In this episode I discuss an article from myspondylitisteam.com that discusses how your nails can be affected by AS. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article . Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoHere is the link to Michael Mallinson's episode: Episode 51Here is the link to Dr. Napier's interview where she discusses research she is doing: Episode 187All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I just give a short talk about where I have been and the journey I hope some of you will do with me.

In this episode I discuss an article from myspondylitisteam.com that discusses headaches and AS. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article . Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoHere is the link to Michael Mallinson's episode: Episode 51Here is the link to Dr. Napier's interview where she discusses research she is doing: Episode 187All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from myspondylitisteam.com that discusses some things that may be causes of spondylitis. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article . Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoHere is the link to Michael Mallinson's episode: Episode 51Here is the link to Dr. Napier's interview where she discusses research she is doing: Episode 187All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from myspondylitisteam.com that discusses some things to monitor if you start a biologic. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article . Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from axialspondyloarthritis.net that discusses some things the auther wishes she was told when diagnosed. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). She brings up some fantastic things to consider. Here is a link to the article by Sarah Lee. Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from Myspondylitisteam.com that discusses some things to consider about getting a tattoo. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article. Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I interview Dr Ruth Napier, a rare disease and Immunologist who is studying Axial Spondyloarthritis. We discusses the research Dr Napier is doing regarding genetics and AS. As always, this is designed to help you increase your knowledge of AS. Here is a link to the discussing the research on mice and Card9. Here is a link to Dr. Napier's lab page.To make a donation to Dr. Napier's Lab and fund her research, click here.Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from axialspondyloarthritis.net that discusses some things to consider about biologics. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article. Here are the links to the YouTube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss a quiz from the My Spondylitis Team that discusses how much you may know on DMARDs. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article and quiz. Here are the links to the Youtube channels for:Yoga for ASAlex Levine, Fitness Alex's Full Workout VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the My Spondylitis Team that discusses limb weakness and numbness. As always, this is designed to help you plan the conversations you may need to have with your doctor(s). Here is a link to the article. Here are the links to the Youtube channels for:Yoga for ASAlex Levine, Fitness Alex's Stretching VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Ankylosing Spondylitis and Axial Spondyloarthritis The Facts Series by Dr. KhanUberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website Wiley Online Library. It looks at the authors study dealing with current aspects for treatment of AS. Here is a link to the article. Here are the links to the Youtube channels for:Yoga for ASAlex Levine, Fitness Alex's AS Diagnosis VideoAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website Creaky Joints. It looks at the authors journey to grieve their past life. Here is a link to the article. Here are the links to the Youtube channels for:Yoga for ASAlex Levine, FitnessAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at tips to do when giving yourself a shot. Here is a link to the article. Also, see the link to Alex's video below.Here are the links to the Youtube channels for:Yoga for ASAlex Levine, FitnessAlex Levine - How I Improved My Flexibility and Strength With Inflammatory Arthritis.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at some ideas on what to do after visiting your rheumatologist. Here is a link to the article. Here are the links to the Youtube channels for:Yoga for ASAlex Levine, FitnessAlex Levine - Dealing with Ankylosing Spondylitis FatigueAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at giving you some ideas on Vitamin D and Spondyloarthritis. Here is a link to the article. Interesting article on Vitamin D.Last week we lost another member of the AS community. Here is a link to Rachel Tew's profile from The Faces of AS Website.Here are the links to the Youtube channels for:Yoga for ASAlex Levine, FitnessAlex Levine - Getting Started All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at managing spondylitis pain. Here is a link to the article.Interview with Alex Levine on exercise - LinkAlex Levine YouTube episode - LinkYoga for AS episode - LinkAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this second episode on exercise with Alex, I expand my talk with Alex Levine of Alex Levine Fitness. Alex has Axial Spondyloarthritis and runs a personal training business. In this we discuss how he was diagnosed, working out, and some of the challenges he encountered. About Alexander Levine and Alex Levine Fitness LLCAlexander Levine owns and operates a virtual personal training business, Alex Levine Fitness LLC, which specializes in 1 on 1 personal training for those with Ankylosing Spondylitis and Axial Spondyloarthritis around the world. He is a certified personal trainer, fitness nutrition specialist, and senior fitness specialist through the National Academy of Sports Medicine. He also holds a Master’s Degree in Sports Leadership from Northeastern University. Alex is on Instagram @AlexLevineFitness and YouTube @AlexLevineFitness sharing his journey and health and fitness tips for people living with Ankylosing Spondylitis. To learn more about his virtual personal training business check out his website alexlevinefitness.com.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I have discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at how biologics work. Here is a link to the article.Interview with Alex Levine on exercise - LinkInterview with Jennifer Visscher - LinkYoga for AS episode - LinkAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at the progression of Ankylosing Spondylitis. Here is a link to the article.Interview with Alex Levine on exercise - LinkInterview with Jennifer Visscher - LinkYoga for AS episode - LinkAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at invisible pain associated with Axial Spondyloarthritis. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I have a long overdue chat with Alex Levine of Alex Levine Fitness. Alex has Axial Spondyloarthritis and runs a personal training business. In this we discuss how he was diagnosed, working out, and some of the challenges he encountered. About Alexander Levine and Alex Levine Fitness LLCAlexander Levine owns and operates a virtual personal training business, Alex Levine Fitness LLC, which specializes in 1 on 1 personal training for those with Ankylosing Spondylitis and Axial Spondyloarthritis around the world. He is a certified personal trainer, fitness nutrition specialist, and senior fitness specialist through the National Academy of Sports Medicine. He also holds a Master’s Degree in Sports Leadership from Northeastern University. Alex is on Instagram @AlexLevineFitness and YouTube @AlexLevineFitness sharing his journey and health and fitness tips for people living with Ankylosing Spondylitis. To learn more about his virtual personal training business check out his website alexlevinefitness.com.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I have discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at giving you some ideas on adding to your treatment plan. Here is a link to the article.A few weeks ago we lost another member of the AS community. Here is a link to Shawna's profile from The Faces of AS Website.Here are the links to the Youtube channels for:Yoga for ASAlex Levine, FitnessAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This week's episode is based upon an email from Cookie about Walk Your AS Off. This a fun way for you to help spread awareness of Axial Spondyloarthritis. Here is the text from Cookie's February 9th email:Today I joined Walk Your AS Off! I miss being a part of something. I miss working towards a goal, hell who am I kidding I miss being inspired to even have a goal!I have wanted to participate for a long time, but life and I got in the way. Plus, I didn’t have it in me to be committed to anything or anyone and I damn sure didn’t want to let my team or anyone down.I mean honestly how much of a difference would my 1000 plus steps a month make? Well? A lot to be honest not only to myself but to my team and to the goal of reaching Mars. One step at a time, all of us working together.You see I have spent most my life missing out because I didn’t think I would do it perfectly or I would be an embarrassment or let people down especially myself. I am never going to run a marathon or hell even crawl one. But I can be a part of something and enjoy being involved and excited about goals being met! No matter how big or small they maybe, they still matter. My only goal at this moment is just to remember to keep up with my steps and hopefully I will be able to make the goals of going one step further each day.What I love most about Walk Your AS Off is that for one it is free! Who doesn’t love “free!” I am not pressured to donate any money or time unless I want to. I can join or stop at any time!&nbsp;I love the fact that I have NO GOAL TO SET OR MAKE! I love the fact that I am the only one who is setting the goal for myself and that no one knows that goal but me! I am under no obligation I can do it if I want to or not! I don’t have to be a walker, runner or in any certain type of shape. I just got to be ME! And I can do that! AND the greatest thing is getting to meet new people and hopefully make lasting friendships! I know I have.I think it is about 2000 steps to make a mile. I figured with any luck I will manage that in one week! Heck maybe even 2023 steps! I have always been a goal maker, which set me up for failure or not even giving myself a chance to try. Because I wanted to be perfect or the best at everything I did. I missed out on a lot. Ankylosing Spondylitis has taken a lot away from me, more than you will ever know but one thing I have gained with this disease is learning to have compassion for myself. I try to remind myself my best is my best. Period. It may not look like anyone else’s best or what others think it should look like, but I know I am doing the best that I can and that is enough for me.So, today I begin tracking my steps! I am really curious to see what they are, to be honest I am excited about doing this. I joined The Blue Apple team because I do not have it in me to be a team captain plus I wanted to be a part of a team, a community. Working together to encourage each other and reassure each other that our best is our best and together we can do this!I was dreading signing up because I struggle with technology, but it was SO SIMPLE!!!!!!!!!!!! My username is Cookie! Original right! Oh, and I asked if my family could use ONE EMAIL and ONE username to give me their steps because they do not want to have to remember to log in and do it. AND THEY CAN! So, I have a few members who are going to text me every Sunday (I think) their steps and then I will add them to the site. (Damn almost sounds like a team captain)I hope you will consider joining us in making our goal to Mars and raising awareness! Thank you for your time. I would love to publicly thank Jenna Dye Visscher for her vision and her determination to create such a wonderful community and project for all of us. Please check out the link below!Hope to see you soon!Cookie<a href="https://walkyourasoff.com/" rel="noopener noreferrer"...

In this episode I talk with Jennifer Visscher about Walk AS One. Jennifer is the Founder and President of Walk AS One, an all volunteer 501c3 non-profit organization that mobilizes and motivates a global community to raise awareness and address the challenges of those affected by Ankylosing Spondylitis/Axial Spondyloarthritis and its family of related diseases.&nbsp;Walk AS One’s main goal is to encourage and motivate those with Ankylosing Spondylitis to be more active through walking and regular exercise. Walking is known to have great health benefits, especially for those with AS/AxSpa.&nbsp;Each May, Walk AS One holds their month-long virtual walk event Walk Your AS Off during Arthritis Awareness Month. Walkers from all corners of the globe come together as a community to track and log steps as teams and individuals - a goal to collectively take over 316 Billion steps (or the amount of steps it would take to reach Mars). This is a far reaching goal that will take years to accomplish and no contribution is too small. Each step counts from all levels and there is no cost to participate.Jennifer invites you to join her team, The Blue Apples, or form your own team. You may add your steps just in May or year round but we always make extra effort during awareness month and for World AS Day that happens the first Saturday of May.&nbsp;Jennifer’s passion is growing Walk AS One but she is also an accomplished artist. Her work can be found at JenniferVisscher.comAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I have discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at 5 things to keep in mind when switching treatments. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at neck pain associated with Ankylosing Spondylitis. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. The three people mentioned that we lost are:0005 Jackie0034 Nicole0100 JohnPlease read Jackie, Nicole, and John's profile.In this episode I discuss an article from the website My Spondylitis Team. It looks at What You Can't See On Imaging. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this bonus episode I discuss a recent post in the Facebook community Ankylosing Spondylitis Community: Support, Resources &amp; Discussion.Steff Di Pardo episodeLisa Marie Basile episodeAll the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at Spinal Surgery and Ankylosing Spondylitis. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at Weather and Axial Spondyloarthritis. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website My Spondylitis Team. It looks at getting an Axial Spondyloarthritis diagnosis. Here is a link to the article.Also, here is a link to Episode 162 about 8 Things A Woman Needs To Know.The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website Everyday Health. It looks at 8 items women with AS need to be aware of. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website Spondylitis Association of the United States. It looks at flares associated with AS. Here is a link to their website.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website myspondylytisteam.com. It looks at depression associated with AS. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website myspondylytisteam.com. It looks at fatigue associated with AS. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.The Reddit Page mentioned: https://www.reddit.com/r/ankylosingspondylitis/All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website myspondylytisteam.com. It looks at memory loss for AS. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website National Axial Spondyloarthritis Society. It looks at biologic use for AS. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the website VeryWell Health. It looks at delayed diagnosis for women with AS. Here is a link to article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the Spondylitis Association of America called Battling Our Demons: The Emotional Impact of Life With Spondylitis. Article. Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the CreakyJoints called Ankylosing Spondylitis is Probably Hurting Your Relationships and Ability to Work, But Too Few Patients Tell Their Doctors About It. Here is a link to the Article. Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the Healthline called 8 Things That May Be Making Your Ankylosing Spondylitis Worse. Here is a link to the article. Knees Over Toes Guy Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the National Library of Medicine called A Road Map of the Axial Spondyloarthritis Continuum. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from the Arthritis Foundation called Adjusting to a new Axial Spondyloarthritis Diagnosis. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I wanted to just say "Thank you" for listening. Without you, this show would not have hit 150 episodes. Everyones feedback and participation has taught me so much. Your giving pushes me to keep putting out episodes.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from Myspondyloarthritisteam.com called How Does Ankylosing Spondylitis Affect the Body? Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I discuss an article from Myspondyloarthritisteam.com on HLA-B27. Here is a link to the article.Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.Also in this episode, I refer to an article about finding support and here is the link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Make sure to check out The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.In this episode, I review an article about fatigue and what some others do to offset the fatigue they get. Here is the link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In the first part of this episode, I discuss the website The Faces of Ankylosing Spondylitis. Here is a link to website. I'm number 158 if you are curious. If you are not part of this wonder page, submit your story. Cookie wants to get to 2700 people on the site, but I bet we can get her way past this.In this episode, I review an article about Conventional DMARDS vs Biologic DMARDS for AS. Here is the link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This is an incredible abstract from 2020 out of the UK that looks at the time to diagnosis and how that 8-10 year timeframe for a diagnosis creates a whole group of people lost in medical limbo trying to figure out what is wrong with them. Here is a link to the abstract.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I review an article about alternative treatments for AS. Here is the link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I review an article from Creaky Joints on heart disease and AS. Here is the link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

Hi Everyone, this is a short message just to give you a health update. I caught Covid so I am resting this weekend and wanted to get out a short episode.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I review an abstract on obesity and AS. Here is the link to abstract.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I review an article on biologics from the National Axial Spondyloarthritis Society. This group is from the UK and some things mentioned may not be applicable to you in other countries. Here is the link to article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

I based this weeks episodeoff an article from Creaky Joints. Here is a link to the article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzWeighted Blanket - https://amzn.to/36RCdi7Steff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This episode is based upon an article from Healthline (article). It talks about 10 things you should be discussing with your rheumatologist. Episode with Andrew Boss:Andrew Boss Pt 1 Andrew Boss Pt 2All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This episode is based upon an article from Healthline (article). It talks about 5 things you can do to help fight the fatigue associated with Axial Spondyloarthritis.Episode with Andrew Boss:Andrew Boss Pt 1 Andrew Boss Pt 2All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This episode is based upon an article (here) by James Hollens released on February 22, 2022 on ankylosingspondylitis.net. It is a great article to get you thinking about your life with AS.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This show is based upon the following article from ankylosingspondylitis.net.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Here are some links to Amazon showing some of the items I discussed. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This episode was based upon this article (article). Andrew Boss Pt 1 Andrew Boss Pt 2All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Here are some links to Amazon products that may help.. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In a recent article from Creaky Joints (found here), I review the 9 new things from the ACR (American College of Rheumatology (link here).All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Here are some links to Amazon products that may help.. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

This episode on life hacks was based upon the following article.All the below links are affiliate links. If you purchase any of the items, I may earn a small commission. It does not change the price of items. Here are some links to Amazon showing some of the items I discussed. Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode, I look at getting a diagnosis and things that you want to discuss with your doctor. I based it upon this article.

This episode is based upon the linked article from My Spondylitis Team.Below are affiliate links. Buying any item through a link may result in the show getting a fee from the vendor. It will not change your purchase price.Get paid to take tests. Here is a link to Rare Patient Voice. If you take participate in a study, you can get paid (amount varies). https://rarepatientvoice.com/TheAxialSpondyloarthritisPodcast/Here are some links to Amazon showing some of the items I discussed. Uberlube - https://amzn.to/3i604N2 Here is the Bean Bag neck warmer https://amzn.to/3uN6mcgBiofreeze - https://amzn.to/33gygBSCane - https://amzn.to/3uN9ftsHeating Pad - https://amzn.to/3Bjd5vzSteff Di Pardo's new book - I Am Not Invisible - https://amzn.to/3JpDScAAll My Ankylosing Spondylitis Shit: Pain and Symptom Tracker by Kinsella Love https://amzn.to/34CHhpx

In this episode I review an article on Asthma and AS. Here is the article.

Here is the link to the article from The Spondylitis Associations website.

This episode is based upon this article. This article is well worth your time to read as their is a lot of links to other valuable topics.

In this episode I look at some areas where you may experience pain from AS. This episode is based upon this article (Here).

In this episode I look at a recent article from Creaky Joints (here) that looks at a study from The Journal of Rheumatology (here) that discusses a study that looks at men and women with AS and the levels of pain that each gender deals with.

In this episode I look at a 12 question quiz on back pain found at The Arthritis Foundation website.Episode on Iritiswww.spondypodcast.com/48But Women Don't Get AS.www.spondypodcast.com/21

In this episode I look at how have an attitude of gratitude can provide for better mental and health benefits set against a backdrop of my struggles. I based this episode from an article by Heather R. Parker and here is the article.Here is the free software = https://www.libreoffice.org/

In this episode I look at your wellbeing and some lead ups to depression based upon some of my experiences. This is based upon this article.Steff DiPardo - Ankylosing Spondylitis group

In this episode I look at an article on axialspondyloarthritis.net by Ali Long on her exploration of what was causing her severe upper back muscle spasms.Ali's Instagram Page instagram.com/anky_as_spanky

In this episode I look at neck pain that you can encounter with sometimes advanced stages of AS. I based this episode upon this article, neck pain.

In this episode, I discuss the basics of giving yourself a shot for fighting Axial Spondyloarthritis. This episode was based upon an article from myspondylitisteam.com. Here is a link to article.

In this episode I look at an article by Lisa Marie Basile. This new article in titled Advice For My Younger Self that can be found on ankylosingspondylitis.net.Lisa was a past guest on the show, I hope you enjoy that episode too.

In this short episode, I look at memory loss and fatigue based upon the following article.

In this episode I discuss why you want to use the term Axial Spondyloarthritis when trying to get a diagnosis for what is ailing you. Here is the link to the NASS website and the videos mentioned.

In this episode I review an article from ankylosingspondylitis.net called: It's Not Working: Dealing With Treatment Disappointment Link

Here is episode number two with Andrew Boss where we finish up a deep conversation on the ways he treats his Axial Spondyloarthritis.

In this episode I talk with Andrew Boss, who has spent lots of time learning about how nutrition affects his Axial Spondyloarthritis. The things discussed in here are not to be interpreted as medical advice. Please consult your doctor.

This episode is based off of an article from Everyday Health. Here is a link to the article.Nifty Grabber - https://amzn.to/3jUhFrYReading/Husband Pillow - https://amzn.to/2VO7xZVCooling Patch - https://amzn.to/3yIK5eFJust Breath by Steff Di Pardo - https://amzn.to/2VYUSTGLinks to Amazon are affiliate links and the show may earn a commission on any products purchased.

In this episode I review an article titled 13 Little Things To Help You Through An Ankylosing Spondylitis Flare (Link to article). This article was published a few weeks ago and features two prior guests on the show:Lisa Marie Basile - www.spondypodcast.com/72Steff Di Pardo - www.spondypodcast.com/76Nifty Grabber - https://amzn.to/3jUhFrYReading/Husband Pillow - https://amzn.to/2VO7xZVCooling Patch - https://amzn.to/3yIK5eFJust Breath by Steff Di Pardo - https://amzn.to/2VYUSTGThe Magical Writing Grimoire: Use the Word as Your Wand for Magic, Manifestation &amp; Ritual by Lisa Marie Basile - https://amzn.to/3yQEVxbLinks to Amazon are affiliate links and the show may earn a commission on any products purchased.

In this episode I try to pass along a few ideas on how to discuss Axial Spondyloarthrits with your family, friends, and acquaintances.Here is the link to the article.Past Articles:29 Things about AS you should understand: www.spondypodcast.com/410 Things Not To Say To Someone With AS: www.spondypodcast.com/13Pet Peeves Heard About AS: www.spondypodcast.com/29

This was a really interesting topic that is important to a percentage of people with Axial Spondyloarthritis. Here is a link to article.

In this episode I look at biologics for the treatment of Axial Spondyloarthritis (axSpA).The information for this was taken from the following website:https://www.myspondylitisteam.com/resources/how-do-biologics-treat-spondyloarthritis

In this episode I look briefly at neuropathy and is it part of Axial Spondyloarthritis? Please review this article for further details https://www.spondylitis.org/research-new/neuropathic-pain-in-axial-spondyloarthritis/

In this episode I look at fatigue that affects us all and some things that might help you like sleep, exercise, and hormonal issues. I based this episode on an article from axialspondyloarthritis.net and here is a link to the article.

In this episode I do some reflecting on what my life has been like with Axial Spondyloarthritis.

In this episode I discuss an article by Lisa Marie Basile called When You Don't "Look" Sick Enough found on axialspondyloarthritis.net. Lisa has been on the show before, episode #72 (www.spondypodcast.com/72). A link to the full article is here: https://www.axialspondyloarthritis.net/living/when-you-dont-look-sick-enough)

In this epsode, I reflect on my use of mobility aids. This episode was based upon an article that a guest wrote for ankylosingspondylitis.net. The article was by Steff Di Pardo and a link to the article is here.

In this episode I look at 9 things you can do to help relieve the pain and stiffness associated with non-radiographic Axial Spondyloarthritis. I reviewed the following article for this episode https://www.everydayhealth.com/ankylosing-spondylitis/tips-for-relieving-pain-and-stiffness-from-nr-axspa/Chronic Insights - https://chronicinsights.com

In this episode I thank the numerous guests who have shared their stories and helped make this podcast last. A huge thank you to you, the listener for coming back each week to listen and send your kind words to me.

In this episode I have a great time talking with Ashley Chaffin who is better known on Instagram as Anky.Spanky (instagram.com/anky.spanky). We chat about how she deals with being a mother with a chronic illness.

In this episode I discuss an article from the Arthritis Foundation (Body Image) titled How Axial Spondyloarthritis and Body Image. I relate this to some things I have dealt with and talk about Jes Hojsan (Episode 049) whose Instagram page - House of Spoons (link). Here recent post on body image got me to thinking about what we all deal with.

As I start back to work after moving I have been extremely tired. Much is fatigue that at this time is uncontrolled. I came across this recent article from Lana Buettner (located on axialspondyloarthritis.net) and thought I would briefly discuss. Here is a link to the article Link

In this episode I discuss 7 ways to adjust your lifestyle to your chronic illness. I also mention that May is AS Awareness Month and you can participate in the Walk Your AS Off event.Items mentioned:Episode Based off this article:https://www.healthline.com/health/adjusting-to-chronic-illness#7.-I-asked-for-(and-accepted!)-helpChronic Insights - https://chronicinsights.comSpondylitis Association of America - https://spondylitis.orgWalk Your AS Off - https://walkyourasoff.com

In this episode I look at a suvey done on ankylosingspondylitis.net about technology. The article is here. Is technology helping or harming? What do you think? Go to www.spondypodcast.com and connect with me. Let me know what is helping you.I mention wrong email in show. Oops. Its [email protected]

In this episode I chat with Lisa Hair, a Physician Assistant by day and the AS Ninja by night as she prepares to compete on American Ninja Warrior. The show is a challenging and intense show that places contestants in a timed race through physically demanding tests.

In this episode, I revisit episode 21 (www.spondypodcast.com/21) that was titled But Women Don't Get AS. This is a review of an article from the Spondylitis Association of America(www.spondylitis.org) and their findings on how women may be affected.In this I also mention episode 39 (www.spondypodcast.com/39) which discusses 7 Steps to Prepare for a Rheumatologist Visit. I also mention episode 43 (www.spondypodcast.com/43) with James Allen who developed a pain tracking app called Chronic Insights.https://www.spondylitis.org/spondylitis-plus/standing-tall-for-women-with-axial-spondyloarthritis/

In this episode I look at 10 tips to help get you through a work day when you have Axial Spondyloarthritis. This is based upon the following Health Central article: http://www.healthcentral.com/slideshow/work-tips-ankylosing-spondylitisI mention these past episodes:Interview with James Allen from Chronic Insights appwww.spondypodcast.com/43Interview with Vinnie Tortorich - Eating Rightwww.spondypodcast.com/3

This episode is an expansion of the three part series I did at the end of January to bring more awareness to Axial Spondyloarthritis. In this episode I expand on the treatments that you can discuss with your doctor to assist in creating a treatment plan.https://www.arthritis.org/health-wellness/treatment-plan/disease-management/treatment-options-for-axial-spondyloarthritis

In this episode I get a change to talk with JoEllen Notte author of The Monster Under The Bed, Sex Depression, and the Conversations We Aren't Having. JoEllen's website is redheadbedhead.com where she writes about all sorts of topics covering sex and relationships.

In todays episode I discuss how Canadians can approach applying for disability due to Axial Spondyloarthrits or any other numerous types of conditions. David can assist Canadians around the country with their needs. Check out his website https://www.resolutelegal.ca

In this interview I discuss the thoughts Julie Job had when deciding to get a hip replacement. As a person with AS, any type of joint replacement is a possibility and hearing aht a person went through in deciding to go through with it can be helpful to people as they deal with their possible surgeries.

In this 3rd and final installment, I look at some of the basic items regarding medication and treatments that you can start to consider to treat your Axial Spondyloarthritis. Talk to your Dr so that they can discuss the pros/cons of anything you are considering.

For the 2nd Part of this 3 part series, I discuss some first steps in treating Axial Spondyloarthritis.

In this episode I talk about things to consider when you are told you have Axial Spondyloarthritis.

This week I discuss 10 natural treatments to try to alleviate pain from Axial Spondyloarthritis based upon an article from Healthline.http://www.healthline.com/health/ankylosing-spondylitis-natural-treatment#traditional-treatments

In this episode I talk with Callie Hunter, a Chronic Wellness Coach. She works with people on coming to terms with their chronic illness and all the pieces of their lives affected by their illness. In this I talk with Callie about how she helps people and her own issues with a chronic illness and how it affected her life.www.riverandquill.com

In this episode, I discuss the progression of non-radiographic axial spondyloarthritis. This is a continuation of or tie in with last weeks episode where we discussed ankylosing spondylitis. Are these two diseases or one?

In this episode, I try to help newly diagnosed people with Ankylosing Spondylitis understand what their prognosis with the disease may be.

I look at how pain, depression, and anxiety can make Axial Spondyloarthritis worse. This episode is based upon the article listed below and includes my thoughts and feelings on how I dealt with these issues.https://ankylosingspondylitisnews.com/2020/10/12/ankylosing-spondylitis-pain-linked-with-depression-anxiety-stress-study-finds/?cn-reloaded=1

In this episode, I look at flares and some things that can be done to help work through a flare.

Lets get going? Who is sick and tired of being sick and tired. While there is no cure for Axial Spondyloarthritis, We do not have to be saddled with additional poor issues above and beyond AS due to inactivity.Healthline article - https://www.healthline.com/health/beyond-back-pain-with-as/exercise-routineYoga for AS (YouTube) - https://www.youtube.com/user/jboder1Beginning Meditation (YouTube) - https://www.youtube.com/watch?v=inpok4MKVLM#weeklyexerciseforas

I talk with Jonathan Ginsberg, an attorney in the Atlanta, Georgia area that handles Social Security Disability cases around the United States. He has 27 years experience handling these type of cases and a YouTube channel with 350+ videos covering all sorts of topics related to applying for Social Security Disability. Please check out his websites and podcast linked below:www.disabilityforms.comhttps://www.youtube.com/user/ginsbergssdwww.4SocialSecuritydisability.comwww.meetalisting.comwww.gridrules.nethttp://ssdradio.com

Interview with Steff Di Pardo author of&nbsp;&nbsp;Just Breathe: Short Essays About My Life With A Chronic Illness. Steff was diagnosed at a younf age and turned her battle with Axial Spondyloarthritis into a book and platform to do advocacy for others dealing with this disease.Steff DiPardo’s writings on ankylosingspondylitis.nethttps://ankylosingspondylitis.net/author/stephaniedipardo/?via=homepage-recentsJust Breath&nbsp;by Steff Di Pardo -&nbsp;https://amzn.to/3p7jfbwInstagram -&nbsp;https://www.instagram.com/totallyfunkless/

A new begginging, The Ankylosing Spondylitis Podcast is now The Axial Spondyloarthritis Podcast. The term Axial Spondyloarthritis encompases both Ankylosing Spondylitis and Non-radiographic Axial Spondyloarthritis.&nbsp;www.spondypodcast.com

For episode 074, I explain what the difference between the terms Ankylosing Spondylitis and Axial Spondyloarthritis. With these two terms&nbsp;&nbsp;visible in many articles, do you know the difference? Is there a difference? Listen to this weeks episode and discover the difference.www.spondypodcast.comwww.buymeacoffee.com/aspodcastwww.instagram.com/as_podcasthttps://www.verywellhealth.com/axial-spondylitis-296400

Jayson:Well Doctor Yu, I really appreciate you showing up on the show today. It's great to have an actual rheumatologist that's also dealing with an autoimmune disease. So welcome and how are you today?Dr. Micah Yu:I'm doing well thank you. And thank you for bringing me on your pocket. I really appreciate the fact that you have Ankylosing Spondylitis. You're really helping the masses out there.Jayson:It's fun to do. And I learned something new every day after almost 40 years of dealing with this. I still realize I don't know anything. So it's just neat to keep learning. So, you have such an interesting position, not only are you a rheumatologist, but you're working on your Integrative Health Fellowship right now. Could you explain a little bit to the listeners’, kind of what Integrative Health is or Integrative Medicine is?Dr. Micah Yu:Yeah, so I'm definitely doing several things. So I'm certified in Lifestyle Medicine with a new specialty. Now, it's from the American College of Lifestyle Medicine that focuses on six pillars. It focuses on nutrition, exercise, sleep, stress, emotional well being and tobacco and risky substance cesation, but also taking courses in Functional Medicine right now as well. And I'm doing my second fellowship in Integrative Medicine at the University of Arizona Andrew Weilprogram. So that program is what I'm most excited about. So that program not only goes over nutrition, but also goes over different complementary or alternative modalities such as traditional Chinese medicine, Reiki, ayurvedic, supplements, manual medicine, mind body medicine, meditation, and so forth. Yeah, so those are the things that it covers.Jayson:So in my past episodes of the shows, I've done episodes where we've discussed, you know, working with or finding a rheumatologist using meditation, in some cases, yoga, all these different things, and what you're really doing is kind of wrapping it all up into one specialty.Dr. Micah Yu:Yeah, that's, that's my goal. I really want to combine the world of traditional allopathic medicine with complementary medicine. I think that's where the most benefit life of patients and that's what I want as a rheumatologist, and that's what my patients are speaking as well.Jayson:So as a rheumatologist, when you're working with patients, I get a lot of listeners as an example, that say, I can't get my rheumatologist to believe that I think I have as they want to keep telling me I have something else. I always wonder, do you continue to be your advocate for what you think you may have? Or do you follow the course of path that the rheumatologist is going or if it's just a head, but do you look for a new rheumatologist? I never know what the correct way to look at it is.Dr. Micah Yu:Yeah, so that's a very tricky question. Rheumatology is probably one of the most difficult fields in medicine to practice and there are still many questions, still nebulous answers as well. So I would say as a patient, if you feel like you have Ankylosing Spondylitis, and you're not getting the answer from your doctor, I would seek out a second opinion from another rheumatologist in the area or virtually as well, because sometimes the rheumatologist can have three rheumatology in the room and all three rheumatologist will have a different opinion. So it's very important in rheumatology to get that second opinion, to see if it matches up with the first opinion.Jayson:And what about things like maybe you haven't been diagnosed yet? I would think that x rays and MRIs can be very important to at least at a minimum set a baseline to say here's what my spine here's what my hips, here's what everything looks like, how does it look like six months a year, however far in the future?Dr. Micah...

Jayson:Lisa, welcome to the show I just gave the intro about you and it's so rich and varied and your background is so immense. But on top of all those interesting and fantastic, great things that you've accomplished, you also have Ankylosing Spondylitis. How did you come across the discovery of Ankylosing Spondylitis? And is it something that ran in your family?LisaYes, well thank you so much for having me. I really appreciate being here. I was diagnosed in 2017. But I've been having symptoms for about a decade. And it does run in my family. My father has it, my aunt, his sister has it and we think that my grandma, who has passed now, had it. She probably had the worst of all of us, sort of in that, I think it really debilitated her. And then I probably have it worse than my aunt and my father. So it's definitely been a journey and just talking about it and, you know, researching, it's something I'm really passionate about.&nbsp;Jayson:Well, of course, it you've got such a varied background in being published across all sorts of different genres. Primarily poetry, that's your what I can take, is your real love. But you also do a lot of writing. And that's how I met you is at ankylosingspondylitis.net. We both kind of work there on and off and you more so than me, you write a lot of articles for that website. What drives you? I mean, you're relatively new to the diagnosis compared to a lot of folks that doesn't make it good or bad. But what drives you so much to be such a giver as you go through your own journey with this?Lisa:Great question. You know, I think I love First of all, Health Union, ankylosingspondylitis.net they're such a lovely bunch of people, it feels like family at this point. For me, I think there's always been a part of me that wants to write to create, like a community or a sense of understanding of the self. And I guess for a long time, I sort of felt like, writing was my way of being in the world and that was my contribution. It was how I could help. It was how I could make friends, how I could understand myself and others. So it's just like, kind of my natural language is to write. So when it comes to pain or suffering, whether it's mental or physical, I just, I don't want people for so if I can write anything that just makes someone feel a little bit less alone, or at least as though their their thoughts are valid. I'm glad writing can enable me to do that. Because I think for a long time, reading helped me feel less alone. So I guess I just want to be what I was given, I guess, reading and writing when I was young,&nbsp;Jayson:You do such a large amount of writing. And I find all of your articles very interesting. I've actually based several episodes of the podcast on your articles.Lisa:Wow!Jayson:I think this is really interesting, because I grew up before the internet developed and was diagnosed with ankylosing spondylitis before the internet. And I was just told you have this thing, good luck, and really wasn't told much after that, that's 35 years ago. You wrote an article that I think could help a lot of people and I'm going to have a link to it in the show notes. But I want to get some more feedback from you and it's called&nbsp;Staying Sane, and Managing AS Facebook Group Usage. That's one of the things I see people post stuff online. And sometimes I think you can't really attribute everything that goes wrong in your life to AS sometimes you can, maybe, but I see this constant usage, and how do you try to remove yourself when you're so prolific online, kind of keep saying,Lisa:Ah, well, when I was first diagnosed, I, you know, just being diagnosed in 2017. I still knew I had it before then, but I just, I couldn't afford a rheumatologist. So it was a lot of Internet stuff for me, like a lot of group...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody has been just having a fantastic week. It's always exciting when I get to bring a new episode out. And this one really I think is going to be real helpful for some folks. But first, before we get to this week's episode, let's take care of a couple of housekeeping things. I need you to help everybody that listens, I really want to see the both Instagram page if you go to Instagram.com/as_podcast, I have a link in the show notes. I hope you go there like the page if you're on Instagram, as well as go to spondypodcast.com and sign up for the newsletter. I really love seeing those numbers grow and I want to see him keep ratcheting up, keep growing so that I can stay in touch with everybody.&nbsp;So onto this week's show, I see a lot of questions across the different Facebook forums, from people that are fairly new to being diagnosed with Ankylosing Spondylitis. Maybe in the last few years, maybe they've moved have not been real diligent about going to a rheumatologist thought, oh, I'll treat it naturally. And just haven't built that rapport up that some people have after dealing with the rheumatologist for over, you know, 10 plus years. So I came across this article, and I thought it would really be helpful. And it's titled Ankylosing Spondylitis doctor discussion guide, what you're forgetting to ask your doctor. And I really thought it covered a lot of good basis, I know what it's like you get in there, you maybe get a little nervous dealing with the doctor dealing with the staff, it's old hat for them, they they deal with the stuff every day, we see them maybe two or three times a year. So it goes back to making sure that you are your best advocate. That's a theme I try to put through this whole podcast show is that the best advocate for treating your disease is going to be you making sure that you give all the proper information to the doctor. And with that said, I wanted to go through the eight things that this article discussed. Now, they make a really good opening. And they say a diagnosis of Ankylosing Spondylitis may leave you feeling overwhelmed and concerned about the future, AS is a chronic or long term form of arthritis that causes inflammation, stiffness, and pain in the joints of your spine. And really the joints of your body, your doctor will go over AS treatment options with you. But they may not address everything you need to know to help you manage your condition. And then they go on to these eight different things. And I really thought they were good included in this. When you go down to the show notes, there is a form that they have in the article that you can print and take to the doctor's appointment with you. And I'll have a link to that. So you can go ahead and and pull it up as a PDF form printed off and take it to the doctor if you'd like.Number One, What can I do to manage my AS at home?&nbsp;Well, there's so many ways that you can look at your house to make it work better for you. And it's important that you know what your limitations are so that you can best address those, you know, maybe at some thing like vacuuming, maybe instead of the vacuum you have, you need to look at a lighter vacuum, maybe even a robotic vacuum, or vacuuming just sections of the home at a time instead of doing the whole house, maybe do a couple bedrooms or a living room, take a break, you know, whatever needs to be done. But there are different things you can look at. If it's vacuuming causes issues, you know, maybe it's ironing, maybe you need to sit down while you iron. I haven't ironed anything. Gosh knows how long. So that one's kind of out the window. I don't even know if I own an iron. I don't think I do grocery shop online or enlist the help of grocery store clerks to bag and load your groceries. This is a pretty easy one. As we move forward, it's been getting easier and...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everybody doing? This week's topic, as you saw from the title is about sleep, and some tips to help hopefully get a better night's sleep. But before that, let's take care of a couple of housekeeping things. Head over to the show's Instagram page at instagram.com/as_podcast. Just remember @as_podcast, head over there, like the page, send me a message that you're on there, comment on some of the posts, and watch, I'm gonna have some new pictures coming up of my service dog in training Bandit. He's growing; he's just turned 10 months old. He's really making vast strides in the training that we're doing. So it's really great. Sometimes I think he's training me sometimes I think I'm training him. Either way, it's been a fantastic journey that the two of us have embarked upon. Also go to the website spondypodcast.com and sign up for the newsletter. It's been amazing. I've seen just a huge huge increase in sign-ups in the last three, four weeks and it's really cool to see all those notifications coming across. So go to spondypodcast.com and sign up for the newsletter, you'll get a prompt when you go on to the website. And lastly, the big news is a download came in for the show from the 101st&nbsp;country that the show has been listened in and that was Madagascar. So there's like 195 countries or so in the world and this show has been accessed in like 101 of them. To me that's amazing. Over 50% of the countries available somebody has access to the show just mind blowing. When I sat down and first recorded this and thought nobody's really going to listen, you know, why would anybody who I didn't even really know, anybody with Ankylosing Spondylitis to listen. So I can't thank all of you, the listeners, enough, the support, the messages, the encouragement that I get on a weekly basis is just fantastic. Feel free to drop me an email at any time. You can reach me at [email protected], love getting them I'll respond to you as quickly as I can.&nbsp;So with that, let's get into today's episode. The topic I want to talk about is sleep. For many of you I see it a come across all the different Facebook forum groups. What's the best mattress, what pillows should I be using; I would kill to have some sleep even just an hour. Sleep is an amazingly challenging thing to try to get on a normal schedule when you have Ankylosing Spondylitis. I'm living proof of that. The daily fatigue that I deal with is amazing. I tell everybody that I can sit down in my office chair and be asleep and a few minutes I can put on something that I'm trying to read or study up on and I'll just fall asleep because I don't generally get a solid night's sleep like many of you. So part of my issue is sleep apnea, I have a really bad and I don't always wear my mask or if I get up from my bed and go out and sleep in the recliner. There's no cpap machine out there. I'm fixing that; I have a person that is getting a new cpap machine. So they're giving me their older one, I’m going to adjust it up so that I'll have a cpap machine in the bedroom and a cpap machine in the living room. Hopefully that'll really help out and make a difference in the sleep. So in this week's episode, I found an article in healthline.com. I'll have a link to it in the show notes. It says eight tips for a better night's sleep when you have Ankylosing Spondylitis. And again, I use the term Ankylosing Spondylitis and I should really be using Axial Spondyloarthritis because these tips are whether you have non-radiographic or Ankylosing Spondylitis, they're applicable across the board. So I should get better in my own mind of using the term axial spondyloarthritis. But again, with that said, let's look at these eight tips that they talk about. Now the author she starts off by saying “you need sleep to rejuvenate your body and feel energized”, which anybody with ankylosing spondylitis can...

******************************ShowTranscript*********************Jayson:Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm really excited because part of what I want to do with this show is bring people's stories to all of you listeners. And I do that by interviewing people that have Ankylosing Spondylitis or non radiographic. And today, I've got a really great guest. I've got Cary King on and Cary has been dealing with Ankylosing Spondylitis. Oh, geez, most of his life and was diagnosed about 12 years or so ago in his late 40s. And has had a interesting journey that I thought was really great to share with everybody. And with that said, Cary, how are you doing today?&nbsp;Cary:I'm doing fine. How are you today, Jayson?Jayson:Great, I really appreciate the time to come on and talk with all the listeners to share your story about your journey with Ankylosing Spondylitis. What I'd like you to do is kind of take us back to what it was like for you before the diagnosis, what led you up to finally getting that diagnosis?&nbsp;Cary:Sure. I actually started on NSAIDs when I was in my teens, when they came out with them, actually, before that I was on Feldene and to cope with arthritic pain, and they could not figure out why I had arthritic pain at that age. So I lived on NSAIDs all the way up till I was about 46 years old and at that point, they took me off the NSAIDs because I had been diagnosed with kidney failure due to some nerve damage from my spine and that's when I got the diagnosis, too. But I had ankylosing spondylitis, and what caused us to become aware of that is once they took me off of it and said two weeks later, I had reached two feet to get a telephone while I was standing and the phone was ringing and I ended up on the floor for three hours and then the bed for three days until I went to the neurological surgeon in Nashville, Tennessee at the time, I was living in Owensboro, Kentucky, and then a man, he diagnosed me with ankylosing spondylitis and said that if he touched me in any way with surgery, I would really have a paralyzed and he started me in the process of going to pain management doctors, because they had different ways to be able to treat it to keep you comfortable and have a good life. But one of the things that I've learned from that journey is you've got to find out why pain management doctor that knows how to do the injections and put the needles, back spots where they move to put the steroids so that you can live a comfortable life.&nbsp;Jayson:You and I talked a little bit before we recorded many people that are diagnosed with either non radiographic or as you were Ankylosing Spondylitis will take a biologic, but you were not able to do that tell a little bit about what happened there.&nbsp;Cary:Now Actually, I never was allowed to do biologics because kidney failure prevents you from doing biologics. So I've had to cope around it without any form of biologics, which I have always wished I could, I understand you can get a lot of relief from them.&nbsp;Jayson:Again, this is what makes this disease so difficult is that all of us deal with these symptoms completely different, and what affects one person, another person may have no issues with at all and that from a patient standpoint, it's very frustrating.&nbsp;Cary:It is and the other frustration with ankylosing spondylitis is there's nobody has ever put together a real comprehensive list of all of the peripheral illnesses that you have to deal with sometimes with this disease. And so you go through the process of living with this disease, and every time you turn around, they're giving you a new diagnosis of something else. It's a problem.Jayson:Well, and you know, I'm not really sure if I...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How's everybody doing today? This has been a fantastic week here in Michigan where I'm at the temperatures have pulled back a little bit. It's been actually cool, but not super wet. So the Ankylosing Spondylitis all feels pretty darn good. I know other people are starting to come into their summers as we had in our falls. So I hope everybody is doing well and and for those of you that are on the west coast of the United States dealing with all the fires, I really hope that you are doing well. And for anybody around the world has got fires or some natural issues, disasters going on. I hope everybody's just safe and able to just enjoy life as best you can.&nbsp;As you get going. I wanted to read a couple of really neat emails and a review that came in on the podcast. And this review was from England, from the United Kingdom, and it says,“I've been enjoying this podcast for a few months now. It's been super informative and helpful to learn about how other people react to this disease and what their experiences are. Thanks for sharing.”&nbsp;Well, thank you, JoeGeorge in the United Kingdom. I appreciate hearing from you. And that's really fantastic. I appreciate the feedback. We're all a community here with ankylosing spondylitis, non-radiographic axial spondyloarthritis. You know, that whole axial spondyloarthritis umbrella. We're all in this together. We're all here to learn from each other and help from each other. And I really hope through the show, if somebody hears something and it helps them, get through the day, through the hour through the week, whatever, that they're better off for it. So I really enjoy getting this feedback from everybody that's listening. I also got an email from a young lady named Lydia, she wrote,&nbsp;“My name is Lydia and I'm from Ireland. I am 39 and was diagnosed with AS just before last Christmas. I am so glad I listened to your podcast and it made me feel less alone with this life changing condition. Thank you for the information and keep up the good work.”&nbsp;Well, Lydia, thank you for reaching out. Thank you for sharing a little bit about you and your diagnosis. I hope this finds you doing fantastic. And again, we're all here to learn from one another. So please don't hesitate to reach out to myself to reach out to anybody with questions or any concerns you're having regarding this. And we'll try to at least support you in the best way we can. Then I also got this email from a gentleman it also in the UK, and he wrote,&nbsp;“Hi, Jayson, I just want to tell you how awesome your podcast is. I was diagnosed very recently. And he says about two months ago with as in your podcast was quite helpful and understanding the basics of AS and what progression to expect in the future. He says I am fortunate to be relatively mild case compared to many horror stories that I've heard and I still have the option of taking biologics in my progression is not good. In that sense, I am really thinking about people like you and others that were diagnosed decades ago when NSAIDs were the only option. It's incredible to think that people went through so much pain with so little pharmacutical support goes on to say I guess it's even worse to think about people about 200 years ago would have gone through this their life with as with no medical support, and everyone thinking that they were simply lazy. It would be really amazing to look at the history of AS (I did do a episode on Ankylosing Spondylitis history. I'll have that in the show notes so that you can go back and listen to it. And I sent it off to him as well in an email response. So I hope he enjoys it finishes up and says), Thanks for doing the awesome job of creating the podcast.Well, you know what, Jergas, you are so welcome. I'm glad you like it. I...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I'm your host and I hope everybody is doing fantastic. I wanted to go over a couple of emails that I got. Both of them are really cool. The first one is from Alex Levine and Alex has a fitness channel and in the shownotes I’ll have a link to his website. And in it, he wrote to me,&nbsp;“Hi, Jayson, I just wanted to reach out and tell you that I enjoy the podcast. I have AS and I work as a personal trainer specializing in training others with AS. I just did an event with the Spondylitis Association of America, discussing health and fitness. It's nice to connect with others who are sharing similar experiences, keep on doing the good work.”&nbsp;And just as I said, I'll have a link to both Alex's website in the show notes, as well as his Facebook page where you can find that event that he did with the Spondylitis Association of America. It’s a very good watch. The second message that I got was from a listener in the Faroe Islands. I hadn't been overly familiar with this country. It's basically located right in between Norway and Iceland and is part of Denmark but it's also I think its own country is the way they they officially look at themselves. But anyway, it's called the Faroe Islands. And I had saw some downloads coming in from there and I was like, that is really cool. I got this short little email but it was really fantastic to get and it was from a gentleman name, I think I'm saying this right Terji Beder, yeah, I think is how you say it. And I apologize for butchering that. And it says,“Greetings from the Faroe Islands. I just wanted to thank you for hosting this podcast. I feel like there's a lot of information, content missing on AS on the Internet, or really anywhere. This is a great contribution with great quality. I love how you can make so many episodes and still managed to keep the topics original and with not much repetition. Great work. Sincerely, Terji.Thank you so much. It's listeniers like you and everybody else that I hear from that I do this. And I really again, I love hearing from everybody. So if you're out there, please send me messages. I'll most likely unless you tell me not to read them on the next episode I read and then I respond back to everybody. I really enjoy receiving all these messages. It's just fantastic. So with that said, let's do a couple of quick housekeeping things, please go to spondypodcast.com, where you can sign up for the newsletter or use the&nbsp;Contact&nbsp;feature to reach out to me. There's also a section in there where you can go to access if you want to get a Spondypodcast t shirt or a couple of other items that are used to help support the show, or even just going to buy me a coffee calm where you'll find a link on the website to help support the show. Everybody has done that so far. Thank you again so much and I really appreciate it.&nbsp;Now on to todays show. I received an email today that was a solicitation for a website I belong to, and the title of it was,&nbsp;You Are Enough. And I saw that and I looked at it and it said, being you is more than enough. And I started thinking about that, as you know, we have this chronic illness, this chronic disease. There's many, many times that we all look and say, why me, I miss what I could do. You know, I really am tired when I tried to clean the house for the day. I have done every one of those and so I'm not picking any one particular person. But I started thinking and I said, is that really fair to us? Nobody I've ever talked to with Ankylosing Spondylitis has ever said, I asked to get Ankylosing Spondylitis. It's like any disease that somebody has, It just is what it is. And you have to work to overcome and move around it. So I started thinking a little bit you know, they had a couple of...

Hello, and welcome to this week's episode of&nbsp;The Ankylosing Spondylitis Podcast. How is everyone doing? Here in Michigan where I'm located, summer's unfortunately coming to an end and we're moving into fall and for me and my Ankylosing Spondylitis, the storm systems that come through on a much more regular basis, the wet cold that's coming at the end of this month starting into the fall. That's really when my AS kind of goes off the charts and I get the most amount of pain.&nbsp;So how are all you doing? How is the weather affecting everybody else I'd love to hear? If you go to spondypodcast.com, you can send a message to me and I will reach out to you I've got one that I have to respond to now from a gentleman that does a lot of really good exercise videos that you can find online and I'll bring more to you on that in an upcoming episode. But outside of that, the great thing I've got is a couple of good bits of information. The show just hit the 97th country that the show has been downloaded in, and that country was Israel. Somebody from Israel downloaded a few episodes to listen to, so that's fantastic. And if that person listens to this show, I'd love it if you would go to spondypodcast.com and shoot me a message from the Contact section. I'd love to get to know who is there, and that goes for any country. If you're out there in Japan, South Korea, Malaysia, Australia, England, Ireland, Brazil, Peru, any of those countries where the show gets downloaded, please go to spondypodcast.com and not only sign up for the newsletter, but also go ahead and shoot me a message to let me know that you're listening that that would be great to hear from everybody. And I will respond to y'all.&nbsp;So let's get into today's message, and I do have a special announcement at the end of the show, too, that I'll tease right now but let's get into today's episode. And I want to talk to folks about basically&nbsp;Beyond Back Pain, Five Warning Signs That You Might Have Ankylosing Spondylitis. What got me thinking about this was that as I was moderating an Ankylosing Spondylitis forum that I deal with on Facebook had a lot of messages coming in lately saying, I think I have as I have all the symptoms of AS, I haven't been diagnosed yet I have my first rheumatology appointment coming up all sorts of different things like that. They have been coming in really fast and furious the last month or so and so I thought I would do an episode directed towards people that are just recently diagnosed, or are in the process of getting a diagnosis or even trying to get a diagnosis and these five items that we're going to touch on. Now, how do they apply to Ankylosing Spondylitis, but they also apply to for the most part non-radiographic axial spondyloarthritis. So, just remember, as you're going through the process of being diagnosed, if your doctor says to you, no, I don't think you have Ankylosing Spondylitis, I'm not seeing the fusion or the in creased amounts of inflammation in your x rays, you know, turn to the doctor and say, Alright, what about non-radiographic, I have all the pain, checkmark each box for all the pain, the symptoms, the hurt back, sore hips, whatever it might be, but you're not seeing the inflammation. So to me, that sounds like non-radiographic axial spondyloarthritis let them tell you that reason they think that it's not that because maybe it is and maybe they just didn't consider it. I hate to say it, maybe they're not 100% familiar with it. So you have to sometimes maybe help them to help you so they don't pass you off as something that it's not in you end up going down a trail that doesn't help you and just frustrates you and doesn't help do it. Is your medical situation, what we know and I like to always start off episodes as Ankylosing Spondylitis is a type of inflammatory arthritis that primarily affects your spine and hips. You know, it can affect anywhere in your body,...

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very excited to have on this guest this week. I think it's awesome to bring in fellow people with Ankylosing Spondylitis to not only hear their story, but also learn from them about what they're doing to deal with the pain deal with Ankylosing Spondylitis. And not feel so isolated and alone, like a lot of us can, because there's so few of us in the day to day life that you might meet. So, this guest I think she's really special. She has a Instagram page that we'll talk about in a little bit as well. But her name is Julie coversyl. Julie, welcome to the show.Julie Caviezel:Thank you for having me, Jayson.Jayson Sacco:I want to touch base on a couple things. You have Ankylosing Spondylitis and have been diagnosed, but you went through a long journey to get that diagnosis. Can you talk a little bit about that? So that I think it's like I said, I think it's really important for women To hear other's stories to know that they're not alone and that there's sometimes you have to be their own best advocate for this disease.Julie Caviezel:Yes, definitely. For me in particular, it was a long journey, and over 20 years of trying to find a doctor who would listen, and a lot of male doctors, especially even female, would just kind of dismiss me as being overthinking it. I heard my primary care doctor of yours said, you just think too much. You just need to you know, not not worry so much. I think it's all up in your head and I heard the, the phrase I think it's more psychological than physiological all your blood work looks great. There's nothing wrong with you. You're in perfect health and when you as a patient Place your trust in your doctor and you're seeking medical advice. And you keep hearing that over and over for years, it really starts to mess with your head and make you feel like there's something wrong with you even though you know in your heart of hearts, that it's not psychological. But you almost start believing them because they're the expert. They should know. Right? And I think it's really important for everyone and I would say women, especially to listen to our bodies, and don't be dismissed. Don't take no for an answer. If you feel in your gut that there's something wrong, keep pursuing it. And my parents call me a pitbull because I tend to be tenacious and very loyal and to the point where I would probably lay down my life for a friend And those are breed characteristics. And with that, I also tend to not give up. And, but there were times over the 20 some years where I felt like giving up and I did, I would for a little bit, whether it be like a few months or a year or so and then I'd kind of try to find another specialist and it just it took a long time. And it wasn't until my symptoms got really severe that I was taking more seriously. And I lucked out I go to really cool clinic up in Seattle, it's called the poly clinic, I highly recommend it. It's doctor owned, it's there's not a lot of bureaucracy, it's like a pure like they just really want to help people. It's kind of the best of the best. And that's where I have found my specialists cardiology dermatology because I've had melanoma. I do have very early stages of coronary artery disease. as well and so now my rheumatologist is there so? Yeah, I mean, it took finding him who he sat there and he saw my x rays after he ordered them which no other doctor had. which, to me the golden rule that I found out is when you're testing for abs, it's not just the blood test, your doctors are also supposed to order the X ray. And no other doctor had done the X ray. They'd only done the blood test and for me and my family, my mom has it and other people on her family habit. They all test positive for that mutation. I don't.Jayson Sacco:So your mom and others that have Ankylosing Spondylitis are HLA b 27 positive. Your...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic, It's been just amazing weather here as we wrap up the summer, can't believe I'm saying that.&nbsp;&nbsp;I am look forward to moving into the fall. I want to take care of a couple of housekeeping things before we get started. If I could get everyone to head over to&nbsp;spondypodcast.com&nbsp;and sign up for the&nbsp;Whenever I Feel Like Sending It Out&nbsp;newsletter, I would really appreciate that. Also, whatever you're listening to on this, whether it be Google podcasts, Apple podcasts, Spotify, whatever, if you can hit the subscribe button so that the show gets delivered right directly to you each time they're published. That would really mean a lot. And then last while you're out there on spondypodcast.com, if you could leave a review for the show. Wow, that would really mean a lot to me. I don't care if you leave it on&nbsp;Apple&nbsp;or&nbsp;Podchasereither one of those two would be fantastic, but I really could use your help to get the word out and if you know somebody who's got Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis you know, please feel free to share the show with them, send them a link to it, whatever works best to get the message out and get more folks that are dealing with Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis to be brought into the family and take part in the episodes. I also wanted to let everybody know that I've started a second podcast and it is called Discover Michigan's Thumb. So if you're from anywhere in the world and want to know more about the people, places and things that go on in Michigan's Thumb, the history, the beautiful, you know, Lake Huron, the sunrises, sunsets, all the amazing things that take place here, please head on over to discovermichigansthumb.com and check out the show. I would really appreciate hearing from anybody that's been here before, from out of state, out of country. People that want to come here, you know, it's just a fun and fantastic area with so many things to do from kayaking along the Great Lakes to even just sitting on the beach and relaxing with a book or taking in the historical sites.&nbsp;So with that, I wanted to go on to today's show, one thing I wanted to discuss and I've seen a lot of conversation generated about it is,&nbsp;&nbsp;"I'm having a flare". What do I do with this flare, it's killing me? I'm feeling so bad, fatigue, everything. I don't know what to do. How do I get help with that? And you know, it's really interesting because flares affect everyone different. And I also help moderate a board on Facebook called Living with Ankylosing Spondylitis. And one of the things I've noticed is there'll be a lot of questions come in on flares and I'm in a flare, I just came out of a flare, you know, whatever the thing is that you're encountering. And we'll also get some questions from folks that have been told in one form or facet that their flares might get less as they age, and what I see Is all of a sudden everybody piles on and says, No, no, you need a new doctor, your rheumatologist is terrible. I have to go in and sometimes remind everybody is that all of our experiences are different and doctors will hand out some very generic information at times. And well, you may experience more pain or a different level of pain or a different level of flares at your age. That doesn't mean everybody does. Some people do experience a tempering of the flares. I can say that for the most part, I haven't had a bad flare in at least five years. Now I do get some pain on occasion. And most of that is helped by being on Cosentyx for the last almost three years, but I have to remind folks and I want to point out that some people will get flares, some people will get a worsening of AS as they go along. Some people might not start

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everyone is doing fantastic. This week's message is all about ways to distress yourself and you know how, to hopefully put yourself in a better position with your Ankylosing Spondylitis and your mental state.&nbsp;This last week has been a bit of a challenge as my family moves through the one year anniversary of my father's passing. So you know, kind of some stressful items dealing with, thinking about, and I started looking and thinking what are ways that I can help myself to feel better, to move through this at an easier pace. I did turn to some meditation to help with the process just to really calm my mind and then look at some pictures and things like that. But how do I carry this forward for Ankylosing Spondylitis when it's not some kind of major anniversary but just in the day to day life, that we deal with having Ankylosing Spondylitis always present.&nbsp;So I came across this article that was titled De-Stress with AS: 10 Strategies to Ease Your Mind(link at end of show notes). And I thought, you know what I’ll read through them and there's a lot of really good information in it. As we all know, stress can trigger a lot of things. But for Ankylosing Spondylitis, the worst thing that we can get from stress is a flare, because we don't know how long that flare is going to last. And sometimes we can control it with medication and other times it runs amok and it's just over the top and we have no ability to rein it in until it decides it wants to stop. That alone is enough to try and keep stress at bay and it's really something we want to focus on as much as possible. There are many ways to de-stress you know, including properly treating your AS, practicing some relaxation techniques, talking to someone or just finding joy in a favorite hobby or extracurricular activity. So you may experience stress, you know, for multiple reasons, if you have Ankylosing Spondylitis with all the stuff going on right now with the COVID around the world, it could be financial health, all sorts of things are going on that can cause stress and lead to flares. Stress can lead to AS flares as I said, by creating tension in your body and triggering a response from your immune system. And once that happens, again, it's run amok and we don't have any easy way to control it. We can, again use medications to help to reel it in, but you know, that may or may not work. So what we want to do is proactively try to reduce stress, which may help to calm your mind and reduce or prevent additional ankylosing spondylitis symptoms. So, you know, try some of these methods.&nbsp;Number one, Stick to Your Treatment Plan.&nbsp;One critical factor for managing Ankylosing Spondylitis is to stick with what the doctor recommended to you. This generally can help to reduce flares, not all the time, but it can help to reduce flares. And maybe that can help to alleviate some stress. So they provided a checklist of things and your treatment plan may include checking in with your doctor regularly, seeing a physical therapist, or similar medical professional, staying active and eating a healthy diet, taking medications as directed, especially during flares, resting when needed, and avoiding smoking. Now, most of those I've done for pretty much my whole life. I never smoked, resting you know, when you're a young guy, you go, go, go, go and same with people that everybody else when you're young, you just go like crazy. So you get as much rest as you can and you just deal with it that way. Now, taking medications is, in my opinion, very important. When I was younger, there were no biologics and when I got to point where I could take them the type Humira and Enbrel didn't work long term for me. So that was something that it wasn't until about three years ago that I was prescribed a different medication, a biologic Cosentyx that worked...

Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. How's everybody doing? I can't believe this year is more than halfway over. It's flying by even as, as goofy as 2020 has been. The year is just flying right by today's episode going to be a little bit different. There's a website that I like, and I sign up to get notifications when they send out new articles that are put up on the website. And the website is called ankylosingspondylitis.net. And you can go there; you can sign up to get notifications. There are some good articles, and they're almost all written by people with ankylosing spondylitis, which makes them kind of interesting to read and see what others are going through. So the notification came the other day, and I see this title it says&nbsp;Be True To Yourself, Even if it Hurts. I noticed it's written by Jed Finley. Jed was on an episode recently with myself and a number of other people with Ankylosing Spondylitis, Episode Number 57, which was the group discussion on our Ankylosing Spondylitis journey, and I'll have a link to that in the show notes. Jed also started the Facebook group&nbsp;Living with Ankylosing Spondylitisthat has 28,000+ members in it, so it's a very active group, a lot of people a lot of discussions going on, on all sorts of different items. So anyway, he wrote this article, and I started to read it and you know, I agreed with a lot of what he was saying, and I'm just kind of gonna go through it and give my feelings and two cents on it. And the article is titled,&nbsp;Be True To Yourself, even if it hurts. And again, it's available on ankylosingspondylitis.net. and I have a link to that in the show notes.&nbsp;So Jed writes, you're walking down the street, you run into someone, you know, they stopped to talk and the first question they ask is, how are you? Well, we've all been there you see somebody, Hey, how you doing? What's it like? How are you feeling? For me, I walk and many of you can relate to this. Walk with a cane and I'm hunched over. So just seeing somebody coming is can be a challenge because I'm looking, you know, my neck is fused down. So to look up, I don't always see who's approaching. And my peripheral vision on the sides is bad. So I've had people say stuff to me and I, I've turned my whole body to look at them. And I think sometimes I might not hear them and they think I'm being rude. And that's not the case. It's that I don't see you or don't hear you. So, again, it's just one of those things that AS just keeps giving and affects us in unique ways. And it continues when you have a chronic illness. This is a loaded question. And it's loaded for T Rex, your friend or acquaintance is not ready for the blast. That is your answer. You say to them something like my back has been killing me for a month. I have four doctor's appointments this week. I'm trying a new medication, but it gives me headaches and my relationship with my spouse is strained because of my illness. He goes on. No, we don't say that. We don't even mention we are doing that great. We say the same thing every time I'm fine. Well, isn't that the truth? If you go into a big rundown of everything you're dealing with, most people are going to check out after like 30 seconds, then you're going to get the obligatory. Uh huh. They've got their own things they're dealing with, in some cases; they ask you how you're doing and they really don't care. They're just being, you know, nice, and that's fine. But you always have to temper it and that's one of the things that stinks about this diseases. Is it just somebody you talked to in passing? Or is it somebody that you might really know, and want to have a little more of a deeper discussion with it, and you have to judge whether they really want to have that deeper discussion, to understand maybe what Ankylosing Spondylitis says, I live in a very small town and recently, I was...

Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. I'm really glad that you could join me today because we're going to have fun today, we're going to be combining some of my favorite subjects history, modern medicine, and a little bit of speculation mixed in. So stay tuned. This one should be a lot of fun.&nbsp;I've partnered up with a couple of really good companies. One is Joy Organics and you can find the link in the show notes. If you use that link. It doesn't change the price of anything for you. It just reverts a little commission back to the show to help keep the show going and hopefully growing and Joy Organics make some of the best organic based CBD products that you'll find whether it be tinctures pills that I take the soft gel tablets, I really like those and also a drink mix that I just put it into a jar water, shake up the water and drink it and it adds a bit of CBD through the day as I drink that water. So it's a great way to help level it out through the day as you're drinking that. So they have all sorts of products, lotions. So check out the link to go to Joy Organics. They're 100% organic hemp grown in the United States is where they derive all their CBD oil from so you can't go wrong going to Joy Organics link in the shownotes. The other one is new. Now, if you have kids cover their ears Foria is an intimacy lotion that is really fantastic and it works. I don't even know how to describe it beyond just that it works. It has a CBD base to it, and you apply it and it helps. So again, go to the show notes where you can access the link for Foria and then go and read about it and see if that fits something that might be of interest to you. Again, no price increases but it does pay a commission back to the show which helps to keep the show going and growing. Thank you.&nbsp;So in today's episode by the title, you saw the word Neanderthal and you go, “What does that have to do with ankylosing spondylitis at all?” Well, I wondered the same thing. And then I was directed towards a few interesting articles and I started reading them and it really was a very interesting hypothesis. So about 30,000 years ago, give or take a few thousand years. What we would know as the modern homosapien came wandering out of the continent of Africa as they were migrating north. And as they got into the colder climates, they walked right into and head on confrontations with an ancestor of theirs that was already living there. But that hadn't changed in the hundreds of thousands of years. The Neanderthal was they got there, what you would expect took place, conflict, fighting, death as one type of species tried to basically conquer the other. Which one was going to win? Well, it ended up obviously being humans, you know,Homo sapiens. But did we walk away with a gift or maybe a curse From Neanderthals? Well, let's look at that. It's an interesting hypothesis or interesting series of debates that had gone on around this. So I was directed to a website called Everyday Battle, where there was an article entitled&nbsp;How a weird fetish among our ancestors led to Ankylosing Spondylitis. And so I started to delve into this article and found it to be really interesting, and I'll have a link down below what the studies are showing where now this is from some information that came out in the 2013, 2012 somewhere back in that area. But it was based upon looking at the DNA of Neanderthals and (modern day)humans and what they found in that and what may have carried over to us as modern humans. Studies suggest that Neanderthal genetics may be responsible for autoimmune diseases in modern humans. The author discusses a documentary called Decoding Neanderthals and in that documentary, they talked about discovering in the ancient DNA of these Neanderthals, the HLA alleles, and one particular HLA, HLA-B27 is the main genetic marker that's used to diagnose Ankylosing Spondylitis. It's found in 95% of...

Jayson:Welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today I'm very excited because we're going to touch on a subject that I get a lot of requests and information about, and that is yoga, specifically yoga for people that have Ankylosing Spondylitis. And today I've got both Jamie Boder and Geoff Lindsay on. Jamie is an instructor and teaches people yoga right now virtually. And he's located in England. And Geoff is an instructor , and&nbsp;&nbsp;has his classes that he shows and demonstrates different processes. So Gentlemen, welcome.Jamie Boder:Thanks for having me, Jayson.Jayson:It's great to have you guys. So, Jamie, tell me a little bit. You also have Ankylosing Spondylitis. Tell me a little bit about your diagnosis. And then were you into yoga prior to your diagnosis or was that something you came to afterwards?Jamie Boder:So I started experiencing some things when I was about 14 and was put to growing pains and then other different conditions, lots of different lists. And eventually, I asked my GP, I need to see a rheumatologist just how to interlink. And then the day I saw her, she said, Yeah, I'm pretty sure it's this condition. And that was when I got to about the age of 18. That's when I got my diagnosis. And at first, it was a lot to take in. And I don't think the Internet can always be a very helpful place to learn about the condition if you're new to it, but that was my position. And the biggest thing that I was really thinking about was being a skateboarder half of my life, started skateboarding when I was like six years old, I was like, I can't stop. This isn't my big passion at the time. It was something that you know, competed and a very huge part of my life. So anyway, I went to a support group, and I wasn't very up for it, but I kind of forced myself to go, and that's where I met Geoff. And Geoff looked really in a good place, physically and just had something, you know, looks very healthy and I asked him, What were you doing, Geoff, you know, you must be doing something different from other people. And he told me about yoga. And it was that day, I went home and literally dedicated myself to practicing yoga for about, yeah, just pretty much every day for a year. I just didn't stop and yeah, transformative, to say the least. So that's a little bit about my journey with yoga and AS and have been practicing ever since and now teaching as well.Jayson:So how many years has that been now?Jamie Boder:So it's been about five years of being practicing yoga consistently, nearly every day.Jayson:So with that, have you noticed any worsening like in your x rays that your GP will do?Jamie Boder:So when I first started having symptoms I was in such a lot of considerable pain and struggled to. I had a bit of a limp and couldn't sweat definitely couldn't do any sort of sports, just essentially very desperate. And for the last two years, I've had stiffness but I haven't had any pain whatsoever. And that's was a bit you know, huge huge for me. So yeah, I'm in terms of x rays and things like that. I last had an xray about two years ago, and there's things are looking pretty good.Jayson:Now, are you on any medications or biologic anything to help with that?Jamie Boder:I haven't been for on biologics for a year. I stopped biologics about a year ago, because I'm not for or against medication. I know medication can work very well for some people. But for me, I was at the point where I didn't feel like I was in need of it. And therefore I stopped taking So not on at the moment, but something me and Geoff will always emphasizes, if you're on medication, yoga can help with that medication with it's all integrative. So we're not we're not against using medication when necessary.

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. This week's topic is something has been a huge challenge for me this week&nbsp;fatigue.But first, I want to welcome the new listener from Guatemala, which marks the 95th country that the show has been downloaded in. And also, don't forget to head over to spondypodcast.com to sign up for the&nbsp;Whenever I feel like it&nbsp;newsletter. I'm hoping to get one sent out next week. And check out the T-shirts and stuff available on the website. The items are at this time available in the United States and Europe, with more countries coming soon. Also check out the new facemasks I made available. I also wanted to thank a couple of companies that I've partnered up with to bring some great CBD based products. The first is Joy Organics. They're an awesome company that makes CBD based products made from 100% hemp from America that has all been organically grown. Also wanted to welcome Foria which makes an amazing CBD based intimacy oil. These two companies are fantastic partners with the show and I can attest to the benefits of each company's products.&nbsp;So let's talk fatigue. This week has been just quite the challenge. I've been just tired and worn out all week regardless of the amount of sleep I get. I do wear part of the night of C-pap machine when I sleep in my bed, but there's times when I get up and I go out and sleep in the recliner that I have. So I don't have a C-pap to wear out there. But I'm looking at like a mobile travel c-pap option, a smaller machine that I can keep in the living room so that I wear when I'm sleeping in the recliner. And it's just been an amazingly challenging week, even to the point where the thought of recording the podcast has just been really hard. Part of it is probably being cooped up from the COVID stuff and top that off with some fatigue and it's just been really a rough week. And I noticed that I'm not alone in those thoughts. I was going through the different boards on Facebook. And I noticed there's a lot of question about how do I deal with fatigue? What do I do? I can't get any energy to do anything. And so I was thinking about that and I came across this article on tips for beating Ankylosing Spondylitis fatigue. Some of these we may be doing as a collective group. Others might be something new for you to try. So let's see what we got here.&nbsp;Ankylosing, Spondylitis and fatigue.&nbsp;Well, Ankylosing Spondylitis is known for all the complications related to inflammation, the spine, the hips, you know, basically any of your joints that it can affect but primarily spine and hips. Well, the pain and discomfort may disrupt our daily activities. You could be contending with another debilitating side effect, which is fatigue. According to the National Ankylosing Spondylitis Society, fatigue is one of the most common complaints among AS patients. Excessive tiredness can be attributed to AS, but it can also be a side effect.&nbsp;Inflammation and Fatigue.&nbsp;The biggest culprit behind AS related fatigue is the inflammation. Inflamed tissues, whether it be in your hips, your spine, ribs wherever release a small protein based chemical called cytokines. Considered to play a major role in fatigue, pain, psychological disturbances, these cytokines are produced by cells in your immune system react in your body similar to those produced when you have a cold or a flu. This is why you may feel like you have a viral illness when you really don't it's just the fatigue. Treating inflammation with medications can help to reduce the excessive fatigue, but keep in mind that prescription drugs that contain opioids or coding may increase tiredness. Aim for sound sleep. In some cases, fatigue isn't exactly related to the inflammation. You know, the pain and discomfort can make it difficult to fall asleep at night, adding fuel to...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. This week I wanted to talk about chiropractic care. You know, that's probably one of the few topics that when brought up online will really can develop into some heated conversations about should you or should you not? And so I thought I'd take a little bit of a look at this discusson further, you know, issues around chiropractic care.&nbsp;With ankylosing spondylitis, we're all just trying to alleviate as much of the pain that is associated with ankylosing spondylitis as we can. And at its basic core, you'd think that chiropractic care would make a lot of sense since it revolves around the spine, the musculoskeletal system. And you'd think, wow, that really could be a good addition to my overall care. But you have to kind of look at it in the context of how much you're fused with Ankylosing Spondylitis. Back in 2015, the American College of Rheumatology recommended against the use of any type of spinal manipulation, which is one of their tenants of how they deal with you and how they treat you. But a study done in 2016 of patients that had seen chiropractors and then were later diagnosed with ankylosing spondylitis is that it was found that that chiropractic care actually pushed them to go see, to look further into their back pain. 3300 plus people with ankylosing spondylitis were looked at, and it was found that about 7% of those people were ultimately diagnosed by a rheumatologist and they had first been seen by a chiropractor. That was me, by the time I was diagnosed in 1984. I had been seeing a chiropractor for several years before that, and it was him that finally pushed me to go see a rhuematologist, and that was where the ultimate diagnosis of Ankylosing Spondylitis came in. So, is that a bad thing that they started off there? Maybe not. It's really going to boil down to how early in the diagnosis they were.&nbsp;The Spondylitis Association of America specifically advises against back and neck manipulation by a chiropractor. They think that it could lead to additional injury of the spine when you have spinal fusion, and that's a very solid concern. “Chiropractic therapy is often useful for low back pain, but I would not suggest it for a person with ankylosing spondylitis” says Dr. Allen Fox, a rheumatologist and Professor of Internal Medicine and Chief of the Division of Rheumatology at the University of Michigan in Ann Arbor. And as a side note, I did a whole interview with Dr. Fox, Episode Number 42. Back in March of this year, and I'll have a link to that episode in the show notes The Spondylitis Association of America also goes on to say the traditional hands on manipulations used in chiropractic care involve moving the joints around in order to achieve therapeutic goals, such as easing pain, and correcting alignment problems. However, people with ankylosing spondylitis may have joint damage that can become worse or result in a fracture with such forceful pressure for a person with ankylosing spondylitis. “The spine may have become fused in this makes it more susceptible to injury”, Dr. Fox says that's why people with ankylosing spondylitis who are interested in chiropractic care should find a chiropractor who has experienced specifically with ankylosing spondylitis, and using the gentler techniques.&nbsp;So what is chiropractic care? Well, chiropractic care typically involves as we've said manual therapy. It is including anything from stretching and sustained pressure to spinal manipulation. Chiropractors are trained to treat a variety of conditions but their focus is on improving joint motion and function of the musculoskeletal system. They often focus on back pain, neck pain, and pain in your arms or legs. The manual adjustments that chiropractors are most known for are usually paired with other treatments. This includes soft tissue therapies, lifestyle recommendations, fitness, coaching, and...

Show Notes:Aerilyn Medina&nbsp;– Aerilyn has a&nbsp;small business where she teachs about inclusion and equity for people with disabilities, She also helps people with disabilities and their accessibility needs. Her website is&nbsp;oarcidservices.ca&nbsp;Her Instagram it's&nbsp;aeriekm17&nbsp;for her facebook is&nbsp;Aerilyn Medina.Michelle Bell&nbsp;– Michelle has a Youtube channel with her Vlog on Ankylosing Spondylitis. Here is a link&nbsp;AS VlogJed Finley – Jed founded the Facebook group Living With Ankylosing Spondylitis. It was set up 13 years ago and has over 27,000 members making it one of the larget groups on Ankylosing Spondylitis. Here is a link -&nbsp;Living With Ankylosing SpondylitisDon’t forget to check out these opportunites to support the show:You can go to Joy Organics for your CBD products. From creams to drink mixes, Joy Organics has you covered –&nbsp;Joy OrganicsAnother amazing product is Foria. Foria Awaen is a CBD enhanced Intamacy product. I have personally used several of these products in the past and according to my partner, she loved them.&nbsp;Foria AwakenYou can also support the show via Buy Me a Coffee. A simple and appreciated was to show your support of the show -&nbsp;Buy Me A Coffee

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. How is everyone doing? I hope everyone is having just a fantastic week. So if you're on my website spondypodcast.com, you'll notice a link on the main page called&nbsp;Buy Me A Coffee. And that's a link that I used for anybody that wants to provide, you know, a donation to help keep the show going. And I have a fantastic message that I got last night through that link. Lisa, who is from Ireland sent a donation, which is fantastic and much appreciated and on it she wrote,&nbsp;I've had AS for 22 years, everything you describe is true. And I cry when I listen. I cry because I'm so sad for myself and because I'm not alone. Thank you from the bottom of my heart. Love Lisa, the cat lady from Dublin, Ireland.Well Lisa, I'm glad you like the show. I'm glad you find some benefit to it. Also Lisa and many others have done on spondee podcast comm you can sign up for the newsletter that I occasionally when I feel like it when I get around to it create. So I'd encourage you to go there to spondypodcast.com sign up for the newsletter and join Lisa and all the others receiving information when I get around to sending it out. This last one I sent out had pictures of Bandit in it, my service dog and training so you never know what I'm going to include in there.&nbsp;Now on to today's show, I see a lot of questions asked online every day about Ankylosing Spondylitis and these questions ranged from real basic, I've just been diagnosed, what do I expect? What should I expect? Should I take medication? Can I cure it? To very detailed questions specifically in relation to is this part of Ankylosing Spondylitis or not? So I put together these nine questions and some answers to them that hopefully this will help you as you start off your journey with Ankylosing Spondylitis.&nbsp;Number one is Ankylosing Spondylitis an autoimmune disease? Ankylosing Spondylitis is both an autoimmune type of arthritis and a chronic inflammatory disease. An autoimmune disease develops when your body attacks its own healthy tissues. Ankylosing Spondylitis is also an inflammatory condition that involves inflamed or swollen joints. It often affects joints and bones in the spine, lower back spinal bones confused together over time, and this is what is known as bamboo spine and, and how the name developed.&nbsp;Number two, what exactly is Ankylosing Spondylitis?&nbsp;Ankylosing Spondylitis is a type of inflammatory arthritis that affects the spine and the sacroiliac joints in the pelvis. Like many types of arthritis, Ankylosing Spondylitis can cause pain and swelling in the joints. This condition affects the bones of the spine, the vertebrae, and joints in the lower back. It also causes swelling were the tendons and ligaments attached to the bones in your spine. Your doctor might call this and Enthisitis pain and discomfort from Ankylosing Spondylitis can lead to symptoms in other joints such as shoulders, hips, you know, basically, if there's bones that come together, or there's muscles or ligaments AS can affect those areas.&nbsp;Number three, how is Ankylosing Spondylitis diagnosed?&nbsp;The doctor will likely start by asking about your symptoms and family history of AS. An exam can reveal symptoms like pain, tenderness and stiffness of your spine. The doctor then might send you for an X ray or MRI, or maybe even both, though generally not on the same day. Both tests can show damage to bones and soft tissues in your spine. An MRI creates more detailed images, and it can show damage earlier in the disease than an X ray can. Another way to diagnose this condition is with a blood test for the HLA-B27 gene. Now, some people don't have this gene, but have...

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. How's everybody doing here in the Northern Hemisphere, I'm in North America and we're having summer, the heats going and man, it feels really, really nice. I know for you in the southern hemisphere, the winter is kicked in. So in areas like Australia and so forth, you're getting a cooler temperature. So I hope that's nice. I hope you guys had a great summer. And overall, you know, I hope it helps with all of the arthritis and all the issues that everybody's dealing with.&nbsp;Well, in today's episode, I wanted to delve into a subject that I think might be of interest to a lot of people when they look at the boards on Facebook quite a bit. I see people that say, I know I have Ankylosing Spondylitis. I know I've got it. But my rheumatologist won't give me a diagnosis. I have all the pain. I have all the, you know the symptoms, but he or she just won't tell me I have Ankylosing Spondylitis. Why is that? It's frustrating. It's delaying stuff. Well, I'm going to switch it around a little bit. Say that not in all cases, but maybe your rheumatologist is not wrong. Maybe you don't have Ankylosing Spondylitis. But maybe you're dealing with non-radiographic axial spondyloarthritis. Wow, say that multiple times real fast.&nbsp;What is it and how is it treated?&nbsp;And that's what I want to cover today because you know, it might be that for some when you go at your doctor saying I have Ankylosing Spondylitis, I have Ankylosing Spondylitis, why won't you diagnose me? They're thinking and only trying to look at maybe not correctly, but they might only be looking at the Ankylosing Spondylitis as the possible outcome. And when the pieces don't fit, even though most of the pieces of the puzzle are there, there are maybe a couple of very key pieces that are missing. You walk away frustrated because you think that I've got this ankylosing spondylitis and the doctors just not listening to me and not validating what I feel. Well, that's where this term that I've covered in several episodes recently, axial spondyloarthritis comes in. That's that umbrella term that covers nonradiographic axial spondyloarthritis and ankylosing spondylitis. What's the benefit of me knowing about the difference and let's deal with that because I think it's really important when you think of inflammatory arthritis like rheumatoid arthritis you often think of it as affecting small joints, the hands and the feet. Those are usually the first I think of when I think of rheumatoid arthritis nonradiographic axial spondyloarthritis is a different kind of inflammatory arthritis. It falls under an umbrella category that I just mentioned the axial spondyloarthritis. Well, nonradiographic is a type of inflammatory arthritis that causes lower back pain among other symptoms. There's your exact same symptom that you might encounter with ankylosing spondylitis, that lower back pain, that hip pain, the sacroiliac joint pain, you know, all that can fall into both of these nonradiographic, there are symptoms but no visible damage on the X rays. That's the big key takeaway right there is your rheumatologist could be looking at your x rays and saying I don't see any damage, you know, maybe you have fibro or, and they go off on a tangent because they're not thinking nonradiographic. And that's where you, as the patient have to kind of work backwards with the doctor and maybe walk them and say, well, if you're saying I don't have Ankylosing Spondylitis is nonradiographic a possibility. So that's one thing you can start off with, you know, MRIs can help diagnose nonradiographic axial spondyloarthritis, but sometimes they too can be negative, and that can really, really throw a diagnosis off. And that's what can make this so challenging and so long unfortunately for some people to get a diagnose. The good news is though there are treatments that are transitioning from the Ankylosing...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast, I wanted to take care of a couple housekeeping items. First and foremost, I got a download the other day from the 91st country to have at least one download take place. And that was a download, a single one that came out of Iraq. So to whoever did that, I hope you enjoy the show. Welcome. I hope you download a bunch more to listen to and are able to interact through the spondypodcast.com website. Let me know who you are and if there's anything I can do to try and answer any questions, I look forward to interacting with all the listeners across all 91 different countries where downloads have coming from. That just blows my mind. It's just such an amazing thing to think of that we're all connected by this one thing called Ankylosing Spondylitis.&nbsp;And with that I had a review come in and I wanted to touch base on this and read it because it's also going to delve into something to do with the topic today. The person wrote&nbsp;“Finally a diagnosis. Thank you for your podcasts. Yesterday I was diagnosed with AS. It only took them nine and a half years. I’m practically bedridden at this point is advanced so far. Can it get better?”&nbsp;From Gigi Goodwitch in the United States, GG, go to spondypodcast.com and reach out and let me know if it starts to get better for you. My answer to that is, you know, can it get better, maybe maybe with the having the diagnosis, you can finally get the medications that you need to help alleviate the pain, the inflammation and bring you some benefit and no longer be bedridden. So again, I really hope that you reach out through the website spondypodcast.com so that I can get an update and know how you're doing and then for anybody listening, I've seen the numbers going up again and it's fantastic. Go out to spondypodcast.com, sign up for the newsletter, and I'll be sending one out here in the next few weeks. And I've got some special items coming up, we're going to do something a little bit different with listeners from few different countries to bring you an episode that I think will be really unique.&nbsp;But on with today's show, well, when I looked at the websites, because I like to read a lot of the posts that get done on the various forums on Facebook, and one of the things that I saw discussed over and over recently, is something that I can really understand and empathize with. And that's with all of us having chronic pain, how do we deal with the burden of guilt? And I had come across an article from a website called despite Pain(despitepain.com) that I had been wanting to work into a show, and you'll find a link to the website in the show notes but the website is Chronic Pain. How can we overcome the burden of guilt? This was done back in December of 2018. Again, from the website despite pain, it was pretty interesting because I really can understand this, you know, the guilt of why me the guilt of, I can't do what I want to do. I can't run around with my friends the way I want to run around with them or my kids or my spouse. All of these things about why am I the one dealing with this? And I can tell you, that's something that I dealt with for a long time, especially pre Internet days. I was diagnosed a long time ago, 36 plus years ago, and there was no Internet, there was no way to connect with other people that had Ankylosing Spondylitis. I was just given this diagnosis. I was 14 years old, kind of put out there. You know, good luck. And it really changed a lot of the trajectory of where I had envisioned my life as a young man going and what I ended up doing, it's completely changed everything. And now, with going on disability, it's brought me to the ability to do this show and connect with so many people, but back to guilt. You know, we struggle with the pain. We all have different levels and different styles of pain. And we struggle with the stress that that pain brings about, and...

Hello, welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this show finds everybody doing fantastic. I want to thank those people that went over to spondypodcast.com and signed up for the newsletter, I really appreciate that it's great to see the numbers growing. And, you know, I look forward to communicating with everybody through the newsletter and hearing from you on the Contact link.&nbsp;So, on today's show, one of the things that you know, I've really thought about lately is not so much that it's affecting me but that I've seen it talked about a lot online is the pain that comes along with ankylosing spondylitis and the damage that it can do to you emotionally. So I wanted to look at pain and your emotions today and I happen to find a really neat article on that titled&nbsp;Pain and your Emotions&nbsp;on ankylosingspondylitis.net if you have not gone out to Ankylosing spondylitis.com That, I encourage you to do that. It's a fantastic website filled with a lot of really, really good articles about Ankylosing Spondylitis and all the ramifications that it does and how it affects your life by not only the editorial team, but also by a number of writers with AS. So I encourage you to head over to ankylosingspondylitis.net.&nbsp;As we all know, Ankylosing Spondylitis is a chronic type of arthritis. It's also as you've heard, in the last few episodes, we refer to it as Axial Spindyloarthritis, which is kind of a little more inclusive term. It is characterized by pain in your hips, your spine, rib cage, neck, really anywhere, it can affect you. We're all affected differently. Mine started in my hips, my si joints, progressed to the actual hip socket damage, and then worked its way up at spine for me So it's been a unique journey on my end. But I know other people have had completely different experiences. And you know, that's the great thing about the community is you can learn from others to help understand what your body is going through. So anyway, it's caused by excess inflammation in the joints. We know that people with ankylosing spondylitis can experience limitations in their ability to move because of the pain and inflammation. One thing we hear over and over is get up and move, you’ve got to get up a movement. And I agree with that, there are some with ankylosing spondylitis like myself, who after multiple hip replacements moving is not as easy I walk with a cane, and in many spots, I use crutches only because I've been having a pretty serious issues with my hips lately. So we're all different. I encourage you to do as much exercise in any given day as you can, because that movement is really going to help to keep you in the long run, feeling better. And then lastly, over time, your spine can fuse. This is what's called bamboo spine. Its kind of where the name of the disease started. And you can see somebody with it very distinctly because they'll generally be hunched over. You know, it's not hard to pick out chronic pain and Ankylosing Spondylitis.&nbsp;So, as Ankylosing Spondylitis progresses, you know, it progresses differently in everybody. Where I had a heavy attack in my sacroiliac joints and my hips when I was younger, others have it in their back, knees, ankles, wherever but one of the most common symptoms that accompanies the disease is the overall just chronic pain. Many AS patients are able to successfully manage their pain using over the counter medications and prescription pain medications. You know, the Nsaids, the heavy strength nsaids, the maloxicam, the Celebrex is whatever your body handles the best. I was on Celebrex for geez, I don't know 17-18 years, something like that worked really well for me. But I now have some kidney damage because I also took other stuff on top of it that I wasn't supposed to, to help. And well, I lost some kidney function, so that can be common for folks. Some people, however, experience...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Well, welcome back to the show. It's great to have everybody listening and I wanted to do a couple things right up front. First, I got a really great review I wanted to share with you that came in via podchaser (see link at end of notes) and you can find a link to podchaser in the shownotes. If anybody wants to read further reviews, or even leave a review and hear me read it here. But this one says;&nbsp;Five stars. What an incredible resource. If you're newly diagnosed, or have been struggling with as for a while, you need to listen. Jason shares easy to understand information and conversations about the real life things we deal with. It's super positive Podcast, where you feel understood and empowered. Thanks, Jason, for all you're doing in the community.&nbsp;Well, thank you to the author of that review. That's what this is all about. I absolutely love it.And on a side note, I thought I'd give you all an update on training of the dog. My math is is not the best and I come to find out. He's gonna be six months old. He's not six months old now. So Bandit is doing great. We're working on the whole issue of taking a leash from me and holding on to it for a while. He doesn't necessarily like to do it, but he's food driven. So I've started to incorporate a few treats in it to get him to, you know, be more excited about actually, the process of working and, again, I have to remember he's not quite six months old yet, so he's really doing well. He sits at the door, waits for me to go through it, and then comes out. Heels pretty good. Really the biggest issue is, he's a bed hog. He'll jump up in bed with me at night and try to push me to where he wants me at in bed verse, him settling around me so we have a few challenges, so to speak, coming up with a form of who's in control. Roll it at nighttime when we go to sleep. But outside of that, he's just been a fantastic dog, extremely intelligent, really wants to work hard and please. So it's the first time I've ever had a Labradoodle first time I've ever really been around one, and they're just a fantastic dog.&nbsp;So with that on to todays show. So in today's episode, I thought I would really kind of take it back to some of the basics. I'm seeing a lot of people that are newly diagnosed or have a spouse or a child with ankylosing spondylitis, coming onto the forums on Facebook and asking lots of questions. This is by no means going to cover everything. But it's really good, I think, a starting point for a lot of people and a really good possible spot to reset for many of us that have had the disease for quite a while. So I'm going to start off with basically what is Ankylosing Spondylitis or as we talked about in the last couple episodes, using the terminology, axial spondyloarthritis, to be more inclusive of the people that have non-radiographic axial spondyloarthritis versus the radiographic. Listen to the prior two episodes episodes 50 and 51 so that you get a better understanding of that terminology that's becoming much more commonplace.&nbsp;So, again, Ankylosing Spondylitis, we know is a form of arthritis that primarily affects your spine. It does affect many other joints besides your spine, but the spine is where they start to look for the disease in the beginning, and that in conjunction with your sacroiliac joints, are really the two primary areas that they try to focus on. It causes severe inflammation of the vertebrae. This can cause and might eventually lead to chronic pain and disability. In advanced cases, the inflammation can cause new bone to grow along the vertebrae and other areas and this can lead to deformity or what we call bamboo spine, the hunched over look. That's what you see if you were looking at a side view of me. Ankylosing Spondylitis can also cause pain and stiffness in other parts of the bodies, your rib cage, as I said, your...

Jayson:Michael, welcome to this episode of the Ankylosing Spondylitis podcast. And based upon the introduction and what we're going to cover today, I may have to change that name at some point down the road. Welcome to the show.MichaelThank you, Jayson. And thank you for having me. And yes, there's certainly time to change terminology around our disease.Jayson:Well, I was diagnosed 35 years ago, things tend to change slowly. So hopefully, I'll get around to figuring that out and what I want to do and how we structure it, but you know, you and I met through a forum on Facebook that deals with ankylosing spondylitis and the whole disease structure itself. You've made multiple posts that have been met differently with people's reactions on why the correct terminology might not be calling the disease itself ankylosing spondylitis, but maybe better off calling it Axial Spondyloarthritis. Tell me a little bit about that.Michael:Well, I can I understand why people are married to the next Ankylosing Spondylitis because like you that's what I was diagnosed with. And after my disease onset 40 years ago, but times change the technology changes, and also the name Ankylosing Spondylitis was never a universally used name, still isn't. In many parts of Europe, especially German speaking countries, the disease is referred to as Mobis Bechterew. In Russia, for example, it's named after Vladimir Bekhterev who was a Russian doctor who documented some of the symptoms of Ankylosing Spondylitis, but it's also been called Marie-Strumpell disease as well after two researchers who described the disease but what's more important, from our point of view is that Axial Spondyloarthritis is very difficult to diagnose. Originally, it was diagnosed by X ray radio graphically. So back in 1973, people recognized that there was a very common association with the gene HLA-B27 and spondyloarthritis. And looking into that further, they started seeing that people with Axial Spondyloarthritis or then called Ankylosing Spondylitis had this radiographic stage. And that was used as a diagnostic tool. There are no diagnostic criteria for this disease, but there are lots of different classifications. So, if you had radiographic sacral sacral le itis, and you displayed some other spondyloarthritis symptoms like family history or morning stiffness, etc. You were diagnosed with Ankylosing Spondylitis, then MRI came into being in the 1970s By the 1980s it was out there in the general hospital population and in general use and people who could read MRIs started noticing that if they were taking an MRI of the sacroiliac joint, they could see sacroillitis. But was this the same as the sacroillitis evident by X ray in Ankylosing Spondylitis? And there was a long debate about that. And that debate really wasn't resolved until the last year or two. So it's now understood that what we call Axial Spondyloarthritis is a continuum of disease from what had been called non-radiographic axial spondyloarthritis through to radiographic axial spondyloarthritis. So it's all recognized as one disease. And the important thing about that is that to exclude people, from patient organizations from help and support from the treatments available for Ankylosing Spondylitis, because they have non-radiographic axial spondylitis writers is extremely unfair. The disease burden is the same. Somebody with non-radiographic axial spa has exactly the same symptoms, the same pain, the same stiffness, the same mental issues as somebody who they ankylosing spondylitis. There's a further important part and that is that we know from a lot of evidence that the earlier the treatment, the better the outcome for the patient. So if you're waiting 6,7,8,9,10 years for diagnosis, and you don't get onto a treatment plan, until you're sort of seven or eight years into your disease progress. That's pretty serious, because by then you could have disfigurement, you could

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's really hard to believe this is episode number 50 and I really never thought that I would get this far. Well, it's not a huge number of episodes, it's still kind of a milestone and that I didn't know what would happen when I started this, if anybody would even listen. So it is kind of cool to reach that 50-episode mark. So I'm really happy about that. I also want to say that there's been a new addition to the family here for me, and that is my six-month-old Labradoodle named Bandit. He's in training to be my service dog, and I will be doing the training. He was started off by in a group called freedom fighters. I did an episode with a gentleman named Matt Burgess (https://podcasts.captivate.fm/media/27300c98-d40c-4e62-a9ed-85956c4a7f2e/as-ep-027-matt-burgess-freedom-fidos.mp3) a while back where I talked about Freedom Fidos (www.freedomfidos.org) and then got him, he’s now he's six months old. We're starting to do the training and he's picking up on a lot of stuff. We're already at good spots where we're going in and out of doors. With no hassle he sits down, waits for me to tell them it's okay to come to the door. I can tell you what, I've never had a dog that's done that before. So just that training is cool alone. I introduced him to me walking on crutches the other day to see how he would respond and he's done real well with everything. So listen, there'll be updates coming occasionally on how that's going and follow on Instagram, it's @as_podcast, where you'll see pictures of them and different things like that. So that's pretty cool, as we roll into this 50th episode, I also wanted to mention that we've climbed up and we're been now in a total of 89 countries. We've had other folks with Ankylosing Spondylitis listened to the show. So again, that's all wrapped up together. That's just amazing to me. So make sure you head over to spondypodcast.com and sign up for the occasionally when I feel like sending it out newsletter and make sure if you really could do me a huge favor. Go to the show notes of this episode, there's going to be a link to podchaser.com. I would love it, absolutely be grateful to anybody that would leave a review of the show. I'd love to ramp up the number of reviews out there on the show. I've received a ton of great feedback from so many of you. I'd like to see that reflected in reviews as well on podchaser.&nbsp;So that kind of covers those and let's get into today's episode. In today's episode, I want to talk about Axial Spondyloarthritis. Man, that's a mouthful to even just say, let alone think about. So what is Axial spondyloarthritis? Well, it is a type of inflammatory arthritis that causes lower back pain among other symptoms, you know, affecting not only your lower back but your si joints, hip joints, knees, spine. So there are two main types. There's Non-Radiographic Axial Spondylitis and then there's Ankylosing Spondylitis. Most people are going to be familiar with the term Ankylosing Spondylitis and hearing these other terms, put in there can be new for a lot of people. So we do know that Axial Spondyloarthritis can be debilitating and progressive, you know, so you always want to make sure you're seeing a rheumatologist as soon as you think that there's any type of issue you might be dealing with. Talk with your family doctor, if they can get you a referral to a rheumatologist to make sure that you're progressing on the right treatment path.&nbsp;Just in America, around five and a half million Americans have Axial Spondyloarthritis. You know, again, it's an inflammatory form of arthritis and it's associated with chronic back pain. In my case when I got it, it was really chronic hip pain. It was the si joints. When it came at me...

Jayson Sacco,Welcome to this episode of the Ankylosing Spondylitis podcast. Well, as many of you know, I started the show to just kind of be cathartic for myself and get some of my feelings about Ankylosing Spondylitis and how it affected me off of my chest, so to speak. But as I did it in the show gained popularity, and more and more listeners came about, I started noticing that there's one area I can't address. And that's what's it like to be a woman with Ankylosing Spondylitis? This is where I just ran into a fantastic young lady named Jes Hojsan. And I have her on the line. And we're going to talk about being a woman with Ankylosing Spondylitis. And, importantly, being a young mother with Ankylosing Spondylitis. Jes, how are you doing today?Jes Hojsan,I'm doing really good. Thank you, Jayson, so much for having me on the podcast. Yesterday was my Cosentyx day. So I'm definitely feeling better today than than I have been the past few days.&nbsp;Jayson Sacco,Great. So we talked about that. I'm on Cosentyx as well. And you had to take a little bit of a break for some issues. And so you took about a month off from Cosentyx and now our back building loading dose up so I hope you get some good relief from it like you were experiencing before you you took that little break.Jes Hojsan,Yeah, I'm really hoping that the higher dose and the reloading of the doses is really going to put me back to where I was because I was really starting to enjoy life again. It was really great. How old are you? I am 30 years old. I was 30 in January.&nbsp;Jayson Sacco,When were you diagnosed?&nbsp;Jes Hojsan,So I was diagnosed officially via MRI last October. I had really been struggling for a couple of years with this really debilitating soreness all over, but I can go back so far as being you know, 11-12 years old and having really bad back pain at the time when I had seen my daughter I was diagnosed with a really minor case of scoliosis. I was also a figure skater, which is a really high impact and really, you know, physical sport. So I, you know, my parents just assumed that you know that the mix of those two is what was causing me pain and I ended up quitting figure skating around 18. And, you know, my back bothered me, but it was so normal to be in pain, and it wasn't ever debilitating at that point that I just lived with it. It wasn't until three years ago when I had my son. He was a newborn and I really started to feel you know, this pain all over, I could hardly get down the stairs, some mornings. It was difficult to to just get out of bed and carry him down the stairs, he usually would have to take you know, good 20 minutes or so to loosen myself up and to get down the stairs. And I had gone to my family doctor and I had asked them about it and I was really just told that this is new mom pain I had had a C-section You know, you're getting less sleep, you're carrying a baby, this is all normal. So I, you know, there's nothing more I could do. I just figured that's what they're telling me. This is the truth. And I ended up nine months later; I became pregnant again with my second pregnancy. And, you know, throughout the pregnancy, I definitely had a lot of back and nerve pain, but that also was common in pregnancy. So nobody ever suspected anything more. My daughter was born. And, you know, as soon as she was delivered, I started getting that stiffness, really bad pain in my feet. My back was so achy, I, you know, was having a really hard time sitting down. And I finally said, I need to do something about this. And it did take me some time, took me switching family doctors getting someone who heard me and listened to me, and finally really pushed to see a rheumatologist, which I wasn't taken seriously there either. They told me there was no issue. They saw my spine x-ray, they said that there were some abnormalities, but they didn't feel...

Jayson Sacco:Welcome to this episode of The Ankylosing Spondylitis Podcast. I can't tell you how excited I am today to have Dr. Grace Levy-Clarke on today. The reason is that she is an ophthalmologist based in the Tampa Florida area. And one of the things that affects not only myself and I have the damage in my right eye to prove it, but many of us is the iritis/uveitis issues that we all deal with. So Dr. Levy-Clarke, how are you today?&nbsp;Dr. Levy-Clarke:I'm doing pretty good and I'm really honored to be here to talk to you and your audience.&nbsp;Jayson Sacco:Well the pleasure is all on my side. Now,we were talking a little bit as we got started, and I should have captured this previous but could you tell me I see a lot of people say oh, I've got uveitis or I've got iritis. They're not exactly the same thing, but they deal with the eye. Is that correct?Dr. Levy-Clarke:That is correct. So iritis is actually coming from the root word of Iris. So it's inflammation of the iris. And some of the older textbooks will call it an Iridiagnosis of eye colitis. So it's inflammation of the iris and the ciliary body. And the iris is the area in the middle of which you have your pupil. So when you have inflammation in the front part of your eye, that is called iritis, and it can also be called anterior uveitis.Jayson Sacco:Oh, interesting. So, when we go into an Ophthalmologist as a patient, and we have a flare coming up in our eyes, you are going to look at the eye and say, is this affecting front of the eye back of the eye? Does somebody generally, can they get both have the front and the back, inflamed at the same time?Dr. Levy-Clarke:Yeah. So you can have in inflammation that starts in the front of the eye and does not go anywhere else. It could start in the front of the eye and progress into the middle and into the back. Or you can even get the reverse. You can get inflammation that starts in the middle of eye and goes into the back or comes forward, but it's primarily when we give it a name. We're looking at where we think the initial focus of inflammation was. But we can look at the eye and at least tell you which parts of the eye are inflamed.Jayson Sacco:And I know there are lots of treatments from drops to, when I had my first recorded bout of, of iritis; we didn't know what it was. And it progressed to get worse and worse and worse, to a point where I could get up in the middle of the night and just the light from the streetlight would be like someone was stabbing me in the eye. And it just so happened that it was a Sunday afternoon and I said, I’ve got to go to the emergency room. We went there. And it was just by luck. There was an ophthalmologist there. And he came walking in. And he was he says,&nbsp;“You're lucky since I was just leaving. But he says, Let's take a look.”&nbsp;He goes up, I had, like cloths over my right eye and he said,&nbsp;“If this is what I think it is, you're not gonna like the possible treatment that I have to do if it's as bad as you're saying.”&nbsp;So he took the cloth off my eye, and he was Dutch. He was from the Netherlands. So he had a fairly thick accent. And I just remember him looking down and he goes, this is going to hurt you because he says you're going to get hit with all the you know, the overhead hospital fluorescent lights. And he pulled the towel off my I kind of opened my eye up a little bit and of course me I'm just gripping the table in pain. And he goes, all I can remember is the Dr saying “Oh yeah, that's a hot one.” Out came the first time and the only time I've ever had a shot into my eye.Dr. Levy-Clarke:So, you you're describing this classic what the...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope this show finds everybody doing well. In today's show, I want to look at the relationship between your microbiome and Ankylosing Spondylitis. The reason for this came about from looking at a few items online and in some of the forums on Facebook. I was seeing one particular thread I believe an example that there was a number of people giving definitive, this is how I got Ankylosing Spondylitis. This caused my Ankylosing Spondylitis and that might have triggered a flare that brought the Ankylosing Spondylitis to your attention, or made you notice some of the symptoms that made you look further into what was causing them. But at this time, there really is nothing that I've ever found that says the doctors can pinpoint to this one exact reason as to why you got Ankylosing Spondylitis. No, there are some different contributing factors and there are some items that again, may have happened that triggered the domino to happen and and Ankylosing Spondylitis to finally come to life. There's nothing that at this time, they know, this is what exactly triggered anybody's Ankylosing Spondylitis. And that's what's really frustrating for a lot of us with the disease, is that we all present differently. We all get different symptoms, different reactions to medications. And if you listen to my episode a few back with Dr. Fox (Episode 42), he said there are some tests coming down the road that could help to better pinpoint which biologics you'll respond to better versus others. And that way, it's not such a guessing game like there is now with biologics where it's like, well take Enbrel if it doesn't work take Humira, if it doesn't work, take this one. It might take you four, five, or six until you find one that works. And if they have a way to narrow that down to one or two, that in of itself would be a great start to treating Ankylosing Spondylitis. The real big breakthrough is going to come when they can figure out what underlying symptoms make you susceptible to having it at some point in the future. One of those things is the gene, HLA-B27. Many people have that gene and it doesn't mean that if you have it, you will develop Ankylosing Spondylitis. Because there's people that don't have it, that develop Ankylosing Spondylitis. So it's just one of those factors to look at. So I happened to be looking around on ankylosingspondylitis.net, which is a fantastic resource, that if you're not using it you should be. People with Ankylosing Spondylitis write many of the articles and the editorial team writes many. I encourage you to head over, it's just a fantastic resource. And it got me thinking, I found this article, which is where I tell the show about the relationship between the microbiome and Ankylosing Spondylitis. And I thought it was really interesting. I've also saw a lot of people coming onto the forum saying, I'm brand new. I need to learn. Where do I start? What do I do? So this is something that might be a good spot to start to think about as you try to develop your game plan for dealing with Ankylosing Spondylitis. What we know is that about 40 years ago, researchers found out that people with HLA-B27 are much more likely to get Ankylosing Spondylitis.&nbsp;HLA-B27 is a genetic trait associated with the immune system and the inflammatory conditions like Ankylosing Spondylitis. Well, scientists still don't know why. There is connection between Ankylosing Spondylitis and HLA-B27. They continue to study that relationship, and the potential link to help find further treatments for the condition of, of ALS and, and potentially other items. So, one of the areas that is being researched and I want to look at some more, and this is the microbiome. What is the microbiome? Well, all of us have trillions of bacteria living, you know, in us and on us on our bodies, you know, in our bodies, and this collection of bacteria is called your...

Hello and welcome to this episode of the Ankylosing Spondylitis Podcast. How's everybody doing yesterday here in the thumb of Michigan for spring, we were getting intermittent snow showers. So that really stinks. I'd love it. If any one of you could send some warm weather this way. I absolutely just enjoy the heck out of that.With that said, I want to touch base and do a couple housekeeping items. I really could use everybody's help. If they could take a moment to go to the link in the show notes and go to podchaser.com and leave a review for the show. It's a very helpful way for others to find the show, and I would be completely grateful for anybody that did it. So again, it's pod chaser, calm. You can search out The Ankylosing Spondylitis Podcast, and then if you would leave a review, I would really appreciate that. Also, if you go to spondypodcast.com, which is my website for the show.You can access all the prior episodes, some articles I have out there on different subjects, as well as a link to pod chaser and sign up for the newsletter. I call it the intermittent whenever I feel like sending it out newsletter, I don't send out a ton of them. I think I've sent two this year. So again, I don't send out a ton, but it's a great way for me to keep in touch with everybody and I have different things that come up on occasion to share with everybody. And lastly, in the show notes, you'll find a link to Teespring for the month of April. If you use at the ankylosing spondylitis podcast store in there, you can get 25% off your order by using the keyword April. So again, follow the link that's in the show notes. And I hope to see pictures of people wearing those shirts in different locations.&nbsp;Now, onto this week's show. I was on the website ankylosingspondylitis.net, which is a website I talked about in a previous episode looking around for a few things because I've noticed a lot of questions lately about I'm recently diagnosed with Ankylosing Spondylitis. What does this mean to me? These medications scare me. My life is going to end. You know, as I know it, all these different topics came up and I happen to come across an article that was called&nbsp;Living with a Diagnosis of Ankylosing Spondylitis. So I really wanted to kind of run through it. It's not long and related to how my life has gone with this Ankylosing Spondylitis diagnosis. I've been dealing with this for 36 years now since I was officially diagnosed. So let's take a look. Again, it's called&nbsp;Living with a Diagnosis of&nbsp;&nbsp;Ankylosing Spondylitis. We all know that having a chronic condition like Ankylosing Spondylitis, you know, can impact all of our entire existence, our entire lifestyle that we're used to, well, each of us is going to get a s differently. And you'll see from somebody like Dan Reynolds of the Imagine Dragons up on stage bouncing around look physically fit to somebody like myself who's on a cane hunched over had multiple hip replacements. We both still have Ankylosing Spondylitis. We've just dealt with the diagnosis is different mainly based upon when we were diagnosed and the medications available and what we know about it now versus what we knew about it when I was diagnosed. So there are many aspects of as that, you know, we can't control we can't control how fast the inflammation will take off. And all of us it's different. Mine came on very hard in my hips and my si joints to the point where as I've said, By the time I was 21, I'd had my first hip replacement and by 23, I had had my second hip replacement. That's Island usual there's many of you that will go your entire life with ankylosing spondylitis run, walk normal and never even consider a hip replacement. That's the huge variance. And why if you're new to ankylosing spondylitis, and you come on and ask the question, What am I in for? The only real answer is I don't know. Nobody knows. So that's what

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing well as we all face this lock down together across the country, across the world. Today I wanted to talk about an article I found in Creaky Joints, which is a website that I like to go to is creakyjoints.org and I'll have a link in the show notes. And it was really interesting because I've talked about a few of these items in previous episodes. The article is titled;&nbsp;Nine Ankylosing Spondylitis Complications you need to know about&nbsp;and it really deals with the comorbidities that we can encounter when we have Ankylosing Spondylitis. So as we all know, Ankylosing Spondylitis is a type of inflammatory arthritis that causes inflammation, you know, pain and stiffness, it predominantly affects the lower back spine and the sacroiliac joints, which are the joints where the spine meets up with the pelvis. Well, we asked what's behind all the inflammation that comes on and is basically body's immune system is releasing chemicals and attacking your joints causes pain, stiffness, and eventually long term joint damage. I've had that with my sacroiliac joints being fused, and the damage that was done to my hips, resulting in hip replacements. So compared with many other forms of arthritis, AS generally for most folks begins when they're young, I've seen people in some of the online forums say that they were diagnosed when they were as young as five, six years old. As I've said in other episodes, I had symptoms back as early as nine or ten that I'm aware of, and was diagnosed when I was 14. Many of us develop a lower back pain and it's worse when there's an activity or you know, when you wake up in the morning, you can have that stiff painful back and as you get moving in the day, it tends to lessen it can present an ongoing and dull pain throughout the day. That is like it's coming from deep within the lower back or towards your buttocks. Because back and hip pain are incredibly common. You know, it's easy for people with AS to chalk up the symptoms to other issues such as athletic or overuse injuries. AS symptoms aren't limited to our lower back. The disease can also affect like I said, the neck, peripheral joints, shoulders, knees, you know, hips, it can affect all of it. So all chronic inflammatory lower back pain can be a telltale sign of Ankylosing Spondylitis. The disease can have a wide-ranging impact on patient’s health and well being the inflammation and joint damage of as are linked with a number of additional complications. And it's important for us as patients to understand those and be aware of them and proactively try to prevent these or manage them as best we can. So let's go through these common Ankylosing Spondylitis, comorbidities and complications.Number one - Ankylosing Spondylitis and forward curve of the spine. This is something that I deal with a lot spondylitis can cause overgrowth of the bones in your spine. This can lead to fusion, which is the abnormal joining of the bones. “By definition Ankylosing Spondylitis affects the sacroiliac joints in the pelvis first, and then marches its way up to the spine,”&nbsp;says Maureen Dubreuil, MD, assistant professor of rheumatology at Boston University School of Medicine who specializes in spinal arthritis. It may not follow that exact pattern, but you can have involvement at any part of the spine, the neck, ribcage, and lumbar spine, so in the past, people with AS, develop significant changes in their posture over time. That's what I deal with, I am hunched over quite a bit so that when I walk, I am looking down at the ground and not up. It's actually very challenging for me to walk and look forward at the same time. It develops excruciating pain in the back as I try to straighten the spine up and it's very visible on x rays where you can see that that growth in that fusion in the vertebrae and in the spine, so it's...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this day is finding everybody doing fantastic, healthy and hanging in there as we all across the globe deal with the Covid-19 epidemic that's going on. So with today's episode of first off, I wanted to thank everybody recently, like few days ago, the show crossed a total of 20,000 downloads in total and it's still climbing spread across 83 different countries. Talk about bringing the Ankylosing Spondylitis community together. You know, I keep hearing from people across different countries and organizations and groups that all deal with Ankylosing Spondylitis and so it's really really cool to see everybody together and interacting on the different Facebook forums and talking and trading stories about how AS is affecting them. With that said, Today, I thought it would talk about myths and facts related to Ankylosing Spondylitis.You know, AS is a chronic condition, and it can be very difficult to explain to others, you know, as soon as you tell somebody, it's a autoimmune disease, they kind of maybe look at you not knowing what that means. Or if you tell them, it's a type of arthritis, they'll say, “Oh, yeah, my grandmother has arthritis.” Well, it's great that they're trying to relate, it's not exactly getting the point across to them that we hope to get across and so that's resulted in, you know, a lot of misconceptions about the disease and what the disease does to us. Heck, it even applies internally, because none of us get the disease the same. So what affects me generally probably doesn't affect anybody else, the same way to the same magnitude, and vice versa. They can have something that's very, very debilitating to them and it's really of no issue to me. So we gathered kind of some lists of myths, and I'll try to debunk those for you related to my Ankylosing Spondylitis that I hope you turn around and think about those myths and how they relate to your Ankylosing Spondylitis and how it may be beneficial or helpful when you try to explain what you're dealing with to others.&nbsp;Number One-Myth AS only affects your back. Well, we know that's not the case for everybody. When you talk about Ankylosing Spondylitis, they always talk about the main feature of as is that it affects your spine. And one of the main signs of the disease is inflammation of the joints between your spine and pelvis, you know, your sacroiliac joints, so inflammation can spread to the rest of your spine. It can go to lower back pain and stiffness or common symptoms, especially when you get up in the morning. But as is not confined to just your back though it can spread to other joints including shoulders, ribs, hips, knees, feet, or even, you know, up to 40% of people that have Ankylosing Spondylitis will get some form of iritis or, you know, issue of inflammation in the eyes. Now with my case, my Ankylosing Spondylitis came on extremely fast and hard when I was young in my hips. So by the time I was 21, and then 23, I had had hip replacements done. So I ended up with bilateral hip replacements by the age of 23. It wasn't until much later on that my spine started to become really affected. And now as I've aged, most of the Ankylosing Spondylitis has progressed up my spine, and now affects my neck. And so I take a biologic medicine, I take Cosentyx at this time, and I'm hoping that keeps it at bay from fusing my neck anymore than my neck already is fused. But I've got your classic Ankylosing Spondylitis posture. When I stand I'm hunched over and I'm looking at the ground in front of me not directly in front of me when I walk with my cane. So everybody's gonna be different. You may get it more pronounced in your ribs, or your knees or wherever. But think about that, as you explain it to somebody that will it does affect your spine and most likely will affect it at some point. There could be other areas of your body that are dramatically...

Jayson:Welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be really a neat episode because I've got James Allen on the line. James is a fellow ankylosing spondylitis person. And James has developed a really cool app called Chronic Insights. And James, how are you doing today?James:Hi, Jayson. I'm not too bad today. Yeah, you know, the usual ups and downs, aches and pains, as we all know, but yeah, today, I guess is about, I'd say, three or four out of 10 on the pain scale, so not too bad. How are you?Jayson:Oh, I'm doing great. Today was my Cosentyx day. So that means we're gonna have a good day. I've learned something new. As people that are listening to the show. I learned a new word and I want to share it and it's called Kip, and I have no idea that that's a British word for taking a nap.James:Yeah, sometimes if you're feeling really tired, you just need to go have a Kip for 10 minutes.Jayson:There we go. What a cool word man. That is awesome. So James, why we are talking is not only just because you have Ankylosing Spondylitis, but I first want to talk about Chronic Insights for a few minutes. Tell the listeners, what is it, what can they do with this app? Because it's really cool, but I'd rather have you tell them.James:So Chronic Insights is essentially, it's a symptom diary. It's an app that I've been working on for about a year now. You can it's available on the Google Play Store, and also on testflight, which is Apple's version of beta testing. So not officially released yet. It's really version 1.0. It's a bit rough around the edges and I'm looking to get people to try it out for me and give me some feedback. And what it does is quite simple really allows you to record your symptoms throughout the day, whether that's pain or fatigue, stiffness, anxiety, mobility issues, any symptom that you want to track. So it's mainly for people with chronic pain or chronic fatigue, people like us with Ankylosing Spondylitis, or other potentially other conditions as well like Fibromyalgia or other forms of arthritis, Endometriosis. I mean, the list is endless the number of conditions which involved chronic pain and fatigue. So you can record say, right now, I mentioned before, I'm probably about three out four out of 10. I can just record that in the app, it's captured. I don't have to remember that. I can also record where on the body the pain is. So at the moment, it's kind of my middle of my back right now, but throughout the day, it shifts and changes maybe it'll be my shoulders layer, or my hips, and so buying, tracking and recording throughout the day, you can then look back on your symptoms and see, what are the trends or the patterns? What are the things that I've trained that have potentially impacted my symptoms? And and what does that look like when you look at the, the graphs and the charts that are available? And what does it look like visually on the body, as are there particular areas of the body, they're affected more or less over, you know, on average. So that's, that's essentially what it does in an in a nutshell.Jayson:As you said, you can record the different items through the day, but you can record them the way the graphs are set up in there. If I'm having pain in my spine, I can actually pull up the copy of a skeleton and circle the spine. If I'm having muscle pain, I can pull up a full body image, not me but just have a representation and circle the part of the body that is hurting so maybe it's your rib cage and it's hurting one day, but it's your Left leg the next day. You can you can adjust and it's not just some, you know, static figure you're able to bounce back and forth between skeletal and muscular pain.James:Yes. I mean, that was one of the main goals of creating the app because there are other symptom...

Jayson:Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very lucky today to have on Dr. David Fox. Dr. Fox is one of the co-chairs of the University of Michigan's Autoimmune Center of Excellence. Dr. Fox has been a rheumatologist for a number of years, a member of the medical school faculty since 1985, Dr. Foxx is a professor of Internal Medicine, and from 1990 to 2018 was the chief of the Division of Rheumatology with the University of Michigan's medical school. You've gotten your undergrad from Massachusetts Institute of Technology and your Doctorate from Harvard Medical School. So fantastic training as you then jumped up to University of Michigan, Where you work through all the different wonderful areas that the University of Michigan's medical school has to offer. So, Dr. Fox, glad to have you here and welcome.Dr. Fox:Jayson, thank you very much. I'm very pleased to be chatting with you this morning.Jayson:Something that I find very interesting that you’re involved in is this Autoimmunity Center of Excellence. As we discussed prior to the conversation, there's about 12 or 11 of those centers around the US at different universities and hospitals. And what is the basic premise of an Autoimmunity Center of Excellence?Dr. Fox:It's a group of investigators that are conducting research in the treatment of autoimmune diseases and also trying to understand causes of autoimmune diseases. And these include forms of arthritis, other rheumatologic diseases like Lupus and Scleroderma, and autoimmune diseases that are in other areas of medicine, like for instance, Multiple Sclerosis, which affects the brain. Different centers have specific projects and clinical trials that they're working on. But a very important part of this Autoimmunity Center of Excellence or Ace program, as it's called, is that the different centers have a chance to meet a few times a year and interact with each other and have what are called collaborative projects where we get to work together with an experts at other institutions and benefit from their knowledge and hopefully they benefit from ours.Jayson:Now what I find interesting and these Autoimmunity Centers of Excellence, the ones we're talking about that you're involved with are all in the United States. Is there cross-country collaboration, like do you as doctors and researchers work with folks say in England or Australia or Canada, anything of that nature?Dr. Fox:Yes, we do. Not necessarily directly within the framework of this Ace program, but in other aspects of our research. We certainly work with physicians in other countries. One way that that occurs is in some of the clinical trials, particularly in our scleroderma program. Many of these trials are international trials. It's a rare disease. So we may need quite a few centers to Join up in a clinical trial to recruit the number of patients needed for you know, useful study. So we have collaborations with our colleagues in Europe and in Canada and occasionally other parts of the world.Jayson:Interesting. Your background, I know you've really focused on Rheumatoid Arthritis and the Scleroderma.&nbsp;Dr. Fox:Yes.&nbsp;Jayson:When we look at those diseases, how do they cross over into fields of say, like research for Ankylosing Spondylitis? Or can something that happens in Rheumatoid Arthritis say; oh, wow, this may or may not work for AS let's try it on AS patients.Dr. Fox:Yes. So there are similarities and also differences between these various diseases and sometimes we find out more about where the similarities and differences are by trying new treatments and seeing what works. So for instance, if you look at TNF blockers, so these are biologics that inhibit the action of a molecule called TNF (tumor necrosis...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's so great to be here. As I record this sitting in my apartment it’s March of 2020 and it's about 55 degrees outside here in Michigan. So I know that's not warm to many of you, but for this winter, it just tells us that now we're starting to head into spring and the warm weather is on its way and man that just makes me so happy.&nbsp;I received another review for the show and I just wanted to read. It is a five star review from the&nbsp;podchaser.com&nbsp;website. And if you ever want to leave a review for the show, if you're inclined, go to podchaser.com. You can find my show The Ankylosing Spondylitis Podcast and then go ahead and leave a review for it. So anyway, this review is from Liquid Soap and it says:Awesome, simply very humane and informative. I love it.I'm glad they're happy with the show. Glad you're happy with the show. I'm glad you're listening. And it's great to have you here today.&nbsp;I want to touch base on something that I read on one of the forums. It's the form called Living with Ankylosing Spondylitis and you can find that on Facebook. This was a posting done by Angela Coplin Robinson back on October 21st of 2019. I finally connected with her and she said it was great to review this. So I've wanted to review this for a while and it really, I think goes to the whole core of everything that we all think of with Ankylosing Spondylitis. I want to just read this because it's so powerful the way she wrote it. I don't think that there's anything really that needs to be changed because it's just, in my opinion, perfect. So I want to read it, and then add my commentary in certain spots, and at the end of it, and I hope this just really resonates with everyone listening because I just think this is perfect. In fact, Angela originally posted this message to her family and friends, and she writes:Tired of walking on eggshells around certain people. This will be quite a long post, but I want my family and friends to know a few things.&nbsp;1.&nbsp;&nbsp;&nbsp;&nbsp;I love each and every one of you. I might not go see everyone all the time. But I am battling a disease that sometimes controls everything in my life. When I'm in a flare, I don't venture out and these last few weeks have been hard. Now I'm coming out of one and feeling less defeated.&nbsp;2.&nbsp;&nbsp;&nbsp;&nbsp;I do everything in my own time. I clean the house, cook and do normal everyday things when I have less pain and more energy. If you walk into my home and see that it's not pristine. I'm probably in a flare. You all know I love a clean home and believe like modded a place for everything and everything in its place.&nbsp;3.&nbsp;&nbsp;&nbsp;&nbsp;My memory is shit. If I say I will meet you or call you back, you can&nbsp;&nbsp;remind me the day before or morning up. I forget words sometimes and stumble around in my own mind. Please help me remember, I do have a tablet that I write things down on if I remember to look at it&nbsp;4.&nbsp;&nbsp;&nbsp;&nbsp;When I tell you that I'm in such pain that I wish God would take me, it doesn't mean that I'm suicidal. I love life and I want to live my best life to see my kids, grandkids, nieces, nephews grow up. Just in those days. I can't see past some of this debilitating pain. Not all days are bad, though.&nbsp;5.&nbsp;&nbsp;&nbsp;&nbsp;I hate saying that I'm hurting all the time. So when you ask me how I'm feeling, I may just lie to not be complaining. I heard every single day, but it's a controlled pain. Only during times of flare, I'm in massive pain.&nbsp;6.&nbsp;&nbsp;&nbsp;&nbsp;I'm sick of doctors needles, prescriptions, and this disease period. I am trying Remicade infusion therapies on Wednesdays to try and stop the...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I'm really glad that we can connect and discuss these topics on Ankylosing Spondylitis. So first I wanted to read a new review I got from Susan in Tampa, in the United States. She left a review on iTunes for the show and she said,&nbsp;“I was very glad to hear Jayson talk about dating. My experience has been upsetting in that many men are unwilling to date or go further after the initial meeting, mostly due to the cane and the disabled appearance. I just want to stay in my house and not put myself out there. Well, thanks for all the great information, Jayson.”&nbsp;&nbsp;Well, Susan, you're welcome. I can certainly understand. As I've said many times I walk with a cane I'm hunched over from fusing and my back and neck. And so you know, I don't give off this great appearance of virility at all. I come walking up and I've had some women leave right as soon as I've walked up from the date without even saying more than Hello, once they see how I walk, so I can certainly understand it's not a good feeling. It makes you you know, we already as folks with Ankylosing Spondylitis can be dealing with feelings of rejection. So then when it happens from a complete stranger who you may have had some conversation via text maybe over the phone, thinking, Hey, I kind of get along and then to have that happen. You know, I certainly understand or there are the first dates but there's never the second dates. So Susan, I completely get it. Thank you so much for the review. If you're listening to this episode, contact me through the website spondypodcast.com on the Contact link. I've got an Ankylosing Spondylitis Podcast decal that I'll shoot out to you. So anyway, I really appreciate that review.&nbsp;Today's&nbsp;Question of the Week&nbsp;is actually going to tie into the entire episode. As I was reading through the forums on Facebook, one of the messages came out and it struck me as very relatable and it was from a young lady who was in a relationship and anytime she had something wrong related to Ankylosing Spondylitis, the other party not necessarily one upping her but saying, well, yeah I have this, you have that I have this you have that I have this. And well, neither party was wrong in expressing how they were dealing with their different ailments, the real issue boils down to one party, the person with Ankylosing Spondylitis wasn't getting the support that they needed. And that really is the crux of a situation I think a lot of us deal with this in relationships, whether they be intimate relationships, parental relationships, or work relationships. There are certain things we need for support from all the parties, different ways, but there's also certain ways we need to handle ourselves. So I wanted to kind of jump into that and this could be a little bit of a longer episode than normal. So I thought I would just kind of combine the two as we all know, having any type of chronic condition like Ankylosing Spondylitis or any other number of conditions can take a toll on not only our physical well being, but also our psychological well being. And I think the physical well being we can recover from and push forward through. Its that psychological well being that can be very, very difficult to correct, move forward, and overcome. And that's what we'll talk about to a degree today. So for anybody that's listening, that might be a caregiver or new to what Ankylosing Spondylitis is, in its simplest form, it's a type of arthritis that creates inflammation in the body. Generally thought of as affecting primarily the spine of people, the vertebrae, it really will connect and attack anywhere that there is the connective tissues and bone. Mine started off really, really heavy in the hips, move to the spine and other areas, but we're all Different it's going to affect us all different. So you know, over time, this long term...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this episode finds everybody doing fantastic. I have a huge favor to ask of everybody listening, it doesn't matter where you're at in the world, if you would go to spondypodcast.com and sign up for The Ankylosing Spondylitis Newsletter, and kind of poke around the site and take a look at it, I would really appreciate it. If you have any feedback, use the Contact page to shoot me back any feedback on the web page and tell me what you think what you'd like to see, you know, just what can I do to make it better for everybody. And then, if you are an Apple user, please go out to the iTunes and hit subscribe to the podcast so it gets delivered to you automatically. That really helps. Because the more subscribers that Apple sees for a podcast, then it turns around and shows that to more people. So the more people that subscribe, the better even if you listen on Spotify, if you're still an iPhone user, or any of the other podcast players out there, and you still happen to use it on iPhone, or computer, Mac, whatever, go out to iTunes, subscribe to the show. It just helps, you know, become better, accessible, better visible to everybody else that may be looking for something like this, I would really appreciate it. And if you can leave a review while you're out there, I love it. Once I get them, I'll read them on air and if you put your name in there or give a review, and then shoot me a message through the Contact page on the website and tell me what your screen name is, and that you want me to use your real name. I'll do that too. So whatever works, I'd love to give you credit for the reviews that you leave.&nbsp;So let's jump right into this week's episode with the&nbsp;Question of the Week. I happen to come across an item on one of the Facebook forums and it was do doctors take kickbacks? Well, the general answer that is Know. Now before you go blowing up my contact page, let me tell you why I say no. The reason is, is because kickbacks by themselves are illegal. A kickback is a payment of funds negotiated up front, usually for some certain type of treatment/service. So, no, there are no kickbacks in the medical field. But what we've all seen when we've gone into doctors offices is that sales rep come in with the lunches. Heck, with my general practitioner in Texas one time we were having an appointment, and he said, “Hey, have you eaten?” And I said, “No why?”. He goes, come on, let's keep talking about your treatment plan and it was when I was getting ready to apply for disability. And he said, Let's go grab a bite to eat, we'll talk about disability. And I said, Fine, let's do it. So we went down and everybody all the employees had already eaten so him and I just sat there and grabbed a bite in the break room and and talked about how to handle the disability application procedure. So that type of lunch happens a lot. But that's not considered a kickback. It's considered a business lunch and that happens in not just the medical field that happens at so many businesses. When I was in the brokerage field, both on the selling side and the wholesaling side, there was lunches, dinners, entertainment flying all over the place. So it's not just something strictly found on the doctor side, and I honestly don't have any problem with it. You know, doctor wants to bring in, that's fine. When my first child was born, she had an issue with reflux, and there was a special type of formula that we had to get for her to drink. This stuff was expensive and this is like 18 years ago. I think that seems to me that stuff was $35 a can. And when I went to the appointment with my now ex wife, we were sitting at the baby doctor's office, and I mentioned something about man, this stuff's expensive. Is there any type of alternatives to it? He said, unfortunately, there's not. Just as he said that, I heard him yell, hey, And I thought he was...

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic as this episode reaches you. It’s been just a great couple of weeks going on here as far as health wise, I mean, I've been dealing with some fatigue, but, you know, I hope everybody is feeling great, fighting the fatigue that you can keep up that good battle against Ankylosing Spondylitis.&nbsp;So recently I joined a service that pushes any reviews that that come in from anywhere in the world and I received two of them. One of them was from Australia, and it was from amwave, and this was from November of 2019. And they wrote,&nbsp;“I really enjoyed the well researched content and practical relatable tips.”Well, thank you and amwave, if you are listening, please reach out to me through the website&nbsp;spondypodcast.com&nbsp;I'd love to get in touch with you. The other review came in from the United States and it was left in January 19th by somebody that goes by wiscobri, and same with you, if you are listening, please contact me through the spondypodcast.com website. And they wrote,”Such a great podcast full of relevant conversations related to AS. Anyone living with AS will benefit from and relate to these open and honest chats.”That's what it's all about. I just want to do these things so that all of us that have Ankylosing Spondylitis can somehow relate, listen and not feel so alone. And before I do this week's&nbsp;Question of the Week, I thought I would point out that you may have heard an ad that I ran at the beginning of each episode The last few episodes for Joy Organics. I had Courtney Garber on an episode or two episodes ago talking about Joy Organics line of CBD products. So I encourage you to go out there and check there'll be a link in the show notes. Anything that you buy, it does create a small payment back to the show to keep it going. So I really appreciate it. If you follow that link and you're in the market for CBD products, I really appreciate it if you consider Joy Organics.&nbsp;So the&nbsp;Question of the Week, this week, I kind of decided to, instead of speaking a specific question, I'm going to pick one that I've seen a recurring theme for over the last several years, and that's something to use of DMARDs or otherwise known as biologics. And what I thought I would do is over the next few months, I'm going to start releasing some episodes, and doing some episodes on the DMARDs. There's really, I think, a lot of confusion out there. And I'm going to start at the maybe the 30,000 foot level, and then work down to a more more granular level of each type of product. I think some of the things that are being posted, may not factually be correct, but I don't know? The best way to to approach each of those. So I thought what I'd do is just anyway, do a number of different episodes, starting off at the real high level about biologics and working down to a more granular level, they won't all come at one time, they will come over a series of, you know, several months. So, you know, if you have really good or bad experiences with biologics, I'd love it if you went out to spondee podcast calm and contacted me to let me know what happened. And are you 100% able to relate that use of the biologic to the condition that developed where you told 100% by doctors that this is what caused it? We know this is what led to it? Or is it just anecdotal that you developed something around the same time that you took the biologic, and you're relating to that I'd love to know and try to see about putting some of that information together for a show as well. So you get no judgment. I don't. You're 100% able to believe anything. You want as far as what might or might not...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is your host, Jayson Sacco and I hope everybody is having a fantastic day. You know, personally these last few weeks, I've been really dealing with some what seems like extra amount of fatigue. And I don't seem to be the only personal loan as I read through the Facebook forums, notice a lot of questions on fatigue and how do you handle it? What do you do and where's it coming from?&nbsp;&nbsp;It sucks and whatever else, you know, people are talking about.&nbsp;So this week's&nbsp;Question of the Week&nbsp;is going to be what do I do about the fatigue? Well, we all know that with Ankylosing Spondylitis, we have increased inflammation, and that inflammation can lead to sometimes excessive fatigue depending on on the level of inflammation. So there's really a couple things we can look at now. In my case, I don't know if so much the fatigue is caused by inflammation or if I'm just not sleeping well enough at night, I think that's really my issue, not getting a quality enough sleep. When I do get some sleep, and I have a Cpap machine, and my mask just hasn't been sealing. My mask is old and I need to replace it. So I think that will fix some of the issues. But we all know that for a lot of us, the main culprit is inflammation and how does it dovetail in with creating the fatigue? Well, if you have inflamation issues, you know along your spine and your hips, wherever they can release a chemical that has a role in the fatigue that we deal with. So that's just one thing you want to think about is if you're feeling fatigued is the underlying symptom really inflammation that's just not being treated properly via medication. So we also know that with these we want to aim for sound sleep, which is me.&nbsp;So this particular paper that I was reading, gave a few tips. Some of these are easier said than done.&nbsp;Go to bed at the same time every night, including weekends.&nbsp;Well, that's fairly easy to do since I don't have much of a social life. So going to bed at the same time is usually not that hard.&nbsp;Take breaks throughout the day instead of naps.&nbsp;Well, that's interesting because I tend to fall asleep in odd spot. So you know, I can just konk out in the middle anywhere. So it's not really an issue of taking a nap. It's just a maybe a power 10 minutes that I might be out. Another item is&nbsp;do relaxing pre bed activities, such as deep breathing exercises.&nbsp;Avoid sleeping in on the weekends, or vacation days.&nbsp;I don't generally do that. I'm pretty much up between six and seven every morning.&nbsp;Take a warm bath before bed.&nbsp;That's probably not what I'm going to try. But if it helps you, great. I'd love to have a hot tub. I think that'd be fantastic. And then&nbsp;regulate the temperature in your bedroom. Well, mine stays, you know chillier than the rest of the house. But that's just a function of the way that this particular place is built. So another thing you can do is&nbsp;check for anemia. I know I have anemia and I take 50,000 IUs of iron once a week. But if you're getting frequent headaches, dizziness, shortness of breath, or have some pale skin, that could be signs of anemia, and you want to talk to your doctor about that addressing that might help you sleep better. I think it's really a function of doing all of these but you know, address each one, one at a time. There are some dietary considerations. I know myself, my snoring, which is my sleep apnea is a function of the weight I've put on, I need to lose a fairly large amount of weight for me, and I think in doing that, I would have less sleep apnea and thereby less fatigue, and maybe less inflammation.&nbsp;Get some exercise....

Welcome to this episode of The ankylosing spondylitis podcast. This is going to be a little bit different of an episode today I'm really excited. I've got Courtney Garber on and Courtney is the Assistant Store Manager and CBD Educator of the Fort Collins, Colorado retail store for Joy Organics, which is a CBD manufacturing company, retail sales. They just cover all sorts of different angles and have a great line of products. So I'm really excited to have you on Courtney, how are you?&nbsp;Courtney - Good. How are you doing? Jason?&nbsp;Jayson - Fantastic. I'm really excited because CBD is one of those topics that there's so much information out there and there's so many people that want to consider it for their chronic pain issues, anxiety, whatever it may be, and they just don't know where to start. So it's really great to have somebody on that can kind of take my listeners by the hand and start them on the journey.Courtney - Yes, and I appreciate you having me on.&nbsp;&nbsp;Every day I encounter people that just have gotten a lot of misinformation from the web or even from family and friends. So it's really good to have educational material to kind of clear up a lot of these issues.Jayson - It is because there's so much being written about CBD, that it could help things like anxiety, PTSD, chronic pain, Parkinson's, epilepsy and the list goes on. But I think the key is, let's say that I was, you know, or any of my listeners were to walk into your store, where would you start with them? How do they even know how much CBD to take? What products appropriate? How do you guys help them determine that?Courtney - Yeah, so often when people walk into the store, the first question we asked them is what brings you in today, they will reveal like what they're trying to treat. They might even come in specifically asking for products that will help with this. What we do at the store is we don't like definitively say this product is going to work for whatever you're trying to treat, kind of just describe how the different products work, and then they can make an informed decision what they think will work best for their condition, and we often describe to CBD does affect everybody. So Individually, it does take a little experimentation in the beginning to find the right product and the right milligrams to take.Jayson - I wondered about that. So like a lot of drugs, things like weight can even affect the amount of your dosage. So is that something you find also with, say CBD oil is somebody that is a 250 pound guy is going to need more than 120 pound woman.Courtney - You know, interestingly enough, so often when people come into the store and from our feedback, it's not necessarily by weight. We have a lot of repeat customers in the store. So we do get a lot of feedback. Sometimes people need very small amounts and sometimes people need very large amounts. It really depends on how their endocannabinoid system is functioning. So when we recommend milligram strength for people, but with CBD, it does affect everybody. So individually, a perfect example is my significant other. We both have taken the same amount of CBD for pain issues. And for him, it made him drowsy. He does weigh more than me. I'm a pretty slender woman. So often people will just start off with a low milligram amount and increase it until they're getting the effects they need. Some people do require just a small amount to feel the effects more some people do need a larger amount other people do need to take it kind of consistently for a few weeks to really benefit from the full effect. We have a lot of customers that use the lowest drink tincture for sleep and we have some customers that need to take two of our highest drink soft gels for sleep so it does really very often I will ask people if they're sensitive to other medications and supplements and usually that's a prime candidate for

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope everybody's doing fantastic today; I apologize if the audio quality is off a little bit. I'm fighting a bit of a head cold, so I can't really tell if I'm sounding clear or not. I'm real happy to be here today and be able to record and talk with everybody about what I think is a really cool resource.&nbsp;But first, I want to do this week's&nbsp;Question of the Week. You know, as I was going through the Facebook forums, I happened to come across a very simple message that somebody had wrote, and it just said,&nbsp;“I can't go on anymore.&nbsp;I can't do this anymore.”And I thought about it in, you know, my first response was, yes, you can, because we all have been there. We all have thought that, you know, it gets to a point where there's any given time where your pain is pretty severe and you just think I can't do this anymore. But as people with Ankylosing Spondylitis, we can do it, we do do it. We do it every day, we do it every hour, and we just survive. That's the way it goes. Now, that's not to take away from anybody's pain and say that it's less or that it doesn't belong or that they're thinking about it the wrong way. Because we all have that pain, we all deal with it. First, if you really do think that you're in a potential where you're going to hurt yourself, there is the&nbsp;National Suicide Prevention Lifeline at 800-273-8255. So first, if you do really think that you may hurt yourself, please reach out to them or reach out to anybody that is on the forums. There's just a bunch of great, great people that are willing to talk with you, listen, empathize, and work through any issues you're dealing with. So again, when I see these messages of saying I just can't do it anymore. I certainly understand we've all been there, but please reach out and get the support you need, if you're not getting it from a significant other, or family member, reach out to any of us on the boards. There's just a great number of people there that would be willing to talk with you, I'm sure, either through chat or through a phone call to make sure that you are in a good place. So, don't ever think that suicide is your only option. I did some research and a new study published in the Annals of Internal Medicine found that 10% of the more than hundred thousand suicide deaths included in that study occur to people with chronic pain, though the study you know, can't prove that chronic pain was a contributing factor. The lead author Emiko Petrosky, medical epidemiologist with the Center for Disease Control, did note that mental health issues were more common among those with chronic pain, and that the proportion of suicides by people with chronic pain had increased from 2003 to two Thousand 14 as the number of people with chronic pain rose. So the answer isn't that people with chronic pain aren't strong enough. They not that they just need to toughen up as so many people tell us if you have chronic pain, you know, you know what it's like to deal with some get the appropriate help, whether that be reaching out to the Suicide Prevention Lifeline, a therapist, family, or just any of us. We're here to help support you in any way we can.&nbsp;Now, onto this week's topic. A few months ago, I came across a great website called&nbsp;ankylosingspondylitis net. Now, many of you may be familiar with it. I actually was not at the time when I came across it. And it found it to just be a fantastic reservoir of information. There are tons of articles on the website written by people with Ankylosing Spondylitis. So it's not that it's just people telling us how they think we might feel. It's really people that are dealing with Ankylosing Spondylitis. And one of the contributors and how I found the website was through Jed Finley, who hosts one of the Facebook forums/pages called Living with Ankylosing...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I know I've said it before, but I've got to say it again. We've hit over 12,000 downloads across the world with this show. If it wasn't for all you listeners, none of this would be possible. I love hearing from everybody. It has been just amazing to hear everybody's stories of how they have dealt with AS, and I wanted to point out I got an email the other day from a listener. And this one was really cool and it's reads;&nbsp;“Hey, oh my goodness. I'm so thankful I found your podcast. Thank you. I'm in Namibia and for so long. I have felt so alone. I felt so many times that people think I'm making it all up. It's crazy and my doctors in South Africa because there isn't even a rheumy here. People don't understand. Anyways, listening now to Loss of Our Old Life and I can so relate. I'm so sorry for all you have gone through. I lost an eye and then also had cancer. Like so many of us losing so much and yes mentally it’s such a hard battle. Thank you for raising awareness!!!Thank you! Without listeners like you, I wouldn't be doing this. I started this off just to kind of bring out what my experiences were. But now, it's grown into so much more as I get to hear from everybody from all these countries around the world. There's like 195 or 192 countries in the world and we have had downloads from at least 71 of them. Means over a third of the countries has had somebody access the show and at least listened to it once. That's amazing to me. So and it's again, it's all because of you guys, all of us who have Ankylosing Spondylitis, and the caregivers of people that have Ankylosing Spondylitis. I absolutely thank you from the bottom of my heart for all you've done to help make this show so successful.And now, under this week's&nbsp;Question of the Week, as I was going through Facebook forums, I noticed a question that said,&nbsp;“Do you feel that you're using your Ankylosing Spondylitis to be a victim or have a victim mentality?”&nbsp;&nbsp;So I kind of read that a couple times, and this is going to be completely my feelings on this, but I got a little bit angry because I've been dealing with this for so long. Let me preface that by saying, my feelings are not your feelings, we're all going to have this differently. But I thought about it. I said, I didn't ever want to be a victim, to appear to be a victim. Even after multiple hip replacements, fused back, fused SI joints, fused neck, there was plenty to say poor me, but I really have wanted to spend my life trying to find the good side. Now, yes, all the damage AS has done to my body is not good. But the good side of it is I've met some phenomenal people and all of you across the world who share AS with me, and that is something that I can talk to any of you and we're all going to have similar experiences and be able to, in many ways empathize with each other, consoling each other.&nbsp;So I saw this article, there's an author, Lisa Marie Basile, (see link at end). And in early January of 2020, you know, just this month, she wrote an article; it's titled,&nbsp;As a New Year Begins, I'm Seeking the Silver Lining with AS, and I thought what a great title. In the article, she goes on to discuss what she's dealt with in her life, and how it's adjusted her viewpoints on different things. She had a challenging childhood and she says, “I found strength and resiliency instead of weakness and fear”. And that's really what I want everybody to try and take away from this. If you go through the pain of Ankylosing Spondylitis, the challenges that we deal with having Ankylosing Spondylitis the day to day just activities, trying to get them done, raise kids, you know, work a job, all of it with Ankylosing Spondylitis, that instills in you a strength and resiliency that many others do. Have, they may look fine on the outside, they may be capable and...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Wow, am I excited to be here today! It is really amazing as I looked at the stats the other day.&nbsp;&nbsp;I want to welcome people coming in from all over the world. We've had listeners pop up from Portugal from Costa Rica, from Guatemala, from Ecuador! Add that into, you know, Morocco, Algeria, England, Canada, the United States, South Korea, India, Pakistan, Switzerland and Turkey. You know, they're just coming in from everywhere. I'm so excited to see this. So excited to connect with everybody that's got ankylosing spondylitis, and bring everybody together to at least enjoy the show and know that they're not alone.&nbsp;On this week's episode, we're going to be talking about CBD, whether it be CBD oil, gummies, cream, or&nbsp;vaping, I'm going to bring the little bit of knowledge that I have, and hopefully, get some more experts in here later on during the year that can talk far more in-depth about CBD and how to use it to the best of everybody's advantage.&nbsp;Remember, I am not a doctor. These are entirely my opinions and not to be taken as medical advice. So please, if you have any questions about the use of CBD oil for yourself, consult your family physician, your rheumatologist, whoever you see, to talk about what you should and shouldn't be doing with it.&nbsp;So what is CBD(cannabidiol)? Well, CBD is a compound derived from hemp. Yes, it can be derived from marijuana but we're going to be talking about the type derived from hemp. It can help soothe joint pain. And you know, it's been talked about for anxiety and a whole number of other things as well but we're gonna be looking at mostly joint pain for the use of CBD oil and in this particular episode, so it's always referred to as CBD for short. It stands for cannabidiol, also known as CBD, and many people will rave about it for its health benefits and potential medical benefits. There have been some studies done on it and shown that it may help with anxiety. There are some other childhood diseases and seizures that they're looking at, like with children, post traumatic stress disorder. So those are whole different topics. But again, there are a number of areas being looked at to use CBD oil. So you might be wondering how does it help people with Ankylosing Spondylitis, or in this case, even just arthritis and they're still trying to link all the different pieces together as to what it can do. But there's a lot of anecdotal reports from patients and some basic research that showing that it may help in a lot of areas that people talk about it. Now not everybody's going to react to it. You may have tried it and not had any reaction to it. I've been on it for probably 30 days now. You know, honestly, I can't tell you that it's made a difference or not made a difference. Maybe I'm calmer now so maybe it's helped with some anxiety. Pain wise, I haven't noticed a whole lot but I think it's really been more anxiety for me.&nbsp;CBD is a chemical that's derived from hemp. Both hemp and marijuana are both types of the cannabis plants. But obviously as you know they're very different from each other with marijuana containing THC tetrahydrocannabinol and hemp well it does have some THC it's generally .3% or less so it's not enough to get your high off of or anything of that nature. But you know, obviously hemp and marijuana are very different from each other in the amount of obviously THC as well as the CBD percentages. But again, that's all changing because as these different folks grow the marijuana plants and get better at the cultivating of them. They're able to raise that CBD levels much, much higher in the plants than what it was, you know from nature did.&nbsp;By altering cannabinoids, you can inhibit or excite the release of neurotransmitters, which are brain chemicals. They play a role in modulating the body's...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I want to welcome you to another episode where we're going to talk about something that affects all of us to various degrees, fatigue.What is fatigue and how to potentially fight it? So how do you know if you're dealing with fatigue or if you just plain tired? Well, as I was searching around, I saw this great article from a website called creakyjoints.com and as I read through it, it made me think of some things that I've seen posted on the various Facebook forums. Everybody talked about this fatigue kind of had to stop and think was that person maybe tired or is it fatigue? What brings about fatigue? And one person even said, you know, “Fatigue is just like it's taking all of my energy” and so I thought that was kind of interesting.&nbsp;In reading this article, it talked about what is fatigue versus being tired. Fatigue is a symptom you need to pay attention to because there's a red flag for so many underlying diseases. It's often the driving symptom that leads patients to come in and eventually get diagnosed, says Ellie Cohen rheumatologist in New Jersey. Medically speaking. You know, fatigue is characterized by feeling of weakness and chronic lack of energy. I can certainly relate to this. A number of years ago, I had moved and I had boxes to unpack in my new home and just the thought of, you know, when I got home from work, sit on the couch for a minute to collect my thoughts and just the thought of trying to unpack a box, exhausted me before I even lifted a hand to do anything. I'd fall asleep right there sitting on the couch. Yeah, I had worked eight, nine hours that day. But my job wasn't that taxing. So I was a little concerned. I couldn't figure it out. Talked to my doctor. For me. It became an issue with testosterone. Mine was extremely low. And when you top that low testosterone off with taking about 3600 milligrams of gabapentin a day. I just couldn't function properly. So we adjusted and I went on an injectable testosterone, I switched up some of my medications and how I took them and that helped immensely. But for all of us it's going to be different is either going to be medication, disease, or some combination of the two. So there's really like five questions you can think about when you're looking at is it tiredness or fatigue and those are :1.&nbsp;&nbsp;&nbsp;&nbsp;Do you wake up tired even after a full night's sleep?&nbsp;2.&nbsp;&nbsp;&nbsp;&nbsp;Do you find it difficult to muster energy for activities you enjoy or you know are normally excited about?&nbsp;3.&nbsp;&nbsp;&nbsp;&nbsp;Do you skip important daily activities? You know, like showering or do you take a day off work because you're just too exhausted to even think about them&nbsp;4.&nbsp;&nbsp;&nbsp;&nbsp;Do you sleep, you know more than seven, eight hours at a night and still wake up tired.&nbsp;5.&nbsp;&nbsp;&nbsp;&nbsp;has the exhausted lasted you more than a week.&nbsp;If those are how your feeling and any given day, you know what you really want to talk to your doctor about that because it's probably fatigue and not just simply, you know, you need a couple extra hours of sleep, because even extra sleep isn't going to help you pull out of that fatigue. So, when we look at this, we say, well, what can cause fatigue and chronic illness?&nbsp;Number one is pain. You know, if I'm in pain, and my body has to continuously process how to deal with that pain, then there really isn't a lot of energy for other things. So having to then take energy off to think about cooking or communicating with other people or any of that just is something that can't even mentally comprehend, or even want to deal with and what can cause the pain is inflammation. If you're having a lot of inflammation, even a flare that can really, like I said,...

Hello, and welcome to 2020. This is The Ankylosing Spondylitis Podcast and my name is Jayson Sacco and thank you for joining me today. You know, as many do on this first day of the year, I've been reflecting on my life and my interactions with Ankylosing Spondylitis. You know, I've been dealing with Ankylosing Spondylitis and its effects on me for about four decades now. And in those four decades, there are many things I could have done much better that might not have put me in the position I'm in now, and those items will discuss over the upcoming year in different episodes.But first the&nbsp;Question of the Week. This week, I’ve seen quite a bit on the forums on Facebook dealing with Ankylosing Spondylitis, and chiropractic care. Now, I'll tell you first that the reason I was diagnosed and found out what was going on was due to a chiropractor. He had worked on me for a number of years as a child and just said, I can't figure out exactly what's going on because he's not responding to generally what we should you know, be seeing as results from the treatments he's done. So it was because of him that I was referred to, you know, a rheumatologist who diagnosed me with Ankylosing Spondylitis for that, it turned out great. But fast forward to now, you know, 40 years later with the level of my Ankylosing Spondylitis is, and the amount of fusing that I have going to a chiropractor would be the wrong thing to do. And so you have to remember that there's no one fit scenario for all of us. As a general rule, the Spondylitis Association of America recommends that you do not have chiropractic care done. That is because you may have a chiropractor that's completely unfamiliar with Ankylosing Spondylitis, and what their adjustments you know, may or may not do. So like everything else with Ankylosing Spondylitis, it's really going to be dependent upon each individual. If you have very little to no fusing and you're just in the process of discovering what Ankylosing Spondylitis is, and your chiropractor is completely familiar with Ankylosing Spondylitis, it may be okay. But again as a general rule, the farther you are into AS, the less likely that you should be probably visiting with a chiropractor and stick more along the lines of traditional medicine routines. For other countries, the guidelines may be slightly different or completely different. Always check what the chiropractor knows about Ankylosing Spondylitis, the familiarity they have with it and just make sure they don't try to adjust your neck or crack at or snap it or anything like that, that can cause you additional pain or even worse, maybe even paralysis. So anyway, again, this one is going to be real simple. It's just chiropractic care should I or shouldn’t I is really dependent upon each individual so you are the only one that can make that call? Just know in the United States the general rule is no chiropractic care for anybody with Ankylosing Spondylitis.&nbsp;Now, the article that I kind of was reading through for this week's episode, (it’s found on healthline.com) is called&nbsp;Nine Resources for Ankylosing Spondylitis Support. We talked about some support in the previous episode and I'd like to cover that, again, with Ankylosing Spondylitis, and I've experienced this myself, you can very easily fall into the trap of isolating yourself due to pain. Even in a household of people, you can isolate yourself. And so where do you turn for support? Where do you turn for assistance in the day to day activities of dealing with Ankylosing Spondylitis could be a spouse, but then there's those of us who are not married or dating that don't have a spouse or partner to turn to. So you've kind of got to look at the different options. And here's nine of what is available.&nbsp;Number one, Message Boards. You know, there are places like the Spondylitis Association of America, and they have a message board....

Hello, and welcome to The Ankylosing Spondylitis Podcast. I can't believe this is the final episode of 2019. So as I wrap up 2019 and look towards 2020, it's just been a fantastic run this year. This is the 30th episode of the show and I wanted to do something a little bit different for this episode. As we look at having Ankylosing Spondylitis and interact on the message boards on Facebook and on the various websites like ankylosingspondylitis.net, I think about the things that I've experienced through the years dealing with Ankylosing Spondylitis, whether it be relationships, the highs and lows of marriages, dealing with family members, work, everything comes into play and I’d really like to take 2020 to be the kind of year of support for Ankylosing Spondylitis. What can I do? What can we all do together to not only better support us, but also find ways to get support from the people around us? So as we roll out of 2019, I came across an article on healthline.com (I'll have the link in the show notes). It's called&nbsp;Finding Support and Talking About Your Ankylosing Spondylitis. That can be very challenging for many of us. As I've said many times, I was diagnosed when I was 14. I didn't meet another person with Ankylosing Spondylitis till I was 26, maybe 27. So it was about 13 years till I meet another person with it, or at least that I was aware of. There was no internet, there was no anything to look up and find information. You went to your rheumatologist twice a year, and what information he gave you is all you really knew about it. There was no way outside of that, that I was aware of at those times to find additional information. So what's available to everybody now is fantastic, but you know, just In the US, spondylitis affects at least 2.7 million people. And I know from the show having been downloaded on 59 different countries, there are lots of people around the world that are dealing with Ankylosing Spondylitis or have loved ones that have Ankylosing Spondylitis. We know that that number is exponentially higher and it doesn't include the people that have it but have not been diagnosed are fighting to get diagnosed. So that number will do nothing but continue to rise. Why? Don't know, hopefully medical research can figure that out as go forward and future generations will either have less amounts of people with it or the best case no people with it.&nbsp;So how do you get support? You know, it's challenging enough as we all know to pronounce Ankylosing Spondylitis, let alone to explain it to anybody around us, our family members or occasional acquaintances or our job, you know, may seem easier just say to somebody I have arthritis and then just try move on from there. But that really minimizes the condition that you're going through in their mind when you say they being people you tell, if you just say you have arthritis and are very nonchalant about it, they're not going to understand the pain and more importantly, the fatigue that you deal with Ankylosing Spondylitis. So Healthline came up with a series of seven things to help as we go forward with getting support.&nbsp;Number one, ditch the guilt. It's not unusual for someone with a s to feel that they've let their family or friends down. I can certainly attest to that. Well, it might be normal times to feel that way. You don't have to. I can't tell you the number of times I felt guilty for not being able to do certain things with a spouse or girlfriend or feeling guilty about not being able to keep up with friends as they were go go go or, more importantly, to do the things I wanted to do with my kids as a father That I just couldn't do now, on the flip side, what I did learn is that kids are extremely adaptable. And mine never looked at it as that you couldn't do these things at least, they never said that outright to me. But what they did do is become extremely adaptable to helping me at the times I had them for the summers and...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's going to sound like a broken record, but I just can't thank all of you listeners enough. It's been incredible the numbers that I keep seeing on the show, we've now been downloaded in 58 different countries. To me, that's amazing. When I went about making the show, it was going to be only in English. And I didn't really know what kind of reach the show would have. But 58 countries is amazing, we've literally circled the globe. It's great to see everybody that is enjoying the show, and finding some type of comfort from it, entertainment value, whatever, and then turn around and contacting me and saying how you like the show. So it’s been fantastic and it's been really interesting. The downloads coming out of Switzerland have been huge. So whoever's in Switzerland enjoying the show, I hope you just keep enjoying. I'll just keep making the shows for everybody around the world. But it's neat to see these downloads come from different countries.With that, I want to go to the&nbsp;Question of the Week. This question was brought about kind of by video I just watched where a young lady recently diagnosed with Ankylosing Spondylitis was very upset just with the overall you know, everything of dealing with being diagnosed with Ankylosing Spondylitis. That video kind of broke my heart. As many know I was diagnosed a long time ago and my remembrance of being diagnosed is non-existent. I just have Ankylosing Spondylitis just is what it is. It's been part of my life for 35+ years. So when I see somebody that's recently diagnosed or read about it, it kind of breaks my heart as they go through all the stages of understanding and dealing with what a diagnosis means.&nbsp;With that said, I wanted to point out a website that many of you may be familiar with. If you're not, this might be of help. There's a website called&nbsp;ankylosingspondylitis.net. What I like about that website is all the resources&nbsp;&nbsp;&nbsp;available. There's a community section about it a basics, Types of Spondyloarthritis, Signs and Symptoms, Being Diagnosed, Treatment, Living with AS, Mental Health, and then some special sections. And there's just a ton of articles out there that are about Ankylosing Spondylitis. I think there are a lot of good things that we can all take away from it. As far as being diagnosed if you're new to this treatment options, again, if you're looking for different ways to help yourself feel better, and I'll have a link in the show notes to&nbsp;ankylosingspondylitis.net. I think it's a great website. I encourage you to go check it out. Look around, you can make a profile and then if you want to tell your story, you can. You can share your story with others, so that it just becomes a more robust community and you get feedback to help you give feedback to help others. It's really I think, just a neat website and a neat resource for all of us to utilize&nbsp;This week's episode was started by a posting online that I was participating in. We were all kind of having some fun with it. You know, there are all sorts of things that people will tell you to do, generally well meaning and they'll come up to you and say, Well, I know your back is hurting. So try this or you know, go swimming or whatever they tell you. Everybody started a thread based on the pet peeves that they heard, and I pulled out about 23 of them and they kind of make you chuckle. So really, take this episode with some levity, enjoy it and just know that most of the time these people are not meaning anything negative. And just sometimes you’ve got to kind of roll your eyes and say, “Yea, thanks. I never thought of that before.” and move on. Be as snarky as you want or be

Hello, and welcome to The Ankylosing Spondylitis Podcast. Can you believe that this is almost the end of 2019? Man this year has just flown by. It's been a really, really interesting year for me from the great highs with this show, the great numbers that have come in and the positive feedback I've got from everybody about liking the show, to going from highs like that to dealing with the passing of my father in August and the whole dynamic that created for me. I know I'm grateful for the almost 75 years that he was around and he was here for me. So that was fantastic, but I’m not going to lie. It still stinks to you know, I want to call him. Even though he didn't have Ankylosing Spondylitis, he and my stepmother listen to all these episodes, and were two of my biggest cheerleaders for these episodes. It’s fantastic to know the years that I had with him.&nbsp;So with that, on to the show. Now for the&nbsp;Question of the Week, this is going to be a little bit different because I happened to be online and I saw a posting from a fellow AS person in Australia named Tieran Brownlee. He posted an article, now I'm going to butcher this so up front, I apologize, but it is from the xinhua.net, and I'll have a link to it. So don't try to write any this down. It was dated December 7, 2019 and it says&nbsp;Scientists uncover potential nuclear of “bamboo spine”, otherwise known as Ankylosing Spondylitis. So here in Taipei, team of scientists from Taiwan uncovered how the human gene HLA-B27, triggered Ankylosing Spondylitis, which might lead to symptoms of bamboo spine, leading them to find a promising new cure for the disease. Can you believe that? The words Ankylosing Spondylitis and potential promising cure don't even seem like they should be in the same paragraph. So a collaborated research team led by a Dr. Lin Kuo-i with Genomics Research Center of the Academia Sinica in Taiwan, and they found the gene HLA-B27, triggers a miscoded protein response, and then a series of abnormal signal transduction, which eventually causes an isozyme called “tissue-nonspecific alkaline phosphatase” (TNAP) to be highly activated. The elevated tip was demonstrated to be the cause of bone like cell formation around a person’s spine, the research team sent a press release. So that's the extent of the article I'm going to read. There will be a link in the show notes to it and I would encourage everybody to read it. It really caught my eye because farther down you'll see that researchers have found that two existing medicines that are already out there to treat items may be possible cure for Ankylosing Spondylitis. So they may have stumbled across something. As they look at this, we don't know. It's from China. It's not anything that's apparently maybe cleared through the FDA. So it could be years and years and decades away. We don't know. But it's definitely an interesting article to read. So I hope you all go out and read that article, and I'll have a link to it.&nbsp;Now, on to the main topic of today, this week, as I was looking through some ideas about what to do for the show, I happened to be going through one of the Ankylosing Spondylitis forums online and I saw some people talking about you know, I hate it when somebody says this, right I hate it when somebody says that in relation to Oh, my back is bad or Yeah, I had AS but I cured it. You know, people say the craziest things to you. I generally like to think the best of people in that they aren't trying to be mean or be off putting their generally trying to be helpful. They just realize they're not being helpful. They're actually being a pain in the rear sometimes.&nbsp;So I have to come across this article by Ricky white. That name sounds familiar. I did an interview with Ricky few months back for the show. He has Ankylosing Spondylitis. And the last episode, we talked about his book called&nbsp;Taking Charge -...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Again, the show continues to grow by leaps and bounds and we've now been listened to in 54 different countries. I bring that up and tell you all just to share it with you and let you know that this community of us, all of us with Ankylosing Spondylitis, it's huge and it reaches across the globe. So it's really exciting to see when we get a new country come in and listeners from those countries and then sometimes I even get emails from some of those in different countries. It's really great to see that even though we're spread around the globe. We all come together with this thing called Ankylosing Spondylitis and can relate to it. It really makes it seem like it's not such a small thing that that were so alone. That was really fantastic. And let's jump into the question of the week. This week. I saw a person thinking or discussing that they were having a lot of issues with dealing with the diagnosis of Ankylosing Spondylitis. We've all been there; all of us have processed it in a different way. This particular person was very blunt in their writing, which was very good to see, it meant that they had been thinking about it a lot would be my laypersons opinion, they were upset, they were unhappy with realizing that certain things they used to do with ease, they could not do at least to the same standard anymore. And again, I think we've all been there. I know I have, I look at different things. You know, I used to be able to do this so easy. Now it takes me a Herculean effort to take out the trash, something as mundane as taking out the trash. I am on a cane. I have to do everything one handed because I always have to use that cane to walk and that really presents challenges like even something as simple as I decided I needed to clean off my kitchen counters the other day and just you know, do a standard cleaning and wipe everything down. It takes forever because I can't move everything with just here. I'm playing with this hand, put it over here. I've got a good move everything one handed. And it was really interesting to me that I realized it took me almost two hours to clean the kitchen countertops, not because they were dirty, but because it took me that long just to move stuff clean, wipe it all down and then put everything back and I said that probably would have taken an able bodied person 45 minutes tops to get everything done. So I was certainly able to relate to what she was saying and I know in reading from other posts of other folks that get out there and say, Look, I I'm upset about this or upset about that or I missing doing this or I'm missing doing that, whatever that might be. And it's really just something I think that we kind of have to come to grips with Ankylosing Spondylitis. We have to like it. You can fight it to a degree. Some of us are less affected by as than others but are affected differently. Again, everybody's going to have to go through this process as they kind of grieve for what they used to be able to do. Look forward to what they can do, and how best they can do it. I want everybody to be safe, happy. And it's never good having to deal with this, we have a unique position and that we're dealt a poor hand so to speak, but you have to make the best of it. There are people that care about you want you to be safe, wants you to be happy. So I would encourage you to please reach out to anybody, if you're having a down day, build that support network. We've all been there and we all look to be there for each other. So again, I hope everybody is able to best process this as they deal with AS and what they can and can't do. Get a good therapist if you need assistance that way. There's nothing wrong with that. Talk to priests, Pastor, Minister, therapist, whoever best fits your support network of who's going to be able to be there for you. Some times it's best if you find somebody that has AS as well, because we can...

Hello and welcome to this episode of The Ankylosing Spondylitis podcast. My name is Jayson Sacco and I thought we would cover today some new best practices for rheumatologists in working with Ankylosing Spondylitis patients.&nbsp;Now these are updates that came about from the annual rheumatologist meeting that was held earlier this year. These are the guidelines from the American College of Rheumatology, the Spondylitis Association of America and the Spondyloarthritis Research and Treatment Network and they've updated their guidelines on the management of Ankylosing Spondylitis and Nonradiographic Axial Spondyloarthritis.&nbsp;First I want to touch on the question of the week. This one was kind of interesting. I saw a young lady post something on Living with Ankylosing Spondylitis on Facebook that she was having rib pain and was mentioning that to her rheumatologist, and they said that they thought it was unrelated to AS and there really wasn't anything that they could do for that rib pain. I started Looking through it I personally know rib pain can be an issue where your ribs attached to your spine, and also where the ribs come together at the front of your chest. Those areas are prone to inflammation and then again are prone to fusing. Everybody's going to get a different some people may have a lot of pressure and pain in the ribs. Others may have very little I've been lucky to have very little but I have had it and I know it's painful in the show notes. I'm going to have a link this was from posting I found from the UK Ankylosing Spondylitis Association, and they talk about good as your ribs can become a flame, the ribs can become a flame, you know, like I said, where they attach with the spine, and that can lead to stiffness and eventually fusion. If you have a doctor that's telling, you, ribs aren't generally affected or anything of that nature. You know, just a quick Google of rib pain and Ankylosing Spondylitis will bring you a number of articles. So remember that they can be affected One of the things you can do as a patient is make sure you're doing a lot of deep breathing. You're doing exercises to keep your ribs flexible, and even when it hurts. Keep doing that deep breathing. If you're doing swimming, it helps lightweight exercises, nothing heavy. You're not trying to build huge muscles. You're just trying to keep all that stuff around your rib cage fluid. The more you exercise your ribs, like anything else that deals with Ankylosing Spondylitis, the better off you'll be. So again, in the show notes, I'll have a link to this and you can read it. It's real short couple paragraphs long.&nbsp;With that, let's go on to some of the new guidelines for treating Ankylosing Spondylitis. The last time these were updated, actually drafted was 2015. In that four-year time period, quite a bit has changed, you know, a lot more information’s become available about the diagnosis and then just treatments evolved. There's more biologics that are available now and something to point out in here that I was kind of wondering about seems like they're actually starting to look at as well, these guidelines will be in the show notes (at end of this), I'll have links to these articles. These guidelines help to ensure that rheumatologists, healthcare professionals have current knowledge across the board about what are best practices for treating somebody with AS.&nbsp;There was 86 recommendations, we're not going to go over all 86 of them. There are really a few that I think are the real important, but again, the article I have links to those so you can go out and research them. They were again disseminated to rheumatologists but not only were disseminated by but we're coming together by the American College of Rheumatology, Spondylitis Association of America and like I said before the Spondyloarthritis Research and Treatment Network, really what they're trying to do is if they can get everybody kind of...

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I decided in this episode I was going to kind of revisit some of the areas that we had already touched upon and some issues I’ve been having with my right eye brought this upon.&nbsp;I started looking around I said, you know, I've kind of touched about all this, but I'm going to tie them into this package of nine possible complications that we can come into from having Ankylosing Spondylitis. The actual nine possible complications came from an article in Medical News Today that I'll have linked below. But a lot of these are all things that those of us that have Ankylosing Spondylitis need to be aware of, we need to watch out for this.&nbsp;If anybody's listening for the first time, Ankylosing Spondylitis is a chronic autoimmune disorder. Anyone that's diagnosed with AS needs to be aware of these complications, that it can present to our health, both physical health and mental health.&nbsp;There are a lot of things that we need to be aware of. So first, this week's&nbsp;Question of the Week, saw a post yesterday that kind of touched me it was one where the person said that they were really kind of feeling ignored by everybody withdrawn. No real social life, at times, maybe despondent, maybe it's a little touch, but I'm going to use that word despondent, many people and what some fantastic to see jumped right on and told this person, hey, you're walking around here, and I understand how you're feeling. But you know, chin up, all of that is great to support the person. I love seeing it. But this person's emotions were not wrong. As I touched on in the last one, they have to own their whole scope of emotions, and then deal with it in the best way that they can. So I hope this person gets any type of therapeutic help that they need, build a support network, even if it's support that you don't physically see the people but you talk to them online. All of that is Good because we know that this disease can really affect you socially. And overall it can just be a real, a real isolating type of item and we'll talk a little bit more than nine items. So anyway, I saw that I was really happy to see everybody jump right in and discuss with this person. So kudos to everybody that is listening that takes place at the forums participates and offers a friendly shoulder to cry on so to speak when it's needed. I really enjoy that about this community. We're going to look at the complications as we've said, Ankylosing Spondylitis you know as a type of arthritis, and if based upon triggering painful inflammation in the body, whether it be in the hips, the knees, the feet, the elbows, the, you know, ribs, whatever. As the condition progresses, if the inflammation remains unchecked, other complications can arise in our life. It's very important to get the inflammation controlled that can be done by diet that can be done by medication. or some combination of all of the above. If you're having questions, not sure where to start, talk to your doctor. These items I'm going to go across just so I can get this out there. I am not a doctor. This is not specific medical advice related to you. It's for informational purposes only. If one of these sounds like it's something that you are having a struggle with dealing with, or concerned about, consult your doctor talk to him or her so that they can help you work through the stages of what needs to be done to alleviate this problem or head off this problem.&nbsp;Number one, eye problems we all know about uveitis. I write on the type of conjunctivitis that you might get through having Ankylosing Spondylitis. As I've said in previous episodes, you really want to have now this really applies more to the United States because I'm not sure how doctors work in other countries), but if you have Ankylosing Spondylitis in the United States, you really want to have an...

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be the 23rd episode already. This is fantastic. In this episode I'm going to talk about, you've been diagnosed with Ankylosing Spondylitis. Now what? First I want to recognize that it's just been amazing. The number of downloads I've seen coming through for November, is looking like it could top October, which was a record month. So thank you to everybody that's listening. Thank you for all the feedback I've been getting. We've also had some people checking out the show from a couple new countries, South Korea, Bulgaria, Singapore, and Honduras. So welcome to those new places, and also a flurry of people out of Ireland have been downloading the show. So to all the listeners, Thank you so much. So let's jump in and do the&nbsp;Question of the Week.What was I going to talk about?&nbsp;Question of the Week. Oh, yeah.&nbsp;Brain fog. I don't know about y’all, but I've seen this discussed multiple times throughout the forums. I get these brain fog episodes. I get things like I can't quite comprehend anymore, and I myself get that. I do a weekly trivia game and there's answers that pop up that I know. I know them and I just can't think of them or I want to say something to somebody and I, I sit there and it just rattles around my head. I'm like, “I know the answer”, but why can't I get this out?Well, forgetting names, losing words, trouble concentrating. You know, brain fog is common. It can be disturbing. I don't like getting in and I'm sure nobody else does. It can be thing that causes concern when you're at work, if you forget things, will I forget things? Did I forget something? All that can play into your stress related to work and maybe even trigger a flare if it gets too bad?&nbsp;A study done in 2018 that was on Rheumatoid Arthritis patients, not Ankylosing Spondylitis patients, but I think there are enough similarities that is of interest in that study found that they think that there's a connection between inflammation and cognitive dysfunction. The inflammation disrupts signals between pain receptors in the brain literally fogging up mental functioning. That's very interesting. So I'd be curious if anybody's brain fog gets worse during a flare, have you noticed it? Have you noticed in times of high stress, your brain fog gets worse? You know, now, I haven't had any writing or spelling issues result of that. I'd be curious to know if any of you guys have mine is just recalling certain things. My recollection of facts and figures gets real murky.&nbsp;There are also some medications that may potentially cause some brain fog. One person I saw blamed their brain fog on Humira. I don't know if that's true or not, that's just what I saw them saying. Other drugs, such as prednisone, it's put out there to reduce inflammation, but it can sometimes affect cognitiveIssues. Again, I found nothing that said these were long-term effects. They were more short term when. drugs were in your system. There's also some cholesterol lowering statins, which may contribute to brain fog. I'm on one of those. And that may also be part of the issue. See, there we go. Couldn't get the words out.&nbsp;I'm going to do this, I suggest you do this as consult your doctor. I'm not a doctor. None of this is, you know, hard and fast medical advice is just to make you aware of some issues so that you can bring these up and talk to your doctor about them. So you're not going crazy. Most likely, these are not long term permanent effects they may most likely are medication effects. So again, talk to your doctor, see what he or she says is the best course of action going forward. I've seen one person and this is only for states where it's legal, obviously, who swears by cannabis to control the brain fog. It's not something I've tried, but whatever works...

I apologize about my stuffiness in this episode. My allergies were really bad…Hello and welcome to this episode of the Ankylosing Spondylitis podcast. It's really great to have you all back for another episode. This is going to be an interesting one; it's going to get a little deep, maybe a little heavy. First I want to start it off with an email that I received. This person named Shawn wrote me and said,&nbsp;"Hey, Jayson, I know it's late at night. I want to let you know I myself have Ankylosing Spondylitis. Diagnosed last year, May of 2018, I found your podcast and a Facebook thread and I've started listening to your show on Spotify. I've downloaded every episode and I'm listening to them all. Now there are so many things I can relate to that you speak about and I really appreciate the awareness you bring to our disease It really helps me to keep focused and not feel alone, (there’s that key thread not feel alone). Just wanted to say thank you for doing what you do. And hopefully we can keep in touch much respect for me a 41 year old male from Canada with AS.”He and I traded a few more messages afterwards and discussed a little more in depth what he was going through and some of the similarities even though he was just recently diagnosed. Some of the similarities of things that he had encountered that I'd encountered were really interesting. It was great to talk to Shawn.&nbsp;Anybody that reaches out to me, I hope I've responded back to you. If I haven't, I really apologize and send me another message because, I'm not sure how I missed it and I apologize if I missed any messages from anybody.&nbsp;So back to the episode I want to start off first with the&nbsp;Question of the Week, when I look at the forums, I see a lot of talk about&nbsp;“I have AS and my parents, my spouse, my co-workers, they all just say stay positive. If you keep a positive attitude, you can overcome it. If you have positive thoughts, they can help you through some rough times.”I came across an article that was pretty interesting, written in Healthline by Angie Ebba from June of 2019. The article and there will be a link in the show notes was titled&nbsp;“Stay Positive’ Isn't Good Advice for Chronically I’ll People. Here's Why.”&nbsp;Now, let me preface this with a few things. I tend to try and always say, if anybody asks me how I'm doing,&nbsp;“I'm doing fine, doing great.”&nbsp;You know, those are just the standard go to responses. Everything's good. We all know that with a chronic illness, we all can suffer from depression. It's just normal because you're constantly in pain. And you look around co-workers, friends, spouses who aren't dealing with these items, and it can just really play with your psyche and put you in a depression. As we look at that, if we have a spouse say,&nbsp;“Just stay positive!”&nbsp;or a parent that says&nbsp;“Just stay positive”,&nbsp;You know, you get through this, we know that they don't understand the pain and the issues of what a person with chronic illnesses/ chronic pain deals with. I want to believe that they're not saying that to be mean, or know what to believe that they're saying that to really be helpful to you, really to try and bring your spirits up, but I don't know if that works for all of us.&nbsp;I know for myself, it took me a long time to come to grips with the pain that I deal with. After my last hip replacement on my left side, (it was the third hip replacement), the doctor had damaged the nerves in my leg, and I now have a drop foot on my left leg and no feeling from the knee down. I went through all the various emotions. I used to like to hike, I was semi active. I liked to walk around, all the things that we take for granted. And now I walk with a cane and for two years, I was on crutches. So I went through all the emotions of grief about I couldn't do...

Hello, and welcome to The Ankylosing Spondylitis Podcast. Well, this is the month of November and I hope everybody's doing well. First I want to take a minute to talk about the show itself. I cannot thank everybody enough for making October just an amazing month for the show. The download numbers were through the roof and the feedback I got on the episodes was fantastic. So I really appreciate that and we added in a number of new countries that have access to show Let's get right into the show for the Question of the Week, I saw several people asking the same question online and it is can Ankylosing Spondylitis be inherited? Is it an inheritable disease you know, from one family member to the next generation to generation, in essence, it can run in families. In one of those markers, they used to look at it as the HLA- B27 gene. Now having this gene doesn't mean that you will get Ankylosing Spondylitis, but it is one of those markers that they look for. I found this kind of interesting in that research has shown that more than nine out of 10 people with AS carry the HLA-B27 gene, that's pretty amazing. It's almost 100% of everybody has it having this gene does not necessarily mean you'll develop as, as I said, it's estimated eight in every 100 people in the general population have the HLA-B27 gene, but most do not have AS so if you have it, you may end up getting AS but it doesn't mean you will. It also shows that's one of things you can look at it and family members and this particular person in the Question of the Week, they were wondering if they should have some family members tested for it because they and the other sibling had it. So I kind of replied back that it's not going to hurt anything. It never hurts to know if that gene is present because it could go along to explaining some future medical conditions if they run into AS it's also something to know that as we said as can run in families that gene can be inherited from familymembers to family member and if you have AS and test show you carry the HLA-B27 gene and their is a one in two chance that you could pass on the gene to any children you have is estimated that between five to 20% of children with this gene will then go out and develop AS that's still quite a wide variants of it. I have three kids they were all tested for the gene and if I remember right to came back with it, one didn't maybe all three had it. I don't remember exactly what it was, but they were tested and I believe my two older ones did have the gene one is showing some effects. I don't know if she'll come to grips with it. And hope you know, personally, I hope nothing ever develops of it. The other one is not nor is the youngest one. With that said, let's move on to today's topic of discussion. The Question of the Week done, let's look at this week's topic. You know, when I was diagnosed with Ankylosing Spondylitis, I was told a couple of things. Now,granted, you know, this was 35 years ago, so a lots changed. But when I was diagnosed, I was told this is primarily a man's disease, you'll rarely if ever see it in women. And it's primarily disease people of Mediterranean descent.What we found out is that is obviously not the case. So we know that today all these advances have been done in the research for Ankylosing Spondylitis that in fact, women get it probably just as much as men. I found this really cool article and it talked about different things dealing with a woman's diagnosis with Ankylosing Spondylitis. Again, as we've all heard, and been told women don't get it, but we know that that is incorrect. And I've had to do is look through the boards on Facebook, you'll see that there's just a ton of women dealing with this condition. So as we know, Ankylosing Spondylitis is an inflammatory form of arthritis that we get that starts in our SI joints or spine moves up the spine and then or can...

In this episode, I speak with Riley Cook about her Ankylosing Spondylitis and her service dog Gatsby and the various ways he helps her on a day to day basis.. Riley has been dealing with AS for about 10 years. A few years ago she decided she needed a service dog and took on the task of training Gatsby herself to perform the needed tasks. Gatsby can help Riley with a number of daily tasks like helping to steady Riley when walking, bracing for Riley when Riley needs to stand up, picking up items from the floor, pulling Riley’s wheelchair and so much more.You can connect with Riley at her Instagram page (instagram.com/gatsbygoldenservicedog). Riley also has an apparel company called Aware with a Flare (awarewithflare.com).&nbsp;Riley mentioned the following service dog organizations:Palmetto Animal Assisted Life Services -&nbsp;https://paals.orgCanine Companions for Independence -&nbsp;https://www.cci.orgThere are numerous organizations that are available to try and assist people with getting a service dog. Here are some additional services/resources:Americans with Disabilities Act FAQ -&nbsp;https://www.ada.gov/regs2010/service_animal_qa.htmlPaws with a Cause -&nbsp;https://www.pawswithacause.orgHere is a link to an article from Ageless Paws discussing a service dog for dealing with pain management -&nbsp;https://agelesspaws.com/need-service-dog-pain-management/Finally, here is a link to the International Association of Assistance Dog Partners -&nbsp;https://www.iaadp.org

In this episode, I present a brief history of Ankylosing Spondylitis.&nbsp;&nbsp;But first, the Question of the Week; on one of the Facebook Forums, I saw a question related to leg neuropathy from hip surgery. Getting leg neuropathy from a hip replacement is a known issue that you can encounter. While both the Orthopedic Surgeon and the Anastesealogist are working on you during a surgery, your nerves can be damaged in a number of ways.&nbsp;&nbsp;Here is an article that discusses it&nbsp;https://online.boneandjoint.org.uk/doi/pdf/10.1302/0301-620x.99b1.bjj-2016-0430.r1In the above article, it describes Nerve Palsy after total hip arthroplasty. This is the condition that I had and it ended up causing damage to the Sciatic and Femoral nerve resulting in drop foot and no feeling from the knee down in my left leg. It is a very good read and something you should discuss with your surgeon before a procedure.In dealing with the history of Ankylosing Spondylitis, it’s probably easiest to lay out the past as follows (thank you to&nbsp;MedicalMarijuana.com).History of AnkylosisAnkylosis has a long history, which includes these events:·&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Early in the second century CE, the physician&nbsp;Galen distinguished it from rheumatoid arthritis. (Galen,&nbsp;Commodus)·&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;In a&nbsp;5,000-year-old Egyptian mummy, people who examined the remains found skeletal evidence of “bamboo spine,” or a total fusion of the vertebrae.·&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;In 1559, surgeon and anatomist&nbsp;Realdo Colombo described&nbsp;what may have been the condition. (Realdo Colmbo)·&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;In 1691,&nbsp;Bernard Conner published the first account of skeletal pathologic changes&nbsp;linked with ankylosing spondylitis. (Bernard Conner)·&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;In 1818,&nbsp;Benjamin Brodie became the first doctor to document&nbsp;an individual thought to have ankylosis along with iritis. (<a href="https://en.wikipedia.org/wiki/Sir_Benjamin_Collins_Brodie,_1st_Baronet"...

In this episode, I look at 10 natural ways to help cope with Ankylosing Spondylitis.&nbsp;&nbsp;As with anything related to the treatment of your medical condition, please consult with your doctors about any exercise or procedures you want to try.&nbsp;I used the following article as a basis for this discussion:&nbsp;&nbsp;https://www.healthline.com/health/ankylosing-spondylitis-natural-treatmentI outlined my experience with:1.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Stretching2.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Heat Therapy3.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Cold Therapy4.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Acupuncture5.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Massage Therapy6.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Movement7.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Exercise8.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Alexander Technique - www.alexandertechnique.com/teacher/northamerica/9.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;TENS Therapy10.&nbsp;Stop SmokingAs always, take care and discuss any of these with your doctor. I am not a doctor and this is for informational purposes only.

In this episode, I cover six things that I do or have done to help combat depression partially related to Ankylosing Spondylitis.&nbsp;First I do a Question of the Week. A question listed online asked if stress could trigger a flair. I came across this&nbsp;article&nbsp;that discusses this very item. I also include some personal insight into this topic.I also discuss ways that I have tried to cope with depression. It never fails for me, that as the weather transitions from summer to fall here in Michigan, I get depression setting in. I HATE winter and with AS find everything I need to get done takes much longer. I found this&nbsp;article&nbsp;that outlined some things I do to help combat depression. They are:&nbsp;Exercise - My exercise is limited, but I know that when I do my stretches and pushups I feels better.Sleep Well – I have sleep apnea and have started using my CPAP more to help correct this.Get Educated – I started getting more information on depression, AS, and other topics that I knew would help to combat the “winter blahs”.Get Support – I’ve made a bigger attempt at reaching out to fellow AS Warriors to build up my support network.Manage Stress – You can pick any number of ways to manage stress. I like to use meditation and yoga. I put links below to YouTube videos on both topics.Seek mental health counseling – Please consult a professional if you find that you are not having luck with getting to a better spot mentally.Thank you very much for reading this and listening to the show.Yoga for people with arthritis -&nbsp;https://youtu.be/RJ8kQPSug0UMeditation for Beginners -&nbsp;&nbsp;https://youtu.be/F0jedwTzIJgSee below for transcript:Welcome to this episode of The Ankylosing Spondylitis podcast. In today's episode I want to talk about or cover dealing with some ways of dealing with depression. It's beginning to be that time of year again, in the Northern Hemisphere where we roll into fall and then winter's coming. For me personally, that generally means the onset of depression, the days get shorter, the weather gets crappier and it's just an overall time that I don't particularly care for. I know I'm going to be cooped up more inside where I live. So for me, it's a time of year when I have to really make sure to consciously fight depression and not succumb to it.&nbsp;I'll go over some of the things on fighting depression, but first on this episode I wanted to touch base with and do what I call the Question of the Week. I was going through the different forums on Facebook and I saw this question,does stress cause flares and make your AS worse? Well, I did a little bit of looking around. You know, with stress, we all have stress, you know, if you're working, you've got the stress of work and getting yourself there and just daily life and everything else. But if you have Ankylosing Spondylitis or any other type ofchronic condition on top of daily life, that can just be that extra push to cause many more or increased days of inflammation. One of the things looked at is, you know, AS which affects your spine can affect how you move, walk, feel anything because you use your spine all day long.There have been some that looked at the links between stress and inflammation, and there was a study in 2017, and I'll have all

In this episode I review and article from drugs.com that discusses The Top 16 Myths About Ankylosing Spondylitis Treatment (https://www.drugs.com/slideshow/ankylosing-spondylitis-treatment-1065). I tackle each myth and apply how I am affected or if I think it is Fact or Myth.I apologize for sound, I forgot to set the microphone for recording and episode was recorded from computer microphone.Also, in mentioning food, I meant to say that the types of foods you don't eat can help to reduce inflammation.

In this episode I discuss my experience with -iritis. If you have Ankylosing Spondylitis, changes are you will get -iritis at some point. Here is my thoughts on -iritis.

In this episode, I take a basic look at Sacroiliac Joint Pain. In my last xray of these joints, I was totally fused. This fusing of the SI Joints affects everyone with AS at one point.

In this episode, I review an article titled 10 Things Not To Say To Someone With AS. I applied my experiences to this article and I encourage you to do the same.   Mentioned in the show:   https://www.healthline.com/health/beyond-back-pain-with-as/things-not-to-say#1 www.tm.org

In this episode, I look at some basics of biologics like Enbrel, Humira, Cosentyx and my experience with those items. There are numerous biologics available to patients with Ankylosing Spondylitis and the correct one for you may take some time to find as you try different options and your rheumatologist tracks your health.   Below are some links to articles that discuss biologics in very basic terms.   https://www.healthline.com/health/beyond-back-pain-with-as/will-biologics-work#4 https://www.healthline.com/health/beyond-back-pain-with-as/biologic-science#4 https://www.healthline.com/health/beyond-back-pain-with-as/biologic-options#1

In this short episode, I discuss my fusion journey and some of the things I encountered as well as some of the things I do now to fight off fusion. I reference the following two articles in this episode:   https://www.healthline.com/health/progression-of-ankylosing-spondylitis#who-is-affected?   https://www.healthline.com/health/ankylosing-spondylitis-men-and-women#1 If you are looking for great vitamins, or CBD oil I would ask that you consider purchasing from my webpage. It doesn't increase your cost but does allow my site to earn a small commission to help keep this going.

In this episode, I cover some of the basics of my process to get on SSDI. My case was unique compared to many, so please do your research if you are applying for SSDI. My information is in no way legal advice, so please consult an attorney for any specific questions you may have.   The place to start is the Social Security Website. Here is a listing of what you need to apply for disability (https://www.ssa.gov/hlp/radr/10/ovw001-checklist.pdf). There are also some good sites that provide disability information. Here is a list of some I have looked at. Please be aware that some of these sites are from attorneys and I am not recommending that you use them. I just like the information that is provided.   https://www.disability-benefits-help.org/cpc/about-ssdi?utm_source=bing&utm_medium=cpc&utm_term=ssdi&utm_content=SSDI%20vs%20SSI&utm_campaign=SSD+-+Phrase&__egma[MatchType]=p&__egma[Device]=c&__egma[Creative]=77790493266508&msclkid=9652b544f2f219c51abae872d4a03694   https://www.spondylitis.org/Spondylitis-Plus/social-security-disability   https://www.disability-benefits-help.org/disabling-conditions/ankylosing-spondylitis   Videos  https://www.youtube.com/user/ginsbergssd

In this 9thepisode of The Ankylosing Spondylitis Podcast,  I go over 11 tips that can help to live with chronic pain. This article (https://www.webmd.com/pain-management/guide/11-tips-for-living-with-chronic-pain#2) from WebMD discusses the 11 items. Here is a starting point for meditation if interested. This YouTube video (https://youtu.be/KQOAVZew5l8) can give you a spot to start, but you can also do your own search to find a course you like.   If you are looking to eat better/loose weight, here is a link to Vinnie Tortorich’s website (https://vinnietortorich.com).   Here is Gina Grad’s food blog for food using the No Sugar No Grains method of cooking (https://grainfreecomfortfood.com).

Lets talk about sex, intimacy, and being with your partner. In this episode I speak with Susan Bratton.   Susan Bratton is considered the Dear Abby of Sex. She's a problem solver for sexual situations. And she extolls wisdom that comes from helping sexual seekers with reality-based, 21st century solutions.She writes books, publishes online sexual home study programs, does TV appearances, speaks from stages, has an AMAZING (and sexy!) YouTube channel and Instagram feed and the energy to perk you up and give you more than hope... Susan gives actionable advice you can take to the bedroom.I'm thrilled to have her on the show and she has a free gift for us today from her Amazon #1 international best seller, Sexual Soulmates called, The Sexual Soulmate Pact. http://sexualsoulmatepact.com   You can find Susan online at Susan Bratton - https://susanbratton.com Twitter - @SusanBratton Instagram - @SusanBratton YouTube -  Susan Bratton – Better Lover Please share this podcast with your family and friends that have Ankylosing Spondylitis or are with someone with AS.

In this episode, I chat with Gina Ryan (theanxietycoachespodcast.com). Gina assists people in an online group sessions or one to one sessions to deal with anxiety. Gina’s podcast (podcast episode index) can provide you with a wealth of information to assist you and provide you with some insight into how Gina can assist you. You can interact/connect with Gina via her website, Facebook, Twitter, Pinterest, Instagram, and LinkedIn. You can subscribe to the podcast via iTunes, Google Play, Stitcher, Soundcloud, and Spotify.

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today is going to be kind of a unique episode. I'm going to do a couple of things, but they are tied together. First and foremost, I'm going to read an item that I found online called, “Hello, my name is Ankylosing Spondylitis.” From there, I'm going to review an article that talks about four reasons that you should be treating your Ankylosing Spondylitis. So these tie together because one paints a very, very bleak picture of what we deal with and what you may deal with it sometime in the future. Again, this is not set in stone medical advice. It's strictly just readings and opinions. So make sure if you have any concerns or Questions about anything that we discussed today that you go ahead and talk to your doctor. And then lastly, I'll consult an article from healthline.com about four reasons you should treat your Ankylosing Spondylitis. So I hope you guys enjoy the two pieces put together and I think Kylie Frost from Kylie's race to beat Ankylosing Spondylitis Facebook page for the information. Last, but not least, a housekeeping item. I want you to know that Patreon page is up and available. If anybody should feel inclined to become patreons of this podcast, it's greatly appreciated. Secondly, if you go to the spondypodcast.com page, on the right hand side you can access The Ankylosing Spondylitis Podcast t-shirts, sweatshirts, there's men's women's versions of shirts in there. So I hope to see everybody ordering. I've gotten some feedback from folks that have ordered so far and they like what they see. Everything will be on order until I believe the end of February and then the items will be printed. And you'll be contacted about shipping dates and shipping costs for the items at that point. So anyway, take care and enjoy. The other night I was going through Instagram and I came across this post. And it was a discussion or writing about ankle closing spondylitis. I read it and I thought that is exactly my existence with Ankylosing Spondylitis. Now, I know many of you have different outcomes again, because this disease affects us all differently and I see many of you that are not all but many of you that are younger and haven't had quite fusing yet that you end up with a different experience to how you deal and the ways you can deal with Ankylosing Spondylitis.&nbsp;I wanted to read this and but I hope anybody that wants to discuss it will email me at [email protected]. It's on the web page. For spondypodcast.com and Jayson is spelled j a y so n dot s a c c o @ gmail.com. I did find this on a Facebook page that was called Kylie's Race to Beat Ankylosing Spondylitis. She is in New Zealand and is working to run marathons in spite of her Ankylosing Spondylitis. So I cheer on, I congratulate her and I hope that you all head over there and like her page.&nbsp;So let's go ahead and I want to read this and it's a little lengthy, but here we go. Hello, my name is Ankylosing Spondylitis. I am your monster in the dark. I only can be seen once I have destroyed you completely and it's all too late. I'll make you tired. I will make you weak. I will create a complete pain throughout you that you cannot withstand. I am the cruelest of cruel. Your hands will cramp and creak your back will be unfair. The pain will be so intense it will drop you to your knees. It will be so sharp at times like a knife being stabbed into you over and over again. I get great joy and destroying all that's good in your life and no one but you can see and feel the monster I am and what I am doing to you hidden from their eyes. Out of the master of all this and the master of you, your hips. I will take them in pain so severe you will cry begging God to help you and your life a belt you will tie around your leg just so you can lift it to move it in the mornings as I take your hips away permanently. Your neck, my goodness, your neck. Well this will become a test

In this episode, I interview Ricky White, author and current President of Walk AS One. Ricky (www.rickywhite.net) was diagnosed in 2010 with Ankylosing Spondylitis and it would lead him on a whole new journey. He was a nurse at the time and AS left him at times unable to easily perform the physical side of nursing. Through the years, Ricky transformed to a stay-at-home dad while his wife went to work when they moved to the United States. He was doing a blog (www.endlesstrax.com) that was popular in the AS community. He no longer posts to it, but the works are still there to read.   If being a stay at home father and getting  back into karate wasn’t enough,  Ricky started helping to found the 501c3 charity  Walk AS One (www.walkasone.org). The group wants to see everyone with AS keep moving to fight the affects of AS that can happen with a lack of exercise/movement. In May of each year for AS Awareness Month, there is the event Walk Your AS Off (www.walkyourasoff.com).   Ricky has written both fiction and a non-fiction book. The non-fiction is a great book to help you be your own advocate for dealing with your doctors. The book is called Taking Charge: Making Your Healthcare Appointments Work for You (http://mybook.to/taking-charge) that is available from Amazon. As both a nurse and patient, Ricky’s book can help you structure your appointments so that you can work to get your questions answered and become your best advocate for treatment.   The Ankylosing Spondylitis Podcast shirts are now available for order. Follow this link lakeshoregraphics.net/fundraisers   I am collecting orders till end of February (2019) and then shirts will be created and mailed.   Also, the Patreon page is up, follow this link: www.patreon.com/aspodcast

I wanted to let you know what this new episode up front I screwed up a little bit and I used the wrong microphone to record it. So when you hear this it's going to sound a little distant because I was using a microphone a little bit farther from me than my normal microphone. So I do apologize about the sound quality of this particular episode. Enjoy.&nbsp;Hello, Happy New Year and welcome to this episode of The Ankylosing Spondylitis Podcast. In this latest podcast, I want to do something a little bit different today and I was searching around on the internet and I came across from a website called healthline.com and article by Elaine Rushnell.&nbsp;No, not really an article but 29 things only someone with Ankylosing Spondylitis would understand. So I thought I would kind of review this and go through it and apply it to myself hoping that when you hear listen to it, you can take these 29 items and apply them to yourself if they've affected you, or somebody that you know, one.Number 1&nbsp;First of all; learn how to pronounce it is kind of important.&nbsp;I've had AS for 35 plus years, and I've said it wrong for most of that time, it is Ankylosing Spondylitis. I've said it many years for Ankylosing Spondylitis, which is wrong. It's Ankylosing Spondylitis. So I've had some feedback on that to the folks that have listened to it and heard me say it wrong. I apologize. I am trying better. It's an old habit that I'm trying to break. But it is, you know, one of the main things is first learning how to pronounce it so you can better educate anybody that's you're talking to.Number two, and I kind of liked this one. It made me laugh,&nbsp;“Is learn to spell it will make you feel very smart.&nbsp;‘That's the truth. Nobody could spell this correctly. I shouldn't say that, it's challenging when people that don't have it or have never heard of it see it written out. They all kind of just take a look at it, like it's a dinosaur. Something that you're writing like, you know, some major Latin sentence. What it is that and even if you go to try to put something on Instagram, you'll notice that there are two hash tags for Ankylosing Spondylitis, one of them with the L and the Y reversed. So both come up. You can use both. I do, but it is Ankylosing, and then Spondylitis, as I'm sure most of you are familiar with.Number three; you can make 1 and 2 a whole lot easier by calling it AS.&nbsp;Most of us do, It's a lot easier and people don't necessarily know what AS is. But that's where you can go in and explain what 1 and 2 a whole lot easier by calling it AS.&nbsp;Number four. If you have as you could try to blame your Uncle Joe or your Aunt Mary or anybody, if they have it, it's sometimes genetic.&nbsp;For me. I'm like, really the second-generation family member here in the United States. My family hasn't been here that long, since the early 1900s. So we don't know anybody going back or we don't know very much about it. But from talking to folks, that doesn't appear to be anybody in the past that has it. So was I just a lucky one? Who knows? I'd rather be lucky and get a Powerball ticket. But hey, I guess got this. So you just take it and do what you can do with it. So if you have family history, diagnosis, if you had an aunt or an uncle that always had a sore back, maybe they had it if they walked hunched over, or had a sore hip all the time or got confined to a wheelchair and the family, never do Maybe it was Ankylosing Spondylitis and you can better look back at what they dealt with lack of meds or any issues they might have encountered. So for your family, if you do have it, keep track of it going forward so that anybody at the future might know what's going on.Really also be interested has anybody done any of these genetic testing’s,...

In this episode I talk with Vinnie Tortorich, author of Fitness Confidential (https://www.amazon.com/shop/vinnietortorich). Vinnie started as a trainer and along with books, he has a high quality vitamin store and a coffee club all accessible from his website (https://vinnietortorich.com). In 2019, Vinnie will be releasing FAT a documentary. Keep an eye out for this, I think it will be of great interest to everyone. You can also access his podcast from his website or directly on iTunes.

Hey welcome everybody. I appreciate you taking the time to listen to this episode of The Ankylosing Spondylitis Podcast. It's kind of interesting, as a person that's had Ankylosing Spondylitis for over 34 plus years, I'm in no way an expert and I continuously learn. I'm an only an expert on the way as has affected me and the weird thing or the unfortunate thing about this disease is that we are all affected differently.&nbsp;One thing I do notice as I read the forums, whether it be on Facebook or the different areas, is I see people that are maybe in the earlier stages of AS and still quite flexible, still can move relatively well and I see a lot of talk about, I've cured it, I'm going to fight back against it to the best of my research capabilities. There is no such thing as curing Ankylosing Spondylitis, there's remission and I hope you all enjoy long fruitful remission. But I found nothing that says that there is any wave based upon medical research that as is actually cured. I'm not saying that to be a downer, I'm just saying, go into this realistically go into this with the idea that you're managing something that's going to affect you for your lifetime.&nbsp;Whether you be in your 20s 30s 50s or 60s, you're going to be dealing with this most likely the rest of your life and that if you take that attitude, my thought is if you carry on forward with that attitude, well as a chronic illness, there's going to be good days, there's going to be bad days, you're going to end up fighting this with the good fight, you're going to come out of this much better than somebody that is always trying to ignore.&nbsp;With this podcast, one of things I want to look at is can we help this with diet? I see people say, “Oh, you've got to be a vegan” or all you've got to eat this or “You must eat…” data you stay away from this.&nbsp;You know, I really don't know because I'm a terrible example I do not follow any type of specific diet. And I need to. I've had four hip replacement actually three hip replacement operations and one revision that failed and I carry too much weight I need to be able to lessen the weight that's being carried on my joints.&nbsp;My last surgery created a drop foot for me on my left foot, which means I now will be wearing a brace. Matter of fact today I went and got fitted for a brace to hopefully help to keep me from tripping so much on my left foot. So there are a lot of things that can affect that. The weight that I carry, and the limited use of my left leg.I can't exercise I can't go out and run I see people that are able to do that. The stretching is great. All of these items, whether it be running, stretching, anything to keep that weight off. Stay away from any type of diabetes, or, or any type of sedentary lifestyle as best you can is going to only benefit you. So as we go forward in this, I want to look at diet. I'll be having somebody on pretty soon talks about a diet based upon it's called NSNG, no sugars, no grains, and Vinnie Tortorich here to talk about it. And in that episode, you'll find links to his books and his website and videos and he's had his own podcast. He's got a lot of good evidence as to the no sugar, no grain theory, and how it can help and reduce inflammation, which is really the main issue that we all suffer from. And on top of that, it can help to keep some of you, hopefully the weight off.I've also planned on having a person on to deal and talk about, you know, relationships, not how you deal with your friends. I think we all do fairly well in that aspect. It's really the relationship you have with others that care for us. Whether it be a boyfriend, girlfriend, whoever.You're going to deal with situations where you're having a flare, and they don't understand is if they don't have any type of illness like this. They're going to have higher energy levels most...

This is the first episode of The Ankylosing Spondylitis Podcast. It is just a short overview of what is to come.Hello, and welcome to the inaugural episode of Voices of AS, as many will know this as stands for Ankylosing Spondylitis. This is a disease I've had for over 35 plus years,&nbsp;I'm 48, soon to be 49 and was diagnosed at 14. So it's something I've dealt with for a long time and doing this podcast has really been something in the back of my mind.&nbsp;I wasn't sure how I wanted to structure it, what I wanted to structure it about. So in this episode, I want to kind of lay down what I want to do with everybody or for everybody and you may hear a little bit of wandering, so I apologize as I kind of collect my thoughts. I'm doing this really just off the top of my head just talking to everybody. I want to be completely honest and brutally honest for some people that are new to the disease.&nbsp;There's a lot of information floating around out there and the one thing about Ankylosing Spondylitis is nobody reacts the same way to the disease. What bothers me might not bother you. I see people make comments and some of the Facebook threads that says, “do this and you'll feel great.” Well, you know, that's great that it worked for you, but it might not work for everybody else. So I always want to temper or temper this stuff to say that what I'm doing here is what works for me.&nbsp;Now I'm going to in the future interview other AS patients, you know, people that have Ankylosing Spondylitis and we're going to hear what they do and what works for them.Again, we're not doctors seek out you know, the best rheumatologist you can best medical doctor you can and you have them diagnose what works best for you. It could be biologics, it could be aspirin, it could be something as complete as a hip replacement. It's what is your journey with AS, our journeys are just to try and provide some connectivity. So You know, idea that there's others out there that are dealing with this. And as a community, we should step up, be there to support each other. When I was diagnosed at 14, there was no other person that I knew that had Ankylosing Spondylitis. There was no Internet. I couldn't just go on and Google it and, and figure out Oh, this is what I'm dealing with. This is what I could expect. I had no idea. The doctor put me on some meds and away I went to live my life, going down to yearly to check in with my rheumatologist and unfortunately, my version of AS was one that progressed very, very quickly through my teens and 20s, so miserable times for me. By the time I was 31, I'd been through four hip replacements. Many of you are coming into this in the 30s in the 40s. And you're starting the process where there's fusing going on that I already had happen. So We all sit in different spots. But that doesn't mean we can't support each other and be there.&nbsp;So, you know, many of us sit there and go, well what is AS, what is Ankylosing Spondylitis? So I pulled up the Spondylitis Association of America and I just want to kind of go through their definition of what Ankylosing Spondylitis is where the overview of it as many know Ankylosing Spondylitis, or AS, a form of arthritis that primarily affects the spine, all the other joints can become involved. It causes inflammation of the spinal joints that can lead to severe chronic pain and discomfort. In more advanced cases, it's inflammation can lead to AnkyJosis which is new bone formation in the spine, causing sections of the spine to fuse in a fixed immobile position. AS can also cause inflammation, pain and stiffness and other areas of the body, such as the shoulders, hips, ribs, heels, small joints, the hands and feet. Sometimes the eyes can become involved. This is known as iritis and rarely the last item is your heart can be affected.&nbsp;The hallmark feature of...