S2 E6 Mickey interviews Jolaine Weins, who is recovering from ankylosing spondylitis

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Welcome to The Autoimmune Wellness Podcast Season 2! We’ve created this podcast as a free resource to accompany our book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Season 2 Episode 6‘s interview features one of the most captivating stories of AI recovery we’ve ever heard. Jolaine Weins is recovering from a rare, arthritis-related autoimmune condition called ankylosing spondylitis. Following her initial symptom discovery, Jolaine waited 22 years to receive a diagnosis, all the while visiting countless practitioners and living in debilitating pain and lethargy.

Shockingly, it wasn’t a practitioner but a social media post that finally pointed Jolaine in the right direction. Her story is one of the most powerful testaments to the importance of self-advocacy we’ve ever heard. You’ll want to listen to every fascinating detail! Scroll down for the full episode transcript.

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Full Transcript:

Mickey Trescott: Welcome to the Autoimmune Wellness podcast, a complimentary resource for those on the road to recovery. I’m Mickey Trescott, a nutritional therapy practitioner living well with autoimmune disease in Oregon. I’ve got both Hashimoto’s and Celiac disease.

Angie Alt: And I’m Angie Alt, a certified health coach and nutritional therapy consultant, also living well with autoimmune disease in Maryland. I have endometriosis, lichen sclerosis, and Celiac disease. After recovering our health by combining the best of conventional medicine with effective and natural dietary and lifestyle interventions, Mickey and I started blogging at www.Autimmune-Paleo.com, where our collective mission is seeking wellness and building community.

Mickey Trescott: This podcast is sponsored by The Autoimmune Wellness Handbook; our co-authored guide to living well with chronic illness. We saw the need for a comprehensive resource that goes beyond nutrition to connect savvy patients, just like you, to the resources they need to achieve vibrant health. Through the use of self assessments, checklists, handy guides and templates, you get to experience the joy of discovery; finding out which areas to prioritize on your healing journey. Pick up a copy wherever books are sold.

Angie Alt: A quick disclaimer: The content in this podcast is intended as general information only, and is not to be substituted for medical advice, diagnosis, or treatment. Onto the podcast!

Topics:
1. Jolaine’s diagnostic journey [2:33]
2. Reaction of friends and family to the diagnosis [16:31]
3. Low points on the journey [21:20]
4. First action step towards health [24:08]
5. Results on AIP [28:42]
6. Lifestyle changes [34:43]
7. Standout supporters [40:04]
8. Takeaway points [43:42]

Mickey Trescott: Hey everyone! Welcome back to the Autoimmune Wellness podcast season two. This is Mickey with you guys today, and I’m interviewing a very special friend of mine. We go way back in the autoimmune wellness journey. I first became aware of her almost, gosh, 6 years ago, through Sarah Ballantyne’s blog and Facebook. She was a very early member of the AIP community. Her name is Jolaine, and she has ankylosing spondylitis.

So, we’ve heard from you guys that you find it really helpful to hear from these people who have taken on this healing journey in real life. I couldn’t think of a better example than someone like Jolaine. She’s been so kind to agree to interview with me to share with you guys a little bit about her story. So thank you so much, Jolaine, for joining us from your home country of Canada. Are you ready to get started?

Jolaine: Thank you Mickey. I am.

1. Jolaine’s diagnostic journey [2:33]

Mickey Trescott: Awesome. So, first thing’s first. We know that you have ankylosing spondylitis. But really; what was the first symptom, first thing that you noticed that something was wrong?

Jolaine: I think I first noticed; I was about 21 years old, and I was just at work and I had all of a sudden a really sharp shooting pain at my leg into my pelvis area, and my sacrum joint, which is where the disease kind of starts. And that sort of just continued off and on. I just thought it was something wrong with my back. I used to walk to work, and I remember one day, I couldn’t walk the last block. I had to take the bus for one block. And that was, “Ok, something’s really wrong.”

Mickey Trescott: Whoa. Yeah, that’s pretty debilitating when you can’t walk a block. In that moment, how did you feel having to wait for the bus? Were you like, “I need to call my doctor.” Or what was going through your mind?

Jolaine: You know, I honestly just thought maybe I’m out of shape. {laughs} I don’t know. I really didn’t think that it was something that serious.

Mickey Trescott: Mm-hmm.

Jolaine: You know, I thought maybe I needed a trip to the chiropractor, or maybe I should exercise some more. Probably the normal thoughts that would go through anyone’s head. It never occurred to me it was a disease of any kind.

Mickey Trescott: Yeah, especially when you’re young and you really haven’t had anything happen to you like that. I think our tendency is definitely to just be like; “Well, if I can just get through this, it will go away.” Or something.

Jolaine: Yeah.

Mickey Trescott: So from that first noticing those sharp pains, how long did it take until you actually got your diagnosis in? What was that process like?

Jolaine: It took 22 years.

Mickey Trescott: Oh my gosh!

Jolaine: And that was; yeah.

Mickey Trescott: That’s a long time. That’s probably one of the longer time frames I’ve ever heard.

Jolaine: Yeah. So, that was a good chunk of my life, and it was horrible. It was a horrible 22 years. And oddly enough, the first year after my diagnosis was even worse. So, it was really difficult. I mean, like a lot of people with autoimmune, your doctors, your family, your circle of friends, your coworkers, they just think you’re a hypochondriac. Because, I mean the list of symptoms is so long. And even to hear myself say to somebody, “Well this hurts, and this happens, and this happens.” To myself, I sounded like a little excessive, you know?

Mickey Trescott: Mm-hmm.

Jolaine: It didn’t seem like it was a...