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 real thing. So I went to; I couldn’t even count the doctors and specialists and different diagnoses I was given in the meantime in that 22 years. I had a lot of disability; probably years of my life in bed in horrible pain, with no help whatsoever.

Mickey Trescott: What were you told when you went in? Did you get misdiagnosed? Was that part of the reason? Why do you think it took so long?

Jolaine: I think it’s a typical story. I had skeletal pain, so I was sent to a rheumatologist. I had digestive issues, so I also saw a gastroenterologist. I also had hormone issues, so I was also seeing an endocrinologist. It seems that every specialist I went to, I had their disease, or their issue. So you’re told you have IBS, and arthritis, and you’re too skinny, that’s why you don’t have your period. All these different diagnoses. But in my gut, I always knew these are connected. I’m one person, I’m one body. I need one doctor that will look at the whole picture; not just that it hurts here, or this isn’t working. You know?

Mickey Trescott: Mm-hmm. So what was the final doctor that made the connection. How did that come about?

Jolaine: It actually wasn’t a doctor that figured it out in the end. There were a few tests along the way that kind of led me towards the diagnosis; but the final sort of conclusion or thing that sort of propelled me to find out what it was was Facebook. The pain that I had shooting up my leg, the original one, that sort of kept coming back over the years; I thought it was something with my foot. At the time, I wore high heels to work, and I thought it was something wrong with my food and wearing high heels. So I was at a podiatrist, and he was asking me a bunch of questions to determine if I would heal well after a surgery. Because as it turns out, I’m missing a small little bone in my foot, and he thought if we did this surgery, it would get better.

So after a series of questions, he said to me, “I don’t think by your answers that you’d be a good candidate for surgery. I don’t think you’d heal really well and it’s not going to benefit you. But I’m curious to know what your rheumatoid markers are like, and if you happen to carry this particular gene; HLAB27.” Which meant nothing to me, whatsoever. So I’m like, sure whatever. Let’s do a blood test.

So it came back positive. I have this gene. And my rheumatoid markers were slightly elevated. And he said, “This isn’t a big deal. You might want to check this again in 5 or 10 years and see if its’ changed any.” And at the time, I was very sick. And I look back, and I think, it’s not my personality to go straight home and start Googling that, and figure out what is this gene, and what does that mean? But I think because I was just so overwhelmed with how I felt, I just kind of filed that in my head and never did anything with it.

So then one day on Facebook, a friend of mine just wrote the strangest Facebook status. It said, “I am HLAB27 negative.” Which, probably, to most people meant nothing. So as soon as I read that, I was like, “Hey, that’s that gene that I had.” So I private messaged her. I was like, “I’m curious; why did you write that?” And she said, “3 of my sisters have AS.” I wrote back, and said, “I don’t know what that is. What is AS?” She answered, “Ankylosing spondylitis.” So I Googled it, and I had the entire list of symptoms. And I just knew, when I read that. “That’s it! That’s got to be it.”

So all of the health care professionals I had in my life at that time; chiropractor, physiotherapist, rheumatologist, my GP, my naturopath; all of them said, “No, you don’t have that. You don’t fit the description.” But I still felt like, “Yeah I do.” I know that I’m still flexible, and I’m still mobile, and I can do all these things. But I feel what it says there. So I asked my GP for a referral to a specialist, and that took 9 months to get in.

Mickey Trescott: Whoa.

Jolaine: So I went to that specialist finally, after 9 months, and I said, “I have this gene. These are my symptoms. I think I have AS. What can we test me for this?” So he did some really, really simple tests. “Bend this way, bend forward, do this, do that. Tell me how you feel.” And he also said, “I really don’t think by looking at you and doing all of these hands-on exams that you have it. I really don’t.” And for the first time in 22 years, a doctor said, “But, I hear what you’re saying, I see this blood test. It’s just going to be a simple x-ray. Let’s do it.” And I felt like that was the first time someone actually heard what I said.

Mickey Trescott: Mm-hmm.

Jolaine: And that was really pivotal. So he took the x-ray, and it came back. And he goes, “Yeah. Sure enough, you have it, and it looks like you’ve had it for about 20 years.” And I said, “Yep. Yep, that’s about right.”

Mickey Trescott: Wow.

Jolaine: And that was it. Yeah.

Mickey Trescott: Wow. That is just incredible. You know, incredible just because it’s so common for us to really feel intuitively that there is something wrong, and to be told; especially as a young woman. I think we’re a little bit; we’ve experienced this personally. I experienced my illness in my 20s. But when you go into the doctor’s office, and you’re a normal weight, and you’re kind of a cute young girl; they kind of go, “Oh, maybe you’re depressed. Maybe it’s in your head.”

Jolaine: Yeah!

Mickey Trescott: I cannot even imagine. I was told that for a year, and I was going out of my mind. I can’t imagine 22 years.

Jolaine: Yeah, so many people were like, “Here, you need antidepressants.” So many things like that. And I was always, genetically, on the low end of the weight scale. So automatically that was a thing, too. It was, “Oh, you just need to gain weight. You’re deficient in nutrients. You’re not eating enough.” Things like that. But even he said; “You are not typical at all of any patient that I have.” And I think that’s probably because all of those 22 years, I still tried to do what I thought was the best thing with food, exercise, and sleep. So that probably really helped me. And I also knew that I had a really low bone density in my 20s. So I was trying to eat, and live, for that as well. So that probably all cumulatively really helped me. But I told him in that appointment, “Whatever your textbook says about AS and my future, you can throw it away when it comes to me. I’m not typical in anything, and I don’t intent to end up where your textbook says I will.”

Mickey Trescott: I love that. You are on fire. But you know, you figured it out. And how empowering is that to just; that sequence of events. Finding out from a podiatrist that you have a genetic marker, and then a friend posting on Facebook, and then basically researching online, figuring out, “I probably have this disease.” All the things that had to happen to make you get there. Of course you told him that he couldn’t count on you just being a textbook case. {laughs} That’s a pretty incredible story.

Jolaine: And you go through so many different doctors, and so much vulnerability, and so much; almost, I don’t know, maybe abuse is a strong word, but sometimes it feels like it the way that you’re treated. That you get to the point where you understand 100%; if I don’t speak for myself, nobody will.

Mickey Trescott: Yeah.

Jolaine: You have to be your own advocate. You have to say, “This is what I want, and this is what I know.”

Mickey Trescott: Yeah. And you have a unique experience as the person who is feeling those symptoms, and whose body is physically expressing itself in that way. You deeply come to that understanding that it’s all you. All these people, they can give you information; they can try to help, but I think a lot of the way that people view the medical profession and in turn the same way that they treat us; especially chronically ill patients. Yeah, abuse is not too strong of a word {laughs}. It’s almost; you have to heal from that. I don’t know what your experience was like, but I knew that it took me a little while to gain my respect back for the medical profession after.

I had a similar experience where I found out about Hashimoto’s, I read about it, I knew I had it, and I had to go through 6 doctors who told me, “No, no, no, no, no,” until I found the one, “Yes, actually, I did the test, you have it.” I was pretty pissed at the whole conventional medical system. And it probably took me a year or two to get back to the place where I was like; you know, there are good doctors out there. They get into this because they want to help, and I just have to figure out how to find the right one and how to communicate and how to advocate for myself properly.

Jolaine: And I don’t think that ends. I’m still experiencing that at times, where a doctor doesn’t believe you. That just happened to me over Thanksgiving last year, and I ended up writing a 4-page letter to the emergency doctor at my local hospital just for the way they treated me, for the misunderstanding. And not in a hope of getting out my own anger, but to give her perspective on, “The next time you come across somebody like me, this is what you need to know. After we leave the hospital, this is what happens that you don’t see.” That kind of thing.

I think to my disadvantage, as well. I’ve been told I don’t express pain outwardly very visibly, and that was to my disadvantage. Because I’d sit there and say, well I’m in a 9/10 pain right now. But I say it calmly, and I’m not crying, and I don’t display it well. So that was to my disadvantage. But then on the flip side of that, if you go into a doctor’s office displaying it, and you’re crying, and...