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 you’re emotional, then they say, “Well you need antidepressants.” So there’s really no win there.

Mickey Trescott: Yeah. Yeah. This is a problem that people with autoimmune disease and chronic illness know well. We appear quite normal, and a lot of times we’ve gone through so many years of learning to build up that resilience, and kind of keep it all in, and keep it together when really inside we could be really suffering. It’s really hard to communicate that.

Jolaine: Yeah.

2. Reaction of friends and family to the diagnosis [16:31]

Mickey Trescott: How did your friends and family react to your diagnosis and finding out about this? Were they like, “Oh wow! There really was something!” How did that go?

Jolaine: You know, there was no really big huge reaction. I think partly because it’s not a disease people have heard of. So if I were to say to them, “I have cancer.” Or, “I have diabetes.” Something they’ve heard of, then the response might have been a little bit different. But people, if they’ve never experienced illness. I even had people say, “Is there a medication that will cure it?” Well, no. Medication isn’t a cure, ever, for anything. So there are a few people that are close to me, like my sisters, and my parents, and my husband, and “I’m really sorry.” and they’d Google it, read about it, try to understand it. So that was really nice. There’s validation in that.

I naively thought that a lot of the people that really mistreated me might say, “Oh, I’m sorry. I never treated you right. I didn’t give you grace. I wasn’t kind.” Or whatever. And when that didn’t happen, that was disappointing. But that was also a learning experience to me too. Maybe if they’re not even now accepting that, or accepting their own role in what might have been really difficult for me, maybe I need to distance myself a little bit from that for my own health.

Mickey Trescott: Yeah. I think that’s actually, sadly, very common. And I hope if anyone is listening to this, and you know you’ve had that similar experience, you’re not alone. Because I think we kind of get mistreated by a lot of people in our life, and we have this validating experience. Sometimes it’s only validating to us {laughs}. Other people don’t go, “Oh, wow! That’s what’s going on? Ok, I am so sorry.” No.

Jolaine: Yeah. I did actually have one apology. I ended up writing a letter to people on Facebook, kind of saying this is what I’ve been through. And if you happen to know somebody in your life who has anything similar to this, treat them this way, say this not that, give them grace, believe their truth. That kind of thing. And, “If for some reason this letter that I’m writing to you is offensive, why? The chances are, the reason you find it offensive is because you’re guilty of that.” And after I wrote that, I did get one apology from an extended family member. And that meant the world to me. Honestly; all of the physical pain that I’ve been through I would say pales in comparison of the emotional pain of people who are close to you not accepting, or not being kind.

Mickey Trescott: Mm-hmm.

Jolaine: And it would simply take, “I’m sorry.” That’s really all I think that’s required. So that did mean a lot to me.

Mickey Trescott: Wow. Do you think there’s something about connecting with other people, especially who have had this experience? I have had a lot of women in my life that I’ve found have kind of experienced this. You’re able to have a friendship on a different level than I think people that haven’t experience pain.

Jolaine: Yeah. 100%. I think there’s something incredibly powerful about connecting with someone; whether that’s in person or online who actually, really, really gets it. When they really understand what it means when you say, “I’m tired.”

Mickey Trescott: Mm-hmm.

Jolaine: “I’m so tired.”

Mickey Trescott: It’s not because you stayed up to 2 in the morning drinking with your friends, and you had to go to work at 7. That’s not what we’re talking about. {laughs}

Jolaine: Yeah. Like the tired that feels like every word and every motion is, I’m underwater. And even trying to listen to you talk to me right now, it’s like we’re underwater, and I’m trying to process what you’re saying. When you meet people who really get that, it’s a moment. It’s a huge moment. And I have two sisters with autoimmune diseases. My oldest sister has Crohn’s, and she’s been through so much and really understands that. That’s been really helpful; hopefully for both of us, but certainly for me.

3. Low points on the journey [21:20]

Mickey Trescott: Can you describe, Jolaine, some of the physical experiences, what you experienced when you were diagnosed. What was your; basically what was your low point? How did that feel for you?

Jolaine: The low-point before I was diagnosed? Or how I felt actually?

Mickey Trescott: Yeah, just in your illness. Just, when it was at its worst, what were some of the symptoms that you had?

Jolaine: At its worst, I was completely disabled and immobile. All I could move was my arms, really. Even just lifting my head was extreme pain. And that would last; I think the longest was close to 6 months. Around 5-6 months. And, a person can only take so much. And I think because I didn’t know what was wrong. So you’re lying there, alone, with no medical help, or validation of any kind. In horrible pain with not assistance more than Tylenol for that. And no sleep. And hardly, really, being able to eat. Because that means you’ve got to get up to make something, right? So I definitely do remember being suicidal, specifically one particular night. I would say it was the strongest then. It’s only by the grace of god that I made it through that night. And if it wasn’t for; I just thought about how some other people I was close to would cope with that. That I didn’t.

Mickey Trescott: Yeah. Jolaine, thank you for sharing that. I think it’s a very vulnerable thing to admit. But I think that is something that a lot of us that have struggled with chronic pain in our deepest darkest moments definitely wrestle with that. I think some people listening; if you’re there, try to reach out to some people in your life and get some support. Because it’s not uncommon. That is how real some of that pain is. Especially when you’re having the same experience of going into a doctor’s office and having them tell you it’s all in your head. I mean, how deflating and demoralizing is that?

Jolaine: Yeah. Just a complete loss of hope. Like, an entire loss of hope. And I don’t think anyone can continue living if you have zero hope at all.

4. First action step towards health [24:08]

Mickey Trescott: I totally agree. So, to transition a little bit. What was the first action step that you started to take towards managing this condition? I know you kind of figured out over that long diagnosis period some things; you had kind of a healthier lifestyle. But once you got that diagnosis, were you offered any treatment? What was kind of the first thing that you did that started to get you on the road to recovery?

Jolaine: Well, around the time that I was diagnosed was really close to around the time that I discovered the autoimmune protocol. So when my rheumatologist confirmed with my diagnosis, kind of like any other doctor. If you don’t do what they say, you can’t be their patient. So I was kind of walking this thin line where I had discovered the autoimmune protocol. I know that the standard drugs are probably going to be harmful because those are prescription NSAIDs, which as I learned, contribute to leaky gut. But if I don’t follow what he says, then I don’t really have a doctor on my side to help me through this in any way, through my future as well. And I really, really valued him. So I wanted to respect his prescription for me, but I also wanted to do what I was learning was best for me.

So that first year, the reason I said it was the worst was because I agreed to the drugs. I said to him, “I’ll try it.” But I hadn’t actually said aloud yet, “I don’t think they’re good for me. I found this diet.” I hadn’t said that aloud to him. So for the first year, I tried 4 different NSAIDs. And within 48 hours; maybe 24 hours of each one, I couldn’t walk. And it would take me two to three months until I would recover from that. And then he would say, “Ok, let’s try this.” So we’d do it again. That process took a year, until I went through, I think it was 4 different drugs. And at the end of that he said, “Ok, we’re going to try biologics.” Which I wasn’t willing to try. By that time, I had learned the side effects and the risks of those.

So that’s when I said to him, “I discovered this autoimmune protocol. I don’t want to do the drugs anymore. We both saw they didn’t work. I would really love it if you would just follow me on this journey and see if it helps.” And he said, “Most doctors would just say you can’t be my patient anymore, then.” And I said, “I get that, but there’s nothing required from you except we’ll do a blood test once a year and see what’s happening.” So he compromised. He said, “Ok. You’ll come once a year, we’ll check your blood test, we’ll do an MRI. If there is any progression in fusion in your spine, then we’re going to do it my way.” And I said ok.

The very first thing I did when I discovered Sarah’s website is I got on my crutches, and I went to my local organic grocery store and I bought bones. And I had tears streaming down my face, I could hardly move, but I made bone broth. And I think for about two weeks, that’s all I could eat. And that was the very first thing I did.

Mickey Trescott: I love it. I mean, you know I don’t love the year that you spent in pain, but I think your account of how you gained the respect of a conventional doctor, and it was unfortunate that it took both of you so long to get to that conclusion. But I think the way that you approached it in that moment of, kind of in between the treatment that was tried and the treatment that was being proposed. You gave what he offered a fair shot, and it obviously didn’t work. I think that is a really great example of how to work with what you learned about online, and the current medical situation that you were in. Which is kind of in that in-between. Like, ok I can go with the biologics, but let’s try this first. But also, you got your doctor on board. I’m sure it was not easy, but good for you, Jolaine, advocating for yourself and making that choice there.

Jolaine: Yeah.

5. Results on AIP [28:42]

Mickey Trescott: What happened? {laughs} I’m curious. I don’t know this part of your story. How did that go for you? Tell me a little bit about the beginning of AIP and some of the first things that made you realize that that was the right track?

Jolaine: Well, I think because I had had health trouble for so long, and had seen other naturopaths and doctors along the way who had given me advice on what to eat and what not to eat, I had already eliminated. Partly from what they said, and partly from what I felt in my body when I ate different foods. So I had eliminated already gluten, and dairy, and just kind of random things here and there. So the transition to AIP from where I was wasn’t huge. There wasn’t a lot more that I had to change. It was more of a focus of what I needed to add rather than subtract.

Mickey Trescott: Mm-hmm. Like that broth?

Jolaine: Right. Like bone broth. The organ meat thing, which is still a struggle, but I’m getting there. And learning more about the importance of sleep, and stress, and how that impacts me. So those sorts of things were huge in making changes. And then natural anti-inflammatories; learning about turmeric, for instance. That was something that I really noticed made a difference.

Mickey Trescott: How long did you do the elimination diet formally? I know back in that time there wasn’t a lot of information. Like now, we have a specific protocol, you do it for a certain amount of time. You do reintroductions a certain way. But a lot of people don’t realize that back then the autoimmune protocol there were just these threads of ideas of what people could do. What kind of thing did you do? How long did you follow it? Did you reintroduce foods? That kind of thing.

Jolaine: Well when I first started it, I didn’t even understand that it was meant to be sort of semi-temporary, and then you reintroduce. So I just had my list of yes and no foods, and that’s what I followed. It was quite a while before I realized, “Oh, people are reintroducing.” So I think now, I’d say it’s still very fluid. I know that I don’t do well with grain, and people with AS in general don’t do well with starch, so that’s kind of a consistent. I don’t intend to try and reintroduce those. I can tolerate a little bit of white rice, things like that.

But I say it’s fluid, because if I end up in a flare, and I’ve reintroduced eggs for instance, and black pepper. If I’m in a flare, then I pull back on those and then they’re gone for a while again. And then when I start to feel better, then I can reintroduce them. So it’s always back and forth between how I’m feeling and what I know might be so good at that moment in flare.

Mickey Trescott: How long did it take before you were like, “This is really working. This is what I need to do.”

Jolaine: Once I started that bone broth, that was monumental.

Mickey Trescott: It was that fast.

Jolaine: Oh, yes. I had been in bed for 4 months. So in that 4 months, I was on my iPhone Googling ankylosing spondylitis plus whatever. Plus food, plus diet, plus whatever. And that’s how I discovered it, was on my iPhone. So when I started the bone broth, I would say within the first week I was moving again. I was up and walking.

Mickey Trescott: Wow. That’s incredible.

Jolaine: It was pretty quick.

Mickey Trescott: Wow. And then further changes. Did you go back to your doctor and have some blood work? What were the results there?

Jolaine: Well, after we had made the compromise, I did have the MRI and blood work. My MRI showed that I have no fusion in my spine. Which is what the end results of this disease is, your spine fuses together, amongst other things that can happen. So I have no fusion. Considering the amount of years that I’ve had it, and I was undiagnosed and untreated specifically for it, he said that was quite a miracle. And then the blood tests; my most recent ones show that they couldn’t even measure any antibodies in my blood. So that’s pretty significant.

Mickey Trescott: {laughs} I’d say.

Jolaine: Yeah {laughs}. But again, that can change from week to week. I just went through a traumatic life event. We had a death in our family, as you know, and I’m in a little bit of a flare right now. Considering what I went through, I’m pretty impressed that I’m still walking. I’d say it was a huge win to make it through this. So again, that’s always something that’s changing. But those were the two tests that kind of really confirmed I’m on the right track.

Mickey Trescott: Yeah.

Jolaine: I had no fusion, my inflammation markers were really low and manageable; to me that’s evidence enough.

Mickey Trescott: Yeah. The antibodies are always a really good sign, because a lot of us, especially those of us who have had an autoimmune process. I suspect that I’ve had Hashimoto’s for almost 20 years now, based on kind of my early symptoms when I was a teenager. And if you think your body has been making antibodies for that long, there’s going to be some damage that you’re going to have to deal with for the rest of your life. And just getting those antibodies down, either very low, or zero if that’s in the cards for you, that means maybe you can maintain your current state of health for the rest of your life. Which, that is a win for people with autoimmune disease. Usually we get sicker and sicker as we get older, and then things get more complicated. So just being able to kind of restore that, knowing that your immune system is functioning well, that’s really good.

Jolaine: Yeah.

6. Lifestyle changes [34:43]

Mickey Trescott: Talk to me about some of your lifestyle changes. Because you talk a little bit about kind of dialing in that stuff. It sounds like with the pain you were really not sleeping initially. Tell me about the things you’ve found most helpful in your healing journey in that area.

Jolaine: I think that lifestyle changes; the amount of research and information coming out in the last couple of years about sleep and stress has been huge. I mean, I always knew those were big, but I don’t think I understood how big. And also the connection between the microbiome, as well, and understanding the gut-brain axis, healing your gut, all of that kind of thing. So I think I’ve placed a lot more emphasis on keeping my stress levels manageable if I can, and putting sleep as a priority, and keeping movement as a priority, as well. And nature, too. Being outside, I find really helpful.

Mickey Trescott: You’re telling us our book. {laughs}

Jolaine: {laughing}

Mickey Trescott: You’ve figured out all the same stuff we’ve figured out, Jolaine. How is this possible? It’s possible because it works, and we know that. But talk to me about the things that you do to help you sleep properly. What did that look like for you? Are there any supplements, or routines, or anything that help you find good sleep?

Jolaine: That’s still an ongoing learning thing. I’m type A, like most people are with autoimmune, so I measure the success of a day by productivity. So my brain is always going 100 miles an hour. So when I go to bed, I have a really, really hard time shutting that down. So some of the things that I’ve had to do is; I stopped answering my phone, and stopped answering any sort of messages of any kind as much as I possibly can a few hours before I go to bed. I have a time I look at the clock and I’m like, “Ok, I’ve got to shut it down. Stop working, stop folding your laundry. Just stop, and physically try to slow down.”

Some of the supplements that really helped me; I find magnesium is really great before I go to bed. Taking collagen before I go to bed. More of it is just physically trying to slow it all down, because I’m a fast-paced moving person. But I’m still struggling with that. I really just got the Oura ring that Sarah was talking about.

Mickey Trescott: I read about that. Do you like it?

Jolaine: I do like it. I’m kind of a nerd; I like the data that it’s giving me on my sleep. I wake up and I see one day I’ve had an hour and half of deep sleep, and the next day it’s like a minute, and I’m like, “What? What happened?”

Mickey Trescott: Mm-hmm.

Jolaine: So I find that really interesting. But that’s still an ongoing thing. I struggle a lot with getting good quality sleep. I’m a sleep walker, I sleep talk, so that’s something I’m trying to figure out. What’s triggering that, why does it come and go. It’s really interesting to see the data in my heart rate, going through this death in the family and how my sleep quality changed then. I was able to see that with the ring, and show my husband. Like, “Look, I’m telling you! It actually makes a difference.” Sleep really affects me. You kind of want the people in your life to be like, “I hear you. I get it.”

Mickey Trescott: Yeah, because their experience of you don’t really change much unless you speak up and you have something to show them. I think I’ve had a similar experience with my husband where sometimes it’s really hard for me to share with him if something is getting better or worse; how those symptoms or those feelings. You can feel your heart racing, but you might not be like, “Ok it’s racing now! Ok, 15 minutes later it’s racing really fast now!” That’s not what we do. So that’s really interesting that data can help show that.

Jolaine: I can show him, like the few days before this event my resting heart rate at night was at 53. Then the day we got the bad news, my heart rate was 73, and that remained consistent for about a week. To be able to see that is pretty cool.

Mickey Trescott: Yeah. Cool. Well, you know, sleep and stress management I know we talked about it a lot on the podcast; that’s my trouble area too. I suspect that for a lot of people, once they get the dietary changes dialed in, they’ll find that that’s actually not hard. In the long-term, once you have this experience of profound healing with food and you really understand how those triggers affect you, it becomes less emotional more like your routine. You know? This is how I eat. But this is how I sleep isn’t that easy, because technology. I have the same problem, getting off my phone at the end of the day. You have to just be done and do something else. Because if we rush into bedtime, it can be kind of rough. So thanks for sharing a few of your tips there.

Jolaine: Yeah.

7. Standout supporters [40:04]

Mickey Trescott: We have really burned through our time.

Jolaine: I’m sorry!

Mickey Trescott: No! This has been a really fantastic interview. I think people are really going to enjoy it. I’m going to ask you one more question about support. Have you had any standout supports who have contributed to your healing journey, and can you talk a little bit about connecting with other people and how that’s helped you?

Jolaine: I would say. This is going to make me cry now.

Mickey Trescott: Oh no! {laughs}

Jolaine: {laughs} Sorry. The first person that comes to my mind would be my physiotherapist. She was there before I was diagnosed, and still is. And probably even more than my own husband, has seen me at my most vulnerable, the most pain that I’ve expressed. She’s also really wise, and she shows empathy but not pity. She listens and lets you finish your sentence. She hears that, but also she has a great way of giving me perspective.

So for example. Say I haven’t been able to walk for 4 months, and she’s seen me go through that, and helped me get to my car after a treatment and all that stuff. But then when I come out the other side, she’ll say, “I want you to take a second and see how great you’re doing right now, and remember where you were before. And next time this comes around, remember you will get through it. You will get back to this place. It always comes full circle.” That’s really helped me. And absolutely I’d say she’s been a huge support for me in that. And also become a great friend.

And then of course my family, my sisters, my husband, my mom have all been really supportive in a way that; for instance, I’m invited to a birthday party, if I say “I can’t sacrifice sleep right now. I really want to be there, more than anything in me, but I can’t right now.” To have someone say, “That’s totally ok. You shouldn’t sacrifice your health. I know you’re going to suffer for a week if you come here for an hour.”

Mickey Trescott: Mm-hmm.

Jolaine: And that means so much to me. Whereas in the past, people are just selfish. They want you to be there for them. They don’t really care what it takes for you to get there, and how much you pay for it later. And there are sometimes I don’t mind paying for it because the experience itself was a memory that I treasure. And I’m going to remember that more than I remember the suffering. But when you sacrifice to be somewhere, and instead of someone saying, “Thank you so much for coming. I know it took so much for you to be here. I know you’re going to pay for it.” On the other hand they’ll say, “Why are you leaving already?” So that kind of contrast in support. So having people in my life who gets that; I will tend to spend my time with them more than people who are, “Why are you leaving already?” {laughs}

Mickey Trescott: Yeah. They just don’t get it.

Jolaine: They don’t get it, no.

8. Takeaway points [43:42]

Mickey Trescott: Well thank you for sharing that, so much, Jolaine. One last thing. Do you have any tips or takeaways for anyone who is kind of at the beginning of starting their autoimmune healing journey?

Jolaine: Yeah. Absolutely. You know when I first started this, and found Sarah’s website, she has a little slogan on there that says, “It’s only effort until it’s routine.” And that has always stuck with me, so strongly. Because it’s so true. Because when people start, they’re like, “I can’t give this up! I can’t give up dairy! I can’t give up bread!” it’s overwhelming. It’s so huge to try and absorb it all and do it all. If you can just come back to that. It’s effort now, but only until it becomes your routine. And it will become your routine. And it won’t require so much effort and thought and planning. That’s huge.

I think another thing I would really strongly suggest is to get online, on our online support community.

Mickey Trescott: Yes! Yes!

Jolaine: That’s so, so huge. And the difference between now and 6 years ago is night and day.

Mickey Trescott: Isn’t it incredible!

Jolaine: It’s incredible. If you’re going to end up with an autoimmune disease, this is the time.

Mickey Trescott: Yeah {laughing}.

Jolaine: Because 6 years ago, 10 years ago; even 20 years ago, none of this was here. I can’t imagine where I’d be if I didn’t have the online resources. So people like yourself, all of the online bloggers. There is so much information there that’s ready, and available, and free to learn. Go, and read, and do. And absorb that. And be grateful. I’m so grateful for you, and all the other bloggers who have strongly contributed to my quality of life. So, go read the blogs, buy their books. Take advantage of the amazing recipes. Don’t limit yourself and say, “I can’t eat anything delicious again.” There were no cookbooks when I started; now there’s a whole library of amazing things. Focus on what you can have, do those, enjoy them, support the bloggers.

Mickey Trescott: I love it.

Jolaine: Read the meal guides, take the grocery lists. It can be a great adventure if you have the right attitude.

Mickey Trescott: I love that. That should be the tagline. “It can be a great adventure if you have the right attitude.” So. So well said. Well thank you so much, Jolaine, this is awesome.

Jolaine: Thank you, Mickey.

Mickey Trescott: Awesome interview. I think people are really going to enjoy hearing your story. It’s really; there are no words for suffering for 22 years like you did. One little beautiful thing that’s come out of that is that you can get on here and share with our audience. I know that’s a difficult thing to share some of these personal details, but I hope anyone listening is really grateful to you for sharing your story today. It’s really, really great conversation. Thank you, so much.

Jolaine: Thank you, Mickey. Thank you for your podcast, and what you do. Podcasts were my very first; Robb Wolf, Chris Kresser; my very first introduction into any of this. So, don’t ever underestimate how much you’re helping people.

Mickey Trescott: You too. Back at you. That’s why we’re here.

Jolaine: {laughs} Thank you.

Mickey Trescott: So everyone, we’ll be back next time with a question and answer episode. You guys take care. Jolaine, wishing you continued wellness as you navigate this path. We’ll talk to you guys soon.

Jolaine: Thank you Mickey!

Mickey Trescott: Bye-bye everyone.

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About Angie Alt

Angie Alt is part of the blogging duo behind Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with Celiac and other autoimmune diseases; one creative, nutritious meal at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She’s also a world traveler who has been medically evacuated from two foreign countries. Strategizing worst-case scenarios is now something of a hobby. She is a Certified Health Coach through the Institute for Integrative Nutrition and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol. You can also find her on Instagram.

16 comments

  • Deb says

    I have just spent the last 48 odd minutes nodding my head furiously and commenting loudly (to myself!) I know that, I feel that, I get that!!
    I have been battling the same disease (plus a few more under the same genetic glitch banner) for decades since it presented itself when I was 15. All Jolaine’s pain and suffering and emotional roller coaster ride is so familiar.
    Thank you Jolaine for sharing your heartbreaking story; and to Mickey and Angie for so brilliantly capturing and sharing all the thoughts and feelings that overwhelm so many of us on a daily basis. Just knowing someone out there understands these diseases helps us all enormously. Thank you.

    • Mickey Trescott says

      Deb,
      I am so sorry to hear of your struggle, but grateful that Jolaine’s story resonated with you. We are NOT alone, these stories are not all that uncommon! Wishing you the best as you navigate your wellness journey!

    • Jolaine says

      Deb, I’m thankful that my story resonated with you as well. We live in a big world and it can be isolating, but to find anyone, even a stranger online, who understands and feels the same, brings some level of comfort. I’m sorry you have struggled too. Remember, you are a warrior! Never stop seeking and learning. Hugs.

  • Jeanne says

    I LOVED this podcast episode! I too have AS and went un and misdiagnosed for 20 plus years, so I could completely empathize with Jolaine. It was as if she were telling my story. Sarah B and you, Mickey (and Eileen Laird), were my points of entry into the AIP and I’m so grateful for your work in this area. I’m not sure what I’d have done if I hadn’t found you all!
    Because AS isn’t as commonly known as the other autoimmune arthritis conditions, it’s often not on the radar. Add to that, the limited information/view that some rheumatologists have regarding AS – such as… it’s a mans disease, it only affects the spine, you have to have fusion to have AS, etc. – patients tend to suffer for longer. It was a PA at my orthopedics office (I was there for a torn meniscus) that suggested I get tested for the HLA-B27 gene after hearing my history of pain and arthritis. It came back positive and after researching the condition, everything made sense!
    Thanks for the fantastic podcast! I always learn so much!
    Blessings,
    Jeanne

    • Mickey Trescott says

      Thanks for sharing your story Jeanne, and wishing you the best in your recovery!

  • I always find your healing stores very inspirations. When they pop up in my e-amil, I go right to them. I so relate to this healing story due to the length of time it took for Jolaine to find the cause of her disease and to find healing.
    I also understand her comment to the non-reactions of friend and family member to an autoimmune disease because no one, except a person who has it, has a true idea what that means. Sometimes I almost wish I had cancer because (well not really but you get my point) because at least people who know what that is, bring you food, call to check on you and generally do what people do who know how to give emotional support. My experience with an autoimmune condition is that most people do nothing. Not because they do not care but because they do not understand the first thing about how it has changes our lives. I mean really we look normal so certainly so just go take a nap and then we should just be able to pick ourselves up by our bootsraps and get our work done…after all we look just fine. This is the worst thing about autoimmune…even worse than the pain or fatigue it that it is invisible. I’m generally a half glass full kind of person so I can move forward day by day without a lot of support but sometimes it would just be extra “nice” to be recognized, understood and supported sometimes too. (BTW: I did not know about the sleep ring….new info. for me…intriguing….My husband sleeps like the dead every single night and just assumed that everyone else sleeps that same way. He had NO idea I was not sleeping WELL nor what that even meant regarding healing. He just assumed that I get up at 2 a.m. and start working….this was “normal” for me to him.) And this is a man who has lived with me for 22 years. Thank you to everyone involved in these great interviews!!

    • Mickey Trescott says

      Donna, thank you for your feedback! I agree with you that not looking “sick” is a huge factor in resistance from friends and family. And you are not wrong about the cancer sentiment. This is something I’ve said before. Our culture lacks such an awareness about autoimmune disease, despite the fact that it is far more common than cancer, hear disease, and diabetes. I’m hoping that the work that we are doing is helping to raise this awareness, as well as teach people to better advocate for themselves and share how they feel and what they need, so that they can engage their communities and families to help them heal. Wishing you the best on your healing journey Donna!

    • Jolaine says

      Hi Donna- I totally get what you are saying about cancer and agree. People are much more receptive and empathetic with the “C” word or anything familiar. And also, when they commit to helping you there is an end to that, either good or not so good, but they know this is not a lifelong situation where they are going out of their way to help. With AI a commitment to helping never ends. Very few people can and will give that. Also, the majority of people are not 100% selfless, even when they help someone with cancer without failing, they in return get a bit of a hero badge for stepping in and tirelessly helping their loved one. Those who are supporting us behind the scenes get little if any recognition, and for many that’s just not enough. They want that pat on the back public recognition. And I also agree with the “well you look fine” statement we often hear! You can’t win with that one either! If you look horrible, which is how you may feel, people will perceive you as pathetic and whining. However, put on a nice dress, some lip gloss and a smile but tell someone you feel terrible pain, exhaustion and need to leave the party, “well you look fine to me”. There’s not doubt about it, this journey is filled with challenges of all kinds. I’m grateful for the online community to talk to others who REALLY get it.

  • Annita Thomas Beauchamp says

    This interview really hit home for me. I found myself commenting to things Jolaine said because I understood her long, painful journey. When she spoke about coming to the point of being suicidal, I cried… My journey has also been long. Most of my life but, debilitating for ten years, the last three I’ve been bedridden 75% of the time. One of the hardest things is the isolation. Where did all of my loved ones go? My story is long. I’m trying to fight… I have a precious son and I have missed so much with him. He helps me. I hate that he has to help me at times. It’s too much for a child and all he will remember. My mom is almost 79 and does what she can to help take care of my son. I know what I need to do. I agree with everything this site says. I am too weak to shop and cook.

    • Mickey Trescott says

      Annita,
      Thanks for listening, and I sincerely hope that you are able to start feeling well again. It is disheartening when friends and relatives drop off when we become ill and need help. My advice would be to never stop asking for help when you need it, and don’t feel guilty for asking. When I was my sickest and I had friends asking how they could help, I wish I would have asked them to run to the store for me or get some broth started on the stove. You don’t have to achieve everything at once, but like Jolaine and her broth… even a single habit can be the thing that tips the scale to recovery, and once you start moving in the right direction it can get easier. Sending you healing vibes!

    • Jolaine says

      Anita my heart hurts for you. I understand how you are feeling very much and can sense through the words on the screen that your emotional battle is equally as difficult as the physical one. I even cry when I listen to the part about that night I wanted to end my life. It’s a dark place to be. The next morning, I made a decision however, and that is I can never ever give up hope again. I tried that and it ends in a very dark, isolated, and yes suicidal place. Even the smallest thread of hope can keep one going. I understand that learning what to do is overwhelming, and that going out and doing it is so difficult. Maybe there are resources you aren’t aware of? My local grocery stores will deliver for a very small fee, which is completely worth it when one trip to the grocery store could potentially set you back for days. Often you can order groceries online and have them delivered. My pharmacy also does deliver. Maybe you could find someone to hire once a week to do food prep for you as well. Chopping vegetables and making a pot of soup for the week, or a pot of bone broth. If you live in the US there is an AIP food delivery you could order and have on hand in the freezer for emergencies. Do some brain storming. Look for solutions, one by one, to your obstacles. Focusing on those obstacles will only defeat you. You are stronger than you know. There is no one with AI that I’ve met that isn’t made of something strong inside. You can do this. There is hope. Hugs.

  • Nan says

    OMG, I so relate to Jolaine’s story. I could have written it, including the suicidal part. I have AS, Lyme and mold toxicity. I knew something was wrong, I just knew it in my body but I couldn’t get anyone to listen to me. Dozens of health care professionals later, I made my own diagnosis. Eighteen months to get the proper diagnosis and another eighteen months on the proper protocol and I feel great. Keep it up, life can get better.

    • Mickey Trescott says

      Nan,
      So happy to hear of your recovery, and encouragement for everyone else here. Blessings!

    • Jolaine says

      Wow Nan that a long list of challenges you are facing. I’m so happy you have found such successful progress!! Stories of success are powerful. Keep up that fight!

  • Kelsey says

    This episode was made for me to happen upon. I was so excited that I wanted to jump out of my car and get online and find a way to contact Jolaine!! I swear everything she explained in the podcast I can completely relate to. I am 23 years old and have had medical problems for as long as I can remember. In high school I was having problems with anxiety attacks – I had a bunch of testing done on my thyroid but they found nothing so I was put on anxiety medication. Also, my whole life I have been thin and active. I have never gotten my period on my own and was told it was because I was anorexic and just needed to eat more junk food. That was obviously not the solution I was looking for – i loved eating!! On top of that, the last time I saw an endocrinologist she said I had osteopenia and cysts in my ovaries so she put me on birth control to bring back my bone density. Still no period now that I am on the birth control. Also, in college I had extreme gastrointestinal issues. My colon was so backed up that they could see it on my x-ray. After some testing, they said they couldn’t find anything wrong and said it was IBS. They told me to take laxatives daily. Then came the joint pain – I saw a rheumatologist and again nothing was “wrong” so they prescribed me an NSAID.
    Fast forward to March of this year. I woke up paralyzed in my hotel room (I’ve traveled for work since graduating in May of 2016 from college). I was so scared because I was alone and could not get out of bed. That was the day my life changed forever. Ever since that day I have not remembered what it’s like to not be in pain. My back feels locked in place. I go through flare ups where my back is so tight that it radiates throughout my whole body. It’s so exhausting it makes walking hard. It makes me nauseous. It wakes me up every night so I am constantly fatigued. I stress about it so it induces even more insomnia. I can’t even do what I love anymore – running.
    Jolaine, I am reaching out to you because I do not have a diagnosis. I am currently stuck in the conventional medical world trying to get answers. A story like your’s has been something that I have been waiting to hear all my life. I hope we can connect on our similarities to create the sense of community I crave and lead me on the path to recovery. Thank you <3

    • Mickey Trescott says

      Kelsey,
      I am truly sorry to hear your story and hope you can find some answers soon. Have you reached out to some specialists (like a rheumatologist) to get testing and move closer to a diagnosis? Are you working on your own with DIY diet and lifestyle changes in the meantime to help yourself build resilience? Sending you blessings and swift answers, Kelsey – hang in there!

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