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“AIP Stories of Recovery” is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please email us through the contact form.
Meet Jolaine! Jolaine’s struggle with Ankylosing Spondylitis and Hypothyroidism involved years of being confined to her bed in pain. It took her 21 years to find out what was causing the unimaginable pain! Jolaine didn’t give up though and her recovery using AIP is very inspiring.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
I have two autoimmune diseases, as far as I know; Ankylosing Spondylitis and Hypothyroidism. I can trace my first symptoms of AS back to when I was 21, and I’m now 46. I was not diagnosed with AS until I was 42, so that’s 21 years! I can’t say exactly when I was diagnosed as hypothyroid, but I’d guess at around 28-30 years old. I’m also not sure when I first started showing symptoms as there was just so much wrong at the same time. I don’t know which was due to AS or hypothyroidism. If I had to guess I’d say I probably was showing symptoms of hypothyroidism by the age of 25.
Describe what your lowest point with your health journey was like?
Well the most accurate one word answer I could use to describe the lowest point is hell. I was merely alive, but not living at all. I did not have a death wish, but I had no desire to continue living as I was living. I felt I had no purpose to be alive since my life consisted of lying in bed for months at a time in the kind of pain that has no words. Aside from the basics of being alive, my only other activity was going to doctor appointments. During those times I could be nearly 100% disabled as even lifting my head shot pain through me that took my breath away, quite literally. At it’s worst I could not sit up, get dressed, have a shower, eat, brush my teeth, stand, or do pretty much anything at all on my own. I’d go for days without doing any of those things, without talking to anyone. I had no diagnosis and doctors could find no reason for the pain I described, so I was sent home to just manage. The only pain relief I had available was acetaminophen, and over the course of six months I had unknowingly poisoned myself and spent a week in the hospital being treated for an overdose. I don’t remember most of four of those days, even still. Oddly enough, the year of my diagnosis was the worst. I got to a point where I felt I would truly never walk again. That’s when I discovered the autoimmune protocol. Lying in bed for another four months, reading for hours a day on my phone, and listening to podcasts.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
My personality is one of continuous seeking and learning in general, and when it comes to my health I’m even more determined to learn more and to find solutions. I’m very proactive in all things, except getting my taxes done. Instinctively I knew there were solutions out there to find and I have never stopped searching. If I had to nail down a moment, I’d say it was during one of those worst times of immobility and tremendous pain for months on end. I had lost hope in the middle of the night. The nights are long and horrible. Hope is a necessity for anyone to keep moving forward in whatever his or her challenges are. I remember repeating to myself over and over “just stay still, just don’t move” and I said prayers with no words. I had no words left, but I knew God heard the words I couldn’t find. I said that prayer and told myself to stay still through the rest of the night, because I knew there were two bottles of Robaxacet within arms reach. I felt like I had nothing left to keep fighting. I was alone. I think the only thing that kept me alive that night was thoughts of my parents, my siblings, and mostly my nieces and nephews. I couldn’t leave that legacy behind for them to remember. I was not raised to give up; I don’t have it in me. When morning came, I realized giving up is really ugly. It’s not an option. What does giving up really mean anyway? If you give up you are still trapped inside the same body, still suffering, but all that happens is it gets worse. It gets even deeper, darker and more lonely. The ultimate giving up is taking your own life. I don’t think anyone who has suffered with long-term chronic pain hasn’t had moments where that thought crosses your mind. You really only get two choices when faced with any crisis: give up or don’t. I chose “don’t.” With that decision sealed in my soul, I became even more determined. That night was the tipping point.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
I have tried more diets and treatments than I can possibly even count or remember at this point. When I discovered the autoimmune protocol, I had already eliminated many of the suggested foods simply from trial and error. Without a doubt, the autoimmune protocol was the first real plan that made a difference, and that happened almost within 24 hours. I started to notice a reduction in pain and more ability to move the day after I made my first batch of bone broth and probably drank more than necessary. I’ll never forget that first crock-pot full of what I now affectionately call my rocket fuel! I headed to my local organic grocery store, found organic grass fed bones and never looked back. That trip to the grocery store was on crutches, with a lot of painkillers, and tears running down my cheeks from pain and just the effort required to get this task completed. If I wasn’t going to do this, certainly no one else was going to do it for me. Like I said, I’m a very determined person. I thank my parents for that trait!
What resources have you used on your healing journey so far and how did you find them?
My first sources for information on AIP and autoimmunity was The Paleo Mom’s (Sarah Ballantyne) blog, as well as Chris Kresser’s blog. It all clicked for me. I need science-based facts to even consider spending time, money and effort on anything regarding my health. Given that Sarah is a remarkable scientist and explained everything so brilliantly, I jumped on board asap. I just knew this was the missing puzzle piece that would make a difference. I found these sources during one of the four-month episodes of disability by simply spending my hours in bed with my phone searching the Internet with every Google combination of words possible. I also found several podcasts that I listened to when my eyes couldn’t tolerate any more reading! I started emailing web pages to myself, that I would later print out and highlight for myself when I could get up. I started my own book! I was frustrated because it was bits and pieces of information and very time consuming to put together while trying to put it into practice, and also while still fiercely battling AS. THEN, Sarah wrote The Paleo Approach and I threw my book out. I never actually thought a day would come that all the information I needed would be so perfectly and completely compiled. Sarah’s book is literally my manual for life. THEN, Mickey Trescott and Sarah both wrote cookbooks! Once again, I felt like this was a miracle. Cookbooks that I can actually eat everything in?! That seemed impossible. Since that first discovery two and half years ago, the number of AIP bloggers and cookbooks continues to grow abundantly. It’s a pretty amazing time to be alive and have all this knowledge at my finger tips. I have a long list of bloggers I follow now and read daily. Life is good. I’m so grateful for them all. They don’t know it, yet, but we are best friends.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
Oh yes. I rejected many treatments. Those kinds of things like holding smoldering charcoal over your belly button for 10 minutes a day. I had a suggestion from an endocrinologist, after waiting nine months for an appointment, that I should, “go home, eat ice cream and pizza, sit on the couch and get fat. You’ll feel better.” Not. Even. Kidding.
When I was first diagnosed, my rheumatologist wanted me to try the standard prescribed NSAIDS for people with AS, as well as steroids. By this time I had learned from Sarah that NSAIDS are not good for me. I was in a tough position because I needed my doctor’s support and help and didn’t want to disrespect the one and only doctor in 21 years who actually believed me and did definitive tests. I’m very grateful for him, but we disagree on treatments, so I struck a deal with him. I agreed to try the NSAIDS for two weeks each, and if that didn’t work we were going to do things my way. He agreed and I went through four prescriptions. With each different drug, it was less than 24 hours that I’d have a flare and it would take months to get back up again. That took nearly a year to get through. At that point he wanted me to take immune suppressant drugs called biologics. These are some serious medications that also cost around $30,000 or more per year with really bad side effects. I said no. I asked him to stick with me and reminded him I gave him a year of my life, and now I wanted a year to heal with food and lifestyle. I asked him to just be patient and watch what happens and be supportive. He reminded me that most doctors would drop me as a patient if I didn’t follow the prescribed protocol, but agreed since he had nothing to lose except me as a patient. I chose to try AIP simply because the drugs didn’t work, and even made my symptoms much worse, and because I believed AIP would work better, if not completely. Turns out I was right, and he’s amused. Last year I was in a bit of a flare after a stressful and sleep deprived Christmas season. I was at his office, and told him I was planning to ride my bike in a one day 400 km ride through the mountains. He actually laughed right out loud at me. We have developed an interesting, respectfully disagreeing relationship, one in which he calls me “Mrs. Spitfire” and laughs at me often. I accomplished that ride, and naturally as a result caused another flare. When I went to see him then, he said “You did WHAT?!” Turns out he didn’t believe me in the first place. This is why I choose AIP. It turns what was impossible, into possible.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?
Absolutely. There isn’t a day that I can remember I haven’t lived with pain in varying degrees. It takes remarkable energy to be in pain constantly. I define what autoimmune disease looks like for me, not let myself be defined it. There is so much more to who I am. Is it hard? Yes. I choose how I live life with intent. I choose to smile, I choose to participate when and where I’m able, I choose to move. What brings me true joy? Well, three things. The first is moving. It’s my profession and passion, and also a gift I’ve been given. I don’t for a second take it for granted; because I know tomorrow could be a day when it’s gone again. When I’m using my body to move through space in strength, speed and agility I’m really happy. The second is being an Auntie. Seeing life through the eyes of a child is remarkable and participating in their lives gives me a new, fresh perspective. They make me laugh, they love big, and they bring love to the surface of my heart. Their unbridled passion for life, to live fearlessly at times, is intoxicating. Many of them are grown adults now, and seeing them live and learn, stumble and get back up again, makes me so proud of who they are. I hang on to the moments with the still little ones for dear life. There’s nothing like it. The third is nature. I’m very blessed and grateful to live by the ocean, mountains and forests. When I’m enjoying these I’m really happy. So if I’m moving, in nature, and doing it with my nieces or nephews, well that’s almost unmanageable happiness.
Simply excellent! I’m writing your words down and taping them on my wall, especially about not giving up. All I can say is thank you and you deserve all the best! This is how awesome perseverance really is.
Thank you Rebekah! Never, ever, give up. There is always more to learn, there is always hope. Remember that even on your most difficult days and nights. You are not alone in the struggle. <3
Thank you for this article- I have been very alone on my journey for 4 years and reading the emotions you had dealing with your illness are so similiar to the feelings I have myself. It is hard to go through something so traumatic without those around you realizing how much your life has been turned upside down. Thank you for sharing your hope that things can change. I am no longer sinking lower, but I find I can’t pull myself up. I am so discouraged that I will be able to comply with AIP- I have failed so many times I can’t count. But I will continue to start over and one of these times I will succeed because I have to.
I’m not sure if this is the best place to leave a question for Jolaine, but I also suffer from AS, and while the AIP has helped to a degree, I feel like I might have to completely eliminate all starches from my diet to see any consistent improvement. I’ve tried this before but I experience extremely negative side effects from virtually not being able to consume any substantial form of carbohydrates, and quickly have to revert to standard AIP, Anyway, I’m just curious as to whether or not you also steer clear of starches, and also if you avoid FODMAPS or anything else?
I also have AS, and like Jolaine, also have hypothyroidism in the form of Hashimoto’s. Although I have been on the AIP, I also have to eliminate ALL starches, and starchy vegetables. My pain at best is a 5/10. Not sure at this point whether to try the biologics but since I have a history with cancer, my choice is either to take a chance of my cancer coming back or to allow my autoimmune disease to take its course even though I am doing my best modifying with diet, physical therapy and stress modification.
I too suffer from AS and have been treating with Remicade for the past 15 years. Long story short, it stopped working for me and I had to find something else to control the disease. Based on the London AS diet, I quit all starches and have gone Paleo. That was 7 weeks ago and I feel great!
To answer your question, YES starches (all well as too much sugar) cause me to flare up. This fact also holds true to several other AS patients in the AS support group I attend that follow the AIP. As far as where the carbs come from, eats lots of fruit!
Good luck and DON’T GIVE UP THE FIGHT!
Thank you so much for sharing your story. It’s so comforting, when you to realize there are other people suffering from auto immune diseases who i) can’t be given diagnoses ii) know to well the alienating feeling and emotional toll which you can’t share with anyone and cant’ really explain iii) doctors think they are crazy or making stuff up! You’re truly an inspiration and I pray God continues to bless and heal you as you continue on from strength to strength. Love from New York,
Reading about your struggle with pain has made me feel less alone. Very inspiring stuff!