AIP Stories of Recovery – April 2018

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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 let us know by filling out our interest form.

Kirstin’s diagnosis journey is perhaps the one we fear the most: slow, gradual loss of muscle control and motor skills, to the point where walking was impossible without ambulatory devices. Coupled with a devastating breakup, Kirstin’s “rock-bottom” moment was one we can only imagine. It’s truly remarkable to read about her metal shift from anxiety and depression to determined perseverance. This Story of Recovery reads like fiction, but it’s anything but. 

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

My health issues started in December 2014 with a slow, cruel spread of numbness, furious pain, and loss of control. From a seat inside myself, I watched, terrified, as my body crumpled into a pile before me. It began with a persistent numbness in all of my toes, which I initially dismissed it as being temporary. Over the next few weeks, I realized that my fingers were numb and tingling as well, and I could sense that something was not right with my body. The numbness and tingling sensations slowly crept upward in all four limbs, and, by mid-January, I had begun to notice issues with my balance and coordination. I could no longer run or walk in a straight line. It was as though my brain could not tell my legs when and how to move. I felt out of control, uncoordinated, and extremely confused. It was terrifying. There was no denying that something was wrong.

My primary physician ran a series of blood tests and an MRI to rule out multiple sclerosis, all of which came back normal. It took several months of test after test to finally get seen by a neurologist, which I basically had to demand. My walking by that time was clearly off balance, with slow, jerky movements. The neurologist had me walk up and down the halls, on tiptoes, and in tandem (heel-to-toe) fashion. The deficits were obvious. I could not tandem walk without holding onto a wall, and I could barely walk on tiptoes or heels. My doctor immediately ordered a nerve-conduction test, followed by a spinal tap. The results indicated that my nerves were definitely conducting at a significantly slower rate for someone my age. The spinal tap revealed that my protein levels were 10 times greater than the normal level.

After months of pure fear of the unknown, I was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare autoimmune disease that strips the myelin off of the nerves and wreaks havoc on body, mind, and spirit like a violent storm. In its wake, I was left unable to walk independently, unable to withstand my regular routine due to fatigue and weakness, and unable to perform simple activities of daily living. The pain, weakness, and instability was enough to throw me into an anxiety-ridden hole that I desperately wanted to claw my way out of.

Describe what the lowest point on your health journey was like.

My lowest point coincided with my diagnosis date. My first response to the diagnosis was profound relief. I finally knew what was wrong with me. There were treatment options. There was hope. I could move forward. But the more I researched my illness, the more stories I came across of others with CIDP who never fully recovered, who wound up in wheelchairs needing assistance from caregivers with daily activities.

Over time, I developed a gripping fear around my illness, and I found myself spontaneously sobbing in the midst of struggling to complete activities that I previously did without thinking — getting dressed, taking a shower, even sitting down and standing back up, were all painful and difficult, sending shooting nerve pain down my legs and significantly challenging my ability to balance and coordinate movements. By May 2015, I was walking with a cane and fairly close to transitioning to a walker.

After IVIg failed miserably, leading to an agonizing bout of aseptic meningitis, I was started on Prednisone, which jump started my healing process but had terrible side effects. Over the next two years, I went on and off the Prednisone, going into periods of remission and relapse, which meant taking one step forward and two steps back. Throughout all of this, I was overcome with crippling fear, psychologically engulfed in a ‘why me’ victim mode, weak and barely able to move without pain. This was, without a doubt, the most challenging time in my life. However, I can honestly say that I persevered. Even at my rock bottom, I continued to pull my broken body out of bed to make it to work, ambulatory devices in hand.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

My tipping point had little to do, yet everything to do, with my CIDP. It came in disguise as a devastating break up. I had dated my ex for six years. We had been best friends for four years prior to becoming romantic partners, so it was really more like a 10 year relationship. At year ten, I was diagnosed with CIDP. I was terrified of becoming completely dependent on others but relieved that have built-in support in my relationship.

Just as I was starting to feel intense glowing gratitude for my partner, who for once in our relationship was taking care of me in my time of need (as opposed to me taking care of her), she left me. It had been three weeks since my official diagnosis.

My body felt weak and broken, my nerves incredibly painful and inflamed. It hurt to sit, to stand, to move. But the hurt of being abandoned by the person I loved more than anyone else in the world was more painful than neuropathy. My heart was shattered.

The pain that I endured over the next year was both monumental and transformative. It was this added emotional burden, this perceived and very real abandonment in addition to the mental and emotional anguish that accompanies chronic illness that forced me to say “enough is enough. No more victim mode. Done. With. That.”

I vowed to heal myself. Determined is an understatement. I began scouring the internet for options, screening anything and everything related to healing from autoimmune disease. One of the first things I came across was the Autoimmune Paleo Protocol. I am beyond grateful for the profound discovery that came with it: that I can heal my body, mind, and spirit through nutrition.

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

I first delved into the subject of dietary changes for reversing autoimmune disease when I discovered The Wahls’ Protocol, by Dr. Terry Wahls. I immediately began implementing her paleo protocol, stripping my diet of grains, legumes, dairy, processed sugar, and any other inflammatory foods and adding in copious amounts of bone broth, leafy greens, high-quality meats, and colorful vegetables and fruits.

Within a few weeks of strictly sticking to my guns, I slowly but surely started to feel better. My endurance increased, my nerves began to heal, and I felt strength and stability gradually returning. Progress was definitely present but painfully slow. I continued altering my diet, playing with food reintroduction and then reverting back to elimination when that didn’t work. Eventually, I narrowed down which foods I am sensitive to and which ones make me feel energized and healthy. I got off the steroids and officially went into remission after about a year of experimenting.

The most impactful change that I made was in switching to a ketogenic version of the autoimmune paleo diet. Not only did I notice dramatic reductions in my numbness and tingling sensations, I also got some added benefits. My energy levels skyrocketed, my anxiety was significantly reduced, and the heavy brain fog that I didn’t even realize I had was lifted. Food is now my medicine, and I am loving what is has done for my mind, body, and spirit.

What resources have you used on your healing journey so far and how did you find them?

Aside from dietary changes, I also drastically altered my lifestyle. My job in Seattle was stressful and unfulfilling. I felt incredibly alone and devastated by CIDP and my break-up, so I made the decision to move back to Portland, OR, where I was surrounded by amazing friends. I felt supported, with room to heal and grow. I got a job working at the state hospital, following my passion for working in the mental health field. I reconnected with family members. I read every book and article I could get my hands on relating to healing, positive thinking, dietary and lifestyle changes, the works. I tried it all– acupuncture, chiropractic care, massage, meditation, yoga, gratitude journaling, the works.

Perhaps the best resources I have come across in my healing journey have been books and recovery stories written by people who have overcome autoimmune disease or another chronic illness. I love Mind Over Medicine, by Dr. Lissa Rankin!

In terms of dietary resources, my three favorite cookbooks, all of which have helped me immensely, are The Healing Kitchen, The Wahls’ Protocol Cooking for Life, and The Autoimmune Paleo Cookbook. Each of these resources spark creativity and excitement when it comes to cooking and eating in line with the autoimmune paleo protocol.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

To be honest, I have lost a lot of faith in Western medicine practitioners. I have been through the ringer in terms of seeing multiple different doctors and specialists, and not one of them suggested dietary changes as having healing potential. In fact, most doctors (aside from a naturopath that I saw) have told me that nutrition and food have little or no impact on autoimmune disease. I beg to differ.

My doctors threw IVIg and corticosteroids at my health problems and made no moves to recommend much else. While I agree that the Prednisone was helpful in the initial stage of my recovery, the long term side effects (weight gain, skin issues, moon face, loss of bone density, and so on) are incredibly detrimental to the body. Staying on corticosteroids for long periods of time is simply not sustainable and only treats the symptoms of disease, rather than addressing the root cause.

I took matters into my own hands by studying nutrition and lifestyle changes that fulfill the deep-seated needs of my mind and body and make me feel alive and empowered to be my own best health advocate.

I honestly believe that CIDP was my body’s way of urgently telling me to wake up. I needed to learn to love myself, to believe in miracles, and to balance my life on every level. I have now found the job of my dreams, newfound energy through holistic nutrition, a wonderful partner, and ultimately, life balance. Thank goodness I didn’t listen to everything my doctors told me.

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?

At some point in my healing journey, I had a transformative revelation. I realized that my suffering was meaningful. It had purpose. I had purpose. Intuitively, I knew that I was destined to heal myself so I could help others do the same. I believe that we create our own purpose in life. What we ascribe meaning to, what we give power to, that is our purpose. My purpose is not only to be a healer, but also to lead by example and to empower others to be their own healers, which brings me to now.

What brings me joy right now is sharing my story with others seeking hope and remission from autoimmunity. By combining my passion for writing, occupational therapy, and helping others, I started a blog to build a community of people committed to holistic healing for autoimmunity. This brings me true joy.

I am now on a mission to supplement my occupational therapy degree with a nutritional therapy consultant certification through the Nutritional Therapy Association, and I couldn’t be more excited. I cannot wait to share my joy and experience with others, so that they too can heal themselves!

Be sure to follow Kirstin’s story on her blog, Happiness Heals AI, and on Instagram and Facebook.

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer, content coach and yoga teacher from Seattle, and the Blog/Social Media Director for Autoimmune Wellness. Grace designs websites and creates content that capture how great her clients are so they can effectively and authentically share their expertise with the world. She also shares recipes and explores how to live her most vibrant life on her blog.

3 comments

  • Mary Umbrewicz says

    I love your personal story so much. Thanks for the effort to share. I think victim mode needs to be a high school course. And thanks for the great writing too. I practice Ayurveda,and my emphasis is food…. so yippee for food is medicine

  • DD 30 says

    God bless you & thank you for your story & encouragement to others who suffer from CIDP. Western medicine is driven by Big Pharma and greed – Dr’s recommend what is “approved” by the FDA – pushed through the system and supported by Pharma lobbyists. If it doesn’t make Big Pharma profits – you wont hear about it as a suggestion from your Dr. It is so sad; You want to believe that you go to your Doctor, and they would provide whatever means to improve your physical condition & health. Instead, I have found that they are simply a tool to deliver Big Pharma profits.
    What better way to protect long term profits when you have a patient that never heals — in fact more times than not, the primary medicine requires additional prescriptions for treating the side effects! Brilliant!!

    I wish we could change the system.

    In response to your comments::

    “To be honest, I have lost a lot of faith in Western medicine practitioners. I have been through the ringer in terms of seeing multiple different doctors and specialists, and not one of them suggested dietary changes as having healing potential. In fact, most doctors (aside from a naturopath that I saw) have told me that nutrition and food have little or no impact on autoimmune disease. I beg to differ.

    My doctors threw IVIg and corticosteroids at my health problems and made no moves to recommend much else. While I agree that the Prednisone was helpful in the initial stage of my recovery, the long term side effects (weight gain, skin issues, moon face, loss of bone density, and so on) are incredibly detrimental to the body. Staying on corticosteroids for long periods of time is simply not sustainable and only treats the symptoms of disease, rather than addressing the root cause.”

  • Linda Dingeldein says

    After reading this story, I felt hope! Thanks for sharing your healing journey. I do realize that this journey certainly has taken you through a mountain of pain! For those of us with chronic pain, I really feel that food does often become our well of health and healing.

    I am currently a month into the Autoimmune Wellness Protocol. I am so thankful for everyone who is a “virtual” support to me. I am so thankful that you had the courage to persist even when it was hard and painful to get out of bed! Your life story will encourage all who listen! You certainly cause me to go on another day! Thanks.

    I suffer from peripheral neuropathy and extreme muscular pain. At times I think my body is going to seize up and just stop working. In the course of a three-day period I was numb from head to toe – but, even after a lot of tests I only heard the “good news of what I didn’t have!” I still have no diagnosis, but long for the brain fog, muscular pain, fatigue etc. to dissipate so that I can think clearly and not live under a haze. I long to feel normal again!

    *If anyone knows anything about neurological celiac disease I am desirous to read more about this. Thanks!

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