My Autoimmune Journey
My journey is ever evolving.
But this is what I have so far…
The college years…
My freshman year of college I got Epstein-Barr virus, commonly known as “mono.” . It was after my experience with this virus that I believe my body started to change. At the time I thought it was fairly normal to get mono and just assumed that eventually my lingering fatigue would dissipate. Eventually it became my new normal. I compensated for my decreased energy with increased determination. The first semester of my sophomore year was extremely stressful. I was balancing being a collegiate athlete with my my most challenging academic classes AND my clinical requirements for my athletic training major. I went for 6 months without a period. I had never in my life had regular cycles, however 6 months was a long time even for me. I was referred to an OBGYN by my PCP who recommended that I gain weight and start the birth control pill. I remember feeling angry at that appointment. I had already gained 15lbs over that same 6 months that I had not had my period. I felt dismissed. My mother and I decided that taking the birth control pill was not the best option for me and I opted to take a one-time dose of hormones to restart my cycle. However, even following that intervention my cycles continued to be highly irregular. Although I knew this wasn't normal I had the impression that there was nothing my doctor could do to help me with this. My senior year of college I did start taking the birth control pill. I also began to notice other changes in my body that didn’t feel normal. I began having increased headaches, nausea and my tongue started to show signs of swelling when I woke up in the morning. I saw the campus doctor who proscribed an Epi pen. Eventually this also became a new normal. I graduated from undergrad with a double major and a stellar GPA. I ignored my physical symptoms because they did not inhibit me.
I was balancing being a collegiate athlete with my most challenging academic classes AND my clinical requirements for my athletic training major. I went for 6 months without a period.
Then came graduate school…
The summer after I graduated college I got married and then began physical therapy school in the fall. I remember this time as being stressful as I was trying to figure out how to be a “good wife” and still meet the high expectations that I set for myself academically. I began having significant neck pain that lead to me giving up my lifting routine. I also had the unfortunate experience of having a concussion during the time. My headaches worsened and I started experiencing other physical manifestations. I began vomiting regularly and also started having painful rashes surrounding my eyes. I assumed the headaches were secondary to the concussion but sought care for both my gastro symptoms and for my skin. I received blood work including an allergy panel from my PCP which was negative. I was told that I was fine. I believed it. My vomiting tended to happen during weekends or special occasions and I (and everyone else) assumed I was just drinking too much. I saw a dermatologist for my face. He ran an ANA blood test to test for autoimmune disease because my rash resembled a butterfly rash common in Lupus. The blood work was negative. He prescribed me a steroid cream. He also told me I was fine.
I saw a dermatologist for my face. He ran an ANA blood test to test for autoimmune disease because my skin irritation resembled a butterfly rash common in Lupus. The blood work was negative. He prescribed me a steroid cream. He also told me I was fine.
Eventually the vomiting became more consistent and became bothersome even when I was not consuming alcohol. It was during this time that a wonderful co-worker of mine suggested that I may have an intolerance to gluten. She suggested that I do an elimination diet to see if there was something that was effecting me. She told me about The Virgin Diet. I purchased the book and started on my first elimination diet/adventure. I noticed a drastic difference in my symptoms. I stopped vomiting, my skin improved and I felt overall better. I realized upon removing these foods that I was also experiencing joint pain and brain fog that I didn't even know that I had been experiencing. When I reintroduced food I noticed changes in my skin with dairy, brain fog and nausea with gluten and joint pain with soy and corn. I have not eaten gluten since that time, and now only vomit if I have the stomach bug.
When I reintroduced food I noticed changes in my skin with dairy, brain fog and nausea with gluten and joint pain with soy and corn.
Then I entered the working world…
Things were good, for a while. I continued to eat gluten free and only consumed dairy, corn and soy in limited amounts. I graduated from physical therapy school. I got a job. I was living the dream until I started noticing pain in my abdomen after I ate that was consistent no matter what I ate. Eventually it was discovered that I had a cyst in my abdomen. I had it removed by a surgical oncologist. It was benign. However I continued to have abdominal pain that did not resolve. I had many scans and tests after the surgery that all came back normal. I was told I was fine. So I sucked it up and decided to that if I was truly fine I could pursue my goal of completing a residency in orthopedics.
The cyst was benign. However I continued to have abdominal pain that did not resolve. I had many scans and tests after the surgery that all came back normal.
I was told I was fine.
So I pushed the physical warning signs aside and enrolled in a residency program. I learned a lot in the program but it was rigorous and therefore stressful. I began experiencing increased headaches, facial numbness and dizziness along with a strong resurgence in neck pain. I saw a neurologist and an orthopedic surgeon who both ordered tests and imaging which came back normal. I decided around this time to discontinue birth control since my headaches and stomach problems had started around the same time that I had began birth taking the pill. Discontinuing birth control decreased the frequency of my headaches but did not improve my digestion. I completed another elimination diet at this time. This time I choose to do a Whole 30. I felt immense improvement during the elimination but noticed during the reintroduction period that I tolerated even less foods without consequence.
I felt immense improvement during the elimination but noticed during the reintroduction period that I tolerated even less foods without consequence. I made it through the last part of my residency program by following a very conservative diet.
I made it through the last part of my residency program by following a very conservative diet. However when I was finished my symptom list remained long. My job remained stressful and I could feel the physical effects of the stress on my body. I was fatigued. I decided to cut hours back at work temporarily to try to get a handle on things. I attended many medical appointments each week with few answers provided and also spent time focused on studying for my specialist board exam. I got viruses several times during this period and each time it felt like after my acute symptoms resolved I bounced back a little less resilient. The stress of time culminated in the week in March that I was supposed to take my exam. I live in the northeast and the weather during this time period is unpredictable. My exam was canceled two times secondary to weather before I had the opportunity to take it. After the adrenaline from this experienced subsided I was left with zero energy. I had a hard time standing at work. I spent my days off laying around recovering and attending medical appointments. Was this the life I had worked so hard for?
I spent my days off laying around recovering and attending medical appointments. Was this the life I had worked so hard for?
I returned to my PCP who ordered blood work to try to determine the source of my fatigue. This time the ANA was positive. I was crushed. In my education as a physical therapist I had learned that autoimmune diseases were typically genetic and did not have a cure. I felt like I was doomed to live forever with the symptoms I was experiencing. I started to grieve my old life.
I was referred to a Rheumatologist for additional evaluation. However the first available appointment was 6 months away. I knew that I couldn't wait that long to start to feel better. My experience with using food to help modulate my symptoms was a catalyst to the world of integrative health and functional medicine. I started researching The Autoimmune Protocol but ultimately did not feel as though I could handle the stress of such a restrictive diet. I instead focused on altering my mindset, slowing my movement practices and increasing my willingness to rest.
The blood work results provided more questions then answers. Eventually I made peace with the fact that it may be a while until I received a formal diagnosis and I continued to pursue lifestyle change.
By the time I made it to my rheumatologist I was feeling a bit better, but was still far from feeling well. She listened to my experience. She ordered more testing and told me that she thought it was likely I had a lot of food intolerances that I didn't know about yet. Although I appreciated her openness to a lifestyle approach I felt like the diet that I was eating was already very restrictive. I was not in a place emotionally to restrict any more. I also felt invalidated by the lack of diagnosis. My orders for blood work were accompanied by ICD-10 codes for fibromyalgia and chronic fatigue syndrome. The etiology of these syndromes are still widely debated and largely misunderstood. I was also nervous by wide array of possibilities that the next round of blood work might show.
The results from the blood work provided more questions then answers. Eventually I made peace with the fact that it may be a while until I received a formal diagnosis and I continued to pursue lifestyle change. Instead of further restricting food I worked with an integrative RD to help me improve my digestion and gut function. I also continued prioritize healing in other areas of my life.
I am truly grateful for the time I spent resting and processing my fear and anger. It allowed me to approach the very “restrictive diet” with a mindset of abundance and love for myself as opposed to hate and resentment.
Slowly but surely I started to feel better. I continue to prioritize my health by allowing my body to rest, consuming nutrient dense food and focusing on mindset and connection. Eventually I stopped being angry with my body and came to a place in which I wanted to support her in the best way possible. It was about 1 year after I had initially researched the Autoimmune Protocol that I decided to give it a try. It has been a fascinating and empowering journey. I have learned that foods that I had previously incorporated on a daily basis (including eggs and nightshades) are big triggers for my symptoms. The protocol has not been as stressful as I imagined. However I am truly grateful for the time I spent resting and processing my fear and anger. It allowed me to approach the very “restrictive diet” with a mindset of abundance and love for myself as opposed to hate and resentment.
I decided to become a health coach because I saw a need throughout my journey for compassionate care for women with autoimmune disease and chronic pain.
I believe in thriving.
I am one year into my AIP journey and I am more physically resilient that I have been since college. I have come to a place that I truly believe in healing. I believe in thriving. And I believe you deserve to thrive too. I decided to become a health coach because I saw a need throughout my journey for compassionate care for women with autoimmune disease and chronic pain. I believe that food can make all the difference. However, I believe that your mind has to be right, you need to allow space for emotional and mental healing as well. Sometimes that means not doing all the food things at first. I don't believe that healing is black and white. I believe you have to weigh the best medical evidence with your intuition and your emotional and mental health. I also know this journey is easier with support. You don't have to walk alone.
