Autoimmunity takeover // My story part 1

The past year of my life of my life went from completely normal to suffering from my illness. During those dark days searching the internet for answers I would stumble on stories. Maybe someone will find my story and feel there is hope. 

It was the average Friday and I was more than eager to enjoy the usual outing with my friends after a long taxing week. Like most of the working class, weekends were sacred. This week was stressful but tonight would make up for it, for sure. I breathed in the satisfying summer night’s air not realizing it was actually one of my last evenings like this.

I had felt more tired than usual that summer but I had chalked it up to starting a full time job as a graphic designer after graduating from my bachelors degree that May. Accompanying this was the strange new migraines I was getting every few weeks; they would impair my vision and even cause my hands to go numb. I couldn’t lose weight no matter how hard I tried and I was always either suffering from a cold or insanely bad seasonal allergies. I recall updating my status to read, “Who gets sick with a cold in July? This girl.”

All of the foreshadowing seems like a bright red flag now, but at the time I accepted them as normal. I still worked my nine to five job. I still went out with my friends on the weekend. I never thought to see a doctor.

My 22^nd birthday came and it was nothing like TSwift describes. My energy continued to plummet until one night while out to dinner the room felt like it was spinning. I felt like I was going to faint. At the time, I thought I was having an allergic reaction to shrimp, and went to the hospital. The emergency room dismissed me as “dehydrated.”

The following week I could barely work. I would always try to, but would end would end up lying face down, embarrassed in the conference room. Within a week, I had to stop going in all together, unable to even leave my bed.

My body began to falter fast. The dizziness and the faint feeling worsened, followed by chronic headaches. One day I would wake up and my hair started falling out, the next day my vision would be blurry and remain that way for months. I couldn’t tolerate loud sounds or bright lights; watching television or going outside was too much to handle. I was always hot, and my face would turn bright red. My heart would race with any physical activity. I was so fatigued I could barely prepare myself food or use the bathroom. I would shower sitting down. I was afraid to be alone.

Within a few weeks, I was back at the emergency room. They ran more extensive tests, and when they came back negative they called in a social worker. They told me it was anxiety- that the symptoms were in my head.

The medical chaos continued. It seemed like no doctor wanted to take me on as a patient, either brushing my symptoms off as “anxiety,” or “migraines,” or my personal “favorite” worst answer: “You are a perfectly healthy 22-year-old- go out and live your life but take prenatal vitamins to prepare for childbirth.” How could I live my life when I was having trouble just sitting up to eat dinner? How could he assume I was thinking of having a child when I could barely take care of myself?

My symptoms were ambiguous- nothing seemed to add up. I had seen more than twenty doctors, every kind of “ologist” you can think of, each making me feel more hopeless then the previous one. Each day started fading into the next, falling down what felt like a depressing rabbit hole. There wasn’t a doctor who was going to be able to help me; my health had to be taken into my own hands.

Two months later after my dad heard a story from work, I asked my doctor to have my thyroid checked. Despite resistance from her, I pushed for the test, and it came back as hypothyroidism (meaning my thyroid gland wasn’t producing enough hormones). The thyroid controls your metabolism, temperature, mood and even heart function. I was prescribed a pill that would produce the hormones my body lacked. There was hope this would make me feel better, but it only did so much. After a month on the pill it was clear there was something else going on.

After hearing about my illness, my aunt who lives across the country messaged me explaining she was very sick until she learned she had Celiac Disease, a disease that causes gluten (a protein found in wheat, barley and rye) to damage the intestines. Because of my genetic predisposition, I got tested and it was positive. I went gluten free, and while it helped some I still had raging symptoms.  By January I had been laid off, feeling more depressed than I had at any point before.

“I don’t understand why Kate can’t come out with us,” some of my friends would say. It was bad enough not being able to leave the house- hearing something like that would make it worse. Fortunately, there were a lot of people in my life who understood how I felt and I was so lucky to have family and friends who took me to doctors.

Each day was a struggle to do anything; my brain could not focus and I could barely read or write. I would lay on the couch with an icepack behind my neck, battling constant headaches and dizziness. Sleep was impossible; I would wake all throughout the night feeling uncomfortable.

In February I started going to physical therapy for my dizziness. Although all of my symptoms were still there, the dizziness improved drastically. I finally felt safe to shower home alone and cook food by myself. I was improving, but still struggled to feel normal, questioning what could I do to improve now?

I had heard of The Autoimmune Solution by Amy Myers, since my mother bought be a book about it in December. I knew it was a huge life change and I struggled to read anyways, so I did nothing about it even though I had two autoimmune diseases (Celiac and Hypothyroid) and I knew my aunt with celiac disease benefited from a diet similar to it. The book seemed so daunting and foreign to me. It was not recommend by an actual doctor, so I wondered if dieting so drastically would help me. One doctor told me, “why limit your diet like that; life is too short to not be enjoyed!”

Then I had a bizarre reaction to a gluten-free cookie. I was directed to avoid all grains (rice, gluten free flours, ect.) until I was tested for food allergies. Strangely, going grain free seemed to help my headaches and brain function- I even found it easier to read.  So I read the book and I started to learn the effects our diets can have on our bodies. Avoiding grains is a huge part of TMW so I began to believe it would help me.

I started to eat like a cave man- minus the hunting and gathering part. I eliminated all refined foods (dairy and grains) along with anything processed. Next I eliminated foods that cause inflammation (your immune system’s response to invaders) like eggs, corn, tomatoes, nuts, caffeine and more. I could only eat seafood, grass-fed meat, a tiny amount of fruit and organic vegetables. The diet helped but there are a lot of struggles that came along with it (read about it in part two: healing from autoimmune).

It is now the end of May and I completed over two months of TMW. On a getaway with my family and boyfriend, I went hiking and swimming, something I could have never done a few months or even weeks ago. My parents were impressed with the progress. I lost 13 pounds so far without really trying- the first time I’ve ever lost significant weight in my life. After conventional medicine failed me, it feels good to take my health into my own hands.  There is still much healing to do- I just have to be grateful and patient with the progress so far. I don’t know when or if I will ever feel like my old self again, but at least there is hope after what seemed like a long despairing winter.