Unfortunately, like millions of others, I have had an extremely long and painful battle with autoimmune diseases. The most debilitating have emerged in the past few years and are the illnesses that have inspired me to serve as an advocate for the autoimmune world.
My journey with autoimmune disorders began long before I even understood what autoimmune diseases were.
When I was about 7 years old, I was diagnosed with psoriasis, a skin condition that caused me to get small red, flaky circular dots all over my entire body. This made me incredibly self-conscious. Every year when t-shirt wearing season kicked off, I prayed I wouldn’t be in a psoriasis flare. I didn’t want my peers to be grossed out by my condition or fear they would catch my disease (even though psoriasis is not contagious – something I’ve learned to say immediately when I am explaining the skin disorder to someone unfamiliar with it.) I honestly never even liked to say the word Psoriasis – to me the name itself sounds gross. Like the name of a dinosaur. Which made me think of a dinosaur’s skin. Ergo I have skin like a dinosaur – great.
In conjunction with the complex it gave me, it also proved to be incredibly time consuming and frustrating. Treatments never fully seemed to work, or they took forever to make an impact. I have tried just about every treatment available to help my Psoriasis when I am flaring from applying thick, gunky steroid cream every night before bed, to getting up unbearably early before school to get light treatments at the dermatologist’s office. To this day I still get psoriasis flares and many of these same feelings and frustrations still resonate with me when they occur. However, my Psoriasis has become the least of my worries.
Before I get to the most difficult time in my autoimmune journey, it is worth mentioning that shortly after I was diagnosed with Psoriasis, I was diagnosed with Hypothyroidism, a condition in which the thyroid gland does not make enough thyroid hormone. I was on medicine and saw an endocrinologist regularly for a several years until my numbers eventually stabilized and I was able to go off of the medicine. I mention this because although it did not have a major impact on my life, I was still on medicine and it is categorized as an autoimmune disorder.
Now, finally, I would like to share with you the experiences that have shaped the course of my life and inspired me to start this blog. In the summer of 2011, I was newly 19 and enjoying my vacation on the beach in Maine. In the weeks prior, I had been in physical therapy for my left knee due to what doctors believed was a work out related injury. Throughout my time vacationing, I had begun to notice that I was feeling slight body aches every morning when I woke up. I attributed this to the unsupportive mattresses at the beach house but should have realized that I’m a college student and I can pretty much sleep anywhere — which means that something was wrong.
When my family returned from vacation, I began to go downhill fast. Literally, one morning I woke up and I could barely move. I felt paralyzed. Any move I made caused excruciating pain in my joints. I could not even turn over in my bed without agonizing discomfort. My Mom was dressing me, feeding me, bathing me – essentially doing everything for me. I gained twenty pounds in one week from severe inflammation.
And so the doctor’s appointments began. I was tested for lyme disease, had countless x-rays and excessive vials of blood drawn. Throughout this time I was placed on heavy painkillers, which did absolutely nothing to take away the pain. I was finally diagnosed with psoriatic arthritis, arthritis that occurs in tandem with psoriasis. However, my parents and I were never fully comfortable with the diagnosis. Often people who suffer from psoriatic arthritis only have joint pain in isolated areas while mine spanned over every single one of my joints – from my jaw to my feet. We proceeded to see more doctors in Boston, the medical capital of the world, and received five different opinions all stating the same diagnosis.
At this point, we had to believe it. I remember the doctors telling me I should take the semester off from school but I had just completed my freshman year and LOVED it. I was devastated at the thought of not returning. I began the semester a few weeks late. It was a daunting task to attend school in the state of inflammation my body was suffering from. I was put on Humira along with steroids but was continually getting sick and therefore unable to give myself the injection. I would wake up for school every morning much earlier than I needed to so that I could take a hot shower to soothe my aching joints. Everyday was a struggle. My body was in constant battle mode, which made me sore and exhausted.
In January of 2012, I was back at school and headed to an appointment with my Mom to drain fluid due to inflammation from my knees. Out of nowhere, I felt excruciating stomach pain, unlike anything I had ever experienced before. My Mom and I initially thought it was a stomach bug and I headed home for the weekend to recover. We soon realized it was not a stomach bug and I ended up in and out of the ER three times that weekend. The staff thought that I was faking it and continually sent me home. I had every test under the sun run on me but each one came up negative.
Finally, I was admitted into the hospital. I was constantly being poked and prodded by all different doctors and nurses; continually being asked if I was happy at school and if everything was OK at home. It was so frustrating to me that they thought I was faking it. I was in unbearable pain. I couldn’t even drink water without feeling pain in my stomach. I was on 90 milligrams of morphine and it didn’t even come close to taking away the pain.
As a last resort, the physicians ran a camera study. I swallowed a pill and it took pictures every three seconds as it moved through my digestive tract. We anxiously awaited the results which revealed that I had several bleeding ulcers in my small intestine. I was diagnosed with Crohn’s disease and completely caught off guard. I had never even heard of Crohn’s disease. I was thankful to have a diagnosis but at the time I had no idea what I was in for.
Two weeks later and 25 pounds lighter, I returned home and took the rest of the year off from school. I spent the better part of five months bed ridden. Even a task as simple as grocery shopping with my Mom wore me out for the day. I was so frustrated because I was sick of lying around doing nothing but every time I tried to do something my disease took over and knocked me out.
The doctors started me on Humira again, but after tapering off of a steroid and increasing the medicine to the highest dose and frequency, it just wasn’t working. I switched over to Remicade in the summer of 2012, which initially appeared to work.
I returned to school in the fall and although I had made significant improvements with my illness, it was still a burden on my life. I was frequently exhausted and experiencing joint pain. I was forced to continually increase the Remicade dose. I ended up on the highest possible dose, receiving an infusion every four weeks. This still was not cutting it and I ended up going into a severe flare with debilitating joint pain.
In January 2013 I added 6mp – a medication used for cancer patients, to my regiment. The thought of starting a medication that was used to fight cancer was scary but I was willing to do whatever I could to make the biologic work. Currently, there are only a few biologics on the market that work to fight Crohn’s and I didn’t want to give up on Remicade until I was sure we had exhausted every last option.
We tried to make the Remicade work for as long as possible but we ultimately knew it was not going to be a long-term solution as I had built up antibodies to the medication. At this point I needed something different. Remicade and Humira both have the same mechanism of action, which my body clearly did not respond to. My options were limited but my doctors came up with a smart solution and decided to put me on Stelara.
Currently, Stelara, a biologic, is only approved to treat psoriasis and psoriatic arthritis. It is in testing for crohn’s disease and will hopefully be passed by the FDA soon. Since I still have a psoriatic arthritis diagnosis, I have access to the medication – and it has been a GODSEND. I am FINALLY feeling myself again for the first time in two and a half years. My joint pain, stomach pain, fatigue and other symptoms are completely under control. I am in remission and I feel amazing.
I am so thankful for all of the people who have supported me on my journey. It certainly hasn’t been easy for me, but I know that it has not been easy for them either. I have suffered many dark and scary moments throughout the past two and a half years and I am so grateful for everyone that has stood by my side.
It is my life’s mission to raise awareness for autoimmune diseases so that no one has to suffer through what I, and millions of others have endured. This blog is the first step in reaching my goal.