I remember the day perfectly, January 19, 2017. My mom and I were out shopping for my senior prom dress. I remember on the drive to the store, my lips and fingers began to tingle and go numb, but I was so excited to go prom dress shopping that I didn't say anything about it.
As we got to the store, I noticed my body getting more stiff by the minute. Sorting through the dresses was getting harder and harder. When I finally found one I liked, I tried it on.
When I pulled the curtain back to show my mom, the look on her face was one I'll never forget. I was red from head to toe.
My mom called our family doctor immediately and he told her I was probably having an allergic reaction to something and gave her a list of medicines to give me that should act on it pretty quickly.
But it didn't.
Luckily, we were about ten minutes from a great ER that saw me very quickly after I arrived.
After about five hours in the emergency room, lots of blood work, and a lot of medicine, the doctors chalked it up to a viral infection that would go away in a few days. They sent me home with some steroids and hope that this was something that wasn't a big deal.
I wish they would've been right.
For the next few months, I would have terrible, itchy hives that covered me from head to toe every single day. My joints would get so stiff that I could barely move on my own. I would have fevers up to 104 degrees that had no explanation.
It was the last semester of my senior year of high school and all I wanted was to feel normal.
This would continue for six months. I went to the doctor once every two weeks for around six months. I had a team of five doctors, and nobody could figure out what was wrong with me.
Prom, graduation, senior trip, things normal seniors were getting to do, I couldn't. I was struggling to roll over in the bed by myself.
When June rolled around, things got pretty serious. I couldn't function on my own anymore. My parents had to dress me, help me walk, and even hold a cup up while i got a drink out of it because my body was too weak to do it on my own. Two of my doctors decided to send me in for a CT scan and noticed a lymph node that was abnormally larger than the others.
Cancer.
The one word that nobody wants to hear was music to my ears. "At least I would know what was wrong," I said to everyone that was so distraught by the word.
The doctors sent me to a surgeon to have a biopsy of the lymph node.
No cancer.
The relief was there, but so was the confusion. They were so sure they had found what it was, but here we were back at square one again.
Luckily, I got an appointment with a doctor at Vanderbilt University Medical Center.
I went the following week to Vanderbilt, told the doctor the entire saga of everything that had happened, he looked over my five thousand lab reports, and said,
"I believe this is Still's Disease."
Adult Onset Still's Disease, described by the Mayo Clinic, is a rare autoimmune inflammatory arthritis that features fevers, rashes, and joint pain that is thought to be caused by a viral or bacterial infection.
This doctor ran some tests that my other doctors had not even known about and low and behold, Still's it is.
So he started me on immunosuppressant therapy, which meant I have to give myself a shot in the stomach every day, and a simple thing like sitting beside someone with a runny nose can cause me to catch something way worse.
However, just being able to sit beside someone with a runny nose is a blessing in disguise for someone who couldn't do that for so long.
Although my journey with Still's is far from over, I'm so thankful to have found a doctor that knew what it was and how to treat it. My main goal is to raise awareness for this rare disease. If my other doctors had known about the tests to check for Still's, I might've been diagnosed months earlier than I was.
There are days when it seems like this disease has won. There are days where I am so exhausted from just living because my body can't keep up with a normal pace of life. But Still's Disease does not define me; not now and not ever.
