My arthritis story begins around the age of five or six, with the first of my bad flare ups. I remember waking up and not being able to walk or move certain areas of my body. Arthritis can be an invisible disease, making it difficult to explain to the people around you. Since I was the only one who could feel the pain and no one could see it, it was a process to convince my parents and family, and then my doctors that something was wrong. Then came the years of searching for a diagnosis and intense treatments.
One of my biggest barriers in finding a diagnosis was that my symptoms would come and go. By the time I was able to see a doctor, my symptoms had gone away again. One day, I had another flare up, and we rushed to the doctor to show her. I saw a multitude of specialists who diagnosed me with anything from having tiny seizures in my brain, to having a hole in my heart. My life became a series of MRIs, X-Rays, and blood tests, all which led to countless misdiagnoses. The lady who drew my blood not only knew my name, but the vein in my arm to use every time I had to go in for a test.
I finally got the answer I was searching for when I met my Rheumatologist, Dr. H. Within the first thirty seconds of seeing me, he was able to diagnosis what so many others had missed. I was diagnosed with Juvenile Rheumatoid Arthritis (RA). It happened so quickly that it was hard to believe what he was telling me was true, after going through years of testing and procedures in search of an answer.
Despite being the only one who was able to diagnose me, I was not the biggest fan of Dr. H, because with him came my years of treatment. In addition to taking three shots a week and physical therapy twice a week, I was told that I should stop playing soccer. He told me that one of my favorite things to do was horrible for my joints and laughed at me when I refused. I played anyway.
I went through years of intense treatments including weekly injections, physical therapy and steroid infusions. Despite the intense treatments, my RA seemed to get progressively worse over time. The joints in my hands became super stiff. It got to the point where I could not even open jars or door knobs by myself. One of my most painful memories were the special splints that my therapist had me wear every night. They were designed to pull my hands back until they made a ninety-degree angle at the wrist. They were supposed to help with my wrist mobility, but they also caused a lot of pain because my wrists were so stiff. I remember crying myself to sleep every night with them on.
My Nana recently told me a story about a day she could not forget. One day, she asked me to climb up a ladder to a loft in one of the bedrooms in her house, to help her clean it. I told her that I didn’t want to, and she got upset with me until I told her that it hurt my hands and arms too much to climb up the ladder. Sometimes it’s difficult for even our closest family and friends to see the pain that we’re in.
One summer, my doctor recommended that I try out a camp for other kids with arthritis. Camp J.A.M. (Juvenile Arthritis and Me) is the place where I finally met other kids who knew exactly what I was going through. Some of my favorite memories from childhood were made at this camp. Camp not only helped me to be comfortable in my own skin, but to come out of my shell and grow as a person. I went to camp J.A.M. as a camper for 8 years, where I met some of my best friends to this day. I continue to go back now as a volunteer counselor.
My time going to back to camp and helping other kids to have the great experiences that I had when I was a camper encouraged me to get more involved with the arthritis movement. I now volunteer at a state and national level and am looking forward to the helping with our virtual walk this year to continue to advocate for those who struggle with arthritis.