My journey with JRA begins at age two. One afternoon, my mom came home from work to discover that my right knee was very swollen. Alarmed, my mom took me to the Johns Hopkins Hospital ER. Within a week, I was diagnosed with Pauciarticular Juvenile Rheumatoid Arthritis. My case was referred to Dr. Sills who placed me on Naproxen, Methotrexate (an aggressive chemotherapeutic agent), Prednisone (a harsh steroid), and Folic Acid (to thwart some of the effects of the Methotrexate) to combat the disease. After a few months my disease progressed and I had inflammation in virtually every joint in my body; Dr. Sills labeled my disease as Polyarticular.
Around age four, my mom and I relocated to Florida. There, my care was referred to Rheumatologist, Dr. Rivas-Chacon, at Miami Children’s Hospital and Ophthalmologist, Dr. Miller. Soon after the move, it was recommended that I see an aqua therapist and a physical therapist. We quickly became acclimated to my new schedule which included AT and PT visits three times weekly, eye exams once a month, rheumatologist visits and blood work every other month and, of course, meds every day and injections once a week. Within six months of enduring this treatment plan, the majority of my inflammation was completely gone. I was taken off the Prednisone and my doctors agreed it was safe to end the AT and PT and lower my dosage of MTX. I had achieved my first remission!
Every time I went to see the Rheumatologist, he decreased my MTX dosage more and more, until a few months later, I experienced a flare-up, beginning in my right knee. As the disease progressed, Dr. Rivas-Chacon amplified my MTX dosage and suggested I have two cortisone injections in my knees without any form of anesthetic. I underwent this procedure and experienced no benefits whatsoever. This infuriating cycle of getting better, then flaring-up continued for years. Throughout this never-ending rollercoaster ride I was never taken off of Methotrexate; yet, I remained very active through dance, karate, and soccer. I was always doing something!
Around age 11, I experienced yet another flare-up, and my MTX dosage was, again, increased, but this time my liver had a nasty reaction to the drug, and I found myself almost confronting a liver biopsy. The dosage was promptly lowered in hopes of showing improvement. My liver quickly recovered, but my joints didn’t. With the help of Prednisone, my disease went into remission. This remission lasted three lengthy years! It was great! Though I still had to take my MTX and Folic Acid, I didn’t suffer any pain from the JRA.
I am now fifteen years old, and just about two months ago, after we all thought I conquered the JRA for good, my right knee became inflamed. But, that wasn’t my biggest dilemma. I was just diagnosed with osteoarthritis (due to the damage the JRA had already done to my joints) and malalignment of the patella in my right knee, both of which cause me discomfort. In addition, I was recently referred to a cardiologist and nephrologist due to hypertension, shortness of breath, and chest pains. Plus, I’ve had a few episodes of nystagmus, so my ophthalmologist referred me to a neurologist. The past two months have been packed with doctors’ appointments, scans, ER visits, blood work, tests (including a thirty-day cardiac monitor), EKG’s, and echocardiograms; and in addition to MTX and Folic Acid, I shortly found myself taking Lisinopril, Zofran, and Naproxen. After all of this: still no diagnosis.
As I reminisce on my battle with JRA, I can remember the pain, the doctors’ appointments, the shots, and the pills, but I don’t recall ever feeling upset about it. It truly didn’t bother me. I think that’s what amazes me the most about children; no matter how bad things are, they are always blissful. We can learn a lot from little warriors like Ayla. And although I’m not happy I have JRA, I believe I have reaped many benefits from living with it. Having JRA has taught me to have empathy for others who are in pain, not to sweat the little things in life, and to be thankful for my wellbeing; sometimes I may not feel healthy, but there are many others who have it a lot worse. It has also given me the opportunity to meet a lot of great people and learn a lot of things. Whenever I go to the Rheumatologist’s office, I show the medical students how to do things! As for the future, I plan to beat my JRA (and keep it away forever), become a Pediatric Rheumatologist, and find a CURE for Juvenile Rheumatoid Arthritis.
Hope Ayla and everyone else is well!
Feel free to leave Jessica a word of encouragement, I am sure she will be reading this post :)
Thank you so much for taking the time to read about something that means so much to me!