Life with JRA

At the age of 17, I was diagnosed with Systemic Juvenile Rheumatoid Arthritis. Before my diagnosis, like many others, I thought arthritis was something only elderly people had. But, after three months of pain in all of my joints, a massive weight loss, and sleeping up to 18 hours a day, I quickly learned that arthritis is a real possibility at any age.

It started normally enough – a dull ache in my knees. I’d convinced myself it was a late growth spurt (just a few more inches!), but when the pain started to spread to my ankles, toes, hips, shoulders, elbows, wrists, hands, fingers, neck, and pretty much everywhere else imaginable, I told my parents who took me to the doctor.

My family doctor told me early on that he thought I had JRA, but he sent me for blood work and with a recommendation to see a specialist. I had the first six vials of blood taken that day… I stopped keeping track of how many they’d taken after I hit 200. While my symptoms started in early April, my diagnosis didn’t come until July. Since my rheumatoid factor never popped positive, the best way for diagnosis was to eliminate every other possibility. I’d been hospitalized and taken multiple trips to Riley Hospital for Children. I’d been through blood cultures, body scans, and bone marrow extraction. I was tested for Lyme disease, leukemia, lymphoma, and host of other diseases I can’t pronounce. When the diagnosis finally came, I was grateful to have a name for it, but it didn’t make it any easier.

While I was sick, I lost 15 pounds. Once I got on a combination of medicines, I gained 12 pounds in 10 days – a nightmare for a senior in high school. While I felt better, I was still exhausted and achy. I had to relearn how to live again, and find my limitations and boundaries.

Studies say that over 300,000 children in America live with arthritis. That’s a conservative estimate, as no recent studies have been conducted on the actual number of children with arthritis and related immune diseases. Additionally, millions of young adult live with arthritis.

This is something that affects my life each and every day. I’m a 27-year-old English teacher who has to wake up early for work so my joints can get used to moving after sleeping. But, I’m one of the lucky ones. On a day-to-day basis, my arthritis only affects me in the mornings and evenings, unlike so many others who have been crippled by the disease.

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A few summers ago, I had the privilege to attend the National Juvenile Arthritis Convention in Hershey, Pennsylvania. There, I was able to meet so many children and young adults who live with this disease. They are some of the most extraordinary people I’ve ever met.

One day, on a break, I went to the pool at the hotel just to be outside. There, a group of children from the conference were swimming while their parents were in sessions. As two boys splashed around, one said to the other, “We’re the luckiest kids ever!” And the other little boy said, “I know!” Tears immediately welled up in my eyes. These are kids who have to get weekly injections of biologics in order to control their arthritis so they can walk. These are kids who have faced ridicule from classmates who didn’t understand why they sometimes had to use wheelchairs. These are kids who face immense amounts of pain each and every day of their lives. These are kids who are amazing. 

There are so many things I’ve learned from having arthritis. I’ve learned how to enjoy everyday, even when they’re not perfect. I’ve learned how to make JRA a part of my life without letting it define me. And, slowly, I’m learning to accept support from others. The Arthritis Foundation has made all of this possible. I can’t wait to see what the Kids Get Arthritis Too event can do for others like me. 

Kids (and Teens!) Get Arthritis Too Family Day
Saturday, March 26, 2011
9 a.m. – 1 p.m.
Marriot – Downtown South Bend 
http://AFKidsGetArthritisSB.kintera.org/

- Angela
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