By Stacey Capes, 37, Papillion, Neb.; diagnosed with JRA at 18 months old
When I think about growing up with juvenile rheumatoid arthritis (JRA), it evokes many memories, both positive and some negative, but I would definitely say mostly positive.
When I tell someone I have rheumatoid arthritis, I seem to always hear, "You are way too young to have that." They are even more surprised to hear me say I have had it for the last 35 years.
When I was first diagnosed at 18 months, the best available treatment was gold injections. My mom was very hesitant to have her young child receive such a powerful medication. My rheumatologist told her that the other option was for me to be in a wheelchair by kindergarten. I began with the gold injections and continued them on a weekly basis for the next 14 years. They were very painful and always left a large knot in my leg where the shot was given. I would get so anxious every week before the nurse gave me the shot, and I remember always leaving the doctor’s office with a really bad stomachache.
I wore braces on my legs until I was at least 6. It was really hard as a child to explain to other children what was wrong with me, especially since I didn't completely understand it myself. I remember some children making mean comments to me at school and I always wished I could participate in a lot of the activities the other children were doing.
I definitely believe having JRA filled my childhood with many positive memories. I was very active with the Arthritis Foundation as a child. I had the opportunity to be their national poster child, and was able to participate in many fun events. When I was 6 years old, my mom and I took a trip to California and I filmed a commercial with the actress Victoria Principal, who was a spokesperson for the Arthritis Foundation at the time. I also was able to go to Disneyland, Seaworld and Universal Studios. What child wouldn't love that? I was involved in the Arthritis Foundation telethons every year, and also attended many galas and special events.
My childhood is filled with so many great memories that I have only because I have JRA. I wouldn't change it for the world. I also will forever owe it to my mom for becoming so involved with the Arthritis Foundation. I wouldn't have such wonderful memories if it weren't for her. She took a negative situation and turned it into a positive one for me. With all of these great memories, it is sometimes hard to remember all the pain.
Unfortunately, my JRA has continued into adulthood. I am 37 now, and still have to take treatment for it. It is amazing how many options are available now to treat rheumatoid arthritis. Most recently, I have been taking Humira injections, Plaquenil, and a whole lot of ibuprofen! Occasionally I will get cortisone injections in my knees when the swelling gets too bad. The newer biological therapies have been such a blessing. They have worked very well for me with very few side effects.
I am able to live a very full life, chasing around a 2-year-old and also working 12-hour shifts as an registered nurse (RN) on a busy hospital unit. The way I think of it is, I have JRA, but JRA does not have me. I can't imagine how different my life would be if I didn't have it, but I know if I were given the choice, I wouldn't change a thing.