Arthritis Insight-Member Stories-Debbie

Debbie

My name is Debbie and I have had JRA for 33 years. When I was 12 years old and in Grade 7, we were learning to play volleyball at school. I could never understand why all the other kids could hit that ball with their fingertips with no ill effects. When that ball came to me, and I tried, I would get excruciating pain in my fingers that would last for hours afterwards. I never told anyone. I just thought I was a wimp. But within weeks, I woke up one morning and my hands were 'glued shut.' They were red, swollen and painful. I was admitted to the hospital, and after many tests, I was diagnosed with Juvenile Rheumatoid Arthritis. I was put on Disperin, and had to soak my hands three times a day in hot water. It took a couple of hours each morning before my hands became 'unglued.'

I had many pain-free years, with occasional flares in my fingers, knees and feet. But I went on to become a Preschool teacher, and later a Teaching Assistant. I have been married for 23 years. I have three sons, ages 19, 17, and 14. Every time I got pregnant, my arthritis got better, but as soon as I delivered, it got much worse. Interesting !!! I am VERY happy to say that none of my boys have inherited this horrid disease?yet! I have been on many different medications over the years. I also continue to have cortisone injections, mostly in my knees. I had an Arthroscopy and Synovectomy on my left knee two years ago, which helped a lot. I will soon have to have my right knee done. I have also had five surgeries on my left ring finger, where there is a boutinere deformity. None of the surgeries have been successful. That finger is now at a 90° angle. When I work with the kids at school, and hold up my hands to ask, "What is five plus five?" they always answer, "Nine!" And when I wipe crumbs off the table, into my left hand, the crumbs fall through my finger onto the floor. Oh well!! It keeps life interesting. The surgeon tells me the only way they can fix that finger now, is by taking a tendon out of my wrist and putting it into my finger. I said, "No thanks!" That poor finger has taken enough abuse. I'm sure I can learn to live with it.

I have always had to be careful about doing things that put too much
pressure on my joints, especially my hands. This is wonderful because I'm pretty sure I'm allergic to housework!! I have someone come in for two hours a week to do the tough stuff, like scrub the bathroom, wash floors, etc. I was on Plaquenil for seven years, and last summer it just stopped working. This past year has been a difficult one for me. I went into a major flare, and had to take quite a bit of time off work. The worst problem I am having now, is with my hips. A recent MRI has shown "significant thickening of the synovial fluid." I often have to use a cane, especially when it rains. I am now taking 15mg. of Methotrexate per week, by injection. It has helped a lot, and I am much better than I was this past winter. I also take 292's for pain as needed. I cannot take anti-inflammatories because I have a sensitive stomach. I expect I will have to have hip replacements in the years to come. The hardest part is that I am now on Long Term Disability because of it all. It has become too difficult to do playground supervision, and go up and down stairs.

However I have learned to take one day at a time. I am looking into writing Children's books, and doing some volunteer work at the hospital. I'm also going to join our local arthritis support group. I have many hobbies, and I love to sew and read.

I love this web site and have read all of your stories, and I have looked at all your photos. My heart goes out to all of you, especially the very young ones who have just been diagnosed. But that's why I'm sharing my story. I am 45 years old, and I am living proof that you can still have a happy and rewarding life, even with JRA. I think the most important thing to do, is to focus on all the things we CAN do, and I not so much on the things we CAN'T. And really???. who needs volleyball?