52 Years of JRA/RA… and counting.

I have had JRA/RA for 52 years. I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) in nearly all my joints in August 1971 at age 12 at Children’s Hospital in St. Louis, MO. My Mom started taking me to doctors at age 5 because she noticed I walked different than the other kids. As she watched me walk with my two friends to my first day of kindergarten, she saw I walked stiff the way an old frail woman would walk. Something was obviously wrong and though my pediatrician told her back at that time that it was Juvenile Rheumatoid Arthritis, it took her seven years to get a diagnosis from a rheumatologist. I don’t think I was very helpful in her search for answers, though, as I never complained of pain. Why complain? To me, this was normal. I thought everyone felt like that every day. Anyway, the doctors backtracked and figured out that I had actually developed the disease in 1963 at age 4. In 1971, at age 12, doctors at Children’s Hospital started me off on 12 aspirin a day. I had to back off that dosage pretty quick as I developed a moon face that wasn’t too pretty and obviously told doctors they were overdosing my size 6x body. Everyone knows now, and maybe some knew then, that aspirin did not stop the disease. It didn’t even come close. And I was to be one of the lucky ones who developed the adult form of rheumatoid arthritis. Joint damage occurred very rapidly for me and, by age 19, I was told I had to have my hips and knees replaced. In the meantime, I married, began raising my family, went to school, and started working. I didn’t want the surgery. I mean, I had work and school and children to think about… and managed to put off the hip replacement until 1987. So I was 27 years old when I had my bilateral hip replacement and I’ve now had them more than half my life. Many more surgeries were to come over the years. I had my hips revised in 2002, adductor muscle repaired (it failed to reattach following the revision) in 2004, a right ankle fusion in 2008, and after so many years of pain, I finally overcame my fear and had my knees replaced in 2011 and 2012. Then in 2013, my ankle fusion incision reopened and I had to have surgery to repair it. Next week (3/26/15… my 56th birthday), I’ll have several things done to my left foot. These include fusing my big toe, straightening my toe, fixing the bunion, removing spurs. Many, many more surgeries await me… of that I am certain. In fact, every remaining joint in my body is bone on bone. Next up will be surgery on my hands and wrists and thumbs and then shoulder replacement surgery (bilateral). But it’s important for everyone to know that I successfully raised some pretty terrific kids, earned a high school diploma, an Electrical Technology diploma, and a Bachelor of Arts in Psychology, had a very successful 25 year career in Construction Project Controls (cost and schedule), managed to work and live in 14 different cities, including Singapore, and now enjoy my husband, my family, including five beautiful grandchildren, along with lots of travel and leisure time. And that’s the thing… life goes on BEYOND Rheumatoid Arthritis. Sure, I get down sometimes. Sure, I ask “why me” sometimes. Sure, I hate the ridiculing, being different, being unable to do things others do. Sure, I still hate having had to give up my career and go on disability. Sure, I despise surgeries and recoveries. Sure, I hate being so fatigued every minute of every day. Sure, I hate having to take morphine every day to take the edge of the pain off just to be able to function. Sure, I hate waking up every single morning for 52 years in pain. I mean, what a way to start a day, huh? But I’ve still had a wonderful life in spite of this disease and I still plan on continuing that trend even though I’ve been considered “end stage” for over 36 of these years.

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