A childhood in Ace bandages

A Childhood in Ace Bandages

No one had a clue about my arthritis at the time, but in retrospect there were many RA precursors present in my childhood. When I was six years old my white blood cell count was so low that my pediatrician deemed it unsafe for me to be exposed to all the viruses and infections first graders bring with them to school. I was kept at home for three months until my weekly blood tests indicated that my white cell count was high enough to return to school. No one has ever linked this to my rheumatoid arthritis, yet given that RA is an autoimmune condition it has certainly left me wondering if that was the beginning of a healthy immune system derailing.

Starting around the time I was eight years old the joint pain started, and I was diagnosed with countless sprained wrists and ankles. I was perpetually in Ace bandages; my mom kept so many on hand that I was able to wrap up my life-size Barbie like a mummy one Halloween. I remember overhearing my fourth grade teacher say that she would be worried about me if I weren’t doing so well. Presumably she meant that if I weren’t such a happy kid and a good student she would suspect that I was either being abused or was exhibiting attention-seeking behavior. Looking back, some concern was warranted: not for my emotional well-being, but for my physical health. My parents always took me for regular medical visits, and took me to the emergency room a few times when a wrist or ankle was so painful they worried I might have broken it, so there was never an issue of neglect. Rather, I think this speaks to how little was understood about RA, even by medical professionals.

Once I was in middle school my knees were the biggest source of pain. My mother has always been a big proponent of chiropractic care, so when the achiness in my knees would ramp up she would take me to the chiropractor. While I hated the cracking and popping sounds my bones emitted in those visits, getting a donut from the bakery next door made it worth it. Interestingly, I found some benefit in addition to the sugar fixes, as my knees did seem to improve for a few days or even weeks after a chiropractic adjustment. However, the pain eventually became severe enough for my parents to take me to an orthopedic surgeon. He did not provide a diagnosis, but showed us the swelling and cartilage deterioration evident on my x-rays, and suggested that I give up soccer in favor of a lower impact sport.

In high school, I did indeed give up soccer; however, it wasn’t the pain that finally made me give up a sport I loved, but rather fatigue. I was struck with such intense fatigue my junior year that I missed several weeks of school as my mother shuffled me from doctor to doctor in search of a diagnosis. Mononucleosis, the usual suspect in teenage fatigue, was ruled out, and blood tests didn’t reveal the culprit. My mother’s search for medical help led us to an immunologist in Atlanta, seventy miles from our hometown, who diagnosed me with chronic fatigue syndrome, which was a rather new term at the time. It was somewhat comforting to have a name to link my symptoms to, but as there weren’t treatment options to go along with it, the diagnosis was not a game-changer. Looking back, I certainly wonder if the fatigue was actually caused by RA.

In college I continued to have joint pain, and my wrist was so bad that I spent about a year in a splint with a misdiagnosis of tendonitis. My orthopedist was baffled as to why my wrist didn’t seem to improve. It was not until I was 22 years old, a full 14 years after my early symptoms had set in, that I was diagnosed with rheumatoid arthritis. I am curious as to how medical care has changed in the past 30 years, and whether it was really a diagnosis of juvenile rheumatoid arthritis diagnosis that would have been most appropriate all those years ago.

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