A Diagnosis Story
I was born a healthy and active baby in 1977. My mother likes to recount how I enjoyed climbing the cabinets and furniture, that I was physically active and bright. But around age one, my left knee began to swell and I started walking with a limp.
Searching for answers
Although I didn’t complain much, my parents were concerned. They traveled many miles to take me to doctors and specialists. One doctor said that I was faking and trying to get attention because my grandmother had recently broken her hip and was walking with a limp. How that explains my obviously inflamed knee, I have no idea.
These were the days before anyone had heard about juvenile rheumatoid arthritis (RA)—before you saw multiple ads on the television for new drugs to treat RA. My mother remembers seeing a public service announcement featuring a young girl sitting in a rocking chair with a voiceover explaining that it may seem unlikely, but this child was very sick with juvenile rheumatoid arthritis. It scared my mother and resonated with her even before I was diagnosed.
Receiving a JRA diagnosis & treatment
Finally, after about a year, my parents found a new pediatrician who the moment he entered the room said “this girl is very sick.” He admitted me overnight for more tests, which confirmed a diagnosis of rheumatoid arthritis. That day I met my rheumatologist who followed me until adulthood and one of many orthopaedists I would eventually consult.
At that time, I think my rheumatologist had few child patients and I don’t remember seeing any in the waiting room. There was no one else in my world like me and, for my family, this was uncharted territory. We would learn that it also was much the same for the medical community. For most of my life, we have been forging a new path while grappling with my rheumatoid arthritis.
My first treatment was liquid baby aspirin that my mother had to squirt into my mouth and persuade me to swallow. I remember resisting treatment—all the nasty tasting medicines, painful exercises, splints and more.
Looking back on living life with RA
Looking back on 34 years of RA, I am actually surprised by how little has changed about what we know about rheumatoid arthritis. The medications have evolved, but the knowledge about who gets it and why, how it starts, why some cases are harsher than others, why some go into remission, why some remissions end—there are many more questions than answers.
In my case, I had an aggressive form of RA. My doctor tried me on the evolving treatments of the time: Plaquenil, prednisone, Relafen, Naproxen, gold shots then capsules (yes, that would be real gold). But my RA raged on with no sign of abating.
Several times I had cortisone shots. My parents remember carrying me into the doctor’s office when I was four and received a shot in my left knee—my first affected joint and the most problematic throughout my life. We came home and I ran, tumbled and played like nothing was wrong. The miracle of strong anti-inflammatories!
At age 10 I suffered a severe flare and lost the ability to walk for several months. After medications failed to help I had a cortisone injection in my hip. It worked like magic! I practically danced out of the treatment room!
But my RA spread aggressively over the years. In my early teens, I needed to use a wheelchair to support my mobility. Gradually I lost joint range-of-motion and strength. My treatments focused on maintaining my abilities, slowing the destruction of the disease. And I also had to learn to adapt—to find supports and tools that would allow me the life I wanted: college, work, independence, travel and more.
The importance of resilience
My RA story is not about winning. It is not about conquering a disease or even keeping it in check. My RA story is about resilience. It is about smiling despite pain. Thriving despite limitations. And defying expectations of what it means to live well and happily with a serious chronic illness.
To manage my condition, I’ve tried a lot of drug regimens, alternative therapies, diets, exercises and surgeries. To date, I’ve had both my knees and hips replaced. Plus, a knee revision just earlier this year. I’ve seen doctors come and go, along with treatment fads and miracle diets. It amazes me to think that I’ve had RA longer than many people ever will, and I plan to live a good deal longer yet.
Sometimes I wish I could send a message to the little girl with the swollen left knee, making the best of things with her limp. I want to tell her that although her journey may be hard, it will be rewarding. That while it may be difficult to have to be so strong at a young age, her strength will sustain her, along with the love of her family. And lastly, that she will know great joy and love in her life despite her disease.
But then again, maybe somehow I already knew.
How often you do experience an unexpected boost of energy?