Juvenile Arthritis Awareness Month: JA and Me
It’s Juvenile Arthritis (JA) Awareness Month and I’ve decided to share the story of my arthritis diagnosis and journey. So grab your beverage of choice, maybe some snacks, and a cuddly furry animal if you’ve got one, because this is a long story.
First Things First: What is JA?
I was one of the 300,000 kids that get arthritis, an umbrella term for the many diagnoses out there. My particular diagnosis is “aggressive erosive nodular seropositive polyarticular juvenile idiopathic arthritis” (JIA). That’s a mouthful and sometimes my jaw hurts, so feel free to just say arthritis. Other types of JA include juvenile lupus, juvenile scleroderma, juvenile dermatomyositis, Kawasaki disease, mixed connective tissue disease, and fibromyalgia. All of these illnesses have an inflammatory component. Read here for more information.
Up until age 13, I was a regular active kid. I was taking ballet classes at Boston Ballet 3-4 days per week, and did other activities with my Girl Scout troop like camping and rock climbing. But I had just come off a pretty rough year. I transitioned to a rigorous new school for middle school, Boston Latin School, which was a catastrophically bad fit for me. I’m really bad at math, and as it turns out, pretty bad at Latin too. I was wracked with anxiety about school and I had missed a lot of time in the winter because of Nutcracker rehearsals. That year I was Clara. If you know anything about ballet, you know dancing that role is a dream come true for a kid, but the school was not exactly supportive. I had also experienced bouts of sickness that we attributed to my anxiety at school. I would get sick on the bus, and I spent a lot of time in the nurse’s office holding a plastic bowl.
The summer was good, and I don’t remember anything particularly notable about it. Once I went back to school for 8th grade in the fall though, I began experiencing swelling and stiffness in the fingers of my right hand. Remarkably, I did not yet have hypochondriac tendencies so I shrugged it off when my mom wanted to take me to the doctor. When we got there, his reaction threw me. He seemed concerned. My pediatrician was a jocular man, passing out back slaps and jokes. I began to get nervous and suggested that perhaps I was just sleeping on my hand and squishing it (oh kids). Sensing my fear, he allowed me to try not sleeping on my hand for a week but ordered me back if it didn’t clear up. I’m sure he must have written the orders for lab work as I left that day knowing I’d be back.
After I went back, I was referred to the rheumatologists at Children’s Hospital in Boston. A lovely doctor examined me and reviewed my results, and very gently delivered a diagnosis of juvenile rheumatoid arthritis (JRA), as it was called back in those days. I wasn’t scared. I didn’t know what I was dealing with. Only some of my fingers were kind of fat. It seemed manageable. I was given prescriptions for naproxen and methotrexate, an anti-inflammatory and a chemotherapy drug respectively, a follow-up date, and I was off on the most frustrating, exhausting, and difficult journeys of my life.
In my mind, it seems like overnight I became a mess. It was as though my immune system heard the doctor and was all, “Okay youse guys, it’s official, we got us some invaders. Time to give ’em hell!” and then all my joints were inflamed. I could barely walk. I couldn’t sit up in bed in the morning without taking my naproxen. I couldn’t pull on my socks. I couldn’t tie my shoes. I couldn’t do buttons. Climbing the stairs was equivalent to climbing a mountain. I needed two sets of textbooks, one to keep at school, one to keep at home, and I still needed one of those super uncool bulky rolling backpacks. The only bonus was my friends would fight to be the one allowed to help me with my bag and take the elevator at school.
My mom is great. She really tried to help me continue my life as normally as possible. I went to school almost every day. I went to ballet, even if I could only stand at the barre and do the arms. She didn’t make me go, she encouraged me, because she knew it was important that I keep living my life. We even went on a planned Girl Scout trip (she was the troop leader) to Mt. Washington that involved staying in a hostel, hiking the mountain, and snowshoeing. I took my methotrexate in the morning and hiked halfway to the summit, which is pretty good for someone who could barely move. Snowshoeing was more challenging, but I gave that my best shot too.
Even though I was trying to keep going, I was struggling. I remember my lowest point. One morning my mom was helping me get ready for school by putting on my socks and I burst into tears. The only words I could get out between sobs were “I don’t want to be me anymore”. I still get teary when I think about that. No kid should feel that way, in pain and exhausted by life. My mom must have been devastated.
Of course, things evened out and the medicine kicked in eventually thanks to some help from a course of prednisone. I kept dancing, increasing the amount of days to 6 per week. I went on to a performing arts high school, the Boston Arts Academy, as well as summer programs with San Francisco Ballet School, Boston Ballet School, and Jacob’s Pillow.
I got a new rheumatologist at Children’s after my first one moved away. Dr. Jean M. Jackson – what a wonder that woman was! She kept me accountable when it came to managing my treatment, for by that time we had discovered my tendency to discard my methotrexate untaken in the trash, but encouraged me to live my life as a teenager. She encouraged me to keep dancing as I became more serious about it. She showed my flexibility off to her colleagues. I distinctly remember her calling someone in from the hall to show them that I could not only touch my toes, but put my hands flat on the floor next to my feet.
Then suddenly she was gone. I came to an appointment one to day to see a different doctor in her chair. I was told she was sick. I didn’t find out she passed away from cancer until years later. My new doctor was brilliant but lacked her bedside manner. I am very thankful to him for everything he did to help me stay well, but I didn’t like him. He actively discouraged me from dancing and said it was bad for my joints. This was my chosen career path, the thing I loved best, and the thing I was good at. When I finally had to quit my most beloved activity around age 18 after a hip surgery to repair a labral tear (and subsequently discovered my hip was eroding), his response was a simple “good”. When I developed serious anxiety and lost a lot of weight from panic attacks he seemed almost annoyed.
I was transferred to Brigham and Women’s. Because of my experience with this last doctor, I was on the defensive when meeting potential doctors. A group of three examined me and asked why I refused to take a certain medication. I fiercely responded that I didn’t feel I had been adequately informed of the side effects and that in my own research I found ones that disturbed me. I hotly added that perhaps the other doctor thought that I wouldn’t research it, but I wasn’t stupid. Only one doctor chuckled at my feisty diatribe and kindly told me that while I was obviously very stoic, stoicism would only get me so far. He’s my rheumatologist now, and I couldn’t be happier about that.
So where has this journey led me? I tried a million different medications: methotrexate, both oral and injectable (ugh), naproxen, prednisone, Enbrel, Remicade, Humira, Siponi, Actemra (intravenous), and Actemra again, this time as a subcutaneous self-injection. I had a hip replacement. My right hand is kind of funny looking. Cortisone shots in my elbows and knees. Anxiety, depression, panic disorder.
No more dancing. No ballet career. No more performing.
I am aware that I’ve also experienced plenty of blessings. I’m blessed to have a family that has helped me navigate JA, from getting dressed in the morning (thanks Mom!), to giving me injections back when I was too chicken to do it myself (hi Dad!). I’m blessed to have friends who are willing to cut me slack when I cancel last minute because I’m tired. I’m blessed to have a great rheumatologist who doesn’t want to settle for “good enough”. I’m blessed that there are advanced medications to treat my condition, and that my insurance covers them. I’m blessed to have had a surgeon who really knew what he was doing when he put in my shiny new hip. Blessed to know what it means to really value the health I have. But would I trade JA for complete and total health? Absolutely, unequivocally, without question. I accept my condition and my limitations, but I still would have preferred it to be different.
I don’t want other kids to have to struggle through life. If my story has resonated with you at all, please donate to the Arthritis National Research Foundation. Thank you for reading, and thank you to everyone who has supported me and cheered me on.