My First memories of Juvenile Arthritis

#RAblog Week is a seven day event from September 21-27, 2015. The brainchild of Rick Phillips, the goal of this week is to raise awareness about rheumatoid arthritis and build community. Hop on over to the RADiabetes site to learn more about #RABlog Week and find links to other participants.For Day 6 of #RABlog Week, the prompt was to write about our first memories of RA.

One of my first memories of RA is also one of my first memories, period. My mother is pushing me in a stroller along a dirt road not far from the cottage my parents had rented for a week. The sun is shining, the air smells of pine and sand, and I can hear the crunch of the stroller wheels as they move over the path. I know I am too old to be in a stroller, but my left ankle is swollen and it hurts to walk. We think it’s a particularly nasty mosquito bite. I am four years old.

 Me at about 3 years old, 

shortly before symptoms of JA first appeared

I’m sitting in a crib-like bed, the sides composed of thin, high metal bars that prevent me from getting out of bed on my own. It was white once, but now the paint is peeling and I’m pretty sure I spent some time picking at it myself. It’s boring being in this bed and in this room. I remember it as all white, with florescent light in the ceiling. In the flashes of memory, I look over to the right and see the door, white in a white wall, and always closed. The door has a small window near the top. Strewn over the white blanket that covers my legs are toys that my mother has brought me. Once, my mormor (grandmother) and Aunt Paula came to visit. I remember Paula’s fabulous fur hat and that she ate my lunch so the nurses wouldn’t get mad because I hadn’t eaten it myself. The food was terrible. I was in the hospital in isolation with a diagnosis of rheumatic fever. I was four years old. After three weeks, my mother took me home over the doctor’s protests.

My parents and I are getting off the bus. We’ve been to visit my mormor and morfar, at one of the large family gatherings they host on a regular basis. It dark outside, late, and way past my bedtime. I’m tired and hurting, and the short walk home seems insurmountable. My father lifts me up and carries me home in the dark through the quiet suburban streets. We don’t know why I hurt all the time, but I feel safe in my dad’s arms.

I’m in a doctor’s office, my mother sitting behind me. The doctor wears a white coat and glasses and he holds my hands in his. This is all I remember from a pivotal, life-changing moment in my life. My mother has told me the rest. That he took one look at me and said “Lene, you have juvenile rheumatoid arthritis.” That’s what it was called back then, now my kind of arthritis is called juvenile idiopathic arthritis. I was nine years old. It had taken five years and numerous visits to different doctors to get a diagnosis. The other doctors had dismissed my parent’s concerns, told my mother not to worry when she asked if maybe I had juvenile arthritis, even suggested she see a psychiatrist. In the end, she was right.

That was just the start of many hospital stays, many doctors, treatments that didn’t work, and so much pain, all on the path to bilateral hip replacements and a power wheelchair when I was 16 years old. One day, I’m going to write it all down.