Flares & JRA Diagnosis- the long journey from youth to adulthood
I'm feeling like I'm in the beginning to middle stage of the 3rd worst flare of my life. My 1st was in 1987 at the age of 6 years. At the age of 36 now I don't really remember the actual pain. I do remember how the pain effected my daily life. Always having been very active for a "girlie-girl", having 2 brothers whom I kept up and tried to surpass in physical activity. I call myself young self a "prissy tomboy". The sudden, unprovoked swelling of my knee to 4x the size of my thigh, my mom took me to the hospital leading to a week’s stay. She tells me (as I don't remember except for the knee) that they found arthritis in my knees, ankles, wrists, and a few fingers. Halfway through the hospital stay I could no longer walk. Upon leaving the hospital the Dr. told my mom there was a very good chance that when I graduated HS I’d be crossing the stage in a wheelchair. I was sent home with a walker and remember doing physical therapy to re-learn and be able to walk. I was put on an aspirin regimen as apparently there was nothing else available for me at that age.
Being left out
When I eventually went back to school I wasn't allowed to participate in PE or recess. I became much more introverted and onto quieter, more still behavior, i.e. reading and watching TV. By first grade the bad flare was under control and my young Mama thought that I'd been miraculously healed. I spent much of my youth alone or playing quiet activities with my younger brother, as my parents worked and were rarely home. I knew there was still "something wrong" but didn't vocalize it as I was often told I was just being lazy. I spent most of my time on the couch watching TV or reading. Not in pain per say, more that I felt weak, worn out, and always tired, often exhausted. In my teen years I started telling Mama that something wasn't right, that I wasn't like my peers, SOMETHING WAS WRONG. I think my mom didn't want to believe that the RA had never left, scared of what that meant for me she thought that if she didn't address it, it didn't exist.
No Sleep and Depression
When I was 17 I started having severe pain only at night in my hips that kept me from getting much sleep. When I was 18 my mom finally admitted to me that she did believe something wasn't right, however she blamed my maladies on depression. I'm sure I was depressed but my symptoms weren't a product of my depression, my depression was a product of my symptoms.
Bye for now....
I have to cut this off now as I've just been overcome with exhaustion. I will say that I finally got a dxd of JRA again at the age of 30 thanks to an attentive PCP and a wonderful, caring Rheumy. Will tell more about my 24-year journey (from 17 years on) next time. Thank you for reading my story so far!
When was your last flare?