Saturday, February 2, 2013

Rheumatoid Awareness Day: My Onset Story, Part I

What an exciting day! The 1st Rheumatoid Awareness Day organized by the Rheumatoid Patient Foundation is today, 2/2/2013! Just as Punxsutawney Phil came out of his burrow this morning to mark Groundhog Day, today is a “coming out day” for me as a long-time Rheumatoid Disease Patient.

I have shared pieces of my onset story with members of the #rheum community on Twitter over the past couple of years, but have never published it. Today I add my voice to many others for the sake of Rheumatoid Disease awareness. You may recognize these patterns.
One ganglion cyst is visible here on my left hand.

Around age four, I developed ganglion cysts on the tops of my hands. I remember finding them gross and uncomfortable. I was terrified the doctor would drain them, or use the old-fashioned remedy of striking them with a tome to “pop” them. Luckily, after a couple of years, they went away.
Happy with my dad and siblings. 70's awesomeness.

According to my mother, during my childhood, I frequently complained of pain in my legs. I was small for my age, diagnosed with a one-and-a-half-year growth delay. Curiously, my pain was explained away as "growing pains" by my pediatrician

A sufferer of frequent respiratory infections, I missed many days of elementary school. I remember daily exhaustion, barely able to stay awake in school from about 2nd grade on. I despised P.E., which usually involved team sports with my peers, who were all larger, more developed, and more athletic. I was always the last to be chosen for the team.

My extracurricular activities away from school were much better, but very tiring. I loved ballet and tap dance, tennis, piano - anything where I was allowed to progress at my own pace.

When I was 10 I went with my family on a two-week trip. I was paired with my grandmother, and we walked and walked, eager to see and experience everything. We visited several major museums, a favorite pastime. During one daylong visit my knees both ballooned; they were unrecognizably boggy and painful.

When we returned home, my mother took me to her adult orthopedic specialist. He drained my right knee, immobilized it for several weeks, and ran blood tests, looking for autoimmune arthritis. Everything came out negative. My mother was asked about family history, and she gave him no indication of any, because she did not know of any. I was sent back to my activities after the swelling receded.

We thought this episode was over and life would go back to normal. We were wrong.

My Onset Story, Part II 


  1. Shannon, thank you for sharing this. Your story makes me sad because far too many of us have suffered in silence, with no voice or actual diagnosis for so long. This day we celebrate for so many reasons- recognition, awareness, understanding and HOPE! I am so impressed by your strength and can't wait to read the rest of your story :)

  2. Shannon, Roxanne and I send our love to you. No diagnosis is the worst. I wish we still had a pet groundhog to lend you to keep your feet warm tonight.

  3. Thank you, Larrah, Jay, and Roxanne, for your support. What a day it was! Loved the picture of Roxanne holding your cute groundhog! I'll have to make do with a Bassett hound at my feet. More story to come!