Wednesday, April 4, 2012
As I sit here with Jordan hooked up to Orencia, I remember why I started this blog. When she was diagnosed in 2005 I remember feeling totally lost, confused and alone. I had no idea that kids could get arthritis. 6 months later Jordan’s eyes became involved. I knew it was possible but I didn’t think it would actually happen. She was supposed to “grow out of” JA in a year or 2. When her eyes started in her rheumy reassured me that she still had a mild case of JA and that the eye involvement wasn’t really serious. Of course now I know different.
In 2008 I decided to research more and I set out to find other families like ours. I wanted to hear first hand what exactly we were dealing with from parents who were living with the diseases. I stumbled upon a Yahoo! forum but I didn’t feel like I belonged. I’d ask questions but often didn’t get a reply. I learned a lot just from reading the Q and A from the core group. I realized that J was being grossly under treated. The fact that her eyes were in a constant flare didn’t seem to bother her rheumy or opth. They both felt that her uveitis would eventually “burn out” and she’s be fine. No lasting affects. Well, no such luck. We’re now of year 7 with the JA and 6 ½ with uveitis. She has damage in her knees and eyes.
I’ve learned so much about our health and how you need to advocate for yourself. You MUST go with your gut if something feels wrong. Because I didn’t follow my gut, Jordan will suffer with the lasting affects of her disease. Had she been treated properly in the beginning, I don’t think we’d be where we are now.
I’ve had people contact me through Facebook, YouTube, Twitter and via this blog. At least once a week I have someone telling me that are glad they found us because they felt alone for so long. That’s exactly why we blog.