Cee has been sick since January ’13. She was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis. SOJIA is a long-term battle with ups and downs. The short version is that Cee’s super strength immune system attacks her own joints, so we have to work to suppress her immune system.
Early on I obsessively search the internet for stories of other families going through SOJIA and was very disappointed with the lack of information. It’s my hope that our story can help other families know they are not alone.
Cee had symptoms for three months before I started writing about it. I kept thinking we were going to wake up from the bad dream… …But it became our real life.
I’ve written a lot about our journey. The following posts give an overview:
The beginning of our SOJIA story
How Cee has changed since her diagnosis
“Mommy, am I going to die?”
Worry about losing Cee
Good days and bad days
The conflicting “truths” of JIA
Searching for answers
The uncertainty of the future
Raising a Child with Arthritis: The Worst Book Ever (A Review)
Winter 2016 Update
Applying to Make-A-Wish
Choosing happiness when things are hard
On Rollerskates and Wheelchairs
How we’re left with a flock of questions
Finding that many doctors respond with sympathy and awe
Playing the doctor dating game
Medication Shaming and Natural Supplements
(If you’re looking for more , click on the category or tags on the right for all posts about our SOJIA story.)
Occasionally people ask how they can help There’s a post for that, too.
My big project for Sweeping Up Joy is adding all our old updates in order to have our whole SOJIA experience in one place. I’ve entered the dates on the posts to reflect when they happened in our real life.
As I’ve looked through old entries, going from oldest to newest, I can see how much we really have changed. I remember how bad it really got when I would spend all day trying to convince Cee to drink a few sips of water or go to the bathroom. How I felt like a failure when she was admitted to the hospital because she was in too much pain to eat or drink anymore. How sad it made me to not be able to hug or cuddle her because the pain was so intense. How purchasing a wheelchair seemed like admitting defeat.
Things did get better for a time. She would run. She’d get into trouble. She’d laugh. …There was a stretch where we never heard her laugh. As much as I hoped those days never return, we’ve hit other rough patches. Her last flare ate away all the cartilage in her hips, necessitating a double hip replacement. The earliest such a surgery has been performed is 11.
We’ve been in a holding pattern for about two years now. Two years without pain is inexplicable given her MRIs. So we wait and hold our breath until the next flare hits. And hope. We have to keep hoping.
Thanks for taking this journey with us.