Our Journey with SOJIA

 

Cee has been sick since January ’13.  She went from being a completely fine four-year-old to waking up one Sunday unable to walk.  After three months of extensive testing and excruciating pain, she was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis. SOJIA is a chronic illness with ups and downs.

This isn’t your grandma’s arthritis.  This is super arthritis where the immune system gets all worked up and starts attacking joints.  Her medications work to turn off her immune system (sounds ideal for a family of young kids, right?).  If we can keep her immune system quiet, her condition is stable.  If it gets worked up, the arthritis can start attacking her internal organs.

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.  Writing helped me accept all the emotions and struggles in facing the diagnosis.

I’ve written a lot about our journey in the past in order to keep family and friends updated.   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

 

My big project for Sweeping Up Joy is adding old updates so our whole SOJIA story is 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 have changed.  I remember how bad it 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 devastating it was not be able to hug or cuddle her because the pain was so intense.  How purchasing a wheelchair seemed like admitting defeat.  How we’ve only come through it by the grace of God.

Things are better now.  Cee’s latest medication cocktail is working fine.  She runs.  She gets into trouble.  She laughs.  …There was a stretch where we never heard her laugh.  As much as I hope those days never return, it’s probable they will.  Her last medication worked for a year and a half before it abruptly stopped working.  Then we spent 9 months floundering trying to fix it.  Ups and downs, ups and downs.  We just do our best to appreciate the good days as they come.

Thanks for taking this journey with us.