Doctors

Before SoJIA a doctor appointment with a sick child was a relief.  I would leave with a prescription and knowledge about why my child felt ill.

Now we spend four times as long with the doctor every two weeks and I leave feeling hopeless.  Emily doesn't feel well, she's not herself and I am sure the medicine is partly to blame, but all the doctor can tell us is she doesn't know why she is feeling that way.  Her feritin is "jumping" around according to the doctor so while we may (if she gives me a call this afternoon) be able to slowly start dropping the steroid dosage Emily will always be taking Cyclosporene and Kineret.  I knew before about the Kineret, but to find out about the Cyclosporene was a bit depressing. 

I do hope we can start going down on the steroids today.  It will still be baby steps, reducing one milliliter every two weeks.  Sigh.  Emily takes two five milliliter doses a day, that's 20 weeks until we are off them completely.  I hate the steroids the most.  Sure they saved her life, but at the same time I feel like they are transforming her.  She rides in a stroller a lot and we are getting stares more and more because her face has ballooned out.  I can almost hear the judgmental thoughts behinds those stares.  I've got my new pamphlet printed out though and just need to remember to bring it along and hand it out.  After all, May is arthritis awareness month.