Friday, August 14, 2009

Don't Get Too Comfy

JUST when you think you are on an even road....

JUST when you think it might be (gasp) licked...


JUST when you start making future plans & setting the course for stretching medicinal intervals....



Then we get the reality check of what's really in control here. The disease.

Charlotte's routine eye exam, this week, showed a cell floating in her left eye. They call it a "trace". Waiting two days to hear from her uveitis specialist in Boston (Dr. Stephen Foster) on what that means exactly, has been deflating. Because thoughts are just racing of what this could mean or not mean.

He replied today that this one cell, a trace, is "trivial." But as one fellow JRA-mom said t o me, "I hope that one cell doesn't have friends..." & that's my worry exactly. Would love to have a Dr. set my expectations, is a trace something that could happen throughout her life? At some point (and we are nearing 2 years with Charlotte having this disease), I would like to handle & deal with more grace, the bumps, hiccups, & the"trace"! Its hard to not get frustrated & angry about these bumps in the road even if they are, as her Dr. put it, "trivial."

2 comments:

Team Houston said...

Big hugs!! xoxo Michele

Fahrenheit 350° said...

I'm with Team Houston! Big hugs!! I can feel for you, and know what it is like to live with a disease myself, and family members with diseases - good luck! You'll be in my thoughts!