Tuesday, November 30, 2010

Love my instincts

Well, we did manage to get Emily in to see her pediatrician today.  Despite it being a Monday, their busiest day, when Kevin called to make the appointment, upon hearing her name they found a way to get her in.   I'm honored, yet terrified at that.  We are on the first week of Prednisone decrease, and I'm happy to say that she hasn't gained any weight since Tuesday!  She hasn't lost, but she hasn't gained.  I take that as a blessing.  I always wonder if I'm overreacting by taking her in with what others would think of as almost nothing.  She has just been more tired, which could be from the steroid decrease or the JDM flaring back up.  (She does have more active rash on her back and chest, and her fingers are looking red again.  She said that her arms are tired again, and her legs, too.)  Her nose has been crazy stuffed up.  And she has a little cough at night.  Could be from the steroid cushioning.  But I always get that nagging.  She's not technically sick, but our pedi could see it brewing.  Upper respiratory or sinus infection, we caught it before it could sneak in.  I can't believe we caught it so fast!

On our way out, our doc pulled me aside and told me that it was a bit of a shock seeing her that way.  She told me how sorry she was, that she hated seeing her like this.  I pointed out that, as heartbreaking as it may be, she is walking.  It's going to be a long, hard road with no certainties or promises, but we'll make it.  We always do.  One day at a time.  She reminded me to keep her out of recess and PE since large steroid doses can make your bones more brittle.  Yeah, I'm not happy about that either, but I try to remain positive because it's the only way.  And really, it could be so much worse.  Not trying to sugar coat or downplay her condition.  Just saying that we still have many ways in which we are blessed, and I try to count them all.

I finally dragged her out clothes shopping today.   I had to promise her McDonald's, but we finally got her some new clothes.  The poor little thing couldn't button her pants for a bit there, yet she still didn't want to go on the rare occasion that I had time to.  I think she's still somewhat in denial.  She doesn't want to see herself at her current weight.  She misses her old things, and she's uncomfortable.  I think buying new stuff was a bit permanent for her, but it needed to be done.  Little boo should be set now for a while.  One nice thing right now is that her Raynaud's isn't acting up.  I'm worried about that, too, but I'm helping her to take advantage of it!

I'm a little curious about myself.  It started with my elbow before taking that awful antibiotic.  After a week on the Levaquin I couldn't get up in the morning, and both knees, elbows, hands, wrists and ankles felt like I was an RA patient.  I've been off of it for a week now, and it is getting better but I'm still in pain, too.  I had to take my wedding set off of my left hand.  I thought that the pain was coming from there.  That finger is very swollen, but the pain is coming from my middle finger and the middle of my hand.  My wrists are still bad, and my right elbow.  I had been wondering for a while because of my shoulder and elbow, and my hands locking up a few times before the medicine.  It's probably coincidence, but when you live with RA around you every second I guess it makes sense to worry about.  I don't have time to deal with my own issues right now.  I will check into it soon.

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