Monday, May 17, 2010

Got any sugar? Trying to make lemondade.

Well, it's been a day.  Please forgive me if I don't make any sense... writing with a migraine.  For starters, Kevin had an interview this morning that seemed very promising, but alas it would be doing something that he actually doesn't really know well enough to attempt.  hehe My luck... I went to the grocery store after dropping the kids at school.  Before we left the house it had poured enough to flood the road, but by the time we got to the school it was bright & beautiful!  Until I got out of the store.  It was drizzling a bit as I put my few things in the trunk, but as soon as I got under the overhang to return the cart the sky let loose!!!  Running back to my van I looked like a drowned cat.
The afternoon was interesting.  We had a 3:30 rheumatologist appointment today.  I know that know matter what time they say the appointment will be we are in for the long haul.  We got there at 3:10.  We were finally seen at 5:15.  They close at 5.  I expect this, so it doesn't really bother me the way that it should.  Mostly because I love the doctor & his 2 nurses.  The 3 of them are awesome, except that the doctor never returns calls.  I can call, leave several messages, email the nurses, and maybe a week later he'll call back.  Maybe.  Anyway, I had a long list of questions to ask, like do I need to get paperwork from them first for social security & a disabled parking permit?  I had questions about medicines, and symptoms.  I was warm in their waiting room wearing shorts & a T-shirt.  My child was wearing jeans, an undershirt, a long sleeved shirt, a jacket & mittens.  "Houston?  We have a problem."   She also pointed out 2 symmetrical bumps on her elbows.  He never really did answer her about those except to say baking soda.  Ok.  I pointed out that the Raynaud's is getting worse, there's an episode a day & drills at school for it, her hands are very swollen, her knees are still puffy, & she doesn't really complain so if there's more I dunno.  So, he wants us to switch her back from Methotrexate pills to MTX injections, which is what we were doing before we started the Enbrel.  He seems to think that the Enbrel has stopped responding.  I hate to say it but I think he's correct.   However, because it is not so simple to just move on to something else we are trying a new approach.  When we started the Enbrel in November 2008 we started at .4 on the needle.  After a while we went up to .5.  With her last flare we went up to .7, but you really couldn't tell.  He wants to try giving her a full vial twice a week instead, and if that doesn't do what we want it to  we will be moving on to infusions.  I have been afraid of infusions mostly because I have heard of kids being at the hospital for like 8 hours, but he said we would start on Orencia, which is only about a half hour infusion.  Enbrel is a T-cell blocker, but Orencia starts working before the T-cells.  I have mixed feelings about this for many reasons.  The biggest reason, of course, is that I'm really pissed off that MY sweet, innocent, precious little bean has to go through all of this crap.  Yeah, yeah, I know that life isn't fair, but at 8 isn't it supposed to be about like Barbie dolls and junk food???  Kids simply shouldn't have to worry about not being able to participate in PE because they're having a bad wrist day, or a bad leg day.  Kids shouldn't have to worry about not being able to walk in the morning.   It makes me angry that things may be going along just fine for a while, and then out of nowhere 'oops!  sorry... time for a major flare'.  Just when I think that we have a good handle on this something happens to make me feel totally ignorant & powerless.  I have read everything that I can on her conditions, I can have very meaningful conversations with her doctors, I can decipher her lab results (thanx to the power of the internet!).  And yet there are days where I panic because I just don't know what to do.  I guess it will be easier maybe when she's older and she takes more of an interest in being proactive?  Right now if she had a fever of 103F and had congestion galore & I asked her how she felt she'd say "I don't know".  That drives me batty!!!  But I guess she's been sick for so much of her life that it's normal.  How messed up is that??? 
And the last thing (aside from the fleeping migraine) He thinks that she has Mixed Connective Tissue Disorder.  I had already guessed that because Raynaud's is an MCTD, and so is Scleroderma, but to hear it put that way feels more disturbing, and I'm not really sure what the long-term implications will be.   So, that's where we're at today.  Things initially hit me hard, but generally after a day or 2 I am ready to tackle anything that may be thrown at me.  I thank God for helping me to handle it all!!!  Not the news that we needed to hear this week.  If you're the praying kind, please keep us in your prayers!  Thank you!

No comments:

Post a Comment