Thursday, September 16, 2010

So far, so good

I think it was in May when Em's rheumy had said "Maybe the Enbrel isn't doing all that it should be.  Let's max the dose and see what happens, but since that probably won't work, why don't you consider Orencia."  So, I did.  I talked to people.  I talked to Orencia reps at the JA Conference, I asked other people, I researched and read up.  That said, I fully expected this to take 3-4 months to kick in, at least.   I panicked a bit.  Knowing how bad her Raynaud's is in the summer, I was terrified to think of how it may be in the winter with a med that wasn't working well, or working yet.  Somehow, (she says with lots of prayers and fingers crossed) it seems that the Orencia is already working.  Emily came home yesterday RUNNING and telling me, "Mom!  Guess what?  The Orencia is actually working!"   I know that it could be a fluke, I know that it may not last;  I'm not getting my hopes up, BUT she didn't ask for a bath yesterday or today, and that's her biggest coping-mechanism right there.  On a bad day, if she could I think she'd spend all day in the bath.  It is huge to me that she's feeling this good!  Her endurance is still horrid, but we're working on that.  I'm just so relieved.  She was so angry at me for agreeing to an IV med.  She was so terrified.  I tried to explain to her that sometimes the right decision is the hardest to make, that I was certain this was the best choice that we could make right now.  It's wonderful when she sees that I'm right, that I am not making her be a pin cushion for no reason.  Kids this young should not have these issues!!!!!  Now I just need to find her a therapist.  As I've been saying a lot on here lately, she just shuts down.  When we started talking about Orencia in the doctor's office, on the tour of the Infusion Room, when we actually went for her infusion, and in math class a few times she's shut down.  I'm talking run away, hide in a corner, won't look at you, won't talk, won't listen, chewing on her fist type of shutting down.  I'm sure it's probably mostly arthritis-related anxiety.

I have to explain something before I get into how I feel about this.  I'm a Christian in the "it's God's job to judge, and my job to love" sort of way.  If you want to be Bhuddist, that's your choice.  I may not agree with your choice, but I don't think it makes you a bad person.  I may feel sad about that, but I'm not going to tell you.  I don't believe that shouting in your face will help, either.  I try to lead by example.  I'm not always the best example, but I try.  We're all messed up & broken.  I accept that, and I'm glad that I'm not the only one!  : )  Before Em's diagnosis we all made a lot of mistakes.  Looking back, I can't believe how depressed I was.  I can't believe that I got through it with only God as my counselor!  No therapy, no meds- just church and changing my outlook.  It took some time, of course.  But, I look back to 2007- 2008 when EVERYTHING was going wrong.  That's the time period where first Kevin got pnemonia, then the little people got it.  Kevin was out of work for 2 months.  I didn't even know Em was sick- she had a really shallow, dry cough but that was it.  I took Zach in to the pedi for his cough, but I had Em seen because they always got sick in pairs.  Well, the pnemonia congestion hung out in her sinus cavities leaving her a shallow cough for months. Then the nodules started popping up.  The limp started then, too, making her slower than anyone that I knew.  We had x-rays on her hands, & her hips to her feet.  All were clear.  Her liver enzymes her elevated for months, her white count all screwy, her kidney enzymes were messed up, too.  She failed a hearing test, and was also diagnosed with a mild form of autism called Pervasive Development Disorder.  She had her adenoids removed, and then she was diagnosed with JRA.  Since she had tested RF+ at her pedi's we knew pretty much that it was JRA months before she finally saw her rheumy.  Not to mention the color draining out of her hands & feet and then turning purple.  That was a highlight.  In the middle of all that we had found mold in the wall that connects the kitchen & bathroom so we yanked those out and remodeled both rooms- with only each other & Kevin's cousin Chris.  (Thank GOD for Chris!!!  We'd still be working on it.)

I look back at the stress, how I felt like I was losing it, how I yelled a lot and got sarchastic a lot.  (Ok, I'm still sarchastic.  But only because it's fun!)  Her journey has changed us all for the better.  Back then if someone told me that I would be doing all that I am now I would have laughed in their face.  I cannot believe the person that arthritis & God are making me!  Never did I think that I would be discussing legislation with my congressman in my free time.  Or helping people through what we went through, and are still going through.  It's really cool the ways in which we're used.  It makes me happy to be able to give people hope, there's good stuff down the road- just wait for it!  Yes, I still cry for my girl.  It is so wrong that our kids have to deal with these issues- most likely for life.  I cry for her on her bad days, and when she's her bravest.  We talk a lot about how bravery doesn't mean you're not scared.  But I love them harder.  I am blessed enough to be able to prove to my kids often that I will fight to the ends of the Earth for them, to teach them how to advocate for themselves.  We show them daily that we want to be part of their lives, and we treat them with respect.  They are, after all, people.  They deserve it.  Yeah, every once in a while I still have to raise my voice.  But most of the time it isn't necessary.  It plain sucks that she has to have something like JA, but when it comes with so many blessings, at least there's hope.  I know I have some weird issues... I hate leaving my house, except to go to work.  Even when I'm excited about going somewhere, when the time comes to leave... I often just can't do it.  I find myself rationalizing it, but there really isn't a rational reason.  Anyway, I'm rambling tonight.  I apologize.  I still have this darn cold/throat thing.  I shall return! 

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