THIS IS MY STORY . . .

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Jan 29, 2014

This recent article makes me happy. :]  It’s pretty much the only happy news in this post. lol

http://dailyparent.com/articles/the-nations-top-five-pediatric-hospitals/

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I saw my GI specialist on Monday.  As of now, I don’t have to alter my medications for all the GI stuff, but I’ll follow up with Dr. P again in 3 months or so.

Thursday I have a return appointment/x-rays with my spine dr. to check up on my cervical spine instability from the EDS..  Every time I get a new set of x-rays, there’s been a slow increase in vertebral slippage, so we’ll see how it is now.. :/

Trying not to stress or grow discouraged about it, but starting last week, I’ve been losing my grip in my right hand. 🙁  *sigh*  Seriously, something new always comes up every 2-3 months!  It’s hard to explain, but this seems more than just weakness.  For example, I was holding my phone in my right hand the other day, and I suddenly dropped it on our hardwood floor because my grip didn’t stay.  Another time last week, my mom trimmed my bangs, and I held newspaper underneath to catch the cut hair.  My right hand grip of the paper suddenly let go.  It’s as if my brain is not sending signals to my hand…  My neurologist is usually booked out months in advance, but by God’s grace, she has an opening two weeks from today.

I hate that my case is always so complicated. :[  I’ve never had something as simple as a broken bone….I don’t have a common disease like arthritis or diabetes or heartburn.  Instead I have disorders people have never heard of—all my genetic mutations are associated with diseases like distal hereditary motor neuropathy, central core disease, charcot-marie-tooth disease, minicore myopathy, malignant hyperthermia, mitochondrial disease, and many others.  What makes things worse is that they’re all similar in nature.  And THAT’S why I’m a hard case for my doctors.

And IF this new symptom is related to distal hereditary motor neuropathy (a motor disease of the spinal cord) or the like, pray that I won’t go crazy from all these countless diagnoses.  Serious!

“It seems like there’s so much to hope for
So many dreams I wish they all could come true
But when I think about Your ways, Lord
It gives me so much faith in all that You do

Faith to see beyond what I can see
Faith to know that You will do great things
I will trust You, Lord, I’ll always believe
As I hold onto my faith,
Jesus, You are holding onto me”
~partial lyrics from one of my favorite songs
Post written byKerissa

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