Jun 19, 2013

Hey, everyone!

Just an update for you. 🙂  Thank you so much for your faithful prayers!  This journey just seems to be getting harder and harder, but I know I have all of you and the Lord on my side. 🙂

My left eye isn’t doing too good.  Lately, I’ve been noticing that it can’t look to the left well at all.  It feels paralyzed. 🙁  Either that, or my eye muscles got super weak over time..  My neuro-ophthalmologist is booked until the end of August, but she’s squeezing me in on July 2nd to see what’s going on.  So thankful that’s in 2 weeks and not 2 months! 🙂

I got my autonomic test results in the mail this past Friday, and the dr. who wrote the report said they’re abnormal.  I wrote in my last post that my neurologist said they’re “normal,” but I think what she meant is that I don’t have those autonomic diseases like Pure Autonomic Failure or Multiple System Atrophy.

But, on the other hand, I do have some other problems: during the tilt-table portion of the test, the dr. said my heart rate went all the way up to 175 bpm….!  That’s definitely not normal.  He also said I have orthostatic hypotension due to hypovolemia.

And, my Quantitative Sensory Function test was an abnormal study as well.  I have a large-fiber neuropathy which causes loss of joint position and vibration sense and sensory ataxia.

I recently read this verse from one of my favorite chapters in the Bible: “What then shall we say to these things?  If God is for us, who can be against us?” (Romans 8:31).  Then, at my little brother’s high school graduation (btw, GREAT job, Curtis!!  So proud of you!), we sang this worship song called “Our God.”  This is the chorus:

And if our God is for us 
Then who could ever stop us
And if our God is with us
 Then what could stand against?
And then, on Sunday at church, we sang the same song once again!!  Coincidence?  I think not. 😉  God has been speaking to my heart about this continually.  God is FOR me, so nothing (not even huge, painful canker sores in my mouth, CRPS flare-ups, no sleep, loss of eye movement, muscle weakness, nystagmus, autonomic issues, fatigue, etc.) can EVER stop me! 🙂

P.S. I’ll get the whole mitochondrial genome sequencing results possibly by next week!  I’m bracing myself…it’s probably going to be negative, so then I have to do further genetic testing and/or a muscle biopsy! :

P.P.S. I have my first cardiology appt. this Thursday!  I’m looking forward to seeing this dr. because Cincinnati Children’s recommended her and she specializes in POTS.

Have a great week, my friends!

Post written byKerissa

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