Mar 23, 2014

Hello friends,

I’m sorry it’s been almost two weeks again since I last blogged.  I always have bad news to share. lol 😉  The disease process (whether it’s mito or something else) is progressing, and I’m dealing with way too many symptoms.  I look so normal, and yet I deal with all of this continually:

-Complex Regional Pain Syndrome
-External Ophthalmoplegia
-Sleep-disordered breathing/sleep apnea
-Muscle weakness/wasting
-Premature Atrial Contractions
-Postural Orthostatic Tachycardia Syndrome
-Slight Tricuspid Valve Regurgitation
-G.I. dysmotility
-Cervical spine instability
-Mild scoliosis
-Muscle spasms/cramping in right hand

THIS is the nature of mitochondrial disease.

I mentioned in my last post that I’ve been having breathing problems at night, so my sleep dr. did increase the CPAP pressure this past week.  It’s really strong, but it does help. 🙂

I’ve also been having some setbacks in physical therapy and occupational therapy.  My brain isn’t recognizing where my left foot is, and I’m having sensory/proprioception problems.  The dizziness came back again, too.  But my physical therapist is awesome, and I know he’ll do all that he can to try to help these issues.

My occupational hand therapist is wondering if the muscle spasms/cramping in my right hand is from dystonia, so he’s having his colleague take a look.

In addition to all of this, I’m experiencing bad stomach pain after eating.  And it doesn’t change with the type of food (gluten-free or not).  I really hope this isn’t delayed gastric emptying..  Last year, I had that gastric emptying scan which came back normal, but I didn’t have this symptom then..  If it’s not better within the next week or so, I’ll have to tell my GI specialist.

I’m just getting worse as each week passes, but the Lord has been so faithful.  I couldn’t do this without Him.  I know I shared this before, but one of my favorite Scripture passages from the book of Isaiah says this, “Fear not, for I have redeemed you; I have called you by name, you are mine.  When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you” (Isaiah 43:1b-2).  That’s what the Lord has been to me.  Always there. 🙂  And with His help, I know I can take on these challenges!

I will end with something that encouraged me!  Last week, a rep from Courtagen Life Sciences (where I got my DNA testing) emailed me and said he found my blog on the web! 🙂  He wanted to share it on Courtagen’s facebook page which has over 26,000 followers!  I thought that was so cool and neat!  I took a screenshot of it. 😉

Post written byKerissa

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