THIS IS MY STORY . . .

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Apr 17, 2014

Wonderful news! 🙂  My appointment with the mitochondrial disease specialist at UCSD Medical Center is set in stone for June 17th!  My parents, sis, and I will be there at least a week since the muscle biopsy is scheduled for Friday, June 20th as well.  And after I see the dr. that Tuesday, we’ll know more then if he will order any additional tests, etc.

this is what the hospital looks like!
*2 MORE MONTHS*
🙂
Yesterday, I had physical therapy and also saw my pain dr.  The CRPS pain in my feet has still been really bad.  And this past Friday, my pinky finger and side of my right hand (my good hand!) accidentally got cut, and now the CRPS has been flaring up in that area. :/  That’s how bad this pain syndrome is—the smallest cut can set a limb “on fire.”  So Dr. S is changing one of my meds and switching it to a stronger one.  He also ordered some labs—one is to check my lactic acid level (at the request of the mito specialist in San Diego).  The last time I had it checked a year ago, the results were elevated..
This coming Tuesday, I have appointments with GI and Nutrition.  Unfortunately, the new medication I started a couple weeks ago hasn’t been helping, and I still can’t eat much.  I’m steadily losing more weight. 🙁

P.S. Please continue to keep Justina Pelletier and her family in your prayers.  Her health is getting worse by the week, she’s losing her hair, and she’s swollen all over.  This is a great article (written just today) by someone from MitoAction about the difference between medical child abuse and mitochondrial disease: http://www.mitoaction.org/blog/why-mitochondrial-disease-looks-nothing-medical-child-abuse  It also includes an update on Justina.  If you can’t finish the whole article, read paragraphs 3 and 4.  We need to get her home!

Post written byKerissa

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