Sep 5, 2014

Hi everyone,

Thank you so much for your prayers and support!  It means a lot to me.  I am doing a little better than before. 🙂  After I wrote my previous post, I only had to go back to the ER one more time (that was a total of 3 trips to the ER and 1 urgent care visit in less than 2 weeks….).  The GI dysmotility got pretty bad, and I was in a lot of pain.  So Surgery told me to go to the ER to check for obstruction.  Thankfully, that was not the case, but the x-ray results did show that I was very backed up. :/  The doctors ordered more fluids, blood work, and IV meds, and I was able to go home with an updated medication regimen about 6 hours later!


Today, I saw my pain dr. because the CRPS burning pain has been so very severe in my hands. 🙁  I have to hold an ice pack at night because my hands over-heat and burn like crazy!  They’ve been flaring up because I had so many IVs and blood draws the last several weeks, and needles always make things worse.  My pain dr. ordered an IV lidocaine drip combined with ketamine and magnesium which will be done on Oct. 8th.  So far away because he’s booked out.. :/  Hopefully there will be a cancellation soon!

To my great sadness, Dr. S told me that he is leaving OHSU the end of October and moving to Washington to practice at the University of Washington Medical Center beginning in December.  I wasn’t expecting this at all. :'(  I’m so very sad!!  It’s not because he doesn’t like OHSU anymore…he’s been here for 18 years.  And he likes change, so he made the decision a month ago.

He told me at least he’s not moving to Cincinnati or San Diego.  Washington is just a few hours away, and I’m not completely heartbroken because I get to see him up there. 🙂  But this news is still hard…change is hard.  I’ve been seeing him at OHSU for almost 4 years!  Out of all my doctors, he’s my favorite.


The next several weeks, I have many big follow-ups with Neurology, Surgery, GI, and Internal Medicine.  So I may not be able to update much.

Also, next Friday and Saturday, my parents, sis, and I get to attend a two-day mitochondrial biology conference presented by Seattle Children’s Research Institute!!  Many mito specialists from across the US will be coming to speak to families and doctors.  I’m so excited!  The second day is a family day where you can meet other families with mito. 🙂

P.S. My etsy shop is open!  Check it out. 🙂  5% of profits will go towards MitoAction and mitochondrial disease research.  And the rest will be for all the increasing medical bills I have!

Post written byKerissa

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