THIS IS MY STORY . . .

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Jan 10, 2014

The day after Christmas, I had my first speech language pathology appointment with the swallowing clinic at OHSU.  The therapist wanted me to get a FEES study (fiberoptic endoscopic evaluation of swallowing) done to take a look at my vocal cords, etc.  For the 5th time that month, I had to go through yet another tube insertion through my nose…!  Those hurt so bad. >.<  Hopefully that will be the last for a long time..

Here is a video of my vocal cords moving in real-time.  But only watch if you like that kind of medical stuff. 😉  I hope the video works…I know a few of the pictures in my last post didn’t show up!  If you do watch, that arched structure is my epiglottis, and those white-ish things are my vocal cords. lol  Pretty fascinating! 😉

This past Monday, I had my first modified barium swallow study and another esophagram.  
Tuesday I began physical therapy again—I’m now seeing a new therapist at OHSU, one who specializes in neurological/neuromuscular diseases.  Next week, Lord willing, I get to try this new contraption, sort of like a robotic leg. 😉  He wants to see if this will help me walk more easily with my left-sided weakness.  Sometime in the future, he is also going to have me try these leg braces that will hopefully make walking easier as well.  I’m excited to try both!
Yesterday, I saw an allergy/immunology dr.  For the past several years, I’ve been getting big canker sores in my mouth almost every other week. 🙁  I had a very extensive allergy test to see if any foods are the cause of them.  Thankfully, I’m not allergic to wheat, dairy, citrus, etc.  I’m so glad.  I am very allergic to all kinds of trees, grasses, molds, pollens, etc.  During the test, I developed huge hives and swelling all over my arm!  It was horrible!  I’ll spare you the gross pictures. 😉
Since food is ruled out as the cause of my canker sores, he’s now not sure what’s going on.  Maybe it’s because I have Ehlers-Danlos Syndrome and my connective tissue is not strong.. ?
Next week, I have speech therapy for my voice/swallowing issues, physical therapy, and a follow-up appointment with my physical medicine doctor!
P.S. 5 of my doctors (my spine surgeon, physical medicine doctor, GI specialist, sleep medicine dr., and even my podiatrist. lol) made Portland Monthly’s Top Doctors issue for 2014!  Almost all my other doctors made the top docs list in 2013.  I really am so blessed with such great medical care! =)
Post written byKerissa

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