Tuesday, June 11, 2013

PDX :)

My pastor has been teaching through the book of Hebrews in the Bible...and let me tell you, it has been such a wonderful sermon series full of encouragement and hope!  I feel like that book was written just for me. :)  On Sunday, he shared an acronym he made up to give us a better understanding of why we go through suffering.  (An abbreviation for our Portland airport is: PDX.)

We go through hardships in life to
Purify
and
Develop
us,
so that we can become
eXcellent.

I just wanted to share with you that bit of a gem! :)  It's simple but full of truth!  I hope it encourages you!

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I recently started this new medication for my headaches, and I realized that I haven't had nystagmus in a while! :)  Maybe that's because there's somehow a connection between headaches and nystagmus....or maybe it's because I've been sleeping a lot lately.  But whatever the cause, I sure am thankful that terrible symptom has lessened!  In a couple of weeks, my pain dr. has to check my liver enzymes as this certain medication can cause an elevation in the transaminases..

My wheelchair fitting last Wednesday went great!  It's going to be an ultralight rigid frame...and guess what my color's going to be?  Acid green metallic. ;)  I'm hoping it won't be super bright, but I do want it to show up more than a darker color.  Sadly, the chair won't be ready for another 4-5 weeks...

My neurologist called this morning with the autonomic test results..  They're normal!  I had a hard time understanding why they're normal (as I clearly have autonomic symptoms, but maybe they fluctuate), so I emailed her, and she just got back. :)   She said the autonomic tests that I had done only test some autonomic functions and are not 100% sensitive.  She went on to say that it is, in general, extremely difficult to diagnose and treat autonomic nervous system disorders... Now I wonder what percentage of patients have "abnormal" results..

Still waiting on the mtDNA blood work...it's likely going to take 2 more weeks to be completed.  And, the doctors at Doernbecher's metabolic clinic are currently reviewing my case before I can make an appointment.

Still lots of waiting to do!!

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