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2:43am January 30, 2014

I fasted yesterday and last night, I got all the way out to the hospital, I got into the waiting room for surgeries and procedures…

And my doctor called to say he canceled the testing.

Apparently for some reason (he’s never, ever done this before) he’s flat-out insisted on being the one to test me, and would not let anyone else do it.  And he also wasn’t there at the right time to be able to do it, for some reason.  And the test is very time-sensitive as to the time of day it can take place at.  So no testing got done.

But I assume he has a damn good reason for insisting that he be the one, because he’s never insisted this, with anything, the entire eight years he’s been my doctor.

Now I’m worn out and tired to the bone.  I’m just barely getting started on my feeding.  And breathing is a little hard.  (I’m on the bipap, with oxygen.  But breathing is tiring.  Meaning the problem is largely neuromuscular.  Yes, mom, I’m on all the extra Mestinon I can safely tolerate.  My breathing will get worse if I take any more, because it makes me get more saliva and mucus and makes my dysphagia twenty times worse if I take any more than this.)

Next time they call me for testing it better damn well happen.  I don’t blame my doctor for what happened, I’m sure he had his reasons, but going out today was not consequence-free.

It’s probably worse because my lungs haven’t been great.  I mean they’re not the worst they’ve ever been, and I don’t think I’m infected or anything.  They’re just a little cruddier than usual, it’s a little physically harder to move the air, and I’ve been needing oxygen more of the time.  Sometimes that happens, it’s not a big deal, but it doesn’t make things comfortable.

But hopefully even though I’m uncomfortable, this will paszz

[Sent many hours after I wrote it, because I fell asleep.]