2:07pm July 26, 2014

I hate this.

Medicare (and possibly also Medicaid, but I think it’s mostly Medicare) is messing with my meds.  Constantly.

I have a bunch of different meds where I have a regularly scheduled dose and then a PRN dose.  

First they wanted those to be separate prescriptions or they wouldn’t fill them.  One script for the regularly scheduled dose, another script for the PRN dose.

Now they are insisting they have to be both written as one prescription (for a variable dose) or they won’t fill them.  And now they’ve said that even though my PRN formulation of one med is different from my regularly scheduled formulation of the same med, they refuse to fill my regularly scheduled formulation because I still have a tiny bit of the PRN one left.  So I’m literally weaning myself off of this stuff, very rapidly, because I know that the way they count the amount I’m using, and the amount I actually have, seem to be from two different planets, even though I’m using less of it than I’m prescribed.

This means that there are meds that I am going on and off of practically at random because Medicare are bureaucratic assholes.

And this is making my body feel completely lousy, it’s messing up my sleep, it’s messing up everything.  I hurt everywhere, and it’s not even pain-related meds they’re messing with.  (It’s Benadryl, lorazepam, and dexamethasone, mostly.  We’ve managed to get the dexamethasone just in the nick of time several times in a row now, only because I’d die without it and even Medicare has to admit that.  But going on and off of Benadryl and lorazepam rapidly, or having wildly varying doses, is no picnic either.  And it seems to set off my neuropathic pain something awful.  And headaches.)

Also my physical therapist discovered something nobody else has ever mentioned to me, which is that my head tilts to the right all the time, and this may be making my neck problems worse.  I’m supposed to do exercises to strengthen the other side of my neck so it will straighten.  And I’m supposed to try to sit with it straight.  But it’s like… every time I move my head to the left… the moment my attention wanders, it’s dropped to the right and gone very painful.  This isn’t as bad as when I woke up and couldn’t move my head at all, it’s just a tendency for my head to fall in that direction.

When I went to get my EMG, my head had fallen very far to the right and I couldn’t keep it upright for more than seconds at a time.  But then I wasn’t on Mestinon at the time, and it’s now quite well established that I need the Mestinon for a reason.  

I’m really glad I got the EMG done.  I had wondered why I was bothering, because I’d had a different type of EMG done that turned up normal.  But we were just discussing whether or not it would be good to just take me off Mestinon since the problems I was having seemed explainable through adrenal insufficiency.  …and then right as we were about to discuss dropping the Mestinon, I turn out to have an abnormal EMG.  So… yeah.

My neck hurts.  My entire body hurts.  The back of my head hurts.  And the entire room is flashing.  I want to sleep and keep sort of halfway falling asleep, but can’t seem to sleep for real.  I did sleep some last night, for a couple of two-hour periods, but I’m definitely much further back into irregular sleep-wake pattern territory with my bedtime med dosages screwed up this badly.

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