So, what was THAT all about? And by THAT I mean the purple cow udder on my face photo. That was a sinus surgery which had to be aborted due to excessive bleeding—the glove was packed with ice. I was packed with morphine.
Tomorrow I’m headed to the Autonomic Disorders Clinic at Stanford where, hopefully, a doctor will finally see the emerging patterns I’ve been seeing and put all this together, run the right tests, blah, blah…I’m so sick of this I could poke my own eye out with this thermometer.
In case you guys want to understand more about this very unfunny, but definitely, wacky "Let's go careening right off the cliff!" turn my life has taken, just click the link to the clinic, 1 of 150 in the US.
One glance at the nefarious list of disorders on the link makes it easier to understand that gee, it seems like everything is wrong with her because everything IS wrong me. Think about how frustrating and difficult tit can be to diagnose when something goes wrong with a complex electrical system. Often, it makes you just give up and buy all new equipment.
To give you some idea of my new normal--body temp 96.3, often falling to a cuddly 95.2. My heart rate drops to 60 often, which would be impressive if I was a meditating Tibetan monk.
Half the time my vision is too blurry to read so I’ve been devouring audiobooks. I’m so light and sound sensitive that sometimes TV is too much. So, thank the gods for audible.com, my new favorite thing. I can’t sleep because of varied unrelenting miseries so I lie in the dark and listen for hours and hours and finally fall asleep for a while and then wake and rewind to where I drifted off and listen for hours and hours and then wake and rewind in what feels like a never-ending fever-dream, without the fever part.
I have episodes of intractable “hyperalgesic” pain which does not go well in general and quite horribly when one adds surgery or B27SpA to the mix. If they were constant instead of episodic, the Caltrain Bullet Train #393 would be wearing me like a scarf today.
My skin is a poster of livedo reticularis; my eyes are raccoon-like, dark and sunken back. I’ve got dysphagia that was mild at first but it’s getting harder to eat so maybe I'll finally lose some of the flab I've gained doing nothing but lounging around like the Queen of Nowhere Anyone Would Want To Live.
Three days ago I finally "broke" and spent all day sobbing and trying not to do more sobbing. It hurt too much to cry, as in it literally increased my pain, so I have wisely chosen to not do that any more.
It hurts too much to have a proper meltdown. Now that, dear reader, is some unduly harsh shit by any measuring stick.
Maybe now you understand why I quit writing. This is my whole fucking life now. Oh, except for the trying to figure out how to do things like cash out annuities that were supposed to be for my retirement. But as the Brits say Needs must, motherfuckers.
Yours With Regal Regards,