This sudden and alarming loss of strength and control of my limbs, and even unsteady gait, combined with extreme discomfort in my neck and sometimes lower back, has me wondering what the next step might truly be.
I devoted all of today in researching what I have, and to my great surprise I emerged from the rabbit hole with a rabbit.
The rabbit has a name: Ehlos-Danlos syndrome, or EDS. I arrived at this by filling out some standard forms that rheumatologists utilize, and found myself right in there amongst ’em.
This explains the extreme paper thin skin that tears if you use any kind of tape, Tegaderm, anything. It tears off in sheets, splitting just at the level where the pain nerves are, and the wounds take weeks to months to heal, leaving horrid scars. I have several scars from blood draw needle sticks that make me look like an effin junkie.
Speaking of which, I would fail terribly at being a junkie, because my veins have become fragile, like my skin. IVs last minutes, if the nurse can even find a likely looking vein.
“That one is blocked from a previous disaster,” I remark, and move my arm so that she’s not tempted to, “Well, that doesn’t matter, what YOU say. Just watch me!” Uh, no.
“That one has a valve in it (which makes them either clot or blow up)….” “Tsk!” She runs her finger along the vein, watching it collapse and fill again. OK, score one for the annoying patient!
“That one rolls terribly,” I observe. “It’s good to hold it in two places so it won’t try to get away from you:-D” humor is always good, yes?
She snorts, throws down her nitrile gloves, and stomps off muttering about sending someone else in, this is over her head. Well done.
Then there are the veins themselves. I do not know how, first of all, how vascular access could be accomplished, for purposes of surgery. And I am not at all sure of the wisdom of pushing and pulling at structures like the arteries in my spinal column, or even my jugular vein and carotid artery. I don’t want a stroke from a leaky artery or a blood clot from a stressed out vein.
So that leaves the question: am I even a surgical candidate? And if not, what can be done to keep me walking and talking and writing on this touchscreen with one finger?
As I was wrestling with my nightgown it occurred to me:
My goal is to learn my deepest essence. I like who I have turned out to be, with some notable exceptions.
And I’d like to devote time to really listening deeply, and having understanding of the spirit that was injected into this crumbling body.
If I can understand that, it will help me to manage the coming events, whatever they turn out to be.