Yesterday, in the most unspectacular way imaginable (with the exception of the doctor doing an impressive velociraptor impression around the exam room. I have that effect on people), I got — not a diagnosis — I got the diagnosis.
I thought that moment would be a real pisser, for lack of a better word. I thought that I’d be mad, or sad, or scared mixed with relief. It was just relief. Later I thought, “Aw, craaaaap.” Not then, though. I think the fact that I wasn’t overly outwardly sad about it freaked my velociraptor doctor out.
He explains the ins and outs and probably what’s coming (which is a whole lot more of what’s passed). And I just kinda sit there looking at him. And he said, “Um. how do you feel — I mean, that’s not good. I just told you something really not good.”
And I only partially lost it when I said, “I came to terms with the idea it wasn’t going to be pretty five years ago. Now, at least, I’m not being sent home with a line like ‘not everyone feels good every day.’ Now at least I can do something that I know is right to address it. Yes, it sucks. It already sucks, I knew that.”
So I have something without a name. Well, yeah, a lot of this stuff has no name. My autonomic nervous system is FUBARed. I believe it’s technically listed as a general autonomic nervous system dysregulation. There are things officially named that fall in this category — Parkinson’s, bazillions of different syncopes — but there are millions more that aren’t named.
The long and the short (well, the short, right now, I’m about to go down for the count) is that this is the way it is. I mean, the relapsing and remitting cycle is going to remain unpredictable and it’s going to do what it wants when it feels like it. Actually, all of it is going to do that… But at least knowing what it is should let us tackle the annoying symptoms as they re-emerge and disappear again and test various bits over time to chart the course. Is it progressive? Don’t know for sure. It’s probably slow if it is. Now comes tons of baseline tests to — well, get a baseline of things, and see if there is a cause for the disturbance (though at this point, it’s usually a done deal, even if they find something off…)
At least, now, I can know that we’re dealing with it and not missing something that’s either really manageable or is going to cause me to drop dead in twenty minutes. Knowing what it is is something — more than I thought it would be. At least I know what to be annoyed at.