Oh, hey, look, a really bad attempt at humor! In a nutshell, don’t ask. I’m not dead, but it’s not because this isn’t trying to take me down, and I’m not able to do anything, and it’s not because I’m not trying.

It has been exceedingly ugly. Let’s leave it at that.

However, I know a few souls have been trying to contact me, and I’ve not the brain power to write a “Contact” page or trust myself with installing a plug in presently, so should you need to write: shoe [at] linuxlibrarianREMOVEMEIBLOCKSPAM.org

Don’t expect a response too quickly. I have about a half hour a day my neck can support my head without help.  But god help me, I’m tryin’.

At the moment I really do wish a lot of things were different. I’m okay with that. Well, I’m okay with my wishing that, I’m not okay that it’s that way. I am waiting to hear if any of the labs taken on Monday were off, but I’m not overly expecting they will be (I’m not terribly sure anyone is, again, we’re more on a “baseline” approach to make sure we catch anything breaking or anything broken to try to get what we can working in spite of the fact my hypothalamus has taken up fiddling as a hobby).

Of all the crazy annoying crap, the most annoying at this point is I am always freezing  — which, if you know me, isn’t what I’m like. It’s 74 degrees in the house, I’ve got a sweatshirt on and two pairs of socks, I’m under the blankets and I’m shivering. (Because I am inevitably asked — no, no fever.) Of course, it doesn’t keep me from sweating constantly, but hey. And I get a little worried because but for Penny’s total inability to handle heat and her loud panting and uncharacteristic detachment from my leg when she’s hot, I’d not even realize it’s that warm. It’s not bad now, but in August it’s gonna be a problem if it’s 80 degrees and I’m not feeling it, because even if I’m not feeling it, I probably am. So part of me hopes they find something that explains that tendency to freeze, but I’m not thinking that it’ll be readily apparent.

Anyhoo, I think I need to lie down. Grrr.

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.

Two posts in as many days… holy cow. I am anxious to get back to posting at OStatic, but my brain is being still so dodgy. I think I have to try either today for posting tomorrow… or not care that much that it’s going to take three days to write a three hundred word, somewhat informative and not “me-centric” post. I have a hard time not caring about that, because it shouldn’t be so damned hard. But nothing that’s easy should be as damned hard as it’s been.

Part of me is more certain than ever, and relieved, that this is probably some variety of dysautonomia. Part of me doesn’t want to think that at all, because I’ve got a history of “this is it” and it isn’t. And none of the things “it” has been suspected to be are fun, but knowing what it is is something. I almost smacked the last doctor who said “Well, I’m glad it wasn’t myasthenia gravis! That would be terrible!” Right, because identifying what’s making my life (biologically, my social life has been comatose for years) hell, and finding out that it’s something miserable yet very treatable would sure be a lot worse than going on feeling miserable for no apparent reason.

But I am certain it is one of these disorders. And there’s no comfort in that, but in some way, I do feel a lot more relief than I thought I would. I mean, I knew I wasn’t making it up, I knew it wasn’t psychological. But after years of feeling like this, with really nasty stuff going on, and no one can find much of anything –  how do you not have doubts?

I was afraid this would be something that would always be unpredictable.  It seems no matter which it works out to be, that fear has been realized. I know we can get better handle on the symptoms, mainly because I don’t think it’s possible to have a much worse one than we do presently. I know avoiding stress is neither possible or desirable, and at this point, the biggest stress in my life is feeling like this, so it’s not like it’s something I can avoid.

I think there’s that crappy realization I really am never going to be able to hold a job with rigid, set hours again. Flexible hours are kicking my ass currently. I wish it weren’t like this, but at least I know why. Well, sort of.  I have to accept it, and move forward with it. But dammit, I don’t have to be happy about it or act like it’s a gift. Denial isn’t productive, and I’m sure as hell not wasting my time lying to myself.

So it’s probably somewhat apparent, but we (as in I) had some technical difficulties. Let this be a lesson to you: Don’t do WordPress upgrades when you are unable to sit up. Because then, something breaks, and then, you break it further because you can’t sit up and think and fix it correctly.

And as luck would have it, once I reinstall and wipe things down again, I figure out what the problem was. Hindsight, problems, feeling stupid — ah, the little things that make life worthwhile.

Speaking of figuring out problems and hindsight and other stupidity — we have nailed down the organ system that’s broken. Well, jeez, now, that didn’t take too long, did it? Six years? Piece of friggin’ cake.  Actually, I can’t say that. Wait, yes I can.

So here’s the deal — there is, as yet, no diagnosis. They’re going to have to do testing to try to nail down what variety of disorder it is, and perhaps, if it’s possible, figure out what’s messed it all up.  There’s also the distinct possibility it isn’t going to fit in any category, or that the root of the evil isn’t going to be apparent.

Seems there is a problem in my hypothalamus, where my autonomic nervous system lives.  I’ve got some form of dysautonomia. The autonomic nervous system is that lovely little bit that controls the function of all your involuntary organs and involuntary processes that you don’t give two figs about until they break.  Mostly your heart rate and blood pressure get screwed up, but many dysautonomias mess up other organs. Problems tend to relapse, remit,  or not always leave and come in any number of combinations. They shift, they get better, they get worse, and they don’t tend to be obvious on tests. If end results aren’t treated, they can cause damage over the long haul. They aren’t usually fatal, but you don’t want to inflict long term damage on yourself, either.

They aren’t uncommon, but they aren’t common, and they don’t always suck as badly as mine tends to like to suck. I always said it would feel like someone turned up the gravity. Ironically, that’s kind of accurate. Standing causes blood pooling, and blood pooling makes your head heavy. They are hard to catch because doctors tend to think patients with transient stuff going on are nutjobs. No way.

By and large, they aren’t the easiest things to manage, but they can be managed.  I don’t expect I’ll ever feel great, but I am reasonably hopeful that I can feel better. I hope so. This is now incredibly old.