I Owe Ya One.

I suppose, anyway, I ought to update. While Meclizine helps some with refresh-rate related vertigo, and I can generally get a little bit done before the wrists start screaming with typing, it’s pretty limited — and as always, the constant part of my little issue here is that it’s completely random.

Mostly. While I wish I didn’t have to drink huge amounts of water to keep from losing my vision and passing out, I do — and I realize now that if I drink something right when the vague almost indetectable uncomfortable stuff starts, I feel better for a longer haul during the day and generally the stuff that I can do becomes a little easier and more successful. The bad news is, that keeps me tethered to a water supply and latrine. I mean, I have a drink in my hand, or I am in the girl’s room (well, okay, I don’t get out much, and the bathroom in the house is pretty gender neutral). It’s not a good arrangement on a few levels, I am very well aware.  But if no one is taking action on fixing this crap, I’m going to sit here and feel okay if I have to sit here and have any choice in the matter. I have a doctor’s appointment this afternoon. I’m not going all Denzel in John Q. or anything, but demands, I has dem. Like… there’s a lot of trial and error in treating this stuff. But we neither have trials nor errors if we don’t actually do something. So get moving. I do not expect a miracle, and I’m very well aware there may not even be any real success in treating anything more than we have. But I expect that the medical profession should meet me at least a quarter of the way, and at least make a freakin’ effort.

The tolerance level for lazy and fear of failure is low to the point of non-existence. The tolerance level for failed, honest to god attempts and experiments that didn’t quite work as hoped is, however, through the roof. It might not get better, fine (I think it can, though), but that’s going to be easier to deal with if we actually take a shot at any viable options.

All right, and I’m out for now. Wrist and refresh critical capacity reached, and I need to recycle this bottle and visit my friend from Tidy Bowl.

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It's Like A Whirlpool and It Never Ends…

Right, so I do think there is some sort of upswing going on here for a bit, and that’s a good thing. It’s letting me do a little more at OStatic than I’ve been, and I even managed to keep my commitment (which I would have been really bummed not to) as an essayist on LISNews’ Summer Series. So there’s this upswing, and there’s all these stupid catches involved that in some ways make it slightly more comfortable to exist and a lot more frustrating.

Meclizine HCL does a great job keeping the vertigo to a manageable level. I need to limit screen time, but I can at least get stuff done. Well, most of the time. Because I can type and move my hands a bit more, those large lumps I discovered on them a month or so ago — which didn’t seem overtly painful — became so. All right, and me and pain — we have a hard time recognizing each other. We do. I think I scare it, so in very few circumstances does it take hold, and it’s those circumstances that it knows I can’t ignore it, it knows my acknowledgement is guaranteed and gives it life (oddly enough, this also powers closet monsters). So it tends to be fleeting. It keeps me from doing stuff, but it is fleeting.

One bump is a cyst. I believe that, I know what got it going. The others, symmetrical, located in the same two places on my left and right hand, they say, are arthritis. Once I got a picture of how hand bones work, right, makes sense. There’s not much we can do about it, they say. Tylenol — well, no, I take Percocet (though I won’t be for long. It’s a useless pain killer and since it seems to only, incongruously, make me alert — which I appreciate — but it shouldn’t. If I’m going to be treated like a drug addict by doctors who don’t know my case, and get apologetically carded by the pharmacy staff — who have known me (sadly) for years — it’s going to be for the Ritalin/Concerta ER, which has the same alert effect, is supposed to, and my sleep doctor has said there is probably a little room for upward adjustment. And then I can take stuff that works for pain — like ibuprofen or naproxsyn).

My concern is this — I’m 36, which, okay, fine, I could be getting osteoarthritis at that age, it’s also in my lumbar spine because of some falling off horse directly on ass injuries in my youth — but the likelihood of it being symmetrical when I am most definitely not ambidexterous, occurring at the exact same point in time, and the large spaces in my knuckles they felt as well gives pause to wonder. I know weirder things have happened and it could be osteoarthritis. I also have this nagging quote from Dr. G (not the medical examiner, I’d like to avoid her for a while) that it’s far less likely to be something completely unusual as it is to be something fairly common presenting in a completely unexpected way — and I probably, by this point, have a few different things going on. Law of averages.

Given a family history of a close blood relative with neurological issues and completely normal ANA titres, who developed a rash that was biopsied and found to have lupus — though the purely neurological symptoms are the ones that are kicking her ass, I have this niggling concern that perhaps it’s not osteoarthritis. And that would be a fairly significant change in treatment from extra strength Tylenol.

The neurological issues are the worst, of course. And when told they only concern themselves with cyst removal if interferes with daily activity (the cyst doesn’t hurt, the other ones do) I kinda didn’t know where to start. First, we’re assuming I have anything ever that I can rely on doing on a daily basis. My daily activities consist of getting up, not knowing what the hell it was I meant to do, sitting down, remembering… Being tired, drinking water, taking a trip to the latrine.

The dehydration/drinking oceans has been a problem. Of course, I don’t think weaning down to reset is going to do much. It’s also pretty self evident. I’ve tried, because it’s a pain in the ass, and it’s disturbing. And when the pain doubles you over so you can’t stand up, and you start to get darkness around your visual field — which happens after about two hours, day or night, without water — there’s not a lot you can do. I know that’s something that can be adjusted. At least, they can do it with things like central diabetes insipidus. It’s worth a shot. There’s way too many places I can’t bring water and that have manky bathrooms I might want to visit some day.

And there’s been some fun migraines, again, that I can do nothing for thanks to the Percocet. I had a fun one, lasted about six to eight hours, and I could’ve knocked it on its ass with Alleve. I can’t wait till that crap is officially gone.  I really am not expecting miracles, but I am so sick of the band aids that get in the way of treating things, and what feels more like an excuse: “Medicine can’t fix everything.” I never expected or asked for that. I know that. But sometimes I’m wondering if it’s an all or nothing scenario with it — what medicine can’t fix, it doesn’t try real hard to make much better.

I feel bad saying that. A lot of people, again, were suddenly dropped into the mess that’s my medical history. But y’know, right now, I have nothing but this history and the (oddly persistent) hope that someone will make a move to try a little more soon. And it’s been this way a long time. A long time.  Maybe my self worth is over inflated, but you know what? My time is worth a whole hell of a lot. And once things are settled, someone is getting a big freakin’ bill for what’s been wasted.

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All Right, Deep Breath

I am tentatively venturing the statement that things are slightly on an upswing. This of course leads to the inevitable feeling of relief mixed with the knowledge that things will roll in again, because they haven’t all entirely rolled out — I always have a few “souvenir” symptoms left with me.

There’s also the feeling that I want to cram all the things I can do into the next five seconds, because who the hell knows if I’ll be able to do anything in ten.

We are still waiting on the hospital and the insurance to stop blaming each other when it comes to a hospital stay, but most doctors and specialists consulted — from general internists, to neurologists, to nephrologists — are all certain it is an autonomic nervous system dysfunction, more on the order of Parkinson’s or (hopefully, we’ll find) a less unfriendly Guillain-Barre or Shy-Drager than a postural orthostatic tachycardia syndrome or vasovagal syncope. So anything done in terms of baseline diagnostics won’t be really diagnostic, it’s just going to be informational. And I’m starting to wonder how much I care about baseline information if it’s going to take forever and I’m going to be stuck in a hospital, very capable Dorktor aside, that’s so thick as to not grasp the idea that I am taking stuff as prescribed, and the hospitalization is to see what breaks worse in a controlled environment, not to keep me away from medication. Believe me, if I could, I’d run from that crap as fast as I could. In short, I’m uncertain whether one or two Dorktors full of win can cancel out a whole hospital full of doofuses.

And there are a few priorities to what needs fixing. I’d like my brain to be sharp and alert and awake, and I’d also like to be able to go more than a half hour without drinking water before I start to feel dehydrated. And I’d like to stop having to pee that much. The constant peeing — I have half considered suggesting an enlarged prostate to certain health care workers it was mentioned to, to see if they, um, got it (I have to wonder at this point) — is what causes the dehydration and drinking. It’s also a real pain, because if I am able to go out, I need to go somewhere where I can bring/get/and keep with me a bottle of water. And while I am not at all a germaphobe, there are limits to what I will accept when it comes to public restrooms, if you know what I mean.

In the meantime, I am kind of trying to cram it all in before the buzzer sounds again. Whenever that may be.

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What's That Light? Is That a Neuron Sparking?

It’s not an oncoming train, I know, cause I can’t get to the tracks. Actually, all things considered (and the day isn’t over yet), today hasn’t been the horror that I’ve come to know all too well recently. I mean, there was a high level of ambient background suck, and some periods of intense suck, but the ambient suck was longer than usual and the intense suck shorter, and you know… Sucking sucks, but you still learn to adjust or else you just run around sounding like a drooling idiot.

Oh, crud.

We are still trying to work out what the hell is going on that the hospital thinks I’m just dandy, despite what my doctors say… And the insurance company is sort of thinking that the stay would be covered even if we didn’t have to write in the “going off meds” part, as long as my doctors think it’s medically necessary. They do, of course, but the hospital insurance drones (see Dumbass lady, below) either assumed it wasn’t okay from the get-go, or didn’t actually listen and correctly relay the doctor’s intentions to our insurance, hence the confusion we are now knee deep within.

I’ve been having some wicked issues with screens that have certain frequency refresh rates… Mainly computer monitors, and televisions.  They cause some wicked vertigo, which, after being prescribed some uber-Dramamine stuff, I’ve found has probably been part of my ambient background level of suck for quite some time.  It helps, but I have to be quickish on the computer and watching television. Fortunately, I guess, by and large, television sucks. Does get in the way of doing the online deal, though, which is a definite bummer.

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Because I Am Sure You Were Wondering (or I Flatter Myself)

In a nutshell, things have been sucking mightily. As in, sitting here, writing this, causes a certain degree of discomfort thanks to the glow of the LCD and the blinking of the cursor and the scrolling of the mouse tend to cause vertigo (as does driving in the car — yes, as a passenger — and nodding or shaking my head, and laughing really really hard, which, surprisingly, I still do quite often).

The kind doctor, formerly known as Dorktor, but for now we’ll call him Dr. G (yes, he’s a guy, so no, he’s not that Dr. G. Although I wish she still worked on live people, she’s really cool) had to stop office hours for the next year or so thanks to some crazy ass labor laws that say physicians who teach can’t make their students work all hours and so… Well, anyway, he’s teaching, and doing rounds at a local hospital whose name I will mention because I’m bullshit at the administration right now there — the Whidden Memorial. I am in touch with him, and I had a student of his who is at the local office assigned to me — Dr. R — that he personally picked for this purpose. He said to her, to me, and to the rest of the staff at the office there, “My hands will be involved in this one, because no parties involved here deserve to go this alone.” Can I tell you that Dr. G is seriously the epitome of what a doctor ought to be?

I’m not sure why he picked Dr. R, but I like her. She’s about fifteen years old. The attending that stepped in to our appointment yesterday was about 24 years old.  For the record, that makes the attending exactly 162 years younger than I am at the moment.

Here’s the deal: Dr. G thought (and we agreed) that in order to get a clear picture, I need to go off all the stuff I’m on. Ritalin, Concerta (my sleep doctor’s instructions for weaning off those — when you get up in the morning, don’t take them. Don’t take any other doses of them during the day. Next day, repeat. There’s no rebound/withdrawal as I’ve taken as directed, and I’ll just return to my normal crappy state), propranolol (which scares me most)… I have to stop them just in case they’re masking stuff, or screwing with tests, or whatever. I don’t want to do this in an outpatient setting — I’m kind of a risk at home right now in terms of falling over and doing stupid stuff without thinking.

So let’s do an inpatient, sooner rather than later. It’s set up before Dr. G goes on vacation last Friday, I’m to get admitted to the Whidden, and if they take me off my stuff and I get worse in 24 hours (which we all had no doubt would happen in 3 or 4 hours), insurance would pay for my stay and we could blitzkreig the testing, adjust stuff accordingly, and send me home.

Friday night, all set. Dr. R will call with details on Monday — what to bring to my appointment where I’ll be admitted.

Yeah, well.

Apparently all the administrators at the hospital stopped listening at “remove prescribed meds,” assumed I was abusing them, and denied my stay… Probably as soon as they thought Dr. G reached his vacation destination and was unreachable by phone, email, or page.  Said I should go to a rehab center. Ahem. Dr. R respectfully asked why they thought someone who was taking things as prescribed should go to a place where people at best haven’t taken things as prescribed or are taking street drugs and the only monitoring I’ll get is two blood pressure readings and one temperature measurement a day. And how would I get any follow up diagnostic tests?

We can do them on an outpatient basis, says hospital. Oh really? I can’t get my legs over the sides of the motherloving tub half the time after a shower.  I haven’t seen the second floor or basement of this house in seven months. I am not doing tests scheduled on the fly for the next five months.

So a lovely ex-nurse-turned-hack who we’ll call Dumbo calls to tell me that my insurance isn’t covering the stay. I could go to a detox center. No, I can’t, Dumbo.  I asked why it was all set when Dr. G left on Friday, and on Monday morning it isn’t?

Dr. G apparently had lots of “wishful thinking.” No, Dumbo. I said, “It seems more like I have a doctor who really wants to get things resolved, and the hospital management thinks it knows better.”

Dumbo says, “Oh, now, don’t even go there [no lie, she did]. That’s completely anecdotal.”

Right, because every person you call says it to you, but it’s never happened to you directly. For me, it’s been the all too real story of my life. To you it’s anecdotal.

But really, that’s when some sobbing but a lot more swearing started.  I told Dumbo at first my frustration was not directed at her. By the time I handed the phone to Mr. Shoe, it was totally directed at her.

It turns out, yes, Dr. G was correct in what he told me. He was not thinking wishfully. He knows I will be worse in 24 hours, and my insurance will in fact cover that. Dumbo, however, and her ilk took it upon themselves, having never seen me, to think that no one would get worse from the drugs they were obviously abusing in a 24 hour period so it would be useless and — the kicker — I’d be stuck with a co-pay.

I believe my words were: “Look, lady, I don’t give a flying fuck about the co-pay. $35 is the least of my worries right now, get it?”

She asked if I had seen a psychiatrist. She asked his name. She said, “Oh, I know him. What does he think?”

I told her what he’s told me every time they send me to him, “I wish the rest of the medical profession would get it together and not assume that the first test result that doesn’t pan out like they’d imagined means the patient is mentally ill.” (He also said most neurologists are just crazy assholes. Psychiatrists get a bum rap — it’s the neurologists who are absolutely off their gourds).

Meanwhile, because no one has produced a magic, easy diagnosis in six years, she attempted to do so, naturally, in a fifteen minute phone call. Look, lady, you are calling to tell me you aren’t going to help me. It’s not my doctor’s fault, and as far as I can tell, not my insurance company’s fault — it’s you thinking you know more about medicine and my case in particular than my physician.

And for any Dumbo hospital administrators out there — for the love of god, please do not ever, ever ask someone who has been through six years of this bullshit maze of miscommunication, run around, and in general being a very ill, totally incapacitated hot potato of a patient, “Do you ever watch those mystery illness shows on TV?” when you are calling to tell them you really don’t give a shit that they’re ill and need help (and after implying in several instances they’re abusing drugs).

It’s just plain insulting. Especially when most people get an answer on those shows once they’re rushed to the hospital and it’s unclear if they’re going to live, and finally someone steps up to the plate and figures it out. Dr. G and Dr. R are trying to avoid that. You, my dear Dumbo, are just making it an inevitability.

I expect I will be admitted eventually, as does Dr. R. I am thinking it might be because Dr. G will come back, find out what happened, and the current hospital administration will get an earful. And Dr. R is more than willing to reason with our insurance company — that I am still not entirely convinced is the issue at all.

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Been Lax, Wish I Could Be Ex-Lax

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’.

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Lest I Forget How to Spell… I'll Write

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.

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The Answer — Anti-Climactic, and Not At All Bittersweet

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.

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Waiting, Without a Holding Pattern

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.

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Danger, Zombies Ahead.

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.

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