In Which a Whole Lotta Shakin' Goes On…

Well, in my own little mind, anyway.

I feel a little bit badly about it, but I know shortly I’m going to have to leave the doctors I am with — not because of them, but because the hospital network they are tied to is so horrendously managed that I’d actually imagine hiring in an outside consultant would help. And anyone who has ever seen a “management consultant” (or workflow, or procedural, or whatever) at work would know how it’s far more likely they’ll screw up the way things are done. But I think this health network’s management had to think and long and extra hard about how they could make this the most excruciatingly slow and cumbersome experience for doctors, patients, and insurance companies working with them.

The kicker is, the doctors are decent. I wish they’d turn the damn “doctor filters” off sometimes and trust a little bit more that I might actually have been present through the entire course of this train wreck and might have some actual, factual insight into the chronology and behavior of things that are going wacky, but a larger number there seem more likely to hear at least some of it. (And maybe that’s still a problem, but…)

There’s no way, though, that I can take the management making their jobs harder and making me jump through extra hoops simply because otherwise the paperwork is confusing for the system.  I’m already very sure that I’ve been denied certain services because the hospital network decided my insurance wouldn’t cover it — and my insurance does. It’s just that they can’t be bothered to check and send the paperwork to my insurance.

The problem is, even if the management is better elsewhere, it doesn’t mean the care is — but either way, it’s busted.  All I know is right now I’ve got a lot more confidence in my ability to determine what’s a problem now and what isn’t, and what the past can tell me about what’s on the horizon than I do in the medical profession’s ability to do so.

It’s just brutal to start over. Again. I mean, it’s brutal to try to find ways to make things work and be meaningful with another step down in functionality on my part — and it’s crucial to do so. And it’s brutal to start over with new doctors who imagine that this is a case just like all the others (an aside: I know this is complicated and not a usual situation I have going on. I am not 100% sold on the idea that this is something unnamed, unrecognized, or unmanageable in some respect. I know that this is uncommon, maybe even rare, but I refuse to believe I’m that damned special. It’s easier to believe doctors are chalking what they don’t know up to a magical status. Sorry.)

It sucks to explain it to new doctors, who’ll hit you (again) with the same tests (again) with little result (again). And then they’ll say, “Do you have any stress or anxiety?” And I roll my eyes and they say, “Well, you know what it looks like, right?”

No, I’m a frickin’ idiot. Of course it looks crazy, mainly because there’s pages upon pages of my ESR, TSH and CPK that are all lovely and normal. Sure, there’s weird bits, but since they don’t actually form a diagnosis when you pull every third consonant and first vowel out of the names the abnormal tests, we can’t figure out what it is.

But then they’ll see something and panic. Usually something that I tell them isn’t worth panicking about. Let me share that they don’t necessarily appreciate it when they say “You aren’t having a heart attack and you haven’t had a pulmonary embolism” and I say, “No shit. I could have told you that and been out of here hours ago.”

Or the lovely statement: “Well, it doesn’t look like you’re going to die any time soon!” Um, wonderful. Am I going to get a shot at living before the Reaper comes in the far future?

Any snarky answer (and boy, it’s haaaaaaard to hold back on them) and they go in to the “how important it is to make the most of every day” speech.

I KNOW. That’s what I do. I’ve been doing that for years, and I realized that probably long before many of these dorks were practicing medicine. That’s why I keep putting up with this bullshit. That’s why I haven’t lost hope. I know that if they could see, they’d probably have a hard time reasoning that sometimes the most I can make out of the day is a walk on the treadmill, a shower, and loading the dishwasher (by the way, loading the dishwasher ought to be a measure of disability — it is one thing that every last person with something chronic says is a living hell, but no one can really say why). Sometimes I can do more than that, often enough, it’s a struggle. But I do it, because I need to — and at the end of it all, however it shakes out, I can say that I always tried even if the medical profession tended to flake out on me periodically.

At this point, it’s just crappy because where ever I head next, it’ll be more of the same. I just hope in lesser amounts than I am expecting.

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Throw Em Out (or the TOYS, Eddie, We Had to Eat the TOYS!)

Because the world wasn’t completely spinning, Mr. Shoe and I struck out to the fine establishment known as Target (en français: Tarjay!) last night to pick up toys for the toy drive that the health department runs.  Here’s a tip for people shopping in the toy departments this time of year: It’s good to be obnoxious enough that people keep themselves and their overtired, overstimulated wives children away from you, but not so obnoxious that security tosses you. We did manage to achieve both these objectives.

Since re-viewing Eddie Murphy’s “Raw” video, the mere sight of a Monopoly board, Twister mat, or Slinky will set Mr. Shoe and I off.  Murphy ends his routine with his dad waxing poetic about the time when his dad only made thirteen and a half cents a week, and all they had to eat and wear was supplied by dad’s workplace. Dad worked in a toy factory. So Eddie Murphy’s dad had to eat toys, and go to school wrapped in a Twister mat.

As soon as we walk in to the store, there’s a damned Monopoly board. It was over.

We did find a really cool solar powered, eco-friendly packaged remote control car. We thought that was good and nerdy and appropriate for the health department, and didn’t need batteries. We thought it ought to be a sort of “carbon credit” for getting less appropriate toys. We couldn’t get anything that could be misconstrued as a weapon.

Dudes, these are children under the age of twelve… boxes are often very entertaining, and any damn thing can become a weapon in the right situation. A kid is just as likely to haul off and whack you with a Betsy Wetsy as dress a Nerf tommy gun in swaddling clothes and offer it a bottle. That’s probably the one saving grace of kids. Reality doesn’t need to apply to inanimate objects. Hooray!

However, I take a bit of exception to the GI Joe Stealth Suit that look a little too disturbingly like a Klan robe. Jus’ sayin.

We thought it might be a little more subtle to get the large scale racing car that was branded with Valvoline and Nicorette with our solar eco-friendly remote control smart car carbon credit, but it was more than the freakin’ cool nerdy car so we passed on it.

Mr. Shoe took them to work today so they could be checked for lead content. I think they make the people who are ready for retirement or who have the lowest seniority lick them… No. I’m bad. But he is going to be sure to warn them that the Target bag that he’s dropping them off in is not a toy.

Can’t be too careful, after all.

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I Owe Ya One

Right, so I didn’t fall off the face of the earth, but when you don’t see me online for months, it’s probably a pretty close bet that I’m hanging desperately on to the edge.

Let’s put it this way: Evidently any close up work or screens that I concentrate on real hard end up causing seasickness that the meclizine can’t take care of too well. If walking around with sea legs were where it ended, that’d be fine. But usually it ends up with a trip to visit the porcelain goddess. Let me tell you this: Every last time that happens, I have a pug glued to my leg for the next 36 hours. Penny is petrified of the thought of her mom imploding. It’s in evidence every time I sneeze.

So what’s the verdict? Well, jeez, what’s always the verdict? Not much we can do. Reacclimatize yourself, but it probably won’t be great and just remember to stop before you get ill.

I think the most troublesome thing is when I look back, I am seeing that the core bits of my problem have been here for years. Decades. And periodically, things get worse… usually after I’m run down, or get a cold or virus or some creeping crud. Then it blows up, and blows out, and leaves me with a souvenir. It’s taken decades, but now I’ve got really crappy lasting ones.

Saw a neurologist (again)… And I will give him this: For a neurologist, he wasn’t a complete sociopath. Actually, he was very personable. Not as personable as my sleep neurologist, but hey. But he said something that is indeed troubling me. First, that a lot of what has shown on tests could be explained by inflammation — like, nerves firing without reason in my chest is generally the result of a virus that inflames stuff. And if I don’t have a pituitary tumor (and since my medications don’t include things that cause it), diabetes insipidus is generally the result of brain swelling.

And by the way, he doesn’t think my problem is neurological. Cough. Now, fine, it didn’t kill me or anything, just basically pulled a Tonya Harding on my Nancy Kerrigan of a brain — but let’s say (as my physicians have agreed) that this is something that keeps flaring and remitting — shouldn’t, um, recurrent brain and spinal column inflammation be a slight cause for concern?

I’m not okay with the fact that chances are good I’m not getting back much that I’ve lost thus far, but I have to accept and deal with it. Fine. Will do. And I might be able to reclaim some of it. But dammit all,  I really would like to cut down the chances of losing more. And no one seems even willing to think in that direction. The kicker is I know when it comes back (it will, alas. No one wishes it were different more than I do, but I can’t delude myself… it’s disappointing enough when it comes back all on its own), I’m going to have another round of distracted doctors looking at different bits of the damned elephant.

In the meantime, I press on. Because that’s what comes down to me, and if I throw it in and don’t do anything to make it worthwhile, I’m only screwing myself over. I’d love to just say the hell with it, and not go to doctor’s visits and just use that time to do something I’d at least want to do (since I seem to be spinning my wheels again anyway with them) but that means I’m okay with the fact that a good deal of this is simple reluctance, overwhelmedness, and fear of failure and defeatism on the medical profession’s part. I don’t feel defeated, or hopeless, and I’m totally okay with defining “failure” as simply a lack of trying. I don’t have time for defeat. It’s not a luxury I have anyway.

Now, to visit my friend John.

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And We Roll On

So here’s where we stand (well, I’m sitting. Standing and typing is less than easy. Just sayin’.)

Penny had some lovely scope work done, and there was indeedily-do inflammation in her girly pug bits. The inflammation is indeedily-do the result of a spay that didn’t quite cooperate. But (of course) Penny was ending the cycle when they went in snapping pictures, the vets decided it would be not terribly bright to do any surgery unless she was bleeding again full swing.  So we’re holding on till she’s bleeding again. The last thing we want is to do that twice.

Penny is not into the whole intubation with anesthesia deal (who is?) and was hacking badly. Vet recommended Robitussin DM. It works, by god. She hates it. I can’t blame her.

At the very least, it’s a pretty common thingamabob and an easy fix.

My doctor (or, the one that stood in for her) prescribed (at my suggestion, after gentle reminding by Mr. Shoe) an extra propranolol. Okay, so I don’t necessarily have any easier time staying asleep past four in the morning, but at least I wake up during the night, roll over, and don’t have my heart pound. And that’s been, actually, a pretty good thing.

I’m trying my damnedest to write at OStatic, but that’s not always been the easiest thing. And that pisses me off mightily. I’ve also been asked to join (and accepted) a spot on the Linux Journal Readers’ Advisory Panel. It’s pretty low key, but fun. I deserve to have fun, dammit.

You might notice (if you scrolled down that Advisory Panel page and saw my name. I’m the first “s” word) that I had a hair cut. That’s cause most of it fell out, but when it was trimmed and layered, it made it look a lot less manky and a lot fuller. It’s still falling out. Massively. But at least it’s a lot less noticeable.

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Spit It Out, Girl!

Quick run down: My pituitary gland, stalk and sella are all where they ought to be. They refused to smile for the MRI. However, I think the endocrinologist is very tickled he’s got a weird one. I wish the hell it weren’t me, but at the very least, he’s okay with the fact that there’s weirdness, the results of the weirdness are reliably measurable, and the weirdness at least responds to the appropriate treatment plan. I know that central diabetes insipidus isn’t something that any specialists but endocrinologists (and some neurologists and nephrologists) deal with on any sort of regular basis, and that’s probably pretty variable depending on where they practice, but he has dealt with many diabetes insipidis patients (I’m guessing from both the neurological and nephrological areas) and I’m the second one (cough) — ever — he’s dealt with who had it develop without preceeding head trauma, brain surgery, or as a side effect of medication who also has no pituitary abnormalities.

So right now, because he was very emphatic about the fact he only looked at the pituitary/sella angle, and not at the other brain hotspot that can cause the problem (which, incidentally, tends to be the area of the brain that houses the command center for all the other parts of me that like to randomly break), I am idiopathic. Again, I’m the second idiot, um, idiopathic patient he’s had. He said (contrary to what I’ve read) that generally 10% of central diabetes insipidus cases are determined to be idiopathic, and that in some cases the cause eventually shows. The key is it’s something that doesn’t just happen all on its own.

In other news, dear Penny Glottis, the daisy duke sporting pug, gets to have a vaginoscoping! She’s oozing blood out of her girly pug parts. We don’t know why.

Do these make my butt look big?

The going theory is that a late in life spay (prior to adoption) meant that stray ovarian/endometrial tissue was left hanging around and now she’s oozing. She feels just fine (it’s clear, look, she’s wearing PANTIES and eating) and while she thinks other dogs are weird, they think she is just a divine smelling lady.

Heck, she is beyoutiful. And smaht.

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That Weird Limbo

I had to laugh… I saw my eye doctor last week, as I have this little thingamabob on my eyelid that he wanted to keep tabs on. I love mentioning that I’m seeing doctors in my current hospital network. Other doctors think the world of the doctors there, and then you tell them the affiliated network, and believe me when I say they really do throw up in their mouths a little.

He asked what the MRI showed when I told him about the central diabetes insipidus. I said I was still waiting for the MRI, you know… the central office at the network — And the eye doctor busts out with, “It’s not your problem that they can’t do their jobs in the central office! Hound them. You need to have the MRI.”

Incidentally, I had been hounding them. I came home to find the MRI had been scheduled for the next day. Hey now.

That was Friday. I guess I have a brain in there.

So now I sit here in that extremely weird state knowing that the water deprivation test was decidedly positive and incontrovertible. But that doesn’t mean the MRI will tell us why, or show anything at all. I sure as hell don’t want anything to be wrong, but — newsflash — something is very wrong. So I really hope that something shows up to at least give something to work with. No idea if that’s gonna work that way.

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Hey, I Think the Hospital Network and I Have the Same Problem!

I came to the conclusion that the local teaching hospital/health network and I have a pretty similar problem. See, when an appendage or superfluous bit is busted or diseased or screwed up beyond repair, you can chop the bastard right off. But I can’t cut out my brain stem. And, sadly, as compassionate, dedicated, interested, and attentive as the doctors, nurses, and even the front-line-in-the-trenches office staff might be, they’re plagued by a defective central nervous system.

And I guess, just like my stupid brain stem makes my heart work hard when it doesn’t need to, and fails to send my kidneys the vasopressin they’re expecting, the central office is kinda taking their sweet time to send requests to the insurance company and referrals for procedures outside the system out where they need to go — it makes the jobs of the appendage like medical personnel that already have a pretty friggin’ unenviable position  (yes, not as crappy as my position, but I don’t really envy them their part in this either) even harder. They don’t need their jobs to be harder. I don’t need their jobs to be any harder.

The central office (at the network, not to be confused with my brain stem) finally took that leap and hit send on my doctor’s request for approval for an MRI sometime mid to late last week. As I figured, the insurance company then asked for a little more information. I did expect that, seeing as it has only been six months since my last MRI, but the occasion for this MRI wasn’t going on then, and this occasion, with an objective measurement and diagnosis,  requires that an MRI be done to try to ascertain a cause.

So okay, cool. The doctor sent the additional information to the drunken monkey nerve center (wow, was that called for? Yeah, what the hell) on Friday and the nice front line lady on her tour of duty on the phone said if she doesn’t get a call from the central office with a status report and to ask if she’s got Prince Albert in a can today, she’s going to take it out on them tomorrow. I am guessing that means she’s going to call right when the office opens, and talk really loudly so as to aggravate the hung over rep.

It blows, though. It makes my life harder — and seriously, I know I’m not being unreasonable getting on them about it, but I can’t get a line to the people who need to have the unreasonable brought down. The people who get the frustration are the people who seem to honestly be trying. I know figuring this out is going to take a (longer) time. The longer time shouldn’t be made even longer because someone is slow to start filling out a template with a physician’s request and hit the damn transmit button.

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It's the Little Things, I Tell Ya

It’s the stupid little things that git ya and the little things (even stupid little things) that make it worthwhile.

First off, had a really productive doctor’s visit with my youngin’ doctor. It should have been unnecessary, but sadly, for me, it was, and it was probably an eye opener for her. While Mr. Shoe and I are understandly annoyed as hell at the situation in general, it certainly wasn’t specifically at her. And I do think she was a bit lost and casting around for a month or so. I understand, and I think it was unintentional and I knew it had to be pointed out if it were in fact the case. Anyhoo, it boiled down to her wondering exactly what we were expecting from her as a generalist. We told her. And (it was sorta cute) she said in amazement, “So, wait — you just asked me to do what I normally do as a primary care doctor? That’s what primary care doctors are supposed to do.”

It is, I guess. You don’t find too many out there who are willing (or able) to do that, though.  If she finds it a foreign thought that someone in her position wouldn’t do the job description to the best of his/her abilities, then she is seriously someone I totally want to work with.

And we’re finally going to be able to make the whopping 2.5 hour drive to see my parents shortly. We haven’t been up there since April when my dad had his heart attack and subsequent surgery fun.  Before that, Christmas. Okay, right, what’s a two and a half hour drive when I’m a passenger right? The way I’ve felt, it’s hell. It’s impossible. It probably is still going to be an ugly few days of recovery later. But at least I can make it now without needing to cart three 24 pack pallets of water and having to pull over every ten minutes on 95 and the Spaulding Turnpike to find a bush to hide behind. Truth be told, packing for a trip up will be a feat. I don’t care. I mean, hell, sitting here sucks.

At least my dad is doing really well. Okay, the clutch went on his new truck and he’s bull (a sign he’s doing well), but he was cleared really quickly to go back to work (it was only like a month after the surgery) and he was allowed to tool around on his tractor mid-summer. My mom is just as happy she’s been relegated to push-mower work — my dad tends to think if it doesn’t have a “purposeful looking” flower in bloom right now then it is a weed to be shorn down.

I wish I could write more at OStatic and a few other places that have called upon me. I was paid a great compliment by the Historical Society, and hell, I wish I could get back there and help them out.  I know (as doctors not directly involved in my case keep telling me) that we might not have an answer any time soon — or ever. But y’know, there are metric f-tons of connective-tissue and neuromuscular and autoimmune disorders that are unspecified and uncategorized, with the type of disorder determined by what tests show (or don’t) and clinical history and presentation. I don’t need it to have a name. By this time, I’m sure if it does, 87% of the doctors I’ll run into in my lifetime won’t ever have heard of it, so it’s almost irrelevant anyway. But it’d kinda rock to know what’s busted and the suspected mechanism of the busting, so that we can do whatever we need to to get things closer to where they should be. If I have to play symptom whack a mole, fine. I know I’m probably never going to have a day I feel great again, and I have to be okay with that. I guess I am as much as I can be. I’m probably not going to have days often I feel even really good for a large part of the day, and I’ll deal with that too. But man, I know it can be better than this. I think we’re closer to at least a ballpark answer, but I don’t expect anything to unfold too quickly. If it does, that’s probably bad news, actually.

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Part of the Solution, or Part of the Participate?

Well, it would seem that I simultaneously have scored myself some cloud breaks and some canned worms. I got to pay a visit with my homie the endocrinologist. He said something today that I have never heard a doctor say before:

“I have an answer.”

Holy cow. I mean, I knew I felt loads better (or at least less like having to pee and chug water) after the desmopressin (DDAVP) injection during the water deprivation test. It’s just that I have this tendency, you know, to feel one way and have tests say something completely different. But not this time.

I do in fact have central diabetes insipidus. Again, this has nothing to do with blood sugar, insulin or pancreases (pancreasi?). So please, keep them JellyBellies coming… It has nothing to do with medication I’ve taken in the past (if it did, it’d have shown up prior to this summer), or stuff I’m taking now (he’s certain).  I’m pretty sure I’ve not had any brain surgery or radiation therapy performed in the last several months, and I’m equally as certain I didn’t fall on my head and break it (well, again, recently).

So that means it’s something else. First, though, to alleviate the huge pain in the ass factor, and treat it. Fortunately, central DI is a little more obliging when it comes to management than the nephrological type.  I start with 0.1 mg of DDAVP tonight, and if I find it’s not quite cutting it, I can take another 0.1 mg eight to twelve hours later. I have to be careful not to drink when I don’t feel thirsty (since my thirsty sensor is faulty, I’m going to have to watch that I don’t let things go overly long). Even if I don’t feel anything but less compelled to have to visit the latrine, that’s okay in my book.

Second, I need another MRI, with special attention paid to my pituitary/sella/hypothalamic region. We’re looking for tumors, dark spots, white spots, Jimmy Hoffa, Amelia Earhart… You name it. So there could be something there, since it seems that they don’t always pay a whole hell of a lot of attention to that area anyway (lovely!) and the DI started a few months after my last MRI, and it might not have showed anything then.

There’s the ever present (and extremely likely) possibility they won’t see anything. Well… anything that’s amiss. That can happen. But again, the deal is: the test confirms that it’s neurological DI, that I am either greatly or completely unable to make or distribute the anti-diuretic hormone, and even if it’s idiopathic, it’s that they don’t have an explanation of why it’s busted, not that there isn’t damage. And idiopathic DI doesn’t always remain idiopathic.

If they do see something, I’d be surprised as hell if they can actually recognize what it is. I mean… there are lots of things that can resemble each other that go wrong in your brain and spine. Really different things that look very much alike. Like evil twins that are… both evil. So the chances are really good, see something or not, there’s still a haul ahead.

But in a body riddled with general, subjective stuff going on (except for the stuff they’ve determined was wrong but didn’t explain enough, so who gives a crud), this is something that’s clinically objective, and is pretty damned distinctive. I mean… To the point of pretty damned unusual, especially with no known head trauma or surgery.

It could still take weeks, months, years — and at this point, figured out last year would be way too long — but whatever pissed off the existing yucky but certainly not horribly debilitating autonomic issues is starting to show its personality. It’s scary, because it means whatever it is probably isn’t done.  But it can give us some clues as to where to find it so we can deal with it sooner.

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A Break in Clouds or a Can of Worms?

We’re going to not say too much about last week. Except this: I ended up seeing an endocrinologist, because I drink a lot but pee a lot more. A lot more. And the bladder started it, your honor. I was convinced of that, my doctors — not so much. (While I understand their logic, but seriously, I have nothing but time to sit and work out the chronology here, folks. My bladder started this water fight.)  The endocrinologist on Friday, however, was pretty confident… Actually, a little too confident for my comfort, but hey. He is pretty sure I’ve got some sort of diabetes insipidus going on — either neurological or nephrological (not dipsogenic…). He’s unclear on partial versus complete. I don’t know what partial versus complete means, really.

So today I had a water deprivation test. Usually they do these inpatient, and he said it might work out that way.  Here’s the issue, I’m a stubborn girl, and I figured I’d do it outpatient as he felt it would pretty safe, and that I wouldn’t cheat (yeah, evidently, people cheat. Why?) I’d stop drinking anything at midnight and at eight this morning I’d have a blood draw and pee in a cup. Then I’d get a shot of an antidiuretic hormone, wait an hour, and then pee again. The idea is that we get a look at how things are baseline when I don’t drink.

Believe me, eight or nine hours with no fluid is its own hell for me. I did okay-ish till seven. Then the muscle twitches, the head pain, the back pain, the horror, the horror.  I thought I was going to die, and I wasn’t going to stop the test because I was an hour out from starting the wrap up. I was not going through this again.

The interesting bit was the ADH hormone (this was DDAVP) worked. I mean, okay, I don’t know if my blood osmolality was high or my urine osmolality was low and didn’t hit the golden (heh!) norm after the eight dry hours (I’m guessing both were somewhere in the high low spectrum). I don’t know what the change in urine osmolality value was before DDAVP compared to after. I do know that I was allowed a small amount of water after the DDAVP shot. And where that small amount of water would’ve been less than a drop in the ocean of my dessication previously, those few sips while I waited for the second test were enough. And since then,  I’ve only had to go every two or three hours (as opposed to two or three minutes — no lie). And I drank as much water today, sum total, as I would normally in any random hour and fifteen minute time frame. I do not want this stuff to wear off. It will, of course.

So I see the endocrinologist for the results next week. I am guessing that it’s the neurological type. That means an MRI where they actually consider my pituitary and hypothalamic regions (they don’t normally spend too much time reviewing that area, I guess… since, you know, I’ve had a lot of my problems seeming to originate there.) I know this is recent, I know I haven’t had any head trauma, surgery, or radiation. I don’t think I have any tumors. I mean, I really don’t. I am fairly sure there is a lesion somewhere there, honestly, in my gimpy hypothalamus but I don’t know why, or if it’s actually even visible on imaging.

So where will it get me? Off the toilet, for one thing. That’d be awesome. Because I can’t drink enough to keep feeling okay, actually, but I can get close. But this is the biggest pain in the arse, ever. It’s in some ways the least of my worries, and doing a great job at holding me back. (The idea was that I was ramping my “thermostat” up by drinking too much, and that would mess up any autonomic tests. But it would seem that’s not the case, I guess… And I’m drinking a lot. So treated effectively, it’s either less of an issue, or something they’re just gonna have to deal with and wrap their heads around when figuring future autonomic tests.)

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