I Took the Road Less Traveled By: Histiosaywha?

So after the sweet GP saw me, she sent me off to get myself magnetized in the giant picture taking tube of magnets. I went for a double load of fun with an MRI and MRAs of my head and neck (arteries, nothing scarier than seeing a disembodied carotid or two hanging there on a screen, folks).

Surprise, I also was scheduled for an appointment today (booked just before the MRI went on) to see the neurologist. First, sorry, I love you internets, but I called my mom first before I said anything. Cause, like, she’s been waiting too.

The images had been read, and the neurologist — who I know I gave a bad deal in November because my stand in GP didn’t send records, and that ain’t fair — said he really wanted to see the images before he read the report.

His idea was this: I am a freak of nature. I think it’s funny because he winced when I said it. He thinks (now, who the hell would have mentioned this before?) that the diabetes insipidus is the real key here. Why the hell did that happen? And better yet, why did it happen with all this other weird random crap?

Because (stop me if you heard someone who is friggin’ brilliant say this before) these are an odd combination of symptoms that do sort of… point in a direction. It’s just one of those directions that no one goes. No one goes there for a damn good reason.

What popped in his mind? Ahem. Well, histiocytosis X — which is I guess technically not the term used anymore, because they’ve started to piece together the different sorts of disorders that fall under histiocytosis like disorders. Some are malignant, but then they end up being called sarcomas I guess… Mostly they gang up on little kids… under the age of 10. It isn’t really something that comes up a whole lot with adults. It can kill you (and be warned: sites do have patient pages on this stuff, and most people make them for their kids. It is sad. It is absolutely devastating, but it is a sort of thing that bodes worse for the under two crowd). It doesn’t have to kill you. It can make life miserable. I am gathering it doesn’t have to.

There are lots of different types… and we don’t know for sure if that’s what that stupid little intensity change on my pituitary means (okay, it wasn’t little. I mean… he actually didn’t need to point it out). He isn’t sure, but he’s pretty sure it isn’t normal given the circumstances… Keep in mind there’s some silliness that 25% of the population has a pituitary tumor at any point in their lives with no real sign. Most people who do have symptoms  from pituitary changes don’t count diabetes insipidus among them. One almost immutable fact about histiocytosis kinds of infiltration: there is a huge incidence of central diabetes insipidus.

But it is a weird sort of thing. It was categorized as a cancer, but it isn’t always. I mean, it behaves like one, and it grows stuff on organs and such… Many adults with Langerhans Cell (who weren’t kids with LCH previously) have a single lung nodule (I’m not saying, I’m just friggin’ saying). They are also smokers, the story goes, but I tend to wonder if it’s just because they are more likely to biopsy a smoker’s lung than a non-smoker.

But it isn’t a cancer, and they’ve learned a lot in the past few years, so oncologists aren’t so much “in” on it — especially with adults. It tends to be handled by hematologists, who all tend to be in the oncologist business — this is also pretty understandable.

The belief is that it originates (like some cancers) in the bone marrow (bone lesions are pretty par for the course. My skull looked okay. but adults and kids are often different in the bones affected). At heart, it is an immune disorder, or at the very least, a nice indicator for an immune system gone stupid.

But oncologists, hematologists, and immunologists don’t necessarily deal with it.

The chances of Langerhans’ Cell happening in an adult (past 10 years old or so) I guess is a one or two in a million (so buy a lottery ticket today!) The non-Langerhans’ histiocytosis shebangs are even less common. Erdheim-Chester has a registry of some couple hundred people worldwide. My money is on it being more common — but sometimes things don’t ever get figured out, never mind in time, so who knows?

If you’re one of those people inclined to look (and I know some of you are), it is recommended no stock be taken in prognosis for adults (hell, don’t pay attention for the kids, either… just enjoy your kid and do your best, because doctors can’t predict much of anything sometimes and timeline never make anyone feel less pressure) . The sample pool is small, and someone probably peed in it anyway. Treatment — and reaction to it — is different, and has varying levels of success. The idea is that there is a history of success, and it is real, honest to god success. Well… I mean, no one gets off this ball alive anyway. I also have a skewed view of success — but I was over the idea that this was something curable ages ago, folks.

There are other disorders (such as neurosarcoidosis) that cause these things, and again, we’re getting to the point that they’re all weird and treating them is a variation of seeing what works (often steroids, low doses of chemo, MS medications).

The neurologist is… well, dammit, he was sweet. There. I said it. I mean, he was nice enough when I saw him in November, but I’m not a good patient to dump on someone unannounced.  The doofus rounds doctor who called him in with my low blood sodium (she thought I had erratic blood pressure… no, I have low blood sodium, dumbass) tipped him off that I was more interesting than he’d thought. He was downright warm and friendly in the elevator. Today, he was very… god, dare I say it, tender (he still can’t pick up the phone and didn’t apparently have laryngitis the other day when they tried scheduling me though, just  sayin’).  He inquired about Frank the Bunny’s take on my diabetes insipidus… He saw her note in the system, and he suggested that histiocytosis X was a likely suspect at this point.

Except this time, I wanted to hug him when I left his office. I mean…. I know. Freaky.

He’s asking a couple of radiologists to take a third and fourth look at my MRI — the report didn’t mention any oddities, but he thought it looked odd and (ahem) he said while the person reading made a difference only in theory, some readers are more theoretical than others. It’s easier to miss an abnormality than pick one out (bet it’s harder to detect something that isn’t there ought to be, but hey).

And because I am weird, and he has the contacts, I am going to MGH. He is running my case by his colleague there, and I’ll be sent through for work up. But he knows this person, and this is what this person does — well, weird brain stuff — and the idea is that I won’t necessarily be treated by neurologists, but the neurological aspect is now showing up on imaging studies. They won’t necessarily need to go digging in my brain (hands off, folks) because the beauty is that… well, I have other lumps (sigh) and usually skin and lymphatic systems are involved if diabetes insipidus is present.  And removing the growth doesn’t do much.

So we have someone (well, two someones, as the Dorktor had thought this was possible back in the day before this all hit the fan) who figures that it has to be one of these disorders. The evidence to support it comes from what’s been seen and what hasn’t, and a plan is starting to take shape. It’ll take time.

We told him that at this point, time is not an issue so long as the plan moves forward with it. Determining what we’re dealing with to the best of everyone’s ability will aid in treating and managing. Treatment is usually… well, it takes a while to have an effect. I can be patient if the other parties are putting in their two cents.

I wanted to hug the neurologist. I feel dirty.

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Don't Blink

Because either the website will flub up, or maybe I’ll be tossing my cookies. (Heh, British slang is awesome by the way — tossers, scrubbers, wankers….)

I finally got to see my sweet and very awesome GP today. I am glad. Cause… computer use is making me feel queasy (again) and I’m just not right. Well, okay, some of you have known me for a long time and know that. In fact, maybe it’s a selling point.

First, it was determined that my blood pressure has been running high. Yes, yes, mostly. The consistency is new… Usually it tended to have a week at 140/100 and two weeks at 95/65. Now it’s been right there in the 132/82 ballpark — for a good six months. Not great, I know. Not so bad, either.

Then the nice nurse left and the sweet GP came in, and she says “How are you doing?” and she looks at me and stops and says, “What the hell was the doctor in the ER talking about? I totally notice that your face is sagging.”

I said, “Yeah, you know me. It’s obvious if you know me, but if you are expecting… Harvey Dent after the accident, it’s nothing. Look, I can make the threatened chimpanzee smile without an issue, but I can’t always just smile.”

All right, I didn’t say anything about Harvey Dent. I did say “threatened chimpanzee smile.” Because that’s what it is.

She said that it was really obviously not the same as it looked when she saw me. I gave her the history. She’s kicking the neurologist’s office again. He did see me when it looked like it does normally — normal crooked — and this is not it. But he got the report from the ER saying, “Meh.” Since he thought it was meh to start with, there’s been no rush to do much of anything. (I told my sweet GP I spent more time with the physician’s assistant, who seemed to have clue, than I did the doctor.)

And my sweet GP had some baby bovines over that, and now she is ordering the tests. The MRI, and an MRA, cause what the hell, they can do them together. I mean… not that I think the MRA is necessary, but then, I hate that doctors decide if a test is worthwhile or not based on whether the outcome will throw a wrench in their world view.

My kidneys are apparently working (which is good) and my bladder is the problem with the weird urinalysis (I could still just have some inflammation, though — like, y’know, endometriosis, the crap in my lungs, the crap on my hand tendons… they could all cause stuff like that). That’s good and all. I don’t want another cytoscopy. Thanks.

She wanted to give me prednisone because it does work. Something’s friggin’ inflamed. But still… no reason to for sure, but she feels badly. She did think that neurosarcoidosis and other sorts of granulomatous bull (even crap like non-infectious encephalitis) is very possible.

So I had some labs drawn. Metabolic, and thyroid, because we love to test my friggin’ thyroid (tell me that won’t be messed up eventually — but at this point, it’d be another casualty) , and the ACE whatever enzyme which might help determine whether sarcoidosis (systemic) is what we may or may not see in other areas. And I’m going to see the dermatologist in July or August, the one she wanted me to — since she thought that this guy was a little bit of a fruitcake. She laughed her ass off over his proud “MS!” declaration. Yeah, sorry… No Kewpie for you, dude.

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53 Weeks a Year

So we turn up at the sweet GP’s office, and… um… my appointment was apparently set for next Thursday. So either Mr. Shoe scheduled it last Friday and the office chick didn’t realize she was already working off next week’s schedule, so she just said “next Thursday” or Mr. Shoe missed the “May 20th” qualifier.

Either way, I’m seeing the sweet GP Monday. I mean, I’m sure the chick who was there last night was also wondering why the hell I couldn’t wait a week… But let’s put it this way: Sweet GP asked if I wanted to see one of the other doctors today, since she’s not in Fridays. She was afraid it might be a kidney infection, and I’m sure it isn’t. Okay, she is too. I mean, if it were, it would’ve been obvious on the last abnormal test, because little has changed.

She also asked if the neurologist’s office made an appointment yet. Nope. She said it was weird, cause she saw a note that he put in the system to his office staff to call me and schedule me in. No, not weird. Does his office staff check? Do they know to? Did he have a sudden attack of laryngitis that rendered him unable to speak to the staff? He could type in the request, so he could dial the phone… So it might be the case. I mean… his office-within-his-practice is right across the hall from the open scheduling area. It must be laryngitis.

Okay, I’m sorry. I love technology. But sometimes it’s more efficient to do it all analog, you know?

If I don’t hear by Monday morning, I’ll call them.

I wanted to see the sweet GP because I wanted to fill her in on the details of the face stuff — it has happened before, I felt it this time, and because she knows me, she’d have sent me to the ER anyway, because she’d have noticed it. I told her that the Dorktor spotted it my second or third visit with him as something new, and then saw it resolve in the coming month or two. I mean, that’s not to say I’m not crooked to start with. I am. But it is a change. It’s not the dramatic look the ER expected — it’s dramatic enough that my sweet GP would do due diligence and send me. I mostly wanted to know if there was anything I should do to protect my eye… It does close, I think, for the night, enough to protect it. But it goes from dry to feeling like it’s going to forcibly shoot eye boogers out if I touch my cheek. Sorry for the image. No, I’m not. I could be a lot more disgusting, actually.

But it is the whole, um, water treatment issue that is making me more uneasy. Let’s put it like this: I just was mainly concerned about my eye when I called to talk to her about the facial droop, and the fact that I realized my sweet GP wasn’t aware that that had happened before. I wanted it to be duly noted, and to take any precautions that might be necessary. But I’ve spent a while wondering if I just reacted very variably to desmopressin, or if there was a problem elsewhere. I started seriously wondering when both sides of my back/flank region hurt (so I couldn’t blame the surgery) and the full feeling that I get in the front and sides also became bilateral. I’d felt the fullness before, but it was intermittent, though kinda clustered. It happens more often now (not constant, though it is pretty much daily), but even a year or more ago I would notice it.

I know for sure I respond to desmopressin, so my pituitary has messed something up. I know that the anti-diuretic hormone kicked back in after the surgery, and then pooped out again. I don’t know if the low blood sodium was purely due to over production of ADH, or a combination of ADH and pissed off kidneys. I know my kidneys have working ADH receptors, though.  I also know I’m taking a desmopressin at night, and still getting up three times or so needing to go… And it’s not little fairy princess tinkling, or even My Little Pony Princess tinkling, it’s more like Secretariat after a long drink out of the Stanley Cup.

Fine, whatever. I know. Horses suck on ice.

Still, it’s better than it would be without it, because… well, it’s all variable. I figured it like this: until we sort out what’s going on, I think I’m fine taking the desmopressin at night. I think it’s necessary, because I’m tired enough as it is. And you don’t drink lots at night, and I sweat like… not like a princess, anyway. I have actually been dehydrated enough to get tunnel vision on the way to the bathroom in the middle of the night, and desmopressin keeps that at bay.

It’s easier to quickly put dehydration right than low blood sodium. And mild dehydration is unpleasant, and you react to it. Mildly low blood sodium you don’t… Until it dips dangerously. I unfortunately have a complicating factor that I don’t get thirsty. I will get tunnel vision, I will not be able see, or stand up straight — but I will not feel thirsty. It’s just damned weird. It does complicate taking desmopressin though.

My sweet GP asked if I wanted to see Frank the Bunny the Endocrinologist. Nah, cause she’ll tell me what I know…. And I think I love endocrinologists because they’re almost like really good psychiatrists this way, they all ask, “What do you think will work?” I mean… especially with diabetes insipidus. Trust me, I know how I feel before it shows in my blood tests. I might fix an issue before it shows, even, without knowing (which is what threw everyone last year… my electrolytes were off, so I put them right before I realized this whole thing was not just a transient problem… in less than two days.) My kidneys are reading the desmopressin that I take just fine, but it doesn’t seem like they are operating as they should. My brain is not making any vasopressin, so I tend to pee a lot, and I get dried out, breaking skin and tight red swelly hands, feet, ankles and wrists. But if my kidneys are not filtering stuff right, ADH be damned, I might end up retaining more than I want to and just feeling yuckier than I have to.

I think there is something up, though, and if there is, I want to head it off at the pass. I am getting the distinct impression it’s more likely to damage things quickly if I took the desmopressin during the day and didn’t drink enough due to no thirst response, even though it’s annoying to constantly be in the latrine. I feel at least a little more secure in drinking that extra glass of water here and there, because it really lets me know that I need to in other ways. Diabetes insipidus isn’t life threatening at all if you have access to water, it’s just a pain in the ass. Treating the neurological type with medication is easy, if you have a thirst mechanism that isn’t completely anemic. So in I go on Monday, because we’re pretty sure all round it isn’t a kidney infection. It could be… but if it is, really, another two days won’t do a whole lot either way.

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I Promise I'll Make Sense Tomorrow

Heh, I happened to read the post the other day and realized that I made no damn sense whatsoever.  The good news, though, is that the bizarre external use only MetroGel (if it were internal use, it’d be MetroSexualGel? Sorry, I get punchy when feeling yucky) does seem to be getting a handle on the burning. I mean, three days does not a trend make, I know. And I have to apply it right when the redness starts, or else it can’t quite get it all under wraps, but it has lessened a bit, and it is cumulative over time. I mean, I’ll probably have to always have a handy tube available. Hopefully I won’t need to put the crud all over all the time. I care very little about the redness (although, because doctor’s offices are hot as hell often enough, it always shows up there — and they interpret it as “becoming emotional” — took me the longest time to figure out what the hell they were getting that impression from —  really they just need to turn the damn thermostat down). I am happy the burning feeling has cut off a little. Not that it was necessarily painful, but it was less than comfortable and it usually ended up making things that are also annoying more annoying, and I don’t need to feed any of that if I don’t have to.

I am seeing my sweet GP late tonight. I am happy about this. I mean, that’s a scary statement in and of itself. I kinda feel… not good. I mean, not “hey, dumbass, your sodium level is 123, this is why you can’t remember any of what happened today” bad, but it’s one of those times that the “illness terror threat” is moved from its normal “I’m mad and concerned my life will be like this for a good long time” to the “I’m mad and concerned that this might be like this for a shorter time than I really expected and with lots more damage than I would ever have wanted.”

Truthfully, it’s been a nagging, really nagging, concern for a little over a month, but the nagging components have been present for a good six or eight months. And the fact that I’m just starting to recognize it isn’t terribly surprising. I’ve had microscopic amounts of blood in my pee for years. Years. Yeeeaaaaaars. This is not unusual. No worries, they say. Okay. I mean, is it a problem every time I do a urine test it’s like that? I don’t know. My sweet GP thought it could be.

Then the last three years or so (I can’t remember the first year if it was this sorta thing or not… but I know the last two have been off) I went from microscopic amounts of blood to weird cells/cell casts.  I guess that urinalysis is pretty subjective, even when done with test strips (I swear, when I worked in the pet store, we used to get people bringing in water samples with deceased fish and I’d wondered if they’d peed in it… but I also know the water test and urine test strips never really match the color palette they use to read results off too closely.) Microscopic analysis I gather is even more subjective. I mean, if I’m making jokes about MetroGel, think of what I’d be like looking at urine sediment cells under a microscope all day. Pathology report: Holy shit! I found Waldo! — He appears non-malignant, but recommend cytoscopy if patient has a history of harboring Carmen San Diego.

But this is the second time at least we’ve found atypical cells.  I’ve had a cytoscopy, and I agreed last year with the nice urologist (he’s the bomb, really) that I really would rather not have to do that again, especially since atypical rarely means cancer, and that area doesn’t hurt, I’m young and nothing would seem to indicate it as such. He thought a nephrologist might make more sense given the fact that I seem to have other, larger, more suggestive of immune screwup stuff going on — seeing as lots of immune screwups manifest themselves there.

I didn’t though. Why? Unfortunate events. First, I left another sample for the urologist, behind the silver door in the bathroom (in the container, like the sign said… I thought it odd they had to instruct patients that the sample should be… well, in a cup, not just deposited behind the door.)  Evidently, someone spilled it, or something. Maybe I put the lid on wrong. I don’t know. They said that there wasn’t enough to read… There should have been.

Then, because sweet GP was going on leave and thought that I’d be better off with the ol’ Dorktor, she said he could do it, and the records would be there. But I don’t think he ever did. I mean, by that point, too, the diabetes insipidus started. And I can see where that would screw with how things look. Especially where damage can be so slow.

I have noticed that things just aren’t behaving. I thought it was (prior to the thymus pull) my being too cautious with fluid intake on desmopressin, because I don’t get thirsty. I thought that I was letting myself get too dried out, because there’s no long acting forms of DdAVP, and it was acting — well, sometimes I was fine, sometimes I would dry out completely. I can always go, of course, but I’d still inexplicably be dehydrated even if I wasn’t going much or if I drank enough. And other water balance issues were present, but I figured it was my inexperience with the desmopressin and my lack of thirst response.

But my pre-surgical labs were off. I mean, not horrendously so. Potassium was high. My blood pressure has been more prone to run high of late than desperately low, but… you know, jeez, I wonder why. It’s also not horribly high. Unless I talk (go figure).  So things have been less than wonderfully behaved, and they’ve had good reason. And truthfully, I wasn’t sure if I was just having desmopressin fallout or if something else was weird too.

I think something else is weird. It is also, as the nice urologist said last time, probably more in keeping that it’s a kidney thing if it is anything at all.  I mean, in that department. It also means that my sweet GP’s Hail Mary pass at a diagnosis last year (which really couldn’t be ruled out by a negative blood test, nor could it be confirmed had it been positive — that’s a pisser right there, eh?) could be correct. Again, smaller pool of suspects…. Because thymic involvement, diabetes insipidus can kinda click the wider field of suspects with lung, central nervous system and kidney involvement into a smaller pool — and all three of those systems involved is a decently sized lake, but it’s certainly not Lake Huron, you know?

I do want to know mainly because I am afraid taking (or not taking) desmopressin might make things worse. I mean, I have to take it at night. No question. During the day… Well, I mean, as long as I can at least spend time outside the latrine and manage the hydration levels, it’s not like I’m able to do a whole lot any way. But I notice that taking a desmopressin tends to have even more variable results than ever, and that probably helps very little.

Of course, not taking it could skew test results (like it might have last summer). It’s just a complicating factor that is often a little easier to manage (mostly psychologically, again, since I have no thirst response) with less than more — and either way could potentially obscure or cause damage, or have no effect at all aside from making life less pleasant.

Cause man, our bathroom is stuck in the freakin’ 1960s.

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Inflaming! Flames!

So, um, it seems that I had rosacea once (which is basically as descriptive a term as “arthritis” because there are bazillions of sorts and causes and stuff…) and the fact that I no longer get the pimply things with it indicates that it’s burnt out. So the red flaming face is permanent (though it is transient… I mean, that does make sense, really, I’m not ragging on anyone yet). I said, “You know, if I really cared about the redness, I’d have probably come in with the acne looking stuff. But I really have bigger fish to fry… I could fry them on my face that burns to the point it blisters, but my sweet GP thinks we can look at something here and get a clue.”

Or maybe we can’t.  I knew two things early on: I wasn’t pushing it here. If this guy reads the pathology, I want him to know what he is looking for, and recognize weird crap in it that we might not have been expecting.  The doctors and nurses (nurses are the freakin’ worst for this happy crap) who say you need to advocate for yourself need to tell people the caveat that you can not advocate to a brick wall. They do not have ears. I also knew that I kinda liked this guy, and I wasn’t going to hold back on what I really thought thus far.

First, he gave me the “I don’t like to just punch holes in patients for no reason, and specialists are good at one thing, but your GP has to be the one to tie it together from the symptoms.”  Right, and I don’t think my damn skin is doing any of this, but my GP has worked her ass off and endured and toughed it out and actually has been a real friggin’ trooper. So there. At this point, the only difference between her and I is that I feel like shit the majority of the time, and she gets shat upon by her specializing peers who wonder why she can’t just pull the answer out when they immediately shoot down whatever she asks them to work up further for some idea she has.

He kept saying, “MS… Have you been worked up for MS?”

Yes, dammit. I have had so many MRIs that I stick to the damned fridge. And I am getting another, I know, and that’s fine, but… I also know (god help me) that chances are good based on my medical history and family history that it will come back, eventually, off. And here’s what I’ll be told: “Test things enough, and there will be anomalies.” Right. I mean, not artifacts on the images… But sometimes things look weird as you age. Well, jeez, I ought to be 175 by this point.

I have, I told him. And Lyme. (“Lyme is the new syphilis!” he says. Ooookay. Well, for the record, they tested for that as well, because lupus and various others tend to return positive syphilis labs. But I don’t have the syph, either.) I don’t have lupus. In fact,  usually a woman my age should have, here and there, false positives on those tests. Um, I did have a false, weak, rheumatoid factor….. which never showed again, and once I had a trace ANA that wasn’t enough to read on and never showed again. Five years ago.  I have had these tests a good couple dozen times.  I don’t have anything autoimmune in nature, it would seem. At least, that they have a blood test for. I don’t have herpes simplex/varicella/complex/difficultis/dumbassedis either. I am apparently in awesome shape.

Oh, sorry, did I leave a handful of hair on your chair there? Damn. Well, except for the diabetes insipidus that no one can explain, the fact that my face is slumping over (oh, he did have a hell of a time with that trying to… do whatever they evaluate on your face. I could tell. He was screwing his face all up and taking my glasses on and off and stuff.) And my thymus… We’ll get to that.

I went in and I told him that my sweet GP wanted to get a skin workup for histiocytosis sorts of things, and I dunno, stuff that shows when you have facial nerve screwups and the part of your pituitary stops working that no one ever has stop working unless they’ve got some weird stuff going on (and the motion sickness threatens, but hasn’t hit too bad yet).

But he won’t do that, because…. Well, like, sarcoidosis is a lung thing, mostly, for instance (yes, and the neurological form is a sometimes visible and can present with all this stuff, much the same way the histiocytosis and nastier immune things do). Are my lungs okay?

They function. I mean, my oxygen saturation sucks sometimes, but my function tests are damn good. And I have that nodule, but… It hasn’t grown, they just went in and took my thymus out as it was enlarged.

He says, “Why didn’t they biopsy the nodule?”

As my head reels over the answers I could give… Because I don’t smoke, so there’s less reason to be concerned about a fairly hefty but not fast growing buddy mysteriously showing up in my lung at a young age. Because they just would have done the same thing as they did with my thymus, which was good and all, but didn’t tell me more than I don’t have cancer, which… I mean, that’s good and all…

Then he says, before I can ask him why the hell he’s asking me that, “Wait, your thyroid, or your thymus?”

Thymus. The one that usually just behaves for people and fades away, not the one they’ve done another million completely negative tests on.

“Do you have low Vitamin D? Did they take all four?”

Ugh. No. No, dude. Not my thyroid, not my parathyroids, my thymus. They might have nicked a parathyroid or two, for all I know, I guess those little bastards are sneaky. But I only have one thymus. If I had four thymuses, I… I’d be in the veal business.

And I have had low vitamin D. Forever and ever amen. And I have high end of normal calcium, and taking supplements doesn’t do much. Did the horse-pill supplementation for a full year, my Vitamin D went from 4 to 8.  My calcium went from 9 to borderline high 10.6. My parathyroid function was normal.

I shouldn’t be able to tell anyone this. I could. He said, “Was the Vitamin D over the counter or…” No. 50.000 IUD. Once a week for a couple months. Then every other week. For a damn year. If there’s something wrong, it’s screwing with my Vitamin D (or how it shows up on tests), it’s not because of it. Just like… my problem doesn’t originate in my skin. I know this. We need to find out what the hell it is.

MS has been associated with low Vitamin D.

Yes. I know, and so have a million other things — some of which show up systemically and cause many of the problems — the weird, objectively observed problems — I have now.  And most have been ruled out. Like MS.

He said (I love when doctors do this… Poor general practitioners must have such a complex. First, they’re told they’re the first line of defense, that they are there for managing “common” stuff — sore throats, strep, cuts — and leave the brain surgery to the brain surgeons. You are generalists, you plebes… and then they get this next bit…) “Specialists are studying their specialty areas before they leave med school, so they have a myopic view. They don’t put together the big picture, that’s the job of the GP. They see all these overlapping symptoms and start looking at the common suspects.”

So specialists have mostly arcane, useless knowledge, and generalists are told simultaneously they need to know it all, but they don’t know jack? Wow, medicine sounds like a great job. I love abuse!

I said, “Yes. My GP has been here for years with me. She has moved through all these common suspects. Repeatedly. They are not what is going on. She has pulled some pretty impressively weird suspects out too, and they do fit, and they still fit, but no one will look further and she can’t know it all because nobody knows it all. She’s saying something is very wrong, we need to put it together, and no one can help her gather the information she needs. It’s like I’m the damn windfarm she wants to build, and every one specialist she refers me to is like, ‘Not in my completely homogeneous view of the ocean. Great idea though, but maybe so and so should do it.'”

So, good news is, he did get the point. I mean, god help me, they usually don’t. I also probably will end up with a skin biopsy. It’s not as invasive, they are often revealing. And I really did kinda like him, I mean — he got it — but he won’t be doing it even if he’s an option.

I got some steroid cream stuff for the burn. It seemed to help yesterday. Steroids, incidentally, help with inflammation. Which I simultaneously have but don’t have. Schrodinger’s inflammation? Or maybe a biopsy of an inflamed area would reveal why.

And we’ll get to last night’s talk with the sweet GP later. I didn’t tell her I saw this guy this early. I heard her use some colorful language when it came to ordering MRIs and why was she asked to when… Well, if they thought I had a TIA, shouldn’t they have kept me?

And I said, “Yes, but I wouldn’t have stayed. It’s not a TIA. I know this. This has happened before.”

She said, “Yeah, I know. I know. And… your microscopic urinalysis is back. And we have more atypical cells again, so… I mean… The  big thing is it’s probably not…”

Yeah, it’s probably not cancer.  It’s probably not my bladder. I’m guessing kidneys, based on the lovely flank pains I’ve had off and on since last fall.  And as I said to the dermatologist, “There are lots of things that can make your life miserable, or kill you, that aren’t cancer.”  Truthfully, this is sorta more what I expected. I thought since I hadn’t heard, maybe I dodged it this time around.

I assured her I wouldn’t buy any agricultural land before I see her Thursday.

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Surprise!

I got the call late Wednesday that I was seeing the dermatologist’s nurse practitioner in about a month and a half, and she’d get me in from there. The doctor was booked till nearly August. This morning I got a call and (surprise!) I was on the cancellation call list, so I was bumped up to see the dermatologist today. Okay.

Here’s what you don’t ask me: “How’s the rash?” Um… This is like asking me how my blood pressure is normally. Let’s put er this way, don’t feel badly if you need to check these things twice or three times during the visit, it changes that much. You probably didn’t do it wrong, and I’m probably not actually that high or low or whatever, but my vascular system likes to blow up and hide at odd times. The red, impressive rashy part has a real strong vascular component. I know this.

I guess this guy is also the pathologist, so, we’ll see what we see. Or don’t see. At least the right side of my face is numb still… maybe it’ll stay that way if/till a biopsy is needed.  Here goes nothin, anyway.

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Doing the Right Thing Is Dumb

Heh, no, it isn’t. But I called my sweet GP and left a message. I told the reception staff I didn’t want to make an appointment. Of course, when sweet GP called, she said, “I think you should go to the ER just to rule out a stroke. Or you could come in, but I’d probably just send you to the ER…” [in an ambulance, thereby adding to the drama… no. No thanks.]

Three out of four medical professionals can’t agree on what any sort of facial palsy/nerve malfunction acts like. So at one point, there was a doctor arguing for admission, because I wasn’t tripping over my lip, and the feeling of swelling (and it feels swelled) comes and goes. I have a droop that is more significant than the usual droop. It isn’t all out… well, jeez, you wouldn’t mistake it for a stroke,  nobody would, but you have to do due diligence and make sure it wasn’t with a CT. I didn’t think I was going to have jack explained by the ER staff, and I really doubt that I keep having transient ischemic attacks that just screw with my face. So I really was not okay with staying there for an MRI and MRA. I will probably end up with an MRI at least again. But I don’t need to be there.

I am in agreement (and I think he knew) with the physician’s assistant. He was thinking it might be more of a trigeminal nerve thing as opposed to a cranial/facial nerve, though when he squashed my trigeminal nerve it did something, it wasn’t the screaming pain he would expect. It wasn’t pain at all, actually. And yeah, they try to inflict pain. That’d be the part I’d like if it were my job.  It obviously is causing some drooping, though, so maybe there’s some other factor.

Also, I don’t have any variety of herpes, EBV, or staph. Or Lyme. Christ almighty, I don’t have Lyme. Again. Can we stop with the damn Lyme tests now? Please?

Blood counts normal enough, I guess, that I wasn’t going to spontaneously erupt in a fountain of purple goo, and my blood pressure was erratic. Yeah, well… It was actually a lot less erratic there last night than it usually is. No kidding. It was high, and also because they kept telling me they might need the neurosurgeon they wouldn’t let me have anything to drink even though I was more than due for a desmopressin. Dehydration doesn’t help blood pressure go down much. So my veins were hard to find, and the IV port killed even after it was in, and my fingers were unable to bend. I asked for a drink a few times, and the last time they said they were checking on my need for a neurosurgeon I told them that if I did, it’d be pretty damn certain that the water would be coming right back up, so don’t worry about it.

My oxygen saturation also magically drops into the 80s. When I laugh or talk and move at the same time.

But the PA knew the chances of my agreeing to stay were slim, so I was told to call the neurologist today. I guess I tell him my face is saggy, my nose and eye drool, and the numbness changes to a feeling of projectile eye/ear boogers when the PA presses my trigeminal nerve?

The kicker is I know why they wanted to keep me — same reason my sweet GP wasn’t hedging her bets. It doesn’t look like it’s going to kill me, but it’s now obvious that I’m not someone who falls apart in a predictable manner, and there are signs that are worrying enough. And no one wants to be responsible for bad things happening, but it’s really hard for someone to step up, coordinate, and make sense of it all either.

I figured I’d at least get some prednisone out of the deal — maybe it’d be a silver lining (and the immunologist even blessed that.) TIA Boy, MD killed that idea. I am sure it’d help the nerve, and I know it’d make me feel better. I might have actually been able to stop the downward slide of weight again. I’m three pounds away from hitting that “you look like you were released from a prisoner of war camp” look. It’s a fine line (those Portuguese genetics — I hide extra weight well, but when it comes off too much, a quarter pound is the difference between “thin” and “holy crap feed that girl”).

So what did I get for last night? A few bad IV punctures and some medical tape residue. Should’ve swiped some of those cleansing pads out of the latrine to get the residue off… My insurance is paying through the nose for it. (Did I just sound like my dad? Does Maine Med know where all the toothbrushes on the cardiac ward went last spring?)

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If You Can't Be Logical, At Least You Can Be Consistent

Last year, this time (remember back then?) my sweet GP handed me over to the Dorktor while she spewed out her last kid (she promised me, but I think it was less for my benefit than the fact that this kid was rough and she was calling it quits on that front). Now, the Dorktor was (is) a brilliant guy, and I seriously liked him — I mean, I’d like hanging out with him and I think we could have some awesome geek pissing matches — but I only got to see him a month or two before he was moved out of office hours into overseeing rounds for a medical school.

The Dorktor had an advantage in that he has seen a lot of stuff, and that he hadn’t seen me — but his not knowing me was also a disadvantage. Seeing and knowing are very different. Let’s put it this way — I am a lousy patient. I would be an awesome patient if I had something going on that was vaguely conventional, and the usual tests could back it up. Why? Because I really don’t notice stuff about me until it’s really wrong, and then I pretend I don’t notice it even more until it convinces me it isn’t going away.  But you can tell a doctor that till you’re blue in the face, and if they don’t know you and know it to be the case (like my sweet GP does) it rates right up there with people who “always have low body temperatures” and who have high pain thresholds. (I don’t know what I should say when they ask how I am with pain… I think my pain threshild is generally just completely irrational and wired badly, but that doesn’t mean it’s necessarily higher or lower. It means the goalpost is always moving when I kick at it.)

So there was confusion when the Dorktor pointed out that the right side of my face was sagging. As in, “Is her face always like that?” (How the hell could Mr. Shoe answer that one correctly? He was doomed.)  Of course, neither of us knew. Was it? My mom says I have always had a crooked smart-ass smile. Okay, she doesn’t say smart ass, she says “little.”  We all know what that means. And the Dorktor thought that it did vary over the couple/few months I saw him.

But I hadn’t noticed, and Mr. Shoe hadn’t really. Look, sorry, folks, it’s not like I spend hours doing my hair and makeup. I wash my face in the shower. And I comb my hair without my glasses on. And I’m out of there. But last year it did look creepy. I mean, creepier than I recalled myself looking. Then it looked less creepy come November, when the neurologist (who finally thought I seemed interesting later that winter) looked at it, and said, “Let me see your picture ID.” Well, I looked equally less creepy in the ID –in a picture taken over ten years ago. I had a smart ass, crooked smile.

Case closed. Dorktor was hallucinating. No one had noticed because my face was weird to start with. I don’t think that Dorktor is one to see things looking nastier on patients than they are anyway, so I don’t think he dreamed that up. But I didn’t feel anything weird…

So I’ve spent the last couple weeks wondering why it feels like I have shampoo, or conditioner, or boogers on the right side of my face when I’m in the shower, when I know I don’t. Hey, look, all bets are off now, and the consistency of Paul Mitchell conditioner is… well, mucous inspired. As I was drying off yesterday, I realized my nose, eye, mouth and ear on my right side felt like the dentist went crazy with the novocaine and I was cottony feeling and yet drooling out of all these spots.  Worse, my face felt heavy. Like someone shoved a roll of pennies in my cheek.

It’s also apparent the Dorktor didn’t imagine that droopiness, or the fact that it changed. Because I felt it first this time. Okay, I mean, I actually feel it this time. I had limited sensation last year, but none of the heavy feeling, or the occasional muscle fluttering on and off when I try to smile naturally. And my eye didn’t come open when I sleep. I don’t know if it actually comes all the way open, but as I drifted off a few times, believe me, the fact that it wasn’t sealing like the other as I relaxed woke my bad self right up. And that makes me think first of how pugs and pekingeses sleep with their eyes open, and then makes me think of Metallica’s “Enter Sandman.”

So if I try to smile (force it) I overcompensate on the right — and I can hold it. Same with the eye, so that at least I don’t get shampoo and conditioner (and, I guess, since we’ve already gone there, boogers) in it while I shower. If I act natural… talking, smiling, whatever, then it is noticeable.

It’s also heavy as hell. Did I mention that? Yeah. I did. That’s just weird. So here’s my thing:

I can’t see the dermatologist till I see his nurse practitioner, and I can’t see her till mid-June (and maybe she can get me in with him before August, but not likely).  He’s got nothing to do with this, of course, but I also don’t want to spend my time waiting on that end…  If it were cosmetic, who gives a crap, but his nurse practitioner can’t order a biopsy with cell staining and stuff. So I need to talk to my sweet GP about her third and fourth choices for who I should see (she prefers referring to specialists she knows personally, which is usually fine unless they’re booked till August). I was just going to call her, but then my face does this.

And I still can’t bring myself to call and tell her. How the hell do I explain this? I mean, it’s gotten to the point it’s completely unbelievable, and even though I have the context of it’s having been noticed last year (just that it didn’t feel like this), she wasn’t aware of it because… well, I took the cue from the neurologist and said it probably was just always that way, and maybe it hadn’t fluctuated. So I am hesitating to call her this afternoon and drop the “oh, yeah, and my seventh cranial nerve decided it’s tired and is taking the summer off, so I feel like I’m drooling out my nose and my eye is a little funny about closing sometimes” bomb on her. And it doesn’t look… well, it is noticeable. It is. More in the mouth and nose than the eyeball region, and I think maybe I only notice the eye changes because I am funny about eyes that are mildly off and it already feels like it ought to be off, so maybe it isn’t that bad there. It is off, I can tell you this, but most people who aren’t freakish about that won’t notice.

See, Marty Feldman had Graves Disease. That doesn’t phase me at all. I can identify right away what’s off about that. I had a specialist I saw who had a pug-like wall eye issue — again, very clear what was not uniform, and that could be tidily processed away.  But if it is a slight sort of thing — I get skeeved out and I can’t say why exactly, many times. Except this is my face and I can feel why.

I feel like I should actually see my doctor, then.  It’s not a nice thing to just dump on her over the phone (she’ll be like, “Get your ass in here!”) She’s not in tomorrow. Yes, I know her schedule. And truthfully, I can’t get in today, and I don’t want to until I know what it’s going to do. Will it reverse? Be more noticeable?  Give me superhuman abilities? I don’t know. I probably will by Monday. The immunologist is in tomorrow, and if I needed to I could give him a ring. Now… I know. This is more a neurology thing, but I figure that either specialist will just say, “Get your GP to send you to the ENT,” and I think we’re now all in agreement that the root of the screw up lives in my immune/lymphatic system somewhere.

It doesn’t look much worse this morning than it did last night, and it feels just as irritating. I also felt better (relatively speaking) yesterday than I did the day before… so maybe that was it blowing up big time. I feel pretty crap today, though, so maybe tomorrow it’ll be more interesting.  The issue is I have no idea where to go, or when to go with it. It’s kinda all hard to believe, and it sounds dumb explaining it, and I’m tired of explaining it. If it is something like a Bell’s palsy, they have been known to be seasonal. I think it tends to be idiopathic in those cases. Eventually, enough idiopathic stuff should point to something besides idiocy.

It is very consistent with the few things left on the table to consider.  It’s just bazillions of puzzle pieces that we have to put together, and no picture on the puzzle box to guide us. And to save my time, and my energy and morale, I don’t want to come in, have it not be terribly striking so that tests aren’t ordered that should be or have them ordered too early so that they aren’t re-checked if necessary later… Definitely will go to the ER if closing my eye really becomes an issue over the weekend, and will ring someone if tomorrow looks weirder. I probably ought to make an appointment with my sweet GP next week either way.

I like my doctor’s office. I just wish I didn’t have to see them all so damned much.

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Don't Drink the Water

I am going to have to hit Mr. Shoe up for the kick ass photo he took with his cell phone yesterday. Because of the massive water break out from the treatment plant, the area has been under the orders to boil water used for cooking and drinking. Evidently, in Massachusetts, “boil water order” means “we’re past the point of martial law, who the hell runs BarterTown?” Anyway, as Mr. Shoe had to go to the grocery store for stuff that wasn’t water, he got a lovely picture of the water aisle. Lonely, barren, empty, but for a cart pretending to be a tumbleweed.  I wish I felt good enough to go to the grocery store too (which is a pathetic statement, and please feel free to discuss the many reasons why amongst yourselves on your own time). I so would have found a box of Twinkies and stuck it on the shelves.

Double tap, folks. Always double tap.

So I’m sitting here, waiting for a few things… Mainly referrals, but also maybe the chance to pull together some loose ends. Like… Okay, in February — early February, the week prior to my surgery, I ordered a Chumby Guts kit.  Now, you may recall I have the original baked potato Chumby that I picked up a few years back. It’s just dandy. I thought it’d be cool to get its innards, and build one.  So they sell these kits and…

First off, the flex cable connector for the LCD was not my fault. The little LCD cable clamp mechanism on the motherboard was broken (I imagine the door/clamp and connector are assembled by hand, because it seems like a machine would be too likely to break it). I know I didn’t do it because I can’t see how it would have happened without it making a tremendous snap, or my losing an eye.  So I hope the poor hand assembler just didn’t hear the snap, and has both eyes still… Anyway, Chumby nicely sent a new LCD connector cable clamp. Because I suck at soldering, I just took the door off the new one and put it on the already-on-motherboard connector. That took coordination. And I had hyponatremia that week. That was just a whole lot of funny. I did get it together.

Rest of the assembly, really easy. Except it isn’t a good idea to solder right after thoracic surgery where they deflate your lungs and stuff. I think that’s why the solder let go right as soon as I got the completed Chumby Guts into the case I am building. The Chumby kit. however, took about 30-45 minutes (minus my crap soldering job time) once I got the LCD cable clamp in and shoved the cable well and truly up under the mounts. Because… the LCD cable slides a bit too much when you’ve wiggled the “tightness” out of the clamp.  But that was an issue that was kind of beyond my control, and it worked out.

Damned if I can make the case for it. It’s still sitting here, almost done. I will get to it. It is abundantly clear why I’m not an engineer though.

I am half avoiding finishing currently because I keep getting myself superglued into oblivion. And that’s probably not great for my skin or breathing. Mostly, though, it’s gone on so long I’m fairly sure the project will never end…

I also have people I need to get in touch with, but you know…Sometimes these word things are pretty inadequate.

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Your Moment of Pretty and Smart

Penny the pug looks smart

Since my brain’s switched off at the moment, I’ll just let Penny’s wisdom speak for me. She’s got a Nobel in smart you know. And pretty.

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