So I’ve been meaning to update you fine folks, but the universe has been especially indifferent about things here. This means a couple of things: I feel crappy and most of the time by the time I boot the laptop I either make no sense or I can’t remember why I did so to start with, and the laptop’s hard drive, which has been feeling rather crappy as well, finally up and went.
I replaced the drive last night, and at least the laptop is much happier. Hey, I take what I can get. Plus, 2.5 inch hard drives are the friggin’ cutest little things.
I ended up taking a few pictures (those of you that got some mailed, these make me look less shitty… well, this camera is kinder thanks to lower resolution — same sort of reason no one wants to watch porn in HD folks — and the light was kinder.) This is one where I don’t look so bad, or even too sick courtesy of my gaze being diverted by a pug.
The pug was incidentally very bull that I kept setting the timer on the camera and then getting up right when she pounced on me. Why? Because mama is awesome.
You heard it here folks.
Anyway, I am glad I got those pictures. One, my mom knows I didn’t use a garden weasel really now… and because it’s really fallen out. Well… yes and no. Let’s put it this way, and warning, it’s all gonna get gross. I noticed later that day I looked blonder. And my shirt was covered in a gold residue. I thought, wow, it’s raining precious metals!
Yeah. And the next morning, Mr. Shoe said, “You are missing hair.” No duh. But I was. See, like, in spots. Not diffuse, like it kinda had been, like it does when this flares up like it tends to, but in dime or penny sized (the coin, not the pug) spots. And I am kind of… well, it’s cool because my skin feels pretty velvety.
I also ended up making Mr. Shoe take Penny to the vet because I thought something needed expressing. Um, yeah, that would be the spots where my hair is falling out, not Penny’s posterior. My dog was probed by the vet because I… smell.
Honestly, I am really glad I cut the hair, as now I understand why it was driving me batshit.
For those following along (you brave souls) I am headed off to MGH this Wednesday. Gird your loins for me (mainly because prayers and positive thoughts just seem to get me the sort of attention from deities I don’t really want). The bad news is I feel like hell, and it’s gone downhill greatly since about a week and a half after I saw the neuro here (so since early June). The good news is… well… I am showing all those quirky things that come and go and are sort of borderline there all the time in the nastiest way. The skin, of course… and the blood pressure spikes, and the walking into walls, and… we won’t talk about my neck and hard palate and face. I am sure my droopiness is due to swelling… and since the neuro did spot the cyst and specifically looked for (and didn’t see) any cranial bone issues, I am guessing I either have a lymph node or salivary gland that are being asshats.
Best I can tell, that’s not unusual for what they suspect, nor is it necessarily a bad sign. I mean, I hope it isn’t a skull problem… that would be a nastier problem to tackle. Okay… it’s all nasty, but some things are better than others.
I can tell you this: At this point, it doesn’t matter much. I mean, I think Mr. Shoe and I are both pretty much sure that the local neuro is spot on with the general sort of disorder, and Langerhans’ Cell seems like it is consistent (but the kicker is they all kind of overlap). And I think I’m going to end up going in, and getting a good look at just about every damn bit of me, and treated like they treat people with this stuff. Of which there aren’t many. Um… Well, there are far fewer kids than I’d thought coming through, and adults… they tend to follow kid treatment protocols except that adults seem to not stick in remission all that long and it can kick your ass really hard when it comes back either way. I mean, fine, still not malignant, but it’s not like it has really frickin’ good intentions, either, so they tend to smack it real hard, back off after several months a bit as much as possible, and follow and re-assess.
I think probably the worst bit is that unlike my sweet GP, most doctors don’t ask what the hell it is… I love my sleep doctor, and he kind of thought he knew, I think, and it was obvious he guessed wrong. That’s a hard thing to deal with, really. They don’t teach this in medical school, cause it doesn’t happen that often and you know… you only see it in certain populations. Except when it is elsewhere. This little explanation puts it nicely. And so far… Well, let’s all be girding some loins on my behalf this week, shall we?