2 Updates, 1 Week, With Less Cringing Than Other 2 and 1 Combos

Well, less cringing for you, maybe.

One of the things Dr. J was trying to coordinate as we wait for my Boo Radley cells (sometimes I call them Lenny cells… they mean well, the friggin’ morons. They want to kiss me and hug me and call me George and pat the bunnies of my… connective tissues and internal organs and curl up in epithelial pockets…) to reveal exactly what they are, what they plan to do, or what they’ve tagged along with, was some help in whacking symptoms and such (and possibly even revealing more about the nature of these histiocytes) with another specialist or two on board. The idea being we watch the overall picture, seeing as the rate of change varies, but is fast enough, thanks, and deal meanwhile. The problem being — we weren’t — any of us — sure exactly who is best to see. Not just names of doctors who are willing to deal with this can of worms, but even specialties. Dr. J has done this enough (despite the less than usual nature of these things) and god knows I have done this enough to know that it’s easy for a specialist to say, “Look, it isn’t based in my preferred organ system. Get bent.”

We know it isn’t. We know vaguely, at least, what is likely causing this to go haywire. It’s just not clear right now to determine what to do. Finding people like that takes time, and the sad fact is I’m so motherfriggin’ sick of waiting. I mean, I know there is nothing at all that anyone can do to make this go faster. It’s not like anyone is willfully holding back help. It still is annoying.

Tapering off the prednisone… Uh, yeah. I thought it must be helping a little. Well, okay, in the beginning there was that boost of cortisol energy. That rocks, especially when you have no energy and that at least lets you do stuff like… sweep and mop the floor in the same day, even if it means you have to lie down the rest of the day. But that wears off. And now that I’m tapering more and more (I should be off by Tuesday, but I’m actually going to have a few left over, which I’m going to cut into quarters and take for another three or four days I think… I know the last step is a doozy, and I’d rather make sure my adrenal glands are really ready to work after that last crutch is taken away)… I realize that it wasn’t doing much. I thought it was helping something more. I feel just as shitty.

I know the swelling won’t go away immediately, but let’s put it this way… I knew some of it that was being credited to prednisone was not from it. I lost my scary Eddie Vedder/Mickey Rourke muscled cheeks thanks to prednisone (that was awesome) and maybe that made my eyes look funnier… but I knew that my eyes were getting swellier and swellier over the past… well, since May, at least. My legs, too, especially the left foot. But I think without prednisone I might be able to wear socks again most days.

My cheeks are returning to normal, my eyes are not. It is rough, as my right side is kind of saggy anyway, and so it is hard to tell sometimes what is wrong. Both areas around the eyes are puffed, really puffed… but my left eyeball is pushed forward. It’s wickedly creepy. I’d take a picture, but it’s still slight enough that the angle would have to be correct and it’s really creepy. It is not dramatic, for sure. It’s probably harder to see because of the asymmetry to start with. It’s a lot easier to see now that I have scary cheeks again.

Yeah, I should get that looked at. Pffft. I mean, I know Dr. J did sort of notice. And I should get my head re-MRI’d. It’s a little early. It’s probably called for. And hell, I’m getting the one year thymectomy CT this month. It’d be nice if some of these tests could be consolidated. What am I saying?

I don’t want to wait around to find out what this is going to be because I suck at acknowledging stuff. Oh, look, my eye is hanging out. Shove the bastard back in and get on with it… I don’t want to go to the damn doctor. I’m busy doing… well, I can’t do anything cause I feel crappy, but I don’t want to go to the doctor.

I totally need some diabetic socks though, I think. I don’t know why I’m having a brutal time finding them, but I seem to be. I also need some place that’ll sell me a left shoe in wide and and right one in normal width.

Mostly disappointed the prednisone really did zilch. I think what might help me most (and won’t happen, cause it can’t) is to have a daily IV of whatever that shit is they give me in the ER. I think it’s just mainlining Gatorade, truthfully. I also think a small, PRN oxygen tank might help for those moments that blood won’t circulate right. I know it won’t stop the course of the problem either, but the weird electrolyte crap and the oxygen saturation screwing with stamina and internal temperatures and stuff are a lot more annoying than any pain or whatever. And more stamina and a better electrolyte balance does seem to help my brain out. Not a whole hell of a lot, but those things annoy me most.

Know what else annoys me? Kernel panics and spastic trackpads. Or maybe WordPress is spastic. I’m about to use today’s two ounces of energy to go see if my damn laptop blends, if you know what I mean. Later, guys.

This entry was posted in Langerhans Cell Histiocytosis, Living with, The Bad, The Good, The Ugly. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>