A Real Update, Sort of

We’re now pushing a week with the prednisone/prilosec plan of attack. I just started the antibiotic last night. Evidently there’s a sulfa drug that is used more often for this sort of thing… but it strikes me as exceptionally odd as I know a million people with sulfa allergies (no, seriously, a friggin’ million!) and I imagine that there have to be people on chemo or with HIV or whatever who actually also have sulfa allergies.

Anyway, the pharmacy had a wicked time finding this antibiotic, and truthfully, I was getting a little uneasy about the whole thing. The idea is to ward off this particular pneumonia that likes compromised immune systems. I guess it is a fungal based pneumonia. I haven’t a clue, and I imagine it still is fairly unusual, but… dudes, you have not seen our shower tiles up close and personal. I harbored some fears, that’s all I’m saying.

Anyway, got the antibiotic last night. The package insert was quite fascinating. I think it was because it’s the usual sort of “if your start bleeding out every orifice, call your doctor immediately” stuff… and every last side effect was tempered with the phrase “unless this is directly relational to reactionary leprosy.” This stuff is used to treat leprosy, as well — I am assuming humans get a different dose than armadillos.

I can say this: I suck. I mean, this is better than it was. I just realize now that I suck, I did suck, and how much I was sucking and didn’t realize. I am taking 60 mg of prednisone, and the good news is the cortisol effect was immediate. Hooray stress hormones — and I mean that. I still have to take both forms of stimulants, but I am able to take one or two fewer Ritalin PRN since starting the prednisone, and the awake factor feels a lot more natural.

I am also all too aware of how shitty I feel. I mean, I wasn’t. I couldn’t be. I wasn’t alert enough to waste the energy having it register. And there’s the annoying shitty… my skin is just disgusting. I swell up at odd intervals (usually neck, cheeks, and calves. Damn my calves!) and of course my feet… but I think that’s not quite the same process. There’s the regular old joint pains that are quite ignorable.

Then there’s the stuff that is worrisome, I guess. This is the stuff that tends to get pushed out of the way still thanks to the constantly annoying aspects. Please note this has little to do with exercise or being in shape or whatever — I might be able to take a flight of stairs at a run with no issue. I might get winded and have my extremities and face turn purple trying to put a sock on, and then the cough. These things might happen within a half hour of each other. It’s just… I notice that I am not as able to do as many “flight of stairs” without some sort of repercussion. This isn’t new, I know it. I think I’m just finally seeing it instead of stuffing it down.

I think that at least the prednisone is making peeing easier (sorry, folks, I’m sharing. And I am the queen of starts and stops and starts and stops.) It’s not making me any more goofy than usual and I imagine that the food response will kick in, but right now, I kind of just feel like barfing all morning (I do eat with this stuff, of course, or I would be barfing) and by afternoon I can sort of eat, but for some reason, I randomly will find that whatever it is I’m chowing down is just really unfriendly. And it can be fine the next day, or later on, or whatever. It can be the blandest food in the world. So either because I feel barftastic, I can move a little bit more, or because (this is my actual bet) I can pee almost normally, I have lost a few pounds since starting it. While it makes me uneasy, it isn’t totally alarming, either.

I half suspect I might have some sort of adjunct therapy stuck on in January. I imagine that this may have been an act of kindness to get me through the holidays without my being a big friggin’ party pooper (and I appreciate this greatly, because it was getting very old to be the one that holds it all back). I think the response seen by that point and blood levels and such might affect how we proceed or if we just keep proceeding. I kind of thought by this point I’d actually have some reduction, however slight, in pain level or even my breathing issue (intermittent as it is) but not so much. That kinda sucks. It is still really early, I’ve been like this for a long time, and truthfully, combination treatments seem as though they are used more often… but it’s a weird time of year, I have a lot of crap to wrap my head around anyway at the moment, and maybe a stab at the beastie with a known quantity therapy for the first few weeks would be a wiser, gentler approach. Or at least give us some hints into how I might do.

I feel… different. I mean, it is better. I hate that disconnected, not able to think side of things. I also hate that I am realizing how limited I am physically thanks to the non-thinking factors, but they’re still easier to deal with. Give me a brain, I’ll entertain my little self all day long.

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