Jan. 14th, 2017

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I slept in until 5 AM. This is unprecedented. Mentally, I feel fantastic. Physically? Well, you know how I said I wasn't a graceful person, and me passing out (especially because of my extra clumsiness) runs the risk of hitting something on the way down and hurting myself?

Yeah, there was a 30 minute period or so sometime in the night that I was awake, because I'd gone to the bathroom, passed out, and somehow hit the toilet with my back on the way down. Better my back than my face, but now my back is in incredible pain. I'll be hobbling around on a cane for a day or two, that's for sure. It seemed like it took forever to completely "come around", even with Jesse practically carrying me from the bathroom floor to the bed.

Disorientation is a bitch. I wasn't even sure where I was at first. I've passed out before, but somehow mixing the pain of hitting the toilet made everything even MORE confusing upon coming to.

Still, I somehow managed to sleep after that. Slept regular-human-hours. If you're a morning person, at least, to which I am. 5 AM is my sweet spot, my perfect wake up time. It's early enough to be able to catch the sunrise no matter what time of year. It also gives me a few - if not several - hours of quiet time, as Jesse (and all my lovers) are night owls and can sleep till noon.

I'm one of those people who cannot STAND noise when I'm waking up. Not music. Not movies. Not youtube videos. Not anything. The sound of rain that we use to sleep is as much as I can handle. Otherwise, I need near dead silence. This seems to be a rarer trait, as almost everyone I know turns on the computer/tv/etc and starts playing sound within minutes of waking up. Me? An hour of silence, bare minimum, and two hours preferred.

They say it helps wake them up and intellectually, I can totally see that. But for me, it crashes into my concentration like a four ton truck into a pane of glass. It makes me feel fragmented, somehow, and unable to focus for the rest of the morning.

I just realized how often I use the word "somehow." Maybe I should shake that up and hit the thesaurus sometime. It is, after all, one of a writer's best friends. I use it, but it usually takes a while to notice that I'm reusing the same word over and over again. Writers - very good at taking in details. Sometimes terrible at recognizing word patterns in our own writing. Maybe that's just people in general.

I've been trying meditative and grounding exercises the last couple of days. Small things, such as focusing on my breathing and repeating a mantra when I'm trying to sleep ("stay still, stay silent"), or by doing the "5 things I can see, 4 things I can touch/etc" thing. I'm not even sure what I'm hoping it'll help, except that everyone else says it helps, so I'm gonna give it a whirl and see what the fuss is about.

It's definitely going to take practice - it turns out my mind is noisy as fuck and requires constant, active re-steering to the meditative exercise. But I read somewhere that this is common - most people's heads are louder than they think and so it just takes practice.

I also tried some active positive thinking yesterday. I didn't get very far because I see very little that's positive about all this. I did come up with two things, though.

(1) I am eating the healthiest I've ever eaten. While my body doesn't always think so (or at least the way it RESPONDS), I've given up fast food and many pre-packaged foods. Even if my body decides to throw a tantrum over half a turkey and avocado sandwich (which it did recently, for a full six hours afterwards), I'm STILL eating better than before.

Cutting out fast food itself is astounding, as I'd been eating it several times a week before I got sick. I mean, I love fast food. Love it. Loooooove it. I am totally, typically, completely American in that sense. I nursed on the teat of McDonald's Golden Arches and could not ever seem to get enough of it. I was boorishly in love with it. So even if my body thinks that a handful of chips is a bad idea, I still KNOW, FOR SURE, that I am eating healthier, if nothing else through not eating fast food.

(2) I've lost weight. I was 140 when this all started, now I'm down to 130. The edema and loose skin of ballooning up to nearly 200 pounds breaks the smoothness of my abdomen, but hey, not a soul besides Jesse will be privy to seeing it.

Never get between a woman and her vanity, no matter how petty or small it may seem. I feel skinnier, and by god, as a typical American, that feels pretty damn good.

But that's all I've been able to come up with. I think the idea isn't to find positive things ABOUT the disease, but positive things AROUND it or BECAUSE of it. And so far, those two are the only things I can see as being even remotely "positive".

I guess if you count "frighteningly aware of your own mortality", that makes a third thing to be grateful for, kinda, sorta. But idk - I kinda liked the whole "ignorance is bliss" thing when it came to my body. That won't work anymore. Ignoring this will not make it go away and it won't kill time while I'm waiting to heal.

I once broke my foot - my ankle AND several top bones. (Found that out years later at an urgent care clinic where they had to take an xray.) I ace-bandaged the shit out of it and kept working my housekeeping job, which involved three stories, a heavy and ancient vacuum cleaner, and no elevator. I just ignored it until it went away. Wasn't easy. Wasn't fun. But I had no health insurance and didn't want to go to the ER. And everything healed mostly right. There's an occasional tremor on my ankle, but overall, ignoring it worked.

Ignoring lupus and kidney failure will not work. That's what got me to the point of this being as bad as it is. I'd had health insurance for months before I went to get checked out, even for a basic physical. It was only when I started to lose my hair that I made an appointment. (Like I said, never get between a woman and her vanity.) If I'd gotten in sooner, I'd still have lupus, but I might have prevented the kidney failure.

Shoulda coulda woulda, right? My goal today is to not fight my symptoms, but to simply accept them and try not to attach moral judgement to them. So if I lay down for a six hour nap, I'm not "lazy", I am letting my body "recuperate." If I throw up three times today, I am not "weak or badly doing my diet", I am instead letting my body tell me when it's had enough of something. If I pass out on the way to the bathroom (because by god, everyone's got to pee sometime), I'm not "pushing myself too hard". I am instead simply experiencing withdrawal symptoms of Prednisone, which is a set of symptoms I have no control over, and thus cannot take any blame for.

Stuff like that. Far, far easier said than done. But practice. Practice, practice, practice. It'll sink in eventually.

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