Maura's Illuminated Manuscript

I was over at the old place last night as usual, doing things in preparation for showing the house for sale in the next few months. This included moving a few boxes, sorting through a cabinet, being tall for my ex w.r.t. the living room shelves, and sitting on the floor in m'boy's room so he'd pick his stuff up off the floor. The last part was of course the most time consuming and contentious, because we're talking about my son, who doesn't like being reminded that he's a slack-ass punk little deficient in executive function.

I got him to make his bed, but I didn't know that he was supposed to use new bedding. The old bedding is stained, but I was loath to tell him to take it off given how cold my ex keeps that house.

Ex: I'll have to fix his room tomorrow.
Me: Get him to do it.
Ex: You can't get him to do anything.
Me: You can't just give up.
Ex: Why not?
Me: Because he's your baby and you're his mommy.
Ex: I'll send him to you. Maybe you can get him to do things.

I'm ready to be rid of both of them. There was a time recently when I thought I soon would be.

The backstory? My ex is really wound up about the impending sale. I mean, it's nice that she wants to maximize profit & minimize delay, and there's not a doubt in my mind that it'll work out fine, but it's definitely taking a toll on her. And it certainly doesn't help that her arthritis has been acting up and robbing her of sleep lately; this is probably related to the above.

I was supposed to go out with ack_yeahright last night, but her arthritis flared up, so I ended up stopping by her place instead. I can't help but compare her during an arthritis flare - pausing her game - to Nibs, whose tube is always on.

Stopped by elspethdemina's place d'emploi and, as usual, learned a whole bunch about sex toys, how to run a business, and how to run a sex toy business. Her passions for these things will be rewarded someday. Right? Right? And she has an impressive ability to resist being creeped out by her customers. Pity I'm too femme for her. I just sat on a chair with my blistered feed and recounted the soap opera that is my life. It's one of the few public places where I feel like I can talk out loud about anything without worrying, and the audience is first rate.

This morning is the start of a very long seven days for me, made necessary by Nibs' illness and the health care "system" in this country. But hey, it's only seven days. I've waited far longer for far bigger things.

My Burning Man campmate J had a birthday celebration at Canlis this past Saturday. I've wanted to go there for most of the time I've lived in the Seattle area, so I thought, 'Screw the expense.' Which turned out to be considerable, by the way, but not out of line, and I'll tell you why.

1. First rate food & drinks. (Try the Negroni.) I know what I'm talking about: Nibs the foodie and I used to go to one or two top-notch restaurants a year.
2. The view from the east side of Queen Anne hill is absolutely stunning.
3. Service like you'd expect to get in Japan. For example, the people working coat check & valet identify your stuff without any mechanical assistance.

I felt as if I'd impersonated the 1% at least well enogh not to get kicked out.

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Speaking of Nibs, she says her most recent kidney function test results aren't so hot, which could explain why she's been even more lethargic than usual. Her many meds are being rejiggered - no more Mobic, for example, which is the only anti-inflamatory that really works for her.

She is not allowed to need a kidney transplant or die. I was telling a co-worker the other day about what she & I used to have together, and how grateful I was that she isn't batshit and that we work together to raise the Wendling.

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Went to see Hunger Games with Nibs, m'boy, and Natasha yesterday. I haven't read any of the books, but the movie is as good as they say. There was a girl there with hair like the heroine's. It's been said: it's nice to see a fandom spring up around a girl who kicks ass for a change.

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In the restrooms of two local establishments now - the Wildrose and Victrola on 15th - I've seen stickers that say, in white lettering on a purple background, "TRANS SAFE SPACE / Leave your transphobia at the door." They're all official-looking. Is this the result of some campaign that I've missed? Yes, bathrooms are a huge issue with trans people; is that why the stickers were there? Who decided they should go there? And Victrola's bathroom is only big enough for one, so it isn't as if anyone's going to be in the bathroom with a trans person unless they're up to no good already.

It gets better. And more curious.

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I'm attempting to snap out of the post-op funk by getting more exercise: at least some - yoga, biking to the Abbey, non-dog walking - every day. I fell off the wagon when I went Full Time, and then I fell off a cliff right after surgery. If I don't fix that, everything else will be much harder. Mens sana in corpore sano.

Fun fact: doing stretchy bendy stuff really is better saved for early evening, or at least that's how it feels to me.

When I moved to a new office, I didn't adjust my desk until the next day and didn't figure out my umpteen-way adjustable chair until yesterday. You can guess the result: I messed up my neck and shoulder for the next ten days, enough to interfere with sleep and driving. Moral? Don't neglect ergonomics, even for a day.

Nibs, on the other hand, has just had the Bomb a.k.a. rituximab taken away from her by the FDA. It seems that at the higher doses at which leukemia patients take this drug, it can lead to a brain fungus (!) that produces symptoms not unlike mad cow disease (or Creutzfeldt-Jakob disease if you're anal like me).

Luckily, there are other drugs out there that have been approved since she started taking the Bomb, and she's switching to Orencia (abatacept), which requires more frequent but briefer infusions. The only downside is that it takes a few months (?!) to reach its full effect.

In the meantime, they're jacking up her dose of Mobic a little. Mobic is the only drug Nibs has ever taken that actually stops the damn pain, but since its action is so similar to Vioxx, the docs & insurers have been reluctant to give her enough to keep her pain-free 24 hours a day, until now.

ETA: Not a fungus, a virus. And more like Alzheimer's than CJD, said Nibs later.

As I type, my driveway (and an absent neighbor's) are full of four 96-gallon bins and ten big 2-ply paper yard waste bags full of the weeds that were in my yard this morning. That's at least 95% of the weeds that were in my beds when the sun rose. And I need a few more bags for the remaining piles.

Did I pull them all myself? Hell no. Nibs got the Temple B'Nai Torah mitzvah corps to come over for a couple of hours; she qualifies for their help, as they see it, thanks to rheumatoid fucking arthritis. Indeed, while they put in about thirty person-hours on my yard, Nibs was upstairs on a heating pad while I frantically bummed neighbors' bins and biked to the hardware store for bags. My yard looks fabulous now.

As I told the mitzvah corps, it wouldn't have happened, ever, without them. We don't have the money to pay people to do that, and when was I going to find the time? I can't count on substantial help from Nibs or my son. I can't escape the nagging feeling, though, that my yard isn't the most worthwhile use of their time. Besides, the reason why the beds got into this state in the first place is that we weren't keeping up with maintenance, and I'm not sure that'll change. As soon as we get the refi on the house, I'm ordering some bark mulch, which I haven't done in a couple of years.

They left the forget-me-nots alone. Nibs hates them. I like 'em. Awesome.

I've finished putting the final touches on my costume. Lessons learned:

• Pintucking is pretty easy, but if you're anal like me you'll want to mark where you're doing it, and far enough away from any edge.
• Narrow-gauge electroluminescent wire will develop shorts if bent too acutely.

I'll see you either at the Merc, the Metaphorest, or the Compound. The Hivemind party at Youngstown will probably be pretty good -- it was last year -- but I'm still trying to be frugal. Besides, three parties is enough even if I stay out later than usual.

I've helped my boy decorate the house. He still likes the little muslin ghosts we made three years ago to be hung from the kitchenette ceiling.

Nibs got cortisone in her joints Monday, she'll be getting more thyroid juice, and she's trying to get insurance approval for a higher, less-safe dose of meloxicam (Mobic). She says that higher dose, which she had to discontinue when its cousin Vioxx was yanked off the market, is the drug that's worked best on the pain, and risk of sudden death from heart failure be damned. Am I cool with it? You bet.

Work. Get wet riding bicycle. Do housework. Herd kid. Circumflatulate on pooter. Read. Sleep insufficiently. Lather, rinse, repeat. Yeah, I think I'm ready for a shakeup.

So I nip out to send a certain vicious and unnatural airman off to Iraq properly, and like the good do-bee I am I come home at 11:35. Her Nibs stays up working for another hour or so, putting us both in cranky zombie mode this morning. Why, you may ask, didn't she do what she needed to do earlier? Repeat after me: rheumatoid fucking arthritis.

She's hurt her shoulder pretty badly, probably from carrying that handbasket full of books the other night. Yes, I carried it once she brought it to me, but she spent quite a while filling it to the brim out of my sight. Who knew?

I finished huffing paint fumes last night, and in the process wore myself out to the point of crankiness. Having a Nibbal Unit on the couch as usual with unusably sore arms wasn't exactly good for morale. Things need to improve if at all medically possible, and I told her so. She doesn't share my sense of urgency, but in fairness to her it looks like if she wants to try one of the experimental meds, she'll have to get off drugs that we know work more or less for several months. The study she's looking at participating in isn't the rituximab B-cell smackdown I've mentioned, but an interleukin 6 study that starts earlier and isn't as scary.