sistawendy: (blue corset)
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.
sistawendy: (contemplative red)
Several days ago, m'boy reminded me that the first night Passover, with its attendant Seder feast, was to be last night. I asked him if he wanted me there, and naturally he said yes. Since my Aspiring Ex is in charge of the cooking, I made sure to ask her if it was OK.* She said sure, if there was going to be a seder.

I found that shocking. You see, my AX lives to cook, and has ever since I met her. She's a Yiddisha mama: she expresses affection for people by feeding them. She's quite proprietary about her kitchen and justifiably proud of her cooking. And she's a more-observant-than-average Jew, so for her to consider not cooking a Seder means something is seriously wrong. It had never happened before.

She was indeed not feeling well, for the drearily usual reason: rheumatoid fucking arthritis. She just had an infusion of gee whiz "biologic" drugs on Thursday, so I would have expected her to be OK in time. She was, mostly; the matzoh balls, desserts, and gefilte fish were hers, but I brought the chicken from PCC.

At one point in the Seder, our lefty liberal Haggadah urged us to tell what imprisons us. Well, you regular readers know the answer: AX herself. I tried to put it delicately: "You need to be self-sufficient."

"Ha," said my AX. "As if that's ever going to happen." Or words to that effect.

We're screwed.

There was one moment of levity: in the passage describing (I think) the Hillel sandwich**, the Haggadah used "constriction" and "sweet" in the same sentence. I said quietly, looking at AX, "Constriction can be sweet." If looks could kill, I'd be in easy-to-carry sections. Neither her father nor my son noticed.



*As any Jew knows, it's perfectly acceptable to just show your butt up to a Seder even if you don't know the hosts, provided you don't mind being likened to the prophet Elijah. AX's aunt once had a drunk neighbor show up to a Seder, and being dutiful Jews, they did not turn the neighbor away.

**Charoset and horseradish between two pieces of matzoh. Go and study it.
sistawendy: (stern nun)
I was supposed to go out with [livejournal.com profile] 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 [livejournal.com profile] 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.
sistawendy: (eek)
I've moved back to Seattle. Much thanks to [livejournal.com profile] apestyle and my son for helping me with the furniture.

By the numbers:
Trips across Lake Washington in a rented van on Saturday: 2.
Meals I ate at Beth's: about 0.75. They're huge.
Amount spent at IKEA yesterday: $632 and change.
Hours late to walk Bigpuppy because there is no such thing as a quick trip to IKEA: 1.5.
Value of IKEA items accidentally destroyed: about $25.
IKEA items assembled last night: 3.
IKEA and other items remaining to be assembled: 3.
Number of circuits of Green Lake walked: about 0.5, round trip, in a glorious sunset.
Bins unpacked so far: 3.
Bins left to unpack: 13.

Today was my first day at the new job. I have to say, I've gotten farther in one day here than I did in one week at PrevCo. People have been helpful. I could weep for joy.

I've discovered that I have a nasty situation, though, regarding Nibs and (What else?) health insurance. Because of the gaps in the coverage dates, I need to buy COBRA ASAP if I want to avoid sticking her with a three-month approval process for pre-existing condition. Remember, she needs those infusions every four weeks or she's an invalid. At least now I know the dates that COBRA has to cover, and I can buy it retroactively.
sistawendy: (skeptic coy Gorey tilted down)
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.
sistawendy: (contemplative red)
Nibs told me a couple of days ago that her liver and kidney function tests have been so bad that she's being taken off methotrexate and Mobic. Her rheumatologist is even wondering if she has the same rare liver disease that her mother does: autoimmune hepatitis. She tells me that she'll be awake for more of the day than she currently is (which is about twelve hours), but she'll be in pain whenever she is awake.

I instantly thought, 'Good. She'll be awake more. I can talk to her in the middle of the day when I need to.' And then I remembered that that's evil.

Yes, to a considerable degree I've tied my life into a pretzel for her and will continue to, projects aside, for another three years or so. And you know what? I don't regret that. I have a feeling I'm about to regret it even less.
sistawendy: (smoldering windblown Merc alley)
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.

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.

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.

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.

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.
sistawendy: (hopeful nun)
Nibs has settled on Wednesday night, one of the nights I come over, as her night to go out, usually with Natasha*. Last week, Nibs said she'd be back at 9:00, but we didn't even hear from her until she got home at 11:00.

That didn't bother me; I just chilled with a new copy of The Economist. My son, however, wigged out a little and wouldn't go to bed.

I told her what had happened when she got back and didn't think twice about it, until last night. He told me over the phone that he wants to go bowling, see, and of course that means bowling with both of us, even though Nibs is arthritic and can't participate much.

That's when Nibs said something astounding: "He needs to learn to do things without me." Like bowl, sleep, eat, etc. I never thought I'd hear her say that. Our boy is going to be fourteen next month, so it's about damn time.

Dare I hope that this means Nibs is rediscovering life, i.e. life off the couch and outside the house? That something good for her has finally come of my departure?



*Code name for our son's first babysitter and close family friend for most of m'boy's life.
sistawendy: (weirded out)
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.
sistawendy: (blue corset)
My spuds in the trash can are dead, killed by the heat. They were doing really well until then. The memorial service will consist of emptying the can out and drying the soil, and hoping they haven't all rotted.
I've been ironing dozens of name tags onto my son's clothes before sending him off to camp tomorrow. I hate to say it, but my mood's about to improve markedly. He's spent most of the last two months unmedicated so he can eat & sleep.
Nibs gets Bombed tomorrow, and hopefully starts moving around more shortly afterward. Thanks to better health insurance, she's gone from every six months to every five.
sistawendy: (contemplative red)
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.
sistawendy: (dolly)
Yes, I had a fabulous twelve hours at Norwescon, but first this: Nibs had to get examined for her SSI application. It just so happened that the office in Federal Way (?!) where it took place is in the same strip mall - 2200 S 320th ST - as a good-sized Korean supermarket a la Uwajimaya. Let me sing the praises of the wonder that is Paldo World! An entire large fridge case of dried squid & cuttlefish! (If it's dried, why refrigerate it?) Tens of aisle-feet devoted to chili paste & powder! Tea in boxes with silhouettes of naked chicks on them! Not one but two restaurants, which my son wants to visit if he earns the privilege. My son & I were the only non-Koreans in there for a while. For a side trip that I thought was going to be a drag hanging out with my bored son in a waiting room, that turned out rather well.

And now for the twelve hours of Norwescon, made fabulous by the generosity of [livejournal.com profile] alexiarnps, [livejournal.com profile] grace_batmonkey, and [livejournal.com profile] beaq. For all of you who I only saw for a few minutes, I would love to have had more time with you, but you know how it is. Nibs & I agreed that I'd be home by noon, but I cabbed it home before 4 a.m. so I could log into work at 10:30 or so. That turned out to be a smart move on my part. The highlights:
  • There were a few of you with whom I did get to spend some time.
  • Goth babies! That sounds like they're the new doll craze. They're not, but they ought to be.
  • [livejournal.com profile] icprncs taking an 18th century look two feet over the top, literally. I hope that wig & bicorn hat didn't give her a headache.
  • Seeing a girl of about 13 do a double take when she realized the nurse from 1913 wasn't quite as she first appeared.
  • Running into a doughboy and a nurse from 1937 at the same time. Costume synchronicity!
  • Eye candy. Dear Bob, the eye candy. And at Norwescon, one need not be ashamed to be constantly looking out of the corners of one's eyes because everyone's doing it.
  • Meeting people who had previously only been imaginary internet people.
  • A particular room party that lacked in size, thanks to the Man, but more than made up for it in ahem.
sistawendy: (dolly)
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.
sistawendy: (smoldering windblown Merc alley)
Mm, Pfaffaffaffaffaff. Mm, hardware firewalls with VPN pass through. It beats my software firewall soundly. (The hardware firewall is actually part of a wireless router. Note the foreshadowing.)

Took yesterday off because it's spring break and the Wendling's home. Despite the gorgeous weather we had to skip the cherry trees for now because he's sick. Aww. Appalling timing.

Chronic illness is getting Nibs down worse than it has in years. I wish I could go "Zoot!" and undepress her. I never know what to do around depressed people. Come on, rituximab.
sistawendy: (cartoon)
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.
sistawendy: (bluecorset)
Another neighbor tells me that part of how he got cranky is by taking care of an ailing wife for years, maybe decades. Oh, man. I'm in danger of turning into somebody I can't stand.

Poor Nibs.

Nov. 14th, 2005 04:18 pm
sistawendy: (bluecorset)
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?
sistawendy: (lizzy)
Arthritis attacked one of the Nibbal ankles, so no Seattle fireworks for us. I'll grudgingly admit, though, that Kirkland puts on a respectable show for its size. The Wendling insisted that I keep my hands clamped over his ears the whole time. From where we were we could see fireworks for Kirkland, Mercer Island, Eliot Bay, and Gas Works. I still want to do Gas Works with my boy, though. 'Cause you gotta.

boom box - working CD player + casette adapter + iPod = unlimited tunes for Wendling. Go go gadget Daddy.
sistawendy: (cartoon)
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.
sistawendy: (cartoon)
I've been gcc's bitch for a while. It talks dirty to me like this:
undefined versioned symbol name std::time_put_w@@GLIBCPP_3.2
Not quite the scene I had in mind.

Her Nibs has come to a decision regarding meds.
Step 1: replace Humira with Enbrel, another monoclonal antibody drug that's on the market, on the theory that she might have developed antibodies to Humira. (Interesting that you can apparently develop antibodies to antibodies, no?) If that doesn't work...
Step 2: the big bad rituximab. After talking to her rheumatologist she's decided that the risk is low enough. I'm relieved, and, yeah, feeling a little weasly about it. She was amazed at how everyone refused to give her advice about this, to which I respond, duh. Nobody else feels what she's feeling. Who is anyone else to judge whether it's worth the risk?

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