"In Iran, we don't have homosexuals"

Ahmadinejad: In Iran, we don't have homosexuals like in your country
America: LOL

Empanadas de Alcayota!

Somewhere along the way my weekends turned into Insane Cooking Days. I spend almost all Saturday and Sunday cooking. Now, this doesn't mean I come out of it with enough lasagnas to build a fort, or with piles upon piles of delicate pastries, or anything of the sort. Because it's so difficult to stand up and do things with my hands, it takes me a while to make anything.

This week we made humitas and spaghetti squash preserve (dulce de alcayota). Thing is, I couldn't remember what all the spaghetti squash stuff was used on. I mean, you can use it as you would jam, but with just the two of us--and really, probably it's just going to be me eating it, because MrSporks makes confused dog-tilty faces at it when he walks by--I needed ideas.

I found this recipe for empanadas de alcayota--empanadas with spaghetti squash filling. I remember these being very tasty but also pretty rich, so they were small. I'll try to make it this upcoming weekend, and see how they turn out.

NPR : Get Out Your Handkerchiefs for Chile's 'Cueca'

NPR : Get Out Your Handkerchiefs for Chile's 'Cueca'

Bafochi
Originally uploaded by Alejandro - Pérez

If there is one thing I might call a regret from my wedding, is that I didn't get to dance a cueca. Maybe I'm getting to be a sentimental as I get older, and maybe it's inevitable for the patiperro to get nostalgic, but this year's Dieciocho had me longing for empanadas, pan amasado with chancho en piedra, some manjar, and a good cueca round. Not that I could dance in my current state, but irrational longings don't seem to care about these things.

As it turns out, "cueca" apparently also means something to do with being in your underwear (in Portuguese maybe?) so in my trolling for dance pictures, I got a number of not-quite-safe-for-work pictures of people in their undies, and a lot of pictures of kids with underpants on their head.

Once I made my way through that, I found a lot of pictures on Flickr, and a decent number of videos on YouTube, too.

Bailando cueca en el desfile militar
Originally uploaded by Gabriel Ortega Berger

Cueca is the national dance of Chile. What's cool about it, is that everyone dances it. Looking through YouTube or Flickr you'll find lots of pictures of people in traditional costume, but also just people in everyday jeans. And, it's a fairly complex dance: there's a set order of moves--figure eights, turns, and demilunes, plus you're supposed to hold your handkerchief a certain way, etc. Of course, it's not rocket science, either, and not everyone does it just so, but still, September arrives, and the whole country must dance.

Bafochi
Originally uploaded by Alejandro - Pérez

There's several styles of different traditional costumes you might wear for this--varying by region, wealth, and so on, but the most common is a huaso (cowboy) with manta (poncho), chupalla (straw hat), and spurs, and the woman in china garb--a simple flowered dress (pictured right). I never much cared for the flowered dress style; partly because it'd make my butt look like a giant cabbage, and partly because people keep starching their skirts and adding layers upon layers of cloth, which doesn't look right to me. A traditional china dress is simply a humble flowered dress (like the one in this video). I preferred the solid-colored, straight skirt and boots (with spurs--no idea if that's traditional or not, but dammit, if I'm gonna put on boots for dancing, I'm putting on spurs) style (pictured left) all black, or black skirt and red jacket.

This afternoon, NPR ran a piece on the dance. MrSporks and I were in the car, and every time a Chilean spoke, he giggled.

"Your people can't pronounce the letter S," he told me when I poked him.

"S is for Commies. La ese es para comunistas," I repeated. Of course, in a Chilean accent, this comes out "la ese eh pa' comunihtah." He wasn't just picking on Chilean speech for no reason: we're notorious for dropping letters, speaking machine-gun fast, and aspirating our S sounds.

At any rate, the piece mentions the breadth of subject (protest, raunchy, traditional), cueca brava (a style influenced by brothels and the criminal underworld), and La Yein Fonda (a play on "Jane Fonda"). Unfortunately they don't touch on the cueca revival of recent years, and there are no web extras (video, sound, or pictures), but being that more often than not the country is altogether forgotten (current issue of Gourmet, which is dedicated to all things Latin American, mentions it in passing once, I think), it was a pleasant surprise.

Edit: blergh, for some reason, Blogger is eating the captions on the pictures crediting the photographers on Flickr. Click on the picture to visit the original.

kindergarten 1, calculus 0

12:57 <Syd> doing the best stuff here
12:57 <Syd> we print out 24x36 hard copies for county records
12:57 <Syd> and I am folding them
12:58 <Syd> kindergarten: still proving more useful than calculus

"Have you got anything without Spam?"

So, reading a bit about Rituxan, the new drug my rheumatologist wants me to start on, makes me feel like I'm in the Monty Python Spam skit. Except replace "Spam" with "death". Which is less funny.

As I make my way through various arthritis drugs, the side effects get nastier and nastier. I'm sort of scraping the bottom of the barrel, here; I've had this goddamned disease for what, eight or nine years now, and we're still trying to find something that helps. And so, we come to Rituxan.

"Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab," is the cheerful opener of the NIH page on this drug.

"Rituximab has caused severe skin reactions. These reactions have caused death," it adds (there's also dire warnings for people being treated for non-Hodgkins lymphoma, which luckily doesn't apply to me).

"Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment."

The page leaves me with this final admonishment:

"Talk to your doctor about the risks of using rituximab."

Ya think?

Except, of course, that there was no talking. I didn't read about it until after speaking to the doctor, or I would have certainly had some more questions.

"There's been more reactions to this medication than some others," the doctor told me. "So we're going to keep you at the OIC a while longer so we can keep an eye on you."

Which is great, except the people at the OIC are jackasses. Seriously. Every time I call to schedule an appointment, the idiot scheduler girl makes me repeat my history to her; what disease do I have? Who referred me? And this doctor, she is located where? And so on, despite the fact that they have these newfangled "computers" now, that show you patient information when you book them, and I've been dealing with the OIC for months. After I have negotiated the pit of stupidity which is the scheduler girl, I show up, on time, every time, only to have to wait an hour or more because they're always double-booked. Last time I was there, I spent the entire afternoon in a room they use for drawing blood and administering injections; all the actual treatment rooms (you know, the ones where they keep the oxygen, and trained nurses patrol in case you're having a tiny death-inducing reaction) were booked.

"You might consider scheduling your infusion on another day of the week," the random nurse who put the IV in suggested.

You might consider not double-booking your motherfucking facility, I thought. But I just smiled.

It's like flying Southwest. They should just give us plastic numbers and have us trample each other as we race to the available rooms.

Then, there's the lecturing. Because I've already had a reaction to a similar arthritis treatment, my doctor has ordered that they keep me a bit longer--a couple of hours, as opposed to the usual fifteen minutes. This makes the nurses at the OIC cranky. Which is perfectly understandable. After all, no one seems to actually read the doctor's orders before getting started and it comes to them as a complete surprise every single time I'm there (this makes me somewhat uneasy about the mystery solution they pump into my veins, but so far so good). Also, because of the aforementioned double-booking and scheduling-girl idiocy, they have more patients than they can handle. So I get lectured.

"You know, we don't normally keep people this long," nurse du jour will start out (apparently chemotherapy and other IV treatment is a very drive-through-y affair these days). And it goes from there.

"We never agreed to observe you this long," the last nurse groused at me. "That's just something your doctor decided."

Yes, well. Doctors and their crazy "deciding" and giving doctors' "orders". Truly a tool of The Man, always telling nurses what to do.

(Also? Ask me or any of the other patients here how much we care about inter-hospital politics or power struggles between your departments. Come on, I dare you.)

At any rate, this means that my observation period isn't really all it's cracked up to be. The first time I was there, a nurse with a chip on his shoulder the size of Texas simply evicted me from my room (ah, fancy room with oxygen tanks, how I miss you) and had me sit in the waiting room for several hours, with the IV line flopping off my arm (the actual IV drip got to stay in the treatment area). Lately, they've just been keeping me for a bit and then deciding I'm done. So at least I get to go home, where I can be not-observed while playing WoW instead of being not-observed in the hospital waiting room.

Anyway, this whole "Spam, Spam, Spam, death, Spam" thing is distressing. I know I spend a lot of time wishing I was dead, but still, I don't always wish I was dead. And if nothing else, I'm just a contrary person; I might want to die, sure, but I'll be damned if some lame-ass medication is going to be what does me in--when I die it's going to be on my terms, or by hilarious accident; not as a side effect. I'm also worried about the "severe disability" part; maybe it's my personal vanity (because I cherish my brain above most else) but the idea of not dying but having my brain turn to mush instead is terrifying.

Nerd alert

It really shouldn't be news to anyone that I'm a big nerd, but it's kind of embarrassing even for me to admit that I'm all aflutter over being able to add items to Todoist via Launchy. Yay!

Bizarre Bedtime Bookends

Last night, for about an hour, we had helicopters circling our area. They were flying relatively low, and I started out by making jokes to myself about them making a wrong turn on their way to Nevada; as the time went by, I went from bad jokes to wigged out to just annoyed all to hell.

Then, this morning I woke up to Steve Inskeep and Joe Palca singing about Moray eels on Morning Edition.

Orencia, we hardly knew ye

I went to the rheumatologist yesterday. I love my rheumatologist, but I hate going to see her. There are three reasons for this: I always cry, I have to get a battery of labs, and the bills. I have insurance, but of course they refuse to pay things left and right, so I spend the whole visit in a state of anticipatory distress. The aforementioned lab extravaganza seems to be one of the insurance's favorite things to not pay, so there's the added pre-bill stress on top of the regular I'm-going-to-get-yet-another-incompetent-phlebotomist stress.

Then there's the crying. I don't really cry a lot these days. But whenever I go to the rheumatologist I end up tearing up. First of all, my doctor seems to care, which makes me horribly uncomfortable. I want to have a business relationship with this person; the insurance (or more likely, a little bit the insurance and the rest, me) pays her, and she provides a service. But she seems to feel bad for me. It's not terrible, but this, along with the next thing, is a deadly combination.

The second thing is simply the fact that, stepping out of my protective self-involvement bubble and going to see her brings into sharp relief just how awful this is. It's putting salt in the wound. Hell, it's rubbing, salt, lemon, and vinegar in the wound and then leaving it to marinate for a few hours. Even when I do think I'm having a good day, I'm forced to admit that, yes, all my joints are swollen and yes, they are all tender, and yes, they all hurt, and I can't stand for any length of time, and I can barely walk (she was astounded a visit or two ago that I was able to walk a few yards from the elevator to my desk at work), and I haven't been able to put my own shoes on for months,--something so intimate and humiliating that I somehow manage to ignore each morning when my husband does it for me, but at the doctor's office there is no ignoring.

Here, I'm forced to discuss the fact the Orencia is not really working. Yes, it helps a little, and I can definitely feel it when it's time for another dose--like right now. A dose which I have not scheduled in light of the "Surprise! You owe us four thousand dollars!" missive I received not long ago. I'm not the kind of person who just has four thousand dollars laying about to send to the good people at the hospital (for whom, of course, everything is DUE NOW), both because I'm big fat failure and can't manage my finances properly, and because I simply don't make enough to both pay these gigantic bills and my other luxury bills like electricity and mortgage. So here, I am forced to confront the fact the Orencia isn't cutting it, and to talk about my massive bill (because of course, she's curious as to why I haven't scheduled my next dose).

Here, I am also forced to discuss the fact that the fibromyalgia is back. In short, my body has gotten so screwed up once again from being in constant pain from my joints, that my pain threshold is out of whack and my body, in its infinite wisdom, has decided that the best way to deal with this is with constant pain from soft tissues, more fatigue, and even less sleep. This means that I am in terrible pain in every single joint of my body, and in agonizing pain everywhere that's not a joint. Brushing against anything hurts. I yelp when my husband accidentally touches my shins when he's putting my shoes on. Sitting up hurts, but of course so does laying down. Wearing clothes hurts.

Here--last but not least--, I am forced to admit that I'm (no big surprise) deeply depressed and that I wish nothing more than to die. She tries, unsuccessfully, to convince me to try to get treatment again, which seems pointless to me.

She suggests that we stop the Orencia and switch to Rituxan, which works, she reminds me, by destroying my B-cells.

(I have, once again, the brief "Don't I need those?!" panic moment).

She assures me people at her office will work with the insurance to make sure it's covered. But people from her office already worked with the insurance to make sure the Orencia was covered.

She suggests I talk to patient financial services. I have already dealt with these people (in a previous "Surprise! You owe us two thousand dollars!" episode, when another insurance company decided I had not been diagnosed enough, in spite of having been diagnosed with RA by three or four doctors over the course of several years, and thus, my treatment was an optional luxury item, a pair of medical Manolos, if you will). Their help consisted of dutifully reminding me that the full sum is DUE NOW and sounding intimidating.

In an effort to not make the Giant Bill situation worse, she sends me off to the lab with the fewest labs she can get away with. This means it's two or three vials of blood instead of the usual two-gallon milk jug plus urinalysis.

And then, because this is how I repay kind professionals who show compassion towards me, I wonder how many of the labs she normally orders are actually needed.