Where I've been...

I haven't written anything for a while. Partly because I'm lazy, partly because I'm busy, and so on.

On the health front, I never heard from my doctor's office about the Rituxan. Hopefully the drug company didn't send me something by snail mail, because it probably looked like junk mail and if so, it went straight into the recycle bin. I'm seeing my doc on Tuesday, so I guess we'll see what happens then.

On the money front, I actually had some good stuff happen that allowed me to pay most of my surprise medical bill. Oddly enough this is what I'm most uncomfortable talking about, so I won't go into detail right now; I still have some pretty hefty bills, but they seem more doable.

I did go through with the server transfer, found a nice guild, and I'm raiding again, though the schedule is tighter than I'd anticipated--I get home like 10 minutes before invites go out, and by the time we're done, I have to go straight to bed (it's not that late, but I have to go to sleep relatively early if I want to not be worthless in the morning). It's been both weird and relaxing not knowing anyone on the new server--in my old guild, a lot of people had my phone number, or knew about the arthritis, or whatever; here, I show up, stab the hell out of stuff, and that's that. No dealing with the annoyingly needy people that I inevitably surround myself with, no fielding well-wishing or trying to gently turn down suggestions for quack RA cures. It's nice. On the other hand, well, I don't know anyone, really. I'm sure I'll eventually overshare and end up the same as always, but for now, it's kind of refreshing. One guildie did go and find this (hi), which threw me for a loop, but, oh well.

"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.

11:38 <@Sporks> I like my work
11:39 <@Sporks> because I can proclaim, "time to make Bloxorz my bitch"
11:39 <@Sporks> and people just cheer me on

WoW Update: I need a new name!

I'm transferring servers on WoW, and my current name (Sporks) is taken, so I need to pick a new one (Spork is also taken).

Suggestions from Random Internet People and other friends:
- Conundrum
- Kushi
- Gankersore
- Sproks
- Foon
- Tomsawyer (as in Rush, not Mark Twain)
- Kingsleyzissou
- Blackcop
- Tongs
- Bitchincamaro
- Arrozconmuerte
- Dioconqueso

The Zen of Fish

As you probably know, I'm an NPR crack-addict. One of the downsides of this (besides the fact that I have no idea what a lot of important people look like) is that, when a new NPR-darling book is making the rounds, I hear about it from noon to night as the author passes through program through program. Morning Edition? Check. Fresh Air? Check. All Things Considered? Check. Maybe even Marketplace? Check. KUOW's local shows? Check. I went almost crazy from hearing about The Year of Magical Thinking and by the time they stopped talking about it, the mere mention of the name made me break out in hives.

Ok, that's not really true. But during this time period, I couldn't stand to hear about it.

Anyway, Trevor Corson's The Zen of Fish was [relatively] recently making the NPR rounds, though on a smaller scale (Googling "zen of fish" on npr.org returns only a couple of pages of results), and since I'm a lot less reluctant to read about fish than emotionally brutal memoirs, I thought I'd give it a try.

Corson interweaves scenes from a semester at the California Sushi Academy with historical and scientific tidbits about sushi and various fish. The CSA scenes mainly follow three students: Kate, Marcos, and Takumi; Kate emerges as the main focus of the "human" side of the book, but it falls flat. I'm not sure if the problem is that he didn't delve deep enough into the students' personal lives or develop their personalities, or if the focus was simply in the wrong place. I just couldn't care, much less sympathize, that this girl who had decided to pay $5,000 to learn to be a sushi chef was upset by the fact that she'd have to use sharp knives and was grossed out by cleaning fish, or that the instructor was mean to her. The whole girl-feels-like-quitting-when-confronted-with-reality-and-mean-teacher/
coach-but-perseveres-and-emerges-with-newfound-confidence-and-
appreciation-for-teacher thing felt forced; Zoran, the instructor, didn't seem like a sadistic drillmaster or a strict, stoic Japanese uber-traditionalist (this is a program, Corson tells us, that aims to train sushi chefs in just a few months instead of the years that traditional Japanese training would take). He didn't seem like a jovial, overly friendly sort, either, don't get me wrong; but he wasn't nearly as bad as we're meant to think. I couldn't see Kat's growing appreciation, either. I was, not surprisingly, also unable to muster any sympathy for Marcos--a teenager who'd attended cause he thought it'd be a good way to pick up girls. Takumi was interesting, but not a lot of time was spent with him. Any time that Corson tries to bring us into the inner lives of these students, the thoughts are a little too overwrought, the drama a little too pat and convenient. The non-student characters seemed much more interesting to me, but unfortunately he didn't spend much time with them: I would've loved to hear more about Zoran or Toshi; Fie also seemed interesting--the author goes to great lengths to tell us of her beauty, how men fawn over her, and how she questions if she's actually a good chef or men are being nice to her because of her looks, only to largely gloss over her. Except to come back once in a while to remind us that she's beautiful. And blonde.

After the exasperating treatment of his human subjects, it's a refreshing change of pace to read about the fish. Refreshing, but not unexpected; I haven't read The Secret Life of Lobsters, but I did read Corson's piece in Best American Science Writing 2003, and it was wonderful. I found myself looking forward to the historic interludes, and wishing they'd go on longer. The bits that touch on science--whether it be chemical reactions or the life cycles of various fish, are at once totally accessible, brisk, entertaining, and tantalizing. Afterwards, I found myself wasting days looking up information about eels or salmon. I wanted to hear more about seaweed, or fish runners in Japan, or about some warlord or another.

All in all, it was a fairly satisfying read, even though those pesky humans kept interrupting the fish narrative; maybe, to a more sympathetic reader, even the bits with the students could be appetizing.

It's a good thing I don't mind needles...

It's been over a month now since I last had blood drawn, and I still have purple/green bruises on top of my right hand and in the crook of my right arm, where the perky, red-headed phlebotomist jabbed in her needle.

Apparently, my veins are tricky. Normally it takes a couple of tries to get blood. Often, the phlebotomist will give me a warm towel or hot pack to hold over the site so they can have better luck. What they don't normally do, is start thrusting the needle in and out in hopes of getting blood, like this girl did. Or stick the needle in, and then sweep it around like the hands of a clock.

At this point, I start bleeding. Bleeding quite a bit. This is not that unusual either; in their zeal to find the vein, they usually end up scratching or poking or bruising something, and then I bleed. Usually, the nurse just gives me a piece of gauze, and that's that.

Instead, the phlebotomist lets loose a string of "damn it! shit!" under her breath, and scrambles around the tiny room.

Blood pools on my arm.

She finally finds a piece of gauze, fumbles it onto me, and I hold it down. Then she goes to try the top of my hand.

She does the needle-thrusting and sweeping once more, but with better results this time.

The gauze on my arm soaks through. She seems startled, and finds another one.

She tapes the new gauze on my arm, gives me a new one for my hand, and sends me on my way.

SharePoint

12:43 < Teran> Whee I get to set up a test environment. Hmmm
12:43 < Teran> SQL, Exchange and what else should I set up
12:43 < Teran> sharepoint?
12:43 <@Sporks> friends don't let friends set up sharepoint
12:44 < Teran> Yeah but we work with a lot of sharepoint servers
12:44 < Teran> It's the new groupwise
12:44 < Teran> Which is like saying horseshit is the new dogshit

Lawn chair pilot flies with 105 balloons - Yahoo! News

Lawn chair pilot flies with 105 balloons - Yahoo! News

I'm so jealous.

11:27 <syd|> I loved anything that uses a BB gun as an ad hoc control surface
11:27 <syd|> if only the concorde had a pilot shooting BBs at the flaps it'd have been so much better

NPR : Former Member of Radical Islam Questions Faction

NPR : Former Member of Radical Islam Questions Faction

Amazing interview on NPR. Make sure to listen to the extended interview, and to read his editorial on The Observer

08:57 < Elliot> I need shoes with rollerskates in them
08:57 < Elliot> it's a trade off though
08:57 < Elliot> how cool would it be to roll around on them vs. how big a douche would I be for having shoes made for 6 year olds

Finally some good news from Brazil...

My parents moved to Brazil a while ago, trying to find work. I don't know if it's better or worse than Chile, to be honest. They've had a terrible time there, and part of my own stress these days comes from worrying about them, and sending them large (for me, anyway) chunks of money each paycheck. For a long while I was basically sending them my entire paycheck; right now, my sister and I are taking turns (we were both sending them money every month for some time). Every time I hear from them, my stomach turns and binds up, stressed and worried about what's gone wrong now.

Until two days ago, when I finally got some news that made me smile...I was chatting with my mom on Google Talk, listening to Joan Manuel Serrat, which of course always makes me think of my dad, and asked her how he's doing.

"He's doing great," she said, "right now he's in a class with five young men singing John Lennon's 'Imagine.'"

Years earlier, I remembered, he'd tutor young people who were preparing for their English university exams. He'd always have a unit on the Beatles.

His students always thought he was the best.

BBC NEWS | Americas | Bush spares Libby from jail term

BBC NEWS | Americas | Bush spares Libby from jail term

Complete and utter bullshit. The Administration is simply a disgrace.

I should add something: I'm not so naive to have thought that Libby was going to serve his sentence. This had pardon written all over it. But, in keeping with the way these things usually seem to happen, I expected it to be quiet and underhanded, not this blatant middle finger to, well, everyone. Being that Bush has, in fact, been giving America the finger for nearly eight years now, though, I should've known better.

[09:07] Spleen: in celebration of my impending success, i'm listening to 60's synth art-rock interpretations of modern classical pieces.
[09:08] Sporks: dammit.

[12:47] Spleen: i'm going to celebrate my victory over faxing software by listening to Iron Maiden. fyi.

Puppet safety concerns

Someone posted this on a board between the men's and women's bathrooms at work. It's probably a joke, but I hope it's serious--it's so much funnier if it is.

In case my phone picture is too blurry, it says:

"As a result of last week's incident, and due to growing safety concerns, puppets will no longer be allowed in the break area or bathrooms.

Thank you for your cooperation."

Quick RA update

So I have this whole long thing about my adventures in Oncology, but I can't seem to buckle down and actually write it. For the time being, I'll let you guys know that I'm doing ok; I think the Orencia is working. It's a little disconcerting because my doctor is out of the country for the rest of the month. So far so good, though. More later.

Up next: Orencia (part 2)

I don't know why I'm so freaked out about this, but I am. I guess because of the way it came about. Yes, I know I'm lucky to have a supportive husband, and insurance, and a good job, and all that. I really do know this. I'm still freaked out, which puts me in a cranky mood.

So, for the gory details. My infusion takes place tomorrow, over a couple of hours. Tonight, I'm supposed to take four times my usual prednisone dose; this will make it so I can't sleep, so I'm taking the day off tomorrow. Once at the hospital, they'll give me yet another dose of steroids, and then the medication itself, intravenously. This is the part that takes a couple of hours.

When I used to go in for Remicade, I'd bring my husband's laptop (I didn't have one of my own at the time) and watch a movie. My laptop right now is sort of huge, though, so I don't know if I'd be able to hold it long enough to watch anything. Also, I may be too exhausted; it wouldn't be too bad to just sleep through the whole thing.

I'm worried about having an allergic reaction. This is what happened with the Remicade; I was doing great on it, and then, out of nowhere, I had an allergic reaction--couldn't breathe. So that was that. If this happens again, there is, I think, one other alternative, and then we may be out of options again, until someone comes up with a new drug.

I want to be able to not have to carefully weigh the pros and cons of having a drink, because walking to the bathroom (not to mention sitting), is such terrible pain.

It seems stupid to have my husband come sit with me for hours just because I'm freaked out. I can't in good conscience ask him to just hang around and twiddle his thumbs for the whole day. Either this thing will work or it won't; either I'll have a reaction to it or I won't; there's nothing that his being there will change, I guess.

The drug itself is pretty scary--"it works by blocking the activity of T-cells". I suppose that's no scarier than anything else that screws with your immune system, but still, it's odd to have your doctor recommend this--my gut reaction was, "T-cells? Don't I, you know, need those? *flashbacks to Pedro going over his T-cell count in The Real World*" Of course, my last drug was TNF inhibitor--and I mean, why would you possibly need the stuff that fights tumors in your body.

Side effects are the usual: infections, increased cancer risk, etc etc.

I've spent long enough on this for now; we'll see how stuff goes tomorrow.

Up next: Orencia

So, I have been avoiding the topic as much as I can, but it's arthritis time. I've been in a pretty bad flare for the past month-plus. I don't have the energy to go into detail about all of that--you can browse through the archives if you're curious as to what that's like.

I've also been waiting to get approved for a new treatment. First, my doctor's office took their sweet time to get the approval process going. Apparently there is one single person in the whole rheumatology operation at my hospital who is capable of doing this. And she was out of the office for a few weeks, so it took about a month just to get this going; after she came back, I had to chase her down because no one was calling me (as promised), and then had some trouble getting my calls returned (I can only imagine how swamped she was if she's the only person handling this type of thing), which added another two weeks or so.

On Thursday, I had to leave work early because the pain was so bad. On Friday, I was barely able to walk in the morning, and spent most of the day laying in bed. Apparently some time Thursday afternoon, the Girl From Rheumatology (sounds like "Girl From Ipanema" in my head) called letting me know that I'd been approved and the OIC (Oncology and Infusion Center) would be calling me to make an appointment. OIC called twice on Friday, of course, and I didn't even notice it, what with being in a pain-induced haze most of the day--not that I'd be able to do anything about it, since I couldn't hold a phone or dial during business hours.

I returned their call today morning, and got bitched at for not answering.

You'd think that people dealing with patients suffering from cancer and other diseases disruptive enough that require, you know, poison to be pumped directly into their veins in order to function would be a little more understanding.

I would like to take this moment to deeply and sincerely apologize to every receptionist whose appointment-scheduling has been ever-so-slightly disrupted by my inability to overcome the agonizing pain that keeps me pinned to the bed so I can sprightly hop on over to the phone and answer by the second ring. I have been truly selfish and thoughtless.

After sheepishly taking my well-deserved talking-to by the OIC Star Scheduler, she informed me that since I hadn't called them back until today--and really, this is my fault, I should've had the oversight to add more business days in between Friday and Monday--, she had gone ahead and scheduled me for an infusion. On the eleventh. That is, the day after tomorrow.

I'm lucky enough to have understanding bosses and to work for a fairly nice company. I shudder to think of what happens to the other poor bastards with this disease when they suddenly have to block out three to four hours in the middle of the week in the middle of a workday on two days' notice.

One last, additional problem with this whole thing: this week, of all times, my rheumatologist is out on vacation. She had mentioned she wanted me to dose up on prednisone before the infusion, but I don't have the exact dose or instructions. OIC was unable to provide me with any special instructions from my doc; her office is consulting the on-call doctor. Additionally, there may be other stuff (more meds plus observation), since I had a nasty allergic reaction to an infusion in the past. Hopefully she wrote this down some place accessible to the other people in her office.

I'm pretty freaked out and not too happy at this point. Will write more later about the medication itself and some of the things that are freaking me out about that.

KUOW was reporting this morning that the man who shot a UW staff member was a British citizen in the country illegally.

Clearly, we must build a fence on the Atlantic.

Update time--
Glasses: the trapezoidification issue got a little better, but not much. I was being lazy about scheduling an appointment to get them fixed, but then yesterday morning my dogs decided to help me out by chewing my glassses up and breaking one of the lenses.

Cold: holy crap, I was sick with this BS for two weeks. Felt like death by the end, but I've been better this week, though I'm still sniffly from time to time. It's always a little stressful when I get sick every winter, because my immune system is not really up to par.

WoW: we've started poking our heads into Karazhan, which is fun. We're still hashing out guild/class numbers (hey look! we're recruiting!), but I'm looking forward to doing more stuff once we get this more settled down. And I'd just like to take this time to add my voice to the giant "WTF, Blizzard" being echoed by raiders everywhere.

This is the part where you non-WoWers can start to not care:

1) Lrn2math: before the expansion, WoW raids were 40- or 20-man affairs. After the expansion, new raids are 25-man. There is also one 10-man instance (Karazhan). You do the math. This is a nightmare for guild management. Also, Karazhan is where most guilds will spend the bulk of their time, because...

2) there is no "introductory" 25-man content. The two raids that were supposed to be entry-level content, are so unappealing and difficult that even the hardcore guilds (and I mean here, "average" hardcore, as opposed to guilds going for world-firsts, etc.) are either having trouble with them or have little incentive to even try them, because...

3) the risk vs. reward ratio is out of whack. You need massive consumables to beat fights that may have a large luck component, and the drops you get from these fights don't help you get away from the massive consumable use the next time you come back to fight the same guy.

Here's hoping that some of this gets fixed by the time we get there.

I'm sick!

But for once it's not the arthritis. I've got a nasty cold or flu or something that's making it feel like my brains have liquefied and are trying to come out my nose. It's all very bad. It's been about a week and finally I'm starting to feel better.

In other news, I finally got my glasses replaced, and since it's been so long since I wore them (and the prescription changed a little bit), everything looks off. I feel taller, and my monitor looks like /___\ instead of |___|. According to the people at my optometrist's office, it should wear off somewhere in between a few hours and a day or two, but until then, the monitor thing is driving me bonkers and making it pretty hard to work. Also, my husband amuses himself by pretending he's shorter or taller than he really is to try to trip me up.

Communication

The secret to a good marriage: communication.

[10:53] Sporks: I miss being able to drive myself places <<=(
[10:54] Sporks: I hate having to make you go everywhere with me
[10:55] MrSporks: <:(
[10:55] Sporks: it's not that I don't want your company but I hate not being able to
[10:55] MrSporks: i understand
[10:55] MrSporks: you think i'm fat.
[10:55] Sporks: exactly.

15:26 <Syd> I need to invent a heated hose, teach me how to mix electricity and water

And another thing...

A company we do business with is taking people in my office bowling.

Things You Do When You Go Bowling That I Can't Do:

• Tie shoes
• Hold a bowling ball (that is, I can't support the weight)
• Put fingers in bowling ball/grip bowling ball
• Swing arms beyond normal walking
• Walk at moderate-to-fast speed
• Bend down
• Push ball
• Sit on hard plastic chairs for any length of time
• Drink beer

In short, I'm not going.

In unrelated but more upbeat news, I finally got around to ordering Hagalo Usted Mismo. I can't wait to get it--it's coming overnight, but it's the weekend. Every time I hear a song from it on Pandora, I beat myself for taking so long to order it.

I feel like garbage. I'll try to keep the health stuff to a minimum, though. I may be starting a new RA treatment soon, since the Humira failed to do, well, anything. I'm also having a lot of trouble remembering to take my meds, which is unusual for me.

So, since I'm trying to make myself, you know, write stuff, and don't want to talk about feeling like garbage, WoW update time. I hit 70 last week; people are still sending me "grats" messages, and it always surprises me because it feels like it happened a long time ago. I've been working on getting various attunements/keys, because I'm going a little loopy from lack of raiding. I'm not having much luck getting into 5-man groups, though, which is discouraging. I'm a good rogue, but rogues have certain PvE issues which don't make them really desirable for 5-mans.

For starters: we take a lot of damage. We can't do damage from range, so we get smacked with all kinds of AoE attacks (both physical and magical), and our armor is only leather. We require a lot of healing. Also, on fights that require kiting a boss, it can be tricky to get enough face time with the mob to contribute significant DPS.

Our crowd control, sap, is currently the most reliable CC in the game--Blizzard removed the heartbeat resists, so it lasts the full duration. However, you can only apply it once, because it can only be applied from stealth and while a mob is not in combat. And for some reason, Blizzard has decided to start including packs of mobs that are already engaged in combat, thus rendering them unsappable. Not just one or two mobs in a pack, but the full pack--I shudder to think what these guys will do, un-CC-d, in heroic mode.

There are other significant issues for rogues in the expansion, but others have already covered them well and in detail, and nothing has come of it.

And last but not least--Blizzard's LFG interface is just bad. You can only look for groups for instances your level (so no going farming on an alt while monitoring LFG); you can only look for 3 groups at a time; you can't look while in a group (so if I decide to go run some lowbie friends through something to pass the time, it drops me); and last, but not least--so few people use it, you may see one or two people looking for an instance at any time. People find groups through a mishmosh of adhoc channels, general in-city chat, friends/guild lists instead.

Resolutions schmesolutions

I know, long time no post. It occurs to me that I have a lot of random stuff to comment on/write about, but I'm not sure what I want to become of this thing.

I've been keeping an online journal of sorts for about six years now, and it's gotten to the point where I've started worrying about what people reading it would think. My original intent was to be more open and it was important to me to be honest with what I was thinking, but now I worry. Do I want to move to be more anonymous (moving here off deadletter was a step in that direction), so that employers, etc., can't see this, or go the complete opposite, go back to my original intent, and stop trying to hide. I'm not sure yet.

For the time being, some updates of the prosaic: I have a job I like, for the most part. I work with my husband (same place, near each other, but not on the same team). My arthritis has been pretty bad the past few months. My family's been having some financial problems so I've been funneling my money to them. I've been pretty up and down in the depression front. Still living north of Seattle. My entertainment of choice is still WoW. I miss speaking Spanish sometimes--not any Spanish, mind you, but the butchered and funny Chilean Spanish.

I'm going to try to post a little more often while I figure out what to do about this thing--writing something will hopefully help me get out of my own head some.