It's the shirt that worries me.

We're driving in to work, and see my coworker, who sits kitty-corner from me, walking towards the office, wearing a Hawaiian shirt. And carrying a large axe.

I'm a little concerned.

J. drops me off, and tells me, "if J. has gone postal on everyone, give me a call and I'll come get you," and goes to park the car.

Later, it's explained to me that J. was just returning it to another coworker. It was never really explained why this other coworker had a big axe, or what coworker J. was doing with it, or why it's necessary to hand it off IN THE OFFICE.

I feel old

[11:28] xanesly: dude, wtf happened to the internet, used to be you'd search for a song title and "mp3" and you get shitpiles of mp3 sites and porn and warez
[11:28] xanesly: now all I get is fansites and pay-per-download itunes-type places
[11:29] ************: Napster sold out and everything went downhill from there.

Sunday afternoon

Woke up late, which doesn't help. Usually the pain gets a little better as it gets later, but no luck today. I tried to do stuff at computer, but I can only type with one finger and it's slow and excruciating (am slowly typing this out on Treo). I am scared to eat or drink because I will have to try to walk to the bathroom. A while before 6pm I finally gave up and dragged myself back to bed.

D'oh

Right after finishing my last post, and thinking of how much I want to give Humira another try, I come across this:

Researchers at the Mayo Clinic say that a new look at earlier studies confirms that a class of arthritis drugs is linked to infection and cancer. [link]

I hate this disease.

Flare.

I've been in a pretty terrible flare for the past month or so, though it's hard to tell whether it's actually a flare or it's just that I'm basically untreated--I'm still on a high dose of prednisone, but while I was without health insurance, I couldn't afford the couple thousand dollars a month for Humira, or visits to my doctor, for that matter.

A couple of good things have happened, though: both J. and I got jobs (together, no less); mine is contract work with no benefits, but he does get insurance, so I'll be able to see my doctor in a couple of weeks (she was booked solid until then). My job, while it doesn't come with benefits, does come with a really cool boss; he seemed concerned about me (I've had several days over the past weeks where I simply couldn't stand, so I had to miss work), and asked if there was something that could be done--so I worked up the courage to ask him if I could work from home on days when I can't move. The type of work lends itself well to this, since most everything is done on the computer, and my main work computer is a laptop; we have wired and wireless networks at home, so I'm able to do stuff even if I can't make it down the stairs.

Having the option to work from home is nothing short of amazing to me, and I've already had to use it a couple of times; still, as always, I'm my own worst enemy. I feel really lazy, and like I'm just taking advantage of things; I always question whether I'm in enough pain to be able to take someone's help. And as always, I'm sort of emotionally distant and it surprises me and makes me uncomfortable when people show concern.

Ah yes, issues, so many issues.

Another thing: my coworker across the way--I'll call him Bob*--was recently diagnosed with RA. He's still having some trouble coming to grips with the idea of this thing being for life. He's older than me (middle-aged, I think--I'm terrible at guessing people's age); we spent my first few days here shooting each other furtive glances, trying to figure out if we were both part of the exclusive arthritis group. Once we figured out that our arthritis radar wasn't misfiring, it was nice to be able to talk about some stuff--although it's kind of difficult for me to see him sometimes, because it's like living it all over again, like having arthritis in both his timeline and mine. RAing for two. And like with my little sister, it's really tough to answer questions honestly, because I hope that a lot of the problems I've had are just unusual and I don't want to discourage them. RAing for three.

mmmburrito.blogspot.com : arthritic gaydar since 2006!

*Bob is my favorite all-purpose name, because it's short and symmetric.

Here's a more recent picture of Theo, aka Mr Poopers or El Barfo (do the nicknames really need explaining? I didn't think so)

"Israel used death by chocolate, book says"

Mmm, chocodeath.

"Israel's Mossad secret-service agency killed a Palestinian wanted for airplane hijackings by feeding him poisoned Belgian chocolate over six months in the late 1970s, according to a new book, the author said Saturday."

Cleanliness

You wouldn't know it from looking at my house, but I hate messes. I finally managed to clear out my desk at my new job this week. It drives me crazy all the crap people keep in their drawers--how many different stacks of post-its can anyone need? Plus there's always the assorted dried-up highlighters, nonworking pens, old chopsticks, sugar/salt packets...I even found boxcutter blades floating around.

My favorite, though, was this one: a novelty pack of generic Costco brand pills. No labels, no explanation, nothing. Just different color pills with an expiration date (10/05).

Dirty. So, so dirty. Reowr.

Stupid stuff makes me giggle.

My goat, part 2.

Introducing Pamela the sexy marionette goat.

My stupid goat

It's not all good either

It's not all bad.

It's not all depressing, really.

 

Jed and I celebrated our fifth wedding anniversary last Friday. We started going out nearly six years ago. On our first date, he brought me flowers (we'd been talking by email), but I didn't want to assume that they were for me--though of course, why else would he be carrying flowers around in the car--so I didn't pick them up for a bit. We got Indian food--my first time trying it, and we went to a used books place, and later watched a horrible martial arts movie. The date ended up taking nearly the whole day, and we made plans to meet the next week.

So yeah...

I haven't written for a while cause it's all depressing. And it's not like there's a lack of depressing to be read on the web. I had written an entry about suicide which actually wasn't mopey, but I thought people would find it a bit too disturbing. Suffice it to say I think about it just about every day, and my fantasies have become more violent as time goes by.

So, what else is there. I called my mother to reassure her that really, RA is not such a big deal and that my little sister will be ok. It's a lie. I found out that she's on the same type of antiinflammatories that I take. I told her how much they helped me when I was first put on them. I told her she shouldn't stay on them for long though, the idea is to move her on to other medications to take care of the disease.

"How long were you on them?" she asked.

Silence.

"It's been six years." I don't have it in me to lie about this too, but I leave it at that, and don't go into the details, how it's weakening my bones, how it's turned my face into a puffy round caricature, how it's made me splotchy and covered in fuzz, how, if I take it too late in the day, I wake up drenched in sweat so bad that I can't sleep.

Yeah. It's all depressing.

No pills for what I fear

Shudder

The scariest thing to come out of yesterday's Alito hearings: the image of Ted Kennedy and Arlen Specter working out together.

Just a quick note.

I've been in a pretty good mood these past few days. I had a really nice Christmas, though I was pretty stiff. New Year's was nice too--both holidays pretty low key, and we actually managed to clean up enough to invite people over. "We" is mostly Jed though, since I was pretty useless. Though on second thought, I did do some work--I can't tell if I'm just flogging myself or being realistic.

I should give credit to Mary Felstein in the amazing Out of Joint for putting into words and crystallizing the idea of arthritis as a disease of confusion of the self. For a while now I've been worried about losing whatever it is that is me in it, but the way she puts it is just brilliant.

It's unsettling how random it can be; I was feeling pretty ok all day yesterday, then, all of a sudden in the evening, I stood up from the couch and couldn't put any weight on my left foot; it felt like my ankle was made of toothpicks and was just waiting to break. So I used my cane for the first time, though it's very uncomfortable at best, because it forces me to put my weight on my wrist.

But anyway, pretty good mood. Trying to have an entry where I don't write about RA at length. So, on that note, I am absolutely addicted to lentil soup. My favorite right now is from a little Greek place near where we live called Kafe Neo; but Ryan also recommended instant cup things by Nile Spice (I think that's the name). So, have some soup, people, and don't think about the other stuff too much.

The girl with arthritis

My breasts hurt. They sit heavy on my chest like sagging balloons filled with heavy, viscous fluid, pulling on the surrounding flesh and tissue, a constant reminder of this grotesque, ever-tender thing I've become.

I read Out of Joint today--got it for Christmas--in one sitting at work. I want to ask Jed to read it, but I don't like feeling like I'm assigning homework.

I stare at my fingers. Am I imagining it, or are they getting more knotted, knuckles more prominent, puffy, bent in odd ways? It's hard to tell, because I can't really straighten them. Thankfully I can type still, but today my wrists hurt more than usual.

Such long, beautiful fingers, they used to say. A pianist's hands. I always wanted a piano. I was taking a piano class when the arthritis first moved in.

He picks me up from work with the dogs. I plop in, close my eyes, exhausted, and let the tears roll down my cheeks. I breathe through my mouth, so he won't hear me sniffle, hoping against hope that he won't notice me crying, and that he will, and will drop everything and just hold me. Theo's head peeks around the headrest and licks my face. I am reminded of the dog of tears in Saramago's Blindness. Is everyone else blind? Is there clarity, insight in pain? Will my name stop to matter, will I simply become the girl with arthritis, a character, a devise? I worry about losing my sense of self, of something other than the disease. My body is already confused as to what is external and internal, benign and malignant, harmful and necessary. How long until the mind follows?

I keep it to myself, until it's time to go to bed. My breasts hurt, I try to explain, hunched over, hugging myself. They just feel so heavy, and tender, and bad. He is frustrated that he can't do more to help, make it go away, make it better. I remind him of how much it means to me that he holds me and lets me bitch or mope or cry or laugh when I need it, and everything else he does for me. There is nothing else to be done. I am terrified one day he will get sick of it, and leave.

What it's like

I was in so much pain last night I couldn't sleep. It's not unusual for me to wake up often through the night because of the pain, but most of the time exhaustion overcomes the pain at some point.

There is a spot on the top of my head that doesn't hurt. I try to concentrate all my attention on that spot.

I've said this a lot before, I'm sure, but you never realize how many joints you have until they all hurt. We all think of elbows and knees, but how often are you aware of every notch in your spine, every knuckle, your jaws, ribs, toes, every tiny bone meeting bone in your hands, your hips in their sockets, all resting uneasy at best, in searing and numbing pain at worst.

I take mental inventory of my body. Tonight's pain is numbing, swelling, and it feels as though my shoulders and hips are about to pop out of their sockets. The tips of my toes don't hurt, thankfully. I try to think of the spot on my head and my the tips of my toes--though not the toes themselves, because they hurt too.

My hands gnarl into claws trying to find a more comfortable position. I can't stop thinking about my hips. They clamor for attention until I am drowning in pain and even simple things like the feel of the bed and comforter seem like a distant echo.

I shuffle to the bathroom and break down into whimpers. I feel exposed and overwhelmed with sadness.

I come back to bed, and my husband grabs my hand.

"I'll make it all better," he says. "I'll get a job and find a cure for arthritis."

"Ok," I tell him. "Once you do, I'll get a kickass job and you can just be home or go to school and take cool classes."

"Ok."

I grab my stuffed animal and settle in for several more hours, hoping to doze off. I finally give up and drag myself downstairs, hoping that sitting on my desk chair will hurt a little less and I'll be able to nap.

I email in to work trying to explain why I can't come in.

I don't think I can make it back up the stairs if I need to.

In memory of Moh