Tuesday, December 27, 2005

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.

Friday, December 16, 2005

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.

Tuesday, December 13, 2005

Wednesday, December 07, 2005

I just want a bath.

this is an audio post - click to play

We amuse ourselves

[12:49] *********: I don't know who's doing the photos of Hussein's trial but the images they're putting on frontpage CNN look like they were taken from a made-for-TV dramatization of the trial. Saddam is always in these really dramatic exaggerated poses.
[12:49] xanesly: heh
[12:49] xanesly: well he's very dramatic and exaggerated.
[12:49] xanesly: he's a diva.
[12:50] *********: Yesterdays make it look like he was being *attacked* by the Quran he was holding.
[12:50] xanesly: he is, in fact, the Barbra Streisand of dictators.
[12:50] xanesly: ahaha
[12:50] xanesly: maybe he was...DUN-DUN-DUN
[12:50] *********: Drama-Queen of the Desert
[12:50] xanesly: next on Fox...When Qurans Attack!
[12:50] xanesly: now not only am I going to Christian hell, I'm also going to Muslim hell =[12:50] *********: The guys at Guantanamo HAD to destroy those Qurans, they were being attacked!
[12:51] *********: You'll have to work out a custody-sharing agreement between the two.
[12:51] xanesly: heh
[12:51] xanesly: I'm sure I've said stuff to offend other religions too, I'm gonna have to tour.
[12:51] xanesly: I'll sell t-shirts.

Tuesday, December 06, 2005

In Russia, arthritis has you!

There was an excellent show on KUOW's Weekday (click this entry title to go to the archive and listen) about arthritis. I was at work and missed the very start, but found myself at times simply devastated by it. The host read an email from me--not the whole thing, because it was pretty long, but he got the gist--at the end ("Ainsly") :

"I'm a 26 year-old female, and was first diagnosed with rheumatoid at age 20. My parents couldn't believe that their young daughter, living in the US, had this 'old people's disease,' and that it was chronic and that I couldn't just take a pill and it'd go away.

"Without medication I can barely move. My Saturdays now start with 12 pills and an injection; occasionally and without warning, though, I'll still wake up and be unable to stand. I am always in some amount of pain and I expect to be for the rest of my life."

and Mary Felstiner, who has written Out of Joint: A Private and Public Story of Arthritis responded:
"I just want to say something personal to Anesly--Anesly, this was me you're describing, and I believed that I would never have a good day again, certainly never a good week. I was in despair for many years of my life. Really, that's not how it turned out, and it's not how it's probably going to turn out for you; most likely, you're going to meet the treatment that's going to help, or the series of treatments that are going to help."

I have been wondering ever since--am I really so much in despair? I certainly feel like I have stopped fighting the arthritis. I used to think to myself, I have arthritis, and not the other way around, but I don't anymore. I have turned into a passive lump who swallows pills and visits the doctor and basically just goes through the motions, but I think--no, I know that I don't have a chance against this thing. I have lost all sense of perspective--I've mentioned this before. I don't know what it is to be well; this malaise has seeped into every aspect, every nook and cranny of my life. My joints feel either swollen or numb and cold; I'm on a high dose of steroids which is wreaking havoc on my body but allows me to move; if I lower the dose, no matter what other medications I'm on, I can barely walk or sleep. I am always tired, so very tired. I fall asleep everywhere.

I am so tired of being in pain.

This doesn't mean all my days are spent moping around. I drive to work, I am able to shower most days, though putting my socks and shoes on is incredibly difficult and painful on good days, and simply impossible in bad ones. I can type, though writing by hand is very painful. When I go home though, I am so exhausted that I don't want to do much other than sit at my computer and play WoW. The dirty dishes and clothes pile around the house and I don't care. Or when I do care, I am simply too tired to muster the energy to do anything about it.

Even here I sound mopy and contradict myself.

There are things that cheer me up and bring me joy. I love to go on drives with my husband and take the dogs to places; orange juice and coffee make me feel better; the cats come and cuddle with me or sit on my desk, and that makes me happy. I rant at talking heads on the radio and my husband is, luckily, amused by me. I love to see him laugh at my dorky jokes.

So, not all is moping, but I fear that the disease has embedded itself so deep into whatever it is that is me, that I can no longer separate it or cast it out. I don't just have arthritis anymore; I am arthritic.

Thursday, December 01, 2005

Best. Thing. Ever.

Virtual chicken hugs!