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

I just want a bath.

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.

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.

Best. Thing. Ever.

Virtual chicken hugs!

Just checking.

Is there anyone who doesnt think that the U. S. is going to start withdrawing some number of troops from Iraq by the time congressional elections take place? Yeah, just checking.

In which she can't find a Starbucks.

PS--I love audioblogger.

How I came to believe there is no god

It was a couple of years ago, in November.

Door 1, Bush 0.

I really am surprised that no one has thought of making a new Odd Couple show out of the adventures of Hugo and Dubya.

Singing Chavez

If anyone knows of a way to get a recording of Hugo Chavez singing "El Rey," let me know. Its entertainment value is through the roof and I'd be forever thankful.

We went to dinner at a local Denny's-type place--you know, mashed potatoes and pie--, and had a waitress who kept forgetting parts of our order. She apologized profusely and told us it was her first day. She had an accent--my first guess was Ukraine or Russia and was, other than the forgetting, perfectly nice.

Towards the end of the meal, a new party was seated near us. Most of them were wearing purple UW sweatshirts (it was Apple Cup weekend), and one man at the table started a conversation with the waitress in a fatherly tone. He asked her where her last name originated (Poland/Lithuania), and later, what brought her to the US.

"Well, you know Chernobyl," she started. "We lived near there, and after that happened, my sistered developed leukemia, so my mother and grandmother started trying to apply to all different places to go to, and this is the first one that said yes."

Nervous laughter.

"Oh," someone choked out. "That's nice."

Thunk.

Well, I used to have a website with a journal of sorts, but as of late I found I didn't feel comfortable posting there, because it was too easy to find by anyone from work who might Google me, or by people I'd met IRL I didn't really care for, etc. So I landed here; livejournal has a little too much of a teenage "I'm fat!" "No you're not! I'm fat!" "No you're not! I am!" vibe, and this has an easy way of managing posts.

I may move some of my older entries that I'm fond of from my other journal here later on, but for now this is enough to get me started.

She's dead. My sister called and left a message saying she had something important to say. I wouldn't really have wanted her to just leave a message about it. I called my family. It rang busy. I left a crying, slobbering message. No one called back. A couple of days later, I saw an announcement sent by email by my dad. "Announcement"--worded formally and meant for friends and acquaintances. I don't check my email very often anymore because of all the spam. I spoke to my sister again later that night and she gave me a little more detail. She suggested I call my mom again, since sometimes their phone rings busy when it's not and it's not very reliable about messages. I called my mom again and was able to speak to her. She had tried calling my cellphone. I wasn't angry about it then, but now, thinking back, I feel furious. It was her mother, so I didn't expect her to be making phone calls, etc. But it's not as if she's the only person in the family. Yes, I realize it's selfish and I do feel low and petty and bad about it. But goddammit. I haven't had that cell phone for two years. How many times have I given them my number, how many guilt-trips over 'please give us a way to contact you,' how many times have I explained that my home number is the only number I have anymore? And for what? Whenever something important happens, everyone gets confused or forgets or fuck if I know what and no one calls. My sister is the only one with enough presence of mind to actually write down my number. My dad couldn't even bother to send me a quick separate note by email.

Escarcha.

I'm terrible about keeping in touch. Sabotaging my own relationships plays no small part in this, but even when I'm not in a particularly self-destructive mood, I'm simply, well, just bad at it.

Once in a while, my parents send me a greeting card by email. I'm always touched. A lot of times I don't know what to reply with. If I'm in one of my more isolation-prone moods, I procrastinate the reply until it's forgotten.

My dad starts calling me. I don't want to talk to him. My dad is a good man. I don't want to talk to him. I don't want to talk to anyone. I let the machine get it--half the time he calls when I'm not there anyway, and I don't check my messages because I don't want to talk to people.

His messages go from "Just calling to see how you're doing," to "please email me, I would like to know how things are going." He sounds profoundly sad. I feel bad. Part of the problem--besides my messed up thinking--is that my dad and I have fundamentally different ideas about communication. I don't see the need for a lot of ooohs and ahs in conversation, or in email, replying just to say "ok" or "=)" or whatever.

He keeps calling. I don't know what to say to him. I don't want to talk to him, anyway. I don't even have long distance to call him back. I don't understand what he wants from me--I mean, I "know" he wants to just talk, but I don't really understand, not at a gut level, what he wants, why he wants to talk to me. The more he calls, the less I want to email back, not to mention speak to him.

I finally send him a short email saying that I'm ok, I'm working at soandso, and that I don't really know what else to say because I don't really want to speak to anyone. He replies with a long email talking about how my grandmother is increasingly old and frail and we should be ready for her to die at any moment. Over and over. And what's my phone number where he can reach me so he can call me when it happens.

I want to punch the screen. I know my grandmother is 91 and her health isn't good anymore. Why is he doing this to me? Why does he think it's of any use, of any help, to go on and on about this? What's he expecting me to do about it? What does he think beating it into my head will do? Does he think I don't care? And what the hell does mean by couldIpleasegivehimaphonenumbertocall? He's been calling my home number, which is the only one I have. Where does he think he's been calling? Is that even supposed to mean something, or is it his way of making small talk?

I let his message sit, unanswered, in my inbox.

My sister calls one morning for help with some school stuff. I'm just getting home after having worked an 11-hour, all-night shift. I help her as best I can, tell her about my schedule, then go to bed.
A few hours later, I'm woken up by the phone ringing downstairs. I don't keep a phone in the bedroom. The machine picks up, and I hear my sister telling me to wake up. She is loud, always so loud, and just keeps saying "wake up, wake uuuup!" in a half-cheeful voice. Her annoyance is palpable. I curse under my breath. She used to do this when we were living at home, too--I'd be trying to take a nap on the couch, and she thought it was hilarious to come up behind me and scream "WAKE UP!" What the fuck is wrong with people, why will no one just leave a fucking message on the fucking answering machine, why must they go on and on asking that someone pick up? Don't you think if I was there, or if I wanted to talk to you, I would have picked up by now? I clutch my giant stuffed animal and stare daggers at the ceiling.

She finally exhausts her "wake up" repertoire, and starts leaving a message. My grandmother is very ill. They've taken her to the hospital in an ambulance. I feel the blood drain out of me. I am briefly angry that it takes her so long to get to this part of the message, that it would be just like her to just call and whine at me to wake up from the few hours' sleep I can get before going back to work for another 10-hour shift, just to ask some stupid question--like what time zone my parents are at. Not that the question itself is stupid, but it's not important enough to demand rushing to the phone from bed and answering it RIGHT NOW. In that flash of anger, I hate her because she does stuff like this and I couldn't tell from the start of the message--"wake up, I need to talk to youuuuuu," etc.--that it was actually something important.

One of the reasons I really wanted to kill myself before turning 21 was that I couldn't bear the thought of my grandmother dying. I wanted to be dead before she was.

I. Feel. Nothing.

I listen to the rest of her message from bed. Even though I'm awake, I just stay in bed and try to go back to sleep. I feel nothing. I can't fall back asleep though, so I get up, go downstairs, and play on the computer. When Jed gets home, I don't even tell him right away. I am a sociopath. I am selfish. I don't even feel numb. I just don't feel.

I am buckling, and I try to hold on to that, to not feeling anything. Once in a while though, I crack, I start sobbing, but then bounce back to the bliss of feeling nothing. I can't look at Jed in the eye.

Later, from work, I call my dad to see what's going on. I hate myself for not calling sooner. I can't give him any comfort. I give him my work number, like throwing half-rotten table scraps at a dog. It has to be a brief conversation because otherwise I will start sobbing in the office, and my coworker is still there.

I talk to Ben about things going on in his life through IM at work. I can't give him anything either.

I can't give anyone what they want from me, or what they might need from me. I am empty. I feel nothing. I am selfish and most of all, weak.