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

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.