The internet is for [food] porn.

I have been reading a lot about cooking and food in general. I really really want to cook, and I have a lot more energy now (more on this later), but I still can't, for example, stand at the stove for any extended period of time. So I'm living vicariously through food sites. My favorite right now is the Julie/Julia Project, which is excellent and very funny. I had heard about the book, but the blog had completely passed me--probably around the same time that blogs were becoming popular, and I avoided them like the plague, because a lot of the noise coming out of the blogosphere that everyone was all atwitter about, was just everyone echoing everyone else's take on the news. Plus, even though I host my ramblings here at blogspot, I reserve the right to feel "pfft, blogs! I had an online journal when you people were still in junior high! People used finger to get my entries! Damn young people."

At any rate, I highly recommend it, if you happened to have missed it the first time around like I did. One side effect though, I find myself swearing more than usual (which is a fair bit!) after reading.

I have also been reading chile.rec.cocina, since I've been sort of craving Chilean food. Not just the traditional recipes you make for independence day, but just the stuff that Chileans eat every day. Chilean food is sort of funny; there are some really tasty things, some that are very time consuming, and some weird retro pre-foodie things--lots of things in molds, for example; the idea of simple meals seems without merit to a lot of people (ie, if you just make something with olive oil and garlic, it might be tasty, but it doesn't count as a real meal, because it wasn't hard enough). At any rate, it's nice to read people speaking in "Chilean," and it reminds me of both the things that I love about the country, and why it's supremely stupid in some ways. A lot of ways. But that's also another entry.

But, stupidity or not, I would do all kinds of dirty things for a curanto right now. Mmm giant fish dishes...(here's a recipe, though in Spanish, if you're interested)

Se va a caer

I was going to make a list of stuff that I can do now since I started back on the methotrexate, but just a brief comment on Cuba for the time being.

I'm not usually one for conspiracy theories or the like--but I couldn't help but wonder, when it came out that Fidel Castro had "temporarily" ceded power to his brother Raul while he undergoes surgery, is he already dead? Like I said, I'm not usually given to such speculation, but god knows there are enough headgames going on between Fidel and, well, you know, the world, and it seemed very odd that this transfer of power was done with just a letter, no speeches, recordings, etc. Of course, every so often one hears rumors that, this time, he really really is dead, only to have him pop back up a few days later bragging about his health. At any rate, I realize that, the more time that goes by without an announcement that he has died, the least likely it gets that he's dead, but, I have to admit, the idea of Fidel Castro dying makes me positively giddy.

Still, though--embargo? Not working.

Meds meds meds

Ok, I thought I would make a list of the arthritis meds I'm currently on:

Daily:
20 mg prednisone
1 mg folic acid

Weekly:
15 mg methotrexate

I just got approved to take Enbrel, so I'll be back to the weekly injection thing soon hopefully. I forget if that's supposed to go every week, or every other week--I'm just waiting to hear from the pharmacy letting me know that it's ready. Hopefully this will allow me to lower my prednisone dose.

Ah, prednisone. 20 mg is a very high dose to be on. Doctors are shocked when I tell them. I have been on prednisone, on various doses, basically since I was diagnosed with rheumatoid arthritis. That's seven years.

That's bad.

The longer you use prednisone, the more likely you are to get some nasty side effects. And there are lots of them ("can range from mild annoyances to serious, irreversible damage"*):

- Retention of sodium and fluid (that is, swelling, bloating)
- Weight gain, obesity
- High blood pressure
- Loss of potassium
- Headache and muscle weakness
- Puffiness to the face
- Growth of facial hair
- Thinning (!) and easy bruising of the skin
- Glaucoma
- Cataracts
- Ulcers in the stomach and duodenum
- Worsening of diabetes
- Irregular periods
- Rounding of the upper back ("buffalo hump" [ed. their phrase, not mine])
- Retardation of growth in children
- Convulsions
- Psychiatric disturbances: depression, euphoria, insomnia, mood swings, personality changes, and even psychotic behavior
- Prednisone supresses the immune system, so you also deal with impaired wound healing, more severe and/or frequent infections, and decreases the effectiveness of vaccines and antibioitcs
- Osteoporosis and resulting fractures
- Aseptic necrosis (death and degeneration) of the hip or knee joints

Another catch is, prolonged use of this type of drug causes your adrenal glands to atrophy and stop producing their own corticosteroids. So you can't just go off the prednisone--you have to gradually lower the dose. Sudden withdrawal may induce an adrenal crisis which may include symptoms like nausea, vomiting, and shock.

Being that I am fond of my hips and knees, achy and creaky as they may be, as well as my eyes, digestive system, and bones in general, I am eager to get to a lower dose. Also, I would like my old, human, face back.

* a lot of the information here came from this article: http://www.medicinenet.com/prednisone/article.htm and from the Arthritis Foundation's online drug guide.

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.