Today is my one year diseaseversary!

One year ago today, I was called into the restaurant because none of my family's employees showed up for work. I went in, even though I was feeling a little bit sick and weird. I had a mild tingle in my hands and feet. By the afternoon, the tingle was much worse and had moved up my arms. I had a doctor's appointment at 4:45 to have a wart removed. I told the PA that I wasn't feeling well and that I had a weird tingle in my arms and feet. He decided that, because I saw a rheumatologist for the "arthritis" (more on that some other time) in my foot, it was probably related and I should make an appointment with my rheumatologist. He removed the wart and wished me good luck with my arthritis.

By that evening, the tingle turned into pins-and-needles and a heavy pain settled over me, like I was being crushed by an elephant. I was lying on the couch with the TV on, trying not to let anyone know that I was crying, when my husband noticed and asked what was wrong. I started sobbing and said that it hurt so much and wouldn't stop. We went to the ER for the first of seven visits there, trying to make someone, anyone, pay attention to the fact that there was something wrong with me. They sent me home with some Vicodin and directions to call my rheumatologist in the morning. The Vicodin didn't do anything for the pain, but at least it put me to sleep for a few hours.

And that was the end of my first day with Guillain-Barre Syndrome, an immunological, neurological disease that has absolutely nothing to do with rheumatology. It's been one year of hell -- of agonizing pain, of four months in the hospital, of no financial income and no creative output, of a life suspended. I'm not yet cured of the effects of the disease, but I'm better than I was before, and that's something. I've at least started thinking about resuming my life.

In honor of my diseaseversary, please tell me any ways you, your life or your situation have changed in the past year. I'm slowly working my way through your journals, but in the mean time, I'd love to know what you feel have been significant changes.

This is srsly the funniest story in the history of EVER.

SURPRISE SQUIRREL!

I die every time I look at that.

I just weighed myself and I have OFFICIALLY gained forty pounds while taking Lyrica. FORTY. This medication is BULLSHIT. I'd rather be in pain than gain weight like this. I'm enormous. I had to buy all new clothes. My boobs are so big I can hardly move around them. My tummy is big and jiggly. My thighs are...well, you get the picture. I'm fat! Thanks, Lyrica! Thanks for making me fat!

I've been putting off updating because there's so much to update about that it's overwhelming. The problem with writing a big entry is that my hands are still numb and one of the meds I'm on makes my eyes blurry and gives me double-vision, so I make a metric ton of typos. I've never been away from LiveJournal for this long, though, and I feel like I'm totally sequestered from the world. I'm just going to start posting again and include bits and pieces of what's happened over the pasrf yeaer with each entry.

I should start off by telling you that the disease I have is called Guillain-Barre Syndrome. And it's not even a disease, really. It's called a syndrome because modern medicine doesn't know enough about it to call it a disease. It's very rare and strike people so differently that it's hard for doctors to gather muuch information on it (plus, it can't help that there are neurologists, like the one who diagnosed me, who are so appathetic about the diagnoses and treatment of it that I can't immagine they'd contribute any data). So, there's not much to go on as far as treatments. My physical therapist wants to write a paper on it with me. We used a device called a "TENS unit", which applied light electrical shocks to some of the nerves around my spine, in effect canceling out the crippling nerve pain I was feeling. There hasn't been a paper written on this treatment since the 70's, so it's an important thing to do, I think. I hope it would help other people suffering the same symptoms.

This is what I've been doing for the past eleven months. It's been rough, man. And I've been pretty miserable and depressed. I'm sorry I've avoided some of you -- have promised to call and then didn't. I've been low. But I think it's getting a little better and I think reaching out to the outside world and making contact again will help. I've missed you guys

There's some kind of birdpocalypse going on outside. I've never heard so much angry tweeting.

Back in the hospital.  I don't know when I'll be discharged. Doctor said 1-2 weeks.  I'm hoping for sooner than that.  My roommate this time is a total horror show.

Thank you all for your support.  I love all of you THIS MUCH.

I've been sick and it's a really long story. I just got out of the hospital today. I'm partially paralyzed from the waist down and from my elbows to my hands. Do not freak, though. It's a temporary paralysis. With physical therapy, I should make a full recovery in a few months.

So, that's where I've been. I'll tell y'all the whole story when it doesn't take 878573975 years for me to type everything.

It's fucking awesome to be home.

Does anyone know what the first track on this website is? I'm pretty sure it's Ludacris, but I can't find it.

http://www.ricomartinez.com/

I MUST HAVE IT.

And I sure did forget to post that I was going to be off the grid in rural Maine. So I'm back, and I'm never ever going to be able to catch up on the internets.

Speaking of hair, I thought that the medium brown I dyed my hair would fade out into something that would blend into my natural color.

Well, I was wrong. When I pull my hair back, I have an inch-wide strip of golden blonde framing my face. It looks RIDICULOUS. But my hair is sad and I don't want to dye it again, so I'm stuck.

I've made the executive decision that I'm going to start posting daily entries about my stupid life. I like it when other people do that, so it seems reasonable that I should do the things I appreciate in others.

Also, here are some other places I use:

Flickr

Twitter

I am on Facebook in a not-really sort of way, and also sometimes Whitechapel. Warren Ellis is a little bit scary (or as another friend who shall remain nameless put it, "psychotic in the most adorable way"), though. And I'm very bad at forums, too, so the time I spend there is pretty minimal. Usually just a morning browse.

WOLVERINE MOVIE TRAILER

MANLY BRAWLING

FAVORITE

OMG

SOY CAUSES PROMISCUITY.

FOUR OUT OF FIVE DOCTORS HAVE READ A STUDY THAT CONCLUDED THAT THIS IS POSSIBLY TRUE.

PASS IT ON.

Dear Food,

I miss you.

Love,
Kiki

PS. Tell Booze I said, "Hey!"

Craig Ferguson (my favorite late night host, since I broke up with Keith Olbermann) did an uncharacteristically serious and fascinating interview with Lance Morrow about his (fairly old) book, Evil: An Investigation.

This is a subject in which I'm interested and spend a lot of time thinking about. Writing as I do, the question of what is evil (and in a narrower sense, what makes a "bad guy" versus a "good guy") is a fairly natural one. I do not, myself, believe in the concepts of good and evil. I believe in science. I believe in free will. I believe in choices. Man's ability to use the rational mind and make those choices is both an incredible gift and a terrible curse. When someone makes a choice that one finds unconscionable, it's tempting to rationalize that choice as being evil, or as they mention in the interview, born of illness, rather than accepting that a human being would make a decision that does not fit one's accepted system of beliefs.

I'm going to pick up that book, I think.

United Steel Workers of Montreal, you guys. United Steel Workers of Montreal. I love them AND SO MUST YOU.

I've been listening to "Number 4" ALL DAY. Here. Download it. You'll see.

The left hinge of my jaw is so swollen that I can't even talk, much less chew anything. I can barely get my pills between my teeth. I think I have some grits in the cupboard (which may or may not be left over from when my Southern grandmother was still alive...in 1997), and I made a big pot of squishy lentil soup yesterday. With that plus whey protein powder and Carnation Instant Breakfasts, it's possible that I won't starve to death before my next appointment.

I have labs on Monday and a rheumatology appointment on Tuesday.

I am really, really tired of life.

Dr. Horrible's Sing-Along Blog has been totally ruined for me. For personal reasons, I cannot watch it, and I SWEAR TO GOD, if one more person asks if I've seen it, I am going to go the fuck off.

My rage requires many commas.

ETA: I have, however, read a lot of the meta on it. And you know what? Y'all are wicked smart.

I've been on new meds this week, hence the radio silence. One of their many lovely side effects is insomnia. I went to sleep at 2:30 this morning and got up at 5:30. Also this morning. So. Three hours. I don't like getting up at 5:30. It is bad.

You guys. No brain function left. None.

Apparently this makes me a better guitarist, though. I learned, like, five Chris Isaak songs, today. Not that Chris Isaak's songs are in any way difficult, but they're fun, and I just sort of rattled them off without thinking about it.

Drool.

OK. Hopefully I'll be back next week with some kind of smartiness intact. I can't even reply to comments like this. Srry. I have yet another rheumatology appointment tomorrow, where we will talk about my 34802910234 blood tests and eleventy-twelve x-rays, and then with any luck we will come to the conclusion that I no longer need to take the Made-of-Satan meds.

Maybe then I'll be about to talk about SGA and how it is made of so very much fail and all of my shows hate me and I give up.

Oh god. I'm so uncomfortable and semi-delusional.

OK. Done.