My white blood cells are down to 2.3. Acceptable range is 3.5-9.5. The doctor’s PA is going to speak to him and let me know what they want to do about it.
In the mean time, that might explain why I keep getting ulcers in my mouth. My tongue has been feeling funny, and i looked at it in the mirror, and sure enough, its got funny spots, splotches, cracks, and bumps on it. These don’t hurt as bad as the ulcers on the gums.
A couple of days ago I woke up early and rode my bike around the park. It was really cold; it was 50 degrees, and had been in the 70’s for the week previous. So I was cold at first, though nothing new. But halfway around the loop my pins and needles came on quickly and really strongly. Normally it only kicks in at the end of the first lap, and it goes away.
I pulled over to the side of the road. Took off my long sleeve jersey, and pulled up my undershirt. I almost took it off too. I waited for a bit to cool down. Me, standing in spandex biking shorts and a white t-shirt pulled up to my armpits. After a few minutes I realized I wasn’t going to get much cooler. I rode back in the t-shirt, with that awful pins and needles feeling, just trying to make it home.
tomorrow i’m going to go see a psychologist who specializes in visualization, with a focus on hypnosis and self-hypnosis. We are going to work on techniques for visualizing the freezing air conditioned server room at the studio, where I go when I overheat.
The idea of hypnosis freaks me out a bit, but the idea of what we are going to work on is fundamentally sound. I have started to try to think about that room when the overheating/pins and needles feeling is coming on, and it helps moderate the severity. I can’t quite make it *stop* right then and there, but I can make it better. So better visualization skills should help.
in other news my mouth is raw again. not as bad as the previous three(?) times, but the cycle feels like it is still waxing, and will get worse before it gets better.
I have been noticing that I have been not-exactly-seeing-things, but having weird visual perception ticks. I see movement where there isn’t anything moving. Its like I am seeing cockroaches, or bugs, or something, but then i freeze my vision, and concentrate, and they’re not there. Objects and shadows seem to be in motion. This is recent — last two to three weeks, and I only really articulated it as a pattern in the last few days. I remember my psychiatrist asking me about seeing things & hallucinations in one of our initial meetings about the drugs. So I am going to head up to Columbia and we’re going to talk about it…
man… hallucinations! i guess that is the proper term for not-exactly-seeing-things. i never thought i would have hallucinations, as i stay far away from those kind of drugs…
I had a melt down earlier today.
I’m doing better now.
I’ve been in and out of the server room and its refridgeration.
Feeling calmer, more in control of the chaos.
im sitting in the server room at the studio, where it is perpetually 64 degrees, or cooler. there is an industrial AC unit that runs 24/7. even in the winter.
i kinda figured out how to deal w/ the hot flashes and pins and needles when i wait for the subway.  it seems to happen every time i go into the subway, about 45 to 90 seconds after i walk onto the subway platform. so i decided today to just hang out at the top of the stairs until the train was passing. then i shuffled down the stairs into the subway. no pins and needles on the subway platform.
BUT
the pins and needles hit with a fucking vengence at the very end of the bus ride over to the west side highway. i unbuttoned my shirt, and was scratching at at my stomach, and arms and legs like crazy. it seems they have turned off the AC on the buses, or mbe just this one. my body just flat out freaked on me.
i got to the studio, and couldn’t get the AC working. went up to the kitchen looking for some ice; just the other day, the freezer was full of ice, but today it was empty save one sketchy looking 3 x 4 inch ice pack. i rubbed it all over my arms and belly, only to discover it had frozen soda on it, or something. so then i washed in the sink. what a sticky mess.
it was weird storming around the lab trying to make the AC work, trying not to cry, trying to figure out how to get some food (i called for takeout, but no one was picking up their phone) and everyone was either on the phone or had their earphones on. i wanted help, but i was embarrassed to ask for help b/c i didn’t want to have explain or something, and everyone was in “ignoring mode.” it is my responsibility to ask, but sometimes you just want someone to notice you, and ask if you need help. old-lady-on-the-bus syndrome.
so here i am in the server room. my assistant is out standing in line at the sandwich shop getting food.
EL called right when i sat down in the server room, and i was breaking down and crying. and he gave me a good talking to about how i can’t let myself freak out over external pressures. my health is more important than anything anyone could ask of me to do. No deadline is as important as my health. Gosh… deadline == dead line. um. that’s morbid wordplay. but maybe it will help me focus on not letting the deadlines takeover.
Its really hard. I’ve started so many things that are in motion that are controlling my time. I mean this book i’m working on, I started it over a year ago. there are a bunch of things like that, which I can’t get out of, are already set in motion, and involved at least one other collaborator, if not a team of people. and there are things like a printer deadline and the fact that the book is already up on amazon. seeing the book on amazon really freaked me out. that made the deadline real in this whole other way.
The hole in my skin left by the mole that was removed 2.5 weeks ago is finally starting to form a scab. It was infected and raw for most of that time. The Interferon prevents the healing of wounds. Which is why I had to wait extra time until my surgery scars were healed before I started.
Surreal to have a pretty small (.5cm diameter) wound take 2.5 weeks to *begin* healing. BUT, I’m just glad that I don’t have to take a drug holiday for it to heal.
i’m kind of rough. back up to full dose again, post immunosupression. been experiencing a whole lot of side effects. lots of physical discomfort. (that’s a nice euphemism.)
O told me today that i have been forgetting things. as in, she tells me things, or i do things, and then don’t realize that i have already been told this, and ask about it. or don’t realize that i have already done something. (or more likely: not done something.) i mean, i knew before i was forgetting things. but now, it seems that i am forgetting things and *not* realizing it. this has been freaking me out today.
also, lots of pinprick sensations. the heat rash + hot flash thing. in the middle of public i just want to pull off all of my clothes and scratch frantically at my skin. sometimes i pull off all of my outerlayers, and scratch at my skin under my undershirt. only in new york, right?
actually i wish i was (sort of) in china. i mean, it would be much hotter there, but in the summer the men in china all pull their shirts up over their bellies. i think that is the most brilliant move. all these old men with formal slacks, leather shoes, pulling their shirts up over their bellies. their nipples stay covered! but they get some cooling.
O is sick. She writes:
I’m not really hungry but i haven’t eaten and want the comfort of
comfort food (sound familiar?) so i’m going to call the diner for
delivery and then just stare at it when it arrives.it’s a mystery to me what this is. my sore throat is super mild, it’s
just headache, body aches, and total fatigue. i think i might also
have a low-grade fever. i’d say that i really hope you don’t catch
this, except that i know these symptoms already define your every
day….
sad but true. and well put
I have mouth sores again. This time its not ulcers like the previous two times. But a swollen bump in the right side of my tongue. More towards the bottom, but inside. It feels like a sebacious cyst in hardness, but it hurts to the touch. And it appeared rather quickly. Probably just another viral infection, which will hopefully pass w/ none of the fanfare and asskicking of the last one.
In other news, I switched my injection days to Sunday, Tuesday, and Thursday evenings. I was going in to the studio Tuesday and Thursday after injecting the night before, and it was just plain not fun. So I switched so I can lay low the days after injection, and be fresher when I am in the studio.
From O:
Uh, this was the first google result, but not the one i intended:
http://query.nytimes.com/gst/fullpage.html?sec=health&res=9806E7DB1239F932A35753C1A963948260
it’s from 1985! it said “‘It’s been a medication in search of a disease.'”
shit, and look at this from 1983:
http://query.nytimes.com/gst/fullpage.html?sec=health&res=9807EED71239F931A15750C0A965948260
early AIDS crisis! oh wow, it contains the sentence, “Most researchers
believe AIDS is caused by an unknown virus.” actually, that’s a super
interesting article, from an historical perspective…i am totally liveblogging this google search!
ok, actually, there are almost 6,000 NYT articles related to IFN:
http://query.nytimes.com/search/sitesearch?query=interferon&srchst=csesuper interesting. lost of uses, lots of side fx…
this is the one i was looking for:
http://health.nytimes.com/ref/health/healthguide/esn-hepatitisC-ess.htmlyours in sleeeep