I got a humidifier yesterday. I put about a gallon of water into the air of my little apartment, and fell asleep.
When I woke up my nose was moist, if a little runny. So much better than the barren desert craggy nasty bloody snot crust lesions I have spent the last two months waking up to.
nice mental image, eh?
I have been on Atarax for a week, and it is really helping with the itching and the dysesthesia. Atarax is a high powered antihistamine. The Dr put me on 50mg 3x per day, and that was quite a wild ride. I pretty much was stoned and staring at the wall, or sleeping. I cut the dose in half, and am taking it 4 to 5 times per day, and the effects are more even, and i’m less zonked.
The really good thing is that my dysesthesia symptoms are markedly reduced. I guess the idea is that the dysesthesia is happening in the nerve endings, so if you dull the inputs via an antihistamine, it will reduce the chances of the dysesthesia. Or something like that. Regardless, it is working. Which is not to say that I am not having episodes. i have had several, but whereas I was having one bad episode per day, and two to five moderate episodes, now i have one bad episode every few days, and one mild episode per day.
Strangely, though, I have been having more episodes at night; waking up from nightmares in full pins and needles. And generally having restless nightmare filled sleep.
It is 7:45 on Saturday morning, and I can’t get the taste of blood out of my mouth. I had awful dreams last night, including a kid who had his classmates pee all over him, then set himself on fire (and died) all for a youtube video, my girlfriend calmly explaining that she had been sleeping with a 17 year old (but she had realized he wasn’t the one for her), and having to sit through an awful experimental noise music performance, and then blood. Dreaming of blood. Dreaming of drowning in blood.
I think that part of your brain that thinks “wait! this might be real!” kicked in. It is the same one that kicks in when you are having a dream about peeing. It kicked in, and i woke up coughing up blood. It was dark in the room, but i could tell the darkness of the blood against the white tissue I rubbed against my mouth.
I have been having lesions in my nose for a couple of weeks. They don’t heal, but they produce these hard angular scab crusts, which often dissolve when I neti. It is raw and painful. Hard to breath at times. And quite noisy.
I spat out a lot of the blood into tissues, and held my nose where the blood was coming from. The jagged scabs made it quite painful. I filled five tissues with coughed up blood. I ate cereal. And I still have the taste in my mouth. I wonder how long I was bleeding before I woke up?
And I am now here by myself.
Before I went to sleep, we raised a toast with the leftover champagne from his Sunday party. I had less than half a glass, but on top of the other drugs I am on, I was nearly immediately woozy. I slept harder than I have in months. I woke up in the middle of the night to turn off the fans, and walked into more than one wall or piece of furniture. Very deep, heavily drugged sleep.
Today is the first transitional day to Fall. Its not Fall yet, but it isn’t Summer anymore. Last night I didn’t have to run the AC, and I even turned off the fans in the middle of the night and put on the duvet.
So this morning it is twice as quiet. No S, no whirring air.
I woke up from a dream in which I was crying. I was crying in the dream. I don’t think I was crying physically, though I woke up with all the emotions of crying. The dream was an extended “I forgot to wear my clothes” dream. As a teacher, these dreams happen to me. Once I actually forgot my clothes, but that is a whole other story. Usually I am not worried about being naked — I worry about the other people made uncomfortable by my nakedness. but this time I was worried, even though I did have underwear.
In the dream I got into an argument with my father about underwear — this make no sense, b/c it was a dream, but I think I was borrowing someone’s iPhone to watch a youtube video about underwear, and my father got angry because I he had ironed my underwear, and that was not enough, i had to go look at underwear too! This, of course, makes no sense because my father doesn’t ever do my laundry, and i have never in my life had ironed underwear. That might be fun.
Somehow we were all outside, surrounding a school bus. I was in the bus. Everyone was outside. I cursed angrily and threw my housekeys at the front window, which made a small chip or crack in the window, and walked out of the bus. The outside turned into the tightest bend in the street that I grew up on, and I started walking through tall grass in the direction of my parents house. Crying. I was in front, but I could feel the presence of my brother walking with me, to my left and a pace behind me. Some other people, who might have been friends or might have been relatives broke off from the group and started walking behind me. I was still crying in the dream. Then I woke up.
I have a habit of having the most obvious dreams. Really unsubtle…
On top of all this, I think I’m getting sick again
The good news is that I have started meditating again. I’m going to a class w/ O. Its Yoga, not the kind I did before. But close enough.
I’m at a conference in Banff, Canada. I gave my presentation yesterday. I’m feeling pretty sick today
I had the weirdest rough night. i think im getting a cold. My room is really too hot, but I can’t control it because there is only one window and it is 12 inches square. Really weird design.
I injected last night. and crashed to sleep. woke up ~5hrs later totally out of it. this seems to be a new trend in the injections: waking up 5 hrs later. I was really out of it. the wildest part is that i wake up and go to the bathroom and was so out of it i didn’t lift the toilet seat cover! and peed onto the closed toilet!!!
i mean i had a quick reaction time and only splashed a little bit on the seat. and kinda threw a towel on it and the floor. and washed off my legs. and was back asleep immediately. but it was really surreal. to be that out of it.
and then i woke up later with chills. haven’t had them for weeks. i think the altitude is making it worse. supposedly ppl only drink half as much up here at alititude. so it must affect all drugs?
i slept through my alarm, but i pulled myself out of bed to catch breakfast right befor it closed. food is in this big cafeteria. but no one was there. they had all gone off to their conferencey things. i sat in the farthest scenic corner and struggled to eat my food. I’m having trouble with food again. I have no appetite, and it is not appealing.
but also it is the cafeteria effect. i dont know how much to eat. i have to point of reference: these are not my bowls. i dont know how much cereal i’m putting in. i didn’t prepare the food so i have no idea what size portion i am putting onto my plate. because my own hunger is unreliable, i’ve been relying on measurement to know how much i need to eat. i’ve figured out routines. but here, i have no frame of reference. probably the best were bean quesadillas. i mean they were shit quesas, but it was plain and filling. and i knew how much i was eating and how much i would want! there was a standardized quantity. totally disorienting.
It is kind of amazing to feel the side effects of the Interferon coming on again. Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.
This morning I had my first “I don’t feel like eating anything in the whole world” feeling.
This evening I felt the sleepy undertow. I lied down around 6pm, and felt like I could just go to sleep. I felt like it was going to be so hard just to get myself up. I had a friend coming for a walk at 630, so I forced myself to get up.
So all my old friends are back. Fevers, Loss of Appetite, and Exhaustion. Side effects make constant companions.
I will fight them, though. I will fight them with water, food, exercise and meditation.
I sound rediculous, right? I’m just reminding myself. I guess I don’t really care what I sound like b/c I know it will work.
i hope i’m not speaking too soon, but this morning i just feel like i am a little bit hungover. like three glasses of wine hungover. i slept through the night. i shot up around 1am. its 11am now. i slept 9 hours. if i had chills and fever i was able to sleep through them.
It was relatively cold outside (74 or so) so S proposed not using the AC last night, and just having lots of fans. So it was in the high 70’s. Maybe that helped.
Tired, achy, and sick feeling, but this round was a whole order of magnitude better than the first round.
it seemed like it was going to be an easy round this time, but i spoke too soon. I went through a mild round of chills and fever, felt better, and went to sleep around 11, drugged and seemingly peaceful.
Â
I woke at 130am with the worst chills I have had yet. Much worse than the first night I started the much higher IV dosage. I tried to get warm with the heating pad and relax as best i could, but my muscles were on the threshold of spasming and going into shakes. Shivering at the top of the stairs, I called S for help.
He turned the AC off, brought luke warm water, warmer sweatpants, a winter down blanket, arranged the heating pad, and held my hand until I/my body had calmed down enough that i was not shaking anymore.
Sometime later I realized I had started sweating. It is amazing how I can’t notice that liminal moment when I transition, I only notice once I am already overheated and feverish. I pushed all of my warm stuff off and crawled out of bed. I think S was there by the time i got out into the living room. AC back on, ice packs on the chest, drinking cold water.
The fever was still going strong when S went to be around 3am. I tried to get to sleep. i took even more sleeping drugs. my mind was racing, and my body was aching. i tried to meditate. i tried to do guided visualizations. i listened to Music for Airports. and still I was sweating, and tossing and turning with no real chance of sleeping.  It reminded me of the second day of IV infusion, when I couldn’t sleep all night.Â
As the sun started to come out, sometime before 6am, I thought I might try to sleep on the couch. sometimes moving into a new bed helps me. its like i think i’m starting the getting-to-sleep process over, with a clean slate. i pulled off the cushions, brought out my pillow and sheet, set down my liter jar of water, and went to put away my ice pack. coming back to the couch i forgot about the water, and kicked it over, spilling a liter of water on the floor and splashing it all over the sheet and cushions. it was too much. i just sat down on the wet couch and cried.Â
it felt good to cry. i was really frustrated. and i couldn’t really express it. and i haven’t cried in some time. and the crying was maybe the thing that made me tired enough that no matter what, i was going to be able to sleep.
I finally slept around 7am. I woke around 1030am. i feel like i got hit by a truck. or maybe like i did a hard workout, then drank a six pack on an empty stomach.
what i don’t get is why there were two waves of chills/fever, why the second one was worse, and why the self injection seems to have such stronger side effects, at least on the first night. I guess mainlining any drug is the best way to take it. Maybe that or snorting it. LOL.
so, my mind was racing the whole time. i kept remembering things i needed to do. and ideas i had had but had forgotten, and questions i had, and thoughts i wanted to remember. so i wrote them down in the book O gave me. in the dark. my handwriting is bad enough when i can see what i am writing. check out what it looks like when i can’t. I think i will be able to decipher these runes. I think so, but it will take an effort.
Â
I went up to the hospital today. I had an ultrasound to verify the presence of my veins and blood flow in them. My Dr did this experimental procedure that I’m not really supposed to talk about. And this was part of his documentation process.
And I also saw my Psychiatrist, who it turns out has been following the blog. It was pretty amazing to talk about something, and have him reference something else I had written down in here. To complete the self referentiality, we might talk this shout out when I see him in two weeks.
I went in to the studio for a bit, then came home and totally crashed. I got up at 7:30 to make it to my 10am ultrasound. By the time I returned home at 5pm I was totally spent. I had a couple of errands to run, and I was getting ready to leave to take care of them when I realized I had a migrane level headache, and was slurring my words. leaving my to do list and packed bag of things to drop off or mail off, I kind of collapsed onto my bed.
I have taken to napping since I was diagnosed. I have observed that a short rest-without-sleep will revive me when I get sluggish or dizzy or just plain tired. BUT, a sleeping nap is more likely to screw things up more. So going down for a nap is always a precarious thing. This time the undertow was so strong, I had no power to avoid it. I lied down on the bed, and really felt pulled down into sleep. I woke up some time later, and stumbled into the bathroom to take a Tylenol 3 with Codeine, and stumble back into bed. I finally woke at 10pm. It was one of those sleeps where my teeth hurt when i woke, and I was really unsure whether I felt better or worse after it all.
I went in to the studio today. I was around for a little over 4 hours. Mostly checking in with people, saying hi, writing email etc. Between the work effort and the viciously hot-and-humid commute, it was too much. I came home at 5PM and passed out soon after. Its 9:30PM and I just woke up. I’m groggy and basically need to go back to bed.