I have neglected my blog. In all seriousness, I was spaced-out and completely exhausted by the end of my hospital stay, and could not bring myself to type coherently after Day Four. I also walked away very, very... frustrated, and therefore gave up for a while. I have just returned from another trip to the University of Virginia and feel motivated to yammer about my crappy disease at the moment, so let's get this ball rolling!
On Day Five in the hospital, I managed to stay up all night. This meant that I had two nights in a row of sleep deprivation. It was excruciating! I know I drifted off, because my perpetual watcher had to ding the intercom bell several times to wake me up. I made sure to SLAM my cup back on the table after I took sips. I also had trouble hearing the tv over my roommate's various emanations, so I quite generously amplified the volume. I did keep my light off though - wouldn't want to keep anyone awake.
Was I being a a bitch? Yes! So very yes! I'm a nice and considerate person in general but come on! Being in the hospital was not easy, and by that point in the stay, I had lost the inclination to be a doormat when the offender was a disgusting, selfish, unclean, mean, inconsiderate, festering blob of a person.
Regarding my "unclean" comment above, I can't help but mention that by DAY FIVE (that's right, FIVE), my roommate had not (a) brought a toothbrush into the bathroom with her, (b) washed her hands after using the toilet, or (c) accepted the nurses' many (many) (many many) offers for wipes with which to take a sponge bath. In hindsight, I wish that, after she said no to the offer of cleansing goods, I had pulled out a sheet of paper and written a note to the nurses insisting that she bathe.
People like my roommate are the reason that we have food poisoning and epidemics. Also the reason that I hate touching doors and handrails and... blearg!
14 November 2009
13 November 2009
UVA Hospital: Day Four
Today I am TIRED!! I slept from about 6-8am, woke up for breakfast, and had just settled under the covers when the nurse comes in and says, "Sorry honey, the doctor ordered sleep deprivation." I had to stay up the entire day, and have a rough night ahead of me. I feel spacey, and when I close my eyes the world spins. I've downloaded Zombie Pizza for my iPhone and hope it helps get me through the night.
I'm a bit frustrated that my brain isn't "cooperating." Stagefright, not cool!
Worst part of today. My roommate is on her side of the curtain making big sighs. She turns out her light early and about half an hour later gets up and stomps around. I hear the sound of paper and scribbling, then a PHOOMP back into bed. At 11pm, a technician comes in to check our vitals. We chat about my iPhone lifeline and the show on tv. Nice guy! Then he moves over to my roommate. I hear normal
blood pressure machine sounds and then it gets quiet. Really quiet. Technician walks away, then comes back and says, "Is it ok for you to turn out your light? Your roommate might punch me if you don't."
Before I summarize the conclusion I think you will all share, let me note that I am sooooo quiet in here. I'm afraid and nervous and this amplifies my introversion. My roommate likes her tv loud, and is not shy about sleeping with both her tv and light on. Not to mention the incredibly loud bodily noises she emits.
So, really, did she demand that the technician have ME turn MY light off because I'm disturbing her sleep? REALLY? And was she such a child that she did it by passing a note? Even though I'm the one that has to stay awake all night, I turned off my light. But I did turn up my tv volume and am making no effort to be quiet. Hypocrite!!
Best part of today was getting an adorable photo of kitty sleeping on hubby and looking so amazingly happy. Smiles all around!
I'm a bit frustrated that my brain isn't "cooperating." Stagefright, not cool!
Worst part of today. My roommate is on her side of the curtain making big sighs. She turns out her light early and about half an hour later gets up and stomps around. I hear the sound of paper and scribbling, then a PHOOMP back into bed. At 11pm, a technician comes in to check our vitals. We chat about my iPhone lifeline and the show on tv. Nice guy! Then he moves over to my roommate. I hear normal
blood pressure machine sounds and then it gets quiet. Really quiet. Technician walks away, then comes back and says, "Is it ok for you to turn out your light? Your roommate might punch me if you don't."
Before I summarize the conclusion I think you will all share, let me note that I am sooooo quiet in here. I'm afraid and nervous and this amplifies my introversion. My roommate likes her tv loud, and is not shy about sleeping with both her tv and light on. Not to mention the incredibly loud bodily noises she emits.
So, really, did she demand that the technician have ME turn MY light off because I'm disturbing her sleep? REALLY? And was she such a child that she did it by passing a note? Even though I'm the one that has to stay awake all night, I turned off my light. But I did turn up my tv volume and am making no effort to be quiet. Hypocrite!!
Best part of today was getting an adorable photo of kitty sleeping on hubby and looking so amazingly happy. Smiles all around!
11 November 2009
UVA Hospital: Day Three
Tonight I plan on staying up all night, to see if sleep deprivation will help spice up the seizure situation. Don't worry, they want me to seize, and I'm very safe here! I hope that my iPhone and one remaining unread book (Terry Pratchett, "Men at Arms") are enough to get me through!
I did score a cheeseburger today, and banana pudding. Score!
My roomie continues to fart, obnoxiously. You may think that all farts are obnoxious, but they're not! For example, those little accident toots that everyone makes sometimes, those are fine, sometimes endearing if the person is family and you can joke about it for several years. But this lady is really out of control. She woke me up with a really loud one last night, and tonight it is *faaaaaart* - "Mmmmmmmm". Repeat. ZOMFG. In other roommate news, she hasn't brushed her teeth or spongebathed in her two days here. Unless I am completely out of it. Which I doubt, because she has to be escorted to the bathroom/sink which involves a really loud pager and intercom.
Now that I've broached the bathroom topic solidly, here's how his works here. I realize that nature calls. I have to push a big red call button on my giant universal remote (tv, lights, stewardness, temperature, room service, foot massager... ok, maybe just the first three). The box beeps to confirm that my page was processed, and then the voice of God (or the nurse in charge of the monitoring station, they sound similar) speaks over an intercom built into my mondo remote.
"ARE YOU OK," booms the voice.
"Yes!"
"ARE YOU SURE?"
"Yes, thank you!"
"TELL ME YOUR NAME"
"But you're God, don't you know me?"
"SMARTASSES DON'T GET PUDDING."
"But I ate my meat!"
*insert sound of my name being scratched off the pudding list*
"Really, I'm ok. I just need to use the bathroom."
"WHAT?"
"I need to use the bathroom."
"WHAT?!!"
"I NEED TO PEE!!"
"Oh. No need to shout. The pee warden will be with you shortly."
Small pause. The nurse or patient care trainee comes over and escorts me the seven feet or so to the toilet and stand outside the door while I do my best to quietly tinkle. What happens next is like coming out of the bathroom in a restaurant and returning to a table at which mom awaits (Love you mom!!)
"ARE YOU OK?"
"Yup"
"DID YOU HAVE A BOWEL MOVEMENT?"
This being a hospital you have to answer. Even though you're sure they know anyway because they were standing outside the door! So every day you must be prepared to answer the following questions, several times per day:
(a) DID YOU HAVE A BOWEL MOVEMENT? (Pardon the caps, but it always feels like this question is asked too loudly)
(b) Do you have any pain or tingling?
(c) Can I get you anything?
(d) What is your name?
(e) What is your birthday?
(f) What is today?
(g) Where are you?
I have yet to say yes to (c) because I'm a chicken. But my roommate gets cokes and extra pillows and double cheeseburgers and sugar cookies. And, for the record, they do accept smartass answers to question (f), such as, "The day before tomorrow." Haha!!
I am wildly bored. And stressed out. I don't like sleeping in a room with the door open and only a blanket to snuggle. I don't like the constant flux of people coming and going (food services, housekeeping, anyone going past me to see my neighbor, nurses, residents, doctors, volunteers, etc etc) when I have nowhere to go. I dislike my roommate's barefeet and lack of manners and cleanliness. I don't like being tethered or being watched by someone 24/7 (yes, the video camera is monitored by a person who moves the camera with a joystick to follow me whereever I go). I don't like using the bathroom with someone right there (anyone else have a shy bladder?) But, all of this is in my best interest to find a bettter solution and better health for me. I'm doing this for me! And for you, since you're the ones that have to chauffeur me and cater to me and deal with my grumpiness when I don't feel well. For which I love you mightily!
I did score a cheeseburger today, and banana pudding. Score!
My roomie continues to fart, obnoxiously. You may think that all farts are obnoxious, but they're not! For example, those little accident toots that everyone makes sometimes, those are fine, sometimes endearing if the person is family and you can joke about it for several years. But this lady is really out of control. She woke me up with a really loud one last night, and tonight it is *faaaaaart* - "Mmmmmmmm". Repeat. ZOMFG. In other roommate news, she hasn't brushed her teeth or spongebathed in her two days here. Unless I am completely out of it. Which I doubt, because she has to be escorted to the bathroom/sink which involves a really loud pager and intercom.
Now that I've broached the bathroom topic solidly, here's how his works here. I realize that nature calls. I have to push a big red call button on my giant universal remote (tv, lights, stewardness, temperature, room service, foot massager... ok, maybe just the first three). The box beeps to confirm that my page was processed, and then the voice of God (or the nurse in charge of the monitoring station, they sound similar) speaks over an intercom built into my mondo remote.
"ARE YOU OK," booms the voice.
"Yes!"
"ARE YOU SURE?"
"Yes, thank you!"
"TELL ME YOUR NAME"
"But you're God, don't you know me?"
"SMARTASSES DON'T GET PUDDING."
"But I ate my meat!"
*insert sound of my name being scratched off the pudding list*
"Really, I'm ok. I just need to use the bathroom."
"WHAT?"
"I need to use the bathroom."
"WHAT?!!"
"I NEED TO PEE!!"
"Oh. No need to shout. The pee warden will be with you shortly."
Small pause. The nurse or patient care trainee comes over and escorts me the seven feet or so to the toilet and stand outside the door while I do my best to quietly tinkle. What happens next is like coming out of the bathroom in a restaurant and returning to a table at which mom awaits (Love you mom!!)
"ARE YOU OK?"
"Yup"
"DID YOU HAVE A BOWEL MOVEMENT?"
This being a hospital you have to answer. Even though you're sure they know anyway because they were standing outside the door! So every day you must be prepared to answer the following questions, several times per day:
(a) DID YOU HAVE A BOWEL MOVEMENT? (Pardon the caps, but it always feels like this question is asked too loudly)
(b) Do you have any pain or tingling?
(c) Can I get you anything?
(d) What is your name?
(e) What is your birthday?
(f) What is today?
(g) Where are you?
I have yet to say yes to (c) because I'm a chicken. But my roommate gets cokes and extra pillows and double cheeseburgers and sugar cookies. And, for the record, they do accept smartass answers to question (f), such as, "The day before tomorrow." Haha!!
I am wildly bored. And stressed out. I don't like sleeping in a room with the door open and only a blanket to snuggle. I don't like the constant flux of people coming and going (food services, housekeeping, anyone going past me to see my neighbor, nurses, residents, doctors, volunteers, etc etc) when I have nowhere to go. I dislike my roommate's barefeet and lack of manners and cleanliness. I don't like being tethered or being watched by someone 24/7 (yes, the video camera is monitored by a person who moves the camera with a joystick to follow me whereever I go). I don't like using the bathroom with someone right there (anyone else have a shy bladder?) But, all of this is in my best interest to find a bettter solution and better health for me. I'm doing this for me! And for you, since you're the ones that have to chauffeur me and cater to me and deal with my grumpiness when I don't feel well. For which I love you mightily!
10 November 2009
UVA Hospital: Day Two
Today I got a roommate! She listens to VERY LOUD tv, and belches a lot. She apparently got moved out of another room
which had a child and family who "wanted more space." Hey!! I want more
room!
I got a visit from the big cheese neurologist today, together with the resident and main day nurse. We talked about background history, and they decided to stop all of my medicines to try to expedite seizure action. That was expected. As they left the room
and walked down the hall, the big cheese said, "She's interesting..."
but I couldn't hear the rest!! Drat!!
One more point if interest today was that I was "paged" five times by the person doing the video monitoring to see if I'm
ok. They aren't doing that to my roommate, so I wonder what I'm doing to
prompt it? I will ask the doctor tomorrow.
Otherwise, I am hot, have a headache, and feel slightly nauseous. Is this med withdrawal?
which had a child and family who "wanted more space." Hey!! I want more
room!
I got a visit from the big cheese neurologist today, together with the resident and main day nurse. We talked about background history, and they decided to stop all of my medicines to try to expedite seizure action. That was expected. As they left the room
and walked down the hall, the big cheese said, "She's interesting..."
but I couldn't hear the rest!! Drat!!
One more point if interest today was that I was "paged" five times by the person doing the video monitoring to see if I'm
ok. They aren't doing that to my roommate, so I wonder what I'm doing to
prompt it? I will ask the doctor tomorrow.
Otherwise, I am hot, have a headache, and feel slightly nauseous. Is this med withdrawal?
09 November 2009
UVA Hospital: Day One
As many of you know, I am checked into the Epilepsy Monitoring Unit at the University of Virginia hospital. In brief, after several years and half a dozen or so medication changes, I just don't feel good. I'm tired all of the time, my memory is not what it should be, and I'm unable to live the life I want or fully enjoy the life that I have. After a "quality of life" discussion with my local neurologist and reaching an understanding that medications are unusually complicated for me, he referred me to the epilepsy specialists at the University of Virginia.
So here I am.
The trip here was beautiful. Floyd drove me up here in my Taurus and mapquest's fastest route involved driving past quaint towns, on scenic byways, and past stunning landscapes like rocky crags near Old Ragtop Mountain. It was glorious! Parking at the hospital was a rather abyssmal end to the otherwise lovely drive. There was one garage that was packed, but the lady in front of us was driving crazy. She pulled into a ridiculously narrow spot between two long trucks and came a sliver away from ramming one truck's bumper. Oh so close. We drove up for what felt like a dozen levels before we scored an uber spot on the same aisle as the stairwell. But really, parking here was traumatic!! Even Floyd commented that it would have been soooo much better to have Mom driving with her handicap parking tag. Yes, I'll admit it, I would have mooched her phat parking priviledges.
Once I got here, I was funneled to the EEG lab on the basement of the primary care center, where they hooked up a bunch of electrodes to my scalp. The process involves measuring my skull, marking a bunch of Xs in red all over my head. The technician had to deal with my very long hair, and told me that the EEG tehnicians all fight over the bald men! After marking me up, she scrubbed each spot with a sandpapery liquid that she said (a) removed the outer layer of skin and (b) removed natural oils fromthe scalp. Then she stuck a pile of glue and conductive paste on each spot, applied the electrode, and dried it using a super super cold air blower. I then had a 20 minute EEG to get a base reading, which involves laying still, hyperventilating, and a strobe light. Afterwards, a neurologist gave me a physical. She really enjoyed using the reflex thingum on my left knee, which was not as anxious to reflex as my right!
On to the epilepsy ward I went, where they wanted to put an IV in my forearm. That sounded painful to me so we went with my hand. We had to choose a hand. I was trying to figure out whether my left or right hand was less critical for gaming, but the tech said, "Which hand do you wipe with?" *quiet pause* She won. I'll be honest - the IV frickin hurt. It felt like the vein in my hand was going to burst!! A little bit later I had to give away four vials of blood. Floyd walked away for a little bit whilst I was pumping up the vials. I can't blame him. I would have walked away too if I could.
Speaking of walking away, I am tethered to my bed. I have a box hanging around my neck into which the EEG lines feed, and that box is connected to an industrial strength black cable which connects to the recording/transmitting equipment. The tether was stuck around my little table on wheels but Floyd was kind enough to unravel it so that I could go pee. A note with regard to peeing here, I have another blog in the works for that topic alone!!
Floyd left before dark at my insistence to make his drive home easier, as the poor lad has to work this week. I almost fell asleep but fought it, because I didn't want to miss dinner, which consisted of chicken (too thick for me to eat - I like my meat thin), a roll, iced tea, and a smattering of corn and what I *think* was kale. The best part was the fresh sliced strawberry at the bottom of my yogurty-granola dessert. As you might guess, I am soooooo hungry right now. Soooooooo hungry!! I am ravenously looking forward to my cheerio breakfast!!!
A few other notes. I am visited by a nurse about once every two hours. I was given a gigantic 32 ounce sippy cup of water which has a locked lid. Thr sides of my bed stay up and are covered with padding. The room is a bit warm. I have a sock with a thumb hole cut in it over my hand to keep the IV from accidentally tearing out. And, I have three wristbands. One with my name. One classifying me as a fall risk (BRIGHT YELLOW) and one noting that I have medication allergies (FIREHOUSE RED). Sigh. We'll
see how things go tomorrow after the doctors review my first night's data!
So here I am.
The trip here was beautiful. Floyd drove me up here in my Taurus and mapquest's fastest route involved driving past quaint towns, on scenic byways, and past stunning landscapes like rocky crags near Old Ragtop Mountain. It was glorious! Parking at the hospital was a rather abyssmal end to the otherwise lovely drive. There was one garage that was packed, but the lady in front of us was driving crazy. She pulled into a ridiculously narrow spot between two long trucks and came a sliver away from ramming one truck's bumper. Oh so close. We drove up for what felt like a dozen levels before we scored an uber spot on the same aisle as the stairwell. But really, parking here was traumatic!! Even Floyd commented that it would have been soooo much better to have Mom driving with her handicap parking tag. Yes, I'll admit it, I would have mooched her phat parking priviledges.
Once I got here, I was funneled to the EEG lab on the basement of the primary care center, where they hooked up a bunch of electrodes to my scalp. The process involves measuring my skull, marking a bunch of Xs in red all over my head. The technician had to deal with my very long hair, and told me that the EEG tehnicians all fight over the bald men! After marking me up, she scrubbed each spot with a sandpapery liquid that she said (a) removed the outer layer of skin and (b) removed natural oils fromthe scalp. Then she stuck a pile of glue and conductive paste on each spot, applied the electrode, and dried it using a super super cold air blower. I then had a 20 minute EEG to get a base reading, which involves laying still, hyperventilating, and a strobe light. Afterwards, a neurologist gave me a physical. She really enjoyed using the reflex thingum on my left knee, which was not as anxious to reflex as my right!
On to the epilepsy ward I went, where they wanted to put an IV in my forearm. That sounded painful to me so we went with my hand. We had to choose a hand. I was trying to figure out whether my left or right hand was less critical for gaming, but the tech said, "Which hand do you wipe with?" *quiet pause* She won. I'll be honest - the IV frickin hurt. It felt like the vein in my hand was going to burst!! A little bit later I had to give away four vials of blood. Floyd walked away for a little bit whilst I was pumping up the vials. I can't blame him. I would have walked away too if I could.
Speaking of walking away, I am tethered to my bed. I have a box hanging around my neck into which the EEG lines feed, and that box is connected to an industrial strength black cable which connects to the recording/transmitting equipment. The tether was stuck around my little table on wheels but Floyd was kind enough to unravel it so that I could go pee. A note with regard to peeing here, I have another blog in the works for that topic alone!!
Floyd left before dark at my insistence to make his drive home easier, as the poor lad has to work this week. I almost fell asleep but fought it, because I didn't want to miss dinner, which consisted of chicken (too thick for me to eat - I like my meat thin), a roll, iced tea, and a smattering of corn and what I *think* was kale. The best part was the fresh sliced strawberry at the bottom of my yogurty-granola dessert. As you might guess, I am soooooo hungry right now. Soooooooo hungry!! I am ravenously looking forward to my cheerio breakfast!!!
A few other notes. I am visited by a nurse about once every two hours. I was given a gigantic 32 ounce sippy cup of water which has a locked lid. Thr sides of my bed stay up and are covered with padding. The room is a bit warm. I have a sock with a thumb hole cut in it over my hand to keep the IV from accidentally tearing out. And, I have three wristbands. One with my name. One classifying me as a fall risk (BRIGHT YELLOW) and one noting that I have medication allergies (FIREHOUSE RED). Sigh. We'll
see how things go tomorrow after the doctors review my first night's data!
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