these past few weeks have been sooooo long. there isn't a word or series of words that can adequately describe how long this week has been. I feel it in my shortness of breath and the tightness in my chest. I know I need to eat, I'm trying to think of what I can eat that I'm less likely to throw-up. But by the feeling in my chest I have a suspicion that I'll throw up no matter what I eat in which case I should choose the food less likely to be unpleasant on the way back up.
If I didn't mention Ive been throwing up a lot lately. so much in fact that i forgot i had thrown up a couple of times yesterday until something random triggered the memory. when vomiting is no longer an event in your life worth remembering you know you're doing it too much.
I'm so tired i cant see straight and probably couldn't write by hand but can type because i don't have to look at the keys or the keyboard.
My eye has been twitching since about 6pm. I don't know why but nothing makes it stop.
I feel a great weight on my forehead that keeps me awake and aware. It listens to the sensations in my stomach and esophagus. It tells me I will not sleep until I have consumed something and while I ask for assurances that whatever i choose to eat will stay down I cant get an agreement. It's a wild card. 50/50 of a nice snack and blissful oblivion or a nice snack, vomiting, more stomach acid, and having to take more meds to get to sleep because my body is too keyed up after the heaving. This is why all of the trash cans in my house are lined with reused plastic shopping bags. because I may need one as a vessel to vomit in and I want easy clean-up. Another indication that vomiting is an integral part of my life at this point. It comes and it goes, its always awful. sometimes i can throw up mid stride and keep walking and other times I'm heaving over the toilet. It could be multiple time a night or not at all. vomit roulette. Its a shame it won't make me skinny. I'm not sure if I'm being sardonic or self-loathing with that comment. It comes from some mean little part of me.
I'm so tired, so tired. My skin is crawling with lack of sleep. If I could just get sleep before I'm dragged out of bed. If I can wake up and be alert, having be unconsious for a cwertain amount of time, I can deal with the tired. I'm used to tired. But getting dragged out and performing tasks by muscle memory is s bone deep tired. I'm weary. There is so much that I need to do and people I would like to see. The projects keep piling up as I stumble through weary wakefulness. every day is so long but I can't seem to get everything done. *sigh*
Showing posts with label chrohn's. Show all posts
Showing posts with label chrohn's. Show all posts
Thursday, March 26, 2015
Tuesday, March 17, 2015
the longest day
The inside of my stomach hurts too much to eat. It is aching and empty, its muscles ache. I'm afraid anything I eat is gonna come right back up. Looks like soda again, at least it will make my stomach feel better and get some calories in me to make up for the day without food.
Today started being dragged from slumber roughly into a zombie state of awake. I could barely stay awake and was burning with fibro but according to my roommate I had to drive us to pick up the rental and drop off the car to be repaired. I got dressed and stumbled to the car. I GPS'd the shop and headed out with my roommate in tow. Her in the back seat making me her driver, our usual arrangement. I would never in a million years trust her to drive my car safely.
we get half way to our destination
"I don't have my wallet!" she exclaims
"What the..! Are you kidding me?!"
"I had it in my hand, I remember, I must have put it down instead of putting it in my purse." she says thinking.
I'm silently seething. I turn us around and back to the house.
"I always check my purse before I leave the house." she says.
"obviously not." I grumble.
"But I do." She protests
"Well you didn't this time!" I said through clenched teeth.
I drove the half hour home in increasing traffic. I'm not feeling more awake just more itchy.
I park in front of a driveway and she scampers off. She returns quickly, panting.
"It was on the cat tree, Morti had it." she exclaimed throwing herself into the car. I take off as soon as the door closes after her foot.
We make it most of the way to the car repair place yet again. My roommate asks me the date. I tell her again that its the 16th.
"And the repair appt is when?" she asks
"The 23rd." I answer without thought.
"uh oh." she says
"What."
"Today isn't the 23rd." she says
"No its not.
"So the car appt isn't until next week." she says.
I want to slam on the breaks and stop hard on the entrance to the tunnel but I control myself and my inner anger seething towards the top is only betrayed by a pause, deep breath, and a sigh.
"When did you rent the car for?" I ask deadpan
"When the repair appt is."
"So not today then." I say, partially relieved because at least she hasn't screwed us on the rental. I rub my face with my hand and think. I can't operate the GPS one handed and I'm about to be underground anyway so I need to just try to get off of the highway anywhere I can.
I take the first exit and pull off to program home into the GPS. We end up driving in circles in this crummy little industrial town that depresses me. My patience becomes thinner and my ability to stay awake is dwindling. What I want most is to scream, have a good cry and a good long sleep. I will not have any of the preceding.
Finding a Honda dealership to change the battery in my damned clicker is the only saving grace of the 3 hours of pointless driving.
I pass out dressed on my bed within 10 min of arriving home. I am unconscious until 9pm. i get up and go into my roommates room and ask her if she has gotten the food I need.
"Oh I forgot." she says unconcerned
I look at her dumbfounded "You know that's pretty much the only thing I can eat right now." I say seriously.
"When does the store close?" she asks looking up at me from her bed where she cuddles her cat while playing mindless facebook games.
"10." I answer
"Well its already 20 till." she shrugs
I hit the wall with my back, feeling a loss of vertical control. My jaw drops open as my mind races. I know that if I say anything I won't be able to control how angry I'll get and I'll be further from my goal of getting food.
I just leave her room slamming the door behind me and sit at my computer until I find the closest latest open stores I can reach in time. I get dressed and leave slamming the door behind me. She doesn't pursue me or call me to see if I'm ok. My leaving makes no impression on her. She is supposed to be my caregiver, the one who makes sure I eat. She had one thing to do after the murderous day I had and she had failed.
Lightheaded from eating nothing in too many hours and seething with anger I found the things I needed and came back home, carrying what I could back up the 4 flights of stairs. My arm with the plate in it is aching, it always does if I carry any weight. My legs are burning from exertion and the muscle and leg wrapping sensation of fibro pain. Every joint aches. It hurts to hold myself upright. Typing is kinda hurting actually. I'll stop when I get my vikings.
My phone has been making strange noises for the last couple of hours, ones I don't understand. I hate when the damned thing starts talking in new noises that I will have to come to understand as its audio language. Systematically being trained by my machines.
My days are blurring into aching stomach and stomach muscles, throwing up, sniffling, aching, medicating, dealing with side effects and interactions. Coughing, so much coughing. I dread coughing. Somewhere during the month where I couldn't keep anything down day after day, didn't sleep, never had relief, so much recycled soda running through my nose, I lost my ability to really control when I throw up. If I cough too hard, no matter why I'm coughing I will throw up. Sometimes a little, sometimes a lot, almost always violently and through the nose as well as the mouth. [Like I said, graphic, no gross but none the less natural bodily functions are spared]
There is a very strange tinnitus happening to me lately at home, I don't know if its wishful thinking, outright audio hallucination, a misinterpretation of the sounds that are present or what the logical answer is but when I sit alone, the only one awake in the house with nothing but the sound of my fingers across the keys, I swear I hear crickets. I understand why the Chinese revere them so much and contemplate again getting one as a pet. Not the ones they feed to fish and lizards but the big black ones. They come with drums. Their sound is loud and soothing. I wonder if they'll make me get a brain scan again some time and what reason they would use. So many things to look at and study. A case that people have followed. I was a local celebrity for the severity of my case and for the art that I covered my hospital room in. I had nothing but stolen magazines, scissors, tape, Styrofoam and glue sticks. I taped hospital menus together to get a bigger canvas. I made scores of collages that I actually like a lot during that time. Art was all I had. I was always on some sort of IV that tainted my smells and taste buds. blood loss was daily, hourly, every fifteen min. The pain was indescribable. And I was so alone. I had the staff at the hospital, all of the nurses knew me by name and would visit and talk about my art. I had a huge Dr.s staff that came through in twos and threes randomly. But mostly I had my view and my computer. I was as suicidal as I have ever been. My boyfriend was a no text, no email, no chat, no show in every way. I wanted to die and I didn't hesitate to let the world know because I know that when you feel that way you're supposed to let people know. I did.
I was openly scolded on facebook by many of my friends for "calling them out" when I CALLED OUT FOR HELP. I was smacked for reaching out in desperation. Noted. No one gives a shit.
none of my friends visit. a few acquaintances come for a short time during my long stay, this time. The other times here I have been completely alone.
new beds, new lighting, new arrangement, new location, new floor, new wing, new staff because Ive been there more than 7 days. New curtains, new bathroom locations, new plug and side table locations. New sample bag with soap and toothpaste and a few other toiletries. a new height or location of the Tv closest to me. A change in the hearing of my roommate, either so acute I have to wear earplugs or so deaf that all she does is yell, on the phone, all day long! There are snorers and gurglers I use my ear plugs often but mostly I meditate because I can't sleep. Per the usual.
Digressing as all of these stories will I bid you goodnight, I can't type any longer.
Today started being dragged from slumber roughly into a zombie state of awake. I could barely stay awake and was burning with fibro but according to my roommate I had to drive us to pick up the rental and drop off the car to be repaired. I got dressed and stumbled to the car. I GPS'd the shop and headed out with my roommate in tow. Her in the back seat making me her driver, our usual arrangement. I would never in a million years trust her to drive my car safely.
we get half way to our destination
"I don't have my wallet!" she exclaims
"What the..! Are you kidding me?!"
"I had it in my hand, I remember, I must have put it down instead of putting it in my purse." she says thinking.
I'm silently seething. I turn us around and back to the house.
"I always check my purse before I leave the house." she says.
"obviously not." I grumble.
"But I do." She protests
"Well you didn't this time!" I said through clenched teeth.
I drove the half hour home in increasing traffic. I'm not feeling more awake just more itchy.
I park in front of a driveway and she scampers off. She returns quickly, panting.
"It was on the cat tree, Morti had it." she exclaimed throwing herself into the car. I take off as soon as the door closes after her foot.
We make it most of the way to the car repair place yet again. My roommate asks me the date. I tell her again that its the 16th.
"And the repair appt is when?" she asks
"The 23rd." I answer without thought.
"uh oh." she says
"What."
"Today isn't the 23rd." she says
"No its not.
"So the car appt isn't until next week." she says.
I want to slam on the breaks and stop hard on the entrance to the tunnel but I control myself and my inner anger seething towards the top is only betrayed by a pause, deep breath, and a sigh.
"When did you rent the car for?" I ask deadpan
"When the repair appt is."
"So not today then." I say, partially relieved because at least she hasn't screwed us on the rental. I rub my face with my hand and think. I can't operate the GPS one handed and I'm about to be underground anyway so I need to just try to get off of the highway anywhere I can.
I take the first exit and pull off to program home into the GPS. We end up driving in circles in this crummy little industrial town that depresses me. My patience becomes thinner and my ability to stay awake is dwindling. What I want most is to scream, have a good cry and a good long sleep. I will not have any of the preceding.
Finding a Honda dealership to change the battery in my damned clicker is the only saving grace of the 3 hours of pointless driving.
I pass out dressed on my bed within 10 min of arriving home. I am unconscious until 9pm. i get up and go into my roommates room and ask her if she has gotten the food I need.
"Oh I forgot." she says unconcerned
I look at her dumbfounded "You know that's pretty much the only thing I can eat right now." I say seriously.
"When does the store close?" she asks looking up at me from her bed where she cuddles her cat while playing mindless facebook games.
"10." I answer
"Well its already 20 till." she shrugs
I hit the wall with my back, feeling a loss of vertical control. My jaw drops open as my mind races. I know that if I say anything I won't be able to control how angry I'll get and I'll be further from my goal of getting food.
I just leave her room slamming the door behind me and sit at my computer until I find the closest latest open stores I can reach in time. I get dressed and leave slamming the door behind me. She doesn't pursue me or call me to see if I'm ok. My leaving makes no impression on her. She is supposed to be my caregiver, the one who makes sure I eat. She had one thing to do after the murderous day I had and she had failed.
Lightheaded from eating nothing in too many hours and seething with anger I found the things I needed and came back home, carrying what I could back up the 4 flights of stairs. My arm with the plate in it is aching, it always does if I carry any weight. My legs are burning from exertion and the muscle and leg wrapping sensation of fibro pain. Every joint aches. It hurts to hold myself upright. Typing is kinda hurting actually. I'll stop when I get my vikings.
My phone has been making strange noises for the last couple of hours, ones I don't understand. I hate when the damned thing starts talking in new noises that I will have to come to understand as its audio language. Systematically being trained by my machines.
My days are blurring into aching stomach and stomach muscles, throwing up, sniffling, aching, medicating, dealing with side effects and interactions. Coughing, so much coughing. I dread coughing. Somewhere during the month where I couldn't keep anything down day after day, didn't sleep, never had relief, so much recycled soda running through my nose, I lost my ability to really control when I throw up. If I cough too hard, no matter why I'm coughing I will throw up. Sometimes a little, sometimes a lot, almost always violently and through the nose as well as the mouth. [Like I said, graphic, no gross but none the less natural bodily functions are spared]
There is a very strange tinnitus happening to me lately at home, I don't know if its wishful thinking, outright audio hallucination, a misinterpretation of the sounds that are present or what the logical answer is but when I sit alone, the only one awake in the house with nothing but the sound of my fingers across the keys, I swear I hear crickets. I understand why the Chinese revere them so much and contemplate again getting one as a pet. Not the ones they feed to fish and lizards but the big black ones. They come with drums. Their sound is loud and soothing. I wonder if they'll make me get a brain scan again some time and what reason they would use. So many things to look at and study. A case that people have followed. I was a local celebrity for the severity of my case and for the art that I covered my hospital room in. I had nothing but stolen magazines, scissors, tape, Styrofoam and glue sticks. I taped hospital menus together to get a bigger canvas. I made scores of collages that I actually like a lot during that time. Art was all I had. I was always on some sort of IV that tainted my smells and taste buds. blood loss was daily, hourly, every fifteen min. The pain was indescribable. And I was so alone. I had the staff at the hospital, all of the nurses knew me by name and would visit and talk about my art. I had a huge Dr.s staff that came through in twos and threes randomly. But mostly I had my view and my computer. I was as suicidal as I have ever been. My boyfriend was a no text, no email, no chat, no show in every way. I wanted to die and I didn't hesitate to let the world know because I know that when you feel that way you're supposed to let people know. I did.
I was openly scolded on facebook by many of my friends for "calling them out" when I CALLED OUT FOR HELP. I was smacked for reaching out in desperation. Noted. No one gives a shit.
none of my friends visit. a few acquaintances come for a short time during my long stay, this time. The other times here I have been completely alone.
new beds, new lighting, new arrangement, new location, new floor, new wing, new staff because Ive been there more than 7 days. New curtains, new bathroom locations, new plug and side table locations. New sample bag with soap and toothpaste and a few other toiletries. a new height or location of the Tv closest to me. A change in the hearing of my roommate, either so acute I have to wear earplugs or so deaf that all she does is yell, on the phone, all day long! There are snorers and gurglers I use my ear plugs often but mostly I meditate because I can't sleep. Per the usual.
Digressing as all of these stories will I bid you goodnight, I can't type any longer.
Sunday, March 15, 2015
a common night of side effects and drug interactions
There are so many things I never say outside my head. I have a running monologue, it probably comes from being an only child. I narrate my life as though there were an audience or I'm writing a book. I'll probably never get around to writing a book. The editor in me cringes at the thought. But there's something about the modern blog that allows a person to just talk. We don't talk to each other in person, but we can at least strain at a type of connection between reader and writer.
I would never share what it is to be ill, really. Not the synapse I tell people, not the overview of current physical feelings but a beat by beat of sorts. Actually exposing what it means to try and function, have some sort of life despite what my body is doing and whats happening because of the pills I'm prescribed.
I've been pretty pukey the last couple of days. I was visiting a relative and smoking in my car late at night, an experience that was surprisingly meditative. I would take a couple hits and then lean out the door and puke. Sometimes it was only a mouth full that rolled out of a pocked at the back of throat that seemed to store a mouth full of digested foods at all times. Then I would close the door and smoke some more, thinking, meditating, warming myself from the inside with silly thoughts. smoke, mediate, puke, meditate, puke, smoke. All in a random sequence. I don't even think about it when I puke anymore. I lean over, relieve my esophagus of its spasming and sit back down, rinse out my throat and continue on as if nothing happened. I'm not sick. The doctors think its a combination of the pills I take, but its a small price to pay for this level of functionality.
The car was a perfect place to just lean over and puke. It was the perfect angle so that none of it shot out my nose, unlike tonight and most nights. I wish I could get rid of the smell and the burning in my nostrils. my forehead is throbbing, I keep rolling my eyes subconsciously because I'm "so over it".
Pretty much any time I consume something, be it food, candy or what have you, it hurts my stomach of burns through my throat. I choose to survive by eating the things that hurt me the least. The healthier it is and the better it is for me the less likely I'll be able to eat it. I have been jonesing for a salad for about 3 years.
I've worked out what my last meal with be based on the things that I love to eat and no longer can because blood and the hospital are a common side effect of consumption along with some crippling pain. I suppose this is where I let you know that there are no longer any pain killers that work on me, nothing works to put me to sleep. the last time I had an upper endoscopy the drug they gave me never worked. I was awake and choking to breathe through the entire thing. They scorched my esophagus during the process. They also waited far too long for the drug to take effect without adjusting for my obvious tolerance as i talked to them the entire time. I was a tiny bit tired at one point but they I was completely aware and feeling no numbing effects, they proceeded with the procedure.
I don't think theres a single part of my body that hasn't been filmed multiple times from the inside, tiny cameras snaking through what seems miles of pink or grey or bloody.
I'm so tired, always so tired. I sleep but I never rest. I can't write anymore tonight, my head is pounding.
I would never share what it is to be ill, really. Not the synapse I tell people, not the overview of current physical feelings but a beat by beat of sorts. Actually exposing what it means to try and function, have some sort of life despite what my body is doing and whats happening because of the pills I'm prescribed.
I've been pretty pukey the last couple of days. I was visiting a relative and smoking in my car late at night, an experience that was surprisingly meditative. I would take a couple hits and then lean out the door and puke. Sometimes it was only a mouth full that rolled out of a pocked at the back of throat that seemed to store a mouth full of digested foods at all times. Then I would close the door and smoke some more, thinking, meditating, warming myself from the inside with silly thoughts. smoke, mediate, puke, meditate, puke, smoke. All in a random sequence. I don't even think about it when I puke anymore. I lean over, relieve my esophagus of its spasming and sit back down, rinse out my throat and continue on as if nothing happened. I'm not sick. The doctors think its a combination of the pills I take, but its a small price to pay for this level of functionality.
The car was a perfect place to just lean over and puke. It was the perfect angle so that none of it shot out my nose, unlike tonight and most nights. I wish I could get rid of the smell and the burning in my nostrils. my forehead is throbbing, I keep rolling my eyes subconsciously because I'm "so over it".
Pretty much any time I consume something, be it food, candy or what have you, it hurts my stomach of burns through my throat. I choose to survive by eating the things that hurt me the least. The healthier it is and the better it is for me the less likely I'll be able to eat it. I have been jonesing for a salad for about 3 years.
I've worked out what my last meal with be based on the things that I love to eat and no longer can because blood and the hospital are a common side effect of consumption along with some crippling pain. I suppose this is where I let you know that there are no longer any pain killers that work on me, nothing works to put me to sleep. the last time I had an upper endoscopy the drug they gave me never worked. I was awake and choking to breathe through the entire thing. They scorched my esophagus during the process. They also waited far too long for the drug to take effect without adjusting for my obvious tolerance as i talked to them the entire time. I was a tiny bit tired at one point but they I was completely aware and feeling no numbing effects, they proceeded with the procedure.
I don't think theres a single part of my body that hasn't been filmed multiple times from the inside, tiny cameras snaking through what seems miles of pink or grey or bloody.
I'm so tired, always so tired. I sleep but I never rest. I can't write anymore tonight, my head is pounding.
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