thought it would be best to stop, i tend to get really into what i'm writing and instead of feeling better i feel worse. now i'm gonna make myself write everyday.
lost my job this summer. they said i didn't know enough about the metals industry and that i wasn't picking up the job fast enough. i had minimal training and only constant assurances i was doing fine. it was out of left field, on a friday, with no warning and no time for me to make plans accordingly. i would have been happy to go back to scale operating, but they didn't want that. then they lost 2 or 3 operators within 2 months. everyone seems surprised when its hard to find someone to work for 60 hours a week, away from civilization, and have no time for anything else. i did it, i did it well. doesn't matter, if you don't fit in, it doesn't matter.
i know how i am, i get it. its not that i don't know. i just also know i work my tail off and am loyal. i would love for that to be relevant.
there's all this situations in my life where that doesn't matter. i am loyal, encouraging, hard working. i will bust my ass and be the only person on your side when everyone else has abandoned you. i am your 2am phone call. i will help you move, cook you dinner, take care of you when you're sick. i pay attention to your stories, remember the little things and surprise you when you need it. we don't have to like the same things, i encourage you to see your friends and pursue your interests. i don't have to tag along to everything, i won't make it all about me. you get your life and you get someone at home who wants to be there for you.
but since i can't fuck anytime and all the time, those things don't matter. since there are days where i have trouble forming a thought, expressing an idea, getting out of bed, doing chores, those things don't count anymore. they do, i know they do. but i am sick of feeling guilty over the things i can't do and not being appreciated for the things i can't.
Sunday, September 23, 2012
Tuesday, June 5, 2012
This Week
went by Dr Jessica's today, cause I'm all about trying whatever necessary to fix all this. to go ahead and make life easier to live. they did some tests, including blood pressure, which turned out funny. why people don't believe me when i tell them, "that's my bad arm, use the other one" is beyond me. i could have saved you the solid 10 minutes spent trying to get an accurate reading. side note, anyone taking my blood should heed this too. i'm not kidding when i tell you its next to impossible to find and keep a vessel.
going back next week to see what means what. i also picked up my brain MRI so i can take that to...my neurosurgery appointment!! yeah, i go on Thursday. updates then, as to what they say. i find myself in this weird place of wanting him to say surgery and wanting him to say no. i think i'd rather him say yes, cause then the decision is on me. if he says no, i think i just really don't want to hear another dr say they can't help me or that i just need to suck it up.
Tim and I were looking up like, Chiari merchandise, like awareness merch. most of it, as per usual, was super lame, but some was super cute. it doesn't hurt that their awareness color is PURPLE!!! there was super cute one that said Real Men Wear Purple, loved it. lots of ribbons, and the like, i'm totally getting some. cause clothes make it better, not kidding, makes me happy.
i think i'm really waiting until the apt on Thursday to say anything even remotely publicly. calling family, posting this blog address, letting friends know. i mean, i'm really concerned with coming off as LOOK AT ME, blah blah.
i don't know that i will publish this. i want to be able to feel free to write things on there that are more incriminating, IE, how Brandon reacts to any of this.
going back next week to see what means what. i also picked up my brain MRI so i can take that to...my neurosurgery appointment!! yeah, i go on Thursday. updates then, as to what they say. i find myself in this weird place of wanting him to say surgery and wanting him to say no. i think i'd rather him say yes, cause then the decision is on me. if he says no, i think i just really don't want to hear another dr say they can't help me or that i just need to suck it up.
Tim and I were looking up like, Chiari merchandise, like awareness merch. most of it, as per usual, was super lame, but some was super cute. it doesn't hurt that their awareness color is PURPLE!!! there was super cute one that said Real Men Wear Purple, loved it. lots of ribbons, and the like, i'm totally getting some. cause clothes make it better, not kidding, makes me happy.
i think i'm really waiting until the apt on Thursday to say anything even remotely publicly. calling family, posting this blog address, letting friends know. i mean, i'm really concerned with coming off as LOOK AT ME, blah blah.
i don't know that i will publish this. i want to be able to feel free to write things on there that are more incriminating, IE, how Brandon reacts to any of this.
Sunday, June 3, 2012
Bleh
Yesterday was pretty discouraging. I just woke up feeling poorly. No energy, slow reactions, bugh. By the time work was over my right side was just not having it. My face even felt like it was getting in on the game, feeling weird and tingly.
With doctors leaning toward MS, i'm trying to wrap my head around "what does that mean for me?" The "for me" part is what matters. Every case is different and every person is different. This is something that progresses, and i'm scared. Where am I on the scale? I think about how much it has progressed without a diagnosis, where am i now? where will i be in 5 years, 10 years? what does that mean for work, marriage, family?
I carried 20 pounds yesterday. my arms hurt so much and are so weak today its ridiculous. that's disheartening, to not be able to do something that simple.
I see Dr Jessica this week and have an MRI scheduled. I'm hoping that some more natural alternatives will work, my body doesn't react well to Western medicine. With diet and regular chiropractic, maybe I can stave this off. That to me will be harder than brain surgery.
I'm pretty defeated today, all weekend in fact. I know that i'll pick it back up, i'm not gonna beat myself up for having a weak moment. You feel it, own it, then suck it up. If i don't give myself that chance, just push it down and bottle it up, it comes back to bite me in the ass.
With doctors leaning toward MS, i'm trying to wrap my head around "what does that mean for me?" The "for me" part is what matters. Every case is different and every person is different. This is something that progresses, and i'm scared. Where am I on the scale? I think about how much it has progressed without a diagnosis, where am i now? where will i be in 5 years, 10 years? what does that mean for work, marriage, family?
I carried 20 pounds yesterday. my arms hurt so much and are so weak today its ridiculous. that's disheartening, to not be able to do something that simple.
I see Dr Jessica this week and have an MRI scheduled. I'm hoping that some more natural alternatives will work, my body doesn't react well to Western medicine. With diet and regular chiropractic, maybe I can stave this off. That to me will be harder than brain surgery.
I'm pretty defeated today, all weekend in fact. I know that i'll pick it back up, i'm not gonna beat myself up for having a weak moment. You feel it, own it, then suck it up. If i don't give myself that chance, just push it down and bottle it up, it comes back to bite me in the ass.
Wednesday, May 30, 2012
kee-AR-ee
left work early today to see the neurologist it took me 2 months to get in to see. i'm honestly more upset over that part of it than anything.
diagnosis confirmed, i have a chiari malformation.for those who don't know:
Arnold–Chiari malformation, or often simply Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating [1] hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow
thanks Wiki!
the doc was still concerned about MS, saying all signs point to Multiple Sclerosis. any scans keep coming back negative though, so if he wants to keep looking, by all means. i'm about accuracy. cause if you get it right, then you treat me right.
they set me up with a neurosurgeon, to have a sit down. don't know how that will go, just have to see. from what i understand, the measurement has been what they judge by, but now its more about severity of symptoms. the length of the displacement does not directly correlate to how prevalent your symptoms are.
i didn't particularly enjoy today's visit. i find most doctors difficult to speak with and have had enough blow me off in the past decade to really be apprehensive. i mean, you're there and obviously freaked and desperate and it seems like they don't get it.
i mean, i'm not itching for brain surgery to cause i'm into staples and scars. i'm not looking for the sympathy vote or the drama. i just really really really wanna feel better. i won't whine anymore about all the things i want, at least not in this post. just an update.
feel free to look things up, but i encourage you to not let it bother you, some of it could give you the heebs.
diagnosis confirmed, i have a chiari malformation.for those who don't know:
Arnold–Chiari malformation, or often simply Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating [1] hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow
thanks Wiki!
the doc was still concerned about MS, saying all signs point to Multiple Sclerosis. any scans keep coming back negative though, so if he wants to keep looking, by all means. i'm about accuracy. cause if you get it right, then you treat me right.
they set me up with a neurosurgeon, to have a sit down. don't know how that will go, just have to see. from what i understand, the measurement has been what they judge by, but now its more about severity of symptoms. the length of the displacement does not directly correlate to how prevalent your symptoms are.
i didn't particularly enjoy today's visit. i find most doctors difficult to speak with and have had enough blow me off in the past decade to really be apprehensive. i mean, you're there and obviously freaked and desperate and it seems like they don't get it.
i mean, i'm not itching for brain surgery to cause i'm into staples and scars. i'm not looking for the sympathy vote or the drama. i just really really really wanna feel better. i won't whine anymore about all the things i want, at least not in this post. just an update.
feel free to look things up, but i encourage you to not let it bother you, some of it could give you the heebs.
Monday, May 28, 2012
On The Verge
Let's be blunt, shall we?
I've had a nervous breakdown before. It was a few years ago and there's not a lot of people left around who had front row seats for it. I don't really remember the darkest parts, but rest assured the parts I do recall are miserable enough.
I couldn't function. Bathing, eating, sleeping, daily things were next to impossible. I ended up back in tifton for 6 months and then in a rehab. The latter was the best choice ever. Maybe i'll write that out later.
It was a scary time. I was too scared to sleep, to scared to stay awake. Regular panic attacks and crying fits and episodes of just pure terror. I worked very hard to get my life back and I never want to go back again.
Stress has always been a killer for me. I don't remember a time in my life when it wasn't present and often crippling. Even as a little kid. Paranoia and general anxiety all through school, panic attacks, nightmares, bouts of delusion. I never let it stop me though. I was always still trying, pushing, wanting more. Looking back, i was trying so hard that I think the problem was never really identified and handled as it should have been. It could appear as something not so serious, i was so good and covering. I'm not that good anymore.
4 months ago, I asked work for a change in hours. told them my body simply could not handle it anymore. yes, i had signed up for it. i was also told to tell them when it was too much. i did. last week's check was for 65 hours. i remember when 40 hours seemed insane. now add that to the daily stress of my chronic pain. add marital problems. i shouldn't be surprised that its coming back.
but i kind of am. i've never taken it to heart that this is real. i keep expecting it to go away. or that its just something i can "push through" as often as i've been told to. i'm starting to accept that its not that simple.
i can't work this much. hands down. HATE saying that. hate. but i can't. i don't want to end up in an institution. let's all be real and admit that is a suitable place for me. i've gotta have less hours or a different job. one that i can schedule doctors visits without it being a big deal. regularly go to physical therapy. see my family. 6 days a week not only stresses you out, but allows no time for the things in your life that DEstress you.
things that need to happen:
*i have to work less
*i need to start exercise again
*my diet has to go back natural
*physical therapy
*i should set aside costume time. being creative is my balm.
*friend time. regular and frequent.
*see the family.
TIME is the key to a lot of this. LESS with the things that damage my nervous system and MORE with the things that heal it.
some decisions to be made this week. fingers crossed and prayers at the ready.
I've had a nervous breakdown before. It was a few years ago and there's not a lot of people left around who had front row seats for it. I don't really remember the darkest parts, but rest assured the parts I do recall are miserable enough.
I couldn't function. Bathing, eating, sleeping, daily things were next to impossible. I ended up back in tifton for 6 months and then in a rehab. The latter was the best choice ever. Maybe i'll write that out later.
It was a scary time. I was too scared to sleep, to scared to stay awake. Regular panic attacks and crying fits and episodes of just pure terror. I worked very hard to get my life back and I never want to go back again.
Stress has always been a killer for me. I don't remember a time in my life when it wasn't present and often crippling. Even as a little kid. Paranoia and general anxiety all through school, panic attacks, nightmares, bouts of delusion. I never let it stop me though. I was always still trying, pushing, wanting more. Looking back, i was trying so hard that I think the problem was never really identified and handled as it should have been. It could appear as something not so serious, i was so good and covering. I'm not that good anymore.
4 months ago, I asked work for a change in hours. told them my body simply could not handle it anymore. yes, i had signed up for it. i was also told to tell them when it was too much. i did. last week's check was for 65 hours. i remember when 40 hours seemed insane. now add that to the daily stress of my chronic pain. add marital problems. i shouldn't be surprised that its coming back.
but i kind of am. i've never taken it to heart that this is real. i keep expecting it to go away. or that its just something i can "push through" as often as i've been told to. i'm starting to accept that its not that simple.
i can't work this much. hands down. HATE saying that. hate. but i can't. i don't want to end up in an institution. let's all be real and admit that is a suitable place for me. i've gotta have less hours or a different job. one that i can schedule doctors visits without it being a big deal. regularly go to physical therapy. see my family. 6 days a week not only stresses you out, but allows no time for the things in your life that DEstress you.
things that need to happen:
*i have to work less
*i need to start exercise again
*my diet has to go back natural
*physical therapy
*i should set aside costume time. being creative is my balm.
*friend time. regular and frequent.
*see the family.
TIME is the key to a lot of this. LESS with the things that damage my nervous system and MORE with the things that heal it.
some decisions to be made this week. fingers crossed and prayers at the ready.
How Am I Not A Drug Addict?
i wonder sometimes. and i totally see why others can be and there's no judgement on my end.
Things That Require Sitting For A Long Time
going to the movies
driving to work, to GA, driving ANYWHERE
sitting at a desk
using the desktop computer
eating at a restaurant
any spectator event
getting a haircut
waiting rooms
so i stand a lot, when i can. change positions. straight up laid down on the floor at the Rave one day and dared anyone to say something.
Things That Require Standing For A Long Time
working
shopping
going to an amusement park
standing in line
concerts
cleaning
i'm guessing a lot of people take these for granted. and i don't anymore.
*after intercourse, i can barely use my right leg, and it stays that way for at least 3 days.
*it hurts the entire time. i do not like it. i like that he likes it, thats about it. to even become aroused is painful.
*i will go days without #2. days. sometimes a week. diet, pills, supplements, whatever. its a constant chore and requires planning on my part.
*i don't want to hang out a lot. for me to be physically comfortable is tough. And i will need to be able to adjust and i only feel able to do that around some people. i can't just lay in anyone's living room floor.
*i'm exhausted by the end of the day. i might not want to come out with you. maybe i do, and if when i get there i'm not a cheerleader, forgive me. i want to be out, just might not have the energy to be part of it.
Things That Require Sitting For A Long Time
going to the movies
driving to work, to GA, driving ANYWHERE
sitting at a desk
using the desktop computer
eating at a restaurant
any spectator event
getting a haircut
waiting rooms
so i stand a lot, when i can. change positions. straight up laid down on the floor at the Rave one day and dared anyone to say something.
Things That Require Standing For A Long Time
working
shopping
going to an amusement park
standing in line
concerts
cleaning
i'm guessing a lot of people take these for granted. and i don't anymore.
*after intercourse, i can barely use my right leg, and it stays that way for at least 3 days.
*it hurts the entire time. i do not like it. i like that he likes it, thats about it. to even become aroused is painful.
*i will go days without #2. days. sometimes a week. diet, pills, supplements, whatever. its a constant chore and requires planning on my part.
*i don't want to hang out a lot. for me to be physically comfortable is tough. And i will need to be able to adjust and i only feel able to do that around some people. i can't just lay in anyone's living room floor.
*i'm exhausted by the end of the day. i might not want to come out with you. maybe i do, and if when i get there i'm not a cheerleader, forgive me. i want to be out, just might not have the energy to be part of it.
Saturday, May 26, 2012
A Brutal Reminder
yesterday was not a good health doay, mental or otherwise.
totally seized at work. i've been feeling poorly all week, stress only making my physical symptoms worse. by the afternoon i was short and bitchy and then the bottom fell out. my stomach went to ice, my skin went to fire and i broke out in a sweat. its happened enough now that i knew what was coming. carl got me to the conference room. i was down on the couch screaming and pulling my hair and shaking and writhing, the whole bit, yelling for people not to call an ambulance.
i really don't like to write about it, it feels too scary and i don't know how to remove myself from it enough for the writing about it to not set me off. but i'll do my best.
it feels like my muscles are ripping off my bones, everything curls in on itself. then jumps back out. everything goes blurry and you can't breathe and you start to throw up and shit yourself at once and all you want is to not lose your food in your clothes, not in front of your workers. you pull at your hair and skin, cause for some reason you think that will help in that haze and delirium.
i don;t wanna write about after or what people saw or said. its embarrassing and a number of emotions i am uncomfortable with. i have some scratches on my face and arms but that's the worst of the visible signs left. it could have been worse, it has been worse before.
something Mark said yesterday has stuck with me though. "how do you daily manage this?" and i had to say "like this. i just try." cause i can't take medicine. the ones that have helped have rendered me unable to work or have a life. i'm a drone, a zombie, stupid. and i want a life. i want a life so much. i want what other people have. i'm not lazy, i want to work. i like being the girl that works 60 hours a week. that runs everything, is on top of things, does things. hits the gym like a beast, house clean and clothes done and food ready. hair and makeup right. and i just can't right now.
there are days where even getting up is hard. no, i don't wanna iron my clothes and blowdry my hair and put on makeup. you don't get it, i can barely lift my arms. grocery shopping when you're dragging a leg. going to work when you're almost sure someone is jamming a rod up your vagina? and i try to be positive, i really do. but its been 10 years and i don't know how to anymore at least not today, and certainly not yesterday.
and i'm reminded of things i've not that about in a while. one night at Montevallo, trying to to climb the stairs in Reynolds and i physically couldn't. i wasn't numb, i just couldn't do it. i ended up on my hands and knees pulling myself up both flights, crying. but i had to get up there, we had a show. and my doctor said to get more sleep.
i get now why i cosplay. cause can i just be someone else for a little while? someone who doesn't have all this? its escapism at its finest. its not a conscious choice, but it made sense today. i mean, everyone likes to get away sometimes. and i'm not living in a fantasy world, refusing to face reality. everyone has their thing that helps them just forget it all for a while, lay their troubles down. i just cover mine with a waist coat and skirt.
sometimes you need armor.
totally seized at work. i've been feeling poorly all week, stress only making my physical symptoms worse. by the afternoon i was short and bitchy and then the bottom fell out. my stomach went to ice, my skin went to fire and i broke out in a sweat. its happened enough now that i knew what was coming. carl got me to the conference room. i was down on the couch screaming and pulling my hair and shaking and writhing, the whole bit, yelling for people not to call an ambulance.
i really don't like to write about it, it feels too scary and i don't know how to remove myself from it enough for the writing about it to not set me off. but i'll do my best.
it feels like my muscles are ripping off my bones, everything curls in on itself. then jumps back out. everything goes blurry and you can't breathe and you start to throw up and shit yourself at once and all you want is to not lose your food in your clothes, not in front of your workers. you pull at your hair and skin, cause for some reason you think that will help in that haze and delirium.
i don;t wanna write about after or what people saw or said. its embarrassing and a number of emotions i am uncomfortable with. i have some scratches on my face and arms but that's the worst of the visible signs left. it could have been worse, it has been worse before.
something Mark said yesterday has stuck with me though. "how do you daily manage this?" and i had to say "like this. i just try." cause i can't take medicine. the ones that have helped have rendered me unable to work or have a life. i'm a drone, a zombie, stupid. and i want a life. i want a life so much. i want what other people have. i'm not lazy, i want to work. i like being the girl that works 60 hours a week. that runs everything, is on top of things, does things. hits the gym like a beast, house clean and clothes done and food ready. hair and makeup right. and i just can't right now.
there are days where even getting up is hard. no, i don't wanna iron my clothes and blowdry my hair and put on makeup. you don't get it, i can barely lift my arms. grocery shopping when you're dragging a leg. going to work when you're almost sure someone is jamming a rod up your vagina? and i try to be positive, i really do. but its been 10 years and i don't know how to anymore at least not today, and certainly not yesterday.
and i'm reminded of things i've not that about in a while. one night at Montevallo, trying to to climb the stairs in Reynolds and i physically couldn't. i wasn't numb, i just couldn't do it. i ended up on my hands and knees pulling myself up both flights, crying. but i had to get up there, we had a show. and my doctor said to get more sleep.
i get now why i cosplay. cause can i just be someone else for a little while? someone who doesn't have all this? its escapism at its finest. its not a conscious choice, but it made sense today. i mean, everyone likes to get away sometimes. and i'm not living in a fantasy world, refusing to face reality. everyone has their thing that helps them just forget it all for a while, lay their troubles down. i just cover mine with a waist coat and skirt.
sometimes you need armor.
Monday, May 21, 2012
One time I ran into a barbed wire fence.
I did. i always claim that to be the most bad ass moment of my life. I was 9 and furiously running away from the 4th grade attempt of sneaking into the back of the Agrirama with the other sleepover guests at Anna's house. I forgot the rusty fence I had so graciously stood on for the other girls upon our entering. Both legs caught in the tetnis day dream and i was slung to the ground. I removed the barbs and cried the whole mile home.
the first situation in life where i can think of where something was explained away that now is just a piece of the bigger puzzle.
Can't think of a definitive moment my body started to really be a problem. but here are some other pieces.
I have never been athletic, but really wanted to play, be a part of something, make el madre happy. effort made all the difference and i loved softball and just worked my ass off. but i couldn't hold the lightest bat up for the entirety of a pitch. yeah, it hurt, but more than that my arms just wouldn't.
i was diagnosed with carpal tunnel at 12. a condition it takes years of repetitive movement to develop, like i was a 40 year old stenographer.
by the time i was in high school i woke up nauseous every day. from then until now i would say i throw up on average 3 times a week. i remember refusing to eat breakfast because it made me sick, still being told i'd get used to it.
often times my leg feels like its "about to fall off." the best sensation comparison i can give you is that i stuck it in the blood pressure machine by the Walgreens pharmacy desk. like there's a belt tourniquet style at my hip. 18 years old is the first time i remember that. walking into the kitchen dragging my leg, telling my mom something is wrong with my leg. they still tingle and go numb and get crazy on me.
for a month this year i didn't wear pants. at all. even the jeans constant contact with my legs, pelvis and unmentionables was unbearable. put some on today and the car ride over proved to be more than problematic.
my ears ring. all the time. i can only listen to one thing at a time. i end up complaining a lot about music over the tv, videos over music, phone conversations in the car...competing sounds in my head are too much to take. i sleep with a box fan or the tv on, otherwise i can hear things in my ears, in my head.
my digestive system doesn't work like it should. bathroom time is a chore and must be planed for.
i get head aches. bad ones. that start at the back of my head and travel through my jaw to my eye leading to blurred vision and the inability to open my eye, my mouth. my shoulders hunch and cramp.
i feel "electric" currents in my limbs. my memory is going. i am so tired and sore all the time that even folding the laundry can be painstaking.
i've had seizures. the first time, i passed out in Calculus and thrashed on the floor. again a month later. and periodically through out college til now. i was carried out of Palmer twice, to much embarrassment. it happened at friends houses. family. school. work. uncontrollable muscle spasms that left me writing around on the floor with people just watching.
all that is merely physical. and its plenty reason to welcome any and all drastic medical treatment. but the mental, emotional is what is really driving me. cause all that physical craziness has led to much worse. failed classes, lost jobs, lost friends. ruined relationships, a severe lack of self esteem and trust issues worth many a therapists 50 minute hour.
that's why i want to get better. cause if i don't feel like crap all the time, i will have more energy to be the friend you deserved. i will have the strength to stand up for myself more. i will be happier and more productive at work. i will return your calls and text messages. i will go out more, enjoy things more. i will not think you hate me, hate myself, or think God is punishing me.
the first situation in life where i can think of where something was explained away that now is just a piece of the bigger puzzle.
Can't think of a definitive moment my body started to really be a problem. but here are some other pieces.
I have never been athletic, but really wanted to play, be a part of something, make el madre happy. effort made all the difference and i loved softball and just worked my ass off. but i couldn't hold the lightest bat up for the entirety of a pitch. yeah, it hurt, but more than that my arms just wouldn't.
i was diagnosed with carpal tunnel at 12. a condition it takes years of repetitive movement to develop, like i was a 40 year old stenographer.
by the time i was in high school i woke up nauseous every day. from then until now i would say i throw up on average 3 times a week. i remember refusing to eat breakfast because it made me sick, still being told i'd get used to it.
often times my leg feels like its "about to fall off." the best sensation comparison i can give you is that i stuck it in the blood pressure machine by the Walgreens pharmacy desk. like there's a belt tourniquet style at my hip. 18 years old is the first time i remember that. walking into the kitchen dragging my leg, telling my mom something is wrong with my leg. they still tingle and go numb and get crazy on me.
for a month this year i didn't wear pants. at all. even the jeans constant contact with my legs, pelvis and unmentionables was unbearable. put some on today and the car ride over proved to be more than problematic.
my ears ring. all the time. i can only listen to one thing at a time. i end up complaining a lot about music over the tv, videos over music, phone conversations in the car...competing sounds in my head are too much to take. i sleep with a box fan or the tv on, otherwise i can hear things in my ears, in my head.
my digestive system doesn't work like it should. bathroom time is a chore and must be planed for.
i get head aches. bad ones. that start at the back of my head and travel through my jaw to my eye leading to blurred vision and the inability to open my eye, my mouth. my shoulders hunch and cramp.
i feel "electric" currents in my limbs. my memory is going. i am so tired and sore all the time that even folding the laundry can be painstaking.
i've had seizures. the first time, i passed out in Calculus and thrashed on the floor. again a month later. and periodically through out college til now. i was carried out of Palmer twice, to much embarrassment. it happened at friends houses. family. school. work. uncontrollable muscle spasms that left me writing around on the floor with people just watching.
all that is merely physical. and its plenty reason to welcome any and all drastic medical treatment. but the mental, emotional is what is really driving me. cause all that physical craziness has led to much worse. failed classes, lost jobs, lost friends. ruined relationships, a severe lack of self esteem and trust issues worth many a therapists 50 minute hour.
that's why i want to get better. cause if i don't feel like crap all the time, i will have more energy to be the friend you deserved. i will have the strength to stand up for myself more. i will be happier and more productive at work. i will return your calls and text messages. i will go out more, enjoy things more. i will not think you hate me, hate myself, or think God is punishing me.
Saturday, May 19, 2012
If i have to have brain surgery: things that concern me, volume 1.
I engage in some strange conversations some times. They can be very morbid, or just inappropriate and are often "what ifs". how would i handle something.
And my responses are usually misunderstood or completely out of left field.
Here's what i think about when i think about having brain surgery:
*maybe the scar will be gnarly. that would be awesome.
*i am sure the aftercare will be a bitch. how do you keep hair out of it? mine isn't long enough for pig tails.
*maybe i will lose weight. i'm into that.
*i think i will only be scared before for like a little. i mean, like dying scared.
*i don't want to tell people that will feel a need to contact me. i mean, if we're not speaking regularly then please don't send me well wishes.
my biggest worry over this is the aftercare. not the stitches and stuff, the not moving your neck. the "i'm at home and counting on someone else to handle EVERYTHING for 6 weeks." counting on someone else to
buy the groceries, cook, clean, run the bath, do the dishes, vacuum, do the laundry, put up clothes.
more than chores though:
wash my hair for me, dress me, bring me the remote, turn the lights off/on, adjust the pillows.
change the DVDs, bring me the phone, go to the store for a treat, rub my feet, charge my phone, adjust the temperature.
basically, everything. for at least a few weeks. i won't be able to lift anything. or turn my head. i won't want to move like at all. and i don't really see people lining up for that.
so there's the things that people have to do FOR me. but i'm also concerned about the things they will NOT get to do.
i won't be coming to your house. i won't be talking on the phone. i won't be doing the things you're used to from me.
basically, my i am terrified of my husband not taking this well. making it about him and the things he has to do now and the things he's not getting. he will have more chores and no sex. of any kind. i can't help him find his keys, find his clothes. have the food he wants magically appear in the fridge. get him directions. he wants so much and is used to so much from me. and i won't be able to do that.
thats it. i'm scared of him getting angry over the things he's not gonna get. not really the things he won't do for me.
i also don't want to shave more of my hair than i need to.
And my responses are usually misunderstood or completely out of left field.
Here's what i think about when i think about having brain surgery:
*maybe the scar will be gnarly. that would be awesome.
*i am sure the aftercare will be a bitch. how do you keep hair out of it? mine isn't long enough for pig tails.
*maybe i will lose weight. i'm into that.
*i think i will only be scared before for like a little. i mean, like dying scared.
*i don't want to tell people that will feel a need to contact me. i mean, if we're not speaking regularly then please don't send me well wishes.
my biggest worry over this is the aftercare. not the stitches and stuff, the not moving your neck. the "i'm at home and counting on someone else to handle EVERYTHING for 6 weeks." counting on someone else to
buy the groceries, cook, clean, run the bath, do the dishes, vacuum, do the laundry, put up clothes.
more than chores though:
wash my hair for me, dress me, bring me the remote, turn the lights off/on, adjust the pillows.
change the DVDs, bring me the phone, go to the store for a treat, rub my feet, charge my phone, adjust the temperature.
basically, everything. for at least a few weeks. i won't be able to lift anything. or turn my head. i won't want to move like at all. and i don't really see people lining up for that.
so there's the things that people have to do FOR me. but i'm also concerned about the things they will NOT get to do.
i won't be coming to your house. i won't be talking on the phone. i won't be doing the things you're used to from me.
basically, my i am terrified of my husband not taking this well. making it about him and the things he has to do now and the things he's not getting. he will have more chores and no sex. of any kind. i can't help him find his keys, find his clothes. have the food he wants magically appear in the fridge. get him directions. he wants so much and is used to so much from me. and i won't be able to do that.
thats it. i'm scared of him getting angry over the things he's not gonna get. not really the things he won't do for me.
i also don't want to shave more of my hair than i need to.
Thursday, May 17, 2012
You always said it was. Guess you were right.
How many times have any of us been told, "its all in your head?" You're mad over something no one else sees, have your feelings hurt over a comment that meant nothing, blowing things out of proportion. everyone says it or fears it at some point.
but how about when you doctor says that to you? again, and again. and the next doctor. for years. friends, family, co workers, teachers, don't have anything to say but finally, "snap out of it." you start to think you must be crazy, or maybe just that God hates you. you are the hypochondriac they said, you're just being dramatic, you want attention. see a shrink, your physical problems are merely manifestations of psychological issues.
its all in your head.
come to find out, you were right. it is. and i have the MRIs to prove it.
weeks ago my doctors found irregularities in my brain. my cerebellum is sinking into my spinal cord. sagging, if you will. my first thought was of old boobs. but yeah, it is. has been, for a long time. next post will be a pre game, a recap of how my body got here. so yeah, my brain is sinking into my neck. last check, 8mm lower than intended. doesn't sound like a lot. it is.
i have thoughts, ideas, supposals from doctors and research as to whats going on. don't really wanna throw specific names til the neurosurgeon gives it to me straight in two weeks. i wanted to blog about it, cause i've never heard of this until now. most of the time i'm cool with it, but occasionally it gives me the heebs and i gotta do something to feel better, talk it out. i never really understand how i feel about something until i talk/write about it.
so there. i hope its some small victory to those of you who told me, or thought, wow something's wrong with her. there was. it took 10 years to find out is all. i know i sound bitter, and i am, but mostly toward the situation. the idea that something could have been done sooner. and i have found snark to be a balm i'm comfortable with.
LYNjAMIN
but how about when you doctor says that to you? again, and again. and the next doctor. for years. friends, family, co workers, teachers, don't have anything to say but finally, "snap out of it." you start to think you must be crazy, or maybe just that God hates you. you are the hypochondriac they said, you're just being dramatic, you want attention. see a shrink, your physical problems are merely manifestations of psychological issues.
its all in your head.
come to find out, you were right. it is. and i have the MRIs to prove it.
weeks ago my doctors found irregularities in my brain. my cerebellum is sinking into my spinal cord. sagging, if you will. my first thought was of old boobs. but yeah, it is. has been, for a long time. next post will be a pre game, a recap of how my body got here. so yeah, my brain is sinking into my neck. last check, 8mm lower than intended. doesn't sound like a lot. it is.
i have thoughts, ideas, supposals from doctors and research as to whats going on. don't really wanna throw specific names til the neurosurgeon gives it to me straight in two weeks. i wanted to blog about it, cause i've never heard of this until now. most of the time i'm cool with it, but occasionally it gives me the heebs and i gotta do something to feel better, talk it out. i never really understand how i feel about something until i talk/write about it.
so there. i hope its some small victory to those of you who told me, or thought, wow something's wrong with her. there was. it took 10 years to find out is all. i know i sound bitter, and i am, but mostly toward the situation. the idea that something could have been done sooner. and i have found snark to be a balm i'm comfortable with.
LYNjAMIN
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