It was a normal day at Dr. Useless and Associates. The good, kind doctor was behind in his patient schedule. It's no surprise that you can always get an appointment with Dr. Useless. There is always a full waiting room of patients, patiently waiting for their allotted time to spend with Dr. Useless. For, you see, Dr. Useless is no ordinary doctor. He is really, really, very useless. He likes to talk about your favorite subject, chat about current events while he diagnoses his patients with useless nonsense meant to pacify and reassure his patients; providing them with information that insures that they will come back for more meaningless and sometimes damaging advice. That is why Dr. Useless is so loved by his patient patients. They need and crave his useless and ultimately damaging misinformation.
As he writes his scripts for some new-fangled poison or even old-fangled addictive poisons, for the hordes of addicts who come to Dr. Useless for their fix, Dr. Useless seems to really listen. He seems to really care. Sometimes, he even gives away some sample poisons courtesy of the drug-dealers who work for Pfizer, Beelzebub, and the other Demons of the Pharmaceutical Empire, reminding his patients to call 911 if they have a seizure or a rash. "But, don't worry, that won't happen. If you do, you can sue the drug company. [But not Dr. Useless.] Come back next week and we'll continue the treatment. Have a lollipop before you leave!"
Wednesday, November 21, 2007
Live the sadness hard
dying, illness, trying
I want you to know that I understand the pain of the perfectly abled. Living and making and just being fucking happy sucks. It's fucking hard. Sure I got my ticket book of excuses now. I... Oops. The meds. I'm back. I'm not the greatest at self-medicating. That's in the excuse book. I got all these new notes that read things like, "can't walk." "bg too high." "bg too low" "hour-long seizure" "i'm gonna die anyway." Ha! I wish. That last one is no excuse. We are all gonna die. That's the easy part. I need to re-learn how to live... again. And I wonder if, in five years, my nervous system will have another break-down. Right on schedule. So I got to live in-between these bouts of sickness. I got to.
Dying is easy because it puts you into a state of delirium. And you forget everything. Last year was all a dream. I was blurry-eyed and just buying my food and not seeing beyond my next rent check. Delirium is both beautiful and sad. You know you are just clinging. That the "demon has got hold of you." Or you, more likely, are fucking dying and don't know what for or why or what-the-fuck to do about it. So you buy some liver and hope that the red blood will cure you. You wash the dishes. You make your bed. You lie and wonder. You sleep and eat chocolate and candy and anything you want, because it doesn't matter while you are just getting skinnier. Eat all day.
Hide Everything. Throw out all the pills. Early. Like I did. I threw them out last Christmas. By March, I was digging through the pill box, going, "Where's the depakote? Where's the prednisone? Didn't I have some lithium?" That would make a good cocktail, maybe. But I had nuttin'. I threw out the lithium years ago.
Mania is a sign. Make every use of the mania that you can. Clean your house. Throw out shit. Delete and destroy. Save one razor-blade, so that it's old and crusty and when you need one, you won't feel like a suicidal jerk who, in fear, threw out all her razor-blades. It'll be so rusty and gross by the time....
And isn't there a more clever way to die? I recently learned that there's a walk-way along the Tri-Boro. You walk five miles. Whoda thunk? I guess it would be good if I ME ME ME had a bi-cycle. Anyway the water over the Harlem River is too shallow. My choice would be the old GWB. High over the Palisades, a long dive into the wonderful and beautiful Hudson. Nice.
Enjoy your fantasies. Remember that your suicide fantasy is all ego and no id. Your id is slipping away. Floating. Washing up one a craggly nook on the Jersey side. I always wanted to end up in heaven. (wink)
If you get to the point where you are sleeping all day, you will watch the boring tee vee with the sound off and try to read, then sleep some more. You will be far too tried to schlep to 138th Street on the West Side to off yourself. Besides, you have pretty good idea that you are gonna die soon anyway. Your brain is zero-firing zone. Connections are shutting down. I really enjoyed the bliss.
I felt a profound connection to the source of the life that was fading from me. And the source was my own and had no god-ly face. thank god. Dying is all "of this world" and a really good trip.
Now I need the courage to live, to live with the sickness, to live with the everyday, ordinary sadness and live it hard.
[edited 5.29.09 - Below is a less fanciful account of my descent toward insane blood sugars and my eventual dx as a failed pancreatic diabetic, a juvenile, type 1.5.]
At 29, I got sudden onset Stiff Man Syndrome. I got dx'ed a year later. I tested postive for the anti-Gad Antibody. Same one as diabetes..... But! My blood sugar levels were never tested.
When I was about 33, I remember going to the gyno and she pulled out her speculum and showed me a good 8 oz. of.... Gross! I thought I was eating too much sugar. I had no idea it was hanging around in my blood stream.
The night sweats began. The rapid heart beat. The cravings for fruit. Eating like a "pig".
Again, no one tested me. (She's old and skinny! Someone wrote "medical myopia" somewhere. Think that sums it up.)
At age 36, I was hospitalized with a bg of 1300 or so. They were surprised/shocked that I was not in a coma.
I had dropped to 88lbs. from a norm of 125-135. I didn't know what was happening to me. When the delirium began, I was resigned to peacefully die at home when my brother called and came over.
This is what I had been googling (when I could still read and write):
excessive thirst
constant urination
excessive hunger
weight loss
nausea
And I came up with sites for hiking! (Bring lots of water!)
My honeymoon lasted about 6 months - got a 6 A1C once. I got sick of eggs and made a sculpture out of my egg cartons. I soon learned the wonders of conscious-choice diabulemia. I was angry that they pumped full of 40 lb. of saline water in the hospital. The swelling never fully went down. Needless to say, the "skip the insulin" weight-loss plan did not work. I am still suffering the consequences. Had to double my Novolog. My latest A1C was 9 -- which is better than 12 (last September).
I am turning 40 this year, having celebrated 3 years on insulin, which immediately made me sane (God bless the Pig!) but I suspect insulin and management have given me all the "side effects" that I never suffered for the 5+ (?) years that my BS was jumping up and down. Now I get colds and other common illnesses, injuries don't heal, a fabu heart murmur appeared, my legs are cramping at night, the night sweats continue.... And Stiff Man disease does not take a day off.
I suppose my D is very brittle and I finally agreed to try the pump out - soon.
So, my query for you, my fellow LADA's.... Is it harder to deal, manage, escape the nasty consequences when diagnosed as an adult with other pre-existing conditions; without the bouncy strength and a young body to adjust to it....? That's my feeling. I had been living with it, letting it wreck havoc on my bodily system for years - perhaps as much as 6 years. The last year I went into a rapid decline.
I want you to know that I understand the pain of the perfectly abled. Living and making and just being fucking happy sucks. It's fucking hard. Sure I got my ticket book of excuses now. I... Oops. The meds. I'm back. I'm not the greatest at self-medicating. That's in the excuse book. I got all these new notes that read things like, "can't walk." "bg too high." "bg too low" "hour-long seizure" "i'm gonna die anyway." Ha! I wish. That last one is no excuse. We are all gonna die. That's the easy part. I need to re-learn how to live... again. And I wonder if, in five years, my nervous system will have another break-down. Right on schedule. So I got to live in-between these bouts of sickness. I got to.
Dying is easy because it puts you into a state of delirium. And you forget everything. Last year was all a dream. I was blurry-eyed and just buying my food and not seeing beyond my next rent check. Delirium is both beautiful and sad. You know you are just clinging. That the "demon has got hold of you." Or you, more likely, are fucking dying and don't know what for or why or what-the-fuck to do about it. So you buy some liver and hope that the red blood will cure you. You wash the dishes. You make your bed. You lie and wonder. You sleep and eat chocolate and candy and anything you want, because it doesn't matter while you are just getting skinnier. Eat all day.
Hide Everything. Throw out all the pills. Early. Like I did. I threw them out last Christmas. By March, I was digging through the pill box, going, "Where's the depakote? Where's the prednisone? Didn't I have some lithium?" That would make a good cocktail, maybe. But I had nuttin'. I threw out the lithium years ago.
Mania is a sign. Make every use of the mania that you can. Clean your house. Throw out shit. Delete and destroy. Save one razor-blade, so that it's old and crusty and when you need one, you won't feel like a suicidal jerk who, in fear, threw out all her razor-blades. It'll be so rusty and gross by the time....
And isn't there a more clever way to die? I recently learned that there's a walk-way along the Tri-Boro. You walk five miles. Whoda thunk? I guess it would be good if I ME ME ME had a bi-cycle. Anyway the water over the Harlem River is too shallow. My choice would be the old GWB. High over the Palisades, a long dive into the wonderful and beautiful Hudson. Nice.
Enjoy your fantasies. Remember that your suicide fantasy is all ego and no id. Your id is slipping away. Floating. Washing up one a craggly nook on the Jersey side. I always wanted to end up in heaven. (wink)
If you get to the point where you are sleeping all day, you will watch the boring tee vee with the sound off and try to read, then sleep some more. You will be far too tried to schlep to 138th Street on the West Side to off yourself. Besides, you have pretty good idea that you are gonna die soon anyway. Your brain is zero-firing zone. Connections are shutting down. I really enjoyed the bliss.
I felt a profound connection to the source of the life that was fading from me. And the source was my own and had no god-ly face. thank god. Dying is all "of this world" and a really good trip.
Now I need the courage to live, to live with the sickness, to live with the everyday, ordinary sadness and live it hard.
[edited 5.29.09 - Below is a less fanciful account of my descent toward insane blood sugars and my eventual dx as a failed pancreatic diabetic, a juvenile, type 1.5.]
At 29, I got sudden onset Stiff Man Syndrome. I got dx'ed a year later. I tested postive for the anti-Gad Antibody. Same one as diabetes..... But! My blood sugar levels were never tested.
When I was about 33, I remember going to the gyno and she pulled out her speculum and showed me a good 8 oz. of.... Gross! I thought I was eating too much sugar. I had no idea it was hanging around in my blood stream.
The night sweats began. The rapid heart beat. The cravings for fruit. Eating like a "pig".
Again, no one tested me. (She's old and skinny! Someone wrote "medical myopia" somewhere. Think that sums it up.)
At age 36, I was hospitalized with a bg of 1300 or so. They were surprised/shocked that I was not in a coma.
I had dropped to 88lbs. from a norm of 125-135. I didn't know what was happening to me. When the delirium began, I was resigned to peacefully die at home when my brother called and came over.
This is what I had been googling (when I could still read and write):
excessive thirst
constant urination
excessive hunger
weight loss
nausea
And I came up with sites for hiking! (Bring lots of water!)
My honeymoon lasted about 6 months - got a 6 A1C once. I got sick of eggs and made a sculpture out of my egg cartons. I soon learned the wonders of conscious-choice diabulemia. I was angry that they pumped full of 40 lb. of saline water in the hospital. The swelling never fully went down. Needless to say, the "skip the insulin" weight-loss plan did not work. I am still suffering the consequences. Had to double my Novolog. My latest A1C was 9 -- which is better than 12 (last September).
I am turning 40 this year, having celebrated 3 years on insulin, which immediately made me sane (God bless the Pig!) but I suspect insulin and management have given me all the "side effects" that I never suffered for the 5+ (?) years that my BS was jumping up and down. Now I get colds and other common illnesses, injuries don't heal, a fabu heart murmur appeared, my legs are cramping at night, the night sweats continue.... And Stiff Man disease does not take a day off.
I suppose my D is very brittle and I finally agreed to try the pump out - soon.
So, my query for you, my fellow LADA's.... Is it harder to deal, manage, escape the nasty consequences when diagnosed as an adult with other pre-existing conditions; without the bouncy strength and a young body to adjust to it....? That's my feeling. I had been living with it, letting it wreck havoc on my bodily system for years - perhaps as much as 6 years. The last year I went into a rapid decline.
Saturday, June 30, 2007
Updated and spell-checked: The beginning.... of the Spazz
Jan. 2001 - "The bed bug bit me, " I told the doctor at Bellevue. "I know that DDT killed off most of the bed bugs after World War One. I thought they only existed in nineteenth century novels! On trains travelling through Siberia! Isn't that funny? I hear they are back. I saw one. And it bit me! The bed bug bit me! I've had the itchies ever since. And my back is morphing out of shape, right in front of my eyes!" I understood that I was rambling, but I was desperate for a reason, a clue. I had already seen a dermatologist who did nothing and charged me $500 for it. The doctor nodded and wrote something down. Doctors don't look at patients. They examine information.
I had a seizure the day before. That's why I was there, in Bellevue's emergency room. The doctor noted that I was on ecstacy at the time of this grand-mal seizure (the shakes, the convulsions, the whole nine). She assumed I had a bad reaction to an illegal substance. The only conclusion she could reach, based on the facts. Facts don't include things like "bed bugs," "the itchies," "morphing." Bed bugs are imaginary. Morphing is a comic book creation and she had probably never read a nineteenth-century novel. I suppose she thought I was schizophrenic as well as a drug addict. She sent me for an MRI anyway.
I had no idea what was wrong with me. Within the space of three months I went from dancing and acting five nights a weeks to uncontrollable spasms, itching, pain and no sleep. I couldn't wear loose clothing because anything that tickled the surface of my back sent me into spasms of pain. I tried to explain that I have had petit-mal seizures since I was a kid. An MRI? Been there. Done that. Something was wrong with me. My body was breaking down. "I also fainted on New Year's Eve. No drugs. No alcohol," I said. The doctor nods and writes something down.
A second seizure ocurred after a five-hour wait for a follow-up appointment with the Bellevue neurologist. Three weeks after my first seizure. I wasn't on drugs during the second seizure. I was taking a bath, actually, trying to relieve the pain and stress of being in the hospital all day. My boyfriend had to save me from drowning. I got a script for an anti-seizure drug called Tegretol.
Friday, the thirteenth of February, 2001. My doctor, my overpriced "alternative" doctor with the three feet long dreads and eight children and a thriving practice in the Slope, sent me to the hospital nearby. I had started to react to the epilepsy drug and I was suddenly (since the last visit) bruised and swollen. I had already spent thousands in his pretty office. He said, "I consider myself good at diagnosis but...." shaking his head. He said he would call his call "friend" - code for the "other black guy at med school" who at worked at Methodist Hospital and sent me over there. He said his "friend" would look out for me. "It's a good hospital," he assured me. These two men could not have been more different. Dr. Skeptical was a surgeon, believed "alternative" medicine" was nonsense and never showed up in the emergency room. Then he tortured me. Read on.
I was once again in an emergency room begging for help. "Do you drink?" the triage nurse asked me. "Uh, no, " I replied. I hadn't been drinking, in truth. "Are you an alcoholic?" was the next question. "An alcoholic!" I guffawed. When I say guffaw, I mean guffaw. I am a comedian. I was two months without sleep at this point. Everything seem hilarious and tragic all at the same time. "An alcoholic. Why not? Sure! I'm Irish. A family reunion means half the crowd takes off for an AA meeting!" I thought I was a cut-up.
Someone with a tag that read "MD" asked me why I didn't "look it up on the internet"? Not kidding.
They sent me for an X-Ray. I refused to put on the hospital gown. I told them the fabric... the itchies... the pain.... You should have seen the look on his face, this X-Ray technician. Now he had seen it all, I guess. I refused to wear the hospital gown. He had a naked, good-looking (some say "hot"), thirty year-old woman jumping around in front of him. The shrink came to see me next.
Dr. Vizner, the emergency-room psychiatrist decided I was bi-polar. She asked me to sign myself into the psychiatric ward. "Free medical care, " she coo'ed. "No way, doc. You are crazy. I tell you, I am in pain. Physical, tortuous pain. Like someone is ripping me apart, tearing at the muscles around my midsection." She couldn't get me to sign, so she left.
February 14, 2001, still in the emergency of New York Methodist Hospital. 2AM. No Dr. Skeptical. No neurologist in sight. There are never any neurologists in emergency rooms. I doubt they would useful even if they were. Neurologists don't like to touch people. They get to hit people with little hammers. Dr. Skeptical had yet to make an appearance. Crying. Screaming in pain. A nurse finally took pity on me and slipped me 5 mg of Valium. I finally slept.
Three months of fitful sleeping, with a book under my back so I could not touch the mattress and "the spot" on my back that set off the spasmatic, tortuous, itching sensation, two grand-mal seizures and three weeks of zero sleep. A kind nurse finally got it to stop with a little common sense.
While I slept, thanks to the "V," my 6'2" boyfriend curled up at my feet on the hospital bed to catch some zzz's himself. Dr. Vizner woke us a few hours later. When we were woken, he left for a moment, to use the restroom. Dr. Vizner took the opportunity to get me to sign. I was too weary to resist. I could only swim in the bliss of a few hours sleep. I signed myself into the psyche ward.
My boyfriend flipped out when he returned. They wouldn't listen to him. They thought (or assumed, like the drug thing, like the crazy thing) that he beat me and that was why I was bruised "in the groin area." (Turns it was the Tegretol, bruising and swelling both listed as reactions.) That was not considered at the time. I was more likely a crazy, beaten, drug-fiend hysteric who wouldn't accept their offer of pychiatric help.
I clearly remember my mother entering the triage ward. Oh, yes, I never left triage during the eight hours in New York Methodist Hospital Emergency Ward. I was in a bed in a huge room. It was curtained so my boyfriend could sit there and hold my hand. More likely though, I got a curtained bed because they didn't want to deal with me. I could peek out, though. I saw my mother charge into the room. "Where is she?" she demanded. My mother is a grade school teacher. She is used to being in charge. My boyfriend told her about the bait-n-switch by the shrink (a bad word for psychiatrist, I know, but I think Dr.Vizner deserves it.)
Mother got me un-signed to the pysche ward. She got me a hospital bed. She took control. I stayed in Methodist for a week. I fianlly met Dr. Skeptical. I have the paperwork. It's hilarious! "Lordosis unremarkable, possibly bi-polar, refuses psyciatric help, grossly unremarkable study of the spine, no significant neurological disorder, no known medications...." Hello! What about the Tegretol? Principal diagnosis: bruising in groin area. For three days, I screamed and furiously pressed the nurse button. Every few hours, a frustrated nurse would, with a sigh, administer another shot of Percodan or one of those drugs they give you when you got a broken leg. I was no longer cracking jokes. I was very very angry. What about the valium that had worked so well in the emergency? It's addictive, I was told. Huh? I told them I had never taken it before in my life. "But you tested positive for it," said Dr. Skeptical. They gave it to me in the emergency room! "Oh. Well, it's still addictive."
On the third day, I received a final visit from the shrink whom I told, in no uncertain terms, to fuck off. They finally gave me some valium. Three more days, with the bruising lessened (no more Tegretol) and nothing further to conclude, I was released with a script for a valium and a huge bill.
Eight months, dozens of doctors, and fifteen thousand or so (cash, paid) dollars later, I found out I had Stiff Man Syndrome. Dr. Frucht (swear that is his name) at the famed Columbia Presbyterian was so thrilled by his diagnosis. "Confirmed by the Mayo Clinic!" he said, jumping with joy. He got to diagnose a Stiff Man! My mother was angry when I burst out laughing. I got Stiff Man? Which is more "crazy?" Art or science? You decide.
I love the name of my disease. Only a comedian would get a disease called Stiff Man. Now I've always liked 'em stiff, but.... tah-dum dum.
My old psychiatrist eventually assured me I wasn't crazy. I have a physical illness.
It's an auto-immunity, like chronic fatigue, that has left my back disfigured with severe lordosis. Valium saved my life. Thank you Dr. Leo Sternbach. It controlled the pain. It controlled the symptoms. It took the three months to get a prescription because of my "drug history." Just a little reminder not to be too honest with your doctor. I told them that I had been using marijuana (a lot) to control the pain. And I was up all night and my brain was fried from pain (and pot) and lack of sleep. If I were a real drug fiend, I think, I should have taken heroin. Heroin might have helped. I can say this in retrospect. At the time, though, it didn't occur to me to try heroin or opium or some sort of muscle relaxant. Marijuana is not a great muscle relaxant, but it calmed me and helped me to eat. Pot heightens a person's awareness. I was very aware of the pain, the searing, tearing pain. I was becoming paranoid. Weed didn't help all that much. I can say this in retrospect. It calmed me on the outside, so other people could deal with me.
And the Stiff Man lives. She even walks again, albeit with her ass sticking out. She takes valium 5 times a day. She practices her own unique yoga and has created her own dance moves. She is even performing again.
I always wanted to be funny. Now, I am also funny looking. I am the woman who walks with her ass sticking out. I like to say that I have Ass Disease. I have a a bulging stomach that makes me look pregnant or my curved (like a swan, says my darling friend) back; so arched and protruding that I look like a woman with a severe case of Ass-itude. I walk with a waddle and the accompanying wiggle.
I want, someday, for my story to be published so people can see, up-close and personal, the limitations of scientific (medical) inquiry, the ineptitude of most doctors, the prejudice against women and "ethnic" people that inform medical diagnosis, and, perhaps, how far we have to travel to finally become our own special self.
I had a seizure the day before. That's why I was there, in Bellevue's emergency room. The doctor noted that I was on ecstacy at the time of this grand-mal seizure (the shakes, the convulsions, the whole nine). She assumed I had a bad reaction to an illegal substance. The only conclusion she could reach, based on the facts. Facts don't include things like "bed bugs," "the itchies," "morphing." Bed bugs are imaginary. Morphing is a comic book creation and she had probably never read a nineteenth-century novel. I suppose she thought I was schizophrenic as well as a drug addict. She sent me for an MRI anyway.
I had no idea what was wrong with me. Within the space of three months I went from dancing and acting five nights a weeks to uncontrollable spasms, itching, pain and no sleep. I couldn't wear loose clothing because anything that tickled the surface of my back sent me into spasms of pain. I tried to explain that I have had petit-mal seizures since I was a kid. An MRI? Been there. Done that. Something was wrong with me. My body was breaking down. "I also fainted on New Year's Eve. No drugs. No alcohol," I said. The doctor nods and writes something down.
A second seizure ocurred after a five-hour wait for a follow-up appointment with the Bellevue neurologist. Three weeks after my first seizure. I wasn't on drugs during the second seizure. I was taking a bath, actually, trying to relieve the pain and stress of being in the hospital all day. My boyfriend had to save me from drowning. I got a script for an anti-seizure drug called Tegretol.
Friday, the thirteenth of February, 2001. My doctor, my overpriced "alternative" doctor with the three feet long dreads and eight children and a thriving practice in the Slope, sent me to the hospital nearby. I had started to react to the epilepsy drug and I was suddenly (since the last visit) bruised and swollen. I had already spent thousands in his pretty office. He said, "I consider myself good at diagnosis but...." shaking his head. He said he would call his call "friend" - code for the "other black guy at med school" who at worked at Methodist Hospital and sent me over there. He said his "friend" would look out for me. "It's a good hospital," he assured me. These two men could not have been more different. Dr. Skeptical was a surgeon, believed "alternative" medicine" was nonsense and never showed up in the emergency room. Then he tortured me. Read on.
I was once again in an emergency room begging for help. "Do you drink?" the triage nurse asked me. "Uh, no, " I replied. I hadn't been drinking, in truth. "Are you an alcoholic?" was the next question. "An alcoholic!" I guffawed. When I say guffaw, I mean guffaw. I am a comedian. I was two months without sleep at this point. Everything seem hilarious and tragic all at the same time. "An alcoholic. Why not? Sure! I'm Irish. A family reunion means half the crowd takes off for an AA meeting!" I thought I was a cut-up.
Someone with a tag that read "MD" asked me why I didn't "look it up on the internet"? Not kidding.
They sent me for an X-Ray. I refused to put on the hospital gown. I told them the fabric... the itchies... the pain.... You should have seen the look on his face, this X-Ray technician. Now he had seen it all, I guess. I refused to wear the hospital gown. He had a naked, good-looking (some say "hot"), thirty year-old woman jumping around in front of him. The shrink came to see me next.
Dr. Vizner, the emergency-room psychiatrist decided I was bi-polar. She asked me to sign myself into the psychiatric ward. "Free medical care, " she coo'ed. "No way, doc. You are crazy. I tell you, I am in pain. Physical, tortuous pain. Like someone is ripping me apart, tearing at the muscles around my midsection." She couldn't get me to sign, so she left.
February 14, 2001, still in the emergency of New York Methodist Hospital. 2AM. No Dr. Skeptical. No neurologist in sight. There are never any neurologists in emergency rooms. I doubt they would useful even if they were. Neurologists don't like to touch people. They get to hit people with little hammers. Dr. Skeptical had yet to make an appearance. Crying. Screaming in pain. A nurse finally took pity on me and slipped me 5 mg of Valium. I finally slept.
Three months of fitful sleeping, with a book under my back so I could not touch the mattress and "the spot" on my back that set off the spasmatic, tortuous, itching sensation, two grand-mal seizures and three weeks of zero sleep. A kind nurse finally got it to stop with a little common sense.
While I slept, thanks to the "V," my 6'2" boyfriend curled up at my feet on the hospital bed to catch some zzz's himself. Dr. Vizner woke us a few hours later. When we were woken, he left for a moment, to use the restroom. Dr. Vizner took the opportunity to get me to sign. I was too weary to resist. I could only swim in the bliss of a few hours sleep. I signed myself into the psyche ward.
My boyfriend flipped out when he returned. They wouldn't listen to him. They thought (or assumed, like the drug thing, like the crazy thing) that he beat me and that was why I was bruised "in the groin area." (Turns it was the Tegretol, bruising and swelling both listed as reactions.) That was not considered at the time. I was more likely a crazy, beaten, drug-fiend hysteric who wouldn't accept their offer of pychiatric help.
I clearly remember my mother entering the triage ward. Oh, yes, I never left triage during the eight hours in New York Methodist Hospital Emergency Ward. I was in a bed in a huge room. It was curtained so my boyfriend could sit there and hold my hand. More likely though, I got a curtained bed because they didn't want to deal with me. I could peek out, though. I saw my mother charge into the room. "Where is she?" she demanded. My mother is a grade school teacher. She is used to being in charge. My boyfriend told her about the bait-n-switch by the shrink (a bad word for psychiatrist, I know, but I think Dr.Vizner deserves it.)
Mother got me un-signed to the pysche ward. She got me a hospital bed. She took control. I stayed in Methodist for a week. I fianlly met Dr. Skeptical. I have the paperwork. It's hilarious! "Lordosis unremarkable, possibly bi-polar, refuses psyciatric help, grossly unremarkable study of the spine, no significant neurological disorder, no known medications...." Hello! What about the Tegretol? Principal diagnosis: bruising in groin area. For three days, I screamed and furiously pressed the nurse button. Every few hours, a frustrated nurse would, with a sigh, administer another shot of Percodan or one of those drugs they give you when you got a broken leg. I was no longer cracking jokes. I was very very angry. What about the valium that had worked so well in the emergency? It's addictive, I was told. Huh? I told them I had never taken it before in my life. "But you tested positive for it," said Dr. Skeptical. They gave it to me in the emergency room! "Oh. Well, it's still addictive."
On the third day, I received a final visit from the shrink whom I told, in no uncertain terms, to fuck off. They finally gave me some valium. Three more days, with the bruising lessened (no more Tegretol) and nothing further to conclude, I was released with a script for a valium and a huge bill.
Eight months, dozens of doctors, and fifteen thousand or so (cash, paid) dollars later, I found out I had Stiff Man Syndrome. Dr. Frucht (swear that is his name) at the famed Columbia Presbyterian was so thrilled by his diagnosis. "Confirmed by the Mayo Clinic!" he said, jumping with joy. He got to diagnose a Stiff Man! My mother was angry when I burst out laughing. I got Stiff Man? Which is more "crazy?" Art or science? You decide.
I love the name of my disease. Only a comedian would get a disease called Stiff Man. Now I've always liked 'em stiff, but.... tah-dum dum.
My old psychiatrist eventually assured me I wasn't crazy. I have a physical illness.
It's an auto-immunity, like chronic fatigue, that has left my back disfigured with severe lordosis. Valium saved my life. Thank you Dr. Leo Sternbach. It controlled the pain. It controlled the symptoms. It took the three months to get a prescription because of my "drug history." Just a little reminder not to be too honest with your doctor. I told them that I had been using marijuana (a lot) to control the pain. And I was up all night and my brain was fried from pain (and pot) and lack of sleep. If I were a real drug fiend, I think, I should have taken heroin. Heroin might have helped. I can say this in retrospect. At the time, though, it didn't occur to me to try heroin or opium or some sort of muscle relaxant. Marijuana is not a great muscle relaxant, but it calmed me and helped me to eat. Pot heightens a person's awareness. I was very aware of the pain, the searing, tearing pain. I was becoming paranoid. Weed didn't help all that much. I can say this in retrospect. It calmed me on the outside, so other people could deal with me.
And the Stiff Man lives. She even walks again, albeit with her ass sticking out. She takes valium 5 times a day. She practices her own unique yoga and has created her own dance moves. She is even performing again.
I always wanted to be funny. Now, I am also funny looking. I am the woman who walks with her ass sticking out. I like to say that I have Ass Disease. I have a a bulging stomach that makes me look pregnant or my curved (like a swan, says my darling friend) back; so arched and protruding that I look like a woman with a severe case of Ass-itude. I walk with a waddle and the accompanying wiggle.
I want, someday, for my story to be published so people can see, up-close and personal, the limitations of scientific (medical) inquiry, the ineptitude of most doctors, the prejudice against women and "ethnic" people that inform medical diagnosis, and, perhaps, how far we have to travel to finally become our own special self.
Sunday, January 21, 2007
query details
That blank page with the quote:
"There are challenged people and soon-to-be-challenged people." - Mangina, 2006.
Chapter Descriptions.
a. it's just your nerves [the beginning. background info.]
b. why don't you look it up on the internet? [the diagnosis drama and stupid doctors]
c. it's just your mind. [newly Dx'ed, the miracle cure and stupid hippies]
d. you can pick things up with your toes! [living with it. accepting. not getting mad when people pet my belly.]
e. diabetes? not a big deal. [the future will come]
"There are challenged people and soon-to-be-challenged people." - Mangina, 2006.
Chapter Descriptions.
a. it's just your nerves [the beginning. background info.]
b. why don't you look it up on the internet? [the diagnosis drama and stupid doctors]
c. it's just your mind. [newly Dx'ed, the miracle cure and stupid hippies]
d. you can pick things up with your toes! [living with it. accepting. not getting mad when people pet my belly.]
e. diabetes? not a big deal. [the future will come]
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