I am full of unmitigated rage at this very moment! If I am told by one more fucking medical professional that proper CPAP compliance is 100% effective in treating obstructive sleep apnea (OSA), I might just smack him.
I sleep for crap. I have moderate OSA. This means that, untreated, I stop breathing 30-50 times per hour while sleeping. My personal numbers indicate that I stop breathing roughly every minute and a half. (That means that my brain stem wakes me, almost to consciousness, roughly every third minute, so that I can breath.) This means that my REM onset is dramatically delayed, and, if it occurs at all, it occurs during an earlier stage of sleep than it should and is not as effective as it is in everyone else. As a result, I constantly display the mental and physical symptoms of chronic sleep deprivation.
Consider all of that for a few moments before I continue. Untreated, I wake up, just to the brink of consciousness, once every third minute the entire time I try to sleep.
I talk in my sleep because my REM isn't occurring during the correct phase of sleep. I walked in my sleep as a child. I'm not 100% sure I don't still do so occasionally. As a child, every morning began with my mother dragging me out of the bed, with me screaming and crying and begging to stay in the bed. My friends, family, and partners have known for years that I'm a "Ripley van Winkle" because when I'm not sleeping, I'm a temper-laden ass-kicking Tasmanian Devil. I was unsuccessfully treated for depression (through both talk and pharmacological therapy) for years before I swore both off.
Saying that "I've never had a good night's sleep in my life" is an epic failure in describing the magnitude of what I've dealt with on a daily basis ever since I can remember. Even with CPAP therapy, today, I have to allow 10 hours for sleep, that means 11 for wind-down and wake-up. Approaching 40, I'm beginning to develop health problems that I am positive are provoked by my physiological inability to sleep. I'm petrified of dying from an apnea-induced heart attack like so many untreated men in their 50s do.
I've quit college twice because of falling asleep at the wheel. I've been the only person "laid off" of jobs. I was publicly demoted from my only leadership position. I'm the smartest person I know, and the hardest worker I've ever seen, but the lack of the degree I can't manage to get, my unreliability at getting to the fucking office on time, and my emotional instability (read: temper) have crippled my career advancement.
I've had two general-anesthesia surgeries to complete three procedures on my nose, septum, and sinuses. These surgeries made my CPAP more effective, but it hasn't fixed me yet. All of my mental and physical sleep-deprivation symptoms are improved, but not gone.
The fact that I've even been diagnosed with OSA is odd because it's unusual in women. The fact that I'm overweight doesn't help because weight loss supposedly treats OSA almost as well as CPAP compliance does. The medical people don't seem to want to understand that I struggled with this daily as a child, not to mention when I was 5'6" and 120 lbs. They just keep saying, "Lose weight." I've been trying, but it's damned difficult when a lack of quality sleep leaves you constantly sluggish.
I can't seem to make any of the doctors, except one single pulmonologist who I honestly think doesn't know what to do with me, understand that if I'm a female with OSA, maybe something else is odd? Maybe? Only the pulmonologist will admit that OSA isn't 100% effective, but he has no answers. Oh, and a sleep technologist (puts the squid bits on your head during a sleep study, of which I've had 6) admitted it, too, but she's not a doctor, so she can't treat me. Oh, and my boyfriend doesn't believe it anymore, because he's seen me snore and apnea while I was wearing my mask.
And again today, I get told by an ENT surgeon who can do the surgeries (pulling tongue base forward, uvulectomy, etc.) that "CPAP is 100% effective when the patient is compliant."
Check it: My goddamned boyfriend is a medical professional, and he says that I am the most compliant patient he has ever seen. Whether it's taking antibiotics on schedule and to completion, performing painful wound cleanings at home, going to follow-up visits "when I feel fine," or anything else, my mindset is this: Why pay these people a ton of money to tap their education and experience just to ignore their guidance? What's the likelihood they're going to do their jobs (healing me) effectively if I don't do my part?
Just like everything else medical, I do what I'm supposed to do with my CPAP. I clean my equipment. I replace comsumables when needed. I pack it carefully and take it out of town on road trips, like a pet. I take it in for calibration every so often. I wear it every single time I sleep, even for a short nap. I do all of these things hoping against hope that somehow, after almost 10 years of compliance, it will give me the Holy Grail which I seek -- A.Good.Night's. Sleep.
And again, today, the backhanded "It's your own fault."
So, I hereby scream from the rooftop of The Jane Project, to every single person in the entire medical establishment who will look me in the face and tell me that the fault is mine, that I must somehow be non-compliant:
Fuck you.
I have this daydream where I win the lottery, the big lottery, and I have billions of dollars to play with. I will then track back every single medical professional who has ever said "CPAP is 100% effective when the patient is compliant," or some derivative of that statement, and pay them to sit on the left side of a conference room.
On the right side of the conference room, I seat the three medical professionals that have admitted to me that CPAP is only 99% effective when the patient is compliant.
Then I stand in front of them all and say, "You, on the left, go try and accomplish anything (anything!) with 11 hours a day taken from you, and the other 13 full of Benadryl. Just for a weekend. I dare you. See how I feel, learn what I deal with every.single.day. Remember that that's what I deal with every day when I know for a fucking fact that I do everything any of you has ever said to me. Then, all of you, hook me up to whatever you want, and watch me sleep. Watch my compliance. Listen to me. See what happens. See what I can't tell you. Listen to the man who's slept beside me more times than I can count, listening to me breath for more hours than anyone should have to. Listen to him, because he knows more than you do about me. Then, all of you, leave your preconceptions about what the textbooks say at the door and fucking fix me, and the rest of my money is split amongst you with an extra share going to the three on the right for actually knowing what they were talking about and for believing me."
Thank you all for listening.
~Riot.Jane
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Our Broken Healthcare System
As if we needed more evidence that the US healthcare system is fundamentally broken, consider the story of Starla Darling, a pregnant 27-year-old mother who was laid off when Archway & Mother's Cookie Company in Ashland, Ohio filed for Chapter 11. With her job went her health insurance.
Starla began her maternity leave on October 1, 2008. Two days later, on October 3, Archway employees received a letter advising them that their jobs would end and their health insurance would be terminated on October 6. COBRA wsn't an option because the company was self-insured (administrated by Blue Cross Blue Shield), and the plan was being terminated.
So, Starla immediately did what any pregnant woman would do when unexpectedly laid off of an 8-year job who fears the loss of her health insurance: She called her midwife and insisted that her labor be induced and her child born within the three-day window in which she still had medical coverage.
Because her first child's delivery bill was approximately $9,000 three years before, and because she knew she would never be able to pay that amount for her second child's delivery, she decided "that we were getting this baby out, and it was going to be paid for."
On October 5, her delivery was induced, but excessive bleeding mandated an emergency cesarean section. Starla's daughter Kathryn was born three weeks early, and both are doing fine.
Because of the more than $700,000 in medical set-aside arrears that Archway was in when it shuttered, Blue Cross Blue Shield has denied payment for Starla's delivery based upon the plan's termination (i.e. no money, no plan, no coverage). She's now on the hook for more than $17,000 for the emergency cesarean section.
Starla hasn't been able to obtain unemployment benefits because recovering from the emergency cesarean section has left her "unable to work." Her husband Derek and her father Frank Phillips were also recently laid off, the father also from Archway the same day Starla was, after having worked there for 24 years.
Further reading available.
~Riot.Jane
Starla began her maternity leave on October 1, 2008. Two days later, on October 3, Archway employees received a letter advising them that their jobs would end and their health insurance would be terminated on October 6. COBRA wsn't an option because the company was self-insured (administrated by Blue Cross Blue Shield), and the plan was being terminated.
So, Starla immediately did what any pregnant woman would do when unexpectedly laid off of an 8-year job who fears the loss of her health insurance: She called her midwife and insisted that her labor be induced and her child born within the three-day window in which she still had medical coverage.
Because her first child's delivery bill was approximately $9,000 three years before, and because she knew she would never be able to pay that amount for her second child's delivery, she decided "that we were getting this baby out, and it was going to be paid for."
On October 5, her delivery was induced, but excessive bleeding mandated an emergency cesarean section. Starla's daughter Kathryn was born three weeks early, and both are doing fine.
Because of the more than $700,000 in medical set-aside arrears that Archway was in when it shuttered, Blue Cross Blue Shield has denied payment for Starla's delivery based upon the plan's termination (i.e. no money, no plan, no coverage). She's now on the hook for more than $17,000 for the emergency cesarean section.
Starla hasn't been able to obtain unemployment benefits because recovering from the emergency cesarean section has left her "unable to work." Her husband Derek and her father Frank Phillips were also recently laid off, the father also from Archway the same day Starla was, after having worked there for 24 years.
Further reading available.
~Riot.Jane
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Fat
I am fat.
I have always been fat.
When I was a chunky toddler people would tell my mom how cute I was and she had my picture taken at the fancy photo studios in the department stores. She took endless pictures of my cute dimpled ass as I raced across the living room. She filmed me eating cake. She rewarded me with candy for good deeds.
When I was a fat child people began to tell my mother I would become obese soon if she didn’t do something. She would pat my hand when people were thoughtless. She would buy me ice cream sundays to help me to feel better. When I was 7 she took me to Sears to have my picture done in a pink dress that looked like a dollop of strawberry icing with my red hair all done up in banana curls like Nelly from "Little House On the Prairie". I remember wearing white patent leather Mary Janes and holding my mama’s hand as we went through the store. I remember thinking I looked exactly like Nelly from "Little House on the Prairie", only better, on account of Nelly being such a wicked child and I had just helped watch my little sister that very morning.
When we got to the studio another mother was in front of us with her own daughter who looked like a real-live princess in her white satin dress with the big pink bow in the back. She didn’t have banana curls in her brown hair, it was instead naturally curly and ran all down her back all the way to that big pink bow. I think that was my first pang of female jealousy. She was a slight girl with a light dusting of freckles and I had wild red hair and suddenly I could feel the rolls of fat underneath my strawberry frosting dress. When she looked at me, I smiled. I said “Do you want to be friends?”. She just turned to her mother and whispered “fat”.
My mama never had my picture done again.
When I was a fat teenager, I was still popular. I had lots of friends and people didn’t pick on me like in the movies. I made sure to be available to my friends for whatever they needed. I kept lip gloss and extra money in my purse and extra pencils and pens in my locker alongside my diet pills and my gum and my empty candy wrappers. I smoked cigarettes when it was cool. I drove them all wherever they wanted to go. I snuck out of the house in the middle of the night. I debased myself and made them laugh. But they were friends. They weren’t laughing at me, they were laughing with me.
In my junior year I got a boyfriend. His name was Evan and he was fat too. Everyone thought we were the perfect couple. Evan liked to pinch my double chin and share diet tips with me. After 3 months of being a couple he forced himself on me in his parent’s den one afternoon when we were skipping school. I ran home with bare feet and called my best friend Patty. When I told her what happened she told me she was glad I got laid. She said I should go to the drug store and get a test just in case.
I did. When I tested three weeks later it was negative.
I went to prom with Evan.
My mama decided to practice tough love with me. She began to install pad locks on the pantry doors and wrote down everything I ate. She took me to the fat doctor and he put me a strict diet. My mama told me, “Fat girls don’t get husbands.” She told me, “If you don’t lose weight, you’ll die.”
I stopped eating.
When I was fat young adult I grew to hate women. I hated my mother the most of all. I hated them for using me and for not standing up for me when I needed them most. I hated women because I was one and I hated ME. I went on crash diets, I drank away the pain, I dated men who hated me.
I abused myself.
Now, I’m still a fat adult. I’ve gone to therapy, I’ve had surgery, I’ve gone to therapy again. I’ve lost over 120 pounds and on the outside, I’m not a fat girl at all. On the outside, I’m one of them. I’m a skinny girl. Inside though, there she is. The fat girl still lives there and I know I need to make peace with her.
These days I have friends who are women. Some, like me, are fat girls. Some are ugly girls, some are nerdy girls, some have buck teeth or thick glasses or big feet. Some are beautiful and have never, ever been a fat girl. I am learning to live with myself, with help from these women. I hope someday to finally look in the mirror and just say:
“There I am. Just me.”
Personal account submitted by a Jane Doe in Birmingham, Alabama, written with cooperation by Mellissa Ybarra.
I have always been fat.
When I was a chunky toddler people would tell my mom how cute I was and she had my picture taken at the fancy photo studios in the department stores. She took endless pictures of my cute dimpled ass as I raced across the living room. She filmed me eating cake. She rewarded me with candy for good deeds.
When I was a fat child people began to tell my mother I would become obese soon if she didn’t do something. She would pat my hand when people were thoughtless. She would buy me ice cream sundays to help me to feel better. When I was 7 she took me to Sears to have my picture done in a pink dress that looked like a dollop of strawberry icing with my red hair all done up in banana curls like Nelly from "Little House On the Prairie". I remember wearing white patent leather Mary Janes and holding my mama’s hand as we went through the store. I remember thinking I looked exactly like Nelly from "Little House on the Prairie", only better, on account of Nelly being such a wicked child and I had just helped watch my little sister that very morning.
When we got to the studio another mother was in front of us with her own daughter who looked like a real-live princess in her white satin dress with the big pink bow in the back. She didn’t have banana curls in her brown hair, it was instead naturally curly and ran all down her back all the way to that big pink bow. I think that was my first pang of female jealousy. She was a slight girl with a light dusting of freckles and I had wild red hair and suddenly I could feel the rolls of fat underneath my strawberry frosting dress. When she looked at me, I smiled. I said “Do you want to be friends?”. She just turned to her mother and whispered “fat”.
My mama never had my picture done again.
When I was a fat teenager, I was still popular. I had lots of friends and people didn’t pick on me like in the movies. I made sure to be available to my friends for whatever they needed. I kept lip gloss and extra money in my purse and extra pencils and pens in my locker alongside my diet pills and my gum and my empty candy wrappers. I smoked cigarettes when it was cool. I drove them all wherever they wanted to go. I snuck out of the house in the middle of the night. I debased myself and made them laugh. But they were friends. They weren’t laughing at me, they were laughing with me.
In my junior year I got a boyfriend. His name was Evan and he was fat too. Everyone thought we were the perfect couple. Evan liked to pinch my double chin and share diet tips with me. After 3 months of being a couple he forced himself on me in his parent’s den one afternoon when we were skipping school. I ran home with bare feet and called my best friend Patty. When I told her what happened she told me she was glad I got laid. She said I should go to the drug store and get a test just in case.
I did. When I tested three weeks later it was negative.
I went to prom with Evan.
My mama decided to practice tough love with me. She began to install pad locks on the pantry doors and wrote down everything I ate. She took me to the fat doctor and he put me a strict diet. My mama told me, “Fat girls don’t get husbands.” She told me, “If you don’t lose weight, you’ll die.”
I stopped eating.
When I was fat young adult I grew to hate women. I hated my mother the most of all. I hated them for using me and for not standing up for me when I needed them most. I hated women because I was one and I hated ME. I went on crash diets, I drank away the pain, I dated men who hated me.
I abused myself.
Now, I’m still a fat adult. I’ve gone to therapy, I’ve had surgery, I’ve gone to therapy again. I’ve lost over 120 pounds and on the outside, I’m not a fat girl at all. On the outside, I’m one of them. I’m a skinny girl. Inside though, there she is. The fat girl still lives there and I know I need to make peace with her.
These days I have friends who are women. Some, like me, are fat girls. Some are ugly girls, some are nerdy girls, some have buck teeth or thick glasses or big feet. Some are beautiful and have never, ever been a fat girl. I am learning to live with myself, with help from these women. I hope someday to finally look in the mirror and just say:
“There I am. Just me.”
Personal account submitted by a Jane Doe in Birmingham, Alabama, written with cooperation by Mellissa Ybarra.
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