I am full of unmitigated rage!

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

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About

Middle-aged, life-long Texan with a substantial chip on her shoulder.

Posted in health, surgery

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