Friday, November 30, 2018

We need to listen to each other.

It's maybe the biggest problem in the world right now, and I'm not understating it at all: we just don't listen.

Yes, I've talked about this many times before, and I'm sure you're weary of the political aspects. So today I'm not going to talk about politics. I'm going to talk about health care.

I have both Eva's and Kathy's permission to publish what I'm about to write.

Eva has a bad knee. To put it mildly. Her problems with her knee include, but are not limited to, a baker's cyst, three different kinds of arthritis, bone chips, and tendon and ligament damage.

Because Eva also has been diagnosed with depression and generalized anxiety, her physical issues are constantly minimized. "It's all in your head," she is told, "or at least most of it is". The connection between depression/anxiety and the physically observable mess that is her knee is far from clear. I mean, her knee is misshapen; the cyst has been the size of a grapefruit at times. Yet a medical doctor apparently can't tell a knee from a brain.

She needs a knee replacement. She won't get one. Not for at least five years. The reason for that is that people are limited in Canada to two knee replacement surgeries on the same knee per lifetime...and a knee replacement lasts fifteen years. Therefore, Eva can't get a replacement until thirty years before the stats say she'll die.

She lives with a shit tonne of pain in her knee. Periodic cortisone shots (also extremely painful) allow her to function. Sort of. But that's all they seem to want to do for her. Grrrrrr.

As my longtime readers know, Eva had bariatric surgery five years ago and lost fairly close to half of herself. We refer to pre-surgery Eva as Eva-squared.
This huge weight loss has gifted her with clappy-slappy skin flaps in a wide variety of places: she's now a one-woman percussion section and I've been known to call her my little caramel bonbon. She wears all but one of those flaps with pride. The one, however....

She wants to have a panniculectomy. This would remove the substantial belly flap she has now, underneath which she is prone to angry and painful rashes.

She won't get one. Not in Canada. It's not that it's not covered, it's that it's not performed. They would perform it, and cover it, if she got her body mass index (BMI) to a certain place. To do that, she'd need to lose another sixty to seventy pounds. That will not, CAN not, happen.

I can hear you now: of course it can happen, if she just buckles down and exercises blah blah blah.

Ahem. LISTEN. Or, I guess, in this case, watch.

When Eva weighed 400 pounds, her lean muscle mass was determined to be 173 pounds. That alone, according to that stupid BMI, is more than a woman of Eva's height is "supposed to" weigh. Explain that.

It's obviously not that high anymore, but between that and her incredibly dense bone structure, her bariatric surgeon has stated with absolute certainty that Eva will never weigh less than 200 pounds. No matter what. But here are doctors, using a fatally flawed and critically debunked formula to tell her she'd need to lose an impossible amount of weight before they'll even look at her. BMI, seriously. You may as well believe in the four humours. Why not look at the patient rather than the formula? Why not listen to the patient's concerns and treat her as an individual?


Kathy, meanwhile, has severe sleep apnea, to the point where she is required to use a CPAP machine. Her usage is monitored and if she fails to comply, she could lose her driver's license.

She went to get that sleep study done because of my nagging. It wasn't her snoring that got me nagging: I started doing it long before I ever even met her. (Eva has sleep apnea as well, albeit not as severe.)  It was about her health: severe sleep apnea dramatically elevates a person's risk of untimely death. Constantly waking most of the way up countless times each night, gasping for oxygen, does not do a heart any favours.

Well, it's been a nightmare. It's been six weeks since she got her CPAP and mask. In that time, she's gone through six masks and two sets of straps, and her pressure was never set properly until just this week.
She pulls that mask off in her sleep almost every night. That's not the part that's interesting to me. The part that's interesting to me is that she reports she feels MUCH more refreshed, awake and alert on nights when that mask only lasts an hour or two, versus nights when she somehow manages to keep it on throughout.
She has been telling me for weeks now that she has never been this tired and sleep deprived since Jade was a newborn. If then. I've controlled in my mind for various things--she was often very tired before she ever had the sleep study, for instance, and I think she sometimes forgets or minimizes that. I'm also aware, and have to remind her frequently, that the true sample size is four nights, not forty two. (If a CPAP is set at the wrong pressure, it's worse than useless.)

But there is no doubt in my mind that Kathy--somehow--sleeps much better without the CPAP than with it. This should not be. If you go online, you'll find testimonial after testimonial about how CPAP has transformed lives. But you'll also find some people -- somewhere between two and seven percent -- who feel the same or worse after months and sometimes years of CPAP therapy.

These people are impossible, according to the medical community. The numbers show the apneas decrease to almost zero with the mask and machine, ergo the patient must feel better. I'm not going to dispute those numbers, nor the positive health affects of reducing/eliminating apneas. I AM going to question what good a healthy patient is if she feels like absolute shit all day, every day.

I don't want to hand Kathy ammunition to discontinue the therapy. She can't, anyway, without draconian consequences. She is trying: night after night she puts that mask on, and she's fiddling with various physical and pharmaceutical accessories in the hope that something, anything, will give her the sleep she needs. But I do wish her doctors would consider that while CPAP is a godsend for most of the may not work as intended on everyone.

My loves are far from alone in this. I know a woman who had heart surgery, was prescribed an extensive pill regimen she was told was absolutely critical to her staying alive -- and within a week she ditched almost all of them because, she said, she'd rather be dead than feel the way those pills made her feel. That was more than a year ago. She's the picture of health.

Another woman friend of mine confounds medical science all the time. I've observed heart rates on her -- both high and low -- that should render her, well, dead. Her skin is hypersensitive: put something on her guaranteed hypoallergenic and she'll break out. Among other things. None of which are explainable. Doctors look at her and ignore all the impossible things.

I can't help but notice the one thing all these people have in common: they're women.

I can't imagine anyone being surprised by that...least of all a woman.

And this is traditionally where the men come rushing in to tell me that they, too, have issues with not being heard. I'm sure they're telling the truth. But the issue with women is systemic. Look here. for instance: study after study confirming things like

  • women are seven times more likely than men to be misdiagnosed and discharged in the middle of a heart attack
  • Seventy percent of chronic pain sufferers are women, yet eighty percent of studies on chronic pain are conducted on males
  • Women who undergo coronary bypass are half as likely as men  to be prescribed painkillers after the procedure
and so on. We are not listening to women, especially when they report their feelings. Why is that?

I believe it's another consequence of toxic masculinity. Males are taught from an early age that the only expressible negative emotion is anger. Crying is for wimps. Pain is for pussies (notice: that's a standard vulgarism for the female genitalia?) When men hear about a woman's pain, they think her weak. When a man expresses his pain, he's breaking a taboo and so it must be an excruciating emergency. 

It's funny, because I know many women living with pain that would lay most men low. And they rarely complain about it, either. Why not? 

Because nobody listens.

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