52 Card Project 2021: Week 19: Morpheus

[pegkerr]

I hope you all appreciate that in the service of art and this project, I have the courage to post one of the most unflattering pictures of me ever taken.

I received my CPAP machine this week, which I have dubbed "Morpheus," i.e., the putative God of Sleep. This week's card is based on Sir William Ernest Reynolds-Stephens' painting The Arms of Morpheus:



My vision for this card was not quite realized: I wanted to overlay a picture of me wearing the CPAP mask over the maiden in the painting. Problems: these cards are all in portrait orientation, whereas the painting is landscape, so I could only use a portion. I don't live with anyone who could take a full-length picture of me, and I don't have a tripod with a time-release button, so I couldn't take a full-length shot myself (and my arm isn't long enough to take it as a selfie). After much experimenting and cursing, I managed to snap this (as I said, immensely unflattering) picture of me, just a headshot selfie, which meant I could only replace the head, not the entire body. Ah, well, it is what it is.

In the foreground, you see the machine itself, as well as the mask I wear with it. In my first night's report, I learned that I have an average of 8 to 9 "events" an hour throughout the night. An "event" is when I stop breathing for at least 10 seconds. Given that sleep apnea tends to be inherited, and given that my dad died in his sleep, my reaction to this is "Yikes." The machine is a complication in my life, and I feel ugly AF wearing it, but I am more certain than ever that I made the right decision to start down this road.

I am also excessively annoyed, all over again, by the American medical system. I went into the machine equipment company's office to get the machine and I had to sign a financial contract for the rental. I asked what my monthly cost would be, and the tech told me, "That is governed under a contract between the machine equipment company and your insurer which is proprietary information and I cannot tell you that. You will find out the amount when you receive your first bill."

Note the ridiculousness of requiring me to sign a financial contract without having any idea of what I am going to be charged. [Edited to add: this is an overstatement, sorry. He could tell me the flat rate without insurance. But what my insurance company will charge me, he couldn't tell me.]

Getting used to the machine is going okay, but it is challenging. Air is continually blown into my nostrils. Breathing in is easy, but breathing out is more of an effort. After a while, you start to feel as if you have an imbalance of air going in versus air going out, but if you make the mistake of opening your mouth to try to draw in a deeper breath, the pressure feels like it increases tenfold. You just have to keep your mouth shut and try to relax and let the machine do its thing.

The score and the condescendingly chipper message at the top of the card is from the online app I use to get the report every day.

Morpheus



Click here to read about the 52 card project and see the year's gallery.

Comments

[naomikritzer]

The price you're paying is PROPRIETARY INFORMATION? Oh my sweet aunt sally.

This is something that congress could fix, and I'd encourage you to send your specific story (PROPRIETARY. INFORMATION. TO KNOW WHAT YOU'LL BE CHARGED) to Ilhan, Tina, and Amy.

[pegkerr]

Well, he could tell me 'it will be x amount [the flat retail cost] or less,' but the exact amount, no, he wouldn't/couldn't tell me, because yeah, what the equipment company negotiates with the insurer varies from insurer to insurer. So it varies from patient to patient, depending on their insurance.

It's still infuriating.

[jenett]

The whole CPAP thing is so bizarre on a logistical level. My supplier is surprisingly great, and they were ab le to tell me what the likely costs were going to be (between getting my prescription and calling me to set up the appointment.) But wow, is it opaque.

I love my CPAP (though I have not named mine, weirdly, because I usually name tech.) If you find the exhale remains hard, there are ways to adjust that (basically, how much the pressure drops automatically when it detects an exhale is a user adjustable setting, but if you tell your tech, they can suggest what to try.)

I also found putting a fuzzy cover on the tube and on the straps makes me feel a lot more friendly about it. (Well, that, and being able to not be totally exhausted.)

I love the card.

[aome]

I feel like I missed something! What lead you to be diagnosed with the need for a CPAP? Ugh, the whole thing with insurance and the financial contract is ridiculous. *hugs you* How's Naomi recovering from surgery?

[pegkerr]

I have been sleeping terribly for years and finally, in desperation, I got a referral and did a home sleep study. The study confirmed sleep apnea, which makes sense considering my family history.

Naomi's surgery went well, and she is home recovering--still on medication but on the mend. Thanks for asking! In other happy news, her new book Chaos on Catnet is out now and doing well.

[princessofgeeks]

my husband's cpap changed his life for the better. so glad you are getting answers.

[pameladean]

You don't look ugly, Peg. You just look like a person with a piece of technology on her head. It's the same head.

Since you don't like the way it does look, however, full points for adhering to the truth of your project.

I hope you and the technology adjust to one another and you sleep better.

Pl

[dreamshark]

Please call your Sleep Center or whatever your clinic calls it to get your machine adjusted correctly. It should not be blowing back into your face so hard that you feel like you cannot exhale. This equipment takes some tinkering with to get it working right and it is their job to do this for you.

I have very mixed feelings about the CPAP industry. The equipment clearly helps a lot of people, but I suspect it is over-prescribed. It may be exactly what you need and you should certainly pursue it, but bear in mind that some pretty sketchy actors are making a lot of money off this and take everything they tell you with a grain of salt.

The secret pricing and indecipherable reordering process for the equipment is pretty hair raising, and sets off all my bullshit detectors. Somewhere in the packet of information they gave you is probably a "price list" for each a la carte component of that sleep machine. The prices listed there are ludicrously inflated. If you scrutinize every bill and invoice that you get you can eventually figure out what the insurance company is actually paying and how much of that cost is passed on to you (20-25% in my case). The list price is actually about 5 times the actual cost to the insurance company. For instance, the machine itself is listed at $3500 but Health Partners was actually charged $800 and I paid about $200. A 2-pack of disposable filters is listed at $18, but the actual cost was $3, and I was charged about $.80. I'm not sure who is making out like bandits from this discrepancy and lack of transparency, but I'm pretty sure somebody is.

You will also find that reordering components is extremely awkward and confusing. They really really want you to put the whole process on automatic and let them sell you new items at the minimal legal interval whether you need them or not. But since most of the time you DON'T need to replace the stuff that often I refused to do that, which left me in a swamp of confusion over the difference between headgear, mask, and frame or whether I needed "cushions" or "pillows."

And that MyAir report you've been getting is mostly useless. It comes from the manufacturer, which is primarily interested in making sure that you use the equipment as much as possible. So they track every minute of usage but are pretty vague on whether it is actually reducing your apnea episodes or improving your sleep in any way. It will continue to be annoyingly condescending ("Great job, Peg! You win a gold star sticker!") If you actually care about the data you can request a smart card to insert into the machine which you can read yourself with easily available free software. You probably don't care about that much detail, but if you do I can tell you how to do it. It's actually pretty interesting if you are into medical minutiae.

But what really matters is whether the machine improves your sleep experience more than it degrades it. For me, the balance was really close, but in the end I decided it was worth it. For some people, it is apparently a much more obvious improvement. Here's hoping you are one of those. But if you aren't, don't be discouraged if it takes 3 months or more to get used to the machine and figure out how to get the most out of it for your needs.

[lydamorehouse]

I don't know why, but I LOVE this one.