Admitting Defeat... So I Can Get Some Sleep

I've had several requests for an APAP/apnea update, which is understandable, since I know I left you guys on a pretty depressing note last month. (Sorry 'bout that.)

I didn't have much new to report, though; it was the same struggle every night, trying to get any sleep at all with that blasted mask on. I kept at it, though! I even brought it with me for overnight trips. I'd put it on as soon as I went to bed, knowing it'd be another 2-3 hours before I could fall asleep, but figuring that was time to further acclimate to the machine.

I tried both a full-face and a nasal pillow style mask, eventually deciding the nose one was less painful. It made my nostrils and sides of my face so dry and itchy I eventually started to peel, so I had to slather on enough moisturizer every night to feel perpetually slimy.

I was dry because my APAP didn't have a humidifier. We were told that would be more comfortable, though, so John was doing his darndest to get me one. This led to a 6-week "Who's On First?" routine with our insurance company, sleep clinic, and equipment provider. Two of those 3 never answered their phones, and didn't know they even HAD fax machines. When the doctor sent over my prescription (because, believe it or not, you need a separate script just for the water tank), she called the humidifier a "humidifier tank." So the provider sent us only the tank, not the whole humidifier.

It was hilarious, in a really aggravating kind of way.

Eventually John gave up on phones and faxes and started just showing up in person to the equipment provider office. This worked great: after only 6 weeks of effort, I had a humidifier!

... that didn't fit my machine.

For further hilarity, 2 days ago we received a rather eye-watering bill from the equipment provider, because our insurance had declared - wait for it - that they had no record of our ever being members.

Someday I'm going to write a poem to the modern health care system. It will consist entirely of four-letter-words.

Anyway, the reason time was such an issue was that you're only given a 2 month "trial period" with an APAP or CPAP machine. If, at the end of that period, you're not using it for at least 4 hours every night, the insurance company will charge you for it. And there's no cheating; the CPAP itself monitors your usage, and tells all.

At my one month appointment, I was only hitting the required numbers about 75% of the time - and almost all of that time I was awake. I wasn't actually sleeping with the mask on much at all. It took me 2-3 hours to doze off each night, only to wake - in misery- between 5 minutes and 2 hours later. Sometimes I'd try again, but most nights I ripped the thing off.

Since I wasn't lasting long with the machine, I got a bed wedge pillow to make it more comfortable sleeping sitting up. (This can help keep the airway open with apnea.)

To keep from sliding DOWN the bed wedge, I found it helped to stick a pillow under my knees.

Then I started watching cartoons on my phone in bed, to give myself more time with the mask on, and maybe to help lull me to sleep.

So picture this: Me, propped up on a giant bed wedge & pillow, with another pillow under my knees, sheets on top, and a third bed pillow on my stomach, propping up my phone. On my head I'm wearing a nasal mask with two head straps and a long flexible tube snaking over the side of the bed. Over all that I'm wearing headphones.

I was like some slouchy Borg queen, ensconced in her bed linen nest.

Poor John couldn't even get near me, and since I felt like I had to wear the mask as much as I could while I was awake, he'd often come to bed to find me already propped up and plugged in, which took a severe toll on snugglin' time.

The doctor asked me if I wanted to quit at my one-month check-in, but since I STILL didn't have the humidifier at that point, I told her I wanted to keep trying. In those four weeks I'd only managed a single half-night of sleep with the mask on, so there was no way to know yet if it was helping or not. "Maybe a humidifier is the missing key," I told her. She agreed, and wrote yet another humidifier prescription for our reading-comprehension-challenged equipment provider.

The moment of truth came at just over the week 6 mark, when John strode victoriously through the front door, bearing the fruit of all his labor: a second humidifier - and this time one that actually fit my machine.

That night we read all the instructions, washed it, filled it with distilled water, and plugged me in. This is it, I thought. Finally, I'm going to be comfortable, and last the whole night with this mask! Best sleep of my life, HERE I COME.

Now, I should mention that a CPAP machine doesn't feel good; it's just good for you. Like exercise, or letting your boss win an argument. In fact, the only positive physical sensation of a CPAP is the cool air it sends on your nose/face. It feels very fresh, and helps make up for the strong plastic smell.


Attach a humidifier, though, and that cool, plastic-smelling air is replaced by muggy, dank, plastic-smelling air. You know how you breathe on your hands to warm them up in the winter?  Imagine someone doing that into a tube... and then you take that tube... and stick it up your nose.

What I'm saying is, the humidifier made it so, so much worse.

The air was hot, thick, and hard to breathe - and I say this as a Floridian who wades through pea-soup level humidity on a daily basis. Plus the contrast of having cool air on every other part of my face completely futzed with my brain, so I found myself trying to breath through my mouth.

Funny thing about trying to breath through your mouth with an APAP nasal mask on: you can't. The airway constricts in the back of your throat, closing it off and making you choke a little and potentially panic a lot, if you're, say, half-asleep and not thinking straight.

I lasted a few hours with the humidifier.

The next day I gave up.

Yes, I know it's bad. I know I'm letting myself down, and maybe even some of you. All I can say is, I really did try.

On the plus side, my doctor tells me my oxygen levels don't drop while I'm asleep, meaning I'm not in any danger of brain damage or heart issues. That's why she asked me if I wanted to quit; my apnea isn't so severe that I have to use this machine. I can try other things.

So last week I packed up the APAP and all its wires and tubing, and chucked the bed wedge into the closet. I try to sleep on my side. I've slept a little better, though of course not great. I'm just back to square one.

Looking to the positives, I feel like my Hashimoto's treatment is working, and I'm told that can help significantly with sleep apnea. I get my most recent test results tomorrow, which will tell us how far I've come and what adjustments my meds need. Right now my body temperature is a roller coaster, but since I've always been cold, I can tell the heat spikes mean something is happening. Plus some days I actually *want* to walk on the treadmill desk, and I feel more alert. So while I don't think I'm there yet, I'm still pretty encouraged.
More good news: the last few weeks I've doubled my dose of probiotics, and - knock on wood - I've only had the barest hint of free-floating panic since. I went on the Seuss ride again at Universal last week, and since John and I were with a friend, I was distracted and happy and didn't feel a SINGLE twinge of anxiety. Not one! I... I can't tell you guys how relieved and happy that makes me. I want to suck up all that calm and solidness and normality and just roll around in it for ever and ever. And then go on the E.T. ride. Dangit. (Still working up to that... but someday?)

After my doctor's appointment tomorrow, John and I get to do something new: we're having dinner in Cinderella's castle with two dear friends. (WOOT!) John's never been, and I haven't seen it since I was little! So, yeah, excited. And after the past 6 weeks, I think we're both ready to celebrate a little. Even the failures.



PS - Ah, how could I forget Lily? You'd rather hear about her, anyway, right? ;)

Lily's post radiation checkup was great: she's officially gone from hyperthyroid to hypothyroid, which was the intention, and should improve over the coming months. She's put on a whole pound, now weighing just over 10, and is filling out beautifully. That bad problem spot on her back is only this week starting to grow hair again, though; it's been a long, frustrating journey getting it to heal. Fingers crossed that was our last over-grooming hurdle, and it's smooth, purr-filled sailing from here!