Discouraged

[Janknitz]

The American Sleep Apnea Association has a free program that provides CPAP and supplies for people in need. I'm not 100% sure it's running right now because of COVID, but you can contact them to ask: https://www.sleepapnea.org/community/cp ... plication/ And you can even request particular machines and masks. In addition, if you want to try a particular mask, many of us have unused extras we are willing to share. That would permit you to bypass all the BS from the "nurse" (was it really a nurse? Nurses cannot write prescriptions. Nurse practitioners can, though--there is a difference).

I think you could learn to be comfortable with CPAP if you took a careful approach and weren't under the gun to meet anybody's compliance requirements, which seem to add another layer of stress for you since you already experience having one machine taken away for non-compliance. Avoiding that pressure may help.

And you might start with a mask before you even get a machine. Practicing putting it on, just breathing room air when you are not trying to sleep with it. You can use your MBSR techniques or listen to calming music (you have the MBSR skills, you can use them again even if they don't work sometimes. Don't assume they are no good "anymore", they are still there for you when you try them). Start with wearing a mask 5 minutes and gradually increase the time. Do you have any masks from your previous attempt or have an idea what kind of mask you'd like to try if not? We might be able to help you get your mask of choice--somebody might have one to share.

I had a terrible time getting used to masks at first. I was terribly claustrophobic, which I learned was due--in part--to untreated sleep apnea. Think about the fact that when you have untreated apnea you are spending a significant part of each night bathed in stress hormones as your body tries to get you breathing. Those stress hormones carry over into your daytime life too. In my case, I had panic attacks driving over bridges or in the far left lane of freeways when there is a wall or barrier next to the lane. It's still there, but much better now that my apnea is treated.

I would panic and literally rip off the mask and throw it across the room. So I made up some self-imposed rules:
1. I would not go back to sleep without the mask (When you are doing the 5 minutes plus acclimation above before you even have a machine, your rule could be that you will put the mask back on to make it for 5 or more minutes instead of sleeping with it).
2. If possible, I would take deep breaths and count to 10 slowly before removing the mask. If I managed to get to 10, I'd try to count to 10 again before removing the mask. Then only removing the mask if I absolutely had to. Often, the panic would subside so I didn't have to remove the mask. Sometimes I had to repeat this several times per night.
3. I made reasonable goals. At first, it was to sleep for 1 hour (in your case it could be wear the mask for 5 minutes), then 2, then 4, then 6, and finally sleep all night. And that first night I slept through it was like I woke up in heaven. Calm, relaxed, feeling great. It made me want to have more nights like that. I didn't remember ever feeling that refreshed waking up since I was a baby in the crib (I have distinct memories of waking slowly and calmly in a crib when I was little).
4. I recognized that there would be good nights and terrible nights, and another goal was to start having more good nights than bad nights. (In your case, it could be to have more successful practice sessions than not).

Sometimes it's going to SUCK. That's reality. It's HARD. But so is living the way you have been. So it's time to choose your hard. The key is not to stop because there are times when it's hard, or you'll never give yourself a chance to feel better. Persistence is important. You CAN overcome the hard parts. Take it 1 night at a time, 1 hour, 1 minute if you have to. From what you've said you CAN do the work. MBSR itself takes persistence and practice and you completed that course. You can do this too. You are worth it, give yourself this chance.

[babydinosnoreless]

I am very claustrophobic. I found the masks with the magnet closures work best for me. Everyone is different. After trying many masks, the N-20 was the least awful of the bunch. I wore headgear as a kid and it reminds me very much of that. I can rip it off easily. The pillow masks are even smaller but they hurt my nose.

While in the insurance compliance period I would wear my mask and run my machine while awake and sitting up reading to get all my compliance hours in. Its easier to get used to in the daylight. Once the machine and I made friends in the daylight it was easier to transition to using it while I slept. (Doctor/insurance company doesn't have to know that you are not asleep. All they care about is that you use it 4 hours a day or whatever it is. When I did finally sleep with it I made sure there was a lot of light in the room. My husband whined but I was able to convince him leaving a nightlight on was better than me panicking and having a meltdown in complete darkness. With a nightlight I was able
to make adjustments after a period of time I was able to go back to sleeping in the dark without the massive freakout.
You've got this!

Btw we live in a multigenerational household. My parents lived with us until they passed. Now we live with our adult children. Its not easy but it can be very rewarding and saved all of us during the pandemic. We were not isolated like so many seniors and by splitting expenses we were able to keep a roof over our head, the lights on and food in our fridge. I personally think its worth it. Try not look at it like its a bad thing and instead embrace the fact that family loves you enough to share both the good and the bad.

[Miss Emerita]

I read my medical notes from the visit. Just wow. So many inaccuracies and omissions (particularly of rude things she said). I am wondering about how to deal with this provider if I have to go back. I was thinking about asking my daughter to go with me or putting a recording app on my phone. Then I realized, maybe I don't have to go back. After you got your script, did you have to go back?

Great idea having your daughter go with you.

[onward60]

Do you have to keep going back again and again after that?

Not usually. It all depends on what your medicaid requires. After initial face to face and proof of compliance they don't usually do much after that. Maybe once a year verify that you are still using the machine and depending on what machine you get they might be able to do that without seeing you. New machines now can do the compliance stuff on the internet cloud thing.

Medicaid is state funded insurance so what it requires can vary widely state by state.

Well, that's good news! Last time I got a resmed airsense for her. I'm going to a different place this time because the last one did not know how to fit my mask, which was the first in a long list of problems. I thought the machine would have been fine except it smelled like perfume. Apparently the first machine is a "rental," so not new. Maybe they used a smelly disinfected or maybe somebody had it in a perfume-y house. I ran it for hours but the smell would not got away.