Thanks to all of you. Feel free to move this somewhere else if need be.
Here's the thing -- setting rant tags on
-- I've weathered through most everything with a wry sense of humor: lupus, cancer, diabetes, gall bladder, thyroid shutdown and this very unusual thing where I had a second degree heart block, passed out and went into convulsions when I SWALLOWED. That last I could do a good stand up routine on :-) Oh, oh, Oh yeah, and then there was the defective pacemaker that had to be replaced. So I'm a pretty resilient gal and smile more than I gripe (or at least laugh when I gripe). It has never occurred to me to ask , "why me?" Honestly, I realize on some level that if my good luck was as good as my bad luck is bad, I'd have hit the big lottery jackpot by now, but I figure it all just means I don't generally sweat the small stuff. . . until now.
For some reason, this CPAP thing just makes me just plain ANGRY. I do have some history of claustrophobia, I probably have some issues with authority and the feeling of having to push against air to exhale makes me feel like I'm getting rolled by a wave and about to drown (in fact that is the dream my head made up as I awoke gasping and pulling the mask off). I've always told folks that if I'm about to kick the bucket, for heaven's sake don't shut me in a hermetically sealed room! Put me in the middle of a hay field where I can breathe good, fresh air with my last breath. I generally sleep with a window open at the head of my bed even when the temps drop into single digits. I dread stuffy, recycled air. I take trains when I can (even over night) so I don't have to deal with panic inducing airplane cabin air. Then, back when I was in grad school and going through a divorce and lupus and .... well I learned to manage stress through breathing exercises... measuring the inhale and the exhale, deep and long into sleep.
So when the least invasive device (nasal pillows) goes on for the few hours I've been able to manage, I need to fight all my usual sleep time habits. I'm suddenly dreading going to bed at night. If I get myself tired enough, I can get to sleep during the 45 minute ramp time (Thanks to reading here I figured out what that was about, since the guy who delivered it just set it to auto and left), but unfortunately that means I often screw up and fall asleep on the couch instead of in bed with my machine. I put in calls to the "CPAP clinic" three weeks in a row looking for help (the doc had told me to call them) and was ignored. Meanwhile the DME was calling warning me about compliance. When the clinic lady finally called after my Endocrinologist sent a note to her, all she said was that she couldn't help me if I wasn't compliant. I told her the doc had told me to call if I was having problems being compliant. I pointed out that if someone had helped me by explaining and changing the Ramp setting sooner, I would probably be closer to being compliant by now so maybe they can help me in some other ways. She finally, grudgingly made an appointment for me (will be on Wednesday). Since then, I've discovered the EPR, but since that isn't part of the patient settings I want to let them do that. I suppose that since it is set at 2 it still can be improved slightly.
Anyway, the few times I've been able to get close to a compliant night (missed it by five lousy minutes!) sleepyhead is telling me that my AHI was a whopping 0.28 (and yes that decimal is in the right place). Which brings me to another thing I obsess about when trying to sleep with the dang thing: The only reason I was sent for the sleep study was that my pacemaker reported irregularities. However since that time it has been determined that that was all artifact. Yes, I've been struggling with daytime sleepiness, but we also discovered that my thyroid was coming up short and sleepiness has always been the first sign that the thyroid is slipping.
So, if you've been kind and sweet and patient enough to read this far, I need to get control of these anger issues and rebellion and ... well if I'm ever going to be compliant. I just haven't figured out what I need to punch to get it out of my system. -- rant tags off --
Thanks if you got this far.