More on the 100 days of healing ...

Yes, I have been feeling better.  A lot better, in fact.  So much better that sometimes I forget how bad off I was not so long ago.  And sometimes I forget that I still have a lot of healing to do, and a lot of sleep debt that I have to make up for.  And sometimes I forget that I still need to be gentle with myself.

Lucky for me, I have someone who will be gentle for me, and makes sure I take care of myself.

But seriously, while it is really, really nice to be able to sleep through the night again, and to have the majority of my brain power back again, I have to admit, I'm tired of always being tired.  I want to get my energy back.  I want to be able to start working out again, and maybe start training for a 5K like I used to do.  I want to be able to lose all this weight I've gained in the last year.

Right now it is 10:15pm on a Saturday night, and I'm ready to go to bed.

I feel like I'm 90 years old.

CPAP on a plane ...

Okay, so maybe that title is a little misleading.  I didn't actually use it on the plane.  But it was my first time taking it on a trip that required air travel.  Check off another "first" for me.

I had to go to Florida on business, so it was actually a double "first", in that I was also sleeping in a hotel room alone for the first time since getting the CPAP.  If you will recall, I have in recent years had a really hard time sleeping well when away on business.  So this was actually a really good test.

But first ... the travel part.

Since this was a short trip (2 days), I figured I'd just take everything as carry on luggage, and see if I had any trouble with 3 items - overnight bag with laptop, CPAP, and purse.  The answer was an overwhelming NO.  Went through security without a problem.  Okay, no problem with the CPAP, that is (though my learned lesson is not to put stacks of paper such as books, notepads or the like in my carry on luggage).  I actually had someone ahead of me in line ask about it, and whether he had to take it out of the case.  Apparently, they are becoming so common, and commonly travelled with, that removing from the case is not required any more.  Yay!  A little cumbersome to have to deal with yet another item when getting through an airport, not to mention stowing and retrieving carry on baggage.  But not horrible.

Second part of the test was how well I slept in the hotel.  This one passed with flying colors!  I almost feel guilty about how well I slept without someone making noise on the other side of the bed.  I also have realized that I need to replace my pillow at home to something softer.  I have the contoured pillows that are really good for supporting my neck, but not so good with the CPAP face mask.  So softer pillows it is!

Overall, though, I was pretty amazed at how well I slept, and how I wasn't waking up every 40 minutes or so checking the clock and taking 10-15 minutes to fall back asleep.  Only took me about 24 hours to adjust to the new time zone, which was really nice.  Unfortunately, I had a lot of work to do after the meetings, so I had to stay up late and get that done, which gave me less total sleep than I really wanted/needed.  Same thing with the late flight home Thursday followed by an obscenely early call Friday morning.  But that wasn't so much an issue with bad sleep as simply insufficient sleep.

All in all, it was really quite wonderful to know that I can do long distance travel requiring air travel, especially for business, again and not have it wreaking havoc on me physically.

Woo hoo!!!!

Oh, and the mojitos and Cuban food were AMAZING!

One month follow up visit

Yes, this is another "catch up" post.  I decided to break them up, since the two topics are pretty different.  Plus, I really wanted to close that last post with my happy engagement news.  I'm still in a happy glowing mood over that one.

I did, however, have my one month follow up appointment with Dr. Chenn, the sleep specialist.  It went well.  Very well, actually.  Okay, except for the part where the medical assistant had me get on the scale.  I never like that part, and this time it did sting more than a bit.  But everything else was actually quite good.

1) Blood pressure is back down to normal range (126/80)

2) API score (number of times I stop breathing or have extremely labored breathing per hour during sleep) with the CPAP is 0.9.  For reference, anything under 5 is considered "non apneic" and anything under 1 is very good.

3) My average pressure setting - in a variable setting of 8 to 12 - averaged around 9.  So I'm actually not needing all that much pressure to keep my breathing steady.

4) My compliance with using the device is well within what the insurance company's guidelines for conversion from rental to purchase.

5) I feel so much better!  I really feel like I'm getting restorative sleep now.  Not necessarily enough of it most of the time, but that is something I will just need to work on as part of my 100 days of healing.

The best part of all of that, in my opinion, was that he felt like I was doing well enough with my therapy that I don't need monthly visits any more, and recommended coming back in a year for my next follow up.  Woo hoo!

I also really appreciated the fact that he did mention weight loss, but in a non-judgmental or preachy kind of way.  It was more of a "this is something that would be good for you in terms of apnea and other things" but we both agreed that this was something to approach gradually after I started feeling like I was over the initial sleep deprivation issues.

Then the interesting part happened.  I met with the DME person about reordering supplies via mail order.  And she recommended that I come in to have my CPAP pressure re-evaluated if I gained or lost more than 15-20 pounds.  Keep in mind that she had not been privy to my earlier conversation with the doctor. Nor was she aware that I had been very strongly contemplating following some friends along on a weight loss challenge to lose 10% body weight in a 6 month period.  As ashamed as I am to admit it, a 10% weight loss would indeed push me over that 20 pound threshold.

So, I made a decision right there that I was going to do that challenge (though I won't join in on the "bet" portion and put money in it) and make a concerted effort to lose 10% of my body weight by December 1st.  And I had the receptionist schedule my follow-up appointment reminder for 6 months from now, rather than one year.

I have explained the situation and my desire to Brian, and he is totally on board with it.  We are going to start right after the Memorial Day holiday with eating cleaner, fresher foods (greatly minimizing if not eliminating the processed stuff and dining out a lot less).  I will also be tracking food and working harder at portion control.  I will also be starting a more structured exercise routine.  Even if I can't do much at first, I will do what I can and gradually build up my stamina and ability.  I don't expect us to be 100% perfect (for example, I don't intend to even try to "diet" when in Mexico, or when we are on our overnight cruise), but we are going to give this a very strong effort.

Yay for both of us!

Oh, and here's a random picture of my engagement ring.  Just because it makes me smile.  Tee hee!

Camping with a CPAP

Okay, so it's been a while since my last blog post.  This is actually a good thing, I think, because it means I've been busy with other stuff and thinking about other things, and not feeling the need to do so much "writing as therapy".  So ... yay!!!

 

Last weekend I took my first camping trip with the CPAP machine.  I was a bit nervous about the whole thing, wondering whether it would be a problem, and whether it would all work as well it had been working at home since acquiring the Vader Mask.  I purchased a $300 CPAP battery from an on-line source, and even paid the extra for expedited shipping to make sure I got it before we left.  I made sure I had all the parts together, and charged it up the night before we started our very long drive.

Night #1 was an "on the road" night, and we stayed in a motel in Crescent City.  Everything went beautifully, and I think I got the best night's sleep I've had in a very, very long time.  According to FitBit, I had over 7 hours of restful sleep.  It was glorious.

Night #2 ... yeah ... not so much ...

After a long day of driving, setting up the tent in the rain, and a rather incomplete dinner (Explanation: We ended up getting invited to join my parents at their friends' rental house for dinner.  No one thought to tell me that the main course was pasta, none of which I can eat, until we were actually sitting down.  So I ate some salad, and cheese, and a little meat sauce, and way too much wine for the "meal" I had consumed.  Yeah ... not good.), I was pretty wiped out and ready to go to bed.

And then it happened.  I set up the CPAP and the battery, went to plug in the DC connector, and ...

It. Didn't. Fit.

Three nights we are planning to be there, sleeping out in the wild, and I have no way to access the machine that has finally allowed me to get a decent night's sleep and feel like a human being again.

Fuck.  Fuckety fuckety fuck fuck FUCK!

Not being in the best mental/emotional state to start with, I started to cry.  Unfortunately, Brian was equally tired and frustrated (having also had to deal with setting up in the rain, as well as having our air mattress pump crap out on us midway through inflating our mattress so that he had to finish blowing it up manually, and was also suffering from some digestive issues from drinking too much cream in his coffees throughout the day), and therefore his response was really not what I needed at the time.

Commence major meltdown.

About a half an hour or so later, Brian was able to pry me out of the car and back into the tent, where I climbed into bed with him, and spent the next 2 hours listening to the rain on my tent and Brian's snoring, and trying in vain to fall asleep (even though I knew it would be crappy, non-restorative sleep).  But nope, it wasn't happening.  Not at all, not even close. Meanwhile, I'm getting colder, and the wet air is making me feel damp and miserable, and the bottom sheet isn't staying on the bed, so I'm there laying awake on a cold plastic air mattress feeling more and more panicked at the thought of having to do this for three whole days. I contemplated going across the road to where my parents were, and asking them if there was some way I could use the power in their trailer to operate my CPAP machine, but I really didn't want to wake them up for something I wasn't even sure they could help with.  So I just lay there and suffered.

At one point, I gave up and got out of bed and went to sit in my car.  I couldn't even do internet surfing on my phone, since I had no connectivity whatsoever.  I did write a long diatribe in the "Notes" section of my iPhone about how much I hated my life at that moment.  I will not publish said rant.  Suffice it to say, I got quite a bit of the frustration out.  I tried turning on the heater in the car, but realized about 30 seconds later that the rest of the camp didn't need to be kept awake by my car running.  I also missed the raccoons rampaging through the camp, which is just as well.  When the raccoons came, Brian also came out to bring me back in to the tent again.  He thought maybe there was a bear in camp.  I was really cold at this point, and figured it was better to be in the bed with his body heat, even if I couldn't sleep.  I think I may have dozed fitfully for a few minutes at a time until the sun came up, and Brian took off to go use the restroom.

He must have run into my dad in the men's bathroom, or coming back from it, because I heard them talking, and shortly thereafter Brian was coming in to the tent with an extension cord.  Yep, we had access to 110 power in the campsite the whole time.

D'oh!

So I plugged in, and hooked myself up, and went back to sleep for another 3 hours or so.  Huzzah!  Not my best feeling morning ever, but I was at least functional.  Was even better after another hour's worth of nap that afternoon.

Needless to say, the next two nights were much better.  It also stopped raining, and I fixed the bottom sheet so that it would stay on the bed.

So, yeah.  Camping with a CPAP.  Not so bad, actually.  I still have the battery, and am getting the right cord this time.  I'm still planning to go to a couple camping and SCA events this summer, so I don't think the $300 was a complete waste, though I did have to pay again for the second cord, and obviously the expedited shipping fee was completely unnecessary  Oh well.

Oh yeah, and at the end of the weekend, on the last night?  Brian got down on one knee in front of my parents and 215 other people and proposed.  Right here, at this very site. It was pretty epic.

Looking forward to more camping and fun adventures with my fiancée this summer.  And yes, we are totally going back to Gualala next year.  And every year after that ... :)

Just call me Lady Vader!

Yep, that's me!

So ... after almost two weeks of struggling to adjust to the nasal pillow and chin strap combination, I finally gave up.  The whole contraption was uncomfortable, hurt my nose, kept slipping out of place, and just basically wasn't working.  Also, as much as I hate to admit it for many reasons, the truth is, I just couldn't keep my mouth shut during sleep.  Rendering any type of nasal-only mask pretty much useless.

Hence ... the Vader Mask.

Alas, it doesn't do cool sound effects, nor does it drop my voice by two octaves.  Now THAT would be pretty awesome.  But no.  What it does seem to be doing, however, is allowing me to get sufficient airflow during the night to stop having apnea/hypopnea events.  Which means I'm starting to get some decent sleep.

HALLELUJAH!!!!!

I've only had it for a few days, but so far I'm much happier.  Despite my initial misgivings about comfort, I'm finding the full face mask to be a lot more comfortable than the nasal pillows.  Only problem is the drool.  Yes, I drool in my sleep.  A lot, actually.  And having my drool pool up in my mask each night and gather on the corners of my mouth instead of soaking into the pillowcase like I'm used to is kind of disgusting.  But it is a small price to pay, and I'm more than willing to pay it.

Grossed out yet?

But seriously, I am definitely starting to notice a difference.  I'm far from being "better", but I feel an improvement.  Granted, I haven't been able to take full advantage of any ability to sleep more due to my schedule change, having started rehearsals for Urinetown this past week.  So I'm still tired.  But it's better.  I'm getting a little of my mental clarity back.  I have more energy and stamina.  On Wednesday, I took a 3.5 mile hike, and it felt great!  I'm dreaming again, in much longer stretches.  All good stuff.

I'm actually amazingly grateful that the improvements started when they did, considering that I've started rehearsing another show.  I don't think I could have made it through another rehearsal period feeling the way I did.  I barely made it through Man of La Mancha.  Truth be told, I feel really bad about how that ended up.  I know I didn't do as good a job as I wanted to on that show, nor did I enjoy it as much as I could have.  My poor castmates and the production team probably had no idea what was going on with me (okay, a few did), or why I was a sobbing emotional wreck throughout the process, or why I would have to go into the dressing room to put my head down on the makeup counter and "rest" during intermission instead of socializing with the rest of the cast.  I hope some day I can make it up to all of them.

I'm also still extremely sensitive to noise while sleeping.  Even with the 5mg of Ambien that I take every night.  This makes me very sad.  However, I'm still hoping that as my sleep improves, that part will go away.  Because I can't wear earplugs, especially not with the CPAP mask.  It physically hurts my ears.  And noise-cancelling headphones are not comfortable for sleeping in.  Not to mention I'd be afraid of sleeping through my morning alarm.  So I will keep hoping on that one.  But tonight will probably be another solo slumber night for me, because last night was good for snuggles, but not so good for sleep.  I hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, hate, a million times hate having to choose between the two of them.

So for now, I must continue to be patient, and just let the healing happen.  That is admittedly hard for me.  Once I get the sleep problem under control, I really need to start on a structured weight loss and exercise program.  I am not at all happy with myself in that regard.  However, I am also wise enough to know that it will be more beneficial to me to take one challenge on at a time.  Not to say I can't work on increasing my exercise in little ways, and making smarter food choices.  I can and I will.  But the bigger effort needs to wait a little longer.

I will learn patience if it kills me ...