On Living With the Squid

As some of you who still hang around here know, after my big Medical Event this past fall I was diagnosed with sleep apnea, which means that I stop breathing, for several seconds at a time, many times -- in fact, dozens of times in my case -- every hour that I'm asleep.  My doctor said that this could well have been a factor in my going into respiratory arrest after some routine, "twilight sleep" day surgery.

Occasionally sleep apnea has a neurological basis -- the brain, for whatever reason, is simply misfiring when it comes to sending the message to breathe. Most often, though, it's a function of body mechanics, whether that be enlarged tonsils or, most commonly, excessive weight that can physically obstruct one's windpipe if one is sleeping in a certain position.

Even though I think it's sometimes misunderstood as merely a snoring problem, it's actually a pretty serious condition that brings with it a whole constellation of unhealthiness, from daytime grogginess and cognitive slowness to full-blown depression to metabolic imbalances and hypertension to increased risk of stroke or heart attack.

All of which made my choice to invest in a CPAP machine kind of a no-brainer, even though the thought of going to sleep every night hooked up to this odd contraption made me sad and got me going all Charlie Brown over myself: You blockhead; you can't even breathe like a normal person. It didn't help, either, that the tech who came to the house to fit my machine and run me through its use and maintenance was a dourly melodramatic young thing, a CPAP  user herself, who intimated that if I were careless in any aspect of wearing or caring for my machine, or even if I carelessly indulged in a CPAP-less naptime on the sofa, I'd die, pretty much. And my first night lying there in the dark, feeling like an unholy hybrid of Darth Vader and a vacuum cleaner, was not fun. I couldn't get comfortable; as I tossed and turned the hose would get twisted and would pull my mask, breaking the seal and causing a distressing hiss that kept both Fellow Traveler and myself up much of the night. I later described it as trying to sleep with a large squid attached to my face. Trying to speak with the pressure on is uncomfortable, to say the least; turning the pressure off before loosening the mask can feel like having the life sucked right out of you.

And -- I'm not a vain person, but no matter how hard the medical supply catalog models try, you cannot rock this look. Unless you're one of the more disturbed individuals who write classified ads in the Village Voice personals section, a CPAP mask is not something that you really want to visually inflict upon your mate as the last image of you before s/he goes to sleep. It just isn't.

Well, this sucks, in many and various ways, I thought in the morning, dutifully washing my headgear with Ivory soap and setting it out on its little towel on the bathroom sink; a new daily ritual to follow for the foreseeable future.

But the next night, something interesting happened; after repeatedly tweaking the fit of my face mask, I finally got it to where I could sleep on my side, as I am wont to do, without pulling the thing away from my nose. And -- I got a good night's sleep. I woke up with my head spinning from all those good, complex dreams that come with some decent REM action, and an urge to work out on the Wii  Fit and write and inventory our antiques and play Words with Friends and clean the house and go snowshoeing -- all at once. Oxygen is amazing stuff when you've been depriving yourself of it for years. In the days that followed I became a whirlwind of energy; while that's peaked somewhat, it's still nice to wake up feeling, as someone once put it, Good morning, God rather than Good God -- morning. I also started thinking more clearly, which can be a bad as well as a good thing -- along with feeling like I'm getting my old sharpness of mind back, I also keep coming upon evidence of a mental fog that, while certainly being amplified by having a seizure, had been there to a lesser degree for a much longer time. Half-done projects that I had completely forgotten about, just lying here and there...confusing strata of personal clutter in my favorite caching spots...lots of stuff that makes me think Omigod -- did I really do this? Did I really not do that? What is this? Omigod...Omigod...

So I love this machine that I  hate, because it's made the difference between experiencing my world in one-dimensional sepia and in 3-D Technicolor.

And I hate this machine that I love, because as this article points out about Type 2 diabetes and the medical industry that's sprung up around it, CPAPs are evidence of a culture in which we've largely (pardon the pun) given up the idea that we can wean ourselves from unhealthy food and habits; we've consigned ourselves to simply creating technology and pharmaceuticals that help us survive a little longer and more comfortably while we still remain dependent on ways of food production and leisure and marketing -- think Walter Wink's powers and principalities-- that damage us. I hate the idea that over the years I've imbibed the poison cultural Kool-Aid and damaged my body to the point where I need a device like this.

But I cling to a stubborn hope that it doesn't have to be like this forever, either for me personally or for great swaths of society. My DO, henceforth to be referred to as Dr. Awesome (as opposed to my previous physician, Dr. Drive-By), is a complementary-medicine practitioner -- improbably located just 45 minutes away from my small town -- who is absolutely convinced that chronic conditions like hypertension and diabetes are reversible in many people with the right balance of lifestyle guidance, motivation and judicious use of medical technology. She isn't mean or condescending, but she holds me accountable, and I like that. And she suspects that if I lose enough weight I may well be able to eventually wean myself off my CPAP. At the same time, she told me that my CPAP is a very useful tool that is going to gradually lower my blood pressure, amp up my metabolism and do a lot of other good things that will in turn make it easier for me to work on my other health goals. I wish everyone had a Dr. Awesome.

So at this moment I am loving the squid more than hating it. And last night I actually got a very sleepy Fellow Traveler laughing by donning my headgear, turning on the machine and intoning, "Luke...I am your father..."

Self-Care, New and Alt.

So here's what's happening in my ongoing campaign to get well-er with the help of a sympathetic holistic DO:

After running me through some labwork, Doc says that I have some issues with my adrenal glands -- specifically, my fight-or-flight hormones are going full-tilt boogie from the moment I get up in the morning until late at night, wreaking havoc with everything from my blood pressure to my insulin production to my lady issues. "The saber-toothed tiger is after you all day," she said. She told me that if I don't do something to change this state of affairs, I run a very good risk of developing diabetes.

First she changed my blood pressure medicine from a calcium-channel blocker that was making me lightheaded to the point of almost passing out in the mornings to a diuretic and a magnesium supplement. She prescribed me fish oil for blood pressure as well as cholesterol control. She directed me to an herbal supplement for evening out my blood sugar during the day, and another for adrenal health. And because my Vitamin D level was so alarmingly low, she told me to take that as well as maximize my intake through prudent sun exposure and dietary sources.

All of which sounds like a whole lot o' pills. But Doc wants to eventually get me to the point of not needing this stuff. Which brings us to the lifestyle-change section of this program.

Doc is not a fan of high-protein, low-carb diets because they tend to be hard on the kidneys. She is steering me toward the Mediterranean diet model -- big on fresh vegetables, fruits and legume; a moderate amount of whole, preferably minimally processed grains; healthy fats; a glass of wine on occasion; and quite modest helpings of meat, mostly fish or chicken.

She also, while happy that I'm doing a lot of gardening and other weight-bearing kinds of daily tasks, wants me to spend 30 minutes a day on aerobic activities like walking; and she wants me to do the aerobics in the early evening because of the way my metabolism works. This to me is counterintuitive; I prefer walking in the morning; and it's bumping our dinnertime ahead to the old farmer's suppertimes I grew up with. But I'm compromising by doing some easygoing handweight resistance exercise in the morning, between getting the coffee going and feeding Mollie. Doc also told me to schedule relaxation, in any way that works for me, into my day the way I'd schedule any other daily to-do.

I'm only maybe three weeks into this routine. But so far I've noticed that I'm sleeping better, while having more energy during the day. I'm no longer experiencing near-fainting spells. The walking is,among other things, improving my posture -- and giving me some quality quiet time in the pleasant subdivision behind our house. And both FT and I think my moods are on a more even keel.

Now, I know much of this advice is simple common sense. But it's helpful to have a doctor -- and a partner -- who are willing to be my accountability partners in this process.

I Hate RA

Rheumatoid arthritis, that is.

Fellow Traveler has it. Once upon a time, when she suffered from ulcerative colitis (the two disorders are interrelated), she was so debilitated from RA that she had to use a walker. She was shot up, and puffed up, on steroids to try and manage the pain. It took an ileostomy, and several joint replacements, to halt the progress of the disease and help her regain her mobility. She's more agile than I am these days.

But RA still lurks in her system. It will lay low for weeks at a time, then surface with a vengeance -- one day it may be in her fingers; a couple of weeks later it will hit her shoulder; a month later and she'll wake up with RA in her foot.

For the past few days FT has been in intense pain from RA in her jaw, which is so inflamed that it's swollen and hard; she looks like someone with the mumps, and describes the pain as something akin to a migraine crossed with a toothache. It's bad enough to keep her from talking, or eating solid food. It hurts enough to be fatiguing, to send her into sleep as a kind of natural anesthetic; as I type she's taking an afternoon nap with a microwaveable beanbag next to her aching head. (I'm trying to avoid the irony that this pain really began to flare up after our church's healing liturgy.)

It's a very helpless feeling to watch someone you love try to navigate with this type of affliction, and to wake up every morning wondering if it will be better, or worse, or migrate to some other joint.

FT's doctor has told her that surgery is an option, but a dangerous one because of the proximity of the jaw to the brain; and the operation obviously requires a very long recuperation. It also doesn't have a very encouraging success rate over the long term.

So we are trying to assemble the best toolkit we can of alternative options. FT has gotten out of the habit of wearing her mouthguard, which was molded by her dentist with her particular problem in mind and which she is supposed to use most of the day, not just at nighttime. So she has resolved to bite the bullet -- or the plastic -- and start wearing it again, day and night. I have also been doing some reading up on alt.med ways of managing RA, and she is open to some of the therapies that have so far passed the quack test in mainstream medical research; stuff like aromatherapeutic hot compresses, more omega-3 fish oils in our diet, more green tea and blackcurrant oil as a dietary supplement.

We are also going to work our way around medically credible diet recommendations that pose a problem for FT because of her ostomy, like the emphasis on fruits and vegetables in RA diets...fruit and vegetable juices, for instance, rather than the fruits and vegetables themselves. (I had previously found "anti-inflammatory" diet plans rather limiting, especially for someone who already has diet restrictions for other reasons, and was cheered to see that a lot of these diets are bunkum -- there is, for instance, no evidence of a connection between nightshade-family plants and increased RA symptomatology.)

One more speed bump on our road of life. But we are not going to give up on lifestyle-change solutions to this problem. We hate you, RA, and we are going to mess with you until you crawl back into dormancy.