Air.
The breath of life.
We are immersed in its invisible currents, and it travels
throughout our bodies to bring life to each cell, our lungs infusing our blood
with that precious O, and our blood cells in organs along the route suck
it up, this life-giving element without which they, and we, will die.
Air.
How easy it is to take for granted, to forget about its ubiquitous
and necessary presence in each moment we know ourselves to exist.
| Thanks so much to Douglas A. Sirois for permission to use this beautiful image, one that captures my feeling about the sacredness of air, especially given my increasing lack of the element in which we are immersed and dead without! The artist has many spiritual and fantasy illustrations I love! www.dougsirois.com douglas.sirois@verizon.net http://dsiroisillustration. http://www.imdb.com/name/ |
So. Why is it that my
cells are not getting enough air? That
is the medical question of the day, the hour, the year. In fact, dyspnea—shortness of breath—began noticeably
for me over Christmas and New Year’s while traveling to Europe and
Switzerland. Actually, it was more like
utter exhaustion than shortness of breath—the shortness of breath came because
I was trying to get that precious air to the muscles that threatened to give
out beneath me.
Air didn’t seem so invisible to me that day. Of course, I couldn’t see it, but I could
visualize its little superhero blobs traveling newly oxygenated from my lungs
through the arteries, greeted with joy and celebration by the thirsty cells waiting
in muscle and tendon and bone and organ, the parts of us that need that bloody,
airy drink to keep going.
David Abrams captures the essence of air (pardon the
redundancy) in so much of his writing, like this lovely paragraph:
[W]ind is moodiness personified, altering on a whim, recklessly transgressing the boundaries between places, between beings, between inner and outer worlds. The unruly poltergeist of our collective mental climate, wind, after all, is the ancient and ever-present source of the words spirit and psyche. It is the sacred ruach of the ancient Hebrews (the invisible “rushing-spirit” that lends its life to the visible world); it is the Latin anima, the soulful wind that animates all breathing beings (all animals); it is the Navajo Nilch’i (the Holy Wind from whence all earthly entities draw their awareness).
Abrams convinced me to fall in love with air in his first book, The Spell of the Sensuous,
but not having enough of it is turning that love into stalking, sort of. I like thinking of the air when a fresh breeze
makes me appreciate its softness as it lifts my hair and brushes it against my
face. I don’t like thinking of the air
so much when I’m worried about getting enough of it.
Of course, tests abound. First tests suggest heart failure. Cardiologist says heart appears to be slowing down at times but wants to
hear what my new pulmonologist has to say before deciding what to do, if
anything.
My new pulmonologist, who gives me a new little twinge of
hope that the mystery will be solved—how unusual with my smorgasbord of weird
diseases—ordered a sleep study I submitted to last week. This would be my fourth sleep study in two or
so years, though one was merely having an oximeter clipped on my finger
recording to a small device I had to keep it wired to. I don’t even know what the results of that
one were, but the others were for sleep apnea with the whole nine yards—put you
to bed at 10:30 p.m. after hooking you up to about a thousand wires, and while
you toss and turn and try to sleep your brain waves and breath and heart rate
and all that good stuff is transmitted to the computer, and in the morning,
voila!, a one-night picture of one’s autonomous system while asleep.
And mine? The first
sleep apnea tests came back with a mild case, about 5 apneas per hour. However, I’d contend I never got into a
really good sleep that night, and the tests showed I never went into REM
sleep. Apneas happen in REM sleep,
though they’re more common in other types.
This new sleep lab had a very comfortable bed, and I was
more tired than usual after a week that had me getting less sleep than usual
due to a couple of commitments. I knew I
was sleeping well when I woke through the night, and in that state my hourly
average was 17 apneas.
From mild to moderate.
Still, that doesn’t explain dyspnea on a flight of stairs, does it?
Well, my theory for a while has been something’s going on
with my brain stem, which includes the pons which control respiration. I have other symptoms of brain stem
dysfunction, from whatever cause I have no idea, though I’m putting my money on
Chiari I as I have a lifetime of weird health issues that are correlated with
that abnormality. [June 2014 update: I have been diagnosed with neuromuscular disease, likely myotonic dystrophy, that causes hypersomnolence and respiratory weakness--my two big symptoms--and will see yet another Hopkins specialist at it neuromuscular clinic in July 2014. I wasn't totally off, however; the respiratory symptoms mimic problems from brainstem dysfunction, but the actual mechanism for this weakness has not yet been fully determined other than a general consensus that it originates in the brain.]
So, the first test two years ago led to a second test, another hospital night wired up like a Christmas tree, this
time wearing a CPAP machine, to see whether the mechanic air pressure forced down my throat helped me sleep without my
breath's stopping, and it did.
And here’s where my gripe starts to come in.
No. 1. Why was a second
test ordered if the insurance company would turn down a CPAP machine for apnea
as mild as 5 times per hour? Was that
not a waste of money for all concerned, other than those who profited from it?
No. 2. The second
test showed that the CPAP did help me
sleep, and probably more than they knew because I slept better that night, but
the insurance company in all its wisdom decided it was not clear enough that
the CPAP would help my overall symptoms (hypersomnolence, basically), so having my own machine was
DENIED.
Fast forward two years, and now I can’t walk up a flight of
stairs without being utterly out of breath and half in a faint. I’m sleeping as much or more than ever even
after starting on Ritalin for my lifelong ADHD and concomitant sleep
problems. And, by the way, ADHD, along
with central sleep apnea, hypersomnolence, reversed circadian rhythm, etc.,
etc., all the problems I’ve been having all this time, are associated with
Chiari I and other brain stem disorders.
Okay, so what now?
I just have to wait a month and a half until the sleep
clinic has I've switched to has another opening so I can again be tested in a CPAP machine to
determine whether it will help. I
mentioned the results when I went through that test two years ago, but they said that had been too long
ago. It’s true, pressures need to be
adjusted.
Still, it rather annoys me (and I’m being mellow when I say
that—actually it royally pisses me off, but I don’t have enough energy in my
oxygen-deprived body to show it) that the insurance company forced me to see
more doctors, have more tests, and, worst of all, suffer the wear and tear to
my body of two additional years of sub-oxygenation to my tissues and organs
because of one of their stupid arbitrary rules. Not to mention the cost of all those exploratory tests and doctors' visits--penny wise and pound foolish, these insurance companies--no wonder health care costs are so out of control.
As I’ve said in other episodes of Down the Rabbit Hole, we
patients count very little in the accounting of our insurance companies. Let’s hope Obamacare gets through the growing
pains and then breaks the monopolies of these companies, one baby step forward
in dismantling the yoke of the 1 percent’s hoarding our money overseas and
within their own class of society—a quite un-American way to live.
In the meantime, I can’t help but wonder how much damage has
been done over the past two years, which is when my polycythemia was first
diagnosed. No cause has been found to
date, but my money this time is on a low level of oxygen in my system. Though my arterial oxygenation has been
low-normal with oximetry, I’ve read in several reliable sources that having
polycythemia may make those results falsely high, meaning the oxygen saturation within my blood and tissues is possibly even lower than the already-low levels oximetry has recorded.
Ah, well. More
specialists, more tests, more money spent … maybe then we’ll figure it out.
Or maybe I’ll just throw in the towel, do a solo Thelma and
Louise. At some point I wonder if I’m
worth all the money being spent on me. But then I remember that everyone has the right to medical care, and I’m
very fortunate that I have insurance at all, even though the companies are ripping all
of us off I certainly don’t mind paying
for care, but the hoops they have me going through and the unnecessary expense
and inconvenience and personal detriment their decisions have cost all of us—those
things need to stop.
I hope I live long enough to see it!
Okay, melodramatic.
Like I said, feeling mellow tonight ….
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