October 28, 2005

• a taste of what it would be like to have a life

  If I’d had a choice, I would have stayed home today.  It is
  snowing and the roads are slick.  The snow we got last week
  disappeared after a couple of days of rain.  Then the skies
  cleared and temperatures were down in the single digits Fahrenheit for
  a few days.  Today’s snow is piling up fast on the frozen ground.

  I had been running low on meds, the asthma pills and inhalers that keep
  me breathing.  A trip to the neighborhood health clinic was
  unavoidable, and I’d had this appointment for a while.  I don’t
  like going there.  With my haywire immune system, I try to avoid
  crowds, hospitals, and other likely sources of infection.  I’m not
  germ-phobic, just cautious.

  Besides that, I don’t enjoy the interactions with people who treat me
  as if I don’t know more about my own body than they do.  Through
  web searches and email newsletters, I work at keeping up with the
  latest advances in rheumatology, neurobioelectrochemistry, and other
  fields of specialization related to my condition or just of interest to
  me.  The P.A.s at the clinic were trained in general medicine and
  don’t have time to update or supplement the education they received a
  decade or more ago.  They’re too busy seeing patients.  They
  have their routines and their procedures and a patient who talks back
  and **horrors** even sometimes rejects their conclusions and refuses
  their prescriptions is so bizarre they can’t believe I’m real.

  It’s not just the clinic, though.  I don’t go out anywhere more
  often than I must, really.  My volunteer job was eliminated over a
  month ago, ending that routine of town trips every two weeks. 
  I’ve been sticking close to home since then.

  The idea of just going somewhere to get away from here and break the
  monotony doesn’t have any appeal for me any more.  Years ago I did
  that frequently, but the “chronic fatigue” part of this syndrome I live
  with has put an end to it.  A walk around the neighborhood today
  would mean tomorrow would be a near-total loss, spent just on
  recovering from today’s walk.  A drive to town and a day of
  shopping and mild activity can require as much as three days of
  recovery time.  I know I will pay tomorrow for what I did today,
  so while I was out there I made the most of it.

  As soon as I got off the rough gravel side road onto the asphalt this
  morning, my wheels lost traction.  It was slicker than snot on a
  doorknob.  I kept reminding myself to slow down gradually before I
  reached the turnoff onto the Talkeetna Spur Road so I wouldn’t go
  skidding past the intersection.  No worries:  just before I
  got to Goose Creek, I came up behind an oversize rig with pilot
  vehicles fore and aft, hauling a medium-sized building along at 35
  MPH.  Behind it were a double-trailer rig and a tour bus.

  Tour bus??  This time of year??  Must be either cut-rate
  off-season American tourists, or more likely it’s Japanese aurora
  hunters.  If it really was the latter, they’re cursing this
  overcast and snow.  Our little convoy collected a few cars behind
  me as we proceeded at a stately pace, and my turn onto the spur road
  was uneventful.

  I was spared the ordeal of listening to all the “you poor thing”
  blather from my usual provider at the clinic.  She has had twins
  and is taking a couple of years off.  The downside of that is that
  I have to break in a new one.  She just happened to be the medical
  director of the clinic.

  We had a spirited discussion of inflammation, NSAIDs, type1
  cyclooxygenase inhibitors, leaky-gut syndrome, the proton pump, and
  related matters.  During the course of it, three times I told her
  that I wanted some relatively safe NSAIDs (less side-effects than
  ibuprofen) to lessen the inflammation from my ME, and all three times
  she apparently misunderstood and came back with some bullshit about
  “pain.”  I told her that I have a lot of everyday discomfort, that
  I have an effective mental technique for dealing with it, but that I
  haven’t found an equivalent drug-free means to relieve the fever, and
  the fever makes the sensorimotor deficits much worse.  Finally, I
  simplified it for her:  NSAIDs = less stumbling and fumbling +
  less brain fog.

  I don’t think I ever got through to her.  I could see that my
  vocabulary impressed her, but she had a mental block against accepting
  any of this stuff I’ve been learning online.  She patiently
  explained her rationale for wanting me to take proton pump inhibitors
  along with the COX inhibitors, and I finally gave up trying to tell her
  anything different.  I just firmly refused the prescription for
  proton pump inhibitors.  Just to make sure I’d gotten it right,
  when I got home I went online and found several recent medical journal
  articles that blew her argument full of holes.

  In the aftermath of our little discussion, she took some time to read
  my file.  Apparently my previous provider had made some notes
  about my peculiar preferences.  She said, “I notice from your file
  that you prefer not to have mammograms and pap smears.”  Then she
  asked me about my family history and some other stuff that’s in the
  file.  I guess she felt uncomfortable letting me sit there quietly
  while she read.  She said, “I suppose you prefer not to get a flu
  shot.”  I confirmed her supposition. 

  I surprised her, though, when she hesitantly suggested some blood work
  to check up on my kidney and thyroid function.   I told her
  that giving a little blood was no problem, and I was willing to fast
  for eight hours beforehand, but I wouldn’t guarantee that in such a
  hypoglycemic state I wouldn’t go postal on them.  She didn’t seem
  to see the humor in that.  I wonder how we’ll all do next Tuesday
  morning when I go up there without breakfast to let them take my blood.

  I stopped at the hardware store on the way back from the clinic and
  bought a tarp for the woodpile.  The pile we got from Tim last
  spring has had two more cords added to it this week and another one
  will be here tomorrow.  The old tarps won’t cover all of it now.

  I went to Sunshine Restaurant and ordered an enchilada platter for
  lunch.  With a generous appetizer of chips and salsa, I filled up
  on less than half of the food I was served and brought the rest of it
  home for later.  At the cafe, I saw a few people I knew and
  briefly felt like a social animal for a change.

  Since it was just a short side-trip on my way home, I stopped at
  Charley’s cabin for a visit.  I skidded past his road and had to
  go the long way around.  While he was telling me about his
  inability to contact any of his family on the Texas gulf coast since
  the hurricanes, another neighbor, Cindy, stopped in.  While the
  three of us were visiting, another neighbor, Donny, came in long enough
  to determine that none of us was willing or able to do what he
  wanted.  Then he continued on his quest and Charley, Cindy and I
  caught each other up on current local events for a while.

  When I got home, Doug had just gotten up and the fire in the woodstove
  was almost out.  It hasn’t yet recovered and it’s a little chilly
  in here.  Doug has gone out to split more wood and bring it
  in.  I’m going to go blow on the fire and try to encourage some
  BTUs.  Seeya.
  

  • 9:22 pm
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