[Marxism] SLE LUPUS: WAR REPORT

["Hunter Gray" <hunterbadbear@xxxxxxxxxxxxx>]

>From Hunter Bear,  Early evening of September 27, 2005  [Cool/cold weather
in Eastern Idaho]

I'm not going to consistently take up lots of time dwelling on my war with
Systemic Lupus -- but, for family and friends and others interested, I am
certainly game to provide relevant information and insight. Unless something
unusual occurs, this will be all from me on this for some time.

Any type of Lupus is quite dangerous, Systemic Lupus [SLE] is definitely so,
and my version of SLE is an especially virulent one.  It was difficult to
diagnose. It attacked my major organs: liver, kidneys, lungs, heart and
blood and vascular system, joints, skin, feet. It has been accompanied by
almost lethal collateral factors -- e.g., profound cardiac arrest on two
occasions [in the context of acute Lupus anemia] while under anesthesia when
medics were involved in giving me a non-productive diagnostic colonoscopy.
Then there was a deep [and as initially and briefly seen, irreversible] coma
induced by a weird psuedo-diabetic condition where my blood sugar count
jumped to almost a thousand. [Walking somehow on my own power into the
doctor's office, I then collapsed.] And there was more indeed. All of this
led several medical professionals and friends and some family to doubt that
I could make it through the winter of 2003-2004.  But, although there is
much hostile SLE turf on all sides of me, I am learning the landmarks and
trails and, of course, I am a very, very tough thug.

[Lupus is genetic.  Natives and other "minorities" are especially vulnerable
to it -- as are younger women. But it can strike anyone.]

It is obvious in retrospect that I had a moderate version of SLE back in
very early 1966.  Avoiding medics, I kept going and suppressed that over
several weeks and, while there were a few odd flare-ups of Whatever things
in the decades to come, I kept right on doing all of the things -- teaching,
social justice organizing and activism -- that I deemed worthwhile. [I
should add that, between 1988 and the summer of 2003, I took not even one
aspirin.]  In early October 2002, Thomas took a color photo of me sitting on
our couch right here.  Although we didn't notice it at that time, a
subsequent and recent inspection of it indicates, clearly and explicitly, a
classic SLE red, upper chest rash. [After we noticed that, we posted the
print on our website for a couple of weeks, and notified people
accordingly.]  Just before the time of the photo, October 2002, I had been
hiking several miles regularly each day for years in the rough wild hill
country immediately above our home.  But in mid-September, 2002, I expanded
my traveling turf to six miles daily round-trip, in extremely rough, ridgey,
steep-trail and precipice-type country, and did that regularly each day in
the pre-dawn darkness.

In February 2003, I began to occasionally notice the rash but paid no
attention to it and continued my regimen of very rugged-country hiking.  In
late April and early May, 2003, Eldri and I and the Rash junketed by Jeep to
Chicago where I was the special Founder's Day speaker on social justice
organizing [and also conducted a workshop on Native challenges as well] --
under the aegis of the Ethical Humanist Society of Greater Chicago [Ethical
Culture.]  On the way home, I drove straight through from the Fargo area to
Pocatello in one fell swoop: 21 hours -- and the latter portion involved
hours of intricate mountain driving on dark, narrow roads.  The full trip
totaled 3700 miles in nine states and I had no problem doing it.

And then, in early July, 2003, the SLE Sky fell on me -- hard and
pervasively.  I avoided any doctors until  very early September.  Then,
nearly dying several times, I was hospitalized on three occasions, had cat
scans, dozens of X-Rays, a bone marrow test, countless blood tests, much
more.  After that, we settled down to just plain [and generally house-bound]
fighting -- day-by-day efforts to simply survive.  Eventually I was able to
take comparatively limited hikes up into rough country and drive short
distances down into town for groceries.

My feet had grown from Size 12 in 1988 to Size 15 in 1999. In 2004, they
went to Size 16.  And they may now be reaching toward Size 17.  Lowa
Mountain Boots will be able to declare a dividend on this.

And we may now have come to a point where my natural optimism is higher than
it's ever been since this Malevolent Specter openly grabbed and sought to
drain away my very life.
----------------------------------------------------
Yesterday, September 26, we spent a long time with my primary physician who
had entered my situation immediately after SLE was conclusively diagnosed in
late October 2003. We knew this would be a major juncture.  First thing in
the morning, Josie drove Eldri and me since Thomas and Mimie are at Duluth,
Minnesota where Thomas is now very well launched in the Med School at
University of Minnesota. [Among other things, it has a fine program for
Native students.]  Our doc gave me a very thorough checkover and found
nothing especially amiss outwardly, although I have been occasionally very
tired and weak and sometimes wobbly in the knees and legs.  The skin on my
lower legs has become dark brown -- possibly related to limited
circulation -- and we have replaced my traditional short socks and their
strong elastic with long and essentially non-binding socks.

My feet, once stiff as boards, now have a very slowly increasing life.

We have been slowly reducing my major anti-SLE drug, Prednisone, [which was
once as high as 80 mgs per day] and substituting 400 mgs of Plaquenil in its
stead.  The Prednisone, a steroid, was down to 2.5  when we ended it totally
today, after our Monday medical visit.  Pred had caused me to gain much
weight, contract pseudo-diabetes, encouraged higher blood pressure, and it
can threaten -- rot -- bone structure.  As we have faded it out, the
diabetes has disappeared and blood pressure and blood sugar have returned to
normal. I have thus far lost 20 pounds in three months and am shooting to
lose 25 more.

My face is essentially Me again and I can once more wear my favorite
shirt -- a bluish, moderately heavy Western " brushpopper"  with Native-type
designs. It's my lucky shirt and I wore it to this medical appointment.
[Thomas will remember it from the long ago name change day -- when,
together, we picked up my district court order -- and Mack will recall it
from the in-color Bismarck Trib front-page photo.]  I plan to lose at least
25 more pounds.] In addition to ending Pred, the doctor has agreed we can
now end a few other things as well -- the high blood pressure stuff, ACTONEL
[bone safe-guard and strengthener].  In addition to the Plaquenil, I
continue to take a special protective medicine for kidneys, some other
things, and many vitamins.

At the conclusion of all of this, much blood indeed was taken for various
tests -- with especial emphasis on my internal SLE situation [and also to
formally confirm the passing of the pseudo-diabetes.]  That was Monday
mid-morning and we have heard nothing adverse so far.  [If tests are
essentially OK, we generally do not hear from our medic.  We did not draw
the impression that he expected anything adverse.]

I had a second major eye exam a month ago and everything is perfectly
normal.  No ill effects from the diabetes and the Plaquenil.

We hear now and then of possible new Lupus medicines -- and, if so, they
would be the first in over forty years.  But it's all rather mirage-like and
we count on nothing.  Something new is being tested [or readied for that] by
a very select number of specially approved rheumatologists around the
country.  There is apparently only one such physician in Idaho, in far away
Boise, and those SLE victims so selected for testing must also be OK'd by
the drug companies.  One person we know, from B.C., expects Canada to
approve this new medicine long before FDA in the 'States does so -- and she
may eventually go there or far abroad.  In the meantime, the Feds still
appropriate relatively little monies for meaningful and on-going Lupus
research.

The concept of bodily death does not throw me -- and I don't think it ever
has. But while we can take nothing for granted with the Wolf Disease [how
unfair to the wolves themselves, whom I like much], and while many things
are still badly askew and things can still be quite grim on our end, I am
now convinced that I am going to Live on for a good spell. [The support of
my great family and many fine friends, my super loyal one half Bobcat cat,
and our other cats and our dogs has been absolutely critical.]  The
challenge now is -- as always -- to Live with increasing brightness and
social justice productiveness.  I have now met [and try to assist in various
ways] a number of very nice and good "Lupus people" some of whom [certainly
not all] seem drained and forever wan, with their Spark gone.

That will never happen to me.

Yours, Hunter Gray [Hunter Bear]

HUNTER GRAY  [HUNTER BEAR/JOHN R SALTER JR]   Mi'kmaq /St. Francis
 Abenaki/St. Regis Mohawk
In the mountains of Eastern Idaho
 www.hunterbear.org
Protected by Na´shdo´i´ba´i´
 and Ohkwari'

Check out this significant honor: my 2005 Elder Recognition Award from
Wordcraft Circle of Native Writers and Story Tellers
http://www.hunterbear.org/elder_recognition_award_for_2005.htm

In our Gray Hole, the ghosts often dance in the junipers and sage, on the
game trails, in the tributary canyons with the thick red maples, and on the
high windy ridges -- and they dance from within the very essence of our own
inner being. They do this especially when the bright night moon shines down
on the clean white snow that covers the valley and its surroundings.  Then
it is as bright as day -- but in an always soft and mysterious and
remembering way. [Hunter Bear]










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