SLE LUPUS:  WAR REPORT [HUNTER BEAR   SEPTEMBER 27, 2005] UPDATED

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]

ADDENDUM:  EXCERPT FROM A POST OF 10/10/05  [HUNTER BEAR]

[Some may recall that, back in the awful Summer of 2003 when I had become
very ill but was still not seeing any doctors of any kind, I had a night
dream in which I met my Disease 'way up in our hills.  He was a man with
snakes all over his head and face [apologies to our rattler buddies] and was
wearing a black suit and a black Stetson.  I drew my revolver, which I
indeed have right here, and shot him dead.]

Locally, I have been doing more walking.  I am pleased that is, coupled with
the end of Prednisone,  fast shedding my weight.  I do have to take things
carefully but now, with much colder weather hereabouts, our snake friends
are mostly in hibernation and Maria and I and Hunter [Shelty] can travel
especially safely through off-trail high grass and brush, rocks and timber.
[Most of the trails, I should add, are merely thin game trails.]  And in our
local Pine Ridge Mall this weekend for the first time for ages, I even felt
human.  Best, H

 

POSITIVE -- GOOD -- AFTERWORD

To Immediate Family in the Hinterland and Friends: [late afternoon,
Thursday, September 29, 2005]

No acknowledgment of this is needed -- but simply FYI.

No word on my blood tests from Dr Jones means Good News -- and there has
been silence.  When considerable blood was taken from me Monday mid-morning,
we did not draw the impression that he expected anything problematic.  I've
sweated out many really "sinister" tests since all this began -- but I stay
pretty cool [more so than some family members] and certainly did on this
round.  Our next appointment will thus be three months hence.  This should
reach all family, even with Mack [and Dawn] in Denver for an editor's
conference. [They took their laptop on the train.]

As Ever, H


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 NaŽshdoŽiŽbaŽiŽ
 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]

FIGHTING [HUNTER BEAR]  10/19/05

NOTE ON THE TIMES:  OCTOBER 19  2005

It's Fall in the West.  Here in the higher altitudes of the Mountain States,
the air is living-crispy during the days and the nights call for our wolf
robe or at least my colorful Pendleton blankets.  Occasional rain and some
snow are slowly bringing deer, elk, and moose down into the somewhat lower
winter ranges -- not far at all above us right here -- accompanied by lions,
bobcats, coyotes, even an occasional wolf. Bears are doing their final
fattening up for their long den-sleep -- which will carry them far
feelings-wise from oncoming cold weather with its cutting winds and
inevitable snow.  But now, the sky can be as blue as turquoise, the mornings
always promising good luck, and the slowly dimming early evenings with their
fading sunlight and faint haze and creeping chill have a strangely appealing
and mystical feel.  The nights can be downright witchy.

For me, it's the Time of my Coming of Age Bear.  And if, from here on out, I
do little more [and I hope I do a great deal], I plan to shoot, respectfully
and ritually so, a Final Big Bear who will join the First --as my special
companions for the eventual journey into the Fog and Deep Canyon, up over
the High Mountains, and Far Beyond.

SLE Lupus is a genetic and highly lethal disease which can affect anyone
although Natives, Chicanos, and Blacks -- as well as younger women -- are
especially vulnerable to it.  Federal research funding for Lupus continues
to fall 'way short.]

[First, a brief report on me et al. and then more on our friend and her use
of new experimental medicine for SLE.]

This is another detailed report from our friend, S., who is undergoing
Rituximab [Rituxin] treatment which, although approved for certain types of
blood cancers, is still in the experimental stage for SLE.  We saw her at a
small meeting eight days ago.  At that point, she was admittedly very tired
[as were all the SLE people.]  But she gave a fine oral summation of her
to-date experiences with the new drug.

For my part, I would not be accurate if I reported that medical things have
been good.  In addition to substantial fatigue and aching joints etc., an
odd rash has been trying to break out on my already partially discolored
legs, my feet are clumsy and occasionally throw off my balance slightly, and
early mornings and middle-of-the-nights are often bleak.  We were able to
spend an hour in the hills a few days ago -- and that, nowadays for me, is
no mean feat.

Extensive blood tests quite recently were OK, my eyes are deemed fine, and
the pseudo diabetes is gone.

As we have ended Prednisone [a steriod] and shifted to other medicines, my
weight is now returning to normal fairly fast. [The winds may blow,
snow may fall, and the world may pall -- but Vanity endures!]

Today, the excellent segment on the dying Bishop afflicted with SLE began
another re-run on ER.  It's very accurate and quite well acted and I always
watch it.  He is/was taking the same medicine that I am currently doing.
Eventually, after completing the ordination of a young priest and, by
example and subtle urging, drawing his young physician, a lapsed Catholic,
back into active Faith, the Bishop quietly and with a smile foregoes further
earthly struggle with SLE and passes into the Spirit World.

I have, as you know, received Last Rites from the Church [a little less than
two years ago.]

Thomas, again as you all know, began Med School at University of Minnesota
in June and is moving along well.  [They have been doing a good deal of
cadaver work.  Our young primary physician here, who knows Thomas [as do
they all since he accompanied me constantly], said -- on that one -- his own
personally recollective, "Poor guy!"]

[Thomas is at the Duluth branch of UM which has a very good Native program.
In a couple of years, he will be transferred to the main campus at
Minneapolis.]

During Thomas' admission process, he was asked by one medical professor
following a brief discussion of my SLE, "What if he [me] decides to forego
further medicine and simply go into the woods to quietly die?"  I did not
press Thomas on what I am quite sure was his as always thoughtful response,
but I did ask him if he was satisfied with it -- and were his examiners.
Thomas responded in the affirmative.

Of course like "S," we fight on.  Most of us do.

From S. -  10/19/05
Tomorrow I'm off again for the Rituximab.  I thought that I would update you
on how this past week has gone.  The fever that I was experiencing when you
saw me last apparently was a reaction to the Rituxan and also due to my not
taking steroids.  The fever was gone the next day. Since then besides the
fatigue, I've generally felt quite good with the exception of two incidents.
On Friday (1 week post treatment) I thought I was well enough to go out to
dinner.  I was wrong.  Within a half hour of arriving at the restaurant my
body became so weak that I couldn't lift my water glass!  I then briefly
"passed out" in my chair.  This was followed by a few hours of trembling,
muscle pain and weakness. The Dr said that this also was a reaction to the
drug and my coming off the IV steroids.  Yesterday I was running a quick
errand and suddenly didn't feel well. I almost passed out again but I
avoided it by quickly sitting down on the floor.  Driving home wasn't easy.
I had to pull over a few times due to a horrible pain in my head.  Because
of these dizzy spells, I've decided not to drive myself this weekend.  My
husband will be driving out with me again.  I will let you know how this
next dose is tolerated.  Apparently only 40 percent of patients experience a
reaction during the second dose as opposed to the 80 percent that have
reactions during the first.  Overall I feel that this treatment hasn't added
a significant amount of discomfort.  So in my opinion, if it works (which we
should know by late November) it is worth pursuing.
As I was driving home yesterday I noticed the amazing shades of yellow and
red dotting the hills and lining the streets.  I hope you have the time to
enjoy this beautiful autumn season.  Have a wonderful weekend.
S.

-------------------------------------------------------------------------------------------------------

That is a discouraging report, Hunter, what can I say? How easy for any of
us to say "good luck" without realizing bleakness in the middle of the night is
the worst time for bleakness.

And only those of us who have experienced "fatigue" know quite what you
mean. I don't know, but there have been times when I just feel so weak I might
think it  was old age. (Which, of course, it is). Most of the time, I don't feel this
way, but fatigue, the inability to do the things we always did, comes at us like an
enemy  out of the darkness, which rest does not seem to heal.

So good luck, knowing the grave limits of those words.

David [McReynolds]  10/20/05

-------------------------------------------------------------------------------------------------------------

Thanks, David, and I am certainly not hanging anything up.  Good luck at the
Convention: the nature of the interaction is such [to put it mildly] that I
much doubt that anything or anyone in the American Sociological Association
could ever adequately dissect or comprehend it.  However, you, yourself, are
doing commendably well on that score!  All best, H    10/20/05


 

HUNTER GRAY  [HUNTER BEAR/JOHN R SALTER JR]   Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
www.hunterbear.org
Protected by NaŽshdoŽiŽbaŽiŽ
 and Ohkwari'

I am honored -- humbled -- by the 2005 Elder Recognition Award of Wordcraft
Circle of Native Writers and Storytellers. This particular, rarely issued
honor is one of several awards voted by the Caucus [board] of this
organization of writers, storytellers, film makers, and journalists.
http://www.hunterbear.org/elder_recognition_award_for_2005.htm   Regularly
updated.

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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