SUNLIGHT IN OUR SMALL CORNER: FIGHTING LUPUS PREDATOR [HUNTER BEAR  AUGUST 30 2007]  WITH MANY COMMENTS  -- UPDATED WITH, THINGS AND THINKING  [HUNTER BEAR --  SEPTEMBER 29 2007]

Friends:

Things are difficult enough for everyone -- everywhere -- that I have not
been inclined for some time to share my personal medical challenges with an
especially difficult version of Systemic Lupus [SLE] with anyone beyond our
immediate family. However, I can report some good news -- and so I am simply
now doing this quick little broadside.

We have been through a "kidney scare" -- but all has turned out to be OK. A
routine blood test awhile back detected a possibly significant problem that
might -- might -- be a harbinger of serious kidney developments with
secondary implications that could bring a return of diabetes [this malady
had left when we ended the steroid drug Prednisone.] Lupus had initially
attacked a number of my vital organs, including kidneys, and the medics have
watched that sector about like a fire lookout studies the terrain these days
in forest fire-ridden Idaho. When this possible problem was abruptly
detected several weeks ago, there was concern. My primary medic, a young
Mormon [no objections to my coffee consumption], whose medical conservatism
I appreciate, asked me several questions about over-the-counter painkillers
that I might be taking. When he learned that I had been taking Motrin [
ibuprofen ], which ironically had been suggested several years ago by other
docs], he wondered if this might be the root of the problem. He was not at
all sure since SLE is wildly unpredictable. So we stopped that immediately
and waited a month to see what happened. [And there was always the chance
that, in any case, irreversible kidney damage might have occurred.] So we
marked time while I continued to eat well and drink pure mountain water,
continued my daily pre-dawn walks [160 so far] in heavy Lowa mountain boots.
A couple of days ago, more blood was taken, the tests were expedited, and
the results show that my kidneys have returned to normalcy. The next routine
blood tests will not be for six months. In the meantime, there was one of my
periodic comprehensive eye exams by another doctor designed to ensure that
my primary Lupus med, Plaqenil, was not causing any side effect damage -- 
and that my eye/nervous system relationship was in good order -- and the
results of that multi-faceted exam indicated all basically OK on those
fronts.

No more Motrin. I am not planning my next incarnation.

We, along with many others, continue to be greatly concerned about the
paucity of Federal funds for Lupus research and the obviously insane
objections in some quarters to stem cell research. Lupus, as many are aware,
is a predator to which women in general can be vulnerable -- and which also
affects minorities [Native American, Black, Chicano, some Asian groups] very
disproportionately and regardless of gender.

We fight on.

As Ever, Hunter [Hunter Bear]

HUNTER GRAY [HUNTER BEAR/JOHN R SALTER JR] Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
Protected by Na´shdo´i´ba´i´
and Ohkwari'

COMMENTS:

FROM BARBARA SVEDBERG:

Dear Hunter,  Thank you for the medical update.  I continue to hope that the
progress against Lupus goes bravely on.  I like to know how you are doing
and to imagine you in your mountain home.  Barbara

______________________________________________________________________________


JYRI KOKKONEN:

      Hunter,
      It seems that one of the conundrums of medical, or pharmaceutical,
science is that methods and treatments that have been seriously developed
and rigorously tested can still have unexpected and dire effects. It also
seems that your doc is a Godsend.

      And don't forget there's always the time-honoured Finnish folk remedy
for just about everything that consists of "bathing in the sauna, drinking
grain spirits, and ingesting pine tar." In which precise order, I don't
know.

      Yours,
      Jyri

      ___________________________________________________________________________________

      SAM FRIEDMAN:

      I am glad to hear it was no problem.
      Ibuprofen are great when they work, but they can do damage
      best
      sam
      _____________________________________________________________________________________________

      JOHN SALTER:

      Well, that's great news.  I'll wait with the new obituary.

      Do you use a different painkiller now?  I use old-fashioned aspirin.

      JS

      ____________________________________________________________

      KATHY MARDEN:


      Dear Hunter,

      I'm relieved to hear that your health is improving and hope that it
continues.  Thank-you for the update.

      All the best,

      Kathy

      ______________________________________________________________________________

      MARTHA TURE:


      Thanks, Hunter.

      Good to know kidneys have returned to normality.
      We control Jim's acne rosacea with diet - limited but not eliminated
beer, fried food, corn chips, that sort of thing. And no coffee.  He had a
dream of a little dragon coming out of the coffee mug and biting his face.
That did it.  We believe in that kind of dream.  So he dumped coffee and in
two months, it really made a difference.  Acne rosacea can lead to blindness
and so we don't mess around with it.

      Martha

      __________________________________________________________________________________

      ILA MCKAY:

      Dear Hunter (Dr. Salter):

      Thank you for the update. I remember you daily in prayer. I have had
you in my thoughts a lot recently . . . .

      My greetings to the family.

      Ila

      __________________________________________________________________________________

      ROBERT LIVINGSTON:

      Dear Hunter Gray,

      Sorry to hear you had a crisis, but am glad to hear you are getting
 better again.

      I have not taken ibuprofen for many years because of adverse effects.
(It gave me terrible cramps.)

      Also-- I avoid aspartame-- which has been criticized widely, is used
widely-- and has been accused of causing or making worse many illnesses
(including Lupus!).  It is used particularly as a sweetener-- so watch that
coffee if you are substituting Equal for sugar!

      I was shocked when I investigated a story about how the European
analog to our FDA declared the sweetener safe-- clearly (to me)-- putting
economic interests over public health interests.

      This is what I found:

      Dubious EFSA Announcement of Aspartame Safety Saturates Mainstream
News

      Even if aspartame were 100% safe-- I avoid it because I do not wish to
pass on any residual to the war criminal Donald Rumsfeld who made much of
his fortune making it widely available in this  country.

      Thank you for keeping me on your list for news.  Stay well!  I want to
read about your planned trek to Sycamore Canyon next year.

      Sincerely,

      Robert B. Livingston
      San Francisco
      http://www.geocities.com/gruaudemais/confetti_page.html

      _______________________________________________________________________________

      JOYCE LADNER:

      so happy about your good news.


      Joyce

________________________________________________________________________________________

MARY ANN HALL WINTERS:
 
Dear Mr. Salter,
Glad to hear that it was only a " kidney scare ". We are all too familiar with the ravages of kidney disease and the problems that can be caused by Motrin.  My younger (34) daughter was recently told by her gastroenterologist to not take Motrin as it could cause havoc to her now minimally painful small gallstones.
We're waiting tests results now which will indicate if they will have to be surgically removed.
Only you would describe observing your medical situation as a fire lookout observes the terrain in Idaho (smile).
We have a new computer so now all I have to do is go down to the basement which some days is a feat in itself after working 8 - 10 hrs. A family member of one of my patients commented last Fri. about my long hrs. I'm salaried , therefore , no overtime. I informed him that I'm of the generation/work ethic that you work until what needs to be done is done.The pt., family member and the roommate commented that they have run into few people with those values. I think they thought that I was younger than I am . In fact I'm older than one of them .Comes from the genes and  a good ,wholesome , Mississippi upbringing. (smile)
Cont. to progress and I of course will always keep you in my prayers.
Love and regards to Mrs. Salter and the rest of the clan.
WWW,  Mary Ann
 
[Note by H. -- "WWW"  ["We Will Win"] was the slogan of our Jackson Movement of 1961-63 in which Mary Ann was quite active.
 
__________________________________________________________________________________________________
 
STEVE ROSSIGNOL:
 
Hello Hunterbear---

I am glad to hear your kidneys are back to normal---hope all continues to go
your way!

Be strong and be well!

Soli

Steve Rossignol

__________________________________________________________________________________________

 

FROM HELEN:

 
hunter,
 i do so hope you're feeling well,  i like you just can't seem to get things going right, it's everything to the drs. and the hospital for tests , the pain is getting to the point i wish it would give me a break, i have pain most of the time , but the pass few days has been bad, we did manage a wonderful trip to k.y. i think i told  you that we help a mission in harlan , i feel i need to do something worth while , we started doing this a few months ago , it's growing so fast, our church is helping out, we collect stuff that the people in ky can use , hubert and i have made two trips there this summer, this pass trip some of the people at church gave us money to help with the gas, now if we can get a truck load and three hundred dollors someone from there will come here to pick it up , i'm sure we can and will do . i will do all i can to fight my illness , but i have to tell you as you very well know it's awful hard sometimes, our very best to your wife.
                                                     helen --hubert
 
 
[Helen, like myself, is a Native person severely afflicted with Systemic Lupus.  --  H.]
 
HUNTER TO HELEN:
 
Dear Helen:
 
Amid the many brush and forest fires hereabouts -- to say nothing of my personal Lupus -- I was delighted to get your very good letter.  Through it all, you have kept a kind of strong and enduring optimism which is truly inspirational.  [That word, inspirational, I don't use often -- but it certainly applies to you.]  Your work on behalf of those in Kentucky is genuinely admirable.  Only those of us who have SLE, and those in our family circle, can appreciate how downright depressing that thing can be -- to say nothing of associated pain and medical tests and crises in general.  But you keep going, moving right along -- with the support of family and friends.  And that's what I try to do.  Not everyone who is afflicted with this does keep moving.  I have seen some good people with SLE who seem to be almost zombie-like.  But even though, like myself, you find the Lupus trail a tough and hard one -- well, we both keep on keeping on.  And, as I say, our good spouses and other family and friends are critical allies.
 
We shall certainly keep fighting!  And I am always so very pleased to hear from you.
 
Our best from Eldri and me to yourself and Hubert and Crissey and your other folks.
 
Take care, keep in contact.
 
Your friend, Hunter

_____________________________________________________________________________________________

MARK LUZIETTI:

Hunter,

Glad to read things turned out better with your health. I enjoy reading
the posts you send. They bring a little peace to my hectic days. Thanks.

with comradely regards,
chegitz guevara
SUN! SURF! SOCIALISM!

_________________________________________________________________________________________________
 

THINGS AND THINKING [HUNTER BEAR]  SEPTEMBER 29 2007

NOTE BY HUNTER BEAR:  9 / 29 / 07
 
It's snowing outside -- creating a kind of mood that exemplifies the fact that it has been a full year since our Great Cloudy -- our devoted one-half Bobcat -- made her transition.  We continue to await her return in whatever furry feline form Whatever designates.  In the meantime, her good little rival [and her close friend], a small Housecat, Wooly, has assumed many of Cloudy's crucial ministerial functions.
 
Sprinkled hither-and-yon, many in very reachable Cyberspace, are friends and acquaintances who have been curious about my admittedly problematic medical condition. [A number of these have recently inquired off-list.]  This is a short update on that, with a few related things tossed in for good measure.
 
In a nut-shell, I'm really not doing badly.  Under the circumstances, rather well.
 
It's been over four years since I was struck very hard and pervasively with Systemic Lupus [SLE], a fairly rare and basically genetic auto-immune disease which features one's immune system attacking one's body -- often, as in my case, striking a number of vital organs.  It is frequently lethal, has no cure.  During the onslaught of this, I very nearly died several times, was duly hospitalized on a number of occasions, received Last Rites from the Catholic Church.  While the first  major western medicine given me, Prednisone [a steroid], did assist me in fighting back, Pred also induced diabetes and 80 pounds of excess weight.  I declined various potent chemo drugs which carry their own serious problems -- including immunity memory loss. Eventually, phasing out the Prednisone, I shifted to a full dosage of the much less problematic Plaquenil; the diabetes and the 80 pounds disappeared over several months; and I have been doing a strenuous walk faithfully every single early morning, in my huge Lowa Mountain Boots, for the past six and one-half months.  I will keep that up, motivated, in addition to basic survival interests and various commitments, by my Sycamore Wilderness Goal.  It's become clear that I had at least one earlier [40 years or so ago] less severe bout with SLE [and maybe another well after that one] but I went to no doctors, just kept going, and the Lupus receded.  If I could put It 'way down then, I may well be able to do so now.  Anyway, here's the short-range Goal:   http://hunterbear.org/sycamore_trek.htm

Although the SLE has been quite pervasive, it has not affected my Mind [which can often happen in these severe cases.]  Avoiding a retreat into self-pitying solitude, I've continued to read and write [letting, as I always have, my fine spouse, Eldri, do the family arithmetic.]  I avoid medics as much as possible, even those with whom I have considerably rapport -- and I sure as hell avoid hospitals.  Family members and friends and our Furry Little Buddies have all been extremely supportive and helpful.

 
And we have tremendous faith and reliance in our Bear Medicine.
 
I make myself as useful as possible on social justice fronts -- including, among others, the endless struggle to get Federal funding for substantial research into Lupus and related diseases. No new, basic medicines have appeared for SLE in forty-five years. Lupus, especially, is extremely discriminatory.  It has a predatory preference for a number of "minority" groups -- Native American, Black, Chicano, some Asian -- and it strikes all of these in comparatively high numbers. It hits women generally, regardless of race or ethnicity. [If you are a Caucasian male, you can rest pretty easy as far as Lupus is concerned -- but, of course, there are lots of other things ] 
 
Anyway, I see the Lupus situation as very much a Civil Rights Issue.
 
As far as I know, I was born without fear -- or at least have never felt that consciously despite the not-infrequently encountered grave danger situations that have characterized a good part of my life.  Thus I have never claimed courage.  And since early childhood, it's been clear that I have an unusually high pain threshold.
 
I never surrender.
 
Josie [our youngest] took a quite good digital photo of me a couple of days ago -- just before she and Cameron embarked on yet another elk hunt in the mountains near Soda Spring, Idaho, right close to the Wyoming border.  The photo is on the front page of our website: www.hunterbear.org

 

 
Always fighting, Hunter [Hunter Bear]
 
HUNTER GRAY [HUNTER BEAR/JOHN R SALTER JR] Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
Protected by Na´shdo´i´ba´i´
and Ohkwari'
 

COMMENTS:

BARBARA SVEDBERG:

Dear Hunter,  Thank you for your health update.  I was very pleased to read that you are doing so well and the picture was very good and you look good.  It is good to be in contact with you.  I have started going to school to learn Swedish better and am enjoying it quite a lot.  It is good to be around young people and to be polishing up my Swedish.  I watch while things appear not to be much better with USA.  I think that the administration is trying to bankrupt the government both financially and morally and am frightened that the congress does not seem to be able to stop it as I had hoped they would.  I like being retired. 
 
Keep on being well.  Pax, Barbara

________________________________________________________________

MARTHA ELIZABETH TURE:

Hi, Hunter –

Do go into Sycamore.  I swear there is something there for you something wonderful.

 Cheers, Martha

___________________________________________________________________

LOIS CHAFFEE: 

A satisfactory report is always good news - no more than I expected, but good news nevertheless. Greetings to Eldri and all.  Lois

____________________________________________________________________________________

FAMILY COLLOQUY [MACK AND ME]

NOTE BY HUNTER BEAR: 10/01/07

This little exchange between Mack and myself -- some quite personal stuff and thoughts -- may be of interest to our many friends on these lists and to various family members sprinkled thereon. As a rule, I do not, of course, post family-type communications and colloquies. [When he wants something kept in a privileged context, Mack always precedes that, journalist-style, with "not for publication." And we always honor that.] H.

FROM PETER [MACK] September 30 2007

Thanks for the update. We had a blast furnace of a wind here -- 30, 40 mph -- all weekend until tonight, when the temp dropped about 25 degrees in a heartbeat. Dawn thinks it's probably the same system that brought snow to Idaho.

I don't worry so much about your physical health as I do your state of mind. You've always seemed to have superhuman strength. I can't fathom pain getting to you. But I do worry about the rhythm of monotony getting to you -- you were always so busy helping others, getting involved, stirring things up. Keep your guard up against solitude and its ugly stepsister -- self-pity.

We had Scott [Winter] and Deena and family over for dinner last night, and your Web site on our computer on our kitchen table. Scott couldn't believe that picture was taken this weekend. Didn't think you'd changed at all.

Things are OK here. Scott [son] finished his summer job mowing lawns, and they want him back to help clear snow this weekend. He's going to try to return to college tomorrow. He owes for last quarter, but he's saved just enough to pay his tuition bill.

Jack's a short-haired hippie. He bought a loud African-inspired T-shirt at the hippie store, and he unicycles barefoot to work. He used to be shy and introverted, but he attracts a lot of attention when he's unicycling to Taco Johns.

Hunter's football team won handily yesterday. He's the biggest player on the field -- and I'm sure the opposing team's parents must be wondering if he's really an eighth-grader -- but he's so afraid of hurting these kids who are literally half his size, or smaller.

Tomorrow, I need to get serious about our 50-year anniversary coverage plan of the Starkweather killings.

Later [Peter / Mack]

FROM HUNTER [HUNTER BEAR] October 1  2007

Thanks, Mack, for your good letter. We are delighted that the 4 1/2 day Trail Ride in the wilds of western Nebraska proceeded so well and in such a humanly/humanity fascinating fashion. Not surprised you made it -- but, as parents, a bit relieved that there were no mishaps. You'll do others, I'm sure, but I still suggest a good and steady Mule.

SLE is a "deadly disease" -- the verbatim med text characterization -- and most who have it die ultimately from either it directly or via its effects. I intend to be an exception to all of that and the fact that we have managed it effectively for decades -- long before we knew that It was It -- speaks for a favorable personal prognosis. The docs are surprised at my progress. And I keep walking, every early morn.

As I believe my new post -- Things and Thinking -- indicates, "self-pity" is as far from me as the Mountains of the Moon. My thus far 73 years of life speak very strongly to the absence of that quite negative mood condition.

Solitude is, however, an inherent part of my nature. I have always been a rather lonely person and, from very early childhood onward, I've practiced the interesting art of talking to myself -- and then discussing/debating with me. It produces sound judgments and, very much, rich insights and creativity both deep and high. I spent the entire Summer of 1960 in Solitude -- check out the attached link for a good photo of my habitat at that point. While there, I thought some things through, rejected my already settled plan to go off to Philadelphia, Pa. to work for a labor ed program and, concurrently, decided to take my mint-new Master's degree, and go into college teaching, at least as a starter. It came to boil down to a choice between Bemidji State and Superior State. At that very time, Eldri -- soon to be met by me -- faced the precisely same choice as a Lutheran college student advisor/counselor. With obviously no conscious awareness of each other -- separated by vast distance -- we each chose Superior. And that led to Mississippi at the end of its ominous Summer of '61 and a huge family.

Think that one over. As you say, Later -- but let's talk by phone one of these times. Here is my Great Solitude Link:
http://hunterbear.org/forest_fires_in_the_west.htm

Glad things are going to well on your end. Best, D [Dad]

____________________________________________________________________________________________________________

ALICE AZURE:

Good Afternoon Hunter,

I wanted to underscore to the people on the Sycamore List serve the
importance of making friends with solitude.  Your own writings on this
subject and descriptions of your own experiences with solitude are powerful
and inspiring.

For myself, I didn't "court" solitude--indeed, was terrified at first about
living alone, being totally responsible for my well-being, without a life
vision and slim knowledge of myself.  Today, I look back on those nine years
and know that I came of age then.  It just took me so darn long!

Today, I frequently seek solitude and quietness, and am glad when "...the
house and I are alone."  That quote is from May Sarton in her Journal of a
Solitude (WW Norton, 1977).

Alice M. Azure
Maryville, IL 62062

________________________________________________________________________________

HELEN:  [Helen is a Native lady, afflicted -- as am I -- with a quite
serious version of Systemic Lupus.  She is a very brave soul. -- Hunter.]



hunter,
 hope you're feeling well , i've read your message, i wish i could write as
well as you , i'm having some rough times lately, i fell at the shopping
center two weeks ago everything seem to have been o.k. i went to the
hospital to be checked ,they said everything was good, but since then i'm
falling apart, i've had so much pain , it's hard to deal with , anyway if i
can make we're going to new york next week , i think i told you four of my
children live there, one son i haven't for over three years , also a new
grand daughter, and a new great grand daughter, we'll get to see everyone , will
be wonderful , so wish me luck, are you still able to do your walks ? give
our very best to your wife, look forward to hearing from you soon.
helen


FROM HUNTER BEAR TO HELEN:

DEAR HELEN:

Thanks so very much for your fine letter.  Take it from me, you write very
well indeed: organized, clear, and always with a solid and meaningful
message. You do OK!

 I am doing fairly well at this point but, as we all know, one can take
nothing firmly for granted with Lupus. I am very sorry about your
ups-and-downs.  They aren't pleasant -- as I know so very well.
Occasionally I have slight, brief dizzy spells but they are very brief.

 I am much better in the early morning -- so I get up at about 2 a.m. and
coffee-up, drink cold water, smoke my pipe, watch television.  And then, I
do my regular walk about 4 a.m. or so.  It's getting cold here so I wear a
coat and gloves. Wear my wide-brimmed Western hat. Take a cane, just in
case, but have not had to use it for some time.  In mid-afternoon, I start
to "fade" somewhat and usually turn in by 8 p.m.  In between, I take my meds
and eat good meals prepared by the very capable Eldri -- assisted by some
younger family members. Eldri is doing just fine.

I am very glad you are able to travel -- to the Four Directions:  Kentucky,
New York!  And what a great group of family you have!  I am sure your trip
and visit will be truly memorable.

Our very best to all of you.  You give me inspiration and we are very
grateful.

Keep fighting!  Our prayers and best thoughts go to you good folks always.

Your friend, Hunter Gray [Hunter Bear]

_____________________________________________________________________________________________

From Maryam:  [An extremely fine healing prayer -- obviously from a tribal
setting --  and a most welcome and encouraging message which I greatly
appreciate.  H.]

(mishaberach is the communal prayer for healing in hebrew congregations)

May the Great Bear be healed with a perfect healing.
May the mountains and the bear greet each other on their morning walks.

May the power of the bear be strong in healing.

Peace Joy and blessings to you, Hunter.

I am a SNCC woman of Detroit, Mississippi & NY.
Have been reading your posts for years.

only now am taking some time in my life to read and write as i've been
longing to do forever.

and in reading your post today about Lupus I wanted to at least
let you know that I have been grateful for your long & loving writing...

before the electronic times... when we sat and listened to each other...
there were never too many words.

you bring me back to those times of sitting and listening.
in awe of spirit speaking thru each other.

I am forwarding your post to  my dear friend Stina Marie Santiestevan who
has had lupus a long time.
i know she will be interested and enlightened by your experience and
knowledge.

no doubt there are many out there who have sat in council with you, who have
also never taken time to speak aloud.


Peace be with you,

Maryam
(Marilyn Lowen, formerly of Tougaloo... a house down the road from the
college

__________________________________________________________________________

 

HUNTER GRAY [HUNTER BEAR/JOHN R SALTER JR] Mi'kmaq /St. Francis
Abenaki/St. Regis Mohawk
Protected by Na´shdo´i´ba´i´
and Ohkwari'

Check out our Hunterbear social justice website: www.hunterbear.org

[The site is dedicated to our one-half Bobcat, Cloudy Gray:
http://hunterbear.org/cloudy_gray.htm

Hunter Bear's Movement Life Interview [Lengthy]:
http://hunterbear.org/HUNTER%20BEAR%20INTERVIEW%20CRMV.htm

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