Wilkie Wages War: October 14, 2006

Environmental Health Network leader Barbara Wilkie discovered in July 2005 that her chemical injury/multiple chemical sensitivities had suddenly manifested as stage 4 (later stage 5) kidney disease (kidney failure). Despite dire warnings of death within a year, she eschewed dialysis and Western Medicine drugs and took a route of alternative medicine, Traditional Chinese Medicine, and strict dietary changes. She lived well for six years, far beyond the doctors’ predictions.  Barb died at home, surrounded by friends and family, on May 31, 2011.

During this time, Barb documented her journey. From diagnosis through June 2008, she created one huge website page packed with details, plus some side documents on diet and other topics.  We have divided these works into smaller pieces, by date or topic, to make it easier to read and find things.  For dates after June 2008, we have letters, online posts, and other documents.

Barb intended her work to be read and used. We hope this presentation will help you do just that.

Wilkie Wages War on Kidney Disease
(aka Renal Disease or Failure)

OR, AS I SEE IT: Life with yet another facet of living with MCS.
I want to live life while dying.

October 14, 2006

This page being all about me, I assure you, my take on my renal disease is
a far cry from any course of treatment strongly suggested by nephrologists. (One, two,
three, four . . . three inside the Kaiser system, one outside.) I’m not recommending this
way for anyone. Simply reporting it so you all know there is another way . . . I’m not
saying my way is the best way. It’s just that I feel it is mandatory for me.

All nephrologists I’ve seen are hell-bent on convincing me that I have renal disease. DUH!
I can read blood tests as well as the next guy. What none of them has suggested is a SAFE
way of dealing with kidney disease, considering the fact that I am already chemically
injured. Not to mention, the important fact, that a lot of the drugs they rely upon simply
speed the patient into dialysis or transplant. Is that the goal? Or should the goal be
keeping the patient as healthy as possible, as alive as possible for as long as possible?
Obviously, with MCS as my underlying condition, I’m opting for as healthy as possible,
as long as possible and that means as drug-free as possible. Also, of course, as free of
petrochemically derived pesticides , fragrances and flavors as possible. While I can say
NO to drugs, I keep getting whacked by the fragrances in the air and the pesticides
applied to utility poles and the like. Never know when someone from the county is
going to do their damnedest to poison you too. So, beware.

I have already had more than my fair share of adverse events associated with commonly
prescribed drugs. In the 1990s I told my internist: NO MORE DRUGS. If prescribed, I
would not take. They’ve not been prescribed, but drugs have been strongly suggested.
Time and again. It’s how the medical industry is trained. With precious little time given
during their schooling to diagnosing and treating the effects of environmental illnesses.
And, I hazard a guess, no time given to ways of PREVENTING diseases, otherwise, it is
safe to assume, doctors would tell people to look for safer alternatives to the commonly
used petrochemically derived fragranced products and pesticides. And, they’d sure look
for safer means than just automatically dispensing petrochemically derived drugs,
regardless of the health or stage of the patient. Alas.

Having come to realize, after much research, once they make you so sick you have to
go on drugs and dialysis — and they all talk about transplant, which means a life hooked
on drugs at best — they experiment with drugs and dosage. Soooooo, I’ve decided to
experiment with healthy diet, supplements to support kidney function, acupuncture,
hyperbaric oxygen therapy (in hopes of getting stem cells marching to repair my diseased
kidneys), ionic detoxing foot baths, far infrared sauna to help sweat (which my body
never does beyond just a very light layer of moisture once in a while in the sauna), bio-
feed back, and since July 3, 2006, treatment by a wonderful Taoist Healer who uses
jade balls rolled along meridians to improve my body’s circulation.

An aside: I personally have never lived through such pain. I’ve always had my teeth filled
without Novocaine, had all three babies via natural childbirth, have sustained some
pretty nasty cuts which I self-treated with salt water baths and butterfly bandaids.
Admittedly I’ve not yet broken a bone and nor have had surgery, so I’ve not a clue what.
that pain is. But, let me tell you, the rolling jade ball treatment has had me finally really.
understanding the words: keening and writhing. As promised, the intense
“craaaazzzzzzzzy” pain has largely subsided. But the area of the legs inside the shins — along.
the kidney meridian in acupuncture — is still incredibly painful when treated. Let alone
simply touched. Supposedly, when that pain leaves my legs, the kidney blood tests should
improve. According to nephrologists, nothing heals the kidneys. According to alternative
doctors, ALL body organs, when supported, can heal. We’ll see. Time will tell.

Interestingly to me, that leg area is the VERY region where I used to develop the largest
and deepest, spontaneously cratering, extremely slow-healing sores. Those sores were a
direct result of the monthly spraying in the workplace of pyrethroid pesticides. And,
they used to tell me over and over, just how SAFE those poisons were. Ha!

They had a pesticide team come in and spray on a Friday and within a couple of hours of
my appearing at work on the following Monday, those sores, those non-bleeding holes,
would just appear. Mainly on my legs and feet. Painful they were. And UGLY. But also
interesting because I — along with my internist and some friends — could watch my body
work to repair itself. The deep sores would slowly, over many months, fill — grow new
tissue — from the deepest spot up and from the outside edges in. Once “healed,” I was
left with huge brown circles. I began acupuncture in August 1998, a couple months
before finally taking early retirement, and my acupuncturist began “circling the
dragon” — placing needles in a circle around the wounds. That faded the brown spots
and speeded up the healing of my current sores, which were still appearing until I retired
from that toxic environment. To this day, you can see many of my scars. I call them my
chemical battle wounds.

It was a battle to try and get that workplace to see the need for indoor environmental
quality. Alas, they never did get it, until so sadly, two highly thought of, younger male
colleagues died of pancreatic cancer.

Yet, during my tenure, I counted the folks suffering from a variety of cancers and benign
tumors (me included), migraines; recurrent asthma, lung and sinus infections,
bronchitis and pneumonia; repeated cold- and flu-like symptoms, swollen lymph nodes;
dermatological problems all as showing signs of chemical injury. Just like me. Only my
body went into Multiple Chemical Sensitivity, with all major organs affected.
Therefore my body exhibited the Many Chronic Symptoms associated with MCS.
In my case, MCS included all of the above, except cancer and pneumonia. I had never
had headaches, but developed migraines then. Thankfully, once retired and under the
care of an OMD for a couple of years, I can again claim, No more migraines! I still get
headaches occasionally from assaults via petrochemically derived fragrance products.

Of course, workplace personnel were convinced it was all in my head. And if I but
changed my attitude, I’d not have any health problems. Nevermind, them changing to
safer, fragrance- and pesticide-free products. Nevermind that sometimes it is a case of
MATTER OVER MIND!!! As it is with poisoning by petrochemically derived fragrances
and pesticides. (And drugs, I might add. Remember, iatrogenesis is R E A L.)

Oh, my, how I have digressed. Back to my attempts to ward off dialysis for as long as
possible.

My regime may sound weird, but I’m now two and a half months past the date given on
July 26, 2005, that I’d be ESRD and on dialysis or dead within the year. (Or as that
nephrologist so crudely put it: “Check out! You do know what I mean by check out, don’t
you?” To which I replied, succinctly: Drop Dead!)

Of course, I have no proof. But I strongly believe, based on my past experiences in trying
to control MCS symptoms by drugs, that had I just blithely followed the dictates of the
nephrologists, I’d have been one very sick puppy and maybe even dead by now. It’s not
lost on me that it was predicted I’d be on dialysis or dead by July 26, 2006. I’m
convinced — but how can I possibly prove it? — that that was the timetable IF I had agreed
to have taken the recommended drugs.

What I do know, and have proof of, is that by doing it my way, I have continued to live
life fully, have continued to enjoy such activities as climbing a hay stack structure,
sliding down a tube slide, walking through a tunnel of straw bales and up a barn-style
ladder to the top of said straw structure.
(http://www.hauntedbay.com/reviews/westernrailway2005.shtml or
http://www.wrm.org/events/upcoming_events.htm)
We also recently visited Devil’s Post Pile, Rock Creek Canyon for the fall colors, and
Virginia City. We’ve only planned to get to Devil’s Post Pile for the past 49 years. The half
mile walk up the Morgan Trail at Rock Creek Canyon, at about the 10,000 foot level, was
wonderful. We stopped at the vista, rather than going the extra couple miles to
Rainbow Falls, for I did make that journey with an oxygen tank on my back.

Not only do we enjoy life, but I also keep up with laundry, cooking, cleaning, etc. Well,
sort of. And playing with the grandchildren.

I don’t wish to be seen as whistling in the graveyard. Rather, I’d like to think that if
any of this helps any other chemically injured person face the diagnosis of death or
dialysis within a year, then I’ll have served some greater purpose in life.

In the meantime, talk about “hidden disabilities” my kidney disease is hidden . . . unless
you look at the blood tests. Still true as of October 24, 2006.