Wilkie Wages War: Mid July . . . birthday time and also second anniversary of my first “dead”line.

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.

Mid July . . . birthday time and also second anniversary of my first “dead”line.

Well, the above write up was the good news. Next comes an interesting experience . . . and for me, fortunately, that’s all it was. But it sure scared the everlovin’ outta me at the time. And the time was long enough . . . approximately three weeks in duration. It all began the last Friday of June, with a jerk. My local daughter and husband were at the table, and my husband couldn’t believe his eyes, for one second I was aiming for his glass to carefully pour in some smoothie for him (no dairy) and the next second, I had poured it all over the table and had it also aiming for our daughter. My name was Mudd is an understatement.

From that point, though, it started being serious, not just me with a whim to create chaos. My lower jaw would suddenly swing from side to side. I bit the hell outta the inside of my mouth and my tongue. I could not be trusted with a knife in my hands, for I never knew just where my hands would wind up and concentrating on the action didn’t do a lick of good. Oh, there were some amusing moments along with this . . . as in the time I was walking down the steps and my left heel came down squarely on my right big toe. I stood there for the longest time just saying OW, OW, OW, OW . . . I was stuck. Stuck on the word and stuck in that spot. My husband, coming down behind me, offered sage advice. (Having lived with MCS for years, I by that time was used to useless sage advice.) He told me to simply move my foot off my other foot. By that time, I at least had words at my command, and while I might have thought, “Go to hell,” I said, “I would if I could!” Eventually, I could move the left leg and with that, the left heel off of my right big toe and we went along our way.

Other times, in trying to blow my nose, I’d blow the schnoze, but the tissue had jerked away. That was more than humiliating, it was also a mess. One time, I asked the stupidest of questions of one of my healers . . . my lower jaw really did a swing number from left to right and then back to normal and when it settled I asked: “Did you see THAT?” Of course he had . . . I could tell by his eyes. His question was: Barbara all right? Well no, but yes . . . just the latest kick I’m into. And kick I did, but it often was also a whole body movement. Didn’t matter if I were on the chiropractor’s table or the acupuncturist’s or the bed I shared with my husband, my body was sure to have someone hopping for safety as it shuddered or the limbs flew in their own fashion. What worried my kids most of all, is that no matter how hard I worked at writing something clearly, apparently my thoughts were as jumbled as my movements were jerky. Well, that apparently had them burning up the wires . . . computer and phone. For not only were they worried about me, but then what about their dad as well for I was his care giver.

What gave us all hope was that by the end of the first week, I was feeling a little more in control than I was the previous Friday. Then by the end of the second week, I was definitely better than the previous week. And by the end of the third week, I was down to just a buzzing in my lips and fingers . . . the first funny feelings when this began the end of June, but I had failed to pay much attention to at that time. It wasn’t until I had a pitcher full of smoothie all over the table that day that I thought I wasn’t just being clumsy, I had a problem. I only wish I’d been more alert to the beginning, for maybe I might have seen something — a particular exposure, something — that might have brought this on. As it was, at the end, I only could recognize that I had had that same buzzing feeling to bring it on, and send it on its way again. But, I assure you, I came out of that experience, having a whole new appreciation for folks who live with Parkinson’s Disease.

Yes, we see the effects, but let me assure you, there is nothing like living with them. And, for anyone who thinks it’s simply a case of mind over matter, let me tell you there’s more to a system failure than just what you wish to think. That’s not to say that your mindset can’t get you through some pretty hairy experiences. I’m all for keeping a positive attitude — and that includes doctors who do, as well, which is why I have laid down the law: NO MORE NEPHROLOGISTS . . . at least for the time being. While I’ve only visited four, four has proved to be too many to suit me, for they only know how to prescribe drugs — and that includes to bodies that are already chemically injured and cannot take drugs! — talk transplants, which I cannot consider either, talk dialysis, can you imagine undergoing that chemical assault?, and death, which will happen to everyone, but as I’m proving, NOT necessarily on their prescribed time schedule.

So, who needs that kind of doctoring anyway? Not this little red hen . . . I’m sticking with the holistic approach and I’m able to enjoy life on my level. So far, so good. I’d not be able to say that if I took all the drugs the nephrologists tried to push. Now, all that stated, IF there is a nephrologist out there who does know how to help the already chemically injured, I might change my tune. I’d love it if maybe that profession just might learn a little something from my experiences so they can help rather than more quickly harm others who are diagnosed with kidney disease. And of course, in doing it my way, one has to keep in mind that one has alternatives to dialysis and transplant. That alternative is to ride out the health of your kidneys as long as possible and then die. Simple. Just prepare your family for what you might be like your last couple of weeks or so of life. None of us lasts forever . . . I just want to last as long as possible as healthfully as possible and so far, so good, with minor ups and downs along the way. But it sure beats poisoning my body with drugs.

As I’ve stated at the top, I’m not telling anyone this is the way to go. I’m saying this is all about me and my choices. My only hope is that it will in some small fashion, be of help to others. And the biggest lesson in this page is to avoid the superfluous toxins we have thrown at us every day under the term of consumer products. That means flavors, fragrances, drugs, building supplies, furnishings, paints, pesticides … the list is endless. However, there are always safer products to use! The already chemically injured use them, as do those smart enough to try to prevent chemical injury. And “smart enough” includes people in various workplaces, schools healthcare facilities, neighborhoods, and on and on.

— barb