Kathy S.

I have had mild problems compared to others with MCS and therefore I am more mobile.

My brain allergy was my primary symptom of concern when I first went to the Environmental Health Center in Dallas. I did have body wide symptoms before that time, showing mild problems in the works. I will always believe I had a mild case of lupus involving my lymphatic and nervous system, kidneys, liver, skin, thyroid, respiratory and circulatory system yet have nipped it in the bud.

What made this possible? Persistence to lead an almost non-chemicalized life and participation in a detoxification diet. I have learned too much to deviate from chemical avoidance, and my present occupation as a piano teacher enables me to do that along with a safe home and non-fragrance policy in my studio.

My poisonings were due to a "pile-on" over many years.

It began before birth due to having a father who smoked and ultimately developed lupus.

My mother is now finishing her years with advanced Alzheimer's and severe rheumatoid arthritis, another auto-immune disease. While watching my brothers play baseball, my family was gassed down frequently by DDT mosquito dope trucks; took part and lived; in renovation projects of two older homes, and two new homes, three involving toxic carpet; applied pesticides to garden and home with sprayer in my hand several times. Last but not least, painted our dream home all summer.


 
Kelly S.

My family of four lived unknowingly in a "diesel tank". (heating fuel oil had been leaking under in the crawlspace under our home).

Gradually started experiencing unusual symptoms for our ages (husband 36, myself 34, daughters 14 and 11). Affected all areas of our bodies each to a different degree.

Developed full-blown MCS upon moving OUT of our home. Couldn't tolerate being around any perfume, hair spray, car exhaust, new pavement, cleaning products, most stores, new carpet/paints, etc. for at least one year. Two years later we no longer are AS sensitive, but we still cannot tolerate petrochemicals.

I understand it is easier to rid body of hydrocarbons then it is to rid of chemicals like dursban. My heart goes out to all who suffer from MCS.

And just because an entire family suffers from it doesn't mean a doctor has a clue on how to diagnose or treat it.

We know.

To fresh air, Kelly


 
Linnea S., 

Poisoned by pesticides and perfumes while working in a sick building at the Ohio Environmental Protection Agency.


 
Lois S.

In Memorium

Suzanne Fisher writes --

I had a very dear friend, Lois Stewart, who had such intense migraines for several years that she eventually took her life. She was a friend, attended one of my multi-week workshops, and was a parishioner in the church I pastored.

She asked me not too long after I became ordained in 1992 if I would do her funeral. I laughed and assured her I would if I could get out of my rocker by then, never dreaming that hers would be the first funeral I did as a minister.

In retrospect, I realize now that she probably had severe chemical sensitivities, but had not come across that possibility. Her doctors kept treating her like a hypochondriac. They could find no "reason" for the relentless, disabling migraines Lois had constantly. Her family insisted that her migraines would disappear if she would just get out and become more involved in life. She felt they thought the migraines were her fault, blaming her for having them.

She believed them all and kept admitting herself for psychiatric in-patient treatment over and over, even undergoing electro-shock treatments a couple of times. She sought help with the migraines in every medical way possible.

If I only knew then what I know now about chemical sensitivity, maybe I could have helped her. As it is, I was connected to an oxygen tank, just back from the near-dead myself, when I did her graveside service in 1997. I could not keep the tears out of my voice, as I worked hard to share words of comfort with her many mourners.

Lois was a beautiful, gentle person with a rollicking sense of humor when she wasn't clenched in migrain pain. She deserved better than the life she faced until she could no longer stand facing it.

I Have given Lois' story to appear here on the Wall. It means a lot to me to know she is honored in this way, and that perhaps her story can help someone else realize that there IS hope.

Love and Light,
Suzanne


 
My name is Maxine

I was chemically injured by an exposure to pesticide after having my home treated for carpenter ants.

I lost my home, my ability to earn a living, and suffered brain damage.  I have been diagnosed with toxic encephalopathy and MCS. I am so intolerant to pesticides and other common chemicals that I cannot find a safe place to live.


 
Meg F.

I was a commercial printer for twenty years. I started running a small multi in my early twenties, went on to production and estimating, and then sales—almost all while in manufacturing locations.

One printing company I worked for eight or nine years ago did the application of fragrance to those cello-wrapped inserts that used to come in department store bills. The smells went all over the plant. At the time, I came down with what was diagnosed as mononucleosis (even though I was in my early thirties) because I became so fatigued that I slept my lunch hours in the back seat of my car. I also developed an impossible rash on the inside of my hands that my doctor could not explain.  (I tested negative for syphilis, the only disease he could think of).  I could not drive, work, even think, the itch was so severe. The only thing that helped was very strong anti-histamines, which also put me to sleep.  At the time, I didn’t make the connection to the chemicals.

Most recently, I was an employee of a sheetfed lithographer with 2 6/C; 15/C, 1 4/C and 1 2/C 40” presses (and two had in-line aqueous coaters). The Material Safety Data Sheets I collected showed exposure to benzene, toluene, styrene, ammonia, methyl chloride and many other substances masquerading as various trade products, including MRC Special, (Metering Roller Cleanser), Federoid, etc. I did press OKs on all my work, all forms, and also my office was directly above the pressroom. There was no ventilation, window or air-conditioning in my office. The fumes were all through the floor where I worked.

When I started there (as an estimator, in a ventilated windowed office, with no significant time in the pressroom) I was a dancer and a size 12. After two years, I noticed that my allergic reactions were returning, having abated since my early twenties. One day, I was spraying hair spray and noticed I was wheezing.  I went to the Doctor, he gave me my first asthma inhaler ever,Maxair, and the race was on.

After four years there, I couldn’t walk three blocks, had fibromylagia, muscle cramps, joint pain, heart palpitations, severe asthma (was on four inhalers a day), and gained 100 pounds. I could not concentrate, would lose my train of thought and was constantly compensating for the overwhelming fatigue and lack of productivity by sneaking home for naps and working on weekends, when there were less fumes about. I remember one instance when a coworker asked me repeatedly for some work to be completed, and as much as I wanted to comply, I could not. He came in asking me again, and I just started crying, “It’s so hot in here. There’s no air. I can’t think! I can’t do the work if I can’t think!”  The next day, he brought me a little fan, and put it over my desk.  Unfortunately, it didn’t help.

My son complained that I “smelled like ink” when I came home from a press OK, and I couldn’t lose the smell. My skin was yellow. A few months before I saw an EI doctor, another worker on my floor came down with a sudden case of incurable brain cancer. And he looked just like me: distended belly, serious food sensitivities, and the sickly yellow oily film on his skin soon after coming into the shop. After six years, in July 1997, I was diagnosed with chemical toxicity.

My world turned on end. I walked away from a good business that I loved. My skills were such that clients and colleagues said I was gifted at my work, which I thoroughly enjoyed.  Having finally overcome the odds of being a woman in a man’s world, I was sunk by my body’s reaction to substances the bosses told me COULDN’T HURT ME.

The process of detox was no picnic: I did saunas, IV’s, rotation diet, organic foods, avoidance of exposure, antigen therapy. It cost me a fortune, and if anyone out there suffers under the delusion (as I did) that you are covered by workers’ compensation, Social Security Disability or health insurance, get a grip!

I was amazingly lucky that I had some (retirement) savings, which went to medical bills, and a private disability policy that saved me from losing my home. I also moved out to the beach about 20 miles from New York, and I’m doing much better here. I have just won the medical portion of my workers’ comp claim, after a year. The insurer’s doctor found for a permanent partial disability, based on occupational asthma. I had to take a methacholine challenge test to qualify for that, and I wouldn’t recommend that to anyone.

It’s been really tough, and a year later I’m just starting on the road to recovery. But I am grateful for every bit of my life now—grateful for good days when I don’t require a nap. Grateful for the strength to excercise and move, for the sense of peace that comes from managing and preparing my own food, water—and knowing where it all comes from. I’m grateful for the experience of my doctor and the others at the Center where I go, for the community on the Listservs. I’ve weeded out a lot in my life: alcohol, a lot of stresses, negative influences, etc. I’m still in the process, still “in recovery”.  But I see my purpose now as more than a “cog in the wheel”. Hoping to embark on a new career, hoping to find value and contribution.

My friends say I’m saner than I’ve ever been. I let go of my shrink in the first months of detox, because she was unwilling to accept that my emotional lability might have had it’s roots in a physiological response. I’m calmer, and after a year, my lover is finally starting to accept that I won’t tear his head off (the way I used to after a long day in the chemically laden workplace followed by a meal I could not tolerate).

I am especially interested in hearing from and sharing experiences with other printers, as I am concerned about the future of a business that I always believed is connected to pleasure, freedom and expression. I worry for the health of my former co-workers.  I understand (and regret) that I can never go back, but I am certain that my Divining rod is strong. I can feel it, and there is hope if we can translate our suffering into action on behalf of our beleaguered Planet Earth.
Bright Blessings!

E-mail Meg


 
Merrilynn P.,

Professor at the University of Maryland at College Park.

Injured in the classroom in which I taught. The room was contaminated with Orthene (aka acephate), an organophosphate.

The University was informed of this by another faculty member on the first day of class. His class was moved elsewhere, but no attempts were made to inform any other occupants of the room. My exposure resulted in burning in the lungs, heaviness in the chest, and atrial fibrillation. The connection to the classroom was made “with reasonable medical certainty” by 3 cardiologists, one at Johns Hopkins.

I am now so sensitive to pesticides that I cannot enter most supermarkets, restaurants and many doctor’s offices.  I have had to quit my job and return my grant to the National Institute of Health.

Pesticide exposure has cost me my health, my career, my dreams.

E-mail Merrilynn


 

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Last updated 3/3/00