Name is Donna S., and this is my story:
In June, 1994, My co-workers and I were
exposed to toxic chemicals at work during a building renovation.
They were tearing up old, glued-down carpeting
and throwing it against the wall outside my cubicle. The “cloud” of particulates
was so thick, that we all were choking and our eyes were burning.Our skin
even felt like it was burning. The “cloud” was worse than a fog, and we
could barely see each other through it.
My eyes swelled bigger than golf balls,
and I could not see. The pain in my eyes, sinuses, and ears was terrible.
I was forced to be exposed 11 times in 6months. Each time, my eyes would
swell SHUT so I was blind. I would wheeze and cough so hard that I would
soil myself and vomit. My ribs are constantly painful from the constant
coughing. The Doctors gave me cortisone drops for the pain & swelling
in my eyes, benzocaine drops for the pain in my ears, pain medication for
the constant sinus and headaches, prednisone for the blisters that rose
all over my skin, and all kinds of breathing apparatus and inhalers.
I spent weeks in bed on pain medication with ice packs on my eyes to reduce
the swelling. It is so frightening to be “blind”.
Upon my forced return to work after each
exposure, I would cry while driving to work because I knew I would have
to go through this pain and blindness again. The longer it went on, the
fewer days it would take before my eyes were swollen shut, my skin was
blistered and I could not breathe. Each time it took longer and longer
to recover, and I was hospitalized several times.
When I arrived home from work each day,
I would have to strip my clothes off in the garage and throw them in the
washer and RUN to the shower because my skin burned so badly, and because
I HAD to wash the chemicals off. I still have to do that if I go out ANYWHERE—to
the Doctors’ offices, lawyers, etc. The company said they would get
us respirators and would clean up all the mess, but the dust covered everything
we touched and breathed.
Why did I stay? The pay was very good.
The team was great. We were working on a computer project that was interesting,
exciting, and fun—cutting edge of technology.
We were working 70 hours a week because
we had impossible deadlines, but we all enjoyed each other’s company and
the project we were working on together. We also all expected that the
Company would “fix the problem and take care of us”. (Ya, Right!!!)
On December 1st, 1994, I returned to work
from a couple of weeks of recovering from my previous exposure. I had been
moved to another floor, so I was very hopeful there would be no problems.
I lasted 3 days. By the 3rd day, my eyes
were swollen up to the middle of my forehead. The environmentalist told
me to go home. I was having a great deal of difficulty breathing. She told
us that our symptoms indicated exposure to VOCs (Volatile Organic Compounds
which are carcinogens).
We began to be very frightened about what
permanent damage was being done tome. Only God got me home that day.
I had to hold one eye open with my fingers to see, but all I could think
of was getting home, getting out of those clothes, taking pain medication,
showering the stuff off me, and getting some cortisone drops in my eyes
and ice on my eyes.
The Doctor kept me out of work throughout
December and January, and I was totally homebound. I called my boss and
co-workers every day to let them know I wouldn’t be in because the Doctor
hadn’t released me yet. I spent many hours each day on the phone with my
co-workers to help them with the project. They knew nothing about Procurement
because I was the Team Expert on that. The Human Resources office was in
touch with my doctor so much that he started refusing to take their calls.
He faxed them reports instead.
Throughout this whole ordeal, I was threatened
with job loss, and pressured, and treated abominably by management because
I was sick (They MADE ME SICK, I couldn’t help it!) I was told by my boss
and by Human Resources to “Get used to the pain or quit my job!”
Can you believe that? How do you work when
you cannot see?
On January 23rd, 1995, I received a Certified
letter in the mail from the company, telling me I had been fired for job
abandonment on ‘January 9th, even though I had 6 months of sick leave coming
to me and I was under a Doctor’s orders not to return to work yet. I had
talked to my boss every day until the day I got that letter, and he never
even hinted up to the 23rd that I didn’t have to call because I was fired
on the 9th.
I had a nervous breakdown.
I was diagnosed with severe Clinical Depression
and Post Traumatic Stress Disorder. It took months to get me up and out
again, and then I would just walk to the mailbox and get lost, and cry
because I couldn’t find my apartment.
The Doctor told me that I had a 50/50 chance
of never being able to work in a commercial building again. I prefer to
think the glass is half full, so I looked for work. I tried 3 jobs through
a temporary agency. On each one I lasted only one day and was very ill.
On the last one I had to be hospitalized with chemical pneumonia.
In November 1995, my attorney sent me to
the Environmental and Neurological Doctors for testing at the University
of Southern California. My friends took up the collection to pay for our
gas and food, and the attorney paid the$1,500 Doctor bill. The Doctors
at USC told me I have Degenerative Encephalopathy of the brain, eyes, and
ears. I have lost most of my short-term memory, and 50% of my sight and
hearing, and have Chronic Fatigue Syndrome. They told me the only
“cure” was to build an “environmentally safe house”($350,000 to $500,000)
in the mountains somewhere where the air is clean. Then my time left to
live would go from the estimated 1-2 years to many more years because I
would be living like “the boy in the plastic bubble”, and that would slow
down or even stop the disease.
Turns out that my “settlement” won’t even
cover a “safe house” for me. It may cover a year or two of my medical expenses.
So here’s how I feel every day 24/7. I
have loss of long and short-term memory, Depression, PTSD, Panic Disorder,
Vertigo, intermittent slurred speech, 50% loss of vision and hearing, Blurred
vision, Glaucoma caused by2-1/2 years of using steroid drops in my eyes,
chronic and constant sinus, ear, eye, head, rib and throat pain. Difficulty
breathing without medications and breathing treatments, Chronic candidiasis
(yeast infection) in my mouth and throat, Poor concentration, Constant
pain in back and chest, Chronic coughing and wheezing, high blood pressure
and cholesterol, Osteo-arthritis in my hands and feet also caused by the
chemicals, Loss of bowel and bladder control so I have to wear protection,
Central nervous system tremors in my hands, arms, and head (I call it my
Katherine Hepburn look), Cataplexy (I lose consciousness and fall down
and hurt myself. When I am conscious again, I am totally paralyzed for
10 minutes to 3 hours.), narcolepsy, Chronic fatigue syndrome, an enlarged
and painful liver from having to handle all the poisons, night sweats and
chills, temporary loss of muscle control when exposed to ANYkind of chemical.
Went into respiratory arrest when exposed to chlorine. So my sister, Nancy,
got me a special filter for the shower, but I had to wear my charcoal-filter
mask to use the bathroom or sink.
The doctors predicted that the degeneration
would continue until I could no longer see, hear, or think, and I would
die by Nov. of 1997 unless I could get into a “safe house”. Well, God had
other plans. Doctors can be wrong, God is with us helping us to bear this
burden, and God will HEAL me. I KNOW He will with all my heart.
We have no scented products or chemicals
in the house, Nancy has managed to buy some HEPA Air filters and a HEPA
vacuum, and only cleans with baking soda and vinegar and such. I have to
wear only cotton, and lots of other “have to’s”, some off which we cannot
afford to do. Nancy ordered $500 worth of oxygen equipment for me so I
can do this new oxygen treatment which seems to be helping quite a bit.
We have no visitors. No one can come to
our home without first “detoxing” themselves from as many chemicals as
possible - they can’t wear any scented products and have to wash their
clothes in baking soda instead of scented detergent, or I will have a “reaction”.
I have to wear an organic cotton, charcoal filter mask whenever I go outside
My “settlement money” from Nevada Power
Company will maybe pay for my medications and care for a couple of years.
I fought for four years to get Social Security Disability, and finally,
a few months ago, received it. I get $496.00 per month which does not even
cover a third of my medications.
My sister just bought a 10-year-old house,
and had the ducts cleaned, bought a whole-house hepa/charcoal filtration
unit (big bucks), she cleaned and sealed all the carpeting, and cleaned
and sealed the walls and cabinets, with AFM supplies. I now use an
oxygen generator/humidifier at night, and during the day I use pure oxygen
She had an expensive whole-house water
filtration system installed, which is wonderful. She had to have the gas
stove, heater, and water heater replaced with electric ones. Now for the
first time in my illness, I usually wake up WITHOUT a headache. What a
blessing! I used to sleep (CFIDS) about 18-20 hours a day, but now am up
alot more than I was. The sort-of-safe-house has made a big difference
for me. Now I have hope.