Andi D., 36 Executive Director,  Health & Environment Resource Center;  free lance writer  and Web designer.

I don't know why I am so sensitive to certain environmental chemicals, but the reality is that I am.  My neurologist tells me that I have a form of migraines that take on an odd array of symptoms that can be so debilitating that my life has been altered significantly.

Sure, I have a family history of migraines, coming from both sides of my family tree.  But I seem to be the only one in the family who must ardently avoid my chemical triggers in order to be free of my migraine symptoms.  Because one of my triggers are fragrances this means that my world has become a very limited one.

Learning to live with migraines hasn't been easy.  By the summer of 1996 I had been living with an unremitting migraine for over a year.  It wasn't until I discovered that fragrances were a major trigger for me that I was able to start to break free of the pain. 

Over the last 4 years I have had to systematically replace all of the products I use in my home with fragrance-free alternatives -- no easy task.  I have also discovered that fragrances are not my only trigger, so I have also had to replace most of the products I used to clean my home, and avoid auto exhaust whenever possible.

Now I find that my migraines have taken on a new, more subversive form.  Instead of resulting in an instant headache, my triggers now cause other, often disconcerting symptoms.  After exposures to fragrances I can quickly become disoriented and confused, making it difficult for me to complete my task and dangerous for me to drive myself home.  This disorientation will last for several hours, then the wall of pain will hit.  This can last several hours to several days, with the aftereffect lasting another 3-5 days afterwards.  One "hit" of perfume can set me back a week -- a loss I can't afford.

Treatment, by the way, is ineffective so far.  There is no "cure" for migraine, and the drugs used to prevent them are not exactly free of side-effects, nor are they always effective.  The only way I can prevent a migraine is to avoid my triggers, period.  It is a lonely life sometimes.

I haven't always worked so hard to avoid chemicals.  In fact, you could say that I have done just the opposite.  Despite a lifelong fascination with chemistry, I was not inclined to major in it at first, but after 3 years as a P.E. major I switched to chemistry.  I graduated with a BA in chemistry in 1987, and have been an environmental professional since 1988.  I am currently a free-lance writer, a webmaster and a mom.   I am no chemophobe.

I don't know if my health history would be of interest, but here it is anyway...

Growing up I was extremely healthy until college.

At 18 I contracted mono, while at the same time I was taking anatomy and working with a formaldehyded cat. Each week after lab I'd have a relapse of the mono. Was sick most of my freshman year in college.

I started developing severe headaches as a junior, perhaps as a result of chemical exposures in chemistry lab.

At 21 I developed septicemia from an aggressive kidney infection. I have never been healthy since.

At 22 I went to work in an office that had high ambient levels of VOCs. Was sick with sinus and bladder infections, persistent 'flu-like' symptoms, unexplained fevers, chronic headaches, and massive upper respiratory drainage until I quit the job at 24.  I had also just moved into a house that had been treated 1 year previously with chlordane, a now banned termiticide.

At 26 I developed a severe reaction to Thompsons' Water Seal.  About the same time I developed a lump over my left eye that was sensitive to the touch (recently diagnosed, after 8 years of asking the various physicians I came across, as a neurofibroma).

At 27 I went back to work as a chemist and became ill almost immediately, developing severe joint pain that required me to take an hour to get out of bed each morning. Left that job, and was quite healthy again with the exception of having developed severe migraines and a sensitivity to cigarette smoke. Meanwhile my lump was becoming worse, the pain more persistent.

At 29 I went through a divorce and moved to a house that had a heavy mold content. I lived in that house for 18 months and spiraled into a steady decline.  I suffered from an unremitting migraine for over a year.  I was tired, lethargic and in constant physical pain.  As I got the migraine pain under control I discovered for the first time a clear relationship between exposure to fragrances and onset of pain.  I slowly began the process of removing fragranced products from my life.

At 31 I moved from that house, slowly improved, had about 3 months of really excellent health but then winter hit and the gas furnace prompted another downturn. 

At 32 I moved to Colorado, got hit hard by allergies in March, with reactions to perfumes, mold and natural gas becoming more frequent and more severe.  My symptoms included headaches, respiratory distress, extreme fatigue, 'pins and needles' sensation in the face, burning eyes and nose, dental and jaw pain, sinus swelling, and mood swings, in no particular order (which symptoms is present depends on what I'm exposed to).

By December, after 10 months of chiropractic treatment my level of reactivity had been much improved.  However, I was not out of the woods.

At 34 I moved to Alaska and find that the level of auto exhaust in the air is quite toxic to me.  Because people leave their cars running while they shop, the "fresh air" brought into stores is highly contaminated.  As a result I am unable to shop without becoming disoriented. 

In the last year I've been able to identify certain exposures that cause problematic reactions:

Fragrances: these are a mixed bag for me.  I can get classic migraines, including head pain, disorientation and mental confusion, numbness of the face, show symptoms of drunkeness (slurring of speech, loss of balance, etc.), severe depression, anxiety and rage, or asthma-like breathing difficulties. 

Products containing Glycol Ethers: severe swelling of the right sinus, burning and unremitting pain.

Auto exhaust: "deer in headlights" disorientation, loss of ability to make decisions, loss of concentration, confusion.

Natural gas: breathing difficulties when exposure is high, joint pain when exposures are low but chronic.

I'm sure this is not a complete list as I have made a concerted effort to avoid exposures to known toxins like pesticides and laboratory chemicals.

It has taken at least 4 years for my body to detoxify enough for me to be able to identify specific reactions.  Now, because I live a relatively non-toxic lifestyle (I stopped short of remodeling my home to eliminate ALL sources of low level emissions, so I haven't completely detoxified my environment) I am able to identify the source of an exposure and link it to a specific reaction almost immediately.  I now have many days of clear thoughts and little or no pain, which is a significant improvement over where I was at 4 years ago.

9/01

This space marks the place where some of us would share our stories if we were not already being harassed and threatened for our "strangeness", for speaking out, or just for being disabled. Each voice lifted makes each lifted voice more likely to be heard, here at THE WALL, or out there in the trenches of day to day survival and activism.

Call me Barb-ie.

That's not my name, but since I am involved in litigation relating to my chemical injury at work, I can't use my real name here. I worked in a very creative regular office type environment for a fortune 500 corporation - you know - with cubicles and everything. And this was actually my dream job that I had only recently gotten. 

I was healthy and in my late 20's in July of 1996 when my department was moved into new office suites. Everyone started getting headaches right away the first day, and everyone was quick to blame "stress".  Well by the third day several of were having more serious problems (I was throwing up) and everyone was now having dry itchy eyes, problems with contact lenses, more headaches, etc. and the majority of people in the office were inhaling Advil and using antihistamines, etc. My symptoms progressed to a point where I was unable to focus or concentrate (or even think), I was pacing like a caged animal, I was having respiratory problems, coordination problems, severe headaches, nausea, itching and rashes, pustules, intestinal disturbances, emotional outbursts, sore throats, joint pains, major swelling, light and noise sensitivity, etc., etc.,etc.

In less than 3 weeks time (where I had only spent approximately a week and a half in the building) the company's own doctors removed me from the building (and several co-workers soon followed.) We have since found out that there were numerous problems with the building we were moved in immediately after construction was completed without the company "baking out the space" (which was company policy to do), the building was pesticided prior to our moving in , and was regularly sprayed in the evenings for ants, the air intake for the building was in the parking lot sucking in exhaust and gas fumes, there was a photolab in the building which was essentially vented into our workspace and the HVAC system had been malfunctioning from the time it was installed so that nothing had been vented out of the sealed windowless building at all.

As a result of this injury I now have been diagnosed with toxic encephalopathy, organic brain damage, reactive airway disease, MCS, and dermatitis among other things, and have had problems with the thyroid, liver, kidneys, thymus, lungs, adrenals, lymph system, skin, brainchemistry, hormonal imbalances, intestines, etc.

The past 2+ years have been challenging, to say the least. I am still battling the WC system, although I am close to finalizing that case. I am waiting to hear from Social Security if I am approved. I have not received a dime from either short or long term disability insurance and am still fighting that.  I have a liability case against the employer and several other parties that is not exactly pleasant, and could drag on for quite some time. I have been sent to doctors who say it's all in my head or that I am faking, and I was groped by one of these doctors during an exam.

I have been very lucky that this injury has not been as disabling for me as MCS has been for others, and that I am finally starting to be able to function in a limited capacity in the world and have started working at an intermittent part-time job, rather than feeling like a prisoner in my own home.

In spite of how well I am doing, one good (not) exposure to perfume or smoke or cleaning products or air fresheners or fabric softener or asphalt or gas fumes or (the list goes on and on) and I can actually be right back where I started with this whole injury.

My family has been really freaked out over this whole thing, my boyfriend and I broke up when I was injured because he couldn't understand what was happening to me, and my friendships have all been strained because I am continually asking them to accommodate me by not wearing perfume and hairspray and fabric softened clothes, etc. and because I can't go many places they want to go.

I have been treating almost entirely holistically: acupuncture, homeopathy, chiropractic, Chinese medicine, neural feedback, kinesiology, nutrition, detoxification, herbal remedies, sauna therapy, energetic healing, colonics, amalgam removals, yoga, qi gong and therapy, to name just a few. I truly believe these treatments have saved my life and allowed me to be doing as well as I am. I continue to improve and get stronger and somewhat less sensitive to my environment with time and avoidance. I am still very cautious about what I let myself come into contact with, since I don't want the now lower-capacity toxic load to get overwhelming again.

The scary thing is that this is for life...

When I was a child, I developed epididymitis at age 12, which had me in the hospital for 3 weeks, and then home for another 3 weeks, before my doctors released me to return to school. Some of the outcomes of that were sterility, loss of resistance to normal childhood diseases (I had respiratory infections almost constantly from that point on), and what I believe were the beginnings of fibromyalgia.

For years, I was able to continue functioning by forcing myself to endure the pain and exhaustion, at least until I had been in the US Air Force for a little over a year, and was stationed at Wurtsmith AFB, Michigan in 1981.  WAFB is a B52 base, and the air is full of JP-4 fumes. I developed corneal blisters that were so bad my corneas were still fogged over 2 years after I got out of the service, along with photosensitivity and increased sensitivity to all volatile chemicals.

I didn’t realize I had become sensitized at the time, and so was retrained into "Disaster Preparedness", which meant that I performed the military equivalent of FEMA services: writing plans for chemical spills, teaching people how to deal with local natural disasters, conducting nuclear, biological, and chemical warfare defense training, managing shelter and emergency response teams, and the one thing that finally pushed me over the edge into my current state of sensitivity: operating the gas chamber.

According to official doctrine at the time, CS gas was perfectly safe - it caused irritation of the skin, eyes, and respiratory system, but had no long-lasting toxic effects. So, operating the gas chamber was assigned to the lowest-ranking member of the disaster preparedness staff on base (me), and protection available consisted only of a gas mask. Now, we know that CS produces cyanide gas when heated (when exposed to open flame or heated over a hot plate, for instance), which an ordinary gas mask does not protect against, and we know that it produces central nervous system damage no matter how it's absorbed.

Since 1984, when I got out of the Air Force, my sensitivity has remained high enough that standing on a street corner during rush hour can earn me a trip to the emergency room, as can being in a room with someone wearing heavy perfume, or walking into a building where painting, floor stripping, carpet installation, or disinfecting has occurred recently.

I’m now fighting with the Social Security Administration because I haven’t worked since September of 1997, due to chemical exposure at my last job.  I don't know what the chemical (or chemicals) was, but I ended up getting a Benadryl injection in order to breathe again.

Right now, I'm simply trying to live without spending too much time in emergency or urgent care centers, and trying to get SSA and voc rehab to properly deal with my disability.

e-mail Bill

My name is Bob. 
     I am a 42 year old Journeyman Printer from Iowa. I live in the country with my family of five, including myself. I worked for the Sixth largest Directory Printer in North America for the past, over 24 years. Where I was overexposed to a pressroom solvent on the fifth of March 1998. 

     As I look back into the recent past. I had not felt well for at least a couple of years. As my Company had installed a new, state of the art computerized vertical Rockwell 12 unit printing press, back in 1993. In the operation of my duties, I had to clean the press cylinders daily with a Barsol solvent, in an enclosed area. Many times through the years, I would back out of there with an extremely high feeling, and then get some air, and be fine later. At the same time I started noticing a cocked feeling in my left eye, that would come and go as I cleaned the presses cylinders through the years. As time progressed, I developed an off balance feeling continually, along with that, chronic fatigue set in, and I felt high all the time. I thought it was just stress or something, and didn't give it much thought. Around March of 1997, I experienced a total loss of libido also. From around 1993 after the new press installation. I began to have chronic sinus problems, and constant sinus infections. I went to the doctors several times, complaining of a dizzy feeling, which I thought to maybe be inner ear infection. Although I never had that before. The Doctor would find no ear infection. But gave me antibiotics anyway. I even had a turbinate surgery on my sinuses several years ago, to help the inflammation and irritation. That breathing a lethal mist of ink and acid etch daily for years had caused me. Then around two months before my overexposure in March. I began to start having severe five minute long sneezing attacks, one hour into each day at work. Along with terrible low back spasms. My nose and eyes would burn continually, and confusion, short term memory loss, and lack of concentration set in also. Even at home, I started having extreme chemical sensitivity problems to every day household products. Such as perfume, Lysol spray, shampoo or a host of other every day, man made scented products with fragrance. My wife thought that I was going crazy I'm sure. As I eliminated as many of the offending irritants as possible. Which seemed to help me at home somewhat. But my problems continued at work. The muscle spasms got so bad that I could hardly stand up. My fellow workers would see me sitting down frequently, to stretch out my lower back, and complaining of the pain. Then I began to taste the chemicals in my mouth, a sickening metallic like taste. I felt so tired just one hour into the day. That I felt as though I had put a 15 hour day in! A couple of  days before I was overcome. I called in sick with flu-like symptoms. I ached all over and felt like I was going to die. I sneezed continually and my nose ran a clear liquid. My eyes and nose burnt terribly, and around them also. I began to make many job related mistakes. Having a great deal of trouble concentrating on anything. I worked a couple more days. Then on 3-5-98 I cleaned the cylinders, a couple more times too many! The Companies Work Comp doctors had me off work till the April 1st. Doing only the most basic of tests. They could find nothing physically wrong with me. So I proceeded to the University Of Iowa Hospitals in Iowa City. Where a prominent  Occupational Medicine Specialist tested me, finally diagnosing me with an acute work related episode of Solvent syndrome. Saying that I should have no long term damages from sed expose at that time........ Ya right!  He sent me back to light duty on April sixteenth, then to full duty around the eighth of June. Where I continued to have Severe chemical sensitivity problems, at work, and at home until this day. Finally, after an antifreeze spill at work in late September. I went to our company Doctor after work. As I was on my way home that night, I just felt terrible. My stomach was churning, along with a malaise of other problems, that I presented at the clinic. My employer gave me a three day suspension, without pay. Just for not having informed them that I was going to their Doctor! I went to my family physician at that time. Where I asked to be referred to The Environmental Health Center in Dallas Texas. He signed me a written excuse to be off work for two weeks, While using the Federal Family Medical Leave Act. After having given my Company the doctors excuse. And signing their FMLA leave form. The Companies Vice President proceeded to then threaten me with insubordination. If I was not at work the following day! I went directly home, threw a few things in the car, and headed for Dallas! 

     Upon my return to work 3 weeks later. My Dallas Doctor gave me a temporary restriction letter, to present to my employer at that time. And stating my severe sensitivity to chemicals. And the need for me to be kept out of the Pressroom Environment until further notice. My Employer proceeded to tell me, that they could not meet those restrictions. And I was subsequently terminated from my over 24 year job on 10-22-98 of  that same day. I have since been diagnosed with mild Toxic Encephalopathy, along with substantial nerve damage to both eyes. Along with severe chemical sensitivity problems. And have been labeled as totally disabled at this time. With a Workman's Compensation case pending at this time.To hopefully right some of the wrongs of this great injustice.

     Something can, and must be done about the proliferation of chemicals on the American people in general. People are being treated as disposable items. Companies use them until all the good is used out of them, and then dispose of them. Putting the almighty dollar ahead of their workers safety. Our Government, our Employers, and our Doctors, must wake up and smell the coffee, so to speak about this issue. Many people of all ages and race's, are getting very sick from these unnecessary exposures. And unless immediately addressed, the problem will no doubt get much worse in the near future. How many more peoples lives will be ruined before something is done about this? 

     This has really been a wake up call to my family and myself. As to the poisons that we are subjected to on a daily basis. Not only at work but at home also. Just read your toothpaste label. Ours says not to be used by children under 6 years of age. And if anyone ingests any more than is necessary to brush one's teeth. To call the poison center immediately! Do the words low level poisoning mean anything to us at all? 

     I would love to hear from other chemically sensitive people.We must band together to bring notice to this chemical poisoning issue in general. And the devastating impact that it is having on men,women, and children of all ages. My E-mail address is daddyniowa@aol.com

Rental apartment treated for fleas, age 8 months, developed thrush immediately, and her sensitivities to milk and wheat (and much more) became very pronounced.

Missing much school with repeated ear infections, fevers, and is sometimes unable to concentrate. She has multiple sensitivities to cleaning products, synthetics, prescription drugs etc.

Mother is a smoker, from a chemically sensitive, addiction prone family, and who was exposed to PBB and hospitalized for it in childhood.

E-mail Desi