MCS Survivors

NIH Report

Info on Odors

Info and Help

Housing Info

Chemical
Injury

I have never been a really healthy person. As an infant, I would keep my parents up all night with my screaming--more so than a "normal" infant. For as long as I can remember I've suffered from sinus headaches and severe migraine. I also remember walking to school when I was in the 3rd through the 5th grades and arriving in the classroom with hives on my hands (especially when the weather was cold and/or wet) so bad that my swollen fingers would not hold a pencil. Just before I entered the first grade I must have complained extensively about the headaches because my mother took me to the doctor to find out if anything wrong. His diagnosis?? My waist-long hair was too heavy and causing the headaches. Treatment?? Cut it!

As I got older, the migraines became worse, both in intensity and frequency. I began to notice that things like 2nd hand cigarette smoke, perfumes, pesticide odors, etc. aggravated this problem. But still, for the most part, I was able to lead a pretty much average life.

When my son was born in 1979, I was very sick. Labor and delivery were an absolute nightmare and I had huge amounts and varieties of drugs pumped into my system day and night for nearly 2 weeks. My condition seemed to deteriorate from that point on. Not only did I have a constant headache, the migraine "attacks" were much more frequent, lasted longer and were extremely intense. They were so intense that I would be unable to care for my infant son. After a day at the mall or being stuck in traffic on I95 outside of Washington DC all day, I would be so sick late in the day that I could do nothing but lie on the bathroom floor. Some of the floor waxes, paints and adhesives used in the stores would cause me to have an immediate and severe case of diarrhea. Exhaust fumes from cars, oil furnaces, natural gas appliances caused violent mood swings and headache. Cigarette smoke made every inch of exposed skin itch unbearably, made my eyes swell and burn, gave me an immediate and intense headache with nausea and vomiting and made the inside of my nose and ears hurt. Many perfumes and colognes, soaps and shampoos, air and carpet fresheners, fabric softeners and laundry detergents, "outgassing" building products such as carpets, particle board and latex paints, even inks from ballpoint pens made me hyper and nervous and eventually lead to a severe migraine. Handling paper of any kind, plastic grocery or shopping bags, latex and other synthetic or chemically processed items caused hives and intense itching on my hands and arms. Lawn and garden chemicals (including chemical fertilizers) cause me to have some sort of nervous system issues where my muscles tense and I feel as if I were very close to having a seizure, and of course the residual effects are migraine, nausea and intestinal problems over the next few days. Even short exposures to these things caused severe reactions that lasted from 24-72 hours. Let me just point out that it is VERY DIFFICULT to avoid exposure to chemicals in the environment for 24-72 hours. The reactions overlapped and I was totally debilitated most of the time.

In the late 70's and early 80's (and even at the present to a very large extent) MCS was not a known condition. Chemical injury was swept under the rug by corporations and the federal government to protect their own collective a**es. It was very nearly impossible to get any kind of help from a medical professional. I was called a hypochondriac, just plain crazy, told I was wanting attention, sometimes before the doctor had seen me (and that INCLUDED a so-called Environmental Illness Specialist at the university I worked for) even once!! I was totally frustrated in my efforts to get relief.

In final desperation, my husband and I decided to radically change our lifestyle and diet. We sold most of what we had, bought a small, repossessed mobile home that had wood siding (so it would breathe) and was all electric, parked it way out in the country and opened all the doors and windows and "weathered" the house for about 5 weeks before we moved in. We did away with ALL household chemicals. You may say "well that sounds easy" but believe me... it is nearly impossible! We stopped using commercially made soaps and shampoos and bought handmade, unscented soaps made from goats milk and olive oil. I began using baking soda and vinegar as my ONLY cleaning products. We stopped using plastic containers for foods and bought NOTHING that was packaged in plastics. We stopped wearing leather shoes (soooo many chemicals used in processing) and clothing made from synthetic fabrics. We used no pesticides but instead used boric acid (which actually works BETTER than commercial pesticides of any kind) and diatomaceous earth to control insects.

Again, at that time there were no good tests for food allergies. Doctors were extremely uncooperative (I had one genius tell me that I couldn't be allergic to foods because food was all natural. What the heck does she think pollen is??) and totally unhelpful. I put myself on what is known as an elimination diet. EVERYTHING is eliminated from the diet but plain rice cooked in distilled water... and I do mean everything. The rice is eaten with no other foods and no drinks other than filtered water. From there, a new food was added every 3 days. Several, including corn, soy and tomatoes, caused immediate and severe reactions. Others took from 3-36 hours to start offending. Those included eggs, beef (hello it's corn and soy fed!), orange juice, vanillan (artificial vanilla flavoring) and foods containing blue or red dyes. Think about it... most prepackaged foods, bakery goods, soft drinks, candies, breads, cheeses, lunchmeats, etc. contain corn or soy! It is nearly impossible to totally eliminate corn and/or soy from one's diet.

Once this was accomplished, I began to feel some better. Of course, every time I went out in public I would have a relapse. Stores, malls, restaurants etc. all still permitted smoking at that time. I couldn't go anywhere without being extremely sick by the time I got home. It was decided that I would stay home for at least 3 months and let my immune system heal. My husband did all the shopping, all the errands, EVERYTHING for those three months. He would have to shower and change his clothes before I could even get near him. We actually ended up doing this for a full year. By the end of the year I was doing well enough to go back to school. I still ended up sick many days but it was not nearly as bad as it had been.

Because I was lonely and bored being by myself so much, I spent a lot of time online chatting and emailing. I met a gentleman online who worked for a major university as a computer helpdesk technician. When he found out that I was a Macintosh expert, he asked me to come to Atlanta and apply for a job in the helpdesk call center. The university used a LOT of Macs but the helpdesk had no Mac techs. I did eventually agree and went to Atlanta to interview and then to take the job. I worried about the environment but it had seemed fairly "safe" when I had visited.

Well, as it turned out, the environment was not so safe after all. Spray cleaners were used so much that you could sometimes actually feel the mist in the air and the sticky residue on your skin. One woman wore a CLOUD of heavy perfume every day. An air freshener was ordered for the restroom. People just do NOT understand when you complain about something as ordinary as cologne or Windex! My boss labeled me a "whiner" and pretty much ignored my problem. One of the days I had to leave around noon due to migraine, I talked to him again. I explained as best I could about the migraines and the mood swings and the anger and the nervousness. FINALLY he understood! He sent me to the disabilities office (they were not any help AT ALL) and he bought me a huge HEPA air purifier for my cubicle. THAT HELPED!!!!! He met with the other members of the team and had limited success in explaining the situation to them. But the small changes (getting rid of the spray cleaners and the air/carpet fresheners) made a BIG difference.

Unfortunately though, the combined exposure to so many chemicals once again took its toll. I again had a constant headache and my ears rang (please see my page on Meniere's Disease) non-stop. About a year before I left the job, the call center was moved from one building on campus to another. The new call center was just that... NEW! It had new carpeting, new adhesives, new paint, new desks made of particle board, new chairs with synthetic fabrics and it had a stairway leading down to the smoking area. When I got to the point that I was missing more time than I was working, the new manager decided that I was not contributing enough to the team and I was fired. Because I could not "prove" my disability, I had no recourse, although I did win my appeal for unemployment.

I am still fighting for my disability. I have a firm diagnosis of Meniere's Disease and chronic asthma, and I have supporting evidence of MCS but Social Security keeps turning me down flat. I work from home, taking calls for several commercial call centers, I do a bit of sewing and paint a few portraits. I do not make enough to live on. I will continue to fight with SS. Without their paperwork and approval, I can't get subsidized housing, food stamps or any kind of assistance. I lost my medical insurance when I lost my job so for the last 3 years all of my medical expenses have been out-of-pocket. This is one problem the Social Security office points to--no ongoing medical care but I just can't afford it. I stay on my medications and have been on them for several years now, but apparently that isn't good enough for them. I started building this website to showcase my art and needlework and to hopefully learn to make some money through affiliate programs, etc. Your help there would be greatly appreciated. I have included links to books on MCS, environmental illness, CFS/FM and resources for same in hopes that the information will help someone. If you decide to purchase books and other resources, please use the links I have provided. I would greatly appreciate it.

The greatest advantage to working at home, of course, is that I can go for weeks without being exposed to a lot of chemicals/perfumes/cigarette smoke. I am doing much better for the time being. The medical community is becoming more aware and more knowledgeable on this issue. New tests are being developed that help pinpoint chemical injury and related issues. I intend to have more tests run and am hopeful that this will eventually lead to improvement or recovery or at least my qualifying for disability.

My purpose for sharing my experiences is to make people aware, not only of my "invisible disability" but also that the many chemicals we use every day of our lives are harmful. They are harmful not only on a large global scale, but they are harmful to individuals, especially young children. Not only cleaning products, lawn chemicals and pesticides are dangerous. Potpourri and scented candles are very dangerous to developing lungs and immune systems. We literally poison ourselves and our children a little (or a LOT) every day.

There is help. There is hope. I have provided some links to support groups and information sites. I hope you will find them beneficial.
b