Do You Have Chemical Sensitivity?, Share your stories about reactions to additives, pesticides... Options

[Craig Minowa]

DO YOU HAVE CHEMICAL SENSITIVITIES?
YOUR STORY IS NEEDED IN OCA'S WEB FORUM
Have you or someone you know had experiences with chemical sensitivities? The Organic Consumers Association is looking to collect stories from thousands of citizens regarding such sensitivities related to foods, pesticides, additives, genetically engineered ingredients, and any other consumer-related product. Simply register on this forum so we can collect these stories. These anonymous stories will be a valuable tool for helping us win support from policy-makers and industry decision-makers in further protecting consumer health.

[inthesouth]

I know that I have reactions to MSG. Massive headaches, sensitivity to light, huge hives, and an inability to sleep. In 2001 I had to go to the doctor for treatment. As we talked he asked me where I eat and what I eat. From there we pinned it down to a salad bar. I remember seeing one of the employees at this restaurant pouring a crystal-like substance into one of the containers of salad dressing. I did use that particular salad dressing during that visit. That explained why every time I ate certain foods I had this allergic reaction.

[Flips]

I have suffered from MCS (multi-chemical sensitivity) for over 30 years----
we now live in the country where I maintain a "Safe home" as chemical & scent free as possible. We allow hardly any one into our home other than our married daughter & her family who are apart of helping us maintain a chemical free & scent free & smoke free home!
I use air purifiers & water purifiers & an oxygen generator!
I watch very closely what I eat & drink & breathe.
I am a vegetarian & I eat food that I try to avoid all chemicals & preservatives. I don't use dairy products other than some cheese products.
I take no chemical drugs & I use vitamins & mineral & whole food products to maintain my health!
I am able to leave my "safe home" at times-----but when I do I know I'll be exposed to some form of chemicals & scented products-----& I have to maintain a "safe home" for my body to rebuild!
Over the years I have gotten worse & about three years ago I almost died---I had to sell my business & quit working for the public & I had owned businesses & worked for the public for over 40 years & I am regaining my health back to be able to maintain as "normal" a life style as possible for myself--------
I help others who are learning that chemicals & scented products are the cause of their health problems & help them to start & maintain "safe homes" as chemical & scent free as possible!
I use vinegar & bakeing soda to clean with.
So many have health problems & have never tied it to the chemicals that this world seems to think it can't function with out- & everything has to be scented!!!!!!!!!
I would be happy to try to help any one else ----who has gone from doctor to doctor to doctor trying to find the cause of their health problems---tests & tests & tests----& then only wanting to give them more chemicals in the form of prescription drugs!!!!!!!
I had a Public Radio Health Reporter contact me this past week & ask if I would give an interview about my MCS problems for his Health program that is broadcast to several other radio stations----etc/etc/---
I said if you don't try to make fun of me & other who suffer from MCS & will let me give HOPE to those who suffer from MCS- & the world seems to want to make fun of us or say it is in our heads-or etc/etc/etc--after several e-mails from him------he said Quote : Thank you very much for your willingness to participate if I proceed with a story on MCS. I have been doing a substantial amount of research, and have found that it remains a highly controversial diagnosis. That doesn't mean it doesn't exist, but that it certainly is not understood by the scientific community. " end of quote (IMG:http://organicconsumers.org/forum/style_emoticons/default/huh.gif) (IMG:http://organicconsumers.org/forum/style_emoticons/default/mellow.gif)
Well when everyone in the world thinks they have to use chemicals & everything has to be scented & the doctors only write out prescriptions for more chemicals & all of that means $$$$$$$$$$$$$$$$$$$ (IMG:http://organicconsumers.org/forum/style_emoticons/default/ohmy.gif)
Why do we wonder why MCS is poo--poo--- (IMG:http://organicconsumers.org/forum/style_emoticons/default/angry.gif) -& we are told it is in our heads!!!!!!! (IMG:http://organicconsumers.org/forum/style_emoticons/default/angry.gif)
God gave us all brains-----& if you have health problems----& you cut out the chemicals & scented products & watch what you eat & drink & breathe- & you get better------it doesn't take a rocket scientist to prove to your self-what the problems are that are causing your health problems!!!! (IMG:http://organicconsumers.org/forum/style_emoticons/default/smile.gif)
I would love to hear from others who maintain safe homes--- & suffer from MCS------

[WonderY]

Oh my, do I ever! Pesticides, Preservatives, etc. I unfortunately have to live off "chemical" medication. I use vinegar/baking soda for everything from laundry to air cleaners. Change my filter every 2 weeks, don't use any candles, etc. Changed out my carpet, draps for the more calm decor of wooden floors and blinds. Mainly use vinegar and corn meal for bug control in yard. I had to drop my yard personel, for even the residue from them cutting a prior yard put the pesticide chemicals in my yard to the point I couldn't even walk in my grass without getting major blisters on my feet. Soy is the biggest problem right now.... they even add it to Tuna! "It's healthy" for a lot of people, but it's just as dangerous as peanuts, but yet they are adding it to EVERYTHING! Since I've changed over to Organic/Natural fruits and vegetables (what limited items I can have) and Natural/Organic meats, they have improved, but I'm still on my medications. I can even pick up a fruit/vegetable item within the grocery store and automatically have a hand rash from the "chemical" they add to the "enhancing water" they spray on them to make them shiny under the lights. I can't eat fresh fish or seafood, for the "enhanced water" they use to store it in. Yes, I know I'm one in a million, due to the severity of mine. But I can say up till I was 36 I had no known allergies what so ever! So, this makes me believe, we've doubled if not tripled our usage in the pesticide/preservatives, and now it's starting to catch up to us all. I don't dare even to think of eating out, for no Owner, Manager, Chef can ever tell me what exactly they are serving so I don't take the risk.

And those out there ask why Green/Organic/Natural.... I'm a walking billboard everyday!

[jvirden]

ASPARTAME IS BAD FOR US!!!! I had terrible GI discomfort daily for nearly 2 years and even had a colonoscopy, but instantly after discontinuing using Aspartame to sweeten my ice tea, ALL of my problems disappeared. I was miserable for so long until someone warned me about this dangerous chemical.

[Flips]

Oh my, do I ever! Pesticides, Preservatives, etc. I unfortunately have to live off "chemical" medication. I use vinegar/baking soda for everything from laundry to air cleaners. Change my filter every 2 weeks, don't use any candles, etc. Changed out my carpet, draps for the more calm decor of wooden floors and blinds. Mainly use vinegar and corn meal for bug control in yard. I had to drop my yard personel, for even the residue from them cutting a prior yard put the pesticide chemicals in my yard to the point I couldn't even walk in my grass without getting major blisters on my feet. Soy is the biggest problem right now.... they even add it to Tuna! "It's healthy" for a lot of people, but it's just as dangerous as peanuts, but yet they are adding it to EVERYTHING! Since I've changed over to Organic/Natural fruits and vegetables (what limited items I can have) and Natural/Organic meats, they have improved, but I'm still on my medications. I can even pick up a fruit/vegetable item within the grocery store and automatically have a hand rash from the "chemical" they add to the "enhancing water" they spray on them to make them shiny under the lights. I can't eat fresh fish or seafood, for the "enhanced water" they use to store it in. Yes, I know I'm one in a million, due to the severity of mine. But I can say up till I was 36 I had no known allergies what so ever! So, this makes me believe, we've doubled if not tripled our usage in the pesticide/preservatives, and now it's starting to catch up to us all. I don't dare even to think of eating out, for no Owner, Manager, Chef can ever tell me what exactly they are serving so I don't take the risk.

And those out there ask why Green/Organic/Natural.... I'm a walking billboard everyday!

================================================================================

I am fortunate enough to be able to raise most of the fruits & veggies we eat-or our daughter & her family raise & share with us also--------all chemical free----I freeze as much as I can for our winter use.
We have a pond on our land & no chemicals are used around it--& we catch a lot of fish out of our pond & even through I eat no other meat- I do eat fish out of our own pond!
We bought an older home (over 100 years old) in the country--all of the farm land around us is in CRP so no farming or chemicals are being used--& in our home all the carpets & remodeling that had been done has been done several years ago & everything has outgassed!
We have an MCS "safe home" for sale in a very small town in Kansas--------but most people don't even understand what that means------- (IMG:http://organicconsumers.org/forum/style_emoticons/default/rolleyes.gif)

[Erma26]

I know that I have reactions to MSG. Massive headaches, sensitivity to light, huge hives, and an inability to sleep. In 2001 I had to go to the doctor for treatment. As we talked he asked me where I eat and what I eat. From there we pinned it down to a salad bar. I remember seeing one of the employees at this restaurant pouring a crystal-like substance into one of the containers of salad dressing. I did use that particular salad dressing during that visit. That explained why every time I ate certain foods I had this allergic reaction.

I had developed knee pain when I was a young teenager which I and a lot of people attributed to sports. Over the years, I am 26 now, I became more educated and did some research and started to hear about MSG. Well, I looked up the symptoms that possibly occurred with MSG use and joint pain was one of them. A light bulb went off in my head. So, I started reading labels and avoiding anything with MSG as much as possible and it has been about a year now with no knee pain. I am so happy!

[Erma26]

ASPARTAME IS BAD FOR US!!!! I had terrible GI discomfort daily for nearly 2 years and even had a colonoscopy, but instantly after discontinuing using Aspartame to sweeten my ice tea, ALL of my problems disappeared. I was miserable for so long until someone warned me about this dangerous chemical.

Yeah, I stopped using that too. I heard that once it reaches a certain temperature that it can cause Parkinsons type reactions. Don't know if it is true but I would not doubt it.

[b-lovely]

For me it's been lawn fertilizers since I was young. A neighbor contracted his lawn maintenance to
Chem Lawn and after an application (back then there were no flags put into the yards) we were playing
kick ball and within 15 minutes my hands, feel cheeks and any other area I had touched was swollen
and I was having trouble breathing.. by the time I got home I could barely breathe - an ambulance came
and gave me a shot of an antihistimine. Ever since, I can't even be in my back yard if a neighbor has had
it sprayed - or walk down the aisle in a garden store; my throat immediately closes - I'm certain it's my
own body raising it's defense systems - I saw a scientist discuss this very topic at our public school as
we were arguing for the district to stop using chemicals. He said that the government approves the
chemicals individually within these substances, yet cannot give "feedback" on what those chemicals do
when made into a compound... how they react with each other cannot be determined. Hmmmm.
I remember being very young and learning what happens when bleach is added to ammonia... why
can't these scientists figure out that this stuff is killing people, trees, birds, our water supply... and why
are those yard signs so small and white? shouldn't they be HUGE and BLAZE ORANGE with Mr. Yuk on them?

[Flips]

In our area all the small towns fog for mosquitoes--------they spray a fog of chemicals all over the small towns for mosquitoes---------now talk about what those chemcials sprayed all over the town do to people!!!!

And when we lived in a small town --I asked them to NOT spray in front of our house & to let me know when they were spraying the town--

They said well we have to spray what if people are bitten by mosquitoes????
Well Duh----what were they doing to EVERYONE WITH ALL THOSE CHEMICALS THEY WERE SPRAYING ALL OVER THE TOWN!!!!!!!

Makes so much sense to me!!!!!!!! Forget about the mosquitoes we will kill everyone with a FOG OF CHEMICALS!!!!!! (IMG:http://organicconsumers.org/forum/style_emoticons/default/angry.gif)

[CarolinePC]

I began becoming seriously Chemical Sensitive about 3 years ago. I believe it's due to a build-up of chemicals in my body over the years. (I'm now 56). In my 40s, I was diagnosed with Fibromyalgia. Slowly, additional diagonises have been added to this. I have problems even breathing in a laundromat. (Did you know chlorinated water heated makes chlorine gas escape...add bleach and detergent to this!) If a waitress wipes a table with a rag with/or sprays disinfectant or bleach near me, I go into an asthma attack. Before "going natural" and getting all the chemicals out of my home I was using a nebulizer 4 or 5 times a day. Emergency inhalers don't work most of the time. After chemicals were removed and an air purifier added, I no longer need the nebulizer. If my lungs feel tight and breathing is hard, I lite a Melaleuca de Fleur candle.

Two years ago I had gotten where I was doing very well. THEN...my husband painted the fence with Super Deck, at my request. The fumes came in the house. Immediately I began having breathing problems. By the next day my heart was bothering me. When we realized the cause, we shut the house up. It was too late. THe damage was done. I now have Diastolic Heart Failure and more breathing problems that had stopped six months before when I began taking a good regimine of vitamins and supplements. Only now am I beginning to again feel relief.

Now I know, I must stay away from all synthetic chemicals. . . even those that never bothered me before might now set off both heart and lungs.

[Gwen]

I began becoming seriously Chemical Sensitive about 3 years ago. I believe it's due to a build-up of chemicals in my body over the years. (I'm now 56). In my 40s, I was diagnosed with Fibromyalgia. Slowly, additional diagonises have been added to this. I have problems even breathing in a laundromat. (Did you know chlorinated water heated makes chlorine gas escape...add bleach and detergent to this!) If a waitress wipes a table with a rag with/or sprays disinfectant or bleach near me, I go into an asthma attack. Before "going natural" and getting all the chemicals out of my home I was using a nebulizer 4 or 5 times a day. Emergency inhalers don't work most of the time. After chemicals were removed and an air purifier added, I no longer need the nebulizer. If my lungs feel tight and breathing is hard, I lite a Melaleuca de Fleur candle.

Two years ago I had gotten where I was doing very well. THEN...my husband painted the fence with Super Deck, at my request. The fumes came in the house. Immediately I began having breathing problems. By the next day my heart was bothering me. When we realized the cause, we shut the house up. It was too late. THe damage was done. I now have Diastolic Heart Failure and more breathing problems that had stopped six months before when I began taking a good regimine of vitamins and supplements. Only now am I beginning to again feel relief.

Now I know, I must stay away from all synthetic chemicals. . . even those that never bothered me before might now set off both heart and lungs.

[Merry]

I was subjected to a year of chemotherapy in 1996 for colon cancer. I was given two acidifying drugs every week, in spite of my urine being critically acidic from the beginning. At the end of the year I was a basket case, with post traumatic stress, fibromyalgia, chronic fatigue and raging emotions.

From the time I became sick, I used filtered water, organic food, clean cleaners, and the best supplements but still I was not getting well. After a week's vacation with my country cousins, I realized it was my home keeping me sick. We talked about moving but where do you go? We love our older midtown home and rural life has its own pollutions.

Since then we have removed all carpets and plugged 3 petro carbo gas leaks (carbon monoxide, natural gas and freon). I am also electronically sensitive and it is a slow process rewiring, as everything must be encased in conduit. We hope it will be enough but there are two dry cleaners within 3 blocks so who knows?

My home makes me sick but I am sicker leaving it and often hold my breath in public. I get sickest visiting my parents' small town, where cheap food reigns and every church dinner is packed with preservatives. I always come home a maniac.

We have spent thousands and I cannot work but there is no help from Social Security, especially since it was the chemotherapy that kicked it off and the government will never acknowledge that the cancer industry might be hurting people.

[margie]

I have had digestive problems all of my life (chronic constipation) but it wasn't until perimenopause that I became aware of sensitivities. It started with coffee. It began to taste bad to me (first clue) and if I ignored this message and drank it anyway, I would become ravenously hungry, fatigued, and sleepy. Shortly after that I would develop hives. Not much later, I became hypersensitive to diesel exhaust. It got to the point that I would have to pull over if I was behind a diesel burning vehicle to get more space between us. That ended my love affair with my convertible. Gradually, over the years, I found that I could no longer tolerate cows milk, wheat, and corn. I should add that I noticed many years ago that highly processed foods like pizza, cheetos and ice cream gave me horrible "sick" nightmares as a young adult. I would be interested in learning if anyone else has experienced this. I would love to point out to my family that I am not the only one! All of the above mentioned foods led to dysbiosis and/or leaky gut syndrome. After consumption of the aforementioned foods, I would become extremely bloated and look nine months pregnant. With time, I also developed an anxiety related to the consumption of these foods that is hard to describe--it was a feeling of "impending doom" and gut centered nervousness. I Recently started NAET therapy and am hopeful that I will be able to be less paranoid about what I eat. I don't want the coffee, the processed food and the cows milk, but a slice of whole grain bread once in awhile sure would be nice...
By the way, I was fully vaccinated as a child, bottle fed and raised on white bread and canned vegetables.

[Jeannika]

We had an open ditch behind our house. Every year the city of Santa Ana drove what looked like a water truck along side the ditch, to spray the ground with pesticides. It smelled for weeks afterward, and everything eventually turned this ugly brown orange and died.

When I was four years old (1959) I was literally soaked with pesticides, while playing in my backyard. I watched the truck driving up towards my house. I even waved to the driver as he drove past my backyard. At the time, I had no clue that my life had been forever altered. I only knew it was warm out, I'd just gotten VERY wet, and my mother was VERY upset about that fact. She told me to stay outside until my clothes were dry. An hour later, when I was dry, she took me in and gave me a bath. My life has never been the same since.

I was also born severe with food and chemical allergies, (including Celiac disease) which were not diagnosed or treated until I was well into my 40s. Instead, my mother labeled me a hysteric and a hypochondriac. Because my Celiac disease went untreated, I developed chronic diarrhea and anemia, from which I very nearly died. My spine, legs and feet are misshapen.

When I went on to develop cardiac and neurological symptoms (age 9), my mother force medicated me with Valium and other Benzodiazepines. I was never given an EKG or any blood tests. I grew up with few friends, believing I was nuts.

I managed to work my way through school, and made a life for myself. The problem was, I got sick a lot. So I'd work like dog on good days, and work as hard as I could on bad. I ended up in the hospital more times than I can count. I also ended up having my work published internationally and winning all sorts of awards. Unfortunately, my health never improved.

In 1997 I was diagnosed with Celiac disease, changed my diet and a lifetime of chronic diarrhea and hypoglycemia ended. A good friend suggested I might suffer from MCS, something I'd never heard of, and very few doctors take seriously. I struggled to get my family to understand the fact that pesticides and certain chemicals made me horribly ill.

In 2002, I had just returned home from vacation. I was resting when the gardener arrived and started spraying our front yard with pesticide, something I'd always told him NOT to do. All the windows and all the doors were open, and the stuff was coming into the house.

It turned out my father-in-law had given him the go-ahead to spray while we were on vacation. Fortunately or unfortunately as the case may be, it rained the entire time we were away. So he was spraying that day. Not knowing he'd called for weed spraying, I begged my father-in-law to stop the gardener. He refused, so I ran out the door and demanded the gardener stop. I don't know if I freaked him out or what, but he aimed his sprayer at me and told me to go away.

Like an idiot, I stood my ground and insisted he stop. I was drenched before he finally quit and went away. Short of breath, shaking, not knowing what to do, I told my father-in-law what had just transpired. He didn't believe me. So here I was, for the second time in my life, being pelted with pesticides.

My life has been a nightmare since. My menstrual periods stopped for three years afterward, and I bloated up like a balloon. I physically looked like I was pregnant. On the rare occasions I've had menstrual periods, I experienced hemorrhagic bleeding.

I began experiencing difficulty walking, eventually needing a cane or walker to get around. In 2003 I could barely lift my arms, let alone walk. I fell constantly and often fainted.

After ANY kind of exposure to cologne or pesticide, I'd pass so much urine my electrolytes dropped to dangerously low levels. I was in the hospital so often for re-hydration that they began hooking me up to IVs in ER and then discharging me home.

When test after test came back inconclusive, I learned a number of doctors assumed I was abusing diuretics to make myself sick.

In 2004 I was placed in a CCU room which had just been treated with some sort of industrial cleaner. The floor, night table, and portions of my bed were still wet. The smell was so intense, it made my head spin and eyes were burn. My heart rate remained at around 180 the entire time I was there.

24 hours after my admit, I was told the hospital wasn't a safe environment for me, that what I had wasn't treatable, and to “go home and learn to live with it.” When I asked the doctor what he would do if he had MCS, he said he'd “give up, go home, crawl into bed and cry for a couple of months.” So, with a heart rate of 180, I went home to die.

Eventually, through a friend, I learned new ways of dealing with all this. I eat only organic foods, cook most of what I eat from scratch, and avoid fragrances, pesticides and industrial cleaners. I started working out (basically walking and swimming) on good days and was doing a lot better.

In December of 2006, we learned our home had termites. I spent months look for natural alternatives to pesticide treatments. In late March 2007, we opted for an earth friendly borate based solution. Because all we had ordered was borate foam in the attic, we stayed home on treatment day. Because the central air had to be off, all the doors and windows were open. Disaster hit when they sprayed the exterior of the house with a composite of some horribly toxic chemicals.

This time both my father-in-law and husband became ill as well. I have again lost much of my mobility and I've put on some 30 pounds.

I'm trying to remain philosophical about the entire situation. I wish life weren't so damned complicated, that I could go to the store without being assaulted by the out gassing of pesticides, solvents, cleaners and colognes. I wish I didn't have fear being sprayed by sample colognes at the mall. I wish people knew how horribly ill the cigarettes they smoke or cologne they wear makes people like me.

I wish I didn't have to live such an isolated life. I wish I could go to a restaurant and simply order anything on the menu … go to a movie theatre … walk in a park … fly in a plane. Few people know how isolated and alone you can feel when you're as chemically sensitive as I am. I'm sick of hearing “but you look so good”, when I feel like shit.

When you've got MCS you quickly discover that friends and family often grow weary of your constantly being ill, nearly dying again and again, needing special masks, special cleaners, special food, special clothing, not getting better, hearing complaints about pesticides and processed foods, etc., etc., etc. … often times they tune you out and move on.

If I don't complain or say anything, people think I'm doing OK. They don’t realize I'm tired of feeling this way, don't like complaining and hate being ill. In many ways it was much easier for me to believe I was a mentally ill. In those days, hope was always one prescription around the corner.

My lifeline these days is music, which I play and compose whenever I'm able.

Thanks for reading this, and letting me vent ... I know it was long.

Love and Care,
Jeannika

[Bonita Poulin]

I became disabled by MCS and CFS in Nov/99, after working for over 10 years in a chemical factory making laundry detergents and fabric softener sheets. For the first year I could not go anywhere without wearing a mask and I would still get nauseous and have to vomit after a few minutes in all places of business, private homes etc. The only place I felt well was in my chemical free home.
Since that time I have improved somewhat after years of treatments to detox and eliminate allergies and sensitivities. Now I no longer wear a mask and can handle short exposures from 5 minutes to an hour in most environments before I begin to feel sick. These days my reactions include foggy thinking, memory problems, headache, incontinence, left sided weakness (partial paralysis) i.e. dragging left foot and useless left hand, dizziness, nausea, extreme fatigue.
Exposures to cleaning chemicals, air fresheners, scented personal care products, scented detergents and fabric softeners and perfumes on people, fresh paint, mold, diesel exhaust fumes, pesticides, synthetic food additives, etc. make going into public places very difficult. Using public washrooms is particularly difficult for me as they almost always contain a sickening air freshener.
Even hospitals are problematic. They are making some improvement in having a perfume-free policy but that is still not enforced very well in many places. The antibacterial lotions at the entrances of all hospitals also make me sick, so not only can I not use them, I have to hold my breath and walk through these areas as quickly as possible to try to avoid the chemicals. Of course, all the medical personnel use these products frequently, which also adds to my distress.
Trying to find chemical-free foods is also a challenge. I applaud the efforts of some grocery stores to provide a good selection for fresh organic produce but I wish they would also sell organic meat, fish and poultry, as these can be very hard to find. Thank goodness for the local farmer's market!
Financially, this illness is also hard to deal with. I need to eat organically and take many vitamins and supplements, which can get quite expensive so as a result I don’t do what I know I should. I have been fighting for over 5 years for Workers Compensation benefits because my illness started due to exposures at work in a chemical factory. It took me several years and attempts just to get a Canada Pension Plan disability pension, which is meager and includes no health care what so ever. So as well as having a very small income, I must pay for everything out of pocket as I cannot afford to buy health care. OHIP is almost useless to me as none of the helpful treatments I need are covered nor are many of the tests my doctor takes.
Drug stores are another big problem because of the strong perfume smells inside. We are forced to walk through all this smelly crap and suffer from the exposures in order to get to the pharmacy, which is always at the back of the stores, to pick up our prescriptions. After I get home from the drug store and many other public places, I have to shower and change my clothes because the smells they have picked up make me nauseous if I continue to wear them.
We moved to a safer area with better air quality two years ago in hopes of improving my health. It took several months to find a new family doctor and I am not at all pleased with him. He does not seem to believe the things I tell him and I even caught him rolling his eyes when I was telling him of my symptoms. This would not be the case if he had had some training in environmental medicine. Instead all he seems to want to do is write up prescriptions when I cannot tolerate most drugs. Pharmaceutical interests have way too much influence over medical training!
I have had to give up most of the things in life that I loved including my job, my hobbies, my horses, friends, family gatherings, going out to public places like concerts, movies etc. If there was ever a natural disaster, where I would have to leave home, I doubt that I would be able to tolerate staying in a shelter as they are not set up to accommodate people with chemical sensitivities. I cannot stay in the homes of friends and relatives either because of all the chemical contamination. Life with MCS sucks!
Bonita Poulin

Update: Feb 2009
My health continued to deteriorate despite living in a safe area in a safe chemical-free house and eating organic foods. I am to the point now that I can hardly walk or even stand for long and my left side partial paralysis keeps getting slowly worse. The good news is I finally made sense of it all! I recently discovered I have a longstanding case of Lyme Disease and co-infections (Bartonella) which are the cause of the continuing nerve damage and partial paralysis. These opportunistic infections took advantage of my poor immune status and have hopped aboard for a ride. I have done alot of research and have decided to get rid of my Lyme and co-infections with a Rife machine, since I don't want to take all the drugs that may not work anyway but will cause additional problems. Many Lymies are having great success with Rifing. My Doug Coil rife machine is almost complete so I should be able to start using it in a few more weeks. Many of my Environmental doctor's MCS patients are showing positive on Igenex Lyme tests so if you aren't getting any better with avoidance and detoxing it would be worth looking into!
Take care.
Bonita Poulin

Canadian Coordinator
GLOBAL RECOGNITION CAMPAIGN
Multiple Chemical Sensitivity
and other Chemically Induced Illnesses, Diseases & Injury
affecting civilians and military personnel
www.mcs-global.org
More coordinators needed!

[Karen]

My husband and I both have stories!
I was poisoned by formaldehyde at the age of 13 along with my whole family in 1980. It caused multiple chemical sensitivities in the whole family. At the age of 17 I was in the path of a farmer spraying herbicides and nearly died. After that I was told by specialists that I would need to live in a "bubble" the rest of my life; I was allergic to the 20th century. My parents built me a couple of safe rooms in a country house and I could rarely go out in public or have company. My parents raised most of our food organically because that was all I could eat without problems.
This caused my family to become very poor and I ended up on disability. However I refused to accept the sentence of living in a "bubble". With help from family and friends I worked hard to learn about every kind of alternative healing methods I could find. Gradually I got healthier and was able to begin to work and contribute to society. I am now happily married and work out of my home a few hours per week as a Foot Reflexologist. My Doctors are still helping clean my body of all the petroleum products and heavy metals in my body. I am in constant pain and always tired. The good news is that I am more tolerant of chemicals now as I get healthier. The hard part is that I still cannot tolerate much food that is not organic.

My husband was having troubles with his neck and back hurting and his hands going numb. He was told he might have to find another line of work. A friend told us about MSG poisoning and after we cut out MSG he was doing much better. However, we found that free glutamates are related to MSG and also cause him problems and they are harder to find in foods. He cannot eat anything that is not organic and even some organic products have ingredients that contain free glutamates. I look at the labels of all the processed foods he eats and call the company to verify how the ingredients are made. Usually, "natural flavoring" has free glutamates in it. If it comes from a flavoring company and this company says that the ingredients in the flavoring are proprietary, we have found that it always causes him to have a severe reaction. The scary part is that almost all meat is dangerous for him. More and more the meat has a solution added and the solution always has free glutamates in it. Basicallly, I have to buy his food from the farmer and cook all of his food from scratch and he cannot eat out ANYWHERE! Luckily, I have also found that I am healthier if I also stay away from all the hidden free glutamates!

Karen Lucke

[haristar]

In 2001, I joined Weight Watchers and learned all about the "great" (IMG:http://organicconsumers.org/forum/style_emoticons/default/rolleyes.gif) real food substitutes. I let myself get caught up in a lot of foods that I knew couldn't be good for me, but I wanted to lose weight with whatever support the organization offered. So, I went with the flow.

I quickly learned to rely on Splenda (sucralose), falsely thinking that it was safe compared to aspartame. I used Splenda in anything I wanted sweetened--hot, cold, cooked, uncooked--and continued to do so for three years.

I have mostly been a very healthy person, but in 2004, I began to wonder if I was developing arthritis, because I was experiencing severe joint pain throughout my body. At the age of 51 and being menopausal, I also thought I might chalk it up to changing hormones. So, I tried different approaches to relief. By then, I was already learning about herbal remedies and organic living and had given up most bad food choices. I was on a path toward alternative health practices and avoided synthetic drugs and standard medical care. Nothing I did seemed to stop my pain. Exercise always made it worse, and I awoke every morning feeling what I imagine to be how one might experience being run over by a large truck.

Through those months, I still had not given up my Splenda/sucralose, because I remained under the ignorant impression that it was safe. Why? Because I let myself believe the advertising: "made from sugar." To me, that translated into something non-chemical. Yes, I still had a lot to learn.

One day, I discovered a blog on the net in which someone discussed a vast list of health problems associated with Splenda and Equal, etc., so I researched further and tried my own test. I did so skeptically, but I was so miserable, I was ready to try anything. Within three days after eliminating all sucralose from my diet, my symptoms disappeared entirely! No more joint pain, and my energy level was greatly improved. I felt like a new woman! I was stunned to realize that something seemingly so innocent could have such an impact. I had mistakenly trusted those we should be able to trust, like so many people still do, and my health suffered horrendously. (IMG:http://organicconsumers.org/forum/style_emoticons/default/sad.gif)

Since then, I have become an organic food advocate, and I am ready to fight the chemical establishment for my right to eat, breathe, and live in total safety, and by my choice. Sad to say, we can no longer trust those who are supposed to be looking out for our health and well-being as a nation. They are now more interested in feeding their own greed and power than in taking care of their fellow human beings.

The world today is offering us some huge and very unpleasant challenges. But, if enough of us stand our ground in defense of the earth and its precious gifts, and remember our unbroken connection to everything, we will bring both the earth and ourselves back into balance. I offer great thanks to the Organic Consumers Association and all like organizations who are working tirelessly to make a healthy world possible. (IMG:http://organicconsumers.org/forum/style_emoticons/default/smile.gif)

[Flips]

I have owned my own businesses for over 40 years & I didn't pay myself a wage---as the money always went back into the business-or had my husband as sole owner of the business as that is what our business manager counceled us to do--so no way of trying to collect any benefits!!!!!!! (IMG:http://organicconsumers.org/forum/style_emoticons/default/tongue.gif)

I find it is good to read all your posts-----as I have experienced most all the problems most of you have posted about except the chemotherapy I have not had!

I'm 5'8" tall & for years I was less than 90 lbs & had constant diarrhea And could not keep food down------then when I went through the change of life-----the weight just kept going on & now I'm bloated all the time & I say-- I'm having a real "Toad day"-as I'm so bloated all the time!

I was an old cosmetologist---& owned my own salons for years--& worked for a hair coloring company on week ends for many years doing trade shows-----& changed the color of my hair as often as my underwear---well now I'm paying for it!!!!!!!! (IMG:http://organicconsumers.org/forum/style_emoticons/default/angry.gif)

Then I had an Image Consultant Company------& taught women corrective skin & hair care & makeup! (By the way do those who have MCS & still wear make up- do you realize you are absorbing something like 7 lbs of chemicals each year in skin care & make up!!!!!!!!)
Needless to say I don't use hair care products other than unscented shampoo & no skin care products & no make up of any kind--!!!!!! This last year I had chapped lips & I tried to use a product with bees wax---but it had to have had a chemical in it--as I couldn't eat or drink for 2 days as my lips were to swollen-then I was finally able to get a straw through my lips to take in liquid!

Someone spoke earlier about church suppers------we have not been able to attend a Church service in over 10 years-------we have had "HOME CHURCH" for 10 years-----we receive a tape of a service as my cousin is pastor of a church & sends us the tape each week & we have had our own church services for like I said over 10 years now-----I do bible studies over the Internet but I really miss being able to attend church with fellow believers!!! But everyone puts on tons of scented products to go to church----then they want to shake hands with you with the hands they put the scented products on them selves with or else they have on scented hand lotion!! Or heaven for bid they want to hug you & cover you with scented products enough you know you are going to die!!!!!!

It has been good reading posts from all of you-------as I know we all can relate to each others problems!!!!!!!
We have been there & done that & we are all wearing the same T-Shirt!!!! (IMG:http://organicconsumers.org/forum/style_emoticons/default/biggrin.gif)

Several years ago------I got so sick-------I had terrible panic attacks along with not being able to eat-----all the other symptoms that go with MCS----also------but worst of all I was sooooooooo sick I lost my sense of humor------I asked God if I could please regain my sense of humor ----before I died -as I didn't want to die with out a sense of humor------
How many of you cope with a sense of humor just to be able to make it!!!!!!

[doingmybest]

I do have chemical sensitivities. In 1988, when I was 19, I was home from college with mononucleosis. My parents had the outside of our house repeatedly sprayed with pesticides for carpenter ants. My room was in the basement. The smell of the spray was so strong in my room that I could taste it. At the time I didn't think anything of it, the spray was supposed to be safe for people, and it was outside of the house.

But since then I have had Chroinc Fatigue, Fibromyalgia, and countelss other health problems. I am very sensitive to many of the things people mention here; dryer sheets, scented candles, perfumes, almost anything scented, also paint, glue, pesticide and herbicides, gasolne, solvents. Exposure to these things make me feel like I might throw up. I have to get away from them. If I can stay away I'm ok.

I am on the state registry for people with chemical sensitivites. If places near my home are being sprayed with herbicides or pesticides I am notified by the business that does the spraying. Worth checking into for most of the other people who have responded to this question.