My MCS Story

History

I was in generally good health all through my developmental years.  I grew up on a dairy farm but had minimal exposure to farm chemicals.  I was active in 4-H and school band and did well academically.  I continued to be quite healthy during college and on into my work as hospital dietitian.

In my late 20s I moved to a historic district into a Victorian home that had been converted into three apartments.  It was a lovely second floor apartment in an interesting, diverse neighborhood. The neighborhood was transitional with the homes in various states of renovation/repair and disrepair.  While the house I lived in was fully renovated the house next door can only be described as a tenement house.  Unfortunately this tenement house which had multiple apartments was infested with cockroaches.  Whenever it got sprayed with pesticides the cockroaches would come over next door to our house.  Then my landlord would spray all of our apartments chasing them back over to the tenement house.  This happened over and over while I was living here with my being exposed to multiple sprayings.

A few years later I moved into my current home and away from the pesticide spraying.  But it wasn’t long after the pesticide exposures that I began developing occasional and recurring ovarian cysts.  For the most part they were just annoying causing rather vague GI symptoms including abdominal bloating, etc.  But one was suspicious for cancer by x ray which was kind of a scary but thankfully turned out not to be.  Another ruptured which can be serious but other than it was very painful I had no complications.  They never caused me to miss any work that I recall (unless it was for the ruptured cyst) and were just an annoyance for the most part but this went on for 15 years. It wasn’t until I saw my environmental medicine physician, after developing chemical sensitivity, that the problem was finally solved.  He said they were caused by a low progesterone level, put me on progesterone and I never had another one.  The reason I mention all of this is that I have since learned that there may be a link between pesticides and development of ovarian cysts.  This is because pesticides cause hormonal imbalances including a low progesterone!

These pesticide exposures during my late 20s were probably the worst exposures I’d had after getting out of college and starting work.  Over the years I did do some woodwork and furniture refinishing using some very toxic finish remover/stripper a few times and also did quite a bit of painting in my home.

Despite these exposures I never noticed any sensitivity to chemicals at all until my mid 30s.  For a little extra income I started cleaning the house of a lady physician who lived one street over from me.  I would spend a couple of hours of pretty intensive cleaning when I cleaned her house.  I began to notice that I would have a flu-like feeling for a few days after cleaning her house.  So eventually because of this I decided to quit but never really thought any more about it.  Never took any extra precautions after that in terms of trying to avoid toxic chemicals.  I still used regular cleaning chemicals, perfume, occasional herbicide, etc.  None of these things seemed to bother me.  It was only after cleaning the lady physician’s house and feeling fluish afterwards that I ever noticed anything.

Getting MCS

The summer of 1998 at age 43 I had a worsening of orthopedic injuries (ie rib and hip injuries) that had originated years earlier.  They became so severe that I had to take time off work in order to get physical therapy and chiropractic treatments and let the injuries heal. I had lost a lot of weight due to the injuries and also was not fully healed when I returned to work and continued to need treatments for two months after returning. (It is interesting to point out that many people who develop chemical sensitivity recently had orthopedic injuries. In fact this is so common that my environmental medicine physician when I went through his treatment program had a chiropractor on his staff for his patients.)  

It was when I returned to work from this leave of absence that I was exposed to the chemicals that caused the initiation of MCS. While I was gone on leave the hospital had purchased new floor cleaning and finishing equipment.  It seemed that they were using this new equipment excessively outside my office.  I returned from leave in the fall of 1998 and was exposed to the fumes from the chemicals used to clean, strip and polish the floors as well as a residue that was emitted form the floor burnisher that was blowing into the office.  My office was located at the end of a long hallway so the residue was likely coming from more than just right in front of the office but from all along this hallway.

After five months of exposure to these toxic chemicals, all solvents, I began to develop severe migraine headaches in February of 1999.  I took my vacuum from home in a couple of times after work to vacuum the floor burnisher residue that had blown into the office in an effort to help these headaches.  It didn’t help.  After about a month of these headaches I began to have reactions to perfume, the oil leak in my older model car, cleaning chemicals, ink, etc.  In addition to headaches, I now also had gastrointestinal problems, chest tightness and congestion, skin rashes, difficulty concentrating, blurred vision and fatigue.  In March I complained to Facility Management about the residue.  They figured out and told me that the residue was coming from the floor burnisher.  They said when the floor burnisher was stopped too quickly it would rotate in place and emit this residue which was blowing into the office.  After I complained the residue stopped but I remained sick.  Later I found out the reason it stopped likely was, because of my complaint, the office was changed to positive pressure which then kept the residue from blowing into it.

Needless to say all that was transpiring with my health and these new and severe reactions to common everyday chemicals was very upsetting and confusing for me.  In an effort to improve my health and hopefully stop the reactions I tried an elimination diet, started bringing filtered water to work with me, saw an allergist, etc.   Nothing helped but I continued to work despite the chemicals at work making me sick.  The only time I began to feel better was when I was home away from the workplace chemicals.  In June of 1999 the hospital began a construction project and my condition worsened.  The pulmonary congestion worsened.  I developed severe nausea and heart palpitations and began rapidly losing weight.  It was literally unbearable and I was forced to leave work a week after the construction project started.

Those were the events of how my MCS was initiated by the solvents used to clean and finish the floors then spread to having multi-system reactions to a whole array of everyday products and chemicals.

PS: The psychologist who interviewed me for social security disability (which recognized I was disabled and awarded me disability) asked me why I didn’t ask to be transferred back to the hospital where I had previously worked for 20 years prior to transferring to the hospital where I got the toxic exposures.  I told her once I had developed MCS it was too late. It is my understanding that the earlier stage of toxic injury ie sick building syndrome is reversible if you remove  yourself from exposures.  But once  you have developed full blown MCS unfortunately it is irreversible.

After having to leave work I then had to begin the search for finding medical help for this serious and confusing condition I had developed.  My general practitioner referred me to a toxicologist who diagnosed my pulmonary symptoms as RADS (reactive pulmonary dysfunction syndrome) as well as diagnosed chemical sensitivity both of which he attributed to the workplace chemicals.  But toxicologists are not treating physicians for a chemical injury.  So I sought help from local physicians for treatment for the pulmonary, gastrointestinal and chemical sensitivity symptoms I was having.  None of the physicians I saw for these were trained to diagnose or treat a chemical injury and chemical sensitivity. This was frustrating to say the least.

Fortunately I ran across someone with my same condition of MCS, from out of state, whom I spoke to by phone.  He told me I needed to see an AAEM (American Academy of Environmental Medicine) physician and recommended the physician I now have had for the past 21 years.  It required me going out of state as there were no AAEM physicians in state at the time but it was well worth it.  I saw my environmental medicine physician for the first time in January of 2000 and later underwent an intensive biodetoxification program at his clinic that included sauna as part of the treatment.  I learned the value of sauna through this treatment program.  After purchasing my own sauna it has been my main form of treatment for chemical sensitivity along with avoidance of toxic chemicals as much as possible.

Fortunately my pulmonary symptoms resolved several months after leaving work.  But I remain very chemically sensitive.

Indoor Air Pollution

According to the EPA “Americans, on average spend approximately 90 percent of their time indoors, where the concentrations of some pollutants are often 2 to 5 times higher than typical outdoor concentrations.  Indoor concentrations of some pollutants have increased in recent decades due to such factors as energy-efficient building construction (when it lacks sufficient mechanical ventilation to ensure adequate air exchange)and increased use of synthetic building materials, furnishings, personal care products, pesticides, and household cleaners.”   Source: https://www.epa.gov/report-environment/indoor-air-quality

My first order of business after developing MCS was to make my home more environmentally safe.  First, I went through my house and garage and collected all of the toxic products I could find such as paints, varnishes, perfume bottles, toxic cleaners, etc. and took a trunk load full of this stuff to the toxic waste disposal center (and actually got sick on the way from the fumes coming from the trunk up to front of the car!).  From then on replaced everything with unscented, nontoxic, low VOC products including any personal care, laundry, furnishing, and building products.  I also went through the house and either got rid of or sealed (with multiple coats of low VOC sealer) all furniture that contained formaldehyde containing pressed wood or particle bard.  Tested and found elevated radon levels so had radon removal system installed.  Over time had all the wall to wall carpet removed and switched to  using only washable throw rugs. Purchased water filters for my drinking water and shower.  Purchased air filtration systems, both portable and upgraded one for the The home and mcsfurnace.  Over time replaced gas appliances with electric.

“It is imperative for the person with MCS to create the cleanest possible living space.  This cleanup requires learning about everyday toxics and safer alternatives, and demands at least some financial investment. ”     Source:    http://www.ei-resource.org/articles/multiple-chemical-sensitivity-articles/the-housing-challenge-in-multiple-chemical-sensitivity/

As you can see with my list of improvements that it was no small expense but it was spread out over a number of years.  And as the above article says it was imperative  to create a very environmentally safe home.  I know how fortunate I am to be able to do this as many with MCS are not as fortunate and don’t have safe housing (see full article above).

Because of chemical sensitivitiy I spend most of my time at home.  When I go out to do errands or the occasional social or public event I am careful about the places I go.  But even then it is inevitable to get some exposures in today’s toxic world.  I regularly do sauna and with any added exposures do extra sauna.  Sauna has been a lifesaver for me all of these years since purchasing it in 2001.  I can’t even imagine coping with this condition without it.  The heat from the sauna mobilizes the chemicals stored in a person’s fat tissue, organs and elsewhere and facilitates their elimination not only through sweating but through the GI track and kidneys as well.  This is so helpful because most people with MCS have an impaired detoxification system (insufficient detoxification enzymes, etc.) making it more difficult to process and eliminate toxins.  The blood brain barrier has also been damaged in people with MCS (due to chemical injury) which is another reason why toxic chemicals adversely affect us more than others.

Outdoor Air Pollution

Then there is outdoor air pollution to contend with that I have less control over.  That includes city mosquito spraying, neighbor’s use of pesticides and herbicides, toxic dryer vent exhaust form neighbors using toxic laundry products, etc.  One of the worst exposures that I’ve had happened due to an overspraying incident of pesticides for mosquitoes.  I am on the city’s shut off list for mosquito spraying for maxresdefaultthe street in front of my house.  But one extra rainy year there as a massive overspraying incident on the undeveloped five acre lot back of me.  It was odd because it occurred during the day and the City sprays for mosquitoes at night so can’t say for sure it was the City that did the overspraying.  But it was so heavily sprayed that my air conditioner picked it up from the air and ground and contaminated my whole house making me extremely ill with flu-like symptoms, nausea and fatigue.  I had to discard furniture that could not be cleaned, boxes full of books and other belongings, hire a team to clean all surfaces including ceiling, walls, floors and furniture, in most rooms twice, to remove the pesticides.  I reported this incident to the Pesticide Bureau of our state’s Department of Agriculture which sent out an investigator who made an incident report.

Summary

There are definitely lots of challenges to living with MCS.  Just when you get one challenge resolved there always seems to be a new one!  But I long ago adjusted to having this condition and learned to deal with it the best I could.  Everyone with this condition has their own unique story to tell.  If telling my story helps someone else in some way that would be wonderful.  If enough of us spread the word about the dangers of toxic exposures maybe we can prevent others from developing MCS or other environmental illnesses.