I am 52 years old and since October of '97 I have had violent reactions to almost any thing made from a petroleum base and some things not made from them. I had worked as a painter for 21 years and have always been more sensitive than any other painters I worked with. I had to wear a double charcoal filter respirator mask when no one else did. If I was around solvents too long, even with that mask, it would get to me. After an over exposure to ACETONE on two occasions in Oct. '97, I became progressively symptomatic until May of '98 when I could no longer work. I have been retired to Social Security for the past three years and have gotten no better. My symptoms are from less to worse, continually. If I get around anything such as gasoline, or gasoline exhaust, natural gas, propane, butane, any type of paint reducer or solvent; magic marker; white out, fingernail polish or remover, just to name a few, I begin to get sick immediately. 15 minutes of being around a recently parked car that still vents fumes, puts me flat on my back in just a few minutes and I am unable to get over it for a day or so. If I am unfortunate enough to get around something as powerful as lacquer thinner, I immediately begin to experience very disturbing moods which last for days. If I am exposed to gasoline or exhaust several days in a row, it has the same accumulative effect on me, taking days to recover. I have been hurt so bad by this stuff that I am scared to death, and with good reason, that one day I will suffer these symptoms and will never recover from them.
I have seen several doctors and the only suggestion they have for me is to avoid the chemicals which are making me so sick. For the past 3 years, I have not left my house beyond the driveway but 6 times for doctor appointments and 1 other time to be accessed by a Judge in my Social Security case. Each time, I wore a double charcoal filter respirator in the car to and from the appointment, but had to take it off during the time I was being evaluated. I got sick each time from who knows what chemicals were in the building and whatever gets into me on the way to the appointments. If I have to go outside, perhaps 3 times a week, usually to put something in the garbage can or hang something on the line, I hold my breath, till I get back in. I rarely go outside, but on occasion an emergency will occur and I have to be out for longer. Other than that, I exist within the four walls of my house and I am constantly sick.
I live in a polluted area. If a car painting business moved in up the street from me, I don't know what I would do. There are several businesses just up the street from me now, and the possibility of that happening to me is a great concern. On a good day, I am slightly dizzy and groggy. If a neighbor is mowing his lawn and the winds blow the exhaust into my garage, I get sick as a dog when I visit it. I recently discovered that a neighbor behind me refinishes furniture at his house and that is probably a big reason I cannot go outside.
I went to see a psychiatrist in September of 2000. It was part of the requirement by the Judge who suggested all of my symptoms were just in my mind. The doctor told me it was not in my mind, that I was suffering from exposure to chemicals which produced the reactions in me. The psychiatrist told me it may be good for me to get another doctor to look at me because I will have to be re-evaluated by the Social Security Administration, sometime in May of 2000 to determine my continued eligibility. I cannot take the stress of going through again what I had to go through to get on Social Security. I was so effected by chemicals from June of '98 through November of '99, that I feared I would never return to a functioning level and that I would loose control from severe depression. I have determined I will never put myself in that kind of risk again. Being locked in this house with minimum exposure to chemicals has reduced my level of anxiety, confusion and panic, but I am still sick constantly no matter how hard I try to avoid fumes. I have taped up the front door and never use it. We never open a window in this house. We do not use any spray cans in the house as most of them contain butane as a propellant, not even shaving cream or spray starch. I have taken all the precautions to keep as many fumes away from me as possible, but I cannot live in a bubble and breathe bottled oxygen the rest of my life. For me it is like being in prison, except I am the only one in the cell. My poor wife has to put up with all of this, including the moods. I just don't know what to do.
MCS Visits Toxicologist "Expert"
In the Fall of '99, my doctor made an appointment with a toxicologist expert. We borrowed a new car with air conditioning, and put it on "circulate" to keep as much outside air out as possible. I wore the mask all the way there. Four hours later, in his office I was sick as a dog. He told me all of my symptoms were the product of my over-active imagination. He told me that the mask I was wearing was not helping me at all because there was nothing wrong with me. He said that he could switch my mask with one with no filters and that I would not know the difference. I answered that the mask I was wearing was standard issue for use around specific chemicals and made by IBM. I asked him why OSHA required the use of them in certain work environments if it was all a hoax? He asked me why was I wearing the mask in his office. I said that it was my experience that when I went into a building, I had no idea what was there in the way of toxic fumes, perhaps the building used natural gas, down the hall someone could be using paint, or a secretary could be putting on nail polish or using acetone to take it off. Possibly, there was nothing in the building which would hurt me, but I was not willing to take a chance. The more he talked to me the more depressed I became.
The doctor told me that he had good news for me and bad news. He said the good news was that I could get better, I could completely recover. All I had to do was to realize that I had made myself sick by believing I was sick. I was to begin to believe I was not sick at all, and I would get better. Then, he gave me the bad news. He told me that in the past year he had seen over 20 people from my area who had come to him with exactly the same symptoms and that out of all of them, only one had recovered. There was no reason that I could not be number 2. The way he answered my questions, proved to me how wrong he was. First, I asked him about those who did not get well, what kind of jobs they had and for how long . He said all but one had long term exposures to various chemicals. The cans for many of these chemicals warn you that the ingredients can cause brain or central nervous system damage, cancer and a host of other afflictions. Then, I asked him about the one guy who recovered. He told me that this individual has purchased a house and had decided to do much of the restoration himself. Over a period of several days, he was exposed to strippers and solvents and got so sick that he ended up in the presence of this doctor. I said, "You mean to tell me that this guy was around these chemicals for just a few days and ended up in this clinic having the same mental symptoms as it took me 21 years to have? I hope you told him to never get around that stuff again or he may never recover from them."
After some time, this man was so convincing that he managed, over my better judgment, to get me to take my mask off in his office. He evidently thought it a great accomplishment, and put it in his report to my referring doctor. Then, I did an even more foolish thing. I did not wear my mask in the car on the way home, chanting in my mind like some New Age idiot, "I am not sick, I will not get sick." We had the AC on "circulate" all the way back. We passed several tractors mowing the grass on the median. I could smell the freshly mowed grass, clear as a bell. I knew that if that smell was getting in the car that other stuff was getting in too. But I kept repeating, "I will not get sick, I am not sick." When we got close to where I live, we got behind a truck. I put on the mask even though I knew it was too late. I was sick for several days. I was angry at that doctor. I realized that no one was going to do anything for me to help me but "ME!" I knew the things that made me sick and it was going to be me who had to take steps to preserve what ever was left of my tolerance of chemicals.
Thank you, Carl Wood
Update February 22, 2002
I am still under the effects of an accidental exposure to a petroleum product this past Monday, here it is Friday night and I am not over it yet. I have been restricted to my house for the past 3 years now, going out only to go to doctor appointments and as far from the house as I can hold my breath and get back inside. It is much like being in prison at times, but if it can minimize the number of exposures, and the ensuing reactions, I consider myself blessed. I have a good friend who suffers from Gulf WarSyndrome and he has many symptoms identical to mine but not as severe. He goes where he pleases but cannot stay long and has to take some herbal remedies after each outing to ward off the effects of automobile fumes and what ever else is out there. I have yet to find herbs that relieve my symptoms. Time is the only factor that relieves my symptoms and the length of time depends on how toxic the chemical was. My doctor for the past 20 years, has retired. He was a real advocate for me, and I am grateful that he handed me over to a doctor who is on my side. It is so refreshing to find someone in government and in the medical profession who is helpful and informed about MCS.