From Diane Hendee, Saginaw, Texas
The first time I remember having a reaction to the chemicals in perfumes, colognes, and after shaves, etc. was shortly after the birth of my third child, which was in July 1991. At this time I only seemed to have a reaction to the fragrance one person at church wore. It was very strong and though I tried to avoid the person, even at twenty or thirty feet away I would end up with a terrible headache. One day while exposed to the cologne I had extremely sharp pains move about the back of my head. Many times I would retreat to the Mother’s Room to get relief. Using over-the-counter medicine for headaches and removing myself from the exposure, I would recover in a short period of time. During this time I also had problems with congestion and what I think was outdoor allergies. Our lawn was mostly weeds and usually when I went outside my sinuses would burn while smelling them. I went through these conditions for about two and a half years, and then we moved to a new home.
Taking advice from my older son’s allergy doctor, and research I did, we took some precautions before we moved into our new home. Some of those precautions were: sealing the inside of all the cabinets to prevent the outgassing of chemicals contained in the wood, painting the bathrooms and kitchen instead of wallpapering, buying indoor quality continuous filament carpet which does not shed, having the builders install a special filter for the central air system, and sodding the front and back yard to help prevent weed growth. We moved into our new home at the end of May 1994 and I seemed to do better right away. My sinuses did not burn when I went outside, I didn’t seem as congested, and I don’t remember having headaches from perfumes or colognes at the new church congregation we were attending.
There was also another member at this congregation which had problems with chemicals. Announcements had been made in the past to inform the congregation of her situation so they could take action and not wear anything that might make her sick. I am sure this helped my situation since there were many who did not wear cologne or perfume.
In the summer of 1995 my family started attending United. We observed the Feast of Tabernacles that year in Massachusetts and before returning home spent about a week in Washington D.C. We stayed outside the city and rode the train in to see the sights. The condominium we were staying in had a strong powdery smell and I started feeling bad right away. By the third day instead of taking the train in with the rest of my family I returned back to where we were staying. I continued to get worse. I had no fever, but I was nauseous and didn’t want to eat or drink anything. I had trouble breathing, severe back pain, and I hurt all over. I was taken to the hospital where they gave me medicine for nausea then I went back to the condominium. The medicine didn’t seem to help but we flew home the next day and I started feeling better on the flight home. I apparently had a bad reaction to the cleaning solutions used in the condominium.
I had another severe reaction on a teen ski trip in December of 1996. Within five minutes of walking into our room, which had a strong smell of cleaning solution, I started having trouble. I left immediately and went to the lobby where the rest of our group were getting their skis. I felt as though I would pass out, I had trouble breathing, and my face was burning as if it were on fire. I didn’t seem to be improving in the lobby so I went outside into fresh air. I recovered fairly quickly after that and we were given another room which worked well for me. I was able to participate in all the activities for the three days that we were there.
In the spring of 1996 I noticed a moldy smell at times when I was by the back door of our home. The molding outside had separated from the house and moisture had gotten in there. About a year later in April of 1997 I noticed the moldy odor again. This time I noticed the odor every time I went near the door. I also noticed that the door trim inside the house seemed to have mold on it at the very bottom. After a few weeks of this I decided to take the board off the outside to see how bad it was.
That was a big mistake. By that afternoon I had so much pain and muscle tightness in my mid-back and shoulder that my right hand and fingers seemed numb and I was also having trouble breathing. I went to my chiropractor which helped some. The next morning I was worse. Besides the numbness, I felt as though my lungs were being crushed. So I went back to my chiropractor and had another adjustment. Shortly after driving away from the chiropractor’s office all the problems started coming back. I went straight to my family doctor and gave them my symptoms. I told them I thought I was having an allergic reaction because of the mold. They thought it might be my heart so I was hooked up to a heart monitor and they called the paramedics. The heart monitor didn’t really show a problem and my blood/oxygen level was normal but I was still off to the emergency room.
On the way to the hospital I told the paramedics that I thought I was having an allergic reaction to mold so they gave me Benadryl. It helped some. They were the only ones who seemed to listen to me. After talking to the ER doctor the nurse came back in and said the doctor had ordered a tranquilizer. They then admitted me into the hospital to keep an eye on my heart. I did a stress test the next day in which I did fine except that my beginning heart rate was high—99 (I wouldn’t know why!--sarcasm). I had blood drawn about every two hours throughout the night, had an ultra sound on my heart, they couldn’t find anything wrong, and they were not listening to me!
Through all this I kept telling them I thought I was having a bad reaction to the mold. One nurse casually asked what I did during the day and when was the last time I had a vacation. I told her about homeschooling my two oldest children ages 15 and 13 for the past four or five years and that my six year old was in public school. I also told her of the projects I was doing around the house and I could not remember when the last time I had a vacation. (Remember the Feast doesn’t count if you are a mother and wife.) She proceeded to gripe at my husband about me doing too much with no time off and told him that I must be taken somewhere for a few days with no kids and I wasn’t to do anything. Oh, I was also given medicine to lower my heart rate.
It was Friday afternoon and I was taken to my parents house not too far away. I didn’t do much there but visit with my parents and read. The plan was for me to go home Sunday. I was having lunch before I was to leave and started having the same reactions as before, muscle tightness, numbness, and trouble breathing. I was taken to the nearest hospital and tested for asthma but I was fine in that area. After another day and night in the hospital, another round of many different tests, one which including putting dye in my veins, and x-rays, I went home.
I had complications from the dye they put in my vein so I went to see my family doctor a couple days later and updated him on what I had been through. He told me that my vein had collapsed and it had developed blood clots but he thought they probably wouldn’t go to my heart. There was nothing he could do. I was told to come back if it got any worse.
I went back a few days later but he was on vacation so the receptionist sent me to a back up doctor. Even though I didn’t have an appointment, I was seen right away. The nurses and doctor seemed very concerned about the blood clots. I told him of my experience of the last week and also some of the problems I had the last few years. He asked some questions and then told me I probably had Reactive Airway Disease. I was prescribed allergy medicine and for the first time seemed to get some relief.
I would suggest to anyone who has many headaches, including migraines, or if you seem to hurt all over, to try to get away from all or at least most chemicals for a week. I have a friend who had a lot of headaches and he found out about my situation. His wife quit wearing perfume and his headaches have disappeared. Also beware of over-the-counter medication. I have noticed that sometimes when I have to take medication I hurt in the location of the liver. I have learned recently that the medication can cause liver damage.
My mother had an overexposure to chemicals at work a few months prior to my exposure to the mold. It wasn’t until this time that I really realized how much affect the chemicals in perfumes, colognes, and after shave products, etc. were having on me. She started having problems at church with perfumes, etc., and was having some of the same symptoms I was having.
I had been going to my chiropractor for years for muscle tightness in my neck, shoulders, and upper back between my shoulder blades. I also felt weak for days at a time and I was having more headaches. I hurt all over most of the time and sometimes for days didn’t feel like doing anything. This is not good when you are homeschooling and have a family to take care of. I have a great chiropractor and we tried so many things over the years but there was no lasting relief. He even checked me for Fibromyalgia but that didn’t seem to be the problem. So I kept using over the counter medicines and my allergy medicine to get some relief.
I have started having more severe reactions to scented products and I ache all over most of the time now. I have started to get more headaches and have a lot more trouble breathing. A couple other members and I with the same problems have to sit in a "fragrance-free" room before, during, and after services to be away from those wearing cologne, etc. We hope that someone scent free will come and visit, but not many do. We can not attend most church activities which is discouraging. Our husbands naturally have to endure most of the same sacrifices with us. All of this is hard on our husbands and children.
Even though I sit in the fragrance-free room at church, I often feel worse after going to church, and it sometimes gets worse for a few days before I start to see improvement. I feel better by the end of the week only to start the cycle over again. But when my parents and we have attended other congregations which were smaller and very few if any were wearing fragrances, my mother and I thoroughly enjoyed it. We were able to fellowship with the brethren and feel like we were still a part of the church without getting sick or even worrying about any after effects. Then I was able to make progress in getting rid of body aches, headaches, muscle tightness, etc. Sometimes you don’t realize how much you are hurting until you don’t have the pain any more.
Everyone in my family must use unscented products or I will have a reaction. I have become more sensitive over the years and especially the last six months, so all laundry soaps, fabric softeners, lotions, hair sprays, deodorants, cleaners, etc. must be unscented or I will have a reaction if used inside our home. We do not use scented candles, potpourri, or deodorizers. If we have visitors they must use unscented products while in our home or I will have a reaction. Most of these products do not cause a problem when others use them outside our home because the scent doesn’t linger.
On rare occasions there is a problem. My youngest son has a friend in the neighborhood that smells so much like fabric softener that even if they play outside my son comes in smelling like the other boy. He has to change immediately and the boy can never play inside our home. My husband even says he can smell him coming from down the street. In the summer the neighborhood kids come over and swim. They use our sunscreen and I stay far away and upwind of their towels.
Things like perfume, cologne, aftershave lotion, scented body spray, etc., are meant to have a lasting odor. The scent will linger and cause problems to those with sensitivities even though there is no direct contact with the person.
It is difficult to do some everyday things and activities with the family. I have to avoid anyone who has perfume on while in any public place like the grocery store, shopping for the kids, library, etc. Thankfully, because I homeschool, we can shop during the day when the least amount of people are in the stores. I also do most of my shopping in warehouse type stores with tall ceilings and wide isles which helps. I don’t go to the mall unless I absolutely have to and then I avoid the perfume sections. I almost always have at least one of my children shop with me and they help me avoid the people who have on cologne.
We go to the dollar theater because not many people go and if someone sits near me wearing perfume, I can usually move to another area. Bowling is bad because most alleys have a lot of smokers. It is hard sometimes to get a hotel room that doesn’t have a strong cleaner or musty smell. I have had to sleep out in our van because I was not able to stay in the room even with an air purifier. I hope there is a breeze when I have to fill the van with gas so I don’t smell the fumes. I have to sit in a separate room at the Feast of Tabernacles so I can’t meet new people or visit with others unless they come to visit me.
The above have been just some of the things I have gone through the last ten years. It is hard to write about how much chemical sensitivity really affects your life. If you have an allergy or sensitivity to something, all the doctors and everything you read will tell you to avoid it. That is very hard to do unless you become a hermit. There is not just one, two, or even three factors that cause chemical sensitivity. There are many factors that can contribute to it. It can come on you quickly or build up over some time. You can go online and look up multiple chemical sensitivity or environmental illness. There are also many books available. There is an unbelievable amount of information and stories out there. Everyone’s story is different and no one can be sure they will not have the problem some day.
It is very discouraging to be sick for so long, even after many prayers and anointings I want to thank all the ministers and friends who have been supportive during this trial for me and others with chemical sensitivities. We have so much appreciated the kindness shown from many brethren in voluntarily not wearing scented products at church services and activities. We appreciate all the effort in getting this information to the church. It will help everyone to understand how they can easily help us, and it will help those who have the illness suffer less and enjoy the church much more.