Environmental Illness is costly not only emotionally to the person suffering through it and their family but it is monetarily costly as well. In the beginning of my illness I was sent to an allergy and immunology specialist by my ENT, Dr. Spitzer. Our insurance paid for the office visit but did not cover the EPD (enzyme potentiated) treatments. These treatments consisted of two injections given every two months at a cost of $150.00. My insurance did not cover the special B Vitamins I needed. And it didn’t cover the special flours and other items I needed to bake my own breads, cookies, and crackers. I had been told to avoid wheat, oats, barley, corn, and fermented products like soy sauce, catsup, vinegar, etc. I began making trips to a health food store an hour from home to buy rice flour, tapioca flour, potato starch, garbanzo bean flour, carob products, guar gum (a stabilizer to replace gluten not found in these flours), and special rings to make my hamburger buns.
Fast forward a bit and I need to take a nebulized antifungal. My insurance would pay for the nebulizer ($150) but not the compounded antifungal for the nebulizer ($1200.). Fortunately, I was put into a a trial that allowed me to buy the antifungal for $300.00 I believe.
Before long I was being sent to Dallas for the first of what would be several trips. I had filed for workers’ compensation but who knew what the outcome would be and if these new expenses would be covered. My first trip included the cost of airfare for both my husband and I from California to Dallas. It cost us over $400 to rent a car at the airport for the week my husband would be there (we learned that it would have been cheaper to rent a car outside of the airport). There was the expense of my husband making a second round trip by air to visit me when my stay was to be extended longer than we had planned. The cost of my room was $1100 per month for a two-bedroom environmentally safe apartment if I shared it with a roommate. My stay was nearly four months. None of these expenses were covered by insurance. I had to buy organic food and unusual foods for testing when I was rapidly losing foods that I normally ate. A loaf of yeast-free bread made of water chestnut flour was $7.00. A water chestnut flour bagel was $3.00. My bottled water was over $1.00 per bottle. I had to have special shampoos and soaps as well. Again these were not covered by insurance. My treatments had to be paid up front and then submitted for reimbursement by my insurance. Each item I did skin testing on cost me $23. I can’t even begin to tell you how many items I tested just to find safe foods and that was before I tested molds, pollens, and other inhalants. I was doing two IV therapies a week at $125 per IV. I was doing daily sauna therapy that was $35 per session. I was doing oxygen therapy. I was going through numerous labs and tests that were also very expensive. Weekly I would pull out a credit card one that still had room to charge on it), pay the weekly bill, then spend the weekend putting it all together to mail to my insurance. They paid a percentage of those bills.
I returned home from Dallas with antigens that I needed to take daily (I rotated them using a four-day rotation) and these items were expensive as well. After having a urine Tricothecene test, I learned that I was continually being made more ill by the mycotoxins on my clothing that had been contaminated from work. I had to give away my clothes and start over because the cross contamination of mold and mycotoxins would continue to make me ill. My mother came over and bagged up all my things. You can see pictures of this in my blog post, Environmental Illness – Not for the Faint of Heart. I also purchased a sauna for $3,500.00 that was not covered by insurance but was needed to continue my detox regimen at home.
I bought only a few clothing items because I could not afford to replace my entire wardrobe.
Dr. Rea from the Environmental Health Center – Dallas issued a letter that included a rough estimate of costs that I would incur as a result of my mold exposure to be used in court. I will include more from that list and other expenses during Part 2.
I have had questions about mattress covers for the chemically sensitive. When I first became aware of my chemical sensitivities and before I realized I had to get rid of my mattress and everything else, I purchased a barrier cloth mattress cover and pillow covers similar to the picture above which is available from Amazon.com. The fabric is a very tight weave and helped with some of the products and gasses in my mattress. However, for me, the barrier cloth also had its own particular odor and I had to wash it a few times to make it safe enough to use. For those of you who still have the luxury of a real, honest to goodness mattress, do you have mattress covers? If so, what do you use?
My friend and fellow blogger Rachel from doilooksicksent me the link below in a reply to one of my posts. I loved it and had no idea Disney worked so well with Chemical Sensitivities. Maybe a trip sometime down the road might be possible.
I subscribe to many blogs. It seems that I keep finding more and more than I am truly interested in that offer a great deal of information relating to me and to my readers as well. Some of the blogs I am fortunate enough to get notified via email of new posts and topics. Some I get through RSS feeds and have to remember to check them. Often it will be days and my brain fogged mind will alert me to the fact that I haven’t checked recently.
I recently read an article titled “Why is Your Body Toxic?” I have always known that chemicals were bad for us but never really gave my cleaning products, shampoo and body care products or laundry products much thought as to what was in them and what harm they could be doing to me until my mold exposure happened and the domino effect it had on me and my new-found sensitivities to chemicals began. According to the article I read, about 1,000 new chemicals are registered with the U.S. government each year. It states that our bodies probably have hundreds of chemicals in them. In 2009 blood and urine samples from 2,400 people were taken and checked for chemicals. Researchers found 212 chemicals in the samples and the saddest and most frightening part was that 75 of the chemicals had never before been found in humans.
Some of these chemicals were Disinfection By-Products (Trihalomethanes) like Bromoform and Chloroform. Some of the Volatile Organic Compounds (VOCs) included Benzene, Ethylbenzene, Hexachloroethane and Styrene (no wonder look at all the styrofoam products we have used over the years).
Another sad fact that this article mentions and something that I have read about in other articles is the high number of chemicals that newborn babies are found to have. An average of 200 industrial chemicals were found in umbilical cords.
The article further talks about ways to reduce our exposure to toxic chemicals. Many of you may already know this or be doing these things such as buying organic food, purifying your home’s air and using natural cleaning products.
Sinking down in my air mattress that is. Christmas day I woke up to a softer than usual air mattress. I thought that maybe it had been too long since I added air to it. I pumped it up and went about enjoying the day with my family. By the time I went to bed it was soft again. Last night I must have added air to the mattress three times because I kept sinking to the bed frame. Of course, it is winter and outgassing another air mattress is going to take forever because it is cold and I don’t have the lovely sunshine to help. I should have listened to my inner voice this past summer that told me to buy an extra one and get it aired out.
So here I am with one useless air mattress and a second one that my daughter is using while she is here visiting for the holidays. She told me this morning that she would sleep on the child’s air mattress reserved for the grandchildren and give up the queen size for me.
None of this has been good for my back or my spirit. We just rolled up the one with the slow leak (that we cannot find) and will move the other one to my room later today. My daughters have also talked about getting together before the younger one flies back to Texas and have lunch and go to a movie. Oh, how that saddens me. I so want to be a part of the fun! It would be fun to get together and meet at an outdoor cafe for breakfast but it is now winter and too cold. I have to rein in my disappointment and remember that there are still things we can do even if I cannot participate in all the things going on around me.
For all my readers and followers, I hope you had a wonderful Christmas. With the exception of the mattress, mine was wonderful. I need a few more days to myself to enjoy family and catch up around here after all the holiday hustling. You may see a few more reblogs during my absence. I will still check in and respond to comments.
What do other multiple chemical sensitive and mold sensitive sufferers sleep on? I wondered about that. When I came from Dallas and moved into my new safe home, I did not have a bed. I couldn’t tolerate all the chemicals in traditional mattresses. My only option: an old metal army cot my husband managed to find and clean for me and cotton blankets. It took five or six cotton blankets folded in half or thirds depending on the size of the blanket to make my mattress. The downside, once I crawled in, I immediately sank to the middle. I was always tossing the blankets in the dryer for two reasons. The first being to help with dust mites and the second to fluff up the fibers. The first night’s sleep on those blankets was heavenly, they were warm and soft and fluffy. By the next night they were cold and matted together.
I ventured out and ordered a wood bed frame and a cotton futon type of organic mattress. I had it made especially without flame retardant chemicals (you will need a doctor’s prescription for this). When the mattress arrived it had a very distinct odor about it. I phoned the company and was told it would need to air out for a couple of weeks. Since it was summer time, I took it out during the day in the hot sun. By the third week, I still would get my mold reaction whenever I put my face into the mattress. I had to send it back which not only cost a restock fee but cost a fortune to send it back by freight.
The cot with the sagging wires and hard blankets continued to be my bed for a very long time. One day when visiting a doctor of mine I mentioned the mattress problem. He said many of his mold patients had resorted to buying air mattresses and letting them off gas in the sun and heat of summer before they could use them. I was possibly reacting to the organic mattress because organic cotton is not sprayed with fungicide and therefore can have mold spores in it.
My husband and I purchased an air mattress and baked it in the sun for quite a long time. Then I finally tried it. I was in heaven. It was firm and soft. It didn’t sag in the middle thus alleviating all the bank pain I had been suffering. Air mattresses, however, are not meant to be used as every day mattresses. After about a year, they develop a slow leak (which we can never find to fix) or a baffle breaks leaving a huge lump in the middle of the bed.
Aerobed makes a pvc free bed called Performa Lite and there is Kelty Sleep Eazy pvc free air mattress.
allergictolifemybattle Everything Copyright me 2012 Unauthorized use and/or duplication of this material without express and written permission from this blog's author and/or owner is strictly prohibited.