This letter was posted first to the CPAR list (for health professionals with CFS/CFIDS) (2/25/96) and then to the immune list (2/26/96). The author wishes to be known as an anonymous woman with CFS/CFIDS.
Having my house painted in 1989 is what started my multiple chemical sensitivities. We are now in the midst of a remodel (while renting a home next door so that I'm not exposed to the stimulation of the sounds, dust and smells). One day, in the midst of building, the contractor, mindful of my health situation (as I've worked closely with him, drumming into him that he can't assume something is safe for me without asking first) asked if multiple density particle board was ok. I didn't know. Remembering what set off my mcs (ignorance which exposed me to the wrong paint), I didn't want to exacerbate my problem so I turned to Albert Donnay (410 448-3319) for advice.
Albert wisely told me to put the contractor on hold for a day or two until I could get all my questions answered. Thanks to receiving the name and referral number from Albert (along with a very helpful paper on a study done [by Susan Molloy] that polled people with mcs about their in-home sensitivities), I was able to consult by telephone with an expert on creating a healthy home: John Bower (812)332-5073. He and his wife own a consultation business; his wife, I believe, has written a book on healthy homes (i.e. homes that don't create mcs or exacerbate it). I asked him questions that pertained to my particular situation. Again, I called him at a time when the contractor was all set to put multiple density fiber board in. Smart to have called him: this is the Worst in terms of adhesive fumes.
Here is what I found out followed by how I look to make my home as fume-free as possible:
While few of us are building or remodeling a home, many of us will be in/are in the position of moving (is there a new carpet there? what's the heating system?) or of painting at some point.
As a coping mechanism - a way to take more active control over my health situation - I look to create my own healthy home by systematically getting chemicals that are toxic to me out of my life. No more bleach. No more Ajax or Comet (my immunologist told me about Bon Ami - it works and is fume free). I use scent-free products including make-up. Even though I use scent-free detergent, I still have someone else do my laundry (I don't lift anything; I don't expose myself to the mold in the garage). I have my shoes (occasionally) polished for me and then they're aired out. Very little goes to the dry cleaners (as there is no perk-free dry cleaning here); instead, silks are separated by color and washed in cold water with Woolite then ironed damp (so they don't shrink) and hung until dry. Sweaters are put in the cold water delicate cycle. (This has brought my cleaning bill for my business clothes down from a non-affordable hundred dollars a month to perhaps $8. a month and has brought my coughing way down). My husband washes his aftershave off after applying far away from me. Guests to my home are asked not to wear hairspray or any scented products. (My patients read on my office information form - and it's verbally reinforced by me -to come scent free). Cleaning is done with Quick and Bright, white vinegar with water, or baking soda and water. We've taken the carpet up in the bedroom. I use Dr. Bronner's peppermint (liquid) soap instead of regular fumey soap. I've learned that because something says it's for sensitive skin, that doesn't mean it isn't fumey. A heating vent is being put into our closet to ward off mold.
I'm hoping the above examples will be of help and that there will be more discussion on mcs, especially from a practical standpoint. How do all of you find scent free, healthy products?
When I'm around these toxic chemicals, I become more myalgic, arthralgic and cognitively deteriorate. My first onset of CFIDS was in 1988. The mcs added on in 1989. Last year, I fractured three ribs from coughing, and kept re-fracturing them. The year before that, I fractured and re-fractured two ribs. As I've been eliminating these toxic chemicals, my up-regulated coughing is coming down and my ribs have stayed intact.
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