This post is a follow-up to the June 6 post in which Chris described what happened when he fell head first down his basement steps.
I am going to rehab for my shoulder three days a week. It is tough. There are no public places that MCS folks can visit safely, so when the doc told me I would to go to rehab to have use of my right shoulder, I was again in a panic. Nowhere public is fragrance free but I had to follow the docs instructions.
I put together a list of local rehabs, and had a list provided by the doc. I visited all that I could in two weeks. You can imagine what I encountered when I entered these establishments. The rehab I chose I had visited twice before, spoke to the folks there, explaining my problem. They had never heard of MCS but they were willing to help, suggesting that I might do my rehab exercises in a back room, etc., not knowing that no transom stops fragrances.
The only issue I had with this rehab was that I could smell the off-gassing of their equipment. I did not detect the usual perfumed fragrances, though I knew they were there in the mats and leatherette cushions on the exercise tables. (After each session, I must change and shower because I know the scents left behind by others are in the foam stuffing of all tables and chairs.)
I get through the sessions by using antihistamines to totally dry up my sinuses and nasal passages. I wear the same clothes each visit (I air them out overnight, soak them in cold water and vinegar the next day and then wash them that night, ready to be exposed again.) The folks there do mean well. They drape pillow cases over the back and seat of a chair for exercises I must do while sitting.
Okay now, I must tell you that all the physical therapists there were truly interested in MCS. It was not difficult for them to see my moments of discomfort while I was performing my exercises. They asked questions and when I explained about being “allergic” first to my detergent of thirty years, fabric softeners, and now most scents from cleaning products to plugins, they began “googling” and were truly taken aback by what they learned about the dangerous chemicals in products they use.
They have now taken steps to make changes in their personal lives, making the effort to live more chemical free. They even ask me my opinion how to clean some things.
This rehab facility has therapists with the basic training, PhDs, and college student interns who are their way to graduate studies. One intern mentioned that her mother was a nursing supervisor at [John Doe] Hospital, the one with the fragrance dispensers all around the hospital, including the ER and both ICUs. It turns out that my wife Maureen’s oncologist occasionally has dinner with them. I asked the student to ask her mother about the dispensers and told her why.
(My telling anyone who will listen about the horror of the fragrances in that hospital has been going on since mid-2015, including the six docs I see now or had seen back then. Also. I wrote to the director but had no response. I spoke with staff and doctors in the hospital the couple of times Maureen was there with her lung cancer. Each day at University Hospital I talked about it with staff, the team of attending doctors, and when I had to return there for a follow-up with the lead physician, I told her assistant, “Thank you, and I thank God that the EMTs brought me here and not to [John Doe] Hospital.” Of course they wanted to know even more….)
When I again saw the student intern, she told me her mother said they were working on “it,” which I assume the “it” means the “problem.” The last time I saw the intern she reported that her mother said the dispensers were being removed. Not long after that I had a visit with my primary doctor, who has allergies and does not get along with the apple-spice air freshener from the other doctor’s office in her building. She told me she thought the hospital was removing the dispensers. . . .
To me, this is progress. I have met some two dozen people or friends/relatives of new MCS sufferers. The latest is a clerk at an independent radiology lab. She knew I had a problem with fragrances and always let me wait outside. Several months ago she came outside to see me and asked me what exactly was wrong with me. Her close cousin, who must in her fifties, was suddenly having trouble when she visited her. The clerk removed all the candles she had, etc., and when I saw her in mid May she told me she had replaced her carpeting with tile to help her cousin. The cause of her cousin’s MCS, they both believe, is Lyme disease, which was diagnosed less than two years ago.
All right, I hope the info in this email is helpful, and adds in some way to the overall fight for fragrance free workplaces and schools and medical facilities . . . and homes.