Archive for October, 2008

You don’t know how I feel

On Good Morning America I saw a report about a lady with MCS who built a shed on her property as a trigger-free zone. It’s made of metal and contains only metal and glass objects and blankets made of organic material. A judge ordered the woman to remove the shed because they didn’t get building permits or inspections.

I’m not arguing about the legal aspect of the story. What upset me were some of the comments calling this woman, and by association all MCS sufferers, insane. To me, it smacks of the medieval folks’ belief that disease was caused by evil spirits, simply because they didn’t know about germs yet.

It’s simple. We are surrounded by synthetic chemicals; thousands of new ones are manufactured every year. MOST of these chemicals are not studied on the human body before they are introduced into products meant for mass-consumption. In fact, a lot of the chemicals we are exposed to in everyday products such as perfume and air fresheners are known carcinogens. It boggles my mind that more people are not at least considering the connection between rising chemical exposure and rising rates of autism, asthma, ADHD, depression, and cancer.

Some naysayers point to lack of research in the area of MCS as proof that it doesn’t exist. A flawed argument. A couple of people said that in a study they read (but didn’t provide the link) that certain MCS sufferers were exposed without their knowledge to substances to which they claimed sensitivity, but incurred no reaction.

First of all, if the study was real, I concur that their symptoms may have been psychosomatic. That changes the nature of their illness, but not of mine, and not of all MCS sufferers. When the symptoms come first, all other treatments have failed, and removal of certain substances relieves the symptoms, that’s about as empirical as a person can get outside the laboratory.

When I’m having a bad sinus day, I might suffer for several hours wondering why, then go outside and realize it’s my neighbor’s laundry day. Her dryer vents right between our houses, and the smell of the dryer sheets she uses hangs in the air. After this happened several times, it became clear to me that the fragrance chemicals seep into my house in low enough concentrations where my nose can’t detect it but my sinus tissue is still irritated by it.

Something that non-MCS sufferers might not know is that the effect can be very subtle. So subtle that even the sufferer herself may not attribute her slight headache or reduced cognitive ability to the trigger. It’s extremely difficult to measure the reactions, because it’s more of a quality of life thing than a yes/no thing. And the triggers can be widely varied, as can the reactions, plus we’re normally exposed to many substances at once so it can be hard to separate them. I could easily see where a person with MCS might attribute her symptoms to a red herring trigger.

Formerly doubted illnesses like chronic fatigue syndrome, fibromyalgia, and depression are now recognized by the mainstream medical community, and I’m certain that as more and more people come forward, MCS will be widely accepted as a legitimate illness. Still, as with the aforementioned diseases, there will always be those who believe other people don’t know how they feel.

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More resources for MCS

My fellow fragrance sufferer, Mason, left a comment on the previous post with some resources that he found helpful, so I’m pulling the comment up here into a post. It would be a shame if someone overlooked some vital info that was buried in the comments. (Hope you don’t mind, Mason!)

Mason said:

I have found several sources of information. I’ve been finding similar themes in what I am experiencing and what other people call multiple chemical sensitivity or environmental illness.

So I started looking for groups focused on those things and I came up with lots of good results.

planetthrive.com
communityzero.com/mcsurvivors
And several groups on yahoo.com

All of these websites contain lots of valuable information. I would encourage you to read through some of these pages. From what I can tell, my experiences are not nearly as bad as others, and they have some good advice based on experience. For example, I was recommended Alka Seltzer Gold, and so far it seems to relieve some of these symptoms.

Also,

http://www.epa.gov/iaq/voc.html

That will explain some things about toxic off gassing.

It is a rollercoaster of a ride. Just take it easy, and enjoy the moments of relief when they do come.

I agree, there’s an obvious correlation between my fragrance sensitivity and Multiple Chemical Sensitivity. In fact, I have a couple of links over there in the sidebar that leads to even more resources.

Thanks, Mason!

A veritable barrage of chemicals

In my research across the interwebs, it has become clear that most people who have developed a sensitivity to one chemical are probably sensitive to others as well. Here is a report by PBS on how chemicals pervade our lives. (Link found at the Refreshingly Free website.)

It would be impossible to take all the synthetic chemicals out of modern life, so for now we have to live with them, but my suspicion of all things chemical has been piqued by this fragrance sensitivity. We’re exposed to so many chemicals in products that we assume have been tested for safety, but as the PBS report states, “In fact, until they are proven harmful, most chemicals are presumed safe.” That means that we are performing experiments on ourselves on behalf of large corporations every day! Do they have our best interests at heart? I think not.

So I’ve been unable to completely get rid of my symptoms, though they are much improved with the efforts I’ve made to ensure that at least my home is fragrance-free. I’ve noticed that my eyes lose focus when I’ve been on the computer for only a half hour. Closing them while I type doesn’t help, as I would expect in the case of eye strain.

Well, today I found out that outgassing of chemical components used in lots of products, like computers and other electronic circuitry, carpets, office furniture, etc, can give off chemicals which can cause reactions similar to my symptoms. And this corresponds with my situation, as well. I used to sit on the couch in the living room with my laptop, and while my eyes did get tired looking at the screen, a short rest of 10-15 minutes helped immensely. Since my laptop broke I’ve been using the desktop computer, which is in a room filled with electronics: new washer and dryer, electronic piano, wireless router, cable router, printer, monitor, CPU, speakers, cordless phone base. I spend many hours a day in this room, within arm’s reach of all these things.

I’ll be able to put my theory to the test soon. Not only am I ordering the part to fix my laptop, but I’m going back to dial-up Internet, so I won’t be sitting for hours in this back room. I’ll let you know what I find out.

Fragrance-free-for-all

I have a lot of fragrance-related things to talk about so this will likely be long and rambling.

First of all, the euphoria that I felt after recognizing the problem got lost in depression. The depression was triggered by several factors, but I can’t discount the lack of fragrance as one of them. Don’t get me wrong, it is a HUGE relief to be able to say, “I have a headache because of _____,” instead of wondering why my body hates me. But it’s common knowledge that scents play a huge part in our lives, our memories, our comfort, and I have effectively eliminated those from my home environment, where I spend 95% of my time. I’m going through an adjustment period, I guess.

I made a fairly fragrance-fllled foray into the world this weekend. Saturday I scoured the thrift stores for clothes to fit my burgeoning figure (another adjustment to going FF?), then went to the grocery store. Sunday I went to Wal-Mart and spent much time near scented products looking for the non-scented versions. Ironic, isn’t it, that in order to go FF I have to first be inundated with fragrance? While at Wal-Mart I saw an old high school friend, and our hugs hello and good-bye left his cologne on my clothes. That part was worth it, but still.

Since my house is mostly FF, I can better observe the onset of symptoms when exposed to fragrance. Some chemicals instantly stab the bridge of my nose and some gradually make it harder and harder to focus. And I’ve figured out that that is the migraine trigger, the straining to focus all day after exposure. So that’s a bonus. All I have to do is learn how to do my chores and watch tv with my eyes closed and I’m fine.

TIP: It can take ten washings to get the fragrance out of your clothes, but I found that you can get rid of most of it by simply hanging them outside overnight. Two nights might be better. Inside doesn’t work. Outside.

It was a successful shopping trip, FF-wise. I’ve been buying All Free and Clear laundry detergent, but this Wal-Mart (not my usual one) had a free and clear version of Purex, which is a third less expensive. Bonus. While on that aisle, a clear bottle of dish detergent caught my eye. I didn’t want to believe it could be true, but it was! Clorox Green Works Free and Clear has no fragrance. When I realized what I had found, my eyes misted over. I kid you not.

I haven’t been able to wear make-up for a couple of months. This was the biggest deal. I kept my Almay eye shadow and mascara, but everything else had to go. Luckily, this was the period of time my chin decided to break out with a mystery rash which wouldn’t heal and I couldn’t cover up. Add that to the under-eye circles, and…oh, the hideousity. The circles are permanent, but the rash is finally clearing up, now that I can wear makeup again. *rolls eyes*

The prices of the “good” make-up sent me reeling, but I had no choice. I ended up with a mix of brands, going cheaper where I could.

TIP: The key to finding FF makeup is to look for the words mineral, natural, or organic.

I can’t say all makeup containing these words are FF, but that is what I observed in my shopping trip this weekend. I was able to find Physicians Formula equivalents in Maybelline and N.Y.C. for much, much cheaper.

What else, what else… Oh yeah, my home made soap is cured so I’ll be using it now. Stay tuned for details on that.