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Another Sad Story

  • Posted on March 1, 2009 at 9:54 pm

I got this email last week as a comment on my web site Fragrance Free World. It just seems lik such a cruel world we live in, doesn’t it?

One thing intrigued me. I’ve never really read about a connection between HPV or other vaccines and MCS. Have you?

Over the last 2.5 years, I have become extremely sensitive to fragrances and have had MAJOR health problems because of them. Up until last October, I’d had migraines on an almost daily basis because of fragrances. For the longest time, my doctors thought it was allergies…. in fact, I’d been on allergy medicine since I was 10 years old… I finally went to an allergist to figure out what it was I was allergic to and it turned out that I wasn’t alleric to anything…. not ever dust! So, after listening to my symptoms (constant sever headache, nausea, dizziness, confusion, easily sicken by motion, poor balance, EXTREME sensitivity to smells) my allergist thought I had transformed migraines and sent me to see a migraine specialist. Last October, I saw the migraine specialist and he prescribed me Topamax (anti-seizure med.) which he said was supposed to raise my tolerance to stimuli! It has made a world of difference. I can’t and NEVER will be able to w ear perfume, or use scented anything and neither will my husband and those coming in close contact with me, but at least now I don’t get an instant headache from every little whiff of fragrance like I used to.

I really don’t understand where all this came from. I myself used to love wearing perfume and loved bath and body works products, but now I couldn’t hate them more! Sensitivities to fragrances run in my family, so I’m sure it has something to do with that, but I think two other things (one huge one in particular) may be to blame for my sudden problems. 1. I moved into central WI to go to school… there are TONS over paper mills in the part of the state. Some days I can hardly handle the smell…. I sometimes wonder if being exposed to those chemicals on a daily basis triggered my problems because I never experienced them until I moved and went to college…. 2. Recently, I was given the 3 HPV shots and shortly after those is when I started having problems…. My dad had a similar problem after getting a flu shot which has had lasting effect on him as well…. there is no way to ever prove the HPV shot had anything to do with my becoming the way I am now, but it seems awfully
coincidental to me.

I feel like my sensitivities I have to fragrances and the migraines I get from them have taken over my life! Every single place I go is scented. It has gotten so bad that I have to sniff the keyboard and mouse in the school computer lab to make sure nobody before me has used scented lotion…. I have to sniff chairs that have fabric on them… I carry peppermint oil around with me to put under my nose ever time I smell perfume, cologne, fabric softener to drown out the smell to avoid getting a migraine and I end up applying the peppermint oil until my nose AT LEAST 10 times a day, I have to bring my own sheets when I stay in a hotel, I can’t go shopping anymore (which was one of my fav. things to do) because the mall REEKS of perfume, I can’t sit near people in movie theaters or ball games, I am hesitant to ride in other people’s cars or go into other people’s houses in the fear that it will either reek of smoke, air freshener, or the new car smell….. the only place I feel
I can be at ease and not always up tight is at home…. and up until I got married, I lived with roommates that were VERY insensitive to my requests of them not using fragrances in the house… so at that point even my house was not a safe haven.

I’ve dealt with people telling me it’s all in my head. My stupid sister-in-law even went as far as to tell me that I’ve made up my issues with fragrances and the migraines I get from them to control her brother. (He’s switched deodorant, detergent, stopped using cologne, etc.) It makes me sick that I’m now related to this woman.

I’ve dealt with people telling me it’s their right to wear whatever they want to wear and how dare I ask them not to. I just really don’t understand how anybody can have this attitude towards somebody. I really think it’s sad that people are so mean, ignorant, and inconsiderate just because they can’t understand what somebody is going through and choose to do what they know damn well is making others sick.

The section about me and my world brought me to tears. I sometimes feel like I’m totally alone. It’s nice to know that somebody gets it.

My dad and my aunt, but they’re not as bad as I am.

I view the usage of fragrances like smoking…. if you want to smoke, fine, but make others breathe your smoke in as well. If you want to use fragrances fine, but not in public places where everybody else around you is forced to smell it.

I wish more people would view the situation this way…. or at least not use the whole damn bottle every morning!

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A Visitor Needing Help

  • Posted on September 17, 2008 at 6:10 am

I wanted to call attention to the comments left by Tess on the Welcome Page. She’s dealing w/ asthma caused by fragrances and is in need of help and moral support. If you have any advice or words of encouragement for her, why not leave a comment there. I believe she subscribed to comments on that page and so will be notified of your comment.

Fragrance Free Products

  • Posted on September 16, 2008 at 8:53 am

Last week, I received an email from the folks at Fragrance Free Body Products. They asked if I could put a link to their site on my site. I’ve not tried their products, but I’ll certainly consider them in the future. If you try them out, come back here and tell us how they work for you.

Toxins in Air Fresheners

  • Posted on August 12, 2008 at 4:57 am

Our local television news last week had an item about the toxins in air fresheners. I always have to remind myself that the general public isn’t aware of things like this – so it really is news to many people.

The news article was based on research by Anne Steinemann, a University of Washington professor of civil and environmental engineering and public affairs. She did a study of some top-selling laundry products and air fresheners after having many people tell how these products made them sick. Her study found nearly 100 volatile organic compounds were emitted from the six products studied. And, of course, none of them were listed on the labels.

I found this article from the University of Washington News that gave pretty much the facts of the study:
Toxic chemicals found in common scented laundry products, air fresheners

It references the following 3 articles. As I read through them, I saw certain biases. One article was quick to point out that 2 of the items found in the products were no longer considered carcinogens. It seemed they threw that in to downplay all of the findings. Other articles quote Fragrance Industry bigwigs saying that everything used is safe at the levels they are used. How do they know that? If something is a carcinogen, is there really a safe exposure level?

About That Clean, Fresh Scent . . .
Fresh scent may hide toxic secret
Some scented household products contain chemicals classified as toxic, UW study finds

To my way of thinking, they should be required to list ALL of the ingredients and let the public decide. Some of us already are. I know I only buy products that I can read the full ingredients on. Perhaps we all need to be more vocal about this to the companies that make these products?

More Fragrance Free Stuff

  • Posted on August 10, 2008 at 9:43 pm

As requested, I have added a variety of t-shirts in Cafe Press. So far, I’ve added 3 designs in a variety of colors and shirt styles. I also added more colors for the posters. I’m working on more that I hope to have up this week. I have at least two more t-shirts planned and some coffee mugs.

Check out my shop: Breathe Free Shop.

Leave a comment below if there is something else you would like to see.

Oh, The Irony

  • Posted on August 7, 2008 at 5:33 am

Tuesday’s post was actually written last week. So I found it interesting that the Cathy comic on Sunday addressed the same topic.

I’m not sure how long the comic will be up, so I’ll describe it here. Cathy and her girlfriends are at a restaurant. The waitress asks “What will you have?” The first 3 ladies say “Diet Soda!” But the last lady announces that she no longer drinks diet soda. She goes on to tell the group that the aspartame in diet soda has been linked to migraines, panic attacks, seizures, skin problems, weight gain, intestinal disorders, lupus, fibromyalgia, multiple sclerosis, blindness and death! At that point, Cathy escorts her away from their table. And they start over. And again they each order diet soda. And then from another table, the fourth lady says, “Also denial and memory loss.”

I’m not trying to say that I’m any better than any of them. I’ve been as guilty as anyone of continuing habits that I know are bad for me. It’s just part of human nature, it seems. If it’s something we like or we perceive is good, then no amount of evidence will change it. It seems the only time we change those bad habits is when they threaten our health. (Even then, we don’t always heed the warnings.)

Do Unto Others…

  • Posted on June 17, 2008 at 8:02 am

Yes, the Golden Rule applies here: “Do unto others as you would have others do unto you.”

If you had an allergy or other condition that was worsened in the presence of some substance, you would want to avoid it. And it should be reasonable to ask friends, family and co-workers to help by not using it in your presence. Yet it seems that when it comes to fragrance, the Golden Rule goes out the window. Honestly, I’ve had friends, family and co-workers that thought that I just didn’t *like* fragrance. So it was really OK to wear them in my presence. Which is baffling. People so often equate an allergy with dislike, which isn’t what it’s about. If it were something I just didn’t like, I would endure it. But there are serious health issues for those sensitive to perfume.

There have been a couple of comments here recently that could be resolved with the Golden Rule. Linda left this comment on the Join the Conversation post:

I work in the Disability Services for Students Office at a college in Buffalo, NY and a faculty member down the hall wears an excessive amount of patchouli oil (2 different kinds). I am very allergic and I get temporal artery headaches, my throat swells up, etc. I went to the Administration over a year ago and I was told in writing that I was not allowed to approach this person about her smell nor was I allowed to mention the horrible smell to students in our office.

During exam week May 2008, four students were nauseous and had headaches due to her patchouli oil perfume. Since I am not allowed to approach this person, my boss has asked this person several times to give me the name of the products she is wearing. It has been a year now, and I still do not know what she is wearing. I have gone to an ear, nose and throat doctor, seen an allergist, and a neurologist and still cannot give them the name of the products she is wearing. An air purification unit was installed inside our office in May 2007 but this does nothing to address the issue of the smell outside our office.

On June 12, 2008, I left a phone message for Ann Curry Thompson to contact me. I have contacted lawyers in the Buffalo region, but no one wants to deal with fragrance issues.

I’m not really a big fan of lawsuits. I think there are far too many in this country. But, that doesn’t mean they are all bad. If you’ve got a problem at work and can get no help through your employer, then perhaps a lawsuit is the last option. If you have other ideas to help Linda, why not leave her a comment?

And this one from Sally was left on a recent Susan McBride Update post:

I too am living this nightmare. It use to be that my throat would close up and I’d get a pain in my chest like someone was sitting on it. But after months of having to have I.V. treatments with other patients who had on lotions. laundry soap etc. Even tho I was using oxygen. I moved to a new level. Now my eyes swell shut. That blew my theory of holding my breath when I moved around in public when confronted with a strong fragrance. I now must leave as quickly as I can before I swell up and can’t breath. If I sit in a seat that someone with heavy fragrance has sat I must throw those clothes away. No manner of washing, vinegar,borax,will remove it.

And I don’t have to smell it first to react. People don’t realize it is the chemical not necessarily the odor that causes the reactions. I am now isolated in a room by myself because even the doctors were horrified by my face. Yet still I react because it gets in the air system. I have been told by the place I’ve lived for 10 years that the can’t handle people like me. and have refused to renew my lease. A clear disability violation. Yet I can get no lawyer to handle my case, even tho I have several doctors who will confirm this. I live in florida if anyone can help me.

Please post a comment. I am battling mycroplasma pneumonia which makes my reaction to fragrance and chemicals even more severe.

The added stress of trying to find a “New” place that has not been smoked in, had fragrance etc. Is tremendous. Please post comments. thank you.

It really saddens me to read about Sally’s issues. Perhaps a lawyer is her best option too. I’ve read that Ann Curry Thompson has taken cases all across the country.

Have you encountered similar problems? What tips do you have for Sally and Linda? Leave a comment here.

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Tips for a Healthier Environment

  • Posted on June 10, 2008 at 7:20 am

I’m not taking credit for these suggestions. You can read EWG’s original article – 10 Everyday Pollution Solutions. I just wanted to list them here with some thoughts of my own.

  1. Use cast iron pans instead of nonstick. I have always hated the idea of Teflon. Even before knowing about the toxic, bird-killing gases. The fact is that the stuff comes off the pan. So you know you’re eating it. I recently bought some commercial grade muffin pans. They were all I could find that were not non-stick. Do you know that they actually clean up better than the non-stick variety?
  2. To avoid chemicals leaching into food, go easy on processed, canned or fast foods and never microwave plastic. Follow this link to read up on Bisphenol-A.
  3. Buy organic, or eat vegetables and fruit from the “Cleanest 12″ list. You can see a rating of 43 fruits and veggies at FoodNews.org. The 3 most commonly purchased in our house – apples, strawberries and spinach – are in the “worst 12″ grouping.
  4. Use iodized salt to combat chemical interference from the thyroid. Read more about rocket fuel contamination.
  5. Seal outdoor wooden structures.Is there arsenic in your backyard?
  6. Leave your shoes at the door. This cuts down on dust-bound pollutants in the home.
  7. Avoid perfume, cologne and products with added fragrance. What a great idea. Check the cosmetics database for safer products.
  8. Buy products with natural fibers, like cotton and wool, that are naturally fire resistant. Find products that are PBDE free.
  9. Eat low-mercury fish like tilapia & pollock, rather than high-mercury choices like tuna & swordfish. Check the Safe Fish List.
  10. Filter your water for drinking and cooking. What’s in your water?

Non-Toxic Housecleaning

  • Posted on May 13, 2008 at 5:03 am

I just found this article online that should be helpful to many of us. I always see suggestions to use vinegar in cleaning, but this article – Good Housecleaning: Five Non-Toxic, Get-the-Dirt Out Basicsa by Annie Berthold-Bond includes her seven favorite recipes. I especially liked her recommendation:

My rule of thumb about nontoxic cleaning is this: use only ingredients that have been used without harm for so many years that they are “generally regarded as safe”; otherwise they would have long since been abandoned.

I think my favorite is her oven cleaning as I’ve been struggling with how to clean our oven lately.

Gotta run for now so I can print the article!

Whole Foods Rocks!

  • Posted on March 11, 2008 at 6:00 am

At first I wasn’t so fond of Whole Foods. Mainly because their prices are high. But that’s a fact of buying organic and buying the lesser known brands. When I first learned to really like them was when I learned that they don’t carry anything containing MSG or nitrates. That’s actually a very small subset of the items they don’t allow, but those 2 are important to me because they trigger migraines in me. Finally I had a place that I could buy soups and salad dressings and lunch meats and bacon and the occasional pepperoni without worry.

I also now use them for a lot of other products – especially cleaning and personal care products.

This past weekend I was there looking for my shampoo. I’ve used Earth Sciences for years. They make a fragrance free one that truly has no added fragrance of any kind.

Couldn’t find it. I typically forget that name and just look for the bottle. While looking, I found a “365 Everyday Value” Shampoo that is fragrance free. “365 Everyday Value” is Whole Foods own brand and tends to be a lot cheaper. A Whole Foods employee came up to me to see if she could help me. I told her what I had been looking for. She asked me what the bottle looked like. Then she showed me where that shampoo was. They had totally changed their packaging. Instead of a green rectangular bottle, it was now in a white tear shaped bottled.

But by then I was more interested in the Whole Foods brand. She said they make shampoos, conditioners, body lotions and shower gels. They come in scented varieties, but also in truly fragrance free varieties. The label says they are specially formulated with 100% natural, biodegradable ingredients; free of parabens, animal ingredients, artificial fragrance and unnecessary chemicals. And they are not tested on animals.

The Whole Foods brand items are reasonably priced. In fact, I wound up saving a TON of money:

The Earth Sciences I used to by (the green bottle) was $5.99 for 17 oz. OR $ .35 per ounce.

Their new, improved bottle is only 12 oz and cost $6.49 OR a whopping $ .54 per ounce.

The shampoo I bought was 32 oz. for $4.99 == $ .1559 per ounce!

So, Earth Sciences new label resulted in lost sales for them.

Now, if only Whole Foods would start carrying items with reduced sodium…

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