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12/10/2008

Multiple Chemical Sensitivity: How You Can Help Patients With This Often Debilitating Condition!! (UPDATED With USA Today article)!

Recently, I started communication with a lovely woman named Susie Collins. Susie writes The Canary Report about MCS (multiple chemical sensitivity).



I have MCS and I am very grateful and pleased that Susie found my blog. We have been corresponding ever since. Her site is nothing short of amazing!

I have MCS. Everyday items such as perfumes, cleaning products, and fragranced soap can cause severe reactions. On more than one occasion I have fainted in stores with new carpets. (I'll have to create a whole post just about all of my carpet-induced fainting episodes).

While you haven't heard me talk about MCS very much, this does not mean it doesn't severely impair me. In fact, it may well be the most challenging illness I have! It affects me every day. Every time I leave my house, I have to be on the defense against chemical reactions that can make me nauseous, dizzy, lightheaded, and even make me feel faint (or really faint)!

I can quickly develop an intense headache from exposures to chemicals that ordinary people do not react immediately to. (These chemicals aren't healthy for ANYONE. Some, like me, are just much more sensitive to them). I was diagnosed with MCS in 1993... shortly after my endometriosis was finally diagnosed. It affects me profoundly.

I ask readers here to please take just a moment to look at Susie's article:

What is Multiple Chemical Sensitivity?


She explains MCS better than I probably can so I'd greatly appreciate if you'd look at her article before I give you a real-life example of an episode where MCS affected me and my family.



Again, before I relate to you a story about ozone-emitting "air cleaners", I strongly urge you to just take a look at what MCS is by peeking at Susie's amazing article listed above.

It helps explain what MCS is. It includes a moving video that really captures just how serious MCS can be. (Thanks for sharing this YouTube video on your site, Susie)!



If you ever wear a fragrance, purchase fragranced soaps, or use cleaning products that are not "Earth friendly", you could be making someone near you sick. This sounds dramatic but it's true! I know because I'm one of the ones reacting to such items. (Yes, no matter how many times you wash your hands after using cleaning products... I can still smell the residue on your hands of items like bleach). So the products you use affects not only the environment but MCS patients near you. MCS is a terrible condition.

I will be writing much more in subsequent posts about MCS. I wanted to start by referring you to Susie's excellent article on what MCS actually is to start. Then I will talk about the dangerous ozone-emitting "air cleaning machines" that you will want to avoid purchasing (items that are heavily marketed at this time of year as holiday gifts to help your chronically ill friends and relatives. The false claims of the products are astounding. Again, here is Susie remarkable article on MCS to start:

What is Multiple Chemical Sensitivity?

Now on to my "air cleaner" story. This time of year in particular, many companies are pushing "air cleaning machines" as holiday gifts. Many claim to help asthma patients. In fact, these machines put asthma patients at greater risk! These are not just false marketing claims. These are dangerous statements that potentially put chronically ill patients at risk of worsening the very conditions these machines are purported to treat!

Here is an article Susie wrote that grabbed my attention since I had a "run in" with such an "air cleaning machine": Warning: Avoid ozone generating air machines.

After receiving such a machine as a gift from generous relatives who saw it advertised as helping asthma, I noticed an odd smell emanating from the machine. Here is an excerpt from a comment that I placed on Susie's blog post about this last night:

Susie,

Wow!!! Here is my story with these atrocious machines.

A couple of years ago, my family received an ozone-emitting "air cleaning machine" from thoughtful relatives. My daughter has asthma. The outside of the box contained all sort of claims stating or implying this machine to be HELPFUL for asthma patients. Since I have MCS and she has asthma, they got this to try to help us “clean the air” in our house. This was a holiday gift. We opened it and set it right up. Since my daughter is the one with asthma, we set it up in her room. (I yanked it within 24 hours... more details coming up).

The very first night we did storytime before bed (after setting up the machine in her room), we sat in the rocking chair next to it to read bedtime stories. I immediately smelled an odd odor which I quickly traced to the “air cleaning machine” and turned it off.

After tucking her into bed, I dove into the packaging material, instructions, etc. I wanted to investigate this machine before hitting the on switch ever again. As we joke in my house, “my nose is never wrong”. After MANY hours on the Internet, I discovered what you are reporting here after combing through site after site.

One of the first things I did was look the product up on Sharper Image (the seller) to verify that I was searching for info on the correct machine. The machine was listed as being VERY expensive and I felt badly when I saw how much it had cost! I was on a mission to see what this expensive machine claiming to help patients of various illnesses actually DOES! To make a long story short, what I found was NOT pretty.

Everything you (Susie) said in this article is aligned with what I found after researching it on the Internet for many hours a couple of years back. I read through everything from Consumer Reports to reports from government agencies to message boards about the apparent tall tale that the Sharper Image site listed online. As you have beautifully laid out, these machines not only DON’T live up to their claims to “clean” the air but they actually emit HARMFUL ozone!!

OK. I had read enough. This machine was not going to be used in my home ever again!!

After presenting my husband with the convincing evidence that this machine didn’t help AND did hurt, he agreed we’d stop using it. What next? Should we tell our relatives the truth about the machine and risk hurting their feelings hurting their feelings by rejecting the holiday gift they so generously picked out for us to improve our health? We didn't know what to do.

Anyway, there was lots of proof this machine was hurtful rather than helpful!

In addition to my Internet research about this product, I had called online healthcare professionals. I called the American Lung Association and was connected (for free) to a nurse who had special training in respiratory therapy. She advised not using the product. (Our pediatrician's office didn't know much about the product when I had called).

So, we had used it for about a day. With all of the holiday commotion, it had not occurred to me to sit down and scan the box in-depth for clues of trouble. (Besides that, the box was covered with false claims and misinformation).

If I had not had a gut feeling that the funny smell emanating from the machine spelled trouble, I might never have launched my Internet quest and phone calls for the real scoop on such machines!

This article [of Susie's] is a great service!! It’s timely (with such items being heavily promoted at holiday time... which is when my relatives bought us one).

Also, it is important for fantastic articles like this to be available so that when confused consumers go on their “information searches” (as I did), they will see ACCURATE info. (I had seen message boards and reviews. All either rated it 5 out of 5 stars or ranked it a 0 or a 1 while going on to rip it apart and tell the truth about its dangers. (So I’m guessing that some of those 5 star reviews were planted by reps of the companies who make obscene profits from these dangerous machines but maybe I’m too cynical).

All I know is that everyone online seemed to “love it or hate it”.

THANK YOU for this article!! It is so great to see the FACTS about this getting out to the public. A very timely piece!!

Readers here: Please do me the honor of checking out Susie's outstanding site that is educating and helping many MCS patients, myself included!

Here's that address one more time:


The Canary Report

So how you can help MCS patients? BELIEVE THEM!!! LISTEN TO THEM AND TAKE THEM SERIOUSLY... THEY ARE NOT IMAGINING MCS!!

This holiday season, when you dress to go to family gatherings, consider not applying that perfume or cologne. It makes some of us feel very, very sick!

This is a real and serious illness that is very misunderstood and not in patients' imaginations. I know from personal experience!!

UPDATE... USA Today article...

Ionizing air cleaners get zapped

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

28 comments:

Melissa said...

Jeanne,

What I find disturbing in this day and age of allergies, asthma, and MCS, is that department stores still insist on not only having their perfume counters located close to the entrance so that you MUST walk through them to enter, but they also have people who will spray you without even asking!

While I don't have MCS, luckily enough, I do suffer from severe migraines. My grandmother used to wear Chanel #5, and White Diamonds. These particular fragrances, which are still quite popular, floor me completely. I mean, I literally crumple to the floor and pass out.

One day while at a department store, this lady working as a "sprayer" insisted on spraying me without permission to do so. After I vomited on her shoes, I explained to her that many people have sensitivities to chemicals that are in perfume and that it makes me sometimes unable to catch me breath, severe long-lasting migraines, and yes, nausea and vomiting. She had the audacity to suggest that I shop at a different store then. My only response was "Thanks for your lack of understanding".

I had wrote a letter to the department store manager and then to the operations manager, only to be told that it wasn't a serious problem and it was implied that I was just being "overly sensitive" towards the situation. Hmmm, I'm sorry but with how many millions of people who suffer from a sensitivity such as this, you would think that there would be some room for improvement.

I have only seen a few stores that actually have their fragrance counters squirreled away in a corner away from the entrance. I much prefer these stores, if I have to go into them at all!

Just my two cents.

Melissa

Jeanne said...

Melissa,

Amen sister!!!

I am SO sorry you have had the experiences you've described! Like you, I have many such horror stories to share. Susie of The Canary Report has inspired me to start blogging more about this important topic.

Since there is such a lack of understanding by the general public about these issues, I have been procrastinating writing the post I published today.

It is sometimes just TOO exhausting for me to explain MCS to people who think, as they did with you, that I'm "being too sensitive" or that I should "shop elsewhere". If such stores only knew how hard I work to avoid them! I seek out "safer" stores (or shop online) for this very reason.

I must give a huge THANK YOU to Susie of The Canary Report! After 6 months of blogging, I have FINALLY posted about the illness that impacts me more than the rest.

As terrible as my other illnesses may be, there are generally SOME treatment options (however riddled with side effects they may be). In some cases, surgery helps (i.e. with illnesses like endo). In some cases, alternative medicine does wonders.

The ONLY thing that helps me deal with MCS is:

1) Educating people about MCS in the hope that more people will become aware of this debilitating condition...

2) Avoidance (to the best of my ability) of triggering chemicals...

I have passed out in doctor's and dentist's office MANY times from waiting room carpets.

No one should have to worry about going unconscious at the doctor's or dentist's office!!

The public needs to realize that MCS patients truly are the "canaries". ALL people can be harmed/are being harmed by the ubiquitous use of perfumes, toxic "cleaning" products, "air fresheners", etc.

To find a public rest room nowadays without an "air freshener" showering the room with heinous smelling chemicals is a rarity.

The sad fact is that many of these "air fresheners" contain TOXIC substances including carcinogens and more. (See my post the other day on phthalates/toxins for more info on the dangers of "air fresheners").

THANK YOU SO VERY MUCH for your educational, detailed comments.

Hopefully by sharing our stories we can make the world a better, safer place... not just for migraine and MCS patients but for all!!

Truly... ALL humans are put in danger by these chemicals that cause people like you and me to vomit and/or pass out upon inhalation.

I greatly appreciate you sharing your story!! I think you did a great job explaining the potential effects of these toxins for those who don't understand the risks.

Jeanne

Susie Collins said...

Great post! And thanks so much for your kinds words about me and my site. I'm happy that The Canary Report has inspired you to write more about your chemical sensitivity. The more we talk about MCS, the more people will understand the problem, and in turn, start to affect change. Together we are stronger! Keep up the good work!

Tracee said...

my mother is very sensitive to perfumes and scents. Couldn't wait to move out of the house and wear the Liz Claiborn and burn some candles.

But, alas. Turns out there are sensitive people everywhere.

Jeanne said...

Susie,

Thank you! Yes, together we are stronger!!

Jeanne :)

Jeanne said...

Tracee,

The trick is that you could develop problems down the line, as could anyone with so many toxins in the air nowadays.

The more people are exposed to toxins, the worse the problem will get.

Many years ago, before my MCS, I was a perfume-wearer myself. The same perfume I used to wear would knock me over now!

That's the sad truth. What's nice about Susie's blog is that it explains how MCS patients are like the canaries used in coal mines to prevent people from being injured or killed.

I'm glad you don't have MCS.

The fact that your mom has issues with fragrances helps you understand it better than many others.

Unfortunately, most perfumes contain hundreds or even thousands of harmful chemicals.

Some are carcinogens, some are neurotoxins, some are endocrine disruptors (yes... endocrine disruptors like you have blogged about).

The Skin Deep database on my blogroll is great for looking up known toxins in products.

The problem is that many chemicals are inadequately tested. Whereas you may not feel any short-term effects from your Liz Claiborne or other perfume, it COULD make you sick years down the road! Seriously.

I miss being able to wear perfume but I recognize that it went from pleasant to dangerous for me.

This could happen to anyone if given enough exposure to the type of chemicals their bodies are vulnerable to.

My sister forgot to skip her perfume this Thanksgiving. Guess who felt very faint and couldn't sit at the table with everyone else???

Jeanne

Kate said...

Hi Jeanne! Thank you so much for your comment on my blog, I really enjoyed reading and getting it. I am sorry you are having so much trouble with hair stylists and I know EXACTLY how you feel! I was quite panicked about how I was going to get my next haircut too until I figured out how to cut my own! I put an ad on the message board of the local health food store - perhaps that's something you can try? - and got one elderly woman who responded who sounded a bit not right in the head, and I considered trying it, but then Daffney said she'd do it and that was a much better option, lol. But it was kind of funny. Good luck!
I'm going to go read the rest of your blog - looks interesting. Feel free to visit mine any time - been kind of brain dead last few days but I am sure I will write again soon.
Kate

Jeanne said...

Kate,

Hi! Thanks for stopping by. When I read your blog post, I could really relate to the problem of, "where do I get my hair cut without having a bad reaction to chemicals?"

(For those unfamiliar with the risks to MCS patients of simply going to the salon, it is one of the toughest places to go to with all of the chemicals in the air).

For those unfamiliar with Kate's blog, check out her great post about the challenges of something as simple as getting a haircut:

http://libertyandhope.blogspot.com/2008/12/hair-today-gone-tomorrow-learning-to.html

Her blog is called "Chocolate, Music and Hope" and she describes very well (in the post listed above) how simple everyday activities like haircuts can become quite a challenge.

Kate, I hope you find my blog helpful. I enjoyed visiting yours.

Thanks,

Jeanne

Jannie said...

A very useful post.

I can relate to being bothered by all fragrances, as I experienced it during pregnancy. So I know what havoc it can wreak.

I believe it is a real problem for some people on a constant basis.

And I hope this will help spread awareness.

Jeanne said...

Jannie,

Thank you.

Yes, it can really be a challenge!!

It honestly trumps all of my other illnesses. It affects me so much. There are so many products I can't use.

I have to carry a small bottle of soap that I use at home for use in rest rooms (my dermatologist's smart idea when my hands were bleeding from washing with "regular soap").

I hope this will spread awareness too!

Thank you,

Jeanne

Alexandra Carmichael said...

Hi Jeanne,
Wow, what an impressive and thoughtful post about MCS. I have a couple of friends with MCS and it's such a challenge for them to function in the everyday world with its overwhelming array of chemicals everywhere!

Thank you for spreading awareness about MCS and helping everyone out there suffering from MCS, whether they know what it is or not.

You are an inspiration.
Alexandra

Jeanne said...

Alexandra,

Thank you for your kind words. It really is hard to avoid these harmful chemicals.

You make a good point that most people probably don't know what MCS is. Hopefully if enough people speak up and share their stories with those around them, that will change.

Alexandra, you always have something nice to say. Have a great day!

Jeanne

VardoForTwo said...

Aloha Jeanne,
The word is REALLY SPREADING, and I agree ... Susie Collins' The Canary Report is a major source of great information/insight/community building. Thank you for commenting on our blog. MCS is the illness few know about and many more choose to disbelieve. I began reading your blog(thanks to The Canary Report's blogroll) before reading that MCS is part of your life, too. My husband and I are re-creating our life because the choices people and our society have made threaten our birthright to breath without fear. I'll keep coming back to read you, and I love the music that makes you feel good ... that's a treat!
Much thanks. Mokihana

Jeanne said...

Aloha Mokihana!

The power of the Internet is a beautiful thing, isn't it? :)

I'm so glad Susie found my blog because now I'm all psyched up about spreading the word about MCS. You have no idea how many drafts I wrote on MCS previously. It's something I wanted to write about for a long time.

Anyone who knows me is well aware that I'm generally not at a loss for words. However, blogging about MCS has been harder for me than even other stigmatized illnesses because, as you said, there are so many people who just don't believe it.

People seem to have a hard time believing in conditions they can't see. If they see a person in a wheelchair, they know the person has limitations. However, invisible illnesses are viewed much differently.

While I have many illnesses that are poorly understood or even outright disbelieved (an example that comes to mind is fibromyalgia), I think MCS may be even trickier.

People don't want to believe they are doing something (wearing perfume, for example) that is making other people sick. They certainly don't want to believe they may be making themselves sick in the long-term.

Since chemicals can sometimes take years for their effects to unfold, people have trouble making the connection between triggering exposures and unfortunate reactions.

As any MCS patient can attest to, this condition is very real. It's not in our imaginations. It is something that can affect people who are currently healthy down the road.

Our society keeps turning more and more to fragrances and other chemicals. This is not healthy for anyone. We are just the ones who show signs much more quickly.

Just as the canaries were sent into the coalmines to let workers know whether it was safe for them, we are the first people to show symptoms that may well impact many more people as time goes on.

Unfortunately (and not to sound pessimistic), I think it's going to get worse before it gets better. From what I have observed, more rest rooms are installing the "air fresheners" (that can contain carcinogens among other things). This is just one small example.

There are many other ways in which fragrances are more ubiquitous now than before.

They didn't have plug-in "air fresheners" when I was growing up. Nowadays, thanks to TV ads and such... these are used quite commonly.

The perfumes they sell at the big department stores now make it very risky for me to step foot in those stores even briefly. Last fall I went in to buy one item and had to leave abruptly due to the perfume. It's really a shame.

I'm grateful that Susie listed my blog in her blogroll because it enables me to get connected with people like you. :)

I'm so sorry you and your husband are going through so much. My MCS was diagnosed in about 1993. However, it has gotten much worse.

Before my husband and I got married, I knew that he had dreams of building a house. After we got married in May of 1998, we broke ground for our house in June 1998.

I honestly believe that the varnish and stain I inhaled during the process of building our house (literally building it with our own hands) made me much sicker than before. Of course there were other construction-related items that didn't help matters.

Obviously, a new house can really be problematic for MCS patients.

Hindsight is 20/20. I guess I wasn't "sick enough" with MCS yet to comprehend how much the house-building process would impact me!

Yes, I was very sensitive even before we built the house. Yes, I knew I needed to really be careful. (I wore a mask while varnishing but I now know I had no business varnishing at all).

However, I didn't realize just how much more sensitive I would become from the whole house-building process.

It is a shame that so little is known about MCS by the average person.

I'm glad you enjoy the music. I installed that player after a blogging friend installed one on her blog. I liked hers so much that I created one of my own. I picked songs that make me feel better when I don't feel well.

Thanks for stopping by! :)

P.S. I tried and tried to add myself to your blog last night with the "follow" function. I had quite a bit of trouble. I've had people tell me that they tried unsuccessfully to "follow" my blog. I'm trying to figure out if I should even keep the widget at this point. It's not consistent. Sometimes it works and other times it doesn't. Have you had anyone else report trouble "following" your blog? Personally, I think it's a Blogger bug. I just wondered.

J said...

The video was very interesting with the woman with MCS - I liked her statement at the end about we're all created equally, but we aren't all created equally medically. I thought it was very well said.

Jeanne said...

J,

I know... I loved that video.

Susie Collins of The Canary Report had that video posted on her MCS blog and I just had to use it on my blog because it was worded really well.

Have a great day! :)

Jeanne

Squidgeaboo said...

As my Mother taught me- Perfume is meant to be enjoyed by you and one other person! I think we all overdo things nowadays when it comes to scents. My perfume should really only bother you if you have your nose behind my ear - if anything else, I'm wearing too much! I'm only being a bit fascetious. I know that with MCS a perfume bottle unopened three houses down can sometimes be a problem.

I was in the hospital with a migraine several years ago. I was screaming that one of the nurses was wearing Giorgio perfume and it was exacerbating my headache. They all pooh-poohed me. When the next nurse came on shift 20 minutes later I asked her what perfume she was wearing - you guessed it! It was Giorgio! I've never doubted my nose. I can tell when my kids are getting sick, when my husband is stressed and not telling me!

As for being sprayed without permission in a department store: I equate that with assault, and I don't know if I would let it go so quietly. Good on you for puking on her, though! Maybe she will think twice. The store's attitude is reprehensible. Maybe I'm just a cranky old bitch, but I tend to take those situations a bit more dramatically. If you have a systemic reaction like vomiting, what happens if they spray someone who has an anaphylactic reaction and they die? It could happen very easily - just because it hasn't doesn't mean they shouldn't think about it... Harumph. So there.

Jeanne said...

Squidgeaboo,

I like your mother's thinking. I wish she'd teach her philosophy to some people I know!! :)

You are very correct that it is possible to smell perfume right through the closed bottle! This concept is very hard for some to grasp but very true. I can’t help but worry about who might forget to skip the fragrances on Christmas Day this year. My dad will always wear his cologne no matter what I say. So I just have to keep my distance from him. That may sound mean but I would risk passing out if I didn't keep my distance!! If that bothers him, he needs to stop smoking AND remember lay off the cologne because he is way too risky for me to go too close to!

Yes... I get the "3 houses down" part too. Again, this is almost impossible for people who aren't that sensitive to understand!

My sister accidentally wore her perfume and her scented hair product on Thanksgiving this year and I couldn't sit at the table with everyone else!

After dinner she changed her shirt, washed her perfume off the best she could, and ran baking soda through her hair to try to neutralize the smell. Believe it or not, this helped enough that I was able to sit pretty close to her the rest of the day. She kept apologizing because she knows how very sick it makes me. She has her own scent-sensitivities and felt terrible that she had forgotten that I'm even more sensitive than she is. (She too has passed out simply from inhaling things)! So I really appreciated her efforts to get rid of as much perfume/hair product scent as possible. If she didn’t have first-hand experience as she does, she would never have thought to take the baking soda/change of clothes measures as she did. I didn’t even say a word. As soon as she realized I was having a reaction (a BAD reaction w/multiple symptoms including feeling faint!), she scooted away from me to exercise some damage control. That meant so much to me because we would have had to leave early otherwise! (We were at my parents’ house that day).

I hear you with the hospital story too. One time I went to the dentist and there was a HORRIBLE cologne smell!!! It was INSTANT nausea and dizziness when I sat in the dental chair. I commented on it. It turned out the patient about 4 people before me IN THE NEXT ROOM OVER from the cleaning chair I was in had had really bad cologne, according to the hygienist. The hygienist nicely opened the window immediately (despite the fact that it was about 30 degrees and snowing that day).

I travel 45 minutes each way to this dentist’s office specifically because this dentist is aware of my illnesses and he really “gets it”. He “gets it” because his son was born a preemie (1 pound and some ounces/almost didn’t make it) and his son is very sensitive to smells. So their office makes sure to do everything humanly possible to help me. In the time it took for a quick cleaning of my teeth, I still got really dizzy and ended up FALLING SLEEP AT THE WHEEL ON THE WAY HOME from the dentist. It was DEFINITELY the cologne that put my body over the edge that day and knocked me out while I was driving. (That day I didn’t get enough warning to pull over in time)!

The dentist's office smells (in any dentist’s office I have ever been to since diagnosed with MCS) are bad enough. The cologne on top of it (plus my meds that can sometimes make me drowsy) were just more than my body could handle that day. Thank God I woke up when my car swerved into the next lane. One minute I was awake and the next minute I was out. Can you imagine??

If his cologne was bad enough to bother the hygienist the next room over (keeping in mind that she can stand the smell of working in a dentist's office all day!), can you fathom what it did to me? I was so scared when I woke up after that car swerve that I swore I'd never drive home after an exposure that made me feel that horrible dizzy feeling. Of course, I don't have a personal chauffeur (!) so that means calling my poor husband to leave work to pick me up once in a blue moon when I react like this (!) but that's better than hurting someone/myself with a fragrance-induced car accident!

People just DO NOT understand how sick fragrances can make some people. If they had even an inkling, no one would wear fragrances simply because they'd understand it can actually become a safety issue if a chemically sensitive patient is operating a car or machine following an exposure to a simple cologne.

I’m sick & tired of people thinking I’m just being a pain, that it’s just an annoyance to me that I should be able to quietly handle, and that I need to just “be more tolerant”.

IT MAKES ME SICK ENOUGH TO KNOCK ME UNCONSCIOUS PEOPLE!!

Many fragrances have toxins that are carcinogenic and that are not healthy for ANYONE to smell (whether they realize it or not). I read an amazing article on air fresheners the other day on The Canary Report. There are TOXINS in these things… things that are placed in just about every public rest room now.

MCS patients just happen to be the first people to react to this stuff but in the long run ANY person can become sensitive this way (such as the 911 first responder woman who was in the video clip). Once a person is exposed to whatever puts his/her body over the edge, MCS can easily be the result. Anyone can wind up with MCS if they have been exposed to a particular pesticide or toxin that damages their body and causes such extreme sensitivity.

I look back and cannot comprehend how I ever wore perfume. I just can't even believe my body could ever tolerate it… when I now am as sensitive as you so capably described in your ‘Giorgio at the hospital’ story.

In my house we call what you described in the Giorgio story as the "my nose is never wrong" syndrome. I have smelled gas leaks before anyone else (a couple of different times). One time the gas company sent someone out to my apartment. Sure enough their equipment found a leak. The man said, "I don't even smell it but you're right... there is definitely a leak"!!

I once smelled a nasty, bitter smell in our current house. I didn't recognize it. As it turns out, our propane tank had gotten lower than ever before because we hadn't had it filled in so long (thanks to my medical bills)… Well, the tank is under pressure or something, I guess? (My husband could explain it to you in detail after his chat with the propane company. His engineer brain understood it better than I did but here’s the main idea)… The remaining residue of propane gases in the near-empty tank flowed back into the basement because they were under pressure (through the hot water heater connection point, I believe) and I could smell it!!

Once I tracked the smell to the basement, I called my husband at work and told him about it. I told him it REALLY smelled bad! He thought and thought. (He grew up in the country and is more familiar with propane than I am. I was clueless). He asked me if it smelled bitter. I said, "yes, why?" He said "get out of there"!

He called the propane company. They came out and verified that the propane tank was way lower than it should ever be (it was a very cold winter and we had run out of wood for the woodstove… and we had been using the furnace - which used lots more propane than we were used to using).

Anyway… if I had used the dryer, apparently, a spark could have caused the propane to ignite and blow the whole house up. (My husband got a lecture from the propane truck driver about never, ever letting the tank get so low. We used to get it automatically filled at the expected half-gone mark but my medical bills caused my husband to do away with the half-gone policy that year because we couldn’t afford to get it filled then. So the propane company hadn’t been out in awhile and we had no idea it was so low because we had never used that much propane any other year)! Needless to say we check the meter on the propane tank often now to ensure that never happens again!

So my husband has learned that if a smell bothers me, we need to take it seriously and find out what it is because it could be a safety issue. (I think I need to turn this comment into a post at some point... I may be breaking my own record for length here)!!

As far as the vomiting, that was actually Melissa not me. Melissa was the one who vomited on the perfume lady when she was sprayed against her will. In my case, I would have been nauseous alright. But instead of vomiting, it probably would have just knocked me unconscious. (I kid you not)!

You are correct that the store totally mishandled it. I think most people simply DO NOT “get it” at all that someone cold be that sensitive. You'd think that the instant vomiting would have clued the perfume sprayer in that it was involuntary… but clearly she was INSENSITIVE enough (no pun intended… get it?) to suggest that Melissa shop elsewhere!!

The notion that a store would rather turn customers away rather than simply ask their perfume sprayer people not to spray anyone against their will boggles my mind! Of course, having a perfume sprayer person at all boggles my mind. Seriously, though, wouldn’t you think that if ANY customers are vomiting on the perfume sprayer’s shoes from the involuntary-spraying that maybe ***JUST MAYBE*** the stores would realize that some customers simply cannot handle these fragrances??? As Melissa pointed out, if they located the perfume counter *anywhere* besides the main entrance to the store it would be much better. Clearly the involuntary-spraying is unacceptable.

You make a very good point! There are people who go into anaphylactic shock after such exposures. That is an excellent point!!

What if such a person dared to (oh gee… I don’t know) SHOP in a STORE {gasp}… and they got sprayed as Melissa was?? What if they did go into anaphylactic shock before they could pull out an epi-pen??

I had never really thought about it that way because my nose warns me so far ahead of such fragrances that I avoid going anywhere close enough to get sprayed in the first place. However, I have heard of people who go into anaphylactic shock as you mentioned. Not all sensitive people have smell as such a “head start” clue as you or me. What do those who are at risk for anaphylactic shock from fragrances do? Stay home? I hope to God my sensitivity doesn’t keep getting worse (as it had been the last few years). God forbid that could be you or me next with escalating to the anaphylactic shock risk. As sensitive as I am and as sensitive as you are describing that you are, it’s just scary. The more exposures I have the more sensitive I get. I don’t want to be the MCS patient who has to stay at home for fear of anaphylactic shock. (No one should be in that position)!

Sure, I can shop online for department store stuff (not that I should feel required to do so… as the woman Melissa encountered apparently thinks) to avoid the fragrance counter.

However, what about going to the dentist? Is that next? I can’t go to the dentist?

Already I can’t go in the half of the store containing the soap/detergent aisle. God forbid if I go to Target and need to go to the electronic department. I have to walk way out of my way AND hold my breath to bypass the soaps/detergents. Am I going to be one of those very unfortunate anaphylactic shock-type MCS patients next? Are you?

The scary thing is that the more people are exposed to this stuff the more sensitive they get. I’m only 39 years old. Will I be homebound in my later years due to fragrances I can’t control? I already can’t go to certain friends’ homes because of the candles they use. What’s next?

It is all very upsetting!!

Squidgeaboo, you have inspired about 3 new posts with your comment here!! Your Giorgio story alone made me stop and think of just how hard I work to avoid fragrances. I’m just on auto-pilot now for this stuff but I am working harder on avoidance than I realized until I stopped to really think about it.

Wish me luck getting my hair cut tomorrow. I scoped out a new salon closer to home after asking many questions like, “is there a time of day when you’re REALLY slow that I might be able to come in?” The perms and colors could easily knock me out. I will be customer #1 tomorrow morning before the smell-fest begins at the salon. Let’s hope I can tolerate the smells as well as I did when I popped in to smell the place before booking an appointment. (The woman who has been cutting my hair is out on leave so I had to find someone else).

Please wish me luck that I make it through tomorrow’s haircut unscathed!

When smells are unavoidable (like your hospital story), it really is an assault!

Liberty said...

hi Jeanne,

I have both endo and MCS too! it's interesting noticing how certain health conditions are co-morbid. I also have fibrocystic breasts. I haven't read much of your blog yet so haven't found out if you get migraines as well (another biggie for me).
I add in my vote for avoiding anything with ozone! I get very sick from it - even from ozone emitted from certain electronics. I hope your haircut went alright! I haven't had one in years because of MCS.
Thanks for talking about MCS on your blog. I came across it via the Canary Report Blogroll. :-)

Jeanne said...

Liberty,

Thanks for visiting my blog! I just visited yours and added myself as a Blogger "follower" there.

I wanted to comment on your neuroplasticity post but was having trouble getting comments to work for some reason.

I had seen a fascinating PBS show about neuroplasticity of the brain awhile back. It was just amazing!

Anyway, it sounds like we have quite a few conditions in common! It's always nice to connect with others who "get it"!

I have connected with quite a few patients sharing the conditions you talked about through blogging.

Yes, there are so many co-existing conditions!! It really makes you wonder what researchers will find some day, doesn't it??

I know many people who have both endo and MCS. Just at the local support group level alone, it has struck me how common a combination this is!

There are so many other illnesses that seem to commonly co-exist...

It really is incredible how much overlap there is between symptoms/conditions. (Most women I know who have endo have a good handful or more of illnesses).

Here is a blog that may be helpful for you:

Rhymes with Migraine --

http://rhymeswithmigraine.blogspot.com/

Yes, that ozone-generating "air cleaning machine" was truly horrendous!!

For those who aren't familiar with the ozone machine topic referred to here by Liberty, please see a very interesting report by Susie Collins' on The Canary Report:

http://www.thecanaryreport.org/2008/12/09/warning-avoid-air-machines-that-generate-ozone/

This ozone-generating "air cleaning" machine is, from what I have read, part of a major marketing scam... and it is unbelievable to me that these machines that can very well harm people are sold as helping them!

This is especially concerning considering that these machines have been marketed to those who are vulnerable with various health problems, including asthma.

It is very upsetting to me that this marketing practice is allowed.

I did lots of research on these machines and was shocked at what I found. (Again, see the link above from The Canary Report for lots more details on this issue).

I'm curious about the ozone-emission you mentioned from certain electronics and would like to know more about it!

I was very, very lucky with that last haircut! I found a new solution for getting a haircut that doesn't cause me to fear passing out from fumes in the salon. Thank goodness!!

(For a post about the challenges of a simple haircut, see this blog that is written by Kate... an MCS patient):

http://libertyandhope.blogspot.com/2008/12/hair-today-gone-tomorrow-learning-to.html

It is amazing the lengths one needs to go to in order to accomodate MCS! Something as simple as a haircut becomes such a big deal!

You certainly don't need to thank me for writing about MCS! :)

I'm just so happy that Susie Collins found my blog because it has helped me connect with so many other MCS patients such as yourself.

I hope you'll check out my blog further.

I'm sure, based on what you've said, that you will find items of interest to you!

So please come back to visit!

Jeanne

Liberty said...

Hi Jeanne,

My understanding is that a number of electronic devices can emit small amounts of ozone (or, in the case of office sized laser printers, larger amounts). The levels are not usually high enough to bother healthy people but someone with MCS or asthma may be affected. Some electric heaters, for example, have a very small spark when they turn on and off. Any time a spark happens, ozone can be created. That's my understanding anyhow :-)

Thanks for visiting my blog!
I actually have comments turned off right now see explanation: http://tinyurl.com/94wcdz

My apologies for any inconvenience :-) I hope to have them back up soon.

Have you read Dr. Martin Pall's book? http://tinyurl.com/797mqh
He has a theory for the high occurrence of comorbidity of certain health conditions that really clicked for me. (NFI)
He focusses on only a few (MCS, CFS, FM, PTSD) but does go on to say that he feels there may be many other conditions that fall into this new 'disease paradigm'.
I personally wonder whether endometriosis could be one.
warning: It's pretty heavy reading! Lots of science (that was mostly over my head).

More can be read about the 'Tenth Paradigm' here: http://www.geocities.com/tenthparadigm/tenth

-

I'm glad your haircut turned out well!
and thank you for the migraine blog link :-)

Jeanne said...

Liberty,

Sorry for the delay in posting your comments. I am more than a bit behind on email and comment moderation as I was out of town this past weekend and there has been a death in the family.

Thank you for the info on ozone-emitting devices. That's interesting. Since I have MCS and my daughter has asthma, I would appreciate if you could direct me to any resources on this.

I am not familiar with Dr. Pall's work. What does NFI stand for?

I took a quick peek at the paradigm link you sent. I didn't get to read through it as thoroughly as I would like to; I'm afraid I'm pretty pressed for time right now.

Thanks for your comments. :)

Jeanne

Liberty said...

hi Jeanne,

no need to apologise!!
I'm so sorry to hear of your loss.
I hope that your trip was safe.

-

sorry for the unexplained short form NFI :-) it means no financial interest.

-

Dr. Martin Pall's stuff is really neat though very technical.

here's a short example:

http://tinyurl.com/2ka36l

other things can be found through a google search. there are some interviews, articles etc.

his book, which I have, is very good and I really enjoyed the part where he debunks the idea that MCS is a somatoform/psychosomatic condition.

the Tenth Paradigm site is focussed on Dr. Pall's proposed 'Tenth paradigm' of illness. I hadn't even know there were 9 previous paradigms LOL!

I wish I had some info to share with you about ozone emitting devices. all I know is that laser printers can be a particular issue. anything that creates a spark (eg electric heater going on and off) has been an issue for me personally. tvs are also an issue for me but I don't know if it's due to ozone or if it's other chemicals outgassing.

If you find your daughter reacts to ozone in the air, you might want to find out if your area has an air quality monitoring service. then you can be aware of when the ozone outside is higher and close windows and/or limit exposure or limit exercise.

take care :-)
Liberty

Jasmine said...

Excellent post Jeanne! I wanted to also thank you for stopping by my blog and commenting. Like you I recently discovered The Canary Report and just love it. Susie does an amazing job.

Jeanne said...

Jasmine,

Thank you! I'm glad you liked it.

I'm happy to have found your blog (actually you found me first, huh)?? :)

Seriously, I'm glad to have connected with you. I absolutely agree about how terrific Susie Collins' blog "The Canary Report" is!

Hint hint, everybody... check out Susie's blog if you haven't already. If you are reading this post, you're sure to enjoy her blog:

http://www.thecanaryreport.org/

Jasmine, thanks for stopping by! :)

Jeanne

P.S. Readers here will surely find this post very interesting:

http://jasminepw.blogspot.com/2008/12/judge-says-perfume-lawsuit-can-proceed.html#links

Jeanne said...

Liberty,

Thanks for your understanding as I try to get caught up on moderating comments (with limited success, I'm afraid).

Thank you for the kind thoughts. Our travel was safe both ways. Unfortunately I got quite ill while out of town. (The only thing worse than being really sick at home is being really sick away from home, I have found).

Thank you for the info on Dr. Pall. My reading list just keeps on growing! :) Seriously, check back with me later and remind me to read it if you haven't heard from me.

Sadly, there are not enough hours in the day for me to read all of the books and blogs and emails I would like to. So feel free to remind me later. :)

I'm used to reading technical stuff so that won't scare me. Over the years I have gotten used to wading through unfamiliar terms and figuring out what they mean. :)

I appreciate you sharing the info. That is one of the great things about connecting with others who have shared conditions... it greatly increases access to resources!

I appreciate you taking the time to clue me in.

Anyone who debunks the idea that MCS is psychosomatic sounds good in my book. It's so hard to not be believed!

Hmm. That's interesting about the ozone-emitting devices. There's always something new to learn! I know the many hours I spent researching the Sharper Image ozone-generating "air cleaner" made my head spin.

It just appalled me that they were charging nearly $500 for a machine that supposedly cleaned the air, was targeted at asthmatic patients, and not only didn't live up to its claims but worsened the air quality.

[To protect myself here... I'll insert this disclaimer... I contacted numerous respected organizations and read many reports on these machines and the evidence against them was overwhelming to me].

Thankfully, my daughter's asthma has GREATLY improved since she began pediatric acupuncture!! She takes far less medicine and is MUCH healthier.

She used to sit out of gym occasionally and make frequent trips to the school nurse for her inhaler.

She has not used her inhaler or her nebulizer in OVER A YEAR now. (She used to use them daily during some parts of the year). I don't think it is a coincidence of timing that her inhaler/nebulizer use stopped being necessary right when she started acupuncture!!

Thanks for all of the great info and I appreciate your comments (and patience). :)

Jeanne

Liberty said...

Jeanne that is SO great about your daughter benefiting from acupuncture! I love hearing things like that.

I hope you are recovering from your trip

:-)

Jeanne said...

Liberty,

Yes... it is such a thrill to see just how profoundly the acupuncture has improved my daughter's asthma. It's truly amazing!!

I'm trying to get back into the swing of things.

Thanks for commenting and I look forward to connecting with you again soon! :)

Jeanne

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