Category — Multiple Chemical Sensitivity

Since 1982, I have lived with endometriosis. It took me 10 years to finally have a laparoscopy and be properly diagnosed with it but I have lived with it for 28 years now. It is important to me to begin by saying that I have met some of the most caring, compassionate, supportive, loving women in the endometriosis patient community (online and off). In the last two years online and in the years I participated in local (in person) endometriosis support groups (1992-2008), I have had the good fortune of meeting some of the most amazing people! It is important to me to note this up front because I am about to write what may end up being a controversial post. My purpose with this post is definitely not to upset anyone but to draw attention to a matter that I believe needs attention and analysis. So, I will be sharing my opinions here. In my daily activities online, I perceive an imbalance between endometriosis patient advocacy work and patient advocacy work for other chronic illnesses.

Before I proceed, I also want to be clear that I ordinarily am not a fan of comparing one illness to another or comparing one patient to another. Everyone is unique and different. At the same time, I believe that comparing and contrasting can sometimes be a useful means of getting context. Sometimes, comparison is helpful because it shines a light on differences that may indicate where there is room for improvement. So, please hold your hate mail and understand that I am writing this post (which I have been mulling around in my mind for many months) because I LOVE my fellow endometriosis patients very much.

That said, let me start by directing you to comments I exchanged with Jenn in the blog comments section for this post: MCS Letter To Oprah. See comments 5-8 for our exchange.

Over many months, I have observed a large imbalance between the level of patient advocacy work done on illnesses such as multiple chemical sensitivity (MCS) and ME/CFS and the patient advocacy work done by endometriosis patients. MCS and ME/CFS patients I encounter online daily are, as a general rule, more likely to engage in letter-writing campaigns, petition signing, and information sharing than endometriosis patients. These patients are very ill… just like endometriosis patients. These patients have poorly understood conditions… just like endometriosis patients. These patients are faced with many frustrations and challenges… just like endometriosis patients. However, for whatever reason, MCS and ME/CFS patients are more tightly organized in their advocacy (from my perception) despite the fact that many of them are ill enough to be housebound or even bed bound.

Let me give one example. I posted this XMRV retrovirus petition recently (a petition that many ME/CFS patients are interested in):

Petitions by Change.org|Start a Petition »

At the time I posted it (very recently), I believe it had about 40 signatures. It now has 893 signatures.

Our endometriosis petition was started in 2008. While it is wonderful that we have 633 signatures (many with passionate comments attached), I am left wondering why we don’t have far more signatures than that…

An estimated 89 MILLION women and girls worldwide have endometriosis!

“It is estimated that between 2 percent and 10 percent of American women – or 5.5 million women and girls – of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility”, as per Ohio State University Medical Center.

Now, my blog has far more endometriosis readers than ME/CFS readers. Yes, of course, the XMRV petition is posted all over the Internet. There again, though, endometriosis patients who wish to post the endometriosis petition can post it widely too. Many people reading this post already have posted the endometriosis petition badge on their sites. The thing is that if endometriosis patients were as well organized as ME/CFS patients or MCS patients, I firmly believe that the petition could be posted on far more sites and could have garnered far more signatures by now.

As I’ve watched the number of signatures on the XMRV petition multiplying exponentially, I could not help but wonder why I sometimes feel like I’m pulling teeth to garner signatures on the endometriosis awareness petition. Many people have worked hard to get the word out about that endometriosis petition and I’m not trying to take anything away from the fact that we’ve gotten 633 signatures to date. At the same time, I can’t help thinking that we should have more signatures than we do. We’re talking about a condition that is “more common than AIDS and more common than cancer”! I just don’t think enough people are seeing the petition. This is where the teamwork and organization comes into play. I hate to say it but my perception is that endometriosis patients are not as organized as some other patient populations. I’ve reached this conclusion after what I have seen online in the past two years.

To be clear… I would never, ever want anyone to feel that I am criticizing endometriosis patients in any way, shape, or form. Endometriosis patients have numerous hurdles and challenges because of their illness. Many endometriosis patients have co-existing illnesses such as fibromyalgia, interstitial cystitis, or irritable bowel syndrome (IBS)… to name a few. I understand this because I have all of the above (and then some) myself.

My goal with this post is to shine a spotlight on what I view as an opportunity… for endometriosis patients to engage in more teamwork, increased networking with fellow patients, and more information sharing. Having participated in endometriosis support group meetings (monthly, in person) from 1992-2008, I have met a great number of endometriosis patients in person. In blogging since 2008, I have “met” too many endometriosis patients to count online. My goal is to encourage endometriosis patients to think about whether there is anything they can do for the endometriosis cause that they haven’t.

To be sure, I don’t have a magic list of things people can do to take action. I am just including a few suggestions.

Five ways to help the endometriosis cause:

1) Please sign the endometriosis petition if you haven’t already. If you have already signed, why not ask your friends and loved ones to sign it too? There is strength in numbers. Signatures accompanied by personal comments are particularly effective.

2) Post the petition badge – such as the blue one above – on your site if you have a website or blog. This will give your readers the opportunity to support the endometriosis cause. (If you are interested in obtaining the code for the blue petition badge – which automatically counts up every time someone signs it – please simply leave a comment on this post and I’ll be happy to email the code to you. Then it’s just a quick copy/paste to have the same petition badge posted on your site)!

3) Don’t have a site? No problem! Why not share this link to the petition on your Facebook page, on Twitter, or in an email to friends and loved ones who might love a way to support you by supporting the endometriosis cause? (Loved ones are often grateful for a tangible way to help endometriosis patients… since this illness can cause feelings of helplessness).

4) If you haven’t already done so, check out this post: Endometriosis Advocacy and the Media (Re-post). It explains a case where we put the petition to use in pressuring the media to correct errors that were printed about endometriosis – in a syndicated column that was written by a gynecologist! Our voices were heard by the editorial staff of this newspaper!

5) Last but most certainly not least, please contact Endochick (see email address below) regarding the endometriosis research she is conducting as part of her graduate school studies in pursuit of a Patient Safety degree. She cares very deeply about endometriosis and is working to improve communication between endometriosis patients and physicians, among other things.

If interested in the endometriosis research mentioned in the post above, please e-mail:

“endochick 80@gmail.com”

Please remove the space between endochick and 80 when e-mailing and put RESEARCH in the subject line.

This is just a very short list that may serve as a jumping off point. I don’t have any magic answers for how endometriosis patients can get better organized and become more involved in advocacy work on behalf of the endometriosis cause (and the 89 million patients worldwide who have endometriosis). I realize that many endometriosis patients are too sick, busy, and tired to become tireless advocates for endometriosis.

I also strongly believe that every little bit helps.

If enough endometriosis patients join forces and work together as a team, endometriosis advocates could become every bit as effective as the multiple chemical sensitivity (MCS) advocates and ME/CFS advocates I encounter online every day. When I see friends online who are multiple chemical sensitivity (MCS) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients (many who are housebound or even bed bound) who are writing letters, calling their legislators, signing petitions, etc., I cannot help but wonder why there is so much less of this activism with endometriosis patients.

Helping the cause doesn’t necessarily have to be time-consuming! Signing the petition takes just moments. Posting it on a blog takes moments too.

Contacting Endochick is fast and easy!

Again, here is her email address:

Endochick’s e-mail “endochick 80@gmail.com” (just remove the space between endochick and 80 when e-mailing)

I strongly encourage endometriosis patients to contact her regarding her endometriosis research.

When I picked the title for this blog post, I did not mean to upset anyone. I named it “Endometriosis Apathy?” because I KNOW how passionate endometriosis patients are but I don’t see the same level of patient advocacy for endometriosis as for some other chronic illnesses. Actions speak louder than words. I have heard, in words, how utterly devastating endometriosis is for patients. I would love to see the passionate words that have been expressed to me again and again turned into action on behalf of the endometriosis cause… and the 89 million patients who live with it.

Any one of us alone can be left feeling like we might as well be climbing mountains when we ponder the idea of doing advocacy work for endometriosis. It’s true that many of us are not physically capable of climbing mountains in the literal sense. However, I believe that working together enables us to “climb mountains”.

By getting more tightly organized as a team of passionate advocates, we CAN make a difference. Let’s do it!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

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>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Photo: Katy Winn/Getty (Source: Huffington Post)

Today I read this:

This weekend, let’s all send a message to Oprah about Multiple Chemical Sensitivity

I then decided to write in to Oprah regarding multiple chemical sensitivity (MCS) as per Monique van den Broek’s request on Susie Collins’ The Canary Report.

Bearing in mind that there is a 2000 character limit when writing to Oprah (and anyone who reads this blog knows how challenging it was for me to keep it to 2000 characters), here is the letter I sent today to Oprah regarding multiple chemical sensitivity (MCS) :

Dear Oprah,

My name is Jeanne. I have multiple chemical sensitivity (MCS). I’m in the U.S. & was diagnosed in ‘92. I have many other chronic illnesses including 1 that has resulted in 7 surgeries. However, at this point in my life, the illness that has the biggest impact on me daily is MCS. I can’t pump my own gas. Mall trips are a thing of the past. Toxic fragrances emanating from stores with candles & bath/body products make me get dizzy, nauseous, feel faint, have trouble breathing, etc. & make it too dangerous for me to be in a mall. My husband does the grocery shopping because the detergent aisle alone makes so sick. “Air fresheners” have become ubiquitous in public places like rest rooms. (Due to my other chronic illnesses, I have a need for rest rooms more than most people; these “air fresheners” are a serious problem)!! These products contain toxic fragrances unregulated by the gov’t & known to contain carcinogens, neurotoxins, and/or endocrine disruptors. Fabric softeners contain many toxins & there are times I have to step away from a person whose clothes are so coated in fabric softeners and/or detergent that I become ill simply from standing next to them! Some MCS patients have a definitive light bulb moment where they know their MCS started. Others, like me, had a more gradual onset. I’ve been chronically ill since I was 13 years old; I’m now 41. I think my body was vulnerable to developing MCS due to the nature of pre-existing chronic illness plus exposure to medications & environmental factors that acted as triggers. I have severe reactions to exhaust fumes, commercial cleaning products, “air fresheners”, perfumes, cigarette smoke, etc. With the devastating oil disaster in the Gulf, there will sadly be more & more patients getting MCS. Already there have been cleanup workers who’ve sought medical care for MCS symptoms. Many MCS patients are housebound or homeless. This serious illness needs attention!

Thank you,
Jeanne

Readers here most likely know that what I meant when I said “Due to my other chronic illnesses, I have a need for rest rooms more than most people; these ‘air fresheners’ are a serious problem)!!” was that illnesses such as interstitial cystitis, endometriosis, and irritable bowel syndrome require me to use rest rooms more frequently than most people.

So, aside from becoming housebound by my MCS (a possibility which I try not to think about even though I know it could happen to me), that means that I get exposed to even more of those toxic “air fresheners” than an average person would. The last thing I need is to be inhaling “air fresheners” . However, if I am out and about… rest rooms are not optional. So, I continue to be exposed to these on a regular basis and it makes me furious.

Do you have MCS? Perhaps you don’t have an MCS diagnosis but you clearly have some issues with chemical sensitivity? Will you write to Oprah to draw attention to MCS?

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Fasten your seat belts. This is going to be a long post. I’ll try to consolidate as best I can. This is not going to be a “warm and fuzzy” post. I should warn you about that up front. However, I believe it’s very important. So, please bear with me and I will try to end the post on a brighter note than it starts. There won’t be any magical solutions to all of the grave problems covered in this post. However, I will leave you with some great resources for taking positive action. I believe having the ability to take action beats feeling helpless any day. So, please bear with me.

Why am I writing about plastic and oil? What do plastic and oil have to do with chronic healing? Stay tuned and I’ll try to connect the dots between what is happening with the oil disaster in the Gulf and plastic consumption. I’ll also try to connect what all this has to do with health. As far as why I’m writing about Dawn… we’ll get to it.

Let me begin by directing you to the amazing post Susie Collins wrote:

A timeline of health horrors caused by the BP oil well blow out

If you’re anything like me, reading Susie’s excellent, comprehensive post brings up emotions of sadness, frustration, and anger. As a multiple chemical sensitivity (MCS) patient, watching people in the Gulf on TV without respirators or protective gear makes me cringe. Clean up workers are already visiting their doctors with symptoms of multiple chemical sensitivity.

Now, I would like to share a video with you. I should forewarn you that it will not be uplifting. It’s downright eerie. However, I think it is important in that it shows how sometimes history repeats itself:

If you made it through Susie’s timeline and Rachel Maddow’s video clip, you may be feeling pretty upset. I know that was the effect on me.

Please bear with me. I would like to share another video but I want to post a strong TRIGGER WARNING for my infertile friends for this one. I would like to emphasize that this particular video is cringe-worthy for several reasons. The man who filmed it handles the oil with his bare hands. It gets worse in the video. I am posting this so that people can see how badly this particular Florida beach has been affected and, even more so, so that you can see how nonchalant people are about walking through and swimming in the oil. Clearly this beach shouldn’t be open but do these people really need someone to TELL them not to use it?

TRIGGER WARNING:

I want to try not to get too tangential but I would like to mention the fact that I got pretty fired up on some Facebook threads on my wall yesterday. If you would like to see the conversations on those threads, I’m afraid you’ll have to send me a Facebook friend request because it’s too long to get into all of the details here. Let’s just say that I got fired up about PR for Dawn dish soap. Dawn (manufactured by Procter & Gamble) is running ads like the one below. (Please note that I do not normally make a habit of including ads in blog posts but in this case I think seeing the ad is important to understanding what I got fired up about). I know this post is getting pretty long but please stay with me (after the ad below) to learn what my issues are with it.

In general, I believe this is a public relations campaign to boost Dawn’s image and to increase sales by exploiting the situation in the Gulf. Interestingly, I discovered a site called Corporate Watch yesterday that identified Richard J. Ferris as being both on the Board of Directors of British Petroleum (BP) and a “non-executive director” of Procter & Gamble (P&G) — the company which makes Dawn.

Oh. By the way, did I mention that Dawn is made from petroleum products?

Oh, the irony: Dawn saves wildlife with oil-based dish soap

Also, from the Washington Post:

Dawn dishwashing detergent saves wildlife

Anyway, back to Dawn’s PR campaign. If you read the fine print, you’ll see that in order for Dawn to donate $1.00 to one of the wildlife organizations they are donating to, the customer who purchases Dawn must access this (website) to input a code from the Dawn bottle. One would think if the company’s real motivation was to help these wildlife organizations, they could just make a straight donation to them up front. One wouldn’t think it would need to be tied to how many bottles of Dawn were purchased. One certainly wouldn’t expect to need to go online to enter a code from the Dawn bottle to a website to trigger the donation to a wildlife organization.

However, the latter method is how it works… or is supposed to. When I tried going to the site to look into this “donation activation” process, a pop-up marketing screen appears!

Why a marketing survey needs to appear when someone is taking the time to go online to the Dawn site to try to activate the $1.00 donation to wildlife organizations is beyond me. Well, actually it’s not beyond me. It is reinforcing my belief that Dawn (Procter & Gamble) is more interested in their own profits than in helping animals).

Please note: I have heard from a couple of Facebook friends about their knowledge or experience regarding the use of Dawn for cleaning wildlife. I am well aware that Dawn has been used this way for years. (I should note that I do not believe that proves that it’s safe). I will state here, at I have stated on Facebook, that I am not an expert on what is or isn’t safe for cleaning wildlife that have been exposed to oil. The main thing I wrote about on Facebook yesterday regarding Dawn was related to the PR campaign and links between BP and P&G. I have never personally used any products to clean wildlife victimized by an oil spill and don’t know what the safest, most effective method is for cleaning wildlife. That wasn’t really the main point I was trying to get across on the various Facebook threads about this. I appreciate all of the feedback people have provided on Facebook.

For possible alternatives to Dawn for cleaning wildlife, please see the comments section of Oh, the irony: Dawn saves wildlife with oil-based dish soap. Again, I am not an expert on the best methods for cleaning wildlife exposed to oil. I do know that I have issues with Dawn’s marketing approach which I believe exploits this disaster in the Gulf.

After checking out the Dawn site survey (which I won’t bore you with), I proceeded to the screen that talks about activating the donation. After all, I hadn’t reached the field for entering the code for the Dawn bottle yet. So, the site had no way of knowing I am not really a Dawn customer. I clicked the “activate your donation” button and it gave me a message advising me to reload/refresh my page. I did this several times. Each time, I got the same error message. So, I never did make it to the screen that is supposed to activate the donation. I just kept popping back to the screen below after attempting to reload the screen:

Yesterday, I came across this:

National Survey Reveals More than 70% of Americans Don’t Know Plastic is Made from Oil

As stated in the link above:

“Plastics are everywhere and most Americans have come to rely on plastics in all aspects of their lives. However, very few people realize that plastics are made from oil, further contributing to the problems of energy dependence, greenhouse gas emissions and depleting resources. In fact, nearly 10 percent of U.S. oil consumption – approximately 2 million barrels a day – is used to make plastic”.

So, plastic is made from oil. The more plastics we use, the more oil is used to produce the plastics. The more oil is used to produce the plastics, the more dependent we are on oil.

We’ve seen where oil dependency gets us.

What can we do about reducing our dependence on oil? Let’s look at our use of plastics. I’d like you to meet, if you haven’t already, two bloggers who are fierce advocates regarding plastics. Beth and Taina are wonderful resources for how to go about making positive changes.

The video below was made by Beth, author of Fake Plastic Fish.

Beth’s blog, Fake Plastic Fish, contains an immense amount of information regarding how you can reduce the amount of plastic you use. Beth’s passion for the cause is obvious when she speaks about her convictions in the above video.

Recently, Beth directed me to the Plastic Manners blog. Its author, Taina, had written a post that ties together plastic and endometriosis. (By the way, like me, Taina and Beth both have endometriosis).

Taina’s post Momma Earth, Are We Well? mentioned the fact that her endometriosis symptoms have decreased since she has stopped using plastics!

Finally, I thought I’d leave you with this video. It features biologist Dr. Wallace J. Nichols and Taina of Plastic Manners.

Needless to say, I could write on and on about the health problems for humans associated with plastics (not to mention what plastics do to marine life) but this post is already pretty lengthy. I’ll have to save some of that for another post. (I’ve written a bit about plastics, BPA, and phthalates in the past).

So, what is the takeaway out of all of this? For me, it is that each one of us has the power to make choices. Like Taina said in the last video, even if you refuse one plastic item a day, it helps.

Sadly, there isn’t a single one of us who can wave a wand and undo the damage of the oil disaster in the Gulf. However, every single one of us has some control over how much plastic we use.

Plastic is connected to health problems and it’s made from oil.

It’s all connected. We can each do our part.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Woo hoo! We traveled and it actually went smoothly! (Note to self: has something frozen over?) Traveling and chronic pain/illness can be a real mismatch. So, it’s always great when it works out!

Behold venue number one, the Columbus Museum of Art:

Photo credit: My dear husband. (Photo taken with permission at the Chihuly exhibition at the Columbus Museum of Art, Columbus, Ohio)

I find music and art to be very healing. Longtime readers who have seen my previous posts about Dale Chihuly’s work (or anyone who has ever looked at the Music, Art, Fun & Inspiration section of my blog) know how much I love Dale Chihuly’s artwork.

Photo credit courtesy of moi (Chihuly exhibition at the Columbus Museum of Art).

In years past, we had seen Chihuly exhibitions in New York (short drive) and Florida (when we were there on a trip) prior to checking out Chihuly in Columbus. When I heard a Chihuly exhibition was going to be two states away, my immediate reaction was, “Let’s go!” Then, the part of my brain that is practical and logical kicked in. This would be the greatest amount of car travel I had done in many years! I had to give some serious thought as to whether this was a wise idea.

Photo credit: My dear husband. (Photo from the Chihuly exhibition at the Columbus Museum of Art).

Due to my multiple chemical sensitivity (MCS), an overnight stay in a hotel is out of the question. (By the way, I apologize to my readers for writing just two out of three posts last summer – about traveling with chronic illness – and never getting around to writing the third one; it will cover our ill-fated attempt to stay at a Bed & Breakfast. Let’s just say that it was not an MCS-friendly experience!) So, I will have to get part three posted but the first two parts were Chronic Travel and Chronic Travel Encore.

In any event, traveling when one doesn’t have a safe place to stay overnight presents some interesting challenges. While it wasn’t easy, we decided to do our Columbus trip all in one day. That meant 14 hours of driving plus viewing artwork at three different locations in Columbus. This was an ambitious trip! Desperate times call for desperate measures. My husband and I discussed the logistics many times and decided to go for it. It worked out well and I’m so glad we did! (Thank goodness the vast majority of it involved air conditioning as it reached 91 degrees Fahrenheit that day).

Destination? Columbus!

Let’s just say I didn’t linger in the greenhouses at Franklin Conservatory (see more about Franklin below)!

Photo credit: dear husband. Venue: Franklin Park Conservatory.

I did finally find some latex-free compression hose before the trip (prescribed by my cardiologist to help the blood return from my feet to my heart and decrease the odds of me fainting). For more information about my experiences with heat intolerance and fainting, please see my dysautonomia series. I also did a bladder instillation for my interstitial cystitis (IC) before we left for Ohio. We wanted to keep the rest stops to a minimum for sake of time. The fact that my endometriosis cooperated was absolutely stunning. I can’t recall a trip since I was thirteen years old where this was the case. Everything just fell into place for this trip.

Fortunately for me, my husband willingly did the vast majority of the driving. I could never have done a road trip like this (especially on this timeline) without my husband taking the brunt of the driving. I did some driving while he slept but he did most of it. We had to get up at 4:00 am to get out of the house in time to make this trip a reality. (Anyone who knows that my insomnia makes 4:00 am more likely to be the time I am starting to sleep than waking up for the day knows that we REALLY wanted to make this trip happen)!

Behold venue number two… Franklin Park Conservatory:

I wouldn’t mind a skylight like this in my house. How about you?

Photos above courtesy of dear husband and me.

Note to MCS readers: Franklin Conservatory is not pesticide-free. After a lengthy phone conservation before the trip with a gentleman who works there, it became evident that they use beneficial insects in the greenhouses and make an effort to keep pesticide use to a minimum. While I was not thrilled with being near any pesticide (minimal or not) and while this venue certainly might not have been an option for some people, I decided to go to Franklin Conservatory. I did not have any MCS symptoms and we kept our time there brief.

While photos were (amazingly) allowed at all three venues we went to, the photos from Hawk Gallery are allowed for personal use only. So, I can’t post them online. The staff at Hawk Gallery could not possibly have been nicer. They really made our third stop of the day special. I knew from calling ahead that their Chihuly exhibition was already down but they directed me to their website and I discovered Lino Tagliapietra. So, we made sure to keep venue three on the schedule. Dale Chihuly and Lino Tagliapietra have collaborated in the past. A DVD was playing there and Dale Chihuly was speaking about Lino Tagliapietra. I didn’t catch the exact quote but essentially Dale Chihuly was describing Lino Tagliapietra as the greatest glass artist in the world.

I urge you to check out the Hawk Gallery website, where you can see beautiful photos of Lino Tagliapietra’s amazing glass art.

Behold photos of Lino Tagliapietra’s work at venue number three below:

Lino Tagliapietra

Last but not least, I thought this video was interesting:

Time lapse video of the installation of the Dale Chihuly exhibition at L.A. Louver Gallery from November 19, 2004 – January 15, 2005.

So, what’s the takeaway? I believe that most patients have a good idea of their strengths and limitations. Most patients know when it’s best to be cautious and when it’s best to “go for it”. That doesn’t mean that travel always goes well… even with the best of planning. (For me, it actually rarely does). However, I believe that there are times that it’s worth throwing caution to the wind and testing the limits. Obviously, one person’s limits may vary greatly from another person’s. However, I think it’s important to “go for it” when possible. In this case, it paid off for us in a big way. It had been a long time since I had traveled that much. It felt good.

“Travel and change of place impart new vigor to the mind”.
~~ Seneca

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Everything seems to be frozen now. No, I’m most definitely not talking temperature. Quite the contrary. My heat intolerance has been very challenging lately. (Cue the dysautonomia series re-post). No, I mean I’m frozen as far as writing blog posts right now.

No, I do not have a writer’s block. Quite the contrary. I have ideas about what to write fairly bursting out of my head. However, illness and time constraints have kept me from writing about even a fraction of what I’d like to be writing about. So, bear with me. I’ll try to catch up as soon as I am able.

Those of you connected with me on Facebook heard bits and pieces about why I narrowly averted a trip to the emergency room on Saturday (long story requiring a future post). I’m grateful to be doing better than I was Saturday but I’m still having considerable pain. So, bear with me. I’m sure with this hot weather I won’t stay frozen for long! Stay tuned!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

On June 1, 2008 I set off on an adventure. I had no idea where it would lead. That was exactly two years ago today. It has been a labor of love to be sure and I am extremely grateful for the opportunities and joy it has brought. It has been a wonderful journey and learning experience. I have met some of the kindest, funniest, sweetest, most compassionate people from around the world the past two years!

On that day, I began writing a blog called Jeanne’s Endo Blog. It was never really a blog about just endometriosis at all.

However, when I started writing a blog I knew endometriosis would be one of the illnesses on which I would focus my writing. After all, my journey with chronic conditions began 28 years ago with endometriosis. I was then just thirteen years old when my symptoms started in 1982. Ten years after that, I had a laparoscopic surgery that finally gave me a name for the illness that had turned my life upside down at age 13: endometriosis. It has been said that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. So, the time lag for my diagnosis was a textbook case. This type of delay is absolutely unacceptable. (There are many previous posts about why such a delay occurs – in the 373 posts that preceded this. I encourage readers to check my blog’s archives and/or search box in the right sidebar to locate such posts).

Regular readers here know that I have by no means confined my writing to endometriosis. At the same time, my passion for the endometriosis cause has made it a focal point amongst the posts about other illnesses and causes.

My husband commented a few days ago that my keyboard (new as of about a year ago) has been used so much that many of the letters no longer have their markings. That’s right. I have worn the letters off my keyboard. It has been a busy two years!

As the years have gone on since I became chronically ill in 1982, quite an array of additional illnesses have been added to my list of diagnoses. This link mentions a few of them. I have so much that I wish to say about each of my chronic conditions that I often have an internal struggle regarding how to spend my time and focus my energy.

So many of these conditions need more awareness! So many are poorly understood and under-researched/under-funded. So many involve patients whose experiences are not validated by our society or even their own loved ones (especially true for the “invisible illnesses”). Many patients are accused of exaggerating or of having “psychosomatic” illnesses. I struggle with how to give fair time to each of these illnesses. Which way should I turn? Which illness is facing the most pressing issues? Which illness is having an awareness day/week/month? How can I best help the causes that are dear to me? What is the most efficient use of my time?

Where should I go next when there is so much to do?

The reality is that I can’t do justice to all of the topics that I wish I could write about as frequently as I would like to write about them. I try to but the risk of burnout or escalating symptoms forces me to prioritize as best I can and try to pace myself. Sometimes I am better at this than others. Sometimes I don’t practice what I preach about the importance of self-care. To attempt to do justice to every issue I’m passionate about with my writing tends to throw the self-care I preach out the window. The reality is that I need to practice what I preach and take care of myself so I don’t get sicker and/or burned out from pushing myself too hard. This is probably the most challenging part of blogging for me. If I wrote 24/7, I could never do justice to each illness the way I’d like to in a perfect world. There are just 24 hours in a day. I have some serious health problems that place limitations on me. I may not like it but it’s the reality. Even if I were healthy, what I wish I could write about is beyond what one person can do. I have been trying my best to make peace with this fact.

In addition to writing about illnesses I have, I also advocate for causes I believe in (such as illnesses that do not affect me firsthand but do impact large numbers of my friends – online and off). Also, I spend an enormous about of time in “off the blog” conversations with fellow patients: giving/receiving support, sharing resources and information, working as a team to research issues we care about, etc.

When I converted my blog from Jeanne’s Endo Blog to Chronic Healing, I wanted a blog name that captured my desire to keep writing about many chronic conditions. I wanted the name to expand beyond endometriosis alone. Finally, I wanted it to be positive and reflect healing.

In the course of a conversation with Cassie Germsheid (who re-designed my blog and migrated my data from Blogger to WordPress) about what to name this blog, I decided on the name Chronic Healing. With Cassie’s outstanding help and a great deal of hard work, I was able to realize my goal of launching Chronic Healing on June 1, 2009… the one year anniversary of when I began blogging initially. There was an enormous amount of data migrated. Cassie helped me make Chronic Healing what it is today.

Now, here we are a year later. I cannot express how much I have learned, how touched I have been by the kindness and compassion of so many people that I have had the privilege to “meet” online, how many intense/strong connections I have made with fellow patients around the world, how much support and information I have received, etc. My only hope is that I have been able to touch the lives of those I have met on this awesome journey even a fraction of how much they have touched me. It has been an honor and a joy to interact with so many people who practice compassion and loving kindness each day.

The LOVE expressed to me by my online friends warms my heart and amazes me every day. It truly is amazing and heartwarming. The acts of compassion I have witnessed these last two years are beyond anything I could have imagined.

It would be impossible for me to thank everyone publicly but please accept this post as my blanket thank you to everyone. If you are reading this, the thank you applies to you!

Moving on, there is exciting news ahead that is related to a venture that my friend Amanda recently embarked on. Like me, Amanda has endometriosis. She has a new site that is up and running now and you can check it out by clicking below. I encourage you to do so!

Amanda’s Patch

So what is the exciting news? Well, I had contemplated last week whether to do something to celebrate this two year anniversary but had not decided upon anything. It was just a fleeting thought and I hadn’t decided whether I would or would not have some sort of blog giveaway. The very next day, my dear friend Amanda contacted me volunteering to donate something very special for a blog giveaway.

She had absolutely no idea of my blog’s anniversary date and was simply offering to donate a handmade item because, frankly, it is in her nature to do thoughtful, caring, supportive things like that.

I was very pleased with the timing of Amanda’s generous offer to donate an item for a blog giveaway. For it to be a handmade, beautiful giveaway item from someone I respect so much and for it to unfold at the perfect time for an anniversary giveaway is just wonderful.

It gets even better… The handmade item she is donating for a blog giveaway for this very post fits perfectly with the healing theme of this blog! You see, Amanda uses healing crystals in her handmade jewelry. What a perfect way to honor healing… the very theme of this blog.

Before I share a description of the item or the photograph of the prize that someone reading this will win, I would like to urge readers to check out Amanda’s new online shop. She recently launched her own business and I am beyond thrilled for her! Click below to check out her site:

Please note that the above link will take you to two places (her online shop and her blog). On the Amanda’s Patch blog, she has a section that talks about endometriosis. As Amanda puts it on her blog’s endometriosis section, here is why she included some information about endometriosis on the blog:

“You see, my endometriosis was a massive part of the decision to start Amanda’s Patch and so it had to be involved somewhere”.

I love the way Amanda increases endometriosis awareness through her new business and lets those visiting her shop’s blog know why the endometriosis cause is important to her! She is integrating her personal experience into her new venture in such a wonderful way that can educate people about endometriosis. (Among Amanda’s past blogs is “Me and You at 22″, which many regular readers here will recognize).

Well, I have reminisced enough. I do believe it’s time to get on to the details about the blog giveaway!

Here is a photograph of the beautiful necklace handmade by Amanda:

Prize description of necklace:

Amanda says, “the necklace is made from amethyst and aventurine beads crocheted onto silver-plated copper wire and has a lily-shaped toggle clasp. Amethyst and aventurine are both part of the quartz family, which means they complement each other beautifully and will go with pretty much any other crystals the winner may wear”. Amanda adds that as far as energy is concerned, “all crystals have energy properties”. She also notes that, “all types of quartz have different properties but the family are, quite simply, great for healing negative energies!”

Amanda notes: “amethyst works with the ‘higher’ chakras, particularly the third eye and crown chakras which will help on a physical level for the head and sinus areas as well as spiritually by helping to clear the thoughts and emotionally by helping to clear the blocked emotions” and that “aventurine works on the heart chakra, helping to ease heartache, particularly caused by factors out of our control. Green is a particularly healing color (colors are so important). It helps ground us, find the best in our environments (think of connections with nature) and is great for emotional pain”.

Finally, here is some random trivia about crystals. Amanda tells me that work is being done on using crystals as massive data storage devices. I did a search online and I found a link about this topic here:

Tiny Crystals Could Hold Key To Massive Computer Memory

Interesting, huh?

As with past blog giveaways, the winner will be chosen randomly based on comment number and you may leave as many comments as you wish. (Obviously, multiple comments increase your odds of winning this beautiful crystal necklace). Amanda has generously offered to ship the prize to the winner regardless of their location. So, this contest has no geographical requirements. If you’re interested in a chance to win this lovely necklace, be sure to leave a comment! I’ll pick a winner in a few days. I haven’t decided when I’ll be picking the winner. So, get your comments in now to enter.

Thank you!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

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Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

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As Multiple Chemical Sensitivity Awareness Month draws to a close, I wanted to share something special that Judie Squires made awhile back. It is a short film that is just plain awesome.

It is sheer genius.

Susie Collins, Editor of The Canary Report

First, allow me to share a little background. For almost two years now, I have had the honor of knowing Susie Collins. Susie is an absolutely amazing woman. She inspires others, is a wealth of information, is compassionate and wise, and has created a thriving online community for multiple chemical sensitivity (MCS) patients. Susie exemplifies loving kindness. She is a brilliant source of information on multiple chemical sensitivity (MCS).

What she has achieved HERE is nothing short of amazing. Her site just celebrated its second anniversary and what she has accomplished in that time is outstanding. Her website has a blog jam-packed with information and a very active, supportive, informative Canary Report NING social network (see below).

Visit The Canary Report

She has established a safe place for “canaries” from around the world to gain and give information and support. Shortly after I began writing my blog in June 2008, Susie found it when I had written a post about MCS. I am so grateful that Susie found my blog. Her site is the first place I turn when I’m looking for multiple chemical sensitivity (MCS) info.

Moving on to the sheer genius of Judie Squires, who writes The Colorful Canary. In February, she made a film in honor of Susie Collins.

Below is the short film. It may take a little bit of time to load, depending on your computer. I promise that it’s worth the wait. Even if you don’t know Susie, I think you’ll find this film entertaining. If you do know Susie (and all of her good works), you may find yourself laughing out loud, dabbing misty eyes, or both while watching this short film. This is a perfect tribute to Susie… a woman dedicated to justice, disseminating factual information, helping people, and improving the lives of MCS patients. Please remember that while MCS Awareness Month may be drawing to a close, MCS awareness is needed year-round. Enjoy the short Thank You Film!

A huge thank you to Judie Squires for creating this short film. The warm reception this got in February reflects the love that so many people have for Susie Collins and her incredible hard work on behalf of “canaries”. Judie’s short film perfectly captured the admiration that so many people have for Susie’s work. Thank you, Judie!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

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Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

This past weekend, my husband and I went out to dinner for our twelfth wedding anniversary. Sounds fun, right?

It did NOT go the way we planned. Today, I decided to make a video for Multiple Chemical Sensitivity (MCS) Awareness Month. Before posting this video, I want to emphasize that secondhand smoke is unhealthy for all. This video happens to focus on a reaction that I have been having and continue to have after last weekend’s secondhand smoke exposure. However, secondhand smoke is NOT just a health problem for the chemically sensitive.

Yesterday, I was in bed until about 6:30 pm. I was simply too weak and sore to get out of bed. I finally got up to eat dinner. Today is better than yesterday but I continue to have multiple symptoms. My voice is definitely stronger but I am in pain (head pain, throat pain, sinus pain, aches, etc.)

I failed to mention in the video clip below that the cigarettes that were smoked throughout our meal were joined by CIGARS by the time we high-tailed it out of there. No, I am not making this up. The wedding party was apparently all smoking cigars (according to the manager I encountered in the hallway by the gift shop… during the long, long wait for by check – by which time I had bailed out of the dining room). The cigars had apparently just started up. At this point, I re-entered the dining room to let my husband know I’d be outside and which door he needed to use to bypass the cigars.

Thus, we used an alternate exit and walked the long way around to get to our own car. Classic.

Transcript of video for anyone who had trouble hearing what I said:

Hi. This is Jeanne from Chronic Healing. My address is Chronic Healing and 4 days ago my husband and I went out to dinner for our anniversary. The reason that my voice is the way that it is now is from exposure to secondhand smoke and I’m wearing yellow because it’s MCS Awareness Month (MCS standing for multiple chemical sensitivity). I know that it’s hard to hear what I’m saying. So, I will put a full transcript on my blog. Again, that’s Chronic Healing at Chronic Healing but I wanted to make a video so that people could SEE and HEAR one of the ways that chemical sensitivity can affect someone like myself who has MCS. Secondhand smoke is not good for anybody but for somebody like myself who is extremely sensitive, it can cause all sorts of symptoms. In my case, a couple of days ago I couldn’t have made a video because you wouldn’t hear any sound at all. My voice has gone from no voice to weak to sounding like a bullfrog and it’ll probably be this way for a couple of weeks because I’ve had this happen enough times now to know. My sinuses have been really messed up; my head has been feeling like it’s going to explode; my throat was really, really sore for the first couple of days and it’s calming down a little bit now but it was extremely sore for the first couple of days. I live in a state which has had smoke-free restaurants for years. When I say “smoke-free” restaurants for years, that means INDOORS. That does not include OUTDOORS. There are now some states where you can’t smoke OUTDOORS (on patios and porches and things either). It just so happens that the restaurant that we went to for our anniversary was a restaurant in an inn where we had stayed overnight on our wedding night. We thought it would be nice to go out to dinner at this particular restaurant. That was my bright idea. BIG MISTAKE. We won’t be going back there. So, because there was a wedding party going on and everybody in the wedding party was smoking out on the porch (a few feet away outside the door of the dining room we were in), the smoke was blowing indoors. It was just as if they were sitting next to us smoking. It was just a very intense exposure and to top it off we had a server who was very slow with serving our table so that the exposure was prolonged with that. So, I just wanted to make a video so that people could get some kind of a visual and an audio example of one of many ways that secondhand smoke can cause an obvious, immediate effect. Obviously there are long term effects, like cancer, associated with secondhand smoke but I wanted to show how it can effect somebody like me in a more immediate sense. So, I hope you’ll check out my blog Chronic Healing at Chronic Healing and have a good day. Thank you.

By the way, I am not wearing my glasses in the above video because they were hurting my face. (My husband handed me my glasses when we were ready to film, saying “no one will recognize you without them”. My reply was, “I don’t care. My sinuses hurt. I’ll just explain to people why I skipped my glasses”… So, that’s the scoop with the missing glasses).

Link cited in the video:

American Lung Association link

Stats cited in the video (from above link):

“The U.S. Surgeon General concluded back in 2006 that nearly 50,000 Americans die each year from secondhand smoke exposure. The findings of this new Institute of Medicine (IOM) report are significant, because they confirm that secondhand smoke exposure is a significant cause of acute coronary events, including heart attacks, and that there is no safe level of exposure”.

I was supposed to have a medical appointment tomorrow. I had to reschedule it since I am in no shape to drive almost an hour each way to it. Dizziness and fatigue are not good ingredients for me when planning a drive to a medical appointment (all of my doctors are 45-60 minutes away… each way). I have learned there are times my body just can’t handle this. Considering that I couldn’t force myself out of bed until 6:30 pm yesterday, I concluded today that I’d better call and cancel tomorrow’s appointment.

Bear in mind, the secondhand smoke exposure was last Saturday and I had to cancel an appointment for tomorrow (Thursday). I have not yet determined what to do about another appointment I have scheduled for Friday. So, nearly a week after the exposure, I’m postponing or contemplating postponing my own medical appointments thanks to a secondhand smoke exposure on May 22nd.

Again, I wish to emphasize that secondhand smoke is not healthy for anyone.

Back to the topic of multiple chemical sensitivity (MCS). As with so many other illnesses, MCS comes in a wide variety of severities and symptoms can vary from person to person. To learn more about MCS, please check out my own personal favorite resource for MCS information:

The Canary Report

It is chock full of information on the topic of MCS. I highly recommend checking it out!

Finally, if you missed my recent post below, please check it out:

Riverdance Ruined?

It has gotten a fair amount of traffic and I thought it was worth mentioning again for those who may have missed it.

Thank you.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

Wow! It has been nine days since my last post. It is extremely unusual for me to have so much space between posts. However, my body has made it clear that I have reached the “rest is just not optional” zone. I have learned to heed the warnings from my body when things reach this zone.

Beginning HERE in March, I have been really busy working on various awareness days, weeks, and months. By “really busy”, I mean striving to avoid burnout. Too busy.

Some of the advocacy work I have been doing was posted here and other information was posted on other sites such as Facebook.

Also, I set up a new group in March called Endometriosis and MCS for patients who have both chemical sensitivity and endometriosis on The Canary Report’s NING network. Unfortunately, I have been so busy with all of the awareness activities that I haven’t really spent very much time, as of yet, on that group. However, the good news is that I have identified many women who have both chemical sensitivity and endometriosis and several of them have joined the group. So, I think we’ll get it active once things have calmed down and I have a chance to focus some energy on it. I believe it’s important to look at connections between conditions that have overlapping populations and look forward to talking with the group members who’ve already joined and those who will do so.

In addition to the awareness issues I’ve been working on, I picked up several Facebook friends who have interstitial cystitis (IC) during the course of Endometriosis Awareness Month. As many readers here are already aware, endometriosis and interstitial cystitis are considered to be co-existing (sometimes called “overlapping) conditions. Here is a shout-out to Melissa Bachoo. She is an IC patient I have had the privilege of getting to know via Facebook over the last few months and she is a very thoughtful, caring person. If you have IC and you are a Facebook user, I recommend getting connected with Melissa Bachoo.

I have had a great deal of off-blog communications 1:1 with people. While I am very happy to have gotten to know some new people and have also interacted with people I’ve known awhile, it does take time to try to keep up communications with people. If you are one of many people that sent me a message via Facebook or The Canary Report’s NING Network in March, April or May who I have yet to respond to, please consider this my blanket apology for recently finding it quite impossible to keep up with replies. I am not ignoring you and I’m really sorry for the delay. I have never felt so behind in replying to people’s messages. Please don’t take it personally. I have just been trying to tackle way too much in the last couple of months.

Regarding endometriosis and IC as overlapping conditions, please see related press release here from the Overlapping Conditions Alliance:

The Overlapping Conditions Alliance Launches the ‘Campaign to End Chronic Pain in Women’ on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare

I am far too exhausted and drained right now to compile a comprehensive list of awareness posts from the last couple of months (which you can easily find in the archives or by searching via topic words). However, I did select a few recent posts that were either written specifically for awareness days/weeks/months or that were written during that same time period that I thought might be of interest. This is just a sampling. Again, there are more related posts available and I encourage you to check them out by using archives or search (both located in the right sidebar).

Here are some topics covered during the last couple of months in conjunction with awareness days, weeks, and/or months (in no particular order):

endometriosis

fibromyalgia

ME/CFS

multiple chemical sensitivity (MCS)

infertility

endometriosis

infertility

endometriosis and MCS

Last but not least, I wanted to give a shout-out to a blogger I met relatively recently. Her name is Jenn and her relatively new blog has already covered an array of endometriosis-related topics. If you haven’t yet checked out her blog Endo Friendo, I encourage you to do so.

In the short time Jenn has been writing a blog, she has talked about alternative nausea treatment, preparing for surgery with methods like guided imagery and Jin Shin Jyutsu, infertility awareness week, our endometriosis awareness petition, and much more. Jenn is passionate about the endo cause and has a great sense of humor. She is a shining example of how not to let endometriosis get you down. Please drop by her blog and say hello. Her open-minded, caring manner makes her a pleasure to know. I feel like I’ve known her longer than I have thanks to our off-blog communication.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

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Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

In my last post, I mentioned wanting to write a post with an example of how fragrance can really impact people in the vicinity of the individual wearing fragrance. Here is just one story of how fragrance took a special, long-anticipated event and turned it into a stressful, tension-laced situation.

For weeks and weeks, we had looked forward to seeing the Riverdance Farewell Tour. Tickets for such an event are not exactly inexpensive and this was an uncharacteristic splurge that we took after seeing a Riverdance show in 2000 that was spectacular! For those who may not be familiar with it, here is a sample of their magic:

As you can imagine, I did not want to miss a moment of the show. Everything was going along swimmingly at first. We had seats on the left aisle. (Due to nerve damage to my leg related to my last surgery where two nerves were cut, anytime I go to a theater I need a left aisle seat). The bonus of having a left seat was that there was a wide aisle between my seat and the section left of me. Our seats were in the back of the balcony. So, there were no worries about fragrances behind me. I was safe on my right with fragrance-free loved ones there. The place was nearly packed (probably an official sell-out). However, the two seats directly in front of me were empty. I was happy as a clam. To sit in a theater like that and not have any fragrances nearby is a near-miracle.

The show was a matinee. It started at 2:00 pm. I had 28 minutes of pure bliss. Then it happened. In my peripheral vision, I noticed a flashlight. An usher was escorting two women to their seats. Can you guess where they were? If you guessed the two seats in front of me, you’re right. (Sorry but I don’t have a prize for those who guessed right). I swear to you on my life that both of these women must have spent the 28 minutes they were late coating themselves in fragrances. I am not even kidding.

So, here is the thing. I have lived with multiple chemical sensitivity (MCS) since 1992. That means I have been dealing with MCS four years longer than I have known my husband. So, I know what I can handle and what I can’t and it was very quickly evident that I could definitely not handle sitting behind these two human perfume factories!

My dear husband is wonderful and supportive about my many chronic illnesses. My dear husband is also the type of person who does NOT like to make a commotion in a crowded theater. To be clear, I don’t like to do so either! However, since my breathing trouble set in shortly after these women arrived and since that was quickly followed by profound dizziness, I knew I had to bail.

By the way, who shows up to a not-inexpensive show like that 28 minutes late, anyway? Seriously, I thought I was in the clear!

Anyway, my husband is not one to switch seats mid-performance. That’s just the way it is. So, when my dizziness morphed into starting to lose my vision partially (i.e. I was about to faint), I matter-of-factly informed him that I was going to find an usher because I had no choice but to move. I was saddened (but not surprised) that he stayed put.

I found an usher who was incredibly helpful and directed me to an area with some open seats. This was actually closer to the stage, had a slightly better view, and there were no fragrances nearby. In the time that it took to talk to the usher, I missed part of the show. I was very disappointed to miss any of the show but I did what I had to do.

Shortly after moving, it was intermission time. I made sure Hubby knew where the new seats were and encouraged him to move also. He stayed put. I wasn’t going to argue about it. I did what I had to do.

So, back to the post title. Was Riverdance ruined? No. Despite missing part of the show, the commotion of switching seats, the trauma of inhaling that unbelievably strong perfume, and the tension all this caused with Hubby… it’s pretty hard to literally RUIN a show as wonderful as Riverdance.

Do I wish the fragrance incident hadn’t happened? Of course. Do I wish theaters like that were fragrance-free? Absolutely!

However, I did the best I could to appreciate what I did see (the vast majority of it) and make peace with the fact that the time I missed was totally out of my control.

My dream is that someday fragrances (so many of which contain carcinogens, neurotoxins, and/or endocrine disruptors) will no longer be allowed in such public places. It is not healthy for anyone to inhale toxic fragrances. While my multiple chemical sensitivity (MCS) may make me more sensitive to it (than the average person) in an obvious, short-term way…

THESE SAME CHEMICALS CAN HAVE LONG-TERM EFFECTS ON EVERYONE AND ANYONE WHO WEARS THEM OR INHALES THEM BY BEING IN PROXIMITY TO THEM

There IS good news!

My wish is that there will continue to be breakthrough success stories like those below and that the tides will keep turning in the right direction (as they already are now). My primary care physician’s office instituted a fragrance-free policy for employees BEFORE the CDC ruling you’ll see listed below. So, awareness IS increasing!

US Centers for Disease Control and Prevention issues indoor air quality policy for all CDC offices nationwide. This post talks of a huge victory! The Centers for Disease Control issued a policy making their office space fragrance-free (and more). This sets a precedent for medical offices and hospitals to follow suit. This post is courtesy of Susie Collins at The Canary Report. Thank you to Harry B Clark for obtaining the documents.

Workplace Perfume Precedent: This CBS video is courtesy of Jasmine at Jasmine’s Cove.

April 30, 2010: New ADA Guidelines for Fragrance Sensitivity (Another victory! This one capitalizes on the Susan McBride case mentioned above). This link is courtesy of Harry B Clark.

Last but not least… You didn’t think I was going to leave you with a cliffhanger, did you? No. The second part of the Riverdance finale video is below. Enjoy!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<