The Canary Report

The myth of a “safe place”

Posted on Jun 16, 2010 by Susie Collins in Blog, Healthy Living, Kimberly Shaw, MCS

I have come to a personal conclusion through research, interviewing others with MCS, and my own personal experience, that there is no such thing as a totally “safe place.”

By contributor Kimberly Shaw.

In this modern age, a "safe" area of the world has basically become an illusion.

Having lived and/or visited eighteen states and seven countries since I was diagnosed with Multiple Chemical Sensitivity, I know quite a bit about searching for a safe place to live. I have come to a personal conclusion through research, interviewing others with MCS, and my own personal experience, that there is no such thing as a totally “safe place.”

Even when we have found a “safer” area to live, circumstances can change around us. These circumstances can be situations we have no control over like a wildfire, an oil spill, a new road being put in, a neighbor spraying pesticide or volcanic smog.

In this modern age, a “safe” area of the world has basically become an illusion. Not trying to burst anyone’s bubble, but it saddens me when I meet people who believe if they could just move to utopia they would finally heal. When they may find the tools for their healing process right where they currently live.

Several months after I was first diagnosed with MCS, I was able (through nothing short of a miracle) to move to a “safer” house. The house was just a city over from the previous home, but it had hardwood floors, no new construction or paint, a whole house water system and a detached garage. We had the ducts cleaned and bought some air purifiers and it became my healing place. It also became my “safe bubble” from which I was first unable and later afraid to leave.

About that time I read a quote from Helen Keller, “Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure.” While the quote does not apply to those with MCS in the sense that we can (and should) avoid many exposures and dangers, it did show me that my feeling of security was just that, a feeling. I would eventually need to risk and leave the house. That there are no guarantees of safety. All I can do is make the wisest decisions I can make, have the safest house possible and try to plan for the unexpected. In the meantime, I also need to live! Which means sometimes I’ll be at risk when I leave my home. Then again, just staying at home could become risky. One summer in my “safer” house wildfire smoke came into the area and I had to leave my home for several weeks.

Since that first “safer” house, I have moved many times and traveled more than I ever dreamed possible. I have come to realize that the safest place for me is one I create. While I have found there is no “safe place” in terms of an area of the world, there are certainly areas that are far “safer” than others. I feel we need to pick the safest area possible for our situation (taking into account jobs, family, friends, finances, medical care, transportation, etc.) Then we need to find the “safest” place in that area. At that point we can create a “safe” haven in that place.

We can largely control what goes into our house and our bodies. I have found much of my healing has come from being able to control those areas. Most of us with MCS spend a lot of time in our homes, so our homes need to become the safest place possible.

I have had the wonderful opportunity to meet many with MCS during my travels and interviews to make a documentary film about MCS. One thing that has become very clear is that we are all so very different. What works well for one person may or may not work well for another. However, those with “safer” homes regardless of where they live seem to do better than those living in homes that have chemical or mold issues. It seems to better to have a safer home in a more polluted area than live in a less polluted area in a home with issues.

For me, the question has become, “How can I make where I live the safest place possible?” Rather than, “Where is the safest place to live?”

Disclaimer: I am not suggesting anyone ever stay in a bad situation or area. Some places cannot be made better. If you are in a high risk place, leave as soon as possible. I am only suggesting that there is no “utopia.” Some places do seem to work better for most than others though.

Learn more about my documentary film on Multiple Chemical Sensitivity at Adventurous Canary Productions. Come visit me at my blogs Adventurous Canary and Serendipity.

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Tags: Environment, Healthy Living, Home, MCS, Multiple Chemical Sensitivity

Open tabs

Posted on Jun 07, 2010 by Susie Collins in Blog, News, Susie Collins

Here are some websites and stories I’ve been reading this week.

The National Children’s Study is a multi-year research study that will examine the effects of environmental influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21.

I highly recommend everyone become familiar with the National Children’s Study.

Excellent article on Air Filters: Choosing Portable Equipment.

The New York Times reports on Domestic Detox: Extreme Home Cleaning.

Adrien Bledstein’s I Can Breathe! Masks.

Annie Leonard, The Story of Stuff creator, talks about polyvinyl chloride (PVC).

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Tags: Children's Health, Healthy Living, Home, Products, Toxic

MCS and the search for a safe community

Posted on May 24, 2010 by Susie Collins in Blog, Healthy Living, Keith Carlson, MCS

Based on our research and experience thus far, our conclusion is that intentional communities are not a safe bet for those with MCS and environmental illnesses, and the learning curve remains steep even for those who claim to be living a sustainable and healthy lifestyle.

By contributor Keith Carlson, RN, and Mary Rives.

Keith

In honor of MCS Awareness Month, my wife, Mary Rives, and I are posting this co-written article in order to share more deeply regarding one of the most significant reasons that we undertook our current journey around the country.

Because we both live with Multiple Chemical Sensitivity (MCS), finding a safe place to call home is paramount to us, and those who have MCS understand what it’s like to live like a “canary in the coal mine” in a world saturated with substances that undermine our health and impair our ability to function effectively.

Mary

With recent reports showing that even ADHD may be linked to pesticide use, there is a crucial necessity for us to be more public about our MCS, our search for safe housing, and the need for greater awareness about the effects of chemicals, pesticides, and manufactured fragrances on the health of humans and the environment. That said, many hospitals and other health care facilities are now becoming fragrance-free in an effort to support the health of patients, thus awareness is indeed growing about this important public (and personal) health issue.

We offer this article as a missive of support and hope to other canaries, as well as a plea to those without MCS—especially intentional communities—to more deeply understand our plight.

~Keith Carlson and Mary Rives

~~~

When it comes to finding safe housing, everyone with Multiple Chemical Sensitivity (MCS) will agree that this is one of the most daunting challenges of living with this most highly inconvenient and disheartening medical condition.

After living in New England for 20 years and becoming chemically injured in the process (most likely due to hidden mold in our home), it was no longer safe for us to live in our beloved neighborhood or continue to work in our meaningful jobs.

Our lovely arboreal homeowners’ association provided what at first appeared to be a healthy sanctuary for our family of three, but our blissful existence was often impeded by the imposition of a variety of common household toxins, including the fumes of lighter fluid, charcoal, dryer sheets, and lawnmower and vehicle exhaust. Lying in hammocks or eating home-cooked meals on our custom-made screened-in porch, we were often driven indoors by clouds of the aforementioned toxins filtering through the forest and onto our property.

When exposed to various chemicals and environmental toxins, we each experience a similar yet somewhat different constellation of symptoms, including headache, confusion, sore throat, irritability, asthma, hives, joint pain, muscle pain, and burning eyes. When mold was discovered in our attic after our house was put on the market, the potential culprit of our mutual MCS only added to our intense desire and need for a safe refuge.

In our workplaces which had fragrance-free policies, we were both exposed to environmental insults that exacerbated our condition and underscored the need to radically change our lives. Policies are virtually ineffective without enforcement, often driving wedges between people of varying cultures and levels of acceptance, support and awareness. The commitment to educating others can be exhausting, and workplace exposures impair job performance and strain professional relationships. Thus, we canaries often find ourselves frequently leaving otherwise satisfying and meaningful jobs in order to preserve our health and sanity.

Having lived in an intentional community early in our relationship, we decided that ecologically-minded intentional communities with a focus and commitment to sustainability would offer the greatest potential for finding a safe home. We hoped that this form of community would use earth-friendly, biodegradable and non-toxic products in keeping with that vision of sustainable living, and provide for us a safe place to live our lives in peace and health.

Hitting the proverbial road in a 29-foot mobile home, we began to scour the country for an intentional community or eco-village that offered an opportunity for healthy living. Traversing the East Coast, Deep South, Gulf Coast and Southwestern United States, we visited over two-dozen intentional communities in more than twenty states over the course of seven months.

Many of these communities profess to live close to the earth by using sustainable building and permaculture techniques, renewable energy sources, organic gardening, and other well-meaning practices. In our naivete, we did indeed assume that “sustainable living” would include the use of earth-friendly and non-toxic products, but we’ve sadly found that many such communities simply reach for the cheapest common denominator, with Tide, Bounce, Palmolive, Cascade and other products being the easy mainstream fix.

Our disappointment and disillusionment were great when many visits to such communities revealed that people were often unwilling to “walk the talk” when it came to using safe and healthy products. As to the issue of being fragrance-free and MCS-friendly, most communities appeared oblivious at best, much to our dismay.

Earthaven Ecovillage in Asheville, North Carolina, Sunflower River Community in Albuquerque, New Mexico and The Commons on the Alameda Cohousing Community in Santa Fe, New Mexico are the three communities that we have found in our travels to best embody earth-friendliness and consideration for those living with MCS.

While people at Earthaven do indeed burn a great deal of wood for winter heat and state that they are not well-equipped to have people with severe MCS join them, many of the residents appear to embrace true sustainability. Sunflower River has no openings for new members at this time but they are a growing community that truly walks their talk. Twins Oaks and Acorn communities in Southern Virginia are runners up, but they use lavender scented natural detergent which neither of us can tolerate without becoming symptomatic.

Although the numbers are few (and we have only visited a fraction of the intentional communities in the United States), we are grateful to have found a few that seem to understand how important it is to use biodegradable products that are healthy and earth-friendly. And of these few, the Commons on the Alameda is the only one who uses all fragrance-free products!

We are planning to live at The Commons this summer in order to test the waters and see how their experiment in MCS-friendly community is going. The Commons is an established cohousing community with 28 homes and a common house located in Santa Fe, New Mexico.

The Commons on the Alameda Cohousing Community in Santa Fe is an extremely MCS-friendly community that has adopted a strict fragrance-free policy in an effort to create a safe haven for residents with environmental illness. Championed by an medical doctor specializing in environmental medicine who lives at the community, the shared spaces at The Commons are for all intents and purposes fragrance-free, and guests and residents are urged to comply with the policies. We are actually planning to live at The Commons this summer in order to test the waters and see how their experiment in MCS-friendly community is going, bringing with us great hopes that we will find it to be a safe haven where we can, at long last, feel comfortable and at peace.

For canaries considering looking into intentional community as a possible source of safe housing, we would like to warn those with MCS that even eco-villages and communities that espouse sustainable living as a way of life so often overlook the very products that people put on their bodies, into the water, and onto the ground. As many of us already know, mainstream products are often cheap, readily accessible, and have brand recognition that even the most alternative individuals cannot resist. The tendency (can we even say addiction?) to purchase such products is rampant, and even those who live in intentional communities often choose to drive to Wal-Mart and buy whatever cleaning products are on sale. We understand that communitarians also have to make ends meet, but when one’s habits as a consumer fly in the face of one’s proclaimed ecological lifestyle, questions are raised as to whether that community or individual is truly thinking clearly about their choices as a consumer and their commitment to the earth (and their health).

Based on our research and experience thus far, our conclusion is that intentional communities are not a safe bet for those with MCS and environmental illnesses, and the learning curve remains steep even for those who claim to be living a sustainable and healthy lifestyle.

Meanwhile, many of our fellow canaries live with severe MCS which prevents them from exploratory adventures like the one we’ve undertaken. They are unable to risk the dangers–and expenses–of the unknown, despite the fact that they have so much to contribute. Living with MCS sadly often necessitates social isolation in order to minimize symptoms which only worsen with subsequent exposures to the most basic of chemicals. Adding to the isolation are the common financial hardships caused by the medical need to let go of jobs in toxic work places. Employees with MCS are also frequently discriminated against by employers who are unwilling to make reasonable accommodations, despite the fact that MCS is recognized as a disability by the Americans with Disabilities Act.

Having MCS inconveniently interrupted our careers and engendered enormous out-of-pocket medical expenses in order to prevent our illness from worsening. Even with good health insurance, access to treatment has been very expensive and limited, and the fact that the AMA refuses to recognize MCS as a physiological illness makes finding sympathetic medical providers an additional challenge. Avoidance is the best medicine, thus our radical lifestyle change and quest for safe community living.

Our hope for the future is that more and more intentional communities will realize the importance of the need for safe housing, including across-the-board use of fragrance-free, environmentally friendly products. May they become safe havens for canaries of the coal-mine while taking their commitment to the earth and her inhabitants even further. Meanwhile, perhaps a few MCS communities will even be born from our collective desire for a safe place to rest our weary heads!

We remain hopeful that we will find a place to call home for the long-term where we can live safely and in better health. We also remain realistic that uphill battles and further education will be needed for those with whom we share living and breathing space, perhaps for the rest of our lives. For now, the two of us will continue to explore whether intentional community will fit thebill when it comes to healthy living as we land in our temporary nest with great hopes for a healthy future for all.

~~~

This post was originally published on my blog Digital Doorway, a digital venue for creative expression, nursing adventures, reflections, thoughtful reverie, thoughtless repose, and other flotsam and jetsam. You can also visit me at Mary and Keith’s Excellent Adventure, where my wife and I blog about living full-time in our new RV, traveling the highways and byways of America, visiting intentional communities, and bringing Laughter Yoga and the benefits of health and wellness coaching to new and old friends along the way! ~Keith

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Tags: Environmental Health, Environmental Illness, Healthy Living, Home, MCS, Multiple Chemical Sensitivity

This is progress!

Posted on May 12, 2010 by Susie Collins in Blog, Guest Bloggers, Healthy Living, MCS

I am about to talk about the most hotly debated and taboo topic in the MCS crowd– and that is about healing and possibly being cured. Since I am always on a steady upswing and will never give up, I thought I would just jot down the things I felt were helpful to me– no matter how controversial they may be.

By guestblogger Leslie Richard.

I am trying to learn to drive a car again after five years of being house bound!

People who have never experienced a chemical injury or some kind of health breakdown that causes a person to get Multiple Chemical Sensitivities may find this post a little weird… So be forewarned, let your judgments and confusion take a nap while ya keep on reading.

For those of you who have MCS, ya might have to let your judgments go, too, cause I am about to talk about the most hotly debated and taboo topic in the MCS crowd– and that is about healing & possibly being cured. Yeah, I said the “C” word, and now I am gonna tell you what I really think…

Some of us who developed MCS know exactly what happened, you might have been exposed to chemical in your workplace and then watched your health take a spiral into a housebound hell, you may have been renovating your home and didn’t recover, you may have been a Gulf War veteran who was lied to until recently about pills you were administered, or a 911 victim… or maybe an average person like me who was exposed to various things over time and happen to have an auto immune disease that caused enough damage to make the normal body functions take a dive six feet under.

However you got to the stage of MCS, no matter how hard you had to fight to be understood and never truly were by everyone… there is also this point of acceptance and letting go– letting the label of being “sensitive” be as big a deal as having brown hair.

Over the years, my symptoms of MCS kinda took up and down dives, with being only generally sick when going into K-mart (who isn’t sick in that place?), or when exposed directly to fresh paint, or loud amounts of perfume. These things bordered on normal, and didn’t stop me from at least hanging out at thrift stores. But nearly five years ago I got pregnant, and very sick– when I lost the baby my mild MCS turned into raging impossible to deal with every smell makes me wanna pass out and kill people so I must hide in the woods MCS. It was so intolerable that I could no longer drive without having seizures, I could not stand for my X-boyfriend to come home from the store and get near me with his smelly clothes, I could not hang out with or visit any other humans, or go anywhere in public. After nearly a year of this kind of hell-ish reclusive life, I ventured out…

I didn’t go sticking my head inside of paint cans or huff glue, but I decided if the world was going to kill me, then Fuck It! Let it kill me while I am living my life and doing what I want–

This is the healthier me AT A PARTY recently that included a lot of people, bonfire, some people smoking.

I started off slow and made small goals. Each time I reached a small goal (like buy a lottery ticket at a gas station two blocks away), I would set the bar higher and further ’til I was working on a more functional level. Four years later… look at the picture, that is me AT A PARTY that included a lot of people, bonfire, some people smoking, etc…

Two things I noticed over these years:

1. MCS is not in your head, people react to nasty shit in our environment as a natural part of our body’s function.

2. I (my body) was so used to reacting, there was some auto-anxiety involved… not “in my head” but anxiety that was learned and out of control. Anxiety bad enough to be confused – like was it a symptom or anxiety causes me discomfort?

The reason I bring this up is ’cause there are a few things I have done over the years that I believe have helped me improve. I am not cured, but since I am always on a steady upswing and will never give up, I thought I would just jot down the things I felt were helpful to me– no matter how controversial they may be (and knowing everyone’s body will need their own personal combo of things to heal!)

1. I got on the macrobiotic diet. I did not eat bad before that, in fact I have eaten all organic & whole foods long before health problems, but this diet has some really helpful ways to keep your foods appropriate for your ailments, the seasons, your body temperature, and healing in general. Over time I branched out and added back in some whole foods not strictly on this diet, but ones that help improve my energy and give me a greater variety of nutrients.

2. I got outta my head. This one will undoubtedly make some people with MCS upset ’cause it’s not a head disease, but with any health problems sometimes the best thing we can do is get the heck outta our own way and STOP for da’ love of gawd thinking about sickness, what causes sickness, how we got sick, being mad we got sick, blaming the world we got sick… etc. (you know the thoughts I am talking about!). I had to start thinking about life and my dreams, and not about “sickness” stopping my life.

3. Risks. I am not recommending anyone with MCS do anything to put themselves in harms way, but for me I had to take some risks to find out what my real limits were. With all the other helpful things I was doing for my health (clean house, clean diet, homeopathic detox, being nice to myself) there would come a time when new limits needed to be tested if I was to ever be able to branch out and do anything beyond my own backyard. Each time I took a successful risk (no matter how many were unsuccessful) I was able to do that much more and that did wonders for my mental health, too.

4. Homeopathic/Medicinal stuff. I tried about a billion things, but the only stuff I used that worked for helping detox my body in a gentle way were homeopathic pills for kids (Newton brand) and eating shiitake mushrooms (takes out heavy metal and junk real gentle, easy and tastes good, too!). I don’t like taking pills of any kind, and I did best when I stopped taking all the pills recommended to me and just took the one homeopathic or nothing at all.

5. I got a therapist! Hell yeah I did, because being sick is not easy to deal with and it turned out I learned amazing skills and coping methods that reduced tons of stress in my life and I only had to go for a short period of time before I learned to support myself emotionally and forgive and live again. What I learned in therapy about how to deal with being sick, rolled over into every relationship for the better.

6. Exercise!! No matter what, even if it’s hard and makes ya fatigued. I did this even when bed ridden and at my worst, getting the body moving and the blood circulating is your ticket to wellness.

7. Nice Home Environment. It never needed to be the Taj Mahal for MCSers, just had to not be freshly painted or super disgusting– I moved around more times than I can count on two hands and generally my house plants cleaned the air good enough each time. The really important part for me was not living right in a city (too much pollution), to have fresh air outside, to open my windows, to walk in the woods, to grow my own food, and have animals around me.

8. Brain re-training. I KNOW, this is the one people in the MCS community have been either seething with hate over, praising, arguing, or banning… but I tried it. Let me just tell ya’ll, I didn’t even watch all the CD’s for the Gupta Program but only up until the specific exercise to re-train your brain and I started doing the exercise immediately everyday. Did I do it like 20 times a day like he suggests? NO way maybe like once a day… nor did I do any of his meditations and all those suggestions on how to breathe ’cause I already had enough self help like that in my bag of tricks. But when I had a majorly bad thought about being sick, or bad symptoms, I did the exercise and then moved on. Brain re-training helped me, I can’t put my finger on it but once I started thinking in a positive direction and got my brain outta auto-sick mind, my bravery and ability to do things doubled up ten fold times 100!

This method has helped me tons with my newest challenge, and that is I am trying to learn to drive a car again after five years of being house bound! (See pic at top!)

I remember when I could not breathe in a small enclosed space with any other human unless they were totally decontaminated, chem free … but this picture below is me and my dad recently in my bathroom hanging a mirror together and the only reason my face looks like it does is cause he was calling the mirror a “f-en bastard” and scaring me with his perfectionism.

My Dad and me hanging a mirror together.

I am not in perfect health, I still have trouble breathing in certain places, I still feel ill to smell the fragrance detergents, I still know I am not reliable or well enough to go out and get a regular job… BUT I am much more functional. Functional enough to begin enjoying my life again and I wanted to put this out into the world– for those with MCS or any disease do not give up, ever! The body always is working towards healing itself, the body always wants to get better and so do you… do not give up on the miracle of healing– even if it’s slow and takes many years. Just know none of ya’ll are alone, I am over here at my little cabin in the woods believing everyday that we all can be healthy– no matter what anyone says!

Xoxoxo

~~~

This post was originally published at The Oko Box, where Leslie blogs an eco-friendly interactive commentary on organic clothing, DIY, environment, pollution, health, organic food, organic farming and wildlife adventures.

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Tags: Environmental Health, Health, Healthy Living, Home, Support

Celebrating new life and healthy choices

Posted on May 12, 2010 by Susie Collins in Blog, Franny Armstrong, Healthy Living

I’m much too young to be a grandmother, so I am Nanny Franny. And with it comes responsibility to life and good health.

By contributor Franny Armstrong.

Me with my new grandson Brock William Daniel, born April 22.

For the first time since I became ill with Multiple Chemical Sensitivity, I feel there is light at the end of the tunnel and it’s not a train barreling towards me. Keep up the faith and WILL yourself to be well. I, for one, envision myself celebrating good health and happiness. This has begun with the birth of my grandson. I’m now Nanny Franny (because of course I’m much too young to be a grandmother at 39).

My daugher Christina with Brock just moments after he was born.

Pepsi or Coke? I get asked that question a lot as an author. It’s just one of the interview questions people like to ask. I have been drinking Pepsi for decades and sometimes Coke when the other isn’t available. My hubby always says, “It’s bad for you.” Yet, he doesn’t think twice about eating chicken wings while drinking beer. Hmmm…high cholesterol and high blood pressure mixed with toxins?

We all make choices to better or harm our health. I believe it’s called “free will.” I’ve decided once again to give up pop and any alcohol then keep working one day at a time to continue on the road to wellness.

I’m happy to say that I’ve begun to react less harshly to fragrances and other contaminants after nearly ten years of “avoidance” and eating healthy. I live in the country next to a golf course but hubby doesn’t want to move. After calling the clubhouse to ask for a warning a day or two in advance of when they spray the FUNGICIDES to keep their lawns beautiful, I never received a reply.

Brock with his sister Alexis.

The first time I became ill, I dropped like a rock into poor health and could barely talk, shook like a leaf all the time, and slept nearly TWENTY HOURS A DAY! I was diagnosed as Bipolar II, yet my psychiatrist, who by the way says I’m NOT crazy (whew), agreed that moving away from pesticides that affect the brain neurologically, not to mention cause cancer, was a great idea in improving my health.

Alas, if you have an “alpha male” like I do, it’s like trying to move the Rock Of Gibraltar with a toothpick. Most of the time I stay indoors typing on my beloved laptop, pouring out the stories from my overactive imagination in the world of paranormal romantic suspense. I even write about environmental illness but those particular books are taking a long time to create. It’s difficult to write what you live, while at the same time also writing about what other people with Multiple Chemical Sensitivity live, too.

Joy goes a long way in promoting good health. My daughter is thoughtful to make sure the baby and I are not exposed to toxic chemicals. No baby powder, no Ivory Snow, no other fragrances either. She’s a gem.

TO YOUR GOOD HEALTH!

NEVER SURRENDER! NEVER GIVE UP!

Hugs,
Franny Armstrong-ParaNovelGirl

Come visit me at ParaNovelGirls and my website.

~~~

Franny Armstrong is a writer of “paranormal romantic suspense” novels filled with private investigators, police, and even Royal Canadian Mounted Police who use their amazing psychic abilities to catch the villains. Franny also uses her technical and journalistic skills to create helpful, upbeat stories and articles to enlighten and motivate people.

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Tags: Children's Health, Healthy Living, Home, MCS, Multiple Chemical Sensitivity

Multiple Chemical Sensitivity: The importance of reducing the toxic load

Posted on May 07, 2010 by Susie Collins in Blog, Eva Caballé, MCS, Media/Videos

I didn’t know that air fresheners and laundry softeners have carcinogenic ingredients. The manufacturers hide all this information because they want us to be unsuspecting consumers who buy products without questioning the ingredients. But there are natural and healthier choices, and in most of the cases they aren’t more expensive.

By contributor Eva Caballé, Spain.

(Editor’s Note: Please help me welcome Eva Caballé as a regular contributor at The Canary Report! Eva’s story about her life with Multiple Chemical Sensitivity has been featured on TCR many times since last summer, and she started guestblogging here in February. I asked her to come join us as a regular contributor, and to my delight she’s said yes! She’ll blog here at The Canary Report on Multiple Chemical Sensitivity, disability rights, social justice, the state of MCS recognition in Spain, and give you tips about living a nontoxic life. You can read her full bio here. Eva makes her contributor’s debut with a video on the importance of reducing the toxic load in your life. The video was first aired at a conference in Spain on healthy cosmetics. Welcome, Eva! Aloha, Susie)

Eva Caballé

Hello, my name is Eva Caballé. I’m an economist from Barcelona, Spain, and I’ve lived with Multiple Chemical Sensitivity for four years, although I was diagnosed only two years ago. I write NO FUN, a Spanish blog about MCS and Chronic Fatigue Syndrome, with information and advice for people who are sick or who want to live a healthier life free of toxics. My blog includes an English section. And I have written a book Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivity) that was published in Spanish last year by the publisher El Viejo Topo .

First of all, I want to thank Silvia Ferrer for inviting me to this conference about healthy cosmetic to talk about MCS, although I have had to record my conference in this video, because my illness doesn’t allow me to leave my house.

Maybe some of you haven’t heard about Multiple Chemical Sensitivity. MCS is an acquired chronic illness which manifests with multisystemic symptoms as a reaction to very small exposures to toxic chemical products, meaning normal everyday chemicals but unnecessary ones like perfumes, air fresheners and laundry softeners.

MCS is a syndrome with four grades of severity, so not all of us who are sick suffer the same level of disability and isolation. Unfortunately, I have the highest severity and because of MCS I have developed other illnesses that make me live completely isolated, without leaving my house, and right now, not even leaving my bed.

The symptoms are chronic and they can become acute when we are exposed to chemical products. Symptoms are different depending on the sufferer, and in my case include dyspnea, tachycardia, dizziness and extreme fatigue. This is the reason why we must avoid contact with any chemical product.

There are two ways of developing MCS: from one single exposure to toxics at a high dose (fumigation, for example) or by many exposures to small amounts over the years, which is my case.

Over the years, our body accumulates chemical substances which circulate in our environment without any controls, in the food we eat, in the water we drink, in the air we breathe, in our beauty products, etc., until the toxic load is unbearable and we end up getting sick, which according to our genetic make-up, it could end up being MCS or other environmental illness like cancer, asthma, and allergies.

If you start noticing unbearable chemicals which you did not notice before or you stop tolerating alcohol or some food, you may be developing MCS. If a perfume gives you headache, if some chemicals give you dizziness or nausea, you may be part of the 12% of people who have chemical sensitivities in a mild degree.

Since my MCS started, before I got the right diagnosis, I had to make changes at home, because the laundry detergent, the toothpaste or for example the shower gel suffocated me. My body guided me to eliminate all the products that were intoxicating me. In spite of not knowing the name of my illness, I started to look for alternatives to substitute for all these toxic products. Two years later, when I knew that I had MCS and that I had to avoid all the chemical products, I realized that my body had led me on the right track.

Then I created the blog NO FUN, first of all to spread a video about MCS that I recorded at home for a TV program, and after that I started to share all that I had learned with other people who were sick and anyone who wanted to live a healthier life free of toxics.

I also have allergies since I was a child, but nobody warned me that I was in a risk group to develop MCS. If I was aware of this, I would have changed my habits and I would have used the products that I use now. I also didn’t know that most deodorants are toxic and there are a lot of studies that link some ingredients with breast cancer.

I didn’t know either that air fresheners and laundry softeners have carcinogenic ingredients. The manufacturers hide all this information because they want us to be unsuspecting consumers who buy products without questioning the ingredients. But there are natural and healthier choices, and in most of the cases they aren’t more expensive.

Each day, there are more children with allergies, asthma, with celiac disease, dermatitis, even cancer. MCS is growing rapidly and also affects younger people, even children. This horrifies me and I am ashamed to live in a world where economic interests are put before health, where they let us get sick and then they abandon us with no help.

I decided to write a book with my history in part to denounce all of this, because I don’t want anybody else get sick when this can be avoided. While the health authorities do nothing, everyone has the option to change their way of life, to stop using these toxic products and to start using ecological products, which are respectful to our bodies and the environment.

I only wish that my experience is useful in preventing others from getting ill.

~~~

Eva Caballé blogs at NO FUN.

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Tags: Children's Health, Environment, Environmental Health, Environmental Illness, Fragrance, Healthy Living, MCS, Multiple Chemical Sensitivity, Video

Open tabs

Posted on May 04, 2010 by Susie Collins in Blog, News, Susie Collins

A few web pages I’ve been reading this week.

Environmental Working Group's Shopper's Guide to Pesticides. Clip and take with you to the market!

Environmental Working Group’s Shopper’s Guide to Pesticides, a guide to take with you when shopping for fruits and veggies.

Writer and disability advocate Sharon Wachsler popped up on my radar in a few places this past week. Here’s her Multiple Chemical Sensitivities Information Page at Massachusetts CFIDS Association. Here’s her website Sick Humor Postcards: cartoons that take a twisted look at life with disability (good laughs). Here’s her Home Page with listings of all her online writing courses and other amazing activities. And of course her blog After Gadget, which she launched following the passing of her longtime service dog Gadget.

Healthy Child, Healthy World is a great resource for information about the toxicity of modern fragrance.

Wendy Standish Unscented Body & Bath Care makes makes soaps and shampoos from scratch, using vegetable oils.

Jody Smith at EmpowerHer gave The Canary Report two shout outs this past week: one on a post about Martin Pall’s research and one on Lourdes Salvador’s guestblog on Electroconvulsive Therapy.

Start Up Nation is a great site for inspiration about starting your own business.

Boston.com has some incredible photos of Iceland’s Eyjafjallajokull volcanic eruption. Makes the vog here look like steam from a tea kettle.

Euroclean HEPA vaccum: This is the vacuum I own.

This is Dr. Grace Ziem‘s explanation about the difference between Allergies and Chemical Reactions; Multiple Chemical Sensitivity is not an allergy!

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Tags: Children's Health, Healthy Living, MCS, Multiple Chemical Sensitivity, Pesticides, Products

Leslie’s Land and Luck Cabin, a green dream come true

Posted on Apr 12, 2010 by Susie Collins in Blog, Healthy Living, Susie Collins

Leslie Richard from The Oko Box bought a beautiful piece of wild land with a tiny Luck Cabin, where she’s found a little slice of heaven! Come take a walk with her and a friend.

It’s always wonderful to see a canary’s dreams come true. I met Leslie online two years ago, shortly after starting The Canary Report. We enjoyed each other’s blogs from the get go and she’s a founding member of our Canary Community. Her love of nature and knowledge about living a nontoxic life is inspirational, and she does it all with smarts, determination, creativity, and a wicked sense of humor. She’s an eco-warrior goddess who walks the walk.

Leslie checking up on tadpoles.

Leslie’s chemical sensitivities are acute, and I’ve watched her struggle to keep her good health in various environments. Well, I’m happy to report that she’s recently bought a beautiful piece of wild land with a tiny Luck Cabin, where she’s found a little slice of heaven! With the help of friends, she’s putting in new flooring, a claw foot tub, compost toilet, a kitchen and more.

A friend of hers came to visit and made the above video tape during their walk in the woods. It’s great fun to hear Leslie’s voice for the first time– and of course it’s great fun to see Leslie in action tracking rabbits, deer, and even birds soaring high above.

Leslie blogs all about life as an eco-girl, so be sure to visit The Oko Box Blog for details about the Luck Cabin and more. If you’re like me, you’ll get hooked in an instant and want to go fetch your Oko Box fix first thing every morning!

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Tags: Healthy Living

Why my life is better because of Multiple Chemical Sensitivity

Posted on Apr 07, 2010 by Susie Collins in Amy Ludwigson, Blog, MCS

Through all the pain, I have found a sense of peace and contentment.

By contributor Amy Ludwigson.

In the fresh air of South Africa.

It took me a long time to realize how much I had been blessed because of the experiences that I have gone through with Multiple Chemical Sensitivity. If I ever saw this statement when I was really sick, I probably would have cursed the person that wrote it.

Yet, through all the pain, I have found this sense of peace and contentment that I do not believe you can find without a little bit of pain in your life.

The most important thing was that I learned to love:

I always thought that I loved, yet when faced with all the comments and laughs from people who think you are crazy, you are really tested. I was tested and I failed. I became so angry with the people around me for not only not understanding, but also for being ignorant and doing things around me that made me sick. And it still happens: my best friend came over just the other day smelling like Bounce.

Yet, over time I learned to love. I learned the kind of love that doesn’t require anything in return. I felt the power of love rise up within me. They say that love cures all and it really does.

When my friend wore Bounce over here the other day, it physically affected me, yet my emotions did not add to the symptoms. Instead of getting angry, judging her for not understanding, and taking the situation personally (which is what happened the first years I had MCS)– I just accepted what happened. I accepted it and loved her.

I also learned acceptance:

Acceptance does not mean that it is ok, it just means that it is what it is. This was one of the hardest things for me to wrap my head around. I worried that if I accepted something, it meant I was saying that it was ok. But that isn’t what acceptance is. Acceptance is just seeing things as they are with no judgment. You come to realize that it is our interpretation and reaction to things that make us suffer.

I used to suffer because I believed that if my friend wore Bounce-smelling clothes, she didn’t care about me. Was this true? No. It was my interpretation of the event that made me suffer.

Still a lot to learn:

Even though I have learned these things, I am constantly tested. I do not always pass, yet I feel that my life has become infinitely better for what I have learned thus far.

My life is also better because…

1. I save a lot of money on personal care products.
2. I have learned that life is more then the material things that I had piled up.
3. I have met a lot of amazing women that have shared these same experiences.
4. The world is always greener, after going through seemingly hell.
5. I have learned what truly matters.
6. I have learned to appreciate the small things.
7. I have learned that happiness is free.
8. I have learned that home is not a place, it’s a state of mind.
9. I have become closer to God.
10. Sensitivity to fragrance has kept me away from boys that I shouldn’t date, fortunately all the bad ones seem to love cologne.
11. It has lead me to seek out some of the most pristine locations in the world, to heal my body and soul. I have stayed at beautiful monasteries in Japan, lived where I have breathed the cleanest air in South Africa, stayed on the beach in Bali and many more beautiful experiences because of the drive this illness has given me.

There are many more… how is your life better because of this experience?

I know that this question can sound ridiculous at times, yet it is easy to become caught in all the negativity and fear that surrounds having MCS. I know that I did, and it did not make the disease any easier to deal with.

Yet, there are experiences and lessons that we have all gained from this disease. Perhaps celebrating those together will help to lift us all?

Peace and Love,

~~~

Amy Ludwigson blogs at Pure Habitat: Live Consciously where she writes about the things that bring joy, that inspire, that make us laugh, and make our lives better for knowing. She is getting ready to launch an online store that sells everything that you need to live consciously – celebrating fair trade, healthy living and environmental responsibility.

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Tags: Healthy Living, MCS, Multiple Chemical Sensitivity

Ask the Canary

Posted on Mar 22, 2010 by Susie Collins in Blog, Products, Susie Collins

Paint used in new house remodeling project has me sick: HELP!

Always test paint before starting the job.

Q:

We are remodeling our new house and the contractor assures me he is using the lowest VOC paint. But I am so sick from just stopping by the house. Even what’s leftover on my coat is making me react. If my husband comes home after being there, my lungs burn, I am light headed and develop blue circles under my eyes. I am still in the inflamed mode, I don’t know what to do. My contractor is certified green and says he understands these issues. I am truly sure he doesn’t understand Multiple Chemical Sensitivity and the severity of how and what chemicals are affecting me.

What the heck do you suggest for the house so that I feel better? I am so sick.

Sincerely,
Foiled by Fumes

A:

Aloha Foiled,

Your “green” contractor obviously does not understand chemical sensitivity; this is a very common problem with green contractors. It’s not unusual for people with MCS to become ill from low-VOC (volatile organic compounds) or even no-VOC paints. The VOCs are not the only chemical in there! Some canaries are okay with low-VOC but not okay with no-VOC paints.

I always recommend a “jar test” before you start painting to see what works for you. You paint a small piece of wood, let it dry, put it in a jar, close the cover tightly, place in the sun for a couple days (or near radiator, don’t let it get TOO hot), and then stick your nose in the jar. You’ll know in a second if it’s okay for you.

Since your place is already painted, you could try to wait for it to offgas to see if becomes better for you; that process can takes days to months to never. Or you can identify a safer paint and then repaint over the toxic stuff. Here are some suggestions for possibly safe paints:

You might want to try milk paint. Here’s a company that I like, The Old Fashioned Milk Paint Company. They have a milk paint product that you can paint over latex. Here’s another milk paint source, The Real Milk Paint Company. There are some people with MCS who cannot tolerate these products, so be sure to test compatibility first.

Some people with MCS like AFM Safecoat. Fresh Aire from Home Depot might work. Some sensitive peeps like Mythic Paint.

Most paint stores have sample sizes you can take home to test. Be sure you test the exact color you plan to use. Again, always be sure to test paints before painting a major section! I hope you are able to remedy this problem very quickly.

Aloha,
Susie

Photo credit

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Tags: Ask the Canary, Healthy Living, Home, MCS, Multiple Chemical Sensitivity, Products

Finishing wood with walnut oil and beeswax

Posted on Mar 18, 2010 by Susie Collins in Blog, Guest Bloggers, Healthy Living, Products

Walnut oil is a great nontoxic choice for finishing wood, and you can easily make your own mixture with beeswax.

By guestblogger Erik Schimek.

Walnut oil is a great choice when creating your own oil and wax mixture due to its safety and low rancidity (it does not spoil easily, when compared with other common oils). It should be combined with beeswax, using the process outlined below.

Finding Walnut Oil and Beeswax

Walnut oil can be purchased in many grocery stores and food co-ops; there’s little difference between organic walnut oil and conventional walnut oil as the oil will not be consumed.

Beeswax can be purchased in bulk at many farmers markets, or in block form on ebay.

Creating the Oil and Wax Mixture

Walnut oil makes a great nontoxic finish for your wood furniture.

Add the walnut oil into the top of a double boiler, on low-to-medium heat. Boil it lightly; do not overheat.

Add beeswax to the double boiler, in a ratio of 2 (beeswax) to 1 (walnut oil). Heat the mixture to the melting point of wax, then stir to combine the oil & wax together.

When completed, the mixture should be solid enough to apply easily with a rag without being “drippy” or liquid. Add additional beeswax or walnut oil as needed.

Note: The leftover mixture can be stored for several years; it will harden into a block and can be reheated for later use.

Applying the Oil & Wax Mixture

Step 1:

The initial coat of oil and wax should contain a higher proportion of oil, to assist in the application process.

Rub the mixture into the wood with a rag. Let it set for a few hours.

Step 2:

A second coat is recommended, with a higher proportion of wax than the first layer. The second coat should also be allowed to set for a few hours.

Step 3:

Take a second (clean) rag and buff off the excess oil & wax.

Step 4:

The oil and wax should be re-applied at least once a year, more often for high-traffic surface areas like floors or desktops.

Guarding Against Rancidity

Although walnut oil is resistant to rancidity, all natural oils will develop a foul odor if they are not boiled, if they are exposed to constant moisture of high humidity, or if they not mixed with enough wax.

Homemade oil and wax, by its very nature, is a natural product and can react differently in various climates.

~~~

This post was originally published at Erik Organic Blog.

Erik has been designing custom cabinets and furniture for nearly a decade. When he became ill due to solvent exposure several years ago, he became acutely aware of hidden toxins in the home which slow down the healing process. Erik Organic was founded in 2007 to provide safe, high quality home improvement options.

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Tags: Healthy Living, Home, Nontoxic, Products