The Canary Report

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

Health care reform at last?

Posted on Mar 25, 2010 by Susie Collins in Blog, Keith Carlson, Policy, Social Justice

While reports state that the legislation is indeed imperfect and will make as many enemies as friends, some semblance of reform is now on its way to the American people.

By Keith Carlson, RN.

President Obama signs health reform into law. White House Photo, Pete Souza, 3/23/10

It appears that health care reform in all it’s tattered and tainted glory has finally passed through both the House and the Senate. While reports state that the legislation is indeed imperfect and will make as many enemies as friends, some semblance of reform is now on its way to the American people. Some behind-the-scenes tweaking will still certainly take place, but it seems that the reform train has now left the station and will eventually arrive at a health plan near (most of) you, with the majority of changes beginning in 2014.

From my personal point of view, this train has been delayed for decades, especially taking into consideration that the United States is the only industrialized nation that does not offer universal health coverage to most of its citizens, or at least guarantee access to such coverage.

According to the information gleaned from articles and online sources, I understand that some of the salient points are thus:

• Parents will be able to keep dependent adult children on their health plans through age 26, and this benefit (which will necessitate an extra fee) will be enacted almost immediately.
• Beginning in 2014, Americans with employer-based health plans who lose their jobs will be able to buy their own (hopefully affordable) insurance without being denied or charged extra due to pre-existing conditions.
• Apparently, chronically ill children will be covered almost immediately, and chronically ill adults may have access to certain pools of coverage quite soon.
• An expansion of Medicaid coverage for the poor now seems to be a certainty after 2014.
• Some tax credits for small businesses will make it easier for coverage to be offered to be employees, and this reform may also be enacted rather soon.
• Medicaid will be expanded to cover an additional 16 million poor Americans.
• Price gouging by insurance companies due to pre-existing conditions will no longer be allowed by the new regulations.
• Insurance companies will no longer be able to cancel the policies of consumers who become ill, a practice that has become all too common.
• Insurance companies will also no longer be able to place a spending cap on the amount of money they are willing to spend on a consumer in any given year (or perhaps over a lifetime).
• In six months, all new health plans will have to cover the full cost of all preventive care.
• Beginning July 1st of this year, low-income seniors on Medicare will enjoy a 50% discount on brand-name drugs.
• By 2019, it seems that more than 90% of Americans will have health care coverage of some kind.
• Most importantly, it seems that reforms of Medicare and Medicaid are in the works, and a complicated array of regulatory reforms may indeed change the face of health care in this country by cutting costs, streamlining the delivery and payment system, and reining in health care inflation.

There is no doubt that conservative pundits will do their best to cast doubt on these reforms in an attempt to turn the American people against what will most likely be billed as “socialism” and a government take-over of health care and medicine. Many will complain that the government has no place in regulating health care, even as those same complainers enjoy the vast benefits of their (government regulated) Medicare coverage. It is ironic that so many Americans forget that Medicare, a government benefit that changed the face of health care for older and disabled Americans many decades ago, is a hugely successful program of government-based health care reform.

It is disgraceful that so many millions of Americans still live without health insurance. Due to the cost of medical care, homes are foreclosed, jobs are lost, lives are destroyed, and the most basic and important health maintenance screenings (like PAP smears, prostate exams and annual physicals) are missed due to lack of insurance coverage.

With both houses of Congress passing this historic legislation, the health care reform train has indeed left the station. There’s no doubt that there will be many arguments and problems along the way, but there now exists the true probability that, within our lifetimes, all Americans will enjoy what the citizens of other industrialized nations have enjoyed for decades.

~~~

To read 10 things that every American should know about health care reform according to MoveOn.org, please click here.

~~~

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!

Photo credit

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Tags: Law, Policy

Mary Canary shares life on the road

Posted on Jan 09, 2010 by Susie Collins in Blog, Guest Bloggers, Keith Carlson, MCS, Media/Videos

The good, the bad, and the ugly side of life in an RV while coping with Multiple Chemical Sensitivity.

Post by guest blogger Mary Rives.

(Editor’s Note: Mary is the wife of Canary Report contributor Keith Carlson. Mary and Keith are currently living full-time in their 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. Read more about their trip at Mary and Keith’s Excellent Adventure.)

On Wednesday, I blogged about how to travel with a little help from your friends, and shared with you a template for a letter you might like to give friends and family before you visit. The letter was written by a friend on our behalf, and has some tips about how to prepare for a visit from loved ones with Multiple Chemical Sensitivity.

While it’s true we are having a wonderful adventure on the road, today I’d like to share with you a video that reflects the darker side of our journey, but of course I am being a pretty good sport! We are looking to switch from this diesel rig to a gas powered one in Texas, just two states away now. The veggie oil thing did not pan out and diesel is worsening my Multiple Chemical Sensitivity, but all this nature is healing it too!

We are 14 intentional communities and 12 states on down the road from Amherst, where we began our journey. We’re hitting our stride with the new lifestyle and feel very blessed and grateful (even though it is as cold here in SE Alabama and NW Florida as it is in New England, for now anyway).

Happy New Year to all–and if you feel like it and haven’t yet, read our New Year’s letter to all on our blog: A New Year’s Missive from Keith and Mary.

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Tags: Chemicals, Environmental Illness, Featured Post, Indoor Pollution, MCS, Multiple Chemical Sensitivity, Toxic, Video

Bob the Nurse’s visit to Hawaii

Posted on Jan 09, 2010 by Susie Collins in Keith Carlson, Susie Collins, Susie's Secret Garden

Fun with a male nurse action figure with too much time on his hands.

I can’t believe I never told you about Bob the Nurse coming to visit me in Hawaii last summer. The Adventures of Bob the Nurse is the creation of Canary Report contributor Keith Carlson. Bob travels around the country visiting and indulging in the local culture in such diverse places as Arkansas, Georgia, Florida and Hawaii, just to name a few.

In addition to taking a canoe voyage in one of my ponds (above), Bob also got lei’d, helped out the chicks, went fishing, stood in awe of the Buddha, and took naps.

Take a look at two full pages of Bob’s Hawaiian vacay here and here. I do hope he’ll come visit again soon!

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Tags: Humor

How to travel with a little help from your friends

Posted on Jan 06, 2010 by Susie Collins in Blog, Guest Bloggers, Keith Carlson, MCS

Advance work when traveling: A letter to friends and family about how to prepare for a visit from loved ones with Multiple Chemical Sensitivity.

By guest blogger Mary Rives.

(Editor’s Note: Mary is the wife of Canary Report contributor Keith Carlson. Mary and Keith are currently living full-time in their 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. Read more about their trip at Mary and Keith’s Excellent Adventure.)

This is a letter my friend kindly wrote for me. I edited it and then sent it to my parents yesterday. I am offering it to anyone as a prep tool should you go visiting with “chem people.” I plan to follow the letter up with an email and call. I suggest you find a friend who would agree to sign off on the letter. Here ya go:

Dear friends of Mary Rives, Keith Carlson, (and dog Tina),

Hi! My name is A.L., a longtime friend of Mary and Keith from Washington, D.C. I was at their wedding 20 years ago on July 2, 1989, and I have traveled and vacationed with them, visited each other long distances, met each others’ families and have been there for each other through many of life’s twists and turns.

As you know, our dear friends/family members are traveling the country in their RV (affectionately known as “Rigatina”) after simplifying their lives, including selling their home and letting go of most of their belongings. They will be experiencing the relief of permanently leaving the long, cold winters of New England that worsened Keith’s pain syndrome and increased Mary’s intermittent low back pain. They’re now living more simply in their radically downsized and carefully prepared non-toxic environment of their rig and have already visited more than a dozen intentional communities, perhaps to find one to live in near like-minded people in 2010. I know that visiting friends and family is an important part of their journey as they make a huge horseshoe trek, now completing the East Coast and soon to travel westward across the Gulf Coast. They will be in touch when they are nearer to your home.

I am writing to you because I’m concerned for Mary and Keith’s health. In addition to Keith’s Myofascial Pain Syndrome and Mary’s intermittent back pain, Mary and Keith have been chemically injured from a severe mold infestation in the attic of their previous home which has predisposed their bodies to being intolerant of many basic products designed for every day personal, home and office use. They have both been diagnosed, and are in treatment by environmental health specialist doctors, for what is known as Multiple Chemical Sensitivity (MCS) or Environmental Illness (EI).

[...]

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Tags: Chemicals, Healthy Living, Home, MCS, Multiple Chemical Sensitivity, Support

The woes of public restrooms

Posted on Dec 28, 2009 by Susie Collins in Blog, Keith Carlson, MCS

Living with Multiple Chemical Sensitivity can make it an enormous challenge to use a public restroom.

Post by Keith Carlson.

Living with Multiple Chemical Sensitivity (MCS), it can be an enormous challenge to be in a public place and simply need to use a bathroom. These days, public restrooms in the United States seem to have been permanently inoculated with so-called “air-fresheners” that make relieving one’s self an adventure in being actively poisoned.

For me personally, my struggles with public restrooms are exacerbated by the fact that I have an underlying medical condition (enlarged prostate) that necessitates fairly frequent urination, and this, my friends, can lead to some exceedingly challenging scenarios.

Just the other day, I was in a Trader Joe’s store here in Atlanta, where we’re visiting for the holidays. Feeling the urge, I sauntered warily towards the men’s room, hesitant to open that door but feeling that I had no real choice in the matter. Pushing the door open, I was hit with that disappointing, maddening and altogether overwhelmingly frustrating sensation that I had discovered—yet again—another public rest room that is simply verboten for my use. Sigh.

While I have no problem with peeing outdoors (which, in fact, is altogether preferable on so many levels), there are numerous situations in which doing so could lead to embarrassment, dirty looks, and—worst of all—a permanent label as a sex offender. Bearing in mind that many states do indeed prosecute public urination as a sexual offense, I frequently find myself at a loss as to what to do in order to heed nature’s (increasingly urgent) call.

You may then be led to ask, “Why not just use the stinky bathroom anyway, Keith? What could possibly happen to you?”

And I would reply, “Well, first of all, the clothes that I’m wearing can very quickly become saturated with the toxic smell of the substance in question. Although I do not develop respiratory symptoms like my wife does, I will find myself incredibly irritable, often with confusion, dulled mental faculties, and a difficulty finding words when speaking. A secondary and unfortunate sequela of my exposure to such a substance is that my wife will then react to the aura of chemical toxicity surrounding me, and she will then begin to have bronchospams, headaches, and a host of other symptoms which would have been otherwise preventable had I not entered that rest room in the first place.”

As you can see, the fallout from a simple visit to a men’s room can have far-reaching health consequences for both myself and my wife, and now that we are traveling, it is even more crucial for us to continue to use the toilet in our chemically safe mobile home when we can. Still, we often find ourselves in situations where we are far from our mobile haven, in need of a rest room, and unable to do what so many other people take for granted on a daily basis.

A “rest room” should truly embody the literal meaning of its name—a place for rest, to relieve one’s self and emerge refreshed and ready for the next chapter of one’s day. For those of us who are canaries in the coal mine of the toxic world around us, they are far from a restful place of repose. From the scented sprayers on the wall to the deodorizers in men’s urinals, public rest rooms are dangerous, exasperating, poisonous places to be avoided at all costs. When a safe rest room is found, it is cause for celebration and relief (both mental and physical). But when one needs to go and there’s nowhere to do so, it is a maddening moment of living in a toxic world.

~~~

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!

Photo credit.

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Tags: Chemicals, Fragrance, Indoor Pollution, MCS, Multiple Chemical Sensitivity, Perfume, Products, Sick Building, Stink, Toxic

Toxic tiny bubbles in the tub

Posted on Dec 27, 2009 by Susie Collins in Blog, Keith Carlson, Products

Post by Keith Carlson.

Shiny Suds Commercial – Watch more Funny Videos

~~~

Come follow our RV traveling adventures at Mary and Keith’s Excellent Adventure.

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Tags: Chemicals, Children's Health, Home, Humor, Indoor Pollution, Products, Toxic

Mary and Keith launch their excellent adventure

Posted on Nov 05, 2009 by Susie Collins in Blog, Keith Carlson, MCS

The peripatetic nurse is on the road.

Post by Keith Carlson.

Dear Readers,

My wife and I are now on the road, making our way down the East Coast towards the warmer weather. Our travel blog, Mary’s and Keith’s Excellent Adventure, is becoming increasingly robust with photos, videos and tales from the road.

Our new lifestyle poses many exciting challenges and novel experiences, one of which is health care. While we still have health insurance from my old job until November 30th, the next step will be securing (at least) minimal catastrophic coverage from that date forward, and then making sure we take very good care of ourselves while we travel. Good nutrition, exercise, high quality supplements and a plethora of fresh air are undoubtedly part of our personal health prescription.

I will be reporting on our health challenges and successes along the way, and hope to talk to other full-time RV’ers to see how they handle health on the road (although many full-timers are retired and relatively secure with Medicare coverage).

Stay tuned, and please visit our travel blog for further updates!

This post was originally published at Digital Doorway.

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

A chemical nightmare at work

Posted on Jul 28, 2009 by Susie Collins in Blog, Keith Carlson, MCS, Worker's Rights

There are poisons and toxins everywhere that can damage our health and cause us temporary or permanently debilitating symptoms that directly impact our ability to fully function in the world.

Post by Keith Carlson.

Last week, I was sitting in my office and began to notice an odd smell, sort of sickly sweet. Ignoring it against my better judgment for several days, I was even told by my astute boss—who is well aware that I have Multiple Chemical Sensitivity (MCS)—that something seemed amiss.

Since last week, I’ve been noticing increased confusion, memory loss, and a marked increase in my level of stress and anxiety. Granted, we are in the midst of selling our home and radically changing our lives, but this past week my emotional life has been over the top and I have been feeling physically unwell.

Today, my (chemically sensitive) wife came to visit my office, remarking immediately that my office seemed incredibly toxic to her and that I should leave immediately. Just prior to her arrival, I had literally been crawling around on the floor, trying to “sniff out” where the offending odor was coming from, an odor that had by now become almost overpowering in its sweet disgustingness.

With my nose on the top of the heat register, I detected the source of the odor emanating directly from the heater, even though it wasn’t on.

Bringing two colleagues into the office, they both agreed that the smell was very strong and that I should leave for the day and we would try to get to the bottom of it. Just then, one colleague mentioned that someone had moved into the office directly below mine last Tuesday, and perhaps there was a connection. Looking back, it was indeed Tuesday or Wednesday of last week that I began to feel unwell and that the faint smell had begun to make itself known.

Running down to the first floor with my wife, we quickly located the office directly below mine (which I had never before noticed), and although the door was closed and locked, the smell coming through the cracks was absolutely the same odor now filling my office on the second floor, although the intensity of it as it emanated through the door was enough to send us reeling.

My guess is that the new resident of this office installed a “Plug-In” on the day she moved in, the sort of plug-in that is filled with noxious liquid fragrance that is heated via an electrical outlet. These insidious and ubiquitous devices have taken over, with Americans of all economic stripes convinced that their homes will not smell “clean” without such unhealthy trash that poisons the very air that they and their children breathe.

Since the building manager was out, I sent him an urgent email explaining the situation, left work early (with dizziness and confusion continuing), and will not return to my office until the space has off-gassed for several days.

So, although I have fought for a fragrance-free workplace, low-VOC paints, “green” cleaning products, and other accommodations, this employee who moved into the office downstairs unwittingly created a toxic environment for me that has subsequently caused me a week of distress, confusion, and other neurological symptoms that will, I hope, decrease as the next few days allow me to detox from its deleterious effects.

When one has MCS (or even if one does not), there are poisons and toxins everywhere that can damage our health and cause us temporary or permanently debilitating symptoms that directly impact our ability to fully function in the world.

I was glad to get to the bottom of this situation, and hope that it will be rectified shortly and that I can recover from the impact of this unfortunate chemical event.

This post was originally published at Digital Doorway.

Link to image at NoFragrance.org.

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Tags: Air, Chemicals, Children's Health, Environment, Environmental Health, EPA, Fragrance, Home, Indoor Pollution, MCS, Multiple Chemical Sensitivity, Perfume, Products, Sick Building, Stink, Toxic, Work

The challenge of finding a nontoxic recreational vehicle

Posted on Jul 19, 2009 by Susie Collins in Blog, Keith Carlson, MCS

Multiple Chemical Sensitivity: An Inconvenient Reality

Post by Keith Carlson

As my wife and I shop for a recreational vehicle in which to spend the next year or two as we live, work and play, our Multiple Chemical Sensitivity has become even more of an inconvenient reality.

We all know that new car smell, and many people equate that smell with freshness and newness. We also know the particular smell of a new shower curtain which is now widely understood to be the off-gassing of pthalates and other very unhealthy chemicals. These are modern realities, and they’re making us sick.

Recreational vehicles (RVs) are manufactured just like homes and cars—they are filled with particle board, formaldehyde-based materials and nasty chemical-laden furnishings that off-gas for years. In our meanderings, we have entered several newish RVs and the chemical aura has hit us both like a brick wall, driving us out the door in seconds. One wonders about all of the retirees out there who buy brand new RVs and then hit the road. Do they develop cancers, memory loss or early-onset dementia more quickly than others? After all, they are living in a small area which is often sealed tight—a literal chemical soup.

Many people with Multiple Chemical Sensitivity end up homeless because they can’t find safe housing. Small homespun businesses (like Taylor Designs) have indeed sprung up in an effort to fill a niche, creating “safe rooms,” MCS trailers, and other spaces designed to make living and sleeping healthy for those with environmental illnesses. Publications like “Our Toxic Times” and “The Canary Report” offer resources, advertisements and classifieds for those seeking safety and healthy alternatives, and many do-it-yourselfers take a shot at retrofitting trailers, homes and other structures to suit their needs.

For us, our only alternative may be a refurbished Airstream trailer, gutted and professionally retrofitted by Taylor Designs several years ago and now available through a private seller. However, what we really want is an all-in-one RV in which we can live, work, sleep, eat and drive, but every vehicle we look at or consider has been treated with, or is constructed with, materials that can put our health at risk.

Yesterday, after combing through Craig’s List, Mary found an RV that sounded great, and she called the owner. After a long and detailed discussion during which she patiently explained our MCS, the owner finally acknowledged that he has put Bounce dryer sheets in all of the storage compartments of the rig in order to ward off mice and “freshen” the air. That potential sale is going nowhere, of course.

So, we continue in our search, narrowing it down, looking under every rock, and may end up spending more than we care to on the retrofitted Airstream and a diesel pickup truck with which to tow it. This is another consequence of MCS—we can often end up spending more to get what we need because so much of the world is stacked against us. It’s a chemical soup out there, and we simply want to remove ourselves from the broth.

This post was originally published at Digital Doorway, my blog on creative expression, nursing adventures, reflections on healthcare, thoughtful reverie, thoughtless repose, and other flotsam and jetsam.

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Tags: Air, Chemicals, Environmental Health, EPA, Fragrance, Healthy Living, Home, Housing, Indoor Pollution, Leisure, MCS, Multiple Chemical Sensitivity, Nontoxic, Perfume, Products, Sick Building, Stink, Toxic

Health Coaching and Multiple Chemical Sensitivity

Posted on Jun 07, 2009 by Susie Collins in Blog, Keith Carlson, MCS

Returning to the subject of becoming a health coach, there are several ways that this vocational choice could serve me and others, especially related to Multiple Chemical Sensitivity (MCS).

Post by Keith.

As I have previously written on Digital Doorway, when you have MCS, working in health care can be like a minefield of chemical exposure. From hospitals to medical offices to nursing homes, disinfectants, air fresheners, cleaners and other chemicals abound, and the health care worker with MCS can simmer in a toxic soup for thirty or forty hours each week, compromising his or her health while trying to help others. Even though I have never worked in a hospital since graduating from nursing school (something I was told would be professional suicide), my chemical exposures over the years have been significant and occasionally compromising.

So, I realize that developing yet another way to earn a living without reporting to an office or facility is a creative way to be gainfully self-employed without putting myself at increased risk of unnecessary chemical exposure. As a coach, I could interact with coaching clients by phone and online, and those individuals could wear as much cologne or use as much Bounce and Tide as they wanted, and I would never have to know!

I also can see that, as a health coach, I could reach out to the MCS community, offering an educated shoulder upon which those with MCS could lean for support and advice. There are only so many places that people with MCS can go for support and guidance, and I am open to becoming one of those conduits for information and referral. There may be others significantly more educated about MCS, but I have lived it, and my experiences have already drawn many people to me who are looking for help as they navigate those toxic waters.

There are numerous pools from which potential coaching clients might arise: nurses, nurses with MCS, non-medical people with MCS, health care workers in general, and those simply seeking solace and advice in a frequently disturbing and unhealthy world. Coaching those with Multiple Chemical Sensitivity is a potential way in which I could empower individuals who often feel powerless in the face of a world that is largely indifferent to their suffering.

I frequently face the fact that I do indeed have MCS, and it does significantly impact my life on a daily basis. There are places where I and others with MCS can receive support, “The Canary Report” being one particular high-quality site that brings the MCS community together in meaningful ways. Perhaps I can offer my growing experience and knowledge in order to benefit others while allowing me to work from home, thus limiting my occupational exposures and increasing my ability to make a living. I in no way want to be isolated or quarantined with MCS, but creating a life wherein I can work independently and still serve others is a win-win situation that could have far-reaching benefits for many people, including me.

Speaking of “The Canary Report”, I want to thank Susie for her desire to reproduce my last blog post about coaching, for it was her request to do so that sparked the idea that I could offer targeted coaching to the MCS community. Discovering how to do this will be a process that I look forward to exploring, and I will share a great deal of that process here on Digital Doorway.

This post was originally published at Digital Doorway.

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Tags: Chemicals, MCS, Multiple Chemical Sensitivity, Support, Toxic, Work