Category Archives: Multiple Chemical Sensitivities

2013 Proclamation From Toronto

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day

May 12, 2013

WHEREAS over 568,000 men, women and children in Ontario live with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia or Multiple Chemical Sensitivities.

Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, is a neurological and autoimmune disease with no known cure. It is characterized by overwhelming fatigue and chronic symptoms that inhibit a person’s ability to work and perform routine everyday tasks.

For those living with Fibromyalgia, a disease characterized by severe pain in muscles, ligaments and tendons, the pain can become so severe that it prevents the individual from working or engaging in any physical activity.

Multiple Chemical Sensitivities, also referred to as Environmental Sensitivities or Intolerance, are initiated by an unusually severe sensitivity or allergy-like reaction in individuals when exposed to a number of different pollutants such as chemicals, perfumes and other environmental triggers.

On May 12, communities across Ontario will join the Myalgic Encephalomyelitis Association of Ontario to raise public awareness, educate the medical profession, raise funds for necessary services and end the stigma and discrimination that accompanies these diseases.

NOW THEREFORE, I, Mayor Rob Ford, on behalf of Toronto City Council, do hereby proclaim May 12, 2013 as “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day“in the City of Toronto.

Mayor Rob Ford

2013… Friends, I Remember and Won’t Forget

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The world lost three amazing women and I lost three good friends in the first three months of this year. Linda left her poisoned body behind in January. Janine left her poisoned body behind in February. Connie left her poisoned body behind  in March.

I’m pretty sure MCS was not mentioned on any of their death certificates, but MCS  certainly had a far greater impact on each their lives, and their family lives than any listed cause of death did.

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Lawmakers’ Fears Of Losing Chemical Weapon Stock Prices Grow

Great spoof!

Sharon Kramer's avatarKaty's Exposure

****SPOOF****

(This is a spoof of the Obama administration’s hypocrisy when turning a blind eye to the illnesses caused by chemical usage in the U.S. Holier than thou, they are threatening military action against other governments who have reportedly used chemicals to also sicken their own citizens. Link to April 28th spoofed article from The Hill by Mr. Jeremy Herb, “Lawmakers Fears Of Losing Syrian Chemical Weapons Stockpiles Grow” may be read at this link and again at the end of this Spoof.)

Lawmakers’ Fears Of Losing Chemical Weapon Stock Prices Grow

By Jerry Rigged Herbs – 04/28/13 02:00 PM ET

week they were, no doubt,As the Obama administration weighs responding to the chemical attack by chemical industry giants on the US food supply, lawmakers say their chief concern is the weapons’ stock prices falling while leaving less dollars available to lobby lawmakers.

Lawmakers from both parties say they don’t support that the U.S. boots chemical uses but are warning that the weapons must…

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Do No Harm? Disabilities and Discrimination: Elaine’s Story

When we are disabled, we can be vulnerable to discrimination, systemic abuse, and having our basic human rights violated. Like Paul Caune points out in the film Hope Is Not A Plan, “When your civil rights are violated you don’t need a good hug, you need a good lawyer”.

At the very least, we need a good advocate by our side.

Despite Human Rights “recognition”, people with MCS/ES are systemically denied safe access to even the most basic institutions of “care” that most people take for granted  due to chemical (and attitudinal) barriers and discrimination, like with the health-care systems, the very system where our health is supposed to be cared for.  I do believe there’s even an oath that some providers take to “do no harm”, but sadly, as those of us with MCS/ES have experienced, that is rarely the case when chemical and environmental sensitivities are concerned. Add more disabilities, and it can become even more challenging and rare to have our needs met with equality, dignity, and respect.

Take Elaine for example. Elaine has MCS/ES and used a wheelchair full-time for nine years because of a hereditary neurological disorder, Spino-cerebellar ataxia.  With luck, medication, some amazing people, and a reduction in toxic environmental contaminants, her mobility is now much improved.

However, due to these disabilities, she had her basic rights violated at a time when she was most vulnerable, when she required health care.

Elaine’s Story

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Access to Safe and Appropriate Dental Care for People With MCS/ES: Part 1

Part 1: The Problems

This is a subject I’ve been meaning to write about for quite some time, as I have my own serious dental issues much like like Doris, whose story follows.

We are dependent on ODSP and their dental program which does not cover our disability related medical needs of materials compatibility testing, safer materials or oxygen, all of which can be absolutely necessary to avoid serious health consequences from chemical exposures in dental offices and from incompatible materials.

Also, as Doris mentions below, most dentists have no experience with our specific needs.

I am aware of other people currently experiencing similar predicaments, in Ontario and elsewhere. I might be posting a few more stories as a part of this series.

We are looking for suggestions on how we can receive appropriate, safe and affordable dental care, which as we know is necessary for more than just dental health.

I will also be posting some steps and solutions available to those with adequate financial means to pay for them, but will start with the problems, and the request for assistance in finding solutions for those of us without adequate financial (and social) resources.

dental tools

What follows is Doris’s story, in her words…

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There’s WHAT in my Baking Soda?

Fragrance chemicals….

Yes, I said it… There are fragrance chemicals in much of the baking soda sold now… Even in the baking soda you bake with. Unless you are extremely lucky… and there’s no rhyme or reason as to when it might be fragrance free, because no-one who might know will tell as to why there are any problems with it in the first place.

For months now, I haven’t been able to get any baking soda that isn’t fragrance (or otherwise) pre-contaminated… and I use it instead of soap products, which I don’t tolerate, to clean me, my teeth, my clothes and everything else that needs cleaning… Because my body doesn’t tolerate soap, even organic olive oil soap, probably because there’s something about modern lye that doesn’t agree with me…

If I lived in a cave, it might not matter, but I’m stuck here in the suburbs, and despite being housebound, there are people who make assumptions on my rare appearances outdoors, like when I have to go to the recycling and garbage bins… And I am just well enough to notice, and to care… And it just doesn’t feel good physically, or emotionally…

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My local Bulk Barn store owner picking up 50 lbs of fragrance contaminated baking soda during a February snowstorm

The most recent Arm and Hammer bulk sample, was even worse than the previous one, although the type of contamination is different…
The owner/manager says he took the sample from a brand new bag he just cut open and used the jar I had given him when he picked up the 50 lbs of fragrance contaminated baking soda I’d purchased in December. He was even so kind as to deliver the jar full.

Arm and Hammer is saying there is no way their stuff is contaminated before it goes in the bag, Bulk Barn won’t tell me who the middle man is, and the bags are really unlikely to pick up contamination during the time between anyway – but I’ve had fragrance contamination on the INSIDE of the bag, when the outside had no fragrance residue.

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Tax Time: Medical and Disability-Related Expenses

Tax time is approaching yet again, and there are some disability related tax credits available in Canada, even for people with MCS/ES (some of which I will post below).

There are also tax credits offered to people who need to retrofit their homes for medical reasons:

Renovation or construction expenses – the amounts paid to make changes to give a person access to (or greater mobility or functioning within) their dwelling, when that person has a severe and prolonged mobility impairment or lacks normal physical development.

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Worth Reading: Other Bloggers Write About MCS/ES and ME/CFS

Worth Reading

Fergiemoto wrote about the challenges she faces due to having MCS and fragrance chemical proliferation. I love her illustrations!  See Human Canaries and Friendship.

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Sharon, a writer and service dog partner who also has Lyme Disease and other disabilities, wrote about how MCS affects her life here: How MCS Affects Sharon

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Phoenix Rising posted this great piece by Carol Schmid who examines what it is about the nature of ME/CFS that makes it likely to generate skepticism. There are many similarities with MCS/ES. See:  The ME/CFS Stigma

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Affordable, Healthy Housing Project in the Laurentians Deadline Extended

This is good news for people who are willing to give up their proximity to friends and family in order to live in a medically required healthy housing community. I’ve filled out my application. I can’t wait to live somewhere I can safely go outside again without being assaulted by chemicals from other people’s dryer vents or chimneys. The Laurentians are a beautiful place to be.

The Laurentians

From Association pour la santé environnementale du Québec – Environmental Health Association of Quebec | 6 Trianon, Dollard-des-Ormeaux, Québec H9A 2H8

Affordable, healthy housing project in the Laurentians deadline extended to March 1st, 2013

Have you registered? Did you fill the NEW form and return it to us?

If you haven’t done this yet and you are interested in living in affordable, healthy housing for people suffering from environmental sensitivities (multiple chemical sensitivity and electro sensitivity), please call us immediately at (514) 683-5701.

You can find the form on our website (by clicking on the brown button ‘Affordable Housing’, which is on our Home page), fill it out, print it, sign it and mail it back to us.

If you need help filling out the form or if you don’t have a printer and/or cannot leave your home to post it, please contact us. We will help you fill the form! It is important that your form reaches us on March 1st 2013 by 5 p.m.

Did you buy your bricks?

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Hospital Protocols for People With MCS/ES

hospital

Some hospitals around the world are developing fragrance-free policies and other less toxic practices, but most health-care environments can still be dangerous places to be for people with MCS/ES, presenting enormous challenges if health care services are needed, as I quoted from the ES-MCS Sensitivities Status Report in the post Canadian Statistics on MCS/ES.

“For ES-MCS sufferers the ideal of ‘patient-centred care’ is currently in stark contrast to realities within the health care system. Knowledgeable healthcare professionals and support workers are so few as to be virtually inaccessible most of the time. For moderately or severely chemically sensitive persons, physicians’ offices, clinics and hospitals commonly are unsafe places to wait, consult, or undergo procedures because patients can be exposed to many symptom triggers emitted from furnishings, cleaning and laundry products, disinfectants, and personal care products on staff or other patients, making their conditions worse. Fragrance/scent-free hospital, home care and rehabilitation services are very rarely available, and there are no chemically safe emergency shelters. Consequently, patients with severe chemical sensitivities may avoid seeking care, risking further deterioration and chronicity, thereby being “caught between a rock and a hard place.”

It can be a difficult decision for many of us when we experience symptoms, whether or not to have them checked out. Sometimes we wait too long, other times we just can’t go because the going is too dangerous for our health. Toni Bernhard touches upon it in Psychology Today, although MCS/ES adds another layer of complications to the decisions:  “5 Tough Choices You Face When Chronically Ill or in Pain

If a trip to the hospital is required, it’s best to be as prepared as possible. If it’s not an emergency, then your choice of the following documents can be forwarded and discussed in advance. Otherwise, carrying paper copies or discs with us at all times could be warranted, in case of emergency.

The following is a list of the best protocols and websites I’ve found, with important resources and documents for people willing and able to take the risks to advocate for themselves or to provide to others so they can do it on our behalf if we are not able.

Hopefully you have the time to go through them and choose what is most suitable for you before the need arises. With any luck, you won’t need them, but it’s good to be  prepared “just in case”. It will take a long time to prepare your local health care providers with protocols to reduce harm (we’re nowhere near the eliminate harm stage)  in advance.

A lot more needs to be done, because until the systemic issues are resolved, for too many of us, it’s far too dangerous to try to access health care.  The necessary negotiations are not feasible when severely disabled, ill, and in need of immediate care that does not exist.  These resources require the ability to work to implement. And there’s no guarantees that if you make progress once, the progress can be built on the next time, as far too often, it’s a start all over again from the beginning process.

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