Tag Archives: MCS

Some Fragrance Contamination Effects

Posted on September 18, 2014 | 16 comments

There are days that I am not as peaceful as I would like to be… This is one of them…

Despite most of my fantasies being about a world where we all have clean air, clean water, healthy food, safe shelter and clothing, and care about each others well-being, I admit to occasionally entertaining various “revenge” fantasies regarding those who allow toxic chemicals into everyday products and materials, especially those in the fragrance industry…

I have had different fantasies over the years, despite in my heart of hearts, not wanting anyone to suffer…Today another revenge fantasy emerged (since some people just don’t understand the harm their actions cause others, unless they personally experience the same or similar harm):

The people who allow toxic chemicals to be used in colognes and other fragranced products deserve to be locked into a room with no ventilation, to inhale the fumes from 20 opened bottles and packages of those products (like soaps, laundry, personal care and cleaning products) for 24 hours, no matter what happens to them while they are in there.

eau de not fresh

With their families and friends watching via live-stream somewhere else…

Ok, I’ll be a little considerate…maybe when they go unconscious or delirious, they could be taken to a hospital, to a room filled with toxic sanitizers, PVC/vinyl fumes, perfumed and cologned doctors and nurses… only to be told that their symptoms were all in their head.

Why, you might ask, would I wish such a thing on someone today?

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Posted in Air Quality, Brain, Chemicals, Disability, Environmental Health, Fragrance, Health, Neurotoxicity, Pollution

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Day 256 In the Pursuit of Love (IIAW A “Sister’s” Journey)

Posted on September 12, 2014 | Leave a comment

Colleen and her friend Beth discuss statistics and friendship challenges and benefits in another revealing post for Invisible Illness week…
Just like Colleen waited for years to get officially diagnosed with MCS, so did I, and for mainly the same reasons.
I knew that the doctors at the time knew nothing about it (or they would have given me a clue as to what the early signs were years ago).
Eventually I came to realize that statistics ARE important (to decision makers), and if we don’t make the effort to get an official dx (I say effort, because many people go from uneducated doctor to uneducated doctor for years… see my post about good news for Ontario to understand what a major deal the announcement of training 2 doctors in environmental health is) then in the eyes of decision makers, we do not exist.
That means that services for us continue to not exist also…
But when we speak up, things change.
I love how Colleen is speaking up, and how her friends are too!

Colleen's avatarLife in the City with a Future

PERSON

Image17meshovelFor day 5 of Invisible Illness Awareness Week, my buddy Beth has agreed to give her perspective of what it is like having a friend disabled from MCS. In a Canadian study, in 2010, over 800,000 people were diagnosed with MCS (Multiple Chemical Sensitivities) an 31% increase in 5 years. Those during the same time period with one or more of Chronic Fatigue, Fibromyalgia, and MCS were 1,415,000 (a 25% increase). This study excluded children with MCS and focused mostly on people with MCS diagnosed by a doctor. I personally went undiagnosed for decades. I avoided the triggers of perfume as much as I could. I figured there was nothing a doctor could do for me anyway and why be just another statistic. I now understand how important it is for our governments to have accurate statistics. The more people who give MCS a voice — the more likely we…

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Posted in Change, Chemicals, Disability, Education, Environmental Health, Fragrance, Friendship, MCS/ES

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Day 254 In the Pursuit of Love (IIAW In Mom’s Words)

Posted on September 11, 2014 | 2 comments

A mother’s thoughts on having a daughter with disabling MCS

Colleen's avatarLife in the City with a Future

Image (11)I asked my mom for the ultimate act of love this week. I asked her tell about her journey having a daughter who is disabled with MCS. Mom asked me for questions for her to answer. These are her words:

1. What did you first think when I told you I was disabled with MCS and you would have to eliminate all toxic chemicals from your life if you wanted to physically see me?

I thought, God. How do we do that — chemicals are everywhere? How bad is this going to get for my poor daughter? And of course, I thought about myself also. I have lived for so long doing everything using all kinds of awful stuff and not even paying attention until you get an awful wake up call and have to hope and pray it is not too late.

2. Two years after my disability from…

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Posted in Child Health, Disability, Environmental Health, Health, MCS/ES, Multiple Chemical Sensitivities

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It’s What You Can’t See that Hurts You

Posted on September 10, 2014 | 9 comments

What it can be like having a friend with MCS… from a real friend <3
“I would go through all those steps, put on my safe clothes and Colleen would still say “Nope. Still contaminated.” I wanted to punch something. Here I would do just about anything for a friend, and it still didn’t work. It didn’t dampen her spirits, though. After that happened, she would just smile and say how I had worked harder than anyone else to solve this problem, and it was too bad that it hadn’t worked. That really didn’t help me much. I still felt frustrated.”

Joe's avatarStepping Out with an Agoraphobic

Invisible Illness

This week is National Invisible Chronic Illness Awareness Week. It runs through September 14th. It was suggested to me that I write about my experiences in dealing with my illnesses, and I will – perhaps at a later date. Instead of looking within myself, I thought I would broaden the scope of my focus and talk about an invisible illness that has hit close to home, and changed how I live my life.

To have a loved one succumb to an illness is one of the most painful things imaginable – and that pain applies to friends, as well as to family. What is even worse is when that illness is new, uncommon, or even invisible. This is what has been happening to my friend, Colleen, who has Multiple Chemical Sensitivities, a crippling disease that has rendered her disabled.

I must admit that sometimes I don’t feel like…

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Posted in Disability, Environmental Health, Environmental Sensitivities, Fragrance, Friendship, Inspiration, MCS/ES, Multiple Chemical Sensitivities, Support

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Severe MCS/ES… What Does It Mean?

Posted on September 3, 2014 | 16 comments

To some degree, severe MCS/ES (like pain) is subjective. In other ways it’s a moving target, as we can be fine (or almost fine) one minute, and be completely incapacitated the next hour (day, week, or month) from an exposure, or combination of exposures. One day, a perfume exposure during lunch with friends might “just” give someone a throbbing headache for the rest of the day, but the next day, because there was also a cloud of diesel smoke, a fragrance contaminated piece of mail, someone installed wi-fi in the apartment next door, and someone else’s dryer vent was pumping out chemicals when we walked by with the dog, the same 3 breaths of perfume at the pet store we were trying to buy dog food from, could send us to bed for a week, or longer.

To make matters more difficult for others to accurately assess (and assumptions and clueless opinions are rampant where invisible disabilities are concerned), the recovery period, when most incapacity takes place, occurs when no-one is around to witness the effects, as many symptoms are delayed reactions. This means that people with severe MCS/ES are usually only seen during better moments, not when we’re at our worst.

severe mcs es

Something else I often see is that people’s ability to tolerate change and adversity varies greatly. Some people fall apart when faced with the slightest challenge, while others can endure unbelievably difficult circumstances and suffering without ever complaining.

One person’s severe is another person’s “just another day”. And, as I found out, when we think things are as bad as they can possibly be, they can get 1000 times worse (especially where brain function is concerned). This can really confuse people, ourselves included…

That said, there are tools that have been designed to help medical professionals assess all kinds of health and disabilities. And accurate assessment is especially important when applying for disability benefits.

What follows are a few tools that can help us understand. This information is not meant for acquiring disability benefits. I’m providing it for educational purposes only.

How can “sensitivity” symptoms affect life?

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Posted in Brain, Disability, Environmental Health, Environmental Sensitivities, MCS/ES, Multiple Chemical Sensitivities

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The Fragrance-Free Soapy Water-Bucket Challenge!

Posted on August 28, 2014 | 11 comments

I challenge everyone who uses any products that have fragrance or parfum listed as an ingredient  to pour a bucket of fragrance free, non-toxic soapy water over your head, to draw attention to the fact that fragrance chemicals and ingredients in everyday personal care, laundry products, and cleaning products are making people sick and disabling them, and that fragrance-free, non-toxic products are healthier for everyone.

This looks like a it was bucket full of fragrance-free soapy water!

This looks like a it was bucket full of fragrance-free soapy water!

Please donate to these two organizations that are helping people who have been injured by fragrance (and other chemicals) find medically required, safe, non-toxic housing:

ECOASIS

http://www.aseq-ehaq-en.ca/ecoasis.html

re|shelter

https://reshelter.org/grant-programs/

 ♥

Thank you for participating!

P.S. You can use WARM WATER!

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Posted in Action, Environmental Health, Fragrance, Support

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Home Dental Extraction SUCCESS (#1)!

Posted on June 22, 2014 | 27 comments

This is just a brief post to rejoice about the successful home extraction of a rear molar that was causing me unbearable problems.

The dentist who did this takes seriously his oath to “do no harm” and did not use it as an excuse to do nothing, like most dentists and doctors are prone to doing when they don’t want to change the way they do things to accommodate someone with disabilities.

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Posted in Accessibility, Dental Care, Disability, Environmental Sensitivities, Health Care, Human Rights, Multiple Chemical Sensitivities

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Property Manager’s Guides to MCS

Posted on March 16, 2014 | 9 comments

From the Centre for Equality Rights in Accommodation (CERA):

Environmental Sensitivities and Housing

“Every year, CERA receives a significant number of calls from tenants being made ill from the poor indoor air quality in their apartment buildings. Most of these individuals suffer from environmental sensitivities and are particularly sensitive to contaminants in the air. With funding assistance from the Ontario Trillium Foundation, CERA recently launched HomeSafe, an initiative to educate tenants and multi-unit housing providers on strategies to improve indoor air quality and create healthier living environments.”

The resources section has some excellent documents that are designed to “help landlords, property managers, and co-operative and condominium boards of directors reduce the health impacts associated with multi-unit housing and create living environments that are as safe and “green” as possible… and make their properties more attractive…”

For example:

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Posted in Disability, Environmental Sensitivities, Healthy Environment, Housing, Human Rights, Indoor Air Quality, Multiple Chemical Sensitivities

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Money, Masks and MCS

Posted on February 5, 2014 | 17 comments

Here is yet another way petro-chemical and wireless pollutants and policies create barriers to access, barriers that personal actions and responsibility alone cannot overcome…

Background: Michellina  wrote about her masked experiences on her blog The-Labyrynth, which inspired Colleen to write about her mask breakthrough on her blog Life in the City with a Future, which inspired me to share her link and post on the subject here, which then inspired Suki to chime in here adding her experiences, as well as a link to some really great resources from from The (US) National Center for Independent Living on environmental health barriers to access, which links back here to one of my  posts! And here’s an example of just how prevalent fragrance chemicals are.

And then… my friend Melody posted this photo, which brings up another issue:

How can we have access to our money when wearing disability related “accessories”?

What about the masks we wear to be able to breathe cleaner air?

What about the masks we wear  to breathe? Or the hats and scarves we wear to keep some of the fragrance chemicals off of our hair? Or the special fabric head-coverings to protect from wireless radiation? These are necessary “accessories” which prevent further disability, and allow some of us to lead somewhat more normal lives, kind of like what wheelchairs are for people who can’t walk.

Do they have these signs (and policies) everywhere now?

How do you manage?

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Posted in Accessibility, Disability, Environmental Health, Environmental Sensitivities, Human Rights

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Report: RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW

Posted on February 3, 2014 | 8 comments

Many of us have been waiting for action for decades, let’s hope that this is the project that finally makes it happen. It has been a long time coming…

‘RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW: PERSPECTIVES OF ONTARIANS LIVING WITH ES/MCS, ME/CFS AND FM’

Recognition Inclusion and Equity the Time is Now

From Varda Burstyn:

At long last, I am writing to let you know about four new groundbreaking reports – products of a 5-year initiative that I and colleagues began in 2008 – that present exciting new research on the three environmentally linked conditions of ES/MCS, ME/CFS and FM, and that develop a wonderful new model of care and support for those living with the conditions in Ontario.

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Posted in Environmental Health, Environmental Sensitivities, Health Care, Human Rights, Multiple Chemical Sensitivities, Policy, Public Health

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