Tag Archives: environmental illness

Safe Housing Survey

Do you (or will you) need safe housing?

Until the end of November 2019, Health Risk Navigation Inc. (HRNI) is conducting a much needed (yet simple) survey of the housing needs of the chemically injured in order to have quantitative data to show housing providers, communities, policy, and decision makers, funders, and other relevant parties.

This kind of data doesn’t exist currently, so even though safe housing is our core need, there are no official documents that anyone can easily point to.

More details are available on their FAQ page:
https://www.hrni.ca/Housing-Survey-FAQ.php

Some of you may have already done the 1st edition of this survey in June of 2019, when it originally came out. Thank you! Even though the survey now has a different format, those responses are not lost.

You don’t have to do the revised one, but it would be helpful if you could spend the 10-15 minutes to do so… just mention that you completed the original on the last page where people are asked to share any additional comments.

The questions of the initial survey and the current survey are identical, except that the current survey now has four new questions at the beginning  that seek  consent of the respondents to save and share info (largely due to EU privacy laws).

Every question also gives an explanation as to why the data is requested. Additionally, every question (except the consent questions) now gives us the choice to answer “Prefer Not To Say”.

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MCS Survey for May 2019

Survey for People with Multiple Chemical Sensitivities (MCS) and/or Environmental Illness and Injury (EII)

Guest post from Mordecai Cohen Ettinger,
The Health Justice Commons

I’ve had MCS for nearly 20 years. I’m a survivor of of the Three Mile Island partial nuclear meltdown, excessive x-ray radiation from medical treatment as a child from a teaching hospital that has since been ongoingly investigated for bioethics violations, and successive exposures to lead and mold from reckless landlords.

I’ve been a community activist for many years, along with a scholar and teacher of Critical Science, Technology and Medicine Studies.

In late 2016, I founded the Health Justice Commons, a non-profit. Our mission is to re-imagine and remake healthcare for our times.

To support efforts for MCS Awareness Month, we want to address the gap of basic research of our experiences.

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What’s it Like to Have MCS/ES? Part 3: Toast Chaos

MCS/ES (multiple chemical sensitivities / environmental sensitivities)  is a disability recognized by the Canadian and Ontario Human Rights Codes. There are over a million people with doctor diagnosed MCS in Canada, and so many more all around the world.

In the US, the latest prevalence study found that “among the population, 12.8% report medically diagnosed MCS and 25.9% report chemical sensitivity.”

The term ‘sensitivities’ seems to trivialize the condition in many people’s minds.

You may wonder what’s it really like then, if it’s not trivial?

Here’s how Laura J Mac describes it:

Having MCS means never knowing when you can manage something as simple as making toast.

• Can’t stand up due to pain.

• Can’t figure out all the steps involved to make toast. #execfun

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Four)

Part Four of Four

(Part One, Part Two, Part Three)

Guest post by Che Ray

 

If you are hosting the family in your own home, it is true, you must take every precaution.  Otherwise their stink will be there long after they leave.  If they come in with stuff and it gets on your furniture, it will be bad.

Here is a suggestion: let them know in advance that before they enter the house they will have to be willing to have you test whether they are wearing anything that is triggering for you. Then when they arrive, if you have a good friend who gets what you are dealing with, have them first go to the cars of the people who are coming. He or she can do a preliminary test. If she senses something she can be the one to tell them what the problem is.

If you have sent them detailed emails in advance of everything they need to eliminate (she can even bring the check list to the car) then this will come as no surprise. They won’t be mad at you, they will feel bad. And that’s OK. That is the part of the learning process on their end.

If they make it to the front porch, you go outside and test again.  When you first greet them, I suggest having your mask on.  It will let them know right away what the situation is.  Take it off briefly to assess the situation.  If you feel comfortable taking it off at some point later in the evening, you can simply say, I am going to do a test to see how I do.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Three)

Part Three of Four

(Part One and Part Two)

Guest post by Che Ray

 

Here are some things I would recommend: even when it’s a stuck in bed day…

I: Don’t try to do too much physically. Definitely let your body rest, but also do something active to restore your mind like listen to a meditation talk or guided meditation. Tarabrach.com or jonathanfoust.com are great!  I recommend them highly.  This will help you get restorative rest, which is a much deeper, more relaxing experience.

II: I only recently discovered an online language tutorial called Mango. It’s free if you have a public library card. It is an awesome interactive language learning app. It has everything from Spanish to Swahili, to Pirate (really, it’s super fun and funny!) to Yiddish; dozens of languages.

I have a brain injury from the toxic exposures but have not been able to get the kind of occupational therapy I need which has been depressing. One day I thought, what can I do to keep my mind stimulated?  And I came across this. Even if you don’t want to dedicate yourself to learning a new language, 10 minutes of mimicking Pirate language is going to make you laugh and feel better. And it’s good for your brain.

 

III.  You are a superhero.

Recruit other people in your life to join your fight.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Two)

Part Two of Four

(link to Part One)

Guest post by Che Ray

 

Overarching rule of thumb:

Talk about MCS/EI/TE/TILT like you are talking about cigarette smoking or HIV exposure.  What I mean by this is:

A: It is a given fact that second hand cigarette smoking causes disease.

We didn’t know this for a long time because the tobacco industry didn’t want us to know. So people had to put up with cigarette smoke in their face. Now it is not only not tolerated, it’s illegal to smoke in many places.

Explain to people that the elements in cigarettes that really kill people are often the exact same chemicals used in fragranced products.

I also say this condition is like smoking and HIV in that these diseases, more than others, DEPEND on other people caring about the health of people (like us) as much as they care about themselves.

 

B:  We have NOTHING to apologize for, so DON’T DO IT.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot

Part One of Four

Guest post by Che Ray


For those of us with EI (environmental illnesses), the holidays are especially brutal.  What were once happy times surrounded by family and friends become increasingly isolating experiences.  Depending on how bad off we are with things like fragrance sensitivity (which, next to fruit cake is the worst part about inviting Aunt Betty) or severe fatigue (where you just want to curl up into a ball under the dinner table), more and more we are faced with having to choose between trying to brave a family gathering only to end up sick in bed for weeks or convincing ourselves we will just stay home and write that novel.

In response to a heart-felt plea for help from one newly aware Canary who was torn between wanting to accommodate her family and fear of going overboard and getting sick, I wanted to reach out to her and give her some advice I wish someone had told me.  This is more or less what I said:

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