Where are you located? As Susie said, do not give up! It is better to be trapped in the poverty of SSDI/SSI than have no money to eat.

There are also secondary problems caused by the MCS that many have been able to get SSI and SSDI. A friend of mine began having bizarre seizures because of MCS issues. She was simply not able to work. It took a while but she got SSI.

Another friend I know became so depressed because of all the issues surrounding it that she went on for depression.

It is humilating, they control your life, you never have enough—but you at least have a chance to get food you like for some of hte month. Homeless shelters serve poison and are full of chemicals everywhere.

Don’t give up- It is bad, yes, but it’s better than some other situations.

I’m so sorry that you are caught in this state of limbo. I’ve not given up on thinking that you will find help, though. I think you still have some avenues to explore, I know for sure that you need to have legal counsel take a look at your case and explore avenues of recourse. You have so many obvious physical signs of illness, I’m mystified as to how they can be dismissed. Usually the problem with MCS claims is that the symptoms can’t be seen or measured by normal testing protocol. I do hope legal counsel can help you resolve this denial of care.

You are always in my thoughts.

Aloha,
Susie

Ha – I am being denied treatment because the FDA and the AMA do not accept MCS as being valid. “There is no acceptable protocal for treatment” “Its not mainstream enough”- and the worst “Its all in your head”. Is all my doctors will now tell me.

This is after being treated for 4 years- Overnight, I no longer have asthma- and now I react to oders-
If I could smell I would be able to AVOID the fumes!

Since I lost my job, I am no longer trapped in the Worker’s Comp system- I thought this would be a good thing. Because too many of my exposures happened at work, and I have no claims, (because I lost my job) I may never be allowed to see anyone in Environmental Medicine because it is so entwined with Worker’s Comp-

All this happened because I started to ask to see a specialist- as in someone who has a clue what chemical sensitivity is. No one in Occupational Medicine knew what to do other than avoidance-

SSDI will not accept MCS as a dissability- If you do get it, you can’t have any savings or investments- you are trapped in poverty.

What we need is Upton Sinclare -the author of “The Jungle”. Without his work we would not have the FDA we have today.

The cover up of the dangers of chemical products is bigger than what the tabaco compaines got away with for years-

Who would have ever guessed that anti smoking laws would actually work?

“But a cure for MCS is most likely going to be elusive. After all, MCS is not a disease or allergy, it’s a reaction to low level poisoning from toxic chemicals. So the more practical course of action might be for the sufferer to find safe housing and employment, stay away from toxic friends and family, dump toxic clothing and replace with natural fabrics, eat organic foods, buy a HEPA air filter and vacuum, find a good water filter, move to a place with cleaner air. But how easy is that course of action for anyone let alone someone who is sick with depleted resources?”

…but the vital words were still too long..It is a complex issue, but necessary to discuss.

Another reason MCSers can be poor (or anyone disabled) is the political bias.

For instance, someone on SSI must remain poor to continue to receive Medicaid. So let’s say you want to try to save up money so you can go to a natural Dr. You are not allowed to have more than $2000 in your bank account. An NP may cost at least that much.

Same with the disabled on SSDI. Older people who have Medicare can work and make all they want. The disabled may only make up to $14,000 a year.

There are some categories of SSDI such as Adult Disabled Child who are not even allowed to marry!

So someone on SSDI and Medicare/Medicaid as an ADC cannot marry, cannot save money, cannot work………tell me how they are supposed to “live the American Dream,” or even get by? Let alone see a Dr that will actually help!

we are so accustomed to being part of a culture with a language; when we find ourselves outside that culture, we have to develop a new way of communicating, and sometimes it is painful–

uncovering the “secrets”, as it were–

I am one of the very blessed ones; my father was a scientist AND had MCS–

he helped me on my path–

Thank you–

nothing more really needs to be said–

Thanks for the info on the Environmental Health program at Women’s College Hospital. Here’s the link for anyone who would like to check out the program: http://www.womenscollegehospital.ca/programs/program76.html . I’m going to add it to The Canary Report’s Resource page.

Thanks again. Be well.

Thank you for putting this condition front and centre so succinctly and poignantly. You have hit the nail right on the head on all counts. I have had that all my life and there was no name for it until the past few years. When I was younger I was more resilient, but, at age 68, it’s not so easy. it is a most distressing situation to be in. I have had to fight to be on disability benefits and I struggle daily for a safe place to be. Accommodation is the most important element that remains elusive. Affordable safe housing is non-existent. I have had to move 4 times in 6 years which is stressful and exhausting to say the least.

For those who are afflicted with MCS and/or Fibromyalgia who are reading this, Women’s College Hospital in Toronto, Ontario, Canada has an Environmental Illness Evaluation program in place. One does need a referral from a doctor to participate and there is a lengthy detailed questionnaire to complete before getting an interview. This brings the condition to the fore front in the medical profession. Good news.

Great article written with care and empathy. Thanks.

Jhannote Thibo

I have been saying, only slightly jokingly, that I have been the proverbial canary for the last 20 plus years.

Have you seen Michael Moore’s movie Sicko? I’ll see if I can post the trailer. He makes the case so well: Everybody should have full access to health care and no one should have to worry about ending up in poverty because they are ill!