Other kinds of disabilities

[Mariel]

The wheelchair and walker and cane type of disability is something we all understand. I have another disability which is almost as handicapping. This is that I am chemically sensitive.

My chemical sensitivity probably is because I have porphyria too. I am sensitive to many smells in buildings--new carpet, new cabinets (as in offices), carpet cleaner other than steam cleaning, floor sterilzers such as lysol, aldehydes used to sterilize dental tools, perfumes, formalin sprayed on new clothes, etc. And I am also sensitive to many drugs which most MS patients can take; I use magnesium and B1 instead of drugs to control myoclonus, for instance, and the mag was recommended by a neurologist about l9 years ago.

I can have difficulty breathing if I get Lidocaine, and some dentists will not bother to order Carbocaine or Marcaine for me...but of course the good dentists will order. I can do very well in surgery if I have proper anesthesia, and get vertigo and other problems with the wrong anesthetic. And so on ad infinitum. I am also sensitive in a lesser degree to flourescent lights--the wave lengths--and I know life will be difficult once all-flourescent is the rule, which I think is to happen by 20l0 or 20ll, I forget which. "Brave New World" is especially hard on those with unusual disabilities.

No one has ever as a "rule" or "law" been willing to cater to my sensitivities or to those of the many others who have this kind. That is, individual dentists or doctors or professionals of various kinds will vary what they do for me, but it is the minority. I can't go to the dentist anywhere in Los Alamos where I live, and have to travel 30 miles each way to a biological dentist who is better for me. I have been "thrown out" of various dental offices as too much to deal with, and have had doctors refuse to see me even if they were hematologists who should be the ones to care for porphyria. I have had excellent care and awful care, and I am not alone.

So, this is a disability too. I do not predict that anyone is going to pay attention to this on, on a nationwide basis, through law, such as they have for people in wheelchairs. Only kind and intelligent individuals will pay attention to my disability.

[fahrmar]

Mariel,
You describe a significant disability, in regards to your extreme reaction to chemicals of various kinds. I respond dramatically to a few chemicals, but nothing so severe as you.

Perhaps political lobbying is in order? Contact the various agencies/societies at your disposal for their leverage. You can petition your representatives. Obama is reviewing the ADA to reinforce it, strengthen it with funding and expand its scope. Write to him. Use your voice.

Peace.

[lady_express_44]

Just wanted to say "hi" and nice to see you, Mariel. :)

I know someone else with MCS, and she's having a hard time finding an active support forum for this condition. Have you run into one?

I bet a lot more people have this problem then they realize.

Cherie

[venice*]

Hi Mariel,

Since this is a relatively rare condition and those people that are only slightly affected or sensitive do not recogognize it for what it is; many consider these conditions inconceivable.

Unfortunately we are the 'canaries in the coal mines'.

My family and neighbors seemed to 'humor' me when they saw my new shower curtain liners 'airing out' for days on my deck. (The smell would make me sick.)

Yet as of last month news like this was relatively common:
The laboratory tests of five new PVC shower curtains, released Thursday, found 108 different volatile organic compounds were released into the air over a 28-day period, including off-gassing above the recommended level in the United States for seven days.

Considering conventional medicine is trained to specializes and treat symptoms rather than a cause- I've found it more productive to go with the flow when working with conventional medicine and doing research for my contribution to the 'medical team'.

[Mariel]

Cherie, my MCS support forums are porphyria forums, because all people with porphyria whom I've met online have chemical sensitivities. Some researchers think all MCS is porph-related, but others would not go that far. One place to start is Porphyria@yahoogroups.net. Or is that .com? My memory is shaky lately, and I forget the exact address even though I've been on this forum a long time.

Once upon a time there was a Porphyria forum on Braintalk but it got too angry and disintegrated; it's still here but no one goes there any more.

There is also an MCS group on Braintalk, which is probably very useful, but I don't go there because I get the complete discussion of MCS problems on Porphyria forums. We ALL have it, we think, although a few doctors (few) think it is not the same thing as Porph.

There is a magazine for the chemically sensitive called Our Toxic Times. It is not a support group as such but has interesting articles.

Venice, I have a non-toxic shower curtain from GIAM catalog. It was expensive but it's held up seven years.

[Mariel]

To Mary: Most of us with Chemical Sensitivities have been marginalized so many times that we do not expect any "official" agency to do much for us. Our Toxic Times IS a lobbying group, however, and it's worthwhile to support them with a small donation per year. Our Toxic Times often expresses discouragement, however, in getting any understanding of MCS by official groups. Doctors who work in this field sometimes find they, too, are marginalized. It's all I can do to stop workmen in New Mexico from wearing the ubiquitous perfume that men wear here, when they come to my house. If a workman comes in with that perfume, I have to stay many feet away from them or let my husband oversee the work, and leave the house. But there are more and more people recognizing that they are sensitive to common household chemicals such as Air Freshener. All Air Fresheners of the commercial variety are toxic--just more so to some of us than others; I cringe when they are advertised. What gov't agency will stop the advertisement of air fresheners on TV? Seems unlikely.

[Abby2006]

Hi Mariel

Abby

[pals1107]

I don't go near the "soap" isle in the store unless absolutely necessary, then I hold my breath and grab and run. Some perfumes can make my face and arms start to look like orange peel skin, red and bumpy, from just the smell. Same with air fresheners, so many different things. I have a full page of "see attached" when doctors ask for "any allergies".

Now that I think of it my psoriasis has gotten extreamly bad since stripping a wood floor, refinishing it and painting that room. It has been dormant for 10 years................since I got out of the office cleaning business. HUMMM more chemicals to clean toilets, sinks, mirrors, and stainless steel elevators. Connection..................I think so.

Pat

[gdmcor]

I have the same problem with breathing in certain chemicals, but I didn't know it had a name for it, other than "sensitivity". :)

My husband can't wear cologne in the house anymore, we only use natural cleaning products now, bleach is a no no, etc. I have developed eczema around my eyes and have other little patches of it elsewhere.

I have had allergies and itchy/red eyes for years, but only the last couple of years have I become extremely sensitive to chemicals.
Just another lovely problem :rolleyes: G Marie

[mmcc53]

Try washing the shower curtain in the washing machine in addition to airing it out.

[Abby2006]

I know they have places to rent now that are smoke free and after giving them up I hate the smell in nay way shape or form

Abby

[Mariel]

Hi, everyone. thanks for responding with your own tales of chemical sensitivity. Generally these things are referred to as "sensitivity" rather than "allergy". If you tell a doctor you have sensitivities he will know that you know what you are talking about: that a chemical sensitivity usually is not an allergy, which is apparently a different thing, a different type of bodily response.

[Abby2006]

I forget Mariel - do you have MS?

Abby

[Mariel]

Abby I have an MS dx, but it's way back there twenty years...my symptoms may be due to Porphyria, which causes a lot of symptoms like MS, but I do have brain scars on the l4 MRI's which were taken over the years. If I get off the Swank diet my MS symptoms become obvious.
So I don't know if I have it. One doc at UW a few years ago said I had MS rather than Porphyria (he didn't know) and another doc about the same time said my brain scars were not typical of MS (he didn't know either). So I"m in limbo except for one thing: I definitely have Essential Thrombocythema, another rare blood disease. I had an aunt and two second cousins dx'd with MS. I think there are a lot of unknown diagnoses, pro or con.

[0357]

Mariel,

Yes, I understand about sensitivities, etc. not being seen but turning our world upside down.

Take care.

[Mariel]

0357, yes, these turn our world upside down. You said it!

Mariel