Daily GASP 03.01.13

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Demarle Silpat® silcone/fiberglass non-stick cooking sheet

Empirical evidence is what is needed to ‘prove’ the danger of anything. Empirical data is hard to come by when huge amounts of money are involved. It seems to clog up the common and good sense orifices of society.

I am writing this while setting in our dining area, just off the kitchen, typing this with a splitting headache, beginnings of fibromyalgia, congestion, growing nervousness and topical itching spreading across my upper torso and stomach.

I am MCS (mutliple chemical sensitive). I have been for nearly 12 years. Though I am nowhere as troubled by incursions as I once was, mainly due to NAET treatments and franky, isolating myself from exposures to chemicals.

My body has begun to stabilize; again able to buffer against chemical incursions so that, as long as my exposure is kept to within tolerable limits, I avoid serious setback. But my sensitivity is as intense as ever.

My wife recently purchased a Demarle cooking sheet, at an ‘At Home’ party sponsored by a friend. I had no idea what the party was about – other than a ‘cooking party’.  I was not attending the party, mostly because, due to the MCS, I must severely curtain my contact with groups and unknown environments.

As we pulled away, after picking my wife up from the ‘cooking-party’, my wife began telling me about the ‘wonderful’ product she had been introduced to and how ‘amazing’ it was for baking. I asked what it was made from: she said, spun fiberglass, coated with cooking-grade silicone. She then told me she had ordered a cooking sheet and a cake pan.

It was probably a good thing it was dark in the car. She couldn’t see the grimmace on my face.

I asked one question and did not ask another. Those who know any MCS family/relationship/person, understand the ‘tension’ that can rise when, ‘once again’ — the questions begin.

My question I asked,” Did you smell anything ‘non-food’; chemical; acrid?” She said no. My wife does not have near the sensitivity I do in sensing odors, but she is alert. So, I felt, ‘OK, this might not be a problem.’

The question I did NOT ask, “Did the host mention anything about ‘burn in’? I wish I had.

Had I asked that I would not be setting here with a growing sense of malaise washing over my growing headache and body pains.

She mentioned the ‘host’ said there were no VOC‘s. I am not a practicing scientiest, but have worked in several accompanying positions with many scientists, in a number of fields:chemistry and physics; engineering; applied sciences; natural sciences. I’ve also been long involved in the industrial and commercial end of business. One of the reasons why I eventually went MCS.

So I know a good deal about VOC’s, volatile organic compounds. These are what ‘off-gas‘ when a material is heated. This is a grave concern to the MCS person. And the first thing I thought of when this product came to my attention.  As I found out later, the only thing the company says about ‘VOCs’, is that they clain there are no VOC’s given off in the manufacturing of their products. Nothing is said about any ‘VOC off-gassing’ in the USE of their products.

I should have said, ‘No thank you. I don’t think this will work. It’s not worth the risk’. But I have to say this so often. This is a serous personal and social problem MCS people face.

We are to leave early in the morning for a weekend with friends and our son and his family: our only grandchildren. IF this is a ‘fragg’ – then I will be sick for the next 48 hours, at least. IF not, no worry; just a temporary ill-feeling; bummer of an evening, but juice for this article. But, I seriously doubt this is a mere ‘ill-feeling’. The pattern fits an all too familiar scenario.  IF it’s a really bad ‘fragg’, we won’t be going anywhere.

I began a search on the product Demarle shortly after the conditions began manifesting this evening. Yes, this is something I should have done the very moment I heard what my wife had ordered; but I did not. I get so sick and tired of being on ‘constant vigilance as a chemical-detective.  Again, a real problem for the fraternity of MCS sufferes. That won’t happen again.

I find the Demarle is a French company, started back in 1965, by A. Guy Demarle.  The product that he invented, has revolutionized the baking industry. No doubt it has been greatly responsible for our access to so many types of well-baked breads.  But of course, we really don’t need to eat as much ‘grain-product’ as we do .. but that is a whole other can-o-worms.

Suffice it to say, a company that has made such advancements in the cooking and baking industry; being quite responsible for many profit margins and incomes – is NOT going to just role over and cease – because they produce a product that is harmful to a few: though a growing few: people.  This is the nature of business.

In my research this evening I came across a blog post, on a blog called, GREEN YOUR WAY, with an artical titled, Is Silicone Bakeware Really Safe?. The article written by Katie, was posted November 7, 2011.

It was a resonably well written article and it tried to address the issue of the title.  But, the author eventually admitted she, in-the-end, wrote another x-number word article that didn’t say anything new on the topic: Is Silicone Bakeware Safe. There are a number of Internet links on this subject. Some are interesting. A few are worthy of reading. Most are rants and raves with nothing more than vitriol and not worth clicking on.  Still I found the article a useful piece.  For no other reason than to highlite the real problem.

Empirical data. 

If one cannot produce deep, repeated, authoritative empirical data that – in the minds of Government, Law, Commerce and the Boardroom – that the product in question is a proven problem, then ‘forgetaboutit’. Move on. Drop it. There is no problem. Case closed.

Empirical data is treated with the class of a diety.  Nothing can be valid unless there is acceptable – to the ‘knowing class’ – empirical, scientifically derived data. Nothing else is valid.  It may be of interest to discussion, but not in decision making.

That really does not sit well on my already very discombobulated nervous system.

Empirical evidence? No, I can’t say I have that. Not in any form an official science-official would accept.

But … A very bad – and growing, worsening headache; aching muscles and joints; burning/itching sensation and overall nervous condition that makes it really hard to concentrate and not make typing mistakes? Yes. I have a lot of that.

My wife began baking her ‘granola’ on that Silpat sheet at 8:15PM EST GMT -5. At 8:14PM EST GMT -5, I felt just fine. At 8:16PM EST, GMT -5, from inside the downstairs bathroom, with a strong exhaust fan running, I got a whiff of what I can best describe as a ‘thin line of an acrid hot-chemical smell’. I know the time, as I was looking at my phone at the moment. Before 8:20PM EST GMT -5, my headache began. Early signs of a fibro-attack began under a minute later. Then roughly 3 minutes later the itching and burning, wrapped in the nervousness, began.

At 8:27PM EST GMT -5, I walked into kitchen saying, ‘Turn on the fan!’ NO, I was not calm or nice. I was in pain. My wife had not even noticed the ‘thin line of an acrid hot-chemical smell’. I am not surprised. It was masked for her by the cooking granola smells. By the time she cleared the food off the sheet and took it out to the garage, 10 more minutes had passed. The entire house -for me- was inundated.

It’s 31F outside. I opened an upstairs window and turned a large fan to blow OUT. It ran for over 30 minutes. The house cooled down. But the smell? It persists. If I go outside, I will NOT be able to return.

It is now, 12:35PM EST GMT -5 and the physiological conditions persist and are elevating. This is not a good sign. Ten plus years of experiene tells me I am in the early stages of a ‘major Fragg’. The next 48-72 hours will be very painful.

Empirical data? Maybe not.

But I’d sure love to have a collection of those scientists who say this product is safe and free from any environmental dangers, stand in front of me right now. As I could provide them with a descent replication of Michael J. Fox, during the mid-years of his ‘Spin City’ TV show. Nervously moving about, near-uncontrollable… and have them tell me that it’s purely subjective and merely anectdotal.

Maybe if I puked on their shoes, they’d feel a bit less egotistical and truly ‘see’ that clinical evidence of my suffering, is actually quantifiable empirical data.

Then again, data is always subject to analysis.  But at least they’d have the stench of that puke to forget … wouldn’t they..?

YOSAKIME

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Daily Gasp 08.25.10

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Botanica & Inhalers: Usage, Safety and MCS attention

I am a member of an MCS Online Community called, MCS News Australia #1.  One of our members mentioned a couple of things in a post that I addressed and will repeat here.  These are important issues to anyone, even more important to the MCS sufferer, who has very little leeway when it comes to sensitivity … of any kind.

The comments and questions are related to these two topics:

  • 1) Eating botanica to inoculate against allergic reaction
  • 2) Use of inhalers

About ‘eating botanica‘ to essentially inoculate against reaction.

Well, if you’re not worried about seeing the sunrise the next day .. go for it.  However, if you enjoy living .. it would be ill advised to try it without seeking serious professional counseling.

Here in the States (USA), growing up in the country of what we call “Hoosierland” .. a colloquial and official state nickname for residents of the state of Indiana, we have our fair .. maybe ‘unfair’ .. share of country (aka, ‘home’) remedies; not unlike many rural locations around the globe.  And like those of our global neighbors, some are very good.  One however, which I have very personal experience with is not: eating poison-ivy.

Growing up in the country, as a kid, I lived in the woods, along the streams and in the fields- daily; all day long. My encounters with poison-ivy were hourly.  I never was overly allergic, but I got it; and sometimes pretty bad!  But, hey, it’s only a minute fraction of the human population that do not react to the urushiol oils of Toxicodendron radicans, and it’s worldwide brotherhood of plants that make you itch!

Toxicodendron radicans, is but one of three plants in North America that produce urushiol.  The other two are poison-oak (Toxicodendron diversilobum) and poison-sumac (Toxicodendron vernix or Rhus vernix), each type is grades worse than the previous in the order they are named here.  And we have all of them in the Hoosierland.

The ‘home’ remedy was: eat some of the leaves of the plant, when they are blistered, and you will immunize yourself to the ‘itch’.  Well, part of that is 100% true.  You eat those leaves and you will become immune.  Cadavers have never been known to be bothered with itching from urushiol !   Great.  But I really don’t think the desired result is DEATH!  At least that wasn’t my intention.

Obviously because I am writing this .. it didn’t kill me, though I – my parents and the doctors – sure thought, for a time, it might!  I fortunately survived this stupid experiment.

In my case, this ‘experiment’ was conducted without any knowledge of my parents; I knew they’d say ‘NO WAY’.  But the local gent who told me about this ‘remedy’ assured me he’d done it and it worked for him.  I thought he was pretty cool – so why not give it try?  Ah, the logic of a 10 year old… how can you fight it?  Well, you don’t .. you incarcerate it!

When confronted by my dad, the ‘local purveyor of home remedy information’, said, “Hell no I didn’t try it!  That’d be nuts!” And when my dad told him that I DID try it … because of HIS advice, he again parlayed this bit of rich local ‘wisdom’;  “Hell, Jim, I’m really sorry, but I didn’t think your boy was that stupid.”

Two miracles occurred in that moment:  1) Ol’ Jake lived to see the next day and  2) Dad had to agree with the village idiot that he didn’t think I was that ‘stupid’ either.  But he did, however, give ‘Ol Jake a piece of his mind and some choice words about the ‘gullibility of a kid‘ to think on before leaving him.  Guess it took, Ol’ Jake never dispensed any home remedy advice to me – at least – ever again; I didn’t ask either… !

My little experiment turned out to not be a fatal lab failure, but it was not without a real string of ‘side-effects’.  So, let it be known … unless there is any doubt among our audience… side-affects are NOT limited to drug company pharmaceuticals. Any ingestion of a compound used to ‘treat’ …whatever! … has side-effects.  Some are just far more noticeable than others.  “. o

The main ‘side-affect’ was the event actually increased my sensitivity to urushiol – fortunately not permanent – but for the next 5-7 years, my outdoors time was a very nervous experience. One could say I had a ‘decreased level in ‘quality of life’; at my own hands.  Secondarily I had some really nasty scaring on my face – from the blistering. Time and a beard have concealed most of this evidenturium stupidae (to coin a wee bit o’ Latinesque lingo).  And as well, inside my throat – though I’ve not endoscoped that area – and have not had such a procedure (on that end!) yet – I have little doubt there would be, at least trace of, scar tissue in my throat as well, because there were blisters all the way into my lungs!   That is the real danger; pneumonia and anaphylaxis.

So, I would strongly advise you get serious professional assistance before trying any ‘botanica inoculation’ efforts.

USE OF INHALERS

I agree with the comments previously made:  1) be cautious  2) make sure the the inhaler is CFC and petro-chem free  and  3) use sparingly.  I will – however – add two more cautions: CONTAINER and ENVIRONMENT.

1: CONTAINER

  • a) Plastic? Be sure the plastic is medical / pharmaceutical grade and NOT a petro-chem derivative; and if so, free of PVC and other toxic petroleum-based plastics; this includes the point-of-contact; where you put your mouth or stick up your nose!
  • NOTE: In the States our FDA (Food and Drug Administration) has just introduced some very tight regs on the use of plastics in medical supplies.  Other countries are not so careful.  In reality, even in the States, WE have worry. Business is business and if the company can cut costs they will do so. For the average human consumer that may not be a problem.  However the…

    MCS sufferer is NOT AVERAGE !!!


    Even WE sometimes forget this.
  • b) Metal? Aluminum is the most common form of metal used in inhalers.  Again, for most people, this is not an immediate problem (no one should use bare aluminum to eat from, drink from or take medication from over long periods) .. but MCS sufferers are far more likely to react negatively to the effects of aluminum.
  • NOTE: The most reaction free materials that could be used would be glass or ceramic.  Both are 100% inert and do not pass on negative materials to the MCS user.  It would be nice if such materials were made in refillable containers for those of us who are sensitive to the more ‘commonly used’ materials.  Hard to get this kind of attention in a mass-production society.

2:  ENVIRONMENT

I list this last, but it should be the #1 thing we think of when using ANY INGESTED MEDICATION.
Ingestion occurs in 4 ways:

  • Skin (cutaneous)
  • Mouth (oral)
  • Eyes (ocular)
  • Nose (nasal)

Ingestion is NOT ONLY about eating.. it’s a manner of ‘taking in’.

So, when you use that INHALER or NASAL SPRAY … think of this … and be cautious:

As you INGEST in ONE of the 4 methods – the other three are also ingesting whatever is in the local environment. Thus making your body and ‘mixing-bowl’ of chemicals.

To avoid potential the potential contamination of your medication moment:

Medicate -when possible- in a controlled environment

  • no wind
  • no fragrances
  • no pollution
  • no chemicals
  • no sun

If such an environment is not available …

  • close eyes while ingesting
  • hold nose if doing an inhaler
  • close mouth if using a nasal shot
  • cover as much exposed skin as possible
  • limit sun exposure; ingest in shaded area
  • if you use a ‘mask’ – reposition IMMEDIATELY following an ingestion dose

Basically, what you are doing in these steps is attempting to eliminate ambient contaminants from being ‘mixed’ with the ingested medication for at least the first 30 seconds to a minute following ingestion.  If you can do so, you will allow your body to integrate with the medication on a more ‘level playing field’ than if you just ‘took your dose’ – without any concern for ambient environmental contaminants.

Now .. how many of you actually thought of this?  Seriously!  I would like to know.  Please comment here.  Your response will help me guide the level and depth of my comments.  Thank you.

Again, all people are affected in this manner. But the MCSer will suffer the slightest level of sensitivity infraction.

I hope this has been helpful.

Continue to read the YOSAKIME blog and follow me on Twitter for regular commentary, updates and … well, stuff like this.  “. )

Here’s the URL to the commentary on MCS News Australia #1 for which this piece was written.  Be advised you will need to be a member to read it.  The group is an open group and we invite all who either have MCS, are family, friends, employers, co-workers of MCS suffers to join the group to learn of the needs of the MCS community and how you can help.

YOSAKIME

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