Hello, Friends! An MCS poem for you:

           The Dinner Guest

She backed away, and backed away --

they thought she had so little to say.

Her swelling jaw froze into a smile,

face taut now, heating up all the while.

As thunder rose within her skull,
the lively host took her for dull --

unimaginative, slow on the draw

(her vision shaking, sinuses raw).

Electric pulse above her nose, 

throughout her body, head to toes,

left her shaky, feeling slurred

in motion, thought -- in every word. 

The floor swayed gently, like a ship

or a plane in a mildly turbulent dip.

All current was she, electrically charged

by unseen molecules redolent, at-large.

[P.S.  The "she" in the poem is me.   ~ Carolyn]     By Carolyn,  © 2012

Still "Indomitable"

I've really got to do some excavating.  I've got to dig her up.  The old "me" with the toned, thin, and totally immune body.  I'm painfully aware that nobody can see her.  Nobody knows her at all in my present world.  This is frustrating beyond words. 

While people often urge me to stop thinking of myself as so vulnerable to toxins (see my post of March 5th, 2012), the funny thing is, I never think of myself as "vulnerable!"  This may seem even funnier, but I think of myself as "indomitable."  And do you know something?  I'm not going to quit that habit.  I really need it. 

Let me translate.  I'm not speaking here of some kind of overblown vanity or frank conceit.  I'm speaking from the more innocent perspective of my previously well self.  I'm speaking from the perspective of many, many people who have never been blindsided by bodily reactions that go beyond the pale.  They feel well.  They can't imagine feeling poorly.  They've never had headaches, let alone agonizing ones.  They don't know what people mean when they say a room "stinks" of stale smoke odors.  They're more likely to say (as I used to say), "What odors?"

I used to think people were being "picky" or "prissy" when they so much as mentioned annoying odors.  

And yes, I am capable of turning this around and appreciating how people must see me these days.  Deep sigh.  Very deep.  As the saying goes, "I hear you."

But to recap -- I do not think of myself as "vulnerable."  I do, however, think of toxins embedded in common products as very, very harmful:   "Know thy enemy." 

And knowing my enemy does not make me a wimp.

There is a huge difference between recognizing the extent to which pervasive toxins are intrinsically harmful, and thinking of oneself as "intrinsically vulnerable!"

The mere fact that these toxins are now so commonplace makes their scope all the wider, their vast influence all the more insidious.  Their staggering power in numbers -- when they finally manage to penetrate our bodies' best defenses -- is therefore all the more formidable.

I think of toxins as toxins:  harmful to everyone -- not just to me.  Some of us, however, have run through our body's natural defenses sooner than others.  If some of us had long-term chemical exposures, the chemicals ran through our defenses for us.  The body is strong, but too many chemicals are way, way stronger.  If some of us had brief but large and intense chemical exposures, those chemicals, likewise, ran through our defenses for us.  If some of us were overdosed with antibiotics as a child (per the "old thinking"), the antibiotics ran through our defenses for us.  If some of us were subjected to severe, prolonged stress and/or frank trauma, those factors ran through our defenses for us.  (Cerebral nerve pathways, scientists are now finding, can be altered through psychological trauma.)  If both chemical exposures and severe stress/trauma befell some of us, all the more quickly did these things strip our defenses.  If, in such a case, we happened also to have received a preponderance of antibiotics as children . . . . .

It all adds up.  The more biologically insulting factors at play, the more quickly the body's admittedly generous defenses are stripped. 

None of this, however, implies an innate "frailty" of constitution or additional "vulnerability" on the part of our persons.  (Nor does it imply any kind of "morbid fear" or "hysteria.")  But then, what about genetics?  OK, let's grant genetics its place.  Despite the role of genetics, however, many people's genetic predisposition isn't "tipped in the negative direction" for quite a while, if ever.  Something external pushes them over that balance.  And the less toxins (and trauma) circulating around us, the better.

Toxic damage can happen to anybody.  It's always a rude and unthinkable surprise.  It stretches one's mind to the absolute limit.

Readers, I do appreciate this.  Never, for a second, do I forget it.  And I'm going to hang onto that core of myself which remembers gliding through life donning my favorite perfume and a smile, sailing into crowds with nary a care.

That, my friends, is me.  I'm going to keep believing in miracles.  Someday -- I don't know how -- maybe there really will be a way around this nightmare.  Just because we don't see it yet doesn't mean it's not there.

So, CHEERS!!!!

~ Carolyn

Looking Forward to Hearing from You!

Hello, Friends!

I'd just like to take a moment to urge you to contribute your own comments to my blog -- and your own thoughts in reference to the articles/research pieces I've linked to that are most relevant to you, personally.  You don't need to "sign in" first or type out any letter code.  And there is no one "favored" subtopic here.  I did, however, put HOMELESSNESS in capital letters, up top, because so many of us MCS sufferers have already faced, are presently facing, or might face in the future the actual or potential reality of homelessness.

Also, if you support my effort, via this blog, to increase public awareness of the growing scourge of MCS, I ask you, please, to join this blog as a "Follower."

It would be very interesting to know what your own primary MCS triggering substances are, and what your own experience has been in your attempts to explain your MCS to others.

I am no medical specialist -- just a layperson suffering and coping for years with MCS.  Neither my own words nor my links are meant to replace the diagnosis, philosophy, advice, diet, treatment, or prescribed medications of anyone's doctor(s).  Nor do my links imply that I agree with every single idea of every single author to whom I link.  I am simply following a "general" line of informational relevance in each link I choose.

I provide, here, links to the best pieces I can both locate and link to successfully on the Web.  I choose them according to my own personal experience and observation -- which in the end must be termed largely "anecdotal."   Still, I believe there is a distinct "logic" to our individual MCS anecdotes and to our predictable systemic reactions.  I hope to bring these predictable patterns to the attention of scientific minds who can concretely pursue the more detailed questions these patterns raise.  May these logical patterns of MCS reactivity reveal themselves in my own writing, in your comments/stories, and in the links I can manage to provide.

Also, I wish to state that part of my job, as I see it, is to provide "apologetics" backup for those who are having difficulty getting the MCS message across to others in their midst.  The word "apologetics" does not mean "an apology" but rather the effort to defend, logically, a premise or cause.  I am attempting, therefore, to provide the best "defense" for the reality of MCS that I can.  Your own ideas for the apologetics of "explaining MCS" are most welcome!

Hoping to hear from you soon!  Cheers!  

~ Carolyn

Scorching Injustice

"Just think positive," several people have advised me over the years, urging me to stop being "afraid" I'll get sick from synthetic fragrances in my midst.

"Afraid," they say, while standing before me with their fragrances or synthetic room deodorizers (including scented candles, even unlit) burning into my face, as the swelling in my nasal passages has already begun and I'm starting to feel the typical "tipsiness" that antagonizing chemicals bring on.  The inherent cruelty of this situation never escapes me.  I'm called upon to "prove myself" just as it's beginning to be hard to form logical sequences of thought -- and equally difficult, motorically, to shape the words that I desperately need in order to respond effectively.

While this is happening, such bearers of fragrance often debate with me politely regarding my tacitly presumed hysteria.  The debate can be as lengthy as a calm and gentle conversation which they seem to view as some kind of psychotherapy in action.  Or, it can be as brief as a casual laugh and a light comment -- both approaches conveying, in other words, that people describing systemic reactions to commonly used products can't be taken seriously.

All of which boils down to the fact that their nonessential personal preferences of scent and decor take clear and decisive priority over my health for the next few days.  They get to fill their rooms and surrounding upholstery with the cloying, persistent byproducts of synthetic room deodorizers (including synthetically scented candles), wear this or that brand of scented product as they approach me, then implicitly accuse me of some kind of destabilizing mental excess when I suffer physically from these things or attempt to avoid them.  I, in turn, get to sit or recline, immobilized and useless, overtaken by massive head pain plus visual and motor disturbances -- for the next few days.  Then, the next time I come into these people's midst, they will vaguely recall, "Oh, yes, you're very sensitive to fragrances, aren't you?" as they approach me (or as necessity forces me to enter their synthetically scented rooms), and the whole demoralizing and health-injuring routine begins all over again.

As though I'd said absolutely nothing.

"Afraid" . . . . .  Are pollen-allergy sufferers afraid of pollen?  Is that why their eyes stream with tears?  Moreover, can't one be "forgiven" (for lack of a better word) for having come to know, in advance, what one's own body definitively reacts to -- and for hoping to avoid a recurrence of this particular reaction?  Natural-allergy sufferers are forgiven for this all the time -- no questions asked.

As for "thinking positive," I already am.  Like the Man of La Mancha, I intend to keep dreaming that "Impossible Dream:"  My dream that others will realize that MCS is a real, medical problem.  Which, by the way, is the very reason I'm writing this blog.

Those who wish to call me "afraid" of chemical antagonists -- or who prefer to think of me as "hypochondriacal" regarding the real systemic reactions my body undergoes -- may certainly persist in this to their heart's content; but then, if there's any consistency at all to their thinking, they're going to have to think twice before they (or others they know) take medication for their seasonal allergies or avoid staying outside in certain weather.  After all, shouldn't they just try to "think positive" first?  Shouldn't they make absolutely sure that they're not simply "afraid" of flowers, weeds, or the great outdoors, itself?  Perhaps they've convinced their bodies to form antibodies to these natural substances . . . . . just as they wonder (aloud, in my presence) if my mind has possibly convinced my body to react with migraines and motor disturbances to unnatural, toxic chemicals.

And, for the record -- I do not really believe that "natural allergy" sufferers have brought their allergies on themselves (!), any more than I believe that a chemically sensitive person has brought on his own MCS.  I wrote the above paragraph to illustrate the skeptics' inconsistent stance toward "natural" allergies versus their stance toward systemic reactions to toxic chemicals.

The injustice of this inconsistency is scorching, and too many people's bodies are now feeling the burn.

I, for my part, am channeling that "burn" into a "burning" desire to educate others -- as thoroughly and quickly as possible -- about the reality of MCS.

It's truly the most positive earthly action I can take to address this crisis before I sputter and burn out completely.

Please read this eye-opening link from the Massachusetts Nurses Association detailing fragrance-free information and policies:

http://www.massnurses.org/health-and-safety/articles/chemical-exposures/p/openItem/1346. 

This link itemizes nicely and concisely the systemic effects caused by the chemicals in many personal, deodorizing, and cleaning products.

Cheers!

~ Carolyn

My Nutritional Recourse During and After a Reaction to Chemicals

Feeling unusually "clear" today, I'm about to sail into the sunset of an activity bursting with scented clothing and perfumes.

Before I head off, I wanted to make a note about some methods I used this past week to recover from a severe bout of MCS . . . and then to regain my energy, which sunk once again to an abysmal low.

I took to grating cloves of garlic on my trusty cheese grater.  I sprinkle this fragmented mixture on my vegetables, salads, etc.  This does wonders for detoxification after contamination and for energy rebuilding.  But first, in the throes of a dreadful reaction, I had to use liquids as my "food" because the back of my head swelled up internally, making jaw and facial movements nearly impossible.  Swallowing, too, was labored.  The more I drank liquids with the additions noted, below, the more the reaction lessened to the point that I could actually chew food.

Highly recommended is apple cider vinegar, from one tablespoon on up (to tolerance), added to water or seltzer with generous spritzes of (real) lemon juice and a tablespoon or so of raw, unfiltered honey.

Dandelion tea with spritzes of (real) lemon helped, also, along with adding raw, cut onions to my food when I was finally able to chew.

Green tea is anti-inflammatory and was a steppingstone to imbibing the other liquids.

I drank, drank, drank, said fluids (to tolerance) accompanied, when finally possible, with the food additions suggested above.

This is very cut-and-dry reporting, but I'm supposed to be getting ready now and I didn't want to neglect some potentially helpful suggestions for those facing a new weekend of socializing and, therefore, chemicals.

Cheers!

~ Carolyn

Standing in the Doorway of the Laundromat

Laundry products.  They used to smell so good!

Today, the strongest laundry scents smell like some kind of vitriolic pepper spray to me -- invisible firecrackers of scent popping wildly in all directions upon even the most subtle movement of a clothed body, emitting a biting, burning sensation to my nose, and affecting me like a blow to the head.  I contrast this to the old days, when I would hold freshly washed cottons to my face and sniff!  I remember the gentle, powdery, motherly scent.  How I luxuriated in the world of smells I adored!

Ironically, I had to visit Paris to find the USA fragrances of my memory.  Paris was where they'd stored those sweet and lovely, "benign" scents of my youth!  How could this be?

Ah, better laundry-toxin regulations in Europe, that's how!

In France, I didn't have to shut the car doors and windows and seal the inner vents when parked in front of a laundromat.  In France, I could not only exit my car, but I could walk -- walk, I tell you! -- to the very doorway of the laundromat and chat with the people inside!  (I didn't venture in -- I was afraid the unbelievable experience would shatter.  I was profoundly happy not to have to duck for cover.)

I am aware of how positively ridiculous this may sound to those of you who have never had to flee from physically overpowering chemical scents.  But to those of you who know this routine:  I trust you'll understand the thrill I felt just standing there -- in the doorway of a laundromat.

Cheers!

~ Carolyn

MCS Denial

Good morning!

What discourages me most from writing are those intervening, demoralizing "down" days -- days spent recovering from an unavoidable exposure to the usual, so-called "harmless" chemicals on persons and clothing.  Although I cannot help the way my body feels at such times, those recovery days have become an embarrassment to me, a black mark on my efficiency, and, as the MCS-denying world sees it, a major strike against my credibility as a human being.

Being human and feeling massively outnumbered, I, too, start thinking this way, butting my head against the wall to "feel OK" in spite of the fact that my body is shouting at me:  "REST!  REST!"

I am pushing myself through that dread-filled embarrassment to write today.  Yesterday was spent in a stupor of exhaustion -- which I, in dutiful conformity with the MCS-denying population -- denied; and so I did not rest. 

I cannot tell you how many times I have capitulated to MCS denial.   Perhaps at some point in the development of this blog, this insane people-pleasing reflex will finally leave me to make way for the truth:  I did not cause the existence of these toxins that are slowly killing me, I did not choose to be disabled by them; and I cannot help it when my entire person feels their repugnant, systemically sickening effects.

Whoever out there is similarly afflicted, may we support each other with this very serious reminder.

If you have an MCS story to relate, please share it here!

And, cheers!

~ Carolyn

Hello, Again!

Hello, again, friends . . .

Has it really been that long?

My overall health took a wallop beginning in July -- during which time the bouts of chemical sensitivity felt all the worse.  Sadly, I was not able to dedicate the focused concentration necessary to maintain and grow this site.

But Spring is in the air early (!), and I take that as a hopeful sign that, perhaps, I can redirect my health back toward sunshine again and start digging up more useful links with which to educate the public about the hidden menace of chemical sensitization -- the blooming of reactions to many similarly-based chemicals in succession.

I begin again today.

Cheers!  Wishing you increased stamina and wellness,

~ Carolyn