Re: Wool Jacket Reaction

[Guest guest]

Hello...I hesitate to offer my feedback and certainly am not in a position to

offer either lifestyle or medical advice.  I'm a  " newcomer " to this

illness/challenge compared to many of you who have battled these symptoms and

reactions for years.  However, I am blessed to have a doctor who points me in

directions that allow me to alter what I can alter in my environment.   Since

first becoming aware that my previously diagnosed illnesses of heart failure,

emphysema, and immune system failure were due to repeated high exposures to

mold/toxins, I have been hyperalert to possible additional molds and chemicals

that pose a threat to my health.  I learned that my heart

failure/emphysema/immune system failures were caused, not by a body that was

failing me, but by a body attempting bravely to save me from mold and toxins in

my office at work.  However, like many of you, those symptoms no longer

disappeared on the weekends or the summer vacations from my job in the school

system.  It seemed that eventually I just go so sick, I never had any relief

from the symptoms.  I had escaped the mold, but I was still sick.  As I

understand it, this eventual inability to " bounce back " becomes part of the

eventual diagnosis.  As it is, I haven't been able to work for over six months

now.  My symptoms no longer remained targeted to my lungs and my

body's increasing difficulty with exertion; it seemed that my body now began to

view the world at large as its enemy, not just mold and VOCs. My immune system

generalized its responses, now seeming to react to unknown, mysterious

poisons.  

Whoosh! 

When I read about the issue with your wool jacket, it reminded me of a reaction

I had.  I hadn't yet seriously examined my diet or other causes for my symptoms,

as I never had before had even a hint of food allergies and really felt that if

I could avoid mold, I could heal.  Again, that may be the answer for some, and I

offer my experience only as a possible avenue for some.  Heartburn?  Didn't even

know what it felt like!  Before my exposure, I was one of the hardy few who

could eat anything and never get sick, even at the age of 55.  I wasn't worried

about germs or about preservatives; I was healthy and just needed to ensure that

mold and other airborne toxins stay away from me and my living/working

environments.  Soon, however, I was forced to broaden my target from the " usual

suspects. "   It seemed that my body continued to react, that I was gettting sick

even after removing mold/toxins/chemicals.  What was one day a " safe apartment "

seemed to be the very environment where I would get extremely ill the next

day.   day.  The researcher self in me that remained after grad school and its

focus on scientific method had to  admit that the current causative factor may

not be mold, at least not now; I haven't been able to work for six months and

have eliminated sources of mold in my environment.  Maybe I needed to look

beyond the mold or toxin?  One of my calves swelled to twice its size one day,

the vision in my left eye reduced to a blur.  I hadn't left my apartment; I

hadn't been exposed to anything other than what I had eaten or products I had

used. 

A phone consultation with my fabulous doctor encouraged me to review what I had

eaten or what I had been exposed to, even if it seemed normal and/or

routine.  c.  The only causation I could pinpoint as I discussed this, as well

as other reactions that were bizarre and seemingly not related to mold expsoure,

was to review what I had ingested prior to the " attacks. "   I began keeping a

diary of my symptoms and what I had eaten and/or done before any changes.  Many

of my worst reactions--once I had removed myself from the toxins at work and had

ensured that my home was free of mold--seemed to occur after eating foods I had

previously been able to eat without any problems at all or within minutes of

using  products like detergent and cleaners that had only the week posed no

problem whatsoever!  I had to revise what I had previously regarded as " the

enemy "  and had to consider the possibility of new, unpredictable reactions to

previously " non-toxic " ingredients of everyday life. One recent event may

illustrate this. I normally don't eat meat and for a long time, have avoided

fast food " joints. " However, I occasionally used to treat myself to my

all-time favorite treat of all time:  refried beans and bean burritos from a

well-known fast-food outlet.  I splurged one day about two months ago, feeling

overwhelmed after another grueling day of labs, testing, and the

eight-hour-round trip to visit my doctor. I was feeling sorry for myself and

decided I needed to be " good to myself. "   Aha!  I know!  I'll get a bean burrito

or two and some refried beans, complete with sour cream and watch a good movie. 

(I know, I know.  What an exciting evening, eh?)  Yum!  Within minutes, however,

of eating my goodies, I experienced chills and watery eyes yawning incessantly. 

I thought that I was just tired from the long day, not realizing that these can

be signs of food allergy.  Within 30 minutes, it felt as if my throat were

closing, my calves and hands had swelled beyond recognition, the chills

continued, I felt disoriented and walked as if I had had too much to

drink.  Reactions to a greater and lesser extent happened over the next few

weeks, and I wondered if I was dying of some undiagnosed disease that caused

these discreet, aberrent symptoms. Why was I still having symptoms that seemed

to be reactions, not just ongoing aspects of an illness due to

toxins?  Follow-up discussions with my doctor  revealed that many times, folks

who have been exposed begin to develop allergic reactions to foods and other

elements that have never before been a problem.  

So, I'm wondering with you, as you attempt to find the cultprit in your recent

reaction.  Did you have any different foods/seasonings when you went out to

breakfast?  Did the restaurant restroom have an air freshener?  I'm glad you

brought up the detergent.  I learned that I could not longer use detergents,

toothpaste, etc.--a whole list of products and labels which I have used--safely,

I thought--for decades.  This whole syndrome can create new reactions by our

bodies; again, I would never presume that all of us face the same challenges or

even suffer the same consequences.  We are as individual in our reactions as our

fingerprints, in my opinion.  I'm wondering, as I read your heartfelt and

familiar plea for help, as well as those of other SBS folks, if the reactions

and sensitivities are growing, and if you, like me, are experiencing this aspect

of our evolving struggle.  I have to say I wish I could just avoid mold and

toxins rather than having to evaluate my diet and other lifestyle ingredients. 

I miss my bean burritos!  I miss my Friday-night martinis!  However, I am

discovering that, even though I continue to suffer from the wide-ranging

symptoms of this inflammatory response disorder, I have managed to use dietary

restrictions to avoid some severe and painful allergic reactions I had

developed to food and other products!   

I began this challenge with a target and focus on eliminating my  " enemies " : 

mold and chemical toxins.  I haven't gone back into the office from which I

begged to be moved and which repeatedly caused exposures to mold and toxins,

creating a vulnerable, fragile body in what once housed a healthy, vibrant

athlete.  I haven't been able to work for over six months and cannot even think

about the future, as I don't know what it will bring.  However, I do know that I

have today, as filled with pain and fatigie as it is.  I now accept that my body

now regards previously benign parts of my life as " attackers " and sets in action

a series of serious, frightening immune responses.  I cannot afford to bemoan my

body's responses but do know that a diary of reactions/illnesses better helped

me determine the causes of illness.  Never a " detail " person before, I carefully

monitor my feelings of health and/or illness.  When do I start yawning for no

apparent reason?  When do I get chills or hot flashes?  Does my heart rate

increase after eating something?   I once blamed these reactions on hormones or

stress.  Now I know that they can be indications of possible food

allergy.  Bummer!  I can no longer eat gluten, preservatives of any kind, have a

celebratory martini, use my favorite mascara or shampoo, or bathe my dog in a

shampoo designed to reduce flea/ticks.  So many aspects of my life have had to

be revisited.  However, I agree with those who have shared that a

tunnel-visioned focus on mold and only mold allows us to overlook other threats

to our health that we can more quickly and effectively determine and then

modify. 

Again, I'm new here and in no way want anyone to think I'm telling you how to

live with this.  Living with the consequences of mold/toxic exposure presents

huge challenges, but it also has helped me to focus on what I can control and

let go of what I cannot control.   My support goes out to all who also live with

this far-reaching, frustrating syndrome. 

Good thoughts,

sally