MCS and Health Care Accessibility

I recently wrote this letter to a state representative who is working on health care accessibility for the chemically sensitive. I was surprised to hear of any politician who has this issue on their agenda, but it seems this one has a whole committee of like-minded people! We always think we are alone in our struggles. This gives me hope, but I know change is slow in coming...

I am writing on the lack of health care accessibility for people with Multiple Chemical Sensitivity (MCS). MCS is a medical condition where everyday chemical-based products create illness and often life-threatening side effects compromising health and negatively impacting quality of life. For MCS patients, health care is limited due to the lack of fragrance-free policies for staff and patients in medical facilities.

I was diagnosed with Multiple Chemical Sensitivity in 2002 after being poisoned at the school where I taught. Although the school was relatively new, only ten years old, the faulty ventilation system created a mold problem. My first day on the job the carpets were being replaced and the adhesives were being stripped with toxic chemicals. Everyone complained of the various smells in the building, however, it didn't bother me until they all began spraying the halls and classrooms with perfumes and air fresheners to camouflage the stink. When my health deteriorated beyond repair, I lost my teaching career, I was forced to move out of the city away from family and friends, I discontinued most recreational activities involving people, and I reinvented a new, isolated life away from the use of everyday chemical poisons.

Health care in general is a struggle. Most conventional medicine doctors who are dependent on chemical company pharmaceuticals don't recognize MSC and even if they do they are inadequately prepared or trained in knowing how to address it. Research is virtually nonexistent since chemical companies are in control of funding much of the time. When I first started showing signs of MCS, I went a local, well-known hospital with a department specializing in environmental medicine. The doctor whispered confidentially it was clear I was reacting to the air fresheners and perfumes on the job, but if he admitted this, the American Medical Association would "come down on him." After many years of experience I have found disclosing chemical sensitivity is met with patronizing skepticism and condescending sarcasm so I have learned if I want even substandard, partial treatment for any health condition, I must avoid mentioning any complications related to MCS.

Unfortunately, over the years I have mentioned my MCS diagnosis to not only environmental medicine specialists, but naturopaths and integrative or holistic doctors because they acknowledge the problem. The risk with disclosure is the information ends up in my records which are sometimes transferred to other, less knowledgeable doctors. I've been denied specialist care because of this information and I've had conventional doctors treat me with contempt and disrespect after they review my records. Some confess on the phone or in the office that is why I'm being denied. There are no patient protection laws. Doctors can deny treatment or care to anyone for whatever reason. I must constantly be vigilant with what I disclose to any doctor as it can compromise health care options that would otherwise be available to me.

Due to this AMA-controlled denial and skepticism, finding a health care facility that is fragrance-free or scent-free is challenging due to the copious use of perfumes, colognes, air fresheners, or essential oils by doctors, nurses, and staff members. My former optometrist now uses air fresheners due to a ventilation problem after an office remodel. A local dentist sprays his office down with air fresheners. The area chiropractor fills his office at Christmas time with fake floral arrangements and wreaths scented with chemicals. Another local doctor baths in body spray in attempt to hide his own bad body odor. I've even experienced naturopaths or acupuncturists who scent their offices with "natural" air fresheners, essential oils, incense, or scented candles. I cannot enter scented spaces without becoming incredibly ill. The Hippocratic Oath states health care professionals should do no harm. Using poisonous chemical-based scented products in these facilities is contradictory to the whole point of seeking medical care.

Unfortunately, in order to protect my health, I often must disclose my limitations by asking if the air quality of medical facilities are safe. I always call an office anonymously prior to making an appointment and ask if their doctors, nurses or office personnel wear fragrances or use air fresheners. Most do.  If I am told they don't, I cautiously and again anonymously visit before making the appointment unless travel time restricts a casual visit.  Most people don't understand basic questions regarding "scented products" or "fragrances" and have no comprehension of the vast products that are included in this category.  Others defiantly defend their personal habits. The staff at one local clinic does use perfumes and colognes and they have informed me they have no plan to discontinue this unhealthy practice. I was told by the physician's assistant in another facility she most certainly does use fragrances and I should find another clinic.

At even another doctor's office a receptionist told me they didn't use fragrances so I made an appointment and in excited anticipation waited a month to see the doctor. The afternoon before my appointment having not received a confirmation call I called the office myself. Determined to maintain my health knowing I must continuously protect myself from unexpected environmental changes, I asked again if fragrances or scented products were being used. The receptionist informed me, "Of course you can wear perfume! We all do." Shocked I replied, "But I was told your office didn't use fragrances." She became flustered, apologized for not understanding my question, and corrected herself. I sighed in relief and thanked her. This worried me greatly, but needing medical care I was desperate to believe it would work. Fifteen minutes later I was called back and told not to bother coming in because the doctor didn't think it would be a "good fit." I sat on the phone in silence, speechless. She repeated and asked if I understood they were cancelling my appointment at the last minute. According to their cancellation policy, I would be charged $50.00 for any appointment cancelled without a twenty-four hour notice. Unfortunately, their policy did not extend to their own cancellation without adequate warning.

The few health care facilities that do have a fragrance-free policy for staff rarely do they extend this policy to patients as it would be bad for business. Money, not health care, is always the priority. If I choose to risk an exposure out of desperation, I must ask which day is the least busiest and must plan my appointment to be the first one of the day stressing and praying no stinkers will contaminate the air space. This time slot is popular so waiting for weeks for an appointment is a common occurrence. Still, this doesn't always work and if I must cancel due to an exposure in their office, a cancellation fee is always imposed. Having MCS is very expensive.

Even some medical facilities that do have comprehensive fragrance-free policies don't enforce them. I worked for a medical clinic who professed MCS knowledge and had a stated chemical-free policy, but behind the scenes they were spraying toxic mold killer in their plants on the weekends and some of their staff wore scented products to work. When patients displayed side effects from these exposures, the doctors and staff claimed ignorance and blamed the patient. Another medical office has a policy and posts warnings on their doors, however, they have products scented with essential oils in their office contaminating the air. (Essential oils, even those claiming to be natural or organic, are processed with chemicals and emit VOCs making them just as toxic as any other fragrance.) Written and posted policies that are not enforced are false advertising and dangerous to those of us who depend on these protections.

I've heard as many as eighteen percent of the population are seriously chemically sensitive requiring lifestyle alterations to avoid life-threatening complications. Around five percent are classified as disabled due to MCS. Thirty-three percent of the population have minor side effects to everyday poisons and experience headaches, sinus congestion, dizziness, or coughing that can be erroneously explained away as a cold. These statistics have increased in the sixteen years since I was diagnosed.

Those with Multiple Chemical Sensitivity are not the only patients who react badly to chemically-based scented products. People with asthma, COPD, or other respiratory problems are seriously impacted by fragrances. Patients with cancer, autoimmune diseases, headaches/migraines, or women who are pregnant can be very sensitive to scented products as well. Allowing these toxins in medical facilities is detrimental to everyone's health and negates the whole concept of health care.

These are just a handful of examples of how I personally I've been treated by health care professionals in the last sixteen years. I do recognize in the last five years it seems health care is more aware of MCS and more facilities are making a better effort toward safer air quality. This is a slow improvement, but a hopeful one. In addition, although I appreciate the effort of the Affordable Health Care Act in the ability to obtain reasonably priced health care insurance, I resent the requirement of insurance. What is the point of purchasing insurance if health care is not accessible? Although health care dialogue always seems to center on the insurance issue, the medical system as a whole is in dire need of major reform.

Thank you. If you have any questions regarding my experiences, I'd be happy to answer them.

  

These are just a few examples of what I have to deal with when I attempt to go to a doctor. I tried to keep it short, but failed miserably. I could write a whole book on the subject! 

May is MCS Awareness Month

And boy, am I aware! It's been one toxic month. You can tell how much exposure I've received by how many posts I write. LOL.

It started with the Species Procession with too many people, too much activity, and possibly too much stress. I don't remember perfume or laundry detergent, but often before my body is overloaded I don't always smell it before hand. It's a clandestine poisoning.

Painting with acrylic paints. I use a mask, gloves and glasses as well as protective clothing, and I've tried to be very diligent about keeping safe and yes, this paint isn't as smelly or toxic which is good. Still, every now and then I get a whiff of paint or primer. It's not a smart form of entertainment for sure, but I need a distraction. And I need protest signs. So far it's worth it, but I may need to rethink this.

My new [useless] doctor suggested I head to a shoe store that specializes in plantar fasciitis. They had plug-in air fresheners. Maybe they use them to counteract the stink of those plastic sandals they push on their customers? No, I'm not buying those ugly, synthetic, toxic sandals. Or maybe because they had two stinky dogs roaming the store. So incredibly unprofessional. If 15% of the population are chemically sensitive, these people are either really stupid or don't care about sales. And how many people hate dogs or are afraid of them? People irritate me to no end.

Then there were my Goodwill shopping excursions. I'm not sure what has come over me, but anytime I have some free time I head to Goodwill. I've never realized they have half off colored tags! I have a few things on my shopping list: a hat, umbrellas for protests (I plan to paint them so our protest signs will keep us dry!), overalls (for painting), and anything else I might NEED like a lime green evening gown. Unfortunately, Goodwill uses really toxic laundry detergent. All the stores are the same. Yeah, I bring clothing home and wash it six times, but until the stink is gone every time I lift it out of the washer, I breathe it.

And then there was the umbrella. Excellent umbrella. White with faint pastel pattern easy to paint over. Automatic opening. Not a fold up. HALF PRICE! I thought I hit the jackpot. As I'm standing in line I notice the umbrella still has the original tag. I read it. "Buy Sarah Jessica Parker's perfume and you will receive this umbrella for free." Blah. I don't think anything of it, in fact, I think I even stuck my nose in the fabric. Nothing. Until I get it in my car. Where did this headache come from and why do my lungs hurt and my head is spinning?? The umbrella is soaked in perfume! I returned it, but by that time the damage had been done. I believe this was the beginning of the downward spiral. A real perfume poisoning, not just laundry stink.

Drawing group stinkers. I wrote about them and our last meeting in a previous post. We meet only once every two weeks so there is a break. Most of our locations are outside. Two weeks ago we met at a stinker's home, but I refused to enter because of the air fresheners. I stayed outside and created landscapes. Still, I might have received a hit from air freshener residue or perfumed people I encountered when we gathered.

MCS presentation. There were lots of smelly tourists milling about during the MCS presentation. Whew.

Monsanto protest breathing too much laundry detergent stink.

Yesterday's yard/parking lot sale. OMG. I'm driving down the road prior to the Monsanto protest on a day when it seemed like everyone was having a yard sale and I see a sign. I get closer and it's in a parking lot with LOTS of stuff, not junky stuff, but good stuff. OK, this looked promising. I couldn't help myself. The Cancer Society is having a donation sale and one of their donors is a professional home decorator. She does staging for real estate agents and donates the older linens and pillows she no longer needs for her displays. I bought a beautiful partly silk, cotton backing duvet cover for $3.00! Never used, offgassed and never washed. No stink!

The color isn't great in this photo. It's a really pretty olive with lighter olive embroidery.

Then I saw the clothes! Nearly brand new cotton sweaters and a cashmere sweater! What? You want .25 cents for each? Really? I couldn't resist. Used sweaters that aren't mangled and obviously worn out are difficult to find. I also bought a coat that looked like it might make a good rain coat. Or a secret agent spy coat - it's black and light weight.

And a purse. And a purple pillow. I bought nearly a whole new wardrobe for nothing, unfortunately, the clothing had been washed in toxic detergent so there is a hidden cost. It's not such a good deal if you have to wash everything six times. Bam!!! Hit number 234 (?) for the month. I made the mistake of smelling each garment. This is bad, I know, but some smells aren't washable. Unfortunately the smells that are washable are toxic.  I had to hand wash the sweaters so that's hit number 235, 236, 237, 238, 239, 240....Bam! Bam! Bam! Bam! Bam! Bam! or until the first sweater was thoroughly decontaminated. I gave up on the others, put them in a sealed plastic bag, and ordered some of that EnviroKlenz. I'll write a post on it when it comes. Reviews are hit and miss, but Mrs. Washington says it works and she loves it so I'll give it a go.

Co-op employee drenched in stink. Brain fog, nausea, dizzy. I had to leave before getting all my groceries, but not before I complained. The employees there are supposed to be fragrance free.

EnviroKlenz experimentation. Blah. Too many whiffs and I was so sick to my stomach I could hardly stand. Not a good feeling. (See my review of EnviroKlenz.)

Not feeling so good. Easily exhausted. neck hurts like hell, joints a little achy. I just want to lay down and not move for a few weeks. Not as bad as it could be, but I notice I'm much more sensitive to smells now.  Time to slow down.

Yes, I am very aware! I am happy to say I'm not as reactive as I have been in the past, five or ten years ago. I'm assuming the steps I've taken to heal myself have helped. I can't even remember the last time I had an anaphylactic response, skin crawl, rage cycles or other more serious reactions. That is good. Due diligence has worked.

Out of the Cage

On May 20th I attended the Out of the Cage MCS presentation and rally at the Washington State Capitol in Olympia.

My activist friend received the email announcement above, sent it to me, and exclaimed, "Bring the MCS signs!" So we did bring signs, although it wasn't so much a rally as just a presentation. Yes, we are determined to rally every weekend even when there isn't one! LOL.

The presenter was Mrs. Washington International 2017, Angelique Ashton, who campaigned the beauty pageant with the MCS platform!

She is not chemically sensitive, but her husband is. I was amazed at her dedication and devotion when so many spouses hit the road when it gets too hard. We arrived a little early so she spoke to us privately while she set up her equipment and signage. Very sweet and knowledgeable. She live streamed her presentation on Facebook. Here is the link:

https://www.facebook.com/angelique.ashton.3/videos/10154830298554132/ 

(I can't seem to get this link to link which is why I left the address. It could be because it's Facebook which doesn't always like to share outside its own site, but I don't know. Sorry. I'll try to fix this later.)

Only about nine people showed, but it was a fluke I heard about this so I think getting the word out is difficult. Also, the venue might have been a little too public for most and the unenlightened ignored the signs Mrs. Washington had posted requesting a fragrance-free zone. Anyone with severe chemical sensitivity would have been smart not to attend.  As we sat there, heavily perfumed women wearing dangerously high heels and incredibly high hair were modeling for their boyfriends' cameras and loads of school children were running up and down the capitol steps so the venue was a little risky. One masked woman had to leave early, unfortunately, as I would have liked to have connected with her. Mrs. Washington's mission is to spread the word and she intends to meet with state representatives later in the month to speak to them on behalf of the MCS population so the venue selection was strategic. Her audience is the unenlightened. We were just there for support.

I have to say she blew my theory that the flamboyant are the stinkiest. You'd think a beauty queen would stink to high heaven. Not this one! Hooray! Mrs. Washington's website is http://thenakedproject.org

At the close of her presentation she suggested if people have time to join the anti-Monsanto march happening at 2:00pm across the lawn! We can't refuse a good protest.

Multiple Chemical Sensitivity: A Survival Guide

Multiple Chemical Sensitivity: A Survival Guide is a manual for MCS by Pamela Reed Gibson. I remember many years ago when I first became chemically sensitive participating in surveys for this author's research. The copy I finally found is the second edition and was published in 2006.

It's incredibly complete covering everything from statistics, causes, food toxins, medical treatments, alternative therapies, identity loss, support options, and disability among other subjects detailing every aspect of one's affected life. The chapter on therapy is entitled, "If You Weren't Crazy Before You Got MCS, You Are Now." LOL!

The appendix, which is about as thick as the book, cites all her research statistics, This is fascinating and very detailed. Other parts of the appendix list helpful references including healthy options for products.

It's a must-have reference especially for newbies trying to figure out how to live with chemical sensitivity.

I Have TILT?

Or is it:

I am TILTed?

I feel TILTed?

TILTed I am?



I just read this great article on chemical sensitivity called Allergic to Life .  It was written a couple years ago but addresses gene mutations that might contribute to chemical sensitivity and brain scans that show evidence of physiological changes when exposed to poisons. I like that it indicates some progress is being made with research even if it's just this one person.

The researcher's ultimate goal is that doctors become more aware and educated so they understand how to identify those with chemical sensitivities and, therefore, provide better care. The article also addresses the naysayers who believe it's all mental which, of course, causes so much controversy it stops medical community acceptance right in its tracks. My cynical self thinks breaking through the narrow-mindedness is impossible.



And then there is the electric shock therapy some claim "cure" MCS. Whoa! I can't wait to sign up for some of that!

Of course, it's time for another terminology change. No longer Multiple Chemical Sensitivity, Environmental Illness, or Sick Building Syndrome,  it's now called "Toxicant-Induced Loss of Tolerance" or TILT. Like a pinball game? Hmmm...MCS survival is a bit of a game. Does this mean I have to change my blog name to TILT Survivor? Maybe "TILTed". I like that. It expresses how I feel most of the time.


If the abbreviated link above doesn't work at any point in time, here is the actual link:

http://discovermagazine.com/2013/nov/13-allergic-life

We Are Not Alone...

...that sounds like a blog post on aliens. How many of us felt like aliens when we first showed signs of chemical sensitivity?

I was reading a blog on allergies and someone posted that she/he started having chemical sensitivity symptoms in 1986. The doctor diagnosed it as stress and asthma. End of story. For years this person didn't know and just recently, this last week in fact, discovered the world of MCS. What an epiphany that must have been! It made me reminisce about my first experiences, my confusion, and my isolation.

I spent every Sunday of my youth in church surrounded by properly dressed elderly women bathed in a whole lot of stink. My reactions at that time were like hay fever symptoms: sinus congestion, watery eyes, heavy lungs, and some slight throat clearing or coughing. Oh well. I chalked it up to allergies. After all everyone knew perfumes were made from flowers, right? My dad reacted the same way and avoided church for that very reason. Consequently, we didn't use a lot of scented products at home. I do remember opting to buy older relatives fragrance gifts for lack of a better choice. I'm sure that was influenced by television commercials. What else does a grandmother want? They already have everything!

As a young adult I was given a tiny, beautiful bottle of Oscar de la Renta perfume. I'd wear it on my wrists, but only if I went some place fancy. I knew better than to wear it anywhere near my neck. Or nose. Hay fever symptoms are anything but attractive. As soon as I'd get home I'd wash it off, but rarely did I have problems with my own perfume or anyone else's. I also didn't bathe in it.

Years later as a teacher every now and then one of my teenage students would bring a bottle of cologne to school and proceed to throw it on other students. Yeah...junior high. Whadda ya gonna do? Many students had asthma and would complain immediately, even run out of the room. Total disruption. We'd all gag choking on the stink. I'd confiscate the bottle of perfume and send the little brat to the office. It took all my will power not to smack him across the head with a book.

I took pity on one kid, but I don't remember why. Instead of sending him to the office, I took the bottle away and told him he'd get it back when his parents came in to get it for him. He came back after school that same day and begged for the return of the bottle claiming it was his older brother's cologne and he would die a thousand deaths if his brother found out.

I said, "I guess you should get your parents to make that appointment right away!" He walked away scowling. I don't know why teenagers always thought I couldn't see through their bullshit.

The student eventually rotated out of my class at the end of the quarter. Months later I discovered the bottle in a drawer where I stashed it. I figured he wasn't coming back for it and threw it away. A week later, the last day of school, he shows up again begging for his cologne claiming his brother will kill him if he doesn't return it. I'm not sure why his brother hadn't notice it missing for the past six months?

At first I panicked remembering I threw it away and then I calmly said as I looked around him innocently, "OH! Are your parents here?"

LOL! He left and I never saw him again. His brother probably killed him. Over a bottle of cologne.

Sick of the antics of junior high students, I took a break from teaching and went to work for a large corporation in an office filled with perfume-drenched women. After a few days I became incredibly sick.

It must be the flu, I thought, The stress of a new job and all.

It would go away on the weekends when, I assumed, I was getting extra sleep, drinking lots of orange juice, and taking other steps to eradicate the virus. Monday it would return and I again assumed ignorantly I did something unhealthy to make it return. This went on for three weeks until I realized one Monday when every one of those ignorant bitches came in smelling freshly bathed in stink and instead of typical flu symptoms my lungs inconveniently stopped working. I was horrified. And scared. Was I going to have to quit my new job??

Even with this new-found realization, I thought it was just me. I was weird. It's MY allergy. No one else could possibly be so weird. No one else was going to understand. I mean, WHO is allergic to scents? Everything is scented these days. Maybe I could try some allergy medications? I assured myself it would go away and until then maybe I could avoid the stinkers. Being so anti-socially different and damaged isn't something that makes one feel proud. I didn't want to tell anyone. Maybe I can still survive and fly under the radar? They'll never notice me wheezing in the corner with an asthma attack. I didn't want to quit my new job.

For the next few years I changed jobs several times. I had all kinds of logical reasons for quitting each job so I could maintain some kind of professional demeanor and my resume wouldn't suffer, but the real reason was I couldn't tolerate the personal fragrances used by fellow employees. If I could just find a job without stinky people, I'd be fine.

Teaching. Teachers don't wear perfume. Why would they ever wear perfume? They aren't trying to be sexually attractive to...children! Are they? Eeeewww. This was right about the time Mary Kay Latourneau was caught with her twelve-year old student. I didn't remember teachers ever wearing perfume. Did Mary Kay? So many of the students had asthma. That last year teaching one of my students died from an asthma attack. It would be idiotic for a teacher to wear perfume. Even I know that! I thought I found my answer. Back to teaching! Back to safety!

Why would teachers wear perfume? It took me one more job filled with perfume/cologne-bathed teachers and a desperate desire to save myself before I started doing serious research on chemical sensitivity. It was only then did I realize I'm hardly alone with this! Thirty-four percent of the population has some level of reaction to fragrances, fifteen percent have had their lives drastically altered because of it, and five percent are diagnosed with MCS. These are statistics from fifteen years ago. More recent studies suggest the age group for the highest percentage for chemical sensitivity are those between 70 and 90 years of age. By the time the baby boomers get to be 70 - 90 I think we will see a huge increase in those percentages.

No, we are not alone....

Too bad we can't organize, harness our collective energy, and effect more change.


(Confession: I have NO idea how to draw an alien! Any ten-year old can draw an alien, but I don't have a clue. It's embarrassing....)

The Advantages of Being Chemically Sensitive

As MCSers we tend to focus on the negative: what we have to sacrifice to live in the world, how lousy we feel, and how it has changed our lives. Believe it or not there ARE advantages to being chemically sensitive!

Appreciation for Health  Think back ten or twenty years ago when you took your health for granted.  Moments, days or weeks when we feel good, it's definitely appreciated!

Hyper-Immunity I don't get sick because my immune system is overactive constantly battling chemical exposure. No colds, viruses, sore throats, flu. When everyone around me is feeling lousy, looking miserable, lying in bed, sipping chicken soup and wheezing through congestion telling me it's something that's going around, I can silently say to myself, Hooray MCS - it won't be coming around here.

Education on Health and Healthy Living Becoming chemically sensitive makes one search for answers in hopes of finding solutions. We study information on diet, environment, chemicals, medicine, health, home improvements, gardening, etc. etc. etc. We expand our knowledge on how to live healthy and how to heal. We are highly motivated to finding answers. Would I have taken the time to care so much about health and alternative medicine before I became chemically sensitive? Maybe, but I doubt it.

There are so many out there who still don't have a clue when it comes to the consequences of chemicals, Today, for example, I visited my local hardware store. As I waited, the person at the checkout counter next to me was naively buying Roundup. I had just posted my Save the Bees blog following it with the article on Roundup research and Monsanto revenge. I wanted to point and scream, OH GOD, DON'T YOU KNOW ABOUT THAT POISON? IT'S KILLING BEES! DON'T BUY IT! Would she have cared? I'm pretty sure she would have laughed. The whole store would have laughed and chalked me up as being deranged. 

People who wear perfumes, eat junk food, smoke, do drugs, dye their hair, use high-VOC paints, and kill things with pesticides, herbicides and fungicides are self-poisoning on a daily basis. I see these people and wonder how it will affect their health long term. Will they suffer from some related disease later in life? An autoimmune disease? Cancer? They might not care now, but they will regret their bad habits when their health starts deteriorating whining about what they wish they would have known.

Organic Food Movement Indoctrination  Same educational benefits. Learning about healthy eating requires understanding the difference between conventionally-poison-grown food and organically grown food. This also involves reading labels, appreciating local farmers, visiting farmers' markets, and expecting a higher level of quality, freshness and safety for all food.

Minimalism I can't buy junk made from cheap, toxic materials or chemically-saturated products. I can't shop freely. With shopping choices limited, I've been forced into the minimalist movement.  In learning to appreciate my situation, I make a conscious effort not buying material things that will end up at the dump someday, I am very picky about where I shop and support only those businesses that encourage sustainable practices, I buy quality merchandise rather than support a throw-away culture buying cheap junk, and I spend less money. I appreciate not being shackled to material objects or addicted to buying the latest gadget. I value my air space and have garage sales to get rid of stuff.

Environmental Awareness With the minimalist approach in my daily life, I have become more environmentally aware. The chemicals that are poisoning me are poisoning everyone else and the planet. I fix what is broken instead of casually throwing it away and replacing it. I think twice about what I buy and how it affects the water, air, and earth when it's used or after it's at the dump. My chemical sensitivity has made me more conscientious about ecology.

Return to Traditional Lifestyle With a new awareness on healthy living, organic food, and minimalism, this involves taking the time to make home-cooked meals from scratch instead of out of a pre-packaged box. I clean with products my great-great-grandmother probably used. I grow my own food when possible. Who would have thought I'd ever be a gardener?

Random Acts of Violence in Public Places  I'll never be sitting in a packed, midnight screening of any movie and have to worry about being shot to death by some lunatic. I'll never be on an airplane sitting shoulder to shoulder with smelly people as we fly into the side of a building. Granted, with all the crazy people in the world, being chemically sensitive doesn't immune me from other random acts of violence, but because I'm less likely to subject myself to crowds, I'm less likely to be a target for terrorist violence. What an insane world we live in.

Any other advantages I missed?

History of Perfume

Once upon a time, long, long ago, in a land far away, people used flower extracts, spices and herbs for perfume. Can you imagine? And they didn't even bathe back then. I swear I was born in the wrong century! Perfume used to be very expensive because it was difficult to make as it took time, skill and natural, quality ingredients.


The chemical boom started right around World War II and that's when everything went artificial, including perfume. I wouldn't be surprised if the deadly nerve gas developed during the war ended up as one of the ingredients in perfume. Perhaps the premise is if you can't attract a man with your fake stink, you can kill him as the alternative?

Toluene is in every perfume. It's also in furniture stripper, gasoline and explosives. It causes cancer along with a host of other health issues such as brain damage, memory loss, muscle control issues, numbness, tremors, headaches, and asthma. That's just one of at least 800 toxic chemicals used to make one perfume formula.

Perfume is still expensive, but chemicals are cheap. What consumers now pay for are the trade secrets (formulas) and the brand names.  What a rip. To protect these trade secrets, perfume manufacturers are totally unregulated by any government entity and are not required to list specific ingredients on labels. (Of course, that isn't to suggest any government entity regulates anything anyway!) This is excellent for sales because if people knew what they were putting on their bodies, they might decide it wasn't worth the health risk.  Someone once said wearing perfume is like covering yourself in paint...except you'd be a prettier color.

The use of the word fragrance is interesting to me. It's such a pretty word, but all it means on a label is a chemical that rearranges your brain cells so you think you are smelling a particular scent. When you see fragrance on a label, think toxic poison. Not so pretty now, is it? Also, stay away from any product with the ingredient "masking fragrance."  This is a chemical designed to shut off your brain so you can't smell it and it's used in many unscented products.


I read a study that discussed the horrors of chemical scents and how they affect our ability to make good choices when selecting a mate. We have been conditioned to believe our natural scents are repellent to others and it scares the hell out of us. Have you ever dated someone who's natural smell was so bad it made you gag? They would be classified as  "chemically incompatible" with you. The next person who comes along might think that person smells wonderful! This aspect of matchmaking is impossible to detect if one or both parties are bathed in artificial stink. Yet we are afraid someone might smell us so we cover  up our own scent with perfumes, colognes, and body washes. Unfortunately, if we can't properly smell the opposite sex, how do we select a compatible mate? Maybe this is why divorce rates are so high?  The study went on to say that perfumes don't attract the opposite sex and often disgust them. Scents that do attract are vanilla for women and cloves/cinnamon for men. Our ancestors knew what they were doing.


People are slowly starting to recognize the health ramifications of perfumes. Many businesses, schools and government offices are implementing fragrance-free policies. Even whole cities! Someday we will see fragrance bans in public places like we see smoking restrictions.  That will be a time of celebration.

Alternative Cleaning Products

Women are statistically more often afflicted with chemical sensitivity because of our traditional roles as house cleaners. Because of this social history, we have been and still are exposed to some of the most toxic chemicals on the planet. I, personally, would like a new role.



I'd rather be an heiress.

Laundry  I am laundry-impaired. Always have been. Unfortunately, unless I win the Lotto someday, doing laundry is a lifestyle requirement I haven't be able to ignore. I use Planet Ultra Dishwashing Liquid for soap. It bubbles too much so I am careful not to put too much in the washer. Planet laundry detergent makes me wheeze so it's OUT. 


Vinegar is added for germ killing and dye setting with dark clothes, and hydrogen peroxide for germ killing with light clothes.

Borax is used for really dirty stuff, but nothing that I have to wear or sleep on as it's too strong.

Every now and then I use bleach for whites. Because I dislike dull, dingy whites and laundresses needs to use bleach to get them bright, I have few whites in my life. To use bleach, I need to seal off the laundry room, open the windows and wash the load. Then wash it again without bleach two or three times more to get the stink out. (UPDATE: NEW DISCOVERY: Vinegar neutralizes bleach. During the rinse cycle, put on a mask, open the washing machine and dump in about 1/4 gallon of vinegar. Whites come out white without any bleach smell! Same if you inadvertently get bleach on your hands while adding it - wash them in vinegar.)  I've tried hydrogen peroxide for bleach - it's never worked for me, but again, I'm cursed when it comes to laundry skills so maybe it was just me.

I did recently discover ammonia. I guess you are supposed to use it for oils instead of bleach. Am I the only one that didn't know this? As long as I wear a mask, seal the room off, open the windows, I'm fine with ammonia and the smell is gone by the end of the rinse so unlike bleach, I don't have to do multiple washings.  (Ammonia is also used to excite a compost pile into faster composting.)

No dryers here. They damage clothes and waste electricity.

Buying anything new involves washing it multiple times before it's worn. Sheets or other bedding I must wash a minimum of ten times before I can go near them let alone sleep with them due to the formaldehyde and other chemicals manufacturers use to deter mildew in storage.  I opt for organic products whenever possible, but they are very expensive. Most bedding I get is from estate sales, brand new, still in the package, for $3 to $10. Hard to pass up. This is how I end up with whites or dark colors and need to figure out how to wash them safely.

I also avoid buying anything from China as products from China tend to be over treated with chemicals. I never buy synthetic fabrics which are made from petrochemicals. Just the feel of synthetics make me cringe and they always need fabric softener or fabric sheets to stop static electricity and that horrid cling. <shiver>  I stick with mostly cottons and wools, organic if I can find it.



The All-Purpose Miracle Soap

Oven Cleaner Planet Ultra Dishwashing Liquid, sometimes non-aluminum baking soda, always a pumice scouring stick that gets off any baked on gunk.

Car Planet Ultra Dishwashing Liquid. It's environmentally safe.



Toilets Planet Ultra Dishwashing Liquid and Borax. For a good scrubbing or  iron stain removal, I use a pumice scouring stick.


Baths and Showers Planet Ultra Dishwashing Liquid for bubble scrubbing, vinegar to kill any residue, germs and mildew. (Don't use vinegar on marble - it eats it.)


Windows Planet Ultra Dishwashing Liquid to scrub off dirt and grime, then hot water and a little bit of vinegar for rinsing. Wipe dry with a rag.

Dishes I use Planet Ultra Dishwashing Liquid for basic bubbly soap and aluminum-free baking soda or scouring pads for scrubbing.

Carpets I don't have toxic carpets, only wood and tile floors and cotton throw rugs. But on occasion I rent one of those carpet cleaners and do furniture or the carpeting inside my van. I use SafeChoice Carpet Shampoo which is chemical free and odorless. I bought two gallons of this stuff two years ago and I've only gone through a half a gallon so far. First, I rinse out the rental cleaner with vinegar and water. Then I add some shampoo, turn it on, and wash nothing as I flush out residue left from the chemical shampoo. When I think it's properly cleaned and rinsed, I add the SafeChoice shampoo like normal and shampoo. If I ever run out of this stuff, guess what I'll be using? Planet Ultra Dishwashing Liquid. :)

Floors Planet Ultra Dishwashing Liquid and peppermint oil with a bucket and a scrub brush. Then I rinse and polish with a towel. I can tolerate small doses of peppermint oil. I use it because spiders hate it and I hate spiders.

No spiders...

Deodorizers and Air Fresheners These products are so incredibly toxic I don't know how anyone tolerates them. Instead of chemicals, I boil some cinnamon or cloves in a pan and everything smells like cinnamon rolls. When I have spider-treated my house with peppermint oil, people say it smells wonderful, but I don't tolerate essential oils much so I avoid using them. Although essential oils are professed to be "natural", jacking up a smell five million times its natural scent is anything but natural. I also use non-aluminum baking soda in a bowl to suck up smells, vinegar in a bowl to rid a room of paint fumes, and freshly ground coffee beans for other, more serious offgassing issues.

Wood Polish I don't have a lot of bare wood in my house, but I have used olive oil and coconut oil on furniture and wooden things. I read that's what was used in history.

My personal stash....

I love Planet Ultra Dishwashing Liquid. It's the only soap-like product I can tolerate. I emailed the company and told them how much I loved it and they mailed me coupons. It is expensive, and will cost you anywhere from $3.99 to $4.15 a bottle. I wait until it's on sale at $2.99, buy a case, and get another 10% off the whole lot. I also use Planet to wash wounds and kill garden pests!

So...how many different products does one really need to clean?  If you eliminate Pinesol, Lysol, Windex, Tidy Bowl, Mr. Clean, Easy Off, Shout, Comet, Dawn, Pledge, Ajax, Downy, Fabreze, Glade, Renuzit, Bounce, and Tide (I can't even do unscented Tide - it stinks!),  how much poisonous exposure would you avoid per day? How much money would you save? Probably enough to splurge for some organic food!

Testing, Testing, 1, 2, 3...Part Three: Tests to Avoid

Psychological testing - If you've read any of my other posts or have seen one or two (or five) conventional doctors, you know they think the chemically sensitive are mentally ill. I'll tell you about my one experience with a psychologist.

I was sent to her for an evaluation as I was about to participate in a vocational re-training program and they wanted to make sure I was mentally stable enough to work. If I wasn't, they didn't want to waste their time. OK, I'll jump some hoops. I made sure the program knew I needed a mental health physician who understood MCS and who's office was fragrance-free. Well, anyone can say they understand especially if someone is waving money in front of them, but I've learned few do and this one had no clue.

Eventually she wanted me to take a "personality test." It involved a little over four hundred questions with a yes/no bubble form answer sheet.  Hmmm...as a former teacher I was fairly fluent in deciphering testing bias so I agreed to take it home and have a look. Many of the questions were definitely biased against chemically sensitive patients. For instance, "When you walk into a room filled with strangers, do you feel uncomfortable?"  This isn't an essay test where you would be able to qualify and quantify your response. Yes or no. Black or white. If I answer "no", that would be a lie. If I answered "yes", I'd be classified as paranoid because a "normal" person should be able to walk into a room without feeling automatically nervous. I don't get to explain my "yes" answer:

"Yes, but there is a good chance one of those people will be wearing perfume, scented lotions, scented hair products, scented deodorants...."

"Yes, but there is a chance there are air fresheners in the room."

"Yes, but there is a chance the carpets in the room were cleaned with scented soaps this morning."

So I counted up the biased questions (so glad I had testing assessment training as a teacher!), took the test back to the psychologist and told her it had a 12% biased which would certainly skew her assessment of me and falsely label me as paranoid. I showed her the above question as an example.  I refused to take the test. She didn't like that.

My final psychological evaluation said I exhibited signs of paranoia BECAUSE I refused to take the test! HAHAHAHAHA Obviously, there was no winning with this doctor. I guess I'm really glad people [falsely] assumed to be paranoid can still work!

Stay away from psychological tests!

Testing, Testing, 1, 2, 3...Part 1: Allergy Tests

The first thing a health care provider will want to know about your health issues are your symptoms, but after symptoms they need proof. This is where testing for MCS is problematic because so many of our symptoms do not provide quantifiable, scientific evidence. Doctors love evidence because it keeps them from screwing up too badly and, therefore, keeps them from getting sued. And it's fun for them. Doctors are just grown-up science geeks getting to play with the big toys. Testing helps in diagnosing your condition, and subsequently, helps you to make educated decisions about your health care. A diagnosis may also lead to identifying a legal disability which may assist you with disability claims or accommodation requests. Testing may be expensive or inexpensive, valuable or useless, accurate or inaccurate.

I'm going to discuss several types of tests I've experienced and are specific to MCS patients. My experience is limited, however, so I hope others who have different histories or more information will contribute to the comments.

Let's start with allergy tests...

For the chemical sensitive patient, basic allergy testing will almost always be suggested. Although many of you have already heard perfume and other chemicals are not allergies, testing for the basics: food allergens, pollens, animal dander, dust mites, mold and dust, will be done so they may eliminate what you aren't allergic to. Yes, you have to pay money so doctors can figure out what you already know although some of the findings may surprise you. Here are some methods for allergy testing:

Prick tests, also called scratch or intradermal allergy tests This testing method involves using tiny needles to scratch allergens into your skin on either your forearm or your back and then you wait from ten to twenty minutes for a response. If you are allergic, you get a welt or hive at the location of the scratch. The size of the welt determines how severe your allergy is. It's rather painless, although can be uncomfortable with the accompanied itching and the results are immediate. I was tested for about twenty different allergens all up and down my arms and lived to tell about it. However, because of the multiple allergens tested at once this type of testing isn't always accurate compared to other allergy testing methods.

I was tested for "grass". The welt was three times the size of any other. It went away. A few days later I went to a concert and although my seat was on the perimeter of the auditorium near an open door, the air was thick with perfume. My whole wrist turned bright red and swelled up. Later I was told grass and perfume are related. I was never really clear on how they are related, but it was interesting to know.

With these prick tests, I had no reaction to mold or dust although the doctor was convinced this must be the issue. I couldn't possibly be allergic to perfume! They then switched to the injection allergy test, injecting both mold and dust into my arm, and told me my arm would become very uncomfortable. I thought, "Hmmm...they are very sure of themselves."  They came back twenty minutes later hoping to find me in misery which would confirm their assumptions, and instead, I sat reading a magazine forgetting I was supposed to be uncomfortable. I wanted very badly to say "I told you it's not mold or dust, IT'S PERFUME!"

Injection  allergy tests, or Provocative Neutralization testing  This testing method involves using a tiny needle and injecting a bit of allergen or toxin into your arm - the "provoking" part. You write down all side effects as they happen. Relying on the patient to be an objective secretary has never seemed very scientific to me, but so many of our symptoms are invisible and therefore, difficult to observe. I guess this is better than nothing. Then they shoot you up with an "antidote" or neutralization of the provocation. The needles are so tiny it doesn't hurt much. I was having the test done with a five year old who was dealing quite well. Allergens tested can be typical: food, pollen, animal dander, or atypical, any number of chemicals. Conventional doctors will tell you perfume is not an allergy so there are no tests for it. Walk out the door and go to an environmental medicine specialist - they have tests for everything.

In addition to mold and dust at another office, I also had injection testing done for perfume and plastics. I still can't believe a doctor bullied me into it although I do understand he wanted evidence, as did I. This method is not advisable to anyone who might have a life threatening  response or even an uncomfortable one. I was promised it was safe. There was an antidote after all. For some reason, whatever they shot into me didn't come with an antidote that worked. I had a bad reaction which I discuss in the post titled "The Weirdness Awards."  This method, however, seems to be very popular with environmental medicine specialists so they can subsequently prescribe immunotherapy allergy treatments. (I'll discuss treatments in a future post.) The upside of injection allergy testing is the results are immediate.

The downside, besides being invasive, is they are very expensive. When the doctor talked me into getting this done he said I could just have two tests done out of 350 or so. I asked the office receptionist the cost of two tests.  $12.00 for each test. So, $24.00? I can do that! She misquoted. She should have said $12.00 per injection including the antidote injections. It came to about $150.00. I should have asked for my money back on the antidote injections!

Blood labs  They take the blood OUT of you, mix in some toxins, and see what happens. Very safe, non-invasive, and most accurate. I've found adding things to my body whether oral or injected always causes problems. Taking body fluids out of me rarely causes reactions. This method is also preferred if you are taking any prescriptions that might interfere with allergy results, have skin problems, might have severe reactions, or babies and children who don't tolerate being poked at much. BUT it can be very expensive. I've heard a full panel of allergens is around $500.00 or more.

With any testing involving needles, there is a risk a person might be sensitive to nickel which is the metal used for making needles. If this is the case, the injection will cause an enormous amount of lingering pain.

Bioenergy tests  I have one word for this - FUN. A computer has every allergen/toxin in biofeedback measurements. Little pads are placed on your fingers or toes and then with wires you are hooked up to the computer. It can test you for nearly anything! I received about 30 pages of documentation from every kind of food known to woman-kind to twenty different kinds of molds to jet fuel number six. When jet fuel number six appeared as an issue, the technician asked if I had every worked around airplanes. Yeah! At an airport! It was uncanny how the readouts revealed my exposure history and at times the technician would formulate theories on how my sensitivities developed based on this history. The readout will also have numbers associated with every tested item so you know how severe the response and if it's safe, you should rotate it, or eliminate it from your life. You can also take in bottles of supplements, hair shampoo, etc. and have these things tested to see if these items are compatible with your bioenergy. Amazing. Fun! It is a little time consuming and it can get very expensive depending on how extensive you want to get. Also, it might not always be accurate depending on how experienced the technician is and does not hold up as verifiable scientific evidence with conventional doctors. Maybe not considered as valid as other testing methods, but highly entertaining.

Pulse tests  This testing is primarily for food allergies and can be done in the privacy of your home. The method involves determining your normal resting pulse in advance taken over a few days. Then eat the food to be tested and take your pulse at fifteen minutes and thirty minutes. If your pulse goes up during that time from the baseline resting pulse count, you have an allergy. Depending on how much it goes up determines how serious the allergy is. This is not advised with any foods that may cause severe reactions. You shouldn't be smoking or caffeinating for a few days prior to the test and don't eat the food you plan to test until the time of the test.

WARNING: Any kind of invasive testing in which the toxin is being put in your body should be done under the supervision of a professional who has the ability to save your life should you have a bad reaction. Still, even if you have a bad reaction they may not care and will let you walk out the door! The blood tests, bioenergy tests, and pulse tests are relatively harmless, although even they may be problematic to some.

These tests may only tell you to what allergen or toxin you might be reacting. They won't tell you WHY you are reacting to it, WHY at this time in your life or from WHERE the exposure is coming. And it's the WHYs and WHEREs that are often as important in eradicating the problem.

What allergy testing experiences have you had? Please share your experiences, especially if they are not included on my list.