Catch Up Mondays: Human Canaries & Friendship – revisited

I originally posted this on March 5, 2013.  This is a topic that comes up all to often among those of us with chemical sensitivity or chronic illness.  I decided it was time to share it once more on my Catch Up Mondays.

Today I was honored to be listed among some other very good bloggers on Ichigo Ichie in her post on Human Canaries and Friendship.  We all know that we are the canaries, the guinea pigs for finding what works/doesn’t work on our environmental illness and chemical sensitivities or other chronic invisible illnesses.  We also know what it is like to lose friendships during our struggles to make our world safe and in search of improving our health.  We also know how empowering it is to make new friendships with those who understand and will gladly lend a sympathic ear.  I am now following this blog too.

Dr. Rea once said that we are just the tip of the iceberg.  One day, we will be the ones that are empowered, the ones with the knowledge, and everyone else will be beating down our doors for information and sympathy.

Catch-Up Mondays: Sulfites and Drugs – revisited

This is part four of the four-part series of posts on sulfites.  The staggering number of drugs that contain sulfites as a preservative is unbelievable.  I am sure this list is not complete but it gives you a good awareness of how far reaching sulfite use is.

I know many of you out there might not use medications. But at some point in your life, there may not be an option in order to stay alive. I have discovered that there are medications that contain sulfites. I am sure this list is by no means complete as new drugs and variations of those drugs come on the market daily. Following is what I have learned about drugs and sulfites.

Bronchodilator solutions for asthma

• Adrenalin chloride 1:1000 concentration
• Bronkosol
• Isuprel hydrochloride solution

Topical eye drops

• Pred-Mild
• Pred-Forte
• Sulfacetamide
• Prednisol
• desamethasone

Injectable medications

• Amikacin
• Betamethasone phosphate (Celestone)
• Chloropromazine (Thorazine)
• Dexamethasone phosphate (Decadron)
• Dopamine
• Epinephrine (Adrenaline, Ana-Kit, Epi-Pen)
• Garamycin
• Gentamycin – I have taken this before and reacted.
• Isoetharine HCI
• Isoproterenol (injectable)
• Lidocaine with epinephrine (Xylocaine) When I needed this before, I had to get it preservative free.
• Meperidine (Demerol)
• Metarminol
• Norepinephrine (Levophed)
• Procaine (Novacaine)
• Prochloroperazine (Compazine)
• Promethazine (Phenergan)
• Solutions for total parenteral nutrition and dialysis
• Tobramycin

General Anesthesia Drugs

Sites I visited to get my sulfite information:

http://www.webmd.com/allergies/guide/sulfite-sensitivity

http://ww.sulfites.org/sulfite-foods

http://nutrition.about.com/od/recipesmenus/a/organic.htm

http://www.allergy-and-diabetic-health.com/sulfite-free-foods-no-way-out-to-survive-the-fight-goes-on.html

http://www.allergy-and-diabetic-health.com/sufites-in-bleached-sugar-beet-and-cane.html

http://www.wikihow.com/Live-With-an-Allergy-to-Sulfites

http://allergies.about.com/od/foodallergies/a/sulfites.htm

Catch-Up Mondays: Sulfites and Food – revisited

This is part three of my sulfite blog posts.  I shared this on February 2, 2013. When you start eliminating sulfites, the amount of foods that have them is unbelievable.  Of course without testing it is very difficult to know at what point you will react or how much is actually in the foodstuff.

Okay so this is part three of my story on sulfites. I hope you all are not tired of hearing about them yet. The list of foods is long. Somehow the lists I have found don’t seem to be as lengthy as what I remember. But then again, with my brain fog and the fact it was about thirty years ago it is hard to know for certain.

Before I start listing the foods I will respond to a question a friend of mine asked. She wanted to know if organic foods were safe from sulfites. From what I have read that they are not allowed in organic foods in the US. I also read that organic foods that travel over borders can be sprayed with sulfites or sit in a tub of sulfited water or ice to prevent browning.

Foods with naturally occurring sulfites are grapes (why even organic wine can contain a certain level of sulfites), onions, garlic, salmon, leeks, lettuce, chives and asparagus.

The FDA has broken down the foods with sulfites by category in their FDA Guide to Foods and Drugs with Sulfites.  The Sulfite levels have also been categorized by ppm (parts per million and shown in red) with greater than 100 ppm considered very high (strict avoidance), between 50 and 99.9 ppm considered moderate to high (avoidance advised in those with sulfite sensitivity), between 10 and 49.9 ppm considered low to moderate (may cause symptoms to those with severe sulfite allergy), and less than 10 ppm considered very low levels (generally do no pose a risk even to those with sulfite sensitivity).

Alcoholic Beverages (beer, cocktail mixes, wine, wine coolers) Wine is in the very high and beer is considered very low.

Baked Goods (cookies, crackers, mixes with dried fruits or vegetables, pizza crust, Quiche crust, flour tortillas) Low to moderate level.

Beverage Bases (dried citrus fruit mixes) Very high level.

Condiments and Relishes (horseradish, relishes, pickles, olives, salad dressing mixes and wine vinegar) Low to moderate with wine vinegar being in the moderate to high level.

Confections and Frostings (brown, raw, powdered or white sugar derived from sugar beets) Very low level.

Modified Dairy Products (filled milk – when vegetable oils are substituted for animal fat) Not available.

Fish and Shellfish (canned clams, fresh, frozen, canned or dried shrimp, frozen lobster , scallops and dried cod – my lobster experience was mentioned in my first post Low to moderate level.

Fresh Fruit  and Vegetables (potatoes) Very low level.

Gelatins, Puddings and Fillings (fruit fillings, flavored and unflavored gelatin, pectin) Very low level.

Grain Products and Pastas (cornstarch, modified food starch, spinach pasta, gravies, hominy, breadings, batters and noodle/rice mixes) Very low to moderate.

Jams and Jellies (because of the pectin) Very low.

Nuts and Nut Products (shredded coconut – although I have found unsulfured coconut) Very low.

Plant Protein Products (canned, bottled or frozen juices including lemon, lime grape and apple; dried fruit; canned, bottled or frozen dietetic fruit or fruit juices; maraschino cherries and glazed fruit) Moderate to very high level.

Processed Vegetables (vegetable juice, canned vegetables including potatoes, pickled vegetables including sauerkraut, dried vegetables, instant mashed potatoes, frozen potatoes and potato salad) Sauerkraut is in the very high level while the other items seem to fall in the low to high levels.

Snack Foods (dried fruit snacks, trail mixes, filled crackers) High to very high levels.

Soups and Soup Mixes (canned seafood soups, dried soup mixes) Low to moderate levels.

Sweet Sauces, Toppings (corn syrup, maple syrup, fruit toppings, and high-fructose corn syrup, pancake syrup) Very low to Moderate levels.

Tea (instant tea, liquid tea concentrates) Not available.

My last post on sulfites will discuss medications that may contain sulfites.  I will also provide links to some of the various sites I used when obtaining this information so that you may view them yourself in their entirety.

Catch-Up Mondays: Sulfites and Me, an Ugly Combination – revisited

 

This was first posted on January 31, 2013.  This post was the first of a four-part talk about sulfites.  I will be sharing the subsequent posts on the following Catch-Up Mondays.

I talked about sulfite sensitivity recently.  Years ago my husband and I would go to Happy Steak (a place to eat when you were on a budget back in the day).  We would order steak and the salad bar.  It never failed that within hours after eating at the restaurant I would develop horrible symptoms.  My throat would itch, my sinuses would get swollen and congested, and my chest would tighten up.  This was followed by a trip to the bathroom where I could barely sit on the toilet because of the intense feeling I was going to pass out and my body feeling hot.  As if this wasn’t enough, after taking an antihistamine, my nose would run nonstop (imagine a water faucet in your head being turned on to full).  Then I would be freezing cold and just let myself lie on the bathroom floor covered in a blanket or my robe because I didn’t have the energy to move or the desire to be too far from the bathroom.

I visited an allergist out-of-town and mentioned these bizarre symptoms to her and what usually preceded them (usually a trip to a salad bar somewhere).  Wow!  She immediately knew what the culprit was.  She said I had a severe sulfite sensitivity.  She then proceeded to tell me that sulfites where on most items in food bars (lettuce, potatoes, fruit).  I was given a list of what sulfites were, what foods they were in and what to avoid.  At the time, there was a medical facility in La Jolla, a southern California town, where sulfite sensitivity testing was done.  From what I remember of that conversation, I would have to stay there a minimum of a week.  I would be under constant supervision as they tested me by having me ingest sulfites to see the minimum amount that it would take to cause a reaction.  My husband and I talked this over.  Going there would give me a sense of how sensitive and severe my sulfite sensitivity would be.  The only problem was that it really wouldn’t help me in terms of which foods I should/should not avoid.  At the time, sulfites were not required to be disclosed on food labeling.  Rather than make the trip and go through the risk of testing myself, we decided that I would just give up everything on the list.  I am not sure exactly how I came upon a Sulfite Support Group (there were no computer groups back then) but I was able to get a more detailed list and a newsletter in support of dealing with sulfites.

Fast forward several years.  We were having a special dinner with friends in their home followed by cards.  The menu we planned was steak and lobster tail along with baked potatoes and some form of dessert.  We had chosen lobster because Costco was having a seafood special and we were going to buy fresh lobster.  My husband and I were given the task of making the trip to buy the lobster.  We arrived at Costco only to find that they didn’t have fresh lobster.  Our taste buds were crying out for lobster and determined not to leave without it, we browsed and purchased frozen lobster tails.   The evening in the home of our friends had been wonderful, good company and delicious, mouth-watering steak and lobster.  With dinner over, we settled down to cards.  In the midst of our cards, my asthma starting acting up.  I felt kind of flushed and out of sorts.  We left early barely making home when the stomach cramps and congestion kicked in.  I was dying.  Every part of my body was rebelling.  In an attempt to make sense of this I had my husband call to inquire about the lobster packaging.  After digging through the garbage our friends confirmed my fears, the lobster had been preserved in sulfites.

I learned then and there that I needed to be a better label reader.  If I wasn’t sure about a frozen item I needed to avoid it and contact the company and ask questions.  In my next post I will discuss more about what sulfites are, other names of sulfites and what foods contain sulfites.

Catch-Up Monday – EMF Sensitivity: Effects on My Life (as told by Jennie Sherwin) – revisited

This post was originally shared on January 27, 2013.  I am so thankful to Jennie for sharing this with all of you.

My dear friend Jennie Sherwin wrote about this topic on her blog (Jennie’s original blog no longer exists.) You can follow her here on her new blog. Jennie has given me permission to include the contents of her post here. Yesterday I wrote about EMF and my experience with it. I also discussed briefly on how it deeply affected the lives of some amazing women I have met on my healing journey. 

EMF Sensitivity: Effects on My Life and Its Transformation through Energy Balancing Treatments

I am a survivor. I recovered from multiple chemical sensitivity as well as from sensitivity to electromagnetic fields. Because I recovered, I shared my story in my book, Intentional Healing: One Woman’s Path to Higher Consciousness and Freedom from Environmental and Other Chronic Illnesses.  When I speak about my experience at book signings and author talks, audience members often ask: “How did you know you had EMF sensitivity?” In truth, I was sensitive to electromagnetic fields for some time before I knew what I was experiencing. I remember feeling nervous when I sat in our breakfast nook under track lighting. We had been living in that condominium in New Orleans for almost three years when the nervousness started. I can recall feeling a buzz around me when I stood close to the mirror over the vanity in the bathroom, which was lighted with bulbs that fit into receptacles above the mirror. It was not until I entered treatment at Dr. Rea’s clinic in Dallas that I fully “unmasked” for EMF sensitivity, and it happened in a dramatic way. Here is an excerpt from my book:

“…. On Sunday early evening, as I was checking e-mail on my laptop, Pretty Woman was playing on one of the cable TV channels, and dinner was baking in the oven. All of a sudden, as I was typing, I felt a strange sensation. My fingers felt prickly. The sensation spread into my hands and up my arms. The next thing I knew waves of pain exploded in my chest, and I started shaking. I felt as if I had my finger in an electrical outlet and waves of electricity were coursing through my body. Electricity! That was it! I shut off the television, the computer, the oven, and all of the overhead lights. I sat in the dark, shaking, wondering if I was experiencing electro-magnetic field (EMF) sensitivity. Remember Susi who couldn’t use a telephone? She was EMF-sensitive, and for that reason she could not touch or be near a telephone or other devices that emitted electromagnetic fields for very long. My third week at the clinic had ended, and I found myself much sicker than when I had arrived. I was incredulous. It has gotten worse. I looked at the telephone and took a deep breath. Will I be able to use the phone? Tomorrow morning, Roger would call me, and I would know.”

The next morning when my husband called, I was on the line only a minute or two when the drama of the previous day was repeated. When I got to the clinic later that morning, I was told I had “unmasked” (become aware of a sensitivity that had been hidden to my perception because of more dominant sensitivities) for EMF sensitivity as a result of the detoxification process. Life from that moment entered a twilight zone reality for me. I felt electricity from anything that emitted an electromagnetic field: telephones, appliances, air cleaners, lights, hair dryers, computers, cell phones, compressors, wires, and cables. I felt as if I were continually plugged into an electrical outlet, and I thought my nervous system would be damaged from the assault.

At the clinic I was referred to Deborah Singleton, founder and president of the Arasini Foundation and director of A Healing Place, and her healing team. With their guidance, I learned to quiet my energy fields, clear an EMF reaction, and maintain my personal energies in balance in order to heal. I attribute my ability to benefit fully from the treatment at the clinic and transform my perception of electromagnetic fields from illness to a tool I now use for information to the energy balancing treatments and the guidance I received at A Healing Place

How this transformation came about, as well as some of the exercises and practices I learned at A Healing Place, is outlined in my book (Allergic to Life:  My Battle for Survival, Courage, and Hope).

Catch-Up Mondays: DON’T TOUCH THAT BUTTON! – revisited

According to an article in the March 26, 2012 issue of “First for Women”, Dr. William Rea (director of the Environmental Health Center-Dallas) is quoted as saying women with multiple chemical sensitivity are at a greater risk of developing electromagnetic field (EMF) sensitivity. Dr. Rea believes that a reaction to chemicals can damage cell membranes, making women more vulnerable to the harmful effects of electrical signals from computers, TVs, Wi-Fi and cell phones.  Just the touch of the computer keypad can or the buttons on a cell phone can send someone into excruciating pain.

Electromagnetic Field Sensitivity (EMF) can present itself as headaches, muscle pain and fatigue. It can also cause a feeling as if one had stuck their finger in an electrical outlet. Some women have complained of feeling pain in their chest and buzzing in their heads. I can remember when my reactions were at their worst, I would get a shock wave sensation in my head. The shock wave would feel like electricity was being fed through my left ear, run right through my brain and exit the right ear. This shock wave sensation would go on for an extended period of time. As my reactions calmed somewhat, those sensations would lessen but return in the testing room if I was testing something especially difficult on me (chemicals, molds, mycotoxins).

I have experienced first hand what other women have gone through. My first true view of life with EMF was in 2002. I had only been in Dallas for a few days when a woman was walking around with a shirt tied around her head. How strange I thought. She didn’t speak much at first but we soon became friends. After talking with her, I soon discovered that she suffered from EMF. She explained it to me and said that she couldn’t have the television on in her condo and she couldn’t stand in front of the stove. Because I was able to do these things, she approached me one day to see if I would be willing to take her food and cook it for her on my stove or in my oven. She has greatly improved over the years and is now tolerating more than when we first met.

My second experience with EMF was with my friend Jennie Sherwin author of “Intentional Healing: One Woman’s Path to Higher Consciousness and Freedom from Environmental and other Chronic Illnesses”. I met Jennie in January of 2003 when I had returned to Dallas for surgery and further testing at the Environmental Health Center-Dallas with Dr. Rea. I remember walking into Jennie’s condos to the very dim glow of low watt bulbs. I remember what she had to do in order to just cook her food or answer the landline phone in her condo. I remember vividly Jennie’s husband taking her to the center and her climbing in the backseat of the car because all the controls on the dashboard would cause pain to course through to her heart. Jennie has experienced an amazing recovery and her book is a true inspiration. I will be posting tomorrow from Jennie’s blog regarding her experience with EMF. Jennie’s original website no longer exists. Her new blog can be found here.  I have a copy of the original blog post and will be sharing it soon.

I met two other such women suffering from sensitivities to electromagnetic fields during my visit to Dallas in 2003. One had her young daughter with her. Because I was able to have the television on, the daughter would come to my condo for a short time each evening to watch it with me. My other friend developed it while I was there in 2003. She still has a very difficult time with it today.

You may remember my post on my recent acquisition of an e-book reader. I mentioned that I chose the Wi-Fi version because it could be turned off and I wouldn’t have to sit and have a book in my lap or hand for hours with it drawing the Wi-Fi signal.

Why is Holiday Cleaning so difficult?

Hi Everyone

I have been sort of MIA lately.  I decided that I couldn’t stand my messy house any longer.  My parents and sister are coming for Thanksgiving dinner.  I don’t have any grandma duties until after Thanksgiving either.  I made the smart or not so smart decision that I would clean my house starting this past Thursday (my last day of babysitting was Wednesday).  My goal was to have everything done by the end of the day today so that I could start a sewing project listening to Christmas music on my iPod, spend some time just watching Christmas movies, or read to my heart’s content.  So I am sitting here at the computer with a hot bean bag on my back, my left shoulder is killing me and I am not quite done.

Kitchen floor baseboards washed and tile floor scrubbed.

Living room floor baseboards washed and tile floor scrubbed.

Living room furniture dusted and glass table tops cleaned.

Cushion covers on living room furniture washed, dried and put back on.

Living room blinds dusted and windows cleaned.

All photo frames off living room tables so Christmas decorations can go up.

Hall way baseboards scrubbed and tile scrubbed.

Main bathroom baseboards washed, tile floor scrubbed, counter cleaned, toilet scrubbed and shower doors cleaned.

Master bathroom baseboards washed, tile floor scrubbed, counter cleaned, toilet scrubbed and shower doors cleaned.

Master bedroom vacuumed, floor scrubbed, and furniture dusted.

Office floor vacuumed, floors scrubbed, baseboards cleaned, and desk tops cleaned.

Playroom picked up.

Sauna/sewing room cleaned so I can do some sewing.

Huge box of pomegranites seeded and put away for making jelly later.

I am determined to get the office done tonight as soon as my back calms down a little.

The playroom and sauna/sewing rooms will be done tomorrow because there isn’t much to do in those room.  It is a good thing I have acupuncture tomorrow and massage therapy the next day.

Sometime tonight I will work on my catch-up Monday post.  So what are you all doing to get ready for the holidays?

 

Catch Up Mondays: Mold – Trigeminal Neuralgia revisited

Periodically I get searches for mold and trigeminal neuralgia.  I posted this on October 15, 2012.  While I don’t have the constant pain I had for many years, a reaction or a sinus infection can set me off with pain all along the left side of my face and the feeling of an ice pick being stuck in my left eye.  I am sharing this again for those who may have similar symptoms.

Mold and trigeminal neuralgia were put in the search engine today.  I have talked vaguely about my having trigeminal neuralgia.  For those not familiar with trigeminal neuralgia, it is a condition that affects the trigeminal nerve, one of the largest nerves in the head.  It is responsible for sending impulses of touch, pain, and pressure from the face, jaw, gums, forehead, and around the eyes.  Trigeminal neuralgia can feel like a sudden severe shock-like or stabbing pain on one side of the face.  These attacks can last several seconds and happen over and over throughout the day.  Some attacks can last months at a time.

I began developing trigeminal neuralgia as the bacterial and fungal infections in my sinuses continued bombarding me one right after the other.  I developed osteomyelitis (bone infection) in the sinus bone.  I had several surgeries to keep scar tissue and the infection cleared from the bone and the sinuses in general.  The pain was so intense.  I was on pain medication from surgery and it seemed to help.  I couldn’t stop the pain medication or I couldn’t function.  I needed a pain pill in order to stop the pain in the morning so I could get up and start my day and head to work.  I needed a pain pill sometimes in the middle of the day so I could focus on my job.  Lastly I needed a pain pill to numb myself enough to be able to try to sleep.  The pain was so intense that I felt like an ice pick was being jabbed into my left eye and twisted.  The pain would radiate down through my left maxillary sinus, my jaw and my left ear.

When my ENT thought I had been on pain medication too long, he decided to try me on Neurontin (Gabapentin).  It took a large dose to calm the nerves down.  I think the maximum dose was 1800 mg. and I was on 1200 mg.  The face and eye pain calmed down but at the expense of the side effects of the Neurontin.  The side effects for me were dizziness.  I was so dizzy that I was afraid to drive and once walked several miles to and from his office to avoid driving and the possibility of an accident.

As time as moved and we have been able to keep my sinuses in better order, the neuralgia is less frequent.  An exposure to a chemical that I might come into contact with will cause the nasal passages to swell, produce large amounts of mucous and trigger the neuralgia and the pain.  I no longer do well on Neurontin or pain medication (probably from taking so much of it).  Now when it flares I just have to apply heat and rest and wait it out.  A sinus infection whether bacterial or fungal will also trigger the return of the symptoms.  We have to keep my antifungal treatment at a level that keeps the fungal infections from re-occurring as often.  I am including a picture of the trigeminal nerve to show how much of the left side of my face is affected when I have a flare-up.

Catch Up Mondays – For all the women with EI – You are stronger than you know

I originally posted this on October 6, 2012.  While this poem was written for and about women, my poem could easily be made to fit men as well.  There are men who are also suffering from environmental illness (chemical sensitivity, multiple chemical sensitivity, or whatever term they have chosen to use).  They also suffer many losses and insecurities as well.  So please let me also dedicate this to all those suffering whether male or female.  I have had folks tell me I don’t think I could do what you are doing.  I think they would be surprised to find out how strong they really are when presented with some of the same circumstances.  We are all stronger than we think or could even imagine.  I chose not to give in but to fight the battles.  It wasn’t always easy but I just couldn’t give up.

I spent nearly all of 2003 in Dallas, TX treating at the Environmental Health Center-Dallas for my environmental illnesses, having a hysterectomy and flying back home to California long enough to have sinus surgery (the reason I came home instead of staying in Dallas is a story for another time).

I posted an excerpt of “Who Am I?” on May 10, 2012.  This was written about me.  Prior to this I wrote a poem entitled “Who Are We?” as a tribute to all the women I had become friends with while in Dallas; women suffering like I was.  There are many men with environmental illness but because I was surrounded by mostly women who were sick the poem was about us.  I only know the female perspective on this illness and cannot comment on how the men feel or to explain what it is like for them to lose what they feel defines them as men.

WHO ARE WE?

Who Are We?

We are the women of environmental illness

stripped of our “identities”

The ones who no longer feel

so “feminine:

Who Are We?

We are the women who

feel older than our years

We were the caretakers of

our families

Our families are now

our caretakers

Who Are We?

We are the women whose faces

are bare, lashless eyes, pale

cheeks and colorless lips

Gray streaks of hair now replace

what was once a radiant

glow of color

Who Are We?

We are the women whose

bodies have been ravaged

We have lost our food, our

electricity, our vitamins and

our organs

We are the women who are

thin and frail

Who Are We?

We are the women who

struggle each and every day

We endure being poked with

needles, baking in a sauna

and countless physiological

and neurological reactions

Who Are We?

We are the women who walk

around behind masks of charcoal

Our smiles and frowns and lovely

lips hidden to the world

We are the women who secretly

cry out in the darkness of our

empty rooms – yearning

for the life we once had

Who Are We?

We are the women who are

stronger than we could ever

imagine ourselves to be

The Women who daily stare

adversity in the face

The Women who have revealed

our true selves to the public

Who Are We?

We are the women who have

given up our identities in

return for new ones

Gone are our contacts, hair color

and make up

Gone are our dressing in trend and

latest fashion-dos

Who Are We?

We are the women who

will survive

The women unafraid of

unmasking our true selves

We are the women who can

say, “This is the real me!”

Who Are We?

We are not the make-up, the

clothes or the hairstyles

We refuse to be measured

by fashion or trend

We are women

and we will fight to

the bitter end?

Catch Up Mondays: Mold Spores, Mycotoxins, and Cross Contamination

I originally posted this on August 27th, 2012.  As I read or hear from more and more people about being contaminated by mold, I decided it was time to share this post again.  Mold is insidious.  It gets into and onto everything including those things that we hold most dear like a favorite stuffed animal from childhood, a well-loved book, and our precious photos.  Some of you have heard this talk from me many times about giving things away.  I have heard from some that all I needed to do was place my things out in the sunshine or wash them in borax or vinegar.  For me the decision was my things or my health.  I had gone through so much by the time I was told that it was best for me to give up my things.  I didn’t want to go down that road again and risk another contamination.  I offer what I and some others have done but ultimately the decision is up to the individual.  Some have managed to keep some items and not others.  This is such an individual illness.

Many of you living in the US have seen the commercial on mesothelioma.  It talks about if you or a loved one was exposed to asbestos either directly or indirectly  you could experience this form of cancer.  It has taken years for asbestos and the damage it can cause to finally come to the forefront and for these cancers to show up.

When trying to explain cross contamination from mycotoxins and mold spores, I ask if the person I am talking to has seen this commercial.  I explain that it is very similar.  I was exposed to mold spores and mycotoxins where I worked.  I wore those clothes home and sat on my furniture, walked on my carpet, lay down on my bed, sat in my car and those same spores were spread into the air as I walked around the room.  Those aerosolized spores then were sucked in to my computer fan, my refrigerator fan, my air conditioning ducts and anything else that has a fan or takes in air.  I was constantly being re-exposed at work and then through cross contamination in my home and car.

After getting the results from my urine tricothecene test, I was told that I needed to get rid of my things (clothes, computer, cloth furniture, papers).  I was told this just as I was about to make my second trip to the Environmental Health Center-Dallas for testing and to have major surgery.  I ordered new clothes and was told that until I left and something could be done with regard to my furniture that I could cover the furniture with sheets to help protect whatever new I had bought.  I had no idea that I would be in Dallas for most of 2003.  When I came home my husband had built me a new house using safe products, tile floors, etc.  Before coming home I ordered new clothes again and would only come home with the clothes on my back and toss them and shower before coming into my house.  I was determined not to cross-contaminate my safe place.  I did not bring my computer, refrigerator, television, cloth furniture, papers or clothes.  I literally started over.

When I tell those who have asked me questions or sought advice about such things that they need to basically start over, it is overwhelming and hard for them to comprehend.  I remind them that they are just “things” and their health and recovery is more important than “things”.  I understand their pain at getting rid of their belongings.  I understand their fear of re-contamination.  In my book I wrote:

On February 11, 2004, I wrote in my journal, “I hate this aspect of my life. It causes the paranoia. I am so afraid of re-infecting myself that I wonder: even if the allergies get more manageable, will I be able to go out anyway because of this fear of mold and mycotoxin? It has already taken so much of my life away.

I also wrote:  I saw Rick toss out my old stuffed Scotty dog that I had had since I was very little. I saw him toss out my favorite old teddy bear. I saw him pack up old blankets, cloth Christmas decorations, baby clothes that belonged to the girls, baby clothes that were once worn by me. It was devastating!

This illness goes beyond the physical pain of reactions and extends to the raw emotions of getting rid of cherished belongings, being told you are crazy, being told environmental illness and multiple chemical sensitivity does not exist and of learning to deal with isolation and a new way of living.