Category Archives: Sick Buildings

How I Got Here

Today I am honored to be featured on Notes From Tabor Lane penned by Katherine Logan.  I am so thrilled at the wonderful response I have received from my fellow Rave Reviews Book Club members in supporting my time as “Spotlight” Author. 

My life was full and busy. I was a stay-at-home mother of two teen-aged daughters.  My life was wonderful and hectic.  If it weren’t for my at-a-glance calendar I would have been lost.  I was a board member of the local elementary school, a 4-H leader, president of the PTA, and a member of a local athletic booster club for young ladies at a new high school. When I wasn’t busy with community events I was playing Bunco with a group of women that I had met through PTA..to read more of my guest blog post with Katherine, please click on the link above.  Don’t forget to take a moment to leave a comment and thank her for hosting me.

Catch-Up Mondays: I just want a new nose – revisited

I originally posted this on April 7, 2013.  My sinuses have been one of my biggest nightmares since the mold first decided to take up housekeeping in them.  Surprising (knock on wood) after all the exposures I received while being with my dad my sinuses have remained healthy while the rest of my body is still protesting.

Ok – we all at some point we all wish we could change something about ourselves.  I have never really considered changing my nose although it isn’t a perfect nose.

I am not talking about wanting a new nose because of the way mine looks.  I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like.  While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.

At one point I joked about getting a silver nose like the villain in the movie Cat Ballou.  Thinking, mold couldn’t grow in the silver.

Or maybe I could exchange my nose for one of these below.  They are all nice looking noses if they didn’t come infected with mold.

Click to show "Human nose" result 3

Or maybe I would try to see about getting Elmo’s nose.

A friend back in the beginning used to joke with me about how to get rid of the fungal infection.  Her husband was an AG teacher and they also lived on a ranch.  She told me she would just go and get some Dursban and pour it into my sinuses.  Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing.  Can you imagine putting that in your sinuses?  Not me.

What body part would you like new but not for cosmetic reasons?   If I chose cosmetic reasons, I would be changing out a lot of parts.

FEAR!

In March I read a blog post that my friend Karen Ingalls had on her blog outshineovariancancer.  The title of the blog post was For No Fear: You Must Know Fear.  The title intrigued me and I would have loved to have found this back in the days when I was so fearful; fearful of living another day, fearful that I wouldn’t live another day, fearful of the next reaction, etc.

Thank you Karen for sharing such a wonderful post with us.

 

REVIEW: ALLERGIC TO LIFE BY KATHRYN CHASTAIN TREAT

I was excited to open my email and discover that a review of Allergic to Life had been done by Alex Jones and placed on his blog.  Alex also suffers from new found chemical sensitivities and did an excellent job reviewing and highlighting my book.  Please visit Alex’s Psykoscribble Blog and read my review.

I first met Alex through Rave Reviews Book Club where he is an active member, supporter, and reviewer.

I Lose Words! Where do they go?

There has been quite a bit of talking the last few days from MCSGal and mcslearningtoliveadifferentlife about what our canary is and about losing words when in a reaction.  I posted this originally on June 23, 2012 and then posted it again in my Catch-Up Mondays on July 28, 2013 with the title At a Loss For Words.  I still lose words despite the length of time it has been since my original exposure at work.  I lose words during a reaction and when I am not in a reaction.  The mold just messed with my brain.  I have difficulty typing certain words.  Despite being able to write these words and spell them to you out loud I type them wrong every single time.  I want to type a blog post and not correct anything in it and let everyone see how I truly type before I take the time to go back and make corrections. One of the words that I spell wrong every single time is you.  When I type it is always appears as yoiu.  I have been very far behind in posting new blog posts.  I have many ideas but just can’t seem to get myself back to the task of writing.  Instead I have been cleaning house, something that is routine and helps me deal with all that has happened.  I promise to be back soon in full swing soon.  In the meantime there may be some reblogs of some amazing bloggers I follow and a few extra Catch-Up Mondays.  

Don’t you just hate it when you lose or can’t retrieve the word you want from your brain?  Since becoming ill I have found it is a regular occurrence.  I will be talking to someone and in the middle of a sentence I can’t come up with the word I want to use.  Try as I might, the word won’t come.  Sometimes I have been successful by trying to find another word that means something similar.  In the middle of a reaction as I was in yesterday, I was hard pressed to come up with the other word.

What was the word you say?  I don’t know.  I still don’t know.  I was trying to convey how when dealing with someone I would just respond very vaguely without giving either a yes or no answer.  As I was searching for the word I became tearful.  I tried and tried and finally came up with equanimity (calmness, poise, serenity, self-possession).  It seemed to work but wasn’t really the word I wanted to use.  Maybe I was wanting to use apathetic (showing little or no emotion, indifferent, not interested or concerned).  As I am writing this definition I think that is the word I wanted to use.

As hard as I try to retrain my brain by reading, crossword puzzles, etc. I still lose words in conversation even more so in the midst of a reaction.  I still find when I type that I transpose the same letters in certain words over and over again even though I know how to spell the words.  Yesterday when I was in the reaction my handwriting became hard to read (see picture for a sample of my handwriting in my journal during a reaction) and I spelled things wrong, my right hand became very cold and I had a much harder time expressing myself.

I have been told that mold mycotoxins can damage brain cells.  Sometimes you regain some of the processes you lost but usually not all of them.  When I was first exposed to mold (didn’t know it then) I would take phone messages and then look at them and realize they didn’t make sense and have to re-write them. Sometimes my boss would come in and ask me what the message meant even after I am sure it had been rewritten.  My handwriting was also deteriorating .  At the time I would become frustrated over this but it never dawned on me that something serious was going on with me and my brain.

When are things just things?

I have talked many times about the heartache of giving my things away, of standing idly by watching them being thrown in the garbage bin, and the grief that came along with it.

I have posted about having to choose my things or my health.  I have told others that you have to choose between your health and your things.  Yes they are just things!  But we hold a certain attachment to things as human beings.  They are reminders of our past; the good times and the bad times.  They remind us of the special day we had shopping with our grandmothers and the beautiful doll or beads she bought us.  There are rarely any photos of these things we hold dear to our hearts and souls.

I had the wonderful opportunity to meet via Skype a woman who found me through searching the words “Allergic to Life”.  Somewhere in our conversation the subject of purging or letting go of our items in order to lower our load and possibly gain some headway in our health came up.  I mentioned it is like going through the grieving process when you have to let go of your things.  She said that as humans we need attachments to things in our lives.  We talked for some time about letting go and the stages of grief.

I have said it was easy to let go because I was so very sick and just wanted desperately to get well.  In reality it wasn’t easy to let go.  I thought of taking pictures of things as my husband tossed them into the garbage bin.  I wanted to place them softly in the bin (I don’t know why because once at the refuse they would be piled into a pit with all sorts of garbage but they were my friends from childhood.)  It was my Scottie dog (yes it was shedding a lot of its coarse hair) my big teddy bear (even though it was one-eyed – the other eye lost many years ago) and my little stuffed dog with the ears worn so thin from rubbing that the bells had long ago fallen out them.  It was crafts that I had made to fill my home with Christmas cheer and handmade witch dolls that adorned our home at Halloween.

I watched sadly as my mother removed dresses, skirts, coats, and shoes from my closet and placed them in big black garbage bags.  They sat in piles around the bedroom floor that was already bare from having the carpet removed because I was reacting to it and needed a safe place to sleep.

Bags of Clothes, Shoes, Purses

Bags of Clothes, Shoes, Purses

A few days ago I was in the shower and began thinking about my losses.  Yes I missed the loss of my nice clothes (I would not be able to wear them today.  I was so thin and sickly when I purchased them.) but that didn’t seem to cause any great deal of emotion.  Soon I was thinking of my stuffed animals and missing them.  They weren’t anything that I would have played with but they used to hold a prominent position throughout my home, an homage to my younger self.  The memories flooded me and I felt saddened.  Fortunately for me the sadness quickly passed and I was back in the present.

So as easy as it is to say, “Things are just things.”  They truly aren’t.  They are a connection to our life and our memories.  It is a struggle to let go and know they are lost forever.

What things do you hold dear to your heart?  What would hurt you the most to give or toss away if you had to choose it over your health?

 

The Cost of Environmental Illness

Environmental Illness is costly not only emotionally to the person suffering through it and their family but it is monetarily costly as well.  In the beginning of my illness I was sent to an allergy and immunology specialist by my ENT, Dr. Spitzer.  Our insurance paid for the office visit but did not cover the EPD (enzyme potentiated) treatments.  These treatments consisted of two injections given every two months at a cost of $150.00.  My insurance did not cover the special B Vitamins I needed.  And it didn’t cover the special flours and other items I needed to bake my own breads, cookies, and crackers.  I had been told to avoid wheat, oats, barley, corn, and fermented products like soy sauce, catsup, vinegar, etc.  I began making trips to a health food store an hour from home to buy rice flour, tapioca flour, potato starch, garbanzo bean flour, carob products, guar gum (a stabilizer to replace gluten not found in these flours), and special rings to make my hamburger buns.

Fast forward a bit and I need to take a nebulized antifungal.  My insurance would pay for the nebulizer  ($150) but not the compounded antifungal for the nebulizer ($1200.).  Fortunately, I was put into a a trial that allowed me to buy the antifungal for $300.00 I believe.

Before long I was being sent to Dallas for the first of what would be several trips. I had filed for workers’ compensation but who knew what the outcome would be and if these new expenses would be covered.  My first trip included the cost of airfare for both my husband and I from California to Dallas.  It cost us over $400 to rent a car at the airport for the week my husband would be there (we learned that it would have been cheaper to rent a car outside of the airport).  There was the expense of my husband making a second round trip by air to visit me when my stay was to be extended longer than we had planned.  The cost of my room was $1100 per month for a two-bedroom environmentally safe apartment if I shared it with a roommate.  My stay was nearly four months.  None of these expenses were covered by insurance.  I had to buy organic food and unusual foods for testing when I was rapidly losing foods that I normally ate.  A loaf of yeast-free bread made of water chestnut flour was $7.00.  A water chestnut flour bagel was $3.00.  My bottled water was over $1.00 per bottle. I had to have special shampoos and soaps as well.  Again these were not covered by insurance.  My treatments had to be paid up front and then submitted for reimbursement by my insurance.  Each item I did skin testing on cost me $23.  I can’t even begin to tell you how many items I tested just to find safe foods and that was before I tested molds, pollens, and other inhalants.  I was doing two IV therapies a week at $125 per IV.  I was doing daily sauna therapy that was $35 per session.  I was doing oxygen therapy.  I was going through numerous labs and tests that were also very expensive.  Weekly I would pull out a credit card one that still had room to charge on it), pay the weekly bill, then spend the weekend putting it all together to mail to my insurance.  They paid a percentage of those bills.

I returned home from Dallas with antigens that I needed to take daily (I rotated them using a four-day rotation) and these items were expensive as well.  After having a urine Tricothecene test, I learned that I was continually being made more ill by the mycotoxins on my clothing that had been contaminated from work.  I had  to give away my clothes and start over because the cross contamination of mold and mycotoxins would continue to make me ill.  My mother came over and bagged up all my things.  You can see pictures of this in my blog post, Environmental Illness – Not for the Faint of Heart.  I also purchased a sauna for $3,500.00 that was not covered by insurance but was needed to continue my detox regimen at home.

I bought only a few clothing items because I could not afford to replace my entire wardrobe.

Dr. Rea from the Environmental Health Center – Dallas issued a letter that included a rough estimate of costs that I would incur as a result of my mold exposure to be used in court.  I will include more from that list and other expenses during Part 2.

Catch Up Mondays: How Allergies Prevent a 50 Shades of Grey Life

A Lot of Women around the Pool are Reading the Same Book

Amanda from Celiac and Allergy Adventures featured a blog post with this title.  I loved how she compared allergies and Celiac Disease with the book, 50 Shades of Grey.  For me adding in mold and chemical sensitivities and Amanda has it right on.  I thought I had posted this in 2012 but in searching my past blog posts I only found a few comments and Amanda’s text wasn’t shown.  So for all of you, please visit Amanda’s blog and read this post.

Catch Up Mondays: I was feeling better when I left the moldy place. What happened? – revisited

I first posted this on November 16, 2012.  This topic is one that is hard to grasp but I have been asked more than once why this could be happening.  The toxins in the mold, mycotoxins, cause a great deal of damage to our systems.  Only after we remove ourselves for a time do we truly see what has happened and it is not what we are ever prepared for.

How many of you who have suffered from a mold exposure and asked this same question?  What happened?  Why am I more allergic and feeling worse?

The simple and yet not so simple answer is that it can take 2-12 weeks for your body to get the toxin and load level down enough after removing yourself from the constant exposure to recognize all the allergic responses the mold has caused.  You feel better immediately because you are no longer being exposed.  Then the allergic response kicks in and you suddenly realize that things that were never a problem before suddenly are.  The mycotoxins have done their damage and now you are becoming aware of what those damages are in the increased sensitivities and other illnesses that crop up (fibromyalgia, chronic fatigue, chronic sinusitis, autonomic nervous system dysfunction and severe depression to name a few).

I stopped working in the moldy environment and thought I was feeling a little better but then I was placed in a new school building where construction was going on and dirt was being moved everywhere for landscaping.  I began getting exposed to the mold spores in the dirt (my air filter cartridge by my desk needed to be changed after two weeks rather than the usual 2-3 months).  I was being exposed to toxic paints, toxic glues in the carpet as well as high levels of formaldehyde in the carpet and all the new furniture.  I was also being exposed to the dust from construction.

A few months later I went to the Environmental Health Center-Dallas where I was not exposed to chemicals or fragrances of any kind.  Slowly I began to notice smells when I went to the grocery store and would become dizzy after a short time in the store.  I was still wearing my clothes that I had worn in the work environment.

Fast forward about 8 months and I had a urine tricothecene test done which revealed a high amount of tricothecenes in my urine.  I was told to get rid of my clothes.  I did and then headed for Dallas for surgery.  Between removing my toxic uterus and ovaries (my ovary we learned later had 125 ppb of tricothecene mycotoxin in it), anesthesia and starting over in safe clothes I became even sicker.  I began noticing that when I got near mold or someone who still had their clothes  from their moldy homes I would go into tremors.  I experienced these tremors when testing molds and mycotoxins.  My chemical sensitivities and food allergies were also heightened.  The worst of this happened about six weeks after my surgery.

Friends of mine have told me the same stories.  Some had this happen exactly at 8 weeks; some had it happen just before week 12.

Girl quits school over allergy to books, part 2

A few days ago I posted about a young woman who has been forced to quit school because of an allergy to books due to dust, mold, and chemicals.  I wrote that could empathize with this young woman because of my allergies to mold and dust and my extreme sensitivity to chemicals.

A dear friend and fellow blogger, Michellina,  from the-labyrinth is a student at Victoria University in Australia.  Despite having similar allergies and sensitivities as I, she has managed to get the most amazing accommodations at her university allowing her to continue her education.  I am in awe of all that she has managed to accomplish for not only herself but her fellow students who may or may not know how to go about getting accommodations or who may be afraid for fear of being labeled “crazy”.  Please read Michellina’s post and learn all that she has managed to get done while a student at Victoria University.