Monster Storm Sandy

I have been working on a post about my diagnosis and health issues that I was going to place here today.  But somehow with all that is happening on the East Coast my heart isn’t in finishing up the writing and posting it today.  I will be back in a day or so with the post intended for today.

My prayers go out to all those suffering from this monster of a storm.  I also worry so much about the flooding and the mold issues yet to come as a result of the flooding and not having power to clean up after.  Mold is what got me to the place I am in now and it scares me how many more will suffer as a result of this flooding.

Thank You

I want to thank all of you who have taken the time to stop by and visit my blog.  I encourage you to sign up and follow via email to get the latest updates on posts and comments.

Tyvek – this mold survivor’s best friend

Recently I read a blog post on another site.  The post was about having company come in with fragrances, sitting on the furniture and causing the environment to no longer be safe.  It made me think about my own surroundings and guests.

I don’t have a lot of visitors into my home.  I think the biggest reason is that if you want to come visit me, you must put on a Tyvek suit.  The suit helps block out fragrances from laundry soap and keeps them from accumulating on my furniture, not that I have anything exciting but my wicker chairs do have fabric cushions.  The suit also prevents anyone who may have mold on their clothes from contaminating my home.  I know this may sound extreme, but I have been through a lot with my mold exposure.  The last thing I need is for my house to be cross contaminated with mold spores or mycotoxins and have nowhere to go.  There may come a day when I no longer have to be so careful; I just don’t know when that will be.

So until then, if you want to visit me or ride in my car, put on the Tyvek suit.  I buy a one size fits all (XXL).  If the sleeves or legs are too long, just roll them up.

Physical and emotional effects of an exposure

In 2004 I had begun to be sent to various doctors for the defense in reference to my worker’s compensation claim.  As many others with environmental illness/multiple chemical sensitivity know, the symptoms from an exposure can be physical (coughing, chest pain, muscle weakness, brain fog) as well as emotional (depression, emotional to the point of tears, anger).  I was experiencing so many of these symptoms and my appointments to some of these doctors had been made very close together compounding my problems.  After one such appointment I wrote the following in my journal:

When Dr. Spitzer began to clean my sinuses he could not believe how bad they had become in a short amount of time. The exposure two days earlier had caused my sinuses to produce a large amount of mucous. He said that if he had not seen it in me, he would not have
believed that one exposure such as I had in the office building could cause anyone to produce as much mucous as I had.

A couple weeks after my defense appointment, I was still feeling bad and the depression was becoming worse. On September 26, 2004, I wrote, “What makes them think I am coping? What makes them think I am handling this? They should just read from my journals and then they will soon discover what life is like for me. For I EXIST – I do not LIVE! I eat to live—I do not live to eat! I feel like a caged animal at the zoo, on display for the morbid curiosity of others. Look at the crazy woman. She can’t come out around us. She wears a funny mask! Why did God keep me alive? What purpose am I serving?” I also wrote a couple days later, “I just want to die! I refuse to live like this forever. I would rather be dead! I am going to stay focused until my case is over and then I don’t care what happens to me. Maybe I will quit my shots, maybe I’ll drink beer, wine, and sodas, maybe I’ll eat bananas until my throat swells shut! Maybe maybe maybe maybe I will continue my treatment and speak out loudly against mold. Maybe I will help someone else or be a pain in someone’s side. Maybe maybe maybe I don’t know and I don’t know if I care. I am in a horrible funk! I feel like ‘me’ is slipping away, layer by layer.”

I am certain that many of you can identify with this.  Unless you have a physician who is truly compassionate and accepting of your limitations, a doctor’s visit can be hell.  I have experienced my fair share of these exposures in the doctor’s office.  Fortunately for me I do have some medical professionals who care for me that are willing to make accommodations to keep me as safe from exposure as possible during my visits.  To be told to change doctors (as my workers’ compensation authorized medical examiner told me to do) can cause much panic and anxiety.  I have had two very wonderful doctors as well who passed causing me sadness at their passing and panic at having to find replacements.  I wish all of you the best in finding medical professionals who do not minimize your condition or describe your condition as all in your head.

I have decided to do my best to survive no matter how painful things become.  I have become determined to speak out about mold and about this illness.  I have a voice and I am going to use it.  I ask you all to do the same.

Comparing surviving this illness with surviving cancer

Back in the middle of this illness as I was losing friendships, losing my self and realizing not very many people really understood what I was going through, I began comparing my illness to someone with cancer.  What I wrote was in no way meant to minimize cancer (I have had my fair share of cancer scares.).

Not it’s not cancer

            Cancer patients take treatments and either

                        are cured or die at the end of so many months

            I don’t want to have cancer

            I don’t want the treatments but am not

                        afraid to die

            I will not die but how much

                        better will I get – there is

                        no answer

            No, it’s not cancer

            It is mold and chemical sensitivity

            Cancer patients, at least in the beginning,

                        can go out to the mall, to movies, to visit a friend

                        go on trips and stay in hotels

            I cannot go do all these things

                        and when I finish treatment

                        my limitations will not change

            It is not cancer

            Cancer patients are understood

                        because their disease is understood

            My disease is not understood by

                        many

            Few can fathom the world I have

                        been forced to live in.

            Few can understand that mere mold

                        can be so devastating

            It is not cancer

            My body is not ravaged by it

            My body has been ravaged

                        by mycotoxins – which

                        ironically can cause cancer

            I will not die and leave

                        this world for a spiritual one

            I will leave this world for a world of

                        shelter, loneliness, and isolation

            I will give up my “things” for ones

                        less beautiful and comfortable

            I will give up my pictures and

                        collections in trade

                        for their memories

            I will give up my lunches out with the girls

                        for a bowl of beans at home

                        by myself

            No it is not cancer

            But a different sort of cancer has taken

                        my life away and left me

                        caged and feeling very alone

A friend who also has suffered with the ravages of mold exposure and the loss of friendships, dealt with the isolation, and fought back recently sent me the following link.  While the link deals with what to expect when you are diagnosed with cancer, a lot of the same things apply to having this illness.  I was truly moved by what the author wrote.

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

I just want to disappear

Depression always had me in its tight grasp.  It was my constant daily companion.  As I have been working on finalizing the text for my book I ran across this quote in the book.  I am sure many of you suffering from chronic illness, multiple chemical sensitivity and mold induced illness can relate to what I wrote.

I always wanted to just disappear. In mid-March I wrote in my journal, “Hey Mr. Magician—Do your magic on me—Take my life and make it disappear—Cast an illusion on the way I live—Hide my tears and silence my cries—Hey Mr. Magician—Make a new life appear from behind a scarf—A life where I can no longer be afraid—Afraid of smells, chemicals, and mostly afraid of mold—Hey Mr. Magician—Can you put me in the box—Tap your wand abracadabra—I appear out in the real world—And the non believers are trapped in the box—Hey Mr. Magician—Show me your magic—Take my troubles and my fears—Make them disappear.”

I hope that those new to this blog will sign in to follow via email.  I also look forward to hearing from others who suffer from this illness.

At a loss for words.

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.

Why did my face feel like it was being pulled apart?

Valentine’s Day 2001 was anything but romantic. I had been on the IV for a few days and the antifungal drug and oral antibiotic for close to a week. I had gone to work as usual…..Shortly around noon, my throat began to feel restricted. I tried to wait it out. Finally I phoned Dr. D. He suggested that I go to the emergency room. I drove myself to the hospital, which, I realize now, was probably not the smartest thing to do.  While waiting to be seen, I phoned Sarah. I asked her to pick up her father as soon as he got in from school and to drive him to meet me at the hospital emergency room.

The constriction in my throat began to get worse and I was beginning to have tremors. My face felt like it was being pulled apart. The ER doctor came in. I told him—in between spasms in my throat and face—that I was having an allergic reaction to one or more of the medications that I was taking. He asked what medications I was taking and why I had an IV line…..

The ER doctor had the gall to tell me that my reactions were not typical of allergic reactions. I was just having an anxiety attack.

Later the next day while Sarah was visiting and helping me make soup, I began having problems again.  In my book I continue to write:

Some of the same symptoms began while we were working on the soup. My throat began to get tight and feel constricted. We phoned Dr. D, and he told me to come to his office. Unfortunately, he was not in his local office. Sarah drove me about six miles to see him at his other office.

By the time we reached Dr. D’s office, I was beginning to have tremors. He ordered an EKG and had my blood sugar tested. My EKG was normal, as was my blood sugar level.

The tremors and spasms in my face and neck continued to get worse. This time, however, I also began to have tremors on the right side of my body. My right hand and leg would shake. During the spasms in my neck, I had difficulty breathing. The doctor’s staff would ask me questions. I would not answer right away so they would ask them again. I had no control over my body. I had to wait for the tremors and spasms to stop to answer questions. It was if I were riding a wave. I would have a spasm and tremors and then it would stop, only to start up again within seconds. It was almost like a seizure.

I was so frightened, and I hated that my Sarah had to see me in this state. I didn’t want to die here, not like this!

Dr. D ordered an ambulance to take me to the hospital. The tremors and spasms were getting out of control and I needed to be in a hospital setting. I remember hearing his nurse asking if he wanted lights and sirens. He responded yes! He wanted the ambulance there as soon as possible. Hearing the urgency in his voice only made me more terrified.       

I became increasingly sicker and had a fourth sinus surgery while in the hospital and developed so many problems that we had to stop most of my medications to see what was causing what.  I was on an oral antifungal, oral antibiotic and IV antibiotic.   After all this, I thought the worst was over and my journey towards wellness would begin.  I had no idea what was to come.   The tremors and the pulling apart feeling in my face (as if someone was taking my skin and stretching it over facial bones that were too big for it) soon came to be a common occurrence when I reacted to chemicals and molds.

It is because of the skeptics like the doctor in the ER on my first visit and those who know I have been sick but not really known what I have gone through that I have written my book.  There are still so many out there who do not believe mold can make you chronically ill and that there is such a thing as multiple chemical sensitivity.   I hope to have the final edits soon so that I can get my cover photos done and submit it.       

Rotation Diet

The rotation diet was one of the first things I learned when testing for and battling with food allergies.  It was very hard for me to figure out in the beginning because I was so deeply sick and dealing with impaired memory.  The rotation diet operates on not eating the same food more often than every four days or a food in the same food family more often than every two days.  

An example of a food family is:  peas, beans, peanuts, chick peas, etc.  One obstacle was that so many foods were in the same family.  The hardest part for me besides trying to figure it out was that as soon as I would get a menu planned out, I would lose a food because of an allergy to it.

I write in my book about my first experience with testing and the rotation diet.

The twosome soon became a trio. Another young woman arrived the next week, and she joined the group going to and from the condo, the health center, and the grocery store. The rotation diet that we were placed on was overwhelming to figure out. We were all sick and tired and baffled at how to best tackle this diet. No food could be eaten more often than every four days, and no food in the same food group could be eaten more often than every other day.

We decided that we would eat our meals together. We would plan together, shop together, and each would be responsible for a certain portion of lunch or dinner. This worked for the first week or so. But as the three of us started our food testing, shared meals became more and more difficult. I wrote in my journal, “My body has gone through two anaphylactic and a delayed reaction three days in a row.” Every day one or all three of us would lose another food or two. By this time, though, we had a grasp on the rotation diet. We would still try and eat together but bring our own food.

I wrote on March 9, 2002, “Hooray, it is Saturday. We all can sleep in tomorrow. I have been very depressed all day. After the sauna I did some food testing. I cannot eat blueberries or navy beans now. So I have been tested for 18 foods and have five safe ones. Not good odds when I need 24 safe foods for the rotation diet….”

Breakfast was the same every four days. Day one was cooked apples, day two was eggs, day three was pears, and day four was raspberries.

I have thrown away so much of my materials and recipe books.  I didn’t keep anything when I moved into my safe house.  I am getting a new copy of the rotation booklet that I had and will post more on the diet in the near future.  I will also post some other recipes that I have found that are safe for me and avoiding mold at the same as well.

Sleeping on Blankets

What do other multiple chemical sensitive and mold sensitive sufferers sleep on?  I wondered about that.  When I came from Dallas and moved into my new safe home, I did not have a bed.  I couldn’t tolerate all the chemicals in traditional mattresses.  My only option:  an old metal army cot my husband managed to find and clean for me and cotton blankets.  It took five or six cotton blankets folded in half or thirds depending on the size of the blanket to make my mattress.  The downside, once I crawled in, I immediately sank to the middle.  I was always tossing the blankets in the dryer for two reasons.  The first being to help with dust mites and the second to fluff up the fibers.  The first night’s sleep on those blankets was heavenly, they were warm and soft and fluffy.  By the next night they were cold and matted together.

I ventured out and ordered a wood bed frame and a cotton futon type of organic mattress.  I had it made especially without flame retardant chemicals (you will need a doctor’s prescription for this).  When the mattress arrived it had a very distinct odor about it.  I phoned the company and was told it would need to air out for a couple of weeks.  Since it was summer time, I took it out during the day in the hot sun.  By the third week, I still would get my mold reaction whenever I put my face into the mattress.  I had to send it back which not only cost a restock fee but cost a fortune to send it back by freight.

The cot with the sagging  wires and hard blankets continued to be my bed for a very long time.  One day when visiting a doctor of mine I mentioned the mattress problem.  He said many of his mold patients had resorted to buying air mattresses and letting them off gas in the sun and heat of summer before they could use them.  I was possibly reacting to the organic mattress because organic cotton is not sprayed with fungicide and therefore can have mold spores in it.

My husband and I purchased an air mattress and baked it in the sun for quite a long time.  Then I finally tried it.  I was in heaven.  It was firm and soft.  It didn’t sag in the middle thus alleviating all the bank pain I had been suffering.  Air mattresses, however, are not meant to be used as every day mattresses.  After about a year, they develop a slow leak (which we can never find to fix) or a baffle breaks leaving a huge lump in the middle of the bed.

Aerobed makes a pvc free bed called Performa Lite and there is Kelty Sleep Eazy pvc free air mattress.

I am curious, what do others use or tolerate?