Tag Archives: mold book

How Do You Get Fragrances and Chemicals Out of New Clothes?

Those of us who have MCS (multiple chemical sensitivity) are all to familiar with the daunting task of getting fragrances and chemicals out of clothes that have been purchased in  the store or in online shops.  I have found that online purchases are usually easier to deal with as they haven’t been exposed to as many fragrances and other chemicals found  in most department stores.

Depending on where the piece of clothing was purchased and the fabric it is made of plays a big role in how many times I have to wash the item.  For new purchases, I place the clothing in the washing machine with baking soda, powdered milk and 7th Generation Laundry Soap.  I allow the machine to agitate a little and then let the clothing soak for an hour or two.   Once the soaking has stopped, I finish the washing cycle and take a whiff.  Generally it can take three to four washings to be able to tolerate the item. If this doesn’t work I may add a little AFM Super Clean to a wash cycle.  Some of my information has come from a book by Carolyn Gorman with Marie Hyde.  The book is titled, Less-Toxic Alternatives.

I know others who have literally had to boil their clothes to get some of the formaldehyde and other chemicals out.

I am curious what have you tried to remove chemicals and fragrances from new clothing?

Not all Environmental Illness Patients Are Equal

People have often asked why there  aren’t more support groups where sufferers with MCS (multiple chemical sensitivity) can gather. One thing I discovered in the beginning of this journey is that we don’t all have the same sensitivities, sensitivity levels or tolerances when it comes to MCS.  While I may tolerate newsprint and be able to read books, another friend cannot.  While one friend may tolerate a certain fragrance free shampoo, I may not.  Trying to get people together with such different and extreme sensitivities along the spectrum is often difficult.  There is also the difference in sensitivities to public buildings.  Where could we meet?

I had a friend when I was in treatment in Dallas who needed to stay in my room for a while.  In order for her to stay, I needed to keep all my books and papers in Ziploc bags.  I could not have the water on in the condo while she was there because she was too sensitive to the chemicals in it.  While I couldn’t drink the water (which was filtered) I could still wash my hands in it and wash out my clothes.  I made concessions for her to be able to stay with me.

Mold exposure sufferers have yet another problem.  While there are those who are ill from a mold exposure, they may not have made the heart wrenching decision to part with their belongings or even know that these belongings could be keeping them ill.  Being around someone’s belongings that have mold spores can send me into a severe reaction.  Again, where would we meet?  Trying to find a safe place that does not either have mold or chemicals that more than one person can tolerate presents problems.

Finally there are also those with electromagnetic field sensitivity (EMF).  These people deal with the horrible pain associated with electromagnetic waves.  Something as simple as a cell phone can send them into excruciating pain.  Wireless internet, computers, televisions and for some the electromagnetic waves coming off their stoves when ovens are turned on can cause pain.  One of my best friends would not be able to come into my home until I turned everything off: my cell phone, the computer, the television, unplug the cordless phone, the oven.  I would also have to put my books away in plastic bags or tubs.

We are all suffering the same and yet we are so very different.  I would love to meet with others but finding others with the same or similar sensitivities as me is not easy.

Aspergillus Flavus

Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus.  I was placed on an antifungal.  There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again.  I had just had the PICC line for the last IV removed only six weeks before.  Everyone kept asking if I knew of anyone else like me and I didn’t.  After I started searching on the internet I found a group online through yahoo groups.  Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was.  To visit the aspergillus support group or the fungal infection trust:  www.aspergillus.org.uk/newpatients   www.fungalinfectiontrust.org

In my book I write:

The more I read, the more terrified I became.  Aspergillus is not something that just goes away on its own.  It is extremely difficult to get rid of.  There was more than one form of Aspergillosis.  ABPA (acute bronco pulmonary Aspergillosis) affects the lung.  There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body).  The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream).  The invasive form usually results in death.  Those were not words I needed to read especially in the depressed state I was in.

Every time I saw my ENT I asked, “Are you sure it isn’t invasive?”  Each time he reassured me that he did not think so.   I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick.  While I do have to deal with this, I thank God every day that it wasn’t the invasive form.

Editing

Hello Everyone

I just received the edits for the book.  I am in awe of what editors do.  It is no wonder it costs so much to have books edited.  I have lots of work ahead of me to prepare this for another run through with the editor.  I am very excited to get started.

Look for more posts to be coming soon.  My thoughts are scrambled as I have started reading through the document this evening.

 

Who Are We?

We all define ourselves by who we are and what we do.  Our lives revolve around these roles.  We are teachers, parents, bankers, lawyers and nurses. 

For years I defined myself by what I was.  I was a daughter, sister, wife, mother and friend.  I also defined myself by what I did.  I was a friend, PTA president, Booster Club Member, School Board Member, 4-H Leader, Band Mother, Room Mother and Secretary.  I was someone who loved gardening, loved to cook and bake and loved to sew. I loved to take my daughters shopping and I loved to lunch with friends.

What happens when we suddenly lose the ability to be what gives us our identity?  What happens when what we did that defined our lives is no longer there?  Do we suddenly become something else?  Do we move on or do we give up?

When I no longer was able to work, go to the movies with friends, participate in my everyday activities, volunteer or even attend one daughter’s graduation or participate in the planning of my  other daughter’s wedding my world came to a stop.  I no longer felt I knew who I was.  I wasn’t the person that I had been.  I didn’t look the same or feel the same.  Who was this crazy woman behind the mask that could only eat a few limited food items, could not color her hair or wear her contact lenses any more?  My IDENTITY was gone; stolen away from me. 

For years I wrestled with this.  Who I was hadn’t changed.  I was still a daughter, sister, wife, mother and friend.  But I was not a Board Member, PTA Member, 4-H Leader or Booster Club Member.  I didn’t bake because I couldn’t eat the things I baked.  My cooking skills diminished as I had very little to cook.  I didn’t sew because it caused anxiety to try to look at shapes and colors and prints.  I didn’t  lunch with friends or take my daughters shopping because going into stores and malls made me very ill.  Because of all these losses I felt I had no identity.  I felt I had nothing to offer.  I found myself writing poems about this in the middle of the night when I could not sleep.  From my book a portion of a poem entitled, “Who Am I?”:

Who Am I?  Stripped of all the things that were once me.  No more contacts – I now have the weight of my glasses on a face that always hurts.

Who Am I? I am the one whose hair makes her feel old – gray with time.  I am the one whose face feels hollow and sunken.

Who Am I?  I am the one sitting patiently by waiting for a treatment to bring her back into the real world.  I am the one trying to be strong when constantly given more bad to deal with.

Who Am I?  I am the one who cries secretly at night – alone in her room.  The one who prays to God for the strength to go on.

It has taken a long time to realize that I can still have an identity without the labels of what I can do.  I am “me” and no one or no illness can take “me” away. 

Osteo What?

I had my first sinus surgery in November 1999 shortly after the attempt at aspirating my sinuses failed.  By January I was still sick and and getting black mucous from my sinuses that my doctor suspected could be fungus.  A second surgery was performed in March 2000 to try and alleviate all the pain I was having.  I continued to be sick and in pain.  By April things had gotten horribly bad.  From my book:

…I received a devastating phone call from Dr. Spitzer.  The news was not good.  He had received the results of the bone scan.  The scan showed I had osteomyelitis (an infection of the sinus bone) and I would have to take antibiotics intravenously for six weeks.  He had scheduled for a home health nurse to come to my home that night and start and IV…..After several attempts by the home nurse to place a line in my hand, she gave up…the nurse phoned my doctor and I was told to come in at 7:45 a.m. and he would place the IV line and I could take my first dose there…

The schedule for taking this antibiotic (Primaxin) was exceedingly difficult on me.  Taking Primaxin is like taking a chemo drug.  The IV schedule was three times a day for six weeks.  I lost sleep because of having to get up early just to get the medicine out of the refrigerator so I could take it an hour later and going to bed late because of my night time treatment.  I lost my appetite and began losing weight.  Depression came on me like a big black cloud.  Eventually I had to cut my work schedule to half days because I was too tired and depressed to work a full day.  Here I had only been working less than a year and had taken time off work for two sinus surgeries and shortened my work days.  The guilt I had for leaving my co-workers in such a mess just deepened my depression.  Even then I was confident that I was going to get well and had no idea the ride I was in for.

The Beginning of the End

I received a call that I had been selected for a position as a school secretary.  I was so excited to return to work that I never questioned the comment by a co-worker that she sometimes burned a candle to mask a smell the office sometimes had.  I never asked what it was or what could be causing it.  I was just so excited to return to work after being home forever.  I was hired during the end of the school year so we spent a month cleaning the office when school ended (file cabinets, the old walk-in safe, etc.).  Before I knew it I was sick.  Antibiotics wouldn’t touch the sinus infection.  When things never seemed to go away I was referred to a ENT specialist.  The pain was so bad yet nothing would come out of my sinuses.  We had scheduled surgery for December.  In my book I describe what happened next.

…..scheduled another appointment with me to see how my sinuses looked and he said he would try and aspirate the sinuses.  My appointment was for the afternoon.

I arrived at the office not knowing what aspirating the sinuses meant….A numbing agent was placed on the gum and the underside of the lip area. …Then I was given a couple of shots of anesthetic to further numb the area.  I made the mistake of looking at the tray of tools he would use — a hammer and large type of nail.  There were also some needles.  I began to get nervous and to panic.  ..He returned a short time later, took the nail and placed it at the gum line and began tapping at it with the hammer in an attempt to get through the sinus cavity….I could not feel the nail but my head shook violently with each tap of the hammer.  An eternity seemed to pass before the nail broke through the sinus cavity.  The doctor placed a syringe in the whole the nail had made in the sinus cavity and flushed it with saline.  NOTHING HAPPENED! …..I had gone through this awful ordeal and my sinuses had not drained.

This was just the beginning of many things I endured to get to where I am today.  This illness has taken its toll emotionally, physically and financially.  I am happy to say that I am progressing slowly but progressing none the less.

Sleeplessness

Thank you Melatonin.  I have had two nights where I am in more of a twilight sleep than anything else.  It is as if I were asleep and yet awake because I was thinking of things and worrying about things while not yet really alert.  I have had this problem of restless sleep and insomnia since I became ill.  Finally I gave in and took a melatonin last night.  I finally feel a little better and will probably need to make sure I take it for a while to ensure continued sleep.  In 2004 I was having a particularly bad time with sleep and insomnia.  A quote from my book:

“Sleep which had begun to get better was out of control.  I would fall asleep late, wake up at 4:00 a.m. unable to return to sleep.   Most of the time I would be awake all day and through the next night and day before I could sleep again.  This was a regular pattern.  I would be up for sometimes thirty-six hours before I would sleep eight.”

In 2004 I had begun being sent to medical appointments for the defense in regard to my workers’ compensation claim.  Sleep problems had become a way of life since  becoming ill but thought I had gotten them under control.  The stress from the illness, the appointments and my fear of the future had taken hold.  This pattern of sleeping eight hours and being awake for sometimes 36 continued for quite some time.

The Beginning

You don’t have cancer.  Those words still ring in my ears.  That is what my physician told me.  They were meant as words of encouragement in reference to my hysteria at being so sick and having no real answers.   It was true, I did not have cancer.  I don’t think my doctors at the time realized the scope of my illness.  I had been handed a life sentence to something that few around me knew much about or could completely comprehend how devastating it would be to me.

The year was 2001.  I had already been sick since August 1999 with recurrent sinus infections that would not respond to antibiotics.  I began to become ill shortly after returning to work following being a stay-at-home mom for eighteen years.   I was 44 years old when I became ill.  My life was never the same after that.

New Title

Anyone who has recently visited my blog will realize that the name has changed.  The content and discussion will be the same.  My book title has been finalized and reflects the name of this blog.