May is Multiple Chemical Sensitivity Month

The Month of May has been dedicated as Multiple Chemical Sensitivity (MCS) month.  I suffer from MCS (also known as Environmental Illness and Chemical Sensitivity). I did not always have MCS.  I was a very active and busy stay-at-home mother of two.  I was active in their school, their activities, as well as in our community.  I lived by my at-a-glance calendar to know when and where I was supposed to be at any given time on any given day.  I sewed and did craft fairs. I baked and canned, and did things with my friends.

My MCS began after a mold exposure in my work place where it first manifested itself in severe sinus issues and brain issues (although I didn’t realize the brain issues were happening in the beginning).  My boss would bring a phone message that I had written and placed on his desk to have me explain it to him.  I remember many times writing a message and then realizing it was sloppy or didn’t make sense and redo it.  The sad thing is that even then the messages would not make sense.  Yet I still had no idea my brain wasn’t functioning correctly.

I didn’t know what was wrong with me or why I was constantly getting sick.  It took nearly a year to discover that there was mold in the office and and a few more months before my ENT could get mucous taken from my sinuses to grow in a culture plate. I rapidly began reacting to all sorts of medication and developing food allergies.  The chemical sensitivity took a little longer to rear its UGLY head.  When it did, I was shocked.  I had seen others where the masks and walk around in a daze but that wasn’t me!  At least that is what I kept telling myself until it was me and there was no escaping it or denying it. Mold isn’t the only thing that can  push someone into “MCS or environmental illness land”.  An extreme exposure to pesticides will do it.  An extreme exposure to chemicals in the workplace can do it.  Slow but steady exposures to chemicals can also eventually cause someone to become sensitized to chemicals.  How much is too much?  There is no answer to that.  Everyone reacts to different levels of a chemical.  Not everyone has the same toxic load already before being exposed. Do people think we are crazy?  Do they think it is all in our head?  There are some that do.  Sadly there are family members who condemn their own brother or sister or mother for having a sensitivity to chemicals.  They truly do not want to accept that this condition actually exists.  For if this exists, they may have to change their habits to avoid causing further illness to their family member.  I have seen husbands leave their wives over this illness.

The isolation that MCS causes is dark and lonely.  Very lonely.  For that reason I chose many years ago that I would begin writing my story.  I would become an advocate to the best of my ability. I started by writing my story which is now available (Allergic to Life:  My Battle for Survival, Courage, and Hope).  A link to purchase is in the sidebar.

Throughout the month I will be reblogging posts from some of my fellow bloggers who are also posting about MCS Awareness month. Last month I celebrated my 2 year Blogiversary.  As a celebration, I began a giveaway on Rafflectopter.  I several items included in the giveaway.  Take a moment to click on the link and enter the giveaway which runs through the end of May.

What’s in My MCS Emergency Kit?

Not too long ago I read a post about having an MCS Emergency Kit.  The link was posted on sondasmcschatter.  The link connected me with myhealthmaven.

The topic of the post intrigued me so I took a look.  It made me think about what I have as an emergency kit.  I flagged the post and decided I would write more on it at another time.

The hints were to always check your emergency kit to make sure it has everything, to keep a note in your wallet or purse about your illness and reactions (I use a Medic Alert bracelet.), to have an emergency list of contacts (in my cell phone and through Medic Alert), and to be sure all these items are accessible.

What’s in My Emergency Kit

A TYVEK SUIT  (to use if a building I need to enter is suspect or if I accidentally get exposed I can cover my clothes until I can get home and remove them in the garage).  The site listed a change of clothes.  Once I have been exposed trying to find a safe place to change those clothes or to have the clarity is not always possible.  It is much easier to throw on the suit.

LARGE BLACK GARBAGE BAGS to put items in that may have been contaminated  (which once was my purse and shoes because I couldn’t cover them with a  tyvek suit).   They are also great for my passenger’s items that need to go with them.

SMALL GARBAGE BAGS for items that need to be covered to protect me but are too small to use the larger bags.  Once a garbage bag came in handy to cover my daughter’s hair.

MASK – I carry one in my purse but usually have a spare one in the console compartment.  I have been known to use my mask, stick it in a pocket of my jeans and forget to take it out until doing laundry.  I have gone to a store only to have to turn around and go home and get my mask or sit in the car and let someone else go in for me.

HISTAMINE – I carry a pouch in my purse with a vial of histamine, syringes, and an ice pack to keep it cool.

EPI-PEN – The histamine usually is all I need for a bad a reaction but the epi-pen is my back up just in case.

VITAMIN C – I usually have some in my purse but try to keep a small bottle in the car just in case.

ALBUTEROL INHALER – Sometimes the coughing becomes so bad that I need a little extra help with my lungs.

WATER – I keep a glass bottle of water with me at all times.  I use Mountain Valley Spring Water in glass.

The site also mentioned what to do after an exposure.

CLOTHES – I come home, remove my clothes, and put them in the washer with baking soda, my safe laundry detergent and sometimes powdered milk.  I let them soak for a while and then wash.  If I also had on a tyvek suit, it needs to be tossed in the garbage.

SHOWER – I shower to remove as much as I can from my skin and hair.

REST –  I also have learned that eating often helps get the metabolism going and help eliminate things from my system faster.

SUPPORT – If the reaction is very bad, I schedule an appointment with my acupuncturist and also try to schedule an IV of Vitamin C, Glutathione, and Magnesium.

I would like to thank my healthmaven for writing on this subject and sondasmcschatter for sharing it.

WHAT’S IN YOUR MCS EMERGENCY KIT?  

May – an awareness month for many

May is National Awareness Month for MCS (multiple chemical sensitivity).  I learned this fact last fall when the Jennifer Parker Foundation was announcing it’s plan for a Walk Across America to raise awareness for MCS.  The walk is scheduled for this coming Friday, May 5th, 2013.  I had signed up with all intentions of organizing a walk in my community. Too many things began to conspire against me doing this (trying to get enough support, the winter weather making meeting with organizations outdoors to begin to raise awareness about this walk and our cause was impossible, and my book progress was lagging behind and I needed to focus everything on it).  Next year I hope they do another one and I can participate.  I am finally feeling human and like I have a brain of sorts.  I hope to do a proper MCS Awareness post soon.  Other bloggers I follow who speak on the topic of chemical sensitivity are:

mcsgal at Sensitive to Chemicals

sonda at sondasmcschatter

miche at The-Labyrinth

The Allergista

Jennie at Jennie Sherwin

 

I also learned today that this is Ehler’s Danlos Awareness Month too through my fellow blogger Katie at Connective Tissue Disorders:  My Journey.  You can read facts about Ehler’s Danos disease fact #1 here.

May is also Celiac Awareness fact that I learned from another fellow blogger Molly at A Sprue Story.  Amanda at Celiac and Allergy Adventures also writes about her adventures with Celiac Disease along with Kim at Gluten Nazi Mom.

I became curious what other mostly Invisible Chronic Illnesses had an awareness day in May and discovered  this is National Toxic Encephalopathy and Chemical Injury Awareness Month (This was part of my diagnosis).  Learn more here.  I had not heard of this organization before but plan to check it out in more detail.

In checking I also learned this is National Asthma Awareness Month and I have received quite a bit of information from The Grateful Foodie on this topic.

It is Lyme Disease Awareness Month.  Christine at Bored Sick suffers from Lyme Disease..   You can also read about it here.

It is Lupus Awareness Month

If anyone reading this post has a blog that addresses any of these topics, please let me know via comment so that I may include them in an update.  If I have left any of you out who follow me, please forgive me.  I will gladly update this post and include you.

I hope all of you will take a few minutes to check out these amazing blogs.

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.

My Childhood

I had a pretty normal childhood.  I was the older of two girls.  My sister was asthmatic and spent a lot of time when she was very young in and out of the hospital.  I think what she went through made it easier to understand what I have gone through and allowed her to be such a supportive person in my life. 

My mother worked out of necessity.  I guess my sister and were what is today called Latchkey children.  We came home from school, let ourselves in, phoned mom to let her know we were home, and were then expected to do our chores and homework.  We had our share of catastrophes.  I mention this because I want to emphasize that I had a normal life without any real illness until I was exposed at work.  In my book I talk about my childhood in more detail but want to share this short snippet.

I had my share of emergencies ……The most memorable catastrophe involved our pet goldfish.  I was changing the water in the bowl and had dumped the fish into the sink so I could clean the bowl only to discover that I had forgotten to put water in it.  I immediately filled the sink up but the poor fish wasn’t moving very much.  In a panic I phoned my uncle and asked a simple question, “How do you tell if something is dead?”  Now my uncle had a severe heart condition and immediately thought I was referring to my younger sister.  He said he was on his way over and hung up the phone.  Boy did I hear about it when he got there and realized I was referring to my goldfish.

Why is that lady wearing a mask?

Me wearing my mask.

I have watched as little children innocently ask their mothers this very question. The answers vary from a mother suddenly noticing that I have a mask on and answering I don’t know to a mother replying maybe she is sick and doesn’t want to get us sick. My chemical sensitivities are such that to be able to go into the grocery store for a short period I must wear a charcoal mask to lessen the severity of what I breathe in and lessen my reactions to those chemicals. I have had people see me and suddenly veer off in a different direction for fear that I could spread some dreaded disease to them when in fact they are the ones I am protecting myself from (the cologne, laundry soaps, fabric softeners, etc.). When I was in Dallas in 2003 a friend and I who also wears a mask had made an excursion to  window shop at a store we had seen that had very nice clothes in the window.  We decided to stop because she wanted to see if she thought she could tolerate the clothes or if the store would be too fragrant for her to be able to get the smells out of the clothes.  I write about this in my book. 

By this time Lisa had begun gaining weight and needed clothes.  We had driven by this store that featured clothes in the window that she thought might be safe for her.  We decided to stop by there one morning.  So here we were both in our masks knocking on the door to get the clerk’s attention.  We finally got her attention and asked her to come to the door.  We wanted to ask her if she would be willing to bring something out for us to look at.  She cautiously opened the door; the whole time she kept looking at us in our masks and back to her register.  I think she thought for sure that we were going to rob her.  When we explained why we wearing the masks, she was very accommodating.  There was also a time when we were standing outside another store waiting for a clerk to bring something out and a man approached us and asked why we were wearing masks.  We tried to explain it to him.  So, he said you are allergic to perfume and we just said yes.  As he walked away he asked if we were sisters because we both had on masks.  That generated a good laugh by both of us.

The mask presents many issues.  In winter it causes my glasses to fog up.  In warm weather the heat from wearing the mask is so stifling that I feel as if I could pass out.