Category Archives: Sick Buildings

Her Speech on Housing and MCS

Most of you who have followed my blog for any length of time know that I often mention Michellina from the-labyrinth.  Miche had the wonderful opportunity recently to give a speech on MCS and Housing at an event called The Good House Dinner.  Please read Miche’s speech and learn of her journey.

Can Perfume Make You Sick?

For most of you who follow my blog, you already know my answer to this.  You have heard me talk about it many times including a post I wrote, Layers of Fragrance.  From the time a person gets up in the morning (and probably more so with women), they are putting layer upon layer of fragrances on their skin and at the same time adding chemical after chemical which is absorbed through the skin.  From the shower products, to the lotions and perfumes, to the laundry soaps and fabric softeners or dry cleaned clothes, and lastly their perfumes or cologne, all those chemicals are slowly poisoning their bodies.

Their answer is that they smell nice and they like the way their shampoo leaves their hair smelling or the lotion leaves their skin smelling.  They haven’t become sick (Or Have They?) so why give up these wonderful delicious smelling products.  I say that they are having health issues that are not sending big signals that they are aware of.  They may be having big health issues that their doctor isn’t able to figure out the cause of so they are given medications.

Thanks to a recent Facebook by my dear friend Jennie Sherwin, I read this article from Prevention.  It just repeats what many of us who suffer from chemical sensitivity (MCS) have been saying for some time.  The chemicals in all these products are indeed making us sick.  Thank you Jennie for sharing this.

 

Catch Up Mondays: Feeling Grateful – revisited

 

 

 

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This post was originally shared on December 1, 2012.  I continue to be grateful for all that I have gained as well as the many new people I have met on my journey.  Since publishing Allergic to Life, I have met many more amazing new authors (some who have dealt with illness like I have and are about to share their stories).  We need to be grateful for what we have and to continue to share our stories and bring awareness to those suffering without support.

My Christmas tree is up and decorated.  While I don’t have many other decorations to put out compared to my “old life” when I had decorations everywhere, my tree is up and for that I am grateful.

Many of my environmentally sensitive friends are not so fortunate.  Some of my friends are not able to have such a tree (real or artificial).   My tree is decorated in all metal ornaments with a few resin ornaments to fill in the gaps.   A very dear friend bought an artificial tree seven years ago and still cannot bring it into her house.  Some of my friends are even less fortunate in that they have no safe place to call home.

I am thankful each day for what I have managed to regain since this merry-go-round of illness began thirteen years ago.   While my life is not what it was before, it is better than I ever dared hope for.  There was a time when I didn’t know if I was going to live or die from all the reactions and infections.   I feel deeply for those who have just started this journey and for those who have been on this journey as long as I have and are struggling daily to survive and find the hope and courage they need to carry on.

To the men and women I have met on this journey, I am grateful to call you my friend.  We have shared tears and anger but we have also shared laughter and joy.  Laughter at finding a way to put some humor into our crazy worlds and joy in each new accomplishment and step forward we make.

What are you grateful for?

Allergic to Life gets a review from The-Labyrinth

I just read a wonderful review from fellow blogger Miche at The-Labyrinth for Allergic to Life.  Miche also suffers from chemical sensitivity, other allergies, and a severe allergy to mold.

I truly appreciate that she took the time to read my book and learn my story of what brought me from a regular woman who went and did what she wanted to someone who became “allergic to life”.  Please take a minute to visit Miche, read her review, and sign up to follow her blog.  Miche writes amazing blog posts and has been a champion for students with disabilities at her university in Australia.

IMAGINE, IF YOU CAN

My friend Miche from the blog The-Labyrinth posted a wonderful and positive post today about accommodations at the university she attends in Australia.  Please take a minute to hop over there and read all the wonderful things that are happening for her and others (because of her) at the university.

Miche has been attending the university working toward her a Diploma in Professional Writing and Editing.  I am so excited for her and all that she has done in spite of her sensitivities.

Catch-Up Mondays – I knew I was Sick But – revisited

This post was first shared here on November 2, 2012.  I don’t even think I have mentioned my entire diagnosis in my book.  My letter with the diagnosis would have been a good thing to have added. 

Someone asked me a short time ago to tell more about me.  Rather than go from the beginning I am going to talk about being sent to Dallas and getting my diagnosis.  I knew I was sick but had no idea how far-reaching the mold exposure had been in terms of my body.

I had been sick for about 2 1/2 years when I was finally sent to Dr. William Rea at the Environmental Health Center-Dallas through my ENT.  I arrived on a cold day in February 2002.   After meeting with Dr. Rea, doing lots of tests and being observed, a letter was written for me to submit to my doctors here and to my attorney for my workers’ compensation case.  Dr. Rea wrote an extended letter and I am going to try to give a synopsis of what he found wrong.

Toxic Encephalopathy secondary to mold, mold toxin and chemical exposure (when I was moved from the school with the mold to a new school being painted, etc. while we were trying to set it up for school to start)

Toxic Effects of Petrochemicals and Solvents

Toxic Effects of Mold and Mold Toxin

Immune Deregulation

Allergic Rhinitis

Food Sensitivity (only safe foods at the time were rabbit, venison, deer, elk, cranberries, acorn squash, eggs, raspberries)

Mold Sensitivity

Pollen Sensitivity

Chemical Sensitivity

Chronic Sinusitits

Chronic Fatigue

Fibromyalgia

Autonomic Nervous System Dysfunction

Multi-organ system dysfunction

Neurotoxicity based on SPECT scan

Hyper metabolic and hyper reactive state

I couldn’t sleep, I was on a nebulized antifungal, I was on so many medications when I arrived.  I would sit and look at the television and it was as if the screen was narrowing and moving toward me (a very strange sensation), my depth perception was a mess.  I would be in the testing room, take a drink my from glass water bottle and then set it back down.  Bam, glass and water would be all over the floor.  I couldn’t gauge when the bottle was on the floor unless I slowly lowered it and listened for it to touch the ground before I released it.  My short-term memory was just that, short-term.  My husband made me walk from our condo to the center so that I would be able to find it because I would not have a car when he went home.  Every morning we would walk the four blocks and when we got to the parking lot I wouldn’t remember where I needed to enter the building and my husband would once again have to show me.  Once in the building when I would leave the testing or exam rooms to go to the sauna, I would invariably turn towards the exit.  I just couldn’t keep my directions straight.  So much goes on at the center.  There is doctor appointments, lab appointments, provocation/neutralization skin testing, sauna, IV’s.  I soon learned that my weekly appointment calendar was my only salvation.  Every Friday I would schedule all my appointments for the next week.  I lived by that appointment book.  It was the only way I could remember where I was supposed to be at any given time as long as I could remember how to get from point “A” to point “B”.

In fact when I returned home after a long stay in 2003 and moved into my “safe” home my memory was still a mess.  One day I got up and put a pot of beans on to cook in the kitchen and then went back into my bedroom.  I still had no furniture in the kitchen or living room.  I pretty much lived in my bedroom with my army cot and blankets, my CD player and my television.  One afternoon my smoke alarms started blaring (all four of them from the entrance to each bedroom).  I began to panic!  MY HOUSE WAS ON FIRE!  Was there a wiring issue?  What was going on?  What would I do if my house burned down?  Where would I go?  I began walking through the house looking for any signs of trouble.  Then as I walked towards the kitchen it dawned on me that I had beans on the stove.  The beans had boiled dry and stuck to the bottom of the pan.  Since that time I have to set a timer whenever I put something on the stove.  The caveat to that is that I have to be within ear range of the timer.  I have turned the timer on and went outdoors only to see smoke coming out of my kitchen vent.

My autonomic nervous system was a mess too.  I would go to bed and the slightest movement (me rolling over or me just moving in the bed) would send me into horrible state.  Imagine being at the top of one of those rides at an amusement park where you are raised to the top and then dropped.  That is what it felt like to me.  And this would happen over and over again all night long.  If I tried to get up and go to the bathroom the mere act of lying back down would set it off.  This went on for months and months.  I haven’t had a severe reaction like that in a very long time.  I still get that sensation occasionally but thankfully it is not my nightly companion.

My life has been turned upside down and inside out.  I say I live in the Twilight Zone or Bizarro Land.  I make the most of what I can do and have to accept my limitations and my losses.  The depression was eating me alive from the inside out and I had to make a decision.  Either I let the depression and loneliness and sadness take over my life or I had to learn to change the way I perceived this invisible illness.  I have chosen to try to change my perspective.  I try to stay positive, I try not to feel envious of what others can or are doing, I try to be grateful for what I have and not dwell on what I don’t have.  When friends tell me they are going on a cruise, or going to another country or on some long weekend, jealousy starts to set in and depression rears its ugly head.  Sometimes it is hard to hear the stories from their trips when they return.  I had been home from Dallas for about a year when my husband had the opportunity to go to England as a chaperone with his high school.  Oh how I was envious.  I wanted him to go, but I didn’t want him to go.  I didn’t want to participate in the plans, didn’t want to hear where he was going, didn’t want to think about being here alone at home with him far away having fun.  Once he was gone I decided that this allowed me the freedom to watch whatever movie I wanted to watch or watch movies all day.  I could sit in my bed and read all day if I wanted to.  I ate when I wanted to.  I got in my car and drove around just for the sake of driving around.  I was good until he came home with pictures from the trip.  Sadness welled up inside of me as he told me where he had gone and explained what he had seen.  I wanted to just bolt.  I didn’t want to hear the stories, didn’t want to see the pictures, didn’t want to feel the sadness.  Finally I realized I wasn’t being fair to him.  He was excited about this amazing journey and what he had seen and done.  I listened and I looked and I put on my brave face.  I have to say, however, that I haven’t looked at those pictures since and hate it when we are watching a movie and he tells me that he has been to that fountain or that museum.  I may be getting stronger every day but the realization that I probably will never make that kind of trip is hard but I am becoming more okay with it as time goes by.

Thank You

I have noticed today that I have several new followers to this blog.  I would like to take a moment to welcome you and say thank you.  Please feel free to comment on blog posts and ask questions. 

You will see that I have a great group of followers who are amazingly helpful as well.

To all of you, both new and long-time followers, I say thank you for wanting to learn more about my story and environmental and chronic illness.  Your support and encouragement mean a lot to me.

Meet The Author

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Yesterday I did a “meet the author” at High Country Health Foods and Café.  I didn’t sell any books but I had the opportunity to speak to others about molds, chemicals, and food allergies.  I had someone talk about family members that had developed cancers and they were sure the environment played a role in it.  I had someone tell me that a friend suffered from something called Chronic Fatigue and I told her that was one of the diagnosis made on me.

The staff at High Country Health were wonderful and while I didn’t make any sales, I felt that I had the opportunity to share about this illness and my story.  I handed out book marks and samples of dish soap.  You never know whether any of this will equate sales through direct contact and conversation or through second-hand contact (something sharing my story with someone else).

Allergic to Life featured in Indies Unlimited

Today “Allergic to Life”  is being featured as a “new release” on the Indies Unlimited website.  I am so excited to have the opportunity to share my story.  I don’t remember how I discovered the Indies Unlimited website but I am so thankful I did.  I have learned so many things regarding blogging and book promotion.  I have met some great fellow authors on this site and received wonderful support.

It is my hope that by sharing my story I am bringing more awareness to the public about the dangers of mold and what life is like living with chemical sensitivity, food allergies, and chronic illness.

I continue to thank all of you for your support in my endeavor.

Perceptions/Appearances/Feelings

This is something I have been talking to my daughter and a few friends about lately.  Yes, I am still sick.  Yes, I can go into a few stores but only if I wear my charcoal mask.  Yes, I can eat out at a few outdoor cafes when they are willing to accommodate all my allergies.   I am upfront about the fact that I have gained a little more freedom and flexibility with regards to being able to dash into Target to pick up a card or item and the fact that I can eat at a couple of outdoor cafes.

Then why do I feel guilty about this?  Why when I see someone I know do I want to hide?  Why do I feel the need to explain my actions (Oh, I can eat here because they have a wrap so I don’t have to worry about yeast, and they will leave out the avocado, and they will substitute the aged cheese for the provolone that I can eat, and I can finally eat lettuce and tomato again.)  For years I have been so severely sick and at times thought I was dying.  Now that I have some freedom why should I feel like I am being deceitful when I am out doing what things I can finally do again?

I have been wrestling with these feelings for a while now and I can’t seem to get rid of them.  I think it is even more apparent now that the book is out there chronicling my journey and my life is out there as well.

I think it is time for an appointment with my therapist.  I should be rejoicing in the newfound things I can do and not feeling bad about being able to do them.

My question to you:  Have or are any of you going through this yourself?