If the coastline can be environmentally sensitive, why can’t we?

As I have talked about my illness and being environmentally sensitive, I have also talked about how many do not understand how things as simple as a cleaner or shampoo can do so much harm to me.  When we were at the coast recently, I came across this sign posted along the boardwalk on the ocean.  So my question is, if the coast can be environmentally sensitive and we cannot walk along the area and destroy the habitat, why can’t we be environmentally sensitive to all the chemicals that are being put into our air space and our clothes?

I had planned on writing so much more about this topic but my brain is not processing words today.  The harder I try, the more rambled the text was becoming so I am going to just stop here.  It may have to do with getting my IV today with Vitamin C, Magnesium and Glutathione.  These IV’s tend to push toxins out of my body and maybe causing the chaos I mentioned.  I am going to take a break for a day or two and then I will be back.

Answer to 25 Questions About Allergic to Life

I recently read a blog post by www.runfastmama.com  where she posted 25 questions and answered them to share more of herself to her readers.  She invited other bloggers to post and answer the same questions for their readers.   A reader of this blog also asked if there was more about my illness than what is on my “about” page.  I will try and either update that page and share more information on how this illness affects me or write a post.  Here are my answers to 25 questions.

Question 1: Do you have any pets?  No

Question 2: Name three things that are physically close to you:  A draft copy of my book, an empty cup of tea and my rolodex.

Question 3: What’s the weather like right now?  Hot and about 93 degrees.

Questions 4: Do you drive? If so, have you crashed?  Yes I drive and have crashed my car.  Neither time was it my fault – and uninsured motorists.

Question 5: What time did you wake up this morning? 7:00 a.m.

Question 6: When was the last time you showered?  This morning.

Question 7: What was the last movie that you saw?  Crazy, Stupid Love on DVD because I can’t go into the movie theater with my chemical sensitivities.

Question 8: What does you last text message say? Dad looking for sand crabs.

Question 9: What is your ringtone?  Something guitar.

Question 10: Have you ever been to a different country? No – I always thought I would do that when my children finished school.  Instead I got sick.

Question 11: Do you like sushi? Never tried it.

Question 12: Where do you buy your groceries?  Whole Foods

Question 13: Have you ever taken any medication to help you fall asleep faster? Melatonin and 5htp

Question 14: How many siblings do you have? One

Question 15: Do you have a desktop computer or a laptop? Desktop

Question 16: How old will you be turning on your next birthday? Younger than 60.

Question 17: Do you wear contacts or glasses?  I wear glasses now because I can no longer tolerate the materials in contacts.

Question 18: Do you colour your hair?  No.  Sometimes I miss that and other times I feel liberated by not being bound to the constraints of keeping it up.

Question 19: Tell me something you are planing to do today:  Go to the ocean – actually already went and am back home.

Question 20: When was the last time you cried?  Not sure

Question 21: What is your perfect pizza topping? When I could eat pizza it was pepperoni and pineapple.

Question 22: Which do you prefer, hamburger or cheeseburger? Cheeseburger – with provolone or mozzarella (can’t have aged cheese because of mold allergies and intolerances) with tomato and onion wrapped in lettuce leaves (can’t have bread because of yeast).

Question 23: Have you ever had an all nighter?  Not in the usual since of the word.  I have  had periods of time when I literally could not  sleep for 36 hours or more.

Question 24: What is your eye color?  Hazel

Question 25: Can you taste the difference between Pepsi and Coke?  At one time I could.  Doubt if I could now.  Not a soda drinker any more.

Me in the beginning

I have been talking to you about how ill I was.  I have shared excerpts from my soon to be published book.  You have seen a picture of the me now – 12 years out from the beginning of my illness.  For you to understand how far I have come even though I am far from over this illness, I have decided to post this picture.  The picture was taken in February 2002 on the day I arrived at the Environmental Health Center in Dallas.  I was taking nebulized Amphotericin-B through my sinuses for a continuing fungal infection and possible osteomyelitis.  I knew I had lost weight and until later when I looked at this picture didn’t realize how skinny I was and how sick I truly looked.  I had been sick at this point for about 2 1/2 years.

Back Cover Photos

One of my possible back cover photos

This is one of the photos that I am looking at as the photo for the back cover of my book:  “Allergic to Life:  My Battle for Survival, Courage, and Hope”.  I am thankful that my daughter’s boyfriend is an excellent photographer and editor. I may try to post more in the next few days.  I am getting so much closer to finally submitting everything.  I still need to get the cover photo done (and we are working on a design idea) and two inserts from my daughters.  The final reread is happening now.  The whole book as been printed in book format and I have started going through it for what I hope is the final time.

When lifetime medical means nothing.

I worked long and hard to win the battle in my workers’ compensation case.  After years of battling I was awarded lifetime medical.  Finally, I thought I would be able to work toward healing without stress of the huge financial burden I had been under for so long.  I would submit my self-procured medical expenses and I would be reimbursed.

I had no idea how long things take in the workers’ compensation world.  I would submit my bills in a timely fashion once a month only to wait months and sometimes nearly a year to get reimbursed.  I had hope because I was awarded the medical and would just have to wait and fight to get reimbursed on time.  Things were starting to go smoothly and wham another obstacle was placed in front of me.  My case had been handed over to a different insurance carrier who decided that they shouldn’t have to pay for all the things the previous insurance carrier covered.  We fought again and again.

It wasn’t too long after that  when yet another insurance carrier now had my claim and was refusing just about everything at that point.  We fought and fought utilization review with letters and fought in court.  Finally we agreed for me to see an AME (authorized medical examiner).  This doctor would review my records and meet with me.  He would become the final say in my treatment and if the insurance carrier denied anything, it would be sent to him for approval.  My treatment expenses would no longer have to go to utilization review and it would save time in getting  me reimbursed.

That was the final blow to me regarding my lifetime medical care.  This doctor denied my seeing my environmental doctors and he denied my seeing my ENT who has been in charge of a lot of my care since I first became ill.  I was then told that I needed to see a traditional doctor who was board certified in allergy and immunology, possibly an infectious disease doctor, a different ENT, and as you might suspect a psychiatrist.

What this all boils down to is that if I want to continue my LDA (low dose antigen) therapy, continue seeing my environmental doctors, continue seeing my ENT, doing my B12 injections and Vitamin IV’s and quit speaking to my therapist in lieu of a psychiatrist or clinical psychologist, I must foot these bills  myself without expectation of any reimbursement.

So lifetime medical now only means lifetime medical if I give up what is making me well in exchange for what the AME wants me to do.  Tough decisions are going to have to be made and I am still deciding what I am going to do.

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?

Worker’s Compensation?

Shortly after getting the results back from the testing of my office, I decided that I should file for worker’s compensation for all the time I had missed from work, reinstatement of my comp time I had used when my sick leave was exhausted and help with my medical bills.  I met with the head of our Human Resources Department who told me that the district was not liable for my illness because of a sensitivity to mold.  I began making phone calls and found out that it was not his decision;  anyone has the right to file.  I filed in September or October 2000 and met with the district’s worker’s compensation doctor in December.  To me the appointment was a joke and I wasn’t surprised that in January I had been denied.

I met with the first attorney shortly after my denial.  The attorney told me that it would cost more to take on my case than he thought I would get.  My husband and I went home defeated.  I thought well maybe things would turn around and I would just get well and I wouldn’t need to file an appeal.

In the fall of 2001 my time was running out to file my appeal.  I had contacted several attorneys and their response was that they just didn’t understand mold.  If I had some tangible injury such as a broken back, loss of limb, they might be able to help me.

In the meantime I was getting sicker and sicker.  I filed the appeal on my own and went to court.  The judge had sympathy on me and gave me 90 days to find an attorney.  I kept up my search and found a wonderful man to represent me.  In January 2001 I told my doctor that I had found an attorney.  His response, I found you a doctor.  The doctor was out-of-state.

What I discovered is that the fight for worker’s compensation is a long and very hard fight.  You need a very good attorney who believes in you and your injury and is willing to fight to the death on your behalf. I found such an attorney.  If you are fighting the battle, don’t give up.  Keep searching for an attorney that is truly on your side.  If he doesn’t understand and isn’t willing to learn then move on.

It’s Not a Reaction, It’s Your Fear

It’s not a reaction, it’s your fear.  I recently had a doctor tell me this when I was coughing and coughing over an injection.  I was not having a reaction; it was just my fear that was causing the problem.  Even more recently I was told to just quit wearing my mask unless it was windy outside or if I was in the detergent aisle at the grocery store.

I wonder how many there are of us out there that run into that kind of comment.  Last night was a good example of how it could not be fear.  I was in my office talking on the phone and my husband walked in to put something away in the desk.  I immediately started feeling bad (my husband is usually very careful not to cause a reaction for me) and then the coughing started.  I hollered at him in the other room.  “What did you do?  What do you have on?”  His response was that he had put on some powder that was Aloe and Vitamin E.  He didn’t think it smelled.  I had to tell him that Aloe and Vitamin E weren’t the only things in that powder and that I was sick.  I had to take my histamine injection to help shut off the reaction and stay in my bedroom while the air filters did their job.

If I were to tell the doctor this, would he still say it was my fear?  I don’t think he would still understand my sensitivities to these things.  How could it have been fear if I had not known anything was happening?  I have been fortunate in the majority of my medical care in this area.  My doctors have seen first hand what happens when I am exposed to chemicals.

I know many of you are fighting the same battle, looking to survive, and hoping for a solution.  The battle of convincing the medical profession that you truly have a sensitivity to chemicals, convincing well-meaning friends or maybe even convincing your family.  I want you to know that I truly understand your battle.

Isolation

“I pray to God for answers. I ask for His support and encouragement. If I have to live in this pain, in this bubble, in this life of isolation and loneliness the rest of my life, I don’t know what I will do.

Recently I was in contact with a friend who is also a mold survivor.  We talked about this blog and topics that should be covered other than excerpts from my book.  She asked if I was going to talk about Isolation.  I said that I had considered it as one of my topics.  In fact isolation seems to be a general topic and matter of woe among fellow mold sufferers and those suffering from Multiple Chemical Sensitivity (MCS).

I soon began to realize that once my life had changed and I was no longer able to attend indoor functions, be among large crowds, go shopping or out to lunch, I also wasn’t being called or visited.  A majority of my treatment took me far away from home to Dallas, TX.  The longer I was there, the less I heard from others.  It was hard going through all that I went through by myself.  I thought when I finally came home, I would be totally well and everything would be the same as it always was.  I soon began to realize what it must feel like for a soldier to return after many months away at battle.  In my book I write:

I also began realizing what soldiers must feel like after returning from an extended tour of duty. How do you assimilate back into your life? Things keep going on and moving forward but you aren’t there to participate in the moving forward. People carry on conversations but you feel like you were dropped in the middle of a story without access to the beginning. So you just sit there, and you listen but don’t speak.

Things were different when I returned home.  I was still sick and still not able to visit in the homes of friends or go out.  So much had happened after being gone for almost a year (2003) that I felt lost in conversations.  Someone would talk about something that had happened and I wouldn’t have the faintest idea what they were talking about because I hadn’t been there, hadn’t been involved in life at home and hadn’t witnessed changes that took place.  In this depressed state I wrote:

Life Passes Her By

She sits and stares out the window and she doesn’t recognize anything

Life has passed her by and nothing is the same

Where was she when all this happened?  She was here but

Life passed her by

Buildings were built and buildings were torn down

People arrived and left;

People were born and others died

Life passed her by

People divorced and others married;

People found new jobs and new hobbies

Where was she—she was there but she did not participate in life

It passed her by

She reaches out but touches nothing;

 Life is just past her grasp

She stretches and bends and tries again

But life passes her by

She talks to people but it is a jumble to understand what they say

The life she missed is just out of her reach

Life passed her by

I learned through a lot of therapy that there were things I could do to try to lift myself up from the loneliness and desperation.  In another post I will talk about things I and others have done.

Mold Free Diet

I mentioned in an earlier post that I had to give up chocolate and soy sauce.  I was directed by my doctor that I needed to be on a mold free diet.  When he explained it to me I couldn’t believe all the foods that I should give up.  I was informed that after having a mold exposure like I had it would be wise to also give up foods that could contain mold.  This diet included giving up all fermented products, most processed meats, concentrated fruit juices (as juices could be made with older fruit that could not be sold in the market), breads because of the yeast and aged cheeses.  I also discovered that I could no longer drink my regular black tea but would have to substitute it for green tea which I have since learned to like.

I learned as time went on that the mycotoxins that had invaded my body had left their mark as well in the form of severe food allergies.  I will write more on this and the rotation diet I followed.

For a more complete list of these foods, you can view the mold help diet at www.mold-survivor.com.   This diet is an adaptation of the diet from my doctor.