Housing Rental/Buying a Home for the Chemically Sensitive

I just read a blog by Anaphylaxing on Housing Rental for the Chemically Sensitive. In her post (http://mastcellactivation.blogspot.com/2013/01/house-rental-for-chemically-sensitive.html?showComment=1357836487912#c5550117704868306674) she lists 14 points that must be met when renting a home to be safe for her. I find that the same points also apply when looking to buy a home.

My husband built my safe home in 2003 while I spent most of that year in Dallas at the Environmental Health Center-Dallas. My medical bills were racking up pretty quickly and I was in a fight for my life and a fight with workers’ compensation. The only option we had was to build on a lot that we had purchased many years before. I am doing great in my home but this isn’t the place where I want to be forever. The neighborhood is not the greatest and seems to be deteriorating some. I miss my old house with its 2500 square feet of spaciousness and the acre and a half lot it was on.

We have talked a lot about buying a home somewhere else and renovating it to fit my needs. The first house I was going to actively look at was a disaster. We me the realtor on the yard in front of the porch. I told her that if I detected anything when the door was opened, we wouldn’t be interested. She opened the door and I immediately got hoarse, had chest pain and got that tremor feeling I get with mold. I told her there was mold in there and my husband wouldn’t be going in either. She said well there is a smell but I am not sure what it is. My husband replied that if I said there was mold, there was mold. She then asked a realtor that had just been in the house who said there was a little in the master bathroom at the back of the house. As any of you know who have been around mold or know about mold, it would take more than a little in the master bathroom at the far end of the house for me to have a reaction when the front door opened.

My husband and I tried again recently. As soon as we got to the front door the odor of candles and air fresheners hit me like a ton of bricks and I began coughing up a lung. I let him quickly walk in but told him that again the house would have to be gutted to make it safe for me (new sheet rock, carpet removed, tile/grout replaced and the hvac ducting at the very least would have to be replaced. The housing market has started climbing here again and the chances of getting a house priced so that we could afford to almost gut it is very unlikely. Our only real chance to get to a different area would be to buy acreage and build again. This is something my husband does not want to do and something I don’t want him to have to do although starting from scratch is easier than removing and replacing.

It looks like I am not going anywhere anytime soon.

Who would I talk to if my office is making me sick?

This query was searched and brought someone to my blog.  Who would I talk to if my office is making me sick is a very good question.

When I was constantly getting sick and before we had any idea what was going on my boss had our office tested.  Of course the person who came in and tested said there was no way all my infections could be related to the office.  The results came back in with moderate amounts of mold.  Again, they felt there was no way that this could be making me sick, yet a few months later we found that fungi was growing in my sinuses.

My answer is that if you believe your office is making you sick you need to first contact your boss.  You may need to contact a health and safety person if your company has one.  You may need to check with the maintenance department to have your office tested for mold.  Or you could buy a simple mold test plate from a home improvement store and do a quick test. Of course, you may also need to do blood tests yourself to determine if you have unusually high IGE reactions to any molds should the office test come back positive.  I was lucky that my boss had the office tested but the district felt that my hypersensitivity to mold and the moderate count in the office could not have been making me sick.  Yet, they offered to move me to another school.  The fight was on!  A very long and hard fight.

Can you cross contaminate your car when you leave your moldy home?

Can you cross contaminate your car when you leave your moldy home?  This was typed into a search engine that eventually led someone to my blog.  My answer is  yes from my own experience.  In fact the car was already most likely cross contaminated while he/she was living in the moldy home. The reason I say yes is because the mold spores and the mycotoxins produced by the mold become airborne.  They settle on your clothing and they settle on the carpet and you walk on it with your shoes or socks.  It also settles on your furniture and is picked up on your clothing as well.   You then get into your car and the spores that are now on your clothing become airborne in the car.  Those spores and mycotoxins attach themselves to the fabric in the car and go through the air conditioning system.  I got my mold/mycotoxin exposure in the work place.

I got rid of my car and everything  that had porous or soft surfaces.  I also got rid of all appliances, etc that had a fan that might have sucked in the mold/mycotoxin and would emit it again when the fan was turned on.

Depending on a person’s sensitivity I guess would depend on whether or not they would be able to be in their car once they get rid of everything else.  I tried being in my car after I had gotten rid of my things and it made me feel ill.  This is a decision everyone with mold exposure has to make and it is based on what does/does not make them feel worse.

For others who have suffered mold exposure.  What have you done with regard to cross contamination and your car?

NOTE:  I am speaking from my own experience and that of a few fellow mold sufferers.  Everyone must make their own decisions on what they should do.

Provocation/Neutralization Part 2

I returned home from Dallas on December 22, 2003.  By the spring of 2005 my neutralizing end points were giving me trouble requiring a return trip to re-test some things.  When I returned to Dallas in 2005 to once again re-test my neutralization end points , I had not realized how much more I had unmasked after spending over a year in my safe house.  My neutralizing dose numbers were getting higher (the antigen itself more diluted) showing a higher sensitivity.  How could that have been?  Dr. Rea felt that I was too sick in 2002 to show my true sensitivities because my immune system was in such a mess and in 2003 I had undergone two major surgeries once again messing with my immune response.

Not only were my neutralizing end points changing but  I was having a more and more difficult time in the testing room.  My mold sensitivities were especially heightened.  There were new patients who either did not yet know that a mold exposure might be their problem or they hadn’t yet been told to get rid of their things.    If they walked by me or sat down next to me, my body would go into reaction.  In my book I write:

Monday morning I spoke with Dr. Rea about it. He said that my body had become very sensitive, and that I would have to be careful until I went home. The reactions became more and more frequent. I could be sitting in the testing room in the middle of a test and a patient would walk by me in the room and I would go into tremors. Once the tremors started, I would have to be given histamine and stop testing. Sometimes I could resume testing later in the day and sometimes I would have to give up for the day.

How was I going to get home if I could not test? Dr. Rea suggested that I try testing in the “box” for a day and see how I did. The box was a glass-enclosed room attached to the testing room. The tester could come in and inject me with my antigen and then go back in the other room and continue testing. He was able to see me if I was having difficulty, or I could just wave and patients would see my distress signal and send the tester into the box with me. Tuesday morning I made sure I had a bagel and my book. I was going to hole myself up in the box for the entire day. I would not leave to have lunch in the hallway with the others. If I did and had a reaction, I wouldn’t be able to test in the afternoon. By the end of the day, I had tested four things. I was making progress but realized it was going to take a long time because my body was so sensitive that it took a long time (sometimes an hour or more) to get a single end point finished.

I phoned Rick that night and told him how well I had done. Then I had to break the bad news to him. It would cost $50 a day to reserve the “box.” Finally, we agreed that we did not really have much of a choice. Either I paid the $50 or I risked a reaction and never getting my testing done. Also, the more I had these tremor-like seizures and reactions, the weaker my body would be and the more difficult testing would be.

Testing in the box was lonely! I was totally isolated from everyone except my tester and Dr. Rea from the time I arrived at 9:00 a.m. until I left around 4:30 p.m. I was in a fishbowl. I could watch the others in the testing room through the large window and see them laughing and carrying on conversations but I could not hear them. This made me feel incredibly sad. Outside of the center I kept myself safe. Liz was the only one I allowed into my place (or in the “box” with me). I also did not go to dinner with the group on Saturday if new patients were going. I continued to hand wash my clothes daily. I avoided anything that would possibly cause me to have a reaction. With all of these precautions, life was lonelier but testing was made easier.

My original three-week timeframe was extending itself weekly.

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.

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.

Out with my clothes again!

On March 1, 2004, I wrote a sad note in my journal: “I have to detox again and throw away my clothes…. I am all alone, she said—No one can enter my world—I speak but no one understands—no one listens—I tell them no mold—and they let me step into it anyway—I am all alone, she says—In my sterile shell of a house—only come in if you dare—adorn a suit of white vinyl—mustn’t make me sick—the woman sits all alone—looking out her window—watching….”

I wrote this shortly after having a bad exposure at a defense doctor appointment.  I was so tired of being sick, being made sick and having to get rid of my clothes and start over.

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.

Could My Office Be Making Me Sick?

While I was in the midst of my six weeks of antibiotics, my boss began to wonder if the office could be making me sick.  The office was tested and there was moderate growth of several species of mold.  Yet the tester didn’t believe it was making me sick since I had at first been presenting with sinus infections and we had yet to get fungus to grow out of my sinuses.  (I have learned since that fungus is very picky and sometimes will not grow in the culture plates every time.)  I had not been sick like this until after starting work in this building.

Meanwhile as I sunk deeper into depression I was sent to a doctor in the Bay Area because a RAST test had shown very high allergies to mold and some foods.  I couldn’t believe my ears when I was told that I had to quit eating many of my favorite foods including chocolate, soy sauce (there went my Chinese Food lunches with friends), corn and wheat (Practically everything has some form of corn or wheat in it.)  What was I going to eat?  Was I expected to learn to make foods without all these ingredients?  As the depression got worse I phoned a friend.  From my book:

I began phoning a friend who was a grief counselor.  I talked to her quite frequently.  What was wrong with me?  Why did I feel so bad?  I had never felt like this before.  I just couldn’t quite put my finger on how I felt but I knew that I was in pain.  It wasn’t like the pain I had in my face.  I hurt deep inside and felt empty.  I felt that there was no end to my being sick and that no one could really understand what I was going through.  I told my friend that I now understood what drove people to suicide.  I had never and was not now contemplating it but understood how they must feel.

I had been crying a lot and Dr. Spitzer put me on an antidepressant in hopes of stabilizing me.  He also wrote a note stating that I needed some time off from work to allow the medication to work.  I felt better for a while and had more energy.  I cleaned my house like a wild woman.  The wonderful feeling didn’t last long and surgery number three happened August 1, 2000.  Three surgeries in nine months!

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.