I knew I was sick but

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.

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4 responses to “I knew I was sick but

  1. Kathy, as always ….your story continues to amaze me but not as much as your attitude about it all does! Yet….I do get it….I too have learned to be thankful for the things I can still do, food that I can still eat, and the few things I still have…etc…no other illness I have ever heard about takes so much and leaves so little of life still the same for those who have it.

    The hardest part that remains for me is that I have received so little validation now of my illness and loss from those who professed to care about me when I was healthy.

    Think of this….a loved one dies….there’s a visitation and a funeral where those who are part of our lives come to validate our loss in words of love, concern, and by doing this they confirm and validate their acceptance and belief of our terribly painful loss and it becomes a reality for us…not bizaro land so much once we are accepted and understood in the new perameters that now define us.

    How cruel….as no one would dare to tell you that you are crazy and it’s all in your head that your loved one lies dead in their coffin, whether it is open or closed….yet those of us with mold exposure and its symptoms are more often than not believed….not comforted and remain in “bizaro land” emotionally on top of our physical losses.

    Keep posting my friend….as you keep healing my layers and layers of things stuffed down that were too painful to deal with when my exposure first happened!

    • Patricia

      I am glad that hearing my words is helping you through your recovery. Mold illness is devastating. You are right. It is not the same as someone with cancer, a well known and understood illness. People may shy away from a friend who has cancer because they don’t know what to say to them but they understand the illness. It is so difficult for many to “wrap their head” around our various disabilities and limitations. I have lost friends or rather they have stopped calling and don’t come by. After all, who wants to wear a tyvek suit in the middle of summer to be in my house? Who wants to wear a one-size fits all suit that either just does fit or is too long and baggy? We still have family who will do it and a few couples that will do it. In fact, tonight we are having friends over for dinner and cards. I will be dressed in jeans and a t-shirt, they will be dressed in white tyvek suits but they are ok with it. I am blessed to have the friends that have still hung around and done what it takes to be in my home. My home is my only safe place and to keep it that way, they wear the suits. For those just finding this blog, I wrote a post titled “Tyvek – this mold survivor’s best friend” which was posted on July 23, 2012.

      Patricia – stay strong my friend. I am validating you and your illnesses. I hope I am validating others every day on this blog.

      Kathryn

  2. I can totally relate to the envy of traveling. Oooh it really sets me off. I had no idea you had fibro and chronic fatigue, and I am so sorry to hear it. Hugs to you, and thanks for sharing your story.

    • I have been fortunate that my fibro haas not been as bad as many others. I have had pain in my back now for about two weeks along with my shoulder and legs. I have also had my fingers hurt. So I might be having a flare up right now. I am getting an IV today which includes magnesium. Magnesium usually helps me with muscle pain. I do need to ask more of others with fibro. I have someone who suffers greatly and would like to know what they do holistically.

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