Saturday, April 30, 2011

How I Got This Way - Phase 5

Chapter 5:

Well, I took everything that Dr. Smith said and researched it. After all, I'd basically learned that I couldn't trust anyone. Anything that I couldn't find a scientifically substantiated basis for, I discarded. Everything I learned was a new clue. I gathered the pieces together, like building a puzzle. One of the things I liked about Dr. Smith was that he, himself, was an avid researcher. When I had been in his office, there was a four foot high stack of research material on his desk. I've never seen him without an at least a two foot high one. The other thing I respected was that he, himself, had chemical hypersensitivity.

He called it MCS. But I had discovered that calling it that anywhere but in the state of Washington, was fool hardy. Everywhere else in the world classifies MCS as a mental disorder that requires psychotic drugs. That, due to the toxicity of the drugs themselves, destroys the patients who take them. I was ahead of the game on understanding this because one of the books I had read in my MSG study was Dr. Russell Blaylock's book, "Excitotoxins, the Taste That Kills." He details very explicitly what happened to the brain on toxic substances. I'd already found that I reacted badly to all pharmaceuticals and had gotten quotes from four of my local pharmacist, and two doctors, that said, "All pharmaceuticals are toxic. All pharmaceuticals have side effects." Seeing a psychiatrist or psychologist is a death sentence for the chemically sensitive. But that's where they send people with MCS, outside the state of Washington. To carry that diagnosis, is another fight, I didn't need. Dr. Smith, unaware of that attitude in Oregon, gave me that diagnosis. It made the Regional Director of Voc. Rehab. very happy, her reign of terror was concomitant with my finding an EI doctor. I guess I should be more explicit, none of the battles that I write about, occurred at a time that nothing else was going on. If I wrote about them all at the same time, I'm afraid, dear reader, you'd lose your mind.

This brings us to my son's graduation. I was diagnosed in March of '04, and my son graduated high school in June. At the same time I was beginning Voc. Rehab. I was also trying to figure out how I was going to attend graduation! These kinds of once in a life time, historical family events, that we're forced to miss, due to a disabling disease, that was not our fault, are tragic and heartbreaking for the chemically sensitive. I refused to accept it. I focused a section of my research on, 'how I could protect myself and go.'

One of the most detrimental things that we do to ourselves is refuse to accept that we are that sick. We keep pushing to participate in "normal" life and tell ourselves that if we do 'this and such', it won't be that bad. We all do it, because we want to be involved. We don't want to do without, depend on other's for everything or be isolated and excluded. So, I looked at haz-mat suits, independent breathing apparatus, VOC filter masks, etc. My son was horrified at the thought of me attending in a haz-mat suit or a big, black rubber 'grasshopper' mask. O.k. So that wasn't going to work. One, it would put all the focus on me, proving that I was a wierdo. My son would be emotionally scarred, and all the "protective gear was made of petroleum or synthetic by-products.

Up to this point I've managed to leave out a horrifying side story that developed along with all the other crap. Remember, nothing happens in isolation... So let's digress, just so you understand the importance of not using petroleum by-products or synthetics.

If you'll remember, my daughter was away at college. Like the supportive mom that I wanted to be, I was making the five hour journey down to see her once a month. Most of the time, Ron and Ryan came too. I don't remember exactly when it happened, the onset was gradual. At first I didn't notice. Good thing for hind sight. When we'd go down, Ron and I slept on an inflatable bed. It was made of vinyl. That's poly vinyl chloride. It's toxic. Another thing I didn't know. I wasn't sleeping well and I'd wake up with pain all over and I couldn't move. And I was cold. No, make that frozen! Didn't connect the dots. I bought this polar fleece zip up bathrobe. Nice and toasty. Polar fleece is a petroleum by-product. Toxic. I started to have stinky sweat, and heavy night sweats. Didn't connect the dots. Then finally, on one trip down, where Ron was driving, I reached my maximum load... About three and a half hours into the trip, I could smell this horrible odor. It smelled like roadkill. It was me. Every where that my body, through my clothes, contacted the synthetic upholstry, my skins cells were dying and decaying. They formed a thin, black, gummy paste. It took me five showers, with baking soda as a scrubbing agent to remove it. I also had to wash those clothes multiple times to get the smell of decomp out! Those of us with Toxic Injuries call the stinky sweat, "Toxic Sweat." the other, is called "Death Sweat." it is common, with in our group. So that is why, I had to find a non-toxic way to access Ryan's graduation.

I hadn't found a solution yet, but I contacted the School Assistant Superintendent, and made my accommodation request. He balked. I wielded the ADA Title II like a club. After a few well placed blows, he got on board. He turned it over to the Maintanance Engineer at the High School. That kind gentleman came up with some very UN orthodox but clever ideas. All of which we had to let go, due to the 'embarrassment factor' for my son. In the end, we compromised, assigned a section of the seating as fragrance free, and our family a subsection of the seats, with direct, easy access to two open gym doors, with a cool breeze blowing in. I had a chair outside and could quickly come in for the few moments of the important parts. Ron taped the rest. In my search for VOC filtration, I discovered a woman that made very plain, beige face masks. They held a charcoal impegnated VOC filter. While we tried to keep it very low key, I still felt like a freak. But, I got to see my son graduate.

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