I made an appointment with my allergy- asthma doctor for the 10th of March, 2004. It was the oddest appointment. The whole time I was telling him about my symptoms, he kept interrupting me to ask if I had a runny nose. I kept telling him that I hadn't had a runny nose since I discontinued eating wheat. Then he interrupted me again and tried to force an asthma inhaler into my hand. I refused it and reiterated that they made me sick, and I hadn't used one in years. He insisted! I refused again and listed the symptoms that occurred every time I had tried to use them, ending with, "So, what do you call that?" I expected him to say, "brain seizure." But he didn't. He said,
"Chemical Hyper-sensitivity." and he was crying! Then he said, "There is no treatment; there is no cure; it will only get worse with every exposure. Go home and avoid all fragrance." (remember, at this time, no one was connecting the dots to pesticide exposure, and my reactions appeared to be linked to fragrance.)
I remember realizing that he was telling me to go home and die. I thought to myself, "Like hell, I will!" then he went on to say,
"I won't see you, I won't help you, don't ask me. Find an EI doctor." and he got up and left. I was stunned. My world was rocked. I liked that Dr.. I thought he was a decent man, until this. I got up, gathered my things and left quietly. I felt shocked. But, not enough to prevent me from pausing at the front desk and sweetly request a copy of my chart notes be mailed to me... Which was a good thing. Later in desperation, when I did call his office for help, I was told that my chart notes said, I came in on that date for "a runny nose..." Either they lied, or they falsified my record.
When I got home, I went straight to my computer and began researching. I didn't know a thing about "Chemical Hypersensitivity." I spent almost everyday there, for months. I read, I sifted, I dug. I realized that a number of the people who had been in my fibro group, had this. They just didn't know it.
I quickly discovered the huge controversy surrounding this condition: it is chemical poisoning by consumer product and environmental toxins, manufactured by the same chemical companies that manufacture pharmaceuticals, that mask the symptoms of the diseases brought on by the industrial and consumer product chemicals. Not only that, all the schools and licensing boards of allopathic medicine are controlled by the chemical companies. Dr.s and researchers who recognize, or diagnose, this condition are black balled, lose their license, funding or standing. Chemical industry dollars control universities and government. That explained my doctors horrifying behavior.
Meanwhile, in my real world, the sky was falling. My research showed that avoidance was the only effective option. I could still do a job, I just needed a fragrance free environment. But, no one wanted to be bothered to accommodate me. I very quickly realized the prevalence of fragrance and the hostility of people who were asked to accommodate my medical need to avoid it. I worked one more teaching job and was told that "it was too burdensome to accommodate me.
If I couldn't find an employer that would accommodate me, It meant that I had to withdraw from life. I balked. I pitched a hissy. I had screaming temper tantrums! I did not want to be disabled!! I still possessed talents and skills that were valuable. I felt sure there was someone who would hire me.
I began Vocational Rehabilitation and filed a Workman's Comp claim. Neither of which went very far. The level of anger, hatred, distain and bigotry was unimaginable. The Regional Director of VOC Rehab made it her personal mission to prevent me access to that public service! She fought me at every turn and made my life a living hell. She refused all accommodation and removed my sympathetic counselor and replaced him with a like minded vicious bitch. I got a lawyer through the disabled program, we had a hearing, and I won. I got my good counsellor back. It was a precedent setter. Which pissed her off even more. Unfortunately, she was still the regional, through which everything I was doing had to pass. She held me to a much higher standard than anyone else, according to my counselor, and bullied and harassed me at every opportunity. I finished up with my VOC Rehab services as soon as possible, and walked away. I later learned from my counselor, that regional was suffering from horrible, debilitating fibromyalgia. God is just.
As far as the Workman's comp claim? They insisted that I see their doctor, without accommodation. (which is an ADA violation!) They were unyielding. There doctor just happened to be the doctor who was giving a seminar on "Multiple Chemical Sensitivity, the Centuries Biggest Scam." I could tell I was going to get a fair hearing from this guy. (dripping with sarcasm) I withdrew my claim under duress.
But it didn't just stop there. It was every state and local government agency. It was every private entity I needed a service from. I had to take them all on. On the turn of one day, every moment, every aspect of my life became a battle or a persuasive argument. Everywhere I went, I was assaulted by chemicals. If I was going to preserve my health, I was supposed to avoid chemicals. I couldn't do it!
I was so nieve, I thought people would be understanding. Especially those in the medical community. Once I had my diagnosis, I was dumped by my family doctor, my chiropractor and my Ob/Gyn, as well. They wouldn't even consider accommodating me. By this point, I'd been screamed at, spit on and thrown out. My dental assistant did accommodate me... She scaled my teeth in my car. My opthomologist, too. He decontaminated his whole operatory. But he charged me extra, another ADA violation. I paid it. I needed my eyes checked.
I still had to find an Environmental Illness doctor. With my track record so far, talking to doctors ranked right along side of "being hit by a car." I guirded my loins and waded in. Some research turned up someone named "Dr. Smith." he practiced alternative medicine, and was an MD. I thought of "Lost in Space." At that time, everything about alternative medicine was suspect to me. I didn't trust any doctors. But I made an appointment, and went to see this guy.
Oh, dear! He practiced homeopathy and muscle testing. Both of those disciplines were way to "subjective" for me, a bred to the bone scientist... My mother holds her B.S. in Nursing, my father a degree in Engineering and a MA in Math. We ate science for breakfast in our house, growing up.
Poor Dr. smith, he is so incredibly patient! And persevering. His first impression of me was probably that "somehow he took a wrong turn and ended up in an exam room with a feral cat!" But, he arranged for several tests, prescribed me some supplements and assured me that we could treat this. He also advised me that it takes from 2 to 7 years, depending on how bad it was. After my test results came back, he said I was going to be in treatment for a long time. Given my recent treatment by the medical profession, that statement only increased my suspicions more. All my subsequent visits I insisted on seeing him, outside, behind the complex at a picnic table they had for staff. Their office reeked and made me sicker. By golly, he accommodated me. Things were looking up.