Six Thousand Days Since Normal
Page 4

Life was miserable beyond description so I won't even try to describe the ensuing months and my parents' desperation and lack of any answers from this famous medical institution.

I couldn't go anywhere anymore. Everything caused me to wheeze, fall over, get sick in a million ways—every scent, every chemical, and every place.

Fortunately, I had already started networking around the globe and found large groups of people from many countries with the same medical problems. Some referred to it as Multiple Chemical Sensitivity or MCS. I just call it chemical injury. Chemicals had damaged more of me than I knew at that time.

My friend, the research scientist who had helped me during the internal hearing, was so alarmed at what was happening. Along with my Dad, he tried to find other doctors who might be able to help me. Little did I know that what had started in the autumn of 1993 had just gotten a million times worse.

My new friends from online support groups, plus a new group—Gulf War veterans—became my only social contacts. I couldn't go out—everything would send me flying to the ER.

1999

I have mentioned the Gulf War veterans and the reader may wonder why I and some other civilians became involved with these guys and gals. Well, it's pretty simple; a lot of their symptoms were exactly like ours—respiratory problems, immune disorders, intestinal and neurological problems—the list goes on and on. We were all sick from a wide variety of chemical exposures and mainstream medicine and our government thought we were faking it.

Faking it—try life in one of our bodies for just one week. You won't think we've been faking it anymore. You will be living in the nightmare that marks our daily lives.

By spring, my Dad and I had located a physician whom several people had recommended. He was the Chief of Toxicology at another medical institution three hours away. So my Dad drove me and Mom one May morning.

This physician spent almost three hours with me, asking many questions and taking careful notes. He told me that chemical exposures had made me very ill and that I was definitely not crazy. In addition, he was shocked at the amount and choice of anesthesias they had used. His main advice was to remain isolated in a carefully controlled environment and to try to get as much exercise as I could tolerate to literally sweat the toxins out of my system. This was very challenging as many days I could barely stand up.

I saw this amazing guy twice more. But it was difficult for him to really treat me because of the distance and because he was "out of network" in the medical insurance lingo.

Fortunately, in September, I found another physician in my own back yard who also understood what had happened to me. The first time I met with him, I handed him a huge pile of records and apologized for the size of the material. He replied that he wanted all of it; there was never too much information. And since that day, this quiet, gentle, very strong and brilliant Navy veteran has been my physician. That's one of the only reasons that I am alive today, in 2010, to tell this story.