Tuesday, March 14, 2006

Twenty Six Years Ago...(How I acuqired MCS)

This will be a difficult story to tell, and not a pretty one nor one pleasant to hear about and most likely will be way too long. My story is typical, yet not so typical. However, in it you may find something that you can identify with as well as get to look inside my head a bit and perhaps understand why I have some of the attitudes I do. So here it is...


In 1979, we had packed our three kids in a motorhome and traveled around the western half of the U.S.A., from southern California to Iowa and back again. I was twenty-nine years young, had gone to college studying computer programming and later television directing/producing between the second and third children. I had taken twenty credits a semester (full load was 12), worked part time and raised those two kids all at the same time. Yes, I was very busy! I doubt anyone would have considered me lazy back then.

The trip was wonderful and exciting. We went from Escondido to Seattle to Lake Tahoe to Wyoming, then Colorado and Iowa with Colorado being home base for the summer. In the fall we went back to Escondido, our plans of moving to Washington being put on hold for a bit longer. I never made it to Washington. I wasn't feeling well. When I found I was pregnant I assumed the unwell feelings had to do with pregnancy. However it was like none of my previous pregnancies when I had felt wonderfully well. I was sick, weary, tired, "off" and having other strange symptoms that I've forgotten about all these years later.

The baby was born four weeks early and had birth defects. He was sent to Children's Hospital which was about forty five minutes from where we lived. I thought I was feeling bad due to the stress, the drive, and having a 3, 7 and 10 yr olds at home who also needed attention. But that didn't explain the rash nor the tingling I got in my legs by the end of the week. Still it had to be stress. Right? The baby was very small and wasn't ok, then I was told he was fine and then days later I was told he wouldn't live. My son died at 6 days of age. The doctor prescribed valium. It finally did dawn on me that the rash was a measles rash. I had been given a rubella shot several hours after delivery, another bad idea but little did I know then.

Three months later I was still feeling awful and getting worse. I happened to go to a wonderful doctor who immediately realized it wasn't just stress I was dealing with. In the end I learned that living too close to an avocado grove where they were doing aerial spraying was the culprit. I'd had pesticide poisoning! I also found out that there were several babies in the area who had been affected as well. Knowing that didn't really help anything much. All I knew was that I had all these weird symptoms and was beginning to react to many commonly used products and developing sensitivities to just about everything.

The house made me sicker and soon we were once again living in the motorhome. By spring we decided to move to Arizona near my parents. That proved not to be the best idea. It turned out that they sprayed the cotton fields there with the same chemical I'd been poisoned with. By this time my lifestyle had drastically changed. I wasn't able to go out much. I felt like my body was revolting against me. But it was just the beginning of my problems.

As impossible as it seemed in 1983 I got even sicker. I hurt all over, was absolutely and totally exhausted to the point that I just laid on my mother's couch and wished the bathroom wasn't 15 feet away. I could barely walk the distance. My throat was sore, my glands swollen. I felt like I must be dying. I began to loose weight, though I had little to loose. I went to a nutritionist, a chiropractor and an MD. The MD wrote out a bunch of prescriptions although he really didn't know what was the matter.

I remained that way for over eight months. Finally some doctor persuaded my ex-husband to move me out of the valley away from the smog and spraying. Sometime before I had that bad crash in 1983 my middle son had come down with a strange virus that caused his spleen to swell. He was sick for several weeks. And then my twenty year old brother come down with rheumatic fever. He had lived with me in California the year they sprayed. I believe these incidences were all related somehow.

We moved to the Arizona mountains in the late fall of 1983 and remained there for the next fifteen years. After a few years I was able to tolerate things a bit better but I still had the exhaustion and other symptoms that I never could relate to anything in my environment. All those years my only diagnosis was pesticide poisoning, which lead to chemical sensitivity. I didn't know another soul who had all the symptoms I did. I did finally met one woman who had multiple chemical sensitivity, referred to as environmental illness back then and we compared notes. But she never had some of the symptoms I did and avoidance did not resolve all my symptoms.

1989 was another terrible year. Again I lost weight and became extremely ill, not that I had ever been 'well' since I first became ill. My middle son was 15 and around the same time I found myself going downhill rapidly he started having symptoms. He was down for months. The doctor tested for mono, and was thinking about 'valley fever' and TB. My poor son, who'd been a strong teenager who liked to play sports and lift weights suddenly couldn't move off the sofa. He had all the typical mono symptoms and then some.

Around the same time I had gotten some 'blood blisters' in my mouth. I had gotten them off and on for quite some time but never happened to have them when I was in the doctor's office until that time. The doctor told me I had CEBV (chronic epstien barr virus) which is what they called CFS at that time. He'd thought I'd already been told I had it or would have tested me and told me before! He ran the tests simply so that I would know for sure. But even though my son had been ill and we shared some symptoms it didn't occur to me that he had something that wouldn't go away, much less that he had what I did. It just didn't click in my head. My son had already been ill for a month or so when I finally got a name for my illness in addition to the MCS.

My son remained very ill for many months then seemed to partly recover only to crash again. He went that way for several years, feeling like he was getting better only to find himself feeling awful again. He got married in his early twenties and several years after that I was diagnosed with cfs and fm.

(I warned you this was going to be long! :) so now I'm going to make a huge leap to some twenty years later. One day I'll back track and cover a few other things by topic about these earlier years).

Like many homes, unfortunately, my ex-husband couldn't handle having a sick wife. He'd had enough problems being a husband to a well one. And so after years of illness we got a divorce. That took a huge stress load off of me (there were other problems before the illness) but of course being single and unable to work and having a child there were other stresses to deal with now. Finances had always been a problem and was a much bigger one being that I was to ill to work. I won't talk about disability benefits at this time but it may well be worth discussing later.

Jumping ahead a few years.... I met my current husband on a CFS group online. Three years and two visits later we finally were able to be in the same place at the same time and got married. Did I tell you my husband also has CFS, FM and MCS ??? And yes, this makes for other complications! But ten years after we met and we're still together... !

So now you know a bit about my background and next time I can start out by imitating Joannie Rivers and ask "Can we talk???"

Whew! This is it ! All done.

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