Grommes

[Guest guest]

List,

My wife, , passed away this week. As you know if you've read my

posts in the past, she had a long struggle with ME / CFS and more

recently severe MCS and complications thereof, and at the end, gall

bladder problems. She just didn't wake up one morning. She was 54

years old and had been ill for 31 of those years, and disabled the last

25. Yes, the

flu-from-hell-that-lasted-six-months-but-never-really-went-away that

started this whole thing, happened when she was still a young adult and

just getting her career as a systems analyst underway (ironically, she

worked for Upjohn, which after a series of mergers has now become Pfizer).

As you all know, the above is in large measure another way of saying

that she had multiple infections throughout her body. We can save the

debate for another day as to to what extent infections were a cause or

an effect of her illness. At least doesn't have to puzzle the

question any more. To be frank, she had gotten rather tired of it. For

her it had become a question without answers, because as a universal

reactor, there were very few antibiotics she could tolerate. In the

end, Biaxin, unfortunately, was about it, and that was very hard on her

stomach as it was. Her doctor was trying a " hail pass " with

Valcyte because she fit the profile for possible benefit from that drug

(sudden-onset of ME, immune-activated, certain viral titers high). She

died before she had a chance to start it, but I very much doubt it would

have been tolerated, considering that the product literature warns you

to wash your hands immediately with soap and water, should you touch a

broken or crumbled pill. That does not sound like a recipe for success

in treating a chemically sensitive patient.

In retrospect we wish we had a crystal ball in the1990s before she got

painted into such a terrible corner by the MCS, and could have pursued

aggressive antibiotic and antiviral therapies before she became too

frail to handle the side effects. But really, there was back then to

our knowledge (a) few if any doctors into that angle and ( we had

every reason to hope she would continue on a stable plateau as she had

for years already. The fatal mistake was that she " made peace " with the

illness and the illness did not uphold its end of the peace accord.

's love for life kept her going I think for several years beyond

what most people would have lasted. She was a fighter. I am honored to

have shared her live and love these past 13 years. I could go on for

many paragraphs about what she managed to accomplish and the lives she

touched in spite of being so ill -- far more than most healthy people,

really. She was a very special person, to many, many others, not just me.

I'm heading to Michigan for memorial services in a few days, and I

haven't yet sorted out how I feel about my involvement with this and

related lists I've followed, and with various activist or supportive

things I could do for people like . As you can imagine a

significant part of me wants to take very long vacation from the

struggle, and maybe even pretend it was all a bad dream. Another part

wants to give meaning to her death by lending myself to the fight. I

guess we'll see which side wins out in the coming weeks and months.

Regardless -- thank you all for being a resource, a sounding board and

sometimes, just listening, these past months.

Best,

--Bob Grommes