Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 Dear Bob, I am deeply saddened to read this news. I will print and save your letter because it says so much to me both about your and 's courage and your relationship to our situations. Perhaps most of us are simply making peace with our illness at this point in history because that is all we know to do. I pray that life will open before you in the days and weeks ahead - that you will know the direction for your own life and what will be meaningful for you and the world around you. With true affection, a Carnes Grommes Posted by: "Bob Grommes" bob@... bgrommes Sat Aug 4, 2007 1:46 pm (PST) 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Dear Bob -- I can't find the words to properly express my condolences and sympathy to you regarding your wife's death, except to echo Penny and a's comments. To be sick for so long and not have given up years ago is indeed a testament to her determination courage and your support and love. Penny's so right. You need to stop and take care of yourself now, however long that takes. Sincerely, Dan --- In infections , " a Carnes " <pj7@...> wrote: > > Dear Bob, > > I am deeply saddened to read this news. I will print and save your letter > because it says so much to me both about your and 's courage and your > relationship to our situations. > > Perhaps most of us are simply making peace with our illness at this point in > history because that is all we know to do. > > I pray that life will open before you in the days and weeks ahead - that you > will know the direction for your own life and what will be meaningful for > you and the world around you. > > With true affection, > a Carnes > > > > <infections/message/12034;_ylc= > X3oDMTJzMm83M3FmBF9TAzk3MzU5NzE1BGdycElkAzE0NzE5ODE1BGdycHNwSWQDMTcw NTA2MjIx > NQRtc2dJZAMxMjAzNARzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMTg2MzA2MDgy> > Grommes > > > Posted by: " Bob Grommes " <mailto:bob@...?Subject= > Re%3A%20Grommes> bob@... > <bgrommes> bgrommes > > > Sat Aug 4, 2007 1:46 pm (PST) > > 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 > Quote Link to comment Share on other sites More sharing options...
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