Guest guest Posted August 4, 2007 Report Share Posted August 4, 2007 Dear Bob, I am so sorry to hear of your loss. I hope that you can take some comfort from the fact that your wife's passing was peaceful. I can certainly understand that she was probably ready to just let go. She suffered far longer than seems reasonable for any person. There have been many times that I've felt this way myself, and I'm certainly not as ill as she was. But I can so easily empathize with both of you. I also take some comfort in that she did not die in a cold hospital somewhere, but at home where she must have felt so safe and secure and cared for. Your exhaustion and ambivalence toward groups like this are completely normal. You most definitely should take a break and spend some much needed time looking after yourself. You have a major recovery to undergo here as well. You need to heal now. Just know that we are here to listen if you need a sounding board. When so many don't or can't understand what you've been through, we do, so never hesitate to come here for help. You have been a great asset to this group, not to mention a wonderful example and inspiration to all of us in the way you supported your wife through this nightmare of an ordeal. My heart and prayers are with you and your wife. May you both find some peace now. penny Bob Grommes <bob@...> wrote: 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 5, 2007 Report Share Posted August 5, 2007 My thoughts are with you, Bob. Matt > > List, > > My wife, , passed away this week. > > --Bob Grommes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 Bob, The news of 's passing does make me very sad. She obviously had such a fantastic ally by her side, not just a sympathetic husband (which many here don't necessarily have), but a true fighter to fight her battles with her. It didn't save her life but it must've taken away a lot of the anxiety involved in this horrible illness, it probably gave her the feeling that everything humanly possible was being done. It probably allowed her to let go peacefully when she couldn't take more pain. Bob, I've always admired your dedication and your intelligence in dealing with all this, juggling all the various parameters with great skill and courage. Like Penny, I understand your wanting to "take a long break/vacation" from all of this. But if you do want to keep on sharing with us, here on I and I or elsewhere please do, you have learnt a lot and we all value your comments. Nelly (in Paris-France) [infections] Grommes 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 5, 2007 Report Share Posted August 5, 2007 thoughts with you.bleuOn 4 Aug 2007, at 22:45, Bob Grommes wrote: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 5, 2007 Report Share Posted August 5, 2007 My heart goes out to you for your loss. Thank you for being there for her. Marie --- Agentbleu <colourbleu@...> wrote: > thoughts with you. > > bleu > On 4 Aug 2007, at 22:45, Bob Grommes wrote: > > > 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 7, 2007 Report Share Posted August 7, 2007 Sorry to hear it Bob... best wishes to you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Bob that is so sad..You at least alway's gave her strength and 100%. So as little as it may sound, you can take some comfort from the fact that we all thought you were a gem .... tony > > > 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 7, 2007 Report Share Posted August 7, 2007 Bob, My sincere condolences. was very fortunate to have you. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Bob, I'm so sorry. That you for telling us. Trina DesertGal <llgrommes@...> wrote: All, Grommes has subscribed to this list for many, many years -- mostly as a lurker of late due to ill health. This is her husband, Bob. Her 31 year battle with Myalgic Encephalomyelitis / CFIDS, MCS, and related complications is over. She passed away August 1 at the age of 54. She knew the direction things were headed, and in typical fashion she made contingency plans to make this easier on me to the extent possible. One of the check off items was to let you folks know. I'm sure she would want to encourage you all to never give up. seemed incapable of giving up. She lost so much during her life: a career as a systems analyst that she loved; her avocations as a renowned breeder of both champion Shetland Sheepdogs and Shetland Sheep; her beloved farm; and in the end, her ability to travel, dine out, read for pleasure, and more. Yet she never stopped researching, trying new treatments, and picking brains. She remained hopeful, and did not become bitter. She was a fighter, right down to the last ounce of strength. Anyone who wishes a copy of her obituary and / or info about the charity she selected for people to donate to in lieu of flowers, feel free to write me at: bob@... I will be flying to Michigan for the memorial service Thursday thru Sunday but will respond when I return. Best, --Bob --------------------------------- Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Bob, Your loss can only be imagined, and my warm thoughts will be with you. It is inspiring how kept working toward a solution for this illness. We cannot give up, and it is so apparent that not only did she keep going but that she also inspired those people around her. I'm so sorry for your loss. Jill Grommes All, Grommes has subscribed to this list for many, many years -- mostly as a lurker of late due to ill health. This is her husband, Bob. Her 31 year battle with Myalgic Encephalomyelitis / CFIDS, MCS, and related complications is over. She passed away August 1 at the age of 54. She knew the direction things were headed, and in typical fashion she made contingency plans to make this easier on me to the extent possible. One of the check off items was to let you folks know. I'm sure she would want to encourage you all to never give up. seemed incapable of giving up. She lost so much during her life: a career as a systems analyst that she loved; her avocations as a renowned breeder of both champion Shetland Sheepdogs and Shetland Sheep; her beloved farm; and in the end, her ability to travel, dine out, read for pleasure, and more. Yet she never stopped researching, trying new treatments, and picking brains. She remained hopeful, and did not become bitter. She was a fighter, right down to the last ounce of strength. Anyone who wishes a copy of her obituary and / or info about the charity she selected for people to donate to in lieu of flowers, feel free to write me at: bob@... I will be flying to Michigan for the memorial service Thursday thru Sunday but will respond when I return. Best, --Bob ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.6/938 - Release Date: 8/5/2007 4:16 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hi Bob, > 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. Two and a half years ago, when I was preparing to give magnesium shots to my daughter for the first time, provided me with detailed instructions, encouragement, and links to good diagrams. It breaks my heart when people who are desperately ill themselves use their meager energy to provide help to others. I see my own beloved daughter doing the same thing, trying to help others, when she can barely sit up. I only read this list now--I don't post--because I can't bear it when good people die. " in AZ " was one of the good ones, as are the people who post here. The best. I hope you stay, or come back. Sue Upstate New York Quote Link to comment Share on other sites More sharing options...
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