Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Bob, and others, I understand you frustration and your anger. I've been through it. However, there is a lot of truth to what is saying that can give us hope. But when I was extremely ill, 20 some years ago, I didn't want to hear anything positive, either. It really pissed me off! I am well today primarily because of avoidance. There was no diagnosis for me so there was no specific treatment. I eventually identified three key factors. One was medical - candidiasis - and the other two were exposures. It took avoiding all three to start getting better. Overlaying that was all the reactions to everything else. I learned/created something similar to what did. But instead of calling it " extreme avoidance " I didn't call it anything, except perhaps surviving - the pain, headaches, naseau, undeniable fatigue, inability to remember let alone think, depression, when simple tasks were unbearable and tooks weeks to eventually accomplish. Answering the phone or taking out the garbagte was impossible. The loss of my business, my house, my money, my wife and all but my son. And he was sick. If I were to give what I did a name it would be a range of avoidance or priorities. I couldn't avoid everything because I was reacting to everything. I couldn't avoid reactive foods, for example, because I was reactive to all foods. But I had to eat. One food in particular would put me to sleep without me remembering I had done so. I'd wake up 3-6 hours later with no memory of lying down. It felt like I had a hangover and in a sense I did with what I now know about some of the chemistry of the body. Because I had my own business I believed I couldn't stop and take care of myself. Others were dependant on me. So I stayed and kept struggling. And continued to get worse. What I somehow realized later, even in my desperation, was that the impact of all exposures was not the same. Some exposures were debilitating, some moderate, and others slight. So I prioritized them. Those that created severe reactions I tried to avoid absolutely, knowing that it was impossible. However, by striving for perfection I greatly reduced the exposures to seldom. It took 3 years to figure out some of them. Those that weren't so severe I'd allow occasional exposures, similar to a food rotation diet. The lessor ones I didn't try to avoid because the consequences, while not really tolerable, were virtually indistinguishable from my general suffering. Besides, I couldn't stop living. It took me about 2 years to go from disabled to being able to work a tiny bit. It took another 10 years before I could work full time. But it was on my time because I couldn't work on demand. I worked when I could and that was never a typical 8 hour day. It might be 12-14 hours straight and then a 2-3 days with no activity. No one would hire me. I still can't climb mountains - at least I don't think I can - but then I have no desire to climb them. I have other activities I'd rather pursue. Was it easy? Hell no! I can remember when I was in reaction almost constantly that I'd celebrate a few good hours during a month. Years later when I was about 50/50 it was incredibly discouraging when I'd go into reaction - again - because I realized that I had 2-10 more lost days of my life. I just had to wait it out, while I intensified my avoidance again. It's now 22 years or so later and I don't have to avoid so much. It takes more to affect me, it isn't as strong, and my recovery is faster, taking minutes to hours instead of weeks or months. But I still practice avoiding and/or stopping exposure. It's the only thing that works. There is still no medication or medical treatment or high tech remedy for " what I have. " Only avoidance. I don't deliberately go into a building that will make me sick. But because that is partly how I make my living I protect myself with a respirator and other measures to reduce the exposure. If I get too reactive I take the only action that I know will work... I LEAVE! Did it make me want to puke, like you say? Absolutely. Especially when I finally figured out that the one thing I knew for certain is that what happened to me... wasn't necessary. And it's always something new. For example, 2 weeks ago I was taking a certification class. On day 3 we moved to a different room that I couldn't tolerate. I left the class until I could figure out what was going on and fix it. It was vibration from the HVAC system! Turn off the blower and I was fine. Turn it on and I was out of there in minutes. (No, it wasn't mold, it was vibration, confirmed by an acoustics expert in the class). The instructor, the class and I had to accommodate each other. I'm not sure how we did it but it happened. The key is to avoid or stop the exposure. And you may have to leave to do it. Quite frankly, what else is there? If you can't avoid it, stop it as quickly as possible, either by removing the source or removing yourself from the source. If you can't stop it a temporary action is to reduce it with ventilation, filtration or periodic absences. If that isn't enough LEAVE. What else is there? Stay? And continue the " beating? " If I were to stop avoiding exposures, I'd eventually be as sick now as I was 22 years ago. What I admire about is that he takes a stand and tells his personal story even when he knows he won't be believed, even when he knows he will be ostracized. I've only told bits and pieces of mine, until now, but never as part of taking a personal stand like does. So while he and I have differences - don't we all! - he has the courage of his convictions to state his beliefs for all to hear. And it is that stand that has finally led me to tell more of my story. Positive attitude? Yes, but that alone won't heal you. Determination? Absolutely, but that alone won't heal you. Finding the " magic bullet " through medicine, technology or belief system? Good luck. I don't expect it in my life time and I still have several decades to go. What I do have is a " knowing " that I didn't die, although some of my friends have. There is a force to live beyond my awareness and beyond my will. But some of my friends lost it. These are the " real " answers, Bob, to the real questions. There is no quick and easy diagnosis and cure. But some things help. The only reliable action is avoidance of exposure or stopping the exposure once you become aware of it. You have to diligently pay attention to figure out which exposures cause which reactions, and then prioritize them by impact. And then give your body time to heal. The major advance now, as I see it, is there are medical diagnostics and treatments available now which I didn't have two decades ago. They help some of us but not all of us and for a few contiditons, but not most. We still have to search for what woeks for us. Even if we are the only one in the world that has that experience. Next month, after my article about Christa is published in IE Connections, I'll re-post it here. We can all learn from her experience when reality suddenly changes and we have to start over again. And again. And again. Carl Grimes Healthy Habitats LLC ----- > Recently I asked for real answers to our death or life questions some > of us face. some of us are not climbing mountains. Some of us just > want to face tomorrow with a clear head and not spend all day trying > to stay alive. > > It makes me want to puke when I see answers telling people they need > to leave right now!! I came back here knowing that soon one day I will > start feeling that feeling again where life is short. I am close to > where I grew up and if I am going to die, I don't want it to be in > some strange land. I am not wishing those who gloat about climbing > mountains any ill will but just what do you think you are > accomplishing by saying this over and over? That your doctors were > wrong? If I make it through this, it will no thanks to anyone who had > the knowledge and resources to build their own motor home. I cannot > even fill out Shoemaker's complicated forms much less go the several > day trip. > > Ask me if I would smoke a joint if I knew someone who sold pot? > somehow ggetting rid of this feeling that is in my head right now > seems to be the only thing that matters right now? guess I am stupid. > > Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Carl, Bob, and others. This is a very good post Carl, and Bob, I understand your frustration. keeps reminding us that he was also at " deaths door " as most of us have been at one time or another, or if not, have felt so bad, that we would rather be dead. This is what worked for Carl and , and I think that is great. But I do get frustrated when one person, be it an individual, doctor, or whomever keeps insisting that his/her way is the only right way. There are some who can't just leave their families espcially if they have young children dependent upon them and don't have the support of other family members. Some just don't have the energy or the money to make the change. I don't think that means that they don't want to get well. CSM has worked miracles for some, but not others. Desensitization has been life saving for some, but hurt others. Steroids are poison for most, but also have saved lives for others. I have gained valuable information from each and every poster, even if I don't agree with everything they have said. I do think that avoidance is the major factor, but there are some who don't get better even then. Maybe some who have avoided exposure and gotten well, didn't have the genetic susceptibility to make them stay sick once they were out of the environment. This illness has affected us all so differently, there is no one right answer. Maybe the New Year will bring renewed hope, and those doctors who are for us will pioneer more answers. Let's keep that hope alive for those of us who still aren't well and be happy for those who have found some success. Kathy " Carl E. Grimes " <grimes@...> wrote: Bob, and others, I understand you frustration and your anger. I've been through it. However, there is a lot of truth to what is saying that can give us hope. But when I was extremely ill, 20 some years ago, I didn't want to hear anything positive, either. It really pissed me off! I am well today primarily because of avoidance. There was no diagnosis for me so there was no specific treatment. I eventually identified three key factors. One was medical - candidiasis - and the other two were exposures. It took avoiding all three to start getting better. Overlaying that was all the reactions to everything else. I learned/created something similar to what did. But instead of calling it " extreme avoidance " I didn't call it anything, except perhaps surviving - the pain, headaches, naseau, undeniable fatigue, inability to remember let alone think, depression, when simple tasks were unbearable and tooks weeks to eventually accomplish. Answering the phone or taking out the garbagte was impossible. The loss of my business, my house, my money, my wife and all but my son. And he was sick. If I were to give what I did a name it would be a range of avoidance or priorities. I couldn't avoid everything because I was reacting to everything. I couldn't avoid reactive foods, for example, because I was reactive to all foods. But I had to eat. One food in particular would put me to sleep without me remembering I had done so. I'd wake up 3-6 hours later with no memory of lying down. It felt like I had a hangover and in a sense I did with what I now know about some of the chemistry of the body. Because I had my own business I believed I couldn't stop and take care of myself. Others were dependant on me. So I stayed and kept struggling. And continued to get worse. What I somehow realized later, even in my desperation, was that the impact of all exposures was not the same. Some exposures were debilitating, some moderate, and others slight. So I prioritized them. Those that created severe reactions I tried to avoid absolutely, knowing that it was impossible. However, by striving for perfection I greatly reduced the exposures to seldom. It took 3 years to figure out some of them. Those that weren't so severe I'd allow occasional exposures, similar to a food rotation diet. The lessor ones I didn't try to avoid because the consequences, while not really tolerable, were virtually indistinguishable from my general suffering. Besides, I couldn't stop living. It took me about 2 years to go from disabled to being able to work a tiny bit. It took another 10 years before I could work full time. But it was on my time because I couldn't work on demand. I worked when I could and that was never a typical 8 hour day. It might be 12-14 hours straight and then a 2-3 days with no activity. No one would hire me. I still can't climb mountains - at least I don't think I can - but then I have no desire to climb them. I have other activities I'd rather pursue. Was it easy? Hell no! I can remember when I was in reaction almost constantly that I'd celebrate a few good hours during a month. Years later when I was about 50/50 it was incredibly discouraging when I'd go into reaction - again - because I realized that I had 2-10 more lost days of my life. I just had to wait it out, while I intensified my avoidance again. It's now 22 years or so later and I don't have to avoid so much. It takes more to affect me, it isn't as strong, and my recovery is faster, taking minutes to hours instead of weeks or months. But I still practice avoiding and/or stopping exposure. It's the only thing that works. There is still no medication or medical treatment or high tech remedy for " what I have. " Only avoidance. I don't deliberately go into a building that will make me sick. But because that is partly how I make my living I protect myself with a respirator and other measures to reduce the exposure. If I get too reactive I take the only action that I know will work... I LEAVE! Did it make me want to puke, like you say? Absolutely. Especially when I finally figured out that the one thing I knew for certain is that what happened to me... wasn't necessary. And it's always something new. For example, 2 weeks ago I was taking a certification class. On day 3 we moved to a different room that I couldn't tolerate. I left the class until I could figure out what was going on and fix it. It was vibration from the HVAC system! Turn off the blower and I was fine. Turn it on and I was out of there in minutes. (No, it wasn't mold, it was vibration, confirmed by an acoustics expert in the class). The instructor, the class and I had to accommodate each other. I'm not sure how we did it but it happened. The key is to avoid or stop the exposure. And you may have to leave to do it. Quite frankly, what else is there? If you can't avoid it, stop it as quickly as possible, either by removing the source or removing yourself from the source. If you can't stop it a temporary action is to reduce it with ventilation, filtration or periodic absences. If that isn't enough LEAVE. What else is there? Stay? And continue the " beating? " If I were to stop avoiding exposures, I'd eventually be as sick now as I was 22 years ago. What I admire about is that he takes a stand and tells his personal story even when he knows he won't be believed, even when he knows he will be ostracized. I've only told bits and pieces of mine, until now, but never as part of taking a personal stand like does. So while he and I have differences - don't we all! - he has the courage of his convictions to state his beliefs for all to hear. And it is that stand that has finally led me to tell more of my story. Positive attitude? Yes, but that alone won't heal you. Determination? Absolutely, but that alone won't heal you. Finding the " magic bullet " through medicine, technology or belief system? Good luck. I don't expect it in my life time and I still have several decades to go. What I do have is a " knowing " that I didn't die, although some of my friends have. There is a force to live beyond my awareness and beyond my will. But some of my friends lost it. These are the " real " answers, Bob, to the real questions. There is no quick and easy diagnosis and cure. But some things help. The only reliable action is avoidance of exposure or stopping the exposure once you become aware of it. You have to diligently pay attention to figure out which exposures cause which reactions, and then prioritize them by impact. And then give your body time to heal. The major advance now, as I see it, is there are medical diagnostics and treatments available now which I didn't have two decades ago. They help some of us but not all of us and for a few contiditons, but not most. We still have to search for what woeks for us. Even if we are the only one in the world that has that experience. Next month, after my article about Christa is published in IE Connections, I'll re-post it here. We can all learn from her experience when reality suddenly changes and we have to start over again. And again. And again. Carl Grimes Healthy Habitats LLC ----- > Recently I asked for real answers to our death or life questions some > of us face. some of us are not climbing mountains. Some of us just > want to face tomorrow with a clear head and not spend all day trying > to stay alive. > > It makes me want to puke when I see answers telling people they need > to leave right now!! I came back here knowing that soon one day I will > start feeling that feeling again where life is short. I am close to > where I grew up and if I am going to die, I don't want it to be in > some strange land. I am not wishing those who gloat about climbing > mountains any ill will but just what do you think you are > accomplishing by saying this over and over? That your doctors were > wrong? If I make it through this, it will no thanks to anyone who had > the knowledge and resources to build their own motor home. I cannot > even fill out Shoemaker's complicated forms much less go the several > day trip. > > Ask me if I would smoke a joint if I knew someone who sold pot? > somehow ggetting rid of this feeling that is in my head right now > seems to be the only thing that matters right now? guess I am stupid. > > Bob FAIR USE NOTICE: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 I Agree with everything you say Kathy. It actually gave me hope that I will get better after reading peoples posts and got some VERY good advice which helped me get better. It is true that avoidance is the best but again some people CAN'T move because of $$$ and family reasons. It is very important to keep a roof over our heads and food on the table but sometimes not as easy as it sounds. I did not take people saying that they can go mountain hiking as bragging but as HOPE for me, but I can see how it could be misread as such. I am sure that wasn't bragging but letting us all know that we CAN get better. This sickness can make us angry, depressed, and very frustrated and it hard sometimes when we hear how well someone is doing. Weall want to be well too and very soon. I hope everyone has a good holiday season and stays safe. SW -- Re: [] Answers & Avoidance Carl, Bob, and others. This is a very good post Carl, and Bob, I understand your frustration. keeps reminding us that he was also at " deaths door " as most of us have been at one time or another, or if not, have felt so bad, that we would rather be dead. This is what worked for Carl and , and I think that is great. But I do get frustrated when one person, be it an individual, doctor or whomever keeps insisting that his/her way is the only right way. There are some who can't just leave their families espcially if they have young children dependent upon them and don't have the support of other family members. Some just don't have the energy or the money to make the change. I don't think that means that they don't want to get well. CSM has worked miracles for some, but not others. Desensitization has been life saving for some, but hurt others. Steroids are poison for most, but also have saved lives for others. I have gained valuable information from each and every poster, even if I don't agree with everything they have said. I do think that avoidance is the major factor, but there are some who don't get better even then. Maybe some who have avoided exposure and gotten well, didn't have the genetic susceptibility to make them stay sick once they were out of the environment. This illness has affected us all so differently, there is no one right answer. Maybe the New Year will bring renewed hope, and those doctors who are for us will pioneer more answers. Let's keep that hope alive for those of us who still aren't well and be happy for those who have found some success. Kathy " Carl E. Grimes " <grimes@...> wrote: Bob, and others, I understand you frustration and your anger. I've been through it. However, there is a lot of truth to what is saying that can give us hope. But when I was extremely ill, 20 some years ago, I didn't want to hear anything positive, either. It really pissed me off! I am well today primarily because of avoidance. There was no diagnosis for me so there was no specific treatment. I eventually identified three key factors. One was medical - candidiasis - and the other two were exposures. It took avoiding all three to start getting better. Overlaying that was all the reactions to everything else. I learned/created something similar to what did. But instead of calling it " extreme avoidance " I didn't call it anything, except perhaps surviving - the pain, headaches, naseau, undeniable fatigue, inability to remember let alone think, depression, when simple tasks were unbearable and tooks weeks to eventually accomplish. Answering the phone or taking out the garbagte was impossible. The loss of my business, my house, my money, my wife and all but my son. And he was sick. If I were to give what I did a name it would be a range of avoidance or priorities. I couldn't avoid everything because I was reacting to everything. I couldn't avoid reactive foods, for example, because I was reactive to all foods. But I had to eat. One food in particular would put me to sleep without me remembering I had done so. I'd wake up 3-6 hours later with no memory of lying down. It felt like I had a hangover and in a sense I did with what I now know about some of the chemistry of the body. Because I had my own business I believed I couldn't stop and take care of myself. Others were dependant on me. So I stayed and kept struggling. And continued to get worse. What I somehow realized later, even in my desperation, was that the impact of all exposures was not the same. Some exposures were debilitating, some moderate, and others slight. So I prioritized them. Those that created severe reactions I tried to avoid absolutely, knowing that it was impossible. However, by striving for perfection I greatly reduced the exposures to seldom. It took 3 years to figure out some of them. Those that weren't so severe I'd allow occasional exposures, similar to a food rotation diet. The lessor ones I didn't try to avoid because the consequences, while not really tolerable, were virtually indistinguishable from my general suffering. Besides, I couldn't stop living. It took me about 2 years to go from disabled to being able to work a tiny bit. It took another 10 years before I could work full time. But it was on my time because I couldn't work on demand. I worked when I could and that was never a typical 8 hour day. It might be 12-14 hours straight and then a 2-3 days with no activity. No one would hire me. I still can't climb mountains - at least I don't think I can - but then I have no desire to climb them. I have other activities I'd rather pursue. Was it easy? Hell no! I can remember when I was in reaction almost constantly that I'd celebrate a few good hours during a month. Years later when I was about 50/50 it was incredibly discouraging when I'd go into reaction - again - because I realized that I had 2-10 more lost days of my life. I just had to wait it out, while I intensified my avoidance again. It's now 22 years or so later and I don't have to avoid so much. It takes more to affect me, it isn't as strong, and my recovery is faster, taking minutes to hours instead of weeks or months. But I still practice avoiding and/or stopping exposure. It's the only thing that works. There is still no medication or medical treatment or high tech remedy for " what I have. " Only avoidance. I don't deliberately go into a building that will make me sick. But because that is partly how I make my living I protect myself with a respirator and other measures to reduce the exposure. If I get too reactive I take the only action that I know will work... I LEAVE! Did it make me want to puke, like you say? Absolutely. Especially when I finally figured out that the one thing I knew for certain is that what happened to me... wasn't necessary. And it's always something new. For example, 2 weeks ago I was taking a certification class. On day 3 we moved to a different room that I couldn't tolerate. I left the class until I could figure out what was going on and fix it. It was vibration from the HVAC system! Turn off the blower and I was fine. Turn it on and I was out of there in minutes. (No, it wasn't mold, it was vibration, confirmed by an acoustics expert in the class). The instructor, the class and I had to accommodate each other. I'm not sure how we did it but it happened. The key is to avoid or stop the exposure. And you may have to leave to do it. Quite frankly, what else is there? If you can't avoid it, stop it as quickly as possible, either by removing the source or removing yourself from the source. If you can't stop it a temporary action is to reduce it with ventilation, filtration or periodic absences. If that isn't enough LEAVE. What else is there? Stay? And continue the " beating? " If I were to stop avoiding exposures, I'd eventually be as sick now as I was 22 years ago. What I admire about is that he takes a stand and tells his personal story even when he knows he won't be believed, even when he knows he will be ostracized. I've only told bits and pieces of mine, until now, but never as part of taking a personal stand like does. So while he and I have differences - don't we all! - he has the courage of his convictions to state his beliefs for all to hear. And it is that stand that has finally led me to tell more of my story. Positive attitude? Yes, but that alone won't heal you. Determination? Absolutely, but that alone won't heal you. Finding the " magic bullet " through medicine, technology or belief system? Good luck. I don't expect it in my life time and I still have several decades to go. What I do have is a " knowing " that I didn't die, although some of my friends have. There is a force to live beyond my awareness and beyond my will. But some of my friends lost it. These are the " real " answers, Bob, to the real questions. There is no quick and easy diagnosis and cure. But some things help. The only reliable action is avoidance of exposure or stopping the exposure once you become aware of it. You have to diligently pay attention to figure out which exposures cause which reactions, and then prioritize them by impact. And then give your body time to heal. The major advance now, as I see it, is there are medical diagnostics and treatments available now which I didn't have two decades ago. They help some of us but not all of us and for a few contiditons, but not most. We still have to search for what woeks for us. Even if we are the only one in the world that has that experience. Next month, after my article about Christa is published in IE Connections, I'll re-post it here. We can all learn from her experience when reality suddenly changes and we have to start over again. And again. And again. Carl Grimes Healthy Habitats LLC ----- > Recently I asked for real answers to our death or life questions some > of us face. some of us are not climbing mountains. Some of us just > want to face tomorrow with a clear head and not spend all day trying > to stay alive. > > It makes me want to puke when I see answers telling people they need > to leave right now!! I came back here knowing that soon one day I will > start feeling that feeling again where life is short. I am close to > where I grew up and if I am going to die, I don't want it to be in > some strange land. I am not wishing those who gloat about climbing > mountains any ill will but just what do you think you are > accomplishing by saying this over and over? That your doctors were > wrong? If I make it through this, it will no thanks to anyone who had > the knowledge and resources to build their own motor home. I cannot > even fill out Shoemaker's complicated forms much less go the several > day trip. > > Ask me if I would smoke a joint if I knew someone who sold pot? > somehow ggetting rid of this feeling that is in my head right now > seems to be the only thing that matters right now? guess I am stupid. > > Bob FAIR USE NOTICE: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 " Carl E. Grimes " <grimes@h...> wrote: > > Bob, and others, > Only avoidance. I don't deliberately go into a building that will > make me sick. But because that is partly how I make my living I > protect myself with a respirator and other measures to reduce the > exposure. If I get too reactive I take the only action that I know > will work... > > I LEAVE! > > Did it make me want to puke, like you say? Absolutely. Especially > when I finally figured out that the one thing I knew for certain is that what happened to me... wasn't necessary. > Thanks Carl. I've lost all the usual stuff, " friends " family, relationships, jobs, my house, savings etc. etc. and it's pretty tough to find out after all of that - none of it was necessary. If the doctors had listened when I first gave them the clues, it wouldn't have happened. If I had trusted my own perceptions instead of their bad advice, it wouldn't have happened. I know this is true, because I finally lost all faith in doctors when I was at absolute rock bottom and STILL managed to crawl out of Living Hell and recover to the extent I did. It hurts to think of so much of my life that was wasted needlessly, and it comes out if I express outrage that some of the very doctors who fought with me are now charging people to give expert mold advice. I've been totally dismissed and contradicted by CFS groups who are reeking with the same mold that almost killed me. Amazingly, one of the arguments that they use to get me to go away and quit bothering them with my mold nonsense is how arrogant I am and have an obsessive " need to be right " . Ironic, that if I am, it is their rejection of my insistent attitude that might be keeping them from possibly finding out something that might make them feel a lot better. All the clues to the way I look at things is somewhere in the old messages, and what I found is that leaving isn't nearly enough - not for me. " Perception, avoidance and DECONTAMINATION " is what I keep hammering away at. The mold on my clothes, just as in many other CFSers I've seen in groups - is more than enough to keep the inflammatory response upregulated. Leaving is better than not, but not nearly good enough. The " trick " is to " break " the response before the immune system is so fired up that it creates its own damage. That's why I went to the trouble of obtaining a special " mobile decontamination device " . This is why I recovered as quickly and as well as I did - in about six months. You could accomplish the same thing in a minivan by using a bucket to wash your hair, sponge bath, and change into fresh clothes - being sure to bag the contaminated ones to prevent cross contamination. And this goes way beyond just the mold that I pick up by entering a building. Anything that has been exposed to mold is the same to me - new or not. Food or furnishings... anything! This is the kind of lifestyle I still have to maintain to avoid relapsing. I never got over being mold-sick, I just got so good at controlling it that no-one can tell anymore. If someone is made ill by mold, I find it hard to believe that taking the " extra step " to quickly decontaminate would be anything but helpful for everyone. In the groups that Bob refers to, I told all these people about my experience and talked about Mold Warriors, but it was all rejected. The louder I said that I wasn't kidding about this, the more people accused me of being arrogant and obsessive. Whenever Shoemaker was brought up and people asked if anyone had significant improvement as result of his protocols, I would tell them again what an incredible difference the " mycotoxin connection " has made for me, and the usual response was that this couldn't possibly apply to them. Some of the top CFS people complain of all the mold clues, but they've rejected extreme avoidance. Until you've experience " getting clear " and have an idea of what you are trying to accomplish, it seems crazy. But the more I insist that I'm right and that my experience as a CFS prototype should really be taken as compelling evidence that they should take an interest, the more people reject my " arrogant attitude " . So what else can I do but the same thing we did when a Hang Glider pilot who was having trouble rejected advice from more experienced pilots? We'd explain that the fact that we had been flying for so long without trouble and without crashing might suggest that we had a better technique. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 , Several comments: 1. > If I had trusted my own perceptions instead of their bad advice, > it wouldn't have happened. I think this is one of the biggest obstacles for both sides. Excuse my philosophy for a moment, it was my major after all! We are taught to NOT trust our own experience. We are taught to always defer to authorities. We are taught, and our laws and families reinforce the belief, that someone else always understands our life better than we do. We are taught to INSIST that they direct our behavoir and reinterpret our experience. Tell me what's wrong! Tell me what happened! Tell me what to do! I'm helpless without your direction! If I die it will be your fault for not saving me! Please, I know we are not all powerful and are often unable to accomplish what we should. But not acting because of being unable is not the same as not acting because we don't know or because we refuse to learn. Authorities, on the other hand, are indoctrinated with the belief that they have an obligation to direct our behavior and interpret our experience. If we resist then we are uncooperative and they can fire us from their medical practice, for example. Victims are afraid of what they cannot control. Authorities believe that they can control. Perfect match for dependance and mutual harm. In the second to last paragraph of my book I said, " My hope is that those who have been victimized can begin to experience that which they CAN control. And that public authorities will examine their fears of that which they CAN " T control. " None of this philosophizing will make us well. But perhaps it will help us to understand how to better deal with the hand we have been dealt. 2. > ...what I found is that leaving isn't nearly enough - not > for me. " Perception, avoidance and DECONTAMINATION " is what I keep > hammering away at. The mold on my clothes... You are right about this and I'm guilty of not emphasizing it. When I say " remove the source or remove yourself from the source " I don't just mean the originating source, but also the cross-contamination. So, yes, the clothes and perhaps everything else. Many of the " professional " mold remediators don't quite get it either. About a third of my consulting involves job sites where the " professional " didn't control the source sufficiently to prevent cross-contamination. Or they didn't account for it up front and removed only on the visible mold, leaving what had already spread throughout the building. 3. > The " trick " is to " break " the response before > the immune system is so fired up that it creates its own damage. Absolutely! And that is one of the indicators in my consulting, evaluating their immediate risk. If it isn't yet " broken " then there is still time, maybe. If it is " broken " then it is is too late for prevention and extra diligence is required just to stop the exposures and the continuation of harm. Any improvement is a blessing rather than an expectation. 4. > Until you've experienced " getting clear " ... I haven't heard this concept in years, yet that was fundamental to my initial guidance. In fact, that is one huge advantage of experiencing the provocation-neutralization technique. You get immediate, direct experience of how you react to a specific exposure and immediate, direct experience of how it feels to be " clear " of it. Because of my history, I had no concept of " getting clear " and re-experience additional levels of " clear " to this day. My immediate goal has always been to " do something, anything " to " get clear. " Even if I'm not successful, there is always something I can do to make at least a little improvement. That's what I meant in my earlier post about knowing when to leave a building, for example, and when I knew I was okay again. A little improvement at a time, with more setbacks than successes, was my experience for over 15 years. Where an individual is along the range from " extreme reaction " to " clear " is another indicator for my consulting. The flip side is my 6 point Personal Impact Rating. does it with her 10 point scale of 10 body systems for her QEESI evaluation. 5. We'd explain that the fact that we had been flying for so > long without trouble and without crashing might suggest that we had a > better technique. My problem with this is that I still have a hard time setting aside the shame when I can't execute the better technique. Carl Grimes Healthy Habitats LLC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 Hey , It's frustrating when we see people who are ill and are not able or not willing to understand what it is that is making them ill, when you know that you know the truth. It's like watching someone sitting in a burning building, yet not willing to get out to save themselves. But, I would think the Johova's Witnesses who knock on my door think the same thing about me. And that is probably what the CFSers are thinking of you. That your information is not based on proven fact, but simply strong " belief " . I know that what you are trying to tell them is based on scientific research supported by peer reviewed studies, but they probably don't understand that. Have you thought of just sharing with them some of the news articles that KC posts all the time from around the country? Sometimes when people read articles that are from bonified journalists, it is easier for them to see themselves and then understand that what you are saying is the truth - supported by many. Or, the other way to go is to understand that if people don't want your advice, then you can't help them in the first place - and let it go. All of us who have been around here for a long time know you have some valuable things to say. Ever thought of writing a book? Sharon In a message dated 12/21/2005 8:52:59 PM Pacific Standard Time, erikmoldwarrior@... writes: So what else can I do but the same thing we did when a Hang Glider pilot who was having trouble rejected advice from more experienced pilots? We'd explain that the fact that we had been flying for so long without trouble and without crashing might suggest that we had a better technique. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Great points Kathy, Hope is Alive! Happy Holidays to all!! Loni Kathy <kathywnb@...> wrote: Carl, Bob, and others. This is a very good post Carl, and Bob, I understand your frustration. keeps reminding us that he was also at " deaths door " as most of us have been at one time or another, or if not, have felt so bad, that we would rather be dead. This is what worked for Carl and , and I think that is great. But I do get frustrated when one person, be it an individual, doctor, or whomever keeps insisting that his/her way is the only right way. There are some who can't just leave their families espcially if they have young children dependent upon them and don't have the support of other family members. Some just don't have the energy or the money to make the change. I don't think that means that they don't want to get well. CSM has worked miracles for some, but not others. Desensitization has been life saving for some, but hurt others. Steroids are poison for most, but also have saved lives for others. I have gained valuable information from each and every poster, even if I don't agree with everything they have said. I do think that avoidance is the major factor, but there are some who don't get better even then. Maybe some who have avoided exposure and gotten well, didn't have the genetic susceptibility to make them stay sick once they were out of the environment. This illness has affected us all so differently, there is no one right answer. Maybe the New Year will bring renewed hope, and those doctors who are for us will pioneer more answers. Let's keep that hope alive for those of us who still aren't well and be happy for those who have found some success. Kathy " Carl E. Grimes " <grimes@...> wrote: Bob, and others, I understand you frustration and your anger. I've been through it. However, there is a lot of truth to what is saying that can give us hope. But when I was extremely ill, 20 some years ago, I didn't want to hear anything positive, either. It really pissed me off! I am well today primarily because of avoidance. There was no diagnosis for me so there was no specific treatment. I eventually identified three key factors. One was medical - candidiasis - and the other two were exposures. It took avoiding all three to start getting better. Overlaying that was all the reactions to everything else. I learned/created something similar to what did. But instead of calling it " extreme avoidance " I didn't call it anything, except perhaps surviving - the pain, headaches, naseau, undeniable fatigue, inability to remember let alone think, depression, when simple tasks were unbearable and tooks weeks to eventually accomplish. Answering the phone or taking out the garbagte was impossible. The loss of my business, my house, my money, my wife and all but my son. And he was sick. If I were to give what I did a name it would be a range of avoidance or priorities. I couldn't avoid everything because I was reacting to everything. I couldn't avoid reactive foods, for example, because I was reactive to all foods. But I had to eat. One food in particular would put me to sleep without me remembering I had done so. I'd wake up 3-6 hours later with no memory of lying down. It felt like I had a hangover and in a sense I did with what I now know about some of the chemistry of the body. Because I had my own business I believed I couldn't stop and take care of myself. Others were dependant on me. So I stayed and kept struggling. And continued to get worse. What I somehow realized later, even in my desperation, was that the impact of all exposures was not the same. Some exposures were debilitating, some moderate, and others slight. So I prioritized them. Those that created severe reactions I tried to avoid absolutely, knowing that it was impossible. However, by striving for perfection I greatly reduced the exposures to seldom. It took 3 years to figure out some of them. Those that weren't so severe I'd allow occasional exposures, similar to a food rotation diet. The lessor ones I didn't try to avoid because the consequences, while not really tolerable, were virtually indistinguishable from my general suffering. Besides, I couldn't stop living. It took me about 2 years to go from disabled to being able to work a tiny bit. It took another 10 years before I could work full time. But it was on my time because I couldn't work on demand. I worked when I could and that was never a typical 8 hour day. It might be 12-14 hours straight and then a 2-3 days with no activity. No one would hire me. I still can't climb mountains - at least I don't think I can - but then I have no desire to climb them. I have other activities I'd rather pursue. Was it easy? Hell no! I can remember when I was in reaction almost constantly that I'd celebrate a few good hours during a month. Years later when I was about 50/50 it was incredibly discouraging when I'd go into reaction - again - because I realized that I had 2-10 more lost days of my life. I just had to wait it out, while I intensified my avoidance again. It's now 22 years or so later and I don't have to avoid so much. It takes more to affect me, it isn't as strong, and my recovery is faster, taking minutes to hours instead of weeks or months. But I still practice avoiding and/or stopping exposure. It's the only thing that works. There is still no medication or medical treatment or high tech remedy for " what I have. " Only avoidance. I don't deliberately go into a building that will make me sick. But because that is partly how I make my living I protect myself with a respirator and other measures to reduce the exposure. If I get too reactive I take the only action that I know will work... I LEAVE! Did it make me want to puke, like you say? Absolutely. Especially when I finally figured out that the one thing I knew for certain is that what happened to me... wasn't necessary. And it's always something new. For example, 2 weeks ago I was taking a certification class. On day 3 we moved to a different room that I couldn't tolerate. I left the class until I could figure out what was going on and fix it. It was vibration from the HVAC system! Turn off the blower and I was fine. Turn it on and I was out of there in minutes. (No, it wasn't mold, it was vibration, confirmed by an acoustics expert in the class). The instructor, the class and I had to accommodate each other. I'm not sure how we did it but it happened. The key is to avoid or stop the exposure. And you may have to leave to do it. Quite frankly, what else is there? If you can't avoid it, stop it as quickly as possible, either by removing the source or removing yourself from the source. If you can't stop it a temporary action is to reduce it with ventilation, filtration or periodic absences. If that isn't enough LEAVE. What else is there? Stay? And continue the " beating? " If I were to stop avoiding exposures, I'd eventually be as sick now as I was 22 years ago. What I admire about is that he takes a stand and tells his personal story even when he knows he won't be believed, even when he knows he will be ostracized. I've only told bits and pieces of mine, until now, but never as part of taking a personal stand like does. So while he and I have differences - don't we all! - he has the courage of his convictions to state his beliefs for all to hear. And it is that stand that has finally led me to tell more of my story. Positive attitude? Yes, but that alone won't heal you. Determination? Absolutely, but that alone won't heal you. Finding the " magic bullet " through medicine, technology or belief system? Good luck. I don't expect it in my life time and I still have several decades to go. What I do have is a " knowing " that I didn't die, although some of my friends have. There is a force to live beyond my awareness and beyond my will. But some of my friends lost it. These are the " real " answers, Bob, to the real questions. There is no quick and easy diagnosis and cure. But some things help. The only reliable action is avoidance of exposure or stopping the exposure once you become aware of it. You have to diligently pay attention to figure out which exposures cause which reactions, and then prioritize them by impact. And then give your body time to heal. The major advance now, as I see it, is there are medical diagnostics and treatments available now which I didn't have two decades ago. They help some of us but not all of us and for a few contiditons, but not most. We still have to search for what woeks for us. Even if we are the only one in the world that has that experience. Next month, after my article about Christa is published in IE Connections, I'll re-post it here. We can all learn from her experience when reality suddenly changes and we have to start over again. And again. And again. Carl Grimes Healthy Habitats LLC ----- > Recently I asked for real answers to our death or life questions some > of us face. some of us are not climbing mountains. Some of us just > want to face tomorrow with a clear head and not spend all day trying > to stay alive. > > It makes me want to puke when I see answers telling people they need > to leave right now!! I came back here knowing that soon one day I will > start feeling that feeling again where life is short. I am close to > where I grew up and if I am going to die, I don't want it to be in > some strange land. I am not wishing those who gloat about climbing > mountains any ill will but just what do you think you are > accomplishing by saying this over and over? That your doctors were > wrong? If I make it through this, it will no thanks to anyone who had > the knowledge and resources to build their own motor home. I cannot > even fill out Shoemaker's complicated forms much less go the several > day trip. > > Ask me if I would smoke a joint if I knew someone who sold pot? > somehow ggetting rid of this feeling that is in my head right now > seems to be the only thing that matters right now? guess I am stupid. > > Bob FAIR USE NOTICE: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 We all have to fly on our own. - I agree. It's just tough though, to watch those who are trying to fly when they are currently breathing in fuel fumes, are at the lowest fuel level they have ever been, and they are flying off course without a designated flight path! But I don't recall anyone appointing me Mold Empress of the World, so I really don't get to control the situation. Sometimes I just want to close my eyes so as not to witness the crash. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 snk1955@a... wrote: > Hey , It's frustrating when we see people who are ill and are not able or not willing to understand what it is that is making them ill, when you know that you know the truth. It's like watching someone sitting in a burning building, yet not willing to get out to save themselves. Or, the other way to go is to understand that if people don't want your advice, then you can't help them in the first place - and let it go. Sharon We Hang Glider instructors would ask ourselves what our moral responsibility is to prevent dangerously inexperienced people who are out " free flying " from killing themselves through their own ignorance. If we ignore their obvious problems and dangerous habits and say nothing, are we guilty of malfeasance or morally responsible when they crash? If we try to offer advice but someone refuses to take our cautions seriously, thinking " You're just trying to drum up business " , how aggressively should we pursue trying to warn them that they don't even see how close to disaster they are operating? Hang Gliding is an activity in which people have to take great responsibility for themselves to seek out the information necessary to stay alive. " What you don't know will definitely kill you " We came to the conclusion that our responsibilty consists of at least giving a strong warning, but if it is ignored, we're pretty much off the hook and don't have to feel bad if someone crashes. So if you look back over my entire approach in this group, that's how I try to present information. I don't tell people what to do, and I don't say that my experience necessarily applies. I've always said that reactivities are different and each person has to tailor a strategy to their own level - dictated by individual variables of their situation. I really don't know where " One size fits all " came from. I don't even apply that concept to myself, since my reactivity varies according to where I am on " the power curve of exposure " . Carl's Personal Impact Rating scales are great, and I find that the " drop off " between the levels in accordance with the severity of the immune dysfunction. If you can conduct avoidance well enough to move yourself up a notch on the scale, the strategy you followed to get there no longer applies - and less work needs to be put into avoidance. Once I put out a bit of information in this group, and it is ignored, I just conclude that people must be operating at a different level and do not consider it relevant to their degree of illness. Either that, or they didn't recognize the significance of what I was trying to express. But at least I can say that the warning was given, so I have no problems or moral responsibility when people decide to let it pass. Recently we had the discussion on pillows and I said that controlling cross contamination on a pillows which cannot be washed is so problematic that I never use a pillow and substitute materials that are more easily decontaminated. The discussion did not pursue this line of thinking and went on to various other options of which type of pillows are less likely to be a problem. This is an extremely important variable and source of exposure for me, but if others do not consider it to be relevant, that is their choice - and it is their right to make that decision. Sometimes I felt sure enough of my abilities as a pilot to launch into conditions that others felt were unsafe and that no-one should be flying at all. They even pondered if it would be correct to try and stop me since fatalities tend to be spectacular and give the sport a bad name, but decided that the freedom of the skies and personal liberty means that to fly or not was my choice - and it was mainly my life that was at stake anyway. I do appreciate others advice and warnings, and try to take them into consideration, but at the same time, my choices are my own to make. Fortunately for me, it always turned out that I was operating the aircraft within my level of expertise, even if the conditions were excessively demanding at times. I have done my best to ensure that everything I have offered in this group has been in that spirit and just give people the option to take my advice, or not. We all have to fly on our own. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 Sharon, you have my vote for mold empress! --- snk1955@... wrote: > > > We all have to fly on our own. > > - > I agree. It's just tough though, to watch those who > are trying to fly when > they are currently breathing in fuel fumes, are at > the lowest fuel level they > have ever been, and they are flying off course > without a designated flight > path! But I don't recall anyone appointing me > Mold Empress of the World, so > I really don't get to control the situation. > > Sometimes I just want to close my eyes so as not to > witness the crash. > > Sharon > > > > > [Non-text portions of this message have been > removed] > > > > __________________________________ for Good - Make a difference this year. http://brand./cybergivingweek2005/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2005 Report Share Posted December 24, 2005 I DTTO THAT....LOL! SW -- Re: [] Re: Answers & Avoidance Sharon, you have my vote for mold empress! --- snk1955@... wrote: > > > We all have to fly on our own. > > - > I agree. It's just tough though, to watch those who > are trying to fly when > they are currently breathing in fuel fumes, are at > the lowest fuel level they > have ever been, and they are flying off course > without a designated flight > path! But I don't recall anyone appointing me > Mold Empress of the World, so > I really don't get to control the situation. > > Sometimes I just want to close my eyes so as not to > witness the crash. > > Sharon > > > > > [Non-text portions of this message have been > removed] > > > > __________________________________ for Good - Make a difference this year. http://brand./cybergivingweek2005/ Quote Link to comment Share on other sites More sharing options...
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