Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 , you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: " House " - slight topic change > > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is. > > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important). > > , Mom to 18 yo daughter UC 6/95, PSC 3/09. > > > > > ________________________________ > > T > It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Everyone..... We are all under pressure right now in this world we live in....We ALL have to give and give in to things we can't control...Please see this video...I'm not always a fan of his...and haven't read his book yet? http://abcnews.go.com/GMA/story?id=7223895 & page=1 But people, even though we all are "wired" differently....we All have to figure out how we can get along better...If anyone has the answer please let us in on it! Peace and God bless! (and no I'm not a old hippie) in fact I'm a former old dumb @ss yuppie Conservative from Orange county California! Don B....PCS / UC 11-08 Subject: communicatingTo: Date: Thursday, April 2, 2009, 1:53 AM ,you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: "House" - slight topic change> > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.> > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important).> > , Mom to 18 yo daughter UC 6/95, PSC 3/09.> > > > > ____________ _________ _________ __> From: Logan Berg <cswb (AT) safelink (DOT) net>> T> It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Everyone..... We are all under pressure right now in this world we live in....We ALL have to give and give in to things we can't control...Please see this video...I'm not always a fan of his...and haven't read his book yet? http://abcnews.go.com/GMA/story?id=7223895 & page=1 But people, even though we all are "wired" differently....we All have to figure out how we can get along better...If anyone has the answer please let us in on it! Peace and God bless! (and no I'm not a old hippie) in fact I'm a former old dumb @ss yuppie Conservative from Orange county California! Don B....PCS / UC 11-08 Subject: communicatingTo: Date: Thursday, April 2, 2009, 1:53 AM ,you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: "House" - slight topic change> > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.> > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important).> > , Mom to 18 yo daughter UC 6/95, PSC 3/09.> > > > > ____________ _________ _________ __> From: Logan Berg <cswb (AT) safelink (DOT) net>> T> It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Everyone..... We are all under pressure right now in this world we live in....We ALL have to give and give in to things we can't control...Please see this video...I'm not always a fan of his...and haven't read his book yet? http://abcnews.go.com/GMA/story?id=7223895 & page=1 But people, even though we all are "wired" differently....we All have to figure out how we can get along better...If anyone has the answer please let us in on it! Peace and God bless! (and no I'm not a old hippie) in fact I'm a former old dumb @ss yuppie Conservative from Orange county California! Don B....PCS / UC 11-08 Subject: communicatingTo: Date: Thursday, April 2, 2009, 1:53 AM ,you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: "House" - slight topic change> > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.> > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important).> > , Mom to 18 yo daughter UC 6/95, PSC 3/09.> > > > > ____________ _________ _________ __> From: Logan Berg <cswb (AT) safelink (DOT) net>> T> It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Boy to I agree with you. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. Email is an excellent form of communicaton but it is very difficult to get your point accross since people persceive things differently. I often have this concern with my clients. I try to be careful what I say in email form. Lori A. "Aggressively Pursuing Solutions To Your Real Estate Needs!" First Weber Group Cell: 1507 E. Sunset Drive Waukesha, WI 53189 LoriUSA@... www.Lori.FirstWeber.com Click here To: Sent: Thursday, April 2, 2009 12:51:32 PMSubject: Re: communicating Everyone.... . We are all under pressure right now in this world we live in....We ALL have to give and give in to things we can't control...Please see this video...I'm not always a fan of his...and haven't read his book yet? http://abcnews. go.com/GMA/ story?id= 7223895 & page=1 But people, even though we all are "wired" differently. ...we All have to figure out how we can get along better...If anyone has the answer please let us in on it! Peace and God bless! (and no I'm not a old hippie) in fact I'm a former old dumb @ss yuppie Conservative from Orange county California! Don B....PCS / UC 11-08 From: Logan Berg <cswb (AT) safelink (DOT) net>Subject: communicatingTo: @ yahoogroups. comDate: Thursday, April 2, 2009, 1:53 AM ,you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: "House" - slight topic change> > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.> > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important).> > , Mom to 18 yo daughter UC 6/95, PSC 3/09.> > > > > ____________ _________ _________ __> From: Logan Berg <cswb (AT) safelink (DOT) net>> T> It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Boy to I agree with you. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. Email is an excellent form of communicaton but it is very difficult to get your point accross since people persceive things differently. I often have this concern with my clients. I try to be careful what I say in email form. Lori A. "Aggressively Pursuing Solutions To Your Real Estate Needs!" First Weber Group Cell: 1507 E. Sunset Drive Waukesha, WI 53189 LoriUSA@... www.Lori.FirstWeber.com Click here To: Sent: Thursday, April 2, 2009 12:51:32 PMSubject: Re: communicating Everyone.... . We are all under pressure right now in this world we live in....We ALL have to give and give in to things we can't control...Please see this video...I'm not always a fan of his...and haven't read his book yet? http://abcnews. go.com/GMA/ story?id= 7223895 & page=1 But people, even though we all are "wired" differently. ...we All have to figure out how we can get along better...If anyone has the answer please let us in on it! Peace and God bless! (and no I'm not a old hippie) in fact I'm a former old dumb @ss yuppie Conservative from Orange county California! Don B....PCS / UC 11-08 From: Logan Berg <cswb (AT) safelink (DOT) net>Subject: communicatingTo: @ yahoogroups. comDate: Thursday, April 2, 2009, 1:53 AM ,you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: "House" - slight topic change> > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.> > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important).> > , Mom to 18 yo daughter UC 6/95, PSC 3/09.> > > > > ____________ _________ _________ __> From: Logan Berg <cswb (AT) safelink (DOT) net>> T> It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Boy to I agree with you. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. Email is an excellent form of communicaton but it is very difficult to get your point accross since people persceive things differently. I often have this concern with my clients. I try to be careful what I say in email form. Lori A. "Aggressively Pursuing Solutions To Your Real Estate Needs!" First Weber Group Cell: 1507 E. Sunset Drive Waukesha, WI 53189 LoriUSA@... www.Lori.FirstWeber.com Click here To: Sent: Thursday, April 2, 2009 12:51:32 PMSubject: Re: communicating Everyone.... . We are all under pressure right now in this world we live in....We ALL have to give and give in to things we can't control...Please see this video...I'm not always a fan of his...and haven't read his book yet? http://abcnews. go.com/GMA/ story?id= 7223895 & page=1 But people, even though we all are "wired" differently. ...we All have to figure out how we can get along better...If anyone has the answer please let us in on it! Peace and God bless! (and no I'm not a old hippie) in fact I'm a former old dumb @ss yuppie Conservative from Orange county California! Don B....PCS / UC 11-08 From: Logan Berg <cswb (AT) safelink (DOT) net>Subject: communicatingTo: @ yahoogroups. comDate: Thursday, April 2, 2009, 1:53 AM ,you took offense where none was intended. I can think of only two reasons why any of us are on this site: to find help and to offer help. No one purposely means to hurt someone else. This has been a topic on and off for years. We can't see facial expressions, body language, or hear the tone of another's voice. We read other's words and interpret them. We can't control how others receive them. You have written about your daughter's symptoms repeatedly in a way that I thought you felt your daughter was nearer end-stage than her symptoms would indicate. If you don't care for someone's advice ignore it. About the freshman stress. I still mean it. There are adjustments everyone has to make as college students living away from home. I think that is a part of all young PSCers challenges. No one can separate the PSC from other health issues and mental health issues and socialogical issues and spiritual issues. The way you wrote your posts talked about only the illness causing problems. My personal experience in this support group and others I have belonged to is that we intend to speak about particular experiences or ask certain questions or just vent and then we become surprised or offended when others respond in a way we never thought they would. I seldom answer or respond to people like I did with you. But I recognized some traits that I have had myself that have caused me additional problems. My friends here have helped me understand how I was coming across. I honestly don't have the energy to explain all of these right now. Just as I don't know what you have gone through with your daughter, you know very little about me. I will tell you that I have been fighting the same battles that you have both on my behalf and my children's for longer than your daughter's been alive. I sincerely hope you do find more peace and your daughter can find her level of activity. Stress makes the symptoms of this disease more pronounced. I think it also speeds up the destructive processes. When I can see the stress my health causes in the lives of my family, I feel guilt. Your daughter will sense your frustrations. how she will respond I don't know, maybe you do. Remember we are either people with this disease (which I am) or we are caregivers to someone with it. These are two very difficult senarios to deal with. I meant no offense. Take care Cheryl ID PSC/UC 50 yrs, six children. PS if you would like to talk about any of this further, you may e-mail me privately. Re: "House" - slight topic change> > I know you are trying to be helpful, but you don't know my daughter or how she handled the transition to college. I'll also acknowledge that I'm probably still reacting to having to take the diagnostic lead because her doctor refused to take my concerns seriously - the third time in her life she has had a serious illness when I had to fight to get the doctor to recognize that something serious was going on - the first was UC, when for a year her GP refused to give me a referral to a GI doc. With that history (particularly the very recent diagnostic history) I am a bit tender at the suggestion that I what I am seeing isn't really what I think it is.> > > > No - I don't think she is near end stage, but I had been hoping we were in the very early stages since she was only diagnosed because I browbeat her doctor into continuing to look for a cause when he was sure that her low numbers meant nothing serious was wrong. If the low numbers were a dip after a peak, she may be farther along than I had hoped - so I am interested in learning about this phenomenon to see how it fits with what we have observed (since I can't make her doctor go back and do the tests I had requested that he do all along, but he didn't think were important).> > , Mom to 18 yo daughter UC 6/95, PSC 3/09.> > > > > ____________ _________ _________ __> From: Logan Berg <cswb (AT) safelink (DOT) net>> T> It seems you are blaming too many things on the disease. your daughter has been diagnosed with a life altering disease, she is a freshman. Many, many freshmans feel overload and fatigue, insomnia, reasoning problems etc, and they don't have liver disease. It could be the fatigue (which is any stage liver disease) and overwhelming changes in her life that are causing the thingking problems. If your daughter is near end stage, she will be having edema, ascities, bleeding varicies, jaundice, ataxia (hand flapping), changes in amonia, creatinine. take care, hope your daughter can get through this semester and find her level. Cheryl ID PSC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 I am a mom of a son who is almost 17 and has PSC. He is fatigued to the point of not being able to do his school work more days than not. This has been going on all school year. We homeschool and have for 9 years. I'm an educator and decided with my husband to be the main educator for our sons. This has been a struggle for Tyler. He's so fatigued but at the same time has the sleep cycle problems that prevent a good nights rest. All that said to say that I understand the confusion, pain, fatigue that your daughter experiences. I've seen it in Tyler. His is not depression or stress related...it is directly related to PSC and has been his major symptom along with itching from the beginning. Also, I so very much understand how you are feeling as a mom/caregiver of a child with PSC. We are also the parents of a healthy freshman in college, Matt, who is Tyler's older brother. I see his fatigue that is stress related. It's completely different from Tyler's fatigue with PSC. A mom see and understands this. I believe that there's a huge difference in being an adult with PSC and a teen with it. Tyler was active in sports and just constantly on the move before he got ill in Oct. 2006. He was diagnosed at stage 3 then. He's progressed to stage 4 with 3 renal cysts and portal hypertension in addition to PSC in only 2 1/2 years. I also understand how stressed as a mom/caregiver and our entire family is with living with a loved one who is sick with chronic illness. I know the sense of defensiveness when you are questioned on what you know is true for your child in this circumstance. I've felt it and you don't have to apologize for it. We caregivers understand. I agree that email is vague and lacks the benefit of tone and facial expression. But, I also believe that we should be more sensitive to the feelings of others when we can obviously read in the tone the stress and love that is felt for the family member with PSC. I don't post often. I have strong feelings often and chose to stay out of most discussions like this one. But, I'm a mom who has had to advocate in the face of the medical profession that lacks compassion and understanding of this disease as well. , I so very much understand what you are going through and what you and your daughter are feeling.... is the main message I'd like to leave with you and the group. I've been around long enough to know that sometimes even well meaning folks say or type things they should have kept to themselves. Welcome to the group....and prayers that your daughters strength and clarity return more frequently. Cindy, mom to Tyler age 16, PSC dx Oct 2006 New Low Prices on Dell Laptops - Starting at $399 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 I am a mom of a son who is almost 17 and has PSC. He is fatigued to the point of not being able to do his school work more days than not. This has been going on all school year. We homeschool and have for 9 years. I'm an educator and decided with my husband to be the main educator for our sons. This has been a struggle for Tyler. He's so fatigued but at the same time has the sleep cycle problems that prevent a good nights rest. All that said to say that I understand the confusion, pain, fatigue that your daughter experiences. I've seen it in Tyler. His is not depression or stress related...it is directly related to PSC and has been his major symptom along with itching from the beginning. Also, I so very much understand how you are feeling as a mom/caregiver of a child with PSC. We are also the parents of a healthy freshman in college, Matt, who is Tyler's older brother. I see his fatigue that is stress related. It's completely different from Tyler's fatigue with PSC. A mom see and understands this. I believe that there's a huge difference in being an adult with PSC and a teen with it. Tyler was active in sports and just constantly on the move before he got ill in Oct. 2006. He was diagnosed at stage 3 then. He's progressed to stage 4 with 3 renal cysts and portal hypertension in addition to PSC in only 2 1/2 years. I also understand how stressed as a mom/caregiver and our entire family is with living with a loved one who is sick with chronic illness. I know the sense of defensiveness when you are questioned on what you know is true for your child in this circumstance. I've felt it and you don't have to apologize for it. We caregivers understand. I agree that email is vague and lacks the benefit of tone and facial expression. But, I also believe that we should be more sensitive to the feelings of others when we can obviously read in the tone the stress and love that is felt for the family member with PSC. I don't post often. I have strong feelings often and chose to stay out of most discussions like this one. But, I'm a mom who has had to advocate in the face of the medical profession that lacks compassion and understanding of this disease as well. , I so very much understand what you are going through and what you and your daughter are feeling.... is the main message I'd like to leave with you and the group. I've been around long enough to know that sometimes even well meaning folks say or type things they should have kept to themselves. Welcome to the group....and prayers that your daughters strength and clarity return more frequently. Cindy, mom to Tyler age 16, PSC dx Oct 2006 New Low Prices on Dell Laptops - Starting at $399 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 I am a mom of a son who is almost 17 and has PSC. He is fatigued to the point of not being able to do his school work more days than not. This has been going on all school year. We homeschool and have for 9 years. I'm an educator and decided with my husband to be the main educator for our sons. This has been a struggle for Tyler. He's so fatigued but at the same time has the sleep cycle problems that prevent a good nights rest. All that said to say that I understand the confusion, pain, fatigue that your daughter experiences. I've seen it in Tyler. His is not depression or stress related...it is directly related to PSC and has been his major symptom along with itching from the beginning. Also, I so very much understand how you are feeling as a mom/caregiver of a child with PSC. We are also the parents of a healthy freshman in college, Matt, who is Tyler's older brother. I see his fatigue that is stress related. It's completely different from Tyler's fatigue with PSC. A mom see and understands this. I believe that there's a huge difference in being an adult with PSC and a teen with it. Tyler was active in sports and just constantly on the move before he got ill in Oct. 2006. He was diagnosed at stage 3 then. He's progressed to stage 4 with 3 renal cysts and portal hypertension in addition to PSC in only 2 1/2 years. I also understand how stressed as a mom/caregiver and our entire family is with living with a loved one who is sick with chronic illness. I know the sense of defensiveness when you are questioned on what you know is true for your child in this circumstance. I've felt it and you don't have to apologize for it. We caregivers understand. I agree that email is vague and lacks the benefit of tone and facial expression. But, I also believe that we should be more sensitive to the feelings of others when we can obviously read in the tone the stress and love that is felt for the family member with PSC. I don't post often. I have strong feelings often and chose to stay out of most discussions like this one. But, I'm a mom who has had to advocate in the face of the medical profession that lacks compassion and understanding of this disease as well. , I so very much understand what you are going through and what you and your daughter are feeling.... is the main message I'd like to leave with you and the group. I've been around long enough to know that sometimes even well meaning folks say or type things they should have kept to themselves. Welcome to the group....and prayers that your daughters strength and clarity return more frequently. Cindy, mom to Tyler age 16, PSC dx Oct 2006 New Low Prices on Dell Laptops - Starting at $399 Quote Link to comment Share on other sites More sharing options...
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