Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Bruce I don't think Leanne clarified it. The results of the poll were to have CG on this board. She does not want to combine boards. So poll is ignored and we resume what we have now, which created the problem? Hmmmmm. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Patients vs Caregivers>>> There is currently a debate going on whether to allow caregivers onthe patient site or vice-versa. As the owner of the site and therepresentative of the Pulmonary Fibrosis Foundation which sponsors thissite, I would like to explain the reasoning behind our decision to keepthe members separated according to their situation.>> Each group has their own set of feelings, fears frustrations, etc.that they must face and work through. A caregiver, no matter how muchthey read, can never know what it is like to be a patient andvice-versa.>> Each patient is different, some dwell on their disease others livetheir lives as if there was nothing wrong with them and every shade ofgray in between. The only way to understand an individual, whether apatient or a caregiver, is to communicate. A patient may not want todiscuss his/her thoughts and feelings. He/she may be hiding his/herfears and frustrations for the sake of the family, or some other reason,or maybe he/she just doesn't have any fears or frustrations. This goesfor the Caregiver as well.>> Bottom line. The board is an On line Support group. Underline Support.We are here to support each other the best way that we can. It'ssupposed to be a safe place to vent and share stories, concerns,whatever is on your mind. It is not the end all and be all for everyone.If you don't like someone or the way they respond or ??, you can deleteand not read them. If you have an issue with someone personally, you canemail them personally. Issues can be addressed discreetly off the board.>> In the patient poll, people have responded favorably that they wouldlike to include Caregivers. If this is truly how everyone feels, thiswould mean that we would open the group to everyone. The two groupswould be merged. Right now patients are referred to the patient groupand caregivers are referred to the caregiver group. We would not justhave the few caregivers that are currently on our board. Honestly, Idon't want that. I would like to keep the groups as separate aspossible. I understand that there may be a caregiver or two who may wantto get a different patient perspective or just have a question, but thatis extremely hard to moderate. Honestly, I don't think the caregiverswould want the patients on their board, but I for one, am not pollingthem.>> I'm as Christian as the next person and I truly want to do what'sright for US. This is OUR board. Hence the poll. I'm sorry that itstirred up so many pots. We have so much other "stuff" to deal with andI didn't realize that I stirred up a hornet's nest. I've learnedthroughout my life that people take things personally. A friend of mineonce said, it's because were a person. We're human. We're dealing with aterminal illness on both sides doing the best we can each and every day.Some days are better than others.>> But, we will put this behind us and we will be a stronger boardbecause of it. I've been so blessed to have this Board in my life. Ithas helped me through so many rough times. I've personally met friends Iwill have for life. I am so blessed. Can we please put this situationbehind us and move forward from here?>> Leanne> Owner - Breathe Support Groups> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Sher No, there is no problem at all unless people turn it into one. I have no problem, never have a problem and never will. Now intolerance and ugliness and people wanting their own way will lead to problems and I hope that is completely over. Be sure that my comments are not aimed at anyone, just the overall mood of what I saw. But there is no issue unless one chooses to make one. I was told long ago my posts were too long. The answer I relayed is simple....don't read them. Thats a choice with anyone's posts. So, its over, life goes on. I don't want my social and support home to include bickering and pettiness. > > > > Leanne... will you please clear up one thing? > > You say the consensus is to allow CG...yet you say you do not want to > merge the boards. Will you clarify what the decision is please? One > board or two and if it's two, will you clarify that as well? > > Thanks! > > > > MamaSher, age 69. IPF 3-06, OR. > > Don't fret about tomorrow, God is already there! > > Patients vs Caregivers > > > > > > There is currently a debate going on whether to allow caregivers on > the patient site or vice-versa. As the owner of the site and the > representative of the Pulmonary Fibrosis Foundation which sponsors this > site, I would like to explain the reasoning behind our decision to keep > the members separated according to their situation. > > > > Each group has their own set of feelings, fears frustrations, etc. > that they must face and work through. A caregiver, no matter how much > they read, can never know what it is like to be a patient and > vice-versa. > > > > Each patient is different, some dwell on their disease others live > their lives as if there was nothing wrong with them and every shade of > gray in between. The only way to understand an individual, whether a > patient or a caregiver, is to communicate. A patient may not want to > discuss his/her thoughts and feelings. He/she may be hiding his/her > fears and frustrations for the sake of the family, or some other reason, > or maybe he/she just doesn't have any fears or frustrations. This goes > for the Caregiver as well. > > > > Bottom line. The board is an On line Support group. Underline Support. > We are here to support each other the best way that we can. It's > supposed to be a safe place to vent and share stories, concerns, > whatever is on your mind. It is not the end all and be all for everyone. > If you don't like someone or the way they respond or ??, you can delete > and not read them. If you have an issue with someone personally, you can > email them personally. Issues can be addressed discreetly off the board. > > > > In the patient poll, people have responded favorably that they would > like to include Caregivers. If this is truly how everyone feels, this > would mean that we would open the group to everyone. The two groups > would be merged. Right now patients are referred to the patient group > and caregivers are referred to the caregiver group. We would not just > have the few caregivers that are currently on our board. Honestly, I > don't want that. I would like to keep the groups as separate as > possible. I understand that there may be a caregiver or two who may want > to get a different patient perspective or just have a question, but that > is extremely hard to moderate. Honestly, I don't think the caregivers > would want the patients on their board, but I for one, am not polling > them. > > > > I'm as Christian as the next person and I truly want to do what's > right for US. This is OUR board. Hence the poll. I'm sorry that it > stirred up so many pots. We have so much other " stuff " to deal with and > I didn't realize that I stirred up a hornet's nest. I've learned > throughout my life that people take things personally. A friend of mine > once said, it's because were a person. We're human. We're dealing with a > terminal illness on both sides doing the best we can each and every day. > Some days are better than others. > > > > But, we will put this behind us and we will be a stronger board > because of it. I've been so blessed to have this Board in my life. It > has helped me through so many rough times. I've personally met friends I > will have for life. I am so blessed. Can we please put this situation > behind us and move forward from here? > > > > Leanne > > Owner - Breathe Support Groups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Sher No, there is no problem at all unless people turn it into one. I have no problem, never have a problem and never will. Now intolerance and ugliness and people wanting their own way will lead to problems and I hope that is completely over. Be sure that my comments are not aimed at anyone, just the overall mood of what I saw. But there is no issue unless one chooses to make one. I was told long ago my posts were too long. The answer I relayed is simple....don't read them. Thats a choice with anyone's posts. So, its over, life goes on. I don't want my social and support home to include bickering and pettiness. > > > > Leanne... will you please clear up one thing? > > You say the consensus is to allow CG...yet you say you do not want to > merge the boards. Will you clarify what the decision is please? One > board or two and if it's two, will you clarify that as well? > > Thanks! > > > > MamaSher, age 69. IPF 3-06, OR. > > Don't fret about tomorrow, God is already there! > > Patients vs Caregivers > > > > > > There is currently a debate going on whether to allow caregivers on > the patient site or vice-versa. As the owner of the site and the > representative of the Pulmonary Fibrosis Foundation which sponsors this > site, I would like to explain the reasoning behind our decision to keep > the members separated according to their situation. > > > > Each group has their own set of feelings, fears frustrations, etc. > that they must face and work through. A caregiver, no matter how much > they read, can never know what it is like to be a patient and > vice-versa. > > > > Each patient is different, some dwell on their disease others live > their lives as if there was nothing wrong with them and every shade of > gray in between. The only way to understand an individual, whether a > patient or a caregiver, is to communicate. A patient may not want to > discuss his/her thoughts and feelings. He/she may be hiding his/her > fears and frustrations for the sake of the family, or some other reason, > or maybe he/she just doesn't have any fears or frustrations. This goes > for the Caregiver as well. > > > > Bottom line. The board is an On line Support group. Underline Support. > We are here to support each other the best way that we can. It's > supposed to be a safe place to vent and share stories, concerns, > whatever is on your mind. It is not the end all and be all for everyone. > If you don't like someone or the way they respond or ??, you can delete > and not read them. If you have an issue with someone personally, you can > email them personally. Issues can be addressed discreetly off the board. > > > > In the patient poll, people have responded favorably that they would > like to include Caregivers. If this is truly how everyone feels, this > would mean that we would open the group to everyone. The two groups > would be merged. Right now patients are referred to the patient group > and caregivers are referred to the caregiver group. We would not just > have the few caregivers that are currently on our board. Honestly, I > don't want that. I would like to keep the groups as separate as > possible. I understand that there may be a caregiver or two who may want > to get a different patient perspective or just have a question, but that > is extremely hard to moderate. Honestly, I don't think the caregivers > would want the patients on their board, but I for one, am not polling > them. > > > > I'm as Christian as the next person and I truly want to do what's > right for US. This is OUR board. Hence the poll. I'm sorry that it > stirred up so many pots. We have so much other " stuff " to deal with and > I didn't realize that I stirred up a hornet's nest. I've learned > throughout my life that people take things personally. A friend of mine > once said, it's because were a person. We're human. We're dealing with a > terminal illness on both sides doing the best we can each and every day. > Some days are better than others. > > > > But, we will put this behind us and we will be a stronger board > because of it. I've been so blessed to have this Board in my life. It > has helped me through so many rough times. I've personally met friends I > will have for life. I am so blessed. Can we please put this situation > behind us and move forward from here? > > > > Leanne > > Owner - Breathe Support Groups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Leanne clarified...that was all I asked for. Over. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Patients vs Caregivers> >> >> > There is currently a debate going on whether to allow caregivers on> the patient site or vice-versa. As the owner of the site and the> representative of the Pulmonary Fibrosis Foundation which sponsorsthis> site, I would like to explain the reasoning behind our decision tokeep> the members separated according to their situation.> >> > Each group has their own set of feelings, fears frustrations, etc.> that they must face and work through. A caregiver, no matter how much> they read, can never know what it is like to be a patient and> vice-versa.> >> > Each patient is different, some dwell on their disease others live> their lives as if there was nothing wrong with them and every shade of> gray in between. The only way to understand an individual, whether a> patient or a caregiver, is to communicate. A patient may not want to> discuss his/her thoughts and feelings. He/she may be hiding his/her> fears and frustrations for the sake of the family, or some otherreason,> or maybe he/she just doesn't have any fears or frustrations. This goes> for the Caregiver as well.> >> > Bottom line. The board is an On line Support group. UnderlineSupport.> We are here to support each other the best way that we can. It's> supposed to be a safe place to vent and share stories, concerns,> whatever is on your mind. It is not the end all and be all foreveryone.> If you don't like someone or the way they respond or ??, you candelete> and not read them. If you have an issue with someone personally, youcan> email them personally. Issues can be addressed discreetly off theboard.> >> > In the patient poll, people have responded favorably that they would> like to include Caregivers. If this is truly how everyone feels, this> would mean that we would open the group to everyone. The two groups> would be merged. Right now patients are referred to the patient group> and caregivers are referred to the caregiver group. We would not just> have the few caregivers that are currently on our board. Honestly, I> don't want that. I would like to keep the groups as separate as> possible. I understand that there may be a caregiver or two who maywant> to get a different patient perspective or just have a question, butthat> is extremely hard to moderate. Honestly, I don't think the caregivers> would want the patients on their board, but I for one, am not polling> them.> >> > I'm as Christian as the next person and I truly want to do what's> right for US. This is OUR board. Hence the poll. I'm sorry that it> stirred up so many pots. We have so much other "stuff" to deal withand> I didn't realize that I stirred up a hornet's nest. I've learned> throughout my life that people take things personally. A friend ofmine> once said, it's because were a person. We're human. We're dealing witha> terminal illness on both sides doing the best we can each and everyday.> Some days are better than others.> >> > But, we will put this behind us and we will be a stronger board> because of it. I've been so blessed to have this Board in my life. It> has helped me through so many rough times. I've personally met friendsI> will have for life. I am so blessed. Can we please put this situation> behind us and move forward from here?> >> > Leanne> > Owner - Breathe Support Groups> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Sher, Please, drop it! Please! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > Leanne... will you please clear up one thing?> > You say the consensus is to allow CG...yet you say you do not want to> merge the boards. Will you clarify what the decision is please? One> board or two and if it's two, will you clarify that as well?> > Thanks!> >> > MamaSher, age 69. IPF 3-06, OR.> > Don't fret about tomorrow, God is already there!> > Patients vs Caregivers> >> >> > There is currently a debate going on whether to allow caregivers on> the patient site or vice-versa. As the owner of the site and the> representative of the Pulmonary Fibrosis Foundation which sponsors this> site, I would like to explain the reasoning behind our decision to keep> the members separated according to their situation.> >> > Each group has their own set of feelings, fears frustrations, etc.> that they must face and work through. A caregiver, no matter how much> they read, can never know what it is like to be a patient and> vice-versa.> >> > Each patient is different, some dwell on their disease others live> their lives as if there was nothing wrong with them and every shade of> gray in between. The only way to understand an individual, whether a> patient or a caregiver, is to communicate. A patient may not want to> discuss his/her thoughts and feelings. He/she may be hiding his/her> fears and frustrations for the sake of the family, or some other reason,> or maybe he/she just doesn't have any fears or frustrations. This goes> for the Caregiver as well.> >> > Bottom line. The board is an On line Support group. Underline Support.> We are here to support each other the best way that we can. It's> supposed to be a safe place to vent and share stories, concerns,> whatever is on your mind. It is not the end all and be all for everyone.> If you don't like someone or the way they respond or ??, you can delete> and not read them. If you have an issue with someone personally, you can> email them personally. Issues can be addressed discreetly off the board.> >> > In the patient poll, people have responded favorably that they would> like to include Caregivers. If this is truly how everyone feels, this> would mean that we would open the group to everyone. The two groups> would be merged. Right now patients are referred to the patient group> and caregivers are referred to the caregiver group. We would not just> have the few caregivers that are currently on our board. Honestly, I> don't want that. I would like to keep the groups as separate as> possible. I understand that there may be a caregiver or two who may want> to get a different patient perspective or just have a question, but that> is extremely hard to moderate. Honestly, I don't think the caregivers> would want the patients on their board, but I for one, am not polling> them.> >> > I'm as Christian as the next person and I truly want to do what's> right for US. This is OUR board. Hence the poll. I'm sorry that it> stirred up so many pots. We have so much other "stuff" to deal with and> I didn't realize that I stirred up a hornet's nest. I've learned> throughout my life that people take things personally. A friend of mine> once said, it's because were a person. We're human. We're dealing with a> terminal illness on both sides doing the best we can each and every day.> Some days are better than others.> >> > But, we will put this behind us and we will be a stronger board> because of it. I've been so blessed to have this Board in my life. It> has helped me through so many rough times. I've personally met friends I> will have for life. I am so blessed. Can we please put this situation> behind us and move forward from here?> >> > Leanne> > Owner - Breathe Support Groups> >> Quote Link to comment Share on other sites More sharing options...
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