Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Jack and Kerry, Amen to your posts.. PF patient and their caregivers are a team. I voted a big resounding YES. Gale in TX IPF 10/06 > > Kerry, > Thank God you didn't hold your tongue. I agree with you totally.. This group has been my education as well as, in some ways, my salvation. To exclude caregivers is an abomination and a clearly un- Christian thing to do. Dealing with this disease is one thing, but to be a caregiver and have no knowledge or guidance must be hell. > I don't understand the necessity of the poll, and I hope that it is a big YES for the carefivers. > And Kerry, keep that tongue going. > Jack > > > Caregivers > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline. > > Apologies in advance for not holding my tongue, > Kerry > 37 IPF '01 S. IN > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 We must be having sunspots (not that we ever see the sun in WA) or yahoo went bonkers. I Can't read joy's or scotts msgs. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: CaregiversDate: Thu, 05 Jun 2008 18:59:25 -0000 whre is this?Joy in Seattle> > Subject: Caregivers> To: Breathe-Support > Date: Thursday, June 5, 2008, 3:57 AM> > > > > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 We must be having sunspots (not that we ever see the sun in WA) or yahoo went bonkers. I Can't read joy's or scotts msgs. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: CaregiversDate: Thu, 05 Jun 2008 18:59:25 -0000 whre is this?Joy in Seattle> > Subject: Caregivers> To: Breathe-Support > Date: Thursday, June 5, 2008, 3:57 AM> > > > > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 We must be having sunspots (not that we ever see the sun in WA) or yahoo went bonkers. I Can't read joy's or scotts msgs. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: CaregiversDate: Thu, 05 Jun 2008 18:59:25 -0000 whre is this?Joy in Seattle> > Subject: Caregivers> To: Breathe-Support > Date: Thursday, June 5, 2008, 3:57 AM> > > > > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 I am speechless, Thank you all Caregivers for being so brave, it is not easy for you at all. God Bless You, Your task is difficult. Sometimes you are guessing what we are feeling and you come here for insight from other patients, you care for them without any compensation, you communicate for them, I commend you all !! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Caregivers> To: Breathe-Support@ yahoogroups. com> Date: Thursday, June 5, 2008, 3:57 AM> > > > > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 I am speechless, Thank you all Caregivers for being so brave, it is not easy for you at all. God Bless You, Your task is difficult. Sometimes you are guessing what we are feeling and you come here for insight from other patients, you care for them without any compensation, you communicate for them, I commend you all !! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Caregivers> To: Breathe-Support@ yahoogroups. com> Date: Thursday, June 5, 2008, 3:57 AM> > > > > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 If we were generally integrated, then would it stop one of us, or a caregiver, feeling as though they could vent without upsetting someone. I can vent on here to people who get it. I know that Rob will do anything for me, and I know he has his way of dealing with things. I also know that he doesn't tell me everything he feels incase he upsets me. He gets angry and wants to hit out at me being ill, but he wouldn't want me to think that he's angry at ME. I might want to vent at having to be a burden on him and that it agrivates me extremely that I can't do everything I want to for myself. I get angry that he has to help me. I get cross that he doesn't do things the way I want them to be done (OCD anyone!) But I'm not angry at HIM. It's not that I want to hide my feelings from him, nor does he from me, but this is a safe place where I can be as unreasonable as I like. There is a place for an itegrated forum, K for example needs our opinions and I'm sure I could probably help Rob more if I have other caregivers to talk to, but I feel there needs to be separate forums too. Love Ze xx P.S, K, I'm not saying you shouldn't be here, please don't think that xxx > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand... go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 If we were generally integrated, then would it stop one of us, or a caregiver, feeling as though they could vent without upsetting someone. I can vent on here to people who get it. I know that Rob will do anything for me, and I know he has his way of dealing with things. I also know that he doesn't tell me everything he feels incase he upsets me. He gets angry and wants to hit out at me being ill, but he wouldn't want me to think that he's angry at ME. I might want to vent at having to be a burden on him and that it agrivates me extremely that I can't do everything I want to for myself. I get angry that he has to help me. I get cross that he doesn't do things the way I want them to be done (OCD anyone!) But I'm not angry at HIM. It's not that I want to hide my feelings from him, nor does he from me, but this is a safe place where I can be as unreasonable as I like. There is a place for an itegrated forum, K for example needs our opinions and I'm sure I could probably help Rob more if I have other caregivers to talk to, but I feel there needs to be separate forums too. Love Ze xx P.S, K, I'm not saying you shouldn't be here, please don't think that xxx > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand... go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 If we were generally integrated, then would it stop one of us, or a caregiver, feeling as though they could vent without upsetting someone. I can vent on here to people who get it. I know that Rob will do anything for me, and I know he has his way of dealing with things. I also know that he doesn't tell me everything he feels incase he upsets me. He gets angry and wants to hit out at me being ill, but he wouldn't want me to think that he's angry at ME. I might want to vent at having to be a burden on him and that it agrivates me extremely that I can't do everything I want to for myself. I get angry that he has to help me. I get cross that he doesn't do things the way I want them to be done (OCD anyone!) But I'm not angry at HIM. It's not that I want to hide my feelings from him, nor does he from me, but this is a safe place where I can be as unreasonable as I like. There is a place for an itegrated forum, K for example needs our opinions and I'm sure I could probably help Rob more if I have other caregivers to talk to, but I feel there needs to be separate forums too. Love Ze xx P.S, K, I'm not saying you shouldn't be here, please don't think that xxx > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand... go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 ... honestly, I was not aware there are more men here then women. I guess it's because men don't post much. Those who do are always good to hear from. I surely do not want to be rude nor do I want to ignore you. I posted earlier that I am not going to write one more word about the conflict. It just keeps the flame flaming. So please excuse me not answering your question, "what's the problem?". I'm glad you post and especially the funnies. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! CaregiversTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 5, 2008, 3:57 AM This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand.. . go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 ... honestly, I was not aware there are more men here then women. I guess it's because men don't post much. Those who do are always good to hear from. I surely do not want to be rude nor do I want to ignore you. I posted earlier that I am not going to write one more word about the conflict. It just keeps the flame flaming. So please excuse me not answering your question, "what's the problem?". I'm glad you post and especially the funnies. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! CaregiversTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 5, 2008, 3:57 AM This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand.. . go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 ... honestly, I was not aware there are more men here then women. I guess it's because men don't post much. Those who do are always good to hear from. I surely do not want to be rude nor do I want to ignore you. I posted earlier that I am not going to write one more word about the conflict. It just keeps the flame flaming. So please excuse me not answering your question, "what's the problem?". I'm glad you post and especially the funnies. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! CaregiversTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 5, 2008, 3:57 AM This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand.. . go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
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