Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 nlr_psc wrote: > Is everyone else on board with this? I don't think so, but in this case the decision is up to Barb. As a moderator of this group I'm happy to have the updates about Ken posted here, but those updates belong to her and she has the right to ask us not to post them here. So if she asks us not to post the updates from caringbridge here, then please don't, but if she says it's ok, then it's ok with me too. I totally agree that we shouldn't limit anyone from posting what they're going through, and I'd personally encourage Barb to consider letting the updates be posted here. If someone is bothered by them, they can skip them. But bottom line is that at this point Barb has asked us not to post them here, and unless she changes her mind about that we need to respect it even if we disagree. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 nlr_psc wrote: > Is everyone else on board with this? I don't think so, but in this case the decision is up to Barb. As a moderator of this group I'm happy to have the updates about Ken posted here, but those updates belong to her and she has the right to ask us not to post them here. So if she asks us not to post the updates from caringbridge here, then please don't, but if she says it's ok, then it's ok with me too. I totally agree that we shouldn't limit anyone from posting what they're going through, and I'd personally encourage Barb to consider letting the updates be posted here. If someone is bothered by them, they can skip them. But bottom line is that at this point Barb has asked us not to post them here, and unless she changes her mind about that we need to respect it even if we disagree. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 nlr_psc wrote: > Is everyone else on board with this? I don't think so, but in this case the decision is up to Barb. As a moderator of this group I'm happy to have the updates about Ken posted here, but those updates belong to her and she has the right to ask us not to post them here. So if she asks us not to post the updates from caringbridge here, then please don't, but if she says it's ok, then it's ok with me too. I totally agree that we shouldn't limit anyone from posting what they're going through, and I'd personally encourage Barb to consider letting the updates be posted here. If someone is bothered by them, they can skip them. But bottom line is that at this point Barb has asked us not to post them here, and unless she changes her mind about that we need to respect it even if we disagree. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Barb, I can't believe that anyone would do this, we are all here to share our stories and help each other through, you have my support and we care so much about you, Ken and your entire family! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Barb, I can't believe that anyone would do this, we are all here to share our stories and help each other through, you have my support and we care so much about you, Ken and your entire family! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Barb, I can't believe that anyone would do this, we are all here to share our stories and help each other through, you have my support and we care so much about you, Ken and your entire family! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Please Barb, continue writing. I look for your emails daily. I respect and count on your knowledge and WANT to hear about Ken. I send him positive vibes daily, and I want to know how he is doing. And if the members of this group cannot write about their bad days as well as their good days, then this is no longer a support group. The power of this group is the virtual friendships and caring it creates. Don’t let anyone stop you from sharing what is so close to our heart. I can not believe what I am reading.. For me I am so thankful for all the messages of support, strength, and prayers from everybody. Without those I would not be here today. To all that leave me comments of encouragement I am truly blessed to here from ya. And for someone who has to cause such a problem they are on the wrong support page. I have gone through so much that is should sound like HOPE that I am giving. I am a fighter and you must be one to survive a transplant and everything that goes with it. We my Mother and I are here for you guys for support and information about PSC and what goes with it.. People have question about hernias, blood clots, rejection, and many more things that can happen. I have been through everything and all they have to do is ask and we will try and comfort and give some advise on what can help and meds. that work. Anyway I am done getting this off my chest. Mom I love you very much and don't let one or two people stop you from doing your job, which is to inform people about PSC and Organ Donation !!! Thanks again all for all you love and prayers... Ken Henshaw ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Please Barb, continue writing. I look for your emails daily. I respect and count on your knowledge and WANT to hear about Ken. I send him positive vibes daily, and I want to know how he is doing. And if the members of this group cannot write about their bad days as well as their good days, then this is no longer a support group. The power of this group is the virtual friendships and caring it creates. Don’t let anyone stop you from sharing what is so close to our heart. I can not believe what I am reading.. For me I am so thankful for all the messages of support, strength, and prayers from everybody. Without those I would not be here today. To all that leave me comments of encouragement I am truly blessed to here from ya. And for someone who has to cause such a problem they are on the wrong support page. I have gone through so much that is should sound like HOPE that I am giving. I am a fighter and you must be one to survive a transplant and everything that goes with it. We my Mother and I are here for you guys for support and information about PSC and what goes with it.. People have question about hernias, blood clots, rejection, and many more things that can happen. I have been through everything and all they have to do is ask and we will try and comfort and give some advise on what can help and meds. that work. Anyway I am done getting this off my chest. Mom I love you very much and don't let one or two people stop you from doing your job, which is to inform people about PSC and Organ Donation !!! Thanks again all for all you love and prayers... Ken Henshaw ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Please Barb, continue writing. I look for your emails daily. I respect and count on your knowledge and WANT to hear about Ken. I send him positive vibes daily, and I want to know how he is doing. And if the members of this group cannot write about their bad days as well as their good days, then this is no longer a support group. The power of this group is the virtual friendships and caring it creates. Don’t let anyone stop you from sharing what is so close to our heart. I can not believe what I am reading.. For me I am so thankful for all the messages of support, strength, and prayers from everybody. Without those I would not be here today. To all that leave me comments of encouragement I am truly blessed to here from ya. And for someone who has to cause such a problem they are on the wrong support page. I have gone through so much that is should sound like HOPE that I am giving. I am a fighter and you must be one to survive a transplant and everything that goes with it. We my Mother and I are here for you guys for support and information about PSC and what goes with it.. People have question about hernias, blood clots, rejection, and many more things that can happen. I have been through everything and all they have to do is ask and we will try and comfort and give some advise on what can help and meds. that work. Anyway I am done getting this off my chest. Mom I love you very much and don't let one or two people stop you from doing your job, which is to inform people about PSC and Organ Donation !!! Thanks again all for all you love and prayers... Ken Henshaw ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Ken, Thank you for your beautifully written post. Continue your fight, knowing that we are all keeping up with your journey and we are all supporting you. Barb, please do not stop sending us your updates. I hope that you realize how much you do for all of us in this group, so please listen to Ken and all the PSCers and caregivers who have written back to you!!! Remember, we are all together in the fight, no matter what it takes. Hugs, Ricky PSC 2003 Re: Caringbridge Page I can not believe what I am reading.. For me I am so thankful for all the messages of support, strength, and prayers from everybody. Without those I would not be here today. Mom I love you very much and don't let one or two people stop you from doing your job, which is to inform people about PSC and Organ Donation !!! Thanks again all for all you love and prayers... Ken Henshaw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Ken, Thank you for your beautifully written post. Continue your fight, knowing that we are all keeping up with your journey and we are all supporting you. Barb, please do not stop sending us your updates. I hope that you realize how much you do for all of us in this group, so please listen to Ken and all the PSCers and caregivers who have written back to you!!! Remember, we are all together in the fight, no matter what it takes. Hugs, Ricky PSC 2003 Re: Caringbridge Page I can not believe what I am reading.. For me I am so thankful for all the messages of support, strength, and prayers from everybody. Without those I would not be here today. Mom I love you very much and don't let one or two people stop you from doing your job, which is to inform people about PSC and Organ Donation !!! Thanks again all for all you love and prayers... Ken Henshaw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Ken, Thank you for your beautifully written post. Continue your fight, knowing that we are all keeping up with your journey and we are all supporting you. Barb, please do not stop sending us your updates. I hope that you realize how much you do for all of us in this group, so please listen to Ken and all the PSCers and caregivers who have written back to you!!! Remember, we are all together in the fight, no matter what it takes. Hugs, Ricky PSC 2003 Re: Caringbridge Page I can not believe what I am reading.. For me I am so thankful for all the messages of support, strength, and prayers from everybody. Without those I would not be here today. Mom I love you very much and don't let one or two people stop you from doing your job, which is to inform people about PSC and Organ Donation !!! Thanks again all for all you love and prayers... Ken Henshaw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Wow y’all worked your fingers to the bone, while I was playing catch up with the laundry! ;-0 Ian, Ken & I spoke today and decided in the future, we will or won’t post updates to this group ourselves. That way we won’t bother anyone with day to day dribble, but we will post here if news is worthy. Nina, girl friend, boy can you write! Severin, loved the “Happy Hubby (apparently, w/ 4 kids!) apparently, that’s funny, thanks for the laugh! To everyone else, thank you bunches for your support of our Caringbridge page, it means a lot to Ken & I. Several of our family members are in awe of you! They ask “do you know all those people who sign the guestbook?” and we have to tell them – nope, we’ve never met, but yeah their family too. Still hoping to meet everyone in Chicago. To the woman who wrote, I hope you aren’t as upset as you were. I’m sure others share your view, but I hope you were really more upset at PSC than you were at me. If you write me again, I’ll forward your email to athan, hopefully he’ll be able to help you. Now…..please put this issue to bed and let’s get back to work. We have an ugly disease to beat the crap out of! Barb & Ken in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Wow y’all worked your fingers to the bone, while I was playing catch up with the laundry! ;-0 Ian, Ken & I spoke today and decided in the future, we will or won’t post updates to this group ourselves. That way we won’t bother anyone with day to day dribble, but we will post here if news is worthy. Nina, girl friend, boy can you write! Severin, loved the “Happy Hubby (apparently, w/ 4 kids!) apparently, that’s funny, thanks for the laugh! To everyone else, thank you bunches for your support of our Caringbridge page, it means a lot to Ken & I. Several of our family members are in awe of you! They ask “do you know all those people who sign the guestbook?” and we have to tell them – nope, we’ve never met, but yeah their family too. Still hoping to meet everyone in Chicago. To the woman who wrote, I hope you aren’t as upset as you were. I’m sure others share your view, but I hope you were really more upset at PSC than you were at me. If you write me again, I’ll forward your email to athan, hopefully he’ll be able to help you. Now…..please put this issue to bed and let’s get back to work. We have an ugly disease to beat the crap out of! Barb & Ken in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Wow y’all worked your fingers to the bone, while I was playing catch up with the laundry! ;-0 Ian, Ken & I spoke today and decided in the future, we will or won’t post updates to this group ourselves. That way we won’t bother anyone with day to day dribble, but we will post here if news is worthy. Nina, girl friend, boy can you write! Severin, loved the “Happy Hubby (apparently, w/ 4 kids!) apparently, that’s funny, thanks for the laugh! To everyone else, thank you bunches for your support of our Caringbridge page, it means a lot to Ken & I. Several of our family members are in awe of you! They ask “do you know all those people who sign the guestbook?” and we have to tell them – nope, we’ve never met, but yeah their family too. Still hoping to meet everyone in Chicago. To the woman who wrote, I hope you aren’t as upset as you were. I’m sure others share your view, but I hope you were really more upset at PSC than you were at me. If you write me again, I’ll forward your email to athan, hopefully he’ll be able to help you. Now…..please put this issue to bed and let’s get back to work. We have an ugly disease to beat the crap out of! Barb & Ken in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Well said Barb.......we are together in the fight! Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
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