Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 that saddens me. I don't know how I would have gotten through the year before was transplanted if I wouldn't have been able to poise questions, concerns, vents etc.I will be sure to keep up with Ken on his Caringbridge site and only post my cheers for him there. in TexasBrother, , 32, UC & PSC, transplant 12-12-07 I received a complaint this week, a group member (there might be more than one, I guess) “doesn’t want to read about someone they don’t know” or “hear bad news about someone else’s transplant before they (the writer) isn’t even listed”. So….please stop posting updates to the group from our Caringbrige page. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 that saddens me. I don't know how I would have gotten through the year before was transplanted if I wouldn't have been able to poise questions, concerns, vents etc.I will be sure to keep up with Ken on his Caringbridge site and only post my cheers for him there. in TexasBrother, , 32, UC & PSC, transplant 12-12-07 I received a complaint this week, a group member (there might be more than one, I guess) “doesn’t want to read about someone they don’t know” or “hear bad news about someone else’s transplant before they (the writer) isn’t even listed”. So….please stop posting updates to the group from our Caringbrige page. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 >>>that saddens me Me too (and a few other feelings, I won’t reveal! ;-) I’ve always believed knowledge is power, besides that, it just seems easier for people to read it here. But like Ken told me (and I’ve often said myself) if you can’t handle reading bad news or know bad things can and do happen to people, then how are you going to handle your own transplant? Cause, honestly folks, it ain’t all glory and feeling your old self again, at least not for everyone. Since the complaint was only about my caringbridge page and directed to just me, I assumed the member just doesn’t like me, because I haven’t heard about anyone else getting complaints. So we’ll just stop posting my updates and I’m sure everything will be fine. Thanks, Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 >>>that saddens me Me too (and a few other feelings, I won’t reveal! ;-) I’ve always believed knowledge is power, besides that, it just seems easier for people to read it here. But like Ken told me (and I’ve often said myself) if you can’t handle reading bad news or know bad things can and do happen to people, then how are you going to handle your own transplant? Cause, honestly folks, it ain’t all glory and feeling your old self again, at least not for everyone. Since the complaint was only about my caringbridge page and directed to just me, I assumed the member just doesn’t like me, because I haven’t heard about anyone else getting complaints. So we’ll just stop posting my updates and I’m sure everything will be fine. Thanks, Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Don't let someone ruin your feelings about posting whatever you want about Ken. If people don't want to read then they don't have to ! It's important to be able to talk about things and what better place to do that ? I don't think it does anyone any good to be in denial about the possibility of complications- knowledge is power. Prayers are more powerful and if you need support and prayers you should get it !!! ((((hugs)))) Lori lucky mom blessed with triplets > > >>>that saddens me > > Me too (and a few other feelings, I won't reveal! ;-) I've always > believed knowledge is power, besides that, it just seems easier for > people to read it here. But like Ken told me (and I've often said > myself) if you can't handle reading bad news or know bad things can and > do happen to people, then how are you going to handle your own > transplant? Cause, honestly folks, it ain't all glory and feeling your > old self again, at least not for everyone. Since the complaint was > only about my caringbridge page and directed to just me, I assumed the > member just doesn't like me, because I haven't heard about anyone else > getting complaints. So we'll just stop posting my updates and I'm sure > everything will be fine. Thanks, > > Barb in Texas - Together in the Fight.... Whatever it Takes! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Is everyone else on board with this? Because this seems like a very bad decision to me. Aside from the fact that Barb is a very knowledgeable, long-time member of this support group who should be entitled to the same support as every other member, I would think the very specific point of this group is trading stories and questions and information - and shutting down any person's series of posts because hearing about the treatment of PSC is too depressing seems to subvert the whole point of this group in the first place. And to whoever doesn't want to hear about Ken's progress: while you are absolutely entitled to skip whatever posts you are not interested in reading or that you find too upsetting, you should know that there are amazing, inspirational aspects to Ken's story as well. For however sick he is right now Ken is fighting the fight - and he is winning. As Barb said in her last caringbridge update, they will take the coming problems one at a time - which is the best any of us can do - and Ken will no doubt do his part by fighting through the multiple crazy procedures and complications and whatever else PSC has to throw at him - just like he's been doing. It's easy to be overwhelmed by the challenges this disease presents and I totally understand just not being up for reading certain things sometimes, but just like there are great posts here about people that have gone decades without a symptom, there are also terrific posts about people like Ken, or , who fight these unbelievable battles and show us what we can do when/if it's our turn. I would encourage you to try to take more inspiration from these people you don't know, rather than try to shut down the sharing of information just because it might be difficult to hear. Best, Nina in Philly > I received a complaint this week, a group member (there might be more > than one, I guess) " doesn't want to read about someone they don't know " > or " hear bad news about someone else's transplant before they (the > writer) isn't even listed " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Is everyone else on board with this? Because this seems like a very bad decision to me. Aside from the fact that Barb is a very knowledgeable, long-time member of this support group who should be entitled to the same support as every other member, I would think the very specific point of this group is trading stories and questions and information - and shutting down any person's series of posts because hearing about the treatment of PSC is too depressing seems to subvert the whole point of this group in the first place. And to whoever doesn't want to hear about Ken's progress: while you are absolutely entitled to skip whatever posts you are not interested in reading or that you find too upsetting, you should know that there are amazing, inspirational aspects to Ken's story as well. For however sick he is right now Ken is fighting the fight - and he is winning. As Barb said in her last caringbridge update, they will take the coming problems one at a time - which is the best any of us can do - and Ken will no doubt do his part by fighting through the multiple crazy procedures and complications and whatever else PSC has to throw at him - just like he's been doing. It's easy to be overwhelmed by the challenges this disease presents and I totally understand just not being up for reading certain things sometimes, but just like there are great posts here about people that have gone decades without a symptom, there are also terrific posts about people like Ken, or , who fight these unbelievable battles and show us what we can do when/if it's our turn. I would encourage you to try to take more inspiration from these people you don't know, rather than try to shut down the sharing of information just because it might be difficult to hear. Best, Nina in Philly > I received a complaint this week, a group member (there might be more > than one, I guess) " doesn't want to read about someone they don't know " > or " hear bad news about someone else's transplant before they (the > writer) isn't even listed " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 --I am not on the transplant list and I am grateful for the posts. They are real and help me to see what I might be facing some day. I ask that you please keep making your posts and I thank you for them. Dawn - In , " Barb Henshaw " wrote: > > I received a complaint this week, a group member (there might be more > than one, I guess) " doesn't want to read about someone they don't know " > or " hear bad news about someone else's transplant before they (the > writer) isn't even listed " . > > So..please stop posting updates to the group from our Caringbrige page. > If anyone wants to find out the latest news or stay informed, please > visit his caringbridge page located here: > http://www.caringbridge.org/visit/ken Under the journal section, you > can sign up to receive journal update notification e-mails. > > Thank you, > Barb in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 --I am not on the transplant list and I am grateful for the posts. They are real and help me to see what I might be facing some day. I ask that you please keep making your posts and I thank you for them. Dawn - In , " Barb Henshaw " wrote: > > I received a complaint this week, a group member (there might be more > than one, I guess) " doesn't want to read about someone they don't know " > or " hear bad news about someone else's transplant before they (the > writer) isn't even listed " . > > So..please stop posting updates to the group from our Caringbrige page. > If anyone wants to find out the latest news or stay informed, please > visit his caringbridge page located here: > http://www.caringbridge.org/visit/ken Under the journal section, you > can sign up to receive journal update notification e-mails. > > Thank you, > Barb in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 --I am not on the transplant list and I am grateful for the posts. They are real and help me to see what I might be facing some day. I ask that you please keep making your posts and I thank you for them. Dawn - In , " Barb Henshaw " wrote: > > I received a complaint this week, a group member (there might be more > than one, I guess) " doesn't want to read about someone they don't know " > or " hear bad news about someone else's transplant before they (the > writer) isn't even listed " . > > So..please stop posting updates to the group from our Caringbrige page. > If anyone wants to find out the latest news or stay informed, please > visit his caringbridge page located here: > http://www.caringbridge.org/visit/ken Under the journal section, you > can sign up to receive journal update notification e-mails. > > Thank you, > Barb in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 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 Barb, et al. I want everyone to keep sharing their thoughts, experiences, prayers, etc. on this site. I believe it's core to the mission of this site: to educate others on PSC and share our experiences so none of feels alone in the fight. I know I'm not alone in saying this, so here goes: When I was diagnosed with PSC, I felt out of balance. I was so overwhelmed by the idea of PSC that I lost my bearing. I was truly lost, feeling cheated that I would miss out on the future with my family - my beautiful wife and children. I felt this way - until the moment I found this group. After I logged in, I saw that I am not alone. As sad as that is for the rest of you, it was incredibly uplifting for me. Not just that there are others with PSC, but that you are all are so loving, so caring, so generous with your time and kind words, so honest about your experiences - good and bad - that I felt...welcome. Welcome to talk about PSC - with others who know and can empathize. Welcome to lurk, listen, reply, vent, cry, and ask for help. In short, I found another *home* for the part of me I wish I didn't have but must learn to deal with. As for everyone else's issues - they are mine too. When you have an attack, it hurts me too. When you are scared about an ERCP, a stent placement, a transplant - I am scared with you. When someone passes, I feel that loss, because you are part of my PSC family. So no, I don't accept that we should limit what we say on this site. The good, the bad, the painful, the glorious - we should share it all. That's what family is for, right? Lastly - I don't write often. I wrote quite a bit in the beginning when I was diagnosed and then quickly had a resection. However, I read about all of you, everyday. You are as much a part of my daily life as my morning coffee and seeing my kids to the school bus. So please, whoever asked Barb not to post - please consider this site not as a burden or unpleasant reminder of PSC - consider it a testament to our better selves, of our ability to connect and share about PSC when many of us, if not all, have no other outlet. Thanks for listening (reading) and thanks...for being there. Severin ************** - Father of 4 (8,6.5,2.5, 9 mos.) - Happy Hubby (apparently, w/ 4 kids!) - PSC/UC 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Barb ... dear wonderful Barb, After my hubby read me tonight's messages, I had to drag myself into laptop mode and respond. I'm so spittin' mad that I'm about to cry. Others have already expressed their thoughts so very well and I stand in total agreement with the majority -- please don't say no to posting Ken's updates. The struggle which your family has waged has been, is, and will probably continue to be positively herculean in its depth and has been not only an inspiration, but also a tremendous comfort to so many of us. I've been a member of this group since about Dec. 2001 (shortly after I was officially diagnosed). This group has carried me from the shock and fear of that initial diagnosis, through all the many quirks and jolts which are part and parcel of this disease. This year, most particularly, I have identified with Ken because of developing all these blood clots in the portal vein system, just as Ken has done and he and you have kept my spirits up tremendously. I keep telling myself that if Ken can get through what he has, then I can make it through mine which (thus far) has been much less serious than his in the complications. Most particularly, I want to send you a big hug for the message you left on my own CarePage today about the esophageal bandings which I will undergo either tomorrow or the next day. I will definitely not hesitate to ask for pain meds and I will walk!!! Seems to me that it has been said (and not too many months ago) that if you can't take these messages, for heaven's sakes hit the delete button!!!! I am trying to tell myself that the person who wrote you must surely be quite new to the group and doesn't realize how VERY MUCH you have done on behalf of this group. Many thanks to the whole Henshaw family for the example they give us!!! Y'all have set the bar high for the rest of us and I think that's a very good thing indeed!! Hugs & Prayers with love, Carolyn B. in SC (from my hospital bed. Today I got a central port installed in my jugular vein. Ouch!! Must lie back. Getting dizzy now.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 I am have been a part of this group since 2000 over 8 years and there is little complaints now and again! But in my humble opinion this iz crazy! I have learned so much from barbs posts over the years and I am sure it is not always easy to post everything that happens good or bad but it is knowledge we all need to know whether we like it or not we all have Psc or are cargivers and she was only trying to give us knowledge to help! I for one barb are so very greatful for everything you do for this group! I know you do all of it for us to help us! I thank you from the bottom of my heart and hope you continue to give all of us the strenght and knowledge we need to keep up the fight against psc! I know I am a big time lurker but I could not help myself to reply to this! We need to fight together against psc not against each other! Cathy from Missouri Sent from my Verizon Wireless BlackBerryDate: Mon, 8 Sep 2008 15:14:20 -0500To: < >Subject: RE: Caringbridge Page >>>that saddens me Me too (and a few other feelings, I won’t reveal! ;-) I’ve always believed knowledge is power, besides that, it just seems easier for people to read it here. But like Ken told me (and I’ve often said myself) if you can’t handle reading bad news or know bad things can and do happen to people, then how are you going to handle your own transplant? Cause, honestly folks, it ain’t all glory and feeling your old self again, at least not for everyone. Since the complaint was only about my caringbridge page and directed to just me, I assumed the member just doesn’t like me, because I haven’t heard about anyone else getting complaints. So we’ll just stop posting my updates and I’m sure everything will be fine. Thanks, Barb 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 I for one rarely post in response to messages. I read the posts of you all every morning and evening. I've increased in my knowledge and understanding of how PSC progresses, and how families and friends get through this journey together. One of the main inspirations has for me has been BARB and KEN and their family! I'm not okay with anyone being told not to share just because they may be experiencing struggles or complications. That is when they need to share and need the support of this group the most. That is what a SUPPORT GROUP is all about.....Hello!?! That's when as a group we all learn from each other. If we only had posts that reflect the miracles of the blessed ones who have gone 12+ up to 20 years or more relatively bump free journeys with PSC ..... Then, we greatly misdirect people. That is not the journey for all. Our son Tyler is now 16. He was never ill or had any symptom that PSC was lurking and progressing in his liver. While stable for now(doctors way of saying the lion is sleeping) Tyler awoke one Thursday morning in early Oct. 2006 in extreme pain that progressed in a couple of days to high fever that wouldn't come down, severe sweats, chills, shakes and tremors, nausea, vomiting, diarrea ....the works of a Cholangitis attack. He'd never done this before. He wound up with an 11 day hospital stay, more blood work daily than a vampire should require for their diet, 2 wide spectrum antibiotics by IV, a PICC line, 3 times he was put to sleep for tests and procedures trying to find what was wrong. He couldn't keep anything down not even a sip of water. He couldn't walk to the bathroom without assistance. It was an extremely scary time. He had a bone marrow aspiration and then finally a liver biopsy. Talk about 2 very upset, worried, flat out scared parents, brother, grandparents....everyone who knows our fun and crazy Tyler. During the month after his diagnosis, I would have been lost without the posts to read here. Tyler was diagnosed at Stage 3 with is biopsy at age 14. The good the bad and the ugly of all posts have helped me learn and deal with what this means. It all gave a big picture of what to expect. Tyler lost 35 pounds during this initial episode of what a life with PSC could be like. It took him 6 months to get any normalcy back to strength for a day to day life of a teenager. Almost 2 years later, Tyler has good days and bad days. He has been homeschooled for 8 years. Thankfully, this means a good day is a school day and fun day. A bad day ....it's okay to rest if you feel bad. He's back to school this year and back to his dog sitting job for our friend. The journey continues but now after belonging to this group we are prepared for what to watch for, how to better prepare for each step along the way. I'm thankful for the wide basis of posts. I'm encouraged by those who share what has worked for them. I am also better prepared for the next cholangitis attack or path of this journey after having read your posts Barb. You are an amazing woman and mother! You inspire me. Post what ever you like. If someone doesn't want to read it they can scroll on down to the next post. My prayers are with you and your family daily. Cindy mom to Tyler age 16, PSC dx Oct 2006.Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 I for one rarely post in response to messages. I read the posts of you all every morning and evening. I've increased in my knowledge and understanding of how PSC progresses, and how families and friends get through this journey together. One of the main inspirations has for me has been BARB and KEN and their family! I'm not okay with anyone being told not to share just because they may be experiencing struggles or complications. That is when they need to share and need the support of this group the most. That is what a SUPPORT GROUP is all about.....Hello!?! That's when as a group we all learn from each other. If we only had posts that reflect the miracles of the blessed ones who have gone 12+ up to 20 years or more relatively bump free journeys with PSC ..... Then, we greatly misdirect people. That is not the journey for all. Our son Tyler is now 16. He was never ill or had any symptom that PSC was lurking and progressing in his liver. While stable for now(doctors way of saying the lion is sleeping) Tyler awoke one Thursday morning in early Oct. 2006 in extreme pain that progressed in a couple of days to high fever that wouldn't come down, severe sweats, chills, shakes and tremors, nausea, vomiting, diarrea ....the works of a Cholangitis attack. He'd never done this before. He wound up with an 11 day hospital stay, more blood work daily than a vampire should require for their diet, 2 wide spectrum antibiotics by IV, a PICC line, 3 times he was put to sleep for tests and procedures trying to find what was wrong. He couldn't keep anything down not even a sip of water. He couldn't walk to the bathroom without assistance. It was an extremely scary time. He had a bone marrow aspiration and then finally a liver biopsy. Talk about 2 very upset, worried, flat out scared parents, brother, grandparents....everyone who knows our fun and crazy Tyler. During the month after his diagnosis, I would have been lost without the posts to read here. Tyler was diagnosed at Stage 3 with is biopsy at age 14. The good the bad and the ugly of all posts have helped me learn and deal with what this means. It all gave a big picture of what to expect. Tyler lost 35 pounds during this initial episode of what a life with PSC could be like. It took him 6 months to get any normalcy back to strength for a day to day life of a teenager. Almost 2 years later, Tyler has good days and bad days. He has been homeschooled for 8 years. Thankfully, this means a good day is a school day and fun day. A bad day ....it's okay to rest if you feel bad. He's back to school this year and back to his dog sitting job for our friend. The journey continues but now after belonging to this group we are prepared for what to watch for, how to better prepare for each step along the way. I'm thankful for the wide basis of posts. I'm encouraged by those who share what has worked for them. I am also better prepared for the next cholangitis attack or path of this journey after having read your posts Barb. You are an amazing woman and mother! You inspire me. Post what ever you like. If someone doesn't want to read it they can scroll on down to the next post. My prayers are with you and your family daily. Cindy mom to Tyler age 16, PSC dx Oct 2006.Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 I for one rarely post in response to messages. I read the posts of you all every morning and evening. I've increased in my knowledge and understanding of how PSC progresses, and how families and friends get through this journey together. One of the main inspirations has for me has been BARB and KEN and their family! I'm not okay with anyone being told not to share just because they may be experiencing struggles or complications. That is when they need to share and need the support of this group the most. That is what a SUPPORT GROUP is all about.....Hello!?! That's when as a group we all learn from each other. If we only had posts that reflect the miracles of the blessed ones who have gone 12+ up to 20 years or more relatively bump free journeys with PSC ..... Then, we greatly misdirect people. That is not the journey for all. Our son Tyler is now 16. He was never ill or had any symptom that PSC was lurking and progressing in his liver. While stable for now(doctors way of saying the lion is sleeping) Tyler awoke one Thursday morning in early Oct. 2006 in extreme pain that progressed in a couple of days to high fever that wouldn't come down, severe sweats, chills, shakes and tremors, nausea, vomiting, diarrea ....the works of a Cholangitis attack. He'd never done this before. He wound up with an 11 day hospital stay, more blood work daily than a vampire should require for their diet, 2 wide spectrum antibiotics by IV, a PICC line, 3 times he was put to sleep for tests and procedures trying to find what was wrong. He couldn't keep anything down not even a sip of water. He couldn't walk to the bathroom without assistance. It was an extremely scary time. He had a bone marrow aspiration and then finally a liver biopsy. Talk about 2 very upset, worried, flat out scared parents, brother, grandparents....everyone who knows our fun and crazy Tyler. During the month after his diagnosis, I would have been lost without the posts to read here. Tyler was diagnosed at Stage 3 with is biopsy at age 14. The good the bad and the ugly of all posts have helped me learn and deal with what this means. It all gave a big picture of what to expect. Tyler lost 35 pounds during this initial episode of what a life with PSC could be like. It took him 6 months to get any normalcy back to strength for a day to day life of a teenager. Almost 2 years later, Tyler has good days and bad days. He has been homeschooled for 8 years. Thankfully, this means a good day is a school day and fun day. A bad day ....it's okay to rest if you feel bad. He's back to school this year and back to his dog sitting job for our friend. The journey continues but now after belonging to this group we are prepared for what to watch for, how to better prepare for each step along the way. I'm thankful for the wide basis of posts. I'm encouraged by those who share what has worked for them. I am also better prepared for the next cholangitis attack or path of this journey after having read your posts Barb. You are an amazing woman and mother! You inspire me. Post what ever you like. If someone doesn't want to read it they can scroll on down to the next post. My prayers are with you and your family daily. Cindy mom to Tyler age 16, PSC dx Oct 2006.Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 You go Ken! You are an inspiration in the way you have carried on through everything! What a blessing to have a son like you! Your parents are blessed and I know very proud of you! Cindy mom to Tyler age 16 dx PSC stage 3 Oct 2006Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 You go Ken! You are an inspiration in the way you have carried on through everything! What a blessing to have a son like you! Your parents are blessed and I know very proud of you! Cindy mom to Tyler age 16 dx PSC stage 3 Oct 2006Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 This is part of what our group is about, not only sharing information, fears, anxieties, hopes, but reality and keeping up what is happening with our members. Those emails are clearly marked in the subject line and the delete key is at the fingertips. Next, someone isn't going to want to hear about me whining about my problems because they don't know me, but sorry, I am stubborn and bull-headed and this is a BIG avenue of EMOTIONAL support and COMFORT for me. I don't know anybody on this site, just what I read about, but I feel like I know most of the regulars. I don't always respond to a post because the subject contact is 'over my head' or at a farther point than I am in my disease process, and I have a rule about getting too far ahead of the process for fear of getting totally overwhelmed.....but I read and I pray. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
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