Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 I hate to say it but when I feel good I just pretend it's not there even though I walk with a walker or use my wheelchair to get around. That's when I should be here just to give my support and tell my treatment story to newer people. When I am in need of support and to hear how others have done with a change of meds or symptons changing I know I can come here and get what I need. It's not been a good year for my 2 brothers who each have bad health problems. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: Support questionsTo: neurosarcoidosis Date: Friday, April 10, 2009, 1:51 PM , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Tracie All of you moderators are a godsend. I get more information, facts, and support from you than from anyone else. I give a big hats off to you and a wonderful cyber hug for being there. Keep up the great work---PLEASE-- you are appreciated so much. Jackie Support questions , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Jackie, I appreciate it-- and I enjoy being able to share what I've learned from this journey. It is alot of work-- and yet one of the most important goals that Darlene and I have is that this is YOUR group-- and we want you to let us know what we need to do to make it even better. Thanks, Tracie NS Co-owner/moderator Subject: Re: Support questionsTo: Neurosarcoidosis Date: Friday, April 10, 2009, 1:17 PM Tracie All of you moderators are a godsend. I get more information, facts, and support from you than from anyone else. I give a big hats off to you and a wonderful cyber hug for being there. Keep up the great work---PLEASE- - you are appreciated so much. Jackie Support questions , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 GOT ANY MONEY??? LMAO Jackie Support questions , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Tracie and Jackie, Just to let you know I am thankful for you both for being there. Greg aka Krumdawg > > > Subject: Re: Support questions > To: Neurosarcoidosis > Date: Friday, April 10, 2009, 1:17 PM > > > Tracie > All of you moderators are a godsend. I get more information, facts, and support from you than from anyone else. I give a big hats off to you and a wonderful cyber hug for being there. Keep up the great work---PLEASE- - > you are appreciated so much. > Jackie > Support questions > > > , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... > > > we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? > > Or so many of us are just so ill that we can't keep intouch. > what do you think? > > Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. > Blessings to all, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 LOL! Ya know, one thing about this group-- we don't fire moderators-- and the pay-- well, it makes social security look good! From: jackie <shadowme810@ verizon.net>Subject: Re: Support questionsTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, April 10, 2009, 1:17 PM Tracie All of you moderators are a godsend. I get more information, facts, and support from you than from anyone else. I give a big hats off to you and a wonderful cyber hug for being there. Keep up the great work---PLEASE- - you are appreciated so much. Jackie Support questions , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2009 Report Share Posted April 10, 2009 Thank you Greg. I am thankful for your presence too. You have a lot of gumption going on there. Jackie Support questions> > > , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ...> > > we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need??> > Or so many of us are just so ill that we can't keep intouch. > what do you think? > > Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together.> Blessings to all,> Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 How about do you have any power & influence over Medicare & the drug companies>? LOLJoin our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... From: jackie <shadowme810@ verizon.net>Subject: Re: Support questionsTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, April 10, 2009, 1:17 PM Tracie All of you moderators are a godsend. I get more information, facts, and support from you than from anyone else. I give a big hats off to you and a wonderful cyber hug for being there. Keep up the great work---PLEASE- - you are appreciated so much. Jackie Support questions , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 NO-- but we have the info that hellp substantiate why you need a certain med. Lots of Remicade testimonies, studies, etc-- and we do have some info on prescription drug assistance programs. Let us know. Tracie From: jackie <shadowme810@ verizon.net>Subject: Re: Support questionsTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, April 10, 2009, 1:17 PM Tracie All of you moderators are a godsend. I get more information, facts, and support from you than from anyone else. I give a big hats off to you and a wonderful cyber hug for being there. Keep up the great work---PLEASE- - you are appreciated so much. Jackie Support questions , thank you so much for this post. As you can tell, it's been hard for our wonderful moderators this year also-- and we too have dropped the ball on keeping in touch, as we are all in serious flares at this time. I truly appreciate these questions- and I hope that our members will take the time to share with us what it is that they need, or want from us as a group. So gang, ... we are what over 500 strong and there is only a handful of us who keep intouch. That makes me wonder if so many of us are that are part of this group do not find the support that they need?? Or so many of us are just so ill that we can't keep intouch. what do you think? Please give us your feedback so that we can be the support you need-- don't be shy, we're in this together. Blessings to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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