Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Gena, I agree with you whole heartedly, this list is what keeps me going on the really bad days. Especially when I am home alone. No one who has never suffered with this type of disease could really understand our feelings. I try not to post any more than I absolutely have to because of the attitude of some of them, therefor I feel that it is OK to post this letter of agreement with you, to the whole list. The days that your hands hurt so much you can't type, it is much easier to send one post that they will all read than it is to send individual posts. I believe that is the purpose of the group any way. Good luck to you, Skippy Skip RA 12 1/2 yrs. AP about 20 mos. Denny OA 3 yrs. AP about 1 yr. rheumatic chatting Dear Group, I've noticed some compaints recently from some who feel that this support list is to "chatty". I would like these folks to be more specific. I try my best to make my posts about a question having to do with my illness and the AP but know I can be long winded in trying to get there. I would hope some of these people who are bothered might be able to just glimpse at their subject lines and delete if it doesn't sound informative to them-or scan the first line of the messages and delete from there if it seems to chatty. I have to mention here something that someone else did on the list: there are some of us on the list with these D-- diseases who have no or very little support , concern or help from friends or family members. The list becomes all or much of our support. This has been the case for me and it has been a life saver. I, myself, have found no other support list that I have felt comfortable on or liked like this one because it is both very informative about treatment and disease help, but also very supportive and friendly. So, please have some patience out there. Sincerely, Gena Castanon (fibromyalgia 11 years-AP since one month ago-herxing HARD) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Actually, I started this current dissent about chatting, because of the flood of recipes which started coming over the lines. Those of us involved in that discourse agreed that we would clearly label recipes as such in the subject line, and I will be happy to filter them off to a separate folder which I can deal with independently of the AP information, which is my own main interest here. The only problem with this is if there is anyone else who feels overwhelmed by the recipes. No one else spoke up at that time, so I assume everyone else is cool with this. I knew that some of the newer members may not be aware that there is a separate chat list available to the group, where the discourse is social, and might be a better arena for some of the discussions. You might actually want to try it out if you feel you need more social support. I know I have a small group I correspond with for more personal support. , is it just me, or are the archives more difficult to deal with now that the list is being hosted by eGroups instead of OneList? I am not having much luck searching the archives now. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Hello, Group, Will jump in here as I am one of the main ones sending out the recipes. I have received MUCH mail to me, thanking me for sending the recipes out. In a nutshell, their comments has been that it is difficult trying to learn HOW to live with the new recommended diets, that it is a new world for them trying to discover just WHAT to do with other flour besides wheat, etc. etc. Some of these emails have come from the lurkers who do not write on the net but instead gleam information from all of us on there who do actively participate. As I said, had a received ONE single negative, I would have quit but I am there, hopefully, to give something to someone else as each of you has given to me essentially the basics of hope and how to navigate toward a newer, disease free life. As I promised these emailers, I still have several to post but will try to get to that this weekend. Will make sure I label them RECIPE for everyone's benefit. As an aside, I am not able to get into chat but each time I succeeded, which, granted has not been many, I am been the sole person in the room. I think general consensus is that this site works well for each and all and we need to all just get along. We do not want to lose one single individual due to bickering. Love, Probert wrote: > Actually, I started this current dissent about chatting, because of the > flood of recipes which started coming over the lines. Those of us involved > in that discourse agreed that we would clearly label recipes as such in the > subject line, and I will be happy to filter them off to a separate folder > which I can deal with independently of the AP information, which is my own > main interest here. > > The only problem with this is if there is anyone else who feels overwhelmed > by the recipes. No one else spoke up at that time, so I assume everyone else > is cool with this. > > I knew that some of the newer members may not be aware that there is a > separate chat list available to the group, where the discourse is social, > and might be a better arena for some of the discussions. You might actually > want to try it out if you feel you need more social support. I know I have a > small group I correspond with for more personal support. > > , is it just me, or are the archives more difficult to deal with now > that the list is being hosted by eGroups instead of OneList? I am not having > much luck searching the archives now. > > Jean > > ------------------------------------------------------------------------ > Free E-Cards, Screensavers, and Digital Pictures! > Corbis.com: > 1/3358/0/_/532797/_/955685215/ > ------------------------------------------------------------------------ Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 on 4/14/00 9:31 AM, Fain at slfain@... wrote: > I am not able to get into chat but each > time I succeeded, which, granted has not been many, I am been the sole person > in > the room. I think general consensus is that this site works well for each and > all and we need to all just get along. We do not want to lose one single > individual due to bickering. Love, , It is not the live chat and I are talking about, but another list like this one that you can sign up for. It is just intended to be more conversational and personal. It's called APchat. Here's its description: " Personal support, jokes and visiting for the people using antibiotics to treat the rheumatic diseases " You can sign up for it here: <APchat> There is also a place at both lists' sites where you can post files which the whole group can access. Someone suggested you post the recipes there, so they would be archived for future use by anyone who might want to access them-say someone who signed up later this year. As long as the recipes are labeled, I have not having any trouble handling them now. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2000 Report Share Posted June 15, 2000 Don't give up!! :-) I was there last night but didn't get in until late and everyone was gone. :-( Set a day (evening?) and time and I'll be there. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2000 Report Share Posted June 15, 2000 Is the chat time Est or Pst I went there est time 7:30 and saw no one: (( Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2000 Report Share Posted June 15, 2000 The time was EST. I will always try to list things in this time zone because I know most of you live in the E time zone. Of course this means I have to count backwards to remember to be there on time. =) Louise, I'm not sure why you saw no one in there. Did you get the screens to come up with real words, or did they all say something like " loading... " . I had problems getting into the chat yesterday as well. I ended up resetting my computer. I guess egroups chat is notorious for problems. =) Try again next time. Maybe things will work better for you. Robynn [ ] Re: Chatting > Is the chat time Est or Pst I went there est time 7:30 and saw no one: > (( > Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Where is everyone????? It is 9:10 PM CST - I will hang around until 9:30 PM CST and hope someone will join me!!!! Marci Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.