Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 In a message dated 11/7/1999 6:47:56 PM Pacific Standard Time, Lu1953@... writes: << << Lu will send in some pictures and we will be all set. >> you mean you haven't gotten those pics yet????? >> Oh, were those from you? Cool, thanks. Nice tattoo. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 In a message dated 11/8/1999 5:58:50 AM Pacific Standard Time, lotastuf@... writes: << I would recommend, rather than a newsletter, is to post a summary of weekly questions concerning RP and the answers. Just a thought. A newsletter takes a lot of time to plan, execute and disperse. >> Sounds like a plan Christy. And judging from the response to the idea I think everyone agrees. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 Roy, just to answer your question. The AI group does have a newsletter but it only goes out to the members of the group. This concerns more of the " inside workings " of the group than AI. We have an emergency fund and board to administer it and reports on this go out in the newsletter as well as birthdays, anniversaries, our library info and topics of interest that don't need to go into the public. I would recommend, rather than a newsletter, is to post a summary of weekly questions concerning RP and the answers. Just a thought. A newsletter takes a lot of time to plan, execute and disperse. Have a nice day everyone! Christy There is an angel inside of me whom I am constantly shocking. http://christyspage.tripod.com/index.html http://members.tripod.com/~autoimmune/ Autoimmune newsletter >From: Rlr1999@... > >Hey there all of you autoimmune group members. If there are any reading >this. > >I saw that the AI group has a newsletter. Is this true? What does it consist >of how often. How do they do it??? > >I found out that we can set up a site to act like a newsletter or an >announcement group. I would like us to consider a short newletter. All we >would need are some articles. The Polish Pauper can supply us with jokes, >Lu will send in some pictures and we will be all set. > >I was going to suggest that we have individuals supply info on topics they >are interested in. > >Such as when someone asked about the dental problems. If whoever asks the >question would like to summarize the replies and forward them to whoever >wants to handle the newsletter. We could have a variety of topics in no >time. > >We could also use it to get out general info which we feel is significant. > >One other thought I would like to put out right now. If this does get going >I think we should write the articles with the idea that they would be used in >public. >I would like the archives on the newsletter to be open to the public for >individuals researching RP. I want to emphsize that any info that would be >posted to the newsletter would not be of the personal nature. I dont want >anyone to think that anything that is said here would make its way to the >newsletter. >The newsletter should be just a general info about what is being discussed. >SUch as new drugs or chicken pox etc... > >The archives of this group are private and should be. I bet members of this >group know more about each other than some of our own spouses know about us. > >I know we had discussed the newsletter once before. Is there any interest in >it? > >Roy > >>hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 In a message dated 11/08/1999 1:45:58 PM Eastern Standard Time, kristinsnyder@... writes: << think it's totally wrong to prevent people from getting information. What's the point of having a list like this if you can't talk about anything and everything that could help, and you go so far as to remove people who actually got better, and wanted to lend a helping hand. >> and others. I will address this issue for the last time. NO ONE was upset about Jeff and joining the list. in fact his information was welcome. when he first joined he came off quite arrogant and cockey when Roy and Myself all said before anyone does anything please check it out and talk to your doctor first. Some people are totally desperate, I am one of them, and may go off and try something without their doctors knowledge and for some it may prove to be harmful. His initially claimed was cured, well I have had RP for 30 years and his choice of words was innacurate which he agreed to. His wife's doctor said she was in remission not cured. p[eople read words like she is cured and may throw caution to the wind and throw out their meds before thinking things through. If you or anyone has something good to offer, why would you intitially get arrogant over Roy and myself remind everyone just to be careful? had he came on and said she was in remission from the start, attitudes might have ben different. but to say a cure when even her doctors haven't said that was not in the best interest of the masses here. I ordered the book, I want to read about it. I was not against them. BUT his first couple of posts angered and hurt 9 people on this list, nine people that actually have RP some severe. those 9 people meant more to me and the list than one. He posted his web site address, and the doctors address for those interested. but you don't come on a list and act and say we enjoy our disease and having it, we enjoy taking our meds and don't want to get better. you don't come on a list and verbally attack and misquote what people are saying. you don't come on a list and try to manipulate words to suit your purpose. Had he had a different attitude when he first came on, had he been totally accurate with his wording he would have been welcome with open arms as would his wife. I will not have my words manipulated and made to sound different then what was written and he has done that with me and with . he also did it with a few other posts. Living the life with RP is stressful enough. This list was intended as a safe haven for support not as a stress producing series of posts. I pray stays in remission for the rest of her life. I honestly do. after reading her story from the their web site and talking to Jeff, she hjad a very mild flare up compared to most of us. Love and Gentle Hugs, Angie http://www.onelist.com/subscribe/SantaLetters http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 In a message dated 11/8/99 12:25:54 PM Central Standard Time, AngieCATW1@... writes: << Burdicks >> HAPPY BIRTHDAY SUSAN ! I hope you have a good one and many more to come. Love ya! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 In a message dated 11/8/99 12:31:27 PM Central Standard Time, AngieCATW1@... writes: << We don't weigh our words before we type them, we shoot from the hip, and the heart. RP was becomming like that until last week. What a shame what one incident can do to ruin a good thing >> well can we fix the problem? I certainly would miss all of you without the group.....you are all my daily fix.....LOL kind of like coffee is to some..... or sex lie to others LOL I love you all... Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 I joined just a few days ago, and had to dig through the archives to figure out what everyone was talking about with regards to Jeff and . My initial time here has been highly confusing. My mother was diagnosed with RP six months ago, and I would do *anything* to relieve her suffering. *Anything.* I love my mother, and it tears me apart to see her like this. I've got to say that I'm deeply disappointed that two people who seemed to offer some hope were removed from this list, and treated badly. I joined the " other " list, but haven't heard from anyone yet. I am desperate to learn about anything that will help my mother. I will move back in with my parents and cook for them myself if that would help. I think it's totally wrong to prevent people from getting information. What's the point of having a list like this if you can't talk about anything and everything that could help, and you go so far as to remove people who actually got better, and wanted to lend a helping hand. > We don't weigh our words before we type them, we > shoot from the hip, and the > heart. RP was becomming like that until last week. > What a shame what one > incident can do to ruin a good thing > > > Love and Gentle Hugs, > Angie > http://www.onelist.com/subscribe/SantaLetters > http://www.geocities.com/acenneno_1999 > http://rpolychondritis.tripod.com/index.html > http://members.tripod.com/~autoimmune > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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