Scleroderma Information » Scleroderma » To Tiara or Miriam it is right
Question:
- Hide quoted text — Show quoted text ->>And just how do you know what Sherry has >on her web site and in her digest> >Do >>you realize that many people who don’t post >directly here, e-mail around to >us? >Actually she is right on this one. I do have a Wound care page. I had forgot >about it. Thank you Miriam (oops I mean Tiara). I created this page almost 2 >years ago when I first started my website. I had forgot all about it till I >read her page. >Now you know my site is getting huge when I can’t remember myself what is on >it. Or could that be brain fog? LOL >Sherry Messick >Visit my Surviving Scleroderma >http://www.SclerodermaSupport.com >The Scleroderma & Autoimmune Digest Email Support List >http://www.SclerodermaSupport.com/list.htm >"We are all Beacons of Light for each other" >Oprah Winfrey >Subject: Re: To Tiara or Miriam it is right >Path: >lobby03.news.aol.com!newstf02.news.aol.com!audrey03.news.aol.com!not-for-m ail >From: surviv…@aol.com (SurviveSD) >Newsgroups: alt.support.scleroderma >Lines: 23 >NNTP-Posting-Host: ladder02.news.aol.com >X-Admin: n…@aol.com >Date: 30 Sep 1998 05:39:54 GMT >Organization: AOL http://www.aol.com >References: <19980930013018.24477.00003…@ng150.aol.com> >Message-ID: <19980930013954.22840.00003…@ng154.aol.com>
Sherry, You owe no one an apology……..no one . Got it. You are helping so many even though one may not agree with you. Do not apologise for your repeats. This not a private area with only a handful of us. Why, I see people hanging around and absorbing the discussions. If you, Amie, Ronnie, and others don’t repeat, then this would not be a helpful site. I do believe Ed Harris posts his FAQ every month or so for the new patients that visit. I’m taking your apology and tossing it. You are to be applauded along with us all. Yes, we get cranky and that is normal….but I have learned so much and questions I have not thought to ask my Rheum. Wendy
Response:
I understand from others that you are posting directly to me in the newsgroup. I just thought I should let you know that I have you filtered out and your messages are instantly deleted once my newsreader recognizes it as coming from you. I never see your posts unless someone else quotes sections of it in their reply or brings them to my attention through email. So if I were you I wouldn’t waste my breath writing to me. I am not interested in anything you have to say after what you have done here to this newsgroup. If you wish to take my earlier message of friendship and act on it than that is a different story. Otherwise I am not wasting my time listening to your jibberish of negative and rude comments. You are the one being rude and negative here. Anyone else that has been rude to you was doing so in reply to your comments. So if you would stop that attitude than it all would stop. So the ball is in your court. What will you do? My bet is on posting another hateful reply. I bet I could win the lottery on that bet. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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>And just how do you know what Sherry has >on her web site and in her digest> Do >you realize that many people who don’t post >directly here, e-mail around to
us? Actually she is right on this one. I do have a Wound care page. I had forgot about it. Thank you Miriam (oops I mean Tiara). I created this page almost 2 years ago when I first started my website. I had forgot all about it till I read her page. Now you know my site is getting huge when I can’t remember myself what is on it. Or could that be brain fog? LOL Sherry Messick Visit my Surviving Scleroderma http://www.SclerodermaSupport.com The Scleroderma & Autoimmune Digest Email Support List http://www.SclerodermaSupport.com/list.htm "We are all Beacons of Light for each other" Oprah Winfrey
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> You owe no one an apology……..no one . Got it. You are helping so many > even though one may not agree with you. Do not apologise for your repeats. > This not a private area with only a handful of us. Why, I see people > hanging > around and absorbing the discussions. If you, Amie, Ronnie, and others > don’t > repeat, then this would not be a helpful site. > I do believe Ed Harris posts his FAQ every month or so for the new patients > that visit. > I’m taking your apology and tossing it. You are to be applauded along with > us > all. Yes, we get cranky and that is normal….but I have learned so much and > questions I have not thought to ask my Rheum.
Oh I didn’t mean anything I said as an apology. I have no reason to apologize to her and I don’t. I tried to reason with her in the beginning but that is obviously out of the question. As for the wound care issue, I simply had forgot about that page. I have over 300 pages on my website so forgeting one or two I think is acceptable. Especially when you have been through what I have recently. Yes I make a point to repeat certain items and articles because newbies drift in and they would benefit from reading it. Those of us that have read it before will only perhaps gain a new or even better perspective by reading it again. New people are getting online every day that is evident by the email I receive. They deserve to read many of the informative items that so many of us share. I keep an archive so every now and again I go through it and resend articles or information that I think new members would like to read. Especially if I notice several newbies posted. Love ya Wendy. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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Sherry, Whatever is going on the area may be two years old but the info on a patch that can be designed with your own blood byproducts has been very useful for diabetics. Since you are post surgery I am sure without realizing it that while in bed you are applying pressure on your elbows to sit up. This, if the skin is tight will cause them to tear open. Be aware of how you reach a sitting position.
Response:
> Since you are post surgery I am sure without realizing it that > while in bed you are applying pressure on your elbows to sit up. This, if > the > skin is tight will cause them to tear open. Be aware of how you reach a > sitting position.
Thank you for the tips. That is true that if I put weight on my elbow they do split open. I try not to. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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x-no-archives: yes> – Hide quoted text — Show quoted text ->Sherry if you would kindly copy and paste anything that I have written that >is >"hateful" I would be happy to appologize. I don’t know what you have been >told >but all I have stated in this area are my opinions. If they are not agreed >with I have no trouble with that. I do have a problem with the rudeness. >. >I am looking to read posts from some new patients and interested in the >experiences of the hundreds of other patients. This area is frequented by >the >same handful with the same questions and the same answers over and over >again. >It is not a private e-mail area. You personally have asked questions that >you >have answers to posted in your website. To illustrate this. You asked about >an elbow ulceration. in your website you have a tremendous area devoted to >wound care which even gives the names and addresses of wound care centers. > In NY on Oct. 18th. It is now public and I feel historical that both >doctors Harry Spiera and Dr. Thomas A. Medsger jr. will appear at an >educational meeting together. To me these two doctors represent our only >hope >of there ever being a cure found in our life time.. You know as well as I do >that they are the mentors to every other well known rheumatologist. The >RSVPs >that were called in already show a standing room only crowd. This seminar >exploded within a day of the first invitation being received. These two >doctors have remained humble and have never called attention to their >achievements. I again will repeat. I will continue to state my opinions and >do not intend to leave this news group. So please filter me out since we >don’t >agree on the format here and I am not going to waste my knowledge arguing >with >you or the other handful of rude patients.. >Regards Tamara
Tiara, What do you do? Clean these kind Doctors offices? You certainly love to throw those names around. Are you retrieving old disposed of paper from the trash cans? Quite honestly, who cares of your bits and pieces of information which is not productive, but very wordy and long. And just how do you know what Sherry has on her web site and in her digest> Do you realize that many people who don’t post directly here, e-mail around to us? And , I read your posts for a good laugh, not for your knowledge.
Response:
Sherry, I am still waiting for you to copy the posts you find "hateful" I would like to see them. Maybe I am missing something along the line. All I see at this point is that things have reached a level where since the attacks on me continued no one new is posting. I do feel this area should be closed. I am sincerely sorry but that is my honest opinion. I maintain that it is a danger. Far too much medical information has been printed. I just caught something I wrote about d-penn and forgot to qualify it with a statement that this was only from my own experience. It is too easy to make serious errors in the name of "support". This area is not a fun time site. It is taken very seriously by many who do not post. This needs to be addressed. Due to this and the lack of medical moderation it should be eliminated. If there was a way to do it I would go through the proper channels. However I think the rude exchanges that have been demonstrated here this week have done the job. Look around. If I were wrong I would not have received the amount of responses that I have. This to me serves to validate my opinions and shows that the desire here was to halt my comments. I know that I am right about how much of a danger medical info is with the absence of a true medical moderator. What has appeared on this site very often looked as if it were a statement taken from a doctor or approved by one. At least the chats where there are . doctors are very careful to answer questions without committing themselves and always referring to published materials. Not a single doctor has actually ever stated personal statistics or opinions. They are educational and safe as they are moderated medically but are all constant repeats. No one’s fault just a scleroderma fact of life. There is nothing new. I am still waiting now over five years for the results of Sharon Monskey’s experience with Relaxin. She was the first to ever try it. Has anything ever been published? If what is now going to result here upsets you it is your own doing. Had you and Wendy and Jaimes behaved in a lady like fashion this area would still have others posting. You have to live with your own creation. Regards Tamara
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X-No-Archives: Yes Ms Tamara Tiara, Lighten up…get a grip or what ever. Your post telling Sherry about elbows and skin tears was very helpful and thoughtfull. See, I knew there was a lot of good in you. But you won’t let it loose. I told you last night that we had some very interesting chats about nursing. That was another thing we had in common. Perhaps we should both lightnen up. And no , I am not depressed. For what? I have too much to do to be depressed. I was very depressed when my sister was diagnosed with cancer, and my little O’bear died, and of coarse my parents. I thank you for your concern. I will check with my Rheum. tomorrow and see if he thinks I am depressed. Two months ago he felt I was trying to take care of the world. Well, once a nurse, always a nurse. It is in my blood and soul (caring for people). Again, thanks for being concerned. We all have down days. The past 2 days have not been down days for me. Wendy
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Sherry if you would kindly copy and paste anything that I have written that is "hateful" I would be happy to appologize. I don’t know what you have been told but all I have stated in this area are my opinions. If they are not agreed with I have no trouble with that. I do have a problem with the rudeness. . I am looking to read posts from some new patients and interested in the experiences of the hundreds of other patients. This area is frequented by the same handful with the same questions and the same answers over and over again. It is not a private e-mail area. You personally have asked questions that you have answers to posted in your website. To illustrate this. You asked about an elbow ulceration. in your website you have a tremendous area devoted to wound care which even gives the names and addresses of wound care centers. In NY on Oct. 18th. It is now public and I feel historical that both doctors Harry Spiera and Dr. Thomas A. Medsger jr. will appear at an educational meeting together. To me these two doctors represent our only hope of there ever being a cure found in our life time.. You know as well as I do that they are the mentors to every other well known rheumatologist. The RSVPs that were called in already show a standing room only crowd. This seminar exploded within a day of the first invitation being received. These two doctors have remained humble and have never called attention to their achievements. I again will repeat. I will continue to state my opinions and do not intend to leave this news group. So please filter me out since we don’t agree on the format here and I am not going to waste my knowledge arguing with you or the other handful of rude patients.. Regards Tamara
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- Hide quoted text — Show quoted text ->x-no-archives: yes> >>Sherry if you would kindly copy and paste anything that I have written that >>is >>"hateful" I would be happy to appologize. I don’t know what you have been >>told >>but all I have stated in this area are my opinions. If they are not agreed >>with I have no trouble with that. I do have a problem with the rudeness. >>. >>I am looking to read posts from some new patients and interested in the >>experiences of the hundreds of other patients. This area is frequented by >>the >>same handful with the same questions and the same answers over and over >>again. >>It is not a private e-mail area. You personally have asked questions that >>you >>have answers to posted in your website. To illustrate this. You asked >about >>an elbow ulceration. in your website you have a tremendous area devoted to >>wound care which even gives the names and addresses of wound care centers. >> In NY on Oct. 18th. It is now public and I feel historical that both >>doctors Harry Spiera and Dr. Thomas A. Medsger jr. will appear at an >>educational meeting together. To me these two doctors represent our only >>hope >>of there ever being a cure found in our life time.. You know as well as I >do >>that they are the mentors to every other well known rheumatologist. The >>RSVPs >>that were called in already show a standing room only crowd. This seminar >>exploded within a day of the first invitation being received. These two >>doctors have remained humble and have never called attention to their >>achievements. I again will repeat. I will continue to state my opinions >and >>do not intend to leave this news group. So please filter me out since we >>don’t >>agree on the format here and I am not going to waste my knowledge arguing >>with >>you or the other handful of rude patients.. >>Regards Tamara >Tiara, >What do you do? Clean these kind Doctors offices? You certainly love to >throw >those names around. Are you retrieving old disposed of paper from the trash >cans? >Quite honestly, who cares of your bits and pieces of information which is not >productive, but very wordy and long. >And just how do you know what Sherry has on her web site and in her digest> >Do >you realize that many people who don’t post directly here, e-mail around to >us? >And , I read your posts for a good laugh, not for your knowledge. >Subject: Re: To Tiara or Miriam it is right >Path: >lobby03.news.aol.com!newstf02.news.aol.com!audrey03.news.aol.com!not-for-m ail >From: phoeni…@aol.com (Phoenix40) >Newsgroups: alt.support.scleroderma >Lines: 51 >NNTP-Posting-Host: ladder02.news.aol.com >X-Admin: n…@aol.com >Date: 30 Sep 1998 05:30:18 GMT >Organization: AOL http://www.aol.com >References: <19980929214453.25966.00004…@ng38.aol.com> >Message-ID: <19980930013018.24477.00003…@ng150.aol.com>
Perhaps I have already commented on the above statement. Ms. Tiara, There are new patients every day and not everyone has access to Sherry’s web site. Sherry is doing a very good service by bringing up problems, issues that may affect some of us and also the new ones. She is not repeating problems just to fill up a board. You must remember that their are new patiens that are lurking, and are learning things that we may have already have discussed. Should she exclude those who are recently diagnosised or are their wits end and are looking for support? Everything about Sd is worth repeating, if only for the new folks. Visit any medical site and you will have repeat questions and answers. Vist the plumbing or automotive sites. They too have repeat questions and answers because there are new people with the problem that was answered a month ago. I would suggest to all of us…just jump over the "repeat question and answer" and go on to the next topic. I have never heard anyone complain about this problem. It is only a problem if you make it one. Wendy
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To go further in this message. No one wishes you to leave the newsgroup. What we wish is that your presence here would be a pleasant one instead of what it is. Can you please show to us that you can come here and behave according to how someone should behave in a newsgroup meant to support patients and their family members? If you would simply do that than no one else would find the need to respond to you hatefully. This situation is of your making and it could be fixed simply by you acting on the earlier message I wrote in friendship. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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>I had forgot all about it till I >read her page.
I meant to type till I read her message not Page. Sorry bout that. Sherry Messick Visit my Surviving Scleroderma http://www.SclerodermaSupport.com The Scleroderma & Autoimmune Digest Email Support List http://www.SclerodermaSupport.com/list.htm "We are all Beacons of Light for each other" Oprah Winfrey
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>And , I read your posts for a good laugh, not for your knowledge
You refer to me as being hateful? I also receive the digest.. Also the two doctors that are appearing at the meeting are my personal physicians. Both will never be found online. I would take their word as gospel over anything I read. Also I still don’t see what you are contributing to this site. You cannot get me angry Wendy. I see in you a tormented patient. If being rude to me in some fashion gives you some relief then by all means. For whatever reason it was once sited that scleroderma carries the highest rate of depression out of all the immune diseases. If what you are doing here towards me in any way aids your illness at least I may not have good knowledge but I am of some help. Wishing you Peace of Mind Tamara
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Tiara82 wrote in message <19980930114213.09343.00004…@ng109.aol.com>… >Sherry, >I am still waiting for you to copy the posts you find "hateful" I would like >to see them. Maybe I am missing something along the line.
You’re missing more than "something", lady. You’re a couple fries short of a Happy Meal… 3 cans short of a sixpack…not all your dogs are barking… All I see at this >point is that things have reached a level where since the attacks on me >continued no one new is posting.
I’M NEW! I’M NEW! Maybe it’s because people don’t want to be harassed by such a sick, evil, twisted troll like yourself. >I do feel this area should be closed. I am >sincerely sorry but that is my honest opinion. I maintain that it is a >danger. Far too much medical information has been printed.
And the truth shall set ye free, eh? Anyone with more than 2 neurons to rub together knows to take what is posted here with a grain of salt, and anyone who acts without the consultation of their doctor is quite foolish. Try to rmgroup this newsgroup, and I’ll have it back up before you finish sending your packets. THEN we’ll see how well the FBI cottons to such shennanigans. I’ve already had a couple of people "visited" by the FBI for their loonery, and I have absolutely no reservation to do it again. >This area is not a fun time site.
Only because you make it so. >It is taken very seriously by many who do not post. This needs to be
addressed. Yes. Go away. You’re scaring off too many people. >Due to this and the lack of medical moderation it should be eliminated.
What twisted logic you have. As long as one post exists on spool on a news server anywhere, this group remains valid. This is Usenet, baby. It’s not going to have "medical moderation". You haven’t a clue as to what Usenet is, do you? It’s NOT an AOL chat room , and it’s NOT an AOL message board. You’re in MY territory now. Make any sort of move to "eliminate" this newsgroup, and I’ll show you the full power of the Cabal. I promise you that. >If there was a way to do it I would go through the proper channels.
There is a couple of ways to do it, but I’m not going to tell you (tee-hee!). >However I think the rude exchanges that have been demonstrated here this
week have done the job. Welcome to Usenet- land of the flame, and home of the rude comment. Ever wonder what the second post to Usenet was? A flame for the first. Just because you’re a troll, and everyone knows it, doesn’t mean that this newsgroup goes bye-bye. Why not go make your own newsgroup, and have all your sockpuppet "doctors" moderate it? It’s rather simple to do, really. >Look around.
I do, and I see a bunch of people, engaging in positive communication about a problem, and one troll with her own agenda. Guess which one isn’t like the others? One of these kids ain’t quite the same…. >If I were wrong I would not have received the amount of responses that >I have.
You’re wrong, and you’re lying anyway. Post some proof, or shut up. >This to me serves to validate my opinions and shows that the desire >here was to halt my comments.
Their only desire to halt your comments is becasue you’re a troll, and adding nothing of value to this newsgroup. >I know that I am right about how much of a danger medical info is with the
absence of a true medical >moderator. Usenet isn’t moderated. When will this get through your head? This is the place where in one click, you can get info on gun running, the best bongs, pedophilia stuff, and hints on that hard new adventure game you just bought. >What has appeared on this site very often looked as if it were a statement taken from a >doctor or approved by one.
You ASSUME that…. ASSUME- You make an ASS out of U and ME. Like I previously said, anyone with more than 2 neurons to rub together knows that nobody here is a doctor, and all concerns should be discussed with their physician. YOU obviously don’t know any better. At least the chats where there are . doctors are >very careful to answer questions without committing themselves and always >referring to published materials. Not a single doctor has actually ever stated >personal statistics or opinions. They are educational and safe as they are >moderated medically but are all constant repeats.
Chats != Usenet. (That means that chats are not Usenet) >If what is now going to result here upsets you it is your own doing. Had you >and Wendy and Jaimes behaved in a lady like fashion this area would still have >others posting. You have to live with your own creation.
Not from my statistics- I’ve seen a steady increase in postings to this newsgroup since I started monitoring it. With lots of new faces all the time. For every poster, there are about 10-20 that lurk, possibly more. Get real, get a life, get some medical attention. —– Cabal Agent #1 Eric Keman- The world’s first Artificial Stupidity program?
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> You refer to me as being hateful? I also receive the digest..
I don’t care if you do get the digest. The important thing is that if you post there you are forced because I moderate to act like a lady. I welcome your posts here and there when they are intelligent and helpful. But not when they are hateful and rude and provocative. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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Wendy even if you are depressed that has nothing to do with the issues here. Shoot my brother died suddenly in may and I have been grieving horribly but it hasn’t altered my personality and it sure hasn’t altered yours. If she wishes to get onto the discussion of psychology here I think she would be better served to side track this one. LOL. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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