Scleroderma Information » Scleroderma » Help and Support
Question:
Lately, there have been some comment on the lack of support within the newsgroup. I find that time to time this is so, and I believe that there are two reasons to this, 1.) that there is a limited number of people who subscribe due to the fact that not all newsreaders carry DeJa news, I myself have to go through the internet and not my default news reader. and 2.)Each and everyone of us have a separate life from this disease. Quite often when I chat with people online it is about everything but Scleroderma. SD is a part of me it is not me. In response to the comment about Sherry, most people who know Sherry and me, know that her and I don’t always get along, but due to this woman’s dedication (whatever the reason) she has brought alot of people together. (With Gregg’s Help) If you would have been to the conference in Houston you would have seen that the internet and Sherry’s digest has been a lifeline to many people. One thing support is not, is the bickering, I went to the conference and it is some of the best money that I ever spent. There was tons of information, the Doctors were very knowledgeable and friendly. Just talking to the foundation members I know that they care about each and every person. I had the pleasure of sitting with Karl at the closing banquet and from comments he made, not about SD but other things, I could tell he was a dedicated man to any cause he undertook. The final day of the conference, were speakers talking about the research that was going on. SD research has come along way. They are very close to finding what causes it and after that a cure is close behind. The doctors that spoke at the seminars gave me more information in and hour and a half than my Rheumatologist has in 4 years. I have not gone to the FMS newsgroup as I don’t have FMS, I do receive Sherry’s digest, I have made several online friends who have SD and from time to time I have received information from this newsgroup. There are numerous people out there who are willing to give you more support than you ever thought possible. I live in an area where there is no support groups, so the internet is my only support group, I know I am afraid of commenting on stuff due to the fact this stupid disease affects each person differently, so while we all have SD each have their own mountains to climb. In closing, no one can tell you that you will be okay. No one will tell you if something is normal, if you want to beat this disease it is up to you and no one else. My question to the ones who claim there is no support we need to know what you need. As individual as SD is, so is the defination of support. I need someone to talk to when the world crashes around me. My doctor handles my symptoms. To Ronni and others who are consistently here, Thank you this is one person who appreciates the support of this newsgroup. Jan http://www.geocities.com/HotSprings/Villa/3892/home.html —–== Posted via Deja News, The Leader in Internet Discussion ==—– http://www.dejanews.com/rg_mkgrp.xp Create Your Own Free Member Forum
Response:
Jan, Thank you for saying what I wanted to say because there is lots of support out there for anyone who wants it. I think that anyone that wants support can find what they want. If they really want to find it. Ronni, Karen, Nancy and so many others are out there to help us all anyone has to do is to ask. The Bluebonnet Chapter really enjoyed all the wonderful words that everyone had to say about the conference we really wanted everyone to go away from the conference feeling that there is something being done out there for all of us. Linda In article <6r6nso$ao…@nnrp1.dejanews.com>, g – Hide quoted text — Show quoted text -ilbe…@corpcomm.net wrote: > Lately, there have been some comment on the lack of support within the > newsgroup. I find that time to time this is so, and I believe that there are > two reasons to this, 1.) that there is a limited number of people who > subscribe due to the fact that not all newsreaders carry DeJa news, I myself > have to go through the internet and not my default news reader. and 2.)Each > and everyone of us have a separate life from this disease. Quite often when > I chat with people online it is about everything but Scleroderma. SD is a > part of me it is not me. In response to the comment about Sherry, most people > who know Sherry and me, know that her and I don’t always get along, but due > to this woman’s dedication (whatever the reason) she has brought alot of > people together. (With Gregg’s Help) If you would have been to the > conference in Houston you would have seen that the internet and Sherry’s > digest has been a lifeline to many people. One thing support is not, is the > bickering, I went to the conference and it is some of the best money that I > ever spent. There was tons of information, the Doctors were very > knowledgeable and friendly. Just talking to the foundation members I know > that they care about each and every person. I had the pleasure of sitting > with Karl at the closing banquet and from comments he made, not about SD but > other things, I could tell he was a dedicated man to any cause he undertook. > The final day of the conference, were speakers talking about the research > that was going on. SD research has come along way. They are very close to > finding what causes it and after that a cure is close behind. The doctors > that spoke at the seminars gave me more information in and hour and a half > than my Rheumatologist has in 4 years. I have not gone to the FMS newsgroup > as I don’t have FMS, I do receive Sherry’s digest, I have made several online > friends who have SD and from time to time I have received information from > this newsgroup. There are numerous people out there who are willing to give > you more support than you ever thought possible. I live in an area where > there is no support groups, so the internet is my only support group, I know > I am afraid of commenting on stuff due to the fact this stupid disease > affects each person differently, so while we all have SD each have their own > mountains to climb. In closing, no one can tell you that you will be okay. > No one will tell you if something is normal, if you want to beat this disease > it is up to you and no one else. My question to the ones who claim there is > no support we need to know what you need. As individual as SD is, so is the > defination of support. I need someone to talk to when the world crashes > around me. My doctor handles my symptoms. To Ronni and others who are > consistently here, Thank you this is one person who appreciates the support > of this newsgroup. > Jan > http://www.geocities.com/HotSprings/Villa/3892/home.html > —–== Posted via Deja News, The Leader in Internet Discussion ==—– > http://www.dejanews.com/rg_mkgrp.xp Create Your Own Free Member Forum
—–== Posted via Deja News, The Leader in Internet Discussion ==—– http://www.dejanews.com/rg_mkgrp.xp Create Your Own Free Member Forum
Response:
- Hide quoted text — Show quoted text ->Support >From: gilbe…@corpcomm.net >Date: 8/16/98 6:47 AM Pacific Daylight Time >Message-id: <6r6nso$ao…@nnrp1.dejanews.com> >Lately, there have been some comment on the lack of support within the >newsgroup. I find that time to time this is so, and I believe that there are >two reasons to this, 1.) that there is a limited number of people who >subscribe due to the fact that not all newsreaders carry DeJa news, I myself >have to go through the internet and not my default news reader. and 2.)Each >and everyone of us have a separate life from this disease. Quite often when >I chat with people online it is about everything but Scleroderma. SD is a >part of me it is not me. In response to the comment about Sherry, most people >who know Sherry and me, know that her and I don’t always get along, but due >to this woman’s dedication (whatever the reason) she has brought alot of >people together. (With Gregg’s Help) If you would have been to the >conference in Houston you would have seen that the internet and Sherry’s >digest has been a lifeline to many people. One thing support is not, is the >bickering, I went to the conference and it is some of the best money that I >ever spent. There was tons of information, the Doctors were very >knowledgeable and friendly. Just talking to the foundation members I know >that they care about each and every person. I had the pleasure of sitting >with Karl at the closing banquet and from comments he made, not about SD but >other things, I could tell he was a dedicated man to any cause he undertook. >The final day of the conference, were speakers talking about the research >that was going on. SD research has come along way. They are very close to >finding what causes it and after that a cure is close behind. The doctors >that spoke at the seminars gave me more information in and hour and a half >than my Rheumatologist has in 4 years. I have not gone to the FMS newsgroup >as I don’t have FMS, I do receive Sherry’s digest, I have made several online >friends who have SD and from time to time I have received information from >this newsgroup. There are numerous people out there who are willing to give >you more support than you ever thought possible. I live in an area where >there is no support groups, so the internet is my only support group, I know >I am afraid of commenting on stuff due to the fact this stupid disease >affects each person differently, so while we all have SD each have their own >mountains to climb. In closing, no one can tell you that you will be okay. >No one will tell you if something is normal, if you want to beat this disease >it is up to you and no one else. My question to the ones who claim there is >no support we need to know what you need. As individual as SD is, so is the >defination of support. I need someone to talk to when the world crashes >around me. My doctor handles my symptoms. To Ronni and others who are >consistently here, Thank you this is one person who appreciates the support >of this newsgroup. >Jan >http://www.geocities.com/HotSprings/Villa/3892/home.html >—–== Posted via Deja News, The Leader in Internet Discussion ==—– >http://www.dejanews.com/rg_mkgrp.xp Create Your Own Free Member Forum
Jan, Thank you so much for your above statement. You did a wonderful job of explaining the support we receive in the SD group. Sometimes there are few posts, and other times the board is busy. I think many go to the chats and also the digest is very supportive. And many times we e-mail around as we make friends. I was unable to attend the conference in Houstan and one more person (you) with positive comments says what a success it was and more important is the research that is being done. We (sd patients) are close to turning the corner of a cure and perhaps prevention. Thank you for posting. Wendy
no comment untill now