Question:

I suspect that the warning on A to Z will have the opposite effect…it will make people curious and MORE likely to visit.  Then we’ll just have to show how nice and supportive we are!

Response:

Apple Annie wrote in message

<19991005110109.08993.00000…@ng-cd1.aol.com>… >website.. Who does she think she is to say that " It is an entirely unmoderated >newsgroup, with no recourse available for those who are troubled or harmed by >other members of the group."

Annie, she says that because she asked me via email if the group was moderated and I said no.  Though Shelley did make this assumption on her own, she is mostly correct in saying there is no recourse available also, since history over the last 3 years with a pesky AOL troll here showed that, regardless of how many people reported in how many ways to the powers that be, it was only silenced by the pressure tactics of troll slayers. I’d suggest you do what I’ve been doing since seeing the "warning" – writing directly to Shelley and discussing merits vs. risks of unmoderated forums instead of posting here to no avail.

Response:

>I suspect that the warning on A to Z will have the opposite effect…it will >make people curious and MORE likely to visit.  Then we’ll just have to show >how >nice and supportive we are!

Good point! Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com

Response:

Through some surfing it has been found by a friend of mine that Shelley now has the following warning posted on her site at http://sclero.org/support/forums-message-bds/a-to-z.html "WARNING 10-1-99: We have verified reports regarding flaming, spamming, and disruptive postings originating from the alt.support.scleroderma newsgroup. It is an entirely unmoderated newsgroup, with no recourse available for those who are troubled or harmed by other members of the group. Therefore, we recommend that you seek out well-moderated lists which are members of the Scleroderma Webmaster’s Association." Now for my response. She has verified reports??????? She is the cause of the entire problem here. This just shows us that Shelley Ensz has no intention to be there for support to other people. She just wants to be highly regarded as important. That is obvious by her stance that she took here. She caused the entire problem here and for her to now say on her page that "WE" meaning her site have verified reports is sickening. She caused the conflict here, yet is not willing to accept that responsibility.How much verification did that take for her to figure out? She would rather flame people publically on her own website.. Who does she think she is to say that " It is an entirely unmoderated newsgroup, with no recourse available for those who are troubled or harmed by other members of the group." She doesn’t have any idea what type of support we offer here in this newsgroup. I am here to tell everyone it is a Heck of a lot more than she offers. Is this the type of person we want representing scleroderma online? I sure hope not. I am so mad right now. I need that jar of smiles passed to me again. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com

Response:

Thanks for making this point, leanne!!! Leanne1957 wrote in message

<19991005174929.20935.00001…@ng-fo1.aol.com>… – Hide quoted text — Show quoted text ->I suspect that the warning on A to Z will have the opposite effect…it will >make people curious and MORE likely to visit.  Then we’ll just have to show how >nice and supportive we are!

Response:

Ditto, Leanne! Ditto ditto, Annie!! Hey, Leanne! Long time no see, no speak <guilty as charged>! What are you up to these days! –Jaimes – Hide quoted text — Show quoted text -Leanne wrote: > >I suspect that the warning on A to Z will have the opposite effect…it will > >make people curious and MORE likely to visit.  Then we’ll just have to show > >how > >nice and supportive we are! > Good point! > Smiles > Apple Annie > ***To reply remove "nospam" from my address*** > My favorite scleroderma and arthritis sites are…. > http://sclerodermasupport.com > http://ihavescleroderma.com > http://www.toad.net/~dreichard/ > http://arthritisnet.com

Response:

On 05 Oct 1999 15:01:09 GMT, applespi…@aol.comnospam (Apple Annie) wrote: >Through some surfing it has been found by a friend of mine that Shelley now has >the following warning posted on her site at >http://sclero.org/support/forums-message-bds/a-to-z.html >"WARNING 10-1-99: We have verified reports regarding flaming, spamming, and >disruptive postings originating from the alt.support.scleroderma newsgroup. It >is an entirely unmoderated newsgroup, with no recourse available for those who >are troubled or harmed by other members of the group. Therefore, we recommend >that you seek out well-moderated lists which are members of the Scleroderma >Webmaster’s Association."

What’s happening here? Did I miss something this past week? This is a wonderful news group. I’ve seen some good natured kidding around, but never any heavy duty flaming. We’re among friends here. It seems that every news group from time to time has someone who drifts in and tries to cause havoc. Bob – alle…@tiac.net ICQ 6418621

Response:

I am sorry that the newsgroup has a history of a resident troll. I don’t see where that applies to this situation. >I’d suggest you do what I’ve been doing since seeing the "warning" – writing >directly to Shelley and discussing merits vs. risks of unmoderated forums >instead of posting here to no avail.

The problem with this idea is that I don’t get a response. Amie I just shared my thoughts on the situation here and on the warning posted on A to Z. People reading this newsgroup will either agree with my views or not. What I wrote is how "I" feel about the situation. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com

Response:

<<<Hey, Leanne! Long time no see, no speak <guilty as charged>! What are you up to these days! –Jaimes >>> Hi Jaimes!  Not much new here!  I’m doing fine…Paul had a bit of a flare this summer and felt kinda lousy, but he seems to be on the upswing.  Hope all is well with you! Leanne

Response:

Point well taken, Annie.  I just wanted to clarify the source of the "unmoderated" statement in Shelley’s message – the rest is obviously moot if Shelley won’t answer your email.  Sorry. Apple Annie wrote in message

<19991005133824.12873.00001…@ng-fm1.aol.com>… – Hide quoted text — Show quoted text ->I am sorry that the newsgroup has a history of a resident troll. I don’t see >where that applies to this situation. >>I’d suggest you do what I’ve been doing since seeing the "warning" – writing >>directly to Shelley and discussing merits vs. risks of unmoderated forums >>instead of posting here to no avail. >The problem with this idea is that I don’t get a response. Amie I just shared >my thoughts on the situation here and on the warning posted on A to Z. People >reading this newsgroup will either agree with my views or not. What I wrote is >how "I" feel about the situation. >Smiles >Apple Annie >***To reply remove "nospam" from my address*** >My favorite scleroderma and arthritis sites are…. >http://sclerodermasupport.com >http://ihavescleroderma.com >http://www.toad.net/~dreichard/ >http://arthritisnet.com

Response:

Hi, Bob, Cruise through the archives to get the skinny. I was going to post about the Warning but I think I’ll just let it speak for itself. The site manager must have been compelled to not support this group, among others, and the Warning was the blunt sword of choice. To consider this strange is an understatement, and it is a definitive reflection on the site and its associates. Personally, I thinks it sucks the Big Kahoona… Take care and be well! –Jaimes – Hide quoted text — Show quoted text -Bob DeSavage wrote: > On 05 Oct 1999 15:01:09 GMT, applespi…@aol.comnospam (Apple Annie) > wrote: > >Through some surfing it has been found by a friend of mine that Shelley now has > >the following warning posted on her site at > >http://sclero.org/support/forums-message-bds/a-to-z.html > >"WARNING 10-1-99: We have verified reports regarding flaming, spamming, and > >disruptive postings originating from the alt.support.scleroderma newsgroup. It > >is an entirely unmoderated newsgroup, with no recourse available for those who > >are troubled or harmed by other members of the group. Therefore, we recommend > >that you seek out well-moderated lists which are members of the Scleroderma > >Webmaster’s Association." > What’s happening here? Did I miss something this past week? This is a > wonderful news group. I’ve seen some good natured kidding around, but > never any heavy duty flaming. We’re among friends here. It seems that > every news group from time to time has someone who drifts in and tries > to cause havoc. > Bob > – > alle…@tiac.net > ICQ 6418621

Response:

Question:

This was the first conference I attended and I was amazed at all the wonderful information there. Information from Doctors and patients. You can get alot from other people with the same thing you have. It was a fun time. I hope to do it again next year. We even got in on a dognapping and got to eat part of the ransom. LOL Syl Shelley Ensz: Scleroderma from A to Z <webmas…@sclero.org> wrote in message news:3mWH3.34$hs.3125@monger.newsread.com… – Hide quoted text — Show quoted text -> Conference photos and slide shows of the fabulous time had by hundreds of > folks (over 500, as a matter of fact) at the national SF conference in San > Diego last month are posted online at: > http://www.sclero.org/support/photos/a-to-z.html > This includes slide shows of Jason Alexander, plus Jason Alexander and SF > board members hanging spoons from their noses!  No kidding!   You’ll see > hundreds of onliners here.  Browse the photos, meet the people and BE THERE > next year for the grandest time you can imagine plus oodles of super medical > information, too, by the very top docs in the world. > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages

Response:

Thank you Jaimes. I agree that if you are not an organization I don’t feel you should use that domain registration except as a last resort. I think I would just keep thinking of one till I found one that was available as a .com if it was my own personal site. I didn’t post my question because I thought they were being misleading. I assumed they were an organization and that I just couldn’t find how to join on their sites. I agree with your HO. I was honestly confused. Smiles Apple Annie ***To reply remove "nospam" from my address***

Response:

Shelley, It is so good to see you post here!!!! Please keep doing so as the information and support you offer is priceless. Colleen Shelley Ensz: Scleroderma from A to Z wrote: – Hide quoted text — Show quoted text -> Conference photos and slide shows of the fabulous time had by hundreds of > folks (over 500, as a matter of fact) at the national SF conference in San > Diego last month are posted online at: > http://www.sclero.org/support/photos/a-to-z.html > This includes slide shows of Jason Alexander, plus Jason Alexander and SF > board members hanging spoons from their noses!  No kidding!   You’ll see > hundreds of onliners here.  Browse the photos, meet the people and BE THERE > next year for the grandest time you can imagine plus oodles of super medical > information, too, by the very top docs in the world. > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages

Response:

Shelley: You’ve got some great pictures! But…we do too! Check out the SD World 1999 SF Conference Picture Page at: http://www.sdworld.org/Conference/conf99.htm We had SO much fun! What was fascinating was all the seminars and informational groups. I went to a great number and discovered what a difference it makes to know that there are really such caring doctors out there doing research. It was standing room only at these talks even though they were repeated to allow more folks to attend. The pictures are amazing, too. It has sure helped me put faces to the names I’ve seen here and there on the net. Oh, and don’t forget the other pictures you have of the Conference. The SWA web site at: http://www.sclero.org/support/swa/a-to-z.html has a picture from the very first SWA meeting. All those Webmasters in one room! I found it quite amazing that no one…not one….talked in HTML the whole night! <VVVBG> If any of you out there get a chance to go next year to the SF Conference, do go. I heartily recommend it! Judy —                                       SD World          Scleroderma and Other Autoimmune Diseases         Email Support List, Message Board , ICQ Chats                            http://www.sdworld.org Shelley Ensz: Scleroderma from A to Z <webmas…@sclero.org> wrote in message news:3mWH3.34$hs.3125@monger.newsread.com… – Hide quoted text — Show quoted text -> Conference photos and slide shows of the fabulous time had by hundreds of > folks (over 500, as a matter of fact) at the national SF conference in San > Diego last month are posted online at: > http://www.sclero.org/support/photos/a-to-z.html > This includes slide shows of Jason Alexander, plus Jason Alexander and SF > board members hanging spoons from their noses!  No kidding!   You’ll see > hundreds of onliners here.  Browse the photos, meet the people and BE THERE > next year for the grandest time you can imagine plus oodles of super medical > information, too, by the very top docs in the world. > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages

Response:

Conference photos and slide shows of the fabulous time had by hundreds of folks (over 500, as a matter of fact) at the national SF conference in San Diego last month are posted online at: http://www.sclero.org/support/photos/a-to-z.html This includes slide shows of Jason Alexander, plus Jason Alexander and SF board members hanging spoons from their noses!  No kidding!   You’ll see hundreds of onliners here.  Browse the photos, meet the people and BE THERE next year for the grandest time you can imagine plus oodles of super medical information, too, by the very top docs in the world. Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages

Response:

Annie, Now there’s a bonafied question indeed! I remember that Sherry had gotten SclerodermaSupport.org but because she was not an organisation or foundation, she thought better of it and uses .com so as not to misrepresent the web site. InterNIC documentation states that .org is ‘typically’ used by non-profits so there is no regulation against personal use. If it were me starting up a web site and the .com were not available, I might shoot for a .net, or .cc or .us. At last resort, because there is no regulation, I would go for .org. However, I would be sure to make it known that there is no association or organisation to join, no dues, no membership requirements, etc., so that people wouldn’t be confused. I saw your guestbook entry regarding joining and I am sorry you received no responses. I am very glad you posted it here! All that said, IMHO, just because it’s a .org and it may not be an organisation or foundation does not discount potentially valuable that may be found there! Find support wherever you can because there are as many wonderful as well as diverse resources on the web! Take care and be well! –Jaimes – Hide quoted text — Show quoted text -Apple Annie wrote: > Shelley and SDWorld. I am glad to see you posting here. I am curious about > something. I noticed you both use the .org in your domain name. Does your > websites represent an organization or did you just choose those domains? I have > been trying to join all the scleroderma organizations out there because I > figure they are all working for the common good related to our disease. I > couldn’t find membership information on either of your sites. I asked in both > of your guestbooks and emailed you but didn’t get a response. I wasn’t sure if > it was your personal website and you just chose to represent it as a .org > domain or if you are actually a site representing an organization. If you are > an organization let me know how I can join. I am not rich but I feel even my > yearly membership dues in all the organizations for scleroderma help at least a > little. I joined the scleroderma foundation already and my local chapter. > Smiles > Apple Annie > ***To reply remove "nospam" from my address***

Response:

Yes great photos Shelley. I assume you are refering to the SF Conference not the DC Bash in your subject heading.  The conference is great. I really find that we have a lot of comadarie there. It is so nice to meet others. Especially those we have met online. It is like a massive hug fest. I always enjoyed the looks on peoples face when they would glance down at a name tag and realize it was an email buddy or a chat pal. BTW Welcome to the newsgroup. We have a lot of fun here. Sherry Messick Visit Surviving Scleroderma http://SclerodermaSupport.com The Scleroderma & Autoimmune Digest Email Support List http://SclerodermaSupport.com/digest "We are all Beacons of Light for each other" Oprah Winfrey

Response:

Shelley and SDWorld. I am glad to see you posting here. I am curious about something. I noticed you both use the .org in your domain name. Does your websites represent an organization or did you just choose those domains? I have been trying to join all the scleroderma organizations out there because I figure they are all working for the common good related to our disease. I couldn’t find membership information on either of your sites. I asked in both of your guestbooks and emailed you but didn’t get a response. I wasn’t sure if it was your personal website and you just chose to represent it as a .org domain or if you are actually a site representing an organization. If you are an organization let me know how I can join. I am not rich but I feel even my yearly membership dues in all the organizations for scleroderma help at least a little. I joined the scleroderma foundation already and my local chapter. Smiles Apple Annie ***To reply remove "nospam" from my address***

Response:

Question:

It’s all a matter of perspective in the end.  When I was diagnosed with pustular psoriasis, I was on a real pity party.  Then I started noticing other things that weren’t right and after extensive testing, was diagnosed with Scleroderma (CREST variant).  That put psoriasis down the list for things to cry about.  It’s painful and frustrating, but so far not going to kill me.  Also, I have much sympathy for all of you who have so much coverage on your bodies with the placque psoriasis.  At least I can put shoes (if I can stand them) on mine and keep it out of sight.  Bless all of us in our mutual struggle. — Posted via Talkway – http://www.talkway.com Exchange ideas on practically anything ™.

Response:

Everyone has different abilitites to handle adversity. He reminded us that we have this disease to varying degrees and as unique individuals, we have a large range of emotional capabilities in dealing with our illness.

Thanks Ava. That was the main point I was trying to make, and I think you just stated it more clearly (and comcisely) than I did. Regards, Ed

Response:

I read Ed’s very eloquent post this morning and have been thinking about it ever since. I think his post stated beautifully a point of view that I had selfishly not taken into account. Everyone has different abilitites to handle adversity. He reminded us that we have this disease to varying degrees and as unique individuals, we have a large range of emotional capabilities in dealing with our illness. For example, someone with more severe illness, like me (8 chronic diseases and counting!) and who is my age, 51, may have developed "thicker skin" (can’t seem to resist that pun!) than others. Young people have much more difficulty with this emotionally because surviving adolecence is already an awesome challenge, especially if you are, shall we say "cosmetically impaired." The different kinds of "P" also is something to consider. Thank you Ed for reminding me not to preach but to support. I still advocate "counting your blessings" as a coping mechanism, and I hope that others are able to use it. But future postings of mine will take into account the differences among us. Ava

Response:

I have p for 3-4 months now (on my feet) and I must say that on the first two months I have experienced different levels of depression and frustration. I remember that the first thing I said to myself was – "thank god I am married", cause I couldn’t believe that someone would like to be with me while I have such disease. but today, when I have learned much more about it and after I saw that people are not so shocked about it, I am much more relaxed. I think it is one of the things you must do (to relax) in order to get better. I am not better yet, but I am very happy to find this group and to learn much more things then I heard from my helpless doctor. I think this is the time to visit a nutrition and to go on that carb diet. be happy, Ori. – Hide quoted text — Show quoted text – I read Ed’s very eloquent post this morning and have been thinking about it ever since. I think his post stated beautifully a point of view that I had selfishly not taken into account. Everyone has different abilitites to handle adversity. He reminded us that we have this disease to varying degrees and as unique individuals, we have a large range of emotional capabilities in dealing with our illness. For example, someone with more severe illness, like me (8 chronic diseases and counting!) and who is my age, 51, may have developed "thicker skin" (can’t seem to resist that pun!) than others. Young people have much more difficulty with this emotionally because surviving adolecence is already an awesome challenge, especially if you are, shall we say "cosmetically impaired." The different kinds of "P" also is something to consider. Thank you Ed for reminding me not to preach but to support. I still advocate "counting your blessings" as a coping mechanism, and I hope that others are able to use it. But future postings of mine will take into account the differences among us. Ava

Response:

Question:

What’s the difference between an HMO, a PPO and the PLO? You can negotiate with the PLO. — Amie ——– I Have Scleroderma http://www.ihavescleroderma.com/

Response:

I Love It! I forward it to my Mom. Thanks – Hide quoted text — Show quoted text -Amelia Black Yaussy wrote: > What’s the difference between an HMO, a PPO and the PLO? > You can negotiate with the PLO. > — > Amie > ——– > I Have Scleroderma > http://www.ihavescleroderma.com/

Response:

Question:

>I am looking for information regarding the book called "What’s So Funny About >Scleroderma" by Karen Berndt.  If anyone out there has purchased the book, I >need the name of the publisher.  And if it is available, the ISBN number. >Thanks, >Rita

I have this book, but for some reason, it’s not where I thought it was.  It’s a book of cartoons.  I first learned about it from Amy Burkett of the Tri-State Chapter of the Scleroderma Foundation.  If you e-mail or call there, they might be able to give you the information (201/837-9826).  In the meantime, I’ll look around to see if I can find it. -Ronni- *********************************** Building Awareness for Scleroderma Is Crucial to Finding a Cure Scleroderma Foundation (1/800-722-HOPE)

Response:

Rita I may be wrong but I think SF had that last year at the conference. Contact them and find out. They probably either have it or would know where you can get it. Sherry CFRC <c…@aol.com> wrote in message

news:19990525151132.26249.00004652@ng-fx1.aol.com… – Hide quoted text — Show quoted text -> I am looking for information regarding the book called "What’s So Funny About > Scleroderma" by Karen Berndt.  If anyone out there has purchased the book, I > need the name of the publisher.  And if it is available, the ISBN number. > Thanks, > Rita

Response:

I checked with the Foundation office and they do not have this information.  I hope someone out there can help. Rita – Hide quoted text — Show quoted text ->Rita I may be wrong but I think SF had that last year at the conference. >Contact them and find out. They probably either have it or would know where >you can get it. >Sherry >CFRC <c…@aol.com> wrote in message >news:19990525151132.26249.00004652@ng-fx1.aol.com… >> I am looking for information regarding the book called "What’s So Funny >About >> Scleroderma" by Karen Berndt.  If anyone out there has purchased the book, >I >> need the name of the publisher.  And if it is available, the ISBN number. >> Thanks, >> Rita

Response:

To Rita The book in question that you are trying to find: What’s so funny about Scleroderma, I received as a Christmas gift and the person who got it, got it from the Scleroderma Foundation. On the back page of the Scleroderma Foundation Newsline is an order form and a listing of all the literature that is available. Doris

Response:

>Subject: Re: Scleroderma Book >From: rsm…@aol.com (RSM USF) >Date: 5/27/99 8:52 PM Eastern Daylight Time >Message-id: <19990527205234.01867.00000…@ng-ck1.aol.com> >>I am looking for information regarding the book called "What’s So Funny >About >>Scleroderma" by Karen Berndt.  If anyone out there has purchased the book, I >>need the name of the publisher.  And if it is available, the ISBN number. >>Thanks, >>Rita

Found the book.  There’s no ISBN number.  It appears the book was self-published by the Chicago Chapter of the Scleroderma Foundation (with Mosby Publishing Company).  Copyright is 1990.  Check with the SF’s headquarters for the number of the Chicago Chapter. Ronni

Response:

I am looking for information regarding the book called "What’s So Funny About Scleroderma" by Karen Berndt.  If anyone out there has purchased the book, I need the name of the publisher.  And if it is available, the ISBN number. Thanks, Rita

Response:

Hmmm Now I am stumped. I am sure someone had this book at the conference in Houston. Maybe it was a chapter. Do you know what if any chapter or support group she is affiliated with. Maybe they had a table with the book. Hmmmmmm. I will have to go back in my archives folder because I remember someone mentioning it before either in the digest or in an email to me. I’ll let you know if I find anything. Love ya Sherry CFRC <c…@aol.com> wrote in message

news:19990526155318.02113.00006881@ng-ca1.aol.com… – Hide quoted text — Show quoted text -> I checked with the Foundation office and they do not have this information.  I > hope someone out there can help. > Rita > >Rita I may be wrong but I think SF had that last year at the conference. > >Contact them and find out. They probably either have it or would know where > >you can get it. > >Sherry > >CFRC <c…@aol.com> wrote in message > >news:19990525151132.26249.00004652@ng-fx1.aol.com… > >> I am looking for information regarding the book called "What’s So Funny > >About > >> Scleroderma" by Karen Berndt.  If anyone out there has purchased the book, > >I > >> need the name of the publisher.  And if it is available, the ISBN number. > >> Thanks, > >> Rita

Response:

Question:

Hi, Join in the celebration with us. Karen Vanhorne announced tonight in the AOL Scleroderma Chat that her brother Jason Alexander (Seinfeld) recently was a contestant on Hollywood Squares and won $50,000 for scleroderma research. We do not have a date for airing right now. Hopefully we will be able to find out when the planned date of airing is soon. Thank you Karen for letting us know and Jason thank you most of all. — *** Love, Hugs and well wishes From *** Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com "We are all Beacons Of Light for Each Other" Oprah Winfrey

Response:

>Hi, Join in the celebration with us. Karen Vanhorne announced tonight in >the AOL Scleroderma Chat that her brother Jason Alexander (Seinfeld) >recently was a contestant on Hollywood Squares and won $50,000 for >scleroderma research. We do not have a date for airing right now. >Hopefully we will be able to find out when the planned date of airing is >soon. Thank you Karen for letting us know and Jason thank you most of >all. >–

Jason, Karen and Ruth G. — our First Family!!  Each one of them has made enormous contributions on our behalf.  We are SO grateful!!! Ronni and the Scleroderma Foundation

Response:

RSM USF wrote: > Jason, Karen and Ruth G. — our First Family!!  Each one of them has made > enormous contributions on our behalf.  We are SO grateful!!! > Ronni > and the Scleroderma Foundation

Boy isn’t that the truth. Ruth is a really sweet lady. It is no wonder she has such compassionate children. Now if we can just get 100 more celebrities doing the same thing for scleroderma we might find that cure. — We Are Raising Awareness of Scleroderma Providing Support, Information and News Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com Scleroderma Foundation Greater Washington DC http://SclerodermaSupport.com/SFWashDC "We are all Beacons Of Light for Each Other" Oprah Winfrey

Response:

Question:

Wow I can relate to that one.  I thought I was losing weight cuz of the drugs.  Imuran and DPenn which I just finished have strong side effects of anorexia (lack of desire to eat not that you think you are fat)  I have been losing weight and now am skinny.  I see my rheumy Oct 26 and was planning to ask about that.  Got chubby before cuz of the cortisone.  I had not made the connection between my bowel and weight.  I guess that sounds silly but I just thought I had odd Bm’s.  Diarhea and bloating.  Thanks for the info.  I will explore this with el doctor.

Response:

> Sherry , did my note go to you only?

Yes Linda it did. Only this one came through to the newsgroup — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "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    \    //     ___/    \

Response:

I have been told that I have reflux, but it does not sound like what I usually read about, so I would like some advice. I have CREST, but no acid coming up my chest. Just lately though I have had what I thought was "irritiable bowel syndrome", at least that is what I was told many years ago. What do you think? First I get gas, then pressure to make bowel movements, then nasuea, and vomiting, After that anything that is left in me comes out as diaherrea. Then I have a queasy stomach for days. I am afraid to eat anything solid. I have been given Propulsid for the reflux, and just yesterday Librex for the queasiness. All this had stopped two years ago just about the time I started the antibiotics doxiclycline and clindamycin. I was tested to make sure it was not the antibiotics. I also have no inflammation (I had a colenoscopy). I was told I do have divitriculosis (pockets in the digestive track). Does anyone have reflux that sounds like this? Sorry this is so graphic and disgusting, but I am really concerned, and uncomfortable. LindaTC

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Sherry , did my note go to you only? I don’t see it on the board. Well, at least it went to the one person who has the same yucky symptoms. I did speak to my docs office. they told me to stay on liquids till I feel better. Well, I guess I will be a size 10 this way. Feel good, Linda

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Thanks you all for your input. I guess I try to use denial of these symptoms. I now realize that I must have had reflux years ago! Once again I seem to have lost the symptoms. I can only hope they stay away. For you all too. Linda

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Hi Linda: I have had reflux for many years however that doesn’t make me an expert. A lot of what you say is happening to you happens with sceroderma reflux and bowel symptoms.  Boy, do I know about digestive problems from not making it to the toilet on time to bloated stomach that looks if I am 10 months pregnant.  If forget  to take my propulsid at night then.morning vomiting. .  It doesn’t matter what I eat or how much I watch my diet.  Lots of things help, raising the head of your bed on blocks, not eating late at night and not wearing things that are tight around your waist ,they have helped me a lot. I hope things are better for you.   Gigi

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Linda I have similar symptoms as you describe and my GI doc feels it is due to immobility of my bowels and colon. Unfortunately the common drugs that are used don’t seem to improve my gassy, crampy, and yes the rest of what you shared symptoms. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "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, thanks for the quick reply. I thought the reflux was just the acid > in > the throat. > I was not going to follow docs orders, but your response makes my head feel > better if not my gut. > Linda

Hi Linda since you intended your message to go to the NG I thought I would reply and quote your message in its entirety so it is shared in the NG. Going on soft or liquid diets and even veggie diets have helped me. They are hard to adhere to though. Meats or what I refer to as bulky foods are what seem to bother me the most. Meats, heavy amounts of pasta. I have found that I can tolerate about 1/2 cup of spaghetti without it cramping me. Now this has been going on for some time but has gotten much worse since my surgery in August. I think that the surgery through my body for a loop because my tummy troubles have multiplied since then. Meats are a big culprit. I cramp at first. I mean realllly cramp. The kind of gassy double over and cry cramping. This lasts for about 1 to 2 hours and happens off and on. Sort of like a squeazing cramp that begins and then gets worse and worse till it reaches a peak that you think you are about to die from and then it begins to ease up. Then it will make me feel like I need to go to the bathroom and I’ll have several bowel movements and then as you put it the diarrhea begins. Actually I am glad to see that come because this is when the pain ends. This routine continues for a few hours. These episodes happen everytime I eat meat, fresh fruit with skins, more than about 1/2 cup of pasta, and some dairy products. I use to only do it a few times a week and not always with any consistencies to definate foods but it has really seemed to present itself in a pretty constant manner over the last month. I have tried to eat anyway and just deal with the pain but my doc said that I am risking perforating my colon. I am sure this sounds very familiar to many of you. It is a horrible feeling and I really feel for anyone having to endure it. I have an appt with a dietician to try and work out a meal plan that we think I might be able to tolerate. Although I am not by any means skinny my weight has diminished significantly over the last month. Enough that we know something major is going on in my tummy. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "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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Linda you might find the Surviving Scleroderma Gastrointestinal Involvement page beneficial to visit. Here is the link http://www.SclerodermaSupport.com/med-gi.html There is a lot of discussion there about Reflux and other GI problems we often encounter with scleroderma. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "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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Question:

To all, A few weeks ago I was asked to send some messages out on the internet for a friend (colleague) who had scleroderma.  I found this group and had quite a few replies, which I was thankful for as well as Pat, my friend. Pat had diffuse scleroderma as well as pulmonary hypertension.  It took a while for her to be diagnosed and the she received the news in November, last year,  of what she was suffering.  There is quite a bit to Pat’s story but at this stage I would prefer to check with her family before going into it more. The sad news is that last Friday, 27th Feb, Pat quietly passed away.  She had a lot to offer people and she will be greatly missed by all.  She was very appreciative of the information which I could pass on to her and her attitude was that her experience may help other sufferers. I thank all those people who replied and I will attempt to send a personal email. Thanks Philip

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I am so sorry for the loss of your friend. I thank you on her behalf for being such a loyal and steadfast friend. We all need someone like you for a friend. Thank you for letting us all know about her and I wish we could have got to know her better. Please do stay in touch.

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- Hide quoted text — Show quoted text -P Hills wrote: > To all, > A few weeks ago I was asked to send some messages out on the internet for a > friend (colleague) who had scleroderma.  I found this group and had quite a > few replies, which I was thankful for as well as Pat, my friend. > Pat had diffuse scleroderma as well as pulmonary hypertension.  It took a > while for her to be diagnosed and the she received the news in November, > last year,  of what she was suffering.  There is quite a bit to Pat’s story > but at this stage I would prefer to check with her family before going into > it more. > The sad news is that last Friday, 27th Feb, Pat quietly passed away.  She > had a lot to offer people and she will be greatly missed by all.  She was > very appreciative of the information which I could pass on to her and her > attitude was that her experience may help other sufferers. > I thank all those people who replied and I will attempt to send a personal > email. > Thanks > Philip

Thank you for letting us know what happened.  I’m very sorry for the loss of your friend, but happy that she had someone so caring as you with her in the most difficult time. — Amie http://pw1.netcom.com/~yaussy/

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Question:

Happy New year everyone Teresa

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TT wrote: > Happy New year everyone > Teresa

I second that!  Happy and Healthy New Year to all! — Amie http://pw1.netcom.com.yaussy/

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>Happy New year everyone >Teresa

Yes!  And out with the old, in with the new. Let’s all hope that the Scleroderma Foundation, which was born this week, will be able to accomplish all the goals that the United Scleroderma Foundation and the Scleroderma Federation set in motion so well. Ronni Scleroderma Foundation Board

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Question:

I’m so glad you’ll be here with us, Ed. For those who don’t know him, Ed is THE original SD net pioneer.  He was really the first who gave SD a net presence. His excellent FAQ was used as the FAQ for this newsgroup. He is very knowledgable and articulate. Welcome to A.S.S (I know – we’re acronymically challenged!) Kate – Hide quoted text — Show quoted text -Ed Harris wrote: > To all, > My internet provider FINALLY added an improved news server and I can > now get this news group.  I will be actively monitoring the group and > participating whenever I can. > For those of you who do not know me from previous involvement in the > arthritis newsgroups, I am a 50 year old male who was diagnosed with > CREST about 7 years ago.  I have taken a very proactive approach to > managing my illness with the help of two supportive physicians and as > a result have been able to implement a number of experimental > treatments and alternative drugs.  For the past 4 years I have been > getting regular plasmapheresis treatments which has had a dramatic > effect on the disease, both improving symptoms as well as objective > test results.  As an experiment, I was just taken off the treatment > for a number of months to see what would happen.  After about 3 months > after I would have normally begun another round of plasmapheresis > treatments, I started getting worse for the first time in four years. > This was enough to convince my physicians and I have started > treatments again. > I have also experimented with antibiotic therapy for two years but did > not see any obvious effect, for example, improvement in my ANA level > so I discontinued treatment about 4 months ago. > I am also the author of the Scleroderma FAQ located at > http://www.he.net/~fredt/faqs/scleroderma. > If anyone is interested I can also send you an article on my own > situation and treatment approach which gives more information than the > brief summary above. >                                 Ed Harris >                                 ehar…@synnovation.com > —————————————————————– > Ed Harris                                ehar…@synnovation.com > If found listless or depressed, administer chocolate immediately! > —————————————————————–

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To all, My internet provider FINALLY added an improved news server and I can now get this news group.  I will be actively monitoring the group and participating whenever I can. For those of you who do not know me from previous involvement in the arthritis newsgroups, I am a 50 year old male who was diagnosed with CREST about 7 years ago.  I have taken a very proactive approach to managing my illness with the help of two supportive physicians and as a result have been able to implement a number of experimental treatments and alternative drugs.  For the past 4 years I have been getting regular plasmapheresis treatments which has had a dramatic effect on the disease, both improving symptoms as well as objective test results.  As an experiment, I was just taken off the treatment for a number of months to see what would happen.  After about 3 months after I would have normally begun another round of plasmapheresis treatments, I started getting worse for the first time in four years. This was enough to convince my physicians and I have started treatments again. I have also experimented with antibiotic therapy for two years but did not see any obvious effect, for example, improvement in my ANA level so I discontinued treatment about 4 months ago. I am also the author of the Scleroderma FAQ located at http://www.he.net/~fredt/faqs/scleroderma. If anyone is interested I can also send you an article on my own situation and treatment approach which gives more information than the brief summary above.                                 Ed Harris                                 ehar…@synnovation.com —————————————————————– Ed Harris                                ehar…@synnovation.com If found listless or depressed, administer chocolate immediately! —————————————————————–

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