Scleroderma Information » Scleroderma » Morning Update on Sherry
Question:
><HTML><PRE>Subject: Re: Morning Update on Sherry >From: mss…@aol.com (MSSDNY) >Date: Fri, Aug 14, 1998 11:38 EDT >Message-id: <1998081415381300.LAA14…@ladder03.news.aol.com>
Dear MS, I had a very similar experience with the FMS NG. I have had fibro for many years and several months was finally confirmed to have scleroderma. I reached out to this NG and was treated disgustingly. One thing, Sherry was never one of the people to be abusive. She really has given her all. This group barely exists and even the foundation if you read the article written by the Boston Globe is asking it’s members to remain off line. It is a very sad set of circumstances as there is very little in the way of support for scleroderma patients. The FMS group is exceptional and we do share alot with them. There are areas that cannot be addressed by the fms group that scleroderma patients need to understand. That is only my opinion. If I were you I would stop posting here as your posts will only cause you grief. Feel free to e-mail me at any time. There are a few others on the FMS NG with scleroderma but they wish to remain anonymous. I wish you well and also see NY in your signature. I live in NY and if you do also I would be more then happy to direct you to a group or a single patient to speak with in your area. I hope you are doing well, but the need to talk to another with the same problems can be a comfort. Sherry has been sincere from what I can see. The other(s) if any exist have destroyed what there ever was of this group. I don’t know if the litigatin you speak of is the same that I heard about concerning the use of research money to pay the way for may non- scleroderma pts and also chapter members to be financed for the Texas conference. I think it awful that research money be used for this purpose. In well over 40 years there is nothing new to aleviate scleroderma. Some medications can help with symptoms but with research money being used on anything other then research we will never have a cure. Sad but true. Looking forward to seeing you in the FMS NG even the doctors are removing themselves from the foundation board. That in itself should help to validate some of the anger you feel. Don’t let it rule you. Use your strength to get well. Love Always Liza – Hide quoted text — Show quoted text ->I wish Sherry well but I wonder why God would allow something like this to >happen to someone that is supposively such a great person. >I replied to a message in the fibro group and got raving responses. I >appreciate that they cared enough to reply to my posts.
Response:
I wish Sherry well but I wonder why God would allow something like this to happen to someone that is supposively such a great person. I replied to a message in the fibro group and got raving responses. I appreciate that they cared enough to reply to my posts. Be well MS
Response:
Sherry has now been in surgery for almost 2 hours. So I suppose no news is good news. They allowed me to stay with her until they did the central line and she was pretty drowsy. She was telling everyone in the room about scleroderma. She was a representative for everyone even after the drugs had her being loony. When they told me they were going to take her to the OR I kissed her goodbye and she said bye and that she loved me and then she said OH don’t forget to do my email. I had to laugh. The people tending to her burst into laughter. I have received several requests in email from some of you that wanted to send cards and flowers and wished to visit. Sherry will be in a ICU room for several days and they are not allowed flowers or visitors other then family. When she goes to a normal room in cardiac care I was told they also don’t like for cardiac patients to have flowers in their room. They ask the family take them home. So I would suggest that you wait till she goes home and send her cards then if you wish to. She will be able to enjoy them more then. Sherry wanted me to suggest to you that you could donate to The Scleroderma Foundation rather then spend your money on flowers and cards. I think they send out tribute cards or something to the person the money was donated for. This way she knows that you thought of her but the money went for a good cause. I went to the foundation webpage and will place the address below. Sherry and I don’t expect anything but your love, support and well wishes and we know that we have that. Scleroderma Foundation 89 Newbury Street Ste 201 Danvers, MA 01923 (800) 722-HOPE I will email everyone as soon as I know more. Gregg
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