Scleroderma Information » Scleroderma » Help–just diagnosed
Question:
Hi Lyle: You are in the right place for support, we all are dealing with this disease on a daily basis and understand your fear. Someone to talk to is really good, so keep talking. I have had Scleroderma for 25+ years and am still enjoying my life (except for occasional bad days). If you want to write to me my email address is susa…@home.com. Susan – Hide quoted text — Show quoted text -Lyle wrote: > Just diagnosed with SD. Taking 30mg Prednisone per day for 2 months and > Imuran 100mg for one month. Have Raynaud’s in hands. Swelling in hands > and feet. Some esophogus problems but not bad yet. Sores on fingers > but note exactly ulcers. Just red and sore or sides of nails. Lung > involvment but it seems to be improving. Anybody similarly conditioned > who might give me suggestions on to live or die with this thing. I’m > still reeling. Thanks.
Response:
Hang in there, Lyle. We want you to LIVE with it – we’re very selfish with our friends and want to keep them around! 
– Hide quoted text — Show quoted text -Lyle wrote in message <36F46BBC.2EFB2…@texasonline.net>… >Just diagnosed with SD. Taking 30mg Prednisone per day for 2 months and >Imuran 100mg for one month. Have Raynaud’s in hands. Swelling in hands >and feet. Some esophogus problems but not bad yet. Sores on fingers >but note exactly ulcers. Just red and sore or sides of nails. Lung >involvment but it seems to be improving. Anybody similarly conditioned >who might give me suggestions on to live or die with this thing. I’m >still reeling. Thanks.
Response:
welcome to our family! we all have a little or lot of everything and we are here to help with questions,opinons and advice. as far as die w/this thing we do not view it as a death sentence but an opportunity for living life to its fullest. the path will not be easy at times just remember we are here and so is God. e-mail me any time rschi…@gulftel.com. post your story and read others you will learn alot…..love and hugs…….colleen – Hide quoted text — Show quoted text -Lyle wrote: > Just diagnosed with SD. Taking 30mg Prednisone per day for 2 months and > Imuran 100mg for one month. Have Raynaud’s in hands. Swelling in hands > and feet. Some esophogus problems but not bad yet. Sores on fingers > but note exactly ulcers. Just red and sore or sides of nails. Lung > involvment but it seems to be improving. Anybody similarly conditioned > who might give me suggestions on to live or die with this thing. I’m > still reeling. Thanks.
Response:
Lyle, Add me to that list of pals. I, too, was reeling when I was diagnosed about 9 years ago. There’s lots of misinformation out there, but with forums such as this, you will get good information too — plus a lot of support. I got a lot of help from the groups that preceded the Scleroderma Foundation, so be sure to give them a call and become a member (1-800-722-HOPE). Also check their website at www.scleroderma.org. Remember that there are various types of scleroderma, and lots of variation even within those types (localized, limited/CREST and diffuse). Right now you’re thinking about dying from scleroderma, but with time — and good support — you’ll concentrate on living WITH scleroderma. Feel free to e-mail me.
Response:
- Hide quoted text — Show quoted text -On Sun, 21 Mar 1999 18:07:17 GMT, Susan <"<susanel"@home.com>> wrote: >Hi Lyle: You are in the right place for support, we all are dealing >with this disease on a daily basis and understand your fear. > Someone to talk to is really good, so keep talking. > I have had Scleroderma for 25+ years and am still enjoying my life >(except for occasional bad days). > If you want to write to me my email address is susa…@home.com. Susan >Lyle wrote: >> Just diagnosed with SD. Taking 30mg Prednisone per day for 2 months and >> Imuran 100mg for one month. Have Raynaud’s in hands. Swelling in hands >> and feet. Some esophogus problems but not bad yet. Sores on fingers >> but note exactly ulcers. Just red and sore or sides of nails. Lung >> involvment but it seems to be improving. Anybody similarly conditioned >> who might give me suggestions on to live or die with this thing. I’m >> still reeling. Thanks.
Add me to the list of people you can count on as a friend. My email is alle…@tiac.net Bob
Response:
Hi Lyle: Well one thing you don’t want to do is die. Stick around a while and join the rest of us on line. Sometimes we have helpful hints and just a thing or two to make you feel good. Try us. One things this group is is supportive…..Gigi <<Anybody similarly conditioned who might give me suggestions on to live or die with this thing. I’m still reeling. Thanks.>>
Response:
Just diagnosed with SD. Taking 30mg Prednisone per day for 2 months and Imuran 100mg for one month. Have Raynaud’s in hands. Swelling in hands and feet. Some esophogus problems but not bad yet. Sores on fingers but note exactly ulcers. Just red and sore or sides of nails. Lung involvment but it seems to be improving. Anybody similarly conditioned who might give me suggestions on to live or die with this thing. I’m still reeling. Thanks.
Response:
Lyle, Scleroderma is very scary when we are first diagnosed and this disease can leave us frightened, confused, or embittered. The more we can educate ourselves about this disease and with the emotional support from online and local support groups as well as their educational support, we are in a better place to adjust to our situation. This makes us better equipped to work hand-in-hand with our health-care providers and assume an active role in our treatment plan. Being diagnosed with scleroderma is not a death sentence. Many of us are living long ful-filling lives with this disease. We need to keep a positive attitude and take each day a step at a time. Our quality of life may change, but the alternative is worse. Learn as much as you can and don’t be afraid to ask questions. While there is no cure as yet, we do have a lot of answers available on living with scleroderma. Dee Dee Hunt (DHunt75…@aol.com) President The Scleroderma Society of Sacramento The Scleroderma Society online Living with Hope ://www.jps.net/suebee/dd/home.htm
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