Posted 28 September 2008 - 05:23 PM
Posted 28 September 2008 - 08:18 PM
Systemic Sclerosis: Diffuse Scleroderma
Emotional Adjustment and Scleroderma
Try not to get too overwhelmed with it all. There are many forum members in similar situations who live full, busy lives. Please feel free to ask any questions that arise and join in posting on any of the threads that interest you.
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 28 September 2008 - 10:22 PM
Posted 29 September 2008 - 05:07 AM
Welcome to the Sclero Forums! Really glad you've joined us, but I'm sure sorry it's due to your recent diagnosis. You've received some great advice so far, so I will just add a big welcome!
Posted 29 September 2008 - 05:40 AM
So, learn all you can. Take what works for you. And, by all means, run that marathon in February.
Posted 29 September 2008 - 06:03 AM
I was just dxed with Sclero about a week ago. That is great you are training for a marathon. I exercise four to five times a week. It helps me from getting so stiff. I too have systemic scleroderma, but I am trying to learn everything about it to. I am 38 years old & have three boys, 19,17 & 15. Welcome.
Posted 29 September 2008 - 11:36 AM
Welcome to the ISN forum, you are in the right place to get expert info and first hand advice.
I have diffuse systemic scleroderma, diagnosed just over a year ago and would have loved to have had access to this site then!
We look forward to getting to know you better when you feel ready.
Finally, You mentioned a marathon, obviously I know nothing about it but maybe you could raise moneyf or ISN? Just a thought.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 29 September 2008 - 01:26 PM
Although I've had Scleroderma (Limited/CREST) for a very long time, I'm just getting diagnosed recently. I only wish I had known about this site earlier, but I figure, better late than never! There is a wonderful bunch of people here who will listen, respond and support you whenever you need it.
And as many others have already said, GO RUN THAT MARATHON!!!
PS ~ Not to confuse you so early on, but there are two Nina's, I'm from Delaware, so I sign with (DE)
Posted 30 September 2008 - 03:54 AM
Sorry to hear of your recent diagnosis. I am 49 now and was diagnosed with systemic scleroderma 10 years ago when my two daughters were 10 and 12 years old. I would encourage you to read our stories and links. This is the place with the most updated research, information and great support from fantastic people. Whenever you have questions or need to vent we'll be here for you. Take each day one day at a time. I agree with everyone to go ahead and train every day and run your marathon in February. We'll be rooting for you!
Posted 30 September 2008 - 05:58 AM
Wow, I'm inspired just reading all of the replies you've gotten! As you can see there's lots of hope. Sure there will be challenges, but scleroderma doesn't have to ruin or even change your life. You may have to make adjustments, but you are going in healthy. My advice would be to learn all you can and be armed with information. Ask lots of questions and stay in shape, that's your best defense. Oh and eat well. I too have three children and although they were teenagers when I was dignosed I had had sclero for ten years and didn't know what it was. During that time I was a full time teacher, like you and was a Brownie leader and cub scout leader and did all the things a mother with three little kids does. So.....life goes on. You are already a fighter and will do well for yourself and your children. Welcome to an awesome intelligent informed bunch of people.
One excellent starter book my doctor gave me...The Scleroderma Book, a guide for patients and families by Maureen Mayes.
Posted 30 September 2008 - 09:54 AM
Posted 30 September 2008 - 01:10 PM
Posted 30 September 2008 - 05:27 PM
I am so sorry you have scleroderma. Every one here will certainly support you and help you through this. They have given you good advise already and can't think of anything to add.
Posted 01 October 2008 - 02:39 AM
One other thing is that we do have a chat room, one is on Wednesday 7.00 pm UK time & I think the other is on Sunday (American time), someone else will be able to tel you I'm sure.