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Hello James, I am coming in near the end here, but I just wanted to welcome you as well. Sometimes we feel alone with this desease, like no one understands. I have found so much warmth and love here on this site, it's amazing. Keep posting and try to keep positive, we are all here for you.


Jackie S.

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again, thank you all......


today I did it!!!!!


i forced myself and my depression( since it won't go away, I invited it along!) to for a walk together in Prospect Park Brooklyn.......


15 minutes, beautiful and somewhat out of breath.........but I am glad I got out the bedroom that is slowly turning into a luxurious prison cell....


Did some healthy shopping - fruit and fish and was glad to get home though back on the oxygen.......


But a step in the right direction I believe......

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I'm hugely excited for you! What a major step in the right direction!!


Please let us know about your next walking excursion, which I imagine might be in another day or two?


There is hardly anything more uplifting and refreshing than fresh air and a pleasant stroll, is there? And, is there any reason you can't take your oxygen with you?


My husband wears his 24/7 (per doctor's orders) -- so you would hardly ever be able to catch him without it, and I love him all the more for taking such great care of his health. Oxygen is even more important during exercise, so please make sure your sats aren't falling too low when you are out.


May you have some increased moments of happiness, each and every day. We work very hard at increasing our happiness quotient all the time in our household, figuring that all of our idle time is up for grabs to be converted from blahs or fatigue into joy and pleasure, even if it is savoring a crisp apple or listening to a lovely symphony, writing a thank you note, doing some artwork, indulging a hobby, or escaping into a good book.


I know people think it is odd and counterintuitive, but I've found that welcoming everything (even pain, fatigue or depression) and then facing it head-on -- such as you inviting your depression to take a walk with you, which was a wonderful idea! -- bypasses some sort of block in the brain that helps us cope with the situation better.


So I no longer fight fatigue. Instead, I figure out how I can get the maximum enjoyment along with it! If I can't hardly move, well fine, then I can still listen to music or savor the silence. Or do my nails. Or take a nap. Or just sit on the patio. When I was bedridden for months on end, I made a list of 100 things I could do in bed. Not a single one relied on television, either, as I found through trial and error that tv increases my overall fatigue, instead of refreshing me as other activities do.


Oh, here I am writing a novel. All I really wanted to say is mucho kudos to you!

May you gradually make your own list of ways to increase your happiness quotient, while gladly welcoming depression (or fatigue or pain or whatever) to explore the new paths along with you.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Oh Shelley, always love your "novels" they are full of warmth and wisdom.


Hey James, I applaud you!!! That was a HUGE step today. You have inspired me, I'm going to get up after typing this and prune a few roses.


Thank you, and much love to you!

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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thanx guys&gals.....


this wearing the oxygen round the clock thing is the question I will be putting to the rhemy on the 8th october - if he says yes - so be it.....


i dont respond to all the advice - i couldn't possibly find the time, but I am grateful for everyone who helps me feel worthwhile :)

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