ISN YouTube Videos about scleroderma!
Posted 24 October 2008 - 04:00 AM
Thanks, I never videotaped myself before but I did learn something new. And what better way to get the message out.
Posted 24 October 2008 - 05:10 PM
What a great and heroic thing you have done. I am overwhelmed by your compassion and the passion you have in sharing your life with us and now the world. Thank you so much for being you. Thank you for helping me walk through many of the things that are happening to my own body.
Shelley, thank you for being available and to this forum you have dedicated so much to. Thanks for supplying articles of help and information so desperately needed.
With gentle thoughts,
Posted 25 October 2008 - 03:57 AM
I am glad to do this for myself and everyone. Scleroderma can be a lonely and isolating disease, but doing something about it helps me feel proactive and positive! You are so very welcomed!
Posted 26 October 2008 - 10:33 PM
Shelley mentioned it to me but I think I'm safer writing blogs. I said that I would probably sound like a stand up comic because I just don't take myself seriously at all. Also my technical attributes amount to very little, I can't even find the plug in for the lead. My computer doesn't have a hole for my lead to go in, so I think you're all spared my frightful mush on this on this one!
Three cheers for Raz!
Well done, my friend. Hugs to all
Posted 27 October 2008 - 02:28 AM
You're a star in my book and we could use a standup comic! Maybe we could cure scleroderma with laughter. We'd laugh so hard scleroderma would pack its bags and leave town!
(you're my hero).
Posted 27 October 2008 - 11:48 AM
I applaud your ability to speak so eloquently. Speaking is what I do everyday in my job as a teacher. It is getting harder and harder to pronounce words correctly. Just today I was trying to say something, and I was really having a hard time getting my lips to move correctly to make it sound right. My students say I have a funny accent. I don't really have much of a funny accent for here in Wisconsin, but I am having trouble saying things I used to say without thinking. I find myself pursing my lips and closing my mouth between things I say, much like you did, to remoisten my mouth.
I'm not willing to share my problems at work yet, so I wouldn't be making a video. I am glad that you were willing to share so others can find out what it is like. I'm a little afraid of saying anything to my colleagues and students.
Posted 27 October 2008 - 04:07 PM
Thank you for the compliment! I didn't realize how often I swallow in between talking until I watched the video. I had to gather my thoughts, press record and begin speaking without stopping. I admire teachers and lecturers for the work you do every day because it is not an easy job.
It took me many years before I felt comfortable enough to share my experience. Now, I'm a veteran of scleroderma and I wear it like an old shoe. I did the same thing when I was still working, I didn't tell everyone what I had (only my two partners and my lieutenant). I wanted to keep it private.