Shelley Ensz

ISN YouTube Videos about scleroderma!

27 posts in this topic

All I can say is Wow! I honestly didn't realize the impact my video could have but am glad I made one! By putting a face on scleroderma and showing the full nature of its affects, I hope finally we'll get the attention we need and scleroderma won't be something people never heard of.

 

Debonair Susie,

 

A week in Hawaii sounds fantabulous! Let's all gooo! Whohooo.

 

MaryfanPhilly,

 

I feel right at home here because I know what I have and how I look is not unusual for us. Please do pass my video on to everyone. The more people who see it, the better for all of us!

 

Lucy,

 

You are never alone and please remember that. If I was able to pass that realization on to you then I am truly happy for doing that. It's interesting how we all bear some resemblance to each other in some way and because of scleroderma we have that connection. We are all in this together. You can always message me anytime you want. :D

 

Barefut,

 

Thanks for the kudos! You and Barbara do an awesome job with your blogs. I love starting my day reading your blog and drinking my coffee. For now I'm off to new ventures and projects. Who knows what next I'll pull out of my sleeve?

 

Lots of Hugs,

Razz


Live well, Laugh often, Love much

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Razz

Thank you for doing the video it was excellent bringing this condition more into the open. Whenever I mention it no one has a clue & that includes many of the nurses & doctors I've come across in the various departments at my local hospital.

 

So thanks again.

 

Jensue

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Jensue,

 

You are most welcomed and you're absolutely right. It's bad enough to have some unknown disease with no cure, but to have something no one's even heard of makes for a double-edged sword. At my doctor's appointment with social security the doctor had never seen someone with my condition.

 

Last year my rheumatologist asked if I would volunteer to be part of their annual medical school session where med. students would participate in diagnosing various rheumatory illnesses. It was a 3-hour session where about 10 groups of students, each lead by a rheumatologist, came into my examining room to guess what I had. I didn't mind since I felt they would learn first hand what scleroderma looked like. If they ask me to participate again this Feb. I most likely will.

 

Hugs,

Razz


Live well, Laugh often, Love much

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Razz, I just watched the video and you did a great job!! Thanks for all you do. Sam


Sam

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Sam,

 

Thanks, I never videotaped myself before but I did learn something new. And what better way to get the message out.

 

Razz


Live well, Laugh often, Love much

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Razz,

 

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,

 

Judy


A happy heart is good medicine.

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Hi Judy,

 

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!

 

Hugs,

Razz

 

:)


Live well, Laugh often, Love much

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I thought the video was brilliant -- you are a star, my friend and so brave!

 

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

 

Barbara xxx

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Barbara,

 

You're a star in my book and we could use a standup comic! Maybe we could cure scleroderma with laughter. :lol: We'd laugh so hard scleroderma would pack its bags and leave town!

 

Thanks Barbara

(you're my hero).

 

Hugs,

Razz


Live well, Laugh often, Love much

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Razz,

 

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.

 

Mando.

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Mando,

 

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.

 

Hugs,

Razz


Live well, Laugh often, Love much

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