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Archive for the ‘Sharing is caring’ Category

A Journey with Hope

Posted in Family, Hope Rising, Life, Raising Awareness, Sharing is caring on 17 November 2010| 1 Comment »

The last 3 months I’ve been busy. Really busy. I’ve logged over 200 hours expanding my knowledge of Photoshop (something with which I had virtually no experience prior to last May), relearning html/css/java, and taking in whatever I could about music and distribution to help my dear friend Stefani get her message heard. Because she’s amazing. Her music is inspiring. And I think everyone else should be given the chance to connect with her music as I have.

It may not be your “cup of tea,” so to speak, but you can’t deny what an amazing journey she’s led. Like me, she has mitochondrial disease. She not only deals with her own disease with dignity, but she also cares for her two young children who have their fair share of medical difficulties. And yet despite this, she reaches out to others in need, whether through her positions with IDF and UMDF or by sharing her lunch to the homeless man on the pike off-ramp. Now, she’s sharing her hope through this CD which speaks of her 5-year journey. I feel honored to call her “family.”

Her debut CD, Hope Rising: The Journey, is now available for pre-order through her website and will be delivered sometime after her release date of November 19th. While you’re there, you can take a gander at some of the help I’ve been lucky to share (the CD cover and insert, her Release Party announcement, and the website itself). And if you encounter any issues with the site, please let me know. It’s still a learning experience and I love getting feedback!

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Let’s talk about Butts: Digestive Tract Paralysis

Posted in Friends, Guest stars, Kiddos, mito, Raising Awareness, Sharing is caring, Tummy troubles on 27 August 2010| 3 Comments »

August 22-29 is Digestive Tract Paralysis (DTP) Awareness Week.

Because I suffer from DTP, I thought I’d share a little about DTP, my story, and the stories of some friends.

I have what’s called “gastroparesis.” That’s gastro– (meaning stomach) and –paresis (meaning partial paralysis). I also have intestinal dysmotility which has resulted in many episodes of intestinal psuedo-obstruction. And that’s intestinal (meaning relating to the small intestines and colon), pseudo- (meaning false), and obstruction (a blockage). Both issues are common with many types of mito.

As a friend with Crohn’s disease has said about GI-tract disorders:

“What are those?” you ask. Butt diseases. Nobody talks about them because butts are embarrassing.

But these are real and serious conditions because the GI (gastrointestinal) system processes your food (which contributes to how well your entire body functions), GI disorders are very serious. They are something that people should talk about because without vital nutrition, your body deteriorates rapidly. There are, however, some medical “solutions” to poor nutrition. Although doctors initially try treatment with medication and diet, they may eventually resort to using TPN (total parenteral nutrition), which is essentially IV nutrition, and/or a GJ (Gastrojejunal) tube, a tube that directly feeds into the small bowel, bypassing the stomach.

(more…)

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