In 3 weeks, my good friend, Stefani Bush, and I will be joining mito families from all over New England for the MitoAction 5K and Family Fun Walk. While we are not actively seeking donations this time around (we just asked for donations for the UMDF walk we planned in May), we do want to invite you to join our team in an act of solidarity. If you’re not in the area (or are but busy that day), we encourage you to join as a “virtual walker” to show your support and help us raise awareness of this horrible disease. To join, simply click on our link and go to “Join Team” on the left-hand side of the site (right above our team members). From there, you can register to walk ($20) or register as a “virtual walker” (FREE).
Archive for the ‘mito’ Category
United in Hope
Posted in Boston, Friends, mito, Raising Awareness on 31 August 2010| Leave a Comment »
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.
She is “Sasha Fierce”
Posted in Boston, Hospital life, Kiddos, mito on 26 August 2010| 1 Comment »
Today, Keith and I went in to Children’s Hospital Boston to visit some friends. The main purpose of our visit was to watch over Sasha while her parents took her brother to an appointment with the metabolism doctor in another wing of the hospital. As you may or may not recall, I mentioned that Sasha was admitted to CHB on Tuesday. She was having bowel issues as well as some bothersome neurological impairments. The staff in the Emergency Department exhausted their options so she was admitted for some pretty big treatments for such a little girl. Keith went in yesterday night to visit and bring Stefani and Ralph some supplies and came back telling of the little girl who was not the Sasha we know and love. As I wrote in my last post, she is a spirited, joyful, engaging, empowering, strong, and inspiring 5-year-old. I admire her fierceness. Last night, however, she was not fierce; she was resigned.
When Keith and I showed up at 10am, Sasha was still asleep. This is particularly odd for Sasha as she rarely sleeps past 7am. We sneaked in and sat down nearby her bed with True. Pretty soon, the metabolism team came around to check on her so I quietly roused her. When she saw us, she perked up immediately and sat up with a grin. When she saw True, that grin turned into a full-on smile. She giggled as True hopped up onto her bed and gave her kisses. The metabolism team was pleased that she was so responsive as she apparently hadn’t been in the previous days. She was able to hop down and perform the tasks the team asked of her with very little prodding. This pleased the metabolism team further. She showed them some of True’s tricks and said “thank you” as they left.
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The woods are lovely, dark, and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
-Robert Frost Archives
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