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 ‘Friends’ Category
United in Hope
Posted in Boston, Friends, mito, Raising Awareness on 31 August 2010| Leave a Comment »
Pupcakes for a True Blue Pal
Posted in At the Doctor's, Birthdays, Dogs, Friends, True on 30 August 2010| Leave a Comment »
I have a dog. Her name is True. We call her “Trooper,” “Boo boo,” “Truby,” and “True Blue”. Because she is. She’s a True-blue friend. She is a service dog and helps me with everyday tasks.
Yesterday was True’s 6th birthday. That makes her middle-aged in dog years. We are so blessed to have True in our lives so we celebrate doggie birthdays just like we do human birthdays.
For this birthday, I made cupcakes on Saturday night. They were dairy-free, egg-free, chocolate-free, and baked with agave nectar in place of processed sugar (because processed sugar is bad for doggie tummies). And because of this, they were doggie-edible.
We got up early Sunday morning to run errands (something True loves). First on our list was Petsmart. Petsmart is one of the few places we go that we let True be “just a dog.” We leave her service dog jacket in the car and take off her gentle leader. She’s allowed to sniff and greet other dogs and get pets and cookies from people she meets. She loves it. We picked up some new nail clippers for her (our old ones got lost in the move) and some specialty frosted cookies and bones for her birthday. She was in heaven.
Next, we were off to Costco. [For my pharmaceutical-dependent friends out there, Costco Pharmacy ROCKS. They charge at-cost so if your insurance doesn’t completely cover something (for me, Zofran), it’s not that expensive!] Costco was a short trip aimed at picking up a few staples in our home.
Then we were off to Beast’s house. Beast is True’s boyfriend. He’s a 10-month-old, yellow lab service dog. They are best friends:
Beast and True, ready for work
They are hilarious together. They chew on opposite sides of the same bone, swim together, cuddle, and work together. Beast even brings True toys and forces them in her mouth. They are certainly good pals. So was there any better way to celebrate her birthday than by letting her celebrate with her favorite four-legged pal?
After letting True and Beast enjoy the evening together, we headed home so that True could enjoy her allergen-free, puppy-safe cupcakes.
Thank you, True, for being there for me when I need you! Here’s to many more happy birthdays in the future!
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Today, I had my pre-op consult with the surgical team for my muscle biopsy. It seems like such an ordeal for such a small operation. I found out that the procedure is only done with general anesthesia so even after begging for local it was a no-go. But we were able to set a date for the soonest available day: September 16th. We’re looking forward to getting some more firm answers at this point. Wish us luck!
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.
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But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
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