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Archive for the ‘Hope’ Category

Part of the Cure

Posted in Boston, Canobie, Friends, Hope, Hospital life, Kiddos, Legislation, mito, Raising Awareness, Six Flags, Tutoring on 24 September 2010| 2 Comments »

Sometimes when dealing with something as ugly as mitochondrial disease, it can be difficult to keep the focus on the good and the cure, rather than the sick and the disease. For this reason, I feel incredibly lucky and blessed to have such an amazing support network of friends and family. Even through the bad, they are able to keep a smile on my face and laughter in my belly. They are able to remind me not to focus on the disease, but rather they push me to fight for the cure, to become part of the cure.

This week is Mitochondrial Disease Awareness Week. But rather than tell you more about the disease – I think I’ve do a pretty good job for the mito-illiterate – I want to share with you all the good and amazing things I am blessed to have in my life. Because living with mito is not just about living with the disease, it’s about living.

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Show some muscle

Posted in At the Doctor's, Boston, Friends, Hope, Hospital life, Keith, mito on 15 September 2010| 2 Comments »

Tomorrow, Keith takes me in to Boston ultra-early for my surgery. My dear friend Stefani will be joining us to provide moral support and advocate for us should something happen. I must emphasize that nothing should happen. This is a routine procedure being performed in one of the world’s best hospitals (MGH). However, they are requiring me to undergo general anesthesia. I don’t always handle general anesthesia well. In fact, I don’t handle general well. The most recent time, for instance, I stopped breathing for a short time following anesthesia. And recovery is long and arduous.

But, apparently, there’s no way around it. We requested numerous times to perform the surgery under local anesthesia, but the surgeon insisted that it had to be done under general. We’re not sure if this is because I’m labeled a “high risk” case and they decided to perform the surgery in the Same-Day Surgery OR rather in the outpatient clinic like it usually is.

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When I grow up

Posted in Boston, Energy for Life, Friends, Gift of life, Hope, Hospital life, Immune Deficiency, Keith, Legislation, mito, Monthly Dose of Hope, Tutoring, umdf, Vampires on 9 August 2010| 2 Comments »

While tutoring last week, we took a trip to the Museum of Science. While there, we spent quite a bit of time in the Theater of Electricity. T seemed so enthusiastic about the technology that I joked she could be an engineer when she grew up.
“No. I want to be something else.”
“Well, what do you want to do when you grow up?”
“I want to cure mitochondrial disease.”

I do, too.

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