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Archive for the ‘In Motion’ Category

Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

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Or “Mitochondrio,” according to Jonah’s “Latin.”

I came across this video a while back. It explains a little more about how the mitochondria work and how a single step in the energy-making process can cause the entire production to fail. I hope it’s able to help the non-biology-oriented mind have a better understanding of what “Mitochondrial Encephalomyopathy due to a Complex I Deficiency” means in terms of how my cells function, or rather, don’t function.

Also, I want to encourage anyone and everyone to ask questions. About the cellular process, about my particular deficiencies, about my symptoms, about my diagnosis and the diagnostic process. No question is too invasive. This blog is not just an outlet for me. And it’s not just a means of communicating to all my friends and family. This blog also exists to educate and help raise awareness about Mitochondrial Disease. If you’re still confused, then I’m not doing my job!

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