Archive for the ‘California’ 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.


Read Full Post »

“Enjoy life. This is not a dress rehearsal!” – Mark Timothy Allen

While saying goodbye to my uncle, he held me tight. Although he had just lost his husband (my uncle Mark), Jeff touched me by his words: “Since last Tuesday, I’ve been trying really hard to find the little blessings in life.”

I think that’s important. Sometimes, we get caught up in the pains – both small and large – in life. They’re probably more memorable. After all, how frequently do we overlook things like having dinner with a friend, hugging goodbye, or receiving an “I love you” from a loved one? Especially when they’re overshadowed by crummy bosses, viruses, and inadequate income. What if that was your last dinner, your last hug, your last “I love you”?

My uncle told us that one of his “little blessings” was having Keith and me out from Boston. And our little blessing was being able to be there for loved ones who were in pain. Before I was reminded of this blessing, it was overshadowed by loss, pain, and stress of travel. See? It’s easy for these blessings to be obscured.

So I dug deep and found some wonderful “little blessings” from the past week:


Read Full Post »