Sunday, July 12, 2009

Oh My

I've spent the better portion of the week working toward understanding the information coming from Atlanta. Well, let's just say that it's like reading Ancient Greek...without a translation. Google is my friend. When we start talking oxidative phosphorylation, I get this lovely "deer in the headlights" look. Suffice it to say that there have been a large number of very late nights (when the house is quiet) of studying and reading and...well...crying. What a long week this has been.

The short answer is...there is no short answer. :) All I do really understand is that this is a progressive problem with no cure. There are supplements that are prescribed that slow the progression, so we're working with the insurance company to request that they cover them. Please pray for this because these supplements will be impossible for our budget to manage without help from our insurance company. (One of them is $180 per month and there is a nice long list of ingredients for the "Mito Cocktail.")

We're also needing to make an appointment at a mitochondria clinic...which of course is nowhere near Virginia. There are only a few in the country, so it's looking like Cleveland, Ohio; Houston, Texas; Boston, Massachusetts. Pittsburgh is an option, but it's not nearly as highly recommended as Boston and Cleveland and Houston. (We discounted Seattle and LA due to distance...isn't that a riot???)

As for the rest of our family's adventures...let's just say it isn't dull. I'm really ready to throw Plavix out the window...before I throw it AT someone. This drug is making me...unpleasant...and emotional...and exhausted. I'm so very done.

Will is symptomatic. And he is not sleeping well at all. Most nights he's still awake well after midnight...well after midnight. He tried carrying on a conversation with me at 2 this morning. Really, this was not one of his better ideas. :)

Btw, Will and I head to Toledo the last week of this month to meet with his cardiologist.

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