Friday, September 23, 2011

Mito Awareness

This week is mitochondrial disease awareness week.  I didn't realize until yesterday.  It's almost over and I didn't take the time to do anything to raise awareness.  I looked at the UMDF's website.  They have lots of ideas to raise awareness, none of which appeal to me--probably because they are all designed to promote awareness, to educate.  And I think "I do that anyways."  But mostly, I think "I don't want to have to do these things."

Because they sound like they would require a lot of energy.  And energy is something that I simply don't have enough of.

I have mitochondrial disease.

I've always liked mitochondria--they're my favorite organelles.  They're the parts of the cell that make energy.  Mitochondrial dysfunction results in cells not being able to produce enough energy, which eventually leads to cell death.  This can cause organ damage, causing disease in multiple organ systems.  So far, I am affected in my kidneys, nervous system, GI tract, and brain.

There is no cure for mitochondrial disease.

There are few treatments available.

I wanted to write something for mito awareness.  I wanted to write something poignant, to inspire you to educate yourself, to reach out to you and try and help you understand a little bit of what it's like to have mitochondrial disease.   But I'm not terribly eloquent at the moment due to the very strong pain medications because of my kidney stone.

I've devoted much of this week trying to figure out what kind of anti-seizure drug I can take that will allow me to remain alert and awake so I can go to class.  I spent all morning throwing up because my stomach isn't working.  I’m thinking about medication time-frames because I have a new drug that needs  a 2 hour window between taking it and the 12 other medications I have to take today.

I want to talk to you about mitochondrial disease.  I want to educate you.  I want to open up and show you my heartbreak over my broken body.

I want to, but I can’t.

I just don’t have the energy.