Thursday, December 3, 2009

I Was A Being a Zebra

I think it's high time I updated. I mean it this time. What was I doing between last August and now?

Having the hardest year of my life. Not the worst and it took me awhile to make the distinction, but definitely the hardest. My thesis and densely packed fall schedule collided with a rare genetic disorder that I'd had my entire life, unknowingly. No doctor could diagnose me, and because they were certain there was something wrong yet unable to pinpoint it, they blamed it on me so they could keep their respective egos intact.

So while my doctors picked on me incessantly, hospitalizing me sure they were going to find it THIS TIME I was always in trouble for missing class.

In the midst of this THESIS-THESIS-THESIS. I didn't know how to tell anyone that I was suffering from an undiagnosed medical problem and my doctors were giving me hell. I'd forgotten to make good enough friends. I tried to act the stoic, but on the inside I was falling to pieces...and getting sicker and sicker.

By April I was desperately ill, running a heart rate of over 200 which made standing and walking near impossible. My doctor hospitalized me, sure they'd get it THIS TIME.

Of course, many genetic diseases aren't going to show up on a blood test. You have to know what you are looking for...what you are looking at.

By July I had to move back in with my parents who took one look at me and shipped me to the Cleveland Clinic where they do medicine right (mostly.) They correctly diagnosed me with POTS.

What this means in short hand is that when I stand (or sit for that matter) the blood that should be circulating up to my brain pools in the lower half of my body instead, primarily in my abdominal cavity and my feet and legs.

My body noticed this happening and made my heart rate higher and higher to pump that blood where it should have been. So in time, my heart rate got ridiculously high and even so it wasn't enough. I had started passing out from lack of oxygen to my brain.

This means I did my last year of grad school with progressively less and less blood in my brain. When I think of it that way, I (almost) don't feel bad about my performance. Almost.

POTS is on a continuum from mild to severe. Mine tends toward the severe end, although not most severe. I am neither bedridden nor housebound but I probably will have to use a wheelchair if I want to work full time. I have to keep my trips alone to two hours including travel time. I need to be able to lie down (not just sit) if I start to get sick.

Since my POTS is secondary to my genetic syndrome I will probably struggle with it for the remainder of my life. Really I struggled with it from the time I was a little girl but like my doctors, I didn't realize what I was looking at.

Currently I am trying to wrangle my way into a part-time job. I managed to stay out of the hospital the whole month of November so I hope it's tenable? I won't know until I try and I do intend to try.

Next entry, I'll be more uplifting, promise. I want to talk about the anthology and fellow Cleveland poets who are included therein. I also want to talk about poetics, I hope in a non-pretentious fashion.

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