Thursday, August 4, 2011


It's not always good.

My condition has greatly progressed as a result of the April and May attacks. I continue to have paralysis, and my body feels so much more unstable than it used to...I can't even explain how unstable. There are days when I can't sit up for more than a few minutes at a time. I can't complete many basic every-day tasks anymore. I now have a weakened esophagus and I cannot always swallow or speak. My voice is gone at the moment, as my vocal cords are partially paralyzed as a result of the constant fluctuation of my potassium levels.

My life is so different now. Hard to describe, but the word prison comes to mind. I am bound by this disease, and I am pissed off. That's just the ugly truth. I hate my life but I'm fighting for it as best as I know how. Sometimes, I feel like I'm fighting alone, but I know I'm not.

On behalf of all who suffer with Hypokalemic Periodic Paralysis, I started the awareness album on Facebook. People can turn up their noses all they want. I am real, I am open, and right now, I am pissed off. And those who truly love me and care about my well-being are supporting my efforts and keeping me going.

Knowing that I would very likely not be in this condition had I been listened to and taken seriously over the years is down right despairing. This battle began when I was 12 years old. There are so many people with this condition who were diagnosed and treated in their youth, and they lead fair, even good and productive lives to this day. Instead, I've been ignored, shunned, mocked, falsely accused, mistreated...and now, I'm like this. I saw it coming, I made it known, and I was pushed to the side.

Damn right I'm mad.

I'm in battle for a life that has barely begun. It's not even a life that I like, but I am trying nonetheless. I grew up a timid, submissive, non-aggressive doormat, and now I see clearly where that has brought me today. It is disheartening. There is nothing I can do to change my past, but I will fight with all that is within me for the future.

I have to believe in purpose, because I believe in God. He still holds the blueprint in His hand. I don't see it and I don't understand it, but I believe in it. I am here for a reason whether it seems that way or not. I pray that my purpose will be fulfilled, whatever in the world that means.

May He be my strength and my help in this time of progression.