Saturday, May 21, 2011

A reminder from me to me

This has honestly been one of the hardest weeks of my life. My condition has plummeted to depths that I feared. I prayed it would never happen. But it has. Being abused while completely paralyzed in the ER a week ago was a traumatic experience, as if being completely paralyzed, helpless, and at the mercy of strangers wasn't bad enough. I've gone through a flood of emotions, from rage to despair to just plain numb.

It happened again last night, and I chose to stay home and ride it out. I sent a message to my aunt as I felt the attack coming on. She came over and fed me potassium at my bedside. I binged on potassium...somewhere in the neighborhood of 215 MEQ in a 12 hour period, to try to ward off the paralysis. My heart rate was low and my breathing and swallowing labored throughout the night, but I decided that I would rather die than go to the ER again. And I meant it.

I've been drinking potassium all day today, and I am still partially paralyzed. I am on a walker when I get out of bed, but I've only been able to get up and walk once today. It took everything I had to make it through the house to the kitchen and back, and I had to take potassium pills in addition to the liquid to try to ward off another full-blown attack. As I sit here and type, I can still barely move my face, and it still hurts to breathe.

My condition has spiraled out of control to the point of helplessness. I sit here, lay here, merely exist here...and wait. Wait in a state of physical and emotional numbness.

So my recent news interview airing this week was good timing.

It's surreal to sit here and watch myself on television. To hear the optimism in my own voice. To be reminded, by me, that hope is everything, and that I still have it.

There is no doubt in my mind that finding the Hypokalemic Periodic Paralysis Network on Facebook has saved my life. I have learned more about my condition in 2 years than I learned in the 20 years that I suffered prior. Understanding how this disease works and the things that I can do to manage it has been absolutely vital to my survival since my quick progression. The trigger that I am currently living with, acidosis, is out of my control, but the countless other triggers that could be present...that HAVE been present in the past...are under control because I now know what they are and what to do about them. This information, thanks to Facebook, has changed my life. I needed the reminder. Desperately.

God knows I need His strength to carry on. And this week, it was in the form of a perfectly timed word of encouragement...from me, to me. "I have hope again, you know"...even when it seems like hope is gone.