I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Monday, January 25, 2010

The fight is on

Seems like it's been a while since I've blogged. I can say for sure that this has been one of the longest months of my life. I can't believe it's still January...feels like it should be at least mid February by now. I've been wanting to blog, but haven't been able to find the words. Or at the very least, the words I did have weren't worth repeating. That's more like it.

I'm at a very low point in life. So sick and tired and weak with this disease that I can't sit up for more than 5 or 6 hours at a time...yet I can't sleep either. I have officially crashed and burned. I knew it was coming but I couldn't do a thing about it. I'm physically and emotionally exhausted. Miserable. Lonely. Sick. Depressed. Angry. Weak. Tired. Wash, rinse, repeat...

I don't know what else to say about it. I just know that I don't want to be like this. This is not living. This is merely existing. And it's unacceptable.

I'm reading and researching and doing what I can to deal with my condition(s). I have two doc appointments this week - one is a surgery follow-up and the other will be with the internist to discuss more aggressive treatment for the Periodic Paralysis. She clearly doesn't understand the condition so I will be bombarding her with pages of info this time around. I realize that I'm a lowlife with no insurance (God forbid) but I'm sick and tired of the ignorance and carelessness of the medical community. If I have to find my voice and rant and rave to make these doctors care, so be it.

School is in session, but I've only attended two days so far and I barely made it through those. I knew that I was crashing and that I wouldn't be able to make it through the school day anymore, but my teacher encouraged me to try, so I did. Unfortunately, I had to drop my Drawing II class today. I'm going to try to survive Design II, but I don't know how well that's going to go. My teacher told me not to worry so much about it but that's easier said than done. I'm so thankful that he's working with me and I wish I could be a better student. I've had to back out of the art guild (which was also very important to me) in addition to dropping Drawing II. These people are having to deal with me at my worst right now, and I can't put the disappointment into words. I feel useless and defeated.

It seems like no matter how hard I try, my goals are simply not within my reach. I don't understand why it's so unreasonable when it all boils down to is trying to better myself and become independent. But once again, it feels like a pipe dream...something that will ultimately never happen. I hope I'm wrong. I do know that I am going to continue at JC for another year of academics as long as the financial aid is there, and hopefully I'll be able to jump back into Drawing II at that time as well. But after that, I don't have any idea what I am going to do. Physically speaking, I've become so limited that my options are flying out the window...I don't know if I have any left, honestly. But I can't give up.

I can't give up.

I can't.

I have to keep telling myself that every day.

Proverbs 29:18 says "Where there is no vision, people perish".

To stop trying is to start dying. To give up is to die.

I can't give up.

I won't give up.

But I'm hanging on for dear life, by a thread, and losing strength. I need your prayers. I cannot do this alone.

At times it is very difficult, but I'm doing my best to keep life in perspective. I am grateful in the midst of all of this, even if it's not showing right now.

Monday, January 4, 2010


Sitting up for a few minutes. Still very weak and in a lot of pain, but the meds have kicked in and I haven't been sick once (major shocker...hooray). Everyone at USA Children's and Women's Hospital was super nice. They took all of my risks into sincere consideration, and this is the best I've ever done post-surgery. They said that the surgery went much more smoothly than they expected. I'm so relieved and so, so thankful for everyone's thoughts and prayers.