All I can think of to compare my life to is the flu. Imagine you are at the worst day of having a bout with true flu. Your body aches, you have a fever, you’re queasy, dizzy and weak, your head hurts like crazy, etc. That’s much like I feel every day…but add in cramps, muscle spasms, tremors, swollen joints and a few more fun things.

Now with really bad flu, try driving, thinking, doing household chores and living like that every single day for the rest of your life. It’s not easy. Sometimes you wake up and think you’re getting better, but then it all comes back by late afternoon. Each time you make plans, you never know how you are going to feel. Sometimes you throw caution to the wind, go to a party or event, but then can barely move the next three days.

Probably you cannot truly imagine what that’s like “forever”. It’s soooooo frustrating!!! You figure you just need to try harder. But…the more you push yourself, the worse you get.

The whole thing becomes a special sort of hell. You’re trapped. The only way out is prednisone or IVIg. Those treatments also cause problems, but after months of debilitating hell, ANYTHING sounds better. Imagine if IVIg improved your life by leaps and bounds, but suddenly you were denied that treatment.

Oh….you might get an inkling of what it’s like, but I never would have understood until it happened to me.

I am still sick and weak and queasy and sore…but now I can move through the world again and interact with it. I can see more than my apartment and the backside of the building next door. If I want to get something for dinner, I don’t have to dream about what food I want to buy in a week or two, next time I have a good day….I can just GO get it! The freedom is intoxicating.


I also have to admit to being very scared. My cancer operation is June 4th. How sore and debilitated am I going to get? Will I need chemo and radiation? Will I be too weak to drive my power chair? Will I be too sore to sit up and buckle in?

I feel pretty beat up and bleary eyed from the last two days of wheeling through life….but I want to keep going!!!!

Sigh…now that I have tasted this freedom it will be darn hard if I have to give it up.