Monday, May 11, 2009

Last hopes.

So I rant about friends and loved ones having to understand that making plans with me is always iffy. There is always a chance that I will cancel at the last minute because it's a bad day. And yet, here I am beating myself up because I missed 2 days posting. I want everyone else to understand that bad days happen, but I refuse to understand it myself. I spend way too much time fighting against my limitations.

"So Judy, you had bad days, you couldn't post, get over it!!" Okay, I'm done now. Still feeling bad, but I'm working on it.

Onto today's topic. I was reading posts (and answering some) in some of the on-line support groups today, and I saw one where the writer said "I'm always depressed after doctor's appointments, and I don't know why."

I get the same way, but I do know why. I tend to put too much expectation on the next Dr. visit. I get to thinking "maybe he'll have something new for me" "maybe there is a new medication" "maybe he'll agree to do the pain pump surgery (a post for another day)." And I go see the doctor and he has nothing new for me, and says "bye, come back in 3 months." And then I lose it in the car on the way home. I'm usually depressed for a couple of days, and that's when the pain is the worst. It really hits me hard. I so desperately want there to be something new; I put my whole self into that hope, and when it isn't there, I'm crushed. Even though, in my head, I know there won't be anything new, I still take it really hard when there isn't.

I tell myself every time not to get my hopes up, but every time, I do. Why? I think maybe it's just the way it is. It's what people always tell me too: when I say that I have an incurable disease, people always say "you never know what the future holds. There may be a cure someday." People say that because "incurable" is too devastating, it's such a big and overwhelming word. But people say it because they believe it too. We all need hope.

I have to live for the hope that tomorrow may see a cure, or at least a treatment. I tell myself not to get my hopes up, but I'm not sure that that's reasonable. I think I live with my hopes up. I have to. If I lose hope, I lose everything. But it does set me up for a fall every time I see a doctor and that new treatment doesn't exist yet. Which is worse, being disappointed every now and then, but living with hope, or giving up the hope of help? I think I can only stay sane and in control if I continue to hope.

Also, I see so much progress in scientific fields: stem cell research, spinal cord research, nanite technology, heck, we have mapped the human genome. Why can't we solve the problem of pain? Unfortunately (for me anyway), nerve pain is the hardest to treat. The nervous system is so complex; it seems we know more about the surface of the moon than about the workings of the nervous system.

You'd think that there would be money in the research. Pain is costly, there's money in its treatment, there must be money in its research. And yet, I go to the doctor, and there's nothing new to help me. Why?

Oh well, regardless, I continue to hope. I have to.

1 comment:

  1. You go girl!!!
    I'm so glad to have caught up with you again. :)