Sunday, June 7, 2009

Torture headache...and late-night thoughts

Hasn't let up all day. Medication barely touches it, but I have to try something. The inflatable traction helps a bit, but only while my head is lifted pretty severely, to the point that my jaw is tightly clenched. I had Gus do manual traction, and all of my pain went away. But that's very temporary, too. And as soon as he lets go, I feel like I am being crushed. At least I know that re-fusing me in the right place will take away all of this pain. I just have to find a way to survive. Today was hell. So, so much pain. I doubt that I will be able to sleep much. Maybe a sleeping pill combined with a pain pill will give me some tiny break from this agony.

The manual traction really shows me how much pain I am living with. There is a constant heavy weight on top of my head, just crushing me. There's a feeling of sickness inside my core that goes away with my head in the right position. There's pain through my face and a feeling of pressure throughout my skull that goes away. I can't imagine what my life would be like if all of these symptoms that are such a constant part of my life could be relieved. I have an idea what it would feel like. Manual traction gives me a glimpse of having a totally different body. It feels like anything would be possible if I could just get fused in that perfect spot. Of course, there is always the fear that it won't work...the fear that I will be just another example of a failed fusion surgery. I know that surgery failing is a possibility, and that I may have this pain for a lifetime. But I have to believe that there is a chance that it will work...a chance that I will be different. Without that hope, without that light at the end of the tunnel, there's no reason for me to persist. I just don't know how to go on living like this. How to continue working??? Functioning? Getting out of bed, ever?

How to not cry every moment of my life, knowing how much I've missed out on, how much I will miss out on. Knowing that I'll never know what my life could have been; who I could have become. Knowing that I will not be able to have my own pass on a part of myself and create a new person. That's a very big deal to me, considering how much I am like my important she is in my life. Knowing that the possibility of having a child of my own doesn't exist. My broken body doesn't have enough to offer. It wouldn't be able to survive pregnancy. And even if it could, my diseased genes should not be passed on. Who knows if I will ever have what it takes to care for any child, even if it is not biologically mine? How empty would my life be? I love my dogs more than most people, but that isn't the kind of fulfillment I need from my life. I need a bigger meaning for my life. Someone to teach the things that I'm learning. But it isn't a dream of mine to teach my own child how to deal with these horrible illnesses. I won't pass this evil on. This disease must be stopped. And the best way I can think of is to not pass on my genes.

I do have hope that the next surgery will do it. I just have to figure out how to get to survive that long, how to make my future happen. How do I face a single more day like this? I don't want to wake up. I want to go to sleep...the kind of sleep where you can get far enough away from your pain...where you get a break. But I don't want to wake up anymore. Too much pain. Too much straining of my body, watching it deteriorate and waste away. It gets harder and harder to do anything, as my body gets more and more out of shape, my muscles waste away, and my veins get worse and worse at pumping my blood back to my brain. I don't know how to keep trying. And yet, I really have no alternative. It's not courage. It's that I wasn't given a choice in this matter. I used to think death was a reasonable alternative, but I now understand that it's not an option. It doesn't even feel fair at times. I am trapped in this this damaged body. Shouldn't I be allowed to choose death? But no, I have too many people to live for. I can't abandon them. It feels like an obligation at I'm being forced to keep living this life. But I am not suicidal anymore. I promise you that. I'm simply stating that I do not have any option but to continue living, to keep trying, no matter how terribly hard it gets. But that is not bravery on my part. It's simply having no way out of my situation.

I am incredibly grateful to not be alone in this constant, daily battle. Without the unfailing support of my loved ones, I would have given up many times over. In that way, I am the luckiest girl in the world. I am truly blessed. I hope to continue to share about my closest supporters in future posts. I am also grateful to have a place to release my negative, depressing thoughts. It helps to keep me sane. I am humbled that anyone reads this, and even more humbled that people are not scared away by my true feelings.