Sunday, November 16, 2008

That about sums it up

I don't even know who I am anymore. My entire world has been turned upside down and inside out in a matter of 3 weeks and there is absolutely nothing I can do about it. I have never been so scared or helplessly lost.

I am in constant pain and it is getting worse with each day that passes. It's a lot worse than we originally thought and I am terrified the numbness isn't going away. And now it's spreading to my left side and I feel it spreading upwards and I know it is only a matter of time. I am hopeful the steroids will work, because if they don't, I have no other options. And the thought of this is unbearable. There is no "plan B", there is no miracle drug, there is no magic pill.

I want so desperately to curl up into a ball in my bed and stay here for the rest of eternity, yet I fight this urge every morning. I trudge on and force myself to move, to get going and to get on with life. Part of this is sheer stubborness, and I refuse to succomb. The other part is because my life isn't just about me anymore. I have a daughter who is my world and it kills me that I am not supposed to lift her up anymore. She wants me to hold her and I can't and it is just not fair. And I have no idea how to explain to her what is going on with my body. She is 4, and she is the reason i refuse to give up. She is the only thing I have ever done with my life that has made sense. She is growing up so fast.

I have a fiance who has stood by my side, the silent and rock steady person who's shoulder is soggy with my tears. I know this is killing him. I have watched his heart break and know it is my fault. Yet he remains steady and unfaultering, an emotional robot at times. I don't know what he's thinking and it drives me insane. I don't know how he is dealing with this, and becuase of that I don't really want to tell him how bad it is getting. I don't think he could handle it and I question if he is really staying. We are looking at marriage and the finacial benifit that would come with it and I feel guilty that he is put in this position. I don't know what i have to offer him, I don't know what's going to happen 6 months from now. I don't know how my body is going to hold up, and I feel guilty for wanting to marry him. Does he really know what he is getting into? And the very thought of living without him tears me up inside. I don't question his love for me I never have, but I don't know what I have to offer him.

I keep trying to wake up form this nightmare and each morning I awaken so stiff that I can barely move and I feel like reality has come back to slap me in the face once more.

I am angry that I have no answers. I am angry that I can't beat this, and I am angry that I have no one to blame for this. It's not like I slept with someone and caught this, it's not all genetic, it's nothing that I could have done in my life to prevent this disease from taking over my body and I am angry that I cannot blame anyone for it.

And if it isn't bad enough that my body is failing me and refuses to cooperate I can't seem to find a common ground with my emotions and it's like the roller coaster from hell that just never ends and I don't know how to deal with this on my own. I know that I have to be strong and I know that I have to fight this, but I don't know how. I am entrusting my life to a doctor I have met all of 3 times and I have no choice. I have been poked and prodded, X-rayed, scanned, and now I get to go have a spinal tap. Nothing like the thought of a needle being guided past your spine and into your spinal cord to make you want to keep on going. I am just so lost.