27 – Don’t give up
May 13, 2012
I haven’t written anything for such a long time. 8 days ago, on Saturday, I finally left hospital and went home.
After I practiced walking an moving every day, it was working very well.
The doctors say, I should stay in bed because of my back but I feel that this destroys my lungs, so I get up anyways.
First thing I did when I was home was sitting in my car and driving around. Finally I was alone- for the first time since weeks.
I screamed, sang, shouted and was happy. Finally I was free.
I stopped fighting with Luis a few days later. It was a huge shock or him that they won’t give me lungs and it was very hard for him to deal with it.
The week was very hard for me. My lungs got very bad because of the time in bed. Even the littlest things are so exhausting and hard for me.
I try to hide it and to pretend that I’m fine.
On Friday, Luis came to Germany. I was so excited and of course I am so happy that he is here.
We went to my sister’s wedding and it was beautiful. But sometimes it was also a little hard for me.
When people look into my eyes i see pity and sadness. I can barely stand it. It is like I was already dead.
The church was nice. But all the time I was thinking, that at my funeral it will be the same process, the same prayers, same people,… It was weird.
I was proud of my sister and happy, that I could be with her on that special day. But I also wondered, if I will have enough time, to get married. To enjoy the future. If I at least have a future.
I enjoyed the day. It was hard that I couldnt dance like all the others. Often I feel locked in my own body. It’s like a prison. I want to do so many things and my body doesn’t let me.
Tomorrow I go to another hospital, to see if they would transplant me. The chances are very very low, but I don’t want to give up.
I want to go to every hospital, that transplants lungs Until I find one that will transplant me. I hope I will have enough strength, energy and power and I hope I will have enough time, and
Stand the CF long enough.
It helps me a lot that Luis is here at the moment but it’s sad that he has to go back to the US after 10 days.
It’s hard to know, that most probably we will never live together and that most probably I will die alone.
I just try to enjoy every little
Moment, even when it’s hard because of the pain and the breathing pro lens all the time…
But I wont give up. Wish me good luck for tomorrow.