28 – The last days at home
May 28, 2012
Last night I haven’t slept at all. On Wednesday I have to go back to hospital, but I had two beautiful weeks at home. Luis was here for 10 days.
We went to the mountains for three days and had a wonderful time.
We also went to a lake with my cousin and his girlfriend. We were more outside than home. It was so cool.
But unfortunately it was all very much for me and since he left I’m at home very sick and in pain again.
The Other hospital, where I went with Luis, called me. They told me that they don’t think that a transplant would be impossible. But they want to do more tests and so I have to go there soon. I really hope they will put me back on the list. My lungs are very bad already, so all the transplant doctors say, that I would only have to wait a short time to get a transplant. Maybe three months. Some patients wait for more than two years.
My moods are very weird. Sometimes I feel invincible and immortal. And sometimes I am convinced that I will die, and I start to feel sad when I think of all the things that I still want to do. In those moments I feel like my time is running out.
I felt like this last night. I was so sad and couldn’t sleep till 7 in the morning although I had a great evening, my friends visited me and we had a barbecue and I laughed more than during all the last months.
My family supports me so much and maybe I will go on vacation with my dad and my brothers for one week when I leave hospital. I enjoy the sun so much.
In the hospital I miss all those things. I miss the sun and the wind. I miss the smell of the flowers outside. Right now I cant walk very well but I spend all day in my garden, reading books or watching movies with my new iPad.
Yesterday I was driving my car in the sunshine, listening to loud music – that relaxes me so much, it’s the best thing in the world.
I try to enjoy my time as much as I can. I met two friends last week. We went to primary school together and haven’t seen each other for ages. It was so cool to meet them again.
But when we talked I noticed, how different our lives are going. They are talking about their jobs, they plan to have kids. I just plan to survive as long as I can. I plan my next hospital stay. I am thankful for every year that I can live.
We watched pictures of us when we were six years old. I felt weird. At this time I could never imagine, that I would ever be so sick.
I was dreaming like every kid. I wanted to become a lawyer, a doctor, a singer, an actor, a police officer,… I was a happy kid. I miss those times. When I thought I would live forever.
Today I feel a little better than usually and I hope I can go to the movies tonight. I love the cinema. I can’t go to clubs and big parties, but going to the movies with my friends gives me the feeling of being normal.
Some months ago I wrote a bucket list. I hope one day I can do all those things on the list. I hope I get my lungs.
But I’m already prepared for the worst case. I even planned my funeral. I think my parents will have other problems when I die. It shouldn’t be like this. A 25 year old person shouldn’t have to plan her own funeral. It’s just not right.
But I really enjoyed my hospital break. I had so many beautiful moments that will help me through the next hard times…
I will never give up. I found my way to deal with all those months in bed. I dream away. I draw and paint. I listen to audio books and watch movies. I call my family and friends. And of course I read all the nice messages that my readers here send me. I will never stop fighting. I want those lungs. I want to live. I want to have a future.