29 – Back in hospital

May 30, 2012

Today I went back to hospital. I am thinking a lot. I don’t feel very well today.
Two days ago I had a great day.
I felt good, I didn’t have blue lips because I was breathing much better than usually.

I was outside with some friends and we were sitting on a kids’ playground, talking and having fun.

Sometimes I was very quiet, I tried to see everything, to smell every flower, to safe every little detail in my memories. I felt like I will loose all that soon. I don’t know why I felt like this. But it was a very very strong feeling.
In the evening we had dinner together and we had a great time. I came home late and felt tired. But I couldn’t sleep anyways and had been up all night again.
Yesterday I bought some summer clothes after I talked to my doctor. I felt very bad because my lungs got a lot worse over night.
Then I picked up two friends and we went to the movies together.
I couldn’t really eat for some days, so I decided to buy a burger and tried to eat it. My first meal for this day- at 7 in the evening.
I was really hungry but although I really wanted to eat this burger, it was very hard for me because my breath was so hard. I needed 90 minutes to finish a stupid little burger.
I was in pain all the time and could hardly sit… I enjoyed the movie but the pain distracted me a lot. I was happy anyways because I could get out.

On our way home I still had huge breathing problems. I became very sad.
It’s hard to accept that you are so sick that you can’t even eat a burger or watch a movie without pain.
The days before were better than usually. But since yesterday I feel very bad. Especially at night. I can’t breathe and I feel my heart beating like crazy. Without any normal rhythm.
When the lungs get worse, the heart has to work more and after a while, this can destroy the heart.
I feel my back getting worse. Last night I barely slept because the pain woke me up very often. The ride to the hospital was horrible. The pain was killing me and my breath gets worse.
I share my room with a younger lady this time. But she won’t be here tonight. I am happy to be alone tonight although the lady is very nice.
The doctors told me, that there is not much that they could do for me. The back has to heal before I can go to the other hospital for more transplant tests. But the back isn’t healing. They say, that there is nothing they could do to make it heal.
Most probably they will let me go home in a few days because they can’t help me.
They are giving up.
I always say that I won’t give up and that I will fight. I won’t give up. But am I really fighting? My enemy is invisible. The only thing I do is to rest a lot. To do my therapy and treatments. I just do nothing. I sit here and wait. I wish I could really fight. I wish I could do something. Something that would have a result. Work hard. Or whatever. But just resting and hoping the back will heal when it doesn’t move is killing me.
I feel helpless. I do everything that the doctors tell me. But no matter what I do or don’t do I get worse.
It’s hard to see your own body giving up while your mind is fighting, while you are full of hope and mental power. They say that a will can move mountains. I wonder why it can’t move the mucus in my lungs.
I want to live. Sometimes I get mad. At my body. At the world. At the cf. I feel like my time is running out. I feel stressed. Nervous. Scared. Angry.
Sometimes I feel better and then I feel like everything is just a nightmare. I think I will wake up soon. I feel invincible.
Sometimes I accept the situation and just stay in bed calmed and in peace.
Right now I feel like I want to fight but there is nothing I could fight. I can’t see my enemy.
I just know that I don’t want to die. And that I want to breathe. That I need my back to heal so I get new lungs. I just don’t know how to reach all that right now.

2 Responses to “29 – Back in hospital”


  1. Dani, you are strong and I will always admire you about that. I certainly wouldn’t’ve made it this far with a disease. You are a great person, and I know you will continue to be strong. I know sometimes it must be tough, and it probably doesn’t really help when your friends say we’re here for you, because there’s nothing we can do but love you and talk to you. I heard about this drug in the news that’s supposed to help relieve the symptoms of CF. They tested it on this little girl, and the article said her symptoms “vanished”. It’s also an expensive drug too. Unfortunately I don’t know where to find the article. I tried a Google search and that didn’t help. But maybe someone else can find this. Don’t worry Dani. You will be okay. You’re strong, and though you may have doubts, you are a fighter. If you weren’t a fighter, you’d be gone already.

  2. ziaboga Says:

    hi dani, I’ve read your post and I understand you.You’re tired, hopeless.sometimes you want to give up because is very hard to wait for a new lungs when you back is bad.however carson says you can’t give up.you’re fighter, strong and he has reason.In you fight you’ve got to go ahead.you’re young and still can and must fight.Remember what we talked yesterday about my family.my brothers couldn’t fight because they were babies and you know what happened.I support you and I want send you strength to continue fighting.A big, big big hug.
    Your friend & fan & follower.
    jesus


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