11 – Be grateful

April 12, 2012

Yesterday I wasn’t able to write. It was such a horrible day. My biopsy was planned for 8am, but took place at 2pm, so I was waiting all morning. I was in a lot of pain and tried to rest after another sleepless night. In the noon my grandparents, aunt, uncle and cousin visited me. I was very happy to see them. We talked a lot and they distracted me from my pain. Then my dad showed up, too. But in that moment the nurse said that the doctors are ready now. My family members were all waiting for me while the doctors worked on me. They put an incredibly huge needle in my back into my spine. I couldn’t get anesthesia because the pulse and blood pressure was too low. It was so painful I was crying a lot.
When they finished, I noticed that I couldn’t feel or move my right leg. I talked to my family for some minutes before they left. My dad stayed. About an hour later the pain became so cruel. I really couldnt stand it. I was screaming and crying. They couldn’t give me more painkillers because of the blood pressure. It got worse and worse. My dad stayed till 8pm and I was so happy he was there although he felt very helpless. Then he left. I was about to give up. I just wanted this pain to stop, no matter how. The night was so terrible. I didn’t know what to do. I never felt like this before. It was horrible.
In the morning my dad came back. They gave me more morphine and other painkillers. They worked and I got better slowly. Some special pain doctors showed up and they gave me two more pills. When they started to work, I finally had a break. For the first time in weeks the pain was ok. It was still there but on a level that was really ok. We washed my hair in bed. I was able to eat. I was drawing a picture in my bed. I played with my iPad. My mum visited me too.
I enjoyed seeing my parents so much. And i gained so much strength, energy and hope because of the pain- break.
I am stronger now. I really was about to give up. But now i am ready to fight again. They told me that the pain will come back. I still can’t feel or move my feet. But im full of hope anyways. I am so happy. Right now I am watching a tv show. The pain is already coming back slowly, but I don’t really care. I know I can fight this.
Im so thankful for all the people that have been there for me yesterday. I have such a great team that fights with me. What would I do without you guys?
My best friend arno, who is also uploading this blog for me as I am in hospital, writes books. He wrote a poem for me and published it in his latest book. And everybody who buys it reads that poem. That’s so sweet of him, isn’t it?
This Sunday is my grandma’s big birthday party. She is so sad that I won’t be there 😦 and i’m sad, too. I wish I could go there and see everybody. I miss my sister and my brothers. I also miss my parents when they are not here.
Tomorrow my dad will visit me again. I asked him to buy me some nail polish. I wanna do my nails so I feel a little better. It changes everything when they wash your hair, if you do your nails. If you put on some lip gloss or some earrings. You like yourself more then. It helps me to feel better.
What also helps me is music. I love the music, that my hubby does. His son is producing too, and he did a song that I posted to my twitter and Facebook. I was listening to it a lot and imagined I was dancing. Everyone of you should listen to it 🙂 Right now im watching some tv. I haven’t been able to watch anything for a long time. And then I really hope I will be able to sleep tonight. I miss to sleep.
It is incredible, what you dream of when you felt so bad for a long time. Every little thing is so big for me now. I am happy about being able to talk. Eat. Sleep. Watch tv. Draw. Im happy about all the things that are normal for everybody else. It is so true when people say that you only know what you had after you loose it. Everyone of you, please be grateful for what you have and appreciate the little things.


3 Responses to “11 – Be grateful”

  1. Mark W Says:

    Glad that the pain medication helped you today.Pain is so hard it drags you down doesn’t it! I am hoping you will be able to get a good sleep tonight, my thoughts are with you:)

  2. Hello from Spain, I’m the father of a 21 yo girl with cf, Olaia. One year ago she was in a similar condition to yours. Doctors saying transplant was not possible because of damaged bones, heart and colonisation by b. cepacia. She was also suffering horrible pain many months at the hospital.
    Some months later she was getting a little better and doctors decided go ahead and she got her new lungs this last summer.
    Now she is having a wonderfull time.
    I’m sure it will be the same for you!!!!
    We made a video for our friends and may be you’d like to see (although it’s in spanish):

    With our best wishes,
    Salva and Olaia

  3. Stephanie Thomas Says:

    I love you so much Dani. Thank you for writing this. I’m glad they helped you with the pain. Praying it doesn’t come back as severely. Love, love, love & hugs & kisses. Miss you. ❤ P.S. I wrote you a letter, it made it to Germany but was sent back to me :-(. Is there an address I could send it to now?

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