13 – Let’s find a cure

April 14, 2012

Good Morning everybody 🙂 today i am in a lot of pain again and right now I’m waiting for the doctor. I hope she won’t cry again.
Unfortunately nobody will be able to visit me today. My best friend has been here in the morning for some minutes to say goodbye. They slept in a hotel here and now they are driving back to the city where we live. It’s about 3 hours by car.
Since I can’t read or watch movies, i did not know what I could do all day. But on Thursday my mum brought me things to draw, so as soon as I have a little less pain I start to draw in my bed. It’s still impossible for me to get up. While I draw I listen to my audio books, that I love so much since I’m here.

Sometimes I also just think about everything while I draw. I think about me, my life, the world, other people, just random thoughts.
Many people ask me how I am. But I noticed, that most people don’t want to hear the truth. It is just a rhetorical question to be nice. People don’t want to near about pain and hospitals. So usually I just say I’m fine. I noticed, that also some of my friends and family members don’t want to hear an honest answer. Not because they don’t care but because they dont want to see the truth. They try to ignore how sick I am and lie to themselves. It would be easier for me If i could tell them the truth about how I feel. It is hard sometimes to deal worn everything on my own. It would be easier if I could talk to them about my fear to die. But they always just tell me not to think about it because it’s not going to happen. Everybody that knows about CF knows that there is no cure and that the patients won’t become very old. My doctors already tell me that it doesnt look too good. And I am trying to deal with it. Some people tell me I just have to pray to be fine. Well. I don’t kmow what to answer them. Other people tell me that one day there will be a cure for CF. The truth is: a cure won’t help me anymore. The organs are damaged. They won’t recover, even if the Cf would disappear. I also hope for a cure, so that the little kids will have a better chance than we have today. But I know that a cure won’t help me. I need new lungs, that’s my only chance. I have seen many of my friends dying of CF. I can’t even count them anymore. I know how fast it can happen. Some of my friends were doing so great, they were able to live normally, to work etc. But then a stupid cold or flue killed them so fast. One of them went to hospital because of a cold and 2 weeks later she died. Another girl was in a traffic jam and she was running out of oxygen. They took her to hospital but it was too much for her and she died after 3 days. Most of the patients that I knew, were looking quite normal before they died. They didn’t look really sick, like a cancer patient. When persons see us on the street they can’t imagine that we are that sick. They see my oxygen tube, but besides I don’t look sick. That’s why people sometimes don’t understand how cruel Cf is. That’s why most people don’t know this disease. Please help me to spread this blog, so I can tell people about CF. Only if many people know about it we will have a chance for a cure one day. So please show this blog to your friends and family, ask them to follow it and read my updates and tell them to show it to their friends too.
Please help. And I remind you again: if you have any questions about CF or about my life with Cf, feel free to send me a tweet or an email. I wish you all a great weekend 🙂


3 Responses to “13 – Let’s find a cure”

  1. donna Says:

    YOU are in my prayers and I am begging GOD to find a donor for you. Don’t be afraid ofn death. Death is peace and rest. I used to be afraid of death of am not any longer. Family & friends dont want to hear the truth because they dont want to lose you. You are special to them and they love you. I understand Dani. I can say dont lose hope but whatever you do, dont lose FAITH in GOD! Hang in there, stay strong & keep believing in miracles! There is no harm in believing in GOD, miracles or goodness in the world! You have made a mark in this world my friend. Prayers do work, don’t stop believing. ~Donna (old lady with CF 46)

  2. Murph Hutson Says:

    You are an inspiration! You’re right that people don’t want to hear the truth, but you keep speaking it. Everyone wants me to say my two boys who have CF are going to be fine. I keep telling them that’s not in our hands. Thanks so much for sharing your thoughts. I will pass this on and I will pray for you, I will pray for your doctors, and I will pray for a lung transplant. Keep spreading the truth about CF!

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