Living life with Cystic fibrosis

The diagnosis

Cystic fibrosis was diagnosed when I was two years old. I think my parents realized very soon that something was wrong with me. I used to cough a lot but all of my doctors blamed it on colds. I think that was the easiest way for them to explain it, but the truth is that they actually also had no idea what I had and how to help me.

When we talk about the past, my parents sometimes say that my defecation was very oily. My skin tasted salty. My hair didn't grow. I was smaller and thinner than the other kids. Everything I mentioned so far are indications for a rare lung disease that also effects the digestive system. The one I am suffering from. Cystic fibrosis. Now I know that. But in the past my parents were at a point of ignorance. They didn't know where to seek help because actually nobody could help them. Or could help me.

Finally our move from the big city to a small village around 400 miles away was the turning point my parents have been waiting for so long. A doctor from a small doctor's office already had experience with Cystic fibrosis, so she sent us to the next hospital to do a sweat test.

And now we had the answer. I am suffering from Cystic fibrosis. A shock for my parents. A shock for my whole family. Nobody knew this disease, but now I had it. I suffered from CF since I was born. But now we actually knew it. This turning point can either be seen negative or positive. I think that it was more positive, because now I could be helped and we finally had an explanation for everything. And I suffered from CF since I was born, so all in all nothing changed, except that I could learn to life with it.

- My life will change from that day on. My parents will life with the knowledge that their child could die a lot earlier than normal. They will life with the knowledge that their daughter might get a lung transplant when she's older. That she might life with a nasal cannula when more oxygen is required. But it's not sure. Because that's what "living" means. You'll never know what will happen. Nobody will. And no matter what life will give you, you have to make the best out of it. I'm living. I will life with CF. But I will life. I will be living my best life. Because that's the only thing that counts. Living life with joy. Living a life full of dreams, love and hope. Living life with Cystic Fibrosis. -

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So hey everybody,

I don't know if someone will actually read this book or this chapter. I would be glad if someone did it. But if not it will be fine too. I also kind of write for me, but I really hope that I may help others. To show them they are not alone. Cf isn't the worst thing in my life. I learned how to cope with it and it's fine. It is there and it will never be gone, so why shouldn't I accept it?

I didn't read this chapter once and I also think that I won't revise it, because I just wrote it and I think it won't be more honest or more true if I would think about it again.

so let's see what happens.

I hope you're all doing good and if someone has a really bad time right now, has to stay in hospital or just a bad day - please never forget thinking about your good ones. Please never forget thinking about people you love or that people love you. I believe in you and you will get over this time with a smile. Even if it's hopeless never loose your joy and hope, because if you're reading this right now- you're alive. And you know - that's a great gift.

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