16 – Don’t judge

April 17, 2012

Yesterday a friend of mine and his girlfriend visited me. I haven’t seen him for 10 years. It was very nice and we had a lot to talk about.
In the morning and the noon, before they showed up, the pain was very bad. I have the feeling, that my back is more swollen than before and the legs are more numb than before. Unfortunately the doctors didn’t have any further ideas. But when my visitors where here I was distracted so it was a little easier.
In the evening I just watched a DVD before I decided to sleep because I was very tired. Suddenly i felt like I was burning inside, it was a horrible pain that I’ve never felt before. I was sweating like crazy although on my skin i felt very cold. I had cramps and terrible pain an I started to throw up like crazy. The nurse called the doctor, but – coincidence- my favorite Doc showed up and gave me several infusions and injections. I felt a little better soon and finally I fell asleep, because I was so exhausted. I was able to sleep 3,5 hours without waking up.
Today I felt better and I was able to continue to draw my picture a liitle. It is almost finished 🙂 In the afternoon my mum visited me. In the evening I had similar symptoms as last night, but it got better with the medicine.
Just with Eating I had trouble, yesterday and today.
The Doctor told me today, that my Antibiotics will need at least one more weeks until they start to work and till that my back, the pain and the paralyzing won’t get better before. I will need at least 6-8 weeks of antibiotic – infusion and then I have to continue the therapy with antibiotic pills. Most probably i will be here in hospital for at least two more months. Maybe more. I hope, I will be well enough to go home then. But the doctor’s words didn’t really give me hope. I still can’t feel or move my feet. And I start to think about how my life will be if it won’t get better and I will not be able to walk ever again. Maybe everything will be fine, but I am wondering anyways, what would happen if not.
I am only 25 years old. I know, that I need new lungs to survive. But besides, what is on my mind right now is, how i will live when I am paralyzed forever. I am sure that I will still love my life and I will find a way to deal with it. But anyways there will be things that I will miss a lot. I always wanted to dance with Luis when I have my lungs. I hope so bad that I get the chance to do this. Many things of my bucket list see things, for which I will need my feet. But I won’t give up hope.
Today, Luis received some flowers from me 🙂 I wanted to send him roses, but it wasn’t possible to send flowers online to an adress in the USA when you order them from Germany, so I asked a good friend, that lives in America, to order it for me. Luis got them a few minutes a go and I hope so bad that he is happy and surprised, and I really hope I could make him smile. Usually I worry him.
Yesterday, a kid started to text me on Twitter, asking me to follow him because he has CF. Of course I did what he asked for, but soon I was perplexed. This kid didn’t know anything about the disease, he even said a lung function and the fev1 was tested in the blood. So I took a look on his timeline, where I can see, what he writes. I saw, that he was sending the same message to everybody. “please follow me, I have cf” and it sounded, like he was proud of it. Like it was something cool and great, to have Cf. Then I noticed, that he was texting especially to celebrities and stars, trying to get in touch with them by “pity-tactic”. I saw that he uploaded some pictures, and when I looked at them, I saw that he obviously had stolen it from a homepage. So I wrote my other twitter-friends , that this guy most probably does not have cf, so they did not follow him. They showed me, that all the pictures, that he posted, where stolen and could easily be found on google. So I texted him and tackled him. He disputed everything and continued texting everybody how sick he was and that they should be friends with him because of that. This upset me a lot. First, because we real patients suffer so much and he thinks it is cool to say he has Cf, and to abuse such a horrible disease for his advantage and stupid wish, to be popular. Second, because nobody believes us real patients anymore then. People doubt every sentence we say. It is getting harder, to find people that donate money for the Cf research.
So I got really mad and informed my followers several times, that this person is not real and I tried to tell everybody about his lies. Unfortunately this got him more attention. It was exactly what he wanted. I just didn’t notice it, maybe I didn’t want to notice it. Today a very honest follower wrote me an email, telling me that I just did what the kid wanted and besides, that I annoyed my followers with those repeating tweets. So I thought about his words and decided, that he was right. I suddenly recognized, that I was judging somebody that I did not know and whose story I didn’t know. The story, that could be the reason, why he acted like this. So I decided, to ignore him from now on.
Usually i am very careful with judging people. Every person has a reason why he is, like he is. Everyone has a story and a past, that made them the person that they are now. And as long as you don’t know those reasons, you should be careful. We all have mistakes and behaviors, that others don’t understand. Unfortunately, we are very quick in judging others, even when we are not perfect ourselves.
I already got some questions about Cf and the life with Cf, but also personal questions. I will answer them soon, please be a little patient. But feel free to still send me any questions you have.
And for now: good night 🙂


5 Responses to “16 – Don’t judge”

  1. Carson Rodke Says:

    You were right Dani. He was just looking for fame. It’s sick the way people do that.

  2. ziaboga Says:

    Hi daniela
    I’m reading everyday your blog and I wish you feel better and better and you have soon a new lungs.I hope you finally can walk and dance with your boyfriend.
    excuse me because me englishis not very good but I’m improving to stay in touch.
    have a good day
    jesus ureña from bilbao,spain.

  3. kenjabin Says:

    Dani, it’s hard to know sometimes what the right thing to do is. I’ve so far been able to ignore those who were ‘faking’ cf, but I’ve had the advantage of people like you, Maci, and others to raise the red flag about them before I got caught up in their scheme (Maci caught one a couple of months ago.) The whole thing about people faking an illness is very sick indeed. But truth will always win out.

  4. Jessie Says:

    Hi God Bless you:
    I dont know you but I follow your blog. Please dont get discourage, I can imagine its very hard all that you are going through but have faith in God that through him all things are possible. Having faith is seeing things as if they have already happen, so give thanks in advance to God for your lungs. Do not worry about your being paralized it wont happen, you already have alot of things on your mind to deal with dont need another stress, focus on your future and getting better. I hope you will get your lungs soon and that you will be able to be with your husband Luis. Take care and may GOd bless you in abundance. Jessie from PA

  5. Mark W Says:

    I read your tweets about this silly and sad faker! You must realise how sorry a life this person must have to claim a illness that they don’t have . Don’t worry about people like this as life has a way of paying them back.The main thing is that you get better and stay strong so that you can get the chance at a new life with new lungs.Then you and luis can have your dance:)

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