12 – Send me your questions
April 14, 2012
Today it’s Friday 13th, they say that most people have bad luck on that day. I don’t believe in stuff like that. For me it was a good day. My dad was here again and I really enjoyed the time with him. We talked a lot and I explained Twitter to him🙂 now he has his own account, too. He bought me nailpolish and we did my nails.
It felt good to talk to my dad for so long. Usually we don’t have that much time to talk.
Later my best friend visited me with her boyfriend and her mum. That made me very happy too. Today the pain is worse again, burin in such a good mood and I feel so happy that it’s not that terrible. The break was so good, I really needed it and now I am ready to fight again. Ich also ate, I could not eat real food but I had tons of popcorn and sweets.
My blood pressure was better tonight. Finally!!! For the first time since I was taken to hospital. My doctor was also here. Every time she tells me, that there is nothing more they could do for me at the moment., she starts to cry😦 I don’t know how to deal with it.
This weekend it’s grandma’s birthday party and im still sad that I can’t be there. It would have meant a lot to me. Although I am sure, that many of her friends would have looked at me stupidly because of the oxygen tube. I stopped worrying about other people’s opinion about me long time ago. When kids ask their parents, why I have this tube, the parents usually feel very ashamed. But when kids ask, I don’t mind. I explain to them, that the oxygen helps me to breathe, because I’m sick. Then it’s ok for the kids. What annoys me is, when adults stare at me for minutes. Often I can’t shut my big mouth and say things like “do you want a photo of me?” or “and if you turn around five more times- the tube will still be there” and sometimes more aggressive things. I have CF friends, that are afraid to use the oxygen in public. I told them, that the people that are staring usually are superficial and dumb. That those persons are not worth it, that we f*ck up our health, just because we are afraid that they could talk bad about us. Let them stare! I know that my hubby loves me with my oxygen, my scars, my paralyzed feet and when i’m sick. My family and friends too. They’re all there for me and love me with and without a tube. Of course it’s not easy to find people like them. For all my life I waited for somebody like Luis. I am so glad and happy that I found him. He loves me unconditionally. My friends and him love to go out with me and to have fun, but they also dont mind staying at home with me when i am sick. I am so thankful, that they love me the way I am. I don’t have to hide my condition from them.
Dear cf-patients, if you have to hide your disease from a person, this person doesn’t deserve your attention and your time. They don’t deserve to be a part of your life. It’s better to have a few real friends than lots of fake friends. Quality is more important than quantity.
One of my friends sent me a lot of CDs and DVDs to the hospital🙂 i was very happy when the nurse came in with a package in her hand. It’s nice to know that i’m not forgotten here.
I am still afraid that I won’t feel my feet forever. At the momemg we don’t know if the numbness and the paralyzing will go away. I also don’t know if they will operate my vertebras so I get the chance to get new lungs. If they don’t operate them, I won’t get back on the transplant list. The unknowingness makes me very nervous. Most of the time I don’t think of it. But when those thoughts cross my mind, I think about how everything will be.
Since I have this blog I get so many nice twitter messages and comments here on my posts, that’s so sweet.
As I don’t have much I could do here, I started to support parents of CF-kids and also Cf patients. They can always talk to me when they just need somebody to listen, but more important, they can ask me questions, to which nobody has been able to answer so far. A frequently asked question is, for example, how you can motivate a kid to do his therapy. of course, everyone of you, who is reading this right now, can send me his questions. Either on twitter ( @Kruemelfrost ) or in an email ( email@example.com ) I’m looking forward to your questions and I hope that I can help you.
You also can send me personal questions about me during the next days. Anything you want to know about me- ask me and i will answer here in the blog.
My sister, my dad and my friends received my little presents that I was telling you about already. They were very happy. And I was happy, because I could make them happy. But I know that I will never be able to do as much for them as they do for me. That’s very hard for me to accept. In May my sister gets married. I hope so bad that I will be able to be there. It would mean so much to me. I love my sisters and my brothers more than anything. Unfortunately they are all so worried about me and are often sad because of me. I wish this would be different. To me this is harder than the disease itself. I feel so sorry that they are always so worried and sad.
Well. Now I have to sleep. I’m sure I won’t be able to sleep and will spend my night listening to audio books, as always.
Thanks to everybody for all the support!