17 – Expect less to be happy

April 18, 2012

Today I was very tired because I haven’t slept much last night. I watched some TV in the evening, and when I wanted to sleep, they gave me some extra- morphine because the pain was very bad. I fell asleep, but after a few minutes I woke up panically, because I had such terrible nightmares that I was still scared and confused for a long while after I woke up. Luis calmed me down and tried his best to convince me that there are no ghosts and that nobody is going to kill me. When I finally believed him and tried to sleep again, all my machines were making noises every few minutes. The alerts kept waking me up every few minutes and I wasn’t able to sleep until 5am. I was so tired and just wanted to sleep. I felt like i couldnt no more and i was really desperate. So at 5.30 the nurse gave me another morphine dose and I was at least able to sleep for an hour.
After breakfast I went straight back to sleep. I didn’t sleep very tight, but I also was not really awake. I was like this till about 4 in the afternoon.
I have a new room mate now… I don’t really like that😦 it is not cool to share the room with somebody when you can’t get up and you have to wash yourself and to pee in bed. I have no privacy, not even a little.
In the afternoon the Docs told me, that I will get a new port-a-cath. It is a little thing which they will operate under my skin. A little tube goes from the port to my heart. You can sting a special needle into the port to give me infusions and injections without looking for a vein.
Next week they will also decide, if they are going to operate my spine. If not, they think about moving me to a hospital near my home. Right now they still can’t put me back on the transplant- waiting- list. It makes me a little nervous.
Tomorrow my dad will visit me.
I received a lot of questions🙂 many people asked me, how they could motivate their kids to do their treatments and to take their pills. Honestly, I have to confess that I didn’t want to do my therapy either. The only way my mum could convince me, to do my nebulizer therapy was, to let me listen to my favorite songs very loud. You should let your kid do something, that is usually not allowed. Maybe watching TV… It is more difficult when you are trying to convince a teenager or a young adult. Many parents asked me to talk to their teenagers and to tell them about my health right now. I did and most parents said, that the behavior of their kids changed. Most of them don’t realize, how horrible their health could get, until they see somebody who is already going through this. I think there is not a general advice that I could give you. Every kid is different, but if you have problems like the ones I described, feel free to text me.
Also, many of you ask me, how I can stay so strong and they would already have given up. Well- I don’t think i am very strong. I also cry sometimes, I also have bad moods sometimes. They never last very long, but I also have them. I think that everyone of you would be as strong as me. Because I have no other choice. I learned to appreciate the little things. I love my life because I have great moments anyways. A great moment to me is, for example, s moment without pain. That makes me smile. Or when I can breathe better. I have really super great moments in my life also. For example, when my family visits me, when my friends visits me, when I get phone calls, when people send me postcards to the hospital. I love my life. I try to feel well in the hospital. I have lots of sweets and popcorn here, because I don’t like the food. And of course, my redbull, that I love so much. I have tons of pillows here, and my dad and my grandparents gave me rabbits for Easter, like Teddy bears.

You just have to learn not to expect so much. That’s the easiest way to be happy.
Today I haven’t had any visitors, but I am happy because my family and friends called me and sent me emails. And I am very very happy because I know that my dad will visit me tomorrow and I am looking forward to it already. And because i am not worse then yesterday.
If you cannot change the situation, you should change your point of view to see things differently.
Stop complaining, accept the bad things, make the best out of them and count your blessings.That’s the only way to be happy.

2 Responses to “17 – Expect less to be happy”

  1. seanset Says:

    Hi Dani,
    Both the girls have always been very good doing all their treatments, Robyn’s treat in the morning when she has done her nebs is to be able to watch Shake it Up on the Disney channel (she loves that program)
    Sending positive healing thoughts your way and hope your moved nearer to your own home soon.🙂
    Sean

  2. ziaboga Says:

    Hola daniela:
    Siento que hayas pasado una mala noche con pesadillas y dolores.también creo que es bueno llorar de vez en cuando, yo lo hago a veces y me desahoga.
    tienes razón al decir que no se debe esperar mucho de la vida, porque a veces la vida nos da estos duros golpes, por eso te dije ayer que yo también aprovecho las pequeñas cosas que tengo, mi mujer , tomar un cafe etc.Sobre lo de la terapia , entiendo que a veces te den ganas de abandonar, y que mucha gente joven no la hace y sus padres se preocupan, pero tengo que decir que debemos intentar que la gente haga sus terapias , pues es la única manera de poder seguir adelante.
    Vivir con dolor es insoportable, pero debes luchar por aprovechar esos momentos sin dolor para disfrutar con luis y tu familia de esos pequeños momentos que te da la vida.espero te operen y todo salga bien.estaremos en contacto.saludos y un abrazo desde españa.
    jesus ureña


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