22 – Waiting for the decision

April 26, 2012

Yesterday in the morning, my CF- specialist was here. He said that – even if they operate my vertebras- the bones won’t be stable enough to stand a transplant. He wanted to decide it with the other medical directors today. But they didn’t talk to me today😦 He also said, that he thinks my feet got worse. I didn’t notice it, but they said, that something, that worked before, doesn’t work anymore.
In the noon some friends visited me, that I haven’t seen for 4 years. I was so happy.
In the afternoon I slept a lot, I had lots of pain and felt very bad at all.
In the evening they did another MRI to check the paralyzing of feet, which is caused by the spine. It took very long because I had many cramps and we had to repeat the test.
In the MRI machine I have to lie down on a hard stretcher, that’s incredibly painful for me because of the broken, infected vertebras.
After that I watched Dr. House to distract myself.
Today in the morning I still didn’t feel better so I slept till 11am.
Then I had Physio therapy, breathing therapy, very little muscle exercise and lunch. And they put a needle in my port for the first time.
Then the neurosurgeon showed up to check my feet again. She only said, that they will think about a surgery again.
After that I was drawing and painting all day while listening to audio books. I had so much fun, that I didn’t want to stop, so I was drawing for 5 hours.
Right now, i am working on a picture for Luis. I hope he will like it. After this one, I am going to do a surprise picture for my dad. Then the Eiffel tower for my stepson, the NY Skyline for my brother, and another pic for my other brother, but I don’t know what I will do for him.
I love, when I can make them happy.
I am sending you all a big kiss.

I was also doing a radio interview for a radio station in England today. It was very new for me, i never did that before. But it went very well.
In the evening a friend visited me. Her daughter has CF too. She brought me cool presents🙂 Now the pain is very strong and I’m just watching some TV. Of course I’m nervous because of the transplant. Not knowing, If i get the Chance to get new lungs or not. It’s a weird feeling to know, that two persons will decide if I live or die.
But anyways I am very calmed most of the time. I didn’t think about all that almost all day, the drawing and my audio books distracted me completely.
I think for my family and my hubby it is much more terrible than for me. I can give up anytime. And one day I will just disappear. I just won’t be here anymore.
But my family and my hubby have to live with it forever. Their sadness and worries afflict me so much it weights me down more than anything else. It breaks my heart, when I see them cry.
Sometimes I want to hide everything, to protect them. But that wouldn’t be fair.
When I realized for the first time, that I will die, I treated Luis very aggressive. I forced fights with him. Unwittingly I tried to push him away from me to protect him.
I am happy, that he stayed with me anyways. Today I feel incredibly sorry about that, but at this time I didn’t realize it . I had so much pressure, I was nervous, stressed, fraught and overcharged, that I was very moody and impatient.
I wanna apologize to everybody, that had to suffer from that.
It was really hard for me in the beginning. Of course I always knew, that CF is a deadly disease and I have been very sick for a while. But last fall/winter i finally really realized and accepted the consequences. My subconsciousness started to understand, that I might die, when I started to get worse quickly.
This process was very hard for me, but for the people around me it was even harder.
Thank you all for not running away and standing by me in this hard, tough times.
Since then I am enjoying my life, even when I am in hospital. I ordered new DVDs and I received them today. I love to draw and I see that I can put a smile on people’s faces with my pictures.
My parents, sister and brothers call and text me every day. I found many things, that distract me and make me happy.
At the moment i don’t feel so bad here in the hospital. I just hope I cam go to my sister’s wedding and that I can be home when Luis comes back to Germany. I miss him so much.

3 Responses to “22 – Waiting for the decision”

  1. drmikeihs Says:

    Thank you for your courage and your honesty, Daniela. Your words and especially your spirit will inspire many. You know I listen and hear you … hear your words … the words from your heart, and I truly hope that the people around you have the courage to be with you and to hear you.
    My spirit is with you.
    Contact me at any time.
    Dr. Mike

  2. MiddleAgedLady Says:

    Daniela, You’re so articulate and I appreciate you sharing your thoughts and feelings. I pray you can find relief and ease as much as possible. I also paint, and find it an wonderful escape!

  3. ziaboga Says:

    hola Daniela, acabo de leer tu entrada y me ha dejado sin palabras.es normal que a veces discutas con luis o con tus familiares,pero ellos no lo tienen en cuenta, porque saben que eres una persona especial.Te entiendo cuando dice que te apena que algún día no estarás y que sufres por ello.mi padre nos dejó cuando yo tenía los 12 años y vi que sentía que nos abandonaba.No te castiges por eso e intenta ser feliz en los pequeños momentos como dices muchas veces, pintando, con tu marido etc.Espero puedas ir a la boda de tu hermana y seas muy feliz ese día.
    Es duro que los médicos decidan por nosotros,no es justa la vida.
    Quiero que sepas que cuentas con todo mi apoyo y el de mi mujer, y estaré ahí, para cuando quieras hablar , llorar etc, tienes mi mail .te mando un fuerte abrazo
    jesus ureña.


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