38- Life goes on…

September 15, 2012

Now I’m here for 5 weeks already. I’m making good progress- at least that’s what everybody says. But I still don’t see it. Yeah I can walk a little but do I have to be happy about this? It should be normal that I’m walking! I’m just mad that there are still things that don’t work. I still can barely use my left arm. I still can’t concentrate. I still crash everything on the left side. Honestly I was about to loose faith that my arm will get better again. But today I was suddenly able to open my fist by myself. I tried this since I had the stroke and it never worked. But anyways I think I will never be able to really use it like before again. Last weekend I was allowed to go home again. First i went to get my nails done- they looked horrible since i couldn’t do them anymore because my left hand doesn’t work. They have rosa and purple glitter and a white zebra print. I really like them🙂

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Afterwards I got my glasses and visited my father and my brothers, my sister was there also.
We ordered pizza and enjoyed lunch together. In the evening my friend Nathalie visited us. Later we watched a movie.
next morning we got up very late. I usually hate that.
I was up long time before, but Luis wanted to stay in bed and when at 12 in the noon a friend of mine showed up, I was still in a sleepshirt, that showed too much skin for male friends so I was mad at myself for not getting up when I wanted to.
My friend showed Luis a typical German cake that’s made of onions and bacon… I liked it, but Luis wasn’t a big fan of it. In the afternoon I had to go back to hospital.
On Monday I got a new roommate, the old one went to another room. First I was really happy because she is younger and doesn’t snore but then I started to get to know her better and my mind changed a little. Yesterday she was going crazy. The nurse asked her to tidy up her table to make room for the dinner plate, but instead of tidying up, the lady just threw her things through the room. Luis helped me to take a shower at this time and first we thought that the lady fell, but then we heard the nurse and her fighting. They were screaming at each other like kids. And when the nurse left my roommate was crying and calling everybody to ask them if they could pick her up because there was no way that she would stay here. Later her sister showed up and finally she was able to calm the mad lady down. But for this the nurse had to promise her that she won’t come to our room again. I wasn’t even asked if I maybe really wanted this nurse to take care of me,
On Tuesday my friend Julia and her mum visited me, because we wanted to have a barbecue. The hospital has a place for barbecues outside that we were allowed to use. My cousin, uncle and aunt joined us. It was really fun and something else than always hospital rooms and hospital food…
My other cousin visited me last week with his girlfriend and they did a video for me, that I want to share with you guys and I will post it here tomorrow. My friends also visited me and my grandparents, my parents, my sister. I really have many visitors and Luis is still here every day. Right now we are looking for a way that he can stay with me in Germany but that’s really difficult😦 they want me to stay here for 5 more weeks but maybe I can get a single room in 2 weeks. If not I think I will probably go home. I need my privacy and I need some time on my own, At least a few minutes each day I’m never alone right now, the nurses even enter the room when I’m sitting on the toilet. I am very impatient and when things don’t work like I want them to just because I cannot help with my left hand I get very angry and this anger always affecting the ones that help me the most because they are around me in this moment. Luis, my parents and my sister have a hard time with me since the stroke. Today it’s Saturday and I’m at home again for the third time. They picked me up at 9am and we went to sign the contract to rent the new apartment. After that we had to buy everything we need to paint the walls and the apartment will be full of colors🙂 Luis will start to color the walls next week. After that my Dad had lunch with Luis and me, we stopped at a trailer where a Turkish guy sells chicken. After that we were looking for new sneakers for me because I have a mobility aid to stabilize my leg and it doesn’t fit in any of my tons of shoes that I have so I bought those sneakers:

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After that it was 5pm and I was already really exhausted and started again to become a little aggressive. Especially because I knew that my dad and Luis didn’t really felt like to go shoe-shopping with me and I tried several ones where the new thing didn’t fit. And the situation was hard for me too, because I wish I wouldn’t need any stabilizing for my leg at all. But at least I can walk a little with a Cain.
After that we finally arrived home. We rested a little but I couldn’t sleep. Then we watched a movie, that was really good and now we are just chilling. I’m zapping to see what’s on tv and Luis is watching videos on his computer.
I feel a little sad. It’s already september and I missed summer. We were planning to visit my family, that spent vacation on the lago maggiore,a lake in Italy, surrounded by beautiful mountains where I spent 4 days this year. But now summer is gone and I’m still in hospital. I miss sun and the beach and the salty air of the sea.
I also miss real food in the hospital. What they serve for lunch can not be called food, unless your an animal in the zoo. My favourite food in the hospital is vanilla pudding and cini minis (cereals with cinnamon), although this makes me even fatter. At least I will have enough weight for the transplant, although I look like I was doing a commercial for weight watchers now😦 everything has a good and a bad side… I don’t fit in any of my jeans anymore. I feel really uncomfortable with this weight and this fat legs, hips and belly… I really miss doing sports also. I’m also a little sad that I can’t help to move all my stuff to the new apartment, I know my family will help me, but they had to move my stuff in 2011 Already, because I was in coma at this time. I don’t feel comfortable with that but there’s nothing I can do about it. Now I’m going to get Luis away from his computer, so we spend this one day I have at home together… I wish you all a good night.

2 Responses to “38- Life goes on…”

  1. Mark W Says:

    Glad to hear that things are improving with your hand it must be so hard with the weakness you have been suffering.Really hope that things continue to improve. Thinking of you and wishing you all the best🙂

  2. ziaboga Says:

    hi dani, the first thing I want to tell you is I’m glad to hear you are improving little by little.
    I know recovery is hard and slow .is a great new you can open your fist.
    I know you’re as impatient as Me, but  you didn’t think you could be able to open your fist.
    things take time
    I know it’s easy to say you be patient, but anybody recovers soon from a stroke
    Maybe you cannot recover completely your left side but I’m sure you’ll be able to make many things at your own.
    luis and your family will be happy to help you so far.
    I’m aware you would like to be thinner but you know it’s very important to be strong for transplant.
    I understand you want a single room
    you need more privacy.
    I’m sure in your new apartment will be better, you’ll sleep next to luis , more privacy and more optimistic .
    all that will help your recovery.
    I’m lucky because I go to the beach all days in summer and I would wish you could go to the beach .
    I hope you can go a few days on holidays  with luis and family,
    I know the summer is over, but will encourage the change of place.
    Finally I wish and think you’ll get better and be transplanted as soon as be possible.
    I always tell , you deserve a normal life next to luis to enjoy the little moments that life give us.
    Yesterday you asked to me about my wife and Cf.
    Now I tell you she understands cf disease even better than my family.
    I think luis too .
    Many people will never understand CF.
    We are lucky because we have to luis and Marga , my wife, with us.
    They are a big fighters too
    kisses my friend and sister.
    Yeah I forgot tell you I like your nails and sneakers.
    we’ll stay in touch.


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