36- recovering from a stroke

September 3, 2012

I haven’t written anything for a very long time. Some of you maybe saw on twitter or Facebook what happened to me. But for those who don’t know I will write a little summery of my past few weeks…
I’ve been sent home from my cf hospital although I was still throwing up several times a day because of all the antibiotics I had to take because of the back infection. I enjoyed being home. I visited my uncle and grandparents. Often I wasn’t able to drive myself but
Lucky me I had somebody that could take me anywhere I wanted to go.
One day I felt worse than usually. I threw up about 30 times that day. My cousins girlfriend was about to sleep at my house the next day. But I sent her a message, telling her to stay home because I was too sick. I went to my doctor and after 3 hours of waiting and talking he sent me home with several infusions and injections against the vomiting. I felt horrible and Just wanted to sleep. My mum came over to take care for me. We cooked together and I even ate a little. Later I called my dad and my brother telling them how tired I was and I called my mum to tell her not to worry because I ate a little more. Later I sent a video to Luis, where I told him that i felt horrible and I was breathing very hard. Next thing I remember Is me on the intensive care unit and my sister, that told me I had a stroke. I didn’t remember anything so my family told me what happened: my dad went To pick me up for breakfast on Saturday morning, we wanted to test some cars which I was planning to buy. I just couldn’t decide which one I like best so we wanted to have a test drive with the ones I was thinking of. When daddy came into my apartment he found me in bed but I was completely out of my mind. I don’t remember it but my dad said I was kind of in panic and apathetic. He called a emergency doctor and an ambulance. The doctor noticed that I couldn’t move my leg so he thought something happened to my spine. Because of this he called a helicopter that took me to hospital. My dad got there by car. He stayed there on Icu with me for the first few days. My family took pictures of me when I was like this:

when they did a computer tomography they saw that three big parts of my brain were affected by a stroke. For the first days the brain was swelling, but I told the doctors that I didn’t want any surgery and no intubation. Neither resuscitation. My parents told the, the same and I thank them so much that they respected my wish although they didn’t know if this would cost my life. When I woke up I couldn’t really talk, I always repeated what others said but I wasn’t really able to find the words myself… I also couldn’t move my left arm or leg.i couldn’t hold my head myself either. Lucky me some of those things will recover again. But it needs so much time and I’m not really a patient patient. In hospital I had many visitors. My mum and dad came to see me as much as they could, and so did my sister. My two brothers came to see me, that made me really happy. My grandparents were there to see me, my aunt, uncle my two cousins and my younger cousin’s girlfriend, my friend Julia and her mum, my dad’s friend and my friend Nathalie was there every day, she even cleaned my ass after I took a shit-this is real friendship! Almost every day I stole her lunch but she never cared. I had horrible roommates (looks like I’ve always bad luck about this) so I was happy to get moved to a rehab hospital where I have several hours of therapies daily. We are trying to remind my brain how to move the arm and leg and to get rid of some other problems the stroke caused, for example, I can’t really concentrate anymore. I can’t see the left side. Or-well, I see it , because my eye is okay, but my brain doesn’t understand what I see. First I couldn’t even read, now I’m just crashing things on the left with my wheelchair always. But it’s getting better. I’m in rehab for three weeks now. When I got here I couldn’t even sit without falling, now I learned to stand again, to lift arm and leg a little and with a cast I can even walk a little. Although I’m still falling often. Without the cast my foot is just bending in awkward positions and the cast is supposed to protect the foot from breaking. The cast is purple, that’s the good thing about it 😉
The first week I had a roommate that couldnt talk. But at least I can move on my own a little. I never thought that being in a wheelchair will be that hard. All the things that are normal to us get so complicated when you are in a wheelchair… Every little stair is a hindrance… Right now I have a new roommate and she is so horrible. She is always complaining and moaning and she is snoring like crazy and I can’t sleep because of that. She is in bed almost around the clock so I never have some time to be alone. I don’t have any privacy at all. They don’t even leave me alone on the toilet to take a shit because they’re afraid I could fall. I’m so happy that luis comes to see me here every day. He takes me to the toilet then. I like this much better than when a nurse is next to me while sitting on the toilet. Luis also showers me every second day. The nurses here only help patients to take a shower once a week, and thats not enough for me. It’s summer and I don’t want to smell bad or to have greasy hair. Many people here really stink. There are mostly old patients here, only 3 younger persons. Well. People at my age usually dont have strokes. The doctors say that the vomiting caused dehydration and my blood became too thick and that this caused it. Because I’m not overweight, I don’t smoke, I don’t have high blood pressure. I’m a very unusual stroke patient. They say that most probably I’ll recover quicker than older patients. I can already sit alone, hold my head alone and move arm and leg a little. I learned to eat and dress with one hand. I’m still having problems with the bra and tshirt and it happens that I sit in the bathroom crying in the morning because I just cannot get dressed by myself. It’s really frustrating and sometimes I feel very desperate and helpless. I’m so glad that Luis is coming to see me every day, he gives me so much strength and I think without him I would have given up already. I have had hard times before, but this situation is really cruel. I won’t be able to live in the same apartment like before because I need to walk up stairs to get in and there Is no elevator in the house. The doors are too small for a wheelchair and the shower is also not ok for me. It has a little stair to step in also. I can’t get into my tub either. That makes me very sad, I used to take a hot Bath Almost every day. My whole life changes because of the stroke. I have to move, I can never dance again and dancing was my life. I hoped so bad to be able to dance again when I have new lungs… When I was in hospital they did an MRI to check the back infection and it’s gone. That’s the best news ever! They will do a biopsy to check if they find any bacteria and if not I can be transplanted. But the problem is, that I should be able to walk again, because I have to do sports to stay fit and they have to get me out of bed after the transplant to reduce the risk for pneumonia. So I’m trying to walk almost every day. And I cant wait till I finally can do everything on my own again. I cannot do the things I used to love anymore… I can’t really paint and draw anymore because it looks horrible. I can barely read anymore because i cant really see the left side. And for the same reason I’m not allowed to drive for 6 months. Thats like a punishment to me. Most probably I have to stay here for some more weeks but when I go home I will still need lots of help. We are trying to get a permission to stay and work for Luis. If not, he has to leave germany after three months and I think that this would ruin the little good part in my life that is still left. I would have to hire a person from poland to live with me and to take care of me. I really don’t want that! A stranger living with me 24/7? No way!!! And besides I dont want to be without Luis all the time. I want to live with him and fall asleep next to him. I miss to sleep next to him at the moment. I miss to hear his breath when I wake up at night and I miss to feel his warmth. It sucks that I’m always in a hospital when he is here.
But this weekend i was finally allowed to go home for one night. So Luis and my sister picked me up on Saturday morning and we went to the optic to look for new glasses for me. I hate to wear glasses but I can’t put in my contact lenses with only one hand 😦 I look so ugly with glasses but without them I’m almost blind. After that we went to see apartments that were built for people in wheelchairs. We saw two ones. The first was a little too small but the second one was perfect. Very big (for two persons), huge windows so lots of
Iight, a big kitchen and a garden, a big parking lot, a basement, lots of space outside, very close to all Important stores or shops like bakery’s,butcher, supermarket, Physio therapy office, pizzeria, cafe, bank etc. it’s closer to where my mum and sister live, they can be there in ten minutes if I need them. After that we went to my apartment, Luis and my sis helped me to get up the stairs, then my sister did lunch- pasta and salad, it was very delicious. After lunch mum and her went home and luis and me went to sleep, it was the first time since he came to germany that we were alone and so we cuddled a lot. It felt so good to sleep in his arms, I feel so nice and protected when I’m with him. In the evening my friend nathalie visited us and we watched a DVD and ordered food. Luis and I went to bed very late, but again i enjoyed sleeping next to him. We got up around 9 although we planned to sleep longer. Luis did breakfast and brought it to the bed, so I was eating in the bed. I can tell you, luis is such an angel! We had a relaxed morning, watching tv and talking, then we packed my things for hospital so we didn’t have to hurry later. Around 2pm two of my friends came to see me and we watched another DVD, my Physio therapist also can’t to see me and we talked for a while. At 5pm I had to go back to hospital, luis came with me and helped me to change clothes etc. it was a beautiful weekend and the break I really needed. I wish it wasnt over yet… Maybe i can go home again next weekend… Now I will watch navy cis, they show the new season, I can’t miss that! I will try to post something here daily , maybe not as long as today, but at least a little update about the day…


3 Responses to “36- recovering from a stroke”

  1. ziaboga Says:

    Hi dani. today I’m going to write in spanish because I can explain my feelings to you.
    Lo primero decir que hay que agradecer el esfuerzo que haces para escribir de nuevo en el blog.
    Yo ya conocía un poco lo que te había ocurrido.Le escribí un tweet a luis hace casi un mes y él muy amable me dijo que te estabas recuperando.Ahora cuando he leído tu post, me doy cuenta realmente de lo mal que lo has pasado.yo no se lo que es estar en silla de ruedas, tener paralizado parte de mi cuerpo, no poder ducharme solo, vestirme, leer etc y sobretodo estar en el hospital tanto tiempo sin un poco de intimidad.Es realmente terrible y entiendo que a veces te entren ganas de llorar.Afortunadamente te vas recuperando poco a poco y tienes un gran apoyo de Luis y toda tu familia.Como dices es fundamental que luis esté contigo el mayor tiempo posible y por ello espero tenga un trabajo cerca de ti y asì poder estar juntos.Yo te entiendo, y aunque no he pasado por esa situación, no sé que haría sin mi mujer junto a mi .
    Ya te he dicho muchas veces que no conozco a nadie que con solo 25 años haya superado todos esos obstáculos teniendo CF.
    Por eso te admiro tanto como persona y amiga.Además soy consciente del apoyo que das a mucha gente, y eso tiene también mucho valor Dani.
    Para terminar quiero decirte, aunque ya lo sabes, que tienes todo mi apoyo, que a veces no es suficiente y me gustaría
    poder liberarte de esa carga que llevas encima.
    Me alegra saber que tienes una estupenda familia que te apoya continuamente y a tu querido Luis que seguro es una excelente persona.
    Sé que a veces te dan ganas de abandonar, pero como sabes eso no ayudaría nada.Estoy convencido que con la ayuda de todos los que te rodean y con los que estamos en la distancia te recuperarás y serás transplantada.
    Siento haber sido tan pesado y escribir tanto pero tu lo mereces.
    Te mando mucha fuerza, ánimo ,valor y apoyo para que pronto me digas que estás recuperada.
    Mucha fuerza también a Luis y tu familia.
    Eres una gran persona Dani.

  2. Hola Dany, nunca abandones…eres fuerte y te doy animo desde Pamplona te mando tambien mi web para que no te aburras en esos largos dias de hospital. http://www.irilan.com aqui puedes ver el trabajo que realizo, yo tambien tengo fq, y estoy trasplantado. Se lo que estas pasando y te mando mucha fuerza para que en los momentos de flaqueza sigas en pie….UN ABRAZO

  3. Dani, I just caught up on what has been happening to you. I don’t even know what to say. I can’t imagine what it must feel like to be you right now. I wish so much that I knew something or could do something to make it better. I am angry that all I can do is send you love and hope that you heal. Words are not strong enough. I love you and I hope you never forget that you are a beautiful woman, even when you don’t feel like it. ❤

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