Thoughts

February 9, 2014

Thoughts

Everybody thinks I’m so strong. The truth is: I’m not. I complain, I cry, I feel sorry for myself. I just don’t let people notice it or let the self-pity stop me.
Before the stroke I had a Bine marrow infection that gave me so much pain, that I wanted to die. I didn’t see the beautiful things I still had in life. Actually, it wasn’t much. But I had an incredible support system of friends, family and my partner. I had my beautiful apartment with my fishes in the garden, my dance crew, I had a life that I loved. But in that moment I wasn’t able to see that. I saw my pain, my problems and the things I could NOT do.

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Then the stroke happened. I don’t remember much. I went to bed, woke up on ICU, a doctor was asking me what they should do, because my brain was swelling which caused lots of pressure. She explained, that I had a stroke and that I’ll be half side paralyzed now. In this moment I didn’t really understand what this would mean for the rest of my life, but I told her, that I rather wanted to die than having my skull opened.

My brain magically stopped swelling. I didn’t die. I was transferred to a stroke unit after 1 week. I noticed, that I was in a way worse situation now. I couldn’t eat myself. I had to wear diapers. I couldn’t even sit with two people holding me. I thought I’d recover in some days.

After some weeks, I was transferred to a rehab clinic. They told me, that I’d never walk again or do anything with my left arm. I started to notice, how horrible life was now. I couldn’t shower myself. Couldn’t get dressed by myself. Couldn’t go to the toilet myself. I couldn’t pick my clothes from the closet myself because I couldn’t stand in front of it. I couldn’t even change position in my bed on my own. It was a nightmare. I started to realize that I won’t have my dance crew anymore, that I’ll never dance ever again. I had to give up my beloved apartment and move to a place, where I still don’t feel home after two years. I lost some persons that I really loved because they couldn’t deal with my new situation. I lost the ability to concentrate for a long time and to think as logically and quickly as before. I felt horrible.

In those times I was very close to giving up. If I’d have been alone in that rehab hospital, I’d have quit. But Luis went to Germany and helped me to get through this. I learned to stand, walk and even to move my arm a little.

Again I overcame what was supposed to be the end of my life. At the moment I’m doing ok, I went to Miami for a vacation with Luis. I am doing exercise to get parts of my fitness back. I found new persons, that care. But most important: I found a meaning in my life.

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I know I won’t ever dance again or walk as before. I know I gained too much weight due to the medicine and the time in bed and wheelchair. I’ll never be like before. But I’m alive. I wish I could turn back time, but I just can’t. So I’m sitting here, making the best out of gets I have left. The stroke destroyed me and pushed me at the same time. I can’t say that I love the way it is now. But I’m grateful for my recovery and all the help and support I got.

Right now, I’m not sure, where I wanna go and what I wanna do in life. In Miami, next to the ocean, my lungs were doing so incredibly well, I wish I could move there. I’d need a health care insurance, which seems to be very tricky in the USA. If I stay in Germany, I wanna apply for new lungs again and go back to school. I wanna do something, not just sit at home. I wanna make something out of my life, not waste my time.

If I learned one thing, it’s that time is precious and life is short. Every single thing that makes us smile deserves to be appreciated. I always said I value what I have. But now I know, I never valued the ability to walk to read or think. Those things were normal- even to me.

But things change…
Most probably I have more yesterdays than tomorrows. But now I really value every good minute, every step I take, every second in the sun. I have learned my lesson. It was tough, but I made it. And I think I’m stronger than ever.

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How to make life count

November 4, 2012

And it’s already Sunday again… What a week. On Monday and Tuesday I went to therapy till about 2pm, then I was exhausted. Luis cooked his super delicious spaghetti for me. They had a typical dominican sauce on it. Never had Dominican food before i tried the spaghetti the first time. We also went to the city to buy some gifts for Luis’ family in the USA. I still don’t like the fact that he leaves on Monday. The time without him is always horrible and heartbreaking. One of my best friends will live with me for the next 2 or 3 weeks. She moves in on Monday night. Tuesday evening we went to my doctor and he gave us the bad news that there’s an infection in my shoulder and that’s most probably the reason why I have so much pain in there. I wasn’t really amused about that but I think that’s normal. My back pain is getting worse too and I don’t know why. They still don’t know wether there’s a spine infection still or not. I’m still waiting for an appointment for the tests I have to get done. I hate that they’ll do it when Luis is in the USA because the tests are so incredibly painful. Last time the pain was so cruel that I was having the wish to die right away, just to end the pain. On Wednesday a d Thursday I had a fever and huge trouble breathing. That scared me a little, it was only a little fever- so what is going to happen if I catch a bad cold or flu? On Friday I was still sick, so again no therapy and no going out, we just went for a walk to the library in my wheelchair. Today in the morning we went to the city to go shopping, I bought books and I looked for things I could put on my wish list for Christmas. I’m hooked on books and DVDs, that’s how I spend most of my time because when I am lying down I can stand my pain. As soon as I try to walk, sit or just stand, the pain is killing me. In the afternoon I started reading one of the books I bought in the morning, then my mum and my stepfather visited us. In the evening we went to a show of a German comedian with my friends. We sat in the first row, right in front of the stage, thanks to my wheelchair. It was really funny and Luis even understood some of the jokes. I laughed a lot but my back was giving me more and more problems and at the end I could hardly sit anymore because of the pain.
Last week I talked to a lady that is doing reportages for one of the most famous tv channels in Germany. She wants to visit me with a camera team to tell people about my life with cystic fibrosis and the hope for a new life with new lungs. When we talked on the phone, she asked me about my biggest wish I told her without thinking for not even a second:”my biggest wish is to get new lungs and to breathe without thinking about it” but when I thought of it I noticed that right now my biggest wish is to be without pain for a while. Right now there’s no hour without pain. No night where I could sleep without waking up from the pain. It’s very exhausting. I’m a taking morphine pills but they don’t really help. The pain is still cruel and I can’t deny that I’m suffering from it a lot. It lowered the quality of my life a lot already. Just because there are many things I can’t do anymore just due to the pain. And the things I could still do- I can’t enjoy them like I did before. I just wish they would just disappear one day. On Monday the lady from tv will visit me in the afternoon. She asked if my parents, sister, best friends or brothers could be there so she could interview them. But my brothers have to go to school, my sister studies, dad works so I asked my mother if she would do it but she told me that its already hard enough to see her daughter suffering and dying slowly without talking about it and that she doesn’t want to talk about it with the lady because it would get all the emotions up again and would make it harder for her to handle things. So i think I have to accept that. My friends also can’t talk to her on Monday because the one that’s moving in with me has to work that day and my other friend is on Tenerife for vacation.
Tomorrow Luis and me will meet my cousin for lunch and Luis has to finish packing his stuff because on Monday at 8 in the morning we will have to go to the airport. Afterwards I’m planning to go buy groceries with my dad’s driver from work. I still can’t go on my own. I can’t drive my car and in the wheelchair I’m not able to push the shopping cart. Most things are too high up in the shelves anyway so it’s good to have someone talker with me.
In the afternoon the lady from tv will meet me and we will plan how we will do the reportage and when and discuss all the little details. Many people told me not to talk to this channel because they’ll try to make people to feel sorry for me. But the reason why I do it is, because I want to raise awareness. Germany is the country with the lowest amount organ donations in Western Europe. Only 18% of all Germans carry an organ donor card. 74% say they would donate but the law says that you need a donor card, so all the good intentions of the people don’t help if they don’t get a donor card, that proofs their will. Most people don’t want to think of their death or they just can’t imagine that they could die. Or some people are just too lazy to spend time with getting the card, what you could do online very easily. My hope is, that if my story touches the people that watch the reportage, they will maybe get a donor card. I want to inform people because many persibs here still have prejudices and stupid reasons for not getting a card. Fir example a week ago somebody told me, that she hasn’t gotten a card yet because she was mad at the doctor. Do you really think the doctor would care if you’re a donor or not? He isn’t the one suffering or dying. Every day three people in Germany die while waiting for an organ. That’s unbelievable. We don’t behave like we were a huge industry nation in the year 2012. My mother actually said that even if I did that and something would change because of my reportage and engagement, it wouldn’t change fast enough to save me. I told her that this isn’t the way I think. Even if it won’t help me it could maybe help all the cf kids that are young at the moment. I can’t just be complaining about people’s attitude and the laws without trying to change the situation. I might not be famous and I might not have billions of fans that listen to me. But anyways I try to do my part in all that. You don’t have to save the whole rainforest to make the world a little better. The world also gets a little better, if you just help an old lady carrying her bags up the stairs and listen to her stories. When you smile at people even if they look mad or stressed. If you wish the new cashier in the supermarket a great day and tell her to cheer up although she’s still working very slow and making many mistakes. Things start changing in little things. You have to go step by step. And I will try to do my best to improve the organ donation situation in Germany although I’m bit a superstar and although I don’t have any connections to German politicians or celebrities.
Another thing that got me very upset last week. A friend of mine did something very stupid and destroyed her best friend’s family by spreading bad rumors and lies. Of course everybody- including me- got mad. She started telling me, how cruel her life was, because she feels ugly, her ex boyfriend is a jerk, she had to quit school because she got pregnant when she was 16 years old, because of a lot of stupid reasons. I told her that I’d be so grateful to have a life like hers. A boyfriend is somebody you choose, if you fund out he’s an asshole, you could just make him your ex- boyfriend. Nobody forces you to stay with somebody. And how can you tell somebody who is fighting to survive every day tell that you hate your life because you’re ugly (she isn’t ugly, by the way.) i would rather be looking like hunchback of Notre Dame but be healthy instead of looking like a top model but dying young and suffering of pain and breathing trouble all the time. She complained that her kid was always crying. Girl, Nobody forced you to get this kid. We are in Germany, they sell condoms here, and if you don’t know how to use them we have doctors that could abort the embryo. Everybody usually knows that kids can be exhausting, babies cry, babies don’t care if it is 3am – when they’re hungry, they’re hungry. I would be so happy if I could get a baby. But I can’t even take care of myself, I couldn’t even hold the baby with my paralyzed arm and my 12 broken vertebras. My medicine and the continuous lack of oxygen the kid would be very disabled, but most probably neither I nor the baby would survive the pregnancy. And about the school she had to quit- why isn’t she just learning things at home like I did during all the years in high school? Having a baby doesn’t mean you have to stop doing everything, and as a matter of fact I know she still has time and power to go to parties and clubs, so why is there no strength for learning when the kid sleeps? I wish I had her life, being healthy, without this horrible pain around the clock, no breathing trouble and especially without dying young. Without knowing that every year it could be the last Christmas, the last birthday. And of course she doesn’t have to spend all this months in hospital. She doesn’t have to do six hours of therapy daily. She’s not taking 30 pills a day just to stay alive. I don’t understand how somebody can be so ignorant and ungrateful, how she can take all the things in life for granted, and how she can even think about telling her “cruel” story to somebody who is suffering every day, every hour and who will die soon if a donor won’t be found soon. I got mad about this girl and her attitude all week. I know I should just block her on all social networks and ignore her. As a matter of fact- I don’t know why I still read her messages, why I still answer her, why I still can’t believe what I’m reading. I should stop it. But on the other hand she shows me, how I can still appreciate my life and little nice things in life although my life in general is fucked up and us giving me such a hard time right now. It shows me, that if I keep fighting, there might be better times one day, where I can have all the things she has but doesn’t know how to worship. Meanwhile I am just feeling sorry for her and wonder, how ignorant and stupid people could be, while I still fight to survive and to get my lungs. I still value the little things I have in life. I’m thankful for having such great friends, for my family, for a nice subset or fresh morning air outside. I’m grateful fir hearing birds tweet, for reading a good book or eating delicious food. I’m happy when I see the sun shining or when I hear a song I like. I’m incredibly grateful fir every minute that I can spend with Luis. I’m thankful that I found the live of my life in him, even when we fight sometimes and have different opinions sometimes. I hope he comes back from America very very soon because when he’s not here I’m thinking of him around the clock anyways. I hope that all of you my readers know how to value the little things in life, that give us the beautiful moments that make life count. And to those, who don’t know how to be so grateful yet, I wish that they’ll learn soon, what counts in life and how to enjoy it to the fullest. Goodnight for now.

October 18, 2012

Very true. I’ll never give up, no matter how impossible it seems and how many doctors give up on me. I’ll keep fighting!!!
Ich werde niemals aufgeben, egal wie unmöglich es scheint und wieviele Ärzte mich aufgeben. Ich kämpfe weiter!!!

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Video

September 16, 2012

this is the video that my cousin and his girlfriend did for me. It’s in German but maybe some of you wanna watch it anyways 🙂

35- bored in hospital

July 15, 2012

Today is the 9th day of my hospital stay. They saw in the MRI that the inflammation in my back is still very big. I don’t know what they want to do about that because I haven’t talked to a specialist yet. It’s a little annoying that after 9 days nobody has talked to me yet.
I heard that they still don’t want to operate it. They want to wait 6 more weeks. But I don’t think anything will change in those 6 weeks and I don’t have time to wait anymore. I need to get on the transplant list and this won’t happen as long as my back is infected.
I am still throwing up several times a day. I get strong infusions against that. Usually they are used for cancer patients when they throw up while having their chemotherapy.
I still get 5 different antibiotics at the same time but none of them seems to work.
I’m watching movies and I read a lot, but I also just listen to music while daydreaming.
I imagine all the things I will do if I get my new lungs. I want to travel, to see the world. I want to run and dance and jump around.
Here it’s cold and rainy although it’s July. I wish I could fly to a sunny island. I miss beaches, the sea and the sun.
The nurses here are very nice, we talk a lot and have fun. But I miss home, I miss my family and my friends.
The doctors are afraid that I could catch a cold or a virus here so I will go home next week, most probably. But I still don’t know how everything will go on.
We need to get my back well so I can get on the transplant list and get new lungs. Right now it doesn’t look very good but I won’t give up. I just hope that somebody will have an idea how to help me.
Meanwhile I try to make the best of it. Today, one of my best friends will visit me. In the morning I was sending jokes to my stepson and laughed with him 🙂
He and Luis will come to Germany soon. I’m so happy about that 🙂

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Today is a better day. During the last weeks I was so much in pain and always feeling very sick. Today it’s a little better. Im so thankful for those hours, when I have less pain.
Now I’m sitting here in my bed, listening to buena vista social club and waiting for my friend 🙂
My cf- doctor told me that he was sorry that he couldn’t put me on the list. Well. It’s nice of him but doesn’t really help me. I’m happy that I found a hospital that will list me as soon as I get rid of the infection.
The doctors say, that they don’t think that the back will heal. But I won’t give up. I just try to stand the pain and wait till it goes away one day. And then I will get my lungs, I will recover and LIVE!!!!