Update from fuerteventura

November 23, 2015

I haven’t posted for a long time but now i wanna reactivate my blog. I had a hard time dealing with the stroke problems but I think I can deal with it now more or less.
My best friend Julia moved in with me and it’s so great to live with her.

At the moment we are on vacation on a Spanish island called fuerteventura. It’s one of the Canary Islands. Today was our last day and tomorrow we will go back home.
I’ll finally get my dog back.

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Yeah, you read correctly- adrian and I adopted a puppy from the dog shelter. She was 6 months old when we got her. She’s from Ukraine and she was mistreated there and has mace horrible experiences in her life. She needed lots of time to trust us but now we are a perfect team.

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Adrian is still in hospital but he’s finally getting better.

I decided not to try to get on the waiting list for a transplant right now. Many of my friends died lately and I have so many other health problems that a transplant is too risky and will most probably kill me.

So I’ll just enjoy my life and hope that the cf will treat me nice in the next few years. I just try to enjoy every moment in life.

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Tomorrow we are going back to Germany and the day after tomorrow I will be admitted to hospital to have a port surgery. I’m so excited… NOT!

I’ll write more as soon as possible.
Hugs from Fuerteventura

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Long time no post.

Tuesday was my birthday and I turned f*cking 28. Might not sound old to some of you but if your doctors have been telling you for 10 years that you won’t have much time left to live, it feels pretty awesome.

Unfortunately still not all cfers reach that age. Only thinking of last year I can’t count the friends that died without reaching their 30ies, some never turned 20 and my little princess only got to live 8 years in this world before she passed after suffering a long time on ICU.

Last year I lost many of my really close friends.

In 2010 I was in coma and there was not even one doctor that had not given up on me. Even my family couldn’t really believe that I might make it. But I did. They had to amputate 3 fingers and 3 toes, but I lived. I needed a big heart surgery. But I lived.

In 2012 I was denied to get a transplant. They said I only had 6 months left and then I’d die. But I lived.

In July 2012 I had a stroke. It wasn’t sure if my body could handle the huge pressure in my brain. But I lived.

The doctors have given up on me so many times, i don’t really trust their prognosis anymore.

In 2015 I just wanna enjoy my life. Go on vacation and try to get my strength back. Right now my lungs don’t feel that bad. I think I can afford to take that break, that I need so bad. I will dedicate my time to Adrian and my close friends and family. I’ve spent too many months in hospital. I’m tired of it.

I wanna live with cf but in the last months and years I’ve been living for the cf- the disease controlled my life. My day plans are according to my therapy any treatments. I’m in hospital so often. Many times I must say “sorry I can’t” when I’m asked to meet with my friends.

I just wanna enjoy my life in 2015.
I wanna become 30 but to achieve that goal I need to be stronger than I’ve been lately. I noticed that I had more negative thoughts than ever before although my life isn’t that bad.

I have a car, a nice big apartment, a boyfriend that loves me, true friends that really care about me. I have enough money to buy whatever I need. But anyways-there’s something I’m missing.

I miss going to school or having a job… I don’t know. Well. It’s 1 in the morning right now and I should sleep. I’ll try to write more soon. Lots of things to do lately. But I’ll try to make some time to post an update.

Goodnight

Pics to think about

January 10, 2014

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Happy New Year!!!

January 1, 2014

I haven’t written for such a long time… Had many things going on, in august I had a sepsis and almost died of it, had a big operation that has given me an ugly scar- but hey, I’m still alive. My lung function is on 38% right now, almost 20% better than before the bronchitol. Right now I’m in Miami with Luis. I’m feeling so good, I reduced my pills and I hardly need oxygen during the days, only at night I really need it. I’m enjoying the easier breath so much! It’s so relaxing to be able to breathe and it’s like a dream to just breathe without thinking and without fighting. I’m living my dream. But my doctor is already telling me that my lungs will keep dying and that I need to get on the transplant list as soon as possible to have a chance to Live. He told me that in an email while I’m on vacation, saying I had 2-3 years left. So that’s my new year resolution, to get new lungs. I wanna live. I’ll try to write more often this year. I was just not ready last year. I’m sorry. I had too many things on my mind. I’ll stay in Miami until January 20th, then back to cold, unfriendly Germany 😦 I wish I could stay here. Yesterday I donated my money from Christmas to the cf research, imma do my part to find a cure and get us all out of this mess. I’m feeling very nervous right now. I’m on vacation why did the doctor have to tell me about the 2-3 years life expectancy now? Couldn’t it have waited? Damn. I’m afraid that a transplant could shorten my time on earth cause maybe not everything goes right or maybe I catch an infection. My mind is going 100 miles per hour. Anyways folks, I’m heading to bed now. Happy 2014 everybody!!! I’ve missed you guys! Thanks for all the incredible feedback you people are incredible! Will write more soon, goodnight now!

Luis left. I feel so numb and incredibly sad. It’s breaking my heart. I don’t want to be without him. In the afternoon this lady from TV will visit me. I will look like the world will end soon, sore eyes and swollen face from all the tears and crying. Will write another update in the evening.

Luis ist weg. Ich fühle mich so leer und gefühllos und unendlich traurig. Ich will nicht ohne ihn sein, es bricht mir das Herz. Heute Nachmittag wird mich die Reporterin von RTL besuchen. Ich werde aussehen als ob der Weltuntergang bevorsteht, wunde Augen und geschwollenes Gesicht vom heulen und all den Tränen… Ich werde heute Abend schreiben wie es gelaufen ist.

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.

I’ll never quit

October 29, 2012

It’s 8 in the morning now and I’m already on my way to the therapy. Yesterday we met a couple that found Luis’ lost phone, we invited them to eat and drink something, it was cool. On my way to therapy I can already see snow, but in the village where we live there’s only rain. Last week the weather was cool and we went for a walk almost every day. I enjoyed the fresh air and to see the blocks around the house.

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It was beautiful and I was very grateful that I’m still alive even when my life is full of pain and breathing trouble, full of things that I miss, that I can’t do anymore… But I still love my life. I have the best man I could ever imagine, I have my grandparents, my brothers, sister, aunt and uncle, cousins that support me. And there are still things in life that I can enjoy and that I love, even when my life isn’t like before. I’m fighting every day to get a little of my old life back, to recover a little. And I will never stop. Never ever. It was hard during the last months but it needs more to push me down so hard that I won’t get up anymore, I’ll always come back. Right now I’m listening to my music and watching the nature outside and I notice how beautiful this world is, and that I don’t want to leave this world yet. Even that the pain woke me up last night after 4 hours of sleep and didn’t let me fall asleep again. I’m tired and in pain but I’m ready for the next day where I fight to get my life back. The doctors told me, that in the first year after the stroke, my arm and leg won’t improve at all. But look at me now. I can walk a little although its insecure and looks weird but I’m walking. I can’t move my arm yet but I can open my fist and close it again, I can hold things a little. I didn’t give up although the doctors told me there wasn’t a chance for any improvement. But doctors are not almighty. They don’t know me, they don’t know my will. I’ll never give up. I won’t stop till I get my lungs. I’ll never quit.