Friday, May 22, 2015

Stay postive

Hello everyone,

The last weeks are very hard. Thats the reason why I don't have written any blogpost.  I have a bad cough and ... I had a little trouble to stay positive. Just because everyone was saying;

  • Don't worry... it comes alright
  • There were things which are much worser
  • Don't give up,  life is so wonderful
  • Look at the lucky moments they are so beautiful
  • See what you can don't the impossibilities 
and yes... All of that is true... But sometimes you only want to hear... CF SUCKS! You don't want to hear how great you are... That you overwon so much....that its easy to do this because the mountains before are so much higher....NO... CF SUCKS! And thats also true...

There are wonderful researchers...wonderful steps to treat CF better... but at this moment is the treatment expensive and not yet everyone can use... Its a great step forward and I hope one day CF stands for cure found... but were not there yet....

What I learned again last weeks is...

  • Say whats in your mind
  • Its okay to admit you're feelings 
  • Its okay to say its hard at that moment
  • do not pretend you stronger
  • Believe in what you can 
  • Take the time you need
I was a little down because the little steps forward turned into a deep valley. I lost in a few days all what I won last months...fortunately it was only temporary but I don't came back on the niveau I had won... But I don't give up and fight again to win everything back and maybe more... 

Wednesday, March 4, 2015

Follow your heart...

That will lead you to your dreams...

Today is just one of those days when I realize that dreams can come true. If you fight and don't give up one day your dreams come true.

And of course not everyone will be a millionaire or can live in a castle. That arent the dreams I mean and talk about. I talk about our little dreams which can be true wishes. Don't give up your dreams! And yes of course not everything can be true but dreaming of your dreams can make you happy. Sometimes its better to dream about things than really had them. Just because the things are in dreams much better...

In the last years I had just a few dreams I think around the five. One of them was realize and be happy with the things I get. Its sounds easy but believe me nothing is harder than be proud of yourself and being lucky with your life. People always wants more and more and more.....

Today I realize I'll be satisfied with my life, my stuff, my friends and family. Just because its not taking for granted.... In everyones live nothing is taken for granted... every breath, every time with happiness, every moment just enjoy....everything is special.

Saturday, February 28, 2015

Reasons to be happy

Hi everyone,

Last night I realize how happy I am with the things im able to do. I started to make a list of thing who makes me happy.

  1. The sun is still shining 
  2. After bad moments there comes always good ones
  3. The support of my parents and friends
  4. The possibilities and changes I get
  5. Just the moments I lived
  6. I plannend a weekend with friends
  7. I'am happy because I can realize what I have 
  8. I'am able to breathe
  9. There are medicines who helps me
  10. The support from the foundation
  11. More and more people knowing about CF
  12. I take every change and moment to make it perfect
  13. The support of many other CFers
  14. The support of everyone who walks the great strides
  15. Just can walk outside and enjoyed what i've saw
  16. I can be positive and enjoy every moment 
  17. Just because I saw the little things
  18. The support messages I received 
  19. My moms cooking because its delicious 
  20. and many other reasons...

Just realize what you have and whats one you're way. Make the best of everything. Of course you may down but come out of it and go for the things who makes you happy! Life isn't always easy and sometimes really hard and sad but there are so many joyfully things. See them and make the best of you're life. Live for yourself because its you're own life no one can do it for you. Only you can make it perfect.

Don't wait for the perfect moment, take the moment and make it perfect!

Friday, February 27, 2015

Doctor visit

Hi everyone

This week I came on controle by my doctor. It isn't going well. I was thinking it was good enough but maybe I wouldn't see. I want to stay positive and have faith even when its a hard battle.

At this moment I listen to one of my favorite songs and try to sing with it. Be happy you can't hear it! I can't sing... but I loved to sing and playing guitar. The last weeks I wasn't able to playing guitar and follow my lessons because of my energy level.  I hope it soon gets better.

My doctor tells me about the resistant from the NTM for some antibiotics I get, the consequence were that it isn't able to go back on tablets in a few months. Thats meaning that the whole treatment during around the two years will be on intravenous antibiotics. Because of the resistant and how its going right now we planned a hospital stay in a few weeks. Maybe we switch some of the antibiotics but that hear I at a later moment. 

I don't want to going back to the hospital. I enjoyed the weeks at home so much. But I know its the best choice and I want to get better. Sometimes you must do things you don't like to be able to do more things you will do. Im thankful of the empathy of my doctor how he accept my choices. 
With the support of my parents, doctor and a few friends I go for it! 

Don't give up the fight at the hardest moments the sun will shine

Wednesday, February 25, 2015

Follow you're dreams

Hi everyone,

There are many reasons why you can follow you're dreams. Are sure that they are you're dreams and not the of others.

When I was younger I don't saw my own dreams. When I gets older I realize that the dreams of others  are not mine. I want to travel the world, See many places. I want to get a career. I want to be a doctor. I want to be a successful person and then I realize... Thats how others want to see me. I went on discovery and searching the things I want to realize.

At that moment I realize I want to be a successful writer. I want to be helping other people no matter the manner which. But mostly I wanted to be remembered. After long thinking I realize that I want to be successful because I was scared to be forgotten. It feels when I died young no one ever known who I am and especially I want to do something for the world. Make it a better place. Mean something for other people. And sure I don't want to be forgotten but thats no longer the reason.

One day I learned that helping others make me happy. Thats what I likes the most. Thats my dream realized I then!.... I want to help other people. I want to do something for the world. And I say it often but just again.... Take every moment to enjoy! cherish whats is precious. Take a moment to realize what are you're dreams...

Dreams come true just follow you're heart!

Sunday, February 22, 2015


Hi everyone,

The weekend is almost over I've enjoyed it... Sleeping much more hours than last week and do the things were I had previously no time for. My checklist is clearly now and it make me feel satisfied.

I probably sound lucky and positive on this blog... but its not always. Today I had a mental bad day. After coughing some blood I just realize the CF isn't under controle. After more than hundred liter IV antibiotics I'm still coughing. Before today I was thinking it was just the cold. Today the doubt begin. For just a cold its takes now too long.  It makes me restless for my visit to the doctor. But maybe I'm lucky and its better than... fingers crossed!

And this is just what I wanted to say... Having CF has the good and bad days. Staying positive is sometimes really hard and not the medicine. I lost other CF fighters with much more strength and fighting spirit who are always positive even at the end... but it wasn't enough to overwin the CF. Staying positive makes it sometimes easier to live with it but it doesn't heal the CF. Always is there the fight and always you must go one... even when you tired... even if you had just had a holiday and even when you want to give up. You have to fight... You have to do you're treatments and physiotherapy, have to sport, have to eat good, have to... Sometimes I say CF is just a life with a have to factor. Theres always something we have to do.

And yes its for ourself.

But what would you choose?
To eat what is good for you or eat what you like
Sport when you tired and out of breath or lying on you're bed
Do treatments or staying with you're friends
To be in the hospital or being home
To walk across the beach or arent able to do and sits at home
A night out or sitting at home on the couch
Visit the doctor or shopping in the city
Go to school or sitting at home

Living with CF means every day make choices. Whats good for you or what do you like? Sometimes its the same but often its different. At this moments you have to choose again and again. Sometimes it just feels like living CF or living your life. Choose whats the best for you're health is not always the best choice. The most choices have consequence if you not try to deny these, then you come quite far! Everyone have to make choices and deal with the consequence. But think carefully and use you're common sense.

Life isn't about the choices you make but the choices are the life you make

Wednesday, February 18, 2015

Just go one

Hi everyone,

The greatest journey you can make is the journey of you're life. Everyone has ups and downs and never the road is without any mountains. The mountains let you realize what you have and what you want to do. They are the strength to see were you are. Have faith in you're self and climb the mountains to enjoy the view upstairs.

Living with CF has many mountains and valleys. Every time when you climb the mountain you have to fall down. It requires perseverance. But CF is also the power to see what you have.
It makes me realize what life means for me. It makes me realize that nothing is taken for granted. CF let me sometimes almost give up but its even more commonly to fight.

This week I visit my doctor. I talked about how its going and he stimulates to not give up. To fight for what I want however my lungs are struggling. He let me know that it is fighting to stay alive is my strength and must continue. The controle was pleasant and its fine to talk about how I feel. Next week I must go back and then they take some blood and other controls. Although I am not totally fit, I'm happy with how it goes. In recent years I have not been so long out of the hospital. And yes it is with a lot of extra IV antibiotics and medication but I'm at home! I enjoyed every moment.....

Don't count the days, make the days count!

Monday, February 16, 2015

Stay positive

Hi everyone,

Every day I hear it a few times. How can you be so positive? Every time I answer the same. I loved my life, I love the changes I get and love to do what Im doing.

Yes, every day is a fight but that isn't meaning Im not able to enjoy. Especially the last few years I learned to see the little things who makes me happy. The things I've never seen before. Im happy when I wake up and the sun is shining. Im happy when Im able to do dress myself. Im happy when im gain weight and when I look at the people who loved me.... Im so happy!

Having CF doesn't mean you can't enjoy of life... I think we more enjoyed life because we learn early that nothing is taken for granted.

To day I woke up with a bad cough, one moment I was upset about it. A moment later I understand its just the mist outside. Since I was young my lungs don't resist much incentives. They respond quickly asthmatic. I took my nebulizer what was really a relief. The rest of the day gets better. The nebulizers taking much time every day but I need them. I often look beauty videos at youtube for some distraction. After doing my treatments im starting with some breathing exercises. The daily routine of most CFers. Day in day out we never can take a holiday from it.

Im lucky with my treatments they let me feeling well. Yes its taking a lot time and sometimes its hard to do everything but most of the time its just daily routine like brush my teeth. Today after my morning routine were going to the city. We bought some make up and clothes. I also bought a new photo list for on my wall. With my mom I chose nice pictures and my dad put the list on the wall. The result is amazing and im liking it !! Im so happy with the new list. Thank you so much mom and dad!

Later this day I received a message from my doctor. Later this week were going to visit for a controle of my lungs how they doing it on the treatments.  I'm hopeful its getting well and after the cold my lungs getting slowly better. Hopefully my doctor is satisfied.

Hope is the start to make things better...

Saturday, February 14, 2015

Happy Valentine

Hi everyone,

Happy valentines day!

Not everyone has a boy- or girl-friend. Not everyone has the privilege to be loved by someone. Maybe are you one of them who needs some loving words. Maybe are you the one who feeling more lonely than other days especially at days as this.

Im great full of the supporters of me... the ones who love me. The ones who take care off me. I will thanks everyone who supported me the last week, month and years... without them I possibly gave up this fight. But I fight not alone, I fight with everyone who loves me.

Valentines Day is a day to stand still by the moments of happiness. This is a day to thanks everyone who loves you. This is the day to understands its special to have someone who love you. And even special is it when you loves someone. Just breathe in and realize that loving each other is a gift of strength. Together we stand strong!

You don't have to fight alone,  Together were stronger! 

Tuesday, February 10, 2015

Sick again

Hi everyone

The battle is back again. Friday I woke up with fever, no air and very tired. One moment I thinking to sign my doctor but than I realize thats meaning going back to the hospital. So I want to try getting better on my own strength.

The night was horrible because I was so short of breath and coughing a lot. My mom takes care of me and I tried to sleep so much as can. The fever getting higher and I fall finally in sleep. I was so happy with my non invasive ventilator it gives me some air and let my breathing calm down. My heart rage was very high and I was afraid that I must call my doctor...

But it all comes allright. Now my fever is lower... I get some energy back and started to gain weight again. I have just my air back in rest when I tried to walk I will start coughing but thats taking time to recover. But I think that with the good cares of my mom I will survive this cold without going to the hospital... for the first time in years!

Im still getting better... It takes time to recover complete from this cold but I think it comes allright without hospitalization. Thanks mom for the good cares!

Never give up theres always a little hope.