10 Apr, 2017

Soul-Striptease: My Way with Cystic Fibrosis

Cystic-fibrosis-my-way-travel
10 Apr, 2017

As a blogger, there are those articles every now and then, that you keep putting off. It’s not that you think it might not be important or the topic could be boring, it’s just that writing the article suddenly seems like this difficult and hardly surmountable obstacle. Therefore it took a while for me to get around writing it, especially because it’s such a damn personal topic. Today I want to tell you a little bit about my path with my illness, Cystic Fibrosis. I won’t be doing this very elaborately, because this would for sure go way beyond the scope of a normal blog post, but I do want to share my experiences with the disease and my greatest learning concerning this topic openly with you. Not just that: At the end of this blog post there will be a pretty big announcement, which I cannot wait to share with you!

So, here we go!

Lies den Blogpost auch auf Deutsch hier.

 

Soul-Striptease: My Way with Cystic Fibrosis

Back then, at the age of 2, I was diagnosed. After my health had been deteriorating for the first two years of my life- I was coughing all the time, vomiting a lot, I couldn’t keep any food inside me and I had recurring fevers- and the doctors had been telling my parents that they were sure it was whooping cough, a doctor in Idar-Oberstein finally detected that it could be Cystic Fibrosis. My parents had a sweat test done on me and the diagnosis was confirmed. This was extremely lucky, because at the time my lung function had dropped to about 20% and I had a severe pneumonia. Right away I was taken into the hospital and was given antibiotics intravenously.

In case you don’t know what Cystic Fibrosis is, because until then, my parents had also never heard of the disease, especially because at the time there was not that much information about CF out there, here is a small summary:

Cystic Fibrosis (or short, „CF“) is an inherited, genetic disorder that mainly affects the lungs, but also most of the other organs, as well. Due to a faulty gene the exchange between salt and water in the body doesn’t work properly. The result is that people with CF have problems breathing, they often have respiratory infections that can quickly lead to pneumonia. This means that many pills have to be swallowed, inhalants, exercise and IV-treatments have to be done regularly. People with CF, depending on the degree of severity, have lower lung functions and life expectancy currently lies at an average of about 35 to 40 years, which is considerably higher than at the time of my diagnosis. Moreover, some people need external oxygen supply, which is luckily not the case for me. The problem with Cystic Fibrosis is that a completely normal run-of-the-mill cold can turn into something worse pretty quickly and take an effect on the lungs.

Cystic-fibrosis-my-way-travel

Me as a little Buddha at the age of 3 at a clinic in Germany. And that is actually Christiane Herzog, the wife of the former president of Germany paying me a visit 😉

How it must have been for my parents to receive a message like that, I can’t image in the least bit. All I know is that the minority of people would have reacted the way my parents did: They read everything they could find about Cystic Fibrosis, they dove head-first into the topic, visited seminars, bombarded the doctors with questions and they never once doubted that they were going to enable me to live the best life possible. They consequently did all of the necessary breathing exercises and inhalants with me and went far beyond that. This wasn’t always easy as a child, using up so much „play-time“ to do all these exercises, but today I am so grateful to my parents for everything they have done that I cannot even put into words how much. I do not just owe my health and my life to them, but they were also able to plant in me their attitudes- my endurance, discipline and vigor I got from them.

Of course later in life there were some down-phases, health-wise and mentally: The rebellious stage during my youth in which I decided to ignore that I even had a disease and therefore just stopped caring about my therapy-measures for a while, the phase in which I realized that a shorter life expectancy influences the way we make decisions and how we look at the future and the other health-lows which were often results of nasty infections. But all in all, when things had gone down-hill, they always went up-hill again afterwards, because, as I later went on to learn, good times, just as bad, always pass.

When I then began traveling, I discovered an entirely new world. I fell madly in love with traveling, with our beautiful world, the differentness of cultures, the actual „moving from one place to the next“ and the beauty of the simple things. Especially the feeling of absolute freedom is what tempted me most and today it still has a magnetic appeal to me. Carrying nothing but your mere necessities on your back and going from place to place this way- that already is ultimate freedom to me. Traveling opened up new worlds for me and I don’t know how my life would had turned out had I not gone on that first trip so many years ago.

Today I know that I do not travel in spite of my illness, but because of it, because otherwise I might never have had the courage to aim for this life that I live today. To it I owe my life-affirming attitude, my will power and the bravery to do exactly the things that I fear most. And even though I have cursed this disease many times in the past, today I am incredibly thankful for it.

 

And now for the announced announcement.. 😉

 

I am so excited to let you know that this year I will be publishing my first book!! It will mainly be about my past travels, but also about my ups and downs with my disease and the learnings, that I have been able to collect from all this- I don’t want to reveal too much, so let’s leave it as vague as that for now. 😉

So, watch out on Facebook and on my blog to see when the book will be coming out and to find out more specifics about the book! I would be so happy for you to join me on this new and exciting journey, so stay tuned!

 

 

14 Comments:

  • Sara April 23, 2017

    Thank you for sharing your story. I love this line “Today I know that I do not travel in spite of my illness, but because of it, because otherwise I might never have had the courage to aim for this life that I live today.” That is such a great perspective and you are such an inspiring traveler! Good luck on your book! I will keep my eye out! I am also writing a book, based loosely off my travels and life, moving around continent to continent 🙂

    Reply

    • Denise April 23, 2017

      Sara, thank you so much for your kind words! That is really exciting and I wish you all the luck in the world for your book, as well 🙂

      Reply

  • Jackie Ronnell April 23, 2017

    My boyfriend’s brother also has cystic fibrosis. He’s in his late twenties and got a lung infection last year right before he was supposed to come to the States to visit my boyfriend and I from the Netherlands. I never really understood how serious it was until he got that infection, and was hospitalized for such a long time.. It took him months after being released from the hospital to even be able to start exercising again because his lungs needed so much time to recover (he could barely get up the stairs when he got home because he was so out of breath, and this is a fit guy in his twenties). Props to you for sharing your story, this disease is no joke and I feel like a lot of people (including myself up until a couple years ago) have no idea what it even is!

    Reply

    • Denise April 23, 2017

      Wow, Jackie, thank you so much for your comment and for your story, as well! It’s really rough to see how the disease can just knock you off your feet from one moment to the next. I really hope your boyfriend’s brother is getting better and he’ll be back to his old health soon! And it is true that many people don’t know much about the disease, especially because it is relatively “new” and research didn’t start until a few decades ago, but we are lucky to live in a time, where science is really speeding things up! Thanks again and best wishes to you and your family! 🙂

      Reply

  • Swati April 23, 2017

    You are one brave human and total respect for what you have achieved. Kudos to your parents for taking this chin up and turning you into the individual you have become

    Reply

    • Denise April 23, 2017

      That is so sweet of you to say, thank you! Especially writing this book I cannot get over how amazing my parents handled the situation.. Super grateful always <3

      Reply

  • Karin April 22, 2017

    Congrats to the book! You are a tough girl to deal with the illness like this. But I understand your feeling – I just broke my back and am strangely grateful for it, as it was a wake up call of sorts.

    Reply

    • Denise April 23, 2017

      Karin, that sounds horrifying and I’m really sorry to hear that! But as you say, things like these can really become a wake up call and might even get you to do things you might not have done otherwise 😉 Thank you for your kind words <3

      Reply

  • Ella April 10, 2017

    I’m so glad you ended up sharing your story with CF. There are loads of people who will be able to find inspiration in your story and I think living a life (and travelling!) with an illness is something that should be more talked about. Much respect. Also… Yay for publishing your first book! I’m excited for it to come out 🙂

    Reply

    • Denise April 11, 2017

      Ella, thank you so much for your comment <3 It isn't always easy to write or talk about, as you know, but I think the same: Talking about it will hopefully make more people talk about their own diseases 🙂 Thanks I can't wait for you to read it!

      Reply

  • Marjorie Mc Donald April 10, 2017

    You are amazing! I look forward to buying your book!❤

    Reply

    • Denise April 10, 2017

      Thank you so much <3 I can't wait to share it with you 🙂

      Reply

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