December 30, 2018
Dear Ones,
… well, I wrote a really long post the day before yesterday ….. and then the site crashed! That was bitter! And so you read something about me today.
Year. Not to be confused with menopause;) Menopause is particularly stressful this year, someone told me recently. Nice! Moments that I love :)) He meant the turn of the year.
The year ends. For me, this is always a good moment to review the old year. I always like to do that, that’s important.
Normally I stand each year somewhere at 00 o’clock with a glass of sparkling wine st and stumble on the “new” on the “unknown” – I wonder then what the new year will bring. And so I always try to change the year with a good feeling and to start consciously with positive energy.
The next year will not be so unknown to me, it is planned. And it will be a very, very special year for me …
This year started for me in France. It was a nice holiday, even if I would have liked to go on longer walks. I love the French cuisine, which is amazing! I am always fascinated: the French do not cook, they literally write.
In April / May I was in India, not for the first time. And again I went there to food poisoning. This time, however, unfortunately so complicated that I had to leave prematurely after a hospital stay in Kuala Lumpur / Malaysia. That was exactly one year before my upcoming stay in Moscow. Will that tell me something? No idea. All I know is that I was really impressed by the clinic in Kuala Lumpur. Compared to our clinics here in Germany, this seemed much more organized there. And very modern! Maybe this experience then in retrospect additionally influenced my decision for Moscow – simply because here in Germany not all gold is glittering and unknown countries can positively surprise in this regard.
The summer was hot this year. Heat is difficult for the MS, because the already limited nerve conduction velocity is then even slower. I did not manage the little laps with Miko either, that did not improve in the fall either. So for the first time I looked for a wheelchair. That is hard. It starts, I thought. This neck threat does not sleep. The MS never sleeps, they say. My MS seemed wide awake, now I googled for aids. Finally, I decided to go for a Segway. With the Segway, I can make friends much better, even if I find these things somehow strange and I like the classic walks on foot still best. After all, I’m so around the wheelchair;)
Sometimes I am asked what it feels like to lose power over my legs. That’s difficult to describe, I choose pictures for that. At first it was like running on sand. Like on the beach, when your feet sink in and you have to work hard to put one leg in front of the other. It’s like I’m in the mud now. I go, but not so far – fighting through the knee-high mud is exhausting. Then I have to pause, because I lack the strength in the legs. They also begin to hurt and cramp. At some point I lift the movement from the hip, which is not very pleasant. At the same time, this mud never completely dissipates, even when resting. The legs are always a bit heavier than they should be and the pain remains constant, just bearable.
All in all a condition that is not fun in the long run. Above all, if you think: from now on it can only get better – nothing, from now on it’s only worse. And honestly, where should this lead? The MS sneaks … but she does not sleep. If I’m lucky, she sneaks slowly. I do not have it. I’m 36 and google for wheelchairs, where I was supposed to google for high heels.
So. And then I learned that Switzerland allows standard studies for stem cell transplantation in MS, which pays the local health insurance. That was like a slap in the face. Wake up!!
The risks of MS are predictable and bad for me. I’m aware of the risks of stem cell transplantation and willing to trade it for the risks of MS. It is a chance!
After I made that decision, everything went really fast. I asked in Switzerland, a short time later I asked in Moscow. I said goodbye to Switzerland and chose Moscow. Then I designed this website here and this blog I’m writing on – THANK you, Christian Wulsch, for helping me and helping! In so many! Only yesterday Christian has explained to me the immune system again;) At least what’s known about it. I always have a lot of questions and I like to think. If someone happens to be reading this, who is interested in research, I have a lot of concrete ideas 🤩 and more questions (… that’s for the most part, of course, fun.) To the biggest, not to the whole! 😉)
When I had roughly created the website, the task of the flyer came. And so much else. And suddenly it seemed like a huge mountain, hard to get over. And at that moment, my dear and very special friend Evelyn Lo Schiavo contacted me and called me for a coffee in my favorite restaurant and second living room Artemoda / La deutsche Vita. When I came over, she sat there with a book and a pen: “Katja, we’re starting to work right now, I have some suggestions and maybe they like you, maybe not …” – And then we started. And as I’ve written here before, Evelyn and I worked wonderfully together. Almost without words she put my feeling on paper. It was clear that we needed photos. That’s when I remembered Sebastian Lapke, who provided me with a few hours at short notice. And so everything came into being … And suddenly my flyer was already on Facebook and was diligently shared – Then came the first donations. As well as the first news, many, many positive and loving messages! This is and remains for me an indescribable and wonderful experience, such a valuable experience! You are the people who accompany and support me. Although we hardly know each other or even not, you are part of my special journey! You are the ones who pave this path for me …
After exactly six weeks, we got 37,000 euros together !! Soooo many people have supported me, I have nothing more than a THANK YOU for it. It’s a HEART THANK YOU, the biggest thank you you can think. Because you allow me this great and significant opportunity for life!
And so I’m standing here just before the new year … you’re also out there somewhere, on your cell phones and computers, reading these lines … It’s beautiful, beautiful, that we’re going to move on together in a different way this year , I will not toast with a glass of sparkling wine at 00 o’clock, but with a glass of champagne 🥂✨ Many thanks to Petra Robok for this fitting present! “I wanted to pick it up until I got the € 50,000 full, but I think it’s more effective and significant to start the New Year!
✨I wish you a good and beautiful start to a new year! ✨🌠
✨✨💃🏼🥂✨✨
My HEART THANKS go to all these many dear supporters, who pave my way also at the turn of the year.
A friend of my mom, Biggi has made this really so pretty gift for me together with her colleagues from the dorm St.Kunigunde in Paderborn.
Many, many HEART THANKS for your steady, tireless presence and support!
- Conny&Otto Trapp
- Sandra Anonym
- Thomas Lindner
- Christin Kotthoff
- Katja Anger
- Svenja Berners
- Irmgard&Karl-Heinz Poppert
- Sina Senßfelder
- Volker Krichbaum
- Dirk Oberling
- Steffi Reitzammer
- Maike Latarius
- Vanessa Anonym
- Julia John
- Katy Marin
- Nadine Theis
- Annika Anonym
- Franziska Schuster
- Sabine Reimund
- Monika&Wolfgang Hoffmann
- Andreas Strauch
- Herbert Töws
- Azize Fluck/Rainer Weilbächer
- Silvia&Frank-Wilhelm Stenmanns
- Gitta Gerhardt
- Daniela Anonym
- Katharina Tluczynski
- Julia Anonym
- Clara Anonym
- Sina Anonym
- Theresa Anonym
- Veronika Lampe
- Melani Anonym
- Fahira Anonym
- Nina Garnatz
- Rebecca Anonym
- Linda Anonym
- Michaela Anonym
- Florian Schönberger
- Annika Fröhlich
- Mona Anonym
- Svenja Anonym
- Tamara Sommer