Familienbesuch bei Kanze
"steriler" Arbeitsplatz in Kenia
Rumänien 2016
in der Schulküche
1. internationale Wilkie-Treffen 2015
auf der Farm in Kenia
Alltag mit dem Infusionsrucksack
Spiel und Spaß

Der Rollstuhl ist seit sechs Wochen mein Fortbewegungsmittel. Für kurze Strecken gehe ich mit Krücken. Davon schmerzen aber schnell meine Handgelenke und mein Rücken. Apropos Rücken: Die Schmerzen in den Facettengelenken der Brustwirbelsäule wurden durch das Krückengehen unerträglich. Die letzten Wochen schränkte mich das notwendige Opiat sehr ein. Benommenheit, Müdigkeit und Übelkeit kamen noch dazu. Erst die Denervierung (Verödung) von acht Nerven in den Facettengelenken brachte Schmerzfreiheit. 

Genau bevor ich einen Termin für eine Denervierung bekam, musste ich eine Reise nach Norddeutschland (Cloppenburg) antreten. Mit im Gepäck waren starke Schmerzmittel und Mittel gegen die Nebenwirkungen und natürlich auch der Rollstuhl. Mit ihm war ich im Bildungshaus, in dem ich das Kamillusforum besuchte selbstständig. Lediglich die Nasszelle war so klein, dass gerade der Rollstuhl Platz hatte. Umdrehen war da nicht mehr drin. Dennoch schaffte ich es Dank meiner Kreativität, dass ich auch in die Dusche kam. 

In zwei Wochen muss/darf ich zum weltweiten Treffen der kamillianischen Familien nach Rom fahren. Ich hoffe so sehr, dass ich bis dahin schmerzfrei belasten kann und darf. Aber ich denke, dass auch da so oder so der Rollstuhl mit muss. Nach sechs Wochen ist mein Bein jetzt schon nur mehr Pudding. Da werde ich selbst in zwei Wochen noch keine längeren Strecken zurück legen können. 

What's behind the scenes,

which often do not want to know the people.

I would like today give an insight,

in the behind-the-scenes life.


In everyday life, I have to be on stage

and am seen by many people.

"You look good! Are you okay?

I see your strength and your courage! "

Dear people, if you would know,

what is behind the scenes!


To bundle energy I'm good,

sees every woman and every man.

What they do not see is the time,

in which even difficult to walk.

when I'm so tired and exhausted,

that sometimes I fall down.


But that's behind the scenes

and do not know the people,

I am having a few hundred calories a day

not enough of energy for the stage.

And three quarters of a liter in the sun

brings the body not in delight.


The do not know the people,

because that's all behind the scenes,

that now and then I simply can not be on stage.

The fact that I for days'm gone,

and most of the time in bed.


But that's behind the scenes,

and do not know the people.

If I jazz me up with artificial nutrition

with glucose, carbohydrates and fat,

and the body enough liquid has

with an infusion of Ringer's lactate.


You look great. I see it in you!

What know the women, what the man?

What is behind the scenes?

I think they would not like to know.


It was hard to coordinate the appointment with the specialist and the date for the Wilkie meeting. Ultimately I had to depend on Prof. Sandmann, who goes in holiday in the middle of August. Later, I can not go to Germany. At least it's difficult because the holidays are over. Unfortunately, some Wilkie had apologize to the meeting because her physical condition was not so good to make a trip. Finally we planned a meeting with four persons. One apologized shortly so we were we were three plus two members. Although we already knew us more than a year, have gone together through ups and downs, the exchange brought new (shared) experiences. I am very grateful for this hours in Bielefeld.

Recently I could compare notes with Prof. Sandmann in St. Elizabeth hospital in Volkmarsen on his research about SMAS-syndrome. His interdisciplinary work does not have any concrete results, but very good approaches. It is widely assumed that at least in a subset of patients, the reduced angle of departure is a result of weight loss. This in turn is caused by the problems in food intake. One suspects that this could be an undiagnosed congenital (nervous?)disease in the intestine.

Many doctors are unfortunately convinced that our complaints are "only" psychosomatic complaints  and negate the Wilkie's syndrome. Perhaps this may be true on one or the other patients, but the majority only gets psychological problems because they are not taken seriously. A psychological support may lead to an improvement in the mental state. Many patients feel even a personal ordeal. If it is a good psychologist, he will encourage patients - if necessary -  not to give up the search for the physical cause of the complaints.

Our Whatsapp group is growing. We are now 17 members from 4 different European countries. The exchange is very important. We can support, encourage and advise each other. I am very pleased with this modern technology. So good it is to have an exchange of messages and to show the feelings with the help of icons, a personal interview cannot be replaced. Particularly desperate patients I offer a telephone call. And it is whatsapp again that allows me a telephone conversation with England or Switzerland. Making calls is good, but can not replaced by a meeting face to face. So the request was for an international meeting. Unfortunately, a scheduling for people who are not doing well and coming from so many directions is not easy. For me, a meeting is also connected to a long journey, because the most of our members are at home in Germany. I combine the meeting and the journey naturally with an appointment with Prof. Sandmann.