Herz vor Bauch

Nachdem ich mich einige Monate optimistisch auf dem Weg nach oben dachte, meine neue Bucketlist verfasst habe und allen vorhandenen Diagnosen zum Trost Pläne gemacht habe, schmeißt mein Körper mal wieder den Anker und bremst von gefühlten 100 auf kurz vor Null, die Hoffnung endlich mal wieder zu dem Satz „du siehst doch gar nicht krank aus“ zu passen, zerplatzt mit 2 Sätzen..

Bis zu meinem Herz-Kontroll Termin letzte Woche hat die „ist nur eine vorübergehende Verschlechterung“ Gedanken-Taktik prima gewirkt. Dank Corona-Verzögerungen konnte ich mir sogar ein paar Wochen einbilden, meine parallel verlaufenden Unterbauchschmerzen und Übelkeit könnten mal in Ruhe untersucht und behandelt werde. Vielleicht was es das, was mein Herz überzeugt hat, dass es Zeit wird sich mal wieder wichtig zu machen. So heißt es: Ätsch Gallensteine und Kullerbauch ihr müsst warten.

Mit Auslesegerät auf dem Defi kann ich mein Glück kaum fassen, als der Vorzeige-Effekt tatsächlich außer Kraft gesetzt wird und eine Episode meines Herzrasen auf dem Monitor erscheint – denke ich zumindest. Bis mein Lieblings-Doc sich etwas kopfschüttelnd zu mir umdreht und Satz 1 raushaut: „alles klar, nun haben sie Flöhe und Läuse“. Das er damit nicht meinen Bauch und die bekannten Herzprobleme meint, sondern eine ganz neue zusätzliche Baustelle an meinem Herzen, sickert nur ganz langsam in mein Bewusstsein. Tatsächlich ist es auch keine Episode und Glück, sondern ein permanenter Zustand. Die von mir bemerkten und aufgezeichneten Episoden sind lediglich die Kurzschlüsse, wenn Flöhe und Läuse zusammen eine Party schmeißen und alles ganz außer Kontrolle gerät.

Die Frage nach dem Was genau und Warum werden hoffentlich bald mit einem stationären Klinik Aufenthalt geklärt werden können. Und natürlich die Therapie und Zukunft. Und auch wenn der Doc es sicher gut gemeint hat, Satz 2 „es wird sicher nicht so schlimm wie vor 10 Jahren“ hatte nur bedingt etwas beruhigendes und so wird positives Denken leider immer schwerer und das Beste was mir im Moment durch den Kopf geht ist tatsächlich „tolle Gelegenheit falsche Freunde auszusortieren“ was ja bekanntlich in schweren Zeiten besonders gut geht.

In den ruhigen Momenten, die ganz mir und meinen Gedanken gehören ist da gerade ungewohnt viel Angst, Mutlosigkeit und Frust und so sehr ich mir auch wünsche auf leichte Art aus meinem Leben zu plaudern und Euch von den tollen Dingen zu erzählen, die man als chronisch Kranker weiterhin erleben kann, muss ich mir heute mal eine Runde ausheulen gönnen. Ich denke dieses Gefühl „ich muss heute mal auf den Arm“ kennen wir alle. Und wer weiß, vielleicht hilft ja ein kollektives Daumen drücken besonders gut und ich muss die Bucketlist nur anpassen und nicht ganz verwerfen…


Thanks to my Colleagues

Monday morning is my „Smarties“ time.
I prepare my medication for the week.  Not as sweet but due to my boxes at least colorful 😉
And while I did it this morning I have had one of those Christmas moments.
A time to reflect and be grateful.
Sure my life would be easier and better if I wouldn’t need this medication but as it appears I wouldn’t have a life without! So I’m happy to have them.

I know that there are a lot of people who demonize pharma and medication – I get that reaction very often since I work for a pharma company and belong to several Health Communities. Unfortunately they concentrate on side effects or the rotten apples that appear in every business.
But I also know that there are millions of people depending on our developments that share my opinion.

Finally I’m proud to be part of a group that spends their time on helping others. To make a life of pain, shame or harm better. To protect people against worse times.
Sure there will be some that take it as every job they have to do to feed the family but most of us think about „how to make a life better“.

Usually I write my posts in German but as this should go out to all my colleagues and any person working in the pharma industry all over the world I decided to try an English one.
Thanks to everybody making my life and the life of our patients better. Have a Merry Christmas, a good time with family and friends and a very successful New Year

Day Zero

I’ve started a new journey – not one that I asked for, but life is not known as a walk in the park!

Many of us have experienced the loss of parents and actually I should be prepared a bit better. We have had so many conversations about how it should be, what she doesn’t want and what she would like. But in the end it catches me with my pants down and completely unexpected.

I am infinitely grateful that my mom was able to leave the world so quickly. And that she left on a day that by then was almost perfect. I was allowed to hold her hand, I could tell her how much I love her and that it is okay if she lets go. Unfortunately, I’m sure that she knows for sure that it was a lie when I said I could manage that mighty fine.
We just sat on the beach and planned our next vacation, we were happy to see how much easier it will be because she is now mobile on her own with her electric wheelchair. We terminated my hospital stay, which has now become necessary, draw up a shopping list of what she needs for sewing, what I should get for handicrafts. Clear mundane things …
Along the way we talked about emotional things, such as her fear of tripping hazards in the form of doorsteps or other people’s feet, about the stupid behavior of people who practice clan liabilty or only differ black and white. About the cautious steps as a single who has needs, about men in general, about her and my companions in life and those who pretend they want it to be …
Just about everything that a woman talks about with the one person who means everything to her and whom she blindly trusts (who is usually the BFF, we agree).

We bathe our feet in the cold Baltic Sea and enjoy how the feet dig into the sand and the biting feeling subsides, take pictures and she moans at me that I should kindly pull in the tiny rest of my belly …
At 3:25 pm she took the last photo of me, my cell phone tells me later.

Only a few minutes later I am alone with all the plans, lists and thoughts.
A few reflexes remain and the patient’s instructions, which are too old, cause the helpers to use all the rescue equipment and so I sit in the sand, hold her hand, talk to her and yet I know that her being will never come back, her soul already has left.

In the ambulance, on the way to the clinic, I keep catching myself thinking how she will shake her head or name people nuts when I later tell her about the idiots on the street who are unable to get their car out of the way when the siren sounds behind them.
My hope for a miracle is slowly fading, but I have 30 minutes up there on the front seat to remind myself that she disapeared out there in the sand and that it is only her body, forced to hang in until we reach the hospital.

At 5:45 pm the ICU doctor finally comes with the relieving words that it is over….
Ever since I’m going my way alone – of course not really, there are  many lovely people around, but…. Of course I keep talking to her and I think I’ll never stop, only that her answers will now come through my heart and not through my ears.

I will manage it Mum! Thank goodness there are enough idiots who annoy me, so much bureaucracy that makes me rotate and enough work, so I can’t feel long enough to let myself go. Whoever directs  this is so kind to put that amount of stones in my way that are needed to mobilize my reserves.
And eventually , when all these things are done, I have hopefully slightly learned that you will no longer be on the balcony when I come home or wait for my message when I drive somewhere, but still watch over me.

Actually I’m a person who can look back to many wonderful hours and who is grateful for everything that makes me who I am. So I’m not writing this because I’m looking for regret, but because I have to get it out – like every topic on my blog. And to reach out to others who experience it themselves.

But also to share the experience of what happens when you don’t have a patient provision. A current and valid one, Mums was unfortunately 2 years old!
Between the last picture and the moment the ICU doctor came to me there have been around 2 hours that Mum and I would have spared if we hadn’t postponed “writting it again” to “sufficient after vacation”. How many „please let her go“, „she does not want to depend on devices“ and similar sentences I could have saved after it was sure that she would never be the Brigitte again she wanted to be.
I trust that it was only her body and not her being that was there. The doctors assure me that she didn’t notice anything in the beach chair and I want to believe it, but the pictures of that 2 hours will certainly haunt me for a while and I can only recommend everyone to prevent this!

I like to thank those people who gave up their vacation day to help me. There were not only  rubber necks, there were actually strangers who immediately gave everything and apperantly sent by fate randomly to help me, so that I didn’t have to be alone on the roadside after I left the hospital. You’re right, it means something Kristina and I’m so grateful!
Even if it’s their job, I would like to thank the DLRG of Hohwacht! You pulled me away when it was necessary, looked after my Mum until the ambulance guys took over, you gave me all possible help and supported me beyond our drive off. People easily underestimate what you’re doing while they are enjoying themselves on the beach.

My heartfelt thank you, however, goes to several car drivers who thought that they don’t have to make room for an ambulance quickly and sufficiently that Sunday, September 3rd, 2017 around 4:15 pm to 4:45 pm between Hohwacht and Eutin! Without you, Mum might have arrived at the hospital so early that the resuscitation would have been successful and she would have been forced to hang on to equipment for a while!
I only regret that I prayed at the time instead of writing down car licenses – I would have loved to personally give probs to one or the other!