Decided to go out of bed after staring to my nightstand for too long.

Just staring without thoughts or feelings. But clearly something is going through my head, otherwise I would be fast asleep at a time like this.


I got the results back from my bloodwork for my kidneys. I had a good feeling about it. I was nervous, but there was something we had to do earlier that day that caused way more stress, and that ended up alright. So I was convinced this would act as a good omen for my consult with the doctor. My breathing was still under control, didn’t have mayor sweat stains on my clothes, didn’t stutter out of stress…. everything was cool.


And weirdly enough I still stayed cool after the words she said right after our polite greet. The words you only say to a person who’s medical future doesn’t seem bright.


‘I’m sorry to say……’


The blood results came back negative. Worse still, if it keeps deteriorating at this rate, I will have a complete kidney failure within a year. And then I will need to dialyze. Nothing can be done about it, or can be given to stabilize it. The only option to stop destroying my kidneys any further than this, is to stop the intake of my medication for CPH. Which would mean, 280 seizures a day with excruciating pain 24/7, with kidneys working at less than 40%. Because what is already damaged can’t be cured.

This is something I have been warned about could/will happen in the future by the doctors from the LUMC, right from the start when I was diagnosed with this illness. I just always thought it would come to matter somewhere in the far future, far faaaaaaar away… not this near. Not within a years’ time….


Even writing down these words, still don’t make it real. I don’t know what’s wrong with me. Maybe it will hit me later. But for now, I still feel numb.

I called and texted my closest loved ones to tell them the news, and I stayed so clinical, distant even. When Ramon came home, he turned white after I repeated the words from the doctor, and without saying a word, one fat tear rolled down his cheek. After a few minutes of silence and a big hug, he said; ‘My worst fear in life is becoming a reality so much sooner than I always convinced myself.’

And even after his words…. It was still not kicking in for me, and so it seemed for Ramon.

Because when I hang up the phone after a friends call, when I came back to the living room, Ramon was crying his eyes out. Now it had hit him…. Hard.


That hit me. His hurt was huge. And that made me cry. And I couldn’t bring any soothing words. I just snuggled to his chest, and so we stayed for a while.

I went to bed, and woke up after Ramon came to bed. And since then, I have been staring at my nightstand.


Soon I will read up what will be in store for me, for us. What to expect. Three months from now I will do another blood test, to see how fast the deterioration is proceeding. I still have hope that it will slow down a bit. After that, I will ask my questions to the doctor.

For now I just want to enjoy life. Not think about what’s to come. Tomorrow, or today off course, seeing it is almost morning, is my neighbor’s birthday. I tippy toed down stairs to surprise her by hanging balloons at her door, for when she’s leaving for work. Celebrate life, love life. That’s what’s important. It felt good to inflate all those happy colorful balloons. Even if my neighbor doesn’t like the surprise, it was kind of therapeutic. It’s okay how I am not feeling the feels for now. When it comes, it comes, just don’t flag nor fail.