Another week in the life of a cystinuric

It's a matter of not surrending. It's a matter of not admitting that this horrible disease is sucking my whole life out of me. 
I cannot work, I cannot enjoy being out because of the fear of the unpredictable pain, I am soaked in fear. 
I hate the person I am now. I do not resemble to the person I used to be. After three surgeries, uncountable infections, stents, pain killers and every possible kind of medicine, doctors, urologists, nephrologists, it is getting harder and harder to go on.
If I could put on a scale all the pain I have been through since I was a kid, it would explode. And the worst thing is that there is no reward. You won't get any prize for being strong. And asking "Why me?" is totally pointless. It won't go away.
The only thing you can think about is the pain to stop. Nothing else. There is no energy or space for anything else. Nobody deserves something like this. Nobody.