Part of the journey with PKD, at least in my case, is pain. There are all sorts of reasons for PKD related pain; there's pain related directly to expanding kidney cysts and bleeding into cysts, there's back pain related to a change in posture because of the enlarging cysts, and there's also nerve irritation from cysts. Then there's pain related to infection and pain related to kidney stone formation. And if that weren't enough, there's pain related to liver cysts that commonly develop in PKD patients.
So what causes my distress? I have no idea. They've tried test after test after test. But basically, we know something is pressing into something else ... and we know it hurts. I have medicine that will stop the hurt ... but that comes with it's own set of issues.
PKD also causes the kidneys to grow ... which presses against other organs. Which means it's difficult to eat these days. Hard to believe, I know, if you could see my size. But it's a vicious circle. I'm hungry all the time. But I can only eat a small bit. Which means I'm still hungry but my body hurts so I have to stop.
It's demoralizing ... to wake up feeling great ... and four hours later be hurting so bad all you want to do is go back to bed. What's the answer? I wish I knew. There are good days .. and there are bad days ... and you learn to embrace the good days.
Sadly, today is not a good day. But tomorrow may be ...
That planet Earth turns slowly
It's hard to say that I'd rather stay
Awake when I'm asleep
Cause everything is never as it seems
Owl City - Fireflies
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