I was first diagnosed a few months after my daughter was born. What I thought was a simple UTI moved up through my bladder, up my ureters, and settled in my kidney. I've felt them ever since. It's a weird sensation knowing where your kidneys are at all times, feeling like there's a knife stuck in your back and any movement or pressure changes the pain. Sometimes it's tiny pricks like 30 needles in my side; other times it's a butcher knife twisting and stabbing. Sometimes pressure helps, like when you hold a wound, and other times the slightest touch brings me to my knees.
The painkillers allow me to function, but the pain never stops. I've been in pain almost two years. I've had surgery, new diets, too many pills to count, multiple 24-hour urine tests, and doctor appointments that feel like a part-time job. Nothing has truly helped.
I'm faced with the possibility/probability of a lifetime spent in pain. I used to imagine my future, 10, 20, even 50 years from now. Now that is too overwhelming. It's a good day when I imagine next month.
I never imagined I would get sick. I would not wish chronic/constant pain on my worst enemy. But I'm trying to live with it as best as I can. I have doctors who believe me and want to help, a loving husband who is by my side every single step of the way, friends and family who are happy to help whenever I need them, which is a lot, and an online community of amazing people who share my disease and provide support and answers I can't get anywhere else.
I hate being sick, but having a support system makes it bearable. On the days I'm not sure I'll make it 20 minutes let alone the next 20 years, I know I have people who want to help me. And I love them for it.
P.S. That got sappier than I was expecting. Apparently broken kidneys make me wax poetic about how hastag blessed I am.
â¤ï¸ I totally understand. It's the worse when people say "but you look normal"... ugh!