cmdreamer

“There is no greater agony than bearing an untold story inside you.” – Maya Angelou

I won’t lie and say that being this vulnerable is anything short of terrifying. I have social anxiety so putting myself out there like this isn’t a familiar feeling. But, I have benefited from hearing about other’s stories. Their loss and hardships became beacons of light for me. Reminders of the good that co-exists (sometimes invisibly) with the bad. So, to anyone who thinks this is worth a read, I hope you get something positive out of it.

I am 24 years-old with a foley catheter bag attached to my leg. 

From the moment I exited my mother’s uterus, my bladder has been the main character in my story. I suffered from recurring UTIs when I was a child that landed me in my first urologist’s exam room. What started as constant stinging when I urinated became a searing pain in my lower back. I remember feeling like someone had taken a knife and stabbed me. 

The UTI started its move from my urinary tract to my kidneys. At the age of 6, the health of my kidneys consumed my every thought, and losing them became my worst fear.

The severity and frequency of these UTIs were concerning and confusing for the doctors. They needed more information so they performed a cystoscopy. A cystoscopy is when they insert a camera attached to a thin tube in someone’s urethra so they can get an inside visualization of the bladder. It is just as uncomfortable as it sounds. 

However, for a child with no understanding of what is happening and a urethral/bladder issue that is causing severe pain the procedure was torture. I was awake the entire time but it’s a memory that lives more in my body than my mind. I can’t see or hear anything when I think about it, but I can feel it. I can feel the fear and the pain. I can feel hands on my arms and legs to keep me from moving around. I can feel the sterile swabs against my urethra. I can feel the stinging become a ripping. I can feel the hot tears rolling down my face. I can feel the soreness in my throat from screaming. 

And lastly, I can feel the humiliation of being told that I can’t use the bathroom because “that’s what the bedpan is for.” Asking for the bathroom had been my escape plan. It’s funny how I saw it as a way to relieve the pain when it was the reason I was there in the first place. 

Even as a child, I understood the concept of dignity so I held it. Whether it was hubris or pure stubbornness, I realized at that moment, I was pretty good at holding it when I needed to. I didn’t know how harmful that would become later on. 

They sent me home with the lovely promise of a life full of UTIs, antibiotics, and long bathroom visits. Exactly what every mother wants to hear after seeing their child writhing in pain on an exam room table. At least my kidneys looked healthy. 

I had a new regiment of cranberry pills twice a day, frequent bathroom visits, and lots of water. Eventually the UTIs fizzled out and I stopped experiencing them which was a relief because that’s what the doctors told us was their only concern. Since the doctors gave my mom no answers, I promised to tell her if anything changed.

Well, something changed. I just don’t know when it happened. It might have been when my first grade teacher told me I couldn’t use the bathroom and I cried because I was scared my kidneys might become infected. It might have been when my anxiety started to appear in my life and made me more aware of the fact that I pee slower than the average person. It might have been when I got my period and everything got a bit more crowded with the new bloating situation. It might have been when my body started to reject dairy products so much that I felt sick any time I ate them.

I can speculate for the rest of my life about what changed and I can shame myself into a spiral but what good does that really do? Because I am here now, with a diagnosis that doesn’t disappear just because I find the reason as to why it all happened in the first place. And don’t get me wrong, I’d love to be so calm and understanding with myself all the time but I do trip up and find my mind wandering to dark places. Thankfully, I have an amazing support system that doesn’t let those thoughts settle in.

Now that we’re all caught up – I have a distended/enlarged bladder. Somewhere along the way, my bladder started to get used to holding urine at abnormally large capacities. My bladder is an overachiever like me.

In all seriousness, this is not a good thing. The last time my bladder was left to its own devices, I was holding a LITER of urine in my bladder and I was COMFORTABLE. It felt like a good day for me until I saw the faces of the doctors. It was not a good day for me. 

That’s when Jean-Ralphio entered my life. I named him after that one character from Parks and Rec who is hilarious but also a pain in the ass. I truly feel like that’s the perfect name for my foley catheter. He is both a blessing and a curse; a complete contradiction which seems to be a common theme in my life because…

I am 24 years old with a foley catheter bag attached to my leg. 

*Disclaimer: I am NOT a doctor. Everything in this blog is my own experience*