I couldn’t go to the bathroom, I told the nurse. I’m sorry, I can’t give you a urine sample.
It’s okay, she said.
I writhed on the exam table in pain as she performed the pelvic exam instead. I gripped at the sanitary paper and fought back the tears. Interstitial cystitis she said, at least I think so. You’ll have to go to a specialist.
I went home with some medicine to help me urinate, and a new phrase to spend hours researching on WebMD. I made an appointment with the gynecologist. We can see you in month. It was my only choice, so I waited.
A month I waited in pain. A month to convince myself I did not have this disease.
Interstitial Cystitis, the gynecologist said, as she put her hand on my shoulder. This time I couldn’t fight back the tears. I listened to words like “incurable” and “chronic” and “no reliable treatment.” This is not what I had wanted to hear. I wanted to hear I had a routine UTI, take a week of antibiotics and you’ll be fine. I wanted to hear I had an ovarian cyst, must operate immediately but you’ll be fine.
I wanted to hear you’ll be fine.
More doctors, more research, more reality hit home in the weeks to follow. But I couldn’t accept it.
I wasn’t chronically ill. The chronically ill were the people we prayed for in church each week without giving them a second thought. I wasn’t someone with an incurable disease. I was 24 with a brand new husband, 2 more years to go before I finished my Master’s degree and could start a career in earnest. People with incurable diseases were either shut-in recluses with lots of cats or shiny, brave, conquering moms on the cover of Reader’s Digest. Such an inspiration to us all. But that wasn’t me. I was just a healthy, normal 20 something who just had always had to pee a lot and had been having some weird unexplained pain for the last few weeks.
Time for a new diet. No coffee, no beer, no chocolate, no wine, no alcohol of any kind, no carbonated drinks, no oranges, bananas, strawberries, no to most fruits, no hazelnuts and walnuts and pecans, no tomatoes or anything with tomatoes, no processed meats, definitely nothing spicy. No tea, no raw onions, no soy, no vinegar, no mayonnaise, no mustard, no ketchup. No hot wings.
I cried over the beer and coffee. Maybe more than once. Good-bye to my morning ritual of wrapping my hands around a warm mug containing the nectar of life. Good-bye to coming home after a rough day and yelling/joking, “I NEED A BEER!” to my husband. Hello to milk. And water.
The pain slowly began to subside with my new diet and new pain medicine that made me sleepy. But it was still there.
Before I was diagnosed, I would pee constantly. More than 20 times a day. Sometimes I would go to the bathroom 7-8 times before leaving for class in the morning. I haven’t slept through the night for three years. Most nights I go to the bathroom at least three times, sometimes as many as 12. Not only was this an inconvenience, but the act of going would be a painful burning sensation, and more often that not, I would feel as if I needed to go again immediately afterwards.
But that was the lucky times when I could go. The other times my body, my bladder, my mind ganged up on me, tricked me into feeling as if I had to. As if I REALLY had to. As if I was 6 years old in the backseat of the car yelling, “Daddy, PLEASE, pull over! I need to pee right now or I’m gonna pee in my seat and you’ll have to clean it up if you don’t pull over, PLEASE!” and he would frantically scan the road for any sort of rest stop or hell, even a tree.
But instead I would just sit there rocking back on forth on the toilet sobbing until my husband came to check on me, to try to pull me up and hold me. But the pain would be too much to stay standing and I would collapse back.
That part of my life began to subside, at least.
Eventually the pain would too. I would sit up in bed and notice the act of sitting up no longer caused that old familiar sensation of pain. I could walk a few steps and not feel my bladder revolting against me. I could fall asleep at night.
But it still comes back. There are still nights where I lie in bed, just as I did on that exam table, gripping the sheets and trying to cry as quietly as possible. I can go entire days without taking Tylenol or Aleve. But then there are days when I curse the directions on the bottle forbidding me from taking more than however many pills in a day.
My life is no longer easy. I don’t know how easy it was before, but I feel as if all the things that were once easy are no longer so. Sitting through class. Going on a car ride. Going out to a movie. I went to the bathroom at least 7 times watching Sin City on DVD, so the thought of paying $9.50 to spend 2 hours of my life in a movie theater bathroom is unappealing. There is the nightmare of trying to pick out something I can eat on restaurant menu. And EVERYONE thinks I’m pregnant when I pass on a glass of wine. Sorry to disappoint, Grandma!
The hardest part though? I mean, besides the pain and the diet and all? The hardest part is its my bladder. My bladder, for Pete’s sake. Who spends more than 10 minutes a day thinking of their bladder? My bladder should not be the center of my life. If it was my elbow or my kidney or my medulla oblongata that would be socially acceptable conversation. But saying, “no thanks on the chocolate cake cause of my bladder” just doesn’t work.
And so it leaves me feeling alone.
I have no great moral to end this story with. I have not overcame; I have not learned why God has chosen for me to go through this. I don’t care why, really, ’cause I still think its stupid and unnecessary. I still want to stomp my feet and scream, Why me?
But stomping jars my bladder.
This is my journey of figuring out why. I’m sure every journey goes through this phase. The “why the hell am I doing this?” phase. Do you think Lewis and Clark got too far out of St. Louis before they started thinking to themselves, “are we sure we want to do this? How necessary is it to discover all of America?”
For me, there is no turning back. So though I just want to stomp my feet and sit on the side of the road, I must move forward.