The Freedom to Go

Quick quiz – how much fluid have you consumed today? How many times have you urinated? Were you able to do it on your own or did you require assistance?

Most nondisabled people don’t spend too much time thinking about going to the bathroom. At least, it seems that way to me based on observations of friends and family. I don’t have that luxury.

If you are a friend of mine or read my blog regularly, you are probably familiar with the term “pee math.” Pee math refers to the daily calculation of fluid intake, multiplied over time, divided by the availability of a Personal Assistant (PA) to help me urinate. Those of us who require assistance from someone else to go to the bathroom become experts on pee math.

Expertise in pee math requires more than a knowledge of fluid ounces, minutes and hours. Like any equation, there are variables to consider. I must calculate and plan when and for how long I will have access to a PA to help me. I have to factor the other tasks I must have my PA complete in my allotted hours of care, and where I will be throughout the day.

Since I broke my leg in January 2016, I have not been able to bear weight on it. I require the use of a special transfer board and bariatric bedside commode to manage bowel and bladder function. I wrote about it in this post when I described coming home from the rehabilitation hospital. There are three places I can urinate – my house, my office, and my sister Caroline’s house.

Three places. Think about that. How would your life be different if you could only go to the bathroom in three places?

Now, add in the complication of requiring assistance from another person to make this happen. What changes do you need to make in your routine? How much fluid can you consume? What happens if something doesn’t agree with you and you need to go NOW but you aren’t at home, work or my sister’s house?

I have been engaged in a graduate level course in pee math for the past two years. Everything is planned – what I drink or don’t drink; when I drink; what I wear (skirts are easier for some PAs than pants); how I schedule life.

I don’t travel as much as before the fracture and when I do, I have to take a bulky commode with me. Yes, when my best friend and I drove six hours to Erie, Pennsylvania, this summer for Ms. Wheelchair America, I rode in the back of my van with a commode across my feet and legs. Every time we stopped, we had to unload it so I could get out of the van. This resulted in some very curious looks when we stopped at the casino for lunch and Steph sat on the closed toilet seat in the access aisle next to the van while I fished in my pocketbook for lipstick. I wish I had a photo of that experience to add to this post.

A few months ago I made a decision to pursue an alternate means of urination. I began to research two options – the suprapubic catheter (SPC) and the Mitrofanoff appendicovesicostomy, commonly referred to as “Mitro.” After discussions with multiple doctors and friends who use SPCs and Mitros I think I’ve made a decision. There are still some medical tests to complete, but with any luck I will be doing something later this spring to make it easier for me to “go.”

Two of my friends have shared their journeys down this path on their blogs and social media. I’ve decided to do the same because I wish I knew more about my options at a younger age. For decades, my life has been at the mercy of pee math. This is only happening now because I brought up the topic and suggested the alternatives to my doctors. Nobody on my medical team encouraged me to think about it even though I have been complaining for years about how infrequently I urinate and how my inability to access a toilet is limiting my life. Maybe if I had a history of urinary tract infections or bladder complications, that would be different.

For now, I’m dreaming about the day I can have as many afternoon cups of tea as I want. What will it be like when I am no longer limited by how much fluid my bladder can contain? How will life change when I am free to go? We’ll see!