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!


14 thoughts on “The Freedom to Go

  1. Wow, Denise. Most thought-provoking!

    My life would change dramatically. Ever since our kids were young, the standing family joke is Dad stopping for another bathroom break. My favorite ride at any amusement park? Ask my kids.

    The Tinkle Ride.

    I love the way you insert tongue-in-cheek humor into such a serious matter. Your matter of fact style always makes for a compelling read.

    Good luck with your next steps. I’m praying for you!

    Liked by 1 person

  2. Denise, as always you bring incredible awareness to plights that others may not even think of in absence of your diligence. I can almost picture you describe, and agree it would have been a great capture for when you no longer need to deal with the traveling commode. My thoughts and prayers are with you as you make this incredible life decision and will be watching eagerly for updates along your journey. Via

    Liked by 1 person

    • I really do wish I had taken a photo when it happened. We both sort of looked at each other when we realized what was happening, like “Um – it looks like you’re peeing in the parking lot while I’m in the van!” It really was funny. Thanks for your support.


  3. Coincidentally, I just returned from a bus trip (16 hours both ways) in Mexico where I limited my fluid intake because I didn’t want to use the bathroom on the bus. Having experienced that small inconvenience, I am better able to understand why someone would want to get rid of the “pee math.” There were a whole host of other issues related to bathrooms on this trip. Whatever simplifies one’s life and reduces worry has got to be a plus. All my best as you make this decision.

    Liked by 1 person

    • Thank you. I have to admit I laugh when I hear stories about a plane making an emergency landing because of bathrooms not working. I’ve taken 15 hour flights and never used the toilet. These people can’t hold it for 3 hours? 😉


  4. Wow. I would never have imagined what this was like had you not taken me through the process. What you describe sounds like a nightmare, one which would create so much pressure not to stay hydrated. I hope one of the two alternatives you mention gives you more autonomy. I have so much respect for your patience coping with this and for telling us how it is.


    • Thank you for your support. It’s actually not that difficult for me, because it’s just what I do. And I’ve been doing it for so long now that I forget it’s remarkable to others who aren’t familiar with it. I’ll keep sharing!

      Liked by 1 person

  5. This is a wonderful article. I’ve seen a couple like it recently, and I identified because I too have to do pee math on a regular basis. I’ve never actually tried to measure ounces and such, but I’ve definitely regulated what I drink and taken pills to get rid of the feeling of having to pee in certain situations. And yet, I feel tremendous anger at the idea of anyone having surgery because they don’t have enough care to go to the bathroom as often as they need to. I absolutely would refuse to do that, even if it meant sitting outside the Medicaid office with a toilet until I got the hours I needed. That’s not to say I might not have to make this choice someday if I can’t keep UTIs at bay, but I am doing everything I can to preserve my pee-ability. 😛 I take a supplement which has stopped my monthly UTIs, I’m at 9 months UTI-free now! I feel like the risks of having a tube coming out of you all the time would also be significant. It’s not something I want to do to myself unless I absolutely have to. It’s also why I won’t use hoists/lifts. I must maintain the ability to use a standard accessible restroom. If someone can’t transfer me by lift/pivot, they can’t work for me… and I’m far from skinny. Again, this might have to change someday but I will continue to fight because that’s my independence on the line. I absolutely support you but please make sure you are making this choice out of free will and not because of lack of PCA care.


    • Thank you. To be clear – I’m not making this decision because of a lack of personal care. I am fortunate enough to receive adequate hours. I’m making this decision because right now there are only 3 places on the planet where I can access a toilet. Yes, there are risks with both options. But I cannot use public restrooms with my transfers any longer. If I want to live and engage with the world, I have to do something.


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