Silhouette figures of a male and female with their legs crossed and their hands in front of their crotch as if they have to urinate.

My Drinking Problem

Because of the weakness caused by my neuromuscular disease, I have relied on other people to help me go to the bathroom for the past eleven years. Since 2007, I have timed my use of the toilet around when and where I will have proximity to an accessible toilet AND a Personal Assistant (PA), sister, cousin, friend, neighbor, or other kind person I could coerce ask to help me. I have restricted my fluid intake to coordinate, as best as I can estimate, with other people’s schedules and the times I will be near toilets I can safely use.

I wrote about my battle with “pee math” in this post. Since I have been so open about my methods over the years, I was surprised by the number of friends who did not know this was a routine for me. But, things are changing!

As you might remember, six weeks ago I had my suprapubic catheter tube (SP Tube) placed. According to the surgeon, the procedure “was textbook,” and went well. There were no complications from anesthesia. I remember being wheeled into the operating room with bright tropical fish painted on the walls. The breathing mask went over my face and the next thing I knew, I was waking up in the recovery room.

My SP Tube means I no longer need to sit on a toilet to urinate. Instead, urine freely flows out of the SP Tube to a collection bag. During the day, I wear a bag strapped to my leg. At night, I connect to a larger bag that hangs on the side of my bed.

I am now free to drink without the worry of how I will get on a toilet, or who will help me, or when it will happen. If I want to have an additional cup of coffee, I don’t have to think about where I will be in the afternoon and if I will have a PA with me to help me transfer on to the toilet. Now, I just drink the coffee! Or the juice. Or the water. Or the wine. Or whatever I want!

When I am at work, I can have as much water as I want! The first day I returned to work after surgery, I drank five, yes, FIVE, 16 ounce glasses of water. Granted, I had to dump my leg bag five times as a result. But I was not dehydrating myself because of lack of access to help and an accessible bathroom.

Drinking as much as I want, whenever I want, has created new challenges I have not had to face for several years. For the first time in a decade, I have to worry about accessible public restrooms.

I know – it sounds strange to hear a disabled woman admit she hasn’t worried about accessible public restrooms on a regular basis. I haven’t used them for a decade. Sure, I’ve always known it was an important issue. But, it wasn’t an issue for me so I spent my advocacy energy on other matters. At least, I did until the end of April.

Not all so-called “accessible” restrooms are actually usable. Disabled people know this but most non-disabled people do not. Most non-disabled people see grab bars next to a toilet and think the bathroom is accessible. Grab bars are not the only feature that make an “accessible” restroom usable. In addition to grab bars, accessible restrooms must minimally have:

  • Accessible sinks that can be operated with a closed fist (no faucet knobs that require grasping and turning)
  • Soap and paper towel dispensers and mirrors mounted at lower heights
  • Lever doorhandles or handles that can be operated with a closed fist
  • Doors that do not require more than 5 pounds of pull force pressure to open

The majority of bathroom doors open into the bathroom rather than out. This is probably so people walking in a hallway don’t get whacked by someone opening the bathroom door. While I understand that rationale, there are usually more people outside a bathroom than inside. If I can’t open a door because it requires more force than I can generate, I stand a greater chance of finding someone outside a bathroom to help me than I do inside the bathroom.

Since I had my SP Tube placed, I have been stuck inside six public restrooms because the door was too heavy for me to pull open. I now take my phone into the bathroom with me each and every time I go. If I am with a group of people, I ask them to come rescue me if I don’t return after five minutes in the bathroom. Last week I learned if there are multiple bathrooms, it is helpful to tell your colleagues which bathroom you are actually going to if you make this request. My friend Melissa dutifully came looking for me after I requested a rescue not knowing I was in the bathroom on the other side of the building. She sent me a text saying, You good? I just checked the bathroom and you are not there…

I am still learning how my body behaves with all of this extra fluid intake. There are still timing issues related to drinking, particularly when planning paratransit bus trips. It’s not fun to ride around on a bus for an hour with a leg bag that is full to the bursting point. Thankfully, I have not had any messes or spills.

Next week, I will return to the pool – the last step in resuming all of my activities. It will feel wonderful to return to the water, and I miss my swimming buddies.

Right now, I need to go grab a drink. I’m empty!

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View of a grey Derwent River, with cloudy skies. Bruny Island is in the distance.

To Tell the Truth

I’ve been sitting on this post for a few months, writing when I felt the urge. It seems fitting to share this today, which I just learned is the International Day of Happiness, because I am the least happy I have ever felt in my life and I don’t know what to do about it. Admitting that is difficult, because I know my friends and family will want to help me, make things better, do something to make me happy. The reasons for my unhappiness are complex and there are no easy fixes. Trust me, if there were, I would have done them by now.

This has been building since I lost more physical independence after my femur fracture in 2016. That catastrophic event took away my ability to independently drive my van, and increased the number of personal care hours I require. It also caused me to change how I use the bathroom, limiting my ability to pee freely as I described in this post. OK – to be fair, I’ve never been able to pee freely. But, until I broke my leg I was not limited to the use of three bathrooms on the planet.

The loss of independent transportation required me to move – twice – in the past eighteen months. I have been using my local paratransit system for most of my travel to and from work and events. Paratransit is a shared ride system, which means you are not guaranteed a direct ride from your pick up location to your destination. There have been days that I am picked up at my house (which is 15.9 miles from my office) to ride around for two hours, picking up and dropping off other passengers until I am dropped off at work. On average, I spend two and a half hours every day on the bus to travel my 32 mile round-trip commute. This is time I don’t get to write, volunteer, read, work, or just relax.

Last September, my friend and former college roommate Chris surprised me with a phone call. We hadn’t spoken since the start of summer, but our friendship is one where we can pick up exactly where we left off even if it has been months since the last conversation. We we played catch up and traded stories, I admitted that the past several months had been stressful. My exact words were something like, “I’m not really doing well and feel like I’m barely keeping it together most days.”

Chris was quiet for a moment, then responded, “Well, I wouldn’t have known that from your Facebook posts! You’re so busy, and always writing about volunteering with Rotary.”

The truth? I hate being negative all the time. So I don’t share all the crap I’m dealing with on social media.

I am not alone in this. According to a survey conducted in Great Britain, only 1 in 5 people are truthful in how they portray themselves on social media sites like Facebook and Twitter. According to the marketing company Custard, who performed the survey:

When asked how people’s lives differ online, 31% of respondent said that their social page is “pretty accurate, just with all the boring bits removed” and 14% said that their profile makes it look like they have a “much more active social life.” The survey also showed that men are more likely to lie about their lives through social networking sites, with nearly half (43%) of men polled admitting to fabricating facts.

I don’t feel like I’m lying on social media. I am not making up the things I share publicly. In my case, I choose to try to keep complaints to a minimum on Facebook. I am consciously not sharing most of the daily stress that is causing me to slip further into a pit of unhappiness. At least, I try my best to keep the negativity to a minimum.

But I’m struggling. Right now, finding positivity is a chore I force myself to complete each day.

It used to be my natural way of operating. I am an optimist. I see the glass half full. I believe things could always be worse. Yet, recently I don’t feel up to the challenge of maintaining optimism.

I have withdrawn from friends and family who care. I text instead of calling because it requires less energy. Until last week, I hadn’t sent a birthday card to anyone in at least two years. At a time when I should be surrounding myself with other positive people because I’m an extrovert who gets energized in social situations, I am hibernating.

I am not writing as often and when I do it’s not my best work. Writing helps me process what is happening in my world. It is a way for me to maintain balance and emotional stamina. A glance at my blog statistics shows I only posted 55 times in 2017. That may seem like a good number. But when you compare it to 2015, the year before the femur fracture, it pales to the 164 posts I shared.

Before any of you start sending me notes reminding me that you love me and that life is not all bad, I need to tell you something. I KNOW this is temporary. I KNOW what is happening in my life is not the worst thing in the world that could happen. I KNOW there will (eventually) come a day when my new wheelchair doesn’t make me cry in pain. I KNOW I will (someday) get that new wheelchair accessible van with the high tech driving controls which will enable me to participate in my community at will. I KNOW there are millions of disabled people who would love to have the difficulties I am facing right now – people who don’t have accessible housing, access to paratransit, full-time employment, adequate personal care assistance. I KNOW I am speaking from a world of privilege they do not have and would gladly take in a heartbeat.

Knowing those things does not make the challenges I’m facing less real or less of a barrier in my life.

Last week I attended a book reading at my local independent living center. During the community discussion after the reading, someone mentioned the anger disabled people feel – anger that is not acknowledged or validated. Often, well-meaning people will listen to me vent in frustrated anger and respond by saying, “Well, at least it’s not this (insert awful thing here)” or “It could be worse! You could have (insert other disability or illness here).”

Those comments don’t help me feel less angry. They don’t acknowledge that here and now, I am living with levels of fear, anger, and unhappiness which threaten to burst out at inappropriate times. They don’t validate my feelings of discouragement at having to battle and navigate a bureaucratic system which is supposed to be helping me but has not produced anything meaningfully helpful in 18 months (I’m talking about you ACCES-VR).

So, today, on this International Day of Happiness, even a gratitude list doesn’t make me feel happy. I debated whether or not to share this post and eventually decided perhaps there was someone else who is not happy today who could benefit from knowing she is not alone. I edited, deleting swear words and prepared myself for the reaction it will bring.

Tomorrow I’ll be better. That’s the way it’s been for over 2 years. This too shall pass. Periods of happiness can be found, just not for me today.

Everyone Loves a Snow Day

I went to bed last night thinking the predicted storm might not be so bad for us. The meteorologists were calling for heavy wet snow for the nearby Catskill, Adirondack and Berkshire mountains – over a foot. But as of 10 PM, we were only supposed to get 2-5 inches.

Here’s what it looked like at 8 AM. When my Personal Assistant left, the snow was over her shoes. Side note – she’s a gem for driving here at 5:15 AM to get me out of bed and showered on days like this. She never calls out due to snow.

My office was closed today because the building lost power due to the storm. Even though it’s been 23 years since my last days as a full-time student, I am young enough to appreciate a snow day. Especially one I did not expect!

So far, I have been fabulously lazy. For the past 4 hours all I’ve done is crochet while binge-watching episodes of Bondi Rescue on Netflix. Yes, I know, it’s crap reality TV. But it’s sunshine, blue water and Australian (mostly shirtless) life guards. When this is the current view outside, I’ll take mindless sun and surf any way I can get it!

Winter scene of heavy snow on an apartment building with cars parked in a lot.
That’s my van Clyde buried under the snow.

How about you? What’s your favorite snow day activity?

Silhouette figures of a male and female with their legs crossed and their hands in front of their crotch as if they have to urinate.

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!

My Go-To Tunes: Old School Country

I have always been a person who associates memories with music. I can’t always remember what I was wearing for a specific event, but I can tell you what memories are attached to songs.

Growing up, our house was always full of music. The stereo was playing, or one of my sisters was practicing her musical instruments. I learned to sing songs which may or may not have been appropriate at a young age.

One of the first songs I remember singing is “Rhinestone Cowboy” by Glen Campbell. I used to have an orange plastic rocking horse with a blue mane. I named him Filbert. I would ride Filbert in my parents’ living room, wearing my cowboy hat, and sing “Rhinestone Cowboy” at the top of my lungs. I still know all the words. I don’t know whether to be proud of that.

Today I heard the news that Glen Campbell passed away. In honor of his life and legacy, I give you my Old School Country memory. Thank you for the music Glen.