Math symbols and equations written in chalk on a chalkboard.

Living Without Pee Math

Some of you may remember I had surgery last year in April. The surgery was for placement of a suprapubic catheter tube (SPTube) for urination. The decision to have the surgery put an end to me having to practice “pee math.” Those of you unfamiliar with that term may want to check out this post.

I shared my initial thoughts after surgery in this post. I wrote it just six weeks post-surgery and I was still figuring out what it meant to live with the ability to consume unlimited amounts of fluid at any time. Now that I’ve had eighteen months to experience the freedom of being able to “go” anywhere, I have a few more observations.

Never underestimate the importance of peer support!

I was fortunate to have access to peers at every step of the way who were using SPTubes. When I was doing research and preparing for surgery, my friend Emily shared information about the supplies she uses every day. My friend Autumn, who got her SPTube just a few months before me, talked me through questions about recovery and hygiene. And thanks to social media, I found a group of SPTube users on Facebook. They were all generous with knowledge, tips and tricks. I would have been much more anxious without their help and reassurance.

“Accessible restrooms” are not always user-friendly.

I know, I should have known this. I’ve been using a wheelchair since 1994. But, I didn’t use public restrooms on a regular basis for more than a decade. So I forgot how bathrooms can comply with accessibility building codes but not be easy to use. Stall doors that don’t swing shut easily or don’t have an interior pull handle allowing a person to pull them shut; sinks which are set back too far for my short arms to reach the controls; doors which are too heavy for me to pull open – I could go on. These barriers are just some of the reasons I starting reminding myself to….

Take your phone with you!

It only took one instance of being stuck inside a public restroom without any way to call for help for me to grab my phone each and every time I head to the toilet. Usually all it takes is a text to a friend and help is on the way. However, I have had to call establishments and say, “Hi, my name is Denise and I’m stuck in your ladies room.” These calls are never as fun in the moment as I make them out to be in the retelling. There is a simple fix to this. According to the Americans with Disabilities Act, the law where I live in the United States, interior doors should not require more than 5 pounds of pull force pressure to open. I do my best to tell establishments about this law. Now you can do it too.

Why did I wait so long?

I spent two decades becoming an expert on pee math, dehydrating myself and restricting fluid on a regular basis. Now that I have spent eighteen months with my SPTube, I realize how foolish I was for not getting it sooner. One reason I did not get my SPTube sooner is none of my medical doctors encouraged me to consider alternatives. My doctors knew of my routine and never told me about options like the SPTube. Since my surgery, I have asked my doctors why they never recommended I pursue a SPTube. Sadly, most replied they didn’t recommend it because I was not experiencing any medical issues like excessive urinary tract infections or kidney trouble.

What I did experience before my SPTube was reduced quality of life. I enjoyed time with friends, but I was never free from worry about when I would get to go home and use the toilet. I had fun with family, but I always counted time until I could begin consuming liquid at parties. I was never able to drink as much as I wanted, when I wanted.

Now, I can drink as many cups of tea as I want to in the afternoon. I can have an extra cup of coffee in the morning. I can drink the water at a restaurant and still eat the soup for lunch without worrying about if that choice means I have to skip liquid for the rest of the day until I get home. My skin, nails and hair look healthier. My lips aren’t as cracked.

My days of pee math are gone. These days, when I do math I am calculating the quality of life benefits that come with additional choices and independence.

What Happened to Dee?

Colored leaves float on a river under red and orange trees on the riverbank.

It is fall again in northeast New York. It has been almost a year since I’ve posted anything on this blog. During those eleven months, I have been coming to terms with my diagnosis of depression and what it means in my life; learning how to drive my new van with high tech hand controls (FINALLY!); working and advocating to save the home care program that keeps me independent in my home; having and recuperating from major surgery; and trying to figure out what happens next.

Did you notice there was hardly any mention of writing in there? I have not written as much as I hoped to this year. In fact, other than the pieces I have written for my monthly memoir writer’s group and the essay I’m working on for this year’s Brava!I have not written anything outside of work other than social media posts and grocery lists.

Rather than be upset about my lack of writing, I have chosen to cut myself some slack. This is not my normal reaction to failing to meet a goal, and some might say it is a positive step for me.

Now, things are starting to come together. I am healed from surgery and have been cleared to return to work next week. I feel the best physically and mentally that I have felt in four years. I am driving again and embracing the privilege of independent mobility and the extra time it gives me.

I do plan to return to writing and blogging. In fact, I am excited to give DeeScribes an overdue update. When I started sharing my words here in 2014, I lacked a direction and was just trying to get practice at pressing “publish.” I have given considerable thought to what I want from my writing, and where I hope to take things.

Thank you for your patience as I took the time to work on my mental and physical health. I hope you will stick around to see what is next.

BraVa! 2018 – Playtex 8267

I was honored once again to have a piece selected for the 4th Annual BraVa! This event benefits the YWCA of the Greater Capital Region. It is a fundraiser that seeks to provide new bras to women and girls that live at YWCA-GCR and those in need in the Greater Capital Region of New York. As described on the YWCA website, the event features writers from around the region and beyond who read jury-selected poems and essays or perform songs and monologues on the subject of brassieres in their lives.

Once again, it was an inspiring and uplifting (pun intended) evening. The audience laughed and some of us cried. The poems and memoirs were poignant and truthful. I left the event grateful for the opportunity to witness these stories, ready to write more of my own.

I haven’t written much at all these days. I wasn’t even sure I would write something for BraVa! this year. I spent three days in the hospital in mid-October and was released just 10 hours before the submission deadline for the event. At 7:10 pm, four hours and fifty minutes before the deadline, I decided to write this piece. I read it to my mother on the phone before I hit “submit.” On Friday, I read it for the audience at BraVa!

If you are shopping this holiday season, consider buying a new bra for your local women’s shelter. Everyone needs support now and then.

A woman wearing a red cape is seated in a wheelchair in front of a podium. She is reading into a microphone. There is an indoor circular clothesline with various color bras hanging on it on the other side of the podium.
Photo courtesy of Daquetta Jones

Playtex 8267

Whenever I am shopping in the lingerie section of a store selling Playtex bras – the ones sold in the plastic containers with the blue or pink cardboard – I always look for model number 8267, the 18 Hour Original Comfort Strap Wirefree Bra. 34 C is apparently a popular size because rarely do the stores have it in stock. If I am lucky enough to stumble upon the coveted size and model, I whip out my phone and call my mother.

“Mom – you still wearing a 34C? It’s the 18 Hour one, right? I’m in Boscov’s shopping for bras and I looked at the Playtex ones for you. They only have it in white, is that alright?”

The call is really just to let her know to expect a new bra in the mail. Of course my mother, Caroline or Dolly as she is known to everyone, is still wearing the iconic Playtex 18 Hour Bra! It’s the only style of bra I have ever seen her wear in my 45 years of life. At 91 years old, Dolly is not about to change something as critical as her trademark bra.

Dolly’s bra, like her, is no nonsense and genuine. It is functional without needless frills. It gets the job done in a superior manner without calling attention to its work and craftsmanship. No excess lace or color is necessary for her brassieres. Although the model now comes in a variety of colors, you won’t see Dolly wearing any colors other than white or natural beige.

As a child, I noticed the other neighbors only put sheets and towels on their backyard clotheslines. However, Dolly’s underwear and lingerie were displayed for all to see as they dried in the breeze. Of course, so were mine when I lived at home since I was physically unable to do my own laundry. This didn’t seem odd to me because Dolly never used her clothes dryer then and only rarely uses it now. Two days before I left home to be an exchange student to Australia at age 16, I posed for a photo in the backyard with my parents. Dolly sent the photo halfway around the world to me and I promptly put it on the dresser in my borrowed room, in a borrowed frame my host brother gave me. Not until he asked me why we had posed before laundry did I realize Dolly’s five bras were waving in the wind behind our smiling heads. The photo spent the entire year with me, on display in each host family house – me, my parents and Dolly’s bras. Today it is on the first page of my 4 photo albums from that magical year Down Under.

A few weeks ago, I told my mother I might write this essay about her and her bras. I wanted to know if she would be comfortable with me sharing what some would consider personal information with strangers.

“Well, I suppose if anyone can find a way to make my dull white bras interesting, you could. Remember, I wear the 18 Hour – not the Cross Your Heart.”

Was she telling me I was shirking in my bra shopping? Had I made a mistake and accidentally purchased the wrong style? I went online to verify I had purchased the right bra and made a shocking discovery. In 2015, Playtex had a rebranding and changed the model number and name of their iconic bra. It is now model number 4693B, known as the 18 Hour Ultimate Shoulder Comfort Wirefree Bra. I called her again, wanting to make sure she had this important update and also to verify she had sufficient quantity. Apparently I had been neglectful in my duties.

“I’ll still wear it! I have 4 right now so I’m good. I rotate them in my drawer after I do the laundry so I don’t keep wearing the same one all the time. That way they last longer.”

Even though it has been years since I’ve sent a new bra to my mother, she is still treasuring the past gifts I’ve given her; taking care to keep them in good condition for a little longer until life permits me the time and energy to resume my regular lingerie shopping.

Simple life lessons from Dolly. Who knew so much could come from a bra?

To This Year’s Class of MWA

Two white women wearing white t-shirts with red lettering that reads "Ms. Wheelchair America." The woman on left has short brown hair and is leaning down next to the woman on the right who is wearing glasses and is seated in a wheelchair. They are on a walkway over a river.Facebook showed me this photo this morning and reminded me that seven years ago, my best friend and I were having fun in Grand Rapids, Michigan, during the week of the 2011 Ms. Wheelchair America (MWA) pageant. It was a timely reminder, since the contestants are gathered in Grand Rapids again right now. They are getting ready for the second day of judging as I type this.

MWA has been a part of my life since I was Ms. Wheelchair NY 2001. As a state titleholder seventeen years ago, I could not predict all the ways MWA would impact my life. I made some of my best friends at my first national pageant as a participant in MWA. Maintaining a state program; mentoring state titleholders; serving on the MWA Board of Directors; traveling to other state pageants – all adventures gained by my volunteer involvement and things that likely would not have happened if I had been crowned Ms. Wheelchair America (I was first runner-up).

Most important to me is the peer support group I have cultivated through my involvement with MWA. In my opinion, this is the best aspect of the MWA organization. At any moment, I know I can reach out to women who have experiences similar to mine. They are creative, resourceful, smart, and generous. If I have a problem or quandary, they will have insight and will offer it freely. If I need support or understanding, they are empathetic and encouraging. This sisterhood is a valuable source of energy for me when I am feeling bogged down by the continual need to advocate for access in a world which is often not designed for our needs.

This year’s titleholders are waking up to a new day. It is mid-week so they still have energy. I hope they realize they are participating in a week which will change them. To all of them, I say best of luck and enjoy this opportunity. This week is not about who goes home with the crown on Sunday. It’s about who you connect with on the way and how you put that into practice in your everyday life when you go back home to your individual states.

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!