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!

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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.

 

A wooden boardwalk extends over water. The side railings are shades of green and yellow. There are mountains in the distance under a partially cloudy sky.

Saying Yes

I was born with a progressive neuromuscular disease. When I was diagnosed at age three, doctors could not predict how long I would walk, when I would need to use a wheelchair, or even how long I would live.

My parents chose to raise me as a person with capabilities, rather than limitations. Sure, there were activities I could not do. This did not excuse me from chores I could perform, such as washing and drying dishes, or setting and clearing the table.

I was raised to be an optimist – to look for possibilities when others might see challenges, solutions when faced with barriers.

They were shaping what would become my manifesto.

I left my small upstate New York hometown on August 16, 1990, to live for a year as a Rotary Youth Exchange Student in Tasmania, Australia. Thousands of students participate in this international exchange program each year. However, I was one of the first disabled students to successfully complete an exchange year through Rotary International, and the first wheelchair-using student in the program.

Living on the other side of the world for ten months as a teenager taught me important lessons about tolerance, culture and advocacy. But the most important lesson came from advice I received the night before I left home when our neighbor, Doctor Kenneth “Doc” Benson, DVM, came over.

Denise, you are going to be invited to many events this year. You will have lots of opportunities to see new things and meet new people. Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

Say yes. Do it all.

During my exchange year, I said “YES!” to every invitation. I went to dinners, barbecues, parties, sailing trips, basketball games, museum tours and concerts. I traveled from the island state of Tasmania to mainland Australia three times. I toured Tasmania with fifteen other exchange students and then toured mainland Australia with eighty-four exchange students. It was one of the best years of my life.

By the time I returned to the United States, saying yes had become a way of life. I have a wealth of stories to tell because I chose to say yes when others may have said no.

Want to go for a spur of the moment ride to New York City on Saturday rather than sit in the dorms? Sure!

Travel to Rhode Island to watch the local hockey team win a play-off game on the weekend of college graduation? I’m in!

Enter a national competition for women who use wheelchairs? Why not – sounds fun!

Sing at an event in Washington, DC on the eve of a predicted snow storm even though you might get snowed in? It would be an honor!

As my physical capabilities have declined, it has become more challenging to say yes. I still say yes as often as possible, but doing so now requires more effort and planning. In 2014 when I was asked to return to Australia to speak at a 2015 conference, I said yes on instinct without thinking. Thankfully, I had a year to prepare. It took months of research, planning and the assistance of many to make the trip a reality.

Living with disability makes saying yes an exercise in problem solving and strategic thinking. Yet, it is not impossible to say yes even when one relies on others for personal care assistance.

I have required more assistance for over a year due to a sharp decline in my abilities following last year’s femur fracture. I have not been able to drive independently for months, and may not be getting a new van until the end of this year. I have been constantly recruiting and training new Personal Assistants to meet my basic needs. It has been one of the most challenging periods in my life.

It is tempting to just withdraw while I wait for more independence. I have not always wanted to say yes because sometimes it is just easier to say no. It takes less effort to say no. It costs less time and money. It is less stressful.

Whenever I feel like saying no, I am transported back to the summer of 1990. I am sixteen years old again, about to leave for what will end up being the most influential year of my life. I hear Doc’s voice once more in my head and I am reminded that I have no regrets about missed opportunities.

Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

The next time you find yourself faced with opportunity, give yourself permission to say yes. It may not be your first instinct. It may not be easy. It might take planning and preparation, and even then it may not be worth it.

But you won’t know until you try.

The Citrus Peeler

This past weekend I sobbed because of a citrus peeler.

You’re right. It really wasn’t the fault of the peeler. But the sobs snuck up on me when the peeler was in my hand, so it’s a convenient excuse.

Wait, you don’t know what a citrus peeler is?

A citrus peeler is a plastic tool used to help peel citrus fruits. I know, you got that from the name. It has a sharp cutting hook on one end that can be used to slice through the skin of an orange, or in my case yesterday a grapefruit. The other end is a thin, slightly curved, flat piece of plastic which can be used to peel a section of peel away from the fruit. You use the cutting edge to make slices down the sides of the fruit, then peel the sections away with the peeler.

A blue plastic citrus peeler.
My citrus peeler.

Do you need a citrus peeler to peel an orange or grapefruit? Of course not.

However, my father used to swear by his peeler. From the first time he brought one home around the time I was ten years old, he rarely peeled an orange without it. He enjoyed his citrus peeler so much, he bought an extra just in case his trusted peeler broke.

When I was a teenager, Dad would grab his citrus peeler and an orange at night when we sat on the couch to watch Jeopardy! together. We would share the orange while I shouted out answers, trying to beat the contestants. Sometimes, mouth full of fruit, I would frantically wave my hand at the television, moaning when I knew the answer but the contestants got it wrong. Dad would laugh and shake his head.

If you ever make it on the show Neecie, don’t bring any food.

Yesterday, I sat watching a movie, a half peeled grapefruit in my lap, sticky citrus peeler in my hand, and it hit me. I eat fruit this way because of my father. Without warning, the memories of shared snacks came at me.

Grief is sneaky like that. You can be perfectly calm, doing something mundane like peeling a grapefruit, and all of a sudden you find yourself unable to breathe because your insides are being twisted by a crushing vice. I feel as if it waits for you to delude yourself into thinking you’re managing. You’re in your routine, coping as best you can, not mired in overwhelming feelings of loss, and BAM! Like a coiled cobra, grief lashes out and strikes, the venom paralyzing you in a heartbeat.

Which is how I found myself crying over a grapefruit yesterday, holding a sticky citrus peeler. And once the floodgates opened, they didn’t close.

After Dad’s death in December, I knew eventually I would have a melt down. I thought it might happen on his birthday in January. When it didn’t, I thought maybe I’d break down when I next visited his grave. I never expected it to happen on a Sunday afternoon in March while I peeled a grapefruit.

I’m sure it will happen again. I wish I could say that it won’t. But grief doesn’t work in neat, predictable patterns. Next time it may be something other than the citrus peeler. I hope it is, because I’ve cried enough tears over that!

 

Furrry, fuzzy baby penguin chick holding a bouquet of pink roses.

I’m Fine Without a Valentine

If you ask my closest friends, they will tell you I am a romantic. Of course, I will deny it at first, even though deep down I know it’s true.

I love love. I love doing nice things for those I love. I love giving unique gifts I know will be loved and appreciated by the recipient.

But I don’t love Valentine’s Day.

It’s not because I have spent the vast majority of Valentine’s Days without a romantic love. Granted, this will be the 24th Valentine’s Day since I was 18 years old and I have only had a romantic love for 4 of those days.

Yes, I love having a romantic partner when that is a part of my life. It is thrilling to have someone who honors your vulnerability and likes you anyway; someone who shares intimate secrets and sends your dopamine levels soaring with compliments and kisses.

However, my self-worth has never been tied to having a romantic relationship with a man. I have always been comfortable on my own, not really able to understand those people who felt like they needed someone to “complete them,” or make them “whole.”

Some of my friends tell me it’s just because I haven’t met my “soul mate,” the person I am “supposed to be with.” They tell me to just hang on and when the time is right, “Mr. Right will come along.” What if I’m alright without a Mr. Right?

My dislike of Valentine’s Day is not because I have not been exposed to extended romantic relationships. My parents celebrated their 63rd anniversary last July, six months prior to my father’s death in December. My grandparents, aunts and uncles, sisters and brothers-in-law, many friends – all examples of strong marriages and relationships I am blessed to witness.

I certainly don’t dislike Valentine’s Day because love is absent from my life. I am fortunate to have a wide circle of support, love and affection from a variety of friends and family. These connections are central to my feeling of well-being and happiness. They sustain me when times are challenging and help me celebrate the good.

Maybe my dislike of this day meant for lovers stems from the fact that even if I found romantic love and wanted to get married, marriage is not a realistic option for me due to my disability and my need for long term care. Like most people who receive home care for an extended length of time, I rely on Medicaid to pay for my Personal Assistants. Thanks to the New York Medicaid Buy-In Program for Working People with Disabilities (MBIWPD), I am allowed to work and earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. It also varies from state to state. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. However, as a single person receiving services through the MBIWPD in my state, I can earn up to approximately $60,000 annually (the exact amount changes each year) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy. Insurance does not pay for long term care though. Medicaid pays for the personal care I need to remain an active member in my community.

But if I marry? A married couple can only have a joint income of approximately $81,000 annually to qualify for services.

I am authorized to receive 70 hours of home care each week. If I were to pay out of pocket for this care, it would cost me approximately $20/hour. That is $1,400 each week, or $72,800 a year. Just for personal care. That is more than my current annual salary, since I cannot earn more than $60,000 and still qualify for home care.

I have always said I will never put myself in a situation where my safety and security are dependent on another person. Part of it is my own independent stubborn streak, and part of it comes from conditioning from my parents who told me repeatedly as I was growing up how important it is that I be able to take care of myself. If I were to marry, I would need to find another job with a higher salary to cover the cost of my care, never mind my living expenses.

Sure, I could find a job that pays more than $100,00/year. Those jobs exist. I have the degrees and skills to be successful at those jobs. But as much as I complain about playing the Medicaid game (proving my disability every six months, tolerating the home visits from nurses and social workers to assess my needs), I play it because I need to. I am dependent on these services to live independently in my community where I am loved and valued, and can give love to those who are important to me.

That’s the love that matters most to me.

However, if anyone has any leads on “Mr. Right,” I’m not opposed to having some fun… 😉