About Emily

Wednesday, August 3, 2016

Time to Take a Chill Pill

A picture of a pill that says in all capital letters, "CHILL".

Peetee will be one-month old in less than a week! It’s hard to believe that I’ve been peeing free for almost thirty days and that I’ll have years of this liberation to come. I’ve been drinking 60-80 ounces of water per day, which is the most hydrated I’ve ever been in my 39 years of life. Pee math isn’t exactly a distant memory, but it’s hard to imagine only drinking around 20 ounces per day again. While I don’t exactly look like a new woman, I feel like one in many ways. My skin is softer, brighter, and clearer; I’m not as bloated; and my energy levels are higher. There’s also something satisfying about knowing that you’re flushing your system with pure water every few hours. These are the positives that immediately come to mind about this experience, not to say that it’s been a totally 100% positive experience. Peetee and I have had a few bad days.

Again, here come the newborn metaphors. Like with any new “child,” some days your kid is on-point and other days you’re looking for the nearest fire station to drop him off at. Every morning when I wake up with Peetee, I assess how he looks, which means that before I clothe him in his 4x4 drain gauze pad, I clean and observe the stoma or hole that Peetee the SPC tube comes out of. My stoma is about the size of another belly button, and because it has a tube through it that taps my bladder like a keg, it will always be open. It's kind of like a larger version of a bellybutton piercing, but way less 1993.

Some days Peetee wakes up on the right side of the stoma, and some days he wakes up a hot mess. There’s really no way to predict his moods or why he’s good some days and not so good other days. My lack of experience as a “SPC mom” doesn’t help either. When Peetee acts up, I panic and tend to overreact. I’ll call all of my SPC mother friends and try to get their advice. While I love that I have a large group of friends who have been through this experience, every mom has different advice for me and that can get confusing.

A picture of a Neosporin tube.
A picture of a Hydrogen Peroxide bottle.

For instance, one day Peetee looked a bit red and angry. I took a picture of him and texted it over to one of my mom friends. She said to put hydrogen peroxide on him occasionally when he acts up. Then, I showed that same picture to another friend and she said, “Nooooooooo - do not EVER put hydrogen peroxide on Peetee!” I guess hydrogen peroxide, according to this second mom is no longer the recommended course of action for wound care. This exact same debate occurred with using a topical antibiotic ointment like Neosporin. One mom tells me that Peetee will like Neosporin, another mom says that she’ll call SPC Protective Services on me if I use it.

I know, you’re probably thinking, “What does her doctor say?” Well, this is where it gets even more challenging. Dr. Bruce, I’ve gotta tell ya, is a pretty busy guy. During the first couple of weeks of Peetee’s life, I was calling his office and speaking to the triage nurse on call every few days. While the nurse seemed like a nice lady, she also made me feel like I was completely neurotic. Her answers, I’ve learned, directly mirror Dr. Bruce’s; they are both of the opinion that Peetee is much more resilient than I give him credit for. My doctor and his nurse are basically like grandparents that spoil your kid rotten. Peetee can do no wrong. Peetee can stay up all night and eat cookies for every single meal of the day. Peetee falls down and skins his knees, Grandpa Bruce spits onto his hand and rubs the wound clean. According to my doctor, I could douse Peetee in gasoline and he’ll be just fine. A little gasoline is good for the kid, it helps him toughen up!

So like any overprotective mother who thinks her parents obviously forgot what newborn care taking is about, I have spent far too many hours on Web MD and in the pharmacy buying supplies to try to make Peetee happy during his grumpy moments. I rushed him to the RediClinic one morning when Dr. Bruce was on vacation because I thought he was infected. The RediClinic is basically like the daycare room at IKEA. While they can easily handle most people’s common issues, children like Peetee are not their forte. They took some urine out of the bag that Peetee's draining into, said I had a ton of bacteria, and prescribed me a ten-day course of antibiotics. As it turns out, I learned from Dr. Bruce that testing urine that doesn't come straight from the source is probably the only solid no-no he's offered. If I do test urine that comes out of a bag that is washed out over and over again, it's undoubtedly going produce a tainted sample and read as positive for a urinary tract infection (UTI).

A picture of the supplies I bought to take care of Peetee. As you can see, they take up the entire bed.
A picture of the supplies I actually use (10% of what I bought).

By far, the hardest part about being a new SPC mom is dealing with the unknowns and forcing yourself to stop being a helicopter parent. I finally got this message this Monday, when after a rough morning with Peetee, who was especially grumpy, I called into Dr. Bruce's office and asked for my monthly follow-up appointment to be moved up a week. I drove to the office worried I'd hear the worst news - that I'd have to contend with constant UTIs that would require antibiotics, or a badly infected Peetee, which would turn gangrenous and cause me to have to have my entire lower half amputated.

I should note that the follow-up appointment included my first Peetee change. On a monthly basis for the rest of my life, I will need to get a fresh tube put in. This is a quick process that involves:

1. Deflating a balloon that is filled with saline solution that blocks the hole and keeps Peetee in place.
2. Pulling out the tube.
3. Putting a new tube in and filling the new balloon that's attached to the tube with saline.

An experienced nurse, like Dr. Bruce's nurse, can do the change in a total of 120 seconds. Many people learn how to do it and just teach their personal care attendants (PCAs) or family members to do the change. Since I'm a new mom, I've decided to leave it to the professionals until I become more experienced.

Going in for this initial follow-up, I was convinced that Dr. Bruce was going to come in, look at Peetee, and tell me that I needed to prepare to lose my torso. Thankfully, quite the opposite occurred. Here are my take-aways:

1. He said that Peetee looked well cared for and clean.
2. He said that Peetee was an irritated baby, but not infected and/or probably not ever infected.
3. He's ordering a home health nurse to come out to my house and do the changes.
4. He wants to see me in four months and by then, Peetee should be well established and much happier.
5. He, in more or less words, told me that I needed to take a chill pill.

Oh and by the way, the change went really well. Peetee likes his new body, but he stung and burned a little in the two minutes that he was getting outfitted by the nurse. I took a couple of Aleve before the appointment and I'm not even sure I needed that.

Since leaving the doctor's office on Monday and taking my chill pill, Peetee and I have had two really great days. I've decided to take a more hands-off approach and only have my PCAs tell me if Peetee looks raging angry rather than just a bit ornery and I've cut down on my doting significantly. When Peetee cries, rather than immediately jump into crisis mode, I let him bitch for a bit and see if he calms down. He has calmed down every time.

In the meantime, I pee. I empty my bag about six times a day, and again, I cannot express how awesome it is to go to the bathroom all by myself. I also cannot express how nice it is to not have to constantly monitor my fluid intake and hold my need to use the restroom throughout the day, which was very distracting. I can plan a day out and not have to rush home to meet a PCA. I can drink a half bottle of wine with my friend Doris and realize that I have the alcohol tolerance of a teenager. And the coolest thing ever - I can urinate in the bushes when there's no restroom around!

Tuesday, July 12, 2016

Becoming Lady of Liberpee

Image Description: A birth certificate for Peetee P. Wolinsky the SPC made by Emily's friend, Ali Kittylegs Ramos.  

Before I go on a very long rant about my Supra Pubic Catheter (SPC) placement with all the gory details (plus photos!), I’d like to reveal the copy-changed song that I’ve written to the tune of “My Country, Tis of Thee":

"My Peetee, 'Tis of Thee"

My Peetee, 'tis of thee,
Sweet void of liberty,
Of thee I sing;
Land where pee math died,
Land of urologists’ pride,
From ev'ry toilet's side
Let peedom ring!

My native Peetee, thee,
Land with the yellow sea,
Thy name I love;
I love thy beers and swills,
Thy wine and soda chills;
My heart with caffeine thrills,
Like that above.

Let urine swell the breeze,
And fall from all the trees
Sweet peedom's song;
Let ureters awake;
Let all that piss partake;
Let zippers’ silence break,
The drip, drip, drip prolong.

Our joyful hearts today,
Their grateful tribute pay,
Happy and free,
After our toils and fears,
After our blood and tears,
Strong with our hundred years,
O Peetee, to Thee.

Nesting Pre-Peetee

In the days before my surgery, I spent many hours talking to friends with neuromuscular disabilities (NMDs) who had SPCs and got the lowdown on what supplies to buy to have on hand for when Peetee came home. Let's just say that I went a little nuts.

Someone would suggest that I buy 2x2 gauze pads with paper tape; someone else would say 4x4 gauze pads with a different tape. I bought both. Someone would suggest that I use a leg bag that was 900 CCs, but then someone else would say that I should get a 2000cc bag (that holds like 68 ounces of water). I bought both. Someone would tell me to get a portable urinal so I could pee on-the-go once I was off the bag, so I spent hours looking on Amazon for the right male urinal. All in all, after sincerely taking in all of these suggestions, I ended up spending enough to probably open my own Walgreens. Funny enough, yesterday, after a follow-up call with a nurse, I learned that I barely need any of this. I can clean my stoma with soap and water and it is “up to me” whether I want to cover it with a simple piece of gauze. So yeah. Jokes on me. BUT, dear readers, if you ever get seriously wounded or just need to store urine somewhere, please just stop by my house and I’ll triage you.

This is the sexy "camping" male urinal that I bought from Amazon. If you want one for yourself, make sure to make it an Amazon Smile donation to NMD United. Image descriptions: 1) Emily holding a small container that fits in the palm of her hand with a lid. 2) Emily showing how the bag that will hold the urine pulls out of the bottom of the container. 3) Emily pretending to drink from the urinal. 

Not only did I buy enough supplies to outfit a small hospital for a year, I also embraced my morbidity. In the days before my surgery, I got my last wishes in order just in case I didn't make it out of the 15-minute procedure alive. I wrote my advanced directives, designated my power of attorney, filled out my registration to have my body donated to science, and wrote my last will and testament. I know, I know, but dammit, I was prepared - for anything….

I couldn't eat or drink after midnight the night before the surgery and Peetee's delivery wasn't scheduled until around noon (which ended up being 1:30 PM) the next day, the night before the big day, Dan and I went out to my favorite restaurant in Austin and I ate like it was the last meal of my life. I actually fell into a peaceful sleep that night. Again, I was prepared - for anything...

Peetee is born!

Aside: The more I try to not sound like a new parent, the more I sound like a new parent. Apologies to all of the *real* parents out there who are probably scoffing at my trivial comparison, but it’s really creepy how much I fawn over this tube coming out my lower abdomen. I gotta say, Peetee is really adorable and cute. He’s even a bit bigger than average - a size 20 french, which is basically the size of a McDonald's milkshake straw. 

It was a fairly temperate and breezy day when I left with Dan to go to the hospital to get my placement. I was told to arrive there a little before 10:00 AM, so we showed up at 9:30 AM and I was quickly placed into my room as I awaited surgery. Nemo, my Personal Care Attendant (PCA)/Sister From Another Mister (SFAM) for the last 16 years, showed up about an hour later to help me get changed for surgery.

Top picture description: Dan eats a peanut butter and jelly sandwich. Bottom picture description: Nemo, my PCA of 16 years, arrives to help me get ready for surgery. Emily is lying in bed with a blanket over her and a hair cap on. Nemo stands next to the bed looking back protectively towards Emily.

I haven’t had surgery since 1988 when I my spine was fused together to stop scoliosis from progressing and turning me into a human pretzel. I felt a ton of anxiety about going under anesthesia. Anesthesia presents as a very dangerous thing for most people with neuromuscular disabilities (NMD). So often I hear stories about people with my disease going in for simple procedures, like Peetee, and not coming out alive. Why is this? Folks with NMDs  experience compromised lung function and mechanical breathing due to weakened voluntary muscles, so things can go downhill fast with the wrong team. This knowledge prompted my end-of-life preparations mentioned above and you can probably imagine that I was a nervous wreck.

The first big step before the anesthesia is getting the I.V. line, and that is no easy task for someone with veins that have been depleted of water for 39 years. My veins are like burnt and shriveled string beans. I tried to plump them up a bit with some water the day before, but it was a complex feat requiring extra pee math calculations. Thankfully, my support group on Facebook came to the rescue again and gave me a ton of great suggestions (like the water and putting a heat pack on my arm). These tips led to my very first needle stick which actually worked.

Image Description: Emily's hand showing off her I.V..

With that victory in hand, I then got ready to meet with the doctors. I can’t say enough about the entire medical staff who took care of me at Round Rock Hospital. Sarah did my I.V. and she was a rockstar. I met with the Anesthesiologist, Dr. Patel, and he did his homework by speaking with my pulmonologist and neurologist. He assured me that he would take the lightest sedation route possible and chose a drug that wouldn’t compromise my respiratory system. Patel said that I would take a nap for about two hours on the same drugs that Michael Jackson used (he he, sha mon!) and wake up (not die) with Peetee by my side. The surgical nurse, Sue, promised me that she wouldn’t move my body in weird ways (I heard a horror story of a woman getting her legs broken when being positioned for surgery) and that she’d take good care of me. And finally, my urologist, Dr. Grady Bruce, a specialist of female urology, came in and met with me before the surgery. He was optimistic, patient, and I got the feeling that he could do the procedure with his hands tied behind his back.

Wheeling into the operating room and looking around a bit was the last thing I remember before Peetee's delivery. There was a lot of bright white equipment and lights and….

I woke up.

My body and kidneys must have waited for Peetee forever and the minute he showed up, they welcomed him with open ureters. My urinary tract has been dancing a jig of joy since 1:30 PM on Friday, July 8th. By 4:00 PM, I arrived home and started drinking bottle after bottle after bottle of water. My friend, Stephen, one of the sweetest guy's I know brought me a bouquet of bottled water instead of flowers after the surgery. I finished those suckers within the first two days.

Image Description: A line up of seven different varieties of bottled water. This is the water bouquet that Emily's friend Stephen brought her.

The bag of pee that I am currently pissing in sits inside a purse that hides it. Since Peetee arrived, I’m constantly looking in the bag and monitoring how much urine I’m sending out. I feel like a kid checking his Halloween candy as he goes from house to house. I actually get giddy seeing the bag fill up and I can’t even express the joy I have emptying the bag into the toilet BY MY DAMN SELF. Never in my life have I looked forward to going to the bathroom on my own. On. my. own. Cue Les Mis.


Since Peetee is still getting used to his new environment, I'm being gentle with him, and not putting a lot of stress on my bladder. I hook up to a bag for 22 hours of the day and only take it off when I'm showering or getting changed. When I'm bagged, I don't feel the urge to pee at all because Peetee catches the urine heading to my bladder before my bladder gets it and diverts it to the bag. At night, I have a bigger bag that I use and it hangs off the side of my bed. It's not exactly sexy, but it's out of the way. Eventually, once I heal some, I'll no longer be bagged and I'll just use a flip-flow valve, which will be attached to the end of the tube. When I need to pee, I'll flip the valve and pee into a bottle or water the garden or write my name in the snow/sand. Changing to the different bags or taking them off is a bit tricky. I'm proud to say that I've only peed on myself a few times and peed on poor Nemo once. She handled it like a champ though, despite all the screaming.

Image Description: Emily emptying her bag in her backyard. She's leaning to the side of her wheelchair, holding the bag, and pointing the spout downwards toward the grass. Side note: Dan told her to do it. 

Thankfully, because Dr. Bruce did such a great job with the placement, I've had to deal with very little discomfort and/or pain. Occassionally, I feel a twitch here and there, but Peetee is a good boy when he's not messed with too much. I'm wearing loose pants and skirts and I've finally got the bandage thing down (less is more). Initially, I was going a bit overboard with the protection. I'd compare this to putting sixteen layers of clothing on a baby when it's only 50 degrees out. Peetee prefers a bit of air and is not a huge fan of tape.

Again, my friends who have been down this road helped so much with advice on how to care for Peetee. I want to take this opportunity to apologize to all of those same friends on the internet who had to endure a bunch of top-of-the-crotch pictures sent to them in my quest to set-up the right bandage situation. Peetee is right over my pubic bone and about three inches down the "happy trail" from my navel. It's almost impossible to take a picture of Peetee and not get a some of the goods, which would be great if I were some kind of porn star, but Peetee and I will never be ready for that kind of publicity.

Image Description: A yellow tube come out of skin. This tube is set about an inch from Emily's pubic bone. The tube is about the size of a McDonald's milkshake drinking straw and going off to the side of her body.

4 Days Later

It's been just four days since Peetee arrived and I'm already noticing a physical difference. My goal is to drink approximately 80 ounces of beverage per day and I've met or gotten very close to that goal since I've started. I'm avoiding pretty much all kinds of beverages for now except for water. My body deserves water. It's 10:40 AM and I've already drank about 30 fluid ounces of water. My skin feels softer and looks clearer, my energy levels are improving, and I'm not as hungry. There's an inexplicable feeling of satisfaction that I carry around with me along with my bag of urine.

Image Description: A full body shot of Emily sitting in her power wheelchair at the end of her workday. A black leather bag is attached to the front part of her arm rest and discretely hides the bag of pee inside of it. Emily is wearing a long skirt, a white t-shirt, and a light sweater. Her dog, Yoli, is pictured in the background. 

Just like Dr. Bruce said, I was back to work on Monday morning. And yesterday morning, I noticed my bag was getting full, so without having to call for help or really having to say anything to anyone, I quietly left my office, went down the hallway, hit the automatic door to the bathroom, went into the stall, took my pee bag out of it's purse, flipped the valve at the bottom of it, voided my urine into the toilet bowl, got some toilet paper and cleaned the valve as I closed it, reached over, flushed the toilet, put the bag in the purse, cleaned my hands and went back to the office. It took only took five minutes to experience one of the most liberating moments that I've ever experienced. Well, not exactly five minutes - more like 39 years, 2 months, 8 days, 13 hours, and 30 minutes.

Wednesday, June 29, 2016

Introducing The Urination Chronicles

My neurologists didn't have a bunch of good news for my parents on the day they declared my diagnosis of Spinal Muscular Atrophy when I was 18 months of age. They also didn't have a lot of insight into how my disability would progress. Would it take months or years for me to stop crawling, climbing, and holding onto the edges of furniture to steady myself as I took steps? Would it take months or years before I ended up in a manual wheelchair full-time? When would I use a power wheelchair? How would I fight colds and congestion without the ability to take a deep breath? Would I look "normal"? Would I be able to attend school or work full-time? Would I fall in love? Would I need assistance with getting dressed, doing my hair in the mornings, and going to the bathroom?

Going to the bathroom 

Taking a piss has proven to be one of the most disabling aspects of my disability, if not the most disabling part. A close friend once jokingly told me that her disabled friends would categorize the severity of one's diagnosis not by symptoms, but by the ability to pee independently or not. If you could pee on your own, you were some sort of "Super Crip" with super pee powers. In fact, I often kidded with friends when asked what my superpower would be if I could have one. Invisible cloak? Nah. Flying? Nah. My response: the ability to pee out my elbows. Not only would I be able to relieve myself easily, my elbows couldn't reach my mouth, and I could use my power as self defense. The support group for adults with neuromuscular disabilities that I belong to on Facebook discusses the ins and outs of negotiating "pee math" (a concept coined by one of our members) on a daily basis, which I'll go into more detail about soon. Peeing rules our world; it affects how we work, socialize, have sex, travel, eat, drink, and sleep. It affects our bank accounts. And finally, it affects our health.

Thanks to Texas and its wacky ideas of social services for the disabled, I am granted the privilege to pee three times a day. Once at approximately 6:55 am, 1:25 pm, and at 9:50 pm. My Personal Care Attendant (PCA), paid approximately $9.75 per hour by the State, meets me at my house, transfers me to the toilet, helps me shimmy my pants down. I pee. She helps me wipe my ass (on my strong days, I do the wiping). She helps me shimmy my pants back up and then she transfers me back to my wheelchair. It takes about 20-40 minutes each time leaving me with the leftover time to accomplish all the other stuff I need to accomplish while surviving without muscles.

Did I mention that a lawmaker, who can use the bathroom as much as he or she wants, allocates the number of times I get to pee per day? This is where the great disconnect between government and humanity happens and this, my friends, is where the Pee Math comes in.

Pee Math 101

For me, the more ounces I drink, the faster it is that I'll process those ounces in my system. If I have to wait approximately eight hours between taking a piss, I'll need to carefully plan how much I drink and when I drink. I rarely drink more than 20 ounces per day and when I drink, I strategically plan to drink about an hour before my help arrives so the fluid has time to move on down the yellow brick ureters. Limiting my intake works, but most days, as the minutes creep ahead, I start feeling the urge to go way before I can get relief.

As I write this essay, I have to pee. The pressure is distracting. It's hard to listen to people who sit down in my office and seek quality advice when my bladder is full. It's painful. I look at the clock over and over again. I sometimes call to check on my PCAs to see if they are on their way. I remember as a child, people thought I was a little odd because I'd sit and wiggle/dance to no music. I'd sway side to side like Stevie Wonder. No, this wasn't a tick related to my disability; this was me curbing that need to pee. Sometimes if you shake, shake, shake your booty the urge lessens.

On the rare days that I miscalculate my pee math, I have to pay someone out-of-pocket to come meet me and help me pee. Usually, because of my luck, those days seem to never be the days when I have nothing going on. Usually, they involve some kind of social interaction that I'm anxious about. Maybe it's a dinner date with a new friend, a job interview, or a doctor's appointment. I'll try to control the amount of water I drink, but on those days, every ounce goes through me like a shot.

I'm proud to say that I've only had one "accident" in my 39 years. My one and only accident occurred in second grade. I was waiting for my teacher to finish her math lesson so she could meet me in the bathroom and help me get on the toilet, but unfortunately for me, the kid in the front of the room was as dumb as rocks and kept asking stupid questions (this is where I first learned that some questions are actually stupid questions). I remember I wore this cute little dress and leotards. The warm urine slowly filled my leotards as tears and snot fell down my face. It was humiliating and I vowed from that point on to practice a different kind of math. By the time I finished elementary school, I was the Albert Einstein of Pee Math, able to hold my pee for up to 16 hours.

Announcing my retirement

This year, after going through a handful of days where the intake of fluid times the hours between scheduled assistance becomes accelerated at an unusual rate, I decided to retire from my side job of Pee Math Accountant and Auditor. 39 years of dehydrating myself and sacrificing so many special moments of my life for the sake of draining my bladder has taken its toll. I'm done. In fact, I should have been done years and years ago, but unfortunately I didn't realize that there was a better way until I joined a community of adults with neuromuscular disabilities who had found a way to pee free.

By the way, it upsets me greatly that I didn't know about these urination alternatives earlier in life, which confirms my theory that people who can pee without assistance should not be the people counseling, advising, treating people with my disability. Just like the my Texas lawmakers, the able-peeing doctors and personnel who ran the Muscular Dystrophy Association clinics I went to growing up don't really get pee math. They assume that our PCA care magically appears - poof! That we don't break our legs getting hastily transferred onto the toilet by someone who doesn't have the strength to lift us. They assume that we don't have social lives; or wouldn't like to take a trip on a plane for longer than a few hours (planes' bathrooms aren't accessible); that we don't need or want to pee after having sex to avoid infection.  Bitter rant over. Point is - I found an alternative and I'm officially breaking from the chains of urination slavery and getting a Supra Pubic Catheter (SPC). I'm naming my SPC and I'm naming it "Peetee".

Tell me more about Peetee

My SPC or Peetee is scheduled to arrive on Friday, July 8th at noon. Basically, it's a tube that will be inserted into my bladder through a stoma (open hole) created just below my bellybutton and above my pubic bone. It won't get in the way of my lady parts and the catheter will tap my bladder like a keg. I will be able to pee normally out my urethra, but with Peetee, I'll also be able to drain my bladder through the tap into a bag or straight from the tube into the toilet. The surgery is outpatient. I should be in and out of the hospital over a couple of hours. My urologist says that I should be back to work on by Monday. I'll need to change out the tube on a monthly basis for the rest of my life and I'll need to take really great care of it to prevent infection. Oh, and if I hate Peetee, it's completely reversible within an hour's time. Peetee is not a perfect solution, but it will allow me for once in my life to stay hydrated without constant interruption.

Am I nervous about surgery? Yes. Am I frustrated that I have to go through the risks of the surgery and deal with a tube hanging out of me for the rest of my life because Texas hates disabled people? Yes. Am I sad that my bikini bod will be marred by a plastic tube sticking out of it? Whatever. Am I excited to drink more than 20 ounces of fluid a day? Yes. Am I excited about a level of independence and freedom that I've never known? Absolutely.

Stay Tuned

In the coming days, weeks, and months, I intend to write more about my quest to pee free for those who are interested in learning more about this journey and to hopefully inspire other people to consider taking their own journey. I realize peeing isn't sexy to most (unless you're R Kelly), but for me and millions of people with disabilities, peeing is a huge challenge. I want to explore this as thoroughly and as candidly as possible with the goal to educate and enlighten. Thanks for reading!

Image Description: A small plastic cup filled about 2/3 full with urine. It has a lid on it.