Summertime and the Livin’ Ain’t Easy: In Which I Dictate a Blog Into My Phone Because I’m Stuck on the Floor

I was just dropped off at my home in hundred degree weather. I’ve come from an infusion, a welcome quiet two hours once a month where I sit and allow my disease modifying drugs to drip drip drip into my veins. No side effects, no real irritation barring the occasional person answering his cell phone in the infusion room or a too loud television tuned to a cake decorating competition. I am sitting outside the door of my condo. After multiple tries to get the key in the lock with arms heavy from the heat and legs that can no longer stand. I need to work. I need to get inside. But first I need to muster the energy to stand up and get the key in the fucking lock.

Is it, doormat? Is it?


This summer has been pleasantly cool so far. Cool is relative, of course. Mid 80s isn’t cool, but it is reasonably doable all things considered. I can manage a walk from the house to the curb in 85° heat. Today is something else entirely. Remember playing hot lava as a kid? My current movements bring it to mind, except now the lava presses in from every angle. I move from fence to sign post to parked car with the desperation of a small child trying not to touch the floor but with fewer shrieks of delight. I grasp my way across the sidewalk, praying I don’t hit hit the asphalt. 

I made it to my knees just long enough to get the key in the lock. I turned the key and nothing happened. It turned a little harder–still nothing. I hoisted myself back up high enough to have a little more leverage, turned again, and the door opened. I have now crawled inside and I’m wondering how to get the key out of the door. Do I call my upstairs neighbor? Nope. I just remembered he’s out of town. I know I won’t sit here all day long, but it sure feels like it.

MS is an exercise in learning one’s limitations, adapting, and often surrendering. In the heat, there’s no choice but to surrender. There’s very little to be done. Because I participated in the MS Walk, I was sent a shitty little fan to plug into my cell phone for cooling purposes. It works about as well as someone blowing into my face. I have a cooling belt somewhere. It looks like the supports warehouse workers wear and can be filled with little ice packs. It lasts about 20 minutes in heat like this, and it’s too unwieldy for everyday wear. There are very fancy cooling vests (all very stylish I assure you), but I gave up vests in the late 80s.

So now I surrender, lying back on the cool floor of my condo, awaiting the energy to stand. To walk. To work.

I just stood on my first try. I walked 8 feet to the kitchen counter where I now sit wishing the glass in front of me had more than two sips of water in it. I’ll make it to the fridge to refill eventually.



Rebecca Scott scorebecca@gmail.com

12:49 PM (8 minutes ago)

to me

made it to my knees just long enough to get the key in black. I turned the key and nothing happens. It turned a little harder, still nothing. I hoisted myself back up pie enough to have a little more leverage on my side turned again and the door opened I have now crawled inside and I’m wondering how to get the key out of the door do I call my upstairs condo neighbor? Nope, I just remembered he’s out of town. I know I won’t sit here all day long, but it sure feels like it.

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Compose

On Sparkling: In Which I Examine Why I Don’t Write

Sadly, my “dolls” have the opposite effect.

My friend Patrick can be relied upon for unexpected and amusing non sequiturs delivered via text. So I was intrigued when he appeared on my phone last week saying, “I’ve given this a lot of thought.” I watched the three dots expectantly, wondering what delight awaited me.

“You suck at regular blogging.”

Hm. That was unexpected but hardly amusing, especially because it’s painfully true. Regular blogging falls somewhere between carrying a full cup of liquid without spilling it and doing jumping jacks on the list of things I suck at. Four blog ideas have rattled around my head for months, and I haven’t managed to put finger to keyboard since January. What the hell is going on?

On the surface, there’s plenty. I continue to work part time. My leadership coaching program also continues, now with the bonus of three pro bono clients. I have scattered doctors’ appointments plus regular wellness ones (chiropractor, massage, etc.). It isn’t the most demanding schedule, but adding anything to the mix is hard when showering requires a 15 minute recovery period before I can make it out of the bedroom. If I work all afternoon, lifting my arms to the keyboard after hours is an exhausting proposition. On the rare occasions I have remaining energy, I tell myself should devote it to exercise (something I also suck at doing regularly of late).

Here’s the thing: I could schedule my day better. I could write in the morning, as I’m doing right now. I could make it a daily habit. I genuinely like (and hate*) writing this confessional-informational blog. So what gives? Why can’t I get my shit together to do it?

Luckily, there’s a tool for that! Immunity to Change (ITC) posits that “failure to meet our goals may be the result of an emotional immune system that helps protect us from the fallout that can come from change–namely disappointment and shame.”** Last spring I had the good fortune to participate in an ITC workshop delivered by two of my brilliant colleagues. What was my improvement goal?

This is an Immunity Map worksheet. You can get a blank one online.


I AM COMMITTED TO MAKING TIME TO WRITE ON A REGULAR BASIS.


It’s been a year, and I have yet to reach my goal. Still, the insight I got from this exercise has stuck with me. The basic idea of the chart is that column one is what I want. Column two is what I’m doing (or not doing) that prevents me from achieving my goal. Column three begins to unpack the why of it all, listing good reasons why I’m behaving the way I am. And column four both blows things to their extremes and reveals some underlying and (in my case, at least) previously unexamined truth.


I assume that now that my body is failing me, all I have to offer are my smarts and wit — and if I don’t sparkle in all things I do, people will stop putting up with my limitations – and if people stop putting up with my limitations, my friends (and spouse) will leave me – and if they disappear, I will have to move back in with my parents.***

My friends, in rational moments, I don’t think you will abandon me just because my body is in decline. That said, I must acknowledge that I worry constantly about being a burden. It’s no fun watching my 80-year-old mother, who has her own mobility issues, roll my suitcase into the airport and hoist it onto the scale. Or making half a dinner only to get out of the kitchen because I literally can’t stand the heat. Some nights after going to bed I ask Neal to fetch three separate things on three separate trips because I can’t do it myself (nor can I gather my thoughts enough to make a single request). If you socialize with me, I will sparkle with all my might to make up for the fact that I’m likely to need you to go for a napkin run or walk me to the bathroom or, heaven forbid (but it’s happened), cut my damn food for me.

It may seem silly that this same impulse arises with blogging since I can’t very well ask anything of you except your attention, but I’ll be damned if I’m going to serve up mediocre slices of my beautiful, mostly intact mind for your consumption! You deserve better, especially since I am burdening you with my trials and tribulations. (See column four’s “being whine-y = being a less good friend.”) As I’m trying to wrap this up, I’m worried that this hasn’t been funny enough and that I don’t know how to stick the landing. Perhaps I will let it go this time.

Pat, I’ll try to be easier on myself to ensure you have something to read on your commute. Thanks for inspiring me to write again.


*I don’t trust people who write who don’t have a healthy dose of hate with their love of the craft.
**
I pulled this quote from a Harvard Extension School article, which I highly recommend but is unlinkable. Google it! There’s also a whole book about the subject. And this terrific video.
***Mom and Dad, I love you dearly. I just don’t want to live with you. I hope you understand.

On Being An Only: In Which I Examine Life As the Sole Disabled Person in the Room

A nice/terrible thing about living with MS is that it’s often invisible. As mentioned in previous blogs, the occasional incontinence mishap can be a private hell, which is indeed a hell but is at least private. Fatigue is similar. A common complaint of people with MS is people saying, “But you look so good!” If you’re vain like me, you tend to focus on the “look so good!” bit. Still, when others focus on the outside, the inside feels diminished. Disregarded. And that can hurt.

In some ways, it was a relief when I began using a cane regularly. It’s a sign to the outside world that says, “Hey, this person is different.” The general public doesn’t always notice that sign, but, even when I’m not shown the courtesy I’d like, when something goes wrong–a dropped glass, a stumble–folks see the cane and think “well, sure.” I’ve moved with an M-acceSsory* for a long time, and I’ve often thought about how I am perceived. What I haven’t thought about is my only-ness.

Until now.

This cartoon came to mind when thinking about my cane.

I just finished my first three days in Georgetown’s Institute for Transformational Leadership’s Leadership Coaching certificate program. On the first day, I rode in on my red scooter with a big smile on my face. I led with my MS in my introduction, which is perhaps a topic for another blog–how much of my identity is tied up in my disease.** I graciously accepted help when classmates offered to carry my tea, my lunch plate. I asked to remain in my place and have others join me when we broke into groups. The first day was humming along beautifully. Then I fell.

You can’t ask for a nicer bunch of people to take care of you post-fall than participants in any program involving the word “transformational.” These people are as empathetic and caring as they come. I was helped into a chair. I was asked if someone could fill mug I was holding. I laughed and said, “Yes, but sadly you cannot pee for me!” I agreed that scootering to the bathroom would be best. One of our co-directors scurried to figure out which restrooms were handicapped accessible. I cried only a little when reminded that I didn’t have to be as strong and positive as I project. The remainder of the course was filled with epiphanies, head scratching, deep conversations, laughter, doubt, and so many questions.

“Will stabilizing your chair be easier? When you sit? When you stand?”
“Can I get you anything when I go out?”
“Hey, can I get out anything when I go out?”
“Are you sore from yesterday?”
“Am I asking you if you need help too much?”

That last question really touched me, because it got at a part of my experience people don’t often consider. Being taken care of is a gift. Needing help all the damn time sucks. And in those wonderful moments when I don’t need help, someone asking if I do reminds me that my being okay and self-sufficient is not the norm. Please do not misunderstand me: I will never be upset with someone for asking if they can help me, because I know the impulse comes from kindness and concern. At the same time, one does tire of politely declining kind offers.

In class we’ve been instructed to “notice our noticing,” and what I’m noticing is how fucking lonely and frustrating it is to be an “only.” It’s a term that came up in a diversity discussion. In a story our instructor told, it was how the sole African-American in a group self-identified, and it hit me hard. Looking around, I thought, “Oh my god. That’s me! That’s me in almost every situation.” How bizarre to have lived a thing for so long without even thinking about it! I do not surround myself with MSfits (to borrow a term from my blogger soul mate, Dave), nor do I spend time with people with mobility issues. On one hand, I realize they’d be no use if I needed tea carried carefully across the room, but, on the other hand, they would understand the dual nature of offers of help.

I haven’t spoken much in the large class settings (something else I’m noticing), but I took this moment to speak up as we all grappled with how to acknowledge other-ness in a coaching setting. What I said was something to the effect of (but likely less eloquent than) “Speaking as a different kind of only, I will say that any time someone has asked about my situation from a position of kindness and curiosity, I have been happy to engage with them. It won’t be a way in for everyone, but it is a starting place.”

I suppose if there’s a takeaway from this blog it might be that asking “How can I be most helpful?” once and trusting people to speak up about emergent needs is likely the best approach. It is for me, at least. Also, if you know people with MS*** who might like to be my friend, please send them my way. We onlys (onlies?) have to stick together.

*I know. Stop trying to make fetch happen.
**We’ll table that for now since my main reason for starting there this time was explaining why I was disregarding the instruction to stand.
***Or, better yet, if you are a person with MS who might like to be my friend, please reach out!

The Urethra Monologues, Part Three: In Which I Look Forward to Twenty Shots to the Bladder

For those of you tuning in late, here are parts one and two.

During my first two years self-catherizing, my urologist tweaked my medications multiple times to further reduce the frequency of my urination–and to eliminate my nocturia, which is a fancy way of saying “the need to get up in the middle of the night to pee.” Vesicare was rejected because it made me so thirsty I drank enough to offset any positive effects it might have. Oxybutynin was replaced with a higher dosage of Doxazosin, which was eventually revealed to be the cause of my leakiness. So long, Doxazosin! Then Myrbetriq came along and put the rest to shame. Effective with no side effects (for me, at least), it was a godsend. A very expensive godsend ($60/month copay if memory serves) but a godsend nonetheless.

Still, I almost never peed the mere six times a day that self-catherization initially promised. It was time to try something new. In the summer of 2015, my neurologist suggested a urogynocologist with a compulsive nervous laugh and a penchant for quizzing me on Shakespeare while examining my ladyparts. What she lacked in bedside manner, she made up for in action: it was time for Botox at last! 

My first appointment was delayed due to insurance issues and then a UTI (something that’s no longer an issue since my doctors now prescribe a week of antibiotics prior to the procedure), but on January 19, 2016 I happily wrote the following to my family:


After months of anticipation I received my first dose of bladder Botox today. As I (over)shared on Facebook, my nurse’s running narration of the prep included her referring to my urethrea, which did not make me feel I was in the best hands. Still, she did her work well enough (filling me with numbing liquid and gel) that the needles didn’t hurt much going in, even in the inexperienced hands of a urogyno fellow. I continue to find the office lacking in efficiency and am tiring of having to discuss Shakespeare with my legs akimbo. If this works, though, it will all be worth it.



It was totally worth it! With Botox working with MS to almost entirely immobilize my bladder muscles, I reached the magical six pees a day goal and even slept through the night. The effects usually last nine to twelve months. I initially received Botox again in early 2017 and then was scheduled for a second treatment the following September when I ran into prior authorization issues. Not familiar with prior authorization? It’s a fun thing insurance companies do where they receive a prescription from your doctor and then say, “Are you sure? Please fill out additional paperwork to prove it.” Because I also receive Botox injections in my neck, it takes some administrative finesse to juggle my authorizations since (also fun) you cannot have two prior authorizations for the same medication simultaneously. It took 40+ calls to my doctors, the pharmacy, and the drug company to straighten everything out. After a lot of stress and even more tears, I finally got my Botox in February of this year.


Comfortably Numb

I also got a new urologist, one who laughs at appropriate times and has a helpful, responsive staff. She administered my latest set of Botox injections this week. Curious about the procedure itself? Lucky for you I took notes.

  • First I stripped from the waist down (in prior visits, a hospital gown was involved) and lay on a table with my knees up (no stirrups, which felt more dignified than previous procedures).
  • The nurse swabbed my urethra with iodine and then used a large, needleless syringe to inject my bladder with lidocaine jelly. 
  • A catheter was then inserted to transfer lidocaine liquid into the bladder.
  • Lidocaine is a numbing agent, by the way, and it takes a while to do its stuff. To ensure it covered all of my bladder walls, I lay on my back for ten minutes and on each side for five. (This was much better than being told to “move your hips around,” which is what the urethrea nurse suggested.)
  • I received another swabbing and then another squirt of lidocaine jelly for good measure.
  • A new catheter was used to empty my bladder into a big cylinder,
  • Then it was time for the main event. An itty bitty lighted scope was inserted through my urethra, et voila! The inside of my bladder appeared on a screen to my left. Next thing I knew, I saw the needle within the scope puncturing my bladder walls, leaving behind a bright red trail of blood each time it exited. The sensation is tough to describe . . . it’s a sort of pressure followed by a light sting. After a few minutes of discomfort, the twenty injections were done. I was given an antibiotic and sent on my merry way.
Now I await the results, which take a week to ten days to kick in. I look forward to sleeping through the night again, as well as no longer being the weak link on car trips. Sometimes it takes some discomfort (and tenacity) to improve your quality of life.

Dance Dance Termination: In Which I Wax Nostalgic About My Dancing Days

When I was four years old I began taking ballet classes. Clad in a black leotard, pink tights, and pink ballet slippers, my best friend Suzy and I entered the glorified trailer that was the original home of the Augusta West Dance Studio together. In spite of being terrified by the ancient, chain smoking receptionist Tikie and disappointed that I’d have to wait months to wear a tutu on stage, I fell in love instantly. I loved the New York City Ballet towel on the wall. I loved my teachers, Miss Cindy and Miss Diane (and later, Miss Bea). I loved the Coke machine in the dressing room that sold grape soda in tall glass bottles. And, most importantly, I loved to dance.

The Rainbow Connection – 1982

Two years of ballet were followed by a year of tap, a few of jazz (oh, the thrill of finally being old enough to take jazz!), and then tap and jazz. Each spring brought the three most exciting days of the dance year: 1) learning what song we’d dance to in the recital, 2) the costume unveiling, and 3) the recital itself, the one time a year we performed on a proper stage. Backstage was magical* and chaotic, as teachers and volunteers tried to wrangle hundreds of excited little girls, swiping aggressively red lipstick across our mouths and begging us to please tinkle before we went on stage.

Lord only knows but it was tap – 1985

Performing was great, especially as a front row regular (which I was, thank you very much), but really I just loved dancing. I was a quick learner, which came in handy when I got older and got to go to dance conferences with the Junior Company. Standing in a sea of young women (and a handful of brave young men), learning routines to “U Can’t Touch This” and Madonna’s “Hanky Panky,” I realized I was not one of the best, but I knew was good. And that ain’t bad.

R.O.C.K. in the USA – 1989

I gave up dance for the theater in eighth grade, a tough call since I’d been promoted to Apprentice Company. Luckily, I was in chorus at school, and that meant I’d get to dance some. This was long before Glee and the glorification of the show choir. Our routines were not complicated–a few grapevines, step touches, and jazz hands would get us through whether we were singing “Let’s Hear It for the Boy” or the Chiquita Banana song. Once a year we’d spend a whirlwind day and a half with a professional, who would teach us choreography for a 40 minute Broadway** medley, which we performed the evening of the second day. It was exhausting, exhilarating, and my favorite weekend of the year.

Some Batman-inspired song that wasn’t Batdance – 1990

I never danced on stage again after high school, but I was an enthusiastic dancer at parties, clubs, bars, weddings, home . . . wherever the spirit moved me. In 2009, five years after my diagnosis, I signed up for a class to learn the ubiquitous “Single Ladies” dance. I enlisted a handful of coworkers to join me and showed up in ancient Umbros and a tee, optimistic but not foolhardy enough to follow the studio’s suggestion that we bring high heels. It started out okay. My brain grasped the steps just like it used to. My body was slower. Still, I hung in there and was terrible but happy. Emboldened, I signed up for a Britney Spears class. Again I started okay, but my body grew clumsier the more tired I got. I rammed hard into the women to my left, apologized, and headed for the bathroom where I cried the ugliest of cries. I knew my balance wasn’t great, but was it really this bad? I pulled myself together enough to finish the class. But I never went back.

Note the trophy! Dance Makers conference at Myrtle Beach 1990.

Now I know my limitations. I can indeed throw my hands in the air, but waving them like I just don’t care is not advised. Nor is moving my feet. On a good day, I can shake my ass and move my upper body without support for minutes at a time. Bracing myself against a wall and/or human is usually required. On a rare club visit, I discovered that I do well sandwiched between two people . . . but that isn’t appropriate in most settings.

Rodgers & Hammerstein medley – 1993

I often cry at weddings. The ceremony used to be the trigger. Now the tears come when I sit on the sidelines at the reception. How great is grabbing your friend when “Hey Ya” or “Poison” (or whatever your jam might be) comes on and hitting the dance floor in a sort of eternal return*** celebration of who you were and who you are? I’ll tell you: it’s really, really great. I miss walking like a normal person, but I really miss dancing like one.

*The glorious Sutton Foster grew up in my home town and was one ballet class ahead of me. Everyone knew and loved her, and I met her backstage at my first or second recital. She was super nice.
**One year we had the indignity of performing a Beatles medley. Neither the Beatles nor our chorus deserved it.
***I took a religion class in college that was WAY out of my league, and this very cool concept is the one thing I retained from it.

Stumbling Towards Ecstasy: In Which I Say Orgasm A Lot

I learned about sex under the geodesic monkey bars at A. Brian Merry Elementary School in the first grade. My friend Brandy* stood amid a rapt group of girls, telling us what she’s read in a book she found in her parents’ bedroom. I was shocked. Surely no one would ever do that. Surely my parents would never do that. Ew ew ew.

I got over it relatively quickly. In middle school an article in Glamour led me to my first, accidental orgasm, and, once I got over the initial shock (because, really, who is prepared for that first one?), I was a fan. No need to go into details here–I sorted out what worked for me and happily took things from there.

As I got older, articles about women that were unable to achieve orgasm would cross my path occasionally and I’d wonder who these poor people were, thinking fondly of my bedtime triple from the previous night. Even the fumblings of inexperienced boys could usually get me where I wanted to be. In college I joked that if you looked at me funny I would come. It was that easy and remained so for a long, long time.

I used to have what she’s having.

Several  years into my MS diagnosis, something changed. Orgasms were elusive and could be coaxed out of me only with toy-based assistance. That was a bummer, but, hey, you do what you gotta do, right? I’d read enough women’s magazines to know that vibrator-dependence was normal for lots of women. I’d just be one of those women now. Sigh.

My sex life was humming (get it?) along just fine until one day the unthinkable happened: I peed. Mid-orgasm. I PEED. I was embarrassed, but maybe this was a one-time thing? Nope. It happened again. And again. I asked my urologist if anything could be done, and he shrugged, saying “Try not to eat asparagus before sex?” So I bought a protective cover for our mattress and worked towel placement to the foreplay. I tried to be grateful to still be amongst the orgasm-havers, but this undesired new kink shook me. As I inched closer to climax, my brain would beg my bladder to get ahold of itself to no avail. The afterglow is less glowy when experienced from a puddle.

As mentioned in previous blogs, my bladder has long been problematic, and the switch to self-catheterization was traumatic but helpful. It had an unexpected upside: those little tubes allowed me to fully empty my bladder whenever I wanted, so, not only could I sit through an entire movie, I also had fewer mid-orgasm surprises. Hurrah!

Then I had fewer orgasms. Way fewer. My brain and body would be in the zone. So close . . . so very, very close . . . and then . . . then . . . nothing. Again, I must acknowledge that lots of women have difficulty achieving orgasms or don’t have them at all, but I WAS NOT LOTS OF WOMEN. Now sex could end in tears, and not the oh-my-god-that-was-amazing kind of tears. These were fuck-you-body-how-many-more-things-can-you-take-from-me tears. I mentioned my troubles to a new, less humorous urologist who swiped a cotton swab along my lady-bits and said, “Your clitoral reflexes** are fine. You probably need a stronger vibrator. Get a Lelo.”

So I got a Lelo, which helped some. Sometimes sex still ends in tears of frustration. Sometimes it ends in a tiny little orgasm after lots of build up. Sometimes, rarely, I surprise myself, climaxing with the speed and intensity of a pre-MS me. And sometimes I just have sex for the sake of having sex, orgasms be damned. That mindset has been tough to embrace, but it’s gone a long way to improving my happiness in the bedroom.

I realize you, gentle reader, may not have MS, but should you face any sexual frustrations like mine, here are a few tips:

  • Get yourself an understanding partner. I’ve tried to keep Neal out of this post as much as possible, but it must be acknowledged that he has weathered my evolving sexual self brilliantly. I’m very grateful.
  • Communicate frankly with that partner.  
  • Figure out what works for you. Read some erotica (and if you find any good stuff, send it my way). Splurge on a fancy toy. Hell, try something kinky. Life is a banquet and most poor suckers are starving to death.*** 
  • Try to get out of your head. Nothing makes you less likely to have an orgasm than thinking “I hope I have an orgasm!” on a loop. 
  • Remember: orgasm-free sex is still sex, and sex is awesome.  

*Fun fact: Earlier that year I told my parents I’d made a new friend whose name I couldn’t remember but I knew it was a type of alcohol. Brandy was that friend.
**Clitoral Reflexes would be a great girl punk band.
***This is, of course, from Auntie Mame and is good advice in and out of the bedroom.

Ch-ch-ch-changes: In Which I Stubbornly Resist Things That Make My Life Better

The trend began with tears at the good CVS on Capitol Hill. The one with aisles so wide that two people can pass each other without having to turn sideways. The one with a nice selection of greeting cards. The one with a rack of canes near the pharmacy.

It was spring 2010. Birds were chirping, and I was raising money for the MS Walk, which I jokingly referred to as the MS Stumble. I walked reasonably well back then, but my stamina was fading. Neal pulled a cane off the rack and wisely/annoyingly pointed out that now might be a good time to give it a try. I didn’t quite point out that he could go to hell, but I did resist, first angrily and then dissolving into a puddle of tears and acquiescence. He paid $25, and I was the defeated owner of a drug store cane, which made its debut at the Walk and became increasingly present and useful over the years.

The next battle was shower grab bars. “They’ll reduce the value of our home!”

A shower bench. “It’s so ugly! Where will we store it?!”

Mobility scooter. “I’ll look old! Besides, where will we store it?!”

And now we’ve come to the biggest change of all: moving from our lovely, old, completely inaccessible house to a beautiful, though less charming, condo. Friends, my brain knows that this change will make my life better, but my heart and tear ducts beg to differ each time I look out at the screened-in porch I have just a few weeks left to enjoy and the fireplace whose final fire I didn’t properly appreciate, not knowing it would be the last. I’m giving up a proper dining room, a jacuzzi tub (which, admittedly, I’ve needed help extracting myself from multiple times), exposed brick, THREE fireplaces . . . and the worst non-spiral staircase imaginable for someone with balance and fatigue issues. 

The staircase loss is an enormous gain, as is the fact that our new bedroom not only lacks a step but also has an en suite bathroom. My day-to-day life is about to get so much better, but still I’m weepy and not just in a sentimental I’ve-spent-six-years-making-this-my-home sort of way. These tears, like those that came before, are about personal loss. Needing to move to a condo is my 41-year-old version of being put into a home. It’s the most tangible (and expensive!) sign yet that my body, my life is different than it was a few years ago. It is–really, I am–weaker. And that sucks. I try to frame it as empowerment rather than loss. (Thank heavens for Neal, who is much better at this than I.) These first few weeks sting, though.

When I watch tv now and see a character walking unassisted, I sometimes think “Oh no! She’s left her cane at home!” That’s how normal previously weird and painful changes can become. I have faith that once I’m ensconced in my gorgeous new kitchen, I will feel sorry for those suckers whose homes have more than one story. It will take some time, though . . . and perhaps some assistance from my new wine fridge.

Aforementioned gorgeous new kitchen. Wine fridge not pictured.

What’s a Nice Girl Like You Doing on a Scooter Like This: In Which We Examine Life with MS for the Vain

Back in middle school, my BFF Sarah and I would spend Friday nights on her four-poster bed, a fan pointed directly at us so we could snuggle under all of the covers no matter the time of year, talking into the wee-est of hours. Our favorite game was “What would you do?” and it went pretty much as you’d guess – one would ask the other the question, invariably about a boy’s action. The game almost always began with “What would you do if [insert boy-of-the-week’s name here] put his hand on your leg and told you you needed to shave?” This led to a flurry of giggles and protestation from the person being questioned because neither of us would ever be caught with less than silky smooth legs when boy-adjacent.

Oh, how times have changed.

I wince every time I catch a glimpse of the pelt on my legs presently. It’s only a couple of weeks’ growth; I am a quarter Italian, so genetics are against me in the battle against body hair. Until the past year I usually could muster up the energy to shave a couple of times a week, if not every other day. Now just standing under warm water long enough to shower thoroughly can leave me with barely enough energy to dress myself after. Wielding a sharp tool partway through the process is ill-advised.

Facial hair used to be managed with the excellent bliss Poetic Waxing kit (a joke I literally just got), but, when waxing sessions ended with my sink covered in green goo but my lady mustache intact, I switched to wax strips. Even that grew too difficult, so I’m now stuck with depilatories, the stink of which send me back to middle school faster than wondering what I’d do if Benji Barton put his hand on my hairy leg. Still, that cream gets the job done, and I am grateful . . .  until I spot a rogue hair requiring plucking.

Intention tremors are the enemy of good grooming, and nothing underlines that like trying to pluck a single hair. NIH says intention tremor “is produced with purposeful movement toward a target, such as lifting a finger to touch the nose. Typically the tremor will become worse as an individual gets closer to their target.” So when I aim a pair of tweezers at a single hair in my eyebrow (yeah, that’s the ticket, my eyebrow), I activate a hand tremor that makes it damned hard to get purchase on that hair no matter how coarse and dark it may be. Add my head tremor to the mix, and it’s amazing that I haven’t poked an eye out.

(Speaking of eyes, my interest in real eye make up–not just a swipe of mascara–sadly coincided almost exactly with my tremors’ onset.)

It would be disingenuous to bemoan MS’s effect on my hair (that which grows out of my skull, that is), as even in my liveliest, steadiest-handed days, I’ve never had much skill in the styling realm. Wash and wear has always been my way, barring a brief and failed flirtation with late 80s peacock bangs. That said, often I can manage merely a half-assed blow dry once shower fatigue has set in.

So what’s a vain girl trapped in an uncooperative body to do? Here are a few things that work for me.

1. Enlist an ally. I found Andre long before MS reared its ugly head. He’s the only person I’ve allowed to touch my brows for over a decade. Without him, my entire forehead would be one big eyebrow. He also is in charge of special occasion make up, because, lord knows, the chance of my expertly creating a smoky eye once is less likely only than my doing it twice in a single sitting.

2. Throw money at the problem. I lasered the hair off my underarms a decade ago. It didn’t go away completely, but I can now go a full month without shaving them before entering dirty hippie territory. Do your research to find a reputable place and keep your eyes peeled for Groupons.

3. Sit yo’ ass down. If you’re going to be vain, you might as well get yourself a vanity! You can buy a proper one or DIY. Mine consists of a smallish table with a desk lamp and mirror atop it plus all of my make up and jewelry. Sitting to primp is less fatiguing than standing. Yay! Plus, bracing my elbow on a table steadies it a bit, making it less likely that I stab myself with a mascara wand.

I imagine a different (and perhaps better) woman would say “Screw it!” and embrace her hairy, unadorned body with acceptance and love. Instead of leaning that way, I’ve gotten vainer. I accept the fact that I will fall in public and that people will think, “Oh, that poor lady! What’s wrong with her?” I just hope the word “pretty” will cross their minds, too.

“Who was that dazzling woman on the mobility scooter?”

The Urethra Monologues, Part Two: In Which I Am Thrust Into the World of Self-Catheterization

Six months after braving Urodynamics, I was still on Doxazosin and pursuing a new approach: physical therapy. I first met with a wonderful woman outside of DC whose office was welcoming and yoga studio-like. I desperately wanted her to take care of me but knew that a 90 minute commute each way via Metro (ah, the good old days when I still traveled independently!) was too much. She referred me to a rehab practice in DC where I worked with a woman who definitely knew her stuff but was significantly less nurturing. Under her tutelage I did Kegel after Kegel to strengthen my pelvic floor. I was sent home with a rented device to put inside me while I did my exercises. It was a hard and unpleasant couple of months, but I did come out of if with better bladder control. For a while.


I continued to see the wonderful Dr. Phillips and returned for my second urodynamics study (some girls have all the luck!) the summer of 2012, two years after my first one. There were some unexpected updates. This time I was treated to a rectal probe (yay!) as well as a real-time x-ray type scan that allowed me to watch my bladder filling up like a balloon, which was a bizarre experience. Even before the test, the nurse scanning my void diary (which included 15+ bathroom trips/day) mentioned intermittent self-catheterization as a possible solution, and, by the time all was said and done, everyone agreed that we should give it a try. Um, right now? Ack.

I cried a little and then pulled myself together and gave it a go with the amazing nurse Hazel talking me through. It was neither easy nor comfortable, but it also wasn’t as hard or painful as I’d feared. And, as horrible as self-catheterization seemed, Hazel unintentionally provided me with some good perspective while giving me instructions. “You’d be amazed how many women look at me blankly when I say ‘Put your fingers around your clitoris.'” I might have to pee through a straw but at least I know where my clit is!

That first week was awful. In addition to having to lug my new catheter samples (including some alarmingly long ones) and lubricant, I carried what is commonly referred to as a “hat” — a plastic container that sat on the toilet seat so I could measure my output and report back to Hazel, who would then help me figure out how many catheters to order. Some days I managed to catheterize maybe twice after rendering my ladybits sore from inept poking around. It is a cruel coincidence that folks with MS who have to self-catheterize also likely have hand tremors and/or poor manual dexterity. Even now I sometimes struggle, but I did eventually get the hang of it. Dr. Phillips told me the goal was to be able to sit through a whole movie, and within a month I could do just that. 

Look I made a hat!
So, since 2012, I have peed unassisted only rarely, usually in what my father charmingly refers to as “floating molar” situations, where even my uncooperative bladder cannot help but behave properly. Self-catheterization has become as normal to me as toothbrushing. I cheerfully discuss my catheter needs and preferences with the staff at 180 Medical. (If, heaven forbid, you or someone you love ever has catheter needs, I cannot recommend them highly enough.) I have bought myself a series of stylish bags in which to hold my stash. I have been grateful not to be a slave to my bladder. Still, when I hear someone forcefully peeing in a stall next to me, I get a little wistful, knowing that will never be me again. Next time you have a really good pee, enjoy it for me.

P.S. Medical lubricant seems to come in two sizes — ketchup packet and large toothpaste tube. Once when I was out to dinner with my friend Donna, while getting up to go to the bathroom, a toothpaste-sized tube clearly marked LUBRICANT leapt from my purse, falling at the feet of our waiter. Donna made a noble effort to kick it out of the way, but it was too late. Lord knows what that waiter thought I was doing with that lube, but he didn’t make eye contact with me for the rest of the night.

The Urethra Monologues, Part I: In Which We Embark on the Long Road to Botox

A few months after diagnosis (way back in 2004), it dawned on me that my frequent urination might be related to my MS. My neurologist put me on a few medications over the years in an attempt to calm this symptom None worked great and some came with annoying side effects like dry mouth, which caused me to drink more, which led to more urination, which defeated the purpose.

In 2009, I asked for a referral to a urologist and met with the cheerful Dr. Shin, a young-ish dude with a fauxhawk (hey, it was 2004) and an easy manner — upon learning we lived in the same neighborhood, he said, “Is it okay if I say hi when I see you? That freaks some patients out, talking to their urologist in public.” I assured him it was fine so long as we weren’t discussing my urinary habits. I believe Dr. Shin was more accustomed to dealing with men and their man problems, so at my next appointment I saw Dr. Phillips, a kind and good humored guy who knew a thing or two about neurological issues. I liked him immediately in spite of what he had in store for me.

And what was that, pray tell? Urodynamics. Sounds a little like a facet of Scientology, no? Of course, Scientology is full of shit, whereas urodynamics concerns itself with pee. Here’s how it goes:

Part one:  I emptied my bladder in a fairly traditional manner (just with the added clean-catch bells and whistles) and then having an ultrasound to see just how empty it was.  I passed this test just fine.

You can be the President. I’d rather be the Pope.

  

Part two: I stripped from the waist down and then sat on a strange throne sort of chair with a round section cut out of the front of the seat. A catheter was then inserted into my urethra, which was pretty damned uncomfortable going in and coming out, but wasn’t bad once in.  Three sensors were stuck on as well – one per cheek and one on my left thigh.  These measured nerve function.  I coughed a couple of times for the warm up, and then I had the bizarre experience of having my bladder filled from the bottom up with saline from an IV bag. I notified Dr. Phillips at various intervals of fullness sensation, later learning that my impulses were pretty normal there, barring my feeling full up a little earlier than most. I was then left alone to expel what had been put in, an awkward experience to say the least what with the sensors and tubes and the fact that I was sitting on a chair, hovering over a funnel and beaker. “Don’t worry if you miss,” said Dr. Phillips. I laughed, secure in my aim. Ha. I missed and missed good, peeing all over the pads they’d left on the floor. When he and the nurse returned, Dr. Phillips said, “You missed!  Honestly, men are so much easier.  We just point and shoot.” I was disconnected. The indignity was over.
At the end of it all I learned that my bladder function was all pretty normal except that my full stream (measured when I was peeing on the floor, I think) was about 40% of what a normal person’s should be.  This was due to detrusor sphincter dyssynergia, which means my bladder is saying, “Come on, guys! Everybody out!” but my sphincter muscles can’t hear them. This explained the hesitancy issues experienced. We started treatment with Doxazosin, which is usually given to men with prostate problems (leading me to believe my dad was right all along – I did, in fact, pee like an old man).  I also stayed on Oxybutynin, which I’d be taking for a while, so we were only adding one variable at a time.

Thus began my attempts to wrangle an uncooperative bladder.