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.
I’m on my fifth physical therapist in this MS journey. The first was a stern older woman who tried in vain to strengthen my pelvic floor. (Yes, I realize that sounds like the plot of a niche porn.) The second was a dumb but pretty and oh-so-strong young man whom I dazzled with my knowledge of 80s music as he threw me to the mat again and again to teach me to fall properly. (He’s the basis of my as-yet-unwritten smutty romance novel.) Next came another sweet and moderately helpful one at the Capitol Hill location of Physiotherapy Associates followed by Danielle at the same site. I highly recommend Danielle; she’s encouraging without being cheerleader-y, good at banter (a must if you’re spending 30+ minutes with someone twice a week), and a solid physical therapist.
Given my recent struggles, though, when it came time for 2017’s PT adventure, I decided to go for a pro. Pro, meaning someone with experience with neurological issues. Enter Molly. Well, first, enter Valerie, a fellow Georgian about to take her PT boards — or whatever PT tests are called. Initially I was a little peeved to have this near-child taking care of me when I’d asked specifically for an expert, but Val had studied up on MS and gave me some new insights and potential tools (a foot drop brace probably is not for me, but it’s good to have tried). Molly, though. Molly is where it’s at. She is a master of the tiniest verbal cue that changes everything. When I told her I felt like I was walking on the edges of my feet, she said not only to strike with my heel — a key thing for folks with foot drop and something you normal-walkers do automatically — but to think about making sure my big toe hits the ground after. I’m not saying I walk well presently, but, if I think about it, I can almost mimic a normal stride. And maybe if I think about it enough, I can someday do it without thinking.
Molly has also concerned herself with my back pain, which has eased considerably while in her care. When I told her it twinges when I put things in the oven, she said, “Okay, let’s practice that!” and handed me a slab approximating the size and weight of a cookie sheet to hold while I did modified squats. I realize this leans more toward OT than PT, but I was thrilled to have someone concern herself with something that matters so much to me.
A week ago I was supposed to have my final session in this PT series, the one where I blow Molly away with my ability to step over 6″ hurdles and walk for minutes at a time. I roused myself at 7, pulled on clothes, ran a comb through my hair and a brush over my teeth, and hailed an Uber for an 8 o’clock appointment. I signed in, paid my $30, and awaited Molly. Instead, Rachel arrived and led me through a series of exercises after explaining that I’d have to reschedule the final evaluation with Molly. Annoying? Yes. But I made the appointment.
A body at rest stays at rest.
When calling to re-reschedule (realizing I could not face another 8AM day), the woman I spoke to said, “Okay, you can do 3pm with Rachel on Thursday.” Rachel? Rachel?! I explained that I needed an appointment with Molly and was informed “Molly doesn’t work here anymore.”
W. T. F.
My trainer moves away. My physical therapist disappears without a trace. I think the universe is telling me not to exercise. I’ve certainly behaved as if that’s true of late, but I’m trying to change my ways. Plenty of people exercise without outside encouragement, and I shall endeavor to be one of them.
A little over a year ago I decided my annual 12 weeks of physical therapy wasn’t cutting it. It was time to consider a personal trainer. The idea terrified me. I pictured hyper, fit ponytailed women cheerfully shouting at me for one more set. I pictured beefy men without a brain in their heads . . . actually, that wasn’t so bad. What I got was entirely different and has ruined me for all others.
LaTasha Barnes is petite but strong AF. Her background includes cheerleading, the army, and competitive Lindy Hop. She has a fierce wit and a delightful knowledge of 90s pop culture. The woman contains multitudes. Even at my fittest, I never enjoyed exercise. I still don’t, really. But Tasha changed my mindset with her good-natured encouragement that never condescended. (The workouts tailored for a body suffering from neurological mayhem didn’t hurt either.) She encouraged me to rest when I needed to and to push a little harder when she thought I could. She helped make me stronger, and, perhaps more importantly, made me believe I could be stronger, which is a really hard thing to believe from the view inside this body.
My perfect trainer was too good and smart to remain nearby for long. She is currently in grad school at NYU, and I am left behind trying to muster up the energy to do some planks on my own in spite of knowing that no one is checking in on me regularly. It’s hard, especially given my recent trough, but I did hit a milestone recently.
That’s the glorious Ms. Barnes in the right corner.
100 workouts in a year is HUGE. It would have been huge for me when I was at peak condition; doing it when I’m arguably at my worst would have been unthinkable without loving and smart guidance. So thank you, dear Tasha. I love you too much to hate you for deserting me. And I promise to keep trying, even without my favorite cheerleader there to egg me on.
My appreciation for Tasha has only increased as I have sought substitutes. I have a physical therapist who is kind and knows her stuff but does not push me. If I wobble a little, I am put in time out, sitting for a full minute to think about what I’ve done. Then there’s the online MS Gym community run by what seems to be a very capable physical therapist and his sweet wife. They send me messages daily telling me that I CAN DO IT! and that THE MS COMMUNITY GIVES THEM LIFE! They are kind and well-meaning, but their sincere youth minister demeanors do not motivate me.
Were they to watch me exercise and be inspired to cry “Super Rebecca!!” I might slap them.
Two months ago, a knot developed in my right lower back, just above my glutes. There it has stayed in spite of massages, heating pads, and stretching. Bending over both hurts and is a bit dangerous, so I’ve stopped doing it. Dropped things remain dropped until Neal retrieves them.
Portrait of the artist after getting her own breakfast plate.
I am a mess.
There is shit all over my house. Each room has two to four items on the floor — discarded clothes, a rogue noodle, an eyebrow comb, a tampon that leapt from its cabinet like a story from the “It happened to me!” section of YM magazine, etc. As I type, I wear a bra attached by a single hook (which took four attempts). I pulled my hoodie on backwards initially, leaving me briefly blind and disoriented.
My legs ache. It’s a soft ache, humming along my IT bands and pulsing quietly in my calves and ass. I’m no stranger to MS-related discomfort, but I’m not used to hurting. Walking is awkwarder than usual with the added bonus that sometimes the aforementioned knot will shout “WHAT ABOUT ME!” inspiring a wince and a need to brace myself on whatever is nearby.
Do you know that I started a new job at the beginning of October? I work from home *and* part-time. It’s magical, freeing me to both make and attend daytime appointments without worrying about nearby cubicle dwellers wondering why I disappear for hours or keep whispering about Botox injections into my phone. This is nice since I have made FIFTEEN calls over the past two months trying to get approval for bladder Botox. I recently was told we’re “very close.”
A disadvantage to working from home is realizing just how horrible the stairs in your charming row house are as you haul your uncooperative body up and down them throughout the day.
An advantage to working from home is randomly bursting into tears without scrutiny, which I have done frequently of late.
I am in a trough, friends; it’s a sort of mini-depression inspired by circumstance. I have at least ten ideas about how to improve my lot, from meditating to eating less meat to alternating cardio and strength training to reading more. What do I do instead? Play gin rummy on my phone while listening to podcasts.
Please remember that image next time you think of me as an inspiration. Sometimes I’m strong and brave. These days I’m more likely collapsed on the couch kicking myself for being undercut with a matching Ace.
P.S. I edited this the following day with a properly fastened bra. Perhaps things are looking up?
I have many things to tell you, dear reader, but we’ll start with an anecdote from today and see if I can still do this writing thing.
Fall is finally here, and I am delighted. Temperatures in the 60s mean a more mobile, energetic Rebecca. I had lunch with a friend today, and, emboldened by the cool air, I walked 2/3 of a block to CVS afterward to retrieve five prescriptions. (Five! That’s not the point of this story, but jeezy creezy that’s a lot of drugs.) I don’t know if it was because I’d been sitting a long time beforehand or what, but my gait was the same step-draaaaaag-step-draaaaag that made me think “I feel you, man” when watching the Mummy move across the screen during Monster Squad.
See ya later, Band-Aid Breath!
I briefly considered buying a “President Evil: Four Years of Hell” t-shirt from the street vendor thirty feet from my destination in hopes of briefly sitting in his folding chair, but I soldiered on, mummying my way into the store and to the prescription counter. When I got there, two people were in line and another, older woman was occupying the sole chair in the handicapped waiting area. As I swayed near the foot health supplies, I saw that the woman had summoned a pharmacist to our side of the counter to offer his thoughts on the very products I was on the verge of collapsing into. “Please. Vould you look at these toes?” she said, REMOVING HER BOOTS. I averted my eyes and focused on staying upright.
At last another pharmacist arrived at the register, and it was my turn at the counter. The podiatry consultation continued to my right as I collected my purchases in a collapsible bag, which is marvelously portable but its soft straps make getting them on my shoulder nigh impossible. Keeping them there? Ha. As I fumbled with the bag, the pharmacist asked if I’d like a flu shot. Why yes! Yes, I would. Go down to the other counter? Sure. Step-draaaag-step-draaaag, don’t drop the bag. (My new cheer!) Bend at the waist and fill out these forms? No problem. I’ll just lean on my elbows while I sign here. Oh, and here, too? Awesome.
“It will be twenty minutes. Is that okay?” “Absolutely. If I can sit.” Shoeless Joanna was still in the handi-chair, so the cashier gave up her stool for me. I was thrilled to have a seat, but hoisting myself onto it after an extended period of standing was tough. Once I got up there, my seated companion notice me and my cane. “Oh, vould you like this seat?”
Folks, it goes on. I had to get up AGAIN to fill out more flu shot paperwork during which time an able-bodied someone sat on the stool, so I returned to the newly-abandoned chair. Foot lady disappeared only to reappear with two pints of ice cream and a Metro Weekly she desperately wanted to give away.
I finally got my damned flu shot and cannot sufficiently thank the woman who came to where I was seated to administer it. Feeling victorious, I tried to stand, bracing myself on the arms of the chair and promptly being pulled back down. Twice. Because my bag, which I had at last successfully pulled onto my shoulder, was resting on the arm of a chair. A lady in line offered help. I cheerly declined and slunk out of the store to climb into the awaiting Uber. (And I mean climb–it was an SUV.)
Even amid the colorful population at our local CVS, I felt like a complete mess. Some days my body does not feel like my own. Man, this is one of those days.
As I discussed in my World MS Day Video, I’m a big fan of throwing things at the wall until something sticks when it comes to improving my physical condition. If a treatment is safe, reasonably priced, and promises not to be too painful, chances are I’ll give it a try. I love it when friends send me articles about new MS-related drugs or procedures. I cannot be bothered to keep up with every MS-related development. I have recipes to make and tv shows to watch, dammit! Information is good, and it’s nice to be thought of. A friend got me to try acupuncture, which wasn’t my jam but was definitely worth pursuing. A friend, who also has an auto-immune disease, recommended cryotherapy after trying it herself. It sounds a little bonkers, but I may give it a shot (especially since I have a coupon). Advice from friends is easy to take because I know it comes from a loving place. And because my friends are not preachy know-it-alls. Yesterday at work, I told a colleague that my recent fall was the impetus for our new kitchen first aid kit. He immediately replied, “You know what you need to do. You need to seal up that gut! I’m telling you, look at the GAPS diet. Cut the carbs. It’s all leaky gut!” I smiled and said, “Well, I’m working on lowering my sugar intake for now.” “Yes, sugar is bad! But the carbs . . . ” I have heard this speech before. Every time I smile. Feign interest. Thank him for his thoughts. I know his need to share this information comes from a kind place, a desire to share what has worked for him . . . so why do I find this conversation so frustrating? A few reasons. First, we are not friends. A friend would know that the day I give up carbs will be the day cryotherapy is offered in hell. Also, his tone is awful – this is what you need to do. I don’t mind being presented with an alternative therapy, but phrasing it as a suggestion rather than a foregone conclusion goes a long way. Finally, we’ve done this dance before. If I haven’t cartwheeled to his office shouting about the wonders of bovine colostrum by now, perhaps it’s time to let it go.
This is an “empathy card” from Emily McDowell. You should buy her stuff. It’s awesome.
A different and yet same-ish encounter happens every twenty or so Uber/Lyft ride. The driver will look in the rearview mirror and say, “What is wrong with your leg?” I explain that I have Multiple Sclerosis. And then the fun begins. “I have an aunt who had Multiple Sclerosis, but she had faith and prayed. And the family prayed. Now she is well. You must pray!” “Jesus will take care of you! You have to pray! And He will care for you!” “You know, scripture says . . . ” I smile. Thank them for their kindness. Exit the car carefully.
I know people say these things (Everything happens for a reason; God will not give you more than you can handle; Jesus take the wheel — just kidding about the last one) because they believe them and believe they will comfort the listener. And I imagine many listeners are indeed comforted. But if, like me, you’re one negative news report from making the transition from agnostic to atheist, these interactions are awkward at best.
I am happy to accept strangers’ (and friends’!) prayers, blessings, and even wacky treatment suggestions. I do so with an open heart. Just please don’t tell me what I should do with my body — or my spirit.
More from Emily McDowell. Seriously, her cards are the best.
I have not gone gentle into disability. Each assistive concession, from buying my first cane to installing grab bars in the shower, was agreed to only after heated discussion, gnashing of teeth, and tears. Neal has cajoled me into the acceptance of things that make my life better at home, and we’ll talk more about them later. Today I’ll tell you about my journey from silent sufferer to squeaky wheel at work.
When I first walked up the white marble steps of the Folger Shakespeare Library, a beautiful, old, totally not handicapped-friendly building, I was an able-bodied 28-year-old. As the years went on, those stairs became more treacherous, especially when slick with rain. There was nothing to be done about them, though, so I either walked verrrrry slowly or entered through the rear of the building on wet or weak days.
Bathrooms were a different story. I worked in the basement where a men’s room with a single stall was between my office and the two stall women’s room. Having my bladder give up between these two pit stops occurred a few times before I finally wrote something akin to the following to the HR manager.
Hi there! Among the many gifts MS has bestowed upon me is a less than reliable bladder. Having to walk all the way to the ladies’ room is sometimes a hardship, and I wonder if maybe the men’s room could be converted to unisex. Thanks for your help.
Shortly thereafter I got a reply saying that this was indeed a reasonable accommodation and that she would work on an announcement and ordering a new sign. Easy peasy.
A = office * B = men’s room * C = women’s room * P! = you get it
When I moved to government work, I foolishly assumed that the office would be accessible. The government WROTE the Americans with Disabilities Act, after all! How could they not be friendly to the plight of the less mobile?
In so very many ways.
I won’t go into the challenges of entering either of the museum buildings from a wheeled device nor the shitty signage for the ramps and elevators that do exist. Not now, at least. I work in a modern office building with (hurrah!) a button operated door to enter from the sidewalk. The concierges are wonderfully helpful (see this post for proof) and take care of calling the elevator for me. Once on the correct floor, though, the problems began. The office could be entered by two sets of beautiful, ridiculously heavy glass doors. Heavy like, throw your entire body weight into pulling it open and then quickly wedge a shoulder against it so it doesn’t close while you recover from the strain of opening it heavy. Pushing through was easier but still a challenge. The break room doors were identical with the added bonus that one would usually pass through them with hot coffee or a week’s worth of snacks in one’s hands. Even strapping middle-aged (they don’t make ’em young here, y’all) men would see me throwing myself against these doors and say, “They are awfully heavy, aren’t they?”
Then there was the issue of the bathroom. In order to reach the women’s room I had to take 82 steps, pass through one set of the aforementioned glass doors, AND get my clumsy-ass hands to fit a key into a lock, turn that key, and then remove it. Come watch me do that on my best day when I have no pressing needs, and I assure you it will not be pretty. Doing it with a straining bladder (or worse)? Tragic.
So, barely a month into the new job, I talked to someone in HR about my concerns, and within two weeks an email went out about collecting everyone’s bathroom keys. The office was abuzz with excitement about that inconvenience being removed. I gave myself a tiny internal high five for making everyone’s lives better. One issue down, one to go.
A month and a half passed, and in November I was told that the glass doors would be adjusted so they required no more than five pounds of force to open (the ADA standard for interior doors).
Shortly after Christmas, I inquired about the status and was told we were “waiting on a part.”
In early March, the pantry doors were adjusted at last. There were some growing pains — near injuries thanks to people pushing/pulling too hard, which was a little hilarious to be honest — but, again, people were pleased.
In late April, still awaiting action on the entry doors, I reached out to the EEO coordinator to check in, saying,“I’m not the only disabled person on the floor presently – we have someone with a walking stick, someone on crutches, and two folks with slings.”
On May 19, almost eight months to the day from my initial email to the HR manager, the entry doors were adjusted. And there was much rejoicing. On my part, at least.
I realize this hasn’t been the most engaging post, but there is an important message. If you need help, advocate for yourself. If you’re lucky enough to have an EEO office, start there; if not, HR should be a good bet. If you’re among those not yet needy, keep your eye out for how your workplace (or any place) might be unfriendly to gimps like me and speak up if you think adjustments should be made.
Squeak your ass off until necessary change finally happens.
This morning I rose promptly at 7 instead of asking Alexa to perform all of her tricks — news, Jeopardy!, jokes — as I usually do to delay facing the day. I showered last night to speed my morning routine in the name of arriving at my infusion center at 8am, thus minimizing the amount of time I have to make up at the end of the day now that I am out of paid leave. #newjobproblems
I’m back to the infusion center I like. It’s a part of Arthritis and Rheumatism Associates, which ensures I think of Uncle Wiggily every four weeks. I go in, fill out a form about my abilities/sense of well-being (today I’m a six on the zero to ten/best to worst scale), and then settle in for 90 minutes of screen time and the drip, drip, drip of the drug that’s helped my disease steady for the past three and a half years.
Today’s cast of patients was familiar at first — two young women receiving RA meds and an older lady in a wheelchair whose condition I was unsure of. Usually if folks take a pre-infusion dose of Benadryl, it’s a good bet that it’s RA, but some skip it. I’ve run into only two fellow MS-havers in my years of infusions. This morning brought a brand new experience. A mother and child of eight, I’m guessing, came into the infusion room together. I initially assumed that mom had brought the kid due to lack of child care, but then I noticed the sobbing. “I’m sorry. This isn’t our favorite day,” the mom told the nurses.
This girl was terrified, clutching to her face a stuffed sheep with a silky underbelly as she climbed onto the orange-y tan vinyl infusion chair next to mine. Her mom spoke quietly: Look at me. Breathe. It’s okay to be scared. You can hold my hand. There would be quiet for a moment, and then the stuttered inhale followed by a squeaky moan and nose wipe on that poor sheep. Those are the sounds of trying to be brave but knowing you’re failing. In a futile gesture toward privacy, the mom pulled the curtains I’ve never seen anyone use around the chair. A wonderful nurse came over, telling stories of other children she’s worked with, some who even learned to put in their own IVs! One was later prom queen! “I’ll make you a deal: if you stay very, very still, then I’ll be very, very quick.”
I’m an empathetic soul, so my eyes welled up on my side of the curtain. I can’t be that close to palpable fear and sadness without it creeping into me. Poor kid! I thought. I remember being terrified of blood tests! It was so hard to sit still at that age — imagine doing it knowing there’s a needle in your arm! And then my thoughts took a turn . . . Why must I wait, smiling and patient, while the nurse moves the needle in my arm, trying to hit a vein? Why can’t I sob publicly at the injustice of getting chosen in this cosmic game of Duck-Duck-Goose? Why do I have to go to work and pretend that everything is fine even on days when I am scared out of my wits that I will never be able to make a full meal without help again (more on this later), when my energy is completely sapped by heat, when I can’t seem to walk three steps without tripping?
Sometimes I just want someone to wipe away my tears and promise to take me to ice cream later.
I often whine about working in a corporate office building. After years in a beautiful library sharing an office space with two colleagues, sitting in a cubicle farm with an outward-facing monitor is a hardship. Every now and again there’s a bonus to traditional office life. Like today, when the building managers threw an ice cream social. I went downstairs at 2 to collect my share, a scoop of toffee crunch in a sugar cone cup. What a novel presentation! I gripped my cane with my left hand, holding the cone-cup as gingerly as possible as I made my way to the toppings table. One step. Two steps. Crunch! My poor motor skills caused a wobble followed by an overcompensating grasp to steady things, leading to a “Hulk smash!” moment. Half of the cone-cup crumbled to the floor as I cradled the remaining cone bits and ice cream in my hands. A colleague called for a regular bowl, but, alas, they had run out. Another colleague rushed over napkins, on which we placed a fresh cone-bowl, in which I placed my slightly mangled dessert. The ice cream lady apologized repeatedly as if she had somehow caused the near calamity. I slunk back to the toppings table for hot fudge.
None of these toppings were offered, BTW.
I live to eat and drink, but eating and drinking now comes with risk. Cutting meat at a nice dinner often results in silverware clattering down to the plate . . . or, worse, the floor. The hand-hand coordination of bread buttering is daunting. A full glass of any beverage is a hazard to all within a three foot radius. I’ll be damned if I’m going to stop eating steak or start eating my bread unbuttered, though. I suffer these small embarrassments with a polite apology and a smile and let life (and the meal) go on.
