My Life with MS

It’s OK That My New Year’s Blog Is Posted in February: In Which I List Other Things I Learned in 2019

Being both a nostalgia whore and a planner, I adore the change from one year to the next. New Year’s Eve as an event ceased to be fun when close friends moved too far away for quietly drunken nights in together. Now I immerse myself in reflection instead. I scroll through photos on my phone. I sort through the basket filled with cards received and Playbills from shows seen. And I think about what I’ve done and what I hope to do.

a pile of cards and Playbills
A basket of memories, 2018-2019.

In my reflection, I realized I have learned some things that might be useful to folks with chronic illness–and even a few tips for you healthy people.

1. Go easy on yourself.

You may have noticed that I don’t blog regularly (hi, Patrick!). I started this post New Year’s Eve and have thought “Damn it, Rebecca! Just finish it already!” repeatedly over the month. When I can fit in only one Pilates session a week, I think “Damn it, Rebecca! Even for someone with MS, you’re a lazy blob of humanity!” Too tired to finish dinner prep? “Damn it, Rebecca! If you’d planned better, you could have done this without help!” There are kernels of truth in each of these statements of self-abuse, but focusing on them neither helps me exercise nor gets dinner on the table. So I’m leaving self-damning behind and doing my best to accept my limitations without discouraging notes from my internal peanut gallery.

2. Don’t apologize.

Okay, I don’t mean NEVER apologize. I didn’t become a jerk in 2019. Apologies have their place, but that place does not need to be a permanent residency on my lips. If I move awkwardly through a crowded room, I smile and say “excuse me.” If I step on someone’s foot in the process, I apologize. I would never expect someone else with a disability to say “Sorry!” to me, so why on earth should I expect it of myself?

3. Ask for what you need.

I’ve spent a lot of time grumbling about being placed in the back of planes in spite of having declared a disability and requested assistance getting from gate to gate. Should that trigger a “hey, give this lady an aisle seat near the front of the aircraft” notification in the system? Yes! But we aren’t there yet. Airlines have numbers you can call to ensure your needs are met. You may have to call regular customer service first to get that number. Once you have it, save it in your phone and use it.

On a more quotidian note, I exhibit fierce independence usually seen only in toddlers determined to pour orange juice from big jugs into their tiny cups. I want to do everything MYSELF, even at the risk of my safety. After one too many burned hands and sloshed waters, I have humbled myself to bravely ask strangers (without apology!) to carry things to my table for me at restaurants. And they’re happy to do it.

4. Find and embrace things that make life easier.

Perhaps the biggest revelation of 2019 was my discovery of True & Co. bras, many of which have no clasps! Plus, they’re pretty, flattering (no uniboob, a usual risk with this style), and comfortable–even for those suffering from the dreaded MS Hug. Being able to put on a bra on my own is the smallest of victories, but eliminating little frustrations gives me a greater chance of making it through the day happy.

5. Make peace with your body.

Years ago my massage therapist Laura suggested I ask my legs what they need. Although I have yet to get a clear answer from any of my body parts, I have changed the way I talk to them. (Sensing a pattern? A+!) Uncooperative legs used to get an audible “Fuck you legs! Pull it together!” Now it’s much more of a calm “You’ve got this. You are strong, and you can do it if you go slowly.” I often feel ridiculous hearing myself utter this sort of positive self-talk, but I’ve realized that taking an adversarial relationship to my body–and, for that matter, my disease–does not help. I’m not sure that kindness makes me stronger. It does make me feel slightly less shitty, though, and we could all use more of that.

 

New Doctor. Who dis?: In Which Cautious Optimism Does Not Pay Off

My beloved neurologist recently moved to Florida. How did I love him? I shall count the ways. I loved his quietly avuncular nature. I loved that appointments with him lasted a full hour, leaving plenty of room for “oh yes! I’ve been meaning to ask . . . ” queries that never made it to the list I always brought with me. I loved his one-two punch of experience and openness to new treatments. I loved that he took an interest in my life beyond my disease and gave me small glimpses into his. I especially loved that he sent me to the wonderful Dr. B, who calms my head tremors with Botox. And, most importantly, I loved that changed my DMT (disease-modifying therapy) to something that has prevented new brain lesions for six years.

Each time I have changed neurologists the results have been good. The kind and quiet Dr. W passed me on to Dr. C, whose fondness for Shakespeare gave us an entryway to rapport, making it easier to discuss excretory mishaps and other concerns. I left him for the recently departed (from DC) Dr. M in the name of getting more specialized care. His warmth and good humor were welcome bonuses.

So when Dr. M announced he was leaving, I was crestfallen but cautiously optimistic. Perhaps a new neurologist would bring new ideas. Unconventional approaches. Maybe even a prescription for the massages I invest thousands of dollars in each year. This could be great!

I went into my first appointment with Dr. A like I do most nervousness-inspiring situations, with a big smile and a tendency to talk even more than usual. I wanted her to like me, to see I’m not the average patient. I am good natured and funny! I know WebMD isn’t a real doctor! I understand science! (Sort of. My AP Bio exam score 25 years ago may have given me overblown confidence in this realm,)

I was greeted by the blankest face I’ve ever seen. Not a great start, but I could deal with this. I modulated my manic tendencies, directing my good cheer at the three med students to my left who seemed to need it. In our half hour together, the only flicker of emotion that crossed Dr. A’s face was repeated eye rolls when the students’ responses to her questions disappointed her. Corrections were delivered in a condescending tone. My heart broke for them . . . and for me.

We spoke about the need for an MRI and bloodwork. About how decreasing the frequency of my infusions is wise since the complications (which include DEATH, by the way) grow more likely the longer I’m on the drug.

“Should I maybe try another drug now? I hadn’t realized my risk went up with time.”
“It’s an option.”
Silence.

Ooooookay. Now to my list of questions

With a grin to the medical students, “Sorry, you get more than you bargain for with me in the office!” Back to the doctor,
“I’m finding orgasms especially elusive these days.”
“Yeah, unfortunately there’s no female Viagra yet.”
“And if there were insurance wouldn’t cover it! Or let you get some internet doctor to prescribe it!” I laughed.
Silence.
“Talk to  your urologist.”

“I’ve noticed that my voice is froggier than it has been.”
Silence.
“It’s hard to describe . . . it isn’t as strong as it was . . . it’s sort of creaky?”
“Do you mean how it’s kind of sing-song?”
“Well, no. But now I’m self-conscious about how I’m talking.”
Silence.
“That’s not MS.”

I felt embarrassed, dismissed, and foolish. I barely got through the rest of my list.

an obvious graph
Lifted from thisisindexed.com, which is great fun!

 

The physical exam was performed by the med students, deemed worthy of Dr. A’s eyerolls yet entrusted to try their skills on me all by themselves with her interrupting only occasionally to say things like “What do you notice about her gait? What causes that?” They did a fine job, but I couldn’t help but wonder if their assessments would accurately represent my progress. Maybe these benchmarks don’t matter, especially when one is as far along as I am? I was too discouraged to put up a fight.

In typical form, I kept my shit together long enough to exit only to fall apart in my Lyft home. How could I go back to someone that belittles med students in front of patients? And, worse, who addresses my concerns without compassion? I understand that you may not be an orgasm whisperer and that my vocal issues might not be caused by MS, but I definitely need a flicker of a smile when you tell me these things. My inner voice sing-songed my distress, dismay, and despair all the way home.

It’s now a month later, and I have an exit plan. With the best neurology department in the US just an hour away, it seems foolish not to give it a try. Plus, I had the good fortune to meet a charming doctor who works there at an event I attended recently. Here’s hoping we’re as compatible in the office as we were over dinner.

 

 

Portraits in Indignity: In Which I List the 25 Steps to Collect a Urine Specimen

    1. WRITE NAME ON CUP.
    2. Open cup.
    3. Place cup and lid on nearby sink or counter. If unavailable, place on floor near the hand that doesn’t hold catheter.
    4. Unwrap and lubricate catheter.
    5. Hold catheter in teeth like knife-wielding pirate boarding an enemy ship

      IMG_1571
      A blurry, tired catheter pirate.
    6. Clean bits according to clean catch instructions.
    7. Insert catheter just a little.
    8. Attempt to grab cup with non-dominant hand.
    9. Knock cup over.
    10. Praise the heavens that cup is empty.
    11. Grab cup successfully.
    12. Place cup near end of catheter.
    13. Insert catheter fully.
    14. Move cup into stream (again, according to clean catch instructions).
    15. Remove cup quickly but carefully when just over half full and place on floor.
    16. Applaud self mentally for how little pee was spilled.
    17. Finish emptying bladder.
    18. Put lid on cup.
    19. Wipe down hands, cup, toilet seat, floor, etc.
    20. Sigh heavily.
    21. Wash hands thoroughly.
    22. Stand awkwardly in hallway looking for appropriate surface for specimen until nurse says–“Just place it on the counter in there. We’ll find it.”
    23. Think, “You’ll FIND it?!?!”
    24. Place cup on counter.
    25. Exit office, mentally drafting complaint letter. And blog post.

Miss Dependent: In Which I Try to Keep My Shit Together Pre-Travel

packing
Catheters to the left of me, undies to the right.

I awoke in an empty bed this morning.

One of my first thoughts was “Shit! Neal never adjusted my Birkenstock straps.” Neal’s absence brings up all sorts of silly thoughts like this. Something that would take him two minutes will likely take me 15 if I have the patience to hang in there. It’s not that I can’t do things. It just takes time and energy, two things I am short on.

In a few days I leave for a week of work-related fun. Well, sort of fun. See, I helped plan both of the events I’m attending (plus two I’m not), which means I won’t relax for the duration, convinced that room set ups won’t work, buses won’t arrive, and diets won’t be accommodated as requested.

More stressful, though, is my own preparation. My famously frugal father always surprised me when he’d say to anyone fretting over packing, “We can always buy what we forget!” Alas, with chronic illness, the stakes for packing are much higher. Pills must be sorted to ensure that I’m not overly shaky* or spastic. Most of my prescriptions come with extra restrictions, so I shudder to think of the hoops I’d have to jump to get them outside my regular pharmacy.  Also, you also can’t just go to a drug store and say, “Hi! I’d like some catheters, please.” I mean, you can. I bet you wouldn’t get any catheters out of it, though. (Stupid recreational catheterizers, ruining it for the rest of us!) Mine come to me once a month via mail, and the horror of being without has resulted in a Catheters First packing policy.

So, what’s the big deal, right? You sort the drugs. You pack the catheters. You put on your big girl panties and then count out enough for the trip (plus two extras, of course). Then you do the rest like anyone else would. Trouble is my best mobility aid, my wonderful, patient, super helpful spouse, has left (on a trip to Japan, no less) before I do. So there is no one here to gently remind me I’m being insane as I fret about every little thing. No one to run back and forth between rooms to fetch what I need as I pack. No one to tell me to sit down when I’m doing too much. No one to get the shrink wrap off the various products I’ve ordered off Amazon in spurts of maybe-I-need-this panic.

I’m not a spoonie, as I find my energy reserves more nuanced and, mercifully, renewable than that. Still, I know these next few days are going to require care if I’m to have anything left for the joys and frustrations that lie ahead. I also know that the emotional energy I’m burning in worry and stress exacerbates everything. So I’m meditating more. I’m maintaining my newfound commitment to exercise but doing it in small spurts to ensure I can get off the floor afterwards. I am packing a little every day.  I am remembering that I’m really good at event planning and that it’s wonderful that life has given me an opportunity to revisit what was my chosen career before MS got in the way. I am making lists and checking them thrice. And I am breathing.

*Or anxious! One of my anti-tremor medications is used primarily for anxiety, and I sure feel it if I miss a dose.

Scatter My Ashes at Talbots: In Which I Am Again Grateful for the Kindness of Strangers

My dear mother and me (in one of the many blouses mentioned below)

Okay, I don’t really want to spend eternity watching women search for the perfect pair of pants, but there is something magical about the dressing room at the Talbots in my hometown. The individual dressing rooms open into a common space containing a couple of comfy chairs and a thee-way mirror at one end, as dressing rooms often do. What is notable is the air of courtesy and quiet enthusiasm. I’ve exchanged smiles with the daughters of little old ladies with perfectly set hair in search of the perfect pair of “trousers“ and enjoyed hearing groups of middle aged women trading clothes between dressing rooms with a “This didn’t work for me, but it would look darlin’ on you, hon!” (Hell, my sisters and I have done that minus the hon and darlin’!) Shopping on your own? Never fear– there’s always someone nearby who is happy to offer her candid but kind opinion about how your butt looks in those jeans or whether the dress you’re on the fence about is flattering. You can bump into your best friend’s mother, as I have done on one occasion. Or run into someone from church, as my mother does religiously. Everyone is very upbeat, very southern, and very sweet. It really is one of the happiest places I know.

With my mother and I slowing down (lucky me to be slowing down at the speed of an 80-year-old), our long jaunts to the mall have become short visits to the nearby Talbots. We rarely miss it when I’m home, and I usually return with a handful of sale items. After a few lazy days on the couch, we mustered up the energy to go to Talbots this afternoon. I optimistically made my way through the store, filling up my dear mother‘s arms with blouses and a dress and more blouses. A flawlessly dressed woman named Jean* took my clothes to a dressing room and scribbled Rebecca on the door. I continued shopping and then went back to try things on. Trying things on is its own challenge now. A funny quirk of MS (mine, at least) is that raising my arms over my head** is exhausting. This has seriously reduced my stamina for trying on clothing, but I haven’t been shopping in so long that I was determined to make the most of this trip. I tried on a pair of white Capri pants with a pink blouse. Jean and I decided pants were a size too big, so she fetched a smaller size. I returned to my dressing room with the smaller pants and should have stopped. Instead I struggled back into my own jeans (a feat made more difficult by at home eating habits) and  managed to get one last blouse on before giving up. I opened the dressing room door and stood briefly to get the approval of my mother and Jean, who were outside chatting about my MS in hushed tones. Mom’s words of explanation regarding her hot mess of a daughter are usually met with sympathy, but there was a surprise bonus this time… perfectly-accessorized, fully-ambulatory Jean, who had been helping us all along, also had MS! Talbots magic strikes again.

As I rested in the dressing room we exchanged fundraising stories and the lengths of time since diagnosis. I asked if I could wear the last blouse out, hoping that the conserved energy would be enough to propel me out of the store. I managed to stand and teetered my way toward the dressing room exit, where I hovered a moment before looking at my mother and Jean and saying “I’m going down.” I sank to the floor, sitting cross legged a while, feeling embarrassed and defeated but mostly OK. Again it’s a magical place. A woman came through with the brightly patterned dress, and I looked up at her sheepishly. “I’m having a day!” She shrugged and said “We all have those!” while stepping over me. Jean brought a husband chair from the main area so I could hoist myself up using its sturdy arm. With some effort I  got my butt into the chair itself. We continued to talk about our medications and symptoms. (Does it get any more ladylike than quietly discussing UTIs in the Talbots dressing room?!) I was offered a Sprite and accepted a water. As things looked less and less hopeful, Jean explained that another one of the employees there was her “support“ and could be brought in to help. Jean got me to another husband chair several feet away for one last rest before the support arrived (in an adorable yellow eyelet top). 

 

I exited the store flanked by my Talbots angels and poured my tired body into my mother’s car. Everyone was so very gracious and sweet. I waved goodbye and smiled through the window. The moment mom pulled away I burst into tears. Sometimes the kindness of strangers is overwhelming. Yes, there was a lot of embarrassment mixed in there too, but it’s really the kindness that destroys me in the nicest way. I recently joined MS Twitter, and I’m positively appalled at what I read there. The insensitivity others face from friends and strangers alike floors me. I feel so fortunate that that has not been my experience. I am no Pollyanna, but I do have full faith that when shit goes down in public I will not face it alone. It may be humiliating, but dignity is overrated. Actually, dignity isn’t overrated. You can be dignified sitting on a dressing room floor, as long as you keep a reasonably brave face, graciously accept the help offered, and keep your legs together if you’re wearing a skirt.



*Name changed in case Jean isn’t as interested in having her business all over there internet as I am.

**As observed before, waving them like I just don’t care is NOT advised.

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.

Skip tontent

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 the 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.

 

All the Single Ladies (and men!)