My Life In Stitches: In Which I Chronicle Trips to the ER

1981: I am four and “helping” my dad in the back yard. “Helping” means playing Tarzan with the stakes and ties holding up his tomato plants. Shortly after he says “Stop that, Rebecca!” for the fifth time, I take one more leap/swing and fall, hitting the back of my head on a log. My only memory of the aftermath is my mother and sisters coming home to find me standing on a kitchen chair while Dad tried to comb my hair and assess the damage. Stitch count: four.

1982: I am five and a budding gymnast. I use the couch arm and the adjacent director’s chair to play parallel bars, supporting myself on my hands and letting my legs swing free. I have been told not to do this. Many times. But I continue and am surprised to be impaled on a sewing needle my mother has left stuck in the arm of the couch. Doctors try and fail to remove the needle, so an orthopedic surgeon is called to finish the job. The wound is closed, and my wrist and arm are wrapped and splinted. I am treated to McDonald’s at the end of the ordeal. Stitch count: two.

1991. I am fourteen, and it is early in freshman year. I take out the trash, yelping when I get near the door to the carport. A piece of glass punctures the trash bag and my right wrist. I watch this one get stitched and think it’s pretty cool. I get the side eye at school and realize what a bandaged wrist implies. Tasteless jokes about suicide ensue. My mother still apologizes when this incident comes up, and to this day I shout “There is glass in the trash!” repeatedly when there is glass in the trash. Stitch count: four.

2007. I am thirty. It is the morning of Thanksgiving. Friends are coming over, and I am working my way through the prep spreadsheet I’ve meticulously created. Cutting an onion with a freshly sharpened knife I slice through my left index finger. We apply pressure. We elevate. The bleeding continues. I insist I will be fine. There are tears. Neal offers to drive me to the ER, but I refuse. Thanksgiving must go on! I accept a ride to the Metro station and take the subway to GW, elevating my finger the whole way. A handsome physician’s assistant stitches me up and I am back home in under two hours. A Thanksgiving miracle! Neal and Char do a fine job cooking without me. Stitch count: four.

2009. I am thirty-two and en route to visit my college roommate. I leave work at the Folger early and might be rushing more than I should along the uneven sidewalks between work and the train station. I catch my toe on a brick and land on my face. I am not entirely sure what I’ve injured, but I know I’m very bloody. A passing construction worker hands me a fairly clean towel, which I press to my nose. Other passerby stop. I sit on the sidewalk until an ambulance arrives and four clean cut, well-dressed doctors emerge, circle me, and lift me inside. Perhaps due to their attractiveness, I perk up a little and stop crying long enough to explain where I was headed, that I have MS, etc. I ask if they always dress so well when picking women up off the street, flirting just a little. They explain that they’re physicians at the Hart Senate Building(!), just down the road. I am driven the half block then wheeled through security and into their office, blissfully unaware of what a horrorshow my face is. I sit in a comfy chair. The doctors clean me up a little then ask if I’d like to see myself. “Sure!” I say. A mirror is brought and I see a bruised nose, a gashed forehead, and a severely split lip. I realize this is the face that was flirting moments ago. Idiot! I keep it together until I reach Neal at his office and sob as I try to tell him what happened. One of the doctors takes the phone and explains. Neal retrieves me and takes me to GW’s ER where, after six hours, I get stitches in my forehead and lip. The lip flushing and Novacaine is excruciating. Recovery is slow and gross, but I am eternally grateful to PA Amy for her beautiful work. When I feel up to it I deliver a thank you note and cookies to Dr. Harder and the other Senate doctors. Dr. Harder calls to follow up. We do not start a torrid affair. Stitch count: twenty.

2014. I am thirty-seven. I trip in the basement hallway of the Folger and bang my forehead on a door frame. First aid is kindly administered by a member of the fabulous security staff, which is always so good to me. Stitches seem inevitable. An ambulance is called in spite of my asking to simply taxi or Uber. I feel ridiculous being carried out on a stretcher for a mere brow abrasion, but I smile through it. Inside the ambulance I wonder why the Doppler effect never kicks in. God, that siren is so loud and relentless! Oh right. I send Neal an email entitled “Oops I did it again” en route, and he meets me at the ER in spite of my telling him not to. The ambulance arrival gets me through triage more quickly than usual. I leave with stitches along my left eyebrow and a shiner. Stitch count: five.

2020. “I am forty-two, no forty-three,” I tell the physician who runs to my side. I have just finished six hours in the Cancer Institute of Washington Hospital Center getting my first infusion of Ocrevus, my new MS drug. I am groggy from the meds and from sitting so long but have assured the nurse who wheeled me to the lobby that I wil be fine to make it to the Uber. Three steps away from the car I fall to my left, scraping the side of my face on a cement planter and landing chin-first on the sidewalk. My Uber driver and a hospital guard scoop me up, deaf to my cries of “Please let me sit a minute!” (Obviously they haven’t read my blog about falling.) I teeter between them while being peppered with questions by the guard, an indignant aid (“I keep telling them not to abandon people post treatment when they’re too weak to walk!”), and the aforementioned physician, who examines my chin, declares stitches necessary, and fetches gauze to stuff into my bloody face mask. I am put in a wheelchair and pushed to the ER to check in and then wait. And wait. And wait. Foolishly I text Neal, who drives to the hospital, neither of us remembering that Covid restrictions mean he cannot sit with me. He runs in with Coke and water and says he’ll be right outside. We text sparingly as my phone slowly dies. I read much of To All the Boys I’ve Loved Before as well as a good chunk of a David Rakoff collection. After three hours I am brought to a private room where my vitals are taken for the thirtieth time (thanks to the earlier infusion). I am examined. I am told I need a CT scan to ensure my jaw isn’t fractured, which will delay things further. Boo! But I am offered drugs. Hurrah! The drugs arrive an hour later, and I rejoice in Tylenol-3 and water (my bottle long ago emptied). The doctor returns, saying he might as well stitch me up while I await the scan, and the moment I lie back, a nurse arrives to take me down the hall. I wait. I am scanned. I am stitched at last. I am given a gauze goatee. I call Neal from the lobby and collapse into our car, twelve hours after he dropped me off. Stitch count: five.

Forty-four stitches in nearly forty-four years of life. And what have I learned?
1. Listen to my parents. If they say not to do something, there’s likely a good reason.
2. Walk slowly. (Neal scoffed at the idea that I have learned this. I’m trying!)
3. Ask for help.
4. A Kindle full of good books can make anything bearable.
5. Facial wounds do not enhance one’s flirting game.

I Can’t Stand the Heat: In Which I Get Out of the Kitchen

“Throughout September, join us in celebrating Can Do Month by sharing a photo of how YOU thrive with MS!”

This line greeted me in my daily junk email aggregator, and rather than gagging (my usual response to being encouraged to focus on all the things I can do with MS), I felt sad. For these days I am not thriving. These days I have just enough energy for a jaunt to physical therapy, a few hours’ work, and two episodes of Buffy. These days it is not uncommon for Neal to make all three of our meals for us as I’m relegated to a bar stool to read or play with my phone. If he’s preparing dinner, one eye is on my task while the other looks up compulsively to see what’s happening on the other side of the counter.

While these nights spare me the expenditure of physical energy, my mental energy triples as I worry about a) whether he’s doing it right and b) when to speak up. Cutting onions or other vegetables unsafely (i.e., not with their flat side down)? Let it go. Trying to boil water on medium heat (which, to be fair, is pretty damn hot on our range but will slow the process)? I’ll likely just make an excuse to pass by the stove and bump it up a little. Subbing whole wheat flour in cookies when we’ve run out of AP? Oh hells no. Initially I calmly (mostly calmly) read recipes aloud, micromanaging each step, but, as I try to let go more, I try to let him do his own thing, checking in only occasionally.

While I was on a call last week, Neal made a great semi-improvised quiche. Mushrooms, asparagus, spinach, THREE kinds of cheese. Really delicious. And I was happy as I ate it . . . and yet so very sad.

From the moment our cohabitation began, I was the primary household cook, ensuring we ate really good dinners nightly with a least one proper breakfast on the weekend. Sure, Neal would jump in from time to time to make burgers or do some of the chopping, but the kitchen was my domain. I received marriage proposals while passing plates of homemade mozzarella sticks and olives in blankets at our ridiculously crowded house parties. I had a goddamn cooking show! Even as the MS slowed me down, I almost always made dinner. Sure I did it from a rolling stool and begrudgingly accepted help with heavy pans and fiddly preparations, but I still did most of the work.

Lately due to some combination of MS, mega antibiotics, and Covid malaise I have trouble mustering up the energy to make a cup of tea. Our I cook/you clean arrangement has become you cook and clean while I sit still cycling through gratitude, frustration, anger, and dismay. When dinner isn’t quite up to my standards, I regret that I couldn’t do it myself. When it’s great, I feel threatened. I’m ashamed to admit it, but it’s true.

I recently told Neal I’m pretty sure that one third of the sentences I say to him start with the words “Would you please.” Each year, each month adds to the snowball of needs that is me, and, if I lose my status as kitchen goddess, what am I contributing to our household barring the occasional (okay, frequent) pun and a pretty face? I know marriage is about ups and downs, sickness and health, etc. But I’m the dummy who put promises to feed the family in her vows. TWICE.

MS (/Covid/antibiotics/2020) is shaking another part of my identity, so I’m practicing my own kitchen serenity prayer–pitching in when I can, having the grace to step away when I can’t, and listening to Neal when I lack the wisdom to know the difference. I made us an excellent breakfast of toast, avocado, scrambled eggs, and smoked salmon this morning. I’ll let him handle dinner tonight.

Steak & Arugula a la Neal.
I couldn’t have done it better myself.

Rebecca’s Health Report Vol 21, World MS Day Edition: In Which I Restart a Tradition in a Public Forum

Hi family,

In honor of World MS Day I’ve decided to send this report to a broader audience. I realize it’s been a while since I wrote one of these, and I’m sorry. There have been tiny victories and defeats over the last few years, but for the most part my health remains low grade shitty, hardly worthy of an email. Or blog.

My weeks before being stuck at home had a different rhythm, and self care was easier. On good mornings now, I stretch, get out of bed, and then head to the living room for 15 – 20 minutes of Pilates on my own before a sensible breakfast. It is equally (read: MORE) likely that I will spend 30 minutes scrolling on my phone before rolling out of bed, ignoring the yoga mat, plopping my tight glutes on a barstool, and ploughing through two blueberry scones. It takes such effort to be good, to take care of myself.  And, no matter how much I remind myself of the wonders a small bout of morning exercise does for my body and psyche, it is hard as hell to make it happen. My wonderful Pilates instructor Jeneva spends a half hour Facetiming with me on the weekend, so, if nothing else, I have that.

Me, on a “good” morning, trapped in my Pilates ring

I feel like I’m falling more these days. Maybe due to reduced core strength. Maybe because I’m not paying enough attention. My elbows are covered in little pink circles where I’ve caught myself on a wall. The lightest of skinnings. Post-fall my first thought used to be a quick calculation of when my next massage would be. Under current circumstances those calculations are pointless. I try to be happy for those who can finally get their hair cut  and colored again*, but I won’t be celebrating until massage studios are open. Massage never fixes things completely; it sure makes them feel better sooner, though.

I should also acknowledge that increased falls with Neal home are a mixed bag. On one hand, he’s always here to help me up. On the other hand, HE’S ALWAYS HERE. Sometimes a girl just wants to flop around awkwardly in private.

I was due for bladder Botox in April, but rules regarding what procedures are essential make it so that all my urologist can provide is an email saying “I am not quite sure when we are opening up to do Botox, but I have a list of people to call and will add you so we can get you scheduled ASAP.” So I try to curb my liquid intake and celebrate each trip to the bathroom as a chance to get in more steps.

Oh speaking of steps–thanks again for your Walk MS donations! I haven’t managed a full mile  since then, but  I try to do a half mile most days. It was pretty damn inspiring to realize I could do it. So hurrah for that.

What else? Oh, I  had a telehealth visit with my neurologist, Dr. A, whose phone manner is much better than her bedside one. (I still haven’t sorted out the paperwork with Johns  Hopkins, which is annoying but not worth my energy presently.) The chronic back pain that she shrugged off last fall is now worthy of her concern, so I take 100mg of Gabapentin 3 times a  day. And it  helps some! Fish oil and Biotin are back in the supplement pool at higher doses than before. (Sure, why not?) She also sent me for a brain and cervical spine MRI. No results yet, but I’ll keep you posted. My biannual bloodwork (required to keep me on Tysabri) will be completed next week when I go to Georgetown for neck Botox. Yes, neck Botox is fine but bladder isn’t. Ours not to reason why.

At work we have a Slack channel (Slack is like Facebook for work) called #covidsilverlinings, and here are mine:

  • No massages means no paying for massages, nor paying to be transported to and fro. And while I will strip down and get on that table THE MOMENT it’s possible, it’s good to know that my body does not shut down without that care.
  • Pilates at home is effective! And, again, doesn’t require transport. I prefer the apparatuses (apparati?), but perhaps I can do a combo of home and studio work moving forward.
  • Being home all the time has taught me that I’m a decent walker when I take smaller steps and use my rollator. Bonus: the rollator is handy for transporting snacks from room to room.

That’s all the news from DC. All my news, at least. Thanks for your support. I am so lucky to have you all!

Love,
Becca

P.S. Mail has been inconsistent of late, so I assume my MS Day presents are stuck at a post office somewhere on the east coast. Looking forward to their arrival!

*Believe me, I get it!

Welcome to My World, In Which I Compare MS and Social Distancing

When social distancing first kicked in I was on a call with my usually globetrottting but newly homebound colleagues who were bemoaning the fact that they were sitting all day. A particularly sensitive one of these lovely humans wrote soon after to check in, worried about how those comments might land on someone that has no choice but to sit most of the day. I gave it some thought and realized that, while I did briefly want to sing “Cry Me a River,” I was primarily interested in the fact that the whole world was getting a taste of what it’s like to have MS.

You cancel plans you were looking forward to because you can’t leave the house.

Sure, there aren’t government decrees insisting that people with MS stay indoors, but, believe me, my body is harsher than any mayor. I don’t leave the house because I can’t. Literally. Due to fatigue. Due to my legs being little bitches. Due to it being 80+ degrees. Due to depression. You get the picture.

You spend hours wondering is this cough due to COVID . . . or is it just a cough?

MS symptoms are a Pupu Plattter of weirdness. Spasticity, gait issues, bladder/bowel problems, and sexual dysfunction are all clearly MS-related for me. Fatigue? MS likely plays a big role but so does not exercising enough and eating poorly. And my short term memory issues that scare the hell out of me? That could be MS or just the fact that I don’t focus well or pay enough attention.

You don’t know how long this will last.

MS, like a diamond, is forever, but its individual symptoms’ lengths vary. I had double vision ten years ago that seriously affected my day-to-day to life and had to stumble through without an end–or two–in sight. It was mercifully finite. Lower back tension and pain that settled in two and a half years ago have been my constant companions ever since. Now that I’ve reached the progressive stage of illness, I have to make peace with the fact that things aren’t going to improve much. Good news: you don’t have this problem.

You feel isolated from friends and family.

I am #blessed that this is not an issue for me. All of my friends and family have been crazy supportive since my first pre-diagnosis tingle. If MS Twitter* is to be believed, this is not the norm.

a glass of bourbon
a tasty coping mechanism

You find new ways of doing things.

You’re moving your weekly coffee date online, adding ad hoc teacher duties to your routine, and cutting yourself and your family some slack. I’m sitting down (or, UGH, asking for help) to cook dinner, working Pilates into my schedule, and cutting myself some slack. Your new ways of doing things are constantly evolving as your circumstances change and you figure out what works. Mine, too.

 

You are on a roller coaster of emotions.

Some days what works is lying on the floor crying, And that’s okay, so long as you get up eventually. Some days you are a goddamned rock star with one hand ready to unmute yourself for a meaningful contribution to a Zoom meeting while the other is cutting Shrinky Dinks.** Some days are hopeful. Some days are not. But you (and I) press on because there is far more good in the world than shit, even in these particularly shitty times.

 

*A thing! Really
**I saw this happen last week.

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.

 

 

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.

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.

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.