Tag: Multiple Sclerosis

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.

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

Oh, how times have changed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Look I made a hat!

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.