Stumblr: Life with MS

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 well...

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. ...

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 w...

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 cost...

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...

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!...

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 ...