Stumblr: Life with MS

A little over a year ago I decided my annual 12 weeks of physical therapy wasn't cutting it. It was time to consider a personal trainer. The idea terrified me. I pictured hyper, fit ponytailed women cheerfully shouting at me for one more set. I pictured beefy men without a brain in their heads . . . actually, that wasn't so bad. What I got was entirely different and has ruined me for all others. LaTasha Barnes is petite but strong AF. Her background includes cheerleading, the army, and competitive Lindy Hop . She has a fierce wit and a delightful knowledge of 90s pop culture. The woman contains multitudes. Even at my fittest, I never enjoyed exercise. I still don't, really. But Tasha changed my mindset with her good-natured encouragement that never condescended. (The workouts tailored for a body suffering from neurological mayhem didn't hurt either.) She encouraged me to rest when I needed to and to push a little harder when she thought I could. She helped make me str

Two months ago, a knot developed in my right lower back, just above my glutes. There it has stayed in spite of massages, heating pads, and stretching. Bending over both hurts and is a bit dangerous, so I've stopped doing it. Dropped things remain dropped until Neal retrieves them. Portrait of the artist after getting her own breakfast plate. I am a mess. There is shit all over my house. Each room has two to four items on the floor -- discarded clothes, a rogue noodle, an eyebrow comb, a tampon that leapt from its cabinet like a story from the "It happened to me!" section of YM magazine, etc. As I type, I wear a bra attached by a single hook (which took four attempts). I pulled my hoodie on backwards initially, leaving me briefly blind and disoriented. My legs ache. It's a soft ache, humming along my IT bands and pulsing quietly in my calves and ass. I'm no stranger to MS-related discomfort, but I'm not used to hurting. Walking is awkwarder tha

I have many things to tell you, dear reader, but we'll start with an anecdote from today and see if I can still do this writing thing. Fall is finally here, and I am delighted. Temperatures in the 60s mean a more mobile, energetic Rebecca. I had lunch with a friend today, and, emboldened by the cool air, I walked 2/3 of a block to CVS afterward to retrieve five prescriptions. (Five! That's not the point of this story, but jeezy creezy that's a lot of drugs.) I don't know if it was because I'd been sitting a long time beforehand or what, but my gait was the same step-draaaaaag-step-draaaaag that made me think "I feel you, man" when watching the Mummy move across the screen during Monster Squad . See ya later, Band-Aid Breath! I briefly considered buying a "President Evil: Four Years of Hell" t-shirt from the street vendor thirty feet from my destination in hopes of briefly sitting  in his folding chair, but I soldiered on, mummying my way

As I discussed in my World MS Day Video , I'm a big fan of throwing things at the wall until something sticks when it comes to improving my physical condition. If a treatment is safe, reasonably priced, and promises not to be too painful, chances are I'll give it a try. I love it when friends send me articles about new MS-related drugs or procedures. I cannot be bothered to keep up with every MS-related development. I have recipes to make and tv shows to watch, dammit! Information is good, and it's nice to be thought of. A friend got me to try acupuncture, which wasn't my jam but was definitely worth pursuing. A friend, who also has an auto-immune disease, recommended cryotherapy  after trying it herself. It sounds a little bonkers, but I may give it a shot (especially since I have a coupon).  Advice from friends is easy to take because I know it comes from a loving place. And because my friends are not preachy know-it-alls. Yesterday at work, I told a colleague tha

I have not gone gentle into disability. Each assistive concession, from buying my first cane to installing grab bars in the shower, was agreed to only after heated discussion, gnashing of teeth, and tears. Neal has cajoled me into the acceptance of things that make my life better at home, and we’ll talk more about them later. Today I’ll tell you about my journey from silent sufferer to squeaky wheel at work. When I first walked up the white marble steps of the Folger Shakespeare Library, a beautiful, old, totally not handicapped-friendly building, I was an able-bodied 28-year-old. As the years went on, those stairs became more treacherous, especially when slick with rain. There was nothing to be done about them, though, so I either walked verrrrry slowly or entered through the rear of the building on wet or weak days. Bathrooms were a different story. I worked in the basement where a men’s room with a single stall was between my office and the two stall women’s ro

This morning I rose promptly at 7 instead of asking Alexa to perform all of her tricks -- news, Jeopardy!, jokes -- as I usually do to delay facing the day. I showered last night to speed my morning routine in the name of arriving at my infusion center at 8am, thus minimizing the amount of time I have to make up at the end of the day now that I am out of paid leave. #newjobproblems I'm back to the infusion center I like. It's a part of Arthritis and Rheumatism Associates, which ensures I think of Uncle Wiggily every four weeks. I go in, fill out a form about my abilities/sense of well-being (today I'm a six on the zero to ten/best to worst scale), and then settle in for 90 minutes of screen time and the drip, drip, drip of the drug that's helped my disease steady for the past three and a half years. "Uncle Wiggily wants to be cured of his rheumatism.  On the way to Dr. Possum’s office, he has many adventures.” – The Uncle Wiggily Game , © 1967 Parker Broth

I often whine about working in a corporate office building. After years in a beautiful library sharing an office space with two colleagues, sitting in a cubicle farm with an outward-facing monitor is a hardship. Every now and again there’s a bonus to traditional office life. Like today, when the building managers threw an ice cream social. I went downstairs at 2 to collect my share, a scoop of toffee crunch in a sugar cone cup. What a novel presentation! I gripped my cane with my left hand, holding the cone-cup as gingerly as possible as I made my way to the toppings table. One step. Two steps. Crunch! My poor motor skills caused a wobble followed by an overcompensating grasp to steady things, leading to a “Hulk smash!” moment. Half of the cone-cup crumbled to the floor as I cradled the remaining cone bits and ice cream in my hands. A colleague called for a regular bowl, but, alas, they had run out. Another colleague rushed over napkins, on which we placed a fresh cone-bowl, in wh