Stumblr: Life with MS

When first diagnosed with MS, I comforted myself with thoughts like "At least it isn't cancer!" So I tucked my hypochondria away into a memory box, certain I wouldn't need it now that I'd been assigned my disease. Then the MS Society's mediocrely written but informative magazine, Momentum , showed up on my doorstep with headlines like "MS and . . . Managing Two Chronic Illnesses." Say what?! What kind of a bullshit world do we live in? One that can dole out multiple heavy physical burdens at once, it seems. I'm pleased to report that presently I'm holding steady with a single illness, but I have just wrapped up ten weeks of queries, biopsies, and procedures confirming that. I saw my GP at end of March. She noticed, as she* did six years ago, a lump on my thyroid. This prompted an ultrasound, which showed the lump had grown one centimeter. Thus it was time for a needle biopsy (AKA fine needle aspiration or FNA). What fun! I had done this dan...

If my alarm goes off before 7am, there must be a damn good reason for it, preferably one that has something to do with traveling somewhere fun to eat wonderful things. In the case of last Tuesday, I rose at 6:08 to travel five miles across town for a brain MRI. Hardly fun or wonderful but a necessary twice-a-year ritual thanks to my current disease modifier, Tysabri . Tuesday's was my thirteenth MRI since 2010! (Hat tip to Google Calendar for that statistic.) I bet if you added up all of my MRIs since 2004, you'd find that I had logged a full day in the tube. It isn't quite enough to fulfill Malcolm Gladwell's 10,000 hour rule, but I daresay I'm pretty good at it. MRIs begin with extensive questionnaires about the metal in your body. It is wise to take these questions seriously, because the M stands for Magnet(ic) -- and you do *not* want to forget to mention (and remove!) a nipple ring before encountering a super strong magnet. (I was once in the waiting room w...

I fall down. A lot. As you can read here , there are many reasons why people with MS have trouble walking. Me, I experience foot drop on my left side, which causes me to trip over my own feet. My balance isn't great, nor is my energy. All of that plus a habit of moving too fast and pushing too hard means plenty of falling. Usually it’s a simple toe-caught-on-the-uneven sidewalk sort of thing. Or maybe a changed-directions-too-quickly-at-home collapse. Or a it’s-3am-and-I-forgot-our-bedroom-has a-step-in-it spill. (Yes, our bedroom has a step in it. I know, I know.) Whenever/wherever/however I fall, my first thought is always the quickest of body scans before my mind races to witnesses and how to appease them. I spend significantly more time worrying about ensuring that those around me are okay with what has happened and minimizing their embarrassment than I do about my own welfare. Maybe it’s a lady thing. Maybe it’s a Rebecca thing. It’s just what I do. Tuesday morning I wal...

Special thanks to archivist David Wise for providing me with the primary source material at the end of this post.  The months between my initial appointment with Dr. Van Damme and my diagnosis on April 23, 2004 are largely a blur. I believe I left his cramped, speculum-filled office with a referral to the cleverly-named Neurology Center, conveniently located on the 2100 block of K Street, where I worked. I was assigned to Dr. Wei, an unassuming gentleman who introduced me to the battery of neurological exams I have participated in biannually since then like some sort of frequent, unathletic Olympics. Touch your nose – touch this pen. Does this feel sharp? Stand on one foot (they don’t ask me to do that anymore). Push up with your elbows; don’t let me push down. What number do you see? He also performed a very simple test – running a blunt, pointed instrument along the bottom of my foot – that I later learned was a sign that something was wrong with my central ne...