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Amazing Adventure

I'm back from my road trip to the DC area to play guinea pig at the NIH. Long story short, I was diagnosed with relapsing-remitting multiple sclerosis in November of 1994, the same month the first drug to treat the disease was approved for use by the FDA. A very important person in my life suggested I talk to NIH, who had a whole department studying the disease, and upon discovering that I was local, willing, and had an identical twin, they signed me right up! I visited them monthly for five years while they followed my progress on the drug, and I'm happy to report that slides of my brain are used to show why proactive treatment is so important. I either have a very mild case, have responded brilliantly to the drug, or more likely a combination of both. I love these people, and it's an honor and a privilege to take part in their work, not to mention avail myself of their wonderful care. Next time you feel grumbly about your taxes, know that at least a little bit of them go to this wonderful institution.

So, they've come up with a new study on the cognitive effects of MS, and thought of me. I spent the day Thursday doing really horrible memory tests like remembering as many of the 17 random words the tester read to me - yeah - right. I forget a caller's name on the phone as soon as they say where they're from - and I'm a seasoned secretary. The tester and I managed to giggle through it, even when, several tests later, she asked me about those damned words again! I had a regular neuro exam (which invloves things like touching my finger to my nose and then the doctor's finger and walking on my heels), they got a line in with one stick (brilliance), and I had the usual somewhere around 60-minute MRI. Since I've had more than 100 of these obnoxious scans, I fall asleep to the jackhammer sounds and usually wake up once the scan stops and it gets quiet - a bit uncomfy, but no problem.

Of course, after all that, I deserved a yarn shop, so I set out for the wilds of Rockville and managed to find WoolWinders: A Knitting Salon. I enjoyed visiting with many yarns not found in my market, and had a lovely conversation with the very generous and spirited owner, Jacquie. Ten balls of Garnstudio's Bomull-Lin in navy and cream walked out with me - maybe I can manage some sort of shell with a bit of stranded colorwork at the bottom.... I also managed to visit an Anthropologie store for the first time ever. Did you know every piece of clothing costs $88 or $139? I did manage to find a very silly "cupcake" skirt on sale that I had to have.

It was a great day - my energy was on, I had my knitting in the waiting room at NIH and for the first time in 13 years saw other knitters there too! We had a jolly time talking about my Jaywalkers, a cool capelet in the works, and a gazillion fun scarves for charity. One of the knitters was a volunteer driver for a woman getting treatment, one was a patient's wife, one who admired my sock was in the process of an MS diagnosis - we got to share some stories too. I know that one of the things I'm here in this world to do is to talk to people about MS, and to help any of them I can get hooked up with NIH.

The gang of wild and smart and funny nurses were in full swing and amidst all the organized chaos, I had a great day - I was open and happy and generous, and everyone was the same right back to me. So cool. Felt like I was doing exactly the right thing.

Friday, something happened to my connection to the universe. I started with a spinal MRI - a first. I didn't ask how long it was, and hopped in at 7:30am. I must have fallen asleep for a good chunk of it, but by the time I woke up, the back of my head was killing me from laying still, my legs, with a bumper under my knees, were falling asleep, and I was getting quite twitchy. When they finally pulled me out, it had been an hour and 40 minutes - too long. Everyone acknowledged it was too long, but the two very cute scientists, one Greek, one Italian, had to re-run a few of the scans since I "moved" - also known as breathing, which unfortunately makes for dodgy scans. Ugh. But I'm a trooper - and I had to be, because I was to hop right into another MRI - the big magnet - for my third scan in less than 24 hours. All of the nurses were fabulous, and they worked hard to make me as comfy as possible, but really, it was doomed from the start. There was no way I was falling asleep again, and somewhere around an hour into this scan, I noticed in the mirror that the two cute scientists were in the room gesturing and waving slides around and ogling the display. And also that my legs were again falling asleep, and now the spot between my shoulder blades was screaming. For the first time in 13 years, I hit the panic button at 70 minutes - couldn't take another minute. They rushed me right out after telling me I was just past halfway - couldn't do it - but I felt defeated. Ugh again.

After sitting outside in the crystal clear, bright blue sunshiny day (finally!) and some lunch, I proceeded to my evoked potentials test, which was MUCH more pleasant than the MRIs and involved a lot of electrodes on my head, arms, and back, some fun current to make my thumbs twitch, and a checkerboard screen to stare at. Along with a most pleasant technician who was practicing saying "fiance" instead of "girlfriend" who was also a potter, musician, and all around adorable kid. I managed to stay so calm that there were no "bad reads" during the scan - I used my best yoga breathing and good attitude vibes and it worked.

So I was at least released from guinea pig duty with a success. Phew. It was 3:30pm in Bethesda on a Friday afternoon - I didn't think much about driving all the way across town to finally get to see the flagship Stitch DC store on the Hill. Bad idea. Followed by a mounting series of bad ideas. First thing? I, in my usual fashion, knew the shop was on the Hill, and assumed I would just run into it if I headed in that general direction. I lived in DC for 16 years, but have been gone for seven, and I decided to trust my memory of getting around - second thing. Anyway, it was bumper-to-bumper, gridlocked, nightmare traffic from the start - so much that there was no way in hell I'd be able to pull over to find a place to park to go to Sur la Table - I waved at Julia's picture as I drove by. I was trapped like a rat from Bethesda to the Capitol - took me a couple hours. Still in time to make the shop - but then, where was it? A nice lady on the phone attempted to help, and I made a U-bie thinking I was finally headed in the right direction, but she ended her directions with two little letters that let me know I was doomed - S.E. I was in N.E. with absolutely no idea which direction I was facing anymore, so when I realized I was headed into a not-so-nice area I bailed on the yarn shop and attempted to make my way out of town, across the river, to Alexandria for the night.

At 7:30pm, after stopping at a Barnes & Noble just to take a break from the madness, I was STILL in bumper-to-bumper traffic. How do they do it? No wonder our world is nuts - brain cells are being sacrificed willy-nilly in rush hour commutes. I'm sure I can't describe the despair of having no way out - I'd never go back.

The last stop on the adventure was Arlington Cemetery to visit my dad. Armed with my quad venti latte, I started the five minute drive and Neil Young's Old Man came on the radio. Stunning. Breathtaking. Another clear blue sunshiny day and singing at the top of my lungs, "old man take a look at my life, I'm a lot like you were." Fantastic. I was there at opening along with the Tourmobiles, and had to get a pass to drive into his marker. To punch his name in and see him pop up - I guess I thought they'd say "nope, not here, must've been a dream." It's truly remarkable that my dad is in such a place, and I love that I can see him there. We had a chat, I offered him some coffee, and it was good. And hard, but good.

When I called my mom after leaving, she said the family had been talking about singing Old Man at the beach tonight at the 2nd Annual Kites for Captain in Florida - thanks pop!

I knit almost three inches on the Jawalker on this trip - but came home to find it's MUCH smaller than its mate - my gauge changed dramatically. I think I'll only do two socks at the same time anymore for just this reason. And the swatch monster? I can't talk about it. Whenever it hears me say anything, it rebels. I'm still fighting with working on it. Sorry for the severe lack of pictures - I'm working on it!

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This page contains a single entry from the blog posted on April 25, 2007 12:13 PM.

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