Thursday, August 26, 2010

20 days til the second round of roto-rootering (and various reports of miscellany)

I have a date for a second venogram. So what do I do in the meantime? Find other ways to occupy my time in a weak attempt to not obsess. Really weak. Mostly unsuccessful. 100% half-assed.

Not to say that I'm being unproductive. Work is good. Recording is good. Social life is good. Husband is awesome (as per usual). Sleep is...sketchy. Not because I'm not tired - my body's tired but my brain won't rest. It's not just here and there. It's every. single. night. Unless I pop a muscle relaxer to quiet the annoying, uncontrollable, involuntary leg twitch. If I do that, I'm sleepy within an hour. But falling asleep isn't the problem - it's staying asleep. And if I get up for a moonlit trip to the toilette then I can't fall back to sleep for at least half an hour.

There are good things - it's good to be busy. But once it starts to wear you down? No bueno. I always feel like I'm waiting for the next event: studio, birthday parties, bridal/baby showers, going to see a band play... it seems never ending. And then there's physical therapy. Kicking my ass twice a week. It's exhausting...

BUT apparently worth it. As any plucky MSer knows, physical therapy is all about measurable improvement.  You're evaluated at the beginning and intermittently throughout your visits to see how you're doing.  At my first visit post-venogram/angioplasty, my therapist used the Berg Balance Scale to assess my risk of falling (it's used a lot for stroke patients and MSers).  The therapist will add up the points that equal your level of function and score your fall risk.  The max number of points you can get is 56, but the goal is 47/56 (I doubt that anyone, save Superman, is a zero fall risk).  So anyway at my first visit, I was a 28/56.  Meh.  After ten visits?  36/56.  Booyah.  Not too shabby.  My therapist said it was "quite good".  I'll take "quite good".  I'm proud to say I'm a moderate fall risk.  Yippee.

I asked an assistant to film me walking while my therapist spotted me.  I was also sporting a very fashionable and attractive gait belt that was strapped around my waist - not at the smallest part right below my rib cage, as Stacy London of What Not to Wear fame suggests- more like right at my belly button.  Made me look stocky.  Hearty. Slightly butch... But I was walking; it wasn't totally natural, kind of stilted and awkward and I need his support; but it looked pretty good.

Why didn't I post it on youtube, you ask?  Well, I didn't want everyone to see the gigantic wedgie my therapist gave me.  He grabbed on to the belt attached to my shorts, not the gait belt.  It was most unattractive.  He gave me a cardboard butt - flat as a board.  Ugh.  I shiver as the image plays over and over in my head.  Needless to say, that video was promptly deleted from my phone as soon as I showed it to my husband and he said, "Um, yeah.  We can get a better video than that." 

There's more news, too.  I made appointments to get a few MRIs.  It's been a long time- 5 years maybe?  Put it this way: they gave me actual films of my last MRI - so it was even before they were putting everything on CD.  I went last Saturday for the first two (brain and cervical spine) and I'm going back this Saturday for the third (thoracic spine).  Got home with my CD and popped it into my computer, just for giggles.  I had no clue what I was looking at but I was certain I saw new lesions.  So that spiraled into a mess of worry.  Three days later I got the radiologist report.  The phrases that kept jumping out at me: 

"No enhancing lesions."
"No active lesions."
"No gadolineum enhancing lesions."

and finally:
"No brain atrophy."

Gadolineum is the dye they use that makes new lesions (new disease activity) pop up like fairy lights decorating your central nervous system as thought it were a Christmas tree.  Well apparently, my brain and spine don't celebrate Christmas.  That's okay, I'll still send them a card.  So, no new disease activity.  Awesome!  And no brain atrophy - which means I don't have any hopeless "black holes" from old disease activity that would actually cause my brain to shrink.  Guess I'm doing somethin' right.  (sigh of relief)

That's it for now.  It's enough, isn't it?

1 comment:

  1. I am so happy for you! I know you were worried. You are one strong lady and I admire the heck out of you...
    And you're pretty darn good at this whole blogging thing:)

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