Sunday, September 12, 2010

Setting a second baseline?

Went for pre-op on Friday.  I'm going back into the hospital Tuesday for a second venogram/angioplasty.  I feel like I should talk about my improvements, etc up to this point and we'll probably film some video today...

But there's not much to report. The two major improvements, with spasticity and bladder, haven't stayed 100%. Last night, for example, I probably got up 4 times to pee and that's been happening more and more. It's not a restful night's sleep when you wake up every couple of hours, only having to settle back down again throughout the night. Ugh. Seriously.

And spasticity is still improved by about 75%. But I'm also taking Ampyra and I notice when I skip a dose that the stiffness in my legs reverts to a pre-angio, pre-ampyra state. So should I attribute improvements to that instead? Who freaking knows anymore. By the way, can't really say that Ampyra has helped with leg strength at all... but, it doesn't make me sleepy like other anti-spasticity meds out there so I'm probably going to stick with it.

Balance is better and I'm making gains at physical therapy. But it's important to stress that those improvements are marginal and relative to my previously sub-par level of function.   Yes, I'm walking a bit better and even taking baby steps without any assistance.  But I can't help but wonder (oh yes, I'm channeling Carrie Bradshaw): is that just a result of me wanting to try harder?  Could I have taken those steps unassisted before but never attempted it because I was convinced I couldn't?

Even if the only result of the first venogram is an unearthing of some plucky "can-do" motivation that I never possessed before... is that enough? I don't know right now. Maybe this isn't the most encouraging blog ever. But who said I was blogging to motivate others? It's just a document. For selfish reasons, at that.

I'm trying to approach Tuesday with zero expectations in the hopes that I won't be let down. I'm trying to be ambivalent. Yes, I'm still nervous and still just the teeniest bit hopeful. It's not possible to walk (or roll, in my case) in to a hospital knowing someone's trying to fix you and not hope for something, anything.

If there are no more improvements, I will stay on track with physical therapy and diet and try to figure out which (if any) drug I will subject myself to. I'm just so tired of waiting for something to work.

And, now that I think about it, I'm not so sure I'm going to post any more videos. I will film them, for posterity if nothing else. But I don't want to give anyone false hope. I could post videos of me taking baby steps without assistance, standing with my feet together and arms out to show improvements in balance, etc etc. But I'm not doing those things all day, every day. It's a snapshot of me at my best before I'm exhausted, or stressed, or had a bad day. Hell I also take a few minutes to slap on some mascara and fix my hair - that's not even accurate. Most days, I'm in my pj's and washing my face/bedhead repair is the extent of me "getting ready for work", because I work from home and don't need to dress to impress. Though it may be a better version of me, it's not real.

Sorry kids, I'm in a crabby mood today. More to come later this week or next...

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