mswillow's blog

End Game

Hi folks, 's me again. It's been quite a while since last I posted here. I'm on officially pulse 66 now, day 8 of a planned 10. I feel ... slightly under the weather. That's all :)

When pulses got tolerable, I ramped up the length and shortened the time off. After several week-on, week-off pulses, I'm doing ten on, seven off, and plan to go to full-time next month.

I am seeing improvement, but it's not earth-shattering. Things should get better soon, as I work out a new plan with a new, paid caregiver. Vikki's had it caring for me, and I can't blame her. She plans to get the fnork off the West coast, possibly going to Atlanta or Florida or Arizona, where it's warm. Me? I love this area. I'm here for good.

Forgive me, Father, for I have sinned ;^)

It has been 3.6 pulses since my last post. They're not getting any easier, but I'm still doing them. I'm now on day four of this pulse. It started off feeling like a mountain was dropped on me. Day two, it started with a mountain range, and that night I spent under a subduction zone. It got better day 3, and now it's sliding downhill but thankfully not fast. On better news, I have a pic of a wedding ring for my East-coast f2m-ish friend. Its over a carat worth of natural, untreated alexandrite from India, set in sterling silver.< Hope you like it.

I'm baaack. Good news, too.

Well, I did two pulses since the last post. The worst I felt, before charcoal on day 5, was "lousy." Even better, progress is finally happening - yesterday, I actually managed to stand with minimal help for 15 seconds. Way cool! Soon, I'll go fulltime on metroi, and be flying. Whee! :)

Another day, another pulse

Vikki tells me this is number 58? Feels like infinity plus ten to me. Last one was ten full days long; I'm aiming for 8 or 9 this time. Whee, what fun.

Planning ahead

I've got my annual physical on Friday, and, given my rate of improvement, it'll be time to start planning what happens next, after I've gone to full-time metroi. What's the anti-viral drug, whats the dose, and when will I start it? Finding this info by nose-navigating is frustratingly difficult for me. Any assistance would be appreciated.

Making some progress, I think.

Hi folks. I stretched my last pulse to 8 days. Felt miserable, true, but dammit, I wanna get better fast! It seemed to work - I've been able to use my exercise cycle again, without Baclofen even, and I have some use of my left thigh muscles. So, having had a bit of recuperation time, today I started pulse #aleph-null, I'm by no means done with pulses yet, but I can feel the omega pulse getting nearer.

Just another pulse, again.

Pulse #aleph-null, again. Planning on 7 days, again. Nothing new, just slogging through it. Again. ::sigh::

She's at it again.

I just started pulse #aleph-null, after a nice long break. Still seeing only trivial improvements, but at least it's improvement.

Rocks are getting cut, and jewelry being planned, with Crystal. Still no photos, though. Vikki had to fix my exercise cycle - I'd worked it so hard that all the nuts holding the motor down had fallen off. Despite that, still no real improvement in limb function. I'll keep working at it.

The battle starts anew

I've started pulse aleph-null today. This one should be another week-long run. The last one was ok until day 6, so I'm hoping this one will be that smooth if not better. Exercise is a real pain in the backside - legs are doing ok if I take a baclofen to calm the tremors, but exercising my least-disabled arm is tough - will see if baclofen helps there, too.

Yet another pulse

Hi folks. I started pulse aleph-null today (aleph-null is the first number past infinity. Lame math-nerd humor). I'm planning to go a week on this one.

It seems to be helping. I've been riding my motorized exercise cycle this month, and I'm getting some range-of-motion from it. Between the pulses and exercise, it seems that my sense of balance, the first thing I lost, is returning This is a mixed blessing - I'm rather queasy most of the time, when I'm not actually barfing my guts out. Bulemia as weight-loss, how quaint! :^/

Mom, she's doing it again! :)

Hi folks. Pulse number aleph null. I'm aiming to make this a 6 or 7 day pulse - yeah, by the end I feel like something the cat brought in but wouldn't eat, but it seems, finally, to be doing some good. Whee, what fun. Not.

It's pulse time

Pulse number aleph-null. Aiming for 5 days this time, not 7 like the last one.

I'm at it again :)

Day 2 of pulse Aleph-One (lame humor for any math nerds). This one seems easier, by orders of magnitude. Adding to that, I can now, fairly reliably, kick my left foot off the footrest, and moving my right arm is much easier. I can usually get my thumbs outside both fists, and even straighten out my fingers most of the time. Even my leg tremors are easier to halt, and less intense too. In short, the treatment is working.

And, on other fronts, I've found a new friend, Crystal, who's helping me cut gems and make jewelry. She's cut 5 cabs for her to keep, and 3 for me. Next week, we'll probably start making a silver pendant or two.

Does it ever get easier?

Day 3 of this pulse. Feel like a herd of hippos with diarrhea have sh*t upon me. Ick. And I'd thought this pulse would be easy!

Still slogging away at it.

Started another pulse today - 44? 47? I lost count. Anyway, feel cruddy, but that's normal. Tried some PT yesterday, a pedal thingie - 20 minutes and couldn't do one half rotation. Will keep trying.
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