Oligo Woe Is Me

Greetings!  Been a little while since I’ve posted.  The days seem to just slip by.  That’s a good thing up here in Northern Vermont.  It snowed a little yesterday.  And the day before.  Today, and this weekend, hopes to see maybe a leap into the very low 60’s. 

Anyway…today’s blog title is pretty accurate on how I’m doing.

As “they” say, I’ve got good days and I’ve got not so good days.  Actually I thnk “they” call them bad days.  But I like to keep my glass half full if you know what I mean.  When I first wake in the morning, it’s hard to get out of bed.  But with a little prodding from the kids I roll out, take my morning cocktail of meds, and it can then go either way.  I’m either feelin’ alright, or I’m nauseous and fatigued.  But push through the pain and I can shine it on for most of the day.  The weird symptoms with coordination continue, and I’ve got some weird “ticks” in my appendages.  They almost seem to be “nano-seizures” because it’s my body doing something I’m not consiosly intending.  I can really not suspect or blame it on medication, which was a theory before.  But I’m off of anything that would cause the loss of coordiantion.  So either my brain rewires itself, or it’s permanaent.  Either way, it’s ok.  I’m nimble.  I can adjust.

Who misses the Captain and Tennille?  The Captain played some funky keys.  Not like Billy Preston or anything, but for someone having to split his time between playing the keys and being the captain of some vessel…he’s pretty OK.

I still don’t drive.  I still can’t focus on more that one thing at a time.  I’m easily confused by seemingly simple tasks.  I walk into rooms and forget why I went there.  But as long as I’ve got the Captain and Tennille and Billy Preston around I’ll be fine.  I’m still Rob.

~R

Home, home again

I like to be here when I can.

And when I come home cold and tired

 It’s good to warm my bones beside the fire.

Yes…I am home!  And I apologize for the delay in getting this blog entry posted.  The problem is the I’ve lost some cognitive coordination, and even worse, coordination of my fingers.  I say worse because given a choice I’d rather be a little wacky upstairs than struggle with something I’ve done for 30 years super-hero style.  Figure something like clicking a mouse with your index finger, but your middle finger clicks instead.  Or forgetting where the keys on a keyboard are.  I hope it will come back.  Crazy, huh?   I think I’ll need a personal secretary to dictate my blogs to.  Oh yeah…I have a personal secretary already.  Thanks Kasey!

I will post again soon.  I promise.  I’d like to share the post-treatment effects I am experiencing.  As well as my “Flock Of Seagulls” hair style.

Peace and love,

Rob

Today was a nice day here in Boston.  Spring-like.  Or should I say “Irish Spring?”  (remember that commercial with the Irish boat captain that cuts a slice out of a bar soap to show us how “fresh” it was?)

When I came up out of the bunker from the proton accelerator, I followed the sunshine and turned left instead of right.  I ended up wandering around the downtown area like a tourist.  I saw old churches, cobblestone streets, and more than one Irish pub getting ready for the big night.  You might even say that for those two or three hours that I felt almost….”normal”.  I didn’t want to stop walking.  But after 3+ miles of wandering I felt I was definitely pushing my luck.  So I made my way back to my place and now it’s 6 hours later…and I was right.  I totally overdid it. 

It was a fair trade.  Feeling normal for a while was worth being totally exhausted and feeling a bit green.  (get it?  green?  hahha…Irish joke). 

Five more trips to the proton bunker!

Happy St. Patty’s Day!!!