In The Wee Small Hours of The Morning

I love the wee small hours of the morning!  Literally!  Early morning is when I feel most like my "old" self.  I'm at my best!  Most of the time everything works fairly well-eyes, hands, feet, voice, mouth, esophagus...yeah, I think about my esophagus everyday!

I also love the song-it's from the 50's-recorded by Frank Sinatra (and countless others).  It's on my Sleepless in Seattle soundtrack performed by Carly Simon. Go ahead...download it...it's Carly Simon for goodness sake!

I wake up early each morning so I have time to count out and take necessary medications.  I wake up early so I have time to prepare breakfast, lunch, and snacks for the day (the esophagus remember).  I wake up early so I can do one or two things to take care of my family.  I wake up early-while the whole wide world is fast asleep-and think...

I think about the girl I used to be and I miss her...but then I breathe and keep thinking.

I think about the day before me and I dream BIG...then I smile and make a realistic plan.
I think about family and friends and pray for loved ones near and far while I'm eating s-l-o-w-l-y. 
I think about the tasks I left undone the night before and notice that many are lovingly and imperfectly completed.
I think about what I can do...and then I do it!

I love the wee small hours of the morning!

Look! I'm Holding a Fork!!!

I knew something was wrong...

I tried to be optimistic.
I told people, "No, I'm okay!".
I woke up every morning determined to do everything I wanted to do.

But I knew something was wrong.

Evenings were the worst.  By the end of the day I couldn't talk very well, I couldn't walk very far, and I couldn't hold a fork.

It was heavy, awkward, ineffective...and did I mention HEAVY?
All of a sudden using a fork was difficult.  I had to concentrate on an activity that used to be automatic!  Why was this so hard?

When I was able to lift a forkful of food to my mouth it was hard to chew...and sometimes food would fall out of my mouth!

It was discouraging, embarrassing, and NOT sexy.
The fork became my nemesis...

That's why using a fork today makes me smile!  My family lovingly endures my joyful outbursts. They watch my fork twirling routines. They cheer when I use two forks at the same time! (Actually SuperDad cheers...the ABCs smile weakly, shake their heads, and whisper, "Stop WonderMom! People are staring at us!") I know they are proud!

Look!  I'm Holding a Fork!!!  It's kind of a big deal!

Choices

Yes, it's been a while since I've posted anything...I've been a little busy adjusting.

Adjusting to seeing a neurologist in a big city 500 miles away from home.
Adjusting to taking medication every few hours.
Adjusting to a deeper appreciation of the small things.
Adjusting to the joy I receive from holding a fork at night. (family joke and future blog topic)
Adjusting to doing EVERYTHING differently...


I have a disease called Myasthenia Gravis.  What? I know, right? I had never heard of it either-until a few months ago. 

Now I have to make choices. Yes, I have always made choices. I realize that we ALL make choices. But now, I have to think about my steps, my activities, my words, the weather...

Inconvenient? Sometimes
Frustrating? Occasionally
A blessing? Surprisingly YES

Today I chose...
tending flowers instead of washing dishes.
resting instead of a family outing in the heat.
laughing with my sister on the phone instead of complaining about missing family outing.

I don't always make good choices.
I over do it.
I tell everyone "I'm fine" when I'm starting to struggle.
I wear sparkly flat shoes that aren't very supportive.

I'm adjusting remember?

This Is Ridiculous!

It's my new "life phrase".  It accurately describes my current situation while remaining positive, lighthearted and appropriate. After all... I AM constantly reminding the ABCs to "be appropriate". Other appropriate phrases I now use daily include, "Seriously!?!" "Oh CRAP!" "Thank you for picking that up." "Dang it!" "No, no, I can..do.....it....(sigh)... (eyes closed)...Thank you for doing that for me...(sigh)." 

Of course this post could not be a true Golden Lasso Tale if I didn't admit the TRUTH...Recently, I've had days where negative, heavy, inappropriate thoughts swirl in my head, roll down my cheek, or hang in the air above a broken glass. 

Ridiculous-absurd, comical, ludicrous, senseless, silly, foolish, stupid, fatuous, preposterous, nonsensical, senseless, outrageous.

"This is Ridiculous!"  
That's why I tried to ignore it.
 I tried to use my powerful, positive attitude to make it go away.
I didn't go to the doctor because I was going to be okay tomorrow...

Sometimes ridiculous things happen...
Sometimes I trip or fall down.
Sometimes I drop, well, everything.
Sometimes I can't multi-task...who am I kidding? I have lost this superpower.
Sometimes I am so exhausted that I can't do the things I love...or the laundry.
Sometimes I walk with a cane (like Yoda and Dr. House).
Sometimes my family gets frustrated when I leave my cane at home because I'm trying to walk without it and I get stuck.

Some of you are reading this and thinking...What???  Why didn't you say something??? 
Because I was trying to make it go away with my powerful, positive attitude!

I haven't written anything for a while.
I really didn't want to write about this...this ridiculousness.

Then I realized...this ridiculousness...is pretty powerful.

Powerful-fierce, passionate, ardent, strong, overpowering, overwhelming. important, dominant, compelling, convincing, persuasive, forceful.

I feel a new "life phrase" coming on...