Tuesday, May 22, 2012

MG: The "Will I Be Able To Function Today" Disease

Myasthenia gravis is probably THE most UNpredictable disease EVER.  I have been doing amazing.  I mean, CRAZY-amazing.  Like being able to run errands with Jacob to Kalamazoo without Doug-amazing. 

This morning I wake up, and I feel like I'm in a fog.  Everything seems to be going in slow motion.  I know I have tons of stuff to do, but my brain can't focus.  My eyes feel thick and heavy and like they are full of sand.  I even slept pretty well.  But I've been "up" for 4 hours, but I'm no where NEAR awake yet.

We had to go to a visitation at the funeral home in town last night.... The man who passed away lived a full, wonderful life and had an obviously impact on many, many lives.  It was wonderful to see how many people showed up and listen to people's conversations about what this man had done for them, or how he had affected their lives in so many wonderful ways.

The man was old (89) and had had a full life.  He was saved, so the family had great comfort knowing he is now in Heaven, cancer free, pain free, rejoicing with the angels.  What hope!  Without that hope, I would not exist.  It's as simple as that.  It keeps me going, knowing that someday I will see my Jesus and all those who have gone before me, and that I will finally be 100% free of this wretched disease.

Big BIG thanks to Lori, Steve and their kids for watching Jacob last night while we went to the funeral home.  Jacob did NOT want to leave.  Like REALLY did not want to leave.  We had to drag him kicking and screaming under threat of spankings and promises of happy meals....But we finally got him away.  He just had SO much fun playing with the kids, and Steve....and he's STILL talking about Miss Lori.

We also gained a HUGE "blaster."  That's what Jacob calls nerf guns.  This thing is bigger than him...almost.  Jacob is a head taller, but the gun is GINORMOUS.   I can barely lift it to move it.  And he LOVES it.  He keeps saying, "It sure was kind of Miss Lori to give me this blaster, huh mom??"

Seeing joy in my child is worth all the dart guns in the world!  May everyone who reads this have a special blessing today.  Love to all.

5 comments:

misssrobin said...

Seeing joy AND gratitude from your child. You've done something right.

Sorry about the down day. That's one of the ugly parts of chronic illness people without it don't realize. How awful the unpredictability is. Yes, I'd love to go to the movies with you this weekend if I feel well enough. I'd be happy to help with that event if I feel well enough. I hate not being able to commit or plan.

I'm glad you have support that stepped up to help. May you be blessed this day with moments of peace and joy.

Unknown said...

4 hrs to wake up. That is me today also. I am always learning something from blogs.....

Unknown said...

4 hrs to wake up. That is me today also. I am always learning something from blogs.....

Unknown said...

4 hrs to wake up. That is me today also. I am always learning something from blogs.....

CoconutPalmDesigns said...

I'm sorry you had a rough day. I hope tomorrow is much better. Hugs for you!

Cheers :-)
Joanne
- CoconutPalmDesigns