Mitochondrial Awareness Week

It's Mitochondrial awareness week so I wanted to have a little post to bring awareness to you all.
Think back to biology class when we apparently learned about mitochondria {those things that are responsible for producing most (90%) of the energy that's needed for our cells to function}  I say apparently because I don't remember much from biology except that my bff was in the class and we passed notes the ENTIRE time.  Anyway, when you have a mitochondrial disease it can shut down some or all of the mitochondria, cutting off this very important energy supply.  Since it can effect one type of cell or many types of cells, the symptoms vary from each person.  Which means the doctors can not give you any kind of an answer as far as what to expect.  They just don't know yet.  Muscle and nerve cells have such a high energy demand and since they aren't getting it the result is "you become jacked up".  {Those are my words}  My personal symptoms with it include: muscle weakness {like I can't squat over a toilet anymore which is a huge deal because even though my bladder needs to empty itself every 30 minutes, I refuse to use public restrooms}. I'm talking weakness where some days it's hard to hold my head up because the muscles in my neck are so weak.  I can't carry my kids or hold anything for more than a few minutes before my arms become useless and then need to recover.  Every day I feel like I did a huge workout but I didn't because I have exercise intolerance {I used to walk at least a couple of miles a day pushing a double stroller, participated in the breast cancer 3 day (60 miles) twice, and did all those crazy work out videos daily. Not anymore}  Now what do I do?

I sit and relax keeping my mind occupied with Blogs, Facebook, E-mail oh and I have 2 kids and 2 dogs that need constant attention.  So I rest as much as I can but really I am using up all the energy I have to love on my family.  Totally worth it!!

I also deal with migraines and heart palpitations (pvc's) and some breathing problems.  I've got some other problems too but I'm not going to bore you with it.

One of the days this week (I think Sat or Sun) is National Stay In Bed Day to support mito.  Since I can't remember exactly which day it is, I have decided to stay in bed both just so I don't miss it.

Wanna join me?

I have another appointment with the neurologist next month and I am hoping and praying for some more answers.  If you want to read about my previous appointments you can do that here or here.

As for now, my future is bright.  I am surrounded by love.  I see the light in life and always will.  This little disease of mine doesn't define who I am.  I am a happy person and consider myself beyond blessed for the amazing life I have had.  Not many people can say that they had the best life from birth till now, but I honestly can.

I gotta tell you, I have learned so much from all of this.  I've learned so much on the value of life and love.  I pray to God that there will be a cure tomorrow and all of the ick will go away.  I promise to take the lessons I learned and be a better person.  I want to be there for my kids when they grow up.  I want to play hard like we used to.  I want to jump rope.