Thursday, August 16, 2012

Revisiting old stomping grounds...a new beginning...change...whatever.

I have wished for a long time I could get into this blogging bug that so many people seem to have.  Life always seemed to get the better of me, I lacked the time, or really anything interesting to write about.  I'm a stay at home what.  Actually, that isn't true anymore.  I work part time.  There are loads of funnier, wittier, more heartwarming or piss yourself laughing blogs about motherhood out there.  I am not worthy.

So I want to change it up.  I want to give myself some challenges, and write about it.  Online journal of sorts, I hope some others like me will find this and join in.  I hope to make a difference.  I hope to cause some laughter, tears, and light bulb moments.  I hope you'll join me.  Motivate me.  Keep me going.  Because I sure as hell am going to need it!  Here goes!

I have an ABILITY.  I am so not ready to put a dis in front of that word.  Someday it may come to that, but not anytime soon if I can help it.  I am unsure if I ever blogged about this, or have even talked much about it.  But it is starting to kick my ass, but I refuse to go down without a fight.  I have Limb-Girdle Muscular Dystrophy 2A.  Diagnosis came in 2006.   I had joined the military in 2001 (before 9/11) and made it half way through boot camp before going into beginning renal failure.  I don't think the Army could discharge me fast enough!  I know they knew something was amiss, but they never told me, just said I was unhealthy and unfit for duty.  After having Jonathan, I had to visit the oncologist to do all sorts of blood work to find out if I had a clotting disorder.  Renal issues again, they wouldn't let me leave until they pumped me full of fluid and made an appointment with a nephrologist and a neurologist.  Kidneys weren't looking to hot, and he was convinced I had some other sort of metabolic disorder.  I ignored it all.  I didn't want to deal with it.  Fast-forward to being pregnant with Jacob.  Had the normal 20-week ultrasound done, they spotted issues with my kidneys, so I had to have further testing.  And then the neurologist sent me to a neuromuscular clinic...after Jacob was born I went in for a muscle biopsy, and then more kidney testing.  More blood work...and more blood work.  Only to receive a phone call in June 2006 with my neuromuscular doc telling me "you have muscular dystrophy" over the telephone.  Yes, the telephone.  And I have ignored it.  Until now.  Maybe it was denial.  I had read up on it, but I didn't fit the description.  I was fine.  I've given birth and survived THREE children.  I survived almost 2 phases of boot camp.  This is ridiculous.

So here I am now.  I keep hearing horror stories that people are in wheelchairs 10 or so years after symptoms appear.  Or at least walking with a walker/cane/crutches.  I am on year 11.  No walker.  No cane.  And most certainly no wheelchair.  But I feel it.  This disease is slowly creeping up on me.  So I am going to challenge myself.  I'm going to go back to the neurologist, back to the nephrologist, and get baselines done.  I need to revisit both anyway.  I am going to exercise.  Daily.  Starting with at least 1 mile walk a day, along with some weight training.  Crunches.  Oh how I hate crunches.  But due to growing three watermelons in my stomach, my muscles were stretched to the max, and there isn't much left.  I need to build them back.  Crunches work.  I need good core muscles...wonder if I can get a 6 pack?  Or at least close to it???

I've made my decision.  I really really really want to sit back and cry about this.  But I'll be damned if I give in to a wheelchair.  I've never gone down without kicking and screaming, and I refuse to start now.

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