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 mom...so 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.

Reality Check.

I have muscular dystrophy. There. I said it.

Yesterday I was moving hay bales and I am paying for it this morning. I generally don't have many symptoms of it, except when I do some sort of strenuous activity. I have what they call Limb-Girdle Muscular Dystrophy. I got booted out of the Army in week 5 of basic training because my body was failing me, and this was my first clue. It took me the birth of both boys to actually see a doctor to find out what was going on. Generally after childbirth you feel like you got hit by a mack truck for a few days. Well, my truck hit me, ran me over a few times, and kept coming back to run me over some more. Instead of taking a few days to be on the mend (mind you, childbirth for any woman takes quite some time to recover from, but I am talking just the ability to get up and move) it takes me a few weeks. I remember struggling just to hold the boys. When Jacob was 4 weeks old I had a muscle biopsy done, it came back abnormal, so the doctor wanted to do a muscular dystrophy blood panel. I remember hearing him say that, but I don't think it registered. And then I got the phone call. Yes, I found out, on the phone, that I had muscular dystrophy. He told me the exact name of it, asked me if I had any questions, and said to go back and see him once a year. Nice. Real nice.

Needless to say, I have not been back. I successfully gave birth to another child, but did it without the use of pitocin (yeah for natural childbirth!) and my body responded a bit better. I don't need someone to tell me how I am doing. I think I am pretty good at figuring that out for myself. I have already been told that there is nothing I can do to make it any better, he pretty much told me that it won't kill me, but I may be wheel chair bound at some point. Yay! Thanks for the good news! Maybe the 11 year age difference between my husband and I is really a good thing! Motorized scooters, here we come!

On a good note, I am going to be calling my doctor to see if I can have insurance pay for massage therapy...I will let you know! ;)