Its a long dark road.... or is it?

     I just kept pushing everything away in my mind.  This isn't real, I am fine.  I actually feel fine most of the time don't I?  Nothing is wrong with me, I am strong, capable, able, and determined.  Nothing is wrong with me.  I survived the Army, and being outnumbered 200 to 1 as a corrections officer.  Nothing is wrong with me.  I climb mountains, and ride motorcycles, and do cool flips on the trampoline.  Nothing is wrong with me.  I fish, hunt, shoot guns, and love camping.  Nothing is wrong with me.  I chase snakes down their holes, and play pranks on people. Nothing is wrong with me...  If that is true then why does it hurt to sit without upper back support?  Why does my shoulder ache so bad that it wakes me from sleep.  Why is there constant pain in my pinky finger of my right hand, the same side as my shoulder?  Why is it hard to carry backpacks on my shoulders?  I am fooling myself.  The pain is there to tell me that there is something wrong.  What if I took medication?  Could I be normal then?

     I took every med I could to contain the pain and to appear as normal as possible.  I still had a good sized collection of meds from my military days.  Hmm, no pain now, but why is it hard to think?  All I want to do, or have energy to do is sit and check out of reality.  Why cant I think of words, and cant remember my train of thought?  Oh no.... I have no pain, but where is my brain.  I guess its "No pain, No Brain!"  Well phooey!  I can't hear my Heavenly Father's whispers.  I can't walk through the plant at work without major rest time afterwords.  I have to quit my job and focus on my health. I don't know what to do anymore.....  How did I get here?

    These are the things that I have said to myself and others. I tried to continue like normal with the new circumstances that I now have.  It was time to face the music.  Time to accept my path and move forward, but how and where was forward?  At this time the kids are still in school but only have a few weeks left.  I had to quit my job due to stress (which is said to accelerate my condition)  and the inability to be on the production floor as much.  Cherie was offered a job at the mall, and took it, but it was only part time starting out, with the promise of promotion soon because of her managerial experience.  The only thing left to do is get diagnosed!! Things may be OK I guess.  It cant get much worse than this.  I know there are millions of people in this world that have to go through much tougher, painful, sad, experiences than me.  I started to feel a bit better and almost proud that I would be chosen to take on this sort of trial.  I can do this and I will do this..... until our insurance was canceled.

Dude.... This is nuts.

     Have you ever heard something so unexpected that your I.Q. drops temporarily?  That is exactly how I felt the whole drive home from the appointment.  In my head I kept saying "Dude...this is nuts!"  Luckily I was so shocked that I didn't answer myself, or I may have had a whole different set of problems.  I came home after the drive almost excited because I finally had a direction, an answer to the pain and weakness.  Cherie was not at all excited, she was far from it!  Looking back I can definitely see where my excitement came off as coo coo for coco-puffs.  I had a direction to look toward and even though the outcome may be worse than I was expecting it is better than not knowing.
 
    After some of the surprise wore off, I started researching Muscular Dystrophy, and just try to learn as much as I could about it.  From what I have read, and from what the doctor has suggested, I have FSHMD.  It causes muscle loss in the pectoral muscles, facial muscles, and the muscles that control your shoulder blades.

Blades don't want to stay down anymore.

It also eventually causes problems with walking.  The muscles that control the up and down motion of your foot starts to weaken and then not work.   It comes and goes in spurts, it may not progress much for years, or it can rapidly progress in a matter of months. It is genetic, and can be passed from parent to child, or skip generations.  The only ways to diagnose are muscle biopsy, or genetics testing.  The interesting part of this is usually the facial muscles are the first to weaken.  So far I have not had that happen yet.  It is another reason the diagnosis is so important, to rule out any other disorders that can have similar traits.
   
     Holy Hannah Montana!  That was a lot to take in when I was researching this dystrophy.  I remember being so upset that I may not be able to carry my children again, or give piggy-back rides, or even ride motorcycles with them as they grow.  All of the things I loved about my childhood, and wanted to share with my children was no longer a possibility in my mind.  I couldn't even talk to Cherie or my Mom about it without sobbing and feeling very sorry for myself, and for my children that they wouldn't have my experiences that I had with my dad as a kid.  I love how I was raised and the experiences I had back then and I wanted to give that to my kids.  What can I do now, sit and play video games, and watch TV with them?  Is that what I am destined to do with my life?  Sitting and waiting for my family to finish enjoying a bike ride or hike, watch as my wife carries the heavy grocery items while I carry the chips or bread.  Staying home to watch the kids while Cherie does everything she can to make a buck to support us?  I started to allow myself to sink into a depression, to feel like all was coming to a horrible reality.  The Army vet, wrestler, MMA enthusiast, and active dad was no more.  If that guy is gone, who takes his place? 

Going to the Neurologist.

        Last you were here I was taking my shirt off... for the doctor that is.  After he checked my breathing he asked me about my chest.  (Now those of you that saw the previous page can see that I used to have pectoral muscles.  Not any more...)

I am flexing my chest as hard as I can in this pic. notice the divot?

I guess because of the amount of time that had passed from high school to now, I hadn't really noticed the change, and had adapted to the weakness in my chest and back.  After explaining some of this to him, he mentioned that I possibly could have a pinched nerve or other factors that are causing the muscle wasting.  I still didn't think too much of it, I had been dealing with pain, weakness, and stiffness for a lot of years.  He recommended a neurologist and I made an appointment.  The appointment wasn't for 5 months because of the waiting list.  I put it in the back of my mind because it was so far off.  This was in November of 2013.

          One day in the end of December I received a call from the Neurologist office saying that they had a cancellation and could I be to their office at 9am in two days.  Wow! I couldn't believe my chances!  I thought for sure I would have to wait the full 5 months.  After 15 years of questions maybe I would get a few answers. 

          I was so nervous for the appointment!  This one hour of my life coming up could change me!  I just knew that I had nerve damage, or a very fixable treatable condition.  I was dreaming of going to the gym again, and this time my chest would bulk up like every other guy with my type of frame.  I was mentally absent while the nurse ran the normal battery of tests. Blood pressure, temp, weight,and height. The nurse left me assuring me that the doctor would be in shortly.  It seemed like 45 min but was probably 10 when the doctor waltzed in with his nose in papers.  He was my height, maybe a little lighter than me.  The doctor had salt and pepper hair combed professionally to the side, he gazed up as if looking beyond bifocals, still keeping the papers in view.  "Hi, Im Dr. Carlson, what can I do for you today?"  This is the moment... "Well let me take my shirt off and show you."  I replied worried but with purpose, and began to take off my shirt.... again.  (I normally don't strip so much just in-case you're wondering.)  He looked, poked, prodded, zapped, and googled (yes my doctor used Google to do some research) for quite awhile before he told me that ,without testing, he is pretty sure that I have facioscapulohumeral muscular dystrophy.... What in the world does that mean?
           

       
        

Lets start here...

              I guess this is it.  Time to tell the world about me.  To start at the beginning would take far too long, and cause me carpel tunnel from all the typing.  Let me start with an introduction, and go from there...

              My wife, Cherie, and I (Daddy Zach) have 6 wonderful kids between the two of us.  Three are from her previous marriage; two boys and a girl, and three are from my previous marriage; two girls and a boy.  They range from ten years old to six years old.  We really are the "Brady Bunch".  I spent seven years between the Nevada Army National Guard, and the US Army.  I also have 3 years experience in corrections in the State of Nevada. 

              At the beginning of this year I was a Safety Manager for a very well known dairy manufacturer. I went to the doctors for a wellness checkup to lower the cost of my medical insurance.  The appointment was fairly routine, until the doctor asked me to take my shirt off.  I took of my shirt and the doctor proceeded to check my lungs with his frozen tipped stethoscope.  Once he determined that I in fact could breath, he asked me about my chest...

          Since about the age of 15 or 16 I noticed that my shoulders looked different than the other guys at my school, and my chest muscles just wouldn't get any bigger no matter how hard I pushed myself in weight lifting class, football, wrestling, or track.  I definitely had some definition, and strength but, my shoulders always rolled forward, con-caving my chest.  It was a running gag with my buddies and pretty much anyone that knew me.  They would push their shoulders forward as much as they could and come up to me and say "Whats up Zach?"  waiting for me to notice their awkward stance.  It never bothered me too much and I always assumed that I was jut built a bit different.