Life...Can't live with it can't live without it.

      Okay,  so I know I have been neglecting my obligations to this blog.  Life happens and sometimes we think we know what we need to know in a very short period of time. I thought I knew what I was supposed to learn, I was very far from it.  I started writing to help myself get all the thoughts out of my head, and put in a format to help me, and those who read,  realize what blessings I have received and what weaknesses need to be worked on.  It seems that I still have much to learn, and life is not finished with me yet. Nor I with life...

      After the trip to Vegas to see my sister off,  my family and I returned home in Coeur D' Alene.  We were in a mad dash to get everything we needed done before school started.  This is the first year that we will have all six of our kids in school at the same time.  Cherie was hired by Lifetouch taking photos of preschool age children.  She is doing a wonderful job and is getting high praise from her trainer and from the school directors.  Her job requires her to travel a couple times a month until they hire another photographer for the areas that she travels to.  The kids are doing great in school, most of them like school and look forward to the next day to start so that they can see their friends again. 

     We also received the results of the biopsy... Do you want to know what they said?  I am sure you do!  Officially I have Congenital Fiber Type Disproportion or CFTD.  What is CFTD you may ask well that my friends is the million dollar question.  I have read and reread the information my doctor gave me and anything I could find on the matter.  I don't think this is what ails me, lets see if you agree.  The following has been taken from WebMd.com.  I have marked the parts of this diagnosis that have raised concern for me.

"Congenital fiber type disproportion (CFTD) is a rare genetic muscle disease that is usually apparent at birth (congenital myopathy). It belongs to a group of muscle conditions called the congenital myopathies that tend to affect people in a similar pattern. Major symptoms may include loss of muscle tone (hypotonia) and generalized muscle weakness. Delays in motor development are common and people with more marked muscle weakness also have abnormal side-to-side curvature of the spine (scoliosis), dislocated hips, and the permanent fixation of certain joints in a flexed position (contractures), particularly at the ankle.  The diagnosis of congenital fiber type disproportion is controversial. The changes to muscle tissue that characterize the disorder can also occur in association with many other disorders or conditions including other congenital muscle disorders, myotonic dystrophy nerve disorders (such as spinal muscular atrophy), metabolic conditions, and a variety of brain malformations such as cerebellar hypoplasia. These conditions should be considered and excluded before a diagnosis of CFTD is made. Most patients with CFTD have no other affected relatives (sporadic). Some cases are inherited as an autosomal recessive or dominant trait. In one family, CFTD was inherited as an X-linked recessive trait."

     So in a nut shell, I have a disorder that also has all of its symptoms in common with some pretty severe diseases.  I was tested for the common Muscular Dystrophy strains, and that came up negative, so that is a plus!  On the down side I was not tested or the doctor did not rule out any of the other disorders that share the same symptoms.  I also find it concerning that I have very obviously lost all of my pectoral muscles.  The diagnosis says there is weakness, or loss of muscle tone but not the compete loss of muscle groups.  Hopefully I am not reading into this diagnosis.  I genuinely feel that I have been misdiagnosed, or there is just not enough research or information on CFTD to match it to my condition. 

     After the diagnosis I slumped into a depression.  I really wanted answers, and treatment so that I could resume a somewhat normal life.  I am having a very hard time finding value in myself.  I focused so much on the diagnosis as the beginning of the end of this chapter, but in reality I am in the start of another chapter, and the end is nowhere in sight.  I cannot hold a normal job.  I have to sit and stand at will to alleviate the pain in my back and neck and shoulders.  I cannot lift anything over about 5 pounds without difficulty and pain.  Easy chores like dishes, laundry, cleaning a bathroom are very taxing and I need a considerable amount of recovery time to complete these tasks.  If I do not have any pain management then it is even longer to recover.  I feel like I am a leech, and I am sucking the life blood out of my family.  I never thought that I would be here.  I do not have it as bad as some others.  I have a lot to be thankful for, and I know it will get better.  I don't know how or when, but it will get better.  I just have to find out what to do with myself now.  I have no idea of what I want to be now, I don't know what interest me anymore, or how to reinvent myself with the accommodations that I need.
   
    

    

Am I doing this right?

        I feel like Wiley Coyote.  He is hungry, all he wants is to survive. To make it to the next day, the next meal, the next cliff fall.  Wiley is doing absolutely everything in his power to reach his goal, his humble goal.  He doesn't ask for lavish restaurant food, or need rare delicacies to make him happy.  All he wants is the food source that he was created to eat, nothing more. (Sorry Roadrunner... that's you.)  How does Wiley obtain his goal?  By any and all means within his power!  He uses his intellect, his physical abilities, and patience.  He builds traps, and creates inventions to match the Roadrunner's speed.  What has he gained for his efforts?  30 years of hunger! (and possibly a doctorate in engineering)  I admire his will and dedication to his goals, but that doesn't fill his belly. (I will return to Wiley in a sec.)
        Yesterday at 9:30am I arrived at Deaconess Hospital in high spirits because for the first time in 6 months I have a real shot at getting an answer to my ailments.  I was a bit nervous, but so very excited to get it done.  Cherie was more worried than me I think.  I was called back by the nurse to change into my oh so flattering backless gown.  For the next hour or so I answered a plethora of personal questions about my health history and 10 times they asked if I knew what procedure was being preformed. "I am having a muscle biopsy on my left deltoid the size of my pinky finger." (gotta make sure they are doing the right procedure... no lobotomy for me yet!)  Finally I was wheeled to the OR and prepped for surgery.  The last thing I remember was a blood presure cuff tightening on my left leg.
        I awoke in a small room with a nurse hovering over me.  I felt great, like waking from the perfect nap.  I was ready to dress and go home, but the nurse had other plans.  She stated that I needed to recover for a hour to make sure there was no adverse reactions from the meds.  For some reason the anesthetic they gave me made me very feisty!  I felt so good that I told her thank you, but you can't keep me here against my will, I'm a grown man (I know that's debatable)!  Just as I was about to rip all the tubes and bandages off Cherie came in to check in on me.  I told her I was ready to go home to see the kids and the nurse wouldn't let me cause she is mean. With a confused look she stepped out to speak to the nurse about this behavior. (I knew Cherie had my back!)  I smugly waited for her to come back and help me out of there.  The second she came in the door I knew I was in trouble.  "Zachariah! (my trouble name) leave that poor nurse alone and let her do her job!"  With my head hug, I waited the last 45 min. until I was released officially.  In three weeks we should have a diagnosis!
        Upon returning home we went to work posting our project vehicles to raise money for bills, and to see my sister's missionary farewell next week.  I have a '87 Pontiac Fiero which runs, and a non running '76 Datson pickup that I posted on Craigslist.  I checked the Fiero to make sure it starts and drives.  I was hoping to get $1000 for the car and $300 for the truck.  As soon as I posted it I received a half dozen text from interested parties.  Wow!  We could have them sold in the morning and get bills paid before they get delinquent!  I had three potential buyers here this morning all at the same time and I felt that they would compete for the chance to buy the vehicles... if only the Fiero would start.  Two buyers left as soon as the new battery wouldn't take a charge.  The third stuck around and looked at the truck too.  Tears threatened to pour as he offered me $500 for both cars, a third of what I was wanting for the both together.  I wanted to tinker and fix it, but both of my arms are inoperable and I didn't have the strength to do it alone.  Reluctantly I accepted the offer.
        After signing the titles, and counting the money I went to my room and sobbed.  What more could I do to provide for my family?  Why would the car act up the moment it was selling?  I fell to my knees and poured my soul to my God, My loving Heavenly Father.  Money didn't appear out of thin air, or a millionaire didn't come drop a sack of gold on the doorstep.  I did however feel overwhelming peace.  I am $500 better off than I was, my "belly" would be full.  That, my friends is the difference between Wiley Coyote and me.  I asked for help.  I know I cant do it alone, I know the Lord has prepared people in my life to assist and uplift me if I but ask.  Praise be to him and his plan, I don't know what comes next and that is OK.  I am at peace, and my family will be fed.  Don't let pride keep you from blessings  that are waiting for you.
        Ask and ye shall receive, knock and it shall be opened unto you...
        

Smooth sailing from here on... Dang it, Here comes a storm!

        I've heard the expression; "Its darkest before the dawn." I was never quite sure of that, but I do know from my military and corrections experience that it gets coldest before the dawn.  There have been multiple occasions when I was on the graveyard shift and could see the sun light peeking over the horizon only to experience bone chilling cold before the full brightness was visible. That is precisely how I was beginning to feel as I returned home from surgery.  I could feel the cold envelope me, warmth and comfort was hard to find for a time.  I knew that things get harder when you try to make a change for the better, but had never really felt it personally.  Up until this point I had coasted through life as if being in the lazy river, floating along whereever the current took me.  Waiting for opportunities to come my way, never paddling or striving for anything better.  I was comfortable and comfort really means complacent.  I would justify my actions by saying "If I needed to change, God would make it happen."  Boy was I right, but not like I ever expected.   I was in dire need of a good swift kick to the nether regions, and I got a big one!
        The surgery went well, and I was home the evening of the incident.  I have patches of numbness throughout my forearm. The doctor said I may never get feeling back in those spots.  My pointer, middle, and ring fingers on my right hand are in a constant state of pins and needles as if they were slept on all night and wont wake up.  They are also numb on the outer skin.  They feel like somebody else's fingers when I touch them.  Swelling, dexterity, and range of motion are a constant obsticle, as well as my wrist cannot carry its own weight; it flops about with every movement. 
        I have always lived by the notion;"Don't ask others to do what you can do your self."  I was facing being almost completely dependent upon my wife.  She diligently helped me do the most menial tasks ; getting dressed, tying my shoes, bathing, retrieving dropped or forgotten items that I needed, and being my cab driver.  It also left her to do all the household chores and cleaning homes on the side for a few much needed dollars.  I learned patience and the value of receiving service with gratitude.  Cherie and I have experienced a closeness that I doubt we would've achieved with out this accident. (she truly is one of the great women of our time!)  Things were getting better even though times were very hard.  My children are helping around the house like never before.  My mother and Cherie both recommended blogging to get the words out and start healing the emotional scars. 
        The Lord truly can turn the bad and idiotic things we do to ourselves, into blessings and to help build his kingdom.  I am very grateful for that.  It is not all sunshine and roses, but i can see the light just at the horizon and can smell the sweet fragrance of peace and love not far off.  Since this incident I have quit smoking, and study my scriptures almost daily.  I strive to keep the sabbath day holy more so than I ever have before.  I am slower to anger and less argumentative.  I say this not to boast, but to show what I am willing to do to have His grace with me and my family.  I testify that he lives and knows each of us and he weeps with us during our dark times.  He also rejoices in our gains, and our personal triumphs.  I couldnt have known this joy if not for him and your support, yes you! 
     Tomorrow I am having a muscle biopsy to determine what is causing the muscle wasting, your prayers are felt and I thank you.  More to come after surgery, tune in next time, same Zach time same Zach channel!

       

Broken

      I was laying on the hospital bed waiting for the doctor to arrive and decide what was needed to be done to fix my shredded arm.  Nurses, Phlebotomists, and billing personnel came in and out asking questions and reading screens, while I tried to hold back the tears.  I was not crying from the pain, or for my situation.  Tears poured down because in that moment I realized I had neglected one thing that could have prevented this whole situation.  I was too prideful to admit that I needed help in dealing with my disorder and with the emotional shock of everything that was going on; No insurance, a genetic disorder that could possibly have been passed to my children, loss of my job and any way of supporting my family, and now I may lose my right arm due to a silly accident.  I knew that if I had turned to my Heavenly Father, and reached out to my Bishop, or my family sooner then my family and I could have peace instead of the feelings of worry, fear, and despair.  I didn't want to tell my loved ones that I am weak and cannot do this alone.  I felt like Elsa from the Frozen movie; "Conceal, don't feel, don't let them know." 
         Feelings of anger also surfaced in that moment.  If the Lord does really love me, and does not give us more than we can bear, then why am I lying in this bed torn, teary, and tattered? Shouldn't the Powers of Heaven uplift me and allow me to see where I was going? Maybe even an Angel descending from the clouds to administer to me like the Saints of old. I felt an enormous amount of pressure at this time. I felt as if I was asked to do way more than I could do. I felt as if I was alone.
        As I was in this mental battle between humility and extreme pride, my wonderful wife came into the room. I was blatantly spewing these thoughts to her and anyone else who happened to be in the room. She really is wonderful, she listened to what  I had to say and encouraged me when I needed it, and cried with me when I cried. (And I know there is a lot of crying going on, but I was under the influence of morphine) A short time later, my Bishop and his Counselor came to give me a Priesthood Blessing. I don't remember exactly what was said, only that I knew things would get better. Not this instant or maybe not next week, but it would get better. I was reminded of a talk given in Stake Conference about how the Lord loves broken things;

"Broken clouds give rain
 Broken storms yield light
The break of day heals night
Broken pride turns blindness into sight
Could it be that God loves broken things?
And yet our broken faith and our broken promises
     Sent love to the cross
And still that broken flesh that broken heart of his
Offers us such grace and mercy
Covers us with love undeserving
This broken soul that cries for mending
This broken heart for offering
I'm convinced that God loves broken me
Praise His name my God loves broken things."
By Kenneth Cope

I was and still am broken. But through His love and mercy I am on the mend.

Out of the Frying Pan...

                   OK where were we... Oh yeah, no insurance. After having to quit my job I lost my employer insurance and I signed up for Medicaid. Cherie was working part-time with the promise of full time work, but that never came. Even though she was only part-time, Medicaid dropped her and I from the policy but kept the kids on, saying our income was too high. (like $800 a month is too high...?) So now we're in a bit of a pickle. If Cherie kept working we could bring home at least some money and hold out for a possible permanent position somewhere down the road, or she could quit her job make no money but I could continue with my diagnosis. Decisions, decisions.... Cherie and  I talked about it, prayed about it, talked to others about it, and I even talked to myself about it (again I didn't answer) and we decided the diagnosis was more important that the part-time work. It was very nerve racking, we were scared to lose our only source of income.
                   The day finally came for Cherie's last shift, she was excited and sad all at the same time. She had a later shift, and while she was getting ready disaster struck. To make a long story short, I was attacked by four panes of glass. They tried to eat my right arm up to my elbow. Narrowly missing vital blood vessels and nerves. I remember the instant it happened like it was in slow motion. I was viewing the whole incident as if I was a bystander. I could hear every crack of the glass, every rip of my skin. I pulled my arm out from the teeth of the window, and viewed a gruesome scene. I had three 3-5 inch gashes on my forearm and elbow. It really looked like a great white shark had just finished gnawing on my arm. My pointer, middle, and ring finger  were instantly numb. My wrist hung limply and blood dripped liberally down my arm onto the ground. Before the pain came I cried out in disgust at what had happened. I ran around the outside of the house to the back door, screaming for Cherie to call 911.

                   Those of you that already know me, know that I will not go to the doctor unless absolutely necessary. (I once waited 18 hours before going in for a burst appendix and another 6 hours for e-coli
poisoning) I was yelling for Cherie to grab a towel because of how much blood was dripping out. I feel so bad for her, she had no idea what had happened and I was demanding that she do three different things at once; call 911, get me a towel, and don't let the kids see. I was in so much shock that I was running around the house with Cherie at my heels begging me to sit down. I even ran to the next door neighbors and asked them to watch the kids. By this time the ambulance was pulling up along with a fire truck, and a few police cars. This is exactly what I need... Not only was my strength failing me, I completely wrecked my right arm. My dominant right arm.
                     As they loaded me into the ambulance my mind was with Cherie and the kids. Will they be OK? Were they frightened? Would they look at me the same? How could this happen? Luckily, I had some good paramedics that kept me calm and helped me keep my mind on the task at hand. "Can you feel this? Move your fingers for me. Don't think about that right now." I just kept thinking "OK guys! Put me out! MORPHINE!" But that didn't happen for another hour and a half...

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.