Monday, May 6, 2013

My Story-The Beginning-Part Two

          From September to December of 1997 I was just your average sixteen year old girl.  I was a junior in high school.  I was doing all the normal things that teenagers did.  I enjoyed hanging out with my friends and going on dates with my boyfriend.  I had my own car, a 1988 four door 5-speed Honda Accord.  (I couldn't wait to get my driver's license so when I turned 16, I went that day.)   I worked two part time jobs.  I was a server/cashier/hostess at Uncle Bud's Catfish House and  I worked at Park Grocery Bait and Tackle Store on the weekends.  My grades were good with very little effort.  All and all I was just enjoying life.

     On September 22, 1997, I had the first of MANY doctor's appointments.   I meet with my pediatrician so she could look at my knees.  She ended up referring me to an orthopedic doctor.  Remember, that was back in the day when you had to have referrals and approvals before the insurance company would agree to cover your medical expenses.

     I am very fortunate to have my medical chart from my pediatrician and copies of most of my other medical records since then.  The notes from my chart state that my aerobics teacher thought my knees appeared to be double jointed and worried about that leading to arthritis later in my life.

     After a three month wait, I had my first appointment at the Center for Sports Medicine with Dr. Odom on December 15, 1997.  During the first visit with Dr. Odom, we discussed the issues I was having.  I told him of the difficulty I had climbing steps and the length of time it took me to walk certain distances.  I had also starting noticing new problems.  If I sat in the floor, I would have a very hard time getting back up.  I had to have something to pull up on, whether it be a person, a chair, or a table.  I would also fall for no apparent reason.  It was almost as if my legs would just give out and with no warning I would hit the floor.  Dr. Odom watched me walk and evaluated my strength.  He decided we should start with some x-rays of my legs and a little blood work (you can't even imagine how much blood I have 'given away' over the years).

     My second appointment with Dr. Odom was about a week later.  During this appointment, I was told that my knees appeared to be fine from the x-rays.  My blood work showed that my CPK levels were very elevated.  CPK (creatine phosphokinase) is an enzyme expressed by various tissues and cell types.  Normal CPK values range for 60 to 400.  Elevated CPK levels can be an indicator to several different issues, one being muscle damage.  My CPK level was 10,457.  That's right, my CPK count was 26 to 174 TIMES that of a healthy person.

      Dr. Odom referred me to a neurologist for further testing and mentioned I could possibly have Polymyositis or Muscular Dystrophy.  I don't think those words quite registered with me at the time.

        I honestly just thought my physical difficulties were do to being out of shape.  I assumed that it would be an easy fix.  I would just have to start working out at the gym a few times a week.  Never did I image what the next few years would bring.  Even when Dr. Odom said Polymyositis and Muscular Dystrophy did I realize how life altering those two diagnosis could be.  That was the naive 16 year old I was.  I always just assumed everything was fixable.  In the coming months I would slowly realize that not everything was fixable.  


  1. Some people still have to get referrals to get things paid, lots of us.... Be thankful, you obviously have insurance. Kind of rare here since you had a preexisting condition, especially in TN.

  2. I am blessed to have insurance. It just seems that with technology things seem to move faster with insurance now. I'm sure the unknown seemed to add to the wait back then too.

  3. Bliss - thanks for sharing your story. That must have been a tough, slowly unfolding reality for such a young woman of 16 - I applaud your strength and am so glad you are in a position of advocacy ! :) My best to you - now and always - Lisa in Virginia

  4. Thank you!! It is because of people like you that reach out to me that confirms I am doing the right thing by putting myself out there.

    1. Bliss, I have been anxiously awaiting on the second part of your story! Thank you so much for sharing! You are such an inspiration and I know that God is using your story to touch the lives of so many right now! Keep up the good work. If you get a chance, I am also sharing my story/testimony on (Daring2believe,again) If you get a chance, check it out! God is so good and so faithful! I am grateful that He has connected my to you and your story. God bless you!!!

    2. Daring2BelieveAgain,
      I am so sorry to be so far behind. This week I am getting back to the swing of things. Thanks for hanging in there with me. I just want everything to be perfect. I am learning to let that go.