Wednesday, May 29, 2013

You've Got Mail

I have a confession to make.  I LOVE getting mail. I always have.  I remember feeling so important as a child when there was something in our mailbox addressed to me.  It meant that somebody took time out of their busy day to think of ME!!

When I moved out of my dad's house years ago, I was so excited because ALL the mail in the mailbox was going to be MINE!!  I know, pretty cheesy, right?  I quickly learned that not all mail was fun.  The bills and junk mail quickly became my least favorite, but none the less I still loved mail.

I tell you this because the last couple of weeks have been really GREAT in the mail department for me.  I have received THREE awesome things (two weeks ago alone) pertaining to Ms Wheelchair Tennessee.

The first item was a large package from State Representative Gerald McCormick's office.  I thought it was strange because I had already received my resolution in the mail a few weeks ago.  I was thinking it might be a framed picture from my visit to the State House Floor.  I was wrong!!  Gerald had my resolution matted and framed!!!  It looks SOOO  good!!  I was planning on have one of my copies framed to hang in my home office.  And now I don't have to because Gerald took care of it for me!

The second piece of mail was a check from the Wolftever Creek Elementary School PTA.  Christy Penny, PTA President, told me after my school visit the PTA wanted to help with my entry fee/travel expenses to the Ms Wheelchair America Pageant.  I was flattered!!

The third piece of mail was also a check, this time from Esther Hwang.  Esther may be one of the sweetest individuals I have the pleasure of knowing.  She works at the Jain Foundation and is the Director of Patient Relations and Diagnostics.  It's an amazing feeling to know that people completely across the country are willing to help support my journey.

I am beyond blessed and thankful for the support I am receiving.  I can't say THANK YOU enough!!

I've got MAIL and I LOVE it!!  

Wednesday, May 15, 2013

News Channel 3 Mother's Day Interview

Check out the interview from News Channel 3 on Sunday, May 12, 2013

Ms Wheelchair Tennessee News Channel 3

Thanks so much Karilynn Galiotos for the great story!!

Thursday, May 9, 2013

US101 Dex and Mo Interview

Thank you US101!!!

Dex and Mo invited me to be a part of their afternoon show today. They were both so welcoming and genuinely willing to help me in anyway they could.

Mo shared my platform speech, blog, Go Fund Me page, and the Ms Wheelchair Tennessee website on the Dex and Mo blog.

If you missed the interview that aired around 4:15 pm this afternoon, Mo so graciously sent me a copy to share with everyone.

I hope you enjoy!!

Tuesday, May 7, 2013

Wolftever Creek Elementary School

I had a WONDERFUL time at Wolftever Creek Elementary School on Monday, April 29, 2013!!

     Shortly after my visit to Westview Elementary, a friend from high school reached out to me about visiting Wolftever Creek Elementary.  Christy Odum Penny is the PTA president and arranged for me to come and read to the WHOLE school!!  I attended this school back when it was called Ooltewah Intermediate.
     I hate to keep sounding like a broken record but I really do love visiting with all these children.  They really seem interested in learning more about me and why I need to use a wheelchair.  Or it could just be that they love any excuse to get out of class.  ;-)  Whatever it is, I would like to think I could be making a little difference.  When I hear back from the parents on my Facebook page about how their child came home talking about me, I know I must be doing something right.
     Christy made plans for me to read first to kindergarten and first grade, then to second and third grade, and finally to forth and fifth grade.  Since the groups were so large, we meet in the cafeteria.  I even got to use a microphone.  ;-)  Breaking the children into these groups worked great during the Q&A session.  I was able to answer their questions and explain things on a level they could understand.  With the older children, I was able to give more detailed information about my diagnosis.
     The highlight of my time with the children is during the Q&A session.  You can't get anything past kids.  LOL!!  One of the little boys from the first group asked me why my foot was purple.  I really wanted to tell him I had super powers but instead I told him the truth, it was because my blood flow was bad due to the fact that I sit in my wheelchair most of the day.
     I had two great questions from the oldest group of children.  The first question was if I would be in a wheelchair for the rest of my life.   I told them that because of the Jain Foundation I had high hopes I would NOT need a wheelchair for the rest of my life.  The Jain Foundation is doing an amazing thing in the science/research world by bringing scientist and researchers together to share data with the hopes of finding a cure/treatment sooner.  The second question was asked by a young lady.  She wanted to know what would be the first thing I would do if there was a treatment and I was cured.  WOW!!  Talk about being put on the spot.  I have often dreamed of being cured but never what my 'first' action would be.  I really had to stop and think.  My answer, of course, involved my daughter Annabelle.  If I was cured, the first thing I would want to do is to scoop Annabelle up and run outside.  To chase her around the yard and roll around in the grass with her.  She loves to be outside.  I can see it just as plain as day in my mind, can you?
     What a wonderful day!!  I am truly blessed to be able to share a little bit of my story with these children.  You never know when you will leave a lasting impression on a child.
     Later that evening, I sent Christy my email address so she could send the pictures she took to me.  To my surprise, Christy immediately responded and told me that the PTA at Wolftever Creek Elementary School wanted to donate $100.00 to go towards my entry fee to the Ms Wheelchair America pageant.  I was blown away!!  Thank you so much to Christy and the rest of the PTA!!

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.  

Thursday, May 2, 2013

My Story-The Beginning-Part One

The Beginning

            On February 26, 1981 at 10:46 a.m. a healthy baby girl was born to parents Jim and Sheila.  That brand new baby girl was none other than me!  
                                             Barbara Bliss
            I had what most would call a normal childhood.  I learned to ride a bike and kept the roads of my neighborhood hot.  I played indoor and outdoor soccer, but was most definitely not the star player. My siblings and I swam on the neighborhood swim team for several years. 
            Towards the end of my middle school days, I stopped participating in sports.  It just wasn’t my thing. I was never fabulous at sports and I was completely okay with that.  I was more interested in reading, hanging out with my friends, listening to music, and making collages of stuff you cut out of magazines.  If you are a child of the early 90’s I know you remember those collages! 

            My high school days were just as normal as my childhood--school, dates and boyfriends, acquiring my driver’s license and my first car, new friends, and finally a job!  I was beginning to focus on my future and what I wanted it to hold.  Life after high school seemed so appealing.  After all I would be grown up then, right?  
            During my junior year at age 16, I noticed I was having difficulty climbing the steps for my 6th period class.  I would have to hold on to the rail with one hand and support my thigh with the other hand.  Some days I felt like I had to pull myself up the stairs with the handrail. I just assumed I was out of shape and a little exercise would solve the problem.  So, I signed up to take a step aerobics class at school.
           The step aerobics class didn't solve the problems I was having, in fact, it brought them to the front and center of my life.  I was so weak that I couldn't even do the 'step' part of the step aerobics class.  I would just follow the workout routine without the step.  

           Walking a timed mile was a requirement of the step aerobics class.  When it took me over 12 minutes to walk my mile, my teacher pulled me aside.  He told me that he was concerned not only because it took me so long but because I was locking my knees in order to walk.  He suggested that I see an orthopedic doctor and have some x-rays done on my knees.  

            Little did I know then, but that was the beginning of a life altering journey.



Wednesday, May 1, 2013

Snowhill Elementary School Visit

I had a GREAT time at Snowhill Elementary School on Thursday, April 25, 2013!!!
Can you tell I am at the corner of Bliss Street?

My brother Michael is a first grade teacher at Snowhill.  He really wanted me to come visit with his children.  Michael, aka Mr. Sheets, started talking to his kids about me weeks ago.  He told them all about the Ms Wheelchair Tennessee pageant and that I was going to come for a visit.  

A few weeks before my visit, one of their in class activities was to color a picture and write a letter to me.  Michael, I mean Mr. Sheets, dropped the pictures by my house.  I have looked at these pictures and letters on multiple different occasions.  I just LOVE them!!  I have to share one of my favorites with you.
How cute is that?!?!

I was running a few minutes behind schedule because I had a stop that had to be made before my visit.  Mr. Sheets let one of the children call me to ask where I was at.  They really were excited about seeing me!!
This was on the board for me when I about feeling welcomed!!

Once I arrived, Mr. Sheets introduced me to his 'friends'.  He told them that I am married and have a little girl.  He told them I work and go to school.  And he told them a little about the Ms Wheelchair Tennessee pageant.  After the introduction, Mr. Sheets' 'friends' had a few questions for me.  They were curious about how my wheelchair worked, they wondered if  I was able to drive, and they were interested in the things I can do with Annabelle.

After the first mini Q&A session, it was to the rug for story time.  I read 'Susan Laughs' and 'A Rainbow of Friends'.  My new 'friends' really enjoyed my books.  Mr. Sheets came to sit in the floor next to me.  He read a few pages from 'A Very Special Critter'.  This story is about a rabbit that uses a wheelchair.   Mr. Sheets read it to his class before my visit so they would understand a little bit about someone who uses a wheelchair.

Mr. Sheets and his 'friends' thought 'A Very Special Critter' would be another good book for me to read when I visit other schools.  I was very happy about having another story to share with other children.

We had another brief Q&A session.  One little girl told me about her brother who has
Osteogenesis imperfecta (brittle bone disease).  I was so happy to share with her that one of the contestants that will be at the Ms Wheelchair America pageant also has Osteogenesis imperfecta.  I will have the pleasure of meeting her this summer in Houston, Texas.

It is such a blessing to visit these children and these schools.  Each visit assures me that changing my platform is the right decision.  Education should start with the children.  They are so opening to learning and are truly interested in how I am able to function.  I honestly believe that educating our youth about individuals with disabilities will result in a more compassionate society.