The Day BEFORE the Golf Tournament

The weekend of the golf tournament was crazy busy!!  I will relive it as quickly as possible.  

Friday, June 28, 2013

5:30 am Alarm goes off.  I am up and at it.  I have to be at the McDonald's on Ooltewah-Rinngold Road as a Local Celebrity to help raise funds for the Ronald McDonald House Day of Change.  Jeremy (my husband) takes me over in the van and drops me off.  He returns home to get his truck and heads to Knoxville to pick the signs and banner up for the golf tournament.  

7:00-10:00 am  I am at the McDonald's with the East Hamilton High School cheerleaders raising money.  We had a great time and were able to help a wonderful cause.  We raised twice as much as that location raised last year.  Woohoo!!  Michael (my brother) came back to pick me up.

10:20 am  We made a quick stop by my mom's for a potty break.  

10:45 am  Pulled in at Dr. Jim Holloway's office to pick up donated prizes for the golf tournament.  A free teeth whiten and toothbrushes and toothpaste for the goodie bags.

11:00 am  Stop by Tanglez 2 Toez to pick up a gift certificate from my hair dresser Tabitha Nabors.

11:15 am  Crossed the street to KG's Hair Salon to pick up 5 donations from Kathy.

11:30 am  Michael dropped me off at home.  Jeremy was back from Knoxville.  We gathered golf tournament items and scurried around the house doing last minute things.  

1:30 pm  Loaded both cats up in their carriers and dropped them off for a much needed hair cut.  

2:15 pm  Checked in at Sam's to pick up extra drinks (I now know I should have gotten Poweraide and snacks), plates, napkins, and plasticware for the tournament. 

2:45 pm  Loading the van and realize there is a screw in the back right tire.  It's low on air.  We really don't have time for this!!  

2:55 pm  Stop for gas and air for the tire.  

3:10 pm  We arrive at Goodyear on Highway 58, one of our hole sponsors.  Steve gets us right in.  There was no getting me out of the van, so I got to ride around back and sit in the bay while the tire ot patched.  

3:30 pm  It's a quick stop by Eagle Bluff to drop all of the goodies off and finalize some of the details.  

4:15 pm  Stop by Amigo's to move the dinner pick up for the tournament to 5:30 on Saturday instead of 6:00.

4:40 pm  Swing by the groomers to pick up the kitties from their day at the spa (hahahahaha!)

4:50 pm  Fill the roo cup up with a much needed coke icee.

5:00 pm  Drop a gun off to a friend because there is always time for that.  ;-)

5:15 pm  Arrive home.  Jeremy is off to the marina to pick up all the donated product out of my office.  He delivers it to the golf course.  

5:30-7:30 pm  Mamaw, Annabelle, and Nanny Glenda come to the house for pizza and goodie bag stuffing.

8:00 pm  Bedtime for Annabelle

8:00-9:00 pm  Making list and continuing to gather items for the golf tournament.  I felt like I was moving out of my house!

9:15 pm  Bath time.....Finally!!!

11:45 pm  I think I finally went to sleep.  

And this was the day BEFORE the big golf tournament!!!

 

My Story The Beginning Part Four

I was unable to locate the paperwork for the results of my EMG.  I am certain that they showed the electrodiagnostic evidence Dr. David Rankine was looking for because I was immediately scheduled for a muscle biopsy of my right quad.

At this point, I remember feeling like I was just going through the motions the doctors requested of me. I didn't real know what to expect.  I wondered if the muscle biopsy would be painful and how long my recover period would be.  I must admit I was excited about having a required week of off school.

The procedure was very straight forward.  Dr. Alan Odum was to preform an 'open biopsy'.  Muscle tissue would be removed through a small surgical incision in my right quad.  The muscle tissues would then be examined microscopically to confirm my medical diagnosis.

There is one memory that I still carry with me to this day.  I was at Memorial Hospital sitting across the desk from a lady in admissions that was checking me.  She was going over the standard information with me.  I was verifying my name, date of birth, address, and insurance information.  She asked what my religious denomination was.  I respond Baptist and asked why she needed that information.  She explained all the possible things that could go wrong during surgery.  One of those things being death.  If I were to die that is why they needed to know my religious denomination.

On January 27, 1998  sitting across the desk from the admissions lady was when it all became real for me.  There was something happening with my body that shouldn't be.  A doctor was going to have to cut into my flesh to confirm a diagnosis.  It was in those moments that I realized more exercise or a better diet was not going to fix what was going on inside my body.  This was serious, very serious.  

Even though I had been put to sleep and given pain medicine I knew that the normal, carefree girl that checked into the hospital would not be the same one checking out.  I now realized that regardless of my diagnosis, my friends and family would never completely understand what I was going through.  I wasn't even sure what would happen.  The reality slowly began to sink in.  As much as my family and friends would be around to support me, no one had any clue what all I would be going through.  No one would really understand.  

I was completely alone in this journey and alone is a scary place to be.

My Story The Beginning Part Three

The New Year of 1998 brought many new doctor's visits with it.  I started off at the Chattanooga Neurology Associates.  Dr. David Rankine saw me on January 9, 1998.

At this point, I was 16 years old and 8 months into my medical journey.  I had gotten progressively worse to the point that I had no exercise tolerance and I could not stand for long periods of time.  I could only manage steps one at a time.

During the physical examination, Dr. Rankine described me as a pleasant female in no apparent distress.  :-)  The motor portion of the examination revealed decreased bulk throughout my body.  My physical abilities tested between 4- and 5.  A manual muscle test is something that is frequently performed.  The scale runs from 0 to 5 with + and - along the way.  A 5 is considered to be normal muscle strength and is general assessed when the patient contracts the muscle and the test giver cannot 'break' the contraction. (If the patient straightens their knee and the test giver applies resistance below the knee but can't apply enough force to bend the knee.)  A 4 is when the patient can complete full range of motion and accept some but not maximal resistance from the test giver.  A 3 means the patient can move through full range of motion against gravity but is unable to hold against any resistance.  (The patient can straighten their knee all the way while sitting up right but is unable to hold it there when give resistance.)  A 2 is when the patient can move the joint through a full range of motion with gravity eliminated.  (The patient can bend/straighten their knee while lying on their side, patient is not lifting against gravity.)  A 1 is when the test giver can feel the patient's muscle contract but no actual movement occurs around the joint.  A 0 means there is no muscle contraction felt by the test giver when the patient tries to contract the muscle.

After a thorough examination, Dr. Rankine's clinical opinion was that I had polymyositis.  This conclusion was reached due to my elevated CPK count of over 10,000.

The next course of action was to recheck my CPK level, as well as, do an EMG to see if there was any  electrodiagnostic evidence.  Electromyography (EMG) is a technique for evaluating and recording the electrical activity produced by skeletal muscles.  An EMG is preformed using an instrument called an electromyography, to produce a record  called an electromyogram.  An electromyograph detects the electrical potential generated by the muscle cells when these cells are electrically or neurologically activated.  The signals can be analyzed to detect medical abnormalities, activation level, recruitment order, or to analyze the bio mechanics of human or animal movement.  (Wikipedia)  If there was electrodiagnostic evidence, I would be required to have a muscle biopsy to confirm a diagnosis of polymyositis.

I don't remember the exact date of the EMG.  All I remember is how PAINFUL the test was.  The best I can remember, needles were placed at different points all over my body.  It felt like there was some sort of electric shock that came through the needles.  I would like to think I am a pretty tough girl, but I was crying before the end of the EMG.  By far the EMG was the worst test I have had preformed on my body.

I still don't think I was really scared about my future at this point.  I was merely going through the motions as the doctors tried to give me a solid diagnosis.  I guess I was still thinking it might be an easy fix, like I needed to exercise more or eat different foods.  It wasn't going to turn into anything major.  There would be a pill I could take or something simple along those lines.  All the 'bad' stuff always happens to someone else.  Or so you think.

Dress Shopping

Dress Shopping on Tuesday, June 11, 2013

On Tuesday after my doctor's appointment, Michelle (my sister), Tommy, Carter (my two nephews), and I went dress shopping.  Let me tell you, the boys were so EXCITED to go dress shopping with me.  NOT!!!  I do have to say that they were really good sports and waited quietly and patiently.

After consulting with everyone on Facebook,  I decided that I should check out Fancy Fanny's in Red Bank.  I didn't even realize it was out there but came highly recommended from several of my friends.

Fancy Fanny's did not disappoint!!  There were dresses, dresses, and more dresses to choose from.  I found a couple that I fell in love with but sadly they weren't my size.  I have waited a bit too long to get a special order dress and I just don't see me losing 10 or 15 pounds before next month.

Michelle was such a sweetie as she helped me in and out of dress after dress.  I was a little bothered by the size of the dresses I was having to try on.  In my mind I am still that skinny girl I was back in high school but in the mirror there is a different girl looking back.  Don't get me wrong, I am totally in love with the girl I am now just wish I could get some good exercise in to lose some weight.  Michelle was able to say just the right thing to make me feel pretty.

I think I have found BOTH of the dresses I need.  I only bought one, the cocktail dress for Friday night's platform speeches.  But I put the other one (the evening gown) on hold.  I just want to check a couple more places to be sure it's THE ONE.

Now it's time to look for shoes and jewelry.  I can't wait!!  If shopping is always a part of prepping for a pageant, count me in!!

Sorry, no sneak pictures.  You will have to check back on July 19 and 20 for pictures.  

Perfect

I have another confession.  I am not perfect.  I am probably the furthest thing from perfect.  (Please don't tell my husband.)

I have not been doing my social media sharing as Ms Wheelchair Tennessee justice.  I feel like all my post, pictures, and blogs must be perfect before I can share them.   So I find myself just not sharing them.   

Today that stops.  I will post (probably more than you would like) all my activities.  Because that is what I said I would do.  Just realize that they won't all be perfect.  Some may be longer than others.  Some may come with pictures and some may not.  The point is to share.  And I will share....and it will be real.....not perfect.   

So from now on, look for my posts to be more like me....imperfect but enjoyable.  

Thanks for hanging with me.  :-)

Picnic Table

I saw this picture on Facebook and fell in love with the ideal of sitting with my family this summer at a picnic table.  

I posted the picture on Facebook on June 2.  I had a lot of people comment on it.  Mike Clementson (he helped build/frame our house) posted that he thought he could make one for me.  I told him I would like my 'hole' to be on the other side of the table because my joystick is on the right side of my chair and that would better for me.  

On June 8, after a full day of adaptive water skiing, I come home to this in my driveway. 

I was so excited!!  In less that a week, Mike built and delivered a picnic table to my house!!  He is such a sweetheart of a guy!!  

Thanks, Mike!!  I look forward to many picnics with my family this summer.  And I will feel like a part of the family on the correct side of the picnic table and not having to hang off the end.  (It's the little things in life that make all the difference.)

Adaptive Water Skiing-June 8,2013

SPorts, Arts, & Recreation of Chattanooga has several adaptive sports programs.  One of there big events every year is adaptive water skiing.  Debbie is in charge of running the SPARC adaptive water skiing event.  We spoke a few weeks back.  I was very excited to team up with her and participate in some activities with SPARC.

I really wanted to attend the water skiing event.  Back when I was more mobile, I loved to go out on the lake.  We would go tubing and kneeboarding every summer.  Even back in high school (when I was most active) I never could get up on skis.  Once those lake activities became too much I still enjoyed getting out on a Wave Runner.  It was good physical therapy for me and it wasn't like I was out there trying to jump waves and act crazy.

During my conversation with Debbie I realized just how much I missed going out on the lake.  I haven't been out on the lake in over two years.  We didn't think riding a Wave Runner would be a good ideal the year I was pregnant with Annabelle and last year we were too busy with Annabelle to think about the lake.  Even though I work at Island Cove Marina and see the lake and boats everyday, I put out of my mind going out on the lake.  My physical abilities have declined to the point that it would be pretty hard to drag me on or off a boat or Wave Runner.  The last thing I want is someone to hurt themselves helping me do something that I don't really have to do.

When Debbie said the water skiing clinic is always the third Saturday in July, I knew I wouldn't be making it out on the lake this year either.  July 20 is the third Saturday this year and that is the Ms Wheelchair America pageant.  I will be in Houston!!

I told Debbie I would be unable to make it because of the pageant.  Her response was that I could come to the training session.  Score!!  I was going to the lake after all.

Yesterday was the training session and let me tell you, I had a BLAST!!!  I was the first one to go out.  I kept hearing the term guinea pig being said aloud.  It was just a joke.  Everyone knew what they were doing.  (Well, I hoped they did!!)  All joking aside, this is a very safe activity.  I had so many different hands on me yesterday my husband should be jealous.  (Again, just kidding.)

I was wheeled down a ramp in a manual wheelchair.  With assistance, I floated out of the chair and over to the ski.  Before I could be placed in the ski, I had to roll completely over in the water.  The volunteers needed to see that I could get my face out of the water.  Once I passed that test, I was placed in a basket that was attached to a ski.  The ski was also attached to a out rigger.  This would help to keep the ski steady in the water.  There were probably 4-6 volunteers in the water helping place me in the ski.   (See, Mom, I told you they would take care of me!)

All I had to do was sit still (and try not to freeze).  There was a skier on either side of me.  In the boat there were at least four more volunteers: a boat driver, a watcher, a line releaser, and a photographer.  Behind us on either side there were the chasers: two wave runners with two volunteers on each.  Everyone had a job.  The watcher made sure I was doing ok.  The two side skiers talked to me and were right there incase we went down.  The line releaser would release the ski ropes if we went down.  The chasers were there for extra support incase we went down and had to do a deep water start.      

My first time out was AWESOME!!  I forgot about being cold and just enjoyed the ride and the water in my face.  What an unexplainable feeling to be out of my wheelchair and gliding across the water.  During my time on the lake, LGMD 2B or a wheelchair never once entered my mind.  I was just a girl skiing on the lake.  I don't think you fully realize the impact of a day like yesterday until after the fact when you can sit back a say I did that!  I really did that!!  Something I thought was left behind in a different life, I was able to do again!!

That wonderful indescribable feeling was all thanks to strangers, people I have never met before.  Volunteers, people who gave up their Saturday to give to others.  I think that means just as much or more to me than being able to do something I thought I would never do again.  Yesterday will play on repeat in my mind forever.

THANK YOU SO MUCH!!  To Debbie and all the volunteers at SPARC who help make dreams come true.

SPARC is a non-profit organization funded by donations and grants.  Please like their Facebook page and keep up with the wonderful things they do in Chattanooga.

Here are a few pictures from my iPhone.  Once I get the photographers pictures I will post more.

TJ Ellis Nominee #1

T.J. Ellis

I am thrilled to announce my very FIRST nominee, T.J. (Tamara) Ellis.  T.J. is not only my FIRST nominee but she was DOUBLE nominated!!  This young lady is someone I have know for years, but never realized just how truly outstanding she was.  Our families have crossed paths many times over the years.  

T.J. was first nominated by her aunt, Margaret Long.  I asked Margaret to share a few words about T.J.  

     T.J. Is my niece and she is an inspiration to me all the time.  She is a very loving caring person who would go out of her way to help others.  A few things about her.  She has a wonderful way with words.  She loves to write and is very talented in that area.  She hopes to be published some day.  She is a wonderful Christian and active in her church and other organizations. She is a great aunt to my grandchildren and they climb all over her wheel chair and she loves it.  We all love her so much.

T.J. was also nominated by a fellow high school classmate, Amanda Burkhart Newell.  Amanda shared the following about T.J. 

     I would like to nominate T.J. Ellis.  I graduated high school with her and she has always had such a contagious, happy spirit.  I keep up with her on Facebook and despite the challenges she has been given, she finds a way to stay positive.  She is very deserving of being honored for being such an inspiration to all.  

Since I know T.J.'s family personally, I reached out to a few of them to see if they would share a little about the positive impact T.J. has had on their lives.  T.J.'s mother Madeline Ellis was off course more than happy to talk about her fabulous daughter.  

     God blessed me 30 years ago with a beautiful daughter that was born with cerebral palsy. For the past 30 years TJ has brought so much joy to me and our entire family! I can’t imagine life without her! TJ has always had a caring heart for others and has always put others before herself! She has always had a very close relationship with Christ and we call her our prayer warrior. She is the one our entire family turns to for prayer request. 
     TJ has always been outgoing and friendly. She never meets a stranger and has always shown great character and determination in whatever she is involved with. TJ has taught me so much through the last 30 years and is my best friend! She has taught me to face difficulties head on in life, as she has done with her physical challenges. She encourages others and is always ready to help others in need. I am proud to call TJ my daughter!

T.J.'s cousin Kim Long Baucom wanted to share as well.  

     T. J. Ellis is thoughtful, caring and a great example of a Christian woman. Her caring heart lends her the innate ability understand the needs of others. T.J. is continually reaching out to those in need, whether it is through her actions, sincere prayers or words of comfort. She is a great source of encouragement and is an inspiration to me and to all who meet her. I am so thankful to know her both as my cousin and my friend.

T.J. describes herself as compassionate, funny, driven, and friendly.  She says she has a sense of humor and adds that she is flirtatious!  T.J. loves the beach and says her nickname is Teej.  

T.J. is a part of a very large family.  She lives at home with her mom and grandmother.  T.J. says that her mom is her hero.  She also has a younger brother who is very talented and she is so proud of him.

T.J. is a graduate of Chattanooga Central High School.  She also attended college from 2001-2003.  If T.J. went back to school, she would attend a Christian college to obtain a BA in Biblical Studies.  T.J. volunteers two days a week as a Client Advocate doing crisis intervention for those facing unplanned pregnancies at Choices Pregnancy Resource Center.  T.J. is currently training to become a certified pregnancy Life Coach.  Although she does not have any children of her own, she loves investing in the lives of children.  T.J. does addition work from home.  She also loves to speak at churches and inspires others through her devotional writing on her blog.  Please take the time to check out her blog, Writing for His Glory. 

There is one question that is always asked of individuals in wheelchairs.  Some people just can't help it.  After all it is human nature to be curious.  People that don't know T.J. personally probably want to know why.  Why does T.J. need to use a wheelchair?  Before I tell you, I would like to provide you with a little 'wheelchair etiquette'.  If you run across someone out and about that uses a wheelchair, please don't ask them 'What's wrong with you?'.  I know most all of you are thinking 'I would never do that'.  Well, let me tell you, you would be surprised at the number of people that think it is an okay question to ask.  I get it AT LEAST  once a week.  Let me assure you, there is nothing 'wrong' with someone that uses a wheelchair.  I promise we are exactlly the way God intended us to be.  

T.J. was born with Cerebral Palsy.  Cerebral Palsy (CP) is an umbrella term denoting a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.  CP is neither genetic nor a 'disease', and it is also understood that the vast majority of cases are congenital, coming at or about the time of birth, and/or are diagnosed at a very young age rather than during adolescence or adulthood.  Cerebral Palsy is caused by damage to the motor control centres of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.  The resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances os sensation, depth perception, and other sigh-based perceptual problems, communication ability; impairments can also be found in cognition.  (Wikipedia)

T.J. says that one of her biggest challenges is dealing with having to be physically dependent on others.  She adds that at times it can take an emotional toll, but she is richly blessed!  T.J. states that another challenge is to stay driven while setting realistic goals for her future. 

Sometimes the general public has misconceptions about people who use wheelchairs.  T.J. feels that people think that those in wheelchairs have it easy.  She says that some people think if a person is in a wheelchair, then if they would just try harder the obstacles in their path will just disappear.  Sometimes people assume people in wheelchairs are lazy or dumb, and T.J. is always trying to show people that she is neither of those things.    

I asked T.J. where she saw herself in 5 years.  Her response was that she would like to be more confident in her calling and she hopes to inspire others as she follows the path He has for her.  It is her desire to have a devotional book written and published, but most of all, T.J. wants to be closer to her God.   

It has been an honor to feature T.J. Ellis as my very first nominee.  I hope you all take the time to follow her blog and in five years purchase her published devotional book.  T.J. thank you for being an inspiration to all those you touch.