Saturday, March 22, 2014

I am going to be a......


That's right, you heard it here first.  

I am going to be a mommy a 65 pound, two year old bundle of fur. 

Meet Murphy!!!!

     Ramona Nichols from the Goodwill Assistance Dog Academy had a workshop at the Ms Wheelchair Tennessee pageant last year.  She brought service dog Jerry with her to demonstrate just how useful a service dog can be for individuals with disabilities.  

     Getting a service dog has been in the back of my mind since then.  I finally took the plunge and started the interview process for a service dog in November.  Ramona and Topper came to my house and for two hours we talked about all things service dog related.  

     I know my family, friends and even strangers don't mind helping me when I need it but it would be so nice to not have to ask for so much help.  The service dogs at Goodwill know 90 commands and can help with such tasks as turning lights on and off, retrieving dropped items off the floor, and opening and closing doors.  How awesome to be just a little more independent all thanks to a furry friend.  
(Personally, I think they know 91 commands because Ramona can make them 
ALL smile for a picture!!)

     These dogs are truly AMAZING!!!  They have the sweetest disposition and truly live to help others.  Many people with disabilities could benefit from having an assistance dog to aid them their daily life.  However, so few trained assistance dogs are available that only one percent of Americans who need assistance dogs currently having them.  

     To address this need, the Goodwill Assistance Dog Academy was created to train and to provide assistance dogs FREE OF CHARGE to Southeast Tennessee and Northwest Georgia residents who have physical disabilities.  It costs approximately $25,000 to train an assistance dog.  

     Once the interview process and applications have been filled out, the board at the Goodwill Assistance Dog Academy begins the placement process.  There are many aspects that are taken into consideration such as: living arrangements, children in the household, other pets in the household, how active you are with work/school, and what you will need the dog to help you with.  Your number on the waiting list doesn't matter because a true fit is needed not only for you but for the service dog as well.   

     There are currently three service dogs available for placement.  Topper, Danny, and Murphy are ready to start making a major difference in the lives of three special people.  

     Tuesday I received a phone call from Ramona.  She told me that the board had made their decision on the place of these three puppies.  They thought one of the dogs would be a perfect match for me.  I was beyond thrilled to hear this fabulous news and of course wanted to know which puppy I would now be mommy to.  Ramona said that Murphy seemed to be the best fit for me.  I must admit that I was not only super excited to have been selected but I was over the moon that Murphy was the dog for me.  

     Murphy is a very blonde, beautiful Golden Retriever.  He is very loving and at one of my visits to Goodwill, he came over and gently placed his little head in my lap.  Murphy is the diva of the three dogs and does not enjoy being out in the rain or getting dirty.  Perfect, because guess what?!?  Neither does his new mommy!!  I have been told that Murphy is so secure in his masculinity that is looking forward to all the pink accessories I will shower him with.  

     I am so honored to have been selected to be a recipient of a Goodwill Assistance Dog Academy dog.  Ramona and all the Goodwill volunteers put their heart and soul into training and loving these dogs.  And they are entrusting me with one of their babies!!  What a blessing!!

     I encourage you all to 'like' the Goodwill Assistance Dog Academy Facebook page.  Over the next couple of months Murphy will be visiting my house and place of work so we can start the bonding process.  In June I will go through a two week training course to learn all the commands and how to properly care for Murphy.  This journey will be documented on the Goodwill Assistance Dog Academy Facebook page.  I would love for you all to be apart of it with me.  

     I hope no one is too disappointed that I'm not pregnant.  That seemed to be everyone's favorite guess.  :-)   

My Biggest Cheerleader

     Throughout the past year as Ms Wheelchair Tennessee, my mom has been my biggest cheerleader.  She has always encouraged to dream big and shoot for the stars.  I am blessed to have her in my corner.

     As my year comes to a close today, she got me the sweetest Precious Moment.

Who's Going To Fill Your Shoes?

     But it's not the figurine that I will hold dear to my heart.  It is her kinds words that I will take forward with me as I start on my next journey.  

     Below is the heartfelt letter my mom wrote me.  If everyone was blessed to have a mother like mine, this world would be a much better place.

I love you Mom!!!  Thanks for being my biggest cheerleader!!

March 21, 2014
What an amazing year!!!
Seems like yesterday that we all gasp with joy and sobbed tears as you were crowned Ms. Wheelchair Tennessee…..then we watched as the fun began.

I have watched you grow with every public appearance you made.  Even on live TV you remained poised, calm and well spoken.  You have touched SO many lives.  From schoolchildren to newscasters to sports figures to 1,765 friends on FB.  Everyone has enjoyed following the year of Bliss.  You have lit up every room you have entered wearing your crown.  I personally don’t think all the glow came from the crown.

I have also watched proudly as you became an author.  Everyone loves reading your written words.  I certainly hope you continue with that area of expression.

Back in Houston, you won the hearts of all the girls from across the nation.  You made lifelong friends.  You also won the hearts of the judges.  That was truly a blessed event.  One I certainly will never forget.  First runner up Ms. Wheelchair America is something you should be so honored to say!  The competition was stiff but you made your family, friends and the entire state of Tennessee very proud!

Now as you move into your new role you will have the continued opportunity to touch lives with your new job and your new driving abilities.

I could not be more proud of you!  You are an inspiration to all who have been privileged to meet you and a true blessing to all of us who are lucky to love you.
I can’t wait to see what other incredible gifts you will both give and receive.  Maybe a segment on a talk show, maybe a spokesperson for MD or Goodwill or maybe even both.  With your helping hand and your kind heart you will be a joy to the handicapped individuals you will meet and serve with your new job.

No matter what you do, from Saturday moving forward, you have the power to touch many more lives.  I truly believe that is your mission from God and you are making Him very proud, too. 

Hold tight to all the lovely memories you have made this year.  Cherish them.  Hold tight to all the new friends you have added to your life this year.  Cherish them.  Hold tight to all those FB followers you have gathered this year.  Cherish each one of them, too.  We all can’t wait to see what God has in store for you next.  We will all stay tuned and closely follow another year of Bliss…

I know that it will be hard to let go of your title.  It will be hard for all of us.  We have all enjoyed it almost as much as you have.  I want you to know you will have a new title and a new role.  “ADVOCATE”.  You will begin this role with one year of excellent training and knowledge that you have earned thru the experience of being Ms. Wheelchair Tennessee.

You will always wear the crown in our family, always have and always will.

You have worn the Ms. Wheelchair Tennessee crown very well.  Be very, very proud of your accomplishments.  But……Who’s gonna fill your shoes!

I love you!   Mom

Sunday, March 16, 2014

My Story Polymyositis Part Five

     1999 was going to be the year I took control of my life again.  I wasn't going to let this physical condition rule my life any longer.  I was about to graduate from high school.  I wanted to go to college and start living my dreams.

     I had dreamed of going to Florida State but I knew that I probably wouldn't get to now and I had made peace with that.  There were still tons of colleges I could go to.  

     In January of 1999, my mother and I went to North Carolina for an appointment with Dr. Reed at Chapel Hill and Dr. Wilson at Great Smokies Medical Center.  Dr. Reed suggested monthly IVIg treatments.  Dr. Wilson was a holistic doctor and did multiple hair and blood labs.  He recommended electro acupuncture, a stool test and a diet program.  Sometimes holistic medicine is awesome and works for some people.  I was skeptical....I told my mom she had just taken me to a voodoo doctor.  But we were desperate and ultimately just wanted me to get better, no matter the means.  

     For my 18th birthday in February I was completely weaned from oral prednisone.  What a fabulous gift that was.  Even though we still weren't completely sure why I wasn't responding to any treatment, I felt like I was on the road to recovery.  My mind set was much better and I was actually regaining most of the strength I had lost.  I could even climb stairs again.

     I was still taking the imuran and methotrexate which caused me to have serve headaches.  I went to Dr. Brackett's office every week for my methotrexate shot.  My brother volunteered to learn how to give the shots to me so I wouldn't have to go to Dr. Brackett's every week.  It was a very sweet gesture, but I wasn't entirely convinced he didn't just want to poke me with a needle.

     By my high school graduation in May, I had completely weaned myself of all medication because I didn't feel as though it was making a positive difference.  My strength was continuing to improve and I was able to walk across the stage in a pair of high heels to accept my diploma.  I did have to duck out of line and have my brother carry me up the side stairs to walk the stage.  But none the less, I was with my graduating class.....something I didn't think would happen when my senior year started.
(The effects of the prednisone still weren't completely gone, even after 4 months.)

(I didn't have my senior pictures taken the summer before my senior year because my appearance was drastically altered due to all of the medicine.  Instead I waited until May of 1999.)  

Wednesday, March 12, 2014

My Story Polymyositis Part Four

     The fall and winter of 1998 brought more changes and adjustments to my medication.  With prednisone (100mg/day), methotrexate (6mg/week), and imuran (50mg/day) my CPK count had dropped from 12,000 to around 6,000 but the normal range was only 250.  More specialists around the country were consulted for alternate treatment options.

     When I started my homeschool program it really helped to lift some of the depression.  I was able to request my teacher and I choose a favorite from my middle school days, Kathy Ward Ratz.  She came to my house about once a week and it was always wonderful to see her.  I was trilled to have something to focus on besides my medical condition, even if it was spelling words and research papers.

     I also started a home health physical therapy program.  My doctors thought that this could help with some of the weakness I was having.  Mainly we worked on stretches and trying to walk with a walker.  My balance was terrible and I would hold on to the wall or furniture to keep from falling.  I was still unable to get out of a standard height chair.  A bar height stool was much easier for me because I could get my legs locked before standing up.

     Dr. Miller and Dr. Reiter of the Nation Institutes of Health and Dr. Pacman of Children's Hospital of Chicago Research Center suggested I try a different approach with steroids.  In November, I was admitted into the hospital for a 3 day stay and received IV Solu-Medrol 250 mg q-six hours for three doses.  (Methylprednisolone is typically used for its anti-inflammatory effects.)  Basically, I was given steroids through an IV with the hopes of bringing my CPK levels down quicker.  Before checking into the hospital, my CPK count was around 6,500.  On the second day in the hospital, it dropped to 3,100 and the date of discharge my CPK levels were 2,200.

     Finally some great news!!  My CPK levels were coming down.  Maybe things were going to start getting better.  Nope, not the case.   One week later my CPK levels were back to 5,200.  This wasn't the news I had hoped for.

     In December I had a bone density scan.  Another side effect of prednisone was bone damage.  I had been taking high doses for almost a year and there was concern for my bone health.  When my results were compared to a sampling of other 17 year old females, my spine and neck showed evidence of osteoporosis.  Great!!  Another fabulous side effect of prednisone.

     It was of my opinion that the high doses of oral prednisone were to blame for the bulk of my weakness and several other issues.  I was still open to other treatment options but I requested to be taken off the prednisone.  I couldn't stand what it was doing to my body and my mind.  Enough was enough, I felt like I was getting much worse and that wasn't the direction I wanted to go in.   Unfortunately, you can't just quit taking prednisone, you have to be weaned off of it.  Everything is always such a process but at least I felt like I was starting to take control of my life again.



Tuesday, March 11, 2014

My Story Polymyositis Part Three

     As summer turned to fall in 1998, I felt like I was in a fog.  Nothing made me happy anymore.  I was miserable and crying about it was almost a daily occurrence.

     I knew my doctors and my parents were doing the best they could with the information that they had.  And they were all desperately searching for better answers.

     My physical abilities had declined at such a rapid pace.  It was impossible for me to get off of a standard height toilet.  I had to have a potty chair.  We lived in a split level home.  Thankfully my room was downstairs and I could come straight in from the garage.  My grandfather build me a small ramp because I was unable to manage the one step to get into the house.  The down side was there wasn't a shower downstairs and I was no longer able to climb stairs.  My dad or my brother had to carry me upstairs so that I could bathe.  My weakness was so serve that I couldn't get my hands on top of my head to wash my hair.  I would have to take my left hand and place it under my right elbow and push my arm on top of my head.  I was barely able to walk across the house and had to use a manual wheelchair for my doctor appointments.

     With all the physical changes and obstacles there was no way I could attend my senior year of high school.  Piece by piece, this disease/disability/illness was taking my life away from me.  You go through your entire education longing to be the 'top dog'.  To roam the halls your of your high school knowing there is no one above you.  That you are on your way start your live your go to college.

     I never realized that last day of my junior year that I would never walk the halls of Ooltewah High School as a student again.  I never dreamed that I would need to be home schooled my senior year.  I never imagined I would have a need for potty chairs and wheelchairs.  I didn't realize how drastically my life would change in the matter of a few short months.

     It was really hard for me to focus on the good in my life.  I was too caught up in all the things I couldn't do.  I was never into school sports but I was devastated that I couldn't go to the homecoming football game.  I remember being curled up in a ball the night of the game crying my eyes out because of all the senior high school memories I was missing out on.

     Truth be told, if I didn't have this medical condition I probably wouldn't have been at the homecoming game anyway.  It seems sometimes we tend to focus on all the things we can't do when we should be focusing on all the fabulous things we can do.          

     I needed things to change and fast because I was slowly losing myself.  

Monday, March 10, 2014

My Story Polymyositis Part Two

     The summer of 1998 did not go the way I envisioned it.  Instead of beach trips and good times, I had doctor's appointments and medicine trays.  The variety of medicine I was on was making me worse.  Much worse.  And it came with its fair share of unpleasant side effects, which were treated with, that's right, MORE medicine.  I felt like I was 97 instead of 17 when I sat down each week to fill my medicine tray.  I was on so many different pills that I needed not just a medicine tray but one that you could pop each day of the week out to take with you.  You know the one that has four different compartments for morning, lunch, dinner, and bedtime?  Yeah, I needed that for all my medicine.

     The prednisone was take a toll on my body.  I was having a much harder time getting off the floor and out of chairs.  I could no longer preform these tasks with my legs alone, I had to push off with my hands.  In the few short months that I had been on prednisone, I had already gained 30 pounds (and it wouldn't stop there).  Dr. Brackett referred to it as cushingoid and I refereed to it as looking like a chipmunk.  I always had a very clear complexion but the prednisone took that away from me as well.  I had horrible acne, especially on my forehead.  I also had developed thrush in my mouth and throat.  Thrush occurs when a fungus called Candida overgrows in your mouth.  These side effects of prednisone caused me to have to take two additional medicines.  (Yay!!  NOT!!)

     Unfortunately, that wasn't the end of it.  Emotionally, I was on a roller coaster with no way off.  There weren't many highs on the ride but there were a ton of lows.  There were so many physical changes I was going through and they seemed to be all at once.  My physical strength was rapidly declining thanks to steroid induced myopathy.  My physical appearance had drastically changed.  I went from a cute little stick chick to an over weight acne covered sobbing mess.  There were many days that I looked in the mirror and could not even recognize the sad girl looking back at me.  My brown eyes were the only thing that remotely looked familiar to me and even they were different, they were so sad.  It was bad....really bad.  I was deeply depressed.  And guess what?!  There was another pill for that!    

      The combination of prednisone and methotrexate were not yielding the results my doctors had hoped.  So we added another medicine to the mix.  Mid summer I began taking 50 mg of Imuran. Imuran has several different uses such as: to prevent the rejection of a kidney transplant, to treat certain types of bowel conditions (Crohn's disease, ulcerative) and to treat sever rheumatoid arthritis.

      In July, I had a repeat muscle biopsy and MRI at Vanderbilt. The lack of improvement was baffling to my doctors and the question of whether or not I had an accurate diagnosis came up many times.  Dr. Brackett reached out to many other doctors across the eastern sea board for feed back on the proper treatment for me and if I had an accurate diagnosis.  The response to whether or not I had a proper diagnosis was always about the same.  It seemed all the doctors that looked at my muscle biopsy slides were always about 99% sure that I had polymyositis.  No one was ever 100% sure.

     So I continued on following the doctor's orders like a good little patient all the while the most fun part of my adolescences was passing me by and my senior year of high school was quickly approaching.