My Story Polymyositis Part One

Now that I had a diagnosis of Polymyositis, my doctors had something to work towards--there were treatments available.  I was placed on 50 mg of prednisone a day and was to have lab work done every two weeks to check my CPK levels.  The goal was for the prednisone to decrease my CPK levels and then tapper me off the prednisone. 

My seventeenth birthday came and went during February of 1998 and my muscles seemed to grow weaker.  I was still having great difficulty rising from a standard height chair.  I would have to place my hands on the seat of the chair and push my body up because my legs alone were not strong enough.  I had to preplan my day in my head so I didn't encounter too many obstacles.  My high school had 4 or 5 steps out front and a sloped grassy lawn off to the side.  Instead of struggling with the steps, I would walk at an angle up the sloped side yard.  By doing this, I drew less attention to myself.  I still tried my hardest to fit in like a normal teenager even though inside I knew my life was anything but normal.

One day, I remember coming down the steps from my Ecology class.  As I was stepping off the very last step onto the first floor hallway, my knee gave out and I fell to the floor.  Books, papers, pens and pencils went everywhere.  I was wearing a jean skirt with tights and a white tank top with a beige cardigan that tied in a bow at top.  There I laid arms and legs everywhere all sprawled out on the floor; I was beyond embarrassed.  How could this be happening to me?  Thankfully, I was given a key to the elevator so I wouldn't have to struggle with the steps at school anymore and hopefully avoid any future falls.  

My lab work and my decreased strength showed that the prednisone was not helping.  Despite being on 50 mg of prednisone a day, my CPK count continued to stay around 10,000-11,000.  In March of 1998, I was bumped up to 70 mg of prednisone a day. 

In the meantime, my mother arranged for me to see a rheumatologist at Vanderbilt in Nashville during April 1998.   Dr. Nancy Olsen reviewed my medical files and decided that I need to add methotrexate (7.5 mg weekly) and folic acid (1mg daily) to my list of meds.  She also suggested that I have an MRI so we would have a baseline to be used for comparison to document the progression of the disease.

Like a good little patient, I immediately begin the new drug regimen that was suggested by Dr. Olsen. Surely my physical condition was about to starting getting better.  My life couldn't go on like this forever…..could it?

I had friends and family that were there for me but I very rarely shared my feelings with them.  I backed myself into a corner where I was all alone.  In my mind, how could anyone understand what I was going through when I didn't really understand it.   I promise this wasn't how I had envisioned my teenage years going.

(Below is a little extra information about the medical terms used….I didn't know what most of them meant at the time.)

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.

Folic acid is a water-soluble B vitamin and  is needed for the proper development of the human body. It is involved in producing the genetic material called DNA and in numerous other bodily functions. (Web MD)

Methotrexate was originally designed as a chemotherapy drug (in high doses), in low doses methotrexate is a generally safe and well tolerated drug in the treatment of certain autoimmune diseases.  The side affects are too long to list and range from diarrhea to death.  (Medline Plus and Wikipedia)

Magnetic resonance imaging (MRI) is a medical imaging technique used in radiology to investigate the anatomy and function of the body in both health and disease. MRI scanners use strong magnetic fields and radio waves to form images of the body. The technique is widely used in hospitals for medical diagnosis, staging of disease and for follow-up without exposure to ionizing radiation. (Wikipedia)

Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug.  It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)

Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement.  Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases.  Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's.  It's more common in blacks than in whites, and women are affected more often than men are.  Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)     

My Story The Beginning Part Five

The surgery day stress had brought up a lot of issues and feelings I hadn't thought about.  Worrying about the future wasn't something that I wanted to do.  I just wanted to be a normal teenage with no worries.  So that was what I made my week of recovery about, being a normal teenager.  I got to sleep in late, I had a huge fight with my stepmother, I hung out with friends that I didn't normally see because they went to a different school and I just tried to relax.

I realized as soon as the muscle biopsy results came in my life would change.  At that point, I would either have a diagnosis or the probing and testing would continue.  I knew if I had a diagnosis, then I would forever be 'labeled' and I didn't like the thoughts of that.  But I definitely was not enjoying all the tests the doctors were ordering either.  Really, I hoped I would wake up and have the last several months just be a dream.  Of course that didn't happen.

I only got three days of relaxing before Dr. Brackett called.  My results from the muscle biopsy were in from Dr. Odum.  It was time for another doctor's appointment.

On Friday, January 30, 1998 my parents and I were in Dr. Brackett's waiting room.  Dr. Brackett was a rheumatologist practicing with Arthritis Associates.  We were by far the most youthful group in the entire waiting room.  Most everyone had a head full of grey hair and some sort of assistance device to aid in their walking.  I remember feeling so out of place.  I was a 16 year old girl.  What was I doing in this waiting room?

Once I was called back, my parents and I waited for Dr. Brackett in a small exam room.  My parents had been divorced for a little over four years.  I was glad they were able to come together for me.  I know it had to be awkward for them to sit in that tiny room with me but I was so glad they were both there.  As a way to lighten the mood, my dad was checking out everything in the room.  He opened all the drawers, touched everything on the counter, and played with the instruments hanging on the wall.  I told him I didn't think we were allowed to mess with all that stuff (even though he was doing a great job distracting me).  My dad said that we were helping pay for it with our visit so he thought it was okay for us to touch everything.  I had to laugh at his reasoning.

When Dr. Brackett came in the room, the mood changed.  We all held our breath and waited for the results.  He reviewed with us that my EMG was consistent with myopathy of the upper and lower extremities, my most recent CPK levels were 12,000, and my muscle biopsy was consistent with inflammatory myopathy.   Dr. Brackett and Dr. Odum's impression was that I had Polymyositis.  I had no clue what that was but it didn't sound good.  Tears streamed down my face.  I didn't know what all this would mean for my life and my future.  

Dr. Brackett suggested we start with treatment immediately.  I was to take 50 mg of prednisone everyday.  I need to be on birth control and 1,200 mg of Caltrate-D.  I would return in one month.  Suddenly, everything was going so fast.  We had answers but didn't really know what they all meant.

By the time I left his office, my head was swimming.  Polymyositis and prednisone.  I knew nothing about those things but they were about to take over my life.  We were given pamphlets about each to read up on.  I just wanted to run and hide.  This couldn't possibly be happening to me.

(Below is a little extra info on prednisone and polymyositis….these terms were foreign to me at the time.)

Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug.  It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)

Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement.  Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases.  Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's.  It's more common in blacks than in whites, and women are affected more often than men are.  Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)      

Amanda Patterson Szidiropulosz Nominee #2

Amanda Patterson Szidiropulosz

I am so excited to announce my second nominee, Amanda Patterson Szidiropulosz.  Amanda was nominated almost instantly after I posted I would be featuring Tennesseans that also happen to use wheelchairs.  And I love that I have a personal connection with Amanda.  She and I both attended physical therapy at the Cleveland, Tennessee Benchmark Physical Therapy.   I think we can both say that not only did we receive the best treatment but also gained many dear friendships from our time at Benchmark.  

Physical therapist Jeannette (Beach) Davis nominated Amanda and has nothing but wonderful things to say about her.
     "What stands out about her is that when I think of Amanda I don't think of a woman with a disability.  She has never let her medical condition define her although she has lived with it all her life.  If you think about Amanda you think of a beautiful, young, vibrant married woman with a very busy schedule!  Running a household, fitting in vacations, time with her sweet husband, hosting parties, visiting with friends, full time teaching in a profession she loves, giving music lessons and going to school.  I think she is an amazing example to her school and private students who will never doubt the "ability" of a person who just happens to be in a wheelchair.  I guess I see Amanda's wheelchair as more of an accessory then a limitation; she gets around in a wheelchair, I wear glasses, neither defines us, they just make it easier for us to do the work God put us here to do."

Often in our day to day activities, we don't always tell someone what they mean to us or how they touch our lives.  I have reached out to several people close to Amanda so they could share a few words about Amanda and what she means to them.   

Amanda's therapist Dana Slack grew to become a dear friend and wanted to share a few words about Amanda.  
"When I think of Amanda, I do not think of her as someone with a disability. I think of her as someone who is intelligent, caring, independent, an amazing teacher, a hard worker, and a devoted friend. She is a true example of a strong woman who has not let a wheelchair stop her from anything. Amanda is an inspiration to everyone around her, especially the young lives she touches everyday. Her life does not revolve around her disability. She does not use her wheelchair as an excuse. It is merely her means of getting around while she is busy being a wife, teacher, daughter, sister, aunt, and friend."

Collectively, Amanda's mom (Sherry Patterson) and her two sisters (Carissa Benton and Melissa Young) wanted to share some of their thoughts on what an outstanding individual Amanda is.  
  "Amanda was two when she was diagnosed with Congenital Scoliosis and Spina Bifida.  However, neither she nor our parents would allow this diagnosis to shape her life.  Rather, Amanda became the type of person who turned her disabilities into abilities.  From leg braces, back braces, crutches, and now her wheelchair, Amanda has always persevered and inspired.

     Throughout her life, she has never allowed setbacks to cause her to give up on a dream.   She loved basketball, but was unable to play.  So, she contributed to the team by being a stat keeper.  She was able to participate in marching band thanks to the guidance of her mentor, Scott Lee.  Mr. Lee encouraged her to pursue her love of music by seeking her Music Education degree.  Amanda has since taught both high school marching and concert band and now teaches elementary music.    In her elementary music class, she has even taught her students that anyone can dance, even if you are in a wheelchair (or walking chair as her nephew calls it). 

     Amanda has provided numerous opportunities for her students to dream big.   Her elementary choir performs throughout the local community.   She takes them to Dollywood to compete against other choirs.   Her students were even invited to participate in a Disney workshop where they performed onstage at Walt Disney World.  

     Our family couldn’t be more proud of Amanda.  She works hard every day of her life, never gives up, and never complains.  If our society had more people like Amanda, America would be unstoppable."

And last but not least, a few words from Amanda's husband, Damian.

     "As for me, I'm not sure where to even start. Amanda is just an inspiration.  She has an unstoppable positive attitude, humor, grit and some serious organizational skills when it comes to children!  She was on crutches when we met and not long after that she had a surgery that left her confined to a wheelchair.  Actually, she was unable to even roll over in bed without help when she came home from the hospital.  Despite her condition, she managed to roll up her sleeves and work hard to get as mobile as she is today.  It took a while but she never complained and she is always a happy and vibrant person with a magnetic personality.  She's always laughing and has me in stitches. 

     I mentioned grit partly because she deals with bad spasticity that medicine can't always relieve, but also because of an experience she had at the hospital.  She was in the ICU and just got out of her second surgery.  She refused to take the morphine because she knew how addictive it can be and was afraid of adding that kind of complication to her life.  The nurse wound up having to press the pump for her!   

     Lastly, she not only teaches every child at Charleston Elementary school as a music teacher, but she directs a choir of over 50 students and teaches piano/voice out of our home.  I have a hard time keeping up!  Whenever I have a hard day I always think to myself "I need to stop being a wimp, Amanda could handle a day like this in her sleep!"

     She is one of a kind and a never ending source of joy and inspiration."

Amanda describes herself as caring, giving, dedicated, funny, thoughtful, and creative.   I can personally vouch for the creative part as I have seen some of her creations on Facebook.  If you see Amanda quickly rolling somewhere, it's probably because she has spotted a clown.  She really, really hates clowns.  Amanda shares that we just wrapped up her favorite part of the, Christmas.  She loves Christmas and has so many Christmas ornaments that she has to rotate them out from year to year.  (Since she's so creative, I bet she has made some of the ornaments herself.)    

Family is very important to Amanda.  She has been married for 8 years to Damian, 'the most wonderful husband on the planet'!  (Totally her words and not mine.)  Together, Damian and Amanda have two furry children.  Ella and Dexter are Maine Coon cats.  If you have never seen Maine Coons, they are BIG and probably eat as much as a small child.

Amanda grew up in Charleston, Tennessee and her parents still live there.  Amanda is the oldest of three girls and all three of them are teachers! Her middle sister Carissa is a librarian at Roy Waldron Elementary and her youngest sister Melissa is a Kindergarten teacher at Lavergne Lake Elementary.   Thanks to her sisters, Amanda is an aunt to three wonderful nephews.   She proudly states that she loves to spoil them rotten.  My guess is that Ben, Will, and Charlie love being spoiled by their Aunt Amanda!  Even though her sisters live hours away, they are still a very tight knit family.  

Education is very important to Amanda.  Once she graduated from Charleston High School in 1992, she was off to Middle Tennessee State University.  Amanda graduated in December of 1996 with a Bachelor in Music Education.  From there, she went on to receive her Masters in Technology in Teaching from Walden University in 2010.  Personally, I can't wait to call her DOCTOR one day!!  Amanda has completed her Doctorate in Teacher Leadership work through Walden University.  She is currently at the project phase, but decided to take some time off.  Amanda plans to finish her Doctorate in the near future.   

It is no surprise with Amanda's love for education that she is teacher.  Amanda is in her sixteenth year of teaching music.  She spent her first three years as a band director/music education teacher.  The last thirteen years Amanda has been a K-5 teacher/choir director.  Outside of the classroom, Amanda has a studio of private piano students.  

 In her spare time (and I don't really see how she has much of that), Amanda enjoys giving back to her community. She has done several community service projects with her school, such as; Operation Christmas Child, collecting food for Share Your Christmas, and distributing Christmas cards to the elderly during the Choir Christmas Tour.   Several years ago, Amanda partnered with her best friend's husband, who was serving in Iraq at the time, to bring joy to children over seas.  Amanda helped to collect over 400 pounds of stuffed animals and candy to send to the children in a village he (her best friend's husband) was patrolling in Iraq.  

As you can tell, Amanda works A LOT!!  When she's not working, Amanda loves to catch up on her favorite TV shows, read, write, and work on craft projects.  Amanda and her husband also love to go to music concerts.  She says one perk of being in a wheelchair is you get great concert seats (I have to agree with that…..take the perks where you can get them!).  I love that Amanda always looks at the positive things in life!

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 Amanda personally probably want to know why.  Why does Amanda 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.  

Amanda was born with Spina Bifida and Scoliosis.  Spina bifida is a developmental congenital disorder caused by the incomplete closing of the embryonic neutral tube.  Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open.  If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones.  Spina bifida is one of the most common birth defects with a worldwide incidence of about 1 in every 1,000 births.  Scoliosis is a medical condition in which a person's  spine is curved from side to side.  Although it is a complex three-dimensional deformity, on an x-ray, viewed from the rear, the spine of an individual with scoliosis can resemble as "S" or a "?", rather than a straight line.  (Wikipedia)  For most of Amanda's life she was mobile either with or without crutches. Nine years ago Amanda had a surgery to insert rods in her back to stabilize her spine. After that surgery she lost the use of her left leg, which resulted in her wheelchair use. 

Amanda says that one of her biggest challenges is being independent.  She depends on her husband for a lot of every day tasks.  Because Amanda has steel rods in her back, she cannot bend anywhere except her waist and this really hinders her mobility.  Amanda's current goal is to overcome some of these dependency issues and to be able to do more for herself.  I think independence is a common challenge for anyone with a disability.  I know I want to do as much as I can with as little help as I can get away with.  

Sometimes the general population has misconceptions about people who use wheelchairs.  Amanda says she wishes she could stick to just one misconception that people have but there are so many!  One thing that irritates her is when people sometimes assume that because you are physically challenged, you are mentally challenged as well.  Amanda has had people come up to her and speak loudly and very slowly, which she finds insulting.  Another misconception is that being in a wheelchair is fun.  People sometimes tend to not consider all the obstacles individuals in wheelchairs face.  The final misconception that bothers Amanda is that people assume that if you are in a wheelchair, you are on disability and do not work.  Amanda has a great education and goes to work everyday.  She loves her job and will continue to work until she can't work anymore.

I asked Amanda where she saw herself in 5 years.  Her response was that she would still be teaching children to love music.  Amanda also says that she will continue to show the children she teaches that there are no limits to what you can achieve in life!

I whole heartedly agree!!  It has been an honor to feature Amanda as a nominee.  Personally, I think everyone reading this should come support Amanda in the Ms Wheelchair Tennessee 2014 pageant.  Amanda is going to make a fabulous contestant!!

Amanda, thank you for being an amazing inspiration for all the children you teach.  

Back to My Story

     Part of my platform was to share my story about life with a disability.  I started by telling about my childhood and sharing pictures of my family.  I enjoyed looking back at my carefree days as a child and remembering the family unit I came from.  Next, I shared about when I first starting noticing problems.  I had a hard time climbing steps and walking long distances.  This lead to me sharing about several doctor's visits that began a series of tests and my first muscle biopsy.

     And then I stopped.  I completely quit sharing my story.  There have been countless people who have asked when the next blog post would be.  People are really interested in hearing my story and I stopped.  I just stopped telling it.  I would blame my busy schedule or come up with some other excuse as to why I hadn't written anymore.

     In the beginning, I think I really believed those excuses.  I just had too much going on or so I told myself.  As the weeks turned into months, I knew there was more to it.  The deeper I dug into my medical records, the harder it was to relive those years of my life.

     I am not an emotional person.  I don't like to cry.  While pouring over my medical records so I could provided the most detailed and accurate information for my blog, there would be tears streaming down my face.

     So I stopped.  I made excuses.  I put my medical files aside and said I was too busy to write blogs about my life with a disability.  When really, I didn't want to relive those hard moments in my life.  I didn't want to remember all the things that I used to be able to do and I can no longer do.

     I never realized all the emotional baggage I would have to unpack in order to share my story.  I thought it would be easy to tell.  I lived it, so how hard could it be to share it with others? Much harder than I ever imagined.

     One thing I am not is a quitter, so easy or not, I have a story to tell.  I have drawn people into my life story and I owe them more than just the beginning to that story.  I owe them the entire story.

     If you have been here since the beginning of my blog, thanks for hanging in.  If you have just started following my blog, thanks for coming.  I hope you take the time to look back to the beginning of my journey.

     I plan to continue and finish my story.  I hope you enjoy.  :-)