Friday, July 31, 2015

20 years and going strong

Wow!  I cannot believe it has been twenty years, two full decades, that I have been in this fight against RSD.  Do we say Happy Anniversay?  It doesn't  seem fitting to celebrate  this milestone, does it?  Oh but it does!  In those first few years I was a simple survivor grieving  for the life I lost.  Slowly I learned how to fight back and become the warrior I am today.  I no longer grieve the life that was or could have been because, let's face it, living with this disease has been more than half my life.  I don't  know if I will ever go into a full remission but I won't  give up.  I have come too far and have lived through too much!

 Twenty years is a long time.  Through these two decades I have had 100 epidural blocks, with 2 week long catheterizations, a spinal cord stimulator implant at age 21 with 6 revisions, and I have been on numerous  medications.
During the past twenty years I graduated high school and despite the fact that I had to medically withdrawal  from college I was able to work after my spinal cord stimulator surgery.  I met a wonderful man and together we built a beautiful family.  7 years ago I had to stop working because of my health and I was approved for Social Security Disability.  I also had to stop driving at the same time, I still have my license, this was a decision I made based on safety.

In the last twenty years I have witnessed a huge change in the medical industry.  Back when I was first diagnosed you couldn't  find any information  about Reflex Sympathetic Dystrophy which made it difficult  to be taken seriously about the level of pain I was in as people challenged the legitimacy of my health disorder!  The medical community was in the early learning  stages, a doctor confided to me that RSD was a two line paragraph  in his education and that the only way to learn was by finding a good doctor who was treating patients.  Normally  this wouldn't  inspire confidence but we were in a teaching hospital and I was basically  a kid!!!  Even my neuro stimulator has been receiving a constant  evolution.  I feel like each surgery they have something  new to introduce  to me!  Well, actually  I am always researching to stay on top of all the latest information  and advances being made.  After all it was only a year or two after my diagnosis that they made the name change to Complex Regional Pain Disorder and then shortly after that they named a type one and type two, all of this because it better defines the disorder for the medical community.  Remember the first name was not RSD but Causalgia.

Twenty years, two decades, is a long time to fight a major health issue.  I plan to keep up the fight for many more decades praying that one day we will find a cure!

Thursday, May 7, 2015

May 14 Apraxia Awareness Day

Ok first I am asking you to bear with me as I try not to cry.  After all this is my baby we are talking about!

Lucas is a beautiful, sweet, mischievous, extremely active little boy who loves the color pink and bad guys!  It is funny that I want to say "words cannot describe" because that is exactly what his Apraxia is all about, finding his words...his voice!  If you have ever had a child you know that shortly after their first birthday you begin looking forward to their babbling changing into Mama, Dada, and Baba.  It is one of those miraculous and sweet memories families share as they bet on which will be the first word.  Lucas did not babble.  He coo'd but those sweet constants never came through.  Lucas would also scream all day at me.  By 18 months I was worried and by 21 months I called my doctor who had me call Early Intervention Services to have him evaluated.  By 23 months old he began services and still had no words.  Lucas qualified for speech and developmental services.  Those beautiful women became my coaches.  

Fast forward to today!  Lucas is 5 years old!  He fights past his Apraxia to make sure he is understood.  If you don't understand him the first, second or third time he will use a variety of resources to help him.  He uses basic signs, gestures, or contextual clues.  My boy has a Warriors Spirit!  Giving Lucas his voice is a family effort.  Before Lucas had words we taught him sign language.  Gabriel would look through the book to learn new signs to teach to all of us.  He is an awesome big brother!  I remember the days that Leo and I would listen to Lucas, quietly counting out how many words he was able to string together...well, approximations of words but we didn't care because we were hearing our little boy talk!  

Lucas even loves hearing himself talk.  If you follow me on facebook you probably have seen one of the video's I post.  These video's have served to remind me just how far he has come.  Battling Apraxia means you aim for an inch not a mile.  Sometimes you can progress two inches just to fall back three.  That is when the video's come in handy.  

Apraxia Awareness is a way of life for us.  Leo and I don't excuse Lucas' speech to everyone by explaining that he has a speech disorder called Apraxia.  Why would we?  We are so proud of his accomplishments!  When we go out to eat Lucas will order his own drink, if he is not understood we simply tell the waiter what he wants.  We never discourage Lucas' speech attempts.  

May 14th is Apraxia Awareness Day.