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Sing a Song- Getting Vocal About RSD This New Year

Published on December 27, 2016 under Guest Blogger for RSDSA

RSD CRPS warrior Shannon takes time to sing her song to santa with dog Finian.By Guest Blogger Shannon Leidig

Everyone has a song to sing, with every song being our own stories. Shannon writes about her song, what it means to sing it, and why it is important to hear the songs of others, whether they have RSD / CRPS or not.

Oh my, time surely does fly – you know the old saying the older you get the quicker it goes? So true.  I can hardly believe that another year is almost done and gone and I can honestly say good riddance – get gone and soon!  While there have been many blessings there have been a heck of a lot of upside downs/inside outs craziness that make me just want to smack my head.  Here is hoping that this Christmas brings many wonderful blessings to you and yours and may 2017 be one of the best yet.

Growing up, I remember a song called “Sing, Sing a Song.” I loved it for its simplicity.  However, in that simplicity a powerful punch was packed – and says a lot!

 

“Sing, sing a song, sing out loud, sing out strong

Sing of good things, not bad, sing of happy, not sad

Sing, sing a song, make it simple to last your whole life long

Don’t worry that it’s not good enough for anyone else to hear

Just sing, sing a song”

 

When I was first diagnosed with RSD in 1990 ~ many moons ago ~ there was not much known about it at that time.  I did not know where to go, who to turn to for help – not much of anything.  We muddled through as best as we could, telling family, friends, and people in my life who were concerned.  As we all know, it gets old as we constantly hear “You look fine. There is NO way you can be in [that] much pain,” or “How can you work when you say your body is raging on fire?”  Um, hello! I am Shannon first, not RSD/CRPS.  I finally decided to keep quiet and fight the battle on my own with my family and those in my circle of friends who cared, as I was so tired of having to explain.  I figured as long as I could work and do what I needed to do to get through the day I would be okay.

(Also, back in the dark ages there was not the awareness for chronic pain as there is today – for which I am so thankful the word is getting out there). I finally decided to open up a bit more and see what would happen once I shared that I deal with chronic pain as RSD/CRPS was so foreign to people.  I knew I wanted to help make a difference and this is the year I wanted to start singing my song.

Color the World Orange opened the door for me to raise awareness locally and hopefully spread to a wider area.  I decided to write a letter to the editor of our local paper and little did I know the impact it would have.  I sent my letter in to the paper and it ran the same day as my most recent blog posted on RSDSA which was “Don’t Judge a Book By Its Cover.” I knew that day that things were going to move in a way to help others be aware of RSD and how we can help those who matter in our lives deal with it.   I came home one evening and logged into my Facebook page to see a friend request from a person I did not know. I thought: “What the heck?! I will accept.”  Later that evening, I received a message stating: “Thank you for writing that letter to the editor as I thought I was the only one dealing with RSD.” Now, I know someone else with this.  The words “Thank you as now I am not alone” really impacted me.  We started to communicate and we have become friends. Singing my song, even quietly. is helping someone else.

I also received another friend request on Facebook from another person who had read my letter.  As it turned out, this was a gal who I had volunteered with at our local hospital, and she also has RSD.  I am thinking the power of the words and the impact [of] our stories, whether we think of them as stories [or] our songs. This is our life and if we share and “sing our song,” we can make a difference.

My song, if my tune can help others, then I am thankful, as I do not want others to tred through life and go through the experiences I did when I was first diagnosed.  If I can help others realize that just because I am a pain patient does not mean I cannot do anything; we can do anything we want if we put our minds to it.  Yes, we may have to adapt and go through the river and through the woods to get there, but we can do it.  Will there be roadblocks? Of course! But, if we hang on to those in our lives who matter and care (and each other) we can get through it.  Yes, having RSD/CRPS is difficult and does it sure does suck! Do I have dark days? Plenty of them! But, if I can reach out to my family and friends, stretch out my hand, I know they will grab hold and pull me back up.  There will be many trying and difficult days, but I will not let it beat me. Let others know we are people first, not RSD and then “Oh by the way my name is Shannon.” Nope, it does not work that way!

We all have our own songs to sing. The tunes are different, as are the words, but we all sing.  Just as we listen to the radio or our iPhone and bebop to our music, every person we encounter sings a song each and every day.  I was recently at our team meeting/Christmas party and part of our icebreaker was to go around and share the one thing people may not know about us- a great accomplishment and then one thing we are thankful for.  I was reminded yet again that we all have our own songs and I was blown away by some of the lyrics of life and how our lyrics can shape and mold our lives.  It was time for a new member of our team to share and she shared how she is thankful that those from her church will be helping her family have Christmas as they lost their father.  I was deeply touched by her song and I though how brave [it was] of her to share her song with all of us, as we really did not know her. I then reached out to her after the meeting and thanked her for sharing.

Once again, I was reminded that if we sing our songs, no matter how loudly or quietly we sing them, whether they be pitch perfect or terribly off key, we can sing our songs proudly and share with others.

Christmas [and the holidays are] a season of caring which leads to sharing which is giving and then receiving.  We have moments in our lives when those we love have to care for us and help us, or we meet someone who may just need a simple smile just to help get them through the day.  Share your song, and remember:

 

“Sing, sing a song, sing out loud, sing out strong

Sing of good things, not bad, sing of happy, not sad

Sing, sing a song, make it simple to last your whole life long

Don’t worry that it’s not good enough for anyone else to hear

Just sing, sing a song”

Warm wishes to you and yours for a very Merry Christmas and may the new year bring you much joy, peace and happiness to last all throughout the New Year.  Share your song and sing it as loud as you want!