This is a poem that I wrote last night when I couldn't sleep due to high pain levels. I am trying to decide whether to give it to my grandparents, friends and other family members that don't understand what RSD is - I hope you all like it!!
Why wont you understand?
How can it be that just one day
Could change my life forever
Steadily growing, burning fire
Within me, leaving never
A life so full of friends
A family who'd unite
I hope they'd always be there
To help me win this fight
What started out so positive
Slowly fell apart
School and friends just disappeared
My family broke my heart
My pain is real and constant
Although others aren't so sure
Why should I have to prove to them
This monster has no cure
I sometimes wish I had the power
To let others take my place
To become me for just one day
And see the frustration on their face
Frustration that they cannot share
In normal daily life
Why wind and rain and sunshine
Cut through them like a knife
I wish my life was just like theirs
Without the need for help
Independance regained, my life restored
Without the need for help
Chronic pain is "secret"
A condition hid away
From those who chose not to look
One I choose not to display
My pain is real, forever here
A reminder of the cost
Of fate and events conspiring
Of my independance lost
Just because I don't look ill
Because i've come this far
Remember that it hurts to not
Ask me how things are
A simple word can mean so much
More than you'll ever know
To know you care, you're always there
Though I have still so far to go.
Sunday, 31 August 2008
Small Introduction
My name is Alison, I am 13 years old and I suffer from RSD (Reflex Sympathetic Dystrophy) in my left leg and right arm.
I developed RSD on the 20th March 2007 when I was just 12 years old after I fell down some steps and sprained my left ankle. I was finally diagnosed with RSD in July 2007 by a Pain Management Doctor after 4 long months of things getting worse and worse as each day went by. When I was diagnosed with RSD, my PM Doctor performed a Guanethidine nerve block in hope that it would at least reduce some of my pain but unfortunately I suffered from complications from the block and developed severe balance and co-ordination problems (whenever I tried to walk, my leg would just through itself out in front of me and I would have to have my mom take me almost everywhere!)
In September 2007, just 2 months after I was diagnosed with RSD, my PM Doctor prescribed me Amitriptyline as I wasn't sleeping but once again my body reacted to the med and I suffered from a side effect of blurred vision. I wanted to try and stay as independant as I possibly could, even though my vision was blurry and I couldn't walk or stand on my own without support, so I tried to get out of the bath tub on my own. Unfortunately whilst I was trying to get out of the bath tub, I knocked my right arm and within 2 hours my arm had begun to swell up really bad, become painful and lock into a fist. My mom called my PM Doctor and he asked me to come and see him the next day and I got the news I was dreading - my RSD had spread to my right arm!! Thankfully, my arm is a lot better than it was now although I still have some moderate pain.
At the moment I am trying my best to stay positive even though it is hard at times and I decided to create this blog so that I can express my feelings and so that people can keep up to date with how I am doing!!
I developed RSD on the 20th March 2007 when I was just 12 years old after I fell down some steps and sprained my left ankle. I was finally diagnosed with RSD in July 2007 by a Pain Management Doctor after 4 long months of things getting worse and worse as each day went by. When I was diagnosed with RSD, my PM Doctor performed a Guanethidine nerve block in hope that it would at least reduce some of my pain but unfortunately I suffered from complications from the block and developed severe balance and co-ordination problems (whenever I tried to walk, my leg would just through itself out in front of me and I would have to have my mom take me almost everywhere!)
In September 2007, just 2 months after I was diagnosed with RSD, my PM Doctor prescribed me Amitriptyline as I wasn't sleeping but once again my body reacted to the med and I suffered from a side effect of blurred vision. I wanted to try and stay as independant as I possibly could, even though my vision was blurry and I couldn't walk or stand on my own without support, so I tried to get out of the bath tub on my own. Unfortunately whilst I was trying to get out of the bath tub, I knocked my right arm and within 2 hours my arm had begun to swell up really bad, become painful and lock into a fist. My mom called my PM Doctor and he asked me to come and see him the next day and I got the news I was dreading - my RSD had spread to my right arm!! Thankfully, my arm is a lot better than it was now although I still have some moderate pain.
At the moment I am trying my best to stay positive even though it is hard at times and I decided to create this blog so that I can express my feelings and so that people can keep up to date with how I am doing!!
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