Losing a Loved One

I'm Still a Gymnast
By: Colleen B., leader of Ohio Branch of RSD in Motion

I still consider myself one.
I never stopped being one.
One of those leotard wearing,
hair in a pony-tail,
grips on your blistered hands,
gymansts.

I've lost the flexibility,
the strength,
the power.

But I've not lost the spirit,
the will,
the drive,
the love
for gymnastics.

People ask, "what's your sport?"
and I answer, "gymnastics."
I don't say, "I'm on a break,"
or "I'm injured for a while."

But when I say
the word, "gymnastics,"
I don't say it as proudly
as I did two years ago
when I was sprinting down the runway,
stomping on the big blue spring board,
over an orange vaulting table,
and sticking the landing.

Ouch!
The pain, the tearing, the burning.
The destiny-crushing terrorist.
But, the cheers!
The screams.
The claps from
my teammates.
The smell of the coaches' new perfume,
when she hugs me for my
9.5 score.

I loved the high-fives
I got from my great vault.
I helped my team,
I stunned the crowd,
I made myself happy.

But why then does the pain
come after all this joy?
Before, I was stomping the board,
whipping over a high vaulting table.
Now, all I can do
is hope to God,
that no one will touch my right side,
that my leg won't flare-up in pain,
that I'll be able to walk.

It's like the terrorists came,
as I was flying through mid-air,
to a great school year,
to the next level in gymnastics,
to hanging out with friends,
to landing on the mat,
sticking the landing,
scoring a 9.5.

Feeling great about myself,
yet fearing
the pain,
fearing the landing,
fearing the bullets
firing up through my leg,
a boulder crushing my bones.
By God,
I will,
By God, I will
still be a gymnast.

I Believe...
By: Jennifer

Surrounding me a world of people
some of whom I know
Friends and family sometimes strangers
keeps me going everyday

We start out with racing hearts
but I believe we will achieve
The little things adds to
a better day
The finish line is near

I believe in you,
keeping that carefree smile
pain comes and goes,
like a birthmark and the long scar
Everyday is a chance to find a cure
Keep pumping those muscles
You will not end here

I believe in him,
the baby of the family life used to be a giant world of kindergarten
and always getting what you wanted
Now everything is different
Prove he's ready for responsibility
Staying focused on his goal
and he will be the king
Just a little effort
and he'll prove to be better than the best
Go, go, go there's his goal

I believe in her,
taking things as they come
and trying not to fret about the little things
She was sinking,
but now quickly floating to the surface
People move on
to a better place
It's okay
Keep talking when need be,
someone is always listening

We all believe in each other
Putting our best foot forward
and hoping for a better day.

The world change around us,
Has people changing too.
Give a hand to those in need
and I believe we will achieve.


Untitled 
By: Susi

Sleepless nights like many before
and I fear many to follow.
Staring at the ceiling dreaming of
the days I knew not of the pain.
When peaceful dreams came and took
me to places far from this one.
Now we are lucky for a few hours of
sleep ...or a nap between medications.

We scream, We yell, and not a soul
hears us. 
I say, "scream lauder!"

Body twisting and shaking, the tremors
taking me where sleep once stood.
We did not ask for this, not one of us...
yet we deal as best we can.

Medications pumped through our bodies
this side effects sometimes worse then
we want.
Yet we try and keep the faith.
We ask this of you...listen...hear our
pleas...the pain is so very real.

The doctors, workers comp adjustors, and
the general public.
Next time you tuck yourselves tight into
bed and the dreams come and take you to
magical places,
STOP for just a second and remember
those of us who can not sleep because
the MONTSTER known as RSD holds
us captive in its prison. 


Untitled
By: Linda

I wonder why the nights are the worst?
That is when I feel so alone.  Lost in my
own dark thoughts why the world sleeps.

I wander back to a long time ago...before
I ever heard of this horror called RSD.
My body burns in pain, my arms and legs
just ache.  I twist and turn trying to find a
space of my own. 

I view the street lights outside and know
there are so many sleeping in no pain. 
Waiting for the light of day to wake
up and start their day.  I hate to hear
their cars even start while they make their
way to an outside world that I never see.

My tears flow and soak my pillow...I don't fit
in that world anymore.  My soul feels so empty,
my heart so heavy.  The feeling I have I can not
hide.  I want my life back but it shall never be.  I
wonder if any of you are sleeping alone like me?

East coast...west coast it matters not.  We could
just talk but I know we can not.  So I take my
pillows and try to sleep...even a few hours will do.
Dear God help my heart...it is awful being alone. 
Another night of pain and tears.  Please watch over
those I love.  Even if they never understand...I know
you do....

My Pain
By: Anonymous

Dealing with this pain is a constant strain.
The monster hurts down deep
Sometimes I cry myself to sleep

Why do I keep fighting?
Giving up is so inviting
I feel the urge to yell
My life is going to hell

No one knows why
My pain is so high
Even the lightest touch
Can hurt me so much

The pain lasts all day and night
I'm tired of trying to fight
No relief...just constant pain
Until the sun comes up again

I've been chastised at work
And my doctor is a jerk
Now they think I'm crazy
Or maybe just lazy

I know my pain is real
This whole year seems surreal
Everyone says "just move on"
I will when the pain is gone


Roller coaster - RSD
By: T.L Tobac

Oh twisted roller coaster
I have been propelled
To live upon

Destined to this
Controted by fate
Not by my own volition
Nor deservedly

To fun ride
The roller coaster

RSD

Reflex

Attacking at will
Deceiving my psyche
Into thinking
Trough drug induced
Recovery may dwell upon the horizon
And that one day
We will stop at the station
Where I will depart
At last
To grab a shiny prize
Remission

Sympathetic

Chugging the chain
To the crest
The sound tortures my brain
As it abandons me
On the opposite side
To another day of pain

Dystrophy

Destined to remain
Forever strapped
To this wicked ride
Praying for
moments of peace

I am a prisoner
Of its clutches

Comfront may come
At any time
And just as quickly fade
To be replaced
By searing pain
Spreading
And flashes of insane heat
Damp sweat
Spasms
Leg burning
Arms aching

And yet it starts again
Could it be the last?
This time on the
Up side
Of the
Roller coaster - RSD

Reflex

Sunny day
Happy ride
Pain subside
Drugs working
Just for today
I anticipate a visit
From my formor self
(The one who doesn't ride the coaster)

Sympathetic

Hope wells up within
this is it (excitedly)
Could healing come at last?
Does the shiny prize (remission)
At last arrive into
my hand?

Dystrophy

Dash it all to hell
The chugging chain begins
Back to the wretched dropped point

For the fleeting moment
I thought I held the prize
But alas my palm is empty

For this ride RSD never ends

Hope never remaining
Some shiny remaining object
Whizzing by me with each lap
Teasing me
Well out of reach
Passing me over and over
With each twist and spiral
of the Roller Coaster

God if this be your will
That I am destine to ride
I know you will be by my side
And one day I pray
You will take me to the station


How Are You?
By" T.L Tobac

You know how "they" ask you
that everyday question
The one we all ask...
with simpilist intentions...

How are you?

Thats the one
It's said over and over
Just rolls off the tongue

No one really wants to know
But I must answer it true
Do anyone desire to hear
How we "actually" do?

Or do they look at us
And see nothing wrong?
Do they think we are fine
Just getting along?

If they only knew our day
And how one's begun...
It starts with the moment
We see the rising sun...

To the pill cabinet first
Where we silently retreat
For we cannot start our day
Without meds under our feet

Once we have swollowed
The dismal cost lot
We journey on into our day
With the little energy we've got

And if were lucky
Just many for the day...
The pills will kick in
And take the misery away...

Even if only for
Just moments in time
I can feel like my old self again
Sweet, pain free, sublime

But most of my days
It simply cannot be
Though I may look fine
The fire burns inside of me

It frankly will not matter
How many pills I swallow
They sadly cannot do their job
For the pain will cunningly follow

You tell me that the meds are bad
And I should get off all those pills...
Before I become some derelict addict
Drowning them all for cheap thrills

What choice do I have left?
To alone endure the pain?
Do you know some great alternative
That will cause it to abstain?

Do you know
What my daily wish might be...
To simply set it all aside...
To say *poof*, I'm better,
And leap off this freaking ride

So you think I'm cured...
Because I've gained back my walk
And when I talk of my pain
You believe it's all talk!

I promise you this my friend
It's not in my head!
When those words escape your lips
You cause my tears to shed

Oh "they" say "How are you?"...
But they don't really want to know
I can see it in their eyes
When I honestly answer them so

They've grown weary of my rambling
For I daily must seem to complain
There are many times I am too tired
To feel the need to explain

It has consumed who I once was
It was robbed myself of me
Every pain filled day
Is my bitter reminder
Of all that I never will be

So Please...

Do me a favor...
 
Just don't ask me...

How are you dear?

We both so clearly know
That you don't really want to hear

Then you'll need not give me more cliches
There'll be no need to steer clear...
Just don't ask me that question
For my answer must be sincere