This page is dedicated
to all *RSD* sufferers and their families. I hope you enjoy the poems; and if ou have one
that you would like for me to add to this page, please send it to me by e-mail. Thanks.
I'd like to start this
page with a prayer to the greatest *Physician* of all. Jesus Christ:
Dear Jesus, Divine
Physician and Healer of the Sick, we turn to You in this time of illness. O dearest
Comforter of the Troubled, alleviate our worry and sorrow with Your gentle love, and grant
us the Grace and Strength to accept this burden. Dear God, we place our worries in Your
Hands. We place our Sick under Your care and humbly ask that You restore Your servant to
health again. Above all, grant us the Grace to acknowledge Your holy will and know that
whatsoever You do, You do it for the love of us.
Amen.
Is any sick among you?
Let him call for the elders of the church; and let them pray over him, anointing him with
oil in the name of our Lord.
And the prayer of
faith shall save the sick, and the Lord shall raise him up; and if he have committed sins,
they shall be forgiven him.
James 5:14, 15
The following essay was written by a
good friend who is also afflicted with RSD. Her words explain better than any I have ever
heard about the Pain that people afflicted with RSD go through 24/7. Please read it with
the knowledge that they all suffer this way.
Thank you Valerie, for allowing me to
place your essay here. Gentle hugs.
"The Pain"
In the hospital, late the first day when I was pharmaceutically paralyzed
from the waist down, I felt no pain. I cried. For the first time in over
eight months I felt joy; and I cried joyful tears while I laughed! I had
not realized that I could not remember not hurting. It felt so good. I
felt so good, giddy from the high of painlessness. I wanted to hold onto it
forever; but I was also afraid-- so afraid it would go away and the pain
would again be a part of my life, a part of me. I didn't mind that I could
not walk, or even feel my legs. I only cared about the absence of the pain;
and the hope that it would not return. I would have traded the pain for a
wheelchair that day. I guess I still would if I could.
The pain is back. It is worse. It has spread to both arms. I hurt. I cry
into my pillow. I cry while eating my dinner. I cry a lot. I cry often
and long; sobbing until my whole body aches. I try to remember the
painlessness and cannot. It is difficult to believe it was ever gone. It is
difficult to believe the pain will ever stop. I feel hopeless and helpless.
I feel frightened and so very, very alone. No one can feel the pain but I.
No one can understand the pain but I. It is my pain, and it cannot be seen
or touched or felt by anyone but me. Others express their concerns, and I
know they care, and I know they mean well. But there is always the doubt in
their voices, or worse, the blame.
I go through the day, and I manage the daily tasks of living-- walking,
sitting, climbing stairs, shopping, driving, carrying my stuff upstairs and
into the home I once loved. My beautiful home in the trees. The dream
house with the three levels and way more stairs than it used to have! or so
it seems.
The pain shadows every move I make; every thing I love. It comes between me
and my friends. It comes between me and my family. It makes my Dad feel
helpless; and because he is angry at the pain, he is sometimes angry with
me. It hurts him that he cannot help his daughter, fix her pain. It hurts
me so to see his helplessness. I sometimes try to avoid him. I sometimes
lie to him about the pain, and tell him it's not so bad, when it is.
The pain is so very, very bad, even at its quietest times. I think of it
like sound: sometimes it is screaming at me; other times it just whispers;
and the quietness of the pain gives me false hope so I have learned not to
trust its quiet-- it will soon scream again.
It is with me every step of every day, and it affects every aspect of my
life. Some times are worse than others; but no time is a good time. The
pain strips the fun out of living. Everything I do becomes a chore I must
endure. The nice things that happen are so overshadowed by the pain that
even the very neatest things that happen in my life are always, always
relative to the pain, and the pain always, always wins by settling itself in
the middle (at best) of the balance between joy and despair.
The pain is a part of me, invading my body like an invisible force that I
cannot combat because it is as insidious as it is invisible. I hate the
pain. I hate the part of me that allows the pain, but I will NOT let the
pain stop me. It may take the joy of living from me, but it cannot stop me
from trying to live.
I try so hard to believe it will not always be there. The Pain. I try to
believe they can fix me-- that they will stop the pain, obliterate the pain,
destroy the pain; and I pray they are able to do so before the pain destroys
me.
By V.P.F.
This first one is
especially meaningful to me and is a poem that a dear Internet sister wrote for me after I
told her what this disease does to me as a *Mother*. Thank you Judy,
from the deepest part of my soul!!! She took the words that I used to describe my pain and
turned it into this beautiful poem. Please go to her website and read some of her poetry.
*A Mothers
Heartbreak*
I feel the pain
everyday seeing my daughter hurting this way,
You see she is
fighting to live life each day.
With the pain of
Reflex Sympathetic Dystrophy,
And my heart is
breaking for my child not me.
She has gone from
being a Mom and a Wife,
To struggle each day
and to live a life,
That is filled with
more than a struggle to be,
Anything more than
what I now see.
My heart is breaking
for her grandchildren too,
For they don't
understand what she is going through.
If there were a way
for me to help her today,
I would leap at the
chance to help in any way.
She came to me with
tears in her eyes,
Feeling like a drug
addict in disguise.
How can I help the
child I've borne,
To not feel the pain
that awaits her each morn.
Please say a prayer to
God up above,
To stop the pain for
the child I LOVE.
Here is a very beautiful poem
from a dear friend who has RSD. It tells her story better than I Ever could.
Thank you Sue.
*The Pain I
live*
Ohhhh how I wish the pain would go and never return,
I hate this searing pain that goes to the bone.
Why won't it leave me alone,
It never goes, it always stays,
Like a fire that continues to burn.
Ohhhh how I want it to leave,
Or have someone just believe.
I'm not crazy, at least not yet,
The pain how it grows,
Deep down inside of me.
If it won't stop,
I'll lose it I bet.
Please make it stop,
Make it go away.
I just want
one pain-free day.
I guess I'm asking too much just to be set free,
Why won't it happen, I didn't do anything to thee.
Please just one happy day,
One sunny, beautiful pain-free day.
I don't want the fire,
That burns to the bone.
Ohhhhh how it hurts
when you're all alone.
No one to hold me, to love me,
And tell me
"You'll be alright, baby."
I hate the pain of RSD,
I hate it most passionately.
I sit here all alone in the dark,
There's no hope,
Not one little spark.
Ohhhh please go away,
I cry every night
And all through the day.
This pain is never ending,
It tears right through me
Twisting and turning,
Squeezing and burning.
This power of pain,
That is never unbending.
Please make it go away,
Please just for one whole day.
Please.....Ohhhhhhh please just for one day.
I can't take anymore, it hurts just too much.
To always be this way.
Sue Koche,©1998
