International Reflex Sympathetic Dystrophy Foundation©

"Dedicated To Helping RSD Patients Worldwide"

Eric M. Phillips

P.O. Box 474

North Dighton, Massachusetts 02764-0474 USA

Phone: 774-501-2808  Fax: 774-501-2808

E-mail: utopia33@prodigy.net

 

Office Hours

Monday through Friday

9:00 A.M. to 5:00 P.M. EST

(Please note our new mailing address and phone numbers)

 

Please view the following new topics: The Management of CRPS, Movement Disorders, Principles of Addiction, New Topics, Spread of CRPS, The Infusion Pump: Clinical Observation, Spine and the Autonomic Nervous System, Bone Scan and CRPS, CRPS and SCS, Dr.Ellen G. Wattay's Updated Manual for the Diagnosis and Treatment of RSD/CRPS I, Clinical Contribution To CRPS I, RSD Poems, RSD Stories, Clinical Trials: Lenalidomide in the Treatment of Complex Regional Pain Syndrome Type I, CRPS and Sympathectomy, The National Disease Research Interchange (NDRI), Next Step O&P, Stages of CRPS/RSD, and Thermography Abstract.

Home Background About RSD Stages of CRPS/RSD RSD Puzzles #1-146 Management of CRPS Spread of CRPS Movement Disorders Principles of Addiction The Infusion Pump Spine and ANS Bone Scan and CRPS CRPS and SCS Cryotherapy Venipuncture CRPS Thermography Abstract Thermography Part - I Thermography Part- II Nerve Block Abstract CRPS - Sympathectomy Microcirculation Clinical Contribution On-line RSD Survey Printable RSD Survey RSD References RSD and Pregnancy Social Security Ruling RSD and SSDI Clinical Trials Dental Referrals Photonic Stimulator RSD Medical Articles RSD Articles List RSD Article #1 RSD Article #2 RSD Article #3 RSD Article #4 RSD Article #5 RSD Article #6 RSD Article #7 RSD Article #8 RSD Article #9 RSD Article #10 RSD Article #11 RSD Article #12 RSD Article #13 RSD Article #14 RSD Article #15 RSD Article #16 RSD Article #17 Anatomy Sketches RSD Manual For P.T.'s Medical Journal Links In The News Support Group Info RSD Events Links Language Translator Updates E-mail Search RSD Poems RSD Stories RSD Tissue Research Next Step O&P RSD Info Request Form New Topics Todd Rundgren Thank You!

 

RSD Poems

 

This new section of our website will be dedicated to poems written by RSD patients and their families. So if you have a poem that you would like to share with everyone to read, please e-mail your poem to Utopia33@prodigy.net and I will post it for you.

Thanks!

Eric

This poem was written by Mrs. Jackie McCombs. She had written it in the memory of her husband Henry who suffered from RSD.

 

RSD? What does it mean?

It causes so much pain I would like to scream.

You wake in the morning and all the day thru.

Itís constant, constant pain and nothing you can do.

In later stagesÖthey say there is no cure.

We Pray they find one. Thatís for sure!

Itís hard to deal with all that goes on.

Being in pain from dusk Ďtil dawn.

Anger, depression, mood swings, I could go on and on.

Then some doctors think. Itís all a Con.

Drugs, drugs and more drugs Öyou must take.

Starting from the moment, we awake. No one really understands what we have.

Too bad thereís not a magic salve.

So to all of you, who know how I feel, The ones who KNOW the Pain is real.

Weíll stick together through thick and thin.

Hopefully someday in the end we will win.

Guess we just have to wait and see and pray they find a CURE for YOU and ME!

Itís not in our heads. The Pain is there.

Please Doc, show consideration, show YOU care.

Until thereís a cure, we all must cope.

So DOCTORSÖ.PLEASE LISTEN TO US, IT'S NOT FOR THE DOPE!!!!!

 

I hope you who read this know that I will keep you in my prayers. My Husband was a wonderful man who passed away Sept 15th 2001 from bladder cancer. I wrote this after visiting a doctor who acted like his pain was imaginary, I was so angry that I just put what I felt on paper. This is in Memory of Henry McCombs. My wonderful husband who was the greatest thing that ever happened to me. We have 3 sons who have also suffered because of this horrible disease. But they have all stood behind me and have stepped in to help their Mom. Take care all . GOD BLESS YOU.

If you would care to write to me please do. Please just put RSD in the subject box. jmccombs26@aol.com

I WOULD REALLY LIKE TO GIVE THANKS TO ERIC FOR THE WORK HE DOES AND FOR THE OPPORTUNITY TO HIM TO SHARE MY POEM ON HIS WEB SITE. THANK YOU ERIC. MAY GOD BLESS YOU AND KEEP YOU WELL!

Jackie McCombs

 

This poem was written by Heather Quinn. Heather is an RSD Patient.

 

Dear Family:

Iíve cut my losses and the ties; for this is the end of those of you that donít understand.


This pain and heartache that itís given to me is the path to the rest of my recovery.


There is nothing left to say or do, but take the next step.


Donít talk to me, call me or look my way.


Iím as invisible to you as you are to me everyday.

As the world turns, I suffer.


Suffering equals my darkness and despair.

 
No ending and no beginning.


There I am stuck in the middle.

Youíll never see my pain.


Youíll never see my suffering.


I feel like Iím dying.


I feel like there is no reason to breathe.


There is no reason to love you.


There is no reason to think of you.


There is no reason to act or react.


Why for all that brings is heartache.

The world continues to turn as I suffer in my darkness and despair.

I see no ending, no light, but a new beginning.


Iím in the middle.


Sadness, anger, betrayal, loneliness and emptiness are how I feel.


Pain, hurt and sorrow is how I deal.


Youíll never see my pain and suffering.


All dreams, plans and hopes are gone in the blink of an eye.


Now that Iím alone, youíll never see me cry.

Iím hurting so much and deep that I cannot sleep.


Lying there in bed, gazing into the air, wondering will I ever heal?


Free me, please free me from this pain.


Free me to know that I will never hurt again.


Free me to be myself and never lose site of that.


Iím important.


Me, me, and me, thatís all I want to see.


No one else matters to me, accept those that understand my disease.


To accomplish this, Iím forced to keep my heart under lock and key.

 

If you like you to contact Heather the author of this poem you can e-mail her at: hz712002@aol.com

This poem was written by T.L. Tobac.  T.L. is an RSD Patient.

 

ROLLER COASTER - RSD

Oh twisted roller coaster
I have been propelled
to live upon

destined to this
contorted fate
not of my own volition
nor deservedly

no fun ride
this roller coaster RSD

Reflex

attacking at will
deceiving my psyche
into thinking
though 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 my shiny prize...
remission

Sympathetic

chugging 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 it's clutches

comfort 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 at last?
this time on the
up side of the
Roller Coaster RSD

Reflex

sunny day
happy ride
pain subside
drugs are working
just for today
I anticipate a visit with
my former 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 at the wretched drop point

for that fleeting moment
I thought I held the prize
but alas my palm lay empty

for this ride RSD never ends

hope ever remaining
some shiny dangling object
whizzing by it with each lap
teasing me
well out of reach
passing it over and over
with each twist and spiral
of the Roller Coaster

God
if this be your will
that I am destined to ride
I know you will be at my side
and one day I pray
You will take me to the station.

T.L. Tobac
5/4/07

This poem was written by Darlene Brownell.  Darlene is an RSD Patient.


Who Am I


You canít see me, you canít hear me. I'm the one inside of you, making you go crazy. All the doctors you have seen, they still don't know me, that's funny to me. And itís been over 100 years. And they still canít find me, those tests they take and pictures, there just wasting there time. I told you before they wonít find me no matter how hard they try. Indeed I'm the one that makes you hurt all day long. I am the one responsible for your terrible burning pain. I love burning you with my flames, keep complaining no one hears you, no one cares. They canít see me they cant feel me. I'm the only one who knows what youíre feeling because your body belongs to me now, and I have the power to make your pain spread. So don't try to stop me, because you no what they will say, itís all in your head and how many pain meds have you taken today. Wow! There still saying that now, thatís insane. I will leave you with nothing, no family and friends. I will keep torturing each and ever day till the bitter end because people canít see your pain and that makes my day. Iím going to take my flames and burn you in the worse possible way, I enjoy those shooting pains I give you threw out the day. HA- HA don't you wish you were dead, because that's my intent. If your doctor keeps giving you those meds itís going to affect you and mess with your head. That's ok heís doing my job, the more suffering you have makes me want to stay. Iím not leaving so stop praying; wipe your tears this nightmare is just beginning. Yes your really are a wake, I find that quite funny you thought it was a dream, It sucks to be you since no one understands. So do me a favor and do yourself in. Ok, I will tell you who and what I am. My name is called RSD isn't that a nice name. It stands for Rapid Spreading Disease. So tell that to all the morons you see. And maybe one day they will try and stop me. Bye the way would you please stop changing my name.

 

If you like you to contact Darlene the author of this poem you can e-mail her at: darlenebrownell@yahoo.com

 

This poem was written by Cynthia Ward. Cynthia is an RSD Patient.

 

Iím Not Like You

© 2000   ģ By: Cynthia E. Ward

 

Iím not like you Ė you see;

I have a debilitating disorder

Called Reflex-Sympathetic-Dystrophy.

My days are precious and few;

If only I could do the things I used to do!

Although, Iím enthusiastic and optimistic my body is in constant pain;

Though I strive to find the best in me only fond memories remain.

Though each day is a struggle

I donít want to be classified as a casualty or a statistic

Because I think of myself as a survivor with a name.

Somewhere out there is a person like me-

Who is in constant pain or feels the same.

You are similar to me, but as of yet I donít know your name.

Although, I have a disability Ė I still have responsibilities.

Though Iím different I have needs just like you,

And I would like the opportunity to do the things you do.

Opportunities like being able to work and enjoy my leisure time;

Without total disregard,

Because even though I strive for excellence getting there is very hard.

Living with RSD is challenging everyday

So this is why I think the public

Should listen to what I have to say.

RSD is permanent damage to muscles bones and nerves;

Which drastically changes our lives.

We are special people who have had to endure unnecessary pain and strife.

There are no definite cures for RSD so we suffer everyday;

Hopefully doctors will understand and find a way

To end the pain so the best part of our lives will return;

So everyone educate yourselves so you can learn.

We will learn that everyone is valuable in their own special way;

Please listen to what I have to say!

I am a person with a heart, mind, and soul,

And Reflex-Sympathetic-Dystrophy.

If you give me the opportunity- I can be the best that I can be.

There will be many times which are very trying,

And even times when you feel like crying-

So itís best to concentrate on the things you can do instead of the things you canít

Or are unable to do, because this will get you through.

Iím not like you- you see, because Iím just me!

Though, I have a debilitating disorder called Reflex-Sympathetic-Dystrophy.

Remember, I want the opportunities and privileges to do the things you do.

Though, I look similar Ė

Iím not like you!

 

This poem was written by Christina Nowak. Christina is an RSD Patient.

Refuse to Sanction Defeat

You toss and turn

Clenching your eyes

You bite your lip

To hold back the cries.

However you lay,

There is no relief.

The aching pain

Leads you to grief.

You curl your fingers

To form a fist,

But they barely bend,

They seem to resist.

You curse and you pray.

The cold creeps in.

The totality of pain

Did not yet begin.

Like a slave to his master,

You bend at its will.

Food is forbidden,

You mustnít be still.

Fighting the battle

Each day and night,

Yet when people are near

You better act right.

Hold back the pain

Flash a fake smile

Pretend you are normal

At least for awhile

 

The material on the IRSDF Homepage and all its associated, linked or reference pages is for informational and education purposes. It is not meant to take the place of your physician. Before starting, changing, or stopping any treatments or medicines consult your physician.
Eric M. Phillips, and Associates will not be held liable for any damage or loss as a result of information provided on this page or associated documentation. Again, this WEBSITE is simply published as an information source and should not be used to treat or make judgments on RSD. All material owned by others, that is distributed or published on this website, disk media, facsimile or copied through electronic or photographic means has been done so with the permission of the owner or author. Any and all material published in error, will be immediately removed or corrected upon notification of such. The IRSDF organization title known as the "International Reflex Sympathetic Dystrophy Foundation" and all associated material on this website may not be copied, reproduced or quoted without expressed written permission from the owner;  Copyright  ©1996-
2014 Eric M. Phillips- Last Update 2/10/2014
 

 

 

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