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ITP Inspirations
 Copyright,
Dana Lacy Chapman
February 10, 1999
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I T P Healing Quilt
Completed Oct. 1, 1998
72" X 31"I made this quilt as a way
to understand how ITP "works" and to process in
my mind having ITP. Making the quilt was a proactive
response to an unpredictable condition. Visualizing my
body in the purple flame helped me stay focused on
healing myself, while cooperating with more conventional
treatment.
The quilt represents a blood vessel. Platelets appear
as yellow stars. Anti-platelet antibodies are shown as
strings of embroidered triangles. When these attach to
the platelets, white cells (looking like Pac-Men) then
think they are intruders and destroy the platelets. When
enough platelets are destroyed, blood vessels leak,
causing bruises, tiny red spots called peticheae,
nosebleeds, internal bleeding, and other more serious
problems. The leakage is shown as streams of red escaping
on the bottom left.
Purple flame is widely used to symbolize rebirth,
renewal, or healing. My quilt shows the flame collecting
the antibodies and the spilt blood. I frequently
visualized myself within this flame. Indeed, the results
of my first CBC after I finished piecing it showed a jump
from 31,000 to 214,000! I have been above that ever
since!
Dana
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Immune
Thrombocytopenic Purpura
Shimon
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WRITING ABOUT MY ILLNESS
(Words are the most powerful drug used by
mankind. R. Kipling)
When I tell it like it is, it’s not;
Because the illness is me and I’m caught
In the web of remembrance groping the shock of it all.
Those old sensory feelings fly around in my brain
As I struggle to make sense of why I’m now lame;
But my mind, too, was shattered by the shock of it all.
Telling my story helps inhibitions to leap,
But research* on chronics says just talking is cheap
As right brain excites and Broca’s area goes limp.
Those traumatic memories must transduce into shape
Of organized content; and writing it takes
For deep attention from inner listener gone limp.
So I try now to write words that ring true
And a process begins that I always knew
Lay deep in my soul and wants to be heard.
By integrating my feelings into thoughts made clear
I re-define my experience, including the fear,
And a healing begins when I know I’ve been heard.
* Journal of AMA 281:1304-9
The
Platelet Waltz
- A True Story
You're very sick,
they said
You're blood is escaping
You're brain could be next
Listen to us, we know best
Take another
shot, they said
But I've lost my hair
My fingers are numb
Listen to us, we know best
Put your blood
through this machine
We'll clean it six times
But I fainted, almost didn't wake
Listen to us, we know best
Take this
medicine, they said
I can't think straight anymore
My friends don't know me
Listen to us, we know best
I've had enough
of the torture
What value is life, if lived in a stupor
Bald and fat and ugly and tired
Listen to me, I know best
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Why
are you eating that food, they said
Who gave you permission
For only brown rice and veggies
Listen to us, we know bestDon't take those herbs,
they said
There's no study, no science
Those people are quacks
Listen to us, we know best
Her hands have no
power
Animal totems no magic
Your aura tells nothing
Speaking to spirits, won't help you now
I'm feeling
better, I said
My spots disappeared
I can now walk up stairs
Did you hear me at all, give me a chance
Your blood counts
are normal
We don't understand
A spontaneous remission, a misdiagnosis
We'll listen to you, what do you know
Joan
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| ITP. Itty
bitty
Teeny weeny
Platelet things.
Jump out of blood as quick as they're put in
Gobbled up by who knows what
A big white cell I see
Thank heavens I'm not small enough for it to gobble
me!!
Jenny
Dealing with ITP
ITP is not a fun thing to live with
Sometimes when you least expect it
It hits you when you least expect it
then you wake up and realize it's not a dream
I've had ITP for a long time
I know how to live with ITP
You'd think no one cares
But when you turn around
There's a hug waiting for you
Never letting you go
missing out on fun stuff
not doing rough stuff
hoping to excel yourself to the fullest
only to find you're trapped fest
given by your family with love
Barry
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THE FISHING BOAT. Picture
this, if you can,
A fishing boat at sea.
Pulls behind a huge drag net
In it is you and me.
We are the fish it's after,
But we're not the only ones
The drag net catches more than us
It gets the "healthy" ones.
They're our relations and our friends
Who stick by us through this.
Low platelet counts are in our lives
Sisters, brothers, husbands, wives
Who will be the next one caught,
Nobody can tell.
It doesn't matter who it is
We know they'll go through hell
But because we have this board to see
Each other at a glance
There is the possibility that we
Will lead it a merry dance.
This strange affliction, ITP
Brings all of us together
Bonding, forming day by day
Cemented here forever
Science is our ally,
Our "greenie" if you like
Finding ways to cut that net
And let us out for life.
So let us join together
And make our own big clot
To stop the flow of platelets
And stop this bloody rot!!!
Jenny
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Defective immune systems
tangled with chronic fatigue syndromes
seeing through to the end
only to start again
hearts filled with gull and chasm
questions arose in her head
lying still in her bed
cold and shattered
before the dawn
waking up with her night shift on
more bruised and battered
than the night before
the night she swore
the feel of the gun
going off in her chest
that night was the longest
but now it was done
she never woke up to see the sun |
Children playing the streets
tearing down the bloody sheets
preparing for the wake
looking down at the crowded town
she's not going to make
this life like the last
not looking for the past
the loved one she left
mourning in wakeful glee
they didn't even stop to see
the birds in the nest
until now
when she took her fateful bow
and she cried and their laughing
because the know she is only napping
and she thought and she sighed
no more pain and disillusionment
until the dedicated the monument
in her name
and the money to the cure
with this they were sure
they could stop the game.Sarah (17)
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| ITP Doesn't Care It
doesn't care your age, color, or name
All it wants is you to play the game.
Platelets up, Platelets down
making your head spin around.
Fatigue, redspots and muscle cramps,
bloody noses, headaches too with
black and blue all over you.
Take a pill, lose a spleen
go through chemo; but, what's it mean.
Your on a little ride
and know you can't hide
because you've tried and tried
but ITP is still inside.
You try to survive
Who knows for how long
but for now you'll get along.
Cherie
bears@mi-web.com
Dedicated to my son, Matt
80 countThe mother of ITP,
Stoic and full of suffocated grace,
Pretends,
Pretends,
there is a safe place by holding him near.
250 count
An attachment so hard to break,
but I must pretend,
pretend,
through his suffering,
depression within his predisone face.
1500 count
My fears for his lifeless years, of his dreams,
the stoic mother is scared,
Pretend,
but
he may fall,
he may bleed.
100,000 count
A calm, a relief, his dreams appear,
strong, vibrant,
transcending past his stoic mother's arms,
pretending,
until the next descent.
Jim
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Half the Battle is
Won We solemnly observe the writings
As each poor out their hearts - their souls
And carefully we intervene
With the deepest of all compassion's felt
Hoping and discovering - others will do the same
We try to solve the unanswered questions
While gathering the talents for ourselves as well
To bring an end to this search that has taken so long.
Watching honesty explode amongst the pages
Tho sometimes bitter, or angry or momentarily selfish
We still grasp every word - every breath that sighs
And hold it tightly to our own bosoms
Giving and finding unconditional friendship
Knowing we are all 'one' in our travail.
How the tears flow from the matched sorrows
And cries of joy let loose from sharing
Even chuckles and laughter pervade from behind the silent
screen
And hundreds of arms reach out to embrace
Acknowledging the loneliness that was endured
The lost brothers - the lost sisters
To whom we did not know we had
Finally gathering in such sweet pleasure - at simply
being found.
Oh, the roller coaster ride continues - of life and
death each day
Overwhelming fears - knowing others cannot ever
understand
But bonds this little group with all our whispered pleas
Exchanging the 'for so long' unspoken needs
Making each day a little easier and maybe even brighter
We now persevere with gentle smiles - instead of ominous
dismay.
mo
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Switch to Witch
When I was leaking blood and gasping for air
I went in terror to pay someone to care
I was led to believe that tests would show
A path to recovery by someone who knows.
But why believe the doctor who was never in my skin?
And what was there about me that said I'm like him?
Desperate measures were applied as an antidote
But proof is in the pudding and when my taste choked
I needed to stop feeding at the trough of hope.
This chronic illness was my signal for necessary change.
For me, body retrofitting is a blind and foolish game.
Three useless "cures" by chemo as dips into hell
Began my fight for life to come up feeling well.
I now saw MD now as a witch doctor searing me to death
Until I learned inside there would be nothing left.
Tests say that nothing's changed but still
I stopped the whittling away at nothing to kill.
For me dying is boredom, living is action's thrill.
Lynn (lstoller@mcn.org)
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A Disclaimer
Chemo is a medical tool, somewhat akin to leeches,
Used when symptoms are unclear what the body teaches.
Curing is a fantasy when down this path you go.
And a big C got branded on me even though
They couldn’t pin the rap. I took the plunge
Three times, then stopped the living like a sponge.
Their talk’s mumbo-jumbo; only twenty percent survive.
I looked within, made changes and started to thrive.
Lynn (lstoller@mcn.org)
Waiting for the Miracle to Come
Leonard Cohen
Now baby let's get married
We've been alone too long.
Let's be alone together.
Let's see if we're that strong.
Yeah, let's do somethin' crazy.
Somethin' absolutely wrong.
While we're waitin' for the
miracle, the miracle to come.
in the style of: Lynn Stoller
Gropin' in the darkness, on a slow descent to hell...
Followin' every flicker to break this desperate spell;
With the lingerin' faint remembrance of once having gotten some
While I’m out there scoutin' for the miracle to come.
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MY DREAMS STILL RACE
website found waiting reply
will i live or will i die?
years of silence, years of pain,
when i see my pillow covered with a big blood stain.
track and field medals covered my wall,
now i gotta be careful of a simple fall.
"no more football ,no more hockey"
said my doctor as he looked in my eye.
with tears in my face i begged "why?"
"it's cause you have itp, can't you see?"
"i don't want this take it away!!"
"i'm sorry arnold, it's here to stay"
so now i run in my dreams,
my pen pals and wife my new football team!
i dream i can outrun itp,
my biggest race to be free.
sometimes i'm ok and felling wired,
other times my body bleeds and i feel tired.
my wife sees my blood on our bed
and wonders what runs through my head.
i whisper to her "it's okay" (she smiles)
i think to myself "let's have fun, this could be my last
day"
itp stole from me many a thing,
but not my dreams, my wife or her wedding ring!!
my heart is forever strong.
my heart sings a special song.
i love you Martha and all my far away friends.
hold me dear and i'll never whisper "the end".
If you read this bless you!! arnold-32-
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OUR CHRISTMAS WISH
It has been just about six months ago since we almost said
good-bye,
we stayed so close together, and everyday we cried.
We said how much we loved you and how much you would be missed,
we talked about the old times, and how those day's were bliss!
They told us it would be quick, in a matter of a few day's,
so we brought you home in a hospital bed, and there you lay.
Your body so weak and fragile, your tongue and mouth so sore,
your arms and legs so bruised. How could you take much more?
They told us not to feed you, that it would not be very long,
so there we sat and waited, hoping that they would be wrong!
The blood just kept on coming, oh how we wished it would stop,
we blotted your nose, and warmed your toes, and sat by you a lot.
Well the day's and nights went by, and soon we began to wonder,
maybe we could do something to make you a little stronger.
So we took the patch right off, and said good-bye to morphine,
we hoped this was the right thing to do,
and prayed we would see you in the morning.
Your head was much clearer, your eyes were sunny and bright,
your memory seemed better, your hunger was getting out of sight!
So, Dad gave you vitamins, Kim the pedialyte,
Dirk brought you Burger King, and Sharon stayed the night.
Frank called everyday, Kathy brought us dinner,
Michele stayed home from work, your grandkids called you a winner!
Your friends and family helped and prayed, they were all so great,
we cried and laughed as you got through,
Guess what? You're not at heavens gate!
We now believe in miracles, we know for sure they come true.
We have seen the light, and God was right for finding one for you!
So we take this time to appreciate the simple things in life,
don't sweat the small stuff Mom say's now,
and never give up the fight!!
Remember singing "Happy Day's Are Here Again"?
Well guess what? THEY ARE!!!
MERRY CHRISTMAS MOM
Your daughter, Sharon (frankcooperconstruction@hotmail.com)
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Why me??
I don’t deserve this,
I don’t want this
I didn’t ask for this.
So why me?
I stare at Dr. French
While he tells me that
There can’t be anymore
Catching. I start to cry.
Asking "why me? Why can’t I play?"
He answers "because Kristen, you have ITP."
So why me?
Now the pain is here
All the blood tests,
Visits to the hemo, headaches.
I shout, scream, hurt all in pain.
I feel like I’ve been stabbed.
All because of ITP.
But just one question
Why me??
By: Kirsten (pjh9@earthlink.net)
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My Son Shine
He's my son shine you see
You can't take him from me
He's a gift of God
And God's doesn't take things back
Nosebleeds as a child
No one noticed a thing
Hemorrhaged after surgery
No on noticed a thing
Now an adult at the prime of his life
You tell me he's sick
Why now, why my son shine
The platelets are low
He has ITP
We'll give him platelets
We'll give him steroids
None have helped
It's probably a spleenectomy he'll have
Then what I say
As they scratch their head
Father in heaven
Reach down today
Touch my son shine Lord
Heal him I pray
Brenda (bohpm@juno.com) |
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The ITP Dragon
Sitting in our hem/onc's office,
We've all seen the flier
About how cancer is weak.
Have we ever applied it to the huge dragon of ITP?
We've been stuck innumerable times
And all our veins are knotty.
But what about that sweet lady
Who knew the right way to stick
So it wouldn't hurt.
ITP is weak, we made a friend,
Now it is only the size of a small dinosaur.
And how many times have we lain
In those railed beds,
With plastic IV tubing everywhere?
But what about those wonderful nurses,
Who became our friends, confidantes, and cheerleaders?
ITP is weak, we've made many friends,
ITP is only the size of a komodo dragon
How many nosebleeds have we had,
Scaring our friends and family?
But look at the love they have given.
We know how much they care about us now.
Only those who truly care can stand by us through steroid rages!
ITP is weak, we are loved,
That big dinosaur? Ha. Only a garden lizard!
Amanda (age 18) amandasue35@hotmail.com
Alyssa I look into the mirror
and wonder who this person is
that stares back at me.
It surely isn't who I am.
And I wonder if thats how people see me
the way I look in the mirror
and what they feel
when they see this little kid.
It really isn't me.
What do the doctors see
when I lay on the table
and what do my teachers see
when I rest my head on the desk
as my energy drains.
I miss myself.
Will I ever come back to me?
-Alyssa |
Inspiration Through Prayer
THE
DOCTOR SAYS IT'S TIME
TO BRING MY BABY ON HIS WAY
HE NEEDS A LITTLE HELP
SO TOMORROW IS THE DAY
NURSES TAKE MY BLOOD
AND A MAN CUTS MY SKIN
TWENTY MINUTES BLEEDING
I WONDER WHEN IT ENDS
OFF TO SLEEP I GO
AS SCARED AS A CHILD
FOR I WILL BE A MOMMY
IN JUST A LITTLE WHILE
WHEN THE MORNING SUN
BRINGS LIGHT UPON MY EYES
THE DOCTOR COMES TO GREET ME
BUT TO MY SURPRISE
WE CAN'T HAVE THIS BABY
YOUR BLOOD JUST CAN'T CLOT
IF YOU HAVE HIM NOW
SOON YOUR LIFE WILL STOP
WE WILL SEND YOU TO A PLACE
THAT WILL TAKE GOOD CARE OF YOU
WE CAN'T KEEP YOU HERE
WE DON'T KNOW WHAT TO DO
WHEN I REACHED THE DOCTORS
I WAS SENT TO SEE
THEY WERE ALL THERE WAITING
TO TAKE A LOOK AT ME
THE STUCK ME WITH NEEDLES
I HAD A CENTRAL LINE
GOD MUST HAVE BEEN WITH ME
BECAUSE IM STILL A LIVE
MY WATER FINALLY BROKE
HE WAS ON THE WAY
THEY SAID YOU GET A LIFE
AND YOU LOSE ONE IN A DAY
IN THE MIST OF LABOR
I HEAVED BLOOD FROM MY MOUTH
AND I SEEN A SIGHT FROM HEAVEN
THAT HAD EASED ALL MY DOUBTS
I SAW A MAN WITH A FACE SO BRIGHT
PULLING A WAGON FIERY RED
I THOUGHT I'D ENTERED HEAVEN
I THOUGHT I WAS DEAD
WHEN MY JOURNEY WAS OVER
A NEW ONE JUST BEGINS
I WAS SENT ON MY WAY TO SURGERY
TO SEE HOW THIS ONE WOULD END
I COULDN'T CATCH MY BREATH
SO THEY HAD TO BREATH FOR ME
LORD GIVE ME STRENGTH
FOR THE THINGS MY FAMILY SEEN
DAYS HAD PAST
A MONTH ALMOST GONE
WHEN I WAS AWAKED
I WAS READY TO GO HOME
WE MUST WAIT A LITTLE LONGER
SO WE CAN CHECK YOUR COUNT
YOU NEED A LITTLE STRONGER
FOR WE CAN LET YOU OUT
MY BABY IS AT HOME WITHOUT ME
I KNOW HE NEEDS ME THERE
SO TO HELL WITH ITP
I'VE GOT HARDER THINGS TO BARE
YOUR COUNT IS 7000
THAT'S BETTER THAN BEFORE
WE HAVE NO REASON TO KEEP YOU
WE CANT DO ANYMORE
WE WILL SEE YOU MONDAY
WE HAVE A MEETING PLANNED
WE WILL CHECK YOUR BLOOD
AND...........................................
DO YOU HAVE SOMEONE TO HELP YOU
WITH YOUR BABY BOY
YOU WILL NEED SOMEBODY
THEY REPLIED VERY COY
NOW IT'S MONDAY MORNING
WHEN I ARRIVED I PLANNED TO STAY
CONGRATULATIONS YOUR COUNT
IS UP TO 90,000 TODAY
IT'S NOT WHAT WE EXPECTED
BUT ITS WHAT WE HAVE DREAMED
THANK GOD FOR YOUR LIFE
FOR HE IS THE HEALER OF ALL THINGS
HERE A YEAR AND HALF HAS PAST
AT 400,000 AS MY COUNT
I KNOW WHAT I CAN LIVE WITH
AND WHAT I CAN LIVE WITHOUT
STUPID OLD SPLEEN MADE ME SICK
AND MY LIFE WAS TURNED UP SIDE DOWN
SO THANKS TO GOD FOR EVERYTHING
AND THE GARMENT I TOUCHED AND THE POWER THAT HEALED.
FOR HE SHOWED ME FAITH WHEN MY HAND WAS WEAK , HE SHOWED ME MY SOUL
WHEN MY BODY WAS GONE. HE SHOWED ME HOME WHEN MY TIME COMES .HE SHOWED
ME LOVE AND GAVE ME BACK TO MY LIFE.
SHANNON Ssdd1952@aol.com |
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will i ever be the
same
as i lie in bed
wondering what comes next
i wonder,will i ever be the same
waiting in the doctors office
hoping for good blood tests
i wonder, will i ever be the same
getting a treatment injected through iv
dreading the side effects
i wonder, will i ever be the same
not being allowed to do the things i love
i get angry and sad
i wonder, will i ever be the same
missing school and getting behind
struggling to pass my classes
i wonder, will i ever be the same
looking into loved ones saddened eyes
as they watch me struggle
i wonder, will i ever be the same
praying to god to give me a miracle
or at least strength to keep going
i wonder, will i ever be the same
i don't know if i'll ever be the same
but i have help to keep going
and somehow have strength
thank you god and to my family and friends for helping thus far.
i only hope i can help you as much as you helped me to
everyone who has itp, keep going we can conquer this.
Sarah (17) h82blikeu@aol.com
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"ITP Interruptions"
New Year parties
Being 18
Lost all my weight
Living it up like a dream
Came home tired
Ready to rest
Being told I looked pale
Not looking my best
Decided to nap
Not as long as I did
Don't remember much after that
Except Mom screaming
"Oh my God she looks dead!"
I remember waking up
With all these needles in my arm
Doctors told me I had ITP
And that it could do serious harm
I didn't know much about my condition
Nor did I care to hear
They told me all my do's & don'ts
But it all went straight out each ear
I stayed in the hospital
For one week straight
They gave me Predisone
And made sure I ate
For 2yrs straight
I took all my pills
I lied to the Doctors
So I can still have my thrills
I signed up for the Army
Still knowing I was sick
I hid all my bruises
And prepared for the trip
I suffered all through basic
Having 3 periods a month
Trying to block out the pain
Convincing myself I was tough
My legs were covered with bruises
You couldn't see my skin
Nobody had any idea
How much pain I was in
The 3 months went by
I proved everyone wrong
I graduated basic
And remained to stay strong
Once I got home
All I would do was sleep
I couldn't do anything else
My body was too weak
Dad noticed my behavior
And took me back to the Doctor
He advised me not return to duty
And to stay in touch there after
As hard headed as I am
I reported back to AIT
Doing all the physical training
Not letting the DS's know about me
Half way through my training
I felt weaker by the day
I decided to go to sick call
To see what they'd have to say
The Doctor took my blood
Sure enough my platelets were low
The tears filled up my eyes
As he explained why I had to "go"
I was mad at myself
So I ignored all the facts
I said "I can still live my life"
So I pushed myself to the max
I would run when I was hurt
Going against what the doctor said
It would hurt when I breathed
So I ended up in the hospital again
I took the Doctors advice this time
And made it stay in my head
They told me I was lucky
That I didn't end up dead
I finished most of my training
Just to be sent home
But I knew God had a reason
Cuz I didn't suffer alone
Even though I thought
I went through hell for nothing
I ended up meeting my fiance
So God blessed me with something
He blessed me with life,
with my family & my love
So I send all my thanks
To the Lord up above
I'm now more careful
On how I live my life
Cause we only live once
And soon I'll be my Robert's wife
I want to be a mother
And have my children running around
I want to have a future
And I refuse to let myself down
I'm not yet done
With my war against ITP
But I know I'm not gonna lay
And let it get the best of me
I live each day to the fullest
With my family & friends
And I'll continue to do so
Til it's time for my life to end!!!!!!!
Esmeralda
ShortStiches82@aol.com |
If you would like to submit an ITP inspiration send it to pdsa@pdsa.org
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