All I Want is One Good Day
By Laura D.
All I want is one good day...
Just one day where nothing ails me.
Just one day that when I smile it's not through clenched teeth and I feel it tickle me to my toes.
Just one day where I don't have to wonder if my family secretly thinks I have rounded some new bend of symptoms they cannot see.
Just one day that I can throw caution to the wind; be released from the constant refrain of, "What's in it? from my soup to my soap".
Just one day where I won't have to endlessly plan for my trip based on rest stops, safe restaurants and smooth roads.
Just one day when I won't have to worry that a passionate embrace today will result in pain tomorrow.
Just one day when I will get to sleep, really sleep through the night, instead of marking the hours by the clock on my regular trips to the bath.
Just one day when I won't have to feel that everything, simply everything must be learned by trial and error; oh so much trial and so much error.
Just one day, just one single day -- is that too much to ask? -- when I will feel "a part of" again, and not apart from so much of what I took for granted before. If I had only known; if I had not squandered those days, all those days....why is it so hard to remember what it tasted like and felt like inside and out to just be, without what ails me?
Is that too much to ask? Just one day? Just one single day where nothing ails me?
* * * * *
Take Me Away
By Brook (beez)
Take me away… take me out, throw me away.
For if I stay I can’t bear much more, I can’t stand to live another day.
Don't touch me... don’t hug me... don’t kiss me.
For the pain is too much to bear when I feel you.
When you are hugged and touched by the covers at night I want to get up and run away...
Don't make me suffer anymore I just can't stand it anymore...
I want to run away from you but you wont let me.
You make me stay... you make me live in misery ....
Its getting worse... Every day I get worse... with each drink,
meal, touch I get worse.. I get more sore.
The sores surrounding me cry out to you to stop this pain...
I see you, I feel you crying, shaking in pain... afraid to show other how you feel... afraid to be alone. You stand in misery pushing yourself more and more each day.
You live to please others... to make them happy... you don’t want to cry out loud so you push it inside to me....
Why do you think your feet burn and your head throbs? I am calling out to you to take me out throw me away... I won’t cry... I won’t be sad I won't miss you... I will no longer be here and I will call out to you from afar....thank you.
Thank you for taking me away from the pain... I don’t want you to cry... I don’t want you to shake and hide inside yourself.
You are killing yourself more and more as you kill me and you don’t even see it.. take me out ..... toss me away and I will jump for joy. For I don’t know how much more I can take. I hear you pray to die each day... That’s no way to live.
Take me away… take me out, throw me away. I love you too much to stay; please this is all I ask of you... I have stayed by your side too long... Take away the pain that makes me scream and shake inside you.....
Please take me away....
* * * * *
Another Lonely Night
By Wendy C.
The rain falls steadily and the wind whips the tree branches
against the window pane, but it is otherwise very quiet and dark.
My family is asleep in their beds,
the dog snores and twitches his paws, chasing ghostly squirrels.
The pot sizzles on the stove
filled with a strange brew of bark and leaves,
a centuries-old cure still potent tonight.
I drink the tea, snuggle into my nest of blankets and quilts,
watch the Tonight Show with Leno, and wonder at this odd turn in my life.
In another life I was sleeping dreamlessly,
painlessly, spooned against my husband’s chest.
In another life I was sleeping with one ear
attuned to the cry of my young baby,
had energy enough to arise several times each night
to nurse him and return him with a warm full belly to his crib.
In another life I was the Mother I wanted to be and lived the life I wanted to live.
Now I spend my nights alone, with just enough pain
to keep me from falling asleep, and back into my other life.
* * * * *
Heart 2
By Melynn
About the art:
"Heart 2" is a work in acrylic mixed with sand with a polymer resin poured into the black areas to look like glass. It is one of the first completed projects in a "painting from the soul" class I was enrolled in last month. As part of a meditation beforehand, we set out with an intention to look within and paint what came into view. First time while approaching a canvas, I had no preconceived notion of what I was going to do. I usually paint realistic still lifes, so this was a very new experience for me, scary too, painting without any visuals to rely upon. By establishing a starting point with the simple form of a heart to concentrate on and explore, it helped make the process go a little easier. I wasn't really conscious of what I was doing until the painting was finished. As a friend put it, "The heart seems to be in turmoil if not torment and there is a gaping hole in it. Actually the whole painting looks like a wound." The hole did surprise me afterwards. And if one looks closely, you can see there were other holes too, mostly patched except for the large and small tear. I am not so bold to say my heart is perfectly healed. Mostly I'm doing well, but my illness still takes every opportunity to kick the hope right out of me. I think what trips me up the most is somewhere deep I haven't cleared a doomsday sort of attitude that I will never be well. I do remind myself I have things to look forward to and that each day I gain more knowledge of what I need to do to get better. When I look back to where I was 9 years ago, I am amazed at how far I've come. So, instead of a hole, I prefer to view it as a window...probably why I decided to add resin in the end.
* * * * *
Courageous Face - from the sister of an IC sufferer
By Kate
When I see acquaintances of old
and friends from the past
I tell them she’s well.
I boast about her accomplishments,
Her prominent career.
When friends ask for guidance
And advice to keep on,
I tell them of her
and her struggles with pain.
I talk of her long working hours
Her brave façade,
Of a force that drives her
In ways that I lack.
I relate a memory of her silent tears,
On the phone with a client one day
Never wavering from utmost professionalism,
Never revealing her quiet suffering.
And I say don’t give up
To my friends and myself
Learn from her courage
Learn from her pain.
Each day I struggle to fight my demons self-made
While each day she faces real pain with true strength
And always, unfalteringly, so outwardly unafraid.
I wish I could reach her in her world so alone
If only I’d realized what was until now unknown.
* * * * *
Hope
By Laura D.
You have no choice; this is your cage; your rage; your suffering.
They say you make your bed and you lie in it; I did not make this, I did not.
Hear me screaming, locked in my iron cage; my rage; my suffering.
I did not make this, I did not.
I could never wake on each day and say, where is the suffering?
It is here as if I have always known it. It is my bed and I lie in it.
But still there is the tiny hope caught tight in Pandora’s Box that I might
start anew, start once more with eyes of innocence and the heart of a child.
Start to find a new way to make it through each day where rage is like a river that runs far from me; where suffering is like a flower that unfurls to feel the sun upon its petals; that grows to reach the light.
I want my bed to be a bed of flowers; my cage to be your warm arms to keep me safe.
I want to stand in that light and feel its warmth; step out of my suffering and be free.
* * * * *
Self-Portrait
By Melynn
About the art:
"Self Portrait" is a quick sketch from my journal in 1998, done a little more than a year after I got IC. Glad to say most of the rage has passed now. I have often thought one of the reasons I developed IC was because I
was a person who held everything in, the bladder being the perfect metaphor for the "holding tank of the body", and learning to express myself, both verbally and artistically has been a huge part of the key to my healing.
* * * * *
A Mother’s IC Lament
By Janie Miranda (Jane A.)
Not so long ago, I walked the shop-lined streets of Shamian Island and smelled the sweet breath of the child who had become my own. She clung to me in fear and desperation but I was strong.
No, I was not a young new mother. Years had etched the lines upon my face. Time had taught me patience but had also given grace. And I was strong.
How quickly passed those toddler years. How quickly came my pain. How sad the knowledge for my child I might not be strong again.
So cruel this thief, so vicious, inhumane - such precious moments this heartless bandit steals, but I have faith, for my child and for myself, I'll be strong again.
* * * * *
Impenitent, This Pain
By Janie Miranda (Jane A.)
About the art: Original graphic art created in Poser and Paint Shop Pro.
* * * * *
The Way He Says I Love You
By Wendy C.
Long ago, it used to be his walking into a room was seduction enough,
And if he dared to pass me by without a touch or whispered endearment,
I saw it as a slight, a signal that things weren’t right between us.
In those first years, we were drawn together like magnets, our poles aligned.
Now, these many years later, I see with changed eyes all the ways he says “I
love you”.
When he leaves the shade down, although I know he prefers it up,
The way he lets me sleep when he knows I am very tired,
The whispered “hush” behind the bedroom door, asking the boys to keep quiet.
The way he tip-toes in to grab his shirt and take it to the laundry room to iron.
Sometimes I sense him standing by the bed, looking at me,
And I know that given the slightest encouragement,
He will put off going to work for a few minutes, and climb back in with me.
But I am so tired, and breath quietly, drifting in between sleep and life,
And the moment passes. When I wake, often he is already gone,
Off to earn our living, another act of love.
* * * * *
The Faith of the Body
By Marguerite Bouvard
Excerpted from the book The Body's Burning Fields (available on Amazon).
If you cannot fly sometimes it is enough
to sway like the rippling
silk of the ocean swishing
and turning in its vastness
yesterday the wind tore it
to shreds gulls
teetered and shreiked their shadows
hurtling over the sand yesterday
you didn't know if it would ever
end the wind pulling you by the roots
your body twistin in its jaws
Now you rise up within yourself
as if testing the frame of a frail
house at this late hour you begin
again as you have always done
it is enough to watch
the ocean riding its shoals
soothed by invisible hands
today could be a holy word
if you are able to utter it
sometimes it is a way of flying
* * * * *
Following is a poetic email from my IC friend Marsha that prompted me to write the poems "The Colors of My Pain" and "From Shaken Soul onto Deaf Ears" below.
"It seems to be a real stumbling block for me and that is that no one understands our pain. It seems people relate to cancer or other diseases, but for some reason, when you say 'bladder pain' or 'urethral pain' or worst of all 'clitoral pain', you just get a blank stare and things said like, 'you should be like (insert name), she has pain, but you'd never know, she just pushes through it with a smile'. Sometimes, I just can't take any more of it. Anyway, food for thought: I wish God had made pain be a color that appeared, a tune that was played or that we could touch each other and transfer the pain, then they'd see." - Marsha
The Colors of My Pain - for Marsha
By Laura D.
If I could paint you my pain I’d draw a night black as ink, lonely as the blackest soul.
If I could paint you my pain I’d wash the world in red, red as the blood from a weeping wound.
If I could paint you my pain I’d use a wash of white with lines sharp as glass cutting into me.
My art would be alive, pulsing and changing with the beat of my pain…complex and layered
never reaching the endless bottom of its agony.
My pain is an art of stained glass – you see the beauty looking into my face but unlike the
glass you cannot hold me fragile to the light to see my suffering.
I am too deep for that although I quiver like the paintbrush poised above the canvas, ready to
paint out my soul.
If I could paint you my pain, would you see? Would you truly see me?
Would you see the colors of my soul, my agony, my grief?
Perhaps held in so long its cold brightness would blind you.
I am willing to paint for you, to share my soul…are you ready to see?
Are you ready to see me?
* * * * *
SHE
By Marguerite Bouvard
Excerpted from the book The Body's Burning Fields (available on Amazon).
She looks back at me
from the mirror, paints
dark circles beneath my eyes,
brushes my skin with chalk.
She extinguishes the spark
in my glance, assaults me
in mid-air when I spring
through days, stripping me
naked, pummeling my landscape
with invisible mortar. I keep on
turning the pages,
walk down the street,
have dinner with friends.
No one can see her
but me. She makes me leave
the party while everyone
is still laughing and talking.
she is carving out
a blank space somewhere,
erasing my name.
* * * * *
Out of the Water/An Analogy of our Struggle with IC
By Wendy C.
When you first receive your diagnosis, like an evil benediction,
You can feel yourself being pulled under, downward beneath the water,
Until the sky above you is murky and sunlight is sporadic.
Then the pain has you crawling along the bottom, or kicking viciously to struggle
Toward the surface, ever upward toward the light.
But mostly, it’s like treading water, while keeping an eye out
For the big waves that can suck you under or pull you far from shore,
Until it’s only a shimmer on the horizon.
There are weeks when, with a steady stroke, you can feel the shore coming
closer and closer, so that it is almost within reach, and then a sneaker wave hits you, and
A sucking undertow pulls you back, past the place where you treaded water,
Past the place where you perfected your stroke, and began to see progress.
As any swimmer knows, panic is the enemy and struggle tires you out.
Losing sight of the shore is the worst mistake of all.
Disorientation only prolongs your struggle.
All these elements must be present in our awareness, balanced, given consideration.
Treading water isn’t so bad, going with the ebb and flow of the tides can be learned,
Taking a big breath and diving under the big waves means you’ll
Come up on the other side relatively unscathed.
Keeping an eye on the distant shore is essential, and not to be forgotten.
There are some of us who are lucky enough to touch bottom while
Holding our heads high above the water, to feel the shoreline recede and
The water swirl gently around our ankles.
We can reach a hand out to those struggling in the water, and
Form a bridge to those on the shore, encouraging us to come out of the water.
Even those on the shore are occasionally hit with the spray from such a powerful force,
But have learned to shake off the drops of water, and continue walking toward the light.
* * * * *
From Shaken Soul onto Deaf Ears
By Laura D.
Why can’t you hear me crying out to you; pleading for you to hear me?
Too quickly you turn away and my cries falter, caught on the wind ripped away from me falling softly like rain on the ocean to be quickly damped.
I need you to hear me…I need you not to turn away, not to close your eyes and shut your ears to my pleading voice….I am crying; I have been crying for so long.
This pain is eloquent in its insistence, incomparable to you who have never felt its dark caress.
It unfolds inside of me like the thorny rose, perfect and terrible in its beauty.
You only see my outer beauty…my tight smile on my perfect face, the mask you want me to wear so that when you go to sleep at night you do not feel regret.
My hollowed eyes follow your sleeping figure, mercilessly begging for you to see me; exhausted from lack of sleep I haunt you in your peace but there is no peace for me.
My lips strain to make you hear what has happened within me.
Why won’t you hear me crying out to you; pleading for you to listen?
It seems I wait, my mouth parched from a stream of endless words, the many I long to say, all cluttered together seemingly making no difference.
Why? Why? Why?
I wish that my hurt could be your hurt; that you would share in this journey.
With that I might dampen this wound I feel spreading inside of me…made up of my pain mixed with the horrors of loss, frustration and isolation.
My isolation is the loss of your understanding, I am not a child; I hear this body crying out words that cannot even fall from my lips.
This place without you, this corner where you have placed me, is a silken prison, a cocoon that holds me in its clutch until I am silent as the long night.
I need you to hear me…I need you not to turn away, not to close your eyes and shut your ears to my pleading voice…I am crying; I have been crying for too long.
* * * * *
This Disease
By Rae
I wish from this pain I could run,
It’s making my mind and body numb,
Sure, I could take a few more pills,
Hoping all this pain, it would kill,
But I think this I’m going to have to endure,
I don’t know how I can take it anymore.
They tell me the diseases name,
That doesn’t change it, it’s still the same,
All I want is some quick fix,
Not all the pills and prescription mix,
Do something and let me go on my way,
I want it all fixed and gone today.
This time just fix me up right,
So I will know I will be all right,
I don’t want to be sick and tired,
Believe me, it’s getting quite dire,
No more illness is what I hope,
A cure would be nice, or a way to cope.
I’m in pain all day long,
I wonder what organ now went wrong,
I don’t want to suffer any more pain,
I just want a life, something plain,
Get rid of my constant affliction,
And all the remnants of this condition.
All I wanted in my whole life,
Is to be just a mother and a wife,
I cannot do the simple things,
While this disease pulls the strings,
Save me from this dreaded disease,
I’m on my knees begging you please,
Please,
Please.
* * * * *
Untitled
By Anonymous
It must be a bladder infection
so the diagnosis went.
Scribble out a prescription and off I went.
No bacteria present. Gee, I don't understand.
This goes against my 15 minute diagnosis that I had planned.
Give her a hysterectomy see if that helps at all.
It must be that prolapsed uterus that is my call.
She is back again complaining of a pain I cannot see.
Maybe she should try prozac, zoloft, or heck, even ecstasy.
Hello I'm your new doctor for 7 years you have had pain?
I cannot help you but there is a specialist just down the lane.
You have answered all the questions and from what I can tell.
Just give me the cure is what I want to yell!
We gave you a test and from what I see,
you have interstitial cystitis often called IC.
I'm so happy I have a disease that finally has a name!
I'm happy about an illness? Am I freakin' insane?
There is no cure but we will do our best.
We will give you some drugs to help you rest.
Don't eat this or drink that.
Yes, IC can be associated with the pain in your back.
We will take it slow and if this drug doesn't work we will try the next.
And yes, I'm sorry to say IC can ruin sex.
This is not what I wanted. Where is the cure?
Give me some elixir that would help for sure.
There has to be something besides what you say.
I just want to live without pain for one damn day.
I will not give up. I will fight this trauma.
I will not give in and show them my drama.
I will share it with you my sisters in pain.
We will talk about it, cry about it, and know it's not in vain.
* * * * *
Why, oh Why?
By Christine Wolsky
I suffer in pain, day in and day out
I go through the tests, know what there about
To hear the results, the list is so long
“Perhaps you’re depressed .... to .... There is nothing wrong?”
Then one day I find a Doctor who sees
A test that will show this dreaded disease
I wake up and am told I have IC
Happy am I, "They found what’s wrong with me!!!"
Then I’m informed there is no cure
Leaving me living a painful future
I’m thankful to have my husband by my side
Who always supports me with great pride
Without him I don’t know where I would be
He watches me suffer each day, this painful IC
My Friends, My Family support me as they
Watched me change to what I am today
Sad, Unhappy and Suffering in Pain
Seekin’ relief from my pills, so many!
Why, Oh Why was I given IC?
I must have done wrong in my life, could that be?
I’m not strong enough to suffer this way
It’s so hard waking up each & every day
The pain, oh so bad
The burning inside
My body, it aches me
All I can do is just cry!
My Family, My Friends I’m so thankful for thee!
My Babies, My Babies, I’m thankful I had three!
It hurts them to watch Mommy suffer each day
"I’m sorry that Mommy can’t jump, run and play!"
Why, Oh Why is it that they cant find a cure?
To help more like me live a pain-free future
Everyone hurts, not just me
Not just the person who has IC
Families are affected, quality of life has been seized
This is more like a death sentence, than a dreaded disease!
Why, Oh Why, must it be, we suffer so bad?
I pray, we pray for that cure to be had!
About the author: New Port Richey, Florida
36 Years Old, Happily Married; Mom of 3 kids, 11, 8 and 4
IC and Fibromyalgia
* * * * *
When I'm Free, I'm Gone
(Poetic thoughts and sharing only) with Laura D.
Today I was asked by a family member visiting the site, "Aren't there any positive, happy days? Shouldn't someone post something about a night they slept well or a decent day?"
What could I say to that?
"It's not that we are destroyed or negative or truly bitter; it's just that when we have good days we are too busy soaking them in to write about them. Minutes of joy rarely inspire poetic outpouring. But sharing the pain and confusion, that is a necessary release. But still, I feel guilty -- why can't I spread more joy?"
* * * * *
Purpose in My Life
By Rae
As I sit and contemplate,
On the purpose of my life,
Is it about love and hate,
Or carrying burdens and strife?
Maybe, about the people I meet,
The ones I already know,
Helping a person on the street,
Or a seed I have yet to sow.
I’m sure it’s about my family,
Watching my children grow,
Learning what it is to be me,
Sharing all that I know.
But then it could be an impact,
I’ve had on some person or other,
Or something far more abstract,
A difference made on me by another.
This is something I’ll learn one day,
Why should I sit and worry,
Do I even have time to play?
Must I run through life in such a hurry?
God knows how it all ends,
I probably won’t have a clue,
His rules I cannot twist and bend,
The purpose of my life, God, is you.
* * * * *
Indecision for the Battle
By Laura D.
Such bright hues this candy store of prescriptions pills that surround me, that jam my cupboards and line my desk. My own personal candy store, my own personal fear.
Who knew I would look upon such promise and hope with a trepidation unfelt before for greater things? Monsters I have slayed in business, great pain and gain survived in my personal life...all laid to rest at the feet of tiny pills that hold such promise, cause such fear...my own personal fear.
Sometimes I stand before their shrine, a hand reaching out slowly to take the bottle while I ask myself, "Will I today?"..."Is this the day I will try this one?"..."Will this be the one that helps or yet another that hurts?"
I do not know if it takes bravery, foolishness or sheer force of will to turn the tiny cap, to put the pill to my lips, to close my eyes and swallow. I do not know; only that sometimes I can take those tiny steps but mostly I cannot.
Mostly I lay in this indecision, thinking of all the bottles lined up like toy soldiers to fight my battle, lining up endlessly behind me to win this war. I make battle plans -- this one, this is the one. I will start it tomorrow, I will monitor it... They may fight, but more often than not their fight is not for me.
I do not know if the plans I make are for me or against me. Only that once fulfilled I can only wait. Wait in hope; stifle the fear, cultivate the prayers tiny and silent, loud and screaming, that this time it will be OK. That this is the one, this is the weapon that will win my battle even if just for today. This is the candy that will taste sweet upon my lips...
I know the art of war was never fought like this...
No candy store ever held candy that was all so bittersweet...
I look to these tiny pills as so much hope and so much pain.
My angel my devil. My savior my destruction.
I cannot know until that one act, that brave, foolish act of taking that one tiny pill, what future awaits me.
I cannot know. I do not want to know. But so much hope requires proof, requires action.
My life, before, was built on action; I wielded the sword without thought at the head of the battle...I traipsed through the candy store with innocence and naivety unafraid to taste their sweetness.
Now I wait. Now I watch. I plan. I craft my plans, my battles to fight. Not today, no not today....perhaps tomorrow I will wield that sword, send my army to fight, taste that candy upon my lips and find it sweet.
Note from author: This is my least favorite poem but I had to express this. My frustration with finding vitamins, supplements, over the counter remedies, and pharmaceuticals that my body can tolerate is infuriating. I truly do plan and scheme with the hopes I will have a tolerance for the next capsule, tablet, powder, or lozenge.
* * * * *
I.C. You Burn Me
Kathleen Monteverde
Where did you come from?
Why don't you leave?
Leave my body and let me be.
What strength you have over me,
Leave me alone let me be free.
You horrid devil, you horrid I.C.
Can't you see what your taking from me,
My life, my passion and my family.
You drain me, strain me, refrain me from my love.
You burn me, concern me with your effortless strife.
You I.C. are killing my life!
No comfort I have found.
No remedy to calm down.
Everyday is always the same.
Everyday is filled with pain.
A strong person I use to be.
then it happened, I got I.C.
A fighter for over 15 years.
sleepness nights and many tears.
* * * * *
I Remember Being Beautiful
By Wendy C.
I remember being beautiful.
Turning heads with golden hair,
Drawing eyes with a lithe body
And legs like a long drink of water.
Now life and pain,
More experiences than years,
Have etched themselves on my face,
Added a heaviness to my body
That changes me.
But I remember being beautiful.
* * * * *
Bumpy Road
By Christine Wolsky
Feeling so alone
There’s distance in my home
Why is it that you just can’t see…
I never meant to hurt you
I never meant to be
The one who was given
This painful IC
I often cry in silence
The pain so hard to bear
As painful as IC is
It hurts more you don’t care
I blame my illness for this
The lack of you here by my side
But what it comes down to is
You don’t want to take this ride
I guess I cannot blame you
It’s a very bumpy ride
There are lots of swerves in the road
Even I’d like to run and hide
But what it all comes down to
Is you can leave this life
I, however am stuck here
Just trying to survive
The pain, oh it wont kill me
I will suffer, yet survive
It’s the pain of not having you
Every day here by my side.
* * * * *
Don’t Forget Me
By Wendy C.
I have a disease that’s called IC,
It wasn’t always a part of me.
And it causes pain, tremendous pain
Of which it’s impossible to be free.
If you look closely you will see,
The furrowed brow that marks me,
An outward reflection of internal pain,
Caused by the mystery that is IC.
But if you simply glance at me,
Lying there, watching TV,
You might look at me with disdain,
Not seeing the reason I can’t be
All the things I want to be.
I will list them, so you can see:
Happy, healthy, comfortable, useful
And most of all, with the ones I love.
Smiling, laughing, eating good things,
Part of a family that loves me,
But mostly, just being me.
IC has taken all that away.
It could happen to anyone,
It happened to me.
There are days when I am well
Enough to forget that I have IC
But it doesn’t let me forget for long.
Often, I pretend I’m well,
Just to be myself for awhile,
To make myself, and those I love
Remember who I really am,
Behind the pain.
Please don’t forget me,
For you are in my heart, always.
* * * * *
Two Minute Poem
By Emily Massagedoula
the setting sun
ends another day
where i have survived
the battle inside
my physical body
* * * * *
Sisters in Suffering
By Pat F.
I have a sister though not from bloodlines,
Pain and suffering are what our souls combine.
Each day now I beg God, I plead for an end,
My sister sends love and again tries to mend.
I am tired of this pain its grip years and years,
My sadness is warm and found in my tears.
I beg and I plead God will take me on home,
Home to a beautiful garden where only Serenity is grown.
Again there is my sister her pain also festering,
Her battle and mine are a question left nesting.
The why, why me, why now will this end? God only knows,
My anger is directed to the healers my bitterness grows.
The end of my pain needs to happen soon, I know each of you knows,
Life as I live it grows darker there is no repose.
Even my sister feels the deep-dark quarry,
Where bit by bit it gets harder, darker, buried in worry.
Oh sister, my pain will it ever slip away?
No help, no relief, I am not even sure why I pray.
This day and that day God the same painful day,
My heart is scarred from suffering I finally have nothing to say.
* * * * *
Here, Not Alone
By Laura D.
Soon the sky will be turning pink with morning's light,
but still I sit here haunted and ghostly, exhausted from the pain
that steals my sleep.
My only comfort now, is in each of you who visit here,
who visit this site, to share in the knowledge that we are not alone.
I write this, too tired to think but needing to reach out,
needing to feel understood, wanted and loved.
My family and friends, they cannot understand,
they feel pity, loss, anger; it is less painful to ignore, to forget.
I cannot forget, as I am the one sitting here, reaching out to you;
sitting here in the shadows with the screen illuminating my pinched face.
If you are reading this, if you have come here on your journey,
today, tonight, tomorrow...I am sorry because I know you understand
what I am saying, what this all means.
What is this gift of pain and isolation?
Some lesson I was meant to learn and now must feel echo through my
very bones? I guess that is my guilt, my gift -- always seeking the reason.
The reason is all that drives me, for if there is a reason,
then certainly there must be a solution.
But, each day, each night, I pay a new toll.
This pain is isolating; it has carved a small spot in my soul and huddles there,
slowly taking away everything I hold dear.
The light is dawning outside my window, but there is no answering spark inside me.
I beg to close my eyes in peaceful slumber, but for the pain, I sit here hollow.
For each of us who has come here, today, tonight, tomorrow...
I pray for us, for a solution, a cure, a peaceful rest;
a hope that with the dawn will truly shine a new day.
* * * * *
Home
By Laura D.
She told me that eventually I would come to a place where the ground was warm
and I could lie all night listening to the earth,
and not feel the stirring need inside myself.
She told me I would come to this place like a child, arms open, humble and cold,
bereft of fear, hollowed out by my pain;
ready for hope to fill me.
But she told me, even at this end, when I lie down tired to rest, the flowers as my blanket,
I would not be giving in,
I would not be giving up.
I would just be going home.
* * * * *
Ode to Almonds
A moment of silliness over a healthy snack.
By Laura D.
What would I do without these crunchy treats?
Almonds, they’ve become a favorite to eat.
Sugared, salted, creamed, and sliced…
Almonds are everything that is nice.
Who knew you could do so much with a nut?
A treat, a garnish, a butter, a meat.
I would have never known, but
Peanuts became a food I can no longer eat.
* * * * *
A Metaphor for Change
By Laura D.
Looking up, the mountain is too big to fathom; I cannot see its peak or fathom its reach.
I have no idea what awaits me.
With each step, each hand hold, each yearning forward I strengthen my reserve; do or die.
I will not be killed by this mountain; I will not let this disease swallow me.
Half way up, I cannot see the bottom or the top; I can only move forward,
trusting almost blindly, that I am on the right path.
With shuffling feet I move, reaching one steep rock face after another.
Each time I must step back with deep breath, and search to re-find my way.
Often I am afraid, and cold; wracked by the loneliness of this journey as I struggle toward the top.
There are so many dangers; challenges I could never have imagined when I was safe on the ground.
But this disease, IC, has made it impossible for me to take life for granted.
I could no longer walk through each day with my feet planted firmly on the earth.
It has forced me to grow muscles of hope, faith and mental fortitude to carve out this journey of life;
to climb this mountain, one step at a time.
Struggling is inconsequential; once started I have found that it’s easier to keep moving upward and forward than it is to find my way back. Back to what?
This climb is climbing out of my past, leaving that life behind and moving toward a belief that up there,
at the peak, at the top, the air is clear, the sun is warm, and life is good.
I will not be killed by this mountain; I will not let this disease swallow up all that is me.
Today, I will continue to climb.
* * * * *
Things I Miss
By Laura D.
I MISS Food – I miss words like tangy, spicy, hot, barbequed, cheesy, tart, sour, gooey, bubbly, and chocolaty. I don’t want to see another pear!
I MISS Exercise – I miss words like run, dance, jump, play, and ride. I don’t want to walk around the block!
I MISS Sex – I miss words like hot, steamy, slippery, passionate, hard, and raw. I don’t want to be careful and afraid!
I MISS Spontaneity – I miss words like let's go, just leave it, don’t worry, why wait, and act now. I don’t want to have to plan my every minute just to survive; just to minimize my pain!
I MISS Fun & Fitting In – I miss words like parties, dinners, cocktail hours, brunches, lunches out, and barbeques. I don’t want to bring my own food and watch others enjoy!
I MISS BEING FREE to be me without all these boundaries. I feel like I miss a part of life.
You might say, I am free to live, that these are little things, but once they were a part of me as they are a part of you; a part so easily taken for granted. You cannot see, you cannot know what it is like to lose a part of you! I want what I miss!
* * * * *
I See IC
By Kathleen Chavez
* * * * *
Would It Be Easier For You If I Lied?
By: Liz G. aka Bromwynn
WOULD IT BE EASIER FOR YOU IF I LIED?
IF I NEVER SHOWED PAIN AND SMILED WIDE?
IF I KEPT MY SILENT SCREAMS LOCKED UP INSIDE?
WOULD IT BE EASIER FOR YOU IF I LIED?
WOULD IT BE BETTER IF YOU NEVER HAD TO ASK?
THAT PATRONIZING TONE SO POORLY MASKED?
THAT INVALID STIMGA ON ME CAST?
WOULD IT BE BETTER IF YOU NEVER HAD TO ASK?
WOULD IT BE NICER IF I HAD NEVER TOLD YOU?
KEEPING LIES AND NEVER BEING TRUE?
HURTING OTHERS AND NEVER CARING WHO?
WOULD IT BE NICER IF I HAD NEVER TOLD YOU?
HOW WOULD YOU LIKE IT IF YOU HAD TO LIVE THIS WAY?
TRYING TO LIVE NORMAL LIFE FROM DAY TO DAY?
TRYING TO TALK BUT YOU IGNORE THE WORDS I SAY?
HOW WOULD YOU LIKE IT IF YOU HAD TO LIVE THIS WAY?
* * * * *
My Husband
By Danielle Rapier
I lay in bed for hours trying to fall asleep.
I hear you beside me, your breathing is so deep.
I am eternally tired. I'm exhausted to my core.
I just want to sleep. I don't want to hurt no more.
Here I lay screaming my silent screams.
There you sleep, dreaming your peaceful dreams.
I want you to know me in all ways, to be by my side.
See my fears and thoughts, see the secrets I hide.
I want you to understand the real life I live,
to really see me when I have no more to give.
You don't see my pain, you don't see my despair.
You pretend I'm whole, happy, normal. It's Not fair.
But I understand why you want to pretend me better.
You can't take I.C. away, you can't be my protector.
* * * * *
Am I Deeper Because of You?
By Laura D.
Playing with the cards IC has dealt me
has provided a new dimension on life.
I struggle with my own experiences
and am carried into the pain of others
through our mutual suffering.
It's true that I feel more because of you;
the pain adds a new dimension to my soul.
I am awakened to the grief of others
where I was blind before.
I give while you take, but
there is never a balance.
My hand always loses as long as you deal, IC.
* * * * *
All IC
By Kharma
* * * * *
Figure
By Melynn
* * * * *
Speaking Out
By Bromwynn aka Liz G.
Someone told me that I dwell too much
that I'm knee deep in despair
I shouldn't talk about IC
or the burdens that I bear..
I shouldn't seek out others
who share in this awful test
I shouldn't write or speak or seek
information about my personal mess.
That by dwelling on this wretched thing
I bring myself and others down,
in silence and in isolation
those that love me want me bound.
They don't see that by speaking out
we take away shame and fear
we regain the hope and strength we have
to wipe away our tears.
we can push back anger and sorrow
we can push past the pain
we can return to our daily lives
and take back what IC tried to claim.
we forge a link between ourselves
those who can truly understand
when all others walk away
we'll find an out stretched hand.
* * * * *
What IC Teaches Me
By Bromwynn aka Liz G.
Today I saw a glimpse of the woman my daughter will be someday.
She tucked me in and stroked my hair, telling a story.
My son, my little man,brought me a cold pack and his pillow
for me to rest on, my baby was kissing me.
I wondered what this time of pain for me was teaching them.
I hope that because of this disease they learn compassion.
I hope they learn to nurture and protect
I hope they see how much they impact others
I hope they learn courage to face their fears
I hope they see my gratitude when they help me into bed
I hope they learn that they can depend on each other in hard times
I hope they find peace in the simple things and cherish every day
I hope they learn laughter and love are the best medicene
I hope they learn that illness doesnt equate to weakness
I hope they learn to have Faith in God.
I hope they learn to have patience with themselves and others
I hope they know I love them even when mama can't play
My children left me to rest, taking my youngest with them.
They blessed me with their smiles and told me they would
take care of me today. Lesson indeed.
I hope that from my beautiful children I learn humility
I hope that I learn to be more loving and more positive
I hope that I learn to forgive myself of my limitations
I hope that I learn its ok to ask for help and to accept
it with gratitude, not attitude
I hope that I learn to show gratitude better
I hope that I learn that Im a power unto my self and to never
let IC dictate who I am
I hope that I learn that though others won't understand my pain,
I can be understanding of them
I hope I can learn to stop worrying about those who dont care
I know that I am watched over by my Heavenly Father
I know that I am blessed to have a man who loves me
I know that I have incredible children and they are my teachers
I know that I am lucky to have friends who love me
I know that this disease IS real
I know that even in the darkest night,longest day, loneliest moment,
there are others like me who reach out
I know that someday this fire of pain will refine me into the strongest of steel
I know that when I walk, I DO NOT walk alone.
* * * * *
0 to 60, I'm in Pain
3 AM ramblings as I lure my mind off a misplaced bout of pain.
By Laura D.
Irony is how I see the hold you have over me.
I am alive in life, grateful for my reprieve; but how you do deceive
as pain washes over me.
Zero to 60, my life changes when I am in pain.
I can be dancing, singing, filled with joy
I never realize it for a trick; such a cheap ploy.
I walk away into the light each time thinking it's over
but always once again the pain you bring leaves me cold and sober.
Zero to 60, my life changes when I am in pain.
In an instant I am not the woman I have become
but a sad, lonely child struck quiet and dumb.
I feel endless sorrow and fear so unique
it's hard to believe life won't always be bleak.
Zero to 60, my life changes when I am in pain.
I am grateful for the blindness the painless moments cause
to forget the agony and not to pause;
to embrace life with the hope it has finally set me free
at long last able to just be me.
Zero to 60, my life changes.
* * * * *
No "fix" for IC
By April Chen, Beavercreek, OH
Four years it took, with many doctors taking a look
My young life exercising, teaching aerobics and being alive
became such a strive.
I became someone I did not want to be.
Taking a pill for the extreme pain was all me.
Never had I ever relied on medicine, instillations, inner strength, family
and God so much!
I am so blessed and sometimes it is all that keeps me going,
for I have the love of a compassionate, patient man that is unwavering
So much he has sacrificed in just over a year
I love him so much, but with IC and the pain sometimes fear
makes me feel like he will one day get tired of the tears.
There are tears of pain, love and more pain. Countless hospital stays and scares
of complications have become my life.
Once four years ago before this nightmare, I was so full of life!
Something the love of my life has never seen in his wife.
I pray constantly God will create a healer through someone for this disease,
for it has honestly brought me to my knees!
I want to be the vibrant, smaller, young woman I used to be
before IC.
God please protect my husband's love
You're in control and the one above
In your vows, you say, "In sickness and in health and for better or for worse.."
But IC has been such a curse!
Losing the one I love would make IC so much worse!
* * * * *
Dancing with my Demons
By Laura D.
I apologize if this is at all macabre. Most days I am pain free but my nights can be different and sometimes filled with agony and frustration that usually starts as I lie down and can terrorize me all night. However, last night was very different, I dreamt of the most terrible bladder pain being inflicted upon me – I actual dreamed I had a dragon tattoo on my hip that turned from green to scalding red as my pain escalated. Suddenly, I awoke in the dark to terrible pain, awake, dazed and very afraid of this new turn. I had only been asleep a few hours but I forced myself to read for a little while to try to exorcise the demon that had come from the dark into the light. Tonight, when I tried again to lie down I felt I had to get this out, I had to write about it. I am sharing it because while it is filled with blackness, it is my truth, my demon, which I hope to set free by writing about it.
In the night, in the dark,
in the deep, deep silence…I feel everything.
In the night, in the dark,
there is nothing to chase away my fears,
no one to wipe away my tears
and help me pass the hours ‘til the light.
In the night, in the dark,
I alone stand to face my demons,
ever diligent trapped by pain in this phantom plane
without sleep, I shiver and wait.
In the night, in the dark,
I am alone and these hours are endless…
endless moments ticking by, I have come to hate.
Yet, this time of nothing is everything
marked by my pain…my demon’s delight.
I fear the night and the pain,
not so much as I fear death.
But here, alone, in the night, in the dark,
the deep, deep silence consumes me.
In the morning, in the light,
I’ll push my demons, my evil sentries,
to the corners of my mind.
I will forget, blissfully forget, until day soars into night
and my demons return to haunt me.
In the darkest hours of night
my demons tease…the terror of this disease,
Will it never release me?
* * * * *
Through the Flames
I did not draw the phoenix but I bought the rights to use it since I thought it was fitting to express how I want my battle with IC to turn out -- rise from the flames, reborn and new!.
By Laura D.
If it is to be, the fight will happen through me
Indecision, steps for flight, only mask my sight
Save this life, save this girl
Do or die.
The flame is an old flame, a cold pain
A lover past his prime, marking time
Take this life, kill this girl
Do or die.
FIGHT. FIGHT. FIGHT.
Through the flames, past the pain.
A battle; life for life.
Save the girl, kill the girl
Do or die.
NO. I WILL NOT DIE.
I WILL NOT LIE.
I WILL NOT LET YOU WIN.
I will feel the flames, live the pain.
Vanquish all that is me to see, to be.
I fight for this life, this girl.
Do or die.
Like the phoenix through the fire, I will not retire.
Burning pure and bright, I fight to conquer this dark night.
Do or die.
I save the girl, I save the girl.
I save my life.
* * * * *
Day of Grace
By Bromwynn aka Liz G.
This poem was inspired by Laura D. after an email. This poem is for those who worry we dwell too much on the negative side of IC, those that wonder what we would do on a good day....
Today I was granted a day of grace
a day free of guilt or pain.
What should I do with this happy blessing
before my curse comes back again?
I could take a ride out to the country
have a picnic and enjoy the view,
go shopping at some fance store
or take the kids out to the zoo..
Perhaps a dinner date with my husband
and a romantic getaway.
Let's order a pizza and rent a movie
no let's take the kids to the park to play.
What I'll do is hard to decide
when so much is needed to be done.
I want to waste no time in talking
on this golden day I've won.
I'll cook and clean I'll dust and sweep
with my kids I'll sing and play,
I'll shop and drive I'll sort and fold,
in my loving husbands' arms I'll lay.
And at the end of this perfect gift
I'll utter a thankful prayer upon my knees
tho whatever's done will need doing tomorrow
this day will always be precious to me.
* * * * *
Don't Get Sick
By Anonymous
Don't get sick
Unless you're good at faking it
Don't get sick
Unless you can smile like a pro
Don't get sick
The pain...They just can't watch it
Don't get sick
You'll have no where else to go.
Don't get sick
He doesn't want to hear about it
Don't get sick
Unless you can play by his rules
Don't get sick
Unless you can heal according to "schedule"
Don't get sick
Most especially if you fall in love with a fool.
* * * * *
My Healer
By Pat F.
Her hands a tool for the healing came to my rescue on this beautiful day
All my hopes for a feeling of wellness were hinged on her years of fine-tuning her touch.
As she spoke my heart leapt for joy, I now had a gift one can't possibly measure.
What I know to be true in my journey to wellness, is that hope looms out there just ahead.
Before the sun was to shine out through my body, the
raging of tight on tight was our challenge to be won.
We took to the task of hands to my body and hand to the fighting muscle.
Now we, my love and I, armed with her knowledge,
wisdom and grace, are left with this mighty task.
We will venture to change tightness to relaxed and weak to strong.
* * * * *
How I Feel About Pain
By Pat F.
I hate you pain, you rob me and you really are a bother,
You bring out sadness and longing for relief, I just need to scream and holler.
The why in this life of pleasure, good times and smiles,
Do I suffer such loss of spirit while my body riles?
Lately a bitter berry is the nourishment for my soul,
As this enemy, lurking around inside my body takes its toll.
The symptoms of this illness I despise and I dread,
Endless days and nights I go on wishing for the sweet bread.
While looming disguised where no one can see,
My wandering and searching for answers, am I now to be free?
I hear the softness of the harp and the violin's notes are flowing,
There is a gift I am seeking; I believe God is all knowing.
* * * * *
I am awake while you sleep
By Pat F.
This night I am here while my lover sleeps,
Wandering through the dark halls of pain.
Out of the window the blackness and I are companions of sort,
The black of the night will wax and wane, as will my pain.
It can be so lonely a time, pain is a destructive demon,
Pain is a thief who robs me or restoration, comfort and peace.
* * * * *
The Time That Binds
By Laura D.
Eventually, you will see you were free.
The pain, such a bane, was not your life, not your cage -- just a page from eternity.
You lived, you cried, you sighed, yelled out, voice carried with the tides – why me, why me?
But still you carried on, this life, this strife – unaware you were free to see, to be.
Too caught in a net of pain, rubbing you against your grain, grinding away each day – nothing left to say.
Silence, darkness, pain, no reprieve – inside you grieve.
A trap, a net, a cage – this rage tears at you, drives like a nail through and through. But you are free, to be, to see, despite this agony.
In your mind, in this time, you can dance and sing – touches like raindrops upon your skin warms away all trace of what the pain has wrought in you.
Hurt, ache, but make no mistake – it is just a page from a time that was yours, that was mine – we could dance or we could cry, our chance our choice before we die.
We are here upon this plane, so much to give so much to gain – push aside the pain that strangles, reach out, reach up, and learn to breathe again.
Time is short and the plan’s in motion – choose the gentle rocking of the ocean to quiet your fears, your tears, instead of reaching for the angry crash of a thousand waves on an endless beach, seagulls screeching each to each.
Endlessly I beseech – reach for my hand my heart to pull you from that darkened place and feel the sunlight on your face.
For life might not heal, it might steal, it might angrily appeal to keep you silent, sad, angry, mad – but fight, oh fight to make it right for you to see, to be, that you can be free despite what pain does to you, does to me.
* * * * *
I.C. Dinosaur Cap
By Erika, www.erikaray.com
PEARS CONTEST CONTRIBUTIONS
You may be asking yourself, "Why have they started a pears category? Because pears are a blessing and a curse to many with IC -- a blessing because they represent one of the fruits many of us can eat, and a curse because pears get old quickly if they are the only fruit you can eat!
Four Pear Paintings
By Melynn
“I saw your post about pears and had to laugh. I've painted so many and now I've gone three dimensional and am making them in clay. The following are four of my favorites. I have to say I love pears, tolerate them well and am grateful that they are so easy on my system. I can't imagine ever getting sick of them!”
 
 
* * * * *
IC Pears
By Anonymous
IC pears in the morning
they sit in a basket on my dining table.
IC pears in the afternoon
they sit in a basket on my dining table.
IC pears in the evening
when sitting at the dinner table.
That darn basket of pears,
it Cs me and wonders why I don't
want anymore pears.
* * * * *
Oh Pear, I Despair
By Laura D.
This is my pathetic twist on words, which probably makes no sense, but analogizes the pear to the au pair, or care giver. You will probably sense my loathing with pears at this point in my IC diet. And no, I do not want to take a bite out of an actual young female!
Au pair, is not thy job to coddle me?
Au pair, why have you forsaken me?
Au pair, I brought you in and set you on my table to nourish me.
Au pair, how you now repulse me.
Au pair, you were so sweet when first we met.
Au pair, your many charms I could recite, sweeter always with each bite.
Au pair, I have grown quite tired of the site of you.
Au pair, why can't I retire you?
Au pair, au pair, it is my despair that you must be,
the only fruit that's safe for me.
* * * * *
POEMS THAT MAY BE CONSIDERED PG-13
The following may have potentially mature language, depending on your age / sensitivity.
I C and Me
By Pat F.
I’m sitting here thinking I wish I could cry
I’m sitting here thinking I wish I could die.
It feels like sharp glass is wedged in my ass
I wonder and wonder how long will this last.
I can’t stand, I can’t sit, I just need to lay
My hips, back and pelvis have pain every day.
I wedge a hot bottle between my legs tight
In hopes I can get some rest through the night.
I lay on an ice pack to get some relief
With a prayer and desire this time will be brief.
The pressure and pain just won’t go away
The frequency plagues me both night and day.
There are days when IC rules my life
Making it arduous to be a friend or a wife.
My bladder screams and the urgency yell
The pain, yes the pain, I think this is hell. |
