Saturday, May 28, 2011







Oh, and another thing.

In case I forgot to mention.

I am in Pain.

I have been IN pain for two and a half years now.


And another stupid thing:
When i told a relative that i am in need of help and that i am alone and that i don't know where to turn...

She said these words of very deep wisdom
"We all die alone."

Isn't that Buddhist?

Too bad it was not said with compassion.

So, yes, i am angry. If i am truthful, many friends have disappointed me in their inability to stick by my side. And relatives have hurt me too, in their apathy and indifference.

And many doctors have shown me their inhuman side.

The baggage is heavy, most days i just let it sink to the bottom. I am too busy trying to stay afloat to feel all the hurt that is there for me to feel.

And like i said earlier,
those that stayed by my side

they are coming with me to heaven
S/He or no S/He

The Pain of Pudendal Neuralgia





art therapy workshop, 2011


The Pudendal Neuralgia Pain Menu


This is the Pudendal Neuralgia Pain Menu

As you can see there are many choices in this Chamber of Torture

Chamber of Torture
Pick your Favorite
We have a wide variety

There is BURNING
There is STABBING
There is TWISTING
There is ELECTRIFYING

A rock on fire twisting and turning and pulling my insides apart
Endless stabbings, a knife plunging deep into my flesh again and again and again (hours on end, night after night, weeks, months....)
I plead to die
I beg to die
Acid poured into my pelvis
A stake lodged deep inside my vagina
2000 man-eating ants eating away at my insides

My parents are so scared, I scream and shout, I cannot be alone cuz I am afraid that I may try to kill myself. They are sleeping. I scream. They wake up. I shout "The devil is inside of me. I can't anymore. The devil has taken over my body." I scream and scratch my arms with my nails leaving red tracks. I see my mom's face. She is shaking. She is terrified. I have to control myself. They will have a heart attack. They urge me to get into the bathtub. Their terror makes me calm down. All i want is to die but i don't know how to kill myself and i could not be violent towards myself.

This happened a while back. The next day we got me on Lyrica. I was on no medications. Without medications people commit suicide. Without proper pain management people mercy-kill themselves. Some try and succeed. Some try and do not succeed. Some do not try...

There is so much work to do. I am just spitting it out. I am not sorry if this scares you. I want you to know so that it won't happen to your wife or to your daughter or to you. I want you to know cuz you are one more person that will  know the truth. Pudendal Neuralgia Kills. It kills people just like you who just want to live a happy and meaningful life. People that just want to have and love their families. People like you that just want to be able to look at a flower and see its beauty and be happy in their lives.

People talk about God. I can assure you that God was NOT with me there. I was alone in the corridors of hell, choked and abandoned in the dungeons of suffering. God was not there. He was not there. There was nothing there but pain and my stubborn persistence to suffer it for the sake of my parents. God is inside of me. He is not an external force that is coming to save me. He sorry She or rather S/He (maybe that will be my new terminology for God) did not speak to me in my torment. There is absolutely nothing spiritual about pain or suffering. PNE PAIN is not a difficulty that can be turned into a challenge. PNE pain (untreated and unmedicated) = DEATH = THE END OF LIFE= goodbye life=devastation of family and friends=Suffering and Suffering

I used to have a fantasy of dying in the woods, amidst the deer. Sometimes they adopted me and somehow i did not die. Usually I froze to death or starved to death. A lovely longed for natural death. When I told the 'therapist' that i was seeing at the time about my fantasy of dying in the woods, she said "Well, what's up with that?" A night in my body would have helped her understand what's up with that.

I also used to meet a little deer that was wounded and we used to lay down next to each other and talk to each other. I would ask her what kept her going. She was a small she-deer and she suffered from horrible pain. Yet still she saw much beauty in life and she wanted to live. I learnt from her.

My imagination helped me make it through the nights of terror and torture. Sometimes my spirit was stronger and i met my helpers: the African Medicine Woman, the She-deer. Maybe there were others too but they were alive and real, just far away, a murderous plane-ride away.

I wanted to make a post of the stupidest things that have been said to me,
I will start now

After turning into a skeleton from not eating due to unmedicated pain,
"You have no boobs anymore"

After telling an x-psychiatrist that i am terrified of the pain all the time, that i have flashbacks of being in the excruciating pain in the corner of my room, i was told
"Get a Life"
I wondered what i was living. I thought that i was living my life. Never went back to her.

"Its from stress."

"She is being dramatic."

Oh, this was a good one too
"Pain is part of life. It means that you are alive."

Another really sensitive one
"I want to see you out in the sunshine tomorrow, like other people. It is not good to stay inside."

I am sure that I have more

Oh yeah, a doctor that i called a few times to his home clinic informed me that if i call again he will....(fill in as you wish)

What can I say,

Remembering, how i banged my head against the wall over and over, trying to get my mom to understand that i cannot take it anymore and that this is serious. None believed me. Doctors just sent me to the next doctor. And to the next one.

Pain can make you look like you are insane. But you are not insane. You are in Pain and Nerve pain can take your mind over completely.

I remember reading the PNE forum and reading a message about one of the members. Christopher or Christian had committed suicide. I thought to myself that he is so lucky that he no longer has to suffer like the rest of us. I was happy for him that he succeeded, that he no longer had to suffer anymore.

Today i see things a bit differently. Chris I am sorry that the world lost you. I am sorry that you did not receive the help that you needed. I am sorry, very sorry. Maybe you understand everything. In the same way that I understood you. Maybe when you read my blog (i am inviting you to do so, you are invited to write here as well. ) you too will understand everything.

I know that this post sounds crazy. It isn't. It is all true. And i am so so sorry that it is all true. And i am so so sorry that my father is suffering so much. And i try to live every day with respect and with hope.
And i thank all of those that stood by me while i was going through what i hope was the worst of all of this. Cuz their love reminded me that i was not crazy.

I suffer from Pudendal Neuralgia.

Pudendal Neuralgia is like psychosis of the Pudendal Nerve.

Anyway, I do not believe at all in the word CRAZY.

No such thing exists. People that are mentally ill have a disease in their brains. Why do we stigmatize them and say that they are sick in their souls? They are brain-ill, that is all. Brain-ill. That will be my second new word for the day.

S/He is Brain-Ill.

Love,
Atara

Wednesday, May 25, 2011

Dedicated to my first follower








Hi first follower
I wanted to tell you that i can hear you
I wanted to tell you that i can see you too
I swear that you are not invisible
Even if like me you feel that you are

Hi first follower
I wanted to tell you that you give me hope
I wanted to tell you that you are not alone
Even if like me you feel that you are

First follower,
Thank you for joining me
Give me your hand
We have a chance
We still have a chance

Hold tight and we will make it

Pudendal Neuralgia Speaks





Sorrow

When Will I Be Heard?

With the sound of my skull crushed between the train and the railway tracks?

With the snap of my neck in the noose?

With the cry of my orphaned child for its mother's breast?

Maybe I will not be heard.

Will I be seen?

In the despondency of my father's loss?

Or in the terror of my mother's face?

With the blue bloated body pulled out of the lake?

The blood from my wrists must have a recognizable smell.

When will I be listened to?

Only after i have lost everything?

Why did you not hear me when i spoke softly and explained that i am hurting?

Why did you pass me on and on and on and on?

I was still walking then, still talking then, still hopeful then.

Why did you?

Why did you?

Why did you not hear me when i could still talk and walk and explain to you what was happening?

My bones can speak, buried in frozen earth.

But all that is left for them to say is

sorrow, sorrow, sorrow

and the muffled stench of my flesh speaks too

as do my hands that lay here tied in gauze

sorry, sorry, sorry


art therapy workshop, 2011

Monday, May 23, 2011

My junk-yard of a body is shouting whhhhhyyy???








Why was I cursed with this condition?
Why? Why? Why?
And how strong do i have to be to keep on fighting through every day, hoping that i will walk into a better one?
I am so tired.
And at times / all times scared.
What happens to me when my parents die? When i have none to help me?
What happens to me when i am older and alone and cannot work and have no income?
I hate these thoughts. They scare me like the boogy man. I try to send them away. I try to be a Buddhist about all this. I try to breath today. But tomorrow still leaks into my mind and lurks behind my thoughts.
What happens to a soul that is trapped in a broken junk-yard of a body?

Exercise, plane-rides, squatting to help hold a washing machine, sitting on hard stools while on the potters wheel....what?
What did i do to deserve this punishment? And with what spirit do i keep on going?
My back hurts, everything hurts and aches, as though i am made of parts that no longer connect to each other.
I am so tired.

Why was Friday such a good day? And why have the past few days been so painful?

Sorry, there is nothing creative in me today.
Today is a why day.
Another why day.

Is it the gardening that made it all worse? The bending and the squatting and the fact that I dragged a bag of soil just a bit.

The fact that one day my body will no longer live is a comforting thought.

To disintegrate and be eaten by worms and have all kinds of tiny critters crawling through my skeleton seems so peaceful. Come, eat away at my dead nerves. Come slither through my pelvis, come attach yourself to my ribs, take a walk along my high cheekbones and slide back down. Slithery crawly things like the ones i saw while gardening today, you are all invited! Feast away. I have finally found peace.

i sure as hell hope so. who knows what other torments might be awaiting my perky little soul.
there is no guarantee that there will be peace.

so what can i do to be more productive now. how about a warm bath??
Okay girls, it is bath time.

Love

Saturday, May 21, 2011

Started the video!!!








Hey friends and followers,
I haven't publicized this yet but i hope that when i am ready to i will have some friends and followers.
So, today we started working on the video. One day i hope to have it attached to this blog as well as to my name on the pudendalhope forum.
Yesterday was a good day, the kind of day that makes me think "okay, i can live with this. i can handle this." And then today, back to fangy and "damn this condition that leaves me exhausted and in bed and in pain" day. I hope i get back to the good day quick.
Anyway I am very tired today. Telling my story to the video camera is not easy. Telling my story period is not easy. But it will come through and it will spread awareness and information. So whether it is easy or isn't easy is not part of the equation, it is just part of the facts.
I just wanted to share that I started. I have been dreaming for months and months of doing this but was not well enough to commit to it. Now i can and my story has a shape and a form. I guess also cuz i know that i am fighting for life, for my own. No more dying. Just living, the best that i can. To Life. We all want more of it. We don't want to be lying in bed on a beautiful sunny day like today.
Hey you all out there, at least we can still do meaningful work. At least i have gained that ability back.
Sending love

Thursday, May 19, 2011







So, i think that maybe soon i will be ready to go public. I have to do it sometime. This weekend we will start video-taping so this is another step in the right direction and no doubt it will require a lot of work. I want to first of all tell my personal story, it is the one that i know best. And then i would like to create other videos about other women and other disorders such as Vulvodynia and possibly Interstitial Cystitis. There is much confusion and much over-lapping of symptoms and of diagnoses to all three conditions.

 I have many hopes and many dreams despite the goddamn nights of no-sleep and the tight rope pull feeling in my pelvis. (I can't complain, really?????, ...it is all relative...so yes, the pain is under control enough to allow me to live...very differently then i used to, but still ...i am out of the damn corner...)

The first year, which was last year, all i wanted was to be allowed to die of starvation. i ate for my parents. they brought the food up to the corner of the room and i ate for them. And now my dad is suffering from a severe clinical depression and anxiety that is over-the-roof...

So, back on track, this is kind-of like coming out of the closet, oh that could be taken literally too because in the beginning i used to crawl into the closet in my room and shut the door. Pain makes you want to shut everything else out. Light, touch, clothing can be overwhelming. Naked in the dark closed closet wishing i could die, afraid that one day i would have to kill myself. The closet thing ended when i could not find the knob to open the door from the inside and i started getting anxious cuz it was becoming difficult for me to breath. I started shouting to my parents. They were terrified and i promised that i would not go into the closet again.

God didn't dare come near this condition, this nerve entrapment, this nerve damage...but the goddess did. She was brave enough to come near me and she was one hell of a goddess. An African medicine woman. She knew her stuff well and she agreed to meet me only after i brushed my teeth. But that is another story for another post.

And it is time to brush my teeth. Maybe i will invite her to meet me tonight. She always has time for me and she is always encouraging. And she always believes in me.

Goodnight,
to love
we are the keepers of soul
and i know my soul well
oh, it is mischievous
but more then anything it is
kind.
So, if i know one little soul so intimately and if i know that above and beyond anything this little soul is a kind dancing flickering gentle little soul
then how scary could the world be
if there are other souls like this one

VERY VERY VERY SCARY!!!!!!!
unfortunately even the loveliest of souls go insane when their NERVES are TRAPPED!!!!!!!!!!!
RRRRRRRRRRRRRRRRRRGGGGGGGGGGGRRRRRRRRRRRRRR!!!!!

or when their beloved children's nerves are trapped!!!

VAGINA'S can you hear me!!! By the way, one of the greatest bitches that i met was a female urogynecologist. I cried so much in her office and told her that the pain was so bad that when i passed an electric-pole the thought of throwing myself against it crossed my mind.

Her response was "Well, i have never seen anyone behave the way that you are behaving." Then she sent me to the psychiatrist. She was hoping that he would inject me with something that would relax me because clearly i was being hysterical. The psychiatrist met me and was shocked that i had been suffering like this for months and that i still had not been given a referral to the pain clinic. He called her and much to her dismay demanded that she write a referral to the pain clinic.

 By that time I was so broken and desperate. I had seen over 25 doctors in Israel, had had a Laparoscopy done at Ramban Hospital in Haifa...my mother had flown in and I knew that it was time to go back to America. Maybe in Boston I would have better luck.

And I did. For a while......(yet another story....BOTOX....the poison from hell)

Oh Boy,
so wait, i am not finished yet, the head of the gynec. dep't at Rambam univ., Dr. Duetch, told me that 40% of women come out of laparoscopies with no findings. In other words their uterus's are fine. They don't have tumors, cysts or endometriosis or fibroids .....but they have PPPPPPAAAAAIIIIIIINNNN!!!!!!!!!

 Did you and your surgeons ever stop to think a little bit about this strange phenomenon. Did you ever think to explore a bit? To ask around a bit? Maybe it was not written in your text-book 40 years ago when you were in medical school, BUT it is all over the internet nowadays. Did you ever think to inquire, ask around, take the time??????

The answer is No. After the Laparoscopy I was told that if i wanted to i could go to the pain clinic (though i was not given a referral and even with a referral i would have had to wait three months)....i was told by the surgeon that i could try self-hypnosis. And the surgeon disappeared....
Oh, i can't believe that i am still sane.

But then people went through the holocaust and remained sane. We have a will and a spirit that can be devoured and burnt down by anger. Easily. We can chose to keep the light focused always on the truth: this is not just my personal story. This is OUR story. If i tell my story then the next woman down the line might not have to pass through all the dead-end doors that i did.

Oh, and why, why, why
does none talk about the fact that exercise can be so dangerous to our little bodies? That the holy gym with all its machines and mile a minute aerobic teachers might actually be tearing our bodies apart. Another one of those mysteries, another craze that only in twenty years down the road we'll begin reading about the dark side of the gym-craze. Boy, do i regret ever walking into the gym. It was never my style. I should have walked or lightly jogged the beach. But i loved the music and i got into the rush and while i got sexy and tight and felt healthy and fit my pudendal nerve began to cry out. Who knew?

I am so angry that I can't even be angry anymore.
Does anyone get me?

Sunday, May 15, 2011

Destiny and Compassion







Destiny and Compassion

I sat by the river
She sat down beside me
She was as beautiful as I was and she smiled enchantingly
She knew the future; that was her card
She was a Goddess
I was only human, made of flesh and muscles and nerves
And blood.

She was not cruel
She was as loving and as compassionate as I was
She opened the book and began to tell me what was awaiting me
The book was just a ritual, it was all inscribed there
But she being as smart as I was, needed no book.
She knew it all by heart.
And so she told me,

She told me that anguish and agony and suffering would sit by my side for months and months and for years
She told me that there would be little room for beauty and for joy, they were departing
She told me that there would be no way to be rid of anguish, agony and suffering. And that grief and loss and desperation would come along with them.

I cried and protested when I recognized what awaited me. Hopelessness too, would sit amidst us. I wanted to pull my hair out and I scraped through the flesh of my face with my finger-nails.
I threw myself onto the earth and begged her to change my fate. I told her i would give her an arm, a leg, an eye. I would give her my life now.

She shook her head and her eyes became sad and deep like mine. She told me that I would sit with them all and that over the years I would know them so well. "They will no longer frighten you."

"No", I gasped and cried, the cries being wrenched out of a place within me that I had never known. "No. I want life. I want love. I want beauty and joy and dance and peace and birth. I want life by my side."

She shook her head again and her brows were creased and worried. "You will survive all of what you see."

"NO", I shook and raged " I do not want to survive, I want to live, to celebrate, to create."

And she looked at me and smiled. I saw all that I was to lose and all that I was to suffer. I saw months of agony and desperation. Years of loss and grief. I told her to take my life now. To end it all now.
"You are a Goddess. You can do it. Give me a potion or a pill. A mushroom. Help me end it now. "

She looked at me again and told me that she and I could sit for just a bit longer. I cried and cried and she stroked my hair.
And then she told me "When you are in the furnace, in the chambers, on the alter, being burned and tormented you will not forget your sisters that sit beside you. And when you realize that you can walk and talk again your journey will begin."

"What journey?" I cried out." There will be nothing left of me. And my father? And my mother? And my brothers? What of them?"

And then as though to offer solace, she said "Creativity will live beside you until the day you die. She will speak for you and through you. She will testify. She will teach. She will demand to be heard. She will not survive without you. Compassion, you will survive it all."

And then she kissed me and I let her for I knew that Destiny was not evil. She came to warn me so that I would not lose my self.

Without Compassion all the sisters that I loved and longed for would be lost.

I stayed by that river.

As she had told,
The burning flames devoured and devoured and devoured
As she had told,
My cries for mercy
went unheard
devoured devoured devoured

Tuesday, May 3, 2011

Holding Your Hand; please don't leave me






art therapy workshop, 2011


Feeling a lot of pain and utter exhaustion, trying to hold the strands together. I just came back from the second 'Art Therapy' meeting. It was good. The three of us work nicely together with a lot of compassion and empathy. I am so sad. My father's condition breaks my heart over and over again and I feel so depleted, almost paralyzed. Today in the group I worked on cutting and pasting a drawing. My father and myself are holding hands, I am encouraging him to walk with me into the tulip garden. My father. Abba, I will always be your little girl. I feel this physical longing for him, as though a part of me has been pulled out of my body, and without this part I find it very hard to get out of bed.
I am sorry Abba that this happened to you. I am sorry. I will visit you tomorrow and hold your hand like in the picture.

Monday, May 2, 2011

Aphrodite's Garden








Aphrodite's Garden

In Aphrodite's Garden you will find a little girl playing in the sand.

She builds a castle for her and her beloved.

In  Aphrodite's Garden you will find a dancer. Wherever her small feet touch earth, a bud blossoms, a flower blooms.

There is a frog that croaks in the small hands of the child.

And a woman with large breasts the color of warm sand.

You will see collections: shells from distant shores, beads of all colors and shapes, stones and jewels.

There is a woman there who watches over the collections and binds pieces together. She has a giving hand and all her sisters wear her makings.

In Aphrodite's Garden there is much dancing and much singing.

There is a celebration.

Welcome

Welcome

We are dancing to the moon, dancing to ourselves.

Come join, the water is warm and clear.

In Aphrodite's Garden we meet.

We tie flowers and corals into each others' hair and whisper sweet nothings into each others ears.

We giggle, haunted like children, calling to the stars to fall into the palm of our hands.

And they do

And then we twist grass into a ring and tie the stars onto each others' fingers.

In Aphrodite's Garden the Great Healer resides in the base of the thousand year old tree.

Her hair is as long as the ocean shore, her wrinkles as deep as the ocean's bottom...

When she touches me...

I know that I will meet you all again

That I will meet my All again