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

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

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?

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

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.

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

Goodnight lovers, Goodnight Survivors

So, I led services tonight at temple and this always gives me energy, spiritual and communal energy to keep on plugging away at this life. I am memorizing 'The Song of Songs' by heart so that I can start the Friday night prayers with beautiful poetry. Yes, beautiful love poetry. Poetry about our yearning for love and for God and for intimacy. I am looking forward to memorizing the third chapter by heart and reciting it next time I lead services. The beginning of the third chapter speaks about the search and the quest for love; the finding and the losing and the expectant faith that it is somewhere. Oh, how I connect to the search.

We had our first Art Therapy workshop on Tuesday and it went well. I will post some of my drawings here but only once we finish the workshop. It is five weeks long. It was important for me to draw and to see the same drawings that I drew when my body was my torture cell. It was important to be able to draw this and to see it when I was not alone. There is something healing about being with others who are grieving and processing. Something about being together in this makes it easier to carry. Both of the women who are with me in the group are sensitive and caring. It was also an interesting challenge for me to be facilitating and participating at the same time.

My father is in the hospital again and this breaks my heart. Why is this relevant to my blog and to pudendal neuralgia? My father fell into a very deep depression or had a nervous breakdown. For months he could not sleep from anxiety about me. He watched me suffer and was helpless in the face of my despair, anguish and pain. He used to "walk me" (get me out of the house to see the life outside). On these walks I would talk about my desire to die. Must a child live for the sake of their father if their pain is unbearable? I asked him these type of questions often. I wanted to be granted the right to die. My father sunk further and further into his own despair. He lived in constant fear of losing me and became more and more helpless.

There is only so much that I can share out of respect for my families privacy. I tend to be very open so I am sure that I have shared more than my family would appreciate already. But I feel that it is important that I share this information because Pudendal Neuralgia devastates and destroys individuals and their families. Oh, there are so many 'if onlys' in this story and each 'if only' is more painful than the next. I try not to think this way anymore. But, 'if only', 'if only' the doctors would have taken me seriously in the beginning. Oh, 'if only......'

So there is so much pain and trauma and my father is suffering from severe anxiety and depression and probably from (undiagnosed) ptsd. He still cannot sleep without medications.
The Song of Songs is one of his favorite. I live his love and his deep friendship and faith in me when I recite it. My Abba (father in Hebrew) is a gentle, kind and compassionate man. He has always been so proud of me and so trusting and curious of my ways. When I got this condition I felt like a failure as a daughter too. I could no longer make him proud. I could only make him sad. And now he thinks that he is worthless as a father because his depression and suffering only make us sad. Oh, but love goes much deeper then that and many hearts beat together in one soul. That is what love does, it binds souls together so that they become one. I have learnt this from all this suffering because we suffer each other's pain.

How many friends do i have that are willing to suffer with me?

All i need is a few.

i know what love is, and i know that loving hurts
tomorrow i will visit my pops and maybe together we will read the next chapter of  'The Song of Songs.'

Goodnight lovers, goodnight survivors.

Sleep Well