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?