Support Group On Facebook!!

So, the support group on facebook is great! People really try to help each other out and there is so much room for questions and sharing of experiences. (what worked/did not work). You enter your facebook, search for pudendal neuralgia support, ask to join the group.....and yippie, you make a lot of new friends in an instant. Friends that understand!!!! (which reminds me that i have friends that understand with their hearts. you really don't have to suffer in order to understand. deep caring does the job too.)

Ummmm, i spent the day at the lake. The feeling of being "less than" goes with me everywhere. It is hard losing that sense of security with myself. I really appreciate the comment that was sent in response to my 'i am worthless' post. I could call it the 'ode to the self-centered non-existent I' post. I am reading three books at the same time, trying to internalize the Buddhist truth of the non-existent 'I'. But my sense of  'less than' is definitely keeping me from enlightenment.

Wouldn't Buddhist monks have developed pn (pudendal neuralgia) from the extensive sitting? I wonder if there is any documentation or knowledge of it. There must be.

As a Drama Therapist in Israel I worked with a wonderful man who suffered from severe schizophrenia. He was in his 60's and was as wise as I was pretty (just kidding). He used to look at me and say that he was 'Fakakt' and then he would burst out into a deep fulfilling laughter. In Yiddish 'Fakakt' means something like 'done with, no good anymore.' His laughter was contagious and I would laugh into his laughter at the absurdity of it all. How could my wise teacher be 'Fakakt.'? Deep down I believe that we all know that we are worthy and that our lives are precious. I can tell you that my dear friend who suffered and suffered and suffered wanted to live forever. As for me, I always thought that he was crazy, and solely because of that! (joke, i hate the word crazy)

The love that I felt for some of the men that I worked with as a therapist helped me get through some of my hardest pn times. I knew that they were rooting for me. I knew that they had let me into their world and into their suffering because they believed in me, as a fellow human being. They saw that I cared and they got out of bed to meet me. That is the part of me that pain cannot take away. The part that cares. I remember the day that I told my father that i am whole because I worked hard in this life to help and care for others who were in need of this. My father looked at me, asking "What do you mean by saying that?"

He knew that I meant that I was ready to leave any time. I was letting go. I was constantly warning as though my family could get used to the idea of me leaving. As though that could be a fathomable reality for them.

It is almost 3:00 in the morning and I think that I should go to bed. But I am leaking words...

Love,
Atara

It is hot!!

So, I know that I should be going to Dr. Hollis Potter to get the MRI of my pelvis done. But I cannot even get myself to make the phone call. The thought of a four-hour car-ride or a one-hour plane ride is unthinkable right now. I just cannot think this thought. It automatically means suffering to me. I cannot see past that right now. Like, that I could be getting important info. that might help me. I guess that the idea of surgery also scares me. And other than helping the surgeons I can't think of what the MRI would be useful for. Knowing where my nerve is damaged or entrapped would be good info. to have but....

I think that I should do it. Oh, God help me.
I am going to have to talk to myself a lot about this.
I also think that I am crazy that I know that marijuana is a good pain-killer for me and that I am not doing anything to get some. That is stupid.
There is a support group on facebook for us. I am going to check it out again.

Sending Love
Atara

I am worthless because I suffer from a pain syndrome that leaves me in a constant form of suffering and coping. Even when i smile and am relaxed there is always that part of me that is wound up and in deeper discomfort.



My friends are married and giving birth. The only thing that is committed to going to sleep with me and to waking up with me is the pain and the exhaustion.



So, I feel like I am less than everyone else. And I feel like I am definitely damaged goods. I don't work. I have a hard time concentrating. I cannot sit without feeling the knife inside of me warn me that what I am doing is outright bad for my body and my sanity.



It is so easy for me to fall into the "i am worthless, i am useless" pit. I talked to Liati today (my green-eyed angel friend) and as usual we talked about the essence.



Oh, the essence. The essence of me cannot be damaged or less worthy than anyone else.


Dating makes it tough. Maybe I am brave and courageous, only what is it worth if I cannot value my own courage?


NORMAL people. MMMMMMmmmmmmm.
To wake up early and go to work and then to the gym (i want to shout when i write this lethal word) and then to meet friends or ........



Me, I will meet you on the floor of my room. You want to join me? Could be exciting to go out with a chronic pain syndrome. You think?


Sure! Absolutely! It will be a blast! Pass the Lyrica, the Cymbalta, the birth control which doesn't work anymore, the atavan, the opium and belladona suppositories.... while you are busy with those guys I will be here, waiting for you, with some red wine.
Could you make that a joint, instead?
Pass the pain relief please.

Oh, honey, I miss you.
You do?
Where are you? What are you doing?
I mean, What do you do?

Say what?

Oh, sure. I will be happy to lay down next to you. In fact, if I could only get my hands on you!!!!

Darling, if you marry a pain syndrome, you are going to have to work hard. Cuz i will be spending a large portion of my time either trying to sleep, doing deep breathing or sobbing cuz it hurts just a bit too much.

My J-date Profile: Pain.

I have to go water the garden if I want to have one tomorrow.

Love

Sobbing again

It has been a hellish week. Yesterday I spent the day sobbing and sobbing some more. By night-time I was laying on the floor next to the fan with the tears streaming. A small brook formed itself beside me. A gold-fish, a purple fish and a yellow speckled fish swam leisurely, flirting with each other. It did not seem to matter to them that the water was salty or that I was crying. They seemed very happy to have been created. Of course, they do not suffer from pudendal neuralgia and they did not get their periods despite the fact that they are on birth control. Now, you ask, why would a fish need to be on birth control?

Apparently, the whole area becomes inflamed when all that interesting bloody, eggy stuff is going on inside. Which means, that the fish have less room in which to swim. The sides of the brook swell and begin to put pressure on them and....

(no, i am not stoned. in fact i have not been able to get any marijuana since that first and last joint that left me hoping to become a pot-head. And, damn did i wish that i had some pot last night)

As you all can imagine, I am so tired of this life, the one that i inhabit in my body. I am officially exhausted. As for the brook and the fish; the brook dehydrated. And the fish; they seem to think that they are fine here with me. They are keeping me company as my pelvis relaxes.

What can I say for myself?
Honestly, when I cry all day and fight the pain with the tip of my teeth, I feel worthless.
The fish remind me that i will survive, fortunately or unfortunately.

Love,
Atara

Until I heard my mother's cry
I heard the pleading in her voice
I heard the desperation and the hope

Her cries echoed through the waters of pn lake to the next
And I could not pass to the other side

I knew in her voice that I would live
That I had no choice but to continue
The waters traveled in her vocal chords and touched the heart of me
And I separated from the journey that I had begun
And returned to the one that I had left behind

Into the turquoise eyes of my favorite beloved cat
wide and blue and only i knew, how tender
into the eyes of Liat's light green softness
and through my grandmother's hands
and her mother's arms
and then back
back
back
into my living mother's cry
back back back
into my body
back back back into
the months of agony
back back back
into the ambulance
and back
back
back
into the bed
the hospital
malaria
and back back back
into
opening my eyes
and back back back

into terror and anxiety and desperation

and back back back

the ways i have traveled
are not for the fearless
or the brave

the ways that i have traveled
are mine

only mine

Another Post.

I was there
You know
That night
When it rained a bit
When you bought two containers of...
And downed them with the lake water

I saw you smile when you thought about the rats that traveled on the banks of the lake
You liked the fact that the waters were made of rats and geese and everything else that lived and breathed its sustenance
You knew that you were no different
There was no need for mineral water
The lake's water was just as good

You know, I was there, with you
I watched you slide open the garbage door and shudder with the thought of dying there
I watched you pull open the doors to that strange square container
And shudder when you found that it is was full of water
And when you saw the person opening its doors and finding you there, bloated and blue

No, you did not want to die that way
And you did not want to scar any ones mind that way

You wanted a peaceful death
You wanted a beautiful view
You wanted quiet and acceptance by your side

You know, I did not leave you for a second
God damn it,
All those months of hell burning itself into your flesh
with no end in sight
I did not leave you

I was loyal to you
Not like your cousins who saw and knew that you were dying
but never called or wrote
God damn, the pain

I never left you
And for this I give you credit
All the credit in the world
As I watch you struggle through your days

Believing that even if you suffer until the end
And even if your life is far from what you wished it to be

You  can still do what you can do to help the others that come after you

I give you credit
All the credit in the world for this

I suffer, with so much love in my heart, for you.


Two cousins that I used to meet many Friday nights by my grandmother for dinner...
they were in my room last night (dream)

Honestly, this will get me nowhere.
There are things that I can't understand.
Like friends and family that deserted me in my suffering.

I remind myself often that I always have my self. That I will never leave my self. That in the act that could have left my body for the birds and the flies,  I was there. Smiling at the geese, ready to leave.

Hey there

I spent the day at Crystal Lake. In the water! All day! On days like today I want to tell all people that are suffering from horrible pain that it can get better. The water was delicious, as was the sun. I know how I will be spending the rest of my summer.

I also created a piece of expressive art work that looks like another version of  'the scream'. The more I live the easier it becomes to dive into the dungeon of hell and speak from there. Though, still, I live with the fear of what I know, always. It is ever-present in every moment. The memory of the relentless months of torture walks beside me. I am trying to give it its voice so that it won't haunt me and hunt me down. It needs to come out from the closet, from the chains, from the chamber. Is it me? Or is it a monster? Is it the beast or is it the camel?

Whatever it is, it is sedated with drugs. But I know, that take away the pills that I swallow every few hours and once again I will be in the corner wishing I was dying, fast. So, who am I? Does anyone have insight into this question? Who am I if I know that I became pain? Am I enlightened because I know that I am nothing? That my default is self-torture? Or am I everything because I know that I am the pills that I swallow and everything and everyone that went into creating them? I can tell you that I know the meaning of the 'inter-dependence' of all beings. "I" am dependent. And "I" change according to the pain I experience.

I never forget.
I know scattered.
I know shattered.

I never forget.
I am no wiser for this.
The waters are no sweeter for this.
I am just grateful that I don't suffer the way that I used to.

Grateful that the lake is to swim in.
Not to die in.

So, thank you for another day of life.
Another day holding the monster by its leash, tying it to the tree, watching it while I swim and float. Another day walking side by side a tamed monster, hoping that it will stay sedated as I enjoy the water.

We could only go together. Either way, it is together. Nowadays I am stronger then the monster so I lead the way into life.

Die beast die.
But the beast won't die.
I hold it by its horns.
This is the way I live.
Always holding it by its horns.

You can imagine how exhausting it is.

You can imagine how liberating it was to be in the water, for hours. My body was happy today. And when my body is happy I live.

I pray for us all to live more and more, to be free, free, free of pain.
Amen, amen, amen.

Love,
Atara

Pictures

I just took some pretty awesome pictures, the kind that I would not post here. But I will develop them and I think that I am well on my way to having an art project ready for the next support group meeting. (I know, next after next cuz some of us will be vacationing with our beloveds). So, this was an interesting step in the right direction. I used some of the dried (according to my mom), dead (according to me) roses that my mom keeps. I tried getting her to get rid of them many times. Today I am thankful that she did not listen to me. Dead or dried roses worked beautifully. Girls, I gotta tell you: those things that we have down there, you know the ones that the boys are always trying to get into, they really are pretty lovely.

Healing

Healing

Healing

We had support group today and it went well. I missed the girls. I sent us all home with homework. To create a piece of art. On Monday we film again. This time we interview my father. My father says that this is very hard for him. I tell him that it is for the women that come after me. It is hard for me too but I am driven.

I want to do some work through photography and I volunteered a very sweet photographer to join me on my project.

So, how do I show PN without stripping naked, spreading my legs wide open and sticking a butcher's knife up my "pussy" (as the girls call it in support group)?

I am not ready to become a PN porn star. Yet. Not until I have an audience that plans on doing something to help us.

Any ideas?

Goodnight sweet hearts.
I know that there are some very sweet hearts that are with me. Tiny dancers dance and weave their way through my spirit and remind me that I am not alone, not alone at all.

Love

Hi

I feel less connected to my blog cuz I don't think that it is being read. Still, it is my healing journey. I had a nerve block done on Wed. I am spending more time outside now that the sun is smiling at us. I did more gardening and did not suffer cuz of it. I am trying, giving it my best just like the little black kitten that died screeching in my room. My father is not doing well. He is anxious, spinning around himself and us like a draidel. Pain. I plant more flowers. I breath. I smile. I meet new people. I appreciate the lot of good souls that roam this earth.

Goodnight to whoever happens upon these words. Goodnight love.

Atara