Curso of knowing my exact cure but medical politics deny it.

[John Carter]

This is a explanation email i sent to my sister.... Just trying to describe what this condition can do to someone.... It has been a long decade of nothingness.... I am going to move to the beach in florida right next to Cape Canaveral.... I am going to swim out into the ocean and live with the dolphins lol hahaha B-)


I am just so exhausted of the nothingness existence.... I am tired of a life with no meaning in it.... Just being medicated and when not in torture temporarily when it is possible and nothing to fill it except games... when i could play them... I am deprived of the drive that gave my life meaning before i got sick... I became a machine for bending the future to my will for a life of endless cultural experiences.... I start all these sentences with I and it looks bad but that is what is deprived to me..

There is No Me... The flesh and blood me is still here.... But the ability to do anything with my life has forever been barred to me.... I am just a prisoner... All because the medical community took it all away from me... I discovered my cure in the first year and learned it would save me in the second... But i was told by the doctors that were supposed to be the experts that i had to be butchered again and again and again... Sent on never ending pointless Odysseys.... To nowhere... I went everywhere to nowhere.... The freaking experts wouldnt do the one thing that mattered...

So going through them to fix the problem at the source but all those surgeries were impossible because my cause is something none of them ever saw and so they have no real idea how to fix.... Only my way which fixs the problem at the source by stopping the root nerve that controls the worthless muscles that cause this.... But they are all too stupid to do what is logical... All the other doctors did those countless rhizotomies because none want to take a chance.... CAUSE none of them KNOW...No doctor in the world KNOWS.... None of them... None of them know that this nerve root doesnt control anything important... when it was blocked literally a 100 times it had no bad side effects... cause it controls nothing but 1 or 2 meaningless muscles... But since the pudendal nerve controls everything that goes on with the genitals they dont understand that this root has nothing to do with that....

Doomed to a prison worse than any that exists in the real world.... A perfect sadistic disease that allows me to look human but that tortures me if i would try to do anything.... It is so insanly evil satan himself couldnt of created something so evil.... The ONLY good experience i have had is when i almost died... The first time i felt at peace really in my life... I really cannot remember anything from before being crippled.... It is only a world that another me was in in a parallel dimension.. So the first time and only time i have know peace was there at the edge between being technically alive and looking into a glorious world that was not what we think of as death.... It was not dying... It was acceding... elevating into a form of being that was multidimensional... Far beyond the three dimensions... A world opened up that cannot be understood with our minds in this reality... I want to cry because i was not allowed to join with that power that encompassed me and answered all my questions as to why i had to suffer with this so hard for so long... I can not remember the answers because i am a mundane being again... there at the edge i was joining with a universal power that welcomes you like nothing any religion here comes close to relating the truth of..... Pure Peace... Pure Acceptance of something so beautiful... A contentedness that is beyond any words...

I was ripped away from that in the most evil of hospitals up here... They pudendal tortured me away from that Light... jamming a catheter into me again and again and again and again.... and since that made my muscles seize up it turned those signals into the same as a red hot poker.... Soi had to fight them off again and again and again and again untill they left me alone... And this is how i was robbed away from absolute freedom back into a prison of flesh that is a billion times worse than death... I dont want bits of peace... fleeting respites between unspeakable torment.... Never ending confinement trapped within myself.... A place far worse than any prison that has ever been dreamt of by the evilest people in history...


Saying i am exhausted doesnt come close to explaining the reality of how tired i am... i am tired of being "I Am" i dont want to be... when being is the worst fate a person can have in the history of our race..... I never could of done anything in a million years of stuff to deserve this.... All those people that dream of punishing Hitler or Stalin or all the worst of people could not pick a worse fate than the one i have been existing in....

I only want to go to that light that gave what pure peace to me for a fleeting time.... gave me freedom from this Hell beyond anyone's nightmare of the worst of hells..... This is the fight i am trapped in....Hell cannot describe it.... There is no human term to describe this....

[John Carter]

sent that pic Violet thanks...

[John Carter]

Please dont anyone on here get the wrong idea.... I am not crazy.... I do not have any mental problems except the distress caused by the pain and it's consequences.... This however does not change the fact of how a lost life has affected me as a person... I dont feel like a human being... I can not really be the person i was before all of this... The good guy that i was is trapped inside this Prison of this condition.... A hostage to the effects of the disease... especially after my epic near death experience it is hard compare how at peace i was then and the never ending war that is living with this King of all Maladies...

Jei Carter

[John Carter]

Just got Bitch Slapped only imaginable to fellow PNE sufferer by another sadistic Pain Doctor... I knew they were going to still be as evil as they were years ago.... Wasted my time... listened to me... then said well i wish u well in your travels... walks out the door and the nurse just brings a neurotin script... motherfuckers.... They cant imaging the rage i control when they bitch slap a PNE patient so hard... mercy to anyone but us... we get the mercy last... All i wanted was help living until i try to get to florida... big fat waste of hope that is... i dont get any hope up anymore after it being shot down countless times... specially since i am the only damned pne patient to ever find one little nerve root that only controls the crippling entrapment... I wont let them lock me up like they continually try to trick u into saying... wont let them do that to me again.... those hard beds in those mental places are just pure hell... man JPS bitch slapped me so hard.... I wish i could say how i would make a stand for all us sufferers... but i am not allowed to say what i would do... I would get some recognition for us though.... Since they just expect us to suffer in silence.... expect us to take their bitch slaps like we are crack whores or something.... How much and how many times is a good decent compasionate guy supposed to endure the Unendurable... I have turned the other cheek more than a regular human can comprehend.... Many of you guys know the experience sadly... only we do though... Someone should make a stand though... Since so many of us are just expected to quietly die in agony.... Why would it matter if one of us said enough is enough.... What gives them the right to treat us like animals... To insult us worse than someone should ever put up with.... I called them all Sadistic Monsters.... Said Fuck all you Medical Demons.... That is letting them of light however....

[Violet M]

John, I understand your frustration but keep in mind that doctors are under a lot of fire these days for prescribing opioids to patients who are addicts and not legitimate pain patients. I believe you are a legitimate pain patient but let me just say it is very off-putting on the forum when you use obscene language. Some of us on the forum aren't used to obscene language so it's hard for us to know exactly how to respond to you. We do care and we can relate to your pain but would appreciate it if you could tell us how you feel without all of the f-bombs if you know what I mean. Sorry, I'm just not used to it.

When you go in to see a doctor you have to be careful about the way you approach them. I don't know how you speak to your physicians but if you want them to help you out, you do have to be careful in your approach to them. So while I do understand how difficult it is when physicians won't prescribe what you want, you have to understand that they have to deal with a lot of patients who really are just drug-seekers and their job is very difficult because they can be sued or lose their license if they prescribe medications inappropriately. So you have to approach them, understanding where they are coming from too. I agree, from my experience, there are some who really don't care but by far most of them truly do want to help. We just have to be careful how we approach them.

Violet

[nonsequitur]

You need to build a relationship with a doctor if you want opioids to be prescribed. You will then get submitted to random tests to prove your compliance.
I reckon it will become more and more difficult with the new 2016 CDC guideline.

Gone are the days when you would get a 30 day supply of Hydrocodone for a root canal.

[John Carter]

I related my condition completely to these people in a comprehensive and civil manner.... Explained how i was tortured to the extreme extent that my brain decided it had to shut down as it reached it's torture limit... They acted like they understood.. But it was all a act... everything that they pretended to understand was just a well formulated act they give to patients now.... " I wish you well in you travels" then giving one useless script that will do nothing when i am begging for my life... When i have had to wait for this appointment since i was cut off from medicine in NOVEMBER..... This was the appointment that a poor person here would depend upon to save their lives... I got a death sentence today... Because our condition is medically unrecognized and specifically persecuted due to Ignorance.... So getting appointments that i will have to wait for another 3 to 4 months is the same as a death sentence...

I understand that some of you dont like harsh language.... It is nice that you maintain some composed sanity while enduring Genital Torture.... How many veterans of a decade long prisoner of war isolation torture camp are as civil as i am.... Many veterans who suffer traumatic stress disorders are far gone.... Countless of us sufferers experience trauma that is as bad as the worst traumatic experiences is the darkest corners of history.... I understand that this board's role is in providing Hope... I am thankful that you let Victims express far more than forums like the health unlocked forum that doesnt let people express the reality of this disease....

You see that i dont cuse virtually all the time... Now my family is trying to move me to florida to try to get help from a medical community that might provide more treatment... also i am going to go try to go see my old dr that moved to south carolina... the one that kept me alive for almost 5 years.... he was the one and only doctor in 500 miles that i found in a decade that was willing to keep a Pudendal Nerve Patient Alive.... the only one.... I have been to countless...

Now technically alone i received a for sure death sentence today... Not a setback.. not a wait and see... A 100% Death Sentence... That is simply the truth.... My Sister and Father are going to help me move to florida and get me in with as many doctors as possible... But as far as the area of the north half of Texas and Louisiana ,Arkansan, Oklahoma poor pudendal patients are now just expected to die in silence.... Dont complain... just take the unendurable is the law here now... Our Condition is not Recognized as Anything... Now You are expected to be crippled... pennyless... homeless... unmedicated.... untreated.... to die alone in utter misery with no HOPE... No Help... Our Condition Here is the most Persecuted ever in the history of illness.... We dont get a exception to the laws meant to stop simple drug addicts... We are Lumped in with far lesser chronic pain conditions... Make me human again and chop off my arm or leg or whatever... That is far more endurable than the most sadistic genital torture disease.... The person trapped in this flesh prison was a very optimistic hopeful lovable guy.... He has been in isolation 24 7 torture prison for a decade now.... How sane would u expect a prisoner just in isolation for a decade to be.... That would be a dream compared to how this disease destroys the person that we were.... I am still a good guy... Still a condemned prisoner though.... I wish fellow sufferers would respect the truth of other patients situtions.... I am all about finding help and hope and improvement.... But a medicaid patient here is not allowed to find help with doctor that might help anymore.... we are just expected to expect absolutely nothing.... I have had enough of nothingness.... I am going to go and try to find help in another state.... But if i hadnt convinced my family to help finally I would be expecting to die in one way or another right now... that is just the facts of life here.... be nothing and have nothing and expect nothing.... How is a PNE patient supposed to survive like that....

[Violet M]

Thanks, John for that post. I understand it can be hard to think clearly when you are in pain cause I've been there before.

If you can get in with your old doctor that would be great. I'm glad to hear your family is willing to help you with the move. Is your condition something that can be treated with a neurostimulator or have you ever discussed that with the docs? Or what about a pain pump?

Violet

[John Carter]

thanks v... i still have the only neurostimulator battery in me from 2006... that shocked the whole pelvis and did confuse some of the signals... but the vertebra bone jack that caused my PNE cause the scoliosis curve in my spine to... and the area to shock the pelvis required the metal leads to be put right in the middle of the curve... those signals made the already hellish back pain nuts... they tense up the tissues in the spine.. made it feel like i had a brick in the middle of the spine instead of a spine... was insufferable... when i had to go get fillers super mri i had to get the metal taken out... havnt missed it since... even with the electrical frying of the pudendal region... had to turn that thing up to 10 max just to help anyway... and the more i turned it up.. the more solid the spine brick became... that was what a pain doc expected me to live with... just cut out the nerve root whatever risk instead... i know nothing but risk,,, am risking my sanity with every breath i continue on with this.... will try to go see that atlanta doc that is doing cryoablation... and try to get it to the L4 root not the pudendal.. cause my pudendal is fine.. just the muscle that pulls the right and correspondingly the left that is killing me...

[John Carter]

i would love a pain pump.. no luck with that in the last decade though... is a central south problem i am sure