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

[John Carter]

The whole PNE experience has been particularly evil cause even though i found a cure for my specific PNE but it has been willfully denied to me.... I think it is worse than having PNE and never knowing there was a fix for me... I have been kept intentionally in this torture chamber just cause of the medical politics that are a perfect storm for this decade that i have been brutally crippled....

This hell is just so ridiculously cruel i just want to be done with it one way or another... Even though i went through insane hell and found a cure it doesnt matter to this medical community... It is cruel and unusual torment beyond the the reach of comprehension to people without this condition... It is so rare for a PNE patient to get healed but the fact that I found the exact spine nerve root that controls ONLY the entraping muscles and being Denied again and again the right to be cured is so insane I should be a raving lunatic... but i am not... Comprehending a decade of Enforced torture due to medical politics is such a evil curse to bear.... I wish my neighbor hadnt found me near death a year ago and taken me to the ER... Was the complete whit light experience and for me it was as if the Universe was basically telling me everything was alright and that my torture was at a end and then I was forced back into this Fight at that evil ER... I wish i could leave my body to medical research for this condition but we dont get that right like cancer and other deadly disease victims... My case is a rare form of this rare condition.... Was caused in me by a abnormality in how my last vertebra fused just on the right side into my sacrum.... The right transverse process calcified and grew down into the sacrum over my lifetime till i was 25 when my PNE was finally triggered.... The process basically formed a bone jack that caused my body weight to be transferred more on the right side... this made the pelvic muscles grow out of normal alignment...

For me i discovered long ago that when my 4th Lumbar Dorsal Nerve Root is blocked from sending it's signals to the pelvic muscles my entrapment is 100% released... I have probably had the root temporarily blocked with lidocaine or marcaine close to 100 times... When it is blocked right for 4-6 hours i am completly human with no motor control loss/// In me the root just controls the entrapment muscles and in me these muscles do absolutly nothing but the entrapment// Walk fine and all other control is left intact.. With no detrimental loss of function.... I have had the nerve root burned by rhizotomy close to 30 times... The very first time the root was burned I was Cured Completely for a whole month.... Then the root grew back... It became immune to being burned after the first time... all the subsequent rhizotomies could not stop the nerve from sending the entraping tensing signals to the muscles in the pelvis.... I have begged for a neurectomy to try a more permanant cutting off of the entrapping signals but medical politic in america have made that impossible since the 90s.... did what several pudendal doctors said and had 3 major pudendal surgeries.... I think since the cause of my condition is so uncommon and extreme the surgeries were not effective... Spent everything on them and seeking them.... There is alot more to tell but this is my basic case... Just passed a whole decade with this since i was crippled my Senior Year in college 1 semester away from graduating when i was 24.... Had to stuggle to survive on just 600 social security dollars a month for years and years... More like Social Limbo... Too young to get more help and since i went to college right after highschool i didnt have the time to build up the work years to recieve more that the basic pittance... It all happened too early and too late in my life to get the help regular people recieve... A perfect storm of calamities... Is a curse to have this in Texas... I had to Diagnose myself before getting to the pudendal doctors to get the PNMLT to show how much the nerve is choked off.... I found the answer on the internet like so many about a year into the entrapment.... Surgery in California Arizona and France.... Several other surgeries like the amputation of the right transverse process that caused all of this to relieve intense sacroilliac joint pain caused by the Bone Jack... If a simple xray had been read right earlier in my life and this grinding fusion released it all would of been avoided....

[John Carter]

Forgive any grammatical errors of this English Major... A decade of torture has fried my brain... Have been cut off from medicine since November and cant get any compassion in this dark state.... I am only staying alive by drinking heavily for the first half of the day when my mind is most awake as that is when the pelvic muscles are held in extra tension... Only a fatigued brain allows less tension of the pelvic muscles... Was only getting 2-4 hours at best cause the pain wouldnt allow me to go asleep and it woke me up just a few hours later... Sleep Deprivation torment caused by the nerve torment..... If i could restart my journey i would just of gone to doctors in other countries where neurectomies could still be gotten....Almost got it done in Poland when i went to see my Ex... But the 4th of the 4 doctors that would be involved chickened out... That was when i ran out of my war funds and have been one poor ass cripple ever since... Trapped in Texas one of the worst states to have this condition or any chronic condition....

[John Carter]

Hello to Violet and others that i havent seen since the boards i used to post on were shut down... Went by Atrox back on them.. old call-sign... posted on two board that went down for a long time and lost contact and hope also... Just been in financial and medical limbo for years... Wishing things would progress.... Things have only regressed here in Texas though... in 2015 they passed draconian laws that required you to go to your doctor every month just to beg for medecine to survive for one more month... Have been even more fatalistic than this condition already made me since then.... They just passed more laws intended to preasure doctors to be more harsh toward chronic pain... Our disease is classed as chronic where I see it as terminal in many cases... The Term being how long our willpower to fight against unspeakable odds can last out... I know in my case i am only here cause of the 100 times i was cured for 6 hours and the one rhizotomy that temporarily cut the nerve root signals to the entrapping muscles for a 1 month 100% cured state.... Nuts a nerve can become immune to conservative efforts like a rhizotomy.... Neurectomies are extreame but in my case atleast are worth any risk involved... I really dont know how much longer a guy should be expected to live totally crippled on $6000 a year... And now with no medecine... The only good thing about that is the lessed constipation which any multiplies the entrapment beyond human endurance... So i am really not eatting at all anymore... One very small meal a day... I only eat enough to dull the hunger pains... just drinking now to cause the brain to send less tension signals to the muscles involved in my entrapment.... Dragging things out to absolute limit... Just following the orders of my ex to fight this to my last breath.... Was a much harsher forced promise than she could ever imagine though.... A war without reward... A fight with no end... Enforced suffering by the medical community which wont grant me my hard learned remedy.... Knowing that blocking the 4th Lumbar Nerve Root controls just apparent useless pelvic muscles has been as much of a curse as a discovery... Why know your cure when you are not allowed to have it... Is a bitter pill indeed... Hard Won knowledge that i am not given the right to act upon.... Will copy and paste from the other board i was posting on.... A year ago when i came so very close to passing i had a Ultimate near death experience... I wrote it up very well on facebook.... DMT is a very spiritual experience... You know you pain is bad when the brain is suffering so much it say " Ok Turn on the White Light Juice." several weeks ago now i got my second taste of dmt... Just a fraction compared to when i was puking to death a year ago... But after i came down off of it i knew it was it for sure.... Shows just how extreme our condition is when the brain thinks the pain is so much we must be dying///// Well later all fellow warriors... Soldiers of Suffering i think of us... Here in america we are warriors... Surving long with this makes you one... There is a war against chronic pain sufferers being waged ruthlessly.... We the Strong as only the strong can last with this are penalized by the Weak that give into abuse of pain medecines.... I have completly had to detox all alone and it is Nothing to me... The Fight against the pain makes whatever addiction withdrawls feel like a walk in the park... Just more proof of our fight being a matter of massive willpower....

[John Carter]

Will post one more thing... There was a shootout here at my exact location except on the ground floor while i am on the 3rd.... Am right above a playground... So some crazy dopehead opened fire on my downstairs neighbor for basically telling him to stop yelling about whatever drug deal he was transacting//// We are in a fenced apartment place so this guy had no escape if he had thought for one second... Well one of the many bullets actually went through this neighbor's apartment and hit a innocent hispanic girl next door... I didnt know any of this at the time but as soon as the shooting started i grabbed my revolver and started running down to get in the middle of it... I was acting on instinct but now i know for sure why i did it... I was looking for a honorable end... This gunfight provided me with a chance to seek a honorable way out... Everyone else was hitting the deck praying for their lives while i was running down the stairs, running towards the fire fight... Sadly it was all over in a few seconds so I got down there when it was all over... My neighbor shot this crack head who riddled the apartments with bullets.... If he hadnt though i would of chased this son of a bitch down and got him or he would of got me... After being shot he stumbled out and bled out right next to my truck.... I had no fear... I have said many times that if the army would give me pills and set me down in a watch post in Afghanistan or Iraq i would fight to the death to defend one of our bases.... I got some hardcore proof that that is no idle boast... I want a decent end... I am no quiter... I do want a end to my war though... A war way worse than any other i have ever studied in history.... A unrecognized war but one all the same....

[John Carter]

i hate how everyday i am sick to death of the thought of just waking up.... the second thing i think everyday is how i cant stand to start moving cause that kicks off the days torture.... Now since i have no medecine the only thing i can do to combat the tension signals sent to the entrapment is to start drinking pretty damn soon and i totally hate alcohol... I hate it with a passion... is the amrican way though.... just trying to drag everything out to the next dr appointment even though i know the chances are they are worthless.... ten years has felt like a lifetime.... is crazy to believe but i am actually jealous of the other possible diesease to have... not much could trump this one.... I look at most all of the others as being far kinder to their victims... sure they destroy lives also but usually at some point the also end the suffering too... not PNE though... the way i almost passed a year ago was basically caused by the deprivement of any sensory input except suffering... So after a month with nothing to do but stare at a wall since where i was at had no internet my consciousness had just had enough.... That triggered nausea which triggered throwing up which resulted in just dehydrating to near death... Slow way to go.... But when the white light kicked in it was euphoric to say the least...

[John Carter]

starting to really lose weight now... terror of food is a effective diet... only got like 30 pounds of weight to possibly lose... got a flat stomach again now... the terror diet... horrendously efficient... look for it in the stores now.. can be found wherever the war on chronic pain sufferers is being waged now... lol

[Violet M]

Hi John. Yes, I remember you as Atrox. It sounds like you are really having a rough time right now and I'm sorry you haven't found the perfect cure yet. I have no idea even what to suggest that might help you. Have you talked to any docs about neuromodulation? There is a doctor named Ken Alo I've heard of in Texas who is supposed to be an expert in this area.

You are right, it seems to be more and more difficult for people with legitimate chronic pain issues to get the medications they need. I heard something on the news today about a database on people who are using opioids for chronic pain. Sounds a little scary.

Violet

[John Carter]

thanks V.... will look that doc up...phew... i am getting drunk as hell to counter the pain.... just like the carter family.... is monsooning here....just ate my ration for today.... One regular tiny mcdonalds burger.... and that is the only thing i eat in a whole day.... guess i am lucky that before all of this that had a small stomache... i am the kind of guy that never ate at a buffet... cause i could never get my moneys worth... now here i am eatin the minimum to reduce the entrapment... will be a stick figure before long... a damn sexy stick figure though lol... B-)

[Violet M]

Well, at least you still have a good sense of humor and that's a good sign.

Violet

[John Carter]

dr ken alo... another doc that is all the way down in houston.... a long long way away.... impossible trip right now.... If i can survive for another 2 months i "Might" be moving down to austin... houston will be alot closer from there... I am always amazed i just make it for one more month now.... Forced to starve myself now to avoid the many times multiplied entrapment that comes along with any meal... am very weak... flat as a board again thanks to that diet... clothes falling off me.... would be nice if this mattered to any doctor round here..... very high level of dont give a damn goin on now with the new anti chronic pain laws.... aimed at any doctor who's compassion would allow them to care bout our predicament.... just caught in the cross fire between the government and the doctors.... i am a fighter or wouldnt be here a decade later....
Has been plenty hard enough just surviving at half the poverty level.... I really dont know may people that could of lasted for so many years without a dollar to our names.... That is just another part of the condition we all fight against.... Would be nice if there was a commune somewhere for us guys... Since a huge part of the condition is interpersonal relationship complications.... A very familiar refrain ... It takes one to know one could be the Universal PNE motto.... Understanding is what we yearn for... Probably the biggest obstacle we all face.... I completly understand how it is that way... Existing in our own universe is just how it goes.... Us relating to real world vs others relating to us..... I get how it all is... Never gets any easier to swallow though...