Recovering from a spinal cord surgery which so far has increased my pain, I cannot access the deer trails in the nearby wood. Now, with the reading of your thoughts, I am reminded of why I yearn so much for what is unreachable for me right now. For that unseeable yet tangible thing that for a fleeting moment, yanks away the pain and the 24/7 thoughts of pain and replaces it with a full spirit and an ease of mind. I call it “feeding at nature’s trough.”

once more, thank you. To be understood is a mighty thing.

http://www.jcb.org/cgi/content/full/159/5/747

When I was young, I believed that lightning zapped down from the clouds to the grounding force of the earth. Then I learned, in actuality, lightning propagates from the ground up to the clouds.

I have felt that the words that most help me to get my point across as to how CP affects us (as if anyone will listen) is to say, “An event of CP has immediate access to the brain.”

Now you tell me CP begins in the brain! I accept your learned words as truth, but once again, the ol’ brain has let me down. CP takes on the lightning personna and our brains, the source. Why am I not surprised!

Barbarians? Oh yes. My own experience with a neurologist proves the point. As I described my symptoms and the fact that Neurontin, which he prescribed, was not helping, he got up and walked out the door, saying, “This could ALL be emotional.”

He knew, as did all of my other doctors, that my C1 vertebra had “exploded” into four pieces just 9 months earlier. Did he think to MRI the thing to see what shape it was in when I complained of increasing neurological symptoms? No, the quick assumption was that my pain was “emotional.”

Suffice it to say, I had to wait 3 more years and travel 3000 miles to see a doctor who cared enough to MRI my Cspine and find my C1 still hugely broken and widely gapped apart.

So, how have we progressed since the barbarians roamed the earth, or do they still, only these days, they charge $500 an hour?

great article, thanks

BEWARE the psychiatric “labels” that might be applied to you, dear friends. I recommend getting a copy of EVERY office visit notation written after you have visited a physician. The laughter/giggling of nervousness or embarrassment or shame could be labeled as “hypo-manic” “manic”, “inappropriate”, or lead the physician to suspect a bipolar disorder.

In my case, I sometimes simply cannot speak - the pain is so “unspeakable”. So, if I am lucky, some “premedicating” with an opioid MIGHT blunt the pain enough for me to communicate with a physician and *try* to describe my current state. And, when I CAN speak, I speak with an urgency that a physician might deem to be “pressured” speech, which is a HALLMARK of bipolar disorder. See where I am going with this?

Luckily (I suppose), a more enlightened psychiatrist brushed aside the idiocy of the “bipolar” tags and came up with ….. ICD-9 diagnostic code 309.24. “Adjustment Disorder w/ Anxiety”. That particular diagnosis is “code” in the psych. world for “typical person going through a very, very rough time”. That diagnosis doesn’t carry the “stigma” of some of the other psych. disorders but INSURANCE WILL USUALLY PAY for services for individuals w/ adjustment disorders.

Finally, if you are well enough (& blessed enough)to be able to RESEARCH your condition and advocate for yourself, be CAREFUL that physicians do not label you as “obsessive-compulsive”. SURVIVAL behavior can appear to be obsessive-compulsive to the untrained eye. As mentioned above, DO get copies of every single office note written and don’t allow any idiotic psych. labels to follow you to any other practices.

I won’t go into the story of the neurologist who yelled at me for using the word, “allodynia”. Evidently, the gent doesn’t like his patients to possess a modicum of intelligence.

Wishing you some peace,

Caroline

But how can that be???? We are the BIG DADDY OF THE ENTIRE WORLD AREN’T WE??? WE CERTAINLY PRETEND TO BE???? WHY THEN DO WE PASS LAWS THAT ALLOW DOCTORS TO INJURE AND EVEN KILL THEIR PATIENTS FROM MEDICAL MISTREATMENT AND PROHIBIT THE PEOPLE THEY HAVE ABUSED TO SUE FOR WHAT IS RIGHTFULLY THEIRS. THE ANSWER IS OBVIOUS THEY HAVE PAID YOU GUYS OFF TO INSTITUTE A LAW TO PROTECT THEM. I HAVE PRAYED TO GOD TO HELP ME GET WELL ENOUGH TO ENTITLE WRITE A BOOK , I WOULD ENTITLE “00DR. LICENSED TO KILL/ AND MAIME”. FOR AS SOON AS THE US GOV. PASSED A LAW THAT STATED DOCTORS COULD NOT BE SUED AFTER TWO YEARS FROM THE DATE THEY TREATED YOU, THEY BETRAYED EVERY CITIZEN IN THIS COUNTRY INCLUDING THEMSELVES. THEY MIGHT AS WELL HAVE TIED US ALL TO A CROSS, AFTER THAT TWO YEAR LIMIT-(THAT WAS SUPPOSED TO PREVENT “FRIVOLOUS LAWSUITS”). LET ME TELL YOU LADIES AND GENTLEMEN , IF YOU HAVE THE AUDACITY TO CONSIDER YOURSELVES DESERVING OF EITHER OF THOSE TITLES HAVING PASSED THAT LAW, THAT ANYONE WITH A FRIVOLOUS LAW SUIT IS FEELING WELL ENOUGH TO SUE RIGHT AWAY, TIME LITMITS DO NOT STOP “PHONY LAW SUITS, BECAUSE PEOPLE WHO ARE NOT REALLY SUFFERING IS NOT STOPPED BY THEIR PAIN FROM FILING A LAW SUIT, IF THEY ARE PRETENDING TO BE IN PAIN THEY CAN SIT IN A COURT ROOM, STAND ON LINES AND JUNP THROUGH ALL THE HOOPS NECESSARY TO SUE. BUT THOSE WHO ARE ACTUALLY IN “REAL PAIN” CANNOT. LET ME TELL YOU I COULD NOT SIT AND STAND AND DO WHAT IS NECESSARY TO SUE THE DOCTORS WHO HARMED ME IF THERE WAS A STAKE OF A HUNDRED MILLION DOLLARS WAITING FOR ME IF I DID. I’M SURE I WOULD TRY IF THAT WAS REALLY WAITING FOR ME…. BUT THE PAIN I AM IN IS SO GREAT THAT THE AMOUNT OF TIME NECESSARY FOR ME TO SIT AND STAND FOR DAYS ON END IN COURT ROOMS THAT IS NECESSARY, WOULD HAVE ME LAYING OF THE FLOOR AND PEEING IN MY PANTS, I COULDN’T DO IT . ONCE I WAS INJURED THAT WAS IT, I WAS NO LONGER A FUNCTIONAL HUMAN BEING. THOSE DAYS ARE GONE AND THE DOCTORS I SAW MADE SURE I WOULD NEVER GET THEM BACK AND THE GOVERNMENT THAT HAS BANKRUPTED ME WITH THEIR HIGH TAXES AND LACK OF EVEN THE HOPE OF ANY DISABILITY AID-(AS A LAWYER TOLD ME, AS MY SOURCE OF INCOME WAS RENTAL PROPERTY THAT MY ILLNESS HAD ME UNABLE TO HANDLE, MADE ME INELIGIBLE FOR DISABILITY, THAT DOES NOT SEEM RIGHT TO ME, BECASUE I GREW UP WITH THIS GOVERNMENT PRETENDING TO BE A LAND OF OPPORTUNITY, WHERE BECOMING A BUSINESS PERSON WAS ENCOURAGED, I THOUGHT THIS WAS SUPPOSED TO BE A
LAND WHERE “CAPITALISM” WAS THE PHILOSOPHY. WITH THE GOVERNMENT RESTRICITNG THE “MINI-CAPITALIST” OR “SMALL BUSINESS MAN OR WOMAN FROM SHARING THE SAME RIGHT THAT THE INDIVIDUAL WORKING ONLY FOR LARGE CORPORATION ELIGIBLE FOR DISABILITY” IS THE SAME AS ADMITING THAT THIS IS NO LONGER A CAPITALISTIC GOVERNMENT, THAT IS SUPPOSED TO PROMOTE ANY INDIVIDUALS RIGHTS TO TRY TO BE A DONALD TRUMP ETC. OR JUST RUN A CORNER BAKERY,”WITHOUT HAVING HIS/ HER RIGHTS TO ‘DISABILITY’ BEING PAID TO HIM OR HER IF HE OR SHE IS INJURED ALONG THE WAY AND CANNOT MAKE IT. JUST BECAUSE WE WERE WORKING FOR SOMEONE ELSE RATHER THAN BEING A BUSINESS PERSON OURSELVES WE ARE DEPRIVED OF “DISABILITY BENIFITS”. THAT IS OUTRAGEOUS, THAT IS “NOT A SOCIETY PROMOTING CAPITALISM” IT IS ONE PROMOTING LARGE CORPORATIONS OR OTHER LARGE BODIES OF UNITED GROUPS THAT CAN PAY THEM OFF TO PASS A LAW LIKE THEY DID. THEY HAD TO HAVE BEEN PAID OF BY THE AMA-(AMERICAN MEDICAL ASSOCIATION) IN ORDER TO PROHIBIT PATIENTS FROM SUING DOCTORS WHO HAVE HARMED THEM OR EVEN KILLED MEMBER OR THEIR FAMILIES. THAT IS “NOT ” A GOVERNMENT WHO GIVES A “D-MN” ABOUT ITS’ CITIZENS. AND TO DENY THE LITTLE , SMALL BUSINESS PERSON “DISABILITY ASSISTANCE WHEN THEIR SUFFERING ON THE GROUND THAT WERE NOT WORKING FOR A LARGE CORPORATION OF SOME SORT, RATHER THAN BEING A SMALL TIME CAPITALIST, TRYING TO PRACTICE WHAT THEY TAUGHT ME IN SCHOOL , WAS WHAT THIS GOVERNMENT WAS BASED ON, IS NO LONGER WHAT IT SET OUT TO BE. IT IS NO LONGER A CAPITALISTIC SOCIETY, BUT IT IS NOT A SOCIALIST SOCIETY BECAUSE IT IS THE “ONE AND ONLY SO CALLED CIVILIZED SOCIETY THAT DOES NOT PROVIDE SOCIALIZED MEDICINE TO IT’S PEOPLE. IT IS PRETTY OBVIOUS WHY NOT, AS ANY GOVERNMENT WHO WON’T ALOW IT’S PEOPLE TO SUE DOCTORS FOR WRONGFUL DEATHS AND LIFE LONG SUFFERING, DUE TO THEIR PLAIN OLD IGNORANCE AND INCOMPETENCE, LACK OF GIVING A SHT, THE LIST GOES ON OF REASONS WHY THE DOCTORS GOT TOGETHER, CALLING THEMSELVES THE AMA AND PAID OFF THE GOV. OFFICIALS. ONE THING FOR SURE IS THIS CERTAINLY NOT THE GOVERNEMT I WAS TOLD IT WAS, WHEN I WAS GROWING UP, GOING TO MY UNITED STATES GOVERNMENTS PUBLIC SCHOOL SYSTEMS. I have been in chronic pain, from back and neck injuries that were improperly treated from day one(through mis-diagnosis, bad advice and bad , bungled surgeries) and instead of being, RELIEVED OF ANY RESPONSIBILITY . WHEREAS, IF THEY WERE HELD ACCOUNTABLE AND ACUTALLY KNEW THEY MIGHT FACE ANY PENALTY AT ALL THE UNIVERSAL DESIRE OF “GREED” THAT OVERTAKES THEM , WHEN THEY DECIDE TO “PRACTICE” ILL CONCEIVED OPERATIONS, MIS-LEAD PATIENTS BY TELLING THEM THEY CAN GO TO A PAIN CLINIC FOR YEARS INSTEAD OF HAVING THE SOURCE OF THE PAIN RELIEVED, WITHOUT ANY PERMANENT DAMAGE TO THEIR NERVES. TO LET LITERALLY MILLIONS OF ELDERLY PEOPLE LIVE THINKING THEY HAVE ALZHEIMERS, WHEN THEY ACTUALLY HAVE AN EXCESS OF SPINAL FLUID IN THEIR BRAINS , WHICH COULD BE RELIEVED WITH A SIMPLE SHUNT BEING IMPLANTED BY A MORE SKILLED PHYSICIAN AND LET THEM LIVE WITHOUT BEING ABLE TO SPEAK, WITH THEIR FAMILIES SUFFERING, WHEN A SPINAL TAP MADE THEM FUNCTIONAL AND SPEAKING AND MOVING AROUND NORMALLY AND WHEN THE SPINAL FLUID ACCUMULATED AGAIN THEY WENT BACK TO AN ALZHEIMER LOOKING PERSON, WITHOUT TELLING THE MANS FAMILY THAT HE COULD HAVE HAD A SHUNT PUT IN TO MAKE HIM ABLE TO FUNCION AT A HOSPITAL JUST A FEW MILES AWAY. SURELY HE KNEW THIS, BUT THE FAMILY DID NOT. SURELY THE DOCTOR WHO TOLD ME TO WAIT TO HAVE AN ARTIFICIAL DISC , INSTEAD OF A FUSION AND GO TO PAIN CLINICS FOR YEARS INSTEAD, KNEW THAT PERMANENT CHRONIC PAIN WOULD RESULT FROM THE CONSTANT IRRITATION FOR YEARS TO THE NERVES, SURELY HE SHOULD BE HELD ACCOUNTABLE
FOR HIS ILL ADVICE. SURELY THE DOCTOR WHO TOLD ME , THAT I WOULD “NEVER” GET OUT OF PAIN AS IT HAD BEEN TOO LONG, DUE TO ALL THE OTHER DOCTORS , DELAYING THE PROPER SURGERY, THROUGH ILL ADVICE OR WEIRD OTHER PROCEDURES AND IN APPROPRIATE SURGERIES DONE INSTEAD, WILL CAUSE ME TO SUFFER EVERY MINUTE OF EVERY DAY FOR THE REST OF MY LIFE. SURELY THAT DOCTOR DID NOT HAVE TO FORCE ME TO WAIT TILL THE LAST PATIENT OF THE DAY,-(AS HE WAS ANGRY THAT HE RECOGNIZED MY NAME AS SOMEONE WHO WAS GOING TO SEE HIM A YEAR BEFORE)-OBVIOUSLY HE PURPOSELY MADE ME WAIT AND THEN AFTER TELLING ME MY WAITING TO HAVE THE PROPER SURGERY, WAS GOING TO KEEP ME IN PAIN THE REST OF MY LIFE , WITH NO POSSIBILITY OF ANY RELIEF, SURELY HE DID NOT HAVE TO IMMEADIATELY AFTER TELLING ME THIS WALK OUT OF THE ROOM AND LAUGH WITH HIS NURSE AS LOUDLY AS THEY BOTH COULD, WITH THE CLOSE PROXIMITY OF TIME TO WHAT HE HAD TOLD ME, COULD HAVE ONLY BEEN A SADISTIC ACT ON HIS PART. -(IT MADE ME ALMOST WALK OUT INTO THE STREET INFRONT OF A BUS WHEN I LEFT).

SURELY THERE SHOULD BE SOME SORT OF CODE OF ETHICS THAT WOULD FORCE THE MEMBERS OF THE MEDICAL PROFESSION TO AT LEAST TREAT THEIR PATEINTS AS IF THEY WERE ACTUALLY PART OF THE HUMAN RACE, FOR IF THEY DID ANY OF THE THINGS THEY DO ON A REGULAR BASIS TO AN ANIMAL THEY WOULD BE IN HANDCUFFS.

At the beginning I visisted one pain center after another, that were filled to overflowing with patients, getting steriods injected into their spines and having steriods handed out like candy.
I waited for hours amidst the crowds of people in agony. ONE MAN TOLD ME HE HAD BEEN GETTING SHOTS AND GOING TO PAIN DOCTORS FOR EIGHT YEARS, I WAS ONLY THREE OR FOUR YEARS INTO AGONY AT THAT POINT AND I SWORE I WOULD NEVER LET IT GO ON FOR ME LIKE HE DID.
“BUT I AM AFRAID THAT WAS NOT TO BE MY CHOICE.” I READ LIES ABOUT BACK INJURIES WRITTEN BY BONIFIDE SPINE INSTUTES;LIKE THE TEXAS BACK INSTITUE, THAT RECOMMENDED, LITTLE SURGERIES BEFORE BIG ONES ON SOME PAGES AND THEN CONTRODICTED THEMSELVES ON THE NEXT PAGE. WHAT WAS I TO THINK . THERE SHOULD BE SOME WAY OF KNOWING WHAT IS THE CORRECT THING TO DO, SO THAT PEOPLE WHO , IF THEY HAD HAD THE PROPER CARE WOULD NOT HAVE ENDED UP AS HOPELESS CASES, SUFFERING CONSTANTLY AND ENDLESSLY IN A STATE WORSE THAN ANYONE HAS EVER DESCRIBED HELL TO BE LIKE. WHEN THIS COULD HAVE BE AVOIDED, WHEN MY FATHER COULD HAVE BEEN ABLE TO SPEAK TO US NORMALLY WITH A SHUNT, AND JUST BECAUSE THE SELFISH DOCTOR WAS UNABLE TO DO ANYTHING BUT A SPINAL TAP TO MAKE HIM NORMAL BREIFLY AND DID NOT HAVE THE ABILITY TO PUT IN A SHUNT, SURELY HE SHOULD HAVE BEEN HELD ACCOUNTABLE TO TELL US OF THE SHUNT AND WHERE WE COULD HAVE IT DONE. THERE IS A SMALL GROUP, THAT IS NOT AMPLY FUNDED, WHO ADVERTISED ON TELEVISION THAT UPWARDS OF 25% OR MORE PEOPLE ARE SITTING IN NURSING HOMES MISDIAGNOSED ALZHEIMERS, WHEN THEY COULD HAVE HAD A SHUNT PUT INTO THEIR HEADS SO THAT THE EXCESS SPINAL FLUID WOULD RUN OFF AND THEY WOULD BE ABLE TO THINK AND FUNCTION , AS A MAN I MET LATTER TOLD ME HE HAD DONE AND WHERE AND WAS A HAPPY MEMBER OF A FUNCTIONAL FAMILY. THERE IS A RESPONSIBILITY BEING IGNORED BE THE MEDICAL COMMUNITY THAT SHOULD BE CONTROLLING THE BEHAVIOR OF THESE DOCTORS. SO THAT THEY ARE NOT JUST THINKNG OF THEIR PATIENTS AS SACKS OF MONEY TO LINE, THEIR POCKETS, BUT AS HUMAN BEINGS. I AM WATCHING A MOVIE NOW ABOUT THE CIVIL WAR ON TV IN THE BACKGROUND AND AM SEEING SOLDIERS TREATING WOMEN AND BABIES OF THEIR OWN COUNTRY WORSE THAN THEY WOULD A BUG TO STEP ON. IS THIS HUMAN NATURE AND THERE IS NOT ONE SPECK OF HUMANITY LEFT IN OUR RACE??? SURELY THIS COUNTRY SHOULD BE A LEADER IN PROPER CONDUCT, WE CERTAINLY BULLY ALL THE OTHER COUNTRIES DOMINATING THE WORLD WITH OUR WEAPONS, UNDER THE PRETENSE THAT WE ARE THE EXAMPLE OF A “TRULY GOOD KIND SOCIETY” AND NOT TO TREAT IT’S CITIZENS LIKE INSECTS. BEFORE I HAD THE BURNING STABBING SHOOT AGONIZING PAIN I HAVE, FROM BEING IGNORED BY DOCTORS , NOT FOLLOWED TO BE CERTAIN MY CARE WAS PROPER. I HAD NO IDEA OF WHAT REAL AGONY WAS, AS BACK AND NECK PAIN THAT HAS SPREAD TO EVERY PART OF YOUR BODY IS INVISIBLE AND WHEN I SAW OTHERS WHO COMPLAINED OF PAIN I THOUGHT IT WAS NOTHING . (AND IN MANY CASES IT IS JUST BOUTS OF PAIN THAT SOME PEOPLE HAVE OCCAISIONALLY). BUT FOR THE MILLIONS IN AGONY LEFT TO LOOSE ALL THEY OWN AND DIE IN AGONY IN THE STREET, AFTER HAVING A LIFE WITH EVERYTHING TO LIVE FOR , THAT COULD HAVE BEEN HAPPY, ONE THAT THEY COULD CONTRIBUTE TO, INSTEAD OF SUFFER IN, IS THE MOST UNFARE AND INSENSITIVE BEHAVIOR OF THIS GOVERNMENT. CHANGES ARE NEEDED FAST, BEFORE MILLIONS MORE FALL INTO THE PIT OF CONSTANT PAIN .