CHRONIC PAIN PATIENTS'VIEWS AND PERSPECTIVES II

Soldiers often have no choice when they are courageous.
But Chronic Pain Patients choose daily the courage to
'endure the unendurable'.
They are the true heros.

BY SABAISM
(Beverly P.)
March 2001

Pain......It HURTS!

From Paul
March 2002

As I read through some of the postings in this forum this evening.... I only look and see just how much we all face each and every day with our struggle in surviving with pain.
It reminds me of some topics we recently talked about at a chronic pain support group meeting last spring.
With many of us, CHRONIC PAIN robs us of our ability to earn a living, because we do not have the stamina or strength to work. It takes away our identity, because when we are unable to work, we loose who we were. Our society often defines who we are by what we do. When we say, I cannot work because I have chronic pain, a look comes over the face of the person who asked me the question, and says, "oh, you are one of those" and because I/we cannot say that I/we are an accountant, a carpenter, a surveyor, or what ever, it implies that I am a nobody. This hurts.
When you cannot look after your family in the manner we once were able to, or always wanted to, we feel guilt. Sometimes, we may feel like a failure, and that perhaps we just don't matter as much anymore, THIS HURTS.
When we go to our doctor complaining about our pain, and he/she tells us to get a hobby, go on a trip, get new friends, ou realize he/she does not understand our pain. He/she even thinks you are making it up. Then they suggest you should see a psychologist, or psychiatrist to find out what you are trying to escape from. Then you feel like you are not being taken seriously, or worse, than that, you are not believed. This HURTS!
When you eventually find a doctor who diagnoses chronic pain, and are referred to the pain clinic, you have a spark of hope. Maybe there is help for you after all. Then you find out you have to wait two years to be seen at the pain clinic, you think that you will jump off a bridge if you have to wait two year. This hurts.
When you finally accept that you have chronic pain, and it will never go away, you try to adjust your thinking. When your spouse or close family member suggest you should try harder, or try to ignore the pain, you think that they think, I am fabricating this pain. This HURTS.
Society does not understand chronic pain. Many physicians do not understand chronic pain. Some do not even believe it exists! This hurts.
You do your best to educate your close friends and family about how the drugs work, and you do the best you can to make life for yourself, within the bounds of your chronic pain. You feel isolated much of the time, but you attend self help programs, support groups, and you do your very best. You approach the government to look at the problem of chronic pain, and try to do something about the very long wait at pain clinics, your government answers, "there isn't enough money at this time,", this hurts.
One of the most difficult things to handle with chronic pain is the grieving process that occurs when you loose your job, and your accepted way of life. You have lost the person you used to be. THIS HURTS.
As you continue to live with chronic pain, you learn a great deal about yourself. You also learn a great deal about your friends, family and society. Life isn't fair, and particularly for people with chronic pain. Chronic pain is an INVISIBLE disability, and because it is invisible many people don't even know it exists. When the government or insurance companies do not listen to your requests, and you feel you are being brushed off, you suddenly realize you are in this all alone. THIS HURTS.
Chronic pain people require many medications to control pain. They do not take the pain away, but reduce it to a level that you hope you can tolerate. You know that if you do something extra, or stay on your feet too long, walk too far, you will pay for it with increased pain. You learn to budget your energy, like you budget your money. This is only a limited amount. THIS HURTS.
The medications are expensive, and some people who no longer work cannot afford to purchase the medications. They go without or find an alternative. Unless you have a good drug plan, you cannot afford to take the medications. This really hurts.
You have been struggling to get by on a reduced income. Your doctors agree that you should be on long term disability. They complete the forms and you submit them to your pension insurer who replies, that their medical officers do not consider you disabled, and that you should be able to work. This hurts.
These are just some of the feelings we have to go through, living in chronic pain.
We suffer a great deal, not only from the pain, but from the pressure and expectations that society puts on us. This HURTS.
May God give us the courage and strength to go day to day while living with this disease.

From Joy
August 2001
It really is upsetting to think a wonderful medicine like Oxycontin is getting such a bad rap because of people MISusing it. Several of my friends who know that I receive opiate treatment have contacted me re: the Oxy matter. These are people who truly love me and want my pain treated after seeing me suffer for years.
The first thing I do is point out that the deaths are caused by using the medicine in a manner that was not intended by the manufacturer. If the instructions say take the prescription pill with water - do not crush or chew, and a person takes it like they are supposed to, they are not dropping dead. The people who are dying from Oxy are people who will not use the medicine as it was intended to be used. Many of them, as the papers have even said, were using other drugs (cocaine, alcohol, heroin, etc.) then they added oxycontin, making a lethal cocktail. Who should be surprised that they died? It would be more surprising to do this and live.
These people chose to play doctor and pharmacist, breaking the law, by the way. So WHY, I ask, should the people who are taking the medicine as they should be penalized so greatly?
If we were to use the "Oxy-logical" method when thinking and talking about Oxy and discontinuing it because of deaths from misusing it and apply that same logic(?) to other areas of our lives, we would have much to lose.
People inhale all kinds of products like gasoline, however, it would strike anyone you asked as highly ridiculous to ban gasoline because some people have died sniffing it. They used it in a manner that was not intended by the company making the gasoline, so why haven't the companies that make gasoline been sued, made to stop supplying gasoline and made to pay extremely high amounts of restitution to the family of people who have died from sniffing their product? Shouldn't all of us be willing to walk everywhere and give up the use of cars, trucks, trains, planes, boats, lawn mowers, gas grills, hot water, home-heating appliances, stoves, etc. (I think you get the point). Using "Oxy logic", this is what would be done.
People die from alcohol poisoning everyday. Why haven't the distilleries been shut down, made to pay families of all alcoholics who die using their products? Who would agree that everyone should be penalized because some people misuse the product?.
Guns kill people everyday. I'm not trying to start an issue here or debate on the gun issue, but I am just trying to show how stupid it would be to stop the manufacture of guns just because some people misuse them. Not so long ago, a gun was a necessity for getting food. If that was still the case today, should gun use be eliminated because some people have misused them or used them in a way that was not intended by the manufacturer?
People have beaten their kids with belts. Were the manufacturers sued because the parents abused their child? Why doesn't everyone have to stop buying and wearing belts because of this?
Glue is a good thing, but when it is sniffed and causes a death, using "Oxy-logic", shouldn't the manufacturers be sued, have to stop making glue and pay millions of dollars to relatives of the people who die from sniffing it?
I could understand it if this was a medicine that had been taken according to the prescribed method, and was causing deaths that the manufacturer should cease making it, however this is not the case. What medicine could we take? Name one that hasn't been linked to death. Take the use of cold medicine as an example. If I drink the whole bottle of NyQuill and die,shouldn't they be sued? I find it hard to think of one medicine we would have use of if "oxy logic" was applied. Aspirin, Tylenol anyone?
If I throw a huge cup of hot coffee on someone and they die, why not sue the manufacturer of the coffee. Afterall, if they didn't make coffee, the person wouldn't be dead. Take coffee away from everyone! So what if this causes millions of others out there drinking coffee to have to suffer it's loss? Heck, let's use "oxy-logic" and also sue the cup manufacturer and the water department (and Mr. Coffee Coffee-Maker) and stop the manufacture/production of these items and penalize everybody.
It is time to blame the people who abuse the product instead of blaming the product itself. I used to take Oxy, however, I followed the instructions and never crushed, sniffed or chewed it (nor did I use alcohol while taking it). I didn't have any life-threatening problems with it. Why? Because I used it as it was intended to be used. Crushing, chewing and sniffing oxy releases the entire dose of medicine into a person's system at one time. It was intended to be released over a 12 hour period of time. A person's dosage of oxycontin is gradually tritated upward until the maximum level of pain relief is achieved using the lowest possible dosage. This is done under the supervision of a physician. People who are dying are dying because they choose to dump a 12 hour dose of medication into their system at one time, taking dose after dose after dose in one sitting.
Imagine something as benign as a person taking 2 aspirin a day for 1 year. That would equal 730 aspirins. Now, think of taking all 720 at one time. I would expect to die, wouldn't you. This is what is happening with the misuse of Oxycontin. You repeatedly read that the person took dose after dose after dose, crushing and chewing and sniffing Oxycontin, thereby, dumping dose after dose after dose of strong medicine into their bodies at one time. How is this Purdue's fault? Why make it unavailable or difficult for everyone else to benefit from Oxycontin who use the medicine correctly?
Almost everything you can think of has been used to cause a death. Should manufacturers have to stop making any product that was misused and a death occurred? Should they be sued? Should everyone else suffer and lose their rights to a product because of other people's misuse of items?
Another important issue here, is the people who are dying from Oxycontin are not playing by the rules. That is no reason to penalize those who do play by the rules.
If people would just use common sense (instead of Oxy-logic) where this is concerned, they would know that Purdue isn't responsible for the deaths, because the medicine was not used as it was intended to be used. It is the user's fault, not Purdue. It is truly an atrocity that Oxy is getting this bad publicity, because so many lives have been saved by oxy and the quality of life improved for those who follow the rules.
Since the removal (or severely restrictive prescribing) of OxyContin would cause untold numbers of death, then, if anything, Purdue should be sued if they refuse to continue producing the medication.

From Lin
August 2001
For so many years, I remained "politically inactive"....for that, I am ashamed. Now that I know what it is like to try to "live" a life with chronic pain, I wish I would have spent some of all that wonderful energy I used to have on political activism. Now, I am truly exhausted, trying to continue working, and fighting this battle of the CFS that won't go away. I agree with you regarding educating the people who pass these laws so that perhaps they might have a slight understanding of what living with untreated pain is like. To not only battle the "disease", but to also feel that we have to "fight" just to get pain management, seems so very unfair.
Reading posts from people like Bob who are treated with such disrespect makes me so angry! Thanks for helping open my eyes to what I can do to help this sorry, sad, situation. I watched the news tonight and saw the footage of that plane that was shot down with the Mom and baby being killed in Peru... (Ed. note: Peru http://www.freerepublic.com/forum/a3ae187f52c22.htm) All for perhaps stopping one illegal shipment of "drugs". They had it all wrong. Wrong, wrong. Their error cost human lives!! How dare they act so pious about Oxycontin, and the other medications chronic pain patients need to live their lives with some degree of respect! Sorry,, I didn't mean to rant and rave,, I just wish I still had some of that wonderful energy that I took for granted in the days of my life before CFS and fibro.

From Mishkyn
August 2001
The DEA singling out Oxycontin has scared us all. And why? Why Oxy? We know addicts will just turn to something else, figure out a new trick.
They never went after glue manufacturers, or the makers of aerosol cans, or the dozens of items produced by major corporations people are able to "use" in a new and imaginative way, or combine with some other ingredient to get high.
The DEA has had one abysmal failure after another against illicit drugs, several of them mighty embarrassing and well publicized. They have been helpless to stop the flow of drugs into this country, and there are addicts begging for help with no available facilities to go to. They need a "victory."
Doctors' are a notoriously conservative group. We've all heard stories of them not turning in one of their own when they had clear evidence (often several times over) of malpractice or botched procedures. It is the rarest doctor who will even mildly criticize another dr's care or treatment.
So on one side, we have these physicians', threatened with losing their licenses/livelihood, and on the other side we have patients in terrible pain, generally emotionally, physically and spiritually exhausted, (and often financially as well)...what kind of fight are they (we) going to be able to sustain? The DEA spots a weak target and zeros in. And pharmacies are brought in on it too.
Many drs are quickly caving in from the posts and articles I have read around the web. Imagine what pressure must have been brought down on Chrissy's dr for him not to admit to writing the Rx.
Are they going to march on Morticians now? (Ed. Note: Addicts Caught Using Embalming Fluid
http://more.abcnews.go.com/sections/us/dailynews/embalmingfluid010727.html) There will always be something else for addicts. What will there be for us?
This "battle" is mind-boggling and stupefying. Whatever politics is or isn't, it certainly is competitive--among and between individuals, and various branches, departments, etc.
I am of the belief that the DEA thinks they need to WIN this one. And this looks to be their easiest choice. They don't explain, they roust places, use threats and intimidation, and promise retaliation against complaints.
Just been ruminating and thought I'd put it out. Any thoughts?
Best to all, we WILL win this one.

THIS IS A 'MUST READ'
From Bekki
August 2001
Skip and friends... At first I was not going to write about this because I do not want to bring any more unnecessary pain to the family involved, but I really feel like I need to share this with you all. There is a BIG lesson to be learned here...
This past Friday, my friend's father passed away. He has been ill, diagnosed with cancer... but it was NOT the cancer that killed him.
He was a strong man- born in Eastern Europe, he overcame tremendous odds and knew how to deal with adversity. He survived communism, he survived war; overcame economic crisis, and other tragedy... he was NOT weak. He took his family and immigrated to the Unites States so that they might have a chance at THRIVING-- at LIVING. And they did just that. He was a very successful family and business man here in the States. He was the foundation of the family. And he was enjoying now his grandchildren and was even (in his 60's) taking on bicycling as a recreation. And then he was diagosed with cancer.
Now... we all tend to believe that CANCER PATIENTS are treated more appropriately-- that THEY will be kept comfortable no matter what. That the diagnosis of cancer gives them some sort of "rights" to decent healthcare and pain control...Well, if we believe this, we are all DEAD WRONG.
Because, as a DIRECT EFFECT of inadequate medical care- and VERY INADEQUATE PAIN MANAGEMENT ... he TOOK HIS OWN LIFE! -- and YES he even had insurance-- I'm not mentioning names, but we all know of it--- CROSS my heart- and we'd all think that the "approved" providers [doctors] would be TRUE to their oath)-somebody BLUE smoke in some eyes, there...|
He was ushered out of ER's, told that, "You have cancer, sir... you are just going to have to LIVE WITH THE SYMPTOMS"... he went from doctor to doctor that were on the insurance plan... and he was told similar things. He then went to physicians OFF the "list" and told them he would pay CASH... he just wanted to be TREATED... they said that they "could not" treat him.
He was in a TREMENDOUS AMOUNT OF PAIN...DAY IN AND DAY OUT... and to say that his PAIN MANAGEMENT WAS INADEQUATE would be an UNDERSTATEMENT... and THIS A CANCER PATIENT!!!
He tried INSISTING that they treat him... and it fell upon DEAF EARS. WHY??? WHO, in this KNOWN pain-UNfriendly state, would be SO AFRAID as to NOT TREAT A MAN DYING OF PANCREATIC CANCER who was suffering so horribly??? Well-- I guess a LOT of doctors were unwilling.
This saddens me in ways I cannot even express. This man COULD be managed... he was NOT end-stage yet! But, he had to travel some 30 miles to a neighboring town's ER who would AT LEAST give him IV's to REHYDRATE HIM (the local hospital claimed that they would NO LONGER DO THAT even-- WE ARE TALKING ELECTROLYTES HERE--FLUIDS!!!) Imagine the PAIN this man suffered.
Being a "pain patient" myself, I KNOW full well the desperation that untreated, unrelenting pain brings. I have myself experienced 'suicidal levels of pain', and I have been "shrugged" as well...But I do NOT, CAN NOT fathom what it must have felt like to be him. And, in a moment of sheer torture, he decided to end it all, himself.
He did NOT plan this, he was NOT depressed or suicidal! HE WAS IN PAIN, and no one would help him. He wrote a note to his loved ones, and went into the garage, and shot himself. To that poor man, in unimaginable pain, it was the ONLY WAY to rid him, and his loved family, of the terrible burdon.
I feel guilty and condemned as well. I am close with his daughter. I was her birth coach when her baby was born and one of the few friends of hers that this tough-as-nails-on-the outside but sweet-marshmallow-on-the-inside man approved of. He was SO protective!
And-- I feel that I let him down, let them ALL down... because I KNOW he did NOT have to LIVE and DIE that way!
I DID send him pages of e-mails -- and ASKED him to PLEASE PLEASE visit this site... but now, I feel so bad-- I should have helped out a little more. I simply did not recognize the LEVEL of despair. I KNEW ASAP and the COMPASSIONATE DOCTORS could help him! But-- I should have insisted more. I HAD THE KEY...
Skip, please pass this letter on to the other chronic pain patients here. (I know it is long, sorry) We ALL have the information THAT CAN HELP SAVE A LIFE... please, everyone--reach out.
Sure, I told him-- but he was so miserable-- I NEEDED TO HELP him perhaps, just a little nudge further-- he was being STOMPED on by the medical community at EVERY TURN... so, my words, my e-mail, just were not enough.
And, looking back- I will NEVER EVER forget the look in his eyes the last time I saw him... a man in wrenching pain... covering it, as usual, to be strong for everyone else. And a man who NEEDED something that I HAD.
I cannot guarantee that he would be here this moment if I had helped him get the care he needed, he had a strong will and I do not know fully his mindset. But-- he wasn't a depressed, suicidal man. He was simply a cancer patient who was slipping through the chasm of untreated pain, alone.
So... perhaps his death was NOT for "nothing", because there is a STRONG message here. For ALL of us, painers or not.
***IF YOU KNOW THAT SOMEONE IS IN PAIN...WHETHER IT SHOWS OR NOT...WHETHER IT IS CANCER OR NOT...WHETHER THEY ARE CRYING OUT FOR HELP OR NOT...GET THEM THE INFORMATION THAT THEY NEED TO BE TREATED ADEQUATELY...WHETHER THEY SEEM STRONG ENOUGH TO DO IT THEMSELVES, OR NOT!!!***
Ask how they are, listen and try to "read between the lines" a little-- I honestly believe that he simply DID NOT BELIEVE that the pain would ever let up.
But... THERE IS HELP AND HOPE... and people-- WE know where that help is! Skip has brought it to our eyes, and WE need to pass it on! Let us be INSIGHTFUL, caring, PERSISTENT, and brave enough to empower others as well, before it is too late for another victim of untreated pain.

To the Editor,
The Oregonian
Floyd Regarding "Respect patient confidentially" (Aug. 16), I'm sick and tired of this insane drug war contradiction between government's war on some drugs but not others, such as "medical marijuana." Make it all legal, pot to heroin, or let's stop messing around and become a drug war police state, once and for all.
We should either stand up to government as a free people and declare enough is enough. Or surrender the Bill of Rights and admit to ourselves, as a nation, we just could not handle individual liberty. It was a nice idea, sounded good on paper, but in the end the people were just too stupid and/or apathetic to keep it and make it work.
After all, when it comes to personal choice on drug consumption, isn't that exactly what the government's currently suggesting?

From Noah August 2001
The problem is, these aren't logical individuals in the DEA. If they were, we would not be having to fight just to keep from losing our medicine.
They are like MCcarthy and his war on the Communists. Did he stop after somebody named a few of their close friends? No, they lost their livelihoods, and he went after the next batch, starting w/ the people named by the last people.
The DEA will take any victory we give them, call it their own, and continue to attack us like we were the enemy. Well we are not, and we should not concede ANY freedom or liberty to these NAZIs w/ guns and black paratrooper garb, they are guerillas, not doctors or medical professionals of any sort. We pay THEIR salaries. Not the other way around. We should not have to concede anything.
If more people in pain can benefit from this miracle drug, I say let them have access to it. If kids gain access to them to abuse them, I hate to say this, but it is safer than street smack. I may get alot of disagreement here on this issue. I certainly do not condone ANYBODY, UNDER ANY CIRCUMSTANCES using oxys in that manner (or any manner which abuses a controlled substance, but since it will be done regardless of what we think, it might as well be done w/ the minimal risks to the user.) Unfortunately it also puts our medicine at risk. (I do not know why they attack Oxy, and leave MS Conitin alone, its the same thing only w/ morphine, but I do not want to give em ammo to start smearing MS Contins like they do Oxys, so I'll shut up). Anyway, kids shooting up street smack today have to worry about it being cut w/ rat poison, glass, all sorts of crap, not to mention getting killed trying to buy it, no wonder so many turn to shooting pharmacueticals like Oxys, instead of expensive, 3rd or even 5th rate street dope.
This is not to condone or to complain, but I think we should keep focussed on who the bad guys are.
The DEA is the ones trying to scare our doctors and take away our medicine. They do not consider our being nice and conceding to them as us being nice and conceding. They see it as one less obsticle towards wiping out all cotrolled substances (look how they treat their own when wounded w/ gun shots and trauma, w/ MOTRIN!) And that's what they'll have you treating your pain w/ if you continue to let them trample over our rights to our medicine. Lets talk of ways to get more oxy-contin to the people who need it 1st--there are still thousands upon thousands of chronic pain sufferers who still cannot get access to proper care, then after everyone is pain-free and not sufferring and/or contemplating suicide b/c they can't get their medicine, well then we can all go right ahead and sit around and talk all we want about who we think they should take it away from or make sure cannot prescribe it, but for now, let's not give another inch to the DEA, they've taken miles of rights and freedoms away from us already.
That's just how I feel. It is early, and I am a bit cranky, I haven;t had my methadone yet, so I might be agreeing w/ you in an hour. Anyway, I'm not knocking anyone's idea or suggestions, please do not take it as such. I just really hate the DEA and would love to see em all out of jobs really soon!

From: Bill Allyn, President, APLCDC or "AppleSeeds"
To: The Washington State Bar Association
BCC To: Everybody

Dear Sirs,
I saw a headline on CNN last night that the Washington State Bar Association has made a statement that the War on Drugs (Users) is a Failure, causes crime, is harmful to health, and bad for our civil liberties. All true, of course, but in regards to this, I have a favor to ask and a question:
1. (The Favor) Please send me the exact press release that I am refering to.
I am VERY interested in reading it in its entirety, as I am President of the Anti-Prohibition League of Chelan and Douglas Counties [APLCDC or "AppleSeeds"]. Send it to [email protected].
I looked on your site, as well as CNN.com and found nothing (Except WSBA President Jan Peterson's couple of paragraphs on the hypocrisy of the DrugWar--very nice. Why did he wait until he was leaving to state the truth in his "parting shots" article? Is speaking the truth illegal nowadays, or is it just VERY unpopular with the people who pay a good portion of your salaries, Big Business, Big Tobacco, Big Alcohol, and Big Pharmaceutical MegaCorporations?) Thanks in advance.
2. (The Question, and please don't take this the wrong way...)
Why, after 30+ years of helping to persecute, incarcerate, and enslave millions of Americans, aiding and abetting the commission of what I would consider WarCrimes and Grievious Crimes Against Humanity, and pilfering billions and billions of dollars from millions of poor people, are you now, suddenly, changing your mind, and turning your back on the DrugWar CashCow�?
Forgive me for being skeptical, but have you found some way to make money off of drugs being decriminalized? Or did you just _suddenly_ gain a Sense of Ethics and Morality that were previously not present? Not that a lawyer having ethics hasn't happened before--it was, after all, a team of lawyers that sent alcohol prohibition packing, and it was plenty profitable as well...--it just seems as rare as hen's teeth these days. It's not that I don't appreciate your newfound wisdom and ethics, I'm just wondering why the change in direction, and why now?
Sincerely,
Bill Allyn ([email protected])
President, APLCDC (Anti-Prohibition League of Chelan and Douglas Counties)
and Assistant Webmaster of The Constitutional Patriots Opposing Prohibition.

P.S. Question for today:
Why is it that ALL 700 billion patentable, profitable man-made drugs are perfectly legal and considered "good, safe drugs" after only 6 months of testing, while ALL NON-PATENTABLE God-given, God-manufactured Natural drugs such as Cannabis, Opium, and Coca are illegal and considered "bad drugs" after being tested and used safely since long before the dawn of modern man?
Why?
Because:
"If a medicine is one, cheap- and two, effective- and three, non-monopolizable- it will also be four, illegal."
Follow the Money, Stupid.

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