Internet Suport Groups-Hypocrisy, dictatorship, and Learning Who you can Trust

"So, you were in jail. You can't be expected for us to approve"
"You're actions may have even made it more difficult for us. The DEA lumps us together you know"
"Maybe you belong on an addiction website. They help people like you, you know"

This intro would not be complete without the piece de resistance-from my first group, in fact. After I posted my experiences, another group member took it upon herself to warn me. I was banned, after my second post. I answered the leader, telling him, among other things, what I had been told. He brought it to the group, with the question, "Am I Hated", where he says How "some woman" had been "going around" saying how unpopular he was on the group(I cut and pasted one line, which was less than a sentence long, from the warning letter), and how, if he was hated that much, he would delete the group.(A thinly veiled threat to abandon a group of people, many of whom were shut-ins and had no knowledge of other groups.) The person who had warned me forwarded the text to me, feeling that I had a right to know what was being said about me behind my back. When she left, I joined under a different name, using a different email it was worse than I thought. He was saying that I "had been removed" that he didn't know why, and oh! how he was stroked! Things were said about me that I would never imagine about anyone else, and he could do no wrong! The things people would say to keep the status quo. A very small minority posted things like "well, shouldn't we be discussing the group, and what we get out of it, rather than if someone is hated or not" but those came far and in-between...most seemed happy to tear apart anyone who criticized their fearless leader.

Well, that was my introduction to Yahoo Groups, that concerned Chronic Pain…which would lead to my being re-banned (and reinstated) into the same group,which I now hardly bother with, and being given the red carpet treatment into another one, only to be banned within hours of announcing the suicide of a member.

No, I'm not the shrinking, submissive type. On a Usenet group, where I sort of ended up(I went there to answer a post by a doctor, which had been copied by Mr. "Am I Hated"s successor. No, I'm not universally liked there, and even make an appearance on a hate list, I feel more comfortable there than most other places-mostly advocacy groups like the community forum page of the Drug Policy Alliance.

So...is it best to hide your real experience? For some, maybe. But, I find it hard to be dishonest about any group's stated purpose, with which I have experience, Plus, it may be of help to those who do have similar experiences-and, are fearful. Or, even if they're not ready to go public, they'll know that they are not the only ones.

I've considered starting a moderated group-but then, would I as Bob Dylan said in My Back Pages, "become my enemy, in the instant that I preach"? Banning those who spam a group, continually, I have no trouble with...but I have found, some people can be helpful one moment, annoying the next. and then, pain aggravates things. It can be a real ego blow to be banned from a group. Would I want to feel responsible for someone's depression? or even, suicide? Pain is a difficult thing to live with...rejection can all-too-often be the straw that breaks the camel's back.

But then, it's not easy to watch people get bullied, abused, and possibly separated from someone who can help them. So-at least for now-leadership is not for me.

I guess it's a good idea to educate pain patients-of all backgrounds, and who have used different ways, wise, foolish, and in-between, in attempts to relieve their pain. My jail time (and those of anyone else) is a definite lesson in how not be assured of getting pain relief...and, also a picture of true desperation, showing how hard it is to live with pain. Of course, that means not keeping silent

Like I have said, I am a radical. And, will bring up things that may make people question things they thought they knew about addiction, pain, and the not-so-thin line that separates them.

Paey Freed!

Sometimes the justice system works.
This time, a bit late, but...at a clemency hearing, probably the only one that Richard Paey would get in his lifetime, Governor Crist of Florida went a step or two further than asked-he gave Paey a full pardon. Yes, in the same state that would have let this man rot in prison for the rest of his life, someone saw that justice was done!

This is the best news for chronic pain patients in a long time-with doctors being arrested left and right, leaving the ones left afraid to handle their patient's pain, and stories of brave drug warriors taking precedence over those of people in pain, struggling to live a halfway normal life in the 'what's-in-it for MEdia', something like this pardon is something that makes it worth while to get up in the morning.

Yes, Florida has a governor who was able to ignore those who use the fear of drugs and addiction to further their own careers, get votes, and 'entertain' the public they are supposed to inform, and simply do the right thing. I applaud Governor Crist's integrity, and wish Mr. Paey and his family a long, free, and happy life together.

Richard Paey...A total Miscarrigae of Justice

This is an article I wrote a while back, for another site:

Richard Paey-Patient or Pusher?

Pain and its treatment was a recent subject on "60 Minutes". The main subject of this particular episode was d Richard Paey, who is serving 25 years in Florida for drug trafficking.

He had been living in New Jersey, and had Multiple sclerosis, plus, he had had a serious accident. He was coping, with medium-strength painkillers given to him by his doctor.

But legal problems began when he moved to Florida..some accounts say that it was, at least partly, for his health!!! He was unable to get the medications he needed. One doctor, knowing how closely the DEA watches pain specialists and their patients in Florida, told him, frankly "you're screwed".

What happened next isn't clear; he began presenting prescriptions from his doctor from New Jersey. He was put under surveillance; then arrested, for "drug trafficking-writing forged prescriptions, and distributing or selling them. His doctor, asked if he wrote the prescriptions, at first said "yes", which quickly became "no' when he found that he was being considered-as a co-defendant!

It's unlikely that Paey ever trafficked in drugs (he 's wheelchair-bound-and could only walk short distances, with leg braces, when he first moved to Florida), and it's even questionable if he participated in forgery! The scenario is bit murky, due to the flip-flop attitude of is doctor,which should make other doctors ashamed. Paey doesn't discuss it; most likely,he has been advised by his lawyer not to talk about it because, in case of an appeal, his defense may want to use it to the best possible advantage. Ironically, Paey was actually given stronger drugs, upon being imprisoned. Instead or the Percocet and Vicodin he had been taking, he now is using a morphine pump-courtesy of the Florida Department of Corrections! At least he's off the Tylenol combinations, that were no doubt, damaging his liver, and, is on the morphine he probably has been needing for a long time.But justice won't be served until he gets out of jail, and has the chance to become productive again-this time, with his pain managed properly.

When Jeb Bush, governor of Florida, found that his own daughter had phoned over an unauthorized Xanax prescription, he called it a "personal, family, problem". I don't know why he didn't commute Mr. Paey's conviction; he's been in jail for 5 or 6 years [note for current blog-Paey ws convicted in 2004, so, not quite so long], and he'd be better off paying his own bills (drugs included), and living a productive life.

This is one of the greatest miscarriages of justice I've seen, in recent years!!! Even if he committed all the crimes he was charged with, 25 years is much more than what most rapists serve, and even many murderers!

There have been several letter-writing campaigns, but so far, he remains in a Florida jail.

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I write this now, because Mr. Paey's case is being considered for clemency...for what may be the last time. Yes, his crime is similar to mine...if it was, in fact, a crime. He claimed, in an article published by the Pain Relief Network, that his New Jersey doctor, in fact, had given him some undated scripts, for use until he could find a new doctor. A decision is expected tomorrow, and new information should be available on the case, as it develops, on the site mentioned above, which is now added to the 'Helpful Links" part of this blog.

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Update!

Paey freed!

Details to follow-just found out from an impeccable source, who, unfortunately, did not poat a direct link!

The Making of A Junkie

Are Junkies born, or made?

Me, I suffer from Chronic Pain. I have since I had the first of three accidents-a fall down a flight of stairs-in 1979. But, as opiates were soon the only effective method of pain control, I soon had the 'addict' label lurking over my head. One doctor, an orthopedic specialist, admitting that I was not getting better, used the fact to stop giving me opiates and muscle relaxers. Well, that made sense. Since there was no getting better, there should be no feeling better.

Still, I kept trying. I went to different doctors; I never got anything stronger than Percocet and that, not for the chronic symptoms-only when I had an acute condition, did I get that rare chance at relief.

I hit my late 30's. I wasn't getting any younger. And I felt even older than I was.

Sometime after my 40th birthday, I saw a chance at relief; some doctors left their prescription pads unattended, I began to notice.

Do I have to describe the next step?

But this isn't 'the Making of a Criminal'. So, I skip to almost a year later. After I've been caught.

My court-appointed lawyer advises me to check into my local hospital's detox. I have to wait; he says to make sure that I don't go in 'clean'. I make it, all right.

By then, I've accepted the 'addict' label. Fortunate for me, since I'm going to be attending two to three Alcoholics Anonymous, or Narcotics Anonymous meetings a day. Of course, that's where you intrdouce yourself by your first name, and say I'm an alcoholic(addict). Plus, classes by the 'addiction specialist' doctor, ans similarly-trained nurses.

The first three days, I'm on methadone. Not for pain, but for detox purposes. I feel a sense of unreality; a kind of spaciness, I want to succeed; but, somehow, I know that I won't.

Throughout, I get the feeling that there's a difference between myself and the other patients- I'm not better, or more deserving, or even less of a drug fiend; still, I know that drugs will never be eliminated from my life. I get an inkling of what I mean, when I hear myself ask the doctor, using a thought process that I'm just beginning to reclaim, if I can go on methadone maintenance indefinitely; he refuses angrily. Later, he will say that he'll think abut it, but it's never brought up again.

For the most part,I get along with the others...we all ourselves 'the junkies'. One thing they can't understand, though-two are even angered by it; whenever we are told to 'talk of the pain' that is exactly what I talk about-the actual, physical, pain, that I have, every day, and probably always will. In turn, they speak about getting high...well, I've used alcohol, of course, and marijuana, for that purpose...and, yes, some of the opiates I've been taking have that effect, sometimes-but I don't have that overwhelming, impulsive need to get high....just as they don't have the overwhelming, impulsive need to take painkillers, when the have an ache or pain.

My name is Legend. I am a Chronic Pain Sufferer.

But, I get ahead of myself.

I ask the doctor to prescribe Tylenol for me, so that I can get rid of some of the pain; he agrees, but keeps putting it off. Soon, I also have a case of the flu, along with a hacking cough; It is so bad, that even my fellow inpatients, and the nurses, sympathize; yet, the doc is slow in writing the script.

But, during one of my requests, at the nurses' station(where all meds are handed out) I hear a term, now used quite often, for the very first time; drug-seeking behavior!

Some kinds of junkies have to be made; and I'm one of them.

Now, I know, and so does everyone else, that I'm not going to get any opiates, or remotely similar drugs, there; yet, it has been necessary to put me through the paces...already, I strongly suspected some of the doctors that I'd consulted, of knowing how bad my pain was, and letting me wear the mantle of an addict, instead...it was the 'kinder' approach-especially in the early 1980's, when I was still in my early 30's...Better for me to think that I was in danger of having some uncontrollable, impulsive, disease, than to know that relief is out there, but no doctor is going to give it to me, as I needed it. Doctors just weren't that stupid, they couldn't be. Well, I guess it's not for me to know.

So, 'drug-seeking behavior' safely pointed out, I was given my(non-narcotic, of course) cough medicine, and regular Tylenol; by this time, my stay is nearly over. I'm even accepting things more, and tell one of the NA group leaders that "I'm just starting to think I'll make it."

Well, I don't, but that's another story. We skip ahead to a time after I've done my prison time, but before I'm free to live as I choose; I have a new Parole Officer, and, even though I'm required to attend a 'drug-free' rehab, outpatient, she notices that I'm in pain-and insists that I see a pain specialist!

Well, hat's when the Hallelujah Chorus comes in-but I've had to go through all of this-just to be told what I already knew-I'm In Chronic Pain.


For those who have never been to jail or prison, or under the threat-there are few people, outside of libertarians and other ex-cons, who will accept you, especially as a group; as I mentioned in my previous post, no, not even Chronic Pain Sufferers, as a group, will give universal acceptance. I'm usually regarded as someone who 'acted outside the box', endangering other Chronic Painer's status with the law, and the medical community. I don't see my crime as something I needed to do, or couldn't have done without-but it did put me in a place where I had no right to judge addicts for using drugs. Something I think we should all think about, when we're living through hard times, with insufficient medicine and other relief.

Introduction

CP, The Law, the Internet, and me

Well, let's see-maybe you had an accident, and, when conventional treatments didn't work, or left you even worse, you ended up being in pain much longer than you expected. Maybe you had a condition-MS, fibro, neuropathy, even diabetes (which comes with it's own brand of neuropathy).which just kept making you hurt-and the painful times got worse, and more frequent, as you went along, taking your doctor's advice. He may have sent you to a new kin of doctor-or, maye he quit treating you, with the reason that "There's nothing more I can do". But you knew something had to be done so you found your way to opiate relief!

The more fortunate of you found compassionate doctors, who assured you that you were NOT addicted...this was just a medicine you needed, like a diabetic needs insulin (I was once called a 'retard' for using that analogy-but then, I'm no doctor-more on that story later). Some of you began accepting pain scripts from multiple doctors-sometimes, even with the doctors knowing about it. and some may have started to casually 'borrow' pills prescribed to other people, maybe trading some meds you no longer needed.

but, all through this, with a few exceptions (mainly with those who never had trouble with doctors,who never had trouble -a rare combination, to say the least) the threat was never far away-what would we do when our supply ran out? Does it mean that I'm one of those...addicts??? So, you try and stop. And many do, successfully. but, in the back of your mind there will always be the knowledge that you can be so much more comfortable, active, productive, and free!

What to do?

Many can say they suffered in quiet dignity; I'm certainly not saying that my case is universal, necessary, and, definitely not the best action...when push came to shove, I crossed the line-to an actual, prosecutable crime. Prescription forgery.

Well, I'm not writing this to comment on the prison system. I ended up staying for 11 months-longer than I expected (because of a deal that my lawyer had cut) but much less than it could have been. The specific crimes I plead guilty to held a maximum of 4 years.

All that time, I believed myself to be an addict. I really had not much of an idea of what chronic pain treatment was. And, I had seldom taken drugs stronger than codeine-even when the choice had been literally, in my hand, I seldom chose Vicodin, and never attempted to forge a triplicate. I was given Percocet for acute conditions on occasion-that's the strongest I ever had.

Well,I still was free-but still required to go to an outpatient rehab. It was more inflexible about pain relief than even the prison had been-I had to stop taking the Klonipin I was prescribed there. I fulfilled the requirements for over a year, until a scare with heart palpitations allowed my regular doctor to put e back on Klonipin. but, as o the pain, it was my parole officer who saw that I was having some trouble with my back and feet, and insisted that I get help-for my PAIN.

I also began to think...maybe if I had had pain treatment, proper pain treatment, I may not have had to go through this. Also, I kind of wondered...what did incarcerating a 43-year-old woman have to do with the stories you hear about the trouble caused by addiction. Except for the things I did to ake care of my pain, I wasn't a thief, never thought of being a prostitute, and didn't really take much interest in illegal drugs. Except for marijuana, which was just an occasional party drug, that I could take or leave, and cocaine, which I tried 3 times, and which had no effect on me, I really wasn't experienced at all!

So, where did that leave me?

I took an interest in, and joined, the Libertarian Party-for this reason, as well as many others. Their position was pretty much my own-on this matter. Although force and fraud (of which forgery is a part) is universally condemned, most libertarians think that the law was wrong to begin with. I was pretty quiet about having a criminal record-until the Rush Limbaugh case. Then, I wrote a post to the new York Libertarian Party's Yahoo group-followed by several to advocacy groups-notably, the Drug Policy Alliance. I pretty much got a good reception.

With the exception of Chronic Pain forums.

I'm not someone that easily fades into the background-I'm either out front, or on the sidelines-an almost silent 'lurker'. When I began to post in CP forums, I saw no reason not to be 'out front'.

But, there was a reason. They did NOT want to be associated with anything remotely tainted with the idea of 'addiction'. No. Those were for the 12-step groups (which had never helped me, for obvious reasons.) People with chronic Pain go to doctors. Addicts go to jail. Obviously, never the twain shall meet.

Should it?

Well, striping it of legal, moral, and most other considerations-who wants reasonable access to drugs-mainly opiates, although medical marijuana is gaining ground?

Quite simply, the people who use drugs.

Who are they? Oh, this question and answer format is getting tiring. It's the people who have a need for drugs. Quite simply, addicts and ourselves.

Butbbut give drugs to addicts? Won't that make them-oh that's right-they're already addicted.

I was thinking more along the lines of letting drugs be sold, allowing the open market to set the prices. And, with law-abiding people among them, the prices are likely to go down, the quality be required to be controlled, so, the world of theft, prostitution, and other degrading acts done to pay for the drugs will lessen-that's for sure.

Doctors-since patients will be able to get their drugs with or without their say-so will be free to research and treat diseases that are treatable, even curable...instead of spending half their time playing pin the tail on the junkie-and often being wrong, with tragic results.

Police will be free to pursue violent criminals. Most likely, the DEA will cease to be. No, it won't be a perfect world-but doesn't it deserve a chance at being a better one than the one we have?