The War On Drugs has become a war on doctors and patients, especially patients. It is an easy group to attack because they cannot defend themselves. For the past decade though, doctors cannot defend themselves either, not against a government that can attack forever, define terms as they wish (an "addict" is somene who takes X number of this type of pills, and nevermind what all research and correct treatment procedure says.) As many as 19,000 people at LEAST die by their own hands every year for lack of treatment - and due to unremitting abuse as well as pain. It is likely MANY more than that, but a great many are simply classed as addicts. Much of it is caused by insurance companies saving money, or by politicians who need to look "tough on crime" or "anti-drug" and so on.
It turns injured, formerly productive citizens into criminals, street people, "ER abusers", "druggies" and other classifications considered less-than-human, when correct diagnosis and treatment from the beginning (which includes proper work safety laws) could have kept the vast majority productive and healthy, and could still return many to that status.
From "The American Inquisition"
by Ian MacLeod
Tue Jun 05, 2007 at 08:35:38 AM PDT
You wake up one morning and your left leg hurts terribly. Maybe you did
a little too much on that first day of Spring lawn work, but it hurts so
badly you can put almost no weight on it at all. You take some aspirin
and wait a few hours hoping it will get better, but it doesn't.
Finally, you break down and, because it's a weekend and your doctor’s
office is closed, you go in to the emergency room.
The doctor there sends you to x-ray. When he finally comes back in to
the little ER cubicle, he tells you that your x-rays are fine. He
suggests you take some Motrin and says to take it easy for the weekend.
You tell him it's all you can do not to scream - there must be something
very wrong; there must be other tests that can be run.
"I've run all the routine tests; there's nothing wrong. You probably
just pulled something. I'm not about to give you narcotics for a pulled
muscle". He says.
"Doctor, you're not hearing me. This pain is terrible! It can't be just
a pulled muscle! I've had pulled muscles before."
Your ER doc has lost interest, and he isn't going to argue. He won't
give you anything stronger than what you've already been taking, even
though you tell it hasn't helped at all. He gives you a prescription
for something you can get over the counter, and because you tell him you
hurt too much to drive, he calls a cab for you. It takes you almost half
an hour to get from the ER gurney to the cab. You go because you have
no choice. You hope your regular doc will do something about this.
Meanwhile, you owe $478.00 for no help at all. Meanwhile, you have a
vague feeling that you've done something wrong.
Unknown to you, the ER doctor has added a note to your chart: "DRUG
SEEKING BEHAVIOR".
You don't sleep for more than fifteen minutes at a time the whole
weekend. You call your doctors office first thing Monday morning, but
he can't get you in before Wednesday afternoon, even though you tell him
you can't even get in to work. Three days pass like three weeks.
You hobble into your doctors office bent over like Quasimodo. Your
doctor has the ER report.
"The emergency doctor says you were trying to get narcotics. What's up?"
Mystified, you tell him you've never had pain like this before. You tell
him the other doctor just poked around and took x-rays. You tell him you
haven't slept more than a few hours in five days. You pour out your
fears and your concerns: how will you work? How will take care of
everything in your life that needs your attention, like your children,
your wife?
"Well, look - I can't just hand you a bunch of narcotics for an injury
that I have no proof of. Let me make a call." He goes away for a
while. When he comes back, he says, "I've got you scheduled for a EMG
and an MRI in three weeks. Let's see what those show." He gives you a
prescription for thirty Tylenol 3 tablets. It turns out that three or
four of them actually help; not much, but at least you get a little
relief. You take them only when you're ready to scream from the pain
and cry from the lack of rest. When you call in to ask for a few more,
your doctor is alarmed and refuses. You have eight days to go before
the test, and of course the people doing the test can't do anything to
relieve your pain, so that means you have to wait until the radiologist
and neurologist read the tests, plus however long it takes to get back
in to see your own doctor.
"What do I do between now and then??", you ask. "I can't go to work, I
can't sleep, I can barely get to the bathroom. I can't live like this!"
"Well", he says, "There's nothing I can do about that. You'll just have
to grit your teeth and cope as well as you can. I don't like this;
you're acting like an addict." He says.
"I'm acting like a man in desperate pain!", you tell him, but he has
other patients to see.
This is the first betrayal; the long, long nightmare has begun.
Three weeks is too long. Finally, in desperation, you go in to three
other emergency rooms, and one doctor gives you another handful of weak
Tylenol with codeine. You get a couple hours of blessed rest from
them, then they're gone and you’re $1,200 more in debt. Your boss wants to know what's happening, and there's really nothing you can tell him. He lets you take annual leave, but says he wants a letter from your doctor when you get back.
The EMG test shows some "mild" neuropathy - meaning something wrong, but not much - and the MRI shows multiple disk bulges - not herniations.
You almost cry in relief until your doctor tells you that 30 percent of
men your age have these and have no symptoms at all. There's certainly
no evidence there to show that you're in as much pain as you claim. He
won't do anything for the pain, and feels that the tests don't justify
his writing an 'excuse" for you full three weeks of absence from work.
You realize that your doctor has called you a liar. He doesn't believe
that you hurt as much as you say you do, and he's obviously sure that,
despite no previous record of drug abuse, you're angling for powerful
narcotics. You feel humiliated. This is the second betrayal.
Your boss is NOT sympathetic, and you still can't work. You ask to see
another doctor, but your insurance won't cover it. Eventually, you lose
the job.
Your wife, meanwhile, can't believe that you're allowing a little back
trouble and leg pain to ruin everything you've both worked so hard for.
She says, "Look - I've had back pain and hemorrhoids every since I
delivered YOUR children, and I still go to work!" No one seems to understand that the pain is so great it's all you can do to keep from killing
yourself - or someone else. She especially can't seem to stand seeing you
on the couch doing nothing. "Take out the trash at least!", she'll say.
When you tell her you can't lift the garbage can, she says, "My God, what
a baby! I can't believe this!"
Eventually, she leaves, taking your children with her. She's not about to
support a malingering husband. It's YOUR job to support her, if
anything. Worse, you feel this way yourself, but you just can't do
anything about it. The third betrayal.
You apply for Social Security Disability. Everything to do with it
takes months, and when you try to find a lawyer to expedite things, you
find that none will take the case until after you've been turned down at
least once.
As time passes, everything you loved to do is taken from you by the
pain. Everything you defined yourself by is as far beyond you as the
moon. You're beginning to wonder who you are; you don't really know
anymore.
While you're waiting on Social Security, you try a VA hospital; they see
you, but it takes nine hours, you get thirty seconds with the doctor,
and another Motrin prescription. The eligibility department says that's
all you're eligible for. You try the county hospital, but they won't
prescribe for addicts, which your record now states you are. Besides,
there's a fellow with a sliced artery in at the same time as you, and all five
doctors are in watching him and his treatment. The one doctor who finally
spends five minutes with you says it's a back strain, and to go home, rest
and take some Motrin. She's not interested in how long you've been like
this, or that Motrin does nothing. She walks out while you're still talking.
Social Security turns you down on the grounds that you're "cured". How
they decided that you have no idea, but it's done. You appeal, and this
time you find a lawyer who will take the case on contingency. Another betrayal: you ralize that the "help" you though you could rely on in a true emergency is designed to try to kill you so that even your government doesn't have to pay you the benefits you've paid for all your working life.
While you're waiting, you find a VA hospital that will do much more than
the last. It takes almost a year, but they do a CT scan. It shows
little, but it shows enough that they decide to do an MRI. Each time
you go there you have new doctor. Some give you a handful of pills,
some give you nothing. One writes about your, "narcotics addiction".
You fight this with administration, and they change it; the doctor
involved seems hurt.
You are, meanwhile, sent to orthopedics (they find nothing wrong), drug
rehab (they say you have a pain problem, not a drug problem, but no one
listens), psychiatry, who decides you're depressed, and gives you a
medicine you can't stand - it makes you feel intolerably "weird", and makes the pain harder to handle.
The MRI shows multiple bulges that are pressing on nerves, and pieces of
desiccated disk material wedged into nerve roots. The surgeons consultation
comes to the conclusion that there is no operation that would help; you'll
just have to "live with it". You assault one self-righteous doctor who tells
you that narcotics are a tool of the Devil, and you're a wimp who'll just have
to learn to live with it. Perhaps you'll learn years later - after the pain
transmitting nerves have proliferated and your nervous system has rewired
itself to make the pain permanent - that they could have operated to remove
the pieces of disk and do other things that would remove the pressure from
the nerves. You wish the doctor you assaulted had been right - you'd happily
make a deal with the devil to get out of pain.
All in all, you get maybe two weeks worth of pain pills a month, and
have to make them last three months. The next doctor is just as likely to call you an addict and force you into drug rehab, most of which will throw you out in a few days and tell the referring doctor that you have a pain problem, not a drug problem; he will ignore it.
As always, you quit eating the last week or ten days of each month so you can pay for rent and utilities, because all you have is the Social Security Disability it took you years and an unbelievable amount of bureaucracy to get. There were "waiting periods" involved that are clearly designed to kill off as many patients as possible before they have to start the payments, or to make people give up; it works much of the time, too. It saves money. Some doctors tell you you’re doing this for the sympathy (that you’ve never seen and don’t want anyway), the money (that is totally inadequate) and other "secondary rewards". Usually you can avoid spitting on their floors, shoes, or other displays of anger. Usually.
After awhile though, you're not entirely sane, between torture that has no wuestions you can answer to make the pain stop, sleep deprivation, identity crisis, lonliness, starvation, loss of everything you once defined yourself by, and dwindling options.You've lost your home, your family, your job, your car, your dignity, your self image, and even contact with your children. Their mother doesn't want them seeing you "like this", meaning living almost like a street person, always "lounging around and moaning." Even before she left, you had been unable to lift the kids because of the pain. She thought it was very selfish of you.
Of course, it's all attrbuted to drug abuse.
Old friends have stopped coming around, as has the rest of your family.
They get tired of hearing that you hurt, of seeing that you have a hard
time moving around. You learn to keep the pain out of your voice, your
face, your movements. Often, this is a disadvantage, as doctors you see
tell you that you, "...don't look or act like you're in pain...". The little pride you have left, though, won't allow you to scream and moan. Besides, who can scream, moan and writhe for decades? And a decade is what passes.
Your personal pride is gone; you can't keep house for yourself.
You have to quit eating for the last five to eight days before the SSDI
check comes in - you can't afford it. Your personal appearance is poor -
it hurts too much to groom regularly, and besides, all of your decent
clothes are falling apart and you can't afford new ones. Suicide looks
more and more attractive. Doctors still call you an addict, which makes
no sense to you. You don’t get "high" from the meds – when you get a few – just some relief, and people permanently on insulin, statins and other meds aren’t called addicts. Just you, it seems.
You turn down narcotics that don't work for you. You've tried
trigger point injections, steroids - everything that a new doctor wanted
to try. Nothing works well, or for very long. No doctor will give you
more than a weeks worth of relief at a time, so you often see several;
sometimes you get caught and have to start from scratch. Some clinics
and doctors have blacklisted you. Half the time when you see a new
doctor, an old one writes or calls him to tell him you're an addict.
They still charge you, but they don't do anything.
One day you find you can't stand at all; you can barely crawl, and that
causes you to scream. You get the ER by taxi, as you can't pay for an
ambulance. Two disks have herniated, and they decide to operate
tomorrow morning. Tonight is the night your girlfriend decides to break
up. She just can't take your self-involvement any more. After the
operation you still hurt, but it's better than it ever was - for about a
month. Then you're back in the same old condition. They operate again,
with the doctor literally shouting at you and telling everyone who will
listen that you're an addict and a liar. Another doctor finds more disk
material in your spine, though, so they operate again - after only two
months.
The operation helps a bit more, and you use the slight added mobility to
go to some other town, where the same cycle starts over again as the pain again worsens. You live on the floor of a cheap apartment you were lucky to get into. You eat when you can stand to move, or at least to crawl into the kitchen, and the "food" is whatever you can just pick up and eat, and whatever you were able to afford, before you have to lie back down. Sometimes, in your infrequent, restless sleep, you dream of breaking or even killing one of these so-called "healers" who could, you know, give you back a least a PART of your life, or a little real rest. If you're a veteran or someone else with the training to actually do it, or even to kill someone in an instant, the temptation can be horrible. They don't realize though, that once in a great while, when you scream in sheer frustration and pain, and perhaps strike a wall you know you can't hurt, it's to avoid tearing the throat out of another self-righteous fool with an M.D. who condemns you, mockingly, to suffering .
Some doctors tell you your biggest problem is that you don’t take care of yourself.
You've gathered information over the years about current research that
shows that chronic pain patients don't get "high", which you've known.
You have documentation that shows you SHOULD be in pain, and that
narcotics are the only possible treatment. Still, despite all of the information and documentation you have, to most doctors you are an addict, and no amount of proof will change their minds. Even though every independent study done says that constant pain requires constant treatment, even though when you HAVE the narcotics your life and functionality improve (an addict does just the opposite), even though all of the tests done say you’re not an "addictive personality" and you have no prior history of drug abuse – just hard work and an athletic life, despite new medical guidelines for the treatment of chronic pain, despite everything that is technically in your favor, there is little or no change in how you are - and are NOT - treated. You've been labeled useless, an addict (the PC term is now "drug seeker", but it means the same thing), and it's almost impossible to have such labels changed. Worse, it's hard not to believe it yourself. This and your pain are your life forever now.
This is the last betrayal: you betray yourself by finally believing that you really are worthless.
__________________________
There is a woman in New
There is a woman in New York that is trying to raise money for a lawsuit she has written against the DEA for practicing medicine without a license. Her name is Siobhan Reynolds and she is with Action On Pain. What is sickest about all of this is it is a war against those least able to fight back; chronic pain patients who don't have the pain free hours to fight. Try doing ANYTHING with agony comparable to say , skin sliced open and coals inserted. Don't feel bad, my partner punched a med worker with a bad attitude also.
You'll find she's doing a
You'll find she's doing a LOT more than that. She and Dr. Alex Deluca do a lot of things together, and one thing they've done is put together an excellent resource page:
htto://www.doctordeluca.com/
Check it out!
Ian
Brilliant!
You just described my life for the past decade or so.Except I'm a woman(hysterical in the eyes of some doctors),and not a vet.I chose to stay home with my kids when they were little,and had fibromyalgia by the time they were all in school.So, I don't have the work history needed to get social security disability.I recently won SSI, but will probably only get backpay, because my husband works(even though it's a crappy job, and he has uncontrolled diabetes)and makes too much money for me to get an ongoing check, or medicaid.We're just hoping the backpay check is enoughfor us to start some kind of home business or something that might allow us a little bit of ongoing income.I've had no pain relief in almost a year,and very little before that, because I had the nerve to develop an invisible disability that many doctors still feel is a "wastebasket diagnosis"(meaning it doesn't exist).But, the feelings you describe, and the way chronic pain patients are treated, is accurate to the letter.
Sherry
Sherry, I'm so sorry to hear
Sherry,
I'm so sorry to hear about your problems. Knowing you're not alone can be a help sometimes, but it still doesn't stop the pain. One place you might check out is http://www.doctordeluca.com/ There's a tremendous amount of information available there, as well as blogs and forums for others in the same positions. There are FAR more of us than the MSM will ever let out.
Medicine likes to think it has changed and grown now, in the "age of science", but they still do the same things they did back when Elizabeth Kenny found a way to treat polio before the Salk vaccine came out; they even mocked her for using words and phrases like "muscle spasms", and simply completely ignored her results. If they can't see it, measure it or cure it, it doesn't exist for them, especially if the information is herbal, non-Western medicine, or from someone else "not one of their own", and as usual, women get the worst of it. I'm surprised they don't still diagnose women with the "vapors". Arthritis was such a disease once, as fibromyalgia and chronic fatigue syndrome are now.
As for my accuracy, after more than two decades in pain, with a decade of that being ignored, treated like an addict or criminal for daring to have a medical problem that doctors couldn't measure - meaning to them that it therefore doesn't exist - which has caused the nerve pain to become permanent, I have a really good handle on it. All it took in the beginning was for my insurance company to send me to a doctor who was willing to call me liar and say I was just looking for drugs, and they dropped me like a hot rock; shortly thereafter, so did the job. After that I couldn't work, and the nightmare really began. Try sleeping under a bush in a park in L.A. sometime, washing in gas stations bathrooms or breaking the ice out of someone's birdbath, and not eating more than once or twice a week. It's amazing how many "help" organizations label people, especially healthy-looking young males, chronic abusers because of a too-frequent need for help.
I am older than I should be, with the stress from untreated and undertreated pain causing type II diabetes (I was a professional level athlete), hypothyroidism and other problems. And now, when I'm more helpless than ever and desperately dependent on the proper medication regime, I get a doctor I have no choice about seeing who believes that lowering medication levels that work is just the thing for treating chronic pain. On top of that, I have a wife in end-stage COPD who is all but helpless, a house to take care of, etc. I really don't know what will happen from here. I'm hoping we don't lose the house before my wife is gone, and we end up homeless, with her needing oxygen 24-7, 40 lbs underweight at five feet tall, and just able to get from the bedroom to the living room and back - with help. I've lived homeless before, but how we could, I just don't know, and EVERYthing is being defunded, it seems like. We "make too much money on SSDI" for more than $10 a month in food stamps, and can only use the food bank once a month. We can't even commit Chapter 7 bankruptcy - we're too poor for that; it's only for millionaires nowadays.
Ian
Ian: Sometimes I wander,why
Ian:
Sometimes I wander,why does BigPharma make painkillers anyway? If not to treat chronic pain. I'm baffled. I went undiagnosed with Ms from 73-96, until I was sent to a top-notched neurologist. Finally my GP got on the ball and sent me to him because I was semi-paralyzed from the waist on down. The GP paid no attention to my rock hard stiff neck, or my chronic fatigue either.
I also had severe panic attacks where I would wind up in the ER. The stooges took my blood and knew I wasn't on speed. But they would ask me over and over again,"Are you sure you haven't taken diet pills." How degrading it was. I weighed 120lbs. Why would I need to lose more weight?
So my neur. was kind enough to give me Elavil(anti-depressant),that also works for pain, because it directly works with the spinal cord nerves. But the panic attacks continued. Of course my GP would only give me 15 a mon.of Ativan,which does not work well for PA.
To make a long story short, my new doctor in NC makes sure I have the meds I need to function. He understands a person does not want to be contorted in pain and rendered useless everyday. That is what pain does to you. Most Drs. really believe you can withstand the pain, or either they don't believe the patient.
I am beginning to believe there is little compassion in the medical field anymore. It is all about collecting the fee.
God Bless You........
__________________________barbinNC
I'm sorry to hear about your
I'm sorry to hear about your long trial, and I'm so glad for you that you've found a good doctor! You're lucky - it looks like I just lost mine to VA paranoia.
Doctors are like any other people: they're subject to propaganda and conditioning, and that's what the War on Drugs is all about. When someone presents with pain and/or other symptoms that could be attributed to drugs, that's usually their first thought. You see, aside from the fact that being a doctor doesn't make someone a healer - some are little more than technicians, like the GP who failed to recognize your symptoms, they are also expected to do the impossible: to know when they are being lied to by people who want drugs to get high on or to sell. Of course, there's no way for ANYONE to catch all such people, and many they think are just that are people who are really in pain. The pharmaceutical companies make LOTS of money off of narcotics. Believe me. The trouble is, so do the cops in the DEA and other agencies: about $20 billion, and that isn't counting the private prison industry (which trades on the NADAQ) profits from the 2.3 million prisoners in the United States. We have more people, and a larger percentage of our population, most of them poor, and most on simple possession charges, in prison than any other country on earth!
If they decide to go after a doctor who is treating chronic pain correctly, even if that doctor is following medical standards and DEA standards to the letter, they will likely end up in jail, so most doctors are terribly afraid, and with good reason. The government can attack forever, they can freeze assets and take records, destroying the doctor's practice and their ability to defend themselves, they can lie, bribe witnesses, misinform juries, and in fact, they can do just about anything to get a conviction, no matter how right the doctor was. It makes it look like they're doing something for all that government funding they get.
There are several types of people we have to deal with. One type is the fanatics who actually believe that these drugs are, in and of themselves, EVIL. They're sure that anyone who takes them regularly WILL become an addict, and everyone knows addicts are evil. Like most fanatics, they are willing to hurt any number of innocent people as long as they can GET THE BAD GUYS!
Another type is the hungry, up-and-coming prosecutor. With mandatory minimums, they have helped steer American "justice" into the punitive, guilty until proven otherwise (and they won't allow you to prove otherwise if they can possibly help it), destructive thing it has become instead of innocent until proved guilty, and then paying one's debt to society and getting another chance as it was originally intended. Looking "tough on crime" is good for people with political ambitions, too, and drugs are the perfect platform. Anyone who tries to be fair about them immediately gets tarred with the brush, "pro-drug", or is accused of "coming out for drugs!" and so on. They're easy targets, and it's a hard thing to defend against, especially since the law has become so twisted that essentially anyone can be targeted and jailed forever, guilty or not, or politically swiftboated.
In other words, again, a lot of doctors are afraid, and with good reason. All they have to do is come to the attention of the wrong cop or agency, and that's the end of their careers and sometimes of their lives as free people.
Then there are civil forfeitures. If, say, a less than honest cop hires a parolee who could easily be sent back to jail to buy or sell a joint or some other drug at midnight on your front lawn while you're asleep, your home - the property itself! - becomes "guilty" and can be taken, along with your vehicle and everything in your house. The money goes to the police agency that made the "bust", and sometimes some goes to the parolee. A lot of agencies include forfeitures in their budgets. Proving the property wasn't guilty is almost impossible, and anything you get back, if you ever do, which is unlikely, will have been sold and probably trashed.
Until mandatory minimums are done away with and judges have their proper powers again - and prosecutors have their proper places again - and until this idiot government quits concerning itself with "victimless crimes", which should be an oxymoron (right now, agencies can make up all the statistics you could ever want to show you how many "victims" there are, but the truth is that the War on Drugs does FAR more damage than the drugs ever did or ever could), these drugs, the fanatics and greedy, power-hungry militarized police agencies that demonize the drugs and anyone who has anything to do with them, and who drive yet another war we're being lied into, there will continue to be victims of the War on Drugs, far too many of them doctors and patients. For now, they ARE the law, and they can make up or ignore all the studies they want - and they do. Every independent study ever done has shown the beneficial medical effects of marijuana, for instance, but it's still classed - by a police agency, not a medical one - as having no medical use. Even hemp, a relative of marijuana that has so little THC in it you'd die of smoke inhalation long before you ever caught anything like a buzz, is illegal, when it can be used to save HUGE numbers of desperately needed trees, which sequester carbon and could help slow global warming significantly. The seeds are good for oil and foods, the fiber for paper, clothing and all sorts of other things, it grows very quickly and almost anywhere on almost nothing. So of course the corporations that make money from chopping down forests - and corporations are what this administration is all about, no matter what damage they do to the rest of the country or the people - continue to lobby to keep hemp illegal, too.
There's SO much tied into it I couldn't even begin to explain it all here, but that's some of it.
At any rate, I'm glad you're being helped! I wish more of us were.
Ian
Thank you for this post,
Thank you for this post, Ian. I have walked many miles in your moccassins. So many of us are driven underground and mute by the confusion about someones morals being confused with their need for adequate pain managent. Good luck with the VA. I had problems with the free clinic but did find help with the Osteopathic docs. Now of course I cannot afford them so went back to the free clinic. Thankfully a sceptical but kind doc there put me in a MRI and got some very scary results. My future isn't bright. They were not accepting the fibromyalgia either at all until then. Thankfully I'm getting some much needed respite now but boy is it tightly controlled. Perhaps it needs to be as there are substance abusers out there ruining it for us valid patients. I wish you well with all that you are going through. I'd also like the names of your support links when you have the time. Endure, friend, and may the Powers That Be assist you.
catzoned, Hi! My wife
catzoned,
Hi!
My wife Koloneh and I are shared by eight cats (there's an ongoing ownership dispute, of course).
"I believe that pregnancy is a medical condition. "
Of course it is, and I couldn't HELP but care! The problem is that most male doctors treat pregnancy as a pathology, whereas most female docs know damned well it's a natural process and part of the design that occasionally INVOLVES a pathology, like any other physiological process. Still, I'm sure you could find a lawyer to argue either way. I think the safest course is to strengthen Roe v. Wade, then write CLEAR laws specifically naming abortion as a medical care RIGHT, and therefore a private matter between a woman and her physician.
Here's one excellent support link that will take you days to really check out:
http://www.doctordeluca.com/
Ian
Hey, Ian So many have
Hey, Ian
So many have chronic pain and it's just not fair! So many have sought medical help to no avail - again, not fair!
My Dad passed away Nov 07 with chronic Shingles,Diabetes, & Lukemia. My husband also passed away March 07 with chronic liver disease & Hep C.
In both cases, no cure! In both cases the longevity of the disease(s) itself makes you wonder, Just what these doctors and medical schools have been doing all these years. It has been said, "the right billionaire/political figure hasn't gotten the disease".
My Dad was a follower of the proscribed treatments - doing exactly as told. It got him shingles. (One of the meds for post chemo. caused the onset) The final specialist did not treat a known blockage of the colon, but continued standard protocol to the end. He under went quadupal bypass in June and had no real complaint. The blocked colon eventually caused toxins to buildup, counts to escalate uncontrollably.
At least his death was pieceful and a comfort to his daily existance.
My spouse of 28+ years had no idea he was sick until he went for pre-op for hernia surgery in 2003. It was later discovered he was 4+ cirrhosis of the liver. Out riding a mountain bike one day, and verily able to walk the next. We sought every available means to find professional help in a large metropolitan city. Only one Hepatologists in the whole region. He was denied treatment a number of times. Once on a transplant list, the other professionals do not want the risk. They love to do the scopes, but they do not want to treat! The most inhuman treatment of a patient. His death was his relief of daily, chronic, #10 on the scale of PAIN.
I did the research, listened to each specialist, and argued for his treatment. We were "labeled" and cast aside. He spent a week in the hospital that could do the transplant. One side said "you can't walk due to critical nature"; other side says, "you must walk or no transplant". Mean while excruciating pain and no bowl movements. No treatment, no meds. "You must deal with the pain and you must eat". He couldn't keep anything down, due to the blockage of the portal vein and the toxins. He was already dying.
One member of the transplant board debated with him while he laid in the bed, nausiated, in pain and with out meds. Not even an IV for nourishment. "If I were on the transplant list, I would eat, I would walk, I would deal with the pain". She should be removed from the board and stripped from the medical community.
I have had to fight post-death for coverage of medical bills and expenses. Seems once they die everyone is clueless. He had this ongoing disease for nearly 4 years and somehow, now they need more information.
His local specialist would not follow the recommendations from the transplant center. After nine months, I finally got him to agree to administer the Albumin support as recommended during fluid drains of the abdomen (parasentisis). "Just have that doc call me on my cell"... yeah, right!
It's third world medicine out there. Legislation and the Insurance industry have strangled modern medicine and our future.
Their battles are over (my Dad & Husband), but mine has just begun. A smart lady once told me "to make changes, you have to be part of the group/ in the loop" You can't change things from the outside (radical); but you can begin to mold the opinions and actions from within. Unfortunately, I am still on the outside. But am looking for some who are on the inside to help this battle of inhumane medical bureaucratic bull to cease. If you know of any person(s) in the "Loop" who are fedup as I - let me know. I have administered group insurance plans, investigated the legislation in regards to insurance and have researched several diseases like shingles and hep c that have no cures. UNOS has the writ and the transplant center NURSE's have the roll of GOD to who will be accepted and who will DIE. Much needs to be done other than an eight year spending for available livers.
In seeing the outreach of citizens toward victims of Katrina, I know there is a heart-beat in this country and all over the world that won't stand for this ill treatment and passive theology toward sick people in need of relief. What we need is clear direction, clear choice and practices that achieve results. Answers, not more griping. Answers & research!
By the way there are several internet sights for people with hep c or chronic pain to share information and discover possible treatments.
Does that damn 1 to 10 scale
Does that damn 1 to 10 scale makes sense to anybody? It confuses the heck out me! I use words like discomfort, pain (meaning it needs narcotic relief), or distress- which is holy cow, something is real wrong! I think we should use words that have some meaning.
I asked 3 nurses at the clinic which number they thought that needing to assume the fetal position in bed was, and was given 3 different answers.
My sympathies to the previous poster. I lost my brother because there was no liver available for him.
Endure, my friends.
This thing posted my reply
This thing posted my reply to the one under the one I was aiming for, but the info in it is something you might find useful also. My wife has been in bed for over 24 hours now and I HAVE to get her up, so I have to go. I really wish I had more to offer people.
That 10 point scale IS almost useless, because doctors will interpret it to mean whatever they want it to mean. To this new jerk I have to see, my being in pain because he forces me to drive for an hour and come in when we could do what we do over the phone interprets it to mean that my regimen isn't working, so "we" need to change ALL my meds, preferably all at once!
God bless us every one, and damn the bastards anyway! Hang in there and FIGHT, people!
Nvwhtohiyada!
Ian
Well, you're right: that
Well, you're right: that kind of thing is utterly insane! It looks to me like you have a ton of viable lawsuits, but if the law is the same as I tripped over, the statute of limitations for lawsuits to be filed is only two years, so do what you can to get those started, at least! There are firms all over the place that specialize in medical malpractice suits. If you have to, start with one that advertises on TV; once it's filed and in train, you can find other lawyers if necessary. That's medical malpractice, wrongful death, inhumane treatment and probably a lot of other things.
There are at least a couple of places where you can talk with other chronic pain patients, as well as with people who have lost loved ones to chronic pain and medical cowardice and ignorance. Try: http://www.painreliefnetwork.org/ for one, and http://www.doctordeluc.com/ for another. There are all sorts of resources, articles, forums and so on.
I'm so very sorry for their suffering and your loss. I wish I had more to offer, but I am, myself, in the middle of a fight for treatment. I was being treated decently at the VA, but they suddenly forced me away from my regular doctor and forced me to see another guy who has been cutting my meds and demanding I "try" things I know don't work, or that make me ill, or that are so scary from the studies and stories I've read about them that I refuse to have anything to do with them. I am the sole caretaker of a wife who is almost bed-ridden, and if I get incapacitated by either a new drug, or by lack of the ones that work, she's left all alone in a house where she can't get to anything, can't shop, cook, reach the bathroom, or even get herself a drink of water. She's lost weight and is down to 85 pounds at five feet tall, and I'm down 60 pounds (I'm 6'2" tall) at 160 pounds. My own pain, left untreated for over a decade, has also left me with hypothyroidism and type II diabetes, plus some other problems, including the constipation caused by narcotics, which are now not prescribed in doses that help me do what I have to do to keep my wife alive. Try those links, and I wish I had more to offer. If I find anything at all, I'll get in touch!
Ian
Thank you for your
Thank you for your support. I am not wanting to hinder the very needed liver transplant(and others); but would love to make changes to the "system". The inhumane practices for the sake of insurability or standard protocol set by "?". INSURANCE largely made up of nurse practicioners and capitalistic corporate type.
By filing a suit, I first have to prove prima facia case against the "status quo" of medical treatment and governing bodies. This is not likely. Besides, I can't bring my spouse back - and given the alternative - I would not want to bring him back to face it.
If your treatment options are interferon and the like, I can certainly relate. It did not produce effective outcomes as used in cancer treatment and it is not with Hep C. The best they hope for is remission of five years. Though I was on a chat sight where a person claimed to be free of hep for seven years after two rounds of interferon.
I have two stories: One man used the prescribed treatment for six months and willing to go the 12 months on interferon - pegasus. He had a liver transplant in Aug 06. Had great outcomes - home in record breaking 13 days! The standard protocol of meds with step down at six months was prescribed. They did biopsy of liver at six months. They lied to the patient(by not telling him)and told him to take the interferon after ten months due to rapid increase of Hep C virus. It had returned to the new liver and with a vengeance. You see patients are put into ongoing test groups... some with placebos and others with "x" treatment; etc. (with variations) After interferon for six months the treatment was decided to be not worth due to statistic of no appreciatable deminish should he continue. It has now been an additional six months - I have asked if they would put him back on list or what. There doesn't seem to be a game plan - at least it hasn't been mentioned my direction. He still must travel to out of area center for simple tests etc.
The other story is of a guy who had a tumor, malignant, in upper colon. Discovered with pain and bleeding. He is told through aditional testing that his cancer has gone into the lower lobe of his liver. They operate and take the section of colon and later the section of liver. His physician of course recommends chemo followed by radiation for six months. The patient denied treatment, instead changed eating habits to fresh fruits and vegies, and vitamins. Particularly the gutemate (spelling)compounds. He was scheduled to retest in six months. Doctors just sure he would be full of cancer etc. He tested clean of cancer. It is now his third year, still cancer free.
My take on the first guy is that the virus was living (disguised) in the blood, his blood. That a transplant with his blood transfused out and new "clean" blood in; might do it.
My take on the second guy is that his body did the right thing in quarantining the cancer (toxins). When his colon became blocked, the toxins backup to the liver and the body quarantined it to the lower lobe. Once removed, the body did just fine. The aid of fruits and vegies and the gutemate compound spead healing and nurtured his ailing body.
Millons more people will need the treatments that CAN be given. Changes to the "System" must be made in order for cost, effectiveness, choice, and successful outcomes to prevail. If I could use my husbands case to help, but not to add to the burden of the pitfalls of the same system. The lawyers get fatter and nothing changes, it just happens to more of us. It sure doesn't pay to get sick in our country.
Do you realize that if I were a murderer and was later shot; they could perform all sorts of dna, rna, bio testing to examine who I was and where I might have gone. But if you need that same testing for an ailment or to prevent an ailment; you can't afford such testing, cause it isn't covered under insurance. Like myself, I would like to have a series of test performed at differing intervals of my hormonal levels. So that I might know what MY body is going through, what it's natural rhythm is. Then it could be "regulated" if needed - say for menopause or thyroid problems or whatever. They have the technology but it is not covered, it is not routine, necessary per insurance. For me, I have rage fluxuations and I know that it is my body changing from time to time. I have found that vitamin B12 helps by accident. I also no that I am not crazy or instable, but I can not control the rage, I surpress it; but do not control it. I first started these rage feelings after having my first child, a son. (my take on this is that I have an imbalance to hormones and that I am not on a "normal scale". That my son's differing hormones caused changes in my body. Where I first noticed these differences in me during pregnacy and especially afterward.) I could imagine it is what happens to those people you here about that suddenly kill their children or spouse or whatever. It is a rage burning inside - a tension. An imbalance of the bodies system. No doubt from the odd foods we eat the the treatments of our food.
In your area do they offer a "meals-on-wheels" kind of thing? Metro rides for disabled, etc. Pharmacy delivery? Somehow the guy in the first story is able to have his house cleaned once a week and a nurse come out once to twice a week. He also has a mother of 86 who is ill and a son who is 12. The mother on medicare and the son on medicade. They each get a cleaning and a nurse!
Another woman claims the metro bus in our area will come to your house and take you anywhere in the city for free if you call ahead to place an order.
My area does not sponser meals on wheels. And it seemed we were never able to gain advantage of any of these offerings. But apparently they can be had. Try checking in your area to see what is available. And have your physician recommend you get set up. With the referral in hand, perhaps you could get some of this type of help for you and your wife. Rides to appointments and some help with general cleaning and laundry.
The "Pain Scale": It is a hoot. They must have developed it for the pediatric patients. My husband caught on that if the number wasn't over 8 you were not going to be listed as severe. Tollerable pain is under 8. The kind that a simple asprin should take care of.
Addiction to drugs is often caused from prescribed meds. However, if the patient is seen by a particular doctor, he/she should know the difference of pain and high. My husband was fortunate to have a general family doc who would go out on a limb from time to time. Do research or contact a fellow specialist. He understood that he would otherwise die without the liver and that the pain was NOW that it cause secondary problems with meds and health. He was the only means of pain killer my husband had. All others were disappointed he "needed" pain killers and would not prescribe. The literature on the table in one hospital in-stay, suggested the patient had the Right to Pain Med. That the patient would not become addicted and that the staff knew this. My husband made photo copies of it and handed it to each specialist when the frown came on this subject.
Each drug we use has an effect to us. It is a shame that the pain meds one needs isn't given when meds that cause so much more harm are given out like candy. The Spiractone? (can't remember the name) it's a type of diuretic - hormonal base. It has some nasty side effects, but the doc's wont' hear of it. It is standard protocol; but there are other types available when you refuse it. You'll get "written up" when you do; but it is worth it. Even the safety warning label shows many adverse side effects - which the docs claim isn't happening to you. Like tremors, swollen tender breast, increased constipation, high blood pressure, siezures to name a few. My spouse had just started taking them on one occassion when he lost control of the vehicle and side swiped two cars and landed in two trees just a few feet from some neighbors front door. The paramedics said he was having tremors - that if continued could have a heart attack. He had them when ever he took the pills. The nurse coordinator at the first transplant center claimed it couldn't, happen must be something else -- suggestive of not following protocol and that patient must be taking other meds or illegals to have such a claim.
My heart goes out to you with all that you endure daily. It is difficult and taxing to your system. You must eat and I sure recommend vitamins or herbs - a good diet. Get a physician's desk reference guide and look up your meds. There is a good nutritional book with references to herbs and vitamins - I picked up at a local Hy-Vee store. "Prescription of Nutritional Healing" Phyllis A. Balch, cnc & James F. Balch, md... takes time to digest, but we did find things like: that, Niacine was bad for my spouse. The woman is a naturalist/nutritionist while her husband is a doctor. Their colaboration is a great resource.
The mind is a great resource as well. Try to meditate, a yoga; ying/yang sort of thing. Consentrate on just your toes and wiggle them, meditate toward just that one thought. Then try to move up to your legs etc... take several minutes to do it... try it again... you will find that you can start to control some aspect of your minds healing powers. Maybe if you try it just after taking some vicotin or whatever your pain med is. You must try to be relaxed to meditate. Pain causes you to tense up.
With my spouse, I tried to pass the meditation through my hands. I would rub under his sore area and gently but forcefully move the tension from the painful area. Sometimes it helped a lot, other times it just felt a little better. His legs would swell with fluid and the fluid in the abdominal area was extreme. The gallbladder had stones the size of golfballs, his liver swollen and the pancreas swollen from eating all the platlets. So take your pick, it hurt alot everywhere. The large fluid retention caused strain on the back and feet as well.
Has the VA gotten better than private practice these days? I am hearing more people like yourself who seem more comfortable with the VA. My biases come from the 70's and early 80's where I found it to be pretty harmful to "check in".
Who forced you to switch doctors? Plan changes? Government changes?
This is my country. This is your country. I say we need to fight right here to gain our freedom(s) and fight the terrorist right here. Not overseas, but right here where you are. Where you and hundreds of thousands are not getting the proper diagnosis and treatment for them. Time we stop the corporate treatment of our health and welfare. We are not comodities to be put into some assembly line of medical treatment. I deserve more, You deserve more. The terrorist are those who keep you from the medical treatment or harm you with their medical treatment.... and, no Gov. Health care is not the Answer.
Tell me more of your specific ailment. Yours is the swollen, herniated discs of spine? I have known of several who have had back surgeries. I would say that would be a very last resort - for me anyway. But there is so much that is known for back stress relief. Some relieves are very simple as well. Take time but still affective.
Merry Christmas and a painfree new year!
Ian and all, I just made a
Ian and all,
I just made a Diatribe about Medical Care and Democracy and would appreciate your comment. I was in the midst of a painful procedure recently and told the doc to stop and he would not respect my request. Let's say I was "inspired." So much for my rights being respected.....
Keep the good fight. You've brought up an important topic and hope that you will continue. You are not alone! Your post seems to have the most comments that I've seen since joining so obviouly you're helping to make a difference.
Beware of Flexeril First of
Beware of Flexeril
First of all I’d like to warn everybody about a medication for muscle spasms called Flexeril. It is only safe for short-term use. It surely would have been good for my doctor or pharmacist had told me that when it was prescribed. It elevated my glucose levels and increased the effect of my thyroid replacement. I got toxic and damn nearly died. I did have a swell out-of-body floating, flying experience though. It left me with painful, chronic diarrhea, which no narcotic can stop and only Heaven knows what else it damaged. I haven’t been right since and fatigue is a real problem. I also seem to have developed intolerance to thyroid replacement meds. Citracel helps the pain and diarrhea more than anything. I asked my doctor why Flexeril is only safe for short-term use (which is how long?) and she said that they probably only did clinical trials for a short time. I don’t know what’s more frightening, the short clinical trials or her guessing at the WHY.
Also, beware of NSAIDS. One of the little known side effects is swelling of the extremities. It’s very hard on the liver as well. If you must take it, drink a lot of water.
Water is also very helpful for constipation. I’ve a friend who swears fish oil helps her constipation. Maybe grandmother knew something when she insisted everybody take cod liver oil. If anybody knows a good treatment for diarrhea I’d be grateful.
Since the issue of organ donations, and the lack of them, has come up I’d like to encourage everybody to consider bone and tissue donation. Sometimes it’s the only viable thing left in our ravaged bodies. Bone and tissue donations help burn and trauma patients. Since trauma is one of the reasons for chronic pain it seems appropriate to try and help others in some way.
Lastly, I’d like to encourage the use of the term “intractable pain” instead of chronic pain. I believe it’s more appropriate to use when ones pain cannot be readily treated. Chronic pain has such a negative connotation. We’ve enough negativity in our lives as it is.
CATZONED, FEDUP AND
CATZONED, FEDUP AND OTHERS:
"I asked my doctor why Flexeril is only safe for short-term use (which is how long?) and she said that they probably only did clinical trials for a short time. I don’t know what’s more frightening, the short clinical trials or her guessing at the WHY."
THE PHARMA COMPANIES ARE NOT REQUIRED BY LAW TO REPORT STUDIES THAT 'MIGHT NEGATIVELY INFLUENCE THE FDA'S ACCEPTANCE OF THEIR NEW DRUGS". STILL, DOCTORS ARE TAUGHT TO RELY ON THOSE STUDIES! Oops - sorry for the caps; typing lying down.
Here is a good article on this, tho not on Flexeril specifically:
"Child Suicide No Deterrent for Profit-Hungry Drug Maker"
By Shelley Jofre, CorpWatch. Posted August 1, 2007
http://www.alternet.org/authors/8527/
That should enable you to look it up. It was posted on Alternet. You can also write to the FDA for info on a particular drug and they'll send you what they have, but LOOK FOR STUDIES NOT DONE OR BACKED BY THE PHARMA COMPANIES OR THE FDA!
Here is another:
A dangerous dose
The machinations of the drug industry add up to biased data and staggeringly high prices for consumers
http://www.boston.com/ae/books/articles/2004/09/05/a_dangerous_dose/
"Also, beware of NSAIDS. One of the little known side effects is swelling of the extremities. It’s very hard on the liver as well. If you must take it, drink a lot of water."
More people die of NSAID over-use than of almost any other medication. They are DANGEROUS, especially taken in large amounts, and over time. Tylenol (acetaminophen) can destroy your liver very quickly in too large a dose, and aspirin and other NSAIDs can cause internal bleeding - sometimes fatal levels. Water won't help if you're overdoing them, and they should never be taken in large doses for long periods. There are other meds!
"Water is also very helpful for constipation. I’ve a friend who swears fish oil helps her constipation. Maybe grandmother knew something when she insisted everybody take cod liver oil. If anybody knows a good treatment for diarrhea I’d be grateful."
Water helps, but a good stool softener like Docusate Sodium is also very useful (there is a docusate potassium for people who need to watch their salt/sodium intake) - otherwise it can be like trying to pass rocks! Fish oil, I'm not sure of.. I know it can cause an oily, uncontrolled discharge, though. Here is a recipe from one of my doctors that helps. It's for people on regular opiates, but should help someone with hypothyroid constipation as well:
Ingredients: 1 lb raisins
1 lb figs (may substitute dates is not concerned about seeds)
1 lb prunes
1 cup brown sugar
1 cup lemon juice
4 oz senna tea leaf
2 1/2 cups boiling water
Brew tea by adding water to senna tea leaf and steeping for 5 minutes. Add 2 cups of the brewed tea (strain through cheesecloth) to the fruit ingredients and heat to boil, boiling for 5 minutes. Place in a food processor or blender, add the lemon juice and sugar and blend. Store in the freezer indefinitely. It can be stored in the fridge for several weeks. Start with 1 Tbsp. daily, increasing as needed.
Senna is used in a lot of commercial laxatives, but this recipe is natural, and it works! If you're allergic to any of the ingredients or have a bowel disorder, ASK YOUR DOCTOR BEFORE USING THIS! It couldn't hurt to ask anyway.
"Addiction to drugs is often caused from prescribed meds."
NO!!! Addiction is rare when opiates are taken for pain. This is one piece of propaganda you need to be aware of. There is a vast difference between "addiction" and "physical dependence"; there is also a thing called "pseudoaddiction" where normal behavior of a pain patient is taken for signs of addiction - it is NOT. Here are some article about this; PLEASE read them:
Interpretation of "Aberrant" Drug-Related Behaviors" by Dr. Frank Fisher
http://www.doctordeluca.com/AberrantDrugRelatedBehavior-Fisher04.pdf
"SIDE EFFECTS OF PAIN MEDICATIONS"
BY LARRY C. DRIVER, MD
http://www.hcvets.com/data/hcv_liver/side_effects_of_pain_medications.ht...
You can look up many more things like this at :
http:www.doctordeluca.com/
This is an incredibly rich URL full of great resource articles!
"Try to meditate, a yoga; yin/yang sort of thing.
Maybe if you try it just after taking some vicotin or whatever your pain med is. You must try to be relaxed to meditate. Pain causes you to tense up."
I've been a martial artist all my life, and I do meditate. I can stop minor bleeding, and even "step aside" from pain - block it, more or less, but I can't do that and do ANYTHING else. I also follow a Native American spiritual path, with some other disciplines, one similar to Huna, and my wife and I do massage; it just has a limited use in nerve damage like mine. I'll publish something with more detail about my injuries here soon. It's called "Pain: the Emotional Journey".
"You must eat and I sure recommend vitamins or herbs - a good diet. Get a physician's desk reference guide and look up your meds."
I have a PDR, and I use the Internet a LOT. I ALWAYS learn all I can about a med before I agree to take it. As for diet - my wife and I are on SSDI, and we only qualify for $10 a month in food stamps. We live in a town of 5,000, and there are very few programs of any kind; most of what there was have been defunded. Also, the VA is who forced me away from my usual doctor in a fit of drug paranoia; there are others in the same fix. They leave few avenues open to fight it, but I'm working on it.
Regarding diet, because of my limited mobility after losing most of my meds, I can't stand long enough to wash dishes, cook a meal, wash up again, etc, and we often can't afford real food, the better food. My wife is down to about 80 lbs, and I am 50lbs underweight. I do what I can.
"Has the VA gotten better than private practice these days? I am hearing more people like yourself who seem more comfortable with the VA."
No - in general they're worse. And the US medical system is dead last in quality of care now in First World countries, even falling behind some not considered First World.
Folks, I'm sorry but I have to go for now. The Creator bless you all, and keep a watch here. I anticipate the opening of a new blog soon that should have lots of good info for pain patients. FIRST WE MUST RID OURSELVES OF THE MYTHS AND PROPAGANDA. THEN WE CAN HELP EDUCATE OUR DOCTORS AND FAMILIES!
Illegitimis non carborundum!
NVWHTOHIYADA!
Ian
Organ donors are becoming
Organ donors are becoming increasingly difficult to find. My ex-husband who will be 75 in February, and has been on dialysis for 3 1/2 years. The doctors have told him that he is on the list for a donor but that it will be 3 more years before he will get a kidney. He is weak now. His blood type is 0+. He will pay all expenses. If you know of a donor, please contact me at dukecitysunset@msn.com
Thanks!!! Marg
__________________________M. King
I'll keep an eye out for
I'll keep an eye out for you. It seems to me you could file a wrongful death suit at the very least! Have you checked with any lawyers? Was this a VA hospital or civilian?
Physicians have been disciplined and sued for failure to treat pain. There was one who gave a dying cancer patient aspirin and nothing else! What a medical board can do depends on the state you are in. Where are you?
My email is heyokat@gmail.com Please feel free to write me! There are a couple of people I can check with. No one deserves to die like that. I can't guarantee anything, but I can try.
I have had my own meds cut by more than 2/3 by a new "Pain Specialist" I've been forced to see at the VA - no choice in the matter; I was taken away from my regular doctor, which is illegal anywhere else. This guy literally doesn't know what he's doing. I am sole caretaker, housekeeper and everything else for a wife in end-stage COPD, and the resulting loss of mobility has endangered her life as well as mine, as uncontrolled pain plus monthly withdrawals, and especially that first one, can cause heart attacks, strokes and other things. Still, I refuse to keel over or knuckle under.
DON'T stop fighting!
Ian
Illegitimis non carborundum!
Dear Marg and all, I put out
Dear Marg and all,
I put out your husbands”s need for a kidney to everybody in my address book, sent it out, and ask everyone to do the same (O+ blood type). It’s the good karma and compassionate thing to do. I lost my oldest brother for lack of a liver so I know the heartache of that situation. So everybody please do the same. Maybe it’ll get people to sign up for organ donation who normally haven’t given it a second thought. And please, if you do decide to become a donor, tell your next of kin. In the end it’s their decision that counts, not a piece of paper that you drafted with a lawyer. Next of kin gets considered before a piece of paper. Crisis can happen in a heartbeat and family wishes are heard before a lawyers document can be found.
I found out something interesting recently. Bone marrow donors actually need to go to where the potential receipiant lives. It’s apparently not like organs which can be flown from other places. So if there are any potential donors in California please let me know and I’ll get in touch which the person who needs it: catzoned@aol.com. She has acute leukemia.
Now we really need to start asking our political candidates where they stand with stem cell research and if they are willing to help fund it. We are funding AIDS in Africa and not taking care of our own at home. I’d not begrudge Africa a dime when it comes to help with AIDS but we at home need care as well. Look at Ian, who is trying to help us all with our problems and apparently the VA is shafting him royally. As near as I can figure, the only possible good that this occupation of Iraq can do is draw attention to the lack of decent and adequate Veteran care. Just think of the thousands of injured Vets who have gone from being functional people to intractable pain patients. Is it going to take a senseless war to do that? It makes me shudder to think about it.
Thank you for what you are doing, Ian. May the Powers that Be have mercy on you and give you strength and relief. You’ve my gratitutde which won’t help your situation but you’re in my thoughts and prayers. I am thankful for your blogs and information.
Thank you Cora Lynn.
Thank you Cora Lynn. Ricky is my ex-husband but I still care deeply for him. His need for a kidney is shared by many. Our leaders could care less. The lack of descent care for our military veterans is a disgrace.
__________________________Bone marrow transplants seem to be as hard to find as organ transplants. California has Medi-Cal. If I'm not mistaken, your friend may have Medi-Cal coverage or she could be eligible? I am not sure where to look for information or a donor. I will try again to find something on the internet. If anyone has information about kidney donations or Bone marrow transplants please e-mail me at dukecitysunset@msn.com
Take care of you.
M. King
catzoned, "Thank you for
catzoned,
"Thank you for what you are doing, Ian. May the Powers that Be have mercy on you and give you strength and relief. You’ve my gratitutde which won’t help your situation but you’re in my thoughts and prayers. I am thankful for your blogs and information."
Nvwhtohiyada, tohiju! ("Peace to you, friend" - Cherokee, or more correctly, Ani-Yunwya). I try; it's just all uphill lately. Some Internet friends and I are putting together a Chronic Pain forum that will be open shortly. We started one, were almost ready, and we wrote and posted so much it crashed the software. This new forum 'ware is more robust. So of course, I don't understand it at all, but someone does, and I can still write and post. *S*
FYI - Still fighting. That Dr. Jerk at the VA added 2 pain pills a day - still VERY inadequate - and refuses to bend on anything else, so now I start annoying higher-ups, from the VAMC director where I am to the Secretary of the VA. If I've gotta suffer, they are too...
Ian
That is interesting about
That is interesting about the transportaion of bone marrow. My sister-in-law was waiting for her donation to arrive when it was discovered that the donor's doc screwed up simple procedure to a perfect match. The pucture an artery and damaged the donor from giving marrow and I believe the person suffered damage to the arm. The patient died within a month of the incident.
http://www.marrow.org/ABOUT/Connecting_Patients_w_Donors/index.html
Says they help locate donors for bone marrow - since 1987!
I am reading regulation guidelines for transporting marrow and it would be frozen unprocessed to the recepient - the testing, manipulations, would be done where the transplant takes place.
A fresh donation is not frozen. The faster a transplant takes place the less risk for bacteria etc to interfere. Warm tissue as opposed to fridgid tissue.
I would check your source for the local only option for transplant donor(s).
Pain Patient's Bill of
Pain Patient's Bill of Rights
You have a right to:
-Have your pain prevented or controlled adequately
-Have your pain and pain medication history taken
-Ask how much pain to expect and how long it might last
-Have your pain questions answered freely
-Develop a pain plan with your doctor
-Know what medication, treatment, or anesthesia will be given
-Know the risks, benefits, and side effects of treatment
-Know what alternative pain treatments may be available
-Sign a statement of informed consent before any treatment
-Be believed when you say you have pain
-Have your pain assessed on an individual basis
-Have your pain assessed using the 0=no pain/10=worst pain scale
-Ask for changes in treatments if your pain persists
-Compassionate and sympathetic care
-Receive pain medication on a timely basis
-Refuse treatment without prejudice from your doctor
-Seek a second opinion or request a pain care specialist
-Your records upon request
-Include family in decision making
Remind those who care for you that pain management is part of your diagnostic, medical, or surgical care.
Fight for the Living! The
Fight for the Living!
The entire country is in for a huge fight and I will not believe for a nanosecond that Carl Rove is the only strategist in the country. We need to start coalescing our ideas now for the 2008 election to send to our Congress. Of course, our current Congress may need to be kicked to the curb. That’s for you and your State to decide. Other topics will be a fair tax rate, the environment, education, and stem cell research. Common sense must prevail over religious beliefs. As a healthcare and patient advocate I believe that stem cell research is essential. It’s a quality of life issue. It’s an economic issue as well (disability income is a pittance and I also support indigent care). People who are treated and cured of disabling diseases to regain health are people who can return to the workforce and pay taxes instead of being a tax dollar recipient. If you are religious then you were taught that god created Adam and Eve. Since then - people make other people. It’s called reproduction. Also, an embryonic cell may or may not create a functional human being. Some cells deviate from norm. Furthermore, the fastest way to kill an embryo is to try and implant it in a uterus. It has a 71% failure rate. That is a dismal failure rate. Why it makes sense to send living, breathing, and functional people to die and be maimed in war is okay and then get perturbed about saving cells that may or may not survive just totally escapes me.
Yes, we should impeach this administration. We at least must prevent another like it from happening in 2008. Patients are voters as well.
Bush's refusal to allow the
Bush's refusal to allow the government to fund stem cell research is just a sop thrown to the religious Right whose organization and credulity he used to further his political aims. He's NOT religious, and that bit about "...all life is sacred" out of his mouth is pure, conscious and deliberate hypocrisy. If all life were sacred, the Iraqis wouldn't be killed off like so many annoying insects who happened to breed over something he and his fellow elites want, nor would we have military stationed and dying over there, much less mercenaries, which is an obscenity. AND we wouldn't have torture, or over 800 gulags built by KBR connected by trains with hand and ankle manacles built into the walls and floors of the cars, and on and on and on.
I still expect this election to be pre-empted or otherwise negated, and for Bush to activate his EO that makes him King of America.
Ian
because Bush didn't allow
because Bush didn't allow the government to fund stem cell research doesn't mean research stopped. he didn't make research illegal. who in their right mind thinks the government should be in charge of any kind of research? what does the government do successfully? look at the mess social security is in and how the government handles our tax dollars before you answer that. it's sad that there are so many people willing to pay more and more taxes to allow an inefficient government take over every aspect of our lives.
catzoned Sorry - I think I
catzoned
Sorry - I think I posted a reply from another article I wrote to you, at least in part. Chalk it up to a)this blog doesn't show the post we're replying to, b)it doesn't attach a reply to the comment it's meant to answer, and c)the damned VA doc I'm being forced to see for my nerve damage and pain took away more than 2/3 of my meds without notice, took away the weaker muscle relaxer and left me diazepam for the muscle spasms, the withdrawals once a month when the inadequate amount of pain med he gives me runs out, and so my memory and concentration are screwed along with my coordination and perfect pitch.
I HATE being a part-time idiot. My only consolation is that it's only MOST of the the time lately...
Anyhow, apologies.
Ian
Ian, you've nothing to
Ian, you've nothing to apologize for, it's all okay. Just don't confuse me with someone who has constipation, Ha! That Flexeril did me serious harm and doubt I'll see the Land of Constipation again.
I get brain fog from fibromyalgia and that's a source of irritation for sure. I sure hate the slow brain syndrome myself.
Can you ask to see an Attending physician at the VA? Most of them are teaching facilities I think and maybe you need the head honcho instead of a resident. All my best with your problems. I sure appreciate what you're doing here. Thanks.
I believe..... If somebody
I believe.....
If somebody is going to support war they should automatically become mandatory organ, bone, and tissue donors - whatever the viable option may be. If anybody claims to support our Veterans, then do the patriotic duty and leave your body parts for our Vets who may be victims of burns and trauma from the darn wars!
UNOS did have it determined
UNOS did have it determined that all patients are DONORS unless next of kin says otherwise.
When I was at the license B the last time I noticed all the literature, but failed to see the attendants offer the form.
There is certainly something to be said of such a place as a war zone and donations of all sorts... that region ought to be "over stocked"; but I would bet the statistics would not bear this so.
Nope. I can only see my
Nope. I can only see my PCP, who is an established physician, but I can't see him for the chronic pain any more. I am forced to see only the 61 year old opiophobe they forced me to see, or I can go elsewhere. He's hardly a student; just another jerk who only sees that he has to get me off "those horrible opiates". I'm fighting, but having to go through the Congressional rep to do it. Otherwise, there is no system for complaints in place, really. I can send one to a higher-up, even to the Director of the VAMC in Portland; it would just be put in my my, and sent to the jerk. Oh, I'm seen at a satellite clinic.
I am looking into a regular pain clinic, but I sdon't see much hope.
Ian
Ian, Also, if there is a
Ian,
Also, if there is a student therapuetic massage clinic near you, I suggest you try that. In some states these are actually licensed places where deep massage and muscle rehabilitation and nerve rehab is done. I suggest a student clinic because some of them offer a cut fee.
Ian, If you afford it, try
Ian,
If you afford it, try Osteopathic docs. They learn more about pain management than MDs. Some can do manipulations and trigger points if that would help.
All my best,
Catzoned
Well, I went to the doc and
Well, I went to the doc and made an apparently ridiculous request for more muscle relaxation medication. I get enough (sort of) for the daytime but not nighttime. Of course she said NO Way. I take pain medication for the spinal injuries but also have fibromyalgia. The spasms bounce me out of bed at night and I’m losing sleep. So she is sending me to the Sleep Study clinic instead of just treating the darn spasms that’s causing the missed sleep.
Again and again I wonder what I did wrong to deserve such bad karma if that’s what it is. How the heck did we all get in such a mess? And can any one to help? We have the Patient Bill of Rights, which says our pain is to be treated. Then we have the DEA busting doctors who do try to help. What is it going to take? Certainly not an act of Congress. We had one and it’s not helping.
What is also disturbing me greatly is that the Iraqi conflict is creating more and more burn and trauma patients. Have the Veterans valiantly performed their duties to be condemned to a lifetime of suffering from pain?
Ian, kiss and hug all those kitties for me.
Just a note to all who read
Just a note to all who read "Ian MacLeod's" essays and blogs ---
I am a friend of "Ian's", I am also a physician and a pain relief advocate. My CV and bona fides are all over the net - do your own search to check my credentials.
I have reviewed "Ian's" medical records which he allowed the VA to release to me. My experienced reading of these documents, and other correspondence he and other members of his family have had with VA and Congressional representatives is that "Ian" presents his predicament exactly accurately.
His medical records confirm his presentation of his situation. This man is not exaggerating; unfortunately, he is not dramatizing in his written accounts.
I am horrified at the callous, clumsy, and substandard medical care he has received at the hand of our Govt. He is beyond question a "deserving" and legitimate pain patient - the VA medical record proves this.
That's all I want to say here. "Ian" has my complete support.
__________________________..alex...
Alexander DeLuca, M.D., MPH
Senior Consultant, Pain Relief Network
Pain Patient Forum: http://painreliefnetwork.org/forum/
War on Docs blog: http://doctordeluca.com/wordpress/
Wow, Alex! Thank you for
Wow, Alex! Thank you for the backup!
I know sometimes it all looks like a bad soap opera script to some people - I suspect the VA people feel that way when they hear I CAN'T come in right now because of my wife's condition. At least, they ignore it and act like I never said anything, and like my failure to do what they want is willful disobedience (which it is, but there's good reason, and I'm no longer military or a child).
Anyhow, every little bit of corroboration helps, and this is great. Good to see you here!
Take Care!
Ian
Thank you Ian and Dr.
Thank you Ian and Dr. Deluca! Validation counts! Ones sanity is direly tested when chronically assaulted by pain. It makes you feel isolated and alone as well. Well, we're not alone here, now are we? This has been the most hit blog in the site!
Keep it up, folks and don't be afraid to speak. I was told for years that I had a "creative imagination" when I actually had fibromyagia. Those were maddening days as I know I just don't invent disorders. There is no cure for fibro but at least people don't call me crazy anymore. I do get shit for being a pain patient from the clinics to this day. They treat me as though I'm a lesser life form than them. I know where they are coming from. I was a nurse for a long time. I gave the drugs, I didn't take them. Well, bad karma on me folks. Ironically, it was a Neuro patient who made me a perpectual patient which was a huge role reversal. Okay, I repent.
We've heard from a doc and a nurse. Shout it out, folks! You are a mere lump of biology that is subject to malfunction. Empower yourselves for your rights to be treated as a human being who happns to have pain instead of just a pain patient who happens to be human!
The main problem with a lot
The main problem with a lot of hemorrhoids remedies (and most traditional medicine) is that it is designed to mask the symptoms. Certain herbs can work with our body to eliminate the root cause of hemorrhoids. Eliminating the causes of hemorrhoids will relieve the symptoms naturally. Why do people wast valuable time and money on medicines that will only temporarily 'fix' the problem? I think that they just don't know. Well, I found out the long, hard way that there is a natural treatment for hemorrhoids.