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Get Serious About Relieving Chronic Pain January 17, 2006 1:39 PM

January 10, 2006
Personal Health    
Let's Get Serious About Relieving Chronic Pain

Patients with debilitating pain from chronic illness, accidents, surgery or advanced cancer have long had problems getting adequate medication to control their pain and make life worth living.

Now the federal government, and especially the Drug Enforcement Administration, is working overtime to make it even harder for doctors to manage serious pain, including that of dying patients trying to exit this world gracefully.

In an article in the current New England Journal of Medicine titled "The Big Chill: Inserting the D.E.A. into End-of-Life Care," two specialists in palliative care, Dr. Timothy E. Quill and Dr. Diane E. Meier, state that despite some physicians' commitment to treat pain and despite the effectiveness of opioid drugs like OxyContin and morphine, "abundant evidence suggests that patients' fears of undertreatment of distressing symptoms are justified."

They continue, "Although a lack of proper training and overblown fears of addiction contribute to such undertreatment, physicians' fears of regulatory oversight and disciplinary action remain a central stumbling block."

Obstacles to Relief

In addition to a case before the United States Supreme Court, Gonzales v. Oregon, that threatens to undermine Oregon's Death With Dignity Act, the D.E.A. has recently increased raids on doctors' offices, confiscating files and arresting doctors on charges of overprescribing narcotics to patients who are addicts or drug dealers.

Most of these physicians are compassionate people trying to help suffering patients but are sometimes fooled by clever addicts, drug dealers or undercover agents who fake their pain.

Should the court rule against Oregon, the D.E.A. could turn to all physicians whose patients die while getting prescribed opioids or barbiturates, even if the drugs were administered only to relieve intractable pain, not to hasten death.

Yes, there are bad apples among members of the medical profession. There are some doctors who charge for medical exams that they never do and provide phony patients with prescriptions for narcotics to feed their habits or sell on the street.

But should all physicians be subject to intense scrutiny by the D.E.A. and risk arrest and prosecution, leaving legitimate patients to suffer intensely or scramble to find other doctors willing to risk taking them on?

Doctors have no certain way to measure patients' pain other than to ask them. Patients should be asked to rate their pain, say, on a scale of 1 to 10, with 10 being the most intense they can imagine. "Model Guidelines for the Use of Controlled Substances for the Treatment of Pain" were established in 1998, and every physician who prescribes narcotics should know them by now. These guidelines emphasize that documentation is critical to proper pain management.

With patients who are prescribed strong painkillers, doctors first are supposed to obtain a medical history, perform a physical examination, ask about addictive behaviors and whether other treatment options have been tried, and fully record what they find.

Prescriptions for controlled substances like narcotics cannot be refilled automatically. When a patient asks for a new one, a well-documented follow-up visit is necessary. The doctor should ask about the kinds and amounts of painkillers being taking, side effects, performance of daily activities and aberrant drug-related behaviors.

Dr. Jennifer P. Schneider, a pain management and addiction medicine specialist in Tucson, gives this example: "Back pain today is 4/10, walks the dog 15 minutes daily, constipation is controlled with Senokot-S, patient is on schedule with his meds." She advises physicians, "If a patient lies about his medical problems and turns out to be a drug abuser, at least you've documented that you were acting in good faith."

A Fear of Prosecution

The growing number of arrests of pain management specialists is exacting high costs for patients, physicians and medical insurers. Some doctors order costly but unnecessary diagnostic tests so they can show the D.E.A. a reason for prescribing strong pain medication.

Many doctors are simply unwilling to prescribe narcotics, no matter how much a patient suffers. Ignorance, as well as a fear of the D.E.A., plays a role. For example, the surgeon who performed my double-knee replacement a year ago told me, in reference to OxyContin, a synthetic opioid: "I don't like to prescribe these drugs. Patients have too hard a time getting off them."

Well, sir, if you never prescribe them, then chances are you never learned how to help patients stop them. Many doctors and patients fail to understand the difference between physical dependence and addiction.

 

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con't January 17, 2006 1:40 PM

An addict uses a drug to get high, becomes tolerant and needs ever-increasing amounts to maintain that high. Patients taking narcotics for pain don't get high; they get relief from their pain, and when larger doses are needed, it is usually because their pain has become more intense, as often happens in patients with advanced cancer or degenerative diseases.

Physical dependence occurs in almost everyone who takes a narcotic for two weeks or more. The body becomes adapted to the presence of narcotics (that is, becomes physically dependent on them). A patient cannot go off them abruptly without suffering serious withdrawal.

A Gentle Weaning Process

I asked Dr. Schneider how to go off narcotics safely. She suggested cutting back 10 milligrams every three days (the exact amount would depend on the dose a patient is on). If at any point in the weaning process my pain became more intense, I was to go back to the last dose, wait a week, then try to resume the weaning.

As I neared the end, the cutback was five milligrams every three days. Then the dose was down to nothing, and no withdrawal symptoms, either.

Having heard only about those who, like Betty Ford, got hooked on painkillers, many patients are afraid of becoming addicted if narcotics are prescribed. But it is the rare patient who becomes addicted, and it is nearly always someone with a history of addiction, typically to alcohol.

Even with dying patients, the families and physicians often shy away from narcotics for fear of addiction, as if it mattered whether someone near the end of life - in desperate pain or extreme agitation - became addicted to the morphine that could provide almost instant relief.

Proper pain management for dying patients can facilitate important communication between patients and their loved ones and provide what most people would call "a good death."

"Pain is a common symptom in patients nearing the end of life," with up to "77 percent of patients suffering unrelieved, pronounced pain during the last year of life," Dr. Timothy J. Moynihan wrote in The Mayo Clinic Proceedings in 2003.

In their current article, Dr. Quill of the University of Rochester School of Medicine and Dr. Meier of Mount Sinai School of Medicine stated, "Allowing D.E.A. agents, trained only to combat criminal substance abuse and diversion, to dictate to physicians what constitutes acceptable medical practice for seriously ill and dying persons" may make doctors increasingly reluctant to prescribe needed medications and "end up abandoning patients and their families in their moment of greatest need."

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 January 17, 2006 1:46 PM

"Pain is a common symptom in patients nearing the end of life," with up to "77 percent of patients suffering unrelieved, pronounced pain during the last year of life," Dr. Timothy J. Moynihan wrote in The Mayo Clinic Proceedings in 2003.

Talk to your doctor now.  Don't wait until you are one of the 77%.  Make sure that your doctor believes, practices, and knows how to administer palliative care. 

In fact, your doctor should be adequately addressing your pain now.

gentle hugs...

 [ send green star]
 
I suffer with spastic paraplegia and am always in pain February 05, 2006 3:01 AM

I suffer with spastic paraplegia and the spasms give me intense pain. I don't know what that means in regards to the end of my life. I just live with the pain and keep taking my medication.

I am a good-natured person and have learned to live with my illness.

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Sunday 2/5/06 February 05, 2006 5:02 AM

Can relate to you Dawn and Rachel as I too live with intense pain, due to 21 surgeries and degenrative spine problems.  For severe muscale spasms my doctor perscribe Neurontin which did relieve them to some extent and am on a narcotic to relieve pain.  It is a shame that a few can ruin it for those of us struggling to deal with intense daily pain.  It is also a shame that once again the government feels they have to come into another facet of out personal lives.  It is not enough that they are in our bedrooms, our religious lives where do they stop?  [ send green star]  [ accepted]
 
 February 05, 2006 5:45 AM


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February 2006

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Power Over Pain is a grassroots public awareness campaign sponsored by the American Pain Foundation and the American Alliance of Cancer Pain Initiatives. It is designed to bring attention to the problem of the under treatment of pain and make the effective treatment of pain a priority in our nation. The campaign is conducted by state and community based organizations that are able to target outreach activities based on their local needs.  State Pain Initiative organizations that are members of the AACPI are major players in the Power Over Pain Campaign. As of 2005, the following State Pain Initiatives have been involved in Power Over Pain activities: Connecticut, Florida, Kansas, Louisiana, Ohio, Maryland, Massachusetts, and Vermont. Pain Initiatives in the District of Columbia, Missouri, New Mexico, and Washington / Alaska will participate in Power Over Pain in 2006.


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 February 05, 2006 5:59 AM

 Please continue to post your stories about pain.  It is important for the world to know that we are out here.  And, it is cathartic to be able to express yourself among people who understanddawnc

Please feel free to start a new thread on a specific subject that you would like to discuss, ie: medications, depression, a specific disease...

Thank you for your contributions, and I will try to bring you helpful links and articles.  I am going to be absent for a few weeksdawnc, but I will be thinking about the group while I'm gone.

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 February 06, 2006 6:14 AM

NEWER... MAYBE BETTER: BIOLOGICS

One of the biggest problems with many drugs is that they are
nonspecific. While they are "fixing" what ails you, they also are
affecting other parts of your body, often with unpleasant or
dangerous side effects. Enter biological response modifiers
(biologics for short), a potentially exciting new class of drugs
derived from living organisms that are designed to target specific
components of the immune system -- rather than the immune system
as a whole -- with the goal of controlling serious disease while
minimizing side effects. These drugs have been in use for some time
in the treatment of rheumatoid arthritis (RA) -- infliximab
(Remicade) is a name that should sound familiar -- and are
starting to make their way into other areas.

The good news: Drug companies are opening their minds to the dangers
of side effects. The bad news -- biologics are not quite there just
yet, because they have been associated with adverse reactions
including life-threatening infections and malignancies.

HOW THEY WORK

An exciting difference in biologic drugs versus most current
medications is that they offer more than symptomatic relief --
they focus on underlying issues that cause symptoms. Noted Texas
rheumatologist and author of Arthritis Without Pain (Sarah Allison),
Scott J. Zashin, MD, has been using biologics for some time in the
treatment of rheumatoid arthritis. He told me that three biologic
agents -- etanercept (Enbrel), adalimumab (Humira) and infliximab
(Remicade) are often effective in controlling RA in people who do not
respond to conventional medications known as disease-modifying
drugs (DMARDs).

http://www.amazon.com/exec/obidos/ASIN/0975406000/blpnet

Enbrel, Humira and Remicade work by blocking a substance manufactured
by the immune system called tumor necrosis factor (TNF). People with
RA and related inflammatory diseases -- including juvenile rheumatoid
arthritis, ankylosing spondylitis, psoriatic arthritis and psoriasis
-- have too much TNF in their bodies. This overwhelms the immune
system's ability to control inflammation, resulting in painful,
swollen joints or, in the case of psoriasis, redness, itching and
thick, silvery scales on the skin. Note: These medications are
approved for RA and psoriatic arthritis... Humira and Remicade are
also approved for ankylosing spondylitis... Remicade is approved for
Crohn's disease and ulcerative colitis, etc. They are also used on
an off-label basis for those inflammatory problems for which they
are not approved.

TNF-blocking biologics are essentially man-made versions of proteins
that the body produces naturally whose job it is to bind to and
deactivate TNF molecules before they can do their damage.
This interrupts the chain of events that leads to some forms of
inflammation, and much of its resulting pain and damage.

PROS AND CONS OF BIOLOGICS FOR RA

According to Dr. Zashin, each of the three primary biologic drugs
for RA (which are essentially blocking agents) have their pluses and
minuses. A particular minus is that they can weaken the
immune system...

* Enbrel. Given by self-injection under the skin once or twice a
week, Enbrel can provide rapid relief, often with the first shot. Dr.
Zashin reports that relief tends to come faster with Enbrel than with
Humira. With both Enbrel and Humira, injection site reactions that
include pain, redness and infections are a concern, and, as mentioned
above, all three biologics can weaken the immune system. Alert your
physician at the first sign of any infection.

* Humira. This drug is also administered by injection, but a
significant advantage is that shots are required on average only
twice a month. In his practice, Dr. Zashin sees fewer upper
respiratory infections caused primarily by the suppression of the
immune system with Humira than with Enbrel. However, he adds that
this is only his own experience, and research has yet to corroborate
this effect.

* Remicade. Dr. Zashin recommends Remicade only when Enbrel and
Humira prove ineffective. This drug must be given intravenously and
administration takes about two hours. It is usually given three times
during the first three weeks of treatment, and every eight weeks
thereafter. Dr. Zashin cautions that with IV administration, there is
a small but real risk of infusion reactions. Remicade is also
considerably more expensive than the other biologics and brings with
it similarly dangerous side effects. Remicade also has been approved
for use in the treatment of Crohn's disease and ulcerative colitis.

A fourth biologic, anakinra (Kineret), is also available, but in
Dr. Zashin's opinion, it is less effective than the others. Newly
approved abatacept (Orencia) is a second-generation biologic that
works differently from the TNF-blockers because it targets a
different element of the immune system. Only time will tell whether
this new medication is "safe and effective." Keep in mind that "safe
and effective" is a category description that the FDA uses,
not a guarantee that the drugs will be safe for all -- or safe in
the long term.

 [ send green star]
 
con't February 06, 2006 6:15 AM

A RISK FOR SERIOUS SIDE EFFECTS

As with any drugs that affect the immune system, Dr. Zashin
warns that biologics have a serious downside. Risks that he
mentions include...

* Serious infections, including tuberculosis and sepsis

* Nervous system diseases, such as multiple sclerosis

* Blood problems

* Heart problems (for example, congestive heart failure)

* Allergic reactions

* Malignancies, including lymphoma

Also, Dr. Zashin warns that the long-term effects of these drugs are
simply not known. If you are taking a biologic, you must be very
careful to meet regularly with your doctor to monitor your progress
and any side effects.

TREATMENT MUST BE CAREFULLY INDIVIDUALIZED

RA can be a devastating, crippling disease, and some sufferers look
on biologic medications as lifesavers. On the other hand, not
everyone with RA needs to take biologics, warns Dr. Zashin. These are
serious drugs that should be used only when they are absolutely
necessary, and some people may be able to get by with nonsteroidal
anti-inflammatory drugs (NSAIDs), such as ibuprofen, and more natural
treatments. Given that NSAIDs are also associated with bleeding
gastritis, liver and kidney complications, Daily Health News
contributing editor Andrew L. Rubman, ND, encourages individuals to
go natural first and save the drugs as a path of final resort.

The most important thing is to carefully individualize treatment,
emphasizes Dr. Zashin. While one person with RA needs only NSAIDs,
another might experience such rapidly developing damage that early
and aggressive intervention with biologic medications is warranted.

FUTURE POTENTIAL FOR BIOLOGIC DRUGS

While biologic drugs are still used primarily for RA, they are also
prescribed increasingly for other inflammatory diseases such as
psoriasis, ulcerative colitis, Crohn's disease and psoriatic
arthritis. As time goes on, he anticipates that more new biologic
drugs will come on the market, and they may gradually become less
expensive and able to be taken orally. Hopefully, they will be safer,
as well.

-----------------------------------------------------------------

Sources:

Newer... Maybe Better: Biologics

* Scott J. Zashin, MD, rheumatologist with practices in Dallas and
Plano, Texas. Dr. Zashin is author of Arthritis Without Pain (Sally
Allison).

http://www.amazon.com/exec/obidos/ASIN/0975406000/blpnet

 [ send green star]
 
Thanks! September 22, 2006 4:39 AM

Thanks for this group, and this thread.  As I sit here reading, looking for help, I'm freaking-out, wondering how I'm going to make it through the day, again.
I'm 44, I have a beautiful healthy 13 m/o baby daughter, who literally keeps me going, whether I'm able to, or want to, every day.  I was diagnosed w/ a few psych. disorders 10 years ago, became insulin dependent diabetic 7 years ago, and have been suffering with severe neuropatic pain in my legs.  (I believe Zyprexa IS to blame for the diabetes.) Also, have degenerative disc disease.  Pain is very difficult to describe to doctors who've never experienced any more than an ingrown toenail.  Hopefully one day, soon, I'll find a pain management doctor who will understand, and adequately treat the level of pain I deal with every day.  It is not just me who endures, it is my family.  They see what I live, they feel my pain, and some days I'm just not such a plesant person to be around.  It's hard to be nice when your eyes are rolling in the back of your head, and you cannot speak, or function.  I just want to be able to enjoy the beautiful gift, my baby, everyday.

 Looking forward to reading and chatting more. 

Peace, and to All--Be Well
Victoria


 [ send green star]  [ accepted]
 
 September 22, 2006 1:30 PM

Welcome Victoria, and thank you for your contribution.  I am in Tacoma, Washington now.  I moved here from Syracuse, NY in March.  It has been a very busy time for me, and my experience with the medical profession here has been pitiful. 

They like to label people, and buttonhole them as drug addicts if they use pain medications.  I came here with Rx's written by my dr's in NY and they just threw them out the window and told me that they wanted me on methadone.

I am lucky to be able to get the meds that I need to keep my headaches at bay.  So, I have resorted to a medical marijuana prescription.  I have nothing to treat the pain in my back and leg, or the horrendous headaches that I get.  They are really into a "blame the patient" system of medicine.  If you have pain, it is your own fault, and you must deal with it on your own.

I don't understand why they wonder at all of the people standing in line at needle exchange trailers, or why the marijuana business is booming out here.  People have to seek relief somewhere.  And, the people who are drug tested are all heavyduty drunks... I mean the white lightening kind.  Geeze, it just boggles my mind that educated people think that they are doing something constructive by being politically polarized.  THEY are hurting their patients.

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anonymous you ARE ALL OF OURS ANGEL! September 24, 2006 2:39 PM

andrew_2.jpgandrew_2.jpgThankYou

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Thanks! September 25, 2006 5:12 AM

Thanks, Liberal, and Dawn C.

I greatly appreciate the friendship, compassion, understanding and common link, we all share here.  It is very comforting, and you are all great people.

Dawn, when I moved here from Gainesville, Fl. I was greated with, not only great contempt but, unyielding suspision from my new doctor.  Labled, a 'junkie'.  What a hoot!  Not funny.  It has taken almost three years, a nerve mapping, and a very close brush with death for him to understand, accept, and somewhat treat my conditions.

I don't even know where to begin, in discussing the ineptitude of the entire medical "Industry".  I only wish that the doctors who under-treat us could experience life in our bodies for just 10 minutes.  Or, for them to watch one of their own loved ones writhe in pain for a day, much less a life time, to see how long it would take them to adequately treat it.

Peace, Love & Blessings~
Victoria
 [ send green star]  [ accepted]
 
 November 16, 2006 9:47 PM

I joined this group awhile ago, but I think I've been avoiding it; in fact I'm sure I have. I live w/chronic pain daily and have been since 1990. I had my first major surgery for scoliosis correction in 94 T6 to S1 and then in 99 I had revision surgery for a break between L4/L5. I have a # of conditions related to after surgery effects including degenerative spine (particularly S1), a blown disc at T7? above the fusion, a shoulder w/tendinitis, bursitis, 2 torn ligaments, arthritis in my knees (actually all over). I rarely talk about this in any real detail, but I'm having to learn to not be so proud - this is part of my life journey - I have related stomach problems because of the pain pills I've taken for so many yrs. I've had PT and for years I managed to not take narcotics and used everything including hypnotherapy and biofeedback to avoid the harder drugs. For muscle/nerve pain after surgery which never went away I took neurotin (no longer), and I took Oxycontin (crazy drs wanted to put me directly on a morphine pump from only taking a muscle relaxant (not that I wasn't in a great deal of pain - I was trying to brave it out - be strong like my dad - all that) but I refused - I told them I wanted botox injections which worked pretty well - now I have nerve block injections to try to avoid additional surgery on the S1 because it will be both anterior/posterior. I feel fortunate that I can walk having had to re-learn how to walk after the first surgery - no rehab/no PT. I've had my battles w/drs who of course didn't understand the pain at all - didn't explain the consequences of major surgery - didn't discuss options - told me my spine would keep bending, period. Have the surgery or bend and end up in a wheelchair. End up in one anyway, but at least delay the process. I stopped the denial and avoidance for the most part and decided to live WITH my pain - not a friend but at least someone I know very well - and am very aware of -I built a tool box of techniques and methods to use and sometimes I have to re-adjust. I quit the oxycontin because it really didn't work for me and I had no intention of going up, up, up and becoming more of a zombie. I use Lidocaine patches which are wonderful. Between those, the injections, an anti-depressant to take the edge off depression, keeping my mind, body and spirit balanced - making connections - support is key...I have a pain mgmt dr. I have a decent relationship with - I am very direct w/him. When his staff recently accused me of Medicare fraud because I asked for PT w/o having to keep asking for it over and over (I qualify believe me) it was a matter of a code - they wouldn't change the code as asked by the PT provider, instead they accused us both of fraud - I was so angry I went directly to the dr who knew nothing about it. He fired his staff - I asked him if I wanted to commit fraud would I be looking you in the eye? I don't care what you do in re: to the code. But I do care that you respect me as an honest person. Now, I call him directly - and don't have to deal w/staff at all. I've learned to be assertive - not rude, not aggressive, but no victim playing here...I have been treated like a victim by staff in doctor's offices before - the second surgery office manager was that way - I didn't understand that at all. She would call and harass me about insurance payments when I was trying to recoup from the surgery. Oh, I know we all have these kinds of horror stories. Over the years, I've developed resilience - I learned to stay active as I can - do what I can w/what I've got - like you do here - I started a group called the Fiesties for people w/Harrington rods w/a friend. It's still in operation. Now, I'm working on a documentary (on a different subject). I had to stop working early - or I chose to - I should say - I realized I couldn't do it anymore w/the amount of pain - it was killing me. The job I was in was highly stressful - meeting after meeting....so I retired for medical reasons, and if I set my own hours now - I'm on Social Security Disability so I can help answer ?s about that if anyone has them. I still do social work because it's a natural part of who I am..I love people and now on Care2 I have the opportunity to help animals and the environment, dabble in politics and other issues I care deeply about. And I'm so glad there is a group like this. I'm ready to not be alone w/chronic pain anymore. I rarely talk about it because it feels "self  centered" somehow. My family is very good to me. My husband is a Vietnam vet who is now experiencing health problems from Agent Orange, asbestos and Red Lead - he has been a sweetheart after each surgery. My friends know as well as friends can know and are thoughtful - as they are getting older, too, they have more understanding, I think, but I don't wish it on them. I've talked too much, but just to say thank you for listening and for being here. I had no idea at age 13 when I was told I had a mild curvature (which didn't start "bending" until I was in my 40's and which no one can "see" even today) what an impact it would have on my health and my life. Perspective, however, makes a huge difference. I figure this is part of what I'm supposed to learn...now if I can figure out what all I'm learning.....

bsstarangelhugs.gif  

 [ send green star]  [ accepted]
 
 November 16, 2006 9:50 PM

I joined this group awhile ago, but I think I've been avoiding it; in fact I'm sure I have. I live w/chronic pain daily and have been since 1990. I had my first major surgery for scoliosis correction in 94 T6 to S1 and then in 99 I had revision surgery for a break between L4/L5. I have a # of conditions related to after surgery effects including degenerative spine (particularly S1), a blown disc at T7? above the fusion, a shoulder w/tendinitis, bursitis, 2 torn ligaments, arthritis in my knees (actually all over). I rarely talk about this in any real detail, but I'm having to learn to not be so proud - this is part of my life journey - I have related stomach problems because of the pain pills I've taken for so many yrs. I've had PT and for years I managed to not take narcotics and used everything including hypnotherapy and biofeedback to avoid the harder drugs. For muscle/nerve pain after surgery which never went away I took neurotin (no longer), and I took Oxycontin (crazy drs wanted to put me directly on a morphine pump from only taking a muscle relaxant (not that I wasn't in a great deal of pain - I was trying to brave it out - be strong like my dad - all that) but I refused - I told them I wanted botox injections which worked pretty well - now I have nerve block injections to try to avoid additional surgery on the S1 because it will be both anterior/posterior. I feel fortunate that I can walk having had to re-learn how to walk after the first surgery - no rehab/no PT. I've had my battles w/drs who of course didn't understand the pain at all - didn't explain the consequences of major surgery - didn't discuss options - told me my spine would keep bending, period. Have the surgery or bend and end up in a wheelchair. End up in one anyway, but at least delay the process. I stopped the denial and avoidance for the most part and decided to live WITH my pain - not a friend but at least someone I know very well - and am very aware of -I built a tool box of techniques and methods to use and sometimes I have to re-adjust. I quit the oxycontin because it really didn't work for me and I had no intention of going up, up, up and becoming more of a zombie. I use Lidocaine patches which are wonderful. Between those, the injections, an anti-depressant to take the edge off depression, keeping my mind, body and spirit balanced - making connections - support is key...I have a pain mgmt dr. I have a decent relationship with - I am very direct w/him. When his staff recently accused me of Medicare fraud because I asked for PT w/o having to keep asking for it over and over (I qualify believe me) it was a matter of a code - they wouldn't change the code as asked by the PT provider, instead they accused us both of fraud - I was so angry I went directly to the dr who knew nothing about it. He fired his staff - I asked him if I wanted to commit fraud would I be looking you in the eye? I don't care what you do in re: to the code. But I do care that you respect me as an honest person. Now, I call him directly - and don't have to deal w/staff at all. I've learned to be assertive - not rude, not aggressive, but no victim playing here...I have been treated like a victim by staff in doctor's offices before - the second surgery office manager was that way - I didn't understand that at all. She would call and harass me about insurance payments when I was trying to recoup from the surgery. Oh, I know we all have these kinds of horror stories. Over the years, I've developed resilience - I learned to stay active as I can - do what I can w/what I've got - like you do here - I started a group called the Fiesties for people w/Harrington rods w/a friend. It's still in operation. Now, I'm working on a documentary (on a different subject). I had to stop working early - or I chose to - I should say - I realized I couldn't do it anymore w/the amount of pain - it was killing me. The job I was in was highly stressful - meeting after meeting....so I retired for medical reasons, and if I set my own hours now - I'm on Social Security Disability so I can help answer ?s about that if anyone has them. I still do social work because it's a natural part of who I am..I love people and now on Care2 I have the opportunity to help animals and the environment, dabble in politics and other issues I care deeply about. And I'm so glad there is a group like this. I'm ready to not be alone w/chronic pain anymore. I rarely talk about it because it feels "self  centered" somehow. My family is very good to me. My husband is a Vietnam vet who is now experiencing health problems from Agent Orange, asbestos and Red Lead - he has been a sweetheart after each surgery. My friends know as well as friends can know and are thoughtful - as they are getting older, too, they have more understanding, I think, but I don't wish it on them. I've talked too much, but just to say thank you for listening and for being here. I had no idea at age 13 when I was told I had a mild curvature (which didn't start "bending" until I was in my 40's and which no one can "see" even today) what an impact it would have on my health and my life. Perspective, however, makes a huge difference. I figure this is part of what I'm supposed to learn...now if I can figure out what all I'm learning.....

bsstarangelhugs.gif  

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