Writing a comment to FDA about proposed REMS

2010-01-19 by

I received a response from a post I submitted on Chronic Pain Connection:

FDA REMS Proposal
Karen Lee Richards
Monday, January 18, 2010 at 09:55 PM

I would also encourage you and everyone concerned to write to the FDA.  They are taking comments from the public regarding these proposed REMS until Oct. 10, 2010.  Here’s a link to the FDA announcement.  Toward the bottom of the page of the FDA announcement is a link to their form if you’d like to submit it online and their address if you’d prefer to mail it.

Risk Evaluation and Mitigation Strategies for Certain Opioid Drugs

This will take you to another page where it asks you to choose which document you want to reply to.

Choose FDA and choose public announcements.  There will be several items to choose from.  Select  Risk Evaluation and Mitigation Stategies for Certain Opioid Drugs and then you will be taken to a page where you can place a comment.

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Posted in Chronic Pain, consumer driven health care movemnet, FDA, governmental regulations, Health care issues, Medical System, Pain Management, Physicians, Politics, REMS, WarOnDrugs | 1 Comment »

If travel worked like health care

2010-01-19 by

I invite you to watch this video on the page : If Travel Worked Like Health Care.

It might help you realize what a tangled web the government and insurance companies conceive when they practice to deceive.

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Posted in governmental regulations, Health care issues, Medical System | 2 Comments »

Article on FDA REMS

2010-01-18 by

I just read an article titled ” When Elephants Dance , Ants take a Pounding”.

“On December 4, 2009, the U.S. Food and Drug Administration (FDA) called upon pharmaceutical company representatives to report on their progress in developing a REMS (Risk Evaluation and Mitigation Strategy) for extended-release or long-acting opioid analgesic products containing oxycodone, morphine, methadone, and other agents. Concerned about what are perceived as high rates of misuse, abuse, addiction, and overdose with these powerful pain relievers, this is the first time the FDA has demanded a REMS program for an entire class of drugs.”

Many of the drug companies manufacturing the above mentioned narcotics have formed a  Industry Working Group (IWG) to try to deal with the problems of drug abuse  while still trying to assure that people such as chronic pain sufferers will still be able to get the medication they need to function in their every day lives.

The FDA gave these IWG’s little information to form a base to construct a plan even though the IWG members have spent many hours putting together a plan. You can read in the article about the proposed phased in plan

As the article points out, the problems are not with the people who take the prescribed drug but it is a community problem.  No matter what the FDA regulates there is still going to be abuse of “prescription” drugs.  The FDA thinks by keeping doctors from prescribing narcotics with abuse potential that it will stop people who abuse prescription drugs.

Some of these drugs may still be available on the street because of prescription narcotics prescribed overseas.

It is obvious to any thinking person, that people who abuse drugs if they do not have prescription narcotics available will obtain drugs from the “street.”

Some FDA officials have admitted that it is their goal to get doctors to stop prescribing these narcotics period.  They obviously do not care about the thousands of people like me who need narcotics to make their pain manageable so they can live day to day.

These officials have also admitted that it is their plan to put all of us who are prescribed these narcotics into a register and ration the amount of narcotics we receive.

Why, why, why do they want to do this? They have to know that we who responsiblity take narcotics under a doctor’s supervision are not drug abusers.  Or do they?  Have they bought in to the totemism of the “evil’ narcotic so far  that they believe even legitimate narcotic use should be stamped out?

Is it to prove that they have done “something” to address the war on drugs so their funding will be continued?

I have seen so much violation of constitutional individual rights in the past few years, I’m starting to not recognize this country as America, Land of the Free.

What can we do? We can do what our founding fathers afforded us the right to do.  We need to spread the word about what is going on as much as possible and join the consumer movement for health care reform.

We can write to all our congressmen and women and tell them our stories.  Also we can vote people out of office who will not stand up for our constitutional rights.

Even though I have a terminal illness, I for one will not roll over and give up.  Fortunately, there are physician practices and other foundations with strong political backing who are prepared to fight these proposed changes.

I’ve already read so many sad stories about people being undermedicated due to physician fears of governmental retribution.  I understand their fears and concerns, but to stop giving people medication that they need to survive before any action has been taken against their practice is inexcusable.

The DEA did raid doctor’s offices but the numbers were few and most cases were settled out of court.  It was enough to send many doctors rushing away like herd animals.  They should look at what actually going on now, not what they fear may happen.  While they can help people who are in horrible pain they should remember their oath and not turn people away who are in agonizing pain.

I believe physicians should stand by their patients and face what is coming together.  I still see humanity in some physician’s practices and I am old enough to remember when caring for the patient was the primary focus of the physician.

We need strong minded compassionate people in the medical field.  This is another reason why I believe that the best model for health care reform in a consumer based movement.  We have a right to good quality of care.

I let myself for a minute imagine the post apocalyptic world for chronic pain patients that would exist if the FDA is allowed to intact their plans.

Thousands of  people who suffer from chronic pain and chronic illnesses will be having to make life and death decisions.  Such actions would force those of us who chose to live and carry on with their responsibilities to seek our narcotics from an illegal market who would be more than willing to welcome us into its clutches.

Those without money to pay for these narcotics might be forced to do things that actual junkies do not because we wanted to get high but to survive.

Is that what the government wants, to send thousands more consumers into the illegal drug market?

Hopefully, it won’t come to this.  As I said, I do see promising signs that physicians and organizations are joining force to keep this legislation from being acted upon.

If you want to read more information on guidelines that the FDA is using to define chronic pain and treatment of chronic pain with narcotics see  The National Clearinghouse Guidelines, Managing chronic non-terminal pain including prescribing controlled substances.

I also want to remind readers that I do have another blog that I am starting.  It is called The Professional Patient.

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Posted in Chronic Pain, consumer driven health care movemnet, Dying, FDA, governmental regulations, Health care issues, Medical System, Pain Management, pain management specialist, Physicians, Politics, REMS, Treatment, WarOnDrugs | 2 Comments »

The Patients’ right to their medical records

2010-01-16 by

I’ve clearly stated my views previously that I believe that patients should have full access to their medical records.  Yesterday I read an interesting article, Patients Demand, “Give us our damned data.”

The first story in the article talks about a woman whose husband was transferred from one hospital to the other.  She had to run back to get his medical records from the first hospital so that he could get adequate pain relief.  The second hospital refused to give him pain medicine until they received his records from the first hospital.  Most people would assume that the staff from the first hospital could fax the records over to the other hospital but that isn’t the way things work.  The system for retrieval of medical records is broken and it long overdue to be fixed.

I have said before that I have a degree in Health Information Management.  Once upon a time having been a supervisor and then a department director of a medical record department, I saw how hard it was to keep track of medical records.  The strangest place I ever heard where some lost records in Texas were found was in the trunk of a medical resident’s care in Florida.

As described in the article there are other reasons for patients not being given their medical records.  When I left the field of information management, only two hospitals in the state had electronic medical records.

It does not look like things have gotten much better.  In many hospitals,  only parts of the record are converted into an electronic medium.  During my stays in the hospital as a patient, I saw nurses typing and clicking boxes online, then writing the same information in two different places.

I was in the hospital for a month with a deep venous thrombosis and by the end of my stay, despite their electronic checklists, they still didn’t have my medication correctly scheduled.

What happens when you are discharged from the hospital or you are seeing a physician at their office and you ask to receive a copy of your medical records?

As Ms. Cohen states in her article, there are federal laws that guarantee patients the right to their medical records.  This does not mean that patients will receive complete copies of their medical records in a timely fashion.

If you try to obtain your medical records of a recent hospital admission, you will be directed to the medical records department.  But as it is explained in the article, a clerk might tell you that you can’t have your records because they are not complete. They have usually 30 days to provide you with the medical record.  As the article says, if you need the records more quickly because you or your loved ones are in another hospital, have the attending physician request the records.  Hospital staff usually complies to requests when a patient has been readmitted to a hospital.  But, unfortunately, sometimes hospitals do not get the records in a timely fashion to the other facility.

I’ve been behind the scenes.  They aren’t lying when they say the record is not completed.  Many records come down from the floor without signed orders, without discharge summaries because the doctor has failed to dictate them yet or perhaps the record is still in processing and it hasn’t been put in proper order and not all reports have been filed into the record.  But after 30 days, it is reasonable to expect that the records should be complete.

Often the clerk will suggest if the record is incomplete that if you fill out a request for the medical records and write down the doctor they need to be sent to, they will send a copy of the records they have to the doctor who needs to see them.

If the clerk is able to make a copy of your medical record then you will be charged a fee.  After all it cost money to make copies (not as much as they charge but of course you have to figure in employee time, etc.)

When you try to obtain copies of medical records, you soon get the feeling that perhaps they don’t want you to have them.  That feeling you have is correct.  Hospitals and doctors always point the finger of privacy regarding medical records.  Afterall, they are trying to protect your records from falling into the wrong hands.  But, these are your hands you say.  What better hands to hold my record than my own? True, but doctors and hospitals really would you rather not have the information.  There may be something in the record that you may “misunderstand” to be a medical error.

Also if your record has been flagged because it is under review for anything such as utilization of services, quality of care or especially any possible litigation, you will be told that your record is not available to be copied at the time you request it.

What can you do?  As mentioned in the article there are many complaints to the Department of Health and Human Services.  What can they do? Not much.

The even more difficult records that you may need to obtain are the records from your physician’s office.  It is standard practice for office staff not to allow you to have copies of your records.  They will tell you it is their policy to only forward records to another doctor.

What you must do is find out the laws in your state regarding your rights to your medical record.  The laws vary from state to state and as  Ms. Cohen points out, some states grant you less access to your medical records than federal laws allow.

Once you know what rights you have to your record if the doctor’s office or hospital refuses to give you a copy of your record, then it would be a good idea to print out the law of your state regarding patient’s rights to their medical records.  You can usually find this information by googling laws in your state.  If you can’t find it, there should be a number that you can call listed on a state’s web page or call your local library.

After you have printed out the information, then “politely” demand the right to your records. As Ms. Cohen says, you may have to get “mean.”

As I stated above, your record may be flagged because it is to be reviewed by a committee for possible misuntilitization of services or a medical staff error involving your care.

I was admitted to the ER and overdosed with anti-emetics which caused me to come back to the hospital having major spasms and tremors.  We made a complaint to the hospital and I was not initially given access to my medical records until after we went to a scheduled meeting with an administrator in which he graciously apologized.

You may not even know a mistake has been made.  Hospitals are required to perform reviews on some  records in which they find “medical mistakes” even if there was no adverse outcome to the patient.   So you may not even know there was a mistake.  If you receive a vague answer as to why you cannot receive your regards according to federal and state laws then I suggest you keep going up the chain of command until you find someone who is willing to discuss why your record is not available.  If you have to make an appointment with an administrator so be it.  Also, in the case, the squeaky wheel theory does apply.

As for physician’s records, you may have done everything you possible can do to get your entire medical record and you may only end up getting a few pages of records.  This is because the doctor doesn’t really want to give you anything and you can’t prove what was in the record and what was not.  The main thing I am interested in when I obtain physician’s records is a summary of the visits and copies of all tests.

I thought when I had to leave the health care profession 13 years ago that by now physician’s offices and hospitals would surely have complete electronic medical records. I read the other day on average many states only have 13% of their medical records converted to entire medical records.

There are many reasons for this such as lack of doctor cooperation, hospitals having many different computers that can’t communicate with each other etc.  Physicians with office practices complain that it is too expensive to convert their medical records to electronic form but they really haven’t looked at all the possibilities.

There have been models of patient centered care in which the patient owns his or her complete electronic medical record and is able to carry it with them on a thumb drive.  The patient is in charge of their own records and can give information to who they want to give information to when they want to.  The results are promising.  Patients feel much more empowered as a team player in their medical care.

The government says that all medical records will have to be converted to an electronic form by 2014.  I hope that before then this growing grass roots movement of consumer based health care will direct that electronic medical records are a necessity and that everyone should have access to their medical record at all times.

Data that will be able to be generated by web based software from electronic medical records will help patients and doctors to be able to come to the right diagnosis quicker and provide information for the best paths for treatment.  This information will also show patterns in the way hospitals and doctors practice medicine and then people will be able to truly find the right doctor to provide the best diagnosis and treatment for their illness.

I suggest you watch this video  on this page: The Quantified Patient. One man talks about his journey obtaining medical information and treatment for his kidney cancer.

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Posted in consumer driven health care movemnet, errors in medical treatment, governmental regulations, Health care issues, Medical System, Physicians, Politics | 3 Comments »

Fibromyalgia, latest news

2010-01-05 by

I don’t have Fibromyalgia  but I do have FM symptoms.  I just read the following articles and I thought they might be helpful to some of you:

See the following information from the American Pain Foundation about a webinar on  Fibro Treatment and Management.

Also see, Fibromyalgia:  Five things you need to know and Spotlight on Fibromyalgia.

Take care,

Soulfulsilkee

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Posted in Chronic Pain, Fibromyalgia, Treatment | 1 Comment »

American Values and Health Care Reform

2010-01-05 by

I just read an article about American Values and Health Care Reform and it inspired me to express my views about topics mentioned in this article.

The article is written by Thomas H. Murray, Ph.D.

He says “Most thoughtful Americans would have something meaningful to say about the values we should choose for the foundation of our system of health care. And by focusing on these fundamental considerations, perhaps we can deepen and broaden the discussion of values and public policy.”

First he discusses “liberty,” which I agree should be a value and a right we have regarding health care reform.  He mentions that this  includes” the freedom to choose a physician and the freedom for physicians to choose their practice setting and patients.”  I would go further to say that physicians should have the freedom to practice medicine in the best way possible to assure quality of care.  So many physicians are constrained now by insurance companies and governmental regulations that affect the way they practice medicine.

Examples of this are physicians who feel  like they have to practice defensive medicine because they are worried about liability.  This has lead to some group physicians practices looking at each patient as whether they might be a liability to their practice.  I experienced the outcome of this practice myself.  I found a young female physician who promised she would stick by me as long as it took to find out what was wrong with me.

I came to a follow-up appointment to find that she had already discharged me from her care.  She told me that she did not know what I was doing there because she had made it clear to me on the last visit that I should go to Johns Hopkins and she was discharging me from care.  I was very ill and I burst into tears and told her I knew that had not happened.  She confided in me that she had presented my case in a weekly case discussion, hoping to get feedback from other more experienced doctors.  She was told to “get rid of me,” and that I was too much of a liability to the practice.

Others such as doctors who treat people with chronic pain are wrapped in bureaucratic tape due to previous actions by the DEA and REM’s instituted by the FDA for narcotics that take away the freedom to prescribe medications for the maximum benefit of the patient.  Any chronic pain patient can tell you about the infamous “pain contract” with doctors and the hoops we are forced to jump through to obtain our medicine.

Dr. Murray discusses, ” Under our current system, a young entrepreneur with a brilliant idea for a new business, a creative vision that can create jobs and wealth, can’t necessarily follow that vision: if this person has a job at a large firm that provides good health insurance and has a child or a spouse with a chronic illness, the aspiring entrepreneur’s freedom to pursue his or her dream is severely limited by the “job lock” imposed by our current patchwork of health insurance.”

I’ve had personal experience regarding this situation when I was younger.  My former husband was self-employed.  I  had a few opportunities to get in on the ground floor of a start up coding consultant companies that began to flourish in the late 80’s, but I couldn’t even consider it because I had pre-existing health conditions that would have made it impossible for us to buy individual health insurance at a reasonable price.

Mycurrent  husband and I have constantly had to worry about insurance coverage since I have become ill. Due to the contract nature of his work at times, the actual company he has worked for sometimes hasn’t provided insurance. There was a stretch of time in which we were paying over $2000 dollars a month just for prescriptions.

Despite the fact that I have a terminal illness, I still haven’t been able to qualify for disability.  I’m about to talk to another attorney  about the possibility but due to SSI’s policy of giving strong consideration for disability regarding evidence of disability in my medical records for the first three years after I became unemployed, I have not been able to qualify because  I was first disabled due to a complex regional pain syndrome and we saw many physicians until 2003 when it was fianlly diagnosed.  This is an example of governmental involvement in health care benefits.

Dr. Murray also discusses values such as  justice and fairness, responsibility, medical progress, privacy, and physician integrity.    Should every American be required to participate in health insurance?  I have a problem when lower middle class and middle class people are going to be forced to buy health care insurance when they are already being taxed for Medicare and Medicaid.  Where is the extra money for premiums supposed to come from?  Many families have at least one spouse who is out of work.  The poverty line is around $11,000.  There is no significant special funded provided in this bill for middle class families.

Dr. Murray writes, “What are our obligations to ensure that the resources devoted to health care will be used wisely? Will a universal health care system provide for appropriate utilization of services while ensuring quality of care of all patients.?”  If you look at most universal health care plans adopted by other countries, quality of care has suffered dramatically.  Patients have to wait months to see specialists or to have surgery.

Two years ago, I had a large deep venous thrombosis and was in the hospital for a month.  I read posts by people in the U.K.  and other countries that were still having complications from their DVT after two years.  Some of them were still waiting to have surgery.

Dr. Murray discusses The Emergency Medical Treatment Act  which requires that emergency rooms provide treatment without regard to ability to pay. Have we done enough with our health care system to provide for human decency when as Dr. Murray states, ” According to the Institute of Medicine,20,000 people a year die for want of health insurance. Thus, one of the key challenges of health care reform is to make certain that appropriate care is available to every member of our community when needed.”

What is the definition of appropriate care?  With the current health care system many people do not receive appropriate care.  The problem with Universal Health Care is that “appropriate care” only means that everyone has access to care.  This country already has a shortage of doctors and with the initiation of Universal Health Care many doctors will abandon ship.  This will leave physician assistants and nurse practitioners to provide for much of primary health care given to patients.  They will be overworked  and underpaid.  There will also be a shortage of people who want to work in a system where there are long lines of sick patients to take care of and low wages for their efforts.

Also, specialists will be more scarce and to try to save money, the healthcare system will prevent patients from seeing specialists as much as possible.

If you don’t believe me, read stories of chronically ill patients who have tried to receive good health care through HMO’s.  If you are a healthy person, HMO’s work wonderfully.  You only need to see a primary care physician and there is little out of cost expense for preventative medicine.  Chronically ill patients and patients who are seriously ill cost the system more money.

I use to review records for quality of care in HMO’s and I saw many cases of primary care physicians or usually a physician assistant or nurse practitioner putting off appointments for patients to get in to see a specialist.  Also, abnormal test results were often overlooked and not discovered until two or three visits later.  You will see with any program of universal health care that health care must be rationed so expense procedures and tests will often be delayed.

Dr Murray states, “But if everyone is to receive care when it is needed, fairness and responsibility also require that everyone participate in financing it. In its 1993 report, “Genetic Information and Health Insurance,”4 a task force of the Human Genome Project’s Ethical, Legal, and Social Issues Working Group proposed the concept of universal participation. Insurers who recoiled at the idea of universal access accepted universal participation as a legitimate goal. To them, universal access meant that healthy people could skate along without paying any premiums — until they got sick, at which point insurers would have a legal obligation to enroll them and pay their medical bills.”

Everyone can see the obvious problems that arise with that system.  Dr. Murray continues, ” Only people who expect to file insurance claims would voluntarily buy policies. A policy of universal participation eliminates adverse selection. And “universal participation” is a more accurate and inclusive term than “universal mandate,” which addresses only the individual’s obligation, not the national commitment to assuring that care will be available when and where it is needed.”

Len Nichols, director of the Health Policy Program at the New America Foundation, recently invoked the Old Testament in discussing stewardship. ” When food is more than sufficient to feed all, allowing some people to starve is indecent and represents a failure to live up to universal moral duties. ” Dr. Murray writes “To Nichols, the principle concerning the availability of food in Leviticus should be applied to health care today: just as the gleaners of Leviticus should not starve, so people in need of basic, effective health care should not be allowed to suffer and die. Stewardship requires us to be mindful of the basic needs of others and of the power and responsibility we have to use the resources in our control to meet those needs.”

He says “Stewardship therefore requires that we pay scrupulous attention to quality, efficiency, and cost-effectiveness — or value, to use the market’s sense of the term. The evidence that we do not get good value for our money — that our health outcomes fall far short of those in many other countries, that regional variations in expenses do not track variations in quality, that our hospitals too often fail to ensure consistent adherence to practices known to enhance quality (such as hand washing) — is overwhelming. Everyone entrusted with the leadership of our health care institutions and with the allocation of our health care dollars has an obligation to be a thoughtful steward of those scarce resources.”

Will the government be able to initiate such programs to ensure quality of care? As I have stated before, there was  a program the government initiated through the Health Care Financing Administration that contracted a company that I worked for to do “peer review” screening of Medicare, Medicaid patients  by reviewing their medical records for proper utilization of services, proper coding of diagnoses to insure accurate billing and most importantly screening for quality of care issues.

I pre-screened these records for physicians and then the physician would review the records with potential problems.  In many ways the program fell short. Within the 10 year period that records were reviewed, fewer and fewer records were selected due to budget constraints and pressure from lobbyists.  I believe the fact that the program  existed did improve over all utilization of services and quality of care in hospitals.  Unfortunately, the government abandoned the program.

Also, very few physicians or hospitals were actual sanctioned at the state level even though some major patterns of poor quality of care were found.  Also, results of these studies as well as any quality review that hospitals and physicians do within their hospitals and practices are “protected” from public viewing.

The rationale behind this practice is that physicians or hospitals would unfairly be targeted due to unavoidable mistakes and that if results were given to the public, doctors and allied health care personnel would be less likely to participate in quality review.

First of all, I think participation in quality review should be mandatory.  The patient is being provided a service.  Therefore they are the true customer and deserve to receive information regarding performance standards.  Too many doctors and hospitals mistakenly think that the insurance company is their customer because that is who pays them.

Physicians say that practicing medicine is different from any other service such as providing tax information, car repair, etc. but the fact that they do provide a service to their customer, the patient, should allow for patients to be given information about quality of services so they know who may be able to best serve them.

I don’t think physicians should be penalized for every mistake they make but as baby boomers are getting older, I believe they would demand the same kind of service that they have come to expect in other areas.

I think that it will take a long time to  enact universal health care.  The government is trying to plan it so the entire universal health care program is not actually enacted until after the election of 2012.  But, I think people are already being fed up  by governmenal interferance and will not welcome even by preliminary actions because the country is in such a difficult mess as it is.

Dr. Murray states, “The bill likely to emerge from Congress will probably do a better job of moving us toward universal participation than of ensuring proper stewardship of our health care resources.”    Perhaps, repitition of services can be eliminated.  That contributes in a major way to cost of health care.  “Proper stewradship of health care resources?  I seriously doubt that will happen with a federally governmentally run health care system for reasons I have explained above.  Also, consider all the bureaucracy that comes with governemental intervention, constitutional issues and the program being able to work with state laws regarding health care.

It will be a very interesting endevor.

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Posted in Chronic Pain, consumer driven health care movemnet, DEA, FDA, governmental regulations, Health care issues, Medical System, Opioid therapy, Pain Management, Physicians, Politics | 4 Comments »

About Dying

2010-01-04 by

Today has not been a good day.  I’ve been having problems with pain and  I am lingering in depression.  I was telling Selch that my medication helps treat many of my symptoms but it can’t take away my disease.  My illness is like a dark invader who is always with me.  I feel him behind me.  Sometimes his dark hands rest on my shoulders.

There are times when I feel more freedom my illness  such as when I am praying.  My prayers are like a shield that guards against unwelcome thoughts.  In the best of times, I am with my Ishta (the desired form, the aspect of God that was given to me by my spiritual teacher.)  Listen to  Loreena McKennitt’s  Dark Night of the Soul.  It is a good description of the feelings I sometimes have.  The poem was originally written by St. John of The Cross, On a Dark Night.

Sometimes in the midst of a wonderful day-dream, I gradually see a small dark thread.  As I get closer, it becomes a long dark ribbon.  I know that it is my connection to death. I’ve considered touching it or perhaps even grasping it with a gentle tuggle.  Perhaps, I will do that someday.

Even though I have a terminal illness, no one can tell me how long I have to live.  It isn’t like some forms of cancer in which the doctor can make a determination based on survival rates.  This dark spider lays her “eggs” (sometime tau bodies) in various places within the frontal and temporal lobe.  No one can predict which neurons will die.

When I received a letter from my doctor’s office and Selch read those words Pick’s disease (FTD) , it altered my sense of physical self for the rest of the time I have left on Earth.

My life  has been filled with good times and bad.  There have been times when I was up to my neck in the mud of Earth immersed in life.  Experiences such as motherhood, marriage and career have drawn me into the same world as everyone else but at strange unexpected times I  have this sense of being on the outside looking in.

We all have to die and to find out that I will be living on the Earth a shorter amount of time than many of those I love dearly does make me feel sad.  Yet, now I have a sense that I may be going back to the place that I belong.

So, I do not fear death itself.  I call the dark presence an invader because I did not invite him to come and he draws physical life force from me pressing on my back forcing me to painfully exhale life energy.

We are not only our physical bodies.  I think what I fear more than death is the continuing experience of a faulty interface that will gradually  keep me from communicating that those that I love.  I’ve asked Selch if I will be able to find a way to tell him I am still here.  He says he will always know that I am here until I have departed from this life.

I have lost many things over 13 years of having a chronic pain syndrome and then five years of having symtpoms from my degenerative brain disorder.  I do not have  what people call their personal freedoms.  I’m not able to drive, I can’t do activities of daily living.  I have apathy about doing the most simple things  so I have to be constantly reminded even to drink water.  Yet, I am able to still read articles and stories on the computer and type on the computer.

As I mentioned before, the disease  has its own special design of destruction for everyone that it touches.  So, it is hard for me to explain to people  how disabled I actually am because I am still able to write.

In the last month, a few people who I know who have FTD have fallen several steps down the stairs of functionality.  It is hard to find anyone with FTD who can communicate.  I feel like there are a few of us are clinging to a lifeboat and when one of us slips down, it is a major loss.

Selch reminds me that this does not mean that the same thing  will happen to me but for me each time one of the members that falls off the raft,  is  a ray of hope has disappeared.

Before I started this post ,I read an article,  Hard Choices for a Comfortable Death: Sedation. The author of the article writes about his discussion about intraveneous “terminal sedation” with different doctors who are taking care of patients who are dying  in various hospitals.  The process of  IV “Terminal sedation”  involves bringing people with a terminal illness into the hospital, some who have been receiving home hospice care, because they are have extreme discomfort that can’t be managed by home hospice.

The doctor has a lot to consider in these situations including how the family feels and  previous wishes of patients to die at home with their loved ones that were made before they started having intolerable pain.

I’m not sure about how I feel about IV terminal sedation.  Many doctors argue that it is the disease itself  at the end that kills the patient, not the pain medication ,that they become tolerant off  in a short period of time.  For instance, how would that work for people like me who are already considered “opioid tolerant” meaning that I have been treated with narcotics by a physician over a long period of time so it requires a higher dosage to treat my pain.  Then I wondered if once people who are opioid tolerant are undergoing  IV sedation, are they still feeling pain at some level?

Many times during terminal IV sedation, the patient is not given any fluid or nourishment.  The physician explains that it helps the patient to rest more peacefully because the body isn’t stressed having to process liquid and food.  But, are they actually being “starved to death?”  These are questions I can’t answer.

I have been under IV sedation many times for many procedures.  Several times IV sedation was considered necessary for the doctor to give injections that contained pain relieving medication into my spinal nerves.  I received 8 course of IV sedation when I was in the hospital two years ago  for a month due to an enormous  deep vein thrombosis.  Those  attempts at IV sedation were not very successful in treating the pain caused by the procedure because the doctor wanted to give me less IV sedation because I was on a high dosage of pain medication.  I wish sometimes that chronic pain patient’s could carry a pocket pain management doctor around with them when they needed to undergo any treatment or procedure.

It would be nice to see the cheery young face of my nice Polish doctor explaining in a very scientific yet simple to understand manner to the no nothing about pain doctor why I actually require more IV sedation.

I have noticed from my personal experience and after reading multiple  articles about children and people who are chronically ill that have to undergo multiple procedures under general or IV sedation. They  are more prone to nightmares which involve removal of body parts, horrible creatures performing procedures, etc.  I have several dreams that would rate closely whith some of the most horrific movies ever made.  Perhaps that is why I don’t bother to watch the movies, I can see something much more grueosme and life like for no money in my dreams.   Perhaps the pain that we do not supposedly feel during procedures, sedation, altered states such as comas  is stored is displayed in other mediums  such as our dreams.

To sum it up, I am not totally sure that IV terminal sedation is a total painless, uncomfortable way to spend your last days or weeks on Earth.

Obviously, it has benefits for the family because they don’t have to see their loved ones suffering but on the other hand they are unable to talk to them before they die.

That brings one other thing to mind.  When we appear to be not there are we really still there?  It is something I’ve discussed before and I’m sure I will discuss again.

Bye for now

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Posted in Chronic Pain, Dying, Living with Illness, Opioid therapy, Physicians | 1 Comment »

Prescribed drugs versus generic equivalents

2009-12-31 by

All of us who have a chronic illness have been faced with the decision to have a medication filled as the doctor prescribed or buy a generic equivalent.  Many times when doctors write a prescription, they check a box that allows for a generic equivalent of the drug to be prescribed.  A generic equivalent of a drug is supposed to be the same drug made by a different manufacturer usually at a cheaper price.

But does the generic equivalent allows work exactly like the originally prescribed drug?

A recent article in the NY Times, “Not All Drugs Are the Same After All”, discusses this issue.

According to F.D.A. rules, the new generic version must “have the same active ingredient, strength and dosage form” as the brand name or reference product.

The article provides a good discussion about whether or not this means that the generic equivalent works the same way as the prescribed drug when used in treatment of a patient’s symptoms.

From my own experience, results using generic drugs have been mixed.  In recent years, most of my physicians have allowed for generic equivalents for the drugs they prescribe.

Some physicians may lean towards using the prescribed drug but they are assured by studies given to them by pharmaceutical representatives that the generic equivalent is safe and effective.  They don’t have time to stop and think that these studies are done by the manufacturers and it is in their best interest for the studies to show that generic equivalents are equal to the originally prescribed drugs.

Also, many insurance companies refuse to pay for the more expensive “brand name” drug. These factors give the doctors incentive to prescribe generic equivalents.

I first noticed that there might be a problem with taking a generic equivalent when I was prescribed Cipro by my doctor for a urinary tract infection.   At that time Cipro was expensive and I didn’t have prescription insurance so I opted for the generic equivalent.  I took the medication as prescribed but after 10 days I still had symptoms of a urinary tract infection.

I made a follow-up appointment to see the doctor.  He had ordered a urine culture and sensitivity which shows specific bacteria and which drugs are likely to be the most effective in treating the infection.  He scratched his head and told me that the Cipro should have worked.

He looked at my chart and saw that I had an allergy to sulfa drugs.  Antibiotics with sulfa are used often for treatment of urinary tract infections.

He told me that he couldn’t but me on sulfa and some of the other antibiotics that he might consider I had problems taking them in the past due to stomach trouble.  The doctor said Cipro should have been the target drug for me.

Then he asked me, did I take Cipro as prescribed or did I choose to take a generic equivalent.  I admitted that I had taken the generic equivalent in consideration of cost of the medicine.

He suggested I  “bite the bullet” and pay for the Cipro as prescribed.  He explained to me that generic equivalents do not always work as well as the original drug because the manufacturers are allowed some variations in the way they make the generic equivalent.

After taking the new prescription of Cipro for three days, my symptoms disappeared and I finished taking the medication as prescribed by the physician.

For the most part, generic equivalents have been satisfactory in treating my symptoms.

When I first began to develop my complex regional pain syndrome, my primary care physician prescribed Percocet.  The pharmacy filled the prescription as Percocet.  I took it as prescribed and it did help to relieve my pain.

Because of ongoing pain problems, I was admitted to the hospital and was seen by a doctor who was a pain management specialist.  He ordered some injections of various medications and for the first time in a long time my pain was under control.

He suggested that I see him after I got out of the hospital.  Unfortunately, when I called to make an appointment, I was told that he did not have an opening for a new patient for three months.  They offered to make an appointment with a doctor who had just joined the practice.

He came in to see me and I talked to him about new medications the other doctor had suggested I might try.  He explained that he was hesitant to give me any narcotics for pain relief.  I asked him if could at least give me Percocet because it had helped decrease my pain in the past.  He said he would increase the dosage of Percocet, allow me a larger quantity and that should help my pain.

After I received my prescription at the pharmacy, I discovered that it was a generic equivalent. I didn’t think much about it because I had taken many generic equivalents.

After a few days of taking the medication, I did not obtain the same relief from pain that I had previously even though the dosage was higher and I was able to take the medication more frequently.  Also, the new medication made me sick to my stomach although the original Percocet had only made me feel slightly nauseated.

I called the doctor back a few times but he refused to give me anything else for pain.

I didn’t remain under the care of this physician for much longer.  I do think that the generic equivalent didn’t work as well as the original Percocet.

These problems I have had using generic equivalents have not stopped me from using them. For the higher priced medication that I take, if a generic equivalent is available, the insurance will refuse to pay for the prescribed “name” medication.

Using generic equivalents has usually not posed a problem for me.  There have been a few instances that a doctor wrote a letter to the insurance company because he or she insisted that I have the medication as prescribed.

When doctors do this, there is usually a good reason for it such as they have had past experience with less than optimal results for patients taking the generic form of the drug. Doctors do not like doing paperwork so for them to go out of their way to write a letter to an insurance company regarding non-payment for a certain prescription drug means that not receiving that medication is having an impact on the patient’s recovery from symptoms.

For the past two years, I have had a continuing problem with my Fentanyl medication because my insurance company refuses to pay for the expensive Duragesic brand name.

The problem is not with the Fentanyl itself but with the adhesive in the patch.  Pharmacies usually offer at least of couple of generic brands for Fentanyl.  The Mylan patch is a smaller patch that contains Fentanyl. The Fentanyl is not distributed in a clear pouch like the Duragesic brand.  It is coated in the Mylan patches.

Some patients prefer Mylan patches because they are smaller and because of the way the Fentanyl is distributed in layers of the patch, the patch can be cut so the user under a doctor’s supervision is able to cut the patch down to a smaller dose.  This gives people who are trying to reduce the amount of Fentanyl they are taking the advantage of decreasing the dosage in smaller steps than are provided for with the regular strength of patches.  For instance someone who is taking 75 mcg. patch and needs to reduce their dosage with the Mylan patch they do not have to go all the way down to the next available lower dosage patch which is 50 mcg.  They can cut the patch under supervision from their doctor to a lower dosage that is higher than 50 mcg.

I have never been in the position to need to lower my dosage.  I was given the Mylan patch by a pharmacy twice because that was the only brand they had in stock and in the hospital once because it was the only brand they had in stock.  I did not like the Mylan patches.

I wear the patches on my back and the patches did not stick as well nor did they provide the amount of Fentanyl delivery to my system that I was accustomed to.

For many years I have used the Sandoz generic Fentanyl patch without any problems. It is similar to the Duragesic patch with the clear pouch.

A little over a year ago, Sandoz changed something regarding the adhesive for the patch.  After that, I started having trouble with itching, redness and irritation at the patch site.

I tried wearing the patches in different locations but due to fat stores because of recent weight gain, the Fentanyl was being stored in the fat and was not being delivered at the same rate to my blood stream.  I had increased pain and withdrawal symptoms.

So my husband has had to become aggressive about making sure ever bit of adhesive is removed from my skin after taking off a patch and we have had to change the placement of my patches more to the side.

Some may consider this only a small inconvenience but any inconvenience causes more stress which as you know leads to more pain and other problems in someone with a chronic illness.

I hope this post has provided some issues for you to think about when you choose whether or not to use a generic equivalent that may help you in receiving optimal care for your condition.  Always consult your doctor before you make any decision on changing medication.

Posted in Chronic Pain, FDA, Health care issues | Leave a Comment »

Forcing people to buy healthcare insurance

2009-12-22 by

Today I read an article in the Los Angeles Times about forcing people to pay for insurance coverage. See the following article: http://www.latimes.com/news/nation-and-world/la-na-healthcare-qa21-2009dec21,0,3694244.story

Any time the government starts requiring people to buy health insurance coverage I am afraid that we are heading down a slippery slope.  As the article discusses you run into the problem of young healthy people having to pay for elderly people who are sicker as well as people who have chronic illnesses who use more health care resources.

The problem is with governmental involvement as we’ve already seen with Medicare and Medicaid, is that everyone who is working has to already pay higher taxes to keep these programs going.

Low middle-income to middle-class income families are already feeling like they are overtaxed for existing programs.  To ask these people who are getting by day by day to pay for mandated insurance coverage in addition to taxes they already pay for existing programs is going to reduce the amount of money consumers have to pay for goods and services that drive the economy.

The government proposes that perhaps young healthier people would be able to pay lower premiums that would provide less coverage. That still doesn’t answer the problem for these families when someone in their family has a major illness.

If these people are still paying taxes for existing programs and having to pay for the healthcare mandated insurance premium where are they going to get the money to pay for healthcare expenses that are not covered by their policy?

Also, every time the government gets involved in any industry the people end up having to pay more money for all  the added bureaucracy that goes along with governmental involvement.  Red tape includes additional staffing to deal with paperwork required by the federal government and additional people to oversee the people who deal with red tape and paperwork. It’s a never-ending cycle of waste and confusion.

Considering my experience with working in the healthcare industry and also working for a company that contracted with HCFA in addition to my struggle in finding treatment for my illnesses, I feel that the government should be kept  out of the healthcare industry as much as possible.

For example, one reason the government and insurance companies became involved in the way that doctors practice medicine was because of the cost of lengthy inpatient hospital stays.  So the government started requiring hospitals to discharge Medicare and Medicaid patients within preset time limits. These limits were based on guidelines set by predetermined diagnosis related groupings based on the diagnosis of the patient including comorbid conditions.

Unfortunately, this reduced the quality of care received by some patients. This required the government to add additional expenses to the taxpayer to fund peer-reviewed organizations to monitor quality of care that patients received.

The cost of care was then shifted to outpatient care.  The intention was to reduce healthcare costs. Due to the fact that patients go to see different healthcare providers for different health problems,  tests are duplicated at each health care provider that the patient sees.

Insurance companies followed this practice.  So, instead of bringing the patient into the hospital and having several specialists see the patient during the hospital stay and then being discharged. Patients go from provider to provider where tests are duplicated and there is no continuity of care.

I can say from my own experience as a patient having complicated GI symptoms, that I spent years going from doctor to doctor trying to find out what was wrong.  Even when the doctor admitted me to the hospital, he or she did not call in life specialist to get to the bottom of what was wrong with me.

Instead, each doctor repeated the same lab tests and C.T. scans every time I went to see a different doctor.

A big problem is that there is no centralized medical record containing the patient’s history.  I think this problem could be solved by a service that would provide the healthcare consumer with an ongoing copy of their electronic medical record put onto a disc that the doctor could insert into his computer.  That would provide an updated history and test results for the patient. The doctor then would not have to waste the time and money going over histories and ordering additional tests.

I believe the key to successful healthcare reform would be a consumer driven healthcare system that allowed doctors to practice medicine the way medicine should be practiced.  If the consumer was made aware of all the information in the record and the doctor acted as an advocate to help the patient understand any question the patient might have about their healthcare, this would decrease this communication and misunderstandings that increase the cost of health care.

Once information was invited to the consumer, it would be in the doctor’s best interest to provide good-quality of care to the patient. There would also be an incentive for providers to reduce cost of care.  This incentive would come from the knowledge that patients had of care that was being provided them by health care providers.

The outdated model of doctors keeping information from their patients in the best interests of the patient is outdated. People are use to seeking information from the Internet and with the consumer driven movement of healthcare announced enough resources would be available to help the patient understand the care that they are receiving.

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Posted in consumer driven health care movemnet, governmental regulations, Health care issues, Medical System, Physicians, Politics | 3 Comments »

One of Those Days

2009-12-19 by

Blogging down under.

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Posted in Living with Illness | Leave a Comment »

Reunited with my Recliner

2009-12-18 by

Selch and I have relocated due to an employment opportunity for him.

Our temporary quarters are in an extended stay hotel room.  It had a rather uncomfortable armchair. Selch, being the ever-so-thoughtful great guy that he is, had my leather Lazboy recliner moved in. I usually remain in it 24/7, except for occasional outings to see my favorite doctor in Manhattan, a movie, or an occasional trip to a restaurant that serves gluten-free food.

Anyone who has to sit for long periods due to illness knows that a comfortable chair is necessary equipment for getting by day-to-day and night-to-night.

In addition, my view has been wonderfully enhanced by two playful dragons on a room-divider screen.  What is behind there is a cavern of clutter, as the “closet” area has no door.

Now, I am becoming settled in my new nest.

It makes me want to sing:    http://www.youtube.com/watch?v=glC9jt9k

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Posted in Chronic Pain, Living with Illness | Leave a Comment »

Giving your symptoms names

2009-12-18 by

Any one with chronic pain or chronic illnesses knows that to get by it is best to maintain some sense of humor, no matter if anyone else “gets” it, you know what you mean, that is all that matters.

I saw this cute post today:

Have you named your illness symptoms? That may sound like an odd question, but there are some very good reasons for giving your symptoms names. One of them is this: when you give one of your symptoms a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.

Here’s an example of what I mean: if you have a severe migraine, you may say to a friend or to yourself that you’ve been having awful migraine pain. But when you do this, you can easily feel like a victim. If instead, you tell your friend or yourself that “Sylvester” has been acting up and making himself felt, you don’t make it personal, so you are much less likely to feel like a victim.

A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them. When you do that, you will probably find that you feel a sense of relief and even freedom.

You can also talk to and even have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know. You can ask them what are the things you do and the situations that make them worse and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.

End of Post.

If people with multiple personality disorders can do it, we should be able to be as equally creative or more.   Illness may narrow your abilities to do certain things but it gives you an opportunity (when you are not trapped in a whirlwind of pain and unwanted thoughts) of time to reflect and open your mind to possibilities like when you were a child looking at the stars or the clouds.

I read recently that physicians are finding some people who have FTD while they lose their ability to process numbers etc. are becoming more creative and are more able to express  themselves artistically.  There are many ways to be artistic: painting, drawing, writing, collaging, making jewelry, etc.  I participate in something I call creative television watching.

I love to watch Turner Classic Movies.  Sometimes when I am watching a movie for the second, third, fourth time, I imagine what it would be like if they re-arranged the furniture, if the guy hadn’t gotten on the train, or if he had gotten on the wrong train or maybe the train didn’t show up at all.  After a good movie often I think about the movie and the characters, imagining what might have happened  after the end of the story, an entirely different story perhaps.

I think about possible future inventions and one gadget I would really like would be something that connects to your brain patterns and to my favorite movie so that I am able to take the characters and create additional scenes and plotlines.

You might think I have too much time, but my time like everyone else’s time is limited.  I just know that my curtain call for this life character is sooner than I use to believe.  I wonder when you  leave off stage does someone direct you to the right or the left or do you just stumble out into the audience?

Back to the naming illnesses.  I think I’ll give the name game a try.  My father use to call me Myrtlerayleenajane.  There’s a few names to start.

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Posted in FTD, Living with Illness, Uncategorized | 1 Comment »

Regarding my posts

2009-12-11 by

I appreciate everyone who is stopping by to read my blogs.  I want everyone to know that opinions expressed are my own. I am not affiliated with any company or organization.

As I have explained I am an individual who has many illnesses including complex regional pain syndrome and FTD which is a terminal degenerative brain disease.  I spent years trying to find out what was wrong with me and I know that thousands of other people have the same experience.

I have decided in the time I have left to be a patient advocate for all people who are suffering chronic illnesses.  In this way, I am able to do something good with the blessings I have been given.  I am mostly confined to home and the only way I am able to help people is by blogging, posting, and writing.    I  advise people as always  to first get advice from their physicians before they try any treatment.

Thank you again

Posted in Uncategorized | 1 Comment »

The Lady in Red High School Days

2009-12-08 by

The lady in red, High School Days

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Visit with FTD Research Specialist

2009-12-04 by

Monday, at 8 a.m. sharp I arrived at the office of a physician who does research in FTD.  Selchietracker as always my faithful companion accompanied me.  The physician’s office is affiliated with a local medical school.  I had been to other clinics in this medical school for various reasons and not been satisfied with the physician’s diagnosis and/or treatment.

I was willing to give this physician a chance.  He had been recommended by a person at National Conference for FTD which Selchietracker attended a few months ago.

After we were escorted to his office and we met the doctor, the first thing I realized was that I had met him before.  I had worked in the local medical community for several years dealing with many physicians so I assume that I have met him somehow in that capacity.

Unfortunately, because we are in transition and about to move again, Selchietracker could not locate the disc which contained my MRI film at the last-minute when we were walking out the door.  He did bring documentation from a doctor who diagnosed me at Johns Hopkins as well as the results of the MRI and other tests as well as her conclusion and findings.

He asked us what we wanted from him, confirmation of diagnosis? Did we seek  treatment options-he quickly answered there was no treatment, or  he asked, did we need further information?

Selch explained that we would like to identify what strain of FTD I might have and find out further information about research trials, etc.

First the doctor bragged about  their extensive collection of autopsy slides for FTD patients.  Apparently they have the largest number of autopsy slides for FTD in the country.  Well that was okay but not very helpful to me since I am still the walking wounded.

Next, he put me through a battery of neuropsychiatric evaluations.  Any of you who have had to do these tests or watch your loved one with FTD complete these tests know that it is no fun to not remember simple words.  I especially fear the dreaded count back in 7’s from 100.  I can never get past the first few, major mental block.  Or the pictures you are required to draw of the connecting shapes and a three dimensional square.  My pathetic attempt looked like the work of a three-year old and to add insult to injury, he told me he was labeling my work with my name.  Come on, enough of kindergarten.

Then he did the usual neuro exam.  I know the drill well.  I could probably perform the exam blindfolded without the assistance of the doctor.  Of course, nothing wrong there except his breath.  I do wish doctors would check their breath before approaching a patient.  There is nothing like being poked and prodded and having to hold your nose.

After the exam, we discussed my history of symptoms.  He asked a few appropriate questions.  Then came the true test. What about my behavior?  Selch proudly proclaimed that despite my other symptoms commonly associated with FTD including apathy towards activities of daily living , that I was still a compassionate person who understood the affects of my illness.

Despite the fact that the physician had not reviewed my MRI and did have ample evidence from a doctor from Johns Hopkins who specializes in FTD that I did have FTD,  he proclaimed I did not have FTD because my behavior was not appropriate.

Because of my problems and reactions to nightmares, he conceded that I did probably have Lewy bodies.

For a brief description about Lewy bodies see: http://en.wikipedia.org/wiki/Lewy_body

For more information about Lewy bodies and FTD see:  http://ftdtheotherdementia.com/whatisftd.html

Selch explained to the doctor that there is a variant of FTD that has Lewy bodies.

The doctor stubbornly remarked that he had seen thousands of FTD patients (FTD is supposed to be still considered rare and it isn’t as if he is attached to a major FTD clinic, so did he mean thousands of live people or thousands of autopsy slides that he mentioned previously) and every single one of them male and female had a history of acting out and not understanding anything about their illness.

I told him that I could produce six people diagnosed with FTD who are able to attend a weekly chat and discuss their disease process.

He gave no response.

So, he wished us luck and suggested we send  him a copy of my MRI.  I think we will be heading to greener pastures.  We are moving closer to a well-known clinic for FTD patients so I think we will continue down the yellow brick road to meet Oz.

Because, because of the wonderful things a good physician does, like PET scans, etc.

I realize the best way to get a functional MRI,more complex scans  or trial treatment is to be enrolled in a study.  Am I willing to be a guinea pig?  I’ve been poked, prodded, scanned, panned, scoped, doped and have never lost hope since I was a small child.

I still firmly believe that there are many others like me that are out there but they haven’t been diagnosed.  Most neurologists don’t know much about FTD.  If depression and anxiety are the first features, then the patient is likely to do a lot of couch time.  I went to many doctors for many years before a doctor discovered that I had a complex regional pain syndrome, with a domino effect other diagnoses fell into line .

I was diagnosed with FTD because of Selch’s practice of smoothly prodding doctors to order tests needed to evaluate my condition.  Also, we have learned when presented with an abnormal lab result or other abnormal finding that cannot quickly be explained away, we will seek multiple consultations until we are satisfied with a diagnosis or have reached a temporary point where we have to stop until other doors open up in the future.

I love when we go to Manhattan to see one of my doctors.  While we are on the streets and Selch is rolling my wheelchair down the uneven sidewalks ,I always see someone with a poster that proclaims one thing or another.  I also think of those comedians who say, “Here’s Your Sign” and “You might be a redneck if…”.  I imagine rolling around holding a poster that says IF YOU HAVE THE FOLLOWING SYMPTOMS YOU MIGHT HAVE FTD SO GET HELP NOW WHILE YOU STILL HAVE A LIFE TO LIVE.

Instead I remain in my “sick” recliner, preaching to the choir.  Maybe, someday, somewhere, someone will find me.

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Posted in Chronic Pain, Dying, FTD, Medical System, Physicians, Treatment, Uncategorized | Leave a Comment »

Opioid Treatment and the Chronic Pain Patient

2009-12-04 by

Today I read the following post

Long-Term Opioid Therapy – What Are the Effects?

Most people who need to take opioids on a long-term basis for chronic non-cancer pain are understandably concerned about what kind of effect it will have on them.  Many have mistakenly believed that opioids destroy both the body and the brain – and possibly even shorten lives.  Although pain management experts have long contended that opioid therapy is not dangerous when properly administered, until now there has been no actual research on long-term opioid use (10 years or more) to back them up.

Enter Forest Tennant, MD, who undertook a first-of-its-kind research study evaluating chronic pain patients who had been receiving opioid therapy for 10 to 35 years.  The results of his study should be extremely encouraging for patients who need long-term opioid therapy as well as their doctors, some of whom may have been hesitant about it.  Tennant concluded that the significant improvements in quality of life and physical functioning from opioid therapy are so positive they outweigh any negative complications, which can be easily managed.

Research Methods

Tennant’s study looked at 16 female and 8 male chronic pain patients between 30 and 79 years of age.  Their chronic pain conditions were:

Neuropathies and Arthropathies – 29.2%
Spinal Degeneration – 25%
Abdominal Adhesions or nNeuropathies – 20.8%
Fibromyalgia – 12.5%
Headache – 8.3%
Hip Necrosis –4.2%

The subjects had all been receiving continuous opioid therapy for 10 to 35 years.  All were taking a long-acting form of morphine, oxycodone, fentanyl or methadone and one or more short-acting opioids for breakthrough pain or pain flares.  They all also took additional medications such as muscle relaxants, sleep aids, hormone replacements and dietary supplements.

Study Results

Almost all of the patients (22 of 24) said their pain had permanently decreased over time.  And the vast majority (20 of 24) felt their opioids still provided the same relief as when they started treatment.  All of the patients  reported one or more functions or activities they can do now that they couldn’t do prior to beginning opioid therapy (i.e., get out of bed everyday, take walks, shop or visit friends).

Several new medical conditions developed in the group over the 10+ year period, such as hormone abnormalities, weight gain, tooth decay, tachycardia, hypertension, osteoporosis, hyperlipidemia, and diabetes.  There was no clear way to determine whether these conditions were caused by the pain, the opioid therapy, the natural aging process, or were just inherent in the patients; however, all of the conditions could easily be medically managed.

All but one of the males in the study experienced lowered serum testosterone, a known complication of opioid therapy, which can be controlled by hormone replacement therapy.

Notably, there were no neurologic complications including dementia, hyperalgesia, tremor or seizures.  Nor were there any liver, kidney, or gastrointestinal complications, except for minor constipation.
Conclusions

Rather than causing serious health problems, Tennant suggests that because of the decrease in pain, opioids may actually allow or even promote neurologic healing.  He goes on to suppose that opioid therapy may prevent a number of medical complications of pain and also may prevent early death due to the over-stimulation of the pituitary-adrenal-axis or possibly electrical stimulation produced by damaged nerves.  Tennant acknowledges that this is a small study and states that much additional study is needed to determine cause and effect of medical conditions in opioid-maintained patients.

Finally, Tennant concludes, “Even though the number of patients evaluated here is relatively small, the great improvement in their quality of life and physical functioning is so positive and the complications of the therapy so easily managed that long-term opioid therapy should continue to be provided and evaluated.”  End of article


I wish this information was more readily available to patients who are considering pursuing opiate treatment for their pain as well as to provide correct information about narcotics to the general public.  Physicians are using many different types of medications to treat chronic pain disorders and some of them have shown promise in treating chronic pain.  What many people don’t realize is that many of these other medications have more side effects and medication interactions than narcotics.

Opiates are still a main stay of treatment for chronic pain patients and there are good reasons for this.  Although opiates have become a totum of evil due to a  massive media push claiming that opiates  by their very existence have caused a rise in prescription drug abuse.  Opiates of themselves are not evil and it is more of a reflection of the culture, change in family dynamics etc. that are the cause for a “rise” in drug abuse involving prescription narcotics.  This phenoma is not because of sudden lax rules in prescribing narcotics by physicians or not the fact that narcotic prescriptions are on the rise.

When I think about when I was growing up in the 70’s, doctors were more lax about prescribing narcotics then and narcotics were available.  There is a rise of availability of narcotics strictly due to their illegal status because the illegal drug business is profitable.  Perhaps because of the constant portrayal of street drugs as “evil” more people have taken to “abusing” prescription pain medication because it seems more socially acceptable and the product received in deemed to be safer.  Narcotics are not harmful to patients who take them as prescribed under a doctor’s supervision. There has been no study that proves that long-term narcotic use is harmful to the patient’s internal organs.  Studies actually show more damage to patient organs from continuation of chronic pain.  New studies involving chronic pain show that it is different from acute pain and the result of continuing chronic pain can have a devastating effect on the mental and physical well-being of a person.

The truth is that thousands of people suffer from chronic pain and bad media press, increased governmental regulation and shift of  the War on Drugs to prescription medication  has made it more difficult for patients who suffer from chronic pain to receive the treatment they need to deal with their illness.

Insulin is not with held from diabetics and so in the same way opiates should not be with held from patients who suffer from chronic pain.

Because narcotics have received such a bad rap, it is hard for people who do not have chronic pain or are an advocate for a loved one or person that has chronic pain to understand that receiving narcotics under a doctor’s supervision does not equal drug abuse.  Any person who has chronic pain and takes narcotics will eventually become physically dependent on the medication.  It may surprise people to know that many other drugs cause dependency such as anti depressants.  That is why doctors are careful to wean their patients off of anti depressants.  If you do not believe that withdrawal occurs for these patients, then talk to a few people who have been on a certain antidepressant for a long time and went off of the medication cold turkey.

Drug dependency does not equal addiction.  Addiction requires a psychological craving for the drug and most people who take opioids as prescribed do not develop a psychological dependence.  Many doctors have confused a patient’s request for a higher level of pain medication as drug seeking behavior when it is actually a sign that the patient’s pain is not under control.

The War On Drugs for all its good intentions has not reduced the amount of illegal drug traffic.  It has created many jobs for people in law enforcement, courts and the prison system.  But, the government still has the same problem that they had when they tried to prohibit alcohol.  People want to be able to use these substances as they do alcohol and nothing the government can do will decrease that desire. I am not saying that making all drug use legal will solve all problems regarding drug abuse.  I do not know if that would be possible in our society.  By criminalizing drug use  criminal industries will naturally look to drugs as a way to obtain profit just as they did when there was a prohibition on alcohol.

For the War on Drugs to work, people would have to change their minds about the way they feel about their personal right to use what substances they desire in their daily life.  The media wants everyone to believe that if the government did not “control” drug use that there would be a massive apocalyptic  like wave of drugged out zombies who would destroy everything near and dear to the law-abiding citizen’s heart.  The problem with this is that there just isn’t any proof that this would be so.

I’ve seen recent so called documentaries about the plight of opium addicted women and children flooding the plains of the U.S. as pioneers progressed towards unclaimed country in the 19th and early 20th century.  Yes people did become physically addicted to opium and cocaine.  Also, snake oil salesmen sold products to people that could harm or even kill them.  It was the original intent of the FDA to protect people from falling prey to these snake oil salesmen. The truth is when almost anyone who likes to do genealogy  searches for information about ancestors such as Great Uncle Grover or Great Grandmother Pearl, they usually find brief accounts of  people struggling to survive on the farm or ranch mixed with amusing anecdotes.  Rarely, does anyone find personal accounts recalling tales of long-suffering drug addiction and family interventions among the common folks.

Those heart breaking accounts of families being torn apart by drug abuse and painful intervention are recent occurrences are certainly real ,but they  have been mined by the media to feed the habit of the general population for reality based television.

I’m not saying that substance abuse isn’t a problem.  I am saying that things shouldn’t have gotten  to the point that the government has become so involved the Drug War that regulations and red tape are surrounding chronic pain patients and their doctors, causing doctors to practice defensive medicine and keep many chronic pain patients from having a decent quality of life.

How has it happened that there is much more government interference in the way that physicians practice medicine in regard to prescribing narcotics?  The DEA, not having much success in winning the War on Drugs, in my opinion  has switched to softer targets.  Because when it comes down to it in any law enforcement situation be it convictions by the district attorney or tickets written by the police, numbers count.  High numbers of convictions or in the case of the DEA, documentation that they are making a difference in decreasing the business of “illegal drug use”  means success and more funding.

The following is a policy statement issued by the DEA regarding the wonderful ways they are changing regulations to protect against drug abuse of prescription pain medications and how their new regulations actually make it easier for the doctor to prescribe schedule II narcotics to the patient.  Also, they mention according to their statistics they really haven’t reprimanded very many doctors and so their impact of pursuing doctor’s in their medical practices is small.  It is explained at the following site http://www.justice.gov/dea/speeches/s090606.html.

Many physicians and advisors in the health care industry are concerned these acts by the DEA may only be window dressing in light of  tougher regulations  proposed by the FDA.

The real story is that new FDA regulations include the possibility of requiring doctors and allied health personnel to take special training classes for each scheduled narcotic  they provide that is on the government’s list.  See http://updates.pain-topics.org/2009/10/dea-opioid-rems-intimidating-future.html regarding the possible future and scope of this training.   News about further requirements from the FDA on this matter are supposed to be published today, December 4, 2009.  I have also read in various blogs that the DEA has a future proposal in which they would take the list of patients who receive schedule II narcotics and ration the amount of medication that they may receive.  The very thought horrifies me.

Now I will talk about doctors doing “business as usual” with the DEA.  The DEA since the 90’s has taken the bold step of raiding doctor’s offices where they suspect illegal drug trafficking. There were some actual “pill mills” but those were disposed of quickly and easily. It is true that the DEA has not raided “many” physician’s offices but they took pains to raid doctor’s offices in a way to make an example to other physicians.  They first selected small and rural physician practices in which physicians prescribed “a more than average” amount of pain medications.  I am not just talking about time released scheduled narcotics but narcotics such as Lortab and Percocet as well.

A family practice doctor in a rural community may look like he or she is prescribing “more” narcotics but actually he or she is seeing the same patients more often over a life time so if the doctor had several elderly patients with chronic pain conditions, it would appear he or she was prescribing more narcotics than the average physician.

The tactics of the DEA actually would appear silly in their draconian nature if the results of their actions were not so sad.  They have targeted certain physician practices as described above.  They are already provided with lists of patients who have narcotic prescriptions filled, as well as what pharmacy the prescriptions were filled,  by what physician and when the prescriptions were filled.  With this information, they were able to do routine background checks on patients as well as find patterns of any patient who had narcotics filled at different pharmacies, by different doctors within a certain period of time.

Any patients of the doctor’s practice that the feds intended to review who  had a history of drug related violations or had patterns indicating “doctor shopping” for narcotics were contacted by the feds.  The feds threatened prosecution of various drug offenses and offered “deals” to these patients if they would “rat” on their physicians.  Ratting met anything from simple statements that the doctors provided them a prescription for narcotics to confessions that the doctor had actually known about their drug history and “drug shopping” activities an chose to ignore it when giving them a narcotic prescription.

A doctor can be very prudent in his practice and still not know about a patient’s drug history, recreational drug abuse or “doctor shopping” involving other doctors because they only know what patients are willing to tell them.  Most doctors if they suspect a history of drug abuse or “doctor shopping” will take appropriate measures in dealing with these type of patient.  There is no reason to think that any prudent businessman wouldn’t do so and especially doctors who have taken an oath to practice medicine.   Yes, the primary focus of many doctors has leaned towards  financial advancement.  With Medicare fraud, regulations by insurance companies and new Joint Commission requirements, doctors are not going to risk their practice by prescribing narcotics to people who they know would abuse them.

After the DEA obtained information about certain patients and “confessions”, they would approce the doctors with the evidence and ask them if they would prefer to settle out of court or face a public jury trial.

Most doctor’s settled out of court and were given reprimands.  Those brave courageous doctors who chose to fight the good fight and bring their case to court found themselves confronted with over eager district attorneys who were willing to prosecute to the fullest extent of the law and beyond.  Most of these doctors lost their medical practices and their licenses.  Many chronic pain patients who lived in small communities were stranded without a way to obtain more pain medication.  Other doctors in the area were certainly not going to run the risk of their fellow fallen physician.

Word soon spread to other physicians across the country.  This caused a wide spread panic among physicians.  Some general practitioners and even pain specialists decided to get out of the business of prescribing opioids.  Other pain management doctors consulted their lawyers and started enforcing strict guidelines for their patients to follow if the patient wanted to continue opioid treatment.  The first things to arrive were physician patient pain contracts.  Patients had to sign lengthy documents in which they promised to be willing to undergo random drug testing, not to engage in any recreational drug use, to inform the doctor if they received any pain medications by any other physicians.  Any means all pain medicines down to a lortab given to you by your dentist after a dental procedure.

These rules were up to interpretations by the doctor.  Some doctors did as a paper exercise but some doctors used the pain contract to engage on some kind of power trip.  I don’t know if they were seduced by power or extremely paranoid but I have read multiple cases of patients being discharged because they did not inform the physician before they took a pain pill prescribed to them by their dentists and when they mentioned it off handedly to the nurse during the next appointment, they were discharged from the doctor’s care.  Once, I waited four hours in the doctor’s waiting room for a urine drug screen test.  The receptionist kept telling me to be a good patient and sit down.  Finally, I was discovered by a nurse as they were locking up for the day.

If a patient is discharged by a pain management physician for any reason, it is definitely a black mark on their record and it makes it more difficult for a patient to find another pain management physicians because the pm doctors do not want to take on the liability of someone who has been discharged from care.

New regulations to be enforced by the DEA  and FDA provide more red tape to gag the physician from providing proper opiate treatment to their chronic pain patients.  For information regarding requirements regarding classes that physicians must take see the following http://www.dhss.mo.gov/BNDD/BNDDnewsletter.pdf.

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Posted in Chronic Pain, Medical System, Opioid therapy, Physicians | 3 Comments »

Should Physicians tell Patients about Medical Mistakes?

2009-12-04 by

Today I read an article in Medscape regarding the issue of whether or not a physician should tell their patients if they make a mistake in the medical care of the patient.  You can read the article here.

I have suffered greatly because of physicians’ medical errors.

The first time, was in 1991. I had a D&C for a miscarriage.  After the procedure I continued to have bleeding and began to develop severe abdominal pain.  I informed my physician and the office said to make a follow up appointment.  I had the D&C where I lived and it was far away from my work place, so a secretary at my office got me in to see her doctor at the medical school clinic.  Over a course of three weeks, I saw five physicians.  None of them could figure out what was wrong with me. One of the doctors, did a pregnancy test.  She asked me if my stools were dark and I told her they were.  My pregnancy test was still highly positive.  She brought up the possibility of a tubal pregnancy but after consulting with the head of surgery she told me that wasn’t a possibility.

My last clinic appointment was with the head of surgery.  He examined me and reviewed my case and concluded that I was a post-partum neurotic.  He gave me a Demerol shot and advised me to go home.  Fortunately, a urologist I had seen was there and he said he thought something was wrong with me.  He said he was going to admit me to the hospital and he sent me down to GYN for a sonogram.

After they performed the sono, the doctor pulled out a huge, long needle.  I asked what they were going to do.  I was informed that they saw pus on my sono so they were going to extract it via my vaginal canal.

After they began the procedure, the physician turned towards the intern and told him to page the surgeon stat for emergency surgery.  He told me I had massive bleeding in my abdominal cavity.

They rushed me into emergency surgery.  I remember the doctors running down the halls pushing my gurney to the OR, all in slow motion.  A nurse told me I might not survive.  Fortunately, a top specialist in fallopian tube repair was on call.  I had a ruptured tubal pregnancy, not post-partum neurosis.  The specialist successfully repaired the tube.

After surgery, the urologist came in to apologize to me.  He told me that I had a tubal pregnancy.  All the doctors assumed because I had a D&C that I couldn’t have a tubal pregnancy.  The surgeon who repaired my tube had been a professor of the doctor who did my D&C.  He called the doctor and asked him the results of the D&C pathology report.  It showed no fetal cells.  Physicians are routinely supposed to read pathology reports after surgery, but the physician said it had been misfiled.  The doctor who repaired my fallopian tube told my original physician to call me immediately and apologize to me, which he did.

Fortunately, everything turned out okay.  I had a baby boy two years later.  Obviously this happened because of slightly unusual circumstances, tubal pregnancy, but there was gross physician error involved.

Did I feel better that the physician apologized.  Yes I did.  I still was angry that none of the other physicians, especially the head of surgery, did not come to see me after surgery and apologize.  Did I consider suing?  It crossed my mind but since I was in the medical profession I knew that there was no case because there was no loss of organs.

The second incident occurred in 1997.  I was having right sided abdominal pain.  I consulted a GYN and she told she would do surgery to remove abdominal adhesions.  She did a laprascopy but found massive adhesions. Without informing me or my husband or obtaining a surgical consult, she converted the surgery to a laparotomy. When she was trying to remove adhesions, she accidentally injured three nerves in my abdominal area.

After surgery I had trouble walking and severe abdominal pain.  She told me both symptoms would pass and sent me home.  For two weeks I difficulty walking and severe pain.  I saw her for a follow up visit.  She told me the surgery went well and that she thought I had a psychosomatic disorder that caused my pain.  She explained to me stress can do things to the body and put me on antidepressants.

I tried to see her again but she refused to see me.

I suffered with this pain for years and over the years it got much worse.  No one could figure out what was wrong with me.  I ended up seeing a pain management doctor for treatment of my symptoms.

In 2003, we moved and I saw a pain specialist who was a neurologist. He did some testing and told me I had reflex sympathetic dystrophy which is a chronic pain syndrome. He said after reviewing my records, my disorder had likely developed after a complication in the abdominal adhesion surgery.  I obtained my medical records. We discovered what she had done. Did I file a lawsuit? It was too late to pursue any legal recourse.  Was I upset?  Tremendously so.  It has affected my whole life.  I am tortured every day by severe pain.

Do I think that physicians should tell patients when they made an error in their treatment?  Of course. When you as a customer pay for services you expect to be informed if any errors occurred in the performance of your service.  What do you do when your accountant makes an error in your tax return, your mechanic doesn’t fix your car as he or see promised, or an appliance you were sold doesn’t work?  You complain to the appropriate people and expect an apology and an assurance that the problem with be fixed if possible.  If the service provider is unable to fix the problem, you expect some compensation.

So why do so many physicians not tell their patient about medical mistakes?  I think because as medical students, physicians come to understand that telling patients about your mistakes just isn’t the thing that doctors should do.  They should be seen by their patients as a person with superior knowledge in the medical field so the patient will be able to trust them.   Also, their medical malpractice insurance is ridiculously high and they are afraid that they will be taken to the cleaners in court.

First of all, almost all medical malpractice claims are settled out of court.  I have done quality peer review of patient cases with physicians.  Most people who find out that a medical mistake in their care end up not suing.  They may threaten to sue but often change their mind when they find out how difficult the process to recover any damages may be.

The attitude of the physician as the great healer, keeper of medical knowledge, and the condescending “protective” relationship of the doctor to the patient should have been thrown out years ago.  Today’s medical consumer is much more likely to want to know what is going on with their care and they also have more tools to research their illness via the Internet.  Doctors say that medical information on the Internet is incomplete and full of errors.  That is true, but a large part of the population of people are educated, especially the baby boomer generation.  They are use to obtaining and receiving information where and when they want it.  And half of the doctors look up medical information on Wikipedia!

So, as the baby boomers mature into their elder years, I believe the consumer movement in health care will explode with thousands of people seeking information about their medical histories and care.  It will probably change the practice of medicine.

I think the role of the doctor today should be that of patient advocate.  The doctor should be a team member in providing good medical care for the patient. He or she should encourage their patients to become informed and welcome their efforts to find out information regarding their condition.  If the doctor is able to communicate with the patient about their knowledge and continues to encourage good communication between the patient and the doctor, it is reasonable to assume that misunderstandings that lead to threats of lawsuits will decrease tremendously.

Many physicians say that they will not tell their patient about any mistakes they may have made in their patients medical care.  Consumer trends and new governmental reform may force them to reveal more information. They should get used to providing information to their patients.

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Posted in Chronic Pain, errors in medical treatment, Medical Mistakes, Medical System, Physicians, Treatment | 2 Comments »

Flupirtine: New Help for Fibromyalgia, FTD?

2009-11-22 by

As I mentioned in an earlier post, I bought a small quantity of flupirtine tablets from Germany. I wanted to see if it would help some of my pain that my usual opiates (fentanyl, methadone, hydromorphone) do not touch.  One type of intractable pain resembles Fibromyalgia (FM), an all-over achy pain, particularly deep in the joints, that comes and goes.  When it comes, it stays for hours or sometimes days.  It never just starts and then goes away.  I don’t know if it’s actually FM, or just another facet of my RSD.

Flupirtine maleate is a centrally acting, non-opioid analgesic that has been available in Europe for years.  It was used for lower back pain and post-surgical pain, and then for pain, generally.

Here’s the really important thing.  It also has CNS neuroprotective properties.   This is leading to its possible use for treating CNS neurodegenerative syndromes such as Alzheimer’s Disease, Multiple Sclerosis, Parkinson’s, Huntington’s and Creutzfeldt-Jakob disease, including cognition in CJD.  It might be useful for FTD treatment, too.  Flupirtine is currently undergoing FDA trials for treating Fibromyalgia.  It is also known in Europe as Katadolon and Trancolong.  It is not available in the USA, as it is not FDA approved.

Typical dosage for adults is 100mg three or four times a day, half that for children.  I’m not sure about long-term use or side-effects, yet.  Most of the information is hidden behind registration walls, and I haven’t had time to do all the registrations.

Here is what happened with my first dose:

  • 3:00 pm — fibromyalgia-like pain starts
  • 3:25 pm — took 100mg flupirtine by mouth
  • 4:45 pm — I realize the fibromyalgia-like pain is gone
  • 4:55 pm — bad headache in upper right forehead
  • 5:30 pm — took 1500mg acetaminophen and a short nap, and the headache’s gone

I think the headache is a side-effect of the flupirtine.  The location is exactly where I get a headache and feel electric sensations when I have flare-ups of FTD symptoms.  I doubt that’s a coincidence.  And headaches were reported as side-effects in a good article on flupirtine’s half-life for young, elderly, and renally-impaired patients.

PS.

I got the flupirtine from goldpharma.com, an internet pharmacy in Germany.  You have to fill out a brief medical history for a doctor to review to get the prescription.  The process was very fast, it only took a few minutes from submitting the history to get the prescription, and they shipped it the next day.  We got it in about a week.  The flupirtine came in 400mg tablets, so Selchietracker got a pill cutter, cut the tablets in half and then cut those halves in half to get the 100mg individual doses.  He thought it was kind of neat that the box of “Trancolong” also had the name in braille.  Geek.

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Posted in Chronic Pain, flupirtine, FTD, Treatment | 3 Comments »

New FTD Symptom

2009-11-12 by

I had a new symptom from my FTD yesterday.  I was suddenly not able to speak.  I tried.  The words were in my mind.  They wouldn’t come out.  I tried to force them out, but the mouth wouldn’t work.  Selchietracker gave me some Nameda, which seems to help my neurological symptoms.  I was able to speak after some 30-40 minutes.  These new symptoms are very scary.  I wondered if I would ever be able to speak again.  What would my life be like if I couldn’t?

Today, I participated in the Wednesday Chat for FTD sufferers at the FTD forum.  I lost track of time and almost forgot about it.  I had some trouble signing into the chatroom, so I was only able to get in during the last of the conversation.  It is helpful to be able to talk to other people who have FTD.

If you suffer from FTD, I suggest you join us on Wednesdays at 7 p.m. Central Standard Time.  For further info see the post about FTD chat on new posts under the FTD Support Forum.

I think I’ll head back to the water for some rest and relaxation.

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Visit with the Manhattan Pain Specialist

2009-11-12 by

Blogging has been on hold while I went to see my pain management specialist in Manhattan.  He’s part of the team at Dr. Portenoy‘s Department of Pain Management and Palliative Care at Beth Israel Medical Center across from Union Square.

I am going to try out a couple of new medicines.  One is well known, baclofen.  It’s a GABA-B agonist, that will, hopefully, do some good via effects on endocrine levels.  We’ll see. I haven’t started it yet, as Selchietracker wants to get a handle on how exactly to manage it.  It has a lot of side effects, and many of those signs and symptoms of adverse reactions, I have already as part of my illnesses.  As one doctor said, I am a complex lady.

The other is flupirtine,  a non-opioid analgesic that works on different receptors in the brain.  It should also have some neuroprotective effect.  That may help with the effects of FTD killing off my brain neurons.  It’s not normally available in this country, although it has been available for many years in Europe.   It’s now going through the FDA’s obstacle course as a treatment for Fibromyalgia.  Selchietracker got a prescription from Germany, and bought it from an internet pharmacy, Goldpharma.com.

After we got back from the trip, I got an alert from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).  Dr. Portenoy is helping to lead a major push to improve the medical community’s education and understanding of chronic pain, so that we pain suffers will be able to get better treatment.  The launch of this effort is a report, A Call to Revolutionize Chronic Pain Care in America, by a private NYC group, the Mayday Fund.  According to the report, chronic pain is a greater burden on the health care system “than that of diabetes, heart disease and cancer combined.”

The trip was great.  We love Manhattan.  We even found a newly reopened gluten-free Greek restaurant, Gus’s, on Bleeker St just a block east of 6th Ave.  The food is good and the seats are more comfortable than our old standby for GF, Rissotteria, which is a few blocks up Bleeker toward 7th.

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Posted in Chronic Pain, FTD, Medical System, Physicians, Treatment | 2 Comments »

Want to Really Improve Health Care?

2009-11-03 by

Via Instapundit:  The post at fightaging.org, The Doom that Fell Upon Medical Progress in the US, only touches upon the tip of the iceberg of the needless human suffering caused by the exploitation of patients — the consumers — by “our” medical system.  In the underlying post they cite, American Healthcare Facialism, Prof.  DiLorenzo from the Ludwig von Mises Institute captures more of the problem, from a political and bureaucratic perspective, caused by state interference.

The problem is older and more deeply rooted in human nature.  G. B. Shaw observed in 1902:

No doctor dare accuse another of malpractice. … But the effect of this state of things is to make the medical profession a conspiracy to hide its own shortcomings.  No doubt the same may be said of all professions.  They are all conspiracies against the laity and I do not suggest that the medical conspiracy is either better or worse … but it may be less suspect.

The medical community’s monopoly is based on technical knowledge that was wholly their property.  The laity was largely prevented from acquiring this knowledge or even the means of acquiring it.  The internet has profoundly altered that balance of knowledge.  Motivated “patients”, i.e., consumers, now frequently know more about their diseases than most of the doctors they encounter, much less the nurses or others of the doctor-lite crowd.  The doctor is no longer the sole, literate, non-religious man in the village.

We have granted the medical profession, and all the other allied “professions” and medical institutions, a monopoly over our medical care.  It has gone so far as to prevent us from taking medicines that we need without their permission.  That monopoly is no longer justified by the balance of knowledge — and hence, power — that now exists.

Prof. DiLorenzo points out the influence states have in inhibiting competition.  Again, using doctors as a conspicuous example:

Physicians have long enjoyed a degree of monopoly power derived from state legislatures that delegate to the American Medical Association (the doctors’ union) the “right” to limit entry into medical schools through accreditation. Only graduates of accredited (by the AMA) medical schools are licensed to practice medicine. [Not quite true.  Graduates from foreign schools can practice after passing a harder test than is required of AMA school graduates.]  The AMA has used these state-granted privileges to limit both the number of medical schools and the number of medical-school graduates. The reduced supply of doctors drives up the price of medical care and the income of AMA members.

The physicians produce an artificial shortage of doctors for the express purpose of providing full, highly paid employment for all physicians, even the most incompetent.  Implicitly, they are telling us — the people, the consumers — that their prosperity and job security are more important than our lives and health.  Like the military’s up-or-out policies — if you are passed over for promotion a certain number of times, then you are discharged — we need to graduate so many doctors that the incompetent cannot stay in practice.  And we need to demand the transparency of results — medical outcomes — identified by individual physician, to know which doctors are good and which are not.

The word “patient” indicates that, traditionally, we are to be passive, medically, in the care the doctor provides.  This is exactly what must change if we are to rectify the priorities of the health care system.

We must return to first principles, those upon which our republic was founded.  We must be clear in our use of words.  This is not a matter of Democrat/blue/left/progressive vs. Republican/red/right/conservative.  This has nothing to do with the political parties of the twentieth or twenty-first centuries or on which side of the hall the French factions congregated in the eighteenth.  These are all false, one-dimensional scales that mislead rather than enlighten.

This is a matter of liberty vs. tyranny.  Tyranny has its own eternal allure.  ” I am weak, I want someone to take care of me, make decisions for me.”  This motivates children, the weak and the slavish.  At the other end of the true scale is Liberty.  “I am strong, I can take care of myself and my loved ones, I will decide what is in my own best interests.”  These attitudes motivate the strong and the free.

In the true meaning of the term, Liberty is what we strive for.  The only progress that we can make is toward greater individual strength and enlightenment to support greater liberty.  Heading back from Liberty towards Tyranny is regression.  As usual, the terms have been stood on their heads in the current national health-care-reform debate:  a Liberal means one who wants the government to have a greater and more tyrannical role, and a Progressive is one who sees movement towards Tyranny as “progress.”  a Progressive is actually a Regressive, a Liberal, a wannabe Tyrant.

We must privatize the health care system, break up the monopolies, encourage competition, demand transparency of outcomes, and take back our power as free adults and as consumers.  We do have the power.  It is up to us to use it.

India is one indicator of the possibilities brought about by an abundance of doctors and freer access to medicine.

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Posted in Health care issues, Medical System, Politics | Leave a Comment »

Looking for My Lost Bass Clef, on Celtic Moon

2009-10-28 by

I love music.  I’ve played the piano since I was seven.  The last time I tried to play, I discovered that I wasn’t able to read the bass clef on a sheet of music.  Also, my left hand had lost its musical memory for the bass clef.  I visualized playing the saxophone, which is treble clef, and my left hand remembered the notes.

I could not remember the most fundamental things:  notes. Like almost everyone who learns to play the piano when they are young, your piano teacher encourages you to make up funny lines to remember the name of each key and letters on the clef.  As I sat in front of my piano, my mind was blank.  I longed for those phrases I tossed aside long ago.  I opened the lid of my piano bench where I use to store trinkets, such as an an apple green spiral notebook with crazy white notes scattered on the cover, that contained my first six months of music theory.  Then, I remembered that I had put what was left of my beginning piano music in a file drawer.  Three rows of steel cabinets were downstairs in the basement.  There was no way I would be able to navigate the stairs.

When I was a girl, my teacher use to give me plastic busts of composers each year.  My favorite bust was given to me by my mother.  It was as larger bust of a handsome young Chopin with blue eyes and cornflower blond hair.  Once, when I was eight, I was having a difficult time playing a piece and I took the bust outside, placed in on the grass and danced around it.  I was wearing a sunny yellow dress then, in Texas.  But as I sat there at the piano that day, I pictured myself going outside in my house dress and dancing a jig with the crazy old Turkish woman who lived across the street.  No inspiration there.  No bass clef.

Now as I sit here typing, those childhood phrases are flooding my mind.  Every Good Boy Does Fine Always, FACE Good Boys, Bad Girls Eat Candy All Fall, All Funny Black Geese Eat.  My piano is in storage now.  But, down the hall in a small room there sits my childhood piano, terribly out of tune, its legs gnawed from a crazy dog and sticky keys from a gaggle of young nieces trying to play Heart and Soul.  Maybe it’s time two old friends got together.  Maybe I can find my lost bass clef.

Right now I’m listening to Live365 radio on the internet.  One of my favorite stations is Celtic Moon.  If you are a fan of Loreena McKennitt‘s style of music, then you should tune into this station.

What I love about Live365 radio, is they provide so many small radio stations that play different types of music.  My brother listens to it when he gets home from work.  He is also a fan of Celtic music.  But, his tastes have always been more eclectic.  I will never forget the timeless melody of Dead Skunk in the Middle of the Road which he played over and over again on his turntable.  He is the only person I know that has the entire musical collection of Focus, a yodeling foreign rock band founded by a classically trained flautist.

It’s time for me to go to an on-line support group meeting, so goodbye for now.

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Posted in FTD, Living with Illness, Music | Leave a Comment »

FTD Brain Neuron Growth as well as Death?

2009-10-26 by

I came across this in an article in the NY Times about FTD, and the unexpected effect of the brain’s rewiring itself to adapt to the death of frontotemporal neurons:

“In 2000, she suddenly had a little trouble finding words,” her husband said. “Although she was gifted in mathematics, she could no longer add single digit numbers. She was aware of what was happening to her. She would stamp her foot in frustration.”

By then, the circuits in Dr. Adams’s brain had reorganized. Her left frontal language areas showed atrophy. Meanwhile, areas in the back of her brain on the right side, devoted to visual and spatial processing, appeared to have thickened.

When artists suffer damage to the right posterior brain, they lose the ability to be creative, Dr. Miller said. Dr. Adams’s story is the opposite. Her case and others suggest that artists in general exhibit more right posterior brain dominance. In a healthy brain, these areas help integrate multisensory perception. Colors, sounds, touch and space are intertwined in novel ways. But these posterior regions are usually inhibited by the dominant frontal cortex, he said. When they are released, creativity emerges.

Maybe this means that I may have some areas grow and increase in ability, while the other areas are deteriorating.

Does anyone out there have any experience with this phenomenon?

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The Beginning of the End

2009-10-25 by

I am dying.  This is a simple statement of fact.  Mature people should be able to accept this at face value, and react accordingly.  So one would think.  Instead one gets the queerest reactions.  Most deny the obvious, and say — quite without evidence or justification — that I’ll live at least ten years or more.  How convenient for them, not to have to confront anything real or unpleasant in the immediate future.

My husband set up this blog for me.  I’ll try to learn how to work it.  It will be difficult.  The interface between my spirit and my body is slowly going out.  As my brain is dying, there are episodes of “static” or storms of uncontrolled thoughts, that I have to fight hard to control.  It takes a lot of energy, just to appear normal.  I am not.  My disease is mostly invisible.  Recently, I have started to add stuttering sounds, at the end of my words, like da-da da da, or pa-pa-pa-pa-pa… for minutes on end.  Very embarrassing.   And very uncomfortable for those who want to believe the convenient lie that I’ll be around for the foreseeable future.

This won’t just be about dying.  I’m also writing a novel and consulting with an incipient start-up company to develop automated medical diagnosis software for the web.  I have opinions on politics, life, and how to improve the medical system.  I am a spiritual being, and so I don’t always have the human perspective of the world.  The spiritual view is usually quite different.   Sometimes poetry blurts out, unbidden, silly sometimes.

Selchietracker has written this to prime my blogging pump.   Channeling me.

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