May 2011, at least the first two weeks, have been filled with Federal agencies announcing plans to stem the “Epidemic of Prescription Pain Medication.”  FDA has released information for consumers of long-lasting pain medication and SAMHSA has announced an effort to approach the issue of pain medication use, misuse and abuse with a comprehensive program over the next five years. 

As a person who has periods of chronic pain, I wonder where this leaves various Americans who–rightfully–wish to have a voice in addressing this problem. Persons with pain need access to pain management without undue hassle and persons with acute pain (e.g. from an accident or injury or dental surgery) need to be treated appropriately for acute pain. Acute pain treatment is important both to reduce the progression to chronic pain, but also to avoid the potential for acute pain, which could have been managed, to become, for the pain patients, the source of prescription pain medicine abuse, misuse or addiction.  Furthermore, more pain patients means more people who become the unwitting suppliers of diverted pain medications.  The following is my personal story. But this blog will be revisited as this issue develops.

Pain sufferers–you will relate to this post: it is about pain so terrible that every thought you have makes you feel like vomiting. The sound of the wind in the trees, through a window, is excruciating. Every image that comes to mind is so sickening you want to die. You think–to the extent that you can think at all–about how best to kill yourself and make the least possible mess in the house.

Pain is a terrible thing and so misunderstood by those who have never really experienced it or have only experienced acute pain. We pain suffers are big liars. We tell our loved ones that it is not so bad, because we can’t stand the thought of being forced out of our beds to go to the hospital. The idea of the trip there is beyond acceptable. We would rather lie in the dark and suffer than get our heads around the notion that someone somewhere–such as a doctor at a hospital–could help us live through the next few hours.

Oh, yes, we have medications at home. We take them all–risking serious consequences–in an attempt to make the pain subside. We nibble on saltines because the medicine is supposed to be taken with food, but all food is so nauseating to our minds that we can hardly bear the nibbling we must do on these three crackers we have set out as our goal.

People stop in, such as our children, to give us some interesting bit of news, like my daughter last night who was heading out with friends to celebrate her 16th birthday, and they see us with our head literally in our hands, wrapped in blindfolds left over from airline flights where they give out the eyecovers so you can sleep on the flight. Pain suffers save these items, because you need at least two or three to completely block out all the light, even at night, that is somehow shining through the darkness and making your head throb that much worse.

Headaches are not the only kind of chronic pain, but they are one of the kinds that I get. As a pain sufferer, however, I do have other kinds of pain. I even have pain preferences. I would much rather have the unexplained pain that I sometimes get in my teeth–all of them– than a headache. Where does this mouth pain come from? It is a mystery. I do not grind my teeth, I have never had a cavity. My teeth are in perfect condition, but they can suddenly become the source of amazing pain that requires opioid based therapeutics. Or there is the creepy, crawly, pain that I sometimes get in my legs. No amount of rubbing or wringing can make the pain go away. I lay there longing for cramps, because they are preferable to the horror of the creepy crawly pain.

Why this blog–well, other than venting, to attempt to describe for you, the non-pain sufferer, how we feel. To help you understand why we must be allowed to have pain medications in our homes without the fear that others will steal it (or “borrow” it). This misuse of our much needed medicine gives us a bad name, it gets us strange looks from pharmacists–who are otherwise pretty nice people but who look and scrutinize those of us who regularly obtain controlled substances as though we are addicts. STOP looking at us like this. We are merely trying to be prepared for the next episode. Furthermore, we never know when it will come. True, some of us have triggers. Frankly, I feel sorry for those people because they must bear the added burden of knowing that they sometimes make choices, like participating in a toast at a party (yes, just one sip of alcohol) that will later result in their secret desire to die.

If you are the loved one of someone with chronic pain, God bless you. Thank you for checking on us every twenty minutes–quietly slipping into the dark room to see if we need anything, to check if the pain has subsided at all and to sigh when you notice that we have finally fallen into sleep.

Entry filed under: health, pain. Tags: controlled substance, headache, health, medication, migraine, opioids, pain, pharmacist, suicide.

I have been sun-burned on shelling trips by Captain Bob and searched for hours at a time for the perfect cone shell (never yet to have found it). Now I am sick that not only is there a very low probability that I will ever find a perfect cone shell (unless I go immediately and get a freshly dead one) but that cone shells and olives and even sand flies are not going to live through the devastation that faces the Gulf now and for the far distant future.

I am not suggesting that it is not a noble effort to save the bird life, but for every bird we scrub with vegetable oil and wash with dish soap and every bird that never becomes mired in the slick muck of tar from this BP spill, there are many other birds that are going to have to move away from the Gulf or starve as the shellfish that they depend on are surely going to die.

I remember nights walking along the beach, just after sunset but while there was still enough light to see, and watching the live olive shells appear. They slide along the surface of the sand leaving a not-disgusting trail of slime and at some point, that only they can know, they dig down to spend another night and day beneath the sand until it is twilight again. These animals cannot survive if they emerge from their shallow homes and find nothing to eat but a thick layer of tar scum. The sand-dollars will lose their fine sticky hairs and die as well, providing so briefly an abundance of sand dollars to be collected on the shores by vacationers who may come to the beaches, but have already been warned not to go into the water.

Once as a little girl, I lived in Bay St. Louis Mississippi–just steps from the Gulf on the beautiful little bay of this tiny town. I remember when I moved there that all anyone could talk about was Hurricane Camille—a event that had occurred in 1969, nearly ten years past!  They talked about how the little town would never be the same. How the devastation had destroyed families and torn the fabric of their very lives. I thought they were nuts. They lived in Paradise, as far as I was concerned (after all I had moved there from Piedmont, SC a hot, miserable place) and I felt they should be grateful for the abundant oysters to be plucked from the sea wall at their feet, the craps that could be caught with chicken necks off the docks, the beauty of the aging posts that was all that remained of some docks torn away by Camille. But they didn’t see it that way. Now, finally, I understand.

There were several stories she was intrigued by, such as how we would go out on Saturdays and walk along the roads picking up soda bottles so we could redeem them for their deposit and buy candy with the precious dimes and nickles we were handed by the man behind the counter, there was the story about the time we were living on a farm, playing with lambs on that particular day, and a man who worked cutting down trees for the electric company (to install power lines) came up to us in a daze holding his sawed off arm. There was the time that I was almost kidnapped out of my Dad’s car in East St. Louis because in 1968 it was considered un-neighborly to lock your car doors–but in East St. Louis during those days it only represented an opportunity to snatch a child.

Later I peeked onto her computer and looked up the file in her “recent documents” (don’t tell) and she had written the intro and talked about my childhood with envy….those were her words. All the excitement of our world has been transformed in their time into a place that is locked-down–at school, at home, and at play. No more strolls along the roads looking for coke bottles.

We often talk about kids today with despair and wonder why they don’t get outside and play or get off their cell phones, or stop texting, or get out from in front of the TV. But the questions is would we allow it? And if we did allow it, what would be the risk? What would other parents think of us, particularly if something bad were to happen? How could we live with ourselves if the worst were to happen?

Kids today, are in fact, great. They just have a different life and a different future. We need to remind them–and ourselves– of that and also go easy on telling them how much we envy THEIR childhoods, filled with goods and services and smothering love. They have missed out and they know it. We should all face facts.

Audrey

Perhaps this information will help steady the wobbly stool of health care. Although there is plenty of discussion about health care access and quality, the fact is health care is a three-legged, not a two legged, stool. Access and quality must be steadied by value in health care.

Without value, people don’t know what they are buying and/or they fail to understand the relative value of health care services like immunizations, a visit to the doctor or a trip to the emergency room. Today we released the results of a new study on how Americans value health care. The study reports and additional information can be found at our website www.healthvaluestudy.com.

We did this study because we were curious about how Americans value health care services. Our findings include some surprises in areas including – mental health value – preventive health services – nutrition and – access Last week, GE announced a six billion (yes, with a “B”) dollar program to improve health care. GE chairman and CEO Jeff Immelt was quoted as saying, “Health care is an important industry that is challenged by rising costs, inequality of access and persistent quality issues.”

Again, the discussion is around access and quality with no mention of value. When you are preparing to spend six billion dollars, one would think you would be somewhat concerned about value! We want to be that ‘someone’ talking about value. We hope you will join the dialogue.

Over the next few days we will hear more on the facts about how the Swine Flu made it across our borders from Mexico as CDC goes into full swing on contact tracing for the US cases. Despite the scariness of the current situation, and the implications for public health, much of what was written in March still holds true. As I wrote then, I began my adventures with pandemics when I started working with the AIDS program at NIH in 1985. Since that time I have remained concerned Pandemics. Partly, I attribute this worry to the fact that the Director of the newly formed AIDS Program at the time was the former Director of Pandemic Flu preparedness for the NIAID, Dr. John LaMontagne.

However, there is also the general feeling that infectious diseases are emerging at alarming rates. During the early days of AIDS, even, it seemed that every other week I was learning about a new potential pandemic threat. There was, and is, Ebola, SARS, Bird Flu (or Avian Flu), Swine Flu and even the ancient Plague could not be ruled out as a possibility for re-visiting our global population, either in their original forms or as mutants of the original viruses.

When I wrote in March an article had just been released which questioned risk of Pandemics. An article in the Journal of Emerging Infectious Diseases in February suggested that it was strep, and not the Spanish Flu, that killed millions during the 1918 Global Flu Pandemic. It suggested that had antibiotics against strep been available, many fewer millions of people would have suffered and died.

Also in March the Washington Post had an interesting article by Philip Alcabes entitled ‘5 Myths about Pandemic Panic.‘ Alcabes writes of the reality of the potential for another major pandemic, including questioning the usefulness of looking to the past for ideas about how to prevent future pandemics. Specifically the 5 myths he mentioned were:

1.      Infectious diseases are spreading faster than ever

2.      to learn to prevent a pandemic, look to the past

3.      We should brace ourselves for another Spanish Flu

4.      The annual flu season is nothing compared to a pandemic and

5.      There’s no such thing as being too prepared.

On this last point the author actually pointed to evidence from the last Swine Flu outbreak, he wrote

“Actually, we run the risk of doing more harm than good by overreacting to the threat of a pandemic. In 1976, swine flu, a strain of influenza similar to the one from 1918, was diagnosed in a small number of soldiers at Fort Dix, N.J., one of whom died. That prompted medical experts to warn that the United States faced a crisis reminiscent of the Spanish flu. President Gerald R. Ford authorized a mass inoculation program, and 45 million Americans — more than 20 percent of the population — were vaccinated.”

What I think I enjoyed most about his article, was the discussion of the fifth of the ‘myths’ in which he postulates that it is a myth to assume that ‘There is not such thing as being too prepared.’ He believes that we are spending too many resources on useless preparations.

In my last blog, I responded by writing, “Given the need to re-evaluate every penny being spent on health care and health care prevention efforts; perhaps he is on to something.” Perhaps I will have to eat those words—or worse, cough them up.

Pain is a terrible thing and so misunderstood by those who have never really experienced it or have only experienced acute pain. We pain suffers are big liars. We tell our loved ones that it is not so bad, because we can’t stand the thought of being forced out of our beds to go to the hospital. The idea of the trip there is beyond acceptable. We would rather lie in the dark and suffer than get our heads around the notion that someone somewhere–such as a doctor at a hospital–could help us live through the next few hours.

Oh, yes, we have medications at home. We take them all–risking serious consequences–in an attempt to make the pain subside. We nibble on saltines because the medicine is supposed to be taken with food, but all food is so nauseating to our minds that we can hardly bear the nibbling we must do on these three crackers we have set out as our goal.

People stop in, such as our children, to give us some interesting bit of news, like my daughter last night who was heading out with friends to celebrate her 16th birthday, and they see us with our head literally in our hands, wrapped in blindfolds left over from airline flights where they give out the eyecovers so you can sleep on the flight. Pain suffers save these items, because you need at least two or three to completely block out all the light, even at night, that is somehow shining through the darkness and making your head throb that much worse.

Headaches are not the only kind of chronic pain, but they are one of the kinds that I get. As a pain sufferer, however, I do have other kinds of pain. I even have pain preferences. I would much rather have the unexplained pain that I sometimes get in my teeth–all of them– than a headache. Where does this mouth pain come from? It is a mystery. I do not grind my teeth, I have never had a cavity. My teeth are in perfect condition, but they can suddenly become the source of amazing pain that requires opioid based therapeutics. Or there is the creepy, crawly, pain that I sometimes get in my legs. No amount of rubbing or wringing can make the pain go away. I lay there longing for cramps, because they are preferable to the horror of the creepy crawly pain.

Why this blog–well, other than venting, to attempt to describe for you, the non-pain sufferer, how we feel. To help you understand why we must be allowed to have pain medications in our homes without the fear that others will steal it (or “borrow” it). This mis-use of our much needed medicine gives us a bad name, it gets us strange looks from pharmacists–who are otherwise pretty nice people but who look and scrutinize those of us who regularly obtain controlled substances like we are some kind of addicts. STOP looking at us like this. We are merely trying to be prepared for the next episode. Furthermore, we never know when it will come. True, some of us have triggers. Frankly, I feel sorry for those people because they must bear the added burden of knowing that they sometimes make choices, like participating in a toast at a party (yes, just one sip of alcohol) that will later result in their secret desire to die.

If you are the loved one of someone with chronic pain, God bless you. Thank you for checking on us every twenty minutes–quietly slipping into the dark room to see if we need anything, to check if the pain has subsided at all and to sigh when you notice that we have finally fallen into sleep. God bless you all.

With a new FDA commissioner announced, but not yet confirmed—Dr. Margaret Hamburg—and with a deputy also picked out, there are some, including Dan Mitchell of the Daily Bread, a trade pub on the business of food, who believe that the choice of Hamburg actually signals the Administration’s interest in a split of the agency into two separate agencies; one for drugs and one for food safety. I could not disagree more. In his article “New FDA Head: Commissioner of Food?” Mitchell actually describes Hamburg’s experience as a nod toward a split of the organization. I think that Mitchell has not looked far enough into Dr. Hamburg’s background if he thinks that she is only qualified to be the Commissioner of Food.

Peggy was Dr. Fauci’s, Director of the NIAID of the NIH, special assistant for AIDS during the early years of the HIV epidemic. She had many occasions and many duties involved in the fight toward drug discovery, and review of HIV drugs, during these early years. She was instrumental in helping the Institute formulate its plans for HIV drug development grants and contracts and in the development of the overall DHHS response to the HIV epidemic. She was even the Assistant Secretary of the DHHS for planning and evaluation with responsibility over both the NIH and the FDA’s planning and evaluation of programs, not just of HIV, but all drug discovery efforts. Dr. Hamburg is more than ready to be commissioner of the entire FDA and I personally believe there is no reason to split the agency. What they lack is leadership, and they are about to get that. Furthermore, my contacts around town say that such a proposal has no hope of making it through Congress.

Sadly, it appears that Natasha Richardson’s life will be taken by a relatively minor injury she suffered during a beginner skiing lesson in Canada Monday, March 16th. Today many news outlets are reporting that her family plans to remove her from life support or that that decision has already been executed.

Many of the celebrity and other bloggers are following the story very closely and it is certain that updates will continue throughout the day and evening. One blogger writes of the ‘talk and die’ syndrome that may be the ultimate diagnosis of Richardson’s injury. This type of injury is usually associated with an epidural hemorrhage in the brain, or bleeding between the skull and brain.

Interestingly, despite how unfortunate, traumatic brain injury has actually been a growing problem for the United States over the past decade as a result of our involvement in the Iraq and other armed conflicts. On their website the Veteran’s Administration provides information for patients and families on the common symptoms including the fact that the brain injured individual may appear normal but indicates they ‘just don’t feel like myself.’

The Congress has become interested in brain injury for this very reason and has before its body legislation to address this silent killer. Recently the House of Representatives passed a resolution to increase awareness about this injury that affects 1.4 million American each year.

Additional information on brain injury can be found at the website of the Brain Injury Association.  The Brain Injury Association also provides information on how commonly these injuries affect the non-soldier, injuring average America children and adults.