September 2011

The Heart of Healthcare that Works: Know Your Personal Worldview Of Health

Published on September 26, 2011

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Healthcare Matters

“All the evidence that we have indicates that it is reasonable to assume in practically every human being, and certainly in almost every newborn baby, that there is an active will toward health, an impulse towards growth, or towards the actualization.”
– Abraham Maslow

Google “healthcare” and it returns 99,900,000 results. Healthcare seems to be a vast, complex, inconsistent, and perhaps unavailable or expensive system ‒ sometimes seemingly devoid of personal connection. At a minimum, it can be confusing to find what will work for you. Really work for you, on all levels.

Here’s the good news: when you define healthcare for yourself, the path towards growth and actualization Maslow speaks of becomes easier to find and follow. Forget what healthcare is for your best friend, your family, or a generic patient with similar symptoms you read about online. Forget about some list in your health insurance policy. That’s just a list based on contractual relationships, which may or may not relate to what works best for you.

Healthcare is deeply, deeply personal. Only you know what healthcare is for you. It depends on your values, your beliefs, your worldview. And, those can change over time.

Finding healthcare that works for you is a bit like going on a quest – an adventurous exploration. You have to know what you’re seeking, the signposts to know you’re on the right path, and some friendly support along the way (wisdom, people, or places) helps too.

To narrow the vast landscape of healthcare to what will work for you, begin by understanding, or perhaps taking this opportunity to create, your personal worldview of health, healing, and well-being. If your choice of physicians, practices and medicines doesn’t resonate with your worldview, there will be discord. Discord, at a minimum, makes communication with practitioners challenging. In some medical sciences this discord would be believed to have a negative impact on healing at a very deep level. Knowing your worldview gives you a foundation for harmonious choices.

To explore your worldview, some questions to ask yourself include:

• Do you believe health is based on primarily how each part of the physical body separately functions?
• Do you believe the mind can influence the physical body?
• Do you believe there is an interrelationship between mind, body and spirit; a holistic view of your being?
• Do you believe the body is basically like a machine (also identified as a Newtonian view of the world); and should be treated in a mechanical nature?
• Do you believe your choices – from the food you eat, to your relationships (including work), to the surroundings you live in – influence your well-being?
• Do you believe in a “one solution fits most” medicine; or that each person is unique and therefore may require varying paths to well-being, even if the diagnosis or symptoms are similar?
• Do you believe in treating the illness or the person with an illness?
• Do you believe in focusing on the disease (diagnosis, symptoms); or on health and well-being?
• Do you believe in healing, curing, pacifying symptoms, or something else? Or all of those in different situations?
• Do you generally believe in an interconnected world? Or a world where all beings and things are separate?

Answering these types of questions will significantly narrow the landscape of your quest – narrow down what will work for you. No one can answer these for you. You may want to write a personal worldview statement to crystallize your worldview.

Equipped with your personal worldview of health you can then move on to the next steps in your quest:

• Identify what health, well-being and healing mean to you
• Know what qualities of care are important to you
• Understand what “medicines” resonate with you

In the coming articles we’ll delve into each of those areas with more questions to help you find healthcare that works for you.

Navigating Invisible Illness in the Age of Modern Medicine

by Chandler Marrs, PhD

Published on September 26, 2011

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Much has been about said about empowering and educating patients to be partners in the healthcare dance. From the e-patient and e-health revolutions through the piles of research showing more engaged patients have better outcomes, all seem to point a more active role and increased responsibility for the patient in his or her own care. But how does that work when the illness is not clearly defined, is not easily diagnosed or for which effective treatments are limited? What does it mean to be an empowered patient with an invisible illness?

This is the question that many women face on a regular basis. Indeed, for a number of predominantly female disorders, whether hormonally modulated or not, there are often many years before the symptoms are addressed as real and not figments of the female imagination. Chronic fatigue and fibromyalgia are two such examples, but so are endometriosis and an array of other perhaps more subtle hormone conditions.

During those years before modern medicine and the research community recognize the reality that define a particular disease process; during the years when women are prescribed psychiatric meds for non psychiatric conditions; during the years when pain medications with diverse side-effect profiles blur the line between the original disease and the one that is induced pharmacologically; during those years, how does one become the e-patient, the e-woman, without becoming a physician herself?

Really, we want to know.
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Women’s Hormones: An Intellectual and Ethical Cul de Sac

by Chandler Marrs, PhD

Published on September 21, 2011

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Menopause is barreling down with a ferocity that is difficult to ignore. Like many women my age, I’ve had my share of health challenges and, until recently, blindly trusted the pharmaceutical industry to fix all that ailed me. Health by chemistry was a great thing; oral contraceptives, a fabulous invention, allergy meds – ditto, pain killers – wonderful, and on, and on. Take a pill and feel better, isn’t that what we all want? But I, like so many women, have lost faith in pharmaceuticals. It’s not because the science isn’t cool, it is, in every area of pharmacology, except women’s hormone therapies. Here, intellectual curiosity and innovation have been replaced by status quo. Little has changed in this area of hormones and health in 60 years.

Hormones, Hormones, Everywhere and No Innovation in Sight

Since their inception, hormone replacement therapies (HRT) and oral contraceptives have dominated women’s health, immediately moving from seemingly narrow applications when first introduced to the almost mythical status as cure-alls for any female and many general health ailments. The history of both these pills is strikingly inglorious and utterly dumbfounding. Just on general principle, why would anyone believe any medication could be so widely beneficial for so many apparently disparate conditions? It is physiologically impossible.

For HRT especially, if one believes the marketing, the pills provide a veritable fountain of youth. Where is the science? But believe we did, and generations of women may now be paying the consequences.

From the very first estrogens synthesized and marketed to women everywhere (diethylstilbestrol- DES), through today’s HRTs and OCs, profit appears to override health concerns. Even in the 1930’s and 1940s before these drugs came to market, the carcinogenic risks were well known, and yet, they garnered FDA approval and were sold to millions, upon millions of women.

Synthetic Hormones

I have personal experience only with the often ignored side effects of oral contraceptives, as I have yet to reach the age of menopause. In my 20s, while on the presumable high estrogen dose of oral contraceptives that were common then, I had intense bouts of vertigo that would develop even when lying down and ever increasing blood pressure. After years of expensive testing could find no neurological cause for the vertigo and after repeated prescriptions to lower my blood pressure, I stopped taking the pill. I had enough. The vertigo stopped fairly soon thereafter and the blood pressure returned to normal. Over those several years, there was not a single physician that suggested I stop taking the pill, indeed I was prescribed more and more meds to counter the apparently unknown side effects of oral contraceptives and it was recommended I see a shrink because the vertigo had to be psychosomatic.

I look back at that time and I wonder how many other women suffered similar circumstances. What is this propensity to prescribe and continue prescribing medications in the face of apparent ill effects? Why are we ignoring, even at the patient level, the possibility that some meds may not work for some women (or men). The statistics bear this out, but there seems to be a natural inclination to minimize these risks. This is compounded of course, by intense marketing.

As I approach this menopausal stage, I again will be faced with yet another hormone-issue for which the choices are bad and worse. We know from the Women’s Health Initiative (WHI) in 2002, that HRT is not the panacea it was marketed to be and the risks associated with this medication are not benign.

Over a one year period, for every 10,000 women taking and estrogen plus progestin, the risk of developing these conditions increases by:

• Heart disease: 7 additional cases
• Breast cancer: 8 additional cases
• Stroke: 8 additional cases
• Blood clots: 18 additional cases

For estrogen only:

• Stroke: 12 additional cases
• Blood Clots: 6 additional cases

Consider however, the millions of women who will take or have taken HRT for years. As of 2010, over eight million women in the US alone take HRT, and will likely do so for at least a couple years. In this light, the increased risk of disease looks a lot scarier.

• Heart disease: 5600 new cases per year; 28,000 in five years
• Breast cancer: 6,400 new cases per year; 32,000 in five years
• Stroke: 6,400 new cases per year; 32,000 in five years
• Blood clots: 14,400 new cases per year; 72,000 in five years

When the WHI was published, some 17 million women in the US had been taking HRT for many, many years, even decades. That’s 13,600 new cases of breast cancer per year, 68,000 in five years! Despite these data, and the thousands of lawsuits that followed, HRT is still one of the most frequently prescribed medications worldwide. I think we can do better.

Statistics from the Mayo Clinic

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What do male rodents and human females have in common?

by Chandler Marrs, PhD

Published on September 14, 2011

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Drug Development Conducted mostly in Male Rodents

According to most researchers, male rodents share enough in common with human females to extrapolate findings about the mechanisms and treatment of pain. A review of research in the journal Pain (2007) found that over a ten year period, fully 79% of all animal studies published, performed drug testing on male animals only. Only 8% of the published research included female animals and a mere 4% investigated the possible differences between males and females.

The preponderance of male rodents in animal research is in stark contrast to the higher prevalence of women suffering from pain related disorders. I find it difficult to justify using male rodents for drug research that will be translated to the female population, especially when the estrus and menstrual cycles influence so many pharmacokinetic variables.

What do you think? How do the numbers stack up in other areas of research?

Greenspan et al. Pain. 2007 Nov;132 Suppl 1:S26-45. Epub 2007 Oct 25.
To read the full article click here.

Every Man Knows a Woman with Hormones

by Chandler Marrs, PhD

Published on September 14, 2011

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And we all have hormones. Those wonderfully mysterious chemicals circulating and cycling with the regularity and rapidity that makes one’s head spin, female hormones are at once the bane and the joy of man’s existence. Our hormones are what make us find you attractive, laugh at your jokes, date you, sleep with you and bear your children. Our hormones can also turn us into stark, raving lunatics at seemingly benign comments. Most men know and understand this, at least intuitively. You are prepared for the ‘wrath of raging hormones’ if not from direct experience with your mothers, sisters or girlfriends, then from the many locker room and sitcom epithets ever present in modern culture.

What most men (and many women) are not prepared for, and I’d venture don’t understand, is the very real chemistry changes behind the wrath. Much of this goes far beyond just mood changes, often eliciting a bevy of symptoms and disease processes that we’re only now beginning to understand.

In many ways, hormones are just like every other chemical circulating in our bodies, regulating this system or that, entirely responsible for certain functions, secondary and tertiary players in others. Men have the same hormones as women, just in different concentrations. And hormones cycle in men, but not so radically and regularly. What is different between ‘men’s hormones’ and ‘women’s hormones’ is not the hormones themselves, but the systems and structures on which they operate and the reproductive functions that ensue.

To state the obvious, women have ovaries and a uterus. Those structures, along with the brain form the foundation of a beautifully orchestrated and incredibly complex chemical feedback system that not only controls reproduction, but influences just about every aspect of our lives. Estradiol and progesterone concentrations increase several fold across an average cycle, preparing the uterus for a possible pregnancy. In the absence of pregnancy, hormone levels plummet and the lining of uterus, the endometrium sheds. The all-too-familiar mood changes and pain commence.

As a man viewing this process from the outside, it is difficult to appreciate the magnitude of hormone changes affecting the women in your life. When hormones act on the brain or in the body, they do so in much the same manner as many common drugs. In terms of chemistry, menstrual cycle hormone changes are very similar to a drug addiction/withdrawal pattern with increasing dosages of stimulants (like amphetamines) during the first two weeks, a combo pack of sedatives (like Valium or alcohol) plus a few stimulants during the second two weeks, followed by cold turkey withdrawal. Rinse and repeat, over and over again, approximately 450 times during the course of her lifetime. Pregnancy and postpartum follow the same pattern only the dosage of hormones, the duration of exposure and the magnitude of the withdrawal are increased exponentially. The veritable cocktail of hormones that make these functions possible is breathtaking.

What happens when one or more of these chemical messengers gets a little out of sync and the system become dysregulated, as is inevitable in any system that cycles so frequently? Or what happens when an illness or disease, maybe not caused by hormones, develops in the context of this ever fluctuating female chemistry? You get a bit of chaos (think butterflies, not randomness).

As a man, who has women in his life, you have two choices, ignore and avoid the chaos and hope there are no storms on the horizon, or embrace the chaos and find ways to anticipate and alleviate the pain. Many choose the former, including much of medical science. This is the avoidable ignorance, I wrote about last week. I’d like to think the men who love us, choose the latter. Certainly, the men who shared their wives’ and daughters’ stories recognize the need to investigate and develop better treatments for women. They may not understand fully the complexity of women’s hormones, but they understand the suffering, sense that symptoms are being ignored and want nothing more than to make it all better.

Living and Coping with My Wife’s Fibromyalgia

by Hormone Stories

Published on September 13, 2011

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Fibromyalgia

I’m a relatively healthy guy. Most of the aches and pains I experience are from doing stupid things in my youth, that are now showing up as I get older.

My wife Bonnie and I just celebrated our 21st wedding anniversary. To look at her you’d think, first, she doesn’t look her age (52) and second, she looks positively healthy. In fact for most of our lives together we’ve been very outgoing and outdoorsy people. Hiking and camping were regular activities along with swimming and other sports. But within the last 5 years things changed quite a bit. She was no longer able to do long hikes when we went camping. During our travels around the country visiting cities that we love, she couldn’t handle walking around and sight-seeing for very long. Then she began to come home from work, exhausted and would say that she needed to take a short nap, which began to turn into naps that lasted until the next morning, or if she didn’t have to work the following day, a two day nap.

After many doctor visits and testing by specialists and quite a few mis-diagnoses including Irritable Bowel Syndrome, possible Crohn’s Disease, maybe Lupus maybe not, it was confirmed she has fibromyalgia. So now we were at least able to put a name to the symptoms and problems that she was having and that had changed her life so dramatically.

And on top of all this, she has started menopause, so she now has a double whammy and additional symptoms to deal with on a daily basis. Hot flashes and constant pain don’t go very well together.

It’s not an easy condition to deal with and I know it’s horrible for her, and sometimes all you can do is just listen. Even the myriad of medications she is on are only able to ease her symptoms, but they don’t effectively fix anything and we don’t know if they ever will. So for now she has good days and bad days, and I had to realize that I can’t fix her, all I can do is love her and try to comfort her as best I can and try not to think selfishly about not being able to do certain things with her any longer.

Better Choices for My Daughter

by Hormone Stories

Published on September 13, 2011

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I grew up in a house full of boys. My dad, my brother and I were outdoors every chance we got. My mom went along with us most of the time. Sometimes she didn’t. I didn’t know why, but as a kid it was not something I asked about. Now that I am older, married and have a daughter, all of the things that my mom did when I was young make sense. Now don’t get me wrong, I understood the reproductive cycle, menstruation, what was happening and why. What I did not understand was how it can affect your life.

My wife always had terrible menstrual pain which occurred on a three week cycle. I remember very early on in our relationship the worry and anguish I suffered, watching her in pain. There is nothing worse than seeing a loved one in agony and there is nothing you can do about it. When you can only give small comforts, holding their hand and being with them to let them know they are not alone. It is frustrating from the male perspective. There should be answers and solutions that are acceptable.

It took us years to find out why the pain was so bad, however, the solution came with a choice. To relieve the pain would mean removal of her uterus. We knew we wanted children and she was not going to give up children for any reason. We were fortunate that after having children the pain moderated for many years. However, all things must come to an end. The pain returned worse than it ever was and after many trips to the hospital, we decided that it was indeed time for her to have a hysterectomy.

My daughter is now of the age where she suffers from her monthly cycle. It is bad but not as bad as my wife’s was when we first met. As her father I hope and pray that she is not faced with the same choices her parents had to make. There should be more options than endure the pain or hysterectomy.

Avoidable Ignorance: Implications for Women’s Health

by Chandler Marrs, PhD

Published on September 7, 2011

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It is difficult to read the stories of suffering expressed by the women featured in our blog and not become incensed. We can joke about women’s hormone health and deride the science to fringe status, but our failure to recognize, investigate and create options for women has serious consequences. In my mind, this is an avoidable ignorance.

I borrowed that phrase from a quote by Dr. Albert G. Mulley, the new Director of the Dartmouth Center for Health Care Delivery Science. The full quote “no decision should be made in the face of avoidable ignorance” speaks volumes about the state of women’s health care.

How many women have sought treatment for a dysregulated menstrual cycle, menstrual cycle related pain, or other presumably hormonally modulated events only to be sent home without so much as a lab test but with oral contraceptives? Worse yet, how many women have had an endless array of invasive procedures only to receive an uncertain diagnosis and oral contraceptives. This is avoidable ignorance.

Why don’t women get routine hormone testing for what are presumably hormone related conditions? We wouldn’t treat high blood pressure without first measuring blood pressure or diabetes without first measuring glucose. Why then would we treat presumably hormonal conditions, with hormone modifying drugs, without ever measuring hormones before or during treatment? Is the pill so successful at treating all female symptoms that no testing is ever needed? Or is there some avoidable ignorance at play? Judge for yourself.

The most common arguments against hormone testing include:

1. The clinical reference ranges for hormones are too broad to be useful
2. The test results will not modify clinical decision making, so why test
3. Hormones are too complicated and variable
4. A good clinical interview suffices

It’s not that we cannot develop more robust hormone reference ranges, more sensitive hormone testing methods, perhaps link a woman’s unique biochemistry to her clinical symptoms, we just have not. The often repeated excuse that ‘hormones are complicated, variable and too difficult to analyze’ just doesn’t hold true given the state of science and technology today, neither does the clinical interview argument. A good clinical interview is always important and maybe even a lost art in this era of high tech diagnostics, but wouldn’t it be nice if the average time to diagnose some of these conditions wasn’t 5-10 years?

This brings me back to Dr. Mulley and his discussion on ending avoidable ignorance in healthcare. The responsibility, Dr. Mulley contends, rests with the patient. As a supporter of the e-patient movement, Dr. Mulley believes patients have the responsibility to educate the physicians and other decision-makers about what’s important to them. He says “unless we know what you care about, we have no information to inform investment or disinvestment” in any particular area of health.

In this context, it becomes clear, that maybe as patients, we have failed to own up to some of our responsibilities. Menstrual cycle disorders are uncomfortable to talk about. Who really wants to talk about never ending periods or blood clots—that’s just gross. And pain, one shouldn’t whine about menstrual pain, it’s unbecoming. Then there is the brain fog, fatigue, moodiness— all part of being a woman, or at least that’s what we’re led to believe. What if this isn’t normal? What if we, as women, are relegating our health prospects to ignorance? The Susan G. Komen Foundation did not come to prominence through silence, neither did the Endometriosis Foundation of America or any of the other women’s health organizations.

It is when we begin talking to each other and to our doctors that we can make it clear that these things are important; that the paucity of women’s health options is not acceptable. We need to become experts in our own health, to discern what’s normal and what’s not. We must drive the discourse, guide the research and build understanding for ourselves and our own well-being. We can’t wait for someone else to do this for us. Ignorance can be avoided.

See the full video clip with Dr. Mulley.

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