Thursday, June 30, 2011

Need to take a break for a while...

Feel free to comment here with your email if you'd like to stay in touch. I just need to hermit for a while and tend to some self-care.

The Management ;^*

Tuesday, June 28, 2011

Medication merry-go-round...

I have a sneaking suspicion that one of my medications has stopped working. This is something that happens pretty frequently for me for whatever reason. Maybe it's my Scottish liver, I don't know. But I'll reach a point where we can't go any higher on a medication due to side-effects or toxicity and it's just not working anymore. Then I have to ramp down slowly off whatever it is I was taking, including going through withdrawals. Once that medication is out of my system, we can then try a new medication and see if it works.

I slowly ramp up on it, reserving 24 hours for any new medication to see how it effects me. I don't drive. I just hermit at home. We generally stay at that dosage level for a week (sometimes longer, depending on the medication). During this time, I see how well the drug works. If it works, I stay at that dosage level for as long as I can.

If/when it doesn't work at that dosage level, we ramp up to the next level as before. I do the same 24 hours, because my reaction the first time may bow be the same as the second or third ramp-up. We continue this process until the medication starts working or we top out.
Sometimes, I can take a medication all the way to the maximum dosage with no effect. Surprisingly fentanyl, a *very* strong narcotic, has absolutely no effect on me (patch or lollipop). Sometimes, I hit a really nasty side effect that means I have to come off the medication immediately. Anything that affects norepinepherin (Effexor) gives me a racing heart beat.

I don't like medication. I'd rather just be able to take care of my needs without the use of chemicals. But my body doesn't always make the necessary hormones for me to stay alive. So, pills it is. But even though it's been over a decade, I still kinda resent them. Prednisone tastes nasty. However, I like it even less when a pill that formally gave me a sense of normal suddenly up and quits.

And it's not just that it stops working. It's that it stops working but my body now considers it part of the environment. So to come off the drug means to suffer the symptoms the medications was supposed to address while going through medication withdrawal. Yeah. It's not fun. Coming off Effexor meant depression, panic attacks, and the sensation that someone was bouncing a tiny rubber ball on the inside of my skull. It was the most disconcerting sensation. Coming off of my thyroid medication means /six months/ of symptoms as my body slowly rids itself of excess.

Also, it's always scary trying a new medication. Gabatril was a particularly scary one for me. For some strange reason, that medication cause the muscles in my eyes to go bezerk, causing my eyes to spin wildly. I could focus them briefly, which would allow myself to see myself in the mirror, but once they started spinning, I couldn't look in the mirror to see. I actually had no idea it was going on until I was taken to my next doctor's appointment. (My driver was too polite to comment.)

With memories like Effexor and Gabatril (to name only two), it makes it that much more difficult each time it comes to a new drug. Medications *scare* me, and rightly so. I'm not so innocent or naïve to think that putting a pharmaceutical in my body, whether FDA approved or not, won't do me great harm. I'm so allergic to sulphas I require an ER visit if I'm accidentally given one. Vencomyacin nearly killed me and that was in a hospital setting.

Life is a fragile, fragile thing and nobody understands that better than someone with a chronic illness. Medications are produced and prescribed because they have shown to have some positive effect on their assigned problem. But that doesn't mean we understand *everything* they do. New studies are always coming out. Too often I have been on some cutting-edge drug and had some strange side effect only to be told, "Well, that can't be possible. It's not in the literature!" Only to find out at a later date that, sure enough, that side effect is in the new published report. In the meantime, my doctor thinks I'm either lying or crazy. Sometimes a doctor trusts what I report, but that's a rare thing in my experience.

It's reasonable for me to not trust medications at this point. They're dangerous. That's why they're given under the care and guidance of a doctor and dispensed by a pharmacist. I will put my body in the care of my doctors and try what they suggest. If I'm uncomfortable, I can express that. I can work with my doctor to ensure safeguards are in place. I will treat my medications with the healthy (pardon the pun) respect the deserve.

And someday, the merry go round might even stop!

Friday, June 24, 2011

The Patient Catch-22

"You are your best advocate." How many times as a patient have you heard that it's our responsibility to stay informed when it comes to our health? Whether it's Dr. Oz, The Wall Street Journal's column The Informed Patient, or a website dedicated to patient care, all of them suggest staying informed. But when it comes to working with doctors, many absolutely despise well-informed patients. Doctors have such a bias against informed patients that they have a term for it: cyberchondriacs- someone who thinks they're sick just because they've researched too much online. This Catch-22 is, in my experience, potentially deadly.

I had researched my symptoms using an online diagnostic tool. It spat out several possible diagnoses, many of which I could rule out. One I really couldn't: adrenal insufficiency, a life-threatening condition. I asked the doctor for the test (I blogged the visit). He told me I didn't have it. He was wrong. When I got my records for a move to California, there was no mention of my request for the test. Nothing about my symptoms or complains. And nothing to take to an advisory board or lawyer...

I was dying. I caught it. He missed it. My experience tells me that I MUST stay and informed patient if I value my life. I was the one who suspected my pituitary and I was right. I was the one who thought it was autoimmune and I was right. But only when I had doctors who valued my opinion did I ever get the proper tests and treatment for what was actually wrong with me. All of it was provable or disprovable by simple blood tests. But my first doctor refused to run the tests. That is absolutely insane to me.

The problem is, of course, professional narcissism.

Consider a patient like Susan, who Dr. Scott Haig, an orthopedic surgeon in New York, wrote about in Time magazine in November 2007. The title of the essay: “When the Patient is a Googler.”

Susan, in her 40s, had been diagnosed with chronic patellofemoral pain. By the time she came to Dr. Haig, possessing a wealth of information, she had seen three other doctors. At once, he writes, Susan “launched into me with a barrage of excruciatingly well-informed questions.” On and on she went, reported Dr. Haig, raising every possible theory about her knee pain. He called it a “diatribe.”
The Medical Googler

Um... Excuse me? Check your ego at the door, sir. There is no way that you are such a gift to medicine that you don't have to look stuff up yourself! There are even studies!

Australian researchers reported in the British Medical Journal on their study that chose 3-5 search terms for hard-to-diagnose illnesses, and then looked at how Google did compared with reports published in the New England Journal of Medicine. The study found that doctors who use Google to help diagnose difficult cases can find a correct diagnosis over 60% of the time.
What Doctors Really Think About Women Who Are Medical Googlers

What's frightening, is that's the exact same success rate of real live doctors.

[Dr. Elizabeth] Burton says experts find a 40 percent misdiagnosis rate. "Out of those 40 percent, about 10 to 12 percent are significant. In that---had that diagnosis known---been known prior to death, at a minimum, the patient probably could have been discharged alive from the hospital during that hospitalization," she says.

What's more, despite all the advances in modern medicine, the rate of misdiagnosis hasn't essentially changed in 100 years.
Because The Doctor Isn't Always Right

What you fear being undermined, sir, is your relevance, not your authority. But you don't have so much to fear!!

See, I still want to ask the professional about my research. I know I'm the lay person here. But I'm pretty damn smart, and I did pass orgo chem (so I can pronounce those big fancy words, than you very much). I want the professional opinion because they are much more familiar with the territory of medicine than I am. I'm just an expert on me. I can tell a doctor everything about the forrest. But doctors are the ones with the skills to see the path through the trees.

Because even though I can out diagnose most of my doctors, they find things that never even cross my mind. It was my endocrinologist who sent me to a rheumatologist who discovered I had Sjogren's. It was my neurologist who discovered my all-over muscle spasms. I'd just thought those were flukes of my biology. "We Southern women don't perspire; we glisten." Um, no... That's a family autoimmune disease. "I've got strong shoulders." Yeah, because all the muscles are frozen in place. Oh, crap.

I think what medicine and doctors are having is an identity crisis. They used to be the gate keepers of knowledge of the body, but now that knowledge is available to everyone. They medical system has become so corporatized that doctors in med school take classes on insurance and office work that didn't exist 50 years ago. They're becoming cogs in a machine with less autonomy than ever.

But the truth is doctors are very much artists, each with their own style and approach. Lawyers are much the same way. We all want things this way. Problem solving requires creative thinking. Our bodies are not machines, they are individualistic; like works of art. I know my painting pretty well and I can say, "This is what I see." But the doctor, with their trained eye can say, "Ah, but did you notice this here? And did you see that nuance there. Now what do you see?"

The hard reality is, the Internet is not going to go away, and patients are gonna ask a lot more informed (or misinformed as the case may be) questions. Doctors can reject this and close their minds to these patients, and get scathing reviews in the process. Or, they can re-evaluate their pride and embrace this informed patient as someone who wants to be responsible in the management of their health.

Patients are very networked these days. Doctors can use that to their advantage.Because when I get a doctor I can work with, I always improve. It may take a little trial and error, but we get there, and I recommend these doctors to every support group I'm a part of. Between popular message boards like those at, Facebook, and LiveJournal, that's a hell of a lot of free advertising reaching the precise target audience. You can't pay for that kind of good press. So really, it's in doctor's best interests to work with folks like us.

Furthermore, we 'Medical Googlers' save y'all's butts sometimes. I took a call from my Aunt Gege when she was really pissed at her doctor because of something he'd done. But, because I'm an informed patient, I was able to explain to her that he had to do it that way because of x, y, and z. "Well, I wish he would have explained that to me!" To which I replied, "He probably didn't have the time..." And she recalled he did have to rush off to surgery. One more satisfied customer, your welcome. I don't even *know* this doctor and I'm advocating for him! Lol!

Doctors: See us informed patients as a golden opportunity for shining success rather than a challenge.

That's my opinion as a self-proclaimed "professional patient." ;)

"Like" this post below if you agree...

[Book Review] Next Medicine: The Science and Civics of Health

We all want to believe that medicine is firmly based on reality, that research systematically identifies important problems and that information is easily transmitted to doctors who apply it unerringly. Unfortunately, the truth is that the practice of Medicine is not base firmly on reality, that the transmission of research information into practice is precarious, and that the results are too often used selectively by practitioners.

The authoritative Dartmouth Atlas of Health Care notes, "Spending continues to increase without evidence that what we're doing results in either better outcomes or better patient satisfaction."
Walter M. Bortz, II, M.D., Next Medicine: The Science and Civics of Health p 81
Yikes!!! I don't know how well I'm going to sleep tonight.

Actually, reading this is a relief. It gives credence to the doubts I've accumulated over time. For years I was put on one drug after another either to run into hideous side-effects, no benefit whatsoever, or a benefit that failed over time. I've been through expensive nerve blocks that did nothing. Doctors are as much victims in this themselves. Dr. Bortz quotes Voltaire, who said:
Physicians are individuals who prescribe drugs about which they know little, for diseases about which they know less, to persons of whom they know nothing.
The way our system is set up with corporate medical system, insurance and Big Pharma all reinforces this trap. Our health needs are serving capitalism rather than the other way around, Dr. Bortz argues. Only 18% of doctors go into general practice. They're considered 'sniffle doctors' or low-level bureaucrats for specialists. That's where the money is. But in a case like mine where I have overlapping ailments, my care quickly turns into the blind magi looking at the elephant, and it was left up to me to put the pieces together (as my GPs were in over their heads). This system serves no one but shareholders: the ones with the pocketbooks. Any why are they the primary driving force in all this? They certainly aren't the folks with needs the system is supposed to address.

I have a problem with his numbers and his solution, however.

He mentions chronic illness as the number one drain on health resources: "It is now reported that 72% of physician visits are due to chronic conditions, as are 76% of hospital admissions. Chronically ill persons use three times as much medical manpower as those with acute: 7.4 versus 1.7 doctor visits per year." p 72 (He doesn't site the source, but it's "Medical Expenditure Panel Survey 1998" by US Department of Health & Human Services.)

He then goes on to focus his "Next Medicine" on the 55% of cases of premature death that are preventable through lifestyle changes (diet, exercise, not smoking) and his new medical structure is geared towards that 55%. But these are numbers for premature deaths, not chronic illness; the number one drain on resources. That's like the drunk looking for his keys under the street lamp even though he dropped them a block away because "the light's better over here."

I think he's excellent at identifying the ills of the heath care system. I believe, however, he falls victim to the same problem most doctors do: they don't like to talk about what we still know very little about.

So I went and did a little of my own research. 11.5% of the US population has a severe disability (a disability that interferes with daily living). Of that population, alcohol & drugs accounts for 0.7%, diabetes 5.7%, heart trouble 10.8%, high blood pressure 12.8%, stroke 3.2%, head or spinal cord injury 1.6%, hernia or rupture 1.8%, mental or emotional problem or disorder 2.8%, cancer 2.3%, arthritis or rheumatism 5.3%, broken bone/fracture 1.5%... No numbers for "obesity" (a big focus in his book). But adding it all up, if you assume that *all* diabetes and cardiovascular trouble is preventable (which it is *not*) that only accounts for 25% of the chronically ill. That leaves (for sake of argument) 75% of the chronically ill out of his "Next Medicine" equation. Not good, especially since they're they highest cost generators.

Dr. Bortz is great at diagnosis of the ills of the medical system. But, also like most doctors, can't prescribe solutions well-fitted to its chronic ills. I think the truth is closer to what it's always been. Physicians are individuals who prescribe drugs about which they know little, for diseases about which they know less, to persons of whom they know nothing. Chronic illnesses are the biggest drain because there is so little we can do. We try treatment after treatment and return again and again because the problem can't be fixed or managed. This is a basic failing of our ability to treat, not the system.  So I fail to see how his radically proposed changes would do any good.

Part I of the book gets an A+
Part II of the book gets an F

Tuesday, June 21, 2011

Battle "hardening"

There's this study out about raising the battle readiness of soldiers using virtual reality to desensitize them to combat so they can handle it better once they get there. It works! The study shows they can indeed make soldiers more tolerable to stress. One problem: the study stops there.

I was in the car with my father and he'd recently taken the family on a road trip to Graceland. We went to the museums, took the tours, went to the house he was born in (a tiny little shack of a house...) and emmersed ourselves in Elvis's world. My dad was talking about Elvis's manager and "TCB" (Taking Care of Business) on the side of Elvis's plane. I though about Elvis's tragic death and remarked: "He could get him to the moon, but he couldn't bring him back."

Yes, I am battle hardened to my health crises in the moment. I have practice. I'm an old hand at this. I know where my levels are and when the truly dangerous times are. I'm savvy.

But put me in a normal population of non-sick folk, and I'm at a loss. I don't care about what they care about. I don't react the same way to the same things. I'm a different person than my peers, and that alienates me. Sure, I'm a professional patient. I've got expertise. But what about the rest of my life?

I make sure to spend time reading and watching the news. Otherwise, I've found, I don't have polite dinner conversation. Even though I used to love current events, I really don't care anymore unless it impacts me directly. But that myopic point of view closes me off from other people. So I work at it. I read online news to makes sure I have at least 2 "did you hear about" stories per one hour of visitation. I make sure I know enough that I can repeat the story if they haven't heard so I can bring them into the converstation. I make sure the topic is broad and general enough for anyone yo be interested. I'm a science geek, but not everyone is.

I have to do this with effort because it doesn't come naturally to me anymore. We're all interested in the details of our own situation. That makes sense. It's our life. But my life is so alien from the general population that I may as well be speaking Greek. I'm *great* when a crisis strikes, but this is Colorado, not Beruit.

Yes, I function very well in limited circumstances. Yes, you can train a soldier to handle combat better. But when you mix them back in with the general population, our peaceful society labels their acutely honed skills as part of Post Traumatic Stress Disorder: hyper-awareness, extreme alarm response, hyper-vigilance, etc. Yeah, and it's a bad idea to put a bull in a china shop too!

What the psychologists are missing is the real-world conditions that military analysists like Dr. Tom Barnett understand. The problem isn't making soldiers battle-hardened, the problem is "they can't go from shooting people one week to handing out aid the next." ("The Pentagon's New Map" C-SPAN presentation 2002).

We can look to other psychological studies that show that getting yelled at actually improves critical thinking skills. It's a natural survival mechanism! But the psychologists in this study were wise enough to show that people that are frequently stressed like that also have negative impacts like.... Wait for it....: hyper-awareness, extreme alarm response, hyper-vigilance, etc.


Yes, we can get them to the moon... But can we bring 'em back? Currently, we suck at this. Not just with soldiers, but with all trauma survivors. We have a therapy system that can handle this, but unless a person becomes a danger to themselves or others, it's purely voluntary. And who is the person most likely to be blind to my behavior? Me.

People specialize for the events they most encounter. We can train people ahead of time to better meet these challenges head on. This idea is nothing new. We call it school. That we can do this with soldiers and patients is really no surprise. But just because we can handle the stressfull situation doesn't necessarily mean we can handle the aftermath.

Just because we can do a thing doesn't make it a good idea.

Monday, June 20, 2011

Joy's soul lies in the doing. --Shakespeare

When Harry Harlow took his students to the zoo, they were surprised to find that apes and monkeys would solve problems just for the fun of it. ...Harlow had noticed the overwhelming evidence that people and many other mammals have a basic drive to make things happen. ...Psychologists have referred to this basic need as a need for competence, industry, or mastery. White called it the "effectance motive," which he defined as the need or drive to develop competence through interacting with and controlling one's environment.
Jonathan Haidt, The Happiness Hypothesis 2006

I read this, and I suddenly understood all my frustration with my disease. It's this very drive, this "competence principle" that I have a biological need to meet, but it gets stymied by the physical or psychological demands of my disease. Melody Beattie wrote, "There's no negotiating with a disease." And I've found that to be true. I know my diseases' limits, and if I try to push past that, the consequences are not pretty.

I love to clean. Like Abby on CSI, "harmony without creates harmony within." So when I am physically unable to clean, it disorders me. I become a mess inside too. And I never fully understood until now why: when I am able to effect change in my environment, it makes me feel competent. Conversely, when I am unable to change my world, I feel inadequate. If I can't change my environment, it's natural for me, like all animals to get stressed and depressed! Go to any zoo and you'll fin a neurotic pacing animal. They can't change their environment. They're stuck. And going nuts.

It's why I want so badly to do projects. I have a million project ideas swimming in my head. But it's difficult to feed that need for effecting my environment. My hands don't last long enough to paint, sew or cook. Writing one of these articles generally takes two days. That's frustrating. Sure, I eventually get the reward, but the delayed gratification lessens the intensity of the reward.

Dealing with the environment means carrying on a continuing transaction which gradually changes one's relation to the environment. ...You can see it in the lethargy that often overtakes people who stop working, whether from retirement, being fired, or winning the lottery.

I, of course, would add: or becoming disabled.

You could say that this blog is affecting my environment, and it is. But I notice a distinct difference in my writing this blog rather than my previous blog.

My previous blog was a lot of symptom tracking, which was useful, and venting, which was necessary. I described everything I was going through from day to day. I pushed through the pain to blog because it gave my mind something to do. I sought out comics and comedians because the laughter was life-sustaning to me. But it never fed my need to change my environment. All it was was a reinforcement of the environment I couldn't change.

This blog is different. I force myself to look at dark and dangerous situation and find the good in them. I look for constructive ways to reframe my thinking. I look at the situation from the 'other side's' perspective to learn compassion for what they're going through. When I get feedback here, I know it's because I've helped or touched the heart of someone. Having that affect on my environment feeds me.

So I would say that while these guys are on the right track, they miss a big obvious: the change I make in my environment has to match with my values. For me, helping someone else help themselves is a huge value for me. For someone else, it may be brokering that deal, solving that case, mastering an instrument, or restoring an heirloom. It's the basic drive to say, "I did that!" and be proud of it. If I can't take pride in it, it has little, if any, payoff.

Now that I know this, I can keep an eye out for the little, positive things I can do that let me know I've made a change in my environment. When I see a chore, I can look at it as an opportunity for joy rather than something I *have* to do. I will take advantage of every "look, I made a good" moment I can, because that will help feed my soul.

It's always awesome to learn something new. ^_^

Sunday, June 19, 2011

Forwards, Backwards and Sideways...

I'm old enough that I went to home economics in junior high and high school, but young enough that there was an equal mix of guys in the class. In there, I learned that my mother's way of ironing was completely backwards. But in a way it made more sense: she had me start with the more difficult parts of ironing first, then move on to the large, easy parts. Over the years, I've found that both ways are useful depending on the situation.

If the situation is scary or unfamiliar, it's better for me to start with the easy and work my way up to more difficult tasks. That way my early successes bolster me for the harder push on the more difficult tasks.

If the situation is familiar or familiar but overwhelming, I'll start with the biggest piece first. If I can get what's troubling me most out of the way, then it's a downhill coast as the rest of the pieces fall more easily into place.

Other times, neither of these approaches works. Those situations are usually ones where circumstance require I do things in a certain order, regardless of difficulty. Then it's just a roller coaster. These situations take delicate self management. The easy times can also end up being tedious and boring. The difficult times can come so often as to be exhausting and overwhelming. That's where pacing, whenever I can manage it, is vital. If the situation is going to be a roller coaster, my best bet is to try and counter that keeping myself calm and steady. That way, I keep my wits about me.

One tool I have found extremely useful is a health log. This can be done on paper or online (there are even health trackers that send you reminder emails). When I track my symptoms, I can see where the roller coaster has been. I can then allow myself the time I need to recover. When I've strung enough good days together, then it's safe to start taking on larger tasks.

I use this because I have a tendency to forget, as the body wants to forget, the bad days. But then I can easily fall into the trap of pushing myself to far too fast and causing a bad day. I can forget that my rest is recouperation and start to feel guilty because it's technically a good day, but I'm still not yet up to "doing stuff." It's not often that I can "do stuff" on a regular basis, so it's easy for my mind to think I'm squanderring an opportunity.

Wisdom, however, has taught me that I'm not a light switch. It makes sense: even if a normal person is over the flu, they can still have a lingering cough for a month. Just because the offending symptoms have gone away, doesn't mean I'm ready to get up and go. I've just been thoroughly beaten up. I need some time to heal. Only because all my injuries are internal, from the outside that can look like needing a vacation to recover from my vacation.

But if it was a vacation, don't you think I'd be out enjoying myself rather than chained to the couch or bed? TV is not that interesting, and I caught up on my netflix queue years ago. I'm desperate for good entertainment on my bad days so much so that I'm usually jugging TV the computer (i.e., sedentary work) and a book.

When I feel good and rested, I do physical work, spend time with friends, and am out at social gatherings. I go to the library to do research I can't do at home. I hang out at the coffee shop. I run errands to stock up on groceries and take care of household projects beyond the necessary chores. I become engaged in life again, rather than simply being an observer. It's marvelous.

Whether I'm able to tackle a situation head on, whether I have to ease into it, or whether I just have to hold on is all up to the needs of the situation. My goal is to have as many ways to do things (forwards, backwards, sideways, white-knuckling) as possible. In that way I avoid situations where I need a phillips head screwdriver but all I have is a hammer.

Thursday, June 16, 2011

Akhilandeshwari, Goddess of Never-Not-Broken

This is an absolutely wonderful piece on the Hindu Goddess of Never Not Broken: Why Lying Broken in a Pile on Your Bedroom Floor is a Good Idea. ~ Julie (JC) Peters. I'd never heard of this goddess before, but her name alone enticed me. She's the Goddess of that moment when everything is in flux, our past answers have failed us and we lie broken in pieces on the floor. Brilliant.

She's a warrior goddess who rides the back of a crocodile. There's an interesting bit of imagery there. For all the crocodile's crushing jaw strength, how they actually kill they prey is by dragging them underwater and spinning them until they're so disorientated that they drown. The crocodile takes the path of least resistance.

From the Sufi (adopted by both Hinduism and Islam) there is the idea of the whirling dervish---spinning until you become so disoriented you're able to feel the presence of god. So it is that this warrior goddess rides a crocodile for it is in that moment of total disorientation that we have to try something new.

That moment forces us to break from the old and learn; it forces us to try. It shakes us out of our habits and allows us to see what is no longer useful or helpful. And with the warrior spirit of Never Not Broken, we pick up our pieces and forge on, born anew.

If I'm to follow the goddess's teaching, I need to look at those moments not simply as moments of catastrophic failure, but also as moments of unprecedented success. I can forgive myself the breakdowns because they were useful: I was able to see in a way I could not have previously.

Every moment that I've lain broken in a heap has not been without value. I certainly don't enjoy those moments, but man, that goddess is spot on. Every time I've had to remake myself, I've learned something incredibly valuable about me and my behavior. It's been grueling change, and not always in the right direction. But I've grown wiser and more mature each time.

There is value in being broken.

Wednesday, June 15, 2011

Professional Narcissism

My best friend and I were discussing professional narcissism the other day, because he'd run into some with a mental health counselor. We mutually agreed this professional got one more try to show why his opinion was correct. But if it was just dogged denial without reason, my friend would bounce. I told him of the fail-safe phrase that exists in the field of psychology: "I just don't feel comfortable working with this therapist."

It's a non-shaming, non-blaming escape hatch. And it exists for therapists too: if they don't feel comfortable working with a client, or don't think they can handle a particular issue, they can just pass. They'll find someone else to work with the individual, but they'd not duty bound to treat everyone that enters their office.

And my friend understood more of what I deal with as, sure, I've become a patient-expert on my own case. But my body is weird. Most doctors are going to have to return to the books to understand what's going on with me. That can be really intimidating, not to mention time consuming. But doctors are obligates, even if they're out of their depth. That's not fair to anyone.

It's a lose-lose situation, the doctor admits they're overwhelmed and it's a mark of weakness. And then there's the old joke, "You want a second opinion? Okay, you're ugly too." It's a personal affront to doctors if you call their judgment into question. Our schools train doctors this way, and our society teaches patients to believe the same: MD means 'Minor Diety'. But that traps doctors in a situation where they have to defend their answers even when they suspect or know they're wrong. It's called 'saving face'. And we've seen how absurd disasters can get when this value comes into play: look at Fukashima.

Aren't we sophisticated enough to give up this fairy tale of 'the all-knowing doctor'? We have documentaries on medical mysteries all over the place. We know for a fact these people are human, just like us. Can we add a little fairness for everyone's sake and allow doctors to get patients to the appropriate match in the first place? What's wrong with a little humility and honesty? (If you're a trial lawyer, I don't wanna hear it. You work on commission.)

Perhaps I'm just naïve. Is it insurance liability that drives this nightmare? Are there other economic forces at work?  I do not know enough about the industry to know.

Tuesday, June 14, 2011

What did I do wrong?

I was watching a program on Pol Pot, and they were interviewing one of his few surviving prisoners. You could just tell by she sat, the way she talked: this was a broken woman. And she asked the same question any of us does when we suffer: "What did I do wrong?" And with tears rolling down my face I answered her, because I had to say it out loud: "Absolutely nothing..." I understood how she felt.

There's nothing I could have done to prevent my diseases. There are some thing I can do that manage or exacerbate my symptoms. That is, some time I can make it better, it's real easy to make thing worse with no warning.

It reminds me of a story my mother told me about my grandmother. She was sitting at her sewing desk and raised her arms above her to look at something in different light. Suddenly, she miscarried. "Well," came her reply later, "I'm never doing that again!"

She was joking, of course. But that's what out minds like to do when problem solving: our primal minds become superstitious to avoid horrible consequence. Anyone who has developed a food aversion following the stomach flu can recognize this one. Sure, the lime jello had nothing to do with it... But out minds are wired to not want to eat something we've seen as our own vomit. It's a survival mechanism saying: Possibly poison! Avoid!

It's the same thing with suffering. I want to fix it. I want to find a way to get better and never suffer like this again. And there goes the hamster wheel of my mind. Did I eat too little? Did I eat something that disagreed with me? Did I not get enough sleep? Did I displease the gods?

But always, always, always I have to come back to the realistic questions. Is it humid out? Is the pressure changing? Is there a storm coming in? What's that air quality today? That's where the culprit usually lives. However, it's always with relief when I hear the first few rain drops. "Oh thanks goodness, it's my disease. I'm sure glad I didn't just spontaneously become unreasonable. These mood swings are not my fault! *Whew!*"

Sometimes, I can cash a reality check on my mood: "Has anything changed since yesterday? Any events where we made a mistake? No? Then what's all this fuss about? The world does not go from 'fine' to 'everything is in ruins' in 8 hours without a damn good reason. Is this reason that legitimate? Enough for this level of emotion? Yeah, that's what I thought. I outta my head right now."

I've gotten good at holding it in, but I seriously have to laugh sometimes. "Really, Pam?? It is not the inanimate object's fault. The toaster does not have a vendetta. There's no 'kitchen jihad'... Breathe, woman.... Slow down."

It's days that I'm most frustrated from the word go that also happen the days when I seem to have the grace of a toddler. So here I am, already an emotional powder keg, and that's the time I seem to be able to get tangled in a pull-over turtleneck. Haven't I been dressing myself for decades now? What the hell?

It's times like these it would be so easy to lose my temper. But the second I feel that wave rise, I force myself to relax. Letting my body go all enraged is an easy way for me to adrenal crisis out. There have been situations where it's been necessary for safety, but I wreck almost instantly. When the consequences are quick, it's easy to learn.

And that's the thing... Most of us are wired to learn quickly from negative consequences. We don't have to burn our selves over and over again to learn 'hot.' Once is enough. But if symptoms are chronic or (seemingly) random, we get stuck on: "What am I don't wrong?"

For years, my headaches struck on the weekends, resolving themselves Sunday night just in time for work the next day. But it wasn't until years later when the migraine struck within seconds of some good news that I realized my migraine trigger was stress, but the ramp-down, not up!

I had just found out my father's emergency heart surgery had gone perfectly. And right after the wave of relief was the wave of pain that knocked me to my knees. The pattern was there all along... It just wasn't clear enough for me to notice.

But had I done anything wrong? No. There was no way to prevent his heart doing what it did and there was no way to stop my reaction to it. Find out he's okay and stay anxious? Um....right.

Sometimes ain't nobody's fault. Sometime I just need to white-knuckle perspective until my disease lets me from its grip. Sometimes we've done absolutely nothing wrong, and we still suffer anyway.

I got through today reminding myself that my mood was no one else's fault. I get to go to bed tonight knowing my rotten mood wasn't my fault either. I will sleep soundly. ^_^

Friday, June 10, 2011

Passive Suicidal Ideation

That's when you want to die, but you're not going to act on it. Think of any time you've had the flu. It just being over sounds like a sweet option, even if it's one you wouldn't ultimately choose given another option. And though I don't personally believe in suicide for me, I've known too much and seen too much to blame anyone for taking that option. Yes, it can destroy a family. So can a disease. Neither is fair or good, in my opinion. But I don't get to decide these things.

Given the choice of justice or mercy and I'll err on the side of mercy. Success is a horrible teacher. Wisdom comes from mistakes. Mistakes come from bad judgment. Ergo, gotta give folks the opportunity to learn, or as Abe put it, "Let em up easy, boys."

Truth is, live long enough and everyone has skeletons. We all have regrets. The point is to learn from them and do better next time. That isn't always possible, of course. Some wounds don't get forgiven. But it's not the mistakes we make, it's our recovery from them that counts.

So yeah, do I think sometimes death sounds nice? If the pain gets bad enough, absolutely. But I fight each moment to live. Have I prayed for my own death? Sure. But in 'god's' time, not mine. Have I signed a Do Not Recussitate order hoping I would die on the table? In the past, yes. It's been that dark. Not anymore.

So I can't blame. I know the dark places souls go to. There are places where all hope is lost. I want to say that doesn't end things necessarily. I want to encourage everyone to fight on. No one may be able to help us, but that doesn't mean we can't help the people coming after us. There are small battles to be won, even if the war is lost.

Thursday, June 9, 2011

A place for everything...

And everything in its place.
-Ben Franklin
One of the big rules I've learned for self-care is establishing habits. If I can set up even the smallest of routines or memory gimmicks can help on days that my symptoms take priority. (Wednesday, wind the clock and water the plants. It's a W day.) One thing I've always loved is to have a home for everything. That serves the dual purpose of clearing up clutter, and should I or anyone else need to know where something it, it has a home; easy finding.

Cell phones, keys and other portable items can be tricky to keep track of. A cell phone case you can clip to your keys is one solution. That way you can call from another phone to locate both items (and it will help with resisting the urge to use a cell phone and drive). Another solution is to designate "stations" where full hands can quickly dump items for retrieval later. (I have 3 locations where my cell phone and keys may be.)

Medication kits
I have a metal Seattle lunch box that I use to carry my medications. It's discreet, it's cute, and it protects the bottles. I also carry spare first-aid items in there to have my one-stop treatment all there.

Emergency kits
I have an emergency shot and spare medication I keep in my purse (guys- there are various small cases out there for cigarette packs, playing cards and the like that can serve your needs---wallets can crush pills). I also have spare clothing in my car for a sudden shift in weather as well as extra food and water should I get stuck in traffic with a health need.

Disinfecting wipes and lotions
I always travel with these whether for my emergency shot, or if I'm just trying to avoid that flu that's going around. I have scars on my face from MRSA. I don't mess around anymore.

I wear medic alert jewelry, but I also have a card in my wallet with emergency information including: doctors, medication and dosage, next of kin and local emergency contact numbers. In my phone, I have certain entries marked ICE. That's medical shorthand for In Case of Emergency. If I'm incapacitated, medical response teams will know better what to do if a page can speak for me.

With these habits in place, I can move through my day with more ease and less concern.

Wednesday, June 8, 2011

Life in the moment...

Contrary to popular belief, living in the moment isn't all it's cracked up to be. There's the old parable of the ant and the grasshopper. The grasshopper played all summer while the ant worked. Come winter, the ant had food stores and the grasshopper was screwed. Or as my Uncle George puts it: "Planning for the future gives relevance to work done in the present."

I am forced to think moment to moment with my pain. It's just too unpredictable. I don't know how I'm going to feel in the next hour let alone next week. Early on, I learned very quickly that this is a very isolating way to live. People like reliability, predictability. Most people don't like changing plans at a moment's notice. In more equatorial cultures, this is different. The United States, however, runs on a tight schedule.

Living in the moment has gotten me into some really bad habits, too. I don't know what my body's needs are going to be from one week to the next, and that's really difficult to budget. It may be 'damn the costs' to get through right now so there will be a tomorrow. I'll deal with the future when it gets here. But that's a dangerous way to live especially when money is tight. I still have to eat at the end of the month, not just the beginning.

Because of this, I can't afford to not know where my money is going. But facing finances can be terrifying especially because I'm often forced into acting badly out of financial need. Can't get blood out a turnip, so yeah... My credit rating is laughable.

Was I that way before? Heck no! I had paid off my credit cards, was paying more than I owed on my student loans, was paying my car loan on time, had an IRA and was running my own business. Oh how the mighty have fallen!

What surprised me was how forgiving landlords were of medical debt. Apparently it's too common to hold it against people. That's scary.

But for now, physical, mental or emotional reasons can force me into living in the moment. And that doesn't mesh well with a scheduled world. I do my best, of course, but I know my limits. Yelling at a rose doesn't make it bloom, either.

I'm lucky. Today I have friends who will try to connect with me even through the bad times, and they help me lavish in the good. They're not pushy, and I never have to explain myself. I've been in places where I didn't have that, so I don't take them for granted.

I've also worked hard with my relationships with my doctors where many have outright waived their 24-hour cancellation notice for me. I can go from fine to incapacitated in 15 minutes. I'm honest about it and I don't abuse the privilege.

I'm learning now, though, that I need to get stricter with my awareness of the passage of time. It's too easy for days and weeks to bleed together. My memory, or at least my ability to access it, is one of my fallen soldiers in this disease. Blogging, as you may have guessed, is extremely useful for keeping track of my mind. It was excellent for keeping track of symptoms and research. Having folks as cheerleaders was awesome to say the least.

As my disease dictates it, I live in the moment. But order has always fought chaos. I can use whatever tricks I need (legally, of course) to try and maintain what order I can. I try to keep the, "ooo...I kinda had a feeling that was a bad idea" moments to a minimum. Every once in a while (centennial reunion, etc.), to me it's worth a little risk. I pay, and hopefully not dearly. But there are always costs: seen and unseen.

Live in the moment? Not unless I have to, thank you. It can be a nice vacation, but it's not a place for me to live.

Tuesday, June 7, 2011

Gallow's Humor I

One of the things that has saved my live on numerous occasions is laughter. When they say it's the best medicine, they're not kidding. An Eddie Izzard special on HBO the day before my colonoscopy (and the day of my first adrenal crash---scary!) was mana from heaven.

Since then I've come to love lolcats, demotivators, and all things gallow's humor. Being able to laugh at my disease is priceless. It puts the disease in its place.

So without further ado, here are 'Top Ten' signs you have neuropathy (or similar):
  1. You're surprised when that creepy crawly feeling *is* actually a bug on you.
  2. You can enjoy playing hide & go seek with your own feet when they're under covers: "where aaaaarrrrrreeeee you???"
  3. Painting abstract art is easy-peasy since everything's blurry anyway!
  4. You know *exactly* how the Princess felt in "The Princess and the Pea", and think taking up genealogy now sounds like a really good idea...
  5. It's a joyful surprise to know that water can have temperature rather than just being wet.
  6. You sound really courteous asking if it's to warm or cold in the room for someone when really you're fishing for information.
  7. What smell? (And you've gotten very practiced at hygiene as a result...)
  8. You're taking up comedy because every bone feels like a funny bone.
  9. You develop super ninja powers and creep up on cats.
  10. You can out-do the weather man.

What are your ways to laugh at your disease?

Monday, June 6, 2011

Making friends with your body

Contrary to the stories, I see nothing noble in "toughing it out." That may be a Protestant work-ethic I was raised with, but taken too far it becomes soul-shattering. Taken too far, it can kill you. There's nothing noble about that. There have to be reasonable limits.

I hate what my body does on a regular basis. But it's a dangerous thing for me to hate my body. That hits some psychological buttons there. My body is part of me. I'm hating part of me. Ew.

So what do I do? Because, as far as I'm concerned, my body may as well be Pol-Pot or Stalin for what it does to me. Even though my body treats me like that, I can't allow myself to think of it like that. I make an enemy of myself.

The best answer, believe it or not, actually came to me in a vision induced by a level 10 migraine. I was in complete white-out, even though it was pitch dark in the bathroom at night. I was resisting taking pain pills. I was in the shower trying to treat with ice packs and heat. And in that white-out I saw myself---a version of myself---holding the hand of a very young version of me (about 5). And I asked myself:

"Would you allow this child to be in this level of pain?"

"No! Absolutely not!"

"Then why are you doing it to yourself?"

I broke down in tears and took the damn pill. Because I'm not cherishing myself when I allow myself to suffer and there's an option to notI don't need to push myself hard needlessly. I can think of my body like a sick child rather than a dictator. Then I can't forgive it for the burdens it places on me. Then I can even make friends with it.

Sunday, June 5, 2011

The Rules of Happiness

The folks at TED kinda misled me when they titled this piece, but I kinda figured that was the case. I get extremely skeptical when anyone claims they know how everyone can be happy. So when I saw Seven Rules for Making Happiness, I knew it was probably gonna fall short of my expectations. I was happily (pardon the pun) surprised.

What surprised me was Stefan Sagmeister hit on points that really resonate with my life. That, in the US, $50,000 adjusted for cost of living, is about baseline happiness for money. Anything more than that gives such a low payout as to not be meaningful. That, if people have a good social support network (married/meaningful friendships with several people), they are far more happy than people going it alone. And lastly, if a disease is managed well, it can still have an impact on happiness, but generally healthy people aren't any happier than diseased people. The key phrase here is, of course, "managed well."

Elizabeth Kubler Ross revolutionized hospice care, and I am forever grateful for her work. But I was a little dismayed reading the chapter "Anger" in her famous book, On Death and Dying. In it, her example for the Anger phase is a man with skin lesions all over his body. The doctors don't know what is causing it and he's in constant, chronic pain. The sentiment in the chapter is how pitiful this man is because he just can't move on to the acceptance phase. Excuse me, seriously??

So it was absolutely refreshing to have Sagmeister make the distinction that they have to be manageable health problems. It absolutely validates what I and other patients have been trying to tell the health community for ages. If the symptoms interfere with my choices, my ability to be happy is stymied. Manage the symptoms of my disease, and I'll get over it!  And it's not so much a conscious choice as an unconscious one.

Sagmeister talks about a bit from Freakonomics where it's more likely for a guy named Dennis to become a Dentist, and that Paula is more likely to marry Paul. And the thought this was silly American statistics at first, until he looked at his parents names. And his grandparents names. From this, he brings up that we like to believe our conscious mind is the all controlling element in our life. But really, the conscious mind is like man riding on elephant the subconscious. Sure, you can direct things a bit, but the elephant is largely in charge.
The real-world evidence for these unconscious effects is clear to anyone who has ever run out to the car to avoid the rain and ended up driving too fast, or rushed off to pick up dry cleaning and returned with wine and cigarettes — but no pressed slacks.

The brain appears to use the very same neural circuits to execute an unconscious act as it does a conscious one. In a study that appeared in the journal Science in May, a team of English and French neuroscientists performed brain imaging on 18 men and women who were playing a computer game for money. The players held a handgrip and were told that the tighter they squeezed when an image of money flashed on the screen, the more of the loot they could keep.

As expected, the players squeezed harder when the image of a British pound flashed by than when the image of a penny did — regardless of whether they consciously perceived the pictures, many of which flew by subliminally. But the circuits activated in their brains were similar as well: an area called the ventral pallidum was particularly active whenever the participants responded.
[Who’s Minding the Mind? Benedict Carey The New York Times 2007.]

I've learned the hard way to trust my intuition. That is, it took a whole lot of mistakes. I used to push myself past the feelings I was getting from my body in order to perform. That invariably lead to crashes and me feeling like a failure personally because of what I couldn't do physically. But I know to trust myself these days, and not listen to the well-meaning advice of others who tell me to "push on." Sometimes it is absolutely okay for me to push myself. Sometimes it's not. I'm the only one who can really tell. And since I'm the one who ultimately has to pay the price, I'm the one who needs to listen.

It's paid off. I can now tell from my symptoms, within about a 3 hour window, when my migraine will hit. That allows me to plan responsibly. I can tell that when start to get my "Princess and the Pea Syndrome," that is, when I become hyper-aware of my hands and feet, that it's not a safe time for me to be driving as my 'neuropathic-type pain' is coming. I will slow my walking pace without thinking about it. It works in reverse too. When I'm well, I move faster and I engage in more activities without a second thought. Sometimes the difference is dramatic. I'm so used to being on the couch, that once I'm well, I'm up and half-way across the room before I realize I couldn't do that the day before.

And I couldn't listen to my intuition when I was listening to everyone else. I was so busy ignoring my symptoms and reaching for 'normal' that I wasn't learning where my new levels were at. It wasn't until I allowed myself to rest and restructure my life to my pace that I was able to find out what I was still capable of. It was scary, at first, and not everyone accepted. Some people don't accept still. I've been personally blamed for when my symptoms have stopped me. I can't let that be my problem. My health is my problem, and that's big enough.

My rule of happiness? No one else can tell me what's going to make me happy, because they're not the one riding the elephant. It's not always under my control, but I can influence it depending on where I choose to focus. My happiness is my responsibility, and when I'm able to take ownership of that, I get there.

Saturday, June 4, 2011

Why me? (Why not?)

"Why me??" is an easy question to ask ourselves when we start suffering from a chronic illness. The symptoms and pain we suffer are very personal, so it's reasonable to take our suffering personally. However, I've never found this line of reasoning to be constructive for me.

When I have a long stretch of pain and stuck indoors on the couch, it's easy to loose sight of the big picture. My pain makes me anxious and depressed. Anxious because there may be no light visible from my end of the tunnel. Depressed because worse, it's not a light at the end of the tunnel--that's a mirror and I'm on fire. Which doesn't make for good coping thoughts!

Seeing myself not doing anything, I start to think it's me, not my pain that's the problem. On the couch, it's tolerable. But I'm still anxious and depressed. I begin thinking that I'm not going out and doing things because of my mood, and I just need to pull up my big-girl pants and tough it out.

Then I go to move...

It feels like all my muscles are filled with sand. The tendons in my joints ache and the soles of my feet burn like I've just run a marathon for the first time. And I go, "Oh yeah... I feel like reconstituted poo," as I carefully lie back down.

When the good days come, I don't even think about moving. I'm up and going towards what I want faster that I realize and I surprise myself. My tolerance for noise and people goes up. And I'm almost manic for the first few days, I'm so giddy to be doing again. (I keep it to a dull roar.) I medicate only to keep withdrawal at bay, but my need to medicate drops by 75%, easy.

I don't get anywhere near where I was before I was sick (gonna have to do a lot of careful rehab to get there). But I get functional at a laid back pace.

I'll take it. It's galaxies away from my worst pain. (The kidney stone they though they were gonna have to hit with ultrasound was an 8. My migraines got to 10. Anything temporary below 7 is ignorable. Anything below a five I actually have trouble noticing, which has gotten me into trouble, unfortunately (e.g., "I wonder how I got that bruise?" as I noticed a black quarter-sized bruise on my knee. Knees generally aren't places ya hit and don't notice, lol).

But I forget, when too many bad days are strung together, who I am. The need to lie down, I twist into a 'desire' to be lazy. Because lazy is my fault and a fixable problem. Does a number on my self-esteem though: lazy, irresponsible, unreliable, burdensome, selfish... All those negative opinions start swirling around and I'm playing whack-a-mole with Blue Meanies. To quote the opera 'Evita' (Rice/Webber): "It's very difficult to keep momentum if it's you that you are following."

I was talking to a friend of mine who was having some real difficulty in his own life. He posed the question:

"How do you deal with the unfairness of it all??"

I thought for a moment and cringed. "You're asking the wrong person..."

"No," he said quite convincingly, "I think I'm talking to exactly the right person."

"Why?" I asked, knowing he had a reason.

"Because you're not going to give me some Pollyanna view of, 'Don't worry, it will all work out...'"

He had me there. So I told him a story.

"I was watching the sun set last night, rocking out to some tunes in my car, and I was watching the swarms of mosquitoes as they played in the wind. And I thought, 'Look at them dart, as if to the beat of the music. I must seem so slow to them.'

"And then it hit me... What would one night feel like, if I lived at the pace and lifetime of a mosquito..."

Knowing I'm an BA of English, he did the math for me.  "That would be seven years..."

"Right... So what if that's this darkness in my life? What if it's so impossible, like making the sun rise or set, that it's just a matter of getting through?"

I don't have a lot of 'Faith.' Spiritual Faith, not faith in gravity or some such. It's too difficult for me to believe that there's a benevolent Higher Power looking out for me. I know and have experienced too much. But there is one thing that I have Faith in:

Time will change things. I just have to pull through until it opens an opportunity to me. That's not always easy or simple, but it is something I can rely on...

Thursday, June 2, 2011

Staring Down What's Coming...

Courage is not about being unafraid. It's feeling the fear and doing what's necessary anyway.

I like to think of life like a comet hurdling through space. Some of the ice crystals are safe in the core, just happily existing, blissfully unaware. Then there are the ice crystals at the edge, like me. There's a good chance I could get violently ripped off at any moment and sent spinning into space.

When I was a little kid, we used to go swimming at Jones Beach on Long Island. I'd grown up around Lake Michigan, but an ocean is a completely different story even from the Great Lakes. I quickly learned that if trying to walk normally into the water, the waves would eventually bowl me over once I got to a certain depth. And in really rough waves, this was a problem: the water at the bottom is often moving out while the wave is going in. I'd get knocked backwards from the top and have my feet swept under me from behind, and end up horizontal underwater. But what I eventually learned is that if turned my body to the side, and pushed my shoulder up and into the wave,  leaping up as I did so, I'd cut through the wave like a knife.

I can have two attitudes towards the violent forces that are whipping my life around. I can be bowled over, screaming and flapping in the wind. Or I can brace myself and try and plow into this head on. It's exhausting, so sometimes I do still get bowled over. That's okay. I can't battle all the time. But when I get the strength again, I pick myself up, lean into the wind and and scream YEEHAW!!

I mean... is there any other way to ride a comet? ;^)

Medical Arrogance and the Effects of Prejudice

One of the most fascinating stories I have run across about medical arrogance is actually a story about doctors turning on one of their own.

In 1847, Dr. Ignaz Semmelweis figured out that if the doctors and students at his hospital washed their hands, it would decrease the spread of disease. This was revolutionary, because at the time, doctors believed that illnesses were caused by a 'disruption of the four humors', with the common 'treatments' being bloodletting, enemas, and cupping. Based on his discovery, he was able to drop mortality at his hospital from childbed fever by 90%. But his theories were rejected by the medical community. Other doctors believed there was simply no way they could be the cause of disease spread.

What absolutely strikes me is Dr. Semmelweis's reaction to the rejection. From Wikipedia:
Beginning from 1861 Semmelweis suffered from various nervous complaints. He suffered from severe depression and became excessively absentminded. Paintings from 1857 to 1864 show a progression of aging. He turned every conversation to the topic of childbed fever.*

After a number of unfavorable foreign reviews of his 1861 book, Semmelweis lashed out against his critics in series of Open Letters. They were addressed to various prominent European obstetricians, including Späth, Scanzoni, Siebold, and to "all obstetricians". They were full of bitterness, desperation, and fury and were "highly polemical and superlatively offensive" at times denouncing his critics as irresponsible murderers or ignoramuses. He also called upon Siebold to arrange a meeting of German obstetricians somewhere in Germany to provide a forum for discussions on puerperal fever where he would stay "until all have been converted to his theory."
*Emphasis mine, because wow... that sounds.... hauntingly familiar.

This wasn't a guy who was chronically ill. This was just a doctor going up against other doctors. And it was the act of their rejection in the face of clear evidence that drove him to that behavior. Simply not being believed, he became obsessive about the topic. This leads me to the conclusion that it's not being sick that drives us crazy, it's the disbelief of others that drives us crazy.

And with so many articles out there warning patients about the evils of obsessive thinking about our disease... I wonder what kind of revolution in care could happen it doctors simply expresses a willingness to believe in their patients.

Because that's largely what a medical education does: teaches doctors not to trust their patients. I saw a friend of mine go through med school, and when he became a resident, he constantly felt like he had no clue what was going on, despite his education. It's just all so HUGE. Doctors know their patients haven't gone through this, so obviously any of our observations are... suspect.

Studies on prejudice in psychology show that when people are treated with suspicion, they become depressed and unable to view themselves as in control of their lives:
"Our results show that perceptions of unfair treatment, like other chronic stressors, are psychologically burdensome... Many... suffer emotionally because they are unable to view themselves as efficacious and competent actors when treated with suspicion and confronted with dehumanizing interactions."
Keith VM et al (2009). DOI 10.1007/s11199-009-9706-5
Now, I had to take this quote out of context, because there haven't been any studies on prejudice towards patients as patients. All the studies are on race, gender, and visible disabilities. But the results are consistent. People feel depressed, angry, isolated, and suffer a loss of self-esteem if they feel the deck is stacked against them. Currently, however, patients get blamed for these reactions.

This needs to change.

I know this change is not something that will come easily. I have Semmelweis experience to warn me. I'll be seriously surprised if it happens in my lifetime. But he was eventually vindicated, even if he wasn't able to know that satisfaction.

Someday... *sigh*

[Update - July 15, 2011:]
This talk from TED by Tim Hartford provides other examples.