But what if I want to avoid the healthcare system as much as possible?

I've been doing a lot of thinking (and writing) about technology and health, and much of the conversations I've heard going on have to do with improving Health IT (HIT) with hospitals, clinics, and other healthcare providers. For those seriously ill, like ePatientDave, who are depending on their records to actively help manage their own care, this is a non-negotiable must-have. You've just gotta have access to your data, if you're going to have a hand in your own survival. There's no way around that.

I won't spend a lot of time discussing this. People with a lot more expertise and drive in the HIT space are discussing this actively. There's a lot of progress that needs to be made, but there's also a lot of focus turned to it, with new electronic medical records systems coming online and formal projects underway to craft solutions for the rampant issues that are keeping the "care" out of healthcare.

What I DO want to discuss, is another focus I've had. That focus is two-fold: 1) staying as healthy as possible, so I don't have to become dependent on the medical system, and 2) being able to manage my own health issues, should they occur, with the tools and information I need to maintain the level of daily functioning that I desire. Health concerns aside (and I do have some), I shouldn't be waylaid and held back in my dreams, goals and ambitions, because of health issues I can manage myself.

Now, I've had this dual focus for over 20 years, in no small part due to the botched healthcare I've received in the past. I lost some of the most vibrant years of my life to flawed diagnoses; in my early 20's, I was told I had a serious, possibly life-threatening illness by medical professionals who even after many, many months of testing, had no conclusive, substantiated evidence that I really had what they theorized was vexing me. I spent my early 20's living in mortal fear of spontaneous internal bleeding, skin discoloration which would disfigure me for life (and never go away), debilitating pain, and degeneration of my connective tissues. When everyone else my age was running around doing what one normally does in their early 20's -- working jobs that would form the foundation of future career paths, going out on the town with friends, enjoying social and outdoor activities -- I was holed up in my apartment, laying low, trying to keep my stress level as low as possible.

I was intensely stressed, in those days, and I realize now that the stress of the diagnoses I received -- at first, discoid lupus erythematosis, then sytemic lupus erythematosis (nasty stuff, as the names imply) -- probably put a lot more strain on my system that may have caused many of the symptoms they attributed to the condition. At the time I was undergoing tests, there was not yet a conclusive rule-in test. Everything was rule-out, back then, and they couldn't find anything other than lupus, to explain my symptoms -- skin rash above my right eye that would not disappear, fatigue, pain in my joints, general weakness, and more.

So, I got assigned a diagnosis of lupus, and it was off to the races.

What a slog that was... all those tests, all those consultations... and nothing conclusive coming of it... how maddening for everyone. I followed their directions to the "T", learned all about lupus, altered my lifestyle, took my meds, did everything I possibly could... but the pain just got worse, the fatigue was crushing, and my early 20's slowly faded into a fog of pain and disorientation from the meds.

Now, I don't bear anyone ill-will in that drama. (I used to, years ago, but I've since given that up as a pointless waste of time and energy.) I spent a lot of time seeing some of the best specialists in the country, but none of them had more to offer me than a prescription for anti-inflammatories and other meds that would buffer my stomach. My symptoms weren't budging, and I couldn't get any relief. Thinking back on that time, it must have been terribly draining for those docs to see person after person in such bad shape -- I shared a waiting room with deeply suffering people many a time -- and the lack of straightfowardness about my condition must have driven them nuts. I really felt for the docs I saw, back then, and I still do. And at a certain point near the end of my active involvement with them, I asked myself -- and them -- what I was doing there, if they could not help me?

They didn't have an answer for that, aside from saying they could try to reduce my symptoms. But their attempts had not been successful to that point, and I was wearing thin, with regard to meds.

Ultimately, I stopped seeing the docs. I stopped seeking help in the medical establishment. I focused more on the basics -- quitting smoking (yes, it can be done), eating better, and making rest and good sleep hygiene a priority. These basics have continued to serve me through the years, and when I start having symptoms again -- a small rash that appears and won't go away, intensifying joint pain, fatigue and weakness -- it's pretty sure sign that I'm neglecting myself.

I guess I'm just one of those all-or-nothing kinds of people. If I'm not all-in, I'm all-out, and I pay a steep price for self-neglect. And sometimes I end up at the doctor in the same state I was before -- me looking at them, leery of the medication they're suggesting, and just wanting my life back... them looking at me, not sure what they're supposed to do for me...

That being said, for this coming year, I'm prioritizing pro-active personal health management. I am totally behind the initiatives for getting health records in shape and making health information shareable.

But one of the unfortunate off-shoots of making data accessible, is that it's vulnerable to corruption and hijacking. A mal-formed database can end up revealing your personal data to someone you don't want to see it. Or a non-secure system can expose sensitive information that should never be seen by outside eyes. People in vulnerable positions are even more vulnerable, when the stewards of our data are nonchalant about our privacy needs and make light of the need for a thoroughgoing security/privacy policy.

And another one of the unfortunate off-shoots of all the HIT work, is that while it may empower me as a patient of a hospital or PCP, it is predicated on the assumption that I am actively engaged with a hospital or PCP. If I'm not "in the system" what then? What tools do I have to manage my own health on my own, outside the purview of the formal system? And what tools do I have to share the information I wish to share, when I wish to share it?

Will I be empowered only if I'm actively participating in a healthcare system which has not fully cared for me on numerous occasions, and has yet to prove itself as a 100% trustworthy partner in my health and well-being?

These are just some questions I have, and some concerns that nag me. I'm not writing off the whole HIT-iverse, and I'm not disparaging it. I just would like more options and more choices. And if I can't find them "out there" I will come up with my own system(s) that suits me just the way I need them to.

Who's afraid of the health care conscience clause?

Does anyone know the fate of the conscience clause that went into effect on 1/20/09 that allows physicians and other health care workers to refuse to care for/treat people seeking help, based on their own religious beliefs?

Under the rule, workers in health-care settings -- from doctors to janitors -- can refuse to provide services, information or advice to patients on subjects such as contraception, family planning, blood transfusions and even vaccine counseling if they are morally against it.

CNN ran a story on it last February (where I got the above quote), saying White House set to reverse health care conscience clause, but I haven't heard about the fate of the regulation.

I assume that no news is good news -- for the folks who hoped it would be repealed. That news would be not-so-good for the folks who looked to that regulation to protect their beliefs and desire to live their lives and pursue their professions consistent with their faith.

Like combining church and state, mixing faith with professional practice can be a tricky business. On December 16, 2009 a Medical group CEO quits (the) AMA in protest. I can understand why he would do so. The AMA stance was clearly not consistent with his own beliefs, and what choice did he have, really? If you don't agree with your governing body, and you can't change it to be more in line with your beliefs, then it seems the only really honest thing to do, is leave. Apparently a lot of people are doing that, according to the CEO "that AMA's membership has dropped since the 1960s from nearly three of four practicing doctors to closer to one in five."

Which is fine for doctors. But what about the rest of us? What about those of us who are not aware of our doctors' religious beliefs and -- not making any judgments about who's right and who's wrong -- we find out too late that our doctor does not believe in certain procedures that we believe may preserve our health and save our lives? What do we do? Seek out a second opinion, certainly, but how do we find out in advance if the next doctor holds beliefs that are consistent with our own? If we are in need of a procedure that one doctor would do, which might help us, but another doctor would not even remotely entertain (or possibly even discuss) due to their ideals, how do we find out what those ideals are before we enter into a relationship with them? How can we do our due diligence and make sure that we're engaging with a physician who actually can help us?

Now, I'm not here to call people right or wrong, or claim that one belief system is superior to another. I grew up in a very conservative part of the country, and I respect people's rights to believe what is in their hearts. You can't argue with a conversion experience, and people who think that conservative folks can be won over to another side through heady, intellectual reasoning alone, have a rude awakening ahead of them.

But objectively speaking, I prefer to go to a doctor who won't refuse to treat me based on their religious beliefs. I am queer, after all. I live with a woman, and I have been committed to her and our life together since 1992. We are legally married in Massachusetts (not that it makes any difference in Pennsylvania, where I was raised). Our finances and our daily schedules and our very lives are more closely entwined than conjoined twins. You literally cannot affect one of us without affecting the other.

Of course, outside my own circle of like-minded folks, in many parts of this country -- indeed, the world -- my relationship is one of sin and iniquity. It is an affront to God, and to the natural order of things. It is an abomination that some believe will condemn me to eternal hellfire and damnation. Some believe that I have deliberately chosen this life of sin, and that my choice condemns me to eternal separation from God -- unless I confess my sins, vow to change my ways, and take to a strictly straight-and-narrow path of righteousness that leads me to the rewards of eternal life.

And I know from personal experience that in some parts of this country -- and in the world -- there are people who believe that my soul is safer in heaven, after having confessed my sins and changed my ways, than continuing to life in illicit iniquity here on earth. I also know that in the church where I've heard it said out loud, "I would rather my child be dead, than be homosexual, because at least then I would know they were with God," there were doctors who attended that church, some of them quite devout.

Now, I'm not here to say who's right and who's wrong. I'm not here to criticize, but to observe. What people believe, and why, is one of the great mysteries in life, and it's not my place to judge others for their strongly held beliefs. But when I go to the doctor - whether I agree with them or not - it's my hope that I will have access to the type of care I am seeking. And it's my hope that they will do everything in their power to help keep me alive.

Now, I don't expect health care providers to utterly abandon their beliefs in the process of helping me. I would never ask someone to willingly violate their own principles. But I do want to know if my beliefs are consistent with theirs, and whether we have the same medical perspectives and priorities. People's beliefs can run very deep -- and very hot. And if you aren't aware that your doctor harbors grave misgivings about helping you continue to stay healthy and whole, because they don't believe that you are doing God's will in your life and you're better off in heaven than staying in sin on earth -- or they deny you access to a procedure you desire because they don't believe in it -- well, then it gets problematic.

As with many issues with me, this is a data issue. There are lots of doctors in the world, and there are lots of different ways of understanding why we're here and what we're supposed to do with ourselves. And for every person who doesn't agree with me or has grave misgivings about helping me, there is surely someone else who does agree with me, and who has no hesitations about providing me with certain types of care. The trick is finding them. Maybe there's a great database in existence, containing details on doctors' and other health care providers' religious beliefs, a list of what they will and will not do in the line of helping their patients. Maybe there's a vast info warehouse that holds details on the ideologies of everyone who's in the care-providing chain -- from doctors to janitors -- so folks on the margins of mainstream or with alternative religious beliefs, as well as smack-dab in the middle of the range of popular acceptability, can decide whether or not to seek care from a certain physician or a certain hospital. But I'm not sure there is.

I wish there were, though. I wish there were some data repository where I could locate docs who are "friendly" to me -- as well as the ones who are not sympathetic with me for religious reasons. I wish there were some place I go to could find out if the hospital I might be admitted at has nurses or janitors or lab techs who have the job of helping someone like me, might have some reason not to. I wish there were a database I could simply query to find a doctor who has no moral qualms about keeping me alive AND who is open to me being an ePatient -- using email and social networking and trusted online resources to better manage my own care.

I'm not trying to be discriminatory in a negative sense, but in a positive sense. Freedom requires responsibility, and what better way to foster responsibility, than by giving both caregivers and patients access to each others' ideological profiles? I am genuinely interested in ensuring that people of all faiths and outlooks have access to quality care that is consistent with their world view and values. I'm also genuinely interested in ensuring that doctors who walk a path of faith and who take that faith very seriously are able to practice medicine in a way that is consistent with their spiritual values. There are an awful lot of doctors in the world, with a variety of ideals and values. And there are many, many different patients with a wide range of beliefs. We just need to find each other more easily.

From where I'm sitting, the problem is not whether doctors and patients are properly regulated/protected or not... it's a matter of whether the right doctors are paired up with the right doctors. And vice versa.

Imagine if there were such a data store that was easily accessed, accurate, up-to-date, and easy to use -- then, at the 11th hour, when so much is on the line, well-paired doctors and patients alike would be able to provide and receive care that is consistent with both their needs and their consciences. They wouldn't have to have all sorts of extraneous (and possibly unnecessary) ideological dramas and crises over life-and-death issues (which are of course never easy to begin with). They could both know that they were dealing with another person who was on the same page as them, who both acknowledged, respected and understood their points of view. And being on the same page could clear away yet more of the anxiety that comes along with healthcare and relying on someone outside yourself for your continued well-being (or possibly death with dignity).

If a doctor or nurse or technician is not going to treat me because they firmly believe that the way I live my life is not in keeping with God's will for humanity, and they also believe that life in the hereafter is far more important than life on this earth, I have no argument with that. I understand many people feel that way, and I don't want to deny them their right to live consistent with their faith.

But at the very least, I want to know about it ahead of time, so I have a fighting chance to stay alive with the help of someone who won't deny me care, based on my "lifestyle choices."

Yes! At last, a real conversation with a doctor!

On Christmas Day, I got a great present -- an extended conversation about the issues of healthcare reform... with a real-live doctor. This guy is a recent addition to the family, the freshly minted husband of my partner's niece. He's doing his residency at a local hospital, and he's working in internal medicine. He's got an osteopathic background, which I find fascinating. Nothing against AMA docs -- MD's -- but yesterday I had an actual discussion with a doctor about the innermost workings of the body, how it fits together, how it interconnects, and what some of the root causes of disease and healing are.

He also said something I haven't ever heard an MD say -- that the human body is built to regain balance and to heal.

Most of the MDs I've ever talked to, have held to what seems like a "party line" -- we don't know enough about the body, it's a mystery, nobody understands it for sure, and medication is the one sure way to address issues that come up. Now mind, I'm coming from this from a patient's point of view, and I could be completely wrong, but that's just what I hear coming from the allopathic ("regular" mainstream medicine, as we often think about it), versus osteopathic camps.

Anyway, this doc and I had a great discussion about the ills of this new healthcare reform process we're all going through at the moment. I say "we're all" because we are ALL affected by this change. No one will escape it -- except apparently the people who are creating it, who have their own medical benefits package that will apparently be unaffected by this legislation.

I don't pretend to have all the answers, and I'm sure I'm lacking some really critical information. The whole issue is huge and vast and complex and as varied as the humans who are influence by it. And by the end of our conversation, in which he laid out very clearly all the different reasons we should all be deeply concerned about this, the bottom line for me was that when it comes to my health, I cannot -- and will not -- surrender ultimate control to anyone except myself.

Washington is going to do what it's going to do. Insurers are going to do what they're going to do. Doctors are going to do what they're going to do. I have no control over them. I can offer some ideas, but the systems which are in place which gave rise to the conditions we are facing right now are simply too vast and too intricate to influence on my small scale. Fixing what's broken will take time. A lot of time. And after my discussion with the doc, I can assure you, I'm not holding my breath.

Now, I could fret and worry and concern myself over the impending doom of healthcare reform. But I'd rather do my own healthcare reform, and take matters into my own hands. I'd rather have myself to thank (or blame) for my health and happiness. I'd rather be responsible for my own well-being, not depend on an official governing body to "help" me. The chances of any government agency being able to truly help me are slim to none. Certainly, it helps to have insurance for specialists and extreme situations. But for overall health and well-being, I'd rather take those matters into my own hands.

I actually have been, for many years. About 20 years ago, I had an extended bout with extreme, crippling, inexplicable joint pain. It wreaked havoc in my life at a time when I "should" have been getting on my feet with a career and savings account, and all the seeds of my future adult life. I was unable to work full-time, I was unable to do much of anything, aside from rest and move slowly from one carefully selected activity to the next. The experts -- and I went to some of the best in the nation -- were unable to offer me any conclusive answers. And the medicine I was on was playing even more havoc with my life.

Ultimately, I had to stop seeing them and take matters into my own hands. Change my life. Change my diet. Quit smoking. Start taking care of myself. Get my act together. Get on with my life, pain or no pain. And I did. It wasn't fun and it wasn't easy, but I did it. I've still got intermittent issues, but now I know how to handle them, and I do. I track my daily health. I exercise regularly -- as in, daily, not several times a week. I don't just watch what I eat -- I actively manage my health with the food I eat. And I don't expect anyone else to supply me with The Secret to a long and healthy life. I pay attention to what long-lived people do. I study what folks do to stay physically and mentally healthy for 100+ years. I make a point of tracking my progress with issues that come up. And I don't quit working towards improving what I can. There's no end to what I can improve. So I'm usually well-occupied.

I have been blessed to not have to deal with cancer in my body. I have been blessed with a strong constitution and an even stronger will. I have been blessed with good sense (for the most part ;) and a desire to do better the next time. And I've been blessed with an insatiable interest in useful information that I can put to good use.

I'm fortunate with what I started out with -- but if I didn't make the effort to do something with it, it would all go away. Determination and willpower and constant improvement don't happen on their own. Even the largest reserves will wither, if not attended to... and the smallest speck of potential will expand many times over, if given the proper attention and priority.

I still have a lot of thinking to do about my conversation with the doc, yesterday. There was a lot that was said that I need to noodle through. But when all is said and done, the thing I'm taking away from that discussion is that the government is really NOT my preferred healthcare provider.

I am.

Listening for more

Not long ago, someone asked me where I've been for the past few years. They read something I'd written, and they liked what they heard/saw. They seemed surprised that I haven't been more of a presence in the healthcare discussion.

The first answer that came to mind was, "I've been dealing with health issues in my family," which is all too true. Like so many Americans, I've had some pretty pressing health stuff going on in my immediate and extended family. It's demanded a lot of focus to sort it all out, but sort it out we did. As a lot of people know, taking care of health and navigating the medical system can take a lot out of you. It demands rigorous attention to detail, at times, and we don't often have much left over for other activities... like blogging.

Yeah, I've been busy. With the kinds of stuff nobody wants to have to be busy with, but so many of us are.

Then I thought about it some more, over the past few days, and it occurred to me that the second part of the answer is, "I've been thinking." One of the big pieces of the coping process for me has been pondering what's gone down, examining it, analyzing it, figuring out what it all means to me. I'm not perfect, by any stretch -- as an earlier post about my relationship with my doctor clearly shows. I have a lot to learn, and I have a lot of progress to make, in terms of establishing and cultivating the kind of relationships I want to have with the doctors and specialists in my life.

For me, the lion's share of making progress with health concerns is understanding the nature of the problems at the root of my (and others') discomfort and distress. Until I understand them and can extract some sort of meaning from them, I'm adrift in a sea of details... and non-actionable data.

I can't make much progress towards understanding what I need to, if I don't take time to closely consider what's taken place in my life... and I really like to make progress. So, I stop and think, examine and wonder, and if I'm lucky, I come away with something meaningful and useful and -- most importantly -- actionable.

But when you're in the midst of crisis, it's easy to get stuck inside your head. Being introverted by nature, I tend to first look within for the answers to my questions. Which is fine, until the wheels start to spin so wildly that they drown out everything else around me.

But sometimes, inner awareness is not enough. Sometimes you've gotta listen for more.

Which is what I'm doing now. I'm visiting extended family out of state, and lo and behold, I'm in the midst of a bunch of doctors and healthcare professionals. I'm also smack-dab in the middle of a part of mainstream America that is far from Massachusetts, in many ways. It's not Better, it's not Worse... it's Different. And it's a great opportunity for me to stop and listen to what folks here are saying about their health and healthcare, from a point of view that's shaped by circumstances very different from my own.

I've been going at a pretty brisk clip at work, for the past couple of months. And my head has just been spinning with all the thoughts I've got about how we care for ourselves and keep ourselves alive. Now is truly a wonderful opportunity to take a break, slow down, and listen to what people are saying about their health and how they care for it.

I have the opportunity to spend a few days with a new doctor, who is absolutely livid about the healtcare reform activity in Washington. I have the chance to find out what makes him so angry and so concerned, and what he thinks should happen instead. I have the opportunity to sit down and share a cup of coffee with a medical school registrar who's contemplating the prospect of retiring in the next 10 years or so, and having to shell out $1,000/month for health insurance for the rest of her born days. I have the opportunity to witness how people in this part of the world live, eat, sleep, and generally take care of themselves, and absorb that information into my world view.

It's a great opportunity to get out of my own head, and I don't intend to pass it up. This is a chance to widen my view, round out my considerations a little more, and gain a greater understanding about what it means to be alive, today -- and want to stay that way.

What a great present this is.

I would just LOVE to be more engaged with my PCP

And I think she would like it, as well. But every time I show up for what is even a routine visit, she tells me she's going to "get in trouble" for spending too much time with me. She's supposed to sail through the appointment, taking no more than 15-20 minutes to find out what my issues are and what I should do about them (with or without medication), and that's supposed to suffice.

Except that it doesn't. Because 1) I need more time to explain things to her (I have a lot in my head, you see, and I don't shy away from complexity, and 2) she needs the time to really find out what's going on with me, aside from the rash or the spreading poison ivy or the upper respiratory infection, and 3) I need more time to clarify with her the things she's telling me, 'cause unlike some folks, I have a real and pressing need to be involved in my own healthcare, my own life. I need to be WELL, on all levels, not just not-sick (or asymptomatic).

I have tried different approaches -- like making notes about my situation that I can share with her. This is an important thing for me to do, because I have a nasty habit of forgetting important details in the moment.

It's so predictable, you'd think I could stop the cycle. Before I get to the office, I am usually pretty clear about what's up with me. But then I get in there, I get talking to the staff (who are all very nice and also get in trouble for not moving fast enough, because they take too long with me - but we're actually having a human exchange, and it's not taking forEVER, so I don't see why that's so awful)... and I get caught up in scanning through the pharma-company-supplied pamphlets and fact sheets that are scattered about... and then the doctor comes in after a few minutes and asks me how things are in general, and by the time we get down to talking about what's going on with me, I am hopelessly distracted, and all I can do is shrug, sometimes. It's sad, I know. Very sad.

So, I've tried writing down notes and bringing them in. But my doctor tells me to put them away and just talk to her. As though that will be easier for me. It's probably easier for her... tho', come to think of it, I'm not sure why she prefers partial information to a complete picture? She also appears to get a kick out of me showing up with information I found online. It's not like I'm trolling around about.com (my apologies to the guides who work hard to put useful info up there) and relying on amateur infopreneur articles for my sources. I tend to seek out reputable sources, and I take the time to consider what I'm reading. But my doctor just rolls her eyes and says "internet" like it's a joke.

My health is not a joke. My survival is not a joke. My life is not a joke. If I can't get the right information from her -- because she doesn't have time to spend with me -- I'm going to seek it out elsewhere.

Now, I don't mean to beat up on my PCP. Overall, she gets high marks, and she's the best doctor I've ever had. I have awful stories about past experiences, including a multi-year spate of extended (inconclusive) tests in the early 1990s -- I think I'm still trying to build back my blood supply ;) -- and a string of doctors who dismissed me outright or made fun of me or refused to honor my genuine inquisitiveness.

Maybe I've just been walking around with a sign on my back that says, "Dear Doctor, please ridicule me -- and bill my insurance company for the hour you spend laughing at me."

Well, anyway, it's Sunday night after a long day of shoveling 5 inches of fluffy snowfall off my deck and stairs... snowblowing the driveway, and raking my roof, so I'm a little punchy. But really, I would love to be more involved with my PCP. I'd love to be able to email her with questions, or just raise a question without her looking over her glasses at me with amusement that I'm daring enough to guess that the spreading rash over my legs and arms looks like the pictures of poison ivy I've seen online, and my symptoms match that condition. I would love to be treated with dignity and respect, not grudging accommodation, and given the time I need to fully understand what she's saying to me about how to keep healthy... and discuss the ramifications of her prescription with her. (Let the record show that I will NOT be talked into taking prednisone again -- the 'roid rage is just not worth it to me -- I'd rather itch.) I would love to have her get to know me and my quirks and foibles, so she can understand what I'm saying and what it means, without taking it out of context.

All these wishes... I'm not sure if it's going to happen anytime soon, or if it will happen at all. Maybe they're as fanciful as a letter to Santa. But they feel pretty real and pretty important to me. I'll just keep trying. The one New Year's resolution I know I can keep is just that -- keep trying.