I also believe that we Americans have become complacent. How many generations must die to protect our freedoms, before we remember to use the most basic forms? I am probably the worst offender on this count. Dealing with all I have on my plate may be an excuse, but it is a weak one. Democracy only works if we are all participating.

On that note, I’d like to tip my hat to someone I doubt knows the meaning of the word complacency. He’d probably blush at the description, but in my less than humble opinion, he’s the embodiment of what is best about the US. His story is one that has been told countless times before, the every man who stands up to the establishment. Unfortunately life rarely imitates fiction, and whistleblowers rarely get Hollywood endings. Yet this story is more engaging than any Hollywood could churn out, if for no other reason than the sheer brilliance of the central figure. That his brilliance is but a speck compared to his dedication and courage makes him all the more appealing. I wish there were more people like him.

My Grandfather was my father figure, and he had more integrity in his pinkie than most people I’ve known. Some might think him unyielding and set in his ways, but nothing could be further from the truth. He would give you the shirt of his back if you looked like you needed one. He would point out the cliff you were pelting towards, and then grab your hand to keep you falling over the edge. When he was in his 80s, a dear friend had gender reassignment surgery. Most of their friends abandoned her, either on moral or religious grounds, and likely some level of discomfort. My Grandfather remained close to her person until his death. That was a rare response 20+ years ago. He was kind, loving, compassionate, and just.

What little I know of Justen Deal reminds me of my Grandfather, the most honorable man I have ever known.

Being a person who focuses more on logic than emotion, I know that pain medication has it’s dangers, is overused, addicts abuse it, it poses a risk to the general population, and so on.

As someone who uses pain medication on occasion, I know that it’s devilishly hard to find a doctor willing to prescribe it, particularly in the post “war on drugs” era.

My problem is this: why do we punish people who through no fault of their own are living with chronic pain? If the powers that be (doctors, government, what have you) don’t like the pain meds available, great, dream us up better pain meds. Give us more options. I’m a parent, I have a small business, and I like being able to drive when the need arises. Narcotic pain meds make all of those things needlessly hard. I would trade my right arm for non-narcotic pain meds that don’t otherwise negatively impact my ability to function (excessive fatigue, interfering with other medications, interfering with sleep, interfering with appetite, causing headaches, or potential for harm) and are as effective as narcotic pain meds.

We don’t punish cancer patients by denying them treatment because some people smoke (or eat too much, or drink too much, or any other risky behavior that correlates to risk of developing cancer).

I can’t really blame the doctors, it’s a scary world out there as far as this issue goes. Some bite the bullet, and do it anyway, and try and make an uneasy pact with their subconscious about the potential fallout.

Others won’t write that damn prescription, no how, no way.

Of the most notable recent visits to Kaiser in my quest to find someone willing to learn about and treat AD, we were assured that Dr. T (names have been changed to protect…. nevermind) was great, very inquisitive, loved learning about new diseases, and so on. Almost as an aside, there was the tiny post-script that some patients didn’t think he had the best bedside manner.

Not an issue for me, I’d go to Voldemort himself if he’d just treat this damned disorder already. So I make an appointment.

A few days later I get a call from his nurse trying to un-make the appointment, using some incorrect information, and badly flawed logic. Having neatly dispensed with both of the above, I gather information, and wait for my appointment. A few days later, the doctor himself calls to try and un-make the appointment. Not succeeding there either, he agrees to see me, but says “I don’t have a lot of time to spend with you”.

Okay. Duly noted (cough).

I bring in the information about AD, we have a less than pleasant discussion where I spend most of my time trying not to come across as being too demanding, he is flatly insulting, and I’m trying to keep my husband (there for moral support, since I no longer go to Kaiser alone) from knocking his block off (figuratively folks!).

He says to make an appointment for a month out, he’ll do some research, and we’ll come up with a plan then.

Fast forward a month, and he starts the discussion with telling me he doesn’t in fact have time to research AD. He did read the information I brought in last time about AD, and spent the majority of the visit telling me why the researchers don’t know what they’re talking about, and that he doesn’t think I even have AD.

He did offer that surgery might be able to help. I explained in my experience surgery did more harm than good, and for the most part, my current regimen was adequate for dealing with symptoms, that my greater concern was long-term risk factors and how to mitigate them.

He asked what my current regimen was. He was supportive of diet and exercise, although completely dismissive of the suggestions made by Dr. Herbst as useless. He couldn’t see how chiropractic care could be of any use, in spite of my saying it reduced my pain dramatically. He asked what adjustments could possibly do to help with pain, and I tried some analogy about pulleys and vectors, and friction from lipomas causing irritability of muscle fibers, but he wasn’t impressed. I mentioned that I used to use Lidoderm patches, at which point he merely rolled his eyes violently. I explained that for some reason I have skin that seems to have mistaken itself for an oil slick, and as often as not, when I’m having a flare, they merely fall off within 15 minutes, no matter what I do to help them stick. They’re great when they stick, when they don’t, it’s a useless waste of money. He of course didn’t believe that either. He was similarly nonplussed with my use of  heating pads and hot tubs and therapy pools, in spite of my using them with great success (at my own cost). Oh well.

I mentioned that I have 5mg oxycodone for times when nothing else is working.

His voice rising from it’s already tension-filled pitch: “I think that’s a bad idea”.

I point out I’ve been using it for years, that as we’ve learned more about AD I’ve developed an excellent routine that has dramatically reduced my need for pain meds, and I get 30 at a time, and they typically last me 6-10 months, since I prefer to use them as a last resort. I asked given the minimal nature of my use of oxycodone, and the long-term success I’ve had with it, what would be the concern?

He couldn’t elaborate other than to stammer out twice more: “I think that’s a very, very bad idea”, and then finally, “you don’t have that kind of pain”.

Growing more hysterical, he points out he’s probably not going to be able to help me with AD, that he can’t really help me with the pain issue. I remind him my concern is more inflammation and long term risks, that my pain is pretty well under control, I still have pain meds left, and I’m not asking him for any oxycodone, I already have enough… and he breaks in with “BUT YOU WILL!!!”.

Well, possibly I would have. Somewhere down the road. In the 4 months since that appointment, being the stubborn cuss that I am, I think I’ve taken them twice, in spite of having some truly awful, white knuckle days. At that rate, I still have about 9 months supply left in my bottle. Even if I’d been a bit less prideful about the whole thing, it’s unlikely I would have needed a refill for 6 months. I know people with AD who take the amount of oxycodone I use per year several times per month. Given the difficulty of getting my hands on oxycodone in the first place, I don’t tend to be wasteful about using them, since I never know if more will be available in the future.

And I’m not done trying other methods. As I said, oxycodone sucks as far as pain relief goes. It works, but not without a serious price. But of all the things I’ve tried, it’s the safest, and has the least side effects. Usually when I use it, I do so round the clock for a day, and somehow it seems to decrease my perception of pain for weeks afterward. But I still hope for a day when I don’t need it at all.

As infuriating as his assumption that this was blatant drug-seeking was, I was more incensed by his insistence on what kind of pain I do or don’t have. He dismissed everything the current research indicates about AD, he refused to do any looking it up on his own, he didn’t ask me one bit about my pain other than what self-care I used to deal with it, and he admits he knows nothing about AD, and has no intention of learning about it.

So how exactly does he know what kind of pain I do or do not have? Is he psychic? A little birdie told him?

When I tried asking him what kind of pain he thought I had, so I could perhaps use the information to increase my pain-free days, he only replied: “not that kind”.

Perhaps it’s a trendy new medical term.

There are a few (I can count them on one hand) things I think Kaiser does well. I love, love, love their phlebotomists. Billing is certainly easy (although I’d go back to 20 hours a week of fighting insurers to actually get help when I contribute to “cost sharing”). Having everything in one building is a convenience, and can expedite labs and imaging.

None of this can overcome their most glaring failure: the time available for office visits.

A section of this most excellent post, quoting what appears to be a most excellent article, explains why.

Of course for the vast majority of humans out there, a few minutes of face time with a doctor isn’t going to make a bit of difference. They come to the doctor for physicals, immunizations, births, tests, sprains and colds. For those commonplace medical needs, Kaiser is quite acceptable (mostly). In fact my favorite internist shared with me a quip whispered by his colleagues: Kaiser is great… if you’re healthy.

But what if you’re not? Eventually you are a product of attrition, by one method or another.

So what does that leave us? Health coverage for the healthy (Kaiser) and health coverage for the sick (Blue Cross? Medicare? Wealthy Uncle?)?

What happens to affordability, if the healthy are all covered under one cheap system, and the sick under another?

What happens when the premiums for that cheap system become more expensive, and in spite of the…. narrow coverage, can’t compete with more comprehensive coverage?

What happens to the patients caught in the middle? What happens to medical ethics? What happens to the knowledge gained through hundreds of years of medical enlightenment? When medicine is by assembly line, and any one physician sees only a narrow view of any given patient, what happens to our generalists? Our diagnosticians? Who can identify and mange the complex, multi-system diseases and disorders?

My problems with Kaiser go far beyond my personal care. Their model of practice is like a cancer that has spread far beyond it’s original confines. While some may disagree, Wal-Mart certainly has it’s place, things it excels at. But Wal-Mart will never be Macy’s.

Just because some things can be done quickly,  cheaply, efficiently, does that therefore mean we want all measures of efficacy reduced to the lowest common denominator?

Excuuuuuuse me? This is Kaiser, right? Kaiser Permanente? The if we don’t have 20 years of studies conducted by every research institution in the free world then it isn’t true Kaiser Permanente?

Since when did Kaiser (at least here in the Pacific Northwest) become so hostile to research and researchers?

Even the concept of evidenced based medicine worries me. Of course it should be paramount. I certainly don’t want my doctors taking blind stabs in the dark just for the sake of looking busy.

The problem is, we don’t know it all. We have not reached the end of the internet (er, medical research). Not even close. We haven’t even mastered the diseases we’ve been grappling with and funding for decades, let alone those lower on the totem pole.

So what then? What if you have an illness medical science hasn’t been able to research yet? Under evidence based medicine, do we give up? Throw up our hands?

For the most part, that’s been my experience. Symptoms we can’t explain? Oh well. Health problems we can’t name? Too bad. Once I had a diagnosis, it got easier, at least where the major research is conducted. I’m not sure what the difference is between these places and Kaiser, except that in the process of gathering all the evidence for this evidence based medicine, you have to use logic and reason to even get to the point of having something worth researching. Perhaps trial and error, figuring things out, and using similar/related diseases is just second nature.

Why the Kaiser doctors I’ve seen lately see fit to throw up their hands while scoffing at researchers is beyond me.

Of course this tends to be a glaring blind spot in the modern practice of medicine. I’m never sure which shocks me more, the young doctors incorporating old school signs and symptoms into their work, or the doctors who wouldn’t know them if they bit them on the rear, and rely exclusively on lab work to tell them what is or isn’t wrong, and what to do about it. Medicine by the book. Except the book is an infant’s alphabet board book in the face of a universe of complexity that is the human body.

Our knowledge of the human body is still in it’s early stages, and the target of knowing everything we need to know moves further out of reach with each step forward. The more we know, the less we understand. It won’t always be this way, I know, but in the meantime, a lot of people suffer or die on the altar of a slavish devotion to evidence based medicine.

Of course EBM should be the first line of defense. But it can’t be the only weapon in our arsenal.

For the last 8 years we’ve been with Kaiser, my health care has mostly been an endless game of no-care hide and go seek.

Except for a brief, shining period of about 18 months where we had their (insanely expensive) PPO, and had the luxury of going to UCLA and OHSU for my health care. During that time, we figured out my health care issues, spent some time in rehabilitative services for physical and cognitive fallout from the adiposis dolorosa, uncovered some underlying complications which carried their own risk, and figured out work-arounds for the issues that were preventing me from improving my own health. Some of my scarier test results improved (blood pressure, CRP, cholesterol), my function and productivity skyrocketed, and my use of pain meds was almost non-existent (yay!!).

Prior to this Kaiser had spent 5 years denying I even had any underlying health problems.

After 18 months of seamless, integrated team based care, and feeling better and  being more productive than anytime in my adult life, we were deeply in debt, and could no longer afford the PPO. So we went back to Kaiser nearly 2 years ago.

Since then I’ve had several doctors. Or rather, I’ve been to several doctors. The only one that would accept the AD diagnosis (one I have from UCSD, UCLA, OHSU, and the two primary care docs I’ve seen since my diagnosis) tried every convoluted means to keep me from darkening his doorstep after our first transfer of care appointment. Blood pressure creeping up? Let me adjust your meds via email (with no questions or follow up). Trouble sleeping? Let’s try a stream of psychotropics (instead of a sleep clinic referral, in spite of a history of diagnosed sleep disorder). Pain? I know that rehabilitative services helped with that before, but isn’t oxycodone so much more convenient (prescribed via email? Is that even LEGAL?). I know you’ve had tremendous success with Rheumatology before, but how about we try an appointment with a dietician first (??????)?

After a year of this, some new complications lit a fire under my rear, and I decided no matter how much I may wish to forget Kaiser’s existence, I’m still stuck with them. I tried to find a new doctor.

Since then, I’ve seen 5 of them. The responses have been interesting, ranging from “nobody in our department (internal medicine) has a passion or interest in learning about new diseases” (really???), to “I graduated from med school 20 years ago, I don’t know enough about cellular biology to help you” (what does cellular biology have to do with anything?). The last 3 had a surprisingly common response. Each asked why I thought I had AD (I dunno, maybe because many doctors from reputable institutions of medical learning think I do?), what my symptoms were, and if I had ever considered that perhaps I have fibromyalgia, since the (thousands) of lipomas could be a coincidence. Lots of people have them (really?).

Fortunately OHSU used the best tools in their arsenal to rule out fibromyalgia, via the trigger point… thing (damn cognitive issues). Not really a slam dunk. Besides which, occam’s razor? When the patient’s symptoms are a nearly perfect fit for one disorder, and not really much of a fit for another, which makes more sense?

We did manage to get a rheumatology referral from each of these doctors, since rheumatology was where we’d had the most luck figuring out how to remediate some of the more worrisome facets of this disease. The total count now is 4 times rheumatology has bounced back the referral, saying it’s not rheumatological in nature. Interestingly, UCLA and OHSU disagree, but whatever. Let’s not quibble.

They helpfully suggested everything from dermatology to endocrinology, and while they might ultimately play some role in my care, it would be in more of a supporting role. What I’m primarily concerned with is reducing the risk factors that go along with AD, particularly the inflammatory component.

We had some hope that with the layoff, my husband would be able to find a job that got us back to having more choice in our healthcare, but so far, no luck. Not only does the economy stink, but he’s so busy working damn near ’round the clock on the new skeleton crew, he doesn’t have much time to look for a job.

I decided to go research our options for getting insurance on our own, but I can’t wait through a 6 month exclusionary period, DMEs are a part of our life, and I don’t have a spare $30,000 a year to spend on health care.

It’s unlikely that health care reform will bring choice to the likes of me in the neighborhood of $15,000 a year (what I can realistically afford without again teetering on the brink of poverty and homelessness) so that leaves me, on occasion, fantasizing about other means of obtaining some semblance of health care insurance.

Hook a canuck sounds mighty tempting. Welfare? Illegal immigration?

There is something seriously wrong when I even have to joke about such options.

My husband is a solid workhorse in the IT world, can troubleshoot like nobody else I know, and he’s got impeccable references. He did get a recent offer, they raised the salary quite a chunk over their top to get him, but ironically, the health insurance was a deal breaker. But it gives us hope. They were a small company in a small town, and just didn’t have much wiggle room. Unfortunately nor do we. But it proves that there is hope.

I’m trying to hang on to that hope. My most recent go-round with Kaiser was a horrible overreaction to an allergic rash. They did an x-ray, and found one side of my diaphragm abnormally higher than the other. There is an x-ray from 6 months prior showing it to be stable, but when you have had as many medical surprises as I have, it weighs on your mind.

It’s hard not to miss the days when we had the PPO, and we had the luxury of figuring out the problems, and figuring out how to help me mitigate my risk factors. Of course that’s not cheap with an orphan disease, there’s no data, and more trial and error. I know the conventional wisdom is that preventive care really doesn’t pay, but I find that hard to believe. When you can help a patient lower their blood pressure, cholesterol and CRP with nothing more than lifestyle and dietary changes, when you uncover underlying sensitivities that contribute to these and save on meds, treatments and follow up, when the patient requires fewer visits to address the same problems, and can better maintain their own health… I can’t imagine that isn’t cheaper in the long run.

It’s a valid point. I may be just another voice in a vast ocean. However I present a few viewpoints that are underrepresented, and certainly, you don’t see this much of a… medical train wreck all wrapped up into one single, solitary human.

I’m a young cancer survivor, I have a rare disease (also known as an orphan disease), I have a child with autism, and my experience with health care reads like a defensive medicine textbook.

One of the more egregious examples happened 4 years ago. Five years after a PAP showing AGUS, and countless followup PAPs, I finally got an endometrial biopsy, and the course of my life changed. I was diagnosed with cancer.

I was admitted to Kaiser for a hysterectomy on a Friday night. Several hours later I was moved from recovery to a room with 4 beds. Over the course of the 8 days I spent in the hospital, it was full except for the last day. A steady stream of women rotated in and out, in part due to Kaiser’s drive-through mastectomy policy (some women were discharged in as little as 12 hours, others in 24).

For the most part the care was acceptable. Everything was done according to schedule, I had help on and off, and I tried very hard not to have to summon the nurses.

Unfortunately near the end of my stay, I went to the bathroom, and as I began to stand, a gush of fluid poured from my incision. It just continued to leak copious amounts, as I tried to figure out exactly what was going on. The floor in the tiny bathroom was covered in fluid, and I was afraid if I tried to move, I’d slip and fall. I didn’t want to sit back down on the toilet, not sure if it might contaminate my now rather open wound.

I stood there, half squatting, my legs shaking, and decided to pull the emergency pull cord. I hear the reassuring “ding, ding, ding”. I waited for a few minutes, since it typically took the nurses 2–3 minutes to answer the calls of my suitemates. Unfortunately there was no answer. I eventually pushed open the door, and tried yelling, since my room was closest to the nurses station. After yelling for a few minutes, my roommate, recently diagnosed with late stage breast cancer, exhausted from large doses of phenergan, woke and asked me in a groggy voice thick with sleep what was wrong. I told her my incision was leaking and I needed help. She pulled her emergency cord. We heard both chimes alternating, “ding ding, ding ding”.

Still no answer. I can’t hear anything at the nurses station but the call button chiming.

My legs burn with fatigue, and I’m terrified, unable to actually see the incision, not sure what could possibly be happening. I yell out the door asking my neighbor if she can reach her phone. I ask her to press 0, and call the hospital operator. She does, and the call goes out over the PA for a nurse to report to the nurses station.

Slowly I hear the shuffle of feet, and eventually “yeah, yeah, what’s the emergency?”. The bathroom door opens, and the face peering in at me turns a ghastly shade of gray. She screams “oh my god!” and runs into the hall “I need help in here, hurry, hurry!”. A bounty of nurses flood in, supporting me, help me to bed, get me cleaned up and changed, and finally, all is okay.

It would be easy to scapegoat the nurses, but anyone who has lived in Los Angeles knows that Kaiser nurses have not had an easy ride. Statistically, outcomes like mine are rare, it likely wasn’t the first thing in the mind of the nurses when they heard the call. They certainly were wonderful to me when they realized the extent of the problem. It’s not news that hospitals are understaffed.

Unfortunately, the evolution of health care delivery, and now the battle over health care reform has painted the patient as the enemy of good care, overusing resources, demanding drugs, not following instructions, suing frivolously. This culture of blaming the patient seeps out in the most unexpected ways. Health care providers don’t expect the worst, because the worst is rare. This leads to the worst kind of waste of all: the missed opportunity.

A lot of verbiage gets thrown around about partnering and teaming and patients being involved in their care. Until they are seen as equal partners, opportunities will continue to be missed. Money will continue to be wasted. Cancer patients with slam-dunk signs will continue to be misdiagnosed in spite of advocating for themselves. People with rare diseases and conditions will continue to wait decades to be treated, suffering needlessly, and developing complications.

This is the true reform of health care. Effective reform will remain elusive, until patients are seen as a valuable and important participant of the health care team.