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As is confession

October 11, 2009 by orphanus

In spite of having a file of posts stacked up like planes above O’Hare, there was a notable silence around these parts last week.

I awoke Friday morning, retreated to my recliner with it’s comforting heat and massage as is my ritual, to find this article waiting to fill my world with sunshine.

Six hours later I was on a train with my eldest son bound for Washington D.C., with visions of pot-stirring dancing in my head.

Turns out you can’t really do any of that in our Nation’s Capital anymore.

Huh.

Thanks to Organizing for America I managed to connect with some wonderful and highly motivated individuals kicking insurance reform rear. Not sure I did anything terribly noteworthy, certainly not anything I couldn’t have done at home. But I felt strongly that I needed to be here in the middle of things to make a difference.

I’ll be heading home soon, not nearly as triumphant as when I arrived, but sure in the knowledge that however ill-advised my trip may have been, I’ve lived my ethics to the best of my abilities, and can lay my head on the pillow each night with a clear conscience.

Today I’m taking a break from my efforts, and also trying to recover a bit. In reading some of my fellow chronic disease bloggers, I came across this post which hit home for me, since the rage and fury only blocks the awareness of pain for so long, particularly when one (who should know better) takes advantage of that false sense of security by pushing themselves too far. Particularly when one filled with all that sturm und drang leaves behind their pain medication.

Oops.

This is perhaps the cruelest aspect of chronic disease/chronic pain.

People see what you do, not what you can’t do, since that is mostly an internal struggle. So they see that you shop for groceries, or clothes, or go to church, or volunteer, and they don’t have any real understanding of the other side of that coin, the days, weeks, months you are incapacitated, the activities already banished from your calendar forever, the people you’ve let down, those who couldn’t handle the price to be paid for chronic disease. After all, who can blame them? If I could leave this all behind, I would too. It’s a luxury I don’t have, so I have all the more compassion for those who can, and do. Nobody would chose this.

Even your closest loved ones, when they’re feeling tired, put upon, and weary will forget the cost to pushing yourself too far. Chronic disease is really pushing the envelope on the old “in sickness and in health” meter.

For that matter, my little junket here proves I myself can delude my way into thinking I can still contribute just like the rest of the world. As Randy Pausch reportedly said, even the injured lion still wants to roar.

Which is not to say I don’t have something to add, some way to be effective, but it’s important to remember, I can’t do it the way I used to. This is both a cause for consternation, but also an opportunity, a chance to learn new ways of giving back.

I wish, for the sake of our loved ones if not for ourselves that society could be a bit more supportive and accepting of the needs of people with chronic diseases. I’m just not sure how we can make that happen here, in this country of sprinters. We’re a culture of hares, and those of us with chronic diseases are like the proverbial tortoise, with an arthritic leg that acts up on humid days.

I look around my community of fighters, and see such impressive courage, strength, gumption…. I wonder what we miss by not working harder to bring these people into the mainstream of American life.

I suppose I’ll have plenty of time to contemplate on the long ride home.

Posted in health care, life after....., the patient experience | Leave a Comment »

Laughter is good for the soul

October 11, 2009 by orphanus

A friend sent me a link. It made me smile, which is always better than the alternative.

Posted in All in good fun | Leave a Comment »

The research supremacy myth

October 9, 2009 by orphanus

One of the reasons cited for clinging to a bloated, dying, inefficient system of health care delivery, is the idea we lead the world in innovation.

Well, there’s something to that, we Americans have churned out an impressive stream of life-changing innovations in our time.

Medicine and pharmacology is not our greatest strength.

As much as we might like to think the health care world revolves around our corner of the planet, other countries do in fact excel.

It’s easy for us to think because we come up with some amazing, blockbuster drugs, that we’re the only game in town, and yet a quick perusal of pubmed, or a simple google search reveal plenty of movers and shakers proudly waving a number of different flags.

An interesting irony in this whole debate about rationing care or not is that research money is hard to come by. Yet since most insurers only pay for proven treatments, and you have to study treatments for them to be proven, it leaves us in a quandary.

Countries that have achieved universal coverage through whatever means available do not spend their precious health care dollars on testing and treatment. The entire patient population is available to be their study subject if willing, and their care is paid for.

In this way, not only do their citizens enjoy access to care most Americans will never experience, but they can more quickly recognize, treat, and adapt when new medical problems arise or are uncovered.

Right now most public funding for research is funneled toward the big guns, cancer, heart disease, and little bits to other medical issues. There are thousands upon thousands of other diseases.

How do we research them?

Simple. We don’t.

So by putting all our eggs in one basket, are we the medical rock stars? Well, if you mean we really hit one out of the park on occasion, yes.

If you mean do we have the…. medical infrastructure to understand the depth and breadth of human disease, and the understanding that comes from seeing the forest AND the trees, no. Emphatically, indubitably, no.

By that measure, and the related measures of infant mortality, longevity, and preventable deaths, nearly every country you can think to name cleans our collective medical clock.

Posted in Politics, health care, research | Leave a Comment »

Why should I pay?

October 8, 2009 by orphanus

I’m often asked by conservatives why they should pay for someone else’s health care.

It’s a valid question. I certainly am no believer in free lunch. Let me see if I can explain.

The most important issue to understand is, if you have health insurance, see a doctor, pay taxes, or work, you’re already paying for someone else’s health care.

If you pay property taxes, you’re paying for county health programs.

If you work, you’re paying income taxes, which go to any number of programs, including the VA, Medicare, Medi-caid, and so on.

If you see a doctor, you may be paying more so the doctor can afford to provide care to someone who can’t. Same goes for hospitals. Last I checked there aren’t money fairies who fly around balancing the books of health care providers who see indigent patients. Hospitals don’t have money trees where they just go collect a harvest every time a patient can’t pay.

If you have insurance, well that’s the Granddaddy of paying for someone else’s care. Most people use far less than they pay in. The problem is, we don’t know until it’s too late if we’ll suddenly need insurance, which is why most people prefer to have it, because you are effectively penalized if you become a heavy user, and aren’t covered.

The problem is, if people don’t have access to quality health care, then they don’t get the care they need until it’s a crisis. Purchasing during a crisis is never the best time to purchase. You don’t have the time or resources to adequately evaluate the options, and usually spend more than you would have otherwise. This is the crux of the problem with American health care, too much of the care delivered is in the most expensive setting, not the least. I don’t know about you, but if I’m going to be paying for someone else’s health care, I’d really rather pay less than we’re paying now, and get better quality to boot. I’d also like to save money by treating those problems when they’re small, and cheaper to treat.

How about the moral issue? I agree there’s a moral argument to be made for living within your means. I don’t indulge in luxuries I can’t afford, that’s irresponsible.  There is a difference however in saying I shouldn’t have a luxurious house, and I should have no house at all. The first has implications only for me, a cost only to me, the latter has greater implications for society. While we may not want to help those we deem less deserving, we certainly, according to my understanding of the Bible, have an obligation to do for those who can’t do for themselves, whether it’s widows, orphans, the elderly, the disabled, or the poor. I seem to remember a few Bible verses to this effect, one in particular along the lines of; “what you have done for the least of me you have also done for me”.

Let’s explore the social cost. Imagine a world where any of these people did not have access to quality health care, and thus did not live long enough to make an impact on the world:

Stephen Hawking, Lance Armstrong, Randy Pausch (this one brings me to tears), Christopher Reeve, Sam Donaldson, Sue Myrick, John McCain, Steve Jobs. There are more, but my brain is not willing to cooperate today, so I’ll leave it there. I think I made the point.

What about the personal cost? We humans like to think we’re immune to life’s bitter moments, but none of us are exempt from standing in front of the big dartboard we call risk. My personal history is a perfect example. None of my Grandparents had cancer. My father and all his siblings did. My Mother died of it far too young. Her brother has thus far avoided that problem, but his daughter has not. Lots of people look at their family history and think they have nothing to worry about. Genetic mutations, for cancer, and other diseases, can arise spontaneously. What if it’s your wife, your child, your brother or sister, yourself? If you’re reading this, and you are against a public option, or universal coverage (by whatever means we cobble that together) I want you to sit and think: you’re in your doctor’s office, and you’re being told you have cancer. It’s terminal. If you could have afforded to come in back when those first symptoms had started, we might have been able to save you (if you had the money or insurance to pay hundreds of thousands of dollars to save your life). Think about going home, and telling your loved ones. Think of what they’ll go through. Think of your spouse and children surviving without you. Think about the look on your children’s faces as you tell them.

I’ve been there. It sucks. Thankfully I lived.

If I had one wish, it would be that we could all see that when it comes to health care, we’re all in this together, whether we chose to be, or not. We must work together, discuss, brainstorm, plan, evaluate, together, right, left, liberal, conservative. We can’t talk about rhetoric, or stories or lies. We can’t talk about fears, or political pablum. We have to talk about realities, facts, data, hard, measurable, quantifiable evidence.

We have to talk about the truth.

We have to plan our future, lest it be planned for us.

Posted in Politics, health care | 4 Comments »

Putting the “life” in pro-life

October 6, 2009 by orphanus

One issue that has me completely confused, is the seeming overlap between people who would identify themselves as conservatives, most of whom seem to be pro-life, and yet seem to be anti-health care reform.

I wish I could find it now, but a prior linksurfing trip wound me up at some piece along the lines of; I don’t buy more car or house than I can afford, and health care should be the same. It’s a sentiment I’ve seen repeated often as this debate rages on.

I am the first to admit I’m not the brightest bulb in the box, but I am missing the connection between the two political ideologies.

How can one be pro-life, and pro dying for lack of health care? Do people who believe this think only morally bankrupt people die for lack of adequate health insurance? Do they not know how many children die for this very reason? How about infants? When is a person innocent enough, young enough, or nomable enough to warrant the protection of the pro-lifers?

I don’t get it.

If you get it, please explain.

Posted in Politics, health care | Leave a Comment »

Medicare for many

October 2, 2009 by orphanus

Reading about the current proposals floating around out there, my heart sank. I spent much of last night crying. It’s clear we’re not going to get any health care reform legislation that is going to help people with orphan diseases, or remove the cost of their care from the national budget.

Most likely families like mine would be exempted from buying coverage, because we have serious, chronic, progressive diseases, and so our premiums are insanely high. We can’t go through any insurer that restricts access to physicians, because there may be 2-3 experts in the world who know how to diagnose and treat us.

The problem that Congress and the President won’t tell you is, we’re the expensive uninsured. Sure, getting the vast majority of the un/underinsured will save some dough, since providers and hospitals will no longer be eating the cost, but most of those people don’t use a whole lot of health care. Those of us with orphan diseases can use 100 times what your average family does per year, and you, my dear taxpayer, are paying for it one way or another.

There’s millions of us. You do the math.

My friends with Medicare get most of their orphan disease expenses covered, and those who connect with experts and advocates via patient support networks and use their assistance to file their appeal are usually successful. I can tell you that’s rare with private insurance. After a year and a half with no access to care under the HMO we could afford, impossible through an HMO.

How do we cover these people?

How about allowing people with chronic diseases who can’t get insurance any other way to buy into Medicare?

Medicare can provide care more cheaply than any insurer, and it’s more comprehensive than most. Certainly having people buy into Medicare at the 8% cap that’s been suggested for families buying other insurance would have them paying for a chunk of their care at a more affordable rate, and would allow them access to care that would keep them healthier (and less a drain on the system) for longer. An 8% premium would be tough, but many of us have been paying out of pocket so long, that even if it’s more than we were spending, we’d gratefully pay it in order to know we’re covered if the worst happens (which it inevitably does with chronic diseases).

I can’t imagine what objections anyone could have for this. It would save taxpayers money in the long run. If there’s one group for whom preventive care is emphatically cost effective, it’s people with progressive diseases. It’s such a small slice of the US, that it can’t feasibly be considered to be a back door to socialized medicine, any more than disability or Medicare itself. Similarly it won’t be an unfair competitive advantage against insurers. In fact most insurers would heave a huge sigh of relief not only to have more insured people, but not to have to insure us. We’d be paying into this care, rather than fighting for disability coverage, therefore we can continue to work, and be tax-paying citizens ourselves. In fact some who otherwise must apply for disability could be treated early enough in their diseases that continuing to work is a feasible option.

How about Medicare for many?

Posted in Politics, health care, the patient experience | 1 Comment »

All you can eat

October 1, 2009 by orphanus

Another late night Google adventure and too much link surfing led me to an interesting website tackling the health care issue from a view quite different from mine.

This post is an excellent explanation of one area of waste in health care.

Managed care sought to make a profit on cheap care. The only way to entice people to join managed care was to make it so very cheap that people willingly locked themselves into a very narrow selection of providers.

I remember when I was young, and most Kaiser plans had a $5 co pay for office visits and prescriptions. You couldn’t actually get in to see anyone, but at least it was cheap.

Over time, people did come to expect cheap care. Traditional indemnity plans had to try to keep up, but didn’t have the same built-in cost controls (direct control of a gatekeeper, denial of care, capitation) and so started down the same morally bankrupt path of using any method they could dream up to deny access to care, or refuse coverage so they could bring their costs in line with the managed care model.

Utilization of medical services appears to the medical consumer’s eye to have increased substantially. I lay some of the blame at the feet of ambulance chasers. Once upon a time, you used to be able to call the on call doctor, and see if you really needed that trip to the ED. You used to be able to call the ED even. Heck, used to be advice nurses could actually give, you know, advice. In my experience, even Kaiser advice nurses are saying “go to the ED” these days for things that probably aren’t emergencies.

The problem is cheap ED visits have dramatically increased the use of the ED. Sprains are not emergencies. The common cold is not an emergency. Insect bites are not emergencies. These can all look like something more serious though, and since we can’t be sure, off to the ED people go, to wait hours, spend a good chunk of change, all for the sake of defensive medicine.

We’re becoming conditioned to over-utilization of the most expensive care.

I’ve advocated here before for major hospital EDs to have a round the clock urgent care, with a common triage. At least then we could funnel urgent cases to a less costly setting, and improve delivery of care to those truly experiencing an emergency, without any further risk. There are some interesting models that could also be used in that instance, such as allowing patients who are comfortable with choosing urgent care to call to get their name on a list, and when they are so many patients away from being seen, be notified so they can head to the urgent care.

If there’s one thing the above mentioned blog post gets right (in spite of having the facts wrong), is all you can eat care is a disaster. Whether it’s insurance care, or single-payer, the cautionary tales out there tell us that patients are going to have to assume more responsibility for both their premiums, and day to day costs.

Preventive care (physicals, well child checks, and immunizations) need to be incentivized, since they have greater implications beyond just the care delivered, and are of minor expense. However other routine costs shouldn’t be dirt cheap. Chronic disease care shouldn’t be cheap, but out of pocket needs to be capped, or the uneven access to care when money runs out will negate some of the benefit of all that chronic disease management. Catastrophic care similarly should cost, but should not bankrupt a person.

The candy in the dish can’t be free. If there is a real cost, an uncomfortable but not painful or deadly cost, patients will be conditioned to be wiser users of health care resources, be more informed medical consumers, and be more motivated to get and stay healthy to the degree they are able to do so.

We need better tools to help us succeed. We need increased regulatory oversight and enforcement so that insurers can not make promises they have no intention of keeping, so that patients, at the point they are least able to advocate for themselves aren’t left to the wolves. We as patients need an objective means to find and use quality health care, and evaluate comparative costs.

Over the years patients have been encouraged to take more responsibility for their health care. We know that providing education can change outcomes. Now is the time to provide the quantity and quality of information that will help patients make decisions about their own health, their own care. Now is the time for patients to understand there is no free lunch.

That said, everyone needs to understand that starvation isn’t an acceptable option either.

Posted in Politics, health care | 1 Comment »

The whys and hows of self-care.

September 29, 2009 by orphanus

If there is one thing we folks with chronic/rare diseases do well it’s self care. Sometimes it’s been the only kind of care we had.

I like making lists of self care things that work. In part because when I need them, my brain is usually not capable of recalling them, in part because I want them available when others are in need.

So perhaps a small break from the agitating and soap box standing, and a little something inspiring to share.

Wandering the magazine section of Big Box Bookstore yesterday, looking for inspiration and information on how to not fail miserably at being a Mom to school aged kids, I came across this magazine called Artful Blogger.

Of course it piqued my interest, since I’m not artful, and I’m most assuredly a neophyte blogger.

I read this fantastic article, and a portion of a blog post that really hit home for me. I have this raging perfectionist streak, and with the cognitive issues, I’m even more stubborn than usual (which is saying something).

It’s a principle in theory I live by, but in practice…. sometimes I stumble a bit. I’m eternally grateful for the reminder, so artfully written. :)

It’s the entry for Feb. 18th. Go read it. It’s well worth the time.

Posted in life after....., the patient experience | Leave a Comment »

Why health care co-ops are not the answer

September 29, 2009 by orphanus

I am a strong proponent of a public option. My preference, for feasibility and affordability, would be a “Medicare for All” by choice, with a few caveats: ERISA needs reforming, Medicare reimbursement rates need adjusting to be more reasonable, and less punitive towards states that use health care funds wisely, and users are going to have to get used to taking a bigger bite of the cost sharing pie. Preventive care needs to be free or dirt cheap. Everything else needs to have a bigger co-pay, particularly emergency care. Perhaps we could spur the creation of Urgent care facilities with EDs, sharing a common triage. I’ve been to a hospital that does this, and the cost savings all the way around are dramatic. It keeps the sprained ankles, stomach flu, and URI’s out of the ED.

I am flummoxed by the dualing, yet completely incompatible arguments that Medicare for All as an option would eliminate the private insurance industry, or be a back door to single payer as the only option, and that a public option could not possibly be done well, since the government does nothing right (last I checked, Medicare recipients were thrilled with Medicare, except Part D).

Which is it? Is the public option likely to be another mishandled political boondoggle, providing nothing but terrible, substandard healthcare? Or is it going to be so wonderful that it single-handedly tanks the insurance industry, and launches the US of A on a trajectory toward communism?

Both can not be true.

What I am absolutely clear on, is co-ops are nothing but another method to take money from hard-working Americans, and give as little back in return as possible.

Just for giggles, google “Group Health wholy-owned subsidiary Kaiser Permanente”. Read. Keep reading. Read more.

We were members of Group Health briefly. Two months prior I had an emergency appendectomy. I had a two year old. We moved cross country. In the process of the move, I developed this nagging abdominal pain, not nearly as severe as the pain of the appy, but similar, and enough that it would make me break out in a cold sweat, and lasted hours, sometimes days.

After this happened several times, we went to see our new doctor at Group Health. In addition to the horrible pain, my whole family had a respiratory illness, and I was having asthma symptoms.

We were all seen at the same time. The doctor handled my issues first. He couldn’t hear any wheezing (I’ve never in my life wheezed, at least not until I’ve had a couple of rounds of albuterol and am moving enough air to wheeze), said antibiotics don’t cure viruses (without testing to see if we ultimately had one, but I’ll get to that later), and asked me about the abdominal pain.

I explained it started a couple of weeks after my appendectomy. He said I was acting like a hypnochondriac and I should stop whining. I had to grab my husband’s sleeve as he jumped to his feet.

A day later I was in the ED in severe respiratory distress with a particularly nasty and widespread bacterial pneumonia.

It wasn’t until more than a year later that I learned the reason for the recurrent abdominal pain. I had an abdominal hernia the size of a dinner plate. An incisional hernia. From my appendectomy.

Not only was it the size of a dinner plate, it was large, ragged, with little bits still clinging together, where intestines were getting stuck. It went un-repaired for some years, due to another move and back to back pregnancies. It ultimately was repaired during my hysterectomy, and the surgeon was none-too pleased with the complexity of the repair necessitated by the needless delay in treatment.

This was the first of a slew of negative interactions with Group Health. We had the option to change to Virginia Mason under the same plan, and we did, within a few short months. I can’t say the primary care doctor I saw at Virginia Mason was much better. In fact, she was awful, but the specialists we saw were incredible. I can’t place all the blame for the missed hernia at Group Health’s feet, my doctor at Virginia Mason missed it too (another post for another day). So did two Seattle area hospitals. In fact, the doctor who did catch it did so quite by accident, when I went to the ED with not only the abdominal pain, but also a 104 degree fever. He ordered a CT, and found the hernia. In spite of my reporting the pain began shortly after the appendectomy, not one doctor either looked at, or palpated my abdomen. Not one. Save the surgeon I was referred to after the fact to repair the defect (weeks before we were scheduled to move, damnit). He felt around, had me lie back and lift my head, and sure enough, there’s a ginormous hernia! Lookie there! More than a year of absolutely horrendous pain and suffering, needlessly. Actually, more than that, since it took me 6 years to get it repaired.

Some might point out that others missed the hernia too. Absolutely correct. However Group Health has the unique distinction of actually telling me to my face I was either lying, or a walking psychological pathology. They also had the only 0% accuracy rating I’ve ever experienced. Even Kaiser is right as often as a stopped clock.

It takes a concerted effort to be so bad you make Kaiser look good.

While fee for service as it stands now has no checks and balances, neither does capitation. Personally, I’d rather err on the side of doing too much (within reason) than doing too little (within reason). Both outcomes are known only in hindsight, but if I have to choose one, I choose the one that saves the lives that can be saved. Incentivizing the other guarantees outcomes we’d rather not increase.

Posted in Politics, health care, the patient experience | Leave a Comment »

“….You don’t have that kind of pain!”

September 27, 2009 by orphanus

As a person dealing with chronic pain, the debate over pain medication drives me nuts.

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.

Posted in Kaiser Permanente, health care, the patient experience | 2 Comments »

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