This is something that gets passed around communities of folks with rare/chronic diseases. It’s well worth the read, since most of us will cross paths with someone with a chronic illness at some point. I can’t think of a better analogy. Click on the link that says “click here to read The Spoon Theory”. It’s a PDF, and… I’m not that tech savvy.

So it appears yours truly may have crossed paths with a certain infamous virus. I’m not sure if it’s the chronic pain/chronic illness or if it’s just the most hideous virus known to man, but wow, I’ve never met a level of pain that sent me running to the emergency room, but after 8 hours waiting for Killsya Permanently to call me back and prescribe tamiflu, and hopefully something, ANYTHING (that works) for the pain, since max doses of tylenol and motrin were lasting 30 minutes tops…. I had met my match, and spent enough hours sleeping (which is all I was capable of) in 30 minute stretches, moaning all the while.

It wasn’t just the pain, once I hit the threshold of every single “if you have this symptom, you might want to go to the ED” combined with pain that would make birthing quadruplets naturally, simultaneously (yes, REALLY) seem like a pleasant way to spend an afternoon….Thankfully 2 doses of Tamiflu on board, and a couple of doses of various pain meds, I got the pain back under control to the point where my usual self care is enough. Battling a migraine from being kept off my HCTZ, but that will resolve once the HCTZ is working again. Meanwhile dark rooms and Well-Patch are my best friends.

Now if anyone has a remedy other than antibiotics, salt water gargles, and citrus that can make tonsils like these look like these, I’d be grateful.

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.

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?

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.

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.

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.

I found this post from a New York Times blog.

Having just been through a layoff, our personal situation is to complex to use as an estimate, so we’ll go with a 4 person family, and a round figure of $100,000, as an example.

So by my estimation, if the above family fell into any category that required more than an annual physical (chronic health conditions, familial risk factors, one or more young children, reproductive age, middle age, seniors not on Medicare) they’re in for a bare minimum of $15,000 per year in health care costs.

So doing some quick figuring of yearly expenditures in my head:

Housing: $33,000

Debt: $7,000

Taxes: $20,000

Health Care: $15,000

We’re up to $75,000, and not one penny spent on savings, college funds, retirement, food, clothing, educational expenses, child care or luxuries.

Let’s try this again using one of our underrepresented orphans as an example.

Payments on prior medical debt of $40,000: $12,000

Housing: $25,000

Cost of managing ADLs insurance coverage doesn’t help with: $6,000

Cost of sporadic services for special needs child: $30,000+

Cost of Health Care (including out of network care since in network doctors rarely treat orphans/unicorns): $40,000+

Oh, you’re bust! Thanks for playing, better luck next time. I’ve heard health care is free when you’re dead. Pretty rough for that special needs child of yours, but he’ll get used to your being gone. Maybe.

I’m terribly curious who Sen. Baucus sat down with when he created this steaming pile of excrement. I envision the insurance industry on one side, rubbing their hands like Potter in the back room with Uncle Billy’s money stashed under his blankie, all the while grumbling about how put upon they are by the Evil Mr. Baucus. On the other side is the GOP, playing nice and nodding along, until the The Moment when the triumphant Senator unveils his plan to a chorus of crickets. Across the table is Beelzebub himself mentoring the Senator in the finer points of sleeping with the enemy.

The only thing funnier than the above image is Sen. Baucus’s proposed solution to the diseased state of health care in America.

I wish I could muster a chuckle thinking about the implications of this boondoggle. Instead I’m choking back tears.

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.