LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Saturday, July 30, 2011

No good deed goes unpunished

So what was the “official” reason? I asked, stoking thin air with the middle and index fingers of both my hands to denote the quotation marks.

“I guess I endangered a patient’s life by sending her to see a cardiologist,” snorted Debbie, sarcastically, her face still hard with anger, dark eyes nearly blazing.

There was a moment of silence between us while her words soaked in.

Then, despite the worry of being unemployed in the worst economy of our lifetimes, despite the unjust nature of working in medicine, despite small personalities with big titles—the ridiculousness of the whole thing stuck us and we began to laugh.

Yep. Yesterday my wife got fired. Her unforgivable sin: She put a patient’s welfare before the almighty dollar; and in modern American health care, you might as well throw yourself under a metaphorical bus.

Here’s what happened: Last week a regular patient came into the private practice medical clinic where Debs worked until yesterday. This woman was having surgery in a little over a week, and at the pre-op appointment the surgeon had detected an enlarged heart. He told her he’d feel better if she had a visit with a cardiologist before the cut her open.

The patient wanted to know if she could get a referral. Debbie knew that, unless you are on a gurney being unloaded from an ambulance, the odds of getting in to see a cardiologist in less than a week are a zillion-to-one. Still, she told the patient she see what she could do. Debs called the cardiologist’s people who normally would have laughed until they threw up. However, apparently God loves this woman. The cardiologist’s office had just received a cancellation. Debbie’s patient could have it, but they needed a referral ASAP.

Debbie booked the appointment for the patient, filled out all the paper work and took it to one of her providers and explained what was up: regular patient, surgery in a week, surgeon would be happier if patient saw cardiologist, miracle of miracles, we can get her in, but ya’ gotta sign here. The provider signed the document and Debs didn’t give it another thought. There were other medical brush fires to put out. If she’d been in the military she probably would’ve been given a medal for showing initiative.

Or maybe not. But she should’ve been.

Now, Debbie worked at a satellite office. The main office is over in Santa Fe, about 75 miles away. Every couple of months there’s a staff meeting at the main office. Thursday the boss called Debbie and asked her to come in an hour early so they could “sit down and discuss some things.” Debbie knew this couldn’t be good news, but didn’t expect to be asked to drive 150 miles to be handed a termination letter and curtly told to clean out her desk by day’s end. But that’s what happened.

Of course I read the letter and the “official” reason she was fired was acting beyond her scope of practice, which is nonsense. Filling out referrals was part of her job, as is scheduling patients with other practices. It’s not like she forged a doc’s signature on the fucking form.

Debbie spent the rest of the day and half of the night trying to re-play the brief conversation she’d with her ex-boss, wishing her mind was a tape recorder. Eventually scraps of the conversation came together and everything made sense. Well, made sense when you add in the fact that her ex-boss is an erratic crazy woman obsessed with titles and licenses and keeping people in pre-defined boxes. Oh. And obsessed with money, too.

Referrals are typically given at an office visit. With time pressing, there was no time to get the woman on the schedule. Several days after all this happened some bean counter realized the practice had missed an opportunity to make a buck.

Now remember that Debbie didn’t actually make the referral. She didn’t sign it. She just showed initiative and got everything ready. The provider could’ve said, screw this, I need to see the patient. Instead the provider chose to sign the document, presumably based on the information Debbie had gathered from the patient. And let’s face it, referrals are harmless. It’s not like the patient came in and said, “Hey this other doctor said I should have a prescription for Oxycontin.”

Referrals are pretty much handed out like business cards. In fact, they really only exist because of insurance. Otherwise, if you wanted to see a cardiologist, endocrinologist, dermatologist, urologist, ophthalmologist, or any other ologist, you’d could just pick up the phone and made an appointment yourself. In fact, many people whose insurance don’t require referrals do just that.

But, you can’t fire a provider for making that kind of mistake. That would lose too much money in the long run. But if you are a shorted-sited, money obsessed, crazy, paranoid person who wants to keep all the staff in a state of fear, a medical assistant makes a great sacrificial lamb.

So what did we do? Well, my family has a good tradition for times like this. We celebrate both victories and disasters. So Debbie, Rio, and I went out to dinner at the Steaksmith, the same place we celebrated my writing awards a few posts ago. Rio had a hard time wrapping his brain around why we’d celebrate something bad. We celebrate bad things to remove their sting, I told him, to show that our spirits can’t be conquered. Rio still didn’t get it, but ordered the scallops anyway. He’s not the type to look a gift horse in the mouth.

Then our drinks came. Roy Rodgers for Rio. Kula and Cream for Debs. Half-liter of cab for me. We raised our glasses. F’em. F’em all, I said. “F’em,” repeated Debbie, and clinked my glass.

“What’s ‘F’em’ mean?” asked Rio. I bent over and whispered the answer in his ear, with the added explanation that if we were at home there’s be no need to censor ourselves, but that in public places it sometimes pays to be circumspect.

“Ah,” said Rio, “F’em all indeed.” And he clinked his glass against mine.

Then he added, “I like our family’s tradition of celebrating disasters.”

Thursday, July 14, 2011

The times they are a-changin’

The gestation time of a baby mouse is 19 days.

The gestation time of a rabbit is 33 days.

Lions take 108 days.

Beavers 122.

It takes 187 days to make a baboon, and 245 days for a moose. That’s the real kind. In the woods with antlers and all. Not a chocolate mousse.

The gestation time for a human baby is 276 days.

Giraffes take longer at 425 days.

Sperm wales take 535 days.

Elephants 630 days.

And lastly, at a whopping 785 days, we now know the gestation time of trust between diabetes social media and big pharma.* It was a long gestation, but it was sure worth the wait.

Yeah. I’m here to tell you about the recent summit between Roche and us. I’m probably the last to weigh in on this year’s summit, which is the third. I waited a bit ‘cause I was crazed at work. And because I had to catch up on my columns. And because I was finishing a book. Oh, and also, of course, because I’m lazy about blogging. But mainly I waited because I needed to absorb it all.

Because this year it was different.

This year something new and wonderful happened. And I’m still trying to form the words to explain it to you.

Now, there’s really no point in my rehashing the details of the summit itself. Who spoke to us and what they said. For God’s sake, it was twittered and tweeted, tubed and twitter-pated in real time by a dozen of my younger, more diligent, and more digitally enabled colleagues. You probably saw me—odd man out with a pen and paper (an analog substance made from trees)—in one of Manny’s live video feeds, while everyone else hunched behind their lap tops and iPads. If you did, you might have even noticed I wasn’t taking many notes either.

Real time reporting is awesome stuff. But not my thing. I was focused on what was going on under the surface. Something that had to be felt more than recorded. Internalized more than broadcast. My goal was to provide analysis and commentary; another respectable journalistic tradition that we don’t see too much of in our rush-rush real-time online world. It’s hard to report, either in real time or after the fact, the vibe, the tone, the energy in the air. What it felt like to be there. But to me, this was the story I was drawn to, because this year it felt different from the start. This year there was a newfound sense of unity and purpose. Both between ourselves, and between us and our hosts.

In their long quest to discover a safe way to engage with the Diabetes Online Community, Roche has worked with a core group of us from the DOC as ambassadors. But in engaging with us for their own purposes, a powerful unanticipated consequence took place. It caused us to engage with each other too; and that caused us to change.

As crazy as it sounds, I guess I’m one of the DOC’s “founders.” And over the last few years I’ve watched the DOC go from isolated and lonely individuals reaching out to each other in the dark, wanting nothing more than to know they aren’t in this shit all alone; to being a loose confederation of individuals who sometimes got along… and sometimes didn’t; to forming up into a powerful and influential group perched on the cusp being able to do more than just provide support or speak for our kind—but to be the tip of the spear for change.

And that was the electricity in the air this year. The powerful realization that we can spark change. Engineer it. Create it, even.

Don’t get me wrong, I don’t think that Roche created a monster that will bite the hand that delivered it. Going forward, I felt that there was a realization in the air that it’s OK to have partners in our fights. That the enemy of my enemy is my friend. Yes, the big pharma companies make money on us, but these companies are made of living, breathing human beings that do care about us. In fact, many of them are us. dFolk are everywhere. There will always be a thin barrier between us. We will always watch our pharma allies with a degree of suspicion, and they will always need to be on heightened alert when we’re in the room; but the pure unadulterated distrust that marked our first meeting was gone and replaced with mutual respect, some trust, and dare I say it? Affection?

I liked the people from Roche from the start. And I confess that I’m now beginning to like the organization itself too. Yes, we have separate core goals. Their goal is profits. Our goal is to do more than survive. We want to thrive. But it seems to me like the roads we are both walking on might be going the same direction. Why not walk together?

And depending on the purpose of our walk (are we just traveling, or are we marching?), it might do us good to have even more people by our side. Strength in numbers. I neglected to “report” on it before now, but earlier this year the diabetes division of Medtronic hosted a Roche-like summit of their own. It didn’t have the electricity of this year’s Roche summit, but it went very much better than the first Roche summit; proof that Roche’s hard, patient work is paving the way for others who want to (carefully) follow in their footsteps. I found that like Roche, the Med-T folks were genuine and honest in their dealings with us. They came to the table, well actually they brought us to their table, to open a dialogue. They asked and listened. They answered questions as best they could.

To be fair, we barraged them with questions they couldn’t legally answer. We all wanted to know what was on the drawing board, something they simply can’t tell us with about paying a heavy price with the government. It’s illegal to talk about devices before they are approved, as it smacks of guerrilla marketing against devices already in the market place. And that’s a law with teeth. I’m sure Med-T has wonderful things hidden in the basement. On one hand I think many of them wished they could tell us what’s coming down the pike, but they are playing by the rules (the fucking boy scouts).

Recently, other companies who want to engage with us have not had it so easy; but maybe they can learn. I have it on good authority that after stepping on their own dicks trying to enter the social media space recently, a small pharma company who I’ll let go nameless is regrouping and going about it right: asking permission to enter our space; asking questions about how we can engage together with us in areas of common ground and common good; and listening to us. They initially made the mistake of talk first, ask questions later. They were not well received. Their re-boot will be a series of mini-summits via web conferencing, as they don’t have the budget for the real world approach the bigger players prefer. I hope the community gives them a second chance.

But now we have some decisions to make. Now that we are unified, strong, and powerful; we must decide our next steps carefully. Do we move our influence off-line? Do we rally around the IDF and push for greater global outrage over diabetes? Do we dive into the health reform fray, and protect ourselves from unintended consequences of legislation being written by people who’ve never wanted for good care? Do we knock down the Berlin Wall of the FDA and push for intelligent (and speedier) approval of the devices we need to maximize our health?

At last we are as one. Now we must decide where to go from here. Together.

*The exact number of days between the original announcement of the first Roche Summit in Diabetes Mine and the first night of the third summit.

Tuesday, July 12, 2011

Sir Writes-a-lot

The cat’s out of the bag now. Or maybe I should say the dragon is out of its lair? Yep. My latest title is up at Red Blood Cell Books. I’ve been pretty vague about it over the last couple of months, just telling people that it’s a sequel to Taming the Tiger.

But now that pre-publication orders are being accepted—hey, at half off, no less—and now that the cover art and a brief description of the title are online (and I’m doing the dutiful modern author thing by “tweeting” it and “facebooking” the news), I might as well talk about it here too.

The new book is called:

Wait a sec, knights in shining armor follow tigers, how exactly? Sorry. I’ve upscaled diabetes to a 90 foot long dragon that breathes fire, has 14-inch spike-like fangs and claws stronger than titanium. Well, diabetes is a progressive disease, after all.

New information, new analogy, that’s all. No tigers this time. It’s only a Tiger book in that it has the same small pocketable format and is fun and fast to read. Well…. actually, that’s a lie. Oh, not about it be fun and fast to read, about it’s being completely devoid of tigers. If you look very closely, you may catch a glimpse of the tiger, but that’s just a special treat for sharp-eyed observers.

So back when I wrote the original Tiger, I really kept the information simple and narrowly focused, just teaching new members of the tribe the basic survival skills they needed to get them started on the right foot. I figured there was a ton of books out there that they could read later to learn more. You know, when they were feeling better.

But I’ve paying attention to how people read nowadays. Attention spans are getting shorter. People don’t want to read 100,000 words about diabetes. Not when they live it day in and day out, anyway. Clearly, another Tiger book was needed. Just a bite-sized morsel that would satisfy the hunger for knowledge, without taking too much time out of the day.

So, what, logically, do you need to know after surviving the first year of diabetes? Well, now you need to know all the stuff that allows you to thrive. And a lot of that stuff can be… ummm… you know… rather dry. I needed a creative tool. To me, the best antidote for dry is humor. If the subject is boring, at least make it fun to read about, that’s what I always say.

So yes. The new book is about diabetes. And yes. It deals with serious shit. And yes. It deals with potentially boring stuff like standards of care. But no, I didn’t take myself too seriously this time, to say the least. This little book is a hoot to read. And why not? If we can’t have fun with our diabetes, what can we have fun with? So from Fruits of the Vine to Sundials, I’ve taken diabetes back into the Dark Ages. Trust me. You’ll like it.

Now, I always get a bit uncomfortable bragging on myself, but…… well, I think this is the best book I’ve written yet. Of course, Debbie says I always say that when I finish a book. But she ACUTALLY read this one, and she tell me she likes it.

And, speaking of Dark Ages, this book had its genesis waaaaaaaaaaaaaaaaaay back in 2009. You can re-read the story here:

When I re-read this post today, I was surprised to see I had threatened to turn this whole concept into a book back then.

It’ll be available as a Kindle book too, of course, but won’t be as much fun. The Kindle will be text only. The paper version has some great artwork. I’m not going to spoil the fun by talking about it; but let’s just say the cover art is only the beginning.

Oddly though, even though I was really happy with the book, a feeling of the blues settled over me once I finished it. Probably just the creative spooling down at the end of the project, but I was moping around shortly after finishing it because I’d come up with a couple of other “Tigerable” diabetes subjects.

And I wasn’t sure I wanted to write more miniature books. I was feeling like I wasn’t a REAL AUTHOR, writing these little things. Deb asked what was wrong. I don’t want to be known as the guy who only writes miniature books, I told her.

God bless her, she laughed at me. “What’s wrong with being known for writing little books that help people? Not a week goes by where one of our patients doesn’t tell me how much they loved Tiger and how much it helped them!”

“You are sooooo fucked up,” she said.

And then she kissed me.