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!).

Monday, August 31, 2009

One Tin Soldier

One for all and all for one… no wait. That’s the Three Musketeers.

High-ho Silver, Away! No. That’s the Lone Ranger.

Stealing from the rich to give to the poor is Robin Hood.

One ring to bind them is Tolkien.

The meek inheriting the earth is Jesus.

I can’t recall for the life of me what Medieval Knights say, and my internet is down today, effectively severing my knowledge umbilical cord.

Why Knights? Well, Knights in shining armor are my latest tactic to teach diabetes self management skills, and the idea was inspired by a heart attack. Read on.

When I was writing the first draft of the Tiger book my overworked little brain came up with an analogy for Appendix B, which lists the non-glucose lowering medications that D-folk should take as standard of care. In case you forgot, or can’t be bothered to take them, they are:

ACE to shield your kidneys.

Statin for cholesterol, whether you need it (yet) or not.

Metformin for protecting your large veins and arties; this is a somewhat new discovery.

And a baby aspirin for heart attack prevention insurance.

All generics. Heavy pill burnout, but low impact on the wallet.

I think what triggered my mind to cook up the Knight was the way we always say that ACE inhibitors “shield” your kidneys. Who carries shields? Well, Knights, of course. That got me thinking about a medieval knight ridding off to slay the dragon diabetes with his sword of diabetes meds, and his protective meds making up the various parts of his armor.

My editors red-penned me; saying basically, look, you’ve been talking tigers for the entire book. You can’t throw Knights at the readers in the last pages.

OK, point taken. The Knight had to ride off into the sunset. Until our Director of Nursing had her heart attack.

Now for years this wonderful but suborn woman has told me she knows her cholesterol is too high.

There’s a pill for that, I’d always respond.

“Yes, I know but _____________.” Fill in the blank anyway you want. People always make excuses for not taking pills to help with things that they cannot see or feel. If high cholesterol hurt they’d be kicking in our doors a midnight to get statins.

Even our Medical Director had given up in despair. “I just can’t get your diabetics on board with statins,” he told me last year. That lead to us getting an in-house lipid machine. I thought if I could show patients, during a office visit, what their cholesterol was I might be able to get some buy in. It works to get folks to start, but the dropout rate is pretty high. I knew I needed to get my patients to “buy in” on an emotional level.

Then other stuff got in the way until..

… our Director of Nursing had her heart attack at the nurse’s station, standing next to our Medical Director, about 12 feet from the door of our Emergency Room. That’s where I want to have my heart attack too.

Needless to say, she got great care, was stabilized and in our ambulance before she knew what was going on, and went from our ambulance straight to the heart cath lab at the regional medical center without even being taken off our gurney. Thank God she’s doing great, and I’m guessing our next discussion of statins will go better.

But I can’t give all my patients heart attacks, not that I didn’t think about it. Don’t you think a heart attack simulator would be a great tool?

But after all of this, I got to thinking about my banished Knight again. OK, so Knights and Tigers don’t really work together, but that doesn’t mean I couldn’t use the Knight at the clinic.

So on my way to Albuquerque, where I was too teach a class, I stopped at Target and bought a child’s suit of armor. On the back of the breast plate, stamped into the plastic it says “CAUTION! This simulated protective device offers no protection! (Made in China).” So I can’t use it for motorcycle jousting.

A second stop at Michaels for wood letters and two cans of spray paint and I had:

And before you all spam me, yes I know that the sword and armor look much more Roman than medieval, but we really aren’t after historical accuracy here and I’m on a tight budget.

My plan is to tell my patients, OK, you’re now a medieval Knight, dispatched by your King to slay the Dragon Diabetes. Here’s your sword. Anything else you need? Did I mention that the dragon is 90 feet long from the tip of his nose to the tip of his tail, has razor sharp 12 inch teeth and breathes fire?

What? Some armor would be nice?

Well, while we’re on the subject of armor…

I think this just might work. Hmmmm…. and just maybe I’ll turn it into a book…

Monday, August 24, 2009

Leons, tigres, y osos. Oy vey!

It is not my fault. I just want to get that on the table from the very beginning. All I did was walk down the wrong hallway, at the wrong time, with a copy of Taming the Tiger in my hand. My sharp-eyed director of nursing spotted the little book as I tried to palm it.

I’d be a really bad magician.

Thus ensued the “why didn’t you tell me you had another book published” embarrassment. I mean, I’m not exactly ego-free, but I don’t just burst into rooms to announce a new book. Just seems too…I don’t know… too arrogant.

I never tell my co-workers what I’m writing because I’m always writing something; and sometimes subjects just don’t work out. I’ve got several diabetes books on various burners in various states of completion. Some will eventually be finished and hopefully get published, others will never see the light of day.

Thumbing through the little Tiger book she said to me, “you know what would be great? It would be great if we could have this in Spanish.”

Now on the surface that sounds like a good idea. One of the fasting growing populations of Type-2s are people who come from various parts of the world where they speak Spanish, and who have moved to the States, and have starting eating our crappy food. Which wreaks havoc on their non-McDonalds DNA.

“Maybe we could find some grant funds,” she suggested.

I liked the idea, but the dark side of my mind came up with worries, objections, and problems. First off, there is no one Spanish language. The Spanish spoken in Spain is different from the Spanish spoken in Mexico. In Costa Rica it is different from Mexico. Columbians speak such a rapid-fire machine-gun Spanish that no one I know is really sure if it is more like Spain-Spanish or Mexico-Spanish. Oh, and here in Northern New Mexico they don’t speak “Spanish” at all, they speak 15th Century Castilian. It is Spanish caught in a time warp, and some common sayings up here are so offensive south of us that you can get shot in Mexico City for using them.

And then all versions of Spanish have funky rules about when it is appropriate to be chummy and when you must be more formal; something that doesn’t really carry the same weight in English.

That mine-field aside for a moment another fear crept in. Authoring something you can’t read? That seems… weird, to say the least.

But then the biggie. Even properly translated: would my work, umm, work in Spanish? How would my word-games, analogies, and humor work in another tongue--and across a cultural divide?

I had completely chickened out on the project, and had no intention of going forwards; but once a large boulder starts rolling down hill there is no stopping it. We had some CDC money for Spanish materials. I worried that using that money to benefit a staff member might not be kosher. My lawyer boss in the end declared that any marginal gain I might see was mitigated by the patient need for the material. “It’s not like you wrote a murder mystery where the detective is a diabetic,” she said.

So, three of our bi-lingual staff were tasked to read English Tiger and give their opinions about translatability. All three assured me it would work just fine in Spanish.

Next we located a translation service who informed me that there was a “U.S. Standard Spanish” often used for business, government, and health documents that could be read by all the various sub-groups of Spanish speakers and readers.

They also reassured me that it would not be a literal word-for-word translation, but a translation of author’s intent. Two separate translators and an editor would make up the project team. The team would be a mix of bi-lingual native Spanish speakers and bi-lingual native English speakers. It sounded like a good system but I still had doubts and fears.

I babbled all my worries and fears to a poor woman at their Mexico City office, and she set my mind at ease by saying “we translate both technical documents and literature. We even translate poetry. Don’t worry.”

That’s me: Mister-doctor-technical-literature-poet-writer-guy.

And so, long story short, the clinic paid for the translation using federal dollars, and gets an inventory of books at no cost. Red Blood Cell Books designs, prints, and binds the book for free; but then has the right to sell to other clinics and the like.

And I get to be the proud papa of a child I can’t speak to.

It is all very strange. But wonderful.

Sunday, August 16, 2009

My prescription for what ails us all


Oh great. I just dropped my Axe antiperspirant into the toilet. Well, this is a great way to start the day.

I’m sure all of us have dropped things into our toilets that didn’t technically belong there. The sound of the splash is quite unique. It has an unusually musical tone. It must be the echo chamber effect from the shape of the bowl and the depth of the water. You just don’t get that kind of noise when you throw your cell phone into a pond.

But I heard that musical splash a second time today when I logged-on to the Associated Press to check the morning headlines.

White House appears ready to drop ‘public option.’

Kerr-plunk! Health care reform just got dropped into the toilet.

Well, I’ve said numerous times that I’m not smart enough to fix health care, but it is becoming apparent that I’m smarter than a lot of the folks in congress; so today I’m introducing the LifeAfterDx Health Care Repair Plan.

So here is my prescription to “fix” American health care: first I need five guys with machine guns and a wall.

Sorry, that was out of line. Leave it to the chronically ill to have the blackest senses of humor. But being chronically ill also shapes my thoughts about our health system. I view America’s health care system as being diabetic. It has a chronic, progressive disease that cannot be cured. It gets worse every day. Left untreated the complications will be unimaginable both in terms of human life and in terms of cold hard cash.

But like diabetes, absent a cure, a good treatment is the next best thing. So how do we “treat” our sick health care system?

Starting from the foundation let me say that in my heart I believe that profit has no place in health insurance. But I am no fool. There is entrenched power and money in this fight that cannot be defeated. And maybe it shouldn’t be. I really don’t like the idea of legislating an industry out of existence; even a vile and distasteful one. It doesn’t feel right. It doesn’t feel American. We are a capitalist democracy.

Health insurance for profit should never have been allowed to exist, but it does, and here we are. They are part of the reform process, whether we like it or not, and the sooner we all accept it, and take the thumb tacks off the chair we left for them at the table, the better.

I think we should start our treatment of the sick health care system by giving every American New-and-Improved Medicare. My idea is that the government provides a basic foundation for all citizens. The private insurance companies can then focus on supplemental plans in a competitive market place.

The New-and-Improved Medicare for everyone would use a single payor model. It would be heavy on preventative care, something we simply do not invest in right now. We only spend 2% of our health dollars on prevention. That must change. All of you with diabetes know that preventing complications is preferable to treating them.

So we’d pay for annual physicals, and dental cleanings, and eye glasses, and mammograms, and medications that are standard of care for all the common illness our people suffer.

To encourage people to use the plan I’d offer tax incentives for reaching healthy targets. In Japan they fine people who are overweight, using the logic that such people will cost the health system more. I don’t think sticks work well with the American character; but we do respond well to carrots.

So good BMI, good cholesterol, good blood pressure. Thank you. By keeping yourself healthy you are saving us money. Please knock a thousand bucks off of your taxes this year.

Oops! Not quite to goal on that cholesterol? Here, we’re going to give you the tools and meds you need to fix that, so that next year you can knock a thousand bucks off of your taxes.

We wouldn’t force anyone to take care of themselves. And we’ll treat your self-inflicted gunshot wounds because it is the right thing to do. But if you make an effort, we’ll reward you.

This “universal” Medicare would not be a Cadillac plan. It would be bare-bones, basic. But it would help shape a healthier society. Now if the government has invested heavily in preventative care, the population should be healthier, and thus not need to use their supplemental insurance as much or as often. This (assuming the insurance companies where honest and all of that) would lower the cost of the bells-and-whistles insurance add-on plans.

I’d leave Pharma pretty much alone, as I recognize that without a profit motive there is no incentive to develop new treatments. However, I would leverage the national buying power into serious discounts like Wal-Mart does on everything it sells. I would also ban direct-to-consumer advertising. I don’t think you should “ask your Doctor” about any medication. I think you should tell your Doctor where it hurts and let him or her figure out what’s wrong and how to treat you.

I’m not sure about the Ken and Barbies and the samples. That situation has improved. And of course I want them to give my Tiger book to every medical office in the country so I have a bias, damn it. But medically . . . no. We should not allow direct marketing to doctors either. Nor should we allow sampling. (Second hypocrite alert: samples keep some of my patients alive until we can arrange permanent supply.) But like the realities we must face with private insurance, sampling and marketing to medical professionals realistically needs to be left in place.

But to balance this, we should establish a national internet clearing house run by the FDA that lists new meds in a universal format with all relevant information.

Hypertension? Your doc goes to the web site and gets a list of meds, new and old, with the latest scientific data on effectives and side effects; with each med presented in the exact same format. I’ve seen some horrendous distortion of scientific fact in materials brought in by drug reps. Statistics don’t lie. But you can use them to lie if you pick and choose your numbers selectively.

In short my prescription looks like this:

Everyone gets a free, basic plan that is heavy on prevention.

Everyone who pays taxes can get a break for reaching and maintaining healthy targets.

Private insurance will be limited to supplemental plans in a free market place.

Pharma could not advertise direct to consumers.

A national medication facts data base would be established for health care providers.

OK, sounds good, you say. But how do we pay for it? Well, long range it will actually pay for itself. Right now we spend billions treating really serious stuff than could have been prevented. Unfortunately, our society has lost all ability to plan for the long term. All of our corporations, institutions, and even our citizens can only think of short-term gain. Rome wasn’t built in a day. This will take time to fix. We’ll have to not only pay for preventative care for those not yet sick, we still need to pay to fix those who were denied preventative care over the last twenty years.

Like putting pennies into a piggy bank, I think we should pay for the plan from dozens, maybe hundreds, of sources.

If the basic plan is free, then companies do not need to provide health insurance to their employees. There is a pool of money there. Yes it would be some sort of tax, but it would actually save companies money and remove one of those scary every-year-it-costs-more balance sheet items.

We could tax unhealthy foods like we do cigarettes.

We could tax the supplemental plans.

We could have a bake sale.

But I think the simplest and fairest approach is a national sales tax on all goods. We already have the apparatus in place for collecting sales taxes levied by cities, counties, and states. A national sales tax is fair in that those who make more tend to spend more. It is an indirect way to get the wealthier to pay more without socking them with a higher percentage.

(As a side note, I do believe in “tax brackets.” Ten percent is harder to give when you make $10,000 per year than when you make $100,000 per year. I think the more you make the more you should contribute, but that is a fight best left for another day.)

On the current efforts at “reform,” I’m going to be first to admit failure. It has degraded into nothing more than forcing all citizen to buy products from the folks who helped create this mess. To buy products that increase in price at double-digit annual rates. The current “reform” is a prescription for disaster. We are asking the foxes to watch over the hen house.

This congress will not give our sick system the treatment it needs. This congress will tell it to take two aspirin and call back in the morning. They will create a bill that amounts to nothing and declare a victory. Many supporters of reform will get on board, resigned, thinking that something is better than nothing. They will fool themselves by saying, “let’s get something started and we’ll fix it later.”

I disagree. I accept that there is no cure, but I will not tolerate a band-aid. Give our system a robust treatment it needs to keep it healthy even though it is chronically ill. If we accept the band-aid congress will never act further.

Our health care system is in the emergency room. Maybe it needs to be in ICU before the fat cats will take the illness seriously.

President Obama: flush this bill when it reaches your desk. We can . . . we must do better.

Thursday, August 13, 2009

We cannot wait

We cannot wait another year, another month, another week, or even another day. We should have done this yesterday, last week, last month, or last year. We must fix our health care system, and we must fix it now.

I am tired of lies, of fear mongering. So . . .

To those of you who fear helping the uninsured will somehow threaten your insurance, I say to you: the truth that has been hidden from you for too long; you are living on a razor blade. In the snap of a finger, you too could be uninsured. As the broken system crumbles and buries us in debt, inequity, and corporate profiteering, the ranks of the uninsured will swell. Those of you who fight change today will beg for it tomorrow.

To those of you who fear a bureaucrat between you and your doctor, I say to you: get your head out of your ass. There are scores of bureaucrats tying your doctor’s hands right now; and these bureaucrats get bonuses for denying care. They aren’t government bureaucrats, they work for insurance companies.

To those of you who say we should not interfere with the free market, I say to you: the free market has no place profiting off of death and suffering. Insurance can only make money for their shareholders and multi-million dollar bonuses for their executives by denying the care that they have contracted to provide. It is a war crime of class warfare. If you don’t want a public option, you do not need to buy it. But some of us want a choice.

To those of you who think the congress is seriously setting up death camps for senior citizens by paying for end-of-line consultations with their doctors, I say to you: we will all die when our time comes. It is OK to die with dignity. It is OK to ask your doctor when enough is enough. It is OK to understand when the sophistication of our science and the technology of our medicines have smashed against the brick wall of nature. It should be OK to ask your doctor if the fight can be won; or if it cannot.

Health care is a mess. I know because I both work and live in it.

I do not pretend to have the answers. I know we will not all agree. But it is time to end the lies, the attacks, the scare tactics. And it is time to start action, because today is already too late; and waiting until tomorrow is unimaginable.

Monday, August 10, 2009

Sleeping with drug reps

The headline is only figurative, damn it. I guess by now everyone knows about my fascination with a particular drug rep who lucky for me doesn’t fool around with married men. Sigh...

Annnnnyway, one of the things I had hoped to get out of the Social Media Summit at Roche was some ethical guidelines for those of us in social media about our relationships with the Pharma folks. We spent a lot of time laying out our mine fields and sacred cows to them; but we didn’t really turn the table on ourselves. We only skirted the issue.

The problem is Pharma, literally, has all the money. We have none. We want our voices free and independent but you can’t talk if you starve to death.

Amy of DiabetesMine treats her blog like a newspaper. There is a clear separation of editorial (what she writes) and advertising. Quality journalistic publications for generations have done this. The journalists cover the news. If advertisers get caught up in the news and don’t like what is said about them they are free to leave. Amy has even out-sourced the advertising part of her site for further separation.

On the other extreme, Kerri of SixUntilMe has accepted site sponsorship from DexCom. In her words: DexCom is a sponsor of and provides DexCom products to Kerri. All content is that of the author and not reviewed or approved by DexCom. Six Until Me can't be bought or sold. There isn't anything posted or endorsed that the author doesn't believe in. The author believes in every stitch of this blog. That's the bottom line.

DexCom doesn’t have Kerri on payroll by any means, they give her the CGM sensors that she needs to have to stay healthy. Sensors her fucking insurance company won’t provide for her. Would Kerri have accepted a sponsorship if her insurance covered her health needs? I very much doubt it. Like I said, Pharma has all the money. We have none.

In between are product samples. I’ve accepted samples to review, and the company who samples me takes a chance. I might rave. I might trash them. My call, their risk. But that is onesie-twosie, not an on-going relationship.

I never accepted ads at my site, it just never felt right to me. Even though it has become standard practice in the blogosphere, I never did. Don’t get me wrong, I’m not saying I think it is bad to do so. Quite the contrary, adds on sites I read don’t offend me or bother me.

Blog wise, avoiding conflict has been easy for me. But as a bricks-and-mortar author things are quite a bit different. Blogs are free. Books cost money. Big time. They need to sell.

My first book is doing fine on Amazon and elsewhere, but writing the Tiger book put me on a collision course with my own ethics. Taming the Tiger is written for folks who are too sick to go look for a book. It really needs to be handed to them on the day of diagnosis. With that goal in mind I dove into the confusing and confounding world of grants and foundations.

And I found myself in the same position Kerri was in with sensors. I couldn’t get grants to place books because I’m not a non-profit organization. Neither is my small publisher, not that Red Blood Cell Books is making any money in this economy, but in theory they could. Foundations, it turns out, don’t give money to people who ask. They find people on their own.

I know some folks who run non-profits. But you know what? Money is really tight out there. They are having trouble funding their own mandates. They don’t want to compete against themselves to help me.

I could start my own non-profit. Maybe. Costs money. And it takes time. Look at your clock on the wall. Every 20 seconds someone in our county is diagnosed with diabetes. Three every minute. 180 every hour. 4,300 every day. 30,100 every week. 120,000 per month… They don’t have time, so I don’t have time.

So… how can I get books into the hands of doctors to give to patients…yeah, I see the 800 pound gorilla standing in the corner, but I’m ignoring it…think, think, think. There must be some other way.

But the best way to get the books to the doctors to give to the patients is to used the 800 pound gorilla. The pharma reps call on virtually every medical office in the country. They used to give doctors golf clubs, Hawaiian vacations, hookers… But one step ahead of the law they now all work under a new self-imposed code of ethics that has even done away with the drug rep pen. Now all reps can leave are patient education materials with a value under one hundred bucks. Hmmmmmmm…

And so I found myself floundering in grey water. First, ego aside, I really believe this little book can both help soften the blow of diabetes diagnosis, and help the new members of our family get on the right road to healthy diabetes. And I really believe we need to get to books into the field. Right now. And obviously, Pharma is at least one very good way to do that.

A first I flirted with the idea of just contacting meter companies, kidding myself that they weren’t really pharmaceutical companies. But you know what? 90% of meters are made by the big players who also make everything from band-aids to chemo drugs.

I agonized for a looooong time; then took out my tarnished, battered, and dented moral compass with its cracked glass crystal. Which direction do I go? Follow the logic of my mind or the beating of my heart? If drug reps give my book does it imply an endorsement of their product? It is neutrally written, but they will want their name on it somewhere, even if just a sticker saying “a gift from your friends at Big Pharma.”

In the end I asked myself the question I always use to navigate through ethical grey waters in health care: what is best for the patient?

So if I believe that Tiger is a valuable tool for the newly diagnosed, that is most effective given at the time of diagnosis, then I need to swallow my pride and use the obvious resource standing in the corner.

I sat down and wrote a letter asking for help and sent it, along with a sample book, to every company in the United States that sells diabetes drugs or supplies. Now I’m waiting to hear back. Bottom line: why sleep with one drug rep when you can sleep with two? Or three? Might as well make it an orgy.

And if Brand X buys 50,000 Tiger books then does something trash-worthy, will I trash them in my blog?

I wish I knew the answer to that question. I pray the day never comes when I have to get my battered moral compass out to find a way through that fog.

Sunday, August 02, 2009

Calling all cars . . .

OK, well, not cars. It just had a better ring to it than “calling all diabetics and persons with diabetes.”

Here’s the deal. I want to talk to Oprah. But like Wonderwoman and Supergirl; her number is unlisted. And so is her address. Go figure. It’s not like her phone would ring off the hook and she’d be buried in junk mail. Oh. Wait. She would, wouldn’t she?

So about the only way I’ve found to get a hold of Oprah is the contact form on her web site where you, no shit, are limited to 2,000 characters. Not words. 2,000 letters, spaces, and punctuation marks. Of course Oprah is not reading the flood of 2,000-character missives that arrive at her headquarters hourly.

She has people for that.

And statically, at least some of these people gotta have diabetes, right? I’ve tried emailing several times. My wife has tired. My doctor has tired. My mother has tried, probably more than once.

But like the statues on Easter Island; Oprah remains silent.

So why do I want to talk to Oprah? Actually I don’t care if I ever “talk” to Oprah. I just want Oprah to read my book The Born-Again Diabetic. I think if I can get it into her hands, she will recognize what it can do for patients. And then, maybe, she might, you know, spread the word or something.

So in my first (and hopefully last) use of the D-blogosphere for personal gain I have a request: I am asking, pleading, begging all of you who found value in my book to email Oprah. Maybe if a hundred people shout under the window one voice will get through.

At there are show idea links, magazine idea links, website idea links, and one asking if you’ve spotted a celebrity lately. Huh. But it seemed to me like the most logical link is at Oprah’s Book Club, where the question is asked: What are you reading this summer?

Here is the link:

You might want to cut and paste rather than try to re-type that puppy by eye.

And thanks in advance to all of you who take the time to help me out on this!