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, November 15, 2008

The book is comming, the book is comming!

Oh crap, I said out loud to myself as I opened my email, I missed Word Diabetes Day.

From the next room came my nephew’s voice, “You missed World Diabetes Day? What kind of diabetes educator are you?”

Yeah, kinda like Santa Claus missing Christmas, I replied.

Well, like Santa in December, I’ve been a bit overworked, and so much has happened since the last post I don’t even know where to start or how to tie it all together. I think a grocery list kinda post is the best approach. Get a cup of coffee, this is going to be a long one.

The first really exciting news is THE BOOK. It is done. It is real. It is being published and I’m really happy with it and want to tell you all about it….but it feels kinda of awkward tooting my own horn. Bizarre, I’m not usually at a loss for words, and as regular readers know I not shy about saying anything.

So here’s the deal, there is a link at the top of the blog that will take you to Red Blood Cell Book’s web site where there is a super pre-order deal going on. The book hits the street in mid-February. In publisher-speak the release date is scheduled for February 15th….

The pre-order deal is 25% off and free shipping. Go ahead. Go there now. I don’t mind waiting.

…….

…….

…….

…….

…….

Did you buy one? Well, why the hell not?! Hey, February is closer than it sounds, and I think the discount gets less and less the closer we get to the date.

Well, I think I’ve done my part as an author to promote the book, right?

Oh. You want it autographed? You’re kidding, right? No? OK. No problem. I’m happy to autograph. Just add a message in the shopping cart that says “autographed copy please.”

Really, this is the best thing I’ve ever written, and my deepest hope is that it will help more folks than I can reach on my own. I also invite you to vote on my next project at the end of the post.

Speaking of reaching more folks, something really exciting is happening at the clinic. We’re part of a telemedicine project with the big university in the state. The basic concept behind the several-year-old project is that primary care providers can present cases to experts at the big teaching hospitals and get advice that allows remote patients to be treated for complex conditions without leaving their communities.

It started with Hepatitis C, a nasty virus you can get from sex, drugs, and rock-and-roll (not necessarily in that order). Hep C wipes out the liver and can and will kill you in the fullness of time. It actually can be treated and often cured, but it is a nasty process similar to chemotherapy. Still, better than death in most peoples’ books.

So to treat Hep C, we have this big TV screen in our conference room that has a camera. We can see the experts and they can see us. You can also see the various other clinics spread throughout the state. It’s pretty cool. Our providers can present cases, and the experts take them though the complex panels of labs necessary to treat Hep C and help us monitor the patient’s progress as treatment is initiated and goes forward.

There are now a dozen other conditions that have weekly teleconferences using the same pattern. I’ve been doing the diabetes one for over a year.

If something comes up that I don’t understand (shocking, I know, but it does happen now and then) I can present the case and get the opinions of endocrinologists, mental health folks, nutritionists, and peers. I always attend, every Wednesday during my lunch hour. I always learn something. I generally have some useful input. Everyone wins. Me. Other educators. Providers. And most importantly, the patients.

Since its inception, the “model” has been the rural medical folks making the virtual pilgrimage to Mount Olympus where the specialty gods dispense their knowledge.

Actually, that’s not quite fair. In the diabetes program the endo in charge is really good about coloration. A case is presented. She asks some specific questions about the patient or his/her labs, or whatever. Then the “floor” is opened to all of us to ask any questions so everyone has a clear picture of the case. Then the Doc gives her thoughts and asks for other thoughts. Sometimes a lively discussion follows.

Now the model is going to change. And as you might have guessed, I had something to do with it.

So once per year there is an annual convention where all the folks in the field, and all the university folks, get together for some face time. At one point the university was inviting feedback. What can we do better to help you? For the most part it was a nauseating love fest. Until….

(Nope, it wasn’t me).

Until one doctor got up and talked about how hard it was for him we he got a newly dx’d diabetic. He just didn’t have the time to tell the patient all they needed to know. He wished he could just write a script for a telemedicine program for the patient.

And in that split second, the universe changed for all time. The room fell silent. And I can still hear the program director’s one word reply:

“Brilliant.”

Now I wish I had thought of it, but I know a good idea when I see one. And I knew this was a job that needed to be done from the bottom up, not the top down. I corned the program director and made my case: nothing is better for the newly diagnosed diabetic than to be able to talk to another diabetic. Who is better qualified? Who has more credibility?

This was a complete paradigm shift. We were now talking about a completely new way to use the telemedicine system. Instead of providers talking to specialists, we would use the system for patients to talk to specialists. My argument: since we’ve turned the whole model on its’ head, why not have these patients talk to me at my little remote clinic instead of talking to someone at the university?

I don’t know if my argument made sense, or if he knew I wouldn’t let him out of the corner until he agreed, but he told me to get with the tech people and make it happen.

Now, at that time, which was only this September, there was about $10 K in gear involved in connecting a remote site to the program. But the timing was accidently good. In a perfect storm of coincidence, the university folks had been working on an internet interface. Any doctor’s office with a PC and a web camera will be able to log on by month’s end.

So here is how it will work. Suppose, like 4,000 other Americans today, you are given the news: you have diabetes. Your doctor writes a script: come back on Tuesday, you’ll use our computer and get all your questions answered. Actually, if the new diabetic has the gear, he or she could connect from home too.

Every week I’ll host a small-group internet video class for the newly dx’d. We’ll all be able to see each other, talk to each other. The new member of our club gets standardized, quality education, a sense of community, and plenty of time to get questions answered.

I thrilled. The primary care docs are thrilled. My boss is thrilled that we are the first remote site to be become a source of care to a wider net. Pretty cool, this computer stuff.

And speaking of computers, I want to tell you about my new keyboard. It started at work, where I have a new office. More about that in a minute. Anyway, when my new office was set up the cable between my keyboard and my tower didn’t reach. At least it didn’t reach to where I wanted the key board to be. So Rio and I set out for BestBuy in Santa Fe. I’d had a wireless Microsoft key board in the past, so that’s what I went looking for.

When we got to the keyboard isle, there were a dozen to choose from. I took each one, sat on the cart (the carts there have long fork-lift style beds to handle large boxes) and finger-tested them. Like Goldilocks and the three bears I found some sort of fault with each one in turn. Too hot, too cold, but none just right. Then Rio pulled one off the shelf, “this one looks cool, Daddy.”

It was a Logitech Wave. There was no sample, but the box was designed so that you could open it and rest your fingers on a thin layer of plastic above the board. I knew in a flash that I had found the bowl of porridge that was just right for me.

That was on a Friday. I couldn’t wait until Monday to get to work, plug it in and try it out. In front of the space bar is a wide soft pad to rest your wrists on. The keys curve very subtly, banana like, not straight. There is a button that brings up the onscreen calculator, another that turns on your music, one to open Word, another for Excel.

The resistance is just right. The keys aren’t too hard, and aren’t too soft. But I saved the best for last. The key board isn’t flat, it bows in slightly in the center of both hands where your fingers are longer. This key board is like fine Italian driving gloves: a perfect fit. I could type all day on this thing.

It is sex for the fingertips.

When I got home Monday night Debbie asked me how I liked my new keyboard. I’ve got good news and bad news, I told her, the good news is I love it. The bad news is we’ve got to go back to BestBuy and get one for the house too.

And speaking of the house, we have a new member of our household. About a month ago the skinniest tabby cat you’ve even seen in your life showed up and started tearing apart the trash bags that Deb sets on the front porch pending transport to the county waste transfer site near town.

At first I only saw the cat once and a while. Then weekly. Then twice a week. Then three times per week. Then daily.

Having a soft heart, I couldn’t stand to see such an emaciated critter on a daily basis. I finally broke down and poured her a bowl full of Khaki’s food and some water. I knew this was crossing the Rubicon. You feed it; you own it.

The poor thing wolfed the bowl of food down without stopping to breathe.

Anyway, it took time, as this was a cat that apparently had no reason to trust humans, but she eventually came inside. Pretty quickly she realized that inside was a good deal and has shown no interest in putting so much as a paw outside. At first she didn’t act much like a cat at all, but that turned out to be starvation talking. In about two weeks she began tolerate human touch, so long as you don’t touch her head.

Of course Khaki was not too thrilled to have another cat in the house. There was some hissing and growling. Even a cat fight or two. Or three. But they have come to some sort of accord and actually play together and seem to enjoy each other’s company. So now it is Me, Debbie, Rio, Khaki, and Sage that make up the household.

So company reminds me of my adventures with a Company. I had been wearing a loaner/demo OmniPod up until recently. Of course, I have a talent for finding fault with any device, but this one is pretty damn good overall. In fact, I wanted to get one of my own, but the “wonderful” new clinic insurance is turning out to be not so wonderful at all, a fact I had worried about in advance. When our boss presented the new insurance plan to us at an all-staff meeting I pictured the Canadian Flag flying over the state capital building. New Mexico had been invaded by Canada and had lost. Lucky us.

On the surface it looked great: very, very, very low co-pays. Visits to your primary: free. Specialist: five bucks. Emergency room: ten bucks. Four dollar Rx with a $12 out of pocket monthly max for all of your meds (of course as it turns out, the only medication on the formulary is Vitamin C); and 100% durable medical goods coverage, which was music to my ears.

That would/should mean pump supplies and CGM sensors would cost me nothing. Nada. Diddlysquat. Zero dollars and zero cents.

And all of this wonderful coverage would take a smaller bite out of my paycheck than the previous piece of crap insurance that we had, which stole a quarter of my pay and didn’t cover hardly anything.

Well, if it looks too good to be true, it probably is. So far, I’m yet to get anything at all covered by this new insurance; but that’s a story for another day. Back to the OmniPod, which my wonderful new insurance won’t cover. I was sooooooo tickled with this device I decided to buy a few shares of stock. I Googled around and chose ShareBuilder from ING, as ScottTrade required too much of a minimum for me.

So on black Friday, with the market tumbling I made my move. I bought $100 of OmniPod stock and lost $30 in twenty minutes. I lost even more the next day.

One of my sock-savvy friends called to check in. I bought stock, I told her.

“That’s wonderful,” she said, “what did you get? What’s their PE ratio? How much cash do they have on hand? What their debt…..”

Ummmmmmmmm…I dunno…..

“How much did you buy?” asked my shocked friend.

Hundred bucks.

She sighed, then said, “Oh well, you probably would have pissed it away on eBay anyway.”

True. But I think I’ll make a micro-killing when the markets recover. The OmniPod folks have a good product. But if not, losing one hundred bucks isn’t going to kill me either.

Finding myself pumpless, yet again, I am now shooting Lantus in the morning with an old-fashioned syringe and using a Lilly Memoir pen with Humalog for boli and corrections.

This pen came out about a year ago, maybe a little longer. It is a permanent pen that takes a prefilled cartridge. It is magnificently made. It is sturdy metal, has a beautiful burgundy and chrome finish and has a smooth movement reminiscent of a Swiss watch. It also has a memory that stores your last 16 shots. Handy when half way through a burger you can’t remember whether or not you remembered your shot. (They all sort of blend together in your mind after a while….) I’m also finding it really handy for planning corrections. Did I take that shot four hours ago, or was it only three?

I gave quite a few of these things away when they first came out and I’ve got a number of patients who still love ‘em. I never used one before. At the time, I was using the disposable “turbo” pens. The Memoir seemed too big and heavy compared to the light-weight throw-aways.

But now that I’m wearing cargo pants, the weight of the pen isn’t so bad. In fact, I shocked my Lilly Rep last week when she came to visit by saying to her, “Hey I want to show you what I have in my pants!”

She was relieved when it was an insulin pen that I whipped out.

So speaking of being whipped, there was quite a shift in power on November 4th, huh? But to be honest, I really hope the next president waits a year to take on health care reform. As much as we need it; taking on the confluence of money, power, and influence of the various industries that make up health care make naked alligator wrestling look safe by comparison.

Mr. President: please get us energy independent first. Then do what you can for the economy. Then give me a call: I have some ideas on fixing the health care system.

What’s that? All of you want to know my ideas? OK here we go, but first the rules.

(Remember the movie Butch Cassidy and the Sundance Kid: “Rules? There aren’t any rules in a knife fight!”)

But this knife fight has a rule called reality. If we really wanted to fix health care we need to get profit out of it. But that won’t happen. Ever. Forget about it. However, failing a cure a good treatment will do, right fellow Type-1s?

So my treatment for the US health care system starts with giving Medicare to all citizens. Or something like it. A simple basic, no frills coverage plan. Maybe we could even be really radical and encourage preventive care. Right now only 2% of health care dollars get spent on prevention; something I learned in graduate school before I dropped out. More on that later.

This basic foundation would be free for everyone. It would be a single payer system. That makes it possible for doctors offices to practice medicine rather than practice accounting. To keep the profit whores at bay, the entire private health insurance industry would be allowed to remain alive, but now it would feature a variety of supplemental plans. As the basics would be covered, these supplements should be cheaper, assuming that there are no price fixing deals behind closed doors.

Now did you hear about the Japanese? No, not the overweight dolphins at the aquarium, although I thought it was interesting that even dolphins in captivity are having an obesity crisis. I was talking about the waist-line tax.

Apparently, American-style fast food is all the rage in Japan. So the Japanese, not surprisingly, are getting fat. And getting diabetes. And that’s getting expensive. Thus, the government is charging higher taxes on overweight citizens using the rational that these people are causing the national health care system more money.

I’m not in favor of that here. Besides, Americans don’t deal well with threats. We do love incentives, however. I suggest that we establish some best practice guideline numbers for blood pressure, lipids, and blood sugars and give various levels of tax breaks to people who meet the goals. You are healthy. You cost us less. You pay less.

Last, and most difficult, is big Pharma. Can’t live with them, can’t live without them (literary, in my case). I know all the arguments. Costs many millions to get drugs to market, even without the dead end research that didn’t work out. They need a profit motive to develop new stuff. The med goes generic in 15 years and everyone gets a copy of the recipe and can sell it with none of the upfront costs.

But, like oil companies, some of these outfits are making obscene profits rather than honest profits. It is hard to legislate morality. But here are some ideas: extended patent protection for firms who keep the monthly cost of medications below a certain threshold. And/or a new formula for how developments costs can be written off. Just like citizens, I’d rather see some sort of incentive for good behavior than laws attempting to require it.

Anyway, no matter what your politics, it is interesting times, ay? Speaking of voting, we’re going to have a little exercise in democracy here at LifeAfterDx. I’ve got three projects available to me for my next book. They are:

One, a guide for Type-3 diabetics (our loved ones) to help them better understand diabetes; how and when to help us, and how and when to NOT help us.

Two, A guide for newly dx’d members of the family. There is still a real lack of good information for newly diagnosed diabetics out there; at least presented in a way that I feel it should be. I was at an ADA board meeting Thursday night (more on that in a minute) and there was a very heavy set young salesman who had been dx’d fairly recently. Afterwards I went to talk to him and asked if anyone had welcomed him to the family yet. “No, I wouldn’t put it that way,” he told me. He’d received no positive support. He told me he regarded his dx as a death sentence. I told him, no, it is a life sentence, in the best possible meaning of the concept.

Or three, a CGM manual, sort of a fleshing out of my famous Art of Control post.

Three books to choose from. Which would you like to see next? Vote via comments.

So some of you are probably wondering what I was doing at an ADA meeting, having been a very harsh critic of this money, guns, and lawyers organization in the past. Well, believe it or not, they invited me to be a state board member. My first thought was they must have confused me with someone else. My second thought was this was my chance to try and create change from within, to bring the voice of the patients back into the halls of the ADA.

So I said yes to the orientation dinner, where upon my wife said, “you can’t wear cargo pants to a board meeting. Period.”

So I put on my sheep’s clothing over my wolf fur and went undercover, planning to be accepted before anyone could realized what they’d gotten into by having me around.

But then, they were all so damn nice. And so damn genuine. And so damn caring. And I was feeling like a bit of a fraud.

At the end of the night, I was the last one to leave. They had given all the prospective board members the pitch and the paperwork. It was all very low key. Think about it. Get back to us. But I filled out the papers there. The state directors eyes lit up when she saw the papers in my hands. She reached for the sheets, “are you going to join us?”

But I did not let go of the papers. I gotta warn you first….

So I told them how I felt. How many of us feel. That the ADA is mainly interested in our wallets. I went on in that vein for about five minutes. And was told: that is why we want you. We need your help to change the organization.

Oh. I guess they didn’t confuse me with some else after all. Now I’ll have to add “ADA Board Member” to my resume and tomb stone. Who’d a thunk it?

So I haven’t talked about dropping out of school yet. Or my new office, but this post is getting kinda of long, even by my standards, and I’m not sure any of you are still reading. I think I’ll save those stories for another day.

Oh, and happy belated Word Diabetes Day.

Does Hallmark make a card for that?

3 Comments:

Blogger Scott K. Johnson said...

Wow Wil, lots of stuff going on with you man. But I'm very happy to see an update - it's always fun to read your stuff.

I've got to wait for my allowance before I can buy a book, but I promise I will get one (but only if you autograph it for me). :-)

My vote for the next project is the CGM book.

5:22 PM  
Anonymous Kelly said...

I made it to the end, and when I get another chance, I will read it again. All of the 3 are good ideas, I would pick CGM, then type 3then newly dx.
I have to wait for some economic stimulus or a turn of good luck before I order. I guess I could order and give an IOU to a person for Christmas.
I told you I'd do some proofreading for you.

8:58 PM  
Blogger Mary C. said...

Hey Wil, I bought the book immediately and then went back to the blog. That's when I saw you offer to autograph it. Well damn, is it too late?

Congrats on the tele-med and ADA gigs. Sounds like you'll have plenty of time left over to say OK if Obama taps you for the Health and Human Services cabinet spot that's coming available.

Count me in on the CGM book. We've got the Navigator and we love it, we hate it, we can't live without it. Please help!

Can't wait for the new book, autographed or not.

6:03 AM  

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