Endos: 3 Optos: 11

Confession: I don’t have an endo. Yeah, I know, I know—we are all supposed to have one. But, frankly, I don’t see the point. Don’t get me wrong, my original endo back when I was first Dx’d was a big help. But once I got my sea legs with the disease I didn’t find the one hour a year with the endo (fifteen minutes every three months) to be very helpful. I had two endos retire on me—you should always seek out a doctor much younger than yourself—and after test-driving a third whom I didn’t like, I just threw in the towel.

But speaking of seeing, the annual visit to my eye doc is a different story. I hate going to see him, because it’s scary. But I never miss it because while I can see what’s happening with my blood sugar, I can’t see the back of my retina.

My eye doc is a thin, patrician-looking man. He always dresses East-coast doctor style with the personalized long white lab coat and a tie. He never has so much as a hair out of place. He walks without a sound and speaks in a soft voice. All things being equal, he reminds be a bit of the Grim Reaper, only in white, rather than in black. Still, I like him and it seems to me that he gives me a more than average going-over each year because I have diabetes. He takes his time. In fact he spends more time with me on a visit than any endo ever did.

And without fail, the first thing he asks me each year is: “And how is your A1C?”

Because our A1C machine at the clinic must be broken, or malfunctioning, or something, this year I was able to say, “Six-point-five on the nose!”

That’s a great blood-sugar control conversation stopper with any doc.

So without further ado this year, he dropped stinging battery acid in my eyes to force the pupils open, robbed me of my glasses, poked my eyes with a blue light-tipped probe, and then blinded me until my ears rang with a piercing white light. But it seemed, from what little I could see, that he was frowning.

Why would he be frowning? Is there… a problem?

Worry began to set in. Followed shortly by panic. Deep in my stomach a knot formed. It spread upwards, outward. Primal fear devouring my soul like a wildfire. OhMyGod. It must be the first signs of retinopathy! The statistics on retinopathy and type 1s began to drift through my mind. Rolling across my eyelids like the red and purple after-images of the bright lights I’d been subjected to: Ten years after Dx is when you find the beginning of eye damage in half of us.

Could this be it for me?

My eye doc sat back for a moment. Then started the exam over again.

My mind retreated to the darkest corner of my skull. What would it be like to be blind? How would I be able to work? I couldn’t commute. I wouldn’t be able to see the downloads of my patient’s meters, or read their body language when they lie to me about taking their medicine. Plus, if I blew out my eyes, what would that do to my credibility as a diabetes educator?

My eye doc rolled his chair to his computer, typed in a quick note, then turned to me, and very seriously said, “Well everything looks great. I don’t see any signs of diabetic retinopathy what-so-ever. No signs of cataract. No signs of glaucoma. Your reading vision is unchanged, and your distance vision has only changed by one quarter diopter, you don’t even need new glasses. Keep up the good work, and I’ll see you next year.”

The panic evaporated. The shadows in my mind retreated.

Happiness is a clean bill of eye health.

Resistance is futile… or maybe it’s fact

I had food for thought the other night while I was feeding my face at a drug rep dinner. The presentation was on the GLP-1 medicine Victoza, and even though I feel pretty up to speed on this med (we have fifty or more patients who take it, my wife takes it, and I even use it off-label myself), the dinner was at a place I like to eat, so of course I went.

Now, the quality of this kind of program varies a lot. The marketing logic behind a drug rep dinner is that if an important doctor speaks highly of a product, average doctors will be more likely to prescribe it. Oh, right. And to get the average doctors to listen to the important doctor in the first place, you need to offer them a free expensive meal. This marketing strategy has been scientifically proven to work, which is why Big Pharma throws a ton of money at important docs who are willing to take the dough. Of course, this means the speaker is literally bought and paid for, so I bring not only my appetite but a healthy dose of skepticism with me when I go to these things.

Sometimes the speakers are ballyhoo men, sometimes they are interesting and amazing. Sometimes they are entertaining speakers, sometimes they drone and put the audience to sleep with a heavy dose of PowerPoint sleeping pills.

Sometimes I learn something new, sometimes I don’t. So I never quite know what I’m going to get out of attending, but I can always count on the wine being free and flowing equally freely, and I often enjoy the company of the other participants—if not the program itself.

In this case, the speaker disappointed. Big time. His slides were out of date, and he didn’t know them well. He kept harping on the AACE guidelines and how they were so much better than the ADA guidelines, but his PowerPoint was showing the old guidelines. He was oblivious to the ongoing trials of the med he was peddling for both weight loss and type 1s. Hell, I could have done a better job. Of course, what average doc would listen to little ’ol un-certified me?

During the post-talk Q&A, over desert and yet more wine, a lady doc in attendance observed that when she starts patients on Victoza they do great for a month or two. Their blood sugars improve, their weight drops, their appetite curbs. Then they often lose traction. It’s almost like the drug stops working as well, she said. Then she asked the speaker: “Do you think there’s such a thing as GLP-1 resistance? Do you think our patients might be developing resistance to the Victoza?”

Wow! What a great question. What an astute observation, I thought to myself. I’ve seen the same thing that she was describing happen, although not often. Yet, never in a million years would it have occurred to me to think about the possibility of GLP-1 resistance. My ears perked up. Maybe I was about to get something other than free wine out of this dinner.

Doctor Important, without even taking two seconds to consider the question, waived his hand dismissively, “No. It’s all a patient compliance issue. The diabetics start eating too much again and overwhelm the effect of the medication.”

(((Sigh)))

Same old endo song and dance. It’s always the patient’s fault, no matter what. I hate the word compliance and it’s more evil twin: non-compliance. In my wine-fogged mind I briefly had a vision of every type 1 in the country arriving at their endo appointments wearing T-shirts that say: Comply This!

The lady doc dropped it. But I didn’t. When I got home I spent some time investigating the clinical research net (more commonly known as Google with Whiskey). I couldn’t find anything about people developing resistance to the meds, but GLP-1 resistance itself is actually a well-documented biological fact, and one theory is that it might even be the driving force that triggers gestational diabetes! So if some people are resistant to GLP-1, it only stands to reason that you could become resistant to the effects of an artificial “supersized” GLP-1 in a pretty baby-blue pen.

Maybe our speaker should have had some of the free-flowing wine himself. It’s been shown to be a good prescription for opening closed minds.

To sleep, perchance to dream of sleep

I didn’t know what I was going to write about today until exactly 4:19 this morning. That’s when my Dex G-4 woke me up with the news that my blood sugar had dipped below 75 mg/dL five minutes previously.

Why didn’t it wake me up at the time of the low? Because I slept right though the vibration that serves as the first-phase alarm. The Dex was sleeping on the nightstand because she needed recharging and the Dex recharging cable isn’t long enough to reach from the plug to the bed. In fact, it’s not long enough to reach from the plug to much of anywhere at all.

But I digress.

So it’s dark. And I’m tired. I cancel the alarm with my thumb and pry one eye open. I look at the trace line on the face of the Dex. Dinner left me a bit high, cresting at 250 for a short period. Then a bedtime correction on the t:Slim pump brought me nicely back down to target by 1 am. At that point, the trace is dead flat and level at 80 or so all night long, until it coasted a hair low and triggered the alarm.

So now I have three choices. One: I can assume that my super-accurate CGM knows what it’s talking about, take some sugar, suspend the pump, and roll over and try to get back to sleep. Two: I can take a fingerstick so I can be sure what’s really happening. Three: I can ignore it and try to go back to sleep.

Option one is harmless. Even if I’m not quite as low as the CGM thinks, 15 carbs isn’t going to kill me, and I often exercise this option, as it’s most likely to let me get back to sleep. Option two is the “proper” FDA-approved approach, but the extra work and brain-time is more likely to wake me up and prevent me from sleeping the rest of the night. Finally, option three is a loose-loose, because in a low-coasting pattern like this one, the Dex will just re-alarm in thirty minutes and wake me up again. (Note, this third option will work when the CGM does one of its funky chicken dance drops where the sensor signal suddenly “crashes,” then quickly recovers—the all too common nocturnal “V” pattern that drives me fucking crazy.)

For no clear reason, and with my brain only firing on two of its six cylinders, I chose to do the fingerstick. I fumbled in the dark for my meter case (attention developers: what about a glow-in-the-dark meter case?). Unzipped it. Popped open the teststrip vial with my thumb and removed a strip. Then, using diabetes brail, determined which side up it needed to go, inserted it into the mouth of my recalled-but-not-yet-replaced OneTouch Verio IQ, and quickly covered the full-color screen with one hand before it could blind me. Yes in a virtual symphony of design flaws, the Verio has probably the best-ever teststrip port light—a soft-glowing white nightlight across the top of the meter—that’s completely overwhelmed by a FBI interrogation-bright light that blasts out of the face of the meter itself like a nuclear explosion once it gets to the all-white “apply blood” screen. This always makes me appreciate the t:Slim’s mostly black-background screens. I lance the tip of my ring finger with a Accu-Check FastClick that’s Velcroed into the seam of my Verio case, and gently squeeze the finger, bringing up a nice dome of crimson blood. I touch the edge of the blood drop to the stripe on the golden teststrip and Zipppp! The strip wicks in the blood. Then the countdown starts. If you’ve never used the Verio, it has a moving countdown graphic like a doomsday device in a James Bond movie. 5… 4… 3…

By now I’m half awake, wondering if I need to adjust my basal rate.

I close my right eye completely, and squint with my left to read the result without melting my retina.

132 mg/dL.

Crap. Now I’m fully awake. I re-calibrate. The Dexcom magically changes its opinion of my blood sugar from the high sixties to 101. I have to say, I don’t understand how this whole calibration algorithm works. For instance, yesterday the Dex was at 103. The fingerstick was at 104. When I calibrated, the Dex jumped to 112. What’s up with that?

Anyway, when the sun crested the mesa this morning I found myself thinking that over this last eight-tenths of a decade it seems I dream of sleep more than I actually get it. First, I’m not the best sleeper to start with. I often have a hard time shutting off my brain at the end of the day, then once I finally get to sleep I’m easily wakened, and once awake, I have a hard time getting back to sleep again.

So from a sleep hygiene perspective, CGM-enabled diabetes was a pretty bad choice of diseases and gear for me. Although looking at other chronic illnesses, I’m not seeing anything on the list that really jumps out at me as being a whole lot of fun.

But I wonder… how many times have the various CGMs I’ve worn really saved my life at night? And how many nights of sleep have they robbed me of with no real cause? Will the systems I count on to keep me alive put me in an early grave from disturbed sleep, exhaustion, and all the short and long-term health issue that come with it?

I guess it’s a choice between the risk of a fast death vs. the promise of a slow death. Yeah, the damn CGMs are probably killing me a little at a time. But one bad hypo at night and it’s GAME OVER.

The vexing vile vial

I can’t stand it anymore. Will someone please re-invent the frickin’ teststrip vial??! Our meters get smaller, and sexier, and faster with each passing year—but the stupid tub that holds the strips still wallows in the past.

Only Walmart, of all people, has done anything at all with their tear-dropped shaped vial for Reli-on strips, but I know we can do better. Let me tell you what I want. (Listen up diabetes investors, because I doubt I’m the only one.)

I want a high-tech reusable vial that can hold any brand of strips. I want it small and flat, flat, flat. And it should have a built-in light that comes on when you open it. I thought of that just last night when I spilled 49 test strips on the floor in the dark while trying to get out one strip to confirm a bloody CGM alarm.

Naturally it was a false alarm. But thanks for asking.

So a light would be great. Not something that will blind us or wake up our type 3s, but something akin to those soft orange night lights of the 1960s that every house in suburbia had in each and every hallway.

Now I know what you are going to say, the problem with a reusable strip carrier is that the strips will go bad. The disposable tubs we’re stuck with now are lined with a white clay-like substance that’s a preservative and a passive anti-humidity system. But I don’t see a problem here. A reusable vial could have a replaceable insert to help it keep the strips fresh and in fighting condition. And this Über vial doesn’t need to hold fifty strips. It only needs to hold a dozen or so. Just a day’s supply. I don’t mind filling it up each morning if it means I can leave the vile vial from the strip manufacturer behind.

But, of course, I want more. Why should the vial just be a vial? Why not build-in a high quality lancing device while you’re at it? We have to carry both a vial and a lance with us 24-7-365. Why not make it one unit? And I’m not talking about the cheap ticky-tacky plastic crap we’ve been living with for years. I want something wonderful: well-built of quality materials. I will gladly get out my wallet and pay for that. And for a two-in-one, I might even give up flat—so long as it isn’t bulky. It could look like a quality fountain pen and I’d be happy. In fact, why not a hinged “pen?” Lance in the bottom two-thirds, strips in the top third. And don’t forget my light inside. And you should probably give me a second light on the lancing end, too. With a well-made clip, a pen-style vial and lance device could be carried in a shirt pocket, a purse or go-bag, a meter case, or just about anywhere else.

And just like quality pens, it could be either spiffy hi-tech or old world wonderful. I know a lot of people would go for hot-rod red enamel lacquer or a pattern-etched stainless steel. Personally, I’d like one with the exotic wood, like Cameroon Zebrawood. Or maybe Macacauba Monkeywood.

We need both function and style, and there’s no reason in the world we can’t have both.

And think about it, the vial and lance is the single universal need of all people who have diabetes. That means a huge market exists for the clever person who fixes the vial and lance problem for us. We have a vast variety of meters we can’t choose from, as we can’t afford to use a strip our insurance won’t cover. But something wonderful that we only have to buy once? Screw insurance, we can afford that no matter what.

Trust me, if you build this, we will come. And we’ll reward you with our wallets and purses.