Return of the “???” monster

The bane of many a Dexcom 7 Plus user was the infamous triple question mark icon:

???

Officially, it meant that the receiver couldn’t understand the signals coming off of the sensor. Basically the receiver was asking the CGM sensor, “What the fuck are you saying?” Of course users would also start off by asking the receiver, “What the fuck?” and end (hours later) by screaming at the receiver, “WHAT THE FUCK?!!!!!”

Naturally, the dreaded triple-Q icon showed up at the worst possible times: when you were going to bed with a ton of insulin on board, when you had the flu, were getting married or divorced, going to prom, or competing in a pie-eating contest.

A triple-Q could last for... well, that was the crazy thing. It might last 15 minutes. It might last an hour. It might last six hours. It might go on forever. For me, being hypo unaware, I’d pull the plug after four hours. Longer than that was just too risky for my body and too much for my nerves.

Of course you could try feeding the system more fingersticks to snap it out of its funk. That’s what we all did, even though the manual said not to. And you could try shutting the sensor down and restarting it, but then you had the whole two-hour start up thing with no guarantee it would work. It was frustrating, scary, and highly vexing. You never knew when, or if, you would get one.

The triple-Q was also the harbinger of transmitter death. Yep. The only way you knew your transmitter was giving up the ghost in those days was a combination of ??? and crappy readings. That’s one big improvement of the new G4. It will tell you when the transmitter is starting to crap out. There will be a pop-up screen, so they tell me, and you can always go Main Menu >> Settings >> Device Info, and there it is, third from the top: Transmitter Battery.

Mine is still OK, although it’s getting a little long in the tooth. My G4 was in the first wave shipped after FDA approval back in late October of last year. That means it’s about 6 and a half months old. In transmitter years that’s geriatric. It doesn’t have long to live. In one of those Deals with the Devil, the engineers at Dexom agreed to the following pact with the Prince of Darkness: Give us power over long life. To get the marvelous new transmitter range we all love (and demanded) they had to sacrifice how long the thing would last.

I chatted with the friendly Dex crew at their booth at the AACE meeting in Phoenix a couple of weeks ago, and they are preparing their souls for the inevitable flood of calls and fights with insurance companies now that we are six months post-launch.

Fights? What fights?

Well, even though the G4 prescription clearly states that a second transmitter at six months is part of the deal, the Dex gang aren’t sure how the insurance plans will really react as this starts to come up for the first time. The folks at Dex are expecting some rough water until everyone gets onboard with the tides of the new world order.

OK, I promise to give up on nautical metaphors.

But back to triple-Q. When the new G4 arrived, I was disappointed to see the triple-Q icon was in the manual. (Yes, I actually read the manual cover to cover.) But that said, for months and months and months I didn’t see one. I began to think I wouldn’t. Then it reared its ugly little head back in mid-December, ironically on my sister’s birthday. Yeah, I know, I should ‘a posted about it. I can’t remember why I didn’t.

Then in Arizona two weeks ago, this happened to me:

And, yes, you read that right. The time on the lower right of the monitor is correct. Of course this happened at 5:35 in the morning. Mountain Daylight Time. Which Arizona doesn’t observe. It was 4:35 in the morning local time. Damn it.

Did the triple-Q wake me up? No. It’s a silent killer. You only know you’ve got it when you look to see your blood sugar and see that you can’t see it. What woke me up was the sensor suddenly thinking I was at 50 mg/dL and about to die shortly before the stupid thing crapped out. (I wasn’t at 50 mg/dL and I wasn’t about to die.)

Anyway, as my transmitter is geriatric, I worried that this latest triple-Q might be the first sign of an impending transmitter heart attack, transmitter stroke, or other form of transmitter death. So the next morning… actually later that same morning, but after the sun woke up… I asked one of the tech guys at the Dex booth about it, and he told me that, no, the triple-Q isn’t a sign of a dying transmitter anymore. Once the transmitter gets to within a week or two of its death, it will signal the receiver and you’ll get a pop up telling you to call customer service for a replacement.

So the triple-Q is still with us. Less common than before, in my experience, and the few times I’ve gotten them they haven’t lasted very long. And now the triple-Q is no longer a harbinger of transmitter death. But it’s still vexing that every once and a while the receiver can’t understand what the sensor is telling it. WTF?

Bottom line, same monster: Just a bit tamer.

Us and Them

The endos are all staying at the Sheraton Downtown. I, however, am twenty-two blocks away. At the Motel 6. On the south side of the motel is the railroad track. Every night freight trains rumble through, setting off all the car alarms in the neighborhood. On the east side of the motel is the threshold of runway 08 of the Phoenix Sky Harbor international airport. The deep-throated roar of airplanes is not quite constant, but close to it. That’s OK. I like airplanes. Just to the north of my motel is an abandoned building that used to belong to a physic. She’s now out of business.

Funny. You’d think she would’ve seen it coming.

But this gulf in geography turned out to be the least of the differences between me and the endos. You see, silly me, I always thought that physicians were supposed to love their patients and hate the diseases that plague them, not the other way around. But as I learned this week the endos, as a group, love diabetes and hate us.

That’s the number one take-home message I got covering the 22nd annual scientific and clinical congress of the American Association of Clinical Endocrinologists in Phoenix for Diabetes Mine.

What I saw at the convention, time and time again, was a deep fascination with anything that had to do with any scientific aspect of the disease, accompanied by a very short attention span for anything that had to do with patients.

Some of it you have to expect. Of course they get swept up in the excitement of the mysterious underpinnings of the disease process. One researcher was showing us images of microscope slides taken from the pancreas of a 12-year-old boy who died of DKA. The scientist was thrilled because the pancreas had been removed and frozen right after the boy died, giving a snapshot of raging onset diabetes at its dark nadir. The clinicians were equally enthusiastic.

I was appalled.

No one, not one of them, expressed the slightest thought about—or awareness of—the human tragedy behind this pathology sample. A shattered family. A young life cut short. No word of thanks was spoken to the parents who donated the organ in the face of this great tragedy, no doubt in the hope that their nightmare wouldn’t be repeated for other parents.

From surgeons, I would expect no better. Surgeons are cold fish, almost always. But from endos, who see their patients again and again for years and years, I expected better.

But cold, distant, uncaring docs—or ones swept up in the intellectual excitement of the latest genetic research—I could probably have tolerated. What really disappointed me was the way they talked about us. Frankly, they acted like diabetes educators. They made snide jokes about their patients, complained bitterly about us, blamed us for all their failures, showed no sympathy or understanding for what it’s like to live with this disease, and spent a lot of time basically just dissin’ people with diabetes. I don’t think I’ve ever spent a whole week with such a big group of anti-diabetic whiners in my life.

Towards the end of the conference, I was offered a free ticket to the “gala ball” and dinner. I passed. Company like that I can do without. I drove back across town and spent my evening alone in my dingy little motel room.

With the rumbling of trains and the roaring of planes for company.

Another Kleenex moment in the trenches

Flipping through his blood-sugar logbook was like using one of those cartoon flipbooks where the horse runs across the top of the page. The slow changes, logged a day at a time, became a gallop when time was accelerated by the turning of the pages. It was fascinating. And horrifying. Sickening, actually, as the full impact of what I was seeing dawned on me: I was watching his death in slow motion.

In the summer of 2011 his morning fasting sugars were running in the 120s. By early 2012 they were generally over 200. By the fall of last year 300s where the rule. Now, in the 400s.

His doctor told him to take his medication. So he did. Every day.

His doctor told him to test his blood sugar. So he did. Every day.

But no one ever took the time to tell him what the numbers meant. When to worry. When to call. Apparently, no one ever looked at the numbers he carefully logged every day and took with him to every doctor’s visit, either. That made me mad.

More than mad. Angry. Furious. Enraged.

Here was a guy who did everything he was told to do, but was let down by the system he placed his trust in. Next to his logbook on my desk was the little cash register receipt-like printout from our urinalysis machine. There was protein in his urine. LOTS of protein. His kidneys were failing. It fell to me to tell him. It fell to me to teach him for the first time the vocabulary of numbers. To explain to him the truths revealed when you listen to what the numbers say. To explain to him why meeting me was too little, too late. To explain to him why we were giving him a nephrology referral.

I wish someone had sent him to our clinic three years ago. Hell, two years ago. Or even six month ago! Then maybe I could have made a difference. But it was too late. He’s another casualty in the war we call Diabetes. A solider who was given a gun, then sent into combat with no training. No ammunition. Now he’s become another diabetes complication statistic. But to me, he isn’t just a statistic. Not just another number. He is a man. A scared man, with a kind face, and sad eyes.

This is diabetes in the Real World.

And on days like this I don’t know whether to cry or to scream.

Why I’m not signing the petition

I just got a heart-felt letter from Jamie Perez, one of two moms of kiddos with type 1 diabetes who are leading the fight to change the name of our disease. These two ladies are hardly the first to argue that the sister diseases of type 1 and type 2 diabetes are poorly named, but they are the first to successfully launch a grass-roots effort to try to actually do something about it. They’ve collected over 3,000 signatures on an online petition to the American Diabetes Association, the National Institutes of Health, and the International Diabetes Federation; and in the process have ignited a wildfire of passion and controversy.

This is not the type of situation I’m known for shying away from.

Their motivation, to quote from the petition, is that their sons are “subjected on a daily basis to ignorance and misconceptions.” They note, correctly, that the mainstream media frequently gets the two types of diabetes muddled. This dynamic duo believes that if the names of diabetes were revised to “more accurately reflect the nature of each disease,” it would “alleviate the confusion.” They think this would be to the advantage of type 1s and type 2s alike.

Jamie was writing to me to ask for my support in this effort. Oh, and not only did she write beautifully and passionately, but she made matters worse by telling me what a big fan she is of my writing—and as everyone knows, I’m a huge sucker for a compliment.

So it was with no small amount of guilt that I had to write her back, thank for her compliments, salute her for her passion, but to respectfully pass on joining her in this fight.

I’m not going to sign.

And I have four reasons why I’m not going to sign. Now, I’ve known about this petition for a bit, and even wrote about it in a roundabout way for Diabetes Mine. I did the background research into the last several times the names of diabetes were changed. And while our coverage, which Jamie felt placed her efforts “in a negative light,” has generated a ton of comments—more than 100 as I’m writing this—I have not read even one of these yet. Nor have I read any of the detailed posts written by my fellow diabetes advocates; both for and against the effort. I will. Eventually. But I thought I’d better commit my thoughts to paper first. I’m sure I’ll find myself tugged back and forth by the passion and wordsmithing of the opposing sides.

But think about what I just said.

Opposing sides? Since when? Since when should there be sides? Aren’t we all in this together? Apparently not. And that’s the first reason I’m not signing.

First: Look at what this is doing to us. We are fighting among ourselves. It’s a fucking diabetes civil war. We have bigger and more important battles to fight. We should be using our energy to combat public ignorance, legislative ignorance, and media ignorance—not fighting each other. Also consider, my brother and sister type 1s: So you feel bad when some idiot mistakes you for a type 2 and thinks you gave yourself diabetes by eating too much? Maybe you’d better do a knowledge check. Type 2s don’t “give themselves diabetes” any more than you did. How do you think they feel when exposed to the same cruel ignorance? You type 1s who want to ignore part of our family had better look into your hearts, or at least into a good medical textbook. The flavors of diabetes overlap, blend, and mesh much more than most people realize. Hell, if you really want to rename it, the only thing that makes sense is to drop the type 1 and type 2 and just call it Diabetes. Or maybe Fucking Diabetes. That would be more accurate. And much more fun.

Second: Changing the name would not cure pubic ignorance. Neither would it educate the mainstream media.

Third: It most likely can’t be done anyway. The petition is going to the wrong outfits. Who says the ADA, NIH, and IDF could change the names of diabetes if they wanted to? Diabetes is global. If you want to change the name, you really need to talk to the World Health Organization. And if you think our politics are bad, we are all bush-league compared to what you see there! And if the WHO did agree, beyond the three organizations petitioned, they’d also need to get the following on board: the JDRF, the two big groups of endos, the AACE and the ACE, not to mention the European Association for the Study of Diabetes, the Australian Diabetes Society, and the prestigious Japan Diabetes Society. And what about professional diabetes organizations in India, China, and elsewhere? Even if the three petitionees had the power to make all the other organizations toe the line, let’s not forget that they can’t even agree on a symbol for diabetes at large! Can you imagine the fights, egos, politics, and turf battles involved in choosing the new names? Getting all these organizations to agree on anything would require the same kind of miracle that it would take to get the US congress to pass a law!

Fourth, and most importantly: If, in the unlikely event this effort were successful, I fear it would have an unintended consequence for us type 1s, and for the two children whose experiences started this. Piggybacked onto the pandemic that is type 2 diabetes, we type 1s have some clout. If we get re-named, re-branded, re-invented, we just become another oddball rare disease. One unworthy of awareness, research, protection of law, or money. We’d risk becoming a fringe disease that only those who have been touched by it have ever heard of.

Globally, compared to other diseases, by ourselves, we type 1s just aren’t all that important. On the other hand, being in the shadow of an epidemic that casts a long shadow on the economies and societies of nations is to our benefit.

A portable typewriter for the modern correspondent

Yes, she’s pretty and she can type. Or more correctly, I can type on her. That sweet little thing above is my “new” refurb’d Apple iPad mini with the ultrathin keyboard cover from Logitech. The cover, billed as the “the other half of your iPad mini,” is a folding iPad cover featuring a “real” keyboard, which dispenses with the touchscreen nonsense when it comes to writing something. Perversely, I view the iPad as the other half of my keyboard; instead of the keyboard being the other half of my iPad. Here’s the story…

A while back my laptop died. I couldn’t feel too bad about that, after all, it was one of the original laptops. It was actually the one Moses got from his dad. It was big enough and heavy enough that a lap-dancer could’ve done her act on it. As a matter of fact, that’s why I thought they called them laptops…

Anyway, as I have to carry so much crap around with me just to stay alive, I can’t abide heavy computers. Or thick computers. Actually, I can barely abide computers at all. But I have a job coming up that’s going to require some posting from the field (more about that in a minute) so I had to go computer shopping.

My requirements for a replacement laptop were: light, cheapish, light, thin, and light. Oh yes, and light. Now, a while back, I had a clinic-owned Sony Vaio “P,” but it’s since been retired. Frankly, I don’t miss it much. The screen was too high res. Even with my tri-focals I had a hard time reading it. And the keyboard was badly designed. It was too easy to bump the arrow keys and all the sudden find yourself typing in the middle of the previous paragraph. It was light enough and small enough, but it was already off my list—as a machine to write on it was no damn good. In fact, about the only thing it was good for was as a chick magnet. If you want to make new friends, just take a Sony Vaio “P” to a Starbucks… Actually come to think of it, it was more of a nerd magnet than strictly a chick magnet. If I were bisexual, I would have had it made totally with that computer in hand.

So after looking at netbooks online (no time to drive 150 miles roundtrip to the nearest BestBuy) and being underwhelmed, I remembered reading that Logitech was making a keyboard cover for the big iPad. I type most of my work on one of their better-than-sex Wave keyboards, so this company is pretty dear to my heart. I also vaguely knew there was a smaller iPad so I wondered….

Well one thing led to another and I ordered an iPad mini. And before you ask, I just got the wireless version. And I got the smallest memory. Hell, it’s just a typewriter, people. I don’t even have a second page of “aps” on it yet, and probably never will. Oh and I choose white over black because I’m a medical correspondent and all…

Speaking of white, I had a few white-knuckle moments during the four days waiting for the little white computer to arrive in a little white truck. Would the keyboard be too small? Would my fingers wander, or get tangled up in each other? Would the keys be nice and springy or mushy like rotten fruit? Shopping online can be so stressful. Shoes you should try on. Cameras you should hold in your hands before choosing. Keyboards you should type on. There are some things you should just buy in person, if you can make the time to do it.

But I’m happy to report that the ultrathin keyboard is like a well-designed studio apartment. Yeah, it’s cramped, but the space is well used. It’s a good typing machine. And truth be told, it’s only about half an inch narrower right-to-left than a desktop’s keyboard, and about the same top-to-bottom on the letter keys. Of course the number keys are preemies, but that doesn’t bother me much.

Oh, it’s blue tooth (better than blue something else). The charge on the keyboard is said to last three months. We’ll see. When it’s working as a cover, it snaps right onto the iPad with a long, thin hinged magnet. Rio has said at least five times, “But I thought magnets were bad for computers!” Yeah, me too, son.

Closing the cover turns the iPad off. Opening it turns it on. Pretty clever. When the keyboard needs to do its typing thing you pull the cover off and drop the iPod into a slot that holds it back at a “perfect” viewing angle.

It works pretty slick, but I keep reaching for a mouse, then looking for a track pad. What the fuck? Oh. Right. Touchscreen. Just leave a greasy fingerprint wherever you want the cursor to go. The outside of the keyboard is aluminum, and looks just like the back of the iPad itself minus the shiny metal apple that Eve just took the bite of knowledge of good-and-evil out of.

Folded up, the keyboard and iPad look like Star Trek meets African safari. Slick, modern, and tough. Oh. Right. And thin and light. :-)

Wow. How my life has changed over the last year, tech-wise. A rechargeable glucometer, a digital B&W camera, a touch-screen insulin pump, and now this: a portable typewriter I could carry in the pocket of a pair of cargo pants if I wanted to. On the one hand, it’s thrilling. On the other hand, we are all one good solar flare away from extinction. Unfuckingbeleivable.

Now, I’d never want to do all my work on this mini/ultrathin, but it’ll be a nice reporter’s tool when I’m out in the field. The keys are lively, and while pretty much flat on their tops, they have enough separation between them that my fingers don’t wander off on to the wrong keys causing me to type Zmpe od yjr yo,r gpt s;; hppf ,rm yp vp,r yp yjr sof pg yjr vpimytu/ when I intended to type something else altogether. I hate it when that happens.

What? The image on the screen of my new portable typewriter? Oh, that’s a picture of the Remington Streamliner. It’s one of the original “portable” typewriters, circa 1941. It tips the scales at 10 pounds 9 ounces. “Streamlined” it stands about 5 inches off the desk. My new baby weighs 1 pound 2 ounces. And talk about streamlined: Folded up and ready to carry, the iPad and its case/keyboard are only one-half inch thick. It’s about the size and weight of my orginal Kindle, and I can slip it into the back pocket of my Go-Bag—right now a Domke F 803 Satchel.

To complete the package, I picked up a copy of Apple’s Pages, a $9.99 word-processing “ap.” Compare that to the 150 clams a new copy of Word will set you back. I found the software simple and elegant to use, and I can email myself a copy of any document and it opens on my desktop PC as a writing industry standard Word file. Awesome.

Of course I did dither over whether or not to get the full-sized iPad. It would have given me a full-sized keyboard. But it would have been at the cost of 17 more ounces. That’s an extra pound + to carry. Plus it’s thicker. And bigger all the way around. More dinero, too, and no matter how hard I work I never seem to have enough of that.

And where am I going with my new typewriter? To Phoneix at the end of this month. I’m covering the 22nd Annual Scientific and Clinical Congress of the American Association of Clinical Endocrinologists for Diabetes Mine. I’m gonna use my new computer to write posts in the evenings from the Motel 6 at the end of the airport runway. I’ll also send updates for my editors to tweet (I always feel guilty when I get an email saying that someone is now following me on Twitter. I think, boy are they ever gonna be bored… I only “tweet” about once a month).

I might even take a whack at using the mini to take notes during the seminars. Out of years of habit I generally take notes in a small spiral-bound notebook. But the last big conference I was at, I was surrounded by the clacking of keys and I had the only pen in the room… and I had to wonder…

And who knows? Maybe I’ll also check and send email on it. And Skype home to see how the family is doing. And shop on eBay, and maybe even surf for porn.

Hah! Just try doing any of those things on a Remington portable typewriter!

In defense of the F-word (again)

When Rio was about three or four, his maternal grandmother came to me, and speaking in a hushed voice, with eyes as big as saucers, said, “Rio used the f-word today.”

Huh. Well, did he use it correctly? I asked.

She froze, mouth open, stunned at my response. Then she paused to think about it for a moment, clearly reliving the conversation in her mind. She nodded slowly, and said somewhat hesitantly, “Well, yes…”

OK then. As far as I was concerned, the case was closed. Raised in a world devoid of peers, Rio’s mind works much like an adult’s. And while his reading skills are behind the curve, his verbal skills are off the chart. His teachers tell me they are amazed at his vocabulary. They say it’s like having a conversation with a college graduate, not a fourth grader who flunked kindergarten.

Of course, this comes as no great surprise to me. We are a verbal family: living, working and playing in a sea of words. We love words, and everyone on my side of the family is a working wordsmith. Family get-togethers are like Scrabble, Password, Boggle, Hangman, and the New York Times crossword all rolled into one. Over dinner we banter, duel with words, twist them in circles, and deploy them in word-play jokes. It keeps our minds sharp and our hearts young.

And any good vocabulary needs to come armed with an equally good portfolio of profanity.

Now eleven, Rio has a pretty impressive profane vocabulary. He actually swears more judicially than I do, and more intelligently, too. I’m guilty of fucking swearing without fucking thinking about it some of the fucking time. My son, either with the world’s quickest mind, or instinctively, chooses the appropriate level of profanity demanded by the situation. He still uses the f-word, but rarely, and only when appropriate. And he’s also situationally aware, as well; he won’t say things in school that he might say at home. Smart kid.

And Rio and I aren’t the only ones. The world has changed. Do these words even count as profanity in 2013: ass, bastards, bitch, crap, jackass, and piss? Or consider how often you hear one of George Carlin’s once-shocking seven taboo words at the office or in Wal-Mart. In fact, I quite frequently hear all seven used at once at TSA airport screening points.

Now, my personal profanity portfolio includes the old standbys of the Anglo Saxons: damn, hell, and shit. On very rare occasions I use asshole. Oh and I enjoy a few made-up ones that I’m not sure even qualify as profanity, like frickin’ and Sci-Fi’s frack.

But I NEVER use the C-word, or any other profane slang that’s gender-moral specific like “ho,” or “slut;” or anything derogatory to sexual preference like “homo” or “faggot,” because I’m not a mean or bigoted person. And I almost never say “God damn” unless I really mean it, and then I’m usually deploying it against an insurance company. Used this way, it’s really more of a divine petition to the almighty, than a profanity.

Of course, as any reader knows, I have a great fondness for the word “fuck,” because it’s still edgy enough to carry some shock value, while not insulting anyone’s religion or risking the wrath of a deity. To be clear, however, I rarely deploy it in the way then Vice President Dick Cheney did on the floor of the Senate. I tend to use it as an adjective, exclamation, or a standalone noun. I rarely use it as a verb. I’m not one to advise someone else to get fucked or go fuck themselves. Although I just discovered “fuckwit,” for someone who’s being really stupid. I haven’t used it yet, but it seems like a fitting addition to my verbal arsenal.

Now, I confess to using fuck quite carelessly in speech and blogging. When it comes to blogging, well I’m pioneer diabetes blogger and the Wild West was full of bad fucking language, right? As to speech, I’ve found that working clinically with the poor, a good fuck goes a long way, so to speak. Being a greying tall skinny white guy with a stethoscope, I frequently get mistaken for a doctor. People get nervous around doctors, and aren’t themselves. They fear being judged. They don’t open up. They aren’t always entirely forthcoming. They hesitate to discuss their barriers.

There are literally hundreds of training programs for docs to try to teach them how to break the ice with their patients, and none of them work. But downloading someone’s meter and remarking, “Well, these numbers look pretty fucked up” will do the job in seven words, and in less than five seconds. It’s unexpected from someone in my position. It serves to break the tension, destroy pre-conceptions, and open new pathways for communication. It also serves to show that we are more alike than different. Most of my patients now freely drop f-bombs on me, too. As in, “This fucking diabetes pisses me off!” (Usually followed by an semi-embarrassed, “Please excuse my French.” You’re fucking excused.) Swearing at your diabetes is cathartic. Fucking as medicine, if you will.

Where I’m not fucking careless is when I’m writing a book. Books are different for me, and I take them VERY seriously. I craft my books carefully. I spend a lot of time on every chapter, every section, every graph, every sentence. When you see fuck in one of my books there’s a hell of a good reason for it. I’m drawing your attention to something. In one of my books, fuck is no late night comedy shock value prop, or careless exercise in venting. It’s a semantic slap in the reader’s face. I’m making you take notice. I’m demanding your attention because I’m telling you something important. Given my reputation for bad language, I think you’d be fucking surprised by how few times you’ll actually find the word “fuck” in any of my books. Go ahead. You need to re-read my books anyway. Count the fuckers.

That said, the use of fuck even once between the sacred covers of a book gets people riled up in a unique way. Particularly if it’s in a Hard Cover book. That’s academic sacrilege in many quarters. In fact, it has, no fucking kidding, got one of my books BANNED by the University of New Mexico for its “problematic language.” That pissed me the fuck off, but once I got over it, I realized that being the author of a banned book makes you a history-maker of sorts, and generally puts you in damn fine company. In fact, I should buy myself a “Banned Author” coffee cup over at Café Press, huh? Oooh! Or maybe a whiskey flask. That would be even more appropriate. Should it read “I’m a fucking Banned author,” or “Fucking proud to be a BANNED author”?

Oh. Wait. Right, I owe the fucking IRS too much frickin’ money to being buying any ego-soothing toys. (((Sigh))) Well, fuck…

By the way, the origins of the word fuck are unclear. It can be found in written documents at least as far back as the year 1475, but many fucking experts believe it’s older than that. After all, there’s no way to know how long it was in verbal use before someone had the courage to commit it to paper for the first time. And despite how people excuse unintended use of the word fuck, it doesn’t come to us from the French language. It might have come to us from German, or Norwegian, or Swedish, or Latin, or even Greek. Every fucking expert has his or her own fucking opinion about the fucking origin of fuck. How fucked-up is that?

Somewhat uniquely, fuck can serve as a noun, a pronoun, an adjective, a verb, an adverb, a command, a conjunction, an exclamation, or as part of a compound word such as motherfucker (not a version I use unless I’m talking about a politician). It also hyphenates well. Consider: fucked-up, in-fucking-credible, un-fucking-believable, or abso-fucking-lutely. It can also be placed in time. In the past someone fucked you. In the present they can be fucking with you. You can warn them not to fuck with you in the future.

Fuck also has some cousins such as the word fucker, which depending on how it’s used can be either an insult or a compliment. Consider the use of, “You dumb fucker;” versus the use of, “He’s one tough fucker.”


Fuck is also a component part of many acronyms like the classic SNAFU and FUBAR, both of which have military origins. Wikipedia dates both to World War II, but my grandfather, who was a vet of the U.S. Army Engineers in WWI, once horrified my then-goody-two-shoes sister when he asked her if she really knew what her new favorite word—snafu—meant. They used it in the trenches. Literally.
Fuck also mixes well in unexpected combinations. Consider: fuck this, fuck that, or holy fuck (called a “liturgical profanity” by fucking experts).

What’s not to love about a word with such awesome semantic utility!

And I’m not the only one who loves a good fuck. Let me tell you about my fucking patient. She’s a type 1 like me, and about my age as well. She’s super-smart, being a college professor and biological researcher (ironically, given today’s fucking subject, she’s a sperm expert, but that part of the story will have to wait until another day).

Where the fuck was I? Oh, yes. So she’s on a pump and CGM, but still has trouble keeping her fucking diabetes in control. For decades she’s kept a diabetes journal. She started it right after her diagnosis, but she’s yet to run out of pages. In fact, it’s still half empty. That’s because, like many of us, she has a hard time keeping motivated. She’d journal her diabetes for a few days then throw in the fucking towel for months. That was until her doc, at another clinic, sent her to me.

I see her about every two weeks, and when I go to fetch her from the lobby she’s always writing in her journal. I’m privileged that she’ll often share what she’s written with me. One day recently this is what I saw:

I loved it so much I asked for her blessing to photograph it and share it with the universe. Right. It’s just the word fuck written over and over and over again. But what’s so fucking great about it is that she’s hand-written it in different type fonts! I don’t think I’ve even seen anything quite like that. Anyway, it gets my vote for the new National Anthem of Diabetes.

I just need somebody appropriately fucking talented to set it to music.

When the compass points south

My navigation through life is based on a five-pointed compass: The five cardinal things that make up 90% of my life. They are:

My family.
My diabetes.
My clinical work.
My writing.
My university work.

Normally, two of the five suck at any given moment and give me total stress. But at the same time, normally, two of the five give me great joy at any given moment. And normally, the fifth one is somewhere in the middle. All told, this keeps my universe in balance.

But the last six weeks or so hasn’t been normal. No, it’s been a perfect storm of all five sucking. I was stressed on all fronts. It wasn’t pretty, and I was in an extremely dark space. But the normal balance has been restored as mysteriously as it went out of whack, and I have no scars on my wrists to show for it. See? Even my dark sense of humor is fully recovered!

So anyway, in the middle of all of this, on February 27, I broke my New Year’s Resolution. Right. The one about how I was going to post every Wednesday. Well… two months is a pretty good run for a typical American New Year’s Res, right?

But since you haven’t heard from me for a month, some updates are in order before we get back to work. Some of you may recall that over at Diabetes Mine I had said I wasn’t sure I would stay on the Tandem t:slim pump because I was so vexed with the number of “are you sure” warning screens between me and my insulin. I was beginning to think I’d be better off, and less stressed, just going back to MDI.

Well, I’m still on the pump, but it was a damn close thing. Here’s how it went down: One night, after a particularly annoying day, at the end of a particularly annoying week, in which all this high-tech feldercarb I wear wasn’t doing me a damn bit of good, I had a classic DHF—a Diabetes Hissy Fit. I ripped out the infusion set and threw the pump in the corner. Hah! Take that fucking FDA and your fucking over-protective meddling design-for-the-safety of the stupidest diabetic on the planet requirements! I’ll show you!

I rummaged around in the fridge, muttering a continuous string of profanities, expletives, and curses until waaaaaaaay in the back I found a vial of Levemir and one single unexpired Humalog cartridge for my Luxura insulin pen.

Then the first problem reared its ugly head.

Apparently we’d moved my Luxura pen into storage during some first-of-the-year house cleaning. Crap.

Well, fine. I’ll just suck some insulin out of the cartridge with syringes until I can get to town. Where are the damn syringes?

Oh. Right. I donated every last one of them to needy patients at my clinic. Double damn. No way to take the Humalog or the Levemir.

I had to go get the pump back out of the corner and put it on again, swearing that after the weekend I’d pick up everything I needed at the clinic and be done with the meddling over-protective piece of shit once and for all.

But that day turned out to be the critical tipping point. Four days later, sitting in my office with boxes of syringes and three Luxura pen samples steps away, I’d gotten over it. The hissy fit had passed.

That doesn’t mean that I’m exactly in love with this pump. No. Far from it. But we’re getting accustomed to each other. I still find the slowness of the tube fill to be painful. The touch screen doesn’t always like my fingers. The number of warning screens still drives me batty, but I’ve learned to sail right through them without looking at them—totally defeating their purpose. And I still hate the fact the reverse correction doesn’t kick in until 70 mg/dL.

But I do like the fact that I don’t have a low every morning at 10:30 anymore, something I couldn’t really avoid on the basal shots. In fact, I’ve lost four pounds from reduced glucose tab consumption. And while my blood sugar is far from perfect—and probably never will be—it’s not too shabby. Well… that’s my perception anyway. Let me plug in my CGM real quick and we’ll get the truth of the matter:

OK. I’ve seen worse. My average blood sugar over the last week was 142, equivalent to an A1C in the mid-sixes. I’m running some nocturnal and early AM lows the last few days, as I’m eating smarter recently. In fact, just yesterday I reduced the basal for the second time in a week and it reminded me of how much I appreciate the extraordinarily easy programing the t:slim sports. And speaking of lows, another thing I’ve finally gotten into the habit of is setting a 30-minute zero-insulin temp rate when I have a low. No more throwing fuel on the fire. You can’t do that with basal insulin!

Oh, and back to eating smart for a moment, I have to give a shout-out to the folks at KIND, who have done the next best thing to curing diabetes: They developed a line of gluten-free, natural ingredient, no sugar alcohol added, low blood sugar-impact food bars that actually taste good! They’re called the Nuts & Spices line. I’ll talk about them more in the near future, but just know for now that they are amazing. Yeah, I know that some of my post-breakfast trace lines don’t look too impressive, but those are days I was running low and didn’t bolus for the bars at all. If I’m in target in the morning, and bolus the net carbs, I can damn near flat-line my blood sugar! And they keep my hunger at bay until noon. The kind folks at KIND sent me some samples a while back, and I liked them so much I ordered a whole case online!

Anyway, now you are up-to-date. I’m more or less back, and I’ll try to post more often, but I won’t promise weekly posts. My April is looking pretty crazy. Just last week, one of the front desk girls, who was trying to schedule one of my patients for a follow-up, called me and said, “Do you realize you only have three open appointments left for all of April? And may I remind you that we are still in March?” Holy crap. Well, it’s nice to be popular.

However, just to whet your appetite, in the coming weeks I plan to talk about:

The return of the ??? Monster. Yes, the classic disease of the Dexcom 7+ can infect the new G4 systems, too.

The truth behind the t:slim’s power plug cover.

The secret story of the girl who says “fuck” more than I do.

The icon on the t:slim pump that’s actually a hidden button!

Why the new OmniPod will suck just as bad as the t:slim—perhaps worse—when it comes to federally-mandated over protectionism.

Why some of my books are beginning to speak for themselves; and what my relationship to the 34th best-selling biotechnology book in the country is.

And why my wife thinks healthcare reform sucks. Stay tuned.

Death of the Medicine Men

I don’t hate my job. Not really. But I hate what it’s become. Because back in the day, only a few years ago, I got to practice real medicine.

I’d better explain that.

I didn’t don a white coat and a stethoscope, diagnose diseases, and prescribe pills. Instead, I “practiced” medicine by understanding, educating, empowering, and motivating my patients. And I did that by spending the time it took get to know them as people, because that’s what you need to do to treat diabetes successfully. And I “practiced” medicine by taking the time to learn about my patient’s lives, too, because life gets in the way of diabetes. If your child just died, you don’t really care if you are checking your blood sugar or not. If the power company just turned off your electricity, you probably can’t afford your meds. If your boss sexually harasses you at work, you might not want to lose weight for fear of being even more desirable.

And I “practiced” medicine by getting to know my patients’ diabetes itself; because no two cases of diabetes, even type 2 diabetes, are created equal. Some type 2s have high blood sugar all the time, some type 2s have sugars that rise in the night, some type 2s have sugars that only shoot up after meals. Same disease. Different incarnations. And that means different solutions are required. A blind prescription pad is impotent. Diabetes treatment isn’t one-size-fits-all. Understanding the patients, their lives, their diabetes; and helping them cope with and conquer their diabetes made me a healer, I think.

It was glorious work. I was a detective, a social anthropologist, a counselor, a cheerleader, and a little league coach all rolled into one. I woke every morning excited about taking on a new day’s challenges. I slept well at night knowing I had spent my day actually helping people.

But now I don’t sleep so well at night. I dread the alarm clock, and I have to drag my ass out of bed every morning, because times have changed. I’m not “practicing” real medicine anymore; I’m not sure any of us are. Every few weeks our assorted masters at the federal, state, and local levels mandate new things we must do. We are told: You must create care plans on X% of your hypertensive patients or kiss your funding good bye. You must measure waist circumference or there’ll be hell to pay. You must print a visit summary before the patient leaves. You must… You must… You must… You must…

The “you musts” are endless.

Now I spend nearly all my time with my nose in my computer, charting all the required minutiae in all the right places. It’s no longer sufficient that I check a patient’s blood pressure. I must also enter it in just the right place. And I must check the box that validates that I have just checked the blood pressure and I have entered it in just the right place. And then I must, before I can go somewhere else in the chart—perhaps to make a note that the patient just told me about her boss sexually harassing her—I must weigh her and I must enter that information in just the right place. Oh and then I must calculate her body mass index, and I must chart that I counseled her on the fact she’s too fat, and I must print patient educational materials telling her she’s too fat, then I must make her promise to discuss it again in the future, and I must choose a date to do just that and I must chart that, too. In just the right place. Then, and only then, am I “free” to leave that section of the chart.

And on and on and on it goes.

At first this overwhelming flood of exacting requirements and new must-dos caused some push-back from the medical staff, who just wanted to make patients healthier. Then one of the middle-management people posted this sign on the wall:

Relearn, Relocate, or Retire.

So literally, the writing was on the wall. Way to motivate the troops. Caesar would be proud, no doubt. Or Kadafi. Or Saddam. But the sign did its job. Dissent evaporated. We put our noses to the electronic grindstone, not even realizing that the soul of medicine had just been sacrificed on the Altar of Must.

After months of generalized misery and persistent blues, I awoke this morning to the realization that I’m not having a conversation with my patients anymore. I’m not learning who they are. I’m not understanding the victories and defeats in their daily lives. I’m not bonding with them in a way that they will share their darkest fears and experiences with me anymore. I am neither educating nor inspiring. I’m not motivating, and I’m certainly not healing. I’m just interviewing my patients and recording their answers like a court reporter, rarely even having time to look them in the eye.

Now, instead of a Medicine Man, I’m a fucking bureaucrat.

And that realization depresses me beyond my ability to communicate. Perhaps its time for me to find another line of work. But this isn’t just about me and my job satisfaction. There’s something larger at stake here.

As a society, we’ve been down this path before with No Child Left Behind, a perhaps well-intentioned piece of legislation that ended up creating an environment in which educators could no longer educate our children; and all innovation, inspiration, and creativity was squashed as our best, brightest, and most passionate teachers as they were forced to teach to the test. It fully industrialized schooling—ironic, given it happened in the post-industrial age.

It has destroyed all that was best about American education. If you don’t believe me, just ask any veteran teacher if she’s happier, more satisfied, or feels more effective now than she was before Every Child Was Left Behind.

Why did I bring this up? Because, like education, the healing arts can’t be industrialized. One size doesn’t fit all.

Because practicing medicine to the chart is just like teaching to the test. And it could be the death of us all.

Bubble trouble

Somewhere I thought I read that the t:slim was supposed to be a bubble-free system. But I don’t recall where, and I can’t find it now, so maybe I was dreaming.

All I can find about bubbles in the official literature is the warning in the manual to be careful not to have any bubbles in the fill syringe when doing a site change. Well, duh.

Of course, your t:slim insulin lives in a plastic bag hidden inside a solid, dark cave of plastic where no eye can spy a bubble, should it lurk there.

But because I was bubble-deluded, thinking I had read it was a bubble-free system, I hadn’t been paying much attention to the issue until I had an unusual fit of boredom.

Now boredom isn’t usually an issue for me, as I’m an overworked workaholic. But a week or so ago I was actually lying on the bed doing nothing. My restless hands were fidgeting with my pump, running the infusion set tubing through my fingers. And that’s when I saw it. A stretch of clear space in the heart of the tubing. Then another. And another.

What the fuck?

Are those… are those… are those bubbles?

Now I’m totally on board with not adding any unnecessary chemicals into our bodies, but sometimes I wish insulin had a color dye in it. I don’t know about you, but I have a hard time seeing the clear insulin in a clear tube. And it’s even worse after I’ve worn the tubing a few days. As it gets bent, tucked, scuffed, and so forth, it develops a differential sheen that can be mistaken for a bubble.

So that was my first thought. They must be faux bubbles. This set was on its third day. (My skin freaks out under an infusion set after two days, but my insurance company doesn’t want to pay for changing my sets every two days, so I’m dealing with all sorts of skin irritation and trying to survive the third day by scratching frequently while I wait out a “prior authorization” for the number of sets I actually use.)

But these really, really, really looked like bubbles. To make sure, I marked one of the mysterious clear spots with a sharpie, placing a blue mark on either side of the mystery artifact and then biding my time, literally.

And sure enough:

The bubble migrated. It moved up the tube. There is air in my insulin sack. And that air is being sucked up by the micro pump. And that air is being sent down the infusion set tubing, taking up space where insulin is supposed to be. Damn it.

Now, in case you don’t know, the air is harmless in and of itself. It won’t hurt me, but where there’s air, there isn’t insulin. It displaces the insulin. That lowers the insulin volume I should be getting. So here, in the third day of the life of a set, I’ve got 3 bubbles each nearly an inch long.

That means I’m not getting the amount of insulin that I’m supposed to be getting.

Lovely. Just fucking lovely.

Well, whether I was dreaming or not about the bubble free system—even though I was lying in bed when I discovered them—these bubbles are no dream.

All thumbs

I’m all thumbs when it comes to running this stupid pump, and it’s causing me no end of trouble lately. For some reason, the shape and size of the t:slim, and the shape and size of my hands, conspire together to create an ergonomic environment where both my thumbs rest on the touch pad.

Like a teenager texting, I pump with my thumbs.

The problem, of course, is that the “keys” are small, my thumbs are big, and I can’t text for crap. The result? Lots of using the “back” button. As in back to change that 100 carbs I just entered into the pump to the 10 carbs I’m actually eating. Back to change that blood sugar of 258 to the 159 it really is.

Of course, if I could get into the habit of holding the pump in my right hand and using my left index finger to enter data, a lot of these problems would probably go away. Or maybe not. Even using one finger, I often hit the number below the one I had intended, a common issue according to one of Tandem’s train-the-trainers who recently visited me at the clinic. Apparently, it’s human nature to try to see the button you seek to press. I have no doubt that in the future our species, in addition to evolving a third arm and hand to hold our Apple devices, will evolve a transparent finger to solve this issue.

And no, before you ask, being all thumbs had nothing to do with my killer low. If it had, the pump logs would have shown it. And if the pump logs are wrong, then the pump is fucked anyway, and we’d be back to square one.

The thumb issue just requires me to be a little more alert whenever I use the pump, that’s all. But I’m guessing that people who have more touch-screen time under their fingertips than I do won’t have any problems at all. Will I adapt? I don’t know. If you are 70 years old, don’t own an iPad, smart phone, or Kindle Fire—is the t:slim the pump for you? Probably not. That said, I don’t think there’s a 70-year-old in the country who doesn’t own one of the three. Oh. Wait. There’s that one guy in Rhode Island. But he’s not diabetic, anyway.

Another thing I wanted to warn you about today is to never try to reprogram your t:slim’s profiles when you are hypo. Yes, in theory the mistakes that got you into trouble are still fresh in your mind, but your mind is not what it should be. You might, for instance, get AM and PM confused and wreck a perfectly good half-functioning profile by making changes to the wrong half of the day. And of course, you couldn’t restore those changes because you hadn’t written them down anywhere, your pump has no memory of the old settings once you change them, and you have no back-up files of previous settings on your computer, as the FDA hasn’t approved any software for your pump yet.

Of course this is all very hypothetical, I’m not saying it happened to me or anything like that.

Oh, and while I’m complaining, I just discovered something else that pisses me off about the t:slim. We made a gluten-free pizza last night. It was perfectly yummy, but it kicked me in the blood sugar just as badly as any other pizza (no fair, as I only had two small pieces). Anyway, like any good pumper eating pizza, I used a combo bolus. On the t:slim pump, this requires you to “flip a switch” on one of the many bolus confirmation screens that stand between your meal and your insulin. Once you do that, after then having to tap “next,” a new screen appears:

It has two buttons: one to tell the pump how much insulin to put on the table, and another to tell it how long to stretch the rest of it out. The default is 50/50 over two hours. My gripe is this: Like the Temp Rate, it doesn’t remember your last setting. It always comes back to the 50/50 two hour. Now in my experience, most folks who use combo boli tend to use the same one again and again. One of my faves is 65% on the table with a two-and-a-half hour run. That’s my go-to combo bolus for most occasions that I like to use combo boli for.

But noooooooo, Mr. Pump, who likes to remind me of every frickin’ thing at every frickin’ step, has no memory for my preferences. What frustrates me so much about this, is that it’s such a little thing for Tandem to have gotten right. And even if there’s a compelling reason why some people would be better off always starting at zero… well, 50/50… then why couldn’t we have had an option like this in the setup menu:

Choose remember last setting used
—or—
Return to default on next use

I know Tandem says they talked to something like 4,000 type 1s in designing this machine. I keep finding myself asking: Which 4,000? Or maybe they talked to the right 4,000—but just didn’t listen to them carefully.

The Tandem t:slim is like a mirage in the desert. It looks like cool, clear water—and then as you get closer it evaporates into smoke and dry dust. They come so close to getting everything perfect, then they fuck it up at the last moment. It just makes me want to scream.

On the bright side, I’ve learned some new things about the profile programming that are done right. First, as you’re getting your settings fine-tuned, if you find that you have a segment you no longer need, you can just delete it. Poof! It’s gone, and the pump simply connects the dots for you between the segments that were before and after the one you just deleted, re-setting the end time of the previous one automatically. Cool beans. Second, you can very easily change the time of a segment by just tapping on the time and changing it. For instance, if you decided you wanted to move a basal step forward in time one hour, thanks to something you noticed while carefully studying your CGM downloads, most pumps would make you add a whole new step to do this. On one popular pump, you can’t even insert a new step, you have to reprogram every down-stream step that follows. Quite the time-consuming and frustrating process.

Oh, and speaking of frustrating, I wanted to give you the epilogue on my last two posts. Tandem hasn’t been sitting idly silent in the shadows. They’ve been very proactive about reaching out to me about the issues. How does their approach compare to other pump companies? Are they doing everything they could? Everything they should? I’ll let you be the judge of that, but here’s where we are to date:

Customer service intervention number one: Shortly after my killer-low post, one of the Tandem brass called me. His first question was, “Are you OK?” His second was, “How do you feel about the way our customer support folks treated you?” We chatted for a time about how bizarre the event was, but he was 100% sure that the pump couldn’t be behind it. It must have been me. Hmmmmm…. I think that’s what the folks at Med-T told me a time or two…Or three… Or four… Or five… And he assured me that they were a different kind of medical device company, by and for dFolks. I’ve heard that before, too. But he said something very poignant, in terms of being confident that the t:slim pumps worked the way they are supposed to. He said “Hell, our children wear these pumps.”

Customer service intervention number two: I got a call from a nice young man at Tandem last week, shortly after the severed lifeline post ran. He was wanting more details about the incident, the lot numbers, have I had any other troubles, etc. I admitted I didn’t know if my pocket-carry method was putting too much of a strain on the connection. He was adamant that it should be “stronger than that,” and that Tandem was keen on trying to find out why this one failed. Did I still have it? As a matter of fact, I do have exactly one-half of it: the cartridge. I pitched the female luer lock with the set. Half was better than nothing and he asked if I’d be willing to send it back so they could analyze it. Sure thing. And he said that while they couldn’t do anything about the forty-two bucks worth of lost insulin, they could send me a whole box of cartridges to help make up for it. Who would say “no” to an offer like that?

But I hesitated.

I hesitated, because I’m not sure I’m sticking with this pump for much longer. But not for the reasons you might be expecting. It has nothing to do with the mystery killer-low, which even I’m not convinced was caused by the pump. Why am I close to throwing in the towel on the t:Slim? You’ll have to go over to Diabetes Mine tomorrow morning to read all about that.

But my mind is not 100% made up yet, and my health insurance plan self-destructs in ten months. I have no idea how well whatever health plan I get next will cover pump supplies. If I do stick with t:Slim I might need every cartridge I can get my paws on. So naturally I accepted the box of cartridges.

Diabetics and squirrels have a lot in common in this regard.


Next time: Bubble-free system, my ass!

Another low

Ironically, it’s Ground Hog Day. For real. As in varmint, sun, clouds, winter, and all of that stuff. But I’m thinking more along the lines of the Bill Murray movie by the same name. Remember that one?

What happens?

He lives the same day, over and over and over and over and over again. And nothing ever changes.

The Ground Hog Day low started like the last one, only later in the night. Once again, the low coasted onto the scene. A slow steady drop all night long, the CGM trace finally dipping it’s toe into the cold water of a hypo at a few minutes after five in the morning. The Dexcom woke me with the news.

In the old days (before last week) I would have suspended the pump for fifteen minutes, using a Temp Rate, drunk a half bottle of Dex 4 and rolled over and gone back to sleep.

But once bitten, twice… or perhaps one hundred times… shy. I suspended for an hour and a half and drank the whole bottle. I bet you can guess what happened next.

Right. The fucking Ground Hog does not have diabetes. Nothing ever happens twice the same way with diabetes.

The low promptly reversed. An excursion set in, and my sugar surged 100 points like a freight elevator.

Not that I’m complaining this time. I’ll take an over-corrected hypo over one that won’t turnaround any day. Meanwhile, the sun is up at my house.

I guess that means six more weeks of whacky blood sugars.

Severed lifeline

[Note to readers: this little miss-adventure happened, was written up, and scheduled before the BIG event I posted about on Monday. In keeping with my New Year’s Resolution to post every Wednesday, I’ve decided to go ahead and let it run, but just know it is out of sequence and happened before the killer low.]

I was freezing my ass off. Literally. And my hands. And my nose. And my toes. I could see my breath, cigarette smoke-like, hanging in the frigid air.

No, I wasn’t out on some Artic adventure, I was in my frickin’ office. The janitor had unplugged the heater. The outside temp was 1° Fahrenheit. The inside temp was 1° Fahrenheit. It was so cold my computers didn’t want to start. The faux leather of my chair stung my skin through my jeans. The frozen keyboard burned my fingertips. My aluminum clipboard was a knife.

It was time to abandon ship. Today, I’d have to find a spot to work in the main clinic. I grabbed my stethoscope and discovered that it was, like the carcass of a snake that had been run over on the highway the night before, stiff as a board.

So the day was off to a great start even before it all went to hell on me. The really crappy part of the day started when the rise rate alarm went off on my CGM.

Groan….

So I fished Mr. Pump out of my pocket to take a correction, and that’s when I discovered:

Massive life support failure. My tubing had snapped. My pump was pumping insulin into my pocket, rather than into my body. I’m sure an astronaut would have the same sort of emotion if he (or she) noticed his (or her) air hose drifting by his (or her) helmet.

We really need a gender-neutral pronoun in the English language.

But back to the story, because I haven’t even gotten to the interesting part yet. In lieu of the traditional syringe-style insulin reservoir, the t:slim has a bag-in-a-box, like cheap wine. Connected to this box is a short length of tubing, about an inch-and-a-half long. At the end of this run of tubing is a female Luer lock hub. It’s actually one of the more bizarre design elements of the t:slim. Every other pump has you hook your infusion set right to the reservoir on the pump.

Tandem and their assorted reps are a bit vague about this design oddity. I’ve heard that they did it to keep the pump slim, but I don’t think it’s so slim you couldn’t have come up with something else. The male side of the Luer lock is not something a porn star would be proud of. Frankly, it’s pretty thin and a bit short.

I’ve also heard that female dFolks with babies asked for this feature so they could more easily carry their papooses on their hips without worrying about delicate baby skin getting scratched by a pump-mounted hub. While I acknowledge that this might be a (rare) side benefit, I have a hard time believing this was really considered in the design phase. To me, it sounds more like the marketing department trying to make lemonade from lemons, after the fact.

Actually, before buying the pump, I worried a bit about this oddball tube-and-hub; but like many t:slim things, in practice, most pre-purchase worries evaporated for me. The oddball location of the hub hasn’t been an issue for me. At least in the winter. But I’m still worried about the summer.

For you to understand why I’m proactively seasonally concerned, I have to detour and talk about my wardrobe. And to do that, I have to talk about my environment, because that dictates my wardrobe. I live a mile above sea level in a dry desert. Summer temps at my house are often in excess of 100 degrees. In the shade. But in the winter it’s freezing. Literally. Like in damn-fucking-cold freezing. So in the winter I favor heavy jeans. Wrangler brand, if you must know. But in the summer Wranglers are too frickin’ hot. In fact, at home, where keeping inside temps below 85 in the summer is a challenge, I generally wear shorts. But at work, shorts are verboten. And as I have a lot of crap to carry, being diabetic and all, I’ve taken to wearing cargo pants in the warm months. They are thin, and they have a lot of pockets to carry said crap. So it’s win-win.

My point here is, so far, I’ve only worn the pump with jeans. We are still months from the cargo pants season. And as I’ve already got a CGM on my belt, and a pouch for my meter, I really don’t feel like adding one more thing to my waist. Although the various t:slim cases and clips look highly serviceable, I’ve yet to test-drive any of them. I’ve just been carrying Mr. Pump in my front pocket, on the right-hand side, and all is well. Oh, and my pocket is deep enough so the stupid hub is hidden from view, inside my pocket.

But cargo pants have a whole different pocket design. The front pockets tend to be deeper, and the tops of the pockets are farther from the waistline. I suspect the pocket-carry won’t work well for me with cargos—the pump will be too hard to fish out—so I’ll need to go the belt route. Of course, with cargos, I have a bunch of pockets on the legs for the meter and such, so there is more real estate on the waist at that point. But come summer, my hub will show, and I’m not sure how I feel about that.

Now, why did that sound vaguely pornographic?

Anyways, now that I’ve bored you to tears with fashion and climate, let me tell you what really sucked about this broken tube. Now, I gotta say, despite being hung up on countless door knobs over the years, I’ve never actually broken a hose. I had one spring a leak in my sleep once, nearly killing me via DKA, but I think a cat was to blame for that.

But look again at the photo. The tube has pulled out of the pump side of the hub. The infusion set itself, and its tubing, is intact. The severed line is between the reservoir cartridge and the female Luer lock hub.

In other words: no quick fix. Actually, no fix at all. The reservoir (brand new and filled to the brim with 300 units of 0.14¢ per unit NovoLog, of course) was shot to hell. There was no way to salvage it. I had to do a reservoir change… and you remember how long that takes, right? Plus, for whatever reason, once my umbilical cord was cut, the infusion line filled with air bubbles, so I had to do the whole kit-and-kaboodle. Luckily, even though I only lasted two days as a Boy Scout (a story for another day), as a proper D-Scout I’m always prepared and had everything I needed for a site change.

Well, everything but time.



Next time: Fat Finger Fuck-ups, a.k.a. F to the Third Power; and why you shouldn’t re-program your basal rate when you are hypo.

Adverse pump event, or the ultimate in bad fucking luck?

Extra! Extra! Breaking news! Man survives killer low in the night! Read all about it!

You know that built-in fixed alarm on the Dexcom G4? The one the manual talks about? The one that you can’t turn off? The one that goes off at 55 mg/dL? I got to hear it last night.

Many times.

It goes Bzzt! Bzzt! Bzzt! Rapid. Staccato. Three times in a row. Bam-Bam-Bam. Un-comfortingly like machine gun fire.

I know this because last night, well… technically this morning, I had my worst hypo ever. Not the lowest; but the longest. I spent an increasingly terrifying total of 1 hour and 25 minutes in the hypo range—below 75—and a whopping 40 minutes sub-50. And nothing I did, nothing, would reverse the trend. It was like being glued to the train tracks with industrial-strength epoxy while watching the express barreling towards you.

My Dex4 fast-acting glucose was like water. My glucose tablets were no more than celery sticks. And shortly before the ice broke, my addled brain entertained a horrifying thought: Maybe my new pump is malfunctioning. Maybe, even though I suspended it almost an hour and a half ago—maybe—even though every indication on its control panel is that it’s dormant—maybe—it’s still throwing fuel on the fire. Maybe it’s pumping away like mad, feeding the never-ending low.

Here’s how it all went down:

12:13 a.m.—A low threshold alarm on my Dex G4, set at the factory default of 80mg/dL, goes off. I groan, swear, and mutter under my breath. After cancelling the alarm, I feel for Mr. Pump’s infusion set tubing in the dark, and finding it, reel the pump in. It’s hiding somewhere in the covers. I wake up the pump and enter a Temp Rate of Zero for 15 minutes, and drink about half the bottle of Lemon Lime Liquid Blast glucose fluid from the just-for-in-case bottle that lives on my night stand.

I use Temp Rates to suspend the pump when I’m low, so I won’t have to worry about un-suspending later, or being pestered by the “Hey, did you know I’m turned off???” alarms that Mr. Pump gives me if I use the Suspend feature instead.

This is my default approach to nocturnal lows. I’m not overly concerned. There was no drop-rate alarm, so this is a slow-moving emergency. Dinner was hours ago and I didn’t need to take a correction at bedtime. There’s nothing but basal on board. Perhaps I’ll need to tweak it in a day or two. Or not, I was a bit more physically active yesterday, I could be paying the price for it now.

12:26 a.m.—Two minutes before my temp rate expires, and 13 minutes after drinking the glucose, my blood sugar has dropped to 67. Not good. I cancel the Temp Rate and enter a longer one: an hour and a half. I drink the rest of the glucose liquid.

12:43 a.m.—The fixed alarm goes off. I’m now at a sensor glucose of 55 mg/dL. Things are very quickly spiraling out of control. Dropping that much? That quickly? After drinking glucose fluid? Could the CGM be freaking out? A fingerstick confirms the damn sensor is right on the money. Dexcom weren’t lying when they said the new G4 sensors have stellar performance in the low range. I start munching glucose tabs.

12:48 a.m.—Sensor glucose dips into the 40s. This is crazy. I haven’t seen a real 40 since… since… since I don’t know when. My CGMs have never let me get this low.

01:03 a.m.—Sensor glucose bottoms out at 44 mg/dL.

01:08 a.m.—Sensor glucose is still at 44 mg/dL. A fingerstick confirms this is the real deal. Seeing the face of my Dexcom receiver glowing blood-red in the dark of the night is un-nerving. A long row of bright red dots march across the screen. Bzzt! Bzzt! Bzzt! My G4 receiver looks like the bullet-riddled body of a Mob hit.

01:13 a.m.—Sensor glucose is still at 44 mg/dL.

01:18 a.m.—Sensor glucose rises to 49 mg/dL. Relief sets in.

01:23 a.m.—Sensor glucose drops again to 48 mg/dL. Panic sets in.

But then, as the “maybes” about the pump fill my brain, and just as I was fixing to rip the infusion set from my body and toss the fucking pump out the window, the ice broke. My blood sugar rose from 48 to 56. Then five minutes later from 56 to 67. Then to 80. Then to 91.

It was over. I set a final Temp Rate for another hour and a half and succumbed to restless sleep, full of fitful dreams dominated by machine gun fire, equipment failure, crashing planes, runaway trains, glowing pools of deep red blood, and big-busted Angels of Death in black lacy lingerie (always male to the last).

This morning I woke unsure who to call: Tandem? The FDA? Bernard? (Seriously, he’s the closest thing we have to the Ghost Busters when it comes to D-Tech.)

But, in the pale morning light of a new day, like a NTSB crash investigator, the fact that the airliner went down is incidental to me. I just want to know why the fucker crashed. Because this was no ordinary crash. It acted like a serious insulin overdose. I needed to know if I had just suffered a genuine adverse pump event.

After all, t:Slim is still new to the market. What if it had some sort of glitch? What if some other type 1 out there had the same thing happen? What if that person didn’t have CGM? A low that long, that deep, that persistent—even with a boatload of sugar thrown at it… What would have happened to a sleeping beauty with no alerts, no chance to throw glucose tablets into the gaping maw of the low? I have no doubt whatsoever that the answer would have been: Seizure. Coma. Angel of Death. No lacy lingerie included: Just paramedics and tears by dawn’s early light. Dead in Bed.

For this crash investigation, we have the plane’s three black boxes. Black box number one is the Dexcom, G4. The hero of today’s story. Sadly, the device itself has no alarm history. More sadly, the Dexcom studio software, for all its lights bells, and whistles, doesn’t have an alarm history either. But with the software, a pen, some paper, a calculator, and with one hell of a lot of work, we can learn quite a bit.

Black box number two, the possible villain in our story, is the Tandem t:slim. Sadly, again, black box number two has no software (yet) so we can only look at the delivery logs on the device itself.

Black box number three, is my meter, which can only serve to confirm that black box number one was reporting the flight data correctly, which is was. By the way, you do know that real “black boxes” are orange, right?

Oh, plus for our investigation, we have the testimony of the sole survivor (thankfully). But this is our least reliable source of information, as my brain is probably damaged by the hour-and-25-minute-long low. Plus my brain wasn’t that great in the first place. Plus my brain has no written logs nor software that allows me to download it. A mixed blessing, surely.

In the bright light of day in my library, on my computer screen, the low didn’t look so bad as it did last night when the receiver bathed me in red light. The low coasted onto the scene. A slow steady drop from my after dinner peak of 158 mg/dL at 8:03 p.m. It doesn’t look dangerous. But, damn, once it got low, it stayed low for a loooooooooooong time despite all waking efforts to reverse it.

The pump didn’t shed much light on the crash, other than confirm, at least according to the history logs, that I didn’t do something stupid like bolus rather than suspend in the middle of the night. But it did give me the first clues as to what might have caused the crash of Flight 44, at least by ruling out some possibilities. Dinner was at 6:50 p.m. That means, as I thought in the night, the insulin from dinner was long gone by the time the shit first hit the fan at 12:13 in the morning. The dinner bolus would have run its course by 9:50 p.m., fully two hours and twenty-three minutes before the plane hit the first mountain peak on its flaming decent. And it wasn’t even an overly large bolus in the first place. 1.59 units to cover a 22 gram meal with a correction for a pre-meal BGL of 160 mg/dL. And it was a “perfect” bolus, 4 hours after the meal, the blood sugar was 120, only 10 points above target. The meal was covered, the blood sugar was “fixed.” Damn I’m good.

Or maybe not.

Because the Dex download shows a different story playing out. Starting out about 10:30 p.m. the sensor glucose starts to drift steadily downwards. Too much basal insulin is indicated. But if that’s true, I should have been having lows many nights in a row. I haven’t touched the basal rates in a week or more.

So I looked back, and sure enough, the same steady downward drop shows up on many a night over the last week. Crap! My blood sugars have just been such a mess this week they never got low enough to make an impact. I missed it. Shit!

I had seen some gentle downwards trend on the CGM traces overnight in the wee hours, so I’d been fucking with my post-witching hour basal rates. After midnight it drops to 0.8 units per hour. At three AM, even lower. But I totally missed the possibility that the problem might be coming from earlier in the evening where I’ve been running a stronger 1.0 units per hour. The trees of basal were lost in the forest of dinner and correction boli.

And this is also an example of how our tools screw us. The midnight-to-midnight software for the Dex G4 gives you a poor snap-shot of how we really live our lives. A much more useful graph would be to display my CGM traces on 6 a.m. to 6 a.m. overlay to look for trends. Let me see my 24-hour life the way I live it. Let me see my night for what it is: one night. Not two nights, the back-half on the left side of the screen; the front-half on the right side of the screen.

But still, I’m not 100% satisfied that the low was triggered by too much basal in the hours leading up to midnight. First, I’ve been running that level of basal at that time of day since I started the pump right after Christmas. If I’m running a lot more than I need, I should have had trouble before now. And I’m still befuddled by the sheer tenacity of last night’s low. I think my basal rates are pretty low for my size. The first shot of glucose should have sucked up the extra insulin lickity-split.

And no, Uncle Wil wasn’t drinking too much, either. I actually drank much less last night than I usually do (further proof that no good deed goes unpunished). I had one glass of wine, rather than my normal two, with dinner, as we had just run out. The economy and all. Plus, I’m having a hard time shedding that five pounds from the holidays, and the extra calories in the carb-free wine probably aren’t helping.

I was a little more active than usual, but not by much. Some minor household repair stuff. Not exactly a major work out.

And consider this: according to the pump log I had no insulin between 12:13 a.m. and 2:30 a.m. That’s two hours and 17 minutes with no life support. Plus I consumed a ton of glucose. Considering all of that, I should have had a hell of a rebound excursion. Where do you suppose I woke up when the alarm went off at 5:30? At only 170 mg/dL. I expected it to be much higher. Sure, it’s not exactly on target, but not the 250-300 I probably deserved, or have seen in the past.

So just to be sure Mr. Pump was telling the truth I suspended him via a Temp Rate for half an hour this morning, leaving the tip of the infusion set on top of my iPod Touch’s screen. Nary a drip nor drop nor smear of insulin was seen. It didn’t even fog the mirror-like glass surface. No insulin escaped from Mr. Pump while the Temp Rate ran.

So what was the cause of the crash? Engine failure, or pilot error? I don’t know. But I decided that I had to call Tandem. It might have just been my basal having an unexpectedly powerful effect on my body. Or maybe I got defective glucose. But… well, if something did happen with the pump, the next person it happened to might not be so lucky. I picked up the phone.

I spent about 45 minutes or an hour with their tech people, who frankly had a hard time getting their heads around the problem. I was lectured about leaving my cartridge on beyond the FDA indicated three day wear-time. Guilty as charged. But if that had bit me in the butt, I should have gone high, not low. Same with infusion set issues, although the tech support lady did ask if I put the site on a very different part of my body. I didn’t, but that was good thinking. Some areas absorb better than others.

I thought I was on to something for a minute when I realized that the “fuel gauge” on the pump showed about forty units less insulin than I thought it should given the amount pumped, plus the amount in the tubing, since the last change—but it turned out to be an illusion. An artifact of how the pump detects and reports insulin.

At long last the Tandem lady decreed she couldn’t seem to find anything wrong with the pump over the phone, told me they have no way to get any more info out of it than I can read on the pump itself, and said, “All I can suggest is you continue to monitor it.”

Ya think?

Oh, and if I have any “further incidents,” we “may” consider replacing the pump.

Huh.

I didn’t know how to respond to that. So I didn’t. The silence grew uncomfortable until she finally asked me if I was OK with that. I can’t recall if she said it flat out, or beat around the bush, but I got the impression they’d replace Mr. Pump if I made a big enough stink. But really, even I confess this is a mystery. This isn’t like the Med-T pumps, regurgitating error messages all over the place. The pump gives every sign of working correctly. I can’t really see a reason they should replace it.

It’s a blood sugar mystery more than a pump mystery. Granted, a blood sugar mystery that acts all the world like an insulin overdose, but there’s no evidence beyond one crazy stubborn low that it was.

“Are you comfortable wearing it?” she asked.

Are you diabetic? Was my reply. No. Her family is chock-full of dFolk, even including her cat. But not her. Well, there’s still time to join us, I gently teased her. I could practically hear her crossing herself. It’s hard to explain how scary this is, I told her, I’ve never had a low this bad, this stubborn before.

But in reality, I survived with no seizure. No coma. And the big-busted Angels of Death in black lacy lingerie didn’t drop in for a visit, or even a brief cup of tea. I told her that I really just called to make sure they were aware of the possible problem. Just in case. Just in case I wasn’t the only one. If this had been a pump problem, I told her, and it had happened to someone without CGM, it could have been fatal. This was serious.

“I know,” she told me. “If you had called us where you were last night, we would have called 911.”

Again, I didn’t know how to respond to that. My sugar was so low it never occurred to me to ask for help last night. After another pause she said, “Well, if it happens again, we’ll replace the pump.”

If this happens again, you couldn’t pay me enough to wear your damn pump anymore, I thought to myself. But I thanked her for her time and her kindness.

I guess I’ll never know why the hypo was so wicked, so deep, and so stubborn. I guess it was just one of those things. Still. It’s a scary reminder of what a difficult game we are players in. Diabetes is a dangerous businesses.

So now what? I reduced the evening basal rate. I took a correction for my morning high and Mr. Pump fixed it just fine. Right now, all systems seem to be go. Right now, I’m at 105 mg/dL, level and stable.

Right now, I’ve still got Mr. Pump in my pocket, steering the ship on calm seas. But of course, my wife hasn’t read this post yet, either.

Profiles: A new approach to programming a pump

Most insulin pumps are like a Monopoly game board: You program your insulin-to-carb ratio over there on Kentucky Avenue; your correction factor across town on St. Charles Place; your target blood sugar up on Marvin Gardens; and your basal rates down on the Boardwalk.

And just like Monopoly, if you screw up your programing, you land in jail.

The t:slim tears up the old board and institutes some excellent new city planning, placing all these key metrics of insulin delivery in the same place, called Personal Profiles.

What does this mean for you, should you adopt the sexy new t:slim as your next pump? It means easier, faster programing, and a new level of control not previously available with an insulin pump. Read on.

A profile works kinda like a traditional basal rate, but it’s a basal rate on steroids. You can create up to six different profiles, and each one can have up to 16 time segments—what I call steps or legs. But in addition to just telling the pump how much to adjust your background dip of insulin either up or down, at each step you can also change your other three key metrics of insulin delivery: the correction factor (called insulin sensitivity by some folks); the insulin-to-carb ratio; and the target blood sugar.

The bottom line is that instead of wandering all over the fucking game board to program your pump’s most basic settings, you can program and adjust all of them from one place.

Genius.

How’s it work in the real world? It’s tap-and-go. Suppose you wanted to add a new basal step. All ya’ gotta do is go into the profile, tap “Start Time” add the time you want it to start. A new leg is created, and it automatically copies all four values from the previous leg. This lets you adjust just the basal, if that’s all you wanted the change. The other three values stay the same.

If you need to change your IC ratio for dinner you can just duck into the profile and change that one factor at that one time and everything else stays the same. If you don’t have a time leg that works right you can add a new one in seconds, modify the one metric that’s pestering you, and leave all the others alone.

Hey, suppose you wanted to create a whole separate profile for the weekend. You can copy an entire profile with a few finger strokes and then modify it. There’s no need to enter all the data manually like some other pumps make you do.

Editing anything in an existing profile is a breeze. Tap on what you want to change and the familiar phone-pad style keyboard pops up so you can enter the new value. Of course, the Big Brother personality of Mr. Pump comes through here as well. Be sure tap DONE, then SAVE, then CONFIRM—all on separate screens—or all is lost. Literally.

Like all t:slim operations, this sounds more time consuming on paper than it really is.
The t:slim is to normal pumps what the first Apple Mac was to MS DOS computers. (Any of you old enough to remember that horrible “operating” system?) The bottom line is that the user interface of the t:slim pump makes sense. It’s intuitive. If you just use common sense and do what comes naturally, doing anything on this pump is fast and easy.

What about that new control I teased you with in the lead? On the pumps we have today we can have multiple basal rates, and we can change our IC ratios and the like by time of day; but as far as I know, none of the other pumps us have different IC ratios on different days. With the t:slim profile system you could have a different IC ratio or correction factor at the same time of day, in different profiles.

Why one earth would you want to do that?

Well, instead of talking about living for the weekend, we need to talk about living on the weekend. Most of us are either more active or less active on weekends than we are during the week. Some of us spend our weekends vegging-out in front of the TV, others climb mountains. So it’s common for pumpers to have a different basal pattern for weekends than for week days. And any pump will let us do that.

But there’s really more to it than that, isn’t there? Your activity level makes a difference to your insulin uptake. If you’re seeking the ultimate control, just changing your basal for the weekend isn’t enough. You also need to adjust your insulin sensitivity and your carb ratios. I guess you could do that on a traditional pump, but you’d have to go to Kentucky Avenue and then over to St. Charles Place every Friday night, manually change the numbers via massive scrolling; and then remember to change them back every Monday morning.

Yeah. Right.

However, with the t:slim, a weekend profile could have alternate correction factors and carb ratios built in, as well as changes in the underlying basal rate.

Genius.

Oh. Right. But I need to tell you where the genius stepped on his own dick. This near-perfect system is ruined by the fact it can’t be automated. It wouldn’t have taken a bunch of rocket scientists to have added a simple line of code to tell the pump what days of the week a given profile should be active. I hate the fact that profiles have to be manually turned on and off. I work three jobs and my activity level is very different at each job. I wish Tandem had designed the profiles so they could change automatically by day of the week.

Sure. I could do it manually. But I won’t because I’m tired. I’d likely forget to either turn one on or turn one off. Instead, I’m designing a happy-medium profile. One that balances my varying needs to best (safe) advantage. It’s too bad, though. I could have had much better control with the simplest of features, damn it.

Still, for those of you who have your shit together better than I, you can now have a whole new level of control at your fingertips—just a screen tap or two away.


Next week: No pump is accident-proof

The longest yard

OK. Technically, it isn’t a yard. It’s 43 inches. So it’s a yard-and-a-fifth. That sounds more like something you’d order at an Irish drive-thru package liquor store than something that deals with diabetes, doesn’t it?

But what I’m talking about this morning is the length of my infusion pump tubing. I prefer sets with long tubes and short 90-degree cannulas. When it comes to cannula length, if you’re lean like me, or athletic and muscular (not like me), then you should use a short cannula—or an angled set. It you are normal, fluffy, or King Size, then you should use the longer cannulas. But when it comes to tubing length, the choice has more to do with lifestyle and wardrobe than anything else.

On the plus side, long tubes let you be more creative about where you place your set and where you carry your pump. But on the negative side, all that extra tubing seems to have a magnetic attraction to passing door knobs and the like. To be blunt and crude, frankly, I like the longer tubing simply so I can leave the pump on my belt or in my pocket when I go to the bathroom. I’m tall enough that I need the long tubing to reach from my stomach to my ankles.

But t:slim might cause long tube lovers to re-think their desires. Oh dear… that sounded rather pornographic, didn’t it? Allow me to restate: the t:slim might cause fans of the 43-inch long infusion set tubing to re-evaluate their choice.

Why?

Because it’s the longest yard. The t:slim, despite its racy look, is no thoroughbred when it comes to site changes. Here, I’ll take you through the process, and it starts with a luggage tag.

Well, that’s what it looks like anyway. Actually it’s a Goldilocks-perfect tab that goes in a slot at the bottom of the t:slim cartridge. Remember that unlike every other pump ever, the t:slim has done away with the syringe. Even though other pump companies call the insulin-holding/dispensing disposable part of the pump a “reservoir,” it’s really just a syringe. T:slim has broken the mold, however. They have a jet-black rectangular cartridge that slides onto the pump and locks in the way a battery attaches to a laptop.

What’s in the cartridge, you ask?

I’m glad you asked, because the very first thing Rio and I did after the first site change was some Spanish Inquisition-style mad science on the discarded cartridge. I had read that inside the cartridge was a bag-like reservoir for the insulin, and we wanted to see it. The bag is a real reservoir, not a semantic mind game like other pump makers play. The t:slim bag holds a supply of insulin, 300 units worth, and then the machine uses a tiny micro-pump to out pull a unit or so at a time as needed. This is touted as being a great safety feature for two reasons; it’s supposed to assure bubble-free delivery; and it’s a literal, physical barrier between you and a fatal overdose of insulin.

I don’t know if it’s ever happened, but in theory, a traditional pump could freak out and deliver its entire contents to you all at once. I never lost any sleep over this fact when I wore other pumps, and I’m not sleeping any better now that I’m wearing a “safer” pump. After all, in theory, the t:slim could freak out, too, and deliver its entire contents. I’d be just as dead—it would just take a bit longer.

Anyway, getting the cartridge apart to see the bag inside turned out to be quite a bit more difficult than I expected. We were able to snap the part off, but getting into the main body took a hammer, two knives, a lot of swearing, and finally two pairs of pliers.

Yeah, we had to crack it open like a walnut.

For some reason, I expected the bag to be black, but it’s clear, and looks disconcertingly like a used condom.

But once again, I’ve gotten off track. To do a site change, you just follow the leader. The pump tells you what to do at every stage. You use the luggage tag to pop off the old cartridge, which you can then dissect later. Next, you slide and snap a new EMPTY cartridge onto the pump.

Here’s where t:slim, once again, diverges from the pack. You attach an empty to the pump. It then sucks all the air out of the bag, at which point you fill it up in situ, as they say in archeology. Which leads me to another “surprise” the t:slim had in store for me.

Most pump companies have their own proprietary systems for filling the reservoir, the best designed probably being Med-T’s elegant docking collar that holds the insulin vial on one end and the “reservoir” on the other end. But when I opened up my first pretty black and white box of Tandem reservoirs I found a bunch of garden-variety BD 26 gauge, 3/8 inch needles, and a pile of 3 ml syringes. All of them individually and separately packaged, of course.

Well, I guess there’s no point in re-inventing the wheel, especially when the wheel needs to be FDA approved, but somehow this came as a surprise to me. It struck me as somehow counterfeit, like a sleek sports car that turns out to be a fiberglass kit on a VW chassis. It’s also more packaging to throw away, and more crap to carry around in my Go-Bag.

Anyway, to fill the empty cartridge that’s waiting for you on the pump, you must first unwrap the syringe. Then unwrap the needle. Attach the needle to the syringe. Draw the plunger down to fill it with air. Inject the air into a vial of insulin. Then draw the desired amount of insulin into the syringe. The max is a whopping 300 units, almost a third of a vial.

I gotta tell you, when you draw down 300 units of insulin in a fat two inch-long syringe, it’s an intimidating amount of fluid.

At this point it’s worth mentioning another nice feature of the t:slim. If the screen times out on you, when you wake up the pump up again, it remembers where you were: It doesn’t return you to the home screen.

If there’s a minimum fill volume, I couldn’t find it in the manual that doesn’t exist in the real world—the t:slim manual exists only as array of ones-and-zeros in the digital universe.

Now, at the top of the cartridge, next to the short length of tubing that extends out of it, is a small white dot. That’s the fill port. You just stick the needle into it, and inject the contents of the BD syringe into the port. That fills the baggie inside the cartridge.

Next, you attach your infusion set tubing to the t:slim’s cartridge hub. This part is a bit bizarre. Rather than attaching the tubing to a hub on the pump itself, like everyone else does, the t:slim’s luer lock connection is downstream about two inches. I can’t say for the life of me why this is. Maybe it had something to do with keeping the pump thin, but it makes the line oddly bulbous in a bizarre location, and makes the consumer-gadget-looking pump look like a medical device again. That said, carrying Mr. Pump in my pocket, the hub is hidden. But if I start using one of the belt cases, it will become more obvious.

All of that up to this point is pretty straightforward, but next comes the loooooooooooooooong part. The t:slim is painfully slow to fill the infusion set tubing. And I mean that literally. Why, this entire post was written while I waited for the pump to fill my tubing.

The t:slim primes at a rate of 7 units per minute. A 43-inch tube holds somewhere in the neighborhood of 30 units of insulin, so the prime time (pardon the pun) is six fucking minutes.

Of course, it feels like six fucking hours.

It’s by far the slowest --filling pump I’ve ever encountered. The reason it takes so long is because of the design we discussed earlier. The pump literally has to pump a unit of insulin or so at a time out of the reservoir bag and into the “micro-delivery” chamber, and from there send it on up the line.

It’s tedious. But it’s not like you have to do it every day, either. So how often do you have to do it? Humalog is approved for use in the pump for 48 hours and Novolog for 72; but you know what? You can carry a pen of either at room temp for a month. I have a hard time believing that you couldn’t leave either insulin in the cartridge for as long as it takes to use it up.

As I was getting the blues waiting for the first drops of insulin to come out the business end of my infusion set, I found myself wishing insulin were blue, not clear. My old eyes aren’t good enough to see the clear insulin marching slowly up the transparent tubing. If insulin had color, it would be easier to see it in our tubing. Easier to see bubbles, too.

Anyway, after your latte and manicure, and checking your stocks online, your tubing is finally full and you can attach the set to your bod. It’s a standard luer lock, so you can use anybody’s infusion sets. I started off with the Animas/Unomedical Inset—which has a crafty disposable inserter device that also stores the tubing, all in a portable plastic hockey puck. The set has a smooth, low-profile arrowhead-shaped hub with a fast and easy disconnect.

I haven’t field tested it yet, but I’m pretty sure that if you disconnected for an intimate encounter, you’d be highly unlikely to scratch your partner with it. I must put that on my “to do” list.

Once the set is in place, you need to fill the cannula, and the t:slim can be programed to remember how much your sets need. You also have the option to activate a site change reminder at 1, 2, or 3 days. Not four. Not seven. Why? Probably because we are supposed to change the site every two-to-three days.

But my thinking on this has been shifting recently. After all, we wear Dexcom CGM sensors for a full week (or more). What’s the difference between a CGM site and an infusion site? Both have sticky tape on our skin, probably made by the same company, as there are only a few makers of this kind of tape in the world. Both have something that pierces the skin—either a sensor or a cannula.

At any rate, if you are insulin-sensitive enough that 300 units will last you more than three days, and if your skin is tough enough to hack longer wear, the site change reminder is useless to you.

And that’s all there is to the site change. With a final blue splash, you’re pumping insulin again.


Next week: Profiling isn’t just for the FBI