It’s amazing what you can find on the internet nowadays.

Just the other day, for example, I was musing further about healthcare and what it means for diabetics, when I came across a slideshow that perfectly exposed the elephant in the room of diabetes care and medical device development.

Let me explain: the slideshow, likely seven or eight years old, was a presentation of the great gain possible for Roche Diagnostics if it acquired the insulin pump manufacturer Disetronic. It is a very telling slideshow, and definitely worth sliding through: http://www.docstoc.com/docs/24505054/Shaping-the-future-of-diabetes-care. This is what I learned:

- At the time, Roche already had brand name recognition with its AccuCheck meters.

- But blood glucose monitoring was only 30% of the diabetes market; the future of diabetes care was even then clearly in combining blood glucose monitoring with insulin delivery.

- Roche in 2003 had no big player in the insulin pump category, but Disetronic had the second most popular pump in the world.

- And boy were there a lot of diabetics out there, and boy did they want insulin pumps: the diabetic market was far from “saturated,” and insurance companies were becoming increasingly willing to pay for pumps.

- In other words, there was lots of money to be made. And pumps were good for making money. Disetronic had a profit margin upwards of 30%, and that was just the beginning. After all, pumps have two profitable elements: the device itself, which generates a nice upfront payment, and then all the consumables! A whole host of consumables! “Glass and plastic cartridges, batteries, carrying systems, various infusion sets (catheters changed 3-4 days)”– in sum, buy Disetronic, and you’re not just buying a product line; you’re investing in your future!

Now, don’t get me wrong. Sarcasm aside, I get the Gillette business model, and I am a full-blooded capitalist, and I understand how important the profit-motive is in driving medical innovation. I have my inulin pump and my continuous glucose monitor and all their expensive, disposable parts, and I love them. I don’t fault the medical device companies in any way for charging handsomely for their products, and I greatly prefer expensive medical innovation to being stuck in 1920, where as a technology-poor diabetic my life expectancy would always be “Today?”

But I hate the flip-side of the Gillette business model when it comes to my health: if the best thing for any company to make is something that we have to keep buying, than no one will invest in finding the one-time-fix. In other words, as one Minimed employee, herself a Type 1 diabetic, sadly told me back in 2005:

“They’ll never cure diabetes; it’s too profitable to keep treating it.”

Or, as the Roche slideshow states on slide 27 of 28:

“Diabetes is not curable, but it is manageable.”

It’s the tense of that sentence that just kills me. In context, it makes sense– they mean, presumably, “Diabetes has not yet been cured, but it is not terminal, and can be managed and treated well by individuals who have the right tools.” But what the statement makes abundantly clear is: the money is in slow, perpetual fixes– catheters, test strips, sensors, disposable parts– and so that’s where the research and the focus of medical professionals will go.

Sigh. So what do we diabetics do? Fight and cry and despise the medical device companies? Heavens, no. Instead, I suggest we be as lovable and as visible as possible. We’re unlikely to convince anyone that the real pot of gold is in a one-time-fix for diabetes, because they already know the profit comes from dragging out care. So instead we have to plant ourselves in the hearts of the people working at medical device and pharmaceutical companies, so that one day, this scene can play out:

A young, dashing research assistant from a small lab approaches the head of product development of the large pharmaceutical behemoth. He says, nervously, “I know the final results from our trial are yet to come in, but I think we can all see at this point: we’ve done it. Our lab has developed a single pill that will cure Type 1 diabetes!” (Trite, I know, but a girl can dream, can’t she?)

The head of development, sitting behind her large mahogany desk brings her pen to her lips. “Really? Tell me more,” she says, but she’s just buying time. She’s not listening as the researcher continues; instead, she’s calculating: one pill per Type 1 diabetic, even at a very high price, would pale in comparison to one pump every five years per diabetic, plus an infusion set every three days, plus a dozen test strips a day every day for the rest of each diabetic’s life plus–

“Well?” the researcher finishes. “How quickly will your company be able to get it out to people?”

“It’s not that simple–” she says, beginning to build her defense, her explanation as to why it would never work, her dismissal of the researcher before she would proceed to bury him and every record he had of what he had discovered. “You see, there are complications to introducing a product like this to the market so suddenly, and–” she paused. She tried to begin again, but could not; all her calculations and wordy formulations slipped, and all she could think about was the clerk she had seen at the department store, stopping mid-shift to measure her blood glucose, and explaining sadly to a patron that she would have to get someone else to assist her right then. And in that recognition and humanization, the head of product development forgot for a moment the dollars and the sums, and remembered the human cost, the social burden, the daily pain of chronic illness.

She cleared her throat, and began again: “There are complications, but we’ll do it. One pill for every diabetic in America and worldwide, as fast as the FDA horses can carry them.”

And they lived happily ever after. The End.

Okay, I know it’s unlikely to happen exactly like that. But because the dollar value is so heavily in favor of eternal management, rather than curing, we diabetics are going to have to rely on something other than buying power to tip the research and development scale in our favor– and as I see it, getting every member of the medical product development process to know and love at least one diabetic is a really good start.

Incidentally, Roche successfully acquired Disetronic early in 2003. And indeed, Roche has successfully enlarged its portion of the rapidly growing diabetes care market. Their meters and pumps are great, I’m told, and I have nothing against them– I just wish we had a cure already!

All the news and talk of healthcare recently has started me thinking; I have not read the healthcare bill, and I don’t have any answers for Congress, but there is one particularity of my experience that I think is worth sharing:

I have Type 1 diabetes, and I work for a start-up.

For those of you who aren’t intimately familiar each of these categories, that may not sound too impressive. For those of you who are, I think you’ll agree with me that I should thank my lucky stars.

You see, working at a start-up, like being self-employed or working for a very small business, implies I have no benefits– no HR, no 401k, and no healthcare. That is one of the trade-offs of working for a small company; I get to take advantage of the agility, personalization, and direct contact with great people that a small organization makes possible, but as a result I must give up some of the built-in economies of scale that I might get at a larger company.

But, the trick is, being a diabetic, life without healthcare is a nightmare. Good diabetes care requires seeing at least one specialist, preferably at least once per quarter; regular blood tests to monitor A1C; a blood glucose meter; zillions of pricey little test strips, not reusable; bottles of at least one type of insulin; and either a constant supply of disposable syringes or an expensive insulin pump and its requisite arsenal of infusion sets and insulin cartridges. And that’s just for the basics.

In other words, if you’re a diabetic, have healthcare or have a bottomless piggy bank, but don’t get stuck with neither.

I am not independently wealthy, and I do not have group healthcare. If I tried to get insured as a Type 1 diabetic, I would likely get laughed out of any insurer’s office. So how is it that I work at a start-up? What is the lucky star I can thank for the fact that I am insured, well-managed, and not destitute as a Type 1 diabetic?

Ah, yes. The foresight of my parents. Something in their genes likely gave me diabetes, but something in their parental anxiety caused them to enroll all four children at Kaiser when we were young and uncontaminated. So by the time I turned nine and was diagnosed with diabetes, I was already in the system.

The System. Kaiser Permanente. A behemoth, indeed– 8.6 million members, more than $30 billion in revenues, and a seemingly infinite network of departments and employees in charge of maintaining the massive bureaucratic infrastructure so key to my daily life as a diabetic.

Many people– myself included– complain about Kaiser and the myriad indignities that come with such a large HMO, from long wait-times to antagonistic pharmacists to doctors who don’t know patients’ names. But you know what? When I turned eighteen, I was able to roll over my dependent-care plan into an individual plan. I did not have to reapply. Crucially, that meant I inherited the no-preexisting-conditions status of my childhood. And that meant I could actually get coverage, and further that I could actually pay my monthly premiums.

Reactions to the fact that I slipped through the pre-existing net are varied, defining a spectrum from “You lucky b*,” through happy relief for my sake, through indifference, and all the way to, “You’re the one who makes healthcare expensive for the rest of us.”

Yes, I am. I’m sorry. But I’m also alive.

But the real trick, and the realization that started me on this train of thought, is that my healthcare luck doesn’t stop with my still being alive; because I am insured, I am able to participate in the job market and the larger economy in ways that I absolutely could not if I had to rely on personal savings or group healthcare for my diabetes care.

In other words, I work at a start-up, and I have Type 1 diabetes. Before working here, I co-owned a corporation that did web application development. I didn’t have healthcare there either.

Median tenure for employees these days is about 4 years. More and more, especially with the decay of pensions, workers are opting not to spend their lives with a single company, and instead are switching jobs, optimizing for better pay, more interesting labor, or even just novelty. I have taken part in this sea change in the American workforce, and I am surprised if anyone tells me they expect to work for their current employer for more than five years. Certainly among my peers this shifting is expected; as legend goes, the smart engineers gain experience for a few years on a project, then move to the next job for a bump in annual salary, then rinse, wash, and repeat.

Studies and opinions differ as to whether this is good for the GDP or good for America. I don’t have any verdict on the macroeconomic value of job mobility and instability, but I do have a verdict on the microeconomic value: I like it. Job mobility for me personally has meant freedom of choice, and that has been good for both my piggy bank and my peace of mind. The one job I’ve had that offered a group plan, I hated. After a few months, I came home crying every day. Luckily, I had not stopped paying for my Kaiser insurance, and so was able to leave that job without worrying about not getting the medical care I need, but if I didn’t have individual coverage, I would have been stuck until I could find a different position that also offered a group plan.

What does this all mean for the question of healthcare before Congress right now, and for the more long-term notion of single-payer coverage? I’m not sure exactly; my story is just one grain of sand on a crowded beach. But I know that if I didn’t have individual coverage that predated my diagnosis, my life would be a lot more complicated, and a lot more limited. And for all the pros and cons before Congress, I’d just like to add that I consider myself an active and able member of the workforce, but my capacity and output rely in large part on my access to healthcare.

But, hey, they know that, right? They’ve been talking about this for a century now; hopefully they’ve heard it all. For the me, then, the conclusions are simply these:

1. I love you, Mom and Dad. Thanks for worrying a few years ahead of time.
2. I love you, Kaiser. I hate you, but I love you. Please expand your national network, just in case I ever decide I want to move out of California.

Those are the two cents that I can spare (since I haven’t yet had to spend them on diabetes supplies)– what’s your story? What do you do if you don’t have individual coverage? Or if you don’t have healthcare?

As of Saturday, March 6, at 10:40 AM, I am one step closer to having my robot pancreas.

I have, through a combination of landing the best endocrinologist in the Kaiser system and being a persistently squeaky wheel, gotten my Medtronic Minimed Continuous Glucose Monitoring System. I am phenomenally excited about this development, and not only because I get to imagine myself as a sexy anime cyborg: I love data, and my heart beats with a quick rhythm at the thought that I will soon be able to improve my diabetes care, and resultantly the quality of my daily life, with the help of more data and more data analysis. With this CGM, I hope to get a better picture of where I stand, and with that I hope to build a better system for getting me where I need to be.

So, some notes from setting up my newest biogadget:

Getting the goods

Just in case you had any doubts that medical devices were a high margin product, know that I received several calls from several different Minimed representatives, each of which went over some aspect of the delivery, pricing, billing, or training that would be scheduled. The Medtronic box arrived via 2-day UPS shipping on Friday evening, with a trainer due to call me the following week.

When I opened the box, my first thought was that perhaps they had accidentally delivered some sort of Klingon weapon. I quickly realized, though, that the oddly shaped, spring-loaded device was the assistive inserter for injecting the sensor into my abdomen. The insulin pump comes with a similar device. I hate that thing. The mere thought of a spring-loaded, large-bore needle pointed at my stomach makes my cringe.

After investigating the various components (Klingon injector, little blue thing, bigger blue thing, small white flying saucer), I pulled out the instructions. While I had no intention of waiting to receive training, I did at least intend on reading the instructions.

Step 1: Charge your new MiniLink REAL-Time Transmitter.

Takes up to eight hours to charge the first time? Really? Lame! I was to ready to get going! Luckily, the actual charging time was only 15 minutes, a far cry from the threatened eight hours. I was pleasantly surprised.

Step 2 through One Million: Read each and every one of the many brightly colored instruction booklets included in this box, plus anything Minimed has ever sent you, ever. Oh, and:

DO NOT insert a glucose sensor or use your MiniLink Transmitter until you have attended training.

Yeah, right. Moving along, I identified the pieces I needed (box of sensors, transmitter), and tried to figure out how to get the thing on me. Unfortunately, the instructions only showed how to do it with the evil spring-loaded needle-shooter. So I was on my own.

I opened one of the sensor packages. Wow. That is one big needle. I use the Minimed Silhouette infusion sets, which are pretty big themselves, but this guy was thick. And the angle was more severe than the Silhouettes, which made me think queasily about where the tip was going to land inside of me. And the sensor itself looks like a giant mosquito. Yikes.

It took me about three tries to finally get the sensor inserted. The first two tries I got the tip in, and then bailed as my fingers began to slip and I couldn’t seem to get sufficient tension to push through the elastic skin into the interstitial fluid. Once the sensor was in, though, I realized I didn’t know how to remove the needle part to leave only the sensor behind. In all the provided instructions, the injector seems to take out the needle automatically, so there was no indication of how to do it by hand. I pulled a little, but nothing happened. So there I was, half naked, beginning to panic because I had a large, sharp object hanging out of my abdomen. Breathe. It’s got to be just like the pump infusion set, right? The plastic part disconnects, and the needle can be extracted. I pulled harder, and felt the plastic inserter begin to disconnect, pulling the needle back with it. Sigh of relief.

Watching the Pot Not Boil

That was just the beginning, though. Next came the waiting. Ten minutes of letting the sensor get “wet with interstitial fluid.” (Ew. Way to word that one, Minimed.) Then FOUR HOURS before the sensor began to actually tell me anything. Four hours of startup time! Now, in retrospect, that doesn’t seem so bad, especially considering I had no continuous sensor before. But still! During that four hours, I checked the thing every ten minutes, and it wouldn’t tell me anything. Which leads me to an important note for Minimed developers, medical device designers, and anyone who designs a user interface for anything, anywhere: if the user is waiting for something, show the user a visual indicator that something is happening. A loading bar. “Waiting for data.” An hourglass. The Mac spinny beachball. Anything! Tell me something is happening! All that the pump said was “Sensor Start,” so I was unsure if that meant “It’s in the start-up phase,” “It has been started,” or “You did it wrong; start the sensor again.” I do not like waiting, unsure of whether I should restart the whole process.

The Payoff

But then. Finally. I start getting data. Blood glucose measurements! Every five minutes! If you are not a diabetic or not a geek, this may not mean much to you. To me, this is awesome. Yes, literally– awe inspiring. This will make my life so much easier.

And one weekend in, it has: I can monitor my blood sugar while taking a yoga class. I can know that I’m 77, but stable, so no need to correct. I can know I’m 122, and heading up, so better get moving. Sigh. I love medical advancement. I love healthcare.

And an additional note to those of you without continuous glucose monitoring, which is likely most of you: fight for it, it’s worth it. If you’re with Kaiser, send me an email, and I’ll tell you what the magic words are. And if you have any sort of sway with the government, or with healthcare providers, make it loud for sake of the rest of us diabetics: please help us get the tools we need, not to live normal lives per se, but to live healthy lives.

I was reading the other day about the amount of Federal Stimulus grant money still remaining. Given the large amount of money allocated in the past year for grants, it is not entirely surprising that a large amount remains up for grabs for enterprising grant applicants. The most interesting segment to me is the money still available via the National Institutes of Health, as that’s the money that goes toward disease-focused research and development:

National Institutes of Health has spent 45 percent, or $4.73 billion, of its $10.4 billion ARRA allocation. Approximately $4.35 billion has supported 12,788 grants, and $379 million has supported contracts. In FY 09, nearly 60 percent of ARRA funds supported new projects and nearly 40 percent supplemented existing projects. Over the summers of 2009 and 2010, approximately 5,000 students and science educators will gain hands-on experience in top research laboratories.

$4.73 billion. That’s a lot of money. And it starts me thinking: well, if I had a grant of say, $10 million, and I hired a team of researchers and engineers, what would I build? In other words, “If I could build my diabetes dream device, what would it be?”

This is a fun game to play, and very similar to the “If I were fabulously wealthy…” game I sometimes play. But, to make it meaningful, and not just completely fantastical, we have to have some rules: these are smallish grants, usually, so no be-all-end-all solutions; “artificial pancreas” and “a cure” don’t count, and the device/drug/whatever should be reasonably achievable within a few years and in the millions of dollars.

So what would I build? These are some of the first to mind (As far as I know, none of these exist yet; if they do, please do tell):

1. One hole, please. There are pumps, and there are continuous glucose monitors, but every implementation I have seen thus far requires two separate insertion points. The reasons for this are clear– it’s very difficult to get an accurate blood glucose reading in the same location as you are constantly injecting insulin– but surely there must be some way to unite the two? I have a pump now, and I will gladly make an extra hole in my stomach every few days for a sensor as well, but it would be nice if I didn’t have to. Wearing a bikini and finding undamaged skin on my torso with just one insertion point is hard enough.

2. Smaller! I have many times been asked if my pump is an MP3 player; I am surprised, not because I expect people to know what an insulin pump is, but rather because I have not seen an MP3 player that large in years. Have you seen iPods lately? The Shuffle is tiny! Why can’t my insulin pump be that small? Where’s my sticker-size pump, with a svelte bag of insulin that no one notices? I would gladly purchase small, obscure batteries if that meant I could wear my pump under a dress without needing my current ridiculous garter contraption (a ring of velcro I wear around my thigh, with a string attached and pinned to my underwear; the pump hands on the velcro at my inner thigh, so as not to contort the lines of the dress).

3. Smarter than a doornail. This is the one that sticks out to me, probably because I know more about software than I do about medical devices, but in any case: every piece of diabetes machinery I have should be able to talk to every other piece, and they should confer and advise or decide as to the best course of action. I should be able to scan the UPC of a food item I’m about to eat, and my insulin pump should know how many carbohydrates that is, and that given my metered blood sugar, my current heart rate, the time of day, and my history of carbohydrate-to-insulin ratios and subsequent blood glucose measurements, I should take 1.3 units of insulin.

These things are possible, and I want them. Now.

I feel like I’m thinking too inside the box here, though; the listed items would be nice, but they are variations on things already had. What do diabetics want? If you had money and a team of scientists and engineers, what would you build? Diabetics, parents of diabetics, doctors for diabetics, friends of diabetics– what’s on you Diabetic Wish List? (Shout out here to some of the recent discussions and requests I’ve seen concerning more accurate glucose monitoring.)

Scientists, engineers, and grantors, take note!

It came! My pump arrived, pretty in pink, and, yes, it was like Christmas. I transferred all my settings over, and I am now plugged in and running with the new Medtronic Minimed 522 Insulin Pump.

As expected, the biggest difference between this pump and my old 515 is the color. The user interface, shape, buttons, and operations are all almost identical. This is strange when considered from the perspective of the rapid release, continually updating technology world that so many consumer goods operate in; compare, for example, the iPhone, which allows constant outside development and additionally makes small interface adjustments through regular software updates. There are significant benefits to this approach, insofar as development of new, innovative technology is easy and fast. Just imagine what a few clever diabetics could make possible if we had a framework to build and distribute iPump Apps!

On the other hand, the inertia of the Minimed interface is completely understandable given the regulations and responsibilities familiar to medical device manufacturers. If a user can’t immediately find his doodle-drawing application after it’s renamed in the iPhone App Store, no big deal– he’ll figure it out. But if a pump wearer doesn’t recognize the “No Delivery” alarm because its melody has changed, or boluses an extra hundred units because the Bolus Wizard configuration is computed differently, people get hurt and Minimed gets sued.

In other words, in the case of medical devices or pharmaceuticals, I can tolerate what in other industries would seem like too much regulation and resistance to change. I was reminded of this quite unexpectedly when I woke up very sticky and unhappy with a blood glucose of 38 at midnight on my first night of wearing the new pump. Sitting on the floor, after enough carbohydrates and time to have recovered to a more sentient 65, my first thought was, “Why did I get so low? Could I have configured the basal rate incorrectly?”

As it turns out, I had not, and the low was likely a result of my overbolusing for dinner hours before, and subsequently choosing to assume that I would be okay with a pre-bed blood sugar of 78 (“Hmm.. lower than I’d like, but I already brushed my teeth… it’ll be fine!”). Nonetheless, the episode made me appreciate the fact that, given FDA regulations and acceptable error rates for medical devices, there was an extremely low chance that the pump was configured correctly, but actually pumping the incorrect amount of insulin into my body. Can you imagine how damaging it would be to have a pump that claimed it was injecting 0.3 units of insulin, and instead injected 3.0 units? Or, worse yet, a pump that sometimes– but not always– was slightly off in its measurements– just enough that you couldn’t be sure something was wrong, and yet your blood glucose would vary unpredictably. Please excuse the colloquialism, but that would suck.

Luckily, my pump suffers from no such shortcomings, and, based on the last few days of observation, seems to be performing capitally– which is to say, just like the old one.

Oh, and there is one other notable change between the 522 and the 515: there is an extra menu option now for “Sensor,” which I would use if I had a Minimed continuous glucose monitoring sensor. I don’t have much use for that option, since I don’t have a sensor.

But, here’s the other exciting news from this week: that sentence, rewritten with full disclosure, should read: I don’t have much use for that option, since I don’t have a sensor, yet!

But more on that later.

One of the most difficult things for me about being diabetic is the constancy of the disease. Since my diagnosis fifteen years ago, I am at every point and in every context A Diabetic, with the steady drumbeat of carb-counting and blood glucose monitoring as the soundtrack to my life.

From what I have read, this sense of a constant burden is common among those with chronic illnesses or enduring ailments; indeed, there is no rest for the weary. I think this feeling is the one that spurs many diabetics to engage in temporary periods of “diabetic rebellion,” where we say, “I am a diabetic every day, without pause, and I’m tired; today is my birthday, so blood sugars be damned, I’m having my cake and eating it, too!” These rebellions are usually short-lived, and in most cases, according to people’s accounts , there are repercussions in the form of uncontrolled blood sugar, but these pass, and the relief from mental stress and weariness is worth the price paid.

I was thinking at length about this constancy and the common rebellious reaction on Friday evening, as on that night I was so lucky as to experience one of the even shorter-term, but ever-so-much-more-rewarding forms of respite from the sense of constant vigilance over and attendance to diabetes: a single moment, an instant really, of ascendent beauty.

Let me explain: I think of my life as a vector moving through time and space. There are points along this vector that mark the prodigious events of my life– birth, first speech, marriage, and so on– but the path itself is one of continuous motion and awareness, along which I am breathing, eating, living, and, of course, diabetezing. I might zig-zag around in a day of diabetic rebellion, but even then my path is continuous, diabetic and human throughout.

But! But sometimes, like last Friday evening, there are moments. Moments of sensual awareness and beauty so poignant that in that instant, my path is broken, divided. Such instants are hard to define, and they vary with person and mood, but for me they are this: the sun filtered through tree leaves; the noise his scalp makes against my fingers when I play with his hair; the stillness in an empty room as I look out at the city; the sunset over the water passing the car window at a hundred miles an hour; and last Friday, the whine of Joshua Bell’s violin as he played a Bach sonata. In these moments, I am not a single body, moving through time and space, ever-breathing, ever-blinking, ever-monitoring; I am simply sensation, perception standing before beauty. My heart may beat, but I do not hear it.

And so it is for a brief time I am not a body, and I am not a diabetic, and I am not hungry, tired, happy, standing, sitting, anything. I am only present, a witness to beauty in the world, passing through an empty space in the vector of my life. (If you like math: in my mind’s eye, these moments are when x = -1 in the graph of (x + 1)(x + 2)/(x + 1).)

These moments are short indeed, and soon enough my body is reminding me I have to pee or eat or measure my blood sugar. Nonetheless, that instant, that sliver of respite from the constancy of human being is refreshing. And I sit back. And I say, Dear God that is beautiful. Weak words– but how else can I describe this disembodiment, this ascendence? I say ascendence here, not transcendence, with design: transcending my self or my diabetes is akin to a period of diabetic rebellion, in which I leave my body and feign for a while that I have a different body, an unbroken body. Ascendence implies to me a movement upwards, beyond any sort of body, into sense and sensation. (If you like French: this is similar to the idea of La Petit Mort– the moment of orgasm when the body is so happy it cannot think to want anything, and in this lack of want, is no longer really a living, breathing body.)

Why these moments? What about the sunlight of the music affects me so? I’m not sure; I’ve tried to analyze and taxonomize these ascendent instants, but I have not succeeded. Often light, specifically soft light reflected, plays a role, as do shiny and pretty things; but that is just me guessing. And last Friday, why music? I enjoy music, to be sure, but I am no musician and know very little about classical music. I suspect, though, that part of the trick of these moments is that they cannot be analyzed or duplicated, as they are by their very definition moments that must lack analysis and perspective, and must remain naked of thought.

What is all this to say? Well, for starters, I had a lovely Friday evening. But more importantly, we all need moments of respite, and diabetic rebellion can be dangerous. Better to watch for ascendent moments, and in that remember that the world is beautiful, life is beautiful, tiny moments good and full of glory.

A Story of Adventure and Love in the Endocrine System

Since 2005, I have been the appreciative owner of a Kaiser-subsidized Medtronic Minimed insulin pump, model 515. It has been good to me; it has accompanied me through sleet and through snow. We have flown together, tanned together, climbed together. We’ve never showered together, but we have slept together. Often.

Anthropomorphizing aside, I spend a lot of time attached to, looking at, and relying on my pump. Many people ask if I have named it; I have not, and that is likely because I view it not as a separate, thinking entity beside me so much as an externalized, detachable fraction of my body. My secondary pancreas. My hippy chip. My wooden leg.

For five years now it has served me quite well. But, alas, plastic though it is, it is mortal: two years ago, I had an issue with the pump. I was visiting my parents in LA when the “Low Battery” indicator went off. I went to change the battery, grabbing a triple-A and a quarter to open the compartment.

But the compartment wouldn’t open. After years of opening and closing, the plastic groove in the battery compartment cap was stripped, worn away to the point that I could not– with a quarter, screwdriver, or even a file– get sufficient torque to unscrew the cap.

To those of you with pumps, there is an implicit “needless to say” here– I panicked. I was away from home, the battery was low, and I could not replace it. How long did I have before the pump died? Did I have any syringes? How could I possibly know how much insulin I would need?

I called the Medtronic support line. They didn’t do partial replacements; the whole unit would have to go. Luckily, it was still under warranty. Even more luckily, they could ship it overnight. Perhaps the battery would hold out!

But! It was Saturday. Even shipped with their fastest carrier, the soonest I could get it would be Monday. Panic! Malaise! Needles and syringes!

And a glimmer of hope: “On my pump, it says your offices are in Northridge.”

“Yes, our Minimed division has offices in Northridge, California.”

“I’m about twenty minutes outside of Northridge– could I just pick it up?”

“Well– yeah, I guess so. Let me see….”

And within an hour I was the deeply satisfied owner of a brand new 515 pump, reprogrammed and plugged in. Zero down time.

Other than that, the pump has been a faithful organ to me. But I have kept my eyes open. I have not forgotten its transgression. And sure enough, recently, I’ve seen the familiar signs of decay– the slowly widening groove, the growing number of plastic scales sloughing off the cap, the increasing difficulty of each battery change.

This time I was ready. I wasn’t going to be left without a vital, if non-native, organ. I called Kaiser, navigated the deep recesses if the Durable Medical Equipment departments, and determined that my insulin pump was out of warranty, but could be replaced with the 20% copay on a well-insured and therefore drastically marked-up device. I was looking at a charge just under $1,000.

A lot, yes. I translated the amount into weeks of my hourly wage and wavered. But would I pay $1,000 to save my toe? My leg? My pancreas?

“Do it,” I told the Medtronic representative.

And so. In about three days, I will be the proud owner of a Medtronic Minimed 522 insulin pump, in all its pink plastic glory. Like the Barbie Dream House, but with a complimentary box of infusion sets.

“I’m getting a new pink pump!” I told my mother.

“Shoes?” she asked.

Oh, so much better than just shoes. This is like a whole new leg. I am so excited!

I finally got down to the lab to get my blood tests done the other week. The last one was about four or five months ago, so this HbA1c is an important measure of my progress and control over the past few months. (For those of you unfamiliar with HbA1cs, it is a test of longterm plasma glucose concentration that serves as a measurement of average blood sugar over a three to six month period. For more information, see Wikipedia or the NIH’s medical encyclopedia.)

I got the results about a week and a half ago; I’ve been delaying writing about them since then, mostly because I’ve been delaying thinking about them since then.

In other words,
“‘The time has come,’ the Walrus said,
‘To talk of many things:
Of shoes–and ships–and sealing-wax–
Of cabbages–and kings–’” (Lewis Carroll, 1872)

This is me stalling for time.

Ok– deep breath; it is better if I just dive in, so the water doesn’t feel so cold.

My HbA1c was 6.3%. For those of you unfamiliar with HbA1cs, that means that on average over the past few months, my blood glucose has been about 145 mg/dL. For those of you unfamiliar with me, that means I feel like I’ve failed.

(And there’s that moment where I hit the water and it is under and over and all around and it is cold. Instinct and panic push against the roof of my mouth, and all I can do is fight the temptation to breathe in the cold water.)

Let me explain myself: for the past few years, I’ve had HbA1cs of 5.9 and 6.0%. This translates to an average blood glucose of about 130 mg/dL, and sits just above the cusp of non-diabetic values, which range from 4.0 – 5.9%.

In other words, on average, from the outside, I was almost normal. That must be success, right?

The problem is, averages are deceptive. Truth of the matter is, for the past few years, I spent way too much time hanging around a blood glucose of 50 or 60. I woke up in the middle of the night with measurements below 45 at least once a week.

Why? Why couldn’t I see those lows coming, bolus less, eat more?

Good question. Here is me being honest (bear with me now; the cold of the water slows my limbs and severs my toes as I kick upwards): I did see it coming. I could have bolused less, and I should have. But, despite my better sense, and my years of education, and the concerned admonition of my husband, and the oh-shit warnings of my doctor, being low was less scary than being high.

Being low is less scary than being high.

It shouldn’t be. If I stop and think, or if I’m explaining diabetes to the unacquainted, I know full well that extended periods of high blood sugar are indeed damaging, but severe lows even for a short time can lead to comas, fainting, or horrid accidents. As if that’s not enough, my doctor informed me recently that new studies imply that extended incidence of hypoglycemia can cause debilitating mental degradation over time.

Yes; I know all that; I see all that. Yet all I can feel is: high blood sugar is failure. Failure to plan, failure to anticipate, and, most tellingly, failure to control. High blood sugar felt like loss of control, and so I would push ever lower to avoid the possibility of being high.

Why doesn’t low blood sugar feel equally out of control? I don’t know; I’m not a psychologist and do not understand all the emotional and psychological mechanisms at play, but I presume my feelings are similar to the kind that drive anorexia: an expectation reasonable in moderation (controlled blood glucose/controlled weight), taken to one extreme (severe hypoglycemia/starvation) in order to avoid the emotional impact of another (hyperglycemia/obesity). Initially, external indicators feel like success (“Your HbA1c looks great!”/”You look great! Have you lost weight?”), until things move too far to one end of the spectrum. And my friends and family purse their lips with worry. And it’s 2 AM and my husband says in exasperation– “You’re 33. How many times do we have to do this?”

So. I am not aiming for a blood glucose of 70 anymore. I’m aiming for 130. I suspend my basal and eat corrective carbohydrates when I’m 100 now, so I can stop myself before I reach 50. I write down the factors and variables I am considering when I bolus to make sure I am not over accounting or adding in extra units arbitrarily. I make a conscious effort to think to myself: do not overbolus; better to be 150 in thirty minutes than 50.

(And the water thins out and I can feel the light, press against the tension of the surface.)

I see the fruits of this labor; being low feels physically awful, and not being low all the time means I think more clearly and I panic less. I miss 130 at times, and end up hyperglycemic, or hypo, but less often than before.

And my HbA1c is 6.3. This is progress. This is good, I tell myself. This is not failure.

And as I continue to get more involved in the diabetic community here and see the promise of better care through thought and science, I can almost convince myself to believe that.

(And I reach air and breathe is relief, safety in the expansion of molecules. And I pause, treading water, waiting for my blood to catch in the wind and accept the cold.)

This is a true story. More or less.