Who’s navigating?
June 29, 2009, 10:01 am
It’s been a rough couple of days for the old diabetes. For reasons unbeknownst to me, my body has taken it upon itself to become ridiculously insulin resistant. For example: I just ate my usual breakfast of a low-fat greek yogurt with blueberries, which usually sends me to a max of 180, and my blood sugar is currently 249 and rising sharply. I keep taking insulin and punching my hip (where the pump is inserted) but to no avail — it’s going to keep climbing and climbing, and ain’t nothing I can do to stop it (except maybe eat carb-free frittata for lunch).
This lack of control, combined with a day’s worth of high blood sugar yesterday (and a subsequent 150 point plunge) sent me into a little round of tears. I’m a little worried that I’m heading in the same direction today — but in the meantime, I wanted to comment on the hopefulness of the name “Freestyle Navigator” for my continuous glucose monitor. Because you know two things diabetes does not make me feel? “Free” and “able to navigate anything.” Seriously. It would have been much more realistic if they had named the CGM “The Ball and Chain” or “The Controller.” Maybe “the Master”? Or the “Sorry, you’re fucked?” Or, in reference to certain days, the “Don’t Even Bother.”
But of course, I will bother — and I am bothered. Right now it’s at 252 and climbing, despite more than twice as much insulin as I normally take for breakfast. Has anyone else had bad luck with minimed’s Quick Set inserter? I used to use the Silhouette but that kept getting infected . . . and while I normally wear my pump on my stomach, I have recently, thanks to the ol’ Freestyle, run out of real estate.
Stem cells!
I’m trusting that pretty much everyone with a malfunctioning pancreas knows by now that Obama just lifted some of the restrictions on stem cell research (if not, click here for the AP story). But I figured I’d still give a little Monday morning shout-out to the news. Granted, it doesn’t lift the ban on using federal money to develop embryos (as I understand it, all the stem cell lines that the fed can now fund come from the discard pile at fertility clinics — a practice which I still can’t believe we didn’t previously allow). But it’s still absolutely fantastic news. Congratulations to all the scientists who now have access to a new pile of cash to try to cure disease — we diabetics have definitely got your back.
stem cells
Wanted: CGM stories
So, I went to the endocrinologist on Friday for my three-month check-up. Not very productive, these endocrinologist visits. I basically travel an hour each way to have my doctor tell me my A1c and then take my blood pressure. Then we spend about four minutes writing prescriptions and I head home. I’d rather just do this by phone.
The most frustrating aspect, however, was the fact that now that I’m on Blue Shield, it seems very unlikely that my Abbott Navigator continuous glucose monitor is going to continue to be covered, thanks to their desire for “prior authorization.” This pisses me off — there is absolutely no question that being able to see your blood sugar in real time helps you get better control. And when you’ve got a disease where the short-term consequence of a screw-up (from the insurance company’s perspective) is an expensive ER visit, and the long-term consequences are things like prosthetic legs (also not a bargain), I’d think you’d pay for a device that prevents both. But hey, whatever. I don’t work in a claims department.
This matter is far from resolved and all of my pessimism may turn out to be unfounded — but regardless of how my own claim goes, I know there are plenty of diabetics out there whose insurance companies refuse to cover CGMs. So I want to hear from you: if you’ve got a CGM experience to share, write about it in the comments section. I’ll use some of your stories in an editorial about continuous glucometers — I think it’s an issue too few non-diabetics know about, and that is a no-brainer once you think of the alternatives.
(Before I sound all doom-and-gloom, by the way, I should say that I am having an excellent week: I just found out that an article I wrote about privacy is going to be included in the 2009 anthology of Best American Science Writing. So happy!)
CGMs
Was blind but now I see
Great news from the continuous glucometer front: I returned home yesterday to find a replacement for my Freestyle Navigator receiver on my doorstep. I now have a sensor on my stomach (it looks like I have a small, square tumor) but who cares: my continuous monitoring is back! I feel like running around the house singing the last line of Amazing Grace (c.f. the title to this post).
In slightly less good news, I fell victim to Trader Joe’s kettle corn yesterday afternoon. I *never* buy junk food but there it was, sitting on the “impulse purchase” display near the cash registers — and as anyone who has spent time near me at the farmer’s market knows, I have a weakness for kettle corn. The same thing always happens: I think too much about it, I buy a bag, I eat too much of it, and then I feel sick. (Luckily it actually tends not to screw up my blood sugar too badly.) It also has the strange effect of making me unable to stop eating — a problem I don’t have with pretty much any other food. You will not find me binging on ice cream or cheese doodles. But the kettle corn? Once I start I cannot stop. Today I ended up putting it in the trash and covering it with egg shells — and then still reached into the bag. Not something I’m proud of, people. But sometimes even the greatest must fall. (One would hope they’d fall to something more intimidating than kettle corn, but perhaps “greatness” is relative.)
In other news, though, I have rediscovered the pomelo. Like a grapefruit, but sweeter. Also, much harder to overeat than kettle corn, AND it leaves you feeling juicy and refreshed. I highly recommend it.
CGMs
Diabetic Distraction
Because sometimes you need a distraction from diabetes. (Please note, I actually hate cats — but I make an exception for this video. Am I allowed to do this with my own children?)
United Healthcare — you tease!
I spent three hours on the phone yesterday trying to deal with various aspects of my new insurance plan, one of which was calling up my continuous glucose monitor sensor provider to try to figure out an explanation of benefits and discovering that, guess what? After saying it didn’t need any prior authorization for my continuous glucose monitor, United Healthcare got the $5,500 bill, freaked out, and changed its mind. So now I am potentially on the hook for the entire cost of the system I’ve already been using for a month. Granted, I have faith that Apria is going to take care of this — after all, they have documentation of conversations in which United told them no authorization was required. But still — diabetes is anxiety-provoking enough without having to deal with insurance companies. Also, it seems a little weird to me that United would re-neg on its no authorization promises. After all, they knew what they were getting into when they said yes. It’s sort of like accepting someone’s invitation to the prom — someone you’ve had homeroom with for four years — and then standing them up at the last minute. I’m standing here in my dress, boutonniere at the ready, wondering what the hell happened to my date.
CGMs, insurance, United Health
Murphy’s Law of Diabetes
I just got back from a weekend in Yosemite, notable not just for its vistas, sheer granite walls and abundant wildlife, but for the fact that my continuous glucometer totally broke. Yup, the receiver for my Navigator — mentioned in my previous post as the “love of my life” — started bleeding through its LCD screen and is now completely unreadable. This was a particularly bad turn of events because, as anyone who has a Navigator knows, it serves as a glucometer as well — so I found myself stuck in the middle of Yosemite national park with no way to test my blood sugar.
This is a horrible turn of events: unlike glucometers, which test strip manufacturers seem to give away like candy at the dentist’s office, the Navigator receiver is expensive. I have no idea if Abbott is going to be willing to replace it, especially since my insurance has changed since I originally got it. This caused much anxiety today and not a few tears.
More on that later, but it also taps into what I think is the Murphy’s law of diabetic equipment — namely, that pumps, glucometers, and all the things necessary for a well-balanced diabetic life will function perfectly well when you are in within driving distance of a 24-hour CVS (or Fed-Ex delivery spot). Step outside those boundaries, though, and they will fail. In my mere eight years of diabetes, here is my list of travel-related diabetic catastrophes:
-I am in China, hiking to the top of a mist-shrouded mountain called Tai Shan. This involves walking up approximately 1,000 steep stone steps to a foggy shrine, staying the night, and hiking down the following afternoon. I get approximately 884 steps up the mountain and my glucometer breaks. The only food available is large bowls of noodle soup.
-I am in a remote area of Maine over Labor Day weekend. I arrive at my friend’s house, begin preparing for dinner, and my pump’s screen gets stuck and I am unable to deliver any boluses.
-I am on a yoga retreat in Mexico, at a hotel four hours from Cancun. As I am walking to dinner, my pump goes blank.
-I am in Costa Rica with my family. After dinner one evening, I go to prime my pump and it begins to spurt insulin, in a gentle arc — sort of like a fountain, albeit one that could kill you. I have to have a home delivery of syringes from a nearby medical clinic.
This is not counting, of course, the times where the failures have been my fault — like when I took my pump into an MRI. (Spoiler alert: the magnet will make it levitate!)
But nonetheless, I think it’s a little odd that these problems always occur in places devoid of pharmacies or mailboxes. It’s like the equipment can sense when no one’s watching. Anyway, luckily for me last night, I had a spare glucometer on hand and an old bottle of test strips, so we didn’t have to go to the emergency room. But I still have no idea how the screen got screwed up, and very worried about my prospects for a replacement. And in the meantime, I’m realizing just how important the continuous glucometer had become to me. I’d only been wearing it for four weeks, and yet now that I don’t have it, I feel like I can’t eat.
Blue Shield and CGMs
So, thanks to United Healthcare’s policy toward continuous glucose monitors, I have been enjoying Abbott’s Freestyle Navigator for about a month now. The sensor is large, and there’s a part of the battery that keeps wearing into my skin, leaving red indentations reminiscent of cigarette burns — but these are but small prices to pay for the experience of being able to see my glucose levels at all times. I must check the thing upwards of 100 times a day — scrolling through my line graphs, adding events like insulin, meals and exercise, looking at my 3-, 7-, 14-, 21- and 28-day averages, carrying it with me while I go running, using it to tell when I need a Gatorade boost during spin class, examining my overnight trends . . . I love it. Yes, dear readers, I’m not ashamed to admit it: I am in love with my CGM.
But bad news has just struck our nascent romance: starting February 1st, my insurance switched from United Health Care to Blue Shield of California. And according to my supplier, Blue Shield does not want to cover my CGM. Or, rather, it refuses to cover it without those two words dreaded by anyone attempting to get insurance coverage: prior authorization.
What I love about this “prior authorization” thing is that the insurance companies are talking about themselves. *They* have to provide “prior authorization” I would think that by stating that they “cover” CGMs, they are giving prior approval — but no. They want to make sure this is worth their money. So I’m supposed to send them 2 months’ worth of glucose records. Why? To prove that I have a “medical necessity” for a CGM.
I want to be like, hey, assholes, I’m DIABETIC. *That’s* my medical necessity. But somehow I don’t think that’s going to go over well. So instead I have to wait a couple of weeks till Abbott releases software that lets you download your glucose numbers (the thing sends a signal every minute — I’m not transcribing that shit by hand). And then I have to look through about three other glucometers to try to put together the rest of my numbers. And for what? So some bureaucrat in Blue Shield can sort through them and decide that I don’t deserve a CGM? At this point, anyone who doesn’t think seeing your glucose levels in near-real time is an improvement over finger-sticks should require prior authorization — for being an idiot.
Blue Shield, CGM, prior authorization, United
If there were hell for diabetics
. . . I know where it would be. On Monday night my husband and I, depressed about a movie we’d just seen, decided to grab dinner before heading home. The only place open was Fenton’s Ice Cream parlor, an Oakland institution that is known for serving up ice cream sundaes the size of children’s heads.
I’d been to Fenton’s before, but only for takeout. This time we were actually at a table. As we waited for our grilled cheese I started glancing around the restaurant and suddenly realized that I was in diabetic hell. The place was packed, and everywhere you looked were people happily indulging in whipped cream-covered ice cream concoctions that would foil the attempts of even the world’s best carb counter. Waiters traversed the room with gigantic banana splits; the slurping of milkshakes filled the air. I caught myself staring at a table of 8 people, spoons in hand, sugar-crazed smiles on their faces, and looked away only to have my eyes alight upon a 7-foot-tall blown up black-and-white photograph of a small boy staring wide-eyed at an enormous ice cream sundae. It was like we’d somehow stumbled into a Dionysian orgy of hot fudge and maraschino cherries. And the worst part? They all looked like they were having so much fun.
I couldn’t help it: I was surrounded by an ice cream feeding frenzy and I needed to try some. So we split a “small” mint chocolate cookie sundae. I held my pump in one hand, my spoon in the other, and stared up longingly at the small boy and his ice cream sundae, eager for the moment when his joy would become mine.
And then, as I took my first long-awaited bite, waiting for a carbohydrate-fueled euphoria to course through my veins, I realized something: Fenton’s sundaes are actually not that good. Yes, they’re enormous. Yes, the waiters are fast and loose with the whipped cream. But the ice cream is too sweet; the fudge not quite rich enough; the cloud of whipped cream tastes like it came from a can. I still ate too much — and suffered some blood sugar consequences — but I have seen the truth. At Fenton’s at least, the fantasy of its ice cream is just not worth the insulin.
Happy Anniversary!
Okay, so that’s a shout-out to me: today marks 8 years since I was diagnosed with Type 1 diabetes. I can remember it (sort of) clearly: puking, stumbling to the campus health center and writing down a list of seemingly unrelated symptoms that any first-year medical student would immediately recognize as signs of the ol’ DM. (”Wait, so you say you’re peeing all the time, losing weight despite eating large quantities of chocolate, can’t really see straight and are so thirsty you’d consider drinking out of the toilet? I think I might have an idea of what’s wrong. . . .”) A day later, I got called back to the health center. My friend Ellie held my hand as a doctor announced that my blood sugar was over 400 and that I had type 1 diabetes.
It was, to say the least, shocking. But perhaps even more shocking is the fact that since then, I’ve lived 2,920 days as a diabetic. 2,920 days of constant blood testing and insulin injections, of evaluating everything I eat by what effect I think it might have on my blood. It makes me want to post a mini-essay I wrote a while ago about what it’s like to live as a type 1. Reading it over I realized it’s a little depressing, but I also think it’s very true — and it might be a source of comfort to other people who have been living 8 years — or 15, or 50 — with this disease, managing it every day without a break, feeling your emotions fluctuate with the numbers on your glucometer. It’s my anniversary gift to you: an acknowledgment that as we live each day with diabetes, we’re not alone.
Thought for Food
When I look at food, I don’t see food. I see carbohydrates—or, rather, a vague, fuzzy picture of carbohydrates, obscured by proteins and fats and serving sizes and times of day.
I didn’t use to do this. Before February 17th, 2001, I saw food as food, and ate it as such, simply, casually, with no real thought attached. The winter of my senior year of college, after a bad cold and a painful breakup, I began eating more of it—not to cope, but to feel full, not emotionally, but physically. I was hungry, always hungry. Hungry and thirsty and tired, piling my tray in the dining hall high with massive salads, pasta, cheese, dessert, getting up in the middle of the night to slurp water from my dorm’s bathroom faucet and, when I woke, forgetting what I had done the night before. I gorged myself and yet my pants were looser, my arms thinner, my stomach flatter. Chocolate, pretzels, half loaves of bread. One afternoon I threw it all up, stumbling to my bathroom to crouch over the toilet, convinced I had food poisoning even though the vomit itself was still sweet from the cookies I had eaten that afternoon. In bed, I stared at the ceiling and waited for my nausea to pass, and yet even when my stomach had settled, my mind was cloudy. The world swirled. I couldn’t stand without stumbling. On February 17th, I entered the hospital and, since that day, food has never been the same.
To live with Type 1 diabetes means to be aware, constantly aware, that putting food into your mouth means putting sugar into your blood—your body negotiates with every bite that you ingest, disarming it, absorbing it to keep you alive and, by controlling the glucose, to which it is almost all reduced, stave off your death. There is no tissue that diabetes does not affect. Brain, eyes, toes, heart, they all have blood; everything that has blood has sugar. I could live in denial—many people do—eat what I want, take a few insulin injections, not test my blood sugar, and ride on a hyperglycemic plateau whose immediate effects would be nearly impossible to feel. But to do so would be to ignore the destruction going on inside, the glucose flooding the capillaries in my eyes, the tiny vessels in my kidneys overwhelmed by sweetness, the nerves in my feet losing their ability to feel. Instead I calculate constantly, measuring my food’s potential effect on my blood against my desire to eat it, trying to walk a Goldilocks tight rope where my sugar is not too high, but also not too low, and loathing myself when my willpower fails. Does a banana justify the effort it requires? Will that extra bite of pasta outweigh the annoyance of an injection? Is a cookie worth a spasm of self-hate?
From the outside, diabetes itself is invisible. Look closer, though, and my fingertips are calloused where I prick them, ten, twelve times daily, to test my blood sugar. A bulge in my pocket reveals my insulin pump, a machine connected to me by a tube that, in giving me insulin, keeps me alive; scars from its insertion sites pepper my hips. My pump means freedom from injections but it is a literal tether, its plastic stint in my side a constant reminder, as I sleep with it, exercise with it, and go on dates with it tucked into my bra, that I am not normal. Diabetes’ subtlety is both a blessing and a curse, saving me from stares and pity but, in remaining hidden inside, making part of me hide as well.
It has been eight years. I hate myself daily, frustrated that I do not have constant self-control, and that, even when I do, my body does not react in the way that I expect. Yogurt might be yogurt, but if I am sick, it is yogurt times 1.5, or 1.7, or 2.3. If I exercise before or after eating, it is different. If I have my period, it is different. If I am tired, or stressed, or if I eat it later in the day, it is different. Every time I prick my finger to test my blood I am judging myself; my self-image fluctuates with the numbers on my glucometer’s screen. I hate it, diabetes, wish I could take a vacation from it, eat a slice of bread without calculating carbohydrates or bite into an apple without guilt. Living with diabetes is an exercise in measurements and judgments and self-control, and somehow, in some ways—and I’m not there yet—learning to let go.
I remember sitting in the dining hall after my diagnosis watching a friend eat breakfast, his tray weighed down with bowls of cereal and pancakes smothered in syrup, two tall plastic glasses of orange juice, and I remember thinking to myself that he was not thinking, that he was just eating. Everything on my tray now required thought. Even “healthy” foods were dangerous—bran flakes a minefield, pineapple taboo, their effects nearly instantly quantifiable, my body immediately affected. I watched as he gulped a bite of pancakes, chased it with orange juice, and realized for the first time that when it came to food, I would never not think again.
anniversary
