Birthday Thoughts On A Sweet Life

Yesterday was my birthday.  It was a lot of fun, celebrated with animation, drinks and an enormous brownie dessert. When you have a birthday, it gets you thinking about life, and how we divide it into units. It makes you take stock of the units in your life; the measurements and the achievements. This comes naturally to a diabetic, as diabetes is measured in units, levels, numbers.

So, how did my diabetes measure up this year?

For one thing, I've had 12 birthday-units without diabetes, and now, 16 with. So, 4/7ths of my life is now in the diabetes era. Way more than half at this point.

I definitely haven't had enough D-meetups this year. Last year was definitely better. That doesn't mean that I haven't been corresponding with my D-friends through #dsma and #candoc respectively. I even won #bgbingo once, though I'm still waiting on my prize due to the ravages of Canada Post. Chatting is much more of a prize, however. I received two lovely postcards for World Diabetes Day, spread a whole bunch of awareness, and sent out a postcard in return (I am so sorry to the person who I didn't realize was assigned to me until it was way too late, and I still intend to send you a postcard).

The numbers on the scale are definitely better this year, though I've a ways to go. My pump units have been adjusted several times.  I've had to trade in Pumpy 1 for Pumpy 2, still far within warranty (and with three years before I can think about shopping around for something new, but I'm pretty happy.

My readings still act fairly strange whenever I perform; especially now that I've started to open for bona fide rockstars!  I'll take some wonkiness for the chance to be on stage, though. They're still a bit weird when I teach, too, but it's worth it for the chance to be a professor, and to write a whole new course at the BA level, to be taught to who knows how many years of students to come.

My blog has been read a couple thousand times, which surprises me. I should post more, however. I definitely need to finish Law and Order: Special Pumper's Unit, at least for its one devoted fan.

My diabetes never prevented me from being lucky in love, and since my last birthday, I've gained a fiance, although the engagement was really just a change in title for a long and stable relationship.  If the stability of my relationship was a CGM graph, I'd have an eight-year no-hitter, and we all know how precious that is.

Lows: On our roadtrip this weekend, I went low in two countries, one province, and four states over the course of one day. I think that is my new record, though not a pleasant one. Can anyone beat it?

Finally, one last discussion of units: this year I achieved my lowest A1c reading ever. EVER. In sixteen years. A reading of 7.2 may not be the best A1c anyone's ever had, but it represents a major achievement in my grown-up life with D. And, it amuses me to say that I got to be 7.2 at 27. Let's just hope that trend doesn't mean I'm 8.2 this year!

I'd like to thank everyone, online and off, for supporting me all through this year. It hasn't been perfect, but where's the fun in that? Just like there's no such thing as a perfect diabetic, there's no such thing as a perfect year; just an interesting one, a fun one, a sweet one, a loving one.

Thank you to my 27th unit of life for being all of the above. Now, let's bring on #28.

-Ilana

Law and Order: Special Pumper's Unit

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With all the furor over insulin pump security earlier this year (that is, the possibility of rogue outside wireless control of one’s pump), all I could think of was that it would make an excellent Law and Order episode. Intrigue! Medical drama! The perfect crime! Unless the cops could crack the case at the last minute, that is…

I had started my spoof episode and completely forgotten about it. I found it last night, and am determined to share it with the world for National Diabetes Awareness Month. It will be serialized. It will be silly. It will be very strange.

It will be…Law and Order: Special Pumpers Unit.

 If anyone is indeed concerned with the possibility of remote bolus control, or think I’m making light of the possibility of serious injury or death from an insulin overdose, I do not mean any offense. Laughter, for me, is the best and sometimes only defense.

V/O: In the pancreatic justice system, the people are represented by two separate yet equally important substances: insulin, that lowers blood glucose, and glucagon, which raises it again. These are their stories.

Well, more specifically, the guys who fight crime related to those substances, really.

I mean, you can’t really just have a show about insulin.

It’s not a very good actor.

It just sort of…puddles and dries up.

Are we…are we still rolling? Can we just cut to Doink Doink already? Come on, I -

CUT TO TITLE CARD: Law and Order: Special Pumpers Unit

Sound cue: DOINK DOINK (echoed by the Beep Beep of a pump, or possibly the whir of insulin delivery)

(Lights up on a corner of Central Park; two young women, stylish, early 20s, about to eat lunch. CONNIE is testing her blood glucose level.)

DENISE: Hey, how’s your salad? I hear the place that took over the bodega actually has some decent produce.

CONNIE: Tell you in a second – gotta test.

DENISE: Does salad even have carbs?

CONNIE: Denise, life is unfair. Everything has carbs. Hold on. (Puts in strip, pokes her finger). Bleh. (Tests) Eh, it’s ok.

DENISE: Are you changing that pokey thing every time?

CONNIE: Dude, witness my lack of health insurance. Lance and me are going to celebrate our six month anniversary, and I'm sure he's going to take me somewhere nice if I give him a year.

DENISE: You named your lancet Lance.

CONNIE: You know me. This comes as a surprise how?

DENISE: Yeah, all right.

CONNIE: I don’t even test as often as I should – despite the nagging- and you know it. Pokey things don’t grow on trees. Well, they do, they’re called thorns, but lancets cost money. Besides, lots of black dots on your fingers aren't in style this year, according to Vogue.

DENISE: Doesn’t it hurt more if it gets blunt?

CONNIE: No pain, no gain?

DENISE: I don’t think that-

CONNIE: Look, maybe I just like blunt trauma, okay? Now shut your pie hole and eat your sandwich.

DENISE: That’s hard to do with your mouth shut. Wouldn’t it technically be a sandwich hole in this instance?

CONNIE: Not if we go get pie.

DENISE: This is true.

CONNIE: Time for insulin roulette. High and the house pays 2:1. Low and its 3:1.

(CONNIE boluses from her meter)

DENISE: So that thing just transmits insulin?

CONNIE: It tells my pump how much to give.

DENISE: Where’s your pump?

CONNIE: Only my doctor knows for sure. (Pause) It’s in my pocket. (Pulls out pump) Here.

DENISE: Shiny as always.

CONNIE: Pumpy got style.

DENISE: Ah yes, Pumpy. And this is why your debut novel won’t be hitting the shelves any time soon.

CONNIE: Shut your sandwich hole.

DENISE: Actually, The Adventures of Pumpy and Lance might be a big seller in certain circles.

CONNIE: Pumpy would never run off with Lance. (Gestures to her site) He's pretty attached.

DENISE: I need someone attached to me at the hip like that. At least Pumpy is more reliable than James.

CONNIE: James might as well have been a small computer. Emphasis on pocket-sized. Hey, he finally stopped calling me.

DENISE: Thank god. That calls for a celebration. Pie tonight?

CONNIE: Pie is a go. I’m just going to take a nap at home after this. I love us being self-employed.

DENISE: You’re going to nap again? You know we need the designs by…we’re kind of really behind.

CONNIE: Yeah, whatevs. I’m on it. Oh, yeah, and if anyone asks me if I can eat the pie…

DENISE: Yeah, I know the drill. Punch to the face.

CONNIE: This is why you’re my besty!

DENISE: Cool. Just let me set up a reminder text. Two pies, apartment, 6pm.

(Zoom in on pump. Shady figure in the background pushes buttons on a device. We see “basal rate” selected.  The number of units start rising, and rising. Pump reads, “are you sure?” “Ok” is selected).

SMASH CUT TO:

DOINK DOINK

Major activity going on at the station. JOE filling out paperwork at his desk. Pictures of him with adorable children. Poster above his desk reads, “My Other Pump is a Lexus”

JOE: NYPD, Special Pumpers Unit. Joe speaking. What’s up. (Pause) DAMMIT!

CUT TO:

JOE doing the walk and talk with FRANK.

FRANK: So she OD’d? Or miscalculated?

JOE: If she did, it was a pretty severe miscalculation. She went so low that she never woke up. She’s in the hospital, and in no shape to tell anyone anything. Her friend Denise found her after she didn’t show up for pie.

FRANK: So she even missed out on pie. Damn. Was she depressed at all?

JOE: I don’t know, Frank, did she have an incurable, expensive, unpredictable chronic disease that she had to think about all the time?

FRANK: I really have to stop asking that question.

JOE: Yeah, you freakin’ yutz. We know she wasn’t insured, so testing could have been an issue, she could have relied on guesswork.

FRANK: But she tested at lunch.

JOE: Things change quickly, Frank. Anyway, according to what this Denise gal told the police, she had just dumped her loser boyfriend and they had both left their jobs to start a business together.

FRANK: Loser-free, not working for The Man, and the promise of pie. Something here just doesn’t add up to an overdose.

JOE: I agree. Let’s check this out.

(Cut to THE SUSPICIOUSLY LARGE NEW YORK APARTMENT, I MEAN WHO CAN AFFORD THAT, REALLY)

JOE: Hi, this is Joe Langerhans, special pumpers unit. Frank Banting, my associate. We came as soon as we heard.

DENISE: It’s good of you to come. Would you like some pie? When I came home with them I tried to wake her up and…there’s plenty left over.

JOE: That depends. (Makes a note in his jotter.) What kind of pie?

FRANK: Joe, don’t look a gift pie in the mouth. The mouth…of the pie.

JOE: Pies don’t have mouths, Frank.

FRANK: Pies are mysterious creatures, Joe.

DENISE: Pumpkin or strawberry-rhubarb?

FRANK: Ooh, pumpkin, please.

JOE: Strawberry-rhubarb. A pie after my own heart. I like my pies with that subtle tang of sourness and regret.

DENISE: Yes, it’s a real “a la recherche du pie perdu.” (Blank looks from the men) Never mind. (Leaves; men are silent for a minute)

FRANK: Oh! Proust! That was a Proust reference, Joe.

JOE: I know damn well it was a Proust reference. Proust is nothing to joke about.

DENISE: (Enters with pie) Pie.

FRANK: Madam, this Simple Simon thanks you.

JOE: That’s a fairly self-aware description, Frank. (To Denise) Thank you. (Takes out what looks like a speeding radar; flashes it over the pie. Instead of flashing “Your Speed:” radar flashes: “Your Carbs: 42” JOE nods and boluses, starts eating pie.) Now, we should get down to business.

DENISE: Wait, what was that thing?

JOE: Secret…D-Police stuff.

DENISE: But it just scanned and-

JOE: It’s experimental. In fact, it’s not even real. We don’t have the technology, how could we? (DENISE stares at him) Okay, I’m trying to work out a cheap prototype before Pharma copyrights and charges out the nose for it, all right? Whatever. How long have you known Connie?

DENISE: All our lives, almost. I remember when she was diagnosed when she was ten. I was sure I was going to get it too because we hung out so much, shared sodas, everything. I was scared, but then when nothing happened I was almost disappointed. First, she was getting so much attention, and second, to ten-year-old me, I thought that meant I wasn’t her real best friend. When another kid in our class was diagnosed two years later, I secretly thought Connie was cheating on me and she’d only want to hang out with her from then on. Luckily that girl turned out to be a dia-bitch-chick.

JOE: So are you jealous of the attention Connie receives on a regular basis?

DENISE: Yes, if I were still a pre-teen, I sure would be. Me, I’m just thankful I don’t have to deal with any of that crap. The misconceptions alone…

FRANK: Was Connie a responsible diabetic growing up? Did she experience any highs or, more importantly, lows?

DENISE: Well-

JOE: You’ll have to pardon my partner, Denise. I don’t even know why we let pancreanorms on the team. Frank, for the last time, asking if a diabetic experienced highs and lows growing up is like me asking you if you have ever felt hungry, even though you ate earlier in the day. It’s like asking an asthma patient if he’s ever felt shortness of breath even though he has an inhaler. It’s just a thing that happens.

FRANK: I still think it might be important to try to establish a pattern.

(Jump cut to THE LAB, where JEFF is enhancing a logbook on a screen; we see an absolutely random chart generated)

JEFF: Aw, screw it, these numbers never make logical sense anyway. I don’t even know why we do this. I mean, what the hell happened here?

LAB TECH: Let it go, Jeff.

JEFF: I will not! Okay, people, let’s run the numbers backwards and square everything. Maybe that will work. (We see the chart on the screen shift and the dots begin to form the letters “Paul Is Dead” as we cut back to Denise’s apartment.)

DENISE: Well, honestly, she did struggle with the numbers through college. But really, who doesn’t make a total mess of themselves at some point? Her parents told her that a boyfriend or random hookups were fine, as long as they checked her glucose level at 3:30am. It was certainly a way to separate boyfriend material from the immature from that one really creepy fetishist. But anyway, she’s doing much better in recent years. She loves her pump.

FRANK: Ah, yes, Pumpy. It seems Pumpy did not entirely love her back.

DENISE: Pumpy kept her alive for years! Show some respect.

FRANK: …Sorry, lady.

DENISE: It’s…it’s okay. I just don’t like anyone talking shit about Pumpy. I don’t think it was his fault. There’s a reason you’re here, right? You suspect someone who isn’t portable.

JOE: We do.

DENISE: So?

JOE: So you and Connie have a business together?

DENISE: Such as it is. Yes…yes, we do.

JOE: How’d it come about?

DENISE: It was all Connie’s idea. She convinced me to quit our jobs as paralegals – decent salary, actual benefits- and go into a design-focused business. Housewares, mostly, but we do a line of cute pump-compatible dresses. You’d think someone would have thought of that before.

JOE: What did each of you do?

DENISE: She was the creative, I drew up the business plan and work sales. We outsource construction.

JOE: How’s the business going?

DENISE: She was designing our major cupcakes and unicorns line. It was going to be awesome, but it was taking some time and we’d lost a few orders. We were struggling a bit, and maybe that got her depressed. I mean, she was eating salad for lunch. That’s not the food of someone who’s feeling robust.

FRANK: Is there anything else we should know about?

DENISE: James, for sure.

FRANK: James?

DENISE: That loser, James. Connie’s ex. He was gross and abusive and always made diabetes jokes. He kept telling her she brought it on herself, and she’d cry. He told her she wasn’t dieting hard enough. She finally wised up and dumped his ass. He wouldn’t stop calling her for weeks. Inadequate little rat man. Really good with computers though. He was designing our website, and it looked amazing.

JOE: What’s the address?

DENISE: Oh, please don’t go there. Ever since she broke up with him, it now redirects to Goatse.

JOE: Noted.

DENISE: Can I help you with anything else, officers?

JOE: No, I think we’ve got some good leads here. Pie for thought.

DENISE: Are you going to talk to James?

JOE: Might be our next stop. Certainly one of them.

DENISE: Can you kick his door down violently?

JOE: We’re supposed to knock, first.

DENISE: I won’t tell if you won’t.

JOE: Noted.

FRANK: Thanks for all your help, and the pie.

DENISE: Well, someone should get to eat it. I don’t want to anymore. Have a nice day, officers.

JOE: Ma’am. (Nods; the detectives leave the apartment)

JOE: Well, we’ve got a few places to go.

FRANK: Hey, Joe?

JOE: Yeah?

FRANK: Did you hear how she talked about Pumpy? What was that about?

JOE: No idea, Frank.

FRANK: I mean…do you think…do you think there’s something going on, there? Between them? Sounded like a jealous defense to me.

JOE: It’s an insulin pump, Frank.

FRANK: But she seemed…passionate.

JOE: It’s a small plastic box that vibrates, Frank. What use would a woman have for a relationship with one of those?

FRANK: ……

JOE: ……

FRANK: ……

JOE: Yeah, okay, but not with a pump. (Pause) Let’s go talk to her pharmacist and forget this ever happened.

DOINK DOINK.                             DOINK.

(Pharmacy. We see a pharmacist stocking shelves in a rhythmic fashion, much like a New York delivery driver).

PHARMACIST: Yeah, I seen her. I seen her…just two days ago.

JOE: You, uh, seen her?

PHARMACIST: I mean I know…I saw her. Sorry, I don’t know what came over me. I have a Master’s.

JOE: That’s right you do.

FRANK: He’s a stickler for grammar.

JOE: Now Mr. Master, where did you see her last?

PHARMACIST: She came to the counter, like usual. Right before closing, like always. If you don’t mind me saying so, she seems very disorganized.

JOE: Well, she has a faulty organ, so…

FRANK: Joe, quit it. What did she come for, sir? Was it dangerous?

PHARMACIST: Oh, very. We won’t release it without papers. (Confused pause) It was insulin. She wanted insulin. She has a prescription for it and picks it up every few weeks.

JOE: She doesn’t pick up a three-month supply? Most people do.

PHARMACIST: Look, she can’t afford it, she buys a vial at a time. I don’t ask questions.

JOE: Maybe you should ask why it’s so expensive.

PHARMACIST: Believe me, I wish I knew. I’d give her more, but my arms are tied. They find stuff missing, they call in D-Fraud.

FRANK: D-Fraud…that is one awesome job, though. Though, obviously less so for you.

JOE: Not enough money for insulin. And yet she could live in an apartment spacious enough to contain more than one boom mike.

FRANK: Joe.

JOE: How is that even possible?

FRANK: (coughs) Fourth wall, Joe. Fourth wall.

JOE: She could afford an apartment with four walls, and not insulin? Usury!

PHARMACIST: Look, guy, the pharmaceutical industry isn’t on trial here. I saw her, she came in, she took the insulin, she left. Said thanks, you’re a lifesaver. She always said that.

FRANK: She seem sad? Agitated?

PHARMACIST: Nothing out of the ordinary.

FRANK: You like her?

PHARMACIST: Sweet girl. I mean…you know what I mean. Always nice, always smiling even when stressed.

JOE: Thanks for your time.

PHARMACIST: Look, you catch this guy, you let me know. I got all sorts of nasty stuff you can use.

JOE: You got?

PHARMACIST: Have. Have.

JOE: Master’s?

PHARMACIST: Master’s.

Will Joe and Frank solve the crime? Will Connie wake up and eat pie? Is it James, or some mystery suspect who will be introduced at the last minute without adequate motive or backstory? Will the lab techs ever find a pattern in a logbook? Will the pharmacist develop a solution to his crippling case of Truck Driver Grammar? Some of these questions will probably be answered in Part Two if anyone cares, so tune in whenever that's updated!

Buffy the Diabetes Slayer

For comedy's sake, dressed as Vampire Willow

In my apparent quest to compare diabetes to pop culture, I suppose I always knew I would reach Buffy the Vampire Slayer eventually. My sentimental favourite show of all time, it aired at the perfect time in my life (middle through high school) to become a part of my growing-up process. I could go on and on about the show, but I won't. Suffice it to say that Buffy is the Slayer, sworn to do battle with the vampires (with some notable exceptions) and the occasional demon; knowing that one day she will lose and be replaced.  (This is, by the way, the only instance where I will compare myself to Buffy; everyone who knows me will tell you I'm pretty much a [pre-Tara] Willow, right down to the identical SAT scores.)

In the Broadway musical Title of Show, a vampire is defined as something that saps your creative ability, such as self-doubt, or negative people ("Die, Vampire, Die!")  In Buffy, vampires are a metaphor for a host of issues we all face as we grow up. In my life, diabetes is the vampire. I'm not just saying that because it sucks.  Or because it sucks a lot of blood out of me on a daily basis, but that is a fair comparison; because blood is a daily thing for me and for Buffy, it has a tendency to remind us of our bodies, being alive, and the importance of blood to both of those things. As Spike the vampire said in "The Gift," "Blood is life, lack-brain. Why do you think we eat it? It's what keeps you going. Makes you warm. Makes you hard. Makes you other than dead." It's a bizarre phenomenon when your own blood becomes the enemy, with too much or too little glucose spelling disaster.

I've been thinking about this because, in the process of introducing the fiance to the series, we recently watched the episode "Fool For Love." (Warning: spoilers for a couple of things in that episode lie ahead.) One of my favourites, its genesis lies in Buffy confronting her own mortality. She's doing better than ever in the fight, gets a bit cocky, and then gets staked with her own stake, by "just" a vampire: 

RILEY

So tell me about the bad guy- or guys. What do you think they were?

BUFFY

Vampire.

RILEY

How many?

BUFFY

One.

Riley is surprised.

RILEY

So... what? He was like a super-vampire or something?

BUFFY

No, he was the regular kind. He just beat me.

RILEY

That ever happen before?

BUFFY

I'm in the best physical shape of my life. I mean, if you're asking how it happened, I don't-

 Buffy desperately wants to find out what went wrong and how she can avoid this mistake from ever happening again. She obsessively scours the Watcher Diaries for answers that she can use, but finds nothing:

GILES

You didn't lose last night, Buffy. You just-

BUFFY

Got really close. I slipped up, Giles. I've been training harder than ever and still I... (beat) And there's nothing in any of these books to help me understand why. I mean... look, I realize that every Slayer comes with an expiration mark on the package. But I want mine to be a long time from now. Like a Cheeto. If there were just a few good descriptions of what took out the other Slayers, maybe it would help me to understand my mistake, to keep it from happening again.

Eventually, Buffy turns to Spike for answers. Though we find out how he's killed other Slayers (and a great deal of his origin story), we find out that it boils down to a couple of things. One, that every Slayer has a bit of a death wish, and without ties to the world, it might take over. And the other?

SPIKE

(nods)

[...]we just keep coming. But you can kill a hundred, a thousand, a thousand thousand and the enemies of Hell besides and all we need is for one of us- just one- sooner or later to have the thing we're all hoping for.

BUFFY

And that would be what?

Spike leans in close and whispers in her ear.

SPIKE

One... good... day.

And that's the thing about being a Type 1 diabetic. You fight little battles every day that keep coming up, over and over again.  You may be in the best shape of your life, a line of Buffy's that resonated with me because my latest A1c was better than ever. But there are complications, and things unaccounted for. There are reactions, and, most terrifying, there are lows.

As diabetics, we walk the fine line between secretly believing we're immortal and knowing that we've got this expiration date. In a way, we have more conscious control over what our bodies are doing than anyone else; in another way, we have much less, our bodies being essentially out of control with so many factors to deal with.  Buffy's super strong and quick, but she has to deal with all sorts of violently unpredictable outside forces that most people don't.

Whenever I have a frightening day with diabetes, particularly with a bad low, my thought process becomes like Buffy's. What specific thing did I do wrong? How could I have countered that move? How can I stop it from happening again, and become the Cheeto with the long-off expiration date?  It's even worse when I see news stories about Type 1s my age, slightly older, or younger than me, dying in their sleep. These tend to get circulated around the Diabetes Online Community in solidarity, because we're all upset. These become my Watcher Diaries, where I scan them trying to figure out how I'm different somehow. What mistake did this poor kid make? Was this guy a really hard partier? Were there drugs involved? Another condition? Did she stop taking insulin? To understand my impulse, there's no blame involved, just a psychological reaction. Most of the time, there is no specific "mistake" - I'm just like them. Even if there was a "mistake," I've made them all over the years, and I'm still here. And that's not because I'm a special Slayer. There is no "why." All of those people should be here still. And they're not.

Because diabetes slipped in and had One...Good...Day.

That's all diabetes needs to be the last vampire. One good day. The element of chance is a heartbreaker. What Buffy, and what I have to learn, is to see being the Slayer as both a quest with a long haul (the mission, the season-long arc) and with small, individual battles and episodes.

"The thing about the dance is, you never get to stop," says Spike. Diabetes is that dance. It's the Big Bad. In a way, it's a similar calling; not something you'd ever choose, but something that you have a duty to deal with, and can become all the stronger for. And you get certain "superpowers," like being bionic. You perform "spells" like Willow, except the magic is insulin, exercise, or sugar. (And sometimes, like Willow's spells, your combinations go awry.) The only difference is that, unlike the Slayer (for the most part, without including any more series spoilers), there doesn't have to be the sense of being totally alone, "one girl in all the world," even if it does feel like that sometimes.  In our community, everyone's a Watcher and a Slayer, providing some much-needed ties to the world. Plus, I've got my own Scoobies to keep me company. I wonder if I should start calling my lancing device Mr. Pointy?

In any case, it's a worthwhile fight.

Grr, Argh....

-Ilana

(All "Buffy" quotations from Fool For Love credited to Douglas Petrie; quotation from The Gift credited to Joss Whedon) 

Science Reporting: BE AFRAID. Be very afraid.

People with diabetes have a tendency to live a life tinged with anxiety. Why shouldn't we? We are at higher risk for pretty much every awful thing that can happen to the human body. Problems can accrue over many years, or one big mistake can kill us. Anxiety also occurs from the day-to-day stress of managing a complicated and unpredictable condition. But the third type of anxiety comes from other people. First, there's the subset of people who think we brought this condition on ourselves. It's not even as simple as the Type 1 vs. Type 2 debate (and heaven help you if you're a T2; it's so much worse). Even as a T1, more and more news articles come out all the time that come with the underlying message that I had an autoimmune reaction because I was doing things I wasn't supposed to (drinking milk...handling plastics...fooling around with certain brands of cosmetics as a child).

So, there's that. But there's also the subset of people who, now that we have diabetes, is convinced that UR DOIN IT RONG. (Or, in regular English, "you're doing it wrong.") This can involve, but is not confined to, what we eat, what supplements we might or might not take, what medications we may or may not be on, how many times we test, what range we feel comfortable being in, whether we do multiple daily injections or the pump, how much we do or do not exercise, and more. We make so many decisions every day that are implicitly or explicitly questioned by others. Anxiety.

And now we're being told that we're doing anxiety wrong - that is, we're not worrying enough, and we're not worrying about the right things.

"Diabetics worry about the wrong risks, Hamilton health researcher finds," says a new study.


"Canadians with diabetes tend to underestimate the life-threatening impact of the disease, a national study has found. They worry about the wrong health risks. Diabetics’ biggest concerns should be kidney and heart complications. Instead, they wrongly fear blindness, amputation or erectile dysfunction, the survey found."  (The study is, of course, sponsored by the Kidney Foundation of Canada and two pharmaceutical companies that I'd wager make drugs that support kidney health.)

First, in the picture, it looks like that insulin pen doesn't have a cartridge in it, which is actually vaguely disturbing to me. But that's beside the point.

On one hand, I appreciate the intent of the study - that health care providers should be working with people with diabetes to find strategies that will best support kidney and heart health. That is very important, and if patients don't know what appointments to make or precautions to take, it makes sense to do the study and apply it to the conversation between HCP and patient. But the framing of this article bothers me. It's not framed, "how can doctors better communicate what patients can do to help their heart and kidney health?" It's "look at those stupid diabetics, all scared about superficial things? Why aren't they more scared? About the things that REALLY matter?" Frame it as an education issue rather than an ignorance issue.

Apparently, worrying about silly little things like blindness, amputation, and inability to function sexually is just so uninformed. It's not what the cool kids are worrying about:

"This misunderstanding is 'quite concerning,' said Dr. Richard Tytus, a family physician in Hamilton and professor at McMaster University. 'The reality is that you won't need to worry about being blind if your heart stops beating or your kidneys shut down.'"

Har, har! That's a good one! I mean, really. This is the tone the article is taking.

If there's one thing that I know about diabetes, it's that people with diabetes are quite adept at worrying about many things at the same time. We have to. But sometimes telling us to worry about everything at the same time causes burnout.  If there's one thing I think WE HAVE EARNED, it is the privilege to worry about whatever complications we darn well want to worry about, even if they are "insignificant" things like losing our sight or feet. (There are certainly enough people without diabetes who, similarly "misinformed," love to tell us horror stories about how these things happened to Great Aunt Martha.)

Worrying about heart health is important insofar as it impacts some of the precautions, and potentially medications, that you take. The heart and kidneys should absolutely be part of the regular conversation with a health care practitioner. But, in reality, when it comes to the general process of taking care of oneself as a person with diabetes, it doesn't matter what complication we fear, as long as we are motivated to take care of ourselves. In fact, fear is kind of an awful motivator, even if it is effective.

It's nice to focus on positive motivators; several psychological studies have shown they tend to work better. When I exercise, weight loss is my motivator, whether I need to lose weight or not. I exercise, and get the blood glucose, mood, and energy benefits, whether or not they are my main motivators. I'm not sure anyone says, "oh, I'm only worried that I'm going to go blind, so I'm not going to take care of myself because that's not a big deal. If I were worried about my kidneys, I would do a lot better." (After all, the article doesn't say that these other complications aren't problems, just that we won't have to worry about them if we're dead.) The only thing we have to fear is fear itself. And a whole bunch of complications.

Complete apathy is a problem, but it's also nothing we can solve by blaming the patient. Most of the things we do every day impact every part of us. If there's one thing that might help, it might be ceasing to think of ourselves as a collection of unrelated parts, eye, leg, kidney, heart. Instead, why not think of the whole? One of the problems many people with diabetes find in their health care is being treated as a series of problematic parts, rather than a complete person where everything affects everything else. This often leads to the mental part of diabetes being ignored, which is a shame, as I'm pretty sure it's the biggest predictor of success with all the other parts. This study, or at least the reporting of it, focuses on the "should" - what we should be thinking - and not the "why:" why does this mental disconnect occur, and is it a symptom of a larger problem?

And, after all, isn't too much worrying bad for the heart?

-Ilana

EDIT: Here, for comparison's sake, is a MUCH better way of reporting the same study, with quotations from the same doctor that are much more complete and less dismissive. What a difference!

The Insulin Pump Cutie Mark

I probably shouldn't admit this, but I've seen every episode of "My Little Pony: Friendship Is Magic." (I blame a certain bell-ringing friend of mine for this development.) It's actually a lovely little show, full of strong female characters and gentle humour. For amusement's sake, have a couple of pictures of me dressed as one of the lead characters, Twilight Sparkle (who, like me, is a crazed perfectionist who loves school and books), ringing handbells at a My Little Pony-themed burlesque show (don't ask).

My hair doesn't normally look like this. Maybe it should.

Twilight Sparkle, or Sprinkles the DOC Unicorn?

In My Little Pony, one of the major themes is that of the Cutie Mark. A play on "beauty mark," it's found on the flank where a brand would normally be. In the world of the show, it symbolizes some great truth about who you are; something about your personality or talent, what you were "born to do." Having a cutie mark magically appear means you've come of age, a sort of unpredictable pony Bat Mitzvah where your vocation is revealed.

Where am I going with this? Good question.

Last night I went out with family for a birthday dinner for my mother. As is often the case, I decided to wear a dress. If any of you are pump-wearing ladies, you know the dilemma. Dress. No pockets. You want a slim, unbroken line. Where do you put it? One of the reasons I chose the Animas Ping pump was because it had a remote bolusing feature, so I could give myself insulin while keeping the pump craftily hidden in the back of my dresses. It generally finds itself safely under layers of undergarments. The last thing you want people to see when you're trying to look pretty is a glaring reminder of your physical defects.

After we got home, I was in the process of putting on my PJs when I noticed the result of the day's pump-stashery: a perfect impression of my insulin pump. (No pictures; I'd like to keep this blog relatively PG.) An insulin pump cutie mark, if you will.

If I were going to pick a cutie mark for myself, it probably wouldn't be an insulin pump. It would be comedy and tragedy masks, for my love of theatre. A pen, for my love of writing. Maybe a book, or something to do with teaching. But, as that silly little cartoon shows us, you don't always pick the things that define you. Sometimes they pick themselves.

There's a trio of small ponies in the show that are always trying to get their cutie marks, and finding that there's no way to force it. You may think you're good at something, but you may not have realized your hidden talent.

Somewhat coincidentally, I was diagnosed with diabetes the same year I had by Bat Mitzvah, or became an adult according to my heritage. It was a nasty welcome to "adulthood." But, of course, as mature as I was at the time, I wasn't really ready to be an adult. For years and years thereafter, I certainly wasn't ready to be an adult about my diabetes, and the numbers reflect this. After I finished grad school, I'd like to think I symbolically moved into the "Adult" world. In conjunction with this, I finally accepted that this condition was going to be a part of me forever, shaped up, and got my first insulin pump. What a dramatic difference in my life! The pump symbolizes my acceptance of diabetes, and my willingness to keep working at it, every day of my life. I may not be doing theatre, reading books, writing, teaching every day of my life (though I certainly hope to be). But I will be dealing with D, no matter what. Maybe it's not my talent, but it is my life.

I looked at my insulin pump cutie mark and smiled at how appropriate it really was. Maybe it's time to pitch a new kid's show: My Little Diabetic: Insulin Is Magic.

-Ilana

Chasing 6.9 (An A1c Story)

Image Credit: www.A1cbloodtest.net

Last week I went to my endocrinologist, full of hope. I had been managing myself better than ever over the past few months; more numbers in range than ever before, as far as I could tell. Due to some developments in my family, I had been eating lower-carb, and I had joined a gym and was trying to run at least three days a week. When I got to the office and the nurse called up my profile, I had to sneak a look at the A1c result as soon as possible.

It was my lowest ever. 7.2. And my first reaction was the prickling of tears behind my eyes.

Tears of disappointment.

I know what you're thinking. The lowest A1c result since she started taking these tests 15 years ago, and she's disappointed?

The problem is, I had just spent the past week congratulating myself on a number that didn't exist. Even with my constant mental reminders not to do this if I wanted to avoid disappointment, my brain had anticipated finally breaking the 7 barrier. I was prematurely convinced that 6.9 was my fate, as Dr. Zoidberg would say, why not? After all, I had done so much since I had last been in that intimidating office.

There was a post on another DBlog (I can't remember which, I'm sorry!) that talked about the danger of congratulating ourselves too much for good numbers, because it tends to lead to beating ourselves up for bad numbers.

Diabetes is a tyranny of numbers, both in the sheer amount of numbers diabetics deal with on a daily basis, and the weight of meaning those numbers hold. We tell ourselves not to internalize these numbers, but how do you not internalize numbers when they represent what's happening internally? There are carb count numbers, blood glucose numbers, A1c numbers, cholesterol numbers, blood pressure numbers, thyroid numbers (everything was good with all of these at my visit, which was amazing). There's also weight. This is another post entirely, but insulin promotes weight gain, particularly when low blood glucose results occur and eating everything in sight seems like the only option.  Of late, many of my hypos are linked to exercise, so a positive thing for weight that requires effort is often negated. Tighter control of one number (BG) leads to less control of another (lbs).  At this appointment, I found that, not only had I kept my A1c lower than ever, but I hadn't gained weight; I had LOST six pounds.

But I want to lose 40, even though I realize it's probably not realistic for me to go back to the weight I was at before I went on insulin, when nothing I ate was being absorbed by my body. (That's a subject for a whole 'nother post.)  So I was still disappointed. It wasn't enough.

I confessed my disappointment to my endo. "I was really hoping for a 6.9 since I've been trying so hard," I said.

"To be honest, I think you're fine right where you are. What's the real difference between 7.2 and 6.9? Practically, in terms of complications? Not much. What would 6.9 mean? Maybe more lows. I think I'd be thrilled if you stayed in this range every time."

That's right, folks. My endo, who I have had, shall we say, a tempestuous relationship with since Day One (another number), who greeted my numbers with dismay and irritation for years (because they were terrible), was telling me she was thrilled and proud and that I shouldn't be so hard on myself. It was so strange I almost laughed. "I've been the problem all these years, not her," I thought. Again, I had to tell myself that neither of us are the "problem," diabetes is. (Again, a subject for its own post.)

Maybe it's good that I'm disappointed by my best, because it represents a new mindset going forward with this condition. Maybe it's not, because perfection is impossible, and leads to burnout. What would I be "happy" with, after 6.9? 6.5? 6? We look for "magic" numbers in A1c, and in weight, but often even when they're reached, we're still not happy, because we secretly want more...well, less. Lower is never enough. What is it? Do we want to disappear?

As diabetics, we're told to "look at the big picture." Maybe that one result doesn't mean anything. Maybe that A1c doesn't mean anything. On one hand, this is helpful thinking, promoting neither complacency nor depression. One success or failure doesn't mean much, because it's one over a lifetime. But sometimes just looking at the big picture means that it's hard to be happy with the little victories, which is depressing in its own way. When you're looking at the rest of your life, with constant maintenance, what is success? In a way, you can't tell until it's over.

How do we manage to do both? How do we both reward ourselves for that small amount of weight loss, that small amount of extra control, while still remaining in the mindset that we still have to keep going? How do we simultaneously exist as Good Cop and Bad Cop regarding our own performance? I don't think that's solely a diabetic question; I think that's a human one.

It's good to celebrate moments; after all, as Stephen Sondheim observed, life is made of them. (Of course, if I'm turning to musical theatre, I could also tell myself to "kiss today goodbye and point me toward tomorrow.") Maybe I should celebrate 7.2. It's a nice number, without any of the hilarious sexual connotations (that I know of).  Maybe I should celebrate that a <7 number is even within the realm of possibility/expectation. Maybe I feel like I need permission to celebrate. In a big way, I thank my endo for telling me I could.

What do you think about celebrating the small stuff? Yay or nay? Good, or limiting?

-Ilana

Breaking News: No Breaking Contract for T-Slim Pump

Companies that produce healthcare products that save the lives of patients with chronic illnesses have a moral imperative not to trap their customers as if they had signed a monopolistic Canadian media company’s cellphone plan. There, I said it. I realize that the idea of “moral imperative” in the same sentence as the word “company” is so ludicrous as to potentially earn me a trip to the asylum, but I don’t care. In the past few hours I’ve heard about the T-Slim, a new pump that looks like an iPhone and apparently has an even worse contract-breaking penalty: you can’t. If this pump isn’t working for you and it’s not making your life better in the first weeks, as far as I’ve heard, you can’t give it back. This is unlike most other pump companies, so it’s causing a bit of a stir. I’ve also heard that Dexcom generally won’t let you do a trial run of their CGM sensors, though admittedly my info is from a DSMA-er on Twitter (can I even say CGM or Dexcom in Canada?)

The only thing consistent about diabetes is inconsistency. Your Diabetes May Vary is the phrase that rules the condition. Being expected to spend large amounts of money, whether ours, an insurance company’s, or the province’s, on a healthcare item we’re not sure is going to match the YDMV plan, is not only irritating, it’s stupid, and against everyone’s best interests, moral or not.

The province of Ontario will pay for a new pump for me every five years. Let’s say the T-Slim is available in Ontario and I choose to change from Animas in 2015, because ooh, shiny. (Warranties on most pumps seem to be four years, so I eagerly await my one year of terror between the warranty expiring and the government coverage – also stupid. If it breaks, what? I get to choose between my health and my savings? My health declines and Ontario has to pay for more hospital care later on? What about the unlucky person who gets a pump right before the artificial pancreas comes out and has to wait five years for proper care? I really hope there are some practices in place to deal with this of which I am unaware.) So, I choose this new pump, and it just doesn’t work the way I want it to. I can’t give it back! Five years until I can switch back. A lot can happen to your health in five years. Maybe Ontario does that because “a cure is just five years away!” Ha ha.

Choosing this policy is bad PR in a number of ways. First, it signifies an unwillingness to engage in dialogue, or to understand that YDMV, which belies a lack of understanding of diabetes in general. I certainly want to give my lifetime (or at least five-year) business to a company who doesn’t understand my condition! Second, it intimates a lack of confidence in your product. “No backsies” isn’t really congruent with “we stand behind our product.” Third, it indicates a lack of flexibility, which diabetes demands. It scares me away from even dealing with the company, thinking that customer service reps will likely be trained in “No.”

Finally, these companies need to be aware that we are long-term clients, customers, partners. They have us, likely, for life. Most people with Type 1 diabetes don’t like to be locked in to a product they don’t know if they can use, because we are all already locked into a condition that we can’t get away from. It’s an uncomfortable psychological reminder, when a company says “No backsies,” that diabetes has “no backsies.” We can’t give it back. It’s like the phone plan from hell; you can only break the contract by dying. Do you really want your product to remind us of the condition itself in that way?

When I went on the pump, my Animas rep worked with me. Since my insurance was non-existent, she gave me a lifetime discount on supplies that would bring them just under the amount that the government’s ADP program would pay. That’s why, in the end (even though it was the pump I wanted in the first place) I chose that company. Flexibility. Your life may vary. Understanding that it sucks enough to be diabetic without having to lose scads of money because of it. And you could give it back, no questions asked, if Pumpy was Just Not That Into You. This is smart thinking. Animas could get a slightly reduced amount for supplies for at least the next five years, if not for the rest of my life, or they could stick to their guns, demand 100%...and I would go with the pump company that was new to Canada and offering large discounts. Diabetes care companies should have a moral imperative to treat their customers humanely, but until then, if it's going to be about business, customers can have their say as well.

Pump, sensor, diabetes paraphernalia companies: you have us. For life. Some of you are looking at nickels and dimes. We’re looking at the rest of our lives.

Get the (big) picture? Let us try it. If it’s the right Diabetes Variation, we’ll stick with it.

We’re not going anywhere.

-Ilana

Diabetes Hero

So, as Diabetes Blog Week moves inexorably toward its closing hours, today's prompt looms heavy in the mind: Who is your Diabetes Hero?

 First off, Diabetes Hero would be the worst video game ever. There would be so many buttons to press. Why is it the worst video game? See my Friday post to find out.

Joking aside, this question, to me, is difficult to answer. A lot of people have been heroes to me along the way. The easiest answer is Drs. Banting and Best, for their discovery of insulin. The ultimate thing a hero can do, and the most common thing that people think of when the term "hero" is brought up, is saving someone's life. Banting and Best saved my life. I don't care if someone would have come up with it eventually; their brainchild is the thing that keeps me walking, talking, and living every day. It's also the thing that gave me a 2.8 low today, but it's a small price to pay for being alive. I also don't want to forget all the dogs who gave their lives to save the lives of millions of people; the unsung heroes of insulin. That's a huge price to pay for me being alive. Many animals continue to pay that price today, particularly mice, who have provided hundreds of helpful diabetes cures...in mice, but that don't translate to humans. I'm sorry, mice, that we haven't come up with a better way. I'm thrilled that, by the time I needed it, insulin could be completely synthesized.

A somewhat apocryphal part of my family history, in that I've never really managed to get all the details, is that I have a distant cousin named Clara who was one of Banting's first patients, and essentially beta-tested (beta-cell-tested?) insulin. It's a piece of my past that I'd really like to get more information on, to know more about her and to find out whether it's true! It would make sense; I'm from Toronto and so is my mother's side of the family, for a certain number of generations back, anyway. The mythical Clara is one of my diabetes heroes.

 My cousin Zack is one of my diabetes heroes, because his diagnosis at age 4 is the reason we found out about me well before I had any symptoms (even if it also was somewhat responsible for my initial misdiagnosis, because it was caught so early). I never would have been tested if not for him; even though the treatment I was put on at 12 didn't work, when I had my serious weight loss a couple years later, we knew it was my pancreas finally giving up; we knew what to do, so I never wound up in the hospital. I have never wound up in the hospital because of diabetes, and I think that's because of him. Seeing someone so young able to deal with diabetes, because it was all he'd ever known, made me feel like I needed to be up to the challenge, teenage rebellion notwithstanding. Ultimately, I am extremely proud of the young man he's grown up to be; not only a relative, but a friend.

My parents are also my diabetes heroes. They took my diagnosis in stride, and let me deal with it in my own way. I definitely could have done a better job, especially initially. But they had the confidence in me to not micromanage, and as a teenager, it was what I needed. I don't think micromanaging me would have had any better effect, honestly; the trust resonates much more strongly.

As I've grown up, I've had a lot of diabetes heroes. My friends have always been helpful and understanding, which means a lot to me. College in particular was an emotional road and people were always willing to listen. I'll never forget the day a friend of mine in freshman year went with me to CVS and, taking advantage of our new, "College Friends Forever!" friendship, got me to pick out a Medic Alert bracelet. Okay, I don't wear one today, but I kept the associated card in my wallet until it was stolen. (The wallet, that is. I doubt anyone wants to steal diabetes.)

In graduate school, my life changed a lot due to the efforts of two people in my concentration - there were only four of us, so we got pretty close. It was really the first time I had spent a lot of time with another T1. I know that's really bizarre, but it's true. I never went to support groups. I never went to D-camp, I just wasn't diagnosed at the right age. I had my cousin, but he's eight years younger than me. I knew a couple of friends from high school who were diagnosed with T2 when I was in college, but not while we were spending lots of time together. In a way, I liked that, because I didn't have reminders of my own condition. In another way, I liked that, because I was "special." There's only so much specialness you can deal with on your own, however. Meeting another Type 1 who was my age, was doing the same graduate work I was, and who even kind of looked like me - was spooky but awesome. It eventually helped me out of denial. She was definitely a "better" diabetic than I was, and for a while I thought I'd just keep accepting my role; I'd still be special because I was the "bad" diabetic. I was such a goody-two-shoes in everything else, but Diabetic Me was the rebel in all black, studded collar and tons of eye makeup, smoking behind the gym before class. But then I watched her journey going on the insulin pump, and that, plus a LOT of nagging (and I say that with love) from another friend made me seriously think about it.

The Diabetes Online Community is my diabetes hero, too. Being able to connect with so many voices made me realize that, in a way, we all think we're "bad" diabetics. That didn't have to be my specialty. It also made me realize that, when you fall off that diabetes horse, eventually you have to get back on if you don't want it to trample you. But the D-OC functions as thousands of helping hands to get you back on. I shocked my endocrinologist, a few months after finding the D-OC. I said, "I want a pump." I didn't have to ask her twice; she was so eager to hear those words that I was on one within a month. That started me on the road toward a decent system of self-monitoring, because the pump demanded it. Now, it's important for me to know how I'm doing. And I'm doing much better, thank you very much. On this journey, a small Diabetes Hero shout-out to the Animas rep who gave me a lifetime discount so that all my pump supplies would be covered by the monthly amount provided by the Ontario government. I know that's because having my business for life is better at a discount than not at all, but not having to pay out of pocket for one thing is great.

 Everybody who has touched my diabetic life is my diabetes hero. It's trite but it's true. Everybody with diabetes is my diabetes hero. If you asked someone to say or draw the first thing that comes to mind when you say "hero," it would probably be a fighter of some kind. A war hero; a soldier. A firefighter. And that's what we all are. We fight every day against odds that sometimes seem insurmountable; in a way, they are. The odds are literally insurmountable. We can't win. The best we can do is try, and see another day the best we can. Bravery is not the absence of fear; it's having the courage to fight in spite of that fear. The definition of hero seems to be a person who fights even when he or she knows he or she can't win, because it's right. That's what we do.

Because we're Big, Damn Heroes.

 So, as Diabetes Blog Week draws to a close, I'd like to thank all the Big, Damn Heroes in my life; family, friends, researchers, people I know from THE INTERNET, people I don't even know yet, but I'm going to. And, would it be too conceited to say that, in the future, I'd like my diabetes hero to be me?

Because I'd really like her to be.

-Ilana

Saturday Snapshots

Today's D-Blog Week prompt was "Saturday Snapshots." My first idea was to make a ransom note spelled out in test strips that said, "We have your pancreas. Give us all your money and time." But, well, I went out for a friend's birthday karaoke last night and what with all the singing and beer and cupcake and waking up late today, I didn't have time for arts and crafts (plus, it probably wouldn't have looked very good). Also, last night's party was a nice reminder, since I've been focusing so much on diabetes this week, that it doesn't actually take up all my money and time. So, instead, I'm going to show you three photos, that show the bad and the good of diabetes. The first represents the "bad." Today I gave myself a five-minute time limit to find as many diabetes supplies I could in my house. Five minutes, so this isn't everything. Here's a sample at what I have to store to keep myself alive:

That's not even everything, but it's quite the pile, huh? Now, for the good: the fantastic people who make up our community! Here are two photos from two of the three D-meetups I've been to, the first last summer, and the second in November. The first was quite an experience for me, because, well, it was the first time I'd thrown caution to the wind and met up with people I only knew FROM THE INTERNET. Clearly, they all could have created Twitter and blog accounts and been updating them for years just so they could meet me at a restaurant and murder me, right? Anyway, the famed k2, Kelly of Diabetesaliciousness, was coming in to town for a visit, so she organized a gathering of Toronto-area T1s, T2s, and one very furry T3 guide dog to meet at Wayne Gretzky's restaurant. I was really nervous and, when I couldn't find anyone, I almost left. That would have been a tragedy, because as soon as Kelly found me, I started to have a great time. In this picture, with me (both of the following photos are bad pictures of me), Scully, Virtue, Kelly, Larry, and Jamie, you can see the smiles on our faces, but you can't see how we talked for hours, had more in common than you'd think, or how we tormented (and entertained) the waiter having him take pictures of our rowdy crowd, friends after one meeting.

The second photo was taken on the occasion of Kerri's (Six Until Me) visit to Toronto. There was great confusion on my part because the coffee shop originally scheduled for the meeting was closed, but thankfully I found where the meeting was now taking place (well, after being rescued, anyway). It was a lovely meeting (photo: Larry, Jamie, Kerri, Virtue, me), and again, hours of talking (and gently mocking Kerri for deciding on an iced coffee in Toronto in November). These meetups remind me of the good things to come out of diabetes: friends I never would have made otherwise. The Diabetes Online Community is why I take better care of myself now than I ever have before. It's why I started this blog, and it's pretty much the best thing ever.

-Ilana

Diabetes: A Video Game, on "Hard."

Today's Dblog Week prompt is, "What is one thing you think people without diabetes should know about living with diabetes?"

Honestly, I know I've done this one before. My most comprehensive post on this subject is, and will likely always be, my Six Things post that I reposted several days ago. It really goes through all the aspects of who I am, what I do, and what bothers me about diabetes. So, I'd recommend reading that, if you're curious.

I don't want to cop out of this challenge, however, so I'd still like to express - and perhaps recontextualize - a few things.

There is an article making the rounds, by John Scalzi, in which he compares life to a video game, trying to recontextualize the idea of "privilege." He uses this comparison to try to explain that straight white males, in this "Real World" game, are playing on the lowest difficulty setting; you can still lose, but you tend to have fewer obstacles placed in your way.

I think this is a great way to describe diabetes to a person who doesn't have it. Playing the Real World game with diabetes sets your difficulty level way, way up. You're playing on the "Blood, Sweat and Tears" difficulty level of life.  It's not the highest difficulty level, obviously; there are many worse health conditions, and, for example, my Supportive Family With Relatively High Income, Awesome Friends, and Education bonuses help regulate the difficulty. But consider the following video game attributes:

1. Diabetes drains your Gold.  You need Gold to pay for a lot of things. In a video game, it's armor, weaponry, cool stuff for your avatar. In Real World, it's food, rent, education, entertainment, transportation and a host of other unexpected things. Diabetes Difficulty adds a level of cost that can be unprecedented, particularly if you are playing Real World United States. Even if you're insured, a lot of money goes to prescriptions; if you're not, thousands and thousands of dollars just slips out of your pocket. Diabetes is like an experienced Thief/Pickpocket that follows your band around, constantly stealing. Real World Canada at least covers your visits to the local wizards (doctors). This also removes points from Mobility and Choice. If you play Real World Canada, you don't want to play Real World US unless you have a very secure job offer, and probably not even then, because it might go away. If your job class gives you insurance, you don't want to switch job classes to one without insurance, even if it's something you'd much rather do. Even if you do have insurance, you're only allowed to hoard so many supplies at a time, which might not be enough for your needs; it just depends what Insurance Boss says.

2. Diabetes drains your Health. You start off with a shorter health bar, and it goes into the red fairly easily. You have to be sure that you don't hit the wrong prize cube, because getting any of those bottles with skulls on them means that you have Complications. Sometimes, when your BG is high or low, you move in EXTREME SLOW MOTION no matter what you try to do, and, like that one horrid level in Super Smash Bros., everyone's vision goes all fuzzy so you barely know what you're doing. (Of course, sometimes you just want to play Super Smash Bros. against Diabetes, and smash it. But Diabetes uses Hypoglycemia Attack! It's Super Effective!) You have to collect Insulin bottles to stay alive; if you don't have one on you at all times, your health starts draining.

3. Diabetes doesn't fight fair, and it doesn't stay consistent. Not only is this level harder, it doesn't stay at the same level of difficulty all the time. Some days are a breeze, and you wander around the level confusedly, wondering how you got through so easily; waiting for the Big Boss to appear. Some days the difficulty is extreme; trips, performances, when your glucose levels don't behave according to anything sensible in the laws of Man and Nature; these are the days when the entire playing floor is made of lava. You have to be consistently on your guard, because you have no idea how hard the next day is going to be, and the various bosses know all the cheat codes, unlike you. That means you're always a little scared, even on the easy days. You're especially worried about the upcoming Wedding level, because it's supposed to be the most awesome level in the game but you have no idea if the difficulty level will be set so high as to ruin the enjoyment. 

4. When you play a video game, if B is jump, whenever you press B, you will jump. With Diabetes Difficulty, sometimes when you press B you jump, but sometimes you fall down. Occasionally you will Super Jump, and once in a while B will cause your little guy to run directly into the nearest lava. You have to get used to pressing the same buttons in the same situations and not getting the same results.

5. Sometimes you worry that your raiding party will break up because the other players are sick of having to adjust to your difficulty level.  It's like playing an MMORPG all the time; it's addictive, you can't really stop, except your life actually does depend on it. But relationships are harder because you're always playing. Which sucks, because Diabetes Difficulty is a level you didn't even choose.

6. Your advisors can give you conflicting information, and are legally allowed to be 20% wrong, but that's all the information you have to make decisions on.

7. Very occasionally, you can use Diabetes Difficulty Level to your advantage. You might be better at monitoring your health than you were before the bar was shorter; you may have fans who know how hard it is to skillfully play a game at that level, and will give you a break if you're having a hard day. Most of all, playing at this level gives you a new appreciation for the game, and its world and character design. Because:

8. You only get one life. Screw up badly enough once, particularly in terms of taking too much insulin, and you're done; your little guy goes belly-up and there's that wah-wah-wah sound. In any case, there's never a victory end point; your perfect Diabetes Princess is always in another castle. Because unlike a video game, the point isn't to win. The victory is to continue playing the game, to choose to enjoy it as you go, and to try to make it look effortless.

-Ilana

Fantasy Diabetes Device

Today's DBlog Week topic is "Fantasy Diabetes Device." Sort of like fantasy football, but with more blood.

Anyway, this reminded me of the time I was asked by a research organization what sort of improvement I’d like in diabetes technology. So many things swirled through my mind – make stuff smaller – can I get a Pump Shuffle next to my iPod? Make stuff cheaper. Develop an artificial pancreas that works. Maybe a cure. Maybe insulin or a monitoring system covered by the government, a constant monitoring system that didn’t cost $50 for three days and was still inaccurate. But I’m a smartass. So in my mind, I just told them to make me a test strip that wants to LIVE, that isn’t designed to hurl itself directly into the bottom of my purse forever. No, it’s a real problem...a test strip without a death wish would be nice.

In reality, here is what I want: I want my device to take pics/scan my food and make a carb calculation to help me with my diabetes management. (If we’re talking wild fantasy, it will then remove at least half of the carbs and fat from the food while still leaving all the mass and flavour.) Then, I want it to test my blood glucose by scanning my finger, without a strip. If a strip must be involved, it is drawn back into the machine and is either incinerated or refurbished for reuse, so I never have to buy another one.

After it does this, my device will make the calculation of what insulin I need, and automatically deliver it. It goes without saying that the device is 100% accurate at all times and has no margin of error. The device will sense automatically when I am low if it is within ten feet of me, and make the necessary corrections. And it will occasionally flash affirmations about how well I’m doing. The device will be the size of a lipstick, and the pump will be either implantable or no bigger than a cartridge. It will be completely silent when I need it to be, such as when I am performing or watching theatre. My device is awesome.

You want to know the sad thing, though? Besides the carb-counting and removal abilities, my fantasy device still isn’t really as good as just having a functional pancreas.

-Ilana

One Thing To Rule Them All...I Mean, One Thing I Could Do Better.

Today’s Diabetes Blog Week topic is about something I could do better in terms of self-management. It’s telling that I had a very hard time coming up with even one thing I do well, for yesterday’s topic, and a very easy time with this one – I gravitated towards writing it first, because it was much easier.

 I’m not great at carb counting. I have the book. I try. But I seem to chronically underestimate, especially when I go out because I tend to eat complicated food and I’m not completely sure what’s in it. This is a particular issue because I love carbohydrates. They are tasty things. I would like to be better at restricting my carbohydrate intake. This doesn’t mean that I “shouldn’t” be eating anything in particular. I want to make it clear that a Type 1 diabetic can eat a perfectly normal diet. However, I know the results are better for my numbers in general, and for my weight, when I do this. In short: carbs, I wish I could quit you! (I love veggies and protein too, but they aren’t as problematic.)

I know this is “one thing to improve,” but I’d also like to confess that I’m not great at only using things for the number of days/uses that I’m supposed to. I reuse everything I can. I am, perhaps, the queen of blunt lancets (I’m not even going to tell you how long it’s been since I’ve changed mine, but you can guess if you want). I tend to milk my pump sites for longer than I should (and have paid for that, physically). I definitely reuse cartridges; a pump rep told me I could use them twice, but I almost always do more. I think that’s a product of frugality, fear that I won’t be able to keep the benefits at some point, and also my general frustration with how much waste material this condition generates. It’s not the greatest thing to be doing, though, and I’d like to get better at following the schedule.

Oh, and “have better test results” in general, but that’s so multifaceted, there’s no way it’s just “one thing” to improve! (And the more we realize that, the better for our psychological health.)

-Ilana

One Great Thing

When I saw this blog topic, I got nervous. I couldn't think of something I did well enough to blog about. First of all, I don't want to brag or make anybody feel badly if I said I did something well and a reader feels he or she does not. But, really, I was stymied in coming up with something to say; writing skill or academic achievement doesn't really fit here.

Achievement has always seemed to come in spite of diabetes, not because of it. I had always considered myself a sub-par diabetic. I can't be perfect at diabetes, or even very good most of the time. Is that my fault, or is it diabetes' fault? It's probably a lot of the latter. I'm not used to getting praise for trying hard. I'm used to getting praise for being good at what I do, or not getting praise at all.

I've had a few excellent days with the range of my glucose results lately, however, including one day where none of my tests were above 8.5 or below 4.6. I attribute that to a sudden decrease in carbohydrates in my household, not necessarily to myself. I've just joined a gym, and I've gone and exercised almost every day since I did so, but maybe I could exercise more, or harder, even though I'm just getting re-started. I keep trying to frame this in a positive light about myself. It’s hard to do!

And then, I thought: but I *do* try. I try all the time. I'm good at trying with a condition that’s extremely trying. I made a decision to change the status quo, which was me taking a laissez-faire, backseat attitude to my diabetes, being okay with not testing often at all, using diabetes to lose weight, and I turned that around to the best of my ability. Okay, I don't test 20 times a day. I can't afford to. But I test four or five. I never miss a doctor's appointment, and I have many. I get my various parts checked as often as I'm supposed to. I take an active interest in keeping my pump settings current. I got involved. I could have happily stayed stuck in my rut, especially because I've gained weight since I started on the pump, and I hate that. But I took my A1c down from 9 to 7.3 in six months.

I'm not sure if I have "one great thing." I have room for improvement everywhere. But I made a change in my life, and I stuck to it. And at this point, I think that’s pretty great.

-Ilana

Diabetes Blog Week: Find A Friend

Hey, everyone, welcome to the beginning of Diabetes Blog Week 2012 here on Diaturgy! Diabetes Blog Week is the brainchild of Karen Graffeo of BitterSweetDiabetes.com; she chooses a blog topic for each day of the week, and participants either follow these prompts or choose one of her Wild Card prompts if they're feeling more inspired by those than by the particular day's offering. This is the third annual DBW, but obviously it's the first one I've participated in, having only recently started this blog.

Today's topic is "Find A Friend" - connecting our readers to other D-bloggers who they may not know of or be reading. Most of the Dblogs I read are way more well-known than I am (I hope this week will help *me* find some new friends!), and I’m thrilled to have even gotten to meet various blogging superstars such as Diabetesaliciousness’ Kelly Kunik, and Six Until Me’s Kerri Sparling.  I really enjoy a lot of blogs, but I’m not going to point anyone to the most well-known Dblogs out there. I do have two candidates for blogs you may not be reading, however.

Jamie (@InkStain_D on Twitter) who I have had the privilege to meet a few times at awesome DMeetups (along with her husband, the equally cool Larry @MainDog101), has both a personal blog at Flying Furballs and a weekly blog/Internet roundup at InkStain_D, both well worth your time. She’s as welcoming online as she is in person!

I’m also inspired by the blog of my friend Sarah, who I became closer to after her T1 diagnosis two years ago yesterday, which, as many do, hit completely out of the blue – no family history, mid-twenties onset.  She has taken her diagnosis much better than I did (to be fair, I was 12); no denial, just using it as a positive, motivating force to know herself and her body better, and to push it to new (good) limits. Much of her blog has focused on her amazing achievement, running a marathon in Reykjavik to raise money and awareness about diabetes. She already understands that diabetes is a marathon, not a sprint, and blogs at diabetesmarathon.wordpress.com.

I'm excited about this week, and I hope we all find some new friends!

-Ilana