World Diabetes Day: Gain and Loss

It’s World Diabetes Day today. As I sat in “Sick Bay” in choir last night, not because I was contagious but because my blood glucose levels had spiked through the roof despite eating essentially carbohydrate-free for the day, I was thinking about how much I’ve lost because of diabetes, and how much I’ve gained.

I’ve lost time to feeling sick, shaky, sandpapered inside. Time to doctor’s appointments. Time to thinking and calculating and making dozens of tiny decisions every day.

I’ve gained three different selves: High blood sugar me, normal me, low blood sugar me. I’ve gained loved ones who can point out the difference between them nearly immediately. I’ve gained the worry that all of them are me, despite the radical changes blood sugar level can have on one’s personality; I don’t like that not all of them are pleasant.

I’ve lost sleep over feeling lousy or worrying that I might not wake up from a low.

I’ve gained a sincere appreciation of how wonderful it feels to have in-range blood sugars. Getting a ride home from choir last night, chatting up a storm and thinking how much better I felt with the absence of acid and sluggishness and pain, all I could think of was that some people, barring other illness, feel like that ALL THE TIME. THAT IS A GIFT. Please treasure it, if you’ve got it.

I’ve lost money to the insane expenses of treatments, medications, technologies. (I have not lost as much as many, thanks to luck, support, and country of birth.) 

I’ve gained empathy for others with chronic illness, and the knowledge that chronic illness absolutely shapes your experience of life. People with chronic conditions aren’t exactly the same as people without who sometimes experience illness, much like people who grow up in and live in poverty aren’t merely temporarily-embarrassed millionaires.

I’ve lost some of my inhibitions about talking about my experience with disability, and certainly a number around advocacy and asking people for help, though I’m not completely there yet.

I’ve gained weight, because it’s very, very difficult to lose weight with T1 unless you’re losing it through high blood sugars. 

I’ve lost the ability to do many normal things, like travel and exercise, without a lot of very careful planning.

Most importantly, I’ve gained a community, both of other people with diabetes from around the world, and the family and friends who are incredibly supportive and wonderful and kind. I thank you from the bottom of my heart. 

It’s World Diabetes Day, and diabetes is my world every day, as it is for so many others. Can we do something about that, please? Can we focus on gains that will help people, and not monetary gains for pharmaceutical companies? Can we take a real look at loss, and what that means for an individual, a community, a nation, a planet?

Or can I just gain a few hugs?

Thanks, friends.

Diabetes Awareness Month 2017: I Just Wanted You To Know.

November is Diabetes Awareness Month. I haven’t posted about it yet because, ironically, diabetes has been kicking my ass for the past few weeks, so I’ve been all too aware of it. If you’re my friend, I’m sure you’re aware of diabetes. I used to never talk about it, and now sometimes it feels like I never shut up about it, but that’s the whole point of a chronic, incurable illness; it’s not going away, and it’s all too easy to have it kill you. Diabetes is horrible in times of ease and routine, so the more stressful life is, the worse it gets; it’s a vicious cycle. Yesterday was particularly bad, and the worst thing is, it’s often bad without reason. Let me walk you through my set of choices. (This is long, but please, please read it.)

A normal human’s blood glucose levels should be between 4-6 mmols/L, with a person with diabetes’ ideal levels between 4-8. Even more ideal are levels that don’t rise to more than 10 two hours post-meal. Beyond about 14, things tend to feel pretty bad. You get thirsty, your eyes get sandpapery, if you’re me you get intense heartburn, you feel sluggish, tired, and generally crappy. At 4.0 or lower (we’re talking even 3.9), things are much worse. Even 0.1 into the danger hypoglycemia zone and there are shakes, your heart pounds, you start feeling like you’re going to faint. You may break out into a cold sweat, which is charming. You get thirsty. Your body screams at you to consume everything possible to stay alive.

Did I mention that your blood glucose meter is only legally required to be +/-20% accurate? That means that you’re asked to stay in a 4-point range, and yet many readings in the 4s can actually signify a low. You don’t actually know. Most of the time you have to trust what your body is saying as well, which is difficult, because your body likes to do a nifty thing called betraying you at every turn. Don’t get me started on the lot that befalls people with hypoglycemia unawareness. It can be incredibly dangerous.

Here’s what can affect blood glucose:

• What you eat (Carbohydrates, but not just that. If you eat a mostly-protein meal, you have to take insulin with a complicated formula or your glucose can spike. It’s not just cutting carbs. One of the meals that tends to turn me into a high blood sugar zombie is plain roast chicken and vegetables, no starch, which is generally looked upon as a very healthy choice. What’s the food’s Glycemic Index? Exactly how much are you eating? Is it any wonder a lot of people just say “screw it”? Are packaged foods good for you? Generally not great, but they at least have the carbohydrate information on the box.)
• What you don’t eat
• Exercise (this can affect you during exercise, and up to 18-20 hours after. Your blood sugar can crash during exercise or it can spike, based on the type of exercise you are doing and how long. It can then subsequently rise or crash during the next 18 hours, at ANY time. “Just go to the gym!” Not that simple.)
• Mood
• Stress
• Amount of sleep
• The weather (seriously. Sitting in the heat can raise your blood sugar.)
• Other hormones
• What time of the month it is
• Quality or age of insulin
• How many days you’ve had an insulin pump site in
• Where the site is on your body
• Your insulin resistance
• Your weight
• Alcohol (drinks can spike your blood sugar and then crash it hours later)
• The time of day (I require different amounts of insulin at different times of day.)
• Whether or not the little bits of plastic that deliver the insulin get bent or work properly
• How much you are working, and what type of work it is (physical, brain)
• The “dawn phenomenon” - a lot of people have blood sugar spikes at dawn. Some people don’t. Some people spike sometimes and not others. There’s no good way to correct for this, because the last possible thing you want is to take too much insulin while you are asleep, because your blood sugar might go too low and you might never wake up. It is a thing that has happened to far too many people. We take it seriously.

Does this convince you that it is NOT simply a matter of carbohydrates in, insulin calculation, you’re fine?

So let’s talk about my day.

Tuesday, I cleaned my apartment all day. I was stressed. It was a lot of physical work. I did not eat that much: an English muffin sandwich, some vegetable soup, vegetables. For some bizarre, unexplained reason, I woke up at 16.3. By the time I went to choir in the evening, I was a respectable 6.5.

On Tuesday night, I ate a sandwich from the local sandwich emporium for dinner. Before eating it, my blood sugar was 9.2. That’s largely fine. I was unworried. If anything, I was slightly concerned about all the scrubbing I’d done on my hands and knees over the day. Would it tank my blood sugar overnight?

At 3:26am Wednesday, I wake up. I feel terrible, so I check. 17.7. Before the past few weeks, I had not been getting these numbers regularly, so this is especially inexplicable. But, the new landlords are coming to inspect the place and I am involved in a labour dispute, so there is semi-constant stress. I curse silently and take the right correction, hoping that it’s not too much of a correction.

I get up around 8:15am to await the landlords who never show up (stress, sitting and waiting). I don’t feel great, but chalk it up to stress. At noon, I decide to eat something. I check. I am 19.9. This is a horrible number. It’s higher than where I was at 3:30am. I TOOK MORE INSULIN AND I ATE NOTHING. Talk about inexplicable. I decide there’s probably a problem with my site, because the Unomedical sites compatible with my Animas system (did I mention Johnson & Johnson are pulling out of Canada due to a lower profit margin than they wanted, leaving those of us who use the Animas in a really complicated and crappy position? No more tears, indeed!) So I take more insulin. I eat my English muffin + protein, because it’s been more than 12 hours since I’ve eaten anything. I change my site, because I gave myself insulin, but who knows how much got through. On a whim, I give myself five more units of insulin with the new site, assuming there’s been some blockage/leakage.

I have felt bad all day, but that doesn’t stop me (well, thanks to Claire) from going to the gym. Before I go, I check. 7.4! YES, finally! My 5-unit gamble paid off. Without it, I’d still be sky-high from nothing. So I eat some asparagus soup, very low calorie and low carb. I take a little insulin for it. I reduce my basal rate by 50% for two hours (if you want to go exercise, you need to plan to start this an hour before. If plans change or something comes up, whoops, now you have to deal with that!)

I spend an hour at the gym with Claire. I run a couple of miles, do a bunch of weight machines, leg exercises, stretches, etc. I am doing good things for my body. I am being healthy. Claire and I decide to go to a storytelling show, that is, appropriately, about blood (the organization Bloodwatch and the tainted blood scandal of the 1970s-80s in Canada). First, I need to eat something. The only place around is Subway, so I have a small sandwich, mostly vegetables. I check and I’m 4.1, but I feel like I’m going low. I could already be low; remember, +/-20% accuracy. So I eat the sandwich and modify the amount of insulin I’m taking to about half the sandwich. It’s not like I’m eating raw sugar; it’s going to take a bit to bring me up.

During the 2.5 hours in the storytelling evening, which is absolutely fascinating, I consume one beer. It’s a gose, not super high in alcohol. We decide to go to a bar afterward. I’m sitting at the bar, and I don’t feel great, so I test myself. 16.2. What in the everloving hell. It’s terrible again. So, in the hour-plus at the bar, in which I consume one more beer (not particularly binge drinking), I take a little more insulin.

I get myself home at about 12:15. I’m hungry, because I’ve eaten maybe 1000 calories that day due to weird blood sugars. But I’m a little TOO hungry. And I feel out of it. Looks like the beer and the exercise and the insulin have finally come together to do their unholy work. I am 3.0, and from the way I feel, I’m dropping fast, headed into the 2s and beyond. Eat everything, screams my system. Eat it all, NOW. I eat plain sugar by the spoonful. Blech. I eat four fun-size Mars bars, which seem bitter after the sugar. I eat some cereal, no milk. I feel I have undone my entire workout. After sitting and shaking for what seems like forever but is probably just a couple of hours, I feel secure enough to fall asleep on the couch. I don’t have the energy to stand up and go to bed.

It’s 4:45am. I wake up, and feel a little queasy in anticipation of how badly my sugar must have rebounded after what I’ve eaten. I check. I’m 11.3, which is honestly not so terrible. I take a correction and drag my ass to bed.

I get up at 8:15 to await the building manager. I’m exhausted. Out of reflex, I check. I am 5.5. I am exactly where I want to be. It is perfect, for only this moment. I have won, for only this moment. I am too tired to enjoy it. It will be different in an hour, in half an hour, in fifteen minutes.

I will still go to the gym today.

This is a bad day. Not all days are like this. I have had pretty good control these past years, all things considered. But it is not the worst day, either. So, on Monday, when the endocrinology resident asked “how are your blood sugars,” I just laughed, and said, “Well, it’s day to day, isn’t it?” Because that’s what it is. It’s day to day, and it’s all day, every day. And with all this, I have a graduate degree, freelance, (generally) have a more than full-time job with millions of factors in itself, go to the gym, perform in various arts groups, do theatre reviews, organize hundreds of interviews, and generally volunteer for just about everything under the sun to make people happy. Sometimes, it feels like a miracle. In the past few weeks, because of the strike, I have realized how very tired I am. This does not mean I will stop.

Don’t get me wrong. Other people have it much worse than I do. I do not need to worry about running out of money or support. I have an incredibly kind network of people out there. I am privileged. Thanks to Dan, I even have health insurance, but that doesn’t touch the day-to-day work of this.

So that’s Diabetes Awareness Month for you. Next year, I will still have diabetes, though other things may be different. I will still be the person that I am. I will still be trying very hard. I will post again.

I just wanted you to know.

Diabetes Blog Week 2015 Day Four: Changes (Where No D Has Gone Before)

Today's topic is Changes.

Today let's talk about changes, in one of two ways.  Either tell us what you'd most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you? (Read all posts here)

I have been watching a lot of Star Trek: TNG with my husband lately (it’s my first run through the series), and though it appears that they’ve cured a lot of things in the 24^th century or what have you, when it comes to changes, I’ve really got my eye on that replicator, and how useful it could be with diabetes as it is now. There's a reason they call it the Enterprise D, right?

The food replicator could create anything you needed, with whatever nutrition you needed (I’m assuming it makes food that tastes the way you want it to with only the requisite survival calories, as otherwise it would be very difficult for the entirety of the future population not to weigh 600 pounds apiece). Chocolate sundae, 20 calories, five carbs please! Or, if it couldn’t do that, at very least it would be able to tell you exactly how many carbs there were in your food. No more SWAG-ing.

I got this, don't worry

Or, you could be, like, “hey, replicator…replicate some insulin into my pancreas” and the replicator would be like, “hey, man, what do you think this is, kindergarten? I just whipped you up a brand new pancreas.”

And Bev would be like, “who cares about all that? I’m an awesome space doctor and will just wave a buzzing thing over you and you’ll just be fine. Don’t worry about vision complications. You won’t get them, but in any case, we have sweet visors now.”

Anyway, yes, the replicator. Changes for now, right? You could make instant Dex tablets and Glucagon, and expiry dates would be a thing of the past. You could replicate medications and replicate out the side effects, and you wouldn’t have to pay half your salary to do so -

And Bev would be like, “why are you bothering with Glucagon? If Picard can have an artificial heart, you can sure have a perfect artificial pancreas. Or, here, let me just wave this buzzing thing as you lie under a silver lamé blanket for a few minutes and you are totes fine! Enjoy your space adventure.”

(I know it's really called a "medical tricorder.")

But what I’m really talking about, of course, is the replicator! You could use it to make beautiful crystal blue circle jewelry, and signs for your diabetes walk. You could create petitions with hundreds of thousands of signatures for funding for research. Maybe you could even fund research with a replicator. You could create perfect footwear, which would never damage your sensitive feet. You could ask the computer, “Computer, what is the status of my blood sugar?” and Majel Barrett’s voice would always reply, “a perfect 5.0!” (this is the FUTURE and everyone uses METRIC like Canada, you know).

Then Bev would be like, “hey, I’ve cured you twice already. Stop worrying about this crap. Go to the Holodeck and beat the shit out of a personified version of your immune system for a while for some catharsis, or talk to Troi, I don’t know. Diabetes is OVER. Did you not see the buzzing thing?”

And you’d be like, “Working pancreas! ENGAGE!”

Sorry, I got sidetracked. I was talking about the replicator and all the cool things we could use it to make to solve most of our problems, but I guess we’d just be replicating a bunch of band-aids.

What we need is that buzzing thing, and the cure.

Make it so.

Damn straight.

Diabetes Blog Week 2015 Day One: I Can.

Welcome to Diabetes Blog Week 2015! Today's topic: I Can.

In the UK, there was a diabetes blog theme of "I can...”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could?  Or what have you done that you've been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

"You don't think I can love you/But I can, and I will, and I do" -Barenaked Ladies

These lyrics are the first thing that popped into my head when I read this prompt. I thought they were off-topic, honestly. I parody songs often (it's a sickness, really), so I'm no stranger to songs stuck in my head, ready for a twist. Taken out of context as they are, the lyrics whirled insistently through my brain.

Diabetes, you don't think I can love you/But I can, and I will, and I do.

Do I love diabetes?

Do I love it for the right reasons?

Anybody who has known me for more than two seconds knows that I am fiercely proud of my academic achievements. I roar as a Princeton Tiger and as a Columbia Lion. I've always graduated with high or highest honours from wherever I was enrolled. I've done it while often feeling unimaginably terrible.

Diabetes, you don't think I can…But I can, and I will, and I do.

I've only rescheduled one test due to diabetes. I very, very rarely called in sick to work while I was in school. The one time I remember doing so, I was supposed to go into scene shop, lift heavy wooden sets and possibly use power tools, and because my blood sugar was so low I could barely walk under my own steam, I figured it wasn't safe for anyone. The only time I took a paper extension, I was real people sick with walking pneumonia, and I didn't ask for it - I looked so bad that my professor unilaterally declared that I was taking one.

Diabetes, you don't think I can love you/But I can, and I will, and I do.

In a way, I think diabetes made me tough. Sometimes, I actually enjoyed it. One perverse thing about university culture (and I think it's pervasive in our culture in general, with the higher-powered professions and schools most heavily invested) is that we like to brag about our hardship. You got four hours of sleep? Child's play. I'm running on three. You wrote fifty pages this week? I wrote a hundred. You did it with a cold? I did it with bronchitis…and with diabetes. Hard to trump. Diabetes can make you "special" in identity, or in hardship; sometimes for the right reasons, sometimes for the wrong ones. Shakespeare, in his play Antony and Cleopatra, differentiated between Roman and Egyptian cultures. He billed the Egyptians as being in touch with both nature and their own senses, ready with passion, love, and a sense of enjoyment, from which they drew their power. Romans were in love, instead, not with themselves and their world, but with a sense of order and duty. How loyal could you be? How much could you work? How much could you sacrifice? Shakespeare's Romans were in love with hardship.

One of the things about "I can" is that many of us, as people with diabetes, feel we have something to prove. We want to show that we can do just as much as anyone else. This can be a great motivator, driving us toward success. It can also turn a person into a hardship-loving, hard-driving, Shakespearian Roman.

I'm doing this without an insulin pump.

I'm doing this without checking my blood sugar regularly.

I'm doing this without letting anyone in.

I'm doing this without a support network.

I am the best Roman. I am a CENTURION.

I can, and I will, and I do.

When I achieve something, or strive to do so, I am slowly learning to ask myself whether it is something I want to do, or something I feel I have to do, because it's so difficult. Do I have to play the game on the most difficult setting? Do I have to fight this thing at all turns?

Paradoxically, asking myself this question is one of the hardest things I've ever had to do.

Less paradoxically, it's been one of the most rewarding ones.

It may be a mistake to talk about loving diabetes, because, if I think about it a little more, that's just a slipcover for the heart of this thing. The lyrics don't even refer to diabetes. They really refer to me. How I learned to stop worrying and love diabetes is really how I'm learning to stop loving hardship and to love me.

Five years ago (in fact, I finished graduate school five years, less one week, ago), I found myself out of school for the first time, and I was unemployed. I felt rudderless; I had my achievements, but right now, I had no work to be doing. It was a perfect time to discover a support network in the Diabetes Social Media Advocacy network. Talking to dozens of other people from around the world, I found the hardship lessened, and that it wasn't a weakness; it was a strength. The Roman in me was always primed for war. The other side realized that making peace with the enemy takes more cunning than going in, guns a-blazing. Not only that, it's actually harder, but in a good way. June Callwood, in her wonderful article "Forgiveness" that she wrote at the end of a brilliant life, quotes a source as saying, "anyone who thinks forgiveness is for wimps hasn't tried it." Callwood then writes, as hard as forgiveness is, "it is worth the candle." Letting myself feel better and have the space to heal was a way of forgiving diabetes, and loving myself. Giving myself more tools to do better (an insulin pump, regular testing) is a way of loving myself. Going to the gym now, running up to 10K at a time, something I would have laughed at the concept of me doing - yes, another gift to myself.

I am still guilty of "being tough." When I smashed my dominant arm's elbow into two pieces a couple of years ago, I only took one day off work after the surgery to put the pieces back together, and the only reason I took that day off was because I woke up and I physically could not move. When I brag about that - as I have done - I realize I'm being a Roman again.

But I'm getting in touch with Egypt.

Can I promise I'll never fall back into those ways? Probably not. I still need some of my drive. I'm still overcommitted, but I'm mostly overcommitted to the things I love, and in which I can take real pride, not just hardship-pride. I love being a professor. I love having written a course that is now required for every student taking a BA program at my school. I'm trying, however, to achieve all of this with myself, rather than against myself. To make the hard choices to make things a little easier.

I can, and I will, and I do.

18 Years.

Today, my diabetes is an adult. On March 18th, 1997, I was diagnosed with diabetes. That makes 60% of my life I’ve lived with this boarder, and I’ve never collected a dime of rent.

I almost feel like a proud parent. I’ve officially shepherded this chronic illness to maturity. It can now vote, though it’s always had a certain amount of say in how I spend my day. As someone who will probably never have actual children, I will have to use this as a proxy sense of accomplishment.

As many parents do, I had no idea what to do with diabetes in its infancy, and I didn’t even know what type it was going to be (who knows, with kids?) I was not very good at discipline and maintaining order at the start, which set it on the wrong track, because we hadn’t learned to have mutual respect for each other. I kept trying to give it time-outs, which never actually worked.  I kept trying to do everything on my own, which rarely works out well. It got older, and brattier, and more rebellious, until it found its true identity. I dealt with the terrible twos to the terrible teens, and there were definitely some serious growing pains. Diabetes began to develop a personality, and I saw myself in it. When it hurt, I hurt. When it was calm, I was happy. When I saw a good number on the report card, I felt a sense of serious pride from my guidance, though I knew there was only so much I could influence and control. I began to develop a grudging respect for it as an individual. It had survived, and so had I.

It’s settled into adulthood rather well, and certainly became more mature. Oh, sure, I still sometimes forget my extra insulin at home when I’m about to spend twelve hours at the office (which I…may have done this month), and no-one said adulthood was easy, or that adults can’t be as ridiculous as children much of the time. The successes, however, are beginning to outnumber the failures:

This year, I kept my A1c in the low 7s. The 6s still elude me, but who wants to peak at 18?

This year, I received my first and second blogging awards from the Diabetes Online Community, and I completely missed the first one until I found out about the second. I won “Best Motivational Post” for my May DBlog Week “Mantras and More” entry from the Best of the ‘Betes Blogs (a monthly event with a changing adjudicator). I had no idea until I found out about the “best posts of the year” roundup and was shocked to see my name among some amazing company. Anyway, tying for the best motivational post of 2014 was absolutely stunning to me. Why? Because when my diabetes was a kid, and when it hit teenagehood, I couldn’t even motivate myself. Now I’m flying.

Then, this year, I did something that lots of people do when they become adults: I married the love of my life. Diabetes was by my side the whole day, like a junior bridesmaid or a particularly annoying ringbearer. Even though I was so nervous I could barely eat before the ceremony, it still

BG check pre-ceremony

gave me a 15.8 with all my jitters. After the insanity of the day, my parents accidentally took my purse with my meter home with them for the night, so I was flying blind at the hotel. But I never went low, I never felt sick, I was normal through dinner and after, and I never crashed, because, let me tell you, the day was one huge high.




Diabetes did not keep me from the most beautiful wedding cake I’d ever seen. It remained on the periphery through the perfect, magical, heartfelt and hilarious ceremony. The Playbills were perfect. The vows were perfect. The pictures were great. The dancing was spectacular. The photobooth was a hit. The food was delicious (and I got to eat it). I threw the flowers off a balcony, and I didn’t hit the chandelier. My pump didn’t get caught in a garter, nor was too bounced around when we were lifted precariously on chairs. Diabetes kept its distance when I danced with my father and hugged my mother, when they walked me most of the way down the aisle. Diabetes came with me the rest of the way: it’s an adult, and so was I, forging ahead. Diabetes listened to my husband promise “in sickness and in health” and mean it and so much more.

I was so worried that it would ruin the best day of my life, but it didn’t, and that’s what it was: the best day, the perfect day, a day I can’t even encapsulate in words and have been scared to try. It didn’t ruin my day. It was just a part of it, because it’s a part of me.

I have been so worried that diabetes would ruin my life, but it hasn’t. It was just a part of my life, because it’s a part of me.

Just like at my wedding, diabetes is always there. But I am surrounded by love, so much love from my astounding, wonderful family (with a “husband’s side” now) and friends. That love didn’t start at the wedding, and it didn’t end after it. Love is a part of my life. Love is a part of me. Love, I have found, is a part of learning to share your life with diabetes.

So, as my diabetes officially becomes a legal adult, I feel nothing but love. It’s an illness, an identity, and a journey. It propels me on a journey of self-discipline, analysis, and growth, which is what all good conditions, the human one included, do. Anything can be traumatic or redemptive, or both, depending on how you view this journey. After all, life is a degenerative disease, if you look at it a certain way. In another light, though, it’s the next step toward evolution.

Strips Do Lie (Stripkira Feat. Highclef Jean)

A while ago, I wrote a fairly popular post (called Liar) about the revelation that test strips could read +/- 20% of reality and still be within FDA guidelines; the idea was that this was one more lie that people with diabetes have to deal with (and, in fact, deal with it several times a day). When you don't know where your glucose level really is, how can you properly manage yourself? I hear that the FDA is welcoming public comments on their proposed new guidelines for safer meters and strips (you can read about it at StripSafely, here). While I doubt they would publish the following, I thought that I've already gone the angry route, so why not the lighter route?

In my college years, "Hips Don't Lie" was omnipresent at the clubs on party nights (here it is for reference). It popped into my head the other day, and I thought, your hips don't lie? Well, my strips DO lie! 

Thus, I present to you: "Strips Do Lie," by rising pop star Stripkira, featuring Highclef Jean (though a part of me wishes it were Notorious D.O.C.). I did the best I could with the song's incredibly loose meter and rhyme scheme (I hate slant rhymes, but the original's full of them!):

Blood up in here tonight,

No Error Fiving, no Error Fiving

Capillary action up in here

No Error Fiving, no Error Fiving

Strip Safely, Strip Safely

I never really knew that strips could fail like this

Turns my chart data into gibberish

Am I high (si) or low (si)

Or somewhere in the middle (who knows, si) -

Strip Safely, Strip Safely

Oh strippy when you read like that

You make a woman go mad

So be wise and keep on

Reading the signs of my body

And I’m low tonight

My strips do lie

And I’m starting to see the light

All the aggravation, the tension,

You must see this is short of perfection

Hey strip, I can see your numbers changing

And it’s driving me crazy

You don’t seem to know where you are ranging

Accuracy is hazy

And when you have such a margin of error

Nobody can ignore the way you treat my body, strip

And everything so unexpected – one-test it, two-test it

And oh the numbers so different

Hey strip, I can see your numbers changing

In a forty percent span

And so I don’t really know what I’m doing

I can’t seem to make a plan

My will and self-restraint

Have come to fail now, fail now

See, I am doing what I can, but with bad info

That’s a bit too hard to calculate!

I never really knew that strips could fail like this

Turns my chart data into gibberish

Am I high (si) or low (si)

Or somewhere in the middle (who knows, si) -

Strip Safely, Strip Safely

Oh strippy when you read like that

You make a woman go mad

So be wise and keep on

Reading the signs of my body

And I’m low tonight

My strips do lie

And you know that isn't right

My life hangs on each injection,

You must see this is short of perfection

Oh you know I’m low tonight

My strips do lie

And it’s giving me a fright

If you’d be a little more accurate

Oh, I’d even change out my lancet

No Error Fiving

No Error Fiving

Strip Safely

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Ode to an Insulin Pump (D-Blog Week Day 6: Diabetes Art Day)

Today's D-Blog Week prompt:

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

This is tough for me, as most of my blog seems to already be diabetes art of some kind! You could check out the beginning of a mystery novel here, song parodies here and here, or the beginning of a diabetes Law and Order episode here (I will finish that someday, but I don't have the energy right now)! I get intimidated by art prompts, as I consider myself (or have been considered to be; sometimes I doubt myself) some kind of writer. I actually have a short diabetes-based relationship play I wrote back in mid-college when I was trying to figure things out for myself; I'd post it but I'd probably embarrass myself.  So today you get something quick and dirty: a Shakespearean sonnet parody (okay, I might be one of few people who call a Shakespearean sonnet parody quick and dirty). Diabetes seems to lend itself to Shakespeare; it's full of both wild comedy and high tragedy. If you want to quibble about the occasional extra syllable leading to a "feminine ending" of a line, I say it adds to the analysis, as a "feminine ending" often relates to indecision or distress.  Anyway, now that I've analyzed myself, I leave you with:

Ode to an Insulin Pump

Shall I compare thee to a pancreas?
Thou art external and more temperamental
Rough numbers do shake me as the hours pass
And homeostasis, achieved, seems incidental

Sometime too high the glucose rises up
And my once-pale complexion turns to rose
Or dropping fast, an orange-juice-filled cup
Must quell my shakes ‘fore everybody knows

Thy Bolus Wizard magics up a dose
Thy Basal, steadfast on its course it stays
And though you help me as I keep you close
Still, I feel you are shortening my days

My true one vanished, leaving but my fears:
That cruel promise, to “wait but five more years!”


-Ilana

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

Latitude and Longitude

Today is a day that students and teachers at my college anticipate (and I'm sure some dread) alike; the first day of a new semester. It's a fresh start, full of possibilities; the frightening prospect of failure twinned with the giddy prospect of success. I feel it too. Will my students click with me, or won't they? Will they be excited to learn, or will they drag their feet? In terms of "fresh starts," yesterday I also joined a gym for the summer, in the hope of dropping some weight, but more importantly getting in shape and helping my blood glucose numbers. Ideally, I'd like to be in shape enough to be able to be active and sing at the same time.

So many hopes, so many possibilities.

Diabetes is doing its best to stymie both of my fresh starts today.

My first class today was lovely. My students seem nice and engaged. As they were finishing class by writing a diagnostic, I wondered why, then, did I feel the need to throw up? A quick look at my side showed that my site was no longer inside said side. As students wrote on, I tested at 18.6, and then, as the class ended and some students stayed after to finish up, I couldn't take it anymore and changed my site, hiding behind the professor's podium. (I think they were nursing students, so they've probably seen worse.)

I was going to take an exercise class at 2pm, but I still am not doing too well and I haven't eaten anything yet. It's perhaps heartening that a number like 18.6 can do this to me, because it shows my results have been better lately.

In the TV show The West Wing, Sam Seaborn, the show's idealist, has his world uprooted. He says, brokenly, "it's just there are certain things you're sure of...like latitude and longitude." As diabetics, we have this notion tested again and again. We used to be sure of the function of our bodies; that they would take care of us, always be functional until we aged significantly. Sure of things like latitude and longitude. Our bodies have proven otherwise.

Now, we place great trust in our devices. We try to believe that they will never fail us. We place our lives in the hands of plastic and metal and batteries and medical research, sure that they will work; sure that they will always deliver some sort of base measure of performance. Like latitude and longitude. We know this isn't true. Plastic fails. Metal fails. Batteries are spent. People get sick. People die. We take a lot on faith. Like latitude and longitude, which are invisible.

Donna tells Sam that, according to CJ's cartographer meeting, he shouldn't be so sure about latitude or longitude. The more we know about our condition, the more we know we can't be sure of anything. That BG result? 20% margin of error is apparently acceptable. That cure? Mice only. That pump? Defective model.

Life is precarious, but there are some ideals that are worth hanging on to. Like Sam's idealism. Like latitude and longitude.

Like tomorrow's fresh start.

-Ilana

PSA of Errors

Hi everyone. I’d like to draw your attention to a condition that affects almost 100% of diabetics.  Most of them don’t realize it’s happening until it’s too late, so it’s important to raise awareness.  The condition is not treatable, and once it happens, there’s no going back: you just have to live with it and start again.

Error Five sneaks up when you least expect it. Causes are varied and often unforeseeable, including: not enough blood, strip drop, and premature application.

Symptoms include: sweating, shaking, blind rage, swearing and, in severe cases (such as when it coincides with Last Test Strip syndrome) projectile launching of the meter in question.

Please join me in fighting this evil scourge, friends. Error Five has held us in its thrall for far too long. Burn it down, gentlemen. Burn it down, and salt the earth.

--------

Sorry for going all S4 Buffy on you guys, but sometimes you just have to. Error Five, for the uninitiated, is the error many of our blood glucose meters give us when something goes wrong. Either the strip refuses to “take” and doesn’t register the blood, or there’s not enough in the first two seconds, or you jumped the gun and tried to test immediately, leaving your “message” before the beep instead of after.

I liken the feeling of the loss of a test strip to when you lose a dollar to the vending machine; the dollar value lost is about equivalent, particularly without insurance. Sure, it’s not the end of the world, but it’s annoying enough to potentially ruin your day or send you over the edge if the rest of your day hasn’t been particularly good. Maybe you really wanted that candy bar, or that test result. Maybe, in either case, you’re low. It’s a message that the mechanical gods are winning. At least on a vending machine there’s somewhere you can call or write to potentially get there money back. With strips, not so much. If you’re restricted in the amount of strips you can get, it might even mean one fewer test you’re able to do. It’s kind of ironic that a (Canadian) perfect test number and this irritating error number are the same; sometimes I’m tempted to look at an Error Five, just declare my BG is 5, and celebrate.

It’s just a reminder of how the deck is stacked, and there’s nothing you can do about it.  At least, with a vending machine, success means that you score a bag of chips or candy or gum that you have already paid for. With Error Five, not only is “success” already unpleasant enough (making yourself bleed, a possibly bad number), but “failure” means you have to do it again; one more poke, one more dollar.

Error Five is a mild condition, when compared to all the conditions and complications associated with diabetes. It’s just a condition I wish none of us had to deal with.

-Ilana

Six Things

For any of you who have known me for a while, this is an old post from an old blog, but I really feel it belongs here instead. I wrote this post to celebrate World Diabetes Blog Day on November 9, 2010 (though I didn't finish it until the 10th), when the prompt was, "Six Things I Want You To Know About Diabetes." I think these are still things that I want everyone to know. So bear with this slightly-tweaked old post, below:

"So yesterday was World Diabetes Blog day, much of which I read (while forgetting to change my pump cartridge, oh the irony), but I failed to finish a blog on time, mostly because I found out about it the day of and I wasn’t home between 8:30am and 10pm. This is characteristic of me being late to the party when it comes to diabetes social media and support. However, I hope you’ll indulge my late discussion of the topic, “six things I want you to know about diabetes,” even though, if you’ve been reading D-blogs over the past day, I cover a lot of familiar ground. We’re all different, but many of the issues are very similar. There are many things I could talk about, but this is what comes to mind.

1. Diabetes is expensive. The financial part is the most tangible. The Ontario government is helping me by providing a $7,000 insulin pump free and $2400 a year for supplies. That barely covers insulin cartridges and infusion sets, and it wouldn’t cover them if I wasn’t reusing each cartridge once (the rep okayed it) and hadn’t finagled a 15% discount out of the rep because I have no outside insurance. It doesn’t cover insulin, really expensive testing strips, lancets, alcohol wipes, sharps containers, among other things. Many people reuse what they can or go without because it’s just so much. My first experience with diabetes and the US healthcare system, which would not have provided me with the thousands of dollars worth of stuff I’m getting now without insurance, was watching an older man argue, in tears, with a woman behind the counter at a government office, because he couldn’t afford testing strips and insulin and was afraid he was going to die. Without insurance, I don’t actually have a real choice of what country in which I can live. Even in Canada, the only way I can ensure I get insulin for free is by living in a hospital, which makes no financial sense. Canada doesn’t want to open a can of worms by making even lifesaving prescriptions part of their universal coverage, but there’s talk about it in Ontario and I’m hoping it’s coming. I don’t even know if the US will have basic universal healthcare in my lifetime. There are compassionate care programs, but it still sucks.

2. Mentally and physically, the costs are also high. I am always thinking about this, even if I forget to do something crucial, like change out my damn cartridge. I forget because there are so many things to do, all the time, figuring, injecting, hoping, being totally frustrated when the time of day or month, weather, amount of exercise, type of food, stress level, mood, incorrect nutrition information (Tim Hortons website and this carb book I have list their bagel with a 16 carb difference, which is an extra slice of bread) or something I can’t even think of that I’m experiencing screws up my calculations, which have to be extensively precise and now include carb counting, blood glucose level, insulin sensitivity factor (changes over the course of the day), insulin still in my system, and whatnot. Luckily my meter calculates some of this for me, but it’s an inexact science at best. I never thought that math would be such a large part of my life, but it is. So it’s not just “match carbs to insulin and you’ll be fine.” I could give myself the same amount of insulin for the same food two days in a row, and it could look like I just rolled the dice of chance, with two totally different numbers. Snake eyes.

When the anti-healthcare brigade decides to call me a lazy insurance sponge, it makes me want to cry. Because this is a full-time job, substituting for a malfunctioning organ. And whenever I get it wrong, I feel physically terrible, whether I’m thirsty and bone-tired with scratchy eyes, or shaking and sweating, also bone-tired, if I don’t just pass out and possibly not wake up. Lows are scarier than highs, in many ways, but for a long period of time I craved them because I could eat sugar without being judged, and I could balance out the high blood sugars on my A1c. I know there are a lot of perfectionists here, like me. How would you feel if the only thing you couldn’t get a perfect score for was the one thing your life depended on? And there was little you could do to study for tests you failed arbitrarily? Most of us would drop that course. I can’t.

3. So here’s the thing. Shaming doesn’t work, except to make us feel bad, and most of it is totally incorrect. Most people can’t tell between Type 1 and Type 2. In a way, this shouldn’t matter except to understand how we treat ourselves is different. In reality, it matters a lot to the self-esteem of many, because Type 2 Diabetes has been unfairly stigmatized as the disease of fat lazy couch potatoes. Yes, being overweight and inactive can promote insulin resistance, and eventually Type 2, if you are genetically predisposed to it. But Type 2, as Type 1, is mostly a genetic lottery. Type 1, which I have, is an autoimmune disorder. I’m fairly sure I was always a Type 1 who was caught early, thanks to the diagnosis of my cousin. I was totally asymptomatic, the doctor almost refused to test me, and I had a fasting blood sugar of 27. (It’s supposed to be 4-6.) Neither pills nor diet worked, and my pancreas did eventually implode. And I have a zillion other autoimmune problems thanks to my overactive system that freaks out and kills anything in its path, healthy or not, much like the Killbots from Futurama (“did someone say Howitzer!?” Blam blam blam).

However, I got shame two ways because of this. First, there was the “shame” of thinking I was Type 2, that I “brought this on myself” as a 12-year-old. Misinformation and the media, always shaming. Then, there was the “shame” that diet and pills didn’t work, and that I had to go on insulin. Insulin is NOT a failure, it’s just what I need, because I am a Type 1 and I don’t have my own. But I felt like I was going down the levels of diabetic hell, becoming a worse person, a failure, at each step. Because of how it’s portrayed. However, in a sick way, I was glad when the Type 1 manifested itself. Because suddenly it wasn’t “my fault”. Part of my inability to accept my diabetes as a part of myself, psychologically, until basically a few weeks ago (Dx 1997) was this shame cycle, particularly the shame of the term “double diabetes” – that is, I have Type 1 with the insulin resistance of Type 2, which makes everything much worse. Though in my case and others like mine blur the lines a bit, please try not to confuse Type 1 and Type 2, and, more importantly, don’t shame either of us. Please. Don’t comment on my meter numbers unless I’m cheering. Don’t food-shame. I need to follow healthy eating guidelines as much as you do, not much more. If I want a piece of cake, or a glass of wine, I’m having one. I don’t eat or drink some things, like regular pop, because they’re not worth it to me (or even taste good anymore), but I just have to take externally what you produce internally. Sugar-free doesn’t mean it’s better for me, when you look at carbs and other properties (for example, laxative effect, really?). I felt better once I started eating more real food, that had sugar, and took insulin for it, rather than gross (in 1997, really gross) sugar-free chocolate. No, I shouldn’t eat an entire box of cookies, but you shouldn’t either. Let me eat cake.

4. That being said, insulin is the best thing I’ve got, but it’s not a cure. It is a lifelong therapy. There is no cure. Herb #17 isn’t a cure. The raw food diet isn’t a cure. Exercise is not a cure. I can’t exercise and diet this away. With Type 1, if I don’t take insulin, I can eat NOTHING and my sugars will still rise of their own accord. You can’t eat less than nothing. If I stop taking insulin, I will die. Maybe not for a while, but I will (however, I can go without it for a bit, so don’t freak out if I take my pump off to shower or something. It’s not like a medical show where the patient needs it immediately.) Much like diamonds, diabetes is forever. I don’t want to minimize horrible diseases such as cancer and the trauma and death they cause. But the head of the artificial pancreas project said something that struck me. He said that a cancer, while the worst thing ever during treatment and having the possibility of being fatal, can be cured. You can be cancer-free. You can never have to deal with cancer again. You can be a cancer survivor. You can’t be a diabetes survivor. You can live with it, and you can live with it the best you can. But it will be with you all your life, and it will get you in the end.

5. Even if you think you don’t need support, you probably do; the right kind of support is amazing, the wrong kind is really damaging. Again, I was Dx 1997. I went to my first official meeting for diabetics…last Wednesday. I’m not a support group type, at least I wasn’t, particularly in my teen years. I’m a perfectionist, which I determined meant I could only be good enough if I handled all of this myself. I didn’t want to inconvenience anyone who wasn’t diabetic by talking to them about it, and I couldn’t stand the idea of some sort of “my name is Ilana Lucas and I’m a diabetic” sort of touchy-feely group for losers who couldn’t deal with it themselves. Diabetics were losers, and I didn’t want to identify with losers, even if, again, they had only lost in the sense of genetics. I couldn’t make diabetes a part of me without letting it consume me. What changed my life? This is stupid, but here it is: social media. There’s a whole world out there with interesting people who happen to also be diabetic and talk about it. It’s a new world to me, and I’m grateful for it. I’ve gone from being a closed book about this to starting a separate Twitter feed about my diabetes so I could talk to other people (but it was still a separate part of me) to essentially incorporating it into my actual life account, and therefore, life. I like support. I’m super happy to answer questions as long as the non-diabetic asker doesn’t assume they know more about my condition than I do. This includes super-smart doctors who have said “I don’t understand why you can’t just do this” – no, you don’t understand, because you’ve never had to do it. This also includes “Well I vaguely know person x who has diabetes and she dieted it away/lost her feet/tried colour therapy (I’m not kidding, someone went on a diabetes community to tell us that the colour yellow would help us).” Social media is great, but it’s also awful for the spammers who like to “follow” me and sell me on misinformation and cures that enrage me. Read the comments on a lot of blogs and posts and it’s people selling, selling non-cures that can actually kill, and I’m scared people try these things, because this can be a claustrophobic disease to live with and the next breakthrough is always “five years away,” no matter how much time has passed. Anyway, I’m a researcher and a dramaturg. Talking about the stuff I know? It’s what I do. But I don’t want to be a bore, still, so you can tell me to change topics.

6. But finally? I have a sense of humour about this. Please don’t think we’re humourless grumps. The only jokes about diabetes I hate are the ones that are completely misinformed and portray us as stereotypes – so, the kind of jokes everyone hates about their group. To get along with this thing, I have to find it kind of funny, because it’s so ridiculous. I started my morning with my pump falling out of my pants, hitting the floor, and ripping the infusion set out of my body. I could have freaked out about it, but really, I just had to laugh. You really just have to laugh."

-Ilana

The Shakesbetes Rep Company

Shakespeare is famous for astutely writing about the human condition, but I think it would be even more awesome had he written about the diabetic condition. One Wednesday's DSMA introduced the idea of Shakesbetes (the writer, not the hypoglycemic reaction). Since then, I've been thinking about various plays for the Shakesbetes Rep Company, exploring what a comedy or tragedy this condition can be. So in honour (or in dishonour) of Shakespeare's birthday today, here's a partial list:

‘Betes Andronicus: Tamora, upon hearing that the pie she has consumed was made from his own children, freaks out because she now has no idea of the pie’s carb count.

A Midsummer Night’s Low: four young people in love bitchily stumble around making poor choices as if drunk, for no apparent reason.

Hancet: Suspicious of the circumstances surrounding his father’s death, a young man bluntly needles everyone around him, running several of them through.

As You Spike It: Rosalind is a pizza, but she dresses up as salad to get closer to Orlando. He can’t figure out why she makes him feel so funny inside.

Twelfth Night Correction: A mother tests the BGs of her twin T1 children, Viola and Sebastian, twelve times over the course of the time she should be sleeping. After mistaking their readings for one another’s, she gives up and throws herself into the sea.

The Winter’s Fail: Furious at his meter’s inability to work in cold weather, Leontes orders it to be destroyed, but comes to repent his jealous decision. Features the famous stage direction: Exit, pursued by a carb.

Oh Hell No: Jealousy over who has the lower A1c grows toxic, and results in strangulation.

King Liver: When a ruling organ goes to divide his inheritance, he asks each hormone how much she loves him. Insulin says, “I love you according to my bond, which makes you more permeable to glucose and activates enzyme systems, helping you uptake and properly use sugar.” He disinherits her.

The Error Fives of Windsor: A madcap blood glucose sex comedy, wherein Falstaff fails to get either the girl or a correct reading.

The Merchant of Medicine: A pharmaceutical company demands its pound of flesh when Antonio cannot produce his insurance policy. (The Merchant of Menace?)

Much Ado About Nothing: Is Beatrice having complications, is she Real People Sick, or is she just tired? Whatever it is, Benedick is going to get an earful.

The Comedy of Errors: When a pair of twins, one a T1 and one a T2 diabetic, are mistaken for each other, “hilarious” misconceptions and judgments ensue.

Love’s Labour’s Lost in Measure for Measure: An A1c just won’t come down, no matter how much work our protagonist puts in to a regimen.

Something tells me funding for the Shakesbetes Rep Company may be limited. But that’s okay. All’s well that ends well.

-Ilana

Diabetes and the Narrative Impulse (Harry Potter vs. Owen Wilson)

When a person is diagnosed with diabetes, one of the (unhelpful) responses we often get is “well, at least it’s not cancer.” Why do people focus on this particular comparison, minimizing the impact of diabetes? In the theatre, one of the things I’m fascinated by is the concept of the illness narrative – whether it be AIDS (The Normal Heart, Angels in America), Cancer (Wit is probably the most famous) or mental illness (Proof, King Lear, 4.48 Psychosis, too many to count), among others. These narratives show us how people and society deal with the concept and reality of illness.

The comparison between cancer and diabetes intrigues me, because cancer is far more traditional from a narrative standpoint, and perhaps that’s why it gets so much attention and sympathy (and is popular in theatre, novels, etc.) – there’s a bad guy, your life is on the line, you fight him and either lose bravely as a martyr or emerge victorious as a hero. The plot is traditional and as potentially satisfying as a narrative can be.

Diabetes is a non-traditional and frustrating illness narrative because it is chronic. At least, with cancer, you can WIN. There is no winning in diabetes. There is doing better, and doing worse. And it’s a fatalistic narrative that you have to fight against mentally, because there is an almost 100% chance that, no matter how long you live, the “bad guy” will quietly win – diabetes will at least be partially if not fully responsible for your death. People with chronic conditions have to adapt to the nontraditional illness narrative, the one where illness becomes static and isn’t filtered through a satisfying narrative goal. People thrive on creating stories for and about themselves. That’s why stories are there; they shape our lives, and how we understand ourselves. And that’s why there is so much diabetes burnout- the “goal” isn’t victory, it’s daily survival. It's also why it's harder to fundraise for chronic conditions, unless you show pictures of adorable children. A vital community is necessary when it comes to diabetes – it must be continuous, always there, flowing like the condition itself. It’s why people blog – they are creating and sharing their stories.

So with diabetes, there is no large, exciting battle, only many everyday ones. It’s not Harry Potter. It’s not Spider-Man, Transformers, or The A-Team.

It’s Office Space, and your diabetes is that annoying boss, Bill Lumbergh, and man, do you ever have some TPS reports to file. And just like you can do the same thing with diabetes day after day and totally different things happen, today you need a cover for your TPS reports and you didn’t realize it. Didn’t you get the memo?

Yes, diabetes isn’t Frodo vs. Sauron. It’s more like a terrible buddy-cop-romantic comedy movie starring a bumbling Owen Wilson.

Stick with me on this one.

So Owen Wilson, force rookie, and his older, beleaguered partner, let’s say Tom Hanks, or maybe Denzel Washington, are patrolling your insides. The autoimmune team. And Owen Wilson is your best friend, but he’s a hothead and HE’S A COP WHO DOESN’T PLAY BY THE RULES! Yeah, one of those. He’s going straight for the top, but then he takes too many chances and accidentally shoots your innocent pancreas, who is probably played by Ben Stiller or something. And there’s a total mess and DenzelTom says, “This is what happens when you don’t PLAY BY THE RULES.”

Anyway Owen gets kicked off the force and he feels really guilty about it, so he decides to move in with you to make things right. He’s always hanging around. It’s like You, Me and Dupree, or something (disclaimer: I have never seen You, Me, and Dupree). And you just can’t make him move out because you feel guilt for some reason; maybe it’s that Wilson charm, maybe you feel partially responsible, maybe he just keeps on coming up with more and more convoluted reasons to stay. So you have to deal with him clogging your sink and never cleaning his stuff and breaking your lamps from time to time. And that’s the narrative. Owen Wilson screwed up on the job, he’s moved in with you, and one day his comical antics will inevitably burn down your house. Cancer is Lord Voldemort. But Harry (spoilers) beats him. You’re stuck with Bill Lumbergh, and you’re stuck with Owen Wilson.

-Ilana

A Breakup Song

Once in a while, I ask myself, “Self, how do I launch you into international music fame?” Successful musicians capture the attention of their audience by singing about relatable and universal themes. Adele, I’m told, did spectacularly well with a heart-wrenching album full of break-up songs. I was thinking about this. Now, my audience here is primarily diabetics and those who love them. So what better album to drop than a bunch of old-fashioned pancreas break-up songs?

My first single off the album is “The Pancreas I Used To Know,” with very sincere apologies to Gotye’s “Somebody That I Used To Know” (original song here, if you’re one of the two people who haven’t heard it- see what I mean, breakup songs = international fame!)

Now and then I think of when we were together

You self-corrected for each piece of cake or pie

Told myself I’d always be this free

And you’d be a functioning part of me

Now high blood glucose causes aches that might dismember

You can get addicted to a functioning endocrine system

It was a thing I didn’t think I had to attend

But with a random fasting test

I knew you had been laid to rest

And I’ll admit that I freaked out when we were over

But you didn’t have to cut me off

Crap out like I just malfunctioned and then you were nothing

I didn’t ask for constant love

But right now you’re trying to kill me and that’s kind of tough

You didn’t have to stoop so low

Now my glucose is so high you really changed my numbers

I really don’t need that, oh

Swearing at that pancreas I used to know

Think about that time when my immune system screwed me over

Other people thinking it could only be what I had done (that poor Type 1)

No, I don’t want to live this way

Poking at my body every day

Why did you have to up and go?

I can’t help but feel betrayal from this pancreas I used to know

But you didn’t have to cut me off

Crap out like I just malfunctioned and then you were nothing

I didn’t ask for constant love

But right now you’re trying to kill me and that’s kind of tough

You didn’t have to stoop so low

Now my glucose is so high you really changed my numbers

I really don’t need that, oh

Swearing at that pancreas I used to know

Swearing at that pancreas I used to know

…I think I’m going to have to work a bit harder for international fame. Maybe Blünt Lancet will sign me?

-Ilana

Welcome to Diaturgy!

Dear World,

I have this dream. Well, I mean, nightmare. I’m standing at the gates to the afterlife and the God of Diabetes is judging me. The God of Diabetes is always portrayed by Wilfred Brimley. Come on, you know who I mean, you’ve seen the commercials. Guy with a walrus mustache, “If you have…diabeetus.” Wilfred is judging my final fate. In front of him is a scale, with a blood glucose meter on it. It’s a clear callback, my dramaturg brain notes, to the Ancient Egyptian myth of judgment, where your heart is weighed against a feather. If it’s lighter or as light, you go to heaven. If it’s heavier, your heart gets eaten by crocodiles. This is either lodged in my brain through history classes or through Sesame Street’s seminal treatise, “Don’t Eat the Pictures,” I’m not sure which. In this test, if my BG is 4-6 (mmol/l; it's a metric scale), I get into heaven. 6-8 and I get into heaven but I have to pass the written. I test and there’s a strip error. I give Wilfred a buck to buy another strip and test again. The result is in. It’s 8.5. Fuck.

“Diabeetus,” intones God Brimley, sadly. It’s all he says. Crocodile time.

Then I wake up.

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It has come to my attention that introductions are hard, particularly trying to introduce something you've been thinking about for fifteen years, when Blogger was but a twinkle in a developer's eye. My name is Ilana Lucas. I am a Type 1 Diabetic, and I have been mulling this idea over and over in my head since I was diagnosed hours before my best friend's 13th birthday party (I was 12) in 1997. My diagnosis story is atypical. My mother had insisted that I get tested because my first cousin had recently been diagnosed with classic symptoms at the tender age of four, and, well, who's the comedian who, on the subject of a disease, says "it doesn't run in my family; it gallops"? That's the case for my family and various types of diabetes (it's nowhere near as prevalent in my family as many, but it still seems to happen often enough). The doctor initially refused but humoured my mother. My fasting test came back at 27 (486 for the non-metric; whatever scale, it was bad).

When I was diagnosed, I wasn't put on insulin immediately. I have no idea why. The doctors seemed to think diet would help. It didn't. They thought metformin would help. It didn't, though it helped nauseate me constantly. It didn't help to the point where I didn't know whether it helped or not, since I hated my numbers that I could never get right, I stopped testing.

At 15, my pancreas finally gave up the ghost and I was mercifully put on insulin. My endocrinologist tells me I'm a Type 1. I'm beginning to wonder if I had a case of LADA, even though I was young. The consensus seems to be that I was a Type 1 caught very early thanks to my mother, but I've never been able to shake the worry/guilt that the (100% undeserved by anyone) stigma of Type 2 applies to me. I don't know how to define myself. It bugs me.

I didn't take care of myself for a long time. I had a fatalistic attitude toward my condition. I'm a perfectionist with an obnoxious resume: top of high school class, Princeton grad cum laude, Columbia grad school grad cum laude. I tried to be the perfect child and I never rebelled. Except for this. Diabetes was my rebellion. It was the only test I couldn't be perfect at so I ignored it. Unfortunately, it was the test my life depended on.

It's only been in the past couple of years that I've shaped up and accepted myself and what I have to do, though I'm still not perfect. I attribute this to a combination of a wise voice from grad school, and my introduction to DSMA, Diabetes Social Media Advocacy. It's not an exaggeration, though it sounds silly, to say that the other diabetics I have met through social media have changed my life. I went from MDI to a pump (Animas Ping) in November 2010, and brought my A1c's into the best shape they've ever been by a long shot, though I recognize I have a long way to go.

Other things about me: I'm currently a contract professor of English; I'm engaged to a wonderful guy I met in undergrad, and I sing in a choir and play rock handbells with five other rockin' chicks in our group, Pavlov's Dogs. I blog about theatre and music here.

Why Diaturgy? My great love, and educational background, is in a field called dramaturgy. A dramaturg is the equivalent of a theatrical consultant; she or he, through a combination of research, teaching, writing, mediation, conversation, and working with playwrights, directors, and actors, is responsible for ensuring the most powerful and accurate communication of the theatrical event possible. A dramaturg bonds everything together, functioning as a bridge between audience and production, and as a bridge between various parts of the production. The key word for a dramaturg is communication. In this blog, I hope to communicate; to dramaturg my diabetes. I hope to be a bridge between myself and other diabetics, myself and non-diabetics, and, I hope, between others who might want to enter into the conversation. I hope to do this with thought and passion.

But first, I intend to tell you why diabetes is like a bad buddy cop movie starring Owen Wilson, and I intend to share some of the silliest song parodies imaginable. Because I'm like that.

Thanks for reading!

-Ilana