Sunday, May 20, 2012

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 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.


Saturday, May 19, 2012

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.

Friday, May 18, 2012

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.


Thursday, May 17, 2012

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.


Wednesday, May 16, 2012

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.)


Tuesday, May 15, 2012

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.


Monday, May 14, 2012

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; 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

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


Wednesday, May 9, 2012

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 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.


Monday, May 7, 2012

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.


Tuesday, May 1, 2012

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."