Saturday, December 21, 2013

Happy Birthday/Indiana Lucas and the Insulin Vial of Doom

Wednesday was my 29th birthday; not as momentous as 30, but certainly a time to think about what a good run my twenties have been. I celebrated in style; on the previous Sunday, I had a lovely birthday party at a bar; I had it catered with Cuban food, an awesome friend made a (not-sugar-free) cake, and there was much talking, joking, and playing of Cards Against Humanity (not Cards Against Diabetes, sadly). On my actual birthday, I was in Florida; I'd flown in the night before, and before going to visit my fiance's family, we decided to spend that day at Disney World. I had a wonderful time. We timed everything at the Magic Kingdom so we never had to wait too long for anything, went on all the rides we wanted to, and even saw a bit of performance art with a teenager dressed as the Mad Hatter, pretend-sipping from an oversized teacup while riding in a teacup at the Mad Tea Party.

Relaxing in my fiance's arms as the fireworks display exploded above us, I reflected on the fact that diabetes had practically given me a reprieve all day. It might as well have been called the Magic Blood Sugar Kingdom, because my readings weren't higher than 5.7 all day. I had two minor lows from walking around so much, but they occurred when we were about to eat, anyway. I managed to cram all necessary supplies into a tiny purse, and nothing malfunctioned. Happy birthday to me!

Tonight, the D-gods decided to get me back a bit. I present to you the story of: Indiana Lucas and the Insulin Vial of Doom! (I hope this is not a trilogy.)

A few hours ago, knowing I was going to be away from the house for many hours tomorrow, I pulled an insulin vial out of the package so that I would take an extra (I still have insulin pen vials even though I use a pump...I don't know why). Slipping out of my hands, it fell on the tile of the kitchen, and I winced as I heard the "smack." I picked it up, but was relieved, as it looked totally fine. "Guess it didn't fall from too high," I told myself. "The birthday luck holds." I put it in the removable card/coin pouch in my purse.

I stayed up later than planned, which was probably a good thing, as my pump ran out of insulin, and it would have woken me up to change it out anyway. I went through the coin purse to get the vial, and found a second one, nearly full. "Huh," I thought. "Guess I didn't need to take the second one out after all." Then my fingers found the second vial, which...gave slightly at the touch. This was worrisome. I picked it up, and a small piece fell off the bottom. Not good. Okay, I was going to use this vial instead to fill the cartridge. I put the needle on to the cartridge and, as is my wont, used the needle cover to press on the orange stopper part of the vial to fill the cartridge, as that is generally easier. The cartridge plunger didn't move. Instead, insulin started gushing out of the bottom (though currently the top, as it was upside-down) of the vial. Indiana Lucas had set off the first booby trap in the temple. This was going to be no walk in the park.

I had brought a lot of extra insulin, as I am far from home and will be for two weeks. Seeing insulin start to seep over the sides of the vial and drip, though, made me panic. This is expensive, life-giving liquid. I had to save it. I had to keep the vial upside-down at the same time. What to do? The cartridge couldn't support the weight of the vial and keep level. I kept a hand on it, while searching through the coin purse. I found what I was looking for: the auxiliary syringe I keep just in case something goes wrong (like right now). I picked it up, and with one hand, tried to both hold it and get the cap off, while holding the vial contraption level with my other hand. I was an action hero. I...I...

I sank the needle directly into my thumb.

Everyone else was asleep, or I would have howled in pain. But this was Indiana Lucas time, and Indiana Jones doesn't get hit by the arrows. So, instead, one hand still steadying the broken vial, I eased the syringe out, and it repaid me by scratching across some of the rest of the digit. But I kept my cool.

I then used the syringe to suck up the gushing insulin and insert it into the partially-empty other vial I already had out (good luck!)

The insulin started bubbling through the base of the damaged vial again (bad luck!)

My thumb started dripping blood (worse luck!)

With the vial still upright in my hand, I marched into the kitchen, deftly grabbed a paper towel, and wrapped it around my thumb, partly with my hand, partly with my teeth. I performed the insulin-hoovering manoeuvre again. Then, for more efficiency, I switched to taking insulin out from the "correct" end as quickly as possible. I could not let any of this stuff drip onto the carpet. Switching the two vials as quickly as possible, I felt like Indiana Jones replacing the idol with a weight of equal value. It was going to work! It was going to...
Uh oh.

The other vial was full. The plunger of the other vial was slowly starting to work its way out of the tube. There was nowhere else for the insulin to go. Was I about to lose TWO vials of insulin? The giant ball of rock was released, and was picking up speed behind Indiana Lucas, as she struggled to find a way out. There was too much air in the saviour vial. I could remove it with the syringe. The syringe was full of insulin. Insulin that had nowhere to go. My pump was buzzing like crazy, adding to the chaos, because of course I hadn't had time to put the filled cartridge back into it.

Holding EVERYTHING upright, now, I had a flash of insight. I could keep the rest in a cartridge. I found an old cartridge to be a temporary vessel. I was about to use it when I noticed some odd sediment. No, bad idea. Tossing the old cartridge into the trash, I rushed to my bag and found a new cartridge.  I just needed to transfer the insulin from the syringe into the cartridge, and then I could take the air out of the vial, and then...

Wait, how do I get the insulin from the syringe to the cartridge? Can I push it in through the top? Tried a bit. Didn't look so great. Think, Lucas, think. Okay. Use the cartridge to take insulin out of the vial. Inject the stuff in the syringe into the vial. Take out the air with the now-empty syringe. Plunger equalized. Then, finally, take out the very last dregs of the broken vial, into the cartridge. The puzzle was solved. The puzzle worked.

As I siphoned the last of the insulin out of the broken vial - I don't know if it was the pressure of my hand keeping it upright, or the sudden lack of contents, or what - a large piece suddenly broke off. The vial lost what structural integrity it had. I stared at the crumbling vessel, realizing I had only lost 5, 10 units of insulin, tops, and how much worse it could have been. Indiana Lucas had run just fast enough to dodge the ball of rock, as it tumbled out of sight. Holding her treasure aloft, she nonchalantly stepped into the sunshine, to deal with the jungle as it came.

-Ilana

Wednesday, December 4, 2013

Cards Against Diabetes

Cards Against Humanity is kind of an awesome game. If you've heard of Apples To Apples, it bills itself as "Apples to Apples for horrible people." If not, here is the premise: there are black and white cards. The black cards involve one, two or three blanks to fill in. The white cards are things to fill in the blanks. Play rotates so that everyone playing gets to blind-judge the white-card submissions (minus theirs) in order. The usual trick to CAH is to be as offensive as humanly possible, or at least as clever or possibly unintentionally accurate or poignant as possible, depending on who is selecting the winning card.

As offensive as possible, you say? What's more offensive than having to deal with diabetes?

I propose a game of Cards Against Diabetes (though perhaps Diabetes Against Humanity would be more accurate). It would be awesome. So, so awesome. What better way to deal with this crap than to laugh at it?

I give you: some starter cards for Cards Against Diabetes. Note: this game is supposed to be offensive, so if you are very sensitive, please don't read the cards! You've been warned (although they could be worse, honestly). For everyone who wants to play: please suggest more cards! Does this call for a D-Meetup, or what?  I hope you enjoy! :)

Some black cards, to get you started

Some white cards, to get you playing.   



Sunday, November 24, 2013

Gym Date

Woke up this morning with a 2.9 low blood sugar, low enough that I couldn't feel part of my face. Had a gym date. Most days I'd go back to sleep, exhausted. I was exhausted. I hadn't slept, thinking about my insecurities in preparation for joining the gym; thinking about the lows I'd have to fight, the way I would feel clumsy, the way I probably wouldn't lose the weight I'm desperate to. Last night I stared up through the skylight in my bedroom, up toward one fantastically bright object. A planet, staring back at me; a heavenly body as far away from me as I feel from my own. I could have gone back to bed. But today?

Screw you, body, I'm not going to let you beat me.

Stuffed yogurt-covered cranberries in my face, leveled out a bit and was out the door. Made it to the bizarrely named Body Pump and got through the hour; first time in the class, so of course there's a learning curve and I'm at the bottom of it. Swallowed my pride and did the starter weights. Stuck it out even when I felt I had no idea what I was doing.

Screw you, body, I'm not going to let you beat me.

Then did an hour of "Body Flow," an odd yoga amalgam, but faster. Got progressively more frustrated at the increasing weakness and remaining pain in my still-crippled elbow half made of metal, until I heard an audible pop. Pulled it together and did NOT curse audibly in yoga class. Namaste. Finished the class even after my arm gave way and sent me crashing to the ground with a snap and a twinge. I got back up, trying to meditate through tears. My meditation was a little unorthodox:

Screw you, body, I'm not going to let you beat me. 

Class over. My commitment to the day was done. I could have gone home immediately with my tail between my legs. But I was so frustrated with my crippled self that I felt I needed to keep moving, keep pushing. I decided to run it out. So after two hour-long classes, I ran two miles on the elliptical, one in 8:55, which might very well be a (admittedly still crappy) personal best. I walked out of the gym with my head held high.

My arm still hurts, but...

Screw you, body, because today I beat YOU.

I have to do it again tomorrow.

-Ilana

Monday, August 12, 2013

The Diabetes Phantom Tollbooth

As a child, my favorite book was The Phantom Tollbooth, by Norton Juster, with pictures by Jules Feiffer; much like Anna Quindlen of the New York Times opines, I thought it was "the best book ever." Shockingly, it was one of very few books that I discovered by seeing the movie adaptation first; I accidentally came across it during a visit to Florida, and my parents were deprived of much of an afternoon at the beach as I refused to stop watching. The story features a young boy named Milo, who is always bored, and is never satisfied with wherever he is or whatever he's doing. One day, a box arrives, "for Milo, who has plenty of time," and Milo grudgingly assembles a cardboard tollbooth with some mysterious coins and a child-sized toy car. Once through the tollbooth, he winds up on a quest through a series of magical lands that teach him the value of letters, words, numbers, senses, sights, sounds and the magic that knowledge unlocks. The book is filled with wordplay and puns, and it inspired me to pursue writing (an effect I'm sure it had on many curious children).

To me, the Phantom Tollbooth's many fantastic locations and wonderful puns can be applied just as easily to diabetes as to any other aspect of life. Here's a look through The Diabetes Phantom Tollbooth:

The book opens on you, newly diagnosed with diabetes. In a funk, depressed, you don't want to be where you are. A mystery package shows up, with a note: "TO YOU, WHO MAY THINK YOU NO LONGER HAVE TIME." When the Diabetes Tollbooth arrives, first, you have to put in your coins to get through. When we're talking about a toll, that's definitely a word I associate with diabetes.  Mental, physical and financial, you've got to pay these tolls to get through life.

Driving along the road, you first encounter The Doldrums: Here's where you get stuck early on in the book and in diabetes. It's grey, boring, and sad. No thinking is allowed, and certainly no laughing. You can get dangerously stuck in the Diabetes Doldrums, and it's difficult to get out; the Doldrums want you to stay, and they want to consume you. The Doldrums are a poor representation of life, but they're easy, if you don't care what happens to you. Everyone gets stuck once in a while, but the trick is to get out! Tock, the "watchdog" in the book, represents the wonderful Diabetes Online Community, with a CGM in his belly. Your best friend, he keeps you on track, telling you to think, imagine, and dream. It's hard work, but it moves you forward.

Next, you encounter The Whether Man: The Whether Man in the book knows that it's more important to know whether there will be weather than what the weather will be. He reinforces the need to always be prepared for any circumstance. He also knows there is no "wrong way" ahead; just your way, and my way, or someone else's way. Your diabetes may vary!

You finally come to your first city: Dictionopolis: Here we learn that words mean something, and impact the way we feel about our condition, our lives, and ourselves. Words like "brittle," "the bad kind," "noncompliant" are shown to be powerful negative weapons, that are combatted by words like "hope," "community," "friendship," "meet ups," and "ice cream." Here we also find that you can make it further by listening if you don't have all the info, rather than speaking, for like the Dictionopolis car, it "goes without saying." Often, people will be forced to eat their words, just as they do in Dictionopolis, so it is really important to think before one speaks, and to say something nice and tasty. Half-baked ideas are served for dessert, and just like real desserts, they're tasty and intriguing but dangerous if you eat too many, or take them too seriously. If you give your diabetes Short Shrift, you may be arrested by him (Officer Shrift), but you can be let out of jail if you display a Faintly Macabre sort of humour.

Your job in this world is much like Milo's: you have to find your sense of Harmony. Your sense of self has been split, with this diagnosis; the words you use to describe your world, your life, your self - they don't match what the numbers say. The numbers are out of whack and need constant correction. The words are fighting with the numbers as to which is more important, and have banished the princesses of Rhyme and Reason, who understand that words and numbers must be given equal importance. Nothing can be set right until Rhyme and Reason are returned. Armed with new words, you set out on your quest with Tock, the Humbug (how you sometimes feel) and the BEEtes (a giant bee that spells everything out for you).

Along the way, you meet a boy who grows to meet the ground, and you understand you must grow to meet your own set of challenges. You complain, and complain, but then you meet Dr. Dischord, who wants to cure the world of pleasant sounds so all you hear is noise, and you realize that constant complaining can purge your ears of the wonderful sounds of the world. Chroma the Great, who conducts the sunset, helps you to see the rich colour and texture diabetes can bring to your life, even though you must conduct your own symphony. Sometimes, like Milo, you get too ambitious and your colours go out of whack, or you seem to lose days at a time to this vicious disease, but with help you can get back on the conducting track and it might seem as if nothing had ever happened.

You get to the point where you're starting to take charge of this diabetes thing, when you encounter the Valley of Silence. It's so tempting to stay with the status quo and be quiet about what's "wrong" with you, but you see the injustice for all in remaining quiet about what needs to be done, and letting the message be controlled by a select few media narratives. You break the silence for good with activism, blogs, diabetes walks, petitions, videos. You spread the message of need and success far and wide.
The Dodecahedron

Now that you're interacting with other people and organizations, you suddenly find yourself on The Island of Conclusions. You get to this island by jumping; jumping to conclusions. Here we find many representatives of the media who deal with diabetes, and many other individuals who we deal with on a daily basis. As soon as a reporter assumes an older person has Type 2, or that there is only one type of diabetes, or that a thin person can't have Type 2, they would be off to the island. As soon as someone assumes you ate too much sugar as a child, that you brought it on yourself, could cure yourself with a diet, or that diabetes is easy to deal with and insulin is the same as a cure, they would go right to the island. We would love to actually send these people flying to the Island of Conclusions, where we wouldn't have to deal with them until we jumped to a few conclusions of our own (why isn't my BG coming down? Must be bad insulin. Couldn't be the pasta).

You finally find yourself in Digitopolis, the land of numbers; you try to figure out how all this math works and how it's going to be relevant to you living your life. While you figure out that averages don't tell the whole story and that you can run forever and not reach infinity (or, as we call it, perfection), you find some valuable tricks for your arsenal, guarded by the kindly Mathemagician (who may well have the face of your endo or your CDE).

The Dodecahedron shows you the many faces of diabetes, and you're introduced to Subtraction Stew - or, its real name, insulin. Insulin, like Subtraction Stew, is the only thing that can make you feel hungrier after you've eaten bowl after bowl of food. But, if you don't take it, Subtraction Stew takes on a whole new meaning: nothing you eat is actually absorbed into your system, and you can get thinner and thinner the more you eat; as the Humbug observes, it's like eating bowls of "FAMINE!" Eventually, you learn that, while they don't always add up like you would like them to, just like the words that don't always tell the right story, numbers are absolutely valuable tools that you must use to better live your life. Sometimes, they can even be fun, like when that pencil the Mathemagician uses as a wand pencils in a "no-hitter"!
The Mathemagician and King Azaz of Dictionopolis

The two sides of you have slowly agreed to work together, but you must make the final push; you have all the tools you need, but you and your few friends set out to find Rhyme and Reason alone. The Castle in the Air, that mythical-sounding place of true harmony, awaits. It can't be real; can it?

The scariest and most taxing part of the journey toward Rhyme and Reason is fighting your way through the steep, dark Mountains of Ignorance, which teem with demons of all types.

The Terrible Trivium is at the head of the demon pack. The Terrible Trivium gets in your way, big time. He is a minor demon, who puts you off taking care of yourself. He tells you to fritter away your time on other, meaningless tasks, because "in five years, there will be a cure." You must use your numbers to look at the real situation and pull yourself away from this seduction, reminding yourself that he has no real face.

Other demons chase you and you must fight them: the Demon of Insincerity, a false friend who sounds big and scary, but has no real power; the Overbearing Know-It-All (just listen to me; I know more about you than you know about yourself), the Threadbare Excuse (I was too busy to take care of myself), the Gelatinous Giant (just try to struggle out of these mountainous insurance claims! You must fight him with activism) and the snake-oil salesmen who form the twin Gorgons of Hate and Malice. It's a hard struggle, and it feels like a lifetime, but you make it to the stairs at the base of the castle, where you encounter one last gatekeeper: the Senses Taker.

The Senses Taker, who wants to take all your senses, is a frightening reality. Here is where you truly learn the power of your words, and yourself. You fear the loss of yourself, your identity; more tangibly, you are terrified of the loss of sight, of heart, of feeling in your limbs. But you fight back with love and laughter, because, in the end, nobody can take your vital sense of humour. Past the Senses Taker you go, and up those precarious steps with every fibre of your being and those friends by your side, and you open the door to the Castle in the Air.

And there Rhyme and Reason have been, waiting for you, all along.

You feel whole. Your journey is complete. You're a hero: adulation, banquets and all. Your A1c is the best it's ever been. Your endo wants to throw a ticker-tape parade. But then, you have to say goodbye, and really step out on your own, to a future that could be just as scary as this parable got at its worst.

You wake up. You're suddenly far away from Digitopolis and Dictionopolis. Tock, the Humbug, the BEEtes; they're not always with you. You've come so far and learned so much, and you recognize its worth. But you know there's so much left to be done, and learned, and experienced. Today, like yesterday was, and like tomorrow will be, is the first day of the rest of your diabetic life.

The tollbooth is gone, but you find a note left in its place, and in its own way, it means everything.

It says, "TO YOU, WHO NOW KNOW THE WAY."

Friday, August 2, 2013

Thanks! (and Mr. Sandman)

Before I actually post anything, I'd like to thank everyone for the amazingly positive response that my last post, Liar, has received. Stephen at Happy-Medium.Net wrote a post for D-Blog Check day that stressed the importance of writing, even if your words only touch one person (even if that person is yourself). This is a philosophy I wholeheartedly subscribe to, and I have been delighted every time I make a connection with even one person on my own little personal blog. Sometimes, though, it's even better to connect with over a thousand people! I have no idea what it's actually like to "go viral" (of course, writing about a chronic illness, I'd hate for it to actually "go viral"), but it's been a lot of fun to read all the comments, see my stats counter go berserk, and really, truly feel part of an enormous community for the past week.

Of course, this means that I'm paralyzed with fear about what to post next, now that people are actually looking at me!  I was going to post something about my current steps in healing from injury and moving forward with exercise, but I think I'll do that next time; last post was so serious that I think I'm going to go a bit lighter.

Music is a big part of my life, as well as theatre. I'm in a nerd-rock handbell group called Pavlov's Dogs, and a serious semiprofessional choir, the Amadeus Choir (you can listen to our performance of Bach's B-Minor Mass, recorded by the CBC (Canada's national public radio and TV broadcaster, here - I'm next to the pulpit in the photo, with a music stand because of my broken elbow at the time). Recently, though, I've also started singing with a five-woman a cappella group (no name yet), and it's been a lot of fun. The other day, we were practicing a version of the old standby, Mr. Sandman (original version, by The Chordettes, here). A couple members of our group do burlesque, so I wound up writing a burlesque version of the song on the way home (what else could Mr. Sandman bring?) that I won't post here. After I finished it, though, I thought: if Mr. Sandman could bring us dreams, a guy, and various other things, why couldn't he diversify, and, like a medical Santa Claus, bring me a new pancreas? This is all a long preamble to present my diabetes version of Mr. Sandman, performed by 1950s singing group the Diabeats:


Mr. Sandman, (bring me a) pancreas please
Let me deal with carbs with devilish ease
Remove this blight that tries to erase us
And keep me constantly in homeostasis
Sandman, I’m so alone
Can’t process sugar just on my own
You know test strips don’t grow on trees
Mr. Sandman, pancreas please

Mr. Sandman, pancreas please
The pump is nice, but control’s still a tease
You know I just want to stay alive
I’m sick of glucose tabs and Error Five
Sandman, give me a rest
This regimen's got me feeling oppressed
When I wake I want perfect A1cs
Mr. Sandman, pancreas please!

Mr. Sandman, pancreas please!
I'm like an engine, without any keys
When I am cured, I won’t be a boaster
I’ll just cheer when I step off that glucoaster
Sandman, a dream’s what you make
But nighttime lows kind of keep me awake
If you want me to catch some “Zs”...
Laugh at insurance companies...
Have time for more fun, less disease...
Mr. Sandman, pancreas please!
(And make sure it works this time!)

So, finally, happy Blue Friday, everyone! Here's my special Blue Friday dress:
Stylish *and* awareness-raising!

-Ilana
 

Thursday, July 25, 2013

Liar

BUFFY: Well, does it ever get easy?
GILES: You mean life?

BUFFY: Yeah. Does it get easy?

GILES: What do you want me to say.

BUFFY: Lie to me.

GILES: Yes. It's terribly simple. The good-guys are stalwart and true.  The bad-guys are easily distinguished by their pointy horns or black hats and we always defeat them and save the day. Nobody ever dies…and everybody lives happily ever after.

BUFFY: Liar.
(BTVS 2.07, "Lie To Me")

This is my entry in the July Diabetes Blog Carnival, on test strip accuracy:

Fill in the blank: "Test strip accuracy is important to me because_______"

Test strip accuracy is important to me because I need some truth in a sea of lies.

That sounds harsh, but lies, half-truths and mistakes are a constant of diabetic life.

The first lie many of us hear is at diagnosis. Not only are many people (like me) misdiagnosed, but the words that come after might be worse:

"Don't worry, there will be a cure in five years."

This is a pretty lie, a panacea, a lie born of optimism and kindness, but a lie nonetheless. So many of us have seen this prediction fail, over and over again. Most of us can't be perennial Charlie Browns, running at that football time and time again as it's pulled out from under our feet. This lie also encourages a dangerous pattern of thinking: "oh, I don't have to take care of myself too well. I just have to hold out for five years, then it will be like this never happened." We lie to ourselves. Liar.

The next lie, often delivered to terrified parents, is that we'll never be able to live successful, active, fulfilling lives. (Soon after diagnosis, I remember my mother being approached by the children's hospital's Children's Wish-type foundation, to potentially enroll me, as if I were terminally ill. She is not a person who gets angry, but she made an exception.) The Diabetes Online Community has proven again and again that this is untrue. In fact, many of us strive to disprove this lie by being our best selves, setting records, trying harder. This is wonderful, but it can be a dangerous burden; we don't just have to be as good, we feel we have to be better.

The sister lie is the opposite phrase: "You can live a normal life with diabetes." This one is always about inflection. "You can live a normal life with diabetes" as opposed to "You can live a normal life...with diabetes." The second one speaks more to the actual truth of the phrase. Yes, we can live successful, awesome lives, but always WITH diabetes. We can't forget we have it, or we run the risk of no longer remaining successful. We will always have more challenges than people who have bodies that maintain homeostasis on their own. To use the first inflection, to me, discounts the hard work and tremendous achievements we make just living our lives.

Then there are the media lies about diabetes, which show a true lack of knowledge about terminology, treatment, and the condition itself, the most pervasive ones being "Type 2 is the only type of diabetes" and "Type 2 is only caused by diet and exercise - that is, "Type 2s brought it on themselves." These lies lead to a fundamental misunderstanding of other people. They lead to blame, shame, and destroyed and splintered communities.

Products lie to us. The snake oil salesman says that a special drink will cure us, for five easy payments. The diet guru tells us that ancient grains or greens will remove the diabetes blues. We've been sold the colour yellow, cinnamon, prayer, amulets, elixirs and homeopathy for homeostasis, and none of them work, but you can spend all your money or die trying.

Companies and gadgets lie. We're told something makes diabetes "easy" or "painless." Diabetes is never easy, and never painless. We're told that getting a meter for free is a great sale born of company selflessness, and then we're trapped paying a dollar or more per strip. We're told we should do what's best for ourselves, but then we wind up fighting with insurance companies to afford it, or deity help us if we don't have insurance.  Food says "low carb" or "sugar-free," but isn't good for us. Nutritional information isn't always accurate, or has unrealistic serving sizes. Most of the time we're flying blind in the food and carb-counting department.

My insulin pump is the best piece of technology I've ever had, and I love its help in management, but it sometimes lies to me too. Do I really have an occlusion or not? Is the insulin spoiled? Does it say it's delivering fine, but the cannula is kinked so my sugars are suddenly in the 20s with no explanation? Does low battery mean I have two weeks, two days, two hours, or two minutes? I never know. Stop saying you're not primed, you little liar. You're primed. How much of the insulin did I actually get? Is the IoB a lie? Machines don't always know the truth.

We're told that, if we follow all the rules, that we shouldn't get complications. That our bodies should respond the same way to the same stimuli. Liar, liar, liar. If we're "compliant" and "good," we shouldn't have any unexplained highs or lows. That if we're "well-managed," realistically, "dead in bed" syndrome or DKA should never happen. The world looks a parent, relative, friend of a child, teen, adult with diabetes who is in the hospital or worse in the eye and says, "but she was well-managed...wasn't she?" Yes, but perfect management, or diabetes being fair, is a lie.

Most damningly, our own bodies lie to us. Sometimes, what my body wants is deeply intuitive and correct, but sometimes, it's not. Sometimes I feel low when my glucose levels are actually high. Sometimes I feel hungry due to a low, but my stomach is full. Sometimes, I need to eat but my levels are too high and I can't find it in myself to be hungry. Most of the time, my body says I want potato chips or chocolate, when I really need kale. Those who have hypoglycemia unawareness face the worst and most dangerous lie of all. My body is unreliable and doesn't respond consistently to any calculations. It's the worst betrayal when you are lying to yourself, or, more accurately, your self is lying to you.

So when I hear that test strips can be +/- 20% in accuracy (a 10 could be 12, or 8) and are often worse, it makes me sad. Because it's a lie, and we're already dealing with so much misinformation, so many lies, that we'd like something to be true. Something that, instead, takes the best of us, the life from us–blood is life–and turns it into another lie. Something that comes from the heart, which is supposed to (but often fails to) be the truest thing of all.

And that's why test strip accuracy is important to me.

-Ilana (If you’d like to participate in the DSMA blog carnival as well, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/)

Monday, July 22, 2013

Check-In Day

Today is "D-Blog Check-In Day," a multi-hyphenate event proposed by Christopher of A Consequence Of Hypoglycemia. Basically, the idea is that the Diabetes Online Community is just that: a community! The goal of being a community is interaction; we all contribute, sharing our voices, but it's nice to know we're not just shouting into the wind. Check-In Day asks one simple thing of its participants: if you read a D-blog today, comment! I haven't had the chance to read blogs today, but I'll try for the last couple of hours. I think it's a great idea. 

I haven't had time to blog much lately because life has been so eventful! If anyone here has seen my other blog, Rhymes With Dramaturg, you'll know I'm a theatre person, and I recently had a small dream come true when I was selected to be a judge for the Best of Fringe; basically, our Fringe Festival presents 150+ unjuried shows over twelve days in twelve mainspace venues, a kids' venue, "Alley Plays" at the Fringe Club downtown, and many unique "Bring Your Own" venues such as bars, fields, back-alleys, stores, laundromats, and anything else the creative teams can think of. Shows are between 45-90 minutes, with most being one hour. I love the anarchic, creative, artsy and often brilliant work that results, but my favourite thing about Fringe is, just like the DOC, the community aspect. You talk to so many new people, theatre fans like you. Word of mouth is the most important marketing tool at Fringe, because there's so much of it. You run into the same people (your theatre friends) over and over, and make new friends to see next time. I met wonderful people on the jury. Our job was to, between us, see all the shows and narrow them down to eight of the best to be re-mounted at an uptown theatre - currently happening, so if you're in Toronto and missed the Fringe, check these shows out!

I saw 44 shows (for free!) in 12 days as a Fringe VIP (plus another one at Best of Fringe 3 days later), liked almost all of them, and had an amazing time. We had meetings after the last show of the night that lasted hours, so I was NEVER home. My parents came home from a trip midway through the festival and I did not see my dad for a week. Thankfully, my fiance's 30th birthday (I can't believe it; we've been together since I was 19 and he was 21) was the last day of Fringe, when I was already fairly burnt out and could slow down with an awesome dinner at a fancy restaurant and then drinks with friends at a pub as near to the Fringe tent as possible, and I could go a short way to showing him how grateful I am at what a wonderful T3 he's been; truly, in sickness and in health!

My swanky VIP pass. I loved it so.

The thing about Fringe is that, since all the theatres are located in a similar area of downtown, and you are often running from one theatre to the next, there is a LOT of walking/running involved. Because you're seeing as many as seven shows in a day, there is not a lot of eating involved (not that much time in between)! To tie this to diabetes, this is both a fantastic and a terrible combination. Constant sweatbetes (and I mean SWEAT - it was bloody hot most of the time, when there wasn't a monsoon shutting down power and flooding the city) and not much fuel meant that I consumed every single glucose tab I had in my possession over 12 days, and I had many. Of course, to me, this is yet another reason to involve myself in as much theatre as possible; it lowers my blood sugar!

Finally, I'd like to mention a second D-Blog I've started (okay, I know; I don't need to splinter this any further). I love the "What Should We Call Me" meme, which is a headline situation posted, and a GIF underneath to illustrate that situation. So, if you like hilarious animated GIFs and diabetes, please check out What Should We Call Diabetes. You don't even have to comment!

Wednesday, June 26, 2013

Growing Up

Ten years ago today, I was sitting in the now-Toronto Centre for the Arts at my high school graduation. Unlike many people, I had a fantastic time in high school and couldn’t believe it was really over. My oldest friend Claire (we've had adventures since we were five) was sitting in front of me. She turned around and said, “This is it, Ilana. Are you ready to grow up?” The possibilities overwhelmed me, and I cried. 

Ten years later, I continued to have a fantastic time at Princeton and Columbia. I have two degrees with honours. I’ve worked for the tiniest theatres and the biggest theatre celebrities. I’ve made art and world premieres, and written some things I’m really proud of (but never enough). I’ve made friends with some of the coolest, most gifted people on the planet, and kept in touch with the equally cool and gifted people I had the privilege to meet in HS. I now work as a professor for a living, and I have learned to love the combination of academia and performance. I have had amazing opportunities to sing and play music, for radio, rock stars or just for fun. 

To make this vaguely relevant to this blog, in the past ten years, I have also come a really long way in conquering my diabetes demons. Here, I was ready to grow up. High school me would never have imagined that I'd be wearing a pump now (I was vehemently against it), testing several times a day, and that I'd have A1cs in the 7s, instead of I don't even want to remember what. High school me would be amazed that I was blogging about diabetes and that I have a social media presence regarding it, rather than either trying to hide it or trying to exploit D-crises to get peoples' attention, particularly attention from boys. (I blame the whole "men love a swooning girl" trope.) Seriously, ten years? That's two whole cures ago!

Speaking of things that happened today, ten years ago, I'm not sure I'd have guessed it would take a decade to "grow up" and strike down DOMA, but thank goodness for that. I also had no experience living in the US. Seven years there, even in liberal enclaves, opened my eyes to many realities (particularly those of the healthcare system).

In any case, I’m getting married next year to my great love, who I had no idea I’d meet within 15 months of graduating high school, and Claire will be a bridesmaid in my wedding. And if she asks me again, “Ilana, are you ready to grow up?” I don’t know what the answer will be. I still don’t think I’m ready. But I know I love my life right now, and I want to see what happens in the next ten years.

-Ilana

Tuesday, May 28, 2013

Cat Got Your Insulin Pump?

After the loss of our beloved 21-year-old cat Pumpkin at the start of this year, we were pretty heartbroken, and sure that we wouldn't love again for a good long time. Sometimes life has other plans, however; a pregnant feral cat was taken in by a co-worker, and soon some kittens needed homes. That's how Willow and Giles came into our lives (there might be a naming theme evident there) and they are absolutely adorable.

Meet Willow:


Meet Giles:

They are the best of friends, either snuggling with each other or play-fighting like crazy:


Okay, but why am I telling you this on a diabetes-related blog? Because sometimes kittens and diabetes don't mix. My original alternate title for this entire blog was "Cat Got Your Insulin Pump?" Cats, because they are weird, love the smell of insulin, and cats, especially kittens, love to play with anything that dangles. So, one day after dealing with frantically wrestling beasties, I started to feel unwell. My blood sugar reading seemed unreasonably high. I couldn't figure out the culprit, until I carefully examined my pump tubing.

It was covered in tiny, kitten-sized bite marks.


Cat got my insulin pump, indeed.

As a bonus image, here's me being interviewed about Toronto and multiculturalism on TV! It was a lot of fun. I'm excited about Princeton Reunions this weekend, so I'm wearing my school sweatshirt.

-Ilana

Sunday, May 19, 2013

Sharing the Love (D-Blog Week, Day 7)

Today's prompt: As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. 

I feel like this is both the easiest and hardest post to write; easiest, because there are so many amazing blogs and blog posts out there and I hardly have to do any of the work, and hardest because there are so many amazing blogs and blog posts out there, and how can I choose just a few?

The posts that really stood out to me this year are all, fittingly, for me, about memories and art.

Memories:

Kelly at Diabetesaliciousness - while I'm sure nobody needs to be introduced to this D-famous blog, I loved meeting Kelly at my very first D-Meetup, which was a huge breakthrough for me, and I love her story of a father who was willing to come to blows to protect his little girl's right to eat.

Mocha at PrettyPancreas - @PurdueMocha on Twitter - I've enjoyed our occasional conversations on Twitter, and all of the memories she recounts in this blog post are familiar ones to me (except the ketone stick one, because ironically, though I have a family member who was instrumental in developing this kind of technology, I never used them).

This incredibly moving piece at My Lazy Pancreas - one of the gems I discovered by clicking on any link I could find.

Finally, another blog I found from this week's blogroll, RainieAndMe - I love this one because it reminds me how lucky I've always been to have relatively advance diabetes technology at my fingertips (literally). That a disposable syringe was a precious gift once really opened my eyes to how far we've come in such a short time, even if we're all united in being told the cure was 5 years away from whenever we started.

Art:

I found a couple of pod poems or art pieces that I really loved; somehow, d-poetry seems more profound when written on the material we use to survive. Kudos to Death of a Pancreas and Melissa of Sweetly Voiced! Melissa (@sweetlyvoiced on Twitter) in particular has been super supportive of my work this week, and her words have raised my spirits greatly; it's always so nice to know that, when we blog, we're not shouting into the abyss.

Finally, this poem at T Minus Two struck a chord with me; a lovely way to structure a concept that resonates with most of us; how do we take the measure of ourselves?

I had a wonderful time with D-Blog Week this year and can't wait to do it again! Thanks to Karen for putting all of this together; truly, it's a movement with legs!

-Ilana


Saturday, May 18, 2013

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

Friday, May 17, 2013

The Chronic (D-Blog Week, Day 5)

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? 

Today’s D-Blog Week prompt is all about “Trading Places” – if we could have a different chronic disease, other than diabetes, what would we switch to, and why?

This prompt amused me, because when it comes to chronic diseases, they’ve never seemed to be an “either/or” proposition; rather, it seems like an “and” proposition. You have THIS chronic disease! And oh, also, you have THIS chronic disease! And THIS ONE TOO! You get a chronic disease, and you get a chronic disease, and if you look under your seat, EVERYONE in the audience gets a chronic disease!!


That’s why we have the term “co-morbidities,” because misery loves company.

In many ways, “choosing” a different chronic disease seems like minimizing someone’s pain; it’s almost mean. I know that if someone with another chronic illness said, “oh, I’d rather have Type 1 Diabetes; it seems easier than what I’ve got,” I might feel indignant and wounded. It’s that feeling when someone says, “at least you don’t have cancer.” I would never want to have cancer; it is an absolutely terrible scourge, and fuck it six ways from Sunday. However, the “at least” qualifier bothers me, because, again, it minimizes my condition’s impact on my life. I’ve written somewhat extensively on the cancer/diabetes dichotomy and why one is easier to receive sympathy and donations for; much of it has to do with, in my mind, the status of the chronic illness as an atypical, unpleasant and uninteresting progressive narration.

Cancer gives you a villain; it’s a life-or-death struggle, there are peaks, a climax, and the person is either hero or tragic victim at the end. Even with the idea of a possibly-ending remission, that’s just the set-up for the sequel; the “I Still Know What You Did Last Summer” villain popping up again.  Few chronic illnesses offer such a satisfying journey. This “cancer narrative,” while popular, is equally problematic for many people living with cancer, because it often casts them as victims when they don’t want to be. The concept that you “beat” or “lose” to cancer indicates a judgment on the person’s strength or strength of character; like a sport, a “loss” indicates that you just “didn’t want it enough,” which is maddeningly unfair and untrue.

That’s why I feel awkward and uncomfortable about choosing a disease instead of the one I have. My “grass is greener” is someone else’s “bĂȘte noir.”  However, if I had to pick, I would go for the one thing I have curiously never had: seasonal allergies (if that’s even considered a chronic illness).

My entire life, the one malady that has been curiously missing from my rap sheet is that of allergies. I am allergic to sulfa medication and nothing else. Twice, I have done a 60+-item scratch test at the dermatologist’s; twice, the only thing that has reacted has been the pure histamine control (so I really am skin reactive; I’m just allergic to nothing). Ironically, the one thing my skin is “allergic” to is being touched or scratched; I’m dermatographic (you can “write” on my skin and occasionally produce hives). So, just like everything else, my body isn’t rejecting outside stimuli; it’s rejecting myself, as usual. Stupid self-hate-filled body.

I realize that seasonal allergies can be a source of much consternation and misery (speaking to my cousin a few weekends ago confirms this). And I don’t want major food allergies; quite frankly, I’d rather be diabetic than be deathly allergic to some food that I had to avoid all restaurants for. But mild, recurring seasonal allergies that I can’t get rid of but goes away two weeks into spring? Sounds good to me.

This, of course, is cheating somewhat; I suppose an equal “chronic” illness should be something I have to deal with all the time, like what I have now. I guess it could be something that’s usually all right, but “flares” in nasty ways. But, I have to say, if it counts, give me a few weeks of seasonal allergies any year, over this. If seasonal allergies have a narrative, it’s that of a villain who comes back to make an impressive cameo over Sweeps Week, and then disappears for another year.

That, I could deal with.

-Ilana

Thursday, May 16, 2013

The Next Day: Diabetes Accomplishments, Big and Small

It's Day Four of Diabetes Blog Week! Today's topic is "Accomplishments, Big and Small"

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

My greatest accomplishments have never been physical. They have been intellectual, emotional, artistic, social, but not physical. I have a certain degree of disdain for my body, as it seems to subvert my desires at every opportunity. The last time I remember being proud of a physical achievement is when I managed to speak on the phone without losing my breath while running more than 5 miles an hour on the elliptical. Mostly, my body seems a useless rag; something that’s never as thin or pretty or working as well as I want it to be.

Diabetes is a very physical disease, but there is a large portion of it that is mental, and the mental definitely affects the physical. I’ll never be a “physical” person, but the strides I’ve made with this condition mentally and emotionally have undoubtedly improved my physical well-being.

There’s a large movement out there that says, “don’t let diabetes define you,” and it’s one that I absolutely agree with. But there’s always the flip-side to this idea, which can be equally limiting and dangerous, and that’s trying to define yourself completely without diabetes; not letting diabetes be in your definition at all. That’s something I tried to do for a long time. It was an abject rejection of everything my body was trying to tell me.

My greatest accomplishment has been an acceptance of who I am. I may never accept my large bone structure and ribcage, but I can now talk about diabetes; not in the abstract, but as something that affects me, and something that I work on each day. I’ve entered into an incredibly supportive community. I never would have thought about blogging on this subject or sharing it with the world at large until I said, “this is who I am, and this is how I want to work to make my life better.” There are many, many people I can thank for this development, for encouraging me to get the pump and self-monitor and work to bring my A1cs down from the horrorshow of high school and college to the 8-9s of grad school to the 7s I’ve seen for the past 2.5 years. There are so many who deserve thanks for support. In the end, however, no matter how much encouragement or nagging I received, progress was all up to me and to the decisions I made. This is a lonely realization, but also an empowering one.

The problem with describing a “diabetes accomplishment” is that an accomplishment tends to describe one specific moment, frozen in time; it describes something you've done, that's over. That 7.1 A1c I achieved in February? I’m extremely proud of it. But to focus on it as an achievement can result in ignoring the work that still needs to be done. It’s not like the moment where I received my Master’s. That’s an achievement; it’s done, and it’s not going to go away (although receiving a degree never precludes further learning). My numbers, on the other hand, can and will change every minute. My health can be taken away from me at any time. It’s so, so important to recognize and celebrate the work that went into achieving these numbers and feeling good, but it’s important not to dwell on them as an impediment to forward motion.

Diabetes is scary, with its power to take your life away overnight. In a way, just waking up, having survived another day, is its own accomplishment. But it can’t just be about sheer physical survival; rather, it’s about living the best life possible. It’s the commitment to survival; the willingness to try, and try again, in the face of insurmountable odds, which is really what matters.

I woke up this morning, and I started anew, and I continued to take care of myself.

Every day, that is my diabetes accomplishment.




-Ilana
 

Wednesday, May 15, 2013

A Life Of Moments

Welcome to Day 3 of Diabetes Blog Week! Today's prompt: Memories.

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

I have many memorable diabetes moments; so many that they almost blur together into a life. Most of them feature horrible highs or lows (for highs, see, for example, the Super Bowl party that ended with a crunch, here). When it comes to lows, there's the day an intensely low blood sugar coincided with my first migraine aura, and I thought I was having a stroke, because I couldn’t say the words that I was thinking (“peaches” became “pockets”). There was the one time in undergrad that I missed a test because I went low and fell asleep after treating, but it had a happy ending.

I wish I could remember more days where I was blissfully unaware of my diabetes because it didn’t act up in any way. Paradoxically, these “no-hitter” sorts of days aren’t memorable because I don’t have to think about diabetes screwing with my life, and that’s a good thing.

My diagnosis day was memorable: the return of an ominous phone call from the doctor’s office, the “you have diabetes, honey,” from my mom, the immediate transfer over to my best friend’s birthday party with barely any time to process; me, a twelve-year-old declining cake and ice cream because I thought I could never eat it again.

Diabetes provides me with many moments of anger.  There was this one that occurred about an hour ago, before I wrote this. I’m going to have at least three or four surgeries this year, all for things that have nothing to do with diabetes (I’d never had surgery before I broke my elbow in March).  I had an awesomely fast recovery from the first, so I could say, “screw you, diabetes, and your ‘slower recoveries’!” Today I consulted with the oral surgeon who will remove my wisdom teeth. I have accepted that they need to be removed, so I have no anger about that. The conversation I had with the nurse, however, made my blood boil:


Nurse: Are you a well-controlled diabetic?

Me: Yes.
Nurse: So you never have blood sugar swings?

Me: (smiling) Actually, there's not a Type 1 diabetic alive who doesn't see BG fluctuations.

Nurse: So you're saying you're NOT well controlled.

Me: No, I'm just saying that every person with diabetes has ups and downs because it's a complicated -

Nurse: So you do not have control over your diabetes.

Me: *livid pause* I'M WELL-CONTROLLED.


Seething in indignation, this is Ilana Lucas, reporting from the front lines of the misinformation war.

Other memorable moments, however, are happier ones. These often involve the Diabetes Online Community and the effect it has had on my life. I will probably write about this in more detail tomorrow, but there was the moment that I finally truly felt understood by a wider community, the moment I started a Twitter account that dealt with diabetes to connect with others, the moment where I just started talking about diabetes in my “regular life” Twitter account because I’d come to the realization that I wasn’t “Ilana” and “Ilana’s Diabetes” – they were both part of me. There were the D-Meetups, the first time I truly went and met people from the Internet, that have afforded me meetings and/or friendships with amazing people like Jamie and Larry and Kelly and many others.  There was the moment I decided to get a pump, and the moment my endo finally told me she was proud of me.

There were the moments where I achieved more than many might think possible, including my awards and degrees from two of the best universities on the planet, and my artistic and extracurricular pursuits. There was the moment when I stood in front of a class for the first time, knowing they were trusting me to be a professor and a role model, and all the highs and lows and surreptitious site changes in the classroom and the pump conspicuously buzzing in my underwear could not take that away from me.

There was the moment my partner, who has seen me through all the moments of sickness and health for the past almost nine years, told me he was ready for a lifetime of moments and asked me to marry him.
Good moment.

That means there’s a moment coming up next year that I desperately want to be memorable, but not because of diabetes: my wedding.

Diabetes has done so much to attempt to spoil my fun that I am terrified of what my wedding day will bring. So much planning and money and work, and the knowledge that it could still be a Bad Diabetes Moment sends chills down my spine. Yes, there are logistical details, too, like figuring out how to put a pump pocket in my dress, but the uncertainty that is there is the worst part. It’s like how some people worry about rain. Rain I can deal with; there’s an indoor ceremony space. There’s no way to run away from this.

A Sondheim lyric I am fond of quoting goes as follows: “Oh, if life were made of moments/Even now and then a bad one!/But if life were only moments/Then you’d never know you had one.” That lyric gives me hope. My wedding – whether my blood sugar is high or low – is one moment – one important moment, but still, just one moment –of a whole life; one with ups and downs, but overall one which I will be able to analyze outside of the moments, and one I intend to have well lived. I told the nurse that everyone with diabetes has ups and downs. That’s true of blood sugar, moments, and life in general. It’s true for everyone else, too.

So I’m looking forward to my wedding moment, but I’m also looking forward to the moments before and after. Because, if you zoom out a little, all those moments blur into a life.

-Ilana

Tuesday, May 14, 2013

We, the Undersigned... (Diabetes Petitions)

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On the second day of Diabetes Blog Week, our prompt is:

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

I couldn’t choose just one; here are my petitions for the day. (Sing with me: "On the second day of D-Blog Week, my prompter gave to me: four D-petitions...") Feel free to sign!

Attn: Pancreas

We, the undersigned caregivers of a faulty pancreatic unit, believe that it is time you returned to work. You have used up your unemployment benefits, and we all know that, like real unemployment benefits, it’s not nearly enough to live on, or at very least you can’t maintain the same quality of life you had before, while you had your job. Unlike most on unemployment, you have a job ready and waiting for you. Most people on unemployment want to work and are just having a tough time. You are sullying their good name, as you just seem recalcitrant. 

Once you have returned to work, we demand the return, retroactively, of all the time lost and all the moments ruined by dealing with your bullshit. This includes, but is not limited to, time spent taking shots, putting in pump sites, calibrating basals, calculating boluses, carb counting, glucose testing, fasting and non-fasting blood tests and A1Cs, time spent in doctor’s offices, time spent worrying, thinking, sleep lost due to the terror of the number.

You will also be held liable for any complications caused due to your period of inaction.

Attn: BG Readings

We, the bleeding undersigned, insist that you behave consistently in response to consistent stimuli. It is patently unfair to display such erratic behaviour to those who have close dealings with you. This costs them a great deal of time and energy, something that could be avoided if you would merely behave in any sort of reliable, sane, or understandable fashion. Please follow some sort of natural or physical law, or enter rehab. The definition of insanity is doing the same thing and expecting different results. As this is your modus operandi, we petition to have you legally declared insane; we will not be responsible for any of your consequences.

Attn: Society and comedians at large
We, the weary undersigned, demand that you cease and desist using the term “diabetes” as a synonym to the terms “fat” “lazy” or “ugly”. This constitutes slander, or libel (depending on whether the words are spoken or written). As you can see, this is not a true estimation of the facts. Please, in the future, laugh at diabetes itself, not persons with diabetes. There is a difference. This is one of many differentiations that must be made.

The following obnoxious statements are to be discontinued, on punishment of
1) fine, and
2) showing the speaker’s day-to-day health and eating habits to the world at large for scrutiny:
  • “Someone ordered a burger and a diet Coke?! What an idiot!”
  • Someone “deserves” diabetes
  • “You must have eaten a lot of sugar as a kid”
  • “That show/cute animal photo/song is so saccharine, it just gave me diabetes”
  • “Diabetes” used as a monolithic entity. Type 1 and Type 2 must be differentiated, though the rule about shaming or jokes applies to both.  It’s like talking about “cancer.” Cancers share many similar characteristics, but having a mastectomy for lung cancer would be problematic.
  • “Can you eat that?” (The speaker will owe the wronged party a meal of his or her choice.)
  • “At least it’s not…”
  • “But it’s easy now that you have insulin/you’re cured now”
The phrase “just wait five years” will be punishable by a five-year jail term that extends for five more years at the end of the term, until the injured party is satisfied.

Special sanction for news providers:
Any facts about diabetes that are reported to the general public must be accurate and specific to the type of diabetes being mentioned. Dangerously inaccurate information may result in the website or reporter being charged with negligence.

Wilford Brimley references may be used, sparingly.

Attn: Diabetes Online Community
We, the grateful undersigned, petition you to continue to be open, giving and awesome. We insist that there be an official “DOC Day” to recognize your amazing ability to save and improve lives.

Signed,
Ilana

Monday, May 13, 2013

Understanding the Endo

 

Welcome to the official Diabetes Blog Week at Diaturgy! D-Blog Week, started by Karen at Bitter-Sweet Diabetes four years ago, was instrumental in getting this blog up and going, so I owe her a debt! It's also so much fun to participate in the community every year, all choosing the same topics.  Not content to leave well enough alone, however, I worked in a surprise; I kind of took today's prompt and turned it completely around.

Today's prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

Dear Endocrinologist:

This week is Diabetes Blog Week, and today’s assignment is for us to write a note to you telling you what we wish you’d understand about us in terms of the toll diabetes takes on our lives. It was perfectly timed, because I saw you today for the first time in six months. I was the first appointment of the day, and for once, I didn’t have to wait for an hour or more.  My numbers were both exciting and disappointing this time. Exciting, because the A1c I did in February was 7.1: a life-with-diabetes record. Disappointing, because thanks to breaking my elbow, pain medication, a stressful semester and no real time to exercise, I’m back up to 7.6. Endocrinologists often seem to go into “airport security” mode; with older data, they try to solve the problem that has already happened and been dealt with rather than the unseen problem ahead; my broken elbow is mostly likely the shoe bomber of incidents; stupid and scary and probably not happening again, but I guess I’ll take off my shoes at the office now.  I do wish you’d appreciate the utter unpredictability of my life and work a little more; I can’t just “take on fewer responsibilities” for my health; I take the schedule I’m given. When the office says, “so, Mondays are good to book six months from now?” That’s two semesters away, so damned if I know my schedule. It’s always going to be a crapshoot.

Here’s the thing, though. I’ve already written a “what you should know” post. It’s here. It’s comprehensive. I’m not interested in writing a version of it again.  I don’t want to draw a line in the sand and see you as an enemy, an impediment to my progress.

I feel lucky, in many ways. I feel like you do listen to me. You know I’m planning a wedding, and you asked how it was going, and whether I was stressed about it. You know what I’m up to in life and you seem genuinely concerned about my well-being. So I’m going to deviate from the assignment today, because today I’m going to try to understand you. For the first time, now that I’ve been a professor for two and a half years, I think I really can.

We had all of our difficulties when I was a teen, and into my early twenties. Some of the biggest issues were during my own college years. I felt you didn’t understand me, or my life. You said you couldn’t understand why I “couldn’t just do this,” a twisted rewrite of an awesome diabetes social media slogan. I felt like one of a zillion patients. You didn’t have time for me, to truly understand. You don’t know what it’s like. You don’t have diabetes. In a way, I was both happy and resentful when our relationship finally got better, clicked and soared; when I got the pump, when my numbers came down radically, when you felt I finally got serious about my health. Why only like me when I'm a "good" diabetic?

Replace “health” with “class,” though, and I could be one of my own students.

You see, I know what it’s like to have a demanding schedule, and to have 120 people whose progress I’m tasked with following over the course of a semester. I know how hard it is to sit and meet with everyone, to truly track progress; to give more than the most cursory comments about improvements to development, analysis, and grammar, because there’s NO TIME. If I met with each of my students for 15 minutes a week, that would be 30 hours with no breaks, let alone all the teaching and the prepping and the marking.  All of my comments, besides on drafts that nobody has time to write many of, can only deal with old data; how to fix a paper that's already been handed in for marks.

I know it’s loads more fun to work with a serious, passionate, excellent student who gets me and my subject; we talk, we fly and I don’t really have to do that much “work.” I know how much nicer it is to have a student who actually wants to improve. I know that I catch myself thinking, even with students who have English as a second language and horribly stressful home lives and illnesses and who deal with raising young children while being young themselves and are one step from poverty, “I don’t understand why you can’t just do this.” After all, I can do this. Look at all the studying I’ve done. Look at all the other people’s words I’ve learned and analyzed. Look at how good I am. I'm a model student, and I chose this course of study.

But you didn’t, my students. You didn’t choose this. English isn’t a major at my college. It’s a requirement. It’s difficult for many of my students; it’s not natural to their bodies. It’s not a first language, either literally, or metaphorically. Instead, it’s a hurdle they’ll have to deal with for the rest of their working lives. And, for me, in the end, it all comes down to the numbers: did they pass, or fail? I can only give so many marks for trying and working hard; in the end the work has to show, and measure up to an arbitrarily set standard. Many of their systemic language issues are such that I have no chance of fixing them in 15 short weeks, though I drill and drill.

I care about my students. I care deeply. I try my hardest to listen, to understand their lives and to make them easier. I know, however, that I need to be met halfway for true success, while I live in fear of failing someone who is truly in need. I’ve become a counselor for 17-year-olds, 30-year-olds, 60-year-olds whose life experience is beyond mine, whose problems I may never truly understand, but I know one thing, and that’s my subject. I know it as much as anyone. And I try to do my best with what I have and what my students give me. I’m only human, and I might flounder around a bit, but I’m doing my honest best.

In the world of teaching, I am you; I am my endo. But, while I have my students for a semester or two, and keep in touch with a few of them, you have stuck with me, through thick and thin, for the better part of a decade. You have seen me not care, and you have seen me come through the other side. Thank you.

So enough about you needing to understand me. Because, today, I needed to understand you. And I think I finally do.

-Ilana

Sunday, April 7, 2013

Di-ronic

This began with an "empty cartridge" alarm waking me up at 6am on a Sunday. My apologies to Alanis. Warning: much like the original, many of these situations do not fit the technical definition of irony (however, I think this song might have a higher percentage of actually ironic incidents than the original).

A young girl, turning thirteen
She gets diagnosed…on her best friend’s birthday
Getting low but not drunk
From your chardonnay
It’s a death row pardon
But you still have to pay
And isn’t it Di-ronic
Don’t you think?

When you exercise
And your blood sugar strays
You eat utter crap
Oh and NOW you’re in range
When the media say
Type 1 and 2 are the same
And who would have thought
It figures

Mr. Play It Safe
Was afraid to drive
He tested every time
Just so he’d stay alive
One day his BG crashed
He’d only gone for a block
The news said – treat him with insulin
He’s in diabetic shock
And isn’t it Di-ronic
Don’t you think?

It’s like everyone
Thinking you should be fat
It’s some clueless guy
Asking can you eat that
Your endo knows you less
Than #dsma Twitter chat
And who would have thought
It figures

And D has a funny way of sneaking up on you
When you think everything’s okay and everything’s going right
But D has a funny way, of helping you out when
You think everything’s gone wrong- it makes you the person you are today

An immune system
That’s just making you sick
The nurse judging your whole life
From one finger stick
It’s like you’ve got one strip left
And all you get’s “Error Five”
It’s nearly dying of a low
From the substance that keeps you alive
And isn’t it Di-ronic, don’t you think?
A little too Di-ronic – and yeah I really do think

You do the same thing,
Get a different result
And you always think
That it must be your fault
Your D’s juvenile
Though you’re now an adult
And who would have thought
It figures

Well you never sought
But now you can’t hide
The province pays for pumps
But not the insulin inside?
“Oh, it’s not that bad;”
Well it’s just your whole life
And who would have thought
It figures

And D has a funny way of sneaking up on you
And D has a funny, funny way,
Of helping you out
Helping you out