Tuesday, March 18, 2014

At Seventeen (Mice, Mice, Baby)

Today marks a couple of milestones. One of my very dearest friends turns 30 (Hi, Chris! I love you!) and my diabetes diagnosis turns 17 (two inexorably linked events in my head; as I've said before, the first day of diabetes + birthday cake is really effing confusing for a twelve-year-old).

I was going to say hi, diabetes diagnosis, I hate you. In some ways (many ways) I do hate diabetes as much or even more than I always have. It's pretty awful. The roller coaster ride, the wheel of fortune, the tower of terror...I could just keep naming rides and metaphors, but you get the picture. Diabetes is unpredictable and wild. It's just like a seventeen-year-old (or, as I imagine a wild seventeen-year-old to be; diabetes rebellion aside, my teenage wildness looked a lot like mildness).

My D is seventeen
I've had some very bad years
I've had some much better years
They happened very recently
I found the D-O-C
Much lower A1c's
My D is seventeen

On the other hand, my D has been the biggest learning experience of my life, and I've always said that I love learning! My D has made me a ton of friends, and I love friends! My D has given me so much to write about, and I love writing! It's funny; if a genie materialized before me right now and told me he could cure me, I would say yes in an instant, but if he said "I can make it so you never had diabetes in the first place," I don't know what I would say. It's made me a better, more controlled, more compassionate person. In some ways, it's made me special. I still think it had a hand in getting me into my first-choice university, which was an incredible experience and has affected my life in immeasurably positive ways.

I learned the truth at seventeen
That while D sucks, you have the means
To only suffer, or to smile
We're only on this Earth a while

In any case, today I choose to smile. Here is a cupcake my sweetheart gave me for my Diaversary (Bailey's frosting and chocolate cake). He's a guy who's in it in sickness, in health, and in cupcakes! I love him very much.

When I was newly diagnosed, I was told that there would likely be a cure in five years. I know most of us in the same boat could finish that sentence. I really held on to that idea. In a way, my first five years (until I actually turned seventeen) of diabetes were me in denial, trying to mark time until the cure was found before I went off to university. In a way, the healthiest (though most depressing) thing I've ever done is to basically "Let It Go" - let go of a hope for a cure in my lifetime. I'm not going to say I wouldn't welcome it, but I want it to be a nice surprise, not a "what took you so long?" To that end, I know we're all sick of seeing studies that report "A CURE!" - in mice only. As a Diaversary present to myself and you, I present my most elaborate parody ever. Please put on Vanilla Ice's seminal tune, "Ice, Ice, Baby," and rap: "Mice, Mice, Baby." I love you guys! I don't love fake cures.

Yo, D-O-C, let’s kick it!

Mice, mice, baby, mice, mice, baby
All right, stop. Commiserate and listen
I know these scientists are full of ambition
Ideas grab a hold of them tightly
One experiment and they’re on the nightly
News – it’s a cure? Yo, we don’t know
Though I know we want to think so
It seems so extreme, a dream too true to handle,
But please, remember to breathe, it’s a scandal

Calm down. Don’t rush the lab rat room
It’s hard to think when some hope pierces the gloom
But deadly, to wish instead of taking care of me
Less than five years, who cares about A1c?
Hate D or leave D, you still better play
Don’t put off to tomorrow the tests of today
Diabetes is a problem and maybe they’ll solve it
But this cure won’t do much unless they can evolve it

MICE, MICE, baby
They cured some MICE, MICE, baby
They cured some MICE, MICE, baby
Not humans, mice, mice, baby

Now that conclusions are jumping
With the hype kicked in, the media are pumping
Make a quick point, they anoint, but they’re fakin’
It’s as much of a cure as a diet of bacon
And we’re equally burned, ‘cause they show us a symbol
Of progress when evidence isn’t so nimble
And a high horse is ridden by those in the know
Breaking the news to the newbs caught in the show
It’s just “cure” v. 5.0
How much smoke can a headline blow?
If I gave this cure a try, then my meter would say HI
Not a chance, I just have to keep getting by
Diabetes will pursue me and I can’t stop
A mouse won’t live five years, me neither, I’ll drop
Then I’ll be dead.

Yo – so you know what, buddy? I appreciate the studies.
I’m glad the tiny beasties no longer have the ‘betes
No more sad squeaky sugar-filled mousy entreaties
But my body’s not a mouse’s, a mouse’s isn’t mine
And when is the day when they tell me I’M fine?
I feel like a chump with my ear to the wall
Running after a cure like a mouse stuck in a ball
Platitudes ring out like a bell
It’s hell, just a shell, well, don’t fall under the spell
Falling hopes are dashed real fast
Optimistic’s just sadistic and I’m running out of gas
My bumper needs a jumper ‘cause the deck seems stacked
I’m just trying to survive with a pancreas that’s cracked
D-Police on the scene, you know what I mean
They pass judgment, act like I’m a mean sugar fiend
Diabetes is a problem, but that doesn’t solve it
And this cure won’t do much unless they evolve it

MICE, MICE, baby
They cured some MICE, MICE, baby
They cured some MICE, MICE, baby
Not humans, mice, mice, baby

Take heed, because I’m a high glucose poet
If this applies to me, well, then why don’t you show it?
It’s the D-O-C’s town, and we’re going to make a sound
Enough to shake and kick holes in the ground
‘Cause there’s fast, safe and cheap, or there’s slow, drag, and kill
My BG is always changing but advances seem so still
Strip safety reform, that’s a hell of a concept
Not sexy, but fixing “the D got her as she slept”
The closed loop system, with low suspend will aid
This ninja-like feeling of life lived on a razor blade
So sharp, other people say “damn,
How you measure out a life in shots and milligrams?”
I keep my composure with goals, some strict, some loose
If I’m high, then I’ll cry, if I’m low, I’ll drink juice
Diabetes is MY problem, and I’m going to solve it
With my friends worldwide, we’re going to evolve it

NOT mice, mice, baby
They cured some mice, mice, baby
That must be nice, nice, baby
But we’re not mice, mice, baby
No more advice, vice baby
‘Cause there’s a price, price, baby
We’re STILL not mice, mice, baby!
Not quiet mice, mice baby

Yo, man, let’s get out of here! Word to your support network!

-Ilana

Tuesday, March 11, 2014

Strips Do Lie (Stripkira Feat. Highclef Jean)


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

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

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

Blood up in here tonight,
No Error Fiving, no Error Fiving
Capillary action up in here
No Error Fiving, no Error Fiving

Strip Safely, Strip Safely

I never really knew that strips could fail like this
Turns my chart data into gibberish
Am I high (si) or low (si)
Or somewhere in the middle (who knows, si) -
Strip Safely, Strip Safely

Oh strippy when you read like that
You make a woman go mad
So be wise and keep on
Reading the signs of my body

And I’m low tonight
My strips do lie
And I’m starting to see the light
All the aggravation, the tension,
You must see this is short of perfection

Hey strip, I can see your numbers changing
And it’s driving me crazy
You don’t seem to know where you are ranging
Accuracy is hazy

And when you have such a margin of error
Nobody can ignore the way you treat my body, strip
And everything so unexpected – one-test it, two-test it
And oh the numbers so different

Hey strip, I can see your numbers changing
In a forty percent span
And so I don’t really know what I’m doing
I can’t seem to make a plan
My will and self-restraint
Have come to fail now, fail now
See, I am doing what I can, but with bad info
That’s a bit too hard to calculate!

I never really knew that strips could fail like this
Turns my chart data into gibberish
Am I high (si) or low (si)
Or somewhere in the middle (who knows, si) -
Strip Safely, Strip Safely

Oh strippy when you read like that
You make a woman go mad
So be wise and keep on
Reading the signs of my body

And I’m low tonight
My strips do lie
And you know that isn't right
My life hangs on each injection,
You must see this is short of perfection

Oh you know I’m low tonight
My strips do lie
And it’s giving me a fright
If you’d be a little more accurate
Oh, I’d even change out my lancet

No Error Fiving
No Error Fiving
Strip Safely
Strip Safely

Thursday, February 20, 2014

Manners-isms

Miss Manners, yesterday, wrote a column in which she told people with diabetes that they should not test their blood sugar or administer insulin in public, specifically referring to airplanes. Miss Manners requests we wait until an airplane washroom is open, we are allowed to stand up, we can push past the person next to us, avoid the drink cart, and then try to balance a tester in a probably dirty, cramped room with nowhere to rest it. All this is to avoid the person near us having to hear a click and see half a drop of blood going into a test strip. Because that’s rude.  “Medical applications…should be done out of sight,” writes Miss Manners.

Miss Manners thinks diabetes should be seen and not heard; except, wait, it shouldn’t be seen, either.


Hi, Miss Manners.

I used to be like you. I used to think that diabetes was shameful and it would be rude to subject other people to the vagaries and horrors of seeing me either testing my blood sugar in public, or giving myself an injection.

I used to always be “in public.” I used to not test my blood sugar for days, or even weeks. I used to have terrible A1cs that nobody could understand. It’s because of stuff like this. People believing I was inconvenient and rude for trying to take care of myself – and me believing them.

Miss Manners, if you want to take on someone, don’t take on people with diabetes. Take on diabetes itself. I’m not rude. Diabetes is. I have to deal with this rude visitor every day. Here are some “manners” that diabetes doesn’t have.

  • Diabetes doesn’t wait for the right time to interrupt. It can strike like a cellphone ring in the middle of a concert, when you’re driving, or in an important business meeting. It’s more likely to strike when the stakes are high. I worry that diabetes will be the uninvited loud guest at my wedding.
  • Diabetes is gross. It involves bodily fluids and complications, and it reminds us that we have bodies and that they are fallible. All the time. So much of “manners” is pretending we don’t have bodies. Diabetes makes that impossible.
  • Diabetes overstays its welcome. Benjamin Franklin, one of the original advice columnists, has a quotation often attributed to him: “Houseguests, like fish, start to smell after three days.”  I’ve had diabetes for 6183 days; that I know of, anyway. Diabetes has only overstayed its welcome for 6180 days. And it has NEVER brought me a hostess gift, unless you count stuff I don’t want: no wine, no thoughtful chocolates. Diabetes makes me buy my own wine. Oh, and diabetes sometimes doesn’t play nice with alcohol either.
  • Diabetes is greedy. It takes your time, your money – and it never pays it back – and sometimes it demands a ton of sugar or the contents of your fridge.
  • It’s kind and polite to take care of the sick. Diabetes actually demands MORE when we’re sick, like a husband forcing his flu-ridden wife to make him breakfast while cleaning the house. It’s also polite not to afflict others with your illness if you don’t have to. That, however, only counts for contagious diseases. I can’t call in and say “woke up and I still have diabetes! Can’t come in today.”
People with diabetes have to deal with this consistent rudeness, in their own bodies, on their own turf, every single day. It’s honestly a manners victory that we’re not running around screaming “I’m high as hell and I can’t take it anymore!” all day.

We just want to take care of ourselves. Isn’t the kindest, politest thing to do…letting us do that?

Much of the idea behind being good to others is that everyone is fighting a hard battle, so consideration is key. I don’t know if that factors into manners or not, but I certainly hope it does. All I know is, when I started to make my diabetes public rather than hidden, when I stopped hiding away, when “oh, I’ll have to waste ten minutes getting to the washroom to test and the conversation will have moved on without me, “ that one more barrier to testing that made sure I didn’t, stopped: that is when I felt better and vastly improved my health. That was me not “mannering” myself into an early grave. That’s when the education and connection started, not when it was severed.

Perhaps instead of keeping a polite distance from each other, we could be a little unseemly and acknowledge that we’re all in this together.

Especially when we’re crammed together in coach.

-Ilana

Sunday, February 9, 2014

Spare A Rose

The day I knew my fiance was right for me was the day he explained, out of the blue, why he didn't get me flowers.

Now, I know that sounds strange. In your traditional sitcom, the guy who forgets to buy (Valentine's Day, birthday, anniversary, Columbus Day) flowers is always depicted as being, shall we say delicately, SOL (shit out of luck). This hapless gent tries to find something, anything, in the already-closed flower shops or the bottom-of-the-scraped barrel at the grocery store, or the gas station. Anything to prove to his harridan of a significant other that he cares. But when my fiance said, "I didn't buy you flowers," it was actually one of the sweetest things he's ever said, because of what followed.

"I didn't buy you flowers because I know they make you sad. They're pretty, but they die, and it breaks your heart when you have to throw them out," he said. Flowers are pretty, and symbolize life, but they also symbolize its fragility, because, cut, they die quickly. Instead, he gets me delicious things to eat, or takes me to a play, or gives me a book, or finds my favourite show, or even hunts for new and interesting glucose tablets; anything to show that he both cares and knows me as a person. Once, we went to a sushi place that made us intricate flowers out of vegetables; a wonderful subversion of the trope for a special day.
The veggie flowers

Our wedding will have very few flowers. If there are any, most of them will be living, in pots, so that people can take them home and cultivate their life, rather than admire their death.

Don't get me wrong; if you have ever gotten me flowers, I have loved them. I have loved the gift, and your thoughtfulness. And my heart has broken a tiny bit when I've had to finally throw them out; I hate to get rid of anyone's thoughtful gesture, even when it's expired.

I'm telling you this because it's Valentine's Day this week, and because there's a cause I passionately believe in that understands that, in the developing world, the life of a child with diabetes can be as beautiful and short as the life of a cut flower.

Insulin is expensive for me, particularly during a semester without insurance, but I can stock up on it and, in the end, I can afford it. Many people can't. The leading cause of death for children without diabetes in many countries is not hypoglycemia, DKA or diabetes complications: though the latter two are usually involved, the root cause boils down to lack of access to insulin. As another blogger pointed out, if you have to choose between feeding the rest of your children and one vial of insulin, the insulin will not win. Making that choice is brutal, but it is a brutal reality.

Lack of access to insulin is a diabetes complication that we can DO something about. So much of diabetes is random and unpredictable in terms of what happens to you, that it seems crazy not to fix the things we actually can.

To that end, I'm asking you to be my valentine and Spare A Rose. Spare A Rose, Save A Child is a campaign to raise funds for Life For A Child, an International Diabetes Federation organization that brings diabetes-related medical supplies and education to children all over the world. Nobody should die from diabetes, but most of all, nobody should die of diabetes due to a lack of education or supplies.

Spare A Rose asks you to omit one flower from your Valentine's bouquet of 12 roses, and to donate that $5 to provide a month of life to a child with diabetes. Donating $60 (12 roses) will sustain a child for a year.

None of us can choose the numbers on our ticket of birth in the lottery of life. For me, diabetes was a losing number. But I have so much love and care in my life, and because of my family and my opportunities I am comfortable financially. I have won so much. It chills me to the bone, and not just because it's February, to think where I could be right now had I been born in another country and to different circumstances with the same faulty genes. My life, like a rose, could have been cut.

Spare A Rose, Save A Child. I promise you'll be my valentine.


-Ilana

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