Not Getting Married Today...

I'm getting married tomorrow.

I just wanted to say that.

All the prep work, all the stress, all the wonderful talents and gifts my friends and family have given me, are all coming together for what I hope is going to be one amazing night.

Ten years together tomorrow, and I get to marry the love of my life.

Diabetes, you'd better behave tomorrow. I'm not kidding. It doesn't really matter, though, because I truly have someone who will love me "in sickness and in health," and I know that. But I can't even really think about you right now, or the class I'm about to go teach, or anything like that.

Because I'm getting married tomorrow.

:)

The Diabetes Registry/The Diabetes Shower

I’m trying to create a wedding registry, which is hard when you have lived together for ten years, have a tiny city apartment, and need less, rather than more, stuff. Thinking of consumables and stuff I actually needed, I clicked around Amazon, and suddenly found myself looking at pages of glucose tablets. There was even a case of them.

Could I…could I register for glucose tablets? That would be weird, right? I probably shouldn’t do that.

Then I started thinking: you have a wedding registry, to start a life and home together.

You have a baby registry, to come together as “a village” to raise a child.

Where’s the diabetes registry?

When you’re diagnosed with diabetes, you suddenly find yourself facing a life of needing a ton of stuff to stay alive, all of it costly. Sure, insurance (if you’ve got it) pays for some of it, but it’s amazing how big of a hole can be burned through your pocket at the end of the day (or month). Making such a big financial commitment is, in some ways (particularly in a country without socialized medicine), almost like taking on a baby, in that it’s expensive, capricious, unpredictable, you can’t leave it alone for a second, and it will probably need plenty of medical care. Even though diabetes isn’t a choice like marriage or a baby, unlike the former, it will be with you ‘til death do us part. (Don’t listen to the people who give it five years. They have all been wrong so far.) Even with a baby, you’re only legally obligated to provide money and care for 18 years. I will hit that milestone with my diabetes in March, and I will only be 30.

So my proposal is, with every diagnosis should come a diabetes registry and a diabetes shower. You can eat cupcakes and drink wine (depending on your age), and talk about what you’re going to do on your honeymoon and what you’ll do when it’s over.

There’s no shortage of stupid games you can play. “Guess the carbs on the plate.” “Pin the test strip on the meter.” “Wrap the diagnosee in pump tubing.”  “Label all the items in the D-kit.” “Lancet quick-change.” “Can you eat that?” is an easy one, because the answer is always yes, except for the poison.

Instead of giving you advice on marriage or babies, everyone can give the guest of honour one piece of unsolicited diabetes care advice, with the knowledge that it’s his or her last chance to ever do so.

Gifts would be deeply appreciated, and everyone could ooh and aah over the various baskets as they were opened:

• A number of sharps containers
• A crate of glucose tablets
• An economy pack of insulin
• Pharmacy gift certificates
• Pump supplies to last a months, two months, or more, or insulin pen needles
• A “Calorie King” carb-counting book, or other
• Diabetes apps for your phone
• An exercise club membership (packaged with juice boxes)
• A case of Diet Coke
• A “cake” made of bandages, wipes, and syringes
• One month’s insurance premium
• Batteries. So many batteries. AAs and As, and lithium.
• An assortment of pump skins, for the fashion-forward
• Gift certificates for healthier groceries
• A bouquet of test strips
• Coupons for “sick days,” where others will demand nothing of you and help you feel better
• A pack of DOC-penned books
• A Blunt Lancet CD
• Tickets to FFL or another D-conference
• Blue-circle jewelry and wrapping paper
• Medic Alert bracelet
• Coupons for “at-risk” specialists and co-morbidities
• Comedy gift: 100 lancets (enough for the rest of your life) 

…well, you get the idea. All lovingly wrapped and presented for the adventure ahead. Stories would be told, love would be shared, and a few tears would probably be shed.

Perhaps it could even be a celebration of life and possibility.

D-Blog Check Day: Connect / #ShowMeYourPump

Hi all! Today (well, July 22nd) is #dblogcheck day, so I figured I should fight the summer laziness and check in (that is, post). It actually hasn't been a lazy summer; I'm teaching five class sessions a week to 130 students, I saw 36 plays in 12 days, and I've been socializing like mad, along with prepping for one of the biggest events of my life, but D-Block Check Day is worth stopping for. D-Blog Check Day is a day where we learn how many people we actually reach with our words. Many of us read blogs and, even if moved, never comment. Perhaps it feels intrusive, or time-consuming, or removes a layer of anonymity. The purpose of blogs, however, isn't only to work things out for ourselves on the page (though that is a large part of it - blog as therapy); it's to connect with others, to hear an "it's going to be okay," or a "me too." This day encourages us to step forward and be counted.

I used to have a very involved, nearly daily blog, through undergrad and most of grad school. It was over at LiveJournal, if anyone remembers that. Now, Facebook and Twitter have taken over the world of connection (so instant! So many "likes"!), and the LJ world has dwindled to the point where it's hard to convince myself to put in the effort to chronicle my life. I'm not disparaging Facebook, and I kind of wish there was a "like" function on this blog; after all, what's an easier way to "check in"? Most of us don't remember to comment day-to-day, which is why we have this event. However, LiveJournal seemed more permanent, less ephemeral in its own way, which is a strange thing to say about two websites that both essentially exist in the ether.

When I go back to my college years, I see them in full. Highlights, of course, but much less carefully curated. I see events and whole conversations reproduced. I cringe at my emotional meltdowns, but I laugh and admire the passion and creativity that I and my friends brought to each others' worlds. My blog, my life, my feelings were open to the world, for better or for worse. (Now, the journal is locked to "friends-only," so it's a bit of a time capsule.)

Why am I telling you this? I'm talking about connections and the importance of reaching out. Almost a year into my LJ blog, more than ten years ago, someone who I'd never met reached out to me. He was moved by what I'd written. A friend of a friend, he had never been introduced to me, but we would both be on campus in the coming fall. He felt like he knew me, a bit, after reading my writing. He wanted to get to know me more. He commented more. We started talking. We took a chance, and met after moving in to our sophomore dorms.

And we're getting married in six weeks.

So connect. Connect. Reach out. You never know what will happen.

--------

The new Miss Idaho, Sierra Sandison, has certainly gotten people around the world to connect lately. She decided to be bold and wear her pump visibly clipped to her swimsuit during the pageant, while worrying what people would think. She won, is what they thought. She has started a hashtag, #showmeyourpump, to encourage others to be "out and proud" when it comes to wearing a medical device. This stirred up all sorts of thoughts for me. The first thought is that I have come a long way from when I refused to even consider wearing a pump. I have such better control with a pump that part of me berates myself for not getting one earlier, but I wasn't ready until...I was. Forcing myself to be "tied down" to a pump when I would have resented it might have been an even bigger disaster than waiting to get it in the first place. It was the people who connected with me (that word again), online and in person, who even convinced me to give it a try.

Now I'm out, as far as pump-wearing is concerned. I blog. I'm proud, even though the pump still makes me question my fragility, my femininity, and my desirability. Sometimes it is still claustrophobic, even when you're out in the open. The questions arise: what does this attachment say about me? What do people see when they see it; do they think I'm taking charge, or that I'm less of a person? (Most probably think it's a pager and I'm a time traveller from 1995.) I'm not shy about my pump, but often I don't deliberately display it. Therefore, I find myself asking: am I proud enough? Do I show enough?

A friend of mine and I had a conversation on FB (the LJ replacement) about what showing or not showing your pump means. I'm glad we did, because it clarified a few things for me. Here's how my side of the conversation went:

I wear a lot of dresses, so it's actually hard to show my pump without tearing it through the dress or clipping it to the neckline and dragging the front of the dress off. I usually put it inside the waistband of my pants, too. Otherwise, though, I'm not shy about it (though I realize that seems like a big "otherwise"). When I'm wearing a dress (see: every day for the past month), what that means is that I am "hiding" my pump to avoid breaking the line of the dress. I still want to be pretty. Does the pump mean I feel I'm not pretty, though, and is that why I hide it, or is it just a fashion consideration? As much as, for example, diabetes will be evident and a part of my wedding, I'm not going to clip my pump to the top of my strapless dress. Does that mean I'm letting down the side, so to speak? Am I playing off shame as a fashion crime? (Is it a crime?) Ultimately, there will always be that frustration with diabetes, that frustration with bodily failure, that will in some way shape how I feel when I look at my pump. Of course, if I looked like Miss Idaho, I might feel differently.

Ultimately, I don't think that we should feel like we "have" to show our pumps at all times, or that we are letting down the cause if we don't, because that's as much of a trap, a pressure, as the pressure to hide. It's like running a marathon: you shouldn't let diabetes stop you if you really want to do it, but you shouldn't feel like you have to do it just to prove you can. However, I unabashedly love the #showmeyourpump campaign, because it provides a safe and open space; it might sound like a command, but it's really just an invitation, and one we can respond to in our own time.

So, when I wear a dress, it's both a practicality and aesthetic choice for me, and for the most part, shame isn't a factor (shame is when it starts buzzing No Delivery under my dress two minutes into an hour-long Fringe play). A pump lets me wear a dress without it being obtrusive, even something relatively tight and clingy, which is one of the awesome things about the pump - it doesn't have to be front and centre all the time. So, when it's easier for what I want to wear, I hide it. If it's convenient for me, I show it. Not letting diabetes completely control you, to me, means that I get to choose when I want to make a statement and when I don't. No shame, and no pressure from others either way. I do, however, think it's a good idea to occasionally have that reflection and ask those questions, just in case there's something deeper under the reason of convenience.

Having said all that, it's about time I showed you my pump.

Is that an insulin pump in your hand, or am I just happy to see you?

Yes, yes I am.

Revamping Tradition: Diaversary Gifts

I have weddings on the brain, as mine is in (gulp) approximately three months. I started thinking about traditional anniversary gifts (which are sort of silly in their own way) and thought: well, shouldn't diaversaries have their own traditional gifts? If a wedding anniversary is a celebration of life and hard work, so is a diaversary, even if you usually choose your partner and not your diabetes.

Year one: Paper. Instead of paper, why not have the traditional diaversary gift be test strips? They're some of the most expensive "paper" out there, and all people with diabetes need more. Message: may you experience better numbers and fewer Errors Fives in life."

Year two: Cotton. Clearly, a whole bunch of swabs for wiping away blood, because the farther you get from your second diabetes anniversary, the less you're going to actually care about things like wiping your fingers before and after testing.

Year three: Leather. This is the year you give some nice fresh lancets, because they should be changed at least annually to avoid changing the skin on your fingers to, well...tough leather.

Year four: Fruit. I think this calls for grape our sour apple glucose tabs. Aren't anniversaries supposed to function as a pick-me-up, anyway?

Year five: Wood. Five is a special year, because it's the year most of us were told would bring a cure. I imagine that no gift-givers have that at their disposal, though most would like to give it. If that's not a possibility, instead of Wood, I think I'd like to call it "Would" instead. For the diaversary, ask "what would you do if you didn't have diabetes?" Then, try to make it happen anyway (safely).

Year six: Candy. This is easy. You could go back to glucose tablets, but I think really this should be actual candy. Something the PWD really loves. Something that acknowledges, yes, you can eat that.

Year seven: Wool, or Copper. Don't try to pull the wool over a PWD's eyes as a present (see: cure in five years). Instead, maybe a knit pockets for a pump, or a nice, shiny penny from the diagnosis year (harder to find in Canada), to be used to twist open the pump cap to replace the battery.

Year eight: Pottery, or Bronze. Nice as it seems, most PWDs won't quite appreciate you bronzing their insulin pumps. Since we have so much on our plates, though, maybe we'd like a new one as a present.

Year nine: Willow. If your PWD is me, this means get me something Buffy-related or bring me my kitten. But most people aren't me. The bark sap of the willow contains salicylic acid, which is an important part of aspirin. PWDs could use a stock of painkillers. Willows are also known for "weeping," so this could really be an opportunity to tell your PWD to let it all out. Bring tissues. The chance to vent and cry once in a while is an essential gift.

Year ten: Tin or Aluminum. Curses, foiled again! You know what often comes wrapped in foil? Really good chocolate. It's much better than the tin ear most of the D-police have when they try to prevent us from eating really good chocolate.

Year eleven: Steel. What do you get for the world-weary diabetic who has everything? Boxes of infusion sets. The needle is made of steel, and it'll cost more than a nice dinner for two at a semi-fancy restaurant.

Year twelve: Silk. All those needles are hard on the skin, so something silky to wear or silky lotion sounds pretty good.

Year thirteen: Lace. The teenage years are hard, and many of us start to feel like we are also a pattern or design made mostly of holes. For the thirteenth anniversary, lace up your running shoes and join a fundraising run or walk for diabetes, to show solidarity.

Year fourteen: Ivory. Obviously, you don't want anything from an elephant. That's wrong. Instead, think about what might make your favourite PWD smile, and make those ivories flash.

Year fifteen: Crystal. Around this year, I really started to think about the future and get better control. A crystal ball as a gift signifies a few things: we want to be able to see into and predict the future, even though we really can't. In terms of complications, sometimes what we do matters, sometimes it doesn't. Good care doesn't mean good things, bad care doesn't automatically mean bad things (though it's much more likely to). A crystal ball may seem clear, but the future isn't, really. If this is too heavily symbolic for you, just get a nice wine glass, because she probably needs a drink.

Year twenty: China. A great gift would be to make a lovely (or many lovely) meals that have exact carbohydrate information, so that there are no surprised and your D-sweetie knows exactly what to do. Or perhaps you have the magic formula for not going high after eating Chinese food? Then share that.

Year twenty-five: Silver. Silver tells you how much you have achieved (twenty-five whole years!) but at the same time tells you that you still have a ways to go. You're not 100% on top and you can't rest on your laurels. Silver is great, and it's something to be proud of, but it's not time to retire just yet!

Year thirty: Pearl. Pearl jewelry reminds us that often irritants create something beautiful. Without diabetes, you wouldn't be who you are today. This is for better or for worse, but usually for the better. Resilience is developed, along with maturity. Friends have been made, and art created. We've made pearls with what we've got.

Year thirty-five: Coral. If you've lived with D this long, it's time for a celebratory trip. Just make sure your pump is cool and waterproof when you go snorkeling. Or maybe the gift won't be coral, but oral (say, oral insulin).

Year forty: Ruby. Let's say (conservatively) four tests a day, 365/366 days a year. That's around 58,440 blood tests. A faceted ruby looks like a drop of blood. You've earned it.

Year forty-five: Sapphire. A round, blue jewel is the perfect symbol as we reach the height of life achievement.

Year fifty: Gold: After 50 years, a PWD deserves a gold medal. There is actually a program in place by Joslin to give them one.

Year sixty: Diamond. Anyone who can survive diabetes for 60 years is tough as nails - or tough as a diamond - so this is appropriate. Diamonds seem rare, but are less rare than we think, and that's where diabetes care is leading us: a place where 60-year diabetes survivors aren't rare. If you don't want to support the diabetes industry, a lab-created diamond is also appropriate: we're alive because of synthetics, but that doesn't mean we sparkle any less, even if some doubt our worth.

D-Blog Week Day 7: My Favourite Things

As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

I'm still travelling and singing around the Maritimes, so I haven't been able to read so many days' worth of amazing posts. I decided to concentrate on some of my favourites from one particular day, my favourite prompt where I did manage to read every single post. I love poetry, wordplay and rhyme, and I was pretty excited to see what people came up with for the poetry topic. I'm especially excited because I created a new English course for my college which runs for the first time in the fall, and that means I get to really teach a section on poetry to undergrads for the first time! Though unfortunately I won't get to use any D-Poetry, I think these are all worth your time.

I love this week every year, and I want to thank everyone who wrote, who read my blog, and especially the kind people who have commented. You all warmed my heart. Thank you.

The first category is near and dear to my heart: parodies.

I love William Carlos Williams parodies so much. It's unhealthy. I'm going to teach that poem and use it to show how poetry is a living art form that we still constantly respond to. Here's another fun one for my collection of "This Is Just To Say" parodies, by Naomi at T1International. I always wondered why he ate those plums (was it spite? Assertion of power?) but a low makes total sense.

10 Things I Hate About You is a guilty pleasure, but one of my favourite movies of all time. It just hit that snarky Shakespearean sweet spot when I was in high school. Here's a parody of Kat's final poem that just works so well with diabetes, by Jessica over at Chasing Lows.

Scott at Rolling In The D did a Spongebob parody that I thought would make a nice companion to my "Under the D" Little Mermaid undersea parody, and My Lazy Pancreas also went Disney with her takeoff of a piece from Frozen.

The second category is limericks and humour.

I thought Laddie's post from the perspective of her dog Abby was just cute and funny, until it hit me with the image of diabetes being that big black dog that never leaves your side ("the black dog" also being a famous euphemism for depression). Loved it.

Pancreassassin's limericks just got better and better. I loved the unconventional rhyme about the insurance company, and the thought of a low causing someone to almost trip over their dog made me laugh, probably because it's true.

"My uncle's feet fell off/To everyone's surprise" and the "Can you eat that?" refrain wins this poem by Mike at Every Day Ups and Downs a spot on the list.

The third category is imagery and lines that took my breath away.

I love Christel at The Perfect D's comparison of an insulin needle to the needle on a record player. It's beautiful.

The use of the sestina form at Coffee and Insulin was really well done and unusual.

The last line of this poem at A Sweet Grace is just unexpected and brilliant, and the rhythm that the writer creates is so compelling.

Thanks to everyone for your hard work every day, and for an amazing D-Blog Week, especially Karen for putting it all together and tirelessly commenting on everything. Keep writing, keep talking, and I'll see you at #dsma!

D-Blog Week Day 6: Saturday Snapshots

I wish I could send you pictures from Halifax, which is where I must be by now. But, since I'm travelling and posting is probably an impossibility, you get a shot from my apartment on Thursday.

Today's prompt:

Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

I call this: "The Agony and the Ecstasy." Or, "Insulin and Glucose." Or, "The Circle of Life."

It's like Ebony and Ivory, only they don't really work together in perfect harmony. Rather, they chase each other's tails around and around, like a yin-yang comprised of angry, excited puppies.

I've been having a LOT of trouble with lows lately. Those six bottles have all been emptied in the last few months, and they're not all I've used to treat. They come in four flavours (grape is obviously a favourite) and from four different companies, from two different countries and more than one state, as I've picked them up as I've gone along, to try something cheaper or new. Is it any wonder I've struggled with my weight loss goals? That's a ton of sugar, and none of it I wanted to eat!

The humalog is balanced on top of it to show the precarious balance between the two substances. They're not mixing together, though. They're separate. My pancreas and liver, were they working harmoniously, would instantly (or nearly) balance them, but for me, it's one, then the other, then one, then the other, in a ceaseless cycle.

The humalog also shows how blessed I am to live in a country where I can have so much healthcare provided to me, and how lucky I currently have to have (temporary) insurance for supplies. Much as I grumble about how temporary and capricious my insurance situation is, when I do have it contract by contract, I can go out and get a huge supply of insulin and nobody questions me.

One box is ripped open to show that this is current and a work in progress. It's ripped open messily, because, well, that's me, and ain't nobody got time for this shit.

Now I can probably get rid of these bottles, unless I want a permanent art installation.

D-Blog Week Day 5: Diabetes Life-Hacks

On the fifth day of D-Blog Week, Ms. Karen gave to me...

Five hacks of D!
Four portion shortcuts
Three clothing mods
Two carb counting tricks
With the warning that YDMV!

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

 

On the “Diabetes Lifehacks” front, it occurs to me that either I have very few official lifehacks, or few that will apply to more people than me. Diabetes is such an individualized illness, which is ironic when you realize that the world even tries to lump the two types together (not even dealing with variants like LADA and MODY), let alone recognizes that YDMV (your diabetes may vary). So, most of the things that I do are either general (decreasing basal 50% an hour before a workout), or specific (I crash overnight most of the time, so if I’m under 8 or 9 I don’t correct, and if I’m anywhere between 4-7, I can essentially “eat for free” right before bed. (This is the opposite of a weight loss hack, unfortunately)

A few things that might be helpful:

1.  Empty pill bottles or glucose tab tubes are great as improvised sharps containers on trips. They even fit infusion sets! This comes to mind, as I’m actually travelling across the country as you read this. My choir (The Amadeus Choir) is on tour in the Halifax area, and is the keynote choir for Podium, the national choir conference. I have never been to the Maritimes, so I look forward to scattering my sharps across the country!
2. If you find the plunger on your pump cartridge is annoying to use or you don’t want to carry one, and you use insulin cartridges, you can use the cap of the needle to push down on the base of the insulin cartridge. I find that it gives a more controlled flow into the cartridge, and I’m far less likely to suddenly over-pull and leak insulin everywhere as the bottom comes out of the pump cartridge.
3. Reuse and refill the small glucose tab tubes from the big bottles; it's cost-effective. Watch out for putting a different brand in without testing sizes first, and don't force it. I had tabs get permanently stuck, which is not good when you're desperate.
4. For me, the thigh thing never works for pump clipping. underwear is the way to go when you're wearing a dress. Never wear a dress the day you fly, if you want to get out of security in a timely fashion with your dignity intact. (I flew on Thursday so it's on my mind).

Less, or possibly more, seriously, here are some other hacks that have helped me live my life:

1. If you're contemplating quitting entirely, don't. (But you can ease up for a bit, as long as you maintain a baseline to come back to.)
2. If you're frustrated, take a breath and count ten carbs.
3. If you're about to tell someone off, consider telling them "on" instead, with positive information.

Least interesting/adequate life hacks ever? Perhaps. I’m not sure if I’ve discovered any magic. But there are probably things that I do as a matter of course that other people would consider “hacks” and vice versa. I just haven’t thought of what they are yet.

D-Blog Week Day 4: Mantras and More (Telling Stories)

Today's D-Blog Week topic is Mantras and More.

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

Telling Stories

There once was a girl whose pancreas didn’t work. One day, it just up and quit. The girl didn’t know what she had done. Was it something she said? Did her pancreas win the lottery and move out? Was it collecting unemployment?

The girl felt alone and affronted, and slightly unloved. To lose one’s socks may be regarded as a misfortune; to lose one’s pancreas looks like carelessness. Her life changed. Her world changed. Her frustrations mounted. The world was an ever-shifting morass of peril and uncertainty. When she saw a really terrible blood sugar result, or when medication made her nauseous, sometimes she just wanted to quit.

Sometimes, a voice in the back of her head disagreed with her defeatist attitude. It said:

Each drop of blood is a drop in the ocean

Each high and low is a wave in the sea

Each day you live represents forward motion

Each day you make it the best it can be.

The girl didn’t think much about this, as thinking in rhyme was not an unusual occurrence for her. She grew up, and her diabetes took it badly, and she took it on the chin.  She thought this disease was useless. She went off to school, leaving her big Canadian city for a small American Ivy college town, and diabetes came with her; or, rather, it came before her. It got in her way. It got in the way of being normal. Feeling sexy. Losing weight. What was the use of learning so much at one of the best schools in the world if she couldn’t even fix herself? Her care, not great to begin with, slipped further. She was at an institute of higher learning, and she used that idea to divorce herself from her body. She took solace in her mind, but her mind wasn’t content.

So the little voice grew a bit more insistent. It said:

Each disappointment’s a pledge to be kinder

Each piece of knowledge a root in the ground

Each bad result is a solemn reminder

Each thing that’s lost creates something that’s found.

The girl got her cap and gown and moved to New York City. She studied theatre, and communication, and the human experience, but still had no idea how to communicate with her own body. For the first time, she started seeing examples of people who did, but she assumed it was because they were naturally better than she was. Her life was always busy. When you keep busy, you have a constant in an inconsistent and chaotic world. The girl got some of her first indications of what life might be like without a safety net, and in some ways she remembered how lucky she’d been, and she grew up a little more. When she worked on a play, and a character felt loss, she knew what that meant. When she worked on a play, and a character felt longing, she knew how that felt. When she worked on a play, and a character felt a lack of control, she was right there with them.

The girl had spent a lot of time looking inwards – twisting inwards – but that’s grad school for you. She had nowhere left to go but out. Doing this, she saw that she’d gained empathy and understanding, and something that would come from her own voice. But she was scared to do anything about it. There was no way to take control.

The little voice wasn’t scared. It was excited. As the girl packed up to return to her hometown with a second cap and gown, it urged her forward. It helped that other voices had begun to join in, voices the girl had never heard in person, but had read for hours. Together, the voices said:

Each person’s sigh is wind pushing a boulder

Each person’s words are a forge in the deep

Each person’s link is a hand on your shoulder

Each day you wake is a promise you keep.

The girl realized that, as much as it seemed that she had little to no control over her body, in some ways she had more control than anyone she knew. She was the president of her blood sugar, since the previous one had resigned. Unfortunately, her endocrine system was not inclined towards democracy. But, as the Lorax left carved in a circle of stones, “Unless.” “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” She found that, for the first time, she cared. She would not be a circle of stones. For the first time, when she spoke, the voice issued from her own mouth. She told herself:

Each test you face is a chance to do better

Each thing you miss is a sign that you’ve grown

Each chance you take means you’ve written a letter

Each page of text makes your story your own.

Sometimes I tell myself this story late at night, when the world shifts and the failures and small mercies of the day coalesce.  I wonder how much of it is true, and what details I’ve filled in to suit the demands of my own narrative. Anyone who has diabetes, though, knows that truth is relative. Anyone who has diabetes knows that getting through the day is the first step to finding the truth of yourself.

Each drop of blood is a drop in the ocean

Each high and low is a wave in the sea

Each day you live represents forward motion

Each day you make it the best it can be.

DBlog Week Day #3: What Brings Me Down

We're on the third day of Karen's stellar DBlog Week, and today we're asked: May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

The title of this prompt has had ELO's "Don't Bring Me Down" stuck in my head for days. I don't want to talk about that, though. I want to tell you a story about the most recent day that brought me down.

On Monday, I went to see my endocrinologist. If you’ve read past posts, you’ll know that we’ve been seeing each other for a decade, and that our relationship has had its ups and downs, but has vastly improved since I moved back to Toronto in 2010, found the DOC, got an insulin pump, and got my diabetes groove back (though is it considered getting it back if I’d never really had it to begin with?)

It’s been a strange feeling, going from absolutely dreading an endo visit to going in pumped (pardon the semi-intentional pun). This time, I was pretty excited. My glucose levels had never been better, if my meter was to be believed. More lows, but less bouncing, and much more in-range. I very recently joined a gym, and felt last weekend that I was kicking diabetes’ ass. I was sure that this A1c was going to be my best ever. It was going to start with 6. 6.7, 6.8, 6.9, maybe…but definitely 6. My average on the meter indicated 6.7, but I figured it didn’t tell me the whole story, so I didn’t think it would necessarily be that low, because I was hoping.

I have a daydream that I come back to every so often. I finally break the 6 barrier that I’ve never been able to crack. My endo opens the exam room door with a bottle of champagne in hand. I break down in happy tears. “I can’t believe I finally did it,” I say. “I can’t believe I’ve come so far.” A sports jersey with my last name and A1c number is revealed. Lucas, 6.8. The jersey is mounted, attached to wires, lifted to the ceiling for display. The number is retired. I’ve done it. Finally. One final achievement. One thing to cross off my bucket list.

I don’t know why the 6 barrier, as I call it, is so important to me. You’d think getting down to 7.1 once would have been satisfying enough. It certainly was to my endo. But not to me.

But on Monday, I didn’t get a 7.1.

I got a 7.4.

Now, that’s not a bad number, and it’s down from the last two. But it’s not even in my top three, and I was expecting at least .5 less from all the data I had. Therefore, even though it was respectable, I felt a sharp shock of disappointment. The wrong kind of tears prickled behind my eyes. I needed to make sure I had heard right. “That’s disappointing,” I said. The resident was not mean, but not very comforting (and still had quite a bit to learn; thankfully my CDE, who has T1 herself, showed up to guide her through some aspects and nip any offense in the bud); “yes, it’s not the greatest number, but it is down from last time.” She didn’t know how hard I’d worked. She couldn’t see it. Then I found out that, not only had I not lost weight via dieting and exercise, I had gained a pound (the nurse was shocked – apparently I really, really don’t look like I weigh what I do – what does that even mean, it’s like “you don’t look diabetic” – what does a diabetic look like? – but I’ll choose to take that as a compliment). In any case, I was feeling really discouraged about everything. I wasn’t pumped. I was dumped.

Then my endo came in, heard my number, and immediately congratulated me, and it was a very strange feeling, but it was what I needed to hear. While we’ve had our differences, here is a woman who knows my history. I know she knows my history, and suddenly things were once again in perspective.

A few years ago, I “knew” I had no chance of being a “good” diabetic, so if I had to be the best something (and I always did) I had to be the best at being the worst diabetic. It was almost a form of pride to be that “bad.” In undergrad, Princeton kids loved to one-up each other on how little sleep had been had, how many pages of work were due, how few hours were left to do it. Much of what we took pride in was how stressed we could make ourselves. It’s not necessarily the healthiest way to live, and often indicates a certain degree of fatalism.

Now, my perfectionism has swung the other way, and I’m disappointed by a number my endocrinologist sees as perfectly viable. I was “happy,” and she was not, when I was mistreating myself. Now she’s happy, and I’m not.

But if I thought about it this way enough, I could be.  Because disappointment can be positive. Because what this disappointment means is that I can see myself do better. I can expect myself to do better. I can see better as a possibility. I can see an A1c starting with 6 on my horizon. I CAN say, “I can’t believe I’ve come so far.” Because 6 barrier or not, I have. I have come so far.

I probably won’t be fully happy until that number actually gets entered into my chart, but the visualization of it is a good thing. To have disappointment, you need to have hope. Recognizing that is something to hold on to.

So I think I have a new goal. It’s not to break the 6 barrier, and celebrate with champagne and tears, and retire my jersey with an achievement unlocked. It’s to break the 6 barrier, take it all in, smile a little, and say, “okay. What’s next?”

What’s next?

It’s hope.

Diabetes Blog Week Day 2: Poetry (Under the D)

Today is the second day of Diabetes Blog Week. 

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.

If anyone knows me, you'll know that I really like writing poetry, and that I really, really like wordplay and song parodies. (My autobiography may be called: "Ilana Lucas: Another F*$%ing Song Parody.") Over the past several months, my handbell group has been performing a version of "Under The Sea" from The Little Mermaid. 

I, naturally, started to think about it as, "Under the D."  Here's our last performance, so you can listen and sing along. I give you: Under The D.

 

The treatment is always easier

With somebody else’s “type”

You dream of a cure in five years

That turns out to just be hype

But look at the bills around you

Expenses grow more and more

Your day-to-day life confounds you

What more can you bolus for?

Under the D

Under the D

Nothing is dumber

Than self worth by number

Of A1c

A pancreas you can’t replace

When all that you can do is give chase

Glucoaster riding

Barely subsiding

Under the D

You’re tired of D-cheerleading

To awareness- and fund-raise

You find your morale is bleeding

But everything bleeds these days

You’ve just got to get connected

In worldwide community

You won’t drown, but be respected:

You’re under the D-O-C!

Under the D

Under the D

Your calculations

And ministrations

Just sorcery!

Taking injections like a chump

Or just always attached to a pump

No getaways here

Counting our days here

Under the D

Under the D

We’re doing time fo’

No crime but auto-

Immunity

Under a white blood cell assault-

How dare you say it’s anyone’s fault?

We take exception

To your perception

Under the D

The basal appraisal

Bolus that trolls us

Carbs with the barbs

The endo cajoles us

Lancet will dance it

SWAGing, we chance it

Yes, we can eat that dough!

We slip from a strip

Inaccurate facts

We flip at a quip

That’s lacking in tact

We sigh at a high

A site in the thigh

And oh, those hypos blow!

Under the D

The D-O-C

When you have no choice

Raise up that e-voice

With agency!

When diabetes tells you “quit,”

Know that you’ll never listen to it

You’re a survivor

And you will strive here

Under the D

We’ll talk it out here

Until we shout here

The D-O-C

Each little Tweeter

Whose blood is sweeter

Adds to the chorus

You can’t ignore us

Starting a movement

‘Til there’s improvement

The D-O-C!

D-Blog Week Day 1: Change The World (Sweat the Small Stuff)

Today marks the start of D-Blog week, a wonderful yearly outpouring of the diabetic experience as organized by Karen Graffeo of Bitter-Sweet Diabetes. Go here to learn more about the week and why it's important.

Today's topic is: "Change The World" - what diabetes issues are you passionate about?

When we talk about changing the world, there’s a lot of emphasis on the big picture; drastically improving our lives, finding a cure, creating a more affordable diabetic world. On a day-to-day basis, however, we think and post a lot about the small annoyances of diabetes, partially because there are a lot of them. Broken site. Pharmacy mix-up. Insulin skunked. Supply cost. Error five. High. Low. Out of glucose tablets. Out of time. Out of patience. Buzzing inappropriately in class. Buzzing appropriately when some idiot says something stupid.

We get told to think big, think about the future; to not sweat the small stuff in life, but there’s a lot of small stuff worth sweating.

Sometimes the stuff we sweat seems disproportionate to the amount we sweat it. Example: Me, at the eye doctor. I have a phobia of things touching my eyes. Blood? Surgery? Injections? A little scary, maybe, but a walk in the park compared to the small stuff: eye drops.  But if I look at the big picture, it symbolizes fear of things I can’t control; fear of a loss of vision, and, with that, a loss of connection with others.

Sometimes, I think the reason I rant/post/tweet/think about the small stuff disproportionately, is because the big stuff is too scary, too multifaceted, too overwhelming.

If you listen closely, though, you’ll hear volumes. Each small thing raises its voice, and speaks as a symptom of a larger problem that we might not want to fully think about, or might not even be able to understand fully.

Let’s break it down. Let’s listen.

Broken site: pain. Reminds me of my broken body. Ruined day. How do I get back down? How many days is diabetes going to ruin? What if this happens on my wedding day? What if something like this kills me?

Pharmacy mix-up: I can’t believe my life depends on other people to this extent, and that I need permission to buy the thing I need to live, and that I can run out of it and my life can be in danger because of a mix-up. How can insulin be such a dangerous, controlled substance, and yet so vital? What if something like this kills me?

Insulin skunked: I’m so fragile when it comes to ecological events and even weather conditions. How could I survive a zombie apocalypse when sitting in the sun can deactivate the substance I need to live? How can I walk the line between the number of proscribed degrees I’m allowed to live in? If climate change destroys society as we know it, how long will I be able to go on? What if production stops? I can’t siphon the pancreases of roaming farm animals. What if something like this kills me?

Supply cost: why do I get punished for something beyond my control? Why, even with a great health care system, are prescriptions not covered? Why am I limited in where I can live based on the health care system of that country? Am I a drain on society? Am I seen as second-class, a “taker,” if I get help from the government? How can I spend my life as a consumer of expensive health resources? Why am I more valuable to corporations as a constantly-purchasing chronic illness than a cured, functioning human being? (What if that sort of thinking kills me?)

Error five: I’ve bled for no reason. I’ve lost money and vital fluid and I have to do it again. I wonder what it’s like not seeing your own blood all the time, even though I just failed at bleeding enough. You had one job, lancet. How can this be my day-to-day? Who knows if the strip will lie to me even if I get enough blood on it, and tell my I’m a number that I’m not? And what if something like that kills me?

Out of glucose tablets: Why is it part of life to have to shake and feel faint every once in a while? Now I’m sweating the actual sweating. Why do I have to eat the equivalent of candy I don’t even want, which derails any sort of weight loss progress? What if this happens in a public place, at an important meeting, a performance? What if it impacts my career advancement? What if I’m embarrassed? What if it happens at my wedding? What if it happens in a private place and there’s nobody around to help me? What if something like that kills me?

Misconceptions: How can people so fundamentally judge and misunderstand each other? How can people with similar conditions be so divisive in a rush to be the more sympathetic case? How can simple facts be so twisted and misinterpreted for the sake of a cruel joke, a hoax, or personal gain? And what if something like that kills me?

The refrain is constantly there. The small stuff is the heartbeat pumping the lifeblood of diabetes: the fear inherent in every move we make. The small stuff is the big stuff. The big stuff is the small stuff. We are made of atoms, and capillaries, and the tiniest prickles on the skin. When we complain about the small stuff, we are saying: we are here. We are saying: we are scared. We are saying: listen.  We aren’t saying the small stuff is always life or death, but contained within the small stuff is life and death, over and over. Our bodies have memories and we tread the same paths again and again, searching for a way out. When we find that way out, it will begin with one small step.

Each one of us, each, with our individual stories, our daily annoyances; each of us is the small stuff in a national, global, universal dance. But together, we contain multitudes.

Let’s sweat the small stuff together.

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