Wednesday, March 18, 2015

18 Years.

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

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

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

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

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

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

Then, this year, I did something that lots of people do when they become adults: I married the love of my life. Diabetes was by my side the whole day, like a junior bridesmaid or a particularly annoying ringbearer. Even though I was so nervous I could barely eat before the ceremony, it still
BG check pre-ceremony
gave me a 15.8 with all my jitters. After the insanity of the day, my parents accidentally took my purse with my meter home with them for the night, so I was flying blind at the hotel. But I never went low, I never felt sick, I was normal through dinner and after, and I never crashed, because, let me tell you, the day was one huge high.

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

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

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

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

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

Friday, September 5, 2014

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.


Wednesday, July 30, 2014

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.

Monday, July 21, 2014

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.

Wednesday, June 4, 2014

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.

Sunday, May 18, 2014

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!

Saturday, May 17, 2014

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.