Diabetes Blog Week 2015 Day Six: Favourites and Motivations

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)
 

Writing is very important to me. It’s a passion of mine. When I was younger, everyone thought I was going to write the Great Canadian Play. That may never happen, but I love getting to “write what I know” on this blog, and in the process, connect with other people in some way. Here are a few favourite moments, for me, in three categories.

 “Popular”

 My second-most read post of all time was one I almost deleted, because I wrote it in a very emotional space, and I was worried it would be controversial. “Liar” is about all the things, people, and institutions that lie to people with diabetes throughout our lives. It sparked a lot of discussion, was shared by many people and organizations, and even made it to a conference slide (which I found out about after it was posted on the Internet; it would have been nice to be informed or asked, thanks).

 “So when I hear that test strips can be +/- 20% in accuracy (a 10 could be 12, or 8) and are often worse, it makes me sad. Because it's a lie, and we're already dealing with so much misinformation, so many lies, that we'd like something to be true. Something that, instead, takes the best of us, the life from us–blood is life–and turns it into another lie. Something that comes from the heart, which is supposed to (but often fails to) be the truest thing of all.” "Cards Against Diabetes" is my most popular post because I think it’s a ton of fun, and it touches a nerve. Some people are turning against the game as becoming tiresome, offense for the sake of offense, but I think it works well in the context of diabetes – what’s more offensive than that? It’s nice to share our experiences, and make mocking matchups. One day it would be nice to play with a full deck (that’s how diabetes makes me feel, too).

 Pop-Culture

 I do a lot of pop culture referencing in relation to diabetes (see my Star Trek rant from Thursday). One of my favourite pop-culture posts is my comparison of the diabetes life to the life and mission of Buffy the Vampire Slayer (my favourite show of all time). It’s a constant, valiant, thankless and unpaid fight, and all diabetes has to do is have one good day.

“As diabetics, we walk the fine line between secretly believing we're immortal and knowing that we've got this expiration date. In a way, we have more conscious control over what our bodies are doing than anyone else; in another way, we have much less, our bodies being essentially out of control with so many factors to deal with.  Buffy's super strong and quick, but she has to deal with all sorts of violently unpredictable outside forces that most people don't.” 

Another, “Latitude and Longitude,” takes an episode of the West Wing, where Sam has his worldview destroyed, and explores how things you thought were solid, like latitude and longitude, can turn into constantly moving goalposts.

 “Now, we place great trust in our devices. We try to believe that they will never fail us. We place our lives in the hands of plastic and metal and batteries and medical research, sure that they will work; sure that they will always deliver some sort of base measure of performance. Like latitude and longitude. We know this isn't true. Plastic fails. Metal fails. Batteries are spent. People get sick. People die. We take a lot on faith. Like latitude and longitude, which are invisible.” 

Finally, my favourite kids’ book, The Phantom Tollbooth, lends itself perfectly to the emotional journey of diabetes.

 D-Blog Week

We all need a little impetus to get writing, and D-Blog Week is so amazing for providing that every year. Some of my favourite D-Blog Week posts, to round out the list:
 “Diabetes Hero”: All about the people who mean a lot to me. It was nice to thank everyone, and to hope for the future.

 "Everybody who has touched my diabetic life is my diabetes hero. It's trite but it's true. Everybody with diabetes is my diabetes hero. If you asked someone to say or draw the first thing that comes to mind when you say "hero," it would probably be a fighter of some kind. A war hero; a soldier. A firefighter. And that's what we all are. We fight every day against odds that sometimes seem insurmountable; in a way, they are. The odds are literally insurmountable. We can't win. The best we can do is try, and see another day the best we can. Bravery is not the absence of fear; it's having the courage to fight in spite of that fear. The definition of hero seems to be a person who fights even when he or she knows he or she can't win, because it's right. That's what we do."

 “Mantras and More” won a couple of D-blog awards, and I’m so happy it resonated with people.


 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. 

"Change The World (Sweat The Small Stuff)” was about the things that seem small, but really mean a lot. The post meant a lot to 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.” 

Hope this wasn’t too self-indulgent! It’s fun to walk down memory lane.

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.

A Life Of Moments

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

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

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

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

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

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


Nurse: Are you a well-controlled diabetic?

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

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

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

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

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

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


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

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

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

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

Good moment.

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

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

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

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

-Ilana