Diabetes Awareness Month 2017: I Just Wanted You To Know.

November is Diabetes Awareness Month. I haven’t posted about it yet because, ironically, diabetes has been kicking my ass for the past few weeks, so I’ve been all too aware of it. If you’re my friend, I’m sure you’re aware of diabetes. I used to never talk about it, and now sometimes it feels like I never shut up about it, but that’s the whole point of a chronic, incurable illness; it’s not going away, and it’s all too easy to have it kill you. Diabetes is horrible in times of ease and routine, so the more stressful life is, the worse it gets; it’s a vicious cycle. Yesterday was particularly bad, and the worst thing is, it’s often bad without reason. Let me walk you through my set of choices. (This is long, but please, please read it.)

A normal human’s blood glucose levels should be between 4-6 mmols/L, with a person with diabetes’ ideal levels between 4-8. Even more ideal are levels that don’t rise to more than 10 two hours post-meal. Beyond about 14, things tend to feel pretty bad. You get thirsty, your eyes get sandpapery, if you’re me you get intense heartburn, you feel sluggish, tired, and generally crappy. At 4.0 or lower (we’re talking even 3.9), things are much worse. Even 0.1 into the danger hypoglycemia zone and there are shakes, your heart pounds, you start feeling like you’re going to faint. You may break out into a cold sweat, which is charming. You get thirsty. Your body screams at you to consume everything possible to stay alive.

Did I mention that your blood glucose meter is only legally required to be +/-20% accurate? That means that you’re asked to stay in a 4-point range, and yet many readings in the 4s can actually signify a low. You don’t actually know. Most of the time you have to trust what your body is saying as well, which is difficult, because your body likes to do a nifty thing called betraying you at every turn. Don’t get me started on the lot that befalls people with hypoglycemia unawareness. It can be incredibly dangerous.

Here’s what can affect blood glucose:

• What you eat (Carbohydrates, but not just that. If you eat a mostly-protein meal, you have to take insulin with a complicated formula or your glucose can spike. It’s not just cutting carbs. One of the meals that tends to turn me into a high blood sugar zombie is plain roast chicken and vegetables, no starch, which is generally looked upon as a very healthy choice. What’s the food’s Glycemic Index? Exactly how much are you eating? Is it any wonder a lot of people just say “screw it”? Are packaged foods good for you? Generally not great, but they at least have the carbohydrate information on the box.)
• What you don’t eat
• Exercise (this can affect you during exercise, and up to 18-20 hours after. Your blood sugar can crash during exercise or it can spike, based on the type of exercise you are doing and how long. It can then subsequently rise or crash during the next 18 hours, at ANY time. “Just go to the gym!” Not that simple.)
• Mood
• Stress
• Amount of sleep
• The weather (seriously. Sitting in the heat can raise your blood sugar.)
• Other hormones
• What time of the month it is
• Quality or age of insulin
• How many days you’ve had an insulin pump site in
• Where the site is on your body
• Your insulin resistance
• Your weight
• Alcohol (drinks can spike your blood sugar and then crash it hours later)
• The time of day (I require different amounts of insulin at different times of day.)
• Whether or not the little bits of plastic that deliver the insulin get bent or work properly
• How much you are working, and what type of work it is (physical, brain)
• The “dawn phenomenon” - a lot of people have blood sugar spikes at dawn. Some people don’t. Some people spike sometimes and not others. There’s no good way to correct for this, because the last possible thing you want is to take too much insulin while you are asleep, because your blood sugar might go too low and you might never wake up. It is a thing that has happened to far too many people. We take it seriously.

Does this convince you that it is NOT simply a matter of carbohydrates in, insulin calculation, you’re fine?

So let’s talk about my day.

Tuesday, I cleaned my apartment all day. I was stressed. It was a lot of physical work. I did not eat that much: an English muffin sandwich, some vegetable soup, vegetables. For some bizarre, unexplained reason, I woke up at 16.3. By the time I went to choir in the evening, I was a respectable 6.5.

On Tuesday night, I ate a sandwich from the local sandwich emporium for dinner. Before eating it, my blood sugar was 9.2. That’s largely fine. I was unworried. If anything, I was slightly concerned about all the scrubbing I’d done on my hands and knees over the day. Would it tank my blood sugar overnight?

At 3:26am Wednesday, I wake up. I feel terrible, so I check. 17.7. Before the past few weeks, I had not been getting these numbers regularly, so this is especially inexplicable. But, the new landlords are coming to inspect the place and I am involved in a labour dispute, so there is semi-constant stress. I curse silently and take the right correction, hoping that it’s not too much of a correction.

I get up around 8:15am to await the landlords who never show up (stress, sitting and waiting). I don’t feel great, but chalk it up to stress. At noon, I decide to eat something. I check. I am 19.9. This is a horrible number. It’s higher than where I was at 3:30am. I TOOK MORE INSULIN AND I ATE NOTHING. Talk about inexplicable. I decide there’s probably a problem with my site, because the Unomedical sites compatible with my Animas system (did I mention Johnson & Johnson are pulling out of Canada due to a lower profit margin than they wanted, leaving those of us who use the Animas in a really complicated and crappy position? No more tears, indeed!) So I take more insulin. I eat my English muffin + protein, because it’s been more than 12 hours since I’ve eaten anything. I change my site, because I gave myself insulin, but who knows how much got through. On a whim, I give myself five more units of insulin with the new site, assuming there’s been some blockage/leakage.

I have felt bad all day, but that doesn’t stop me (well, thanks to Claire) from going to the gym. Before I go, I check. 7.4! YES, finally! My 5-unit gamble paid off. Without it, I’d still be sky-high from nothing. So I eat some asparagus soup, very low calorie and low carb. I take a little insulin for it. I reduce my basal rate by 50% for two hours (if you want to go exercise, you need to plan to start this an hour before. If plans change or something comes up, whoops, now you have to deal with that!)

I spend an hour at the gym with Claire. I run a couple of miles, do a bunch of weight machines, leg exercises, stretches, etc. I am doing good things for my body. I am being healthy. Claire and I decide to go to a storytelling show, that is, appropriately, about blood (the organization Bloodwatch and the tainted blood scandal of the 1970s-80s in Canada). First, I need to eat something. The only place around is Subway, so I have a small sandwich, mostly vegetables. I check and I’m 4.1, but I feel like I’m going low. I could already be low; remember, +/-20% accuracy. So I eat the sandwich and modify the amount of insulin I’m taking to about half the sandwich. It’s not like I’m eating raw sugar; it’s going to take a bit to bring me up.

During the 2.5 hours in the storytelling evening, which is absolutely fascinating, I consume one beer. It’s a gose, not super high in alcohol. We decide to go to a bar afterward. I’m sitting at the bar, and I don’t feel great, so I test myself. 16.2. What in the everloving hell. It’s terrible again. So, in the hour-plus at the bar, in which I consume one more beer (not particularly binge drinking), I take a little more insulin.

I get myself home at about 12:15. I’m hungry, because I’ve eaten maybe 1000 calories that day due to weird blood sugars. But I’m a little TOO hungry. And I feel out of it. Looks like the beer and the exercise and the insulin have finally come together to do their unholy work. I am 3.0, and from the way I feel, I’m dropping fast, headed into the 2s and beyond. Eat everything, screams my system. Eat it all, NOW. I eat plain sugar by the spoonful. Blech. I eat four fun-size Mars bars, which seem bitter after the sugar. I eat some cereal, no milk. I feel I have undone my entire workout. After sitting and shaking for what seems like forever but is probably just a couple of hours, I feel secure enough to fall asleep on the couch. I don’t have the energy to stand up and go to bed.

It’s 4:45am. I wake up, and feel a little queasy in anticipation of how badly my sugar must have rebounded after what I’ve eaten. I check. I’m 11.3, which is honestly not so terrible. I take a correction and drag my ass to bed.

I get up at 8:15 to await the building manager. I’m exhausted. Out of reflex, I check. I am 5.5. I am exactly where I want to be. It is perfect, for only this moment. I have won, for only this moment. I am too tired to enjoy it. It will be different in an hour, in half an hour, in fifteen minutes.

I will still go to the gym today.

This is a bad day. Not all days are like this. I have had pretty good control these past years, all things considered. But it is not the worst day, either. So, on Monday, when the endocrinology resident asked “how are your blood sugars,” I just laughed, and said, “Well, it’s day to day, isn’t it?” Because that’s what it is. It’s day to day, and it’s all day, every day. And with all this, I have a graduate degree, freelance, (generally) have a more than full-time job with millions of factors in itself, go to the gym, perform in various arts groups, do theatre reviews, organize hundreds of interviews, and generally volunteer for just about everything under the sun to make people happy. Sometimes, it feels like a miracle. In the past few weeks, because of the strike, I have realized how very tired I am. This does not mean I will stop.

Don’t get me wrong. Other people have it much worse than I do. I do not need to worry about running out of money or support. I have an incredibly kind network of people out there. I am privileged. Thanks to Dan, I even have health insurance, but that doesn’t touch the day-to-day work of this.

So that’s Diabetes Awareness Month for you. Next year, I will still have diabetes, though other things may be different. I will still be the person that I am. I will still be trying very hard. I will post again.

I just wanted you to know.

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