World Diabetes Day: Gain and Loss

It’s World Diabetes Day today. As I sat in “Sick Bay” in choir last night, not because I was contagious but because my blood glucose levels had spiked through the roof despite eating essentially carbohydrate-free for the day, I was thinking about how much I’ve lost because of diabetes, and how much I’ve gained.

I’ve lost time to feeling sick, shaky, sandpapered inside. Time to doctor’s appointments. Time to thinking and calculating and making dozens of tiny decisions every day.

I’ve gained three different selves: High blood sugar me, normal me, low blood sugar me. I’ve gained loved ones who can point out the difference between them nearly immediately. I’ve gained the worry that all of them are me, despite the radical changes blood sugar level can have on one’s personality; I don’t like that not all of them are pleasant.

I’ve lost sleep over feeling lousy or worrying that I might not wake up from a low.

I’ve gained a sincere appreciation of how wonderful it feels to have in-range blood sugars. Getting a ride home from choir last night, chatting up a storm and thinking how much better I felt with the absence of acid and sluggishness and pain, all I could think of was that some people, barring other illness, feel like that ALL THE TIME. THAT IS A GIFT. Please treasure it, if you’ve got it.

I’ve lost money to the insane expenses of treatments, medications, technologies. (I have not lost as much as many, thanks to luck, support, and country of birth.) 

I’ve gained empathy for others with chronic illness, and the knowledge that chronic illness absolutely shapes your experience of life. People with chronic conditions aren’t exactly the same as people without who sometimes experience illness, much like people who grow up in and live in poverty aren’t merely temporarily-embarrassed millionaires.

I’ve lost some of my inhibitions about talking about my experience with disability, and certainly a number around advocacy and asking people for help, though I’m not completely there yet.

I’ve gained weight, because it’s very, very difficult to lose weight with T1 unless you’re losing it through high blood sugars. 

I’ve lost the ability to do many normal things, like travel and exercise, without a lot of very careful planning.

Most importantly, I’ve gained a community, both of other people with diabetes from around the world, and the family and friends who are incredibly supportive and wonderful and kind. I thank you from the bottom of my heart. 

It’s World Diabetes Day, and diabetes is my world every day, as it is for so many others. Can we do something about that, please? Can we focus on gains that will help people, and not monetary gains for pharmaceutical companies? Can we take a real look at loss, and what that means for an individual, a community, a nation, a planet?

Or can I just gain a few hugs?

Thanks, friends.

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.

Diabetes Blog Week 2017 Day 5: More than Diabetes

I am much more than diabetes.

It’s fitting that this topic is the last of the week, because it basically bookends Monday’s topic, where I talked about all the different things I’m part of.

1. I’m a professor of English and theatre.
2. I’m a writer and reviewer.
3. I’m a dramaturg. 
4. I’m a singer (classical, a cappella, musical theatre). 
5. I’m a massive nerd and I write a lot of song parodies. If I go to musical theatre, Buffy, or Star Trek trivia, I’m going to win. (If you want to hear some really dumb Star Trek parody songs, you can takea look at my occasionally-updated Soundcloud). I have performed a few times at a Star Trek improv show, and won a rap battle against “Black Riker” as Beverly Crusher, the Bae from Sickbay.

I thought I might focus on one of my “weirder” interests (you know, because being a dramaturg isn’t weird enough), and amuse you with some videos. 

Maybe my weirdest interest? I’m a handbell player.

I’ve never played in a church handbell group, which is where 90%+ of handbell ringers come from. Instead, my friend Victoria, who did play in a church group in high school, decided that she wanted to found her own group (despite not being religious, she found the church to have a great youth group and theatre and music programs; heck, even I joined the youth group in high school and I’m Jewish. I just wanted to hang out with my friends, and there actually wasn’t any religion as part of it - one of the leaders was Pagan. Anyway.)

This handbell group was to be small, all-female, and, unlike most handbell groups, definitely not your grandmother’s bell group. It would be sexy and nerdy and funny (to exemplify this, Victoria has a full-arm tattoo of the inner workings of a handbell). We would play at comedy shows, variety shows, and a whole heck of a lot of burlesque shows. We would play Queen and Adele, Trans-Siberian Orchestra and Fleet Foxes, MGMT and OK GO, the Star Warstheme, and Nintendo medleys.

I give you “Pavlov’s Dogs Handbell Ensemble.” I’ve played with my ladies for seven years. We’ve opened for Canadian rock stars and played the song from Scott Pilgrim on the same stage as the band plays it in the movie. We’ve played Disney songs in theatres, art gallery shows, and yes, even the occasional church gig. We’ve played a circus show and a carnival rave. It’s been a blast.

Playing handbells is hard, especially when you’re only six women playing three octaves. Each note is a different bell, and we play up to six or eight notes each. If there’s a key change, you have to potentially change every singing bell that you play. I play lower bells, but the smaller bells can, if you’re good, be played two in each hand (“four in hand”). It’s especially hard to play handbells if you have a broken elbow, but I’ve done it, as you can see in that video (with help). After I got married, my recessional was a recording of us playing my favourite bells piece (from the embedded video up top): Under Pressure.

I hope this brings some amusement to your day! We are all more than diabetes, and, fellow people with diabetes, I’d just like to say that you all ring my bell.

Prompt: Let's wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

Diabetes Blog Week 2017 Day 4: What Brings Me Down

We’re going to go back to a past blog week topic from 2014. 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 again to Scott for this 2014 topic.)

This is the second time this prompt has appeared, and it’s the second time my initial reaction has been to parody ELO’s “Don’t Bring Me Down.” This time, I actually did it.

When I go high, it’s like I’m out of my mind

I work so hard but still I’m wasting my time

It brings me down, diabetes down

They tell me do more, I’d rather lie on the floor,

D brings me down

I wanna go out and be with my friends

A hypo brings fun to a crashing end

It brings me down, diabetes down

I try to ignore, but it’s an internal war

D brings me down

Don’t bring me down, D don’t bring me down

Don’t bring me down, D don’t bring me down

You throw out all the things you used to know

MacGuyvering a dead pump on the road*

It brings me down, diabetes down

You rush for the door, before they close the drugstore

D brings me down

You’re causing way too many sleepless nights

I’ll only wake up if the dose is right

That brings me down, diabetes down

Can’t help but implore, what am I doing this for?

D brings me down

Don’t bring me down, D don’t bring me down

Don’t bring me down, D don’t bring me down

A balance shattered like a fragile glass

It’s not just figurative pain in the ass

That brings me down, diabetes down

A panic and bore, it’s just a gigantic chore

D brings me down

You’ve got me shakin’ – am I low, or just mad?

You’ve got me breakin’ the control that I had

It brings me down, diabetes down

Much as I abhor it I just have to endure

It brings me down!

*On Tuesday, I went to Kitchener, which is between 1-2 hours away by car depending on traffic, to rehearse for an upcoming performance with the Kitchener-Waterloo Symphony. My pump buzzed “low battery” on the way there, but I generally get between two days and a week between the first buzz and battery death. This time, though, it died only hours later, during rehearsal break! I had just eaten a brownie and was about to bolus for it. Normally I have an extra vial of insulin and a syringe, but I’d just put all my insulin in my pump cartridge, so I had to find something to act as a receptacle and squeeze out enough insulin from the cartridge to slurp up with a syringe. Then I was still an hour away from being done with rehearsal, between 1-2 hours away from being home, in an unfamiliar city where most things were closed, and with no car of my own (I don’t drive and I carpooled). I just had to tough it out and wait to get home. Talk about bringing me down – it was infuriating.

Diabetes Blog Week 2017 Day 3: The Blame Game

Prompt: The Blame Game - Wednesday 5/17

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

Honestly, I find the way this prompt is worded pretty disturbing! Maybe I’ve watched too much of Buffy and its ilk, but the thought of turning a person into a puppet makes me shudder. Forced support isn’t support: you’ve built a wall, sure, but it’s the wrong kind. Making someone say the words I want to hear, in its own way, would be just as bad as hearing blame and judgment. 

I’ve talked about this before, but the most memorable comment I’ve ever heard (in a bad way) was when my endocrinologist, frustrated at young adult me, who was academically stellar and in every other way responsible and successful but completely incapable of staying in appropriate blood glucose range, exclaimed dismissively, “I don’t understand why you can’t just DO THIS.” 

Then, as the insensitive cherry on top of the can-you-eat-that sundae, instead of suggesting that the emotional issues surrounding diabetes are intense and highly charged and asking if I’d like to talk to someone, she used the possibility of counseling as a threat - shape up, or I’ll throw you to the psychologists. It was awesome, because it forever cemented a connection between failing and counseling in my head, which meant younger me was never going to talk to a professional ever, not even if she needed it.

The thing is? My endocrinologist does not have diabetes, so no, she doesn’t understand, not really. But there’s a way to use that phrase well, and a way to use it poorly.

“I don’t understand” and “I don’t know” are some of the most powerful tools we have, when used properly. They invite learning, teaching. They ask for help. I don’t understand, but I want to. So show me, and I will try. Those are the words, the connotations, I would like to hear.

As a professor, I have many types of students, but I can classify and divide them into two main categories: those who don’t know something and recognize it’s their responsibility (and privilege) to learn it, and those who don’t know something and think it’s my (or the other person’s) fault that they don’t know it yet. There are a lot of things I don’t know. There are a lot of experiences I’ve never had, and can never have. It is not the person who has had the experience’s responsibility to educate me, though if he or she wants to, I am eager to listen. Most of the time, if that’s truly the case, the other person will be excited to teach.

“I don’t know why you can’t just DO THIS” is not the former type of student, it’s the latter. It says “I don’t understand you and I don’t care to try, because you’re not fitting into the current rubric of success.” It says, “how can you succeed at exams and fail at blood tests?” It says, “it is your responsibility to do better to make me feel more comfortable.”

In schools, they sometimes have educational workshops against drinking and driving. People put on helmets that distort their vision and reflexes, and attempt to walk in a straight line. Special glasses make driving nearly impossible. We need that for everyone who interacts with a person with diabetes (which is essentially everyone). Sometimes CDEs who aren’t diabetic are required to wear a pump for a week with a saline solution. Something like that. Mostly I’d want to make them truly understand; briefly feel what a very high and very low blood sugar feel like. Experience fluctuations throughout a day. The problem is that there’s this unknowable spark, that emotional value that can’t fully come through when you know you can take the machine off and never have to think of it again. But it might be a good start.

How do you make someone come to the chilling realization that this is it, 24/7, for the rest of your life?

I don’t know.

I now have a good relationship with my same endocrinologist, possibly because my A1cs now hover around 7 instead of 10 or 12, but I’m used to people liking me for being good. (I will be fair and say that I genuinely believe she is interested in me as a human being, and often very kind.) What we all need, though, is someone who likes us, supports us, when we’re not good. Who understands that there is much left to learn, and that you can’t categorize failure and success in a simple metric. 

Sometimes success, after all, is as simple as admitting you don’t know.

Diabetes Blog Week 2017 Day 2: The Cost of a Chronic Illness

Diabetes has an opportunity cost.

When I picked up my US Social Security card in 2003, at the start of my undergrad, in the same government office with me was a man who was arguing with a woman behind the counter. I didn’t get all of it, but I did get that he couldn’t afford his insulin, and that he was very upset, even crying. I wish I had spoken up then, but I was 18, didn’t want anyone to know I had diabetes, and was with my parents. I felt helpless watching him.

I am a dual citizen of Canada and the United States. I grew up in Toronto but did seven years of higher education at Princeton and Columbia. Many of my best contacts are in the States. My husband is from the States (though he is now a dual citizen). I enjoyed many of the conveniences of the States, but once I was through with higher education (and its associated health plan), I felt I only really had one choice: I was going to move back to Canada. Now, diabetes is not the only reason I moved home. I love my home city. I have a huge network of friends, and I am very close to my immediate family.

But the basic fact is, in 2010, with health care costly and nowhere near assured in the US, I was too scared to stay. I am lucky I had the option to go. If Canada has an opportunity brain drain, the US has a healthcare brain drain, because I took my two fancy US Ivy League degrees, and I fled.

Diabetes has a monetary cost.

When the ACA passed, I was in Canada, but I was following its progress closely. I turned to my husband with tears running down my face because, for a brief moment, I felt like the country had decided I was worthy of life. I said, "we might be able to live in America again someday!" By we, I meant me and my husband specifically, but also “we” in a general sense: we might all be able to live in that idealized nation that believes everyone has a right to life and freedom and happiness. 

I don’t think that’s coming any time soon now.

In Canada, things are not perfect. Medication is not covered, and can be expensive. My work contract keeps changing, which means sometimes I have prescription insurance and sometimes I don’t. The prices are still lower. My husband has insurance, which means that it doesn’t matter anymore - as long as he stays with his employer. However, my doctors’ visits, multiple specialists, surgeries: they haven’t cost me a thing. If I have to go in three times a week for a one-minute treatment for a diabetes-related autoimmune skin condition? That’s free, instead of the thousand bucks per visit they tried to charge in the US (thank goodness for Columbia University’s health plan). 

In Ontario, the current government is working on a Pharmacare plan, and I hope they wind up with something good. Why?

Diabetes has a physical cost.

It’s not right that, even in Canada, I could get an injection of insulin in a hospital for free, but it costs me to take some home so I can live and NOT end up in the hospital. It’s not right that the government is currently paying for all the plastic parts of my pump supplies, but won’t pay for the insulin inside which is actually the only part of the contraption that I need to stay alive. It’s not right that these things can lead to a person, even in Canada, rationing insulin, and that preventive steps aren’t covered the same way as landing in emergency is, because covering the former helps to prevent the latter. It helps prevent these physical costs. It can’t prevent all of them, but overall, reducing the monetary cost helps to reduce the physical cost.

Diabetes has an emotional cost.

It’s exhausting to have to consistently advocate for your right to exist as a human being and not go into debt and not have a subsistence-based existence where you choose between things like eating and being able to metabolize what you eat, living in an apartment or living an actual life, simply because you do not produce a hormone. 

This is not currently my situation, nor is it likely to be. I come from a position of relative comfort and privilege. I was in that Social Security office fourteen years ago, not to beg for the ability to afford my insulin and not die, but to get my documentation so that I could go to my Ivy League college. 

I felt for that man, and I will never forget him. I wonder if he is still alive. 

I wish I could do more. I know I don’t do enough. I read the horror stories. I donate money. I sign the petitions. I call the reps. 

But it feels so unfair that a group of people who are dealing with opportunity, monetary, and physical costs also have the emotional cost of convincing other, more privileged people, who can do something to reduce these costs, that they deserve life.

In the words of playwright Tony Kushner, we all deserve “More Life.” 

Me. You. The man in the Social Security office. The woman asking for change on the street. The throngs asking for change in a country’s ethos.

More life, and less cost.

Prompt: The Cost of a Chronic Illness - Tuesday 5/16
Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

Diabetes Blog Week 2017 Day 1: Diabetes and the Unexpected

Welcome to Diabetes Blog Week! It's what got me into writing about diabetes (and, mostly, is the only reason I ever update this blog now, but I've met some great people because of it).

Today's Prompt: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

“Tell me what your blood sugars are like on a typical day.” “How is your control, generally?”

This is always my least favourite type of question at a doctor’s appointment, because I’m not sure if I’ve ever had a “typical” day in my life.

To get to diabetes and the unexpected, I have to go through life and the unexpected first.

There are many people whose days are relatively predictable. They have a routine. They wake up, they go to work, they come home, maybe exercise, relax, eat dinner, go to bed, repeat. Sometimes I envy those people. 

I’m a professor. My schedule is different every semester, and sometimes changes during the semester. One day I’ll start teaching at 8:30; one day I start at 3:30. Often I learn my semester schedule less than a week before it starts. Some days I have a two-hour class, and some days I have seven or eight hours without a break. I teach at four different campuses (not all every semester, but often three of them), sometimes two in the same day. What’s predictability?

I’m a musician. I sing; I play handbells (not at the same time). I’m a part of two or three groups at any given time, which means 2-3 rehearsals a week and random gigs. When I’m performing with the Toronto Symphony, or, this month, the Kitchener-Waterloo Symphony, often between rehearsals and performances, it can be 4-6 days a week (this month, I have to get to and from Kitchener, which is far from Toronto, many, many times). This is on top of work.

I’m a freelance writer and theatre reviewer. I review at least once every two weeks and write a books article every week. That’s another night/day of unpredictability.

I’m a dramaturg and script doctor; I work on plays and theatre festivals (for example, a weekend festival in Prince Edward County the weekend before my grades for 150 students were due). This has no predictability whatsoever. I might be working on five plays, or none. When the Fringe Festival is on, all bets are off; last year I saw 46 plays in 12 days, reviewing seven of them in the first three days.

I have a wonderfully active social life. This weekend there were two parties, two shows with friends, a dinner with a friend and the art museum and dinner with my parents and husband for Mother’s Day. This coming week I am out every single night, either at rehearsal, trivia, my friend’s burlesque show, other plays, other gatherings. I’m not sure I have a night of May where I’m not doing something. This year, the reunions and weddings are thick and fast on the ground. I have four weddings in four different states in two months.

I wouldn’t change this life for anything. Routine isn’t for me. I go to bed at weird hours, like 2-4am. I don’t sleep too much. I love how much I get to do. What’s the point of living in Toronto if you don’t use its resources to the fullest? But what it all means is that, when trying to juggle all of this AND diabetes, the only thing I can really predict is that life is unpredictable.

It’s hell starting medications, because I try to wait for an “uneventful” week, and it never comes. I have a newish med that I haven’t started (it’s not a life-threatening issue or even a serious one) because I have to take it at approximately the same time each day and it has a sedating effect, and I don’t know when that “same time” will possibly be. I worry about taking a sedating medication even at 2am. What if I’m still out? What if I have to be up until 4am grading? 

It’s tough monitoring myself when I have a day with shows, particularly when I’m performing. Going low or extremely high on stage can be a nightmare. I’ve had site failures midway through a concert. I’ve gone low on stage with the symphony, despite my best monitoring efforts, and I still had to perform and then sweat it out until the concert was over. Two thousand people in the audience - what am I going to do? Start eating? Say “excuse me, please stop the concert?” My alarms are set to vibrate against the advice of my CDE because I am in performance spaces so much, between the classroom, the concert hall, the theatre, and I’m not going to interrupt everyone’s experience that they’ve worked so hard to create or attend. (I know my health should come first, but I just can’t be that person).

I do my very best to bring an extra everything, but sometimes things go awry, and I’m staring down an eight-hour teaching day with ten units of insulin. I try hard to be in tune with how I’m feeling, and test often. It’s still unpredictable.

My favourite unpredictable event of late: losing my pump clip at airport security right before a week-long Caribbean cruise, and having only dresses with no internal pockets. I am an improvisational wizard sometimes; I bought a money belt to clip around my waist instead, and I actually kind of love carrying my pump in it.

In any case, I wish an unpredictable life and an unpredictable disease came together to make predictability. But, just like two wrongs make a right, they don’t. That’s okay.

My life is unpredictable, but it’s also wonderful. I think of how much easier things would be if I did the same thing, at the same food, went to the same place every day. Simpler. Probably better control. I would have that “typical day.”

It would be awful.