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.