Diabetes Blog Week 2016 Day 5: Tips and Tricks

Click for the Tips and Tricks - Friday 5/20 Link List.
Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

Today’s topic is “Diabetes tricks and tips.” I’m not sure I have many new tricks for you (something something can’t teach an old PWD new tricks) that I didn’t use up the last time Diabetes Blog Week used this prompt.

I can say that I’ve downgraded to a smaller purse than ever before by separating my meter remote from its casing and just packing a lancing device, bottle of test strips, tube of glucose tablets, and the remote itself into the purse. In my change and card purse sit a vial of insulin, an empty cartridge, plunger and needle, and a syringe for emergencies. Other than having to change the syringe out more often because the numbers sometimes rub off, this makes everything much more compact. Seriously, I have no idea how I’m able to carry a purse that qualifies as “cute” and “small” rather than “boat-sized,” but it works for me.

Anyway, the best “trick” I have for diabetes is actually this:

Just keep going.

Doesn’t seem much like a trick, I guess, but it’s the best thing I know to do.

Bad reading? Just keep going. There will be another million readings.

Skipped exercise today? Go tomorrow. Just keep going.

Low blood sugar? Treat it and keep going. My blood sugar is low right now, and I’m writing three articles simultaneously while that’s happening. Three! Of course, this doesn’t mean you can’t sit or lie down for a while if you feel like crap. Taking time for yourself is one way to keep going.

Despairing for a cure? Don’t wait for it to do something. Keep going.

Uncaring doctor? Keep going. Keep asking the important questions. Keep pressing on for the sake of your health. If it’s possible to switch to a better doctor, that’s another way to keep going.

Can’t figure out the best treatment regimen? Keep going. Keep trying new things. Stuck in a rut? Keep going. It’s the only way to get out.

Remember that not everyone’s ability or definition of “keep going” is the same, but whatever it means to you, keep going. This may seem vague and undefined, but in a world where diabetes often leaves us powerless, our greatest power is to define for ourselves what our lives will mean and what we'll do with them.

If there’s one thing I’ve learned from being part of this big, bold, and beautiful community, it’s that we all keep going. Even when we’re burned out and frustrated and depressed and despairing. Even if we don’t do everything exactly the way someone else says we should. Even if it’s using the smallest of steps. I love you all for it. I think we deserve that love.

Just keep going. It’s a tip, it’s a trick; it’s all we can do.

Diabetes Blog Week Day 4: The Healthcare Experience

Click for the The Healthcare Experience - Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

With today's topic, "The Healthcare Experience," I could say something about my years-long battle with my endocrinologist until we reached a pleasant détente (mostly when I got better at management, rising to meet standards). In fact, though, my “Understanding the Endo” piece from the other year gave me a certain sense of closure on the whole thing, as I tried to, and eventually did, see the world through her eyes. Now, my endo actually commiserates with me about my situation, and our visits are relatively pleasant.  

However, there is one line from a visit from my college years that I will never forget or get closure on. I have said it many times, but that’s because the line, delivered to me in all seriousness and frustration, is forever stuck in my memory: “I don’t know why you can’t just do this!” If there’s a reason to write my blog, it’s to show that, while we can and often will do anything, achieve anything, there’s no “just” about it. 

One of the pieces of the healthcare experience is dealing with health insurance. Let me show you why “just” doesn’t cover it, even in this detail that shouldn’t even be a part of our health maintenance worries. 

Where I work, depending on my course schedule, semester by semester, I am either in the union or not; I either have health insurance, or I don’t. I do not find out what contract I am given (or if I will be given one) until as late as the last day of the last week of the previous semester. My schedule is subject to change, and if I am given an extra class or if a class is removed from my schedule in the first or second week of the semester, I can lose health insurance on a moment’s notice. If I teach 7-12 course hours a week, I have health insurance. If I teach 13-15+ hours, I lose my union protection and my health insurance. That’s right; if I am given a more difficult teaching schedule (a “sessional”) – I lose health insurance. I am also paid less per hour, so I may make less while teaching more and also not having health insurance. (There is a limit to how many of these sessional contracts I can be given in a certain period of time.) I have no control over my course schedule or contract type.

By the time I find out about losing my insurance, it is often too late to add myself to my husband’s insurance for the month (but thank goodness right now that’s even an option at all) because my insurance is paid on the first of the month and his is paid during the previous month.

Does your brain hurt yet? I have been going through this dance every four months for six years. It has, paradoxically, nothing to do with my diabetes management, but everything to do with my ability to manage my diabetes and my mental health/stress.

This is not meant to bash any specific employer; many institutions work this way, but those are the facts. I am grateful for employment in my field. I like working where I work. I love my subject and I love teaching; I’m quite good at it, and nearly all of my students love me. I put my heart and soul into my teaching, and I spend far, far more time on each course than the “course hours” would tell you – each course hour is probably at least 4-5 real hours. 

I also live in Canada, where when I snapped my elbow in half, I walked away with a $65 charge for a fibreglass cast replacement, $20 for a sling, and a few pain medications (the latter, and the physiotherapy, I did need insurance for). The initial assessment and two surgeries were free, instead of being literally thousands of dollars like they would be if I lived across the border in the United States (I am a dual citizen and lived in the States for school during the first seven years of my adult life. Until healthcare there regains some sort of sanity, I do not think I can return). 

I take a lot of expensive medication (diabetes is hugely expensive), so insurance is still a necessity. I receive government help (THANK YOU) for my pump supplies, but it doesn’t cover insulin or any actual medication. There are a million caveats and appendices. Insulin is free if you’re receiving it as treatment in a hospital. Self-care? You’re on your own. The plastic parts of the pump are covered by the Assistive Devices Program. The life-giving insulin that is the raison d’etre for the entire plethora of plastic? You’re on your own. None of it makes a lot of sense, which makes it the perfect companion to diabetes management, which also does not make a lot of sense.

The teaching situation is a lot like diabetes management. I also put my heart and soul into my management, and the number of decisions and moments I spend thinking about it are at least 4-5x the measurements or moments anyone is aware of. It’s unpredictable, and it can change at a moment’s notice. A number of factors can lead to a sudden addition in my “course load.” I don’t have all the information I need in a timely enough fashion to make a lot of very important decisions. 

I find out some important numbers every 3-4 months, but they might not have any bearing on where I am four months from then. Too much management may have diminishing returns. Too little management will almost assuredly go poorly. It’s off-schedule and capricious, but if you can get it right, it sings.

The healthcare experience should do its best not to add further layers of difficulty to an experience that is already difficult. The healthcare experience surrounding our own management should be an invisibly supportive hand, a perfect weather day where you can’t feel the weather, rather than a gale force we have to walk into. 

In the cartoon series Futurama, the robot Bender finds himself filling the role of God for a tiny civilization. A more powerful entity tells him, “When you do things right, people won’t be sure you’ve done anything at all.” I think that’s where the “just” comes in. People notice mistakes much more readily than they notice achievements, because achievements in this case “merely” equal stability and “normalcy.” We notice our frustrations with the healthcare system more than we notice when things go right, and our healthcare providers notice when we’re out of range more than our hard work to keep things steady. 

I just wish it didn’t have to be that way. 

Diabetes Blog Week 2016 Day 3: Language and Diabetes

Click for the Language and Diabetes - Wednesday 5/18 Link List.
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

I’m an English professor, so my business is language. I spend a lot of my time teaching people how the words we use shape others’ perceptions of us and our message.

There are a lot of words that are associated with diabetes. Some are explicit, some implicit. I think that most of us are pretty good at avoiding the explicitly harmful words; it’s the implicit associations we might want to think about. 

Well, most of us in the Diabetes Online Community are good at avoiding the explicitly hateful words. Sometimes it’s hard to think about implicit associations when other people are loudly calling your tribe fat, lazy, healthcare sponges, irresponsible, and more ignorant and terrible terms that belie a complete ignorance of the situation and a fear of being associated with it. I think fear goes a long way toward the assignation of moral value to health; if we’re “good,” we won’t get the nasty disease. It ties into our culture’s preoccupation with fairness in a distinctly unfair universe.

I wrote a post quite recently on why I’m not a big fan of the term “diabetes sufferer” - it rubs me the wrong way, because it gives diabetes precedence over me and suggests I’m only here to suffer through it. (In my post, I said I vastly preferred being called The Girl Who Lived, but I realize that’s a bit long and a copyright infringement.)

If I had to choose between the more normal terms of address, I prefer the idea of the term Person With Diabetes to diabetic, due to its deliberate attempt to put the person first. Sometimes, though, we tend to shorthand to save space, especially via Twitter - it’s easier to type “diabetic” than “Person with diabetes.” You can say PWD, but if the reader isn’t familiar with the lingo, you might lose your audience. On the other hand, this reduces a person to a single adjective, and adjective-as-noun, which in many cases cringeworthy.

My husband’s major involved linguistics, and from him I got the concept of prescriptivism vs. descriptivism. As I understand it, a prescriptivist believes that there are rules to language, and if they are violated, the communicator is wrong. A descriptivist believes that you cannot be wrong speaking your own language (writing is a bit of a different matter) and as long as your message is understood, you are correct. I’m more inclined to agree with the latter, though there are many rules of written grammar that I have a tendency to stick to rather slavishly (when you spend your life grading essays and see a lot of mangled phrases, that happens). On the other hand, when we choose words “incorrectly,” perhaps a basic meaning is getting communicated, and technically that means it’s not wrong, per se, but is the exact, shaded message the one being communicated?

I’ve had some experience with having to rename a “final exam” to a “final test,” because the former was deemed too stressful for the participants. Regardless of my feelings about this, it reminds me of the language we use when we figure out the level of our blood sugar. When we talk about “checking” vs. “testing” our blood glucose levels, the former implies something a little more informal, a check-in, to reassure oneself, to figure out what one is feeling and why. Checking sounds friendly. “I’m just checking to make sure you’re all right.” A test is something you can pass or fail, that more coldly reflects on you as a person. 

Just like my students may have numerous disadvantages in writing a test, many of which are largely outside of their control (language of birth, missed cultural references, poverty or having to work a full-time job to stay in school), many of these “tested” factors are out of our control when it comes to the meter reading. Does it bother me on a daily basis? No. Does it add an implicit moral value to something that should purely be informational, that leads many people (including teenaged me, who always aced every test except this) not to check in with themselves as often as they should? I think it does.

In her essay “Chicken-Hips,” the writer Catherine Pigott explores the different way she finds food to be labelled in her North American hometown, versus the village in Gambia where she spent a year teaching English in the late 1980s. “In Gambia, people don’t use words such as ‘cheating,’ ‘naughty,’ or ‘guilty’ when they talk about eating. The language of sin is not applied to food,” she writes. 

While much of this essay presents a romanticized view of the Africa she visits, removing moral language from eating is a philosophy that I would love to apply to the world of diabetes, particularly because, as we read in yesterday’s posts, the mental aspect of diabetes is huge, and so many of us deal with disordered eating. How can we judge ourselves as being good or bad when, for example, our hypoglycemic brains trick us into panicked eating, even if we’re not hungry, by literally sending us a message saying “you are dying. You will die if you don’t eat”?

Being a “good” or “bad” diabetic (person with diabetes) is fraught with problems. If you identify as “bad,” then what impetus is there to improve? You’re already catalogued. “Bad” can poorly impact mental health, or it can be used as an excuse to stop helping yourself. If your self-image hinges on being a “good” diabetic/PWD, then it’s harder to defend yourself against feelings of inadequacy that come with the inevitable, at least occasional, out-of-range or fluctuating blood sugar. 

The only thing that’s bad is the diabetes itself (I’m sure some would argue, but I think we can separate good that comes from diabetes from the actual condition, which is unpleasant). I’d avoid the word almost entirely, though, because even when you call diabetes bad, someone will use it to ask if you have the “bad” kind of diabetes. (Is there a good kind?)

Finally, my least-favourite word to cross the diabetes path is “noncompliant,” used to refer to a patient who isn’t 100% perfect so that the healthcare provider can abdicate responsibility to the patient instead of working with the patient’s life, particular situation, strengths, and limitations. You know, I get it. When I have 160 students, it’s incredibly easy to look at a student who isn’t getting things the way I’m teaching them, and label the student as a lost cause or a lazy seat-filler. But I have a responsibility to at least try. I can’t help every single one of my students, and yes, being met at least halfway makes a huge difference. I see it, though, as a failure of the system, of my resources, and ask if there’s anything I can do to make it better. 

“Noncompliant” brings up images of stubbornness, immaturity, handwavery, “there’s nothing we can do.” It sounds like something out of a BDSM novel, where the D stands for something different. We don’t really need “50 Shades of D.” If we think about diabetes as a war, or a game requiring specific strategies, I prefer to think of the noncompliant as “members of the passive resistance” or “conscientious objectors.”

Or maybe, just maybe, we can think of them, and ourselves, as people. 

Diabetes Blog Week 2016 Day 2: The Other Half of Diabetes

Click for the The Other Half of Diabetes - Tuesday 5/17 Link List.
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

For this prompt, I let my inner voices out. If you know me, you’ll know that my inner voices are usually singing, and more specifically, generally singing a song parody of some kind.

If you haven’t seen or heard of the musical Hamilton (about Founding Father Alexander Hamilton and his rivalry with Aaron Burr), well, watch the Tonys in June, where it’s assured to win a boatload of them. I’ve parodied Hamilton relentlessly over the last several months, but the layered meanings to My Shot in relation to diabetes were just too tempting to resist. (You can play this while you’re reading for the backing track. Even if you don’t read this post, give it a listen!)

Diabetes is a disease with an incredibly multifaceted mental impact, and all sorts of emotions -  positive, negative, and somewhere in between – get showcased on a daily basis. They all get a turn here.

MY SHOT

[DETERMINED ME]

I am not taking another shot

I am not taking another shot

You know my blood sugar’s funky

I’m tired and I’m hungry

But I’m not taking another shot

[ANGRY ME]

Got a busted pancreas, I can’t dial it

I don’t mean to whine, but fine

It makes me a bit violent

The trouble is I got a lot of brains

But no islets

I have to bolus just to survive

It’s harder to thrive

With no pilot

I’m a bunch of damaged goods

It isn’t curable

Trying to reach my goal

With my A1cs –uninsurable

Needs to be 6 but it’s always higher

My endo thinks that I’m a liar – inquire

‘Bout my burden, bout my disadvantage

Yes, it’s hard to manage

Got no self-control to brandish

Emotionally famished

I’m cheerin’, but years in, there’s no major change

Think I’m going to explode when asked if I’m out of range

I have the D-I-A-B-E-T-E-

S: yes, a mess, nothing’s free

It’s nice to see me run independently

Meanwhile, media’s misleading on us endlessly

Essentially, reporting relentlessly

Then the world turns around and starts blaming me

They ain’t never gonna see what we oversee

So there will be a revolution in the D-O-C

Enter me!

(I say in a Tweet or three)

Don’t be shocked when I tell you what’s bothering me

I won’t hide in my pride if it sets us free

Potentially, we’ll all talk eventually

And I am not taking another shot

I am not taking another shot

You know my blood sugar’s funky

I’m tired and I’m hungry

But I’m not taking another shot!

[HYPOGLYCEMIC ME]

I dream of life without the dreaded D

This chronic mess will be the death of me

Glucose-less – would you guess, I can’t be – glucose free?

When I’m low, I get a little bit panicky

(A sugar shot!)

[REBELLIOUS ME]

Yo, I’m your frustration speaking

And I guess control again is all that I’m seeking

I’m joining the rebellion ‘cause who cares if I test

Come on, give it a rest, I know I’ll never be best

Maybe I’ll skip a shot!

[DISILLUSIONED ME]

But we’ll never be truly free

Until we’re all cured and get to process that mentally

We can’t cry –we’ve run dry – promises, valiant

But they’re stagnant, actual progress absent

Take another shot!

[CASH-STRAPPED AND SCARED ME]

Hey I don’t mean to alarm ya

But we can’t really talk that way in front of Big Pharma

They give life, want us to give them the big bucks

Insurance is like Lady Luck

If you don’t have her, you get ------ [a shot!]

[HOPEFUL ME]

You guys, check what we got

Now there’s all this tech, years ago, we had squat

I think we’ve got a shot

We’re privileged, it’s our strong spot

We take our chances with advances and succeed a lot

What are the odds we’ll plod through without positive thought?

You know we’re taught that the job’s part mental, like it or not

But still I wonder, with ambition, how efficient simply wishing is?

Point me in position, tell me what our next new mission is!

Oh, am I talkin’ too loud?

Sometimes I get over-excited, a little bit proud

With a community of friends around

It’s hard to stay completely down - 

(Let’s get this me in front of a crowd!)

[DETERMINED ME]

And I am not taking another shot

I am not taking another shot

You know my blood sugar’s funky

I’m tired and I’m hungry

But I’m not taking another shot

Everybody sing: whoa…

Shout it to the rooftops

Rise up

When you’re stereotyped and teased, you rise up

Don’t doubt your expertise, you rise up

Autoimmunities gotta rise up

We’ll defeat this disease and rise up 

We’ll defeat this disease and rise up 

We’ll defeat this disease and rise up 

We’ll defeat this disease and rise up 

Rise up

[DEPRESSED ME]

I imagine death so much it feels more like a memory

When’s it gonna get me?

In my sleep? One last thing that’s bled from me?

We all see it coming – will we run, or have the strength to flee?

Just one more blue candle in a litany?

See, I never thought I’d live past twenty

Diagnosis: some get half as many

Ask anybody why we sometimes cheat and go sweet, reach for a treat

We’re all completely incomplete – that’s plenty

[DETERMINED ME]

Scratch that-

These are mental moments, not a movement

If we’re all coming together with

All our improvements

So, oppose us? We’re going to take a stand 

Speak out and reach out, hand held in black-flecked hand

And? Can we win our independence?

Once and for all defeat depression’s menace?

Or will the blood we shed beget an endless

Cycle of codependence with no hope of transcendence?

[ALL OF ME]

I know uniting is exhausting, uninviting

But please, just, between all this bleedin’ and fightin’

Complications are frightnin’

It’s hard to handle this financial situation!

Are we a Nation of D? Is disease our whole nation?

I’m past patiently waitin’! I’m passionately

Smashin’ passive advocatin’

We need action, not traction, creation!

We’re laughin’ in the face of nearly endless sorrow

We’ll win this day by thinkin’ of tomorrow

And I am not taking another shot

I am not taking another shot

You know my blood sugar’s funky

I’m tired and I’m hungry

But I’m not taking another shot

And I am not taking another shot

I am not taking another shot

You know my blood sugar’s funky

I’m tired and I’m hungry

But I’m not taking another shot

We’ve got to take this shot!

Rise up!

We’ve got to take this shot!

So we can not take yet another

Not take yet another

Shot!

Diabetes Blog Week 2016 Day 1: Message Monday

 

Welcome to the 7th annual Diabetes Blog Week! I've been participating for a few years, and this week, where we all write according to a specific prompt, is really what eased me in to blogging about diabetes - a subject which, prior to this, I didn't even want to talk about. But today's topic is all about talking, or rather, the message that talk sends:

Today’s topic is Message Monday.  Let's kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

Today’s Diabetes Blog Week topic is Message Monday. What sort of message are we trying to send to our readers?

In my college-level essay writing and analysis class, one of the first things I teach is authorial intent. Not just “what is the writer trying to achieve” (thesis, message) but “how is the writer trying to achieve it?” To determine this, one important aspect to examine is context. An essay is like a person: it has a brain (thesis), background (context), bones (structure), muscle (evidence), and skin, hair and presentation (language). It’s hard to be a person in a vacuum. You have to interact with others. That’s where context comes in, and that’s why context comes in early on – without knowing where the writer is coming from, and where the audience is coming from, you can’t really begin to deal with structure, evidence, or language.

One of the most popular mottos in the Diabetes Online Community is “YDMV” – Your Diabetes May Vary. It’s an interesting conundrum – the very thing that unites us – diabetes – is probably the thing in our lives that’s the most variable. What unites us is the commonality of our differences; we can never really know each other, but when it comes to diabetes, we can never fully know ourselves, even with the most sophisticated monitoring devices out there. Our bodies will do things that are complete and utter mysteries to us.

My blog, and my message, may vary (MMMV), just like my (and your) diabetes may vary. Sometimes I’m here to share stories about my past and how much connecting with other people has meant to me (it’s meant friendships, better numbers, and a sense of being able to control something in an ultimately uncontrollable universe).

Sometimes, I’m here to rant, because getting our frustrations off our chests, ranting and listening in turn, is one of the best ways to connect.

Sometimes it’s about sharing the hard-won victories, and telling the reader that all things are possible.

Sometimes, it’s about sharing the painful defeats, and sharing the pain; realizing that even outwardly successful people feel failure (as noted sage Jean-Luc Picard once said, “It is possible to commit no mistakes and still lose. That is not a weakness. That is life”).

Sometimes, like that last quotation might indicate, I’m here to make connections between what I’m feeling and the pop culture that many of us share. In my English class, we talk about analogies. One of the most difficult things to explain to another person is an intangible experience that they can’t fully share. You can explain, drily, what “diabetes” means; you can talk about having too much or too little glucose in the blood. It’s hard, though, to explain how it all feels, and a way to make that clearer is to reach into shared stories, from Shakespeare to Star Trek, Buffy to My Little Pony to The West Wing to The Phantom Tollbooth. Diabetes, with its chronic aspect, resists narrative arc and clarity, but we can shape it by likening it to more satisfying narratives. If we can’t ever collectively throw the ring into Mount Doom, we can at least walk the mountain path together.

Sometimes, I’m just here to entertain, by writing song parodies or creating Cards Against Diabetes (probably my biggest victory). We can complain about diabetes; we can share our pain and connect; we can analyze, but sometimes we just want to laugh.

So, just like Your Diabetes May Vary, My Message May Vary. Frustrating?  Unquantifiable? perhaps. Ultimately, though, it’s the infinite variability of life that makes it thrilling, and fascinating, and worth living, and I want to be here to share it with you.

-Ilana