Skip to content

Posts tagged ‘diabetes’

Keeping it Bubbly Without Bubbling Over.

Yesterday, I was at the JDRF TypeOneNation event in Dallas (big thank you to Tandem Diabetes for sponsoring my attendance in full – more on that disclosure here), and I did two presentations.

Despite only seeing a circuit of airport/shuttle/hotel/shuttle/airport, Dallas was fun.

During my talk on “Life After Diagnosis,” a family asked about my views on diabetes, citing that I seemed to have a lot of energy.  (Little do they know that coffee is to blame.  A real one; my first in several months.  And it was lovely and made my brain go hey I still work – jump up and doooooown!)

“You seem very bubbly, and very positive about your diabetes. My daughter hears a lot about people who are very positive and upbeat about their diabetes. She is not there yet. How can we help her get there?”

That’s a loaded question, because it runs on the assumption that once you hit a moment of diabetes acceptance, you stay there. This September, I’ll mark the 30 year point with type 1 diabetes, and I’ve had more than a few run-ins with diabetes burnout, episodes of less-than-optimal, and emotional struggles with diabetes. Sometimes that’s not properly conveyed here on my website, and less-so in person, because I don’t like to write about struggling too often. It’s not a matter of being ashamed of the struggle, but more that chronicling emotional stress sometimes adds to emotional stress.

Think about it: if you’re feeling crumbs-ish about diabetes, and you make a list of reasons why you feel crumby about diabetes, now you have this list of crumbs-inducing stuff staring you in the face. A bulleted list of reasons you should feel like garbage.  That kind of reinforcement is not my jam.

For me, itemizing my grief doesn’t work. What does, at least for now, is identifying what’s bugging me and then embracing the opposite of that bug.  In the past, I’ve actively hated the process of checking my blood sugar.  Oddly enough, a new meter case was enough to trick my brain into being less frigging angry about it.  When my blood sugars were tanking after exercising and frustrations were mounting, my husband helped me focus on the benefits of the exercise itself, even if I was consuming a juice box (or four) after a specific workout.  Focusing on small victories made dealing with some of the bigger bullshit moments easier.

And sometimes I’ve just needed time to fill back up.

Diabetes “acceptance” isn’t a staircase, where you achieve a mental milestone and continue to work from that point. If anything, the emotional aspects of diabetes are more like an escalator that sometimes stalls out and becomes stairs, which then sometimes collapse entirely to become a slide backwards. I’m not sure what’s at the top, what the apex of acceptance might be for other people, but for me, I picture it as feeling comfortable taking a few steps forward at times, knowing full well I might stumble back.

The point is, there’s always something.  People aren’t always honest about what they’re struggling with, which can paint a perception of achievable diabetes perfection, which is absolutely not a thing.  I’m not sure how to advise someone to “get there,” but instead assure them that “there” looks different for everyone touched by diabetes.  Community, and connecting with others who understand on the most nuanced of levels, helps.   Diabetes is a journey.  It’s a pain in the butt.  It’s a constantly needy little thing that shouts often and loudly at times, whispers quietly and pokes me with an unraveled paper clip at others.

But at the end of the day, diabetes is ours to wrangle in, and on our worst days, the diabetes community helps us to hog-tie that shit.

(Also picturing comfortable pillows and one extremely fluffy and endearingly cross-eyed/double-pawed kitten at the top of this staircase, and maybe a giant iced coffee that I can stick my whole face into and then sprout gills to be able to breathe under coffee.  To be specific.)

Kitchen Poetry Slam.

Revisiting an older poetry post, recorded in my kitchen with a healthy dose of a Rhode Island accent.

 

Because we are resilient, damn it.

 

 

Prebolusing the Sh*t Out of Things.

Now, at the halfway mark of my pregnancy, insulin resistance is becoming a bit of a thing, and is going to progress into an Actual Thing as the weeks go on, which happened last time and I’m prepared for but it still a bit whoa and this sentence is a run-on.

Which means that basal rates are creeping up ever-so-slightly (my pre-pregnancy basal total was around 13u and I’m now up to 16.2u) and my insulin:carb ratios starting to dance (pre-pregnacy was 1:10, am now 1:9 … except lunch is 1:12 because why would things be consistent?).  When I first found out I was pregnant, my endocrinologist told me that post-prandials contribute most to macrosomia, so keeping my post-meal blood sugars as in-range as possible would help mitigate that risk.  (But let’s take a look at the risk list … pre-existing diabetes?  Check.  Over 35?  Check.  Previous pregnancies?  Check.  Having a boy?  Check.  Cool.)

The plan?  Actively and aggressively pre-bolusing the shit out of my meals.

This sounds like an excellent plan, in a perfect world.  Pre-bolusing works well for me when the bolus is delivered at least 20 minutes before eating, the meal is properly carb-counted, and nothing delays the process of eating.  But one monkey wrench in that process can muck the whole mess up.

Pre-bolusing can feel spooky, like I’m tempting fate and inviting a low.  Not doing it is like opening the door for a high.  The middle ground could use some xanax.

Over the last few weeks, my pre-boluses have been executed with precision.  A few fistfuls of jellybeans have worked their way into rotation when I’ve bolused too early, but that’s to be expected.  The temp basal option on the t:slim is stupidly easy to employ, so sometimes I use a temp basal to help back me out of a mild low, but overall, I’ve seen my post-prandials come down nicely and hopefully my ultrasounds continue to show a very boring, predictable pregnancy progression.

Makes meals interesting, though.  They’ve become a game of roulette.

“Do you think we’ll get seated right away?”  Or, “I forgot to pre-heat the oven and now dinner is going to be 15 minutes later than I thought.”  Or, “Fuck.  I forgot to eat!”

I’m pre-bolusing all over the place.  Usually it works fine.  Sometimes I end up wicked low.  But every time, it’s in effort to keep my post-prandials from causing chaos in my kid.

Guest Post: Diabetes at Work.

When I asked folks in the DOC if they’d be willing to lend their voices and perspectives for a guest blog post, I was excited to hear from Susannah (aka @bessiebelle on Instagram and Twitter).  Susannah grew up in South Australia and is now working as a lawyer in Cambridge, in the UK.  She was diagnosed with type 1 diabetes during the course of her last year of high school (2000) and is currently using a Dexcom with her Animas Vibe insulin pump.  

Today, she’s taking over SUM to talk about diabetes in the work place, and how to handle the moments when discretion is preferred but diabetes still needs attention, and she’s looking from tips from our community on handling diabetes in the workplace.

  *   *   *

A significant aspect of my life with diabetes which I often feel is ignored is how it fits into my career. Diabetes goes with me to work everyday and has seen the highs (completing deals) and lows (being at work at 2am) of work and as well as sugar!

When I started to write this post about working life with diabetes I was armed with a list of anecdotes but I didn’t expect life to serve up another example of when the two worlds collide. One of the frustrating things that any diabetic knows is it can always throw you something unexpected.

After a seemingly average Sunday afternoon gym session Monday morning last week saw me battling a hypo that just wouldn’t respond (to glucose tabs, reduced basal plus bread with strawberry jam for good measure). With heart still racing and a foggy brain at 9am I emailed my boss to let him know I was somewhat delayed but I’d be in soon. Moments like this make me glad that I’ve been open with my boss about being a type 1 diabetic but also make me anxious that I will be judged as less capable because of it.

Am I the only one who feels like that?

The emotional side of diabetes creeps in too easily. After an experience like that morning I’m left worried that I’ll be judged because of it. Being late on Monday morning is the least of it… We all know there are the doctors’ appointments (6 monthly checks, annual reviews, eye checks, and other specialists – always longer than expected and involving long times in waiting rooms), hypos setting you back (sometimes only a few minutes, other times for much longer), pump sites pulled out causing hassle and even spurting fingers resulting in blood stained shirts! Some of these take up more time than others but they all intrude on what might otherwise be a normal day in the office. Something that I’m acutely reminded of when I’m filling in my 7 hours of 6 minute units of time each day.

I fear hypos at work more than anywhere else. I don’t want to explain why I’m sweating at my desk like I’ve been for a run or to be faced by a deadline but struggling to gather my thoughts clearly. I don’t feel any more comfortable in this situation now than I did when I first started work as a law clerk 10 years ago. Luckily, for many years I had the luxury of my own office and the ability to shut the door gave a level of privacy when required. Recently, I moved to an open plan firm and I am having to reconsider many things I took for granted with a (glass) door… pump site changes at my desk are a thing of the past (cue a few panicked mornings hastily inserting a new site and refilling so that I won’t have to later). I’ve been lucky not to ever have a hypo in a meeting, but this is not without taking care. Meetings with clients or all parties to negotiate a document are a balancing act of starting the meeting high enough not to crash but not so high that I feel sluggish. (and that’s not considering the blood sugar spikes from stress).

Thankfully there are the comical moments – taking a draft document to my boss and having to explain the red smudges on the print out (after 15 years it’s fairly easy to squeeze blood from my favourite fingers… I tested as I typed this and got blood on cue!); being in a meeting with the same boss and having my pump alarm go off – after a quizzical expression from a colleague my boss calmly commented “Don’t worry, Susannah’s bra is ringing!” Needless to say my pump alarms are strictly on vibrate these days.

There are moments that call for advocacy whether I feel like it or not. In a previous job I was surprised when HR requested that I remove my spare insulin from the work fridge or alternatively hide it in a container so other people didn’t have to worry about ‘contamination’. Why?! To this day I haven’t quite figured out who raised the concern (or why?!) but I defiantly ignored that request (with colleagues’ support) and also politely explained to HR that it was not a risk to anyone’s sandwich.

I’m always interested to hear how others handle disclosure with their employers (as well as see photos of their diabetes supplies stashed in their desk), and am always surprised by people who manage not to disclose it. I’m yet to perfect my ‘I’m busy having a hypo so please don’t ask me a question face’ so disclosure is what feels best for me. It may not be for someone else (YDMV). In contemplating my days in the office I realise I have it pretty easy if the worst is getting blood on a contract! I’m in awe of the many people who manage their diabetes while being responsible for others (whether a mother, teacher, nurse or doctor, just to list a few).

How do you handle your diabetes at work? Any tips on how to stress less?

5 Worst Things to Consume If You Have Diabetes.

Today is World Health Day and the focus is on diabetes.  Every media outlet in the world is picking up on this health story and twisting it just so, highlighting misconceptions aplenty and feeding the stigma about diabetes.  Messages get muddled and broken down into clickbait headlines that sometimes hurt our community more than they educate.

What are the five worst things to consume if you have diabetes? HINT: This is not a list of foods.  

  1. Misconceptions. Don’t consume them.  There is a public perception about diabetes as a whole and about the individual types – don’t let society’s misinformed views shape your own.
  2. Other people’s misunderstandings. Don’t consume them.  Don’t let people’s ignorance about diabetes ruin your day.  Correct their information and move on.
  3. Misinformed messages from the media. Don’t consume them.  Address and correct articles that perpetuate stereotypes and misinformation. We’ll never be happy, as a community, with a public health campaign, but we can take steps to help shape it in a way that feels right.  If not us, who?
  4. Anger and hatred towards our community. Don’t consume it.  People get angry about diabetes and the people who have it are often the target of blame, shame, and disgust.  Don’t let anger infiltrate our community.  We’re better than that.
  5. Stigma. Don’t consume it.  Don’t swallow it and don’t let it define you.  Taking care of your health is nothing to be ashamed of, so wear your efforts towards good health with pride.


What do I wish people knew about diabetes?  This:  

There is more than one kind of diabetes.  This isn’t a knock on my type 2 and gestational diabetes friends, but definitely a knock on society’s perceptions at large.  People have one musty, old perception of what diabetes looks like, and it’s always someone older, heavier, and lazy.  Would they be surprised to meet our fit type 2 friends, or the 20 year old gestational PWD?  Or a “juvenile diabetic” who isn’t eight years old? Or any of our community friends? Diabetes doesn’t have “a look.”

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I’m not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we’re hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don’t feel alone.  Diabetes isn’t just mine.  It belongs to everyone who cares about me.

Diabetes isn’t just a physiological disease.  Mental health matters when it comes to diabetes management. It’s not just a question of blood sugar levels and insulin supplementation.  It’s about managing the emotional output that comes as part of life with a chronic illness.  It’s about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it’s a short life or a very long one.

Diabetes isn’t easy.  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  “You just wear the pump, test your blood sugar, and watch your diet and you’ll be fine, right?”  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes. It’s never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn’t.

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There’s no winning combination and no “right” way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin – this doesn’t necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn’t work for everyone, and neither do certain medications.  What works for you may not work for everyone. It’s important to remember that this disease, like life, doesn’t have a predictable path, so there are plenty of “right’ ways to handle it.

Just because we don’t look sick doesn’t mean we don’t deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn’t.  There’s no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn’t worth their attention.

We deserve, we fight for, and we advocate for a better life, better health outcomes, … we deserve a fighting chance for a cure.

Follow

Get every new post delivered to your Inbox

Join other followers