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Posts from the ‘Diabetes and Emotions’ Category

It’s Just a Blood Sugar Check.

Checking my blood sugar takes less than 30 seconds.  Truly – upcapping the bottle of test strips, inserting the strip, pricking my finger tip, squeezing blood onto the absorption pad on the test strip, waiting the five second countdown of my meter to see the result up on the screen, and then taking the strip out and turning off the meter.

Thirty seconds.

Great.  No big deal.  Easy-peasy, and other rhyming phrases.

Let’s add in the responsive elements.  First, I anticipate the result.

Have you ever had go force yourself to check your blood sugar because you don’t want to see the result?  You know you’re high, so you want to avoid confirming it because seeing that number adds to the emotional failure quotient.  Have you ever forgone checking your blood sugar because you know you’re low, choosing fast-acting glucose sources over the 30 second confirmation routine?  The process of checking blood sugar isn’t just the installation of strip, pricking of finger.  There’s oftentimes an emotional hurdle that needs to be leapt over first, forcing me to attempt to view data as data instead of data as self-worth.

Then I perform the glucose check.

Then I respond mentally.  What is that number?  Do I have insulin on board?  Have I exercised in the last hour or two?  Am I planning on exercising?  Do I need to correct the number, either with food or insulin or exercise, to bring it into range?  Am I okay to leave it alone?

Normal questions like, “Am I hungry?” come to mind oddly late in this hierarchy.

But before the mental response, I respond emotionally.  A blood glucose result of any kind stirs up emotions, even when I try to immediately squash them.  There’s pride built into a 100 mg/dL.  Anxiety built into a 50 mg/dL.  Guilt baked right the fuck into a 300 mg/dL.  This is what keeps me from viewing my data as simply “data,” because every number represents something I’ve done or didn’t do … and I need to remind myself more that the thing I’m honestly not doing is making insulin.  The rest is a basket of beady variables that spill out unpredictably.

Checking my blood sugar is important because it gives me a view of where I’m at and helps me set the pace for where I’m going.  But it’s never “just a blood sugar check.”  It’s more than that.  There’s so much mental and emotional real estate dedicated to a 30 second process.

 

Diabetes Blog Week: The Other Half of Diabetes.

The Other Half of Diabetes:  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!)

(And for more on the topics of Diabetes Blog Week 2016, click here.)

“Just don’t eat sugar.”  “Take your pills.”
“Count your carbs.”  “Avoid most thrills.
“Be prepared.” ” Plan ahead.”

But this disease
Is in my head.

I can’t split up the thoughts around
My mental health and body sound.
Impossible to draw a line
Between “I’m sick” and feeling fine.
Just take my shot?  And avoid stress?
Beware of cake?  Test, don’t guess?
The list of things disease requires
Realigns my needs around desires.

“I need juice.”
“It might cause strife.”
But sometimes juice can save my life.

It’s hard to share
How much I see.
In every test,
Mortality.

Was seven then, when it arrived.
And since that day, I’ve stayed alive.
But not because
I’ve not had pie.
Or “just took shots.”
I try.
And try.

The mental health
I have achieved,
I fight for – harder? –
Than A1C.

The demands put on a chronic life
Exceed “just take your shot.”
We live beyond, we live out loud.
Mental health not an afterthought.

It’s not a disease where you just “just.”
It’s more than simply “do.”
But how I manage mental health
Will help me make it through.

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets 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.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

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.)

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