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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,

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:

Diabetes Access Matters.

A running list of medications/devices I currently use throughout the day to attempt to manage my type 1 diabetes:

  • insulin pump (t:slim)
  • insulin pump supplies (cartridges, tubing, cannula)
  • glucose meter (Verio Sync)
  • glucose test strips (One Touch)
  • Humalog insulin vials
  • continuous glucose monitor (Dexcom G4 at the moment)
  • Toughpads (to prevent Dexcom adhesive reactions)
  • prenatal vitamin

And then there are the back-up items that need to be kept on-hand in case of a hiccup:

  • Labetalol blood pressure medication (that I am currently not taking, thanks to the miracles of pregnancy and exceedingly low blood pressure this round)
  • long-acting insulin (Levemir, for pump breaks or when the pump breaks)
  • Humalog insulin pens (to keep in my bag just in case)
  • glucose tabs
  • syringes

These are the health care professionals, diabetes-specific and otherwise, whose numbers I keep on file and see at least once a year:

  • endocrinologist
  • primary care physician
  • certified diabetes educator
  • high-risk OB/GYN (active now due to pregnancy)
  • regular OB/GYN (for non-pregnancy years)
  • cardiologist
  • hematologist
  • psychologist
  • dietician
  • dentist
  • podiatrist
  • dermatologist
  • retinal specialist
  • ophthalmologist

This gets pricey.  But I have health insurance.  And a job.  And emotional and financial support from my family to help fill in gaps where shit gets weird.  I don’t make use of everyone/everything on these lists every day, but my health is cumulatively best managed by all of these things being available.

Chronic illness keeps me busy.  Managing it well, even more so.

I’m trying to imagine one of the bricks being pulled out from this wall of attempted proactive care that I’ve spent 30 years building around myself.  What if I found out I was pregnant and didn’t have a  OB/GYN to help guide me through a high-risk pregnancy and complicated delivery?  Bad.  What if I needed to check my blood sugar seven times a day but my insurance company only covered three glucose meter strips per day?  Worse.  What if I needed insulin but didn’t have insurance coverage and didn’t have enough money to pay for my life-sustaining medication?  The end game there is effing terrifying.

Access is an issue.  I have been able to voice opinions about my diabetes devices because I’m lucky enough to have access to devices.  People talk a lot about “privilege” and sometimes people roll their eyes, thinking another buzzword is being deployed, but seriously, what does your medicine cabinet look like?  When I go into my closet, I have a whole shelf dedicated to boxes of insulin pump supplies and CGM sensors, enough lancets to check my glucose levels until I’m 113 years old (read: two boxes), and my fridge has a two month supply of Humalog sitting pretty in it.  I am fucking lucky.  To not acknowledge that is criminal.

I’ve been thinking about the United Healthcare / Medtronic stupidity, and am still very bothered by it.  It’s not that companies are making a business deal, but that their business deal supersedes what’s best for the patient.  No company should be telling me and my doctor what’s best.  Isn’t this part of why my doctor doesn’t have those pens with drug logos on them anymore?  Because company influences were supposedly removed from my doctors’ interactions with me?  Because the decisions made between me and my diabetes healthcare professional were supposed to be about what’s best for my health and well-being?

Oh right … that.

This issue isn’t unique to Medtronic or UHC.  Insurance companies have their preferences, and their preferences rarely take the preferences of their patients into account.  (Remember when people were bumped from Novolog to Humalog based on a change in their formulary?  That went well.  And by “well,” I mean people were pissed off and, as a result of the change, their care suffered.)  Thirty years of type 1 diabetes has shown me that a lot of groups want their hands in my disease, and not everyone is putting the patient first.

Which is why the patients need to put the patients first.  Immediately.  Loudly.  Consistently.  And without rancor … or maybe a little rancor.

I have no idea how this issue will be solved, or how to keep things like companies telling patients what’s best from becoming standard fare, but sitting idly doesn’t do a damn thing.  Patients who are impacted by the United Healthcare / Medtronic thing need to tell their stories, both logging them here at DPAC and sending them directly to UHC and Medtronic.  Stories shouldn’t be limited to this specific issue, though.  Access to devices that work for us matters.  Access to insulin matters.  Access to proper dental care and eye care matters.  OUR HEALTH MATTERS, and “you shouldn’t have to decide between medical care and rent.”

What do you want to see changed?  Why does it matter to you?  And how will you let people in “positions of power” know that access matters?

We are at the center of healthcare.  That’s what these different groups and movements keep asserting.  Embrace that.  Without action, the “wealthcare system” will eat us alive.  Do something.  Suggest something.  Raise productive hell.  Raise your voice for yourself and for those who can’t.

The Thin, Red Line.

For the last few days, I’ve been sick.  Sicker than I’ve been in several years – a man cold morphing into a respiratory infection with an agenda, evolving into nausea that rivaled all my morning sickness put together, crashing into having to visit the doctor and cancel a trip to California this week.  (For the record, I’ve never had to cancel a trip.  Ever, in my history of self-employment.  This was not my proudest moment, but it was necessary, as I was the walking dead and have only been recently upgraded to walking mostly-dead.)

For whatever reason, the “sick day rules” that the Joslin Clinic warned my parents and I about back in the day haven’t ever fully applied to my diabetes.  I don’t often see ketones, or highs for hours, or need a 200% bump in my basal rate.  It’s weird; I just don’t get sick in that “affects my diabetes” way very often.

But this round was a bit different.  Aside from being decidedly real people sick, my diabetes took a nosedive in response.  I had ketones that required major insulin and hydration to kick out.  My blood sugar went stupid high for a decent clip and then spent the night in the trenches, coming up only after three juice boxes and two bananas.  (Two bananas!)

It was that thin, red line of hypoglycemia that really freaked me out, as I was having trouble keeping food down, so treating the lows became tricky.  In the beginning of this pregnancy, I had serious nausea for many weeks, and every first trimester-influence low blood sugar was very difficult to properly manage because eating something was a big NO THANK YOU.  This round of illness revisited that theme, leaving me low for hours and having a hard time effectively treating it.  (Thank you again, Tandem, for a pump with a quick-to-set temporary basal rate.  Saved my hypo ass.)  It’s a weird line to walk, not over-treating a low, and even weirder to not feel capable of treating it at all.

But relief is in sight.  This morning did not require anti-nausea tea.  My fever has broken.  I have no voice to speak of (or with), but at least that dulls my complaining down to a husky whisper.  And best of all, my blood sugars have stopped being illness-induced jerkfaces and are back to standard second trimester circus-ry.

Small victories.


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