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Posts tagged ‘type 1 diabetes’

Care What the Community Thinks, Not What the Community Buys.

[I have a working relationship with Animas. My disclosures are here; please read them.]

During the middle of one of our discussion sessions, Daniela D’Onofrio let fly a statement that defined the whole blogger summit for me:

“Care what the community thinks, not what the community buys.”

Last week, the European Animas team brought a group of diabetes advocates together for a face-to-face discussion. This meeting is very special to me because it serves as a portal into the global diabetes online community, bringing advocates from different countries, speaking different languages, together at the same actual table.

And at that same table is the company responsible for believing in our voices: Animas. Several years ago, there was an air of awkwardness when it came to plunking different diabetes demographics into the room – did you really want to talk about the company RIGHT IN FRONT OF THE COMPANY? It felt weird. Strange, kind of like when someone asks if they have something in their teeth and you know you owe it to them to fess up about the giant chunk of broccoli sitting between their two front fangs but instead you say, “Nah! You’re fine,” and then nothing changes.

This was a meeting that included talking about that broccoli. We weren’t in an ivory tower talking about ivory tower-type things. We hit upon topics that felt uncomfortable at times, including the absence of type 2 voices at the table, and the perception of our meeting from the outside. It got sticky, the discussions, because we didn’t dance around any awkwardness. Instead, we tried to embrace it to move forward. When respect is coupled with honesty, more good comes of it. Now, years after those first meetings between the diabetes community and diabetes companies, people are being straight up about their needs and wants. There’s a power to that.

And, as a group, we recognized our privilege. We knew we were flipping lucky to be in that room, many with the support of Animas, and that the meeting is not a yearly guarantee. So we took advantage of our time together. We were honest, regardless of who was listening or taking notes. Our agenda included topics around incorporating and encouraging type 2 diabetes voices, diabetes and well-being, working through advocacy burnout, and building trust between diabetes companies and diabetes communities.

Annie has written about her experiences at the summit here, with some detail from her perspective on the sessions. More posts from other attendees are in the works, and the event was sort of documented on Twitter using the #IntlDOCExchange15 hashtag.

For me, the discussion about type 2 voices was the most eye-opening. It was understood that we were there with the Animas team, so therefore the folks in attendance were either Animas users or caregivers to Animas users. With insulin pumps not indicated for use by people with type 2 across the board, it made sense that the attendees were people touched by type 1 diabetes. Made sense, but still seemed wrong. We talked for a long time about how uncomfortable it can be, at times, to bring different groups together at times, but how necessary it is on the whole. I’ve been a longtime proponent of bridging the gaps between types (ashamed to admit my own preconceived notions in the past) and it felt good to see the people in our sessions talking openly about the common ground between the diabetes types, even if not everyone saw that common ground at first glance. People are people, regardless of their diabetes “type,” and to pretend we don’t have common ground is truly unreasonable.

Together, we’re stronger; no caveat added.

It was in that last session that Daniela summed up every company interaction (or simply every interaction, ever) that’s been productive, at least for me. Understanding and caring about the needs of the people touched by diabetes is what really matters; community and business objectives alike benefit from that level of interaction and involvement. This applies to people with type 1 diabetes, type 2 diabetes, type whatever diabetes.

So how can diabetes companies best serve the overall community? By caring more about what people think than what they buy. (Or, in terms that are more my speed: Give a shit about PEOPLE, not purchases.)

And I think that’s happening. Less slowly than before, and certainly surely, patient advocates across the health condition spectrum are raising their voices and being HEARD.

EU Blogger Summit

A photo posted by Kerri Sparling (@sixuntilme) on

Our group’s viewpoints were not representative of the entire diabetes community (just as my post here is not representative of the entire summit), or even of our respective regions, but it was powerful to have different individual opinions shared comfortably and openly. Many people in the group were returning to the meeting for the third or fourth time, but there were a few new faces, and it was encouraging (inspiring, even) to see those new voices welcomed into the fold.

I’m very appreciative that Animas trusted me to facilitate these discussions, and allowed me the opportunity to meet with my global DOC partners to move the mission forward. Especially when they, as a company, are not dictating the mission, but are instead along for the ride with our community as a partner. Props, and thanks, for that, and for pointing out the broccoli while simultaneously picking it out of their own teeth.

(And with that, I’ll end that particular gross and specific metaphor.)

Lower Arm Real Estate.

“Rotating sites?  Hell yeah, I rotate.”

… sort of.

I’m good about rotating my pump and CGM (continuous glucose monitor) sites, but I’m decent, at best, about exploring new real estate.  Most of the time, I use my outer thigh or lower back/hips for my CGM, going back and forth between those four areas.  This sounds like proper rotating, in theory, but in practice, I am re-using and abusing the same patches of skin.

Because my skin has a persistent and scaly reaction to the sensor adhesives, it takes several weeks for parts of me to heal after they do their seven days of data due diligence.  Which means that I need to stay the eff away from my last two most recent sensor sites, or else a skin reaction blooms in a matter of hours, regardless of preventative measures.

tl;dr – My skin hates everything and I need new real estate for my diabetes devices.

I’ve seen a few of my PWD friends sporting their sensors on their arms, but until recently, I’ve never been able to keep an arm sensor stuck.  On me, the tape always comes loose and even extra adhesive goes rogue on me.  Arm sensors, up where I used to pinch up and do injections on the back of my arm, are a disaster for me.

But a few days ago, I took a crack at a lower arm sensor, placing it six inches or so above my elbow.  It’s more on the front of my arm (giving my bicep a strangely LEGO’ish look), but so far, so good.  The adhesive is staying put, the Toughpad seems fine, and no skin irritation here on day three.

Above the elbow Dexcom sensor. #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Placement of sensor on arm. My arm. (Why does this caption sound so formal?! Over and out.) #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

I’ve been having trouble keeping sensors comfortably stuck in the last few weeks, so I’m hoping a true and proper site rotation helps heal what ails me.  Otherwise, I may scratch my skin into oblivion and will be forced to slather it with Brad Pitt lotion.

[Dexcom disclosures. And all my other disclosures, if you'd like some light reading.]

One More Sneaker.

This week, in my quest to become a Lady of Suburbia, I went to Marshall’s to pick up a lamp.  (I also bought pumpkin coffee beans.  Whilst wearing yoga pants yet not doing yoga.  In the middle of the day.  Forgive me.)

This visit was on the same day that I was sharing a #dayofdiabetes (peek in on the hashtag here), so diabetes was a documented focus.

The cashier was a nice lady who wanted to chat.  As she was ringing my purchases up, we both overheard the cashier next to her ask a patron if they’d like to donate to the JDRF.  “No, not today.”

“I hope some people say yes about donating to JDRF,” I said quietly to my cashier.

She nodded as she put my things into a bag.  “Yeah, most people say no.  I haven’t had a single donation yet today, but I had a few yesterday.   I always ask, though.  It means a lot to me.”

“Oh yeah?  Do you have a personal connection to diabetes?”

“I do.  My dad has diabetes.  Type 1, since he was about eight years old.”

“Really?  Me, too.  I was diagnosed when I was seven.”

She looked at my face, then her eyes drifted to my hip, where my insulin pump was visibly clipped.  “No kidding?  Is that your pump?”

“It is.  I’ve been pumping for about ten years.  I use a continuous glucose monitor, too.”

“My dad is old school.  He does the injections with syringes.  He’s had it my whole life.  He’s had some low blood sugars that I remember.”

“My daughter is five.  I bet she’ll have stories about my diabetes when she’s our age, too.”  I smiled at this woman who was the fast-forward of my own little Bird, a child without diabetes raised by a person with diabetes.  This woman’s understanding of my own day-to-day was intimate, and we had yet to exchange names.

As I paid for my purchases, she raised an eyebrow.  “Do I even have to ask if you’re donating?”

I shook my head.  “Nope.  Count me in for a sneaker or two.  One for me, one for your dad.”


29 Years with Type 1 Diabetes.

Even though my diabetes diagnosis was twenty-nine years ago today, I feel kind of done with letting it serve as a milestone marker for me.  In years past, I liked marking the day because it felt like a moment of flipping the bird (not this Bird) to diabetes.  Over the last few years, I’ve kind of liked not paying much attention to the anniversary; it was an opportunity to remove the bold underline from diabetes.  Diabetes is something that’s part of my life, but letting it blur my focus isn’t a good head space for me to be in.


Instead, I’m focusing on the shit I like.

Like how my daughter is five and a half years old and she’s a really happy kid.  The smile that spreads across her face when she sees the school bus approach in the morning is my new favorite thing.  That, and watching her walk with a book bag that’s half the size of her body.

[Total aside:  I also really like that, in our neighborhood, the school bus drives in and picked up the kids, goes up the road and through the cul-de-sac, and then drives by us again as it leaves our street.  Which means that the parents stand there and wait for the bus to come back, then we all wave like lunatics.  It's a very strange custom and one I already find comforting.  (I wonder if the sidewalk group of showered-and-dressed parents eventually devolves into a ragtag pile of bed-headed, bathrobe-wearing, coffee-cup-clutching adults.)]

I like my husband.  So much that I taught our daughter how to write names in the peanut butter.  She thinks it’s a weird custom, but got all excited when given the opportunity to write “LOOPY” in the untouched surface of a new jar.

I like my job.  Living with diabetes can be an intrusion and as I mentioned last year, the intrusion seems to have dulled over time for the most part, but the career and the voice that I’ve had the good fortune to build as a result of this frigging disease is more fulfilling than any other job I could imagine.  I’m looking forward to the chance to meet with my European counterparts in Stockholm next week, and very excited for what’s on tap for 2016.

I like my health.  There are bits and pieces I’d change, if given the chance (see also:  bringing diabetes back after 30 years, mostly because I’ve kept the receipt this whole time), but on the whole, I am extremely lucky to have a disease where I can strongly influence my personal health outcomes.  I am in the driver’s seat, even if I have an unruly passenger.  Despite diabetes, I can still run.  I can still dance (badly).  I can make mistakes.  I can make a difference.  I can still stay out late and laugh hard (resulting sometimes in a snort, which is not cool, body).  I can raise a family.  I can be a crumb.  I can also be a good person.

I canAnd you can.  (Toucan.)

And I like you guys.  A lot.  Your support and camaraderie has been instrumental over the last decade, and I think I’m in a better mental health place as a result of this community.  Twenty-nine years ago, community was limited to my zip code.  Now, some of my best friends are based in this community, and I’m grateful as eff.  Access to this digital database of truly amazing human beings has been the best thing diabetes has brought to my life, islets down.

So onward, you guys.  ONWARD.  To another year of BYOI(nsulin).


Longest Dexcom Break in Six Years.

“Is it because of the skin thing?” he asked, watching me put the transmitter and receiver on the bedroom dresser.

“Yeah,” I replied, only it wasn’t exactly the truth.  Sure, my skin had some pretty irritated patches from the constant application/reapplication of my CGM sensors, but it was manageable, especially if I was more diligent about rotating my sites.  But it wasn’t just the physical itch or the bulk of another device stuck on me.

I needed to fly blind for a while.

Which sounds ridiculous, because I am lucky as hell to have access to that data insight in the first place.  Twenty-some-odd (they’ve all been odd) years ago, I would have laughed in you face if you told me I could have access to all-day streaming blood glucose data without having to prick my finger ever five minutes.  I remember putting on my first Dexcom sensor and being amazed at the trends alone (the old STS wasn’t up to G4 standards).  Using a CGM helped me corral my blood sugars in pursuit of a happy-baby-range A1C without working in a pile of low blood sugars.  And throughout my pregnancy (and the subsequent raising of my now-not-so-small Bird), the data was beyond useful.  It became indispensable.

But after six years of wearing the sensor almost all the time, feeling like the two hour booting up time frame was an eternity, I needed more than two hours off.  I needed more than two days off.  I needed to take the sensor off and put it on a shelf for a week or two in order to stop leaning on it so heavily and to help retrain my body and my mind to tune in more actively to diabetes.

Because when the sensor is on and throwing data, I trust it.  Trust to the point of crutching out on it, not testing my blood sugar often enough throughout the day and making corrections and meal doses off the CGM data.  (Do as the FDA and Dexcom say, not as I do.  Consult your doctor before ever consulting the likes of me.  See also my Dexcom disclosure.)  For years, the CGM data was making me better at the job of managing my diabetes.  I liked it that way, but in the last few weeks (admittedly, months), I haven’t been doing a good job of staying on top of my diabetes.  Instead, I’m letting the technology take control, when the one at the helm should be me.

Took a break.

A photo posted by Kerri Sparling (@sixuntilme) on

So I took off the sensor about a week and a half ago.  Defiantly, but also half-expecting to cave and put another one on right away.  For the first two days, going to bed at night was the toughest part because of my concern for overnight hypoglycemia.  But I was testing more, and I set an alarm one night to double-check, and then there was this moment when I wasn’t panicking about the lack of data because I had started re-trusting my own ability to do this myself.

Because I can do this. I have done this. This Friday marks 29 years of doing it and doing it and doing it well. I’m in control, despite the work it takes to get there and the patchy moments of “Yeah?”

This afternoon, I’ll pop a new sensor on and watch my glucose live-stream again.  But it will be different because I won’t feel like I’m along for the ride with this diabetes bullshit.  I feel a little more like I am back in the driver’s seat, with technology as my seat belt instead of my airbag.

To A Crisp.

The folks at Diabetes Daily have cobbled together a day to discuss diabetes social media burnout.  (Yes, ironic to dedicate a day of online discussion about diabetes social media burnout …) but the topic is real and something that we have all encountered over the years, so it bears discussion.

Only I’m not talking about it today.

Why?  Because I don’t really feel up to it.

The crap that I have to do to stay on top of diabetes is non-negotiable.  Checking blood sugars, making careful food choices, exercising, blah, blah, blaaaaah.  That stuff is part of the repertoire I cannot ignore without putting my health at significant risk.

But the blogging partTwitterInstagram?  Answering emails?  That’s not required for diabetes management.  That’s auxiliary.  And mostly positive, in my experiences.  The Internet isn’t always the cuddliest place, but in the diabetes community there is a welcomed trend of positive interactions and real, substantial relationships with people touched by diabetes coming together to share experiences, ideas, and to help someone carry the parts of diabetes that get a little heavy at times.

But these connections are not required.  They are a choice you can make, just like opening your computer or clicking away on your smartphone.  More choices follow from there, steeped in personal preferences:  Download the Facebook app on your phone?  Only use Twitter during #dsma?  Take weekends off from social media?  Engage with trolls?  Engage in supportive interactions and fruitful friendships?  Give a shit about cruel things that people might say?  Ignore/block/delete unwanted commentary?  Seek out local, in-person meet-ups?  Have long text message threads with friends you’ve made in the DOC?  Dedicate your personal and professional life to diabetes efforts?

… or how about take a breath?  Enjoy a combination of what’s available.  Relax a little bit.  Enjoy social media as an option, not as a requirement.  The Diabetes Online Community is a tool in our diabetes management toolbox.  And just like with any toolbox, you don’t always need the same one.  (Avoid trying to use a flat head when you need a Phillips.  Don’t use a hammer when you need a steamroller.  Learn the difference between a level and a wrench.  Never substitute playdough for a nail.  Don’t chew on a socketwrench.  Et cetera.)

For more on diabetes burnout with a side of social media, check out these posts:

Slightly Charred

Show Me Your Pump … Or Not


Talking About Diabetes Burnout

Happy Birthday, Dr. Seuss!



Looking Back: Taking the Plunge.

Summer is coming to a close over here and as we prepare to send Birdzone to kindergarten, I am spending the last few days of summer with my child velcro’d to me.  In an appreciation for family and for how mine handled diabetes as I was growing up, I wanted to look back at a post from five years ago where my aunt takes a stab (ha?) at giving me my insulin injection.   My immediate and extended family both took excellent care of me as a kid, and I’m glad that diabetes didn’t prevent sleepovers.

*   *   *

I’m from a very big family – my mother is one of seven and my dad is one of five, for starters – so I had plenty of relatives who used to babysit for me when I was small.  Overnight visits at my aunts’ houses were part of the fun, and I always looked forward to them.  (Because – let’s be honest – I liked that they let me put makeup on them and do their hair.  My pretty aunts were like living Barbie Doll heads to me.)

Things changed a bit when diabetes came into the picture.  Sleepovers weren’t as easy to manage, because now we had to juggle insulin injections, blood sugar tests, and being on the lookout for high and low blood sugars – especially back in that first year when everything diabetes-related was so new to all of us. I was still a little kid, and now all this medical stuff, too?

When I was first diagnosed, I didn’t do my own insulin injections.  At the outset, my parents did my injections for me, but after a few months, my extended family started to learn.  I think about it now, having baby-sat for my nieces and nephews and little cousins, and I can’t even picture that learning curve.  I’m so grateful that my family came together to learn to deal with diabetes, instead of leaving my mom and dad as the only ones who were “in the know.”

One of my earliest memories with diabetes is of me waiting on my aunt’s couch while my mother tried to explain to my aunt how to administer my insulin injection.  And every time I recall it, it makes me laugh.

“You need to uncap the syringe, check for any air bubbles one last time, and then pinch up where you’re going to stick the needle.  Once the needle is in, you press down the plunger and pull the needle out.  No problem!”

My aunt was nervous.  “I pinch the skin and then put the needle in?  How fast do I put the needle in?”

“Pretty quickly,” my mom responded.  “Don’t think about it.  Just jab it in there, as gently as you can.”

“Okay, so pinch, jab, plunge, remove.  Got it.”

“Great, so are you ready to give it a try?”

(Mind you, the entire time they’re debating this, I’m face-down on the couch with my pants pulled down, waiting for the insulin injection to be given into my seven year old butt cheek.  Another truly classy moment for me.)

My aunt came towards me, brandishing the syringe like a hot poker.  She uncapped it nervously, pinched up the top of my hip, and said (and I remember this clearly), “Ready, Kerri?”

“Yessh I amph.”  I said into the couch cushion.

“Okay, here we go!”

She expertly stuck the syringe needle into my skin, and I barely felt the pinch.  And then she pulled the needle quickly out, letting out an “Oooh!  I did it!”

My mother sighed.

“You didn’t push the plunger down.”


“The plunger.  To dispense the insulin?  You didn’t push it down.  You just stuck her with a needle and then pulled it out again.”  I could hear my mother trying not to laugh.

“Oh shit!” my aunt exclaimed.

I laughed, despite the fact that they were about to advance on me again with that syringe.

“You shed de esh word.”


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