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Posts from the ‘Diabetes Community’ Category

Diabetes Blog Week: Kicking It to the Curb.

When I was first hospitalized upon diagnosis, I spent two weeks in-patient learning the new and tangled ropes of type 1 diabetes with my parents.  My hospital roommate was a kid named Eddie, who had been bitten by a spider.  The other source of comfort was Kitty.

This grubby thing has been with me since the beginning.  My mom and dad let me pick him out at the toy store to before being admitted to the hospital, and this stuffed animal received as many paw pricks and injections as I did – albeit saline ones – during the course of those two weeks.  Kitty used to have long, fluffy “fur” that became matted and mangy from repeated snuggles.  He has a defined “waist” from me wrapping my little kid arms around him when my blood was being drawn.  You can’t entirely see his eyes, but they are in there, underneath the smushes of fur.

Chris and I moved into a new house a few months ago, and as we were packing, I had a few boxes designated as “important things.”  Those boxes weren’t put into the moving van but instead stayed in my car to keep them safest during the course of all the stuff shuffling.  One box was marked “DIABETES SUPPLIES” and in it I crammed my pump infusion sets, test strips, Dexcom sensors, etc.  And tucked neatly beside a spare glucose meter was Kitty, continuing to secure his VIP place in my diabetes supplies arsenal.

He used to live in my arms, when I was seven.  Then he moved to my shelf in college.  Now he lives in my closet, keeping watch from between boxes of Dexcom sensors.

He’s ancient.  Older than anything else I’ve ever owned.  Some people might think he’s due to be kicked to the curb, weeded out, tossed.

To this, I say, “No effing way.”  I’m planning on playing Uno with my grandkids several decades from now, with Kitty keeping watch from the closet where I’ll keep all my old lady accoutrements*.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)”

* Like giant pairs of underpants  UNDERPANTS!

Turning Ten.

I’ve written ten years of content here at this blog, and today marks the beginning of an eleventh year.  Ten years is a frigging long time.  When I started blogging, I was 25 years old and living in a one bedroom apartment in southern Rhode Island with Abby the Cat and a newly-minted Siah Sausage, starting my relationship with Chris and clumsily finding my footing as a proper adult.

Rocketblast forward ten years and I’m a self-employed writer and proud diabetes advocate, married to the guy whose name I still write in the peanut butter, mother of one small but fierce little Bird.  (And, as Rhode Islanders should, we came back to Rhode Island.)  Throughout the last ten years, so much has changed.  But type 1 diabetes has been a constant.  (A constant pain in the butt.  A constant source of humility and perspective.  A constant thing to be conscious of and diligent about.  All of it.)

What makes my diabetes management easier?  A healthy diet, lots of exercise, checking my blood sugar, taking insulin appropriately … check.  What makes doing all those things easier?  A healthy community, lots of community, checking in with the community, taking community appropriately …

… check again.

I could go on and on about how blogging about diabetes has opened up opportunities for support and camaraderie, but I’ve kind of already done that.  So I’ll just say thank you to each and every one of you who reads this blog or writes their own blog or Tweets about diabetes or posts about diabetes on Facebook or Instagram or Tumblr or [insert shiny, misspelled social media thing here].


Thank you for sharing your stories, and for creating our diabetes community and helping it grow.  It’s been an amazing journey, the one from “alone” to “connected,” that “grateful” doesn’t even begin to touch.

Onward and upward.

FitBit Motivation.

I like my FitBit.  I’ve been using one since March of last year and it has consistently kept me motivated to keep moving.

… okay, let me check that for a second.

It’s not the device itself that keeps me on the move. Initially, I liked seeing the numbers climb on my step count and watching that ticker drove me to earn higher numbers.  It was a stark mental contrast to how I felt about my diabetes numbers, where I was aiming for more of a game of golf (bring that number DOWN, not UP).  FitBit was cool because the higher the number, the better.

Eventually, the newness of the self-tracking incentive wore off and I wasn’t as eager to fight to hit my step goal.  I still exercised daily, but with a little less oomph, if that makes sense.

What reinvigorated my motivation are the people I’m interacting with through the FitBit community.  And this is where diabetes intersects a bit, because most of the people I’m connecting with through FitBit are friends from the DOC (diabetes online community).

One of the things I like most about the FitBit are the challenges you can engage in.  Here’s a screenshot of what’s available (over there on the right) –>

The ones I like the most are Workweek Hustles, because you have five days to not only reach your own self-set goals, but you can pace yourself against friends, making it a friendly* competition.  As the FitBit devices sync with the app, you can watch your step count climb and see which participant will come in “first” (with the most steps).

Dude, it is FUN to play and to flex my competitive muscle.  (I’m a little bit competitive.  Maybe more than a little bit, judging by my husband’s bemused raised eyebrow every time I go to use the treadmill at 9 pm.  “FitBit challenge again?”  “Yep.”  “Go get ‘em.”)  And while exercise isn’t something I’ve ever shied away from, it’s more exciting when I’m held accountable.  If I’m in first place, there’s no way I’m going to skip a workout or avoid going for a walk or run, because I want to keep my foothold on that leader board.

These competitions play out awesomely for my blood sugars, if I stay on top of things.  Making an effort to move more during the day has brought my total daily doses of insulin down by more than 20%, which for me is quite a bit.  (Also, this is not medical advice or science of any kind.  Talk with your doctor if you are considering taking anything you read on the Internet as medical advice, because they are a doctor.  And I am simply an over-caffeinated FitBit addict.)

More importantly, I noticed that my activity level goes up significantly when I’m engaged in a FitBit challenge.  If there’s a competition to participate in, reaching my step goal of 12,000 steps per day is a piece of (gluten-free) cake.  It’s like having a dozen workout buddies.  (Read Laddie’s take on the challenges here.)

FitBit challenges are pretty freaking awesome.  And fun.  And help break up some of the mundane ho-hummishness that my exercise routine can fall into.  A dose a fun, friendly competition and accountability is exactly the gentle incentive I needed.

* “Friendly” sometimes needs to be in quotes because a certain academic who shall not be named has a tendency to become a thorn in my competitive side.  Cough – @miller7 – cough.

Empathy and Diabetes.

An example of Cards for Humanity, T1D edition. #makehealth

A photo posted by Kerri Sparling (@sixuntilme) on

This is the card one person at the meeting pulled. When their alarm went off, they got up out of their seat and dropped to the floor. Immediately, someone else sprang into action.

I watched from a distance while Michael drew up the glucagon injection and, with fumbling hands, injected it into the simulated “skin,” aka the rubber ball.

Michael’s reaction to having to following this exercise:

And this is what playing Cards FOR Humanity looked like at the meeting I attended this week.

Introducing "Cards FOR Humanity" at this #makehealth event, driving T1D empathy. #proudtobepart

A photo posted by Kerri Sparling (@sixuntilme) on

For the last few months, I’ve been part of a design team for type 1 diabetes  (put together by the T1D Exchange and C3N – the disclosure is that I have been compensated for my time), and the team I am on decided that part of truly understanding diabetes means walking the walk.  It means understanding the subtleties and nuances of diabetes. 

It’s empathy.

“Empathy is the experience of understanding another person’s condition from their perspective. You place yourself in their shoes and feel what they are feeling. Empathy is known to increase prosocial (helping) behaviors.” – from Psychology Today

To make an attempt at helping people better understand diabetes – helping them empathize – we created a card game of sorts. Based loosely on “Cards Against Humanity,” we took that concept for a spin and created a deck of cards with scenarios and accompanying questions to walk someone through a moment in a life with type 1 diabetes.

#empathyordie #makehealth

A photo posted by Kerri Sparling (@sixuntilme) on

#makehealth #empathyordie

A photo posted by Kerri Sparling (@sixuntilme) on

#makehealth #empathyordie

A photo posted by Kerri Sparling (@sixuntilme) on

The discussions that grew from these cards was inspiring, and these discussions gave rise to new levels of understanding and innovation, simply because people in the room who didn’t have diabetes identified more with the people who did.

There’s no way to properly simulate “a day in the life with diabetes,” but a glimpse can be provided, and from that understanding, innovation will rise.

To download a free PDF of the discussion cards, visit Cards For Humanity.

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.

 

Spare a Rose: 2015 Results.

This year, the total raised for IDF’s Life for a Child program through the Spare a Rose, Save a Child campaign was $24,229.

We aimed to raise money and awareness for kids in developing countries who are without resources and insulin, and we raised money.  And awareness.  For the third year running, the diabetes community as a whole pledged their time, money, and outreach to touch the lives of people we’ll never meet but who have a chance to thrive based on our willingness to give.

If that’s not inspiring, I’m not sure what is.

In these beautiful images created by Mike Lawson from Diabetes Hands Foundation, you can see how far that money goes.

[More on the Spare a Rose 2015 results here]

Thank you, each and every one of you, for your support for Spare a Rose.  Your blog posts, Tweets, emails to friends and family, you reaching into your own pocket to share just a little so that others can continue to live … every little thing you do, matters and resonates.  Spare a Rose has closed out for 2015, but the influence of our collective contribution will last a lifetime.  And will provide a lifetime.

Our global community thrives and continues to inspire, thanks to all of you.

 

Animas Vibe: A Few Weeks Later.

Again, disclosure:  I work with Animas and have a sponsorship contract.  Here are more details on my disclosures. And this is the Mr. Plow theme song.  Mr. Plow would be great, about now, since the snow keeps dumping down outside.

It’s been several weeks since I’ve switched to the Animas Vibe insulin pump (with integrated CGM technology – doesn’t that sound like a rehearsed phrase?  How about “insulin thing with CGM thing built in and have you seen my coffee, pleaseandthankyou.”), and I thought I’d take a crack at some second impressions, since the first impressions were only compiled after a few days.

Talking ‘Bout CGM:  I am still into the concept and application of having one device that does the work of two.  While the Vibe still requires that I wear an insulin pump infusion set and a CGM sensor as two separate insertions, it removes the need for an external CGM receiver.  I wrote about this last time, but to reiterate:  I am okay with not using the separate receiver.  I’ve traveled a lot in the last few weeks and the first few trips, I brought along my CGM receiver so I could plug it into the SHARE port.

For the record, I still haven’t upgraded to the 505 software.  Judge all you want.  :)   Which may explain my identical CGM graphs.  (And, also for the record, I’m really, really excited to see the new Dexcom receiver.  That may change how I feel about clouding, as it would be much simpler.)

But then Chris and I came to realize that we aren’t good at this whole “data sharing” thing.  As much as it sounds like a good plan in theory, we aren’t good at the application of it.  I think this becomes a patient-specific preference sort of thing, and for this PWD, I’m not a data-sharer.  But as I mentioned with that previous dead horse that I keep flogging, I like options.  Love them, actually.  And anything that gives data options – LIFE options – to people touched by diabetes, I am all for it.

(That sentence was a grammatical nightmare.  Ignore the sloppy parts and move on, yes?)

DiasendYesterday, for the first time in a long time, I downloaded (uploaded? loaded.) my data to Diasend.

The data collection portion is cumbersome.  I hate dongles and charging cords and all the extra beeps and wires required to make sense of diabetes data.  (Which is why I’m such a fan of the Verio Sync idea, which uses bluetooth technology to automagically suck the results off my meter and spit them into my iPhone, but there are issues with that system, too, because it’s only iOS compatible.  Pluses in one way, minuses in another.  But see aforementioned “I love options” sentiment, because it still applies.)  But I did download my pump data, which also downloaded my CGM data.  And, because I was feeling ambitious, I uploaded my glucose meter, too.

So this was my first time looking at Diasend with information about my insulin doses, glucose meter results, and CGM results on the same screen.  (No, I am not sharing my results.  My numbers have been absolute shit lately and I’m not going to pepper my blog with confirmation that I have diabetes.  I’ll let the c-peptide test that’s required by my insurance in order to cover my insulin pump serve as that confirmation.  Yes, that’s a thing.  Yes, more on that later.)

Diasend is good for granular information, but the information on the “compilation” tab was ace for me.  Seeing my blood sugar averages based on time of day was powerful.  (I have midnight to 11 am nailed and awesome.  Everything not in that time frame needs a solid snuggle these days.)   As a Mac user who hasn’t explored the new Dexcom/Mac Portrait (I’m woefully behind on everything that doesn’t involve Birdy these days), seeing my Dexcom data on my laptop is amazing.  I’ll be exploring Portrait in the next few days but in the meantime, I’m happy that information can be siphoned over to Diasend.  And it puts the constant flow of data into digestible context.

Pump Stuff.  Since I was a Ping user before, using the Vibe feels familiar and easy.  I’m still glad this sucker is waterproof and the button clicking process is familiar to me.  All of that feels the same.  One thing I have noticed is that the more my CGM needs attention, the faster the battery in my pump needs replacing.  This is annoying, but makes sense despite the annoyance.  For the first time ever, I’ve invested in lithium batteries for my pump and it seems to hold much better than the alkaline ones I have been using for the last … forever.  But overall, the pump feels familiar and comfortable, and since I hate change, that familiarity is a plus for me.

Alarms, for whatever reason, remain easier to hear and feel when they are coming from the pump.  This was a huge concern of mine because I thought the pump alarms would be muffled by clothes and bedding, making them hard to catch.  But I actually respond to low and high alarms more readily on the Vibe.  I am not sure why.  Maybe because it’s attached to my hip and I feel the vibration?

What remains to be seen is how the changing state of Dexcom progress will affect my feelings about this pump.  Right now, it’s the only one integrated with the CGM I already use, so that’s a huge plus.  But I am concerned about the fact that the software in the Vibe is already behind on the current Dexcom system.  I know the FDA process creates hurdles that are hard to clear, but since the Vibe has already cleared the Big One, can I expect that updates and upgrades will come fast and furious?  As a PWD using the Animas product, I hope this is the case.

And lastly, I’m hoping to have this pump covered by my insurance company.  I’m still trying to get a c-peptide test done (travel, snow, and issues with fasting) to fulfill the requirements issued by Blue Cross Blue Shield, so that journey remains ongoing.

Thankfully, I’m still pretty effing sure I have diabetes.   So yay?  Yay.

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