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Posts tagged ‘type 1 diabetes’

Plug It In.

I’m not a good traveler, but I am a good packer. Part of my preparation ritual is to make sure I only bring what I need and that outfits are tried on and coordinated before I go. (Because there was that one time I brought a shirt and forgot pants and that made for a different sort of panic before a presentation.)

Thinking ahead helps me prevent over-packing. (I have made a rule about not checking baggage, ever, if I can help it.) So before I left for a business trip on Thursday afternoon, my house was a brief flurry of coat hangers, dresses, and shoes. I tried on four or five different things before chucking them into my suitcase (who am I kidding – I military roll everything so it fits) and then it was time to get ready to leave the house.

It took me almost an hour to realize that, in my frenetic fashion show, I had my pump clipped to my hip but not connected to my infusion set. It wasn’t until I heard the Dexcom alarm let loose with the HIGH ALARM! that I realized my tubing was wagging like a tail. Disconnected from my body. Leaving me on an unintentional insulin hiatus.

So many variables influence my blood sugars – exercise! Insulin levels! Food! Stress! Exclamation points!

But sometimes it’s as simple as remembering to plug shit in.

Sharps, or “Shaaaahps,” Containers.

In the last few weeks, I’ve taken some device breaks and reverted back to some of my multiple injection (MDI) ways (until skin rashes healed up, bruises started dotting up my skin landscape, and frustration with trying to draw up 1/4 of a unit of Humalog using a syringe tossed me back into DeviceLand).  It was a good break and one I needed, but I was reminded of how many sharps I can accumulate during the course of a week on MDI.

Back when I lived at home with my parents, my mom used an empty detergent bottle to throw my sharps into.  When it was full, she taped it up with duct tape and my dad disposed of it somewhere “official.” (But to be honest, I have no idea where he brought it.  The shed at my childhood home could be filled with used insulin syringes shoved into fleets of Tide bottles, for all I know.)  When I moved out and went to college, I continued the same system only I brought my full sharps containers to our local pharmacy.

These days, I don’t generate a lot of sharps and currently have a few containers that need to be disposed of (tips from Joslin on sharps disposal here), but that’s largely in part due to the fact that I rarely use syringes these days.  Even when I’m on pump vacations, I tend to use insulin pens over orange-capped syringes.  (Did anyone use one of these back in the day?  I loved this thing.  It was like a fingernail clipper for my drug paraphernalia.)  I busted out a “formal” sharps container that I had in storage for the last few years and have been using it for pen needle tips, lancets, etc.

Sharps. Or, if you're from New England: "shaaaaahps."

A photo posted by Kerri Sparling (@sixuntilme) on

It feels strange and foreign to not be shoving my sharps into a discarded laundry detergent bottle.  I feel like my sharps went all professional.  Like they wear tie clips and have board room lunches. But, at the very least, they are properly contained and will be properly disposed of and that makes me feel like I’m properly PWD’ing.
 

Guest Post: #SpareARose and Symplur.

I’m late with today’s post, but it’s a good one.  :)   This afternoon, Chris Snider of A Consequence of Hypoglycemia has contributed a guest post about Symplur and the Spare a Rose, Save a Child campaign.  It’s an in-depth look at how the stats of the #sparearose hashtag campaign influenced the spread of the message.  This post is an interesting peek at where analytics and community passion line up, and where they don’t.  Thanks, Chris, for offering your insight!

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I started working with the folks at Symplur at the beginning of this year. My objective was to tell stories and bring the patient community further into the conversation around data – specifically the data they are generating through health conversations on Twitter. After the Spare a Rose campaign concluded, I reached out to Kerri to see if I could help shine a light on the 2-week whirlwind using Symplur’s fancy analytics tool, Signals. I was given four questions to try to address.

1. How did the message spread? Did it reach outside of people with “diabetes” in their profile?
2. What kinds of messages resonated on the whole? Calls to donate, stories about why insulin matters, etc?
3. Did people with small reach still have a big impact because of the close knit nature of the DOC?
4. Can the data prove that every voice does matter?

(1.) What the data says: people associating themselves with diabetes in their screen name, user name, or description represented 43.9% (321) of #sparearose participants, but generated 63.5% (5,825,580) of the impressions. What is difficult to report on is how many of these impressions overlap within the community. How many followers do each of the 43.9% have that are associated with diabetes in one form or another? How many impressions from the other 56.1% were made on people living with or associated by diabetes? It’s difficult to truly parse out where the venn diagram sits, but I think it’s safe to say the diabetes community came strong with their effort to spread the word. This does leave me with some bigger questions to consider for 2016: How might we increase the number of people sharing #sparearose that aren’t immediately associated with diabetes? Should that ratio always favor the diabetes community? How might the appeal of Spare a Rose better resonate with people without diabetes?

(2.) I tried to see what kind of activity was generated around tweets featuring the word ‘donate’ and ‘insulin’ as those are the two biggest subjects related to the Spare a Rose campaign. Every tweet including the word donate included a link to sparearose.org or the subsequent donation page. Similarly, 93% of links including the word insulin included a link to one of those two pages. It makes sense, right? If we’re going to ask people to donate, we need to show them where to go. If we’re going to appeal to the life-saving insulin #sparearose provides, we need to include a link to show people where to go. Looking past the percentages, however, reveals something quite curious. There were over twice as many (2.3x) tweets featuring the word insulin as there were the word donate. What would the final fundraising totals look like if more tweets mentioned the fact that one of the goals of #sparearose is to collect donations? Something to think about, perhaps.

One other stat I noticed was that of all the #sparearose tweets, 67% of the ones that were recorded were Retweets. I wonder what this data would show if more communication about #sparearose was original thought rather than rebroadcasting the words of someone else. To be fair, I’m just as guilty of this as the next person. Sometimes someone else does a better job of saying what I wanted to say and rather than repurpose someone else’s thoughts and words, a simple RT is enough to get the point across.

(3.) To address this, I tried to determine what maximum follower count yielded half of the total impressions from the reporting period. And, what maximum follower count yielded half of the tweets. Where is the tipping point in the makeup of participants that best represents how much of an influence a smaller following can generate. My impressions goal was 3,536,645. Tweets was 868.

Of all the people participating in #sparearose on Twitter, participants with 19,150 or fewer followers generated a little over half of the impressions recorded – How many participants have fewer than 19,150 followers? 97%. 19,000 twitter followers isn’t realistic for most of us, so to put all of this in perspective, participants with 1,000 or fewer followers generated 3% of the total impressions recorded. A single tweet from Crystal Bowersox makes a huge difference in terms of exposure.

Of all the people participating in #sparearose on Twitter, participants with 945 or fewer followers sent a little over half of the tweets during the reporting period. So, most of the tweets came from people with less than 945 followers, but they generated less than 3% of the impressions? My thoughts on this lead into the final question.

(4.) Do small voices matter? Unfortunately I can’t report on how many links were clicked, whose tweets generated the most clicks to sparearose.org. Crystal Bowersox understands the value of a vial of insulin, but do her 60,000 followers? But, for someone with 150 followers, how many of them are going to acknowledge and engage with a donation ask? It feels cold making all of this a numbers game, but the numbers fascinate me. Is there a point where you have too many followers to trust that any significant percentage will engage with a fundraising ask? How likely will followers outside of the diabetes community donate? Should we, all of us, try to cultivate a following outside of the diabetes community in addition to the relationships we build up among the pancreatically-challenged? Is it a matter of making the right ask or the right number of asks?

So we’re clear, I don’t think it’s the responsibility of the entire diabetes community to think about the nuts and bolts of how all this works. What matters most is the passion to connect with others and help educate whoever will listen to the reality that a little can mean a lot to a child with diabetes. Thanks to people like Kerri, we can make a difference. Even if the numbers from Symplur may suggest otherwise, believe me when I tell you that every voice does matter. Every one of you reading this, telling your story, paving the way for someone else with diabetes to feel safe enough to join our crazy little group, all of us are making a difference.

Looking Back: Visual Reminders.

Nothing helps remind me more about the importance of being familiar with serving sizes and what they look like than being on the road for a few days.  Meals away from the comfort and familiarity of my kitchen make for some guesswork, and these last few days have shown me that I could use a refresher on serving sizes.  Here’s a look back at a post from 2012 about keeping your eye trained as to how “half a cup” really shapes up.

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A deck of cards.  A baseball.  A pair of dice and you only look at one of them. (Sorry for the clumsiness; I think it’s weird to write “A die.” as a sentence.  Looks odd.)  A tennis ball.   A hockey puck.

The things that health-related articles use as “visual cues” for portion sizes and serving sizes makes me wish I was more athletic, because then I’d have a really strong feel for the size of these different balls, etc.  (Sidenote:  Hey. Ever write something you want to immediately delete but then you keep it and just wish your brain was less daft?)  But these visual cue things are helpful for me, because if I don’t take note of just how big “one small apple” really is, it’s easy to lose track of how much I’m eating.  I need to constantly refresh my eyes on serving sizes, which in turn helps me better estimate carbs when I’m SWAG (aka Scientific, Wild-Ass Guessing)’ing it.

(Second sidenote:  The hamburger pictured here looks exactly like a fudge-drizzled chocolate cookie, which is making my brain very confused.)

Which is what I spent part of my morning doing today:  busting out the measuring cups in my house and reminding myself what certain foods look like when properly measured out.  I’m not shooting for serving sizes or anything FDA official.  I needed to do this purely for carb assessment reasons.  What does 35 grams worth of Rice Chex measure out to look like?  How much salad dressing is 10 grams of carbs?  Brain, be reminded of what 28 carbs-worth of banana goodness looks like!!

Birdy thought I was a basketcase this morning, measuring things out and then putting them back.  “No eat banana, Mama?”  “No more cereal and milk, Mama?”  “That chicken is very good, right, Mama?” By the time I started eye-balling the lunch meat and measuring it on our kitchen scale, she threw her hands up in disgust and went to find her Thomas trains.  (Tertiary sidenote:  Spencer, the silver, streamlined diesel train, is the same size as 15 grams worth of banana, dagnabit.)

But now my brain is brought back to reality.  Less guesstimating and more true and proper estimating, which should help me fine-tune my boluses a touch.  Reminders like this are helpful in keeping me from sliding down that slippery slope of eating 18 lb apples and bathtubs full of Golden Grahams.

(Last sidenote:  I’m sorry that only 2/3 of this post made sense.)

 

Stress!!!! and Diabetes.

Do your blood sugars respond to food?  Of course.  How about to insulin?  And exercise?  A big “hell yes” to those, too.  Food, insulin, and exercise have tangible influence on my blood sugar levels.  But one influencer that I don’t often take into account is stress … which is a ridiculous variable for me to ignore because stress can make my blood sugars leap over tall basal rates in a single bound.

Oh look – a video!

How does stress change the mapping of your blood sugars?

Stream of Consciousness.

Time for a bullet list of purged thoughts, brought to you by the bottom of my coffee pot.

  • It’s not snowing.  I don’t usually have a rage response to winter, but this one has been more than we could properly manage.  (Like when our snow shovel broke under the weight of the drift we were shoveling through.  Or when our snow blower ran out of gas and the gas was in the shed out back and we couldn’t get to the shed because the show was up past our hips.  #fuckyousnow and I mean it.)  So for it to be #notsnowing and #melting is a good thing.
  • Get these hashtags off my blog. #nottwitter
  • For a solid five year period, I did not lose a single pair of gloves.  If one fell out of the car when I opened the door, I saw it immediately.  If I dropped one, it always managed to fall into my bag and not end up lost forever.  Gloves were among the most lose-able things in my wardrobe and yet they always managed to stay paired up and on hand (literally).  But this year, something happened to my glove mojo and I’ve lost four pairs this winter alone.  I don’t know how to recover my good glove karma.
  • I have bought the same pair of moonstone stud earrings a dozen different times, and yet I still only have two singular earrings.  It’s unnerving.  Do these cheap little earrings go where the gloves go?
  • This weekend, I’ll be at the Diabetes UnConference in Las Vegas, where there isn’t any snow and there are many PWD on tap to attend.  I’m looking forward to making new friends, seeing old ones, and bolusing for copious amounts of iced coffee.
  • Way to GO, mySugr!!!
  • Does emotional stress spike up your blood sugar?  Caroline dives in to find out.  (But the answer is yes.  A firm and confidence yes.)
  • Did you guys see that the Spare a Rose totals have been boosted, thanks to a donation program from Asante426 lives saved, thanks to all of you.
  • Thanks to #dblogcheck day, I found some gluten-free lemon bars on this blog.  And now I love this blog.
  • At the Rhode Island JDRF TypOneNation event last weekend, I heard about a new sort of barrier tape to put underneath my Dexcom sensors to help mitigate the wicked rash.  It’s called Mepitac tape and I bought my first roll off of Amazon this morning.  I have no idea if it will work better/worse than the J&J Toughpads I have been using for the last three years, but I’ll try anything to keep the itch at bay.  Will report back after I give it a go.
  • Ripped from DHF’s site:  “The Diabetes Hands Foundation is happy and excited to offer scholarships to diabetes conferences as a part of the Diabetes Advocates program. We offer these scholarships to help get advocates to the major conferences in the US so the patient voice is present.”  You can find out more about the scholarships here, and then you should APPLY because your voice MATTERS.  All caps and such.
  • My friend Jenni Prokopy (the ChronicBabe) kicks ass, and I want her to continue to kick ass.  Check out her kick(ass)starter here.
  • I keep circling back to this David Sedaris essay about his FitBit because I am in a hardcore week of competition with an equally-competitive friend on FitBit, and I’m afraid I may wear holes in the soles of my soul in efforts to win.
  • But as I write this, I’m already itching to get up and clock a few miles on the treadmill in an attempt to gain some ground before traveling this afternoon.
  • In related news, I am relentlessly competitive.
  • And with that, I need to go run.
  • While I’m gone, the cats will guard the door like little, furry sentinels.


Guards.

A photo posted by Kerri Sparling (@sixuntilme) on

 

 

It’s a Good Tune.

“BEEEEP … BEEEEP… BEEEEP!”

“Mom, your Dexcom is making noise,” my daughter says casually, as we’re kicking the soccer ball around in the basement (because we’ll never, ever go outside again because snow).

“It is. Hang on a second,” I told her. A click shows that my blood sugar is over my high threshold, with a few yellow dots taking up residence on my graph. I’m not totally worried, though, because a check of my pump reveals some insulin still on board. I decide to let things play out and see where I land a bit later.

“I’m fine, kiddo. Let’s keep playing.”

The Dexcom has been part of my daughter’s life for as long as she can remember. When she was very small and figuring out her letters for the first time, I remember her running a tiny fingertip along the bottom of my receiver – “D-E-X-C-O-M spells … whaasat spell, Mama?”

“Dexcom. That’s the name of the machine.”

(Unlike most kids, my daughter’s list of first words included “pump,” “Dexcom,” and “diabeedles.” Maybe she’ll grow up to be a doctor? At the very least, this knowledge base has given her a leg-up on winning a few topic-specific spelling bees.)

As Birdy grew older, she started to understand some of the information that different diabetes devices provided. We’ve talked a little bit about how three digit numbers on my glucose meter that begin with “2” most often require me to take some insulin from my pump (same goes for the ones that begin with “3,” only those also come with some curse words), and how when the Dexcom makes an alarm sound, I need to check it and take some action.

“But that alarm – the BEEEEP … BEEEEP… BEEEEP! one – is one we can ignore, right Mom?”

“Ignore?”

“Yeah. When it goes BEEEEP … BEEEEP… BEEEEP, you don’t always look at it. But when it goes like this,” she raises her hands up in front of herself, like she’s sneaking up on something, “BeepBeepBeep really fast, then you look right away and get some glucose tabs.”

Funny how much she notices, how much of my diabetes self-care ritual has become a natural part of our time together.

“Kind of. The long beeps mean my blood sugar might be higher, but it’s not an emergency. The short beeps mean I have low blood sugar, and I need to get something to eat so it doesn’t become a big deal. Does that make sense?”

“Yeah.”

The sounds of the low and high alarms ringing out from my Dexcom receiver have become familiar, like a subtle (and sometimes not-so-subtle) soundtrack for my diabetes life, but I didn’t realize until recently that they are also sounds that remind my daughter of her mother.

The other morning, I heard Birdy walking into the bathroom to brush her teeth, and she was humming a little tune to herself, one that I recognized.

“Hey you. Are you singing a song?”

“Yeah. It’s the Dexcom beep song. It’s a good tune.” She grinned at me, toothbrush hanging out of her mouth.

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