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Posts tagged ‘diabetes’

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!

*   *   *

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.

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.

That Escalated Quickly.

After downloading and uploading and reloading all my device data to Diasend, I’ve seen the Big Picture, and it kind of blows.

For a good, long clip, things have been completely fine.  In range most of the time, not too many gross lows, and highs were classified as an extended 180 mg/dL, with symptoms to boot.  Well done!  Diabetes on point!  Celebrate by shoveling snow!

But a hiccup here and there have given way to a slippery slope of fuckery.  My two week average a month ago was fine.  My two week average yesterday was gross and not at all where I want it (and know I can have it).

I’m glad I’ve looked at my data, because I’m not sure I would have noticed just how dodgy things had become.  (And a quiet but still curmudgeonish thank you to the need for a flurry of paperwork in order to get my new insulin pump through insurance approval, forcing me to provide blood sugar logs and other data points in order to convince my insurance company that yes, I do have type 1 diabetes.)

I didn’t realize how much higher my two week average had become until I looked at it and recognized the need for change.  Two weeks for me makes a big difference, because it’s in that time frame where I make crappy tendencies into crappy habits.  Ignoring high alarms is okay for a day, but not for a week.  Forgetting to pre-bolus can roll by a few times but more than that equals out to crummy postprandials.  Carby food choices that are lackadaisically carb-counted brings on the blood sugar roller coaster.

Eff that noise.

Time to deescalate this.  Quickly.  Before it becomes as piled on as the three foot mound of snow on the back deck.

Cutting Back on Artificial Sweeteners.

My sweet tooth is completely jacked up.

Bypassing the dessert table isn’t a tough choice.  I can skip the brownies and pie since the Great Palette Change of 2010 (when I was pregnant and my body decided that chocolate was gross and seafood was suddenly on the approved list) and now that I’ve been off the gluten stuff since August of last year, avoiding sweet treats has been a no-brainer (because if I have gluten, my body becomes a vessel of extreme bloat – no effing thank you).

But oh holy cow do I love coffee, and the amount of sweetener I would add to a cup of coffee was abysmal.

I think my taste buds ended up a little warped as a result of drinking diet soda when I was a kid.  After my diabetes diagnosis in 1986, Equal replaced sugar in my house, and the sweet power of Equal is eleven billion times sweeter than regular sugar.  (Not entirely true – 160-220 times sweeter than sugar seems to be the information I found online.  Correct me if I’m wrong, please?)  Convincing my tongue that less sweet is sweet enough has taken some time.

Over the last few months, I’ve been actively cutting back the amount of artificial sweetener I’m cramming into my coffee cup.  At one point, I was using three Splenda in one iced coffee, and for me that felt like way too much.  So, week by week, I tried to use less.  The first few days it was two and a half packets, in an attempt to show my tastebuds that less is more.  After a few weeks, I had cut back to one packet.  (And one packet helped, because then I felt like I could let go of that matchy-matchy OCD thing.)


And now I’m using half of a packet, or sometimes none at all (depending on how nice the coffee/milk combo is).  My goal is to make “none” the new standard.

It took some time to adjust to the lack of sweet.  My body craved that cloyingly sweet taste bud burst, but weaning was the way to go for me because cutting out sweetener entirely and all at once would have been an exercise in futility.  I’m not there yet, but working to make this a “habit of less” because I’m ready to ditch sweetener as much as possible.

It’s hard, though.  Sometimes I just want to rub the contents of a packet of Truvia on my gums.  (Too much?)

Have you ever worked to ditch a habit?  How did you do it?  I think the process of weaning is BORING and if there are ways to trick my mouth into not caring about sweetener, I’d love a tip or two.

 

Chocolate Chip and Heath Bar Cookies OMG.

I can’t cook, but I can bake.  (Which is a bit ironic, because the things I create are best avoided, for my own, personal blood sugar reasons.  /digression)  And for our annual holiday dessert party, I worked with a cookie recipe from the How Can It Be Gluten Free Cookbook to bake up some delicious treats.

Here’s the low-down on how Birdy and I baked these up:

ingredients

1 3/4 cups Bob’s Red Mill gluten-free baking flour
1 tsp baking soda
3/4 tsp xanathan gum
1/2 tsp salt
10 tablespoons salted butter, melted
3/4 cup packed light brown sugar
1/3 cup granulated sugar
1 large egg
2 tablespoons whole milk
1 tablespoon vanilla extract
1 cup chocolate chips
3/4 cup Heath Bar bits

The recipe in the How Can It Be Gluten Free Cookbook is pretty spot on, but we tweak it just a little bit.  The ingredients in the book call for unsalted butter, etc. but Birdzone and I made some changes based on preference.  (We like cookies that are chewy and soft, and this chart serves as a gorgeous guide.)

First, we combined the flour, baking soda, xanathan gum (the magic ingredient!), and salt together in one bowl.  Then we whisked together the melted butter, brown sugar, and granulated sugar in another bowl, mixing until it was smooth.  To the butter, etc bowl we then added the egg, milk, and vanilla and beat the crap out of that mixture with a whisk until it was one smooth mixture.  Then we added the flour mixture to the butter bowl (Does this make sense?  Refer to the original recipe for accurate info.) with the intention of mixing it together slowly, but when Birdy helps, she dumps the whole bowl in at once, so it all went in at once.  (Oh my, run on sentence.)

Once the bowls are combined, we add in the chocolate chips and the Heath bar bits.  Then the dough sits, tightly covered, for 30 minutes.  Only we left ours for 45 minutes, which made it even easier to work with.  (I haven’t tried refrigerating the dough overnight, but that’s next on my list.)

After 30 – 45 minutes, preheat the oven to 350 degrees.  The dough is ready to shape into tablespoon’ed balls (that sounds perverse, sorry) and spaced out on the cookie sheet.  Bake the cookies for about 12 minutes, or until the edges are golden and the middles don’t seem sludgy or weird.

The final product is a chewy, delicious cookie that doesn’t have any gluten in it and will make everything other than your blood sugars happy.  (The photo up at the top of this post is of our first attempt at these cookies, without Heath Bar and without extra butter or salt.  They were good, but not nearly as good as the ones we didn’t snap pictures of … mostly because the cookies didn’t last long enough to photograph.  They were that good.)

Happy baking and for Pete’s sake, BOLUS.

 

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