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Posts from the ‘Psychosocial Support’ Category

Opportunities to Participate in Research Studies.

The best way to change diabetes is to participate in diabetes.  Research is important because it shapes and informs how the medical community takes care of people touched by diabetes.  So when there is an opportunity to participate in a research study – especially one that doesn’t require any travel or a huge time commitment – the “Yes, I’ll help!” is hopefully easy to offer.

I wanted to share two diabetes research studies that are currently recruiting participants.  There are gift cards as payment, so there’s extra incentive.  Even though I know helping the diabetes community is incentive enough [insert group hug emoticon here].

And please share this information with others who might be interested.  Thanks!!

Opportunity No. 1

This explanation is short and sweet, and comes from my friend Sean Oser (and his research team).  They are look to find out more about the challenges and success you might have as a person with diabetes.  This study is for people living with diabetes and will take about 30 minutes to complete.  (You’ll be given a $20 Amazon gift card for participating.)  Take a look at the information below, and please take the survey to see if you are eligible to participate.

The survey can be found here:

Opportunity No. 2

There’s a lot of talk in the diabetes community about artificial pancreases and bionic pancreases, but usually about the device functionality.  There haven’t been a lot of conversations about the potential emotional influence of these devices, and one research study is trying to change that.  Jill Weissberg-Benchell, psychologist and CDE out of Chicago, is hoping to have a focus group dedicated to that topic … which I think is very important because tech is terrific but you have to actually use it, and what it emotional factors keep you from using it?

I asked Jill to provide a little background on the study and what she’s hoping to accomplish, so that I could share that information with you guys.  Here’s what she said:

“Whether you have had experience with insulin pumps or continuous glucose monitors (CGMs) or not, whether you have participated in artificial pancreas trials or not, we would love to hear how you and your loved ones feel about the potential impact that automated insulin delivery systems (also called artificial pancreas or closed loop systems) could have on your daily lives.

The INSPIRE study team hopes to identify both the potential benefits and  the possible difficulties or barriers people may face in using such technology so that we can develop  ways to support people when these systems are available to use.  Your feedback will also be shared with teams around the world who are developing these systems so that they can integrate the feedback into their products before they are commercialized.

These focus groups, to be held at your convenience, using an internet-based video conferencing system, will involve one group for PWD and a separate group for their loved ones. In both groups, members of the INSPIRE team will help lead the discussions. These two hour meetings will give you the opportunity to share your thoughts about automated insulin systems in a casual environment and in a confidential manner.  We will mail each family a $50 Target gift card for their participation.

If you would like to learn more about the focus groups, please e-mail Jill and her team at: or call at (312) 227-0330.”

Sleep Number.

I love sleep.

But I did not love sleep while Chris was traveling for work these last few weeks.  Mostly because I did not sleep.

From the middle of September to last week, my husband was away for work. He came home three times for 24 hours apiece, which meant that we missed him terribly. And it also meant that Birdzone and I held down the fort for two months on our own, which, for the most part, went very well. Now that she’s five and a half years old, Birdy is excellent company and we had fun hanging out with friends and playing games. (For the record, she can kick my ass at Uno Attack. And Crazy Mates. If you haven’t played Crazy Mates, look into it. Buccaneer Bob is quite the fella.)

Doing the school routine and maintaining my work schedule was one thing, but getting enough sleep was the most difficult, and somewhat unachievable, goal. The compounded effects of not getting enough sleep took their toll over the last two months.

The first week that Chris was gone, I had a low blood sugar during dinner that was pretty intense. My best friend and another friend were over for dinner, with their kids, so there were people in the house.  I wasn’t afraid that my low was going to leave my daughter unattended.  But this low was long and drawn-out, making my mouth and cheeks numb and leaving my brain unable to formulate anything even close to a coherent thought.  I remember sitting at the dining room table, my Dexcom receiver hollering, and I didn’t respond for a few seconds.  I’d already had a juice box and some glucose tabs and my dinner, for fuck’s sake, but the food wasn’t hitting as fast or as hard as the hypo, so I was floating around on adrenaline and scraps of glucose.

It went on for about 45 minutes, and afterwards, the low hangover was epic.

I didn’t realize this low had scared me so much until a few days later, when I realized that sleep was not happening.  I wasn’t able to fall asleep at night and I woke up several times throughout the night because I was paranoid about experiencing that hypo intensity again.  I decided to share my Dexcom information, usually shared only with my husband and a trusted friend, with my best friend for the duration of my husband’s trip, because she was familiar with what the numbers mean, she knew how to respond in an emergency, and she lives five minutes away (and has a house key), so she could bust in if she needed to.

But even with the safety net of data-watchful eyes and technology that promised to buzz me awake if I fell out of range, shaking that hypo fear was difficult.  It stuck with me for the duration of Chris’s trip, alleviated only when I was either away briefly for work myself or when my daughter was sleeping at my mom’s house.  It wasn’t the actual low that scared me, but the idea that my child could find me low that kept me awake at night.

I wish this wasn’t the case.  I would love to end this blog post with a clever line with advice on how to manage these situations and the best ways to avoid fear of hypoglycemia, but the reality is that I slept through the night again once Chris was home.  And only then.

“It’s Diabetes Month … have you been advocating?” someone asked me in an email this morning.  And I realized I’ve been avoiding it a little, because diabetes has spooked me a little in the last few weeks.  I didn’t want to write about being nervous to go to sleep at night.  That didn’t feel like the “right” kind of advocacy (though there isn’t a “right” kind).

But then I realized that it was the truth.  And as much as I have accomplished despite diabetes, this disease influences my daily life in a way that far exceeds the seconds I spend checking my blood sugar or dosing my insulin.  I had trouble getting any sleep because I was scared.  Plain and simple.

The clever last line of this blog post?  I’m fucking thrilled, for a dozen reasons, that my husband is home.

Spare a Minute for Spare a Rose?

The Spare a Rose campaign is on tap again for February 2016, and time is marching on at a very quick clip.

Now is the perfect time to start thinking about your involvement in the 2016 campaign, and how your workplace can get involved.  Have you seen the Spare a Rose In My Office site?  You’ll find some tips on making Spare a Rose a company-wide effort.  (Hey Diabetes Companies … I’m looking at you.)

Media campaigns are already thinking about their February outreach efforts, so now is also a great time to connect with your local diabetes organization or media outlet, asking them to support people with diabetes in developing countries.

We’re in this together.  And we can use Diabetes Month as our catalyst for coming together to support our own.

To reiterate, from last year’s campaign,

“From February 1 – 14, the diabetes online community is hosting our annual Spare A Rose campaign.  You remember that one, right?  The one where you send eleven roses instead of twelve on Valentine’s Day, taking the value of that saved rose (averaged out to $5) and donating that to the International Diabetes Federation’s Life for a Child program, which provides life-saving insulin and resources for children with diabetes in developing countries.

We need you.

Yes, you.

You’re part of this, you know.  If you’re reading these words, or any words written by a person touched by diabetes, you are touched by diabetes.  Maybe you’re the parent of a child with diabetes.  Maybe you’re an app developer looking to connect with the diabetes community.  Maybe you run a magazine that hosts health-related articles.  Maybe you’re a PR company that hopes to influence the diabetes community.  Maybe you’re a representative from a diabetes company, or a teacher who has a student with diabetes in their class, or a researcher who studies this disease.

We need you to help amplify the Spare a Rose message.  You can donate to the charity, share the Spare A Rose link with your friends and colleagues, and truly take this initiative, this passion – and our global community -  to a powerful new level.

If you’ve emailed a diabetes advocate, asking them to share your latest press release or to engage in your survey, please spare a rose.

If you work in the diabetes industry and you leave diabetes in your office when you go home at night, remember that people with diabetes don’t ever leave diabetes behind.  And that many people with diabetes struggle to gain access to the drug that keeps them alive.  Considering bringing this campaign to your office.  Please spare a rose.

If you are touched by diabetes in any way – the partner of, the friend of, the coworker of, the child of, the parent of, the neighbor of a person with diabetes – please spare a rose.

If you are part of the greater patient community, I’m asking you to walk with the diabetes community for two weeks and help us make a difference in the life of a child.  With your raised voices, we make a greater difference.  Please spare a rose.

This is where we shine, you guys; where we take care of our own.  Where we can take our collective power, not as people with picky pancreases but instead as people with full and grateful hearts.  Show your love for this community on Valentine’s Day by sending one less rose to a loved one and instead providing life for a child.

Flowers die.  Children shouldn’t.

Please spare a rose.

And please spread the word!”

Looking Back: Of Cocktails and Community.

Today, after a lovely morning at the dentist (once again fixing this issue), I’m recovering from a half-droopy novocained face and, as a result, am looking back at a post from 2013 about search engine optimization, diabetes, and cocktails … sort of.

* * *

“So what you should do is see what people are searching for and then carefully tailor your posts to draw in those searches. Pick the search engine terms that there isn’t a high competition for, giving you an advantage in Google’s search algorithm.”

The example he used was pretty simple: “10 Best Cocktails for People with Diabetes”

In a discussion during the European Bloggers Summit in Barcelona (running alongside EASD), a search engine optimization expert gave a presentation about seeding blog posts with keywords in order to cast a greater net for readership. The SEO strategist was helpful, and had wonderful advice for people who were churning out content to get it read, but my body had a tangible reaction to this kind of advice. I felt myself prickling with frustration because is this really what people are writing for? Page views?

No freaking way. Not in this community.

So the top ten best cocktails for people with diabetes? Fucking sure. Let’s do this, social media-style:

  1. The #DSMA: Take 140 characters, a hashtag, and equal parts honesty and humor and mix them thoroughly in Twitter. Tastes best on Wednesday nights at 9 pm EST.
  2. The Blogosphere: Start with a URL or a Feedreader and slap it into the search bar on your mobile device, tablet, or computer, or Google “diabetes blogs” for a list of ingredients. Mix reading these blogs throughout your day for a boost in diabetes empowerment and community.
  3. The Flaming YouTube: Search through YouTube for diabetes, or “diabetes math,” or “breaking up with diabetes,” or “changing the song on my Animas Ping” and you’ll find a slew of video combinations to add to your playlist. (Title the playlist “Cocktails for Diabetics” and you’ll probably get a lot of search returns, but you’ll also find people who want to be found.)
  4. The Instagrammed: Take your phone, photograph any ol’ diabetes bit or piece in your house, and mix with Instagram to create a frothy, fun mix of Dexcom graphs, race bibs, brave new infusion set sites, Halloween-candy-casually-pretending-to-be-hypo-treatment, and friends who understand.
  5. Facebook Your Face: Take your Facebook account and stir gently with groups, hashtags, and posts about diabetes. It may take a while for this mixture to fully set, but once it does, you’ll have a shot of community you can take in one sitting, or something you can sip on and scroll through for hours.
  6. The Friends for Life: Take one part people with diabetes, one part caregivers, one part educators, one part inspirational athletes, one part Disney World, one part green bracelets, and a billion parts love and throw into a salad shooter and spray that stuff everywhere because in-person diabetes meet-ups and conferences will break your heart and mend it within the course of a week.
  7. The Group Text: No specific ingredients, but a drink best shared with many. And at 3 am.
  8. The Call Me: Best served when low, because a phone call to another PWD who understands is the best way to keep from over-treating.
  9. The Honest-Tea: Equal parts empathy and honesty, this cocktail is a must for people with diabetes who are looking for confirmation that they aren’t alone. It’s not about enabling, but empowering. (Goes really well with a side of Communi-Tea.)
  10. The Hug: Social media is great, but nothing is better than a hug between two people whose much-loved pancreases have taken an extended leave of absence. There is no set ‘best time’ for this cocktail – serve immediately and enjoy.

The one in the middle looks like pee, to me.

People in the diabetes community don’t communicate with one another for page views or Google search prowess. Of course, not everyone’s intentions are the same across the board, and there are people who immerse themselves in a community looking for things that aren’t as altruistic, but the majority of interaction in the DOC, from what I can see, is between people who need each other. That’s why so many of us started doing this, and it’s why so many of us continue.

Because when Google redoes its algorithm and there’s a new system for search engine optimization, when there’s an upheaval in what’s considered the “it” platform for social media, the song remains the same for the DOC. Diabetes, for many, isn’t just in your body but also resides full-time in your head, and managing emotions and support is as essential as insulin (and with a significantly lower copay). It’s not about where the discussions are taking place; it’s about the discussions that are taking place. So “drink” up!

You Don’t Look Like You Should Have Diabetes.

“And this, too, please,” I said, sliding the opened and half-consumed bag of gummy candies across the counter, my hands shaking.

This low was bad.  The symptoms were very visible, with unsteady hands and knees that were buckling out and sweat beading up on my forehead despite the 40 degree weather outside.  I knew I was the color of a cotton ball, with the mental capacity of one as well.

My Dexcom had gone off about ten minutes earlier and I picked around in my purse for the jar of glucose tabs that I soon realized were tucked neatly into the cup holder of my car.  Out in the parking lot.  (Useful.)

Necessity forced my hand to grab the way overpriced bag of candies off the shelf and consume a handful.  “Most expensive low ever,” I muttered, aware that coming up from this 45 mg/dL was going to cost me a pretty penny.  I needed to get out of the store and reassemble my wits, but lows don’t excuse shoplifting, so I made my way to the cashier to check out.

“Are you okay?” the cashier asked, probably because I looked half-removed from the planet.

“Yes, thanks.”

“These candies are open.  Do you want a different bag?  These have been half-eaten,” she said.

“No, it’s okay.  I ate them.”  I smiled in a way that I hoped looked reassuring but probably looked weirdly menacing.  “Low blood sugar.”



She smirked.  “And here you are, buying candy.  Isn’t this part of the problem?  You don’t look like you should have diabetes.  Maybe you should stop eating candy.”

I would have rather been eating a banana, to be honest.  Treating with fruit is my preferred way to upend a low.  Or I would have rather had some measured glucose tabs so I knew how much I was consuming and could avoid the post-low rebound.  Fuck, you know what?  I’d rather not have been low at all, because being low in a public place is embarrassing and makes me feel vulnerable.

Let’s just round it out and say that I’d much prefer not to have diabetes in the first place.

“The candy is to bring my blood sugar up.  It’s to keep me from passing out here at your counter.”  It was hard to make the right words come out, but anger jumped ahead of hypoglycemia.  My voice was sharp, like the plummet on my Dexcom graph. “What does someone who should have diabetes look like, anyway?

She didn’t look at me.   And I was glad she didn’t.  I popped a piece of the candy into my mouth, my attempt at a PWD version of a mic drop.  I don’t look like I should have diabetes?  Maybe that’s the point.  Maybe she needs an education on what diabetes does look like, instead of viewing my disease as a punchline, one that society judges unabashedly.

All of a sudden, I can’t wait for November.

Bury the Gift.

I hate the “gifts” of diabetes.  It makes me a little twitchy when anyone asks me to think about all the good that has come as a result of my diabetes diagnosis.  The urge to reach across the table and poke them in the nose and remind them, “Disease is not a PLUS,” is hard to squish.  Diabetes doesn’t give gifts and I don’t like giving it credit for any of my perceived strengths, as far as I’m concerned.

I was reminded of this when Birdy and I were reading a book over breakfast the other day.  It was about cats (contain your shock) and discussed how cats may bring you “gifts” to impress you.  The book kindly suggested that you appreciate the gift and then politely bury it.

“Bury the gift” is how I deal with the things diabetes has brought into my life that are an asset.  I appreciate the perspective and lessons I’ve learned after twenty-nine years with type 1 diabetes, but I’d still like to take all of those “gifts” and politely bury them in the backyard. 

However, I have to grudgingly admit that the influence of diabetes on my life hasn’t been all garbage, so I’ve dug up some of the gifts in order to work my way out of this patch of wet paint.

Breakfast reading. #burythegift

A photo posted by Kerri Sparling (@sixuntilme) on

One gift? I’ve learned to see things in numbers.  For better or for worse, a plate of food is not a plate of food but instead a math problem.  I can calculate how many carbs are in a set meal and mash that up with how much insulin is on board, the amount of exercise I have done (or will do), and take any cortisol-inducing stressors into account when deciding how much insulin to dose.  This is not a magical power but a talent that many PWD have in their arsenal.  It’s hard-earned, the ability to rake your eyes over something for the briefest moment and determine the amount of dangerously-potent drug you need to administer.  Hogwarts doesn’t teach this shit.

It’s helped me learn to forgive.  In order to succeed in a body that doesn’t make insulin anymore, I had to learn to forgive that shortcoming.  I had to teach myself to let go of some of the anger and find things I was still okay liking.  This was a very hard learning curve and I still struggle with it on days when diabetes makes me filled with rage.  But my body is still mine, and still  successful in so many other ways.  I forgive my pancreas, mostly, for being a crumb.

Diabetes has helped me learn to be patient.  Waiting in line at the post office, at the airport, in the grocery store … it’s all smooth when I compare it to the endless vacuum of minutes while I’m sweating and swaying and waiting for food to bring my blood sugar back up into livable range.  I am able to be more patient because I’ve learned to wait.  (This mindset works 80% of the time but has limits, like when I ask Birdzone to put her frigging shoes on seventeen times in efforts to not miss the school bus. Just. Put. Your. Shoes. ON.)

It’s showed me that some shit is terribly funny.  Even when it seems like it shouldn’t be.  Diabetes isn’t funny (except that it totally has to be when emotions are intense and the tension can’t be broken with anything other than some gallows humor).  Some of the hardest laughs I have ever had have been through tears of frustration.  Laughing at this nonsense keeps me centered.

And life with diabetes has taught me perspective, a perspective that I would gladly do without but since I don’t have a choice to give diabetes back, I’ll take the perspective it offers and try to remain grateful for it.  Some people are frustrated by the statement, “But it could be worse.”  That doesn’t frustrate me.  I believe it could be worse, and I’m grateful that it’s not.  I’m thankful that I live in circumstances that allow for a butter compartment stashed with insulin and a job that pays for medical necessities.  Diabetes has shown me what one malfunctioning order can do to my system, which prompts me to take good care of my body, broken bits and all.  I’ve had close to three decades with diabetes, and I’m unsure about what opportunities the future might hold.  But I’m not waiting for a cure.  There’s life after diagnosis, and I can’t put everything on hold until “there’s a cure.”

There’s still a life.

And there’s still a mental garden filled with “gifts” that I can draw from when I need to.

(Is it okay to end on a macabre mental image about dead mice that my cat has brought to us, comparing those critters to the things that diabetes has taught me?  I say yes, and will blame Halloween.)



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