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Posts from the ‘Diabetes Products’ Category

Diabetes 365 Giveaway Winners.

Thanks for all of the comments on Wednesday’s post about burnout and “diabetes overwhelmus.”  There were some great strategies and tips on wrangling in the chaos and living well.

Congrats to the three commenters who won copies of the new book, Diabetes 365, penned by Paula Ford-Martin and Susan Wiener!

Here are the winning entries:

[When I am] Overwhelmed…I look around and count 5 blessing. It can be a good reality check and a notice that it could be worse.

I get most overwhelmed when dealing with a sticky high. I have learned that going for a walk will clear my head and help lower my blood sugar. A two-fer!
Colleen Grogan

Whenever I begin to feel “Diabetes overwhelmus” I remind myself that while it might be tempting to stop caring/trying, it is SO not worth the return of constant thirst (in addition to all of the other symptoms / complications)…there’s nothing worse then the relentless thirst of a high blood sugar! I just try and look at how far I have come, and everything I have to look forward to. When that doesn’t work, I try and see my diabetes educator- after getting to see or talk to her, I always feel like a huge weight has been lifted off of my shoulders.

Bonnie, Colleen, and Erin, I’ll be emailing you this morning with details on delivering your book to you.  Thanks to Paula and Susan for offering copies of their book as a giveaway!


Guest Post and Giveaway: Overcoming Diabetes Overwhelmus.

Today, I am honored to have Susan Weiner and Paula Ford-Martin contributing a guest post to SUM, writing about diabetes burnout and their new book, Diabetes 365: Tips for Living Well.  I’m pretty biased, as I used to work for Paula at dLife (and with Susan), but their book and their message are a tremendous resource for newly diagnosed and veteran PWD alike. 

I’m also excited to host an opportunity for three folks to win a copy of the book.  To enter to win, please leave a comment with your best tip on dealing with “diabetes overwhelmus.”  (Be sure to include your email!)  The giveaway will be open until Thursday night at midnight EST, and winners will be announced on Friday morning. 

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Overcoming Diabetes Overwhelmus
Guest bloggers Susan Weiner and Paula Ford-Martin

The late, great Dr. Richard Rubin had a great knack for turning a quality phrase. “Diabetes overwhelmus” (a.k.a. diabetes burnout) was one of our favorites. Layman’s definition? When the continuous demands of diabetes, and the non-stop flow of diabetes-related information, simply become too much to deal with and you’re ready to throw up your hands and have a mad as hell moment.

The side effects of diabetes overwhelmus are a tendency to become less active in one’s own self-care. So diabetes management starts to slip, stress goes up (along with stress hormones and blood sugar), and then you’re caught in a vicious cycle of bad feelings – both physical and emotional. It’s a crappy place to be.

Now we want to take a moment to pause for a disclaimer here. We both work in diabetes, we support friends and family with diabetes, and we know a lot about the academics of the disease. But neither of us can say we have the intimate knowledge of knowing what it’s like to live with diabetes 24/7.

But stress, the broader idea of “life overwhelmus,” and the negative impact both have on the human body? We’ve got loads of personal experience there. The busier life gets, the harder you need to work to maintain your physical and emotional well-being. Yet most of us let life’s obligations push those things down in the priority list. And even though we’ve both worked in the health education field for many years, we admit we have let stress get the better of our health and well-being more than once in our lives. In fact, we wish there was a frequent flyer program for hospital visits and doctor’s appointments – we’d be Platinum Club Members.

A survey on stress in America found that almost half of the population has experienced a major stress in the prior twelve months, and health problems were cited as the most common source of stress. Thirty-six percent of people living with a chronic illness reported high stress levels in the prior month, with a whopping 60 percent of those in “poor health” reporting those same high stress levels. That’s probably not a surprise to anyone reading this blog post. Being “sick” makes you stressed, and stress makes you sick.

Susan has a patient, Tess (not her real name). Tess has type 2 diabetes, works full-time, takes care of a family, parents teenage children, and is the primary caregiver for her live-in mom, who was recently diagnosed with Alzheimer’s disease. Over time, she found herself completely overwhelmed and bombarded on all fronts. Eventually she stopped taking care of herself. She ate food on the run, sometimes skipped her meals completely, didn’t refill her medications, and didn’t keep doctor appointments.

Tess felt terrible and had high blood sugars. But she went to visit Susan because she was ready to take one small step to get out of her diabetes rut. Susan listened to what Tess’s biggest stressors were and her desire to address them, and they started with one simple goal focused on an issue plaguing Tess – taking time each night to pack up snacks and plan the next day’s meals. Over time, they added more small goals based on Tess’s real life problems, and now she feels in control of her life and health again. She isn’t eating out of frustration or anxiety, and is starting to gain better control over her blood sugar.

It was this small step approach that inspired our latest project, Diabetes 365: Tips for Living Well (Demos Health, 2015). We wanted to help people like Tess come at diabetes from a less intense, more manageable angle. Our intent was not to offer a soup to nuts guide on treating your diabetes; instead each day of the year offers a new start and a focused tip, idea, or action you can take to improve your health and happiness. In other words, it’s not the OED of diabetes, it’s daily Cliff Notes. As our friend Jim Turner says, “Diabetes is complicated and overwhelming enough. I like simple, straightforward suggestions.”

“Bite sized” diabetes goals may be your way out of diabetes overwhelmus. Or, you may find relief in other ways – diabetes support groups, meditation, or reading a daily dose of inspiration here at SUM. But at the root of it all is not letting life get in the way of living, and finding a way to co-exist with all of those personal, professional, and diabetes challenges. In the words of our gracious host Kerri: “I need to remember that I can do this. I can conquer this. I can design this and devour this and delight in this.”

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Susan Weiner is owner of Susan Weiner Nutrition, PLLC, in New York. She is an award-winning author, registered dietitian-nutritionist, and certified diabetes educator. Susan is the 2015 AADE Diabetes Educator of the Year, the 2015 Diabetes Health Monitor LifeChanger award winner, and the 2014 Alumna of the Year for SUNY Oneonta. She is also the 2015–2016 editor for On the Cutting Edge, a peer-reviewed journal for the Diabetes Care and Education practice group of the Academy of Nutrition and Dietetics. Susan advises several nonprofit groups devoted to diabetes advocacy; she is on the advisory board of Diabetes Sisters, and is an educational advisor for Marjorie’s Fund. She is also the diabetes medical advisor for and is on the medical advisory board for dLife.

Paula Ford-Martin is an award winning health writer, editor, and content producer. She is the author of more than a dozen consumer health and parenting books, and currently works as a freelance content strategist and consultant. Paula was part of the core team that created and launched dLife, a groundbreaking multimedia diabetes consumer resource. She served as the Chief Content Officer of dLife for eight years, and her work on CNBC’s dLifeTV—the first and longest running primetime diabetes television show—garnered her 26 Telly Awards. You can learn more about Paula and her work at


ALL NEW Jerry the Bear Revealed.

My daughter loves Jerry the Bear.  And not because he’s this fancy teddy bear aimed at teaching children about type 1 diabetes.  She doesn’t care a whole lot about that.  She likes that Jerry is soft and cuddly and has a friendly face, and that he also needs her to give him food and check his blood sugar.

Birdy getting to know Jerry the Bear. #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

“Like you do, Mom,” she says while she counts the carbs in the snack Jerry is about to have.  She’ll bolus him, feed him, and then drag him outside to her playset, where she and Jerry play in the clubhouse.

It’s not about diabetes, it’s about life.  But as she’s playing with this toy, she’s learning about diabetes in a way that speaks directly to her five year old sensibilities.  Jerry is a powerful teaching tool.

Today, there’s a new Jerry the Bear in town, the brainchild of Hannah Chung and Aaron Horowitz (two Rhode Island locals, making them even more awesome in my Rhody Pride mind).  Hannah and Aaron were kind enough to answer a few questions about Jerry and what’s coming next for the Sproutel team.

Kerri:  How long have you been working on the new Jerry, and what is new about this iteration of the amazing bear?

Team Sproutel:  We’ve been cooking up “new Jerry” in our labs for the past 9 months or so. This new version of Jerry is built from a curriculum centered on general health and wellness education for all kids. We now have expansion packs to customize Jerry’s eduction for kids with type 1 diabetes and food allergies.

Through our work with kiddos with type 1 diabetes and our research into other childhood conditions we began to realize that there are certain pillars of health education that apply to all children. We see this new bear as a platform to deliver high quality health education to all kids.

Kerri:  Why move from an embedded device to Jerry’s new “portal?”  And what are some of the different features of the portal?

Team Sproutel:  Jerry’s new portal is a window into Jerry’s world. As you wave the portal over Jerry’s body it show’s an x-ray view of what’s happening inside. Besides being cool, the new portal enables some neat features. First of all, it means that Jerry is now washable! This is something that parents really wanted because it wasn’t so easy to keep little Jerry clean with all of the playtime he was getting. It also enables us to grow Jerry’s world with new characters. Next year we plan on releasing additional plush characters from Jerry’s world, like his little sister Isabella, who will be brought to life with the same portal.

Kerri:  I see you’ve moved from diabetes into food allergies.  How are you able to have one bear to unite them all?

Team Sproutel:  With this new bear we’ve created a core set of play patterns that are fun for all kids. In order to keep Jerry happy, you have to feed him healthy foods, exercise with him, and keep him nice and clean with a good tooth brushing. This enables us to layer disease specific education on top of Jerry’s core functionality with expansion packs. For each condition we have an accessory (like an insulin pen or epi-pen), condition specific storybooks that teach hard skills, and new behaviors (like a blood glucose level!).

Kerri:  What’s next for our friend Jerry?

Team Sproutel:  Our aim is to continue adding more conditions onto the Jerry platform! We have a long list we’re currently thinking of for our next expansion pack and welcome any suggestions.

Kerri:  How can the diabetes community help move the mission of Jerry the Bear along?

Team Sproutel:  We have so much love for the diabetes community. For the past 3 years it’s felt like we’ve had a new family, one that has supported our growth and loved us unconditionally. We couldn’t be more grateful! It would be incredibly to have the support of the diabetes community to spread the word of what Jerry has done for kiddos with T1D and the hope for what he can do for all children.

Kerri:  And lastly, how can families order their own Jerry the Bear?

Team Sproutel:  We’re currently taking pre-orders on our website for the new Jerry the Bear at a special 30% off discount.

The press release from Sproutel this morning has some great information about Jerry, including Sproutel’s mission to continue to give back to the community.  From the release:  “Best suited for children ages 4 to 9, Jerry the Bear will be available to preorder at $99. Sproutel has pledged 1% of sales to help fight obesity and hunger through the Food Research and Action Center (FRAC). Expansion packs will support finding a cure for type 1 diabetes through the Juvenile Diabetes Research Foundation (JDRF), and food allergies through Food Allergy Research and Education (FARE).”

You can find out more about Jerry the Bear, and his team, through their website.  Or by following @JerryTheBearCo on Twitter.  Or by watching this video about the new and improved Jerry.  Huge thanks to Hannah and Aaron for continuing to remain true to the cause and the community, and for creating a profoundly effective teaching tool that you can hug.

Guest Post: Does Diabetes Tech Assist or Insist?

Several years ago, I “met” DCScribe (who remains mostly anonymous) on Twitter and he and I did not see eye-to-eye on much, aside from sharing the diagnosis of type 1 diabetes.  For a while, the lack of common ground frustrated me because I identify with and bond over experiences, but then I realized the alternative viewpoints he provided were not only important but essential to my growth as an advocate.  It is good for me to hear perspectives outside of my comfort zone; they help keep me realistic.  And when I had the chance to sit down and have lunch with DCScribe several months ago, it was really nice to confirm that two people who might butt heads constantly can still share a mutual respect … and a lunch table.

He was diagnosed with type 1 diabetes at 8 months and has lived with T1 for more than 50 years. Over the course of his career as a journalist, he has worked as a reporter in Washington for 26 years covering the White House and Congress as well as conflicts overseas, hurricanes including Andrew and Katrina, and every presidential election since 1988.  He’s recently embarked on a new career in global health that will take him to the frontlines in the battle against Ebola, malaria, AIDs and other scourges around the world.

And today, DCScribe is taking a turn here at Six Until Me to talk about diabetes technology as something that assists or insists.  Read on for more.

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The older I get the more I’m struck by how the decisions I make in so many facets of life are deeply informed and influenced by my long career refereeing soccer at the highest levels.  It’s even shaped my relationship with diabetes technology. And yeah, I can hear the rumbling. “Holy hell. Where’s this going? That dude ought to check his ‘sugar.’”

But it does. And here’s why. Reffing has helped me understand the difference between someone (or something) who “assists” and someone (or something) who “insists.”

It’s a question every diabetic should ask when making a decision about the technology you need (and don’t), how to use it and whether it means being in control or under control. Understanding where that line falls and enforcing it is central to my D management and my easy, stress-free life with the disease.

I speak only for myself, of course, and concede there might be gaps in my perspective. After all, only two other people outside my wife and kids and my doctor knows of my condition and my identity. My wife knows I use a pump but doesn’t know the brand or really how it works. I never share my BGs with anyone, though I’ll offer vague updates at home such as, “I’m gonna wait a bit to eat dinner.” It works for me; I’ve never had a single bad day from diabetes in more than 50 years. Sure, some days are better than others but not one has been truly bad or difficult.

There are lots of reasons, but an important one is my comfortable but always skeptical relationship with technology.

I have no idea if I’m different in that respect. But from scanning the Diabetes Online Community twitter feed and beyond, I wonder if enough people asking the question about technology’s proper place and power. (Here’s one place where it was asked and discussed publicly. It’s a cautionary tale and luckily I can’t ever imagine finding myself in a similar place.)

At the same time, I’m not immune from the pull of technology. I use a pump and have for 16 years (though my current pump is 7-years-old. Let’s face it: a pump is little more than a tricked-out syringe.) It’s why I got my first blood glucose meter in the 1970s and have used one ever since (though my one-and-only meter today is 9-years-old.) It’s why I’ve never used a continuous glucose monitor and never will. I’m constantly examining that distinction and that, along with my natural skepticism keeps me from chasing the latest, often imperfect, shiny object until its use and accuracy are proven.

This also fits with my belief that too much information can be more of a burden than a savior, especially if that information is imperfect. I wonder too if a fixation on technology diverts attention from proven and powerful “human factors.” For me, the basis of my success and easy life with D is rooted in discipline when it comes to food, making sure I’m physically fit and a refusal to ever use diabetes as an excuse for anything at any time.

Which brings me back to the beginning and “the pitch.”

In soccer, most games have three refs (though in a lot of my games there’s also a Fourth Official.) The Center Ref is the only one with a whistle. He or she prowls the entire field and is the one person responsible for fair play and safety; for keeping the official game clock and chaos to a manageable level. The Center Ref is the ultimate and singular authority. All decisions start and end with him or her.

The Center Ref uses his or her experience, training, knowledge and physical fitness to manage the game, navigate nuances and the many “gray areas” woven into the Laws of the Game and to ensure the rules are applied in a fair and consistent way.

But the Center isn’t alone. Along for the ride are two Assistant Referees, one on each sideline. Without ARs, the Center’s job is difficult if not impossible, especially on a regulation field that measures 120 yards by 80 yards.
The ref crew is a team in the truest sense, but to work well, everyone understands this: Good assistant referees never “insist.” Their job is to “assist.” That means there are times when the Center Ref will wave down a flag (or tell an AR through the headset) because the Center Ref is in a better position or has more experience or a different understanding of the larger picture.

Replace “AR” with “diabetes technology” and you get the idea.

That’s why I seldom follow the number my bolus “wizard” spits out. Its why, when my meter says I’m 70 mg/dL and I’m getting ready to ref a game that will require running upwards of seven miles and demand thousands of decisions, including a few that are game critical, I don’t hesitate. I appreciate my meter’s “assistance,” jam a granola bar in my mouth, wash down with a gulp of sports drink and go. But not always. Sometimes I simply walk on the field and start the game.

I seek assistance in carefully chosen places. That makes perfect sense to me. It doesn’t mean I’m anti-technology.

I’m a guy, so I’m hard-wired to get all tingly from even most dubious technological “innovation.” It should be no surprise that I would have instantly given up insulin before surrendering my satellite phone or the solar charger for my up-armored laptop when I was reporting overseas. In the early 1980s I had a very public and very serious relationship with my 30-pound Teleram “portable” computer that I happily lugged from one corner of the country to the next so I could transmit stories to the Mothership at the wondrous rate of 1,200 baud per minute.

And yet, I still use a 5-year-old iPhone and have zero urge to change because … it works.

Technology is great. I love it. I use it – a lot of it. But skepticism is more useful for me, as is enough patience to make sure the latest, greatest bit of technology works as advertised, and that whatever tech I use in my ride with diabetes knows its place, no matter how hyped or magical or shiny.

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Thanks for your perspectives, DCScribe.  And for the link to the oldest computer ever. 

Device Frustration.

Am I a crumb because I want to rip my devices off sometimes and throw them into a great, blue hole?  Like this one?  My skin is so irritated by the adhesives and intrusions of my insulin pump and my CGM that the desire to heave them into this abyss is intense.

the Great Blue Hole – I look at pictures of this thing all the time

I hate the bulk of them.  The amount of room that my devices take up on my body and the trauma they have a tendency to leave on my skin.  I simultaneously absolutely love the convenience of them.  The fact that I can take teeny, precise doses of insulin without using a magnifying glass on a syringe or when the alarm goes off in the middle of the night, alerting me to a 70 mg/dL that was sliding towards LOW … this is the stuff that makes wearing diabetes devices worth it for me.

The pros outweigh the cons by a long shot, but the cons are a thorn in my side these days.  Or, more accurately, a wicked itch on my skin.

I took my insulin pump off one morning because the site was so sore, and so red, and the mark it left on my body was like a little diabetes bullet wound.  I have a high threshold for irritation and itch, but this site was terrible and after pulling it out, I didn’t have anything even close to resembling the desire to put a new one back in.  I went on injections for 12 hours before realizing that being on the road wasn’t doing my blood sugars any favors (I was having trouble bringing myself back under 200 mg/dL – rage bolus, anyone?), so once my Levemir injection timed out, I reluctantly put a new pump site in.  Admittedly, blood sugar control for me these days is better on the pump.

It’s not just my pump sites that are irritating these days.  This morning, I noticed that my CGM site had become red, itchy, and irritated OUTSIDE OF THE TAPE.  What the actual fuck?  Usually, I have a skin response underneath where the sensor actually is, or where any of the tapes connect.  But this round, I have a proximity rash thanks probably to continuously compromised skin (linking to it here because it’s too gross to put on the blog).  So now I’m getting a frigging rash in the places where the sensor isn’t even touching?!  I’m in a hard place of feeling safer with access to CGM data but access to CGM data produces a fierce itch.

I need a breather.  But taking one leaves me exposed.  HEAVE this shit into the great blue hole!  That’s what I’m doing mentally, chucking all these things that make my skin hurt and itch into the watery hole and watching them sink to the bottom.

… but then diving in to rescue them.  Because I hate injections and I hate going to bed without seeing my CGM trend arrow.

Pump Peelz Giveaway Winners!

Time for the Pump Peelz Giveaway winners!  The original contest rules are from earlier this week are here, and the entries came in through blog post comments and Twitter. Some were poignant, some were silly, and all were written by people touched by diabetes.

Ahem … here we go.

All were so awesome
Random number thing picked three.
These are the winners:

It’s midnight again
Sugar monsters sucking life
Double-stuffs for win!

- Susan C.

Diagnosed last year
The only thing he can’t do
Is make insulin

- Maria Conroy

Winners!  I’ll be connecting you with Scott from Pump Peelz to receive your prizes, and for those who didn’t win, you can still use the “SixUntilMe” discount code at Pump Peelz for 15% off your order. Thanks for playing, and thank you so much to the team at Pump Peelz!!!

Balancing Diabetes: Siblings.

Back in March of 2014, my first book was published by Spry Publishing and it features a number of different voices from the diabetes community.  Today, I’m sharing an excerpt from Balancing Diabetes titled “Siblings,” which describes what diabetes looks like from the perspective of my brother and sister, and also from some siblings of people in the DOC.  Thanks to Spry and the diabetes community as a whole for supporting this book!

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I don’t have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households.  Once the vials of insulin moved into our refrigerator’s butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of a half gram of actual nutrients and then a whole pile of crap).  Our eating patterns changed as a family and Diet Pepsi and food scales replaced the snack cupboard of days gone by.  My mother hid the ice cream sandwiches in the hollowed-out box of broccoli in the freezer.  She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet.  She was a food-hoarding squirrel, with delicious treats in every obscure corner.

I viewed this as a clever approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy.  But for my brother and sister, both with perfectly capable pancreases, the lifestyle change wasn’t necessary.  Didn’t they get to have snacks, still?  (My brother confirmed that he, too, was searching for the “good snacks” after my diagnosis.  “I had to look in the freezer for cookies and above the broom closet for the special sugary cereals,” he said.)

What I failed to realize then is that my diabetes didn’t have to be my siblings’ diabetes.  There was so much about their lives as the siblings of a child with diabetes that I couldn’t even wrap my head around.  I didn’t know what it was like to have your sister come home from the hospital, now playing host to something no one could see, and garner so much attention (for better or for worse).  I’ve talked to some siblings of kids with diabetes and heard about the guilt.  “I felt bad for wishing I was sick, too, because I was jealous of the attention.”  Or the worry.  “Was I going to get diabetes, too?”  Or the anger.  “I am sick of her diabetes being the sole focus of our family.”  Or, just plain fear.  “Will diabetes hurt my sibling?”

My brother, Darrell, was thirteen when I was diagnosed with diabetes, and old enough to remember some of the details that I can’t recall.  “I remember Dr. L [our pediatrician] coming out of his office, the one with the patterned wallpaper that had giraffes and monkeys on it, and he was holding a little plastic cup with what was your urine sample.  We had both gone for check-ups on the same day.  He told Mom that he wanted to do some additional testing for you, so Mom dropped me off at soccer practice and proceeded to take you somewhere for tests.

“I remember being picked up from soccer practice and leaning through the open passenger side window. You were in the back, dressed in a little white knit pom-pom hat and looking rather dour. You looked very small to me.  I believe it was there that Mom told me what the verdict was, before I even got into the car. Seeing what type of memory it has indelibly put on my mind, whether it’s truly accurate or embellished by the passing of time, I knew it was something major. I knew it was a ‘difficult time,’ and it burned right in.”

My little sister, Courtney, was only five when I was diagnosed, so as far as she is concerned, I’ve always had diabetes.  “I was so little when I found out that you were diagnosed with diabetes.  All I remember is Mom and Dad telling me that you were sick.  I didn’t know what diabetes was until I was a little bit older, and could understand better.  At that time, they told me that you had to test your blood sugar and then get a shot.  I thought it was an allergy shot,” she said, remembering her own experiences as a kid with severe allergies.  “But Mom said it different, that you were injecting a special medicine called ‘insulin.’”

Laura Watson was in fifth grade when her sister, Jacquie, was diagnosed.  I was in the fifth grade; Jacquie was in the seventh. It was fall. My mom was encouraging Jacquie to eat as much as possible because of recent and dramatic weight loss. I remember standing in the pharmacy section of the local grocery store with my mom to pick up ketone strips. Shortly thereafter, Jacquie was just kind of gone and I got updates through my parents. A lot of what I remember about those updates involved oranges and syringes and reassurances that Jacquie was going to be okay.  That year in school I had all the same teachers Jacquie had two years before. It was their reaction to the news of the diagnosis that made me realize what a big deal it was.”

My brother did realize that diabetes was something “big,” but at the same time, it wasn’t a topic of much discussion.  “We have only talked about things that impacted you negatively, like when there was a setback or an issue. I don’t believe we’ve ever had a long, positive conversation, where you got a new pump or you had a good checkup.”

Like Darrell, Laura’s memories of growing up alongside a sibling with diabetes weren’t rooted in deep discussions and serious chats about disease management and its influence. “I don’t remember it being an intrusive force, but I don’t think I filed it under ’no big deal’ either. Rather, it always seemed to be something that Jacquie had under control, even if it meant a lot of work to keep it under control. I suppose I always assumed that my big sister knew what she was doing no matter what she was doing. Whether it was a decision to perm her hair, tight roll her jeans, or give herself an injection where and when, I applied the ‘big sister’ rule.”

“I surely remember Jacquie having lows and highs and in some cases being exhausted the next day from a middle-of-the-night low,” added Laura, recalling these moments.   ”If there were cereal bowls and/or almost-empty Coke cans around when I got up in the morning, I could usually guess that Jacquie would be sleeping in.”

Darrell also had memories of my hypoglycemic aftermath, with only one, clear memory of watching me in the midst of a low.  “There were moments of fear, as I once was with you during a low and you told me that you saw car headlights coming out of your hands if you held them up to your face, like cars racing towards you on a dark highway. I had nothing to compare it to, so that was frightening.”

Funny thing is, I remember that symptom.  When I was a little kid, my hypo experiences were very heady and confusing.  I distinctly remember many lows where I’d see things, borderline hallucinations, and my fear of them was all-consuming.  One time, while our babysitter Kim was watching my brother, sister, and I, I remember sitting in the hallway with my back against the wall, screaming about those cars coming out of my hands.  I remember the headlights zooming towards me, and a panicky feeling that I would be hit by these cars.  It was irrational, but my brain was shifting the glucose reserves around, preserving the parts of my brain that were necessary for autonomic processes, such as breathing and the beating of my heart.  Rationale fell by the wayside as my body tried to make sense without glucose in my cells.

As bizarre as this feeling was to experience, I at least had an idea of when it was starting, and felt the relief when it began to end.  My brother and sister were left just to watch and wonder what the hell was going on.

“I think the strongest impact that diabetes has had on you is that you became very aware of your own mortality at a very, very early age. Here was something that had, and always will have, the potential of taking years from you, or your life itself if it’s not managed properly.  It’s an everyday cumulative tightrope,” said Darrell, when asked about how diabetes has affected our relationship.  ”Some people would take that and internalize it, where you took it and swung the momentum into a force of motivation.  Your siblings know how you think, being the closest thing to a ‘twin,’ and even though I know you are absolutely terrified at times, you’ll still face it head on.”

I also spoke with Jackie Singer, the twin sister of Mollie Singer, who lives with type 1 diabetes.  “When Mollie was diagnosed, it was as if I was diagnosed, and our whole family was diagnosed,” she said.  “We really did live, breathe, and eat as a family and that meant doing what Mollie could do when Mollie could do it. I never really worried about becoming diabetic, but there were many times when I wish I was, because then she wouldn’t have to go through what she had to go through by herself.

“Mollie and I were inseparable before she was diagnosed and we are the same way now, if not closer. When we were in school, we had all the same classes from kindergarten through college.  I was as knowledgeable as her about diabetes, so I was always by her side in case of an emergency. When we were little, we always shared a bedroom and there were so many nights I would stay awake to make sure she was okay.  It’s terrifying to think that one morning I would wake up and she wouldn’t.  I became her protector, always aware of changes in her breathing or sleeping, setting alarms to remind her to test her blood sugar at the appropriate time, grabbing juice and a snack for her when she couldn’t, and on two occasions before we were ten years old, setting up the glucagon kit and calling 911 while our Mom held Mollie in her arms after she experienced an episode with dangerously low blood sugar levels.” 

Diabetes is a disease that affects the whole family.  It’s not just the person who is receiving the injections or pump infusion sets or finger pricks who’s carrying the full weight of diabetes.  I don’t know if my brother and sister understood what diabetes meant when I was first diagnosed, and if any of us understood just how big the words “without a cure’ really were.   But I know that we learned about diabetes as a family, and dealt with it the same way.

There is that dance that occurs between my brother and sister and me, that weird discussion that never really takes place where siblings acknowledge that there is something serious in play, but no one wants to talk about it so plainly.  We didn’t sit around the breakfast table and run commentary on the state of my fasting blood sugars, but diabetes was always present and always somewhere on the table, literally and figuratively.  If it wasn’t my mother telling me to eat all of my breakfast because I already took insulin for it, it was her reminding me to grab my lunch bag.

There was one time—only once—that I felt angry.  Jealous of my healthy brother and sister and the fact that their days didn’t start and end with needles.  I was about fourteen years old and pouring out my angst into a fabric-bound journal, scribbling in it madly with a ball point pen.

They don’t have to worry.  I’m jealous of that.  But I’m worried.  I’m worried about what my body will be like in like two decades, after all that time with diabetes.”

I thought I was alone in that worry.   It wasn’t until I was deeply immersed in sharing my diabetes life with the Internet that I truly grasped how much my older brother watched and understood.

In May 2005, my first evidence of diabetic eye disease started to show in the form of cotton wool spots.  Noticed during my yearly dilated eye exam, the doctor saw a few spots of swelling of the surface layer of the retina, when a part of the eye isn’t provided with enough oxygen due to a damaged blood vessel.  On the photos of my retina, it looked like puffy spider webs had taken up residence in my eyes.

Trying to acknowledge and understand this first diabetes-related complication, I wrote a blog post about the experience of “finding out,” and explained this new situation as best I could, while trying to remain positive.  Folks who were reading my blog at the time left very kind, supportive comments and their words soothed me, reminding me that this wasn’t “the beginning.”  But it was the comment my brother left that cracked the concept of complications wide open for me, assuring me that there was life to be found after this diagnosis, too.  And I’d better damn well seize it.

He wrote:  “When we were little in stature, the snow would cover our backyard like a puffy comforter. We would go out into the backyard to build snow forts, to go sledding, and to eat a majority of it.  We also had this thing where we would try to go as long as possible without damaging the ‘virgin’ snow, keeping to our trails and cordoned off zones, in an attempt to stave off ruin. We were a prepubescent SnowPeace, minus the trademark galleon.  It would only last for so long, before the snow would melt, no matter how hard we tried to preserve it with the no-walk, no-eat zones, but we knew there’d be more snow to cover up the previous damage we had done.  You’ve done so well, for so very long. The way you think and operate, I see a snowscape for you for a very long time … just don’t forget to eat some snow once in a while.”

Diabetes isn’t just a balancing act for the people living with it, but the people living near it and caring for people with it.  I never knew that my brother noticed what I did to take care of my diabetes, and I hadn’t thought ahead to how he would be impacted by any future issues.  He wasn’t feeling the highs and lows, but he saw them and they left an imprint on him, too.  Now that my brother has two children of his own, he’s mentioned that diabetes is on his radar as a parent, not just as a sibling.  “I can’t help but think that it was the simple roll of the genetic dice.  I keep tabs on my children’s weight and how many ounces of fluids they drink as opposed to how often they go to the bathroom,” he admitted, when I asked him about watching my niece and nephew for possible symptoms.

My sister agreed, confirming that my diabetes was an ever-present force, but something that lived on the peripheral of our lives.  “Diabetes didn’t really affect my childhood.  There were food changes that Darrell and I had to adapt to, with a lot of the sugary foods we used to eat being cut out.  Lucky Charms cereal was replaced by Cheerios.  Regular lemonade was replaced by that Crystal Light stuff.  We still ran around the house, though, and got into trouble.  Picked on one another.  Diabetes didn’t really change much, in that sense.”

Laura found herself in a similar situation as a sister, focusing on the hard-to-pinpoint effect that diabetes may have had on her life.  “I don’t feel it’s had an effect, but maybe that’s how it’s had an effect. Maybe Jacquie wishes that it were more front and center for me, or that I would have been more helpful when we were younger. She was kind enough to participate in a Science Fair Project for me in the 10th grade. She was my only participant. I basically made her check her blood sugar, jump on the exercycle that was in our kitchen, and check her blood sugar again. I made it to the State Science Fair that year and was placed next to participants who were proposing cures for cancer and ways to reduce the spread of oil in the event of an oil spill. I was surprised because, to me, it seemed I was just presenting a day in the life of my sister and her blood sugar levels. It’s not until we started to spend more time together as adults—even if just on vacation—that I feel I’m really understanding what a burden she’s been carrying around.”

So what do you do, if you’re the sibling of a person with diabetes?  It’s not your disease to manage, but it resides in a person you care deeply about, so it becomes yours, in a sense.   Jackie found that she could make the biggest impact, and be the best supporter for her sister, simply by being there for Mollie. “The comfort of knowing they’re not alone and that there’s someone who’s got their back no matter what, makes their struggles a little easier to bear. Sometimes that’s all anyone needs to help them get through the day.  For someone with diabetes, it’s always one day at a time.”

Laura and my siblings agreed with Jackie, but also mentioned the need to be there for the moments of acute need, such as low blood sugars.  “I don’t know if it’s best to make a big deal out of it or to try to make life seem more normal by not making a big deal out of it,” said Laura.  “All I knew to do was to be there with a juice box, if needed.” 

Darrell concurred.  “Be ready to help if a low or high occurs, as I know your greatest fear is to have that happen alone, with no one to assist when your body and mind aren’t cooperating.  Young siblings should know how to call 911 and/or parents if there are issues.  Other than that, treat them no differently. There’s so much change and so many routines a person with diabetes has to do to work to be healthy, I’m sure they’d appreciate just being a brother or sister to them.”

He added, “That and look beneath the frozen snap peas for the M&Ms.”

*   *   *

You can purchase a copy of Balancing Diabetes if you’d like to read more.  As always, thanks for everything.


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