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Diabetes

Everday Carry: Type 1 Diabetes

In the first of a series, we asked four people with type 1 diabetes to open their bags and show us the gear they can't go anywhere without.

Medication is only part of the picture when it comes to dealing with chronic illnesses. In many cases, self-care involves a host of other items that you’ll need to have on you at all times.

So inspired by the Everyday Carry movement, we asked four people with type 1 diabetes what’s always in their bags—the essentials that they bring with them everywhere, no matter what, whether it has to do with diabetes or not.

Henry Jensen, student

Henry Jensen’s Everyday Carry

I decided to start close to home. My son Henry was diagnosed with type 1 diabetes at the age of five, and he’s now 11. He’s a very active kid, doing folkstyle wrestling and Tae Kwon Do after school, singing in the choir and rampaging through the woods with his friends in endless NERF wars, so he needs an everyday carry that’s durable and portable.

Henry Jensen.

Henry has two electronic devices, his Dexcom continuous glucose monitor and his Omnipod insulin pump. The Omnipod is controlled by a special-purpose device about the size of a beeper, while the Dex just talks to his iPhone 8 via Bluetooth. Both have cases on them to protect them from drops and smashes.

When Henry is low, he treats with glucose tablets, which he keeps in a plastic tube. We order them by the jar from Amazon.

He also carries a lancet, in his case the Accu-Check FastClix, to draw blood, and test strips – his Omnipod device also doubles as a blood glucose tester.

In case of emergencies, he has a Glucagon – this is a single-use shot that basically pumps a life-saving dose of sugar into his bloodstream. He’s only had to use this once, at school, and it was pretty traumatic.

Also in the bag is ten dollars of emergency cash and a lucky bullet casing he found on a hike in the woods with his cousins.

He carries everything in the Henry Hero fannypack he designed for Myabetic, a company that specializes in cases and containers for diabetes supplies. He likes it because it’s spacious but has a fairly low bulge profile.

Rob Howe, podcast host

Rob Howe’s Everyday Carry

Rob lives in Dallas, Texas and hosts the Diabetics Doing Things podcast. He was diagnosed at 16 and has been managing his Type 1 for 13 years. After graduating high school as valedictorian, he went on to the University of Colorado on a basketball scholarship and spent a season playing with the Washington Generals against the Harlem Globetrotters. He started the podcast to share inspiring stories of people with diabetes doing amazing things in the world.

Rob Howe of the Diabetics Doing Things podcast.

Most of the time, Rob keeps a pretty light bag – just a glucometer and test strips in the front pouch of his backpack. He uses the Medtronic 670g insulin pump with CGM so typically doesn’t need to pack any additional supplies.

Living in the city, it’s easy to find a 24 hour store for juice or candy to treat lows.

When he travels, though, Rob carries a more extensive loadout.

He uses a cross-body fanny pack (“2019 is a great time for people with diabetes because the fanny pack is back baby!”) – to carry extra insulin pump sites, reservoirs, CGM sensors, insulin vials, syringes, Skin-Tac adhesive wipes, and tape for CGM sites. For weekend trips, he brings one extra of each, but if he’s gone longer than a week he brings one and a half times the normal supplies he’d use at home, just in case.

2019 is a great time for people with diabetes because the fanny pack is back baby!

“Being a person with Diabetes is a lot like being in the scouts,” he tells me. “‘Be Prepared'” should always be the motto.”

Carter Clark, photographer

Carter Clark’s Everyday Carry

Rock climber and photographer Carter Clark spends a great deal of time off the beaten path. From helping grow Panama’s Kalu Yala Institute, a sustainable village being built in a river valley to shooting for firms like Hipcamp and Patagonia, she’s always on the go.

As such, her everyday carry is a bit leaner and less dependent on technology than many other diabetics. Her climbing bag typically contains a tube of glucose tablets, a bottle of insulin and a syringe for emergency injections, a blood glucose meter, test strips and a lancet.

“Thats what I’m usually carrying around and what gets thrown in my climbing bag on a normal day out.”

She doesn’t use a CGM, preferring to trust her body’s awareness of her highs and lows to cue finger testing. She also uses a Medtronic insulin pump.

Kyle Banks, actor

Kyle Banks’ Everyday Carry

While performing in Disney’s traveling musical version of The Lion King, Kyle Banks started experiencing odd vocal issues and lost his voice. After a visit to an urgent care clinic and a blood test, he was diagnosed with type 2 diabetes and prescribed prednisone.

Kyle Banks.

When he returned home to New Orleans, though, his mother felt something was wrong and urged him to see a specialist, who determined that he actually had type 1.

After learning how to manage his condition, he’s returned to the stage and started a nonprofit, Kyler Cares, to provide supplies to young T1D children in need.

“Fanny packs are all the rage these days, so I usually alternate between three of my favorites.”

In his pack, Kyle carries the Omnipod remote, as well as test strips and a lancet for manual blood sugar checks. “That reminds me that I need to change my lancet.”

He carries candy for lows, either mints or fruit snacks. He also packs a juice box for “extra stubborn hypos.”

Finally, a USB cord is vital for charging his phone, which is paired to his Dexcom CGM.

Chronic Illness Diabetes Instagram Roundups

8 Inspiring #ChronicallyIll Women To Follow On Instagram

By documenting their lives with a health condition, these incredible women are not only fighting stigma and raising awareness, they're helping build communities.

From moms toting perfectly (and expensively) dressed toddlers to travel influencers posting bikini selfies at 5-star tropical resorts, Instagram has no shortage of people showing off curated, unrealistically perfect lives. But there are also amazing activists on social media trying to do something radically different: show the world, in raw, vulnerable detail, what life is like with a chronic illness. These people represent a new wave of anti-ableist sentiment on the Internet, working to raise awareness and fight for other chronically ill people, while also showing that life with a health condition is like any other: a mixture of the good and bad, the beautiful and the ugly, and the painful and the pleasurable. If you want to follow Instagram influencers who help you celebrate life, with or without chronic illness, here are 8 amazing women you should follow.

Chronic Zebra

ChronicZebra

A graduate student in dance therapy, a field usually dominated by able-bodied folks. Instagram user ChronicZebra documents her journey with several chronic illnesses, including Enlers-Danlos Syndrome, Mast Cell Disease, and Dysautonomia, among others. ChronicZebra serves as an example that people with all sorts of conditions can get outside and do what they love, and that they can use resources to help them (like canes, wheelchairs, etc). Follow Mairead for a blend of health tips, real-life experiences, and a healthy dose of feminism and activism, plus some beautiful nature pics.

Just A Little Suga

Ariel Lawrence, aka JustALittle_SUga

Ariel Lawrence, who goes by JustALittle_Suga on Instagram, lives with diabetes and fights hard for representation of people of color in the chronic illness community. “I’ve lived with Type 1 Diabetes for 12 years,” she says.” I’m also a native New Yorker who is passionate about addressing educational inequality, finding a good street festival and West African dance.” Advocating for “diabetics on the margin,” like herself, Ariel’s Instagram is an empowered space which aims to live the change Ariel would like to see.

You Look Okay To Me

Jameisha Prescod, aka YouLookOkayToMe

Jameisha Prescod, or Jam, is a documentary filmmaker in London, who also lives with lupus and other conditions.  She started her account in 2014, and today, it is one of Instagram’s best spaces to connect with other people dealing with chronic illness. She says: “ Not only has the platform started to raise awareness for chronic illness, it’s become a community for chronic illness patients to uplift  and support one another which I think is equally as important as raising awareness.” Find her at YouLookOkayToMe on Instagram.

Leah Javon

Leah Javon

Taleah Javon, who goes by Leah, is a 23-year-old with the chronic illness works, including lupus, Sickle Cell, Crohn’s disease, fibromyalgia, and asthma. Although Taleah has been sick for seven years, a thread of powerful optimism and willpower extends throughout her account. She is graduating with her BS in Psychology this year and wants to be an advocate for sexual assault victims. Follow Taleah for honest posts about her struggles, and a living example of body positivity: she refreshingly embraces the beauty of herself and others, without reinforcing beauty myths or perpetuating shame. Find Leah Javon on Twitter @LeahJavon, and on Instagram.

Abby James

Abby James, founder of TheTiredGirlSociety

Abby James is a wife and mother from Perth, Australia, living with multiple chronic diseases, but she writes especially about Chronic Fatigue Syndrome (CFS), and how she balances the needs of her illness against her needs as a woman, mother, and writer. On her personal Instagram account, she posts beautiful pictures with an ethereal, vintage look, but it’s her founding of the Tired Girl Society that put her on this list. A platform for women with chronic illnesses to connect to one another, the Tired Girl Society gives spoonies a way to connect to one another, and find strength in solidarity. “I truly believe there is life to be lived and celebrated alongside the limitations that chronic illness causes,” she writes. “The Tired Girl Society society is a way to offer that as a safe, vibrant online space.

First Prioritea

Tatiana, aka First Proritea

Tatiana’s various autoimmune diseases, which include psoriasis and digestive problems, caused her to turn to a mostly fruitarian diet for relief. Under her First Prioritea Instagram account, she shares great juicing recipes, as well as tips on what fruits and vegetables to add to your diet to manage flare-ups. Her tips may not work for everyone, but if nothing else, you can see some darn beautiful fruit on her feed.

Fight2Breathe

Cayleigh Haber, aka Fight2Breath

Fight2Breathe is the Instagram account of Caleigh Haber, a two-time lung transplant survivor, who now advocates for others with breathing issues and cystic fibrosis. Through her Instagram account, she shares her recovery story, and aims to raise awareness of CF. It’s the perfect account to look at when you are feeling down about the impact chronic illness can have on your health, because Caleigh is an example of how to face those challenges with bravery and grace.

Prettiest_Unicorn

Elizabeth Kestrel, aka Prettiest_Unicorn

Elizabeth Kestrel, who has cystic fibrosis, fills her Prettiest_Unicorn Instagram account with a fun mix of cosplay and chronic illness awareness, with a few cat pics thrown in for good measure.  She talks about her disease while also discussing the other things that make her life worth enjoying. Her disease doesn’t define her, but it is an important part of who she is, and she communicates that with sincerity, vulnerability, and a wide stream of humor and fun.

 

 

There are many ways to be a chronically ill person, and no wrong way to engage with your own disease. Each of these influencers has taken different routes to share their story and connect with others; hopefully among them you’ll find an account you really enjoy. Social media can be a powerful tool for change, and each of these people has decided to use it to help them make a difference. There’s nothing more incredible than that.

Advice Explainers

How To Deal When You’re Diagnosed With Type 1 Diabetes

So you or someone you know has been diagnosed with Type 1 Diabetes. Here, in plain English, is what you need to know.

Type 1 Diabetes (often abbreviated as T1D) is a bummer. If you or someone you care about has been recently diagnosed, I’m sorry.

But diabetes doesn’t have to slow you down. It doesn’t have to end anything. You can still do precisely what you want to do; you just have to understand what you’re dealing with.

Here, in plain English, is what you need to know about Type 1 Diabetes, and how to live with it.

What is Type 1 Diabetes (T1D)?

What Islets of Langherhanslook like.

T1D is an autoimmune disease. That means your body mistook part of itself for a bad, sickly thing, and attacked it. In this case, your body is attacking clusters of cells in your pancreas called the Islets of Langerhans, which create insulin, a hormone that regulates how much glucose (sugar) is in your blood.

Too much glucose poisons your blood, so if your pancreas can’t make enough insulin, you need to inject yourself with artificial insulin to stay alive.

How Much Insulin Should I Take?

Consult your doctor, but in general, every time you eat, you’ll calculate the correct amount of insulin based on the how many grams of carbohydrates you’re eating. This is called an Insulin-to-Carbohydrate Ratio, or “IC Ratio.” For example, my IC Ratio is 1:12. That means I give 1 unit of insulin for every 12 carbs I eat or drink.

What Happens When My Blood Sugar is Too Low?

Low blood sugars (“hypoglycemia”) happen when you have too much insulin in your system. Hypoglycemia you dizzy, anxious, hungry, and probably quite sweaty. In the worst cases, low blood sugars can lead to seizures. Not much fun.

You treat low blood sugars by consuming sugar, and because lows can strike at any time, you should carry sugar with you at all times from now on. Some folks carry glucose tablets, others lug around juice boxes. I prefer gummy bears.

Meet two of your new best friends. Creative Commons photo: Robert Occhialini

What Happens When My Blood Sugar is Too High?

High blood sugars (“hyperglycemia”) strike when you don’t have enough insulin in your system. Since your blood is poison when you’re hyperglycemic, your body tries to replace its fluids, which makes you very thirsty and prone to peeing a lot. Highs, if left untreated, can lead to Diabetic ketoacidosis (DKA), which is dangerous.

You treat highs by taking the appropriate amount of insulin—again, consult your doctor. Drinking water and going for a walk will help the insulin do its work.

Why Did My Body Attack Itself? Why Do I Have T1D?

We don’t really know. Genetics play a role, and viruses can be “environmental triggers,” but science has given us no clear or final answer yet.

What’s Been Taken Away From Me?

Very little. You can still do pretty much anything you wanted to do as a non-diabetic. You can be a doctor, a scientist, an artist, or an NFL player. You can still go hiking, travel the world, and raise a family. You’ll be OK!

Ask Abby Pepper, who biked from coast-to-coast when she was 18 after being diagnosed. People with T1D can do anything.

Could Anything Have Prevented This?

No. This is not your fault.

I’m Feeling Sad, Angry, and Confused After My Diagnosis. Are These Feelings Typical?

Yes! Diabetes sucks. There’s no getting around it. There’s a lot to learn, some suffering to undergo, and a lot of work to do. This means you’ll need to be disciplined and keep your spirits up. But not right away. It’s totally okay—and even normal!—to be sad, angry, and confused for a while. To show yourself that you’re not alone, find a community of diabetics as soon as you can.

Where Can I Find a T1D Community?

You have options! If you’re interested in walks, bike rides, runs, galas, cookouts, etc., The Juvenile Diabetes Research Foundation (JDRF) holds plenty of events. The American Diabetes Association (ADA) does, too. Here’s their calendar.

T1D communities are flourishing online, too. If you want to read personal essays from T1Ds about everything from sports to fashion to diabetes research, I recommend Beyond Type 1 and Type One NationFolks (the site you’re reading!) has a lot of inspiring stories about people with diabetes in its archives too.

If you have specific questions, or just want to get involved with some T1D forums, you can find support groups here, here, and here.

Do I Need a New Doctor?

Yes.

You need to find an endocrinologist (“endo”), who will be your “diabetes doctor,” helping you figure out your treatment, setting you up with a diabetes educator, and writing your prescriptions.

Also, make sure your primary care doctor knows all about diabetes. This might seem like a no-brainer, but I’m wary about this because of personal experience. A few years ago, I moved to a new place and met a new doctor, who asked repeatedly, “Are you sure you have diabetes?” I was pretty sure, after 7 years of the disease. He remained suspicious.

I didn’t go back. You can’t be treated by someone who doesn’t understand your condition.

Diabetes affects every facet of your health. Make sure that your primary care doctor’s knowledge of T1D is broad and deep.

This glucose monitor is one of the gadgets you’ll need to familiarize yourself with if you have T1D. Creative Commons photo: Mike Mozart

What’s the Difference Between Type 1 and Type 2 Diabetes?

You’ll probably have to explain this a lot.

Basically, Type 1 is an autoimmune disease, and Type 2 is not. Type 2 Diabetics develop a cellular resistance to insulin, whereas Type 1 Diabetics lose the ability to produce insulin altogether.

In short, T1D has to do with insulin shortage, and T2D has to do with insulin resistance.

Can I Still Eat Sugar?

Yep! You just have to take insulin for it.

Will Exercise Help?

Very much. While exercise won’t reverse the symptoms of T1D, it will make your body more sensitive to insulin, which is a good and healthy thing.

Are My Children at Risk for T1D?

There’s no genetic guarantee of T1D, just as there’s no genetic guarantee of red hair.  However, the child of a Type 1 Diabetic is more likely to develop the disease than the child of a non-diabetic.

So the answer to this question is “Yes,” but the odds of your children being diagnosed with T1D remain small.

What is the Honeymoon Phase?

For a while, you’ll retain some pancreatic function. That means your pancreas still works a little bit, and you won’t need as much artificial insulin. This period of time is called “The Honeymoon Phase,” and it can last up to a year.

Should I Hope for a Cure?

There’s no cure coming soon, but there are hopeful things on the horizon. Several research teams are hard at work on promising treatments and technologies: I’ll name three.

ViaCyte has engineered stem cells to become beta cells (insulin secretion cells). Their treatment would put a small, semipermeable capsule in the skin of your upper arm that (a) produces all the insulin you need, (b) protects the beta cells from autoimmune attack, and (c) would need to be replaced every few years.

Semma Therapeutics works with “pluripotent” stem cells, which can replicate indefinitely. That’s an exciting quality, because if their treatment works (it’s way too early to tell), you’d have a self-sustaining population of beta cells!

Sigilon Therapeutics has developed excellent capsule technology. They might have the best shot at keeping your new (artificially implanted) beta cells safe.


I’ve omitted lots of important stuff (talk to your doctor!), but I hope the ground beneath your feet now feels a little more solid. Remember, Type 1 Diabetes is nothing to take lightly, but if you’re up to the challenge, you’ll be okay. Get educated, find good doctors, be honest about how you’re feeling, and plug yourself into a nourishing community.

Don’t let this cramp your style! Your prospects are as bright as they ever were.


Creative Commons photo at top by JDRF

Diabetes Essays

The Weight: Caregiver Fatigue And Diabetes

When your kid's life is on the line, caregiving is a 24 hour job. What do you do when that job wears you down?

Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on November 16, it is one of our favorite pieces from 2017.


It’s 2:14 in the morning and a high-pitched beeping is coming out of an iPhone next to my bed. I groggily stand up, trudge upstairs, and save my son’s life again.

My son Henry has type 1 diabetes. It’s an incurable autoimmune condition that, if managed well, won’t have a significant impact on his quality of life. But managing it well presents its own challenges for my wife and I.

Henry Jensen.

The thing with diabetes is that there are two dangers. If his blood sugar goes high, it’s not an immediate threat. Too much of that will cause his eyes to fail and his organs to shut down, but we catch that kind of thing pretty quickly and he’s very responsive to insulin. But if it goes low– and keeps falling–it can result in him falling into a coma and dying. When he goes low, he typically loses 50% of his brain functionality, meaning that he’s not always capable of treating it himself.

It happens all the time. And his sugar can drop really fast. We’ve been out swimming or hiking and he’s plummeted from the mid-80s to the mid-40s in ten minutes. Once he was at school and he dropped so precipitously that he wasn’t coherent enough to take sugar by mouth. The staff had to give him the Glucagon, an injection of sugar that will rapidly spike his blood glucose back up to safe levels. That’s a big needle, a scary needle, and it goes right into the muscle.

So we have a device called a continuous glucose monitor, a little needle implanted in his arm, attached to a Bluetooth transmitter that broadcasts his blood sugar level to his iPhone, and then into the cloud to our iPhones. It’s a wonder of technology, something that would have been unthinkable a generation ago.

Instead of having to take a needle, prick his finger, and siphon blood into a glucose meter every time we need to look inside his body and find out his sugar, we can now see it whenever we want. He’s also wired up with an insulin pump, a small device in his stomach or back that we replace and move every three days, so when we need to bring his sugar down it’s simply a matter of conveniently pressing a few buttons as opposed to prepping a syringe, measuring a pull of insulin, finding a site and giving him an injection.

Things are tremendously better for him than they were for diabetics 20 years ago. But that doesn’t make them necessarily better for me. The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

Some nights his alarm goes off every two hours, each time asking for more insulin or more glucose to stabilize his sugar one way or another. Some nights his alarm never goes off at all. Even then, I find myself waking up anyways, usually at 2:30 in the morning, and reaching over for his phone in a panic. Did the battery die? Is he OK? He is. He always is. But I still check.

And then there are the nights his alarm goes off, and goes off again, and again, and again. On a particularly bad night I can be up every hour or two to give him a sip from a juice box to raise his sugar, or a unit of insulin to bring it back down. And then I have to get back in bed and try to get back to sleep with the lingering adrenaline from being woken by the alarm still coursing through my system.

It’s exhausting to have Type 1 Diabetes, but it can sometimes be even worse for the parents.

Let’s be clear: it’s not just me doing this. My wife handles an equal share of the responsibilities for his care. Even with two of us, though, it’s a lot. And it’s wearing us down.

Doctors call it “caregiver fatigue.” It’s when you push yourself to the limit every day contending with the needs of your loved one with an illness and it results in problems for your own health.

Common symptoms of caregiver fatigue include irritability, inability to concentrate, appetite issues and vulnerability to sickness. I can only speak for myself, but after a string of rough diabetes days, I can be a miserable person to be around.

After a string of rough diabetes days, I can be a miserable person to be around.

For me, the biggest issue is sleep. There’s plenty of science that shows that cognitive abilities start to decline when you get less than 7 hours of uninterrupted sleep a night. I can only think of a handful of nights I’ve done that in the last four years. I am fully aware that I’m not operating at 100% capacity, and it affects every other part of my life, from my relationship with my wife to my exercise and diet. I don’t have energy to play with my kids, and I start feeling resentful of their very existence. It’s no good for anyone.

Caregiving is a 24 hour job. And I already have a job. You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

It all came to a head earlier this summer, when my wife left for a week on a business trip. Everything fell apart – Henry got hand foot & mouth disease at a party (please don’t bring your kids to parties when they’re sick) and it made his blood sugar extra volatile as it covered his extremities with blisters. I should have dropped his carb intake, but I didn’t have the time or energy to cook so we did one pizza night too many. Every night was awful, and every day was full of too many things to do. I took great care of my kids, but at the same time I was stretched to my limit. And then I broke.

I wound up spending a week in a mental hospital, dealing with issues that went beyond caregiver fatigue but my exhaustion definitely exacerbated. I was put on an antidepressant and met with some doctors to learn new coping mechanisms. And most importantly, I was forced to admit that I can’t keep doing this without help.

And then I came back to my family.

You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

The biggest issue with type 1 diabetes – and really most chronic illnesses – is that you can’t control them. You can only manage them, and that takes constant effort. And my only real job on this planet is making sure that my children grow up as happy and healthy as humanly possible.

The Jensen family.

Every day is a new challenge to navigate, to learn how to take care of myself as well as I take care of my children. But it’s the same challenge that every parent out there is dealing with. I just have a few additional layers of stress on top of it.

There’s no magic bullet for caregiver fatigue, no medication that will make you care just enough and no more. Just like my son has to learn to listen to his blood sugar and feel if he’s low or high, I need to listen to my joints ache and my head buzz and know that I need to rest. And just like I help my son, my family can help me. One of the best ways for me to manage that stress is to put my work down and sit and play LEGOs with him, or read comics. To let myself experience his childhood unencumbered with him.

I’m going to be caring for Henry until he’s 18, and probably longer. What makes it worth it is knowing that he’s also caring for me. Thinking of him, and my wife, and my daughter while I was in the hospital made me realize that I need their strength as much as they need mine, and together we can do things for each other – and the world – that we could never do alone.

Diabetes Profiles

Full-Time Mom, Part-Time Pancreas

Being a caregiver to two kids with Type 1 Diabetes requires a lot of love, math, and sleepless nights. But Julie Seabury says it's all worth it.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.


“Learning how to care for a diabetic is like a part time job,” says Julie Seabury. Except it’s one that starts at dawn.

Everyday, Julie starts the day on alert. As soon as they wake up, her daughter Maddy, 10, and son Jake, 14, check their blood levels and tell her the results. “I want to know what we’re starting at,” Julie explains, equating it with a quick glance at the fuel gauge before you rev up the car.

Julie Seabury

Then comes the math. The kids make their own lunches, writing the estimated carb count for every item they pack. Their breakfast depends on their blood count, but never includes carbohydrates, which might cause their levels to spike. But eggs and bacon are usually on the menu, as well as carefully measured glasses of juice, if their morning blood sugar levels are low.

Next, the drive to school. Maddy and Jake’s teachers are prepped on what to do ‘in case of an emergency’, but Julie still needs to double check that the administration knows the signs of high and low blood sugar, and that the nurses have backup meds on hand in case of emergency. Once she’s confident the kids can get through the day, she drives off to her full-time job, also as a teacher at a nearby school, but even then, she’s always got one eye on an app that connects to Maddy and Jake’s blood monitoring systems so she can check on them throughout the day.

Night is the scariest time.

When you have type 1 diabetes, there’s a phenomenon called “Dead in Bed” syndrome, in which low-blood sugar can result in a person with diabetes slipping into a coma and dying. Julie’s nights are filled with surges of fear that, if she doesn’t check on them regularly, either Maddy or Jake will succumb to the syndrome.

So every night, Julie sets two alarms: one at 1am, then another at 4am. When they go off, she slips into her children’s rooms as quietly as she can, to check their blood levels. Sometimes, when she checks, her kids’ glucose levels will be off the charts, seemingly for no reason. Then, she and her husband are up six or more times per night, bringing her children juice and making sure they’re okay.

The Seabury Kids. Maddy, front, and Jake, right, both have Type 1 Diabetes.

Before June 2014, Julie couldn’t even imagine having to worry about such things. That was the month that Julie’s youngest daughter was diagnosed with Type 1 Diabetes.

“There really is a learning curve [to managing Type 1]…      It’s not a simple math.”

Maddy, then 7 years old, had recently begun losing weight. Normally bright and energetic, she became lethargic and sickly. Already managing celiac, Maddy was more susceptible to other autoimmune diseases, so Julie and her husband took their youngest daughter to the hospital. What followed was a whirlwind 24 hours in intensive care, followed by a three-day crash course in which Julie–a total stranger to the world of diabetes–had to learn all of the (seeming) calculus needed to keep her T1D daughter healthy.

“There really is a learning curve,” Julie remembers. “It’s not a simple math.” Luckily, Maddy was diagnosed in summer, months Julie has off from work. During this time, she perfected her technique: checking blood glucose levels with a finger prick, injecting insulin, and counting carbs to keep Maddy stable.

It was good she had the practice. Six months later, her oldest child, Jake, was also diagnosed. This time, she knew just what to do, but while it was easier in some ways, “it was also harder, because I knew what [type 1] meant,” says Julie. “I knew what it meant for our family.”

A glimpse inside Maddy’s bag reveals lots of diabetes supplies.

Three years later, Julie and her family have adjusted to the drastic lifestyle change that comes with having two of their three children diagnosed with T1D. Now, Maddy and Jake are “pretty darn independent. “ They test their own blood, count their own carbs, change their infusion sets for their insulin pumps and know their bodies well enough to be aware of their needs when they are exercising, eating lunch, or having highs and lows in their blood glucose levels.

With all these struggles, parents that have children with T1D need support. That’s why a significant portion of Julie’s spare time is devoted to reading messages from other Type 1 parents online, through blogs or Facebook groups. Julie doesn’t often post herself, but “just seeing other people putting themselves out there” helps her, she says. “I can read that and know that I’m not alone – other people are out there crying their eyes out too.”

One day, Julie posted on her own Facebook page: “Today, being a pancreas is kicking my butt.” Both Maddy and Jake’s CGM devices broke, expensive pieces of equipment which provide Julie with important mobile alerts about their blood sugar levels. The bad luck highlighted another underemphasized fact about being a caregiver for someone with Type 1 Diabetes: the constant expense. All of this equipment costs money, and even with insurance, it puts sizable financial stress on the family.

“It’s just constant. If I really think about the fact that we will never get a break from this, it becomes disheartening. It’s always there.” The challenge of the Type 1 parent is achieving balance between the constant worries and responsibilities of keeping a child healthy, and not letting Type 1 get in the way of a life well-lived, for everyone affected by it.

The challenge of the Type 1 parent is achieving balance… and not letting Type 1 get in the way of a life well-lived.

Through all this, Julie takes strength from her children.

Last year, for a project interpreting Martin Luther King Jr’s ‘I Have A Dream’ speech, Maddy focused on her dream for a cure of diabetes. “She researched how many people are affected by diabetes, and taught her class about it” Julie remembers. “She explained how finding a cure would change things for her when she is playing sports, or having a sleepover at a friend’s house.”

That’s a dream Julie, too, shares. She can only imagine how her life would change if a cure to Type 1 Diabetes is found: the money it would save, the gray hairs it would prevent, the nightmares it would stave away. But that’s not to say Julie Seabury resents being a human pancreas. Far from it: there’s just nothing she wouldn’t do for her kids.