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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

Chronic Illness Diabetes Disability Features

When Diagnosis Leads To Entrepreneurship

Spina bifida, Parkinson's Disease, and Type-1 Diabetes. For these three entrepreneurs, their conditions were what launched them on the path of business success.

Some give into fear and uncertainty after a medical diagnosis. Others treat it as a call to action, reveling in the resilience, empathy, and creative problem-solving skills they’ll need to develop as they navigate life with a chronic medical condition.

It’s not too different, when you think about it, from the traits entrepreneurs need to develop to survive.

The CEO Who Wanted To Gamify Rehab

Just ask Scott Kim, who’s now CEO and cofounder of NEOFECT USA, a company that creates smart rehab products. Unlike most kids growing up in South Korea, Kim wasn’t allowed to learn Taekwondo. Kim was born with spina bifida, a condition where the spinal cord does not develop or close while in the womb. While other kids took Taekwondo, he spent countless hours in rehab from about the age of six to ten.

Scott Kim’s experience with spina bifida inspired him to create the RAPAEL Smart Glove.

“The biggest problem to me, besides the outdated facilities and tools [available to kids with spina bifida in South Korea], was I found it very boring and I wasn’t sure if I was progressing or not,” he says.

Fortunately, Kim did progress to the point where he was able to start playing sports with his friends at around 12 and 13. He even eventually started playing soccer competitively. But he never forgot the experience of having to sit on the sidelines, and when he went to the University of Virginia, where he earned an MBA, he focused on ways to improve the rehab experience for sports-loving kids like him.

What if they could gamify rehab to quantify progress and actually make it fun? He visited rehab clinics to hone his idea. “To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea,” Kim says. “A lot of things still look very analog. It doesn’t look very exciting. Doesn’t look like it measures the progress.”

To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea.

That’s why, in 2015, Kim’s company launched the RAPAEL Smart Glove for hand rehab. “Once you put it on your hand, it becomes a controller, so you can play games with the glove on at the same time you’re going through the rehab process,” Kim explains. Games include tasks like squeezing an orange, catching a baseball, throwing darts, or pouring wine.

Eighty percent of NEOFECT USA’s customers are stroke victims, according to Kim. “Others are traumatic brain injury or spinal cord injury patients,” he adds. NEOFECT sells its products to clinics including Stanford Healthcare and the Department of Veteran Affairs, as well as direct to consumer. “Our hope is that we can help people get access to the rehab tools at home so that they can get better,” Kim says.

The Woman Who Wanted To Make Type 1 More Fashionable

Carolyn Jager, founder of Sugar Medical

Carolyn Jager, founder of Sugar Medical, a line of fashionable and functional bags for diabetes supplies, also drew business inspiration from her youth. As a style-conscious teen who was diagnosed with type-1 diabetes at age 13, Jager didn’t like carrying around the ugly black medical bags that came with her glucose meter, so she’d make her own bags or have her mom make some for her.

Flash forward a few decades. After leaving a job as a buyer for Macy’s, Jager was looking for a new project. A family friend needed a pancreas transplant due to complications related to diabetes, an incident that served as a wake-up call for Jager. “It scared me quite a bit,” she says.

Jager launched her business in 2009. “I’m not a scientist or anybody who can cure diabetes,” Jager says. “But I could make improvements in how [people with diabetes] carry their glucose supplies and avoid complications that arise from poor glucose control.”

We’re offering the public a better way to carry supplies without people asking ‘what is that?’ This is a line of bags that no one would think are a medical bag.

Sugar Medical bags aren’t just pretty; they’re also practical. Jager points out that a bag with a bright teal stripe or a big purple butterfly is easier to spot in the bottom of your gym bag or across the room.

Plus, the bags include a built-in receptacle for glucose test strips that otherwise wind up everywhere. “There’s a vinyl-lined compartment which you can wipe out and clean,” Jager says. “It can hold up to 200 test strips. It’s not necessarily the diabetic who finds in the best feature; it’s the family members who don’t have to pick up strips all over the house.”

A look at Sugar Medical’s line of fashionable diabetes kits.

In addition to selling to consumers online, the 5-person company now has a licensing agreement with an insulin pump manufacturer, and the bags are included in a care kit provided to people who are recently diagnosed with type-1 diabetes. “We’re offering the public a better way to carry supplies without people asking ‘what is that?’” Jager says. “In the Type 1 and Type 2 diabetes community, there are a lot of individuals who are sensitive to being labeled as “diabetic” and are embarrassed to carry their supplies. This is a line of bags that no one would think are a medical bag.”

The Shoe Maven Facing Parkinson’s In Heels

Meanwhile, Tonya Walker received her diagnosis in adulthood, but like Jager and Kim, she used the experience as an impetus to make an impact on other patients and their families.

Starting around 2006, Tonya Walker noticed that her left arm didn’t swing when she walked, and had also lost dexterity. Two years later, the Florida mother, then 34, was diagnosed with Parkinson’s disease. “My husband and I went to the doctor together, and we didn’t talk about it the whole way home,” she recalls. “Really, we didn’t talk about it for five years. We basically chose to ignore it. I think I was living in denial. I didn’t tell anybody except for my immediate family.”

Walker loved high heels but Parkinson’s messed up her balance, so she could no longer wear them. Then in August 2013, Walker had her first brain surgery and her balance improved to the point that she could dust off her high heels. “We decided to start a fashion and shoe blog and use it as a platform to raise Parkinson’s awareness,” Walker says. “When society thinks of a person living with Parkinson’s, they don’t envision someone in their thirties.”

Tonya Walker, who has Parkinson’s, started the Show Maven to prove that fashion transcends illness.

The Shoe Maven launched in 2014, and has two main audiences, according to Walker. For people who don’t have first-hand experience with Parkinson’s, she says “they see fashion and may not even realize I have Parkinson’s.” Then as they read her bio or dig deeper in the archives, they might learn about her diagnosis and about the disease.

The other audience is people with Parkinson’s, especially with young onset Parkinson’s like Walker. “They can go to my blog see that I’m living a joyful, happy life with the disease,” Walker says.

The blog is mostly a passion project, but it has helped Walker raise money and open doors to other opportunities. For instance, she sold T-shirts called TSM Originals and donated $5 from the sale of each shirt to the Michael J. Fox Foundation for Parkinson’s Research. She also organizes an annual fundraising event called Art of Fashion in collaboration with local fashion boutiques, museums and galleries.

Walker’s online presence as a blogger has led to speaking engagements with pharmaceutical companies and community organizations. She also shared her story during the World Parkinson Congress in 2016 in Portland, Oregon. As Walker works towards higher-profile gigs as a motivational speaker, she says, “I don’t want other people to feel like they have to live in denial or secrecy.”

Chronic Illness Disability Q&As Roundups

Community Roundup: How Often Do You Think About A Cure?

When you have a condition, the prospect of a cure can inspire hope, but that hope can also sometimes get in the way of recovery. So how should you think about it?

For people living with chronic conditions, the prospect of a cure can both inspire and dishearten. After diagnosis, some organize their lives around a search for healing. Others focus on living well with their condition, refusing to be defined by sickness and cautious lest the hope for a cure distract them from the life they have.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: How often do you think about a cure? To what extent does it shape your daily reality? Some responses have been edited for clarity.

Sonya Huber:

Sonya Huber

I do sometimes think about a cure, mostly when I hear about people with rheumatoid arthritis who went into remission. I allow myself to imagine what it might be like to be fully mobile and pain-free again, but then I have to put that out of my mind. Because this is my life, this is my body, and I go forward into each day with joy only if I love and care for the skin I’m in.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Claudia Merandi:

Claudia Merandi

I never thought about my illness, Crohn’s, having a cure. I’ve only known what it is to be “sick.” But I live as a “healthy sick person.”  I never considered myself to be “that” sick. I only knew a hospital bed for 20 years and I still didn’t think I was sick. Maybe that’s why I’m still fighting. If there was a cure, I wouldn’t be who I am today and I love the person I am today. I am Crohn’s. Crohn’s isn’t me. I am everything before I am a person with Crohn’s.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Jed Findley:

Jed Findley

A cure? Preposterous! I never think about a cure. I am solid in the fact that Ankylosing Spondylitis is incurable. They barely have a genuine treatment right now. I think we are far far away from a cure. Thinking about what may be causes a lot of grief. Like dreaming of living comfortably in a huge house when you are barely making a living. A cure is a fairy tale and getting ones hopes up for Prince Charming is only going to lead to a huge letdown. I don’t need this kind of depression in my life. So, I don’t even dream of a cure.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.

Saidee Wynn:

Saidee Wynn

Honestly, I don’t think about a cure that often. It will occasionally burst into the forefront of my mind, but I try to push it right back out. There may never be a cure for my illnesses in my lifetime. If I were to hold onto the belief that a cure is coming, I feel I would end up putting my life on hold.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

Eric Valor: 

Eric Valor

Pretty much every day. I think about it in terms of my own research for a cure and about what I will do to get my life back when cured sufficiently to regain my movement. It’s my single most motivating thought.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

Farrah Kaeser:

Farrah Kaeser

On a personal level I have resigned myself to the fact that there is no cure for the conditions I have (Fibromyalgia, Ehlers Danlos, and more), and that there probably won’t be in my lifetime. In fact, doctors and scientists don’t even fully understand (and some “don’t believe in”) my conditions, so the idea of a cure seems unrealistic. Dwelling on it really doesn’t help me any, as it doesn’t change anything or move me forward in life, rather it exacerbates my depression and brings me down.

But on a professional level, it’s a different story. When I got my first diagnosis (fibromyalgia), the fact that my doctors so nonchalantly told me they didn’t even understand the mechanism behind my pain, that it would just get worse and worse, and there was no cure, good luck, flabbergasted me. So much so that I have spent the last 9 years in school for Natural Medicine. I now am completing my doctorate, in hopes of finding a better understanding of what’s happening on a neurological and cellular level in the body,  as well as possibly developing either natural or integrative options to help manage symptoms. I work every day for a cure for my conditions and others, but am aware that while my work is important and will hopefully be beneficial, likely we will not see notable results in my lifetime.

So, in conclusion, the answer is two-fold. It is both an ever-present dream and goal, but one that I do not place any hope in for myself. I hope I am surprised by a development that can benefit me. That would be life changing! But for me personally, clinging to an unlikely dream does more harm than good. But working towards making things better… that’s the key.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at www.workshark.me

Forester McClatchey:

Forrester McClatchey is a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

I don’t think about a cure very often. Partly this is because my illness (Type 1 Diabetes) has become so manageable that it’s rarely a source of great suffering. Partly it’s because I don’t want to get my hopes up. Now that I think about it, I realize that I actively avoid thinking about a cure. Here’s why. With T1D, discipline is essential to self-care. Your body is a daily science experiment, and that means you have to be a good scientist (rigorous, detached, thorough, empirical). The promise of a cure, however distant, would erode those virtues—especially the discipline—by making them seem less necessary. So I approach cure-talk with a lot of caution and skepticism. I dream about a cure, but I try not to feel entitled to getting one.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amy Nicewicz:

Amy Nicewicz

Living with Crohn’s disease has been one of the biggest battles I have ever faced. With a cure, my entire life would be different. I am used to the pain, sadness, worries, and what feels like loneliness. Every six weeks I arrive at the hospital for my treatment. I stay for a couple hours and wander the halls rolling my IV stand by my side. On the days I lose hope for a cure, I remind myself how I must live life as much as possible right now. I imagine my twelve-year-old self, lying in a hospital bed for an entire week. I was thin, frail, confused, and standing on the cliff of death. These experiences shaped me into who I am today. I aim to live in the moment more. I never forget to remind those I love how much they mean to me. Not knowing when and if a cure will come is how I power through the day. People who share the same chronic illness create their own empowering community together.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1.

Rhiann Johns:

I only really think of a cure when I am in a dark place, or when the frustrations and reality of living with a neurological condition become evident. For example, the times when I run out of ingredients while cooking.  It is times like this when I consider the reality of how these symptoms affect my life and wish I was ‘normal’ so that I could simply shop by myself instead of being so dependent on others just to get out of the house or to go shopping for me. However, in my opinion, it is not particularly productive to allow thoughts of a cure to influence or shape your daily life.  For me, doing so would only set up myself for endless disappointment and would leave me with more negative feelings and resentment toward my neurological condition.

That is why I instead to focus on the present.  By doing so, I can live the best life possible despite the neurological condition I live with and the symptoms that can cause many disruptions in my life. A promise of a cure comes with many different words such as ‘possible,’ ‘chance’ or ‘might.’  Words which are only mere possibilities and no real definites.  I prefer definites, and so I prefer the present rather than to dwell on the future and what it may or may not bring.

I will sign off with one of my favorite quotes: “Yesterday’s history, tomorrow is a mystery, today is gift, which is why we call it the present.”

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

 

Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Diabetes Q&As

The Diabetes Cyborg Hacking Her Own Pancreas

Dana Lewis invented the Open Artificial Pancreas System to make things easier for herself, and millions of others type 1 diabetics around the world.

In one specific way, Dana Lewis is a cyborg. To cope with her Type 1 diabetes, the health researcher wears what she calls an Artificial Pancreas System, or APS, a sort of DIY external organ. Clipped to her hip, it consists of an insulin pump reverse-engineered so as to be able to communicate wirelessly with a small computer and radio stick. Every five minutes, the computer monitors her glucose levels then adjusts the pump accordingly, automating what has always been a human labor. Blood sugar levels can be affected by everything from stress to diet to jet-lag but the APS takes all of this into account with the sober calculating of, well, a computer. For diabetes sufferers, the device is a godsend. Lewis is its inventor.

Today, Lewis is the leader of what she calls the open source APS movement. Hundreds of people, she says, build and use an APS across the globe. Every year she counts more and much of the growth can be attributed to her evangelizing. Extremely active on social media–“a prolific Tweeter”–Lewis is constantly singing the praises of her APS experience. Her Twitter account is chock full of pictures and anecdotes; Lewis meeting up with other APS users; Lewis getting through airport security scot-free with her APS attached (“#havepancreaswilltravel”).

Lewis is, undoubtedly, totally committed to the DIY cause. With a grant from the Robert Wood Johnson Foundation, she works from her home in Seattle communicating with other APS users, all of them trying to figure out how to perfect and proliferate the device. There are around 1.25 million Americans affected by Type 1 diabetes but Lewis has nothing less than the world’s whole population of sufferers in her sights. With such a bold vision, we reached out to hear more about her plans.

Dana Lewis standing in a field of tulips.

First off, why is the APS such a game changer?

In type 1 diabetes, what a person has to do is constantly be aware of not only their blood sugar but a lot of other factors about what they’re eating and the timing of their insulin [intake]. It’s a lot to keep track of. You have to do it 24/7, 365 days a year for the rest of your life after you’re diagnosed. What’s great about the artificial pancreas system is instead of having a human be burdened with staying on top of every single number and projection–that’s what a computer is perfect for. It can do the math every five minutes. It doesn’t get tired or emotional or worn out. It’s able to crunch the numbers and do the decision making automatically, no matter what the human is doing. It removes a lot of the cognitive burden and often achieves better outcomes than what people can do by themselves.

What is looping?

Looping is what we use to describe the act of using the system. It’s technically known as a hybrid closed loop but we call it an artificial pancreas. Looping is the act of closing the loop between the pump and the CGM.

How did your own experience with diabetes lead to this innovation?

I’ve had type 1 diabetes since my freshman year of high school, almost 15 years now. The APS actually started with one particular problem that I wanted to solve around making my continuous glucose monitor (CGM) louder. That’s the device that measures your blood sugar every five minutes. It’s supposed to alarm you when your blood sugar is too high or too low. But I would sleep through the alarm. It’s actually very dangerous. My frustration was around wanting to get the data off of that particular alarm in order to make a louder alarm using my phone. Once we were able to achieve that, we were able to build algorithms that led us into building the artificial pancreas. It’s funny because that wasn’t the original goal of the project. The goal was to wake me up. But now I have a device that lets me sleep and automatically takes care of everything for me.

A look at an artificial pancreas system.

Who is ‘we’?

This is an open source community project with a lot of people. Primarily it was myself and my now husband, Scott, who was my co-design and development partner throughout this entire project. When we first met in 2013 his first question about my insulin pump was, ‘Why doesn’t it talk to your CGM?’ I said, ‘They’re different manufacturers–of course they won’t talk to each other.’ But it wasn’t until six months later that we found somebody through Twitter who had solved the problem of getting data off of CGM that then allowed Scott and I to build all of these subsequent systems. Social media really brings people with ideas together to be able to collaborate on tools like this. This might not have happened had we not had social media to connect people. We did our first louder alarm system in 2013. A year later, December 2014, we had closed the loop and built the artificial pancreas. Today, over 500 people worldwide use an APS.

Why do you consider this a movement?

It’s definitely a movement. We use the hashtag #WeAreNotWaiting. People say, ‘Why do you do this?’ It’s the fact that we are going to wait years for a commercial solution that may or may not fit our needs. Why wait when we have off the shelf consumer grade hardware that actually allows us to do this?

Are there commercials products available now?

I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough.

There is one commercial solution that’s now available in the US. It’s very very expensive. But it’s important to realize that this is a global issue. So I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough. We really need technology that’s available in every country. There’s a big role for the diabetes community to play in terms of educating people. If you can’t afford or access a commercial option because you can’t get insurance approval or it’s not available in your country that doesn’t mean that you have to suffer in the meantime. You do have a choice to go and try something DIY.

How are you spreading the word about this?

We have a website that links to the open source codenames and documentation. People also share frequently across social media. They blog, tweet, give talks, post videos, talk about it on Facebook. It’s really word of mouth that connects the community with one another. That’s important because it’s DIY. People have to build it themselves. There’s nobody to give them the thing because we’re not a company. We can’t do that legally. People often run into questions when they’re building it. But that’s the great thing of having a whole community because you have dozens if not hundreds of people who can help answer questions about what’s happened–if this happens on this type of computer or I have a question on how the algorithm works. So it’s a really 100% open-source effort in terms of not just the code but also the kind of help people give.

Just because an artificial pancreas is homemade doesn’t mean it can’t come with cute accessories.

Is an APS difficult to make?

There’s a perception that it is. But we actually have dozens of people who come in with no technical experience and they’re able to get it up and running in about an hour. It’s not impossible but the big barrier is people being willing to try. What’s surprisingly funny is there’s some people who come in with a lot of technical expertise and they start getting bogged down in the weeds and try to fine tune it after building it, without building it successfully first. So they’re slower to build the system than people with no technical background.

The big barrier is people being willing to try.

Once people get them going, how does the APS impact people’s lives?

For me it’s peace of mind. Others, like parents, who have a constant worry about their children and wake up several times a night to take care of their children talk about how great it is being able to sleep again. For other people it’s about having to do less work for diabetes. The amount of work it takes is so much less with this technology. Also the blood sugar itself. It’s easier to reach your goal of blood sugar and stay there with an APS.

What are you working on right now?

We are continuing to evolve both the algorithm and the hardware that we’re using. I’ve been looping now for over three years. The hardware has changed. Our biggest challenge is time. It’s a 100% volunteer project. When something comes up it’s based on us carving out the time to do it and being self-motivated. No one’s paying us. We do get a surprising amount done but more hands makes for lighter work. It’s always nice to have more volunteers join the community.

What are the demographics of the community?

We have people all over the world. Brazil, UK, Spain, Russia, Bulgaria, China, Australia. People on five continents looping. The language barrier might be bigger than the technical barrier. But Google Translate has made a big difference.

What are your long term goals?

One of the challenges right now in the US is there’s only one kind of pump which is loopable. These are old pumps which have technically been recalled because of a quote unquote security flaw. Somebody found the ability to remote-control it. The FDA told the company to recall it. But that same kind of flaw is what actually allowed them to remotely communicate with our computers, which is actually ideal. So those of us who are looping have decided that the benefits of looping outweigh the minimal risks of somebody trying to do something malicious.

These pumps are not brand new. You can’t buy them in warranty. You run the risk of your pump breaking and having to buy another one on a secondhand market. There are other pumps available from manufacturers elsewhere around the world that have bluetooth built in, modern pumps without security flaws. We’re working with pump manufacturers to have them bring a modern pump to market in the US and elsewhere around the world where we don’t have to rely on the security flaw and can actually use an in-warranty modern pump. We’re trying to facilitate the use of open protocols, so instead of having to hack the communication and do a lot of reverse engineering work we’d much rather have a clearly documented communication protocol that the user can safely and securely use. A big push of our community’s work is pushing those companies to bring these to market.  We shouldn’t have to reverse engineer medical devices.

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.

Genetic & Congenital Diseases Health & Fitness

Fighting Cystic Fibrosis With A Rumble And A Roar

When his condition was at its worst, Paul Underhill designed his own nourishment drink to prevent himself from starving. Now, he sells his drink across Canada to help others.

It’s Good Friday 2011, and Paul Underhill, 41, is being wheeled into surgery at Toronto General Hospital. Instead of being fearful—a typical response to a double lung transplant—Underhill is cheerful. He’s singing.

“I’m on my way, I don’t know where I’m going, I’m on my way!”

Smiling from behind his rectangular, black-rimmed glasses, he sings me the Paul Simon refrain he performed for his nurses six years ago. Sandra Underhill, his wife of 19 years, joins in the singing, but she wasn’t sure what to make of her husband’s playfulness pre-transplant. She was still in shock from it all—numb from months of cleaning blood her husband coughed up, sometimes a cup at a time, and traumatized by all the ambulance rides, not knowing whether he would survive the wait for new lungs.

Born in Victoria, British Columbia, Canada, Paul Underhill was diagnosed at six months of age with cystic fibrosis (CF), a genetic disease that affects the digestive system and the lungs. In the 1960s, a CF patient was lucky to survive to age 10. Today, many still succumb before their 30th birthdays—fluid fills the lungs and hardens, gradually shrinking lung capacity until there is none at all.

Most people with Underhill’s type of CF don’t live to adulthood. The lungs that saved him arrived in the nick of time, the blessed news delivered by a nurse named Grace while Sandra’s father prayed for a miracle at the church across the road from the hospital.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song. That’s Underhill—fearless, and a fighter.

It takes a special kind of person to face a seven-hour transplant surgery with a smile and a song.

“The question that is inside of me is ‘why not?’” he says. “What I’ve learned about myself is that I’m powered by possibility and passion for things that I love… I don’t let fear interfere with what could be.”

Growing up, Underhill performed his lung-clearing exercises twice a day, then participated in his favorite activities—running, soccer, and cycling. At age 15, he competed in the British Columbia Summer Games for cycling. At the University of Victoria, he met his wife and graduated with a bachelor of arts and a bachelor of laws.

“Paul always had a cough, ever since I’ve known him,” Sandra says, referring to the characteristic feature of a person with CF. “When you find a partner and you fall in love, you don’t think about things getting worse. I never thought about [cystic fibrosis being fatal].”

By his early 30s, Underhill’s health was deteriorating rapidly. He was forced to leave a job he loved with the provincial government, but he stayed active, even kite surfing as long as he could. (He maintains it’s the best lung-clearing exercise around.)

Paul Underhill designed his own drink, Rumble, to gain weight back after cystic fibrosis began shutting down his lungs.

To fill the void, he devoted himself to a new passion: keeping himself well nourished, which would aid his recovery come transplant day.

“I realized I couldn’t rely on my doctors, no matter how great they were, to keep apprised of the latest research,” he says. “You have to look at what the science is right now.”

Underhill poured through medical journals, researching new treatments for CF and lung health. Sandra helped, too, studying nutrition and the link between diet and disease.

“It’s not in Paul’s personality to sit back and wait for things to unfold,” Sandra says. “When he wants something, he goes full steam ahead—and he wanted to stay as healthy as possible.”

Combining their research, husband and wife noted a high correlation between inflammation and many degenerative conditions. Add to that evidence that CF patients with good nutrition have better lung function, and Underhill set out to concoct a nutritious super shake that his body could thrive on.

“I was looking for a beverage of the highest quality that was easy to digest. I looked everywhere and couldn’t find (what I needed),” says Underhill, who is diabetic in addition to having difficulty absorbing nutrients, because of his CF.

The recipe for what would eventually become the drink Rumble took six months to develop in the Underhills’ kitchen. The shake had to be gluten-, lactose-, and soy-free, low in sugar, and free of genetically modified organisms.

“Most important of all, it had to taste great. That’s what took so long in the kitchen, perfecting the taste,” says Underhill.

Rumble—named for the sound the body makes to declare its need for nourishment—comes in three flavours, Dutch cocoa, vanilla maple, and coffee bean, all naturally sweetened with organic maple syrup, organic agave nectar, and vanilla bean. Using organic oils as its base, the drink is light and fluid, not chalky, and has no aftertaste.

Once Underhill was satisfied with the shake, he realized he had a product he could bring to market. In 2008, he launched Rumble with three partners.

Throughout the process of creating the business, Underhill’s CF worsened. At one point, he needed two oxygen tanks to breathe. He couldn’t even brush his teeth without help. As he waited for a life-saving double-lung transplant, he relied on his shake for nutrients to keep his body as healthy as possible.

“The biggest risk pre-transplant is that you get so skinny you’re not going to do well afterward,” he says, noting that three years post-transplant, he was “two pounds heavier than the day I got transplanted, because Sandra made my shake, the essence of Rumble, every day.”

Underhill was living proof the drink lived up to its promise to be a nutritious, protein-rich super shake.

Rumble’s biggest challenge was finding a production partner who could work with its delicate ingredients like organic flax oil, which is rich in omega-3s and believed to reduce inflammation. The team persevered, determined the oil would remain an ingredient alongside pomegranate, red beet juice, organic spinach, kale, and Rumble’s signature protein blend.

“We searched for months until we found a partner who could work with organic flax seed oil,” says Underhill, noting the beverage is made in a secret facility in the Unites States.

Today, Underhill sells Rumble in Canada as a nourishing drink at over 3,000 grocery stores.

Rumble is also the first drink in Canada to be labeled a “nourishing drink” by the Canadian Food Inspection Agency. The category was created in 2012 just for Rumble, which didn’t qualify as a meal replacement because its ratio of omega-6s to omega-3s didn’t match CFIA guidelines. To be a meal replacement, a drink needs to contain a 4:1 ratio, but the Rumble team follows new research that shows the quantity of omega-3s should be double that of omega-6s for ultimate health benefits—hence the importance of the flax seed oil.

Branded aluminum bottles highlight the protein content – 20 grams – and the drink’s promise to “feed the good,” with its more than 3000 mgs of omega-3s, eight grams of fibre, 400 mgs of calcium, and natural fruits and vegetables.

In Canada, Rumble is available in more than 3,000 grocery stores and online on Amazon.ca. The company did a test launch of Rumble in the U.S. in 2015 and 2016 to great success; now, the Rumble team is working with a new production partner to prepare to re-launch online sales in the U.S. in 2018.

“Rumble didn’t exist when I was waiting for transplant, but what did exist was Sandra,” Underhill says. “She made my shake—the essence of Rumble—daily to keep me alive.”

“A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another.”

With new lungs and a new lease on life, Underhill forged ahead after his surgery. A year post-transplant, he won five gold medals in the Canadian Transplant Games. Two years post-transplant, he biked 750 miles for a fundraiser for Cystic Fibrosis Canada and helped raise hundreds of thousands of dollars for CF research.

Rumble has brought Underhill full circle: he developed the drink to keep himself alive, and now, the success of the business has become the perfect platform for him to advocate for both CF and organ donation to help prolong the lives of others.

Meanwhile, he continues to face health challenges. The anti-rejection medication he takes is harsh on his kidneys, which have been causing him problems. “A lung transplant isn’t a cure. I’ve exchanged one set of difficulties for another,” he says good-naturedly.

But like every other challenge Underhill has encountered in his 47 years, he faces those to come with a positive mindset. “When I meet a challenge, when I hear I can’t do something, I think ‘Yes, I can.’ If you want to see me do something, just tell me I can’t.”

Essays

What Rap Taught Me About Diabetes

Living with Type 1 Diabetes isn't glamorous, but its made an indelible impression on my music.

No seizures, No cottonmouth. When the beat begins and the stage feels unsteady beneath my feet, this is my mantra. Though it is not an inspiring mantra, it keeps me vigilant. I have Type 1 Diabetes, and I don’t need inspiration. What I need is focus.

Writing, recording, and performing songs under the moniker Q Curius (named after a very unpleasant Roman senator) with my friend and producer Joel Calvert, I have entered a new ecosystem of diabetic fear. Recently we had our first show. I learned that performing original material becomes much scarier than covering other people’s songs.

Singing or playing an instrument in front of other people cultivates a unique terror. That is true for almost everybody. This fear, however, is usually disproportionate to the actual danger involved. You could fall off the stage, I guess, or muck up your songs and become an object of pity or scorn for an evening, but generally speaking there isn’t very much to rationally fear when you perform music.

Type 1 Diabetes gives you real reasons to be afraid. When you perform, stress surges, and this surge can tamper with blood-glucose levels in dramatic ways. Depending on your personal physiology, adrenaline can cause your sugar levels to skyrocket (causing dehydration, cottonmouth, nausea, and general ickiness), or to plummet (causing, in extreme cases, hypoglycemic seizures).

These extreme results are unlikely, but they do add another layer of tension to my mind, which already has a lot to handle. The thought of unstable bloodsugars damages the performance more than the actual dangers threatening it. It’s a strange place to be, this ecosystem of fears, and a difficult place in which to find sense or meaning.

Diabetes is not a visible disability. Unless you tell the audience you’re performing with Type 1, nobody will know or care.

Diabetes is not a visible disability. Unless you tell the audience you’re performing with Type 1, nobody will know or care. Compare this to the artist Gaelynn Lea (whose song, “Someday We’ll Linger in the Sun,” is lovely), who suffers from brittle bone disease (Osteogenesis imperfecta) and must visibly grapple with her violin to play it. Her music is good enough to make this struggle an afterthought, but still, watching her prevail over her disability adds poignancy to each performance.

Compared to Gaelynn Lea, diabetic performers have little to complain about. Our disease will not prevent us from holding a guitar or dancing around a stage. The barriers that diabetes erects between the performer and the performance are subtle, psychological, nagging. There’s nothing poignant about that, nothing to inspire a viewer. So what does it mean to be a musician with Type 1 Diabetes, if anything?

Q Curius, getting over his stage fright in front of some friends.

When setting out to write this essay, I wondered if other diabetic musicians could offer some insight. A handful of famous musicians are Type I Diabetics, but when their disease comes up in interviews, they fail to reach the surface of the issue, much less scratch it. Their speech is dominated by platitudes about “staying positive,” “not letting the disease control your life,” and “not letting diabetes get you down.” All of which is vaguely helpful, in the sense that tissue paper can be helpful when bandaging a wound.

It’s not their fault. The problems of diabetic life tend to be bland and tedious, so it follows that one’s responses to the disease would be bland and tedious.

In any event, my quest to garner insight from famous diabetics failed. I turned instead to my experience as a performer, limited as it is, in my search for meaning. It occurred to me that thinking about diabetes as a performance might become helpful.

It occurred to me that thinking about diabetes as a performance might become helpful.

I recalled that during performances, there sometimes comes a moment when the fear (of forgetting lyrics, stepping on the mic cord, and so on) recedes, and the performer can mentally step outside himself and begin to observe: Look over there; a guy is doing a dance move that I want to try later when nobody is watching. That girl seems to know the lyrics better than I do; why isn’t she performing? That child is very small. Who brought him? Should I avoid saying “Fuck” and all of its permutations? Too late.

These moments of detachment come and go very quickly, and I would not call them “a zone.” When you float into them, your consciousness splits between performing and being aware of performing, which can become distracting. Part of your brain performs, and the other part runs commentary on the performance.

In the mind of a diabetic, there is nothing but commentary. Doubt, counter-doubt, boredom, detachment, anxiety; all of these things get in the way of the “performance” of taking care of one’s disease.

Doubt, counter-doubt, boredom, detachment, anxiety… these things get in the way of the “performance” of taking care of one’s disease.

In both music and diabetes, part of me wishes for a Big Moment; a moment of reckoning that brings my life clarity, meaning, or some species of catharsis. In music, the Big Moment never comes because the constant practice and anxiety leading up to a performance makes the actual performance feel like a small moment. You practice, you feel afraid, and then, very soon, it’s over.

With diabetes, the Big Moment can only be dangerous (barring a cure), and there is nothing but practice. The rehearsals–pricking fingers, injecting insulin, fiddling with one’s insulin pump–never end because you’re practicing for your survival. Your cells become trillions of stages on which you perform. If you perform poorly, your biological audience will throw sugar molecules on stage in disgust.

It’s useless to wish for a Big Moment. In order to be good at something, you must love the work of it. To be good at basketball, you must practice free throws and unglamorous footwork, and like it. To be a good writer, you must love the work of bloodying your hands on recalcitrant sentences. This axiom is much easier to recite than to practice. But if it’s true, then in order to be a good diabetic, you must love the work of taking care of yourself. But how can this be so?

In the case of music or basketball or writing, the unpleasantness of the work chisels something good out of the raw material of your experience. This external good–a song, a performance, a pretty jump shot, a poem, whatever–rewards work in proportion to the care and vigor of the worker. In the case of diabetes, all that chiseling serves only to keep something very bad at bay. That Very Bad Something is the threat of accelerated bodily rot, which never stops coming at you.

You enter this fight with the knowledge that you are going to eventually lose.

You enter this fight with the knowledge that you are going to eventually lose. You know you’re going to die. This foreknowledge of defeat can make the difference between vigorous and lazy self-care seem trivial. Why bother practicing well when the game has been rigged against you?

But health isn’t trivial. The famous musicians and their cliche army are right: you can’t let the disease rule you. You won’t win the war, but that doesn’t mean you shouldn’t fight. Fear and anxiety do not absolve you of the responsibility of taking good care of yourself, just as fear and anxiety do not necessarily prevent you from playing your songs with enthusiasm.

It may not be possible to “love” the performance of being diabetic, but it’s possible to stay motivated, pay attention, and convince yourself that health matters. With diabetes, your rehearsal is also your performance, and the quality of your performance depends on you caring about your health and continuing to care.

During a recent Q Curius show, a little kid kept darting through the thicket of knees at the front of the crowd to join me onstage. He wanted high-fives. I was afraid of forgetting the lyrics, botching the high-fives and throwing myself off rhythm, or worse, stepping on the kid. I got paranoid about everything, and began to think the words seizure and cottonmouth again.

The kid waved his hand around while I sang; I paced around and avoided him. He followed me. I finally relented and high-fived him. After that, I was having fun.

It may not be possible to “love” the performance of being diabetic, but it’s possible to stay motivated, pay attention, and convince yourself that health matters.

Type 1 Diabetes is a little kid who always wants a high five. I’m sure many chronic illnesses are similar. Such a kid can be annoying, distracting, or even fear-provoking, but no matter what you think of him, he will keep demanding a high five, and go on demanding it as long as you live.

You won’t shake him, but you can control the way you think about his presence.

I do not think of myself as a diabetic “patient,” or one who “suffers” from diabetes. The disease is a scientific label given to a fact about my body, a defect that will go on being defective whether or not I wrap around it the cloying language of suffering or the numbing language of empirical science.

In both cases, the description has very little to do with the experience of being diabetic. Neither self-pity nor scientific detachment will make the body get better. Still, one’s posture towards the disease matters, just as one’s posture onstage matters. The crowd–whether comprised of cells or human beings–will be able to tell if you give a shit about your performance.

Music has taught me to take health seriously, but also to relax instead of counting my fears. The kid shadows me with his hand out, and he isn’t going anywhere. I’ve learned to dap him up.

Diabetes Health & Fitness

Fighting Type 1 With Curiosity and a Pug

Amanda Oberski's insatiable curiosity about the limits of diabetes is what propelled her on a 4,200 mile bike ride across the U.S.

Amanda Oberski has a really cute pug named Apollo. He’s the kind of calm dog that reflects well on his owner, cuddling up to everyone who needs it. Amanda holds Apollo in her arms a lot, where he calmly sits observing the world from the comfort of her bosom. She lets him off the leash but he doesn’t stray far. He walks around, sniffing trees, bigger dogs, and dark spots on the sidewalk. He’s easy going and curious, just like his owner.

Apollo hasn’t seen Amanda for ten weeks. The 4,200 mile bike ride that Amanda just completed isn’t exactly the sort of thing you can take a pug on. But Apollo was waiting for her at the finish line.

When Amanda saw Beyond Type 1’s open call for cyclists with Type 1 diabetes to bike across the country, her immediate reaction was anger.  “I really thought there was no way someone with Type 1, let alone a team of people, could bike across the country.” She thought it was crazy and dangerous.

Then she had a change of heart. “I sat on those thoughts for a few days and let them swirl around inside of me,” she says. “If my initial reactions were fear and anger, and I think I’m a very adventurous and bold person, that was a big flag for me..  And I realized some were my own limiting thoughts and that if this was going to happen, if a team was going to do it, I needed to be part of that team.”

 

Amanda and her pug, Apollo. Photo: Whitney Freedman

There are a fair few mountains in between New York and San Francisco, the path that the Bike Beyond team took on their mission to raise awareness for Type 1 diabetes. With no cycling experience, Amanda was nervous about those mountains; she imagined accidentally losing control of her bike and plummeting off the side of one. So she started training, using San Francisco’s hills as proxy. (In the end, “biking up mountains is not that fun,” she says. “But biking down them is great–and yes, a little scary.”)

Amanda grew up far from any mountains in Sterling Heights, a suburb of Detroit. She was diagnosed with Type 1 when she was 15. Before she was diagnosed, she’d been sick for months, but being an active teenager–she danced three to four hours a day as a member of her high school dance team–had mostly hidden her telltale symptoms.

What finally gave it away was the peeing. Amanda got up one too many times in the middle of the night, and her mother got worried. They went to the doctor, but both Oberskis thought it was just a bladder infection. “I was there for like thirty seconds. I peed in a cup, they looked at it, and sent me to the hospital,” she remembers. Her blood sugar levels were dangerously high.

The diagnosis was a relief. “I’ve always been very realistic and very positive. I was just happy that we knew what it was, and that there were next steps to take care of it.” She was sick of the extreme sleepiness, hunger, and thirst that untreated Type 1 diabetes can cause… not to mention the constant calling of nature.

Amanda Oberski’s positivity and curiosity about Type 1 is what propelled her across the country.

Amanda embraced her diagnosis. Some things were difficult, like going out to eat when she wasn’t sure where the carbs were hiding in any given dish. Also, as a high school girl, she liked cute little bags, which is right out with Type 1, given the number of supplies you need to carry with you. For the most part though, Amanda dodged the Type 1 burnout which is common after diagnosis, once the relentless attention required to manage the diseases starts waring people out.

Her positivity has been an asset in managing her diabetes. “When you have Type 1,” she says, “You have to roll with the punches because you can plan your day a certain way and then it will totally go up in flames and you have to be able to say ‘Well, ok!’ and restrategize. Because it’s literally your life on the line.” She says that being curious about diabetes helps her with her adaptability. “I love to figure stuff out. My diabetes was actually interesting to me.”

These days, Amanda tries to instill her curiosity in others. After finishing a Teach for America program in Washington DC, she stayed with the organization working with schools in the district on bettering their science curricula. Four years ago, Amanda and Apollo moved to San Francisco together where Amanda began working to help build a K-12 Engineering and Design school called Bright Works.

“A lot of the way that K-12 is run suppresses curiosity,” she says. “We just give kids facts instead of them exploring on their own volition. But learning is not black and white. I think curiosity is the strongest and best ability that we have as humans and that is what we should be developing and propelling forward.”

Curiosity about the limits of her diabetes is what propelled her across the country on a 4,200 bike ride. So maybe Amanda’s got a point. Apollo certainly thinks so.