DiaStories: September Spotlight On Bella

Calling the Shots -

1. What are some ways that you have responded to the hard times when dealing with diabetes?

"Well I have learned to always try and stay positive. Of course, that's not always going to be the case and there's nothing wrong with that either. I've learned that diabetes is a roller coaster of emotions and that it will always get better. Talking to others about my diabetes and struggles is really beneficial. My mom is definitely my number one supporter and always there to listen, give advice, and always there with a hug. "

2. How have you become stronger because of diabetes?

"I definitely have to do things now, that four years ago I never even had to think about. It takes a lot of strength having to give yourself injections, and well you know, look like a pin cushion! I was hard to feel confident walking around with insulin pump tubes sticking out, a CGM plastered to my arm, a

juice box in my hand, but i've grown from that and become more embracive about my diabetes! I've learned over these four years that you can't let your diabetes control you. You control your diabetes."

3. What have you learned about yourself through dealing with diabetes?

"I've noticed that i'm better at math from all the carb counting!! No, all jokes aside i've learned that i'm stronger from my diagnosis."

4. Is there a story that comes to mind when you think about how you are taking control of diabetes?

"For me it was when I switched from a wired pump to a wireless pump. There we so many benefits from a wireless pump for me and I felt much more freedom from diabetes. For me, it was a struggle doing my pump injection on my own. Every three days my mom would do it for me because I would get so upset and nervous and I dreaded it. I was grateful to have my mom to help me! Once I got my new wireless pump I took control and I was able to do it all on my own and that made me feel

really good about diabetes. I felt that I finally had a positive relationship with my diagnosis."

5. What would you tell your newly-diagnosed self now?

"It's honestly hard for me to figure out what to say. I’m still taking it one day at a time. There are still days I’m struggling myself. But I think I would tell my newly diagnosed self that everything is going to be okay. Take a deep breath, and relax. Take it one day at a time. I would tell her that there are so many things to be grateful for within this scary time. There’s no such thing as a ‘perfect diabetic’ either. All that matters is that you are doing your best. Try not to be so hard on yourself. Everything will be okay."

6. What would you tell others who are struggling with diabetes?

"Having a good support system was key for me. Not only family and friends, but also other fellow type one diabetics. Having others to talk to really helps! Having diabetes is hard, but you can do it. Having diabetes has given me a strength that I never knew I had, and it will give those struggling

strength as well. We are type one warriors, we can do anything!"

7. Are there any tips, tricks, and/or recommendations that you would like to share with us when it comes to diabetes?

"Have a good, strong medical tape! The amount of times my pumps and CGMS have fallen off, I couldn’t count!"

8. Favorite food? Favorite low blood sugar snack? Favorite diabetes accessory/gadget?

"I love all things Mexican! Give me those tacos and insulin! My favorite low snack is definitely apple juice! My favorite gadget is my pump. Switching to an insulin pump was the best decision I’ve ever made. It gave me a sense of freedom from diabetes! I love it, and anyone thinking of making the switch, do it!"

A huge thank you to Bella for sharing her story with us throughout the month of September! She is an inspiration to all and we admire her strength and courage as she navigates life with type one diabetes.

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DiaStories: September Spotlight On Bella

The Lowdown -

By Gretchen Boger-O’Bryan

After the prologue that is urgent medical care, diagnosis and a crash course in Type 1 in order to leave the hospital, Bella’s first chapter in her T1D journey began. Armed with myriad medical protocols and an endocrinology team a phone call away, she and her family set to getting back to life as they knew it. Or so they thought.

Despite her personal supports -- which Bella readily notes are ample -- it turns out the transition to her old life was, well, impossible. Ask any T1D and chances are they’d agree; there’s a clear reset, like a biblical Before Diabetes reference point, that requires recalibration to a new normal in the old space.

Explains Bella, “Everything had changed so fast I didn’t have time to process it. I was handed a syringe of insulin and a load of information, and was expected to give myself that shot. Realizing that my life was going to be different from what it was before was difficult.” She adds, “I would look back at pictures and recall memories of when I didn’t have diabetes, and I longed for that life. For me, just accepting the fact I had diabetes was a thing.”

Although nearly four years ago, Bella still recalls the outing with friends shortly after diagnosis that had her suddenly donning a Type 1 advocacy hat she hadn’t realized she’d need or, perhaps, even had. “I was with a group of friends and we passed an ice cream shop. Someone said we should stop and get some. Another person said, ‘Shhh, Bella can’t have sugar.’ ”

While the sentiment may have come from a place of friendship, it provided Bella no comfort. “It made me really upset because I’d never had any issues with the stereotypical thought that I can’t have sugar. It made me angry that most people assumed I couldn’t have sugar, even though I can! I had to constantly inform others that Type 1 diabetes and Type 2 diabetes are different.” As for wearing that advocacy hat? She admits, “I still have to do that today.”

Bella wears a CGM and insulin pump, both among today’s technology to help those with the autoimmune disease manage the ups and downs each day, always looking to hone in on best practices and consistent blood sugars. Indeed, the science behind treating T1D has come a long way -- the first insulin pump was the size of a large backpack and some models even required a screwdriver to adjust dosages -- and today, it’s common practice for folks to see their blood sugar numbers by glancing at their phone or smart watch, and even their loved ones can track the numbers on their phone. Still, for all the advances in science and disciplined calculations, there remains a good deal of ambiguity in playing the role of pancreas.

“There are many, many things I’m constantly thinking about or struggling with. Regulating blood sugars is one of them, and a lot of different things affect that. One day it’s perfect, and the following day it’s a roller coaster of numbers. It’s never a perfect science. It’s an art. A trial and error.”

Bella also points out that all that technology brings with it a lack of privacy. “Another challenge is being open about my diabetes. I don’t like to show my pump sites, or CGM, and I don’t like having to treat a low blood sugar in public. I’ve definitely gotten better, but it’s still a real struggle.”

That day-in-day-out management -- even in the comfort of home, out of public view -- can feel like drudgery. “Sometimes,” says Bella, “I dread having to put on new pump sites or give myself an injection. It’s tiring to deal with.”

Despite all the challenges, Bella must forge ahead. But how? The answer comes easily: “I have so many supportive family and friends that have stuck by my side, and I’ve had the privilege to work closely with Kate Hall and her wonderful foundation, DiaStrong. Being able to meet others who deal with the same things I deal with, having them understand and get what I’m talking about? It’s so refreshing!”

And for the toughest days when feeling alone seems like the only feeling, remembering one friend’s sentiment quickly sets Bella straight: “Friends are like stars. Even though I may not always be able to see them, they are always there.”

Stay tuned for next week’s installment of Bella’s DiaStory, “Damage Control.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.

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DiaStories: September Spotlight On Bella

High & Dry -

By Gretchen Boger-O’Bryan

For Bella, the weeks leading to her diagnosis were a mix of symptoms, each seemingly separate from the other. Among the most common? Insatiable thirst and countless trips to the bathroom.

Although both are often a first clue, the then-13-year-old of South Portland, Maine didn’t share with her parents all she was experiencing at the time. To be fair, many newly diagnosed diabetics and their families admit they were so focused on individual and seemingly random symptoms, many of which could be easily attributed to other causes or were just mere annoyances at first – thirst, for example – that the bigger picture was too far out of view.

For example, Bella’s stomach troubles – which included acid reflux and pain when she ate – had been attributed to school stressors likely causing anxiety. Given the difficulty eating the way she once had, weight loss wasn’t as glaring a red flag as one might think. Yet, over the course of a couple months, Bella’s thirst had remained, her stomach was still off and she was no longer feeling like herself. One day, as dehydration and fatigue took hold, a weakened Bella took a tumble down the stairs. For mom and dad, enough was enough. It was time to rely on the medical prowess of that ol’ parental gut instinct and call Bella’s doctor.

Good thing, says Bella. “The day my mom called, I slipped into a diabetic coma on the way to my appointment. Fortunately, my pediatrician recognized what was going on: I was in DKA (diabetic ketoacidosis).”

While piecing together seemingly random symptoms – thirst, stomach upset, feeling tired – would be impossible for those who’ve never heard of T1D, turns out that connecting the autoimmune-disease dots can be equally deceptive for those in the know. Case in point – not only does Bella’s uncle have Type 1 diabetes, he was living with her family at the time!

En route to Maine Medical Center’s Barbara Bush Children’s Hospital by ambulance, an

unconscious Bella would begin experiencing brain swelling and seizures. Once admitted into the medical center’s intensive care unit and seen by medical personnel, Bella’s parents were told what no one ever wants to hear about a loved one: Their daughter likely wouldn’t make it.

Today, nearly four years later, Bella can describe those moments – having defied the medical experts’ grim prognosis and waking from the coma to a nurse telling her she was diabetic – as if they were yesterday.

“I had no clue what was going on or why I was in the hospital. I was pretty out of it and

confused. The brain swelling made me very aggressive and irritable and I said some silly things. I told a nurse she was pretty, and even told a doctor I hated them!”

As for her first few days in the ICU, it was all needles and IVs. Bella recalls the doctors and nurses as “flying in and out of the room, pumping me with insulin and water. Everyone was very kind and loving toward me and my family, which was very helpful.”

Several days later Bella stepped down from the ICU into the children’s wing, and soon was giving herself insulin injections. All the while, her parents were being given guidance on their newest parental responsibility: helping Bella do the work for her pancreas.

Once released from the hospital and back in the comfort of her own home – which includes life alongside younger brother Jude – Bella says she took it nice and slow in getting back to her pre-diagnosis energy levels and eating patterns. “I’m grateful to have such amazing, supportive parents who held my hand every step of the way, and wonderful friends and family who provided more than I needed with cards, blankets, meals and visits.”

Despite the love and support, adjusting to her new reality those first few weeks was challenging. “Everything felt very new and unfamiliar. All the carb counting, injections, finger pricks, it was all very scary. My life had changed and I didn’t like it one bit. I cried to my parents every night that I hated my life and hated diabetes,” she says. Then adds, “It was a really depressing time. I was so mad at diabetes for ‘ruining’ my life.” 

Still, despite the pause, process and painful pivot required of Bella in those early days, there were outside forces that required she push onward, like going back to school. “Oh, that was a challenge for sure! I was very quiet about my diabetes, and it was difficult. Everything was so new: dealing with school and diabetes every day, and with all the doctors’ appointments, too.”

Stay tuned for next week’s installment of Bella’s DiaStory, “The Lowdown.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.