By MARK and STACIE OSHIMA
The Breakthrough T1D Walk is on Nov. 16!
Fall is upon us, the kids are back in school, and that means the Breakthrough T1D Walk (formerly JDRF One Walk) is right around the corner. We would love for you to join Evan’s team, Evan’s Evangers, at the Walk at Angels Stadium on Sunday, Nov. 16, and consider making a donation to support this cause that means so much to our family: https://www2.breakthrought1d.org/site/TR?fr_id=10319&pg=team&team_id=361639
Adulting
It’s hard to believe that this will be our 11th year at the Walk — when we started, Evan was only 6 years old. Evan is now 17, a high school senior, just a few months shy of legally being an adult.
“Adulting” wasn’t a term that was around when I was his age, and according to Merriam-Webster, adulting is the act or practice of attending to the ordinary tasks required of a responsible adult. It makes sense that a 17-year-old would be at that stage of life where he has grown in independence and is able to manage ordinary tasks like an adult.
Evan has worked, volunteered, and served in his community. He has his driver’s license, cooks meals, does his laundry, washes dishes, and cleans the bathroom and house.* (*He sometimes needs gentle, repeated reminders for some of these tasks …) Overall, Evan has definitely come a long way in becoming a more responsible adult over the years.
But the definition of adulting specifies that one is able to conduct ordinary tasks required of a responsible adult. Evan has lived with Type 1 diabetes (T1D) for 11 years. There is nothing ordinary about living with a disease like T1D. According to Breakthrough T1D, people with T1D have to make an additional 180 decisions every day to stay alive. So Evan has the added burden of these responsibilities when it comes to living with T1D, much less adulting.
Some of the Not-so-ordinary T1D Tasks
Evan has had to learn how to manage the complex and often frustrating medical administrative side of his diabetes. He knows what a PBM is and understands the differences between PPOs and HMOs. He has experienced how complicated it can be to get his medications filled, needing to communicate directly with the doctor’s office, insurance provider, multiple pharmacies, and separate suppliers of his diabetes medical equipment.
Although there is still no cure for T1D, he has to request that paperwork be resubmitted, verifying that he still has this disease, when his prescriptions expire.
He knows which supplies to order through our local pharmacy vs. the mail-order pharmacy vs. the specialty diabetes equipment provider. He knows how expensive his supplies are even with insurance coverage. He knows to order certain supplies through pharmacy benefits vs. durable medical equipment — a tough and very expensive lesson that we learned only after years of paying more than a 700% premium for ordering it under the latter category.
He knows to give himself a shot when his blood glucose (BG) hasn’t been responsive to repeated insulin dosages through his pump. He knows the importance of monitoring how much active insulin is in his body so he doesn’t unintentionally “stack” it (overdose), even though he may be experiencing a long-lasting, stubbornly high BG.
He knows how different types of carbs affect his BG and how to calculate carbs in everything he eats, whether he’s eating food from the school cafeteria, at a restaurant, at a friend’s house, or at home. He knows he needs to dose insulin and sometimes wait longer than an hour before he can start eating his meals when his BG is really high (happened twice just this week). He knows how to adjust his food intake when it comes to engaging in physical like sports or working out.
He knows he needs to wake himself up in the middle of the night to drink juice when his BG is tanking. He knows he needs to be extra careful and not overdose insulin when his continuous glucose monitor (CGM) is repeatedly alerting him of a sky high BG every 15 minutes from 2 a.m. through 3:30 a.m. (happened last month). He knows struggling with waking up to do these things jeopardizes his opportunity to go off to college and live in the dorms.
He knows how to analyze his BG trend data on his own and adjust his pump’s programmed insulin dosage based on his BG patterns.
He knows he needs to change his pump infusion site at least every three days and his CGM every ten days, always rotating sites on his body to minimize scar tissue build-up.
He knows he always needs to bring his fully stocked diabetes bag (insulin, pump supplies, syringes, emergency glucagon, juice, glucose tablets, lancets, test strips, BG meter, ketone strips, alcohol wipes) wherever he goes and to keep a stash of Smarties candies in his car. He knows to refresh his frio bag every few days to make sure that his insulin doesn’t get too hot.
He knows that even if he counts his carbs perfectly and manages his diabetic needs without fault, his BG can fluctuate wildly throughout the day.
He knows that people with T1D are more prone to losing their eyesight and experience neuropathy, heart attacks, strokes, and kidney failure. He knows that severe high and low BG can lead to seizures, coma, and death. He knows there is currently no cure for T1D and that he is dependent on insulin for the rest of his life.
Not Ordinary at All
Evan is very much an ordinary 17-year-old, growing in independence and adulting, but there is nothing ordinary about living with T1D. Evan and the 1.5 million Americans with T1D aren’t ordinary at all — they are extraordinary.
They are multi-tasking experts. They are resilient. They are always on call, responding to their bodies’ fluctuating, unpredictable BG. And with your support, they are more hopeful than ever for a future with better treatments and a cure.
We would love for you to walk with Evan’s Evangers or donate to his team to help Breakthrough T1D continue to fund life-changing Type 1 diabetes research and create a world without T1D. Thank you! https://www2.breakthrought1d.org/site/TR?fr_id=10319&pg=team&team_ id=361639