Diaversary 3

Henry’s diaversary comes the day after my birthday.  His diaversary always makes me feel a bit glum, because it’s easy to imagine what life was like before diabetes: just eating without counting carbs or dosing insulin, sleeping through the night, or worrying about long term side effects. But if I’m being honest, that life—life without diabetes—is sliding further into my memory each season.

It’s Henry’s third diaversary, and it’s the first diaversary that marks the fact he’s lived longer with diabetes than without it. Yet, he doesn’t need a date on a calendar to tell him that.

Recently at a restaurant, the pre-bolus of insulin started working dramatically on Henry’s blood sugar before the food arrived. I couldn’t reach him to check his blood glucose, so Henry reached into his d-bag and got out his meter.

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He laughed, then said, “Mama, I’ll check my blood sugar. I’ve had diabetes already for three years.”

So diaversaries are about the big moments, like marking another year of living with diabetes, but really, diaversaries are about the thousands and thousands of small moments—going without, waiting, measuring, but also unexpected sweetness, like eating jelly out of the packet while you wait for your food to arrive.

So here’s to another year of the highs and lows, too much, too little, and resting in the spots inbetween.

Perspective

As of today, he’s been in Kindergarten for 100 days.

Sure it’s a 100 days of school, but the 100 test strips are only 10 days of type 1 diabetes care. So that means…

100 finger pokes

$140 dollars (without health insurance) of test strips

4 site changes

1 continuous glucose monitor change

0 nights of uninterrupted sleep

333 highest blood glucose

47 lowest blood glucose

I Can’t Count All the Snows

“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.

“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”

He looked out of the window, his arm held straight, but at an odd angle by its IV splint.

“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.

My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.


But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.

Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.

This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.

I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.


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Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.

 

Confessions of a D-Mom

Tomorrow it could dip into the 30s. I’ve been watching the weather for a couple of weeks, expecting the first plunge into freezing, so I switched out the kids’ clothes from summer to winter. And like usual, I discovered they outgrew most everything from last year, which is how I found myself in Target this weekend, shopping for boys’ pants by shoving my hands down the front pockets.

Hands deep in a pair of cargo pants, I became acutely aware of side-eye from a fellow parent and shopper. Along with side-eye, color and style are the least of my concerns when it comes to shopping for clothes for my six-year-old son with type 1 diabetes. Instead, I search for deep pockets that will hold his insulin pump and a flexible waistband that won’t pull a site out from his backside.

So there I was, innocently shopping for pants, when I found myself in a d-mom (mother to a person with diabetes) moment. Honestly, these d-mom moments are pretty routine, appearing like little blips on a radar; some are even funny, but others break my heart all over again.

Here are a few cumulative and recent d-mom moments.

When my son is grumpy, mean, or angry for no reason, I automatically check is blood sugar before I do anything else.

I can count the times I’ve slept through the night the last two and a half years on one hand.

I accidentally sent a text intended for my husband to the school nurse.

When my son told me this story the other night, I felt like we’re handing this diabetes thing pretty all right: “Mama, when I’m on American Ninja Warrior, my story is going to be this. At first I was little, but then I got bigger. I ate food that was good for me, and I didn’t get afraid of as many things anymore. I have diabetes, and at first I didn’t like the pokes. The sensor hurts more than the site, but it’s all O.K.”

I say my son is high in public.

I have a mental rolodex of carbs memorized. This makes me very unpopular at parties.

I’m less patient with willful ignorance than I use to be, but I’m more patient when it comes to failure.

Today my son was on the low side, and he took some pop corn out of the bag I was holding (and eating from). It occurred to me that we’ve never really shared a snack like that. Most of his food is weighed or measured, not eaten out of a package that contains multiple servings.

Every day diabetes takes up time, sometimes literal hours are sucked away battling new insurance restrictions or stubborn blood sugars and ketones, but paradoxically, it’s also forced me to exist in a tiny moment, like after I’ve treated a really low blood sugar. Henry and I lie on the couch, waiting to recheck his BG, and when he feels better, he tells me about this new movie he’s writing. It’s called “War of the Stars,” (I suspect some copyright infringement), and there’s these two characters called Citeloneum, he’s the goody guy, and Vitloneum, he’s the bad guy. Citeloneum has a site because he has diabetes.

 

 

 

 

Experiments in No/Low Carb Cooking: Zucchini Garlic Bread

When scrolling through social media, I sometimes pause on those sped up cooking videos that require a few ingredients. Usually, I’m appalled, and think that the simple recipe made from processed food is all that’s wrong with America (I’m thinking of you, S’mores Dip and Donald Trump). However, other times I decide to try the recipe, which is the case for Cheesy Zucchini Sticks, featured on Buzzfeedtasy’s Instagram.

Of course, people with type 1 can eat anything they want. However, it can be easier to manage blood sugars if fewer carbs are consumed. There’s a controversial method of type 1 management called the Bernstein method, of eating few to no carbs, which would require less insulin. Dr. Bernstein was diagnosed with type 1 at the age of 12 in 1946, when outcomes and control were not good. He’s now in his 80’s, living proof that his method has worked for him.

While we don’t use the Bernstein method, I do cook some meals with the objective of decreasing the carbs we consume. Last week, I decided to make a summer vegetable soup and Cheesy Zucchini Sticks.

I knew Henry would love them, but his bread, pasta, couscous loving sister would not. Please take 57 seconds and appreciate the aforementioned sister as a toddler who could not eat an entire Bing Cherry purchased roadside from the farm where it grew, still warm from the California sun that nourished it.

So some clever rebranding was in order. I called it “Garden Bread.” The rebranding worked at first.

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Garden Bread

The Verdict:

Matt, known zucchini hater since childhood, ate three pieces.

Ava, cannot eat a cherry (or any other fruit or vegetable) to save her life, gobbled down one piece, but slowed and then stopped when she spotted “something green” on her second piece.

Henry and I ate the rest. It was neither bread nor zucchini, but it was a flavorful low-carb accompaniment to our meal.  Next time, I’m peeling the zucchini first, to take care of the “something green,” but it’s back to the drawing board for names.

A Time Diabetes Bossed Us

Henry’s recent love of Angry Birds Star Wars on his iPod and the curvy roads back East let us know that he gets car sick. About 40 minutes into our 571 mile trip back from the beach, (which should take about 9 hours) he began to feel sick.

Car traveling jacks up Henry’s blood sugar, so to compensate, we increase his basal temporarily to deliver 80% above his normal basal rate, which usually keeps his blood sugar between 80 and 150. However, one look at his continuous glucose monitor (CGM) told me his BG was falling. I tested his blood for the glucose level and ketones. His blood sugar was 62 and he had moderate ketones. We’d entered the terrible T1D paradox of nausea. Insulin and fluids are what flush ketones out of the system, but with a low BG and a sick tummy, it’s difficult, if not impossible, to take in or keep down carbs so that insulin can be delivered.

I climbed to the back seat and canceled the temporary basal increase. I coaxed Henry to eat or drink any carb he wanted, but apple juice and Airheads made him gag. We pulled into a gas station, and after some really dramatic moments, he managed to swallow a Dramamine with some apple juice. We walked around, and I panicked purchased a number of candies that came in a gel form, a sleep pillow, and a roll of paper towels.

Within half an hour we were back on the road, two arrows up on the CGM, Henry drinking sugar free liquids, insulin delivered, and ketones gone. It took a while before he felt like eating, but when he did, we stopped at a place Henry named. When it came time to place his order, big tears welled up in his eyes, and he said he didn’t want to eat there. Normally, Henry loves mealtime, so this behavior threw us. Finally, he decided on a bowl of rice, black beans, chicken, and cheese, and we bolused for half of it.

Henry ate half, and saved the rest for later. Later arrived, and we bolused for the rest as Henry grazed in the late afternoon. I  watched his blood glucose rise to 200, then 265, then 310, then 381, then HIGH (on a CGM this means it’s above 400). All the while, I rage bolused more insuiln, .5, then .75, then 1.5. I poured on the fluids. With a high blood glucose and lots of fluid, we got to visit no less than 7 gas stations (and a bucolic roadside) before dinner, which we were holding off on until his blood glucose was below 300, so the kids had an 8 p.m. dinner.

Recently, we were at the Friends for Life Conference in Orlando, FL, where the closing keynote speaker challenged the audience to think of how diabetes had enriched our lives. When presented with this question, my first thoughts were sardonic. It’s easy to think of all the negative ways that diabetes has altered my life, and most significantly and importantly, my son’s life. However, the easy type of thinking is not very useful. Diabetes is difficult, and demands a complicated response. The way I see my son is beautifully difficult. I see a five-year-old with a generous spirit, a kid who has endured more medical procedures than me, even though I’ve been alive seven times longer than he has. I imagine the courageous person he is already becoming because he has to live with type 1. Diabetes has allowed me see me son, and yes, I mean, “I see you,” in James Cameron Avatar kind of way: a great empathy that is a heart always breaking open to need and contentment.

Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on

 

A few more gas station stops later, we were finally at our destination eleven and half hours after we started the trip. We’d blown right past bedtime, and when I tucked Henry in he said, “I don’t like diabetes.”

I said, “I don’t like it either. Why don’t you like it?”

“I don’t like diabetes because I have to wait to eat yummy candy like Airheads, and they taste delicious. It’s not fair”

Henry’s starting to realize that his diabetes makes him different. The times when he tells me that he doesn’t like diabetes are hard, and I know it’s imperative for me to be really present in these moments, but my thoughts spill out like paint splatter. Immediately, I think it was a poor decision to introduce candy as a treat for lows. I wonder how we could have been so shortsighted. I think about watching family members who are able to give their kids lemonade, crackers, juice, and candy without a second thought. I’m with Henry, it’s not fair.

“You know what, Henry,” I said. “It’s not fair, but because you have diabetes, that means we take really good care of you, and you’re going to be healthy when you grow up.”

I think about telling him that candy is like medicine for him, but think better of it. I want to keep as much of his childhood diabetes free as I can. I want candy to be just candy.

 

A Time We Bossed Diabetes

We travel a lot over the summer, and while staying with family this summer our kids saw real live commercials for the first time. And they wanted Airheads, Fruit Loops, Num Noms, and Mr. Clean Magic Erasers.

Thanks to a talk, “Hypoglycemia Prevention and Treatment” given by Gary Scheiner at Friends for Life 2016 we learned about candies that have dextrose, which are a quick rescue for lows, and Airheads just happen to be on the list. We jumped at the chance to hand over candy without consequence instead of chalky glucose tabs to treat our son’s low blood sugars.

It’s true that people with type 1 diabetes can eat anything they want to, and we don’t make foods off limits in our house. Instead we practice a little bit of all things. However, bolusing for extemporaneous juice or candy is an exercise in certain failure. Often, the carb will peak before the insulin starts to act, and the sugar burns off while the insulin is still acting, so there’s a high high, then a low.

Due to summer activity, we’ve often had to dial back basal and bolus settings. We know certain activities like the beach, swimming, or playing outside when it’s hot are likely to drive Henry’s blood sugar low. In fact, for Henry, lows can come 12 hours after activity.

With a summer of beach trips ahead, I rigged up a pretty neat way to keep Henry’s insulin and pump in good working order, and my husband bought lots of Airheads. In fact, he bought every flavor of Airhead, and even doubled up on the White Mystery flavor.

When Matt showed Henry all the Airheads ready to treat his lows, Henry said, “Give me some insulin so I can go low and try one.”

Sure enough, our second day at the beach caused a low of 62, which he felt, and uncharacteristically needed a little time from which to recover.

 

With each low, he bounced back, declaring what flavor of Airhead he’d try next. So far,  we’ve visited Edisto Beach, SC, and St. Augustine Beach, FL, and tried an orange, cherry, and blue raspberry Airhead. Lots of summer and sugar stretches joyously ahead.

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Orange Airhead, Cool Hat, St. Augustine Beach, July 2016

Sugar Surfing Into Summer

We live in a small Midwestern town, where it’s a winter’s winter about five months out of the year. In deep winter, the temperature (not the windchill, the actual temperature) can reach -24 Fahrenheit. In mid-March, just when the snow, salt, and ice threaten to become a forever feature, there’s a little less gray and the icicles drip away. In the next month, the snow melts, tulips emerge, and the town’s most popular ice cream joint opens for the season. There’s always a line of people and taillights, celebrating a baseball game or summer evening.

Having type 1 diabetes does not prohibit what people can eat. People with T1D can eat anything; however, many people choose to limit or eliminate certain foods simply because it makes blood sugars potentially easier to manage. Right now, we don’t eliminate food, but eat a little bit everything in moderation. When we get an ice cream, it’s a celebration.

Recently, we’ve discovered the power of pre-bolusing and are starting to practice some of Dr. Ponder’s Sugar Surfing advice. It can be nerve-racking to pre-bolus a large amount of insulin for a restaurant meal or special treat, particularly when there’s little control over when the carbs will arrive. Matt is a lot better about waiting out the downward slide than me. I nervously check and recheck the CGM.

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on our way back from the local ice cream joint

But then the sugar starts to kick in— the rise is more gradual and less extreme. The insulin action time better matches the carbs. We’ve figured out if we give enough insulin to cover for 30 carbs that by the time we’re through the line, with a strawberry ice cream baby cone in hand, that his blood sugar usually evens out to about 145 half an hour later. I’ll take a rolling line after ice cream any summer night.

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Hello, summer. 

“I Can Spell to 100”

I didn’t have time to be nostalgic about my youngest kid participating in Kindergarten Round Up, (a preview of elementary school for preschoolers entering Kindergarten next fall). Instead, there was a flurry of emails to the school administration, nurse, and staff. There were meetings, apps were downloaded, and then the morning of Kindergarten Round Up rolled around.

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It’s hard to bolus for emotions.

Just a quick glance at Henry’s face shows how excited he was, and a quick look at his blood glucose on his Dexcom CGM (continuos glucose monitor) shows how anxious he was to attend the same school as his big sister.

Adrenaline is a hormone that’s secreted during stress, and it raises the blood sugar. We’re learning that many things raise or lower blood glucose: a growth spurt, illness, puberty, exercise, emotions, a unicorn jumping over a blue moon after a black cat crosses its path, and just because.

Days before we walked through the school doors, I knew it would be another vacillating moment of living with diabetes: a challenge to preserve the typical experience, while ensuring safety and health. And it was. Henry’s first introduction to school was meeting with administration and the nurse, listening to us talk about his blood sugar. But he’s heard us talk about his blood sugar so much that it’s old news, no news. But Kindergarten, that’s new news. He was bouncing, happily telling everyone, “I can spell to 100.”

And he can spell (and count) to 100. If a blood glucose of 300 is any indication, this kid is excited to go to Kindergarten.

Sleep, Snow, & April

Earlier this week, Beyond Type 1 posted an article, “I Can’t Sleep,” by Sara Jensen. In the article, Jensen describes the lack of sleep, stress, and ceaseless work that create Caregiver Anxiety. I’ve had every experience that Jensen describes, from a doctor admonishing me that my health is being negatively impacted due to stress to worrying that if I sleep through an alarm my child could die.

She writes, “I lay back down and I breathe in, I breathe out, my mind tells me I won’t be able to fall back asleep, and when I do, the alarm goes off again. It feels like I never closed my eyes at all,” which perfectly describes the mixture of sleepless exhaustion and stress parents of kids with T1D often experience.

At our house, some nights blur by in a flurry of insulin, alarms, juiceboxes, and more alarms.

Recently, I traveled for work, and during that week, Henry was being cared for by his father, and my mom, a nurse. This wasn’t my first time away from him after diagnosis, nor was I afraid. I knew he was in good hands. Yet, 1,806 miles away I woke about every two hours, suddenly, as though a giant animal had jumped on my chest, forcing out all my breath. But instead of an alarm or lights blaring, there was just the night. It was quiet. I looked at Henry’s BG on my phone, it was usually in range, and I’d go back to sleep.

After about the fourth night of waking up in a state of emergency when there was no emergency, I realized how profoundly T1D care impacts the most basic aspects of life: sleep, not sleep, food, and how I think about my son. But profoundly realizing something doesn’t change it. I woke up the same way the fifth, sixth, and seventh nights because I’d been waking up this way for two years– the same animal feeling, but I wasn’t afforded quiet to think about it– there was an obligation or almost emergency to contend with, asleep down the hall, in need of insulin or juice.

When Henry was diagnosed with T1D, what I didn’t know about type 1 could fill the stratosphere. For example, I didn’t know that I wouldn’t be able to sleep through the night for the next two years. Now I wonder if I ever will sleep through the night.

Before I left for work this morning it was blustery, while a few wild snowflakes dashed down. I checked my phone before the workday began, and I laughed when this image from FB popped up from three years ago.

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I laughed because when I looked up from the screen, through the kitchen window I watched it snow on daffodils, but there was a time that I didn’t know what I didn’t know. Three years ago not a snowflake was in sight: eleven more months to live without T1D, to sleep through the night, to eat food without weighing it, without weighing so many vital daily decisions that have become necessarily mundane.

The thing about winter in the midwest is that snow turns to mud, turns to flower. It’s just a waiting game, like waiting for a blood sugar to rise or fall.