carbs

2nd Diaversary: 731 Days of Living with T1D

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I like my birthday less than I used to. Of course it still happily marks another year of life to celebrate with friends and family, but March 5th also marks the last day my son would ever not have type 1 diabetes. On March 6, 2016, my son has been living with (diagnosed) T1D for 731 days (there’s a leap year in there), roughly 37% of his life.

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Semisweet Soap (0 carbs)

We haven’t figured out how to mark or celebrate his diaversary, a neologism for the anniversary of a diabetes diagnosis. I think we’ll wait for Henry to take the lead on this. However, I’ve been reflecting on this upcoming date for a few weeks now. Moments like this are mile-markers because they disrupt the routine of counting carbs, insulin delivery, and correcting highs and lows. If I think about the preponderance of diabetes care all at once, it’s overwhelming, so the task-to-task perspective allows me to get up each day, put my boots on, and do it all again. Yet, around these mile-marker moments, I usually peek out the window at the vast appalling and inspiring mountain range that is T1D management.

On March 1st, I recorded all my actions related to T1D care. Here’s one day of T1D care. It’s only one day. Some days are better. Some days are worse. We’ll do it all again tomorrow.

KEY

basal= background insulin being delivered by pump

bolus= a larger amount of insluin delivered at meal and snack to cover carbs

BG= blood glucose

CGM= continuous glucose monitor, provides an estimate of Henry’s blood glucose every 5 minutes

Dexcom Share allows us to see blood glucose values on our phones

ezBG= pump function calculates how much insulin to deliver to correct a high BG

IOB= insulin on board, the amount of insulin that has been administered and is still circulating

12:03 a.m.- check BG by blood, 74 with an arrow down to the side, half a juice box

2:00 a.m. – wake up to alarm, check BG on CGM, 147 with an arrow straight across go back to sleep

5:00 a.m.- wake up to alarm, check BG on CGM, 220 with an arrow straight across, so check BG by blood, it’s really 309, give 1.25 units of insulin, go back to sleep

7:00 a.m.- wake up to alarm, check BG on CGM, 137 with an arrow down to the side, so I get ready for work

7:30 a.m.- check BG by blood, 130, while Henry is still asleep, prebolus 1.5 units of insulin for a breakfast of 25 carbs

7:35 a.m.- help Henry get dressed so that the pump and CGM sites stay secure

7:55 a.m.- Henry eats breakfast, a low carb, sugar free muffin and a scrambled egg with cheese

8:35 a.m.- check BG on CGM 107 down to the side, get d-bag ready for school

9:05 a.m.- drop Henry off at preschool, get CGM on Wi-Fi, check BG by blood, 210, give .15 units of insulin to correct high

9:15 a.m.- listen to a diabetes podcast during morning email and class preparation

10:08 a.m.- text from Henry’s preschool teacher/s: Did another ezBG, I look at BG remotely, 320

10:59 a.m.- right before teaching, look at BG remotely, still 320

11:17 a.m.-text from Henry’s preschool teacher/s: We did another ezBG at 10:30 and it gave another .3. He had 1.07 IOB at the time. 

11:45 a.m.- Husband calls during class, saying he went to check on Henry, who has large ketones. Pump said to give 6.6, but this would be way beyond the most insulin Henry’s ever had at once, and it made my husband nervous, so he gave Henry 5.6 units of insulin to correct for large ketones and cover his lunch of grilled cheese and tomato soup. 5.6 is the second highest amount of insulin Henry’s ever had on board.

12:01 p.m.-look at BG remotely, 329 with an arrow up at the side

12:15 p.m.- listen to voicemail from drugstore about prescription problem with test strips

12:45 p.m.- while on a way to a meeting, read text from husband: I called the school and told them to go ahead and give the additional unit I was worried about, look at BG remotely, 363 with an arrow up at the side

1:15 p.m.- during meeting, unsuccessfully try not to think of Henry’s ketones and blood sugar

1:53 p.m.- text from Henry’s preschool teacher/s: We gave another unit and are continuing to push water. Will have cheese stick and beef stick for snack, husband texts back and asks that Henry be given 1 additional unit of insulin to help clear ketones.

2:30 p.m.- look at BG remotely, 263 with an arrow straight across

2:33 p.m.- look at BG remotely, 260 with an arrow straight across

2:38 p.m.- look at BG remotely, 260 with an arrow straight across, realize I have to stop obsessing and get some work done

3:08 p.m.- look at BG remotely, 141 with double arrows down, which means Henry’s BG is falling faster than 3mg/dL per minute, text to his teacher/s: Now he’s falling fast! What’s his real BG and how much IOB? 

3:16 p.m.- look at BG remotely, 111 with double arrows down, call classroom and talk with student worker who tells me that IOB is 1.16, I tell her to give Henry 2 glucose tabs, text husband this information

3:25 p.m.-look at BG remotely, 95 with double arrows down, I tell myself I am a logical person, that the sugar will do its job and the CGM is lagging, so he’s probably leveling off, not spiraling down

3:29 p.m.- text from Henry’s preschool teacher/s: 97 and .92 IOB, gave two tabs 15 min. ago, CGM says 84 with double arrows down

3:58 p.m.- look at BG remotely, NO DATA

4:16 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across

4:31 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across, then Henry walks through the door with his papa, who said his BG by blood was 112

4:46 p.m-. my phone buzzes with a Dexcom alert, I don’t check, knowing it’s still catching up form the fast drop

5:40 p.m.- check BG by blood, 95 and prebolus 1.4 units of insulin for a dinner of 40 carbs

6:10 p.m.- during dinner my phone buzzes with a Dexcom alert, CGM says BG is 74 straight across

7:00 p.m.- check BG on CGM, 121, an arrow straight across

7:28 p.m. – help Henry change out of his clothes and into his pajamas to preserve pump and CGM sites

7:32 p.m.- check BG by blood, 111, give .55 units for a high protein bedtime snack of 11 carbs

7:40 p.m.- add some new basal times and programs to avoid nighttime highs, which have been more or less constant for the past few days

7:56 p.m.- check BG on CGM, 160, an arrow straight up

8:56 p.m.- check BG on CGM, 157, an arrow straight across

9:32 p.m.- check BG on CGM, 134, an arrow straight across

9:46 p.m.- silence reminder alarm from pump to check BG 2 hours after insulin delivery

10:10 p.m.- check BG on CGM, 181, an arrow straight across

10:39 p.m.- check BG on CGM, 177, an arrow straight across, decide to check BG by blood, 209, give .7 units of insulin

11:32 p.m.- check BG on CGM, 168, an arrow straight across

11:42 p.m.- check BG on CGM, 158, an arrow straight across, set alarm for 12:40 a.m., 3:00 a.m., and 6:00 a.m.

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today 

 

 

T1D, Tummy Bugs, & Time

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About this time last year, Henry was taking a bath when he threw up. Matt began checking for ketones and calculating how much insulin he could or couldn’t give to a kid with a tummy bug, while I ran out to the grocery to purchase lots of soda, popsicles, and jell-o with sugar.

Tummy bugs are tricky with T1D. Ketones develop with sickness and when there’s not enough insulin to break down the glucose. In someone with T1D, what clears ketones is insulin and massive hydration, but when someone with T1D is vomiting, the person can’t keep the fluids down so that insulin can be administered safely. As ketones and dehydration increase, probably coupled with a low blood sugar, the likelihood of DKA
(diabetic ketoacidosis) increases. Usually, tummy bugs send Henry to the hospital. Sometimes we ride it out in the ER with an IV and sugar drip, and sometimes he’s admitted to the pediatric unit.

A year ago I was standing in line, anxious and worried, about to purchase a bunch of sugar. As the cashier was ringing my items she asked, “Are you planning a party?”

Hurried and harried, I replied, “Yeah, something like that.”

She then asked me if I’d like to donate a dollar to the JDRF and pointed toward a stack of papers in the shape of sneaker. Our local grocery store participates in the JDRF sell a sneaker campaign, where a person can add $1 to his or her total and the money goes to the JDRF. The total irony of that insane d-moment sunk in, and I inhaled to stop any feeling from overwhelming me.

I said yes, and signed Henry’s mom dx’d 3/6/14 then ran to my car, hoping to get all this sugar home in time to help. A few hours later found us in the ER, and Henry recovered quickly.

There are significant dates, diaversaries (diagnosis + anniversaries), and yearly campaigns, that mark the emotional passage of time that comes from living with a chronic condition. Last week I was standing in the grocery store, purchasing food for dinner, Henry was healthy, playing in the snow at his preschool, a young boy had just passed away from complications resulting from T1D, DKA, and a tummy bug. The clerk asked if I’d like to donate a dollar to the JDRF.

I said yes, and signed Henry’s mom dx’d 3/6/14 then walked to my car, thinking about Andrew’s family, about Henry a year ago, about the relentlessness of time across a chronic condition.

When New Recipes Go Wrong

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Welcome to type 1 diabetes: where you should know how much you will be eating, when, and what it’s made of— it’s like having a meeting to plan a meeting for the meeting.

Our son’s blessing (and curse) is that he loves food. Two weeks after his diagnosis at three-years-old, we started pre-bolusing because we knew he’d eat the food on his plate and probably ask for more.

In our house, no food is off-limits, but we try to eat locally and responsibly: a little bit of all things. We’ve observed vegetarian diets, belonged to a CSA, garden, and eat fast food on a bi-annual 1,700 mile road trip.

A little bit of all things. All this is to say, in general, we read nutrition labels, understand them, and conduct a quick benefit analysis for the food and occasion. If you read nutrition labels, you’ve probably figured out that about half of the shelf-stable food sold in the typical American grocery store should be a rare treat instead of a staple.

No food is off-limits for our child with T1D, but we’re using our insight of carbs and insulin (that we can see with a Dexcom) to inform more of our family meal and food decisions. Lately, I’ve been experimenting with a few substitutions: almond milk (1 carb per cup, instead of cow’s milk, 12 carbs per cup), applesauce and ripe bananas as a sweetener, almond meal and coconut flour, and chia seeds. We rocked a post breakfast BG with these Paleo banana chia bites.

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An ounce of chia seeds contains 12g carbs, 11g fiber, and 4g of protein. I was fairly certain we’d come across a diabetes superfood. Then I made this chocolate pudding, that uses dates as a sweetener, almond milk, cocoa powder, and chia seeds.

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WTF chia seeds? We had something special, then you had to go and ruin it with an overly sweet date.

 

 

‘Tis the Cookie Season

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A few weeks after starting Kindergarten, I noticed a blue ring around my non T1D daughter’s mouth. When I asked her about it, she quipped, “Brain’s birthday,” which I later found out meant that with 24 kids in class over 36 weeks of school means  a birthday celebration every two weeks. Plus holiday parties. Even before type 1 diabetes entered our family, we’d reserved sweet treats for special occasions. If a child asks for something like a grocery store cupcake, we generally respond with, “It’s probably not a good idea for anyone to eat that.” Sure, a grocery store cup cake once in a while is fine, but treats like this seem to have permeated childhood.

I think most parents aren’t thrilled about the idea of their kids eating this kind of food. Now imagine your child has type 1 diabetes.

Generally, this scenario can go two ways. The child with diabetes is told he or she can’t have the treat by a parent volunteer or teacher, so then the kid gets to eat nothing (or sugar-free Jell-O) while watching his or her classmates enjoy deli cupcakes or cookies. In the second scenario, the child gets to eat the treat, because children with type 1 can eat anything, but it’s just impossible to get synthetic insulin to match the metabolic challenge that is a partially hydrogenated, shelf-stable, steroid level sugared, red dye #3 filled deli cupcake. So the kid with type 1 eats the cupcake, and has an elevated blood sugar for several hours, which is difficult to bring down, and during this elevated blood sugar, the kid feels foggy, tired, achey, thirsty, and upset. So, what’s the right choice? There isn’t one.

As parents, we’ve fallen on both sides of the sugar divide. We’ve let our son eat cupcakes at birthday parties and battled 300-400 blood sugars into the night that don’t seem to budge no matter how much insulin we pour on it. In other instances, we’ve brought our own low carb “treat,” avoided events, or distracted him. Moments like this reveal that diabetes is often a choice between bad and worse.

As we enter another season of sweets, we’ll fall on both sides of the sugar divide, and recognize that when a parent has to choose between bad and worse, it’s a pretty lousy feeling.

This week we were at a birthday party, for which we’d planned all day.  We knew the carb counts of what would be at the party. We’d purposefully kept our son’s carb intake light in preparation for the party. We had a rockin’ prebolus and temporary increased basal. At the dessert buffet, we let Henry choose anything he wanted to eat, and he ate gold fish, clementines, a cupcake, pretzels in a pool of white chocolate, peanuts covered in chocolate, and pop corn. He selected almost everything except for this cookie, but he kept circling back to it during the party.

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During his third trip to the table, I walked over to talk with him about it. He said, “Mama, look at those cookies.”

“I know,” I said. “Those cookies look really silly. I think they were made to look like a Dr. Seuss character.”

“Yeah,” he said, and he just stood there a long time. A long time. Not taking one. Not asking for one. Just looking.

“What do you think they taste like?” he asked.

Not wanting to pile more sugar on what was a high and rapidly rising blood sugar, I said, “I think they taste sour.”

As these words were coming out of my mouth, I knew they were simultaneously the easy and worse choice. We never tell Henry that he can’t eat something because he has type 1 diabetes, but in a way, I just did.

He walked away from the table and played soccer with a balloon as we helped clean up for the next hour. We headed over to our hosts’ house, where all the cookies and party treats followed. We ordered Chinese food for dinner, and learning from our previous Chinese food experience two weeks ago, we went bold with insulin and ran a combo bolus coupled with an increased basal. About 45 minutes after dinner, Henry’s blood glucose was 70 with 1.39 units of insulin on board.

“Hey Henry,” I asked, “Do you want to try one of those cookies with the silly eyes?”

“Yeeeeeesssss,” he shouted, and ran to the kitchen.

He came back with the cookie accomplished, and while dusting the crumbs from his thumbs on his shirt, he said, “Hey mama, those cookies don’t taste sour.” He said it with this kind of crazy half-smile that told me he was dubious about sour cookies from the get-go. Smart kid.

99 Diabetes Problems and Breakfast Is One Of Them

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Having type 1 diabetes means following a pattern of exact measurements and calculations, all the while knowing that a pattern or desired result could likely not be the outcome. One day, Henry can run around like a madman at the playground and then come home to compete is some serious sofa jumping, and sometimes this physical activity will cause him to have a low blood sugar, but other times his blood sugar can go up.

However, there is a constant calculation in type 1, a perfect diabetes storm: food, stress, and biology, otherwise known as breakfast.

Food

Common breakfast foods such as sugary cereals, pancakes, waffles, and bagels are refined carbs that jack up blood sugars. The quickest way to see two arrows up (which indicates a rapidly rising blood glucose) on a CGM is to eat these common, simple carb-rich breakfasts foods.

Stress

I’m always confused by those scenes on T.V. shows and movies where families sit down in work clothes to pitchers of orange juice, bacon, and omelets before work and school. Really? Does this really happen? Really? A montage of a morning scenes at my house involves waking up two young kids, brushing hair and eating at the same time, putting at least one article of clothing on backwards, forgetting something, the kids playing a last minute game of school with stuffed animals just minutes before they go to their actual school. And diabetes care.

Biology

Breakfast is literally breaking a fast. When we go a long time without food, our body makes its own energy through glucoseneogensis, which is exactly what the word sounds like: the creation of new glucose, which is done from glycogen stores in the liver. In someone without T1D the beta cells of the pancreas send a message to the alpha cells of the pancreas to start the process of glucoseneogensis, which prevents our blood sugar from dropping too low, or around 70, in long time periods without food, like overnight or interminable work meetings.

In someone with T1D, the beta cells are non-functioning and therefore can’t communicate with the alpha cells. So the result of this is sporadic and unreliable glucoseneogensis. If endogenous (originating inside the body) glucose is being circulated, it takes exogenous (coming from outside the body) insulin to bring a blood glucose back in range. People with T1D are taught to account for exogenous glucose (glucose coming from food), but endogenous glucose is a crapshoot.

I don’t have type 1, and I’ve worn my son’s continuos glucose monitor on occasion. In the picture below, you can see a CGM on the top, which is my son’s. He woke up with a high blood glucose just below 200, and experienced a quick rise from the carbs he ate for breakfast. I woke with a blood sugar around 80, and it rose after I got up, cooked, and got the kids ready. The arrow points to where my blood sugar rose because of glucoseneogensis, but my endogenous insulin production quickly brought my level back down. The rising line on my son’s CGM shows just how difficult it is to get biology and math to line up.

morning glucose

Top CGM: T1D with high waking BG post breakfast with insulin and carbs, Bottom CGM: non T1D with waking BG around 80 and glucoseneogensis

Here’s one of the great challenges of diabetes care: a person caring for type 1 diabetes has to make decisions that simultaneously require anticipation and reaction. Every morning, we have to react to the waking glucose value and anticipate the food, activity, emotion, and invisible metabolic processes that Henry will encounter during his day.

It’s taken a while, but here’s how we’re navigating the perfect storm of diabetes and breakfast.

Food

Now that we’re paying attention to food, it’s really obvious that everyone should not eat some things. On occasion, I’ve worn my son’s CGM, and I can watch my non T1D blood sugar rise after eating a few crackers or a bit of bread. When I eat a salad or lean protein, there’s no rise in the line that indicates my blood sugar. It’s an easy conclusion: some foods, usually shelf-stable refined carbs, should not regularly be eaten.

For breakfast we try to balance our son’s plate with a fat, a protein, and carb. A typical breakfast for him might be something like an egg sandwich (check out this low carb bread) with cheese and an apple, or a wholegrain waffle with sugar-free syrup, sausage, and an egg.

Stress

I got nothing here. Diabetes makes everything harder. In related news,  (see above) we’ve opened a casual breakfast diner at our place.

Biology

Diabetes brings consistent inconsistencies. This morning Henry’s waking blood sugar was 94. Yesterday, it was 186. His blood sugar will be inconsistent, but we can consistently pre-bolus. Lately, while our son is still waking up, often in bed, or as part of getting dressed, we pre-bolus his insulin for breakfast. As his body goes through the metabolic process of waking up, and we complete the morning tasks of getting ready, this is a great time to pre-bolus and let the insulin’s onset of action time line up better with the carbs he’ll be eating in about 15-20 minutes.

With all this science, research, and effort, here’s yesterday’s two-hour post breakfast data.

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Looks like we’ll be pre-bolusing and serving up eggs over easy at Casa Del Semisweet from now on.

 

Announcing our first GIVE AWAY!

You’re invited to comment and with a recipe, link, or breakfast idea that’s blood sugar friendly. I’ll leave a few ideas and links in the comments to some breakfast foods we’ve been trying. If you post your comment by December 31st, a winner, at random, will be selected to receive a bar of handmade Semisweet Soap. I’ll contact the winner for shipping information, and we only ship within the U.S.

Trick-or-Treat Cheat Sheet

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When our children were very young, we trick-or-treated in a neighborhood of Los Angeles where our good friends lived. It just so happened many scenic and sound design, as well as prop folks, who worked in the movie industry, lived here. Hollywood loves Halloween. It was not uncommon for a home owner to create a haunted house in his or her front yard, or for macabre Halloween scenes to be staged in rented trailers and placed in driveways.

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As new parents, this holiday geared toward children, celebrated in a truly fantastic way, hardwired its way into the robust and fun experiences we wanted to give our children in their childhood.

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Fast-forward about 1,800 miles and almost two years, when our son was diagnosed with type 1 diabetes; last Halloween was his first trick-or treating experience with type 1 diabetes. Halloween is just one of the many occasions that makes parents of children with type 1 diabetes more creative, vigilant, and exasperated.

I understand, there’s multiple ways for families living with type 1 diabetes to navigate Halloween: a candy buy back, or perhaps a “switch witch” leaves a desired toy in exchange for a pile of candy.

Last year, I fretted and worried. We put out a teal pumpkin, and yet I was determined that our son would experience every ounce of this holiday, just like any other kid with a fully functioning pancreas. Secretly, I was prepared for a candy buy back. I had a roll of quarters ready, as well as a really neat Lego set two swap for candy, but we didn’t need either.

What we did need, was a really cool cheat sheet that listed common candy servings and carbs. There’s lots of lists out there, but we used one from the JDRF. Here’s this year’s JDRF Candy Carb Counts. I printed several copies to keep in my back pocket and invested in a nice Surefire flashlight. I cranked Henry’s basal up a bit, and in the oncoming cold midwestern winter, this fireman raced door to door, eating chocolate along the way.

Henry's first Halloween with type 1 diabetes

Henry’s first Halloween with type 1 diabetes

You know what? He went low, a couple of times, but no problem. We had a whole bag of fast-acting carbs to deal with that.

Teal Pumpkins Are Hard

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So, there’s this awesome dad, who hand delivered notes to his neighbors before Halloween, to explain that his son was on a Ketogenic Diet, and could not have any sugar because it could trigger seizures. The father attached a small toy to each letter, so that his son, like any other goblin, witch, or ghoul, could enjoy trick-or-treating.

Parenting is a paradoxical slog into empathy, sacrifice, and joy. Now complicate that journey with a condition, syndrome, or diagnosis, which means one guiding hand tries to soften the blows the world will deliver, while the other toughens the exterior to face the world. Sometimes, the right confuses the left.

After our three-year-old son was diagnosed with type 1 diabetes, we started seeking out opportunities that would simultaneously educate and prepare our son for the world and the world for our son.

There’s a teal pumpkin project, whose pledge promises “extra kindness to kids” by supplying “non-food treats at the store like glow sticks, stickers, bracelets, and more” on Halloween (www.foodallergy.org). Last year was our son’s first Halloween with type 1 diabetes, so we had a teal pumpkin and passed out stickers, play-dough, and tattoos instead of candy. He trick-or-treated in our neighborhood and collected 100% candy, which we let him eat a little bit of over time, and with a lot of extra insulin. The left and the right.

This year, we were planning the same, but teal pumpkins are hard. While searching for non-food treats at the fourth store in two weeks, I encountered this display:

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in the health food section of our local grocery chain, next to boxes and boxes or gummy treats, which have 17 carbs per pouch, and are most certainly food, violating pledge item #2: “non-food treats.”

So, instead of optimistically shopping in the adjacent town for Halloween non-food treats, I bought three bags of Smarties. I figure the left over Smarties, (6 carbs per roll), will become medicine for my son to treat hypoglycemia.

Ironically, I’ve seen more information and displays about teal pumpkins this year than last, but less feasible ways to create a teal pumpkin trick-or-treating experience. I suppose, with most awareness campaigns, it’s two steps forward and one back. On one hand, it’s good that there’s increased awareness, but the increased awareness shines light on just how gaping and insurmountable the problem is.

Really, I’m not that concerned with how difficult it is to create a house that can host the teal pumpkin project. Rather, I’m concerned with how easy it is not to. I live in the midwest, a region famous for producing corn. Sometimes, I drive just outside of town and am bewildered at the fields, both magnificent and damning.

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What I see has implications beyond type 1 diabetes. I see a tradition of family farms lost to big agribusiness. I see feed-corn, industry, profit, hardly getting-by, and fields and fields of soft drinks (and let me be clear, in the right moment, a soft drink could save my son’s life). I see candy that’s nested in bowls and handed out at banks, offices, and parties. What I don’t see is how we greeted each other before a shelf-stable promise of sweetness.

When my sister and I were little, we trick-or-treated the length of our mile-long dead-end street, past an eerie cemetery, where westward settlers who died on the stagecoach route in the 1700 and 1800s were buried. The very last house on the street was famous, in the neighborhood, for giving out decidedly tongue-in-cheek treats. One year, each trick-or-treater got six pennies, another year a box of raisins; my two favorite years they passed out dental floss and toothbrushes. Kids were always milling around the house, exclaiming in mock-protest, outrage over their treats. But the owners’ message was clear: “You made it this far, now take care of yourselves.”

The message about teal pumpkins is out, but why is it only one day a year? Why are there bowls of candy in offices? Why do kids meals come with free soft drinks and desserts? When did we cross the message of care with sugar?

No Added Corn Sugar

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I’ve always read nutrition facts, but now I analyze nutrition facts because I have to depend on the the carbohydrates to determine how much of a life sustaining (or ending) drug, insulin, to give my kid. The first trip to the grocery store after our three-year-old son was diagnosed with type 1 diabetes was shocking. Our local grocery store has a nutritionist, and shortly after explaining why I was looking for certain products he said, “A grocery store’s a bad place to be if you’re diabetic.” He wasn’t saying anything I hadn’t already felt, but where else do you get food in March in the midwest?

I was at the grocery store for three hours, reading the nutrition labels for every food we typically eat. Freezing, I stood at the dairy case shaking my head at the yogurts, not because Henry couldn’t eat yogurt (he can), but because of all the added sugar in most every food we eat.

We’ve always been a family that cooks from whole ingredients, belongs to a CSA, and frequents farmer’s markets. However, we still have snack foods and sweets in our house. We’re pretty moderate— a little bit of most things, but having type 1 diabetes at our table has made our intentional choices even more intentional.

Reading nutrition labels and portioning food is a good reminder of just what and how much we should be eating.

I came across Eve O. Schaub’s memoir, Year of No Sugar. For one year, Schaub and her family of four ate only food with no added sugar. As they embarked on this year, the family had to discuss what the ground rules were and what defines no “added sugar.” Schaub was inspired to start the project after watching the amazing lecture, “Sugar: The Bitter Truth,”  by Dr. Robert Lustig, a Professor of Pediatrics, Division of Endocrinology at UCSF.

In case you don’t watch the 90 minute lecture, here’s the take away. Since the 1950s Americans are about 20 pounds heavier. We eat more sugar and carbs than we use to, and here’s the science part (45:00 into the video): fructose is metabolized in our liver in a way that’s similar to alcohol. Dr. Lusting says chronic fructose exposure results in metabolic syndrome:  obesity, lipid imbalance, and type 2 diabetes.

I know type 1 diabetes and type 2 diabetes are two separate diseases, with two separate etiologies. Type 1 is an autoimmune disease and type 2 is a disease associated with the interaction of genes and lifestyle. Since our son lives with type 1, we’ve become more aware of just how much sugar is in everything we eat. Constantly reading nutrition labels is a reminder of just what we should and shouldn’t be eating. Focusing on carbs and sugars has also shown us that  sugar is ubiquitous, so maybe it’s time to change the conversation around type 2 diabetes from one of shame and blame to one of regulation and education when it comes to the food supply in America.

Thirteen Ways of Looking at Dexcom Share Data

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Wallace Stevens, an American poet, wrote complex verse that uses precisely abstract language to scuttle between imagination and reality.  Check out his poem, “Thirteen Ways of Looking at a Blackbird” and “The Snowman.”

We’re three days into the semester, so I’m back in the classroom and Henry is in preschool. There are many moments where my thoughts zoom from reality to imagination before and after I look at Henry’s blood sugar on my Dexcom Follow App. I know he is being well cared for, but there’s always the reality of having type 1 diabetes. Here’s the thing: if you have type 1 diabetes, this means within a 24 hour period it will be difficult, and unlikely, to keep a blood sugar between 90-180. And if a blood sugar happens to remain within the 90-180 range, it is a good moment, but it’s only a moment before the insulin keeps working after the carb is digested, or an emotion elevates a blood sugar, or a correctly counted carb misaligns with correctly dosed insulin and the number soars.

If you’re not familiar with type 1 diabetes, here’s a quick primer. A generally safe blood glucose range (for the pediatric person with diabetes) is 90-200. Below 80 is considered “low” or hypoglycemic, and requires immediate treatment because the immediate consequences are seizure, unconsciousness, and worst of all, death. Above 240, or “high,” hyperglycemia, could result in ketones, and in the short term result in DKA or Diabetic Ketoacidosis, which (similar to hypoglycemia), could result in a coma and death. In the long term, blood sugars above 150 could result in complications to the eyes, kidneys, heart, brain, and feet. 

So, a caregiver or person with diabetes is always walking this impossible tightrope of insulin, carbs, emotions; trading now for later. There’s plenty of room to imagine, second guess, or worry. 

Here’s thirteen ways of looking at Dexcom Share data, with apologies to Wallace Stevens. The images come from one 24 hour period.

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1. Among too many highs from lows.

2. A lesson about banana muffins,

of a mind to never make these again.

3. Pantomime of pancreas is a

slapstick impossibility.

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4. The number is not one, but

frighteningly close. Mother + child

+ pump + glucose tabs = not pancreas

5. The moment before a gut punch

or just after.

6. The line traced in line,

the indecipherable cause.

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7. What do you imagine?

8. Lucid, inescapable numbers?

9. Illusion of perspective—

flown, offline, out of sight?

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10. Euphony, at a line,

a bird to horizon.

11. Not mostly, but once,

a fear usually pierces.

Even when it’s mistook.

12. The insulin or sugar is moving.

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13. It was all night into morning.

It was no sleep into half-sleep.

Raise a Cupcake: Semisweet Turns 1 Month Old

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Semisweet will be a month old tomorrow, August 17, 2015, and it will be a sweet mile marker, with stories already shared on the The Mighty and Yahoo! Parenting.  Thanks for reading, and thanks to Melia and Connor, who’ve stepped out to share their diagnosis stories. Voices are advocacy. Let’s advocate for a life with T1D one story at a time.

Semisweet is busily planning  giveaways, more diagnosis stories, and a social media campaign for Diabetes Awareness Month this November, so keep reading and sharing your comments and thoughts.

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In the meantime, we’ll celebrate with a cupcake and this helpful formula for frosted deli cakes: weigh the cake in grams and multiple by .55 to find the carbs. Cheers!