I Almost Asked

My daughter's Dexcom G4 sometimes chooses to stop 'sharing' these days, making its receiver the only source of information. When this happens, as it did this week, I try to take a quick peek at the receiver once in a while, just in case we need to talk about tweaks in the basals, carb ratios, correction factors and such.

I looked at the receiver this morning - it was on the table after breakfast - and yesterday morning showed a spike, reaching the top of the graph, and hanging there for an hour or so before coming back down to a reasonable range by noonish.

My initial instinct was to ask something along the lines of, 'What the heck happened yesterday???"

Then I realized three things:

1. I already knew what happened  yesterday. Her grade had a delayed opening because of standardized testing at the high school. She had been out to breakfast with friends and she ate eggs and toast and potatoes- which was a better choice than pancakes - but she clearly either under-guessed on the potatoes or forgot to bolus until too late.

2. The evidence showed that she'd picked up on her mistake, corrected her blood sugar, and gotten herself back in range by lunch. She had solved the problem by herself.

3. Nit-picking is counterproductive. She'd just get defensive if I brought it up, no matter how much I tried to turn the conversation towards 'all's well that ends well.'

So I didn't ask. 

And to Drink?

The waiter at the BYOB restaurant arrived, opened the wine, and started pouring it into glasses that were preset on the table.

One glass, two, three...

"Uh...only two glasses," my husband said, with a pointed glance towards my 16 year old daughter who was our only dining companion.

"Oh- yeah- sorry- I wasn't paying attention... Can I put in any appetizers for your table?"

We ordered something that had caught our eye and then my daughter asked for unsweetened iced tea.

The waiter returned a minute or two later with a glass of clear bubbling liquid. "You said Sprite, right?"

"No...iced tea please."

"Sweet or unsweetened?"

"Unsweetened."

He returned again with a glass of tea. "All we have today is sweet- I hope that's okay."

All three of us shook our heads.

"No? No sugar then?"

"Right."

"I think all I can offer you then is water or seltzer."

Eventually she received a very small glass of plain seltzer.

"I should've asked for a lime or something," she said regretfully.

But in the end she was just happy to have gotten something to drink.

Vacation is For Fun

 

We accomplished all of our 'must-do's' on our visit to Universal Studios Orlando for my daughter's 16th birthday.

 

She used a wand to cast spells around Diagon Alley and Hogsmeade.

 

We took a wild ride through Gringotts bank.

 

After touring Hogwarts' interior, we experienced a high flying adventure over the castle and its environs.

 

We watched the Frog Choir and visited Olivander's Wand Shop.

 

We met the Knight Bus driver and the conductor of the Hogwarts Express.

 

She drank Butterbeer in Diagon Alley. Twice. She bought a bag of candy from Honeydukes in Hogsmeade Village.

 

 

 

 

She carried that bag with her and sampled Sherbet Lemons, Fizzing Whizzbees and Gummy Frogs throughout the day.

 

Her birthday dinner at Margaritaville included a virgin strawberry daiquiri and a complimentary red velvet cake dessert.

 

Did we count the carbohydrates in everything perfectly? No.

 

Did the walking make her blood sugar drop so that Fizzing Whizzbees became not only fun but medicinal? Absolutely.

 

Did she enjoy every moment, sip and morsel and live to tell the tale? Yup.


It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  

Too Much Trouble

 

I wanted a loaf of the homemade bread.

 

Probably the apple crumb, but there was also a blueberry strudel one.

 

I looked them over, picked them up, read about where they were made.

 

They were rather expensive, but they looked amazing.

 

I imagined having a slice with my coffee the next morning, or maybe for dessert that very night with tea.

 

If I bought it, though, I would have to share it.

 

Then I'd have to help figure out how many carbs were in it.

 

I'd have to wonder all night, or all morning, whether I'd guessed right.

 

I might be up giving juice at 2 a.m., or distracted every few minutes by Dexcom alerts all morning.

Chances are the bread would be good enough that my daughter would want another slice.

 

The whole guess/wonder/deal with the outcome process would begin again.

 

We'd already had cider donuts as an afternoon treat. We'd all enjoyed random but delicious treats the night before at a marching band event.

 

I was tired of guessing carbs and dealing with the aftermath.

 

I did not bring home any bread.

 

It was too much trouble.

 

The Boy on the Field Trip

My daughter's 8th grade wasn't the only group visiting the family resort/camp on the day of their field trip.  After telling me that she hadn't talked to her school nurse all day, my daughter shared this contrasting story about a boy from another school:

There was another kid there with diabetes.  I felt so bad for him. I saw him out of the corner of my eye when I sat down for lunch.  He was a table over from us.  I could see him checking his blood sugar.  His nurse was hovering over him with her giant bag of stuff.  It took him a long time to check.  Then they got out a Calorie King book.  You know- not the app but one of those old books like we have on top of the refrigerator? 




Please rest assured we no longer use this alarmingly outdated 2003
COLOR edition to look up restaurant foods or packaged foods.
It's for fruit, grains, baking ingredients and other natural and recipe basics.

I could hear their conversation.  It was painful. They were looking up hamburger buns and macaroni and cheese.  It took them forever.  They came up with 65 first but the nurse decided that was too high (I think she was right) so they rounded down to 55 but weren't sure about that either. I thought about going over there and saying, 'a hamburger bun is usually 21 and half a cup of macaroni is 20-ish.  Enjoy your lunch.'  But I didn't.

I'm not even sure he'd started eating by the time we left.  I felt really bad for him.

We talked about what might have slowed this boy down.  The most likely scenario was that he was newly diagnosed and that this adventure was all new territory for him, diabetes-wise.  Or maybe he didn't eat out much and/or burgers and mac and cheese weren't on his usual menu.  Maybe his was a nervous nurse who needed to be sure they were taking care of his diabetes 'by the book.' 

Whatever the scenario, I understand my daughter's decision not to jump into the conversation. They probably would not have taken advice from another kid, and so her appearance would likely have just further delayed the poor boy's lunch.  She did wish she'd run into him later at one of the activities.

I do wish I'd seen him somewhere else. I would've told him that it'll get easier but I never saw him again.  I hope he didn't spend the rest of the day in the dining hall trying to figure out his lunch carbs.

She'll Have The Usual

Eating out usually involves much angst about how many carbs there are on the plate and about how much of the meal will be consumed.  And therefore about how much insulin should be given before or (lets be realistic here) as the food starts to be eaten.

We've started to play 'guess the carbs' together most times we eat out. My daughter figures out a number first, then I add my input and we discuss.  At several recent restaurant meals she's guessed between 40 and 50 every time.

When it's been my turn to give input, I've eyeballed the plate and said something like, "If you the eat 2 pieces of the battered fish and about 20 of those fries, it's probably around 50." 

Or at the Thai place, "You think you'll eat around half of that bowl of pineapple fried rice?  Maybe about 50."

Or at the diner, "Three blueberry pancakes?  Probably 50."

Fifty.

It's the going rate.  Sometimes we add a few at the end if the fries are irresistible or the pancakes arrive heavily dusted in powdered sugar.  Sometimes we'll ease down into the low 40's if the fried rice is skimpy on the pineapple or if she's not as hungry as usual. 

But lately we've been starting at 50 and adjusting from there.  It's nothing more than a mental math trick, really, but I find looking at the food and asking, 'is this about 50?'  somehow much less stressful than starting from zero and trying to add up the plate.  There is, of course, always a generous margin of error in figuring restaurant carbs.  And this method doesn't work when she orders a big salad for dinner. 

But if we're going to eat out, we need to start somewhere. For now, we've decided to start at 50.

Behind the Scenes of an Average Friday

On Friday, my daughter got up, had breakfast, got dressed, and went to school.  She had a test and a quiz there, ate lunch, and walked the track during gym.  After school she and a few friends stopped at a pizza place and went to the park for an hour before walking back to a friend's house. Once home, she practiced piano, watched t.v., ate dinner, and enjoyed dessert while watching baseball.  She was in bed before 10 and asleep soon there-after.

Sounds like an average 13 year old day, right?  Let's look a little closer:

On Friday, my daughter had her finger poked at 2 a.m. and was woken up to drink juice.  When she got up in the morning, she poked her finger again, chose among a limited selection of high fiber/high protein breakfast choices, and did some math problems.  She programmed her insulin pump and finished making breakfast.  She wanted to wear a skirt she likes, but decided that since a busy afternoon was planned, she'd be happier with her insulin pump tucked in the pocket of shorts so she wouldn't have to worry about it slipping off her waist band. 

She poked her finger after gym at school and was detoured to the nurse's office for juice before heading to take her quiz.  She finished the quiz while the rest of the class started the next lesson.  Before lunch she went back to the nurse to poke her finger again and program her pump using the note her mother put in her lunch saying how many grams of carbohydrate were in there.  A friend came with her to the nurse and they both arrived at lunch later than the other kids.

After school, she poked her finger again before walking to the pizza place. She really wanted to try the garlic knots.  This decision necessitated a phone call and several texts with her mother to discuss how many carbs would be in this snack.  After deciding they were close in size to half a mini bagel each, she programmed her insulin pump and ate.  She and her friends walked the block to the park and after walking around for a while, she poked her finger again.  She needed to eat some glucose tabs before walking to her friend's house.

When she got home, she poked her finger again, gave insulin for a high blood sugar, and drank a large glass of water to counteract the effects of the high.  Between piano practice and t.v. time, her mother used an enormous spring-loaded contraption to insert a sensor under her skin.  She hugged her stuffed rabbit.

She poked her finger again before sitting down for dinner.  After sitting down at the table, she had to get up again to get a measuring cup to make sure she ate the amount of rice she would take insulin for.  She then programmed her insulin pump to deliver a dose for the meal. 

During a commercial in the baseball game, she poked her finger and counted 10 mini nutter-butters into a small bowl. She debated whether she was still hungry and whether she wanted to add some apple slices to dessert and decided it was too much trouble to count and dose for them.  So she put on her pajamas and her insulin pump pack, since pajamas don't have pockets.

At around 11, her finger was poked one more time before her father went to bed, but she didn't wake up.  It had been a busy day...even busier than most people would imagine.

A Break

The circumstances were not great. My daughter and husband ended up traveling without me over Christmas. A local relative needed me close by. They were gone for 3 days and nights during which I spent good quality time including playing many games of Scrabble with the aforementioned relative, caught up on my reading and binge watched HGTV.  It wasn't the worst Christmas I've ever had, nor was it the best.

What was unique about it was going 3 days and nights without diabetes.  This is a luxury my daughter and millions like her may never have.  As a  parent, I've never had it either until now.

The sleep was the highlight.  I can't remember the last time I slept through the night more than 1 night in a row.  Except maybe when I was so sick I couldn't haul myself out of bed anyway.  It's truly amazing what 3 nights of uninterrupted sleep can do for a person.  I felt rested when I opened my eyes.  I felt less scattered. I didn't yawn throughout the day.  I didn't even finish my usual allotment of coffee in the morning.

Perhaps it was a combination of the sleep and the lack of diabetes questions (o.k.- and maybe being home alone), but my concentration improved.  I read for hours without moving from the sofa.  I started and finished a few small projects without jumping between them or leaving them for another day.  I got up, made coffee, ate breakfast, checked the news and left the house without doing a single math problem.

I ate 10 meals without counting a single carbohydrate. I had lunch out without menu negotiations or french fry approximations. I ate a bagel without anyone looking at me with sad puppy dog eyes because she knows they're horrific for her blood sugar and she only indulges about twice a year.  I snacked without making two equal bowls of 12 carbs of crackers to go with the hummus.  I ate at 4 in the afternoon once, and 7:30 at night the next day.

I often wonder where I'd be if diabetes hadn't entered the picture.  This was just a small glimpse of the possibilities.  Evidence shows I'd be well rested.  I'd get more accomplished in a more orderly fashion.  I'd have time to read.  I wouldn't count my food.

I sure missed the kid who has the diabetes though.  I'd give up bagels forever for her.

Armed (and Dangerous?)

The birthday party challenges keep coming this spring.  The latest was an invitation to a celebration at a restaurant serving a buffet brunch.  Mulling it over, I shared the invite with my daughter, offering her an alternative option. If she didn't want to manage the diabetes aspects of a buffet brunch alone, she could join the group after brunch for the pool party which would round out the afternoon.

"I really think I can do it!" was the overwhelmingly self-confident response.

What could I say?

What was the worst that could happen?

How would we ever get to an overnight road trip with friends without first allowing smaller steps like this one?

So she went to a very nice restaurant with beautiful water views to have brunch with a few of her friends and two brave parents.  Armed with her pump, dexcom, cell phone and calorie king app, she was otherwise on her own.

After a two mimosa brunch of my own and a comforting mid-afternoon ice cream stand stop, I picked her up at the pool at 5:45.  She was smiling from ear to ear and recounted in great detail all of the food she'd enjoyed.  She loved the restaurant, being with her friends, and playing volleyball at the pool.

Diabetes-wise? The Dexcom graph included dots on almost every level of its screen.  By 6 it just read 'high,' and stayed that way for over an hour despite two major corrections. The meter's remote showed that over 100 grams of carbs had been bolused for at brunch, and that corrections had been given at 2 and 4 for numbers in the 150-200 range.  She had unplugged the pump twice to swim but not for long since the water was "freezing."

As far as I can tell, she did all that she could, and I made sure she understood that.  A discussion of the desserts she sampled leads me to believe she under-calculated their carbs but since miniature pastries aren't on our regular menu, she was forced to guess.  The real problems didn't start until almost 4 hours after brunch, probably when the fat from the {still unclear to me number of} pieces of bacon she ate met the 105 + brunch carbs and the handful of pretzels she bolused for at the pool.  Truth is, she could easily have hit 400 whether I was with her or not.  Buffets are hard.  Mystery foods are hard.  Add into the mix frigid pool water which tends to spike her, unplugging to swim, and a healthy amount of excitement, and the results are not entirely unexpected.

All we can do is try to learn from the experience.  Mini pastries have more carbs than expected and should be consumed in limited quantities.  Balancing high carb and fatty foods from the buffet with a few lighter options might mitigate disastrous blood sugar results.  Following a heavy meal with an adrenaline-producing dip in ice water while the pump is unplugged shouldn't be a regular occurance.

You may think it was dangerous to send a 12 year old with diabetes to navigate a buffet brunch.  Perhaps a little bit.  But really, on some level, it's dangerous to send a 12 year old with diabetes anywhere.  The best I can do is to arm her with the tools and knowledge she needs to take care of herself, and with confidence. Despite the results, this was definitely a confidence-building experience.  For both of us.

Discretion

By now many of you will have read this Miss Manners question and her response.

In a nutshell, when asked whether it's o.k. for a person with diabetes to test and deliver insulin in public, she said it was not; that both were best relegated to the restroom.

The diabetes community has responded with a torrent of messages to Miss Manners, comments following her column where it is published online, facebook posts and other forms of outcry.

While I certainly do not believe blood sugar testing should be relegated to a restroom, I do believe it should be done surreptitiously. Therefore, the responses to Miss Manners which read along these lines: 'If anyone has a problem with it, they should look away' bothered me a little bit.

Maybe it's where I'm coming from.  My daughter was diagnosed when she was 13 months old.  We've been through every stage of childhood with this disease, surrounded by other kids in the same stage.  We've wanted to avoid freaking out the entire playgroup, or the family at the next table over in the kid-friendly restaurant.  Therefore we've always taken care of the diabetes stuff, to the extent possible, on the QT.  At a restaurant, and in the classroom, she checks her blood sugar without fanfare, in her meter case, in her lap.

She doesn't disguise her actions out of embarrassment.  She does so out of consideration for others and honestly, a little bit, out of self-preservation. We understand that some people are upset by the sight of blood.  We understand some families would prefer not to spend their dinner out answering 47 questions from their 4 year old about what's going on at the neighboring table.  And, as a rule, we don't want to spend our dinner (or party or zoo visit) answering those 47 questions either.  She understands that setting up her testing supplies and displaying her bleeding finger might be a distraction for the child next to her in math class.  It's about balancing her own needs with the concerns of those around her.

My daughter checks her blood whenever and wherever she needs to.  She just tries to do it in a way that isn't obvious. So far, in 11 years of public testing, nobody has stared or made derogatory comments. The only people who seemed to have noticed at all are the people we've met who also have diabetes.

So, gentle reader, here's my response:

The issue is not where you perform your diabetes tasks, it's how considerate you are of those around you while you do so.  If they don't notice what you're doing, they'll have no reason to be concerned.

Dining Out

I love to eat out, but the following scenario will give you an idea why we don't often dine out as a family:

We sit down at the table and the negotiations begin.

"Do you think they have diet root beer?"

"All I see is diet pepsi.  How about iced tea?  Or water?"

"I guess.  Do they have splenda here?"

"I have one in my purse if they don't."

"I can't decide if I want chicken fingers or maybe I'll get a bowl of chowder.  If I get the soup will you share some of your fries with me?"

"If I get fries, I will.  Look...there's a soup and salad thing too."

"But what's in the salad?"

The waitress arrives.  "Can I get you something to drink?"

"Iced tea please...unsweetened."

"Unsweetened...are you sure?"

The table answers in unison:  "Yes."

We return to the previous conversation, "It says a garden salad.  I can't imagine there's anything too weird in it."

"O.k.  I guess I'll get that with the clam chowder."  She begins to chat with the rest of the table or do a children's menu puzzle. I hand over her meter so she can check her blood sugar. The waitress reappears with drinks.

"Have you decided?"

By this time, I've carefully perused the menu options for my daughter.  Depending on the venue, I've managed to choose a wine by the glass or a variety of tea.  There's little chance I've even begun to consider my own food choice.

"I'll go last," I usually say.

"Mom, can I have that splenda?"

"Give me just a minute."  This can be said with varying degrees of kindness.

It comes around to me.  Unless I've been organized enough to preview the menu online before our visit, I order what I usually have there, or the first thing that catches my eye. I get out the splenda and begin considering how many carbs are in the bread which has arrived at the table.

Her salad appears.  It has seven croutons on it.  I bolus for them and the bread.  I take a breath, a sip of my beverage, and a glance around the room, beginning to focus in on any table conversation.  I begin to chat and relax.

Our meal arrives.  "May I taste your chowder?"

With a sigh, "yeah."

Not too many potatoes, but tastes a little starchy.  I estimate the carbs.  "How many fries do you want?"

"I don't know."

"I'll give you ten to start...I need to bolus you for something."

"O.k."

The mental math begins.  If an 8 ounce cup of new england chowder contains x carbs and this dish looks like twelve ounces and it has fewer potatoes than most but tastes thickened by flour or cornstarch and then I add ten fries and the package of oyster crackers, I'll bolus for y carbs for now and if she eats it all or eats some of someone else's dinner, I'll add z carbs later.  I plug the numbers into the meter remote and press 'ok.'

The waitress appears.  "How is everything?"

I've eaten nothing yet, but smile and nod anyway since my plate looks like it contains what I remember ordering.

"I think that's what he told us, isn't it?" My husband is pulling me back into a conversation I haven't been following.  I grab a now-only-warmish fry, and another sip of my drink and try to catch up.  It's time to enjoy my dinner and relax for a bit. 

An Unlikely Outcome

After a long day of cooking, cleaning and yard work in preparation for hosting Easter dinner, we were grateful to adjourn to a local family-friendly Irish pub for dinner.  My daughter knew what she wanted before we walked in the doors.  'Remember how good their fish and chips is?  I'm getting that.' 

I was pretty sure she hadn't come close to finishing the plate the last time we went, so I delivered insulin for 40 carbs to start and waited to see what she would eat.  My estimate was 12 per fillet and 2 per fry with a few carbs thrown in for good measure.  I figured the 40g to be about half her plate, and knew giving some of the insulin a head start could only help the cause later on.

I guess the combination of cleaning her room, helping me cook, and softball batting practice built up quite an appetite.  Before I knew it her plate was almost clean. 

I bolused for another 40 carbs despite her sharing 2 or 3 of her last fries and a small piece of fish. 

It's extremely rare that she eats more than 50 carbs per meal.  Consuming 80 is almost unheard of.  When there is fat involved, I usually actively discourage it.  No matter which 'tricks' we try to contain it, her blood sugar inevitably objects.  In the back of my mind, I worried what those blood sugar numbers would look like later, but after a long day I was just happy to sit and relax over my own meal and let her enjoy hers.

As she set out her Easter basket to be filled, her post-dinner blood sugar was 234.  I figured that to be only the beginning.  Yet that correction brought her quickly down to 175 an hour later.  By 2 a.m., the meter read 133.  At 7 a.m.?  93.

This story contains no advice.  My daughter consumed a significant amount of fried food while I haphazardly guessed the carbohydrate content.  I used no temp basals, combo boluses or other diabetes tricks of the trade to yield this result.   I can almost guarantee you that next time she orders the same entree the blood sugar results will be wildly different.

All I can figure is that in recognition of our hard work and the occasion of Easter weekend, the diabetes gods chose to smile on us Saturday night.  On a day when you most need it, I hope they are similarly gracious to you.