Hard Questions on World Diabetes Day, and Everyday

November 14th is World Diabetes Day (WDD), a day created by the International Diabetes Federation to bring awareness to the growing concerns surrounding type 1 and type 2 diabetes. Last year, I recognized WWD with the 2015 Type 1 Diabetes Index.  This year, some of those numbers have grown.

 

My son is in his second week of participating in a sport, so I’m new to managing blood sugars during organized physical activities. During his first week of practice, I sat watching the CGM (constant glucose monitor) as it read 120 with an arrow straight down, then the next read out, five minutes later, was 90 with two arrows down. At practice this week, I disconnected his pump, hoping to avoid the rapid drop.

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As I held his makeshift pancreas in my hand, I looked up and saw grandparents taking short videos, parents cheering kids on, siblings sitting through practice, drinking from juice boxes, eating unmeasured food. In one hand was my son’s insulin pump, the other his CGM receiver, and with all my willpower, telepathically, I was willing his blood sugar not to drop any lower, but it was 98 with an arrow down. As I rushed downstairs to give him a glucose tab, it struck me, once again, how different my experience of the ordinary often is, usually because I’m thinking about some difficult diabetes question or trying to do diabetes math, which is impossible, by the way.

For World Diabetes Day 2016, I’m sharing a few of the typical questions I have throughout any given day.

If he’s eating 45 carbs for dinner, with lots of protein, but not much fat, is 1.75 units of insulin enough to cover the meal?

Should I wait 5 more minutes to see if one glucose tab is enough to bring his blood sugar up?

Will the school nurse think I’m overprotective if I call? I just dropped him off at school with 2 units of insulin on board, a glucose tab in his mouth, and he’s 79 with an arrow down. Yes, call. Are you crazy? Why would you not call and tell her this?

Did I give him enough insulin?

Did I give him too much insulin?

Should I explain to the man who just picked up his kid and moved him to the other side of the pool after seeing the medical devices on my son that my son is not dangerous or contagious? Should I tell him it’s OK to ask questions, but not to stare and ostracize?

OK, the packaged pasta says 2/3 cup of dry pasta is 44 carbs. Hmmm. How is dry pasta a useful nutrition fact? Do people actually eat dried pasta?

Why do I feel guilty and lucky at the same time because my son has access to insulin and others don’t?

When I walk in his bedroom this morning, will he be conscious?

Why does he eat the exact breakfast every morning and sometimes he’s 120 an hour after and other times he’s over 300? The.exact.same.breakfast.

What if Henry has kids and they get diabetes?

As I look at his CGM many hours after eating out, I wonder just what exactly is in restaurant food.

When I’m talking to a representative  from my insurance company after they’ve limited my son’s test strips and declared his Dexcom CGM out of network, and I ask this person how much my son’s life is worth, do I really expect an answer? Do I really want them to answer this question?

How will my son handle the burden of type 1 diabetes as a teenager?

Is his sister peeing more than normal? Am I?

After asking for the nutrition information at a national chain of ice cream parlors, do I push it and try to explain for a third time that I’m asking for carbohydrates, which are a very different thing from calories?

When Henry is anxious about a site change, he says, “I don’t want to have diabetes. Why do I have diabetes?” Is it enough to say, “I don’t want you to have diabetes either,” and “I don’t know.”

Those two pieces of pizza are 70 carbs. Right?

After learning of someone else in my local community is diagnosed with T1D, I wonder why the CDC is not tracking the incidence of type 1.

How will Henry respond when some of his classmates stop being curious and start being hurtful?

Sleeping in two and three hour intervals is enough, right?


November is diabetes awareness month. Please consider signing this petition that asks the CDC to start tracking the occurrence of T1D or making a donation to a diabetes organization.

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Teacher, Caregiver, Nurse, Friend, and Advocate

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who will share their experiences of learning about Type 1 and managing it in a preschool classroom. “Teacher, Caregiver, Nurse, Friend, and Advocate” is by Alexis Johansen.


Diabetes. A word you rarely hear when going through college as an education major. You discuss behavior and disability interventions, teaching strategies, classroom management, and anything else that will prepare you to become a successful classroom teacher.

However, I heard “diabetes” entering my second year of teaching. My co-teacher and I were told we were going to have a child who was recently diagnosed with Type 1 Diabetes in our classroom. I cannot speak for my co-teacher, but my stomach felt very uneasy. I was worried to take on such a huge role with something I knew very little about. Many thoughts ran through my head. How do I care for a child with diabetes? Will I know what I am doing? How are we supposed to keep him safe? And most of all, how do I give him 100% of my care when I have 19 other 4 and 5 year-olds who need the same?

Unlike many public primary and secondary schools, preschools are not usually staffed with nurses, so my co-teacher and I were going to take on the nurse roll. We were in charge of keeping our little friend safe, and really when it comes down to it, alive. His parents put their trust in us to care for their child, while they themselves were still learning about caring for Type 1 Diabetes.

Not only did we have to take on this “nurse” and care giver roll, but we also had to learn to balance diabetes and the rest of the class including Henry. We were still the teachers, we were still Henry’s teachers.

Fast forward two years later, as I near the end of my time with my sweet little Henry, and all the care is now routine. But that wasn’t always the case. I think back to the first couple weeks of school, when we were learning and reading about Type 1 Diabetes. For instance, a typical day for all involved includes the following (keep in mind there is no such thing as a typical day in the diabetes world🙂

  • Between 5-10 finger pricks a day
  • Delivering insulin every day and multiple times a day
  • Counting carbs for lunch, snack, or a special cooking activity
  • Doing a pre-bolus (insuin given before a meal) for lunch along with a combo bolus (insulin given over a duration for high carb and fat foods like pizza)
  • Giving rescue carbs (glucose tabs or juice box for a low at any given point)
  • Correcting a high with an EZBG (more insulin) multiple times during the day
  • Communication with parents via group text, emails, phone calls when needed
  • Countless checks on his monitor, our personal cell phones, or his iPod

I’d say after two years, we have this balancing act figured out pretty well. There are still times where I find myself explaining to another 5 year old what a glucose tab tastes like (a gigantic smartie) or why Henry gets to have a juice box or cheese stick at random times during the day. This is all part of the balancing act. As a class we all come together to accept diabetes as part of OUR norm. This is just part of our day. The kids see us do blood checks, give rescue carbs, and give more attention to Henry at some parts of the day. But do you know what? They don’t think twice about it. They may ask a question or two, but curiosity is what makes our children learn and grow.

As I sit here typing this post, constantly checking my phone to see what his numbers are during rest time, ready to text my staff at any point, it makes realize that I have come to many conclusions and have my own thoughts about diabetes.

First of all, I love FREE FOODS (a no carb food)! The best food there is when you don’t have count carbs, knowing Henry loves them as well. To this day, my heart will always skip a little beat when I see double arrows down on his CGM (continuos glucose monitor). Pizza day is a bittersweet because I know there will always be a high and then there will most likely be a low. Exit signs, pointing with their arrows, will always remind me of Henry and his CGM (a devise used to read his blood glucose with arrows showing which direction his blood sugar is headed). Lastly, I thought Type 1 Diabetes was going to diminish my ability to teach the class, but really it made me the best teacher, caregiver, nurse, friend, and advocate that I could possibly be.

I will not look back and remember the scary lows or the difficult math (not my strong point) when it comes to figuring out carbs in a given meal or treat. I will not look back on the extra time it took to try and fully understand Type 1 Diabetes. I WILL look back and remember that little boy who took every finger prick like a champ, who made lows not so scary, who gave me the giggles when I was stressed out, who was so excited to see his blood glucose numbers (when sometimes I was dreading it), who, in all reality, gave me a whole new outlook on life. No, I will not remember Henry as the child we had with Type 1 Diabetes. I will simply just remember him as my sweet little Henry. A strong little boy who didn’t let diabetes define who he is.

exit signAlexis Johansen teaches in the 4 and 5 year old room at the University of Northern Iowa Child Development Center with her Bachelors in Early Childhood Education. She recently just finished up her third year teaching. Alexis lives in Cedar Falls, Iowa with her newly married husband and her adorable dog that loves to cuddle! When she isn’t at school with her kiddos, she enjoys reading, running, and being crafty at home.

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Lexie and Henry 

When Type 1 Knocks on Preschool’s Door

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.


It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

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Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

“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.

Preschool Graduation: All the Feels

The preschool our son attends is wonderful. His primary teachers have Dexcom Share on their phones, and we usually text several times a day about carbs or insulin dosing. Here’s a text we got a few days ago.

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Yes, his teacher picked out a dried blueberry, raisin, cherry, craisin, and part of an apricot, weighed them, took a picture, sent a text, waited for an answer, and delivered insulin to our kid. In a preschool classroom. This is to say nothing of the Bakery Unit they had last month, which was also handled with care and attention.

This morning, Henry graduated from preschool. I have all the normal parent feelings of time passing too quickly, pride, and fear as my child grows bigger into a much bigger world. But, I also have caregiver-parent feelings, which are messier, more full of fear and dread. I try not to let those caregiver-parent feelings invade these happy milestone moments, like leaving preschool and starting kindergarten. However, milestone moments are inherently reflective. So, the thoughts of my son’s short, but complicated history, coupled with a future inextricably linked to a chronic disease, sometimes share space with joy. If I’m not saying this clearly, Pixar did: think of Sadness and Joy from Inside Out.

He’s five and has lived a life of more medical intervention than me, and most other people my age. His medical history (not all related to diabetes) is a long list of specialists: pediatric neurologist, neonatologist, ENT, immunologist, pediatric endocrinologist, infectious disease specialist, E.R. physicians, multiple anesthesiologists, and several primary care physicians. I stood beside his isolette in the NICU for weeks after his birth and climbed into five separate hospital beds with him over the past five years, and I know I’ll need to be prepared to climb in again. 

I’ve seen my son, and he’s seen me, in really scary basins and valleys, so we’ve learned the value of looking at something else: a tenacious mountain goat climbing a rock face, a cool cat handing a diploma to a kid who is going to rock kindergarten.

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Henry with his preschool teachers, a preschool diploma, and TC!

A New Haircut

I was that mom who waited way too long to cut her son’s curly locks. In fact, this photo, taken when Henry was 18 months old, was what shamed me into getting his fist haircut.

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Henry, in need of his first haircut, two years and two days before his T1D diagnosis.

You see it right? That not-so-cute blonde Bozo the Clown hairstyle.

So we got his hair cut. No big drama. He ate a sucker while the stylist cut his hair. She put a few curls in an envelope for me to keep. About every eight weeks we’d repeat the same steps: sucker, haircut, not much drama. Then Henry was diagnosed with type 1 diabetes.

Immediately after his T1D diagnosis it dawned on me that some things, like eating in a restaurant, are possible, but more difficult. But other times, suddenly, we’d be in a situation where I didn’t think T1D would be an issue (like getting a haircut), and it was.

At Henry’s first haircut after diagnosis, he wanted a sucker before climbing in the chair. I scrambled for a piece of sugar-free gum to give Henry while gesturing to the stylist not to give Henry a sucker. But Henry was insistent, he wanted a sucker. I said not now, maybe later. The stylist told me that the sucker was just “a little one” and he could “pick his flavor.” I told her Henry has type 1 diabetes and he probably shouldn’t have a sucker right now, but we’d take it for later.

The short of it is that Henry left with two balloons, several stickers, and a rapidly rising blood sugar well over 200. I left with a lot of guilt. This would be the first of many times I’d have to refuse or accept a sweet treat offered at the bank or post office. There’s no easy way to casually disclose to a well-meaning stranger that your child has a chronic condition, so the sugar treat is not a good idea in the moment. And then there’s the kid, the one with the chronic condition, listening to everything that’s said.

Now, I run those errands before I pick Henry up at preschool so I don’t have to explain anything to anyone.

These days, I let Henry’s hair get a little longer than it should (but not Bozo style) before we get it cut. Last week, I took Henry for a haircut. After the haircut, the stylist asked Henry if he’d like a sucker. I didn’t say anything. He picked out a mystery flavor for himself, and then asked if he could pick one for his sister.

As we were walking out, he handed me both suckers and said, “Give this blue one to Ava, and save mine for me when I’m low.”

Crossing a parking lot with my five-year-old, who’d just given up his treat for a future medical emergency, I felt pride and a familiar sadness. All the sudden, I realized not only will T1D always be with him, but it is shaping who he is.

2nd Diaversary: 731 Days of Living with T1D

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 

 

 

Names Are Hard

The ADA’s 2016 Standards of Medical Care in Diabetes recently shifted its language to match the ADA’s position that diabetes does not define people, “the word ‘diabetic’ will no longer be used when referring to individuals with diabetes in the ‘Standards of Medical Care in Diabetes.’ The ADA will continue to use the term ‘diabetic’ as an adjective for complications related to diabetes (e.g., diabetic retinopathy) (54.)'” This means that “diabetes” is now used to refer to the person who has it, instead of “diabetic;” for example, “My sister has diabetes,” not, “my sister is a diabetic.”

The name shift seems simple, but it’s packed with emotions, implications, and for some, even anger. I wrote a piece, Diabetic v. Diabetes, shortly after the ADA published the 2016 Standards of Medical Care in Diabetes, which explained the name change. When I linked to the article on Semisweet’s Facebook page, within seconds, the first comment was, “This is stupid.” Beyond Type 1 featured the article, and it garnered some healthy debate on the Beyond Type 1 Facebook page as well.

Some people see diabetic v. diabetes as splitting hairs or unnecessary political correctness. When I encounter the people who prefer to be called “diabetic,” or at least voice a strong and angry opinion against those asking to be called, “person with diabetes,” I respect their right to be called “diabetic.” In general, it seems these people have lived with the disease for many years— years when the battle was greater because technology wasn’t as advanced and understanding was scarer. Usually, these people are adults; however, children are more sensitive to language, labels, and their implications. In fact, we’re all probably not too far removed from that hateful comment or name someone hurled at us on the playground.

I’m the parent of someone who has diabetes. I couldn’t protect my son from getting diabetes, but I can try to protect him from the implications of being called “a diabetic.” He’s not even in kindergarten yet, and already kids his age have told him he, “can’t eat a certain food because [he’s] diabetic.” He’s been told he can’t play a certain sport because he’s “diabetic.” A neighbor kid didn’t want him in her yard because he’s “diabetic.” He’s brought home treats, like half a muffin or cupcake, from school because he didn’t eat it when the other kids did. We don’t make certain foods off limits, but he’s heard kids his own age tell him what he can’t eat. I wonder what he’s thinking as he watches his classmates eat their treats. He can eat that cupcake or cookie because he has diabetes, but he’s inherited the stereotype that he can’t, because he’s “a diabetic.”

The governing associations like American Diabetes Association are changing their language, and I think this is because our perception and understanding of diabetes is changing. To be “a diabetic” was a certain death sentence 94 years ago. After insulin, to be “a diabetic” meant doctors predicted vastly shorter lifespans; fear and misunderstanding from teachers, relatives, and the larger medical community impacted people’s lives negatively. Women with T1D were told they could not and should not have children (case in point, Steel Magnolias).

In this era of better treatment, people with diabetes can live normal lifespans with fewer complications. As more and more people live longer and better with T1D, we’re starting to understand that living with a chronic disease or condition, like diabetes, has impacts on our emotional health, romantic relationships, and mental health. Having diabetes, means we can talk about this, and if we talk about being “diabetic” versus living with diabetes, there’s a simple paradigm shift at work: a limited life vs. a limitless life.

In images, the paradigm shift looks like this.

Below is the picture of a child who’s just been given a shot of insulin for the first time in 1922, and he’s starting to wake up from DKA. He was in a Canadian hospital with a ward for diabetic children. Just weeks before, his parents sat at his literal death bed.

library and archives

photo source: Library and Archives Canada

He’s a picture of 4 time Olympian, Kris Freeman. He happens to have Type 1. In the photo, he’s training for another race and is wearing an insulin pump, Omnipod, on his arm.

In both pictures, we can see the life that insulin makes possible, and what’s harder to discern, but still visible, are the implications of being diabetic versus having diabetes.

Being diabetic once meant limitations, and yes, having diabetes requires my son to make sacrifices and take extra steps, but being a person with diabetes puts the focus on personhood. Thankfully, we’re living in an age when having diabetes means it’s a conversation about what we can do instead of what we can’t, and that’s ultimately the difference between diabetes and diabetic.

 

A Week In Review: Diabetes’ First Week at Preschool

It’s Sunday night. With only one work and school week behind us, the next week and the one after that loom. Last week was mixed with some new ratios (adjusting how much insulin is given for a set amount of carbs), a couple of lows, technology failures, and an embarrassing encounter with my neighbor. Here are some of the highlights mixed with a few tales of low.

Monday

Having a continuous blood glucose monitor (CGM) is like having a porthole into this strange metabolic dance between insulin, carbs, exercise, and stress. After Henry’s first day back at preschool it wasn’t his sweat soaked hair or his teachers remarking how much more “outgoing” he is this year, as it was the CGM data that told me he was a wild man. He was really, really glad to be back at school, exerting lots of energy, which lowered his blood sugar. For dinner he ate a cup and a half of pasta and was double arrows down with a reading of 135 an hour after dinner. By blood he was 80. His blood glucose never rose above 160 the entire night. If only first days back could be bottled and used with insulin to help control high blood sugars.

Tuesday

My husband teaches an 8am class, so on Tuesdays and Thursdays I get the kids up and off to school on my own. I woke to Henry’s pump beeping because the battery was dying. Here’s the short of it: a battery change requires priming, which means a new site. It still takes two adults to help with Henry’s site changes, so I cheated and changed the battery with a new cartridge. I did this in the dark, not wanting to wake up Henry, and in this great plan, I didn’t realize I’d put the battery in backwards. Now the battery cap would not come off and the pump wouldn’t turn on. No matter how hard I tried, I could not unscrew the cap. I began looking out my backdoor, wondering which neighbor’s door I could knock on before 8am and ask for “the man of the house” to help unscrew the battery cap from an insulin pump. Thankfully, I caught a neighbor on his way to work. With my wet hair still in a towel and in bare feet, I set feminism back a few years, but Henry got insulin and everyone got to work and school on time.

Wednesday

I know only about 10-20% of people with type 1 diabetes use a continuous glucose monitor (CGM), but based on the hold time with Dexcom, I’d say market penetration is closer to 90%.

Thursday

At preschool drop off Henry was 111 with double arrows down on the CGM, but he was really 60 by blood. He still had over a unit of insulin on board. I stayed during group time to correct the hypo. One juice box and 4 glucose tabs later his numbers were moving in the right direction. This was when I realized preschool has ushered in a new activity level, so while sitting criss-cross applesauce during story time, I increased the insulin to carb ratio. The further those dots (a glucose reading sent out every five minutes) are from each other, the faster things are happening.

arrows on CGM

Friday

There was a light spirit in the air; as a family, we were closing the first week and moving toward the weekend. Over breakfast and out of the blue Henry asked, “Will I always have diabetes?” Henry’s asked this question before, and we’ve always answered in the affirmative. Matt, Henry’s father, took a deep breath and said, “Yes.” 

This sat with all of us for a moment. Then Matt added, “But people are working really hard to create new things to make diabetes easier. It will get easier.”

It will get easier. We’re ready for the second week.

T1D Helicopter Parents Unite!

I used to teach English at a distinguished college preparatory high school in Los Angeles. Occasionally, the faculty would bemoan the “helicopter parent” after an exhausting and ghastly encounter. For example, a father told me his son, a sophomore in my composition class, could not complete the homework because the son was sad his pet goldfish died. Another mother drove her son’s homework to school after she completed it for him. At my classroom door, in front of his class, she explained he was too excited to do his homework last night after he found out he made the freshman football team.

Even helicopter parents understand that if they always tie their child’s shoe, the child will never learn to tie a shoe. But parenting is a complicated paradox: as a parent, my job is to make myself obsolete. The whole business of parenting is weaning. The process of weaning and independence is  easy to see with young children, when desire precedes ability, and they want to pour the milk or pick out their own clothes. After many days and years of scaffolding independence the hope is my children will get an education and job, be able manage money, make decisions to safeguard their health, find people that make them happy, and join communities.

That’s how the whole plan is supposed to proceed, but the plan requires revision when a chronic disease enters the scenario. Our four year old has type 1 diabetes. Now our job is to aim for all the aforementioned things, but also to daily administer a drug, insulin, which preserves his life, but could take it. In a few years, we’ll have to teach him how to deliver this same drug. We have to teach him how to wear medical equipment (Animas pump and Dexcom) on his body 24 hours a day and how to take care of this equipment. We’ll have to teach him how to heal and advocate for himself when he encounters unkind or ignorant people.

School is starting, so a parade of parents are meeting with educators and administrators about 504 plans, and educating staff on caring for a student with T1D. In her article, “What It’s Really Like To Raise A Child With Diabetes” on The Huffington Post, Lisa Gastaldo explains some of the fears and realities of diabetes care from a parent’s perspective, as well as her history of working well with schools and doctors. I think it’s a great read to pass along to teachers and family members who may not recognize the trials of living with diabetes.

Even people who are in the diabetes community debate when and what a parent’s role in T1D care should be. As CGM in the Cloud and Nightscout emerged and engaged in important debate with Dexcom over moving to an FDA approved platform that enabled sharing of CGM data, people in the diabetes care industry predicted that the helicopter parents of T1D children would be distracted and consumed by the data. We’ve had Dexcom share since June, and have found the opposite to be true. Rather than wondering what our son’s blood glucose is, and texting or calling to find out, we look at the number and move on. We’ve been able to leave our son with family members for the first time since diagnosis. Just this week, both of Henry’s preschool teachers downloaded the app on their phones and marveled at how this continuos stream of information would make monitoring and care easier in the classroom.

Dexcom Share data on follower phone

Dexcom Share data on follower phone

My job is primarily to be a parent, but as I watch my four year old son struggle to put on a pair of pants while holding an insulin pump, I realize my other more arduous job is to be a parent to a person with type 1 diabetes. How long do I watch him try to untangle the tubing from his pants before I step in? To stall, I play a trick on myself and say this is like any other challenge every other kid faces, right? I tell myself only the scenario is different, but then Henry looks at me in frustration. He asks for help, and I can see on his face that he knows this struggle is different, more intricate and undue. There’s no need to say anything in this moment that requires action. Instead, we sit down on the floor, where he can place his pump, and find a new way to put on pants.