As of today, he’s been in Kindergarten for 100 days.
Sure it’s a 100 days of school, but the 100 test strips are only 10 days of type 1 diabetes care. So that means…
100 finger pokes
$140 dollars (without health insurance) of test strips
4 site changes
1 continuous glucose monitor change
0 nights of uninterrupted sleep
333 highest blood glucose
47 lowest blood glucose
Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.
As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.
Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.
For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.
A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.
Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?
Me: Yeah, I guess so. Is that something you really want?
Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?
Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.
(long silence, Henry regards the back of the book)
Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?
Me: Well, some people say yes, and some people say no.
Henry: So, is diabetes a disease?
Me: I think you’re the person who gets to decide that. So, what do you think?
Henry: I think diabetes is just diabetes.
“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.
“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”
He looked out of the window, his arm held straight, but at an odd angle by its IV splint.
“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.
My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.
But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.
Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.
This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.
I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.
Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.
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.
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.
Tomorrow it could dip into the 30s. I’ve been watching the weather for a couple of weeks, expecting the first plunge into freezing, so I switched out the kids’ clothes from summer to winter. And like usual, I discovered they outgrew most everything from last year, which is how I found myself in Target this weekend, shopping for boys’ pants by shoving my hands down the front pockets.
Hands deep in a pair of cargo pants, I became acutely aware of side-eye from a fellow parent and shopper. Along with side-eye, color and style are the least of my concerns when it comes to shopping for clothes for my six-year-old son with type 1 diabetes. Instead, I search for deep pockets that will hold his insulin pump and a flexible waistband that won’t pull a site out from his backside.
So there I was, innocently shopping for pants, when I found myself in a d-mom (mother to a person with diabetes) moment. Honestly, these d-mom moments are pretty routine, appearing like little blips on a radar; some are even funny, but others break my heart all over again.
Here are a few cumulative and recent d-mom moments.
When my son is grumpy, mean, or angry for no reason, I automatically check is blood sugar before I do anything else.
I can count the times I’ve slept through the night the last two and a half years on one hand.
I accidentally sent a text intended for my husband to the school nurse.
When my son told me this story the other night, I felt like we’re handing this diabetes thing pretty all right: “Mama, when I’m on American Ninja Warrior, my story is going to be this. At first I was little, but then I got bigger. I ate food that was good for me, and I didn’t get afraid of as many things anymore. I have diabetes, and at first I didn’t like the pokes. The sensor hurts more than the site, but it’s all O.K.”
I say my son is high in public.
I have a mental rolodex of carbs memorized. This makes me very unpopular at parties.
I’m less patient with willful ignorance than I use to be, but I’m more patient when it comes to failure.
Today my son was on the low side, and he took some pop corn out of the bag I was holding (and eating from). It occurred to me that we’ve never really shared a snack like that. Most of his food is weighed or measured, not eaten out of a package that contains multiple servings.
Every day diabetes takes up time, sometimes literal hours are sucked away battling new insurance restrictions or stubborn blood sugars and ketones, but paradoxically, it’s also forced me to exist in a tiny moment, like after I’ve treated a really low blood sugar. Henry and I lie on the couch, waiting to recheck his BG, and when he feels better, he tells me about this new movie he’s writing. It’s called “War of the Stars,” (I suspect some copyright infringement), and there’s these two characters called Citeloneum, he’s the goody guy, and Vitloneum, he’s the bad guy. Citeloneum has a site because he has diabetes.
Hell hath no fury like a sleep-deprived, insurance battling, carb-guesstimating parent of a T1D kid. So when this guy posts this sign in his aptly named restaurant, Mike’s Pig Pen, parents get even and educate.
After the Facebook page for Mike’s Pig Pen was taken down, another popped up.
Local news outlets were contacted about covering the story.
Lots of one star reviews on Yelp! appeared.
The phone number for Mike’s Pig Pen appeared online, with the suggestion that the “squeal like a pig” scene from Deliverance be played when someone answered.
Mike’s expired domain name, http://www.mikespigpen.com, was purchased and now it reroutes to the American Diabetes Association.
The DOC (Diabetes Online Community) reacted and responded.
Locals defended him. People within the Type 1 community suggested that the outrage was too extreme.
Mike apologized.
Dust-ups like this happen when diabetes (type 1 and type 2) enters the picture. Only the players change: it can involve Cross-Fit, American Girl Dolls, and the list will continue.
I’m not sure that someone who openly practices discrimination (and thinks that diabetes is spread through blood contact) ever gets educated, whether it’s Mike, the customer who complained, the local newspaper editor who says that attacking Mike over the sign “is equivalent to bombing Main Street,” or the 100’s of people on social media who express outrage over having their meal ruined because they have to see a needle.
What I do know is that the sign, and all those who agree with its sentiments, that think people with a disability should be removed from public view, are a reminder that the fight is real. There’s a reason for advocacy and education.
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.
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.
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.
photo source: http://krisfreeman.net/
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.
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.
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.
WTF chia seeds? We had something special, then you had to go and ruin it with an overly sweet date.
Right before the new year, my Instagram and Facebook blew up with images of young girls peering longingly into American Girl Store windows at this.
a diabetes care kit from American Girl
Initially, this was a feel-good story. The American Girl company responded to a petition created by Anja Busse (11 when she started the campaign two years ago) for a “Diabetic American Girl.” There’s a Facebook page to support the idea and the petition garnered over 4,000 signatures. And at the start of 2016, American Girl responded by releasing its diabetes care kit.
How could this story go wrong? A young girl became an advocate and a company responded with an ethical decision that could help potentially thousands of children feel a little bit better about living with a chronic disease. But then the ignorant trolls.
This is another example of someone in the fitness community not understanding that type 1 and type 2 are different diseases. To Vinnie Tortorich’s credit, he’s now educating himself on the fact that type 1 is an autoimmune disease and is unrelated to lifestyle and diet, unlike the CEO of CrossFit.
Kids who live with type 1 diabetes encounter many hardships, and aggressive ignorance by educated adults is harmful. Unfortunately, the only way to correct a lack of knowledge is to speak up during a diabetes dust-up.
The American Girl diabetes care kit is a victory. If a major corporation like Mattel (which American Girl is a subsidiary of), can get diabetes type 1 and 2 right, then so should CrossFit, the CDC, and anyone who shares a public opinion that expresses shame and blame over understanding.
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