Between Avalanches

Maybe I was experiencing caregiver burnout and didn’t recognize it as such. I kept doing everything I was supposed to do: count carbs, give insulin, check for ketones. Since the election, I’ve been calling and writing my representatives in an effort to persuade lawmakers that people with pre-existing conditions need assured access to health care. I called while waiting at urgent care. I called before breakfast. I started to believe it didn’t matter how many times I called, but I called.

I tried to make peace with the fact that many of the people I love support the current administration that is creating policy that hurts my son.

I did what the insulin pump told me, and sometimes his blood sugars wouldn’t go below 200. I rage bolused.

I raised money for diabetes research. I tried to prioritize moments where he could be a kid instead of a kid with diabetes.

There were trips to the E.R. for minor diabetes related things, battles with insurance, problems with pump supplies, stubborn blood sugars, anxiety at site changes, surprise bills that arrived six months after date of service—all the “normal” things related to living with diabetes.

But there was also Friends for Life, an amazing conference in Orlando that focuses on type 1 diabetes. All the food is carb-counted, and it’s the only week of the year where diabetes feels “normal.”

While at the conference, we heard Dr. Ponder’s Sugar Surfing talk, and when we applied his principles, Henry was in range for 99% of the day. It was the best blood sugar day we’d had in the past 90 days.

Yesterday, while the Senate voted to continue the process of repealing or repealing and replacing healthcare, we had our Endo day. If you don’t speak diabetes, Endo day is when you meet with your endocrinologist, and in addition to the usual conversations of insulin to carb ratios, insulin sensitivity factor (more math than I had in Algebra I), there is a test, the A1C test, which is used as a general measure for how well you’re managing your diabetes.

It’s probably against the DOC (diabetes online community) to admit that I’m sometimes excited for this test, because I’ve always liked tests. I find them an interesting metric. So when I’ve been slaying carb-counting, micro-dosing insulin, not sleeping through the night, and setting a timer for a real pre-bolus, I’m excited for the A1C.

Not this time. The Dexcom alarm would predictably go off over 220, and my husband and I would look at each other, willing the other to act first, to slog upstairs and deliver what felt like the hundredth dose of insulin that day. His high blood sugars made me feel helpless, and because I don’t like to feel helpless, it was easier to turn that feeling into apathy. I slept through high alarms. When we went out to eat, I didn’t try to hide the option of french fries on the kids’ menus. I was certain his A1C would be much higher, reflecting our summer vacation mode and my burnout.

Instead, it was his lowest A1C yet, (and not because of lows). The A1C reflected our recent change to sugar surfing, “working the line,” as Dr. Ponder says. It reflected the fact that I’m no longer afraid to call a restaurant meal 100 carbs, to use the fancy pump settings like temp basal and combo bolus. To rage bolus, just a little.

Our endo stayed and talked with us half an hour after the office closed. Guess what we didn’t talk about? His A1C. As we were leaving, the janitors were gathering trash from the waiting room and neatly stacking the magazines. The lights over reception were dark.

On the hour and half drive home, I listened to NPR report on the Senate vote. I thought of all the things an A1C doesn’t reflect: the anxiety I feel about whether my son will be denied coverage, how he will afford his insulin when he’s older, if he will be forced into a career he doesn’t want because of private insurance—the privilege of that thought.

I didn’t know it yet, but the Endo had made two changes to his basal, and Henry’s blood sugar never dipped low nor rose above 115 all night. I only had to wake up and glance at my phone for the numbers. It was almost like sleeping through the night. Almost.

Perspective

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

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

100 finger pokes

$140 dollars (without health insurance) of test strips

4 site changes

1 continuous glucose monitor change

0 nights of uninterrupted sleep

333 highest blood glucose

47 lowest blood glucose

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.

Confessions of a D-Mom

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

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

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

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

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

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

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

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

I say my son is high in public.

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

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

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

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

 

 

 

 

A Time Diabetes Bossed Us

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Q. How Can Doll Toys Make People Angry? A. Add Diabetes.

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.

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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.

screenshot_2016-01-03-08-32-51This 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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‘Tis the Cookie Season

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Team Pancreas: Caregivers Matt & Rachel

How would you describe your child’s condition?

Matt: Henry has type 1 diabetes. This means that his entire life is centered around the fact that his body does not produce the insulin he needs to process glucose, so we check his blood sugar about ten times a day by poking a small needle into his finger and adding that drop of blood onto a meter that tells us what his BG (blood glucose) is. Depending on what the number is, we give him insulin, sugar, or wait. This means that we deal with low blood sugars, which are potentially, immediately, fatal; high blood sugars, which can have drastic, long-term consequences for his life; or “normal” blood sugars, which help keep him healthy. We get up every two hours every night to help maintain his blood glucose. Two weeks ago, Henry looked at me and said, “Diabetes is a hard life.” I agree.

Rachel: Our son, Henry, has an autoimmune disease, type 1 diabetes. Something triggered his beta cells to stop producing insulin, so he must take subcutaneous insulin for the rest of his life, test his blood glucose 8-12 times a day and always account for the carbs he eats with insulin. There’s never a break from type 1 diabetes, because the person with diabetes or the person’s caregiver/s is trying to replicate a job the pancreas once did.

What care for your child is required, and how do you and your partner divide this care?

Matt: We make sure that he gets enough insulin to cover the carbs (sugars) he eats so that his blood glucose does not get too high and cause damage to his organ systems. We also make sure that his BG does not drop to a low level that could result in seizure or death. We count all of the carbs he eats and program his (miraculous) insulin pump to keep him in balance. We also change his pump site every two to three days, as well as his constant glucose monitor (CGM), another amazing device that keeps us updated on an estimate of his BG. Rachel definitively manages the difficult logistics of this care. She deals with insurance companies, refills at the pharmacy, and talking to the reps at Animas (insulin pump) and Dexcom (CGM).

Rachel and I both deal with the daily stresses of handling diabetes. We both count carbs, take BG readings, get up in the middle of the night and evenly split the duties of changing Henry’s pump and CGM sites. Henry has developed a pretty nasty allergy to the tape that holds both of these machines onto his skin, so we have to take a lot of precautions to make sure that his exposure to them is minimized. Rachel reached out to the diabetes online community and found people who helped us come up with solutions when our docs had basically given up and asked us to go to multiple daily injections.

The best balance that we have, in terms of day-to-day care, is that Rachel is very good at keeping track of what Henry needs medically and practically; she amazes me with how much she has learned about diabetes and its care—  and I am helpful in the ways that I try to create some distance from a life with diabetes and a “normal” life for Henry. I’m probably more likely to encourage us to get ice cream or wait to change a site— this balance only functions because of how hard Rachel works.

Rachel: In the wise words of Kenny Rogers, “Know when to hold ‘em, /  Know when to fold ‘em / Know when to walk away / Know when to run.” I know when to hold ‘em, which comes in handy with the rigor and attention counting carbs and dosing insulin requires. Matt knows when to fold ‘em and let Henry live the life of a five year old with birthday parties, extra ice cream, and a day longer with a site. Henry will need both of these skills as he learns to live and manage his diabetes. Balancing diabetes is an art and a science, so I’m the science while Matt’s the art. Matt and I both know when to walk or  run away from a negative comment, failing site, or excessive carb scene.

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Team Pancreas

How has being a caregiver changed your relationship?

Matt: I don’t think it’s changed us fundamentally. We don’t always agree about everything to do with Henry, but we always talk about why we think a certain action is best in the certain moment. Ultimately, we are both focused on making sure that Henry is safe and protected. Chronic conditions are definitely an added stressor, and I’m sure that we get a little snappier at 3:00 in the morning, but we are both committed to each other and to caring for Henry.

Rachel: A lot, but a little. A lot because we are now caregivers for our son, who has a chronic condition, but not a lot because we decided to become partners and then parents together long before diabetes entered our lives, so we’ve mostly figured out how to handle stress and difficulty. A day to day difference is struggling with time, because everyday actions, such as preparing for a trip or eating at a restaurant, are now more complex and require discussion, preparation, and planning. We have to depend on each other more.  

Describe a caregiver technique you and your partner do differently.

Rachel: We both do really hard things. For the past 18 months I’ve put in Henry’s pump site, which feels like I’m stabbing him with a giant needle. Henry anticipates site changes, and it’s just awful to know that I’m causing my child physical pain, even if it’s for treatment. When Henry asks something like, “Will I have diabetes when I’m a grown up?” Matt can answer this question honestly and have Henry laughing within a few minutes, whereas I have to leave the room because I don’t trust myself to answer without getting choked up.

Matt: We have split things up, but we talk or text at least two or three times a day about his care when we are both at work. Changing the site of Henry’s pump is stressful because of the precautions we have to take with his skin and because he dreads them. We put Lidocaine on his skin to decrease the pain but they still worry him. I prep the area on his skin and get the pump primed to administer insulin and hold him while Rachel actually inserts the pump.

In twenty words or less, describe your partner’s caregiving superpower.

Rachel: Matt’s superpower is levity that inspires patience and laughter, needed in the shadow of a wrong number at the right moment.

Matt: Rachel’s superpower is her love for Henry and how this gives her a laser-like focus on keeping him alive.

A Season of Thankful Awareness

In a recent post on A Sweet Life, “Neonatal Monogenic Diabetes: Cameron Lundfelt’s Story,” Cameron’s mom describes the overwhelming standard of care given to young children with garden variety T1D, “I was always concerned about when did he last eatWhat are his sugar levels?  When is the next time he has to have a shot?  Did I give him too much insulin at the last meal? Did I not give him enough insulin? I lay awake at night wondering how I could have done better at keeping his sugars ‘within range.'” Through Cameron’s mom’s diligence, it was later discovered that Cameron has a rare form of diabetes caused by a genetic mutation that can be controlled with oral medication, but all parents of children with diabetes know the fears and worries she describes.

November is almost over, so Diabetes Awareness Month is coming to a close, but the end of the year holidays are starting. Diabetes Awareness Month juxtaposed to the holiday season means awareness morphs back into silent difficulties for so many families living with T1D.

Here we are, at the end of November, taking a deep breath and sharing the life we live in two hour increments during each day and night of all twelve months.

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

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As we enter the holiday season, we’re glad for:

  1. insulin
  2. Fredrick Banting and Charles Best, discoverers of insulin
  3. Dexcom, a continuous glucose monitor
  4. batteries that power insulin pumps
  5. insulin pumps
  6. the Diabetes Online Community
  7. Children with Diabetes, Friends for Life Conference
  8. Henry’s dedicated and caring preschool teachers
  9. Ed Damiano, Denise Faustman, JDRF
  10. Henry’s sense of humor

And after all the chaos, illness, and destruction, the last thing to fly out of Pandora’s box:

The last thing to fly out of Pandora's box. #handsofhope #projectbluenovember

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2015 Type 1 Diabetes Index

November 14th is World Diabetes Day. November 14th marks the 618th day our family has been living with type 1 diabetes. To be sure, it’s difficult to measure or assess the emotional toll of living with diabetes, but there are ways we can measure the impact of living with type 1 diabetes. Here’s a look at Henry’s 2015 type 1 diabetes index. At the end of the blog, there’s a video where some of these numbers are juxtaposed to our everyday life, creating just a glimpse into the emotional side of living with type 1 diabetes.

Number of days Henry’s been living with type 1 diabetes: 618

Number of vials of insulin Henry’s used since diagnosis: 26

Estimated cost of 100 units of recombinant insulin without insurance coverage: $215

Range of a normal blood glucose: 80-120

Number of people living in the U.S. with type 1: 1,250,000

Estimated number of finger pokes Henry has had to check his blood glucose: 7,400

Number of insulin pump site changes Henry has had: 280

Estimated cost of an insulin pump without insurance: $7,000

Estimated yearly cost of pump supplies: $1,500

Chance of developing T1D if no relatives have the disease: .4%

Chance of developing T1D if a first degree relative has T1D: 10-20%

Average number of years T1D takes off of a male and female life (respectively): 11, 13

Number of site changes Henry’s had for his CGM (continuos glucose monitor): 83

Estimated yearly costs of a CGM without insurance: $2,800

Number diabetes related check-ups Henry’s had: 9

Number of miles on the road to Henry’s diabetes appointments: 1,786

Range of non-diabetic hemoglobin A1C: 4-5.6

Range of Henry’s hemoglobin A1C’s since diagnosis: 7.5, 8.1, 7.2, 7.3, 7.0, 7.5, 7.1

Chance someone will die of T1D within 25 years of diagnosis: 7%

Number of Henry’s hospitalizations and emergency room visits related to T1D: 5

Number of nights of uninterrupted sleep in Henry’s house since diagnosis: 0