I Wish People Knew That Diabetes…

Kelly Kunik, who blogs at Diabetesaliciousness, created the hashtag  #IWishPeopleKnewThatDiabetes, and the idea is that on April 20th of every year people share what they’d like others to know about living with diabetes so that no one feels alone on the T1D journey and that others are educated about a life with type 1.

It’s very similar to the project #IWishMyTeacherKnew, and last year over 17 millionTwitter impressions were created with #IWishPeopleKnewThatDiabetes. Sharing fears, hopes, and struggles as they relate to a life with type 1 is certainly raw, but also cathartic. It’s been two years since type one entered our home, and the longer it’s around, I realize that T1D will touch almost every aspect of our lives, but the real challenge is to learn that it will touch every aspect of our lives, and to move on despite it.

When our son was diagnosed with type 1 diabetes I knew that we didn’t do anything to cause it, that he would need to use insulin for the rest of his life, and lows and highs were dangerous. Now, I know more about diabetes, and in the spirit of advocacy, I’m sharing, in no particular order, ten things I wish people knew that diabetes…

  1. I wish people knew that diabetes makes me sad/upset/frustrated/exasperated when I’m at the grocery store.
  2.  I wish people knew that diabetes is often why I’m looking at my phone. I’m checking my son’s blood sugar remotely so that I can check back in on the task at hand.
  3. I wish people knew that diabetes occupies about an hour and half of my time per day, about $200 a month, and we’re lucky to have time and good insurance.
  4. I wish people knew that diabetes means I fear that one day my son will attempt to take his own life by purposefully administering too much insluin.
  5. I wish people knew that diabetes makes me monitor my other child’s water intake, weight, bathroom habits, and moods because I’m afraid that she too will develop type one diabetes.
  6. I wish people knew that diabetes forces me to sometimes trust people I don’t know very well with my son’s literal life, then after he learns to care for his own diabetes, I will have to trust a teenager to make mostly good and responsible life and death decisions multiple times a day, more or less consistently.
  7. I wish people knew that diabetes makes me afraid I might outlive my son.
  8. I wish people knew that diabetes is why I haven’t had a good night’s sleep in more than two years.
  9. I wish people knew that diabetes means almost every week I read about someone who died because they had the same disease as my son.
  10. I wish people knew that diabetes means I have to choose to believe that living with a chronic disease makes people stronger and not weaker, because that’s the way forward.

Please consider sharing your thoughts using the hashtag  #IWishPeopleKnewThatDiabetes on social media on April 20th.

Advertisements

Sleep, Snow, & April

Earlier this week, Beyond Type 1 posted an article, “I Can’t Sleep,” by Sara Jensen. In the article, Jensen describes the lack of sleep, stress, and ceaseless work that create Caregiver Anxiety. I’ve had every experience that Jensen describes, from a doctor admonishing me that my health is being negatively impacted due to stress to worrying that if I sleep through an alarm my child could die.

She writes, “I lay back down and I breathe in, I breathe out, my mind tells me I won’t be able to fall back asleep, and when I do, the alarm goes off again. It feels like I never closed my eyes at all,” which perfectly describes the mixture of sleepless exhaustion and stress parents of kids with T1D often experience.

At our house, some nights blur by in a flurry of insulin, alarms, juiceboxes, and more alarms.

Recently, I traveled for work, and during that week, Henry was being cared for by his father, and my mom, a nurse. This wasn’t my first time away from him after diagnosis, nor was I afraid. I knew he was in good hands. Yet, 1,806 miles away I woke about every two hours, suddenly, as though a giant animal had jumped on my chest, forcing out all my breath. But instead of an alarm or lights blaring, there was just the night. It was quiet. I looked at Henry’s BG on my phone, it was usually in range, and I’d go back to sleep.

After about the fourth night of waking up in a state of emergency when there was no emergency, I realized how profoundly T1D care impacts the most basic aspects of life: sleep, not sleep, food, and how I think about my son. But profoundly realizing something doesn’t change it. I woke up the same way the fifth, sixth, and seventh nights because I’d been waking up this way for two years– the same animal feeling, but I wasn’t afforded quiet to think about it– there was an obligation or almost emergency to contend with, asleep down the hall, in need of insulin or juice.

When Henry was diagnosed with T1D, what I didn’t know about type 1 could fill the stratosphere. For example, I didn’t know that I wouldn’t be able to sleep through the night for the next two years. Now I wonder if I ever will sleep through the night.

Before I left for work this morning it was blustery, while a few wild snowflakes dashed down. I checked my phone before the workday began, and I laughed when this image from FB popped up from three years ago.

IMG_9334

I laughed because when I looked up from the screen, through the kitchen window I watched it snow on daffodils, but there was a time that I didn’t know what I didn’t know. Three years ago not a snowflake was in sight: eleven more months to live without T1D, to sleep through the night, to eat food without weighing it, without weighing so many vital daily decisions that have become necessarily mundane.

The thing about winter in the midwest is that snow turns to mud, turns to flower. It’s just a waiting game, like waiting for a blood sugar to rise or fall.

 

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.

IMG_8555

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.

FullSizeRender (5)

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.

 

Diabetic v. Diabetes

My son was diagnosed with type 1 diabetes when he was three, so it took some time for us to master a new lexicon that had suddenly become part of our daily language: ketones, glucagon, hypoglycemia, and the list goes on. For the first few weeks after diagnosis we moped around the house, afraid to leave for fear of restaurants and grocery stores, puzzled at how to check a blood sugar in the car with a kid in a carseat. During this time, Henry had lots of questions about his “dia-bee-bees.”

Even in those early days after diagnosis, when someone referred to my son as “a diabetic” it irked me in a way I didn’t fully yet understand. When I broke the news of Henry’s diagnosis to friends and family, I closed the email with, “Henry is a healthy three-year-old boy, who also happens to have diabetes.” In those early murky days, when I was struggling to understand the difference between Lantus and Humalog, it was always clear to me that Henry was a person before he was “a diabetic.”

The 2016 Standards of Medical Care in Diabetes is out, and there’s a huge shift in the lexicon surrounding diabetes. The Summary Revisions section declares, “In alignment with the American Diabetes Association’s (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.)'”

“Diabetic” is an adjective for complications related to diabetes, not my kid. My kid is a person with diabetes. Sure, “person with diabetes” (PWD) is more awkward to say; there’s three additional syllables, and the language is obviously stretching to avoid labels, but the change in perspective can be life-enlightening.

At our house, we used to call the Fed-Ex delivery van “the pincher truck.”

IMG_8536

a pincher truck on delivery

This made total sense to Henry, who came up with the name. One day after he’d spent the night in the hospital, his parents, who’d never physically hurt him, had to hold him down 5-7 times a day and give him shots. Not only did they have to give him the shot, but they had to hold the needle in and count to three just to ensure better delivery of the insulin. Sometimes, they had to do this in his sleep. Then they started taping these pinchers (Dexcom) to his skin, and these pinchers came out of the pincher truck every month or so.

Henry’s almost two years into living with diabetes. He wears a pump and CGM (continuous glucose monitor), and he understands why. He’s also learned that sometimes toys come out of the pincher truck. He’s learning there’s never just one thing in this world. There are people, and some of those people have diabetes.

The first line of the 2016 Standards of Medical Care in Diabetes Introduction reads, “Diabetes is a complex, chronic illness requiring continuous medical care with multifactorial risk-reduction strategies beyond glycemic control. Ongoing patient self-management education and support are critical to preventing acute complications and reducing the risk of long-term complications.” That’s some heavy shit.

Here’s the subtext of that Introduction. Diabetes is a disease and a condition. Diabetes (types 1 and 2) is presenting complexities to a medical system that’s been modeled on fixing acute conditions, not managing a chronic disease across a person’s lifetime, which is why so much of the care, education, and financial burden for diabetes falls on the person and the person’s family.

My son needs strength and confidence to take the extra steps of self-care to manage his disease. At five-years-old, he’s already making sacrifices that are necessary to live a healthy life with diabetes. Those first seeds of strength and confidence come from others seeing him as a person first, not a condition.

The CDC is Getting Diabetes Wrong

A recent article from diaTribe, “New Study Suggests Childhood Type 1 Diabetes and Kidney Disease are On the Rise,” should have T1D families and non T1D families alike on the look out. Basically, the article cites a research study published in Diabetes Care that uses data from insurance companies to draw the conclusion that in 11 years the instance of type of 1 diabetes has almost doubled in children.

Here’s the poignant quote from diaTribe’s article, “According to a new study in Diabetes Care, more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults” (diaTribe). 

It’s alarming for any disease to double its rate of incidence in 11 years, but what’s truly alarming is that one of the US’s major operating components of the Department of Health and Human Services, the CDC, gets diabetes wrong. In a major 34 year longitudinal study released in 2014, the CDC makes no distinction between type 1 and type 2 diabetes. Type 1 diabetes is an autoimmune disease, caused by the body attacking its own beta cells and stopping insulin production. Type 2 diabetes is when the body overproduces insulin, but insulin cannot enter the body’s cells, and this process is likely a product of lifestyle and genetics.

Since the CDC makes no distinction between type 1 and type 2 (again two separate and different diseases), it’s able to make the claim that diabetes is on the decline because 2009 saw a trending decrease in the incidence of type 2 diabetes. Here’s a link to the CDC’s study.

CDC 2014 diabetes graph

graph from CDC’s study, “Annual Number (in Thousands) of New Cases of Diagnosed Diabetes Among Adults Aged 18-79 Years, United States, 1980-2014 source: CDC

This study has angered families affected by type 1 because the CDC illustrates a willful lack of understanding in two separate diseases. Additionally, and this is the point I find most frustrating, the CDC has no disease registry of type 1 diabetes.

Remember the reporting of the Ebola crisis that started in March 2014? The number of cases in specific countries was reported daily on multiple news outlets because Ebola was a reportable disease that had a disease registry. Here’s the CDC’s (in partnership with the World Health Organization) current cases. As of this writing, the cases were updated on January 6, 2016, yesterday.

I’m not comparing Ebola and type 1 diabetes; however, if the CDC has the ability to track a disease in distant third world countries and provide up to date current information to the public, certainly the CDC should be able to track the cases of type 1 diabetes within its own country.

Why are insurance companies the ones tracking type 1 diabetes in childhood? Is there a clear picture about type 1 diabetes in the uninsured population? If the CDC were tracking type 1 diabetes AND separating it from type 2, what would the graph for type 1 look like? Between 2002 and 2013 the blue lines would almost double in height. That’s certainly an increasing epidemic worth tracking, especially if type 1 diabetes has an environmental trigger.

Type 1 diabetes was once a rare childhood disease, but it’s increasingly less rare. With the incidence of type 1 diabetes increasing across the globe, but without numbers to study, a cause and cure will remain elusive.

The type 1 community is reacting and calling for change. Here are some actions you can take.

Living with type 1 diabetes presents enough hardships and frustrations, so the government organization whose mission includes,”increas[ing] the health security of our nation” should not be another frustration.

99 Diabetes Problems and Breakfast Is One Of Them

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

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

Food

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

Stress

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

Biology

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

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

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

morning glucose

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

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

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

Food

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

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

Stress

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

Biology

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

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

IMG_8023

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


 

Announcing our first GIVE AWAY!

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

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

Hello, We’ll Talk About Diabetes

In 1919, eleven-year-old Elizabeth Hughes, daughter of Charles Evans Hughes,
Justice of the Supreme Court, was diagnosed with type 1 diabetes, a death sentence. At the time of her diagnosis, children with T1D survived an average of 11 months after diagnosis. The only “treatment” was the Allen diet, a slow starvation—  eating about 400 calories a day from foods like “thrice boiled cabbage” (Total Dietary Regulation in the Treatment of Diabetes).

L: a child with diabetes on the starvation diet, R: same child after treatment with insulin (photo credit: trumanlibrary.org)

left: a child with diabetes on the starvation diet right: same child after treatment with insulin (photo credit: trumanlibrary.org)

Fortunately, Elizabeth was among the first American patients to receive insulin in 1922. She grew up, married, had three children, and died at age 73. When her children were young, she never told them she had diabetes, not even after her oldest son witnessed her convulsions from a severe episode of hypoglycemia. In fact, it wasn’t until her children were grown that she took each child aside and told them privately that she had diabetes.

Her secrecy made sense. She’d been handed a death sentence at eleven. Even after the discovery of insulin, prognosis wasn’t good. Recently, The New York Times ran an opinion piece, “The End Isn’t Near,” by Dan Fleshler, someone who has been living with diabetes for 53 years. Fleshler was diagnosed at seven, and his doctors weren’t optimistic about his longevity, but he’s healthy and here, yet the looming predictions cut into the quality of his life.

A diagnosis of a disease or a condition creates a stigma, and there’s a deep drive to keep any stigma a secret. However, secrets around disease create misunderstanding, shame, and fear. If people with diabetes and their family members don’t talk about what it’s really like to live with diabetes, then it’s easy for misconceptions such as: “insulin is a cure” or diabetes is “easy” as long as the patient doesn’t eat sugar, to circulate.

It wasn’t until my mid-twenties that I met who someone who was open about T1D. Amy regularly checked her blood sugar and bloused for food without any fanfare and answered all our questions, but I had no idea what it meant to have diabetes. In fact, we were hosting a party, and I made tea sweetened with honey just for Amy, because I knew honey was lower on the glycemic index. I’d thought to measure the honey and let her know how much I used, but I had no idea why it would have been better for Amy to drink something with an artificial sweetener in it, which she did.

A few years later, our son was diagnosed with type 1 diabetes, and I knew we would educate ourselves to help Henry live his life in the best ways we could. However, I thought we’d hunker down and live life with diabetes with relative quietness. And we did for a while, but we started noticing things, like when Henry hears the case of his blood glucose meter being unzipped, he holds out his finger without looking up from his Legos or iPad. We started reading information such as, Type 1 diabetes is increasing by 3% annually and affecting a younger and younger population, with some diagnoses occurring before a first birthday. There’s no disease registry, so T1D can’t be studied in a truly systematic way. Some insurance companies deny coverage for life saving and extending equipment, such as pumps and CGMs, for infants and children. Some schools don’t allow students with T1D to use smart devices, such as an iPod, iPhone, or iPad to help manage blood sugars.

It took me about a year to move from being a parent of a person with diabetes to an advocate for diabetes awareness and research. In fact, I think many parents of children with disabilities, diagnoses, and conditions, to their surprise, define themselves as  an advocate after the emergency settles into the daily.

So, for now, we’re speaking up, telling Henry’s story with the simple belief that story and science should work more closely together. This summer insulin turned 93 and Henry turned 5 in September. If we talk about diabetes enough, maybe one day we can talk about it less.

IMG_7239

Amy’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing “Amy’s Diagnosis Story” in her own words.

Amy, diagnosed at age 29, February 2004

It was in Manhattan in the fall of 2003 when I had dinner with my good friend Sam who was diabetic as a result of a bout of pancreatitis a few years before. It was in jest that we decided to check my blood sugar. We’d had steak and potatoes and bread and several glasses of red wine, followed by a rich chocolate cake with sugary espresso. We were laughing at how even a “normal” pancreas would probably be overloaded by a meal that rich, but neither of us expected anything out of the ordinary. My blood sugar came back at 195. We chalked it up to the rich meal we had just eaten and laughed it off, and I tried to forget about it.

Amy a couple months prior to diagnosis

Amy (center) a couple months prior to diagnosis

In the next few months my life underwent a major transition when, after years of struggling to get control, I finally gave up drinking altogether. I had my first sober Christmas and New Years and was taking it day by day in a whole new reality. By February I had lost 20 pounds, which I was thrilled about and assumed was a result of a whole lot of beer weight melting off. Sometime in the middle of the month I started noticing fatigue and a persistent thirst and I very quickly lost another 10 pounds. Then one day on the way to work I literally had to stop on the subway stairs because I was too tired to make it up to the street. I knew in my gut that something was really wrong, and I flashed back to the night with Sam and the peculiar blood sugar. I was terrified to find out what might be going on. I had no health insurance, no money, and my entire family was 2,500 miles away, but the next morning I walked to the urgent care clinic on Atlantic Avenue and signed in to see the doctor.

I was shown to an examination room and was joined by a nurse who asked me what was happening. When I told her my symptoms and about the sugar of 195, she got the doctor to come in. The doctor assured me that I shouldn’t worry, that a diagnosis of type 1 diabetes in someone my age of 29 was very unusual and that the 195 had probably been a meter error. But just to get peace of mind we started by checking my sugar with their meter. When the meter read 305, my heart stopped. The doctor wrote me a note on her prescription pad and told me to go across the street to Long Island College Hospital emergency room and give them her note, with instructions to put me at the top of the list and get me admitted right away. Within an hour I was in the intensive care unit.

A week later I was sent home 25 pounds heavier armed with needles, insulin, a glucometer, and no idea how to adjust to life as a diabetic. My mom flew in and stayed with me for a few weeks as we learned to count carbs, calculate insulin doses, and wake up to check 3 am sugars. Leaving my apartment felt like a major undertaking (with a cooler for my insulin in tow) and I will never forget the first low blood sugar with the sweating, disorientation, and loss of brain power leaving me helpless. I was unsure that I would ever again feel care free, independent, young, or healthy.

Although being newly sober when I was diagnosed was overwhelming, I now see it as a blessing. Getting sober requires surrender to a new way of living and complete willingness to accept what comes as a result. The spiritual strength that I was finding in recovery was key in transitioning to life with diabetes. Now, 12 years after diagnosis and 12 years sober I see the two as one connected event that taught me to cherish my health, to be grateful for each day, and to strive to live a purposeful and joyful life. Managing diabetes can feel like a full time job, yet I have been able to manage it through graduate school, a career, and two pregnancies and healthy babies.

amy marriage

8 years after diagnosis