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Hard Questions on World Diabetes Day, and Everyday

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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.

LOVE IS ON 2016 Challenge

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I just returned from giving my son a juice box in his sleep. His blood sugar was low, 68, and about half an hour earlier it was 62. My son is 6, and he has type 1 diabetes. Right now, I’m his pancreas. I count carbs, estimate how the types of foods he eats will interact with the amount of insulin I give him. I think about his blood sugar at least once every waking hour. I even dream about blood sugar numbers.

However, this won’t always be the case. This is Henry’s diabetes, not mine. Little by little, I’ll hand over the tools and knowledge he’ll need to keep himself alive and healthy. Like a parent teaching a child to drive, we’ll circle the block, drive around town, and eventually he’ll back out of the driveway alone.

In the future, when Henry is his own pancreas, I won’t know about every low, how much insulin he gave himself, nor what he ate. He’ll figure out this diabetes management thing from us (from all the years of talk and practice) but also from other places, like the diabetes online community (DOC). When he’s older, he won’t share all the challenges he has to endure. He’ll rightly look to other people with T1D, and thankfully, the DOC offers amazing resources: personal blogs, research, nonprofits, and communities, like Beyond Type 1.

Beyond Type 1 is an exciting organization that aims “to be provocative, inclusive and disruptive: putting a face on this disease, clearing up misunderstandings about who is affected by T1D and eradicating the stigma that comes from living with a chronic disease. [Beyond Type 1 recognizes] there is a different narrative to be told: that of a strong empowered community living a powerful life beyond the diagnosis” (from www.beyondtype1.org). Unlike some places on the internet, Beyond Type 1 focuses on being empowered and living beyond a T1D diagnosis.

I am beyond thankful that Nick Jonas and celebrity chef, Sam Talbot, spoke up and out about their T1D, and helped found Beyond Type 1. I’m glad there are a bunch of amazing people working at Beyond Type 1 to create a positive community with many resources for education, access, and empowerment.

Right now, Beyond Type 1 is in a fund raising challenge, the Revlon LOVE IS ON 2016 challenge. For the organization that raises the most money, Revlon will donate another $1 million dollars. Please consider making a donation in any amount. We just did.

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@beyondtype1 shared Henry's story today. #t1d #diabetes

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Across Three States and a Mighty River

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We participated in a lot of fundraising this year, including our first JDRF One Walk. Now, Henry is a youth ambassador for two cyclists who will complete a 100 mile ride across three states and the Mississippi River in the JDRF Ride to Cure Diabetes August 11-14. Henry is a youth ambassador for Nicole and Harrison.

 

Participating in each fundraising event is a humbling experience. Sure, it’s not easy to ask friends and family for money, but once the money is raised and I’m at the event, I’m awed by the sheer number of people there. Huge groups of people are in matching shirts, rallying for one person.

When I was in elementary and high school, I knew a couple of people who had type 1. During graduate school, one of our dear friends had been diagnosed just prior to starting school. But these were a few people, and then my son was diagnosed. My world got simultaneously smaller and bigger.

A few months ago, in our little town, I was waiting to pick up some Thai take-out we’d ordered. I heard the beep of what I was certain was an insulin pump. I looked around the five table restaurant and saw an older man bolusing for his meal. It’s happening more frequently: I’m encountering more and more people with type 1. Maybe I’m just seeing things I would have never noticed before, but with all the other families who have infants and toddlers recently diagnosed with type 1 that I meet through events or the in Diabetes Online Community (DOC), I think I’m not only noticing the invisible world of T1D, but also that the incidence of T1D is on the rise.

I recently heard a talk by the ADA president, and he said that every 20 years the incidence of type 1 diabetes is doubling. It’s no wonder that a JDRF One Walk or JDRF Ride to Cure Diabetes event should host a larger than expected number of people who have been affected by type 1. So that’s the girt of it: while a cure remains elusive, an increasing number of people will need a cure. If you’ve got an extra $5 bucks, send it to Nicole and Harrison as they fundraise for the JDRF.

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One day, when Henry’s older, I’d love to train for this ride and complete it with him. In the meantime, here’s a really great podcast, where diabetes mom, Moria McCarthy, talks about he challenges of completing a JDRF with her daughter, Lauren, who happens to have type 1. The podcast is Diabetes Connections by Stacey Simms.

Harrison and Nicole, we’re cheering you on!

 

Social Media for the Social Good

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“Social Media for the Social Good,” that’s how Kerri Sparling described the project, Spare a Rose Save a Child, on Stacey Simm’s February 2nd podcast, Diabetes Connections. The idea behind Spare a Rose Save a Child is simple: buy one less rose than you would have on Valentine’s Day and donate its cost. By donating $5, the cost of one rose, a child is supplied with insulin for a month.

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Living with a chronic condition means you have to secure your oxygen mask first, but when cabin pressure is restored, there’s an awe-filled moment when you can gaze out the window at the top of clouds and be amazed that you’re in about the fourth generation of humans who’ve lived on this earth, to fly in the air, and about the third to be alive since insulin’s been discovered. It doesn’t take long to recognize that access to life-sustaining medicine shouldn’t be relegated to where you were born.

As we were being discharged after our son’s diagnosis, a hospital pharmacist sheepishly walked into our room. He was carrying a large brown paper bag, and at first I thought it was odd that he was holding groceries. I thought maybe he was on his way home to prepare dinner and just wanted to check-in with the doctor, who was going over discharge orders with us. It turns out the sack held a month’s supply of syringes, lancets, ketone test strips, alcohol pads, and two kinds of insulin. As a way of apology, he said this was one of the worst parts of his job, entering the room of a young child who had just been diagnosed with a lifelong disease and letting the family know that they’d be billed around $500 for the month’s supply of medicine and medical equipment the hospital was sending home. He then noted that we had good insurance and would be paying less than that.

And we do have good insurance. In fact, we have access to everything (medical equipment, doctors, education, medicine) that we could possibly need to take care of our son’s diabetes, but this isn’t true for the underinsured, those without insurance, and those living in developing countries. Diabetes is hard, and we have everything we need. Diabetes is hard, and it’s unthinkable for those who don’t have what they need. This Valentine’s Day instead of buying chocolate and flowers, we’re buying insulin for someone. What’s sweeter than that?

Charitable Fighting

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On episode 41 of the Juicebox Podcast, host, Scott Benner talks with the JDRF’s Director of Discovery Research, Albert Hwa, about some of the current and promising research the JDRF is doing. During the interview Benner posses an almost rhetorical question, “What’s the last thing we cured as a society? Is it polio?”

This question hit me hard, maybe because I was pulling into the drugstore parking lot to get yet another month’s supply of insulin and test strips. We’ve never told our son that his diabetes will be cured. I don’t count on type 1 diabetes being cured in my lifetime, or his. I hope it will, and it’s wonderful to hope and support the goal of curing diabetes, but I think it’s dangerous to promise a young child with diabetes that his or her disease will be cured.

If Henry grows up believing that his disease will be cured in five or twenty years and it isn’t, how will this affect his feelings toward the organizations, scientists, and doctors who are working on a cure? I’ve heard so many people and families affected by T1D talk about turning away from charities, organizations, and even their own self-care, because at diagnosis, medical professionals and organizations said a cure was on the horizon in X years. And after X years arrived, there’s no cure.

When Henry asks if he will have his diabetes forever, we tell him yes. In general, when “yes” is a harder answer than “no,” the question is serious. We tell Henry that he’ll have his diabetes forever, but that it will get easier to have T1D because doctors and scientists are working really hard on ways to make diabetes hurt less and be easier to take care of.

If you follow diabetes research, you’re well aware that people have strong opinions about the JDRF, The Faustman Lab, and other organizations. The stakes are high and charitable giving is limited, so it’s natural that opinions butt heads. Shorty after our son’s diagnosis, I was on the phone with our local chapter of the JDRF. I’ve read about the promising trials going on at the Faustman Lab, and I was in the room when Ed Damiano released the iLet this summer. Some people gasped, and others who’d been living with diabetes for decades began to cry, and in my own anticipation for Henry to have a better life, it struck me that this is one of the many ways hope arrives.

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Photo Credit: Jeff  Hitchcock, Friends for Life

When Banting first conceived of insulin, it’s rumored he was in a semi-intoxicated state, preparing for a lecture on metabolism in the wee hours of the morning, while in a less than prestigious lecturer position. He was largely working in isolation without much support. Lightening may strike twice, but I’m not counting on the next diabetes breakthrough to emerge from isolation and without support.

I don’t know if the next advancement in diabetes care will be islet transfers, beta cell encapsulation, or related to immunotherapy. I do know that it’s important that my son sees us supporting the people who work everyday to make his life easier.

This week, Semisweet donated money to the Bionic Pancreas, the Faustman Lab, and started Team Henry for our local JDRF One Walk. We added a Donate page to provide more information about diabetes research. Please consider joining us in one of the causes.

2015 Type 1 Diabetes Index

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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