advocacy

Always Aware

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November is Diabetes Awareness Month and organizations like Project Blue, the JDRF, and Beyond Type 1 use this month to educate and advocate, particularly through social media. The soaring cost of insulin, burnout, healthcare, misplaced jokes about sugar, and most importantly the warning signs of T1D are common topics.

In the past, I’ve used Diabetes Awareness Month to focus on caregiving and diabetes, as well as created indexes that attempt to quantify living with diabetes. Lately, I’ve been quietly thinking a lot about the psychosocial and mental health aspects of living with type 1. I’m certain it’s because as Henry becomes older, he’s becoming more aware of what it means to live with diabetes, and perhaps at seven, he already understands this better than I do. Recently, he told me that since he’s seven he’s old enough to help watch his blood sugar overnight and asked to keep the CGM on his nightstand.

Earlier this fall,  his class talked about fire safety, and through our local fire department, families were encouraged to discuss a fire safety plan: “Every second counts. Plan two ways out.” Henry has been adamant that our family plan two ways out and discuss our fire safety plan, so last night at dinner we did.

Henry asked, “Who will bring the cell phone to call for help?”

I assured him papa or I would bring our phone.

Then he asked, “Who will bring my diabetes bag?”

Taking a deep breath in—in wonder that he already thought of this well before me—I assured him that papa or I would bring his diabetes bag.

For more than half his life, I’ve been playing the role of his pancreas, and I think I’m pretty good at planning and reacting to most things diabetes, but what I didn’t know is how always aware he was and is and will be.

 

A Week To Break A Heart

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This week I read about a government official who implied that only bad people get pre-existing conditions because they aren’t doing the “right thing.” Another representative indicated that people with pre-existing conditions are lazy and should do more to take care of their conditions.

Then, the house of representatives passed a bill to weaken the protections of pre-existing conditions.

This afternoon, while unpacking my son’s backpack I came across this.

“We dream of a world where people are healthy.”

Yes, we do dream of this, but in a world where three-year-old boys get type 1 diabetes, teenagers get cancer, and infants are born with heart defects, I think it’s safe to say that pre-existing is existing.

 

Hidden Costs

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No matter what side of the political fence you find yourself on, one thing is certain: there’s political talk in the air. In our house, we listen to NPR in the morning as we get ready for school and work, and we talk about politics at dinner. Our kids go to an excellent public school and hear about politics on CNN 10 and through their weekly Scholastic Readers. Their classes even held mock elections this past November.

Our kids have been asking a lot of questions about politics. They want to know what a bill is, how to become president, and who makes the laws. They want to know what laws will affect us and their friends.

Because our son has type 1 diabetes, we’ve been following the repeal and replace ACA discussion closely. The ACA isn’t perfect, but it’s pretty clear that the ACA has provided access to healthcare for people who have been living without adequate coverage.

We are lucky enough to have private health insurance, but pre-existing conditions, lifetime maximums, and the ability for our son to stay on our insurance until he’s 26 are important issues for us, so we’ve been writing and calling our representatives to tell them about our story and encourage them to protect access to healthcare for all. Henry and his sister wanted to help, so they wrote a post card.

Explaining complicated issues that our country can’t agree on to a child is tricky, because the parent needs to explain the issue fairly and clearly, illustrating something complex in a way the child will understand. To most kids, the issue is pretty simple: sick people need medicine, so they should get the medicine. How do you talk about profits, risk-pools, or poverty begetting poverty?

Like I said, we’re lucky to have the insurance we do. In 2016, I decided to quietly keep track of the money we spent caring for diabetes, but I stopped counting when we crossed over $2,000 in May. I didn’t tell anyone about the total. I stopped because the figure made me feel fortunate and guilty at the same time. For many families with type 1 diabetes $2,000 may be a monthly or bi-monthly cost. Without the ACA, these costs would be higher.

A few days ago, Henry brought his papa $35 dollars, which he’d been saving for a really cool Lego set, and said, “Here papa, take this. I know health care is expensive.” Pretty simple: when someone needs something, you give it to them.

Diaversary 3

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Henry’s diaversary comes the day after my birthday.  His diaversary always makes me feel a bit glum, because it’s easy to imagine what life was like before diabetes: just eating without counting carbs or dosing insulin, sleeping through the night, or worrying about long term side effects. But if I’m being honest, that life—life without diabetes—is sliding further into my memory each season.

It’s Henry’s third diaversary, and it’s the first diaversary that marks the fact he’s lived longer with diabetes than without it. Yet, he doesn’t need a date on a calendar to tell him that.

Recently at a restaurant, the pre-bolus of insulin started working dramatically on Henry’s blood sugar before the food arrived. I couldn’t reach him to check his blood glucose, so Henry reached into his d-bag and got out his meter.

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He laughed, then said, “Mama, I’ll check my blood sugar. I’ve had diabetes already for three years.”

So diaversaries are about the big moments, like marking another year of living with diabetes, but really, diaversaries are about the thousands and thousands of small moments—going without, waiting, measuring, but also unexpected sweetness, like eating jelly out of the packet while you wait for your food to arrive.

So here’s to another year of the highs and lows, too much, too little, and resting in the spots inbetween.

Perspective

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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

In Search of Simple

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A few years ago, I used a serving spoon instead of measuring cups to plate dinner. If I looked at a nutrition label, it was with passing interest. I left the house with nothing but keys, wallet, and phone.

Now, leaving the house requires a search and preparation of the d-bag, making sure it contains glucagon, meter, glucose tabs, enough test strips, lancet, CGM receiver, checking my purse for back up rescue sugar, and glancing at a blood sugar. I’m the lady blocking the grocery store aisle, squinting at nutrition labels. I weigh and portion Henry’s lunch, and include the carb counts in a note for the school nurse. Twenty minutes before eating, (you know that really calm time right before dinner when the kids are ravenous and you’re trying to cook and answer homework questions at the same time) I have to know how much and what Henry will eat, count the carbs, check his blood sugar and give insulin. When shopping, I have to pick out clothes that will accommodate the medical gear he wears. The list goes on…

Having diabetes takes away many simplicities I once took for granted, like packing a school lunch. During a particularly harried morning, I remembered the Leaf  & Love Lemonades that I won from their Instagram giveaway. I threw one in his lunchbox and a wave of simple joy washed over me. It reminded of life before diabetes, when I could just hand my son food without solving complex math equations or worrying about the effect it would have on his immediate and long term health.

This d-life is hard, but it certainly allows for celebration of the simple, like an in range blood sugar or an awesome lunch.

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2017 Resolutions

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As Henry delighted in putting together his 734 piece “expert level” winter train Lego set, we had to interrupt him and test for lows multiple times. He hung out in the 60s and 70s no matter how many glucose tabs and airheads we threw at the lows.

In fact, it wasn’t until my husband asked, “Do you think the Legos are making him low?” that I put two and two together. I remembered that about six months ago Henry worked most of the morning on a complex Lego set and he remained low most of the time. Then I recalled reading about 504’s, and many parents explained that the mental energy of standardized tests often drove their children low, likening complex mental activities to a kind of sugar-guzzling exercise.

While I don’t make specific resolutions at the start of the year, I do believe in rededicating and refocusing attention and efforts periodically.

While Henry happily put his Lego set together in a state of mild hypoglycemia, I resolved to pay attention, not only to how food and activities affect his blood sugar, but to how our law makers handle healthcare.

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In a few days, a new administration will take office, and one of the first items that will be considered is the repeal of the Affordable Care Act (ACA). I’m not sure how health and healing, particularly the health of children, got political, but it is, and it shouldn’t be. I’m not a Pollyanna, I understand it’s really about money; a few phone calls to an insurance company to discuss $1.40 test strips makes this very clear.

I understand that the ACA is not perfect. Thankfully, we have private insurance, and since the ACA passed a few years ago, our premiums and co-pays have increased. We pay more for our coverage, which appears to be increasingly less. However, it means that people like Henry, who came into the world with a quarter of a million dollar hospital bill for a stay in the NICU, who was diagnosed with a costly, chronic disease at three-years-old can never have a lifetime maximum. He cannot be refused for a preexisting condition, and he can stay on our insurance until he’s 26. But more importantly, the ACA provides access to health care for people who are not able to be a part of the privatized market. Imagine guessing at your blood sugar because you could only afford a test strip a day or rationing your insulin and choosing not to eat or not give insulin because you couldn’t afford it.

This morning, when the governor of my state called for a “move to one comprehensive statewide health care contract for public employees,” I was paying attention. When my House Representative was re-elected, I wrote a letter and explained the role of the ACA for people who live with a lifelong condition. I urged him to support medicare coverage of a continuous glucose monitor, and thanked him for signing the letter for the Special Diabetes Program.

In 2017, I’m paying attention. Here’s how to contact your lawmakers. Tell them what’s important to you. Make them pay attention.

Christmas List

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Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.

As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.

Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.

For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.

A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.

Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?

Me: Yeah, I guess so. Is that something you really want?

Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?

Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.

(long silence, Henry regards the back of the book)

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Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?

Me: Well, some people say yes, and some people say no.

Henry: So, is diabetes a disease?

Me: I think you’re the person who gets to decide that. So, what do you think?

Henry: I think diabetes is just diabetes.

 

I Can’t Count All the Snows

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“I didn’t know it was morning,” Henry said as I raised the blinds in his hospital room. “How did it get morning?” he asked.

“You went to sleep last night, and got better. Now it’s morning. And look,” I said gesturing to the window, “It’s snowing.”

He looked out of the window, his arm held straight, but at an odd angle by its IV splint.

“I can’t count all the snows,” he replied as his eyes darted from heavy flake to flake melting just above the labyrinth of the hospital’s lower roofs.

My eyes felt like someone had rubbed them with sandpaper. Less than twelve hours before, in the ambulance ride from one hospital to the other, I tried to count the number of his hospitalizations, the nights I’d slept beside his isolette, in his hospital bed, or not at all. I lost count after fifteen.

But this is not that sad story. There will be sad (and happy) stories to come, and more nights to spend in his hospital rooms. That’s life with type 1. Instead, this is a story of advocacy; there’s power in knowledge.

Tummy bugs can be dangerous with type 1 because ketones develop quickly, while blood sugars often drop. As if this weren’t complex enough, the nauseous person can’t keep anything down so it’s dangerous to give the insulin and fluids needed to clear ketones. If ketones are high enough long enough, then DKA develops. Thankfully, an IV with a sugar drip is a simple solution.

This time, it took two hospitals, an ambulance ride, and eight attempts to start his IV. Early in the morning, on the pediatric unit, his ketones moved from large, to small, to trace, and we took a deep breath, once again witnessing the “difficult magic” of diabetes.

I watched Henry sleep and thought of the tense moments last night as the sixth or seventh person dug in his hand, searching for a vein while Henry cried out in fear and pain, his blood sugar teetering at 68 and large ketones, the blood work showing that he was becoming acidotic, the well-meaning medical staff, whose experience with type 1 was nascent.

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Outside, the first flurries of snow were falling, after a warm and protracted fall. Finally, the season’s cold was descending. In a few hours, we’d be on our way home from the hospital with another reminder that type 1 diabetes is a balancing act between highs and lows, too much, too little,—an emergency and the everyday.

 

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.