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.

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A Week To Break A Heart

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

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

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

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

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

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

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.

 

Half His Life

Mr. Neideffer, my Algebra II teacher, tapped his knuckles loudly on the board. He looked at me expectantly, prompting me with more loud taps against the blackboard, “Well, Rhonda, what’s the answer?”

Rhonda is my mom’s name, and some 25 years ago, Mr. Neideffer had my mother as a student in Algebra II. He called me Rhonda so often that I eventually stopped correcting him and just answered to my mother’s name.

On this day, we were studying direct and inverse proportions, and while I didn’t know the answer to his question, the irony of the lesson was not lost on me. Instead of focusing on Mr. Neideffer’s question, I thought about the age difference between my mother and me. When I turned 25, my mom would be 50, and I would have been alive half as long as she had been. When I turned 50, my mom would be 75, and I would have been alive three-fourths of the time as she had been. We would always be 25 years apart, but as we got older (an increase) the difference between how long we’d lived on the earth would decrease.

In the diabetes community, people often celebrate their diaversary (diagnosis + anniversary). While we talk about it, we don’t celebrate it yet, as we’re waiting to see how Henry wants to mark this day.

Since the invention of insulin, every diaversay is no doubt a marvel; however, I can’t help but feel somewhat sad because it marks another year of living with a chronic disease, which is hard work that we do everyday. Yet, another date makes me sadder: December 15, 2016.

This day marks the midpoint, where Henry’s lived as many days with diabetes as without. Everyday after December 15th is an inverse proportion: the amount of time he didn’t have diabetes decreases compared to the time he will have it.

Not uncommonly, someone will tell me that we’re lucky Henry got type 1 diabetes so young because he won’t know a different life. While I want to believe this, I can’t. I think of the greater proportion of time his blood vessels will be exposed to high blood sugars, the greater likelihood of complications. If I got diabetes right now, I’d be in my 70s before I’d have lived half my life with T1D. Henry turned 6 this year.

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When I become too forlorn about the burden of type 1, and what that means for my son, I remind myself that the miracle is he turned 6—that 96 years ago, before insulin, people with type 1 could expect to live 2-3 years after diagnosis. The miracle is everyday after January 11, 1922 when insulin was first delivered to a person with T1D, and that miracle includes today and the one after.

I Can’t Count All the Snows

“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.