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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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

Tom Hanks Sausage Links! a.k.a.: Co-Parenting Children with T1D

Presenting, in comic strip form, texts with my husband and fellow co-caregiver, wherein I just text letters to get his attention about a rapidly dropping low blood sugar, and autocorrect adds title inspiration: hanks link.

Tom Hanks

Parenting a young child with diabetes is a mixture of all-the-time-low-level-anxiety and anger/worry/warrior/defeated super vigilance, so it’s better to have two capable people on the front lines. My husband and I have a complementary approach to care; I’m the letter of the law and he’s the spirit of the law, and for our son to balance the burden of T1D across his lifetime, he’ll have to be both.

One random morning in March almost two years ago, my husband and I were learning to test each other’s glucose, but now we’ve tested Henry’s glucose over 6,000 times (20 months X 10 or more times a day). Every two days we change a site for his insulin pump and every seven days we insert a CGM (constant glucose monitor). About every 45 minutes, one of us looks at our phones to see where his blood glucose is, and every time we ever give him anything to eat or drink for.the.rest.of.his.life, we calculate the carbs and apply insulin or sugar.

I’d do this for Henry for the rest of his life if I could, but I know that living a life of independence, freedom, and self-sufficiently means I’ll teach Henry to care for his diabetes little by little, and that crushes me, because right now my husband and I are working really hard to replicate a pancreas, and it takes sleep,

my nightly alarms

my nightly alarms

brain-space, sacrifice, hauling gear, literal hours from our day, money, and focus. Type 1 diabetes is a heavy burden to share, but it seems insurmountable to carry alone.

November is both Diabetes Awareness Month and National Family Caregivers Month. Before my son was diagnosed with diabetes, I thought caregiving was typically something the younger did for the old. In it’s more raw version, caregiving reverses its normal evolution and becomes something the older does for the younger, either for a lifetime or a portion of a lifetime. Now that we’re parents who are also caregivers, I see how many other parents share this joint occupation, so this November, Semisweet will be highlighting stories of parents who are caregivers.

To kick off the discussion, please check out this great video, “I Am the Pancreas,” by Rick Suvalle, dad of two T1D kids. He followed his son and daughter around for a few days with his iPhone to show what caring for T1D kids is like. To the parents of young T1D kids: we are the pancreas!

Connor’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 Connor’s Diagnosis Story in his own words.

Connor, diagnosed at age 15, October 30, 2009

I walked up to my math teacher’s desk, and asked for a hall pass. He looked at me with furrowed brows, “Connor, we’re only ten minutes into class. You should have gone before the bell rang.”

Something was going on with me. In my family I’d always been known as the one with the iron bladder, the champion of long car rides and movie viewings. But recently, I had to go to the restroom every half hour. Liquids rushed through me, and no matter how much I drank I was still thirsty.

When I returned to the classroom and gave the pass back to my math teacher, he studied my face and then the rest of my body. “Are you feeling alright?” he asked me, his tone more accusatory than concerned.

Later that day, I met my dad in the school lobby to sign out for a doctor appointment my mom had scheduled to address these strange symptoms.

“Are you okay?” my dad asked, as he pulled me into the corner of the lobby.

Over the past two weeks, teachers, students, and family members asked me that question over and over again. A couple of weeks ago, I’d had the flu and dropped a considerable amount of weight. My performance in cross-country meets had also descended into a valley of disappointing rates and unfinished races, but I figured I was still recovering.

I usually brushed off this repeated question, but when I met my father’s gaze, I knew there was something else. Sighing heavily, my father ran a hand through his hair. “Connor, I’m just concerned. Your math teacher contacted me earlier today and told me he’s concerned that you’re bulimic.”

“Excuse me?” I demanded in a whisper, my voice raspy from a dry throat. “Dad, you see how I eat. There’s no freakin’ way I’m bulimic. How could you believe something like that?”

“Connor, I’m not saying I agree with him, but you have been going to the restroom a lot after meals and you’ve lost so much weight that… well, it comes to mind.”

My family doctor was known for being a jokester amongst my siblings and myself. Generally, visits to the clinic involved thirty minutes of minimal tests being done while he rambled on about the crazy experiences of his own kids, or dropped as many bad puns as humanely possible. So when he stepped into the room, white lab coat swaying as silent as his wordless mouth, I knew there was something deeply wrong.

“Connor, we need to get you to the University of Iowa Children’s Hospital immediately,” he said sternly as he flipped through his clipboard until he found the form that he was searching for. He explained to me that my blood sugar was close to 500 over the normal level, sitting dangerously at 610. This also meant that my body had entered a state called ketoacidosis, a condition where my body was trying to urinate out toxins, which explained my constant thirst.

I stopped hearing anything that he said after the words “near coma” were uttered, and even my mother’s tight grip on my hand as she rushed us down the highway towards Iowa City couldn’t stop them from circling in my head.

With my mother beside me in the emergency room, a nurse explained that I’d lost so much weight because my body could no longer break down carbohydrates. Due to my inability to digest food properly, my body was now attacking the little amount of fat I carried. Before the appointment, I’d merely seen myself as a scrawny fifteen year old who’d lost a couple pounds, not 25 pounds in 2 weeks.

The medical staff told me that with the right training and equipment, I could battle Type 1 Diabetes, that with time I would get used to lancets and needles and blood drops and damaged nerves in my fingertips. There was one crucial piece of knowledge that was implied: T1D cannot be defeated, only subdued.

On my second night in the Pediatric Unit, I was jolted awake as a sharp object stabbed into my pinky finger. I looked over to see a nurse in blue gloves testing my blood sugar. “Sorry, I didn’t mean to wake you,” she said.

“It’s fine,” I replied groggily, and motioned towards the tester in her hand. She brought the meter over so I could see it. The screen flashed: 248.

I gave her my best smile, but I averted my gaze, not wanting her to see my fear. With all the talk of comas, needles, diets, and other health complications like loss of sensation in limbs, and (very rarely) blindness, my morale was still low.

“You play Kingdom Hearts?” she asked me, holding the Nintendo DS case that’d been sitting on my nightstand: the newest game in the series, Kingdom Hearts 358/2 Days. I’d played it five hours that day, sitting in my bed while my parents conversed with doctors about insurance and insulin.

She laughed, “I love these games. You know what? You’re kind of like a video game character now.”

I sat up and pulled my legs to my chest, resting my chin on my knees. “How?”

“Well, you have to regulate your blood sugar, right? And what you eat and drink, and how much you exercise, and when to take shots. Stuff like that.” She held up the blood glucose meter, pointing towards the digital numbers. “This is your life bar. And if your health gets too low, you need to drink a potion to get yourself back at the top of your game. But when it’s too high, you’ve got a status ailment, so you need to take your insulin, which is an antidote. And your lancet is your weapon against not knowing what your levels are.” She winked at me. “You’re going to be fine. You should get back to sleep, you’ve got your four hour class on diets and insulin dosages tomorrow.”

I realized then that many health professionals were here trying to make their patients’ lives easier or, at least, bearable. She didn’t need to make that analogy for me, or even talk to me when I’d woken up. But she did, and that made all the difference.

Connor today as a college student

Connor today as a college student

Melia’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 Melia’s Diagnosis Story in her own words.

Melia, diagnosed at Age 9, February 15, 2003

Usually when I am asked how I was diagnosed with type 1 diabetes, I tell the short and sweet version, “My brother had the flu then I got the flu. He got better and I didn’t.” This is followed by the onslaught of how I got diabetes. “Did you have a bad diet? Were you overweight? Is that the good or bad kind? Does your family have a history of diabetes?”

No, no, there is no good kind, and still no. In fact, when I was diagnosed T1D was not really considered genetic yet. Today, research suggests otherwise. The best way to describe it is to say that there is something in my genes that was waiting to be triggered. I just happened to get the right bug at the right time, which made my immune system turn on itself and attack my pancreas. If I hadn’t gotten sick those genes may have never been triggered, or it could have just been prolonged. So, to make the short, sweet story not so sweet here is the long version:

Melia one week before diagnosis

Melia one week before diagnosis

On Valentine’s Day I lay my head on my desk as my classmates dug into their candy bags and Valentine’s cards. After school my parents packed my brother and me in the car and we left for my grandfather’s birthday celebration in Chicago. The drive took an extra 2 hours, because I had to use the restroom so often. We sat in a fancy restaurant for a late dinner. I made my first trip to the restroom before the drinks arrived. We ordered our food, I drank all my water as fast as I could and left for my second trip to the restroom. A few minutes later I went back for the third time. This time I felt nauseous. My parents wondered what was happening to me, but I insisted I was fine. We had only just begun eating when I was sick at the table. The next part I remember is my mother putting me in the bathtub at my grandparent’s house where she noticed I’d lost an unbelievable amount of weight. Immediately, I was taken to the E.R. One look at me and the doctors knew what was wrong; they didn’t hesitate to admit me. I was diagnosed with Type 1 Diabetes on February 15, 2003. My A1c was 15 and my blood sugar was 1024. The doctors were shocked that I was coherent because, as I would find out later, I should have been comatose. I was in 4th grade.

The next 5 days were spent in the Intensive Care Unit, working toward lowering my A1c. From there I was transferred to the hospital where I began learning how to check my blood sugar, take insulin, and count carbs. I gave myself my first injection. I started on NPH and learned the “clear to cloudy” rule of mixed insulin injections. I would start Humalog and Lantus when I went home. As I began learning the routine that would become my lifeline, everything from the previous few weeks also began making sense. I showed all the symptoms of Type 1 Diabetes: increased thirst and hunger, frequent urination, weight loss, lethargy. Even though my mom had taken me on several doctors’ visits my parents had continually been told it was merely a virus, a cold, the flu. My brother had gotten over his flu symptoms, but the antibiotics made no difference for me.

By the end of my week in the hospital, everyone could tell that I was feeling like myself again when I intentionally triggered the floor lock down with my hospital I.D. bracelet.

After that week I was released from the hospital and 3 days after that went home to Iowa. The first trip I made to the grocery store took all day. Tasked with finding low carb snacks, my parents and I read every last nutrition label in the store. Sugar free Jell-O, string cheese, gold fish, and celery. This would become the usual for me throughout all of school. I’ve eaten enough celery in my life to never want to look at a stalk again. Slowly, things returned to some kind of normalcy. I went back to school and I was getting healthy one day at a time. Every day is still a learning experience.

Of T1D, I will say this: There is an immense list of things I’ve been told I can’t do. I disagree with that list. I survived college. I know how to carry 6 months of insulin supplies on a plane. I’d like to get my scuba certification. My mother taught me that I was a kid first. So I have never let my diabetes stop me. I refuse to let it. I am not a diabetic. I have diabetes. It is my disease. I have diabetes, it does not have me.