To Celebrate

To mark milestones in our family, we usually cook a nice meal and invite friends and family to celebrate with us. Of course there’s a cake, some ice cream, and  a few streamers left over from the previous event, like a baby shower we hosted seven years ago. Instead of planning an elaborately themed party, we enjoy good food and conversation to celebrate birthdays or anniversaries.

Our son, who has type 1 diabetes, turned five this September. He was diagnosed with type 1 at three-years-old, so he’ll probably never remember a life or birthday without this disease. We were planning a party per usual, and I don’t know exactly where the plot shifted, but it did. Henry’s only requests were Toad Cupcakes (à la Mario Kart) and a few Lego sets, but a little planning and a few Pinterest visits later, his 5th birthday was under the big top.

I made this. This is not a Pinterest Fail.

I made this. This is not a Pinterest fail.

We went BIG. I don’t want to say the circus celebration was diabetes related, but I have to admit, our whole family is seeing life and milestones through the lens of diabetes. Sometimes, the future I imagine for my son is grief-worn and full of woe. Other times it’s more kick-ass and victorious. The truth is probably somewhere in the middle with weekly visits to both extremes.

So, this year we erected a massive play structure that was given as birthday present by grandparents:

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We rented a bouncy house:

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We invited the neighborhood kids over to a drive-in move later that night:

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The truth of it is that this year has been hard. Every two days Henry anticipates a painful site change for his pump, which is an improvement over an injection of insulin every time he wants to eat. He waits to eat his food while his blood is checked and other people are already eating. Some nights he drinks juice in his sleep to combat lows. The truth of it is that future years will be hard too, and Henry will grow up before his time, because type 1 diabetes demands attention, focus, and discipline; characteristics not every adult posses.

I don’t believe that disease makes my child an angel or a hero. I realize this statement offends many people. I understand how this statement offends people. However, living with a chronic disease has taught me that the distinction between hero, and sick, and victim aren’t very useful. In fact, the distinctions between most things aren’t very useful. Having type 1 diabetes has made my son’s life more complicated and this makes him one tough kid, because a diagnosis of type 1 doesn’t allow for other options.

I’m cautious to say that living with a chronic disease is instructive. If I could flip  a penny into a magical fountain and wish this away, I’d trade every realization I’ve had about living with a chronic condition before that penny made one full rotation.

However, living with a chronic disease has shown me it’s worthwhile to look for what to celebrate. Sometimes it’s a birthday. Sometimes it’s a blood sugar that’s in range. Sometimes it’s the fact that I don’t cry when my son asks me a really difficult question, like why he has diabetes.

Around our house, most of the recent celebrations are pretty simple: like not being late despite everything we have to do to leave the house, guesstimating the carbs in a restaurant meal of beef tacos with a side of rice and beans, finding just the right spot to start a site, and really, really, really meaning it when we sing “Happy Birthday.”

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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

New Insulin? Apply Glucose!

Tonight, before dinner, Henry slid into the kitchen like it was home plate. He lay splayed on the floor and shouted, “I feel low.” Then he groaned, “I feeeeel looooooooooooow.”

He started a new vial of insulin yesterday, so we’d been on the lookout for lows. In fact, we increase his ratio so that he gets 10% less insulin on the first days of new insulin.

Just a couple of minutes prior, his Continuous Glucose Monitor (CGM) read 128, with an arrow straight across. Now the CGM read 83 with one arrow down. I can count on one hand the number of times Henry’s told me he felt low. Like many pediatric people with type 1 diabetes, he has hypoglycemic unawareness. If he was telling me he felt low, then I knew he was low, low, low.

I gave him a glucose tab before checking his blood glucose, then wiped his finger, tested his blood, and during the four second countdown Henry asked, “What do you think it will be? 21?”

Here’s my four-year-old son, guessing his blood sugar during hypoglycemia. It’s moments like this that slay me as I walk the diabetes tightrope that is anchored to the wind.

“Let’s hope not,” I said. “21 would be very low.”

“What if it’s 12? Would 12 be bad?” he asked.

“Yes, 12 would be too low,” I said.

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“43! Mama, I’m 43.”

Henry ate two more glucose tabs and sat in my lap as he sweated through a shirt. But sure enough, the sugar started surging and he glided up to 61 then 124. The low left him ravenous, so he ate dinner in five minutes. Then after dinner (and insulin for dinner) this:

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Here’s the irony. The only thing that’s going to bring down 314 is more really potent, new insulin— the same thing that caused the 43. 

No Added Corn Sugar

I’ve always read nutrition facts, but now I analyze nutrition facts because I have to depend on the the carbohydrates to determine how much of a life sustaining (or ending) drug, insulin, to give my kid. The first trip to the grocery store after our three-year-old son was diagnosed with type 1 diabetes was shocking. Our local grocery store has a nutritionist, and shortly after explaining why I was looking for certain products he said, “A grocery store’s a bad place to be if you’re diabetic.” He wasn’t saying anything I hadn’t already felt, but where else do you get food in March in the midwest?

I was at the grocery store for three hours, reading the nutrition labels for every food we typically eat. Freezing, I stood at the dairy case shaking my head at the yogurts, not because Henry couldn’t eat yogurt (he can), but because of all the added sugar in most every food we eat.

We’ve always been a family that cooks from whole ingredients, belongs to a CSA, and frequents farmer’s markets. However, we still have snack foods and sweets in our house. We’re pretty moderate— a little bit of most things, but having type 1 diabetes at our table has made our intentional choices even more intentional.

Reading nutrition labels and portioning food is a good reminder of just what and how much we should be eating.

I came across Eve O. Schaub’s memoir, Year of No Sugar. For one year, Schaub and her family of four ate only food with no added sugar. As they embarked on this year, the family had to discuss what the ground rules were and what defines no “added sugar.” Schaub was inspired to start the project after watching the amazing lecture, “Sugar: The Bitter Truth,”  by Dr. Robert Lustig, a Professor of Pediatrics, Division of Endocrinology at UCSF.

In case you don’t watch the 90 minute lecture, here’s the take away. Since the 1950s Americans are about 20 pounds heavier. We eat more sugar and carbs than we use to, and here’s the science part (45:00 into the video): fructose is metabolized in our liver in a way that’s similar to alcohol. Dr. Lusting says chronic fructose exposure results in metabolic syndrome:  obesity, lipid imbalance, and type 2 diabetes.

I know type 1 diabetes and type 2 diabetes are two separate diseases, with two separate etiologies. Type 1 is an autoimmune disease and type 2 is a disease associated with the interaction of genes and lifestyle. Since our son lives with type 1, we’ve become more aware of just how much sugar is in everything we eat. Constantly reading nutrition labels is a reminder of just what we should and shouldn’t be eating. Focusing on carbs and sugars has also shown us that  sugar is ubiquitous, so maybe it’s time to change the conversation around type 2 diabetes from one of shame and blame to one of regulation and education when it comes to the food supply in America.

It’s Never Just a Number

Now is a really exciting time to have type 1 diabetes. I realize how absurd that sounds, but just 18 months ago we joined the diabetes world with a bag of syringes and a log book. A few months later our three year old transitioned to a pump and continuous glucose monitor (CGM). However, the data from pump and CGM were not compatible with a Mac. We found a workaround for the pump’s data through Diasend, but at the time it wasn’t approved for use in the States. Dexcom didn’t send data to anything other than the receiver. So these great tools existed, but they spoke different languages.

Thanks in large part to a vocal patient base, now a plethora of diabetes devices are working to speak the same language. The FDA is releasing products and software faster than anticipated. Just last week Dexcom G5 came out, which means a smart device can stand in for the receiver. Also, there’s the new Mac compatible software, Dexcom CLARITY. Here’s the great part: it works with Dexcom G4 and Dexcom Share. You don’t need Dexcom G5 to use Dexcom CLARITY. All you need is an account at Dexcom to download Dexcom CLARITY on your computer.

Information is power in the world of diabetes. Here’s the CGM data from the last two weeks.

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This is our best day; 74% of the readings were in range. On our best day we got a C-.

There are three common mantras in the diabetes world: numbers are just information, it’s never just a number, and keep calm and treat the number.

A few months after diagnosis, an adult friend with diabetes shared wise advice, “Never call a number good or bad. Just call it high or low.” We adopted this practice immediately, but are only now starting to see the reason.

Before programs like Diasend and Dexcom CLARITY, we looked at one number. If his meter said 70 we gave him a glucose tab or two. If his meter said 220 we corrected with an ezBG. Now we’re looking at aggregate data.

To keep our son’s blood sugar in range my husband and I have to work harder and more consistently on this than most of our daily tasks. We’re doing our best, so it’s easier to hear that he has, “significant time above the threshold from 9:50 p.m. to 12:20 a.m.” than, “those are some bad numbers.”

Right now, our best is a C-, but we have information we’re using to study for the test we’ll take in two weeks when we download the CGM’s data again. We have adjusted his basal program and decreased his bedtime snack bolus.

Here’s a question from next test:

Q. If a number is just information, what’s a gaggle of numbers?

A. Hopefully, a B-.

#DOCburnout2015: Looking Ahead to Diabetes Burnout

The kids are tucked in, the kitchen is cleaned, school lunches are packed, and my husband and I finally sit down to watch a T.V. show before bed. During the opening credits something beeps. We pause the show and listen again for the beep, which could mean a number of things: there’s only 10 units of insulin left in the pump, there’s an occlusion in the pump, our son’s blood sugar is rising (or falling) rapidly, he is high, he is low, something needs calibrating or is out of range, a battery is dying.

Sure enough, there’s the beep again. We look at each other, wondering who’s turn it is to address this diabetes need this time. Diabetes has a knack for needing attention at almost every inopportune moment and roughly every two hours during the night.

Our son is young, so right now we manage his care, and we’re his parents, so as any parent knows, the motivation to keep a kid healthy is a deep biological drive. If one of us could have Henry’s diabetes instead of him, we’d do it in the blink of an eye, but we can’t. Instead, we’re teaching him to manage this disease one task at a time.

We’ve only been living with diabetes for 18 months, and certainly we were scared that first night in the hospital, but not like we’re scared now.  Part of the reason we’re more scared now is because we’ve read stories in the Diabetes Online Community (DOC) that don’t end welll. We’ve done research and understand what the risks and complications are. We’ve tried to manage blood sugars and learned that sometimes no matter how diligent you are, a blood sugar cannot be controlled.

While there is a lot to fear when living with type 1 diabetes, the fear isn’t very helpful. My son is four. Do I really need to be worried about him driving a car right now when that’s eleven years away? It’s not useful to worry over potential line items on his 504 when this meeting is still a year away. And it’s not entirely fair to say the DOC creates fear. Sure, stories like Kycie’s and Will’s circulate, but these stories should circulate because diabetes is a serious disease. If we weren’t sharing stories like Kycie’s on the DOC diagnoses would be missed and efforts for standard blood glucose screenings wouldn’t be part of the conversation. If fear is a result of being part of the DOC, then so are solutions, better glycemic control, inspiration, and humor, and I’ll take all this over fear any day.

I can usually set aside the future fears and deal with the daily tasks, but one fear is more nebulous, and that’s the fear of burnout, a complete and total lack of interest, and investment in diabetes care due to denial or a set of complicated emotions. My husband and I can play rock-paper-scissors to determine whose turn it is to make the beep go away, but what will Henry do when he’s 15 or 18 or 20? I’ve heard and read testimonies of teenagers who completely disregarding their diabetes because if they don’t acknowledge T1D then that means it’s not real. And this is reasonable because teenagers are tasked with managing an unmanageable disease during a time of quick physical change and great social pressure coupled with needed independence from adults. Being a teenager with diabetes is like sailing into a perfect storm.

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Type 1 diabetes can’t be ignored, not even for a meal. It’s the long uphill trudge that I dread for Henry. The knowledge that to do almost anything he wants: eat a piece of cake, take a shower, turn a key in car’s ignition this means he always has to do something before. Strict attention and action will be required before the most basic tasks, tasks most of us do multiple times a day without a second thought. He’ll always have second thoughts. I hope the DOC is a place he’ll go to give and get some of these thoughts.