Forty Days of Diabetes - Day 31

5:15am and diabetes has already reared its ugly head, interrupted her sleep. I check her every morning when I wake up. She sleeps through it and I get to poke the fingers she avoids so it's a win-win. If she's high it's an easy fix. Her pump does the math and delivers her correction dose at my prompting. If she's low she has to eat. As delicious as candy and cookies are it's a rude awakening when it's being coaxed into your mouth at the crack of dawn. She's mastered the art of "sleep eating" so it's usually uneventful. I feed her 15g of carbs, she goes back to sleep, I recheck in 15 minutes and treat again if necessary.

If she's very high it sets off a series of unfortunate events. Troubleshooting begins; did her site fail, dose she have ketones, is she getting sick, did we forget to bolus for something last night? Check her blood sugar again, check for ketones, do the math and give a subq injection of insulin, prepare new pump site, pull off old pump site, apply new pump site and auto insert it. That's 5 needle sticks before her feet hit the floor. And if we're very lucky she sleeps through the whole thing. But more often than not she's awake by poke number 3 and very unhappy. 

So imagine for a moment being snuggled up in your nice warm bed when someone sneaks in and starts poking and squeezing your fingers and sticking your abdomen or the backs of your arms with needles. And imagine having to live with this for the rest of your life.

We need a cure.

Forty Days of Diabetes - Day 30

Caitlin's blood sugar is 179, she has 1.75 units of active insulin on board, she ate a protein bar with 25g of carbohydrates 2 hours ago, she's getting ready to eat 1 slice of pizza, a small apple, and 1 cup of milk. Her insulin to carb ration is 1:20 for lunch, her target blood sugar is 120, and her correction factor is 1:75. She's going to run the mile in gym after lunch and is coming down with a virus.

This is a ridiculous amount of information to have to process just to eat lunch. But why is it all important? Because accurate carb counting and insulin dosing are the only way to maintain control of blood sugars.

Every person with T1D works tirelessly with their endocrinologist to come up with a plan that works best for them. We meet with our team every three months to review numbers and tweak what needs to be tweaked. We have target blood sugars for different times of the day, higher during the night to keep her safe wile sleeping. Insulin to carb ratios to mimic the human pancreas; she needs far more insulin for her breakfast than at an other time of the day. And a correction factor which is how many points her blood sugar will drop from 1 unit of insulin, 1:75 for Caitlin.

But why is all the other information important? That  she has insulin on board, had a snack, is going to run, is getting sick? Because it's not just the math. A number of other things must be factored in as well. Active insulin must be subtracted from her correction and lunch bolus to minimize the risk of "stacking insulin" and causing a hypoglycemic event. Has she fully digested her protein bar yet? Protein slows absorption of carbs and can enter the bloodstream up to 3-4 hours after eaten. This in turn can cause a hypoglycemic event, because the insulin acts before the food absorbs, followed by a hyperglycemic event. And strenuous physical activity drops blood sugar while illness raises it. 

The pump does the math, thankfully. Calculates the IOB (insulin on board), I:C (insulin to carb ratio), CF (correction factor) but the rest is up to us. And up to her when we're not with her which is happening more frequently as she gets older. Sometimes we nail it and other times we fail miserably. 

So the next time you belly up to the buffet try eyeballing the foods you're loading up on and carb counting them. Then think about fat, protein, and fiber content and try to guess how long it will take your body to absorb them. Three years ago a buffet would have terrified me. Now? Challenge accepted!

Forty Days of Diabetes - Day 29

Diabetes - The Toll it Takes

Her school trip is approaching. Something the kids get excited about years before they go. Planning what they'll bring, who they'll bunk with. It's been on my mind for nearly as long. Three nights and four days away from home. She's been away longer than that before. It's not the duration of the trip I'm worried about. It's her first time away with no one familiar caring for her diabetes. I didn't think it was on her mind. It's a grown-up worry, not for her. Until she told me last night she didn't want to go. I knew why, she didn't have to say it. And my heart broke a little bit for her. I realized that although she rarely complains about diabetes or makes it seem like a big deal, that it does take a toll on her. That it wears on her and chips away at her innocence a little at a time.

In her world of school, trips to the mall, and sleepovers her diabetes is hers. Her friends and classmates get a very small glimpse of what it entails. They know she can snack in class, carries extra stuff with her, stops at the nurses office before lunch, most don't even know why. Only her closest of friends have ever seen her check her blood sugar or even take her pump out to bolus. It's transparent. At camp it won't be so simple. There are tasks that must be preformed. Bedtime checks, pod changes, maybe even a nighttime low that will require treatment.

She'll go on the trip. I know she does want to go. She's a social butterfly and it would kill her to miss it. I know she's in turmoil, as I am, about how she's going to manage. But we'll figure it out. We always do. Because she has diabetes but I will not let it have her.

Forty Days of Diabetes - Day 28

A Typical Day

I've said it before, diabetes is hard. Not just the constant monitoring, poking yourself with sharp things, and monotony of it. But because it doesn't play fair. You can do and eat exactly the same things and treat exactly the same way 10 days in a row and get different results every single day. And just when you think you nailed something, like how to bolus for pizza, diabetes says F you and everything changes.

The picture below is a "typical day". As typical as it can be, anyways. It doesn't include failed pump sites, sick days, middle-of-the-nights highs and lows, the "what's-that-on-your-arm?" questions, the "my cat/grammy/uncle/pastor had diabetes" comments, the "have you tried changing her diet?" questions, and so on.....

Try setting your phone alarm for every one to two hours and then pause for a few minutes to think about what you ate, did you count your carbs properly, did you remember to bolus, do you have enough supplies with you, do you feel high or low, is your pump site working, are your batteries dying in your pump/meter, does your pump have enough insulin in it for the rest of the day? Now do that along with all your other responsibilities and make it appear effortless. And imagine doing that at age 8, 12, 16, and forever for the rest of your life.

As many as 1.25 million Americans are living with T1D including about 200,000 youth. 40,000 people are diagnosed each year. Between 2001 and 2009 there was a 21% increase in prevalence of T1D in people under age 20. 5 million people in the U.S. are expected to have T1D by 2050, including nearly 600,000 youth.

WE NEED A CURE.

Forty Days of Diabetes - Day 27

Two Years of Pumping

This popped up on my Facebook timeline this morning. Ten-year-old Caitlin looking so brave sporting her Dexcom continuous glucose monitor (CGM) sensor on the right of her abdomen and her T-Slim insulin pump site on the left. This was her first day using her pump. It was filled with saline so we could get used to it before going live with insulin. I still remember my hands shaking putting that first pump site in. And the tears. Mine and Caitlin's!

Two years have gone by and a lot has happened. Caitlin developed a severe allergy to the adhesive in Dexcom sites, we struggled with pump sites for the T-Slim. She hated the one we liked, we hated the one she liked. We went with her choice, of course. And then the Omnipod tubeless pump came along in August which we all love.

TWO YEARS + 5,300 FINGER STICKS + 400 PUMP SITE CHANGES + A HANDFUL OF INJECTIONS WHEN NOTHING ELSE WAS GOING RIGHT = WE NEED A CURE!!!

Please consider a tax deductible donation to JDRF and help us turn Type 1 into Type None. Click on the link below to be directed to our walk page. Thank you!

JDRF One Walk

Forty Days of Diabetes - Day 26

Diabetes is a Team Sport

Burn out in diabetes is a real thing. For the person with the disease and their caregivers. It's an endless cycle of test, bolus, eat, repeat. It becomes second nature but at times can feel overwhelming. 

Children who are given too much responsibility at too an early an age are especially prone to it. I once read that letting a child manage their own diabetes care is akin to allowing them to manage the household finances and investment responsibilities. Except poor diabetes management has the potential to cause serious physical harm. 

We take a team approach to diabetes care in our home. We share responsibility for checking, counting carbs, changing pump sites, etc.. Dave and I take turns getting up for night checks, staying home with her on sick days, and strategize on how to keep her life as normal as possible. The control-freak in me maintains full responsibility for materials management and scheduling but nobody is fighting me for that title. 

We're the lucky ones. Too many families are divided on this front. Expecting too much from their children, challenging one another on proper care or just taking a complete hands-off approach and placing the entire burden on one parent. 

Having a supportive spouse, family, friends, and school makes it all that much easier to play with this crazy hand we've been dealt. 

Forty Days of Diabetes - Day 25

This is What High Looks Like

Do you feel high? Words I mutter to her often. Not something I ever thought I'd be asking my little girl. 

Diabetes is cyclical. It ebbs and flows and just when you fall into a comfortable zone of in-range-numbers and uneventful days it smacks you in the face. After weeks of freakishly good blood sugars we've been struggling to keep her under 300 for days. We go through the process of elimination. Is her pump site good, did the insulin go bad, did our carb counting go horribly wrong? But it's almost never any of those things. It's just diabetes being a pain in the ass. 

It's usually related to an impending illness or growth or puberty hormones. Things completely out of her control. This leads to missed classes, extra time spent in the nurses office, and Caitlin feeling generally horrible. Not just because she's getting sick or her numbers are high. But because she takes the numbers personally and feels guilty when she's out of range. As if she has any control over it. 

Last night's dinner reading threw us both for a loop. We both stared at the screen with eyes wide. HIGH? As in, so-high-that-I'm-not-even-going-to-give-you-a-number, high? We go through the motions. Was your finger clean? Let's check again. Do you have ketones? Let's check. Three finger sticks, one subq injection, a changed pump site, and one little girl whose spirit has once again been broken by diabetes. And what goes up must come down so a day filled with highs is followed by a night full of lows. So we hang out and snack at 10pm checking and waiting until we're happy and safe. And then the rat-a-tat-tat at the door comes at 1am. "I'm 55." And the cycle of eating and checking begins again.

Diabetes is hard. But most days she makes it look easy. I carry her worry and fears for her while she goes about her business of being a carefree twelve-year-old girl. And I will carry that for her as long as she'll let me because she has more important things to focus on. Like fun, and friends, and school, and boy-bands.