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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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.

2nd Diaversary: 731 Days of Living with T1D

I like my birthday less than I used to. Of course it still happily marks another year of life to celebrate with friends and family, but March 5th also marks the last day my son would ever not have type 1 diabetes. On March 6, 2016, my son has been living with (diagnosed) T1D for 731 days (there’s a leap year in there), roughly 37% of his life.

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Semisweet Soap (0 carbs)

We haven’t figured out how to mark or celebrate his diaversary, a neologism for the anniversary of a diabetes diagnosis. I think we’ll wait for Henry to take the lead on this. However, I’ve been reflecting on this upcoming date for a few weeks now. Moments like this are mile-markers because they disrupt the routine of counting carbs, insulin delivery, and correcting highs and lows. If I think about the preponderance of diabetes care all at once, it’s overwhelming, so the task-to-task perspective allows me to get up each day, put my boots on, and do it all again. Yet, around these mile-marker moments, I usually peek out the window at the vast appalling and inspiring mountain range that is T1D management.

On March 1st, I recorded all my actions related to T1D care. Here’s one day of T1D care. It’s only one day. Some days are better. Some days are worse. We’ll do it all again tomorrow.


KEY

basal= background insulin being delivered by pump

bolus= a larger amount of insluin delivered at meal and snack to cover carbs

BG= blood glucose

CGM= continuous glucose monitor, provides an estimate of Henry’s blood glucose every 5 minutes

Dexcom Share allows us to see blood glucose values on our phones

ezBG= pump function calculates how much insulin to deliver to correct a high BG

IOB= insulin on board, the amount of insulin that has been administered and is still circulating


12:03 a.m.- check BG by blood, 74 with an arrow down to the side, half a juice box

2:00 a.m. – wake up to alarm, check BG on CGM, 147 with an arrow straight across go back to sleep

5:00 a.m.- wake up to alarm, check BG on CGM, 220 with an arrow straight across, so check BG by blood, it’s really 309, give 1.25 units of insulin, go back to sleep

7:00 a.m.- wake up to alarm, check BG on CGM, 137 with an arrow down to the side, so I get ready for work

7:30 a.m.- check BG by blood, 130, while Henry is still asleep, prebolus 1.5 units of insulin for a breakfast of 25 carbs

7:35 a.m.- help Henry get dressed so that the pump and CGM sites stay secure

7:55 a.m.- Henry eats breakfast, a low carb, sugar free muffin and a scrambled egg with cheese

8:35 a.m.- check BG on CGM 107 down to the side, get d-bag ready for school

9:05 a.m.- drop Henry off at preschool, get CGM on Wi-Fi, check BG by blood, 210, give .15 units of insulin to correct high

9:15 a.m.- listen to a diabetes podcast during morning email and class preparation

10:08 a.m.- text from Henry’s preschool teacher/s: Did another ezBG, I look at BG remotely, 320

10:59 a.m.- right before teaching, look at BG remotely, still 320

11:17 a.m.-text from Henry’s preschool teacher/s: We did another ezBG at 10:30 and it gave another .3. He had 1.07 IOB at the time. 

11:45 a.m.- Husband calls during class, saying he went to check on Henry, who has large ketones. Pump said to give 6.6, but this would be way beyond the most insulin Henry’s ever had at once, and it made my husband nervous, so he gave Henry 5.6 units of insulin to correct for large ketones and cover his lunch of grilled cheese and tomato soup. 5.6 is the second highest amount of insulin Henry’s ever had on board.

12:01 p.m.-look at BG remotely, 329 with an arrow up at the side

12:15 p.m.- listen to voicemail from drugstore about prescription problem with test strips

12:45 p.m.- while on a way to a meeting, read text from husband: I called the school and told them to go ahead and give the additional unit I was worried about, look at BG remotely, 363 with an arrow up at the side

1:15 p.m.- during meeting, unsuccessfully try not to think of Henry’s ketones and blood sugar

1:53 p.m.- text from Henry’s preschool teacher/s: We gave another unit and are continuing to push water. Will have cheese stick and beef stick for snack, husband texts back and asks that Henry be given 1 additional unit of insulin to help clear ketones.

2:30 p.m.- look at BG remotely, 263 with an arrow straight across

2:33 p.m.- look at BG remotely, 260 with an arrow straight across

2:38 p.m.- look at BG remotely, 260 with an arrow straight across, realize I have to stop obsessing and get some work done

3:08 p.m.- look at BG remotely, 141 with double arrows down, which means Henry’s BG is falling faster than 3mg/dL per minute, text to his teacher/s: Now he’s falling fast! What’s his real BG and how much IOB? 

3:16 p.m.- look at BG remotely, 111 with double arrows down, call classroom and talk with student worker who tells me that IOB is 1.16, I tell her to give Henry 2 glucose tabs, text husband this information

3:25 p.m.-look at BG remotely, 95 with double arrows down, I tell myself I am a logical person, that the sugar will do its job and the CGM is lagging, so he’s probably leveling off, not spiraling down

3:29 p.m.- text from Henry’s preschool teacher/s: 97 and .92 IOB, gave two tabs 15 min. ago, CGM says 84 with double arrows down

3:58 p.m.- look at BG remotely, NO DATA

4:16 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across

4:31 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across, then Henry walks through the door with his papa, who said his BG by blood was 112

4:46 p.m-. my phone buzzes with a Dexcom alert, I don’t check, knowing it’s still catching up form the fast drop

5:40 p.m.- check BG by blood, 95 and prebolus 1.4 units of insulin for a dinner of 40 carbs

6:10 p.m.- during dinner my phone buzzes with a Dexcom alert, CGM says BG is 74 straight across

7:00 p.m.- check BG on CGM, 121, an arrow straight across

7:28 p.m. – help Henry change out of his clothes and into his pajamas to preserve pump and CGM sites

7:32 p.m.- check BG by blood, 111, give .55 units for a high protein bedtime snack of 11 carbs

7:40 p.m.- add some new basal times and programs to avoid nighttime highs, which have been more or less constant for the past few days

7:56 p.m.- check BG on CGM, 160, an arrow straight up

8:56 p.m.- check BG on CGM, 157, an arrow straight across

9:32 p.m.- check BG on CGM, 134, an arrow straight across

9:46 p.m.- silence reminder alarm from pump to check BG 2 hours after insulin delivery

10:10 p.m.- check BG on CGM, 181, an arrow straight across

10:39 p.m.- check BG on CGM, 177, an arrow straight across, decide to check BG by blood, 209, give .7 units of insulin

11:32 p.m.- check BG on CGM, 168, an arrow straight across

11:42 p.m.- check BG on CGM, 158, an arrow straight across, set alarm for 12:40 a.m., 3:00 a.m., and 6:00 a.m.

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today 

 

 

Diabetes & New Year’s Resolutions

I really enjoy the first week of the new year. The glut of the holidays is packed away, and while there’s reflection on the past, there’s more focus on the upcoming year. I work in academics, so the semester has yet to start, and our small town is usually covered in about a foot of snow. It’s quant, so this seems like the perfect time to reflect and plan. However, I’m not someone who makes New Year’s resolutions. In general, I believe that if there’s something I want to change or start, any random Thursday is just as good as New Year’s.

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a new year walk in the snow

Yet, type 1 diabetes has made me reconsider many assumptions and mores. The possible wisdom in establishing some resolutions at the start of the new year is just one of them. On her blog, Inspired by Isabella, T1D mom (and mother of triplets!) Kristina Dooley, wrote a post called “Losing Sight” that bravely discusses some of the biological stressors of being a T1D caretaker to a young child. Almost two years into the life of a d-mom and I can feel the effects of chronic sleep deprivation: foggy thinking, an increasing obsession with coffee, and higher stress levels.

Diabetes (both 1 and 2) is insidious for hundreds of reasons, but at the start of the new year, it seems that T1D is particularly cruel because there’s never a chance to regroup. Once that medical professional says “your child has type 1 diabetes” there’s no off-ramp. Instead, the person living with T1D, and to a smaller extent, his or her family, is running a marathon. For life.

We’ll look for the shady spots, like a three hour window with in-range steady blood sugars.

Maybe the start of 2016 is another good moment to rest. We don’t have much time before we’re back in the slog, so I think a few resolutions might help reframe our 2016 leg of T1D marathon: more protein, more sleep, and less worry about what’s beyond our control. On second thought, these are pretty lofty goals. I’ll settle for more sleep.

#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.

DOCBurnout2015

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.