Awareness, More Awareness…

Oh hi there! Come here often? I was totally shocked when I realized my last post was at the end of August. Has it really been that long? I guess I put a few things here and there on my FB page, but haven’t blogged in a while. November is Diabetes Awareness Month and in past years I’ve been blogging up a storm. This November I’ve stayed pretty quiet. I don’t have time or energy to post every day (or every month – HA!). I was not going to post anything today either but blogging material landed on my lap.

V’s diabeetus may have been feeling neglected, because just as World Diabetes Day got started on November 14th, diabeetus decided that we needed more awareness of it. To that end, Dexcom low alarm went off. And boom – one minute we are sleeping peacefully  and completely unaware, the other minute we are totally aware!

What a better way to mark Wold Diabetes Day than to battle lows in the middle of the night. (That was sarcasm.) Why was V’s BG so low? Diabeetus, that’s why.  According to all rules and logic it should not have happened. She went to bed at a solid 80 with no active insulin in her body and trend arrow holding nice and steady. She has walking pneumonia, which technically could have/should have raised her BG overnight, not lowered it. And in the past few days she’d been steadily going up overnight, even if she started with a good number before bed. We have not made any recent changes to her pump settings. We have not administered any insulin at bedtime. And yet, we had to pump her with four glucose tabs and suspend insulin delivery for an hour, and it took us about 3 hours to stabilize her BG and get it into a safe range.

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Over the course of 3 hrs alarms kept blaring. We kept getting up. V kept waking up. We poked her fingers multiple times. We could have given her more sugar right away but we did not want to over-treat and end up with an epic high, so we kept monitoring and doing it one step at a time. It was stressful and exhausting. Welcome to another night in our humble T1D adobe.

So why am I writing about this now, you may ask? Because I want to bring to light something that we don’t often talk about. What happened last night is great example of “shit happens, T1D edition.” People with diabetes have to face a lot of judgment. One reason for it is an assumption others often make that the person is doing something wrong: they are not eating well; not exercising enough or exercising too much; they are not following their doctor’s orders; they are not taking the correct amount of insulin. That surely there is a way to get BG under better control, to prevent most highs and lows, but the person is not making enough effort.*

Sure, there is always room for improvement and better glucose control. But what I want you to understand, really want you to understand, is that there are times when T1D makes absolutely no sense, follows no rules, and is completely unpredictable. Like last night, when it decided to act like a jerk, just because.

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The one thing I really want you to take away from this post on World Diabetes Day is that diabetes management has so many moving and unpredictable parts. Please don’t assume, never ever assume, that the person with diabetes or their caregiver are doing something wrong or not doing enough. And be prepared that if you ask me “why”, the only answer you may get is “diabeetus, that’s why.” Usually delivered with a shrug.

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*Disclaimer: People with Type 2 diabetes have it one hundred times worse when it comes to these types of judgments and assumptions. Sadly, sometimes it’s my fellow T1 peeps and parents who, in their defensive reactions of “I/my child did nothing to get T1D!”, throw fellow T2 brothers and sisters under the judgment bus. But that’s something to address in a separate post.

 

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Fully Loaded

The holidays are here and we are ready to eat all the things! Tomorrow we are having a Christmukah Eve potluck with our friends. Sunday we are having Christmas Day potluck with the same group of friends. Because why have one holiday meal if you can have two?

Last night we had company over for dinner, which gave us a good opportunity to do a dry run of holidays diabetes management. In line with how we handled Thanksgiving dinner last year, I decided to be aggressive with insulin and rely on Dexcom to monitor trends. I eyeballed the meal, overestimated the carb count, gave V a generous amount of insulin upfront, and spread out the other half of the dose over three hours. She wanted more dessert and we said yes, and gave more insulin. “Mom, do you realize I already have 11 units onboard?” “Yep. Give yourself more!”

All evening V’s BG stayed in the 130-180 range, which is fantastic. She gave herself some insulin before bed, which brought her into a nice low 100’s range for the duration of the night. It was a thing of beauty. This weekend’s goal: replicate this as closely as possible.

It was time to change V’s pod tonight. I was about to fill it with around 170 units of insulin, which normally lasts for 3 days with some extra to spare. Then I remembered about all the eating that will happen this weekend. For the very first time in three years of pumping, I loaded V’s pod with 200 units, filling it to the maximum capacity. Pod is fully loaded and we are ready!

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Wishing for good BG numbers this holiday weekend

 

 

Within Goal

Stay within the lines, the lines are your friend… Screw that, says diabetes…

Our lines are between 70 and 150. We try to beat diabetes into submission by forcing BG to fit between the two lines. Now, this range is rather arbitrary. 70 is fairly standard, as that’s usually the bottom normal for people without diabetes. Some people with diabetes actually feel pretty lousy in the 70’s, so they may shoot for a higher bottom target. V feels excellent in the 70’s, so unless she’s going down or running around/being active, we are perfectly happy there. 150 is a total crapshoot. People with functioning pancreases hardly ever get BG above 120, and that’s usually after consuming a massive amount of carbs. For us, getting through a day without going over 150 is almost unprecedented. It usually happens when V has some sort of GI upset, which makes her run low. So that’s not anything to celebrate or be proud of.

But rarely, very rarely, magic happens. (Full disclosure: we are going to pretend a little here, because at 11:30 V actually dropped below 70. However, my day ended at 11 and, after I snapped the photo below, I fell soundly asleep as soon as I hit the pillow. I did not even hear Dexcom alarm. Hubs got up to handle V’s BG while I blissfully slept through it all.) So, for all I care, March 19th was a perfect day with V’s BG staying within the lines.

Within goal: 100%

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When your kid has T1D…

When your kid has T1D, sometimes you stay up way past your bedtime because she’s low, and low again, and low still. Even after glucose tabs, followed by cutting the insulin, followed by gatorade, followed by cutting more insulin. And you know you’ll write about it in the morning, wishing you could give a better explanation as to why. Or any explanation, for that matter. Because who the hell knows why? And while you think about all of it you check your Starbucks balance because you know you’ll need something with an extra shot or two in the morning. And maybe in the afternoon too. And then you sit down and write a nasty-gram…errr… a polite but strongly worded letter to school officials who are thinking it’s a good idea to save some $ and replace school nurse with a health tech. You think about Flint, Michigan, but decided it’s too dramatic and drastic of a metaphor. You proofread multiple times because you don’t want the letter to read as a nasty-gram. You forget to make kids’ school lunches because you are all upset about the school nurse situation, Dexcom is blaring alarms every 15 minutes, and your brain is fried. You wonder how far Dexom will fly if you throw it. Then you remember how grateful you are to have this helpful technology, so you continue to love-hate it without physical violence. You think about laying down on your kid’s bed to rest but you can’t because the laundry is piled up high on her bed. And she is sleeping on the floor in a sleeping bag because of the laundry pile on her bed. You kind of laugh because it’s funny and absurd, and walk out of her room, only to come back two minutes later to silence Dexcom, again. After checking BG for the umpteenth time, you pump your fist when it’s 87. And you finally go to bed, way past your bedtime, wondering if a rebound high alarm will wake you up in the middle of the night, and you dream cruise ship wreck and coffee dreams. And when you wake up in the morning and write this, you’ve completely run out of f***s to check for spelling errors, so there may be some in this post. Don’t judge, OK?

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Diabetes Awareness Month, Day 12

Good sick day, bad sick day.

Well, there is no such thing as a good sick day. V has a cold. The combination of stress on the body, inactivity, and who knows what else, is not kind on BG. Yesterday was not too terribly bad, actually. Today, despite feeling better, BG decided to revolt and stay in high 200s and beyond most of the day. Stupid diabeetus.

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Diabetes Awareness Month, Day 6

Cross-posting from Facebook:

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It’s late, I’m tired and need to get to bed, so I will make this short and sweet. V had her Endo appointment today and her A1C is back to 7.0, down from 7.5. I knew her A1C would be better this time than 3 months ago but it was way better than I expected. And we heard the words “fabulous” and “great control” come out the Endo’s mouth. Happy Day! I’m totally using the occasion to recycle a photo from an old blog post.

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Behind the scenes of a brag

A few weeks ago I posted this bragging picture on Twitter

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I was very pleased with how we rocked BG management during V’s swim team practice, when she’s prone to going low. On a surface, it took a few simple steps: check BG, tweak insulin dosage a little and give her a snack. But come backstage with me. I will give you an exclusive tour of what it took on that particular day to get such a stellar outcome.

4:30 PM

I pick up V from school and we are driving to the YMCA. She checks her BG; it’s 216. “The pump recommends 1.65 units of insulin for correction”, she says. I mull it over and we talk about options. V is hungry and she typically has a snack before swim – usually a protein bar. If she boluses for her snack, she will have a lot of active insulin in her body when she is swimming and she will definitely go low. If she does not bolus for a snack, she may get too high and stay high. We haven’t yet pinpointed exactly what the threshold is.

I ask V to check if she already has any insulin onboard (active insulin in her body from a previous dose). She checks her pump and says that she does not. I ask her to look at her CGM and tell me what the trend is. CGM tells us BG is holding steady.

“What are you going to eat?” Normally I pack something but that day I completely forgot. I offer to buy her something when we get to the YMCA.

“Chips!”

“Yeah, right. No way. You need to have something that’s a mix of carbs and protein. How about chocolate milk?”

After some back and forth we settle on a yogurt, which is about 20-25g. of carbs.

“OK, let’s do this. Give yourself 1 unit. Don’t bolus for a snack.”

“But the pump says 1.65 units.”

“No, give 1 unit only. One unit brings you down about 60 points. (This is knows as correction factor and is different for every individual; V’s happens to be 60 points to one unit of insulin.) 216-60 = 156. It would be great to stabilize you there. The snack should help sustain your BG during exercise.”

V gives herself 1 unit of insulin and we keep on driving.

This is how the pump calculates the amount of insulin for correction

This is how the pump calculates the amount of insulin for correction: Current BG  minus target BG divided by correction factor. 

4:55 PM

We are at the YMCA. V quickly eats her snack. I glance at the CGM, she is still around 200 and steady. I have a spidey sense about it, I know she will go low even if she had a snack. I temporarily cut her basal (background) insulin rate by half for an hour.

5:00 PM

V starts her swim team practice.

5:30 PM

A routine check half-way through her practice. She is 98. Not bad but not great. Think about it: she started at about 200 and had a good snack. Half an hour later she is 100 points lower. She has 30 more minutes of intense practice and another 30 minutes of a private lesson. I give her a couple of glucose tabs to prevent her from dropping.

6:30 PM

V is done and wants to take a shower. She tests and is 82. Not bad. However, she says she is feeling borderline low. Or maybe she is really tired after 1.5 hrs of intense swimming? I ask her to sit it out for 15 minutes and re-test, and I have a spidey sense that her BG will level out and be OK.

6:45 PM

V says she is feeling well. She tests and gets a 53. What? Re-test, and now she is 85. We deem it to be an accurate number and I clear her to get in the shower.

7:00 PM

V gets out of the shower and CGM displays a perfect 100! She gets dressed and we head home.

Perfection!

Perfection!

7:40 PM

V tests before dinner. 103. We win at diabetes for once!

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V proudly displays her ribbons after her first ever swim meet. Our BG management during that day is a whole different story and does not deserve any ribbons.