Diabetes Blog Week Monday: Diabetes and the Unexpected

It’s time for 8th annual Diabetes Blog Week! Thank you Karen of BitterSweet Diabetes for putting this together.

I need this #DBlogWeek badly. I haven’t been blogging much lately. I’ve been overwhelmed by various things in my life and blogging/social media presence/diabetes advocacy has taken a backseat. I am hoping that this week will provide an injection of fresh motivation and inspiration.

Today’s prompt is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The best way to prepare for the unexpected is to expect it. Ideally, you become clairvoyant and can accurately anticipate all future problems. In reality, we all learn from our mistakes. The main lesson I learned (or rather am continuously learning ) from my mistakes is to not leave without any supplies that we cannot do without for more than an hour, no matter where we are going, how close to home we will be, etc. We always carry extra supplies with us, except when I get stupid and forget about this rule. Like that day when I took V to her Endo appointment and didn’t bring her diabetes backpack. And of course her insulin pump’s pod failed there. Thankfully they were able to hook us up with an extra pod and a vial of insulin, though for a few minutes they worried that they ran out of spare pods. Or the time when I took V to a traveling swim meet 2 hrs away from home and decided to leave her Zofran behind. Because why all of a sudden would she get a stomach virus? Of course, she was hit with the worst stomach virus I’ve ever seen, and we were stuck overnight in a hotel room in the middle of nowhere, with V violently vomiting several times per hour, hardly able to keep any liquids down.  And the battery in the ketone meter was dead! We narrowly avoided a trip to the ER, only because I was able to find batteries for the ketone meter in a store nearby and my husband was able to drive to us and bring Zofran.

Cue our last vacation. I wrote earlier about the hassle of packing all diabetes stuff, or “diacrap”, as Rick aptly suggested in his comment. I packed enough pods for daily changes. Of course, who would expect that a pod would fail every day? They are supposed to last at least 2-3 days. Nevertheless, I was not taking any chances. Sure enough, we had to change a few pods in rapid succession. One day involved two pod changes in 3 hours.

The truly unexpected part? One of the pods could not handle all of the vacation excitement and fell apart. Like, literally. It was quite amazing. These things are bomb proof. They are sturdy, waterproof, designed for all kinds of abuse, and if anyone ever tried to break one apart to see what’s inside, they will testify that it is not a simple tasks. And yet, while the bottom part was still attached to V’s arm via adhesive, this happened…
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What on Earth caused this? We have no idea. We are sending this pod back to Insulet for them to examine and figure out. Perhaps it could not handle the excitement of the FlowRider?

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And here is a close-up of what a broken pod looks like. You are welcome 🙂

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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

 

 

Sound of silence

V asked to take a little break from Dexcom. Just for a day or two, she said, and then we’d put it back on. It’s been two weeks and counting. Sometimes you don’t realize how much something affects you until it’s no longer there. This break is helping me realize that I have a major case of alarm fatigue.

These two weeks have been so much quieter. No more daily high and low alerts. No more waking up in the middle of the night to false alarms. No more buzzing and beeping in the middle of various activities. Mind you, there are plenty of other beeps that keep our senses stimulated. The “Beep Beeeeep, Beep Beeeeep” of the pod, one hour after we change it or a few hours before it expires.  Or the “Click Click Click Click Click STAB!” sound of cannula insertion. Or the “SCREEEEEEEAAAAAAACHHHHHHHHHH” song of its people the pod sang to us when it failed this morning. But those are far less frequent noises compared to the daily onslaught of Dexcom alarms.

There have been times here and there I really missed our “Deckie.” V was not feeling well for a couple of days last week and I wished I had the data to better fine-tune her basal rates.  There were a couple of nights we had to get up in the middle of the night and test, instead of being able to glance at V’s BG on our phones. There were several times it would have been so much more convenient to dose by Dexcom instead of having to test. And there were a couple of times I would have treated high BG a lot more aggressively had I had Dexcom trend data to inform me of how BG was responding.

Despite mentioning here and there that she wanted to put Dexcom back on, V does not seem eager about it, and we are not pushing. Truth is, we are enjoying the sound of silence. In the meantime, we are finding value in going back to basics, staying in tune with V’s body, letting go of micromanaging BG, and using our spidey-sense to make dosing decisions. Tonight V woke up, got out of bed and came downstairs to tell me she felt really low. Indeed, she was 44. Perhaps we would have caught it much earlier with Dexcom, but we caught it anyway, treated, and back to sleep she went. A few days ago, she was 56 after intense swim practice. It would have been so much easier if we could see her BG trend on Dexcom. But V asked me if she could wait it out a little and not treat because she felt OK and because her BG often tends to shoot up after practice. I agreed. Sure enough, 15 minutes later she was 65, and settled on a solid number in lower 100’s within an hour.

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No Dexom? No problem. She scores 100 anyway!

This break won’t last forever. V’s middle school sleepover is approaching in a few weeks and at that time wearing Dexcom will not be negotiable. We will take it one day at a time.  And maybe there is room for a compromise? We could turn off all alerts altogether and use Dexcom solely for trend data. Or we could change low alert from 75 to 55, and high alert from 225 to 350, in order to not miss more serious lows or highs. Or perhaps my alarm fatigue will be diminished so much that I will be ready to go back to our old settings and put up with the alerts in exchange for easier and more precise BG management.

This time will come soon enough. Today, I am letting go.

 

 

Diabetes Awareness Month, Day 27

I am pleased to report that this year we nailed Thanksgiving. It started with turkey. For so many years we kept over-cooking it. This year, with the help of a good meat thermometer, a LOT of butter, and more accurate info on when to pull the bird out of the oven, we ended up with a perfectly moist turkey cooked to perfection – dark meat and white meat. Nothing was over cooked and only a minuscule part was slightly over-cooked. Success!

But more importantly, we must have dialed up just enough magic to figure out carbs and insulin. It was very timely that I saw this article on diabetes and thanksgiving  in the morning and immediately decided that I was going to use the tips. Because we are not afraid of insulin, no we are not!

At the heart of Scott’s strategy was this philosophy:

I have two steadfast rules about managing my daughter’s type 1 diabetes. Read them, memorize them, live by them.

1. It is far easier to stop a low or falling blood glucose then it is to return a high blood sugar to a safe range. In my experience most low or falling BGs can be stopped and steadied in a short amount of time, maybe 15 minutes. A high BG can take 3 to 5 hours to return to a safe place. I’ll say it again. It is easier to stop a fall or a low then it is to effect a high. This thought guides everything I do with insulin.

I can’t stress enough how much it resonated with me. And yet times and times again we’ve found ourselves acting way too cautiously, fearing lows, not using our CGM to keep better tabs on BG trends. NO MORE.

Last night I checked V over an hour before dinner and gave her a correction to bring her to a lower range. Then I looked at our menu and honestly calculated carbs. In fact, I decided to round up and assume that high-fat things will be metabolized as glucose, so that virtually nothing was carb-free. I did the math and decided that 100 g. was a good ball-park number.

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I gave V her dinner bolus at least 3o min before dinner. She got 30% of insulin upfront and 70% spread out over 2 hrs, so that there would be active insulin in her system when all the delayed carb absorption started to happen.

The results were amazing. V’s BG stayed relatively steady. At some point after dinner and dessert I noticed that CGM was saying 91 and going down, so I let her have a small piece of candy. We had no lows and her BG topped at a little under 180! For us it is quite remarkable. Things were OK overnight, too. I gave V a small correction bolus before bedtime, and even though BG climbed up a little overnight, it again topped at 188. Typically, we’d be battling 200’s and 300’s and it was great to see V stay in a much better range.

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Now, this is definitely something to be thankful for!

Diabetes Awareness Month, Day 22

Today I’m going to re-post one of my old posts again. This one is all about pumping.  If you’ve been wondering about insulin pumps, what they do, what they don’t do, what V’s pump looks like, and how it works, this post is for you.

I am going to throw in a bonus photo. V had a swim meet today. I was helping with timing and it just so happened that she was in my lane. So I got a rare opportunity to be right next to her before start and snapped this photo, with her pump pod front and center.

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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.