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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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.

 

 

In Diabetes Hacks We Trust

This was supposed to be another uneventful dinner at our local eatery, just me and my girl. As we sat down, V told me she felt low. Two things are noteworthy: 1) she’s just getting over a cold and her numbers have been crazy high past couple of days, but trending much better today, which actually made her BG more unpredictable, and 2) her Dexcom has been acting out and showing ??? or out of range most of the day.

She tested and her BG was 56. OK, no biggie, we are at a restaurant anyway. She asked for regular soda but I told her no, she would only be able to have a few sips anyway. We settled on one glucose tab to bring BG up just enough to be able to bolus for dinner, and she ordered a diet soda. Miraculously, at the same time Dexcom came back to life and started alarming us of the low. Yeah, thanks buddy, tell me something I don’t know, I told it. But I should not have been so short with it because of what happened next.

V guzzled down her soda, we ordered the food and she re-tested. 96 – BINGO. She pre-bolused for the food and got a soda refill while we waited for food to come out. About ten minutes later I noticed that Dexcom was showing BG of 110 and going up. How could BG have gone up that much already and still going up? One glucose tab was not enough to do this. If anything, since she gave herself some insulin but had not consumed any carbs, I’d expect her to be trending down. And then a suspicion hit me: did they refill her glass with REGULAR soda? Soda full of sugar? Because it would explain everything.

V drank just a bit of her refill, thankfully. She asked me to taste it. I can’t tell a difference between regular and diet! But then in a flash I remember reading about a diabetes hack that involved testing sugar in soda with a glucose meter. Instead of blood you put a drop of soda on the test strip. Regular soda will yield a high number. Diet soda will yield a LO reading or a meter error.

I whipped out V’s meter, fired it up and put the strip in a drop of soda. Aaaaaannnnd….Drumroll….

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OMG. She was drinking regular soda indeed. If we did not notice an upward trend and test the soda, this would have been V’s BG in an hour or so, and it would have been a monster to deal with.

I gave her a generous dose of extra insulin and we asked for a different glass of diet soda, complete with a clean straw. You bet I tested it when it came out. Meter error message confirmed it was diet. Whew. We carried on with dinner, keeping an eye on BG trends all the while. Afterwards we went for a nice long walk with the dogs. BG maxed out at 250. We can live with that!

Whoever came up with this hack, I can’t thank you enough.

 

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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Random, with a chance of foul language

No, not T1D, though it can definitely be that way…

My hubby asked me the other day if I was running out of ideas for this blog. Nope, plenty of ideas, but little time or energy to organize them. But then I thought, why not use this post as a giant dump of all some things T1D and gluten-free that have been occupying my head space for a while? So her we go, in no particular order.

Parental distress and T1D

In regards to the findings of this research study, which was the topic of another Insulin Nation article (not written by me): no shit Sherlock, T1D parents are stressed out. I think healthcare professionals forget about it so much that we need to have research from Yale to show them that it’s a real thing. But some parents were up in arms about the 33.5% average of people who reported distress. Only 33.5%?!

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An average can be rather useless. (Quick demo: you take a test and get a 10; I take same test and get a 90; our average is 50.) The researchers pulled and aggregated data from various studies that used widely different measurements of distress, from general parental distress to PTSD and clinical depression/anxiety. And the prevalence ranged from 10% to 74%. Most likely 74% reflects prevalence of more common and general distress, while the 10% is a figure more reflective of a clinical diagnosis. So the 33.5% means nothing, so let’s please not focus on it and instead focus on how to help T1D parents find the support they need, OK?

A recent gluten-free find that made me insanely happy:

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Refrigerated cookies ready to bake. Take them out, lay them on a cookie sheet, bake for 12-15 minutes. Perfect, easy, and so unbelievably good. Available at our local supermarket.

I made them for our fabulous New Year’s Eve celebration.

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I was going to take better pictures of these beauties but by the time I got around to it they were all gone. Eaten. Devoured. I got to inhale a few crumbs. Also, I’m too lazy to get off my chair now to look in the freezer, where we have a small stash, and look up the carb count. It doesn’t matter anyway, they are carb-worthy.

(Speaking of things that are gone… Remember my love letter to Trader Joe’s meat sticks? They had issues with supplier and no longer carry them, and may never ever again carry them. Which makes me really sad. Good thing we have these wonderful cookies to cheer me up.)

When there is a real problem with the pump

Like, when you put more air than insulin in the pod, and the pod does not realize it, and it keeps thinking it’s delivering insulin whereas in reality it’s delivering insulin-flavored air, this happens:

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Fortunately we caught on quickly enough and rectified the problem within hours. It involved changing the pod AND doing an old-school injection to speed up insulin delivery.

Ted Cruz, you are an asshole

And an ignorant one, at it. Let me be more specific: I am referring to his promise to remove gluten-free food from military, because it is just PC or a social experiment. Of course gluten-free is just a fad and the US military is trying to keep up with the Joneses. Headdesk. Facepalm. OMGWTFBBQ.

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Diabetes Awareness Month, Day 29

Today was the day I rage suspended. Yep, I’ve created a new diabetes term of endearment. Rage suspend is the opposite of rage bolus. It means cutting out insulin completely and for longer than one hour after relenting lows in an angry attempt to stabilize BG. It usually results in high BG a few hours afterwards.

We’ve had a few days on a low side. V has been complaining of some mild GI symptoms – tummy aches here and there, no appetite, feeling tired. When my child is not hungry you KNOW something is wrong. She is always hungry. And when she has any kind of GI upset her BG tends to crash hard. This time BG lows are mild and protracting, just like her GI symptoms. She’s been hovering around 60s and 70s, with a couple of dips into 50s and 40s. We’ve been having great difficulty bringing her above 90. We had her sip on Sprite quite a bit. Today Dexcom would.not.shut.up. It kept alerting and alerting and alerting. It’s set to alert at 75 so that we can be proactive about lows, even though we are perfectly comfortable letting her ride out the 70s as she feels quite good in the 70s range. But today she was dipping in and out of 70s so much, and Dexcom kept thinking she was mostly in the 60s. We made her drink more Sprite and eat more food. Good luck forcing food down V’s throat when she’s not hungry because she’s not feeling well. At around 4 PM I forced her to take a couple more bites and cried uncle. We suspended insulin delivery for 1 hr. After one hour was over she was still hovering in low 70s so I said what the hell, and suspended for another hour. BG finally started to climb up. So I guess mission accomplished? Except she’s still climbing up, 184 as of this exact moment. But I’m reluctant to give her insulin because I don’t want her to crash at night. Again. (Did I mention she was 40 last night at 11 PM?) Stupid diabetes. Damn if you do, damn if you don’t.

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