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

 

 

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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.

 

Diabetes Blog Week: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Healthcare: The Good…

We are very, very lucky. Our healthcare experience has been overwhelmingly good. We have a wonderful pediatrician who was instrumental in V  getting promptly and accurately diagnosed with T1D. Our children’s hospital is outstanding and we received excellent care, support and education when V was hospitalized at diagnosis. V’s Endocrinologist rocks our socks. She listens, does not rush through appointments, answers all our questions, and treats us as equal team members. The Endo clinic has two dedicated pump nurses who are very knowledgeable, experienced, efficient and kind. We have very good insurance through my husband and so far experienced minimal barriers or delays in getting the supplies V needs.

Healthcare: The Bad…

The lack of understanding of T1D by many health care professionals (HCPs) outside of diabetes specialists that we encountered is appalling. So many providers have no clue. Like this very nice nurse as CVS clinic, who treated V not long ago for an ear infection. She was trying to assess if V’s BG had been over 200 that day. I’m pretty sure she was just following the protocol. I tried to politely explain that 1. It’s an extremely lucky day if V’s BG does not go over 200 at some point, and it’s totally normal, and 2. When she’s sick, her BG will run high no matter how aggressively we try to treat it. She told us that if her BG does not come down in a few hours we will need to go to the ER. Umm…No. Seeing that I was not going to agree to this plan, she stood down a little: “If it’s still over 200 in 3 hrs, you will call your doctor, OK?” I said “sure” just to end the conversation, and can we please deal with V’s ear infection now, thankyouverymuch?

Healthcare: The Ugly…

The initial expense of diabetes – the hospital copay, ALL the insulin and supplies at once, a million appointments in the early days, and pump and CGM copays a few months down the road – was a royal bitchslap to our finances. The year of diagnosis we reached the out-of-pocked maximum for the first time ever. The cost of insulin and test strips is absurd, even with our very good insurance. Between all necessary supplies, labs and quarterly Endo appointments, we spend a lot of $ on diabetes every year. But once again, we are lucky and privileged. We have good jobs and good insurance coverage. We can manage. Other people are not so lucky.

How is it that some people have to ration insulin because they cannot afford it? Or not have access to life-saving CGM because Medicare and Medical do not cover it? Or have constant battles with insurance because of ridiculous denials, delays, and screw-ups? It breaks my heart to hear stories about people’s struggles with diabetes because they do not have access to affordable, quality healthcare. It infuriates me when insurance companies create barriers to care and access and make medical decisions based on cost vs. scientific evidence and doctors’ recommendations. Nothing gets my blood boiling more than seeing companies put profit over patients’ health, and sometimes over their lives.

Healthcare: My Wish List

Non-diabetes healthcare providers: Please educate yourselves about T1D and the difference between Type 1 and Type 2. Basic knowledge will suffice, really. When you know about signs and symptoms of T1D and DKA, you can save lives. And if you don’t know much about T1D, please don’t tell us what to do. We can sort it out with our diabetes management team. Also, you need to trust our knowledge and expertise. Chances are we know a lot more about T1D than you do.

Insulin-makers: Get a grip on the cost of insulin. Yes, we understand you need to make money and make your shareholders happy. But you are holding hostage people who cannot live without the medication you make. And your profits keep going up while insulin costs are going up and people’s out-of-pockets costs are going up. There can be a better balance. Curb your greed!

Insurance companies: Don’t try to pretend that you are in it for our health. We are not stupid. But just like drug-makers, there can be a better balance between your need for profit and our need for care and access. Do not make medical decisions or deny access to coverage because you don’t deem it medically necessary – it’s up to our doctors to decide!

Medicare and Medical: COVER CGM. It is not only medically necessary, it can be life-saving, especially for seniors and children who are particularly vulnerable to dangerous highs and lows.

In the long run, everyone benefits from being healthy.

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Image used with permission from Laddie at testguessandgo.com

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 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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Diabetes Awareness Month, Day 28

Today I’m going to re-post something from last year. It popped up on my Facebook newsfeed. First, I laughed. Then I realized that I posted it exclusively on the Facebook page. So I’m actually going to transfer it here instead of simply linking to the Facebook post.

Diabetes Awareness Month, Day 28. I think yesterday we discovered the devil of Diabetes, aka the T1D equivalent of 666. But we were unintimidated and taught it a good lesson. Story in pictures below:

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Dexcom alerted us to a high. It does not read BG above 400, so this was bound to be interesting

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Behold the T1D equivalent of 666
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The logical course of action – exorcism! Exorcism here being defined as expelling diabetes devil via exercise.
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And it started working quickly…

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An hour and a half later exorcism was proclaimed to have been successful. See ya, devil. You are not a match for us!

I should add that of course some insulin was required to finish beating diabeetus into submission and bringing V into a healthy BG range, which was accomplished in no more than another hour. Without strenuous exercise it could have taken double that time to get BG under control.