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Audio Excerpt: The World's Worst Diabetes Mom

Diabetes Connections with Stacey Simms Type 1 Diabetes

Release Date: 12/11/2019

Minisode #9: Hey Doc! Listen up! show art Minisode #9: Hey Doc! Listen up!

Diabetes Connections with Stacey Simms Type 1 Diabetes

Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about? Full transcript below ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!        Episode Transcription:  Stacey Simms  0:00 This episode of Diabetes...

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Dexcom CEO Kevin Sayer Answers Your Questions show art Dexcom CEO Kevin Sayer Answers Your Questions

Diabetes Connections with Stacey Simms Type 1 Diabetes

This week, catching up with Dexcom CEO Kevin Sayer – overseas at the ATTD conference. We talk about everything from a G7 update, new partnerships, in-app notifications and those sensors that you’ve probably heard about getting stuck. We also talk about competition, customer service and a lot more. In Tell Me Something Good, a Miss America contestant with T1D has pretty stellar week – and it has nothing to do with her crown and sash.. this is about engineering . This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care...

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Minisode #8: When A Child With T1D is Afraid to Get Back in the Game show art Minisode #8: When A Child With T1D is Afraid to Get Back in the Game

Diabetes Connections with Stacey Simms Type 1 Diabetes

When a child is diagnosed with type 1 diabetes, most of the time the parents are told that T1D won't stop them. People with diabetes play sports, climb mountains, pursue acting and singing careers and much more. But what happens if a young child is scared to get back in the swing of things? Stacey has advice for a family she met whose little boy is so afraid of low blood sugar, that he's sitting out his beloved soccer games. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!          Episode...

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"Mastering Diabetes" Author Robby Barbaro Talks Fruit, Fat, & Insulin Resistance

Diabetes Connections with Stacey Simms Type 1 Diabetes

This week, a look at a way of eating for all types of diabetes that sounds – frankly – really hard to do. But the guys behind it say it’s the key for lowering insulin resistance for all types of diabetes. Robby Barbaro is the co-author of a We’ll talk about what he actually eats now and why he’s so passionate about this. He has a pretty compelling story. In TMSG – when an avid scuba diver is diagnosed with type 1, she finds a way to get back in – and under – the water. Plus, a little bit of a control iq update for us – we’ll tell you how it’s working out. This...

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Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin? show art Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin?

Diabetes Connections with Stacey Simms Type 1 Diabetes

Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs. Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Stacey also talks about what we can do about the price of insulin with founder David Mitchell and Lauren Stanford, the community organizing director. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!        Episode transcription:  Stacey Simms ...

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Ask The D-Moms: Driving, Independence and Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"

Diabetes Connections with Stacey Simms Type 1 Diabetes

Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit. In Tell Me Something Good, an amazing way to raise awareness.  We’ll talk about the .. and its’ going on right now. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to...

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Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle) show art Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle)

Diabetes Connections with Stacey Simms Type 1 Diabetes

Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this? Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind. ----- available to Diabetes Connections listeners! -----...

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What Is Monogenetic Diabetes & Why Should You Care? show art What Is Monogenetic Diabetes & Why Should You Care?

Diabetes Connections with Stacey Simms Type 1 Diabetes

This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed. We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about. In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career.. And what the heck is a diabetes merit badge? This podcast is not...

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Minisode #5 - Stop Posting Sick Day Photos of Your Kids! show art Minisode #5 - Stop Posting Sick Day Photos of Your Kids!

Diabetes Connections with Stacey Simms Type 1 Diabetes

Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress. What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids. Links referred to in the episode can be found in the transcription below. ----- available to Diabetes Connections...

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DiabetesWise - A Consumer Reports for Diabetes Technology show art DiabetesWise - A Consumer Reports for Diabetes Technology

Diabetes Connections with Stacey Simms Type 1 Diabetes

Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about from people who know it’s about more than the hardware. Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and  why it’s needed. Stacey spoke to Korey on a previous episode about diabetes gear and mental health. In Tell Me...

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Listen to an excerpt from The World's Worst Diabetes Mom: Real Life Stories of Raising a Child With Type 1 Diabetes!

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This chapter is all about using social media to thrive with type 1 diabetes. But of course, it's also about the many mistakes Stacey has made along this way. Hear the story of how she bolused her purse, instead of her child.

Read the transcript below

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Transcript of the excerpt:

"I think there’s an argument to be made that we can get more out of social media when we share our mistakes and worries than when we only post when things are going “right.” I know a lot of people love to share straight CGM lines and big and small victories, and that’s great. I love to celebrate along with you! But over the years, I find I have more of an impact and get more support when I pull the curtain back and show what’s not going right for us.

The first time I realized this was a scorching summer Saturday in 2010. Benny had just finished Kindergarten and Lea, 4th grade.  It was 101 degrees in Charlotte. I took the kids out to and then to a nearby splash pad. It was exactly what we needed and we spent the afternoon inside at home, trying to beat the heat.

The afternoon blood sugar check was a shocker: 500 BG. Big bolus, but an hour later Benny said he didn't feel well. At this check we got HIGH GLUCOSE! No ketones, thankfully, but something was very wrong. The meter remote was across the room, so I asked Benny to take his pump out of the pouch he wears around his waist. That’s when the problem became very clear. He had no pump to take out. Uh oh.

Even though the pump we used was waterproof, we usually took it off when Benny was in or around water. It wasn’t the rough play – the insets stayed on just fine for that kind of thing and the pump is durable. But Benny usually went low during swimming and taking the pump off helped keep him steady.

Note: this definitely depends on the person. As Benny gets older and bigger, the energy he uses for swimming and water play has changed. When you think about a 5 year old swimming, think how exhausted they get – they use their whole body every second! A 12 year old is still very active but might be throwing a ball in the pool and hanging out for hours rather than swimming nonstop for 30 minutes. We found as he got older, we needed to increase the basal rate for a couple of hours after swimming if we’d disconnected for more than an hour.

As I said earlier, check with your endo about disconnecting a pump and/or adjusting the basal rates on a waterproof pump or pod. Many people have also found success using long-acting insulin along with the pump (also called “untethered) or even switching back to multiple daily injections for vacations or summer if your child swims a lot.

Whether your child swims for ten minutes or ten hours, you do need to put the pump back on! We had forgotten that part. As soon as I realized that, I immediately remembered what I had done. We’d taken off the pump and thrown it in my purse. It was still there, just blinking at me and dripping insulin. All that time I was giving Benny insulin using the remote meter, I’d really been bolusing my purse!!

Once we figured that out, it wasn’t a difficult fix. We clicked the pump tubing back into the inset, did a giant bolus, checked ketones (nope) and refilled Benny’s water. I spent a moment wondering if I should wash my purse or just wipe it out. And if I’d ever get rid of the insulin smell. Ugh.

15 minutes later I grabbed the meter to see if the insulin had started working. Yes, I know it was too soon, but I was nervous and anxious and…. I dropped the meter. It slipped out of my hands, onto the floor and cracked. I have backup meters, but this was the brand new remote meter we’d only had for a month. After almost 4 years of pumping, we finally didn’t have to reach into Benny’s pouch to pull out the meter and could easily dose him while he slept. I didn’t have to turn around in the car while my husband drove and dig around in Benny’s car seat to bolus him for road trip car snacks! We loved that new meter. And now, it was all in pieces on my kitchen floor.

Talk about feeling like the world’s worst diabetes mom. My kid was high because of my doofus forgetfulness. Our brand new amazing remote meter was in pieces. Surely, no one was as horrible a mom as me.

I took my frustration to Twitter. If I tell you the responses were life-changing, I’m not sure that would be an exaggeration. Remember, this was back in 2010 when social media wasn’t was it is today. I wasn’t sure what I would get. Scorn? Judgement?

Turns out, all I received was support:

Here are some of the great responses:

@kellyemmaellisThe Party Wizards @staceysimms oh no simple mistake!! At least it can be

easily corrected with pump and Benny had been nice and active to take the edge off!!

@SweeterCherise Cherise/LADA @staceysimms hugs! How's he doing?

@DMomBlogLeighann D-Mom @staceysimms It happens. You realized it and are taking care

of the situation. He'll be fine. ((hugs))

@Kate_Ireland123 Kate Banks @staceysimms diabetes is 24/7, you are not. You can't be

perfect all the time. Its not your fault, you treated it, it's over :)

@PortblPancGrl Stacey D. @ @staceysimmsglad he's ok! And hope his BG gets back to

normal soon.

Other people had done this. Other people made it through. They said I didn’t have to be perfect and that Benny would be fine. It’s hard to describe how much better that made me feel.  I was still mad and frustrated, but I was no longer alone.

I think I was just as relieved to hear that Benny would be okay – that this had happened before – as I was to see these other women not judging me. Not shaming me. They didn’t share the post and invite others to pile on. Instead, they supported me. I didn’t know them but they were willing to reassure me and lift me up.

Of course, Benny was fine – his blood sugar came down, he was safe and happy and thought the idea of bolusing my purse was very funny.  I called Animas and they overnighted a new meter remote. Ours was still in warranty (barely out of the box) so they were fine with a quick replacement.

As you know, by now, this was hardly our first mistake. But it was the first time I remember admitting to one, publicly. It was incredibly freeing and it led the way for me to share more mistakes and missteps."

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