Time Flies When You Have Diabetes

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Craig: From Beta Cell, this is “Thicker Than Water.” I'm Craig Stubing.

One year, 365 days, four endocrinologist appointments, 36 Dexcom sensors, 1,500 shots of insulin. On paper, that's what a year with type 1 diabetes looks like. But it doesn't tell the whole story. There are a lot of things that happened that we don't have data for. The number of low blood sugars in the middle of the night, the hour spent on hold with insurance companies, trips to the pharmacy, every time we count the carbs in our meal right or wrong, how much we worry about the future, not to mention how much we worry about what we're doing right now.

A single day with type 1 can feel like an eternity sometimes. A year of it, almost too much to comprehend. That's exactly how long my Aunt Laura has been living with type 1 after she was diagnosed at 60 years old last year. Since our last episode was six months ago, it made sense on this anniversary to check in and see what's changed and what hasn't.

Happy dia-versary. We last had a conversation like this six months ago.

Laura: Time flies.

Craig: When you have diabetes?

Laura: Yes. It does fly by when you have diabetes and I'll tell you why. Because you used to be you only worried about a day go by, a week go by, a month go by. Now, I have a day go by, a week go by, and 10 days goes by for the Dexcom. We just flipped my dex, put it in a new one. I'm glad I liked him. We just do this.

Craig: Instead of weeks and months, you measure days by Dexcoms or measure time by Dexcoms.

Laura: Dexcom every 10 days.

Craig: I don't know, speaking of time, in the last six months, do you feel like things have changed much?

Laura: Six months, so that was August. Well, the only major change is that I figured out that I can't tolerate gluten. So that was huge because that changed my whole diet. That I had to learn how to get enough carbs through other ways, but I also then had to figure out what food I could eat. I couldn't just eat a piece of bread any more for 15 carbs. I had to find a gluten-free bread that I liked, that would be close to 15 so I could easily manage it and have a decent meal. Because I didn't want to have a piece of bread with 30 carbs because that's all I'm eating in a meal. I'd say the biggest thing was that it was like a whole new diet came in in August.

Craig: So pretty much six months in.

Laura: Yes, I knew something wasn't right. Since I'm a dietitian, I eliminated foods and then I introduced them back and I was just like, "Okay, it's gluten."

Craig: Has that made diabetes harder?

Laura: I tell people that the diabetes is easy. It's like gluten-free that's hard. Because at a restaurant, I can order off a menu and pretty much know this is so many carbs. But now that I have this gluten, I have to scrutinize every single thing that I order. I can't have gravy. I can't have a salad dressing on the side, and I usually ask-- Do real basic salad dressing because I don't want [unintelligible 00:03:52]. I don't order french fries because they're fried in the same fat as the appetizers that have bread crumbs. That's really limiting versus the diabetes.

Craig: One more thing to worry about, right?

Laura: Yes, just one more thing. It's not the end of the world. I'm not miserable. I'm okay. I'm able to deal with it. It just makes it so much harder when you want to go to somebody's house to eat. Think about it, if I go to a party, I have to think about what is it that they're going to serve? Should I take something with me in case I can't eat? Because I don't want to bring all my own food and I also don't want to eat at home. I've heard of other people, they just eat at home and don't bother to eat when they go to an event. Well, pardon me, an event is where you eat with other people. That's the part of the fellowship and getting together. I'm trying to navigate how do I deal with that?

Craig: The most exciting thing that's happened is you just started your own diabetes Instagram account, aunt1d_laura. Why did you feel suddenly a year into diabetes?

Laura: Part of it is me just wanting to help promote the podcast for you and what we did. I'm not selling anything. I'm not giving advice. Maybe just to talk about some of the things that I do, or I see. We've talked about some of my frustrations before about cookbooks or magazines that don't tell you the carbs and they'll tell you this. Labeling out, it's so hard to find the gluten-free label, can we put it in the same place? Little things like that, that can make our lives so much easier. I think I look at it as more of an education tool.

Craig: Using your knowledge as a registered dietitian with your experience as a type 1, and a gluten-free, or gluten-sensitive individual.

Laura: Right. I'm not going to tell people this is the way I eat and it's the only way I a type 1 should eat because I think every type 1 has to decide. Everybody's different. Their calorie levels are different. Their exercise is different. Their age is different. I think that's something that if you want to do something great, but this is what I do.

Craig: You're not doing this just to get free samples of food?

Laura: No. Free samples of food? I don't need any more food.

Craig: Your goal isn't to make some diet that you can sell people?

Laura: No.

Craig: Some broke program to reset your diet in seven days for $700?

Laura: No. What's interesting is when I was first diagnosed, and you did the podcast to me, and then several diabetics reach out to me, were nice to me and sent me things or very kind. When I had the gluten thing, both daughters reach out to people, and they gave me information about where to go buy gluten stuff, where to go do this, where to go do that. I think that's what I mean. It's like the support thing. I'm more into the support thing of helping people and saying, "Somebody recommended this really great app for me for gluten-free, and you should get it because it'll help you." Things like that.

Craig: Do you feel like, in these last six months, your feelings towards type 1 have changed?

Laura: Oh, I still don't like it.

[laughter]

Craig: Okay, that was the big question.

Laura: I'll never like it. It was really hard a year ago to think about what a year would be. You know what I mean? When you first get diagnosed, for me, it was, okay, I had to get through this day and then I have to get through this week, and then I had to get through this month. You're looking at it more in these little bits of pieces. Then I think once I hit six months, I was a little like, okay, I was getting a handle on it. We went through the whole seven stages in the last podcast. I knew where I was and then I got the gluten thing. It's like you took four steps forward and then three back when I got the gluten thing but now, I feel like I'm moving forward again.

I had to deal with this the rest of my life, so I feel like I do understand it much better than I did the first day I was diagnosed and probably even better than I did six months ago.

Craig: How did you celebrate your dia-versary?

Laura: My daughter got for me because I saw Trader Joe's had, I'll give them a plug, the gluten-free cupcakes. She brought me the cupcakes and then I lit the candle, and I ate a fourth of the cupcake. It was about all I could have with my carbs. That's how I celebrated. We went out to breakfast too because it was like an anniversary of our first date 40 years ago. So that was fun. We went out. It was the same time I did that, the same weekend. It was nice. What else do you do?

Craig: It's a weird thing because you're not sure if you're supposed to celebrate or mourn or ignore it. Mine came and went this year without any fanfare.

Laura: Did you forget about it?

Craig: No, I knew it was the day. I just didn't do anything or tell anyone. I just figured it's just another day.

Laura: Right. The first year, it was just like, [unintelligible 00:10:09] for a year ago. You think, "Oh, how am I ever going to do this? It's probably pride. I did go on that first trip to Arizona where you met us, where I could have bailed and I didn't. We've done other small trips so I've been doing that. I still did my walking. I still babysit, take care of my grandson. I'm still doing everything I always did. When you first get diagnosed, you think, "Oh, am I going to be able to do everything?" This was like a celebration of hey, the only thing that's different is the way I eat and I have to take insulin. That's not so bad.

Craig: It is funny hearing you saying that though thinking back on a year ago when you were much more anxious, I would say, than you are now. I don't know. Do you think having type 1 for a year has changed you in some way, greater than just what you eat and how often you go out to dinner and what you carry with you? Do you feel like you've changed or grown in some way?

Laura: I think I was always a nice, kind person but now, I try to be kinder, if that makes sense. To try to see that you don't always know what somebody's going through because outwardly, you wouldn't know what I'm going through if you don't see my Dexcom or if you don't see me take a shot or you don't even notice the way I eat if I order and whatever. I look the same. When you meet people, I realize even now more so, you just never know what's going on with them in their life, so I just want to be kinder and more patient.

Craig: I think that's good for everyone.

Laura: Yes, but I think when you go through something like this, it's good to think about what you're doing in this world and what you put out. Maybe that's why I did the podcast to just put out there, just say, "Hey, this is okay. It's a struggle but you can do it." Maybe me being a little more open to talking about it too because I wouldn't say that I would talk much about a lot of stuff. We are pretty private people but this, I just went out there and did it and I'll talk about it to people. If people ask me, I talk about it. I think that's changed in me and then I'm a little more willing to share some personal stories that I maybe never went off before.

Craig: To see those personal stories, follow Aunt Laura on Instagram at aunt1d_laura. There's a link in the show notes too.

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Craig: Thicker Than Water is a production of Beta Cell. As always, a very special thanks to my Aunt Laura. This amazing cover of Lean On Me you're hearing is by Nina Reganis. I'm Craig and this is Thicker Than Water.

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