Loosening Up

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

There was a study that showed that people with Type 1 diabetes make an additional 180 decisions every day, that someone without Type 1 doesn't have to make. Let's say you want to go for a morning walk. You have to stop and think about what your blood sugar is, and how far you want to walk. Then you think about if you need to eat something, and then what you should eat. Then you need to factor in if you have insulin on board already, and if you should change the basal rate of your pump. If it's the morning, maybe your dawn phenomenon is kicking in too. On and on adding little inputs to a complex formula to keep us alive, and that's just to go for one walk.

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It's easy to imagine how little decisions like those can add up all day. For for me, having Type 1 diabetes makes me really love routines. If I eat the same breakfast, at the same time every day, I know exactly how many carbs are in it, and how much insulin to take. I've just put a bunch of decisions into autopilot. Now when I wake up in the morning, I basically don't have to think about diabetes at all. It's no different than knowing I'm going to brush my teeth or put on pants. Humans aren't machines, if every day was the same, I would never see my friends, never go out on the weekends, never eat pizza and ice cream. As the saying goes, variety is the spice of life.

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To be successful with Type 1, you have to figure out how to manage the stuff outside of your routine, the unknown. The stuff that makes life fun, but when you do that spontaneous stuff enough, adapting the changes becomes routine too. Today on the show, we check in with Aunt Laura again, and see how she's been loosening up, just a bit.

Hey, it's been a while.

Laura: Yes, it's been a long time.

Craig: I did the math and you've had Type 1 for 576 Days. 1 year 6 months 29 days.

Laura: This is a good time to do it because it's like a year and a half, right?

Craig: Yes, so the last seven months, I guess, have been a little different than the first year. How has the pandemic been treating you?

Laura: First, the pandemic isn't fun for anybody, but then when it first started, there was that huge warning for diabetics. I took that really seriously, and was so worried about everything. Like I didn't go to the grocery store. I didn't do a lot of stuff, I only saw my husband who is still working, but the change for us in there was he's now working out of our house, and one of his colleagues comes to the house every day because that's what they do. Making sure that his colleague is safe from us, and then I'm safe from him, so that was a whole change. Then when things got further along and we realized we just need to be very cautious, I went back to taking care of my grandson one day a week, because their family has a very small circle of people. We're trying to just be, I'd say, I'm just trying to still be very cautious and limit who I spend time with.

I don't spend time with people who have been out, or go to restaurants, or do things like that, but otherwise, the summer went by and we didn't get to do anything, which stinks, because here in the Midwest. You only get so much time. Now I'm thinking if this is going to be all winter, it's going to be a long winter.

I understand people who have quarantine fatigue, and are loosening up, but we don't want to loosen up too much because I still think we're vulnerable. I'm in the age-group that's a little more vulnerable, I have the diabetes. I just keep thinking you pay the price now, it will end one day, but we just have to wait till we get the vaccine or whatever.

Craig: Do you think that six months into this your less nervous than you were at the beginning?

Laura: Yes, I think so. It still hangs over your head, that if you get it, what would happen to me. Would I get really bad, or would I be fine? Because my diabetes is well controlled, so it's not like I'm vulnerable because I haven't been taking care of myself. Hopefully, if I did get it, and who knows, I could have already been exposed to it, because I'm not testing. You just have to look at it as living your life, but being cautious.

Craig: Has being stuck at home changed diabetes management for you?

Laura: No, I've been pretty much the same. I would say I probably went through some of the things some people went through, where you would find yourself wanting to snack on something, just because you're stuck here, but I limited my snacking to things that were not going to be high in carb, anyway. Like nuts, cheese, things like that. I would just say that was maybe I had a little bit of that at the beginning, but after we hit spring, where, at least, you felt like you could go outside a little more, then that got better.

Craig: You literally just came back from the endocrinologist. What did they have to say?

Laura: This is the thing, my endocrinologist that I started with has now left the practice, and she is moved to a new location, so I had to change endocrinologist. Today was my new endocrinologist, who I like a lot. He was very thorough, but has some different philosophies for me now moving forward with the diabetes.

Craig: What kind of philosophies?

Laura: He now feels like I don't need to be so restrictive, and he wants me to loosen it up a little. [chuckles] Especially since I know how to count carbs, now he's saying that I can adjust it as I eat, and I'm not going to go whole hog and go 100 grams or whatever. I'm pretty much going to probably stay around where I am anyway.

I also asked him about sifting, because I haven't taken insulin between meals in order to have a snack, and he totally was like, "Eat a snack. If you're going to have 15 carbs, take a unit of insulin." That frees up my eating pattern a little bit. I don't feel like I'm really going to go crazy, but he did say to me that looking at me, I'm not the typical patient. Which I adjusted as meaning, I count my carbs, I eat pretty much at the same time every day, unless I'm traveling or it's in a different event. Because my control was so good, he felt like I can now just be a little more loose with adding some carbs to my diet, which is nice.

Craig: Yes, you're very by the book. When Your endocrinologist said 30 grams of carbs, three times a day, you followed that to a tee, but I imagine there's some, because I feel the same way. There is some comfort in the regimen, like knowing, "Okay, this is what I'm going to eat. This is what I'm going to do, and not really having to worry about, am I doing it right? Did I change things up?" At the same time, you don't want to feel like if you want to go out to eat, that you didn't have to do it at a certain time, or if you wanted to have a late lunch, or if you want to a brunch, combine two meals in the one, without just eating 30 grams of carbs, now you feel like you can do that.

Laura: Right. My husband and I were talking on the way home, I think because I was new to her, she treated me like a new patient where she was going to get me into that mode of understanding insulin and carbs, and how they relate, and how do you take care of that. Even though I'm a dietician, I still had to learn that, because it's different when you're doing it. That was good, but I think it was nicer. Now, I'm at the next step of him saying, "Okay, you understand it. You've got it. Your A1C is fine. Everything's fine, so I just want you to go ahead and feel that you can do this."

He also changed my Pensacola, instead of having five units a night, now he's cut me back to four.

Craig: Oh, wow.

Laura: The other thing I'll tell you that he's going to do that was new for me, he wanted to instruct me on how to adjust if I go too high, which I've never gone to 300 in all this time. He wanted me to have that ability to adjust. He's now putting me on the NovoLog Pen Echo where it's a pen refill, and I can do half units. We'll see what the insurance pays.

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That's the big question.

Craig: Do you feel excited to have this newfound freedom?

Laura: You know what? I was talking to your uncle about this. Again, I don't feel like I've been hugely deprived. I think part of the issue is with being gluten-free, I can't snack on a lot of stuff. Do you know what I mean? I guess now, if I want to have a snack with my grandson in the afternoon, if I plan for it, then I could go ahead and have a gluten-free cookie at the same time, or I could have, like I said, if I go to a party and it's in the middle of the day or afternoon, then I know if there's appetizers, I can go ahead and have one unit. That makes me feel there's a little more flexibility and that I can do that because I wasn't doing that. It just wasn't a part of what I do.

Craig: I know it was always a bummer on holidays or special occasions when you felt like if you want to have a piece of cake, you couldn't eat anything else

Laura: Right. Now, it's going to be a big learning curve for me because I bake some gluten-free stuff. Say, I make gluten-free banana bread and I say, "Oh, well, I can eat that banana bread mid-morning if I want to have a half a piece." I'm going to have to figure out because I use sugar. I don't use a lot of sugar substitutes, that's going to be a learning curve for me is how do I do that. Even for ice cream, I haven't had it. That's going to be a learning curve of how does that affect me with the fat and gluten?

Craig: You haven't had ice cream in a year and a half?

Laura: No.

Craig: Really?

Laura: I get a taste of it. I love Trader Joe's has little frozen chocolate-covered banana slices. You've ever had those? Those are great.

Craig: Well, are you going to start experimenting them just to see if it works, and then you can report back?

Laura: I might just add like at lunch, if I could have a sandwich with something else, then I don't really think I will have as much of a feeling of-- Sometimes I just felt hungry and it wasn't associated with a high or low. It was just I feel hungry. I would eat peanuts or cheese. This way, at least, I can say, eat a little more at lunch maybe and then decide if I still want a snack I'm able to do it.

Craig: There's only so many nuts and cheese someone can eat to fill themselves up.

Laura: Well, that's what I mean. It's like, "Urgh." What else can you eat? Meat? I'm not going to do that.

Craig: Beef jerky?

Laura: Yes, that'd be beef jerky. All those things are high in sodium and stuff because I'm also trying to make sure I don't get too much salt, I don't get too much cholesterol. It's all these things that you have to balance.

Craig: After this appointment, do you feel different at all?

Laura: I think, one, it was good. I think, sometimes it's good to have a different opinion. I was with one endocrinologist for a year and a half. Now I'm with a new endocrinologist. They have different philosophies and then I think it was just good to be reassured. Another endocrinologist felt I was doing well, that I was on track, that not that you need to be patted on your back a lot, but you'd like to hear that what you're doing is correct, and there's no red flags anywhere about anything that you're doing.

Then the fact that he's loosening it up, I'm going to be cautious. That's just the way I am, but I feel more comfortable now. I think now maybe it's a better time to start doing that. I wanted to do that six months in.

I think maybe feeling like I understand how this all works in the little ways, you can understand how this all works, probably helps bring it together. I think anybody who's newly diagnosed, the hardest part is see what you're going to be like in a year or in two years. I think you have to just realize it's just going to take time and patience and it's a learning curve. Even then, you still don't know why something's happened, even after 20 years. [chuckles] He's still like, "Well, what was that?"

Craig: Does that make you nervous at all?

Laura: What?

Craig: The opening of the flood gates.

Laura: Not nervous in that I'll go crazy because I know I'm not going to, but experimentation is like you think, "Oh, is it going to go right or not go right?"

Craig: Well, it's exciting because a year and seven months in, it's a whole new ball game. It's like you're a whole new diabetic, almost.

Laura: I think newly-diagnosed need to understand that too. It doesn't mean once you hit the year that's it forever, things are going to change for you. Down the road, we have to watch my cholesterol now. The last time I had it done was right when I was diagnosed, I think. Now, when we do it again, it might be fine because I'm probably not eating as much meat because I'm not eating sandwiches at lunch. It's always going to be changing. I think it just depends on your lifestyle and where you are with your body, the way it's taking the insulin and stuff.

Craig: At what point do you feel like you stopped being newly-diagnosed?

Laura: I think I felt that way in a year.

Craig: Do you still feel that way?

Laura: Yes, sometimes. I guess I don't feel like it's new because I've lived it long enough now. I think sometimes I forget that it was within a course of a year, I became a diabetic and then I had to give up gluten. That's two huge things. Then I had to adjust in my diet. Now, I think I'm pretty much okay with it. I'm like, "Okay, this is the way it is." I don't feel any of that like it's new. I've been doing it, so it's just routine and you do it.

Why? Do you feel like you're so old?

Craig: [chuckles] I don't know. It's going to be 20 years in a couple of months, in January. It's a long time. I guess it just feels like it is what it's always been. It feel like I don't remember a time without it and it's just part of-

Laura: Who you are and what you do. The only changes are new things, like new types of insulin, new Dexcoms, all that kind of stuff.

Craig: Like you said, every day is a little different. There's no point where I'm like, "Okay, don't have to think about this for a while." I do think I'm more on autopilot, I guess, when something happens I know what to do. I'm not thinking too much, "How many carbs is this? How many units do I need? Oh, I'm running a little high, what should I do?" I can just instinctively do those things. That makes it easier because then I'm not thinking about it as much. I'm only really thinking about when I have to do something,

Laura: We talked about that. Sometimes you eat the same meals because then you know exactly-- Like you have a meal and you know, "Okay, this is most likely how this meal is going turn out for this amount of insulin." It just makes your life easier.

My breakfasts are basically the same. Unless when we travel then it's different, but it's been basically the same. There's no thought for me. It's like, "This is what I eat," and I'm done. Even dinners, I've been trying to try new things, just because you get bored with the same old stuff. It's, how does the new meal affect me that I have to think about it too? Like, "What is this going to do and how's it going to do it?"

Craig: The hard part with Type 1 is always when the routine changes and I think that's when people get anxious. It's, "Okay, I'm going out to dinner. I've never eaten at this place before. It's a different time of day. It's different food. Maybe I'm on a different time zone or I'm going to go for this hike that I've never done before. I don’t know what it's going to do, how hard it's going to be." I don’t know, sometimes I guess it feels like is it worth the anxiety? Like, "Oh, is this meal worth all the trouble, all the mental anguish you go through and the second guessing?" Then if you get it wrong you feel bad. If you get it right you don’t really think about it.

Laura: Right. You try to learn from it, but again, this disease doesn’t follow title, is this going to cause that. Sometimes you just don’t understand why. I've been trying to do more of not blaming myself, but blaming the disease and it is nothing to do with me, "I didn’t do something wrong. This disease is just nuts." You of course pay attention, try to take care of it, but sometimes I'll look at something else, even say to your uncle, "Does this make any sense to you?" He's like, "No." Sometimes it makes no sense and it's just not even worth thinking about, because it just makes no sense. [chuckles]

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Craig: It's National Diabetes Awareness month and if you do anything to celebrate, please leave a review of Beta Cell in the Apple podcast app. It really helps other people become aware of the show. See what I did there? If you've already done that and want to do a little more, you can join our Patreon for just five bucks a month to help support the podcast.

Thicker Than Water is the 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 Ragonese.

I'm Craig Stubing and this is Thicker Than Water.