Leap of Faith

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I remember being diagnosed with type one diabetes when I was 13 years old. I can picture the doctor's office, the ICU, and still taste the hospital food. But you know that story about how, if you drop a frog into a pot of boiling water, it'll jump right out, but if you put it in cool water and slowly raise the temperature, it won't notice until it's too late?

That's kind of what living with type one feels like to me. Sure. There are a lot of changes that first day, all seemingly revolving around needles of various sizes. But all of the real baggage of the disease built up slowly over time.

And I didn't notice how much there was for myself until I saw the changes happening to my Aunt Laura one after another, and as you have also heard over the last two years of the show, When you have type one diabetes, you think about it all the time, probably without even realizing that you're thinking about it. Maybe it's how you check your blood sugar the first thing every morning, how you automatically count carbs when you see food, or how your fashion style has changed to always include a bag or jacket with pockets to hold all of your supplies.

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

Craig: Last time we talked, you hadn't been going out and doing things, right?

Laura: Right.

Craig: But you got both vaccine shots. How did it feel to get them finally?

So now after a year of being at home during the COVID pandemic, Aunt Laura is going out into the world again. And we're seeing all of the changes from her second year with diabetes hitting her all at once. And, as you'll hear, it can be pretty exhausting.

Laura: think it was more of a feeling of some relief. Like I don't have to worry about as much. We're going to go to our first baseball game tomorrow and it's still not full capacity. And I bet we're going to see people that are going to wear masks. So I think I'm going to always have a mask to decide whether or not. So I would say it was a nice way to have some extra comfort level, but I still think, yeah, sometimes I'm still on a cautious alert. But you know, I'm not worried about it, so that's a good thing. You have to start doing things otherwise.

Craig: Otherwise you're just existing.

Laura: Well, yeah.

Craig: Last time we had talked, you just seen your new endocrinologist and one of the things he emphasized was loosening up a little bit.

Laura: Right.

Craig: Do you feel like you've done that at all?

Laura: A little bit. I'm not as worried now about eating something. Like I found gluten-free Oreos. So if my blood sugar is like 80, I'll have an Oreo, which I never would have done. And if I go up to like 130, I'm like oh well I went up to 130. It's not as scary.

For my birthday. I found a gluten-free cake, but it was like strawberries and whipped cream. And I hadn't been eating things like that. That were so high sugar. So I'm still not really good at guesstimating, but I haven't done it long enough to know how the sugar is going to affect my blood sugar. What I do notice is a lot of times it goes, whoop. It goes hot and it comes right down. So guessing for that it's kind of different. I've only taken extra insulin between meals a few times for like a piece of cake or something if we're somewhere and I want to take a little extra.

Craig: It does sound like you've loosened up a lot from you were first diagnosed.

Laura: From the first days, right. It's funny because I called the ballpark because I wanted to know, well, one, they have new bag regulations and I don't have a medical bag, like officially looking medical bag, but I can give a clear bag that I put everything in. All my stuff is in clear little bags. I don't care, who knows I'm a diabetic, so I've got my insulin and one, I got my meter and I've got my little snacks and we're not supposed to bring food into the ballpark. So I said her, "okay. I want to know, am I going to have any hassles bringing in my..." and she's like, "no, no, no, you shouldn't if you say it's a medical bag."

But then I said to her, " what's open for concessions?" Because not everything's open. Because I feel the bigger hassle in my life is the gluten free than the diabetes. And she laughed and she goes, "Well, I would've thought the diabetes would be worse." So I said, "Oh no, gluten free is worse."

Craig: Do you think she'd ever gotten a call like that before?

Laura: She was very nice, very helpful. She wanted to be reassuring. I ask because you know what, and this is the way people learn when you call and you say, "Hey." You know, you never know if she's in a meeting sometime some day somebody talks about this stuff. And she says, "Well, I got a call about this." And you know, I mean, that's kind of my help to change things.

Craig: I think that's great.

Laura: But say if I were going to visit California and I'm going to see a game there, I would look on their site to see, you should have a list of all the foods you serve and especially in California, I think California would have gluten-free, vegan. Right? I believe in calling and saying, "Hey, what do you have?" And let them know that people are looking at the menus and talking about that stuff.

Craig: Interesting because I think that a lot of people with type one, I don't, I don't know what the word is. I don't think it would be ashamed to ask or afraid, but just wouldn't want to, and I don't really know why that is.

Laura: I don't know if it's because so many of us like to feel like we're in control. And we don't need to have help or we're afraid if we ask something, then we're going to, you know, I still haven't gotten those comments of, "what do you mean you can eat that?" when she said, oh, I can't imagine it's harder to find gluten-free rather than a diabetic. Cause she's probably thinking, well, you can't have any of the fun stuff at the ballpark. Well, I could have a Twizzler, I can have ice cream. I can have that stuff if I want to go ahead and take the insulin for it. So I think it's still it trying to educate people. Maybe.

Craig: It does come with us with a certain stigma, I guess.

Laura: I also write people. They're not too happy when I write them. When like, if they're doing a gluten-free Instagram people, you know, they have a book and I'll say, how come you don't have any nutritional, informational facts? And they're like, well, you know, we're not, I'm not gonna, I said, are you going to have that in your next cookbook? "No." I was like, well, why not? I mean, I don't expect it to be like exact, okay. I understand it's a pain, but all it takes is a person sitting at a computer plugging in the recipe. There's programs for it comes back. No, but I write companies and say, Hey, what do you mean? A serving is seven eighths of a cup?

What is that?

Craig: Yeah.

Laura: Or are you looking at, and it just says serves four. That isn't a measurement, and I think that's hard for diabetics, especially if it's a food you've never had before, and especially with gluten free, because I feel like it's a little different because it's rice, it's so much rice and it's processed so differently than wheat. So, yeah, I'll write a note saying, Hey, sometimes they do like trader Joe's. Gluten-free always shows when she shows a new product, I think is that she, the nutrition label. So I wrote it and said, they, you shown that so much for showing the nutrition label, because then I look at it and I say, oh, that's a product I would consider buying. So it's just wanting information. ,

Craig: What was interesting about you being diagnosed is that you had the experience of being a registered dietician. So you understood nutrition, how to read a food label, what a carb was. But do you think your experience living with diabetes has impacted the way you interact with those nutrition labels?

Laura: They say you don't understand about having kids until you have kids, or you don't understand about being married to get married. I mean, and it's the same thing. Even before you were diagnosed, I was counseling people. I mean, I knew it was this huge life change and it's hard to change. When you've been drinking soda your whole life, or you've been eating cookies everyday. I mean, it's a huge thing, but I think being a dietician, now it kind of made me look even further about where we missed the boat about trying to help people or counsel people. Like maybe the nutrition labels should be a huge amount of time when you're counseling a diabetic. Like this is what you have to look for. You have to look for the serving size. So we have the servings, I hit them and it gets confusing too. Cause even I get confused sometimes pasta will just tell you so many ounces. Okay. Dry or cooked? I don't know. if you don't know anything, that could be very intimidating.

Craig: Yeah. And is it eight ounces in a cup? Is it eight ounces weight?

Laura: Right.

Craig: It's all the same units, but it's different.

Laura: It's different. So, so it gets to be very confusing. You've been doing it a long time. I mean, you don't really think about, if you have something, your sister made a cupcake, you just kind of say, okay, it's going to be this right?

Craig: I think any time you eat something, it's kind of a leap of faith.

Laura: Yeah.

Craig: It's always this leap of faith, of trusting what they tell you and then trusting you're guessing it right, and how it's

Laura: What eating with it. That's the thing I realized today, I think: you can never eat anything when you're a diabetic without thinking about it.

Craig: Hmm.

Laura: Even if my blood sugar it's 80 and I go, oh, maybe I'd like to have an Oreo, but I think about it.

Craig: Yeah.

Laura: If I wasn't diabetic, I would have just had the Oreo. I wouldn't have thought about it in the way I'm thinking about it in regard to blood sugar.

Craig: Was that the first time you, you had that conscious thought?

Laura: Yeah. I think I had that before, because sometimes you'll see people post on Instagram, "How many times do you think a day when you're a diabetic." I don't think I think that much.

Craig: I don't know if that's good or

Laura: I know. I mean, today I did think about it because I had this one, a cookie and you think about what could I have? What couldn't I have. I'll tell you what I struggle with now. And I talked to my doctor about this. Is especially now with nice weather. You know, if I eat breakfast or eat lunch, and then I end up outside doing gardening, or I go to watch my grandchildren, I will drop really fast.

So like, even on the days I watched the kids, I set my alarm to 90. So I know at 90 I'm starting to go down and then I'll eat something. And I said to him, okay, so my logic is, I'm eating more on those days and I'm not worrying about it. So I'm still learning how to do that cause The thing frustrates me is you drink the apple juice, you take something. And of course, you're going to go way up and you're going to drop again. So like, I'm trying to figure out a combination of get it back up, and then maybe eat a half a kind bar that's like, you know, nuts or eat a half of a good foods granola bar. So that there's something that's more sustainable in there.

Craig: And that's the kind of thing you can only really learn by doing, right?

Laura: Yeah. And it's always different every time anyway. So, I mean, all you can do is take precautions and say, okay, like I said, the Dexcom, that's an easy thing to change on that day. Just make it so I know I'm not waiting till 70. And 90 and I'll go ahead and do something.

Craig: It's alerting you before you are low, as opposed to having to deal with being low.

Laura: We can talk about Dexcom now. And I don't know if you've had a lot of issues with it tanking?

Craig: Oh, like with a sensor, like

Laura: it just totally, it goes all of a sudden it goes and it's down. And then you're in, this is well we're off for three hours and then it's back on. And then an hour and a half later, it goes back down again. And it seems to always happen at night. Drives me nuts.

So far, I only submit for a new one when it's done at like four times in a row in an eight hour period. And not even for the three hours, I'm just like, something's wrong with it. If it's doing this four or five times in an eight hour period, you need to send a new one and they do.

The one time the guy told me, oh, we only give it to you if it's three or four days left.

Craig: I'm paying for 10 days. Like, don't give me nine.

Laura: Well, see, this is the thing. This is why if I have to take it off, I'm like, you have to replace this.

Craig: It's funny because when Dexcom's working it lifts this burden, right? You know, like there's something watching you and you can just check it whenever you want. But as soon as it stops working or insurance doesn't want to cover it, it's so much more of a burden than just testing your fingers were.

Laura: And that's the other thing. You know, I was covered for it and then I'm not covered for it. It's kind of crazy because now I'm on a arthritis medication that is a lot of money. They'll cover that. And it's more than a three-month supply Dexcom for just one month of this medication and, okay, I know cause it's a medication, but the other one keeps me alive. So We're just going to keep raising a ruckus about it.

Craig: Yeah.

Laura: Eventually. Now I'll meet my deductible and then they'll pay part of it. But until I meet the deductible, they won't. I love on the claim where it says, here's some tips on how to make this bill lower next time. be lower if you cover this. So

Craig: Yeah.

Laura: I mean, that's the whole issue with insulin affordability. Luckily I can afford, I have healthcare and the Dexcom. Yeah, it's a luxury, but technically how many studies have we read that said most diabetics are so much healthier when they have a continuous glucose monitor. I think psychologically it helps. I think it helps you with your management of your blood sugar. I think it helps you learn more about your carbs and how you process them and your body and your eating. And, and there's so many things it teaches you, but they still don't think that that's a necessary item.

I was gonna tell ya that, you know, Nick and his brothers are going to be playing Summerfest. I said to your uncle. Maybe Craig will come we can stand there with a sign during the whole

Craig: Would you do that?

Laura: No.

Craig: Why not?

Laura: probably throw us out. They'd probably get security. And none of his fans would have any clue why we were doing it.

Craig: It would be a good podcast episode though.

Laura: It would be a good podcast episode. But can you imagine? When he's going on tour and you're going to lose, probably some people, some people that follow you are a little crazy. I could see them going up a sign saying.

Craig: I think you should do it.

Laura: no, I don't think so. I'm not spending all that money. It's a lot of money to get those

Craig: I'll buy your ticket if you take a sign.

So you've had type one a little over two years now. Is it what you thought it would be when you were diagnosed?

Laura: You know what I think when you're diagnosed, and especially that was before I had the Dexcom, it was very intimidating. I think it was scary because like, I remember I was watching Kelvin and then I would check my blood sugar because I had to do the blood prick and it would be low. And I'd be like, oh my gosh I dropped so much.

When you don't understand. It was more scary. Now I'm not so scared. I mean, you have fleeting thoughts of, especially if you see a story or something of somebody who didn't know they were low passed away. I think that kind of gives you a little bit more of a scare. What I didn't anticipate back then was having the other stuff happen to me: the gluten sensitivity, the arthritis flareups. And I think I didn't anticipate that one diagnosis led to two other autoimmune things.

I'm not depressed. It just makes you just feel like ugh another thing that I have to deal with versus if I had just the diabetes, that might be pretty good. I have that right now. You know, I mean, just that.

So I did not anticipate that kind of road down my health because I'd always been in really good health. So I think the diabetes was scary at first, manageable, but then I got hit with two other things. You just have to keep trying to adjust to figure out how to keep moving on.

Craig: Is it hard to stay positive?

Laura: I don't think I'm, I'm negative. I think some days you just get tired of it, which I'm sure you do too. You're just tired of thinking about it so much tired of like tonight for dinner had I had my gluten-free noodles and my other noodles because I don't have your uncle eating gluten-free stuff. It's a lot of thought. It's a lot when you're older to change, versus when you're younger and you could kind of have more energy so I think it's kind of a little different for me to be dealing with stuff at this point in my life. But I wouldn't say that, I'm not depressed. I just think some days I get tired,

Craig: Is there anything you do to, or you found that helps with that tiredness?

Laura: I try to do things I like to do. So like, I'm still doing my stitching embroidery, I'll still bake. It was good that my husband worked out of the house all this time, because there was activity coming and going for the pandemic. you know, and then now I have like my family and your mother, I talked to you and my grandkids. It's a good life, I'm okay with it. I still think there's something else I want to do, but I still don't figure out what it is. Maybe some form of advocacy.

Craig: Maybe your advocacy thing could be going to summer Fest with a sign for Nick Jonas.

Laura: I don't need all these teenagers attacking me for one. Are you going to be a lot of diabetic kids there?

Craig: You think?

Laura: Well, they all write in and say, "You helped my child. He has your poster on the wall and," right?

Craig: Yeah. Well you can be there to show them the truth.

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 Ragonese. Follow Beta Cell on social media at betacellpodcast. And you can follow Aunt Laura on Instagram at aunt1d_laura.

If you appreciate what we do here on Beta Cell, you can financially support us by joining our Patreon. There's a link to that at betacellpodcast.com.

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