A New Tribe

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Craig: I'm Craig, and this is Thicker Than Water. In our last episode, my aunt Laura heard back from her doctor that her bloodwork confirmed that she had Type 1 diabetes. Now, one week in her diagnosis she talked about how she is coping with shots before every meal and adjusting to her new normal.

You're at your one week anniversary of having type 1, pretty much.

Laura: Woohoo. [laughs]

Craig: Does it feel like it's only been a week?

Laura: Some days it feels like it's been longer than a week but most days, I think, because my first week was so active and I was able to get so much done that I feel good that I was able to get so much done. Then I'm at a point now where I'm feeling like I'm grasping it. The reality of everyday life, I don't think it's still-- That's going to take a while for me to really get a hold of.

Craig: It's not routine yet? It's still just kind of-

Laura: Yes. I'm a more double-check kind of person. The kind of person who thinks, "Did I leave the iron on?" when I leave the house. I do know that I'm really paying attention to what I do. I really look at the carbs I'm going to eat. I doublethink which insulin pen I have in my hand. I monitor my timing of my day so that I know I'm pretty consistent with meals. I think for a while, it's just going to be that until I-- It's only been a week so I'm okay with that.

Craig: It's a lot of things, but I think the longer you do it you'll get more comfortable. You've been taking basal insulin for just over a week, I think, or maybe just about a week now. You've had what, seven shots? In a month, you'll have had 30 shots and each shot won't be such a big deal.

Laura: Right. Then, of course, I try to keep things very organized and not just throw in some pen here and do this there. I got myself two separate plastic takeout containers. One is white, one is black. The white one has my meal insulin and the black one has my nighttime. It just helps me to stay organized and know where they are, they're all in one place with the needles in there, the alcohol pads, and then I can pull the one out I need at a time and it's easier for me to say, "This is the one I need to use right now."

Craig: Well, I imagine that that organization is helping you grasp the lifestyle change because it's just so formulaic. It's wake up, take your shot for breakfast, eat your breakfast. It's funny because it's so similar to the way I was when I was diagnosed so maybe it's a genetic thing. I've told you how formulaic I was with these are the types of meals I want to eat every day, these are the things I'll eat for breakfast that are this amount of carbs, these are the things I'll eat for lunch that is this amount of carbs.

Laura: I at least understand the disease. I have a way better grasp of the diet because I'm a dietitian, but even I check and double-check. If I didn't have this background knowledge, I can imagine how hard it is to adjust to this. It's got to take a longer time for most people who are diagnosed in adulthood because your eating patterns are set. They are set. You have been eating the same way for 60 years. It's huge. People need to really reach out right away to find the good support system whether it be healthcare professionals like a diabetic nurse that you can call or email, a dietitian that you can call or email. Then also, people in the Type 1 community, if you've got groups, even through Facebook, just to make some kind of connection whereas I have you, your mother.

Craig: I'm curious, how my mother has been. She doesn't really-- She told me-

Laura: Your mother has been great. I think she was really, really sad when I got the diagnosis. She really didn't want me to have this, but she totally understands it. She totally understands what I'm going through, and she tries not to be bugging me because right now I'm in this phase of-- I talk a lot to your uncle. I talk or text to you and I talk to her, but some days especially when I've had appointments, I'm like, "Okay, I can't talk anymore." She's the only one who asks about your uncle, how he's doing. I just saw that yesterday. What is it? TD 3 is to support people? Is that what they call it?

Craig: Type 3, yes.

Laura: Type 3. I showed that to your uncle. I think it's like any other disease or whatever. When you have Alzheimer's or heart disease, the spouse and the family have different things they have to deal with. I think it's the same with diabetes except it's a little more regimented. It changes so much in a daily life for everybody, but so far it's gone so good.

Craig: How do you think he's been taking it? Maybe this is a better question for him.

Laura: Ken is in the other room. Uncle Ken is very good because, by his career as a journalist, he listens when people are talking. Now he's helping me find, read labels, understand how much I can have in a meal. We're learning a lot of stuff together. Sometimes I think it's draining if I talk too much. I'm hoping now that I'm into the second week, that it's going to become less and less. It's not going to become this huge thing that we're always talking about because it shouldn't be, but it's only been a week.

Craig: The big thing I think that happened in the past week is you started taking bolus insulin for meals.

Laura: I saw the oncologist on Wednesday to which I was lucky to get in so fast, and she started me that night. You know what? I had already been giving myself for a couple of days the evening shot. I would say for the first two days it's kind of "Ugh, I have to do this every meal." Then once you start doing it, it's like you just do it. You just have to do it and you do it. Knowing that the shot doesn't hurt, it's not anything-

Craig: Was that the hesitation where you're just not a needle person? I wasn't a needle person.

Laura: I don't particularly like needles. I never liked blood tests and stuff. Then I also realized if I can prick my fingers so much.

Craig: That hurts more than the shots, right?

Laura: Yes. I can't even really say it hurts. It's like just this little jolt. It's not fun when you add and you think about how many times you're jabbing yourself in a day when you have to do all the insulin and the testing. My hope is if I can move to the Dexcom, the glucose monitoring device, then I'm eliminating a lot of the pricking and then it'll just become this shot is a shot, you just do it.

Craig: That's the thing. People say, "Oh, I can never give myself shots every day. I can never do that." I'm like, "What's the choice? You just die?"

Laura: What's your alternative? You just find a way to wrap your head around it. I still think once you do it, maybe after a month, I won't even give it as much thought. I think now it's important to pay attention to how you do things because then that'll set up your regimen. Like I said, if I was just putting the insulin down here, there, forgetting where I put it, that's not going to do me any favors. I want to be regimented so I know this is the insulin I'm taking, this is the amount I'm taking, this is how I prep the pen, this is how I prep getting the shot, I get the shot and then I dispose of the needle. Very 1, 2, 3, 4, 5, done, whatever. I don't think they teach you that though.

Craig: It's good that from week one you're establishing these good habits that once they're established, you're like, "Keep doing it." It's like you're doing it early enough so that you don't have to reinvent the wheel in six months or in a year when it's like, "I keep forgetting to take my dinner shot because I'm cooking dinner." It's just, once you have that ingrained, it's much harder to lose that than it is to learn it later.

Laura: Right. Then one other thing I wanted to say was one of your friends reached out to me and sent me a little gift so I just wanted to say it's an interesting aspect to belong to a new tribe and a new community. You can look at it as being sad. It's a community many people wouldn't want to be in, but it's so refreshing to know that when you have this, there are a lot of people out there who want to take care of you and help you. I just want to say you should always be open to people who are more caring and more loving than we seem to get every day in our world, that's all we see is more of the bad. That was the other thing I wanted to say.

Craig: What did she send you?

Laura: It was really lovely. She sent me a travel bag and then a little unicorn bag which I did not understand what the unicorn was, but she explained it. Hitting the 100 mark is called catching unicorn and I thought, "Wow, last week I hit 97." I do pretty good. One of my meals-- I did pretty good for my first week. A cute little unicorn sequence bag as well and then she filled it with start and some unicorn tattoos. Little mini boxes of raisins, which she said are 10 carbs a piece, and then a whole bunch of Starburst which I think it's what for Starburst.

Craig: Yes, each something like that.

Laura: Yes. Then she sent me hand cream, sanitizer, a bath bomb, some hair clips to remind me to take care of myself, which I thought was also like I said, at this point, I had to take care of myself. Sometimes people-- It gets hard especially I think sometimes for women because they're the caregivers, but I've really tried to just say, I have to take it, I have to do what I have to do to adjust and then also her she was a reminder of life goes on, take care of yourself. Do Thanks for yourself, don't let this become you," which you've told me to and your mother's told me and I get it, but sometimes that's hard to wrap your head around, especially in the first few weeks.

Craig: Knowing it, and then living it are two different things.

Laura: Correct. I know there's going to be days where it's going to be really bad, I'm not going to be happy, but I also know that tomorrow will be better, which is the way I've always lived my life. Some days are just not so hot, but you just move on to the next day. The thing to recognize is, if I'm overwhelmed, I need to call you or I need to call your mother or when I start making more friends who have Type 1, call them.

Even if it's just me reaching out to them and say, "Hey, it's been a really crappy day," just to hear him saying, "Yes, I hear you." It's crappy. Then "It's okay." Then you know it's okay to say it's been a crappy day.

Craig: On the next episode of Thicker Than Water, aunt Laura tries not to obsess too much about Type 1 diabetes.

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Thicker Than Water is the production of Beta Cell that's produced by me, Craig Stubing. A very special thanks my aunt Laura. I'm sad you're in this tribe, but I'm glad I get to help share this burden with you. Our amazing cover of Lean On Me is by the incredibly talented Nina Ragonese. If you haven't yet, subscribe to Beta Cell wherever you listen to podcasts to get all of our shows downloaded onto your listening device as soon as they're available.

If you love Thicker Than Water or any of the Beta Cell shows, you can support us on Patreon. There you can get bonus clips, as well as our brand new supporter-only show out of range after dark. On this week's episode, we talked about the overwhelming whiteness in the Type 1 online community.

I'm Craig and this is Thicker Than Water.

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