Desire's Journey Living with Type 1 Diabetes

In this episode of The Sugar Diaries with Bell, I sit down with Desire to talk about her real life journey living with type 1 diabetes. From the moment of diagnosis to learning how to navigate everyday life. She shares the challenges she's faced, the lessons she's learned, and how she's found strength and confidence through it all. 

Transcript

SPEAKER_01 0:00

Hey y'all, and welcome to the Sugar Diaries with Bill, where we talk about all things diabetes. As you know, I have type 1 diabetes, but there are many different versions of diabetes out there, such as type 2 and also just space analog. So, today we have another guest on the episode, and it is Desire. And today we're going to talk to Desire about her experience of living with diabetes. How are you doing, Desire? I'm well. How are you? I am wonderful, and I really appreciate you for joining.

SPEAKER_00 0:35

So, yes, thank you. Thank you. I appreciate this that you're doing because everybody has a different experience with type 1 diabetes.

SPEAKER_01 0:44

So definitely. It's great. Yeah. Definitely. So tell us about you.

SPEAKER_00 0:52

So most people have like with type 1 diabetes. They they say they get it, you know, when they're a baby. I got it at the age of 25. And I just suddenly I used to be like a thick, thick, now I'm slim thick. But I um lost a lot of weight. And um, to be honest, I was in college and I was throwing up and thinking that like I was pregnant and I already had a baby. So I thought, oh no, my mom's gonna kill me. I cannot. This cannot be it. You know, I just got accepted in the medical assistant program. Um, I had lost um close uh relatives. Uh, my grandmother and my uncle had passed away around two weeks apart. And um, I thought it was just stress. You know, I would be so angry and ill at the end of the day if somebody ate my box of fudge rounds. So that's why I thought, like, oh my goodness, I'm craving these fudge rounds. And then I would wake up in the morning and throw up. Well, I was driving and going to a doctor's appointment. Um, it's like, okay, I might as well face the music. And they tried to figure out everything. So the doctor was like, you know, I'd known my doctor for a long time. And she was like, you know, are you, you know, having an eating disorder? You've lost a lot of weight. And I'm like, Me, I love to eat. Are you kidding me? So um the the net the last thing that she did before I almost walked out of her office, and she just she kept looking at me and thinking, like, it's something that I'm missing. And she pricked my finger, and my sugar was in fact 600. So, yeah, so they would not let me leave. Um, I had to call somebody to come and get me. Um, I spent uh several nights in the hospital. Mind you, that my dates for um getting like them telling me that I have diabetes and everything, um, it was my birthday. Oh man. Yeah. So I spent my birthday in there. Um I uh really wanted a piece of cake, but they gave me some sugar-free jello and told me to chill out. Of course, of course. So um, I luckily I didn't go into um BKA, thank God. Um, but I did have to stay in the hospital and I had significant um the neuropathy was it was terrible um later on to just to find out that you know it was just another autoimmune disease that I have um that I guess attacked my pancreas. And I just, you know, they were trying to figure out if it was stress or this or that. And I'm just like, dang, how do you just get diabetes like that? Right. But it just it just happens. And a lot of people like have that misconception of like, oh, you ate yourself into diabetes, you ate too many sweets, that's bad. And no, my diet, even though I did crave those plus rounds, I really was active. I was, you know, um eat like I ate more vegetables, fruits, things like that. And even still, it just it just happened. Um, so it's been a journey um ever since then. So I am 39 now and trying to adjust to, I guess, the new school way because I've been diabetic for a long time. Um, I did try the uh omnipod and the dexcom. Uh unfortunately, I had two remotes that malfunctioned on me and kind of left me, you know, that kind of left me with like not really having faith in the pump, um, especially the Dexcom, you know. Um, and so then I added the Omnipod the next time. And um actually they sent me a letter of the like ones that have a recall, and I'm actually probably gonna make a video on that myself, um, because it's a long list, and I'm I would have to like, I mean, it's a very long list of um ones that were um just just malfunctioning. So recently I've been in and out of the hospital, um, dehydration, um, high blood sugar, A1C out of control. And so now I'm trying the mini medtronic pump that has a tube with it. The omnipot is tubeless. Um, so I'm I'm you know, I'm sad that I'm really at this point, that I it feels like I need that help, but I'm also a single mother, and I'm also, you know, I also wear many hats. Yeah. And you know, we all we still have to survive. Insulin costs so much money. Yes. And it's so many other things that are free, and don't even get me started with that, that you know, that are free and that medical, you know, pays for insurance, stuff like that pays for, but we can't get insulin for you know a cheaper price, you know. So you gotta go to work, you gotta do what you gotta do. Um, and it's just it's really sad. Um, but today is my very first day. They gave me this tube, and um, it's supposed to do um corrective and keep you from bottoming out because the omnipods, not only were they not working, um the DEXCOM was like off, like way off. Like it would say my blood sugar was 120, but really it was 400. Like that's when I was gonna be able to do it. Yes, like I was really going through it. So I ended up having to be, you know, going back and forth to the hospital for that and just making sure, like, and then I started presenting ketones, which is something that I never um never did. So that made me nervous. Like, oh no, like kidding me, but it is what it is. Like the disease just it affects us all different. Like, we all eat, like it's certain things, like I can't eat mangoes. I used to love mangoes, but as soon as I eat a mango, my blood sugar shoots through the roof. Um, there's other things I think that I can't eat, like I can't think of at the moment, but we all just are different, and you know, it's a similar struggle, but still a different, different every day for everybody.

SPEAKER_01 7:13

Yes.

SPEAKER_00 7:15

So it's it's uh, it's kind of it's a disease. Like people really don't realize, and then I, you know, one of the things I hate to hear most is you don't look sick, you know, or you can't eat that, you know what I'm saying? Like, whoo, yeah, it's it's one of those things.

SPEAKER_01 7:32

So yeah, some of the biggest things that annoy me definitely are when people are like, all you gotta do is eat this, or if you just eat natural fruits, or uh, if you just just all of this or juice your dreams, um, things like that. And it's like, I can do all of that, but even if I eat strawberries, my sugar goes up, watermelon, my sugar goes up, a banana, my sugar goes up. Stop trying to think of stuff that I can eat because no matter what, there are natural sugars out here, and I just have to take insulin to survive, and you're not hearing me when I say that. And it just frustrates me because people try to argue, well, drink this tea or drink this sir, all of this stuff, eat just meat. Somebody said, Eat just meats one time, and I'm like, Okay, like you can't do that because if you ain't got no carbs, you're gonna just pass out. Oh, exactly. It's it's like ups and downs. Like, stop trying to educate me on what I need in my life. Like, I know my body, we know our body, and I think we do what's best as best we can, and even half the time, it ain't even right. Like you said, like your sugar still might be 400 or something when you thought you were doing everything right. So, yeah, it frustrates me that people who don't have diabetes, who aren't even educated in it, they're not any type of doctor, endocrinologist, anything like that, but they think they know what's best and can cure you, and that it just frustrates me a lot.

SPEAKER_00 8:55

A lot, a lot, like it does. It makes me kind of like, ugh, like just it is, it's bad. It's bad. People don't understand, they don't, and I think they need to get a little more educated on it, or the fact that like people will mix up uh type one and type two, and that's not no offense to the people that have type two at all. Right. But it's just it's just that it's it's just different, it's different with type one, it is absolutely positively different for each individual person. Yeah, yeah. And I don't know what research they have, but God knows I hope that they figure it out because people should be well educated. Like, um, you know, at one point in time, like when my blood sugars were really low, I kind of get like a drunk effect.

SPEAKER_01 9:44

Yeah, no, I get it. I know what you mean. I hate being low. I I call it a high effect. That's what I like when I tell people because I I was a marijuana smoker and everything. And so I no longer smoke it because it's like when I get high, I feel like my sugar is low. And so I I'm always I'm going to test my sugar right away. And I'm like, oh, am I low? And I might not even be low, but it's just that same effect to me. And I'm like, I don't even want to smoke weed anymore because I I it just confuses me ever since I got type 1 diabetes and have been low and stuff, it confuses me, and I just don't want to experience that anymore. So I no longer have the desire to smoke weed.

SPEAKER_00 10:26

I understand, I understand. I'm I'm struggling with it myself. I've been telling myself the same thing, like, okay, it's about time to stop because it is a feeling of like like anxiety almost.

SPEAKER_01 10:36

Like, yes, you know what I mean, fast all of that stuff, and I'm just like, that's the same stuff I feel when my sugar gets too low, and I don't like that.

SPEAKER_00 10:46

Yeah, neither. Because you don't you don't know, you don't know if you immediately need to eat or if you just and now you're just stuck on that roller coaster till you get off. Exactly.

SPEAKER_01 10:56

Exactly. So yeah, that's what I I quit it. And I mean, I smoked a long time even after I got diabetes, but yeah, after going low so much and just experiencing that and how scary it is to go low, yeah. I I started like just being like, you know what, I just don't want to play with this no more. I um I don't know, I don't want to do it anymore. Yeah, it ain't that deep. Yeah, it's not people don't even know. It's not, and I used to love it.

SPEAKER_00 11:27

Okay, me too, me too. I be sad. I like I said, I I struggle with it too. Like, dang, I don't want to quit because it used to be that crutch, but now it's kind of like so. I'm I'm I'm working on it though. I'm wanting to go back to work out. I enjoyed working out just because it's like it helps relieve stress too for me. But now I have a tube with the mini metric pump. And so I'm um, I'm probably gonna be posting me some videos about this.

SPEAKER_01 11:59

I'll definitely be watching because I'm interested. What does that look like for somebody? I've never had a pump, I don't know how to use a pump. Um, could you educate us a bit on what that looks like for somebody who has never had a pump or and understand, we want to understand that.

SPEAKER_00 12:15

Okay, so you have one um, which is your constant glucose monitor. It's two pieces to it. So with the Omnipod and the Dexcom, the Dexcom, they have now they have a 15-day um DEXCOM. And but it used to be 10 days. So when I was doing it, I would change my constant glucose monitor. It will watch my blood sugar, and you can have it on the phone, or they give you like a little remote, and it's Bluetooth, so it communicates with the omnipod, which is which what which is what has my insulin in there, but you gotta change that every three days. And when I tell you, just waiting on spots to put like they say that it's better, and don't get me wrong, I I do I like it, but then I don't because I'm so used to like just pricking my finger like that right there. I feel like it's gonna be the safest bed. Because I almost feel like cyborg, you know what I'm saying? Like now I really feel like cyborg because I'm walking around today, kind of a little sad. Yeah, yeah. It's the tube, cool. Now everybody's gonna see the this big, huge, you know, the old school beeper. Right, right. That's what it looks like. Okay, okay. Okay, with a tube on it attached to my stomach. Oh, wow. Okay. And so you put in, they call it bolusing when you take your insulin. Um, and you know, when whenever you get ready to eat, you count your cards, and then you put it in and you bolus, and then it gives you insulin. Um, but like I said, I I had enough of the Omnipod and the DEXCOM because it just wasn't communicating right. And then it was just like I had to put it. The mini metric, what I can say so far is that both of them are smaller devices and smaller needles. So, you know, I'm not having all those like spots that look like I just constantly, but regardless, you know, you're gonna have like, I don't know about you, but I got a favorite finger. You know what I'm saying? Yes, I do too. I'm gonna Okay, I'm gonna hit that finger, and that finger after a while, it's a little numb, but that blood gonna come out and I ain't exactly, exactly.

SPEAKER_01 14:19

I feel like I can see the holes in the top of that finger too, like from eye cricket.

SPEAKER_00 14:24

Okay, so you can imagine how the side of my legs look feel look, yeah, and stuff like that, trying to change that every three days, yeah. Like, come on now. I just I just can't see that it's the best or that it's even better. And of course, the even with insurance, this thing right here is running me about a thousand dollars.

SPEAKER_01 14:47

If I'm so sick of the healthcare industry, because that it's crazy. We need this to live. Like, we need it to live. Can you like either make it very affordable or make it free? But like this is crazy.

SPEAKER_00 14:58

Thank you, thank you, and then they got a nerve to have different pieces. You got your lancet device candles, you got your, you know, and you know, right now my mine is my battery going dead, and I got to go buy two watch batteries.

SPEAKER_01 15:12

Of course, of course, yeah. That that's so stupid. And then every time I need a refill, they're always not in stock, or my phone is never in stock. So I got to run around and do all kind of extra shit. Yeah, I I don't understand that.

SPEAKER_00 15:26

Mm-hmm. Yep. When the hurricane hit, I couldn't find insulin nowhere. Oh man, nowhere. And I had just given away some insulin, like a whole bunch, cleaned out my medical, you know, medical cabinet because they changed my basal insulin and all of this and that. You I found out that there were good people in the world though. Um, you know, because people actually came and found me. Like it was a lady down the street, her son had, you know, we we traded insulin and and devices and stuff. And I mean, it really to this day, it really touched my heart. You know, that's people really are good. Like, yes, for real. Um, but it it's tough. People don't realize, like, it's tough, and it's just it's nothing but an extra bill. Like my whole um, my my insulin, my medication, that's my livelihood. Yes. Right there. Before I even talking about surviving or feeding myself or feeding my children, or you know what I'm saying? So one day I, you know, I look to maybe do some type of profit, non-profit. I don't know, for that because it is ridiculous.

SPEAKER_01 16:32

I would definitely join into that because yeah, I think so too. And that's another reason, like, why I'm doing my podcast again, because people need to hear this stuff. You never know who just got diagnosed today or who's just now learning that they got, you know, diabetes and things like that, where they have nowhere to turn. They're like, okay, doctor, what to do? And the doctor gives you facts about what to do, but the doctor doesn't have living experience. And you look up on Google, Google don't got living experience. And that's what I went through when I first got diagnosed. I'm like, okay, I need to know I'm going super low. I need to understand what other people do, how do how do they handle it? I'm going super high. How do they handle it? Do other people go through this? It's so many questions, especially when you're first diagnosed, and there are no answers out there because people ain't talking about it, and that's why I want to talk about it.

SPEAKER_00 17:22

Yeah, and the insulin is extremely aggressive. You're fast active, it is extremely aggressive.

SPEAKER_01 17:27

I had to do that.

SPEAKER_00 17:28

If you ain't get that right, you're gonna be on the floor sweating.

SPEAKER_01 17:31

I was my very first time because the doctor just said it was my first time. He was like, All right, you're gonna go home, you're gonna take humilog before every meal, just take five units of humilog, 15 minutes before every meal. So I'm like, okay, so it was like I was going home for the first time, and I think I was about to, I was cooking. So the food was on the stove, and I'm like, all right, we got about 15 more minutes to be ready. And I'm gonna hop in the shower real quick, take a shower and everything else, and get my, you know, get it into my system. I took that insulin. By the time I got out the shower, I was on the floor, and I had my husband and daughter like bringing me cups of orange juice just back to back to back until I got like my eyes started going black and stuff. I could feel me shaking. It was one of the scariest experiences, and I'm like, okay, I needed to know that that was gonna happen. I don't have experience with insulin, I didn't know nothing about insulin. I just knew my doctor said take it before the meals. I didn't know it was gonna do that.

SPEAKER_00 18:26

Yep. It didn't I I learned the hard way too. My my daughter and I were just in the house alone. And she, you know, she's so smart to this day. I mean, my kids, I I don't even know what I would do without them. And I don't think they know what they would do without me. We three peas in a pod. But I I woke up on the floor in the middle of the hallway. She done my daughter had called 911 and she climbed up the cabinet and got some syrup, I guess, and poured down my throat. When I woke up, I was like, I smell waffles. That was the first thing I said. That was smart, though. She did it, she did it. Now I was sticky all over, but I thank God for that.

SPEAKER_01 19:09

Yes, that is super smart because I definitely get honey like now when I go low like that, and I don't know why, but I just like plum it. I go straight to the cabinet and I get some honey and I just eat some honey.

SPEAKER_00 19:22

Yeah, you gotta have something quick. You gotta get it quick because if not, you just you just don't know where you're gonna end up. Exactly. Yep. So definitely, definitely, I definitely appreciate this. I can't say I couldn't say that even any in more. And I, you know, I hope people do listen so that they can educate themselves because like even the highs, you be so angry and mad, and just like you just you don't even know why you mad, you just mad.

SPEAKER_01 19:51

Yes, yes, I get it. I understand, man. It it's definitely like a struggle because no matter what, unless you're just right, then okay, you're cool. But if you low, you got a whole mood. If you high, you got a whole nother mood. So, yeah, and people gotta understand that they do. A lot of people don't.

SPEAKER_00 20:14

Yep, it's tough. I mean, I even think we should have, you know, certain types of things like on our cars or on our, you know what I'm saying? Because I'm telling you, once I get the solo and then I go on and pass out, I don't know if I just start talking crazy. Like my my kids already know my phrase. Yeah, they'll be like, Mom, have you checked your blood sugar? And I'll be like, have you checked yours? Yeah, I'll be like, oh, they'll be like, oh no, go home, go to the cabinet, go on, give us some sugar. She she she don't know. That's hilarious. It's bad. Like, it is. So, yes, it's a lot.

SPEAKER_01 20:50

Yeah, but it's good that your kids know like you. Because uh, yeah, my husband and like my daughter who's 18, they definitely know. And I get all kind of discombobulated and confused, and I I start, you know, tripping out and whatever, and they like, yeah, your sugar's low. And they know all right. Well help me, let's do this. But yeah, it's hard if no one knows how to read you. If those people who are around you all the time, if they can't even read you, then they'll just get frustrated with you, and that's not what we need when we're low.

SPEAKER_00 21:23

Yeah, and assume that you're drunk or something, yeah you know, that you, you know, like it it needs to be something done about that as well, just because you you just you never know where you might be. It just hits you suddenly. Yes, yeah. So I learned today though, when I take one unit of insulin, um, it makes my sugar go down 47 points. Now that's something that the uh mini uh Medtronic does that the omnipod didn't do. Because I also I often wonder, like, okay, could I do the math of how much my sugar is gonna go down if it's right here to right here? You know what I mean? I'm sitting here trying to be the, you know, walking around being a human calculator. But meanwhile, I've never known, you know, and I think those things like that are important too for diabetes.

SPEAKER_01 22:08

So they are. And so that was one of the first things I learned with getting with my endocrinologist. When I finally got an endocrinologist and stopped seeing a primary care physician trying to tell me about insulin, I learned a lot more. And they did tell me every 40 units is what. So like if my sugar is 140, I would take one unit just to get it back down to a normal level. And that's how I calculate everything. So when my sugar is 300, I'm taking five units. When my sugar is 60, I take, I mean 260, I'll take four units. So that's how I've always calculated my stuff is it's in the 40s, like that. So one unit for every 40.

SPEAKER_00 22:49

Yeah, I learned something today. You learn something new every day about it, I swear you do.

SPEAKER_01 22:53

I swear you.

SPEAKER_00 22:56

And it's not the same as everybody else's either.

SPEAKER_01 22:59

So it's not. That's true. And honestly, if I was like, and that's with me on my long-acting insulin as well. So if I was not on long-acting insulin, it would take way more fast-acting insulin to put in my body. It wouldn't be every 40. It would be, I don't even know what, because I'd be on long-acting insulin all the time. But it would definitely be a lot more short-acting insulin.

SPEAKER_00 23:23

Yeah, so I and I definitely I think it's a difference too in the insulins as well.

SPEAKER_01 23:28

Yeah, that's true. Yeah.

SPEAKER_00 23:30

So they got me on limb jiv right now, some new insulin. I think I just want to go back to my humologue, you know.

SPEAKER_01 23:37

Yeah, I like humilog. So limb jiv is a fast-acting insulin.

SPEAKER_00 23:42

It is, it's a newer one. So I'm trying. We'll see. Yeah. I feel like a, you know, a a a lab rat.

SPEAKER_01 23:50

Like just yeah, I've definitely felt like that before too. Cause that it and that's how I feel when I every time I go to the endocrinologist, especially with the long-acting insulin, and they we talk about how my levels are in the morning and da-da-da. And they're like, well, go up two units um if it's like this over time, or go down two units, stuff like that. And I'm like, I need a set stuff. Like, y'all don't know, y'all are experimenting at the end of the day. Y'all are learning just like we're learning.

SPEAKER_00 24:16

Just give it to me and let me figure it out then. Yeah, okay. Just tell me the truth. Like, don't do that. Let look. I feel a little bit better. You just look, we don't really know. Yeah. Okay. Because that at the end of the day, that's basically what they're telling you in so many words. Yeah. They don't they don't want to say exactly that, I'm sure, but um, I I prefer the truth. I I just prefer you to just go and give it to me straight.

SPEAKER_01 24:41

Yeah.

SPEAKER_00 24:42

That's just me.

SPEAKER_01 24:43

Me too. So I understand that. So, is there anything that you would want to tell somebody who is newly diagnosed or just coming into this world, trying to understand things? What kind of advice would you give to them?

SPEAKER_00 25:02

Um, you know, pay attention to your body. Because your body will speak to you. It will speak to you. And, you know, and do as much research and, you know, kind of get you a list of things like different foods, get you some safe foods, you know, because I got my safe go-to foods, whether sugar's too high, or my safe go-to that I know is gonna bring that thing back on up, you know. Yeah, get your safe foods and and and things like that, and just, you know, take it one day at a time because it is so um, it can be so depressing. Um, it really can. And it is it is definitely a change. Like for me being 25 and getting, you know, diabetes, I see kids um, you know, like at a preschools, and you know, because my mom's a preschool teacher that I have, and that makes me so sad. I'm like, oh, that little baby got a pump on already. Maybe don't even know what it's like to eat a funnel cake at the carnival. You know, I'm talking about like, uh, so it it just it it it is different for every person and what every age and all of that and the experience. But I also, you know, I pray more, you know, the older I'm getting, the more I'm like, I just have to get into my religion and you know what I'm saying, like give it to God type of thing, because it is, it is um, it is really, it's really hard, but you you got to, you know, build your resilience and keep going because that's all you can do.

SPEAKER_01 26:31

Absolutely, and that's great advice, and that's one thing that I continue hearing every time I ask someone on my podcast, like what advice would you give? It always um goes to know your body and listen to your body, listen to your body, and that's very important because I preach that as well. I'm a big advocate for listen to your body. People can't tell you what to do with your body or how to deal with your body. If you know you're going low, you need to do what's best for you. If you know you're too high, do what's best for you. Don't let anybody talk you into taking too much insulin or not taking enough insulin. Listen to your body.

SPEAKER_00 27:09

That is very that's exactly correct.

SPEAKER_01 27:12

Yeah. All right. So, um, I know you said you were gonna make videos and things, and I'm sure other people want to see them. So, do you want to go ahead before we end this and give your TikTok so that people can follow you and look at some of your videos?

SPEAKER_00 27:29

Um, it is my that that's why I was telling you, just say the first name. But it's uh Sweatdo is S-U-E-R-O 887. Um yeah, I I I do post sometimes on, you know, but I just try I try not to be too much on it because you know what? When you have diabetes, it's diabetes every day, all day, any day, all the time, anytime, all the time.

SPEAKER_01 27:51

Yep, thanks.

SPEAKER_00 27:52

So I don't always post, but I am gonna post a couple lists for like people that was on the omnipod. Like I do plan on making me a video um with that, and I try to have humor. I try to have humor with it too, sometimes, because sometimes it like sometimes I watch your videos or other people's videos that have diabetes and it kind of gets me out of that mode. Like I know I'm not alone, okay? I'm not alone. Yes, yes, so but yes, I appreciate any follows or anything like that that I can get. And like I said, I couldn't say it enough. I really appreciate what you're doing because people need to be well educated, you know. They really do.

SPEAKER_01 28:30

Yep, thank you so much, and also thank you for joining and being a guest today. And you guys, I appreciate everybody who is listening. Thank you for joining the sugar diaries with Belle. I will see you guys next time. Bye.