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Scott Benner 0:00
Hello friends and welcome to episode 1104 of the Juicebox Podcast.

At age 55 In the middle of the COVID shutdown, a 55 year old audiologist named Denise was diagnosed with type one diabetes. She also has a 17 year old daughter with an immune deficiency. Of course, her doctor thought she had type two, but you know the story and if you don't know it, here it comes. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes this episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juice box. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met.

Denise 2:16
My name is Denise and I am 57 years old and I was diagnosed with type one diabetes when I was 55.

Scott Benner 2:25
Oh wow, this just happened? Yes, it did a couple of years. Well, then the obvious questions are is there autoimmune in your family, other people with type one or any reason you would have expected this to happen?

Denise 2:37
Yeah, no reason that I expected it to happen. No type one in the family. No other major auto immune that I know of except some of my own. So I've had minor episodes of psoriasis. I've had I know you've talked about it in some of the other podcasts. I have a history of endometriosis. In I know they're looking at that as potentially autoimmune inflammatory. I have lots of inflammatory responses, did not expect it to happen. And so yeah, kind of came out of left field, have a medically complex and chronically not functionally, chronically, chronically ill child until he was diagnosed with an immune deficiency in the middle of COVID. And so I was chalking up some of the symptoms to stress. I mean, we've all talked about and heard on the podcast of, you know, well, I attributed this symptom to this thing and that symptom to something else and never put the whole picture together. Yeah,

Scott Benner 3:43
you were doing the same thing. Lots of fatigue and

Denise 3:45
yeah, yeah.

Scott Benner 3:47
How old is your child?

Denise 3:49
She will she just graduated high school. She's 17. Okay. All right.

Scott Benner 3:54
Okay, so during. So, this is all happening. Are you having any of the real big classic signs you're losing weight or

Denise 4:02
I was losing weight, but you know, I'm a 55 year old at that point, perimenopausal woman so I wasn't concerned that I was losing weight. I was kind of trying to lose some pounds, right. And it was coming off. I mean, I didn't drastically over the course of about six, seven months, I probably lost I think 12 or 15 pounds, but you know, a couple of pounds a month and I'm working it getting healthier and exercising more and watching what I eat. So I wasn't overly concerned about the weight loss. I was drinking more in an interesting one. And I think you've talked about this one too. I have always been averse to having ice in my drinks, but I couldn't get enough ice. I mean, I wanted I wanted ice water. I wanted ice cold water. I was getting up in the middle of the night and filling a glass with ice. which was unusual for me but I wasn't going to the bathroom and people like Aren't you going to the bathroom? More didn't weren't you and I'm like no I wasn't but you know, I'm a busy mom who works so I ago breakfast, lunch, dinner Bed Breakfast. I mean, so I didn't have time to stay take the time to go the bathroom. But yeah, so fatigue, a lot of thirst. In hindsight, I hadn't attributed this either. I've had lots of orthopedic issues, I was having muscle cramps in my legs, okay. And as soon as I got the diagnosis, I hadn't even told the doctor about that one, too, did the lab work and came back with the diagnosis. And then when I went for the one week follow up, I'm like, oh, yeah, by the way, I've got all these cramps. She's like, Of course you do because you're dehydrated. I thought I wasn't eating enough bananas. And I was working out trying to lose weight. So I thought it was all related to that. Honestly, that's really intense cramping in my legs. Like, it's

Scott Benner 5:42
really interesting to hear an adult tell that story. After hearing so many, like parents talk about all the things that in hindsight, they see and that they wish they would have understood better. But I mean, how are you going to do that? Like you've been alive a long time, you've obviously you're helping a child that has issues you're not you're not, not alien to looking into things. And and still, that's what happened to you? Well, okay, yeah. So what pushes it over and helps you figure it out. So I

Denise 6:08
was having lots of fatigue. This is through the winter holidays. So Christmas time. diagnosis came in the first week of January, if we back up in time, and that summer into July, early August, I was ill, and was in at the doctor, she did lab work. So at that time, she didn't do an A onesie, but she did a cmp and my glucose levels were fine. I think I was like 110 After eating breakfast, like mid morning labs or something. So nobody flagged, oh, wow, that's a problem, which is the general glucose level. So it was all fine. In July, I was ill had a virus had all of the stress around my daughter's diagnosis and her management and her health. And I just was still really, really fatigued coming off a Thanksgiving into Christmas. And I'm like, Okay, I just got to make time for me. I just gotta go the doctor and see what's going on here. Yeah, so she did some lab work, a fair amount of lab work. Did a physician like yeah, I don't, you know, maybe it's a sister, you know, your cortisol levels are probably through the roof with all the things that are going on in your life. You know, and so talk to me about stress relief and trying to balance that. And then she did lab work. And it was on a Friday, very clear. She called me as I was driving to work instead. And so this was during COVID. So I wasn't seeing a whole lot of patient. It's just, well, I'm just gonna say it. You are I was driving to my workplace to get some things I don't typically work. I didn't usually typically work at that time. She's like, you are a diabetic. Now. I'm going to tell you, Denise, I don't think you're a typical diabetic, but I need to start you on some oral meds. I mean, so I think she meant, quote, the stereotypical type two. Okay. So even though I was wanting to lose a few pounds, I was not extremely built as she would expect a type two, I exercise. I have lots and lots of food sensitivities. So I eat a fairly low carb whole 30 type diet I had been for years just because it helps with inflammatory other things in my in my body. And so I felt better when I ate that way. So I ate that way anyway. And she's like, so I know what you eat. I know, you exercise. I know you do this. So I don't think you're typical. But we need to start you on Metformin, we need to start you're on this, we need to do that. I'm like, Yeah, hold the phone. Can we retest? Because this just seems like really strange. Because I agree. I don't know that. I've seen any markers for that. Can we retest tomorrow? She said, Absolutely. Let's hold off. But I do need you to get some insulin. Because my blood blood glucose at that point, I think was it was not high. It was like 300, maybe 300 400 something. My a one C was 13.5. Wow. And she's like, so how do you feel? I'm like, I'm feeling different than I did yesterday, or three days ago, when I was in your office, I'm fine. Like because maybe you need to go to the hospital. I'm like, why I've got this at home. I've got that at home. I don't feel any different. I'm just tired all the time. Why would I want to go to the hospital because they're gonna keep me and she goes, Okay, then I'll send you home. But I need you to get the insulin and probably will shut down Metformin tomorrow, but we need the insulin to get it down right away. And, and we'll retest tomorrow.

Scott Benner 9:23
I love how easy it is to push your doctor around on any thought whatsoever.

Denise 9:30
If you like that, just wait until the next step. So then I go home, I go into work. And I'm like, I don't know that I can do this right now. I was picking up some paperwork and we were trying to schedule some things. I'm like, they just told me I have diabetes. We're not sure what's going on. She thinks I'm pretty sick. I think I need to go home and processes. So I did and I called my phone a friend neighbor who is my walking partner in the neighborhood and she has a daughter who is in her mid 20s now but was diagnosed it 11 with type one diabetic diabetes, and they went to our small school parochial school 200 students, so I mean, so knew her very well. And I'm like, and they just told me I have diabetes. And she's like, I'm coming over. She's like, Look, I know you. And I know this sounds judgmental, but I'm telling you, you're type one, you need to call that Dr. Back. She had called me from her personal cell phone on a Friday afternoon. She's like, I don't care. Call her back, call that number, leave a message. Tell her you want to GID 65 Run, because I'm telling you right now, this was autoimmune. I know you I know your life. I know your lifestyle. Make sure that they run that because we're not getting this wrong from the beginning. Wow. And she was right. They ran it and God 65 The next day, they ran an insulin assay. Okay, so looking at the total insulin in my body. I just pulled that back up to look for the podcasts. The normal range was three to 20 something plus I don't remember the high end because I remember I was 3.2. Right. I thought I didn't have enough insulin in my body. Wow. And the GA D 65. Came back flagged. She's like, how did you know you are right. You are type one, my doctor. She's like, so now I need to get you to endocrinology. And we're not going to start metformin and take that insulin. And

Scott Benner 11:15
did you tell her I asked my neighbor instead of a doctor. I know,

Denise 11:18
right. But it just goes to support what you're doing here too. I mean, again, I talked to someone who lived the life walked the walk. And she's like, Yeah, no, you know, I've been in this space. I'm telling you, I think this is it. And she knew about my other inflammatory issues. I mean, we chat like members who aren't on our walks and stuff. So she knew about some of my health history and food stuff. So the transition wasn't terribly hard, because of the way I ate already. Right? Yeah. I mean, so I didn't have to quote I modify my food, even in the beginning to get hold of it. To get hold of how the insulin

Scott Benner 11:54
worked. Was there any kind of a honeymoon? Or did you have a pretty significant knee?

Denise 11:58
And actually, yeah, fast forward to it. i She's putting an urgent call to an urgent referral to the endocrine office. And they come back and said, We can see you in three and a half months. And then like, I come back, I'm like, yeah, no, that's not gonna work for me. All right. Mind you. I have a medically complex daughter. So yes, I do push the switches around. And they're like, No, but that's when we can get you in. I'm said, Excuse me. I was not just diagnosed as type two. I'm not taking some oral meds. I need to know what the heck I'm doing with this insulin. And you need to see me now. Yeah. And then I got it in three weeks. Do you

Scott Benner 12:33
think that because of your age, they just assumed you were trying to change practices at first, or did they know you were a new diagnosis?

Denise 12:41
No, they knew I was a new diagnosis. Because I didn't call my physician referred me over and said, I have this new diagnosis. All right. You put it in the referral and the endo office called me I didn't even call them I was

Scott Benner 12:52
trying to give them the benefit of the doubt. Yeah, I heard a stat yesterday I don't. I heard a stat and I'm going to tell you, I don't remember any of the numbers. But there are not endocrinologist in like a significant amount of counties in the country. In 2015, I needed support to start making this podcast and Omni pod was there. They bought my first ad in a year when the entire podcast got as many downloads as it probably got today. Um, the pod was there to support the show. And they have been every year for nine seasons. I want to thank them very much. And I want to ask you to check them out at Omni pod.com/juicebox. Arden has been getting her diabetes supplies from us med for three years, you can as well, US med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com to us Med and all the sponsors.

Denise 14:04
So it doesn't surprise me yes to again. I had a support network, my neighbor across the street to other families in that small school another. I had children with type one in another family in our neighborhood that also went to our church. The husband had been type one since he was like eight or nine and he was in my age range. So I had lots of resources right away. By the time I got to the endo office three weeks later, this goes back to your honeymoon. I'm like, okay, so I said, here's, here's my insulin. We figured out in the first week, my insulin to carb ratio, My correction factor all with no Basal insulin, no long acting insulin. And so I went in to meet virtually during COVID. I met with the CDE nutritionist first and then I met with a physician but the CDE said Yeah, I Okay, so we'll skip all what we usually tell you because you just told me your insulin to carb ratio. You just told me your correction factor you just told me. She's like, and then maybe in the next appointment, we can talk about technology. I'm like, no, no, no, I want a CGM. And she's like, Okay, well, there are two kinds. I'm like, Yeah, I know. And I know which one I want. And she goes, Okay, well, which one do you want? And I told her and she goes, Oh, good, because that's the one I would have recommended. I mean, so it all went different. But she told me she's like, you know, you will probably honeymoon. And actually, you may honeymoon forever. I mean, the, the way you've described your lifestyle and your food and stuff, you may. Yeah.

Scott Benner 15:38
adult onset sometimes can take forever. She might have thought maybe you but maybe she's a lot, a lot or something. Right.

Denise 15:44
And so, but I go back to I had labs six months before that were normal.

Scott Benner 15:49
Yeah. So the onset was really fast. I think the onset was really fast. Yeah. Also you the way you describe it. I don't think it was not just fast. But I don't think it had been very long either. Like when you when you look back, right? It wasn't something that lingered for you're here, correct? Yeah,

Denise 16:08
I'd say six to seven months that it was kind of building up. So interesting, though, then as we go back. So she's like, I think you might honeymoon forever. I think we may have you in this special box over here by yourself. You know that. But I think I'm coming out of it now. Because in the last few months, I noticed a difference with fat and protein. I mean, because before that fat and protein, I'm like, yeah, they could talk about this fat protein rise and Warsaw method and all this and I'm like, I don't see that. I don't see that in my lines. I don't see issues with that. But now, but now I'm starting to

Scott Benner 16:43
they're letting me out of that special box. So

Denise 16:47
I'm trying to claw my way back in to the mainstream here.

Scott Benner 16:50
So in your mind, what shape is the box?

Denise 16:53
In my mind? I think it's a very special diamond shaped box.

Scott Benner 16:57
Oh, that's lovely. I was thinking that Nirvana song heart but wait is that isn't Ivana song heart shaped box? Or is that a remake that nirvana? I

Denise 17:06
don't know. My husband's the music person in the family? I

Scott Benner 17:08
don't do I don't think it matters. Also, I think a lot of people listening are like, what's nirvana? Yeah, yeah. But I knew that I knew you're old like me. So I figured, yeah. So okay, so you're, you're married, you have kids? There's a lot going on in your life, this happens, not something you're expecting. How would you say you accepted the news?

Denise 17:30
So I mean, it's like, okay, fine, especially with my phone a friend, if this is what my life is, let me get this figured out. I am, as I described myself a type a firstborn, OCD control freak. So I'm like, Okay, I don't have mental space for this, because I got all this stuff going on with the other family members. So tell me what I need to do. Let me get this figured out. My walking buddy is an engineer math person, who's so we're like, okay, so she's like, I'll step you through. I mean, and so we got it figured out right? For me. I'm like, I don't have time to deal with it. So I just need to get it figured out, too. I found juicebox Facebook page. So diagnosed in January, how to CGM by mid February after fighting with the insurance for a couple three weeks. And then I started dash in May. Well, the CDE said I could start them both at the same time. And I said, Thank you. I've got a lot going on. I think I want to learn learn one thing and get it and get it figured out. And then I'll add something else in and I was fine. My doses were low enough with MDI that it wasn't like I was trying to push in tons 1015 units at a time. I mean, my Basal dose was four units. And if I was taking three to four units at a meal, because I also ate and still eat so low carb that I wasn't taking much in. So I'm like, the injections really aren't bothering me. Let me get the CGM. And I mean to tell you, I had it two days, and I had a sensor failure. And I put on a new sensor and then transmitter failed. And then I called my friends with these other families. And I'm like, I can't I don't have it. They're like, No, we told you you as soon as you got it, you were gonna love it. And you were gonna have a love hate relationship with it. Because as soon as it goes out, you're gonna go What do you mean? Where's my data? And finger breaking? You know, to get the trendline? I mean, within two or three days, my engineer brain is following that. trendline. Can I missed it?

Scott Benner 19:24
I have a question in the beginning when you had a failure of the device, right? Have you had a lot since then?

Denise 19:30
No, no, it was just a fluke thing at the transmit. I mean, so the sensors. I think maybe in the two and a half years, I've had two or three sensor failures total. So that first one, so not really, but I don't know why that transmitter failed sensor failure, user error. Listen,

Scott Benner 19:47
I wasn't there. Right. And this is anecdotal at best. Yeah. But a lot of the failures, I'm not that stuff doesn't fail. I'm not saying that. But a lot of the failures that I see online are very frequently with people who are newer to the equipment to

Denise 20:01
well, it was interesting because it didn't fit. It feels like on day three. Yeah. I mean, so it wasn't after an insertion. So then the sensor failed in, in. So I don't know if I damaged the transmitter trying to get it out. I don't, because then I put in a new sensor, and it started giving me a transmitter error. And I'm like, What the hell? Like no, no, no, the center was bad, not the transmitter, and I called support. And they're like, well, we can get you something in a week. I'm like, You don't understand. I just got this. And I don't have a backup yet. I've built a backup.

Scott Benner 20:33
Again, not to say that that's what happened to you just anecdotally, i That doesn't surprise me. Also, a favorite of mine is there is this person a couple of weeks ago in the Facebook group. And she's an adult, she hasn't had diabetes for very long. And she's like, there's something wrong with my pump, I'm going to change it changes that change. And by the time I'm watching this thread, she says, Well, I've changed my pump three times. And I'm like, I got it. And I was like, hey, stop doing that. I was like, every new site doesn't work great. You're just staying in this, like, just leave it on, push them insulin through it. And that's the thing you learn one day, and then that doesn't happen to you anymore. And it's just, I mean, it's very common. And again, not that this is what happened, because it doesn't sound like it is but when it's always interesting, when people then jump online, they go, this stuff doesn't work. And I'm like you've been using it for eight seconds. Why do you think you're the arbiter of what works or what doesn't? It's just interesting. That's all I

Denise 21:27
deal with that professionally, too. I'm an audiologist. And so then I'm prescribed hearing aids. And for the last 10 years, I've worked with the VA. And so then trying to explain technology and Bluetooth connections and medical devices. So so when I when I got the news that Oh, well. Yeah, don't update your your iOS yet, because we got to work out the bugs first. I'm like, Oh, well, yeah, of course. Because that happens in the hearing aid world, too. They're like, that makes sense. Used to answer my phone. And now it doesn't it rings different and why does it keep alarming every time I get a text message? And I'm like, okay, here, let me help you with your settings. So I mean, so I get that. And

Scott Benner 22:04
so I'm incredibly amused and managing. You're sitting in a room with an older person like yelling. It's Bluetooth. It's Bluetooth. It's how the phone connects. Can you hear me Bluetooth? Yeah.

Denise 22:16
So different hearing aids connect differently. So along that same line? So then I'm like, do you have an apple or an Android phone? Or do you use a flip phone? And they're like, I don't know. It's a Verizon phone? I'm like, yeah, yeah. And so I mean, I'm very much Okay, so now we do you have a computer? Yes. Okay. So you know, like Windows is part of it. And then you can have a, you know, a Dell computer and you get your cable service in your. So I don't want your service provider. I want the brand of your phone. You're already Verizon.

Scott Benner 22:48
Yeah, you're on my phone. This seven, the eight and the nine are in a line. Do you know which one that is?

Denise 22:55
I know. Right. So yeah. So so I get the work through the troubleshooting and stuff. So yeah, I don't know if that's what happened. But it was for sure knew, but it was for sure I was depending on that. And then. And then like, yeah, you won't care as much if a pump goes out as you will if that CGM goes out once you get rolling with this technology, and I totally agree with that.

Scott Benner 23:14
So where why did we have you on the podcast?

Denise 23:18
You reached out and I said I'm an adult? Who started on Omnipod five. Oh,

Scott Benner 23:23
so wait, but you're using dash now? No, no, no.

Denise 23:27
So I had the dash within a few months. So then I Okay, diagnosed in January of 21. CGM. I got a Dexcom in February of 21. Dash in May of 21. In Omnipod, five in June of 22.

Scott Benner 23:40
That is definitely why I wanted to have you on because to ask this question, but when you kept saying dash, I was like, oh, maybe she just went back? No,

Denise 23:48
no, no. So I switched that. No, that was just what I started with. Okay, so I started with, it was interesting, because the adult that I talked to in the neighbor, I mean, the my go to resource, I told I asked all of them, okay, so how long? Do I need to wait till I get a pump? And they're like, it's going to be six months, the insurance will make you and the doctor's office will make you and I'm like, Yeah, well, I don't know about that. I'll get it when I'm ready. Okay, but, okay. And so, in, I said, Tell me about the different kinds of pumps because I knew the families that had children, even high school aged children used Omnipod, which tubeless was very appealing to me. And then the adult use, I think he's Medtronic, he had a tube to pump. He had just switched to a TCM I think when I talked to him, okay. And so, he said, I said to what can tell me, I'm an information gatherer decision maker type. So I'm like, so tell me about tell me about tell me about and I said, So what time, what time, how long and what kind and he's like, you'll probably want a tube to pump because they'll hold more insulin. So you'll get 300 units into the cartridge versus a tube pump. You can only put 200 units and so that was probably cycled through faster. So you probably will end up getting a tube to pump like, Okay, file that away. And I'm like, Yeah, I want one of those. And then I'm looking at my charts and my data log and my paper and pencil notebook. Because I'm old, I did paper and pencil for about three months. And then I went to an app, one app for a few months. And then I switched over to sugar main app and tracked all of my exercise all of my carbs, all of my food and everything in there until I remember hearing you say, and I'm like, I don't know that I'll ever get them to type a and I'm like, yeah, no, I'm over it, tracking all of it. Like, yeah, no, that's about No, I'm in a way that learns a potato or because I eat carbs. So infrequently. Those I need a little more specificity and but he's like, you're gonna want the more insulin. I'm looking at my charts going, you know, right, even out of honeymoon in Bolus seen for fat and protein bumps to correct. I use about I can get the 80 hours and I use about 80 to 100 unit. Yeah, was that at our Ardens

Scott Benner 26:06
insulin to carb ratio is like one to 4.7 right now or something like that. And she doesn't have any trouble using it on the pod. It does. It does the 200 units doesn't run out and Shinto

Denise 26:16
minus one one to six right now.

Scott Benner 26:19
No, no, I

Denise 26:21
mean, I eat but I eat so look few carbs that it's like, I don't even I learned the hack on how to underfill them to begin with. So I wasn't throwing out

Scott Benner 26:32
your Facebook group, you think you only need ad units to initialize Nami pod? Is that right?

Denise 26:38
That's what they tell you. Okay.

Scott Benner 26:42
I don't know if I'm allowed to say what that what's

Denise 26:45
actually my my, my mom trainer, I had told her I'd heard about a hack. So maybe use a little bit she's like, we and again, I've worked in medical device. As an audiologist, I actually worked for a medical device company for about four years. So worked with the FDA FDA approval, so totally understand that process, too. I'm like, I understand you cannot support this. I also very quickly started putting my Dexcom other places when I saw that in European markets and other places it was approved. I'm like, Well, this is an FDA thing. So I'm going with that. But she said what I can tell you is when you hear the two beeps, you can stop. Right? Okay, so there is a way to get the two beeps to happen with less than 80 unit going

Scott Benner 27:29
slower. Interesting. going slower. Yeah, I'm never gonna,

Denise 27:33
she's like, I'm not gonna tell you how many units I'm just gonna tell you. You may stop when you hear the two beeps. I'm like, Thank you.

Scott Benner 27:37
Good enough. You just made me laugh. Arden had she's on g7 Now Dexcom g7. And she had one failure of it. And we were trying to figure out what happened. And so we were actually on the phone. She was a college I was home, we were like three way calling with Dexcom trying to work it out, like figure out what was going on. And the guy on the phone says, Where are you wearing it and Arden's like, like Oh my God. And he goes, it's not approved for their art and goes, You think my guess is the problem? And I'm like, This is hilarious. It's so we're on the phone. And. And he's like, he's like, Well, no, you're trying it on your arm. And she goes, I'm gonna put this on my arm to make him happy. She's texting me like outside of the things she does. But there's no way she's like, I have bigger problems If my guess is the problem. And I was like, okay, and it turns out it was not us. And but I mean, I think I think Ardens wanted Dexcom on our arms. I have four times in her life maybe, you know, like and she's been wearing it for years and years and years and years. So it's not FDA approved for where she wears it and it works terrific there. Right so what are you gonna do so on the pod five algorithm, but on a lower carb like lifestyle? So can you tell me how many carbs you eat in a day approximately? A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888721151 for a huge thanks to Omni pod. Not just my longest sponsor, but my first one Omni pod.com/juice box if you love the podcast, and you love to boost insulin pumps, this link is for you. omnipod.com/juice box, usually

Denise 29:37
probably on, quote heavy day where we're out at some kind of activity or celebration. Maybe 100 to 120 but on an average day, it's usually like 60 to 80 Okay, and how to fruits and vegetables and proteins is where most of that comes from

Scott Benner 29:55
and how active are you the course of a week.

Denise 29:58
I used to be more active because at my new position with the VA, I'm 100% remote seeing patients via telehealth so I now sit at my desk 40 hours a week before that I worked part time. And so I was up and about in the part time was in person patient care as an audiologist. So I was up and moving a whole lot more so not as active. So I have noticed a change in actually talked to my new supervisor and said, I think I need to make some changes here. And I may need to plan because I don't get up even to quote, go get the patient from the waiting room anymore. So I show finishing chart notes. So I'm sitting, we're in this 40 hours a week,

Scott Benner 30:40
I have an idea. Most people would say, get a standing desk, but that's an investment. What about one of those carts? Like it's a standing rolling thing, you're like, your laptop would go on it, there'd be a little bit of desk space in front of you. And you could like move around with it while you were walking. I don't

Denise 30:56
know, because I've got three monitors because I'm doing diagnostic testing. So I've got one that's a video audio feed. I've got one that's the remote computer where I'm running the audio metric equipment. I've got one where the charging is going.

Scott Benner 31:09
Oh, I didn't know you were very special. I didn't know you work at SpaceX. Okay.

Denise 31:13
Yeah, yeah, exactly. Right. So no, I worked for the federal government. That's who I worked for. Gotcha. I worked for the VA.

Scott Benner 31:21
Oh, nice. So I mean, it's a it's a great job. But yeah, you're gonna have to like, Hold

Denise 31:25
on, I need to build in breaks and stuff. I said, I'm noticing a difference.

Scott Benner 31:29
Have you seen? Have you seen the little pedals that you can put under your desk? No, but that

Denise 31:33
might work. Because that I mean, yeah. So I have noticed a difference. I was more active. So I do workouts and stuff. And I'm still doing those, but the day to day activity has gone down. Now

Scott Benner 31:43
I understand. Okay, well, but But So how was the device working for you? Because that's one of the things you hear people go like, well, I don't know, like, what if I'm very low, lower carb, like how's it going pristinely?

Denise 31:52
It works really well. And I'm, I'm after this trip contemplating a reset, but I was one who very quickly ascribed to your here, set your ranges and set your target. And so I again, I was pretty obsessive about my numbers and my math. And so when I was on the dash, I, you know, had those nighttime targets at 85. And I rode at 8587. All night. Yeah, I was very concerned, my a onesie was gonna go up. Because that's just a thing that we all worry about. It actually stayed the same. So I got the dash in June, my next a onesie was that following August, and it was exactly the same as the one six months before. Great for you. And then the next one went down. So even though it still says that it's targeting 110 I'm still holding my own in the mid to low fives.

Scott Benner 32:46
Well, good for you. And so Wow, how far did it drop? When when you saw the drop?

Denise 32:51
But not I mean, within those tolerances? I went from a five, four to a five one. Okay, so

Scott Benner 32:57
I mean, jeez, that's amazing, though. So that's a lot to do with your your diet. You think? I think so? Yeah. What do you eat mostly?

Denise 33:05
Fruits, vegetables and proteins and things. So I mean, I'll, I will eat and we will bake, but I'll bake with almond flour. So I am grain free. So no corn, soy, no corn chips, no flour. No wheat flour. No oats. No rice.

Scott Benner 33:21
Is that because of your inflammatory stuff? Yes. Okay. So

Denise 33:25
I was eating that way before the diagnosis. Yeah. So my number ratios, I'm still look to be most days. 3070. So 30%, basil. 70%? Well, I mean, so they are off. But yeah, I'm about sugar mate says I'm 90% in range with a range of 65 to 140. Oh, that's

Scott Benner 33:46
terrific. Good for you. Well, congratulations. That's really wonderful. You know, I so

Denise 33:52
it's been a learning curve. That was the thing I wanted families to know, I think coming at this as an adult, there was a huge shift, once I went MDI, to dash. And in a whole relearning, and it took almost a month to stabilize, again, mentally numbers ratios to kind of relearn the whole system and how my body is going to react with the variables. And then a year later, when I did it with Omnipod, five, it took, I think, three to four weeks before I settled in, and that's why I thought the agency that was just going to be a couple months later was going to be off, because there was absolutely a learning curve. Significantly more lows, significantly more highs, trying to kind of get it balanced.

Scott Benner 34:34
And it took you a few weeks to get it straight. Yeah.

Denise 34:37
Each shift. There was absolutely a learning curve

Scott Benner 34:40
on your own too. Right. Do you have anybody helping you? I mean, besides your walking buddy, my walking

Denise 34:45
buddy helped me and it was very interesting because once I started listening to the juice back so her daughter has married and grown and lives in another state. So and then we've got the other couple of families but it was once I started and I've been telling them all about juice box Once we started listening to juicebox, so I was in the Facebook group mid spring, somebody had recommended it in, I think, a Dexcom group. And so I was watching the Facebook group and I'm like, I don't do I don't have time to do podcasts. I got all this health appointments. I got these doctor's appointments. I don't have time to do podcasts. Yeah. And then I got a COVID vaccine. Right? And then I was laying in bed. And then I'm like, I got this. So like, I binged over those couple of days. And then I'm like, oh, no, I'm sold. I gotta find a way to make time to listen to these. Until then my support network, then we kind of transition she's like, and I'd say think she's like, wow, she's like, No, no, no, I think the student is being I think, you know, more now than I helped you with. I'm like, I couldn't really got started without you. So in some of those other families, I'm like, these things that I hear you saying that are problematic, or that you're concerned about or whatever? Maybe they weren't? Yeah, maybe maybe you can listen to and there might be some solutions. Check this out. I learned this here. Try this.

Scott Benner 36:01
That's so nice. I'm glad to hear that.

Denise 36:03
There are no I talked about you at the airport to like clear in security. And they saw my things. I'm like, oh, yeah, you know, I'm like, I'm like, get my CGM. And they're like, what about this? And what about that? I'm like, Yeah, but if you really want to learn, you need to check out this podcast. I write it on a sticky and handed out.

Scott Benner 36:17
You're very nice. Thank you so much. And probably part of what's happened been happening to me the past week, I have been recognized in public three times in six days in three different states. Really? Yeah. It flipped me out. Honestly. Yeah. happened in Georgia. at a gas station, it happened in South Carolina while driving on the highway. And they're

Denise 36:44
like that just box bumper sticker that that guy has, wait a minute, that's Scott driving,

Scott Benner 36:48
I swear to you a car like kind of drove by me a little and then it dropped back again. And then I looked over thinking like, Oh, I'm going to be shot. Because it was really, it was very strange, you know, and I just looked, and there's this gentleman there. And he's like, like, I think he was like pointing like I like pointing it himself. They pointed his ears and then pointed at me. I listen to you. And I was like, okay, and I thought, Well, that won't happen again for a while. And then we got back home, and art and needed makeup. So we were at the altar. And this, this lady is coming through the door. And she's got like, she's putting her phone in her pocket. But I noticed I just have we're walking to the register. And she's coming in the door. And I noticed that her flashlight was on when she stuffed her phone in her pocket. And we happen to intersect each other. And so I said, Excuse me, I noticed when you put your phone away through the flashlight was on. And I think she just thanked me and we got in line art and I paid and we're getting ready to walk out. And then she's sort of there again. And I was like, and she goes Excuse me? Do I know you? And like, but I'm close to home now. So I think like, I'm looking at her. She's like, Seriously, she's my ages. Yay. And I'm like trying to figure my way through that. I'm like, I don't I don't know, like where we're from. And she goes Facebook. And my first thought is I'm never on Facebook. But I'm never on Facebook is me. Like I'm on Facebook constantly managing the group, right? But my stupid brain just goes like, No, I don't I don't I don't really use Facebook. And then she just goes diabetes. And I went, Oh, yeah, you might know me from that. And then we chatted for a couple of minutes. And then we walked outside. And Arden goes, Yo man, if people are going to be recognizing you, you really have to like step up your game. He she's like your shirt doesn't even match your shorts, right? And I was like, Well, I was making the party all day. And then I took you to the altar so I could pay for your makeup. So like I'm like, like, just like just give me the money next time. Yeah, she's like, you want to dress better. She's like, you're dragging me down. If people are going to recognize you, they're going to then they're gonna see me and I was like, okay, she was an Ilocos. So like, I was like, alright, but anyway, thank you for for sharing the podcast with people so much. Honestly, when you're talking about it. It's so heartwarming to think of how well it works. But I have to tell you my brain almost immediately after it feels good switches to like, I'm like, Why can't you reach more people dummy? Like, like me, like, like, like, how do you get to I guess I can see the numbers in my head. Ya know how many devices everyday download the show how many episodes they grab, I hear your experience. And I think, Oh, I'm not reaching enough people, you know, but that's

Denise 39:34
the way of the world and that's the way of medical we do the same thing to do you know how many people who have hearing loss actually have hearing aids?

Scott Benner 39:40
Yeah. Or once they have them can use them and can use

Denise 39:44
them or how long it takes that that statistic last I read it it's like seven years from onset of when people know they have a hearing loss before they'll actually even try one and then if you can get it to get them out of the drawer, right. So I think it's the way of the world and

Scott Benner 39:58
I know it's not my fault and I also know the podcast overwhelmingly reaches more people than probably any other thing in this space, to be perfectly honest, but it still feels like it just still feels like you're not doing quite enough like because there's someone like you, not just someone like, Look, you had this circle of people around you who all were like telling you what to do, and saved

Denise 40:19
my life, literally and figuratively got me off on the right foot. I mean, I hear these horror stories of being misdiagnosed as an adult and in that could have been it could have gone that way very easily.

Scott Benner 40:31
But in a short enough amount of time. It's two years they're looking at you going wow, you know a lot about this. Yeah. Yeah. And then I think, why didn't reach any of them? Yeah, like, that's how it feels yet so, but we had, I mean, I don't know we're working on I'm getting old. Like, I gotta get to it now. Yeah. I

Denise 40:46
did have a couple other things that make my story interesting. The, the, oh, now I'm gonna have a total blank out. The survey, type one survey.

Scott Benner 41:00
The one I did? No. Exchange.

Denise 41:03
That's the one. Okay, so I did that before I found the podcast. But one of the things that they asked about that I'm like, Oh, see, I knew it. I knew I had to frozen shoulders. In 2018 2018. I ended up having surgery on one we couldn't get it going and the orthopedic I went back to the I said, as I'm still in PT, about four months, four weeks post op, I said, I think the other one's going he's like, No, I'm like, No, I think the other one's going No, I know my body I got he's like, that'd be very unusual. I'm like I get it I think and he looked at his like the other ones going saved myself a second surgery but so I had two frozen children's who's like you know, do you have any autoimmune things going on? I'm like, like, just the psoriasis as a kid I mean, on and off minor minor that kind of self treated with cortisone. After we learned what it was not major flares, but that in a little rosacea, and the endometriosis, I'm like, so no, not not major stuff. He's like, I think you need to talk to your GP, I think they need to look for some type of something because I wonder if there's something autoimmune because we don't see the two frozen shoulders. It's unusual. Like okay, so she did kind of a workup with just a basic sed rate and a Basic panel at that point to didn't find anything. Did we check for the five t one D antibodies? No. But then so I'm wondering even if that was predisposing again, if something was happening in that, I don't remember what they call it. Now. They don't call it pre diabetic. But if something had tripped in that I had the antibodies and there was damage being done but my pancreas was still cranking out enough insulin that I didn't

Scott Benner 42:48
where maybe the auto immune implications even from the major frozen shoulders led to the type one to what can you breathe still

Denise 42:58
the type one d the T Wendy exchange asked if as an adult if if I had had a history of frozen shoulder that they put that in the Okay, the red flags?

Scott Benner 43:08
Can you briefly describe what it was like the frozen shoulder? Yeah,

Denise 43:12
it so it literally is what it says so that it's something with the nerves and the capsule in the shoulder tightening up so that I couldn't move so I would get shooting tingling pain downs, my arms in gradually to avoid that I stopped moving is where the directions where that goes, right? Because that hurts. And so then I would get less and less range of motion. So I mean, I couldn't hardly move my arm at all on the first side. And so then basically what they do in the frozen shoulder surgery is they anesthetize you, so you don't feel it. And then yeah, busted around. Yeah, yep. I've heard and then so the other side started doing the tingling and stuff and he's like, no, no, it's the other side just fatigue because you're compensating and I'm like, I get that but I've also had six orthopedic surgeries on the ankles. I've got a fused ankle got a complex medical history with or the peds and I'm like, I know what my body feels like. And there's a difference between sore and pain and fatigue from overuse. I'm telling you, I'm getting a tingling in my fingertips again, and it's the same thing going on and he Chinese like you do have, like,

Scott Benner 44:17
what were the surgeries on your ankles for?

Denise 44:20
I had a congenital bone defect that there was an extra piece of bone that connected my heel to a part of my ankle. They started bothering me when I was 10 on one side. And then five or the peds later, I got a correct diagnosis when I was 16 went away to college. At that point, they told me it was probably in both ankles, but they didn't check the other side because it didn't hurt. They told me they could do surgery, they would have to fuse my ankle and it would be six months in a cast and my leg would forever be atrophied compared to the other and we're like yeah, we'll just grin and bear it a little bit longer. He's like, you know, I get the pain but if the pain is manageable with pain meds, let's wait The time I got to college and went to a big 10 campus, I was walking everywhere and activated in the other foot. It was not manageable when it's an orthopedic there who sent me to a specialist in Chicago who said, wow, you're kind of old for this. Usually we see this when people are 1011 12. I'm like, let me tell you my history. So I'm one surgery on the side that it only had been going for two or three years, and it took five surgeries, a fuse ankle, that didn't totally work. So they went in and broke some bones and realigned things and redid tendons. So

Scott Benner 45:31
wow, that's so crazy. How long have you laid off from that.

Denise 45:34
And by that point, I wasn't laid up six months, I was laid up six weeks. So I mean, I had a walking cast, I was able to bear weight. And three, four of the surgeries, I was able to bear weight coming straight out of the hospital. And on the other two, I was weight bearing within four weeks, and then a cast eight weeks, so crazy. So in those five years, medical technology had advanced enough that the grim prognosis that they gave me when I was 16. By the time I was 21, was not so grim. That's pretty

Scott Benner 46:04
great. Do you have any? Like, what are your better, like best tips for on the pod five? What have you learned along the way?

Denise 46:14
Um, I've learned exactly what you've said to trust what you know. And it's amount about a mountain timing. So that even though oh, this was one that I heard on one of your recent podcasts, so changing the numbers in automated mode, does it change anything, and I've decided that when I changed my insulin to carb ratio, it doesn't change the automated per se, and how much it micro Bolus is, but it does change what it predicts I need for a meal. Okay. So it changed, it changes what's in the calculator. So it changes how much I'm going to give myself yeah, so but I have not been afraid to override what it says, again, trust what you need to know. And so I know it's going to take some away, right away after I Bolus, it will stop there micro doses. So then I gotta calculate some of that into what I'm doing. So I have the autocorrection off. But if you use the calculator and use the CGM amount, you can only turn it off so far. So it still wants to take some away. And so I've learned to trust what I know is going to happen in either except depending on the activity level, except that reduction or say, no, no, I want the full amount.

Scott Benner 47:29
So you've just basically taken good practices and applied it to how the algorithm works.

Denise 47:34
Correct? Yes. Okay. I just recently listened. And I'm sorry, I don't remember anything. But the team player when I totally agree with that, the episode where the title was even a patent five as a team player, that, that I take what I know, and use that to make my life simpler. Again, just to give me more bandwidth to deal with the rest of the stuff that's in my life. Yeah,

Scott Benner 47:56
I think it's valuable if people can get out of their head that the any pump like me modifies what we're talking about, but any of them yeah, that are automated, that they're just gonna be perfect. And you're not gonna have to do anything. Like, if you can just get rid of that idea. At first, I think you're going to be much better off and then you know, do what you know is what works. And then when it's when it's smooth sailing, just enjoy it like overnight. I imagine your overnights are probably great with only about five, right? Yeah. And, you know, times away from like, heavy carbs are probably terrific stuff like that. Yep. Yeah, it's just what's

Denise 48:30
hard for me with the pump is that I don't eat heavy carbs. So when I want a gluten free piece of birthday cake, or my daughter has graduated from high school, if I wanted to have things because I don't have celiac, I know that these things that I avoid what they'll do to my body, but they're not life threatening or dangerous in the long term. I fully believe from all of my physicians and understanding of how my body works, that I have these food sensitivities and inflammations. Because of the decades that I took NSAIDs as anti inflammatories to manage the pain in my orthopedic issues. Oh, interesting. So my gut is not what we would prefer it to be working on healing that. And so I know what the food sent. And so corn will give me rashes on my elbows, arms and feet. I mean, so that I know what so if I choose to do it, just to enjoy what the group is doing, then I don't know what to do. I mean, because then I'm doing my best guess, but I don't have enough experience to know. How much do I give up front? How much do I give an hour later? And so that's where my spikes come from? Is just still I feel like I'm even though I'm several years in early days in the learning curve, because I don't eat that way often enough to know how to manage.

Scott Benner 49:51
Yeah, that's very interesting. And, you know, I just did, I mean, I just put up an episode today with the founder. of beta bionics. So they have that new islet bionic pancreas. Yeah. And we spoke for two hours. And it was clear what they did was they they made a device that can get your a one C to about a seven. But it's with almost no effort. And I realized as he was talking like at first I thought, oh, people are going to be like, Well, why don't why can't I do it for this? And then I just thought like, why are we talking about what it isn't? Like, like, look at what it is, is yeah, there are so many people living with double digit a one sees who are going to have terrible ends so much sooner than necessary. They can't, can't won't excetera of what doesn't matter the reasons, right? They're not getting diabetes, right? The way you're getting it. And you're telling me I put this thing on them? And yeah, their blood sugar's he said like, you might see spikes to 200, they might stay for a while, but they're gonna come down. And when it's all said and done, you might have an A one C around seven. And you know, and I thought, well, that's great. Like he's targeted a section of the population who's suffering greatly, who was never going to get relief. And you know, and I'm my thought was, is I don't want the online community are people who are doing, you know, like, who understand that the way you and I do to be like, well, that's not good enough like, for you. It's not good enough. It's an insane improvement for them. You know, and so, I don't know, like, I just think that it's important to talk about it that way. And I don't know if we have always so anyway,

Denise 51:32
support network. The other piece, I just had that note down here, too. Yeah, there were two other pieces as we're kind of looking at the end here. The other piece that made my case, I think, interesting, and a little bit of more of a stressor. When you asked how I accepted it, we had to get over one hurdle, which is my dad died of pancreatic cancer. So with this fairly sudden onset of mine, the endo did immediately once I got in and three weeks order a full CT and panel to make sure that that wasn't why my pancreas suddenly stopped

Scott Benner 52:04
working. Oh, good. Yeah, that was worth looking at. And I'm glad that wasn't. And then

Denise 52:08
once we got past that and went, Oh, no, that's not it, then then it was easier to accept. And then I do have a husband at home who is very helpful and does 95% of the cooking and so forth. But that has been a training piece to all my anti inflammatory. And then I'm like, No, but this matters. We finally had discussion when I'm like, no, no, no, you are balancing all this. And I so appreciate all of the cooking you do and all of the help in the grocery shopping and all of that, but, but you don't get to tell me that you just adjusted this a little bit, and it won't matter and it won't hurt because you don't know how much exercise I got that day, or what time the sun came out or what time my shower was, or if I just had a pot change or not. So I do most 90% of the management. But it's hard. Because I do 90% of the management in that 10% of the time I need help. He doesn't kind of like me with the carbs. He doesn't have the experience to help. Yeah, well, let's one to help. But he doesn't have

Scott Benner 53:06
a boy, you'll be training him his whole life.

Denise 53:07
Right. Now, so those were the last couple of things. I mean, the CT scan, and then the fact that Yeah, so I mean, I remember one time, he went to go get takeout for us. And I'm like, No, I need to eat. And this was early days within probably the first couple of months. And I think the first month I don't know, I think I was on MDI and he went to go get takeout. So I didn't dose before he went, but my numbers are all over. I'm like, I need to eat, I need to eat because my numbers are dropping. And I haven't dosed and I'm just in that honeymoon. And there was a problem at the store and his phone died because he's a boy and he didn't hadn't charged it. And so he's sitting in the Mexican restaurant getting ready to bring home food and have a margarita and I'm like, where is my food? And I can't call him and he came back and I'm like, You didn't you are gone an hour and 20 minutes and why were you gone? And he's like, why didn't you order takeout? And unlike, because I couldn't remember how my numbers had I mean, the brain fog that comes. That was the hardest part for me as an adult, especially a type a firstborn control freak, that I didn't seem that I noticed I have that mental fog, up bleeding on the uptick to diagnosis. But when we started bringing my numbers down, I remember very much trying to balance some of my daughter's medical records and my mom helping me and I'm going no, my brain hurts. No, I don't have a headache. I just I can't think

Scott Benner 54:28
Yeah, and that's something I am like, look what happens. Just one Margarita and look where you ended up.

Denise 54:33
I know, right? Yeah. I mean, I can't I can't think I mean, and so the loss of that, and I had no vision problems until they tried to break my sugars down. Yeah, that happens too. Right. So they said aren't wasn't your vision blurry before? I'm like, No, it didn't seem to change. It didn't. So as my sugars were rising pre diagnosis, I didn't notice a difference. But as soon as we tried to drop on my dead Yeah,

Scott Benner 54:57
I have a thing for you at the end here. So I want to ask you Before I get to that, if we've missed anything, or or No,

Denise 55:03
I knew you're gonna ask. So I threw those couple of things in about the CT scan and about my husband. So I'm good. That was my list.

Scott Benner 55:09
I'm gonna thank you for a second. Okay. You very much by mistake or the perfect person to be on this podcast today, and this is going to seem sad, but it is sad. But about two or three hours ago, I was woken up from a phone call that my mom was having a stroke. Oh, no, she's no your mom's had health. Yeah, she's in surgery right now they're removing a clot and talking to you really helped to pass this hour for me. I really, I really appreciate and because of your type a nature. I think when you started talking in the beginning, I thought, Oh, good. I'm not gonna have to talk too much. But at the same time, just having this conversation, I got lost in it a number of times, I forgot about what was going on. It was really helpful for me. And as I was, as I'm watching, I got people don't know like, I there's a timer running in front of me while we're talking. Right. So it counts up. Yep. And I know you're on a schedule here because you're you're you're on vacation, which is lovely of you to do this during vacation. I also like new, like that number is going to get to the end and I'm gonna, I'm gonna get back on the phone and get back on the phone and find out about my mom. So I am actually going to get off with you in a moment. I am going to I'm going to look oddly, I'm not choked up my my throat just I am going to look for flights and I am going to come and we're going to my brother and I are going to fly out to where my other brother is and see my mom. We have no idea what's going on. I spoke to the surgeon to make the last decision about what to do. We got this talk. We talked to my mom before she went into surgery. But anyway, this was really he did a really nice thing for me today. You don't know it. So thanks. Thank you. Thank you. Yeah, I appreciate it very much. If you hold on for one second, I'll check button this up for you. Yep.

Oh, a huge thanks to Denise for coming on the show and sharing her story with us. And I also want to thank Omni pod for being a longtime sponsor remind you that you go to Omni pod.com/juice box to learn more and get started. Don't forget about us med us med.com forward slash juicebox 888721151 For call or use the link. Get started today with us med if you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com