#531 After Dark: Diabetes Complications

ADULT TOPIC WARNING. Today's guest is an adult type 1 living with significant complications.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, friends, welcome to Episode 531 of the Juicebox Podcast.

incredibly proud of this podcast. I know that I tried my hardest to talk about every topic I can think of around diabetes, I don't want to leave anything out. But when we get to those things that people don't like to talk about so much the things that you kind of keep private. I put those in a series called afterdark. If you go to Juicebox Podcast comm and scroll down a little, you'll see a ton of afterdark episodes, and I think you should check them out. They're incredibly enlightening. Today's show is with Mike. And Mike has had Type One Diabetes for a very long time, as he will tell you in just a little bit. Mike also has a number of complications. And he is going to share with you his story and his complications today. I want you to be ready that this episode is honest, it's emotional, and it might make you upset. Mike felt very strongly about sharing this with all of you. And I was grateful and honored that he wanted to do it here. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. This episode of The Juicebox Podcast is brought to you by touched by type one. They're an organization doing wonderful things for people living with Type One Diabetes, find out more about them at touched by type one.org. You can also find them on Instagram, and Facebook. I'm pretty pleased with how my voice sounds. So I'm going to do one more. This episode is also sponsored by Omni pod. And you may be eligible for a free 30 day trial of the Omni pod dash. You can find out at Omni pod.com forward slash juice box by the way. There's no reason to wait for the next big thing because Omni pod has the Omni pod promise. And later in the episode, I'm going to tell you exactly what that is. My name is Mike. I live in San Diego. I've been type one. Whoa. Over 45 years now. And yeah. How old are you Mike? I just turned 55 today, okay. Oh, really? Congratulations.

Mike 2:38
Thank you. So I can now eat off the Denny's 55 plus menu.

Unknown Speaker 2:41
Things are really heading in your direction. Finally, you got to take the positives in this world was all the negatives.

Scott Benner 2:48
I didn't know our birthdays were so close to each other.

Mike 2:50
I know happy late birthday my my replacement service dog trainer, or my replacement service dog. The trainer was here working and we were pretty tied up so I didn't get a wish you Happy birthday. Happy belated birthday. Thank

Scott Benner 3:01
you very much and Happy birthday to you. We were five years apart and two days. That's pretty cool. Yeah. So Mike, you were on a how we episode for keto 409 or 96 or 96. There we go. Some other similar numbers for 96. And I would have to say months had gone by after that after we recorded it maybe. And I got a really I thought passionate email from you saying that you needed to come back on the show. And talk about complications and your and your life in general. So yeah, I think that's very brave. And I appreciate you wanting to do that.

Mike 3:45
Sure. I'm happy to do it. I'm happy to you know, explain to people it's kind of emotional for me when I start talking about so. Bear with me.

Scott Benner 3:59
I brought tissues to this one. Do you not have tissues? I have. I have short sleeves and the whole bottom of my shirt. I guess I guess for people who didn't hear you on how he just give them a couple of minutes. You know when about your diagnosis and how things were back then?

Mike 4:17
Sure. So back in the 70s when I was diagnosed, there was no meters no good insolence there was. Well, the I need to back up just a hair there for a quick second. So I was mis diagnosed by a general practitioner for over a year with an ulcer. Could because I had the symptoms of the doubling over stomach cramps. I guess that's when my body was attacking the beta cells of the pancreas for my understanding. So he diagnosed me with an ulcer. And he diagnosed my mom with being so mentally hard on me just as As a kid in general in life, that it stressed me out so much that caused me to have an ulcer which was farthest from the truth. I had a great loving mom a loving family.

Unknown Speaker 5:13
The

Mike 5:16
as the as the time progressed, I was getting obviously losing more and more weight. And they finally took me to the hospital because I was just skin and bones. They just they couldn't figure it out. Yeah. Wasn't a DK at that point. But I was close. Um, they said, I probably had a few more months, and I would have been in DK at that point. But it was funny. Wow, it's funny, but we're walking down the hall in the emergency room. And the doctor that was walking the other way to look at me, pointed to me and told my parents that kids are dying type one diabetic. And turns out, that's the doctor that came into the exam room and properly diagnose me. So at that time, things were pretty primitive. Again, like I said, there was no meters, no good answers, we had beef, and pork, and in and you would take the beef or pork insulin until you started getting resistant to it, then you would switch over to the other that you either or beef or pork until you are resistant to that and you kind of swap back and forth. If you got resistant to both of them, you're pretty much screwed at that point. So I was probably 500 the whole time I was a kid, because at that point, they viewed it if you weren't falling over, you were doing pretty good. And you did one shot a day you'd mix the insulin Can you had exchange rates at that time? example, breakfast, two starches, a dairy, a fat, and then lunch to kind of the same thing, you know, two or three starches for proteins. And that's how they kind of managed it. So I did, I was on one shot a day for till I was a teenager, and I went to type one backpacking camp at the doctors there. Finally switched me over to two shots a day. And again, no meters. No, no way to really monitor how much insulin you need. But I just I can remember it. At that point, when they switched me to two shots a day. How much better I felt so maybe I was I came down from 500 to 400? I don't know, we'll never know. I wonder

Scott Benner 7:35
Do you know why they somebody thought to introduce it? Was it just the new way to do it? And you were like the old one? Yeah,

Mike 7:42
I think there was doctors at the camp. They were younger doctors. And at at the time, from my understanding now of, you know, doctors and how they treated diabetics, they just they kept you. They basically kept you from not dying. And they they wouldn't they couldn't they wouldn't adjust. But that was their goal to keep you from dying. Immediately from a low, but not long term from complications. They there was just no. There was no way to tell but like, but as a teenager, the doctors at that point saw it was pretty antiquated for one shot a day. So they broke it up. So at least you had some more regular to cover dinner, instead of just covering dinner with whatever basil might be leftover from the end. Which I don't know if they really know what the peak on that was whether it was 12 hours, six hours, 24 hours. I don't know. I've I've looked back in that I can't find any good, solid documentation that kind of gives the duration of that like linty now or, you know, a trivia that's 48 hours down. I couldn't find any data on that. And at this point, doesn't matter. That's, that's over.

Scott Benner 8:59
It's gone. So what part of the 70s were you diagnosed?

Mike 9:04
mid 70s right around 7677. I remember the Freedom Train coming through. And it was like the summer before I was mis diagnosed. And then went through that school year and the summer after when I was properly diagnosed. And like I said, I've I've seen pictures from our vacations. We went on family vacation. We were fortunate enough to go for a few weeks every summer. And I just it was just skin and bones man like my my shirt was just literally hanging off my skeleton. Right and that's it was pretty sad.

Scott Benner 9:40
I think that's over five decades after someone figured out insulin that Yeah, that was still the the situation.

Mike 9:48
Did you know there was really no way to, to there was no home monitoring. I mean, I know hospitals at that time. Had glucometers but they're the only ones that really had them. And the reason they had them was if somebody came in passed out, were you a drunk? Or were you a type one diabetic, you know, passed out and

Scott Benner 10:09
they needed this thing to figure that out.

Mike 10:11
Yeah, they needed some way to quickly figure that out. So they weren't putting type one diabetics in the drunk tank, and then them dying. Right? Wow.

Scott Benner 10:20
So you live a long time with a really high blood sugar. Correct. And I'm going to kind of break your life up into segments, I think. Sure. So in the moment, do you know what's happening? Or is it just your life and there's no way to feel it or like, you know, you felt bad when you were on one shot today. Um,

Mike 10:45
I didn't know at the time because I really had nothing to judge it with because you, I was never in a lower range to feel like for instance, you know, 120 versus a 500. And your body kind of gets used to it. And I also remember, as a teenager in high school, originally, I have nothing wrong with private schools, but it wasn't my cup of tea. And I wanted to go back to the public school where all my friends were from growing up elementary school. So my mom agreed to let me go back to the public school, but I had to take up extracurricular activity. So I chose cross country and track perfect. Yeah. And I, I never had a low I never passed out. So that validates all the doctors of today's that. Yeah, you must have been 500 the whole time. Because we were running, you know, 1015 miles a day we got up to. And here's the wacky noodles part of this. My mom read in a runner's magazine that you should carbohydrate load before the day before race. So she'd make me not knowing this was a problem at the time. Again, loving mother, she made me a whole box of mac and cheese that I would eat for dinner the night before. A whole box of pasta. So I was carb carb loading without covering for insulin because there was no knowledge of covering it for insulin right?

Scott Benner 12:09
On top of all that, how did you run? Like, I guess you Really? So so for, I guess for people listening? Who are managing in today's world, the idea that you can be 500 and living for days and days and days or 400 or whatever, like that high high like that. Yeah. Is is probably confusing to them. it's inconceivable. Right, right. But really, you're in that moment. And for those years, your body's in an advanced state of aging. Basically, you're using up your life cycles faster than you should be correct. And your body had a way of making itself feel normal enough that you could function.

Mike 12:53
Correct. Yeah, the other thing, the doctor that diagnosed me when I was a kid, which I found out later in life that he told my mom that exercise equated to insulin. And anywhere I wanted to go like my friend's house that was several miles away in arcade at, you know, when I asked her Hey, can you run me over here? Well, ever since my diagnosis, she conveniently could never take me anywhere. She made me ride my bike, which that probably at that time was one of the best things for me. So which helped me in cross country and track and I still hold the record for the 100 at Christian Junior High this day. So I was in I wasn't top shape. I was just riding everywhere. So go figure I yeah, we we talked about that now with some of the like the just the therapists they see we you know, sports therapy and stuff. And it's just yeah, I think I think that her conveniently but making me go ride for that exercises. Insulin thing was probably extended. At that time. A lot of things.

Scott Benner 14:05
Yeah. But you're more time because she was driving your blood sugar down a little bit with the with the exercise and with you with all the running and everything. Yeah, which would take you right back to prior to insulin. When they started figuring out what was happening. They would just starve people and move them around. That's Yeah, yeah. That's how they would that's how they try to elongate your life. If you had type one before in something, you know, don't eat anything. And then just keep active and you're really just doing those things to stay alive. And so you are getting some function from that. Correct when? What happens next you go to college?

Mike 14:47
No, I went to automotive trade school at that time. So, first part of my life, I was a ASE certified auto mechanic. And again, just, you know, whatever insulin single dose they gave me on the day and at night, I was just taking an eating any and everything and there was no thought process behind it because there was still no. No monitoring, though. Right. I think there was a, I believe there was a meter at that time, but it took like two or five minutes to read. And what do you do with the information? Yeah. And at that point,

Scott Benner 15:30
if I'm remembering correctly, from our, our other conversation, is this the point in your life where you get fairly unhealthy in other ways? Yeah. Okay. Can you tell people about that?

Mike 15:41
Yeah, so moved to Florida, um, for with the girlfriend and, and her family. We love sailing, and it was warm water there. So, you know, we're, we're drinking and you know, eating whatever, because there's really never been told not to. And there's been no great information to Hey, you need to do these things to take care of yourself. So the doctor I saw at that time, because I knew I needed to insulin insulin was life, you could buy syringes over the counter, so I was basically seeing him for the prescription for insulin. And I was really overweight. I'm five 511. I was like 245 fish, 250 overweight, and he finally one day going to get my prescription said that you really need to do better in your life. And I'm like, okay, like, you know, get a desk job or something. To buy cars. Yeah. So he said, No, diabetes wise. He said, I'm going to send you to see this person who I'm still lifelong friends with today. See this person, if I get back good information from this person, that your will start taking care of yourself, I will keep prescribing you insulin will check in the hospital if you if I get bad information from this person. No doctor in South Florida will see you I will. I will ban you from seeing any doctor in South Florida through the medical profession, or however he worded that at that time. So I'm thinking insulin life and no insulin, not life.

Scott Benner 17:29
This next guy is gonna get to tell me whatever he wants.

Mike 17:32
Yeah, so. So I went saw the person it was at diabetes treatment centers they had at the hospitals at that time. And she scared the bejesus out of me. If you want to put any other explicit award in there, you could go ahead and do that and bleep it out. So I, I checked, I got checked in the hospital. At that point, they checked you in for like seven days to regulate you quote unquote, I'm doing air quotes, as you can see, regulate you, as best they can and got my first meter. And I took it serious. I was on multiple injections at that time, MDI. And some pumps were considered experimental. So after that week in the hospital, I continue to strive, I, you know, hung out at the diabetes treatment center, the support groups got within at that time in the community, which made me feel really good about things started eating healthier. And the next thing was I needed to lose weight. And he said, You got to start doing some exercise. And I was working for an accurate dealership at the time. And a parts manager raced amateur bicycles. And he invited me to come out and cycle with them, you know, to try to help them lose weight. And so I bought my first bike that month, wrote over a little over 1000 miles and lost like 45 pounds. Plus that first month so Geez. I'm an I'm an all or nothing guy. In case you anybody that you know, I I don't just dabble in anything.

Scott Benner 19:15
Well, let me let me ask you a couple questions. So you basically are living in your will tell me tell me how old you are when you met this. The Second Doctor? I was in my early 20s. Okay. So early 20s. As you're young, you're a mechanic. You're living, you're sailing, you're screwing around with your boyfriend and eating whatever you want. And drinking. You said drinking I'm assuming you meant beer and stuff like that. Yeah. So just beer. Yeah. Just beer. Was it a rapid weight gain for you or no. through high school?

Mike 19:54
Weight Gain was at Well, when I was in high school running cross country and track I was like, you know Just a rail. And I got in a really bad car crash. I was in the backseat of a little, little Honda Civic, I think it was. And we have these mountains out here. And one of the cool thing is to do, which is really not cool is to go on the mountain, turn your lights out and scare the crap out everybody in the car, you know, and try to anticipate the curve you made. So this girl was driving, and she wasn't a good driver, but I'm in the backseat. You know, I should have said something but didn't because I'm with my friend trying to protect her. We grew up as his neighbor, kids. And we went off the mountain airborne into a tree. And luckily, the tree, the tree branches, as we landed about mid tree, I went back and looked at it afterwards. And it was probably the tree was taller than a two story. Not true story but a one story house. So but between that so landed in that the impacts lifted me up. And of course no seatbelts at the time. So I broke both my ankles shattered my shoulder. As the car fell down. It was pretty gentle fall through the limbs until we hit the ground. It was in front of somebody that we hobbled, hobbled in there and help. Mike, is it possible that Steven Spielberg

Scott Benner 21:24
has stolen a portion of your life story for Jurassic Park and you're owed money?

Mike 21:28
I didn't think of that. But anyways, after I healed, I went out, did six miles with the because at that point, the guy's team was running 10 to 15. And I was trying to get back into it. I did six mile loop and I hurt so bad. I never ran after that again. And it was from that progression. Through my early 20s. I started gaining weight because I was just, you know, right. You know, I could eat a whole large extra large deep dish pizza and was setting myself. So when we go to pizzas, we get three or four pizzas with the family.

Scott Benner 22:05
Well, okay, so take me into that room in your 20s. What does that doctor who scares you? What is what do they say to you?

Mike 22:12
But basically the doctor, the doctor or the diabetes treatment center,

Scott Benner 22:16
the treatment center. I'm sorry.

Mike 22:18
Oh, so she will cut to the quick. Sure. first statement was you got a girlfriend? Yeah. You like having sex? Yeah. Well, if you want to keep having sex, you better start taking care of yourself. Because that's the first thing is probably going to go No, not probably will go. That grabs the young man's attention really quick, like, literally by the short hairs.

Scott Benner 22:46
Like I did not recognize that erectile dysfunction is gonna be what you started with today?

Mike 22:51
No, but she just flat out. It was just I think I turned 50 shades of white. Right? Because it was just like, oh my god. Yeah, no, we know what, no, let's

Scott Benner 23:02
fix this quickly.

Mike 23:04
Yeah, that was when can we check me into the hospital where we have to have the doctor's note first. Can we call him now?

Scott Benner 23:10
Yeah, my ankles are fine. Can I go for a walk? So she hit you with that as a side effect of unregulated blood sugars.

Mike 23:21
Correct. Okay. And she said at that point, it had no age limit. It was just, it could happen to you tomorrow. Or, you know, the better care you take of yourself. Let's just say it could never happen. But at your rate, it will in that

Scott Benner 23:35
moment. Five seconds before that. Did you think of yourself as a person with unregulated blood sugars?

Mike 23:43
No, not at all. Matter of fact, I there was. You could go through the drive thru there. I won't say the name of the place. But you could get and I got fried the fried shrimp platter with two Coors lights to go through the drive thru window

Scott Benner 23:56
on your way to the diabetes treatment center. Yeah.

Mike 24:02
So I got fried shrimp, french fries, a couple of beers. I didn't drink them while I was driving, but I drank him in the parking lot.

Scott Benner 24:07
And that wasn't a goodbye to health because you didn't think that's what was happening. This is just a common way you would have eaten. Yeah, yeah. Yeah. Not on a work day. But yeah, I have I have a question or a jump ahead for half a second because I know you now. Yeah, no, I mean, we're not. I don't know you. Well, but I know you. And we communicate. Yeah, right. You don't seem like that person. Was it youth? Was it the high blood sugar's

that was just how I live just how you live. It's just what how things occurred to you and that's what you did.

Mike 24:41
Yeah, cuz, you know, we take the sailboat out for the weekend, you know, couple of 12 packs of beers. You know, maybe after after work, we take the sailboat out or the motorboat and you know, beer was always involved. You know, you go out for pizza have a couple beers. I I will preface this. I never drink and drive drunk. You know, a couple of three beers was about it. But when we be out on the water, we get pretty sloshed. But, you know, sailboat and go so fast.

Scott Benner 25:14
So you got to find your excitement somewhere else. Okay, alright, so she hits you with EDI. Anything else.

That was that was the opening closing statement. It's not needed. She started she's like, there's other stuff like, Nah, I'm good. I'm gonna do it. So she said they were good. You want to hear about the heart disease? Nope, don't care. I'm not gonna make it that far. No, there was heart disease involved at that point, learn that later. So they check you in. And they get you basically, it's a blood sugar detox, I guess for the lack of a better term to the day teach you about food, what happens in that time.

Mike 25:54
So they didn't really teach you about foods, they were still using the exchange rate at that point. So you know, a starches, you know, slice of bread, it's a mashed potatoes, it's about the size, the palm of your hand, a dinner roll. And you kind of went on that. And so I tried I diligently again, as I say, I'm all or nothing, if I know better. So I went into it with, you know, eyes wide open and really focused on doing the best I could had a meter. So I was, you know, test before breakfast, lunch and dinner. So you know that that's what the doctor told me to do. That's what I did. Do you

Scott Benner 26:35
remember any of those early blood sugar tests?

Mike 26:42
Yeah, you know, you know, in the high, one hundreds, low 200 was not uncommon and was praised, you know, you're doing great. And then, like I said, I didn't do the two hour test. I didn't, I wasn't told to. So I was told that I was doing good. I was now in control. I do not remember my a one C's at the time, but they're not what I've got now. They were probably, you know, under 12, maybe 11. I can't remember. But right at that time, whatever the ADA recommendation was, I was considered compliant.

Scott Benner 27:23
Okay. And so how long does this phase of your life with blood sugar's last?

Mike 27:30
Well, so because I was writing, exercising, and I was no Lance Armstrong, or, you know, Tour de France qualifier, but I held my own. And there was a group there, that was out of the Mike cyclery bicycle store just happen to be, and they call themselves to Mike's group. And it wasn't for me, those were the hardcore local guys. And they met early, like five in the morning to go train, and they would, you know, you'd get a 40 5060 mile hardcore workout before work. And on the MDI, I get up at set my alarm get up at two Bolus or inject, go to sleep for an hour, wake up at three, I would eat, and then wake up at five. And depending on my blood sugar, I would either go work out, or, you know, I couldn't because it was kind of out of whack. Being either too high, or what I thought at that point wasn't high enough to go do the strenuous workout. And by, by default of doing the same thing, seven days a week, every morning, I was able to get my breakfast style then so I could do those workouts. And then this is where I progressed to. I wanted to get an insulin pump because I was taking so many injections throughout the day cuz I ride do the hard workout before work. I'd ride my bike to work. I go right, you know, an hour at lunch hard. I'd ride home. So I was doing more and more and more exercises and picking up more and more of these little group kind of heavy workouts and the MDI was getting to be too hard. So I wanted to get on an insulin pump. I asked my doctor and he said, No, no, no, there's just there's there's two high risk for, you know, decay, infection and hospitalization and they're experimental. I don't have it anybody on one. So I did. It took me about six months, begging and pleading him. And I found the only type one diabetic at that time. Who did the Iron Man in Ohio or Ohio, Hawaii. That was on an insulin pump. And that was the straw that broke the camel's Back of his Okay, I'll let you try this. And it worked out really good. Yeah, um, you know, I still didn't have stellar, you know, a one sees that we have today. But in that time, that worked out really good because I didn't have the long acting, floating around in there, right? You know, just had the basil, and then kind of make some adjustments, and I ate a lot of Fig Newtons at that time, because they're 11 grams of carb each, I could figure out what that was going to be for the next two hours of, you know, either strenuous or non strenuous workout, and that, in fact, I had charts and graphs at that time of just about every food, the grocery store sold, what the carbs were, well, how much insulin it needed. Again, the all or nothing guy.

Scott Benner 30:45
I it's funny you say, say that, but I keep thinking. Nobody told you. And maybe nobody knew. But I mean, I think you would have done it if you would have known.

Mike 30:55
Oh, yeah. 100% had I know. Yeah, I would have been doing it. But again, he just I get my prescription see naxian you know, three months, whatever. And tell he finally just said this is insane. This and you're just killing yourself?

Scott Benner 31:10
Well, so now you're riding your bike, and you're in you lost. I mean, it sounds like you lost a lot of weight and one swing. Yeah, yeah. Okay. And now you're living like this higher a one season we would think of now as being okay, but it was way better than what was happening is a huge improvement, etc. in your mind, you're out of the woods, right?

Mike 31:30
Oh, yeah, my mind. I'm golden. I'm gonna avoid any complications, any long term effects. And really, at that point, nobody really talked about it. It was, I don't want to say it was the unspoken. But if I look back, it was kind of the unspoken, nobody talked about it unless you were anybody had the amputation? Is that what you're diabetic? You know, my uncle lost his leg. And you can hear that story from every Oh, thanks. Great. Um, but, you know, being type one, at that time, you were considered able to control it, you were the lucky diabetic, because if you wanted to take care of it, you could, which is further from the truth. But

Scott Benner 32:09
so, you know, from your diagnosis to this time, where you're, you've got the mean, from your diagnosis from one shot a day to two shots a day to, you know, the weight gain to the intervention, I'll call it to, you know, getting on a pump and having stability at eight. What do you think those agencies back then were on that first pump? Nine, eight.

Mike 32:33
I don't think it was eight, it was probably nine between nine and 11, I would imagine because, you know, you go out to do a time trial. And, you know, you might, you know, jack yourself up to 300 before you go out to do the right the the event. Same thing with a mountain bike race, you know, you're not going to start a mountain bike race at that time at 150. you're you're you're going to crash. Okay. So I have a Camelback that I had a go ahead.

Scott Benner 33:00
I just wonder how much time it was from your diagnosis to this time in your life. Like today time, then to that time, would that pump those 11 a one sees from your diagnosis?

Mike 33:12
Oh, I was probably it was pretty quick. So what's even what the multi the MDI that time was the intervention period. I pretty quickly came down to that it was probably months. Once I started exercising, and put that getting into the local amateur bike racing, amateur mountain bike racing and the weekend group rides. Okay, so I've been really physical I could I was doing 300 plus a week, easily,

Scott Benner 33:42
and you're in your mid 20s by that or no still early.

Mike 33:47
I'm in the middle, my late early starting on my mid,

Scott Benner 33:50
okay. And you're diagnosed again at how old? like eight or nine and are between nine and 10. Okay, so fair to say about 15 years of your life is spent at least over on 11 a one C and, and going this whole process that you just described? Yes, right now from that point into I'm sorry, I feel like I'm I feel like the bad guy in the story for some reason. But from that point until your first complication, how long is it and what is that first one?

Mike 34:28
So my first noticeable complication, and I was I've been a type one diabetic Test, test monkey for new drugs and, and apparatuses for, oh 2530 years. And this has to be I'm trying to think of numbers here. I'm not. So this is before my trophy wife now. After I moved back to, so this is around. Right around 2000, maybe one of the studies I was signing up for was people, people with or without neuropathy of known degree, there was a beat, excuse me a pill that they were going to give you for a year or whatever it was to see if once they measured your neuropathy and your lower like, your own or between your foot, and like your calf, they did a measurement. And whatever that was, there was a there was a your inner out parameter. kind of go no go. And they would measure that over the year to see what the improvement was. So they had an electrode on my calf, like it was a, what are they called acupuncture needles, it's how they had the probe in there on your nerve, and they would fire that nerve, and they measured it somewhere in the bottom of your foot. And I'm not looking at what you know, cuz I'm laying on a table, you know, on my belly, and this guy is doing this measurement, feats, you know, straight out, you know, knee bent up, and he's doing this and doing this and spend a little bit time and he's, you know, he kept asking me, are you okay? Yeah, yeah, man, I'm fine. It is okay. Are you sure you're okay? So Yeah, why? And he goes,

Scott Benner 36:42
when you use my links for the sponsors, you're helping the podcast. And I appreciate when you listen to the ads. So earlier I mentioned you may be eligible for a free 30 day trial of the Omni pod dash, that's a tubeless insulin pump. All you have to do is go to Omni pod comm Ford slash juice box to find out if you are eligible and to get started. But if you're sitting there right now thinking, that's okay, Scott, I'm going to wait for the next big thing from Omni pod. And then I'm going to get going. Well, here's the thing about that you don't need to. Because of the Omni pod promise, you can upgrade to Omni pods latest technologies for no additional cost as soon as they're available to you and covered by insurance. Now terms and conditions apply. But you can find out more about that as well. At Omni pod comm forward slash juice box. So if you're excited to get started with tubeless insulin pumping with the Omni pod, you don't have to wait. Here's some of the things you're going to get out of this. You can bave or swim with an omni pod on. So that means no disconnecting for those activities, which means no high blood sugars later from not having your insulin. You can also wear it on the pod while you're playing soccer, lacrosse, going for a run a bike ride, making dinner, running through the house yelling it's raining close the windows. I'm just saying you like you won't get tubing cut on like door handles and drawers and things like that. Because on the pot doesn't have tubing. So if you've been waiting, there's no need to wait. And if you're using MDI right now and thinking I would like that, Scott, I'd like to be able to set a Temp Basal increase when I'm having pizza or extended Bolus, or, you know, I don't want to give myself six injections at a big meal because I'm like, Oh, I'm gonna have a little more I give myself a little more than just push a button and boom Here comes right through your Omnipod if that sounds good to you. If you want to use the insulin pump that my daughter has been wearing since she was four years old, go to Omni pod.com forward slash juice box there are links in the show notes of your podcast player links at Juicebox Podcast comm where you can just type it into a browser on the pod comm forward slash juice box. Last thing before we go, I want to thank touched by type one for being a longtime sponsor of the podcast touched by type one is an organization who is helping people with type one diabetes. All they want you to do is learn more about them. That's pretty simple. And you can do that at touched by type one.org. Alright, I'm going to get you back to Mike now.

Mike 39:41
He kept asking me Are you okay? I've got this thing cranked up and I cannot get a response. Well, what does that mean? It goes, you've got serious, serious, serious, lower neuropathy. And like that can't be true. I can feel he called fuzzy carpet. And he goes no. So my nurse practitioner at that time who I saw as my doctor, quote, unquote, she also did research with the use UCSD VA where a lot of the research was performed. And she kind of just got the result. We're talking about skills now. I'm sorry, I didn't know this things were that bad. I'm like, What do you mean that bad? And I did it. The levity of it didn't hit me. Because I'm thinking that's wrong. I can feel you know, again, hot, cold water. You know, I still I can feel everything. So I, I dismissed it, as you know, kind of whatever. But looking back on that now is, um, yeah, I guess that was kind of harder to take when I look back at it, but I just I blocked it. I'm sorry. You're fine. Um, I guess I just blocked it out in my mind thinking that this this is This can't be true. So that was the first. That was the first on record, I guess you could say, yeah. Results of a test. And that was all because I was, you know, going to do studies.

Scott Benner 41:23
So that's about 25 years in to your life with type one. And literally over 20 years ago now. Yeah. Yeah. Do the, does that progress in a way that's measurable? Or do you just notice one day that it's worse or how does that go?

Mike 41:43
I it's hard to say. Again, I still dismissed it, thinking that they were wrong. But again, it was a machine. They measured it. So yeah, I don't know. I still did a bunch dozens of more studies on different drugs and different things. But that was the first one had a measurement that couldn't do the study. And I noticed there was a you know, something was going down.

Scott Benner 42:20
Well, okay. What's the next thing that happens?

Mike 42:25
Next noticeable? Which I didn't know. And in the, in the meantime, I've had, do you know what the dupa Chin contractures are? No. So duper contracture a lot of people call it trigger finger. But it's not trigger finger trigger fingers, you're using your finger, and it locks. Okay, it's painful. And then it at some point, it straightens up a duplicate contracture, it's really common and type one diabetics, they don't know why, other than they believe it's something to do with the synthetic insulin, but it's basically a growth of collagen weed that goes around your tendons, nerves, and starts pulling your fingers down in a lock so that they want to extend past a certain point, okay. And I've had several on my left hand, and my left Pinky. The last one I did, I had by done by a hand specialist who turned out to be a butcher. And you can see, I don't have a pinky, right? He did the repair, cut the nerve, did it write it in hand therapy. And the nerve repair popped in my finger got stuck at an angle like that, and it would get caught in places. Wow. And for the record, for those of you can't see me, it was bent over more than halfway toward my palm. But it would flex to my palm, but it wouldn't flex past. So as I'm working on a car or something, you squeeze it in somewhere and you figure can't pull out. Oh my gosh, the now you got to get a screwdriver or something in there, pack the crap out of your finger trying to get it bit down your palm and pull out. So that's why they ended up amputating that one at the so they took two thirds off. So

Scott Benner 44:22
I got the nub to two thirds of your left hand pinky is gone. Correct? Right. Okay. Here it is. Yeah, I just want to make sure people understand.

Mike 44:32
Yeah, I believe that's the distal phalanges. I think they call it No, I don't know. But it's one of those phalanges it's I can only count to four and a third on my left hand.

Scott Benner 44:47
But if you hold up both your fingers you can get the eight and a half.

Mike 44:50
Yeah, yeah, cuz I recently lost my other one. But one of the things the complications I felt next After the feet, the finger as I started getting really bad frozen shoulder on my right side to start with, so you'd throw a frisbee or something. It'd be like, Ah, you know, just be that thing at different times.

Scott Benner 45:18
Is there anything they can do for that,

Mike 45:20
uh, when it gets so bad? Well, they can inject steroids, but you know, steroids does. So a type one, so they can go in there. And when it gets to a point, you can't move it and clean it out. I went to the shoulder doctor, and he said, Oh, also my right biceps. The the part, the neuropathy, whatever you wanna call it, it crystallizes the muscles, tendons, and nerves. So when that happens, and you move your arm out real quick, that rips. And that ripping of the crystallization is just painful. That that's a problem. I'm trying to think of. I'm trying to think of the progression of the other complications. So I work with my hands. I'm no longer a auto mechanic, but I'm a piano and incident repair technician. So I'm still working with my hands. And it was several years ago. My mic, as I'm working with my hands, my fingers would just lock up in these contorted positions. And at any given time, and I would drop the tool I'm working with, I'd asked my hand therapist or my hand, my hand doctor, specialist, what what's causing it? Do I have arthritis? And he says, No, you don't have arthritis. Why is the locking up? He's I have no idea why they're locking up. But that that will get worse and worse. And worse, and then recently diagnosed as severe neuropathy. Yeah.

Scott Benner 47:06
When did the brain fog come?

Mike 47:08
Oh, gosh. So the brain fog. So here's what most of my type one buddies my age. We, we can't diabetic drop out. You're talking and, and you you've, you forget where you were talking about or the word or whatever. And that was that that was happening over the years. But that was also it's basically also if

Scott Benner 47:51
you want to take a break.

Mike 47:53
Now, all right, it's the up the crystallization of your fine blood cells in your, in your brain? which they've recently basically it's, it's, it's basically Alzheimer's, there's nothing you could say, Alright, that's what it really gets for I think about that. But they I still haven't had the MRI yet. Because I don't, I don't want to know that. I don't want to know the results. About what what the measurement of it is. You can't take all simers meds because the side effects are harder on you, then what the benefit might be. But that's just years and years of, you know, out of control blood sugars. But there's nothing nothing we can do. We didn't know about it. They didn't know about it. You know, 2030 years ago. This is something there's there's puppies and kittens, puppies and kittens, puppies and kittens. Um

Scott Benner 49:06
Can I ask you why you wanted to do this?

Mike 49:10
Yeah. I hear so often from from people who are newly diagnosed the past few years. If there was ever a time to be diagnosed, now's the time. Sorry, both my sleeves should have a long sleeve shirt but hot out but yeah, so. And it really what really tied this all together is I used to say, you know, it's pretty good time to be diagnosed with diabetes. I've volunteered in a lot of kids ski camps that I can't do anymore because of my neuropathy, but just letting people know that it's pretty good time. Now, fast forward, back forward a little bit. As you know, I started listening to you. When COVID hit, and I started First off, employed bumping nudge. And I got down to the, the high, low six, high fives just with that regular diet. That's figured out stuff. And then that's when I decided to go keto, not because of the juice box method, but it just seemed like something to do easy to do. I love barbecue. And then when we did our first recording, back in October, I was that I believe it was five, seven. Since then, I've been rocking a solid five, five. And then that's when it tied in. to, to myself, and why I wanted to do this. So the parents of kids nowadays, to give them some relief, that by once you learn how to use insulin, and I will say until I listened to your podcasts, your gift to the world, whatever you want to call it. I never really knew how to use insulin, if you really want to take it because the doctors are Oh yeah, your seven your eight, don't eight, five, you know, it's just, it's, that's still not healthy, that's long term. No good. But by keeping good agencies and keeping in the low fives, even at a low six, my heart of hearts, my belief and talking with my neurologists, you're gonna avoid all that you're not going to have

Unknown Speaker 51:53
this

Mike 51:56
this stuff happened to you. You know, when you think about your sandblaster you know, vision that's just that just hits home and feeling the salt, the sugar crystals, it's like, duh. But I really wanted to give some comfort to these new parents and I see it all the time on the on the Facebook group, you know, diagnosed you know, four months ago, a when he was five, seven, you know, it's like, you can get it, you can grasp it, you can live a life without complications. And there's no doctor in the world that will tell you that. And that's what's both. Sorry, that just No, you're fine. Please, you kidding me? You can say whatever you want. But it's it. It took a non diabetic and a non doctor to figure this out and share this with the world to you know, you can do this without the complications if you you know, do the 88 recommendations seven to eight. You're gonna have something happen to you, man. Yeah. And as of now 55 years old. I'm having to go out on disability because like, I can't work who my shoulders, my hands. So I had to have my, my right hand, my right pinky advocated a few months back, they'd fix that dupa trend several times. And within a year, it kept coming back. The blood supply on the outer finger was compromised. So there's just no way to do another surgery. Right? I just wouldn't live. So now I'm doubled up. But in that hand therapy, so you do a grip test. And I've always been in the 95. And that's an average average male, between 9095 100 and this last grip test I did, which proves my point I I can't even open a Gatorade bottle. It was 20. Wow. How quickly did that drop off happen? Hey, it happened over the last couple of years. It started getting really bad. But it was just a progression from all the years gone by. They did a upper and lower neuropathy test where they do same thing with the acupuncture needle and they electrically they started your hip and they go down and it's on this little speaker. I don't know the name of the procedure but it's as they're working the way down. When the nerves are firing here, this should be noise on the on the speaker and the closer they got to my knee the the quieter it got once they got below my knee it was dead silent you know I used to we used to walk miles and miles and hike I I can do about two miles maybe on a walk. I walk with a walking stick now. And that's not hard pavement. You know we don't hike anymore. I just can't.

Scott Benner 55:34
Yeah, hurts too much. Is the issues you're having relegated to your extremities? Or have you willfully not been looking internally at yourself or what what is the rest of it? Like? mean physically or mentally? I was gonna get to mentally in a second I metaphysically first.

Mike 55:52
Yeah, physically. Um, yeah, it's just the neuropathy is so bad at this point. Um, you know, I can step on a it's like the Princess and the Pea by step by a little pebble with bare feet, man. It's just it's excruciating. Wow.

Scott Benner 56:10
Yeah, I guess I mean, I feel compelled to ask you about, like, how? How do you manage? Seeing cuz I mean, what's really happening is you're seeing aging happening happen at an accelerated rate. Yeah,

Mike 56:28
I thought the wheels wouldn't fall off till my late 60s, early 70s. That happened a whole lot quicker. I had jet fuel to me, I guess.

Scott Benner 56:39
Well, immediate, even really. I mean, I hate to talk about it like this, but it must be frustrating for you. Because now looking back and understanding where your blood sugars are, your body really was resilient. Honestly, to get you this far. And I mean, am I wrong, but it can't hate. I hate asking this but

Mike 56:58
ask anything. I'm an open book do you play or to tell I'll be or whatever people need to hear this. They need to. It was hushed and shushed and everything was behind, you know, don't talk about that. So, people need to hear the truth and why it is so crucial to live the way you have are living and of these other people that are in their fives. Yeah, you're going to get to 160 but you're not hanging out there for four or five hours, not the excursion. It's okay to be 300 for seven hours. No, no, it's not.

Unknown Speaker 57:36
But do you play?

Mike 57:37
What if ever, do you ever think about? Like, what if you learned it sooner? Oh, 100 Yeah, every 24 hours a day. You can't avoid it. I imagine right? You can't Well, it was really bad there man. I was I was so spun out. Especially after I lost my right finger that oh my god would have you know, what am I gonna do? And you know, what am I gonna do? You know, my wife? What are you gonna do when I die? And if What if I die? It's like, I was just a such a bad mental place. And you know what's gonna happen tomorrow? Well, God is this doctor would have told me 20 years and yeah, I, I I have sought mental health. I mean, you have to write to do you see a therapist?

Yeah, yeah. So I knew. I knew after my right amputation. I mean, I just I spun out man, I just I spun out because it was it. It threw me off the cliff. And I got so spawned out of you know, what if what next? You know, right if I'm this way now, what's tomorrow? What was next year gonna bring? Yeah. And I just, it was so bad. My trophy wife said if you keep this up, I'm not living this life. It's not what I signed up for. I was I was always known as a it's all good, man. And rule number one. Rule number two. See rule number one. And I was I was in a dark, dark, really dark valley that I just the moon wasn't even shining in. Your wife didn't have any trouble with your, your health issues. She

Scott Benner 59:17
had trouble with how you were facing them. Correct? Yeah,

Mike 59:21
okay. Correct. Yeah. And even when you're dating, so I was in my I wasn't quite 40 yet when we started dating. And you know, you're diabetic you think you're 40 who's going to want you you and so I met her we kind of the, from the first date we went on, we haven't been separated other than a business trip or something like that. We've never really fought until I won't say we fought recently, really recently is when she said I can't This is not what I signed up for. And this is the funny thing. She has a really close relative who is a nurse who is type one. Who had 911 calls on her dozens of times? And knowing that, and she got with me as a diabetic, I'm thinking, What? But you know, we fell in love and she's like, it doesn't matter. You know, things happen, things are gonna happen. And thank God, I haven't had to have 911 called on me but and then after five or six years later, she asked me why. And I, you know why? Yeah, well, I test my blood sugar's, but I was always higher than lower because I developed really bad hyperglycaemic on awareness. And I was paranoid going low,

Scott Benner 1:00:36
right? Like, you're, you're shining a light on something, but I contend constantly, I don't say it out loud as much as maybe I think it. But everyone who's come into this life, you know, in the in the past handful of years and seeing technology like it exists now. I don't think the vast majority of them will see the issues that you're having. No. And I wonder if they don't want to pretend like they don't exist, so they don't have to think about it. And that I understand. But my responsibility becomes such that as the, as the podcast grew, and it started reaching more and more people. I thought, I'm not just talking to, you know, moms with good insurance, or, you know, you know, kids who grew up well and have DAX coms like any more like I realize now that I'm, I realized that then, but as it grew, I'm reaching more people. And my contention is, is that there are way more people like you living in the world right now with Type One Diabetes, than there are the average parent of a child who's got good insurance and found a podcast. You don't I mean, like, so I don't want to be a boutique show. And I, I mean, I was really grateful that you reached out and want to talk about all this. And I have to admit, when you asked, I didn't know how you were going to do it. I have to admit that personally, for me, it gets less than I don't have any of your health issues, you know, and when this is over, I don't have to do whatever you have to do today. But your name being Mike is hard for me. That's the weirdest thing, but at the same time. Like, I feel like I missed my friend Mike. And I feel like I missed you, too. You know what I mean? So it's a weird thing. It's obviously not it's it's not all of your health is not my responsibility. But it's, um, it's a real, it turns up stuff for me, because when I start thinking about my friend, Mike, I don't believe that by the time Arden was diagnosed, and I figured this the end, by the time I figured this stuff out, it was likely too late for him to begin with. But it would have been cool to see him feel hopeful once or to hear him talk about his five, five, a one C or something like that. And it's just it's, it's tough for me to to hear you describing what's happening to you. Because I feel like I I feel like I can see your future already. And I think you feel like you can see it too.

Mike 1:03:26
I do I know what you're talking about. I've heard you talk about Mike and it, who knows, but I I truly believe in my heart of hearts now that I'm not going to get better per se. But hopefully, I won't get worse. And I will say this. Um, I've always worn glasses to drive at night since I was 18. And since I've been doing your techniques, strategies, not medical advice, I know, but employing how to use insulin, and how to bump a nudge and Pre-Bolus and all those. I no longer wear glasses.

Scott Benner 1:04:14
Oh, that's cool. I wish I could do something to get myself to stop. I'll tell you what, if anybody wants to start a podcast that gets me away from these reading glasses, I'd be really really grateful.

Mike 1:04:25
Well, it's in a talk to my doctor about that and the eye doctor and it's because my eyes aren't you know, shrinking, swelling, shrinking, shrinking, shrinking, shrinking, shrinking. The blood sugar's my my mom wears pretty heavy glasses. My dad, my granddad, nobody else did. So, for what that's worth while

Scott Benner 1:04:45
I'm Thank you. I mean, that's a weird. I'm sorry that I turned this into you making me feel better, but I appreciate knowing that. I was just Charlie give context. Really? Yeah. Yeah. Like I know we're in a weird setup right now where I don't have a camera on it. You do, but I, there are times I've had to look away from you. Because I'm like, Oh my god, I need to be able to keep this moving and, and put a podcast together. We can't both start crying because I don't think anybody would listen to it.

Mike 1:05:15
And the other reason why I was happy to do it, and I knew I was gonna break down, but it's, it's, you know, it's sad, it's it's, it's you look back and you think you know what I used to do and what I warm at now, but you know what? I honestly believe my heart of hearts, how much worse it would have gotten so much faster. The other issues, had I not found the podcast and been able to employ those tools to hopefully stop the future, you know, and carry on where I'm at? And I, I believe that.

I'm glad I do. And it's. And that was? Well, that was part part of it. We'll go ahead.

Scott Benner 1:06:08
I didn't mean to cut you off. I'm sorry. No, I thought it's all you know, I just part of what I was trying to say, and what I've been trying to say about why this all needs to be kind of bulletproof and easy to understand. Because, in my mind, what if the podcast finds you, but it's too convoluted or too difficult? And you're like, yeah, and then you walk away from it. You know, like it needs to be like there was there's a person online last night, who put up some graphs. And people were, you know, pretty much it's interesting to watch people from the podcast talk because they they're like, there's two factions. One of them's right. Okay, this person, this bait, this person's basil is either not strong enough. Or they're bad apologising for their meals, right? It's one of these two things. I saw that but Right, right, but the point is, is that it is definitely going to be one of those two things, but you're talking to a parent of a child is a fairly new diagnosis, they don't know what they're talking about. And yet they're trying to figure it out. And I think that, if I can give myself credit for anything I can give myself credit for, for coming up with the idea, the very simple idea that you first make sure your basil is right, then you learn to Pre-Bolus, then you learn the glycemic load and index of your different foods, and stay flexible. And it's a four step idea. That is doable. And no matter whether you're a person whose basil is too weak, or you don't know how to polish your food, if you go through those four steps, you're going to come out on the other side with an answer that's valuable for yourself. And while these people were talking to this person, I realized that the one difference between all those people who all had rock solid advice and me was that I have a concept of what it's like to talk to a person without having all of their information without really understanding and and knowing that if you go back to get your Basal, right, make sure your Pre-Bolus etc, etc. that no matter what problem, ask what problem perspective you're coming from with using your insulin that will get you to the answer, like maybe this woman's basil is right. For her kid, it could be, but maybe it's not that far off. But understanding that you can't just look and tell somebody something because if somebody were so somebody to swoop in, in that moment on that person in that post and say, Hey, your boluses are way off, which they probably are. But they don't. They don't address the basil first, then these people are going to be making these aggressive boluses forever. And they're going to have these lingering highs. And so I came in, I said, Look, your Bolus looks looks weak to me. People are like no, no, no, look, how stable are blood sugars are these blood sugars are it's just high because they're missing on the meals. And I'm like, well, that could be yet but I know enough to say Well, yeah, maybe where everyone else where everyone else is like no, no, this is it. This is but they only think that's it because it's what happened to them. And and you know, and so understanding how to deliver this information in a way where everybody comes in ends up at the same place if they kind of go through the steps. That's the part. That's super important. Because you miss people, you don't catch them all if you don't have something that everybody can work out. And I don't know, I just think that it means a lot to me that you found the podcast. It struck you and it worked.

Unknown Speaker 1:09:55
Yeah

Mike 1:09:56
and part of it white work. I I understood what you're saying. But you got to remember, I've never changed my own basil rates or adjusted those. Yeah, I've, I've obviously fluctuated my boluses from what I'm eating. And that was always never enough. And then the two or three hours later, you're covering for 250 to 75 300. And that was just a way of life. So I, when, when I first started doing this, I needed somebody there in my corner to agree with what I was seeing, and saying and adjusting. So I hired Jenny from integrated diabetes. As my coach, my mic person in my corner my Yeah, yeah, you're, you're absolutely right. That's the right thing to do. Right. And by having that, that person as my crutch, though, I got it dialed in, you know, you know, we got it dialed in, you know, cuz she was there with me too. But it validated everything that I understood, to make those adjustments. You know, I couldn't do it on my own. But I was terrified, because I didn't again, I'd never made my adjustments. I go see my doctor twice a year, and she'd have my PDM. And you

Scott Benner 1:11:14
go, Okay, well, we should make sure people definitely understand what you're saying. So you listening to the podcast, you're like, Oh, that makes sense. Now, how do I pull the trigger on this like that, then that's a really difficult thing to do. Whether you're a person has been living with diabetes for decades, or a person who's only had it for few weeks, like the the idea that you could move that number, turn that dial, like flip that switch, is, it's freezes people. And I'm telling you, the only my Give me one more second, the only reason I had the nerve to do it was because in the back of my dark mind, I was imagining things that have happened to you happening to my daughter, and I thought we got to do something. Like we can't just look at it, you know, but a lot of people get stuck looking at it.

Mike 1:12:02
Well, you got to remember that I have 27 years of a habit in me of Never making an adjustment to now make this adjustment versus somebody that's a year or two in it. Six months in it. You know, yeah. Okay. You don't have that. Don't touch that. Don't touch that. Don't touch that. Don't touch that. Don't touch that. Don't touch that. Yeah, just looming over you. Um, you know, and I'm not saying we're, we're, you know, sitting in a great place, but you know, I can afford to hire as you know, that help. And I know, she's a big help to the show. And I knew from listening to her in you that that was going to be what I needed. That help, and anybody that needs it. I mean, it's just, it's such a great ability to have that resource. I mean, you're only one man, you know, you've only got so much time in the data. I know, you'll help people and you do all the time. But I didn't need to bog you down at that point. I could afford to. Does that

Scott Benner 1:13:08
make sense? Yeah, well, not only that, but Jenny has something that I don't know how much it comes through. And she's talking on the podcast, but I know Jenny more personally. And the anger. I think that might be the right word that came out of you earlier, when you talked about doctors not helping, like Jenny has that. Like she has that inside, she does a good job of masking it. And it might not come out a lot. But she's driven by the desire, in my opinion, to fart bad information. 100% Yeah,

Mike 1:13:44
I 100% see that and after work with her listening to you, and yeah, 100% and she does a really good job putting the makeup over.

Scott Benner 1:13:54
And she and she really cares about people to which I there's, as soon as I met her, and we started to get to know each other. I just thought like, you know, I joke on that, like, you'll hear me joke on the podcast. I'll say I wanted to have Jenny back on because she agreed with me. But that's just me trying to be funny. I don't know if it works or not. But I guess I like when people agree with me, but that's for a different reason. But what I liked about Jenny was her desire, like I just spoke about. Yeah, I like her knowledge. I like the practicality of how she thinks about it. And I think the first time I said to her, I don't believe that your diabetes may vary. I believe that everybody's diabetes at its core works the same way. And if you had your settings right, knew how to use insulin, it would work out mostly the same for everybody. And she's like, I agree with you. And when she said that, I was like, Yeah, okay, fine, finally, and she validates me. I don't think I don't I don't know that she ever thought about it. I've definitely never said it to her. But her being on the show. Helps me reach more people because there's a validation that that she agrees Yeah, and when she doesn't agree, she just So, and when I don't understand, I just say, I don't understand that, you know, like, it's it. You gotta have no, it's crazy. I'm gonna say this because people will laugh, but you have to have no ego about it. And then once you know, you're right, you have to steadfastly defend the fact that you're right. And because other people will come in and say no, I think the Basal I think it's this. So, you know, the this story online that I told earlier, it's not over yet. It's still happening right now. And this person came back and showed a basil rate overnight that held this, this kid's blood sugar super steady. Like it was great. And everybody's like, Oh, see. And she I think she moved the basil from point five 2.55 or something like that. And everybody's together. Basil is great. And I still was like, well, what's the number? Yeah, and the number was like, 141 3140. I'm like, Okay, so the basil is great. It could still take a little more, like, you could still put a little more maybe point six is the answer. I don't know. I'm not there. But if that basil was right, overnight, your blood sugar would be lower. And maybe you're not comfortable there. Maybe she loves 140. And then God bless. Like, right. But if, but if if not, I mean, Arden's blood sugar last night was like 85 all night. Yeah. So you can say that's not a big of a deal. That's 50 points. 50 points every every minute you're alive. That's 50 points less blood sugar, like sugar, like coursing through your blood?

Mike 1:16:23
Is Yeah, it's that sandblasters just trickling.

Scott Benner 1:16:25
Yeah, it's a big deal. And I'm not saying like, Listen, if your kids blood sugar's 140 for a week, while you're figuring out or honestly for three months, while you're figuring it out. Oh, absolutely. You're gonna be okay. Like, right, but. But what Mike's telling me is it can't be 10 years, it can't be 11 years, it can't be 20 years, it's no, it's not going to be okay.

Mike 1:16:43
No, it's going to happen. You're going to have sick days, sick weeks, six months or six months, you know, that that little time periods is not going to do you know, long term damage. I believe that my heart of hearts because the body does repair damaged cells. But there's a point where it can't repair it anymore,

Scott Benner 1:17:04
right? You're hoping to hang on just to stay steady, stable, where you're at? Yeah. And you've given yourself the best chance possible, honestly. Yeah, absolutely. You're doing an amazing job. Look, man, for people who don't understand what we're talking about. Still, I mean, if you've listened to Mike, and you still don't understand. My friend, Mike, who was diagnosed in the mid to late 80s, passed a couple of years ago. And I would say that his care mimics yours. But he never really until the very last couple years of his life made it to modern insulin. And he was discussing what to eat for dinner, when he stood up and ceased to exist. And that he did not know that was coming.

Mike 1:17:49
No, you don't. And I've, I've heard from my doctor was it was a copy your company a couple years ago. You know, we were making some adjustments or whatever. And

Unknown Speaker 1:18:01
it might have

Mike 1:18:03
I don't it was several years ago. But she goes yeah, you know, right now everybody's dropping their heart attacks. I'm like, right, what 6070 she goes no, 40s and 50s. You know, all these long term type ones. They're dead. We're just, you know, doing their habit doing their thing. So it but and I want to preface right base listening by doing right now, you're gonna avoid that later.

Scott Benner 1:18:28
Yeah, it is very likely not going to be the outcome for most people. 40

Mike 1:18:32
No, five years from now. And I want to stress to these teenagers out there that you think you're invincible. You're not. You know, if you're in college, and you go to the mess hall and you come out of that with a 300 for four or five, six hours and think it's funny. It's not, you're gonna more than likely have problems. And I know the teenage years are tough. I know. They're tough. I know, their early 20s are tough. You think you're that warrior, brave, you're invincible. You can be Take care of yourself. If I can't get any, any across. You got to do that in those years. Because I know a mom and dad's taking care of you. But when you go off to teenage and you want to not be on insulin for a while, because you're tired of being a diabetic, just me. I know what it's like, Been there, done that got the shirt hat sticker, but you just can't do that. And if I can get any message across, you can't do that. do what's right, you're gonna be fine. Anecdotally,

Scott Benner 1:19:35
I've spoken to enough people now. Where I have to agree with what you're saying. Because, you know, you're diagnosed when you're younger. And if you're lucky, you have parents who are on top of it, right? If you're not lucky, I've talked to every I think I feel like I've talked to almost every version of a person who's out there, right? And by the way, every time I say that someone sends me an email and I was like, I bet you haven't heard this story before. Like all I have But, you know, say say you're diagnosed when you're young, and you're and you get me, and I'm your dad. And so you're okay. And then you get the college, and you let it go. And a night turns into and these aren't my this isn't me making it up. These are the stories people tell on the podcast and it turns into a week week turns into a year, your turns into grad school. The next thing you know, you're 27 years old, and some girl are guys telling ya, listen, I mean, I want to have kids one day, are you sure you can do that? And then you go, Oh, no, no, no, jeez, you're right. And then you'll whip it back into shape. And these are the stories people tell. But in that time you lose 1819 2021 2223 24. I don't know what your blood sugar's were during there, you don't know either. And as much as it sucks, you don't know what's going to happen. And what's going to happen from that isn't going to happen until you're in your 40s maybe, you know, and, and if something doesn't luckily snap you back into it, which is what I hear from most people, it's usually it's usually not. It's not usually like a come to Jesus moment. Like you just realized though, I should take better care of myself, it ends up being for other people. I hear a lot of women say I wanted to get pregnant. So I got my blood sugar together, or I got pregnant, I didn't realize I was gonna get pregnant. And I had to pull my blood sugar together, or I met a guy. And I realized I wanted to have a life where I met a woman I realized I want to have a life or vice versa, or whatever, whoever meets whoever. The point is, it seems to be the trigger seems to be when you suddenly care about somebody else. You realize how much you weren't concerned about yourself? Yeah. And then suddenly that love or that connection? Makes you feel like you want to do better for yourself? Almost for other people. Yeah, but if 50 people haven't said that, to me in the last three years, I'm lying. Like, you know what I mean? Like it's been that many.

Mike 1:21:57
But circle back to the pregnancy thing. When when they die big ones get pregnant, the doctors make them get their ABCs below six. And then once they had the baby, they go back to wherever they were like, why did you do that? Oh, it's just so exhausting. But I gotta honestly tell you, I've recently taken on a new primary doctor because of my insurance who is a type one? And when they look at your, you're able to see five, five, that's too low.

Why is it too low? Well, that, you know, I told him, I'm doing a juice box. Well, that's just stressful. Why is it stressful?

Well, aren't you? Are you being stressed? I'm like, honestly, Scott, I think so much less about diabetes every day than I did before I started doing the math because you'd eat lunch. Two hours, three hours, like two senators gas said about that. Yeah. So now you're fighting that and trying to get that down to what you know, should be a good number. Yeah, um, but my high alarm is that 120. And I told the doctor that because you need to raise that. Like, why? Because it's too stressful. I go, why is it stressful? I'm Pre-Bolus saying, Look at my graph, if I'm off a little bit, because you know, stress, happiness, sadness, a car pulled out in front of you, adrenaline, all those things happen everyday in life. So that same turkey sandwich is going to be a little different day to day because of those factors. If I hit 120, and Dexcom, if you're listening, I love you. But please put a Delta in there. So I got to go to sugar mate at 120. Look at the Delta, if it's plus four, I'll give a couple of tenths a unit. If it's 120 plus zero, a watch it and it usually goes right back down.

Scott Benner 1:23:42
Jake's coming on next week from Dexcom. And he's gonna beg him to put it down. I think he's gonna tell me what the what the new apps look like. So I'm hoping that that's something If not, I'll just I'll have to bring it up again. But please do yeah, no shelter they have to have to rely on for anybody listening to us understand Mike's talking about rate of change. Like he wants to know, if his blood sugar's like not just the arrow, like diagnol up, he really wants to know it changed. You know, four points in the last time since the last reading or something like that. Yeah, affirmation.

Mike 1:24:13
I look at that religion, it could be 120 minus three, I'm definitely not gonna do nothing. But even if Dexcom says it's a straight arrow, it's a good reference. Yeah. But I want to see that delta to know, do I need to be aggressive? Like, instead of two tenths, four tenths of a unit?

Scott Benner 1:24:30
No, I completely agree that it's incredibly important. If I was making an app, they would have it on there. Don't go high. You won't go low. Maybe we'll maybe there'll be a Juicebox Podcast app one day, you can just imagine. I started a three app game. That's branching out. Is it? Well, I mean, I do want to ask if there's anything else you want to talk about before we we start to wrap up. I don't want to leave you without Having said the things you want to say, but

Mike 1:25:03
Well, I'd said pretty much everything I want to say, um, if you know if anybody wants to talk, I'm open. I'm in the in the Facebook group. I'm, I'm an open book, I don't hide any, from anybody, anything from anybody I talk about I see a therapist. I'm not mentally and you know, people think you're seeing a therapist, you're meant to say, No, I needed help to try to figure this out. I didn't have the tools. So it's not shameful. And I, I talk about that to anybody, because maybe I've had a couple of my friends say, Hey, I really appreciate you talking about that, you know, what, I need to see somebody because of this, that the other. And so I talked about it, and they see that what normal is normal, you know, they can equate to that. So I, I'm a big advocate of that. re educate, re education, to keep up with the times the new technologies. I heard you talk about,

Unknown Speaker 1:26:03
excuse me,

Mike 1:26:05
why you don't write a book, why you don't write a book, quick notes. because things are fluid, things change, the technology changes, you need to re educate yourself with what's new. Don't rely on your doctor. You know, do your research, you know, you know, look at these drug companies go online, on forum on the Facebook group, and you know, what's new? What's the newest and latest and greatest? I got a buddy in Arizona, who I've recently met, you'll, he's I'm not gonna say his name just for his privacy, but because I don't know if he'd want me to talk about him. But he's on regular and mph. MDI is like there's way better insolence. Really. I mean, he just didn't know because he had it. He didn't know who to talk to reach out. He and I connected to another friend. We text every day. And, you know, he's gonna, he's doing better. I'm so proud of him. So you, Tucson chef, you hear me saying this man. My heart goes out to you. I'm so proud of how how hard you work and you're getting Sorry, man. I didn't think I was gonna break down for that one. It just fills my heart with joy, that he's getting the help he needs and he's finding these tools. Which It's so sad because so many people are just diagnosed from the doctor that graduated 1986 and that's the technology they know. Get a new doctor asked what's the latest from you new doctor don't take their word that this old insulin is great. Just go to Walmart do that. $25 vital insulin. You know, just re educate, re educate, re educated. I just I can't hammer that enough. And after finding the podcast. As I said, I didn't realize I didn't know how insulin worked. Nobody ever taught me. I never asked anybody because my doctor got it. So why would you ask him without the reeducation? And these better ensigns we have I just I can't push that enough. And

Scott Benner 1:28:09
you don't want to be the lobster in the pot, man. All right, it's fine. Everything's good. This feels nice, actually. Yeah. Nice. I like not worried about it. And and yeah, it just I mean, the way I usually say it on the podcast, right is you don't want to look back one day and see that you're doing something the way people used to do it.

Mike 1:28:28
No, no. And part of my therapy. My therapist, I just want to put this out there. I was so focused on yesterday, what happened 20 years ago, and so worried about what's going to happen in 10 years. The best thing that broke through to me, and I think anybody can relate to this is you got to be in the now you got to be in the present. Throw away yesterday, focus on today and have some concern about tomorrow. But tomorrow that's when you'd be the president present president president president and by to help you set yourself up and here's the easiest tool that anybody can us wake up in the morning, get your coffee and focus just on three things you're grateful for that day. And like and what I do for instance, you know, I teach barbecue and I got a barbecue store. I work with a volunteer there I work for product which I was unaware of this. But when I my first dog I had to retire because of this had to have his kidney removed. And she knew I didn't have the dog there to look out for me. She looked out for me we were at one barbecue competition one time and I was overheating so I pop slept in the motor or you know kind of, you know what in the motorhome I took a shower, and I came out and she says where'd you go? I go What do you mean she goes, you need to tell me if you're going to be out of sight. I got I'm watching you. So one of my days of being grateful I thought about that. So I physically call that person, there's something I do. And I explained about my three things. I'm gratitude, Greg grateful for that day. And if it's a particular person, a friend, you know, I want them to know that I'm thinking about them that day, and focus on three things. So since I've been doing that, and that buddy of mine in in Tucson, he and I will text our three for the day just to kind of, you know, see how we're doing and checking in. And there's several days that I've been practicing this, what am I grateful today I'm in the present, there's some days, I can't think of three, I just feel such gratitude. That it's just, I can't focus on three. And that has helped me huge and that I got directly from my therapist, to as an easy tool to work on. It is so effective, B. And now, don't worry about 20 years from now, because the asteroid could hit tomorrow and we get I'll be gone.

Unknown Speaker 1:31:07
Yeah, worry is a waste of imagination. That's for sure.

Mike 1:31:10
It is. But I got so spun up in that I couldn't, I couldn't pull myself out.

Scott Benner 1:31:15
Yeah, no, I understand happens. The people. I don't generally worry a lot. But two days ago, I woke up and I was I just literally worried about the thing I went to sleep worried about. So it felt like it just started over again. Yeah, I have to say that. Being positive for other people to it is really valuable, like not just seeing, like I talked about when I was talking to the doctor the other day, which I heard you referenced earlier. But I think you you if you're having success, and you want to show your work, that's really great, because someone is going to see it and feel hopeful about it. I think it's really important to remember that as we share online, the people you're intersecting with who you can physically see commenting or liking, there are a very small portion of the people who are seeing it. And, and you know, as you're, I mean, listen, if you're if you're in a, if you're in a room with four people, and you're talking, you're impacting four people. But I can tell you, from my personal experience, I don't even at this point, know how many people I'm talking to, I just have to imagine that they're there. And, and I've now heard from so many different people in so many different walks of life, I understand that they're there. I know they're there, whether I can see them or not. And being positive. Not falsely, but but in a tangible way, is very valuable for people. And I'm glad to see that. I'm not hearing from so many people anymore, that you don't show people when you're doing well, because it makes them feel badly. I think I think that they'd much rather know that better exists. And even get the idea that reaching for it might be valuable, rather than just to make them feel like this is horrible. And this is what it's always going to be and look, everybody else agrees with me. So I'm just gonna sit here in this pot and boil. That's all. I don't know why you made me think of a lobster today.

Mike 1:33:19
That Well, that's like, that's a great analogy. It's like putting the frog in cold water and turn it on. And he doesn't feel the difference. He

Scott Benner 1:33:25
doesn't know. This is like, tapping, but I don't know it. Yeah, you don't you just you got to try. He just I mean, the point really is, is that you have a finite amount of time. And even if it all goes perfectly, it's not enough time. So when things start, you know, creeping up, and I think everyone's going to have roadblocks. I think a lot of them are going to be health, even if you don't have type one. And you know, sometimes you only get stretches the time stretches a time where you don't have to think about something. But if you don't pay attention to what you're doing, and try to address it, those stretches are going to get shorter and shorter and shorter, and they're going to disappear one day.

Mike 1:34:03
Yeah, I think you reference roadblock and um, you look at some of these, like military leaders or these lieutenants and stuff and in the way they look at things and right there's a roadblock. What's the solution? Don't focus on the roadblock. You sit there and keep looking at the roadblock? That's how you're going to stare at Yeah, you get caught? What's the solution? What ever it is, whether it's diabetes, whether it's whatever it is, but that's a that's a that's a real valuable message I've got out of you know, some of these discussions and talks. It's like, don't just and you get these negative nouns that keep focused on what happened. That's like being in yesterday. Why didn't somebody tell me to do better 20 years from now, but that that's gone? What's the solution? Now

Scott Benner 1:34:47
you got today and forward and that's it. So yeah, yeah, right. Mike, I really appreciate this. I can't thank you enough. I, I imagined that it wasn't going to be easy for you, and I appreciate what it must have taken to tell everybody. All this stuff. Yeah,

Mike 1:35:05
I know it's gonna be hard. Like I said, I'm, I'm reachable, I'm not I don't know what I can do for anybody. But if somebody is in a dark place or having the same issues or worried about it, you know, I don't know what I can do for money. I'm not Superman. I'm just a normal guy. But I understand sometimes you need to be able to associate that or talk with that, or, you know, I'm saying, Yeah, I'm

Scott Benner 1:35:30
saying find somebody who's in a similar situation as you and see if they know how to get out of the hole. Yeah, I have to tell you that I thought early on when you were describing, I was so tickled I knew how serious everything was going to be today. So I didn't make this joke at the time, but it stuck with me through an hour and a half. The image of you walking through a hospital, just on death's door as a child and this doctor kind of like sachet and pasty and be like, that kid has type one diabetes. I pictured john travolta in Saturday Night Fever. I don't

like swinging his hips with like his like fancy white suit. And he was just like, Hey, kids. Oh, handover. Yeah, he just kind of like made like finger guns at you and was like, type one diabetes. And how proud he must have been of himself later. Like, you know, there was like a moment where he was like, I knew that kid had diabetes. Yeah. Oh, yeah. Yeah. Didn't think he said that. I just had that. That poster image of the movie poster might show my age. But you said that and that's exactly i got i had a guy strutting down a hallway in my head. And he was like, That kid's got the rickets, that kid's got type one, I can just tell

Mike 1:36:42
it. Can I say one of the things from a reference from please the podcast with a doctor when you were asking her? What's the answer? And she said, 42. And you said, No, no, we're not going there. That was a reference from The Hitchhiker's Guide to the universe. Oh,

Scott Benner 1:36:58
no kidding. I don't know that one.

Mike 1:37:00
You've got to watch that movie. Because as soon as she said that, I say, Oh, that was a what a timely reference.

Scott Benner 1:37:07
I wish I would have known that I I You see, my level of understanding is just 37 from clerks, which is not appropriate for here. But does turn out to be like I said to her, when you ask people for a random number between one and 100, more frequently than not people will say 37 for some reason. Yeah. So yeah. Anyway. All right, Mike, I really appreciate you doing this. I am going to I'm going to think about this a lot. And I hope everybody else does, too.

Mike 1:37:40
Yeah. Thanks for having me on. I'm I'm like I said, I'm happy to spread the story that for people now. do your due diligence. It's not doom and gloom. Yeah.

Scott Benner 1:37:51
Well, I'll tell you what, when this goes up, I will put a post on the private Facebook group, that talk that announces this episode, and I will tag you in it so people can find you.

Mike 1:38:02
Sure. All right. You got to do the john travolta the Saturday Night Live. movie poster is the pitcher.

Scott Benner 1:38:08
Oh, for the episode I have. Yeah. All right. Damn it. I will. Alright, man, thanks so much. Hold on. Was that Thank you, I really appreciate you and all you doing. And thank you, man. It really is my pleasure. I mean, stuff like this makes this not that it's hard to do to begin with. But if it was, this makes it much easier. He you said something earlier, that, um, you know, I don't think I'll ever forget. And I know I've said it a number of times. But when somebody who has type one references that I don't have it. But in a positive way. Like I can't believe somebody who doesn't have type one was able to talk to me about this. I mean, I'm very touched by that. It's a the only world where I have it, it means a lot to me, but that I don't come off as as false, you know, so. So thank you very much. Thank you, Scott. I want to personally thank Mike for coming on the show and sharing all of this with us today. And thank you for listening. I also need to thank touched by type one for their sponsorship of the Juicebox Podcast to remind you to go to touched by type one.org. I'd also like to remind you about the Omni pod promise and say that you may be eligible for a free 30 day trial of the Omni pod dash right now. Go to Omni pod.com forward slash juicebox to find out more. If this is your first afterdark episode, you should go look for the rest of them. Childhood divorce living with bipolar sexual assault and PTSD using psychedelics. Amy, heroin addiction Believe me and depression, divorce and co parents thing, sex from a female perspective sex from a male perspective when you have type one diabetes, depression and self harm, trauma and addiction, smoking, weed, and drinking. Those are the ones we have so far. If you think you can add to the afterdark episodes reach out. Besides all of the great episodes of the podcast, there are other series, those about using algorithm based pumping the defining diabetes episodes. The affer mentioned after dark and so much more. Take a look at Juicebox Podcast calm Oh and don't forget the how we eat series intermittent fasting flexitarian keto fodmap Bernstein, low carb gluten free plant based carnivore vegan so many to choose from find out how other people eat. Thanks so much for listening to the podcast. If you're enjoying the show, please feel free to leave a five star rating and a great review wherever you listen. I'll be back soon with another episode.

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#530 Diabetes Variables: Leaky Sites/Tunneling

Diabetes Variables: Leaky Sites/Tunneling

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Friends Hello, and welcome to Episode 530 of the Juicebox Podcast.

Jenny and I are going to talk about another diabetes variable today. And today's topic is called tunneling. But you may think of it as a leaky site. So I'm still deciding at the last minute what to call the episode. But once you get in here, you know, then you'll see the whole thing. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you want to hire Jenny Smith, she works at integrated diabetes.com Check her out. And while I'm talking about stuff, let me remind you that I really appreciate when you share the show with other people. That's it, the show is growing incredibly fast. It is getting silly, silly amounts of downloads. And that is because of you. And I want to say thank you. So thank you very much for listening, for subscribing, and for sharing.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. In fact, the most accurate and easy to use blood glucose meter that I have ever used. Contour Next one.com forward slash Juicebox. Podcast is also sponsored today. By Dexcom, makers of the Dexcom g six continuous glucose monitor, you can find out more or get started today@dexcom.com forward slash juice box.

Jennifer Smith, CDE 2:05
Is the sound better? By the way? I guess you probably wouldn't be able to tell until you listened. But I I got a really long cord.

Scott Benner 2:14
Okay, and you're back in the other

Jennifer Smith, CDE 2:16
100 foot cord. And it's like out of my office down through our house down into the basement where the thing is. And so I'm back in my office small space. Right. So hopefully it won't echo is my show sound nice.

Scott Benner 2:33
Thank you. That was very nice. I would record you didn't have to buy Oh,

Unknown Speaker 2:36
god it was 20 bucks. Okay. All right. Deal. So yes, no, that's very nice. You're very kind to do that.

Scott Benner 2:44
Okay, so you brought up a topic, you sent me a note and you're like, you know, we should talk about tunneling. And I have to admit, I thought to myself, tunneling sounds like with those characters on Hogan's Heroes we're doing all the time when I was a little kid watching that show. And then I thought, well, Jenny knows I wrote it right on the list. And no lie. Four days later, I get a note, like an email, like something someone had to like, sit down and compose from a woman who said, Hey, could you and Jenny talk about tunneling? I thought, get out of here. Like, it's

Jennifer Smith, CDE 3:19
really funny. What works isn't like quite

Scott Benner 3:22
a coincidence. That's fine. So I don't know what it is. I'm just gonna be honest and say it.

Unknown Speaker 3:28
Really? Yeah. I

Scott Benner 3:29
mean, I, when you said the word, I started imagining what I think it is. I'm probably not far off. But I had never heard the phrase.

Jennifer Smith, CDE 3:38
So yeah, I mean, you're, you're probably not far off. I mean, you're a smart guy. So I'm quite sure that you can probably guess honestly, but it's most common with straight inserted Teflon infusions that's most common. It's really when the insulin that goes in through that infusion set or through the canula. And it's supposed to be get kind of dispersed under the sub q tissue absorbed, blah, blah, blah. It doesn't it sort of pools at that infusion site, and then because of that, it leaks back up. If you imagine the sides of the canula, right, it leaks back up the sides and it leaks out the top, so you're essentially losing insulin. So the most common are kind of the straight in infusion sets, especially the ones that are not very long, the shorter as well as it happens in larger doses. Typically, you're not going to see it in a dose that's like a unit. But if you've got pretty hefty donut boluses donuts, maybe I'm hungry. I don't know I ate breakfast this morning. If you've got pretty hefty boluses eight units, plus, you could potentially see more of That tunneling happening tends to be reduced in sets that are more the angled sets. Or especially for those who use the 90 degree set, if you can choose the steel canula, that goes straight in kind of like a foam tack, it doesn't tend to be as common to happen with that.

Scott Benner 5:22
So where would we see that? So I know on the pod goes in on an angle. And that's not the case. And I do know that people use like 90 degree sets that are plastic, and I've heard people say, Oh, if that one doesn't work, if the if the plastic handle doesn't work, try to steal one. Yep. Right. And well, so what you're making me feel like is, I don't know, has anyone ever, like, taken the garden hose and like, jammed it down into the mud, and then hold it there for a second, and then the water starts pouring back up like that. That's it. That's what's happening.

Jennifer Smith, CDE 5:53
That's exactly right. Yes. And, you know, it does also happen in more common, I guess, lifestyle types of activities that can be prone to like pulling, or yanking on the site, things like golfing, things like tennis, where you've got those swift movements, especially with tube pumps, that you can get that because anytime there is a yank on that tube, it Yanks the infusion set sitting under the skin. And another reason for tunneling is inflammation of that tissue underneath the skin. So as it gets inflamed, anything that gets inflamed gets puffy or swollen, right? And that creates more space. You would think if it gets swollen, it would create less space like it would squeeze the canula. It doesn't it actually creates more space expands. Yeah, right, it expands. And so the tube itself, the canula has more space to move, and insulin can leak that way as well. So

Scott Benner 6:58
we are counting on on some level. Anytime you put in an infusion set you're counting on so tenuous. Now that I'm thinking about it, you're counting on your body just sort of healing around that tube just a little bit to create a seal. Correct. And you start and so if you have a tube pump, the tubing gets pulled, that seal gets broken, if you're twisting or turning, it could get broken. And then you get what I would just call leaking. I didn't realize people called it tunneling, but like the site leaks is how I Right, right. Yeah, but that's specifically what's happening.

Jennifer Smith, CDE 7:31
It is exactly and you can tell, honestly, I mean Omnipod you can often tell because they do because there's insulin that kind of leaks around that edge. Or oftentimes you'll see liquid in that viewing window area. I mean, there should be some degree of condensation over the wear of a pod, not from me,

Scott Benner 7:53
do you know why? What do you do? What's your magic. So after I pop the little plastic, like safety tab off the Omni pod, we take a clean tissue and twist it like and we we dab the liquid

now people listening just heard of very weird diabetes like nerd that moment. Because if I take the liquid out that I can trust, if I see liquid in the window, that sounds coming from the site,

Jennifer Smith, CDE 8:27
right? Because you can usually tell liquid versus again, condensation, I mean a really hot sticky day or if you're sitting in a sauna or something like that, you may get some visible like clouding condensation in that viewing window. But it shouldn't be liquid to the degree that you can physically like see it almost if you've ever had like a bloody sight, you can see the blood sort of pooling in that area. It's the same thing with tunneling of insulin. And on the pods, I've, I've noticed more than with tube pod to tube pumps, that that adhesive that's right around that curved area. If you've got a leaking problem, it's going to be wet there too. Let's face it, it's Yeah. Um, so I mean, some ways around it are for those who are more active or have more movement to their day, or just kids who are just more prone to pulling on a tube pump, potentially. I mean, there are some tricks things like using the product called iv 3000. It's like a really thin, clear sort of bandaid, almost hypoallergenic, you put it down on the skin, you essentially put the site over that and let the canula go in and through. And then you put another one on top of it almost sandwiching the infusion site, so that what happens is you minimize like the movement, okay,

Scott Benner 9:50
so like there's no tectonic shift, sort of like that. That's correct.

Jennifer Smith, CDE 9:55
Yeah, the other one is and this is actually with and maybe Part of the reason that it's better with steel camulos is that the steel Canyon has a site. And then it has a short amount of tubing that connects to another, not a site, but almost like another little adhesive area. So you've got the site tubing, a site that holds that secure, and then the tubing that goes on from there. So another recommendation with non steel cannulas is to just take about a two to three inch section after the canula and adhere it to the skin using some type of you know skin.

Scott Benner 10:40
Okay, so if you're if you're using tubing, you go a couple inches away from your site and here the tubing to your skin. And that way pulling on the tubing pulls on the fixed site, not on the

Jennifer Smith, CDE 10:50
not so much on the actual infused area.

Scott Benner 10:53
Yes. Is this more common in certain body styles or types or older or newer sites or anything like that.

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Jennifer Smith, CDE 15:06
Definitely, I mean, you bring up a good thing about, you know, just the rotation of sites, obviously, because if that is going to be a reason for tunneling, older sites, sites that have more scar tissue, again, scar tissue is going to be less mobile or less, you know, flexible, I guess is the better word. So you're going to have the tissue that's hard, and has more ability for that canula to kind of have wiggle room.

Scott Benner 15:34
Alright. But not like I'm thinner, I'm heavier, I'm older, I'm young, none of that stuff happens.

Jennifer Smith, CDE 15:40
That doesn't seem to be it's much more the insulin amount, and then the movement itself of that particular person's lifestyle.

Scott Benner 15:50
So if I just sit perfectly still, I'll be okay. And don't eat a lot of food don't eat the Bolus. So you're saying if I could just basically get rid of diabetes, and this tunneling thing wouldn't be much of an issue at all.

Jennifer Smith, CDE 16:02
Right? I mean, in terms of in terms of the insulin doses themselves, knowing that we obviously have to use insulin. Sometimes using the fancy features on a pump can be more beneficial to dispersing insulin slower. So using things like an extended Bolus with a portion of a large Bolus, now a portion extended out a little bit more slowly. I know some of the insulin pumps. I know tandem does it. I can't remember I don't think that Medtronic allows you to change but tandem allows you to change the rate at which your insulin gets dripped and on boluses. And so slowing that process down even in a small amount can sometimes help that Bolus get absorbed. I've

Scott Benner 16:51
often used a 30 minute extended Bolus to bridge a gap like while Arden's leaving a class going to lunch like if like if her blood sugar 78. And I still want to Pre-Bolus but I'm like, Well, I don't know how we're gonna do this. Like I can't put it as much as I want, because she's going to be low before she eats, right? I would do like a 0%, upfront, and all over 3030 minutes. So you kind of get it in on time ish. But it's not all in there that seems like that might help that, hey, this is making me wonder do people with higher basil rates, Basil? How do I just miss pronounce basil to people with higher basil rates? Go through this more often. Do you think

Jennifer Smith, CDE 17:33
like we would expect? So I mean, I would say yes. In general terms, yes, mainly, because if you've got a higher basil rate to begin with, you also have much larger boluses. I mean, think about a Basal rate that's like 1.75, you're not going to have an insulin to carb ratio of one to 30. And if you do there, something's not set. Something's wrong. start over again. But you would expect that with larger basil, overall, your sensitivity to insulin is lower. So you're going to need larger Bolus as well. So another thing that kind of goes along with decreased chance of tunneling, especially with larger insulin dose, is making sure that you're changing the site more frequently, okay, you might need to change the sight, despite your pump holding 300 units of insulin, you might need to change it once you get to two full days, and nothing beyond that, regardless of the amount of insulin, you know, in that large amount, you might make it to two days. And that might be it.

Scott Benner 18:33
Could you cheat a little and split your Bolus, and inject some of it, if this was an issue,

Jennifer Smith, CDE 18:38
you're kind of getting into all the realm of what I do in pregnancy with women who've got really high resistance before they get pregnant. And we know that their insulin needs are going to be just exorbitant by that third trimester, we pull a lot of tricks out of a hat, I mean, we sometimes cover 50 or 60% of the basil with a basil injected insulin and take the basil that's pumped in way down, then we may even use you 200 insulin, which gives you two units of action per one unit of an actual dose volume. So then instead of a Basal of two, you get down to a Basal of one, but you're getting the impact of a Basal of two. What is that called?

Scott Benner 19:19
I can't think of the word all of a sudden when people only Bolus with their pumps, but they use an injected Basal insulin. They call it something

Jennifer Smith, CDE 19:28
really, I don't know the name for that. But it's

Scott Benner 19:30
right out of my How could two people who twist up a tissue and dad out the couple of drops of insulin on the pod not be able to remember that word?

Jennifer Smith, CDE 19:39
I don't know what that's called.

Scott Benner 19:40
I'm never gonna figure it out sitting here, that's for sure. But But people have a name for it.

Jennifer Smith, CDE 19:45
They do and even at smaller doses, some people find that for whatever reason, a Bolus with an injection works a lot better they get more very precise. Like dosing action. Yeah. And impact of action by just Taking a Bolus versus they love the precision of the basil coming from their pump. Okay, so I mean, there are lots of ways to attack things. Definitely. I've got someone in college right now that I work with and she knows that any Bolus that she needs to take over seven units, she will have tunnelling, if she doesn't Bolus with an injection,

Scott Benner 20:21
okay, would change into an omni pod for her make a difference? She's on Omnipod. It's still happening to her even with the FC that so some people it's funny because you hear people sometimes say, oh, if you're having trouble with that with the, the Omni pod can yell at go to a pump with a 90 degree candle. And I've heard people say, Oh, if this 90 degree candle is not working for you, you should try the army. Right? Exactly. Right. You shouldn't just sit around struggling with something that doesn't work for you.

Jennifer Smith, CDE 20:48
No, you shouldn't. And that's a that is one benefit, I think to tube pumps is that if you think it's one canula that you're using, there are multiple to choose to try. Call the company and let them know hey, I think that this set this type of set is a problem. Do you have some I'd like to try this one. This one, they'll usually send you a couple of samples to try before you order a whole big box.

Scott Benner 21:11
years ago, I interviewed Todd Hobbs, who I think at the time was the CEO of Novo Nordisk, but I don't, I don't believe he is anymore. And in his talking about what he thought people with type one diabetes needed, he was adamant that what they needed was better canula technology. Oh, yeah, that at the top of his list, you know,

Jennifer Smith, CDE 21:32
well, and there, I'm sure that you've seen, the study is about the candle that has, it's almost like a sprinkler effect, right? It's a candle, that's a tube that's got multiple holes through the tubing rather than just coming out the end. And what they find is that with more more surface area that they're covering with like a spray of insulin, rather than an injection, at one point, you get a lot better absorption, you get more precise and even absorption. And tunneling almost disappears.

Scott Benner 22:04
I wonder how hard that is then to inject the cannula because now maybe some of the rigidness of it is gone? Because you've got little holes in the side. Right? Good question. Yeah. All right. What made you want to do this? Like why you were very like, like, we talk frequently, but not that frequently. And you were like, Hey, we're doing this.

Jennifer Smith, CDE 22:26
Yeah, because I think in and I, you know, I texted you about it as like one of the variables, because we've got so many variables to talk about. And I think a lot of people call it leaking. Right? Without, and I think it helps to understand what's actually happening. And some of the reasons and the frequency if you're one person versus another, you know, one kid who's like, a swimmer maybe has no issues ever with tunneling, and they're the same body size and type of their, their little buddy next door, who is an avid golfer? Well, there might be the issue to consider, you know. So I think I think I thought it was important, because I don't see a lot of people but I see enough people that have had this issue. And just think that they've done something wrong, or their doctor isn't offering any solution. I don't know it's a leaky site, change it?

Unknown Speaker 23:21
Well, yes. But

Scott Benner 23:22
it'd be nice if I understood this a little better. It's funny, because he's, you said that, I thought, well, I'm gonna have to call the I'm gonna have to call the episode leaky site so that people even understand like, how to go, like, figure out what it is right. But that's great. I'm glad you did this.

Jennifer Smith, CDE 23:39
Awesome. Yay.

Scott Benner 23:47
Jenny and I are starting to get quite a little list of diabetes variables, episodes. You can find them right there in your podcast player. There's a lot more just search Juicebox Podcast, diabetes variables, or search diabetes variables at Juicebox. Podcast calm. When I get a couple more together, I'm going to build a list. But Ilana put it on the website. Not quite yet, though. Come come into it. All things in time, my friends. Are you looking for Jenny? She's an integrated diabetes.com. Oh, and let me thank the advertisers. Thank you Dexcom, makers of the G six continuous glucose monitor. And of course, the Contour Next One blood glucose meter.

Why I almost forgot the links. I think they pay me to say the links dexcom.com forward slash juicebox. Contour Next one.com forward slash juice box. Check out that amazing Dexcom g six, and the most accurate meter I've ever held. The Contour Next One. Thank you so much for listening. Thank you for sharing the show. Thank you for downloading it your podcast app. Oh, Thank you for subscribing in your podcast app. Thank you. Thank you. Thank you. Thank you. Thank you for making the Juicebox Podcast what it is, I really appreciate it every time you listen every time you share, every time, everything. If you're really looking for some help with all this stuff, you should check out the private Facebook group for the podcast. It's called Juicebox Podcast, type one diabetes, and there are over 14,000 members. I do my best to look in on it every day. And so should you it's an incredibly helpful Facebook group. I know that sounds kind of weird, like people like Facebook doesn't Facebook suck. Maybe it does, but not this group Juicebox Podcast, type one diabetes, go find your brethren. They're very, very kind, very helpful and excited to say hello to you.

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#529 Gail Force

Gail has type 1 diabetes and a number of other autoimmune issues.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

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