Scott Benner 3/7/24 Scott Benner 3/7/24

#1146 Cold Wind: Healthcare Whistleblower E.R. Tech/Nurse

"Mimi" has been an E.R. tech and an E.R. nurse. Her voice and name have been changed to protect her identity.

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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 1146 of the Juicebox Podcast

we're calling today's guest Mimi, she's 27 years old was diagnosed with type one diabetes in 2001. And she's been a nurse for about a year before that Mimi was an ER tech for eight years, and this is what she experienced at her job. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juicebox Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. I'm talking about T one D exchange again and I hope you head over to complete the survey T one D exchange.org/juicebox. Looking for US residents who have type one diabetes or are the caregiver of someone with type one. They're especially looking for you if you are a male, a male of color, or the caregiver of someone who is T one D exchange.org/juicebox podcast. US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box or call 888721514 Use the link or the number get your free benefits check it get started today with us med this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com forward slash juicebox Hello and welcome to the cold wind series from the Juicebox Podcast. These episodes will feature physicians, nurses and other professionals who agreed to come on the show anonymously to share what they see in the healthcare profession. I've altered the voices of each guest so that they can remain anonymous and feel comfortable telling us what really goes on at their job. Just listen to how well the voice alternative works.

Beth 2:35
My name is Beth and my oldest child has type one diabetes diagnosed in October 2020. My name is Beth and my oldest child has type one diabetes diagnosed in October 2020.

Scott Benner 2:47
If you work in health care and have a chilling story to tell about your experiences in the healthcare field, contact me today. I'll get you right on the show. Your story does not need to be specific to diabetes. Mi Mi tell me what you do for a living.

'Mimi' 3:05
I am an ER nurse.

Scott Benner 3:07
And do you have type one diabetes?

'Mimi' 3:10
I do. I was diagnosed February 28 2001.

Scott Benner 3:15
Oh, that's a while ago. Okay. Yeah. You knew the exact date February 28. Oh,

'Mimi' 3:21
we celebrate it?

Scott Benner 3:22
Do you do the thing where you have like a diversionary party?

'Mimi' 3:26
Ah, no. So much a party it kind of it's just like eating absolutely anything I want all day. That's how it started. And then as I got older, I'm like, Wow, it's really not fun feeling like crap all day. So now it's really just like, I'm gonna have a little treat here and a little treat there and call it a day. Celebrate yourself.

Scott Benner 3:47
So you've had type one for over 20 years. Yeah, for most of my life. I was gonna say how old are you now?

'Mimi' 3:54
27.

Scott Benner 3:55
Okay, how long have you been a nurse?

'Mimi' 3:59
I've actually only been a nurse for a year, almost exactly a year. But before I was a nurse, I was an ER tech. And I did that for just under eight years. What does an ER tech do? So it depends on your hospital and state. But where I was working, I basically did what nurses do, except I wasn't doing assessments and giving medications. So I was starting IVs I could put in catheters EKGs casting and splinting CPR when necessary, but lots of like task oriented stuff.

Scott Benner 4:35
Okay. How long does it take to become an ER tech?

'Mimi' 4:37
So similarly, it's dependent on your hospital and your state, but I just had my CNA, my nursing assistant license, and then everything else that I was able to do, I was taught on the job.

Scott Benner 4:49
Okay, so you went right into like a, what happens after high school you get like an associate's degree.

'Mimi' 4:55
So for CNA, it's just a certificate. So some programs are like weeks summer 12. I think mine was an eight week program. I actually started working at like an assisted living facility as a resident aide. And they were like, Oh, if you go get your CNA, we'll pay you more. And I was like, okay, like, why not? It's not expensive to get. And then once I got my CNA, my best friend's mom, who was a charge nurse at our local er was like, Oh, now that you have your CNA, you can come work for us. And like, we'll teach you all these things. And it'll be really great if you want to go to nursing school in the future. So that's what I did. I it was like, probably six months after I graduated high school, because I wasn't really sure what I wanted to do. I knew I wanted to do something with medicine, but like, I had no idea because there's so many different ways you can go, right?

Scott Benner 5:43
I guess the assisted living place was thrilled, they suggested that CNA and then they lost. So

'Mimi' 5:51
get your certificate, and we'll pay you more. And then I was like, Oh, I'm actually going to leave now. But thanks for the suggestion.

Scott Benner 5:58
They should have said, but you have to stay after you do it. Right. So okay, so you did the ER tech thing for what like, geez. For?

'Mimi' 6:09
Yeah, it was almost eight years, because I kind of went back and forth between wanting to go to like PA school or even med school. But then I was working more as a tech and seeing how those roles, like interact with patients and stuff. And I was like, I don't know, there's really not that much patient interaction. But I really liked the like, hands on tasky skill stuff. So I was like, I can still do that as a nurse and like help providers with those, like skills and tasks and procedures as a nurse and still get more patient contact. So I ended up going to nursing school. Let's see, I actually started before COVID. And then the place that I was working at the time, the ER had mandatory overtime. And I was like, I can't do school and work with mandatory overtime. So something's gotta give. And I took a break in school, actually, because obviously, my job was my health insurance. And I can't go without health insurance. So I took like a year and a half break in school and just did like online, general education classes to stay with it. And then went back. Let's see two years ago now, three years ago,

Scott Benner 7:23
what pushed you down and what pushed you to go back and finish?

'Mimi' 7:27
I loved being a tech. Honestly, if it paid a livable wage, I would probably do that forever. But it didn't. I was on the East Coast and the cost of living was really high. So I was like, I have to finish something to make more money. And I'm really happy with my decision actually to take a break because nursing school is very cutthroat, especially working full time and being in school full time. So full time for like nursing in hospitals, 36 hours, so I was working 36 hours a week had 24 hours of clinical a week, plus probably close to 1012 hours of lecture a week.

Scott Benner 8:04
36 type or 30. And that does like 70 hours worth of work for the degree. Yeah, and

'Mimi' 8:11
that's not including, like sleeping, and eating and going to the gym and like

Scott Benner 8:16
being a human being. And you were working you would have to work to Yeah,

'Mimi' 8:20
so it was a lot it was very time consuming. And most nursing schools, you have to have an average of 80% to be passing. So it's not like C's get degrees like you'll be fine. Do the bare minimum and you can be a nurse. So it was very time intensive. And like if you showed up late to lecture, you don't get to enter the room. And if you don't get to enter the room, you only get to miss three lectures that semester like it's very cutthroat. So taking a break was probably the best thing I could have possibly done for myself and I have absolutely no regrets even though at the time I was like wow, could have been a nurse two years ago but when

Scott Benner 9:00
you say cutthroat you mean unforgiving? Where do you mean there are actually people out there trying to knock you down? US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for yours, you can as well. Us med.com/juice box or call 888-721-1514 Use the link or the number get your free benefits check it get started today with us med if you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action Luckily G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage EVO Capo pen and how to use it. They need to know how to use G vo Capo pen before an emergency situation happens. Learn more about YG vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit GE voc glucagon.com/risk For safety information.

'Mimi' 10:42
I think it kind of depends on the program. But it does feel like they're kind of out to get you sometimes. Our clinical Instructure instructors are part time staff so they don't teach like any lecture or anything. They're strictly clinical. So you go to the hospital and you practice your skills and patient interactions with a bedside nurse. And some of those instructors. I think nursing is a very young profession, which a lot of people know a lot of people say they don't like but then a lot of people also contribute to. So it was kind of like they don't want to see you fail. But if you start to go down that route, they're not going to help you kind of thing. Okay, they want you to like figure it out on your own. And that's not the easiest thing to do when someone's life is in your hands. It's really tough. I just I always say cutthroat, but like, there's some professors that Like genuinely want the best for you and will do everything in their power to help you pass. And then there's some that are like, Well, if you can't figure it out, you're not meant to be a nurse.

Scott Benner 11:48
Have you had experience, I guess, with people who take joy in the failure? Or do you think they think they're washing you out and saving the profession from someone who's not prepared and couldn't do it?

'Mimi' 12:01
I would like to think it's the latter. Like they want strong nurses out of school. But a lot of nursing, you don't learn in school, you learn it on the job. So if you can't make it to the job, you're never going to become a strong nurse. The same people are the ones complaining about like being overworked and understaffed because we can't get good nurses and like, you're not giving nurses the opportunity to become nurses.

Scott Benner 12:27
Is it a hazing?

'Mimi' 12:29
I think it really depends on honestly, your geographical location. Because like I said, I checked on the East Coast for a long time. And it's a very densely populated area that I was in. And nursing is much different there than where I am now, which is like, kind of Midwest Pacific Northwest. And nursing here is I tell people all the time, it's so much better, that patients are genuinely nicer. I feel like we have more time to spend with our patients. They're almost healthier here. Because people live such an outdoors, like active lifestyle, it's just almost easier to care for them because they want the best for themselves. So my experience out here has been so much more positive than any experience I ever had during nursing school on the East Coast or even as a tech on the East Coast. Okay.

Scott Benner 13:20
I wonder if your nursing school experience would have been different? Had you done it somewhere else?

'Mimi' 13:25
Maybe right, I would like to think so. We see a lot of nursing students in my current er, and they all seem like very excited to become a nurse. Wow, my classmates were like, dreading it.

Scott Benner 13:41
So yeah, the process is so bizarre. No, it's not the process of going through nursing school makes you just think, Oh, this is going to be if this is what this was, then the job is going to be 1000 times worse.

'Mimi' 13:53
Yeah. And honestly, during nursing school, I thought I was going to be a bad nurse. Because we did all of our clinical like on inpatient units or not in the ER, and the ER was the only thing I really knew. So I was like, I feel like I'm supposed to be doing more things. But I don't know what those things are here. And the documentation was very different. And I was like, if this like my instructor had to keep, like prompting me to do things and I'm like, I feel like I should be better at this. Like I have a lot of clinical experience and very comfortable with patients. So like, why am I struggling so hard with this? And then as soon as I got back into the ER, I was like, oh, okay, I am a good nurse, I'm going to be fine. I don't know why I felt that way in a different setting, but it's not me.

Scott Benner 14:42
During nursing school, how are things broken down? I think people listening, you know, they go to a hospital and they expect the first person that they intersect and every person thereafter to have a complete understanding of what's going on and their needs, which it seems unreasonable to me but at the same time You know, what else am I supposed to think? Because a patient walking in like I come in and I have a disorder, I have a disease. I have type one. And I'm here for that. I feel like you're supposed to know but you don't really know. Right? You do. What is it that a nurse is prepared for in nursing school is my question. In

'Mimi' 15:16
nursing school, we are prepared for taking tests. As bad as it sounds. A lot of nursing schools are just focused on pass or success rate for the boards, which is called NCLEX. I don't remember what that stands for. But it's like your national registry. You take the exam, you pass and then you're officially a registered nurse. So like, just because you're done nursing school doesn't mean you're a nurse yet.

Scott Benner 15:41
So nursing school taught you how to take nursing school tests.

Unknown Speaker 15:44
Yes, okay

'Mimi' 15:46
with understanding of basic disease processes and the human body. So your first semester of nursing school was basically like an introduction to med surg. And med surg is just like general medicine. A lot of the chronic things that people deal with mostly like heart failure, COPD, and basic like taking vital signs and how to do a bed change and stuff like that. Second semester, this is different for every program, it's generally broken down. Similarly, second semester was med surg two and maternal and fetal medicine. So like OB, third semester was med surg three, and mental health. And then fourth semester for us was like critical care, and er, which it wasn't really a ton of Emergency Medicine stuff. But it was just like, really critical thinking and like, disease processes that would lead you in the ICU kind of thing.

Scott Benner 16:50
So you get a background of a general overview of what everyone most likely comes in with. And then it's learned on the job after that. Oh,

'Mimi' 17:00
yeah, I learned way more as a tech being very vocal with my nurses and providers in my er, than I did in nursing school. Nursing School did teach me how to test questions and break them down to where if I don't know the answer, I can figure out the answer from the question and like process of elimination. But yeah, I didn't really learn a ton of information in nursing school other than like, OB and fetal medicine, because like, I did not know anything about that, because that's not anything we deal with in the ER at all. Yeah, usually. But I struggled with that semester, the entire semester, I was not passing until the final exam, I took the final and got like a 90%. And that brought me 1% of passing. It's

Scott Benner 17:50
funny, you're describing nursing school, like an LSAT prep course.

'Mimi' 17:54
That's exactly how it felt. Okay,

Scott Benner 17:56
have you taken one of those LSAT preps?

'Mimi' 17:58
Oh, a long time ago, but

Scott Benner 18:01
I have same idea like this is how you break down a question. This is how you figure something out when you don't know the answer to it. Like, here's how you pass the test. Yeah,

'Mimi' 18:09
that's exactly right. And like I said, it's because they want us to have that higher testing percentage in order to pass boards. Because if you so if I graduated, and like, I think it's less than 70% of my graduating class doesn't pass boards, we lose our accreditation. So they want everyone to pass boards, whether they're a competent nurse or not. They want them to be able to answer the questions correctly to pass.

Scott Benner 18:37
So I'm getting so it's possible, I'm getting a nurse that was just kind of pushed through. Yes, unfortunately, that the institution could continue on. Yeah. Every time we set a rule, it seems that just people find a different way to break it. Like you know what I mean? Like you get understand in the beginning, where somebody's like, Look, you have to pass at least 70% of the people to keep your accreditation as a, you know, a place that's good at teaching people how to be a nurse, but instead, to quickly turn it into a business thing, where they're like, well, we just got to get them through so that we don't lose the accreditation, because that's where we make our money selling nursing to people. Yeah,

'Mimi' 19:13
yeah. And I actually went to an Associate's program. So I have my associates, associate's degree in nursing versus a bachelor's in nursing. And at least where I came from on the East Coast, our school did have a much better reputation of our graduates versus some of the bachelors programs, because we had more required clinical hours. So while they are really like pushing us to just test well, we also were required to do a lot more hands on experience time, which I think is a huge benefit. Even though we have more than most schools. I still think more is better, especially with my background, like during nursing school. Yeah, I had 24 hours of clinical week, but I was also working in addition Not 36. So that's like another 36 hours of exposure to patient care for me. So I think that prepared me more than anything for my current job. Yeah, I

Scott Benner 20:11
once had a nickname NICU nurse tell me that they, they laugh at the kids that come out of like a four year bachelor's program from a private college, you ended up spending 60 $80,000 on their undergrad to be nurses. And they're like, you could, you could have done that in community college for four grand. And yeah,

'Mimi' 20:30
that's exactly what I tell people to like, where I am now, there's not really many community colleges. So it's not really a an option here. But because I was working full time, I didn't pay anything for my degree. My hospital paid for it.

Scott Benner 20:46
Oh, because you can Oh, that's right, because you kind of went back to school while you were a met. So once you were attacked, you told them look, I want to go back and get my RN, and they're like, well pay for it. Yeah. So

'Mimi' 20:57
depending on your hospital, despite what program you're doing, I think they reimburse up to $2,500 a year for undergraduate, and 3500 a year for post grad. But then there's some hospitals that also have like a Nursing Scholarship Program, where they'll pay for it. And you owe the hospital like two years of employment after versa. They say, some people take their chances and leave. And they're like, well, if they want me to pay it back, they can find me.

Scott Benner 21:29
Find me? Well, they did take a risk, because you really screwed over that. The elderly care place. Yeah, exactly. Like I can blow right out of here.

'Mimi' 21:41
I actually did leave before my time was like, due for my tuition reimbursement. It was like, I think one year after the last payout. And I hadn't even graduated before I put in my notice, because I knew I was moving. But the hospital that I was working at, I just was not interested in staying. And like I said, the culture of like East Coast medicine or religious a densely populated area was not a great culture to work in. And I wanted it to be at a trauma receiving hospital versus a hospital that receives a very sick or high acuity from a patient and then ships them somewhere else. Yeah, I had worked in that environment for long enough. And I was like, I kind of want to be on the receiving end and like, see more acutely ill or injured people. I know, it sounds kind of twisted. But I really liked like critical thinking and like more sick patients.

Scott Benner 22:36
Gotcha. My wife once described her job as like King of the Mountain. She's like, everybody below you is trying to knock you off the mountain. Like just, it's nonstop. She's like, it never ever stops. And you know, you're in meetings, and you have to say things in certain ways so that people can take advantage of your words, if you miss speak, and they're always everybody's throwing everybody ever under every bus they can find and all just, you know, ladder climbing, trying to trying to get up there. I mean, you moved halfway across the country, I don't want to tell people where you are. But you move pretty far getting away from getting away from all that. Yeah,

'Mimi' 23:13
I moved, I think it's actually like 2073 miles or something away from where I was.

Scott Benner 23:21
So if I asked you to, you know, blow the whistle on nursing, what are the things that popped to your mind right away that you'd want to share with people that are happening that they wouldn't imagine? I

'Mimi' 23:32
don't really see much at my current job. But as most of my background was that my most recent previous job, a lot of nurses hate being nurses, they do the bare minimum, and they protect their licenses the best they can. And they don't really advocate for their patient. They don't use that critical thinking, like prevent future problems, which it comes from both the nurse and the patient, because a lot of patients don't even want to help themselves. So what are we going to say that's going to help them. So there's just so much burnout, that it's tough to provide really good care, because they don't want it like patients want a quick fix. They want a pill to make their blood pressure better, instead of changing their diet or their lifestyle. And you give them that pill and then they go on their way and you'll see them in six months for some other medical emergency. Burnout is just so severe in nursing right now that it's really hard to want to provide good care. And especially in like an ER you're surrounded by your co workers, and if they don't want the best for the patient and like you kind of just like almost stoop to their level and it's really hard to change the energy in that situation.

Scott Benner 24:50
So going, going back to the first step of that. You said that a lot of nurses you know, don't want to be nurses. So using your story, to try to surmise Are we just becoming an RN for the, because it pays more? Do you think they want to help people when they get there? And they fall into the machine and the apathy? And they're like, Oh, what am I trying for?

'Mimi' 25:11
Yeah, I think it's a little bit of a ladder. But I think a lot of nurses also don't have the like, real life nursing experience that I bring with all of my tech experience. So like, they don't really know what they're getting themselves into. Granted, you have your clinical nursing school, but that is, so it's like not self directed at all. So like, every minute of every day is structured, you walk into clinical, and you have a piece of paper saying, at 7am, you go in and introduce yourself to your patient. At 8am, you go do an assessment, at 9am, you pass morning meds at 10am. You make sure no one needs to go to the bathroom. Like, it's just so programmed into your head that everything is like a timed process. Yeah, that if anything skews from that you like panic, like there's no autonomy in clinical and also when you're forced to use autonomy as a nurse after school. I think people really struggle with that. So they get out into the field, and they're like, Oh, this is not what I've done. And I'm uncomfortable. And now I'm just gonna, like fall into a pattern of what everyone else is doing. Because it works for them. So it'll work for me, you'd

Scott Benner 26:23
like answered an ad that was like, you want to work outside? Do you like having the wind in your hair? Do you like driving, you'd be like, Oh my God, it's amazing that you realize that you're like, gonna ride the back of a garbage truck. And they left out the part where there'll be maggots and hot bags of garbage all day. And like, so yeah. It's not quite what they think until they get there. And they experience it. And they're like, Oh, I didn't want this. But now it's too late.

'Mimi' 26:46
Yeah, and it's really, it's really tough to because people think emergency medicine, they're thinking like trauma and like broken bones and all kinds of stuff. And, as I'm sure everyone knows, there's like a huge mental health crisis across the country, probably the world, but we see a lot of mental health patients. And that's, it is an emergency, it's an emergency for them. And it's a crisis. But like, it's not the like thrilling emergency that everyone thinks they're going to get when they work in the ER, we see a lot of homeless patients. We see a lot of patients who don't have insurance. So the ER is the only place that will treat them prior to payment. Like it's a healthcare crisis, not just a mental health crisis. Let me rephrase that.

Scott Benner 27:32
One of the people who's been on the show already and recorded for this said that she's like a, I forget how she said it. Like I I'm sorry to say this, she said, but there are a lot of nurses who are trauma hoarse. She told me yeah,

'Mimi' 27:43
we can trauma junkies and like, I won't deny that I am not a trauma junkie, I love trauma, but it's also something that will burn you out really fast, too. So you see the worst of the worst. And if you see that, three shifts in a row, you get off and you're just like, wow, that was really emotionally taxing. Like as good as you can be at dissociating, it's still taxing probably

Scott Benner 28:08
like an adrenal overload, right? Like all that. Oh, for sure. The dopamine kick you get from it, and the adrenaline and everything. And then is it? Is it like doing drugs?

'Mimi' 28:16
I don't know, because I haven't done drugs. Very good. Mimi, there you go. But it is very exhilarating. There's a roller it's a good job. Yeah. Okay. There are certain parts of the job that I'm like, Wow, this must be like what cocaine feels like. Like one time, I put an IV in a six day old premature infant who, like the IV team couldn't even get access in I put in like a very small IV in her ankle. And I was just like, wow, they stuck this kid like eight times. I got it on the first try. I am on this high, and I'm gonna ride it the rest of my shift like, I'm unstoppable. But like, then you crash from that, like, I got home and I couldn't sleep. And then I was so tired. Once I like, came down off at high I was like overtired couldn't fall asleep. And then I like barely slept before going back for my next shift. And I was like, ah, was it worth

Scott Benner 29:12
it? Yeah. And then the next day a lady poops on you. Yeah,

'Mimi' 29:16
exactly. Or you have like a patient with bedbugs. or somebody's like, trying to punch you like, it's, it's chaos all the time.

Scott Benner 29:25
They're talking to you and spider man at the same time. And you're like, Oh, this is yeah, great. I gotcha.

'Mimi' 29:31
Trying to like, get the bugs out from under their skin. And you're like, please don't do that in front of me. And

Scott Benner 29:36
then when you get to like a regular old, everyday normal person who's just in there and sick their thing is, like banal and at least it's not insane. And then they don't get the level of care that you'd love to give to them because you have all these other influences bothering you. These variables. You're a real person to you have all these variables pushing on you. And then when you probably get a moment where it's not, oh my God, look at this amazing thing I did or Jesus, please stop pooping on the wall. It's just like, that's boring. It's regular, and you just get it done. And then you go back to this 10 o'clock do you have to pay blah, blah, you go to the schedule, you get them out of there. And that person later probably thinks I did not get very good care.

'Mimi' 30:15
Yeah, and it's really tough. Again, with the healthcare crisis, we're getting all these patients in the ER that need to be admitted to the hospital. And then there's no either open beds, or there's open beds, and no nurses to care for those open beds. So those patients just sit in the ER for sometimes days on end, we call them borders. At my hospital, it's pretty standard that you have four beds in your assignment. And if I have two borders, and then two er beds, that I could be turning every couple of hours with very sick, critical patients. My borders are gonna have to wait, whether it's scheduled meds are getting them to the bathroom. Luckily, we have great Tech's very work that'll help do most of those things. If they can, like, oh, we need to put them on a hospital bed to make them more comfortable or take them to the bathroom or something like that. But like if I get a patient in one of my er beds, it's having a heart attack that requires all of my attention until they leave my room. Right. So then yeah, my boarders will not get the attention that they need for possibly up to like four hours, I say. So it's definitely a disservice to them.

Scott Benner 31:24
I want to go back to the other thing that you said when you were kind of laying out the job, which is people are there because they're sick, and they recognize that they need help, but they're not necessarily the best shepherds of their own health to begin with. Yeah. And so is it like being a lifeguard for a person who's trying to drown?

'Mimi' 31:45
Yes, a lot of times, like I said, people are generally in better health here than they were back on the East Coast. Like people who have COPD or heart failure, they've had these things for a better portion of their late life, let's just say they're like 80 years old, they've probably had COPD, since they were 5560. They've also smoked a pack of cigarettes a day, every day for their entire life really, and they have no desire to quit. So while I am at the room next door dealing with a patient having a heart attack, they're on oxygen, they're vitally stable. They're pounding their call that and because they need their nicotine patch. And then I can't get them their nicotine patch in time. So they're like, I'm leaving against medical advice, because I need a cigarette. So then I have to page the doctor that's taking care of them, because while they're in ER patient, the ER doctors right there, but when the reporter, the admitting physician is usually not in the ER, they're somewhere else. So I need to page them and either get them on the phone or have them come talk to the patient. Because nothing I say is going to change their mind and make them want to stay. They have to hear from a doctor and that's most patients. So like, you're just a nurse, what do

Scott Benner 33:01
you know? Yeah, the addiction is driving them to at that moment. Yeah. And

'Mimi' 33:05
it's the same with like alcoholics to Alcoholics can withdraw and very quickly be an ICU level patient. Despite what we can give them. It's not going to help their withdraws. It's not going to help their their tremors and all of the symptoms are experiencing. So they just want to leave and drink to feel better.

Scott Benner 33:23
I was like 16 years old, my father took me to lunch. And we were heading into this diner. And this a long time ago, so used to walk into a diner and in the vestibule there were two things like Miss Pac Man and cigarette machines. And I would imagine most people don't even know what a cigarette machine looks like, to be perfectly honest, right? But there used to be these things. You put quarters and you pull the lever back and a pack of smokes, which smoke drop out of it. So my dad would go into the diner. He would put quarters in take a cigarettes go in and sit and you could smoke in restaurants. So he'd sit there and smoke while he was waiting for his food. And we walk in and the machine does not have his brand. And it's out of his brand and his backup brand. For old school smokers. My dad smoked Chesterfield kings, which were filterless cigarettes. And then in a pinch, he'd smoke a Pall Mall if he had to. I said, Oh, that there's no cigarettes. And he's like, yeah, he goes, it'll be fine. So we go in, and we sit down. And I don't think we ordered before he broke a sweat. And then his he got red in the face. And you could see the anxiety hit him. You don't I mean, and then the West, and then immediately the withdrawal. And to the point where I was like, I can go across the street to the gas station and get cigarettes for you. And he goes, No, no, don't worry about that. And then two minutes later, he's pulling money out of his pocket. Go get those cigarettes for me. Yeah. Yeah.

'Mimi' 34:50
And that's how it is for drinkers too. Except I feel like the symptoms of withdrawal are like they're much worse. It's almost like having like the flu. Like you'll get a fever. Yeah, you'll be having like the cold sweats, vomiting, hallucinations, like, they are very time intensive patients. And in the hospital, everyone is so worried about falls. Because if a patient is there for something, and they fall, whether they're whether they sustain an injury or not, it's a big deal. And especially when they're hallucinating, they're vomiting. They have to go to the bathroom frequently. They're always trying to get out of bed. Yeah, they're a huge fall risk. So you either need a tech or a senator to sit with them, or you need to be within earshot. They're very time

Scott Benner 35:36
intensive, called on fall. Yeah.

'Mimi' 35:39
Don't fall. Stay with me called

Scott Benner 35:41
Don't sue us. Exactly. Call

'Mimi' 35:45
don't fall and give yourself a brain bleed.

Scott Benner 35:49
So here's what I'm getting. By the way, I don't have we even touched on the things you were going to talk about. No, not at all. Go to that stuff, then I'll go back to my thing. What

'Mimi' 35:58
did you want to talk about? So I tell type one patients all the time that I understand their frustrations and how the hospital does a huge disservice to well control diabetics. I hear that I know it. I, personally, relating to the previous ER nurse that was on the podcast. Similarly, I don't want to be admitted to the hospital. I know it's going to do bad things for my control. But I do trust about 90% of my co workers to take great care of me, including our physicians.

Scott Benner 36:31
You heard the the nurse who said I wouldn't go to my own er, if I had a problem for my diabetes. Correct? Yeah.

'Mimi' 36:38
I would absolutely go to my own er, I don't, it might have something to do with personalities. Obviously, I don't know the other nurse that was on here. But I am very open about my diabetes. I tell everyone I work with please ask me questions. If it's going to help you understand something better or help a patient. I often get text messages and phone calls. While I'm off saying like, hey, my patient has an insulin pump or like a CGM. How do I take it off, which if a patient isn't able to tell a nurse how to take their pump off, that pump absolutely needs to come off, because obviously, they're not going to be able to do what they need to do to manage it. And on the same hand, there's also an admitting physician at my hospital, we'll call her, Dr. Jones. She is a huge advocate for type loans as well. And she has an excellent order set for pharmacy for patients to keep their insulin pumps. So anytime I have a type one patient, and she is not the admitting physician, I message the admitting physician and say please consult with Dr. Jones for this patient's insulin pump orders. And I would say probably 60% of the time it happens. But that's again, only when patients are like alert and oriented enough to tell me like their settings and stuff like that. There have been plenty of instances where a patient tells me that they want to keep their insulin pump, but they have to get in contact with your endocrinologist to find out their settings. And I was like, I've had Omnipod T slim, and Medtronic in my 20 Some years of diabetes. If you don't know how to find the settings in your pump, that's alarming to me. Yeah. And I don't feel comfortable letting you keep your pump if you don't know how to find your settings, right.

Scott Benner 38:25
I wish you wouldn't have said Dr. Jones, by the way, because it made me think of Indiana Jones. And then it made me then it made me think that I wonder if people know that Indiana was the dog in the family. Nevermind. And that's what happened to me while I was listening to you just now. So you're telling me you're telling me that if someone comes in with a complete inability to even understand their device, how are you supposed to believe they know what they're doing? Exactly. Okay. And so they're set up. And they've probably got a rhythm going. And they, you know, they push this button, they say this much for this meal, but they really don't know what's happening is the thing that's been set up for them. And it's running, but they they couldn't be the stewards of it. So this is an interesting problem, because all these problems are multifaceted. I'm going to I'm going to tell you that, you know, the first half hour of this conversation, what I heard was that nurses, people, doctors, and the system are all entities that have multiple bool variables impacting them, yes. And depending on your perspective, like you can go you could go into an ER and be me with my kid. And I'll be able to say that nurse doesn't know anything about diabetes. And I'll be right because I know a lot about it. And then there could be another person that goes into the can't find the settings on their pump who would think that you know a ton about diabetes because you know more than they do. So it's it's varying levels of understanding. Coupled with your perspective, your death desire. And then all these things have to come together over and over again, between you and the nurse, who is also sitting on four other beds and has the pressure of moving people out, holding people who can't leave, but can't go upstairs. And if there is an emergency, abandoning all those other people to get to that emergency, and then on top of that, what you have is that adrenaline, this isn't even the job you wanted. The doctors and asshole, like all the other things that could possibly come with this are impacting you while you're trying to help those four people and three of them probably don't even want to help themselves.

'Mimi' 40:38
Yes, exactly. Okay, there's so many moving parts to being a nurse, being a doctor being a patient, like, it is impossible, like there's no one size fits all, as we all know, like, diabetes is so complex and different from person to person. And like I tell all my co workers, my diabetes is different based on the week of the month, whether I'm on my period, or I'm ovulating or I'm working night shift, or I'm working day shift, everything is different. So if I'm here for like, appendicitis, or I broke my arm, it's gonna be different. Like, I'm not even going to be able to control it. Well, yeah. So why should I expect them to? It's interesting,

Scott Benner 41:19
but you can see the other side of it too, right? Like if I was just an everyday, everyday person, and I have type two diabetes, I'm not doing a great job with it. My a one sees the nines, and I'm having some obvious health issues, metabolic issues and some other things that led me to the emergency room. When I get there. I'm probably hoping you're going to tell me how to keep this from happening again. And you're probably thinking, even if I knew what to tell this person, they wouldn't do it anyway. Or

'Mimi' 41:48
even if we know what to tell this person, we told them and they're still not going to do it anyway. Or

Scott Benner 41:53
even understand at times. Yeah, yeah. The problem is people Yes. But on all sides of the problem, we are having a problem of humanity is what we're having. Yes, we're very stubborn beings. In the past, if you had a mental health concern, you didn't really go to a regular hospital. There were other facilities, we don't really do that anymore. So everybody goes to a centralized place. So there used to be, there'd be a trauma center for trauma, there'd be you know, a regular, like local hospital for, you know, regular old problems, there'd be a mental health facility for mental health problems. These people would mostly be filtered in through EMS, or police so they could take them to the right places. And now everything happens in one spot, and everybody is expected to be able to deal with all of it.

'Mimi' 42:45
So yes and no, okay, there are ambulatory places like you can just walk into a mental health facility. Depending on the type of crisis you're having, they're going to send you to the ER anyway to make sure it's not a medical emergency first. So, like if someone is extremely intoxicated on drugs or alcohol, they can't be in those mental health facilities. Because if they were to withdraw, it would be a medical emergency, and they would be at an inappropriate place. We just had, a lot of people get really bogged down by the mental health patients coming into the ER. But sometimes we find that it's not a mental health crisis, you can have hallucinations because you have a brain tumor, not because you're bipolar or schizophrenic.

Scott Benner 43:33
I say. So you like the idea that they come to a centralized place where everybody where people have like a medical background? Yes,

'Mimi' 43:40
I like it to the extent of medically clearing and then getting them out. As soon as they're medically clear, which doesn't happen. Patients can be medically cleared and then still sit in the ER for 48 to 72 hours before an inpatient bed opens up in a mental health facility.

Scott Benner 43:59
So do we have a lack of facilities or too many people who need them? Both? I never have one of these conversations and feel good when they're over by the way.

'Mimi' 44:08
I know. Yeah. I've

Scott Benner 44:09
never like oh, good answer. I've actually never had anybody give me an answer. I recorded with a seat a CDE the other day, who has type one? And at the end, I said, What do you think the answers are? And they're like, I don't think there's an answer to this problem. I'm like, Oh, great.

'Mimi' 44:25
Yeah, it's really tough too. Because even if there were enough facilities, there wouldn't be enough nurses. So and the nurse shortage is not a shortage of people who want to be nurses. It's a shortage of people who want to be paid appropriately for what we're dealing with.

Scott Benner 44:44
So it's an underpaid. You find it to be an underpaid profession. What's a nurse make?

'Mimi' 44:50
Because I'm anonymous. I started out as it's considered a new grad because I'm fresh out of school despite my years Have Tech experience. I'm still a new grad. Right? I started out at 34. Oh, for an hour, I got a significant lump sum to move as far as I did, and a sign on bonus and housing savings.

Scott Benner 45:15
Oh, okay, slow, slow down for a second. When you were a tech, what did you make an hour?

'Mimi' 45:19
Oh, gosh, around $20 an hour. So

Scott Benner 45:23
about the same age. That's insane. Okay. And then minimum

'Mimi' 45:27
wage where I was living, I did get benefits, but I still had to pay a significant amount out of pocket for, you know, all of the

Scott Benner 45:35
things Yeah. Then you became a nurse, they moved you all the way up to 34. Oh, that Oh, force insulting, by the way, 3404 to be a nurse. And then that was east coast, then you kind of went middle of the country. So the middle of the country would be 3404. That was the day that I received at my old job where I was the tech was, I

'Mimi' 45:55
think $29 Oh,

Scott Benner 45:57
they bumped you up to 29. You said no, I'll go I'm going to take the extra five an hour and go to the move across the country. They also give you a bonus and a moving stipend. Would you tell me what it was?

'Mimi' 46:06
Yeah, so my sign on bonus was $10,000, which is taxed. My relocation bonus was 8000, which is also taxed, right. And then I got a housing stipend of $1,000 a month for nine months, which is also taxed, but still.

Scott Benner 46:21
So they basically gave you 28 $27,000 tax. I'm just gonna knock 30% off of it just for the fun of it here. So okay. And that was to move uproot your entire life versus staying for $29 an hour.

'Mimi' 46:37
With no sign on bonus, no incentive to stay nothing,

Scott Benner 46:42
nothing to get you moving. Do you actually still have some of that money in the bank?

'Mimi' 46:45
Yes. And no, I acquired a pretty significant amount of credit card debt during nursing school because of medical supplies. Because I had to pay rent, which where I was living, I was paying like $2,200 a month for a 600 square foot studio. I actually sold my car and it was like commuting by bike. So I didn't have a car payment. And I was still struggling to make ends meet.

Scott Benner 47:10
So you were working hard and making concessions. And you still had to use credit cards to get through school. Yeah. And then the bonus, you got to move the credit card debt wiped that out, basically.

'Mimi' 47:21
Yeah, that and like, it's expensive to move. The place that I lived in when I first got here, which I actually just move out of, I had to pay first last and a deposit upfront to move it. And then I actually only moved here with what fit and who suitcases and my dog. So the moving like of things was very inexpensive. It was just my flight. Yeah. But yeah, it was like $8,000 upfront to move into where I was living. And that doesn't count furnishing anything. Yeah. So

Scott Benner 47:51
what kind of dog fits into the luggage? He's

'Mimi' 47:55
a miniature Doxon. So he rides in a plane with me, like under the seat in front of me. Okay, that's like, how

Scott Benner 48:00
are we flying with a dog? Okay, that makes sense. Wow. And then you get there. 3404 an hour.

'Mimi' 48:08
Yeah, so that was my, that's my base pay. I've since gotten a raise. Because I've been here, I think it was either a market adjustment or like the annual raise, but the hospital gets, which was a whopping 71 cents. And then there's also shift differentials. So I was hired as night shift. But for my first three months, I was on day shift for orientation. I would work between 24 and 36 hours a week. And then I also had classes. So as a new nurse, you have to do like residency classes, we call them. And it's basically just like learning how to use equipment and like, basically procedures and protocols for different processes. I guess you could say like, there's a whole seminar on, like, blood gases and like our DKA protocol, which is actually I love but a lot of people find very confusing. So there's a whole class for it. And then we have classes for neonatal emergencies trauma, if someone's in cardiac arrest that like process. So there's a ton of classes you have to take right up front when you start as a new grad. So I was doing like 40 hours a week between classes and working at the bedside. And then once I finished all those classes, I was just at 36 hours a week and could pick up as much extra as I wanted. But once I came off orientation on next shift, so it's an additional, I think 460 an hour on night shift. If it's a night shift weekend, I believe it's 760 additional an hour. And then there's we also have like evening shift, so 11am to 11pm 3pm to 3am. That gets a different differential and stuff. So the only time I'm actually making 34 Now 75 is if I work a 7am to 7pm shift which She's not hired for so that's not why are you not making $70,000

Scott Benner 50:03
a year? Even? No. 60

'Mimi' 50:07
I think it's, uh, ah, it might have been 70. Okay, because I looked at my year to date, and that's including all my stipends and stuff, and I was like, around 97.

Scott Benner 50:18
And so and then you're gonna lose about 15% in tax, I'm actually googling this. So in 70,000, you'll lose about 15% in taxes. What's that, like? 10 grand? Yeah. And so, you're gonna, you're gonna walk away with 60 divided by 12. Hold on a second. 5000 a month? How much is your rent?

'Mimi' 50:39
So before when I was getting my stipend, it was 2240 because I decided I wanted a house with a yard for my dog, silly. We're in a cooped up, cooped up apartment before. We're back into an apartment now, but it's a much nicer one way more than 600 square feet.

Scott Benner 50:55
So now I'm paying about 1400 Okay, so you're losing 1400 Off the top for rent. I gotta imagine do you eat food? Right?

'Mimi' 51:04
I do. Yeah. So

Scott Benner 51:05
what do you $400 a month for food?

'Mimi' 51:08
That's what I budget. Yeah.

Scott Benner 51:10
Uh huh. That's what you budget. I heard what you said there. Do you have a car? I do have a car.

'Mimi' 51:14
Is there a payment? Oh, there is a steep payment? Yes. How much? 656 50?

Scott Benner 51:20
Got insurance. What's that? Like? $100 a month for car insurance. 131 30. Gas.

'Mimi' 51:30
I actually don't use a ton of gas.

Scott Benner 51:32
Let's say 100 a month? Yeah. Okay. Electric. Couple 100.

'Mimi' 51:40
Yeah, let's see my utilities. I bought 175 Because most of its incorporated in my 1400 for rent. Okay,

Scott Benner 51:50
so when you are all said and done. You've made what, like two grand left at the end of the month? About? Yeah. Okay. And so you have to work a year of your life to save $25,000. And that's if I get to save it. Yeah, but I'm gonna say you're not really gonna have $25,000 a month at the end of the year. Yeah, right. Okay. Yeah, yeah, we should ask people to be nurses is.

'Mimi' 52:17
Exactly. And like, there is a great appeal. I won't even live with this schedule. So keep in mind, that's an income working only three days a week. So I guess my 97 is actually mildly skewed. Because I work a lot of extra to get to that. Not every single week. But like, around Christmas, I worked 120 hours in 10 days, because I couldn't go home to see my family. My boyfriend went home to see his family and like, my friends hear from work. So I was like, I don't want to sit at home on my couch by myself on Christmas. So I'm just going to pick up extra go to work. Yeah, so yeah, I worked a lot of extra once I came off orientation. Summers are like trauma season. And since I was fresh off orientation, I was like, super eager to learn all of the processes, all of the equipment we use, which I now feel feel very comfortable and competent. And like, I am the most fit person to be in those scenarios, which is a great feeling after only being a nurse for a year. Not to like boast member riches here. But like, I feel very comfortable in my ability and my skill. Yeah, what you're doing. Yeah, so a lot of extra got me to 9070. Yeah,

Scott Benner 53:30
a lot of extra to get to that number. So I have to tell you, what strikes me over and over again, while we were just doing that little exercise is that if you're helping four people in a shift, I'm guessing that the hospitals being is billing those four people. And it's incredibly possible that your effort makes more money for the hospital in one day than they pay you in a year. Yeah, without a doubt. I mean, like he would probably work for a percentage. Yeah. So

'Mimi' 53:59
I don't want to call it to work around. But the way that people are making more is by leaving, like nursing as a hospital employee and going to an agency. So you can do like local travel or travel nursing and you'll make just about double you.

Scott Benner 54:17
That's insane to me, like why does the hospital just pay their good employees and keep them?

'Mimi' 54:22
No one knows. It's a it's a losing battle. We've been asking this question for years, because even before COVID Travel nurses made significantly more than staff nurses do. And you don't even have to travel. One of the travel nurses that I work with currently. He's been at my hospital for over a year, and travelers contracts are typically like 13 weeks. So he has to take like a week off in between and then he just signed another contract with the same hospital.

Scott Benner 54:50
It's not crazy to say either that if you went to your boss and said, Hey, look, I'm a good employee, pay me more money. Give me double. They'd say no, but you said if you said okay, well I'm gonna leave and Go to a become a travel nurse that they'd hire you back as a travel nurse. Oh, and they do it all the time. I'm glad everything makes sense. Nothing makes everyone jump out the window. We're in trouble. That's all. So, yeah. Okay. Yeah, it's not it's not it's a lot. It's a, you know, this is exactly the same when I talk. There's a therapist that comes on Erica, we talked about people's problems. And I this is exactly how I feel at the end of the hour with her to like, oh, just, yeah, it's such a multifaceted issue. Really layers, so many problems with all of it, like healthcare, hospitals, nursing,

'Mimi' 55:42
there's at least 100 Problems per each of those. Yeah,

Scott Benner 55:46
that we could sit here and drill down and talk about a lesson. If you're going to become a nurse, maybe you should want to do it. Maybe we can drill down at the doctor sign goat, maybe you can leave your ego aside and actually, you know, stop acting like you're God's gift of the situation. You could look at the institution and say, Hey, why don't you take a little less money and pay all these people so they could actually give people good service? And maybe you make people healthier? The patient's you could say, hey, what if you had a basic understanding of common ideas about health and took care of yourself a little bit? Oh,

'Mimi' 56:18
my gosh, yeah, the lack of knowledge that I didn't understand, that most people had about their body is absolutely insane to me, like, obviously, I've been diabetic for just over 20 years, I had no idea that most people didn't know how to read a nutrition label. One of my friends is a teacher for a like, they call it a nursing program, but it's for high schoolers. So it's a like, tech center type situation where they go there for their senior year of high school and get, you can get a CNA or nursing assistant, you can do cosmetology, you can do diesel mechanic. There's all different types of like, skills you can go into. So she teaches the I'm doing air quotes nursing program there, and one of her students as a type one. So of course, she like called me and was like, Hey, do you drink, like Powerade and Gatorade and stuff regularly? And I was like, no, like, I think this year was the first time in my entire life, I'd had Gatorade that wasn't like the zero or like G two or whatever it's called. Right? And she's like, Yeah, my type one has been drinking it like almost every day. And I asked her if she was like doing insulin for it. And she said, No. So she took the power a bottle and looked at the nutrition label. And she's like, said 36 grams. And I was like, Yeah, and that's only per serving. And there's two servings in that bar, sometimes two and a half servings in the bottle. Yeah. And she was absolutely blown away by that. I'm like, Yeah, that's like, you have to look at the servings. She was like, Well, I never really thought about that. Like, ah, the luxuries of not being a diabetic.

Scott Benner 57:57
You know, I saw somebody eating like nachos. Right? Em from from a, from a from a restaurant. They give you a bowl of queso. It's like a softball size of, of liquid cheese. And I thought that's more liquid cheese and you're supposed to eat and five years. And yeah, no, no. And they're just in there like dip in and eaten and dip and eat. And I'm like, Oh my God, you're gonna die. Like you're asking.

'Mimi' 58:24
Literally, I went to Trader Joe's has probably been a while now. And I got they have a frozen like barbecue teriyaki chicken. And it has a lot of protein and not a lot of fat. And so I was checking out and they're like, Oh, why do you get this over? Like the orange chicken? Like, oh, it's like 20 grams less fat per serving. And they're like, Oh, interesting. I've never even looked at the label. And I was like, Oh my God, because the

Scott Benner 58:49
orange glaze is sugar. And then the your body metabolizes the sugar and makes it and stores it is fat. And yeah, these are not big ideas. So not

'Mimi' 58:58
at all. And it's so like, I just like, I don't know why anything surprises me anymore. Like, especially working in the ER, maybe it's because in the ER, I expect people to not know things. But like out in the real world. I think like, Oh, these people have made it this far. Like, they know basic things. But they don't. Yeah, and It shocks me every time.

Scott Benner 59:21
Yeah, don't stop being shocked. It's about opportunity to learn things. Yes. And it's the stuff that no one talks like people don't talk about this stuff. They just they don't like the makeup baby, you feed it something you can afford. You know, you make a little more money or you don't you you know that's the way your food goes. You're not a nutritionist you've never nobody's ever talked to you about this before. And all of a sudden, healthy just means you know, we this is what we eat here hopefully means like, alive and not having to see a doctor frequently right? It's the same exact problem. As when I say to somebody hey, like how's everyone seeing they go? Oh, it's good. Like I learned in the Beginning of making the podcast not to stop at that, I'd say what is it? What's the number? Because the astonishing a number of people who told me that their agency was good, but then told me it was eight and a half. And I was like, well, good compared to what they'd say won't good compared to where it started where it started. I was like, on 11. Now it's at eight and a half, I'm doing good. And I'm like, No, you're doing better. Words are important. And you know, like, like, You're doing better, you're not doing good. Good is, you know, in the fives. Yeah, pretty goods in the sixes, I need help is in the sevens, eight and a half. It's not, I'm doing pretty good. You know, you know, eight and a half is I'm going to be in this emergency room one day, with, you know, some sort of, and they don't know that they don't know that if you live if a type two, for example, lives with an eight and a half a one see their whole life, that by the time they're in their 50s, they are 100% going to be in a emergency room talking to you. Without

'Mimi' 1:00:53
a doubt, and it's not even likely going to be a diabetes. Crisis. Right? It'll be going to be a secondary problem.

Scott Benner 1:01:02
Renal? Cardiac. Yeah, right. Yeah. Yeah. And

'Mimi' 1:01:07
a little blister on their foot that's now turning black and they can't feel it. Yeah,

Scott Benner 1:01:11
right. Right. Look at all the stuff that comes along with that, that nobody. You can say nobody teaches you. But you know, when the stuff I know about diabetes, I had to teach myself. And is it they didn't teach you or you weren't willing to learn? And I do want to say, and sometimes people don't have the capacity. I don't mean that in a harsh way. Like, there's some people who just their minds don't work that way. You don't I mean, they're not going to be inquisitive about things they maybe don't have, you know, that kind of desire. It's not I don't think of that as purposeful, by the way, like, that's where I want somebody to step in and do something, right. And it's funny, because in my heart, I want the person that the hospitals step up and go, hey, here are the things you probably don't know about your life and health, except what you're telling me is that even if you did that, you think what you'd get mostly is go to hell give me a pill, I gotta get out of here.

'Mimi' 1:02:00
Exactly. That is exactly right. Like, I am always stunned by people who come to us for help, and then refuse what we're offering, because they read somewhere on the internet that this is a better option. And that's what they want. And we always kind of joke as nurses like, this isn't the drive thru, you don't get to come here and tell us what you want when you're asking for our help. Because if you knew what you needed, and we're capable of getting it, you wouldn't be coming to us for the hair. Like, yeah, this

Scott Benner 1:02:31
is a never ending.

'Mimi' 1:02:33
Yeah, we get traumas that come in all the time. And granted, they might not be the most severe trauma they've ever sustained. But they were transferred to us either from an outside hospital or from seen based on the mechanism of injury. And they decided that they needed a higher level of care of trauma care, which is us. And it's typically with spinal injuries. So this one very specific one I'm thinking of this man was on a trampoline. His two small children were there. I think they were like, five and eight, maybe. And he dove into a shallow pool off of the trampoline, and had temporary paralysis and his kids had to pull him out of the water. Oh, he came to us with a neck brace on me calm see collars, a cervical collar. And he kept nodding yes and no. And it was making me so angry. Because I'm like, if you have a spinal, specifically a cervical spinal fracture, and you keep nodding yes and no, you could be paralyzed forever. And I probably overslept a little bit here, we were over in CAT scan. I told him many times to stop nodding yes and no. I grabbed his cheeks and got really close to his face. And I was like, you have small children at home. I don't want to see you paralyzed because you weren't listening to me. Stop nodding yes and no. And like a tear, just like rolled down his face. And he stopped. And I was like, I'm sorry. I had to say it that way. But we see this all the time. Yeah, you're here for a reason.

Scott Benner 1:04:09
Yeah, it's so funny. It's funny, because I see like both sides have, like you said, like, you know, you're here and you're not going to do the thing. And but that person could easily make the the the argument and a real, very real argument. No one's ever told me that before. I know, you think it's something I should know. But I don't know that thing. And no one's ever said it. So that's where we're at. We're, it's an impasse like, medical people should be telling every person that they intersect the thing that they need to hear. And either that person takes that information and does something with it, or they don't, but you don't have the time for that. So you're going off of what you mostly see. And that's how the people who could be helped get missed. Exactly.

'Mimi' 1:04:51
Yeah. Like he was transferred from another hospital that was letting him like, walk around and like go to the bathroom. And I was like you absolutely will not be getting upright until we have your CT results. They transferred you here because we know more than they know. And we're going to treat you the way that we're supposed to treat you and that I'm sorry is not going to make you very happy. But you have to listen to us. And he was like, Okay, you're right. And I was like, Oh, am I really? So

Scott Benner 1:05:20
maybe what should I ever told me that before I fill up my car with those little packing peanuts, right? That way, if I have an accident, nothing happens to me. And then I never leave the ground floor of my house and get a house with those steps in it. And then I try to stay out of that. And I don't need 17 servings of Gatorade and I tried to stay out of hospital. This is what I'm trying to do this size of melted melted cheese. Ask yourself why does the cheese not coagulate? Yeah. Why? It's liquid? How is it doing that?

'Mimi' 1:05:54
Right? It was solid at one point. Not going back to solid. Like what's happening? Ask yourself what's in it? Yeah, why is it staying liquid like this? Okay, all right. I'm

Scott Benner 1:06:06
done. Good. Thank you. Did I miss them? Did I miss any out of my mind? But this? Why did I think this was a good idea? Why did I think having people on to tell me what was wrong was going to be a great idea. For me. It's bad for my soul. It's

'Mimi' 1:06:19
bad for everyone's thought and our mental health because I can say all of these things until I'm blue in the face and nothing will change. Nothing

Scott Benner 1:06:26
will change. Yeah, yeah. Okay. Well, then this is for the people who are going to take some sort of control of themselves and their lives and and try to avoid this stuff. Yeah, now, I hope so. Having said this, and I do like to reiterate this every time I can think of if I'm having an actual emergency. I should still go to the hospital, though. Oh,

'Mimi' 1:06:49
absolutely. Yeah. And I don't want to like drag anybody but in our Facebook group. For the podcast. There's people all the time, like questioning certain things like if they should go to the hospital. And more often than not, I'm like, Oh, my gosh, is this even a question? Like, I cannot believe that people would think not to. But I've also worked in other ers where I can absolutely see how going to the ER would be doing a disservice to them. But especially adults in the UK, we are not resilient, like children are like when I was diagnosed, my blood pH was 6.9, which is not survivable, like that is not compatible with life. So if my PH were 6.9, now, I would likely be dead. As a kid, you're much more resilient, you bounce back, your body can compensate a little bit better. But as an adult, if I even like if I'm sick, and even if I don't have ketones, my blood sugar is fine. If I follow up, I get very nervous. Like, okay, if my blood sugar goes low, and I can't keep anything down emergency, if my blood sugar is high, I'm giving myself insulin, it's not coming down. I'm throwing up emergency like, I see that all the time. So I understand I have a different understanding of it. But it is frightening. And like, we are very fragile people like not diabetics, but just humans, like humans are fragile. You don't have those compensatory mechanisms that children have. So if something goes sideways, it can go sideways and stay sideways forever. Like some things you just like, can't come back from. Like, I'm always scared, like, oh, one more like running with DKA kidney failure, or retinopathy. Like there's so many irreversible things that can happen. heart attacks and strokes, especially because we're diabetics. Like, we're very fragile.

Scott Benner 1:08:51
For my money, I like being prepared ahead of time, I have a small group of good doctors that are local to me that we have, you know, become patients of so that when we have certain problems, we're not searching. First of all, we know where to go to get somebody to help those same doctors can be helpful for you, when you're going to emergency situations as well. You'd be surprised that calling your GP who is actually a good person saying hey, here's what's wrong with me, I'm going into the hospital, could you call over there and let them know I'm coming, that actually helps getting to a hospital system where your doctor is affiliated with that helps. There's little things that you can do to be ready. You could also you know, do a little bit of research so that you know how things are handled at certain emergency room situations like what what are they going to do for me if I come in there and DK? How are they going to handle this? What do they know about this? I don't know. I just I like to be as prepared as possible without being a prepper I don't have a truck with a 700 gallon gas tank on it that only pulls fresh water in case zombies come or anything like that. But I do know where I would go if there was a problem, right? And you know, even at that you don't realize you could be Three miles from four hospitals and only one of them's a decent hospital. And you wouldn't know that. You know?

'Mimi' 1:10:06
Yeah, I am always done. There's a few very, very, very small hospitals that are not associated with any large or larger hospitals nearby currently, and the transfer patients to us all the time. And I'm like, It's a miracle, this patient made it to us alive. Like, I didn't even know that this place existed. Until right now they're telling me that this hospital down the street was taking care of this patient, and they're like, knocking on death's door. I'm like, how are they allowed to be a hospital? Like, how have they kept their doors open for this long. And God forbid a patient who doesn't know anything about the area has a medical emergency and goes there, like, it is terrifying to me. Granted, we do have a large house, we have two very large main hospital systems here, that span I believe each of the two systems has at least four emergency rooms and two major hospitals. There's plenty of resources around and if you were visiting the area and you good old er near me, it's not going to take you to that little rinky dink one that scares me, it's going to take you either to my hospital or our neighboring Hospital, which will can provide excellent care. It's astounding.

Scott Benner 1:11:25
I would like to remind people at the end here that you are a human being with all the fragility and that comes with that and so is the person you're going and asking them to help you those people are our people, you're a person, you have limitations, they have limitations, the best thing you can do is know as much about your situation as possible. Advocate for yourself till the very end. Never give in. Don't be mean always push. And at the same time. Remember, you're just asking another person. It's not like Mimi's not a magic fairy. She's a girl wanted to make a little more money. So she became an RN. And then she moved across the country to make $6 more an hour. And she just wants to go home with her dog and not sit on her sofa and be bored. Yeah, and have some grass to run in just like you. Exactly. She's not a wizard, you're not going to a wizard and telling them that you you know, Please grant my wish for me. I'd like to feel better now. So anyway, whatever. I'm sure people are gonna hate me by the time this is over. But I appreciate you doing this very much. Thank you very much.

'Mimi' 1:12:29
Yeah, and honestly, note there like the rinky dink Costco I'm talking about that is not an attack towards their staff at all. It's just like a lack of resources, lack of exposure to a lot of stuff. Like they can be very competent nurses and doctors, but they don't have the exposure to what other nurses and doctors have or the resources to adequately treat these patients. So like, they're not bad providers. They're just in a bad situation. And

Scott Benner 1:12:56
but and once you get there, you're in that situation right along with them. Yeah, yeah. Okay. I appreciate this. Did you enjoy being called Mimi?

'Mimi' 1:13:03
Yeah, I do enjoy being called Me. Me. Alright. Well, if I remember grandma go by

Scott Benner 1:13:08
Mimi. Well, you know, first we gotta get you out of that apartment with just you and that dog. Alright, that's not gonna happen. Yeah.

'Mimi' 1:13:15
Alright, thank you so much. Yeah, absolutely. It was good talking to you. You too.

Scott Benner 1:13:26
Arden has been getting her diabetes supplies from us med for three years. You can as well, US med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all the sponsors. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL. You see ag o n.com. Forward slash juicebox. A diabetes diagnosis comes with a lot of new terminology. And that's why I've created the defining diabetes series. These are short episodes where Jenny Smith and I go over all of the terms that you're going to hear living with diabetes, and some of them that you might not hear every day, from the very simple Bolus up to feed on the floor. Don't know the difference between hypo and hyper will explain it to you. These are short episodes. They are not boring. They're fun, and they're informative. It's not just us reading to you out of the dictionary. We take the time to chat about all of these different words. Maybe you don't know what a coup small respiration is. You will when you're done. Ever heard of a Glice See make index and load haven't doesn't matter. You'll know after you listen to the defining diabetes series. Now, how do you find it, you go to juicebox podcast.com up top to the menu and click on defining diabetes, you'll be able to listen right there in your browser. Or you'll see the full list of the episodes and be able to go into an audio app like Apple podcasts or Spotify and listen to them at your pace. Download them into your phone, and listen when you can. The defining diabetes series is made up of 51 short episodes that will fast forward your knowledge of diabetes terminology. Thank you so much for listening. I'll be back soon with another episode of cold wind. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1145 Parenting: Transition of Care

Scott and Erika talk about how to transfer type 1 management to a child.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 1145 of the Juicebox Podcast.

Erica Forsythe is back today Eric and I are going to kind of button up the parenting series with an episode about transitioning care. So we're talking about going from you being the one making all the decisions to handing that off to your child. While you're listening today. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. We're becoming bold with insulin. If you're interested in learning more about Erica, she's at Erica forsyth.com. How would you like to help people living with type one diabetes and maybe help yourself? T one D exchange.org/juice. box, fill out the survey completely become part of the registry. And just like that, you've helped T one D exchange.org/juice. box now they're looking for US residents who have type one diabetes or are the caregivers of someone with type one. They're looking for everybody, but have a real focus right now on men, men of color, and of course, parents of boys. If you fit the bill, which is pretty much everybody, please reach out T one D exchange.org/juice. Box. completing the survey helps type one diabetes research helps the podcast and it will help you one day two T one D exchange.org/juice box. It takes about 10 minutes and they won't ask you one thing you don't know the answer to this episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod. Learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juice box. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. When you use my link and place your first order, you're gonna get a welcome kit, a year supply of vitamin D and five free travel packs. This is the transition of care handoff episode for the parenting series. Right? Yes. Okay. Do you think this is going to be the last one? Or do you think we're going to add anything else to this?

Erika Forsyth, MFT, LMFT 2:23
I think we could probably add more as we think of more ideas or we hear feedback or some more ideas.

Scott Benner 2:31
Let's call this the last one for now. Yes.

Erika Forsyth, MFT, LMFT 2:35
That sounds good.

Scott Benner 2:37
I get stuck too many times making series and I come out they make these definitive like this is the last one. And then like three weeks later, I'm like here's another one. I apologize. I didn't realize. So anyway, what would you like to talk about today? Okay. Well,

Erika Forsyth, MFT, LMFT 2:52
we're going to continue our conversation of we started in our last episode, overcoming parenting challenges. And we thought there would it would be significant enough to have this episode focused on the transition of care, and have the handoff, so to speak, and talk through some ideas and tips and suggestions. So

Scott Benner 3:16
are you telling me that in your mind transition of care, that handoff is a parenting challenge, but it's so meaty that it didn't we couldn't give it a little bit of space, and that other one it needed is an entire episode of its own?

Erika Forsyth, MFT, LMFT 3:29
That's what I'm saying, Scott. Okay.

Scott Benner 3:33
Well, I agree. So let's get going. You want to read through your ideas? Or do you want me to ask you questions? How would you like to? Well, I

Erika Forsyth, MFT, LMFT 3:40
thought, as I was thinking about this episode, I was I had that vision of a relay race of you know, for runners, but thinking about the first runner to the second runner handing off the baton. And in this analogy, it works. In some ways, it doesn't work in other ways. There is a start line diagnosis, the finish line, we don't have a finish line yet. But I think in this analogy, maybe thinking about this is the finish line everyone both parent and child feeling competent, competent in the management. And in this, when you think about if you've watched a relay race, there is a period of time in which the runner can hand the baton off to the next runner. There's like a there's there's markers. Yes. And also, this analogy doesn't really work because there are no rules right around when this baton when that line in real life should be passed on to your child. But let's just pretend in this scenario, every runner and every team does it differently like that once they pass that first marker line. A runner might hand the baton off immediately to the second runner. Some runners will hold the baton a little bit longer between the first and second runner and then some handed off right before that. Last kind of a marker where you can pass the baton off. And so I think it's important to hold that kind of image as we talk about this, because every family is different when they are handing that baton off every personality of the child and the parent is going to be different, different comfort levels. But we all all families will go through this transition time. Yeah.

Scott Benner 5:22
Do you think that, generally speaking, parents want to do this? Or do you think it's the thing that they eventually realized that they have to do? Or I guess maybe there are a lot of different personality types. In my heart, I've seen, I've seen my wife not want it to end. Like she doesn't want this leg of the race to be done. You know what I mean? And I am in the middle, I'm upset and saddened by it, when when there's a passing of the baton. But at the same time, I see the bigger picture, not that my wife doesn't see the bigger picture. I think it's just emotionally harder for her. But I wonder if there are some people who just don't want that separation? And if there are some people who want it too soon. And I hate to talk like that, but I do. I do sometimes see people that seem like they didn't really jive with parenting. You know what I mean?

Erika Forsyth, MFT, LMFT 6:15
Yes, I think I've seen and heard and read all different types of be their parents are, as you're saying, maybe wanting it too soon. But maybe that's because the child is really demonstrating independence. But I also hear a lot of parents talk about the guilt, like if your child is diagnosed younger, you are managing it as the caregiver. But then some parents feel guilty that they know eventually, it will need to be passed on to their child. So I think it really comes with as we talked about it so many different layers of emotions. Yeah,

Scott Benner 6:52
because it runs that gamut from, you know, basically saying, You're old enough do it yourself, which I've heard said at ages that it seemed, seems too young to me. And then there are some people like you said, who were just there, they are really helicoptering and they're not letting go. And And where does that happen? So it's much more about, it's the balance, right? It's the balance of your comfort and their ability. Does that make sense? Yes. Okay. I think the caveat here, that makes this difficult is the expectation for outcome. So if you don't know how I can explain this, then I'm gonna get out of your way and let you talk. But But what I, what I see happen so often with people with type one, especially for parents, for kids, is that they don't know all the time the successes that they could be having, right, they might get started with a doctor who tells them, Oh, your eight is a great a one, C, and then they get stuck there. And they don't think of it or they you know, they they cling to that. If it goes to 300 and comes back down, it's fine. Like that kind of stuff. Now, suddenly, that kind of management is what they think is normal. And they're not putting that much effort into it. Because nobody's given them any tools. And they figure the kid can do this. Like it does count these cards up, push the buttons, they get high, they come down, they get low, they drink juice, if they're low, that's the end of it, they're not actually focused on quality health, probably because nobody's told them how to accomplish it. So I bring this up, because I've had so many conversations with people in their mid 20s. Later 20s on up, that will tell me stories about like, oh, you know, I was 13. So I was old enough. And, you know, when I was 18, when I was diagnosed, so I was an adult, like, I don't know, like, that's a lot for a younger person to do. And the parents sometimes unknowingly even are just like, well, here, you're doing a good job at it, you're pushing the button when you're supposed to, and they don't even look at the outcome and then that kids off on a on the wrong path. Anyway, I've seen a lot of that. That's what always pops in my mind. First, when we talk about transition.

Erika Forsyth, MFT, LMFT 9:01
How the management starts, has an effect on the transition, obviously, yeah. And I think it's also important to note too, when you are newly diagnosed, I know we're talking about transition of care. I think the one of the things I was going to mention later on, but I can say it now is that a 12 year old, who's diagnosed as a 12 year old may act and look and function very differently in their management versus a 12 year old who was diagnosed at age two, and, and might be just thriving and managing independently because they've got 10 years under their belt.

Scott Benner 9:38
They've got more time in the simulator, right? Yes, they're doing Yes.

Erika Forsyth, MFT, LMFT 9:42
And in the beginning. Yes, you might go out of the gates with, you know, either not the right education or not really knowing having the tools, and you're overwhelmed with all of the things and the grief and the processing. But there's also still hope for the parent to learn and read remembering as the parent who is then as you're transitioning the care that you had a period of time of grieving of learning. And as you hand that off to your child, they might be going through that too. Even if you're like, 10 years into

Scott Benner 10:13
it. Yeah, I was just gonna say it doesn't matter. Maybe if you're at this for a long time, you've still been there helping or maybe doing all of it or most of it, now, suddenly, you're giving it to them, it's a new burden for them. Mm

Erika Forsyth, MFT, LMFT 10:25
hmm. Yes, to expect that, that they might have that an emotional response to it, even if they if even if you feel like they are ready. Sure.

Scott Benner 10:35
Oh, no. And they could they could be ready and still have that response? 100% Yeah, no, for sure. Wow, this is a lot, honestly. So like, go ahead, let's go through what you have here on our notes, and we'll pick through a little bit. In 2015, I needed support to start making this podcast and Omni pod was there. They bought my first ad, in a year when the entire podcast got as many downloads as it probably got today. Um, the pod was there to support the show. And they have been every year for nine seasons. I want to thank them very much. And I want to ask you to check them out at Omni pod.com/juicebox. There, you'll find out all about Omni pod five and Omni pod dash, you'll figure out why a tubeless insulin pump is probably right for you. And there are links to get started. Everything's right there at Omni pod.com/juice box. My daughter has been wearing an omni pod tubeless insulin pump since she was four years old, and she's about to turn 20. It has been a friend to us. And I believe it would be a friend to you, Omni pod.com/juice box. And of course, taking care of your health isn't always easy, but it should at least be simple. That's why for the last three years, I've been drinking ag one every day, no exceptions. It's just one scoop mixed in water once a day every day, and it makes me feel energized and focused. That's because each serving of ag one delivers my daily dose of vitamins, minerals, pre and probiotics and more. It's a powerful, healthy habit that's also powerfully simple. Before I was taking he wanted to get that brain fog in the middle of the day, and I just couldn't seem to get on top of it. But now that doesn't happen anymore. By starting my day with ag one I found focus and a renewed ability to perform at my highest level all day long. Drink ag one.com/juice box when you use that link, you're supporting the production of the Juicebox Podcast. I drink age you want in the morning, but you could use it as a coffee replacement before workout or in your smoothie. If there's one product I had to recommend to elevate your health, it's a G one. And that's why I've partnered with them for so long. So if you want to take ownership of your health, start with ag one try ag one and get a free one year supply of vitamin d3 k two and five free ag one travel packs with your first purchase exclusively at drink a G one.com/juice. Box. That's drink ag one.com/juice box, check it

Erika Forsyth, MFT, LMFT 13:09
out. Okay. Yes, emphasizing just like your parenting style, just like we've talked about attachment. We've talked about so many different things that it's really important as you're entering this stage of wondering should I should my child be taking on more? Is my child ready? Am I ready to focus in on your family? I think we it's really easy, particularly you know, when you're online comparing. And so seeing your peers, your caregiver peers, you yourself as a type one looking around saying, Well, gosh, my friend can do it. Why can I or as a caregiver, wow, that that kid is doing it. So just being really in tune with. Every family is different, and that's okay. And there's no hard and fast rule about when this should all happen. I think there are there are certain human you think about like milestones of your child like when should they learn how to brush their teeth on their own? When should they learn how to dress like there are some normal developmental milestones that your child should be hitting. This one, we often think about, like teenage years getting ready for you know, in high school going off to college is usually about the time. But again, your eight year old might be managing perfectly. So

Scott Benner 14:29
there's little things that I've done along the way. You know, Arden's 19. Now she's almost 20. But little little things like I talk out loud when I'm doing diabetes stuff with a younger person. Hey, you're about to eat. Now. That plate looks like wow, you know what I think I think the role is 25. And let's not forget there's some protein in that burger. So let's just throw in a couple more there and then these fries and there's fat in the fries, you're gonna get higher later. So I'm going to put this in here and then a little later I'm going to do that or I'm going to do a square wave Bolus or an extendable Whatever you call it, something like that, I'm gonna tell the algorithm, you know, whatever, whatever your management style is. So she hears it over and over and over again, Arden counts carbs, exactly like I do, we have never spoken about it directly. Like we look at a plate, she's always a couple carbs heavier than I am even. And so we're right in line. But that's just because I just would voice it. I wouldn't tell her. Here, watch how I'm doing this. It was never instructional it was just happening in front of her so that she'd pick it up as time went on. Same thing with filming stuff and changing things, I would just talk her through it like, Oh, we're gonna take this off now, because this is peeling on the corner. And so that one day, she'll seal peeling on the corner, and she'll think, oh, that shouldn't do that. Like, you know, I just think that's the way to go. But as to the age, I guess I'll save till the end how I did it. But it's tough to put a parent in charge of a decision like that, because like you said, you are knowingly given the kids something to do for the rest of their life, I've had that thought on my own, like, Oh, when I pass the baton completely. It's on her, like, I'm done, almost, you know, and that feels terrible. Like, I don't want that for her, it's different than go pay your rent, or buy your own damn cell phone like that, you know, like something like that. It's much different than that. And it can stop you. But I also know that there are some parenting styles that will allow that to completely slow down the process, if not grind it to a halt. And there are some parenting styles that will say like, you know, throw them out of the nest here and see if they can fly. I always said to my wife when she's defending our kids too much. I always go. Are you their attorney?

Erika Forsyth, MFT, LMFT 16:43
Oh, I bet she really likes that. She's

Scott Benner 16:45
thrilled with that one. Yeah. So oh, she loves it when I say that. But there are times where I'm like, You're defending them? You're not thinking about them? And that's, you know, I don't know. Anyway, keep going. Sorry.

Erika Forsyth, MFT, LMFT 16:59
Yes, it's the question is, you know, when I think it's we're trying to kind of define, but it's, you can't really define it, you know, when does this transition happen? Yeah. And I think it's partially yet maybe starting with age and stage and comfort of management. But also, I think, if you're like waiting for this moment of like, okay, I think my kid can do it now. That there might not be this, you know, aha moments. And so starting slowly, like you're you were demonstrating, you know, verbalizing what you're doing. They might be asking, you know, some kids, and a lot of, you know, teams I work with, they want more of that independence and freedom, freedom, really in autonomy with their life in general, because that's their developmental stage. But and then they want that in their diabetes. So as you're hearing your child ask, and or kind of wondering, maybe they should start to have more independence in their, in their management, checking in, okay, why, why am I resisting this as a caregiver? Am I fearful of relinquishing control? Is there grief in that process? Like you said, there's like a sadness. And that's all really normal to say, Oh, this is really hard. I need to grieve this.

Scott Benner 18:16
I also think it's possible that grief comes out in different ways. It's not as easy as they look sad. It could be rebellion in little ways, like just not doing it. Forgetting putting it off, yelling about it a little bit. I'm just going over the things that I've seen from Martin over the

Erika Forsyth, MFT, LMFT 18:34
years. Yes, yes. You know,

Scott Benner 18:37
I think you would listen to this podcast and think, Oh, this is amazing. That guy's daughter's got an agency and the high fives and I think right now, it might be again, I think it's five nine right now. And it's not a lot of effort. And you know, they know what they're doing, etc. But that's hard fought, like getting to that point. Took a lot of a lot of time. And it wasn't, it wasn't because Arden was like this simple kid who just loved it, like she's been on a couple of times. So I think people recognize that she's not that kid who's like, Oh, my God, daddy diabetes, I'll do it. That's not where she came from. Like, and I know, you're talking about that, that specific, like style of art, the way kids brains work, maybe. But I've also heard from adults who will say I was precocious as a child, and I was like, Let me have it. And they're like, I didn't really know what I was doing. But as soon as I said, Let me have it. My mom disconnected. That gets sent to me a lot. Like they just shut off. And there I've also heard from people who asked for the control from their parents, but not because they thought they were ready for it, but because they did not want to be involved with their parents about it. Yes, and that's a hard I mean, as you're sitting there, listen to this. This is a hard pill to swallow. Like, you know what I mean? Yes, imagine, you know, I'm sitting here I'm thinking what if my kid was like, I do not want to be involved with you. And so

Erika Forsyth, MFT, LMFT 19:56
they want to they want to cut off completely and do They're on thing. And that would include, you know, can can mom or dad follow me on the follow?

Scott Benner 20:08
That's a non starter for me. Yeah. Anybody who wants help Going to college is is, is getting fouled on their Dexcom that there's a simple rule for me. That's how I get paid back. What happens though Erica, though, when the kid wants the autonomy, but they really, they don't really want to do it, they just want to shut you out. I mean, you grew up with diabetes in a different time, right? You forge some diabetes logs in your in your day? Yes. So what happens when they say I got it, I got it, I got it. But on the other side, the agency is up and up and up.

Erika Forsyth, MFT, LMFT 20:38
I think that's going back to okay, if if your child is saying I want to manage this, I want to be more independent. I think if you are if you have that parent child relationship, to say, Okay, we are going to do this on a trial period, you have to earn it, like you have to earn the right to stay out later for curfew, you have to earn the right to drive or whatever other you know, stipulations you have to earn that trust, they have to you have to give them the opportunity to to earn it and then they have to prove it and continue that cycle.

Scott Benner 21:15
I find some of the hardest blending here comes because what we're talking about is not apples to apples, and you say like, Hey, listen, if you want to drive, you have to take the safety course first. Right? Right. But because diabetes is a safety issue, it's a safety issue. It's a health issue, but then it's also a personal issue. And it's an autonomy issue. And it's things you're not even thinking about which we've covered in some episodes. But you know, what's the most outlandish example I can think of, oh, if you're the child, if your child is young right now, and has type one diabetes, you're not thinking about the day that their blood sugar goes up when they're masturbating, and you come knocking on their door, and they're like, Get away from me like, like, there's that is going to happen like that. There are so many, like, human things that are going on with all of us. But now you're monitoring them. I don't think any human in history of humans has felt good being monitored. And so you're right. It's not it's not a human trait to just go Yeah, sure. subjugate me, because that's what it's gonna feel like, though, as they start getting older and older. So what the hell do you do? I

Erika Forsyth, MFT, LMFT 22:26
was even I noticed that, like, it's such an interesting thought around being a teen now being followed. Multiple people know your blood sugar at all times. Some people use lifescan, 360, or live 360. Where are you? All right. You know, where you are. As a parent, you know, your child is all the time you're being constantly monitored. That raises anxiety levels, I imagine most of the time for one or the other. Do

Scott Benner 22:54
you think people are really stalking their kids? I know, I can find my kids phones, but I don't. I did. Once when Cole moved away the first time first job, I, oh, my God, I want on his first day of work. He was driving through Atlanta to go to work. And I knew he was leaving. And it got in my head. I wonder if he's on time. And I opened up my phone, and I could see that he was driving. And then I got very melancholy and watched him drive. I've watched the little stupid icon drive the entire route through Atlanta. Alright, I'm sorry. Oh, God, I hope he never hears that.

Erika Forsyth, MFT, LMFT 23:32
But does he did he make it on time?

Scott Benner 23:34
I don't remember that part. I just remember thinking like, like, if the car keeps moving, he's alive. Like is how it felt? You know what I mean? And so, and I don't know why I feel like he's a great driver, who's 23. Anyway, but do you think some people are always looking? I guess they are right. And then the kid knows that. Because you know, people say, like, I saw you went here and look at my phone, and then then you're feeling judged about every decision you make that impacts your blood sugar. Got it?

Erika Forsyth, MFT, LMFT 24:04
Yeah. And while all of this data and technology increases, support, you know, safety and hopefully reduces long term complications and the risks of lows. I'm talking about the follow up, but also even the follow up, you know, find my and live 360 Those are all great things, but I think as caregivers that just will raise anxiety and and as a teen I think having these types of conversations to have an understanding of like, okay, can you if you are going to follow my app and if that is a non negotiable if you're going to follow me on on the decks or whatever other CGM. Can we not talk about it constantly. I think I'm sorry, we're kind of going back and forth here. But as like the if the child is wanting that independence, and you're saying okay, let's do a trial period of Okay, so you're but I'm still going to follow you. It's your then maybe the freedom in that 24 hour period is you aren't saying okay, your your rising 50 points, correct? Correct. Correct. Or you're going low. I mean, obviously, there's, maybe you have a, an emergency, if you're going to such and such a number to arrow down, we're gonna do something. But everything else,

Scott Benner 25:22
you gotta have to let go a little bit, just like, Oh, yeah. So I've learned to do that. Over the years where if Arden's blood sugar gets above where I think it should be where I know, like, I'm looking at them, like, we could fix this in two seconds. But she's in class, and she's not thinking about it right now. Like, what's the last thing in the world she wants is a text from me that says, hey, you bump your blood sugar down a little bit. I do save it for moments when I think it's a big deal. You know, safety moments are one thing, but I also think of high blood sugars as safety as well. You know, if a couple of hours go by, and she's one, I don't want people laughing at me. If she's like, 150, or 160, like for a couple of hours, Arcus like, Oh, my God, oh, my god. I'll say to her, Hey, like, you know, is that algorithm suggesting any insulin? Because give it, you know, and, and we've come to a place, it's okay. Now, like, I don't say too much. And she accepts it when I say it. Like, it's the I think I've demonstrated the value of my words, by having an economy of them, if that makes sense. Yes, yeah. And I

Erika Forsyth, MFT, LMFT 26:34
think before going back to the initial stages of your child is wanting to be independent. And I think going back to your question of, is your child wanting to be independent? Because they don't want to be in a relationship with you? I mean, I think that's that can happen for a lot of teenagers for a season? Or are they wanting to take care of their diabetes by themselves? Because they feel like they can? I honestly don't know if that really matters in the beginning. Because they're wanting that independence. Yeah. And to say, okay, here are the boundaries, let's give it a try for six hours, 20, whatever, whatever our amount that you both agree on, and then have that okay, when can I, as a parent, suggest, you know, we have the safety boundaries or safety protocols? And where are you comfortable with? And maybe 24 hours? You guys agreed to do nothing? I don't I don't know. It depends on what you want. I think it's important to listen to your team in those initial requests. I'm saying team, but it could be younger. Anybody? Yeah. Yeah, Arden

Scott Benner 27:38
and I have a shorthand, where if she just ignores something completely, or she really screws, the pooch, somehow, then all of our niceties go out the window. And she's accepting of that, too. Like, I will sometimes be like, you know, so I'll see that her schedule has her in class all night, right. And I can see her pump has kind of 15 units left at it. And I look and I go, she's going to try to get out, go through class and come out of class. Without changing the pump. She's gonna want to do it afterwards, right? And I'll say, maybe, hey, listen, I think you might save yourself a lot of trouble here by changing your pump in the afternoon. And then she doesn't do it. And then the night comes along, and I'm now seeing there's a unit left in the pump. I'm like, Hey, now's the time, we're gonna go change the pump, like no more, I'm going to try to make it I'm going to do like, it's over now. Like, you're not going to be without insulin, like like now. And then she'll go hard, or I'll do it. Or like, the other day, I sent her a text and I said, I need just to change your insulin sensitivity. By one point, make it one point weaker overnight, because you're getting these little lows overnight, and I think this is gonna fix it. I mean, she's using Iaps right now. But I just wanted to just adjust the tiniest bit. So the next night when I was woken up in the middle of the night and had to text her. I was like, she didn't make that change. But it didn't say anything, then because it was three o'clock in the morning. And that would have been ridiculous. And I waited till the next night, which was last night. And we were actually sitting and talking about something else. She was showing me something she was working on. And at the end, I said, Hey, how did it go change in your insulin sensitivity the other day? And she goes, it went great. Then she smiled, and I went, you didn't do it, right? Just I did not. And I was like, Okay, I said, Well, can you do it now for me, please? Just while I'm just getting ready to jump out, I'm going over this lab and I'm gonna do some drawing with somebody. And I was like, That's great change in sensitivity. That's it because it was like late night, Friday night, and I was like, it's going to your thing's going to switch to 11pm and then I'm going to be up at 3am If you don't make this change, and she's like, okay, okay, okay. I'll do it. And I wouldn't do it now. And she's, I can't I'm rushing out send me a text and I went, come on Arden and she goes if you text me I'll do it. I was like Okay, so I sent her a text now, we'll wait another night and see what happens. And then I'll ask her if she did it again. And that might throw a lot of people be like, Oh my God, that's so much like just turn the dial kid. But that's me trying to do what you're talking about. Let her be your own person. Not forced things in though I mean, she's not like, she her blood sugar is not 20 overnight, like, it's like dipping under 70, you know, and I'm like trying to make a little adjustment to it. I honestly think that most of what we're talking about is alleviated, or at least made much easier. If you go to the Pro Tip series and learn how to use insulin. I know that that might be sounds like me trying to get people to listen to the podcast, but I 100% think that if you are making decisions that are ending the way you expect, then it's a lot easier to say to the kid like, hey, go ahead, give it a shot. I know that, you know, one plus one equals two, like we're good. I think a lot of the concern comes when people don't know what they're doing. And they're like, oh, I don't know what, you know, the kids high all the time. They're low all the time. They you know, that kind of stuff is scary and dangerous. And isn't that the place where you have to put your foot down no matter? What, if they're high? I mean, yeah, I mean, if we're like just ignoring thing, like, you know, if a day turns into a week, turns into a month turns into a year. And the next thing you know, you look up into kids, a one says 10. And they're going I can do it? They can't. Right. So what do you do there?

Erika Forsyth, MFT, LMFT 31:27
I know, that happens that that situation is out there. And I know, it's so, so heartbreaking and painful. And so you know, as a caregiver, you experienced such a sense of powerlessness, and also really grief because your child is demanding. You've Allah and you've given and they're now they're 20, and they're don't know how to manage, I would then attribute that to a bigger issue, right? Is the child is that now your child is an adult or whatever age? Obviously having an emotional response, a lot of feeling with the diabetes, it's not. And I would also look at, you know, how are they functioning and other areas of their life? Are they thriving in every area? And they just aren't don't really know how to manage their diabetes? Or are they really struggling across the board I would be looking at is there a lot of baby depression, anger, trauma around having the diabetes that maybe hasn't really been properly addressed? And so it just feels easier in the moment to ignore it.

Scott Benner 32:34
I think my my quandary is, I'm a tough love person, like, generally speaking. But if tough love means you're going to, like lose your eyesight when you're 35. Then what do I do? Like, do you mean like the sink or swim comes to mind, but it's such a, it's not like, it's not like I said, go to college, and you said, I want to work at McDonald's. And I was like, sink or swim. Like, you know what it means like, you'll still you'll have a job, you'll be working in McDonald's, and you'll probably buy, there's jobs pay pretty great at this point, you're probably doing fantastic. But, but this is a different thing. Like in my mind. You know, if you don't, I have to say this, the harder decisions that I've made about transitioning ordens diabetes over the years, have always been fueled in the back of my head by the idea that I really only have like, till she's 22 to get it accomplished. Right? Like I can hold on 1819 20. Like, you know, like, I'm paying for college, like pay attention. Like, you know what I mean? Like that kind of stuff. But after that she's gone. Or whatever I gave her and whatever she decides to do is the only thing she's going to do. I mean, I've seen adults, adults who are parents of children with diabetes, and their kids have gotten older, and their kids cut them off from knowing about their blood sugar's and it's heart wrenching to them, because they assume that they're not okay. Because if they were okay, they would tell me they were. So they're not. That's why we're not talking about it. And then you worry for the rest of your life. Eric, I don't want to worry for the rest of my life. I just want a couple more years left. Just want to relax. It's a bigger that it's a bigger problem. It's not it's very much unlike all the other parenting issues that come up with children. And it's why you see so much hand wringing about it online. And And isn't it fascinating how it hits people right away? Like if their kids are two years old? They're already worried about it. Yes, yeah.

Erika Forsyth, MFT, LMFT 34:35
Thinking Yes. About the independence about their next stages of life, adulthood, you know, children. Yeah, it's I know, it's easy and painful to go there. And you mentioned worry, are you going to worry the rest of your life and, you know, I haven't personally launched my own children. But I think as going through that, those stages myself I think there's a sense of knowing that your parents trust you. They've done what they've could. And they are watching you. And that's that. And it's, it's hard.

Scott Benner 35:13
I think for the great many of us, this is what's going to happen, and it's going to be okay. I really do believe that I genuinely think for most people, it's going to be okay. But there are plenty of people listening right now. They're like, look, my kid is a mess, you know, and they have diabetes, and they show no interest in it whatsoever. And I don't see how that's going to change. Those people are in a they, gosh, it almost makes you feel like they have a child that they're never going to completely be able to separate. Yes.

Erika Forsyth, MFT, LMFT 35:41
And I know that that can happen. And there's often you know, this sense of, is it too late to help my teen child adult child take responsibility. And, you know, I don't want to say sometimes maybe it is at some point too late. And then they as adults, they are going to have to figure out how to accept, grieve, accept, manage independently. And I don't know, there isn't like an exact timeframe. But I know that that that can happen. And that's a really, really challenging place to be as a parent,

Scott Benner 36:15
through a lot of our conversations. I'm always struck by the kind of core idea that it seems like it's impossible to make somebody care about something they don't care about. Yes. It just really just seems like there's no amount of teaching or trying or showing, that can just change someone off of something that they don't find important. It's one of those like human things, that eats, like inside of my chest, I think about it all the time. Like, you know, because of kind of what I do for a living honestly, like, there are plenty of people who will say things to me, like, I don't learn well by listening. And I'm like, so why I'm like, like, you're telling me that, like, it's hard for you to listen to a podcast, I understand that some people don't learn well, by listening. But you're also saying, on the other hand, my agency is nine, and I'm really in trouble. And I want to do something. And I've heard that you have this thing that helps people and I go Yeah, listen to these 25 episodes, I think you'll be okay. Oh, I have trouble listening to things. Well, okay. And then I try another way to explain to him like, well, I have transcripts, it's a lot of reading, I'm like, No, okay. You know, like, like, in that same way with kids, like, you can tell them something 1000 times, and if it's not something that they jive with, it's not something they jive with, but then it's this thing, and then what's coming next is really coming, you're not going to avoid it, that's for sure. You can't wish it away, you can't put your head down. And at the same time, as I'm being a bummer, I really do want to say I think for the grand majority of you, it's probably going to be okay. You know, if someone came into your office and had a kid who just like was a wall didn't care wasn't doing anything. Would you think that something like that I let pump would be a good midway point like, hey, look, this pump just, you know, it's only going to keep your agency in the sevens, but all you have to do is tell it it's breakfast, lunch or dinner? Small, medium or big? That would be a good idea in that situation, don't

Erika Forsyth, MFT, LMFT 38:16
you think? Yes, yeah. Yes. If, you know, obviously, if the if that child is open to having the pump on them, but I think that would be a wonderful alternative than either, you know, not injecting or not, you know, giving the carbs or whatever it is, I think that's a really nice option for people to really minimize, or just reduce the amount of decision making an action you have to do. Yeah, yeah, I think that's a I haven't read a ton. But I know I hearing more and more people start to use the pump that I love pump,

Scott Benner 38:50
I mean, I let pump is they're saying in the sevens, I'm saying, if you're going to ignore your diabetes, you're going to be in the nines and 10s 1112 13. Like, I mean, just take the seven and don't know what you're like, there's got to be a point I'm not saying the eyelets give up. But in a situation like that, you know, stop thinking you're gonna get down the sixes or the fives and just go with healthy and, you know, and, and happy to, you know, at some point, it's not, it's not your life to live. Obviously, it's a hard thing to say, right? It's not your life to live. But the thing that I would always be concerned about is, is the child decision making process being impacted by these lower higher or vacillating blood sugars? Like maybe you're not really talking to all of them? You know what I mean? If their blood sugars are bouncing all over the place too.

Erika Forsyth, MFT, LMFT 39:41
And yes, like how can they be in a grounded place to say, okay, isn't ready to take it on or I don't want to take it on if they aren't feeling good, physically, and emotionally.

Scott Benner 39:54
Okay, is it fair to say that having a really high blood sugar for a long time can make you feel foggy? Yes. right is that is it akin maybe to being up for like 20 hours straight and being exhausted, but trying to keep going or something like that like, is that when you'd ask your kid about a thing? Like, do you know they mean like, right? But if their blood sugars are high all day, and you're like, You got to take care of this on your own, you're not getting the full capacity of their brain back, you know? And even bouncing blood sugars. I don't know, if everybody realizes that going low and high and low and high over and over again, we have a whole episode about it. I think it's called altered mind about how vacillating lower or higher blood sugars change your ability to think and perceive things. So 100%?

Erika Forsyth, MFT, LMFT 40:36
And it's yeah, it's super fatiguing. You feel very lethargic,

Scott Benner 40:41
I guess my point is, is that I really do think if you understand diabetes, even a little bit, and you've got some stability, most of your kids like Eric has been saying through this whole thing, there's going to be a certain time for them. And you'll see it right, you'll you'll hold that baton out. And you'll feel well, it's time to let go. And just make sure you're not the one who's screwing up the transfer.

Erika Forsyth, MFT, LMFT 41:04
Or holding on too tight. If they're ready. Yeah, because it

Scott Benner 41:06
falls on the ground, everybody kicks it, and then somebody falls in those little shorts. And it's very painful.

Erika Forsyth, MFT, LMFT 41:12
Yes, and I think in that if you are fearful of letting go as the parent, you know, is and you truly feel like you're you have, you know you're competent in the management, your child is learning and understanding it, but you just can't quite let go. And that happens, right? Because you're fearful. And there's you want to protect your child? And does this feel like you're not protecting your child by letting go of the baton? I think going back to basic reality checking up, okay, we have the app when he knows how to correct he has his snacks, all the people know around him, like really doing the basic reality checking of because the fear is, you know, I don't want my kid to go low and have a seizure die. And I don't want him to have long term complications, right? Those are I mean, that's what we're talking about when when we're when we're boiling it down. Yeah, that's what we're talking about, right. And so really, and having to remind yourself, write it down, pin it up on your mirror, but if it's the, you know, when it's the child who's not wanting to hold on, or wanting to rip it out of your hands, I think just going back to this is like these are logistics, these are management styles and tools. And I think having the understanding, knowing how to do it is really significant and important in this process. But also reminding yourself, there's so many emotions involved. And is it a matter of acceptance, has your child not truly accepted it? Here, that's okay. Give them that give them the skills, the tools, the support to do that, in addition to the logistical management,

Scott Benner 42:47
right. And I'll just say if you happen to be a person who is just disconnected from this, and, you know, I don't think anybody would probably admit this out loud. But if in the back of your head, you're thinking, I can't wait for this to be over. And for this to get off of me and beyond somebody else, at least do them the favor of teaching them how to take care of themselves well, before you before you do that. And I even understand that I'm not judging anybody. But you know, if it's too much for you, as the parent, offloading it, and hoping they figure it out, I mean, you couldn't figure it out, right? So what are the odds, take them somewhere to a doctor, let them listen to podcasts, like do something like try to get them to a better place, don't just set them out on their own, and say, I don't know, walk West, you'll find it, you know, because that's, that's not gonna work out. You're also this conversation is reminding me that Arden has been back at college for a week now. And I have to send her the text that says, Please refill your vitamins. And if you haven't been taking your vitamins, please start taking your vitamins. I only asked her to take like two. And I'm like, just take these two vitamins. She's like, I will, I will. But the last time she came home with her little vitamin thing. And I she was unpacking and we were helping her on pack and I was like, This is how I left it when I left it with you last time. And she's like, I didn't take those. So I was like, oh, Arden so and she's 20 in easy to get along with. So 1920 years old, she's easy to get along with. And those vitamins sit right next to her bed. They're staring at her. I think it's an act of will not I think it's probably more work not to take the vitamins than it would be to just take them. But I do wonder if sometimes if that's not a little bit of trying to find control, it's something don't you think?

Erika Forsyth, MFT, LMFT 44:39
Having control or just feeling maybe also loaded down with everything else and just like I can't I can't open the container and pop the pills because it just is one more thing and I get to choose. But yeah, having that sense of like power control of what I can and can't do and that's that's normal and And maybe, if that's the one thing she's choosing not to do, maybe that's, that's okay. But I know you want her to take, you're like, No, she needs to take vitamin

Scott Benner 45:10
D to be high enough. That's all. Vitamin D, little bit of magnesium oxide. That's all I'm looking for it not a ton of facts. I'll tell you right now, what you're making me think of. If you have sent one of those kids off into the world, that's not doing a good job for themselves. And they're partnered up with somebody, I don't know that that's a terrible way to attack this, which is maybe go to the partner and say, hey, look, this is none of my business, they're going to be definitely pissed if they know I came to you about this, but there's some certain things they're supposed to be doing. And, you know, if you can find a way to learn about it a little bit, and just over, you know, just look over their shoulder once in a while and see if this is happening, you're going to be helping them. I know, that's probably not a good thing to bring up like, psychologically, but it popped in my head. Because the only thing that I've ever seen change a person is the desire to do it for somebody else or some other thing. That's the only thing that I have consistently seen work in humans. Right? I'll do it. I won't do it for me. I'll do it for an unborn baby. I'll do it for the idea that we're going to get pregnant. I will do it because I looked over at my kid one day and realized, oh, hell, that kid needs me to pay for stuff for the next 20 years. I'll bring my a onesie down. Like that's the only time I see it. I talked to so many adult type ones. I just started using a pump last year. I'm like, why? Just last year? Oh, you know, my daughter was diagnosed, she got on a pump. And she didn't want to get on it. So I did it too. So she would be and I'm like going, how's it going for you? Oh, I should have done it years ago. You know, like, so? Those are two things I know for sure about people, it's you can't make somebody do something they don't want to do. And the only thing I've seen change people's minds is the desire to do something for another person. Love is actually the thing that I that I would say if I had to narrow down to one thing. Yes,

Erika Forsyth, MFT, LMFT 46:59
change is hard. And finding the motivation to change is even harder. And it may be it is just that sense of love for somebody else. To make the changes for yourself to be there for them. Yeah, it is.

Scott Benner 47:15
existentially does that mean that I don't love myself enough to do it? Is that what Freud would say? Yes,

Erika Forsyth, MFT, LMFT 47:21
but yeah, yes. Yeah.

Scott Benner 47:25
But does that even is that true? of everybody? Like do people? Is my daughter not taking your vitamins? Cuz she doesn't love herself enough? No. Yeah. So

Erika Forsyth, MFT, LMFT 47:36
I think it would be hard. I wouldn't make that like as a tried and true statement. I think there's so many there's so many layers to why, like, why am I not taking care of myself or my diabetes? Is it because I don't love myself? Or maybe it's just because I hate the diabetes, but I love everything else about myself. You're

Scott Benner 47:55
punishing the thing. And it's interesting. It's all very interesting. Anyway, did we cover everything? I you put a nice note in here about something that I've said in the past, and we never got to it. So what about the college? Yeah, you know, about the laying breadcrumbs? I said that in front of you one time and you loved it enough to write it down? You did? Yeah. Is it just because I said I leave bread crumbs for art and defined? Yes. Yeah, like ideas of, you know, I just I say things out loud. And I'm like, Cool. She follows that along. I'll drop it off on later and try to keep her going. But yeah, your point about college, we didn't get to it though. Let's

Erika Forsyth, MFT, LMFT 48:32
just say it's not an ideal situation, and your child is wanting to independence, they're going off to college. They're still figuring out how to manage to have maybe one non negotiable around the management piece that their roommate, the floor resident are a person. Anyone else that's kind of in a consistent circle, have your child that they know that that your child has type one they know where the glucagon is for emergency, right? Because your child can do everything independently except for if they're unconscious. Right. I think that's a really important non negotiable for this is like for the child who's leaving, obviously the house for college. Even that might be challenging, right to get to an understanding and agreement to but the hope is that you know, you you want your child to live. Yeah, survive. Arden

Scott Benner 49:25
was very amenable to that. Two of her three roommates follow her on Dexcom they only have the 55 alarm set. So the earth the urgent alarm is the only alarm it's at Arden does not reach 55 with any, you know, reasonable, you know, on any reasonable schedule. So that's there is an emergency. And have we talked about the glucagon fire drills they do? No, I must have talked about it another episode. Oh my gosh. So they do fire drills where they make art and pretend to be having a seizure, and then they run around and get her Chivo type of pen and stuff like that. And they go through the steps of everything before they do it. They are laughing about it while they're doing it to be clear, yeah, these four girls, that was it. So they are just like in that was the girls idea. Like the one day the girls came in, and like we need to, like, tell us this again. Like what is this? You know, because we talked about it like the first try to imagine the first day they moved into college. We took all the girls out to dinner. And we were like, look, you know, a couple of things about art. And she's explained to you. And you know, here's the key imagine you're 18 you're probably like, oh, what I'm just trying to get drunk, like this girl, this girl bite what? And so like, you know, we explained it all to them. They were very nice about it. And then Arden said a couple of weeks later, one of them came in said we should practice with this. And then they were laughing. They were laughing. And they were like lay down and shake, and we'll do the rest. And so like they actually now they do that for fun. turned into a play thing. But I've also talked to people whose kids are in college. We're like, I'm not telling anybody about this. And I agree with you. Like one person needs to understand this. That's it. And also, I need to know how to call your roommates. That was the thing we did. So I have like, Arden's roommates are in my phone. And you know, it's happened, I guess twice now once where I actually couldn't wake her up. And she was pretty low. And one of the girls went and got her and gave her juice and she was fine. And there was once where I, I moved a little too quickly. And then I heard about the next day.

Erika Forsyth, MFT, LMFT 51:40
Like you reached out to the roommate.

Scott Benner 51:41
Yeah. And I heard about from Martin. She's like that was not necessary. And I was like, you want to try being 700 miles away when your blood sugar's 52 with an hour down because it felt necessary to me and you didn't answer your phone. She's like, I was handling it. I was like you didn't answer the text. So they got the call. And you know, now she's better about it. She She's more responsive now. And I think again, maybe to protect her friends. More than ourselves. Maybe you know, maybe. Yeah, interesting stuff. Oh, anyway, yes. Good luck, everybody. Good. Yeah. It makes me

Erika Forsyth, MFT, LMFT 52:12
wonder how did I survive college? I don't know. Well, you

Scott Benner 52:16
know, were you thinking about your mom when you were talking about this? Because your mom raised two kids with type one. Right? So I wonder what she did? We did not have any of this Dexcom we did not have follow find anything? Yeah. I don't know that find your iPhone is my best tip for people who have iPhones. If your kids don't respond, you can send a find your iPhone signal that is piercing on the other? Eye? Yes, I've

Erika Forsyth, MFT, LMFT 52:46
heard that. Yeah, I've

Scott Benner 52:47
done that a couple of times over the years. Did we miss anything? Are we? Are we good? No, I

Erika Forsyth, MFT, LMFT 52:52
think you know, as we as we always hear the like cliche, from upon diagnosis. And then in this transitional period, it is trial and error. But I think we often will be here that we still think like we should nail it and have no mistakes, no growth pains. But like it is trial and error. So they're expect errors. Yeah. And I know that there's like maybe that's not the right term, but in this phrase, you know, expect that there's going to be painful bumps, your child is not going to get it perfectly all the time, just like you didn't as the caregiver learning initially,

Scott Benner 53:31
you absolutely have to step back and see big picture on this one. This is a slow transition really slow. You know, Erica, you might imagine that throughout the years of me doing this, one of the most aggressive questions I've gotten from adult type ones who listened to me talk about this are like, Yeah, you're sure but then your daughter doesn't know how to do this. And I'm like, No, she's learning slowly. And then I would tell them the same story over and over again, I was like, you know, you send your kids off to school on day one, and they come home and they don't know how to add. There's no day where like a bell goes off, and they know how to add it just gets to the end of the year. And they're like, Hey, turn to us for like, oh, it happened along the way somewhere. Alright, so you just keep having those experiences. Like you're you're calling them trial and error, but their experiences, they go one way or the other. You'll learn from them eventually, and you move on. It's why I tell people not to beat themselves up. I would say never spend the time beating yourself up about a decision when you could spend that same time learning from it. That just makes sense to me. We already went through it. We already screwed it up. Let's figure out what we did. So we don't do it again. Like instead of you know, seriously, like whipping ourselves in the background here about it. Like let's just let's just look at it. See, see what it was keep moving. A lot of it's keep moving and then one day you just look up and you know, it works and you don't even know how the hell you got there. So that's life basically. Yes, there you go. Yes, I just fixed your whole life or keep going keep trying I think it'll be fine. And if it's not, I don't know what to tell you

Erika Forsyth, MFT, LMFT 55:07
lost the lottery, I don't know, be kind to yourself.

Scott Benner 55:10
See, Eric is still as good advice at the end of it. If it doesn't go your way. Be kind to yourself. It's, you know, I'll finish by saying that when Arden was diagnosed, I almost immediately had the thought that this is not the life, I thought I was going to live. I was just somebody just shifted me drastically out of the lane, I was in into another lane. And it takes you a long while before you realize there is nothing you can do to get out of this lane. diabetes is here. Now. That's it, it's not going anywhere. My kids got type one diabetes, this is where I live, you can be happy in that lane, and fulfilled. And more more than that, like you can do everything you were going to do in the other lane, you can do in this one, too. You just have diabetes, and this stuff comes along with it. It doesn't change the rest of it at all, unless you let it. And I don't usually talk like that. But I do think that's true. Like if you if you can get good management ideas, learn the tools, use them reasonably well. With the exception of some bumps once in a while. You're gonna live the same life you thought you were going to, but it just doesn't feel like it when it first happens is all.

Erika Forsyth, MFT, LMFT 56:23
Yes. And I think you even said in a previous episode, you know, no one delivers a child and expects them to be diagnosed with something or have a hardship. Yeah. And so there is that you know, from from the lane that you had envisioned for your child to moving over to the lane that you envisioned with your child with diabetes. That takes time that can be painful. Yeah, just switch those just switch lanes. And I appreciated that. Yeah,

Scott Benner 56:55
I appreciate you remembering that everybody gets something like you know, I see a lot of perfectly healthy kids on tick tock, flip it over railings and landing on poles two storeys down, I think, oh, not a health concern in the world. Just stupid about that. too, just because your kid doesn't have diabetes. You know, because you can look at that sometimes you can look at other people in the world and say, yeah, they're so lucky. They don't know. But you you don't know, either. Right. Like they might have something else going on. Or just, you know, I don't know. I just think everybody gets something. That's sort of how it seems to me.

Erika Forsyth, MFT, LMFT 57:30
Yes, but you don't live with that necessarily that expectation No, no, be maybe you're right.

Scott Benner 57:36
Oh, no, I really thought I was going to be six, three way about 180 pounds, ever perpetual tan be very handsome. You know, everything I wanted. Money would fall out of the sky on me stuff like that. None of that's happened. I appreciate you doing this with me very much. Yes.

Erika Forsyth, MFT, LMFT 57:53
You're welcome. Thank you. I'll see you next time. Okay, bye bye.

Scott Benner 58:07
If you're living with type one diabetes, and you think therapy might be right for you, Erica Forsythe may be able to help check her out at Erica forsyth.com. I'd like to thank ag one for sponsoring this episode of The Juicebox Podcast and remind you that with your first order, you're going to get a free welcome kit. Five free travel packs in a year supply of vitamin D. That's at AG one.com/juice box. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. The afterdark series from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From smoking weed to drinking with type one perspectives from both male and females about having sex with diabetes. We talk about depression, self harm, eating disorders, mental illness, heroin addiction, use of psychedelics, living with bipolar, being a child of divorce, and honestly so much more. I can't list them all, but you can by going to juicebox podcast.com. Going to the top and clicking on after dark. There you'll see episode 807 called one thing after another episode 825 California sober. Other after dark episodes include unsupported survivor's guilt, space musician, dead frogs, these titles will make you say what is this about? And then when you listen, you'll think that was crazy. juicebox podcast.com Find the after dark series. It's fantastic. When you support the Juicebox Podcast by clicking on the advertisers links you are helped means to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases. If you are a loved one has been diagnosed with type one diabetes. The bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series, Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. This series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bowl beginning series today and get started on your journey. Episode 698 defines the bowl beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies in Episode 715 We talked about fear of insulin in 719 the 1515 rule episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility in Episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears hope and expectations. In episode 763 of the bold beginning series. We talk about community 772 journaling 776 technology and medical supplies. Episode Seven at treating low blood glucose episode 784 dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out. It will change your life. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1144 It's Never Sarcoidosis

Jonathan is a 30 year T1D who recently had his colon removed.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1144 of the Juicebox Podcast.

Today, I'll be speaking with Jonathan who has quite a story. He's had type one diabetes for 30 years and he's had recently his colon removed. There's a lot to this story that you're going to be interested in. So get comfortable, and we'll get going. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. And I have a unique opportunity for you to help people living with diabetes, go to T one D exchange.org. Forward slash juicebox and fill out the registry survey. Just complete the survey and you will be helping people with type one diabetes, you might also be helping yourself. They're specifically looking for men right now to jump over there and take a look if you're the mother of a child who happens to be male that counts just the same T one D exchange.org/juicebox. US residents only. This episode of The Juicebox Podcast is sponsored by cozy earth.com Cozy Earth is where I get my clothing, linens and towels from they are incredibly comfortable and temperate. I love them. I really do love them. And I love that I can give you an offer code that will save you 40% off of your entire order. Just use the offer code juice box at checkout and you will save 40% at cosy earth.com us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well, US med.com/juice box or call it 888-721-1514. Use the link or the number get your free benefits. Check it get started today with us med.

Jonathan 2:34
I'm Jonathan. I'm a type one diabetic, where an ostomy is so I do not have a colon. And I started a nonprofit to help folks with chronic illnesses get outside safely and have some fun.

Scott Benner 2:48
Wait, hold on. Kathy. I don't know if you broke up. But Jonathan lives in a place where there's like four cows and a bird. So what you have a wide.

Jonathan 2:58
So I have I had my colon removed last June of

Scott Benner 3:03
22. For fun. Do that for Yeah, I

Jonathan 3:07
decided, you know, I love mountain biking. And I love eating and I wasn't losing enough weight. So I figured you know, I may as well just start taking vital organs out just to try to get in shape

Scott Benner 3:19
called a colectomy. Is that right? Yeah, well, exactly. Okay. So

Jonathan 3:24
I've been a type one diabetic for 30 years and just turned 4041 And I had been sick off and on for the better part of a decade. And what I mean by that is obviously just running to the bathroom. So I would I love running I love like I said mountain biking, cycling anything to get outside and get active. And so I noticed more and more I was running to the bathroom, you know it go two weeks where I'd be running three or four times a day. And I'd go to the doctor and they'd say, ha, you're you're stressed you're too high strung relax, you know, take it easy. And that progressed over the years to the height of going about 30 times a day. Oh, yeah, it was no life. I still managed somehow to to run sort of in between porta potties and it got to the point where Yeah, I just I didn't have a life I was incredibly sick ended up in the hospital actually was shingles. That was where things really went downhill. I ended up somehow with with with shingles, which then led to a diagnosis of sarcoidosis. sarcoidosis is rare,

Scott Benner 4:37
right Jonathan? That's the one that's the one they use on house when they don't know what else is happening. Did you really have 100%

Jonathan 4:45
I wanted I first of all, and I'll fast forward a little bit. All I want is a T shirt right? I want to undiagnosable t shirt or or something from Mayo Clinic that just shows like I'm part of a cool club that you know I'm I'm Dr. Houses undiagnosable

Scott Benner 5:01
I can quit making this podcast now.

Jonathan 5:04
I think you're good.

Scott Benner 5:06
I mean, I didn't know this was gonna happen. Actually, Jonathan, I swear to you, I feel terrible about this. I was so excited when you say.

Jonathan 5:17
So, I'm, I wish I was making this up. But I'm in. I'm, again, I'm jumping around here. But it all makes sense in the end, right? Sure. I'm in the emergency room. As I'm sick, they don't know what's going on. I've got shingles on my face. The doctors are convinced that I'm cheating on my wife, that I have an STD, which I don't really know much about STDs. But I was questioning how it all show up there. Long story. And when the sarcoidosis, diagnosis comes back, the doctor is literally holding a book, hearing around the book to look at me and then back to the book. And then back to me, and then back to the book. And he said, I've never seen anybody with sarcoid. I've only read about it.

Scott Benner 6:02
No kidding. Let's take a picture.

Jonathan 6:04
Right? I'm sitting right here. So can we talk about like, what do we do? Now?

Scott Benner 6:08
Let me let me ask you some questions, because I've already too many questions. Yeah, you're diagnosed that 11 with type one. Do you have any other autoimmune issues?

Jonathan 6:16
It depends on you know, it's the whole gluten thing. They go back and forth on interpreting that. So I've never officially been diagnosed on that front, but I do tend to avoid it. Just you know, again, stomach stuff, but no, no. Type One was was

Scott Benner 6:32
just about it. How about in your family? Any other type one? Autoimmune. Yeah. So

Jonathan 6:36
my my cousin, my mom's on my mom's side. He was diagnosed. Geez, maybe two, I want to say maybe even younger, maybe one. And then my, my nephew a couple years ago, my brother's son. So that that was rough. Obviously my cousin I wasn't, I was older. And he he felt bad for me. But my nephew being diagnosed that was that was a tough one that that hit me pretty hard for a while.

Scott Benner 7:03
So you go from 11 to wind, when does the bathroom thing happen? And I have questions about that, too. Like what age do you start finding yourself? Early? Early 20s are about 10 years. diabetes? Yeah, exactly. All right. When you talk about running to the bathroom, I'm so sorry. I'm gonna ask you this. But no, please. Open Book. You get it and you get in there. And yeah, it lasts for two seconds, five hours. How long have you there every time you sit down. So I would,

Jonathan 7:36
I would meet a friend. For a run every every Friday morning. This kind of summarizes my day, every Friday morning at six o'clock. Doesn't matter what the weather is you you're on the corner to run. And so I would wake up usually around four and use the bathroom until about 10 minutes before I would meet him. And it would just be a constant stream of water coming out of my my body. Okay,

Scott Benner 8:01
okay. So and

Jonathan 8:03
then after I got back, sometimes I need that. So that was a usually about an hour run. Right? So then at times I would have to stop during that and go about halfway or I'd get home and I would immediately Dart to the bathroom. Go again trying to get ready for work. Get to work go again. I mean, so it's any involve

Scott Benner 8:22
tell me something you wake up at four. And you're this is happening is a delusion liquid coming out. When was the last time you ate prior to that?

Jonathan 8:34
It would usually be gosh, you know, eight, nine o'clock the night before,

Scott Benner 8:39
okay, and now you're out for your run, but you get done. You have to go again. You weren't eating? What were you doing during the run? Just drinking or eating?

Jonathan 8:46
Nothing, nothing. And it just happened for you. And that's the thing. The only way I've always described it to people as being like a wrung out sponge. It just you felt dehydrated and tired all the time. It just felt like how there's just there's nothing left in my body. Yeah. How is this possible to continue doing

Scott Benner 9:08
minerals hydration, nutrition all that stuff must your body can't be picking it up quickly enough when it's coming out that fast I would have met

Jonathan 9:16
no and and the the kind of doctor houses of the world I was getting I've continued to gain weight, which they can't, they still don't grasp. Like why? Usually people in this condition we see our skin and bones and you're not you're just retaining this inflammation and that's where they started going was hanging on you. Your body is just so inflamed. Something else is going on that we don't quite understand.

Scott Benner 9:41
I used to hate ordering my daughter's diabetes supplies. I never had a good experience and it was frustrating. But it hasn't been that way for a while actually for about three years now. Because that's how long we've been using us med us med.com/juicebox or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7. They accepted Medicare nationwide and over 800 private insurers. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juicebox Or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do. This episode of The Juicebox Podcast is sponsored by cozy Earth. And right now I'm looking at cozy earth.com to see what's going on. I got oh look at this bamboo pajama set for ladies. That jogger pants for ladies looks like plush lounge socks. That's one of Oprah's Favorite Things. There's the bath collection. We love the waffle towels, but there's also premium plush bath towels. Everything that you see here can be had for 40% off with the offer code juice box at checkout. Even the sheets, now we use the bamboo sheets, you may choose different linens, I don't know what you're going to love when you get to cozy earth.com. But we sleep on bamboo sheets from cozy Earth, they are incredibly comfortable. And I bought them myself with my own money. Using my own offer code. juice box at checkout 40% off is what I saved, you can as well at cozy earth.com. Okay, and so this was happening throughout the day, this is how long do you go to the doctor?

Jonathan 12:11
Very quickly, you know, I did not want that I knew something was wrong. And yet, so I had my first colonoscopy when I was 26. And again, it will go in, in in in spouts.

Scott Benner 12:27
I'm gonna say spark. So you stopped yourself, right?

Jonathan 12:29
I did, I did. So yeah, it would be two weeks of this, right? It would be three, whatever the case may be four days, and it will go away. And I go to the doctor. So they did a colonoscopy, everything looks fine, but maybe just stay away from gluten stay away from dairy, you know, make I have tried every single you name FODMAP diet, I've, you know, only eat beans, I did that, you know, jump up and down three times on a full moon did that. And it just continued getting progressively worse to where, you know, two weeks turned into a month turned into three months. And that's where finally I was referred to Mayo Clinic.

Scott Benner 13:12
Okay. Once somebody said we have literally no idea what's happening here.

Jonathan 13:16
So exactly with this, this doesn't make any any sense whatsoever,

Scott Benner 13:20
then what happens there that leads to because I'm trying to understand, because I don't understand this at all. How does having your colon removed? How is that helpful for this?

Jonathan 13:32
And how do you get the it's a great question and still in one that's hard to, to answer, especially as my family still has that question. And it doesn't, it doesn't fix sarcoid it doesn't stop anything other than running to the bathroom 30 times a day. So I leading up to you know, when we first met with mayo, the doctor was incredible. And said, I'm going to be very upfront with you. This is the trajectory right? So we're going to start with these sorts of experimental ideas that we have in our research. And then we're going to go to more traditional potentially infusion treatments. And then worst case scenario, which I hope isn't there is surgery. That's where the most extreme cases go. And we went through two years of experiments and infusion treatments. So I was going to a cancer infusion center every so often for several hours for an infusion, in hopes to slow that, you know, my immune system just going haywire. And so it got to the point where none of that was helping. None of it was adding up. So we did every test imaginable at Mayo and so they went in and did the final colonoscopy to take a look and they said you your colon is just so inflamed and so angry with not only colitis, lymphocytic colitis, but also granulomas, we can see we've tested it and you have sarcoid through about your colon, which is incredibly rare. So not only do I have this rare condition, but now I have another rare element on top of

Scott Benner 15:07
it. A lot of times they say that sarcoidosis could last for years and go away or it could exactly work could end in organ damage. So what So, is that you just set a timer in your head and go, I can't do this anymore?

Jonathan 15:22
Yes. 100% You're right. Okay, that's exactly what I did. It was impacting every aspect of my life, from family to you know, career to everything to I mean, the top thing for me was family and, and outdoors. Like I was carrying a shovel and biodegradable toilet paper, which I still do isn't my bag, but I carry it. I was carrying it on on runs in the woods, quite literally runs. And so many were, you know, bad puns.

Scott Benner 16:00
Don't worry, you you keep going. So you're, you're like out there like a cat burning your stuff?

Jonathan 16:06
Digging cattles? Yeah, I just couldn't I knew from a mental health perspective, if I wasn't moving in some fashion, that that would be more detrimental than than what sarcoid was doing to me. So I had to get out

Scott Benner 16:20
there. So then my next question, and I really don't know the answer to this. But once you have that surgery, what are the where does it go?

Jonathan 16:29
Yeah, so I had, as you mentioned, in the collective me, so I had my entire it's a I want to say 16, you got to be incredibly wrong on that. But it was it was a lot, it was a nine plus hour surgery. And they attached so they essentially took a piece of my small intestine and pulled that out through a hole in my stomach that they created just bottom of my stomach to the right of my belly button, as I'm facing it, and connected, an ostomy bag. So essentially, there's a piece of plastic, just like a pump site, really adhesive that goes around this little piece of intestine, which then you connect I, you can have a one piece bag or a two piece bag. But I have two pieces. So I have a piece of adhesive on my stomach. And then I have a bag that adheres to that. That he said that kind of locks on it. And anything that I eat then goes right into this bag.

Scott Benner 17:24
Okay, so it makes it it makes it to your stomach for digestion and for nutrition and all that stuff.

Jonathan 17:30
Yeah, and I it's it's not really you know, people oh my gosh, you poop in a bag it it's not. It's like I always say it's like half digested food because your small intestine only does so much. So it's not quite like what you think of like, Oh, he's got he's carrying around poop in his bag.

Scott Benner 17:48
I didn't think of that. But now that you're saying it, I'm imagining it. So yeah,

Jonathan 17:52
of course. You know, the the, I've found that the stereotype is that people that that have this medical bag, if you will, it's dirty. smells terrible. You're pooping into a bag. And it's there are some truth to it. But but for the most part, it's not as gross as the internet makes it out to be.

Scott Benner 18:18
You don't get any more of that like wash of just liquid running through you. That doesn't happen now.

Jonathan 18:23
Oh, no. So I did they removed not only obviously, my my colon, they removed my rectum because my rectum was was diseased as well. And so essentially, I they built like a small little not really a pouch, but they just just a small I don't know little space. And so that shut so they removed everything. And there's there's no connection. i It's a dead end because I like to joke in my kids.

Scott Benner 18:54
Wait, hold on a second. I can't take your temperature rectally. That's good question. Is there an entrance?

Jonathan 19:03
I don't know. I've got an entrance. Okay, it just doesn't go anywhere.

Scott Benner 19:08
Gotcha. It just was almost like a like, if you were transitioning the way they might create like a vagina. Like that. Like it's just there's like a space back there. But it ends. Yeah, yeah.

Jonathan 19:21
Okay, very quickly. So I Okay, I got it. Yeah, I always joke that I've got a no outlet or a dead end. Yeah. How

Scott Benner 19:27
about that? That's, that's Dude, that's insane. It really is. It's,

Jonathan 19:32
it's wild. I mean, it's, it's been over a year now. But I still have times where I wake up and I'm like, Holy, Holy, Holy crap. You know, this is the reality. I'm 41 years old and Blaine, you're staring at the airbag that I will have for the rest of my life. And yeah, there's certain times of sort of heaviness that goes along with that, but at the same time, it's afforded me a lot. It's still ahead Got a lot of work, but it's afforded me a lot of freedoms.

Scott Benner 20:02
Can you remove it for short periods? Or does it always have to be on.

Jonathan 20:06
So you know, you can completely so you have to do a bag change. And this is where the parallels to diabetes are there because every, every person is different. So you can't really go and get the playbook. So I changed my bag, usually about every two days. I know some folks that change it every week, they're able to keep the adhesive in the bag, sort of in good condition, I'm able to take a shower, and I take the bag off before the shower, clean, you know, clean myself off clean, the stoma, which is the piece of the small intestine that's kind of sticking out of my stomach and kind of wash that up and then put a new adhesive on put a new bag and, and ready to go.

Scott Benner 20:48
Yeah, see, I meant sexy time. But that was the good explanation for that. So like, can it come off for short periods of time for activities?

Jonathan 20:56
That's so sexy time? If that's that's one element that frustrates me within maybe it's just because of what people are able to communicate on the internet, because I wanted to understand, like, how does it all work? And everyone says, Oh, you just wear a belt? I'm like, well, nothing says sexy, like bopping out of the bathroom with a massive medical

Scott Benner 21:17
belt. A bag around your stomach with the belt? Yeah, get the lighting, right, this is gonna work.

Jonathan 21:27
Stand back your gums? Me That's all. Yeah, right, totally. And so yeah, that's where it is frustrating from an insulin pump. Obviously, you take that off, no big deal, the bag is there. And so that took me a long time. And I still struggle with it. It's, it's there, it makes noise. your stoma may make noise because you've got you you ate. And I'm very fortunate because, you know, I've known my wife, you know, our whole lives. And it started dating, we were 19. So I just feel for people that are dating or may not have a partner or whatever the case may be and they're having to navigate them. And I don't think there's enough conversation going on about, you know, the bag moving around, while you're having sex, the just addressing that it usually just comes with oh, just put a belt on and you're fine. There's a lot of underwear, like crotchless underwear that are made for women. I've approached as many companies as I can find, like, Hey, would you be interested in making men's underwear? I believe I'm probably they see me as just internet creepo. Now in hindsight, I could see like some random person messaging Hey,

Scott Benner 22:42
beer, sir. But, madam, I was wondering that.

Jonathan 22:46
Right. So but I've, I've talked to other people that that do make make garments, and I'm trying to come up with an idea of it just something that's, you know, it just it gets annoying. It's there. But

Scott Benner 23:03
how many? Are there? Is there data on how many people have had this done? Not

Jonathan 23:08
reliable data that I've seen. So I've it's different doctors saying and I don't know this is accurate, but they say about 1.8% of people with sarcoid end up with it in their colon?

Scott Benner 23:23
Okay. That's a very Yeah, just I mean, that's gotta be a small number of a small number, I would imagine,

Jonathan 23:28
truly, and my presentation of it is bizarre. And that's why, you know, to your point earlier about house I mean that it is it's, it's a disease of exclusion, and it's one that is not understood and mind showed up on my arms. Usually, if it's gonna show up in your skin, usually see it on your, what I've been told anyway on your shins, and I had large granulomas showing up, up and down my arms. And that's what led to the diagnosis. That's how they tested it and then finding it within my colon. It didn't go into my lungs right away, which is, again, bizarre to the doctors. I have scar tissue in my heart. So they believe while they didn't catch it, during the test that at some point, I had granulomas in my heart. And now it appears early signs are showing my liver as well. So it's continues to perplex a lot of people.

Scott Benner 24:27
What are the long term implications of that? Yeah, as

Jonathan 24:30
you as you as you talked about earlier, you know, the hope is that it goes away, I just restarted immune suppressant treatment. So we're hoping that that keeps it at bay. It's going to take about three months for the immune suppressant to work because we have to start with the the cheap stuff that insurance will cover your humera as of the world I feel like that's a very a lot of people have heard of humera so that is one that is an option. But you got to start with this one because as you You can appreciate insurance. Yeah. And they don't know. You know, it's, it's difficult for me in a sense, because yeah, you there's some medical professionals that say, Hey, you know, you had your colon removed bad luck, whatever the case may be, we think you're gonna be fine. That's good. Then you talk to another doctor that says, I don't like the fact that your, that your liver levels are doing what they're doing. I don't like the fact that we're starting to see the stark granulomas form there. And I think you have to have an understanding that we can only take so many organs out. And I have had a very difficult my, my body builds up immunities rather quickly to immune suppressant drugs, treatments, so humera, again, you name it. And that were I have an allergic reaction to them. So they said, you know, you do you kind of do the math on this, you're not responding to drugs, and this weird presentation keeps attacking different. And that's my word attacking keeps going into different organs. So that that gives me

Scott Benner 25:58
pause. Yeah, no, I mean, I'm reading now, while we're talking. It's fascinating, too, that you don't have other autoimmune diseases, but you have this one. So in case people are wondering, sarcoidosis is an autoimmune disease. Correct? Yeah. And there, there's like, the things I'm reading here, say, like looking, this could be something that goes away to something that just, like hits different internal organs. And, you know, it could kill you at some point, like, so like, there's any, like any version of like severity here. I mean, it's gotta be frustrating to say the very least, it

Jonathan 26:35
tremendous. Yeah. And it's frustrating, because, much like diabetes. Again, there's just so there really are a lot of parallels. Oh, my, you know, my uncle, you know, he had sarcoid. And he was fine after two years are like, Oh, that's wonderful. That's fantastic. Mine, Mine isn't quite like that. Yeah, my lungs, for instance, as I said, as I've mentioned many, many times, I'm just avid outside. And now my Well, it is not sarcoid. And this is the next puzzle piece, based on my last visit to Mayo, the spring. My, I kept telling them, I'm not breathing, right. I'm not, you know, something is off with my body. I'm not responding the way that I'd like to. And I was told well, it's fine. It's just you know, you're still recovering from surgery. But oh, so then I finally pushed enough that they did some, some tests, and a biopsy, and it came back chronic inflammation. So again, it's like, it's not sarcoid per se yet, or maybe it was at one point, but it is your your lungs are chronically inflamed. And my question is why? And they just shake their head.

Scott Benner 27:40
Nobody knows. Yeah. Well, listen. So for people who didn't understand my reference earlier, if you didn't watch the show, house, MD when it was first run, it was about this doctor in Princeton, right? Who took on the toughest cases, like he was one of those people who helped you diagnose things that nobody else could diagnose it, it was a running joke, wasn't it? It was a joke, I think, from the writers that at some point, they would either get to, like, you know, halfway through the episode, when they're all wringing their hands, and they don't know what it is. Someone would say. Could it be sarcoidosis, or lupus. Lupus was the other one that they would go through. Yeah. And then, and then by the end of the episode, it was never sarcoidosis. More importantly, if you Google, it's never S A R, it will autofill sarcoidosis, and take you to just different web old websites from back when house was first run, where people are like, Why did they always say it's sorry? Right? Yes, a running joke on house like, like, you know, it would happen constantly. So anytime the word comes up on the podcast, and it has a couple of times, I explained this thing and make this joke. And no lie. Like three days ago, I was telling my wife how it had come up on the podcast recently. And when you said you had it, I was like, that's not possible. People don't actually get it. They just, it's then I realized the difference between reality and television. But it really like you floored me for a second. And this explanation is fascinating. Like, I never understood, obviously, the depth of this. It's really interesting to hear about I'm sorry, you're telling it from a first person perspective. Let me try to make sure I understand you started with kinda like humera kind of like level drugs. When that doesn't work, then they'll push for something harder. And that should help the the insurance company say yes to is that kind of the path you're on there. Exactly.

Jonathan 29:32
Yeah. Much. Yes. And and so we started with with the free so I mean, I was drinking two bottles of Pepto Bismol a day. That was Mayo had had research studies that had the effects of Pepto so I I'm just

Scott Benner 29:49
pounding on inflammation. Wait, what was the Pepto for Jonathan? The

Jonathan 29:54
they had researched with at this point. All they thought they were treating I was colitis, how I say I see for the colitis, okay, so they had no and that's the amazing part. And all of this is and how sneaky sarcoid is, is that they had no idea and it was nothing that they did. It was just it was there and no one knew it. And so they thought they were just, quote simply treating colitis, it was a lot of experimental like, Hey, we've seen promising x let's try to and you're exactly right. So then it's let's start with the easier drugs to obtain let's get up to the infusions and either built up antibodies to it or I had an anaphylactic reaction to one of them that was relatively scary. So we got to the point where you know that we're like you said, we're at a crossroads of how much is to like, where do we draw the line? And I finally drew the line and said, beyond this, I can't do it anymore. This is, this is too much. Yeah.

Scott Benner 30:54
Have you had any therapy or like mental health help with it?

Jonathan 30:59
Yeah, I'm not i I'm open and talking about you know, we've we've had as a as we've had quite the adventure when it comes to health and not only my diabetes, we, we have three kids, which we're fortunate to have in between our second and third, we had three children last 22 weeks. And so that sort of started my mental health journey of I didn't even realize I needed help at that point, because I was struggling so much to deal with the pregnancy losses. And when I asked for help from a doctor, I was told, suck it up, your job is to help your wife right now your job isn't to sit around and complain about losing a child. So I took that as okay, just suck it up and keep moving. So I was walking around with what I thought was just playing, you know, depression. And that's how it was treated for a very long time, until I found a counselor about three years before my surgery that found out I in fact, you know, diagnosed me with PTSD. And so it completely changed the treatment and the approach. Because everyone just kept saying, Oh, you're depressed, you're depressed, take these pills. And it was like, I don't want to just take the pills. I want to do some work around this. Yeah, I see. A counselor on a regular basis to try to manage all of this, as you can appreciate diabetes in itself is kind of a full time job. And then all this other, all these other elements really weigh on the mentally

Scott Benner 32:29
Sure. Yeah. No, I mean, I can't see how they wouldn't. Do your kids show any autoimmune issues? Not

Jonathan 32:36
Yeah, I was one of your guests a couple episodes ago talking about, you know, if their child does something, they they check their blood sugar. And when we do that, you know, if one of the kids is like, gosh, I've been drinking water all day, I'm like, get over here. Let me check you so far, so good on all autoimmune fronts. And that was a hang up I had with kids, right? Like, I struggled with the concept. And my wife, I think, put it really well, if we will cross that bridge. If we ever get to a hover, we'll know how to help, we'll know how you'll understand how to help them. And that gave her peace of mind. And she told me that regularly so I felt comfortable, you know, having the kids? Yeah.

Scott Benner 33:21
Okay, how does all of this impact diabetes care,

Jonathan 33:26
the inflammation has been difficult. The insulin resistance, as you can imagine, goes higher and higher, the more inflamed my body gets. So that's certainly been a challenge to find any patterns. With that said to me, I'm fortunate in that my one sees have, through a lot of hard work, have stayed in the mid sixes throughout all of it. But it's, it's interesting, because I see patterns were, you know, my output as we call it, not pooping in the bag, but my output if, if I am feeling somewhat dehydrated, or my output, you know, I'm putting out more into the bag on on a daily basis than usual. I can certainly see a reflection and blood sugar. But yet again, there's I feel like there's not many of us. So when when I collaborate with my doctors on it, they kind of asked me questions more than

Scott Benner 34:21
they're like me, they're like, this is really interesting. That great, thanks. Appreciate

Jonathan 34:25
it. Oh, I can't tell you how many research studies I'm in every time I go to Mayo. It's like Hello. Hi. Um,

Scott Benner 34:34
I have a grad student here that wants to talk to you.

Jonathan 34:36
Oh, absolutely. Oh, gosh. Like yes.

Scott Benner 34:40
I imagine. You know, Dr.

Jonathan 34:41
schmucky. Duck from from Denmark is here. Oh my God bring them

Scott Benner 34:47
How about your, your choices of food? Like, is there a certain way to eat that's more valuable for you than others? Yeah,

Jonathan 34:55
so after surgery, they they recommend real heavy starchy white rice. Have lots of peanut butter, which I'm good with anything that will thicken up that output because the biggest, one of the largest challenges that you have is, is dehydration. And once somebody with an ostomy gets dehydrated, because your your colon is really responsible for the bulk majority of absorbing foods, you know, moisture content, essentially, yeah, so once you take that away, then your your small intestine needs to pick it up, but it can only do so much. It's only really designed to do so much so. So once you get dehydrated, it's it's usually a trip to the emergency room to get night. That's kind of it can go bad pretty fast. Okay,

Scott Benner 35:37
what's it like a regular day like though? What do you eat the day and of course of a day.

Jonathan 35:42
So it took me a while I stayed on that post surgery meal. So it was, like I said, the rice, heavy stuff like that, removing the skin off your apples anything because what you're trying to avoid is getting a blockage. And if anyone's had an intestinal blockage, you know how much I mean it is excruciating. I have one thankfully in the hospital, because my gut still hadn't woken up yet. So they were able to treat with obviously heavy pain meds and a lot of IVs. And that's the only way to treat the blockage for us. So I was feeling that pain, I was really reluctant to branch out and buy food until one of the nurses at Mayo was phenomenal and kind of gave me a pep talk of like you need to get back into, you know, eating the way you want to eat. So unfortunately, due to the sarcoid right now, my mouth has incredible sores and inflammation all through. So eating is really challenging. But if an optimal day, you know, breakfast is usually some type of oatmeal or eggs, and bananas, some type of fruit, back to eating salad again, which I love. So a lot of fruit, a lot of vegetables, lean meats, try to limit red meat just because of it's just I've noticed, you know, for my output and how I feel it's just harder on my digestive system. Yeah. So you know, a lot of fish, brown rice, things of that nature. So I'm back to to where I want to be. But the nurse was cracking up because she kind of again, gave me the pep talk. And then I saw her the next day. And she asked what I did. And I was like I went out and I got a salad and an apple with the skin on it. And she's like, Oh, you rebel.

Scott Benner 37:29
I'm crazy. I'm crazy. Do you supplement with anything, any supplementation that they've asked you to use? You

Jonathan 37:37
know, so vitamin D and B are the only two from all the blood work that I give that they've had me supplementing wealth, and I've wanted to research and study other elements a bit more, but I just I haven't. So those are the only two that you know, outside of a general vitamin that I'm supplementing with.

Scott Benner 37:56
Are there any benefits? Are you saving crazy money not buying toilet paper? Or during COVID? When everybody was looking for a paper, you're like, I don't care? I'm good. Yeah,

Jonathan 38:05
totally. You know, so when I empty the bag, I use a little bit of toilet paper just to clean out the sort of the bottom of the bag. So the bag has an adhesive roll. And if you look it up online, you're able to see it so it locks in place. And there is absolutely no smell in the bag whatsoever when it's locked and closed. Now obviously when you open it and empty it depending on how long it's been since you've emptied it last there's there's a little bit of smell. But nothing. I find nothing horrible. But it's so yeah, I'll use a little toilet paper to clean that up. But yeah, with three kids, you know? Yeah, I'd like to say we've saved money, but probably not. 36

Scott Benner 38:47
minutes into this. I've sat on no pun, I've sat on this question as long as I can. Okay, really did mean, I think they're about by that point. I mean, so, do you have to like throw a Q tip in the butthole once in a while or rinse it out? Or something? Or oh,

Jonathan 39:05
that's a great, no, it's a great question because and then now with the I'm getting a little bit of it's a clear, I don't know how even how to describe it like a clear mucus that is present every now and again. And I'll have to wipe that and I can feel it like it just feels odd. And that's one thing that they they are studying a little bit just because I guess it can have mines happening more frequently. So they they recently went I was fortunate I was able to go locally to do it. They just went in with us, you know, a small camera just to take a look and figure out and they can see colitis all in the little surgical pouch. Really? Yes, super angry. Super inflamed. That's so Oh,

Scott Benner 39:49
I'm gonna curse that's crazy. So what's the pouch made out of?

Jonathan 39:54
So it's the remaining skin that was there and I'm sure there's the you know a surgeon listening right now. Alec's throwing themselves. You know, like that's not accurate. But as

Scott Benner 40:02
you get to say their opinion, so what? Why don't we replace it with like a real thick water balloon or something? I don't want to like, I obviously don't know a lot about health and medicine, but like, couldn't it be something? That's not your? You know what I'm saying? Like, because Oh, yeah, no,

Jonathan 40:20
the way it was explained to me is that it is the safest route to go to essentially. So you have two options. And that's the other part that totally messes with you, right is once you decide, okay, you know, what I'm going, we're going to do this, you meet with the surgical team, and they outline your options, which are one, what I did, which was complete removal, and no expectation of a reversal. And what a reversal is, is is a two part surgery, it's called a J pouch. So essentially, what they do is surgery one, they go in and remove your colon, colon, and then they give you a temporary ileostomy, they build a pouch out of your small intestine that essentially acts as your new colon. And that is able to hold waste. And just like your calling does just, it's obviously it's smaller, not designed to do that. So it's not quite as foolproof. So then you go back for a second surgery, and they remove the temporary ostomy and connect you fully. So they connect to the J pouch to your but you're good to go. Obviously, there's a little bit of recovery on a lot of recovery. It's a tough surgery. And then you're, you know, eating, drinking, living as you would you go to the bathroom, you sit on the toilet, it's a little softer. It's sometimes people have a difficult time with their muscular control. So you can have accidents with my diabetes, my recovery not great. We decided the first option was the best for us. Okay.

Scott Benner 41:57
I mean, listen, I it's not a well traveled road to begin with as far as like experience not like you can ask a ton of people what they think right? So you're totally, you're a little left with what the doctor tells you and what sounds the most agreeable to you, I would imagine.

Jonathan 42:13
Yeah, what fits your lifestyle within you know, there's there's certain people I've met that said, you know, the J pouch was was right for them. And thankfully, they've had no no issues, you know, the, you see a lot of they call it J pouch itis that gets infected or inflamed. And get again, just given my health history for us. It just didn't make sense to go through. The surgery was wicked. I have vague recollections of the week that I was in the hospital. But the ones that I do it was it was tough. And I remember laying there thinking like, is this, this is how I go out, like I was in so much pain, based on how my body was not reacting, right. My bow wasn't waking up, couldn't use the bathroom, I couldn't pay. So they were having to come in. And every time I had to pee and help me with that. So I was just, it was rough. And I was seriously thinking like, this is how I die like this is how I can't believe like this is it I was trying to do the surgery to help myself helped my family and this is how I go out and thankfully I got through that part and was able to excuse me able to

Scott Benner 43:25
recover and congratulations on that. Not using the term it kicked my sweetie describe the surgery. I thought that was because you had made a couple of bad puns so easily. I missed it. there and you just sort of left to go, but that's fine. I'll get another I'm trying to talk myself. Like out of like, I have to say something. So I don't keep thinking about it because I want to I want to say rectum. Like wrecked our W reck. Yeah. I'm looking for that on somewhere and I can't find my thought process while we were talking so far.

Jonathan 44:00
Well, I mean, we we had a two party a farewell poop party. My wife and kids got poop emoji balloons and put them all over the house. We I mean, we had neighbors big barbecue all to salute my colon. Goodbye. So we're, we're good with the humor. We need it.

Scott Benner 44:19
I do have a serious question. Like going to the bathroom takes up a fair amount of your life. Right, like sleeping. You know, like sometimes you'll resent having to sleep. I don't know if that happens to other people. Right? But just like I have things to do when things I'd like to experience. I wish I didn't have to sleep. Yeah, I know the rest of it must be so bad. It can't possibly balance it out. But is it kind of cool not to have to do it anymore. Is there anything good about it? Or would you wish you could just sit down and like, you know what I mean?

Jonathan 44:47
No, it's our her son. After we explained to him what was going to happen. He said that you can just play video games all day and never poof you can just never, like, not exist, how old

Scott Benner 45:03
is your son? I just want to rate where my thought process is. He's he's not. Okay. I'm 52. And it's what I wondered. So don't judge him or judge me. I don't know which way you're gonna go.

Jonathan 45:14
I thought I thought it was pricey. I cracked me up. No, I wouldn't. It was the right decision based on the information that we had at the time. And that's, that's a sort of a big thing, again, as you can appreciate with with management of a chronic illness is, you know, my wife, and I always just remind each other more. So she reminds me, which is we, we made the best decision we could with the information we have. And so after, I will say, after getting the pathology report, it felt better. Because I felt as though I was sort of making a selfish decision. The I was taking sort of a quote, easy way out by electing to have the surgery because it was I made the choice.

Scott Benner 46:02
And I gotta tell you, that does not strike me as the easy way out. But okay, yeah,

Jonathan 46:06
yeah, no, it was a weird, it was a strange time, mentally, and getting the pathology report and I read it. And I asked one of the other doctors said, based on what I'm reading here, my column was bad. And they said your colon was F. And it was a matter of time before you you had it done in an emergency setting. So you made the right choice. And that

Scott Benner 46:32
felt that's what you meant about once they were able to run that colon and look at the pathology of it. They were this was going bad one way or the other. You just kind of got out of it a little bit.

Jonathan 46:41
Exactly. And okay, once that doctor walked me through what a emergency removal looks like, like, Okay, this was a good

Scott Benner 46:51
Yeah, good. Okay. Okay, great. So how do you manage your diabetes? Use a pump a CGM? What do you do? Yeah,

Jonathan 46:57
I were, I saw I use Dexcom. And tandem, I love the data, I manage my blood sugar through Excel forever, because I had my own crazy way of sort of looking at trends and doing all sorts of stuff. So having now at my fingertips is sometimes a little overwhelming and pretty, pretty great. But yeah, that's what I use.

Scott Benner 47:18
Okay, using control IQ, or just manual. Yeah,

Jonathan 47:22
yeah, control IQ. So I was a long time that product and no offense to any of the Medtronic users or lovers or anything else, because I was one of them. After my surgery actually is and talking to my nephew, I wore Dexcom very early on, and some clinical trials just didn't work very well for me during activity, and I just never went back. And once I saw sort of what was happening, I talked now my endocrinologist is type one. That's when he uses and he kind of just let me figure it out on my own. But I think outside of exercise mode, that's the only issue that I have. With with on the tandem side. I think it's still too aggressive. I have to set a Temp Basal. But I think, for me, the control IQ has been the best. Are you?

Scott Benner 48:10
Are you not getting some impacts? Because your food is skipping that? That large intestine? Because there's some absorption happening now?

Jonathan 48:20
Oh, absolutely. Yeah, yes. 100%. Yeah, it's I don't know what the percentage is. But it is certainly been a new learning curve of how quickly food hits me. And I, I mean, you don't seem like you'd be offended by this. But there's times I won't tell my wife which foods because I don't want to ruin it for her. But I can tell how quickly I mean, if I see them, I can actually see the food in my bag. Certain foods, if I don't chew it well enough. Or if it's just a food that is difficult to digest. It's coming out of my bag. We don't

Scott Benner 48:53
talk enough around diabetes about like digestion, it's not spoken about, I think with the weight that it carries in the process, right? Like we all everything's just thought of from the side of the of the insulin like almost like everything else is invisible and unknowable. And you're just trying to combat carbs with insulin, when understanding how these things are absorbed by your body and how that continues to impact your blood sugar or how that slows down digestion. So you see a rise, I don't know, an hour and a half after you the French fry and you think What's that from? It's because the fries have been just sitting there not being digested. Now all the sudden, they're being absorbed and you're getting the impact from the carbs. Beyond the time you imagine that they would happen like it's nobody talks about it like that. I guess it feels random and unknowable, but it's really not. And I think digestion should be discussed more, at least to the level where people could understand, like that small part of the concept. I think it's important to have Actually, I'm making a presentation like on my other, like, I'm looking over to different computer right now, for a talk I'm giving next month. And I just added that recently to like, let me give a couple of minutes to this here to make sure people understand this part of it. No,

Jonathan 50:14
you're you're right. And it's, I think it's a, it's a frustration point for many people, which I can appreciate. But no, I completely agree with you from from a diabetes education perspective, it's kind of glossed over. And you can really, I think, fine tune. Now again, it's it's trying to find the patterns trying to understand if I eat peanut butter here and don't eat an apple or I do, like, what does that do? And I, I think if you're able to have the time and that science brain or sit down and figure it out, it certainly helps. But it is it's a ton of work. And now it's sort of sorry,

Scott Benner 50:53
I was just gonna say that, I think that at the very least, it can feel like someone comes up behind you and shoves you. And when you turn around, no one's there. So like, you know, at least understanding that you're not crazy, and the RBN shot from behind, you know, like, even that would just be helpful. Like, maybe you don't get to understand every impact of every bite of food and the different timelines, they're going to impact you on. But at least if you know what's going to happen, then when your blood sugar starts going up, it doesn't feel so random. At you know, like after, yes, that's all I'm saying,

Jonathan 51:28
you know, in in that you're not crazy, and that you and I realized that I came up at a different time. And I hope this isn't the case anymore. But it was always when I was a kid. It was like, What did you do wrong? Yeah, that was the mentality from the medical community, at least that I saw at the time, which was your blood sugar was actually like, oh, you cheating? What did you do wrong? And and I really started to value myself through my numbers. So you know, my blood sugar was high. It was because I was a crappy kid. Like, that's what I started to think, was that I was not it wasn't that I was 14 and growing. And, you know, it was that I, I screwed it up. And I think there's just so many unknowns there with diabetes, and how, like, I always tell people, it's like, you know, the sun could be in a different direction. You know, the heat could do something like, you know, I had a friend asked me, why don't you just do the same thing for each mountain bike ride? Like, Well, I do vary? I, I do. But I could have been stressed out. I may not have slept a lot last night, I might be, you know, I may have had an extra whatever the case may be cup of coffee, like it's the variables are there. So I think that's hard for some people to accept. I know it was for me at least.

Scott Benner 52:39
And again, I guess it just at least if you understood that that was happening, it wouldn't seem random. And then you wouldn't have people just, again, randomly assigning blame to things because they don't understand what's really happening. Like, let me just let me just know that somebody snuck up behind me and shoved me and I don't see that when I turn around. At least I'm at least I know I didn't do something wrong.

Jonathan 53:01
Well, yeah. Yeah. And and I don't what I looking again, like looking back, you know, I think it's also lost, like, feeling 300 is not great. Like nobody wants to walk around that way. It's just not a good feeling. So that's kind of what I always tried to remind medical folks like, if I want to fit, you know, I want to be in target. Let's just I'm confused as to why this is happening. Having high blood sugar just doesn't feel good. I'm not doing this on purpose.

Scott Benner 53:30
You said you started a nonprofit for this. Yes. That about?

Jonathan 53:36
Yeah. So my, my wife and I had sort of toyed around a lot with a nonprofit over the years. And we just didn't really know in what, you know, what theme and so I came back from Rochester, Minnesota from my surgery, came back to Montana. And obviously being in a rural area, I asked our hospital could you give, can you connect me with other ostomy? Folks? Do you know any other ostomy type one diabetics out there. And I was essentially laughed at. So I actually had a session with my counselor, I usually run to my counseling sessions, because it helps me sort of digest everything mentally. So I'm running home. And it was something that Tara and I and my wife had talked about something my counselor said, we need to start a nonprofit. If the support isn't here in town than it has, then we need to build it ourselves because I can't be the only one that needs help with a chronic illness. So evergreen adventures was sort of born from that. So we started it in one to connect the local community with each other from a chronic illness perspective. So I don't really care. I can't tell you I don't know if you've experienced this people come up to me and they're like, you know, I don't have it nearly as bad as you, you know, nearly as bad as your child or the case may be and I I'm not here You're to rate chronic illnesses, there's no scale, I want to help folks with chronic illnesses get outside in a safe and fun manner. That's really where evergreen has played we, we started a gear loan program. So if you're either a local in Montana or you're coming into the state to go to Yellowstone, or any of our amazing outdoor adventures, you can rent or I'm sorry, not rent, but borrow gear from us. So Big, Big Agnes, major outdoor company donated packs to us. We have loaner bear spray that we offer people, so they're safe out there. And I've been doing a lot of writing and outreach just to try to connect myself outside of Montana with other folks with chronic illnesses, but also just write about my experiences in the outdoors. With diabetes. In a poop bag. It's

Scott Benner 55:56
eg adventures.org. Right? Correct. Good. Okay. Thank you. No, thank you. I appreciate it. It's nice of you to try to help other people. It really is.

Jonathan 56:06
I hope. I hope so. Yeah, that's what's the hardest

Scott Benner 56:09
part about helping them? Is it reaching them? Is it like? Yeah,

Jonathan 56:13
I think it's, it's, it's the reach, as you you can appreciate, now I have a public relations and a communications background. So this was somewhat defeating, I think social media is is a is a beast, obviously in itself. So it was frustrating to or is frustrating to try to have a voice in that arena. So I decided to go back to the 1990s and start blogging again, because one I enjoy writing. So it was cathartic for me. But two, I just thought, if we can help one person, if there's one person out there that is either, you know, managing diabetes or preparing to go through a surgery like mine, we might have some information that could help them right. And from the caregiver side. Like from your perspective, I can't imagine now, as a father, I can appreciate, you know, what my parents went through a little bit more. But from my wife's perspective, you know, for nine plus hours, during my surgery, she sat in an Airbnb and did puzzles, to try to keep her mind. And she's the one that has to sit here every day. And quite frankly, as she said, the other nights see me in pain, because of everything that I'm going through, you know, having my colon removed, as you alluded to didn't fix the problem. I'm still managing sarcoid sarcoid is still hurting me, and really making life challenging, but I am stubborn to want to get out there and keep pursuing all these different adventures with my family and with other members of the community. But she needs support as well. Yeah.

Scott Benner 57:47
How do you do that, though? I just interviewed somebody the other day, who is I don't want to give a lot of their details away. But but their child is struggling, like really heartily trying to accept their diabetes. And, and it leads down some really dark roads. And I'm wondering how you're, you're staying? Well lit, I guess. How are you avoiding the shadows? It's

Jonathan 58:13
a it's a great. It's a great question. I think everybody does it at their own pace. My, this was purely by accident, my I played college soccer for a little while and my roommate on the soccer team was type one. And he didn't want anyone to know and got really, really ticked at me when I mentioned it to somebody, I had no issue sharing, he was far more closed off for that. And eventually he adjusted, but it just wasn't his time. Like he was still managing it internally. And he had a great support system around him to manage that. So I think part for me anyway, part one is having somebody to talk to whether that's a parent, a friend, someone, and then part two is is as a caregiver, allowing that person to sort of evolve it at their own pace, if that makes sense. And not rushing it to say, you know, like, you just have diabetes, it's okay. I think technology has been obviously incredible. But it's also, to me, at least, made it seem as though diabetes is easy to some outside observers that while you have an insulin pump, so it's no big deal. Yeah, it's still a full time job. It's still a lot to manage as an individual. So I would encourage kids and, and others to one not measure yourself by your numbers. Numbers don't dictate who you are, what you're doing as a person and to finding somebody that you can talk to I have a buddy now that I ride with most Fridays and mountain bike with and he's much faster than me, but he He takes a dials back every Friday and we ride together and just chat about anything and everything, it is very much a mental health ride. So finding something that offers you that sauce you might be reading might be writing whatever the case may be. But for me, it's been obviously running and outdoor activities,

Scott Benner 1:00:17
trying to strike the balance, I guess this is how I should start my thought trying to strike the balance between not judging yourself by numbers, and realizing that those numbers are helping you stay healthy. Yeah, that's the That, to me is, that's where the magic is right? And they give, you can make those two things work, you're on your way, because when you hear it go one way or the other, it's either, well, I didn't want to judge myself by the number. So I ignored them. But then I had all kinds of problems, or I made myself mental, and like, but hey, my one sees like, five. And, you know, like, like the balance in there. That's the, that's the sweet spot. And that whatever that balance is, is going to be different for different people, because some people are going to be more party. On the resilience side, some people are going to be more, you know, in need of more grace, like you don't I mean, like, you have to figure out who you are in that space and put yourself in that lane. And you don't get the freedom to do that. If everything that's being told to you, is so black and white. And, you know, I just You mentioned that at the beginning of what you were saying that I think it's just very important to figure out what works for you and not to rush it, it might take you some time to figure that out. Yeah,

Jonathan 1:01:31
and who you are, this may sound cheesy, but who you are as a diabetic who you are as a caregiver. And, you know, for for my wife, when I first when she was able to get the Dexcom app. She said, I don't need to look if you don't want me to. And I felt so good having somebody else being able to see my numbers. It felt like such huge weight off my shoulders. I was like, no, please, let's download the app. And, you know, so now, if she knows I'm out of the house, she'll text me like you doing okay? She sees me dropping or whatever the case may be, and then she'll apologize later. And so I can tell her like, it makes me feel great. It makes me realize that I gotta remember. I'm not alone, that you're here for me. And but I didn't. I mean, gosh, that took forever. It took a long time to get there. And it's again, like,

Scott Benner 1:02:25
I'm sorry, has she ever told you what makes her feel like she needs to apologize?

Jonathan 1:02:30
I think. So how she's explained it to me is that she doesn't want to be overbearing, he doesn't want to be overly protective. And she doesn't want me to feel as though I'm peering over her. Shoulder.

Scott Benner 1:02:44
Okay, which is she like that otherwise? Is there a reason for you know, that's what you see. Isn't that interesting? People who aren't like that are worried like, oh, I don't want you to see me this way. Meanwhile, she's not doing it. Right.

Jonathan 1:02:55
She's the most easygoing and fun, but I mean, we've got three kids, two dogs. Arabba, a cat, you know, we've got a busy household and she's unflappable. But she also kept we've realized over the years, he's also kept a lot of scary as, again as, as a caregiver. I can't imagine what it's like I couldn't. I know when my wife was was was going through hospital stays, it was gut wrenching for me. So to have me now on a regular basis, every few months, I'm going back to Rochester for a period of time to be monitored. And we're kind of questioning Okay, where is it now? That has to be really brutal. So not only identifying who you are, how you are as a diabetic and allowing yourself to sort of find that identity and having a support system to do that. But then also, as a caregiver, the same thing goes like, what's your caregiving style going to be? And I think it's a two way street between and I'm curious as a parent, how that works. But it's sort of expectations on both sides, if that makes sense. Like what you need from each other. Yeah,

Scott Benner 1:04:08
also, by the way, we're ignoring the fact that you are flying somewhere to get your care to it's not like it's you know, yeah, not like it's up the street from your house. Now, I does insurance cover the travel?

Jonathan 1:04:21
No, no, that's been an individual that I think meant well, once told me Well, you're fortunate that you had the money to fly. We racked up 20 roof $24,000 of credit card debt in travel in one year alone. And I'm not flying like you know, private here.

Scott Benner 1:04:42
You know, take it just just a little charter jet for yourself. Yeah, right.

Jonathan 1:04:47
And so it's like, yeah, we we hit my personal catastrophic Max each year. We keep getting we got another one yesterday, actually. Insurance company saying like, do you have secondary surance because you know your that your

Scott Benner 1:05:01
bill, somebody besides us anybody? Have you considered? Yeah,

Jonathan 1:05:06
right. It's yeah. And, and there's, yeah, there's times where we've talked about it. Do we need to move it? Do we why do we need to move to a hub? Do we need to? And the answer is no. Because I wouldn't change. It's not like I'm going every every other day, right. And the treatment wouldn't really change. And so, but it's been a serious conversation, which is tough to have. Yeah, of do. We need to completely uproot everyone because of my health.

Scott Benner 1:05:35
Right now. I just, I wanted to bring it up. Because, to me, it seemed like a major impact that just isn't gonna get talked about, you know, I know I talking all the time, like, I got to drive an hour to get through a good Endo. I'm like, You're, you just said Rochester and Montana. And I, and Rochester sounds like it's in New York to me. And it does to everybody else. Yeah, yeah. And so I flashed back to when someone invited me to come to Montana to speak recently. And I was like, No, cool. I said, Hell, there's like, it was like three planes and a day of travel to get there. Yeah. And I was like, Can I do it on Zoom? You know, like, like, what do you like, they're like, it's beautiful here. And I'm like, I can't stay. Like, I mean, if I was coming for a week, that'd be great. But it was literally three planes. And then a significant car ride. And, and 24 hours of traveling, I'm like, I can't I don't want to do that. Like, I guess I could, but I don't want to. And it would also mess me up for my entire like, it would probably screw up 10 days of my life, as far as making the podcast goes to because I'd have to get a bunch done ahead of time, just so I could travel so that when I got back, I was ready. I wouldn't be recording during that time. Like there was a lot of reasons why I couldn't do it. But then I'm just thinking of you going back and forth for your, for your medical treatment. But yeah,

Jonathan 1:06:54
I was on disability. And I've left my career was a consultant for the federal government. And that I have found that, yeah, I left my job last year. Last year, gosh, only feels like last year, but I last year, obviously I was on disability. And then subsequently, I returned to work for a period of time, and I couldn't do it anymore. I couldn't hang mentally, physically. It was it was too much. So I ended up having to leave and that going from a dual income to a single income is intense, to say the least and now trying to fit that reality. And that's another piece that within the Evergreen within the nonprofit side that I have conversations with, with people in town and elsewhere is people are having to make decisions, right? People are having insulin, while the rates may have dropped and should have dropped years and years ago. Everything's still cost money. And people are strapped when it comes to you know, affordable housing and food and everything. It's it's it all is connected. And I think that's lost a lot of the time, you know, that person doesn't take care of themselves. Well, do you know the whole extent? Maybe they're on eight, maybe they're having to make decisions on what they can do and what they can't do, which is

Scott Benner 1:08:14
you're a young guy who you're on disability, right?

Jonathan 1:08:17
I am now going through the process of applying. Now, obviously, sarcoid is not listed. As you can appreciate those

Scott Benner 1:08:26
people. Jonathan, if they did, it would have been on the top of the list, right? We'll never have to cover this. No one actually has it.

Jonathan 1:08:35
And so I'm the I can't I've stopped making the joke because the doctors just stare at me and I'm like, come on house. Nothing.

Scott Benner 1:08:44
I was you went to med school. I was there. I saw it all. They might have been well, you you. They might be busy learning about medicine while I was just watching it on television, in fairness. Yeah,

Jonathan 1:08:54
well, fair enough. But you should still have it. I mean, it's so yeah, I'm going I'm going through that lengthy process and painful process and then trying to justify and trying to explain it is it's challenging.

Scott Benner 1:09:06
Well, and then my, my next thought is, it's a loss of self No, like, part of what who you are I don't care what people say part of what you do is who you are. Part of who you are, is what you do, excuse me. And if you just take it from somebody and not being able to put money in the pot to I think is hard. Right? It's a

Jonathan 1:09:26
yes, yeah. And I said to my wife the other night I was like I said he or she stayed home for a period of time, obviously with the kids. And I say you you everything just seemed really well and flowing. I suck at this job. Like the kids are. I think the kids will want to go back to summer camp because dad's just not a good time. I'm still trying to figure out like, because there's days the other day I was in so much and I'm wanting joint pain and that goes along with the SARC was sarcoid and everything else and and just overall my It hurts so bad. It felt like somebody had a blowtorch in my mouth throughout the entire day. And so, when my wife got off work, I slept for three hours. Okay. And so there's that reality too, and, and whether you have diabetes wherever the case may be having those conversations with your kids, so they had that doesn't feel great right now. So I can't go to play baseball. I can't go mountain biking with you. I have to go asleep. That's hard. Yeah.

Scott Benner 1:10:26
No, I can't imagine actually. If somebody is listening to this, they're like, I think I have sarcoidosis. First of all, you probably don't. But if you think how do you? How do you get it diagnosed? And that's

Jonathan 1:10:38
the hard part. It's a, it as I said earlier, it's it's a diagnosis of exclusion. So it's essentially a you've, you've run every test imaginable. Sometimes you get lucky like I did, and you're able to see it on your skin, and they're able to biopsy and find that it actually is, in fact, sarcoid, because that's the other part is that when you say of sarcoid, if you I knew doctors that I mean, don't believe me, I'm like, go back into my records and read it. They're like, No, there's no way you have sarcoid you're just making that up.

Scott Benner 1:11:06
Like when people like, tell people you don't have lupus isn't real or whatever, like that kind of stuff. Yeah, you don't have exactly like that. Yes. Right. Right. Yeah.

Jonathan 1:11:17
No, very true. So I think one, it's, and again, this is difficult, but I, I had a primary care and a wound care center that believed me. That's the only reason I got to the diagnosis that I did, was they knew and they trusted me, and they knew that something was off. So they did not stop, they kept pushing and pushing. And then once again, once the granulomas showed up on my skin, they're allowed to do the biopsy. So my advice is if if one if you think you have it, hopefully have an open conversation with your care team. And as difficult as it is, Don't stop. Keep pushing the same thing with, you know, my lungs as an example. I thankfully had a doctor that believed me that said, well, we don't see sarcoid there. And but I told him, I said, I know, but there's something else going on with my lungs. So find a care team that you trust, one that you can collaborate with, and push. And just don't stop and try your hardest not to be discouraged. Because every doctor will tell you, you don't have it, and you're making it up. But if, if you feel like it's present, then you you're gonna have to be your best advocate.

Scott Benner 1:12:26
Yeah. You just need to keep pushing.

Jonathan 1:12:28
Yeah, yeah. And that's and educate yourself. That's the other part. Right? Read as much reliable

Scott Benner 1:12:37
sources. Yeah. What is that, like NIH articles like the Jeff to go that far to figure it out?

Jonathan 1:12:42
I did. So I've read a lot of NIH, I've read I trust, you know, Cleveland, and mayo. And I know the money, you know, they always say follow the money. And I know the money goes, goes there from different drugs and everything else. However, I do have confidence in those two institutions. So I read a lot of articles and different studies from them. Before you start, I've got an encyclopedia that I use to try to figure out, you know, different terms, whatever the case may be. But research studies anything by NAA, NIH, not just you know, you name it social media, and you know, cousin Eddie,

Scott Benner 1:13:19
yeah, no, I have to tell you, I mean, I've said it on here a number of times, but my son had, he was on his way to being diagnosed with everything except Hashimotos, which is what he had, because his symptom was just so uncommon, right. And it's, that's how we figured it out. Like, I just, I was online, reading, reading, like, like, you know, when people say I was reading in, they weren't, you know, like, I was, like, I was like, like, they're like, I've done research and like, 20 minutes, it's a pretty long article, you gotta read that quick. Like, I was digging through NIH articles about hives. And just, I hit it, I was like, Oh, my God, this is it. But then even once I had it, like, if you don't have a good doctor to go to now you have the information, and that doesn't matter. Anyway. So you know, luckily, we had a good endocrinologist that was already helping my wife and my daughter with their thyroid stuff. So I was able to go right to her and say, hey, look, I know, this is crazy. But look at this NIH article, look at what's happening to him. Can we just try the medication for this? And she was like, Yeah, let's go like, right away. Right. And, and I think she even gave me samples to get started with before like, so we didn't even have to wait that long. And if we don't find that one thing, the path they were heading him down was a not going to help and B had nothing to do with what was actually happening to him. So it's hard. You gotta you gotta throw yourself into it. You know? You

Jonathan 1:14:48
do I mean, I there's a there's a patient library at Mayo. And so my my mentality is when I'm there, I'm going to take advantage of every resource available to me, I will I mean I've sat in waiting rooms for a full entire day waiting for a certain specialist, I will find doctors on their lunch break. So maybe my, I don't know, maybe I'm listed as you know, a questionable patient. But I, they told me about their their patient library. So I went in it was just sort of like pamphlets. It was a nice library. But I said, No, no, I want the library like how can I? So I had to swindle my way and get access to the medical school library, which I probably shouldn't be talking about. But yeah,

Scott Benner 1:15:31
whatever. It all worked out. You're fine. Nobody's gonna get in trouble. Jonathan, is there anything we haven't talked about that we should have? Did I skip anything?

Jonathan 1:15:39
No, I, you know, at the end of the day, and it's a it's a complicated story. It's a complicated sort of disease experience. But from a pure diabetes perspective, I think I just wanted to retouch on the fact that, obviously, everyone is unique. Everyone has their own approach. And I think from a caregiver perspective, from a fellow patient, I just want to hear and and sort of collaborate and share what I've experienced in hopes, again, that it helps one person or one person can help me. I was able to be with my nephew a couple of weeks ago, who's type one, as I mentioned, and I was asking him questions. I don't I don't know everything. I haven't experienced everything, we can certainly take a lot from each other. And I'm grateful for the community that you've built. And I think it's incredible to see. And that's really my aim with Evergreen is I want to provide information with no judgment and a safe place.

Scott Benner 1:16:42
Well, man, that's it's a valuable wellworth thing to do. It's hard. Like you were saying earlier, it's making something so that people can find it is, I mean, you can say it's a lot of hard work, but sometimes I don't even know how it actually happens. I truly, yeah, yeah, there's so much randomness in what works and what doesn't. That it? I don't know. It's hard to quantify. It really is. There are times I think, like, I don't know, like, why is this podcast? I mean, this podcast is the most popular diabetes podcast in the world by leaps and bounds. And if you told me, I had to tell you why. And if I was wrong, you'd like throw me off a mountain, I'd probably just jump off the mountain because they'd be like, I don't really know. You know, like, I mean, I can guess I know what I think I'm doing right. But I, in the end, I don't know, I have no idea. Why just one video blow up and another one doesn't like, Have you never, like looked at a video thought That's hilarious. And it's got eight views. And you think that's not like why? You know, like, why that one? Not that one. It's just, it's it's tough, man. But it's wrong. It's

Jonathan 1:17:53
the relatability honestly, and I couldn't obviously I don't, I wouldn't be able to guess why one blows up over the other. But what I will stay in what I'm after is that relatability because as a caregiver, as a parent, you know, what it feels like to have a child with a chronic illness and helping manage that there's other 1000s of other caregivers out there that may not be in your same boat, but they can relate to maybe not sleeping great, because you're worried about your child, I can relate to others that get low right before a test at school, or maybe get wrote low right before a race. And it's frustrating things like that. So I think that relatability is is invaluable. And that's what you're doing. You're providing a platform. Wow.

Scott Benner 1:18:36
Yeah. But still, you know what I'm saying? Like, it's like, No, I totally did this information, because it doesn't make any sense. Right? It can be rock solid, and nobody can be listening to it. And I yeah, I don't know how that, like, that's just I don't,

Jonathan 1:18:50
I don't get it doesn't know. And then you see something that's totally outside of your wheelhouse. But like something that's totally ridiculous. And it's, you know, blows up. I put all this thought and time and effort into putting quality information together, and then this person eats a gallon of mayonnaise.

Scott Benner 1:19:12
43 million people have seen it. You're like, yeah,

Jonathan 1:19:14
exactly. And it's like, I'm over here trying to help ya know, that that that has come to my mind a lot. That's been a conversation in our house quite a bit. And I, I would be I do want to just I don't know, I'm taking up a lot of your time here. But I wanted to say my, my dream, my end. My wife keeps reminding me I said when I first when we got together and said we need to start a nonprofit and she was like, hey, you know, you have a lot going on. We now's maybe let's do it later on. Let's think through it. I was like, No, we had a 501 C three within four months. I raced through the paperwork, I wanted it, I still want it. And the reason I want it is again that one person she keeps reminding me all you said was you wanted to try to help one person but my dream is is much like you were mentioning and getting to Montana isn't always easy. But I hope to host some form of either both a kid's retreat and or adult retreat of outdoor conductivity. You know, I didn't mention how much mindfulness and meditation and all sorts of things play a role in my life, I need it. I do a lot of studying on meditation. I'm not particularly I don't excel in that area as far as my understanding of mindfulness, but I practice as much as I can. And so I want to have sort of a, some sort of a retreat in in the great state of Montana to show and, and get people together that may not have the exact same condition, but something similar to get outside and enjoy and, and have some community together and learn from each other.

Scott Benner 1:20:48
Yeah, well tell people the web address again.

Jonathan 1:20:50
So it's E. G. adventures.org.

Scott Benner 1:20:55
I really appreciate you coming on and sharing all this with me today. Thank

Jonathan 1:20:57
you. Thank you so much. I really appreciate everything you do. And it's it's fantastic. Thanks for everything.

Scott Benner 1:21:02
You're very nice. It's my pleasure. Hold on one second for me. Okay. Jonathan, I'm gonna hit stop in a second, but I'm just gonna leave a note to myself call this it's never sarcoidosis. There we go. Yes,

Jonathan 1:21:14
yes. Yes, I am glad you're going that route. That's awesome.

Scott Benner 1:21:28
Huge thanks to cozy Earth for sponsoring this episode of The Juicebox Podcast cozy earth.com. use the offer code juice box at checkout to save 40% off of your entire order. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box. This is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. I haven't mentioned this much. But the new link in the show notes for cozy earth actually takes you right to a page where everything's already 40% off. So I mean, pretty cool. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community. Check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com