Scott Benner 4/16/23 Scott Benner 4/16/23

#888 Iron Deficiency Anemia with Dr. Pelcovits

Ari R. Pelcovits, MD has type 1 diabetes and is on the show to talk about iron deficiency and ferritin.

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Scott Benner 0:00
Hello friends. Welcome back to the Juicebox Podcast. Today, we're going to be listening to Episode 888.

I was so excited to make this episode. I've got a doctor on, he's got type one diabetes, that's how I found him. But that's not why he's here. Today we're gonna be talking about anemia, and low ferritin. Now before you say, Oh, I don't have anemia, I don't have to listen, please trust me, just check this episode out. Anemia low ferritin. And its impacts are very, very, very much under diagnosed. 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 health care plan. We're becoming bold with insulin. Couple quick things. If you have type one diabetes, and you're a US resident, or you're the caregiver of someone with type one, please complete the survey AT T one D exchange.org. Forward slash juice box. It will help diabetes research to help you and it'll help me t one D exchange.org. Forward slash juice box. If you'd like to get 35% off your entire order at cozy earth.com. Just use the offer code juice box at checkout. And to save 10% On your first month of therapy. Go to betterhelp.com forward slash juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one wants to elevate awareness of type one diabetes by raising funds to find a cure and inspire those with diabetes to thrive, touched by type one.org. And I'm going to take this opportunity to talk about the podcast just for a second before we start. So sort of an ad for the podcast. A lot of the management stuff is broken up into series defining diabetes defining thyroid, the diabetes Pro Tip series, the bold beginning series, there's an entire collection of algorithm pumping episodes, ask Scott and Jenny, just episode upon episode of listener questions answered by myself and Jenny Smith. There's the diabetes variable series, the mental wellness collection, how we eat, and very new to the podcast, a type two series for people who are struggling to understand what their Type Two diabetes means or how they can get started with helping themselves. And of course, the after dark series, which has a long list of interviews with people living with diabetes, and their stories that let's just say don't usually see the light of day, you can search for the series within your podcast app, like you could say defining diabetes juice box and it would come right up. Or you can go to juicebox podcast.com. And there's links at the top of the page in the menu section that will allow you to see every episode that's in every series and collection and then you can just go to that episode as you please. And if you're in the private Facebook group, and please I hope you are in the featured tab. There's a tab at the top that's called featured. There's lists of all of these series and collections there for you as well.

Ari R. Pelcovits, MD 3:29
I'm already Palca that recently diagnosed type one diabetic and also a Hematologist Oncologist in Rhode Island. And happy to be here today.

Scott Benner 3:40
Good morning. How are you? I'm doing well. This is one of these odd situations. You ever hear somebody say I have x disorder and I can't wait for someone famous to get it so that they pay attention.

Ari R. Pelcovits, MD 3:54
Yeah, no. Yes. Yes. That is sometimes the best thing that can happen to any disease and someone famous getting that.

Scott Benner 3:59
So for my situation and what I'm trying to accomplish a hematologist getting type one is perfect. Sorry for your trouble, but I'm looking forward to picking your Yeah. Well tell me first How old were you when you were diagnosed?

Ari R. Pelcovits, MD 4:16
So I just got diagnosed about five months ago, and I'm 36 now so I was 35. Okay,

Scott Benner 4:22
is there a history of autoimmune in your family?

Ari R. Pelcovits, MD 4:24
You know, really little, my mom has Hashimotos which I feel like, you know, a lot of people too, but outside of that, I was sure I was gonna get cancer. I mean, that's kind of why I wanted to be in hematology oncology. And so it was it was a nice surprise. When I got this diagnosis.

Scott Benner 4:39
We wait You thought you're gonna get cancer. So you became a hematologist? Tell me about that. Exactly.

Ari R. Pelcovits, MD 4:43
Yeah. Well, you know, my mom have had breast cancer, which he's doing great from, and my brother when I was a kid had lymphoma, also, he's doing great. So just a lot of life experiences that I think led me down the path towards oncology, and then always in the back. I mean, I don't know if it's true every doctor but I think a lot of doctors are hypochondriacs and assume they're gonna get almost every disease, but most likely also assume the ones they treat they're gonna get because they see it all the time.

Scott Benner 5:13
Well, I can tell you this, that a lot of people who need therapy become therapists. I don't know why that

Ari R. Pelcovits, MD 5:20
Exactly, exactly. Yeah. Although my endocrinologist told me other day that maybe I should take my endocrinology boards now just for fun.

Scott Benner 5:28
Well, you're a, you're a well educated man, you certainly went to a good medical school and tell people where you went and what you're doing now.

Ari R. Pelcovits, MD 5:36
I went to medical school at the University of Maryland where I grew up. And then I came up to Rhode Island and did my residency and fellowship at Brown University. And now I've stayed on and I treat patients with both cancerous and non cancerous blood conditions.

Scott Benner 5:51
And that explains why your internet stinks. Okay.

Ari R. Pelcovits, MD 5:55
That's exactly.

Scott Benner 5:57
Alright, well, I will not go down the rabbit hole of Rhode Island. I'll skip right over that. That's fine. And, and just say how long you've been practicing?

Ari R. Pelcovits, MD 6:07
Well, so actually, I'm just out of out of training. So you know, medical training, just to be fun takes forever. So my training was seven years, and now I'm about six months or no longer nine months out of training. So I'm almost finishing my first year in training.

Scott Benner 6:20
Wow, that's insane. Well, I appreciate all the effort you put into it. It's really, really something honestly, may you live long enough to pay off your debt?

Ari R. Pelcovits, MD 6:32
Make it worth it? Yeah. Okay.

Scott Benner 6:33
So tell me a little bit about how you manage your type on. Yeah, so

Ari R. Pelcovits, MD 6:37
I currently am on a pump. I'm on the tandem T slim. And I have Dexcom, which I was able to get pretty quickly, I think, was on MDI just for a couple months after diagnosis, and then got on a pump, maybe about two months ago or so. And it's been pretty awesome with the pump since then.

Scott Benner 6:57
Are you using control? Like you? Yeah. How do you find it?

Ari R. Pelcovits, MD 7:03
You know, I find it overall good. I eat I wouldn't call myself like a low carb person. But I definitely changed my diet since diagnosis and much more of a low carb on the end of the low carb things. So I think, you know, I stay pretty steady from that perspective. And I don't think control IQ has to do a ton of work. It is interesting where I didn't notice, like I think with Lantis you know, I kind of knew what was on board always. And with the control IQ the way it's kind of adjusting things. It can have some impacts where you know, some days I have more insulin on board than others just because for whatever I've been doing, it's decided

Scott Benner 7:40
I needed more. Yeah, you're using Lantis out the box. Yeah,

Ari R. Pelcovits, MD 7:44
I started on Lantus and fast acting with with males.

Scott Benner 7:48
Okay. Hey, are you did you put on a headset with a microphone? I did you just move it a little farther away from now from your popping a little bit? Yeah. Is that better? Yeah, we'll find out. So okay, all right. Well, I don't want to skip over your diabetes, but I have a lot to ask you. So yeah, that's fine. We can come back to my diabetes. Okay. Where does this begin? Where does my obsession with understanding people's iron and ferritin levels begin? I guess, if I look back over my life, I was a person who was tired all the time. I didn't know it. If I came to your house to watch a movie, you know, back when people rented videotape, so if you remember that. Yeah. I would be asleep halfway through the film. It was a joke. We go to a theater. Scott be asleep. Come to the house. Scott's gonna fall asleep. I have fallen asleep. Driving a car. Oh, gosh. Okay. I mean, in in moments when you probably shouldn't just, it just became a thing. Sort of just like, and it was always put on me. By the way, there it was. It always was. I was always treated sort of like, oh, like he can't even stay awake. Like it was nobody ever thought anything medical. They were just, you know, anyway, 80s 90s. I don't know if people realize how much more the world's come along because of the internet and things like that. But back then somebody made a snap decision about you. And that was it for the rest of your life. Right? You were sleepy. So I'd go through bouts of it where it was terrible. And then it would get a little better go back. I'd get used to it. I was good at pushing through it. I guess one day, I just said to my wife. I feel like I'm going to die. And I didn't know another way to put it. I was like, I'm like if if this isn't what dying feels like then you know, I don't know. So I went to a battery of different doctors. And my ferritin level comes back very low. I think like 13 Maybe. And, of course, like I didn't realize it at the time, but everybody in the room looked at me like oh poor guys got cancer. like that, that's now I look back. I know that was the look I was. Yeah. And how old were you then? Oh God in my 40s, my mid 40s Okay, you know, and then the battery of tests, we're gonna put it through, we're gonna put a camera up your ass, we're gonna put a camera down your throat here swallow this giant pill, it's got a camera in it, like, like, all that stuff. Come back. And the answer is, huh, there's nothing wrong. I was like, okay, so any reason you can think that you would have blood loss? And I said, I've had one pesky hemorrhoid my whole life, but I don't know that it's bleeding that much. You know, like, meanwhile? I don't know. Like already. I don't know. Like how much blood loss is blood loss? Right? You know? No, yeah,

Ari R. Pelcovits, MD 10:49
you what looks what looks terrifying to you sometimes in a toilet bowl is actually kind of mild compared to what will really drive your numbers down.

Scott Benner 10:56
What a nice thing to say. And it's so anyway, then some tests come back. I have something called Berets. Okay, and maybe you're not absorbing iron correctly, Scott. You know, I don't have celiac. I don't have like, you know, like that. All that. So I'm like, Okay, so what's this Berets? And then you might be able to explain it better than it was explained to me. But it's been. I kind of assume it's like a precursor to a can a soft to cancer. But

Ari R. Pelcovits, MD 11:28
yeah, doesn't necessarily have a GL was the word I think you were holding back on.

Scott Benner 11:32
Thank you. Because I wasn't certain. So cursor, esophageal cancer, but doesn't have to be that and, and take this thing and keep, you know, keep your stomach acid down? Well, at that moment, I was like, Well, I'm just going to change the way I eat. If, if that's it, because I didn't, I did have heartburn, like throughout, maybe not throughout my life, but it was getting worse. So I cut out like oils. It's a strange thing. But I cut all oils out. I stopped eating later at night, like little things like that. And I was actually able to deal with it on my own.

Ari R. Pelcovits, MD 12:06
Without any sort of medicine for the heartburn. Yeah, I

Scott Benner 12:08
used the medication in the beginning, but then I got away from it. And I still keep like a, I don't know, like an acid like a chewable by my bed in case something happens, because I've learned not to ignore it. But I mean, I might be used those. I don't know, once every six weeks, something like that. So and that's and

Ari R. Pelcovits, MD 12:27
you're still getting iron infusions now or you sort of got it and you're done. Oh, no,

Scott Benner 12:31
I get the iron infusion. I feel like a million bucks. Six, eight months later, I start tailing off again. And then I gotta get him again. Yeah, I've had iron infusions. I've lost track. Now. Honestly, over the last couple of years, I've probably had 10 of them. And I, you know, I take my biggest my biggest leap was that the doctor kept saying, Well, maybe it'll hold on. And then one time after an infusion, he retested my iron in my heart and was so high that he was like, Oh, good, you don't need to take a supplement anymore. And then I was like, Oh, I'm good. And then I didn't take the supplement. And then of course, eventually, it dropped back. Right?

Ari R. Pelcovits, MD 13:12
I mean, your story that your story is so classic for the type of patient I see with iron deficiency. It just the number of people I see who go down that same path of, you know, where's the blood going? Where's the iron going? We can't find it. But clearly, something's going on here. And they need iron to feel better. Yeah, I'd be happy to kind of run through, you know, why we think that process and you know, what are sort of when someone comes in with low iron, what we're thinking about and why they thought you had cancer? If that would be helpful, please do. Yeah. Yeah. So you know, well, the main thing is that we need iron to make make our blood and that's why we care about it. And so oftentimes, if you don't have enough iron, you also then won't be able to make make enough red blood cells. And that's when we use the word anemia, so become anemic. And I think for a long time, people thought that it was only if you became anemic, that you would start feeling crummy. But clearly, there's tons of people like yourself who just having low iron makes them feel awful, tired fatigue, no energy. And the way we can sort of not have enough iron in our bodies is usually one of two mechanisms, which is either we're losing it in the blood, because the iron that's in our body is mostly in blood. So whenever we bleed the iron in there, it gets lost. And then our body uses up whatever sort of iron stores we have. Or we're not absorbing enough iron. And so and someone who's over the age of you know, we used to say 50. But now with this happening younger, probably even over the age of 40. If you come in and especially if you're a man and don't have any other reason to be losing blood, we certainly worry could this be a cancer in the GI tract or colon cancer, cancer higher up that's causing you to lose blood and that's why you have low iron

Scott Benner 15:00
Oh, to say that I don't feel well. By the time I was able to tuck a hematologist into giving me an infusion. And it was really like I had to bang on people's heads, because the last thing they made me do was eat. Even though I didn't have any signs from testing of celiac, they made me eat a gluten free diet for a month. Oh, interesting. And so I'm eating a gluten free diet. And one day, I'm in my kitchen, and I just bend over to pick something off the floor. And I almost went headfirst into the floor. Like I was diving into the floor on purpose. I just couldn't hold myself up anymore. I was at the point that no matter how long I slept, and when I got up by 1pm, I couldn't function anymore. And I took myself to the emergency room.

Ari R. Pelcovits, MD 15:53
And were you were you? Did they make you go on iron pills first?

Scott Benner 15:56
Oh, I had to do everything. Everything that everyone knew wasn't going to work I had to

Ari R. Pelcovits, MD 16:01
write did you get the bad constipation from the iron pills? No, because

Scott Benner 16:04
I used a really good formulation to do it. I used I use the thorn labs iron I mixed it with a their vitamin C brand and I didn't have any trouble with that. I've also learned by trial and see works really well. Okay, but point being I wasn't just didn't feel well, like I was shutting off. And, and so I went to I went to the emergency room. I because the doctor still wouldn't give it to me I hadn't completed all the things I had to do. I told my wife, I'm like, I'm not gonna make it to the end of what he needs to do. And I explained everything to the ER and some lovely doctor in the ER gave me a small iron infusion not nearly enough, right? And it was that enough to like, Let me hold on until until the doctor was fine. Then they put in that first infusion waited a week gave me a second one. And I'm gonna say that in a month, maybe six weeks? i It changed my life, like I was just met. And is that because you have to remake red blood cells with the new iron in your system? Is that right? Yeah. So

Ari R. Pelcovits, MD 17:15
it depends. So if you if you're also anemic, so we sometimes use these words interchangeably, and it can get kind of confusing. And I think especially if people go and donate blood a lot, they'll sort of say things like oh, your your iron is good today when they're actually not testing your iron. So you know, you have your your hemoglobin and your red blood cells. And when those are low, really the word is anemic or anemia. And then you have your iron. And you can have low iron and ferritin is a what we use to measure sort of how much iron you've got kind of stored up in your body that's available for use, if you have or

Scott Benner 17:55
just a quick reminder to go to touched by type one.org. And to find them on Instagram and Facebook. At touched by type one.org You go to programs. And then you can scroll down to see everything that's going on the annual conference, an awareness campaign, a dance program, dancing for diabetes, they have a D box program, a golfing event, and other stuff, videos and pictures what they're doing links to get started. And by the way, that annual conference, let me click on it and see if there's a date listed yet. Because I'm going to be speaking at it. Oh, it still says Stay tuned for 2023 announcement date. What we're getting close. And I think I know the date. So go check it out. It's a great event in Orlando. And by the way to say it's a great event is an understatement. Beautiful facility, wonderful staff, great speakers. And I mean, I'm going to be there so touched by type one. dotwork Hey, if you're feeling overwhelmed, and you'd like to have some talk therapy, you can get 10% off your first month of therapy at better help.com forward slash juicebox just signing up at that link saves you 10% off your first month. Again, you can save 35% off your entire order at cozy earth.com By using the offer code juice box at checkout and athletic greens athletic greens.com forward slash juice box I think you get free. Yeah, vitamin D for a year and five free travel packs with your first order at my link athletic greens.com forward slash juicebox. And don't forget juicebox podcast.com To find the series and the collections. And please subscribe and follow in an audio app like Apple podcasts Spotify or wherever you get your audio I hate to say that

Ari R. Pelcovits, MD 19:54
you disagree. First thing that has to happen is you've got to make my red blood cell sorry

Scott Benner 19:57
I'm sorry you disappeared again but we're on a good day. Yeah, so let's keep going ferritin from there,

Ari R. Pelcovits, MD 20:03
yeah, so ferritin is a measure of how much iron you have left in your body sort of leftover for you to use. And so if you also have anemia, if you don't have enough red blood cells, when you get an iron infusion, your body first sort of takes that iron to make new red blood cells. And so if part of the reason you're feeling so crummy and fatigued is because of the low red blood cells, then it's going to take a little time for those to get made. But then you're also going to need to sort of replenish those iron stores. And sometimes it's just redistribution of what's been put in your body, and everyone's going to be different. And I know I think you're like the ideal patient your response. And you know, when I see people for this reason, I often try to caution them and say, Look, you know, lots of different things can cause people to feel terrible. Clearly, the only thing we found right now that's doing it is low iron. And so I'm gonna give you this IV iron, and my hope is that you have the Scot response. And, you know, four to six weeks from now you feel like a different person. Yeah. It doesn't work that way for everyone. You know, some people will get okay, I feel a little better, but something else is happening. Some people, especially when it's just low iron, and they're not anemic, I give them the iron and they really don't feel any different. But and not not the question, sort of the care you are getting, you know, IV iron is a pretty safe medicine, they probably talk to you about this, the sort of the main side effect we worry about is very few number of people can have an allergic reaction to it. Yeah. Outside of that, you know, cost and things like that you certainly want to think about but I'm pretty liberal and who will at least give it a shot with it too. You know, and if you're someone where I give you the IV iron and you have no response, you know, you don't feel any better. And there's nothing dangerous about your numbers. Well, then sometimes I'll say okay, we'll give it a try. And clearly this is something else.

Scott Benner 21:53
No, for sure. i And to your point about perhaps having a reaction. I think the first two times they gave it to me, they gave me IV Benadryl to and then after you don't have a reaction a couple times, I'm like, I'm gonna say no to the Benadryl.

Ari R. Pelcovits, MD 22:09
Yeah, that was the right thing to do.

Scott Benner 22:12
This is ruining an entire day of my life. And I don't use the Benadryl anymore. As a matter of fact, I go in there, I'll tell you, one of the most difficult things about getting an iron infusion for me, is that I walk into an infusion center, where everyone has cancer. Yes, and I I roll in 20 years younger than them, probably looking like a million bucks. And I'm like, What's up everybody, I'm here for my butt. So I keep it very, I keep my head down, I walk in very solemnly, it seems like a very, it's almost seems like a religious setting. I don't know another way to say it, you know, and, and I walk in, I keep my head down, I get my iron and I keep my mouth shut. And I leave, just try to be respectful to everybody. But the, the response I have is insane. Like, like, it just happened again, where it was four weeks ago. And I said to Kelly, I'm like, Oh my God, my iron slow. And we were getting ready to go on a trip where I was gonna have to drive to, you know, the East Coast, I was going to drive from Jersey to Atlanta. And then in like, and then back again, like 10 days later. And so and so I got went through the whole process, I knew my insurance company was going to say, okay, because you know, we've gone through it before, and I just got on the phone with them, like, I need this before I leave, I grow my iron won't kill me, I'm gonna have a car accident, you know. So I'm like, I have to go on this trip. So they were able to sneak one in before I left. And about three days into my trip, I said to Kelly, I'm like, I'm starting to feel a little better, like, and then it progressively got better. I got back, I took another infusion. Now it's been maybe two weeks since the second infusion. And then so many things like little things in my body get better my muscle tone picks up. My GI tract works better. You know, energy all that's right back again, my mental clarity is back. Like there are episodes of this podcast where you guys won't know it. But I'll think around words, like I'll be making the podcast. And I don't know how other people's brains work when they're, I can I can feel what I'm going to say before I'm saying it. And I can look ahead at my sentence and go I can't find that word. And then I'll talk around needing the word. And that happens when my arms lower too.

Ari R. Pelcovits, MD 24:32
So not not to talk too much about diabetes. But what I will say is that since getting diagnosed, I think one of the lessons as a as a doctor I've tried to take from my experience is listening to the patient. And this has been true both from my own experience, but also kind of listening to the podcasts and on the Facebook group. And just, you know we have our textbooks and we have what we're taught. And certainly you don't want to just run away from those and start practice. The same, you know, crazy medicine just for the fun of it. But it's clear that that's not going to capture every patient experience. And the people, you know, and this has been said over and over again. But the the people who are the best experts in any condition are the people who have it. And so kind of what you're describing with this, you know, your response to IV iron is, I mean, could I find every every symptom? You just said in a textbook? No, but but why would I deny what you're?

Scott Benner 25:31
I'm assuming you're just going to come back in a second.

Ari R. Pelcovits, MD 25:33
Iron? And could you give me an iron infusion? Well, I'm not going to go kind of try to do that, because that wouldn't make any sense. But, but listening to people and sort of saying, Look, you're having this experience, I have a medicine that can make you better that I think within the risks and benefits of what's safe and appropriate, and within sort of what we consider appropriate medical practice, you know, listening to the patient is really important.

Scott Benner 25:55
Is it? Or is it that? Is that that low iron can't cause some of the things? Or is it that just historically, and traditionally, you don't attach? Like muscle tone to that as an insult? Yeah, I

Ari R. Pelcovits, MD 26:12
mean, I think it would probably be that, well, here's what I would say, taking a step back, I think the reason anemia, the reason when your red blood cells, your hemoglobin gets a low, you feel tired, kind of makes sense from a scientific perspective. So your red blood cells carry the oxygen all around your body. So when that gets low, you know, on some level, you kind of, you know, make sense that you're probably not delivering enough oxygen to all the tissues, and so you're going to feel tired, weak, etc. The reason that when your iron is low, you also feel that way is not quite as clear. Because you would think that if your red blood cells are high enough, then okay, so you don't have enough iron in your bank. But I'm still getting all the oxygen I need everywhere it needs to go. But again, it's so clear, and this is not controversial, that there are people who have these symptoms when their iron is low, yeah, without anemia.

Scott Benner 27:05
And I'll tell you that I've now met so many people because of the podcast. And that, and I, and I'm thinking too, because all is this? I mean, can you step back and imagine that this isn't crazy that my daughter has type one diabetes, my son has Hashimotos and I have trouble with iron. Is that is that somehow connected? Because why am I meeting so many people who either have type one, or kids have Type One, who are also talking about the same symptoms, and have the same test lab results around their iron in their ferritin?

Ari R. Pelcovits, MD 27:41
Yeah, I mean, I think the main way you would want to tie it all together would be celiac, because that would be the sort of other autoimmune condition that you know, would run in the family and would cause low iron. So outside of celiac or Crohn's disease, ulcerative colitis, these other autoimmune conditions that impact your gut absorption, I can't say there's a clear way I can connect it probably it's more coincidence than just that iron deficiency is really common. But I mean, you know, maybe there's something there that

Scott Benner 28:12
we need to investigate. Why do you think iron deficiency is very common?

Ari R. Pelcovits, MD 28:16
Well, so when, in young women, almost any woman who's having her period will have some amount of iron deficiency. So, you know, you test that anyone, you know, between the ages of, you know, when they have their first period until their last, they're gonna be probably, you know, a good chunk of those people are gonna be iron deficient. And then we have, you know, again, I think it's more that is symptomatic iron deficiency as common as just iron deficiency. So sometimes we end things in medicine, we go looking for them, and we find them. And it's, but does that necessarily mean there's a problem there? And some of that is sort of the test with treatment. So do we give a treatment? And do people feel better? And there's a lot of people who, who aren't like you who like I said, Well, we'll only have a little bit of low iron there, you know, hemoglobin will be normal, and I give them some IV iron, and they really don't feel any better. And so those are the people where I say, Look, we found this by accident on bloodwork, I don't want to sort of give you extra medical bills, extra visits, just to sort of solve a number, if it's not really making you feel any better.

Scott Benner 29:11
Well, I know it makes me feel better. There was a day where I needed an infusion. And they're like, we can't we don't have a chair and I said, I'll drink it. And she said, and she laughed, I said, I'll do it in the parking lot. And she laughed again. I said, if you think it'll help, you can stick it up my ass. Because I need this future. And, and they laughed and found a way and I'll tell you this too, a number of years ago, probably four years ago now. My son had a lot of the symptoms. And he was a college athlete. He was like killing himself, you know, and we got him some blood work in his part and came back very low. And we got him an infusion and it changed things for him but now he just takes a supplement. And it's he seems to be fine

Ari R. Pelcovits, MD 29:59
and they never found because in his case, well, no,

Scott Benner 30:01
but about two years later, he was diagnosed with Hashimotos.

Ari R. Pelcovits, MD 30:05
Okay. Okay, so that definitely could have been playing a role. Yeah. So

Scott Benner 30:08
now he just takes a supplement, you know. And I'm actually I don't know the name of it, but I just started seeing an endocrinologist. So I went into the doctor, I was like, Look, I and I'm telling you this to see if you see a connection to my body is always carried extra weight. I say all the time on here, and anybody who will listen, I am the fattest guy who doesn't eat that you'll ever meet in your life. And so I do not consume food, commiserate to my body. And so I went to this Endo, and I'm like, Alright, look, the kids are gone. Like God bless them. Hopefully, they'll live but it's time for me to try to stay alive. You know what I mean? And battery of tests, and she comes back and says people would kill for your bloodwork. And I was like, I wanted to be happy. And I was like, Alright, great, but no answer there. You know, like, Why does my arm keep falling? So she wants to put me on something a little stronger as far as iron goes than what I'm taking now. And I said, Well, what about the weight? And and to give you some context already, like I stood in front, I've known this woman a long time. She's been on the podcast, actually. And I'm going to bring up something that she told me in a second to see what you think about it. But I so I know her. You know what I mean? Like, we're not we're not friendly. But we know each other very well. I stood up in her office, and I said, How much do you think I weigh? I was like, be honest. Just I mean, you look at people all the time, what do I weigh? And she goes, I think about 175 pounds. And I said, Yeah, I'm 233. I'm like, I'm like, what, like, so that's part of the problem, too, is I carry it well enough. That like, I don't personally look at myself and go, I have to lose weight. Like, do you know what I mean? Like, it's that kind of feeling. So she's like, What do you really? And I was like, yes, she examined me. And she goes, I'm gonna put you on Wigo v. And I said, okay, like, right on. So yesterday was my second injection, I'm still not on a therapeutic level of it yet. I'm taking, I don't know, whatever. This is, like point two, five milligrams, I'm down seven pounds. Wow. And so I got to the point where I'm like, I'm 51. I don't even care why anymore. I just, I don't want to have a heart attack. You know, like, like that. That's that, like, you know, so I'm, I'm getting out of this anyway. I can.

Ari R. Pelcovits, MD 32:32
Yeah. But so. So yeah, so obesity? And weight? Oh, man, you know, you could do and you maybe already have, and I haven't seen it, but you could, you could do, you know, podcast upon podcast about that. And it's certainly not my area of expertise. But, you know, what I would share is sort of a few things. I think, like many things in life, you know, I think there's probably extremes, and then there's the truth somewhere in the middle. So, you know, there clearly is, you know, we call it sort of, you know, an obesity epidemic, or whatever term you want to use it, there has been a rise over the last several decades in, you know, people's weight and obesity. There's also clearly, you know, some link between weight and bad outcomes in healthcare. So, as your weight increases your risk of certain things like heart attacks, and some cancers goes up. But, you know, at what point that happens, exactly. So, you know, at what point do you cross the threshold where, you know, if I weigh this amount, now I'm at risk for a heart attack is is a bit unclear. And, you know, there's probably some amount of being slightly overweight, that's not quite as bad for you, as maybe we've been sort of led to believe in our general culture of thinness. Sure. It doesn't mean that, you know, living a healthy lifestyle isn't important. But I think it's like, how do we focus on the numbers? The other thing is, there's certainly some data about where your weight is as important. So probably carrying your weight in different places in your body can lead to different outcomes. And that's not a choice you can make. That's just the way your body is

Scott Benner 34:05
right. Yeah. And I'm carrying it in the wrong places because it my arms, my legs, my ass, I looked like I weigh 175 pounds. So not great. And, and so, you know, that's but do you see any? Is there any relationship to carrying extra weight and anemia or low iron or low ferritin?

Ari R. Pelcovits, MD 34:27
No, not particularly. I wouldn't think I mean, again, you know, maybe you could, you could sort of try to connect things where, you know, the low ferritin the anemia is making you, you know, more tired and weak and so you're living a less active lifestyle. But again, the sort of science of weight loss and weight gain is, I think, so complex. And, you know, I think what these medicines like what Goby have taught us is, every everything before this where we've tried to get people to lose weight by restricting what they eat and you know, putting them on intensive exercise regimens, never works, and the majority of people can't keep that weight off, or a lot To people doesn't even work. And so there's something about these medicines that are working in an entirely different way. But yeah, I couldn't I couldn't say that just being overweight is going to lead to low iron.

Scott Benner 35:10
No, no, but could low iron lead to weight retention?

Ari R. Pelcovits, MD 35:14
I think the only way I would imagine is sort of through a sort of decreased exercise type of situation where you're just a less, you're being less active because you have less energy. Well, I'm sharing

Scott Benner 35:24
it and bringing it up, because I don't know I just, if it helps somebody just to put, you know, connect some dots for themselves, then that's it. I mean, the amount of people who after I, I talked on the podcast about having my iron below, the amount of people that reached out is stunning. Like, like, really, really stunning. It's almost like thyroid and you know, oh, you're in range. So we won't give you the hormone. But but, you know, once they heard me say, I, you know, we manage Arden's thyroid, to under two, like, that's the goal, like her TSH needs to be under two, that's how we're managing. They're like, Oh, but mine's four, and I have all the symptoms, and my doctor won't blah, blah, blah, and like, that just happens over and over and over again, there's got to be some sort of a metabolic balance to your body. And that if it's too far out of whack, I just, I think things just can't work. And, you know, I have no medical experience, but I can tell you that I have a number of little things wrong with me. And once I, once I put them in a better situation, things improve that there's no connection to I mean, because of Arden's trouble with food, and digestion, probably from type one, I started taking a digestive enzyme with my meals, and it's really improved my life. So what the hell who cares? Why I don't even

Ari R. Pelcovits, MD 36:49
exactly know. I mean, I think that goes back to this sort of what I was saying before about, you know, listening to patients, but also the humility of practicing medicine. So, you know, don't try not to come into, you know, when I meet a new patient, not trying to come in thinking I have this ego that I know more than them, but really listening. And like you said, when you encounter something that's making someone feel better, you know, make sure you don't harm someone, don't tell someone to do something that's going to hurt them. But listen to people and believe them when they're feeling better. And like you said, if we can't explain it, but it's it's overall leading to better outcomes. And sometimes that's what's most important.

Scott Benner 37:22
Yeah. Okay. So Dr. BENITO came on did a long episode about thyroid. And in the middle of it, we talked about iron on ferritin, a little bit. And she said, her patients, a woman of a menstruating age, she thinks of a ferritin of 70, as absolutely minimum. And I wondered what you thought about that?

Ari R. Pelcovits, MD 37:48
You know, that's a little higher than I would, again, well, that means taking a step back again, I think it's what do we mean by by low and not just treating the numbers? So, you know, going back to this concept of iron deficiency and anemia? I think it depends on what's going on, and why the I'm seeing the person. So if someone's been referred to me, because someone checked the ferritin level, and it came back at 25. But this person feels fantastic. They're not anemic, you know, they're running marathons, then I say, just look, just watch it. Right, I don't think there's been any clear evidence that simply pushing that number higher necessarily is going to, you know, make things better for them, right, where simply that same person could walk in with that ferritin. But if they're feeling crummy, then I might say, let's give this a shot and treat it. So I think the number itself, although certainly, you know, there are going to be normal values. It's going to depend a little bit also on how that person is feeling. Yeah.

Scott Benner 38:48
No, I agree. And I don't think she meant, you know, if everything's happy, go lucky. And you're 70 I need to give you more iron. But I but I think she means for people who are, are complaining of these issues, that she still thinks of 70 is as lower. And I mean, I don't know, this woman is an integrative endocrinologist. She's helped my family significantly. She's managed thyroid levels when other people wouldn't have touched them. She's just been like, she's just a little. She's not crunchy. Like, it's all very scientific. But right, but, but she's just seems to be on the bleeding edge of what she's doing. Right. Right. And

Ari R. Pelcovits, MD 39:32
yeah, I mean, again, I think that I would, you probably have to twist my arm a little bit to get me to treat someone just for Farrington. You know, if you came in and you were labs look pristine otherwise, and you're feeling crummy, but your ferritin was 60. I don't think I would be rushed into to give that person you know, IV iron.

Scott Benner 39:50
So when you give it to them orally, though, is there really a chance of it helping? And do you think this is going to be a two prong question? Like, is, is the state of our food? The reason for this? Like, are we just not eating iron rich foods?

Ari R. Pelcovits, MD 40:09
That's a good question. You know, I don't, the what we can absorb through food is somewhat limited. So if you get into an iron deficient state, so if you have some sort of bleeding event, right, let's say you've never had iron deficiency before, but you get an ulcer in your stomach and it gushes out blood, it's hard to get your numbers back to normal without some amount of supplementation through pills, or IV, you know, just eating a lot of steak isn't going to always do it. So but on the other side, it's a little not impossible, it's hard to become iron deficient, just by you know, being a vegetarian. Again, oftentimes, when I see people probably like yourself, where we can't find the exact reason, it's probably a combination of things. So it's, you know, they've not been eating a lot of iron rich foods, maybe they've got a little bit of bleeding, we can't find, or I have more that's been bothering them for 30 years, they might be on a medication that's blocking some amount of iron absorption. So it's maybe not one thing alone. But all of these things added together. To be honest, we probably eat too much red meat as a society. So I can't say that we're not eating quite enough iron, although, you know, we have iron and a lot of other foods as well.

Scott Benner 41:20
I do my part on red meat and helped me at all. And so is it. Does it make sense to you that about every eight months I, I just deplete?

Ari R. Pelcovits, MD 41:31
Yeah, so you're probably having my guests if you know, is you're probably having some amount of small amount of bleeding. That's ongoing. And so it's, it's slow, and it's small. So it's not enough that they're going to catch it on any sort of colonoscopy or endoscopy or any camera looking anywhere. But it's persistent enough that every eight months you kind of start running out a little bit.

Scott Benner 41:55
And stuff. Do you think supplementing could stay ahead of it? Like, should I like, double down on supplementing? And do it?

Ari R. Pelcovits, MD 42:02
Like you mean with like taking pills orally? Yes. Yeah. So it depends, it depends on the dose you're at, there's actually a point where the oral medication can kind of start backfiring if you take too much. So we used to recommend people take these like massive loads of oral iron, you know, they would take pills three times a day. And what we found was that it was it was probably confusing the body. And the body's sensors in the gut would see all this iron coming in, and would start being like, Oh, God, we must be getting too much iron. And we'd really shut things down, and it would stop working. And so that's why we now recommend you take it every day or even every other day. So there's sort of a limit to what you're gonna be able to accomplish through pills.

Scott Benner 42:43
Do you talk much about gut health? It's such a weird thing to talk about with doctors, because I feel like it's unknown, to a large extent, but absorption happens there. Right? So yeah. Are there things people can do to make their stomach a more hospitable place to absorb things?

Ari R. Pelcovits, MD 43:02
I mean, you know, I think certainly there are going to be some medications that get in the way of absorption. There are some really good doctors actually at our hospital who do a lot on sort of Gi you know, the biodiversity of your GI system and gi health. I will plead guilty that I probably don't do a good enough job like all doctors and talking about nutrition and what's going on in your gut. But but they exist out there.

Scott Benner 43:28
I'm suffering for the word, I can't come up with it. When I take a medication like keep stomach acid down, what is that? It's a something inhibitor, h2 blocker or a proton pump inhibitor, proton pump inhibitor, they also slow down iron.

Ari R. Pelcovits, MD 43:43
They do. Yeah. So there's a little bit of controversy about exactly how much but I think they certainly, again on that sort of, you've got a couple things on the scale. You know, that alone probably isn't enough to make you iron deficient. But it's certainly in combination with other things. Well,

Scott Benner 43:57
yeah, but when you're me, and they're like, Hey, take iron and take this for stomach acid. I was like, wait a minute how I know. Yeah. They gotta fight with each other. And but anyway, okay, so let's talk a little bit about how to get people help. So they have first of all, what do you see as the classic signs, signs of low iron? Losartan?

Ari R. Pelcovits, MD 44:19
Yeah, so I think there's the ones that are the most generic and then can be anything. So that's the fatigue, tired, low energy, just feeling kind of off and not not quite like yourself, but that can be 100 million different things. The one that's the most classic that we have a fun medical term for is called pica, which technically meets eating things that are sort of not foods. So the classic example in the old textbooks would be like eating dirt or clay, but the way it typically manifests is ice craving. So my wife who had low iron this was like her most classic symptoms, she would just chew and listen mounds of ice that drove me insane. And then she finally got an iron infusion once and it was like, you know, within a few weeks, she just like, suddenly one day was drinking a glass of iced water and went, Oh my God, I don't want to eat this ice anymore. Yeah. So that's almost, we have a fun word for that. pathognomonic which is, you know, if you're sitting there chowing down on ice, and you can't stop, it's almost certain that you're gonna go find your, your irons low. The problem is a lot of these other symptoms are really nonspecific. And so it takes, you know, your doctor as part of their battery of tests, including that iron level to check.

Scott Benner 45:32
So I, before I realized I had a problem with my iron, I actually bought my own icemaker because it was, I had to chew the ice. I was hydrating myself through ice, I believe. Yeah. And my hydration has gotten worse since my irons gotten better.

Ari R. Pelcovits, MD 45:51
Yeah, no, no, that's literally my wife said the exact same thing. Yeah, like, I don't drink water anymore.

Scott Benner 45:55
And then when my iron came up, not only did I not want to chew ice, but chewing ice, like turned me off. Like it almost sicken me a little bit. I was like, Oh, I don't want like, this is not a thing I would do if I wasn't getting that drive. Do you understand the? Like, what's the functionality behind that?

Ari R. Pelcovits, MD 46:13
very unclear. You know, one of these things go it's funny, right? When when we feel like something's unclear. We're okay with it if it's coming from the doctor side, but yeah, so So, so, so pretty unclear why you got this craving whether, you know, I think there's probably if I remember back to what I was taught that the thought about like, these, like clay, your dirt cravings was like you literally were trying to search out the iron there. But certainly that makes no sense with ice. So who knows?

Scott Benner 46:38
Yeah, it's I can tell you it's as real as could be, though. I know. Yeah. It was for me. Alright, so if people are having the symptoms, right, they're there, they can't get rested, no matter how much they sleep, they're weak. They are dizzy. Brain fog, chewing ice. I mean, if you please, if you're out there chewing dirt in your backyard, please give us

Ari R. Pelcovits, MD 46:59
a lot of maybe a few other things we did to work.

Scott Benner 47:01
Yeah, go see a doctor. And, but And so anyway, I go to the doctor and they run. The first thing I've learned that you have to be careful is you have to ask for a full iron panel. Is that right? And?

Ari R. Pelcovits, MD 47:13
Yeah, so there's lots of different values, there's sort of five and particularly we look at and I would say the ferritin is by far the most important. So if they're going to take check one thing, it would be the burden. But all of them together can be helpful to sort of really make sure we have a full picture.

Scott Benner 47:27
What is iron binding capacity?

Ari R. Pelcovits, MD 47:30
Yeah. So that is a way for us to measure sort of how hungry your body is for iron. So typically, when you're when your iron is low, your iron binding capacity is going to be high. So it means you know, your your capacity to have more iron, your desire for more iron is hot, you want more,

Scott Benner 47:48
okay? Because I because that always confused me. They're like your iron binding capacity is high. And I'm like, Well, hi. Seems good, don't we? Right? Right. Right, right, right.

Ari R. Pelcovits, MD 47:57
Where these things can be helpful is sort of your ferritin. Other things can impact it. And the most common thing is sort of inflammation. So some people's ferritin might be what we call falsely elevated. So it looks it looks normal, or it's even a little high. But really, they are iron deficient. And so these other numbers can help us sort of tease that

Scott Benner 48:16
out. I think that's a another thing, especially for people with auto immune, that's important for, for your doctor to understand. Because if you're sitting there at a fair ton of 25, and it may be higher than it actually is, you probably are in trouble as far as needing more. And I'll tell you, mine has been as low as seven. Like that's when I was falling over. It's seven. Yeah, yeah. The last one, I think was 13. And I was I was on my way to not doing well. But it's funny how it's almost like it's almost like driving a car and running out of gas. Meaning your tank can be completely low. But as long as the hose leading to the motor still full, you're running like everything's great. And then when it's gone, it's gone. And that's that's how I feel like I imagined if I looked back, and I very carefully looked, I might see it coming on, but it doesn't, but it comes on so creeping really slow. That is just like I'm fine. You know, I feel a little tired. And you know what, for me, it's like, why are my nails breaking? And then boom, I'm shutting off what they see the nails breaking. I'm calling the doctor like, hell do

Ari R. Pelcovits, MD 49:27
you have do you have like scheduled lab work that you do? Or is it you just wait until you're feeling this way? Yeah,

Scott Benner 49:32
so we just started talking about that. Because it looked like it was gonna you know, at one point he was very hopeful that you know, supplementing was going to be okay, but at this point now, I'm just gonna get it drawn every six months. Yeah, and see where I am at the problem ends up being his insurance. So you know, you want to be again the people say this about the American healthcare system all the time, right, like, like you want to be pre emptive but the insurance is like no, get the lab values lower and then we can do it. Right So after I feel like I'm gonna fall on my head, then we'll get right to it. Thanks a lot. But we are going to, we are trying to push them in that direction. So we'll see what happens with that.

Ari R. Pelcovits, MD 50:13
Yeah, that's good. That's what I try to do. I try to keep you know, especially people early on where I'm not sure was this sort of like a one off bleeding event or something happened that decreased your absorption, and then we're going to be fine. After we take you up. You know, let's check bloodwork every three to six months. And then we can see how you're starting to drift. You know, let's get ahead of this. Because I know how bad you felt. Let me let you get all the way down. Yeah.

Scott Benner 50:33
Oh, it is my goal not to feel that way ever again. Like I tried to stay ahead of it. Because I also don't know what else it's impacting. And yeah, there should be other stuff. And you know, you brought up I brought up earlier, like I said, like, I don't want to have a heart attack. But I am adopted, but I know very little about my birth mother. But here's something I know about her. became depressed after she was kind of forced to give me away by her family was morbidly obese after a number of maybe 1520 years and died of a heart attack trying to have bariatric surgery. Oh, God. So terrible outcome, obviously. But I just like I'm not, I am trying to avoid that, you know, and by the way, I'm not. I guess by the charts, my BMI is high enough that my insurance company was like we go over. Sure. No problem. But But visually, I don't think you'd see me that way. Yeah, and I am. So I don't know if I'm carrying it, some of it under my muscle. Like, I don't know what it is. But I just I'm not doing that. Like, I don't know, I've worked too hard to get this far. Like, I'd like to get to the end where I get to poop on like nurses in a home. And that's your goal. They have to smile and be like, It's okay, Mr. Banner, and so that they have a story to tell when they're 30. They're like, Oh, my God, I had a job when I was 18. Holy Hell, let me tell you about it. I'm trying to build resistance in the younger people already. That's but But seriously, like, I'm just trying to, you know, I've had a real, like, kind of renaissance in my thinking about age, because my mom got cancer. And she's doing well, but she got it at 79 years old. And some will argue that 79 is pretty old to begin with. But I've seen it, I saw how it kind of added 10 years to her, you know, name Yeah. Oh, yeah. And, and I just started thinking, like, you know, when we, at our age, think about living forever. I'm like, I'll probably lived on 8590 years old. But you imagine yourself as 85 now, like how you are now but that is not how it goes. And so what I told my wife is after I watched my mom with her cancer, I said, I'm going to I'm going to live like these next 15 years for the last 15 years I'm getting. And I don't imagine I'm dying at 65. I hope I don't. But I don't know where I'm going to start declining after that. And I'm like, I'm not going to just, I'm not just going to keep living now, like these other years are promised to me. But in the shape I'm in now, which by the way, I think we've just discussed for the last hour, it's not. It's not optimal. Right? So I don't know, I'm just trying to I raise my No, I

Ari R. Pelcovits, MD 53:22
think the privilege of being a doctor is that even at a young age, you get exposed to a lot of morbidity and mortality, you see a lot of people who are sick, and a lot of people die. And a lot of people who who gets to be you know, old and live well. And in it, it forces you to think about a lot of this and try to prepare yourself in different ways for that sort of, you know, outcome because I think some of it, like you're saying is, is how can I live the best I can now to be as healthy as I can at that point in my life. But the other is that, you know, it's an inevitability and not to be too depressing, but it's how do I psychologically come to terms with the fact that no matter what I do and how well I live, even if I get to 95 or 105, there's going to be a moment where my body will give up on me. And what do you do with that knowledge?

Scott Benner 54:12
I'm some days I'm stunned. I'm this old. I mean, seriously, you know? And yet, it's funny. As ridiculous as this sounds, aside of the things that I've shared here today, my vitality is like terrific. And like my mic when my iron is fine. My clarity is crazy. I am one of those people I wake up I am me from the second I opened my eyes to the second I go to sleep, like I don't know, you know what I mean? Like

Ari R. Pelcovits, MD 54:39
and you know, and I think that's the other thing that's important when you're going to the doctor and you're kind of trying to figure out you know, how to how to get worked up for these symptoms and treated you know, the other thing we sometimes do that's not great is you know, when I meet someone, this is the only time I'm ever gonna see them that are that first time is that first moment in their life. I'm meeting them and so you know, I sort of trying to make it clear what your sort of normal baseline is like you're coming in and you're saying you're sick, but I don't know what a good day is. And sort of highlighting like, no, look, I can I can be running constantly, when I'm feeling well, like this is abnormal for me. And trying to make that clear, can I think help sort of get some urgency or make people think like, well, we got to figure out what's going on. I don't want to just sort of blame this on, you know, you're just getting older or, you know, yep, some days, you know, you feel kind of down. Because I think it's easy to do that and harder to maybe think a little more and try to figure out what could be happening.

Scott Benner 55:33
Well, I'm very glad you brought this up, because it was going to be my next question. So how do people come to there? First of all, you're gonna end up at your GP first with these complaints, right? And then you're gonna see, you're gonna see the iron, or the ferritin, or the iron binding capacity, you're gonna know a little bit because you listen to this journey back. Oh, that's not right. Your GP is going to be like, that's fine. Because you don't know, or she don't know, doesn't matter. And so I tell people all the time, I'm like, stop banging your head against the wall with your general practitioner and find a hematologist. Now, it's hard to get in with a hematologist. Yeah, you know, and so don't delay. But then once I finally get in that office, what do I tell them so that we actually start moving forward from there? And I don't get ignored? Like, what would? What would really pique your interest?

Ari R. Pelcovits, MD 56:24
Yeah, so I think that what would make me convinced that we should try something is, if I can be, if I can hear that, you went from feeling good to not feeling good. So there was a change in your symptoms. And that the only thing we now can ascribe this to is this lab finding that your iron is low, or you're anemic? You know, I think what makes people sometimes they'd be hesitant is, you know, you know, I've kind of felt this way for 40 years now, certainly, it could be because your iron has been over 40 years, and nothing's happened to it. But usually, what's going to push them over the edge is that this is new, you know, in different than what I felt like before, how can I now kind of try to feel better?

Scott Benner 57:05
Yeah, I also think that there's more light bulb moments for people because of the way information is getting shared now, like, you know, because of something like this, like, somebody's gonna listen to this and be like, Oh, holy hell, I felt like Scott my whole life, I didn't know, you know, what you mean, like that is going to happen, and you have to just be able to come in to the doctor, you know, my finding is, you come in, you'll lay yourself out, you know what happened, I like to write it down. Because you can get in there and start telling stories. And that's not helpful. And the doctors looking at you, like, you got eight minutes to get to this, because I'm out of here, you know, and like, you need to be able to come in and say things, like, you know, I'm noticing this and this and this, and this and this, and then let them ask you a question. Because if you lay it out, well, then you've laid out, Hey, I think I'm anemic. Or I think my heart is low. And it's really, it's impacting me, then let them ask a couple of questions, answer them. And, and then for my money. I think you say it out loud. You say, I have been supplementing orally and it's not working. I really would like you to consider an iron fusion for me.

Ari R. Pelcovits, MD 58:19
Yeah. No, no, I think that's key. Also, sort of, if you've done the work of I've been on an iron pill for, you know, 234 or five months and look, my numbers haven't changed. This isn't working. You know, I will say there are some general practitioners who can schedule iron infusions. So we do see that sometimes. And unfortunately, probably, although I know you were just supportive of getting us over to specialists and as a hematologist, I should support that. But you know, I think you know, some more you know, well versed primary care doctors probably feel comfortable doing this themselves saying, you know, let's try the oral iron for a little bit. Let's refer you to the gastroenterologist to make sure you're not bleeding. And then you know, this isn't working let's try IV iron I can find the clinic and get get the order in for you.

Scott Benner 59:03
Oh, listen, I first of all, I would take that I would take that order from any doctor who was my dentist would write it for me I would have been like, that's cool. Let's go you know, I am I am interested by the progression though. Because I come in like and I tell you, hey, my iron bla bla bla bla bla, especially for me, this has been happening my whole life. Like, you think I've got the kind of cancer that doesn't kill you in 25 years. You know what I mean? Like, just give me a I look back on that initial situation. They could have turned me around in two weeks with an iron infusion and then gone and looked up my ass if they wanted to. But like Why leave me on death's door to do it. That I never

Ari R. Pelcovits, MD 59:48
again not knowing the specific not not not wanting to you know, totally speak speak ill of my colleagues. But I think you're right. There's no reason those things can't happen simultaneously. So if I see someone for low iron, you know, anemia And they haven't seen a gastroenterologist yet. We'll do that. But it doesn't mean I won't give them IV iron. In the meantime, well,

Scott Benner 1:00:06
I got a little I stopped seeing the the one gastro doctor because I was like, just give me an infusion. Like, I figured this out already. I tried to explain to him, I'm a very, very popular podcaster. And I've already picked I've already picked through this, and I know what's wrong. But there's part of me that thought like, hey, oh, man, I can't bill you. For an iron infusion. The way I can bill you for a scope. So like, I didn't get that feeling a little bit. I was like, Yeah,

Ari R. Pelcovits, MD 1:00:32
I think that. Luckily, for the most part, we're sort of a lot of doctors are shielded from those sort of financial outcomes. So like, for me, for instance, like, I don't get paid more if I give you IV iron or iron pills, or refer you to 10 doctors or one doctor, like I get a salary. And you know, that that's so whatever I do in my clinic doesn't matter. And more people are moving towards that. Which is by far the best on some level to avoid these sorts of conflicts of interest.

Scott Benner 1:01:00
I hope so. I hope so. Because in my mind, there's a boardroom full of guys smoking cigars going our recent murder.

Ari R. Pelcovits, MD 1:01:07
Well, listen, I'm not going to be naive, there was a lot of financial overlap in the practice of medicine that leads to some just some bad bad choices from different parties. So you know, money, money plays a big role in medicine. Let's not pretend that

Scott Benner 1:01:22
isn't the case. No, of course. And I just think from a personal level, and by the way, because the audio problems, we had your overtime, are you okay?

Ari R. Pelcovits, MD 1:01:30
Yeah, I have a patient at a lab, and I just make sure they didn't decide to come early. Well, they did. But they're okay. They haven't got.

Scott Benner 1:01:39
Alright, we'll just let them sit out there a little longer, though. Because I just wanted to ask you like one last question. Well, first, I'll say what I was gonna say, they'll ask you the question. So what I was gonna say is that, you know, all these technical things, and insurance and everything aside, like, I felt terrible, I lost a significant time and quality of my life feeling like this. So anytime, as a doctor, you're letting somebody feel like that longer than they should. It kind of sucks, you know. But So my last question is, what did I not ask you that I should have asked you about that people should be hearing about this.

Ari R. Pelcovits, MD 1:02:15
You know, I think that you sort of, I think hit it right there, which is I think the job of a doctor is to help you live longer and live better. And so I think that what you have to try to hope is that you and your physician or your you know, PA or NPU, or nurse, whoever you're seeing are on the same team to accomplish that, and aren't working against each other. I think when you have a good relationship with your practitioner, that's what it feels like. And so it shouldn't be that, you know, you're fighting against each other to kind of get to these outcomes, like you said, like losing that time. I think, on some level, part of it is I think we practice a bit of defensive medicine or, you know, we're thinking like, we don't want to cause harm. So let's avoid all these things, which which is important. But we can end up causing harm by not providing people the things they need. Yeah. Not not to leave you just to I guess, you know, I will say to just sort of err the other side of why do we maybe sometimes want to avoid IV iron and probably some of my colleagues who are a bit older than me, and I've been doing this for longer, but I have seen someone have a bad outcome, like get IV iron and actually have such a bad reaction that they needed CPR. So you can you can cut them out if you want. So if you don't want to scare your listeners, no,

Scott Benner 1:03:35
I understand why you that's why they give you the Benadryl right, because you have a reaction to it, it's gonna be a bad reaction. I gotta be honest with you, though, I was gonna need CPR and a couple more weeks anyway.

Ari R. Pelcovits, MD 1:03:45
But I will say when I when I when I saw that happen, it definitely scared me for a little bit. And I am sure that after, after experiencing that, you know, I then was probably too hesitant and giving more people iron. And I think I've now come back to a better place realizing, hey, look, that was a really rare situation. And it doesn't mean that I should be letting other people suffer because

Scott Benner 1:04:06
of Yeah, listen, I would have shoved a rusty nail under my skin. If you would have told me it would have helped. Like, that's how bad off I was. I was just like, I was lost. You know, and, and I want to be clear, not just fading, like I admitted myself to an emergency room. Like, like, I was done. I was like, This is it. Here we go. Like give me iron or like it felt like my heart was gonna stop. Like when it got low enough. It was just really I don't know how to put that feeling. But I was I'm not a panicky person. I wrote it forever. I did all the things I was supposed to do. You know, I took all the steps and I was just like, my body's shutting off.

Ari R. Pelcovits, MD 1:04:43
So I wouldn't what I'd also say, though, I guess is to add and I think we did cover this before but you know, having not everyone's gonna have that dramatic response like you did. And so I think so but I think just being ready for anything, right? Like saying like, I'm going to try this. I'm hoping it's all was my problems? And if it doesn't, the answer doesn't necessarily mean you know, give me another another dose. It means that look for what else could be causing Oh, for

Scott Benner 1:05:09
sure. I mean, if you were to get an iron infusion and nothing changed in, I'm saying six weeks, what do you think the longest is this?

Ari R. Pelcovits, MD 1:05:16
Yeah, I would say it depends on the type of irons. I don't know, if you've gotten sort of these, you know, what's called in fed this sort of big large dose at once. Or the sort of other common one we use is venofer, which is smaller doses, and you got to come like once a week for four or five weeks. I

Scott Benner 1:05:29
don't I don't play them better for bullshit. I do. I do injector for twice.

Ari R. Pelcovits, MD 1:05:35
Okay. Okay. So, so yeah, so so if you get, you know, a pretty hefty dose, but you're only needing it once or twice. And when by six weeks, you should be feeling feeling the effects of it.

Scott Benner 1:05:45
Yeah, I was once on the phone with insurance company. And they were like, We're gonna give you a benefit because it's cheaper. And I'm like, No, you're not.

Ari R. Pelcovits, MD 1:05:52
Well, right now we're actually having a problem. We're having a shortage of some of the what, in fact, is what we use, which is the big dose and so we're stuck with menopur. For a lot of people.

Scott Benner 1:05:59
I have it here in the house. It's my closet full of it. That's why I can't find any of it. But yeah, just I didn't like they I think it was like six weeks and like you want me to get an infusion six weeks in a row. And I was like, come on. Yeah, I know. I pulled out of it. But anyway, this was terrific. I can't tell you how excited I was to talk to you.

Ari R. Pelcovits, MD 1:06:22
And you know what, it's not a topic that people always are super excited about talking about. So it's great to find someone who is

Scott Benner 1:06:27
you kidding me? I'm gonna have you back someday. Amazing. I again, I can't thank you enough for doing this. I really do appreciate it.

Ari R. Pelcovits, MD 1:06:35
Yeah, no, thank you so much for having me. And thanks for everything you do. It's been it's been a huge resource for me for this new diagnosis. So Oh, my appreciate it. Oh, yeah.

Scott Benner 1:06:43
If you want to say something nice about me. You can do that at the end.

Ari R. Pelcovits, MD 1:06:46
There you go. I think I think you got it. You've helped you. Yeah, yeah.

Scott Benner 1:06:50
Hold on one second for me. Okay. Sure.

Hey, how about a huge thanks to Ari for coming on the show and sharing so much great information with us about anemia and ferritin. And thanks also to touched by type one.org. Head over there and check them out touched by type one.org 10% off your first month of therapy@betterhelp.com forward slash juice box 35% off your entire order at cozy earth.com with the offer code juice box at checkout, and a free year supply of vitamin D and five free travel packs comes with your first order of ag one from athletic greens at my link athletic greens.com forward slash juice box. Go check out the private Facebook group. Thank you so much for listening. I'll be back again very soon with another episode of The Juicebox Podcast.

#887 Blackberries to the Rescue

Liz has a son and husband with type 1 diabetes. We discuss parental pressure, seizures from low blood sugar and more.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 887 of the Juicebox Podcast

this is quite an episode I'm going to be speaking with Liz. She is the mother of four children. One of them has type one diabetes. Her husband has type one diabetes, her son has a thyroid thing. And she's got a bunch of different stuff that we don't really get to until later in the episode. It's very, very interesting. I wasn't quite sure what to call this, this little ditty between me and Liz. So, even at this moment, I'm not sure what the title is gonna be. You'll find out when I do. 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 health care plan. If you have type one diabetes, or are the caregiver of someone with type one, and you're a US resident, please consider going to T one D exchange.org. Forward slash juicebox and completing their survey. Your completed survey helps type one diabetes research to move forward. It may benefit you and it helps support the podcast T one D exchange.org. Forward slash juice box. This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also brought to you today by the company where we get Ardens diabetes supplies. That company is called us Med and you can get started with them right now at us med.com forward slash juice box or by calling 888-721-1514 Getting your supplies does not have to be a hassle. Try us met one more sponsor today cozy earth.com My goodness, I am actually wearing oh I'm wearing at all right now I'm embarrassed I'm wearing. I'm always wearing them when I'm doing these ads. The joggers from cozy Earth and I've got the hoodie on today. They're both super soft, very comfortable. And incredibly. I don't know I'm never too hot or too cold or them. I don't know what to call that. We also have sheets from cozy Earth. And I'm thinking about maybe ordering the towels, you should check into them as well see what you think cozy earth.com All By the way, if you make a purchase while you're there, everything on the website is covered by this offer code juice box at checkout and it will save you 35% That's right, you can save 35% at checkout at cozy earth.com with the offer code juicebox.

Liz 3:05
I'm Liz and I have four kids. I live in Canada and my oldest son has type one. He was diagnosed when he was 12 months old. And he's 15 now and my husband also has type one he was diagnosed after our son was

Scott Benner 3:23
do you want to hear something? Bizarre? Yes. As we started to record which I can probably leave in you said that you played the violin. Is that right? Yeah. Yes, your husband plays trombone. And then somehow when you said you were from Canada, I was like they have music in Canada. That's it wasn't like a full thought in my head. It was just sort of like, oh, no kidding.

Liz 3:47
Level your eye level your Canadian jokes. Whenever there's a Canadian cast on.

Scott Benner 3:51
I wish I was joking.

Liz 3:55
It's, it's funny, because, you know, we, we do this new music festival every year in February. And a couple years ago, they actually had a like, it's really cold here in the winter, it gets like 30 minus 40. And so they had an outdoor concert with like ice instruments this composer had anyway written stuff for percussion with ice. And so just if you were gonna say how do you play your instruments in the ice while it has been done?

Scott Benner 4:29
I'm just gonna tell you, none of that surprises me what you just said. You know what I mean? Because when you're, I mean, if you were stuck in your freezer all day, eventually you would start making sandcastles and the ice cream. There's nothing to do. I mean, what do you like when you my brain pictured an iceberg with a person with a trombone standing on it? Do I know there are no icebergs in Canada? Sure, but that's not the problem for me.

Liz 4:54
Yeah, we're just like we're right in the middle of Canada. So yeah, no icebergs here but the rivers race.

Scott Benner 5:01
I grew up in the 80s, too. So basically, I have Bob and Doug McKenzie in my head. Right? I have ice. And then the idea that I don't know anywhere except for where I live. So in my mind you just live in a wasteland. I'm, I'm amazed. There's buildings there. What do you think of that? I just, well,

Liz 5:21
I'm I'm not from Canada. I'm from Washington state. So I'm still not used to the winter.

Scott Benner 5:27
That's the dorm. And I actually have Canada though, was honestly.

Liz 5:33
It was the most ridiculous thing is I have a cold allergy. And everyone always says that I'm just, you know, joking. But it's true. Like I have, it's this thing called cold urticaria, where I get hives and the cold.

Scott Benner 5:46
Makes it just leaving. Me I suggest leaving.

Liz 5:53
I know I should. But it's like it's where we both have our jobs. And, you know,

Scott Benner 5:58
you hear you get hives in the cold. Yeah, consistently, or is it come and go over days and over the year?

Liz 6:07
No, it's pretty consistent. I mean, I, I found out when I was in university, I was in Ottawa, and I was walking, there was this big ice storm one year and I was walking across the bridge, coming back from a concert, and so it was getting pelted on my face with these ice crystals. And then I got home and I like my whole face was broken out into hives, and I thought it was just an allergy to a new cream I had or something. Anyway, and then I was getting hives all the time. I didn't know why. And then I finally went to an allergist and he I told him that and he's like, Oh, well let me do the cold tests on you. So he held an ice cube against my skin and he's like, Yep, you're allergic to

Scott Benner 6:46
the cold. Alright, Liz, you've said so much here. We're never getting to your kid. First of all, leave it to a doctor. I'm making quotes around doctor in Canada. Right? Let me do the cold test. He holds an ice cube to the cold test. It's not a cold test. You're holding an ice cube on me. And I actually I also I was good guy. What do you got to say about that?

Liz 7:07
I was in this I was in the States I had come back. I'd come back home for the summer something winter. I can't remember Christmas vacation something So to be fair, the allergist was in in the States so

Scott Benner 7:20
you know it's funny when you tell me the allergist was in the States then I just think we've got meth head doctors all over the place. But when it happens in Canada, I think you found a guy who people just go to you don't I mean like he lives in a hut he's like He seems to know what's wrong. My bigger concern here is that you I don't think you have an allergy to the cold I think your body is just smarter than everyone else's. And it's really tell you why do we live here you have to move south.

Liz 7:47
So highly evolved? Yeah, I'm gonna go with that.

Scott Benner 7:51
Listen, that's what I would do your ever your thyroid checked.

Liz 7:56
Um, yeah, it's been a while. I think my doctor just ordered it but every time I've I've had it checked. It's been fine. But my so my son who has type one he has hyperthyroid.

Scott Benner 8:11
What would you say? Your your thyroids? Fine. What is your TSH come back? Well,

Liz 8:16
I know because so the last time I got it checked was probably before I heard all your thyroid episodes. So I do want to know for sure like this next time, I will ask her I'll be more specific.

Scott Benner 8:28
Um, say yes, I want your thyroid around to or under than I want. Yeah, outside. Again. We're gonna throw ice cubes at you and see if this urticaria comes back.

Liz 8:38
But I mean, I've never heard that with. I mean, I know there's cold sensitivities with with thyroid, but are there hives that appear?

Scott Benner 8:46
Listen, with only way I know this is because we figured out my son has Hashimotos because of hives, but it was heat.

Liz 8:54
Okay. Yeah. So you know, every once was so I would say like the first time I'm exposed to like the hot the first hot day if my skin is out, you know, like, say like my, like the upper part of my chest or my hands. I will get a little rash from the sun. So maybe I'm gonna get yours. I think I'm just sent I'm supposed to live in Washington state where it's mild and

Scott Benner 9:23
not hot. Not cold. There's no sun. Yeah, yeah, yeah. I visited once, which you might know from listening to the podcast, and it took like five days for the mountain to come out which is kind of forever cracked me up but that was the verbiage they use to describe that it was cloudy. Yeah, I think I did hear that. While the mountain comes out. I was like what are these people talking about? I used to think so when you hear me speak oddly. Couple of things. I'm from around the Philadelphia area so I miss pronounce words but Also my grandmother was Pennsylvania Dutch, which might not be something that most people understand. I don't think I've ever said this on her. But she spoke backwards is the best way I can say it. So the explanation that's very simple, is that if you had a fence, and there was an animal on the other side of the fence, a cow, and the cow needed hay, and my grandmother was going to direct you to throw the hay over the fence to the cow. She would say, throw the cow over the fence some hay. And that was just how she spoke. So I don't know why. Maybe she was only a generation removed from people speaking German. I have no Yeah,

Liz 10:44
right. Yeah, that must be. Yeah.

Scott Benner 10:47
But anyway, it's permeated how I speak. Because I speak backwards constantly. Like when I write a sentence, I finish it and then I go, Oh, the second part should have been at the beginning. It's ridiculous. Not as ridiculous as going out in the cold when your body doesn't want you to and then living in where are you in the Yukon or something? Would you say the middle of the country? No, we're

Liz 11:10
in we're in Winnipeg.

Scott Benner 11:11
I like how you said no, you're like, No, I don't live in the EU ridiculous person. I live in Winnipeg. How did you end up in Canada is this boy you met from Canada?

Liz 11:24
He is. I ended up going to Ottawa for university. I had gone to Michigan for my last year of high school. It was an arts academy that out in the middle of the woods.

Scott Benner 11:38
Just say you were smoking weed. What are you doing an Arts Academy out in the woods is that?

Liz 11:43
I mean, it was. Yeah. It's called the Interlochen Arts Academy. And it's, yeah, it's just a an art school. So there's there's a summer camp. And then there's the the academy. So I went from my last year of high school. It's basically just like, you know, violin lessons and orchestra.

Scott Benner 12:04
Yeah. And you saw his trombone. And you were like, Oh, I have to be with this person.

Liz 12:10
I didn't know. And then so I ended up going to Ottawa for university. And then from there, I I got, I just ended up getting this job in Thunder Bay, which is a super small town in northern Ontario. And then he was he was there, my he's also from Ontario. But he was there my first year of the orchestra. And then he moved to Winnipeg, and then a couple of years later, then we then we got together and then I moved to Winnipeg,

Scott Benner 12:41
was you tried so hard not to tell me something just then I don't know what it is. But it's okay. You're like, you know, and then and then he was there. But what what is it that he then did? He got me pregnant? What do we later, by the way, it sounds like a sci fi movie. You're like, I went from Winnipeg to Thunder Bay. These are not real places. They're just they can't be It's alright. Let's get past. All right. That's fine. Real quickly. You've seen this sled dog work?

Liz 13:13
I have I have actually done it in Thunder Bay. I've been missing or whatever you call it.

Scott Benner 13:23
Alright, that can't be what you call it. But we'll find out about that later.

Liz 13:26
I think it is. I think look at look it up smash. Possible. No

Scott Benner 13:29
one cares about Canada, more than me. And I've never seen it and I will never see it. Isabel's, like, are you ever gonna come to Toronto? Like no, like, god? No, you shouldn't? You should? I'm sure it's lovely. What am I gonna do? I can't get out of this house. You guys want this podcast? This is how it has to be. I die in this room with? Do you know yesterday, I contacted the hosting company who hosts the files for the podcast. So I pay somebody to keep the file. So you guys have access to them, right? And I said, Hey, if I die? How do I keep my podcast alive? And the person responded and said, in the event of your passing? Have someone contact us? And let us know that you've passed away. And we will continue to host your podcast for free. And I was like, Oh, that's very nice. Because then, you know, the protests will still be out there. And anyway, I got I don't know what happened to me. I got melancholic yesterday. And I'm like, What happens if I die? And I didn't ask Google or God I was asked the guy at Libsyn

Liz 14:40
Well, it's you know, it's a legacy either. Either way, I mean, it's Yeah, your your podcasts is amazing.

Scott Benner 14:49
Oh, thank you. So alright. I'm getting back to the trombone at some point, but not right now. So the this boy that you marry, he has type one diabetes.

Liz 14:58
He does. Yeah. So He and he was diagnosed after our son, which I feel like, probably saved his life. You know?

Scott Benner 15:08
I thought you're gonna say bait and switch. You're gonna say He tricked me into marrying him. And then he got

Liz 15:18
no, I was just gonna because he's not wanting to go to the doctor if he's feeling sick, you know, like,

Scott Benner 15:23
Oh, I see, I see you. So I think

Liz 15:25
knowing him knowing the signs is what made him figure it out. But yeah, it was bizarre. He he hadn't told me that he was even feeling off or sick. But he said that he was. I don't know, for like, the last month or so he thought that he had something really wrong. Like, I think deep down, he knew it was diabetes. But, you know, part of partly he was thinking he had cancer or something, you know, and then Excuse me. So the first I knew inkling that there was anything wrong. And so you taken a nap in the afternoon and he he got up and he's like, I think I'm gonna test my blood sugar. And I was like, okay, that's kind of weird, you know? And he said, he knew as he was waiting for the beat, you know, for the number to show up. He's like, for sure. I'm gonna have it. And I was like, 24 or something.

Scott Benner 16:15
It just seemed like it takes longer when your blood sugar's higher, doesn't it?

Liz 16:18
Yeah, yeah. It was probably, you know, one of those old meters too,

Scott Benner 16:22
right. But no, that's not actually accurate, but it feels like it like. Yeah. Okay, so wait, your son's diagnosed at 12 months? He's your man. He's your first child. Is that correct? Yeah. Okay.

Liz 16:37
Yeah. And that his Yeah. And his story. I mean, that was one of the reasons. Like he has an interesting, I guess. Interesting diagnosis story. So at four months old, he started being followed by miss my brain.

Scott Benner 17:02
Moose and squirrel.

Liz 17:05
He just literally lost all my all my words.

Scott Benner 17:08
Okay, take. Hey,

Liz 17:10
neuron, not a neurologist, but a brain surgeon. What's the thing that I need? Apparently,

Scott Benner 17:21
I know what your son has. And I feel terrible laughing right now. So now I know you're laughing at me. So the guy from let's start over the guy from Grey's Anatomy, who's married to Meredith Grey, who eventually dies in a car accident? He was a neurosurgeon. Is that correct? Yes. Neurosurgeons that sort of thing is that is was following your son since he was four months? Yes. Yes. Thank you. No problem.

Liz 17:46
Um, so anyway, yeah. Cuz his head was his head was growing at an alarming rate for a baby that four months old. And so anyway, they the diagnosis was he has hydrocephalus, and it would just extra water, extra fluid around the brain. And it's dangerous, because if, if there's a blockage and the fluid can't freely, you know, go up the spinal cord up and down, then it will create pressure on the brain. And he needed emergency surgery to get a shunt put in, and he would basically have that for life. And so it was, you know, sort of stressful having your first kid and they gave us this long list of side effects that we had to watch out for. That would clue us in that he would need to have emergency surgery. And so it was, you know, extreme fuzziness, lethargy, vomiting, all these all these things. And so, so many of them overlapped with the diabetes. So that's, that's how we missed we missed the diabetes diagnosis for as long as we did, but

Scott Benner 19:05
how long do you think you? You didn't say it?

Liz 19:08
I feel like he was he was definitely sick the month before his birthday. And then it was, it was a pretty, I mean, it was kind of probably slow at first, the decline, but then the last couple of weeks, you know, it was obvious there was really something wrong with them. But yeah, it was super stressful, because, you know, he was he was a fussy, fussy baby. And so every time he would cry, I was like, Is this his head, you know, is this and then we he also had undiagnosed food allergies. And so that was making him sort of spit up his food all the time and throw up all the time, but we didn't know that he was allergic to food. So yes, like, peanut tree nut, egg allergy, so probably when I was breastfeeding, so probably every time I was eating nuts or eggs, it was crazy. Seeing this issue in him, but yeah, anyway, so at around, I don't know, I'd say the month before his birthday, he started to get a little sick. And it was fluid like he's born in November. So it was sort of flu season cold season. And at that point he was, you know, he was a pretty happy baby, aside from, you know, bouts of bouts of fuzziness, but, you know, he was walking and not walking, but crawling, cruising along furniture, you know, holding on to stuff and, and crawling all over the place, you know, pretty active. And then, as he sort of, as he got sicker, he just basically stopped doing everything. Like he would sit on the floor. I give him some toys, and he kind of like, halfheartedly play with his toys, and he was extra fussy sleeping more. And so I was calling into his doctor's like, you know, there's something wrong with him. And he's like, Well, he has his doctor was great. Like, he was calling actually to check on him. But he was like, he has an appointment. And I think it was two weeks. So oh, okay, sorry. Let me back up. So we did bring it when he started to sort of show these signs we brought him in, and they did a CAT scan on him. And they're like, well, there's no change with the fluid. So his heads, okay, right now. Just keep a watch on them. And so we brought him home and, and then he started to get worse. And his doctor was like, well, it's flu season unless he has a fever. Don't bring him in, make sure he's getting lots of fluids, lots of fluids. So I was pushing the fluids. And of course, he was drinking at time. And like it was, it was so bad. So I would have to put him in his diet. Like for night, I would put him in his diaper, a regular diaper. And then I would put a cloth diaper and another like a cloth cover, like a waterproof cover. And he would still leak through those. But was my mom pushing lots of fluids. And I had also so I was breastfeeding still, but I was giving him formula, a little bit of formula. And then I switched to cow's milk right around

Scott Benner 22:19
with with

Liz 22:23
the formula. And then sorry, you just said very likes cow's milk. So that's why he's drinking so much. And that's why he's sweating this diaper. So anyway, so it was

Scott Benner 22:30
can you hear me? Yeah, obviously, you you've you blanked out from it. So I lost you after cow's milk. And then oh, sorry. No, don't be sorry. Okay. Cow's milk, cow's milk. Yeah,

Liz 22:42
so he was he was drinking, he was just downing these bottles. And I thought it was just he liked the cow's milk better than he liked your formula? Well, so yeah, yeah. I mean, here was still I was still breastfeeding too. But, you know, sometimes I give him the bottle formula. And but he would only, you know, anyway, so

Scott Benner 23:00
it really diapers. Before we move on? Can I can I stop to congratulate myself for a second? Earlier, I didn't ask you how often you had knots in your mouth. And I was really proud of myself. I wrote it down. I wrote down. I wrote down nuts. And they put a checkmark next to it. Like I did something good.

Liz 23:19
He needed a gold star for that. I

Scott Benner 23:20
mean, I really do. You've no idea how hard it is for me to rein in my stupidity so that we can make this whole podcast together.

Liz 23:35
I love it. You're like, before you go on, I thought you're gonna tell me to adjust my mic or something?

Scott Benner 23:41
To let you know that. Yeah. Plus, we need to break up the story a little bit because it's, um, it's a lot and I want to make sure people have time to take it in. So yeah. So hydrocephalus, the swelling on the brain, not a curable issue, right.

Liz 23:59
Yeah. So I mean, we were we were expecting that we were he was gonna have to emergency brain surgery at any moment, you know. And so we had brought him in for the CAT scan. That was fine. And then over the next two weeks, he was like, in a, like a deep dive decline. And I was calling his doctor as I should bring him in. He's like, no, no, no, just keep giving him fluids. So anyway, we woke up one morning, and he was like, just completely limp like he couldn't support himself. His legs were just floppy. And he was, he was pant. He was doing that panting breath. I was like, Okay, we have to rush him in. And as we're packing up the diaper bag, he was he just started projectile vomiting all over the place. And we're so in our, in our minds, we're like, okay, he's, he needs a surgery. And so we rushed him in. We give him the rundown of what's happening and they're like, Okay, we're calling we're assembling the team. We're assembling the surgery team. We're gonna give them another cat scan and then And then brush him into surgery. And I was like, he just had a CAT scan two weeks ago. Is there another test that we're missing? Should he have a blood test? We have to hurry that. They just kept saying the team's assembling and, and so finally, I was like, just just give him a blood test. I don't know what we were looking for. But I was like, There's something you know. And so the senior doctor came in, he's like, Okay, well, I ordered the blood tests, and it came back that he has type one diabetes, and we're gonna say his head is fine based on that last CAT scan. So we've put him on a glucose drip and an insulin drip. And this is what so they rushed him up to the, the pediatric ICU unit. And he so he was there. He was in DKA. And he was there for a couple of days. And then they switched over to the regular regular Ward

Scott Benner 25:54
was when they were assembling the Superfriends. It turns out, you were actually Superman. How about that? Yeah, I

Liz 26:00
was. I know, but I don't know what I was looking for. But I was just like, it's just so weird that two weeks ago has had this totally fine and not totally change right

Scott Benner 26:12
seem so bad in just two weeks. Gosh, I wonder what would have happened to them if they would have put him under NDA.

Liz 26:19
I know. Yeah. Exactly. I mean, yeah. Some, you know, I feel like because he was he was doing that panting thing. And they said, they were like, he was hours away from going into a coma. And so it was so scary. Like, just the thought of you know, had it been overnight. You know?

Scott Benner 26:38
No, I understand. It's Yeah, it's crazy. It really is. Okay, so do the the two issues ever. They exasperate each other. Exactly. Oh, exactly. Where's the word I want? They make each other worse, or do they not intersect diabetes in the hydrocephalus?

Liz 26:59
Oh, sorry. We cut out there for a second. But were you saying to the two shoes ever? Crossover?

Scott Benner 27:05
Yeah. Yeah, actually, listen, I'm getting a weak signal thing from you once in a while. But that's fair. Because you live in Winnipeg. So yeah,

Liz 27:14
yeah. It's probably my house sometimes. Sometimes the Wi Fi is where my house

Scott Benner 27:18
itself you think it's

Liz 27:20
yeah, like where I live in this old this neighborhood with lots of old like 100 year old houses and I don't know what they're made out of. But if I'm making a call on my cell phone, there's only a few places I can actually just call out.

Scott Benner 27:34
Okay. Stand at that place while we're talking. So yeah, do they? Well, at first you miss me. Oh my God. Now we're gonna have to start over homeless like I tried to use I tried to use a word that I know what it means, but could not pronounce. So exacerbate? Yes, yeah, that's what I was gonna say. exacerbate? How come I can say it now. Okay. Anyway, I was I reached for that word couldn't find it, then you couldn't hear me. These two do they intersect with each other ever or? No?

Liz 28:08
No, I would say so. I mean, they basically, after a year they cut us off from I mean, he released us from his care. He said the only time you would need to see me in the future is if if he gets like a head injury.

Scott Benner 28:29
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I'm gonna get you back into the show. Before I do I want to let you know that Liz's son and husband have both had seizures from low blood sugars and we're going to be speaking about them. So get ready. Nothing crazy. I just wanted to let you know. Alright, let's get back to the show.

Liz 33:02
He would have more likely a likelihood of bleeding on the brain I think if he were to get a head injury, but yeah, so his head spin his head has been fine. And two months after that was when we found out that he had all those food allergies. Right.

Scott Benner 33:18
So So is has been fine. You kicked out for a second. And oh, sorry. No, no. And I'm wondering like visually looking at him since then you don't look and see that his head appears different.

Liz 33:31
No, I mean, when he was a baby, it for sure looked large. And he feels like he would say he's, he feels like his head is big. But you know, he's definitely grown into it. It's it looks he looks normal and fine. Yeah. I think it's probably something he might be self conscious about. But with your

Scott Benner 33:57
lesson, I don't have hydrocephalus list, but my head is huge. My head is like seven and seven, eight. Sometimes I see a photo of myself and I'm like, What in the hell? You know, like, why is it so big? And meanwhile, I don't, I'm sure I mean, you know what I mean? Like seventh and seventh, eighth, seventh and eighth, like seventh and eighth is a small hat. Like it's not, you know what I mean? It's not that vector. Not that much bigger. But um, okay. So it's something he's aware of, does it impact his life at all?

Liz 34:26
No, I don't I don't think so. Okay. No, it's yeah, it's just kind of something that he had when he was a baby. And he doesn't, I wouldn't say that he puts any thought into it. No,

Scott Benner 34:34
if he would have needed the shot, would that have changed his life significantly?

Liz 34:40
I mean, it could have I mean, I think it's one of those things where they can get infected and you can you have to have them replaced later, you know, so I mean, it would have its risks for sure. I mean, I think those I think those neurosurgeons are amazing, and they probably you know, could Do those surgeries.

Scott Benner 35:03
Yes. Fascinating like me, it's such a rare thing. I looked it up when we were talking about like 200,000 people a year are diagnosed with it, which is such a small number, you know?

Liz 35:12
Yeah. And they never knew if it with him if it was him just having an overproduction of fluid or if there was actually something blocking it, but they said the only way to know would be to go in and do surgery to explore. And they, they didn't want to do that. So and it could have it could have happened just as he was developing in the womb, or it could have happened, like we had I have kind of a crazy birth with him as well. Like he ended up having forceps and it was it was a bad delivery. But so it could have been something from that or it could have just spent genetic or something.

Scott Benner 35:49
They they were still using forceps 15 years ago.

Liz 35:53
Well, the doctor that I had, apparently, I mean, he was an old school, old school OB GYN and he was he was one of the doctors that you if you had him and you had a C section it was because there was something terribly, terribly wrong like he he was one of the few people that would

Scott Benner 36:14
still use forceps I think get it out like that. Yeah.

Liz 36:17
I think because, you know, so many, like a lot of people don't do that anymore. You know, because it's, it comes with its risks. But yeah, he was apparently a gifted forcep. Doctor. That's what I heard.

Scott Benner 36:31
You imagine, but that's a hell of a Yelp review. Yeah. Okay. Again, I guess have to say to you, please just why don't you just leave Canada, there's so many, so many things, trying to tell you to leave.

Liz 36:44
I know. I did switch to midwives after that. Because I was like that was that was pretty

Scott Benner 36:48
good. Just a bear. You don't even like whatever. Like anybody except the guy with the salad tongs who's like, Don't worry, this used to work in the 40s. And it works today. Come here. Oh my gosh, are Kelly's OB had zero personality. And the take on him from everybody in town was he'll get the baby out. Everything will be fine. It's going to be a smooth procedure. But he's going to appear to be mean for nine months while you're talking. Just he was just without any kind of bedside manner at all. Yeah. Yeah.

Liz 37:25
I mean, so started, like this guy was he was super. He was abrupt as well. Like, he was this old Irish guy. And he was he was lovely. But he was just so busy. Like, he would go up north and deliver babies up, up north. And he was always just like racing from one birth to another, you know, so he, he never He wouldn't sit and like hold your hand and say How are you doing? Are you getting along, you know. But then, I look years later, we ended up having a stillbirth. And he was my he was it was considered high risk to deliver that and he he was assigned to me and during that experience it he was completely different doctor so it was very interesting to see him change. You know, like when when he needed to?

Scott Benner 38:19
What do you pay him in like jerky and maple syrup? Like, is that how that works? You're like here like send him home on his like, yeah, yeah, this snowmobile with a bunch of stuff after you like he's like rips the babies. Like, here you go. Take this joy. Oh, thank you take our maple syrupy. And then he leaves. Yeah, I know. Don't worry. I understand what's going on. Also your your healthcare system. I am mad at right now. Because I know somebody who needs a procedure. And it's it's a simple thing. And it's taking forever. And so I'm mad at Canada right now. I'm having my own personal you know, thing, right? No one knows. Yeah, but

Liz 38:57
it can take a while for sure. Yeah, interesting.

Scott Benner 38:59
Okay, so I'm so sorry. So you had your son then the stillbirth was next.

Liz 39:05
No. So I had my son and then two and a half years later, we had another boy. And then two and a half years later a girl. And then a year and a half later was our stillbirth. And then so my youngest is four years younger than my daughter.

Scott Benner 39:26
I see. I have to tell you, you really wanted more kids because that story between the hydrocephalus and the diabetes. I don't know how you did it again. Like I know.

Liz 39:36
People have said that like why did you What did you have more but honestly, you know, all the babies after him felt so easy, because there was my second baby was like, well, you're crying because you're hungry, you're tired and you're just you're not sick. So the amount of stress that was lifted after you know knowing that they're they're healthy

Scott Benner 40:00
Right. So he gets type one. In this incredible scenario, how long was he in the hospital?

Liz 40:08
I feel like it was only about three, three days or four days. I mean, he was in the, the ICU for two. And then they moved him up to the regular room. And then we had, you know, like the sort of weekend of, of training on learning everything.

Scott Benner 40:26
What did they do 15 years ago when a peg sliding scale?

Liz 40:31
No, they did talk about that. But, I mean, they kind of brushed over that. But we just we we were on MDI right away, and they put them on human log and Lantus. So, I mean, I feel lucky that they gave us that because knowing what they still are,

Scott Benner 40:50
yeah, sometimes different province could have been a different situation. Well,

Liz 40:54
yeah. And even this province, I mean, kids now being diagnosed or sometimes put on, put on

Scott Benner 41:03
what the they're still giving them like regular and mph sometimes. Yeah,

Liz 41:06
I think it's for school, school aged kids, like the younger ones, because they have no, there's no school nurses here. And there's no wait for the school staff to administer insulin. So I think that's, that's the way they think about it the way they get around it.

Unknown Speaker 41:24
Well, okay,

Liz 41:25
right. You did mention so when we switched cute, we got him onto a pump when he was five. And that was what they gave us that option. They're like, well, if, if you don't go on, I think no, I think it was like, if he's not able, if he's too young, you know, to administer the pump by himself. One thing we could do is take them off the pump and put them on this, like two shots a day. And I was like, No, we're not we're not doing that. So what we ended up doing was we started him in kindergarten a year later, so we pushed him back a year. So he would be so the thinking was like, by the time he starts grade one full days, he'll be older and more mature,

Scott Benner 42:12
able to help himself that mature Yeah, seen as the mature yet. Let me ask you.

Liz 42:20
Sometimes Sometimes not as much as he wasn't in grade one, but now he is.

Scott Benner 42:24
So what is it like raising a 12 month old with diabetes? Like what what was that like back then? I mean, how much insulin could you have possibly been giving him? It was so small.

Liz 42:37
I remember doing because we were on that they didn't have the pens. We were doing that in the syringes and right, we have the half unit syringes, but I would do I would try to ballpark quarter units all the time. You know, like, just barely pull it up. And you know, it was yeah, it was horrible. And then, I mean, the breastfeeding was good. And like it was if he was low, I remember breastfeeding him. But I was always wondering like, you know, does it give them too much? Or does he need like fed for a long time? Should I? You know, does he need insulin for that? Like it was just so? Yeah, yes. It was awful.

Scott Benner 43:22
And how did you there's just meters right. So you were testing with it? Yeah, just

Liz 43:26
meters. And yeah, he was just, I just remember him being high all the time. I remember I went in for one appointment. And I was saying, I think they must have asked like, what his blood sugar's were when he goes to bed. And I remember saying, Well, I don't feel comfortable putting him to sleep unless he's 15 or above. And they're like, well, that's a little high, you know? And it's like, well, if, if he's lower than that, he just crashes in the night. And then he's, he's really low. So it's like, I was purposely like, making him be 15 before bed. And, like, I just, I cringe when I think back like all the years of him being so high all the time for us younger.

Scott Benner 44:11
Wow. Yeah, I'm sorry, I pulled out my conversion calculator available at juicebox podcast.com. And 15 is an average blood sugar of 270.

Liz 44:21
Yeah, so that was that was what I was aiming for in the early days, just because probably he was taking like, you know, one unit of Glargine or something and it was too much or you know, his

Scott Benner 44:34
when did that begin to change?

Liz 44:37
Um I can't remember when he started using sort of a more normal amount of insulin. I mean, it was early days I remember a long time of him just being on like sick two units or two and a half units of long acting and then half units for a meal here and there and Everything is in such a blur. I feel like I've lost years of my years of my memory, either through self preservation or just lack of sleep, or I don't know. So I feel like there's details that I can't remember. But he got us he got onto a pump when he was five, and then he didn't sort of CGM until he was nine. And I don't know how we did that. Being on a pump without a CGM, like those those years were pretty awful to like, he was just like, he's always he's always been very swinging up and down, like fluctuating blood sugars, and he has to get seizures to like from the time. I'd say his first seizure was he was 18 months old, and he had sort of a handful of them in those early days.

Scott Benner 45:54
Seizures from low blood sugars. Yeah, yeah.

Liz 45:58
They would mostly happen during, like, say he had an afternoon nap. That was when he be waking up from his afternoon nap. And that's when it would happen. Like, say he'd been super active in the day and then had a nap. And then yeah, I think

Scott Benner 46:15
there's too much insulin. And then he dropped. And there's no way to know he's dropping, and I've seen a couple of seizures. They're, they're pretty frightening. So

Liz 46:24
yeah, they're horrible. They're horrible. And I feel I don't know if it's just something with how I process them. But I, I sort of, I don't know, I It's like, my brain plays the movie of them over and over in my head. You know, I think I had jumped onto one of your calls, maybe a year, almost a year ago, like you had one of those big zoom calls. Yeah. And I had just like, it had been like, a month of three seizures in our house like miles, had had to and my husband had had one like, right after my son. And so it was like, frazzled and fried. I was like, How do I stop thinking about these seizures?

Scott Benner 47:10
Well, they're frightening, because, I mean, you know, they call them low blood glucose, incidences. So I think they're trying to make it sound better for you. But I mean, it's your, you know, your brains running out of sugar. And it's, that's the, that's the, that's the fuel your brain runs on. So too much and you have all these other problems and too little, and you shut off and it's not the kind of shut off or you turn back on. So you you know, when someone's with you, they can help you and but it's hard for you, I imagine not to imagine your husband or your son being on the road or by themselves or someone doesn't notice and, and then yeah, story.

Liz 47:50
Yeah. And I think with the thing that's scary with my son is he's had a number of them where his blood sugar has been, like, say 3.6, which is not crazy low. I mean, he's, he's been much lower and not had seizures, but then he's also been lower and had seizures. So I, you know, that thing, they always say, like, trust what you know is going to happen. I feel like I can't, I can't do that. And I get so anxious. Like, just last night he was he dropped down to 2.8. And my eyes, I get super anxious if he's below a four. Because I'm like, a four going down could like, this is when he's had the seizures before. Yeah, yeah. So if I say trust, what I know is going to happen. I could like base it off of well, he's gonna have a seizure. Because that's happened before

Scott Benner 48:44

You think it's happening? Now in fairness, in fairness, are you saying 65 on a CGM, or are you finger sticking an sr 65?

Liz 48:54
Both I've done it where the CGM, you know, said so 3.6 is 65. Yeah. Yeah, so the CGM has said that but it has been on a downward trend so most likely he is below that. But then also I've done it with the fingerstick because he's been why is

Scott Benner 49:14
he falling so quickly at low numbers?

Liz 49:18
I don't I it was probably just a miscalculation on you know, maybe he sometimes he forgets to pump he forgets to enter his carbs and so he'll you know, the insulin is probably working faster than the food and or miscalculating or being more active for you know, it's it's always one of those things where it's like the little things all add up to make that perfect storm.

Scott Benner 49:47
Yeah, no, I know. But.

Liz 49:50
But he's, he's looping which I am so thankful for because I feel like it saves them so much. Last night, yeah. How's

Scott Benner 49:57
that? Sorry. That was just Oh, it's good. It's great.

Liz 49:59
You I love it. Yeah. Because last night when he he was dropping, he has basil had already cut off for an hour before. So it was sort of it's just a safety net, right?

Scott Benner 50:15
Yeah, no, I mean, it's a huge help. Obviously, it's an end if you mess up so big. I mean, listen, nothing's perfect, right, you could screw up in a way that that that the algorithm couldn't help you from, but it's, I think 99.9% of the time, it grabs Arden at the very least in the 50s, the mid 50s. As as she's trying to get low, but you know, I've seen it not be able to help to you look up and later see that, you know, it had been taking basil away for hours, and it still couldn't stop the low, which, you know, is where you have to come in, but he's 15 It's a tough age, I would imagine. You know,

Liz 50:56
yeah, I mean, he's, yeah, he's 50. He's sort of a night owl. And so we were joking. Last night, he did a carb, a carb test at two in the morning. Carb ratio test. Like, that's why that's why he went low last night. I was like, Okay, well, I guess. Thanks for that. Now. I know I need to adjust your carb ratio for two in the morning for the next time you go snacking.

Scott Benner 51:22
whole generation of kids that don't sleep. i If half my problems are that Arden is like at 11 o'clock. She's like, Oh, you know, I'm gonna have a snack. I'm like, Please, no.

Liz 51:37
I know, it's so hard. And, you know, he's, for the most part, he's just so great about, you know, doing all this stuff. And, but he just he forgets to, like, I see that rise and like, what did you eat at 345? I can see it. He's like, Oh, nothing. And then he was like, Oh, right. I had six pieces of bread.

Scott Benner 52:00
Anything on it? No, just bread. I ate it. Like I squeezed it up into a ball and then chewed on it. Great. Thanks.

Liz 52:08
Yeah, so I'll be I'll be chasing that for the next while but no, I mean, he's, he's got a lot to think about. And he's, he's, for the most part good.

Scott Benner 52:17
Doing good. Yeah. I just love that. You said six pieces of bread. I don't know why. Because part of me thinks you just randomly made a lot because it sounds ridiculous. And part of me thinks it happened.

Liz 52:27
Yeah, so that might have been like four pieces yet. I overshot that by two.

Scott Benner 52:35
Reaching into the Wonder band just pulling out Brett. Oh my gosh, how do you guys even get bread there? They must Well,

Liz 52:42
I make bread. I make bread a lot. I'm on a big sourdough kick. But yeah, we do have grocery stores.

Scott Benner 52:49
No, stop. They have staples. How did you listen to this? I have a number of questions here. First of all, do you guys make a living playing instruments?

Liz 53:01
Um, yeah. I wouldn't. I wouldn't advise for two musicians to get together. But no, it's yeah, we do. We're very lucky that we're both you know, we're doing what, what we love to do and it's it's hard to get a job in an orchestra. You know, and then the fact that we both were able to get a job in the same orchestra. It's pretty cool.

Scott Benner 53:26
Oh, wow. So you do you play regularly? Somewhere? And

Liz 53:29
Excellent. Yeah, yeah, we both play in the symphony.

Scott Benner 53:32
Gotcha. Oh, that's lovely. And when who watches these children's since you're both working at the same time in the evenings?

Liz 53:39
Well, I mean, now they're all you know, miles 15 and are older or other son is 13. And our daughter who's 10 is probably more immature than all together. So yeah, it's, it's fine. But it was, yeah, it was very expensive for the years. Yeah, yeah. Yeah. So we'd have to pay for a babysitter to come to the house and then for the daytime rehearsals and then we'd have evening rehearsals and then weekend days and we can eat so it was yeah, it was a lot.

Scott Benner 54:15
Do you have to pay a hydrocephalus tax when you get a babysitter? Are they like, Yeah, I'm gonna be pushing that up. 20% here. We're like a diabetes tax. How do you find a babysitter that can help you with a diabetic infant?

Liz 54:28
You know, it was we were pretty lucky. Like we somehow we found we found great people and I remember I remember interviewing a bunch of people. And I would go through the whole you know, because like, I have to show him how to use an EpiPen and talk about all the allergies and then you know, all the diabetes stuff and there was there was only one girl who was like, This is too much for me. I don't feel comfortable. And, you know, I I commended her for You know, being open and honest about that, because it would be a lot for, but most everybody else was like, okay, just show me what to do. And

Scott Benner 55:09
yeah, that girl yeah Mandersohn Is that correct?

Liz 55:15
Yeah, so like

yeah, no. Yeah, she came on her dog sled No. Yeah. So we yeah, we've we've had great babysitters, and we had, if you want to hear a crazy seizure start like this was, I still have huge amounts of guilt over this. So the one so our son was six, and need had sort of basically a full time nanny. That was like the full babysitter. And she was so great. Like she, she would do his sight changes, like no problem. She she had a great sense of, you know, just managing his diabetes. So we'd had her for a year and the orchestra was going out of town for three days to Ottawa. And like, we went back and forth for a long time. We're like, Can we do it? Can we do it? Maybe one of us should go and we're like, you know, she's, she's good. And we trust her and it'll be fine. And so we were everything was good. We were in Ottawa. And, excuse me, the last, the last day, we had our, our concert. So we both spoke to her backstage. And she say, oh, yeah, everything's great. You know, the kids just had a big dinner. And you know, we're just going to play and then go to bed, so everything was fine. So we turn our phones off to go on stage. You know, you can have your ringers on. We play our concert. And then both of us just forgot to turn our ringers on. And we didn't check in with her because everybody was asleep, you know, and like, we both forgot to turn our ringers on anyway. The next morning, we get a phone call from the front desk in the hotel, and they're like, we're connecting you to someone, and it was our babysitter in tears. And she's like, I've been trying to reach you all night. Miles has had a seizure. And the ambulance is here at like she was just so frantic. And so what had happened was after after the dinner, he I don't know if he'd picked up the stomach flu or if you've just eaten too much, whatever. So anyway, he had had a huge amount of insulin, huge amount of food, and then he threw it all up. And then he couldn't. He didn't want to take in any more carbs. And she couldn't get them to eat or drink anything. And how old was he there? I'm sorry. He was six. Yeah. And so. I mean, she was amazing. She gave him she's like, well, you're not eating, I need to give you this shot. So she gave him the glucagon. And she wasn't sure if it all went in or not. And, and, or maybe she just felt like she needed to take him in. So she called her dad over to watch my other son, and she drove him to the hospital. And they, they put him she's like he needs to be put on a glucose drip because he has all this insulin in him and no food. Please put them on a glucose drip. And they're like, no, no, it's fine. It's fine. There, we'll give him some gravel because he was throwing up and they're like, just, it's okay. He's good. He's stable. Just take them home and just make sure you tests blood sugar every three hours. Just like she was begging them to do something, you know. So anyway, so she, she took them home and she tested him. Luckily she tested him every she was testing like every 20 minutes or something. But by this point, she was exhausted and tired. And she woke up at five in the morning to him seizing and then she called the ambulance. And then that's that's when we got the phone call. How old was I? She was 12 I feel like she was 24 Wow. Yeah. Well, yeah. She was she was great. And then so we were we were speaking to the paramedics and they're like, well, his his blood sugar's I think six or seven or something. You six and he's stable. Do you want us to transport him to the hospital? And they're like, Well, no, I mean, he's, we feel comfortable with him home with with her there. And anyway, so we hung up the phone and we're getting in. We're like, hey, just check in with us keep testing him. So she was giving us updates, you know, and then we're getting on the plane to come back. And we're like, just checking in, we just have to turn our phones off, how's everything going? And she was freaking out. She's like, he's in another seizure. He's been seizing for 15 minutes. I don't know what to do. And she was at this point, she was frantic. And so we're like, I was asking, I'm like, have you call the ambulance and I couldn't understand anything. She was saying she was just Yeah. And so I ended up calling the ambulance from the plane in Ottawa, and then they dispatched it to Winnipeg. And they're like, Okay, we've sent it, we'd sent the ambulance and then the flight attendants are like, you have to turn off your phone. And we were wondering if Steve is going to have to get off the plane to keep talking to her anyway, so they, they actually taxied for a little bit longer and let him talk. And then they, like, you're gonna have to turn your phone off. And then they Yeah, so we had, I think an hour and a half of not knowing how he was like, knowing that he'd been in a seizure for 20 minutes and not knowing if the ambulance and anyway, so they, they were great. And they updated. They kept updating the pilot, and they would come back and say your

Scott Benner 1:01:09
list, you broke up again.

Liz 1:01:12
Using what they were able to do. I'm so

Scott Benner 1:01:14
sorry. You broke up ago,

Liz 1:01:15
they updated on guilt on that episode is is still.

Scott Benner 1:01:19
Oh, let's hold on your internet connection. They updated the pilot. I'm sorry. Yeah. And then they kept coming back then you were gone.

Liz 1:01:30
Yeah, they kept. They just kept giving us updates on the plane. So that was, that was great. I was so scary.

Scott Benner 1:01:39
Well, besides the fact that that's horrible and frightening. I'm amazed that you were able to talk them into driving an airplane around on the ground, so you can keep talking. But you couldn't talk a doctor into putting him on a like a you know what I mean? Like it's such a it's ridiculous. Like she had him at the right place. Like she No, she did the right thing. And no one

Liz 1:01:59
had Yeah, exactly. Had they just done what she had said, I mean, she was she knew she was like, this is going to happen. And she was just sort of waiting for it to happen that.

Scott Benner 1:02:10
Oh, it's terrible. Well, you made me sick. I'm nauseous now. Okay, so I can't imagine like, did you? I don't even know what to say like, did you think of just like getting off the plane? And like being like, we have to get off the plane or?

Liz 1:02:29
Well, I mean, yeah, my husband is considering just staying off the plane just to just to be able to communicate with her, you know, just but. So when when we had to turn our phones off, it was like, we knew that the ambulance was called. And it had been dispatched. So

Scott Benner 1:02:49
he was okay, after that long seizure.

Liz 1:02:52
Yeah, so Yeah, cuz he'd had the one. Earlier, he had had the one earlier and then. And based on that, because his, you know, he didn't have a CGM min. But based on the fact that he the last blood sugar reading that he had was, I don't know, like a 4.7. Before the seizure. They're like, well, we better rule out that it's, it's, there's nothing else going on besides the I mean, I was I knew it was blood sugar related those ones, but they did the EEG just to make sure there was nothing else and it was fine. And they actually just repeated that because he'd had the the seizures in the fall when his blood sugar was not super low. And they just wanted to make sure that there was nothing else. And so they just, they did that. And it was fine. It was normal. So I think there's just something with him that he drove whatever reason he can seize at a different time or a different number.

Scott Benner 1:03:52
Has he had one since he's had a CGM?

Liz 1:03:55
Yes. Yeah. Okay. Yeah. So he's had, he's had a few like, he had one. Right before I started looping the way started looping in 2019. And he'd had one and that was sort of a catalyst for me starting loop. And then he, I mean, he's had lots of near misses for sure. Like where I've caught it in time. But I could tell like, you know, how to caddy. Had I waited he would have gone into one but and then those two in the fall and I Yeah, the one was, he was napping in the afternoon. And he had had he was super emotional that day. It was the day before school started. And he'd had his I taken his computer away his laptop away for the summer. And then I gave it back to him the last day before school and then he'd forgotten his, his code to get in and he was very upset. And then I think just nervous from school and then he'd probably He just slept hard and didn't. Didn't feel it didn't wake up.

Scott Benner 1:05:05
Geez. Why did you take the laptop away? Was it porn?

Liz 1:05:11
No, but it was just just poor choices.

Scott Benner 1:05:16
Was he building a bomb? Alright, well then nothing too bad. That's fine. Wow, holy crap. I didn't know we were going here. That was that's terrible and crazy. And and so do you just have a different target? Do you target him more like 110? Or 120? Or what do you do?

Liz 1:05:38
Yeah, I have this his target at on loop, I have it 5.2 to 5.5. And then I'll often use a override that's like I call it my pasta override where I all the settings are the same, but it's up to a target of seven. So I'll throw that on if he's if he's sort of going lower eating, you know, a bunch of bread or pasta.

Scott Benner 1:06:06
I have Hold on. So first of all, for people 5.2 I was 94. Still. Okay, so you're not targeting that. Hi. And now you said I can't believe we haven't gotten to this yet. But your husband was diagnosed with type one when

Liz 1:06:23
so Myles was about. It was about 18 months after he was diagnosed.

Scott Benner 1:06:29
Okay, so he's your husband's had it for 13 years or so? Yes. Well, yeah. And he's had Yeah, sure to.

Liz 1:06:37
Yeah, he's had a couple as well. Like he had a really severe one. About a year after he was diagnosed. And then he had one just last follow like, you know, after a couple days after miles had had one so I was pretty frazzled. Have yet.

Scott Benner 1:06:59
I want to get back to you in a second. But have you gone to a doctor and been like, hi, these are the two boys in my house that keep having seizures. Can you please figure out why?

Liz 1:07:10
I mean, I think that, you know, they did check. They did check miles out, like just making sure that there was no underlying, you know, I guess epilepsy or something, but and, you know, maybe maybe it is there hydrocephalus. Maybe it's a sort of holdover from? I don't know. I mean, they never said that, that would be a possibility. But

Scott Benner 1:07:33
I'm gonna ask the question, and you're gonna take it the right way. Okay. Thank you. Is there any chance you're just bad at this?

Liz 1:07:44
Well, maybe, you know, like, when he was young, and

Scott Benner 1:07:47
well, yeah, that is a show. Like, that's for sure.

Liz 1:07:51
So, I was so bad. And I was he was always high. And like, they were happy when his agency was, you know, eight. And, you know, he's just high all the time. And yeah, I mean, we still have, we have lots of bad days, like, he's looping and he has all this great technology. But if he forgets to Bolus for something, or if his settings are a little off, I mean, he's growing so much. Like he's, like, you know, he's like, a foot taller than he was last year. Yeah, sure. Yeah. So it's like,

Scott Benner 1:08:25
it's, I don't mean bad. Like, listen, I'm assuming now somebody's gonna be mad at me. But I mean, if you listen to podcasts this long, you know what I mean? But it's, you know, like, our settings bad? Are we just flat out not bolusing for food and then making like crashing, you know, corrections later? Are we not? Are we not checking at intervals? Knowing that after we do these things, we really have to look at 90 minutes are we you know, whatever the time is for you? Like, are you just are you not doing the things that would stop you from having these problems? Or these problems just magically, like overtaking you because you're describing, what 20 years ago would have been called, like a brittle diabetic? And I don't know that that's a real thing. And that's where I'm stuck trying to talk to you about this. I'm not sure what to say like, the stories are fascinating. But I mean, I'd love for you never to have a story like this again. So I'm not certain. I mean, I'm not there, obviously. But like, how much is the way your son for example?

Liz 1:09:30
He's about 120 pounds. Okay. And it was, yeah, what he was 112 like he's taking Vyvanse for, like, add when so when he's in school, he takes the Vyvanse better over the summer. He doesn't so he's gained. He's put on some weight over the summer. Yeah, no, for sure. I mean, I feel like I never feel like I have. Like, I can never I always Feel like I'm on edge because I'm like, Well, this might happen. This might happen. I'm checking all the time. But

Scott Benner 1:10:06
oh, I'm amazed you just walked off into the wilderness like, you're, you seem kind of amazing to me. By now, it would have been like, Hey, I gotta go. You other three want to come? That's fine. But trombone and let's name are staying. I'm not taking you with me. You're like I get it. Just, it's a lot. And you're describing a situation where you must be in like, flight or fight constantly.

Liz 1:10:34
Yeah, I feel I kind of feel like I am and with, with Steve. I mean, it's he's so frustrating. Because He's so stubborn. And so old school. Like, I finally just convinced him last year to wear a CGM, and we have cub, we have great coverage. It's not the fact that we can't afford it. We have it. But he would for the longest time. He would not wear a CGM us like I'm always 4.5 I'm looking. I'm always great. I don't need a CGM. Like save it for somebody who needs it? And it's like, well, you've had a seizure. You know,

Scott Benner 1:11:10
boys? Yeah, yeah. And

Liz 1:11:13
so he and he, you know, he had had a few scares, for sure. And so anyway, he I finally convinced him to wear one. And then he's like, Oh, I guess I'm not always 4.5 Look at that.

Scott Benner 1:11:28
Lesson lesson was I test twice a day, and at the same exact times, and I'm always employed by

Liz 1:11:35
Yeah. And I mean, he did keto for about a year and a half. And he was, you know, hardly taking any insulin and, and then he told me, you know, a year after he started keto, the reason why he started keto, is because he had this big scare with, like, we were at my parents place, and there's a little mountain behind our place. And we were hiking up with the kids and Miles had had some lows on the way up. So he'd eaten all the low snacks. And then I took everybody else down. And Steve decided to go out the rest of the way with with our daughter, who was six at the time. And he he started to feel super low at the top, and he and he knew it was a bad one. And he was in his mind preparing. It's like, how do I get my daughter down the hill after I lay down and have a seizure? So he was coaching her to remember the way down, you know, you might I'm getting pretty tired, I might just need to have a rest, you know, can you remember the way down and you'll tell grandpa to come up with this track and give me a ride down thinking that you know what he would find. And so along the along the way, there's blackberries at my parents place. And so he found he found a good patch of blackberries and just started shoveling them in his mouth. And he was able to get down the hill. But he didn't tell me that for about a year. And he was like, and that's the reason why I decided to do keto because I, I just was, I didn't want this big spike of insulin. You know,

Scott Benner 1:13:16
if you try to avoid active insulin during activity, it'll help you with Lowe's. Like you know this stuff, though, like you really do listen to the podcast, right? Oh, yeah. Okay. Is there a lack of planning? Like, you mean with with Well, in that scenario, like we're

Liz 1:13:33
gonna, with Steve, I don't know what happened with him, you know, like, and I don't manage his diabetes. Like he's, he is usually really good. Like, he is on top of it, but there's always the, you know, like, maybe he had had a big piece of my mom's pie and, like, gave himself too much insulin for it, and then didn't realize that he was gonna go up the mountain, you know? Yeah, yeah. So I, I might, in my mind, I'm like, I could set you up with loop. I, you know, I have my developer's license, I could get you on. You know, I'm like, please let me do this for you. And it would take your your mental load off, but he's too stubborn. I asked him today. I was like, Can you remind me of like, the top five reasons why you don't want to go on loop? And he said,

Scott Benner 1:14:19
because I don't want to make me and you're not my mom. Back? And is he 45 years old?

Liz 1:14:30
Yeah, he's 49. Yeah.

Scott Benner 1:14:33
Hey, you. You named the kid after Miles Davis, right?

Liz 1:14:36
No, no, we didn't. Everybody always asked that. But no, we didn't really. It was just one of the few boys names we could agree on.

Scott Benner 1:14:42
No kidding. Well, that's interesting. Well, listen, you have to be stubborn to play the trombone. Because be because when you're a child, and you look at it, I mean, who looks at it and goes, that's what I'm going to do. That's what I want to do. Yeah, it's gonna be that one right there. Did he get stuck with it isn't like my story where I wanted to play the cello, but they gave me a saxophone.

Liz 1:15:05
No, I mean, he chose it. I guess he Yeah. Okay. loves it. Yeah, he's great. He's a great player,

Scott Benner 1:15:12
I imagine. Yeah. I mean, people don't pay you to play music. If you're, if you're bad at it, that's for sure.

Liz 1:15:17
Yeah. But I mean, yeah, it's, it's gotta be interesting to having, from his perspective, having diabetes, like being a professional musician, you know, because he's, he's ran into scenarios where he's on stage. And, you know, he starts to feel the drop. And he's like, somebody go get me a juice, you know, or, you know, know, and you have a big solo coming up. And, yeah, that's gonna be scary, but he is really good. Like he, for the most part, he's great. He hasn't been wearing the CGM for, let's say the last two months because our insurance they were paying for it. And then they're like, we actually need a letter of necessity from your doctor and

Scott Benner 1:15:58
podcast.

Liz 1:16:01
So he's just been lazy. And not going into get the letter from his doctor. But he's, I do want to go back onto it. Because,

Scott Benner 1:16:09
yeah, yeah. I don't know why. Oh, my God. All right. You fried my brain. So let's, let's take a break for a second. Do something fun, and then I want to ask you how you are. Okay. So here's what we're gonna do. I have a website here of the most famous female Canadians, and I'm stunned by the list. So first of all, there are people on the list who are not Canadian. So I don't know who made this list. And it's literally fit. But do you believe Rachel McAdams is the most famous Canadian female? No way, right.

Liz 1:16:46
No, I mean, she has she has a she's a current, famous actress, I would say

Scott Benner 1:16:52
being girls was a while ago. Then they have Afro Levinas, too. Okay. Her time has passed, but whatever. Now we get to a couple of people. This is fascinating. The third person is from Bulgaria, whom and then it's and then it's it says birthplace, Bulgaria. And then she's, I guess she lives in Canada, Nina dobro, or something like that. But but but not the point. You can't be a famous Canadian actress. If you were born in Bulgaria. You're a famous Bulgarian actress. No. Yeah, I agree. I agree. Then Celine Dion and Colbus molars somehow end up under they're all from Bulgaria. I don't understand that at all. This one threw me off. Shania Twain isn't from the south of the United States.

Liz 1:17:38
Yeah, I forgot that. I mean, it kind of sounds vaguely familiar, but I yeah, I thought she was from states Catherine

Scott Benner 1:17:43
O'Hare. Okay, I know, Sandra Oh, threw me off. I didn't realize she was from Ontario. Evangeline Lilly I knew was from Canada. Here's another made up word Fort Saskatchewan. that can't really be a real place. Because I noticed now I scroll I scroll I scroll. Alas, mindset. I don't know how she should be number one. I did not realize Emily VanCamp was Canadian. Now. Here's the crazy thing. Top 20 number 16. Now number 17 is Joni Mitchell. Okay, but number 16 is a porn star. How do you think Joni Mitchell feels about this list?

Liz 1:18:21
Yeah, that's not fair.

Scott Benner 1:18:22
I don't understand. I just anyway, it goes. Nothing wrong with being a porn star. But I say that I'm saying Joni Mitchell is gonna be like, I don't rank higher than pornography. Like, okay. I don't know. I'd be thrown by this. Anyone under that? I don't know. I'd be upset. I didn't know Margaret Atwood was Canadian. That's cool. All right. Anyway, here's another one. Jennifer Tilly birthplace Los Angeles, California. How does this kit

Liz 1:18:53
usually just lives in Canada

Scott Benner 1:18:55
doesn't make you I don't listen. Do you have to be born in the place? Well, I guess you could get your citizenship you know? That doesn't count you know? It doesn't count and I know it doesn't. Anyway, anyway, this this list is like a who's who of people you would not know.

Liz 1:19:16
I still think it's funny that my kids are from Winnipeg, you know? Like

Scott Benner 1:19:20
you think you actually think it's a it's crazy?

Liz 1:19:24
Yeah, it just always Yeah, throws me for a loop sometimes because I'm like, oh, yeah, my kids are Winnipeggers

Scott Benner 1:19:30
where you were born in in Washington State. Are you Canadian? Now did you do the thing where you sign up? No, I

Liz 1:19:38
need to get I need to get it. I'm just I'm just bad at doing adult things. Sometimes. It just takes me well, because I'm guess I'm just thinking about blood sugars.

Scott Benner 1:19:48
Yes. So back to you. Oh, my favorite Hannah Simone. Do you watch new girl? Yeah, yeah, I watched that was pretty sure CeCe is my favorite character on new girl followed up by I Schmidt in the early years, and then anyway, my least favorite is the main character. I'm sure she doesn't care what we Yeah, so easy Chanel, there's something about her that makes me she can you know, I'm just not just talking about new girl. We shifted off of that. I want to ask about you before we're done. Okay? Because you are in a, in a bizarre scenario like Vic, you have three other kids on top of all this. So you're a working musician, like it's not a standard nine to five job, obviously, your husband has type one, and your son has type one, and they're both prone to having seizures. And I just imagined you as like a cat in a room full of rocking chairs. Is that how you are?

Liz 1:20:52
Um, yeah, I don't know. I mean, I you know, people say to me, like, Oh, I'd be so stressed. And I am so stressed all the time. I feel like I probably should be in therapy. And I'm not but I don't know. It's It's stressful. For sure.

Scott Benner 1:21:10
Therapy, you should be drunk many hours a day was I don't want to i not i understand alcoholism is not the way to treat a problem. But you might be able to get like a some sort of a card or something like that. Seriously, I don't know that heroin is not right for you. There's like, how are you dealing in reality all the time?

Liz 1:21:32
Well, I don't know, actually. And, you know, poor, poor miles. Like he has all the stuff and the other kids don't have anything. I mean, they had a little bit of like viral induced asthma, all of them, at one point needed a inhaler when they get a cold. But it's not like they have to use it all the time. But he has, you know, he gets the diabetes and the severe food allergies and the thyroid, and

Scott Benner 1:21:59
so you don't get to think about yourself because they have worse situations than you.

Liz 1:22:06
Oh, yeah, I turned it away from me, didn't they? Yeah, I just I yeah, I guess I'm just focused, focused on them and trying to keep the peace. You know, like the kids. Just for them. They sometimes will fight and just trying to keep things calm. But

Scott Benner 1:22:24
because you're so not asked, answering my question.

Liz 1:22:29
I just, I don't know. I don't know how to manage it. Really? Because I guess.

Scott Benner 1:22:34
So is the answer that you're not? Or you're just like,

Liz 1:22:39
Yeah, I mean, I do feel frazzled and tired all the time. You know, like loop definitely helps me get more sleep than I did before. Like, before I was a complete basket case. I feel like, and I do. I do feel like I joke about it. But I do feel like there. I've missed I'm missing parts of my memory. Because I like, I'll be having conversations with people and they bring up something that I've said before happened, or people I've met, and I like literally no recollection of it. And I always feel I always feel bad when I'm talking to somebody. I'm trying desperately to remember details, because I don't want to seem like I'm, you know, not caring about what people say. But then I feel bad if I don't remember things or like, and literally like I you know that face blank. You hear people say they have face blindness? Where? Yes, they just think yeah, I don't know if it's some something I have like maybe a little bit of that or like I'll be I'll be I'll meet somebody at a gathering. And I'll have a full conversation with them. And I'll be talking to them for I mean, it could be half an hour or an hour. And then if I need them. I don't know I meet them six months later, and I have I would be like, Oh, hi. How are you? You know, like, was nice to meet you. Like they're like, we've had we've talked?

Scott Benner 1:24:07
Do you really think is is it possible? You have that? How do they diagnose it's called I just feel like I'm sleep deprived. Okay, so you just exhausted? I think so. Do you how much do you sleep?

Liz 1:24:21
Um, well, I don't know. I mean, I, I try to go I usually tend to fall asleep around midnight, but then, because I like to sort of see what's happening, like, what his last snack is going to do or whatever and then, or I'll hear him up at midnight and I'm like, Oh, he's gonna eat something. So I have to sort of be on extra alert. And then I you know, I have my alarms and alert.

Scott Benner 1:24:50
So, Liz, I'm stalking you online right now.

Liz 1:24:53
Here's something I wake up and check it a couple times a night.

Scott Benner 1:24:57
Okay, hold on you. You blipped out at this The craziest moment so I didn't hear oh, sorry. No. Wait, do you hear what I said? You use headphones. No, no, it's not your internet connection. I get a I get a signal here internet connection gets bad, but so you're staying up later at night checking on him. And then I didn't kind of get the rest of it.

Liz 1:25:20
Oh, yeah, I just I think I have trained myself to even if, even if I think he's going to be steady, I just trained myself to wake up and check it anyway. So I check it a few times. And it's great. You know, I have I have the loop on I charge his watch next to me. So if I have to give him insulin or put an override on I can do that from my bed. I don't have to get up.

Scott Benner 1:25:42
Right. But you're getting a lot of broken sleep. Yeah, I think so. Yeah. Very bad for you. Okay, so what I was gonna say is what I did say when you couldn't hear me, which was wide felt creepy, is that I'm stalking you online at the moment. And so you're, you're a thin person. Is that right? Yeah, but when you were married, you were thin but not that thin. Not as thin as you are now. So are you like, lizard? So? I've always been thin. Okay, maybe it's just a photo. You're like, oh, I looked fat at my wedding. Great. Is that what you're saying? It's not what I'm saying. You looked more like a youthful, like, I don't know what to say. Yeah. Adorable. But

Liz 1:26:21
the bitterness wasn't there.

Scott Benner 1:26:27
What's your mouth seeing Scott? Balding a trade of life?

Sorry. Now we're getting to it. Liz. So, are you so I was just gonna say are you naturally like lean? Or are you out of your mind? Thin? Do you know what I mean? By the two things?

Liz 1:26:52
Yeah, no, I yeah, I feel like I'm just not like, yeah, naturally lean,

Scott Benner 1:26:58
okay, because there's a thing that happens like, like, like, there are some stressed out people are sometimes either really thin or heavy. Like they go in one way or the other. Right? Like they eat a lot because of the stress or they don't eat anything because of the stress. Right? But you would

Liz 1:27:13
start I started taking I have like chronic migraines and stuff. So I've been taking this medication for the last little while and they've they've upped it. I didn't notice anything for the first nine months when I was taking it. And one of the side effects is weight gain, but I didn't notice anything until they just upped my dose recently and I have I think gained about six pounds.

Scott Benner 1:27:36
Okay, well, what does that make you? 91 pounds? Like? Yeah, okay, so you're not gonna get any compassion out of me on that one? Listen. If I lost six pounds, you'd look at me go Scott looks exactly the same. But But okay, so being like being serious, if I can be I don't know, because you really cracked me up with a bitterness statement. Like, that's amazing. You're Are you not okay, but you're just telling yourself you're okay. Like, are you willing yourself to go on? Or do you actually think, like, Is there is there going to be a moment your life when you look back and go, I wish I would have taken care of myself differently.

Liz 1:28:19
Yeah, maybe? I mean, I, yeah, some days I feel like that for sure. Other days, I feel fine. And I'm just sort of, you know, going along, things are fine. And then other days, I feel like Yeah, super stressed out. I mean, I mean, my my job is like, our job is kind of stressful as well, like I you know, we're not working right now. But we'll start back up again in September. And it's kind of a high stress situation, you know, like, preparing music that has to be, you know, at a concert level and,

Scott Benner 1:28:55
and then doing it how many times a day once you're working?

Liz 1:28:59
Um, yeah, it depends on what what kind of concert we're doing. But yeah, we'll have we'll have a few rehearsals and then the concert and then probably yeah, sometimes it's like two programs a week like different music that we have to prepare. Can you

Scott Benner 1:29:14
enjoy it playing the music? Or does it feel like work?

Liz 1:29:19
Yes, and no, I mean, I feel I'm always in pain when I play. I mean, I there might be something I feel like there might be something going on with me and I just haven't figured it out. Like I'm in constant pain when I play. So I don't enjoy it as much as I know I would if I wasn't in pain, your joints muscles so much my joints and muscles might like I have I'm, I have one leg that's I've one leg that's a little bit longer than the other one. And then I have a little bit of scoliosis as well. So I feel like I'm and then playing violin is so you know, it's not very good than that. What it's all it's all cricket like you're over developing and using. Anyway, so I probably Yeah, it's probably just a posture and muscle thing. But even if I take, say I take three months off or two months off, which doesn't happen very often, but if I, you know pain almost, you know, it's, it's more when I play but

Scott Benner 1:30:30
so when you take time off because you've looked out for a second when you take time off the pain kind of lessons a little bit, but it's still there. It's still there. I've never like it's very infrequently that I think this but you should probably smoke weed. Like I probably should. Yeah, of all the people I've talked to in the last 30 days, I'm putting you at the top of my Canadian, not Canadian ladies who should smoke weed list. Yeah. So and you've gotten me so relaxed. Now. I like you so much that when you said I have one leg longer than the other?

Liz 1:31:05
Can I make so much fun? I have

Scott Benner 1:31:07
scoliosis I thought to say braggart because my like my real sarcasm is like it's bubbling to the top now. Like, I give you guys like 8% of my sarcasm, because I don't even believe you would like me if you heard it all. So I just had an incredibly sarcastic thoughts all the time, which I then distill down and try to turn it into thoughts while I'm talking on the podcast. But Oh, listen to her bragging. Yeah.

Yeah, I don't know, I'm worried for you. I know.

Liz 1:31:46
Part of me thinks I'm like, maybe I have fibromyalgia because I'm always tired. And I'm always sore. And why would

Scott Benner 1:31:52
I write first about that? Yeah. Right. I mean, especially if your son has hypothyroidism and there's autoimmune in your family. I know your husband has type one, and so does your and so does your son. But that doesn't mean that it can't be something on your end it also, you know, you're so used to looking for people being sick. Because of your scenario, I find myself in this sometimes if something happens in the house, I'm like, that's probably definitely a rare type of blah, blah, blah, because you're just used to things like that happening. And then sometimes it's like, oh, no, that's not it. I just have a cold, like, you know, like, and so, I mean, like, because you're like, I might have fibromyalgia, you also might have scoliosis, and just be uncomfortable, because you're contorting yourself playing a violin, right? So, and you're getting older, and you're under a ton of stress, and you're not sleeping. Right. So I don't know, what would happen if you just like took off for days and slept?

Liz 1:32:47
Yeah, I don't know, either. I think I would, I would just, I would get more stressed out. Just giving all the control over, you know, like, I would I would be worried that something would happen? My answer would be no.

Scott Benner 1:33:06
Is there a control thing going on?

Liz 1:33:09
Well, though, I mean, yeah, I realized that how that sounded. I mean, maybe like

Scott Benner 1:33:13
he realized how it sounds. It sounds like what you said. Yeah. So, I mean, it sounds like you're being very honest. For a second. You don't want to troll? I don't know, your family safety to be out of your hands.

Liz 1:33:28
Yeah, I feel like it would just stress me out. Giving all the all the burden to Steve to to handle. And then, you know, after, after that thing that happened when he was six, when we went to auto we for sure could I mean, Steve would love to go away just the two of us. But I was like, that's never going to happen again.

Scott Benner 1:33:52
Well, it will someday.

Liz 1:33:55
Yeah, I don't know. So we're actually we're waiting to hear any day. We should hear if he's going to be approved for alert dog. So

Scott Benner 1:34:05
your son or your husband?

Liz 1:34:07
Our son? Yeah. Yeah, so we started the process three years ago before COVID And then it's just sort of sort of finally wrapping up now to see if he gets it but

Scott Benner 1:34:21
yeah, so listen, you need proof of all that you remember the Jackson juice they put Michael Jackson to sleep with that's what you need. You need to go night night for like a while like, I know this is not legal, but it's you need you need.

Liz 1:34:40
A couple years ago, I needed I needed surgery. It was like

Scott Benner 1:34:44
best day your life. Yeah. Like a

Liz 1:34:47
hernia, like you know, leftover stuff from like muscles separating from the birth and stuff and I was joking with the nurse after I was like, can you just can you give me extra so I stay asleep for a long time because I never get to sleep at home. No kidding. I mean, they actually did. Did they really? Yeah. They're like, yeah, we felt sorry for you. So because I

Scott Benner 1:35:10
left you out a little longer.

Liz 1:35:13
Yeah, I was, at one point, I was like, you know, I woken up and and I was sick. So what, what sort of time and they'd left me there, I was there all day sleeping, like kind of just come pick me up and they're like, Oh, you can go home anytime we just, you know, just wanted you to.

Scott Benner 1:35:33
Please let me tell you, you've painted a picture today of a health care system in shambles in Canada. You've you by the way, if you ever get divorced, there's no way anyone who hears this is going to marry you. So you're not gonna be able to get

Liz 1:35:45
that one leg longer. I'm super stressed out.

Scott Benner 1:35:48
I remember, I'm waiting for when you're like, my vagina is actually on my thigh. And I don't know. It's just Yeah, it's sort of like midway between my knee and my hip. It's sort of on the outside. I don't know why it's there. Like you, but but still, I'm more focused on you not sleeping.

Liz 1:36:06
Yeah, I mean, it is

Scott Benner 1:36:07
a big deal.

Liz 1:36:08
It is. For sure. Better with loop. But yeah, I it is it's just hard. You know, like the, the last time that Steve had a seizure, it was in the middle of the night. And that time, I mean, I still I feel guilty about that, because he was actually high. He was wearing a CGM at that point. And he was super high before bed. And he had given Can you hear me?

Scott Benner 1:36:33
Oh, yeah, I'm listening. Sorry.

Liz 1:36:36
He had given himself a big correction. And, or I just figured a normal correction, actually. But I had told myself, I was like, I'm going to be hearing his high alarm for the next couple hours. And I psych myself, I'm like, don't listen to the ill I was telling myself don't listen to the alarms is just as high alarms. Because I was trying to, you know, just tune it out. And then it was actually his low alarm was going off. And I wasn't listening to it. Because I in my, my brain had switched it around thinking that he was just Hi.

Scott Benner 1:37:08
Any people in your life pass away, that you feel any kind of attachment to?

Liz 1:37:17
Um, no, I mean, I've had a floss gram, but but I haven't. Like, I haven't had any sort of tragic losses like that

Scott Benner 1:37:27
your guilt is like is, I understand it, like, don't get me wrong, like, I get where it comes from, and I understand why you have it, and I understand why you're worried and why you feel like you can't sleep, but it's so untenable. You know, like, is there any way you could talk yourself into it that way, like, you're not going to be around as long as you want to be for these people. I mean, not to say you'd be dead, but you might be so like, useless was the word I was gonna lose. Like, you might just, you might SAP yourself down to the point where you can't be helpful to them. And then that's going to make you feel bad. Like you're gonna have to, like, do something for yourself. And then now to get to the later if that makes sense.

Liz 1:38:12
Yeah, yeah, you're right. Yeah, for sure.

Scott Benner 1:38:14
Because this went in so many directions. Do you didn't expect this? I imagine.

Liz 1:38:19
I didn't know what to expect. I mean, I knew Yeah, I I guess I was nervous about you know, making sure that it was I had something of value to say, you know,

Scott Benner 1:38:32
well, you definitely do.

Liz 1:38:36
Yeah, cuz I get so much out of the podcast and if it's even if it's something that is not relate, not related at all, to my situation, I there's always some sort of nugget in there. That's helpful. But

Scott Benner 1:38:51
well, that's great. I'm glad I this is my favorite part of the podcast, and somebody says something nice about me, so I didn't want to didn't want to talk over you while you're talking. Like, keep going. And, and what else did I do?

Liz 1:39:05
Yeah, no, I, I really, I love I wish I you know, I'm so happy when I hear people that find you and the group and the podcast, you know, like, even when they're in the hospital, you know, or within the first couple of months or the first year even or it's just I I so wished that I could have had what you what you provide to people when he was first diagnosed, because I feel like it would have things would have been so different. And I mean, he's, he's doing great now like he has, you know, he has ups and downs and roller coaster days, but like he he's not having tons of lows right now. He's at like 1% Lowe's. And he's his last two agencies were like 5.7 and 5.9. So and he's been in the sixes for for a long time, but Um, yeah, there were definitely like, years when I just didn't know, having a a Wednesday, if eight was a bad thing you know,

Scott Benner 1:40:13
was, here's what I want for you. And I hope you'll listen. Yeah, set everybody's target at 120. And, like on a Friday afternoon, disappear into a room with like, blinds that go dark and just like sleep the weekend away. And just try to get yourself like, rested. And take five minutes to go to the doctor and get yourself a, you know, a checkup, have them run some blood work, tell them everything that you've been feeling. See if they can find out something simple. Tell them your kid has hypothyroidism you want your, your your thyroid levels checked, get your iron checked, like do all those little things that you know we don't do for ourselves. You could be tired from I mean, you're a menstruating age woman you could you could have low iron. You could have hypothyroidism yourself, you might not. There are just some simple things you could do to help yourself like I just feel like you're you're existing and you're not taking care of yourself at all. Yeah, am I right?

Liz 1:41:24
Yeah, there's definitely interest in there and yeah, yeah, you're right. Yeah,

Scott Benner 1:41:31
just take just take a weekend, like look at them and go, I am trusting the two of you not to kill yourselves or each other. And by the way, take care of these other three. Actually, if I was you, I'd put the other three in charge of those two, but I mean, you know, yeah. And. And your husband and your son. They're very much like the type ones.

Liz 1:41:52
Yes, yeah. They're, and they

Scott Benner 1:42:01
and they disappeared less.

Liz 1:42:03
And I think probably they're both too stubborn to admit that.

Scott Benner 1:42:08
Gotcha. Okay, so they even look alike, don't they?

Liz 1:42:12
Oh, sorry. You just cut out for a second. Oh, actually, you cut out

Scott Benner 1:42:15
but they're back. Yeah, no. So I asked if they were like you said they're both both stubborn. And I just that they kind of look alike, too, don't they?

Liz 1:42:25
Um, I'm kinda I mean. Yeah, all the boys. All the boys have red hair, like various shades of red hair. And Steve has like dark. I say it's black. He says this brown. Right.

Scott Benner 1:42:38
Oh, it's a lovely family. You have I would like you to get some sleep so you can see it and remember their faces a couple of weeks. You ever forget the kids names? Oh, I,

Liz 1:42:49
I mean, I know their names. But I always start all of you know if I'm saying I'm trying to save Felix, I'll go through the first syllables of everybody else's name. So it's like, we have miles Felix, Hazel and Quincy so I'll be like, hey, my Felix or fie. My Hazel.

Scott Benner 1:43:09
Yeah, this are you and your husband about the same age?

Liz 1:43:12
He's four years older.

Scott Benner 1:43:15
Okay, yeah, you're too young to not remember everybody's name. You're exhausted. Yeah. And you don't know it?

Liz 1:43:23
Oh, I to know, I

Scott Benner 1:43:24
know. But I mean, like, you don't know it enough to be like, I have to stop. You like you're like I'm exhausted. But look at me. I'm doing it. You know what I mean? Like, I used to be like that. I used to have that. Like, oh, I'm handling this. Like I'm handling sleeping four hours a night. I was not handling it. I just lied to myself and told myself I was. So I don't know it, just please take care of yourself. We're never going to talk after this list. So I'm going to worry about you. I'm going to be like this right now. I feel like I'm on the plane. And they're telling me we're going to take off and I'm like, I gotta shut my phone off. And I'm not going to find out if Liz does, okay. I mean, I'm worried I'm not. I know, it's, I don't want you to feel bad because we've only known each other for an hour and a half. And my takeaway is, this is gonna die, and I gotta do something. But I really want you to do something for yourself. I hope you do.

Liz 1:44:13
Oh, thanks. That's nice. Well, maybe maybe in a year or something. Steve will come on the podcast. And by that time, he'll be able to report that. He's looping. And he's wearing a CGM. And I'm sleeping.

Scott Benner 1:44:28
Yeah. Well, that would be that would be lovely. And I'd like to hear that story about him walking up the hill, because that almost made me cry when you were talking about that.

Liz 1:44:36
Yeah, I think that's why he didn't tell me for so long because he had a really scared him. Yeah,

Scott Benner 1:44:41
no kidding. I would imagine. All right, well, I appreciate this. I'm sorry. I kept you much longer than I said I was going to but Oh, that's okay.

Liz 1:44:47
No, thank you for letting me ramble on. Sorry.

Scott Benner 1:44:51
You didn't ramble. You were good. Don't worry. You were very good. I have an episode that anyway, I'll Tell you what, let's stop it. I'll tell you in a second

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 juice box, you spell that GVOKEGLUC AG o n.com forward slash juicebox. I also want to thank cozy Earth and remind you that you can get 35% off at cozy earth.com with the offer code juice box at checkout. And of course us med us med.com forward slash juice box or call 888721151 for art and gets her Dexcom and Omni pod supplies from us med you could too they also have tandem and Lee brain go check them out. I want to thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Don't forget to subscribe and follow in an audio app like Apple podcasts Spotify, Amazon music anywhere where you get your audio find the show hit subscribe or follow depends some apps ask you to subscribe some say follow whichever your says that's what you do.

#886 Yes Chef

Paul is an executive chef whose child has type 1 diabetes. We talk about Omnipod 5, clinical trials and raising a little one with T1D.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 886 of the Juicebox Podcast.

Today I'll be speaking with Paul. He is the father of a young child with type one diabetes. Paul is an executive chef. His child has been on Omnipod, five done clinical trials. And we talk about all that plus what it's like to be married and raising a child with type one diabetes. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Are you a US resident who has type one or a US resident who is the caregiver of someone with type one? Oh, if you are please go to T one D exchange.org. Forward slash juicebox. and complete the survey completing the survey helps type one diabetes research to move forward. It supports the Juicebox Podcast and it's just a nice thing to do. Plus, it doesn't take very much time. And you can do it from wherever you're sitting right now. T one D exchange.org forward slash juicebox.

This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by Dexcom, makers of the Dexcom G six and G seven continuous glucose monitoring systems. You can learn more about the G six and the G seven and get started@dexcom.com forward slash juice box. See your blood sugar, the number, the speed and the direction all in one place on your smartphone or on your Dexcom receiver dexcom.com forward slash Juicebox Podcast is also sponsored today, by the contour next gen blood glucose meter, check out the contour next gen the Contour Next One and their entire line of blood glucose meters at contour next one.com forward slash juicebox get yourself an easy to handle easy to use an incredibly accurate meter, get a contour.

Paul 2:40
interested in sharing our story and our journey. So far, it's been interesting, I kind of got to participate some trials and Omnipod five now and we were on the tandem for you know, then two year old. So it's been a whirlwind and up and down. And we have some interesting interesting stuff to share and love to hear some of your feedback and what you think of the situation and also talk about you know, the kind of the strain and pressure that being a caregiver puts on on marriage and being in clinical trials and being a professional corporate executive chef, and my son eats five things. And it's a lot to talk about and a lot to share. So hopefully it'll be some good content for other listeners, other parents and caregivers and other T one DS

Scott Benner 3:32
Oh, I'm certain it will be. Why don't we start off by you introducing yourself any way that you want to be known?

Paul 3:39
Sure. My name is Paul. 46 years old. I have a three year old type one diabetic son named Justin. married to my wife Margarita. And we've been married since 2007. And Justin was diagnosed at 18 months, and he is now a little over three, three in May.

Scott Benner 4:00
Oh, wow. Okay, so Justin's had diabetes about as long as he didn't have it.

Paul 4:05
We just passed the halfway mark. So he has now been living with diabetes longer than without. Gotcha.

Scott Benner 4:11
And you've been married? Hold on. 16 1516 years?

Paul 4:16
Yes. Since July of 2007.

Scott Benner 4:19
Wow. Today is my 26th anniversary.

Paul 4:21
Wow. Congratulations. That's uh, you don't hear that too. So much nowadays. Do you not?

Scott Benner 4:27
I don't know. You don't know. All I don't talk to anybody. I don't know. I don't hear anything from anyone. I make this podcast and I sleep. So. Well. Well, thank you very much. I appreciate I just she hasn't opened them yet. But my wife has told me this story. Uh, probably a dozen times since I've known her and we've known each other. My gosh, since probably, well, we knew each other longer than we were dating. And so I don't know we've been married. For 26 years, I think I knew her when she was 16 and 17. Like, just like I, like, you know, to say like she walked past me and I recognized her. Sure, I think I started bugging her when she was 19. So, anyway, she's 48 now. And she's told me a handful a dozen times in her life, about getting these diamond studded earrings as a child. I don't know if it was wrapped around her Catholicism or if it was a gift or something. But she, um, I guess she took them out at some point. And I don't know why people do things like this, but left them by the sink or the windowsill near a sink or something. And adios. They're just gone. Yeah. So I don't know why it never occurred to me over the years. I've always felt so bad for that little girl. You don't I mean, like, I always wished I could have like swept in and been like, here. Here's two more earrings. It's fine. Don't tell anybody, you know. So I got my wife a pair of about nice diamond stud earrings for our anniversary today. They're downstairs on the table. And I had no better late than never Scott. Well, I wasn't there the day it happened. I just don't know, over the years. But I do know, Paul, over the years. In the beginning, I was like, I can't afford this, you know? Sure. And then today, I was like I could, you know, earlier this week, I said to art and I was like, come with me and help me pick out earrings for mom. So we did that and acted fancy in a jewelry store for a little while and then got right out of there because we didn't feel too fancy. But yep. But it's nice to know that 26 years feels like a long time. I have to admit it's it's different. Like, as everything is what you expect, and what you picture and what you imagine when you're younger. It's never what happens when you're older. And I don't mean like successes and failures and things like that. Just I think just what the union means is different than what you think it is when you're like 25, you know?

Paul 7:01
Yeah, I completely agree. And that also, it's also different. Being husband and wife and then being mommy and daddy as well. That's a change that no one really describes to you very well.

Scott Benner 7:17
Yeah, no, no, my, my son's going through a tough time right now, like transitioning out of college. And it's, it's he sort of I don't know, he's been kind of private about it, I guess. And it's, I don't know, Paul, my only job in the world feels like taking care of people. And then, you know, and I do that verbally. And so when that doesn't happen, then I get I'm the least anxious person in the world. And right now today. I'm is like twisted in a knot as I've been. I don't know, since Arden was diagnosed? Well, yeah, just because I can't I can't help the way I want to help, or the way I want to help. It's not helping or whatever. I don't know. But those are not things that you have to deal with if you don't have kids.

Paul 8:05
Yeah, I can't You can't look back and tell like a 19 year old, you that one day you're going to be faced with, you know, X. y&z just doesn't doesn't relate and you don't comprehend at that age. But, you know, just it's part of adulting in parenting, I guess.

Scott Benner 8:22
Everything's on the job training.

Paul 8:25
100% Yeah. With diabetes, diabetes, as well. It's a It's all real world experience. You can, you can only get lead from do not die information from your Endo, for so long before you have to start figuring stuff out yourself and acting in the moment. So this it pertains to a lot of different parts of life.

Scott Benner 8:47
Oh, I think so. What is there a something about a saying about building the plane while you're flying it?

Paul 8:54
Yeah, I don't know what it is, though. But I understand the analogy. Yeah.

Scott Benner 8:58
I couldn't explain it well, but I think it explains itself.

Paul 9:02
Some days feels like we're, you know, you're flying while you're building the plane. And it's you're bailing out water as the plane floods as well.

Scott Benner 9:10
Right. So isn't it isn't it? Isn't it exactly like that? It's because I'm imagining three years ago, you and your lovely wife are living. I mean, your body would just say you're an executive chef.

Paul 9:20
Yeah, I'm an executive chef. I work for a corporate dining company. So we do a lot of dining for, you know, like, corporate dining for Uber and Twitter and, you know, large bay area companies with 1000s of employees. So we do on site food service for some of the larger tech and.com companies.

Scott Benner 9:39
And that's a job you really enjoy a match. I don't think that's something you can do if you don't like it for some reason.

Paul 9:44
You know, there's, I guess in the culinary world, you can, you know, there's kind of two sides to it. One you can work in public restaurant. You know, like, sure you have a downtown area that has tons of restaurants, where you can, you know, work as a line cook or even a chef and your days are like when I was in my early 20s, you know, 1516 hour days, six, seven days a week, Thanksgiving, Christmas, all that you miss all the birthdays, all the holidays, you're in there from open to close every day, and the pay is substandard. When I got married, in 2007, I was working as a sous chef at a popular Mediterranean family style restaurant. And I would kiss Margarita on the cheek when I left for work in the morning at like 630 when she was asleep, and I would get home from work at 130 in the morning, kiss her on the cheek while she was asleep in bed. So I quickly explore my options to find out you know, before this marriage starts, how can I help it succeed by spending more time. So I've ventured into the world of corporate dining. So the world of corporate dining is Monday through Friday, get in about six I leave about 230 Every day. I'm off on all the bank holidays, regular holidays. And the pay is two three times three fold of what it would be in, I guess what you would say a regular restaurant.

Scott Benner 11:22
Let's see Paul. That's my point. You got everything together. And then life hoisted you up to 40,000 feet and said, Hey, your kid has diabetes. Figure it out before we crash?

Paul 11:32
Great pretty much. Yeah, yeah. In a nutshell. Yes.

Scott Benner 11:35
Absolutely. Well, what was it like when Justin was diagnosed?

Paul 11:42
Shocking, is I guess what stands out the most but the the story leading up to it, as you've probably heard a lot of times with the thirst and then excessive Bedwetting, and daycare. He was in daycare. And so you know, he's drinking a whole lot of water. And so it's okay. So a week later, you know, he's really drinking a lot, a lot of water like, you know, 10 times as much as the other kids. And so we message our primary is pediatrician. So yeah, it's fine, whatever, you know, don't don't worry about it and message him against him. He's wetting the bed every night and attitude. He's, you know, he's just been really, really cranky. And we got to take a bath, and he's just crying and crying. And so it finally took him to go into DKA for us to you know, I guess take him in, he was super lethargic, and breathing was, you know, concerning. So we took him to a respiratory clinic. And we thought, oh, maybe COVID. You know what, whatever it could be. They did a bunch of work at the respiratory clinic. And they couldn't really find anything. They were waiting for the bloodwork to come back. And they said, well, while we have them here, let's take some urine. So they took urine. They couldn't really give us a diagnosis. So they sent us over to the pediatric emergency. And while he was kind of going through the routine of being admitted there, the doctor called me from the respiratory clinic and said that they found sugar in his urine and your son has type one diabetes, you're going to be at the hospital for three or four days. The rest is Oh, my,

Scott Benner 13:27
I'm sorry. The respiratory clinic didn't recognize the small respirations. No. Well, geez, respiratory clinic respiratory. Okay. Yeah, it's okay. So you got Wow. So you tried to find out what was going on? And nobody was able to help you.

Paul 13:47
Yeah, we reached out to our primary care and now even some, some Google or some internet search results, but man, I guess that's if I have any gripe about the situation is that you know that and I don't know, I'm not I'm not a doctor. I didn't go to medical school, but seems like if you're emailing your, your primary care, and they don't recognize that excessive thirst and Bedwetting, you know, just the classic symptoms. Maybe something needs to change. There needs to be more education, but Yeah, seems like all the classic signs. But

Scott Benner 14:28
well, don't worry. Once you educate those people, they'll move on and get different jobs. And then there'll be a whole new group of people to educate and it'll just keep sweet. and over again, oh, my God. Yeah. Well, where are you in the hospital for that many days?

Paul 14:42
Yeah, well, the thing was when he was admitted it was only one parents in the hospital at a time because of COVID until he got admitted to pick you for the pediatric emergency ward. thing. And they tried to stop me from going in was the way I'll put it.

Scott Benner 15:07
It didn't work out for them. I'm on

Paul 15:09
like, six, seven to 50. So yeah, I mean, I, I didn't forcefully make my way in, but I was in there with him

Scott Benner 15:16
and my wife, Paul, you're six feet seven inches tall. Yeah. And we've got 250 Oh, my goodness.

Paul 15:23
That's not telling me no. So many words, I'm going in with my sons.

Scott Benner 15:27
That's crazy. Come from a tall family.

Paul 15:31
Yeah, my dad was a six to my mom is was average. But yeah, there's some pipes down the lineage.

Scott Benner 15:37
Wow. So after the diagnosis, what do you think struck you first, because you have a pretty, you have a pretty coherent list of things you want to talk about. So I'm wondering what got to your first.

Paul 15:54
The the first thing was, I guess, my understanding of how much I didn't know about diabetes. So because he, you know, he was in DKA, they were monitoring for brain swelling, which didn't happen. So, which we're grateful for. But I remember asking the doctor, okay, like, you know, when is that when is he cured? Or when does he not have it anymore, so we can go home. And our whole world kind of change over the next, you know, 24 hours as we started learning more information. So I just remember feeling like helpless, like I didn't know what to do, or how to help. And then not having the knowledge or information to, to help. So helpless was the first and a real emotion that I had. And then Then came the grief. But I will say that, you know, we spent three days in the hospital probably didn't sleep very much at all. And then before being discharged, had to go to a three hour kind of crash course in diabetes management from the on site, diabetes educators, which we retained 0% of the information from

Scott Benner 17:18
Yeah, it's hard to listen. Impossible. Yeah. And remember, it's it's very interesting that on the on the first day, that you were just under the impression that there was a medical problem that would be cleared up somehow.

Paul 17:32
Yep. Yeah. Wow, that's 100%.

Scott Benner 17:35
So while they're dumping all that information into you, you're just sitting there, grieving. Confused.

Paul 17:42
Yeah. I mean, Justin was 18 months old, crying the entire time. And, you know, he's just got poked and prodded and he hadn't slept. And it was just really, really emotionally draining. And then to hear some of the, you know, the stuff that they diabetes educators were sharing. As they share more and more information, you kind of in the moment are realizing how much everyone's life is going to change. And it's a lot to take in right after what we've just learned and all the previous 72 hours. How old are you, Paul? 4646.

Scott Benner 18:27
So you waited that children till a little bit? We did,

Paul 18:30
we went down the road of you know, let's, we can either be young and not afford it or be a little bit older and afford it. So.

Scott Benner 18:42
So he tried to do everything right. And

Paul 18:46
yep, still exactly. Yeah. Yeah.

Scott Benner 18:49
Still a life game for you. And you sound like a pretty emotionally mature person. Oh, thanks. Yeah. I mean, listen, we've only been talking for 15 minutes, you might be an idiot. But for now, I think you sound like a pretty emotionally mature person.

Paul 19:07
I will. We'll circle back at the end and let me know what you think. Well,

Scott Benner 19:12
also, I've heard crazy stories about people who work in restaurants that I'm not going to ask you about because we have serious conversations that here, but all true. Yeah, right. It's a big orgy. Isn't it Paul?

Paul 19:22
Tell 100% Yeah, everything you hear is is generally true.

Scott Benner 19:27
Yeah, okay. And in the chain restaurants, the food's all prepared. They just Soviet right, like it's frozen and then they just do a lot of places do that they're not really cooking for you.

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Paul 23:43
Yeah, I guess you look at it as if you're getting a full rack of ribs with a baked potato and some vegetables and a side salad and a general and a coke for 12 bucks. You know, no one's probably actually taken the time to prepare that foods probably coming from a factory right frozen or you know in bags and they're just reheating and serving.

Scott Benner 24:06
I know it Paul told me the sense. I've never worked right.

Paul 24:11
Opposite gun the opposite side if you you know went to a local place little barbecue joint that smokes or on brisket and does all their own sides. You're like well, you know, why is brisket $27 a pound?

Scott Benner 24:24
Yeah, that's because somebody actually made it for you. If somebody woke up

Paul 24:27
at midnight and smoked, I think for 16 hours

Scott Benner 24:30
if I only worked in a diner for like a week when I was I don't remember really young. And it was just such a hustle like clearing tables and washing dishes and everything. And then I quit for two reasons. One I was I made coleslaw in a trash can. Not a trial. It was not also used for trash, but not a point, right? Like it was basically like dump all these and then reach them with your arms and turn it over and turn it over until it's coleslaw, that flipped me out, and they would feed you, but then charge you full price for the foods. So by the end of the week, you really didn't make very much money. And I didn't realize I was like a kid. They're like, You want dinner? And I'm like, oh, yeah, great. It's just wonderful. Thank you. And then I was like, I'm not doing this. So I left.

Paul 25:22
Well, at least you spent a week.

Scott Benner 25:24
I did. I did. I stayed. And I was like, maybe I can tough this out. But he's just was this girl. It was really I mean, as a kid, but it was like grueling work. So he just never stopped. And the kitchen was always somewhere between like, like viciously on fire and somewhere humid near the dishes, and just none of it. None of it was pleasant. But so, so you get out of the hospital. I mean, I have all the empathy in the world for you. Arden was two years old when she was diagnosed. But none of the technology existed then. So did they start you with a CGM? Yeah, I would imagine. Yeah.

Paul 26:00
So yeah, we were. We got sent home with the CGM. And then we were on MDI for about a week and a half, two weeks, and then we started the Omnipod dash.

Scott Benner 26:20
Okay. MDI, and were you pushing for a pump? Or are they trying to give you one?

Paul 26:27
We pushed for every we weren't. We advocated as much as we could for every piece of technology and equipment that would preserve our son's health.

Scott Benner 26:40
Yeah. How did you find out about it so quickly?

Paul 26:44
We, so we left the when we left the hospital, one of the attending physicians told us about Brave Buddies. Are you familiar with

Scott Benner 26:58
I don't know. And I'm looking it up now.

Paul 27:00
So Brave Buddies is it's pretty much an online form. For for type one, diabetics, people will give away supplies or ask for help. It's, it's, but then lack of better term, it's like a Facebook page. But it's all through email through a server. So now if you're on vacation in Orlando, and you forgot your T slim infusion set, you can post the message up there and it gets emailed out to everybody and someone in the community will have one or you know, extra cents or whatnot. That's cool. So it was initially it was a way to connect with other families who had type one diabetic children, or were type one diabetic. So it was kind of offered as an emotional support, kind of reach out to other people. And I started reading the posts and people talking about all kinds of pumps. So I looked into it.

Scott Benner 27:54
Nice. And did you find that? I mean, I'm imagining you found it helpful, or, but how was it managing? Well, I guess the first question should be did Justin have a honeymoon?

Paul 28:10
Yes. To what extent or degree is that? I don't know. It's a lot of it is a blur. But look, looking back. Yeah, I mean, he was he was definitely dumping out, dumping out some insulin overnight. Yeah, before we got on the pump, there's a lot of overnight lows followed by too much juice and overnight highs and the pump really helped regulate that and got us some sleep. Nice.

Scott Benner 28:40
This Margarita work. She does. She does. So she has a full time job. And so do you. Correct. So baby was in daycare? So then what do you do with him? I mean, now, does somebody stop working or?

Paul 28:56
No. So we, when he was diagnosed, he was at a small family daycare. When he came back home, we tried to reach out to the daycare and speak to the owner about what caring for him would look like. So we got as much literature as we could. We translated the hospital translated all of the, I guess the binder that they send you home with into Spanish. And so we went to kind of sit down and meet with them and kind of go over protocols and procedures, which we looking back at the time, you know, really didn't have a big clue to what we were doing. But kind of the willingness and the communication just really wasn't there. And then COVID hit so we just pulled him completely out of daycare and cared for him at home. Oh Okay. I was, I never, neither of us ever lost our jobs. Both of our jobs paid us to kind of work from home, which as a chef kind of seems ridiculous. But I was creating a cooking classes and soothing and Thanksgiving turkeys and prime ribs and just filming them. And we were posting it for a bunch of people to see it at work who could log in? And?

Scott Benner 30:32
Well, that's Paulette, so your company, had you create food? And share it in video so that the employees might continue to eat well, during COVID? Correct? That's really nice.

Paul 30:44
Yeah, it was a it was a way to, you know, even though we're not physically there serving you food, we can still, you know, share recipes, show techniques. And, you know,

Scott Benner 30:55
that's great. Yeah,

Paul 30:57
that's fine. So we were both home for a while Margarita eventually went back to work. And then, you know, we were faced with the decision of, you know, we were both going to need to go back to work. What are we going to do for daycare options. So we found, and this is I can't say how grateful I am for this. But we found a daycare. That was like 20 minutes away from our house. That is run by a t one D mom, her daughter was diagnosed the same age as Justin. Her daughter is now 21. She did it for the technology in New York as a single parent with three other kids.

Scott Benner 31:44
And she might know what she's doing.

Paul 31:47
She knows what she's there. Yeah. So he started there. He's currently still there. He's on summer vacation now. But yeah,

Scott Benner 32:00
that's, that's very lucky. And it just fortunate.

Paul 32:04
Yeah, it's, we're, we're so great. There's no not even words to express how grateful one person can be to have another person in their life that understands and gets it, especially when they're caring for your child.

Scott Benner 32:18
Okay, and I've stocked Margarita, she has a cool job. You don't have to say, you don't have to say she does. Yeah, but that's, that's pretty cool. So yeah, it is. Alright, so this isn't been long for you. This is, you know, 18 months to a year and a half. You're just Are you back at work cooking for people again? Yeah, we're back. Okay. And, and so this is all kind of chugging along now. And it seems like you're in a place where you're just looking for normal. I mean, cuz COVID was like, it was strange, wasn't it? Like, you know, it was somehow relaxing and anxiety ridden? Together? Yeah, I nailed it. I don't know how that happened. But, you know, it's, it's everybody's life was like the way you imagine it in a book. Like This must be how the Kardashians live. They just get exactly they get up at 10 o'clock. They make an egg.

Paul 33:15
Yeah, it's it's life right there. Right? Pretend make an egg. Yeah, lay by the pool.

Scott Benner 33:19
Go for a walk. Have a spritz. It's so like, you don't I mean that you start thinking about what are we going to do for lunch? If I screw lunch? We'll make a nice dinner. It doesn't even matter. Nothing matters. You want to vacuum? Yeah. All good, right? And then the other part of is like, I really think I'm gonna get sick and die any second now. In that, you know, in your head, and when am I gonna go back to work? And how is this all gonna go and everybody's life is on hold. Very weird. Just a very strange, we are still seeing we're still seeing the impacts of how it retarded people's progress students. You know, there's, there's a girl on here recently talked about meeting, meeting a guy and they started dating, and they started to become intimate and then couldn't see each other anymore. And then we're suddenly standing on a sidewalk talking to each other from six feet apart. And yeah, you know, just all the weird ways that the flow of life has been you know, impeded at that time. So you're probably I'm gonna guess mostly Lucky for you because you you got to deal with the diagnosis a little bit without being pressured about going to work etc.

Paul 34:30
Correct? No, there wasn't. There wasn't kind of that oh, shit moment. We had some time to process

Scott Benner 34:37
right and then then you get I am going to call it lucky, like Lucky meeting this person who runs this daycare is I mean, it's nice because can you imagine if that person didn't exist, and now you get thrust back into the world, the both of you were Where's Justin right now? You know?

Paul 34:53
I I can't I? It's hard to imagine. It's going to be even more difficult when We do the next transition into kindergarten. You know, we're we're pretty lucky right now that you know that someone else has his follow data and knows what to do with the information, you have

Scott Benner 35:13
two more years to tighten up your understanding of things too, and all that other stuff, which is great. But But you talked about in your note about a marital strain. Did that happen? Slowly? Was it very quick? Did one person try to take hold of like, take control and or how did it fall?

Paul 35:33
No, it's, you know, like most other things in our marriage, it's, it's equal participation. No one's taking ownership over anything, including diabetes management, it's always kind of been a, you know, a group decision. But, you know, there's, there's so many nuances and, and one offs and decisions to make. And sometimes you just don't know what the right thing to do is and that, you know, we, we started with the dash and then started a six month study, and he went on the tandem. And then Friday, we started the Omni pod five. So we've had some transitions, and a lot of times was transitioning from one device to another, you know, there's some kinks to work out,

Scott Benner 36:26
ya know, it's not easy. Just settings are different in the way the device acts some algorithms to not having an algorithm, it's, it's a lot. So when you say, so when you say strain do you mean? Do you just mean a loss of, of normalcy? Or do you mean actual, like, butting heads?

Paul 36:48
You know, butting heads is a strong term, but we've always been pretty free and easy in our relationship in our marriage. But there's, you know, there's never been an obstacle, you know, like diabetes or diabetes management. And it really puts a puts a test and a strain on the body, you know, not really the mind but you know, you being tired all the time doesn't doesn't help a lot in the decision making process for sure. But you know, if if he's a growing toddler, so if he's going to bed and he's getting this huge growth hormone spike, and he's shooting up to 250 and we're not think the pumps doing enough and do we Bolus Do we not Bolus and go I'm gonna Bolus well don't Bolus because it might auto Bolus. So still a lot of back and forth. And a lot of, you know, disagreements sometimes on on what to do for treatment, or, you know, he's at 76 trending down, do we give a crack? Or do we give juice? You know, a lot of it is just stressing. And yeah, it's a lot of sometimes it's not knowing what to do and thinking the other person has the answer. And you just kind of go back and forth until you're exhausted with it.

Scott Benner 38:03
For me, I find that either falls in the you really believe in what you're saying, and the other person disagrees. And that causes an issue, or you're sitting there thinking I need you to know because I don't know, their thing. Yeah, I need you to know, because I don't

Paul 38:18
it's definitely a lot. A lot of the you know, when somebody asked a question like, oh, you know, he's, he's training high. Should we give a correction and you're expecting the emergency? Yeah, probably a quarter unit should be good. And the other person goes, I don't know. And then you look back then and they go, I don't know. And you go. Okay, well, I guess we'll just stare at our Dexcom for another half hour and see what happened.

Scott Benner 38:39
Let's ask Justin what he thinks. Care. Hey, buddy, just grab this pinky. If, if you want to die now. It's, it's ridiculous. It's it's a lot of stress and not for nothing, you're in a specific situation. Meaning you, you waited till you were older. And it sounds like for the most part, your life was going pretty well. So yeah, not a ton of speed bumps. And then you get you know, then you get a I don't know, it's not just a speed bump, right. It's a it's a mountain. And you're and there's no input from anybody about how to do it. It's terrible. It. I don't know. I feel like I can't remember it anymore. Yeah, and yet, I feel like I understand exactly what you're talking about. Because we had all of those situations come up, like, Come on, just tell me what to do. What do you want to do? I don't I don't know. And the other thing is, my wife is such a bright girl, you know what I mean? And, and I calendar, so much like she's one of the few people like I really trust with her opinion, you know? And then all of a sudden you turn to her and I'm like, I need your opinions. Like I don't have an opinion.

Paul 39:49
Yeah, I feel the exact same way. Margarita has always been the, you know, more studious of the two and I've I guess more street smarts for lack of a better term, but together, you know, it's very cohesive and it works extremely well together. You know, where she's more analytical and more, you know, whatever, the quarter unit, whatever, it's fine. But together, you know, that kind of meshes together well, in everything that we do in life, not just not just diabetes.

Scott Benner 40:19
Yeah. Yeah, I got it. So tell me a little bit about this. You participated in a study already?

Paul 40:27
Yeah. So we participated. First of all, shout out to Dr. Bruce Buckingham at Stanford. Been doing diabetes research and education for over 4550 years now. He's a retired pediatric Endo. So we were in his study for FDA approval of the T slim and Justin's age group. So, six months, we were on the tandem. And it was, it was good. The the control IQ worked really well. It helped with overnights we probably went through, you know, months at a time where we slept through the night. Which is amazing that he Dr. Buckingham is the kind of person where he's taken zoom calls at 930 10 o'clock at night after Justin is asleep to review settings and data. And we had an issue the other night with Omni pod five. And even though he's no longer we're no longer in the study. He helped us transition over at a zoom call with him at like 130 in the morning. So he's just really committed and it was a really, really amazing experience. We're very, very grateful to have had access to that the tandem T slim for for his age group. Yeah. I will say it's been since it's Wednesday now. He's been on the Omnipod. Five since Friday. I do not miss the tubes, or fanny pack that you would have to wear with it at all. Yeah. I hear that. But the control was was fantastic. Right. I think for the last 90 days. It was like 86% in range. So you can't complain for a three year old?

Scott Benner 42:22
No, of course. What was the study for to get? Approval approval for lower ages?

Paul 42:28
Yeah, exactly.

Scott Benner 42:29
Okay. That's, that's great. Actually, do you know, do you know when they're did they ever tell you when they thought the study would be done? The study is done. It is done. So they have enough data to move forward. Right. Oh, that's cool. That's very good. Okay, hold on a second. You wrote here. This is interesting. You just wrote poop and bathing. And how it affects blood sugar's Oh, baby, I think I get but I want you to well start with bathing. What do you notice with your son?

Paul 43:04
What do we know? So by the way, poop and bathing, it's not Oh, one it's two separate occasions. Imagine in the bath? Yeah, yeah, I imagine. So bathing, if we bathe him. So generally, he'll have dinner 536 o'clock, then he has a bath about seven 730 in bed by 815. So if we give him a bath, he will generally say he's a 150 takes a bath. He may go up to 190 and then back down to like 130 After the bath. And we've you know, it's been explained to us and the waters hot and Slin surface of the skin and all that. But sometimes it doesn't happen. And sometimes it does happen. Sometimes. The finger sticks match and sometimes they don't match. So I'm just interested to hear other people's experiences as well.

Scott Benner 44:03
Yeah. Does it ever seem like he's like playing in the bathtub like excited? Could it be adrenaline?

Paul 44:10
It could be he's hot and cold when it comes to a bath. Some days. He's wants to take a bath for a half hour and some days. You drag him in there kicking and screaming to take a bath.

Scott Benner 44:22
Sounds like everybody I know. Exactly. Right? Well okay, well, I mean, listen, they the there are people who tell you that the hot water makes their blood, their blood sugar go up. There's people who tell you that the hot water makes your blood sugar go down. You know, I always think of it as maybe you get in the shower and relax and your blood sugar goes down. Right or maybe you get in the shower and I don't know. Think about the world and life and it upsets you and you know like I don't know like I don't. I do know that Jenny will talk specifically about like your blood. Like how How insulin works in your body, and, and the temperature that your body is at. But I mean, it seems crazy to me to think that in 10 minutes, something could change so drastically with the temperature of your body that your blood sugar goes like, like, like firing one way or the other. Like, it always seems to me like it's got to be something else. And then there's times that Arden will take a shower at the end of the day, and she'll get lower. And there are times that she takes a shower at the end of the day and her blood sugar goes up. And I so is the shower. Really part of the equation? You don't even need the mystery, right? Yeah, right? Or is it just, you know, one day she ate a larger meal that she didn't Bolus well forgot in the shower in her blood sugar went up in one day, she did a great job with her blood sugar. And she got in the shower and relaxed and her blood sugar went down like I don't know. I really don't. I'm not Yeah, we

Paul 45:55
we worked with Integrated diabetes. And we've met with Jenny a couple times. And it's, you know, everyone's experience is different. And I think it's just one of those. You know, like you said, what Jenny talked about what the hot water and even were in the study, we were talking to the endocrinologist and said, Yeah, you know, if you've recently Bolus and you know, insulin is still close to the surface of the skin that may have this effect and that effect, but at the end of the day, when, you know, he takes a bath, he's obviously when he was on the tandem, he's disconnected from the pump, so he's not getting any basil. So we will see, regardless of if the spikes are one way or the other during or after the bath, we do know that about a half hour later, he'll start to trend up because of missing basil. So we'll have to Bolus half hour of basil

Scott Benner 46:48
now that that, obviously, the first thing I should have said that I didn't. But yeah, you're you're on a two pump and you were disconnecting. So I don't know, man hit listen, here's what I'll tell you. It's diabetes isn't easy.

Paul 47:04
She said, right, that show about a show about it?

Scott Benner 47:09
I think you I think the key is, I mean, I guess the the key is to see what's going on, learn from it, try to anticipate it next time and stay a little bit ahead of it. I do really wish that. I don't know, there's part of me that thinks the podcast should be 20 minutes long, one episode, and it should say, hey, type one diabetes, it's difficult. Learn how to use insulin, stay flexible, you'll be alright. Like you don't even like there's because I think that applies to almost like at the beginning of the conversation where you were talking about, you know, the impact of one thing and you're like, I think you said like, well, it really is like that for everything in life. And I think that I think that's right, for diabetes, too. I think that in the end, it's about using insulin well. It's about timing and amount, and staying flexible enough that you don't get stuck in an idea to the point where you say, I have to know what what what is this that's happening? You know, instead just saying, look, it's going to happen. And here's how I fix it. If it goes one way, and here's how I fix it, if it goes another way. And until you can come up with a real answer, you know?

Paul 48:15
Yeah. And Margarita is very, you know, cynical in that way show. Where I, the way my brain works is, you know, I mean, I work in a kitchen. So my, my movements and my actions in the kitchen are very methodical. And when I do something, I expect a certain result. If you've braised beef 100 times, and it comes out wrong once I'm going to overanalyze the situation and find out what happened with diabetes, that doesn't work. You just need to correct and move on.

Scott Benner 48:48
Yeah, he's got another piece of meat and go again.

Paul 48:52
Yeah, well, what if you don't have any meat? So yeah, it's, it's, it's been a little bit more difficult for me to, you know, accept some of the, you know, high highs or low lows, and just, you know, correct and move on. I always find myself, you know, wandering and anticipating. Not so much so I can figure out, you know, what went wrong, but kind of just to be better prepared for the next time.

Scott Benner 49:22
Yeah. Well, listen, let's, you do have to do that as well. You know, you have to you have to take in the data and look at and step back and look at it. Do you ever come up with answers? Do you ever think oh, I know what happened.

Paul 49:35
Um, yeah. I mean, I think I think I do. And until something happens that disproves it, so yeah. Then we start from scratch again. But yeah, I mean, it's, it's, you know, it's a learning experience. And I do think that knowledge is power and, you know, just kind of recounting what happened, and trying to do better Next time,

Scott Benner 50:01
how is the diagnosis and the ensuing time? How's it been for you personally? Can you disconnect Justin from the conversation and talk about yourself? Rarely. I mean, do you ever get to think about how you feel about it?

Paul 50:17
Yeah, I mean, I mean, I've processed it. We're, we're talking to a therapist now that we meet with. But it's more for family therapy. But, you know, just as myself it's, it's hard to disconnect. You know, I'm, I'm still sad. That's for sure. Yeah, still, still heartbreaking. But, you know, I need to be strong for him and for my family. So a lot of times, you know, however, I'm feeling gets pushed aside, which is okay, I'm not, not a very selfish or self centered person have always had the giving and caretaker mentality in me. And I do it, you know, for living through food, feeding other people at work. So kind of second nature in that in that

Scott Benner 51:14
aspect. Yeah, I was gonna guess that. Yeah. Well, the family therapy sounds like a good idea.

Paul 51:21
It is. And a lot of it is, you know, centered around how to get Justin to do things. I never, in my adult life, had heard the term threenager before. Wait a minute, but guess what, Scott? Yeah. You don't know about threenager?

Scott Benner 51:41
Justin difficult. Are you telling me the kids kids hard to work with?

Paul 51:45
Yeah, a little bit rough around the edges. Yeah. So aside from the terrible twos, apparently, there's also a threenager. So it just kind of an extension, his twos weren't weren't that bad. But the threes are a lot of nose, obviously. But it's just everything is, everything's a challenge. Whether it's brushing your teeth, or taking a bath or going to bed or getting dressed, it's all it's all. What we've come down to find out is having him be his choice. So we worked with the therapist and say, you know, like, bath time, bath time was always a struggle. So she's like, Okay, well, you know, make it his choice. Let him choose. You know, what kind of toys he wants to play with blow bubbles, play music, have a dance party. And so you know, here we are. He's in the living room crying and we're dancing listening to Blippi in the bathroom. So

Scott Benner 52:45
46 years old, 672 150 pounds? Let's not.

Paul 52:49
Yeah, I'll send you a video. No, I don't want to say it.

Scott Benner 52:55
Yeah, you know, they're nice, like three times in the first 25 years.

Paul 53:00
Oh, three. So I got I got a few more to look forward. So you

Scott Benner 53:03
know, listen around. 678 that can be fun right there. You know, four years old, really cool. Boys, prior to puberty or fun 11 1011. And don't

Paul 53:22
get me wrong. I always like to use a sour patch analogy, you know, sour on the outside, sweet on the inside. He's an angel when he's in a great mood. And he's having fun is the greatest child on the planet Earth. But then the complete opposite is true

Scott Benner 53:38
as well. Does any of this correlate with his blood? Sugar's?

Paul 53:42
No? No. I mean, obviously. I mean, he's, he's, you know,

Scott Benner 53:46
really high. Yeah. Well, the Pro, I think,

Paul 53:49
I think it's a double edged sword. I mean, we've done we've put in a lot of work to make sure that, you know, he's in a good percentage, good amount of time and range. He rarely ever, you know, goes really high or very rarely goes really low. So, you know, he's used to having, you know, he's used to being in range. So, when he's high, it's, you know, for for a long, longer period of time, it's noticeable. Yeah. But he can be 100 Straight, take a bath and, you know, think the world's gonna end

Scott Benner 54:24
right. And I do not want to bum you out. And I'm sure that this isn't the case. But have you tested thyroid function?

Paul 54:30
Yeah, we can see thyroid and celiac recently.

Scott Benner 54:33
Okay, good. Would you get you remember the TSH for the thyroid? I do not know. Take a look at it if it's over two, but they told you it's in range. Go back to them. Okay, all right. Let's see. What else do we have here? Paul, you're a delight. I didn't realize this is gonna be so much fun. I never know how the guys are gonna go. Oh, really? Yeah, I love talking to guys about it. But sometimes People are like, they're still kind of closed off. They're like classically men, if that makes sense. And yeah, I understand. Yeah, you're more forward facing which is really, which is nice. But you're your wife so your wife's in the, in the in the podcast Facebook group, but you're not.

Paul 55:16
I am not I don't I don't care to partake in modern social media.

Scott Benner 55:23
I don't mean, actually. You wouldn't know it part of my job. So there's the I like the input from people. And I like I like seeing people help each other all all the good stuff about it. I love. Yeah, but you know, I'm 50. And exactly, you know, not like, if you if you put me on a desert island, you were like, Listen, you can have social media or I don't know, a television, we're only leaving one of them. I'd be like, Oh, just leave me the TV. I'll be.

Paul 55:54
Yeah, I mean, it has its you know, it has its it has its purposes, but you know, I'm not not interested.

Scott Benner 56:01
But does she come to you with things she's learned online? Oh, of course. Yeah, of course. And you've been helpful?

Paul 56:07
I do. I find it helpful. You know, sometimes the stories on there are heartbreaking. And, you know, I don't know if I want to read heartbreaking stories every single day. But you know, there's also successes on there. So couple people that we've connected with and had playdates that we've met through the group and whatnot. So I do see, you know, there is there is value to it. But with Well, I think with anything in social media, it's it's always more negativity than positivity. So I choose to stay away.

Scott Benner 56:39
Well, I think my Facebook group is more positive than negative. But other than that place, I completely agree with you. Of course, I met yours exclusive course, of course. And the the, so I get people's notes privately. Some of them are, are difficult, you know, I'm looking at one sitting here now like that I have to answer today. And it's just a person who wants to come on the podcast. And they said, like, I'd like to be a guest. My daughter has type one, and Down syndrome. She's 12 and has complex health conditions. And then, you know, I'm reading on, like, trying to pick in what this is, I'm already at the point where I'm like, okay, you know, she said, she dropped her a one C, you know, I'm like, great, like, she loves the podcast wants to come on and talk about what's going on. And I'm like, Alright, I got it. Right. Like, I want to say yes to this, but I'm going to keep reading the note because it just seems, I don't know, I it would seem wrong not to just read the entire note. And at the end, at the end, she says that she just had a stroke, and she's using a feeding tube now. And and you read that in like, okay, like, like, as that's so hard just to hear. But imagine living through it.

Paul 57:59
Yeah, I mean, yeah. I mean, I hear things like that my heart goes out to her and her family, right? That, you know, makes what what I'm doing seem almost easy, in a way. And so it's like, it's it's all about perspective.

Scott Benner 58:15
Yeah. And so that's exactly it. Like, obviously, I want to speak to this person, why not to hear not to hear a terrible story about her child's health. But because it's very possible that this woman has a perspective on life that the rest of us don't 100% And I want to hear that. But then hearing the story in our mingled in it is, it's difficult, you know, it's, you have to tell the story, so that people understand where their perspective comes from. You can't just have her on and say, Look, trust me, this lady's life is harder than yours. Let's listen to what she has to say. Now, it just doesn't work that way. So you lay out the story. So now I've read the email. And I'm like, I'm also a real person, Paul, you know, and so not that it matters. But this has not been the easiest time of my life right now. And so like, I'm dealing with my own personal stuff. I have family, too. You know, people in my life are sick. There are people in my life who are, you know, everything, all the things you can think of, I'm I love somebody that has all those things, too. Or I have them. And then you get this note, you're like, wow, so I understand you not wanting to see it. And I don't think I don't know if it sounds harsh, but if if I didn't have this podcast, I don't know if I'd want to see this email either. You know, so,

Paul 59:36
yeah, I mean, yeah, that's, I will listen to the episode and I will take something away from it. But I don't I don't want to be exposed to something every day. Yeah,

Scott Benner 59:52
it's to me. Well, I think the one here might have talked myself out of listeners here if I'm not but I think the I do think the one thing that a modern like this modern life allows, is it gives you access to so many people's stories, and so much access to news and things like that, that I don't know that our brains are meant to know what's happening in, you know, the trucker strike in Canada and a shooting in Kentucky and, you know, a warlord and someplace killing a group of people. And I don't think we're supposed to, like, consider all that stuff. Seems like a little bit much. Yeah. You know, because especially when you have no agency over and like you talked earlier, one of the first things that hit you when your son was diagnosed is a feeling of helplessness. So what stops me from hearing about people being treated poorly in I don't, Australia, and now I on some level feel helpless about that. It's just, you know, I mean, I don't want to live in the middle of the woods for I don't know what's going on anywhere. But we're exposing ourselves to so much stuff. And everything feels like it carries the same wait for some reason, like from like, like, I my social media this week. I'm not gonna lie, my social media this week. What is this guy's name? Give me a second. I'm gonna figure it out. It's completely ridiculous. I could just say. Okay. I am in a I am at a point now where I've been made to feel bad for the Cubs catcher. He's had a tough couple of weeks, Paul, because, yeah, Wilson Contreras. It's had a tough couple of weeks. Everybody kept saying that he was gonna get traded, and it was stressful. And then he didn't get traded. It's been hard on him. And I've read like three blurbs about how hard it has been for him. And like so like, don't get me wrong. Like I'm not walking around my house like punching holes in the wall going so unfair how Wilson Contreras this beach? Not him. Poor guy. This guy. I don't know. What is he? He probably only makes I should look just to make the story fun here.

Paul 1:02:15
I wonder how much he makes?

Scott Benner 1:02:17
Let's find out for a second. Well, listen, see, here it is. He's a young guy. Wait, he's 30 years old. But he isn't making enough money.

Paul 1:02:27
I think the league minimum is like 350,000.

Scott Benner 1:02:30
Yeah, I can't believe him about the same. He's only making a half a million a year. So the guy is being treated a little poorly or guy. But but but but you know, like, here he is the guy making a half million dollars here. He plays baseball. And my social media set me up to feel badly about it. Yeah, and I was like, now did I take the bait? I gotta be a little bit. It's in me somewhere because I'm aware of it. Like when I reached for an idea, it popped into my mind. I'm not walking around. Like, you know, I'm not I'm not getting ready to overthrow governments so that Wilson gets paid correctly and depends on where he belongs and all. But um, it's still it's it's in the back of your head. Like it's it's like a pile of dirty laundry. Like a for everybody's woe is a sock. You don't I mean, like, eventually it goes up to the ceiling. And it's overwhelming. I'm like, I can't do all this laundry. I can't. I don't know how to help Wilson. You know what I mean? My son just graduated from college, he's having trouble transitioning. I don't know how to help him. My daughter is getting ready to go away to college. I'm assuming she's, you know, putting on a brave face. And she's excited for a number of reasons. I also imagine she's nervous for a bunch of reasons. You know, like, at this point, it's my 26th wedding anniversary. I just left my wife's gift on the table downstairs because I couldn't find five seconds to talk to her yet today. So yeah, you don't I mean, like it's, uh, I don't know, I don't think it's important for me to know everything is happening in the world. True story, that's all anyway, went a long way for that. But now we know about poor Wilson.

Paul 1:03:58
We do struggle is real. Yeah, by the way, here,

Scott Benner 1:04:00
here. Let me tell you what Yahoo Sports says. Okay, the club's handling of Wilson is a Contreras, at deadline is shameful. Can you imagine it's shameful. I almost want to click on this link to find out why it's shameful.

Paul 1:04:17
Well, if you click on it, then that means that you're interested in SEO get more on your feed now. So

Scott Benner 1:04:21
I know and I know I've done it. I've already done to myself. But But I mean, I mean, honestly, shameful. Is that not a pretty harsh word? Like I use the term butting heads earlier. And you were like, That's too harsh. Yeah, it's too aggressive. I mean, I don't know. I just I don't know. And I'm not making fun of athletes. He's a person too. And I'm sure it was difficult for him actually, like, let me take that back. I'm gonna take the whole thing back. I'm sure it's been difficult for Wilson Contreras and not know where he's going to be when he wakes up on Wednesday morning. I bet you that is not pleasant, and I don't think it matters how much money you make.

Paul 1:04:59
I mean, Worst case scenario, he has to get on a first class flight somewhere,

Scott Benner 1:05:03
it's going to be bad. Like the, the guy that I don't know, usually carries his bag probably won't be there. So, but I'm just saying that I don't need to know about it, that's all great. But there are some things that you learned that are helpful. So I don't know where the line is, I don't know if we're gonna mature. And, like, you know what I mean, like, I don't know, if like one more generation removed, we'll know how to ignore the parts of all this, that that aren't important. Or if this is just going to be a thing that people aren't built for. And it and it it. It weighs heavy on us for a long time. I have no idea.

Paul 1:05:43
But there's there's just, there's just too much. Too much information everywhere. Yeah. And you know, you're almost in a position where you have to pick and choose what you want to care about.

Scott Benner 1:05:57
Right? Yeah, no, I even like politics is such a great example. When you're younger. No one cares. You don't care when you're younger than No, but when you're younger, you don't care at all, then you hit an age where you do care. And then you hit an age where you go, Listen, I don't know how many times I'm gonna hear the same story. It's just changing. Like, like, the the nature of people hasn't changed in my lifetime. I'm going to ignore this again. It's, um, you go through seasons for certain. Alright, so what is your what's your favorite thing to make? Well,

Paul 1:06:30
we're in California. So I have the luxury of using what seasonal so there's not really one particular favorite thing to make. It's just working with what seasonal and it looks and tastes the best. So we're kind of spoiled, where it's a pretty, pretty good climate here in the Bay Area in California. So we have hundreds of farms within 150 miles of the kitchen. So

Scott Benner 1:07:00
let's get like an eclectic mix of things that you can work with.

Paul 1:07:03
We do I recently started a smoker program so we we feature something smoked every week, whether it's brisket or Tri Tip or St. Louis ribs. So yeah, we talked to work into buying a $5,000 Yoder Smoker. So I get to play with that at work.

Scott Benner 1:07:25
Is that pellets? Or is that would know what wood fired? wood fired? How hard is that to figure out how to learn how to do?

Paul 1:07:36
How hard is it?

Scott Benner 1:07:39
Like how long does it take you to figure out how to get the fire burning? Right?

Paul 1:07:42
Oh, no, three years? There? Yeah. Yeah. It's it's, it's a process like anything, you know, you have to learn it and understand it and you think you're doing everything right. But then you have the wrong kind of wood because the woods wet. So then you got to find better wood and you finally get the wood but then the beef you got it's not that great. So on and so on. So it's like anything in life, you know, you have your your trials and errors.

Scott Benner 1:08:08
I only have a pellet grill, which I bought during COVID. Because I was like, What am I going to do? Because boredom? Yes, I'm like, I'm gonna cheat. I'll learn how to do this. And I basically, I guess I use it for some, like basic ideas, but it's amazing how well it works like from like, you know, like a pork but just for pulled pork. I mean, amazing. Not difficult. I buy. Usually I grab a couple of steaks, and soak them and then just slice them up. As I as I eat them. Like I don't even like eat, I don't even make the steak and then just bring it inside needed. Like I have a little bit of it and like that was good. And then I put it away and then I'll yank it out every day. And maybe just take a couple of slices off it throw a little like, I don't know, pink salt overtop of it and eat it with something else. It's amazing. Once you understand how important the time it's just time and temperature. Yep, yeah,

Paul 1:09:00
it's it's really all it is. And the only difference that my preference is to use an offset smoker. So pellet smoker. You just don't get as much of a pronounced smoke flavor. It's fairly light. Yeah, with a wood burning offset smoker, you can get that that deep smoky taste. We've been trying a lot to imitate Texas barbecue, so just kosher salt and 16 mesh black pepper on your on your protein and then it's all about time and temperature.

Scott Benner 1:09:31
Yeah, really is love. I didn't have somebody with deep pockets that I could snuck her into buying me a smoker, so I had to buy it myself like a true story. Yeah, I'm sorry. Don't be sorry. I mean, I'm proud of how you've accomplished this. I can't believe you got your boss to buy anything that seems seems like a heavy lift no matter what.

Paul 1:09:49
Yeah, I mean, it's. It was I've been working on this purchase for quite a while and the general manager who was Leaving, kind of pushed it through before he left. And so

Scott Benner 1:10:07
I say he's like, Well, this won't fall on me because I'll be gone. So sure take your smoker. I would take that that sounds right. All right, I. So I'm gonna let you go. But I want to check first, if we've talked about everything you want to talk about, then I want to ask you one other thing.

Paul 1:10:25
Um I think that the kind of the only obstacle kind of new thing in our life is starting the Omni pod five. And seems like for anyone else who's just started, I just like to share a little bit of feedback if it's okay, no, please. So we started Friday, today's Wednesday, the first pod failed. The first pod failed Saturday night. We thought that it was the algorithm learning but by the time he hit 300, we pulled off the pod, gave him a manual injection, and then started a new second pod. He did throw up twice, so we were in close contact with his Endo. But we decided to manage it home he had 2.9, where his ketones via blood. An hour later, they were 1.9. And by the next morning, they were point six. So I mean, we were able to manage it at home. But the algorithm is better on the second pod. It is learning. I think I will say that with any automated insulin delivery system, I haven't found and this is our third different from pump from dash to tandem to T slim to Omnipod. Five. So we haven't found any of them that can handle hormone rise and a three year old. So there's been mean from going to 86 89% in range to you know, hitting the lower 70s. Now, because he's high for four or five hours overnight, as our algorithm is, you know, learning. So to other people or parents out there that may be experiencing kind of the same thing. The algorithm did better on the second pod, and we're hoping to see improvements as it as it goes, we changed the next pod. Yeah,

Scott Benner 1:12:34
yeah, this, your episode will come out long after this happens. But I have three episodes that I just recorded with a CDE. And we put together a list of things to talk about, I got the list from the people in the Facebook page. And then the the list was given to on the pod. And they went over it and made great sense of it for me. And then we went back and I had the conversation with the CD, it's going to come out in three parts. But I think the takeaway from the pod five for me after hearing the conversation was settings are very important. Entering in with basil and Bolus, it's near 5050. A day is very important when you're starting the pod on the first one.

Paul 1:13:22
The first pod was like 3070, basil to to Bolus and then the second pod day one was like 5347. And then yesterday, it was like 4951. So yes.

Scott Benner 1:13:38
And what I meant was that the your initial settings that you put into the pod is where the pod begins to learn. But then it stops, listen, it stops taking your settings into account very quickly. But if you but if you're a person who, for instance, is under basil and over bolusing or over basil and under bolusing, or something like that, that's going to throw off the amount of time it takes the algorithm to learn things. I think the other thing I learned was that you still that you still have to manage insulin Well, like I think people have an expectation like that this thing's automated. I think they think this about all the automated systems, but it's automated. It'll just do it. And that's still not the case. You know, you have to Pre-Bolus your meals, you have to you have to get your carbs counted. Pretty right. You have to understand if there's going to be a fat rise 90 minutes from now that the algorithm doesn't know that. You know, that that kind of stuff. And, and you have to understand that it's not it's not super aggressive. So when you see a rise that comes out of nowhere, it's going to treat it like it would treat anything else. And then if suddenly, hormones is a great example, hormones are hitting like food. So imagine if you ate and didn't tell it you ate. The same thing happens when the hormones come

Paul 1:14:59
in Yeah, and that's exactly what it looks like. Yeah. You know, when he's, he's an avid milk drinker. So if we Pre-Bolus, you know, 1520 minutes, because we know when he drinks six ounce, the milk is probably going to go up 100 110 points, even with the Pre-Bolus. Even if strong, you know, like, almost a two unit Pre-Bolus for, you know, 30 carbs and 11 to that is milk, right? You know, it's really hard to avoid that spike. So unless you split the milk, but then when he goes asleep, you see that kind of similar like, plus 11 plus 12. You know, as he falls into that deep sleep as his hormones are kicking in.

Scott Benner 1:15:40
Yeah, wait, oh, wait, oh, what happened here last night, happens to you. It's, uh, somebody grabbed soft pretzels yesterday, and they just sitting in the house. And it must have been like, 11 o'clock or so. And I said to Arden, Hey, your blood sugar's drifting. And I was like, There's something about the angle of this line that tells me it's not stopping. And I know you're only 100 now, but I think this is gonna go 195 90 Like, I think I think in a half an hour, you're gonna be 65. Like, I just don't think, you know, I don't think the algorithms gonna catch it. Like, it's the, it's what I'm saying right now. And she's like, Oh, yeah. So she of course, waits too long to have like a small snack. And then, you know, she grabs some stability, but she grabs it at like, 70 instead of, you know, 90 where it could have been, and she just didn't flow. Yeah, had she just eaten it 20 minutes sooner, she would have grabbed stability at 90 and maybe gotten to 70. Instead, she held at 70 and was gonna get lower again. She starts getting lower. And she's I hear so I got it. I was like, okay, she eats an entire soft pretzel. Bolus for like, pretty aggressively, like she didn't do bad. And, like an hour later, like I was, I went to bed. I was like, I'm good. And Kelly was still up working. And she's like, Hey, I need you to wake up. She's like, I've been trying to help art and but like it's not working. And artists blood sugar went to like, 250 off of that soft pretzel.

Paul 1:17:15
Yeah, and pretzels are impacts just in the same way. They are hard and fast. Right? Right.

Scott Benner 1:17:19
So I just, I had her change some settings, and you know, with sleep, and when I woke up this morning, she was 90. So it all worked out. But you know, it's tough. And just imagine if it was something else adrenaline, pain, hormones, like these kinds of things. I think what people need to understand is that right now 2022, you can get tandem control IQ, you can get on the pod five, you can get the Medtronic device, you can get, you know, do it yourself loop, and the three, the three retail devices are going to be less aggressive, I guess, then you because you can make the loop be more aggressive, right, because it's more, it's more user definable, you can tell it to start correcting it a lower number, you can tell it to auto Bolus 10% 2030 4050 60% of what the it thinks, you know, you're a little more, a little more control over those settings. Whereas in the other ones, they they work the way they work, and they work amazing. There are for the most part going to keep you from getting low. And, you know, they're going to do a pretty good job with meals as long as you understand meals. And as long as you understand when the algorithm just I don't know what the word is, but it's beyond its ability at that point, you're gonna handle it, you're gonna have to jump in and do something. And, you know, once you learn that, I think you're good. I just I don't I desperately don't want people to think that. These things are just like, oh, you put it on and everything's like fine. Your blood sugar will be 93 the whole time. You don't I mean,

Paul 1:19:04
by no means is it a set it and forget it kind of thing. It's a drastic improvement from 10 years ago, but it's that that still needs to be managed. And I mean, I think since we've started the Omni pod five, on Friday, I've probably been up till 12 One o'clock in the morning just trying to see how aggressive it is and how much insulin it's giving at what rate because I want to understand it and know what it's doing. So if I go to make a decision and override to Bolus that I understand what it's doing and how it's working, yeah, so yeah, I mean, there is a learning curve to it. Don't let me all the algorithm has its learning curve while it's learning. You know, I'm trying to learn as well so I can manage manage as best I can to

Scott Benner 1:19:54
and from what I hear from people weeks from now, it'll be better than it is today for you

Paul 1:20:00
I think the five week mark is the kind of buzz that I'm hearing

Scott Benner 1:20:04
from people. Yeah. Now, I've heard all kinds of different stuff, but and so even what you're learning might change. But the truth is, and people, you're going to hear me say this a million times over the next year, for the vast majority of people using insulin, you put an omni pod five on them, and their life is going to just improve. But 100% Yeah. So, you know, I also believe that it's, I did it for the first couple of days that aren't used on the pod five, I was like, Well, this is, you know, I started comparing it to loop. And then I just realized I was like, they're not the same thing. Yeah, it's different. Yeah. So I'm, I let go of that very quickly. They're not the same thing. They shouldn't be compared to each other. If you want that, like, you know, if you if you're looking for that, like drill down type control like that, then you you need to look at that, do it yourself product. And if not, then, you know, this is what these things do. And I imagine they'll get better over time. Of course, all of them. So anyway, right. I think it's a, I think they're amazing. I think I think if you can afford them, you should try them. That's for sure. Agreed. All right, Paul. I kept you too long. So I can't ask you about the restaurant orgies in the massive drinking and drugs that I'm assuming you've seen through your 20s and 30s. working in restaurants but

Paul 1:21:22
ruin but invite me back for an after dark episode we're talking about if you had

Scott Benner 1:21:25
diabetes, you'd be right there. See where you're getting let down by not having diabetes, you cannot come back on. And my son said to me recently, she's like, Are you always going to just interview people with type one? I was like, people with type one have regular lives too. It's plenty interesting. Don't worry.

Paul 1:21:41
Don't worry. Yeah,

Scott Benner 1:21:42
don't worry. It is anyway. All right. Well, thank you so much. I appreciate you doing this.

Paul 1:21:46
Thanks, God, thanks for everything that you do. We're appreciative. And I didn't mention in the beginning of about a week after diagnosis, we found your podcast. And I think two weeks after that, we started with Integrated diabetes. And it really changed our kind of our philosophy and our, our way of managing diabetes. So thank you very much.

Scott Benner 1:22:11
It's my pleasure. I'm so happy you found it. 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 forward slash juicebox. you spell that GVOKEGL. You see ag o n.com. Forward slash Juicebox. Podcast want to thank Dexcom and remind you to go to dexcom.com forward slash juice box start with that G six or G seven, sensor. And of course contour next.com forward slash juice box get yourself an accurate meter. It's easy to hold easy to use, and has Second Chance test strips contour next gen at contour next.com forward slash juicebox. I'll just remind you also to check out the private Facebook group Juicebox Podcast type one diabetes on Facebook. Although there are people in there with so many different kinds of diabetes, I should probably change the name. It's for everybody. Juicebox Podcast, type one diabetes on Facebook. If you're new to the show, please subscribe or follow in Apple podcasts, Spotify or anywhere you get audio. And if you've been listening for a long time, Please share the show with someone who you think might also be interested. Oh, and if you're really loving it, leave a five star rating and a beautiful review. Wherever you listen. Sharing the show is how it grows. So whether it's through a review, or personal conversation where you say, Hey, I think you should check this out. Tell your doctor about it. Anything, anything to help the podcast grow. I very much appreciate and of course supporting the sponsors is why the show is free and plentiful. And also why the Facebook group is also free and well managed. You guys are making that happen with your really kind support. So thank you very much. I hope you enjoyed this episode. I'll be back very soon with another