Scott Benner 2/2/23 Scott Benner 2/2/23

#840 Managing Burdens

Erika Forsyth is an LMFT who has type 1 diabetes.

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

Scott Benner 0:00
Welcome back friends. This is episode 840 of the Juicebox Podcast.

Today I'm welcoming back Erica Forsythe. Of course, you know Erica is the licensed marriage and family therapist who I speak to frequently on the show. She's in California. But if you live in California, Utah, Oregon or Florida, you can use her services. Check her out at Erica forsythe.com. Today, Eric and I are going to talk about burdens and how you can help to alleviate them. 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 are becoming bold with insulin. If you have type one diabetes, or are the caregiver of someone with type one, filling out the survey AT T one D exchange.org. Forward slash juice box would go a long way towards helping people with type one. It'll take you fewer than 10 minutes. It's absolutely HIPAA compliant and completely anonymous. He one day exchange.org forward slash juicebox. Take the survey

this show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. Today's episode is also sponsored by ag one ag one is from athletic greens. It's the green drink that I have every morning. And you could too. When you go to my link athletic greens.com forward slash juice box, not only will you get your first order of ag one, but you'll also get a year supply of vitamin D and five free travel packs. Athletic greens.com forward slash juicebox. Erica, welcome back.

Erika Forsyth, MFT, LMFT 2:10
Thank you. Thank you for being here.

Scott Benner 2:12
Thank you, I appreciate you being here. We talked last time when we were recording about this episode, and we said we're going to talk about how you can share a burden that you're carrying. And I don't know a lot about this. So there's going to be a lot of talking from you, and not so much from me. But my expectation here is that people do a pretty good job of hiding what they're going through. And that you think you're doing a good job of dealing with it. But you're not if you're suppressing it. And how do you recognize that there's too much going on in your life and find a way to I want to say offload it. But that seems wrong, right? Because you're putting it on someone else maybe. But then how do you how do you do that? How do you first I guess how do you recognize when there's more going on? than maybe you should be dealing with?

Erika Forsyth, MFT, LMFT 3:13
So how do you become kind of aware that maybe you are carrying you're carrying more than you need to be? And I think I would even I would take a step back and think about well why is there something preventing you from sharing your burdens or your hardships? Whether it's something diabetes related or you know, other stressors in your life? Maybe that's how maybe that was modeled to you as a child. Maybe it's part of your family system. family culture is just you know, keep it, keep it going keep it in the house, don't talk about it with other people. Maybe you are the recipient of other people sharing their burdens, you become known as a safe person. And you don't feel comfortable reciprocating because that's what people do. They come to you and not as it not as a therapist, but just as a friend. So maybe that you know, pattern has been established.

Scott Benner 4:17
Maybe you are okay, sure. Sugar getting high.

Erika Forsyth, MFT, LMFT 4:21
Well, I am Did you call it picked it up? Yeah. It is. I am I am stable, but a little I'm writing a little bit high. But I think I'm good. Hopefully, we'll see if I go oh, that would be exciting.

Scott Benner 4:37
Well, I've done that once. It was it was not good. For me. It was very stressful. I don't wanna get off the track, but this older woman in her 50s So and she was recording from a hotel room, and she got low. And it was it was anxiety inducing for me.

Erika Forsyth, MFT, LMFT 4:57
I think I actually listened to that one. Yeah, it's just did she start eating sugar packets? I think are some one yams. Please

Scott Benner 5:03
don't do that to me. I've done that once in my life. I'm good. No.

Erika Forsyth, MFT, LMFT 5:10
No, it's okay. So okay, so why I think yeah, asking, Why would be the first question maybe two. And you might have you might not know to ask, Why am I not sharing my burdens, but maybe some symptoms to look for behaviors are if you're kind of checking out when other people are sharing? There's Okay. So you're kind of like a Ha, ha, ha. And then later, you're kind of what did i What did they say, because maybe you're so you're drowning in your own grief and your own stress. Maybe after a conversation with a family member or friend, you come home, and you experience feelings of resentment, or bitterness, like they're complaining about missing their flight home from Hawaii, I have to deal with this and this and this and SMS, but you aren't communicating that. But so you're feeling your thoughts and feelings are resentful, or bitter. Maybe you don't know how. And you are feeling trapped in your own mind and hearts. And every time you open your mouth to try and share, you either just cry, which is your body's it's your body's way of letting something out. Or you're really angry and irritable all the time. But, and you're you're maybe putting your anger on your partner or your kids, or your employer, co workers. So those would be I think, two markers to look for. If you aren't, don't have the awareness that you aren't sharing your hardships, maybe look for like that anger that irritability, the kind of constantly crying could be things to look for?

Scott Benner 6:52
Do we dump things on people? Who we know? Or hope, I guess in our heart won't tire of us? Do you ever notice like, I don't know what I mean? Like, like, like partners will be different to each other than they would be in the outside world. I always feel like that's when you see that. That's because you like in your heart you think well, this person is not going to abandon me over this. So I can, like, do this thing. Is that accurate?

Erika Forsyth, MFT, LMFT 7:20
Yes, I think in a, in a safe and trusted, you know, and in a relationship in which you can trust your partner and what you have established in your relationship that you can, you know, unload your your burdens your emotions, that's what you know why often white people choose to be in a partnership to have that reciprocal conversation and that you're aren't feeling alone, right in the world. And so, I think part of that is also having, if you were to think about can I share safely with my partner? Great. Do I feel like I have people outside of my home or relationship expert who I can share with? Having that kind of social awareness is also important, because you might want you know, I think about some people who would say, well, this, my friend is going through so much right now I just feel like I can't share, you know, my, my trauma, or my kids diagnosis story. Or, you know, I don't feel safe sharing this information with this person, because then they're gonna give me a whole bunch of ways to fix it.

Scott Benner 8:29
Yeah, it's interesting online, sometimes people will say, I'm, I'm gonna tell you something. I don't I don't need your judgment. I'm just trying to get it out. So those people are looking for, for like, it's almost one way sharing, but it's the only thing they seem to have, if that makes sense.

Erika Forsyth, MFT, LMFT 8:48
Yes. And maybe, in the initial stages of learning how to share our learning how to or it's a new, it's a new, you know, trauma. You just want to share, you don't want any problem solving or conflict resolution. You just want to and I applaud those people who can be clear and ask for what they need to say, Hey, I'm going to share something and I just, I'm looking for validation, or I'm looking for to not feel alone in this. And then they'll they'll get what they need. Back is, are those things

Scott Benner 9:23
one of the big surprises of the podcast for me? Is that it it somehow offers that to people even though it's not a two way conversation, like hearing. I'm maybe you understand this better than I do. I mean, what's honest, let's be honest, I hope you understand it better than I did. But when you hear two people, me and another person having a conversation about that person's life with diabetes, and you're and you're a fly on the wall for that, somehow that gives people a lot of comfort. And that part of I didn't first of all, I'd probably heard me say it. I didn't expect that to be the truth about the podcast and it still takes me by surprise a little bit, you know? But that's a real thing. Am I wrong?

Erika Forsyth, MFT, LMFT 10:07
It's a totally real thing. Because as a listener, you're, you can feel like, oh, that I'm not alone in that feeling or that experience. You you have that thought of, oh, that they experienced that too. I'm not crazy for thinking or feeling this way. And that minim minimizes that feeling of isolation, which is a key factor and leading to you know, depressive depression.

Scott Benner 10:34
So you're almost in a three person conversation, like you're sitting around the campfire, except you're not actively involved in it. But you are, in your mind going, that makes sense. Oh, I've had that feeling. And then that makes you a part of the conversation one way or the other? Whether it's virtually or if you're in person.

Erika Forsyth, MFT, LMFT 10:53
Yes, yes. No, I think that's a that's a great point. And so in going back to the, you know, do I feel safe sharing with, with my partner or with friends? I think, if you don't feel safe, listen to that. Also, um, you know, we don't want to say go and share your burdens with everybody. Understanding that, that sense of safety? Can that person give you what you need? Can you ask for what you need, are all really key points, I'm gonna

Scott Benner 11:23
bring something up that I witnessed online, I'm not gonna give anybody's details. And I'll be very vague about it. But it's so interesting how this all layers together, I saw a post in the private group, where a person was trying to share with everybody that they thought would understand that, how kind of defeated, they felt that in their personal life, they tried to organize a thing around diabetes. amongst their family and their extended family, I think they shared it with like, 30 people on Facebook. And besides their parents, no one responded to it. And they were really, like, devastated by this. And I'm reading the posts. And I think I think that myself, I mean, I don't know like Erica, I, I pride myself on trying my best to sit in the center and see 360 around things, I think, sort of my job on some level. Yes. And so I'm listening to what she's saying. And I'm like, I get it, like you reached out to 30 people and not one even privately, like, get off of like, but she never thought of what if they didn't see it? What if it made them uncomfortable? What if they were just busy? Like she didn't put any of the context of what might be happening on their side? Or maybe they just didn't want to? I don't know, like, I have no idea. But she came online to say to people can you believe this happened? And instead of, and some people were very supportive, overwhelmingly people were supportive. But it's always a couple of people who have to step in and say what I just went through my head out loud, as if it's the only consideration in the story, like, what you shouldn't have put them in that position. It's such a small part of the conversation, right? Like maybe, maybe she shouldn't have, like, I don't know, but there's no good that comes from saying that to a stranger, who's clearly here for you to just, she just wants you to say I have diabetes, too. I know how much that sucks. And by the way, everybody knows it sucks. But interesting how some people feel like they have to step in, and, and defend some other idea within the bigger idea. And it's felt like you were almost going through them earlier, like, you know, like, why would I not share something with someone else? While it might be because I feel like people are sharing too much with me. But you don't know. That's why you're doing that in that moment. And as those people are coming back at her with what could have been constructive conversation, if they would have communicated it better. It felt it felt a little attacking. And then, of course, as soon as that happened, then the original poster, then just lashes back. And I'm like, here we go. I've seen the story about a million times. And so I'm watching them do it. It's interesting to be able to sit, I feel like a little bit of my might give me a little insight into what your job is like, cuz you can point you can go well, that person is doing it for this reason. And that person is doing it for that reason. And this person is responding like this, because you can see that it makes them uncomfortable that she shared it outwards to people was fascinating how many different responses there were. And they almost all were just mirroring how they felt back to her. And she obviously didn't have any of those thoughts. She was just trying. She was just trying to get her family to recognize that it was hard to raise a kid with diabetes. It was really it, you know, and she

Erika Forsyth, MFT, LMFT 14:49
was coming to the group with to have to be validated.

Scott Benner 14:54
Yeah, she wanted to commiserate and listen, 98% of the people commiserated with her Oh, But the ones that didn't, you could have sectioned them all off into another room and said, Hey, you got to go see a therapist about why you answered this way. Because you're mad about something else,

Erika Forsyth, MFT, LMFT 15:11
or Yeah, or maybe not respond online, you know?

Scott Benner 15:16
Or take that into account into consideration that your thoughts are not so important that you need to like torture this person more, but they don't think they are. They think they're showing her some truth that she's missing, which by the way, might not be her truth, or the people who she was speaking to. It's just your, I mean, it's never lost me that I make a podcast and then I'm like, listen, sometimes people should keep their opinions to themselves while I'm gonna go. But, um, anyway, it's just how it seemed to me

Erika Forsyth, MFT, LMFT 15:47
and I Yes. Sorry, go. Go ahead. I was gonna respond. No, please do. Okay. So I think the that's part part of the risk me there's a risk benefit, right on sharing something like that online, where you're coming to a trusted, you know, forum, that maybe they received comfort in the past. And so that's the benefit. But the risk is, you really don't know how was going to land, you know, you are you are the sender of information. And as how are the receivers of that information going to respond, when you don't hear tone of voice really, in a post. So it is that's a risk that you're taking, sharing something really vulnerable in the group. But most of the time, you probably your needs are going to be met. But I also as the sender of information, you cannot control how it's going to land in the receivers lap.

Scott Benner 16:42
And it's odd to expect that you'll get 100% compliance from the from the responses, like why not be listened, it took me a long time to figure this out. And I had to get, I mean, the way I got to it was I got a very, very harsh review of my book. After I got five or six glowing reviews, like professional reviews, I, I was like on cloud nine, I was like everyone's gonna love this book. And then like the sixth review, basically, was it just it read to me, like, I hate this guy. I hate what comes out of his mouth. I hate the kids. He talked about the wife, his life, everything. Like it just they did not like me the way I told us nothing, right? And it knocked me back. It was the first time. And my publisher said if you're gonna put yourself out in the public, this is the game. Like, you can't like did you like the book? And I was like, yeah, and he goes, do you agree with what was said here? And I said, No, but it hits every one of my insecurities. Every one of my insecurities like what he said, especially about the writing, specifically, because I'm not Eric, I mean, I don't think it's any great. Like, I'm not a writer, you know, Damien, like I barely got through high school, I, if I'm good at one thing in writing, I come off the way I come off in person. So it's, it feels very, like comfortable, right? But it's not, it's not correct. I still, when I got that I wrote a book and I read the whole manuscript or something to look for where I didn't put the commas. I don't know what I'm doing. Okay. Anyway. But I learned to, I learned to say to myself, if this is the space I want to be in, then this is what's going to happen. And I have to be open to other people's ideas, and hear them as like possibilities of constructive criticism, but I can't take every one of them on as if they are gospel every time they come to you. That's crushing. And I do think that that inability to do that, maybe is what sent our online society in the direction it went more recently, in the last couple of years where no one's allowed to say anything that isn't perfect. Because what if you hurt someone's feelings? And I don't think that's valuable either. So, but you have to be ready for it. If you're gonna put yourself out there. If you're gonna say, I need somebody to validate me, you have to be ready to look at one thing and go I don't agree with that and just never think about it again.

Erika Forsyth, MFT, LMFT 19:09
Right, then that like for you, like what you shared? That might take a little bit of processing and that's okay, too.

Scott Benner 19:16
We it was a weeks Yeah. But it helped me because now I'm i I'm good with it now, you know?

Erika Forsyth, MFT, LMFT 19:27
Mm hmm. And I think for some people who aren't comfortable sharing what's going on with others, there might be fear preventing them to do that, right that they it might. It might actually even feel like if I verbalize out loud how hard this feels right now. I'm thinking of, obviously the caregivers with their Newt their child who's newly diagnosed. These are caregivers that I meet with and they feel like how do I if I share it out loud? Not me. makes it feel real. There might be it kind of made, there's might be fear that it's going to make it feel worse. If you share it out loud to somebody, or a pastor or a priest or a therapist or a friend, it doesn't really matter. But in any sense, if there's a fear of like, you're gonna be, like swallowed in grief, when in fact, actually by keeping it inside, that's where you drown.

Scott Benner 20:27
Yeah, but it, it collapses on you, like a black hole instead of the explosion that you're expecting. You know, which doesn't really come I mean, saying it out loud. I mean, there's a million different ways to say it. But there's a I talked about it in an episode recently, but there's a great book, I read about back pain. And that just says, like, Look, if you're not really hurt, if you have a pull, like, you know, if this is a tension thing, just saying, my back is okay, I'm not hurt that it actually helps, you know, like, you go like, okay, like you believe it almost and, and to say, this is really difficult. Do you think people expect that, like the world just gonna end if they say it out loud?

Erika Forsyth, MFT, LMFT 21:07
I think that's part of the fear for sure. And and I understand that if you are, again, all the reasons that we talked about not comfortable, haven't been exposed, don't know how. And the beautiful thing about sharing your, you know, your grief, your emotions, your hardships, is that there isn't really a right way. But as long as you are in a safe position to do it, I think for those people who are just testing that out.

Scott Benner 21:31
So you got to sort of acknowledge how you feel acknowledged what the reality is, and then make sort of intentional movements towards a resolution. Does that is that kind of how it works?

Erika Forsyth, MFT, LMFT 21:43
Yes, I think that might be after the sharing, right. So I think if you are able to say, I think a beautiful way to do it is to also articulate to the person who you're sharing with is that this is new to me, whatever all the things that you're fearing. This is new to me. I'm not really comfortable sharing this hard stuff that's going on in my life, so bear with me. I'm not sure I need anything back from you. Besides just Wow, it sounds like it's really hard. And oftentimes, we feel like it's weird to ask for what we need and that emotional exchange Yeah, but that's one of the most beautiful ways to get your needs met without like, I'm going to share this and hope that they just give me what I need. But then you kind of end the conversation feeling misunderstood, not validated and all those things

Scott Benner 22:32
I think two things you're making me think first thing is that men

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Men are much more open to this than you would think they are As long as it's privately a group of men, if one starts talking about something that's going wrong, you can see how almost excited most of them are that someone's saying something that they think. And it's not normally how they communicate. I've seen that for certain. But the other thing I wonder is, what if you just don't have someone? Like, what if there's just like, There's no one I see that happen. Sometimes I see people say, I can find it in my sister in law, but I knew she was going to blah, blah, blah. And you know, like this is because if, Listen, everyone is struggling, everyone, okay, on some different level. And the fear in this scenario was this person who wants to talk about diabetes, if I share this with my sister in law, she is going to lord it over me. She is going to treat me he's like, Oh, look, there's a person I'm doing better than take hold to so that she doesn't feel the pain of her struggle, right. And if you can't find somebody in your life, because your parents are tough, because your parents will start trying to fix it, especially if you're an adult, going back to your adult parents, and you're like, I'm really struggling with your mom is going to be like, Oh my god, I knew this was gonna happen. My baby needs me. Like, you know, now you're a 35 year old woman, somebody's baking your brownies?

Unknown Speaker 26:21
You're like, no, no, I don't need this. So like, where do you like, is therapy? The only way to find up? There's

Unknown Speaker 26:27
got to be another way. For a bartender like not that, um, but you know what I mean? Like, it's not what a bartender is?

Erika Forsyth, MFT, LMFT 26:34
Well, I think, yeah,

Unknown Speaker 26:39
they're just listening, because they want the tips, but who cares? Your thing, you know? So?

Erika Forsyth, MFT, LMFT 26:43
No, I think what the beauty the kind of the magic of therapy is, yes, you can, you can receive tools for stress management, you can use coat, you can utilize coping mechanisms, you can process trauma, but kind of the magic of it is you're telling your story. And someone is there to witness that. Someone is there witnessing, listening, validating your pain. And that's what we need as human beings is, you know, someone to witness bear witness to our life and our story and our pain. So obviously, that can happen. Hopefully, it should happen at therapy. If you feel like you can't afford it, don't want to try it, I would try. There are a lot there are a lot of free resources on line. There are a lower cost type of therapy, there is if you are a religious person seeking, you know pastoral care within your church that is usually free. Or seeking those types, your your pastors, your elders, those types of community members and asking for their referrals. Maybe seeking a friend who if you and if you if you don't have those, and there are people who don't have those close knit friendships. Maybe that would be when you want to go to therapy. But seeking support groups, you know, there are a lot of meetup groups, diabetes support groups, obviously, the online forum is a place. But if you're wanting that in person, touch point, there are lots lots of ways to do that, that are, you know, low cost,

Scott Benner 28:25
I'm going to make a couple of weird, like, so. Can I go to a grave side and speak to a past loved one like that, like, does that is that a healthy way to have that conversation when you don't have someone to have it with? Where's that order line? Am I about this? Am I about to describe like a time when you might want to go to the hospital and check.

Erika Forsyth, MFT, LMFT 28:48
I mean, I would say you know, on occasion, particularly if you're grieving that your loved one and you're wanting to just share and reflect I think, speaking out loud is powerful. Even if there isn't an actual human being there. People feel that connection. That's why we do have gravesites. That's why people go. I would say if you were doing that every day, that might be an indicator.

Scott Benner 29:11
Like once or twice. People say, I've heard a number of people say they talk to themselves in their car. Almost like therapy when I was a child really young. I remember being it struck me one day, like what would I do if my parents died? And I couldn't figure out what I would do. And so I I kind of roleplayed it in my head. Like I it was a one time thing but I can picture it as clear as day. I gave them some sort of a you know, I don't know it was a car accident or something like that. I then thought, okay, they're gone. How would I feel that I worked through how I would feel that I wondered where I would go and then I did that and then I never did it again. And I never worried about them dying again after that was very injured. thing. I don't know if that's wrong. Also, the last thing that I made a note by I know, I'm not saying you should do this, but I have heard more than a number of prostitutes in like documentaries and interviews say that you'd be surprised how many people pay them and then don't ask for sex. And then they just want to talk or hang out or stuff like that. Anyway, that's what came to mind when you were talking about that. But I mean, probably a pastor would probably be a quicker, easier way and cheaper. I mean, unless they hit you up for 20%. And I don't know.

Erika Forsyth, MFT, LMFT 30:35
Well, no, I think well, your second example of, you know, role playing. I think that yeah, that's also a reflection of your ability to kind of go through that that cognitive behavioral structure like you, you thought about how you would feel you thought about what you would do. And then once you go through the cycle, it changed how you felt. And so you that stress and fear was kind of relieved. So you were able, that is very unique and special, that you were able to kind of walk yourself through that.

Scott Benner 31:04
I remember, I remember the time I was with my brother in law. And it was like a family thing. I don't know what we were talking about. And I said something about, you know, if the house catches on fire, I know which window I'm going to jump out of. And he goes, what, and I said, you don't know what you're gonna do in a dire situation, if there's a fire and he goes, No, I said, what about this situation? And I started really, like rattling off like big ideas. And I was like, What if you lost your job? What are you going to do? What if this happens? What if that happens? He was I don't know. And I was like, Dude, I thought through all of that, like, you're not pre planning for things that are probably going to happen. I mean, the house fire ones, not a probably, but like the other stuff was right. Right. You know, and I felt, I felt crazy in the moment, because he looked at me like, What are you talking about? I was like, I don't know, man, like I've role played through all this. I know. I'm not leaving it up to chance, if something like this goes on, I said, you don't know what you would do if your car went into a lake? He's like, what? And I'm like, I do.

Erika Forsyth, MFT, LMFT 32:10
Well, and that that could be at your a planner, that could be a little bit of, you know, anxiety driven motivation to figure out what to do. When if when I don't know

Scott Benner 32:21
if it's anxiety, Erica, I have a plan of what I'm going to do if I find a genie in a bottle. Okay, well, that's because I'm 100% sure I'll miss it. Listen, I've said this on the podcast before I knew if I didn't have a plan, I'd end up with a billion dollars and a giant penis. And so I

Unknown Speaker 32:40
was like, I need a plan if this happens. So it's obvious right? First first. First one is, I don't die before I finished making my wishes. Because I know I'll drop dead before I get them all out. Right. So Oh, my God. Then the second one, of course is unlimited wishes. Or the second one is no matter what my third wish comes true. And then the third wishes unlimited wishes then I started taking care of people's health and welfare after that. Like is that not obvious?

Erika Forsyth, MFT, LMFT 33:10
I know I love that guy. That is your that is your mindset. You were for sure a planner and you and you take care of people. That's also Yeah.

Scott Benner 33:18
Well, that's great. Yeah. Do you not like when is that not what everybody thinks when they think if I win the lottery, I'll help other like, I'll set other buddy up. That's the only thing I think of I don't even know what I would do with all that money.

Erika Forsyth, MFT, LMFT 33:30
Well, that's I don't know if everyone I have not asked that question to enough people to know but I imagine that's might not be on the top five. Maybe they have your your Outlook

Scott Benner 33:41
to put everybody's make sure everybody's okay. And health always comes first in my head. Like I always think like, I'll get them a private doctor. So they can go through all their concerns. Like that is one of the first things I think. But seriously, I'm not joking. I'm not trying to be funny. I know if I didn't have this thought through. I'd have three of the stupidest things in the world if I found a genie

Erika Forsyth, MFT, LMFT 34:00
bottle. I love it. I love it. So

Scott Benner 34:03
go ahead I'm sorry. So I

Erika Forsyth, MFT, LMFT 34:04
wanted to I wanted to go back to your the third point of you know, paying, you know, paying a prostitute. I think that goes you know, there are human human nature as you don't. There are there yes, there are. There are introverts or extroverts. But I think at our core, we don't want to be alone all the time. Yeah. And so that reflects to me just that deep human need to be seen, heard, validated, loved, hopefully, you know, and not feel that that emptiness

Scott Benner 34:40
so those burdens drive you farther and farther away from those connections. If you don't strive to keep them is that right?

Erika Forsyth, MFT, LMFT 34:49
Yes, I mean, I think it ultimately can I would, I would look at you know, if you if you feel like no one needs to hear these burdens. I'm not worthy or mine aren't big enough. for bad enough, that's a really common, you know, lie that maybe you tell yourself with like, well, it's not I don't have it that bad. But then I would look at how, how are how is that mindset impacting your relationships with friends family, like we just talked about? Is it? Are people are you feeling isolated from them? Are you not having those connections conversations, if you're just holding everything inside? Yeah, because of all the reasons the fear the not knowing how mine is mine aren't, my problems aren't bad enough or big enough. It can impact your connections,

Scott Benner 35:37
there's a sentence that gets spoken a lot. That I think it's meant to be insulting a little bit, but I see it in both directions. So it's the worst thing that's ever happened to you is the worst thing that's ever happened to you. And so on. The kind of bad side of that is, the idea is that if you have lived a pretty good life, the tiniest thing you can be out complaining about. And most people might look back you and be like, Oh my god, like, that's the worst thing that's ever happened to you. But still, the rest of that point is, that's still the worst thing that's ever happened to you. And it strikes you just as bad as the worst thing that's ever happened to me, even if my thing includes fire and brimstone and a car hanging off a cliff and yours is that, you know, you couldn't pay your rent on time. Like, you know what I mean? Like, and so there's no way to like, I think that when you're talking about burdens and offloading them, so you can be healthy and be happy and live. judging your burdens is not valuable. Like it doesn't matter what they are. They're, they're the worst. They're the worst thing that's happening to you right now. And that can be overwhelming.

Erika Forsyth, MFT, LMFT 36:42
Yes, judging your burdens. And judging somebody else's, you know, I think we do. As humans, we kind of categorize burdens or problems or hardships. And yes, there are some that are really extreme. But as you said, it doesn't really matter. Because if it's you lived this carefree easy life, and then something hard happens, you have never experienced something hard. So of course, it's going to be traumatizing and painful. And so, but that person might not share it because you have that mindset of like, oh, but at least I'm not, you know, on the streets, or living with the chronic illness or your whatever, that you're comparing it too. But that doesn't really matter, because it is painful and challenging.

Scott Benner 37:27
How, why then, if, if that is the wrong way to deal with that? It isn't. It's hard to argue with though that when you see somebody who is clearly worse off than you, it does make you feel better. I mean, that's just true, right? Like you.

Erika Forsyth, MFT, LMFT 37:45
I think it is true. And we can internalize that and say we know I'm so grateful for what I have. You can you can live in that space of gratitude of contentment. But that doesn't mean that takes away from the pain or struggles that you have. Right? You can't it's not like you can't it's not like one or the other. But you can hold both.

Scott Benner 38:08
You can't let that gratitude trick you into staying in that room. When you shouldn't be there like yeah, yes. Yes, that person has literally no legs, but it doesn't make the thing you're struggling with. Reasonable to stay struggling with it. You still should try to get away from it.

Erika Forsyth, MFT, LMFT 38:29
Yes and find seek help support all the things? Yeah, I think that's we we often live in this either or mindset. Yeah. And okay, well, I just gotta be grad. I just gotta be grateful. I gotta be grateful. I got to be content. But don't. But yeah, but also allow yourself the space to feel like Gosh, this is really I'm really struggling. I feel really sad, angry, frustrated about this other thing too.

Scott Benner 38:56
How do you Excuse me? Sorry, how do you let's put ourselves in a we're in a relationship. And I have diabetes, and my spouse doesn't or my kid does. And neither of us do or something. I want to go to the other person, the other person in my life and say this is how I feel. But they might not be ready to say how they feel out loud. Is there a primer? Is there a way I can get them to that space so that it doesn't get met with either they shut off? Or they push back? Because they don't want to say it out loud? I mean that that seems like an important consideration here.

Erika Forsyth, MFT, LMFT 39:34
Absolutely. So you're in your in your relationship and your partner and maybe you're struggling with something and you want to have that reciprocal exchange with your partner. And so you come and share your your stuff. And I think if you're finding again over like patterns, I think you want to maybe first set up is it an appropriate time to have this conversation? Have You plan to say, hey, can we talk, I'm really struggling with this, can we talk on Wednesday night after the kids go down. Because oftentimes, if this isn't something that you do on a daily basis with your partner, they might not be prepared to receive that. So having a set time, being clear with what your goals are, if you're finding over many, many times that your partner is either cut off or defensive or unable to receive what you're sharing, or wants to kind of one up you then I would maybe encourage them to go, you know, it to see their seek communication, couples therapy, because then that that's going to interfere with the intimacy, ultimately, between you and your partner. Yeah,

Scott Benner 40:44
in general, therapy really at its core is, is a is a third party who just doesn't care about the details, right? And can listen, and then kind of get you moving in the right direction. People. You don't give people answers. That's not your job. Right. Your job is to show them what's happening and let them absorb it. And, and I guess, eventually become okay with it. Is that right?

Erika Forsyth, MFT, LMFT 41:12
Yes, I think too. We I would want to hear you know, what, what is your goal in therapy, because oftentimes people are really clear with what they need or want is processing their trauma, is it I want to learn how to meet people, I want to fix this problem in my relationship. So once we're clear on where are we trying to go, then it's about reflecting what do I see understanding the patterns poking around, sometimes if I feel like there are some hidden traumas or things that might be interfering with your current relationships and how you're communicating and getting move helping the client move along to, to get to their goal, but not by saying, I think you should do this, I think you should do that. You're really bad with this, you know, this area that's not

Scott Benner 42:01
being afraid to go to therapy is odd. Because really, if you are, then you're, you're just afraid to be to hear your own thoughts eventually, because that's really all that's going to come I think people have a mis understanding that you're going to get in there, and you're going to explain to them what happened. And you know, it just doesn't seem to me that that's the way it works. And I wanted to make sure people understood that. Right?

Erika Forsyth, MFT, LMFT 42:23
Yeah, I think there might be a fear of, you know, what does? What does there be mean? Is it is it sometimes being honest with yourself, and that can be really scary, and really hard.

Scott Benner 42:33
I also think it's probably this is just me, from my anecdotal, you know, experiences, but what you think is wrong, whatever wrong means, quote, unquote, you're often not right about that. Like, very, very infrequently Do you understand at your core what's happening, and just can't get away from it. And I go back to that example of, you know, the person sharing the story and how people came from all different directions. No one saw themselves as an aggressor in it. Like, if you if I, if I stop, and I say, hey, you know, you're being a little harsh. They're like, No, I'm not. This is just This is obviously what's going on. I'm like, Well, this is your this is your reaction to what you just saw. It's not obviously what's going on, you don't know any of these people.

Erika Forsyth, MFT, LMFT 43:18
Right are, are where they're sitting, what share what room, what not, how was their day, you know, all of those things

Scott Benner 43:26
at all. And, but here's a little bonus, because eventually we'll talk about interactions online. But as the moderator of a very big Facebook page, I also think that there's sometimes certain times of night where people are a little drunk, drunk and online. And

Erika Forsyth, MFT, LMFT 43:42
oh, yes. And maybe they're a little just more apt or free to share. Yeah, there's, there's the filters or not,

Scott Benner 43:52
there's no filter at all. They're either sharing openly or they're picking. It's very, very much of interest. Okay, so I'm sorry. So I figured out why I'm carrying the burden. I figure out that how to get it off of me. And I go through all this process, I figure out who I can talk to. What's the what's my expectation for when I feel better? Like is it is it right away? Is it once I give it I hate to say this because I feel I feel very granola you saying this, but when you give something a voice, oftentimes it dissipates. And the I've just found that to be true. But I feel like I'm a Yoga Instructor in Southern California when I say that. Erica tells me she used to do yoga instruction.

Erika Forsyth, MFT, LMFT 44:40
Back when I was a yoga instructor,

Scott Benner 44:44
but But you don't I mean, like I do. I do. Honestly, I found that to be true. Just saying something out loud is very valuable. But anyway, what's the like? What's the process? And is it possible that I'm so far into it? I can't do it on my own. We're, and then I need to find somebody else.

Erika Forsyth, MFT, LMFT 45:04
Okay, so what's sort of the goal? When do you start to feel good. And if you're in so far, deep, I think a good starting place is to journal. If you are, you know, I'd like the talking out loud in your in the car. Because again, it's like the voices in our mind can be the volume can be turned on so high that you can't function. And so by letting it out, I mean, it's, you know, classic, go journal, go get it out of your mind and onto the page that does help you are unloading it onto the paper or out into the world. By having someone else there present, not only hopefully, will you receive that validation that decrease feelings of isolation. But then if you're needing to, if you're needing help with some of those burdens, hopefully you can get to a place of, you know, stress management, problem solving, having some tools to utilize when you're starting to feel triggered, or overwhelmed or stressed or sad. Helping you find other resources to support yourself, be it independently with community. And maybe if it is past or current, you know, active trauma, helping you find ways to navigate through that. Changing your thinking or processing, the pain that you're feeling. Sometimes it's dealing with the psychosomatic symptoms, it really just depends on you know, what, what is the presenting issue, but ultimately, yes, you want to be able to function, but that the burdens are will continue, but then you'll have the skill set to manage it.

Scott Benner 46:44
Can I offload these burdens in nonverbal ways? Exercise, boxing, running, like, like that kind of stuff? Can I go to an axe throwing place and let it out that way? I mean, is there value to that?

Erika Forsyth, MFT, LMFT 46:59
I guess I'm so glad you brought that up. Thank you. Yes, I think exercise is a great way to for stress management. If I think the caveat to that is if you're finding that you're that's the only thing you're using, and you're still seeing these other issues arise like that irritability, that sadness, that maybe it's not quite enough, but it's helping you just let

Scott Benner 47:20
a little steam off every time you do it instead of just expressing it all.

Erika Forsyth, MFT, LMFT 47:24
Exactly, exactly. But I think that's a good first step. If you're kind of if you're in the space of I can't afford it. I don't have time. I don't want to trying these, you know, the journaling, the talking out loud, the exercise are all really great first steps for sure.

Scott Benner 47:40
Yeah. I just to hear people talk about that, when they're in a good exercise routine, that their mental health feels better. And you never I mean, because some things are just, I mean, life's never going to be easy. Like it's never going to be without resistance, right? Like so there's always even if you're not struggling with big things, you're still struggling with small things that you that you don't recognize in the moment, likely.

Erika Forsyth, MFT, LMFT 48:05
Yes, yes. And the exercise obviously has so many great, you know, current, and then post side effects with all the endorphins and all that

Scott Benner 48:15
release. So just some sort of a release. My last question, before I before I say something that I hope it's funny that I let you go is we talk we talk, you know, a lot from the perspective of a parent child who has type one and all that stuff that comes on. But this stuff is all just as relevant for an adult who's diagnosed. You know, I mean, and but that, but But it's different. Because your burden as a caregiver, and your burden as the person are just, I mean, I've just spoken to so many people, like it's just, it's a completely different reaction. People are, generally speaking, better at taking care of other people than they are taking care of themselves. And so I don't know. I guess though, if you're the parent, and there's a burden on you, then this really is about taking care of yourself. So both people fall into that conundrum of either I'm not going to take care of myself, or I'm going to put my effort into taking care of my kid. And so everybody ends up ignoring themselves, I guess. I don't know.

Erika Forsyth, MFT, LMFT 49:33
Yes, no, sorry. No, that I think that I think so. Yeah. Being diagnosed as an adult being a caregiver and your child is diagnosed. I think the adult there's a lot of layers to being diagnosed as adults. The I think the caregiver piece. I have found that people do throw their entire mind life thoughts, you know, they look like if Sleep, that they are just trying to protect their child. And I understand that wanting to give your child a healthy life. But I think having that awareness of is it, overtaking your life to the point that you will have no friendships, your your your relationship is suffering, your you cannot function, you're crying, you're irritable, then maybe that burden has become so overwhelming that you have forgotten about yourself. And that happens as caregivers, because you are so loving and obviously empathic and compassionate towards your child. And so having that wherewithal to say, You know what I need to I need to pause and find ways to take care of myself, it's really important that I know we've talked a bit about that before. Yeah,

Scott Benner 50:50
I think that you can make the mistake of seeing your child's health or your own health as the win. And then you can ignore all the other things that God, you know, that got pushed to the side, to get to that win. And you, I think, I think in general, as time passes, we're all slowly dying, right? But and we also all slowly give something away to take the next step everyone so on, sometimes you have to, like sometimes you say, I'm not going to be around as much because I'm going to succeed at this job, or I don't care about the job. So we're going to make less money, but I'm going to be around more everybody gives something away to get to where they want to go. But I think just from my personal experience, if you think you're going to have diabetes, or raise somebody with diabetes, and just a Grade A one C and low variability is your mark, you know, your, your, your Mendoza line for you're doing a great job. And you think that just because you're doing a great job of that, that the other things aren't suffering, you're probably not right about that. Like there are probably other things suffering.

Erika Forsyth, MFT, LMFT 51:53
Yes, and you and you probably know that. But I also want to just speak, you know, a moment of encouragement that it's never too late to, to change that. Of course, it's just because you're all in you can you can make steps no matter you know, what age and stage you're in, to take to take care of yourself and find those small or big ways to do so.

Scott Benner 52:13
Yeah, I know. I'll share to that if every anybody thinks that just because my daughter is a once has been so stable for so long, that I don't have these problems. I worry all the time. That I don't know if we haven't, and she seems okay. But I worry about the things that I forgot to address. And, you know, and I'm always wondering if it's going to like, come for her when she's in her late 20s or, you know, after college or like, is there going to be a point where she goes this synth off, it's too much. Like I'm trying to, I'm trying to walk that line. And I know you're a little low on time, but like I tried last night last night, she did a CGM change. And then I thought the CGM wasn't quite a while I wasn't sure how accurate it was in the first couple hours, and she starts eating and bolusing off of it. And then gets a little higher. And I said, I need you to test here. Like I don't want we shouldn't be given insulin at this number is not right, like let's test. And I know she was doing homework because I spoke to her earlier in the day. And she ignored me. And I I I did the thing in my head where I was like, Okay, this is gonna end up being a teaching moment, she is gonna get low later. And sure enough, it took till five o'clock in the morning. But she started have a low blood sugar. And I knew was coming. So I was awake or not awake. But I was listening for my alarm in my sleep, which is a thing, probably only people with diabetes understand. But I, I popped up, got her on, got it straight, kept moving. And at another time in the future, when she's not doing her homework, I'm gonna bring this up. And I'm gonna say, Look, if you just want to test your blood sugar for 30 seconds, we would have avoided all this. And I'm going to try to use it as a teaching moment. And I also tried to use it as a time where I didn't. I didn't let I didn't let diabetes turn into the reason why she couldn't do her homework. And because she was sitting down and I don't know, like there's a balance in there somewhere. But you have to you have to stay conscious of it and keep and keep going back and forth with it. You can't just slide one way or the other. But anyway, let me say this. I appreciate you doing this very much with me. I think you and I are finding a really nice rhythm.

Erika Forsyth, MFT, LMFT 54:31
And I hope Yeah, me too.

Scott Benner 54:33
It's lovely. I appreciate you being here. And I hope everyone heard earlier when I talked about letting stress off as steam. And then I said express it so that I could have a double entendre because you could express yourself and express this theme. I was so proud of myself. Oh,

Erika Forsyth, MFT, LMFT 54:50
I'm so sorry. I missed that and did not give you due credit.

Scott Benner 54:55
No, no, no, I was I got it done. Good. I don't though and I was just when it was over, I was like, Ah, I felt so good about it. Listen, I don't I'm not good at a lot of stuff, being able to hold a conversation. And at the same time, think about the words you're going to use to like make a pawn. I was pretty proud. I

Erika Forsyth, MFT, LMFT 55:19
know that it's good. You felt you shelved it, you held it. You used it. And that was so many skills. No,

Scott Benner 55:25
please. That's ridiculous. If it wasn't for iPhones and cheap microphones, the skill would be completely useless. So thank you so much. I'll talk to you again soon. 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 g VOKEGLUC. Ag o n.com. Forward slash juice box. I'm also going to thank athletic greens for their sponsorship and remind you to get some ag one at athletic greens.com forward slash juice box don't forget free vitamin D five free travel packs with your first order athletic greens.com forward slash juice box

thank you so much for listening. I hope you are enjoying yourself while you're listening to the show. If you are, share it with somebody else, tell them how to download it or where to get it on Apple Music or Spotify or wherever you're listening. I really appreciate that. That's how the show goes through word of mouth. And of course if you're looking for community, find that private Juicebox Podcast page on Facebook Juicebox Podcast type one diabetes, you'll know you have the right place if it asks you just a couple of questions because we need to make sure you're a real person and not a bot or something you know Juicebox Podcast type one diabetes. Lastly, there's a ton of episodes with Erica if you're looking for them. Once you get into that Facebook group in the feature tab there's a list or that list is also available at the top of juicebox podcast.com In the menu system. Erica is terrific. And I've been talking to her for a while so there's a nice little catalog of episodes with her

#839 My Real Self

Gail has type 1 diabetes and a number of other issues. She is also a returning guest.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 839 of the Juicebox Podcast

Hey, today I'm speaking with Gail, she has type one diabetes and a number of other issues that she's going to explain to you right up front so I won't take time telling you about them here. While you're listening to Gail and I make chitchat, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please Always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you are a person with type one diabetes, or the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box fill out the survey. That's it. I just finished the survey and you've helped people with diabetes. You've helped research for type one diabetes, you are going to be part of the solution at t one D exchange.org. Forward slash juice box. It is not often that by answering simple questions about diabetes, you can help but here we are. And this is it. Gail is actually a returning guest see if you can figure out who she is. Before we tell you later in the episode

this episode of The Juicebox Podcast is sponsored by Dexcom go take a look at the Dexcom G six right now@dexcom.com forward slash juicebox. And if you're interested in that Dexcom G seven, it's going to be coming out anytime now. And we're planning on switching my daughter to it as soon as possible. dexcom.com forward slash juice box has all the information you need. The podcast is also sponsored today by Omni pod. Now you know Omni pod makes the Omni pod five and the Omni pod dash figure out which one you want at Omni pod.com forward slash juice box.

Gail 2:15
My name is Gail. I am type one diabetic and I have been for 35 years. I also have MS celiac disease, undifferentiated connective tissue disease. And that's about it. There's a couple others but yeah, that's it.

Scott Benner 2:32
Hold on. How can you say how can you say there's a couple others but whatever.

Gail 2:37
You know, minimal right odds and that kind of thing.

Scott Benner 2:42
Don't give short shrift to Raynaud's. Okay, and that sort of thing. Keep going. What's that sort of thing?

Gail 2:51
I think I think that's all of the diagnosed autoimmune diseases.

Scott Benner 2:57
Not that you're here. But you have stuff. It's not autoimmune. No, I don't look at you.

Gail 3:04
Unhealthy otherwise,

Scott Benner 3:06
you're the champ. Alright, so sorry. Well, let's pick through this. This is a this is a an hour's worth of talking for certain. 35 years with type one you were diagnosed when you were 30. When you were a year old?

Gail 3:20
No, when I was eight. Okay, I'm 43

Scott Benner 3:24
it took the math from Miguel. But that's not a big deal. No, don't be sorry. So if you're 43 Now 38 When you were diagnosed? 35 years ago is a long time. My rough math tells me that was like the 90s

Gail 3:38
ish 8686 That's

Scott Benner 3:41
the nice and

Gail 3:44
not Not really.

Scott Benner 3:48
I liked that you're going to be difficult. Difficult. I just mean, not let me just say whatever I want to say. Okay, so let's talk about the well actually, let me ask was type one, your first diagnosis. It was okay. About the time my friend was diagnosed, so he didn't have a good goal of it. How was your go?

Gail 4:13
Ah, I, from what I remember. It was just I took NPH and our twice a day and ate at certain times. And that was about it. I mean, we did blood sugar checks and stuff, but it wasn't. I don't know.

Scott Benner 4:31
She just completely disappeared. Like got cut off. Finally, a nice repair or rhythm going to feel it was common. We're like, Oh, she's talking. We're gonna get a little storytime here. Storytime and then gal is gone. Probably not dead. Right. Probably like I don't think something fell on her house or anything. Now will she call back? There she is. A second.

Nothing bad happened right? Like a tree didn't fall through your house or something like that.

Gail 5:11
Sorry about that. No.

Scott Benner 5:13
Okay, just push a button.

Gail 5:15
I think I must have Yeah, were you futzing? I was

Scott Benner 5:23
no big deal. You're taking your shots eaten on schedule this kind of it you were starting to say

Gail 5:30
that was pretty much it. Yeah. So it was I remember taking the shot in the morning. You know, you mix the end in the our. Yeah, mph in the art and then it would take it at like six o'clock at night. I just remember my dad had to be home from work by six to eat dinner.

Scott Benner 5:44
Oh, this put a put rules on your father. It did. Yeah. Because we were eating at a certain time. I gotcha. What was maintenance? Like, we go to a doctor with frequency. were you shooting for goals or levels? Or was it just girl still? Keep going?

Gail 6:06
I just think to stay alive. I don't really remember a whole lot. Right? Other than what I did, I must have had that many lows, because I don't remember being all that often.

Scott Benner 6:16
When I should say when do you recall? Like, kind of moving your care to something more modern?

Gail 6:23
I'm probably when I was in college, maybe. Okay. Wait high school. Went to Lantus and homologue.

Scott Benner 6:37
still shooting it with a Yeah, yeah.

Gail 6:41
I didn't go on a pump until before I had my first son. So he's 14. So I probably went on a pump maybe 1516 years ago.

Scott Benner 6:50
Okay. And did you go on a pump, but back then you went on a pump specifically to get pregnant? Yep. Okay, because that was the that was the consideration back then. Right? tighter control, quote unquote. US upon right. Okay. Yeah. Did that work?

Gail 7:06
Um, yeah, I had tighter control. I don't know. If I remember once in college. I remember. I remember I was home for the summer. And I think I hadn't even to you when I was nine, something from what I remember. But then I know when I was on the pump, I got into the sevens.

Scott Benner 7:26
Definitely an improvement. And that was just just function of moving to a pump, and being able to cover like quick snacks and things like that address high probably

Gail 7:35
probably just paying, you know, closer attention to it that way too. Because it was going to have a child. So I wanted to do better.

Scott Benner 7:43
Yeah. Was Was Was MDI after regular and mph. Was that was that the biggest shift? Or was the pump bigger shift? I'm probably probably the pump. Okay.

Gail 8:00
All right. Because when I went from just two injections a day, I was more excited about being able to eat whenever I wanted with doing MDI.

Scott Benner 8:11
Okay, so it was it wasn't it wasn't as much about like, health considerations as it was about like day to day stuff. Gotcha. Yeah. Okay. And, I mean, if you were a nine on MDI, we don't even know what you were before that.

Gail 8:26
I'm guessing. No, I have no idea. I don't remember. I had I know I had to go get blood tests, but I just I don't remember what the results were.

Scott Benner 8:35
Now, the goals were different than for sure. So, yeah. Okay. So after type one, what comes next? Celiac? Can I guess? Let me guess. No, no. Okay. Well,

Gail 8:53
it was thought thigh roids. Oh, did I mentioned thyroid? Thyroid? Thyroid? Thyroid? Um, this is I'm sorry, I threw that one in there. I don't remember if that one was, I don't know. I should say I don't know if that one was actually auto muted. I had a multinodular goiter that I got removed. But my thyroid levels. My TSH were normal. At that point in time.

Scott Benner 9:21
Do you take a medication now? It takes them three. But you've never been checked for antibodies?

Gail 9:33
I don't know. No, I don't know. Antibodies for everything else. So I was like, Oh, I don't know.

Scott Benner 9:40
I have a bucket of antibodies scattered? Definitely. Probably. Yeah.

Gail 9:44
I have to think

Scott Benner 9:45
so. Has anyone ever said Hashimotos to you? No. Okay. Well, I mean, I guess if you're managing it well. It probably doesn't matter. You know what I mean?

Gail 9:58
There's not much I mean, I don't have thyroid so there's not.

Scott Benner 10:02
Oh, wait, they took your entire thyroid.

Gail 10:04
They did.

Scott Benner 10:06
Oh, wait a minute. Oh, I didn't recognize that I know about the goiter, I didn't realize that it meant the whole thyroid was gone. Okay, so how do you find that? Like, is that I guess you didn't have much experience with because you weren't having TSH problems. So you don't know.

Gail 10:25
Not that I remember anyway. But I know I, because I had been seeing the endocrinologist then because I wasn't really seeing my family care doctor. And then when I went to the pump was when I went to an endocrinologist. I think he was checking it like during an exam, and it was, he could feel it. Yeah, the bump and then I just kept growing.

Scott Benner 10:45
Gotcha. So they removed the whole thing. And it's been through managing it. Do you have side effects from not having a thyroid? Or is it managed pretty well with the centroid?

Gail 10:56
Pretty well at the centroid up until maybe six months ago.

Scott Benner 11:01
Start getting tired.

Gail 11:03
Yeah, my TSH got up to seven something.

Scott Benner 11:07
So did you leave? Was there like a big change for you weight gain something like that.

Gail 11:14
Now, well, I did gain some weight, but maybe 1015 pounds. But that one came out of nowhere. So that's kind of long story. So my endocrinologist who I was seeing quit his practice. And I had the bloodwork done because I had been fatigue. But that's another thing because I have fatigue because of all the other things. So I had had like annual bloodwork for anyway and it came back at seven and he had quit my endocrinologist quit so I was kind of stuck. And until I could get a another one an appointment with another which is until another four months or so. So I saw a an integrative health nurse practitioner and she did the bloodwork there and she put me on I believe it's called Saito mil. Yeah. Z T three T three. Yeah. And then everything is evened out since then.

Scott Benner 12:10
And that did that. Push your seat? Your TSH back under two.

Gail 12:14
It's just under two right now. Wow. So

Scott Benner 12:17
no, increase to the sense where just the addition of this Item No. Yeah. That's excellent. Okay, I like how when you started this, tell it you were like, this is a long story. And I thought to myself, well, it's a podcast cow. So perfect. Okay, so, second was thyroid, how do you remember how old

Gail 12:40
um, let's see, that was probably two or three years before my son was born. So 16 years ago, ish. 43. So whatever that was, whatever.

Scott Benner 12:54
20 Whatever. Let's go with that. Hold on. 47. I'm gonna take the foreign turn the three I'm gonna carry the one now it's seven to get the 13 and then 27. Sure. I like sounds alright. So okay, so here's the interesting part. And why I asked, you went 19 years without something new happening. You were just type one for 19 years. And for most of that time, you were just regular and mph kind of like boom, boom, hitting it here hitting it there decided to have a baby moved to the pump. Thyroid pops up thyroid after the birth or before

Gail 13:30
before

Scott Benner 13:33
and then then you got celiac.

Gail 13:39
What else do I have?

Scott Benner 13:40
So right now I had celiac MS and the connective tissue.

Gail 13:46
Ms came before celiac. I know what celiac I probably have a lot longer than I ever got diagnosed with it.

Scott Benner 13:53
But we were just talking about the diagnosis though. Like so. What do you like looking back? Uneasy stomach? Gas bloating? Yeah, like that. Yeah. So if, if you can, with hindsight, tell me celiac was after Typhon.

Gail 14:11
Yeah, okay. But I would say probably, I don't know probably even into when I was a kid. I wouldn't be surprised like MIT's

Scott Benner 14:19
we're gonna give celiac a one a with an asterix. I'm setting up your life like a horse race in front of me on a whiteboard just okay, then that's fine. For no one. Honestly. It's just to keep the conference. MS is an extra sign.

Gail 14:37
MS is next day that I got diagnosed with three months after my son was born my first son,

Scott Benner 14:44
okay, what's diagnosis of MS look like?

Gail 14:48
I had so I had like sharp pains and my fingers and like two of my fingers on each hand. And I didn't go see anybody Got it. I just, you know, I was pregnant and had a baby and everything like that. So then I finally made an appointment with my, I don't know why I went to my primary care doctor, but I chose to go to him because I thought maybe it was diabetes related. I don't even know what I thought it was, but I went to see him and he said, we'll do a an MRI to rule out Ms. And then it rolled it in with, I think three or four lesions on my brain

Scott Benner 15:25
go well off of sharp pain in two fingers. The doctor was like, that's gonna be Ms.

Gail 15:32
Apparently that's how we figured it out. I'm sure I told him something else too, but I don't know. There's fatigue. I mean, he had a newborn so I don't I don't know.

Scott Benner 15:42
I'm just saying like that's, you still have a doctor? That's well done. No, he retired. These people. Just leave left and right. Gotta go. See. Goodbye. I need more. I need more Synthroid. Okay, see? Right. So, um, so you get that diagnosis? I mean, can you put yourself back in that time? Is that crushing? What does that feel like?

Gail 16:09
That one was pretty bad? Because, yeah, because I, you know, I have a three month old and my grandma had just died. And I got the MS diagnosis. So that was a lot to handle at one point in time.

Scott Benner 16:22
Your grandmother, get hit by a train? Or did she have some illnesses? She was 89. She was old. So yeah, her time?

Gail 16:31
Yeah, it was that time was

Scott Benner 16:33
that's, that's nice. I kind of find that lovely. For some reason that, you know, like, she just she made it to the end, it feels like,

Gail 16:40
Yeah, I think she did quite a good life. So.

Scott Benner 16:43
So that is, how long is it just pain in your fingertips?

Gail 16:50
Um, that kind of went away? It's a good question, because I haven't had that for a long time. I don't know, at some point after the pregnancy, maybe six months later, it kind of just disappeared. But I had also got a medication for MS at that point in time. So I don't know. That's, I mean, going on the medication doesn't make your symptoms go away, though. So

Scott Benner 17:15
what is the medication? Probably slow things

Gail 17:19
supposed to stop the progression of the disease.

Scott Benner 17:23
And the disease is these lesions that appear? Right. Okay. Did the existing lesions ever go backwards? Or? No, no, no, is there they're there with it? Or what they are? How often do you look for more? Do you wait for symptoms? Are you on some sort of a

Gail 17:40
schedule? Every year I get an MRI.

Scott Benner 17:44
What it's been a while now does it has it progressed or has the medication work?

Gail 17:50
So I was on what was called beta serum, which was another injection. It was like an every other day injection. So as on that, oh, probably two, two and a half years. And then I went off of that to have my second son. So I was off of that for maybe a year and a half and then went back on. And then I had my first official, quote unquote, relapse when my oldest son was in probably kindergarten, when he was probably five or six. And I had like, I can't remember I had to because I've had two relapses. But I've gotten back probably 95% of what I lost during those relapses. So the first one, I think it was my left side on that one. So it was like my vision went walking and my eyes were not tracking together, if that makes sense at all. So to wear like an eyepatch, because I couldn't. I couldn't see at the same time I was getting double vision and that kind of thing. Anyway, so I don't remember what I was asked was beta share on that I was on for a while. Okay, that was the first one.

Scott Benner 19:00
I was asking about whether the medication stopped the progression all but it sounds like you had two instances so far.

Gail 19:07
Yeah. So I had so I had the first relapse and then stayed No, we switched to. So how I understand it is the MS medication can kind of run its course and your body just becomes accustomed to it. And you need to switch so I had switched to what was called a Boggio. And I had had another relapse within like six months after that one. So then my neurologist suggested I tried to Sabri, which was the infusion, which was a monthly infusion. And that one kind of resets your whole immune system in a way and since then, I have not had a relapse.

Scott Benner 19:43
Interesting. When you call it when it's a relapse, it's a it's a something different happens.

Gail 19:51
It's yeah, it's like basically there's another lesion that shows up and it affects whatever it's going to affect which can be pretty much anything

Scott Benner 20:00
depends and these lesions always happen on the brain.

Gail 20:04
So I don't have them on my spine, but they do happen on your spine as well. They can.

Scott Benner 20:09
How do you you know, I don't know if it was on the recording. I'm struggling to remember if I said this to you before we started or not. But I said, I didn't. I thought you weren't nervous because your voice is so settled. But now I'm starting to think you've just been through some shit. And in this is your level of like, normal. Yeah. Am I right about that?

Gail 20:35
Yeah. Okay. It's I don't know, it was like coming off like I don't like there's no emotion. Because you're

Scott Benner 20:41
coming into knowledge just No, no, not emotionless, like, listen, I wouldn't. I wouldn't expect somebody to come on and say, hey, I want to be on a podcast. I have MS. Celiac type one. We haven't even gotten to some of the other stuff this this this. And you're just going to come on and start crying. Like I imagine that people have it, like, in a place where they can talk about it. You don't sound emotionless to me, you sound to me.

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Gail 26:03
Probably not. Yeah,

Scott Benner 26:04
you look to me, like, you'd be like, Oh, we gotta move to the left and get underground. And, like, you know what I mean? Like, you just You seem like, you know, I keep saying this in the podcast recently. But I can't for the life of me. Somebody's got to write it and tell me who said it. Although somebody probably said it hasn't been up yet. But somebody told me about how astronauts think about how basically everything around them is trying to kill them. So they order it by what's gonna kill them. Next, they fix that problem. Then they go to the next thing, they go the next thing like you have that vibe to you. So, yeah, and you've had it like, like, I I heard it three minutes into the conversation. So and, um, and to make my point, you had another baby after you thought you had Ms. Like, I think that's like a baller move. Oh, you know what I mean? Like,

Gail 26:56
you know, it was my neurologist that because I did see a neurologist who I didn't care for and we switched from him and went to a different one that my family care doctor who came up with Yes, recommended and we went to her and she said she was all for it. And I think that just kind of made me feel like that it was okay.

Scott Benner 27:16
Do they talk about? Did they talk about multiple multiple sclerosis? Like it's an autoimmune disease?

Gail 27:23
I'm not I don't know. It's not really ever brought up? No. I mean, maybe occasionally with me because she knows of everything else I have. So I don't know. It's not

Scott Benner 27:37
I don't know. I mean, a disease in which the immune system eats away at the protective covering of nerves. Wow. Oh, by the way, girl, it's rare. I know. Everything you have is rare, by the way rare. Yeah. No, but you've probably never won the lottery. No, no, this doesn't translate to other good things like is ms autoimmune or inflammatory multiple sclerosis T cell mediated autoimmune disease in which inflammation and sustained by Okay, so when they give you this um, tell me again, what you call the the infusion. What's that medication

Gail 28:12
is called Tysabri.

Scott Benner 28:16
You said that, like, you know, I wouldn't be able to spell it. Oh,

Gail 28:20
Tys ABRs.

Scott Benner 28:25
Got it. So you said kind of like, when you told me like it kind of resets your immune system. I thought I wonder if it's working on any of her other stuff. So is Are there benefits besides Ms. Four that medication for you?

Gail 28:40
Not that I'm aware of? No,

Scott Benner 28:42
you haven't seen it impact? Raynaud's celiac, anything like that? No. Okay. All right. You were one of the people when somebody says hey, I can't get COVID I'm compromised. That's from the medication. Right? You are compromised.

Gail 28:59
Correct?

Scott Benner 29:01
How much? What did you do during COVID? And I guess probably what are you still doing?

Gail 29:08
During COVID we didn't we didn't go out too much. You know, I would wear a mask or whatever, all that stuff and I've been immunized. I've had both I've had both boosters now. I'm everybody My house has had their their shots and everything. No, but nobody in my house has gotten it. Knock on wood.

Scott Benner 29:28
We haven't either. I should I should knock on Sunday as well.

Gail 29:32
Right? Yeah. Well, that's a you know, there's been doctors too that have said because of all the autoimmune issues I this is all theory. So I don't know if it's really true, but that I don't get sick very often, like with colds or flus or anything like that. I don't may say that. It could be because your immune system is just working overdrive all the time. That you don't get sick like that, but

Scott Benner 29:58
I don't know. I remember thinking and the first couple of years of Arden's life like wow, this kid's never sick. You know eight other kids, they got like, my son got sick and ear infection, things happen to him. You don't even look at our nose like this kid's like, Superman. She never, I never thought I never thought the things like that might not be good. But there we are. Alright, so we're gonna, we'll circle back around a little bit, but just tell people how Raynaud's presents.

Gail 30:26
Right nods. So that's, I don't know when that one popped out. But it did at some point. It's, um, so like, it affects me more in the winter than it does in the summer. But my fingers in my hands will. It's like, it almost looks like like you're dead persons that are wasting it. But the blood all drains out of your limbs is what it looks like. Turn Blue turn like kind of a bluish white.

Scott Benner 30:53
Is it a pretty good, super, super good? Was it like something? Like is it nice? At least could you? No, no. So it's how long does it last for when? Like, is that a flare up situation? Or is it constant?

Gail 31:09
Just happens whenever. Gotcha. don't happen. Like in the wintertime, or in the summertime, it can happen if I'm indoors in the in the air conditioning and then go outside. Like my toes will do it.

Scott Benner 31:20
Do you prefer warm weather in general?

Gail 31:22
I do. Yes.

Scott Benner 31:24
Do you live somewhere warm? No. Always what I well, so interesting. Yeah. Why would you not pick up a move immediately?

Gail 31:33
I would like to at least

Scott Benner 31:36
see of these bastards that you're attached to hold up? Yeah, they don't want to move so your toes can stay? Pink? Right. Time I hope any autoimmune with your kids.

Gail 31:53
My youngest has. He has the marker for celiacs. Okay. He does not have it necessarily yet. But he has the

Scott Benner 32:04
marker. Interesting. So no symptoms.

Gail 32:08
He so that's he just had his a well, child checkup last month. So we're gonna get him tested. Pretty soon he was he talked about having stomach ache. So with the celiac from how I understand it is it's like if you have the marker, you need to get tested every couple of years just to see how you're doing. And he didn't want to get the blood test. So we said then you can go gluten free if you want. So he did. And then we went to his wellness checkup. And she said, Because I said something about his thyroid too. Because he's not. He's kind of short. And isn't like, I don't know what he could just be short. I don't know. But I you know, I worry about things like that. And things like that. Yeah, yeah. So So I said, Can we get that checked? And she said, Yeah, so we're gonna get it all checked. At the same time.

Scott Benner 33:00
Yeah. And, you know, if his T TSH comes back over to don't let them tell you it's in range, right? Yes. Okay. I do. Good. Good.

Gail 33:09
She's stressing, she's testing for the antibodies on that one. So

Scott Benner 33:14
yeah. Well, the next time you get the next time you get a blood test for fun. You want to get that antibodies test. I mean, that thing's gone now. Why don't we just let it live? Let it die, let you know. Okay, so now the connective tissue thing. What is that called?

Gail 33:34
undifferentiated connective tissue disease.

Scott Benner 33:37
When does that pop up?

Gail 33:41
That was probably started getting symptoms I want to say fall of 2018.

Scott Benner 33:49
Okay. And the description of this, you know online. undifferentiated connective tissue disease is a term suggested by Leroy 30 years ago to denote autoimmune disease that does not meet criteria for established illnesses such as systematic lupus sclera DOMA Derma toma say this I don't know surgeons, syndrome, vasculitis, rheumatoid arthritis like you shouldn't get some of that or all of it just a mixed bag.

Gail 34:25
So you have to have so i i favor lupus and Raynaud's. And that's all part of UC TV. So lupus, I've got I think three of the four things you have to have to have lupus.

Scott Benner 34:42
And one of those things.

Gail 34:45
I knew you were gonna say that I don't

Scott Benner 34:48
have a Lupus,

Gail 34:49
lupus and I'll tell you if I've got it wrong.

Scott Benner 34:51
Symptoms fatigue fever, joint pains, stiffness and joint pain, joint pain. Yes. So, fatigue, yes, butterfly shape rash on the face. No skin lesions that appear or worsen with sun exposure. No fingers and toes that turn white or blue when exposed to cold. That's right. So you you have you got at least two. And then if you count the cold Hold on, is there more? Hello internet? Chest pain. Shortness of breath. Not dry eyes.

Gail 35:32
Yes. Oh, that's shoguns.

Scott Benner 35:36
Headaches, confusion and memory loss.

Gail 35:40
Sure. How you qualify that? I don't know.

Scott Benner 35:47
What keeps you Gail from one diving off the tallest building, you can find how a solid how you're staying positive?

Gail 35:55
I don't know. I just said I did it. It is what it is. I don't I feel better than the last time I talked to you. So that helps. So

Scott Benner 36:04
okay. You feel better? Is there things are improving?

Gail 36:10
Yeah, like the Plaquenil, which I am on for the UCTV has taken the joint pain. I don't want to say completely away, but to a point that is definitely tolerable. And it's not there all the time.

Scott Benner 36:23
Well, that's good. How long have you been feeling better?

Gail 36:28
Now, I don't know, maybe 678 months?

Scott Benner 36:32
And you attribute that to the new medication? I do. Is there a concern that it will stop working?

Gail 36:42
No, I haven't really thought about that.

Scott Benner 36:45
So I'm like Santa Claus over that happiness doesn't kill Have you considered it might not work anymore. You're like, Shut up idiot. Oh, my gosh. What made you want to come on today?

Gail 37:05
This is the I don't know. Follow up from the last one. Because I said the last time that I thought I was more doom and gloom and I thought that that was what I was in the office.

Scott Benner 37:16
Alright, so now we've got a good background. Do you remember what episode you were on before? By any chance?

Gail 37:20
No, five, something. I don't remember what one though?

Scott Benner 37:24
Let me see if I can figure it out. God knows. So when you were on? Previously on whichever episode I'm about to figure out, you're on? Did you come away feeling like that? Just when you listen back? Were you like, Oh my god. That doesn't sound like who I feel like I am.

Gail 37:43
That was before I listened to it. But yeah, that's what I was like. I wonder if that's how I came across? Because it's not how Yeah,

Scott Benner 37:53
right. So this was let me did I call your episode? galeforce? Yeah, Gail has type one diabetes, a number of other autoimmune issues. You know, you know, it's bad when I just say, and a number of other autoimmune issues because of I started listing them out. I'm afraid people will look on their podcast, like, Oh, my God, like, what are we doing here? But, but so. All right. So we got done recording, and you just felt like, I've laid my life out. And I don't like the way it sounded. Is that about right?

Gail 38:25
That's in my head? Yeah. Yeah, that's what I was worried about. Okay.

Scott Benner 38:29
And, and did you make steps towards addressing that?

Gail 38:34
What do you mean? Oh,

Scott Benner 38:35
did you change something? Did you start meditating?

Gail 38:39
Oh, no, I think I just started feeling better. Because I don't think I felt that well, when I talk to you. And so it was fairly new.

Scott Benner 38:48
Right? And but you don't recognize it when it's happening. Is that right? Probably like day to day you don't think oh, I sound bummed out or? I don't like.

Gail 39:01
Yeah, I doubt it.

Scott Benner 39:02
Yeah. Do you think your family knows?

Gail 39:05
I'm sure? I'm sure they see a difference.

Scott Benner 39:09
Nobody mentioned it. Nobody had the balls, Gil to speak out.

Gail 39:14
I don't think they're afraid of me. But no, I mean, I don't know. I don't think so.

Scott Benner 39:24
You don't need anything? Yeah. Like nobody's just looking at you and be like, Hey, your husband hasn't said hey, you've been more pleasant or you look like you feel

Unknown Speaker 39:32
he has not? No.

Scott Benner 39:34
I would do it. i i I pride myself in honesty over my own happiness. What do you think of that?

Unknown Speaker 39:45
I don't know. Probably not

Scott Benner 39:47
a good idea. But sometimes no. Yeah, but there have been times where I've said to Kelly, I'm like, you know, hey, what you're doing right now. It's really working for you like you seem happier with or like you feel better or whatever. Yeah.

Gail 40:00
I mean, he's he said stuff like that. Yeah, probably so yeah.

Scott Benner 40:03
Okay. All right. So what do you feel better now that because oh nine because I gave you like, basically like I gave you an opportunity to kind of go through things again and re Explain yourself. Do you feel better about how you said at this time? Or do you think it's just so what it is that you can't dress it up?

Gail 40:22
Probably both. I don't there's I mean, there's nothing really to dress up. It's just, yeah, it is what it is. It's not. I mean, you can't really wow. Yes. And then I also feel better. So you feel better. That helps. That helps a lot.

Scott Benner 40:39
Have you been able to add, like, physical activity into things that like to help people? What, besides the medication? Is there anything else that kind of made things better?

Gail 40:50
Um, why I have jogged for the last, I don't know, 10 years or so. So that that kind of went, it didn't go completely away when I was feeling worse. But that's gone back up. I want to train for another half marathon one more time. That kind of thing. So I do that. And I've been swimming, which helps with the joints. Ages not helping with joints as well. So there's that with running. But

Scott Benner 41:21
where do you feel that you're? Where to? Where do you feel your knees, your ankles? Where does it

Gail 41:27
knees, knees more? So now anything

Scott Benner 41:31
that's helps it? No, no, it's just random. And that's

Gail 41:35
that that drink thing like the knee pain in the hip pain that that more to me is just because I'm getting older. And there's arthritis in there and that kind of thing. I have a

Scott Benner 41:47
hard time arguing with that. Because I just had what I was told, like, Oh, we're gonna clean your knee up. And I was like, okay, so you know, guys, like no big deal. Like the MRI goes, I'm just gonna meniscus this little torn. I'll trim it. And then I wake up. And there he is. And he goes, so um, you know, we'll talk tomorrow at your appointment. But there's more in there than I thought. And I was like, Oh, great. You know, and then he shows me these pictures. And, you know, arthritis. I don't know how to, like, quantify arthritis. I'd never thought about it before. But it was just this fuzzy Ness, the fraying of like, ligaments. And he, you know, he basically cut all the framing out. And he says, hey, the outside of your knee. Looks like you're 20 years old. I was like, right. And he goes the inside. I mean, I don't know, you'll definitely need a replacement and five years and I was like, wow, we were just use your bedside manner. Guy is so smart. He's just like, says what he thinks, which I guess I appreciate but he's like, but maybe 10 years, maybe never. And he does that. Like maybe never at the end. I'm like, was that the hopeful part that I'm supposed like, feels like you're telling me I'm getting my knee replaced one day, you know? Well, huh. But it sounds like Yeah, but it was really. I don't know. I'm 50 You know, like I it shouldn't have been like some like surprising thing. But when he said it, it was I was like what it is? Yeah, I was like, oh, that's gonna happen to me. Like, that happened. Other people. You don't I mean, I'm a podcast. Like I should be treated differently. Yeah. And you as an example, I don't know if we talked about this last time, but sometimes I stalk people while I'm talking to them. You're like this adorable little person.

Unknown Speaker 43:37
I'm an adorable little adorable little

Scott Benner 43:39
person. Like let me guess from your photos. What do you like? 5556? Uh huh. Right. just adorable. It's like a little nice way about you. That your face is pleasant. You don't mean like you You make me think that if we were in high school together, you would have been like the energetic friend that everybody liked. That's funny. Is it anywhere near accurate? No. Not at all. A horrible person Gail who

Gail 44:04
know just kind of nerdy.

Scott Benner 44:07
Okay, but within your little nerdy group, right? No, suppose I love how difficult you argue I it says something about me that I absolutely love talking to you. And you fight me every step of the way.

Probably true. This is my own fault. I'm now looking at my own relationship. And I'm going Oh, I see. This is my fault. I like oh my god. Do you hassle your husband like this or do you let him live?

Gail 44:46
He says I do. I don't I don't see it. But yeah,

Scott Benner 44:50
let's just say you're right. How, how aware are your kids about your situation.

Gail 45:03
They know I mean, they know everything.

Scott Benner 45:05
Yeah. Do you think you have lupus would somebody characterize you that way?

Gail 45:10
That, you know, when people because explaining the UCP the whole thing is, I don't know, it gets confusing. And it's just easier to just say Luba because I, I whether it actually ever progresses to that. I don't know. But, um, that's where it's leaning toward.

Scott Benner 45:31
Okay. All right. I usually don't ask a question like this, but I think it fits here. I mean, I need you to. Maybe you don't know. Right? But like, what's your plan? Like? Do you have like a plan? Do you get up in the morning with a goal in mind? Do you work?

Gail 45:55
Oh, I work. So before I had my first son, I worked as a paralegal. And then I went part time in private practice. I was in prosecution side and then I went to private practice, because I worked part time with after he was born. And then my second son was born and I stay at home. So I don't I do like work from home stuff like legal dictation stuff. Transcription. I should say that dictation. But, um, so I do that. And then it's not, you know, it's just like, some extra money. But then I'm also the CASA volunteer. I do that as far as the future goes, I don't know. I don't know. My youngest son, just he's finishing up fifth grade, and I have another one going into high school. So I'm not needed as much. You know, the older they get?

Scott Benner 46:48
I don't know, your health is basically like, it's not up to you. For the most part, like the type ones the only thing you probably have some like sway over right?

Gail 46:58
Yeah, pretty much.

Scott Benner 47:02
Did I ask you this last time, but of all these things, if you could give one of them away? Which one would you give away?

Gail 47:10
I don't remember if he did or not.

Scott Benner 47:12
I always find this question. Interesting. Because nobody answers it the way I expect them to usually. Like so if I said to you, we can get rid of one of these right now. Like I'm, I have my finger where I think you're going to answer but what would you say?

Gail 47:27
I would probably say connective tissue disease.

Scott Benner 47:30
See, I thought you're gonna say Ms.

Gail 47:34
That that one's been kind of at bay. So that's probably why I don't pick that one.

Scott Benner 47:37
Yeah, the connective tissue has the biggest impact on your day to day.

Gail 47:44
Yes, or it has most recently.

Scott Benner 47:46
In what ways recently? Well,

Gail 47:49
I mean, just because it's the most recent diagnosis, but like. So the way it came out how we figured it out was because I had frozen shoulder but in both shoulders at the same time, which is not common, I guess. But that one, I still I'm like on freezing right now. So it's, I have more range of motion, but it's still there. On both sides.

Scott Benner 48:13
How are they working?

Gail 48:16
I had physical therapy, and I did cortisone injections. I don't know. I don't think really either one did that much help. I think it's just been time. I could have I met with a an orthopedic person last winter, like our last fall. And we kind of gave it. I said, I think that is starting to unfreeze. So let's see where we are in December. Because they were an option that it could have done was manual manipulation under anesthesia. But then it's like I understand it. It's real intense physical therapy afterwards, like really bad. So I don't know, December came around and it was starting to feel better. So I just let's just let it unfreeze itself because i i In the orthopedic guy said to, he said with the connective tissue disease, I don't know that it's going to do it could help. It could not. It was a 5050 Flip because he didn't he didn't really have anybody with connective tissue disease that had frozen shoulder. So he wasn't sure how it would all work together.

Scott Benner 49:21
The connective tissue disease they besides the symptoms, the zero blood test or other testing they can do for it.

Gail 49:29
Yeah, that was the Oh, anti nuclear antibody, I think.

Scott Benner 49:36
Okay, and that comes back, like pause

Gail 49:38
that came back positive, but the most like I think the last three blood drives I've had it's come up negative since being on the Plaquenil. So it's, it's like I was saying remission but in remission, I guess

Scott Benner 49:54
because of the medication. You stop the medication you go back to

Gail 49:59
where you are Probably yeah,

Scott Benner 50:01
I don't know. And that's, that's the monthly that's not the plan. That's a pill, isn't it? Okay. And then the other one is the infusion monthly.

Gail 50:12
But I don't take the infusion anymore, right? Because it's not working. Because it stopped working Gotcha. Yell? Yes.

Scott Benner 50:24
How was your type one doing?

Gail 50:26
Um, so I, when the infusion quit working, I went on a medication called Boo maerdy for the MS. And that caused flushing incidents, which then made my blood sugar skyrocket, it would be like so I'd be I don't know that it happened two or three times a week is how often would happen. We tried all the other medications that helped try to make that not happen. But it kept happening. So it I would be, you know, say I was 95. And then all of a sudden it would go move, and I'd be up to 300 within 10 minutes. And, you know, then I'd spend the next however long getting it back down. So, that being said, my last day he went see was, I think five nine. So Well, I'm sure that this I get another one next week. And I'm sure that that was going to have gone up some but we'll see

Scott Benner 51:27
where those spikes. Were they at least consistent like when you saw them. Was there a way you could Bolus for them?

Gail 51:36
I was taking a prize a forum to bring them down. It's a good idea probably. So I did do Bolus is but it took forever to get it down.

Scott Benner 51:44
Are you looping? Yes, you loop and use a freezer for spikes and for meals.

Gail 51:50
I use I don't use it for as all the time just for spikes mostly. And then if I'm going to have a really high carb meal that I will How did you not usually

Scott Benner 52:01
the doctor was cool about giving it to you when you asked.

Gail 52:04
He didn't want to at first and they said I would like to try it and he said okay, so then he wrote a prescription for

Scott Benner 52:10
man of conviction

Gail 52:15
was the one that quit to

Scott Benner 52:19
doesn't have a stick to nature. Whether it be in personal conversations or professionally. I would like to try a president No, please. Okay.

Gail 52:33
So that's how that works.

Scott Benner 52:35
I find that you went a little look into my mind. Gail, I find that the most disturbing thing you said in the last 46 minutes.

Unknown Speaker 52:44
Because what why No, if yes. Is there like? It means he has no real opinion. Yeah, if he has no opinion, then he has no knowledge. Because he's not working off of anything. He just heard something. No. And you went Come on. And he was like, Yeah, all right.

Gail 53:04
Yeah. I don't think he'd ever prescribed it before. So I don't know.

Scott Benner 53:08
I don't care, then he shouldn't have said no, he should have said, you know, I've never really prescribed this before. Why don't we look into it? Not?

Gail 53:16
That would probably have been a better option. Yeah, no.

Scott Benner 53:18
I mean, come on. No, no, really? I mean, okay, if you want it. So, have you had any? So I mean,

Gail 53:26
he did I shouldn't say he said no. But he advised of all the things that were not necessarily good. And I said, I still want to try.

Scott Benner 53:34
So the side effects stuff that's on the sheet. On there, she Yeah, you know, I, you know, I put in a Frezza episode out today. Oh, really? Yeah, that's what do they call that? coincidental? Yes. Nothing magical, really. But so have you had any of those things? Like the coughing or?

Gail 53:56
No, no, I have not had any issues with it.

Scott Benner 53:59
Yeah. I mean, you must feel like, this is me putting myself into your situation. But you must feel like whatever. Like what could possibly go wrong. Right. Like, at this point? Yeah, who cares, right. Do you even wear a seatbelt?

Gail 54:12
I do. I do care what's gonna happen?

Scott Benner 54:18
Yes. Have you ever had that thought? Where you're like, I have to be out of bad things that have gonna happen to me. Like, I must have never thought that I guess nothing about your situation that says that something that he isn't about to happen?

Gail 54:33
I mean, no, I mean, no,

Scott Benner 54:38
I don't really think that you don't feel that way. They're

Gail 54:41
not really okay. Well, that's cool. Not most of that most of the time. Maybe when the first diagnosis comes around, but

Scott Benner 54:48
so if you were at a party and someone came up to you and said, Hey, you want to start heroin, you wouldn't be like, sure, whatever. You'd be like, No, I would like to stay alive longer, please. Correct. That's good news. Do you ever want a win? Like what's it like to not be able to get like, like, what did it feel like for this new medication to work? I guess is my question like, like, that's a win, right? You got to win. They don't come that often for you, I would imagine.

Gail 55:15
No, I don't. I don't. I don't know if I'd do it as a win. I guess I could. Isn't. Because I feel better. I just I don't want to take any more medication. I don't. That would be a win to me is not having to take any more. Like just be insulin. That'd be.

Scott Benner 55:32
Yeah. Isn't that funny? Not funny. But interesting. The idea of like, this thing that so many people curse all the time, you're like, Could we just get back to me having diabetes, right? Yeah. Just for people's edification in case they don't go back and watch the other episode. It any other like autoimmune through your parents lines?

Gail 55:54
My dad's side. Yeah. He's got rheumatoid arthritis. And I'm not sure what else. But oh, he had the goiter, too. He had a multinodular goiter he had is taken out maybe three or four years ago. Yeah, my my grandma had the same thing. Okay.

Scott Benner 56:11
And she lived at night you said? She did? You're not like I wouldn't be like any words of listen to people. But I feel like you'd be like, No, not really. I don't have anywhere to go.

Are you listening to the podcast though?

Gail 56:33
I am clueless. I listened on my runs.

Scott Benner 56:35
Thank you. How am I doing? Let's let's move this on to me for a second. Give you a break. So am I getting any better at it?

Gail 56:46
I think you've done about the same for the last I don't know. However long I've listened. You're so

Scott Benner 56:51
is that bad? No, no. Okay.

Gail 56:55
I did listen to a couple of really old ones. I don't know how long ago. So you've gotten better since then?

Scott Benner 57:01
Yes. Yeah. Okay. I mean, it would stand to reason. But even just the microphone being better, right is like, oh, yeah, it's a huge. Yeah, of course. Huge difference. I just I just a moment ago, when you said that I was like, God, I've made no strides whatsoever. Like, well, at least it's consistent at a level that you're okay with, right?

Gail 57:24
Yeah, I mean, what? I don't know, what do you mean? Give me an example. What are you, I just think

Scott Benner 57:35
you're gonna leave it. You're not? I am not. No, I know. You're not. Again, I'm gonna have to reevaluate my own my own relationships. Because as you started talking, I was like, Why is she messing with me right now? And then I'm like, she's not Scott. She's really nice. She's just being nice. To cover my mouth. I don't know. Like, am I letting people talk more?

Gail 58:06
Yeah, yeah, I would say on that one.

Scott Benner 58:08
By um, when I talk more, do you find yourself thinking like, shut up? Or do you think there must be a good reason he's talking more today?

Gail 58:17
Sometimes. It just depends on on the situation. What the situation? Yeah,

Scott Benner 58:21
yeah. Listen, I have to be honest with you. I've listened to episodes where I've thought, wonder why the hell I didn't stop talking there. And then, you know, there's times when I've thought, I wish you all knew that I was talking for a good reason. And I don't want to like you and anybody who's come on, but sometimes people don't. They don't have the gift of gab, sometimes you got to fill a little bit. So you know, but I know it goes either way. I'm not unaware, I've been using a thing where I can see my percentage of time talking versus the other person. And I check it once in a while to just make sure I'm somewhere near 5050.

Gail 58:58
You know what I mean? Like during the episode, you

Scott Benner 59:01
can't do it during the episode. It's afterwards, you have a process that does a does a transcript for the show. And it'll actually tell the percentage that I spoke versus the percentage that somebody else spoke. And I like I like about a 6040. Because I also do ads and bumpers and everything. So if it comes out about 6040 it's about right. So like I'm actually looking now at a couple of them. Like I just did one with Jenny where we were 6040. Here's one where the the person I interviewed was 68% to my 32% What do you think of that?

Gail 59:42
They must have had a lot to say.

Scott Benner 59:45
Maybe I was sleeping? Can you imagine if it was just I was like just keep talking because it's fine. I don't actually usually feel that I've never the amount of times that I've been I've done a podcast where I thought please I don't I want to do this is only like once or twice and it's usually because I don't feel well or something like that. Sure. So here's one with me and Jenny 5446. Okay, go tell me. Yeah, I figured that part out. It took one nasty email from somebody. I was like cheese. Alright, hold on, I'll go. I'll check myself. Let me go. Yeah, Gail, this is not an invitation for other people to send nasty emails about. They want changed in the podcast. I don't want to hear your complaints. But well, that's pretty much it. How much does your husband help you with all this? Are you just on your own? Like, you talked about all the medications and obviously different symptoms and things that happen and pains and etc? Like, how much can another person be helpful to you? And how much do you want

Gail 1:00:53
I mean, he helps when I when I ask or I mean, he offers to, like if he knows on extra, extra tired one day he'll, you know, he'll step up and do more. That kind of thing. And he does that. Anyway, I should say. He's a good guy. I don't I don't know.

Scott Benner 1:01:14
Your answered tracks your answer tracks that you've been married somewhere between 19 and 23 years. Am I correct?

Gail 1:01:22
It'll be 18 this year.

Scott Benner 1:01:32
So your husband Oh, him? Yeah. I mean, like he loves the kids.

Unknown Speaker 1:01:40
He loves me. I know. He goes.

Scott Benner 1:01:41
Somewhere right now going. I mean, like, I haven't thought about killing her recently. Probably true. Do you think people who have not been married as long hear that? They think like, oh, that won't be me.

Gail 1:01:56
That won't be me. I know. Exactly. Yes. I'm sure I thought that same way.

Scott Benner 1:02:01
The other magical words from when I was young. She's not like that.

Let me tell everybody, something. We're all like that. I totally agree. Yeah, all of us. The more your age, the more you'll be like that. It's not a thing that you can fight against. So that I did wrong, and you're gonna do right, or bla bla, bla, bla, bla. You go ahead to have a poached egg with somebody 15 years in a row. Every morning, or whatever your thing is. You think you think this marriage is just a structure of like old government right to keep us to gather and keep the family together and stuff like that? Like you're fighting against something? That's not natural right now. So I was everyone else.

Gail 1:02:57
thought about that before? Yeah, I don't know. I don't know.

Scott Benner 1:03:01
Gil, tell me a little something about young nerdy Gil. Like, what? What do you remember about her fondly?

Gail 1:03:08
I shouldn't say what do I remember? What

Scott Benner 1:03:11
about young nerdy Gil? Like something fun? Do you remember about yourself from your youth?

Gail 1:03:16
Oh, I don't know that. I was so nerdy. I was just really quiet. So nobody, I was always afraid to talk to people. So I don't I don't know why. But I don't know. I think I'm the same person as I was like, the part of me that's talkative was there. I just didn't like let it out.

Scott Benner 1:03:37
Because you're uncomfortable around other people.

Gail 1:03:39
Yeah, well, yeah. What? I was just worried about what people thought about me and self esteem, that kind of thing.

Scott Benner 1:03:46
Do you still feel that way? No, no. What stopped it?

Gail 1:03:51
Um, therapy.

Scott Benner 1:03:53
Oh, nice. Do you still do that?

Gail 1:03:57
No, he quit too. So

Unknown Speaker 1:04:08
you're shocked me?

Unknown Speaker 1:04:17
Did he see?

Gail 1:04:23
I don't know.

Scott Benner 1:04:28
Is he still in practice, then he just doesn't see you.

Gail 1:04:32
Moving on to something else.

Scott Benner 1:04:36
Oh, that's the most surprising thing you've said. So,

Gail 1:04:43
a good stopping point. So it's

Scott Benner 1:04:46
Oh, you were like it's fine. I'm pretty good now. Thanks. Yeah. So you actually work through some of the ways you felt as a person in therapy. Stuck track through your entire life pretty well and being an adult good For you took a lot it took a while. How much did it cost? You think round numbers?

Gail 1:05:06
I don't know.

Scott Benner 1:05:09
Do you think 10s of 1000s? No, no, not that much. Okay, good. Good. Good. Are you on anything? Have you ever been depressed?

Gail 1:05:20
Yeah, I've taken manager presses before I am not now. No.

Scott Benner 1:05:24
Okay. Do you need to be?

Gail 1:05:27
No, I don't think so. Okay.

Scott Benner 1:05:30
I mean, if you did, literally no one would judge you. You understand that right?

Gail 1:05:33
I do. People wouldn't matter, but

Scott Benner 1:05:37
no one that heard this would judge you. If at the end, you were like I do this we'd all be like, Oh, that tracks. You know.

Unknown Speaker 1:05:45
I can see why.

Scott Benner 1:05:45
I mean, you don't do drink. Socially? Did a weed or anything like that?

Gail 1:05:53
No, I was for the connective tissue pain, but I don't anymore. I haven't. Wow.

Scott Benner 1:05:59
What's not you did not help. But did you feel weird doing it? And you're just no because

Gail 1:06:03
I just just feeling better to where I don't didn't feel like I needed a

Scott Benner 1:06:07
nice was the weed helping before the plaques? Plaquenil Yeah. Yeah. We did help.

Gail 1:06:16
Just like edibles.

Scott Benner 1:06:19
edibles. Oh, okay. You weren't smoking, or vaping. No, I don't. I don't know. Oh, look at you drawn a line in the sand. Okay. Hi, Ron. I don't know what you did a friend.

Gail 1:06:29
Good morning. Let's Chelsea and her husband

Scott Benner 1:06:32
ever steal your weed. Were you ever like, hey, that's for my connective tissue disorder?

Gail 1:06:37
No, no.

Scott Benner 1:06:39
I see. Did he? Did you feel judged for doing that? Was it? Was it a difficult decision to make?

Gail 1:06:44
No, he was pretty encouraging about it. It's something

Scott Benner 1:06:47
you would have told other people.

Gail 1:06:50
I have told a couple people that I mean, not a ton, but yeah.

Scott Benner 1:06:54
Nice. You weren't hiding? Did the weeds lead to extra sex? Is that why he was good with? No, because that's the only reason I can I wouldn't judge anything that lead to extra sex. I'd be like, What do you smoke meth? That's fine. We're having sex afterwards. I mean, I don't love the teeth part. But okay. Okay, all right. How do you think we did this time?

Gail 1:07:17
I feel better this time.

Scott Benner 1:07:19
Yeah. What do you think is different? Is it just that you feel better?

Gail 1:07:24
Probably, because it's more of me. Like, what my real self? Like instead of not, yeah. Right.

Scott Benner 1:07:32
So you, to me, your episode, besides being shocked by how many people have literally abandoned you professionally, is the episode to me is about a couple of things. I think talking to you highlights perspective in a really amazing way. It just, you know, if you're just living with type one diabetes, and you're running around with your head down, like, you know, somewhere out there Gail's got 17 Other things happening, and she's she's going you know, I used to have perspective, okay. I also think that it highlights how important it is to feel as good as you can feel. And especially if you just have type one or you or you have thyroid, celiac some things that are manageable through your actions, or, you know, a simple medication or something like that. The idea that and you know, I used to talk about a lot more when the podcast was younger, but I don't know if I say it enough anymore. You deserve to be the person you are. And, and some people get that. I know it's not fair, some people just get that. But if you keep your blood sugar in a lower stable range, you get to actually feel like yourself, if you put your thyroid levels where they belong under to not at four or five, or it's okay, you get the feel like you're supposed to feel, you know what I mean? If you if you've got if you've got celiac, and you don't eat gluten, you get to feel the way you're supposed to feel like, it's important. You know, and if you can get to the other side of it, because it's not always easy. If you can get to the other side of it, it pays you back like you. I mean, we're just saying you feel better now, but your life is better now than the last time we spoke. Right? Well, that's what this was about me plus laughing at you in an appropriate place. You know, it's hard to laugh at a person who has MS.

Gail 1:09:26
No, I could I could see.

Scott Benner 1:09:28
Like, I have to like, like, when would you jump on? I say to myself, treat gal like everybody else. And you're not the only person I have that conversation with like, there's some people I look at their litany and I'm like, don't treat this person any differently than you would treat her but I don't know if that's right or wrong. It's just that's how it occurs to me like that. That's what you would want. I guess I could have asked you what you would have wanted, but

Gail 1:09:52
that's it. Well, yeah. But yes, that's what I would. I don't like yeah, I don't need special Treatment?

Scott Benner 1:10:00
Yeah, I would find it insulting. Actually. Yeah. If I was you. I could be 100% wrong as I don't have.

Gail 1:10:07
Yeah, well, yeah, I see both ways. So yeah.

Unknown Speaker 1:10:11
But I mean, not that I'm like, I guess always

Gail 1:10:14
have consideration for it too, I guess. But yeah,

Scott Benner 1:10:17
I wouldn't have broken into some like ham fisted 1980s MSX joke or something like that. Like, I don't mean that far. I just mean, like, you're a person, this is your life. I don't see why we would treat it any differently than anything else. You're talking about? Unless you were uncomfortable with and then I would assume you wouldn't be here? Because Correct. You know me well enough to know what's about to happen. So,

Gail 1:10:39
I mean, I'd laugh about it. So. Yeah, so you have a good sense of humor. If I didn't laugh about it, then maybe I would approach it differently. I'm okay with

Scott Benner 1:10:49
it. Good. That's excellent. Did little young. Like y'all play Dungeons and Dragons or just No? Look at you. Like, no, I don't do what those people do.

Gail 1:11:00
No, no. Okay,

Scott Benner 1:11:02
how did you um, were you quiet when you met your husband?

Gail 1:11:08
Ah. So, the first time I met him, no, but then. On our dates. Yeah. So it was very quiet. Did

Scott Benner 1:11:18
he pursue you romantically? Or did you pursue?

Gail 1:11:24
I think I pursued him.

Scott Benner 1:11:26
Okay. Nice. He was remembering if you're remembering correctly. Well, you've been married for 18 years. How long have you been together?

Gail 1:11:39
Probably 25 ish.

Scott Benner 1:11:43
Wow. Like, it's you

Gail 1:11:45
know, we did it a while before we got married. All right.

Scott Benner 1:11:49
Gail, Gil, this is weird, because I do believe I could talk to you forever. And it wouldn't have to be it wouldn't have to be about anything. Like if this was just four hours of us just like going back and forth like this. I feel like it would be a good use of my day. Bye. For now. Were you just like, was did that strike you oddly? A little bit. Ah, that therapist should have stayed a couple more weeks scale. gdb to tell me I can tell you that you're worthy of love. Do you need me to say that? No. No, it just it was funny. You pause you're like, Oh, thank you.

Gail 1:12:35
Well, I mean, yeah, yeah. Didn't accepting compliments like that sometimes. Yeah,

Scott Benner 1:12:42
yeah. It's um, I don't know like you. It's funny. You don't you don't check a couple of my boxes for easy conversation like your your speech pattern and mine don't mix. But I but I don't have trouble waiting for you. But there are some people but but there are some people that when I have to wait for them, I hate it. But I don't hate it. I don't hate it with you. For some reason.

Gail 1:13:06
My Midwestern slow ness is that.

Scott Benner 1:13:11
Yeah, that. But there are times when it's happening, where I'll literally like take a piece of this whiteboard. And I'll right like slow down on it. Because and there are times when it happens. And I'm irritated by it. And I have to let that go while we're talking. It doesn't bother me with you. And you and you. I don't know. I don't know why we get along. So do you feel like we get along? Well? I do. Yeah. I'm not gonna lie to you. If it wasn't for a couple of these diseases. I'd put you on my shortlist. If Kelly dies is what the shortlist is called. I don't think my insurance can handle all this. I don't think I'd be able to take care of you know, I just I just somebody I really liked a lot who works with me with one of the advertisers is leaving their job. And we were having that conversation yesterday which happens you know, you these long relationships with people that are business and, and, and we were getting done. I was like, you're definitely on my if Kelly dies list, and she's like, she's like, we are so good on the phone together. I was like, right, we should never meet each other. This would be how our relationship would be just on the phone. We're very good like this. But she laughed and she did not reciprocate. So no, I didn't hear her go like Oh god, you're on mine. She must have seen a picture of me. I'm guessing

Gail 1:14:40
you actually you. I mean, I don't know you obviously but the way you carry yourself reminds me of my husband a lot.

Scott Benner 1:14:48
Really? And he's a very smart handsome man. Is that correct?

Unknown Speaker 1:14:51
Yes. Yes.

Scott Benner 1:14:54
What about what do you think about it? Like,

Gail 1:14:57
I just there's just, I don't remember it was like Long time ago that I heard one episode that you were talking about. I don't remember you were at the school or something. And a lady like told you to go a certain way in the parking lot. I cannot remember what it was off the top of my head. It was, I don't know, and it pissed you off. And you just kept, I don't know, who drove by and waved at her instead of doing what she told me to do. Because some of you said you don't like being told what to do or something along those lines.

Scott Benner 1:15:28
Yeah, that I think is a psychological issue. But I am not good with being told what to do. I'm better at it. That's my husband. Yeah. I'm assuming I grew up with somebody telling me what to do. And I didn't appreciate it when I was younger, probably. But it helps you sometimes. Like there are times, you know, right before you and I spoke I got off the phone with. If you don't care about this, tell me and I'll stop talking. But my my mom just beat cancer. So 79 years old, she beat it, beat it like she's in remission. And very cool. Found out on a Friday. Yay, my mom beat cancer. The next day, my mom got COVID. So anyway, more happened that weekend, which I won't be talking about yet on the podcast, but you'll hear about one day, it was a weird weekend. Anyway, my mom gets COVID The next day after being told that she's in remission. And they immediately move her because my mom was, you know, I don't know what they call it. They don't call them kennels when you're old. But whatever it is, you don't I mean, and it's like a kennel for people. Let's be honest. Yeah, it's a nice one. But she lives in a room, you know, she's got some stuff a television, and you know, and they move it to another part of the place where the, they call it the COVID wing, and they tell her, you have to stay here for 10 days. So Oh, four or five days into it. My mom calls me and she's like, I am feel better. I'd like to get the hell out of here. And I was like, Mom, but they said 10 days, you know, I think it's a protocol. And she's like, I don't care. And I was like, okay, so I begin calling people and saying, Look at what can we do to get my mom out of there sooner? We can blah, blah, blah. Okay, so like the eighth day comes around. And they call me up and they say the doctor wants to keep your mom here for 20 days. I was like, No, you're not doing that. And while he's worried because, you know, she just she's, you know, just finished chemo. And I said, you're worried about a 79 year old lady that had a complete hysterectomy treated the pain after that with Tylenol and Advil. And then six months later, after six rounds of chemotherapy was in remission you're worried about. And she kicked cancer, the COVID was gone in four days. I was like, what is it you're worried about? Exactly? She said, Well, she can be more susceptible. I'm like more susceptible to what something worse than ovarian cancer chemotherapy and COVID. What are we talking about? I was like, she's okay. And I was thinking if it gets her, she's at, let her go. I told my mom that my mom laughed. She's like, thanks a lot. I'm like, I was trying to make your point for your mom. And so. But then today, I got the call. Today's her 10th day, and they are gonna give her a PCR test today. She needs to be negative. They'll do it again tomorrow. If she's negative, they're letting her out. And I'm telling you that the only reason my mom isn't spending 20 days in that room is because of however it is. I'm wired. Because my brother brothers heard it. And they were like, Oh, that's a shame. I was like, huh, perfect.

Gail 1:18:34
That would be my husband. Yeah. Yeah.

Scott Benner 1:18:37
And if it's the right thing to do medically, well, I'm not getting in the way of that. But yeah, this is just some arbitrary thing. You know, going back a half an hour to your story where your doc, you're like, Can I do it for us? He's like, No, and you're like, come on. He's like, Okay. I just thought like, this guy is saying something, because it's written down on a piece of paper in front of them. There's no reason for my mom for 20 days. Thinking about it. Yeah. So sometimes you come up with like, oh, and sometimes it's really helpful. Yeah, I guess there are times that I've come off poorly. And do you want to hear one last story? Sure. This is about my mom's kennel again. So there's an emergency Bell, right? Because you're old and you're gonna fall. And you need to be able to like, you're not getting out of this one. You know, you gotta be able to call from home. For months, my mom has told me and I've been there and seen it. There's a little like deli bell in her room, like a little ding, ding, ding ding. I said, Mom, what's what's this bell for? You know? She says, Oh, the emergency bell doesn't work. And, and so they gave us this. I said, when you ring it does anybody come? And she goes, No, not usually. Great. And then I'm there a couple of weeks ago. I said, Mom, the break on your walker is not working right. And I tried to fix it, but it was really broken. So I ordered a part four. And, and I and we made sure that the staff knew Hey, my mom's one. One of the breaks on her walker doesn't work, right. Okay, okay, we'll send somebody up to fix it. So apparently a guy comes up to fix it breaks it worse because it was working a little bit and then says there were you should call the company and just leaves the room. So they leave her now with a walker with only one break. So my mom's you know, doing her business one day she stands up gets a little wobbly reaches for the Walker, the walker thing goes out from under she falls forward hits her face on the wall is laying on the floor, fresh from the bathroom with blood pouring out of her nose because she's on blood thinners because you're 1000 years old. And and you know what she did? She pulled the emergency bill, which doesn't work. So after we found out my mom was okay, which she is and everything was fine. I got on the phone, and I said, you know, we need the emergency belt to work immediately. And they said, Oh, yeah, we're trying we're working on it's hard to get people out to work on blah, blah. So I'm talking to my mom about it one day on the phone, and one of the nurses is overhearing our conversation. And I hear this voice go, I'm sorry to overhear your conversation. But they're never going to fix that pill if somebody doesn't make an issue of it. And I said, Are you telling me to make an issue of it? And she was? Well, you know, I wouldn't want to say that. But please, no problem. I said, I'll get your bell fixed. So we get on the phone with people. And it very immediately becomes obvious to me that they're just worried about being sued. My mom fell, she hit her face. And they're and they're talking. They're literally talking like, like lawyers gave them bullet points. And I just finally said, I said, Listen, you don't know me, you don't know my mom. Nobody's suing you here. Like we just want the bell to work. I said, my mom's old. The other people on the floor are old. They need this bell. It's a big deal. Like get it fixed. It should be the first thing you think about when you wake up in the morning. And then they tried to this thing that people do now like, well, you know, with COVID, I'm like, don't give me you can't get the bell fixed. Because a COVID. Like stop it and fixed fix the bell. And they kept making excuses. And then the one person on the call says, Well, I just want you to make sure you understand the bell works in her room. It just doesn't work at the nurse's station. And I went, why did you say? So she repeats it, what she shouldn't have done. And I said, if I buy two walkie talkies, and I give you one, and I have one, and they are our form of communication, and mine works, and yours doesn't work. I said, Angela, do we can have walkie talkies. She's like, well, it works in my in your mom's room. And I said, Angela, I dare you to say that one more time. So then the conversation escalated. I don't remember what happened next. But it ended with me. I might have been yelling. And I think I finished by saying the next time you call me it will be to tell me the bell works. And I hung up on them. And like a couple of minutes later, one of them tried to call me back and I just you know the little thing you can do on your phone or you can say I'm sorry, I'm busy right now I sent her. She waited a couple of hours and texted me. And I responded to her text and I said are you texting me to tell me the bell is fixed? And she said no. And I said then please don't contact me again. And three days later, Gail, you want to know what happened? Yeah, that bell works fine now. So um, anyway, my mom times that sort of takes yeah, sometimes you need just the squeaky wheel. And sometimes you need a wheel that yells at you and says the F word. So yeah. I mean, I tried being nice. I just I called I was like, Hey, I just need you to fix the bell. You know, and they, they weren't going to do it. They were gonna make excuses, and they weren't gonna get it done. That's all. So I like your house.

Gail 1:23:54
It's not that hard.

Scott Benner 1:23:56
Just do your I said to her. I was like, yeah, what's more important today? Then a facility who says they're going to protect old people from having an emergency system that works. I said, what what could be more important for you to do today? There should be nothing else. You shouldn't pick up your phone. I don't want to hear you talking to your family. There's no don't eat lunch until the bell works. It's not hard to get it done. Get it done. And then later, I went to see my mom before she got the COVID and I walked down the hall and this nurse looks at me and just winks at me and gives me the thumbs up and keeps walking right past me. I must be delayed. You told me to get that. Thank you. Yeah. So anyway, I don't know why we did all that. And if anybody made it this far, they're real fans of the podcast scale. So I want to thank them all for listening and say thank you to you for coming on the show. I really do.

Gail 1:24:49
Thank you. Thanks for having me.

Scott Benner 1:24:51
I really do love you. Alright, hold on a second. I

want to thank you all for coming back on the show and sharing her real self with us. I'd also like to thank Omni pod and remind you to go to Omni pod.com forward slash juice box see if you're eligible for that free 30 day trial the Omni pod dash, or if you're interested in the Omni pod five. I'd also like to thank Dexcom, makers of the Dexcom G six, and the forthcoming Dexcom G seven dexcom.com. Forward slash juice box see the speed, direction and number of your blood sugar right there on your device or receiver. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Hey, check out our private Facebook page Juicebox Podcast type one diabetes 33,000 members and going we add about 300 new people every week. You can be one of them tons of great conversation and insight from people just like you and from people who have been around diabetes a lot longer.

#838 A Look at Tidepool Loop

Howard Look is the Founder, President, CEO of Tidepool.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 838 of the Juicebox Podcast.

Today on the Juicebox Podcast, we're gonna take a look at tide pool. Did you feel bad pun? That's right, Howard look is on the show. He's the founder, president and CEO of tide pool to talk about tide pool in general, and the tide pool loop app that just received FDA clearance. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. We're becoming bold with insulin. If you're a person who has type one diabetes, or is the caregiver of someone with type one, please take 10 minutes out of today to go to T one D exchange.org. Forward slash juicebox. All I'm asking you to do join the registry, complete the survey, it should take you about 10 minutes, and you complete that survey. Your answers will help diabetes research to move forward. T one D exchange.org. Forward slash juicebox. I have a moment. So let me tell you that the Juicebox Podcast has an entire series worth of algorithm based episodes, including a ton about loop, check us out on Facebook, or at juicebox podcast.com. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, you can find out all about that little meter at contour next.com forward slash juicebox get the meter that my daughter uses. Speaking of what my daughter uses, you could get your diabetes supplies the way we do from us med get your free benefits check right now at 888-721-1514 or by going to us med.com forward slash juicebox. quite a quite a team actually. And if you don't mind before we talk about everything that's going on recently. Can you talk about that? And you said you found it the whole thing? Was it just you in the beginning? Or is it you and a handful of people? How did that go?

Howard Look 2:17
Yeah, so it actually goes back to 2012 2013. So my daughter Katie was diagnosed in 2011. With type one, I was actually working at Amazon at the time, it was the consumer electronics subsidiary of Amazon called lab 126. And Katie gets diagnosed and my initial reaction was oh my god, I knew nothing about diabetes, I didn't know what insulin was, I didn't know there are different kinds of diabetes. And so it was really a crash course I think, like for a lot of parents. And you know, very quickly into our journey. She got put on a Medtronic insulin pump and originally the the enlight sensor. I'm not exactly answering your question, but I'll get to it in just a second. Because I think it's kind of part of the journey. So she was on the enlight sensor, which for her just didn't work. Like it wasn't comfortable. It wasn't accurate. You know, she would cry every time. It had to go in, we call it the harpoon. It just wasn't right for her. And fortunately, right around that time, is when the Dexcom g4 came out. And so then she's still on the Medtronic pump, but using a Dexcom G four. But we have this crazy situation where at the time, neither the Dexcom software nor Medtronic software would run on my Mac. And I was like, I can't see your data like this is crazy. And so, you know, I literally was saying who writes this stuff? Like, why is it so hard? It shouldn't be so hard to see the data. So I started asking around, I started meeting other people that felt like I did. I always like to give credit to Scott Hanselman. He had this great blog post in 2012 called the sad state of diabetes technology. And if you scroll, you know, 130 people down in the comments, you'll see me going Hi, my name is Howard. This is all kind of crazy. I'd like to do something about it. Anybody else want to do something about it? And so I started getting introduced to people, you know, like lean Desborough, like Brian Maslin people who were also tinkering and trying to make things better for living with type one. I eventually got introduced to a team of folks up at UCSF, Dr. Salia de and Dr. Aaron nine Steen and Dr. Denise Huang. And they had started a little company called Green Dot diabetes with another GeekDad for lack of a better way of saying it like me named Steve McCann. He also had a teenage daughter living with type one, and had been doing a little bit of hacking to visualize her data. And when I met that Team Steve and the doctors at UCSF. I was like, Oh my God, they're doing something about it, I want to do something about it. I initially proposed to Steve that he and I go to a startup together. And he said, You know what, I don't really want to do another startup, I want to go do this other thing. But if you do it, I'll give you your initial funding or his wife at the time, and he gave us our initial funding. And that was how tide pool was born. So it started as Green Dot diabetes for people at UCSF, and me, and Steve McCann, we decided to rename it tide pool in May of 2013. And that's when I became CEO. And we never looked back. From that point on, I started meeting people. The actual first person I hired at the time was Ben West, who I think is, you know, super well known in the DIY community. He's the guy who did the original reverse engineering of the Medtronic insulin pump, which ultimately led to open APs and loop and lots of other great things. I ended up meeting, Brandon Arbeiter, who I convinced to move to California and start typo with me. And the rest is history. As they say, We started small and humble. And we've kind of slowly grown over the last 10 years.

Scott Benner 6:18
It's it's an interesting way to build something just continuing to call out of this group of people who are all very focused for personal reasons. And yet, very technically adept. I'll tell you, there's I recognized almost every name you said. But I want to tell you that I did an interview with Dr. D. Once it's one of the best conversations I ever had about diabetes.

Howard Look 6:39
Oh, he's amazing. Yeah, I love it. We used to call him the basil whisperer. He is so good. And He's so calm, but so insightful. He can look at data and just go, Aha, we should look at your Basal rates between 3:30am and 6am. Or high, your ISF is off by 10%. At this time of day,

Scott Benner 6:58
I remember saying something that he agreed with, and I was so proud of myself. I was like, Wow, all right. But yeah, we had such a what I would consider to be a geeky conversation about using insulin. That was just really fascinating, and very, very informative. I still hear about it from people, they say it's one of the best episodes of the podcast. Oh, that's

Howard Look 7:17
great. Yeah. Solly dr. D, he is amazing. I consider him a close friend. I was actually just in touch with him earlier this week. And he was our original chief medical adviser at typo please tell

Scott Benner 7:32
him I said hello, if you see him again, Burwell. So. Okay, so I understand how you all are then aware of this loop algorithm that exists in the world, it's being made just by people. And, you know, we're gonna use words that if people don't understand the idea of sharing code online, I don't even understand what I do to be perfectly like, honestly, here like, Yeah, I'll give you an example. I have a GitHub account. I don't know what that means. I

Howard Look 8:00
happy to explain it.

Scott Benner 8:01
No, no, if you explain to me to go right through my head, and out the other side, which I think it's good about what you guys did, you know, lovely people will jump on zooms with me and help me rebuild my daughter's loop app sometimes. And as I'm doing it, I think, Oh, I do know how to do this. But I my brain just doesn't work that way. But my daughter has been using loop for a number of years now. And she began, I don't know how it I'm sorry, you my daughter is 18. She's in college. She's a freshman, she was diagnosed when she was two. So you have some context. And a listener of the podcast came to me one day and said, you should put your daughter on loop. And like gave me the big like Sal about it. And later, they came on the show to tell me that they just wanted my daughter to be on loop. So I could figure out how to use loops. So I could explain it to other people. And I was like, okay, but wow, what a big difference. Because I had taught myself I didn't realize that at the time. But I had taught myself to sort of be a living algorithm to to add basil and take it away and Bolus in strange places where nobody would ever think to Bolus and you know, that kind of thing. And I thought I'm so good at it. Like we don't need this. And you know, but who I was so wrong, you know, because I sleep now like a regular person. And you know, and my daughter is in college, taking care of herself. And you know, and maintaining a onesies that are just beyond respectable and eating what she wants and all this stuff. So I'm always very, very grateful that that person came to me and said that but it threw me into a world. That was at first it was off putting like, you know, the first time someone says to you that a bunch of strangers like faceless people wrote code that is going to know it's going to talk to your insulin pump and a CGM and it's going to make decisions about your insulin. It's mind numbing at first like Well, that can't be right. Like that. Like how does that happen? Ben, but then one day you guys came along and said, We're gonna take that code, and we're gonna get it FDA approved. And again, I was like, I don't understand how that works, either. So can you tell me that first? How was it? I know it is I just don't understand the process. How is it okay for you to go online and be like, here, we're taking this code? And we're going to put it through the FDA? Is it because it doesn't belong to anybody to begin with? Or can you explain that whole thing to me?

Howard Look 10:26
Yeah, it's a really great question and really gets to the heart of the ethos of the do it yourself and open source software development community. So you mentioned GitHub, GitHub is just a place online where people like to store their source code. And it happened to be very happens to be very popular with people in the open source community, as a way to share their work with other people. And so to tell the story, I have to back up a little bit, my daughter is in the same zone as your daughter, she's 22. Now was diagnosed when she's 11. She's a senior in college now and doing great. And back when she was a freshman in high school, one of the first open source do it yourself projects that came out was called Open APs. Scott Lee brand and Dana Lewis, along with building on top of the work that Ben West and John Kostik had done, made that happen. And my daughter, Katie, is Dana has the actual list. I don't remember the number. It's somewhere between 15 and 20, was my daughter was somewhere between number 15 and 25. And I don't remember the actual number, but it was very early on. I started meeting other people like Brandon Arbeiter, my colleague and Ben West, who were using open APs and getting amazing results. Like you, my wife and I, we were really struggling, I think is a fair word, you know, we would take turns getting up at night to check our daughter's blood sugar when she was having a rough night, we really knew there had to be a better way. And we went I started seeing what was possible. Based on a software algorithm making the decisions, it was just super clear to me, that software could do a much better job of making the minute to minute decisions like you and I can do a great job or daughter's can do a great job. But we're not going to stop every five minutes and do the math and figure out what the right thing to do is tirelessly, the software can do that. And so I did the work to build open APS for my daughter. In the beginning, it was this clunky rig with a big giant battery and a Raspberry Pi and the CareLink stick. And I every day, my job in the morning was to pack it all up and put it in a little camera case and stick it in her backpack and send her off to school. And then every night I took it out and made sure it all got charged and you know, logged in to make sure everything was working. Okay. And even with all that effort, it was totally worth it. Because like you said, there were really two big impacts to that one was my daughter, for the first time since being diagnosed could go back to living a much more normal life, she could just go about her day as a teenager, and not have to worry that she was going to go low or not have to worry that she was going to go high, because the system would just deal with it. And then the big win for my wife and I is not only could we worry less about her, we slept better. So it was just better for us as parents and better for our marriage and just better for our family. So it was super clear to me early on that that was the way things needed to go. Fast forward a couple of years. Loop becomes a project I was very fortunate to see loop early in its development cycle. I think the first person to show it to me was Ben caimans. At the time, he was VP of Engineering at Cana COMM At Academy. He lives with type one diabetes. And he was friends with Nate rec lift. Nate wrote the original version of a loop. And I went out to breakfast with Ben and saw what he was using saw the Reilly link the little doodad that you need in order to make it talk to a Medtronic insulin pump at the time. And I was like, what is that show me how that works. And he talked me through it. And so I was immediately hooked. I immediately got myself a Reilly link. I went and built it myself at the time early in the evolution of do it yourself loop. It was one big giant Google document that Jeremy Lucas and Katie De Simone had worked on. And I powered my way through that Google document. It took me half a day, but got it up and running. And it was incredible. So not only really didn't have that automation component, the ability to make decisions every five minutes, but because it was iPhone based, it meant I didn't have to bundle up that crazy battery, Raspberry Pi, stuff to send with my daughter, she could actually just control her diabetes from her phone. And it was it was absolutely mind blowing. So the cool thing about the work that all of these people did, you know, going way back to Ben's work, reverse engineering, the Medtronic insulin pump, John caustics, work, reverse engineering the Dexcom je for at the time protocol, the work that peach Suam did in order to design the Reilly link. And then the work that Nate rake lifted to build and publish loop. They all made it openly available, every single one of them said, I've done something good, this is going to be helpful for the rest of the diabetes community. And I'm not in this for the money. I just want to help people. And so they made it available. And to me, that is just one of the incredible stories out of the diabetes communities. How many people have done that how many people have said, This is not about the money. This is about helping our kids live more normal life, this is about helping ourselves to not have to have fear that our kids are going to make it through the night. And so we're just going to put this code out there and help as many people as we can. You asked, So how does it work? So everybody I mentioned, put their code online, most most people use GitHub these days. But it's not always GitHub, it's just a place to store the source code. And they generally make their code available using what's called a permissive open source license. So a lot of people have heard of the GPL, the GNU Public License, that's a less than permissive open source license that requires you to contribute your changes back. Lots of good reasons to do that. There are also permissive open source licenses. The two most notable ones are the MIT license and the BSD license. And those two licenses are really short. And you put them at the top of your source code. And it basically says, use it your own risk, do whatever you want, take it, change it, it's yours. The only requirement is that you put this copyright notice at the top of the file, you can do whatever you want. And that ability is what lets people take all these components and mix them up and do new wonderful things like create open APs and create a loop. And there are lots of other examples of that. So what we at tide pool decided to do was to take that open source code that Nate had published that each one had published. And we brought it in to tide pool. And when I say we brought it in, what does that mean, on on GitHub, you do what's called Creating a fork, it's really just making a copy of the code. But now all that code lives in tide pools account. And so we can make changes to it, we can publish those changes, and other people can take them if they want to. But because all of those people publish their code with a permissive open source license, it also means that we can bundle it up and package it and take it to the FDA and say, Hey, here's this work that we've done. Is it okay for us to call this a product that we're going to ship to the World Within FTAs regulations, and put it in the app store? So that's the work we did between 2018. And now 2023?

Scott Benner 18:48
Wow. Can I ask a question about that? Yeah. What stops somebody now that you have an FDA approved from resharing, the code online as the official tide pool code that you can just do DIY

Howard Look 19:00
does, nothing, nothing stops them. And in fact, we have published all of our code via open source that they can't call it tide pool. Dry pool is a trademark trademark name, and they have to get our permission to do that. They also can't say it's FDA clear. The thing that is FDA cleared is the package of the software compiled built. That includes all of the clinical evidence that they that we submitted all the verification and validation testing that we did all the human factors testing, we did a long laundry list of things that we needed to do in order to submit it to the FDA that we own that FDA clearance is that clearance.

Scott Benner 19:41
It's a that's why I wanted to bring it up that clearance encompasses much more than just the code that is the app. It's That's right. We're working on for all these this time now.

Howard Look 19:53
That's exactly right. In fact, if it were just the code, it would be easy because most of the code existed for us As long as DIY loopers have been using DIY loop, the work in getting to FDA clearance is a whole bunch of things. And I won't go into all the nerdy regulatory detail, but you need to submit clinical evidence. So the way we did that, with the FTAs encouragement was we collaborated with the DIY community and our friends at the Job Center for Health Research. And we did the jig, or sorry, the loop observational study. So the observational study loop was over 1000 people using the DIY version of the loop, many of whom hang out in the loop Facebook group, over 850 of those people ended up submitting at least six months, if not 12 months worth of data that we then gathered, actually, the Job Center for Health Research gathered it, they then did a bunch of statistical analysis on that data, we ended up with a two or 300 Page clinical study report and a bunch of other data analyses that we did. That package of clinical data is part of our submission, and was part of demonstrating to the FDA that the loop algorithm was safe and effective. So that's one big piece of it. Another big piece of it is what's called verification and validation. Most people just call it V and V for short. And that's really the effort to not just test the software, but to document with full traceability that you know that the requirement, the specific user story that is intended to be done, is working the way it's intended, and that you can demonstrate through test documentation that you have completely fulfilled that requirement and have reduced whatever risks may exist in that software. So we did a huge risk management effort, we did a huge verification validation effort that was part of our submission. And we're super proud of that. We also did Human Factors testing, one of the things you're required to do with an FDA submission is demonstrate that your software can be used by the general population. So we actually along with our partners at a firm called core HF and Philadelphia, ran rigorous formal Human Factors usability studies, where they gave people very specific tasks, and had watched them, do those tasks, and then recorded the data. Now, sidebar on this one. This is one of the things that was really challenging about our submission, we were ready to start our human factors test thing right around February, March of 2020. And typically, the way human factors testings work is you bring people into an office, and you sit them at a table and you give them the training, and then you have cameras all over them. And you have a one way mirror and you record the whole thing. That's all fabulous, unless a global pandemic breaks out. So right around the time we were starting, are getting ready to start a human factors testing, we had to completely redo the Human Factors protocol, because of COVID-19. We ended up running are human. So first, we had to redo the protocol to make it a completely remote human factor study. So people did the study from home, we recorded them over zoom, we recorded the screen of what they were seeing on their phone. And we did all that. And it was I don't know if anybody had done it that way before. But it was certainly new and novel for us and new and novel for the team we were working with. So we had to generate all that data and then submit that as part of our submission. And we did it it took extra time. But by August, September, we were doing full remote human factor studies.

Scott Benner 23:53
Can you tell me? Did you learn enough about the process with the FDA that if you had to do it again, do you think there would you be able to streamline what you did the first time? Was there a lot of learning? Oh,

Howard Look 24:03
heck yeah. Heck yeah, there was a ton of learning. The FDA calls us a first time sponsor, tons of things that we would be much, much better at doing it the second time. On top of the fact that now that we have a cleared system, that system becomes what's called a predicate device. So any future submissions we do will refer to this submission and say everything about this is the same except these parts and then they only have to look at the iterative parts.

Scott Benner 24:35
You know why I'm asking you that right? Because absolutely one of the best parts of loop is how, how flexible it is, and how it it morphs and changes so quickly. And you know, people from from my perspective, you feel like that happens more quickly, because you don't have to go to somebody at the end of a change and say, Hey, is this okay? But like, I mean, certainly example like I, what the version you have gotten through like, when did you start? What like what, what? What year did you grab the code and start this whole thing.

Howard Look 25:10
The process started in earnest mid 2018 2018.

Scott Benner 25:14
So now in 2022, my daughter's using loop three, I guess. And in the past, I've used the Peet's branch. I've used Ivan's branch I've used you know what I mean? Like, I've used so many different things I've used the auto Bolus I've used, you know, what this one is going to do? I think was going to make adjustments through basil adjustments. Is that correct? And if so, are you gonna keep going? Like, are you? Like, are you in a back room right now planning on the next thing or like, I know, it's weird to ask before you get the thing out. But you know,

Howard Look 25:46
not at all 100% We are absolutely not just thinking about but working on subsequent versions of tide pool lube. And you're bringing up a really important point. And this is where what we've done, which is to mesh the world of regulated medical device software with the world of do it yourself innovation. We're now seeing what that means. We submitted in December of 2020. It's now January of 2023. That was a long review process. Some of that was due to the pandemic. Some of that was because it took a lot of time to work through with the agency, what it means to build a truly interoperable system. And we can talk more about that. But what we have now becomes the foundation for all future iteration not just for us, but for anybody else that wants to submit a device that refers to type a loop as the predicate device. So yes, we definitely learned a ton and future submissions will go way faster because of that. But also, we can build upon the work we've already done. So by way of example, since your daughter is a looper, you may know about the overrides in DIY loop. So overrides showed up in DIY loop, very much near the end of the loop observational study. And what that means is most of the clinical data that we submitted, does not include data with people using overrides. So we can't we couldn't in our submission in December 2020 include overrides as part of the functionality. Now. It's clearly up and running and working in the DIY community. We have a version up and running in our development branch. And what we can do now is on top of the clearance that we already got go back with a another submission saying, Here's new clinical data, here's New vnv data, here's New Human Factors data, we now want to add this functionality on top of what we already submitted to and it'll be much easier to do that.

Scott Benner 27:57
That's very cool. Okay, that's amazing. I appreciate you giving me that. Like, for everybody listening, honestly, because there's a lot of words like the it's loop. If you don't know anything about it, you're listening right now you're like DIY, that means do it yourself. Okay. And then, you know, like, there's just too many phrases and words that I think people don't even like you say Raspberry Pi. Like, we all know what that means. You know, then I know what it means. But you know, So context is important, I have to say, so

Howard Look 28:26
maybe I can kind of build on that just for one second. Yeah. It's It is one thing I'm gonna make super clear the thing we did, makes typo loop not be a DIY do it yourself project. So DIY loop will continue to exist, the we are not waiting movement will continue doing its thing, innovating and trying new things out. And I love that I encourage innovation. And I'm very, very happy that the DIY community exists and will continue to exist. I pull loop is not a DIY project type of loop will be in the app store, just like any other app that people download to their phone. And I think that's one of the reasons why the work we did is so important. Because there are a whole lot of people that don't want to build the rest their own system. People who are like X code, I don't want to deal with compiling GitHub exco bla bla bla bla bla, I am dude, I am one

Scott Benner 29:20
of those people. I don't I don't want to do it. And you know, the things that machinations we went through to make sure that my daughter was okay when she went away to school and to make sure she was covered if the app should crash or like something like that. I don't want to live through any of that. So some at some point, then you're going to be able to go to your doctor and get a prescription that lets you go to the app store and download your app. Is that right? Is that how that's gonna work? It's

Howard Look 29:47
close. So the way it will work is typo loop will be in the App Store. Anybody will be able to download it just like you download any other app from the App Store. In order to activate it. You're going to need an activation code, which you'll get through your health care provider, we've created a healthcare provider portal where they can go to create a prescription. And this isn't like a prescription that you take to CVS or Walgreens, it's a digital prescription. But it will send you a code through text message or email that once once you type that code into tide pool loop, it unlocks all the functionality so that you can use it. And it will cause your entire set of initial settings, which you'll establish with your health care provider to get downloaded. Now, a lot of people will say, Well, wait a minute, can I change the settings by myself? And the answer is absolutely, positively Yes. It's just that initial set that your healthcare provider will establish. We all know that diabetes is self managed disease, we all know that there are some people that are comfortable changing their settings on their own. And there are lots of people who like to do it in coordination with their health care provider. We've made it so that the health care provider works with you to establish the initial set, but then you can go in and modify it over time.

Scott Benner 31:07
Okay, that's really great. Do you think there's a thirst with the pump companies that you have agreements with? Do you call them agreements? Who's it going to work with right when it comes out? I guess is the way I should ask.

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Howard Look 36:02
Yeah, so let me tell you the history of that, and then I'll bring you up to speed where we are today. So in 2018, we announced a development partnership with insolate, makers of Omni pod. In 2019, we announced development partnerships with both Medtronic and Dexcom. Now, let me take a step back for a second. In order to use typo loop you need three things. And these three things are all part of what the FDA calls their interoperability pathway. You need a continuous glucose monitor which the the FDA calls an IC CGM for interoperable continuous glucose monitor, you need an insulin pump. And the FDA calls that an ace pump or alternate controller enabled in insulin infusion pump, and then you need what's called an IEC. That's us an interoperable automated glycemic controller. So you need those three pieces. I CGM ace pump IRGC, where the IRGC with tight pull. So Dexcom is still very much a development partner with us. And we're very much looking forward to other continuous glucose monitor companies being becoming compatible with type polu. Medtronic in insolate, at this point in time, have said that they will not be our launch partners for as as pumps, we're very grateful to them for supporting the development of tide pool loop, I will tell you that we are working with another ace pump partner that isn't ready to talk about who they are yet, but we're really excited about them. It's a company that everyone knows and we think everyone loves, and it's going to make a really great combination with tight pollute. The great thing about type ULoop is that it was architected from the ground up to be interoperable, meaning we can add new CGM and add new Ace pumps. And we don't have to submit new evidence to the agency. Part of our submission was a set of plans and processes and nerdy regulatory speak. They're called SOPs, standard operating procedures, we came up with SOPs that we agreed with the FDA. As long as we follow those procedures, we can add new devices over time without a new submission to the FDA. And so for us, we feel like that's pretty groundbreaking. Typo loop is the first truly interoperable system that is designed from the ground up to allow new devices to be added over time. Without a new submission.

Scott Benner 38:37
This might be a question I shouldn't ask you, but do you think you'll get those companies back?

Howard Look 38:43
I'm never gonna give up. Like, I think interoperability is the best thing for the diabetes community. I think if you're a person living with diabetes, you should get to choose what CGM you use, what pump you use, and what the user experience and algorithm is that you use to manage your diabetes. I think interoperability is a great thing. I think the community appreciates this approach. And I think over time, we will see that company companies will start to embrace it as well.

Scott Benner 39:14
It just, I mean, from my perspective, not knowing anything that's going on in any of those companies, but it just more options seems like a good idea. You know, I think so. Yeah. Like I, you know, it took right up until you said that, I sort of had like this little like the 10 year old me inside was all like, oh my god, the world is going to work the way it's supposed to, you know, we're going to, you're going to get this thing and it's going to just work here or here or wherever we want it to and pumps will just become like, like wheels, right? Like I'll have a car and then I'll pick which wheels I want to go on. And I thought that'll be terrific. And then you said that I was like, Oh, okay. So don't give up because and if they're listening, you should do that. It's it just makes sense. And it It's the only thing. I don't know. I mean, I can see why they wouldn't want to, I'm trying to think it through. But the other idea is that it's gonna bring more people to pumping in general. It just that makes sense to me. Anybody who's used lube would tell you I'm sure that's partly what was what happened when you were talking to the FDA. It's, it's astonishing how well it works. It's just it's really astonishing. And so, you know, I hope everybody gets a chance to use it. I have a lot of questions. Keep going. All right, I'll try to rapid fire them as best you can. Although it's the end on a Friday, we've all given up on enjoying this day, right? So we can just keep going. So you haven't joined me? At the moment? Do you have pumps that are on a compatibility list? Or are you not at that point yet?

Howard Look 40:48
We do have compatible pumps, we're not able to talk about who they are yet. Because the pump makers need to make their own decisions about when they're going to let the community know that they are going to be delivering a compatible

Scott Benner 41:02
device, whoever they are, in my opinion, they're going to have a great stranglehold on some great social media and the ability to make some exciting announcement that people are going to get behind. So I can't do you have a timeframe, you think

Howard Look 41:15
it's going to depend a lot on the device partners, and so we're ready to go whenever they are, we're gonna have some work to do with them to coordinate things like customer support handoffs, and pricing is a question that a lot of people want to understand we still going to work through that. How it's going to work, you know, will they subsidize lube? Will that be something that insurance pays for over time? Those are all details that we still need to work out with them.

Scott Benner 41:43
So I have a question. It's gonna sound shady. Sorry, I'm getting off the list here. Oh, they really stop somebody from using it. I mean, they can't stop them from DIY using it, why would they be able to stop them from using your version of it?

Howard Look 41:59
Well, our version, we are the only people that can put it in the app store. We are prohibited by law as a cleared product from distributing this until we've met the requirements that are laid out by the FDA. And one of those requirements is that there is a compatible ace pump that it can work with. So until there is a compatible ace pump, we may not put it in the app store. And as soon as there is a compatible AST pump, we can put it in the app store.

Scott Benner 42:28
My My point was that once that happens, can't I just pair it with a different pump? Like what would start?

Howard Look 42:36
Well, our code will only work with cleared compatible AST

Scott Benner 42:41
pumps. So it's on your side that it'll be it'll be I'm not calling it hobbled. But it'll make sure on your side that it only works with what's

Howard Look 42:49
right or clear. It only works with with products that meet the requirements of a cleared third party, interoperable ace pump. And

Scott Benner 42:56
one of those requirements is that the pump company wants the app to work with their pump. That's right. Yeah. Okay. Got it. Alright, thank you

Howard Look 43:04
that well, actually, let me let me let me correct that that's not completely right. There is a world in which a pump company could deliver a pump, which conforms to diabetes device interface standards, there are Bluetooth standards and I triple E standards. And it is possible that a company can deliver a pump that conforms with those standards, and not specifically say, here are the controllers that it works with. They could just say it will work with controllers that meet these standards. Yeah, that is, hypothetically possible. We haven't seen that happen yet. But I am optimistic about that in the future.

Scott Benner 43:46
I think in the original Jurassic Park movie, Jeff Goldblum says something like life will find a way and I think that's right here. So okay, we'll just keep a good example. Yeah. The algorithm that you have, will it consider digestion times? This is obviously a question from a looper, like, can you tell it like, Hey, this is going to hit more like pizza or more like candy or three hours or four hours? Can you set those with the app?

Howard Look 44:10
Yeah, absolutely. That is one of the unique and wonderful features of tide pool loop. This also exists in DIY loop. When you do a meal Bolus, you not only say here are the number of grams of carbs that I'm ingesting, but in loop you use an interface that uses emojis and the default emojis are lollipop taco and pizza. lollipop has the fastest carb absorption time 30 minutes and then taco and pizza are slower so you can say, here's a slice of Grandma's lasagna and it's clearly more like pizza than it is like a lollipop. So you tap the the the pizza icon

Scott Benner 44:54
can you still post date a Bolus? Can I you can Yeah, excellent. Yeah,

Howard Look 44:59
that's an Another great feature that we love about loop. And again, this exists in both DIY loop and tide pool loop. It's a feature that I think is really great for parents of small kids with type one, for example, you put a sandwich in front of your kid, you guess it's 30 grams of carbs, you Bolus for 30 grams of carbs, and then your kid decides to only eat half a sandwich. Well, it turns out with loop with type a loop and DIY loop, you can go back and edit that meal Bolus, it obviously doesn't pull insulin out of the body. But what it does is it modulates all future delivery of insulin to make up for the fact that it now knows that you ingested fewer carbs than originally planned,

Scott Benner 45:46
I would say that I think two of the best features that I would use all the time is that just be able to like, go back and say, Hey, we said 40, but you know, it was really 30. And you just tell it because maybe it can't get the insulin back. But it can start making decisions in the future with the idea that, hey, I think we have 10 carbs, too much insulin going, maybe I can take the basil away for longer or do something to try to impact it. And then the other thing is to be able to tell it, look, I'm gonna have 20 I'm gonna have a 20 carb impact from fat from French fries, like 90 minutes from now. And then when the loop starts seeing the impact comic goes, Oh, and you don't have to go back again and make a secondary Bolus. It's it's the loop version of, you know, like a square wave Bolus or something like that, which is

Howard Look 46:32
exactly and besides having knowledge of the carb absorption time of what you ingested. The other nice thing about the loop algorithm is that it pays attention to how your body actually reacted. Its dynamic carb absorption is the term it looks at what it predicted what happened and what actually happened. And then it uses that iteratively over the course of the absorption of the carbs in the insulin to make modifications to its prediction.

Scott Benner 47:05
Did you have to get clearance for different insulin surges that lie on the device manufacturer,

Howard Look 47:12
we did have to get cleared for different insulin, so very specifically tied pollut is cleared for use with chemo OG and Novolog. A lot of people ask about fiasco, during the clinical study, it was pretty early in the adoption of Fiesta, there wasn't a lot of data from VSP users. But over time, I think we can collect more clinical evidence and hopefully broaden the labeling to include other insulins. And just while I'm on labeling, it's labeled down to each six. Again, because there was plenty of data in the clinical study to support that. And overtime, I would expect that we can expand that as well.

Scott Benner 47:52
Wow, hey, everyone does but don't forget a Piedra. Don't worry, I know you're not going to but it's my daughter uses fantastic. Target blood sugar's user definable all the way. I mean, with regular loop, I don't know where does it stop you.

Howard Look 48:11
With DIY loop? I don't know the answer to that question with tide pool loop, the target range that is configurable by the user to anywhere between 87 milligrams per deciliter and 180 milligrams per deciliter.

Scott Benner 48:26
He's just trying to make me cry. Howard, is that what you're doing? That's beautiful. Thank you.

Howard Look 48:30
Thank you. I'm pretty happy.

Scott Benner 48:32
You should be. That's me. Hey, let me ask you a question. For the other pump manufacturers that are listening to this right now. And they're listening. So how tough was it to get clearance down to 87? Did it really? Was it really that tough of a slog like because they're all at like 112 or 110? Or something like that?

Howard Look 48:52
Well, you know, I don't know how to answer was it tough. It was a lot of work to gather, analyze and present the clinical data in a way that made it clear to the agency that this would be a safe and effective way to use tight pull loop. So was it tough? I would say it was a lot of work. And we're very grateful to the participants in the loop observational study, because the thing that made that possible was the people that were willing to do all of the work that it takes to participate in a clinical study and to make their data available so that we could include it with our submission.

Scott Benner 49:36
How valuable was that? That you were basically working with pioneers instead of people who were called through and found through like, the regular way they find people for stuff like that?

Howard Look 49:47
Oh, it was to me just an incredible testament to the willingness of the community to pay it forward. Yeah, like it is a ton of work. My daughter has been in several clinical studies. I don't know if your daughter has done that but you It is hard work. You have to answer questionnaires you have to install software to submit data, you have to be willing to let people have access to your data. You have to take home HBA when C kits, like it is a lot of effort to participate in a clinical study. And one of the amazing things about the loop observational study, as I said earlier, there were over 1000 people enrolled in the study, over 850 of which submitted at least six months and in some cases, 12 months of data. That is an enormous quantity of data, which you don't typically see in clinical trials for medical devices. In fact, if you think about it in terms of person days of use, in the study, the loop observational study, had three times the data of the Medtronic 670 G, pivotal study, tandem control, IQ study, and insolate horizon Omni pod five study combined, combined three times the data,

Scott Benner 51:04
do you know that I did a little survey? I, I get a lot of help from wonderful people sort of like us. So I, this MPH student came to me. She just just graduated from Hopkins, and she wanted to help the podcast somehow. And she said, How can I help? And I said, Well, I'd like to do a survey, like a legitimate survey about how the podcast helps people. And she helped me put it together. And we're still collecting at this point. But we've only been at it for about two and a half weeks, we have well over 700 respondents. And she just texted me one day. And she said serious medical organizations struggle to get anywhere near this number of respondents to a survey and I said, Yeah, well, these people are motivated, because the podcast helps them like if they're trying to give, they're looking for a way to give back. And it seems like you had the very same thing. So is it fair to say that the goal to having an 87 target on your system, get through the FDA is your desire? Your desires? What made it happen, right, your desire to do that, to well, it

Howard Look 52:06
was very clear. So first of all, before I answer that, I need to give a huge shout out both to the looped community that people who mostly participate in the loop Facebook group, but very specifically to Katie De Simone. Yeah, Katie was the conduit. She was the person who sat in that community and said, Hey, everybody, you've all been asking me how you can help pay it back or pay it forward. This is how you can do it. You can participate in this clinical study. So Katie's work to coordinate all of that, basically, as the liaison between the loop community. And the Job Center for Health Research that ran the study was just absolutely incomparable. We could not have generated all that data without Katie's efforts. And without the loop community, we

Scott Benner 52:54
don't know each other, personally, but I have such a warm feeling towards her because she's the first person to come on the show and just kindly explained to me while I was going, I don't understand I don't understand, like walking through a loop was to me so many years ago now. Yeah, yeah. He's

Howard Look 53:09
an amazing human. And I love her dearly. Yeah,

Scott Benner 53:11
me too. Okay, so. Alright, so 87. Cool. I don't even care what the top number was.

Howard Look 53:17
Oh, I didn't actually answer your question. Oh, sorry. Yeah. Yeah. So first, how did we come up the data with the data, and that was because of the loop community and the work that Katie did interfacing between the Job Center for Health Research and the loop community participants in that study. At the end of the day, we took all of the data. And we looked for very obvious places where the balance of risk of hypoglycemia and the safety of the lower target range made sense. And so that's just a ton of data analysis work that was done both by our data science team, and also the Job Center for Health Research. And then ultimately, it was a back and forth conversation with the agency where we presented the data we showed them where we thought the lines should be drawn and why we thought those lines made sense. And they agreed.

Scott Benner 54:09
I feel like the answer to this question is going to be no because of the time, the timing when you jumped in. But does the app have the ability to enter non pumped insulin like a Frezza or an injection? And to give it its iteration?

Howard Look 54:22
That's a great question. It currently does not have the ability to enter outdoor, non pump insulin. That's obviously a feature that we know a lot of people would love to have and some will consider for a future version of title.

Scott Benner 54:37
Okay, I'm sorry, I'm scrolling past the the questions that and by the way, it as we're thanking people, the listeners of the podcast sent four pages of terrific questions for me to talk to you. That's great because they probably know how or the what would happen is I would start pontificating, and then you and I like an hour and a half from now we'll be talking about something silly and they'd be like nobody asked any real questions in that would be my answer. They're trying to keep me on brand here. Boston, of for people who plan on just continuing to use the AI. Why does it help you at all? If they get the prescription? Like, here's the this is this question because this is somebody trying to steal they want to give back still.

Howard Look 55:16
Oh, that's super helpful. Does it help tide pool if someone gets a prescription but then continues to use DIY loop? I can't think of an immediate reason why that would be helpful. But let me let me go think about that. I couldn't either.

Scott Benner 55:29
But I just I thought it was another example of just people wanting to do something.

Howard Look 55:33
Here's a thought and this is, you know, one of the reasons again, why I think what we're doing is valuable. We have heard and you know, this is anecdotal, but I think there are some folks I know in Europe, for example, that have studied acceptance of DIY systems in endo clinics. We've heard anecdotally that there are some providers that are really uncomfortable with their patients using DIY systems. So one of the big benefits, I think of tide Palooza, being an FDA cleared product and being available in the App Store, is that for those people that have providers that are a little queasy about their patients beyond the DIY systems, this is a great alternative. So not only does it give the person living with diabetes, who may not want to build their own system, an alternative option that they can look at and go, Oh, great, that's FDA cleared, it also gives their provider a little more confidence because their provider can say, Okay, I'm no longer scared that you as my patient are using a system that I don't know anything about.

Scott Benner 56:40
Do you think that's mostly everybody just, I'm just gonna say what I was gonna say that's just as covering, right? Because like I've, I've seen doctors people mentioned and they go, no, don't you do that I've heard, I've heard people be told, if you do that, I'm dropping you as a patient. And I've seen people, doctors go, Cool, let's do it. And I've seen the one where the doctor pretends they don't know what you're saying they almost lost all their way through it when you tell them and then they just act like you never said it and keep going. I've seen all three of those things happen. So this is going to take any kind of that uncomfortableness for those types for those physicians, and allow them to say, hey, we've got a good, we've got a good thing for you to try here. It's FDA approved, they can get behind it. So then the next question comes, is who's going to help? But this is something I think about all the time? Are you guys gonna get involved with the training? Because we always say like, oh, the doctors will take care of it. But that's not really going to happen. You don't I mean, like, they're not gonna understand loop the way you do, or the way I do, I could, I could grab somebody's loop app right now who I don't even know and probably get it working in a day, you know, like and make adjustments to their stuff. But that's unfair to ask the doctors to do. And, you know, especially when things don't, what do I want to say, I was really good at using insulin. And then I got to watch Nightscout. And then I got way better at it. Like watching the algorithm do what it was, it was like a was like a Master's class in how insulin works. And I already had a good idea about it. But just to watch it, take basil away, and then give a little back and give some extra and then take it away again, I was like, Oh, my God, this is just a dance that never stops, really? Because I learned a lot that the doctors aren't going to get to see that, or are you going to figure out a way to train them? Or how does that gonna go?

Howard Look 58:29
Yeah, so let me unpack that question. There's a lot in there, how's training going to happen? How will doctors get access to the data? So we developed training both for the person living with diabetes, also caregivers, so part of our human factors, testing was testing what are called dyads. So parent and child pairings. So training that is targeted at parents and including training that is targeted at adolescents who are on the transition to self managed care. So we created a whole curriculum that is actually both built into the application, but also exists in traditional user manual form, and then take all of that we recreated healthcare provider training. So the healthcare providing Provider Training exists in traditional forms, we will also have lots of content on our website in terms of knowledge base, and support articles. And we will keep doing something we've been doing for years, which is online, both live and recorded webinars to teach people how to use it. At the end of the day, we feel really strongly that people need to be able to learn how to use it on their own their healthcare provider will be there. But we can't be dependent on the health care provider to provide training to the person living with diabetes that has to be self evident. And the way we do that is by building training right into the app, you have to go through an entire onboarding experience before you can start delivering insulin, and then there's help within the app at all times. If you have questions about something, how something works, you can actually get help from right within the app. So one of the things I'm really excited about is we heard both during the Human Factors testing, and you can also hear over and over from people in the DIY community is how elegant and simple using loop is. And I think that really helps make learning all that material much easier. Because you can look at it. Look at the homescreen of loop and just see, Aha, I see what my glucose is doing. I see what the insulin is doing. I see what the carbohydrates are doing. That all makes good sense to me. Yeah.

Scott Benner 1:00:44
Well, and then I did a thing I talked about earlier, I just did Nightscout as if everybody understands that. So that's an app I use to to, like, I can see my daughter's blood sugar and what her loop is doing. Are you guys going to have like a follow app for for a caregiver? Yeah.

Howard Look 1:01:00
Super, super, super question. And sorry, I forgot to touch on that. So popping back a level, I pull started life as a data management platform, and we are still a data management platform. So tide pool lube will automatically up to upload data to tide pool. So people will be able to see their data in tide pool for web in tide pool mobile. And yes, we will have a follower experience. That'll enable loved ones to be able to see your glucose and insulin data remotely.

Scott Benner 1:01:34
Yeah, I was gonna say you're gonna be like GitHub, but like, right. But nobody will understand that. So I'm not gonna say it. And let me always be clear, I'm always only about 90% sure of any of the things I'm saying around lupus, right, because I just am so not technically adept about about that side of it. But also, I think that gives me a lot of comfort, because, and for other people, because with a little bit of help, I was able to figure out a thing that my brain doesn't naturally do. Like when you were talking about like screens that explain things. I picturing myself sitting there going next, next, next and not reading because by because I'm broken. And and that's not a thing I learned by doing. But it's very comforting to think that it's going to be out there for people like this. And that, that that especially that that that idea that I'm I don't mean it this way. But the idea that I'm doing something wrong, or that it's not like that somebody hasn't said is okay, like just to take that weight off of people saying this is the FDA said this is okay. Like I think that's going to be really helpful for a lot of people and to help them move forward. Because I haven't said it to you yet. But I think algorithms are 1,000,000% the future and the present of how people manage can be managing their their insulin, it's just, it's just such a leap above trying to do it yourself.

Howard Look 1:02:58
I experienced Totally agree. I you know, obviously what we both want for our daughters is a cure for type one. Hopefully, research will pan out and that will happen in their lifetime between now and then I completely agree that the next best thing in terms of both achieving great outcomes. But even more importantly, for me, reducing the burden of living with type one is to have automated insulin delivery. So I'm very excited to that we're participating in that. And

Scott Benner 1:03:27
a tiny little thing that I always throw in, I think Aaron Kowalski sent it to me once it's just even if we could just make the cannula material better. So there's not, you know, so that sites work more the way you expect them to consistently would be such a big deal to I didn't ask a secondary question about the weather. You have a follow up. People also want to know if you can Bolus from that app like will a parent be able to Bolus from their own phone?

Howard Look 1:03:52
Yeah, so the version of tide pool loop that was just cleared does not have that functionality. We know that is something that people really love, and it's something that we will absolutely consider for future versions. I will tell you that. One of the things we spent a lot of time with the FDA on is cybersecurity. And once you open that up, it creates a mechanism by which someone could remotely deliver insulin, which definitely should give everyone pause. That's I think it can be done safely. But it's going to take a lot of work to demonstrate how it can happen safely.

Scott Benner 1:04:30
Do you have um, were you able to get Apple Watch? Can people use your bill? Absolutely.

Howard Look 1:04:36
Yeah, type of loop absolutely has, as part of its feature set the ability to use an Apple Watch and to discreetly manage your diabetes right from your watch. Okay.

Scott Benner 1:04:47
What are some of the well my first question is Where can people go to see a list of the functionality for assuming you have a website where I can see that?

Howard Look 1:04:57
Absolutely, we'd encourage everyone to go to tide pool.org/loop And you can read all about the tide pool loop and also sign up for our mailing list to get updates on things that are coming down the road.

Scott Benner 1:05:11
Do you in your mind, you don't have to share them with me. But is there a list of things like you said, like you, you're going to be able to add things to the to the app as you go. Like, I mean, the one that occurs to me is like auto Bolus, right? Adjustments adjustments through auto Bolus instead of through, like Temp Basal is that like one of the things you're looking at now?

Howard Look 1:05:30
That is absolutely something we're looking at right now, I would say that I talked about overrides. That's clearly the next big suite of functionality that we need to consider for the next version of tide pool loop. And we're working on that right now. And then the biggest thing, quite honestly, that we get asked about, and that we think is important is Android support. So this version of tide pull loop works on an iPhone, we chose that because that's what DIY loop did. So we were starting from an incredible foundation of an iPhone, an Apple Watch app written for iOS. But clearly, if we want to fulfill our mission, as a nonprofit, our goal is to have the broadest possible impact and to enable equitable access to the best possible diabetes technology. And in order to do that, we've got to get bloop onto Android. So that's really important to us as well. I can't say when that will be done. And when that will be ready. I just want everybody to know that it is really important to us. And that's part of our mission. As a nonprofit,

Scott Benner 1:06:35
you just reminded me by saying you're a nonprofit that I have a question here. I think what the person is really asking me is, how do you make money? Like, like, is it like, like, at first I thought, Oh, it was an angel investor that got you started? And then But then how does like you've got a big group of people working for you like, how does that all work?

Howard Look 1:06:55
Yeah, I really appreciate the questions. So over time, our goal is to be a self sustaining nonprofit. And we are generating revenue. Now. We get money from the device makers that we partner with, they pay us to integrate their devices into type of loop. And then over time, they will pay us because the more people that use type of loop with their devices, the more devices they will sell. So they will give us a share of that revenue as well. We also generate revenue through our data management platform, we always have had and always will have a free version of the data management platform. But last summer, we launched what we call tide pool plus, which is an enterprise version of tide pool for web that's very specifically geared towards the needs of enterprise healthcare provider clinics. So it provides functionality, for example, that allows it to integrate with their single sign on mechanism. It has functionality that allows them to manage their entire population of diabetes patients. So there's a dashboard where you can, for example, say, show me all my pregnant moms living with type one, or show me all my new diagnosis patients, or show me all my patients that are struggling with hypoglycemia, so that I can provide better proactive care, okay. And it also lets you do integration with electronic health record systems, for example. So we generate revenue through tide pool plus, which is our enterprise version of tide pool, we generate revenue through tide pool loop, doing both development work, and then ultimately ongoing. And then the final bit is we get incredible support. And I've got to give a shout out to JDRF to the Helmsley Charitable Trust in particular, that have really supported us tremendously over the years, and we would not be here without their support. And there are literally 1000s of individual donors that have reached out. And we get donations everywhere from $1, to $5, to $100, to 10,000, and sometimes hundreds of 1000s of dollars. And every one of those donors makes a difference to us. And it helps us do our work and continue on our mission. So for folks who are listening, who want to help support us, thank you in advance if you have support us, and if you'd like to support us, you can go to type o.org/donate

Scott Benner 1:09:25
That's really wonderful. It's it's actually it's, it's encouraging it really is to just to know that it's that the people don't just say, Oh, that would be nice, but I'm willing to do a thing and I mean, I listen, it's not it's not money, but I have that feeling a little bit like I'm trying to spread the word about algorithms because I just I just know how it will help people. And that's great. It just I think any I think anywhere where people can do something that fits in with their thing is really valuable.

Howard Look 1:09:55
I thought of one other way we make revenue and I'm remiss and talk combat. So I want to make sure your listeners know, one of the things we do is when you make a type pull account, we asked you, would you like to donate your data for research and product development? And 10s of 1000s I think we were well over 30,000 or 40,000. People have checked that box and said, Yes, I'd like to donate my data. That's a pretty amazing thing, because it lets us bundle up those datasets. We call this the tide pool Big Data donation project and create these massive longitudinal datasets, we anonymize them, we strip out all identifying information, but we bundled the datasets together. And we can give them away for free, which we do often to nonprofit academic researchers. But we can also license those datasets to for profit companies, whether they're doing pharmaceutical development, or diabetes, device development. And that's another way that we make revenue. One of the things we do as part of that program, because we're a nonprofit is we want to give back a little to the other diabetes nonprofits that are working so hard to make things better for everyone. So we let you choose which diabetes nonprofit, you want us to share that with that revenue with and we share 10% of the revenue that we get through the type of Big Data donation project back with other diabetes, nonprofits, nonprofits, like children with diabetes, JDRF diabetes sisters, beyond type one, there's a whole list there that people can choose from.

Scott Benner 1:11:34
That's amazing. Thank you. I'm glad I asked that question I almost skipped over. Now I'm like, well, that worked out tide pool just in America or other places.

Howard Look 1:11:45
So the company is based in the US, but we do have international employees. We're a completely remote organization. I'm sitting here in Mountain View, California. Syrah is in Southern California, we've got people all over the US and in Europe. And over the course of time, we've had people in New Zealand and Australia and lots of other places Canada. In terms of use, we officially support our use in the United States. For our type of data management platform. We know we've got tons of users internationally, we are GDPR compliant, which is the data privacy regulation in the European Union. We don't specifically claim that we meet any locales, data privacy requirements, there are some pretty funky ones. Sometimes countries will say, Well, your servers have to be in our country. We don't do that yet. But we also don't shut people off. If we know that they're in another country. We know we've got a ton of people in Israel, for example, there's a ton of people in Northern Europe. And so our goal over time is to much more officially support other languages and other locales. Right now, we're largely US centric, but we definitely have a pretty healthy US population outside the US,

Scott Benner 1:13:05
for people who are familiar with lube and probably familiar with the app that you started with. Has there been anything like we talked about some things you've put into it? Was there anything taken out of it at the behest of the FDA? Or did it pretty much stay the way it was?

Howard Look 1:13:21
It is largely the way it was, I think the constraints on settings were the biggest thing, most notably target range being constrained to 87 to 180. And that wasn't necessarily something the FDA asked us to do. That was something that we knew we needed to do, in order to support support our submission with the clinical data we had. But by and large the features and functionality in tide pole loop map to the features and functionality in DIY loop. It's the DIY loop of mid 2020, however, so we have a little bit of work to do to catch up. But we'll be able to do that much more quickly. Now that we have clearance.

Scott Benner 1:14:00
Did they ask you to add nags? Like after a new site change? Like, don't forget to check your blood sugar like an hour after you made the site change? Did they ask you to put any stuff like that in?

Howard Look 1:14:11
They did not ask us to do anything like that. We did spend a lot of time with them talking through how alerts and alarms will work. And I want to give the agency a lot of credit on this. They really understand that there are just times when you don't want your phone to make noise. If you're getting married, you're in a wedding chapel, you're in a choir singing, you're in a recording studio. You know, it's terrible to think about but if you're in a lockdown situation in a school like there are just times when you don't want your app making noise and the FDA and tide pool iterated on a design for alerts and alarms that makes it possible to provide safe alerts and alarms arms that let you know when there's something you need to pay attention to. But they that also lets you mute them for significant periods of time so that you can accommodate those situations.

Scott Benner 1:15:12
Here's the question. Does this make my phone a medical device? Does that not have to buy me an iPhone knows what I'm asking?

Howard Look 1:15:23
Your iPhone is still an iPhone. Your iPhone is being used as a platform for software as a medical device. I don't think I can answer the question if if it actually turns I mean, the iPhone is not submitted to the FDA as a medical device if that's

Scott Benner 1:15:41
your question, right. But I can't run the app without it. That's right. Oh, I'm totally calling that No, I see. What's that? Yeah. Okay, I'm giving this a shot.

Howard Look 1:15:49
I'm gonna I'm just gonna go out on a limb and say your insurance company is not gonna buy

Scott Benner 1:15:53
Oh, no, they're gonna turn me down. Probably really disappointed. But I'm still gonna ask. Let us know how that goes. Oh, sure. It'll go like this. Hello, hello. I think they hung up. Well, I'm sorry, I lost my space here for a second. Oh, profile switching. People are wondering if you'd be able to like, you know, by using a menstruating woman as an example, like, you know, could I do pre menstrual during the event? I never know what to call it like that kind of stuff. Like, do you have that?

Howard Look 1:16:29
Sorry, I just lost a deal with it later. The work that we are working on now that will add override similar to what you see in DIY loop, I think it's the way that that will be accommodated. So you'll be able to have different forms of overrides for different parts of your menstrual cycle. Okay, but that does not exist in the type of loop that was cleared this week.

Scott Benner 1:16:59
Gotcha. I'm skipping that one. Hold on a second. I did that one. I'm doing good here. Howard. You are actually you're doing really well. I'm basically just reading.

Howard Look 1:17:10
These are great questions. Your your listeners really know what they're listening to and know what they're talking about.

Scott Benner 1:17:16
I agree with that. Can you be a salesman for a second? And answers to answer this question, why do I want this and I don't want control IQ or I don't want the Medtronic one or I don't want on the power? Like why do I want yours?

Howard Look 1:17:30
You know, I'm gonna politely declined to answer that. I think it's a great thing that there are different choices in the world. I think control IQ is going to be the right choice for a lot of people, I think Omni pod five is going to be the right choice for a lot of people. And I think for a lot of people type loop will be the right choice. What I want to see is more interoperability. And more choice, I want people to be able to say that's the right CGM. For me, that's the right pump for me. And this is the right user experience and algorithm for me, I agree with

Scott Benner 1:17:59
you, I was just asking the question, but But I, I 1,000,000% agree with you. I don't care. Honestly, no one should care. One company's not going to get all the business, there's somebody's always going to want to be to bliss or not want to be to bliss or want to use this, you know, want to use a Dexcom or rather use a libre or something. I mean, somebody eventually is going to want to use a Medtronic sensor. Sorry. And, you know, like, like, so when that happens, you don't want to just be like, Oh, now I have to use this thing. And at some point, all those companies have to see that there. I talked to too many people who are like, Well, I have a as an example, I have a Medtronic pump, but I want to use a Dexcom. And so they end up leaving Medtronic because of that. And I'm sure that happens in all different directions with all these companies, you would think that the idea of interoperability would be you think it would be paramount to them. Anyway, that's how I say it. But I'm not going to make the answer that but thank you. Is there any?

Howard Look 1:18:58
I'll answer it. I totally agree. I think that choice is a good thing. I think interoperability is a good thing. And I think the thing that interoperability and choice also lead to is greater access. At the end of the day, what I really want to see happen is everybody, everybody who is living with diabetes to get access to the right technology that works for them. And we just have a lot of work to do. And this is you know, way above my paygrade but as I'm sure your listeners know, the reimbursement system, the health care system, the way access to technology happens today is not fair and equitable. And we are a long way away from the new diagnosis kid with type one who's got a single parent on public assistance assurance, public assistance, insurance, getting access to the best path possible technology. And our small part in that is let's make it easier. Let's make It easier with an interoperable system so that someone can actually get access to the best possible care. Yeah, there's lots more to be done. But that's what I want to see happen.

Scott Benner 1:20:10
Amen. That's well said. Alright, Howard, let me ask you this. Is there anything? I didn't ask you something I should have? Wow.

Howard Look 1:20:17
We covered a lot of ground, Scott. I can't think of anything off the top of my head Syrah. Is there anything that you can think of in your head?

Scott Benner 1:20:28
I know that I was. The one thing I never do understand is that the difference between like, cleared by the FDA and approved by the FDA? Oh, yeah, that's a thing.

Howard Look 1:20:39
Absolutely. They are two different things. Here's the 62nd the digestive what that means. The FDA thinks about medical devices and products in risk levels, risk stratification. There are class one, class two and class three devices. class three is the riskiest and class one is the least risky. So tongue depressors, and band aids and over the counter medicines and things that don't carry a lot of risk are class one. Historically speaking, anything that is new is automatically designated class three because it carries unknown risk. What the FDA did was they created these pathways, and they're called de novo pathways, and de novo means we are going to consider this from new it means from the new and Latin as a class two device. So these interoperability pathways, the AGC, I, CGM and Ace pump designations that I talked about earlier, are all class two devices. When you submit a class three device, you have to go through what's called the PMA process premarket authorization, so are premarket approval. And so that's when you get FDA approved is when you have a class three device with a class two device, you're getting what's known as 510, take 510 K clearance. And what that's saying is, my device is just like this other device that is the same other class two device, and so you get FDA cleared. That's what we just did, we submitted a 510 K application, and we got clearance, or tied pollute our predicate device was control IQ. So part of our submission was going feature by feature capability by capability and saying, here's why our device is what's known as substantially equivalent to the control IQ. What's cool about us getting clearance now as a class two device is we can become the predicate device, or all future devices that want to do similar things to what we've done. Okay. We're pretty proud of that.

Scott Benner 1:22:47
Wow, you should be That's wonderful. This whole thing is amazing. You know, I have to tell you, just to give people the idea of about a span of time, I looked while you were talking, Your Honor, you brought up Dana and Scott, the husband and wife who back when open APs and they were talking about that. They were on my podcast on episode 63 and 64, concurrently. And my best guess is that you're going to be episode like 838 or something like that. Whoa. And when they were amazing, when they were talking back then it was like, I was gobsmacked. I was like, this lady says that, like you don't even know I'm like, she's saying that there's a thing on a thing. And she's saying Raspberry Pi. And I'm like, This sounds like stuff I don't understand. And then she's talking about how great her stuff is, and how our outcomes are. And then I didn't think of it for years. Like it just it felt to me like, like back then it just felt to me like it was three people who were doing this thing, and I happen to talk to a couple of them to see that. I don't know that. I mean, how many years later that is that was the beginning of 2016 that that happened? Well,

Howard Look 1:23:51
if I can pile on that for a second. I think Dana and Scott St. Louis and Scott Lee brand and it may be pronounced Lybrand, I apologies apologies, Scott, if I've got wrong. And before them, John caustic, who did the work to reverse engineer the Dexcom G for Ben West who did the work to reverse engineer the Medtronic insulin pump. And there's a whole bunch of other folks who worked on Nightscout. And I'll miss a bunch of names if I even try, but they all know who they are like those. Everyone who did all of that early work, laid this incredible foundation. And I often say that at tide pool, we're standing on the shoulders of giants. And it's very true. We could not have done this without the work of all the people I just mentioned without the work of Nate rock left, who wrote the original version of loop. And to me it is just incredible testament to how this community wants to make a difference. Like I said earlier, every single person is just saying hey, I think there's a better way to do it, I'm gonna go do it, I'm going to do it, I'm going to use it on myself, I'm going to share my work, I'm going to take contributions that other people make and make it even better. And everybody did that. And I hope in our little way tide pool is doing that too. We're sharing everything we're doing. openly, all of our code is out there, we're actually publishing all of our regulatory interactions openly because we want to help other innovators and entrepreneurs with their interactions with the FDA. And, you know, at the end of the day, it takes a village to help deal with this crappy disease. So we're trying to do the best we can. I

Scott Benner 1:25:38
can't thank you enough for having the idea and bringing it forward like this. And for all the people like us, I can't name them the way you can, but I'm so grateful for all of them. My daughter's life is, is monument monumentally different, like just different than it would have been otherwise? And I'm honestly, I'm not kidding you. I was I was gonna kill myself with the not sleeping thing. You know, the first the first few years I taught my talk myself into believing I was one of those people who didn't need sleep. Like you know, we all tell ourselves that at one point, like, I'll be okay. But man six, seven years into it, and I was I was hanging on by a, by a shoestring you know, and I hear it's a big deal for me. So and yeah, a lot of same people. Same.

Howard Look 1:26:20
My daughter has benefited my wife and I have benefited and 1000s of other people too.

Scott Benner 1:26:24
Okay, tide. pool.org. Right. That's it. All right.

Howard Look 1:26:28
I pulled out org slash loop, sign up, and we'll keep you updated. Howard, thank

Scott Benner 1:26:31
you so much.

Howard Look 1:26:32
I pray thanks for having me on Scott. I really appreciate it, I do too.

Scott Benner 1:26:41
First, I'd like to thank Howard for coming on the show and talking to me today about tide pool loop. And of course, I also want to thank the Contour Next One blood glucose meter, contour next.com forward slash juice box head over there today. See the meter that my daughter uses. It's incredibly accurate. It's one of the reasons I love it the most. Also want to thank us Med and remind you to go to us med.com forward slash juice box to get your free benefits check. Or you can call 888-721-1514. Last reminder, juicebox podcast.com. type one diabetes is our private Facebook group in the feature tab, a list of algorithm based episodes where you can find them at the top of juicebox podcast.com. They're in your episode guides. That's where you'll find the episode guides, or they're in your podcast players. Just use a search like Juicebox Podcast and then you got to find out the names of the episodes. There's like Fox and the loop house and the loop de loop. And you'll see there's a bunch of in there, go find the list. I'll I'll do that. You know what I'm in a good mood. I'll put a list of the episode numbers in the show notes of your podcast player. So in the show notes of the audio app you're listening in right now. Besides links to all the sponsors. I'll put the episode numbers of all of the algorithm based episodes. That sounds good. Alright. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.