#177 Ella Builds Bridges
Scott Benner
Cry a river, build a bridge...
Ella lives with type 1 diabetes and so many other medical conditions that I can't list them all. Her spirit and determination is the stuff of legends. This is her story....
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello and welcome to Episode 177 of the Juicebox Podcast. Today's show is sponsored by Omni pod, the tubeless insulin pump that Arden has been wearing for a decade. And by Dexcom, makers of the G six continuous glucose monitor now FDA permitted for zero finger sticks.
I'm at a bit of a loss for how to describe today's episode because it is incredibly uplifting, but at the same time, it could be difficult to listen to at times. Today I speak with Ella. She's a young person in her 20s, who has type one diabetes, but who also has a host of other medical conditions. As you listen to Ella describe her day and what she needs to do to stay healthy and safe. It's going to be it's going to be a little overwhelming for you. But I think Ella's life offers a perspective that would be difficult for many of us to gain. So I hope you listen. She's really a rather remarkable person. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making changes to your medical plan.
Ella 1:25
My name is Ella, I'm 23 years old. I've had Type One Diabetes since September 26 1997. And I have some other complex health conditions. But aside from those, I have a lot of hobbies that I love to do. And one of them is volunteering. I love volunteering at any opportunity I get either the Red Cross at a gay or F anything I can do, or just helping a friend in need out. That's what I love to do. And I'd love for it. I live for helping other people. And I also love rock climbing. And before I got sick, I love swimming. Well, I
Scott Benner 2:16
definitely get the sense from you online that you're a person who likes to help other people.
Unknown Speaker 2:21
Yeah, I
Scott Benner 2:21
don't understand climbing up rocks. That seems insane. But I'm happy for you if you love it. And I'm going to ask you later why you don't love swimming as much since you have been diagnosed. But first, I guess Let me start by saying this. I don't we don't know each other You and I, I'm aware of you. I'm aware of you through Facebook. That's how I'm aware of who you are. Right? Yeah, what I would say is that, you know, social media is really interesting. You know, you hear people say all the time, like, you only see the best of people on Facebook. Right? Right, they take 17 pictures of themselves before they get the exact right angle and, and that's the one you see. And you know, if their kid, their kid does something in a sport, they don't show you the six things, they mess up just the one thing they did that was really good. And, and, to me, that's just a bigger idea that you know, we don't spend, we don't, we don't share every split second of our lives, we're just sharing the stuff we think other people might be interested in, or we're interested in other people knowing about. Having said that, from my perspective, considering that if you posted 100 times a month, and I don't know how many times you do that, I would probably only see it a handful of times anyway, because of the way the Facebook works and everything. I have a very slim idea of who you are from this. But it does seem to me that you are in and out of different situations that are probably not optimal health wise, like I see you in the hospital a lot. Or you're in need of help or things like that. And so we're gonna really kind of drill down and understand why that is, and and why you're so open about sharing about it and stuff like that. So it's really it's excellent. So let's let's start slow. You were diagnosed, I did some fast math while you were talking. Were you 11 years old.
Ella 4:06
I was 926 97. So I was two years old.
Scott Benner 4:11
My math is terrible. So all right. I might have heard 2007 which would have made more sense with my answer. Anyway.
Unknown Speaker 4:21
Sorry.
Scott Benner 4:22
No, don't be sorry. It's my fault. I'm terrible. So two years old, which is how old my daughter was when she was diagnosed. Wow, where were you living? It's time do you have you? Do you live in America? Wow. And have you ever lived overseas? Okay, so where were you when you were diagnosed?
Unknown Speaker 4:40
Um
Ella 4:44
I was so little. It was like right after my parents got divorced. Okay, so I'm not sure
Scott Benner 4:53
I understand that. Who you living with at the time? Is it your mom, your dad are you splitting time
Unknown Speaker 4:58
um,
Ella 5:00
We I live, where we live, it's my mom and my grandma. My mom had to work all the time. So my grandma would drive us call appointments and kind of raise us. And my mom would, you know, do it, she could
Scott Benner 5:19
sit down. So was your grandmother kind of your primary caregiver for diabetes in their life? She was.
Ella 5:24
My grandma was my grandma. But was the role of a full time mom for me. Okay. I lost her three days before my 14th birthday before your 14th birthday.
Scott Benner 5:38
Yeah. Wow. Okay, so now, so she's your primary, like, you know, caregiver for diabetes and in life in general. So you like losing your mom, I would imagine. And were you self sufficient with your diabetes at 14 or no did that really kind of throw things into,
Ella 5:55
I had to learn everything by the time I was seven. So at seven years old, I started checking my blood sugar about myself when I was like three or four. And I started being able to do my own injections at age seven, actually, after diabetes camp. So after diabetes camp, the thing about Canvas, what's so amazing, is you're having fun, but you're learning at the same time. And so kids will, you know, go to camp on a Sunday. And by that Friday, I mean, you have someone they're doing their own injections, they're changing their own pump site, they're able to calculate their dose. So you know, one or the other, all three, or whatever is on but that's the beautiful thing about camp and camp taught me not just how to manage my diabetes, it also gave me every skill I really was going to need in life, from being able to overcome any challenge that lay before you and to working as a team to just know that you're not alone. And that even if you feel like you're the only person in the world who feels a certain way, chances are you're not
Scott Benner 7:24
that's a real confidence that you it's hard to kind of gain on your own sometimes. And it's it's so much easier to get it from somebody else who already kind of knows what you're going through and is able to kind of mirror it back to you. So, yeah, okay, so alright, so two years old. 20 some years ago, obviously, not a lot of technology going on probably at the time, and yet a meter, I'm guessing ish.
Unknown Speaker 7:47
Oh, my God.
Ella 7:49
Oh, sorry. No, no, no, no, was it a crazy meter did it was it though, it was the accucheck. I can't remember what it looks like. But I don't know, it's called but it took 45 seconds. For a meter results, 45 seconds. And you had to have this little like, kit, hard thing to put in the meter, because they didn't have the codes that you would scroll to for those of anyone who's newly diagnosed or newer to type one. Back in the day before they had all these meters that were that
Scott Benner 8:35
that service, you know, like coded to the strip's right, like,
Ella 8:38
yeah, like you had to put in like code 25. For one touch, we had to put in code 16 for freestyle. And back in that day, you couldn't even just scroll up or down to the code, you had to actually take the soul, the soul chip card, and put it in the meter. And you could only use those strips with that sim chip card thing. And I was on, I'm allergic to a lot of insulin. So I was on. I honestly don't know what the long acting was, um, but I was on an evil log pretty quickly, because I did not respond well to regular. Um, and then in 2000, I remember in kindergarten, that was like the big thing and I we were we went on lantis. And that was so different, because we could eat whenever we wanted. We just had to take take a shot, but it did mean a lot more hot. So I was on that until I was 13. And then on January 29 2008, I actually began pumping with the Omni pod.
Scott Benner 9:54
Okay, so now, yeah, that's great. Well, first of all, I what I heard was how exciting it was in kindergarten to be on lantis, which is not. It's not. It's not everybody's kindergarten excitement story, that's for sure. But it did open up your life. So that's pretty cool. So, okay, so how did you find? Like those first years living with type one? Do you? Did you feel burdened by it? Or was it just kind of how things were for you? How did you kind of react to it?
Unknown Speaker 10:24
Um,
Ella 10:27
I don't really know cuz I was too. But as you got older, as I got older, I, I've just always been really in tune with my body. And I've always have had an advanced, like, extreme amount of research. since a young age, like I was that kid that would come home, get off the ball, get on the computer and start doing research.
Scott Benner 10:59
Just trying to feel not just trying to figure out things that would help you or things that would benefit your health or like that kind of just trying to understand the whole thing in a greater detail.
Ella 11:09
I wanted to be a nurse from like, I just knew, like my whole life, I just knew that I was destined to be a nurse, my grandma was a nurse, and all my grandfather was a quadriplegic. So growing up, I often would have to help a care for my grandpa, and I loved it. Um, so when I was little, I would like to do research, not just on diabetes products, but I also do research on its medical conditions, like leukemias, like the cancers and some rare chromosomal design. So
Scott Benner 11:50
you were just trying to figure out like, medical stuff in general, you're just really interested by it all. I just wanted to learn. That's cool. That's excellent. So all right. Now, you're not a nurse now, I would imagine, right? Yeah. So tell me what happened. So what was your first complication with diabetes?
Ella 12:11
So that's an interesting one, my agencies were, they have been in IE, six, like six point size 7.7 range for the past 10 plus years. When I was little, and I was on injections. I had ainley, eight and a couple nine. But those are few and far between. And a lot of that reason was not there just impossible to meet my medical needs. I know a lot of people are pretty good with MTI. But the pump made a huge difference. And that it's actually been a life changing for me, and I would never go back. I was getting ready for Rn school. It was August 2014. And it was going to be my second year of college. And I went from never having a hospital admit, really never go into the hospital. Not just like no er trips, no ad met nothing. until suddenly on August 11 2014. My blood sugar was really high and I had like small pea ketones, but it didn't matter how much I was drinking. I kept throwing up and throwing up and throwing up. We went to the hospital at that point. Because I was scared I was gonna go into DK and and that at that point, that was the I was admitted that night. I was just the first of many.
Scott Benner 14:00
I was just standing last night with former Major League Baseball player Sam fold. Sam's had Type One Diabetes since he was 10 years old. One of the first things he did when he saw me was yank up his shirt show me his new Dexcom gs six continuous glucose monitor. He said it It changed his life. But this ad is not about the Dexcom it's about beyond the pod. Because I said to Sam, what's next? You're gonna get a pump? And he said, Yeah, I think so. And I told Sam the same exact thing I'm gonna tell you right now. You should look into it on the pod. I told Sam that Arden has been wearing an omni pod for a decade since she was four years old. She just turned 14 the other day. She's never once felt constricted with tubing or held back from swimming or showering. It's absolutely spectacular. Each and every day we use the functions on the on the pod tubeless insulin pump to make adjustments to ardens bazel rates or boluses it is absolutely 100% the key the focus, the CI and the now of how we have kept ardens 8172 5.6 and 6.24 now over four years, that's what I told Sam fold. That's what I'm telling you go to my Omni pod.com Ford slash juice box or click on the links in your show notes, or Juicebox podcast.com to get a free no obligation demo pod sent to you directly at your home. That's right on the pod. We'll send you a pod that you can try on where see feel touch, love. caress even I don't know what you're gonna do with it once you get it there. But you'll be able to try it, wear it and see what you think. And then if you want to move forward on the pod makes the entire process super simple. Miami pod.com forward slash juicebox with the links in your show notes or Juicebox podcast.com Hey on the pod I bet you didn't think you were gonna get a small dog snoring behind your ad. Huh? You guys hear Basal Today he is really starting up a store. Okay, let's get back to Ella hear about her first time going to the hospital and the many visits that followed
Ella 15:59
was just the first column of many. I was diagnosed and began my journey with Gasser freezes on August 11 2014.
Scott Benner 16:12
So you're going along for you know, 18 years maybe right in that range, like like just cruising along, even when you're a one sees weren't where you wanted them with MDI. They weren't terrible. They were still respectable a one sees you on a pump. Yeah, down, everything looks like it's going well, you're heading into college. And suddenly this happens. Is it fair to say that it's an is it? Has it been a, like an absolute, like, kind of like, left turn? Like did your life completely change at that point? Yeah, they did. Yeah. And so I guess so like, let's talk first about, you know, not about gastroparesis. So basically, I, we just did an episode recently with someone who else who spin talk, who was talking about their complications, the call. And so there's, um, it's nerve damage, but through your digestive system, is that yeah, that's the beginning of the idea. Right. But then tell me what how does that affect things with diabetes?
Ella 17:09
Yeah, that's what I really wanted to share. Yeah, about. So and just this thing, you know, I have not been declared whether it's complications, or it's a secondary condition. And I can get into that after I touch up on the Yes, or phrases and how it affects my diabetes. Okay, so I would describe them as Gasser versus as having the stomach flu every day for the rest of your life. So I go through periods of time where I can't hold anything down. And I end up having to be on IV nutrition, or bonds. And I actually have a central line. So I have a port in my left side of my chest, and I have a needle that goes in there every week. And that just it's called accessing my port. So in addition to my insulin pump, site change, and my Dexcom change, I have to do my IV fork needle once a week. And I will say this, iPhone diabetes was completely manageable. And I could live very freely with it. When you add guests or freezes to it.
Unknown Speaker 18:42
It's
Ella 18:44
honestly, it's a night it at first, it's a nightmare until you can adapt. So, for example, when my blood sugar goes high, I can't just drink a bunch of water and take a shot, do a site change for a high, that means I got to do a blood sugar check. I got to do a blood ketone check. I have to get insulin on board and I have to get a bag of IV fluids on and go wide open meaning like the staff, it gets into me as fast as it can.
Scott Benner 19:21
Why does all Why do all those extra things become necessary? Why Why doesn't just insulin do it at that point.
Ella 19:29
I'm prone to dehydration. So I have to wear my IV pump. Almost 24 seven, because I'm on continuous IV fluids. But sorry about
Unknown Speaker 19:46
clearing my throat you Sorry,
Unknown Speaker 19:47
I find that
Unknown Speaker 19:52
I
Ella 19:54
it really just treat with insulin. Now. This isn't every high But if I'm having a, you know, 250 plus and I'm, or if I'm 200. And I'm just rising really quickly, I'd like to actually, I really like, do. I really like to be bold with insulin and fluids, because a lot of times I like to be free, like, proactive, instead of reactive, right? Because it just makes everything so much easier. And with the dex comm, I'm able to see where I'm trending. And that is super helpful, because that actually changed to the changes, of course, the treatment plan. But as far as that IV fluids, um, and the reason I have to be so aggressive with those, especially my blood sugar's going high, is because I'm prone to ek, and metabolic acidosis. And so, I duration is a huge thing.
Scott Benner 21:13
Okay. And so, let me jump in for a second because I want to make sure I don't get lost, because I think I'm keeping up. So she's, no, no, no, you're doing good. You really are. So you have a constant IV available to like you can when you hang a bag, you can just do it. It's not like you have to get a needle then at the same time. Is that right?
Ella 21:33
Right. I just can't get once a week.
Scott Benner 21:35
Okay, so so when you you're cocky, when you're bold when you're when you're aggressive. When your blood sugar starts jumping like that, you need to get insulin and you got to make sure that you're hydrated you to check your ketones, because when it goes bad, it goes bad all at once. And really drastically. And yeah, and you don't know. Yeah. And when you don't know which one of those elevated blood sugars is going to lead to that which one is just going to come down and be okay again. Yeah, okay. All right. Okay, I think I understand that part. Now. So how about how does that how did the highs happen? Are they because Is it because of the difficulty understanding when your body is actually going to digest what you've eaten? And whether or not like because I'm assuming, I'm assuming like, your your variables are crazy, right? Like you could eat diets and get sick and and then you wouldn't have the food in your system, or it could go in and not process for a really long time. And then if you put the insulin right, then the insulin might be way Miss timed with when the when your body actually starts processing the food? How do ya how do you make those decisions? How do you make any of those decisions.
Unknown Speaker 22:46
Uh,
Ella 22:47
I don't eat much. Um, it just depends on if I'm in a flare. So a flare means like, when my stomach is totally not accepting food, it'll throw up everything, either an ice cube sometimes when I am able to eat, I do have limited intake. But a lot of times it doesn't really hit my system. So I end up kind of bolusing hours later. And sometimes I don't even need to bolus sometimes it just, it really doesn't even get to me. If I'm having a lot of carbs though. I might do I call it algorithm bolusing. Okay, so I'll do like a small dose weight of it. That's dose. Wait a bit. Next Oh, sweet of it. But it's not stalking insulin. It's just taking it safely. So if I sell off, I don't have to deal with a really bad load of follow up.
Scott Benner 23:51
Okay. So you're much more in tune with the concept of like, when I talk about timing insulin, you're doing you're doing that on a much bigger explosive level, like drugged out over much more time. How do you even so I, I don't want to bum you out. But it's, the question pops in like, how do you even get up the nerve to want to eat? And
Ella 24:12
honestly, it's evil. our stomachs are evil, because my friends always say that because we can be extremely hungry, but be so nauseous. So sometimes, it's literally a hungry and I'm so nauseous I don't throw off starving or am I hungry? Or am I nauseous? One stomach? What do you want? Like? We never really know if
Scott Benner 24:42
you just got shot. Yeah, and you can't not it's not like you can't you can't not eat but you do get your you do get nutrition through the port weekly.
Ella 24:52
From time from time to time I do go on APN it's called Total parenteral nutrition and that is why I get both nutrition and hydration and like fats and proteins. So on a day to day basis, my body is running off and failing and defies normal sailing. So ah is okay, if I talk about the
Scott Benner 25:21
lows a little. Do please. Yeah. Trust me, you you keep talking because I'm, I'm keeping up in my head, but I'm in my questions aren't coming as fast as they usually do, because I'm processing a lot. So go ahead, please.
Ella 25:33
Okay. So my low blood sugars are so different. And honestly, that's probably one of the biggest hassles. Because you know, when you're low, if you can just drink a juice box and be okay. You're, you know, you're good to go, you can be playing a sport, and, you know, come over here could drink a juice box, maybe some business you need to do for a bit. But then you're good to go with me. I have kind of a different story. So by Lowe's, we start trading my lows under 120. Okay, so I have extremely crazy parameters, my parameters, where we like to be is between 130 and 180. Because the lows hit me so hard, and it's pretty crazy. And I am I am mostly asymptomatic. But the dexcom is key for me, because it has saved my life over 280 something times in the past two years. So when I go low, I have to treat with IV dextrose. So I either have dsst and fuel, which is like this huge syringe filled with super concentrated like IV think of grape juice, like the IV version of breakage. So
Scott Benner 27:06
does it hit you really fast?
Ella 27:08
Um, I have to push it over eight minutes, or else it'll fail my Dexcom. Okay, but it does. It does hit you within about 10 minutes. You're you can talk again and you're good.
Scott Benner 27:23
So if you push it in too quickly, the Dexcom would fail to be able to read
Ella 27:28
Yeah, the Dexcom would do the quest those lovely question mark. And that's a headache and a half and then if I don't calibrate within an hour after dial to see Friday and I'll have to change the whole
Scott Benner 27:42
figure out how to move the dextra since and not cause an element on second Arden's texting about our lunch. Give me one second. I need to ask her how hungry she is. Thank you. We'll just keep recording as we do it. Okay, she's hungry. And let's think about our lunch. Well, it seems like forever ago but way back in Episode 47 of the podcast that is 130 episodes ago, I think. Anyway, a long time ago in the Juicebox Podcast I interviewed then, Oakland Athletics outfielder Sam fold, about type one diabetes. Since then Sam has retired he's now a coach with the Philadelphia Phillies, my hometown Phillies. And last night, I got to go down to a game take my son to see batting practice live on the field. Thanks to Sam. So many, many thanks to Sam. But as you heard in the Omni pod ad, while we were there, Sam yanked up his shirt and showed me his new Dexcom g six continuous glucose monitor. Now if you go back to Episode 47, when I spoke with Sam, he was on shots. He didn't have a CGM. He didn't have a pump. He had nothing. And I told him back then Sandy gotta try. And now he's using the G six. And he said to me, it changed my life, that quickly in a month, he know, how would you like your life to be changed. And I mean for the better in a way that makes baseball players smile. Go to dexcom.com forward slash juicebox. Get into a world where you can make diabetes treatment decisions with zero finger sticks, no calibrations, always know where your glucose number is, and where it's going. That's what the dexcom g six can do for you. It's what it's doing for Sam. It's what it's doing for Arden. It's what it's doing for countless countless people living with Type One Diabetes, be one of them. dexcom.com forward slash juicebox, the links your show notes, or Juicebox podcast.com. By the way, after the baseball season, Sam's going to come back on we're going to talk again.
Okay, she's hungry, and let's think about our lunch. I know what's in there. So I'm going to do this. A lot of units. I have to extend That a little bit not a lot. She's a little harder than I wanted to be right now. So let's do. Let's do 20%. Now
Unknown Speaker 30:12
the rest.
Scott Benner 30:15
Yeah, I was I was impressed with myself when I figured out this stuff, but your thing is way more difficult. How do you figure these things out? I guess because this is not something I would imagine that a doctor just comes in and goes, Oh, here's how you handle this. It's probably a lot. I mean, your trial and error is probably insane. Why?
Ella 30:36
I'm alive, right? Yes.
Scott Benner 30:39
How involved are your doctors and health care people and how much is just on you?
Ella 30:45
It all honestly kind of falls on my shoulders because I find what work and then they're extremely supportive. So we have done we have done a lot of experiments. One of them was actually the we call it g humping glucagon pumping. And so I would take an animal because they deliver one unit per second, it was the fastest delivery system. So I would at one point, I was putting glucagon in my enemas, vide, or in a tank. And wearing that and then just hooking up to Bolus glucagon when my blood sugar would drop. And then of course, wearing my other insulin pump, which would be probably the T slim and just kind of doing it like that. But unfortunately, the glucagon didn't end up working well for me at all. Because when you don't eat by mouth, you don't have the stored glycogen. And what a lot of people don't know is the glucagon. All it does, is it's like sending a text message to your liver saying yo dump the stored glycogen. Because it's not the actual sugar source, it just tries to trigger the liver to dump a stored glycogen to raise the blood sugar. Okay.
Scott Benner 32:13
So if it's not there, if the storage isn't there, then there's nothing Yes. And that's what you found out. We're trying to use glucagon.
Ella 32:20
Yeah, so if you don't eat it, if you can't eat enough by mouth, then glucagon is not going to help you. So that kind of stunk. So then we got to the point where I'd have decent tea on hand at home. And then dsst became like the new glucagon. So what I use on a day to day basis, though, for Lowe's is the five. So that is just a liter of fluid that has 5% dextrose in it. And just like an IV bag, and then that one I just run really quickly for like 250 ML, the Irie summer under juicebox amount of liquid and then I recheck and correct as necessary.
Scott Benner 33:07
And you said that there's you kind of said earlier, I want to make sure we hit it that there's a difference between a complication from type one and just developing another disease. And so, yeah, is there a feeling that this is just a development for you that it's not type one caused or and how would you even know that? I guess
Ella 33:26
my so I don't have your typical peripheral neuropathy and your autonomic neuropathy kind of case. I have multiple organ systems that are affected. So like I have dysautonomia, which is dysfunction of the autonomic nervous system. So my body has a very hard time regulating my heart rate, my temperature, my blood pressure, things along that nature, just vitals, my body does not do very well to adapting to the external environment. So if it's really if it's extremely hot outside, I don't sweat like a typical person, but my body literally cannot tolerate the heat and I just I can pass out very quickly because my body can't regulate it, and it's really hard. That's just one example. Um, so the Gasser precice is just a piece of the puzzle. Does the Vegas nerve. Are you familiar with that?
Scott Benner 34:39
big ol nerve?
Ella 34:40
Yeah, yes. So your vagus nerve extends from your brain down pretty far. And it can affect your stomach and gas or freezes can be part of it. Your heart can be affected your respiratory system can be affected. And, among other things, but I'll just keep it short. But I am checking riblets
Scott Benner 35:09
don't go check him out. Sure I'll wait. If I can't understand about needing to check your blood sugar, nobody would understand.
Ella 35:16
191 that's another thing that's so frustrating is some days I'll wake up. Like, for example, two days ago, I woke up I was like, 365. And an hour later, I was 60 something I'd gone. double arrows down, bam, pressed, what
Scott Benner 35:37
did you do anything to affect that 350 or it fell on its own.
Ella 35:41
I was asleep. And then I woke up. And I checked. And then like, before I even had time to Bolus. I was getting a double down on the Dexcom.
Scott Benner 35:55
Yeah, so that's a pretty big swing, because what if you would have done something about it? Right? And then it would have fallen on top of that, then you would have been in that situation in either direction. Okay, understand. So yeah. All right. So okay, so type one gas, your precess body has trouble regulating a lot of different functions, anything else so I can understand the whole picture.
Ella 36:16
And I have Well, I also have a pernicious anemia, which is autoimmune b 12. deficiency. I have Tourette syndrome. I have severe iron deficiency anemia. I have PTSD. And I have severe vitamin D deficiency. And I actually just established with a doctor, all the geneticists, you know, that is
Scott Benner 36:58
looking back into the history of your family and your genetics or maybe I'm wrong.
Ella 37:03
Essentially, yeah, pretty close. Yeah. Um, so that's just like the doctor. Right? Same for Yes, that exactly. So they do a lot of like chromosomal disorders or, you know, genetic disorders, such as, and he sent testing for a condition called mitochondrial disease. And we are awaiting those, all those results to come back. But because of the complex history, and everything that literally took me about two hours to cover everything with my doctor. He said that it's likely that I really do have a mitochondrial disease. So blood work was drawn and we're waiting on those results.
Scott Benner 37:53
What would that be? What is the impact of that?
Ella 37:58
I'm going to quote one of my favorite, kiddos, she explains it really well, in her video, and her name is Anne Marie. And she explains it like this. Every cell in our body, except red blood cells has mitochondria. But a kondia takes oxygen and food to create 90% of the energy. Our bodies need to sustain life. So mitochondrial disease occurs whenever the mitochondria fails to produce enough energy. That lack of energy leads to cell death, and multiple organ failure. multiple organ failure leads to the Death to the person who is affected, and to folk. Ah,
Unknown Speaker 38:45
well, that's not fun.
Ella 38:47
No, we don't have complete confirmation on it. But he was pretty confident that I may I have a mitochondrial disorder of some sort.
Scott Benner 38:54
And so I'm so I'm sorry to like, if it becomes too much and you want to stop, just let me know. I don't know how much of just regurgitating what you go through every day is helpful to you and how much of it might be because because you said you have PTSD. I'm assuming the PTSD is from the Panic of my blood sugar's falling, and I'm gonna die. Like like is that pretty much like after that happens to you enough times? It's just It feels like it. No, no, no, I don't know what to say next. So you go ahead and talk. What? That's my guess. But you tell me.
Ella 39:31
The Dexcom itself has saved by life more than like 280 plus times. So I was formerly living in my apartment up in New York. And not in New York City. the boring part
Scott Benner 39:46
of New York City, the boring part of New York
Ella 39:48
is the one that no one's ever heard of. And then I recently moved to Tennessee. Okay, and prior to When I was living in New York, I lived alone. And unfortunately, family is a luxury not a given. And so I've really been doing everything on my own for years throughout this journey. And I would go to sleep and I would have all I would call my diet stalkers by Dexcom. followers. I call them the diet stalkers because they'd suck my blood sugar, nice. And then if I were to go low, while I was sleeping, they would call my phone about, you know, 20 to 50 times, depending, if I didn't wake up, they would go ahead and dispatch EMF. And then the ambulance would come by Ms teams would come in, they like Ella was up for law, Li YOLO, or all sorts of good, and then sometimes I'd wake up a little bit and be totally out of it. And they would just deliver the dextrose by blood sugar would come up, and they'd be on their way.
Scott Benner 41:07
That does sound like something that I would feel stress about, for for absent
Ella 41:13
five times for horrifying. But then, in a way you kind of feel like, Alright, if I was gonna die from a low blood sugar, it probably would have happened by now. after all.
Scott Benner 41:25
It's pretty hell. so crazy. So instead of so instead of spending the last 20 minutes we have Dan, they're just going over. I mean, I think we've we've got a fairly clear sense of, you know, the scope and the, the impact of what's up I don't know, we know depth, but I think we understand that in total. So let me ask you some more personal questions since that. What is life like when this is your reality? Are you existing everyday is it just get up and let me stay alive till the next day? Or but you did say you like rock climbing? So are the things that you go do? Is it day by day? I'm assuming you don't work? I mean, hey, yeah, you're a full time student.
Unknown Speaker 42:08
I have a full time patient patient here full time.
Scott Benner 42:10
That might be the title of this episode, by the way. But, but but but Okay, so you, I would imagine that because like I said, like, I know people who are on dialysis, and that's a full time job. Oh, God. Yeah. Right. And so when you start adding all of these, I can't imagine you'd be you know, you're like, oh, and let me get a shift in here too. So I get that, right. But I'm trying to figure out for you, because you are. I've seen you in a couple of different modes, like you do Facebook Live sometimes. And I've seen you in a couple different modes, and I've seen bright, intelligent, thoughtful, loving, caring person trying to help out other people. I've seen you in a panic. And and I've seen you look so beat up that I was wondering how you even got the nerve up to like, sit up, do you know what I mean? Like and, and so I'm wondering how like, like, what is a day like, you don't mean like, like, how do you know what I'm saying? Like that's that's what I'm really interested in
Ella 43:12
a typical week, a typical week, I have anywhere from free his money as six to eight doctor's appointments. So a typical day for me consists of I effortless sugar roughly 15 to 20 times a day. And yes, I'm serious. Yes, I really do. I have the meter downloads to prove it. And my endocrinologist does my script is literally written for 15 to 20 times a day. Sometimes there are days where I only test 10 or 12 times but generally it's every two hours. And then whenever needed. So every time I get behind the wheel, I test when I wake up I test if I don't feel right I test and I do that as well as I wear the dexcom g five and the dexcom g five has been the piece that has really helped me navigate it's the GPS for diabetes I like to say so that said a typical day for me is I wake up and I push my nausea medication center again to my port and then I get my fluid set up and I just kind of still in bed until I'm feeling up to it and then if I have to go to appointment I get ready. And I also do like the normal stuff I am first your teeth and you know do your hair or whatever I
Scott Benner 44:43
would imagine. Yeah.
Ella 44:45
And then I you know get a blood sugar. Get where I want it to be. At least try. And then if then I come and take my morning meds after my non medical kicked in. And then I get on with my day. So some days, I phone for appointments, other times I go to the store. And sometimes I go volunteer at, you know, an organization like the Red Cross or the ADA or jdrf. Wherever I can help as I do, I have worked with some kiddos in my area over the years with who are affected with type one. And there's one little girl that I worked with, and her name is Noel. And she and I have a really good time together. And so sometimes her mom would drop her off. And I would, you know, we would just spend the day together. And it was easy, because I've been type one, and I know how to take care of her. But she has come such a long way. She's on the pump now. And he's thriving, and I love having the opportunity to help out with her. So sometimes I do stuff like that. But there are days where I'm in bed, and I'm not leaving the house, and I don't feel good. And I go between my bed and the bathroom and my bed in the bathroom. And I'm super sick. And there are times where I get really tired of this. by one of the things I say is sometimes we cry by a River Bridge, and get over it and come out stronger on the other side.
Scott Benner 46:39
That's amazing. Oh, well, because so what do you have? Do you have like long term goals for yourself? Like things you are trying to get to? Yes. Okay, what are some of those things,
Unknown Speaker 46:54
I
Ella 46:56
still don't want anything to stop me from becoming an RN. Because I promised my grandma, literally, she took her last breath that I wouldn't let anything stop me from becoming an RN. And that's where I call the Bret blessing in brokenness. I would not ever have been this prepared for nursing school, let alone a career in nursing. If I didn't go through this. So I'm wish I didn't go through this. But I appreciate that. It's made me as strong as an who I am today. And it's going to make clinical breeze because I've spent over 600 days in the hospital since August 11 2014. So I've had the opportunity to learn as I go, which is why I'm completely independent with my medical care. So I'm hanging IV fluids, I'm hosting IV meds on a daily basis, but I also know how to do port care. And I know a lot of I gotta got to be my own lab rapper.
Scott Benner 48:08
Well, if you have a perspective that most people will never gain, I mean, honestly, like on just, you know, on life on what tough means on what persistence means, on what, you know, on what a lot of things, you know, are at a much deeper, much deeper level than, than the rest of us. Like, I mean, excuse me, I got it, you know, I got a couple days ago, and I didn't feel well a couple days in a row. And so the idea of laid up in bed and barely wanting to move and can't do all that stuff. I get that but there's an expectation that that's going to end and that it won't start back up again. And so it seems like an inconvenience, not a you know, not a reality to me. But but yours is, you know, I'm going to get through this and it's going to happen again, it's not going to not happen again. It's it's definitely is. That's something that I just don't know that any of us can really imagine.
Ella 49:06
I'm on a quest starting in, I'm sorry, in 2017 I wanted to find a health healthcare that was competent, unable to meet my needs, because I don't want this to be the reality for the rest of my life. I want to get whatever I can to be able to get my health is stable. So another thing that really affects me is these net these vitamin deficiencies and minerals so magnesium, potassium, phosphorus, and iron. Those affected me really badly. Especially the beach falls like I was having neuro symptoms a little while ago and it was actually because part of the contributing factor was my vitamin D 12. was so low is in the two hundreds whereas the neurologist wants it in the 500 Okay, so that was really low. But that is just a piece of the puzzle. So ultimately, once I get all of these tests done, like I did, like I said, I relocated to Tennessee, and there's a lot of different specialists on there. And once I get God once I get all the testing complete, and we can find providers that can keep my level stable, like my electrolytes, my nutrition and my iron. Once that's all stabilized, I'm gonna be able to function because when they are stable, oh, my goodness, I feel amazing. I feel so alive. I feel like a human instead of like a walking carcass. Yeah.
Scott Benner 50:47
And so that's still a process that's ongoing. You You're, you're closer to doctors now that you think can help you. Yeah, get that into a better situation.
Ella 50:56
Yeah, and my goal is I want to get everything figured out, I want to get everything treated, that needs to be treated. Because come 2019 I want to go back to school. From day one, the first thing I want to say, first, the first thing I said is, I can't wait to go back to school, I'm going back to school, I'm gonna go back to school because I part of the reason I woke up is because I had a dream to become a nurse. And I've transition that from a dream to a goal. And part of what gets me through every day, even the hard days is definitely the support of what I call family friends. And a lot of the type one moms in my area have been just so amazing. And type one support mama and that. And a lot of amazing friends and through the community, through the type one support community and Susie, chronic illness support community has been able to maintain a positive attitude. And going back just brushing up on what you mentioned about what I share, I share what I do on Facebook. Because if I can help one person, realize that, hey, you can do this. Or if I can, you know, if there's one life that I can have an impact on. That's the greatest gift in the world, then all of this was worth it, then pushing on, in everything is worth it. Because bottom line, my ultimate goal in life, is just to have a positive impact on as many lives as possible. I was gonna say the summer, sorry, this is suffering. And as many lives as possible,
Scott Benner 52:39
I was gonna say that I think that what you share on Facebook is probably in some way, positively affecting more people than you might as a nurse to be perfectly honest, like not that not that that's not still an amazing goal, but it's still in the interim, you still are having that impact on people? Because it is it is it is completely impossible to even spend a couple of minutes watching what you're going through and not and not have those thoughts of, you know, if she can do it, I can do it. You know that that sort of thing? It really is? I don't know, it's I think it's really valuable for people to see and therefore valuable for you to share. And that can't be something that's simple. Like the first time you decided to tell people about this could not have been, it could not have been a fun or easy decision. I don't imagine but but I would imagine that everybody really appreciates it. I know that I do.
Ella 53:39
It's always really exciting to see when you jump on my live, I'm like, Oh my gosh, it's got better.
Scott Benner 53:45
You're very nice. So I'm not doing anything near what you're doing. And it's just, uh, I don't know, like, there's, there's times I think about you a lot. So I don't reach out a lot. But you you popped into my head a lot. So yeah, because you're just so you're very real while you're doing and there's no Um, there's like, there's no pretense to it. I don't feel like you're acting apart or just like, oh, people need to see me sick or like, you don't mean like there's, you're just very much there and, or, and just very, it's just really honest. So I find it really valuable. I can't imagine other people don't as well. I don't even know how you have the nerve to do that. I I don't have nearly the courage that you have. That's for certain. And as you describe your life day to day, it's difficult for me not to like interject my own thoughts over top of it and ask you like, do you know do you ever like feel like just giving up because I feel like it would make me like that. But at the same time I haven't been down your journey, your path. So maybe your path would harden me along the way you don't I mean, yeah, but just it's it's just, it's just Seems like from my perspective, I don't know how you do that, like, even like, I was gonna make a joke earlier that you might be at least a great person to ask about Netflix because you have all this time in bed, but you don't even have time in bed, you just bed bathroom bed bathroom, it's not even like you can lay there and go, Okay, I can't get up and get moving today, but at least I can binge watch trollhunters which I think now is just an insight into what I just watched last time. Netflix is a cartoon that I'm pretty sure it's for 10 year olds. But But anyway, like, you know, is it the? I mean, have you do you consider, like, how much of this Can I take or do you know, you can take it,
Ella 55:39
I kind of I'm not gonna lie. So in the beginning, I'm like, I can't do this, I can't do this, I'm so not ready for this, I'm not strong enough. And then the thing is, sometimes you don't realize how strong you are. Until being strong is the only choice you have. So I don't really I kind of keep the similar mindset like I do with type one, honestly. And I just thank God every morning that I have another opportunity to, you know, make, to be in this world and to do something with it. And kind of honestly, every day for me is like a kid on Christmas morning. Every day that I get here is like, as exciting as you know, little kids get on Christmas morning, because it's another opportunity. And that's the greatest gift, the greatest gift is definitely time and time with the people who you love most in this world. And there are times where you get down. And I do need to, that's when I say I take a moment or so forever, build a bridge, get over it. So I might, you know, take I'm human. So I do take the time to take a few minutes acknowledge what I'm feeling, maybe call one of my best friends or call a support person. And be like I'm so sick and tired of this. And then we end up laughing and then that's a call that part building the bridge. And then we go ahead and you know, we move, move on and you know, keep going and it comes down to it. You can either laugh, or you can cry. And if you can find a way to laugh, that's going to work out a lot better and crying for you in the long run. Because when you live here actually producing some income that totals hormones in your brain. And those two actually literally help reduce your suffering. So I do watch some TV shows, but I'm not really on Netflix a lot. I do. I honestly I'm just not a big fan of a lot of like TV shows. I do like a couple like bones and castle. But those are fun. I love Boston. I felt like I can relate much. But other than that,
Scott Benner 58:01
that's a very well, you know, it's funny. So we're wrapping up here on an account upon an hour already. That you early amazing. But I was thinking this morning about something completely disconnected from you, I was watching the news or you know, paying attention to the news. And there's a lot going on politically and there's a lot of people being indicted and things are going on like that. And I it made me think of if I was guilty, right? How long would I fight? Like At what point would I say you know what, you got me I give up and then I realized probably never like if I did something and you caught me I deny it right till the very end and I think that's a human condition that that is that is the human spirit in a funny way, right? Like the idea of I'm not gonna give up. I'm not I'm not giving up. You can kill me if you want. But I'm not giving up I'm not going to be the one to say I'm done. I it's just me that the human mind and the human body. It wants nothing more than another minute. Like do you know what I mean? Like you like that's that's the thing that most of us that keeps most people going it's you just you don't want to stop and by stop I mean like you don't want to not exist anymore in whatever form that might be you just you want another second in the game and you'll almost do anything for it. And it's it's almost kind of despicable is that is in an illegal situation. It's also the same function that I heard you talk about for the last hour I can't believe that it's something that randomly popped in my head and you basically talked about it all morning, which is like you're not giving up you know, I mean like you went through Excuse me? I've been sick but he went you went through you know you've got type one you've got gastro priestess yet all all the things that you listed and then possibly something else on top of that. I never heard you say, but I'm going to wave a white flag. Like I heard you say one another day. Like I want to get up I want another shot at this I want to try to fix it. I want to be better there. I know there's a world where I feel better because I've been there. How do I get there? And stay there so that I can make the most of every one of these things? I 23 you have like the perspective of, of like, 1000 year old person, you don't mean like, it's no, it's amazing. I know some people you should talk to me on it, that would be awesome. Now they should pay attention because there are some people need that kind of perspective would be very, very valuable for a lot of us. So I really appreciate that you put it out in the world like this. Thank you very much. Is there anything? I didn't ask you or anything you wanted to say that that we didn't get to say?
Ella 1:00:40
And I am not only on Facebook, I'm also on YouTube. I was feeding type one. It's all lowercase MySpace, EA t i n g. CYP one. And I was inspired by some of the early diabetes bloggers and I also have a blog, which is Bolus of hope. org.wordpress.com
Scott Benner 1:01:09
I'm gonna get you to email me all your links, and I'll put them in the show notes so people can see them. Who was a Did you have a blog or that? Now I said this I put myself
Unknown Speaker 1:01:19
read yours. Don't I thought when it was first kicking off?
Scott Benner 1:01:23
It's gonna say don't say me. But is there someone? Is there someone that like that you saw that like or why? Let's say that you saw a blogger? What What about them made you think oh, I should do this, too.
Ella 1:01:35
I was really inspired by Carrie marone. Starling. And diabetic Danica.
Scott Benner 1:01:42
Okay. Yeah, there's two good ones. I could easily see being inspired by both of them. Danica does such a great job on YouTube. And yeah, and and Carrie is a machine of like, honesty. And she she can she blogs. Like it's a like it's really sad. I'm, I know that I know that. You were probably I don't know how you would say this, for sure. But I think Harry's probably got one of the oldest, if not the oldest type one diabetes. Yeah,
Unknown Speaker 1:02:12
I believe it was 2005. Yeah,
Scott Benner 1:02:15
like, I think it was her. Then Scott Johnson. I know I came in sometime after that around 2000, early, early 2007. And there were some other ones in there too. But you're really talking about a smattering of these blogs. I joked with somebody the other day that I had a blog back before people knew what a blog was, I've had one so long. No one even cares what a blog is anymore. So I somehow we lived through most of the of that. But I've seen blogs help people in ways that, you know, I imagined couldn't be any greater and then listening to you just now say that some of these have had an impact on you. It reinforces what I thought about them. It's just such a very valuable and an honest thing when people are willing to share like that, so that somebody else can see it. And now you're part of it, too. You do it as well. So I think you do it as well as anybody. So congratulations. Very well done.
Ella 1:03:11
Thank you so much. This is such an honor. No, I can't thank you enough.
Scott Benner 1:03:16
You're you are very kind to say that this is just you and I are just talking on the phone. It's just happens to be recorded and a bunch of people are gonna hear it. That's all.
Unknown Speaker 1:03:23
Yeah. All right.
Scott Benner 1:03:27
Though, you were you were great. You weren't? Listen, you were 100% fantastic. Your voice sounds clear. You know what you're I mean, listen, I love talking to people about their lives because like I said, at the beginning no one knows your life better than you. And if you're willing to talk about it, the answers are just incredibly they're valuable in ways you can't even imagine. So you're going to have helped people with with what you did here today. Again, in ways you're not going to completely understand so really well done. Thank you so much. I'm going to stop the recording and then say goodbye nicely, and like people hold on one second. Hey, you can check out Ella's YouTube channel@youtube.com forward slash beating type one and definitely find her on Facebook. I'm gonna put a link in the show notes to both of those things. Thank you so much Ella for coming on and sharing. Seriously I don't even know what to say just really amazing of you to come on and tell the story. Thank you dex calm and on the pod for your continued sponsorship of the show dexcom.com forward slash juice box my Omni pod comm forward slash juice box the links your show notes or Juicebox podcast.com MDI users if you did not hear Episode 174 with the people from in pen, go back and listen in pen makes an insulin pen that combined with their smart app gives you a ton of the functionality that insulin pumps have. Thank you so much for listening and thank you for the great reviews on iTunes. The podcast continues. To grow because of you and your sharing Thank you so much. I'll be back next week with another episode of the Juicebox Podcast.
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