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Jill Brook: Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with POTS Mom, Emily. Emily, thank you so much for joining us today.

Emily: Very happy to be here.

Jill Brook: So maybe for starters, you could just tell us a little bit about yourself and your family.

Emily: Okay, sure. We live in Nashville, Tennessee. We've been here since before the kids were born, so I have two daughters. They are, we call 'em, they're close to Irish twins, they're 20 months apart. So they kind of grew up together and one of them has a lot of health problems. The other one does not.

So we have a, we have control and we have the experiment. But they're, they're sweet girls. We love 'em. And they're currently freshmen at Covenant College in Lookout Mountain, Georgia.

Jill Brook: Okay. And so I assume that the one with the more POTS related story is the, what you're calling the experimental child.

Emily: [00:01:00] My experiment. Yes, that's Rebecca.

Jill Brook: Anything else we should know about her? What is she into, what is she like?

Emily: So Rebecca loves basketball. She loves reading, she loves K-dramas and she loves chocolate. So that, that, that's how I would describe her. She's a very bold person when she's feeling good. She's got strong, strong personality. Very stubborn when she's got her mind made up to do something. Which is why she's kept playing basketball despite being so sick for so long. She's managed to find ways to keep playing.

And that's just, it's been an, an amazing answer to prayer about that. But she also has learned to love quieter things like drawing. She's gotten pretty good at painting and different kinds of art. I don't even know all that much about the mediums that she uses, but she loves gouache and things that I don't know very much about. But she has a lot of fun with that. So, [00:02:00] yeah.

Jill Brook: Oh, fantastic. So usually we like to ask people to kind of like back up to before POTS entered their life and kind of tell us what that year was like and what you were up to, and give us a bit of a snapshot so that we can sort of maybe see the difference later on, after POTS enters. What, what did your family's life look like before POTS?

Emily: Okay, so it's hard to say. We aren't, we aren't a hundred percent sure when POTS started. I will just say that, you know, from the get go, she was having trouble nursing and sleeping and, and then her first allergy was diagnosed around three. And so then from then on we were in and out of allergies trying to figure out how to, to deal with those. I don't know if that was MCAS, but it certainly was some sort of hypersensitivity to lots of things. She even had an allergy to carrots, which I thought was pretty funny. She, she was really happy about that one. She didn't have to eat the carrots anymore. So [00:03:00] then I would say that that kind of went on all the way up to about 2016.

So when she was about 10. Between 2016 and 2019 is when she, she basically started having this kind of ramp up to puberty and some hormone fluctuation started, and she had some of her first POTS like episodes as part of this sort of suite of symptoms that she developed around that time.

And in some ways the POTS kind of things were new. But she definitely has some sort of hyper flexibility going on. So we don't know if she has EDS per se, but we always thought it was just a normal thing because her dad is very flexible, her sister is very flexible. They both faint sometimes when they stand up too fast.

But it's not a big problem in their lives. You know, it's maybe, I think Anna's my other daughter, her problems might happen more when she has a cold or something. [00:04:00] But so around 2016, 2017, that was when instead of just having some allergies and having some acid reflux and sleep problems, now we're starting to have some more I would say like sensitivities to light and touch and sound. There were times where her nervous system just seemed way too overstimulated. So she would have anxiety, stress, fatigue, and it was just kind of ramping up. And part of that was the POTS like feeling of feeling faint, I guess, and maybe feeling like she was gonna black out. That was never an extremely prominent part of what she was experiencing. Most of what she experienced was more anxiety and she would always have like more allergies and intolerances as her, as her symptoms would get worse. And they would just kind of all, it was almost like, I would think about it as like dominoes would fall and it was either going up and getting worse or [00:05:00] it was going down and getting better.

And it was as soon as we noticed, oh, this is getting worse, we would try, try to work really hard to figure out what is causing this, what's triggering this. And it was just this, like, this game to try to figure out, to try to beat her body and figure it out and get something removed or change something so that she could kind of stop that progress.

And sometimes it would work and sometimes it wouldn't. And really in that, up to about the 2019 year, it was just continuing to get worse and worse and worse. And she was not really able to do much school. And there were times where she would be out on the basketball court and she would just be standing there like her brain would just like turn off.

You know, and we would and and you'd be like, wake up, wake up, what's going on? And she just would need to go rest. But so that's kind of, that was when we were first starting to deal with some POTS, [00:06:00] even though that wasn't a super prominent part of it. I'll tell you the rest of the story in a minute, but basically eventually it came back again with all these symptoms and, and it did become more prominent.

But for right now, that's, that's basically the first time she kind of experienced that.

Jill Brook: We hear that sometimes before that there's a kinda like a prelude and then it just comes roaring back later.

Emily: Yeah. Yeah. So it was really amazing. And so I you know, basically she kind of got worse and worse and worse till about 2019 and she was having some severe cramping at that point. And we had been working, we had finally figured out, oh, the gut microbiome is a thing and maybe it would be good to, instead of only asking what is the trigger food, like, maybe we should be cultivating health and eating less processed foods and more plant foods and having a garden that we're growing. You know, so we were learning things and things were getting better, but [00:07:00] there was something, and I had really narrowed her food down a lot, 'cause I knew that dairy caused her problems, I knew that gluten was an issue. So I'd taken out a lot of things. She had a lot of chickpeas, which was turned out, was really great, but I didn't know.

And, and I used to put garlic on the, the chickpeas which turned out to be like the worst possible thing. But, anyway, so she continued just having some really extreme stomach cramps and, and I would just say, say like, we went to lots of doctors in this time and it, we just found that whole process, they just weren't very helpful. And so we would, I would tend to get fed up and we would just take a break for a while. And then sometimes we would go back, and then sometimes we would try to go see a chiropractor or different person. And but I would say around 2019, I, we, we got really desperate and, and we actually you know, not to get into a whole lot of spiritual related [00:08:00] things, but, but we did have spiritual warfare related with this.

So just, it was just it was just kind of scary. It was scary. And we went, and when we finally realized what was going on, we just, we went and had the elders at our church pray for her and she got better. So for like three and a half years she was better and we were so happy. And she went to school and she started playing basketball again.

And so it was amazing. So that, that was like the first phase and, and we just kinda had a break. And then we had another sort of trigger in 2023. So that was the, the next thing that happened on our story. And that was when we really started seeing the POTS come forward. So in 2023 in May, she had her meningitis vaccine and at the same time, she may have also had COVID. We don't know for sure. She definitely had a cold. She had some sort of virus and she was not super sick. We asked the doctor [00:09:00] about it. We were, we were just, we were going to the pediatrician at that time and she was like, you know, I think it'll be fine. Just save yourself a trip and give her the vaccine right now.

And, so she, she took that vaccine and that was a trigger that just immediately set her off again. And, and it was, I did not think a lot about it. I, I never doubted that this was the trigger, probably these two things together. But I never like, took notes about it or tried to document it. I never imagined myself talking about it years later because she had so many allergies along the way to so many things.

Like there was one time I put lemons on her, on her fingernail to try to keep her from biting her fingernails, and she had an allergic reaction to the lemons, you know. She could just be allergic to anything. And and so I just, I really thought that if we could give her some, you know, lots of rest and good food, healthy food and just try to, you know, do [00:10:00] some calming things.

By this time we had figured out, oh, you know, vagus nerve simulation can help calm that, that nervous system. And so we definitely tried to do all those things and, and the months just went by and she was not getting much better, you know. And so at that point, that was the first time we saw her really fainting with POTS and just like standing up and she would just crumple. Had no idea what was going on.

She definitely, again, it, it still was not an extremely prominent part of all that she was suffering. A lot of her allergies and just the, the nervous system stress was much worse. She still, she was already having some fatigue. And all that light, sound, touch, sensitivity, all of that comes back.

You know, she doesn't wanna go places where it's loud. It's really hard for her to go to church because we have a loud organ in our church and you know, we go in and [00:11:00] we go out and we go in and we go out. So there's lots of things going on at that time. In 2023, because we hadn't been to a regular doctor for a while other than our pediatrician, we hadn't been to any specialists, we hadn't spent much money on it anytime recently. So we thought, hey, let's spend some money on this. So we went to the Vandy Children's Hospital and saw a rheumatologist there, and she was very nice. But she totally missed it. And we didn't know about POTS at this time either. We didn't know about POTS, we didn't know about MCAS, we didn't know EDS. None of it. All we knew was that she had allergies and and then we had, she had the sensitivities. She'd been diagnosed with that. The new thing that she started right before we went to the rheumatologist was she had some sort of exercise induced hypoglycemia. So she would go out and play basketball for 15 minutes and she'd just be running on the court and all of a sudden she'd come over to the side and just be shaking.

And as I [00:12:00] said, you know, sometimes it was like her brain would turn off like it did before, but this time I think there were some POTS things going on at the same time. And so she would just lay down and just zone out and she would be shaking. And if I could get her to drink some juice or we figured out, you know, the, the blood sugar, it was a blood sugar thing, and she, she could eat something or drink something quickly, she could stop it and, and she would start to recover. All of that, no one was helping me with. I'm just literally just looking at her trying to figure out what she needs and testing out different things. So, I mean, I don't know that that's, that's kinda where we were at that time.

And we went to the rheumatologist and we explained all this and we were, you know, and she did some tests, did her blood tests, and she said, yeah, this is I think this is psychosomatic and...

Jill Brook: Oh no.

Emily: She needs to go do some therapy or what have you, and, and sent us home. And so we were, so, I, I, to some extent, I [00:13:00] kind of expected that to happen because that's what I had been through with her. And that's why we had stepped out and I had done so much stuff, gardening, et cetera, things that I could control, you know?

Jill Brook: So you had already faced that first one.

Emily: But she didn't, she didn't remember that kind of thing. And so, so then this was the first time, 'cause she was 17 at the time. And she had blocked out memories from earlier.

There were, there were whole years that she doesn't remember very much. Like when she was having all that stress.

Jill Brook: Oh, but that's so interesting that like you kind of knew what to expect from the conventional medical system, but you had protected it to her, so you had to watch her experience.

Emily: Yeah. And I, and I hoped that it would be different, and I, you know, you, you, you never know. The way that I think about it now is that there's probably good doctors and bad doctors in every different area. You know, you, you, there's not just one hospital that's gonna have all the good doctors.

It just depends a lot on the, the [00:14:00] ability of that doctor to do their research, you know? But but so anyway, yeah, so it was extremely sad, just driving home with her that day, because she really hoped to get some help. And instead the person just didn't believe her. You know, it just, this isn't real. I mean, she did think it was real, but she was like, you know, this is probably just like a panic attack or something. So after that we just totally gave up. We didn't know what to do and we spent a year. At that point I was watching a lot of podcasts, so I would try to, try to learn, I was just trying to learn everything I could. But I really didn't know what to look up and what to learn about, you know? So I did find out that marathoners have a lot of tricks to keep their blood glucose stable while they're exercising long periods of time. And I figured out, I thought, well, her, she's kind of like a marathoner, but hers just runs out really fast.

So we could use those [00:15:00] tools and it kind of worked. We were able to help her get to be able to exercise more. And by the end of the year, so she was coming around like April, beginning of May, she was doing a lot better. And so her nervous system was still revved up, but she was getting a lot of exercise and so it was kind of calming it down, just getting a lot more oxygen throughout her body.

And this was the summer before her senior year, 2024. We knew she was gonna have to go to college potentially after that. She really wanted to go to college. She wants to be a psychologist. That is a, a big dream of hers. And we thought, okay, she needs to go spend a week at a camp at a college, so we can just test this out.

We need to know if she can't do it. And so she went to Lee University and she stayed there for a week. The camp was a two week long camp, but she ended up only, she, she came home after the first week. That was the first time she's ever spent the night away from us. It was a huge deal. [00:16:00] We were so proud of her, but she kept calling us and saying like, mom, I'm so tired.

I'm like, just do your best. Your body will adjust. Just keep going. Which was totally the wrong thing to do. We didn't know that that was just, she was really just pushing herself way beyond what she could do. And so then when she came home from that she just never got over it. She just, she had chronic fatigue at that point. We kept waiting, one week went by, another week went by, another week went by. Same amount of tired. And so, so that was her senior year. She ended up having to drop out of high school. And thankfully we had homeschooled before. My younger daughter was homeschooling anyway because she wanted to take some classes at a college nearby.

And so they just homeschooled together, graduated, and we ended up going the alternative medicine route. And around her senior year, around January or February, I got the idea to research [00:17:00] long COVID. It finally occurred to me, you know, this is, it seems to be viral related.

Every time she gets a cold, it sets her way back. Her immune system just goes wonky. So I started researching. And I, I use AI, I use Notebook LM, I use Perplexity. Google Scholar eventually came online and I could use that to search. And then I also started listening to more podcasts and finding doctors to listen to and not just, you know, influencers. And that's how I came across the POTSCast, which was great.

I don't remember at what point exactly I found out about it, but so many, so just really high quality doctors are out there talking about these things. And so, and so I just started out with long COVID, started researching that, and that led me to, oh, okay, this is called chronic fatigue. Okay, so then what else is usually goes along with that?

Oh yeah, okay. There's MCAS and there's POTS. And then what can we do about it? And we did some experimental [00:18:00] treatments. We did physical therapy for her hyper flexibility. She did, instead of doing HBOT or hyperbaric oxygen therapy, she did EWOT because she could exercise at that point quite a bit, and it was way cheaper.

Jill Brook: What is EWOT?

Emily: So EWOT is exercise with oxygen therapy. So it's very, it has a lot of the same benefits as HBOT but it's usually a lot cheaper if you can find somewhere to do it. Or you can just, I mean, I, I wouldn't recommend, so I just goes out and buys it, but you can buy it and it, it will be a lot cheaper than HBOT. Like, I think it costs us $30 per visit.

Jill Brook: So the idea is you're exercising with extra oxygen.

Emily: Yes, yes. And you know, like a lot of these elite athletes and mountain climbers and stuff do that, that to to just like recover from really hard workouts or whatever. And, and they have found that it's beneficial in a lot of the same ways that HBO is. And it's just, it's a lot cheaper. [00:19:00] And if you, if you can do the exercise, if you can just ride a little bike or run on a treadmill or what have you. Yeah, it's it can be really helpful.

Jill Brook: Oh, that's a good tip. I hadn't heard that one before.

Emily: Yeah. So I can tell you about lots of other things we did and we tried, but the, the, the upshot of it is that last fall she was better enough that she could go to college and we just considered that a miracle. We were so, so happy and every day, you know, it seems like she might have, especially early on, we thought, well, she might come home today.

We don't know. But you know, we just, we just prayed about it and did our best and there we are. So, thank you, Lord.

Jill Brook: Wow. So you really ended up having to do a lot of the heavy lifting it sounds like, in terms of figuring out what this was.

Emily: Yes, yes. No, I so I ended up finding one guy who had a, like a, I don't know how to, it's like an experimental medical facility type [00:20:00] thing, and I don't really know how to describe it. But it's almost like a medical spa, you know, where people just, it's kind of, it's very, everything's very expensive. And so, but the thing that he did that really helped her was the neurofeedback.

The neurofeedback, really, really helped her anxiety. And she couldn't have gone to college without that. And yeah, so I, I would say that what I did was I found some ideas of things that I thought would help her, and then I went looking for somebody to do it, and I found this guy and he did some of them.

And then we kind of felt like, well, she had to, she actually went to college and we ended up moving over to an integrative medicine family doctor who would basically treat her via the web, you know. She has to do it virtually since she's far away. And, and that has worked well. And one of the things that we probably got from your, from POTSCast or probably and more than one place [00:21:00] recommended it, but I had heard people talking about LDN. And so she has taken that this year while in college.

She started that in November, and by January she had some pretty significant benefits from that. So that has really stopped the viral just downturn where she, if she would just get a cold, you know, it would just set her way back. So now if she gets a cold, she just kind of gets a, some cold symptoms and then they go away.

You know, it's, it's just pretty normal. So, so far she, since she's been taking that, she has not had any big setbacks. But what we have seen, unfortunately, and I would love to ask you about this, because she as I said, POTS has not been very prominent in the things that we were concerned about her. But with this LDN, the LDN has really helped a lot of the other things.

And her chronic fatigue is, is a good bit better. But we are seeing her POTS either I think partially getting worse [00:22:00] and/or because the other symptoms are better, she's noticing it more. And so I, I know that she's ha she has a Whoop band, which the Whoop band is really helpful at helping her have some objective data points for what's going on in her body.

And so just trying to go by how she feels, which is really confusing sometimes. And so it's showing that she's having this tachycardia just like super, super high when she's doing things like getting dressed in the morning, but things where she's like bending over, you know? And and so she's trying the compression socks now for that.

But I, I do wonder, we don't, we have never seen anyone who is a specialist in POTS and I'm wondering if that is the next step we need to take or if you have a suggestion for what, what you would do in that situation.

Jill Brook: I guess, so obviously this isn't medical advice, but I feel like in order to get in to see any POTS specialists, it's usually a long [00:23:00] wait anyways, so I always like the idea of doing anything you can do while you wait because there's nothing more frustrating than waiting six months for a specialist and then they tell you to just do more salt and wear waist high compressions and you're like, oh, I could have been doing that for the last six months.

I guess I would experiment with different kinds of compression up to the waist. Make sure it's really, truly graduated compression and that it fits really well. And try, you know, assuming, you know it's okay with her, her doctors, you know, different amounts of salt and electrolytes and water.

And some people, if they chug the first two cups before getting out of bed in the morning, that helps them to get dressed. They don't even do anything until they chug that first two cups.

Emily: So maybe test out some of those things, huh?

Jill Brook: Even do some like little half muscle pumps and try to do things to get ready for the day. I personally find that [00:24:00] keeping, I don't know if she has the option to keep her home colder, but a few degrees colder always helps me.

Emily: Yeah. She definitely does not like the hot. That's definitely true.

Jill Brook: And then it sounds like, I don't know if she ever had a real mast cell diagnosis or testing, but it sounds like she has so many allergies that I guess keeping in mind that that could be a big part. And I don't know if she's done the things for that that you can do at home before seeing a specialist. And again, she should check with her doctor, but just seeing how much better she feels with antihistamines. I remember for myself, the first time I ever took antihistamines, it was because a wasp stung me and I was so puffy for over a week that I was like, geez, what's going on? And then I took antihistamines and I could stand up for the first time in like 10 years, and I started being able to sweat again for the first time years. And I thought, weird. [00:25:00] How could so many things be helped by antihistamines? As it turned out I had MCAS, but so anyway, learning a few of those things before you see the specialist to make that first appointment made a lot more productive so that you can say, I already tried the antihistamines. What else do you have?

Emily: Well I appreciate that. We'll, we will I need to do some more research. I probably just need to sit down and do the next phase because I spend a lot of my time just making food. That's the main thing that I have to do because she just, she just does so much better if we can give her food that we know doesn't cause any allergies and intolerances, and and just, and also that it's like optimized. You know, you can, she could be okay with a lot of food, but if you can get more fiber in there and get more just making sure that she's got, you know, got some kale and got some just really high quality vegetables and [00:26:00] things just seems to do better, so.

Jill Brook: You know what, sorry, I thought of one more tip that I have that I so, so recommend to anybody in this situation, and that is to check out the free RTHM Intelligence platform made by RTHM Clinic, RTHM.com. Sign up for the free intelligence platform, and it is designed to use AI to walk you through a whole process of asking you about your whole history, allowing you to put in any any previous test results or documents you have. It asks you questions and it can really do a lot and it can recommend which specialist you see and what you ask about. And I just can't say enough about that program. I've been using it myself and I really think that it's the first time that, at least for me, I see AI really changing the medical world for us and [00:27:00] making things better. And it's all created by Jen Curtin and her team. And she was an ME/CFS patient herself. She gets it and she's curated the whole thing to have the right the right studies and the right research to base everything on.

Emily: That sounds great. That sounds like that might save me a lot of time.

Jill Brook: Yeah. Yeah. And, and it's not a replacement for a doctor, but in preparation.

Emily: Yes, for sure. I mean, I, you gotta do the research. That's how I feel about it. I think that that was one of the big shifts that I had to make was I, I looked at medicine and health as the same way that I do as my car, you know? It was just like, when something goes wrong, I take my car in, they fix it, I pay them, I bring it home and it runs, you know, and that was how I expected things to go with my doctors. And that's not how it went. And so then kind of trying to make that mind shift [00:28:00] toward you know, just taking more responsibility and, and having to do the legwork of figuring out, you know, what should I be asking at the least, going into the doctor's visits, being able to ask more questions.

Jill Brook: Yeah. One more resource if you wanna feel like you just are getting to go shopping for treatments for long COVID and related conditions. And it's made by the same wonderful group. I'm not affiliated with them. I get no kickbacks for saying this. But the RTHM Clinic has collaborated with the Patient Led Research Collaboration and they have created the Long COVID Treatment Guide and it summarizes, it's like 18 different drugs, like five different supplements, four different lifestyle things.

Emily: Okay.

Jill Brook: And medical procedures and it's just like one page for each one. And it says, here's what the data show, it helped this many, here's the side effects, here's the [00:29:00] benefits, here's what it is. And I don't even have anything related to COVID, but you know, I have the same issues from since before COVID, and I've used it to learn about new things and treatments that I had not known about.

I don't know, I feel like sometimes, like there is no amount of research that can be done to understand everything involved with as complex of a situation as this is. Because what I'm hearing is that there's maybe some genetic issues and you know, things since birth and things related to hormones and maybe a vaccine reaction and, you know, maybe things related to foods and MCAS and ME/CFS and, and so what I like about this treatment guide is it just gets you straight to here's what worked for people like you. And it just feel like you're almost like the Sears catalog, but instead of shopping for clothes, you're just like shopping for potential treatments.

Emily: Yeah. No, I love that. I will definitely check that out. Thanks for that recommendation. [00:30:00] Yeah.

Jill Brook: Oh my gosh. Well, you have just done so much as a mom. You know, we sometimes, we sometimes joke around here about how the key to surviving chronic illness like this is oftentimes for many people having that mom who just takes it on and does so much work and fights for you. And I, I'm sure that there's a thousand stories that you didn't tell. You know, I think about the doctor's visits that you had where they didn't believe you or her, and probably how much challenge that was for you both afterwards. And just to have been there for every single part of it, I think she probably knows how lucky she is and I am sorry that that had to be done, but wow. Wow. How much, how much love you've put into trying [00:31:00] to make her as good as she can be.

Emily: Thank you. I appreciate that. That means, I don't know why, but that's hitting me. Yeah, I'm actually recording right now in her room. So this is where she's lived since she was a baby. And you know, I can remember those days when we first brought her home and I'm like sitting here in the floor and we, we, we were like, oh, we're gonna do the cry it out method.

And this is, you know, absolutely the only way to raise a child and we will never change. And then we get this kid that just blows everything to pieces. We're like, oh shoot, we don't know what to do. How do I deal? You know, it just like, you're just like, so much lost sleep, I mean, through so many years.

But, but also like calling out to the Lord, asking him, please just show me something that I could do that would help just, you know, even if, if you're not gonna fix it, help me figure out one thing to make it better. And like, and, and learning, like when she was an [00:32:00] infant that I could just pat her back, like just rub and pat her back.

If I would pat her back, she would go on to sleep sometimes, you know? And so then all the way up to now where, she, she called me the other day and she was like, mom, I can't find my card, the card she uses in her college to get into all the doors. And she's like, I don't know what to do.

And, and I'm like, Lord, tell me something that I can do to help this child because I want to say go to bed. Just go to bed and then you'll wake up in the morning, you'll know what to do. But if I say that it could make her very sad and like, I may not go well, and, and I, you know, so what do I say? And so I kept trying to figure out what to text her.

I'm like, should I just text her a Bible verse, should I just text her go to bed? And then I finally thought, okay, I, I couldn't figure out what to say and I was like, I'm just gonna call her. So I called her, she's like, I can't find my card and I need it [00:33:00] tomorrow. I was like, can't you get somebody to let you in your room?

Well, yes, but, but they may not be there at the right time. She had all these reasons why it was an emergency, and and I was like, well, you know, I don't know why, but I think you should look in your laundry room because I think she's, she's got a laundry basket. I was like, I, I have this idea that I may have moved that. When you first came in, I think it was by the door, and I may have moved it, so maybe it fell in there. And she looks in there and there it is. There's the card. She's like, I can't believe it. And she's like, mom, you're the greatest. I was like, okay. Hey, I do what I can. I do what I can.

Jill Brook: Yeah. Oh, well I'm so happy that she's in college and it sounds like, you know, doing okay there. And I guess my question for you is, is there anything you would say to other POTS parents out there? Anything that you wish you had known sooner or any advice or anything?

Emily: [00:34:00] I mean, just practically, I asked Rebecca what she would say and she was like, people need to know about electrolytes. I was thinking to myself, I think they know about electrolytes. You just didn't know about 'em. And and the Whoop band, I, I felt like the Whoop band was super helpful. I did not think it would be helpful.

Somebody gave it to us and said, you should try this. And we were like, ah, I don't know. That just seems like another expense. And we already know when she's feeling bad. Why do we need to know that she didn't sleep well, we already know that. But but it turned out to be an objective data point that she could look at in the morning and say, okay, I actually have this recovery today.

You know, just made her able to budget her, her day and her energy for the day much better. So I would say it, it's been a huge help. I do think that, I mean, just don't give up. Keep looking. Keep looking for answers, keep seeking. There's new things being discovered all the [00:35:00] time.

And you know, there are a lot of times where I kind of did give up for a little bit of a period. But then something would happen and, and I would think, okay, I've got to reengage. I, I didn't think that I could keep going. I didn't think that I had the strength and the energy, and I just had kind of lost hope.

But you know, one Bible verse that stands out is cast your cares on the Lord for he cares for you. And so just this idea that, you know, however it feels, and, and I'm sure that there are many people who have gone through the things that we have gone through where you just, you just don't know what to do, we don't know what to do. But we there was always, we always felt like even when we would feel like giving up there would always be that something else would happen, something else would come to, to help. There was always some help. Even though it wasn't always the help that we wanted.

Jill Brook: So what I'm hearing is if you can just hang [00:36:00] on little bit longer, something will come.

Emily: Yeah, I mean like the word from Revelation that is just like patient endurance, just patient endurance. It's just persevere. Don't give up. And and I would say like a thing, I know that not everybody is super spiritual and that's okay. I, everybody, you know, do what you wanna do.

We, we are, we're in a free country and God bless you. I would just say for me because we are so spiritual and we have, I would just say that like prayer has been a really big part of our journey and we've seen it do, we've seen the Lord work through that. Things that we thought couldn't be changed were changed.

Things that we thought were dead ends turned out to be an opening up to something else. And so for us, I would say like early in this journey, I thought prayer was important. Now I just feel like every, every [00:37:00] single day I'm like holding on. You know, prayer, prayer is just like a, it's almost like breathing.

So I would just say, you know, if you're interested in prayer, if you wanna learn about it I, I definitely recommend it. And I, I think that reading, you know, reading the gospels, reading about how Christ healed people, that can be very encouraging. Although I, you know, I don't believe that everybody is gonna be healed in this life.

We're all, we're all gonna have struggles and trials, but but I do think there's spiritual help, through prayer, is what I'll say.

Jill Brook: Well Emily, thank you so much for sharing your story and your family story. And I know that everybody listening is wishing you guys all the best. And I guess my, my hat is just off to you and all the parents and friends and loved ones like you who have been there by the side of somebody struggling just every moment's doing [00:38:00] everything you can. It's just beautiful to see. And so thank you for sharing your beautiful story.

Emily: Well, thanks for allowing me and thanks for all you do to help us. We've, we've learned a lot from you and what I'm sure we'll continue to.

Jill Brook: Oh, thank you. Okay, listeners, that's all for today. We'll be back again next week, but until then, thank you for listening. Remember you're not alone, and please join us again soon.