Lily’s transition to career and adulting

[00:00:00]

Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an episode I'm so excited about. We are getting an update with Lily, who was episode two, our very first POTS Diaries episode. She wrote the book that founded the non profit, Standing Up to POTS, and we have not talked to her in a long time, and she's been having all kinds of of exciting things go on in life.

So, Lily, thank you so much for being here.

Lily: Of course. Thank you for having me again. It's really nice to talk to you again.

Jill Brook: So, I think last time we spoke in episode two, you were in college, I think you were in your late teens, I think you were living at home, I think you were dealing with some significant symptoms of POTS and related conditions, and I think you were working really hard to graduate, and [00:01:00] get to a place of starting a career and becoming independent.

And so maybe today you can just let us know, how did all that go? How do you think of those days? How is life now? What is easier or harder than expected with managing POTS? Anything you would love to tell us. We're just so excited to catch up.

Lily: Well, I definitely got older to start. I did graduate college and that was a really honestly surreal experience having worked since essentially eighth grade to graduate high school and then to make it through college. It kind of felt like my biggest goal in life was over, and then I was kind of left feeling all right,

now what? Because I'd spent so much of my POTS life dedicated to just graduating college, trying to make it through college. And it was both a rush of relief, and also kind of bittersweet, in the fact that [00:02:00] now I had a new goal to work for, and that I accomplished my goal, but that I didn't exactly know what to search for next, especially looking for jobs, as you are getting ready to graduate college.

Jill Brook: Yeah, I mean, I remember that being a terrifying time because it's like, oh, my gosh, now I'm supposed to know what I want to do.

Lily: I know, and you're thinking about bills, and especially with a cyber security degree, the current jobs are looking for unicorns in the field of magical wonders that apparently are fresh out of college, but have also 20 years experience or something. And so, it's kind of hard to set a goal in mind when you don't even know what the goalpost looks like.

Jill Brook: Yeah, okay, so cyber security. So that was your major in college.

Lily: Yes, I chose that major specifically because thinking about POTS, you want to have a sit down job. [00:03:00] And you, but you also want to have something you're passionate about that you can actually put forward to that, you're okay dedicating energy to because otherwise you're just not going to do it as a POTSie.

So, finding a passion that you have and trying to find a job that matches at least some of that passion, or that you could do passion projects with, or that you really do actually like the full width of the subject, but also offers accommodations towards your chronic illness. It was a really big decision that I made in college. And especially for the people out there who are,

you know, just starting freshman year, just starting sophomore year, it's okay if you don't know what that is yet. A lot of workplaces are especially more flexible now with COVID having more from home options. Just make sure that you're up front. That's what I did at my first job. On the first couple of week days,

on my first week, I went to my boss and I said, Hey, I want to let you know, [00:04:00] I have these chronically ill, here's my doctor's letter to show that proof of medical history so that they could put it in my employee form so that they know I'm not joshing them.

And,

I said, you know, I'm going to be here as much as I can be, be present.

Please understand that if I need to take a sick day or if I need to, or if I text you in the morning and say, Hey,

I really want to work, but I can't physically come, can I please telework?

That's a really good way to be open and communicative, to ensure that you have your needs met, but also that you're able to work and that they know that you're putting in the work.

Jill Brook: So, yeah, so were you nervous about whether your employer would be, you know, cool about that? Or, I mean, I guess I haven't looked into the legalities. Do they have to be cool about it by law? Or...

Lily: I mean, I definitely think there are some lines in [00:05:00] which they could toe the American with Disabilities Act, but there's also, but it can be especially hard dealing with chronic illnesses and I, disclaimer, I am not a lawyer. I don't know the legalities of all this, but in my gut, I would say there

most likely sometimes that we could toe the lines, but there are other things where they could definitely say hey no, I need you in five days a week. You know, maybe once in a blue moon you could situationally telework, but we really kind of need you in office. And especially as a young college student, just graduating, going to the workforce, you have no work experience.

You have no wisdom or skills to try and bring to the negotiation table. And so being up front, just saying, Hey, I'm going to try really hard. Show that you're eager to learn, show that you're eager to work, but also show that, Hey,

I do you these limitations can be the best option going forward because

you are [00:06:00] young, and

people look at you like, Oh, you're young, you're dumb, you might be lazy.

And you don't want to set that precedent because

that can just cause a lot of issues going forward. If you have a health scare, or if you have a flare, or you need to go to a doctor's appointment and that causes another flare, whatever. Being up front, I highly, highly advocate for that.

Jill Brook: Yeah, so what did your boss say and how has it gone?

Lily: Luckily, my boss works for the federal government, so,

but she's also really understanding and I was, I'm very lucky. And I know that's not everybody's experience. I know that that might not be your, the listener's experience right out the gate. Just understand that as long as you're open,

as long as you have that documentation down, you know, if things do get really bad, you can show, Hey, I ha I filed my doctor's letter showing my diagnosis date on the first week.

These are the emails from my [00:07:00] boss or the text messages. Like, if it gets that bad, we keep our fingers crossed that it doesn't get that bad, but there is, there is a kind of cover, cover your own skin in having that documentation early and in.

Jill Brook: So thinking ahead about that sounds smart, and I guess maybe we can back up a second because you not only started a new career and a new job, but you moved across the country. Like, I don't know how the job hunt went for you, but and then there's also just the fact that, like, when you're in college, I think your schedule's a little bit more up to you and then

starting a career, it's like, oh, boy, you got to be somewhere at a certain time. I don't know if any of those things are things that you have thoughts on.

Lily: Yeah, the job hunt was hard. I'm not going to lie. [00:08:00] Um, I applied for hundreds of different jobs, and I

got maybe like two, three interviews. Interestingly enough, I randomly went to a job fair that Wittenberg decided they would provide transportation to and that's unironically how I got my job.

I went to the job fair for Air Force Research Laboratory onto one of the tables and they're like, Hey, you might, you will probably need to move, but, would you be interested? I said yes. Lied through my teeth, because I really wanted to stay in Ohio to see, you know, balance that demandingness of a job and being able to live at home so that way you kind of ease in and if that's what that's your own personal decision, but if you feel really uncomfortable, I think that's a really good next step.

Work out with your parents, a rent situation, paying for food, groceries, [00:09:00] you know, it'll be hopefully, because they're your loving parents, they will be at a discounted rate. But that can help kind of easy when you have the safety and security of a support system right next to you being at home, but you could also mimic that a you have to be at work for eight, nine hours, you have to drive yourself.

If you really want to take it that step, you make your own meals for dinner instead of eating with your family. And that way you can kind of really see how you mesh well with the work balance, rather than doing what I did, which is honestly insane considering how well I was, graduating college. You know,

and then, just kind of ease yourself into it. See how you feel, see how you react. Learn to pace yourself. What are my limits in this new environment, in this new, more scheduled structure. Now that [00:10:00] I'm here in Florida, and not in Ohio, that went out the window, really quickly but I've found that the sunny weather has definitely helped my symptoms, so, this is most likely a permanent move, well, not most likely, it is a permanent move, going to be.

Jill Brook: Okay, that's so, that's great to know, because I would have worried that the heat would have been like a vasodilation thing, and it would have been a lot worse, but, but it's, it's always interesting because there's always, you know, more factors than you think of, and it sounds like the sun is doing more good than any heat is doing harm, and it's a net win.

Lily: Well, surprisingly, other than like, July, June, July, August, kind of September, where it's really stinking hot down here in Florida. It's otherwise mostly nice. It's sitting at 70s,

like either 70 or mid 70s sometimes, now that we're finally [00:11:00] getting into what apparently Floridians call spring. Can't tell because Palm trees are still green and at least there's not snow on the ground.

We did have a snowstorm. That was whack.

Jill Brook: All right so how did you think about and deal with moving from your, you know, your parents house in Ohio to your own home in Florida and you had to find a place and what buy furniture or, I mean, how did it all, did you, I don't know, was that a challenge?

Lily: First step in big decision where you realize that your job offer was too good enough to turn down and is now forcing you to move literally from one end of the from the north of the state that you live in to the literal south of the country you live in. First you panic, take a deep breath, then you panic some more, then you call your mom and question whether you should take the job offer [00:12:00] that's offering you enough money to move down there.

Mom in gentle words calls you silly and says take the job because drives after work, after working eight hours in the office, let me tell you, they are tiring.

They're, you want something that's close enough, that's also really close in proximity to groceries. So you want those two, because going for groceries and then walking a huge store is tiring. But you need to feed yourself, because sadly, our bodies don't run on electricity or something, because science hasn't figured that out yet.

Alas, I can't just inhale air and maybe filter feed. And then my, the best advice that my mom gave me was search for a furnished apartment.

Don't move all everything down immediately. This entire year that I'm gonna be, that I have, I'm getting, it's almost been a year now, it'll be a year in August, but we, I got a furnished apartment that I could afford on my own and this was essentially a year long test [00:13:00] run.

Let me see how I can live out throughout all the different seasons, the weather, the climate, the temperatures, the people, the traffic, and see how well I do. Because if I don't do well,

then I go to my job and I say, Hey, I'm not doing well, can I transfer to a different branch? Or, or I just start the job search again and take it as a loss because it's not what I need to maintain my health.

Luckily for me, that did not pan out in that direction, but I could have seen that panning out before, you know, when I just moved here, I could see like, maybe the heat is too much, because it was hot, very hot when we moved down here. But it turned out to really do wonders for my illness in terms of just having more sunny days and cloudy days for the barometric pressure,

so...

Jill Brook: Wow, that's great. Okay, so how are you doing with the schedule? Like what time do you have to be there? What time do you have to leave [00:14:00] for your commute? And how's that?

Lily: So I'm very spoiled, I realize when it comes to working in the public sector. We, I work what they call a compressed schedule. So we get pay periods every 2 weeks. And so I'll work 8, 9 hour days in the 1, 8 hour day. And then I get a free day off. So my first week of work during a pay period looks like 9 hours, Monday through Thursday, and then 8 hour Friday, and then.

9 hours from Monday to Thursday in the second week, and then I have a Friday off. We call that earned day off. So, I'm really lucky in having that kind of flexibility. I used to be able to telework on the first Friday of the paid period, but executive orders came down from on high and said no. But, the situational telework is still there, so that's really nice.

So, if we do [00:15:00] have a snowstorm and they're not going to force us to drive. It's more like if we have more hurricanes, which we will be soon, most likely.

Jill Brook: You got slammed with two hurricanes, I believe, right, in your first season?

Lily: Yeah, that was really interesting. So,

I'm in the panhandle, which is really nice. But there,

apparently I'm just an omen for bad weather or something, where I manage to summon, have enough strength to summon two once in a century hurricanes in the same season, which was really cool, but I'm really sorry for the people that I affected, I didn't know I had weather powers. Thankfully, they managed to tap dance their way out of where I lived, and I specifically chose an apartment that was not in the flood zone evacuation, because I didn't want to deal with that.

Jill Brook: So, you had thought

about that ahead of time.

Lily: Oh yes, I know that Florida gets a lot of [00:16:00] hurricanes, there's a lot of flooding, and so Florida, the Florida government actually does a really good job of communicating that to the residents. They have flood zones that go from

A through E, I wanna say, I know there's an A through D at least. And they have different regions that have historical flooding and they've outlined them in blocks and they say, this is evacuation zone A, B, C, D. And so

wherever your residence is, is that they call, like, for example, I'm going to use Ohio counties because I don't really know the counties down here,

let's say if we call Champaign County evacuations zone A, please consider evacuating, you know that, all right, maybe it's it's time to think about evacuating. The people who are greatest risk will most likely evacuate first, a la me, greatest risk. And then they'll they'll have shelters already ready or you'll find a hotel that's farther out from the [00:17:00] water.

And so luckily, we do have Destin, Destin as a shield. Thank you Destin for your sacrifices when it comes to hurricanes. That kind of sandbar helps really to slow down hurricanes, but we just do still get a lot of torrential rain from the usual edges of the hurricane that can cause flooding or sometimes from the very off chance we get hit.

But, it's, the evacuation, I, you guys saw the results from the other two, Hurricane Helene especially. It just slammed into us and it was a madhouse. Gas was nowhere. Medication was even harder to get for people. Like, the homes were destroyed. And it was completely an awful and humanitarian crisis.

So, especially if you're going to a place that has inclement weather,

like wildfires, that we just, that unfortunately Los Angeles has been experiencing, Palisades.

Choose a strategic place to live, is one of my pieces of advice. That's [00:18:00] what I did, because if they're calling for evacuation zone A, in a place that's kinda like, not near me, but kinda near me, I'm already thinking, alright, maybe write my doctor, get an advance on all my medications, have that ready, put that in my to go bag.

If we need to get out of here, we've already got an evacuation plan done, we've got rations. If we need to sit it out, then we go. Because, medication especially, is very hard to get in a crisis.

Jill Brook: I think that's really smart. And I would second that. I, I do live in a place where wildfires are a big deal pretty much every summer. And I learned the hard way that if you wait to deal with it once it's an emergency, then especially with like, the POTS and the related conditions, that is such a nightmare.

Lily: If you can just get out ahead of it and have a plan before it's an issue. Oh, man, is that a lot better.

And especially just the stress it puts on your system. I'm a person of routine. My, my body starts going haywire when [00:19:00] it adds adrenaline, or stress, to a situation, of known unknowns, is what I call them.

Lily: And, that doesn't make you feel better, it just makes you feel worse. So, get out while the going is good. On the first warning call, don't, don't wait until you're, you know, in the final quarter. And then you're like, oh, I'm in trouble. Maybe I should leave now.

Jill Brook: Now, I'm curious to hear about another angle of adulting, which is feeding yourself. And you know, I'm retired now, but as a nutritionist, I watched my whole career that like people who are in perfect health still are too tired to prepare decent meals for themselves. And so how did that go? Like, do you have a routine around that?

Or how do you make it so that you, you know, haven't wasted away?

Lily: Well, I did luck out. My partner did come down about two weeks after I moved and [00:20:00] took over cooking meals. So...

Jill Brook: Oh.

Lily: But I did, I was solo for about a good two weeks. And so what I did was didn't let myself rest. My problem is, is that once you come home from work and you rest, it's game over. Your body is done, it is not willing to put up with anything more you're willing to put it through. It is saying, stop, what are you doing, I don't care anymore.

It dies. So what I would do is, is I would literally cook in my work clothes.

Right after I got home.

I grabbed myself a drink of electrolytes and then immediately start cooking. And you want to choose meals that are healthily balanced, while having enough protein to get you through the day, because that's what I have realized is what I really need.

If I don't have a lot of protein in my diet, I start fading really fast. But also making [00:21:00] sure that when you cook the meal, you have enough for lunch. So, you don't even have to worry about packing your lunch in the first place, you just take the container of your leftover meal, chuck it in your lunchbox, chuck a fork in there, call it a day.

Jill Brook: Yeah, okay, so you kind of like, you don't let yourself rest until all that's done because then you can crash and really crash.

Lily: Yeah.

I've trained,

I've low key Pavlov'd myself into having set mindsets for when I need to have my energy turned on and I need to be present and I need to be working. And I do that through the place where I'm sitting and also the clothes that I'm wearing. So if I when I put on my work clothes I'm in the mindset of a right I'm getting ready to work, let me start thinking about what I need to do today. Start making a list, mental list in my head and then I drive and then when I'm at work I'm at work.

I am there, I'm ready, so that I can make my money, [00:22:00] and they continue paying me. And then I come home, and I'm still kind of in that mindset. Yes, I'm still tired, but if I'm still in that work mindset of putting my energy somewhere. And so I channel that energy into cooking and then I eat and then I can crash a little bit, but I still want to eat my work clothes because I still have the dishes to do.

Jill Brook: Okay.

Lily: After that, then I can change into my PJs and PJs or taking a shower in the evening and saying, Hey, all right, now you can relax. And then we crash.

Jill Brook: Wow, that sounds just so smart. So did you just figure this out yourself?

Lily: This is what I did for school. I just, I have figured out that this works for me. So, this is what I would do in college is where, if I put on day clothes, that's right, it's time to be a student, it's time to learn. Then I go to work, or I go to school, and I learn, and then I come home, and then after all [00:23:00] my classes were done in college, I would change that dichotomy, where I would work, because I had a desk in my room, if I was sitting at the desk, I had to work, and if I was, but if I was on my bed, I was either resting or sleeping, and that way you're not mixing, I have found that I have trouble if I mix working on the bed and sleeping on the bed.

Because my brain is confused and it's like, all right, all right, are we working and are we awake or are we sleeping and going to sleep. And I found that I just can't do that anymore.

Jill Brook: Wow, that's really smart because I imagine that if you make that your routine, then after a while your brain starts to adapt to it and it's less difficult to turn on or turn off.

Lily: Weekends, especially for like, cleaning, cooking, to convince yourself to do that. And so...

Jill Brook: Do you have any other sort of routine [00:24:00] things that help keep you going? Like, are you strict about bedtimes or anything else?

Lily: I'm working towards that, actually. I've been really bad, but I've set an alarm for my evening meds because unfortunately, I don't sleep unless I have my evening meds in, and that takes about an hour to kick in, so I take them an hour before I go to bed, and I just have an alarm on my phone, and I'm Pavloving myself right now to where I hear that alarm, and I just take the meds. Because sometimes, well, we're all human, we're very forgetful, and, or sometimes you're feeling rebellious and don't want to take your meds, even though you know they help you.

You just want to have some semblance of control once in a while. You're like, all right, I'm going to be in control. I'm going to do the thing that hurts me. Yay.

Jill Brook: So I've heard you use this term a couple times. I like it. Pavloving yourself. Do you want to explain that to people who didn't maybe take Psych 101?

Lily: So Pavlov was a scientist and he had these [00:25:00] dogs and he gave them treats when he rang the bell. And they would start salivating because they knew they were going to get food. So, and then he gave him the treat. So anytime they heard the bell they knew that they were going to get the treat after a set amount of time, this behavior started to become trained to the sound of the bell.

And so Pavlov could ring the bell and the dog would start salivating, but he wouldn't give them the treat. But the reaction was still there, and so I'm trying to train myself so that when I hear a certain noise or if I'm in certain clothes or in a certain area, that I'm more likely to do the actions that I want to be doing.

And it just seems more natural that way. It seems more like a habit. Rather than, Ugh, I have to make food again. I could just order DoorDash. Because while that's, that's fine, and while it's fine in a blue, once in a blue moon, that's also very expensive on the wallet given prices today.[00:26:00]

Jill Brook: I think that is just brilliant. I used to talk about routines a lot in the nutrition world for exactly that reason, that once something is on autopilot, not only does it take the thinking out of it, but it takes the emotion out of it. And for a lot of things, that's the win. So you're not always like, Oh, I have to do this or just make it

automatic.

Lily: The nice thing is you don't spend energy on thinking, you just do it.

Jill Brook: Yeah. Yeah. Okay. What else is either easier than you expected it to be or harder than you expected it to be while managing POTS?

Lily: I think the hardest part is my end of day. So, I knew it was going to be hard, but I didn't realize it was that hard. I actually have a longer drive than usual, just based on where I work, and so I get really run down at the end of the day, especially since I'm working mostly nine hour days. [00:27:00] And I found that drinking a lot at the end of the day before leaving really helps, because of course you're foggy, you're tired.

I don't know about everybody else's traffic, but Florida traffic especially, we're crazy down here. They're crazy drivers. We have a lot of people from out of state that come to visit us, and they drive, and then we have the resident Floridians who drive 15 miles over the speed limit because the speed limit posted is just a suggestion.

And so you're dealing with everybody running around, and I'm, I just learned how to drive

last summer. So, right before I kind of came to this job. Really, so I've not been driving long. It stresses me out. So, just having, making sure that you take some electrolyte drinks, take a snack if you're, always make sure you have a snack with you

just in case. Because you never know at the end of the day when you're gonna need that little boost to make sure that you get home safe. [00:28:00] And if you don't get home safe, there have been a couple of times where I've considered calling my partner and just having him pick me up because I know I'm kind of on the edge of being safe to drive home.

If you're not safe to drive home,

call a friend. Call a parent if you're close. Better to take yourself off the road and make it home alive than try to play the odds and end up rolling, you know, snake eyes or something.

Jill Brook: For sure, yeah, yeah. Yeah. That's really good advice. What about things like running errands and doing chores? When, when do you take care of that? Do you strategize around that?

Lily: Usually, chores are done on the weekend. Especially considering that we don't have a dishwasher. Find yourself a nice stool. Sit on the stool, and then wash the dishes and everything so you don't have to stand. That has actually been a lifesaver.

And then, the cleaning, just do it as you go. Try to keep it clean. [00:29:00] Don't look at the apartment. I'm not going to turn the camera around because I'm a very bad example of what I just said. In theory, I was for the first two weeks of the apartment, and then work got in the way.

I also think that, especially if you're on your own, I know that a lot of people value their quiet time, their silence, to be just kind of

relaxed and de stressed in a non noisy environment where you're not being stimulating.

Consider getting yourself a really small apartment. Get a small furnished apartment, smaller space, less stuff to take care of, less space to clean. And that way, if you have company over, you're like, Oh, my space is small, I can only invite a few friends over, I'm not gonna have a big shindig at the party that my friends are gonna volun tell me to to do to do.

You

know? It's it's the sneaky things, like that. You can still have your friends over, but then it's just small enough space it gets cramped after a while, and you're like, alright, time to wrap it up. And then everybody goes home. You're happy you've had friends over and visited them.

You're also [00:30:00] happy they left within two, three hours, and now you can rest again.

Jill Brook: Yeah. Yeah. So, so feel free to tell me if, if this is prying too much, but like, is there any strategy or advice around, like you come home at the end of the day, you've worked nine hours plus you've commuted, you're tired, but your partner, presumably still, might like some time with you. So how do you make energy for your significant other when you're having to spend so much on your career?

Lily: It's doing the little things. We've developed a routine where dinner is, he he usually has dinner ready by the time I get home. Thank you, by the way. And,

yeah, shoutout to my partner. He's really carrying the weight. But we usually just eat dinner and watch a YouTube together, or a show together. And that's a really nice way [00:31:00] because I, I'm making sure that I'm eating, because I'm eating with other people. If I was on my own, and if I didn't have my routine of making dinner set up, all bets are off.

But it's, it's watching that TV show together after dinner. It's sitting down to talk about your day, ask questions about their day. If they're still cooking

or it's asking, Hey, do you need help with the dishes afterwards?

It's the little gestures. And then of course we've set aside, we've haven't really scheduled like, Oh, it's going to be 1 PM on Saturday, but we've scheduled that one of the weekend days we're going to have a date day. Chill out. Even if I can't always be present during the week, I can be present during the weekend.

We'll play games, or we'll talk, or we'll laugh at YouTube, or the show we're watching, and that's how we maintain.

Jill Brook: [00:32:00] That's fantastic. I mean, it seems like, like things are working out.

Lily: Yeah.

Jill Brook: Are you proud of yourself? I mean, like, did you have to learn to drive so that you could take this job?

Lily: I had to learn to drive so that I could take any job. It's kind of, depending on what role of cybersecurity you have, it's not feasible to do it completely remote. Well, mostly. I think that's most cyber security, so, yeah. I just had to learn to drive so that, but it's also not even that. It's so that I can get groceries. It's so that I can go to the doctor's appointments.

It's so that I had a method in case of, in the case of Florida, to evacuate myself.

Jill Brook: Because yeah, these are a lot of leaps of independence from where you were not that long ago

in [00:33:00] college.

Lily: Yeah, there are definitely leaps or more like Grand Canyon cliffs. But yes, they have been big changes. I'm still trying to sort out the best routines for myself. It's not easy, it's not, you're not gonna get it on the first try, or the second try, or even the third. It's still gonna be a, it's a continuously evolving process.

Jill Brook: So I know this is like, one of your precious free days. So I'm going to let you go in just a second, but did you have to find a new doctor in Florida? Or are you able to still use... oh, you're giving me body language like this, this one thing maybe isn't coming easy

as I imagine.

Lily: Prescription laws and the legalities of it meant that I did have to change doctors. For anybody who's moving,

especially if you're starting a new job,

learn the new jobs insurance and get on it as fast as you can. And then, while that is happening, make sure that you have copy make sure you have [00:34:00] a signed doctor's letter,

and if you take any scheduled prescriptions, make sure you go to your current primary care provider, say, hey, write me scripts for three months out, so that you have it with you when you travel. Because it is not a guarantee on the first try, you will find a doctor willing to prescribe you what's most likely, for POTS at least, off label medication.

Jill Brook: Well, that's really important.

Lily: Or whose admin is competent enough to make sure that everything's sorted out. Like, there could be scheduling issues, the doctor might not be able to take new patients, the admin I have gotten a kerfuffle in the system, and it's not there for, or whatever. There are so many things that can go wrong when switching doctor's offices, so making sure that you have that backup plan.

Make sure that, make sure that you refill all of your non scheduled prescriptions as close to your leave date before you go.

[00:35:00] And the next piece of advice that I give that my mom told me to do, visit all of your get a checkup at every place that you go to.

Check your eyes with your regular eye doctor. Go to the dentist before you leave. Have a physical and well care done at your original primary care practice before you leave. Do any car work if you're driving down there before you go. Make sure your car is tuned up for the drive down so that you don't experience any road problems on the way.

Have all of that kind of done and ready. And then of course, any copies of blood tests or whatever past medical history, make sure you have that binder or wherever you keep that information with you as well, because that's really going to help move you forward in finding that next doctor for you.

Jill Brook: That's such good advice. That's so smart. And, you know, I was just thinking about how since you are in Florida, we had a podcast episode recently with Danielle Lazerowicz [00:36:00] and two physicians. She was a patient who started Cronius Health, which their tagline is Primary Care Without the Gaslighting, and they are taking a lot of different insurance plans in Florida.

I know they're looking to grow to other states, but they specialize in helping people with complex chronic illness, coordinate their care. So I was just going to bring them up again in case they are on your insurance plan and an option for you.

So Lily, thank you so much. Are there any final words that you would pass on to people? It sounds like you have had to do a lot more than planned and you prepared for it masterfully. And I'm glad that you admitted that you panicked a couple times because I think that's good for people to hear. Like, that's just part of a healthy [00:37:00] process and I mean, I'm just, I'm like, I'm so proud.

I don't know. It just seems like you're doing so well in every area and you've overcome some really big challenges.

Lily: My biggest advice is think if you have regrets. I took this job because I felt that I would regret, at the end of the day in my heart of hearts, that I regret not accepting this opportunity. And even though it was really scary, I had a really great support system and my mom and you and my family and my friends and my partner that supported me through that journey and moving down here.

So if you feel like in your heart of hearts you would regret not making that decision, I say go for it. It might not have the greatest outcome, but there's also the flip side where it could be the best thing that you ever experience. And it's so hard to find something that you're willing to chase that hard for in POTS, especially because we're so [00:38:00] energy deficient, that it's okay to see that by your two hands, yank the star down from the sky and hold onto it for as long as you can.

Jill Brook: Beautiful. I love it, we'll end it there. Lily, thanks a million, all the best to you and your partner and and we'll, we'll keep checking in on you occasionally if that's okay.

Lily: Sounds good!

Jill Brook: Okay, awesome. Alright 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.