Episode Transcript
Diary with Emily
[00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host. And today we have an episode of the POTS Diaries with Emily. Emily, thank you so much for being here today.
[00:00:13] Emily: Thank you for having me.
[00:00:14] Jill Brook: Okay. So we are excited to get to know you. How old are you and where are you?
[00:00:19] Emily: I'm years old and I currently live in Washington State.
[00:00:23] Jill Brook: Where in Washington state?
[00:00:25] Emily: I live in the boring Tri Cities, a very dry desert and it gets really hot.
[00:00:31] Jill Brook: Wait, so you don't live in a place where it's like rainy and cloudy all the time.
[00:00:36] Emily: I wish! I'm originally from Oregon and I love the rain, I love the green, I love the trees, but no, I live in a dry desert.
[00:00:45] Jill Brook: Okay. Okay. Okay. And how would your friends or family describe your personality?
[00:00:50] Emily: probably goofy, a little bit shy. Patience caring, a little bit stubborn in there.
[00:00:59] Jill Brook: Okay. And what are you good at?
[00:01:02] Emily: I've recently taken up cooking.
[00:01:04] Jill Brook: What do you like to cook?
[00:01:06] Emily: I love to cook lasagna. I've been learning to try to make ratatouille. Didn't turn out great this last time, but I'll get there, anything really.
[00:01:17] Jill Brook: Very cool. Okay. What else do you like to do besides cook?
[00:01:20] Emily: I've been taking up sewing recently and making handmade cat and dog toys.
[00:01:26] Jill Brook: Oh, neat. Do you have a cat or a dog?
[00:01:30] Emily: have two cats and then I have my mom's dogs come over quite a bit.
[00:01:34] Jill Brook: Oh, and so you have homemade presents for them?
[00:01:37] Emily: Yes, I do
[00:01:38] Jill Brook: Oh my gosh. That's so nice. But then do they destroy them?
[00:01:42] Emily: You know my cats will they're only one and then the dogs they're older so they've kind of mellowed out a little bit.
[00:01:50] Jill Brook: Okay. That's super nice. Okay. Okay. I'm gonna throw in a new question. What is the most fun thing you've ever done in your life so far?
[00:01:58] Emily: Oh, I've been to Australia. I love traveling and when I turned 18 and graduated high school My grandma who was a big traveler been out all over the world took me to Australia, which was my dream since a little girl.
[00:02:11] Jill Brook: Oh my gosh that sounds amazing. Okay, so how old were you when POTS showed up in your life and what did your life look like at that time?
[00:02:21] Emily: I was 24. So I'm a little less than a year ago now, I was working full time as a certified medical assistant at an urgent care.
[00:02:31] Jill Brook: Okay, so what was that like?
[00:02:33] Emily: Before all of this, I loved working in the medical scenery, and I loved connecting with my patients, everything about it really. I'm sorry, I forgot the question.
[00:02:43] Jill Brook: Yeah, no worries. So what was it like being a medical assistant at Urgent Care?
[00:02:48] Emily: Okay it was good
[00:02:50] Jill Brook: Because it seems to me that you're probably like seeing a bunch of people when they are so stressed out.
[00:02:56] Emily: yes they are. It was it was interesting I had worked previously in a whole bunch of different areas where it wasn't 12 hour shifts it was just a normal like eight to five kind of job so it was a big change and People do come in stressed, but I understand that.
They don't feel good. They're just trying to get help. The healthcare system has changed a lot over the years. It's very hard to get good quality care. So I could understand why.
[00:03:24] Jill Brook: Yeah, so what was your first sign that POTS was coming into your life?
[00:03:29] Emily: I was very fatigued, migraines. I had some fainting spells, stuff that was just out of the ordinary for me.
[00:03:38] Jill Brook: What did you think was happening? Did you know?
[00:03:40] Emily: I didn't know, I knew of POTS, but I didn't know that's what was going on.. I went to the ER a couple times. I was calling out of work quite a bit. I would be in there with my patients and get total brain fog and I
[00:04:04] Jill Brook: couldn't remember what they said.
So did it help that you were in an urgent care clinic? Like did anyone recognize it in you or was it still a bit of an ordeal to get a diagnosis?
[00:04:12] Emily: It's still hard to get a diagnosis. I didn't love asking for help from the people I worked with. I kind of wanted to keep my stuff private. It was kind of embarrassing. You could definitely tell, though, I was kind of swaying a little bit. I ended up going on medical leave for a couple months just because I couldn't keep up. Calling out, and I was scared I was going to lose my job.
Yeah.
[00:04:31] Jill Brook: Yeah, you mentioned passing out a couple times. Anything dramatic?
[00:04:37] Emily: Nothing too dramatic. Most of this happened at my own apartment, which I live alone. I hit my head once really hard on my bathroom counter and that hurt quite a bit. I thought maybe a concussion. I had a little bit of a bruise going on, nothing major. I waited a day and I was like, I gotta go to Urgent Care.
So I actually went to, it's not the clinic I worked at, but it's like a chain of it. And I knew some of the providers there and I ended up going there to get checked out.
[00:05:03] Jill Brook: Okay. Okay. So how long did it take to get a diagnosis?
[00:05:08] Emily: Probably about seven or eight months. I can't quite remember. It's kind of all foggy. But I actually ended up going to a naturopath that was recommended to me by one of my fellow friends. He's a PA, and he's the one that was actually the one that diagnosed me. And then this month, I got a backup diagnosis by a neurologist.
[00:05:29] Jill Brook: Okay, so did you ever have to go through a it's all in your head phase? Were you worried about that?
[00:05:35] Emily: Oh yeah, I think my mom and dad got more mad about it than I was, but there definitely was, it's, I never got told directly, you know, it's all in your head, but it was very dismissive. I probably saw about seven or eight different specialists, just referral after referral, one of the doctors, I actually had a, I think it's called a poor man's table test with my naturopath, he wrote it down, and you could see that it was from him, and I had a doctor tell me that didn't happen.
[00:06:02] Jill Brook: Oh my!
[00:06:04] Emily: Yeah,
[00:06:04] Jill Brook: Yeah Okay. Well So, before you had your diagnosis or after, what were your worst symptoms?
[00:06:12] Emily: I would definitely say the migraines. I had horrible migraines. I had like this rapid heart palpitations kind of thing going on. The foggy brain can be quite annoying. i know it's not like the dangerous part but it can be quite annoying.
[00:06:27] Jill Brook: Yeah.
[00:06:28] Emily: and the fainting was not great.
[00:06:31] Jill Brook: So I have recently realized it can be fun to hear how different people describe migraines. Do you mind describing your migraines for us?
[00:06:38] Emily: Let's see here. i feel like it's always on my right side. And it's like in the front, it's not in the back, it's like this excruciating, like, sharp pain, and like very light sensitive, sound sensitive, I almost can't get out of bed, it's just so horrible.
[00:06:55] Jill Brook: Oh,
[00:06:56] Emily: it's like, I don't know, like a hammer like knocking on your head, and you kind of just wish someone could like take your brain out and give you like a few seconds of rest kind of thing.
[00:07:04] Jill Brook: I'm so sorry, but see, that was interesting to hear how
[00:07:07] Emily: yeah, I'm
[00:07:07] Jill Brook: describe
[00:07:09] Emily: to be very descriptive here.
[00:07:10] Jill Brook: Oh my goodness. Okay. So any other worst symptoms? Because then I want to move on to how much better are you now, but anything else to say?
[00:07:20] Emily: I mean I have quite a few symptoms describing them to my doctors you kind of feel crazy because you just keep listing like this and this and this and they're kind of just like you don't really have all those and I'm like no I really do. Maybe not at the same time but a different areas in some kind of way, it does happen. But the ones I told you are probably the most severe.
[00:07:40] Jill Brook: Okay. So once you had a diagnosis, how much were you able to get good treatments?
[00:07:47] Emily: It's been good. My last two doctors I've seen, which is the naturopath and the neurologist, have been absolutely amazing. They believed me. I honestly don't know what I would've done without them. 'cause every other person I saw was just very dismissive and It's been good, it's been still a journey, I'm still working to get better, but I have had a few tips and that's helped me a lot.
[00:08:08] Jill Brook: Oh, good. Okay. If you were to rate your functionality at your worst and then rate it again now, what would you say? Where was your low point and where are you now?
[00:08:19] Emily: My low point, like, you want it on like a scale? Like of how bad it was?
[00:08:23] Jill Brook: Yeah. Like from zero to a hundred, how functional were you at your worst and how functional are you now?
[00:08:29] Emily: Well, if 100 was the worst, then I probably, my worst time was around... An 80. It was, to me it felt awful. . I'm also kind of a pansy, so it could have been kind of that too and now it just kind of varies day to day, because sometimes I feel great, like the whole day I do, I do awesome. Maybe around three o'clock I start dropping, but most of the day I'll do good.
But then other days it's like I'm non-functional in bed. Don't ask for help Yeah.
[00:08:57] Jill Brook: Yeah. So has this affected your work in your career.
[00:09:02] Emily: Yeah. I'm currently not working. I ended up did get let go because it was kind of, I guess like a mutual agreement. 'cause I felt bad for leaving my workmates you know alone a lot and they needed someone that's with consistency and I didn't know what's going on at that time and so I was let go and right now it's just not plausible for me to work but I'm getting there.
[00:09:25] Jill Brook: Oh, good. So you think you'll be back at something that's a similar to your old career or would you go for something different? 12 hour shifts sounds really grueling.
[00:09:34] Emily: yeah something a little bit different probably. I think about going back to school at some point But medical assisting is just you're constantly up on your feet, and it's hard for me to personally stand up for long periods of times before my pulse starts going skyrocketing, so probably something different.
[00:09:51] Jill Brook: So are there things that you have to do every day to try to feel good?
[00:09:55] Emily: Every day, I drink about four waters, and that could be mixed with, like, an electrolyte drink, like Fentropal or liquid IV, but I make sure to get at least three to four in, and staying hydrated really helps me, and eating small, salty snacks throughout the day.
[00:10:11] Jill Brook: Are there any other treatments that make a really big difference for you?
[00:10:14] Emily: Nothing that I've tried, I've been given like a tip to, like when your heart is racing and you feel like your pulse is, you know, going through the roof, to put an ice pack on your chest and lay down, and that doesn't seem to really help me personally, but I do know it helps a lot of people.
[00:10:30] Jill Brook: So what is the biggest life change that you've made because of POTS?
[00:10:34] Emily: don't know, I've kept a lot of things the same, I'm just trying to work around it, I mean, obviously, I... you know try to diet well. No caffeine. i already didn't smoke but you know none of that. So yeah that's about it i don't make a whole bunch of changes
[00:10:50] Jill Brook: Mm-hmm. . Do you think that this has changed you very much as a person?
[00:10:54] Emily: Maybe not so much as like a person, but medical field, I see a lot different now. If I ever went back in, there would be, I was already pretty patient that I thought of, but there would be so much more compassion and care there. Like, it's just can be so frustrating to get a diagnosis and I know a lot of people don't get told straight up, you know, you're crazy, you know, it's all in your head, but just being like kind of hinted towards that. It's really hurtful. Yeah,
[00:11:20] Jill Brook: What's the hardest thing about living with POTS?
[00:11:24] Emily: just constantly being tired, not feeling well. Trying to not feel like a burden to your friends and family. It, it can just get a little bit tiring after a while.
[00:11:33] Jill Brook: What can people do that helps you the most or gives you the best support?
[00:11:37] Emily: I think just being patient with me, you know, sometimes, like I said, I don't feel good and some days I don't, so people will see me doing really good and be like, oh, she's all better. And then be surprised the next day where I'm like non functional. So just kind of be patient, kind of come from an understanding place and we'll be good.
[00:11:54] Jill Brook: Is there anything that you know now about living with POTS that you wish you had known sooner?
[00:12:00] Emily: Nothing that I can think of off the top of my head. Like I said, I already kind of knew the basics about it. I guess if I had to say something, symptoms can show differently with everyone. It's not necessarily the same thing. It's not always your pulse is going to be through the roof. It can come in different forms.
[00:12:15] Jill Brook: Had you ever seen POTS in your days when you worked at the urgent care?
[00:12:19] Emily: I would see people that have already had a diagnosis come in with it, but I've never fully worked one on one with it, if that makes sense. Like, I never worked diagnosing it with my doctors.
[00:12:30] Jill Brook: Mm hmm. Yeah, because I was going to say, I wonder if it would be interesting kind of looking back at how differently it presents in different people.
[00:12:39] Emily: Yeah, I think that would be an interesting thing to see.
[00:12:42] Jill Brook: Yeah. Do you have any kind of words you live by or mantras that help you deal with all this stuff?
[00:12:52] Emily: I do, I have this quote that I absolutely love, and it is basically I want to be like a sunflower. So even in the darkest of days, I can stand strong. And I just love that.
[00:13:03] Jill Brook: Nice. Do you have any coping strategies that you use or is there anything that you look to to give you strength for dealing with all of this?
[00:13:13] Emily: My mom has been my biggest supporter. She's my strength through all of this. She's gone to almost every doctor's appointment with me because there's a point that I was just scared almost of doctors, which is kind of funny because I worked in the medical field, but after a while being told so many times that you're crazy, you're wrong, or dismissive, I was getting scared.
It was giving me so much anxiety. And my mom went with me to every single one. She was my advocate. She takes care of me on the days I don't feel well. Yeah, I would say she's been my strength through all this.
[00:13:41] Jill Brook: So that's really interesting that you say that. So here you had a career working side by side with doctors in urgent care and presumably they were your colleagues, your friends, your co workers. You were pretty comfortable around them. And then within a few months of becoming a patient with something that maybe they didn't... Always understand completely. It made you feel super kind of anxious around them.
[00:14:08] Emily: Not necessarily around them because I didn't tell them. They knew something was going on, but I didn't give them like. I was fainting, I was, you know,
[00:14:16] Jill Brook: And I guess I'm referring to like doctors in general, not necessarily your coworkers, but just sort of, you had mentioned that it had become, and I don't know if anxious is the right word, but it had
[00:14:25] Emily: extremely anxious around them. I was like, mom, I don't wanna go. They're just gonna tell me I'm crazy again, or they're gonna be dismissive, or I'm just gonna get the referral out. I don't wanna go. And she's like, well, it's up to you, but let's give this one more try. I'll go with you and I'll help be your advocate.
I've seen you go through all of this. But yeah, I was, I'm getting super anxious going to doctors.
[00:14:47] Jill Brook: wow. That's just amazing to me though, because you had worked side by side with them up until then. Do you mind just talking a little bit more about how you saw doctors before POTS and then how you saw doctors after POTS?
[00:15:00] Emily: Yeah,
[00:15:01] Jill Brook: and maybe how you see them now?
[00:15:03] Emily: yeah it's hard to say how I felt about doctors in general because sometimes you get those really nice doctors that you work with and they really care about their patients and all they want to be there is to help and be an advocate. And then you have those ones that just aren't great, that just want to kind of bring in the money just get them in and out.
Those were the worst ones to work with. I'm obviously not going to say any names, but it's hard to like put a definition on all doctors.
[00:15:32] Jill Brook: Yeah,
[00:15:32] Emily: But after I just, I hadn't met one doctor that was nice to me, honestly, like they would just dismiss me all the time or tell me, you know, maybe it's a bug. You'll go give it a few weeks or just go to the ER. We can't do anything for you. And it just made me really anxious and I didn't see them in the best way, to be honest.
[00:15:52] Jill Brook: yeah, yeah. Now that you have a diagnosis, does it help?
[00:15:58] Emily: I wouldn't say it helps overall. So I told you that I saw the naturopath that was recommended to me by a family friend who was a physician's assistant, and I trust him a lot. So I went to go see him. He helped a lot. And then I got a referral to go see a neurologist that took me about four months to get, 'cause you know, they're really busy prioritizing.
Totally understand. And I was like, mom, I don't even know if it's worth it to go see him. And she was like, it's up to you. I went to see him and he was great. He was wonderful. He believed me. He, you know, did his own little tests. Totally agreed with the diagnosis and he was wonderful. So I think it's just gonna be a, you know, one-on-one kind of situation where I just have to kind of see when I see them.
Yeah.
[00:16:38] Jill Brook: Yeah, yeah. Has anything positive at all come from having POTS? Any silver linings?
[00:16:47] Emily: I don't know, maybe I've been coming a lot closer with my mom. We've always been close, but this has really brought us closer together. My whole family is really supportive, but my mom's been the one that's been by me. And like I said, I have a lot more compassion for people who don't necessarily have an illness that you can see. It's because you never know people won't necessarily see me and be like oh, you know she has POTS So I think that it's kind of a silver lining coming out of it.
[00:17:14] Jill Brook: Have you told friends?
[00:17:16] Emily: I told Two of my closest friends, but I don't know I just don't love to announce it to people I meet unless if it's have to know kind of basis, but
[00:17:26] Jill Brook: Yeah. Are you up for doing a speed round where you just say the first thing that comes to your mind?
[00:17:33] Emily: sure yeah.
[00:17:34] Jill Brook: What is the drink you find the most hydrating?
[00:17:37] Emily: Any
[00:17:38] Jill Brook: What is your favorite time of the day and why?
[00:17:43] Emily: Anytime after 6, I'm a night owl, so it's just relaxing.
[00:17:47] Jill Brook: How late do you stay up?
[00:17:49] Emily: it kind of depends, because also I have a really hard time sleeping sometimes, especially if I don't feel well. So sometimes I could be up until like 3 or 4 a. m., but it's not always that case.
[00:17:59] Jill Brook: Okay. So where is your favorite place to spend time and why?
[00:18:03] Emily: I love just going outside anytime, anywhere really, as long as it's not, you know, gross. But going for a walk by my house, love it. Fresh air.
[00:18:12] Jill Brook: How many other POTS patients have you ever met face to face?
[00:18:16] Emily: I've actually met zero so far.
[00:18:18] Jill Brook: What is one word that describes what it's like living with a chronic illness?
[00:18:24] Emily: Tiring.
[00:18:25] Jill Brook: What is some good advice you try to live by?
[00:18:28] Emily: Be yourself. Sometimes you feel like, what if I was this different person? It wouldn't be like that, but just be yourself and be proud of who you are.
[00:18:37] Jill Brook: What is something small or inexpensive that brings you comfort or joy?
[00:18:42] Emily: My pets.
[00:18:43] Jill Brook: Who is somebody that you admire?
[00:18:45] Emily: My whole family, really, but my mom and dad.
[00:18:48] Jill Brook: Do you want to say why?
[00:18:51] Emily: Well, my dad's just, he's always there for me. I can just ring him up and he's like coming over, ready to help. He's like my hero. And then my mom is my biggest supporter, too, so.
[00:19:03] Jill Brook: Oh, yay. Okay. What's your favorite food?
[00:19:07] Emily: I love anything really Mexican or Italian.
[00:19:11] Jill Brook: What is something you're proud of?
[00:19:13] Emily: proud of how far I've come in this journey because I was very depressed at one point, so I'm proud of getting out of that little bubble.
[00:19:23] Jill Brook: Did you have any particular strategies that helped you get out of that bubble? Or was it just time?
[00:19:28] Emily: I honestly think it was just time. There was nothing that could really pull me out of it besides just... Give me some time. And honestly, after I got the diagnosis, was a big relief too so.
[00:19:40] Jill Brook: Yeah. What's an activity that you can enjoy even when you're feeling really POTSie?
[00:19:46] Emily: I can sew pretty well, cause it's sitting down and relaxing.
[00:19:51] Jill Brook: Okay. What helps you fall asleep, if anything?
[00:19:55] Emily: I like listening to YouTube and podcasts.
[00:19:57] Jill Brook: What gives you energy when you need it?
[00:20:00] Emily: I don't know if anything can really gimme energy when I need it. . If I'm outta energy then I'm out
[00:20:06] Jill Brook: Sure enough. What is a gift that you would have sent to every POTS patient on earth if you had infinite funds?
[00:20:13] Emily: If I have infinite funds, it would be helping with medical bills. It gets super expensive, and you tend to see a lot of doctors when you're in the process of getting diagnosed. So definitely medical bills.
[00:20:24] Jill Brook: Yeah. What is something you are grateful for?
[00:20:28] Emily: I'm grateful for the support of my family and friends.
[00:20:31] Jill Brook: Okay. Can you finish these sentences? I love it when ...
[00:20:35] Emily: and friends. It's raining.
[00:20:38] Jill Brook: I hate it? When ...
[00:20:40] Emily: It's 114 degrees out.
[00:20:43] Jill Brook: People might suspect I'm a POTSie when ...
[00:20:47] Emily: they want to hang out and I'm in bed all day.
[00:20:50] Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was it?
[00:20:57] Emily: Yes, my sister and I were walking at the park, and I started getting really dizzy, and my heart was racing, so I sat right down in the middle of the path, and she took my pulse for me, and we just waited it out.
[00:21:12] Jill Brook: Nice. Okay, I just have a couple more questions. What do you wish more people knew about POTS?
[00:21:19] Emily: That it can show up in different ways, it's not all just one physical way.
[00:21:25] Jill Brook: Is there anything you wanna say to your fellow POTS patients out there listening?
[00:21:29] Emily: Something that's really helped me is finding a community, finding Facebook groups, finding people that understand what you're going through. That's something that I would recommend for everyone.
[00:21:40] Jill Brook: Yeah, and why did you let us share your story today?
[00:21:44] Emily: I just want to show people that it can get better, and even if you're in a hard time at this moment, that there's people around you that support you through it.
[00:21:54] Jill Brook: Oh, that's beautiful. Well, thank you so much, Emily. I know that everybody is sending really, really good vibes your way, and we're just really grateful for your story and your insights.
[00:22:05] Emily: Thank you so much for having me.
[00:22:07] Jill Brook: Okay, listeners, hope you enjoyed today's conversation. 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.
