The Dysunderstood Podcast

Season 2 Episode 3: Olgas’s Story Transcript

Welcome to the Dysunderstood podcast. I'm your host Ella Eastin.

if at any time, obviously, unwell or need to take a pause, let me know. Um, we have an hour to sell

pills and my medicine. So I'm hoping that

Before we jump into the episode, just a note about our really important partner living with orthostatic intolerance and dysautonomia comes with its own set of challenges.

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Head to the notes of the episode to be able to find the discount code to save on these awesome compression socks. Joining us today is Olga Flores from Los Angeles. After a seven year journey to find answers to explain her symptoms, she was diagnosed with POTS in 2021. As a wife and a mom of two, she's balancing parenthood, chronic illness, and a career from home.

Despite POTS taking so much from her, Olga has fought to reclaim her life, going from months of immobility to working out regularly with the help of medication, lifestyle changes, and mobility aids. She's here to share her journey of slowly regaining her power. Olga has come so far, and I really appreciate her openness about her experiences as a parent with POTS.

Her struggles really have shaped her strength, and I'm excited for you to hear all about it. Well, um, it is so wonderful to see you again, Olga. Thank you for joining me and spending your, your time and energy with me this morning. Um, I'm very excited to hear from you, um, ever since we, we last talked, uh, for our listeners, um, they can go back and read your story that we have on the Disunderstood blog, um, that you shared.

Almost two years ago now, um, maybe a year and a half, but, um, we'll, we'll talk about that kind of debrief about how things have changed. Um, and they also can listen to. Um, your, uh, wonderful panel that we had at the Disunderstood, um, conference last year. Um, and I think that a lot of great takeaways from even that short amount of time.

So those are two things that I will link in the, the podcast description. Um, but first I just wanted to say thank you again for joining me. Uh, thanks for having me. I appreciate it. Yeah. Every time that I, I get to hear from you, I feel like I learned something new and, and Um, you have a unique perspective to share as a mom and also someone who's been managing this for, um, quite some time.

So, uh, a lot for the, the listeners to look forward to today.

Yeah. I can't believe how, how long it's been already. It Time flies, but you know, you learn something new every day and just learning to get by every day.

Yeah. Um, well to dive right in, do you want to talk, um, about your experience maybe getting to this point, um, maybe starting with kind of leading up to the diagnosis and, and I know that you've shared kind of that story.

Um, but as time has gone on, as you've mentioned, perspectives have changed and, um, if there's anything that you want to kind of tell differently, this is your opportunity to do so. Um, I know that, you know, with different experiences and new doctor's appointments and new symptoms and all those things, looking back, like the past also, um, probably looks different.

So I'd love to hear, um, from you about kind of how you, you reached the point where you're at now.

Yeah, oh my god, I feel like, well, I'm 40 now, so I feel like it's been a long ongoing thing for me. Um, you know, like I mentioned in the blog, I know if I look back hard enough, and I have, um, there are a lot of moments that I feel like pointed to.

So issues with me since I was a teenager, you know, I struggled with migraine since I was a teenager. I've had back issues. Um, but I was always able to just rise above it and like be able to function and still. Just, like, be myself and work hard and, like, do all the things that a normal person can do. Um, even though I had bad days and bad moments.

Um, but there were a lot of brief moments that I know, um, were either, uh, correlated to, like, POTS or, uh, orthostatic hypotension, um, and fibromyalgia. Um, but it really, really changed drastically after I had my daughter, because I ended up after having labor, laboring with her for like, it was like, two days, um, I ended up having sepsis.

By the time she was born and you know, I remember having a super high fever and it just being so out of it and Coming home. It just felt so different than coming home than that was with my son and like I felt so physically drained and Everyone was telling me like well if you did a vaginal birth like you should recover very easily because with my first I It was a c section.

With my daughter, I decided to, like, forego the c section because I thought that was awful. And I wanted to do it naturally and, um, I felt like I was more beat up. And it took months and months of after giving birth to her to, to really realize, like, this isn't getting that much better. Like, why is this that much more tough to recover than it was from a C section?

Um, and in talking to my doctors, they're like, you're just a new mom, you have, you know, a two year old toddler, you have a newborn, you're breastfeeding, you're working, so all the things that, you know, you contribute to being a mom, being a parent. You know, you're not sleeping, my daughter definitely was more demanding.

So, um, It was, I couldn't pinpoint it. I just knew that I felt different and I've always, uh, been active. I love working out, you know, I, um, love doing yoga and I, you know, I've always stayed fit and I just could not for the life of me work out. And I was like, well, okay. Maybe I just need a community and I found a community I started working out again, but it was really hard still It was I really had to push hard and like take everything in me just to be able to do it so in time, I knew I was struggling um and I just then attributed to My work because that's what my doctors were telling me.

I would go to the doctor and I just don't feel like myself you know I would end up with a kidney infection, with pneumonia, with, you know, a constant cold or the flu, like it was always something, or my migraine was getting worse, and they would say it's the stress, it's just the stress from your work. And being a New York parent and it didn't feel right, but I was like, okay, well, I guess it's just me, you know, like, I'm not being able to manage it.

Um, and, you know, doing my job got much more difficult. I had long hours. I was on my feet all day long, um, and even, um, just thinking about it. Now, there were days at the end of the, of my shift, like, I would walk back to my office and I had the moments that I have now, I just never paid attention, where, um, it's, it's like someone turns off the light on you, like, they flick the switch and everything goes black, but it, they switch it right back on.

And that happens to me all the time. Um, And I never understood that, and I was like, I'm just tired. Like, that's what I just told myself. Um, but, fast forward five years after having my daughter, um, we had like a, a very personal family problem that affected me emotionally, and that year is when I really started to feel like

a lot

of pain, and, um, just my body was I felt like just sore all over, just very muscle fatigue, I mean, I can't explain it.

Um, and I felt like that was one, um, thing that really affected me and I, looking at it now, I am a very emotional person. You know, I'm very sensitive that way, and I'm okay with that. Um, I didn't know at that time that things like that affect me. Um, and I remember just, again, going to the doctor, and I did MRI and everything, and, oh, everything's fine.

Um, again, stress, family, all the things. I'm like, okay, well, I'm working from home now, so I don't understand how this is affecting me. Like, it was not making sense to me. Um Because I'm like, well, that work stress is gone. I get to be with my kids now. Uh, I'm working from home. It feels good in that aspect, but my body was still suffering, still struggling.

And it, it was getting worse. Um, and then in 2019, I got pneumonia again. And I think that was like another little catalyst, like, that's the word, catalyst, like pushes it forward. Um, I started to feel more winded. Um, by the end of that year, I felt dizzy. I started to feel faint. Like, actual, not just the lights off and on, it was like blurry vision.

I felt like someone was turning the lights off very slowly on me. Um, and I just remember sharing that with my husband and he's like, you look fine, you know, he wasn't trying to be mean about it. It's just I was still doing what I was supposed to do and I needed to do, but, you know, struggling to do it like, yeah, I, um, And then in 2020, I had my first fainting episode where I completely collapsed and that I think scared me and scared my family and scared my husband and, you know, traumatized my kids for a good while.

Um, and I did not know why, um, I was having intense, like, migraines coming on very suddenly. I was having. Now I know that, uh, migraine can cause more than just, like, visual rest. Um, and knowing now, POTS intensifies the migraine episodes that I have. So, during that time, um, my face would droop down and go numb.

I had these intense, intense headaches. I was, you know, so nauseous, um, throwing up. I went to Urgent Care. I went to the ER and doctors kept saying it's anxiety. I was even told that I had the White Coat Syndrome, um, said that it was in my head I just, I felt frustrated, um, and one of those ER visits, I just, I actually went back and looked at the notes that she wrote.

And she put there that I looked, um, under stress and I had tachycardia and I was like, wow, I was like looking back now, I'm like, it just makes sense. Um, and she even just suggested, um, she asked my husband to leave and she asked me like, is he abusing you? And I was just horrified because I was. So angry and I was like, you know what?

I was like, it's not anxiety. I know what anxiety feels like. Cause I get very anxious just flying. So my brain does go there. Yeah. Travel. So I know what anxiety feels like. Not anxiety. I was like, I'm stressed out and frustrated with you doctors, where I'm trying to tell you there's something wrong and you're not believing me.

I was like, and using my husband as a scapegoat, like, it's infuriating because here's my husband forcing me to go to the doctor because something's off. Um, so that was a very like, frustrating visit to the ER, but she did come back and apologize because she's like, Oh, your potassium levels are really dropped.

That looks like they might've caused a mini stroke. And, um, you know, I've looked at all the notes on these, like, previous visits and the signs were there, they just were not being bothered to really listen to me, um, and really take me seriously. It's just, I felt like I wasn't being believed. So, um, that was in 2020 and I did end up getting sick.

We thought it was COVID for a second. Um, they tested me, it was negative, so we assumed it was the flu, but I was so sick that throughout that summer, I had really bad vertigo, um, and I couldn't shake it. And my doctor that I had at that time just ended up saying that there wasn't much more she could do for me, aside from give me like, you know, nausea medicine, pain medicine, and that was it.

So I really felt defeated because. I was out functioning. I was having a hard time walking my dog. I, you know, I was having a hard time working out. Um, and I remember I just, we used to, I used to work out with my husband at, at that time and he would tell me, it's like, babe, your heart rate is really high because, you know, I've been wearing a watch for this part of the back so I can remember, but I never paid attention.

And, um, I was like, I was just normal. Um, I was like, it's normal for me. I don't, I don't get it. Um, but he did notice that I was constantly leaning over more like, you know, when you just you're gasping for air, I would lean against the walls and holding on to chairs. Um, but at that time, I was kind of done with doctors.

I didn't go to a doctor for almost a year because I just. You come to a point where you just don't want to deal with it. You don't want to. You are tired of speaking up for yourself because it's hard and someone's not listening to you. Like, then what's the point? You know? Um, so in 2021, um, I, that's when the vaccines came out and I got the first one and I felt ccro for a couple days, or primarily usual.

And I was like, okay, I'm okay. Like, I'm not okay, okay, but, like, the vaccine doesn't say to have infected me in any way, so I thought. Um, so I went and I got the booster shot when the second round came out. And I crashed so hard after that. Um, it was like, I got the flu. And, um, I was actually, I had fever. And Um, for days, and then after that point, like every task was still hard just to get myself to move and do it.

Fortunately, at that time, my husband was working from home because of the pandemic. So I had that help and I had to focus on my kids because they were schooling from home and, um, but it was after that summer in 2021 where after coming back from a trip I couldn't move. I couldn't go to the bathroom without feeling like I was going to pass out or passing out and my husband forced me to go back to the doctor again.

I didn't want to. I did not want to. Um, so I found a new doctor, I went to a new doctor, because I did not want to go back to the old one. And she was a young doctor, and I'm so grateful for her. Um, because she didn't say much. She actually listened to me. Um, I didn't know it at the time, but she was the first doctor to do, uh, an orthostatic vitals test.

Um, and by the end of it, she said, let's refer you to a cardiologist. She's like, follow up with me in a week, and we'll see, we're, we're gonna see how you're doing, but you need to go see a cardiologist, and

I

was like, okay. So after that, I was like, okay, it's my heart, it's in my heart, because I didn't know, like, I didn't know what palpitations were, um, or what they felt like.

I did not know, I felt like, I thought I was a smart person. Apparently I was very clueless. Um, that week I dove into researching anything heart related. So it was scary because I was like, Oh my God, what is wrong with my heart? Am I having a heart attack or am I having heart issues? And, um, I came across someone who shared about what POTS was.

And that video, um, she like listed all the symptoms. And how you're feeling, and I was like, oh my god, like, this is me. But like, I showed my husband, and he completely agreed. Um, so, I started to research. So, at that point, I had never heard of POTS, and that was like the first time I came across it. And it was at the top of my head, like, thinking of like, this is what I have.

Um. After, on my week follow up with this new doctor, she had told me to check my vitals, to buy a blood pressure cuff, and to check it, um, morning and night, or whenever I felt bad or off. Um, so I started to keep track, and started to pay attention to my heart rate. And I was like, oh my god, like, it's like 80 when I'm laying down, and 160 when I stand up.

You know? I was like, this is, this has to be it. Um, so what I, it was a phone appointment and I told her I was like, yeah, my, my BP is, I think it was like something around 86 over 50. And she's like, you need to go to urgent care right now. And I was like, okay. So I went in and they told me my heart rate was too high for them.

They're like, take care of me. And they helped me. Coming to the er. Uh, to the er, I went, and that is where I felt like I came across another angel doctor because I was so frustrated and tired. Um, and he told me and I explained everything to him, and I was very determined on not saying like, I think this is pots, because I've had doctors tell me like, it's in your head or.

Uh, I once told the doctor, could it be fibromyalgia, and they're like, fibromyalgia is not a real, it's not a real disease. So, I was scared to just even suggest anything, and I was just gonna focus on explaining all of my symptoms, exactly how I felt them. And he's like, I don't know what's wrong with you, but we're gonna figure it out.

And I've never had a doctor tell me that. Um, and at that moment, like, he had the nurse help me go to the bathroom and I was plugged into everything still. And I was laying down, my heart rate was fine. And the moment I sat up, it showed up to like 144 or something. And the nurse was like, Oh my God, I've never seen this before.

And I was like, see, I think we can tell him that we have proof. Um, yeah, so he, he, he did. And that is when the doctor decided to go find a cardiologist and get his opinion. He came back to me and said, like, like, just looking at everything and saying, you know, your vitals and everything. We think that you have, uh, Or the, um, postural ortho, sorry, postural orthostatic cardiac syndrome.

He said the whole thing and I was like, it still didn't, you know, like, it's like a strange word to me. He's like, there's not much I can do for you aside from hydrate you and tell you to wear compression socks. He's like, and you're going to have to wait to see until you meet with your cardiologist and go from there.

I felt such relief at that time because I had been looking for answers for what felt like forever. Um, that point had been seven years since I had, I had my daughter. Um, and so many doctors have disregarded me or put me down. And it felt just like such a huge relief off my back. But then little did I know that There was no cure for it, and, um, that it was going to be still like a, a pill battle.

Um, since then, you know, I have gone through all the emotions, uh, the ups and downs. You know, I still have rough days, but from that day in the ER where I couldn't even walk to the bathroom, like, I am, I'm able to work out now, not like a normal person, um, but I know what to do a little more. I'm still home.

Figuring it out day to day, but it's been what

feels like a really long journey. Well, thank you so much for sharing all of that. Um, it always, no matter how many stories I hear of people losing faith in the ability to find someone that will listen to them, I hear this over and over again. It breaks my heart every time and I'm so sorry that you had to go through that.

I think. It's a huge lesson for, for any provider listening, whether it's, you know, a medical assistant or a tech or a nurse or a doctor, whoever it may be. You know, the experts in this field don't have answers. So patients don't always, they don't walk in expecting everybody to know everything. They just want someone to listen.

And I think that hearing your story just really solidifies that because, you know, your, your, one of your best experiences was when one of the doctors didn't say much. And I think, I think that says a lot.

So, because like you want to be heard and sometimes like they I don't know, you know, I have to give them grace too because I don't know if they're having a bad day. I don't know if they're having a rough day. I don't know if they're tired. Um, but sometimes you get so easily dismissed. And, um, it happened to me again, um, earlier this year.

I was back at Region Care and, um, I couldn't get my doctor. I couldn't see my doctor. For like a month. So I was like, well, let's go to Urgent Care and see and I was completely dismissed and she said you're the one causing your pain and It's frustrating Navigating Navigating it all and I do try to give the benefit of the doubt because I don't know what someone is going through on their side, on their end.

Um, so, yeah, it can be tough navigating it all. Um, but I am learning and I'm realizing, I was like, I just need to stick to this one doctor here. That helps me and, um, just remember that they're human and that they don't know it all and that they are busy and they're limited in the amount of time that they have for us, unfortunately.

So I do go with like only one concern or two at a time. And if it's not urgent, I will message them. Um, And I do respect their time, and I respect and honor the knowledge they do have and they don't have. I gave, um, there's a book for dysautonomia, I gave that book to my doctor. In hopes that, you know, that she can know and understand a bit more about dysautonomia.

And she has, and I think, I'm happy to be that guinea pig for her to try out things on. Um, so that she can help someone else.

That's amazing. I think we're in a phase right now where the so many patient advocates and including yourself are in the mindset of, you know, I, I hope at least someone behind me gets helped because of my experiences.

And we know that there are going to be many people behind us that are going to have the same conditions and, um, hopefully are able to more quickly come across a person that. Can at least refer them in a different direction and give them a little bit of hope. So, thank you for, for all that you've done to, to help the people that are going to come behind you.

Oh, I hope so. I hope so. And I know we are. I think we are all doing, I think we're doing an okay job. Uh, I think we could probably say more, but I think sometimes we are all scared. I know I am sometimes to share the story. Um, but now that I go to the doctor, there are more and more people who know about what POTS is, or what, uh, orthostatic hypotension is.

And in the beginning of, you know, going back almost three years, they, no one knew what POTS was. Every time I brought it up. And now it's just a little more known. So that, that makes me happy.

Yeah. I, um, I think of you and Jackie and so many other of the community members that have opened up about incredibly challenging things in their life that have undoubtedly benefited others when, you know, you heard someone's story online and it was what, you know, Um, kind of turned a light bulb on in you being like, there's an explanation for why I'm feeling this way.

Um, and it's inspired me to be very open about my experiences with my classmates and, um, people are now like referring others to me when they find out this person has this X, Y, and Z symptom. I know Ella knows something about that. So we're going to refer to her. And I think it's, it says a lot that like, you don't need to be.

Um, teaching people, you simply can share your experience and where it's led you and it will probably help someone else one day. So, um, that's, you know, the mission of, of this community. And I really hope that it continues to, to move us in the right direction. So,

no, I'm, I appreciate listening to everyone's story.

Um, I'm always listening to your podcast and to other podcasts and, um, I know, you know, little bits can help someone because I know they've helped me, um, even suggestions on, like, what you can do, tips and tricks and things like that, that have helped me.

So you talk about how wonderful and supportive your, your family is, and it's a common theme. Um, and I'm sure that they've gotten you through many tough times and tough moments. And, um, I think that this is something we talked a little bit about during the panel at the conference. But I would love to hear how your experience has Managing this as a mom has been, and if, if anything has changed since you last spoke about it and your perspective on this topic, um, any thoughts at all?

Yeah, um, you know, I'm so grateful for my husband and my kids because they're my world and, but also more, the most understanding and supportive, like you said. Because not everyone is, you know, um, and aside from my little circle, I've struggled with, you know, explaining my condition to my, the rest of my family.

Um, I think a lot of people still can't grasp or understand what it is or how debilitating it can be. But when it comes to my kids, it's, it's been a journey. Um, like I said, initially it traumatized them. Um, My first painting episode. I am a painter. So seeing someone pass out is a scary thing, especially someone you love.

Um, it gave my daughter a lot of anxiety. Um, after that first episode, she was, You know, she's always been a mom's girl, but she was glued, like, she had to see me, she had to make sure I was breathing, she would put her hand on me, making sure that she's touching me at all times. And that was really tough. Um, initially, I, I'll be honest, I couldn't even think of like, how am I going to share this with them?

Or how am I going to, like, go through it? You know, I'm in a headspace of like, what's called like, survival mode. Um, so they saw all of it. The real, the raw. I couldn't hide it. Um, and even if I wanted to, I could not hide it. So, them seeing me at the hospital or, you know, constantly passing out was, was hard on them.

Because they thought I was dying every time. They were little. So In time, I started to research how to talk to your kids about your illness. Just Google. And I started getting tips and tricks from, from other people who had shared it. And to be honest, there's not much out there. Um, um, but I've always appreciated, like, honesty.

And, um, That's something that I've always shared with my kids, like, let's just be honest, let's be real, let's be raw. And that's what I did with them, that's what we've done with them. I probably have explained what POTS was to them a hundred times, you know, cause I barely understood it.

Now you're in charge of educating others about it when, you know, there's, there's not much to, yeah, it's, it's a really tough position to be in.

Yeah, so we've had to explain, um, a lot to them, um, along with waiting for, you know, I had to have like the echocardiogram and like all that stuff to make sure my heart's okay. I do have some arrhythmias, um, but as of right now, I told them I was like, I'm not dying. Like, so, um, I have to tell them that. I'm like, and then I realized, I was like, I have to give them some kind of uh, control because if they're anything like their mom and dad, they need to have some kind of control.

Um, and they are, so We've gone through scenarios of like, what do we do if mom is like this? What do we do if mom passes out and dad isn't home? Like through all of those scenarios, we played it out. And it seems silly maybe, but I know that it gives them peace of mind. To know what to be able to do in case mom thinks, um, and now they do know and, um, they know that they need to grab for my salt pills and my water and my medication.

So, um, I am in a place right now where I'm having, I would say in this past month, I've only passed out twice, which is good for me. Um, I have, uh, more awareness of it, and I am on medication, but I have had to explain all those things to them. And really, they're, they know very, very much everything that I struggle with.

And I'm not scared to share it with them, and I'm not, I guess, too prideful to be like, I don't feel good. And, um, initially it was, it was hard on them, because they had to Um, I guess step up a bit and help a bit more than they normally would have. Um, but then they took it and tried. Um, before I knew it, um, I ended up having my appendicitis.

Oh my goodness. Um, yeah. So, you know, I came home and they were just ready to do it all. And, you know, my husband had to go back to work after the weekend and they were making dinner. They were, you know, like washing dishes. And I initially, I would feel bad because it's like, this is something I'm supposed to be doing.

You know, I'm like, I've always been the one that's been in control and done it all. And now I have to ask for help, but I'm at the point where I don't even ask for help anymore. They just know when mom's not feeling well. And they have to take over. So, you know, it's, it's been a learning experience and we've gone through.

You know, anxiety attacks, like panic attacks and, you know, lots of crying, lots of frustration, you know, uh, I think, uh, my daughter went through the face of like, I hate pot. Pot sucks, you know, like, uh, through that hate face. Um, but I think right now we're at the accepting phase where like, this is what it is, but we can still live our life differently.

Glad we can still live a very happy life.

Wow. Well, your family sounds amazing. And, I think the, that's brilliant, the scenarios that you guys played out. I think that That's something, whether parents are sick or not, um, you know, with something that they can define and they sort of have some semblance of control over, um, but preparing children for any type of emergency, um, I think is important and, um, You know, your, your family loves you so much and it sounds like your kids also want to be supportive, um, in any way that they, they can be and probably have grown up a little bit faster than maybe some of their peers have had to, um, and, you know, taking some more responsibility.

And I would imagine that they're going to look back and in pride one day and also be grateful for the fact that you kind of allowed them the opportunity to learn those things. Um, And we're very thoughtful about how to include them in a way that maybe made them feel more secure about the situation because I, I can't imagine not being able to understand and also being very afraid.

Um, so I think that maybe there's other parents out there listening that are managing this and, and feel, you know, they have maybe a new tool to try out with their kids to make their kids feel more comfortable or at least informed. I think that's really important.

Yes, I've shown videos to them and I, um, I hope that helped them understand a little more.

But yeah, I can only hope that it helps them in the long run and they can be more compassionate and more empathetic towards others. Um, and I think they are. I think they definitely are. Um, it's just, you do have to go through the rough

patch of it all. Um, I can only imagine though that it's prepared them to be, um, More understanding of people's circumstances that they can't explain.

And I think Um, that's a huge part of the reason that so many patients, I think, have struggled with, you know, POTS and similar and related illnesses is, um, people tend to avoid, uh, investing in things that don't have a clear cut explanation. And I guess especially in the medical field, but, um, we need more people in the world that, you know, you don't need to explain that, the details of, of why you may feel bad, but just trust that, you know, the person, the person is trying their best and, you know, they may struggle with something that we can't, you know, physically see.

So, yeah, um, I would love to know, now that you, you found, identified this doctor that has been supportive, um, and obviously there are still limitations to, um, the care that you've been able to receive, um, but how do you, Do you have any advice on how to advocate for yourself in doctor's appointments or things that maybe you've tried, um, that have been successful?

I, I really appreciate you sharing about, you know, going to the emergency department and, you know, not wanting to, um, present a diagnosis, although you had a very strong sense that that was kind of what you were managing, um, Any, any tips on communicating or anything that you feel like has been effective in, in certain settings?

Uh, yeah, absolutely. I mean, I feel like I've, I've seen thousands of doctors at this point. I am grateful I have my primary care doctor now and my cardiologist that I work with. Um, and some of the things that I've learned to just kind of present myself in a, in a a better form, like more. Clear way is I jot down my question.

I write them out. Um, I write down. Even like what I'm feeling, because I have brain fog, so I forget everything by the time I'm there. Um, and there's been times where I'm just like, here's my list. Uh, it's not a super long list, it's just like questions of like adjusting medication, or should I do this with this, you know, things like that.

Um, where it's just easier for me to like, okay, these are like my new concerns, and these are the questions I have. Um, so I would definitely recommend write it down because I know that I tend to forget things. Um, you know, remember that they do have a limited time, uh, with you. I know that my doctor has, uh, 15 minutes with me.

My PC has 15 minutes with me. Um, so I have to make it count, I guess. Uh, focus on the things that they wouldn't otherwise do. See through your phone or, uh, an email message. So maybe there's something that they need to check, you know, like focus on those concerns, uh, first, um, and everything else. Like she welcomes me to message her and email her.

And then I know with my cardiologist I have more time. Usually I have half an hour to an hour with him. Um, so, just acknowledging that they're human too, because I think we forget, because I've been there. It's been me, you know, before I was like, how could they not know? Or how do they not have enough time for me?

It's because they do have a very limited time and have other patients to see. Um, When it comes to how I'm managing now with like medications and treatment, uh, we have tried quite a few medications. I am very, very sensitive to medication. Um, I think most of the medicines that we've tried make my blood pressure go even lower.

Um, but I think we found a good balance now. I'm on, uh, I'm on propranolol and, uh, mitodrin. And I do Vitogen only as needed. And, um, I take my felt pills as well. And along with other medications for like, other issues. You know, migraine, IBS. Um, and I have made it clear to my, initially, When all of this, you know, I, I got the diagnosis, my first thing was, I don't do medicine.

And that's, I made it clear to my doctors, I don't want medication. Because I knew that every time I tried a medicine, it made me feel worse. So, they were very respectful of that. And we tried a lot of the more natural ways initially, like acupuncture, therapy, all that stuff. Wasn't really helping, so I decided to start on low doses of medicine.

And they would give me the lowest dose, and then I would cut that in half. And take that. Um, and I realized I just had to slowly, uh, get my body used to taking that specific medication. So, um, now I, I think I'm in an quick okay, like couple times a day. Propranolol and Mirad Adrenal is really rough. Um, but yeah, I mean, just be clear with them and don't be scared to tell them what your beliefs are or what your concerns are or what it is you want or don't want.

And if they can't respect that, then maybe they're not the right doctor for you. Because they really, um, they were great about it. They would tell me, I know that you don't want medicine, but this might be able to help you if you're a threat. Um, and that's kind of the direction I ended up going because, you know, I was feeling desperate.

I needed some kind of relief.

Yeah, I think the writing stuff down is, uh, a great tip too. Um, I think so much happens in between appointments and being able to, like, look back at your log of, like, Oh, this is how many times. I passed out, or how many times I almost passed out, or, um, these were the number of days that I was able to do X, Y, and Z.

It's like good to track that over time, and I think that, um, the hard data is often also helpful. Um, you know, and, and, I think it's really hard to, to manage, because you're living it every single day, and you go into the doctor, and it's like you feel frantic, and you only have that amount of time, and it's like, what do I prioritize, and, um, I also acknowledge it's exhausting having to prepare for all of those appointments and having to go through them.

Um, and every time is a little bit of a battle. And I think, as you said, the person may not be right for you. So the goal is to find the provider that's willing to kind of fight the battle with you and be your partner in it. Just be in charge of you, um, and in charge of your care, but be your partner in your care.

Um, so

yeah, absolutely. And my cardiologist even, um, every time I go in, he always looks at my, like, what's that app called on your iPhone? Um, cause I have the health app where, um, you can, He can see all of my heart stuff, so he looks through that and he, he'll point out certain things or he's saying, you're doing well here without, you know, just you've improved here and not there and let's, how can we make that better?

So that's also been helpful too. I know a lot of people don't like these because maybe it gives them more like, yeah, stresses you out a little more sometimes. But in my case, it's been a great tool.

Yeah. Do you feel like it helps you kind of track, like, when during the day your medications are the most helpful and things like that?

Yes. Because I, I really do pay attention to things that maybe will lower, like, compression socks. They're not the biggest thing that helps me. But, I, I can tell you it definitely lowers my heart rate by five to ten beats per minute. So, um, I wear them because like every little bit helps because I can see it on, on my app.

So, um, that's how I do track a lot of that stuff and it's been very helpful to me. I

know everyone, um, has a different approach for Um, how much information they want, but I'm, I'm glad to hear that it's of benefit to you to have, um, as much data as you can and kind of in the, the realm of, you know, Wanting to feel, um, a little bit more sense of control.

It's like if I have this information and I'm able to put, you know, different inputs in to see what the outputs are, it's helpful to get that feedback.

Yeah, and it's something I didn't pay attention to before. Like, so, I mean, I had one of these. And I remind now, I'm like, I don't know why I was using it, because I didn't really use it.

Um, but it actually was very useful. And I remember my cardiologist actually went back, um, to, from like the beginning. And he could see, like, you know, when it would go up. You know, my resting heart rate versus my walking heart rate. Um, so, to me, like, that was the first thing after knowing what POTS was, I started looking at my heart rate, and I was like, Oh!

I was like, that's not normal. Like, I just thought it was

Yeah, you compare it to your husband's and realize, you know, your body's working ten times harder just to get through the day.

Yeah, so I was like, that makes sense. I'm like, no wonder I'm just tired and fatigued, like, by the middle of the day.

Um, going back to what you said, you know, you got a diagnosis.

Not knowing at the time that, um, you're getting a diagnosis for something that doesn't have a cure. Um, I think that because of that, and hopefully one day we will, we're inching closer to having more of an explanation. Um, I think so much of care. Um, when done right is really focused on quality of life and improving quality of life.

Um, and I'm curious how your quality of life has changed over the years. I'm sure that there's been fluctuations. Um, are there things that are particularly important to you that is kind of the strongest indicator of your quality of life at the time? Um, and Um, maybe how the definition of that has changed over the years.

Uh, yeah, it's definitely changed. Um, I think after having my daughter, you know, you have a baby and you're like, Oh, I have like, you know, just had a baby. So I have that pregnancy way or whatever. I initially started working out more consistently because I used to always go to the gym. It was just not for like, Yeah, um, but then I was like, okay, I need to do something.

Um, it was more, you know, for me, like, all the things I did were for me to be skinny. You know, I'm not gonna lie. It was for me to lose the weight and be thin. And that's what I did. Thought healthy was and I know now like looking back does not make sense at all But at that time that's everything I did was for that and then it slowly started to to change because even During the that time I would struggle with the fatigue with more migraine, um, I even went vegan, um, to try to get rid of the migraine episodes and it helped a lot.

So I slowly started to just, it started to transform my mind. And where like, wait a minute, I was like, everything that I'm doing is to be able to be here for my kids, uh, to be able to be stronger for my kids, um, and now I do it so that not only can I be a little stronger, um, but just to be able to manage my symptoms a little bit better.

I know that for me it helps me to move, like every other day to do like, um, a workout. I don't do a super strenuous workout. I can't do crazy cardio. You know, all I do is cycle. Um, so my life has definitely like right now the focus is for me to like everything that I can do just feel a little bit better, um, and to be able to be healthy on other aspects of things that make sense, like, you know, for example, diabetes runs in my family, and I know that is something that is very prominent.

And if I can avoid that, that's great. Then I want to avoid that. Um, so it's definitely changed a lot and I think through in the past now 10 years that I've been, you know, really dealing with the worst of it. I think, um, I slowly would change habits that I know would benefit me because they made me feel better.

So I know working out or I always wanted salty stuff. I just didn't know. Um, but I always wanted like something salty like pretzels or, you know, fries. It was always something that I craved and even during, you know, Um, and I think that, like, during a pregnancy, like, I just want pickles. Yeah. You know? Um, so, I've always craved the salty.

And now I'm like, huh. Like, it just makes me wonder, like, you know, they say, like, your body craves what your body needs. I don't know how true that is, but, you know. I've heard that a few times. Um, so my lifestyle now is just definitely focused on being able to function a little bit more every day. Some days I don't.

Some days I overdo it. Um, but I eat, uh, no gluten now because I know it makes me feel awful. I limit my animal protein because I have a hard time digesting it. You know, it's all these little things that just like, have piled on, but you learn to get used to it and adjust. Um, and it definitely changes over time, like why you do it.

Yeah. So,

I hope that answers your question. Absolutely, yeah, thank you. Um, are there any misconceptions that Um, come to mind when you think about your condition or people with similar conditions that, um, you think are kind of important to dispel?

Yeah, um, I think people who do know of it, they think it's just a heart condition. You know, uh, it's not just the heart condition. Definitely makes your heart rate go faster, um, but it affects your entire body. Um, so I, I definitely. I would like to let people know that it's not just your heart. It is It's your, your gut, it's your blood pressure, it's your blood sugar.

For me, um, it's all of my, like, my potassium level tends to drop, uh, my vitamin D level tends to drop, uh, I just got, I'm coming out of, like, being very fully anemic, um, I got, you know, iron infusions because I'm not absorbing. The iron. Um, so it's just more than the heart rate and this condition, although we're all different and I, and I know that it can be very debilitating and people don't see what it takes to be able to just go to an event or go to an outing.

You know, usually like if I can wear compressions under everything I have, I will. But people won't notice. Um, I take my medicine, I take plenty of salt, I sneak salt in between, I make sure I drink lots of water. But people don't see that. You know, people don't see the day after when you're laid out, not able to move, or passing out.

You know, they don't I'll see the ugly or the struggle that it takes to be able to function or do certain tasks.

Yeah.

Yeah, it's, um, the people close to you are the ones that, um, can see that, get to see that. Um, and it's something that's hard to explain if there's, if you don't have personal experience. Um, hard to understand as well. Um, Unfortunately, you don't know what it's like unless you're in it. Um, I lost my train of thought.

Um, Oh, I was going to ask, um, you mentioned that after you were in the emergency department and you were getting, or you saw your doctor and then you were going to be getting referred to a cardiologist, um, and then you started looking up, um, heart conditions. So at the time you, You know, didn't have a diagnosis yet, didn't have an explanation as to why you're feeling the way you're feeling.

Once you did get a diagnosis, um, how much further researching did you do? I, I, I know that every patient has, Um, a different level of kind of curiosity to know what the latest and newest research is. Um, I know that many times people, um, feel the responsibility and the need to be up to date on everything because oftentimes they're helping their provider kind of.

Manage their care in that way. Um, but I'm curious if you, um, kind of keep up with research, if at all. Um, and if it's helpful to you, and if not, maybe kind of why the reasons that you don't, because I know that there's a huge spectrum in this community of, of how, um, how curious people are on the details.

I honestly have not thought. Um, I'm a. I'm a, and well, I was a control freak. Um, I love having, just knowing and, and being able to control the aspects of my life, although I know I can't control aspects of my life anymore. Um, but if there is like a new research that shows, like I remember, I think it was the Dysautonomic International Conference.

And I remember them talking about compression. And at that point in time, I was only wearing compression socks. And they specifically talked about abdominal compression and the benefits and how it ended up helping, um, More than just like compression socks, I was like, okay, I am going to go buy myself some abdominal compression.

I didn't have any of those, like, tight things, you know, I'm, I don't like feeling constricted. I still don't like it, but I do use it, especially when I'm out. So no, I have not stopped doing research whenever I get the opportunity to be a part of a conference or listen to videos and podcasts. I do because to, for me, and I know this is very specific to me, is I love having some sense of control.

Uh, and knowing that I'm doing everything I can within my power to reduce symptoms. Um, and even with medicine, you know, I talk medication with my doctor, then I research it first, and then I tell them, okay, I'll take it, or no, you know what, that does not sound like something I'm going to enjoy. So. I absolutely do a lot of research, and I know they tell you not to Google stuff, but I think you can do it in a responsible way, where you look at

resources,

and where you're getting your information from.

Um, I definitely look at a lot of, um, studies and things like that. Um, so, no, I'm not soft researching. It helps me, and it just

gives me some peace of mind. Which I think is great. You know, we'll take that wherever we can get it. Laughter.

No, because, you know, you can't control, I can't control how I'm going to feel in an hour.

But if I can help it just a little bit, I'm going to like, and I know that, um, I don't know what I always said this, but something about like, just making sure you get enough blood flow to your brain. So like, even before going to pick up my kids, I lay down, I put my feet up, uh, so because it's, I have to drive to two different schools and wait.

I make sure that I. I've rested and allowed enough blood flow to my brain so that I'm okay picking up my kids, you know. Um, so I know that research has helped me and it's helped me just manage, um, all of my conditions.

Um, do you have any advice for people either newly diagnosed, um, for the first time or maybe diagnosed with, um, a new kind of health condition that, um, doesn't have a cure or is lacking in, um, clear treatment?

Um, is there anything that you'd like to share with them?

Well, I would definitely say do your research, um, because, and like I said, doctors unfortunately don't know everything, um, and the perfect example are my doctors, um, my PC had never heard of POTS before when I started working with her. And my cardiologist had heard of POTS, but he had never managed someone with POTS.

And, um, I knew that, you know, even in front of me, they were Googling stuff because they didn't know, you know? And I respect that in a way where, like, I'd rather you be honest. But I also know that that responsibility is also on me, not just on them. You know, I'm my own responsibility, and no one's gonna care for me as much as I do for myself.

Unfortunately, um, my husband, of course he cares for me, but I know that we, I have different responsibilities, you know, um, so definitely do your research, you know, you don't have to go as crazy as I do, but definitely do some research and listen to. Uh, other people's stories, because there are little, like, golden nuggets in everyone's stories that might help you.

But also know that not everything's gonna help you, because we are different. You know, um, I met someone, um, at the hospital, a nurse, and she had POTS. Uh, she told me she was on metropolol,

is that the one?

I forget which one it is. At that time, I had tried multiple medications and none of them had helped me.

And I was in awe of her because she's here, like, running around and I'm here asking for a chair so that I don't mess up. Um, everyone is different, you know, and we all react to medication differently. So know that it's gonna take some trial and error on your behalf to find what works best for you. And then give yourself grace.

Because This is not easy, um, and it's not for the faint of heart. It's a big battle that you have to do every single day. Um, so give yourself grace. I have accepted now that I need to rest. I used to think that was just, I was like, Oh my God, I can't be lazy. Like, that's what, you know, I grew up thinking, you know, um, I'm like, I don't want to be lazy.

Like, that's just me being lazy. I'm like, no, like this is me recovering so that I am able to take care of my family and do what I can for them and myself. So what? I don't see it that way and it took a while for me to change that mindset. Um, that resting is me working and helping myself, working for myself.

So, yeah, so give yourself grace and all that's not going to happen overnight. And one more thing I want to say about that is, I've seen a lot of, not a lot, I've seen a few people, uh, who've had POTS and they are on remission or they said they've cured their POTS and at first I was like, how did they do it?

Like, I need to do what they're doing. Um, and then I would try and I can't do this, like, I can't work out like that, you know? Um, and they have these plans. Again, just choose what is right for you at that moment. And start slow and know that some people will go into remission. Unfortunately, others like me are not.

And we all have, um, a different I think it was one of your podcasts that said, like, I don't have to worry about fainting. Like, but I know some people do. Something like that, I remember. I have to worry about fainting and falling and hitting my head and making sure that, you know, You know, I don't pass out while I'm picking up my kids, you know, um, we're all just very, very different.

So, that's it.

Yeah, yeah, there's no single prescription to help us all and I think, um, that makes being a provider in this space, um, challenging, yet also allows people to get creative, um, and patients are able to give back. feedback on, you know, what's working for them or not, but, um, I also feel strongly that Um, I can't give advice and have it be blanket advice and trust that every single person is going to benefit from anything that I benefited from.

Um, so I think it's a really, really important, um, really important point and, um, and the fact that, you know, because we are different, things are going to move at different paces and everybody's going to heal, um, and manage everything at a different pace. And so I think wrapping up with the statement that Um, you know, or the, the encouragement to try to give yourself grace is, um, is a, is a great take home message, um, that is very, very hard to learn.

Um, I find it amazing that you're able to give the doctors grace after, um, you know, Um, you know, they treated you in a way that didn't serve you at that time, um, but very wise and generous of you to try to remember, you know, that we don't know the battles they're facing too. They don't know the battles you're facing and you hope that they would give you the benefit of the doubt like you gave them.

Um, yeah. But continue to give yourself grace like others you're willing to give grace to. So, um, thank you so much for sharing so much of your story. And, um, I know that so many people are going to benefit from listening to this and Um, I, I think that, I mean, I would love to continue to hear from you and over time how things evolve, um, but I just really appreciate you opening up and spending your valuable time and energy with me today.

Thank you for having me, giving me the opportunity to share this crazy story. These podcasts, they help me, they give me life. Because I know that I am not alone in this struggle. Um, and I, you know, I wish more moms shared their stories, but I know, you know, that we put our kids first and we prioritize our energy towards them.

And then we have nothing left for anything else. So, yeah. And for that

reason, I'm extra grateful. Um, I know that there are other people out there and maybe this is a public service announcement that if anyone else wants to share their experience, here's the opportunity. I'm here to listen and here to share it with as many people as I can.

Um, but, um, and I mean, I mean, I know they're grateful that you're doing this and they're, they're hearing you and I'm sure that. a lot of their experiences also in this story and hopefully over time we'll get some more voices to be able to, to lift up.

I hope so because I feel like it's so important. Like I said, there's a lot of little quilt nuggets in everyone's story.

We can all take away.

Thanks for tuning in to that episode and as we were discussing, if you or a loved one are a parent or a caregiver, um, and you or your loved one are living with a chronic condition, um, represented in our community, we would love to hear your story. You can reach out to us at dysunderstood.

com slash contact us, or you can just reach out to us on social media at dysunderstood on Instagram. You can reach out to me, Ella Easton on Instagram and thank you to Olga. And you can find her @olga.potsiefit. See you next time.