Episode 105: POTS Diaries with Karen from MO
[00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast.
[00:00:29] Jill (Host): Hello, fellow POTS patients and peachy people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries where we get to hear the tales of others in our community. So today we are speaking with Karen, and Karen, thank you so much for joining us.
[00:00:48] Karen (Guest): Thank you. It is a pleasure. I've been looking forward to it, so I really appreciate the opportunity.
[00:00:55] Jill (Host): Yay. Okay. Well, tell us where are you? How old are you? What are like some high points to know about Karen?
[00:01:02] Karen (Guest): Absolutely. So, I am 33, I believe. It's hard to keep track after you turn 30 [Laughs] but I'm 33. I live in Missouri, just a little south of the St. Louis area. I am married and I have three young children.
[00:01:19] Jill (Host): Oh, excellent. Okay. So, tell us some of your favorite things to do.
[00:01:24] Karen (Guest): Yeah, some of my favorite things to do. So, my boys are both in sports, so I love getting to watch them at practices and watch them play sports. It's a great opportunity for me to feel like I'm socializing and I get to see them do what they love the most.
We also really love and enjoy being outside. So, we live in a, a small lake community, so we enjoy things like fishing and going to the beach to swim and the outdoor activities.
[00:01:56] Jill (Host): Very nice. You know, I had to laugh when you said you enjoy watching your young sons play sports because I have realized about myself that I really enjoy watching little kids play sports more than professionals because professionals are too good at it. They just make everything look easy and automatic. Yeah. It's just like everything is destined to, like everyone always catches the ball and everybody always runs perfectly. It's way more fun to watch people who are imperfect at it. And so...
[00:02:25] Karen (Guest): I agree, I love it. And you get to see the kids really develop their skills and their personalities too, and how they work together as a team. So, I love watching them grow.
[00:02:36] Jill (Host): That's great. Okay. Well, speaking of personalities, how would your friends or family describe yours?
[00:02:43] Karen (Guest): I think they would describe me as compassionate, I hope, kind, and probably a little silly. Sometimes I can be a little bit too serious, but when I'm around my friends and family, I like to try to make light of situations. It's how I really cope with my POTS diagnosis.
[00:03:05] Jill (Host): That's great. I think you're the first person to say silly as a personality trait, but I think that's such an important, valuable, wonderful one. I'm aspiring to be more silly.
Okay, next question. If we force you to brag about yourself a little bit, what are you good at?
[00:03:23] Karen (Guest): I am good at helping others with things because I do feel like I'm a compassionate person, so I really like helping people, whether it be through a difficult time in their life or just sharing connections. That's definitely one of my favorite things about myself is my compassion.
[00:03:42] Jill (Host): That's great. So, did you have a time before POTS symptoms, and if so, can you give us a snapshot of what you were doing at that time in your life?
[00:03:53] Karen (Guest): Great question, Jill. So, I remember having symptoms as a child, and the more I think about it, the more I realize some of the issues that I was experiencing throughout childhood were probably due to POTS.
So, I can't really remember a time in my life before I had any POTS symptoms, unfortunately. But before it got really bad, you know, I'm used to just being able to drop everything and go, especially when you have three young children, you're always on the run, and didn't really have to plan very much. You just pack a bag, pack some drinks, grab some snacks, run out the door. I could drive, I could just go anywhere on the drop of a hat. So that's definitely something that's changed.
[00:04:39] Jill (Host): Yeah. So, can I ask you more about those childhood symptoms?
[00:04:43] Karen (Guest): Yeah.
[00:04:43] Jill (Host): Like what are your memories of childhood that now you think are maybe POTS related?
[00:04:47] Karen (Guest): I remember feeling dizzy a lot. I remember feeling dizzy a lot and having tachycardia, or the fast heartbeat. That's something I can think about while I'm sitting in class, at school, at my desk. I remember sometimes my heart would just start going. I'm like, oh my gosh, what is this? You know, I felt short of breath. I thought there was something wrong with my lungs. I also noticed there were times where I could run and play and not have any issues, and then other times I felt really short of breath or just kind of sluggish also had, you know, trouble sleeping and some of my first symptoms were just that fast heartbeat and the dizziness, really feeling kind of woozy as well, if that makes sense. Which I think ties into the dizziness.
[00:05:32] Jill (Host): And did you think anything of it at the time, or did you just think that was how normal people felt?
[00:05:37] Karen (Guest): Yeah, I really kind of felt like that's just how normal people felt, or maybe I was just nervous or, you know, when you're, report like sometimes your feelings and what your report is discounted, you know, I just thought, Nope, nope. Nothing is wrong with me. I'm just feeling nervous, or whatever the case may be.
So, yeah, I never thought it was an actual health condition.
So did you ever have a moment where you're like talking
[00:06:01] Jill (Host): to a group of friends and you're like, so you know when you like almost black out and they're all like, uh, no. Or like, how, how did you realize like, this isn't normal...
[00:06:10] Karen (Guest): [Laughs] It's not normal? I think I, none of my other friends complained about feeling bad, you know, and I just felt like I was always one of those kids who never really felt great, you know? I felt like I kind of got tired out easier, even though I was a fit kind of athletic type kid at some points in my life, I just felt like I couldn't keep up at certain points or that people had a lot better endurance than I did.
And yeah, that dizziness I remember experiencing. I always described it as the um, staticky TV, and I remember talking to my friends about that sometimes, and they're like, I don't know what in the world you're talking about. They had no clue. And I'm like, you know, sometimes you feel a little bit dizzy and you see it's like a staticky TV and they're like, no, I have no idea what you're talking about. So...
[00:06:56] Jill (Host): That's so funny because that is also my first memory. So, you just outed yourself as having POTS and being old enough to have staticky TV.
[00:07:05] Karen (Guest): Yeah [Laughs].
[00:07:06] Jill (Host): I don't, I haven't seen that in like decades, but that's exactly what it feels like. So it's reference.
[00:07:15] Karen (Guest): Yeah. I couldn't understand why no one understood. I thought it was the way I was explaining it, I didn't realize exactly that it wasn't normal, I just thought it was the way I was explaining it to people. So, yeah.
[00:07:28] Jill (Host): So, at what point did you say, okay, this isn't normal. I need to try to seek some treatment for this?
[00:07:34] Karen (Guest): So, I remember the first time I actually passed out, I was, I think 15, uh, it was working at my first job, and I absolutely loved it there, loved what I was doing. The whole day was totally normal, and I just, as I was up working and walking around, passing trays and things like that, I just really started to feel worse and feel like my head was in a cloud and I could hear my heartbeat and my ears, and I felt like my heart was gonna be outta my chest.
And then the next thing I know, I was on the floor looking up at my other probably 15 year old coworker. He was just absolutely having a fit. And I think one of the nurses who worked there was standing over me and it was a really scary time because I didn't understand what exactly happened, what was the cause, and everyone thought it was because I hadn't eaten or you know, I'm too skinny or you know, those kind of old... you, you're discounted. You're discounted even when you have these kind of issues. It was real, obviously I really passed out and they took me to the ambulance and took me to the emergency room and they checked my blood sugar, assuming my blood sugar's low, and we never really got any answers. And I may have had follow-up visits, but if I did, I don't recall. I think it was just one of those, oh, you're just a, you're just a teenage girl who probably didn't eat, even though I repeatedly tell them I definitely did. [Laughs] I definitely did. So, yeah, that was a frustrating situation.
[00:09:08] Jill (Host): So what did it take to finally get a correct diagnosis?
[00:09:12] Karen (Guest): [Laughs] I laugh at that because it's sad and a little bit nerve wracking. So, I'm actually a nurse by trade and I think for that reason it's made it even more difficult for me coming from a healthcare background and knowing almost, you know, at times too much, it was very difficult. After I had my first child, who's now 11, I experienced a lot of concerning symptoms, the tachycardia, I mean, my heart rate was never, you know, 110 was great for me.
So much dizziness. I felt like I was always anxious, but looking back, my heart rate was just always high. I don't think I actually was anxious. I think it's just that feeling. Your body goes into that fight or flight, and I had a lot of those moments where I felt really shaky. My husband always called it Bambi legs because I would just shake and shake and my little legs would shake, and my body would shake, and I couldn't really get words out very well.
I would have a stutter or I also felt like there were issues with my vision and I actually saw, you know, a doctor, my PCP at the time. He's like, you know, you're fine. We're gonna run some blood tests. Assumed it was something with my autoimmune system. And so, we looked into that, was sent to a neurologist, I was sent to a rheumatologist and they couldn't really find anything wrong. My magnesium was a little bit low. My vitamin D was definitely low, and so I just felt really passed on. You know, everyone kept telling me there's something wrong, but we don't know what it is, you know, it's autoimmune. It's just has to rear its ugly head, and then we'll find out, and me and my husband are like, look like I can't even take care of my child. This is an issue. Obviously, there's something wrong.
I would get a little bit better than I had my second child. They're actually 16 months apart - my boys. And I had the same thing after I had my second child, but it was a little bit worse where I really couldn't walk very well physically because of that shakiness, the trembling, you know, the Bambi legs.
I had trouble getting my words out. It was really scary. My heart rate felt like it was gonna just beat outta my chest. My blood pressure was really low. I had changed doctors and saw a new PCP, and fortunately he got me in that morning and he was like, I don't know what this is, but something's not right. And actually admitted me to the hospital where I was like, yes, someone is doing something. You know, he's admitting me to the hospital. We're gonna find out some answers. And unfortunately it ended up being the opposite. And the hospital I was admitted to I actually worked at, 'cause again, I'm a nurse by trade and the floor I was put on was the medical surgical floor that I worked on. And I was seen by a neurologist who I had worked with at the hospital at that time, and whenever they were discharging me, I mean, they did their due diligence, you know, I had MRIs in my brain and blood work, but they just didn't know what was wrong, couldn't keep me in the hospital, which is understandable.
But then as I was being discharged, one of the nurses told me that I should see a different neurologist after I'm discharged because he told everyone that I was faking it.
[00:12:29] Jill (Host): [Gasps] In your own hospital??
[00:12:32] Karen (Guest): My own hospital.
[00:12:33] Jill (Host): Where you had a track record of working...
[00:12:34] Karen (Guest): My own floor, working at the hospital I worked at, a doctor I worked with, the floor that I worked on, told the people I worked with that I was faking it and that hurt. I'm gonna get emotional. But that hurt me in a way that is indescribable because [with emotion] you know there's something wrong with you. You can't take care of your children. You know, other family members don't understand.
So, you know, you hear from people, oh, you're just lazy, or you need to snap out of it, you know, get yourself together. You need to eat more, you need to ... you know, all of these excuses. And my husband and I are beside ourselves, like there's something wrong. "No one is seeing this because you don't live with us. You don't see what it's like every day. You don't see how hard she's trying and she still can't do daily task. She still can't take care of herself and especially take care of my two very young children."
So to have a doctor that I had worked with, tell the people that I work with, my fellow nurses, that I was faking it, knowing some people would believe that ,was completely devastating to me, and I felt like I kind of gave up after that, even though I still really couldn't walk well, you know, I was still shaky, my memory was horrible. My heart rate was up and my just obviously had symptoms that were showing in ways of not just me reporting symptoms, you know, like my blood pressure and my heart rate.
It was, it was horrible. It was really hard. So after that, I, like I said, I felt like I kind of gave up. No one was listening to me. My husband and I had spent a lot of money. We did see a cardiologist who was wonderful. He did every test he could think of. He said, "you know what, this is outta my scope. I'm not sure what's going on. Something's wrong." Sent me to an electrophysiologist where I had an EP study and he said kind of the same thing. You know, "we know something is up. We don't know what it is."
So he really did try. They tried me on a lot of different medications. So that kind of gave me a little bit more power, because my husband was insistent, "you need to see somebody, you need to see somebody. Obviously something's wrong." This was a physician that you know, we trusted and worked with at the hospital as well.
I continued on with symptoms really hit or miss. Overall, I always had tachycardia, always felt dizzy. There were a lot of days I felt on the verge of passing out. I noticed a lot of memory issues and that brain fog and that severe fatigue, where you feel like your whole body is in concrete. And again, you know, you need to exercise, you need to make sure you're eating enough, you need to do this, do that, things that I was already doing and wasn't working.
So, I just, I really felt unheard. No one was hearing my husband and myself, and we were devastated and we were really at our wits end. So symptoms came up, I didn't go to the doctor. What are they gonna do? They've tried everything for me, right? They put me on all these different medications. So, I get pregnant with my daughter, who is now four, and I had what's called hyperemesis gravidarum, which is basically where I just threw up all the time. So, I passed out a lot during that time, assuming just from dehydration, but I saw a heart doctor again during that time. Again, he was wonderful. Ran a lot of tests, same kind of thing, you know, can't really find what's wrong. Had my daughter and this time I actually did pretty well, physically. I didn't have a lot of the intense issues that I had after the boys, and I was like, this is awesome, I'm doing good.
Until November of 2021. And that's when the POTS reality slapped me in the face. So I had this chest cold, it wasn't COVID. I had some kind of chest cold for two or three weeks. I was not getting over it. I felt horrible. I knew I was sick. I go to urgent care and by the time I'm there sitting, I stand up and I'm like, I'm gonna pass out. I could feel my heart. I knew my blood pressure was probably a little bit low. They bring me in, they're like, "no, we can't see you. Take you to the ER."
So they’ve taken me to the emergency room and the staff members there, that ER doctor and the nurse that I was assigned to, renewed my hope. I passed out three times while I was in the emergency room, while I was laying down in bed. My heart rate was all over. It was all over the place. Sometimes I would be a 100, sometimes I would be 130, and I just, I couldn't move positions without passing out, essentially. They gave me a ton of fluids, you know, they tried to really do everything they could, but it didn't change anything just like it did all the other times.
[00:17:33] Jill (Host): So, are you saying even up through this time you did not have a diagnosis?
[00:17:39] Karen (Guest): No. No diagnosis whatsoever. No.
[00:17:42] Jill (Host): Because in my mind I'm doing some math. You're 33 now. You were passing out at age 15. But you've had symptoms before that.
[00:17:50] Karen (Guest): Yep.
[00:17:51] Jill (Host): And so, you've gotten 18 years...
[00:17:54] Karen (Guest): Most of my life, yeah. As long as I can really remember.
[00:17:58] Jill (Host): Wow. Wow. I'm so sorry that you've been through this. Now, I have so many follow up questions.
[00:18:04] Karen (Guest): Yeah, please.
[00:18:04] Jill (Host): Now, first of all, did you keep working at this hospital?
[00:18:08] Karen (Guest): Yes.
[00:18:09] Jill (Host): Did you ever get an apology, an acknowledgement?
[00:18:13] Karen (Guest): Oh goodness, no. Never. And, and I wasn't brave enough to ask, because I really, like I said, I felt like no one believed me, and I'm sure people didn't, and it was obvious at that point when a doctor is telling people that, what do you do? I mean, the level of hopelessness was immense.
[00:18:35] Jill (Host): Ouch. I just, I just can't imagine feeling so bad and having that on top of everything. So as an insider, I'm curious, I guess, how often do the doctors say that somebody's faking it and do people always believe them and would you do anything differently now knowing what you know?
[00:18:59] Karen (Guest): So, I, just hearing from other people in the POTS community, it, it unfortunately seems that it is very common that we are not believed. And I think that's multifactorial. I think there are a lot of reasons that's the case. I do think one of the reasons is because we're females and so if we have an ache or pain or something wrong, we're obviously hysterical. [Laughs] Obviously we're have anxiety and depression.
[00:19:28] Jill (Host): But are doctors saying that about a lot of different women over a lot of different symptoms or is it seem like it's mostly a POTS thing?
[00:19:37] Karen (Guest): I think it's overall, but I think POTS in particular is affected. And as you ask other people in the community, how long did it take for your diagnosis? It seems like it takes a long time. You know, it's not even months. A lot of times for people it's, it's years. And the ones who get diagnosed early are considered the lucky ones, the fortunate ones.
[00:19:58] Jill (Host): Do they know what POTS is now?
[00:20:01] Karen (Guest): No. No. So I, I am very lucky, the heart doctor that I had seen, you know, at, at different touchpoints. After that ER visit, I made an appointment and he diagnosed me that day. And the relief I felt, wow. But then when you see other providers, they're like, "Ooh, POTS. Okay. Haven't heard of that yet." Or maybe they have, but they still don't really understand. They think maybe it's just affects your heart and they don't have a clear or in-depth understanding of how it really affects every part of your body, essentially.
[00:20:38] Jill (Host): Wow. I'm really sorry to hear that. I had kind of hoped that maybe awareness had gotten a lot better recently, because you're not talking very long ago. You've been diagnosed right, for under a year, correct?
[00:20:49] Karen (Guest): Yeah. I was diagnosed in November of 2021, so yeah, it, it's been under a year.
[00:20:56] Jill (Host): Wow. Do you think this has changed you as a healthcare provider, this experience?
[00:21:02] Karen (Guest): 100%. Absolutely. Absolutely. I think when we get in the, in the groove of, of working, especially when you're... you're taking care of people in a hospital setting, it can be difficult because a lot of times we're focusing on what's wrong with them. You know, what are their diagnoses, what's going on, instead of focusing on the person. And so, as a nurse, personally, it has enhanced my compassion and my understanding for people, and it's made me so much better of a nurse. Having insight and actually going through some of these medical things, you can understand a lot more where, where your patients are coming from. And a lot of them have been through a similar journey about a health issue or concern. So it's definitely changed me as a, as a healthcare provider. Absolutely.
[00:21:55] Jill (Host): Yeah, I know that I now am almost like a radical believer of anything a patient tells me. So, I'm a nutritionist. If someone told me that they feel good when they eat crayons, I would probably believe them because, yeah, I just... it's my policy now, believe the patient.
[00:22:12] Karen (Guest): I think it's a great perspective. I I love that. And, and if I could change one thing, I think that would be what it is. Just listen, really listen to what people are telling you. They're not coming just to tell you a random story. They're telling you their story and, and it's theirs to own and they're the ones going through it. And it's our responsibility in the healthcare field to, to listen.
[00:22:35] Jill (Host): Well, that's my next question because it does seem like doctors are pretty familiar with the script that in their mind is, oh, patient is faking or lazy or imagining it or just wants attention. And my question to you is, as somebody who kind of has been through that and now is maybe like a aware of some of the chronic illnesses that can make young women look ill with vague symptoms, how often do you think patients are coming into the hospital just because they've imagined something or they want attention or they're crazy? Does that happen so often that it's really reasonable for doctors to assume that?
[00:23:16] Karen (Guest): No.
[00:23:16] Jill (Host): Is that the horse that has the hoof beats that they're hearing?
[00:23:21] Karen (Guest): Such a great question and I appreciate you bringing that up, Jill, because it, it's absolutely [Laughs] so I laugh again just because it's just unbelievable to me. Personally, in my experience, I've never had a patient that I think was faking any of their symptoms, and I've taken care of people from all walks of life, all different environments. So, I definitely do not think it's the norm that people are coming in for treatment and they're faking it, or you know, like you said, being lazy or something of that sort.
[00:23:52] Jill (Host): Well, it's just funny to me because, you know, sure all of us want more attention or we all want an easier life, but I don't see anything about seeking medical care that would make your life more interesting, more fun, more easy. [Laughs]
[00:24:07] Karen (Guest): No, you want some bills? [Laughs] I mean, what is, I don't know. What do they think? We just love to pay medical bills because that's not fun. I don't know about you, but I don't enjoy that personally. I like to spend my money on fun things.
[00:24:21] Jill (Host): Right, right. I kinda have to laugh, like, what do you think is in this for us?
[00:24:26] Karen (Guest): There's nothing fun about it.
[00:24:29] Jill (Host): Do you have any advice for patients? And it could be anything at all. It could be on this topic, it could just be how can patients help you, help them? Anything at all about...
[00:24:42] Karen (Guest): Don't give up. Don't give up. You know yourself, you know your body, whoever you're reporting these things to, they don't. They're not in your shoes. They're not feeling what you're feeling. And I think in any situation, trust yourselves. Trust your gut and never give up. If you don't get an answer and you know there is something wrong, move on. Get another opinion. Just don't give up.
Keep a list of what's going on with you. I think having a journal or something of that nature where you can really track, you know, these are the symptoms I'm feeling. Maybe when those things are happening, any kind of evidence like that, that you can bring to a provider, I think is going to get you a little bit, a little bit further.
And unfortunately in this world, we do have to advocate for ourselves. And so, I think sometimes being brave, we don't have to be rude to anybody, right? But at the same time, we need to be comfortable using our voice. And I think sometimes, like myself in particular, I was very uncomfortable with that because I didn't want to make any waves or cause any problems. I just wanted to be a good patient who did what she was told and listened to everything that they said. But you really have to advocate for yourself.
[00:26:01] Jill (Host): Yeah. And I like what you said about any little shred of evidence. And I know it's hard in our community because so much is invisible.
[00:26:10] Karen (Guest): Yes.
[00:26:10] Jill (Host): And I have to laugh sometimes because when I go back through some of my old photos, I can sometimes see my attempts to collect evidence when I didn't know what was going on and there'll be like four pictures in a row of just my hands and feet because I was convinced that nobody's hands or feet would ever get that blue. Mine were so blue that they were almost black. But at the time, that was like the best I had as far as evidence. And not knowing what you're looking for, if you don't know what your diagnosis, makes it so hard.
But I think that is smart. And I know people are getting smarter about taking videos of any weird things. And I'm sure like we could probably have some funny website where people have the most ridiculous videos and photos trying to capture like, no, I'm not crazy. Something's really wrong.
[00:26:54] Karen (Guest): We need Dr. House, that's what I always feel like. I need Dr. House!
[00:26:58] Jill (Host): So I know a lot of people listening are gonna be interested to hear more about pregnancy with POTS.
[00:27:04] Karen (Guest): Yeah.
[00:27:04] Jill (Host): If you're able to talk about that, like...
[00:27:06] Karen (Guest): Absolutely.
[00:27:06] Jill (Host): ...maybe just a little more detail and especially like what were the harder parts? What were the easier parts? What was delivery like with POTS? Any tips?
[00:27:15] Karen (Guest): So, great with my first two children, my boys. As I mentioned, they're 16 months apart. So, fortunately while I was pregnant, I did pretty well. And I think part of that is because your blood volume increases when you're pregnant. And so for us POTS warriors, that means we have more blood volume to use, so I really felt better pregnant. But then once I had the baby, then it was downhill for me. I really struggled. I felt so tired, and I think a lot of my symptoms were masked by, I'm a new mom, or I have a newborn, where really I was experiencing those POTS symptoms.
So, it's hard because you don't wanna always compare yourself, but I tried to look at other moms I knew after they had a baby, you know, six months out, one year out. Are you still that tired? Do you have this amount of brain fog? How is your memory, cause I can't remember anything. So I, I struggled the most after I had my children.
When I was pregnant with my daughter, um, again, she's four, that was a very extremely difficult time for me because I did have the hyperemesis gravidarum and I threw up nonstop. I could not stop throwing up. So, for that reason, I was constantly dehydrated. So, while I was pregnant with her, I definitely didn't feel well. It was very hard for me to function. I had a lot of tachycardia, a lot of dizziness, a lot of episodes of passing out or nearly passing out. And I, I worked from home, thank goodness, because that's the only way I was able to hold down a job. I could sometimes work from bed if I needed to, and a lot of the time that's what I did.
So, pregnancy with my daughter looked much different for me than it did with the boys. I just, I couldn't keep fluids down. It was really hard. And then after I had her, it was almost like it flipped. After I had her, I felt better. It was like instant miracle. I gave birth and then immediately I was like, gimme some food. I wanna eat, I wanna drink my fluids. I wanna, you know, it was so different and I felt good physically after I had her.
It was just a different journey with each child, but I really, pregnancy wise, struggled the most when I was pregnant with my, with my daughter. And then, like I said, right after birth with my boys is when I started to have a harder time.
[00:29:41] Jill (Host): Okay. And can we ask, when you, at long last, finally got a diagnosis, did that bring treatments that helped? Are you more functional now or do you still suffer from a lot of these symptoms you've had your whole life?
[00:29:55] Karen (Guest): All of the above. [Laughs] I'd say all of the above. So to be honest, once I got the diagnosis, I was like, "what's in the heck is POTS? What?"
And for one, what a horrible acronym. So when people ask me what's wrong or I'm trying to educate my family and friends, I'm like, "I have POTS. Not the fun kind." That's what I say because people are like "POTS? Like, what are you talking about? You have some POTS and pans at home?" Or you know, whatever the case is.
When I got home and I looked at what POTS was, I just started sobbing because as I went through the list of symptoms, I had every single symptom and just this wave of relief and acceptance washed over me. You don't want there to be something wrong with you, but I've known for so long that something is wrong. So finally, I'm validated after all of these years, most of my life, I finally have validation. And part of me wanted to run and hide, and the other part wanted me to scream it from the rooftops and say, "I told you so! I told you so! See! You know, see!" Something, you know, I, I had that validation.
And I knew in that moment I had to decide: was I going to feel almost vengeful now that I have a diagnosis and know that something is wrong? Or am I going to use this as an opportunity to learn and grow and share my story and hopefully help others? And I chose to learn and grow and use my story to help others instead of carry it as a chip on my shoulder because that's not helpful, right? So it was honestly a huge relief when I was diagnosed for about the first week. And then after that, the grieving started, because I felt so poorly. You know, I was basically bedbound at that time. My husband was having to carry me to the bathroom and I couldn't get up. Even just lifting my arms, you know, was, was so difficult.
And my cardiologist has been fantastic. Fortunately, he treats a couple other patients with POTS, so he's very knowledgeable and he just flat out told me, "it sucks. POTS sucks. I hate it." And I'm like, "it does! Yeah. Thank you!" I think more doctors need to say that like, you know, "you have something. It sucks." There's no way around it because how validating to have your physician, after all this time, a physician saying you're faking it or everything's fine, you're just anxious. I have a doctor saying "this sucks!" And I'm like, "it does. Thank you so much. Thank you for telling me it sucks because it does and you get it and you know it sucks and you're helping me."
So we've made quite a few medication changes. I have to open myself up and you have to be vulnerable and you have to go with the flow. You just have to say, okay, radical acceptance, I hate trying new medications. I hate changing medications, but I found a regimen that is working for me overall.
So, in the last, I'm always so hesitant to talk about when I feel good for multiple reasons. I think, for one, I'm afraid then you can't be sick again, right? I'm afraid, like if I'm better, then you can't be sick again. People are gonna be like, "okay, well you were already sick. You were better. Why? Why are you sick again?" What's going on here is I'm scared of that cycling.
But at the same point in time, I've been dealing with that for years. So I never know what I'm gonna get. Some mornings, oh, most mornings, every morning I wake up with tachycardia. I'm laying in bed. As soon as my eyes are open, I'm like, oh gosh, here we go. And I feel awful. I feel just plain out awful. But by the time I get up and I drink, get all my salt, pickles for breakfast and Liquid IV to drink and get my fluids in and take my medicine, I start to finally feel better.
But still, there are still times that I'm not well and I can't really get out of the house or I know it's not a good idea to try, but something I've really tasked myself with is letting people see my sick because I wanna put on a good face, right? And you don't wanna be a person that complains all the time, or that is just always something is wrong.
But it was also important that people see me sick, because if they only see you when you're good, that's not helpful. That takes a lot of vulnerability. It's like a open wound. It's like you've ripped yourself open and you're letting everyone see what's inside. And for me, going somewhere with my cane and letting people see my legs being shaky, my hands being shaky, hearing my stutter, or having to search for words or not really knowing what's going on because of so much, brain fog was very difficult. But once I did that, people started to be a lot more understanding and I feel like they need to see that. And so, I encourage anyone listening today, don't be scared. We still have to live our life. We still have to get out there. Just because we have POTS, it doesn't mean that it's impossible. Whatever your condition may be, if you need to be in a wheelchair, get in that wheelchair and get out and be in the world because we need to be seen. We need to be heard and we need to show people how brave we are. We are so brave to do the things that we do and continue our journey through life.
[00:35:33] Jill (Host): That is so beautiful. I think I'm just gonna leave it there. Thank you so much. I'm so sorry for everything you've been through. I'm so impressed with your beautiful, generous attitude about all of it.
[00:35:46] Karen (Guest): Thank you.
[00:35:47] Jill (Host): And I'm so grateful for what you're doing to help the people that come after you, so I really, really thank you for coming on here and talking to us about this today.
[00:35:57] Karen (Guest): Thank you. I appreciate your time and in letting me share my story and appreciate anyone that's listening. Thank you so much.
[00:36:06] Jill (Host): Hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
[00:36:19] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you.
This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening.
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