E139: Diary with Becca, proud mom from Utah who developed POTS after food poisoning

Episode 139 May 20, 2023 00:43:39
E139: Diary with Becca, proud mom from Utah who developed POTS after food poisoning
The POTScast
E139: Diary with Becca, proud mom from Utah who developed POTS after food poisoning

May 20 2023 | 00:43:39


Hosted By

Cathy Pederson Jill Brook

Show Notes

Becca has a fascinating and most unusual story about her POTS trigger - food poisoning from 1000 year eggs while on a mission trip in Hong Kong. She is currently pregnant, and feeling extra POTSie as a result. Regardless, she is optimistic and shares her story to help others.

You can read the transcript for this episode here: https://tinyurl.com/potscast139

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Episode Transcript

POTS Diary with Becca [00:00:00] Jill Brook: Hello fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. So today we're speaking with Becca. Thank you so much for joining us today, Becca. [00:00:15] Becca: Yeah, I'm excited to be here. [00:00:16] Jill Brook: So let's start with the basics. Where are you and how old are you? [00:00:21] Becca: I am in Utah and I'm 26 years old. [00:00:25] Jill Brook: Okay. And there's actually more than one of you there technically. Do you wanna tell us about that? [00:00:30] Becca: Yeah. I am pregnant. I'm about 22 weeks and I have a baby girl who's 19 months and so yeah, we're a family of four here next year. [00:00:41] Jill Brook: congratulations., Okay, so before we talk about that, let's hear a little bit more about you. Can you tell us what you enjoy doing or what you are passionate about? [00:00:51] Becca: Yeah. I'm really passionate about my family. I love being around my kid and I used to be really into like athletics. That was my thing and so different now, but I've been trying to get more into like, Creative things that I put off for a long time cause I was so into sports and so I like to paint and I love to write, make jewelry like any creative type thing is my go-to. And yeah, I love playing with my baby girl. She's super funny and in insane and crazy and she makes me laugh. So that's my main thing these days is we just hang out together a lot. [00:01:31] Jill Brook: Oh, that's great. Okay, so what would your family and friends say about your personality? [00:01:37] Becca: Hmm. So I asked my husband, and he said like fun and likes to laugh and like silly. So I have no depth to me apparently, because like all the same things. But I made him dig deeper and he brought up the creativity and that I'm very honest and open and I'm pretty like straightforward and it's physically impossible for me to lie. I'm very just, yeah, you don't have to worry about that with me. And yeah, I like to have fun. We like to play pranks and do dumb stuff at Walmart and yeah, I'm trying to be more mature, but like, I'm a mom now, you know, I gotta grow. [00:02:19] Jill Brook: Okay, so your house sounds really fun. Can you talk a little bit more about pranks and or dumb stuff at Walmart. Any examples? Any stories there [00:02:31] Becca: It's all stuff that was really funny in the moment, and then when I go back and tell the stories, I'm like, That wasn't that funny. And so we didn't do anything crazy. We built forts on like the tallest level of shelving until we got kicked out. I don't know. We would just do stuff that we thought was hilarious and it really wasn't. It was just something to pass the time and make us feel like we were, you know, so naughty. But we weren't. [00:02:59] Jill Brook: That sounds fun. Okay, one more question about you. If we make you brag about yourself, what are you good at? [00:03:06] Becca: Before POTS I was really good at anything with my hands, like really good at sports that required hand-eye coordination, and drawing and stuff like that. And so that was what I was into. I loved to like learn how to like do different, like juggling things and I was always trying to like pick up new random little skills that I could, I don't know, show off to boys I liked and impress them and you know, do stuff at parties. And so that was pretty much what all my hobbies were centered around was I really liked using my hands. [00:03:40] Jill Brook: Great. Okay, so you mentioned a time before POTS. How long ago was that and can you tell us what your life looked like in the year leading up to when POTS entered? [00:03:53] Becca: Yeah, so before POTS, everything started when I lived in Hong Kong, I was doing a mission for my church there, and before that I was in college just playing a lot of tennis and going to a lot of dances. Pretty much just always moving. I was a bit of a spazz, honestly. I didn't know how to sit down. I didn't know how to calm down and I ate, exercised, ate, exercised, hung out with friends, and that was just my life on repeat. So yeah. And then I went to Hong Kong and things got a little crazy. Everything changed. [00:04:31] Jill Brook: Wow. Okay. You have so many fascinating things to think about. So what happened in Hong Kong? [00:04:38] Becca: There's not really one thing that started my dysautonomia. There was a lot of events that continued to add upon my symptoms. But the thing that seemed to kick it off was I had had. black eggs. They're called thousand year old eggs in Hong Kong, and they're super good. They sound better than you'd think that they would taste, but they they did not do good things for me. I just had like the craziest bathroom experience of my life. And then I just, that was the first time I came close to passing out. my like vision started to go and my hearing went like... I knew people were talking to me and trying to get in the bathroom, but I couldn't really understand. And eventually I somehow got the strength to like unlock the door. And when they came in, they, you know, were like, what's going on? And I couldn't really talk. I was super out of breath and I wasn't completely unconscious. And I just remember they called the mission nurse and they were like, sister Perry is passed out on the floor. I don't know if she can understand us or hear us. And I guess the nurse told them to give me some eggs, I don't know, like since when is that like the food that you give when someone's dehydrated, but So they like put some eggs in my mouth, gave me some orange juice, and basically, said a prayer and put me back on the bed over by the black mold and I just stayed there for a couple days and it was super intense. I couldn't move for a good like 24 hours. No one warned me about the Black Eggs , but apparently like it's something that some people don't do well with. You know what they say? Hospitals can heal the body, but some eggs in prayer is cheaper. So , that's what we did. I just laid there and prayed that things would get better and they did. I kind of recovered from that. But everything was different. From then on, I just started getting sick a lot more and I started getting like just that feeling that you're not quite getting enough air and like I just started collapsing everywhere. it was a lot of walking in the mission and it was really hot. It was humid, you know, like it's an island and things just kept progressing. And again, like the black mold in the apartment now staying, I don't know if that was like a big part of it, but I'm sure that contributed to things getting kind of funky. And so as the mission went on, I just kept getting more and more sick and I thought that I was just getting new Hong Kong viruses. Like I thought I was just getting like some weird flu like every couple weeks, and I started having facial twitches. The left side of my face went partially numb for like six months. My eyes started wigging out. Like I couldn't close my eyes without like holding my eyelids down with my hands to sleep, or else they would just like shake until they flew open. Things were just getting real weird. And so of course I saw a doctor and he told me, as most of us POTS patients have been told, you know, this is not a problem of the body. It's a problem of the mind and you're at the wrong doctor. [00:07:52] Jill Brook: Oh my goodness. Can I just interrupt for a second and ask some questions? Wow. I am so sorry. I'm blown away because this is such a unique story and this is definitely the first time I've heard of somebody being brought down by like an edible delicacy. Is that correct? I mean, for starters, can you tell us more about black eggs? What are they? [00:08:20] Becca: I wish I knew. I don't know what they do with these eggs. I just know they're black and they taste, they taste really good. They're almost like sweet, but they obviously aren't actually a thousand year old eggs, but they're like really salty. I started getting food poisoning all the time after that and I just was like, my stomach had a lot of problems since going on the mission. [00:08:43] Jill Brook: So my next question, how much longer did you have in Hong Kong? Because that sounds really tough to be so far away from home and to not be in a place that you're familiar with and to feel so sick all the time. [00:08:58] Becca: Yeah, no, it was definitely tough. There was a part of me that like just assumed that it would go away when I got home. I just thought like, these are Hong Kong viruses. Like that doesn't even make any sense. But that's what I was thinking at the time. And you know, the doctors were telling me it was anxiety. So I just thought, you know, I'll just push through this. And at that point it was at the stage where I could push through. I did collapse a lot. I never fully passed out, but I would just get so weak. I would fall to the ground and we'd get a taxi and they'd drive me home and I just figured, you know, this is how my mission is gonna be. But the last two weeks I remember were really hard at that point. Like I was just a constant like cloud. That I was walking through and my head was always in pain. It was like I was 20% on the way to being passed out. Just constantly, just always a little bit dizzy. And I just kept going cuz I figured it was just gonna go away. And I figured, you know, this is a weird form of anxiety where my mind isn't anxious, but my body is, I guess. [00:10:07] Jill Brook: So this was the Hong Kong doctors that said it was anxiety? [00:10:11] Becca: Yeah, that's the first doctor that told me it was anxiety. And when I got home I saw more doctors and it just kept going that way with, you know, something, what do they call it? Like psychosomatic, you know, it's just your mind, like it's not that you're not feeling the pain and feeling these symptoms, but it's coming from some subconscious anxiety. Cause I told 'em, I don't think I feel like anxiety or depression. And I have friends who really struggle with those things and they're totally healthy, you know? And so it never made a lot of sense. But I wanted to be anxiety, like I didn't wanna be sick. You know? So when we got home, things actually improved a lot and , I rested, you know, I was able to sleep better again and cause on the mission you don't have any days off or you have half a day off. And I was getting food poisoning a lot. And so once I got home, things just started to slowly get better. I never got back to a hundred percent, but I got back to 90% I'd say. And then the next downturn was when I started dating my now husband... we don't know if he gave me mono, but I tested positive for mono when I started dating him, and so I like it totally evened out. He kissed me while I had a cold sore like a couple weeks later, and I gave him herpes, so we're even I'm sure I got the mono. I was again, just another step down. I started having the heat intolerance and every time I got sick after that, I would be crawling around the house, not being able to stand up and go to the bathroom. I started healing very poorly from exercise. And it wasn't until I got married and I got on birth control and that like changed my period cycle. And that actually seemed to maybe stable things out like a teeny, tiny bit. But I knew that something was still wrong because I had like really bad eczema and I couldn't walk far to places and I just kept getting weaker and weaker. And then eventually I had like a P R P procedure done on my back cuz I had a lot of back problems from the mission. and I had this huge inflammatory response, which was not normal. And the doctor's like, I've done this to thousands of patients. No one's ever had a big problem with this. Like, you're the first person. And so I was like, okay, my body has something going on, you know? But we just didn't know what it was. [00:12:46] Jill Brook: at this point, nobody had diagnosed you with anything other than just anxiety. [00:12:52] Becca: Yep. At this point. [00:12:53] Jill Brook: Oh man. And so how long did it take to get a good diagnosis? [00:12:59] Becca: So by the time I was 23, it had been three years since I had been struggling and I could still function as a person. It was just really hard. So I, you know, sometimes couldn't make it to my college classes, but I always did make it back home. Like I wasn't really collapsing a lot, like I was on my mission. And so I just thought like, I don't know, maybe I'm stressed at school or something. And then the big turning point when I finally started finding some answers is when I had a mental breakdown. Like it was the first time I've ever had my emotions or anything that was, you know, maybe anxiety related that triggered anything physical in me. And so this is when I really believed it was truly anxiety causing this. You have this big stressful moment and your symptoms worsen and you think, oh, it is anxiety. But we all know that anxiety and stress can worsen any condition. It can worsen cancer, you know? And so I had this emotional attack and I had this like crazy stomach pain. I went to the doctor for it and the doctor found a heart murmur. And I was like, no, my heart's fine. It's my stomach. And she's like, no, your heart's not fine. You need to go to the doctor. And so I went to the doctor and I found out I have aortic stenosis. And so I was born with a bicuspid aortic valve. And basically I'll need surgery for it eventually, but it shouldn't be giving me symptoms right now. So they're just like, don't worry about it. Don't do anything intense with your exercises and you'll be fine. [00:14:38] Jill Brook: So is that when your heart valve has only two little leaves to it and it's supposed to have three? So some, some blood can leak? Is that what that is? [00:14:48] Becca: Yeah, exactly. And so the opening through my aortic valve is half the size that it should be at this point in its progression. And so when I heard that news, I went home and I had just had this massive stomach attack. I hadn't eaten for a day. And for the first time ever, I stood up from the couch and I just collapsed to the ground and I had this pulsing pain in my heart, and it was like my heart rate slowed down and it felt like the pressure was too high and like my aorta was stretching. And every time I tried to stand up, I'd get super dizzy, way more than I would have on the mission, and I would get this pulsing. And so I was like, is this the stenosis or like, what's going on? And it just was different than anything I'd experienced before, but it was so much quicker on the mission. It would come on slowly, this dizziness and this one, it would just hit me. And so when I would go to doctors after that, I think it took me a long time to get diagnosed with POTS because I was focusing so much on this pulsing pain, that I wasn't like really telling them about the lightheadedness and the tachycardia that would follow and all these other symptoms. I would go to the doctors and be like, what's this pulsing pain? they'd be like, I have no idea. And so eventually after I got pregnant, I was finally diagnosed with orthostatic hypotension. So we knew I had a blood pressure drop upon standing and maybe the full pain has to do with that. That pregnancy with my first kid was when I became veteran for the first time and I had a lot of strange cardiac issues. I had like hemiplegic migraines, which are like mini strokes I guess, and those were terrifying, but we still didn't have any answers other than this aortic stenosis, which according to my doctors shouldn't be giving me symptoms at this point. [00:16:52] Jill Brook: And can I just take a second to say how ironic it is that, it took you going in feeling like you had an anxiety based problem, and that's how you got the physical diagnosis. And all these times when you went in for physical problems, they wanted to give you the anxiety based diagnosis. Like it almost makes me wonder, maybe we're going about it all wrong. Maybe when we've got these POTS symptoms, we should go in saying, oh, doctor, I feel so anxious, and see if they come up with something better than anxiety. [00:17:21] Becca: Yeah, I never thought about it that way. It's so true. [00:17:24] Jill Brook: oh man. Okay, so now your first pregnancy and you're having, did you call them hemiplegic migraines? [00:17:34] Becca: hemiplegic migraines. I think I'm pronouncing that right, but I don't know for sure. [00:17:38] Jill Brook: And can you say more what that is? [00:17:41] Becca: Yeah. So with the one I got what happened was like, it started in my hands. I had some numbness that was spreading up my fingers and then it spread to my face and it was all along the left side. And so I thought I was having a stroke and cuz I knew, like with my stenosis, my aorta was already having some issues and I have a lot of pressure in my carotid artery sometimes. And so I was like, oh my gosh, I'm having a stroke. And I started having double vision and those were like the main symptoms and I just felt a little off in my head. Like I couldn't focus. But it was probably just a hemiplegic migraine, but by the time we could get testing it was gone and so I just had like a lot of other migraines as well. And so that's the diagnosis we put to it. We don't know for sure what that was and it hasn't happened this time around. But basically [00:18:36] Jill Brook: Okay. That sounds terrifying. [00:18:38] Becca: it was scary , but it went away after like 30 minutes and then never happened again. And it was in my second trimester with that first pregnancy that things just got a lot better and I started exercising again and like really wasn't hugely symptomatic. I still got the pulsing pain upon standing and like if I increased my exertion, but it wasn't anything that really limited me from taking care of myself, you know? And so I had my baby. Of course, postpartum was insane for its own reasons. And I have EDS, I dislocated my tailbone. They were hard things, but my POTS was pretty under control. As long as I didn't stand still, I could still walk around and I could still take care of my baby with some help, you know? And then crap hit the fan. [00:19:29] Jill Brook: No. [00:19:30] Becca: Well, I got mastitis and so we all know, you know, bacterial infections and POTS is not a good thing. [00:19:37] Jill Brook: Yeah. And you said when you got what? What did you get that sent it all off? [00:19:42] Becca: mastitis, so it's an infection of the breast when you're breastfeeding and it's fairly common, but if you have dysautonomia, it is obviously more intense. And so that was the first time things ever got concerning enough to where the doctors were like, okay, I'm paying attention now. I went into the doctor to get antibiotics for my infection. And then they're like, what's wrong with you? Like, why can't you sit up? You seem like you can hardly breathe, you can hardly talk. And I was like, this happens every time I get sick. It's been like this for years. And they're like, what ? Are you serious? This is not normal. And they took my blood oxygen and it was okay while I was laying down. They're like, can you stand up and we'll take your blood oxygen? I'm like, I really don't want to. And they're like, we need to. And when I stood up and started walking, it dropped to 82. [00:20:36] Jill Brook: Oh wow. [00:20:38] Becca: You need to go to the ER right now. And I'm like, this happens every time I get sick. I wasn't saying this was my husband saying this cuz I couldn't talk. I had essentially passed out at that point and they had me on a wheelchair. I had my oxygen mask on, but my husband was like, you know, rolling with me through the halls and he was like, ah, these nurses, everyone always freaks out when they see you like this, but we know it's just what happens when you get sick. I don't know. I guess they thought it was panic attacks induced by sickness. I don't know, like, I don't know what these doctors think when they diagnose it with anxiety, cuz like anxiety doesn't get worse upon standing or when you exercise, you know? But I guess I just, I wanted it to be anxiety. I didn't want to be sick. So at that ER visit, they didn't find anything except for my vitals all being super terrible. You know, they're like your oxygen, your heart rate, your blood pressure is all terrible. but you're not dying, so go see your primary care again. You know? And so I just went home and that was the first time when I really felt like I was gonna die and I didn't know what was going on. It was definitely the scariest thing I've ever been through. That's when the dysautonomia affected more than standing, but my ability to like go to the bathroom and pretty much all the autonomic functions just started going haywire at that point. And so that's when I finally went to my cardiologist that I had been seeing for my stenosis for a year at this point. And he, funny enough, is a POTS specialist and he has been a POTS specialist for years, and he's the number one recommended cardiologist that works with POTS in the Utah Valley and he had no idea that I had POTS. [00:22:25] Jill Brook: Oh my gosh, because he just was too busy looking at what else you had going on? [00:22:29] Becca: Yeah. We were trying to figure out the pulsing pain and, you know, keep the stenosis on track. And so when all this other stuff started happening, he was like, I don't know all your issues, but yeah, you probably have POTS, like that's at least one of the things going on. And eventually just this year I got my EDS diagnosis and that's how it all started. I just got that infection and after that I actually got five infections in a row and I was bedridden for a good four or five months during that time, and I couldn't even roll over in bed without my heart rate going up like 60 beats per minute. and I couldn't read a book to my child. I couldn't hold her. I couldn't play with her. Not a fun time. But [00:23:20] Jill Brook: sounds horrible. Can I just ask kinda how you dealt with that mentally? [00:23:24] Becca: so at the time I think I was too exhausted and just focused on surviving and trying to breathe. That I didn't really feel emotions of sadness. It was almost like my conscious brain wasn't really super active. I was just too tired, you know? And so for me it was just survival mode. And eventually I got on the POTS exercise program, I forgot what it's called, where you like do recumbent bike and you start doing strength training. and that was the most difficult thing I've ever done. And I'm like a former athlete and I like do marathons and I run races and I do like tennis competitions, but I have never done anything as hard as trying to exercise during that time. It was so, so rough. But the happy news, here we go, [00:24:19] Jill Brook: Yeah. Yeah. We want some happiness, please. [00:24:22] Becca: Yeah. After three months of doing that training, and having a lot of hard time during that, like I would be having a better day and then I collapsed on the floor and I'd have to wait till somebody found me in the kitchen and carry me to the couch. Even though I still was having a lot of hard moments, I made progress within three months. Like going from not even being able to turn on my bed, like that exertion was too much to walking up to 10,000 steps in one day. And it seems crazy to me that that happened cuz it was so severe and then three months later I was taking care of myself and my baby again. [00:24:58] Jill Brook: What a story of hope for anybody who's feeling rock bottom right now. [00:25:04] Becca: Yeah. Everyone's situation is different and I still struggle with a lot of things and since then I got a concussion a few years ago and I've re-concussed myself, so that dropped us off again for a bit. And so, you know, I know it's probably gonna be an up and down road and I just got my diagnosis of POTS about six months ago and I got the EDS diagnosis just last month. So I know that there's still like a lot of treatments I haven't tried and there's still so much hope for different things I can do. I just found this podcast a few weeks ago and I'm already learning so much and there's so many more avenues to explore, so that's super exciting and I'm pregnant right now and so my POTS has gone insane again. But I won't always be pregnant so it'll get better. [00:25:53] Jill Brook: Wow, you sound incredibly mentally tough. Can I just ask what helps you cope? [00:26:00] Becca: definitely my daughter. She is my world. Through all of this, she has been something that every day, like she makes me laugh and she gives me reason and she gives me hope. I really don't know what I would do without her. And not that you need to have kids to be happy, but like having something small and cute and just a little bit helpless that you can like hold. Something that just loves you for no reason. If you have one of those things in your life, like get a puppy or a bird or a baby or something, you know? And that helps me so much. And she's just like, Ugh, she's the best. Her name is Faith. I felt since I was 12 years old that I was gonna have a girl first and I was gonna name her Faith, but I didn't know why. And now I totally know why. And like, I'm gonna cry. but she just like, gives me faith in every day that no matter how uncomfortable a lot of moments are, cuz there's a lot of really uncomfortable moments that there's hope and there's still like purpose for me, even though I have these concussions. So I can't really use my brain a lot. Can't look at screens. I can't think too hard for too long. and I can't really use my body right now with how my body is reacting to the pregnancy. But I can still go lay down on the floor in my daughter's room and hold her hand while she tries to go to sleep. And it makes her so happy. And I'm doing absolutely nothing, which sometimes that's all I can do is nothing . I can lay there, you know, in the silence in the dark where my head and my body are like doing all right and it's still is something that like, I can make this little person happy and she makes me happy. And so I'm just super grateful for her. I could go on all day, but I'll just stop there. I really like her. She's a pretty cool kid, so [00:27:59] Jill Brook: Aw, that is beautiful. And someday, when Faith is old enough to listen to this, I think she's gonna be tickled and feel like she was lucky to have you. Aw. [00:28:10] Becca: And she loves to be tickled. She's always like her arms up and she's like, on pit. Mama tickle it. She's very demanding, but also she demands really cute things. So I don't mind. [00:28:22] Jill Brook: So it sounds like you've managed to keep the laughter going in your household no matter what. [00:28:28] Becca: We try. It's not always easy, of course, but my husband and I, that's something that was the reason why we connected and dated and got married, is we like to laugh. We like to make things light, and yeah, it's definitely something that I feel like I couldn't get through things as well without it. And my daughter, thankfully, is super silly and she's 19 months old and she knows how to make jokes. It's wild. and yeah, like I just am so glad that I have this little person that can make me laugh. She makes jokes all the time and she keeps me on my feet. Not literally, but you know, figuratively, she keeps me mentally on my feet. [00:29:14] Jill Brook: What an awesome skill. You know, it's funny, when I was struggling most with my health, I went from never thinking twice about humor or comedy or comedians, just, you know, whatever, to realizing that I value people who can be funny, especially when there's not anything funny going on. I think they give such an enormous gift to the world and they can alleviate so much pain. And now I hold up comedians as almost like these very, very treasured people in the world, and I'm just so tickled that at 19 months, your daughter already knows how to make jokes like, oh man, I can't wait to see what she's saying when she's a little bit older. What a great thing to have in the household. [00:30:02] Becca: Yeah, she is much appreciated. Every time I'm having a hard moment and I just feel like, you know, what's the point? Like half the days are completely useless. And then the other half of the days are still really, really hard. And then she just walks in and she does something silly and she like tries to beat box and she's dancing and she just makes me laugh and everything just seems a little bit better. [00:30:29] Jill Brook: Oh my gosh, that sounds amazing. Now, should we skip the speed round or would you enjoy the speed round? [00:30:38] Becca: Yeah, for sure. Can do a speed round. [00:30:40] Jill Brook: Okay, perfect. And whatever comes to your mind first is fair game. What is your favorite way to get salt? [00:30:50] Becca: My husband hates watching it, but I like licking the salt off of chips. So I like the chip part. Isn't that great for me, but I don't know. Something about just eating seasoning. Now I have an excuse for it though. I've always done that and now I'm like, it's for my health. You can't judge me. [00:31:06] Jill Brook: What is the drink you find the most hydrating? [00:31:10] Becca: Relight. [00:31:11] Jill Brook: What is your favorite time of the day and why? [00:31:15] Becca: Snack time. [00:31:17] Jill Brook: Oh, good answer. [00:31:18] Becca: Food is one of the things that my body still likes. [00:31:24] Jill Brook: Yeah. Right on. Okay. Where is your favorite place to spend time and why? [00:31:30] Becca: Hmm. I like my recliner a lot. But yeah, I don't know. I guess I'd say just around family and friends. I like being around a lot of people just having chit-chat going. Something like anywhere where there's life going around me. [00:31:46] Jill Brook: How many doctors have you seen for what ended up being POTS or related things? [00:31:51] Becca: oh, my. 20 to 30 maybe. [00:31:55] Jill Brook: How many other POTS patients have you ever met face-to-face? [00:32:00] Becca: I think just one. [00:32:01] Jill Brook: What is a word that describes what it's like living with chronic illness? [00:32:07] Becca: Limiting. [00:32:08] Jill Brook: What is some good advice anyone ever gave you about anything? [00:32:12] Becca: Not to like sound bitter, but set expectations low. Just cuz if I don't expect to be able to do too much, then whatever I can do, I'll just be stoked about. And so if I just realize that you know, things are gonna be this way, maybe not forever, but they are this way right now, then it's a lot easier to be content with the smaller things, and that's helped me to be a little bit happier. [00:32:43] Jill Brook: That sounds very wise. What is something small or inexpensive that brings you comfort or joy besides your daughter? [00:32:52] Becca: My rice bag. [00:32:54] Jill Brook: Oh, the little pillow type thing. [00:32:57] Becca: Yeah, you like put it in the microwave and it gets warm cuz my feet have lost the inability to be warm themselves. And so I love that thing. [00:33:05] Jill Brook: Oh, very nice. Okay. Who is someone that you admire? [00:33:08] Becca: I don't have a role model figure, but I definitely have a lot of people in my life who I'm super grateful for. My husband, he's awesome. He's obviously had his fair share struggles with all of this, but he's still always so open to help me. He carries me up the stairs, he gives me massages at 3:00 AM you know when my legs are hurting. He shampoos my hair in the shower so that I have, you know, less chance of collapsing when I'm naked and wet and cold. And yeah, I just appreciate everything he does and I make sure he knows how lucky he is though. Like there's this kid in fourth grade that I heard him talking about me in the lunch line, and he said he wanted to shampoo and condition my golden blonde hair. And so I'm like, Steven, you lucky dog. You get to shampoo my greasy head and live Tyler from fourth Grade's Dream. So count your blessings! [00:34:10] Jill Brook: That's awesome. Well, I already love your husband. If he would ever want to be interviewed for the podcast, I would love to speak with him. Okay. Next question. What is something you are proud of? [00:34:22] Becca: I'm proud that I've been able to not let myself stay in any like dark mental space for too long and that I still find the joys and the things that I can in life with the restrictions I have. [00:34:38] Jill Brook: Yeah. Bravo. Okay. What is the very toughest thing about pOTS or chronic illness. [00:34:46] Becca: Hmm. definitely just the physical sensations. Just how it feels, the not being able to catch your breath, your heart beating outta control. The cardiac symptoms are really hard for me and a lot like the weakness. I have a lot of arm weakness and some days like my husband will need to feed me my food, and it's just hard just feeling these sensations and knowing that there may not be a day that they're completely gone and you know that they can come up at any time, and so trying to mentally cope with all that, [00:35:20] Jill Brook: Yeah, what is an activity that you can enjoy even when you're feeling really potsy? [00:35:28] Becca: Listening to podcasts, listening to this podcast. I love this podcast, and you're so awesome. I think you're so talented in the way you host, the questions you ask and the way you make people feel. Like, I just love listening. It's always an uplifting experience, and I'm just really grateful for the whole Standing Up to POTS community in what you guys are doing. [00:35:50] Jill Brook: Well that is so kind and thank you so much. And there is a big team that makes this possible, so I don't deserve all the credit, but it's gonna make everyone so happy to hear that because yeah, there's just too much suffering and it makes us happy if maybe a tiny little bit of it is a tiny bit better for this stuff, but thank you for saying that. Okay, next question. What is a gift that you would have sent to every POTS patients on earth if you had infinite funds? [00:36:21] Becca: Hmm. A personal helper to just like do the dishes and someone who is really good at giving massages and knows how to cook and do all those things. And then they would also come with like a little tamagotchi or something. The Tamagotchi could just come in their pocket and all of us POTS people around the world could sit on our couches and, I don't know, just pretend we're kids again. [00:36:46] Jill Brook: Wait, what is that Tamagotchi? [00:36:49] Becca: Oh man, it's a virtual pet. And there was something that I was obsessed with when I was a little kid and whenever I'm feeling nostalgic, I just think of them all the time. Like I haven't played one in like 15 years, but if I could just have one in my hands right now and play it a little bit, I feel like that would be so cool. [00:37:07] Jill Brook: Very nice. Well, that is an excellent answer, A personal helper that I think that's the best answer I've heard yet to this question. What is something that you are grateful for? [00:37:17] Becca: I'm grateful for the people in my life who have helped us out and like, who try to understand POTS and dysautonomia better. I have, you know, friends and family who will listen to the podcast or do Google researching and just having people who feel how I feel like understand what's going on is super valuable to me. Cuz there's people who, you know, I'll be like getting all the tests done and I'll say, you know, the lupus test came back negative and I'll have a friend who's oh, thank goodness you don't, you don't have lupus. That would've sucked. And it's like, well, yeah. I mean, I don't want lupus either, you know? But no one realizes how disabling and hard dysautonomia can be, and they just don't really understand it. And so when people put in that effort to learn about it, and it also helps them know how to help us out better and. I really appreciate that cuz like, you know, it's tough. It's a pretty rocky diagnosis and sometimes people are like, congratulations, you got your diagnosis. Are you so happy? And I'm like, no, I wanted to just have bad anxiety and then find a magic pill that would make me feel better. It's funny, I hear a lot of POTS people on the podcast talk about how they were so happy when they finally heard it wasn't an anxiety and they got validated that they had a real illness. And for me it was the opposite. Cuz you wouldn't have somebody say like, dude, I just found out my headaches are from a cancerous tumor. And then have the response be well, congratulations. You found it. They'd be like, oh man, I'm so sorry. That sucks. With this condition, if people could just like understand, like it's actually a pretty big deal and it's super tough. And yeah, just to have a little bit more sympathy. [00:39:10] Jill Brook: Yeah, so shout out to anybody who does not have POTS, who's listening to this right now and is listening to understand for loved ones. We appreciate you. [00:39:18] Becca: sure. You guys are all awesome. [00:39:21] Jill Brook: Okay. I just have a couple more questions. Can you finish these sentences? I love it when? [00:39:29] Becca: I get a massage. [00:39:30] Jill Brook: Ooh, that would be mine too. Okay, next one. I hate it when... [00:39:36] Becca: my heart is going crazy [00:39:40] Jill Brook: people might suspect I'm a potsy when. [00:39:44] Becca: when they're sitting behind me and my head is bobbing up and down cuz I'm doing my butt clenches cuz I'm preparing to stand up. [00:39:52] Jill Brook: Nice. Next question. Have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was the weirdest place? [00:40:02] Becca: lots and lots of weird places. Probably like in the metro in Hong Kong with like 30 little feet pressed up against the perimeter of my body. Yeah. Not fun place when there's not much space to lay down. [00:40:16] Jill Brook: Oh man. Is there anything you'd like to say to your fellow POTS patients who might be listening? [00:40:23] Becca: Yeah. I think it's important to just realize that there's always a purpose you can serve no matter where you feel like you are on that spectrum of disability. There's always something that you can do to do good. And like that's coming from somebody who even just having this conversation and doing this podcast, I probably won't be able to use my brain much tomorrow, like, and you know, I really don't have a whole lot of use of my body and my mind right now, but there's still like this little girl that needs me and I can be here for, and I feel like everybody has something, you know, something that they can give to the world. and also to just try not to compare. That's something I've struggled with, know, other people who are finding a little bit more solutions or their POTS is a little bit more under control. And I think it's awesome to hear other people's stories so we can collect data, connect, support each other and learn, but you know, to not compare and realize we all have different bodies, different comorbidities, and we're all on a different part of the journey. [00:41:29] Jill Brook: Oh, that's just beautiful and so poignant and so wise. I think I wanna just leave it there and make those the last words. Becca, thank you so much and I thank you for making this your priority today and sharing this and you know, the fact that you probably tired yourself out for the next day and a half that that means a lot to me, and I think you've said so many important and beautiful things that it's gonna help a lot of people. I just thank you for making that sacrifice and I know that everybody listening is wishing you all the best going forward. I hope we'll talk to you again in a year and we'll hopefully hear about all kinds of good surprises that have come your way. [00:42:13] Becca: For sure. Thank you so much for having me on. I really appreciate it. [00:42:16] Jill Brook: Hey listeners, I 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.

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