Episode 68 – POTS Diaries with Becky from WV

00:00:01 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 wonderful people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their story. So today we are speaking with Becky who kindly agreed to speak with us so that we might all benefit. Becky, thank you for joining us today.

00:00:54 Becky (Guest): Yeah, absolutely.

00:00:56 Jill (Host): So, can we start with basics? What is your age? Where are you? And how come you have a totally professional podcast set up?

00:01:04 Becky (Guest): [Laughs] I am old! So I am almost 44 years old. I am in West Virginia - that is the actual state, not Western Virginia, 'cause people get those confused. And I am a nonprofit marketing person so I do a lot of voiceover videos and I run my own podcast as well.

00:01:29 Jill (Host): Very cool. Well, I hope to ask you a little bit more about that in a minute, but maybe first we can start with a couple other basics. How would people describe your personality?

00:01:41 Becky (Guest): Before all my chronic illnesses began like forming about four... four years ago, and before that I was out and about in the community. I ran a ministry team where we went out and we fed homeless people and met them on the riverbanks and up on the in the hollers(?) and wherever they were to provide them with like the basic needs that they... they needed to have fulfilled. So I was out and about all the time. I also worked for a national nonprofit, and was the marketing person for that. And that can be extremely busy. I’d work 80-90 hours a week.

00:02:21 Jill (Host): Wow!

00:02:21 Becky (Guest): Yeah, yeah. Now, not so much. I have a four year old. All my symptoms for all my chronic illnesses primarily started happening after I gave birth to him. Yeah, it's it's very interesting. Yeah. So I want to be like the very active mom, but most of the time I'm sitting with my feet propped up now. So, but he's 4, so we can play Mario together. So, it works out...

00:02:51 Jill (Host): Oh good, that’s perfect. OK, so if we were going to focus on a little more about you, it sounds like you're very passionate about helping people...

00:03:02 Becky (Guest): Yeah.

00:03:03 Jill (Host): ...in the nonprofit world. What else? Do you have any other passions, interests that would help us get to know you?

00:03:10 Becky (Guest): I am one of those people who like any form of art, so I paint, I draw, I crochet, I design my own crochet patterns and sell them. I have the [inaudible] and every crafting product, probably in my craft room right now. [Laughs] So I'm just like very passionate love making things. And I feel like it's like creating beauty from nothingness, it drives my heart.

00:03:38 Jill (Host): Very neat. OK. You mentioned that your POTS started with your pregnancy. What was your first sign that something was weird?

00:03:50 Becky (Guest): Yeah, so my little one was conceived after 12 years of infertility and trying. Turns out I had really severe endometriosis which was driving that, but I didn't have most symptoms for until after I gave birth to him. So about six months after I gave birth to him, I started getting a chronic migraine every day instead of just like a couple times a month. I literally had a migraine every day for six months. And then it started like abdominal pain and cramping, started going from like you know, during the monthly cycle to now it's 24/7. I ended up having three abdominal surgeries in a span of a year and two months, two of which were pretty major five plus hour surgeries...

00:04:42 Jill (Host): Oooooh.

00:04:43 Becky (Guest): Yeah, where they removed endometriosis and other random tissue from places it didn’t belong. Like, 8 different organs were impacted in my stomach and abdomen area up into my diaphragm.

00:04:55 Jill (Host): Just in case there's people listening who don't know what endometriosis is, do you mind just explaining it quick?

00:05:02 Becky (Guest): Yeah, absolutely. So endometriosis is... it's a disease where tissue that's similar to what would line the uterus is found outside of the uterus and it impacts your organs. So, like I had this tissue on my abdominal wall. It was up on my diaphragm, it was on my lungs. It was eating the inside of my appendix from the inside out. It was... it had fused my right ovary to my pelvic wall and that was probably what was causing the bulk of my pain, covering the entire top layer of my liver, on my bowels and my rectum, and like all my female organs were like just surrounded with this tissue. So you can imagine that if it... It something doesn't belong somewhere, eventually it's going to cause pain. That's what kind of started my journey, and then after three surgeries in the span of about 14 months I started having POTS symptoms and it was actually my endometriosis specialist that suggested POTS.

00:06:12 Jill (Host): Wow, that's a good endometriosis specialist. So just to make sure I have this correct, you had years of infertility and then you successfully had your son. And then you had these surgeries for the endometriosis, and then that's when the POTS started?

00:06:31 Becky (Guest): Correct, it was after my third endo surgery that I started having like... it started with like electric shocks down my right leg primarily. So, I have endometriosis that's actually pressing down on the sciatic nerve. So they started just treating that. And then it kind of went from, because you can't really remove it off the sciatic nerve easily and there's only like two doctors in the world that do that and none of them are in the US [Laughs] So my specialist didn't feel comfortable doing that and so she was like, “What we can do is treat it with like gabapentin and nerve medicines.” And so we started that route and then, um, it got to be where both my legs were just aching all the time. So we started looking into blood flow in my legs, which is what led to the POTS. So it turns out I do have vein insufficiency in both my legs and there's reflux of the vein - the veins in both my legs at the hip area. So the blood is actually like flowing the opposite direction, which could contribute to POTS-like symptoms.

00:07:41 Jill (Host): That was my first clue, too! Yeah, the vein doctor looking, taking that ultrasound, looking at those veins and saying, “Oh the blood’s flowing the wrong direction. That's really not supposed to happen in a relatively young person.”

00:07:59 Becky (Guest): Yeah, and the vein specialist told me... she said, “There's no way that only this is causing all the pain you're having in your legs.” And of course she... she said, “You need to lose weight,” and I'm like, “I'm down 200lbs from six years ago. So like, I don't think the weight is a problem.” It's just that was the first time she saw me. She put me on some medicine for blood flow and then all this tachycardia started happening, where it was like constant. I would stand up. I would start having chest pain. I would start feeling lightheaded, my hearing would start going, and then I would start getting the darkness that surrounds from the outer outer edges of the eyes in, and then eventually I started passing out. So, I had all those symptoms and it took me almost a full year to get a cardiologist to even look at me or do any testing.

00:08:52 Jill (Host): Wow.

00:08:53 Becky (Guest): They didn't see a need for it. They felt like I could just use compression gear and salt and I would be fine. But once I started having those symptoms, my PCP luckily is very knowledgeable and she was like, “This is what you need to start doing now and then we'll find somebody.”

00:09:09 Jill (Host): Wow, OK. So, during all that time, was your PCP or your endometriosis doctor on it right from the start? Or did you have a period where you just wondered what the heck is going on with me? Am I crazy?

00:09:25 Becky (Guest): Luckily, like they were both kind of pushing for me to see different specialists when the vein specialist said, “This is all I'm going to do. I can't, you know, do a surgical procedure to open up your veins anymore. It's not bad enough for that or whatever,” then my PCP is like, “OK. Well, let's treat the symptoms until we get you in with somebody else.” It took her calling the cardiologist office personally twice to finally get them to agree to see me as a patient 'cause they felt like my symptoms were mild. She diagnosed me in office by orthostatics, so just checking my heart rate from laying to standing and then back to laying, and also my blood pressure and making sure that didn't really go crazy. So I was diagnosed by her from orthostatics and the vein specialist from orthostatics and the cardiologist said there's no way someone of my age could have it. I did officially get my cardiology diagnosis last week. So it's like, really, really new, as far as the official cardiologist diagnosis, but we do have that and I am now on a super low dose of a beta blocker that will be increased monthly until we get the right dose.

00:10:45 Jill (Host): So even though you didn't have your cardiologist's input until recently, it sounds like you've kind of had some clues as to what was up. Have you been able to find things that have helped? Like, have you stopped fainting, and do you still get the vision blurring out? Do you still have the leg pain? Like where are you with all those things?

00:11:08 Becky (Guest): Yeah, lots of adjustments. So I bought a wedge for leg pain days, so I will prop my legs up on this wedge and even sleep with my legs on the wedge, if it comes down to that. Obviously, I still take my gabapentin at night to help with the nerve pain. That also actually helps with some of the adrenaline dumps that I have at night. It kind of helps me sleep and minimizes those. Increasing salt intake - I went from not cooking with any salt at all for my entire life to now salting every food that I eat and adding salt or electrolytes to every single drink that I drink. I decreased caffeine intake and also just resting a lot more. I have reduced the amount of times I pass out. I've gone from like three or four times a week passing out or almost passing out three or four times a week to once a month or so, so that's good. So I'm hopeful that treatment will help. My cardiologist did say that - he called it a benign form of POTS, which I didn't understand. So finally I got it from him. He felt like I have a mild form of POTS and I I said, “If I have a mild form of POTS, I don't want a severe form,” because it impacts my life in every aspect of my life. Like all the time. And I have to be very conscious of it and it's it's very annoying. [Laughs]

00:12:39 Jill (Host): So let's... let's break that down a little bit. So even though you found some hacks and you're a little bit better... let's start with your work life, 'cause it sounds like you are very dedicated to your work and it sounds like you're still doing it, but you had mentioned that you would meet people on the riverbank, which first of all that's super cool. Like, that makes me really picture of West Virginia. There's no riverbanks near me. [Laughs] But like how, how is your work different now? How are you managing and is it working out?

00:13:14 Becky (Guest): Yeah. So, we don't do that anymore. My body just won't allow that to happen. And with COVID it was kind of a natural transition out of there to like, we send care packages to like our homeless vets and stuff like that instead, but we kind of nixed that. I guess... I lost track. I'm sorry - brain fog.

00:13:37 Jill (Host): Yeah, I'm just wondering if... if you're still able to work and what kind of changes you've made.

00:13:43 Becky (Guest): Yes, so I do still work. I work full time. My workload is about 35 to 40 hours a week. My boss has been amazing. I actually transitioned from one job to another right before all my chronic stuff happened. My little guy was about 10 months old and so I'm in the perfect place for the perfect time, right now. I work from the office three days a week and I work from home two days a week and that is very flexible, as far as the days that I'm at home. So if I'm having a worse day, I can be at home if I need to. At the office, instead of sitting in a normal chair most of the time I have my normal chair, but I have my legs propped up on my desk, like all the time. So people might come in and think that I'm, you know, lounging..[Laughs]... but but that is my life and I also will take naps under my desk, sometimes, if it's a really bad day and I'm horribly exhausted. I will take a nap under my like, I will lay down on the floor and take a nap at lunch. Just whatever I can do to power through.

00:14:53 Jill (Host): And does that recharge you and then you're good to keep going?

00:14:56 Becky (Guest): I would say it partially recharges the batteries enough to get me through until the evening time till where I can do more of a full rest after my little one goes to sleep. I'm thankful that my husband is my husband is able to like take on a lot more of the burden with him as well, so that makes it easier.

00:15:17 Jill (Host): Yeah, OK. So now let's switch to motherhood. Do you feel like POTS has affected that?

00:15:25 Becky (Guest): Definitely. I'm not able to go for walks with him or take him to the park for long periods of time because I'm not physically able to stand and do the running. There are days I can't lift him up into the car seat now. He's 4 so he can climb up in the car himself now, but there were days like when he was much littler, I couldn't lift him up and put him in the car sear or take him back down because my heart rate would raise way too much. It's definitely impacted my life to the point where I've often thought that I'm not a good mom because of it. So that's gonna make me tear up. My husband assures me that I am and that I'm doing the best I can for him. So I keep trying to just remind myself of that, but I can understand how people can let their selves go down that trail of negativity because it peeks in every so often.

00:16:19 Jill (Host): Well, and I think a lot of us feel that about all kinds of different roles that we have. And so yeah, I can see where being a new mom that would be... it's a rough rough timing. So you're still pretty early on in your journey, you had mentioned, and you said you're still looking at options. So are you hopeful that there's still more things that you can do to get better?

00:16:48 Becky (Guest): I want to be hopeful, I can't say that I'm hopeful all the time. But yes, I I feel like there are definitely options out there that haven't been explored yet. I'm on my third beta blocker. I had an allergic reaction to the first one. The second one dropped my blood pressure way too much and now I'm on metoprolol. I tried to prep myself to be able to say that and I just don't do it very well.

00:17:14 Jill (Host): [Laughs]

00:17:15 Becky (Guest): Yes, so I'm on that, but I'm on the lowest dose – half a pill twice a day. So it's... it's very early. I've been on it like a week now. I am able to move more than 10 minutes at a time, but it's only like maybe 12. So it's not exactly where it should be but it's at least a couple percentage points higher than where I was. So I'm hoping that once we find the right dosage, as long as I don't have an allergic reaction or something crazy happen, that maybe this might be the right one.

00:17:48 Jill (Host): So can I ask you more about your work, because I have found over the years that the more volunteer work I do or the more work I do helping people who are struggling with whatever, the happier I am. And it's really good for me to get out of my own head and focus on other people’s issues, try to help them solve their problems, and it sounds like your work is very much about helping people in need and helping people with their issues. What does that do for you?

00:18:20 Becky (Guest): It definitely makes me feel like I have a purpose. This will give you a picture of why I feel like it's important. This educator was at her second day at a high school and she started talking about baggage and how, you know, our past promotes some sort of baggage. Sometimes that's good, sometimes it's bad. She had two male students open up to her about their family members being addicted to drugs. One of them talked about having to stop his uncle from stabbing his father, and one student talked about how his parents actually sold him for drugs.

00:19:02 Jill (Host): Oh my gosh.

00:19:04 Becky (Guest): And he had seen a person get shot during that time frame. In my head, I go, “What does pregnancy prevention education have to do with all this?” But when you start seeing the, like, the little traumas and how they impact our lives, and if you just have one person to help guide you out or away from that trauma, you can kind of see how the cycle can be stopped. And I think just hearing those stories, even if I'm not in the classroom myself, it helps me to understand that, like, no matter how many hours I put in recording a video or editing a, you know, publication or whatever I'm doing, there's a purpose behind it. There's a greater purpose behind it, and that makes me feel like I'm doing something to make this world a little bit etter.

00:19:55 Jill (Host): Today I think you mentioned that you are doing this podcast from your bed, so you've got all your technology, you've got your cool set up right there in your bed. Can you do your work from your bed if you need to?

00:20:07 Becky (Guest): I can, and I have all day. It just depends on the day. I mean, sometimes I'm in the community, I might be at a table at a community event all day. I might be helping lead a team leadership camp over the summer. Those days I can't, and so I have to push through in any way I can and take care of myself the best I can. That's when I carry salt pills with me and I make sure that I have all my hydration needs and my compression from ankle to chest. I will wear it across my abdomen as well, just to help increase blood flow. I do everything I can to make those days a little easier, but there are some days I don't have to do that, and if I'm having a rough day then sitting in the bed’s OK.

00:20:56 Jill (Host): Becky, my question to you is you've got a four year old, two puppies, and a full time job. How are you doing this?

00:21:03 Becky (Guest): I have no clue. [Laughs] I don't know. Without my husband, it probably wouldn't be happening. It's tough. Every day is like I just pushed myself until the end of the day and then I collapse. So, my little boy goes to bed around 7:00-7:30. We start the bedtime routine at 7;00, usually by 8:00 he's actually asleep, and then that's the time where I can just decompress and do nothing. So, have a few hours before I fall asleep.

00:21:37 Jill (Host): Yeah. So what kinds of things does your husband to do that helps you?

00:21:41 Becky (Guest): He will... I mean, he will do pretty much anything that I need done. If I'm having a really bad day, he will go drop my son off and pick him up from grandma’s. He will cook or pick up dinner. He will..h.e does all the laundry because that's downstairs. And so, I live in a split level house and so he will carry all the laundry down and carry it all back up. And then if I'm having a bad day, I don't even put it away. He just yeah, he just does whatever needs to be done. It's a lot, I'm sure for him, but he doesn't complain.

00:22:19 Jill (Host): Well, that's nice. That's very nice. We love kind caregivers. Thank you, kind caregivers. So, what do you think gives you the strength to deal with all this? Do you have anything that, you know, helps you cope? So I was.

00:22:33 Becky (Guest): So, I was actually thinking about that last night when I was talking to my stepmom. So my dad actually had nine back surgeries over the span of his life from various injuries from work related stuff, and so he was dealing with chronic pain all the time. And then he actually... he got shingles and he ended up with a rare disease called trigeminal neuralgia, and I'm not sure if you're familiar with that.

00:23:04 Jill (Host): I am just because I'm a nutritionist and a lot of people in our community have that and it makes it tough. But yeah, tell us, tell us about that.

00:23:14 Becky (Guest): Yeah, so my sister-in-law also, has it. My sister-in-law was diagnosed... it's been about nine years ago. But my dad was diagnosed after a bout of shingles. He got shingles on the face and in the eye and the ears, and that's what triggered it. They were lining the trigeminal nerve. So, the trigeminal nerve apparently runs across your face, I guess, and basically what would happen if the wind would blow, if the ceiling fan was on, he would get electric shocks down his face

00:23:42 Jill (Host): And for a lot of people, it's chewing.

00:23:44 Becky (Guest): Yeah, he couldn't lay on that side of his face at all. My sister-in-law actually has it on both sides of her face now. It used to only be the left, and now it's both, so she can't lay with her face touching a pillow at all. So she actually sits up to sleep most of the time.

00:24:03 Jill (Host): Wow.

00:24:04 Becky (Guest): Yeah, so it's it's dubbed the suicide disease because there is basically no treatment and it's so painful. So dad dealt with that. He dealt with back surgeries, and he ended up with cancer the last two years of his life and was in the hospital basically a full year. And so, I think about the strength that he had, and I'm like if he could deal with all that, I can deal with this. So I think between that and just looking at my little boy's little eyes, I have enough strength or courage, maybe, to just keep pushing.

00:24:47 Jill (Host): That's great. Is there anything that you know now about living with POTS that you wish you had known sooner?

00:24:44 Becky (Guest): I wish I knew what people were dealing with. So I actually work with a girl who has POTS. I didn't know she had POTS until after I was diagnosed, and she heard me talking about it and she was like, “Hey, I have it, too!” She was diagnosed as a teenager and barely made it through high school. I'm not sure how she does what she does now 'cause she stands in front of a classroom teaching students all day long and she runs a camp all summer long for foster youth, but she is on her feet constantly and it's basically nutritional and medicinal treatments that have gotten her through, but she said it took a really long time and I think that it would have been helpful to know, like, that people are suffering in some way that is not seen.

00:25:41 Jill (Host): Yeah. Do you feel like POTS has taught you any life lessons besides that?

00:25:47 Becky (Guest): I was always on the go, so I think it's taught me to slow down and maybe value the time I have with people and the smaller things like hanging out with my, you know, my little guy in the pool. Before I’d probably be like, oh, I gotta go outside in the heat, because I've never been an outside person, not in warm weather anyway, and I probably would have regretted or been like frustrated because I had to do that. Now I cherish those moments. Anytime I'm having a good day and I could spend a little extra time with somebody I love, I cherish every second of it.

00:26:29 Jill (Host): Oh, that's great. And this is kind of related, but kind of different, but are there any silver linings? Has anything positive come from your having POTS?

00:26:41 Becky (Guest): I don't know that anything is positive other than my outlook on little things. Like, I can't think of anything else that would be positive.

00:26:52 Jill (Host): So an outlook on little things actually sounds like a very big deal, though. It sounds like something that probably comes up often.

00:26:59 Becky (Guest): Yeah, it I think that a lot of times we take life for granted and we we move so quickly that we don't take the time to really see what joy we have in front of us, and I think that POTS forcing me to slow down has done that as well. You know, I think... I'm a Christian, I know not everybody listening to this podcast is probably a Christian, but I am, and I draw a lot from my faith. And there's a passage that says that God makes us lay down in green pastures, and it's the “makes us” piece that makes me realize, like, we're not willing to slow down. So, if POTS has made me do that, maybe it's a blessing, in one way or another, and I just don't know what the blessing is from.

00:27:49 Jill (Host): That's a nice way to look at it. Are you up for doing some speed round questions where you just say that first thing that comes to mind?

00:27:58 Becky (Guest): Yeah, I can try.

00:28:01 Jill (Host): What is your favorite way to get salt?

00:28:03 Becky (Guest): Probably really salty pretzels.

00:28:07 Jill (Host): What is the drink that you find the most hydrating?

00:28:11 Becky (Guest): I pretty much only drink water, but I add electrolytes to it, so everything is electrolyte infused.

00:28:19 Jill (Host): What is your favorite time of day and why?

00:28:23 Becky (Guest): Early evening, if I've been at home and able to rest is my favorite time of the day, because mornings are really, really hard for me, and late evenings are really, really hard for me. So it's like I have a burst of energy around 2:00-3:00 in the afternoon. So, that's usually a better time of the day for me, and mentally I'm more clear during that time frame as well.

00:28:47 Jill (Host): OK. Where is your favorite place to spend time and why?

00:28:52 Becky (Guest): I don't know. I've really only spend time at work and at home. So I guess I would be home 'cause my little guy’s here. I got my little boy, I've got my puppies. We have our own pool. We just moved here in July of last year so I got to use it a little bit last year, but I'm hoping to maybe build up a little muscle strength in my legs this summer and not actually have to go anywhere and being kind of in a safe space.

00:29:15 Jill (Host): I predict that if we ask you this question again in one year, you will say your swimming pool is your favorite place to spend time. [Laughs] OK, next question. How many doctors have you seen for POTS?

00:29:30 Becky (Guest): For POTS specifically - about 9.

00:29:35 Jill (Host): How many other POTS patients have you ever met face to face?

00:29:40 Becky (Guest): One, but I work with her every day, so it's great. I can bounce ideas off her and say “Do you think this is POTS related?”

00:29:47 Jill (Host): That's great. What is one word that describes what it's like living with a chronic illness?

00:29:53 Becky (Guest): Hard.

00:29:55 Jill (Host): What is some good advice anyone ever gave you about anything?

00:30:00 Becky (Guest): I think probably the best advice I've ever received in life came from my dad and it was just to love people where they are.

00:30:10 Jill (Host): Oh, very nice. What is something small or inexpensive that brings you comfort or joy?

00:30:19 Becky (Guest): My little puppy, the little tiny one, my Husky brings me comfort and joy in a much bigger package, but the little guy - he's 7 pounds and he loves to cuddle - and so he will snuggle up on my chest when I'm having a bad day and just cuddle up underneath the blanket with me. So, I find a lot of comfort in him.

00:30:42 Jill (Host): Oh, very nice. I think the dogs are winning, for this question. I think they get the most shout outs. Who is somebody that you admire?

00:30:53 Becky (Guest): So, there are several men in my life that I've admired over time. My dad and our ministry leader who taught us how to deal with the homeless population and really showed us what it was to love people where they are. His name was Papa Don. Both of them are no longer with us.

00:31:15 Jill (Host): What is something that you're proud of?

00:31:17 Becky (Guest): I guess I'm proud of being able to function at some level, even if it's not my optimal level. I'm proud of the fact that I haven't given up.

00:31:32 Jill (Host): What is the toughest thing about POTS?

00:31:37 Becky (Guest): It's not visible. So I go to church or I go somewhere where there's people who know that I have a chronic illness, but they don't really understand it and they're like, “Well, you look fine.” It's really frustrating because I can look fine, but my heart rate be 168 while I'm standing and internally being like in super amounts of pain.

00:32:01 Jill (Host): What is an activity that you can enjoy even when you're POTSie?

00:32:07 Becky (Guest): I have Animal Crossing on my Nintendo Switch right beside my bed. I play it regularly. It brings me joy because I can get in there and decorate houses and stuff it with different themes. So I can do that no matter what position I'm laying in, so....

00:32:25 Jill (Host): Very nice. Is there anything that helps you fall asleep?

00:32:29 Becky (Guest): Muscle relaxers and nerve medicine is literally it, so far. I haven't gone the route of sleep medication. Melatonin did not help, but I have medicine for other things, so if it works, my PCP is like let's not add something else at this time. I'm hoping that maybe once my heart rate starts to get a little bit more under control, sleep will come easier, but that could be just hope. [Laughs]

00:33:01 Jill (Host): Is there anything that reliably gives you energy when you need it?

00:33:06 Becky (Guest): Not that I can think of other than like just downing a bunch of salt. Sometimes that will give me enough energy to push through.

00:33:16 Jill (Host): What is a gift that you would have sent to every POTS patient on Earth if you had infinite funds?

00:33:23 Becky (Guest): A diagnosis. While we're waiting on the puppy, do you mind telling me how you make that like laying on your stomach comfortable? Because I can't do it. Like, I have to lay with my feet elevated. I can't lay on my stomach, it just, like, it makes me feel like I can't breathe.

00:33:40 Jill (Host): Oh, my husband says the same thing. All I know is I'm really really short and I wonder if that helps me because, like, when it comes to a lot of things, being short seems to help me like airplane, like car rides, airplane rides. But it's not that comfortable, it's just beats the alternative. [Laughs]

00:34:00 Becky (Guest): Gotcha gotcha.

00:34:02 Jill (Host): But since my dog stopped barking, can I ask you to finish some sentences?

00:34:09 Becky (Guest): Sure.

00:34:10 Jill (Host): I love it when....

00:34:12 Becky (Guest): Oh, that's tough. I love it when I have a good day.

00:34:17 Jill (Host): I hate it when....

00:34:20 Becky (Guest): I mean, the opposite - have a bad day. I hate to be laid up all day long and not being able to function.

00:34:29 Jill (Host): Have you ever had to sit or lie down in a weird place because of POTS, and if so, where was it?

00:34:35 Becky (Guest): Walmart, in the floor. Really gross. [Laughs]

00:34:40 Jill (Host): Which department of Walmart?

00:34:43 Becky (Guest): Uhm, actually it was right by the registers, so probably the place that has the most foot traffic.

00:34:51 Jill (Host): [Laughs] And last speed question. People might suspect your POTSie when....

00:34:59 Becky (Guest): When I'm drinking Propel while laying down with my feet up against the wall.

00:35:06 Jill (Host): That tracks. OK, I just have a couple more questions. What do you wish more people knew about POTS?

00:35:14 Becky (Guest): I think I wish that people understood the mental struggles that come along with the physical struggles. I think that the struggles that I go through mentally are probably even worse sometimes than the struggles that I have physically.

00:35:31 Jill (Host): Yeah. And last question, is there anything you'd like to say to your fellow POTS patients who may be out there listening right now?

00:35:41 Becky (Guest): I think that what I would say is, you know, I'm early on in my diagnosis and treatment and I'm getting through because of the POTS community, because of the POTS groups and that community. We kind of stick together. And if you allow other people to join your journey, it will make it easier. And I just, I feel like it's easier for me because of all the legwork that other people have done. So, thank you, but also let others into your life and try to invest in them as well.

00:36:18 Jill (Host): Very nice. Well Becky, thank you so much for sharing your story and your insights with us. We really appreciate it and I know we all hope that things just keep getting better and better for you going forward.

00:36:32 Becky (Guest): Yeah, for everybody, hopefully.

00:36:35 Jill (Host): Yeah, right on! Amen! And hey listeners, thank you for listening. Remember, you're not alone, and please join us again soon.

00:36:44 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) nonprofit 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.thepotscastcom. Thanks for listening. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]