Episode 32 – POTS Diaries with Sarah from MN

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.

00:28 Jill (Host): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook 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 Sarah who kindly volunteered to share her experiences. She has lived through some stuff and now she's working to make it mean something for others. And if you've been listening, you know that I love it when people do that. So I'm really excited to hear her story. Sarah, thank you so much for being here with us today.

1:00 Sarah (Guest): Absolutely, thank you for having me.

1:03 Jill (Host): So let's just start with some super duper basics about you so people can kind of get a feel for you, who you are. What is your age?

01:11 Sarah (Guest): I am 36.

01:13 Jill (Host): Where did you grow up and where do you live now?

01:16 Sarah (Guest): I am a little bit of an army brat. My dad was in the army so we transitioned. I was born in Minnesota. We moved to Massachusetts, Illinois and a few places in Minnesota, but right now I am in central Minnesota where I live with my husband and my three daughters and two dogs.

01:33 Jill (Host): Other than being an army brat, what were you like as a little kid?

01:38 Sarah (Guest): Very social. I could make friends very quickly and I think part of that is because I had to adapt really quick, but yeah, I was very social. I constantly got in trouble for talking too much. [Laughs]

01:50 Jill (Host): I want to make you brag about yourself for a second. So, what is either something you're really good at or like what's your best trait, if we force you to not be modest for a second?

2:01 Sarah (Guest): I would have to probably say creativity - maybe creativity with adaptability. I can try to modify different situations. I also try to find the silver lining in kind of the positive situation, even in the hardest of times, which is a defense mechanism but also kind of a helpful thing for other people. So, I think it's kind of a double-edged sword.

02:23 Jill (Host): Right on. And can you give us a snapshot of what your life was like kind of up until you started seeing any signs of chronic illness show up, and I know that can be tough 'cause sometimes it shows up like a sledgehammer, and sometimes it just kind of sneaks in in little things, but anything you can talk about in that, we'd love to hear about.

02:45 Sarah (Guest): Pre POTS diagnosis or pre symptoms, I should say, I was definitely a busy bee trying to fit in with what I find myself in all the different sports and friendships and activities, kind of along the teen years. In high school is when things kind of changed. And so up until that point it was a lot of hanging out with friends, I did a lot of swim team, a lot of dance, a lot of hanging out. Did some youth group stuff and just trying to try to find who I was in those teen years before everything happened.

03:29 Jill (Host): OK, so I feel like we're getting this little premonition of when everything happened. What was your first sign or what were your first few signs that something was not right?

03:42 Sarah (Guest): I had issues with passing out a few times in high school. The hard part is I had also been in a motor vehicle accident. I was a pedestrian and I was hit and so a lot of the stuff that came after that, they were like just saying it was because of the accident. Mind you, I had already passed out a couple times before this accident, but all that got brushed away because they were concerned of the accident. And then I started having some others, like, stress related issues where basically I was having non-epileptic seizures and it was just due to the stress. And before the seizure I would end up passing out but that pass out they would just describe as stress related and so again it got brushed under the rug. And then, fast forward, probably about two years, and I started beauty school and I was standing on my feet all day. The chemicals - breathing everything in all day. It was a recipe for disaster. I enjoyed thoroughly what I was doing, but I would go home and my feet would be super swollen by the end of the day if I made it through the whole day because there was many times where I would unfortunately pass out. And the school I went to is about an hour away from where I went to high school and some of the girls came, we all kind of came with, and that was a nice transitional period, but especially with the health stuff, but also I kind of wanted to branch out, but in the sense that they knew what I had dealt with in high school. They were able to say like, “Hey, you need to contact your parents,” and stuff like that. Fast forward, about three more months, I was - I became pregnant, and then everything just kind of, I guess that's when the sledgehammer hit. Everything kind of came down at that point. I was collapsing daily. It was a constant thing. My husband would constantly bring me into the hospital and say, “Hey, we need to get her checked out.” Actually, he was my fiancé at the time, but “We need to get her checked out and everything needs to, like we need to figure this out.” And then finally he’s like, “Someone needs to just turn over the third stone and think outside the box, like, this is ridiculous.” And it was very common where, if I was having some sort of panic attack or some sort of stressful that happened before him, they're like, “Oh no, she's just having it's just anxiety.” So then again, got brushed under the rug. And that was in 2003. Well, 2003 I started beauty school and then 2004 is when I became pregnant and started passing out daily. It wasn't until 2008 that I was diagnosed.

06:17 Jill (Host): Wow! And it sounds like in the meantime, you had a lot of it attributed to, Oh, you're just an anxious person?

06:29 Sarah (Guest): Yes, I firmly believe that once you carry any sort of mental health diagnosis, whether it's depression, anxiety, borderline personality, OCD, anything, doctors immediately brush you off and say, “Oh, you're just nervous. It's all in your head,” and then we don't get the care that we need because it's ignored. And that's a huge passion for me, of just educating the doctors when I get the opportunity of saying, “No, I understand this is how it looks, but if you dig a little deeper my stripes will come through and just you'll see that I'm a zebra,” 'cause in Med school doctors are taught when you hear hooves beat, think horses, not zebras, basically teaching them think inside the box, not outside. So yes, it may look like a common panic attack, but really there's much more going to it, and our struggle is so much deeper than they see, so we need a lot more care and a lot more attention. And it's not us just being needy, it's just we really absolutely need that care. But yeah, that mental illness - it definitely brushes things away and doctors don't pay attention to the same degree that they probably should.

07:40 Jill (Host): Now, did you have your husband support through this time? It sounds like, at least in the beginning he was there saying, “Hey, you gotta help her.” And did he get worn down with everyone telling you it was just anxiety or how did that go?

07:55 Sarah (Guest): Yeah. It, it was a journey. Our marriage has pretty much been a marriage of anything that is going to try and pull you apart will happen to us, but we have definitely overcome. We actually just celebrated our 17th anniversary in July, so we are still together and strong. But yeah, it's, he's been by my side. He has been - I call him my pillar, my rock. Like, he holds me up when I can't even go on, and it's definitely been a journey. It's true blessing because I know not everyone is fortunate with that, but he definitely is my best friend. He's - we joke that our tagline for each other is “PIC” 'cause we're each other's partner in crime. We’re like ride or die we're together.

08:37 Jill (Host): Oh, yay! Shout out to him. Thank you for being awesome. That's so good to hear. I guess during this time, how did it affect you not to have any answers or a diagnosis?

08:51 Sarah (Guest): The journey into getting diagnosed, whether it was with that, or I kind of almost want to include this chronic illness in general, I felt lost. I felt worthless. Sorry, I’m getting a little emotional. It's a journey I don't wish on anyone and because you are struggling to find yourself, your identity, and then you get this thrown at you and you have to overcome somehow by sheer will strength that you can persevere. And on so many days there was days I had my children go to daycare because I knew I couldn't take care of them. And eventually it got to the point where they had to go to daycare full time because Mom was stuck in the apartment 'cause she couldn't do anything. And taking care of toddlers is not something that mixes well with POTS, especially early on in diagnosis, in my opinion. At least it was in my case. And I kind of felt like I got my mom card taken away and so that was gut wrenching. I was also still trying to figure out who I was just in life because the schooling I had tried to do - I had mentioned earlier I was in beauty school - and then obviously being on my feet all day didn't work. Then I went to my next love, which is medicine, went to medical assisting school and got certified in that and that way I had the opportunity to sit at the desk on some days and then some days be on the floor or in lab or X-ray, and it was a great variety. It was awesome. But then in 2008 when everything had hit the fan, basically I lost yet another love. And so I was trying to figure out who I was without a job, not being able to take care of my kids, feeling like I couldn't get out of bed many days. It was lonely.

10:35 Jill (Host): I feel like you just said that so eloquently, and so, thank you for being able to say that so well. And I'm excited to get to the next part – the, you know, you overcoming part, but just before we get to that part first just so people have a complete picture, can you just share what - either now or at your worst - what were the worst symptoms you were dealing with?

11:04 Sarah (Guest): OK. So my worst was in 2008 when I was diagnosed. I lived basically at my brother-in-law's who's just a few minutes away from Mayo Clinic down in Rochester, Minnesota, and that's ultimately where I got diagnosed. I was wheelchair-bound at that time. I had no ability to stand. I was losing weight rapidly because I could barely eat, I couldn't breathe. And it was just heart racing, like you feel like you're running a marathon, but yet you're not physically leaving the wheelchair because your body is just - it's like an adrenaline rush where your tachycardia is so fast because my heart rate would be near the 200's at my worst point, and so it was definitely an exhausting feeling. I had visual issues where, mind you, I've struggled with vision since I was 15, but things were changing rapidly and they weren't sure why. They did ultimately end up finding a benign mass behind my left eye, but they said that didn't necessarily attribute to it because it's near the optic nerve, but it wasn't actually pushing on it. So they really didn't have an explanation, which now I found that visual issues can be a POTS thing too. But then a lot of the brain fog and confusion and not knowing how to put two and two together. Things were just kind of floating through space and I just didn't have any energy to get through it. And then I was basically diagnosed by what I call an angel and I hope it's OK to drop a name - I don't know if it is - but his name was Dr. La Chance. And the reason why it signifies something to me is he took a chance on me because he believed in me and didn't just see the anxiety. He saw past that. And then I was able to finally get the tilt table test, which is a blessing and a curse at the same time, 'cause anyone with POTS or anybody that's had that test knows that it is basically going to the ends of the Earth and back. It’s hell and it was necessary, though, because it was life changing. He took a chance and he listened and did the tests, ordered the tests that were needed, ruled out some other stuff, which I was grateful. And within that two weeks that I was down at Mayo, I went down there feeling like I was dying, mentally and physically, and came out of there with a little bit of hope that I was going to be OK, knowing what was going on.

13:40 Jill (Host): Yeah. So you used the word “life changing” - getting that diagnosis was life changing. Was it just that it gave you some hope or was there other ways that it changed your life, too?

13:52 Sarah (Guest): I think it was life changing in the sense of that it gave me hope to kind of go forward and look on, but it also gave me clarity as far as knowing what I was going through and gave me kind of a validation stamp of approval that I wasn't crazy, like every other doctor was saying. So it gave me that, but that it's also opened doors for a lot of opportunities to meet other people. I was able to educate my then nurse practitioner in family medicine who bravely actually said, “You're too complex for me, I need you to find internal medicine,” which was hard, but she stayed with me for a while and let me kind of teach her what I was learning through different organizations and different people that I met in different specialists. But it's definitely open doors as well. I mean, yes, there's hard days, but I think focusing on what we're gaining from it is huge too.

14:44 Jill (Host): Yeah. As soon as you had your diagnosis, did you get to start trying various treatments or what happened then? Did you immediately start seeing improvements or what was it like?

14:57 Sarah (Guest): There was not an immediate sign of improvement. It was definitely a gradual uphill battle and a lot of effort, mental and physical. I do think that there's definitely been a mental game of it, of trying to be stronger than the diagnosis and stronger than the symptoms, because if we're being honest with ourselves, they're debilitating. They can completely knock us down. And so, we have to have that mental strength to say, “OK, I can keep going.” And so there was a lot of that. There was a medication he started me on – fludrocortisone - that I was on right away. [Transcriber’s note: fludrocortisone is the generic name for Florinef.] He had started me on that and then I was on that, goodness, for quite some time and then up until two years ago was taken off of it because I had reached what I was told was stability and remission, which I'm now learning that it is short term because POTS is a roller coaster. So I am now back on it because it did work for me. But the biggest thing was salt intake and fluid intake, which if I'm being honest, I didn't listen to the importance of the fluid intake back then. I was an avid fan of coffee in the morning, Diet Coke during the day. And so there was not a lot of room for water. And I have now since learned that there is a huge importance of water. I'm a huge advocate for it. My girls are now teenagers and they hate when I say it, but anytime they give me a symptom I'm like, “And how much water have you had today?” because I know the big difference that's made for me in the last two years of how much water I'm drinking, but then also on the flip side of that is making sure that you're eating enough salt because the more water you're drinking, the more water you're flushing out of your system. So, you can't eat the same amount of salt with one glass of water as you would with a gallon of water a day. And that was a hard adjustment, and I think that may have been part of what's contributed to my relapse is I can't eat enough salt to keep up with the water I drink a day. So the fludrocortisone has helped a little bit with that of retaining it. But yeah, it's been a lot of journeys along the way. There definitely was not an overnight fix all. I don't know if anyone’s had that, but kudos if you have. [Laughs]

17:14 Jill (Host): I haven't heard that from anybody, but if you're out there... [Laughs] What is the best type of help or support that friends or family could give you at this point?

17:25 Sarah (Guest): I think everyone has a different season for when they need different types of help. I have gone to different therapies, and I say different because I've switched therapists, because I think each season depends of where I'm at. When I was first diagnosed, I was really negative. I was really down. I couldn't see any light at the end of the tunnel. I thought this was it, like, this is my life, and there's no way to make anything better. I thought I was wheelchair-bound the rest of my life, which there's so many inspirational people out there that are in their wheelchairs all the time and I just I couldn't even see that. I was like, “No, they're something else. There's some reason why they can be happy and I can't.” So, I had a pretty intense therapy regimen then, and I was on medications and everything like that to kind of help work through that part. But then there's also been a lot of just family understanding that if I cancel plans on you one day, don't take it personal because it could be literally 5 minutes before you're expecting me to show up, and I just finally got the strength to say, “Hey, I haven't been able to make it out of my bed all day.” And I have lost a lot of friendships over it. It's also affected work relationships, because people think I'm irresponsible, and it's not me being irresponsible, it's just it took that much effort to get to the phone to let you know, “hey, I can't make it, and this is why.” And it's not me crying wolf because that's a common thing too, or like, “Oh, you're just faking it. You want to get out of this,” and that's not it. So having the support of understanding and trust that I want to be there, but I physically can't. And then also on the days where it's I may have a little bit of physical energy, but maybe I need to do a little bit more self-care, so understanding that implementing that is just as important as me maybe going to a meeting, and so I have to take that time instead, whether it be take a longer shower or bath or just do something for me instead. There's definitely been a balance of that that I've needed. But I think definitely finding inspirational podcasts and music and just things that can kind of bring me up, especially on those harder days and kind of having that mental toolbox ready to go. So that way when things are hard, I don't have to sit there and try to find things, I know where they're at.

19:51 Jill (Host): So, I love that not only did you try to put together a mental toolbox for yourself, but you decided to make a tool that others might benefit from, and the whole reason that I found you is because online I came across Survive Your Struggle. And that is something that you created. Tell us about that.

20:14 Sarah (Guest): So, Survive Your Struggle is a purely passion project driven business or organization, what have you. I am blogging once a month to whoever is out there and able to be reached so that way they don't feel alone. And then I do YouTube videos twice a month to explain a little bit more of the tips and tricks that I talked about in the blog and want to go in a little bit more detail. I also do Facebook and Instagram posts weekly to kind of inspire, so there's Motivation Monday, Tuesday Thoughts, Winning Wednesday, Thankful Thursday, and Fantabulous Friday, 'cause I like to make up words. So, fantabulous is how it is, because I think we need that ounce of celebration to understand that we are more than our struggle. We are more than our diagnosis. We have the struggle that we're going through as a part of this, but it's not all of us, and so we don't want to let it defeat or define us and that we can get through and even enjoy the hard times. Just even actually having a relapse of a POTS issue last month where I was wheelchair-bound for three days again and on Holter monitor wires and everything like that and I would put on some music and have a little mini dance party in my wheelchair, and I even got out to get a walk. My wheelchair was as my walker and so I wanted to kind of showcase that, but I've also showcased too, me post-anxiety attack and the mental struggles that go with it because I want people to understand that I'm no better than anybody else. I've still - I'm still going through it and still try to learn, and we can all learn from each other, but I also think that we can build each other up. [Transcriber’s note: You can find Survive Your Struggle blog here: https://surviveyourstruggle.wordpress.com/ or on YouTube here: https://www.youtube.com/channel/UCe1tGqAaARYqaTAAzwKociA]

21:47 Jill (Host): I think that's so great. I was just pulling up a line from your blog that I liked. It says, “Do you struggle with depression and/or anxiety? Do you have or have you ever felt alone? Well, full disclosure, me too! You are not alone, warrior. You are stronger than you think. I will take you on my journey in hopes that 1) You don't feel so alone, and 2) So that you see that there is hope.” And I think that's great. It feels like you are putting it all out there to make sure that someone else doesn't feel as bad as you did, maybe?

22:24 Sarah (Guest): Yeah. So the whole thing that started is reflecting back on the journey. So, another kind of full disclosure is I struggle with health issues as well as my three daughters and actually one of them is being watched for POTS already as well. So it's definitely been a journey and a lot of medical specialists are like, “Oh my goodness, you need to write a book. You should have a show or something,” and the time was never right, and it never felt right the way that they were suggesting it. Also, knowing that my physical limits, especially with like POTS, varying day-to-day or any of the other chronic illnesses I battle, it had to be something that I could still achieve and not have it be overrun. And so it's on kind of terms that I can do, but it was definitely something that I've always wanted to bring hope to people and I don't ever want them to feel alone because that was the hardest part about anything that I've been through is feeling 1) that I don't matter, and 2) nobody understands me. But truth is, we really do understand each other. Different people that I have met with POTS - our symptoms can be vastly different, but we can still relate on a common ground of not being heard and feeling alone, and that's not anything that should be common ground. We should be able to be together and kind of feel that solidarity and the name “warrior” kind of came as a tagline. I didn't even understand that it was going to be what it is, but we were working out one day - my daughters and I - and all of a sudden I was like, “Great job, ladies. You're killing it,” and I was like goodness I just I feel like Superwoman and they're like, “No, you're a warrior.” I was like, “Ooh, I like that.” So that's where warrior came from is my daughters actually called me their warrior and it just kind of stuck because I feel like that's an empowering thing. Whether you're whatever you're going through – man, woman, like whatever - it's open to everybody and we get to just kind of feel empowered through our struggles and we are warriors because we go through a lot to put on the face that people make it. They think that we are OK because it kind of is an invisible illness. And so there's a lot of work on our end to do that.

24:39 Jill (Host): So, you just alluded to two things that I want to ask you about. The first was other issues besides POTS, and I know that in this podcast we always focus on the POTS, but I like to remind our audience, especially if they're not that familiar with POTS yet, that there's a lot of comorbidities with POTS and a lot of POTS patients have POTS as just one thing they're dealing with. And sometimes it can seem almost like too overwhelming to even just believe is your complete medical picture more complex than only POTS? But then on the flip side of that, my second question is, you just alluded to working out with your kids?

25:23 Sarah (Guest): OK, so first question – yes. I have a complex history. It is filled with a lot of the other issues and I think that's one of the hardest things to diagnose about POTS is there are a lot of comorbidities and so things that often get overlooked, whether it be like the GI issues, the breathing issues along with that. But, fully open, I have Ehlers Danlos as well. I have Type 3 and they're watching me for classic, which also involves the heart. So, that can kind of complicate things with POTS. And then I also have an immune deficiency and so I have primary and autoimmune. And so that's definitely complicated things as far as like how I'm feeling. But yes, I - four or five weeks ago - I was in a wheelchair for a few days and blessing of all of that, I think where I'm at in my life, and I hope this for everybody whatever issue is, is that they can kind of push through the pain a little bit on some days and whether it's walking around your couch or doing what you do, but finding some sort of movement that makes you feel good. I don't work out to be a certain shape or size. I don't think anybody should. I don't feel you should work out to justify what you ate. I find so many endorphins released when I workout, and some days it really is just walking around the couch and I have to give myself a lot of grace because sometimes I'm hard on myself about that. I love doing different strengthening with weight workouts. I've found some stuff on YouTube that I've been able to really dive in and kind of grow mental and physical strength on that. And then one of my just favorite let loose option is to just put on a song and dance or find some sort of like dance on YouTube. I have a - I do follow someone that she does different like HIIT [high intensity interval training] style training with dancing, and it doesn't even feel like you're working out. It feels like you're having a party until afterwards, then you feel it and then you have the recovery. But yeah, it's been something where it's a journey some days. I mean, I have my plan of what I'd like to do every week. Oftentimes it's I get maybe one good workout in, sometimes two, and then I have my other kind of recover days and that's OK with me.

27:37 Jill (Host): So, you sound like a very mentally strong person. What helps give you the strength to deal with all this or to cope?

27:46 Sarah (Guest): Every day is different. My biggest thing is “this too shall pass.” I've overcome 100% of my hardest days already and so if I can do that then I can do this now. And so it's a lot of self-coaching, I think, and a lot of cheerleading statements. Often times I have to remind myself to be in the moment because I kind of anxiously get ahead of myself and that is kind of a downward spiral. So I have to focus myself on being in the moment. I, kind of going back to the music and the podcast, that's definitely been something that helped inspires me and I also have kind of transitioned and trying to teach my daughters this now, too, 'cause they know how phones - when you wake up in the morning, not going on the phone right away has been crucial. And once you're able to set boundaries of, OK, I can go on my phone just for inspiration - so I'll go on to certain pages just to get like a certain couple quotes to the day where it's like, OK, my morning coffee. This is what I'm having, and this is kind of setting the mood for the day. Another huge thing for me has been the sense of gratefulness. So, at dinner every night we will go around and it'll vary between three gratefulness anywhere up to five, and the rule is nobody can repeat and it has to be something that happened that day. And it's just been a huge thing, So I take that part and then I take up, on my morning coffee I'll say, OK, I'm grateful this morning 'cause whether it was a hard night sleep that I overcome or something, and so every morning I start with a gratefulness and that's definitely changed my outlook because I see more positivity. It's definitely been an upward journey. One of my biggest credits of therapy was DBT therapy - it's dialectical behavioral therapy, and it really talks about like different forms of self-soothing and working through relationships and kind of gets to the core, I think, of mental strength and kind of building that toolbox for us, but I think gratefulness has been a huge thing too.

29:52 Jill (Host): It sounds like you've done a lot of work and that it has paid off enormously, yeah?

30:00 Sarah (Guest): Thank you, yeah. It's definitely been a journey and some days it's like, OK, I didn't get this done or I didn't get that done, and so it's I keep reminding myself like, OK, you didn't get all of that done, but did you get one thing done? And some days that's all it is and so it's giving myself that grace of like, OK, you need to be patient with yourself because you did this. But yeah, it's definitely been a journey of work, and I think that accredits to just a lot of people going through chronic health issues is we do our homework. We do our research 'cause we have to believe there's something better out there. This isn't everything for us. It's not our - it's not our demise.

30:37 Jill (Host): Very nicely said. With everything that has happened, would you say there are any silver linings?

30:45 Sarah (Guest): Absolutely. I think a silver lining - a really cool one, I think - is this because I hadn't heard of anything of as cool as the POTScast when I was diagnosed. There was very little resources, so I think a huge silver lining is getting the word out there and raising that awareness, so that way people aren't feeling alone. I definitely feel like it's given me a lot more empowerment to speak out, speak up, and not be silent anymore because I think a lot of times we're ashamed of what we're dealing with, and so that's why we're quiet and that creates that loneliness. So, I think the silver lining is I found my voice and I don't want anyone to feel alone again and so kind of the similar meaning of what you guys are doing with POTScast is to help – 1) help providers hear about it, but then 2) help patients not feel alone, I think, is huge.

31:33 Jill (Host): Yeah, I think shame is just about one of the worst emotions that there is, so, so that's beautiful. OK, so we have something here that we call the speed round and it's meant just to be a little bit of fun 'cause we know that a POTSie brain is not really getting adequate circulation or oxygen. So it's kind of cruel to ask you to give fast answers. So the speed round is something you can just give a quick answer - whatever is the first thing that comes to your mind. Sound OK?

32:01 Sarah (Guest): Yes. Deal.

32:02 Jill (Host): OK, perfect. What is your favorite way to get salt?

32:06 Sarah (Guest): Sea salt and vinegar chips with a side of pickles.

32:10 Jill (Host): What is the drink that you find the most hydrating?

32:14 Sarah (Guest): I just recently have done a month of this and I absolutely love it. It's called Liquid IV, but instead of mixing it with 16 ounces of water that they suggest, I mix it with 30. And I love the variety of flavors. But yeah, it's definitely helped my hydration, especially the overnight factor.

32:31 Jill (Host): How many doctors have you seen for POTS and related issues?

32:36 Sarah (Guest): Goodness. I want to say 10 to 15 - somewhere in there.

32:41 Jill (Host): What is your favorite time of day and why?

32:46 Sarah (Guest): I would have to say mornings, which is really odd for me because I never used to be a morning person, but I love waking up with my coffee and gratefulness and it's my one hour time alone with my husband before chaos hits.

33:01 Jill (Host): How many other POTS patients have you ever met face to face?

33:05 Sarah (Guest): Face to face, I don't know. I think maybe one or two, sadly, but I've met a lot online.

33:12 Jill (Host): What is one word that describes what it's like living with chronic illness?

33:18 Sarah (Guest): Oh, goodness, so many come to mind. Roller coaster, I think would be the first one that comes off the tongue. Something with a journey.

33:25 Jill (Host): What is something small that brings you comfort or joy?

33:30 Sarah (Guest): I am a sucker for the bubbles in sparkling water.

33:35 Jill (Host): Oh, that qualifies as small. What is something that you're proud of?

33:41 Sarah (Guest): I am proud to be where I am today compared to where I was back in 2003 when I started.

33:49 Jill (Host): What is a gift that you would have sent to every other pox patient out there if you had infinite funds?

33:56 Sarah (Guest): I would send a little sunshine package so it would have something yellow in there obviously, and there would be salt and a soft fuzzy blanket and a good pillow.

34:08 Jill (Host): Oh nice, I like that. OK, please finish this sentence: People might suspect I'm a POTSie when...

34:16 Sarah (Guest): I pass out when I get excited, 'cause my heart rate went too high. [Laughs]

34:23 Jill (Host): [Laughs] OK, we'll try to keep this low key then. Well, thank you. That completes the speed round. I just have a couple more questions for you. What do you wish more people knew about POTS?

34:36 Sarah (Guest): That it's not end all, be all. It's not the only thing out there, and yeah, it sucks in the journey, especially in the diagnosis, but if you're willing to put in the work, there's a lot more hopeful opportunities out there for you.

34:50 Jill (Host): And finally, why did you agree to let us share your story today?

34:56 Sarah (Guest): Because I don't want people to feel alone. I want them to understand and I think the more Diaries there are, the more people are able to relate to at least someone.

35:06 Jill (Host): That's so nice. And if people wanted to find Survive Your Struggle, what is the best place for them to find your blog and your other resources?

35:15 Sarah (Guest): My website for my blog is surviveyourstruggle.wordpress.com and you can find me on Instagram or Facebook at Survive Your Struggle, and YouTube I believe is also Survive Your Struggle, where you type in and there'll be a little lotus and the lotus symbolizes a lotus is blooming through mud. And so literally, they bloom every day through crud. And just like whatever chronic illness you're going through, you can bloom through it. So that's why the lotus is my symbol.

35:45 Jill (Host): Right on, that's awesome. Sarah, so thank you so much for sharing your story and your insights with us today. We really appreciate it. And hey, listeners, remember this is not medical advice. Consult your healthcare team about what's right for you. But thank you for tuning in. Remember that you're not alone, and please join us again soon.

36:08 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved. [Transcriber’s note: For a copy of this transcript or the transcript for any other episode of the POTScast, or if there is something we can do to make these transcripts easier to follow, please email volunteer@standinguptopots.org]