Episode Transcript
Full Episode
Jill Brook: Hello fellow POTS patients and marvelous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries where we get to hear the tales of others in our community. Today we are speaking with Rachel, who is also horizontal, so thank you so much for joining us today, Rachel.
Rachel: Thank you for having me.
Jill Brook: Let's start out with the easy stuff. Where are you, where do you live, and what's your age?
Rachel: So, I'm 26. I live in upstate New York, I guess you can say. It's a very small town called Ransomville. It's like 1200 people here.
Jill Brook: Oh, okay. So tell us about your town. What is it known for, or what is it like?
Rachel: Well, it's like farm country, so, yeah. Farm, Farm, farm, Farm. That's all I can say.
Jill Brook: My idea of upstate New York is that it's very green and beautiful.
Rachel: Yeah. Like when you see those primitive, paintings and all that and you see the wide open fields, It's in rows of stuff. It's very much like that.
Jill Brook: Very nice. Okay, so what are the other basics we should know about Rachel? How would you describe yourself?
Rachel: All right, I'll start with the before. That's what most people have known me as. I was just very type A and I owned a bakery and I'd go to the local farmer's markets. And I was kinda like an exercise enthusiast, so I was never not moving.
Jill Brook: So you owned a bakery. What is that like? What kinds of stuff did you make?
Rachel: I made cakes, cookies, pies, tarts, scones, muffins, brittles, candies. Yeah, so much. Some breads. Little pastries Yeah, unbelievable.
Jill Brook: What was your favorite? Like did you have a specialty or did you have a one thing that was your favorite to make or that you were most proud of?
Rachel: I'm honestly proud of it all but my favorite thing was my cakes and my scones. I was the scone lady.
Jill Brook: So you sound like you were super active doing a ton. So what would your friends or family say are some personality traits of yours?
Rachel: Kind of just hardcore. Really goofy. Like a savant with music and art and food.
Jill Brook: That sounds amazing.
Rachel: Yeah. Just kinda tough, intimidatingly so.
Jill Brook: So brag to us. Tell us some things that you're good at, and I know it sounds like art and music, but specifically what are some things that you've been proud of or skills or traits.
Rachel: I guess artistically, decorating my house, my market stand was always just a lot of small details and , especially curated pieces to make a whole thing that was pleasing to look at. And I kind of treat my home the same way. So there's that, but also , painting, antique furniture and things like that, I'd find I'd repurpose it and then put it in my home. I'm actually really good at hair and nails, I did cosmetology at a point.
Jill Brook: Wait, can I interrupt? You're making me really curious now about your cakes, right? So what was your idea of a really fantastic cake that you would've made?
Rachel: So it would sound like they'd look like those, beautiful, smooth crazy looking Instagram type cakes. But I think for me, what made my cakes good was that the cakes stayed moist and I made everything from scratch, The frostings were rich and buttery and delicious, and the cakes stayed moist and the pairing of the two was , I don't know, it just...
Jill Brook: I think everybody listening is gonna be so hungry at this point. That sounds amazing.
Rachel: I made it, perfectly rustic is the only way I can describe this. I wanted it to feel like when you were eating the cake, it was just made by your friend or your family member, but had that little bit of baker's touch, you know what I mean?
Jill Brook: That sounds amazing.
Rachel: Thank you.
Jill Brook: More in the Get to Know You category. If you can sum it up in a minute or less, what's the most fun thing you've ever done in your life so far?
Rachel: Oh, most fun thing. I'm drawing a blank just because I haven't had so much fun. I've always been working but teaching my niece how to bake sugar cookies one time, I was teaching her how to make the dough, how to roll 'em out, and how happy she was to do it. That's a memorable thing for me.
Jill Brook: How old was she at the time?
Rachel: She was eight. Eight or nine? Yes.
Jill Brook: Very nice. Okay, so you did have a life before POTS, or at least before bad POTS it sounds like. So when did POTS strike you and what did your life look like at that time? What were you up to in that year leading up to when POTS arrived?
Rachel: So this was actually this January, this past January. At that time I was going to outdoor markets in the snow. Very busy. I was just working, but I was happy to be doing it. And then I got actually infected with COVID on New Years and then not even two weeks after was bedbound, housebound, and I've just been trying to gain my strength ever, since. So I've had POTS since eight months ago. Exactly. Today
Jill Brook: Wow. I'm so sorry to hear that. So was your COVID very severe?
Rachel: Not really. I was still lifting weights during it and going for my runs and just only remember three days of fatigue and I didn't have a cough or anything and I was still doing everything I was doing. So I would say about a week and a half after the POTS was full force and then has not let me go since.
Jill Brook: Oh man, are you laughing so that you don't cry?
Rachel: When I laugh like this, it's halfway nervous laughter, and then half, I have to laugh because yeah. I will be upset so it's just, you're right. Yeah.
Jill Brook: No, I get it. Okay, so what did you think was happening? Did you think it would just pass? Or at that point, did you know what POTS was or how did you get from that day when you woke up and it was hard to get up to knowing that you had POTS?
Rachel: I have felt all these physical sensations before. What was different though was I was noticing, it's only when I'm standing up and walking around, what is this? So I was like Google and yeah, it showed up POTS and I was like, What is that?
Jill Brook: You figured it out by Googling.
Rachel: yes. Presented it to my doctor. He's like, Yeah, but you have anxiety. I said, But this is not that. And so he put in the tilt table and failed 13 minutes in.
Jill Brook: Yeah. So once you had that POTS diagnosis, were they able to do very much for you to help you get better? And I should let people know so you're laying on your back with your legs up in the air right now and I guess first of all, how often do you have to be like that? Is this a once a month thing or are you like this all the time?
Rachel: Now it's only like two or three times a week, When I say two or three times a week, I mean two or three days out of the week, but within that day, a couple times a day. But I used to be like this every day for, I wanna say six months.
Jill Brook: So what helped you get as much improvement as you got?
Rachel: I honestly, I don't even know, I don't know if COVID does some sort of inflammation to your nervous system and maybe over time you're healing and it gets better. But I feel like it's honestly just been time and I don't know. That's all I got.
Jill Brook: Yeah, so this sounds like about the worst kind of illness you could have for being a busy baker who wants to go to farmer's markets. What happened to your business?
Rachel: It's gone. I had to take everything out of the kitchen I was renting while my grandparents actually had to help me move all the stuff. I couldn't even do it. So that was crazy. Yeah, so it's gone. And if someone calls me for an order and I'm having a good day and it's kind of short order, I'll accept it.
But yeah, I had to go and file for disability and social services. But the bright side of that is I can still do a couple baked goods every other day.
Jill Brook: Okay, good for you. A lot of patients report having a really tough time with disability and social services and all of that stuff. Do you have anything to share about your experience with?
Rachel: Well, I'm still working on the disability folks. I know you get denied. You know, I'm having to appeal it right now. Social services is a lot easier to work with. Given that you provide them your recent tax info and doctor's reports and stuff like that, it's not as many hoops and the process is a lot shorter.
So I'd recommend just knowing that disability usually denies people. I mean, I'm not minimizing POTS patients, but they deny people who are dying. Anyway, I'd recommend going to social services first to get some immediate help. Like you'll get, food stamps and couple bills paid and , so just go to them first, is my advice.
Jill Brook: Okay. That's a good tip. Yeah. So how functional are you these days? Can you drive, Can you grocery shop, what can you do or not do?
Rachel: I cannot drive further than a few miles like, after about three or five miles, I can't drive, I cannot grocery shop on my own. Last time I was shopping in a grocery store by myself, was in February. I was kind of in denial and I was like, I can do this. You know, not really grasping what you know. So yeah, I cannot grocery shop. I cannot drive. What I can do though is home stuff. I've finally found things to help me just inside my own home, like stools stools are major. Fans everywhere. Mostly just housebound and I can take small walks around my yard. I actually feel fortunate I can do all of what I'm saying because yeah.
Jill Brook: Because you couldn't there for a while?
Rachel: I could not, Nope.
Jill Brook: Yeah. So what helps you the most these days? What can people do to give you the best support? And are there any other tricks or tips or gadgets or drugs or anything that you find particularly helpful? What helps you get by?
Rachel: So what's helping me get by right now is all the salty things I try to find the healthier snacks. So. Really salty popcorn and olives and pickles. I'm a major broth drinker, so it's more of the food thing that's helping me and the small walks around my yard, I'm trying to condition myself to be just short bursts. Yeah, so just that compression was helping for a little while and I stopped wearing it cuz this summer is a scorcher. So that's all I can say. And yeah, hydration. So just, yeah,
Jill Brook: And then what helps you mentally? What helps you cope?
Rachel: Music, reading. I feel like people that have chronic illnesses you know, kind of sudden or when they've had a life previous, they kind of lose their sense of self. So, I kind of just try to do the things that remind me of who I was but working within the limitations I have now. So I'll read recipes and research, recipes and listen to music that I used to, you know, while I was baking or running or lifting my weights and , just so there's. Things to remind me.
Jill Brook: Yeah. Yeah, that's really smart. So what are your new favorite activities or hobbies that you can still do reliably?
Rachel: Hmm. So with the nails thing . I find, I mean, I can lay on my stomach and I have my UV lamps and gel polishes and things like that. So, I give myself a new pedicure every week and it's , you know, it's fun. So there's that. I do a lot of writing and sometimes drawing, but I feel like I gotta get some words out or something. I'm trying to incorporate lighter exercises with bands. Like I'm trying to do modified versions of stuff I used to do, but seated and with bands and whatever I can do laying down.
Jill Brook: Do you feel like there's very much support for the long COVID community? Because it seems like sometimes, at least on social media or whatnot, it seems like sometimes there's people who don't believe that long COVID is a thing, and then there's other groups that are there to support long COVID patients.
What has your experience been looking for support, help, answers, groups, anything like that?
Rachel: It's not been great. I feel like there's other people that might have it worse than me, but as far as people believing me, there's only been, my grandparents, certainly because they've seen me throughout the years. They know me more than anyone on this planet. So , just people who were very close to me before are my support right now.
I can talk to them throughout the day and they're getting me through. I'm on Reddit a lot and there's a heck of a lot of support there. Even amongst the POTS community, not COVID related. But, doctors are kind of , ah, I guess yeah, we are seeing this, but we don't know.
So they'll be like, We see it, but , we can't say yes cuz they gotta rely on , studies that have happened over years, you know what I mean? Yeah, so the support's not great.
Jill Brook: That sounds really tough.
Rachel: Yeah.
Jill Brook: Yeah. Do you know other people who have post COVID POTS like you?
Rachel: In person, No. I've only made friends with people on Reddit, which is so weird for me to even say.
Jill Brook: Right. Well, it's probably somewhat like the people listening to this now because we've never met, but we have so much in common probably. It's really weird, right?
Rachel: Yeah.
Jill Brook: Yeah. Is there anything that you know now about living with POTS that you wish you had known sooner?
Rachel: Do not push it. If you're in that flare up fatigued, can't move, there's no reason for you to be pushing this. It's a sign for you to stop.
Jill Brook: Has there been any silver lining at all?
Rachel: Kinda. I'm kinda reevaluating how I'm going to treat myself in the future. Like This is a major self care wake up thing. I thought I was doing it before. This is a whole new, insight to that. And It also made me like see who's really there for me. So relationship things.
Jill Brook: Yeah. That sounds really super mature.
Rachel: Well, thanks
Jill Brook: Yeah, and I resonate with that, that you kind of learn who's there for you. You learn all kinds of things that maybe you did not want to have to learn, but are maybe good to know. For example, things like limitations of the healthcare system or limitations of the social net or things that I guess really open your eyes?
Rachel: 100 percent. Yep, you're exactly right. Yes.
Jill Brook: Yeah, this is why they say ignorance is bliss.
Rachel: Yeah. And I used to say before, these ignorant people, , and then now I'm over here like, I was the ignorant person Ah, you're right.
Jill Brook: Oh, I'm glad you can laugh. Okay. Are you up for doing a speed round where we just ask you to say the first thing that comes to your mind?
Rachel: Yes.
Jill Brook: What is your favorite way to get salt?
Rachel: Chicken broth,
Jill Brook: What is the drink you find the most hydrating?
Rachel: Pedialyte.
Jill Brook: What's your favorite time of the day and why?
Rachel: This might be controversial, but I'd like the morning,
Jill Brook: How early are we talking?
Rachel: Well, it used to be 4:00 AM. Now it's 6:30
Jill Brook: You are a hardcore, All right. Oh, and why?
Rachel: Because I can have my only cup of tolerated coffee and it's cooler in the day.
Jill Brook: Where is your favorite place to spend time and why?
Rachel: Right now, probably my living room where I'm at right now on the floor, or the kitchen.
Jill Brook: Nice. How many doctors do you think you have seen for POTS?
Rachel: Only two.
Jill Brook: How many other POTS patients have you ever met face to face?
Rachel: Zero.
Jill Brook: What's one word that describes what it's like living with a chronic illness?
Rachel: Unpredictable.
Jill Brook: Who is someone that you admire?
Rachel: Probably my grandparents. Yeah.
Jill Brook: Do you wanna say why?
Rachel: Yes. They're the only constant I've ever known and they've been married for, like, 56 years. They're just simple and very community focused and, They take everything as it comes and they're very compassionate and yeah, they're just ride or die individuals and like, anyone who's got 'em in their life is very lucky.
Jill Brook: That's wonderful.
Rachel: yeah.
Jill Brook: What is something that you're proud of?
Rachel: My strength and resilience
Jill Brook: what is the toughest thing about having POTS?
Rachel: Hm. Just knowing that you have limitations. The limitations and constantly having to get a grip on a schedule, according to your POTS and not necessarily how you want to live. Just constantly having to rearrange and acclimate.
Jill Brook: What is the most interesting ingredient you've ever put into a scone or a cake?
Rachel: Mm. Scone maybe candy ginger, or bacon.
Cake. Nothing too crazy there. Cakes are nothing too crazy in them. I feel like scones though are, I'll go crazy there.
Jill Brook: What's the secret to making a cake moist? If it's a trade secret you wanna keep to yourself we understand.
Rachel: No, It's cool. I noticed buttermilk cakes and having all your ingredients room temperature before you start. Or when they come out, depending on how you're assembling or doing whatever. Using a simple syrup or I make this weird sugar milk and brush it on and I don't know. It could be a few things, but that's what I'm thinking.
Jill Brook: Have you ever had to sit or lie down in a weird place because of POTS, and if so, where was it?
Rachel: I'm gonna say like in the beginning of all this, when I was still at my Kitchen that I was renting for the bakery thing, it was in a church. So the bathrooms were upstairs where the pews and all that were. And I walked outta the bathroom and I was up there and I was like,, Oh my God.
So I was in the church, pews church was not in session obviously, and just, it was a weird moment.
Jill Brook: Can you finish this sentence? People might suspect I'm a POTSie when.
Rachel: I have to just stop and drop. Stop, drop. Not roll.
Jill Brook: Okay. I have just a couple more questions. Is there anything you'd want to say to your fellow POTS patients out there who might be listening?
Rachel: Hmm. I'm gonna say this just because a lot of us can feel super isolated and it's very cliche, but you're not alone. there's people who are just like you, staying in one place for hours of the day just trying to recoup and you know, I would be your friend. You got a friend in me. I'm only on this podcast, but, you're not alone. So, yeah.
Jill Brook: That's great. And last question, what do you wish more people knew about POTS or Long COVID?
Rachel: I wish people knew that , I might even speak for all chronic illness people. When we say something, just believe it at face value. You don't have to prod anymore. When we say something, that's for real. I cannot walk from this car to this, whatever.
Even if it seems like really, like are you serious? Yes, I'm serious. So just believe what people are saying. That little thing that might not seem a big deal to you is a matter of breaking someone else. Do you know what I mean? Like They're at a breaking point when they say something to you.
So just believe it. Just support them.
And like, Don't make them feel bad about it. Don't say, Oh, if you push hard enough, it's not like that. These people push in their own ways every day. Even if it's small, a shower and doing their hair and makeup and doing the dishes and you know, like all in one day for somebody like this is, it's kind of a big deal.
Jill Brook: That's great. Well, Rachel, thank you so much for sharing your story and your insights with us. I know that everybody listening is wishing you only the best going forward and hoping things get easier for you every week.
Rachel: Well, I appreciate that, Thank you.
Jill Brook: Yeah. And 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.
