Episode 96: POTS Diaries with Jackie from VT

[00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast.

[00:00:30] Jill (Host): Hello fellow POTS patients and beautiful 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 know someone in the POTS community and hear their story. So today we are lucky to have Jackie with us. Jackie, thank you so much for joining us.

[00:00:49] Jackie (Guest): Thank you so much for having me, Jill. I'm so excited.

[00:00:53] Jill (Host): We are excited to hear your story, so thank you for volunteering. Can we start by hearing just some basics about you? Like where are you, how old are you? Who do you live with?

[00:01:04] Jackie (Guest): Sure. I'm 37. I live in Vermont with my husband and our two, uh, little kids, Olivia and Zoey, who are seven and four. I work at the Center on Disability and Community Inclusion at UVM. What I do there is I support kids with really complex learning profiles and bodies be like fully included at school.

[00:01:25] Jill (Host): Oh, that's so neat. Okay, there's so much I wanna ask you about already. Can you tell us a little more about your job? What kinds of things are you helping families with?

[00:01:33] Jackie (Guest): School teams will get a kid who might have autism and Down syndrome, for example, or a kid who is blind and wonder about how can I fully include this particular student at school. And so they'll call in my team and we come to school and we get to know this student and their school team, and we help the adults learn how to make sure that that student can do everything that their peers can do. So I travel for work, which is really fun. Yeah. So all around the state. And my colleagues, you would imagine if you get POTS and you work for a disability organization that the day I found out I had POTS, they Googled accommodations and just put them into place for me. I was like, Okay, everything that has to do with my meeting agenda is first. Great. You know? Let's do it.

[00:02:20] Jill (Host): That's great. Okay, Listeners, I'm jealous too. No, that's great.

[00:02:24] Jackie (Guest): Best case scenario.

[00:02:26] Jill (Host): Yeah, so Vermont. Okay. Where in Vermont are you from?

[00:02:29] Jackie (Guest): So I originally grew up in Connecticut, met my husband in Boston, taught adaptive skiing in Colorado for a year, and then we landed here about 12 years ago. And currently we're living in Jericho, so a little rural town. If you asked me before I met my husband, I would've been in like California. But here I am in rural Vermont and snow country. But it's awesome. I... we love it.

[00:02:52] Jill (Host): And you mentioned adaptive skiing. What's that?

[00:02:54] Jackie (Guest): I taught for a year kids with cerebral palsy how to sit ski. So they sit in sort of a cool sled, which is terrifying if you ever try it. And they have either skis on their arms or they sit sort of with their arms in the sled. And I teach them how to ski in this adaptive equipment, make sure sort of everyone gets to enjoy outside.

[00:03:15] Jill (Host): Oh, that is so neat. I have to admit, when I see that, it looks so cool. But the first thing that goes through my mind is how do they stop?

[00:03:21] Jackie (Guest): It depends if they can do it totally independently or with support. With support, it's like sort of a harness, which I've wiped out a zillion times doing, you know, like front big, giant wipe out or by yourself, sort of the same way you would with your legs, but just with your arms.

[00:03:36] Jill (Host): Okay. Oh, that's so neat. Wow. Let's hear more about you. Like how would your family or friends describe your personality?

[00:03:45] Jackie (Guest): So I just asked everybody at the dinner table, and keep in mind I have a four and a seven year old. Uh, but I got "loving, silly, determined, go-getter, loyal, and inclusive." Ah, that's nice. And I got "kissing" too, but I, I didn't know where to put that. So...

[00:04:02] Jill (Host): Okay. Excellent. If we were to force you to brag about yourself, what are some things that you're good at?

[00:04:09] Jackie (Guest): I have really good follow through. You know, like this whole POTS experience, for example. It's like, All right, I gotta get to the bottom of this and I gotta figure it out and I'm gonna do it. And so sort of follow through determination and like the desire to, like when you hear a no or a doctor that is unable to help, be like, Alright, I'm just gonna bypass you and keep marching. There's been some tears too. It's not all been pretty.

[00:04:35] Jill (Host): Oh man, what a great trait. I wish I had known to get that trait sooner. That is awesome. Okay, so you alluded to maybe like a life before POTS. Can you give us a snapshot of what your life looked like before any sign of POTS?

[00:04:50] Jackie (Guest): I have a big question mark if POTS has been here my whole life and I just didn't know it, and we'll get into that later, but, But I would say in the year leading up to POTS was also COVID, so I was working from home. My husband is a teacher as well, so we were sort of splitting four hour shifts on our computer. Trying to get done as much as we could, and our kids were not in daycare, they were here with us and just trying to manage being a parent of young, young children and working full time. I also was having really bad foot issues, so I was like hobbling around the the house, and just sort of trying to get through life during COVID. Prior to that though, it would be, you know, a normal mom, you know, working full time, chasing around some toddlers, you know, hectic. Life was hectic. Busy. And I never stopped, right? Like not for one second.

[00:05:40] Jill (Host): Yeah, sounds like it. What was your first sign that POTS was showing up for sure?

[00:05:46] Jackie (Guest): I had foot surgery September 3rd, 2020, and I have something called CYP450, which may a lot of POTSies might have. It's basically where I metabolize medicine really, really slowly. So medicine builds up in my system. It doesn't go well for me, so I tend to avoid medicine at all costs. So I had this foot surgery and I could not take the opioids. It was just too, too painful. My stomach was terrible trying to take them. So my parents brought me up, A CBD/THC gummy, and I had one a day for a week. And on the seventh day, I all the sudden had a full blown hyperventilation attack. I had never had one before. I am not someone who's ever had anxiety before, but my entire body felt like a big whoosh just came up my entire body stiff as a board, couldn't breathe. My husband called 911 and I was taken in an ambulance to the hospital, and at the time they had said, Well, I think you just, you know, I think you had a hyperventilation attack because your body's naive to THC. And then a few days later, everything like, and to this day, my biggest symptom is light sensitivity. I just, I hate lights. They do not work well for me. For about the next three months, everything was light sensitive and I just didn't understand why I couldn't look at my computer screen anymore without pain. And then like around December, I stood up from the couch and felt like I was gonna pass out. And then really bad digestive issues came and it sort of like worked its way into my life. It felt like, uh, whack-a-mole, you know, like every few weeks for the first year, something new came on until there was about 50 ish symptoms a day.

[00:07:28] Jill (Host): Ooooh.

[00:07:29] Jackie (Guest): Big long laundry list.

[00:07:31] Jill (Host): Do you attribute it to the combination of the surgery and then it sounds like just one tiny gummy bear a day for seven days, that's all it took?

[00:07:40] Jackie (Guest): That's all it took. I will say right before COVID, like, yeah, I think it was right before COVID, I was taking a walk in the woods. I had like at the time, an eight month old, like on my front pack, and then it was icy and I slipped and hit a rock and I had a terrible concussion the winter before where I was outta work for about a month. So that happened. I was pregnant the year before that. You know, I had this surgery. I never had, well I have had COVID now, but I hadn't had COVID back then. So I don't know. It could have been a lot of different things. But I will say, when I'm thinking about it, I often think the surgery must have done it.

[00:08:17] Jill (Host): Wow. What did you think was going on at the time? Because it sounds like if your first symptoms were just light sensitivity and this bad reaction to gummies, what? What did that make everybody think the problem was?

[00:08:31] Jackie (Guest): I was like, Okay, well no to self, I cannot handle THC and CBD so I will never be touching that again. I handed the bottle back, I was like, Goodbye bottle. Exit my home, never to be returned. And I thought my aunt and my mom, like migraines run in our family and light sensitivity. And so I just sort of assumed that I was having new migraines of some sort. Didn't really have the time in my life to follow up about that. So I just was like, It'll pass, it'll pass, and ignored it. And then eventually when the... the digestive stuff came on and the feeling like I was gonna pass out upon standing, I was like, Can't ignore that. I'm gonna go see a doctor. And that started the most frustrating journey of my life. But I, I did get lucky. I got the diagnosis within six months, thanks to a, a friend, but I had seen just resident after resident after resident who said, "You know, go home, drink a glass of wine, relax, you're stressed." You know those sorts of comments for a long time first.

[00:09:33] Jill (Host): Wow. Once you had that diagnosis, how much improvement were you able to get?

[00:09:40] Jackie (Guest): It's still quite variable. I have two good weeks where I'm quite functional and can get through my day with... not ease, like I do a lot to make sure I can get through my day, and then two weeks a month where much lower energy. My workout, everything has to sort of come down a few notches. Usually I'm laying down while my husband's making dinner. Just less helpful, less ...less able, and I'm really lucky because my work schedule allows me to create my schedule so I can sort of pack myself those two weeks where I'm really able to go to schools and then two weeks worth of meeting over Zoom or working from home or doing paperwork with just like maybe going out a few times a week. I'm really blessed in that way.

[00:10:26] Jill (Host): Is it a predictable two weeks on, two weeks off, like related to hormones, or does it just kind of blow up when it blows up?

[00:10:33] Jackie (Guest): Totally predictable. Though I don't have any evidence of exactly what's happening yet, I, that's still one of my mysteries that I, I'm guessing it's hormonal and it has to do with my cycle, and I would say about two days before my cycle's coming on until about a week afterwards, I feel really low. And then around day 11, day 12, my cycle it lifts for a few weeks and then it comes right back.

[00:10:54] Jill (Host): Wow. In a minute I'm excited to hear all of the different things you do to get through your day 'cause you said you do a lot, but for starters, can you give us kind of like a baseline? What does a bad day look like for you if you don't work at it to make it better?

[00:11:09] Jackie (Guest): I mean, at first it was crawling around the house and couldn't make it to the mailbox. My dad moved in with us. Now a bad day, I think one of your podcast speakers talked about breaking her day into quadrants, and so I really liked that and sort of thinking about my day in four pieces. So it's not a bad day, it's like part of a bad day or 45 minutes of, you know, not being great. So I would say there are still periods of every day where I am okay for a period of time. But, you know, I... I went for a half an hour walk today and I had a terrible migraine when it was done. Often the lights will be just really, really painful to my eye. And I have these terrible light sensitive glasses. They're pink and orange and I, I, you know, something out of the '70s when I wear them and I wear 'em proud and loud and they are great when I need 'em. I'm probably missing a bunch of things. You know, I would say sometimes, like not wanting to be alone can be a thing on a bad day, like being a little fearful of being alone. Just feeling like, you know, untrusting of my body.

[00:12:15] Jill (Host): Yeah, yeah. You know, you're the first person to mention that, but now that you say it, I so relate to that. And when COVID lockdown started, my husband started working from home, I did notice that all of a sudden it was like this great comfort that there's always somebody in the house just in case. Can you talk about some of the things you do throughout the day to make your day go better?

[00:12:40] Jackie (Guest): I start my day as slow as one can when you wake up with a toddler in your face saying like, "I need to go to the bathroom. Take me to the bathroom." So that whole idea of like laying in your bed and drinking water, I just like roll outta my bed and like, "Please be able to stand up. Please be able to stand up." But I will hydrate using drip drop. Everyone always talks about the other one.

[00:13:02] Jill (Host): Liquid IV?

[00:13:03] Jackie (Guest): Yes, Which tastes delicious, but I would flush every time I had one. So drip drop, I don't flush. It doesn't have niacin in it. Lots of drip drop, grape flavor is awesome, and some salt pills and just like sort of taking an hour for myself after the kids leave the house in the morning before I start work, that's an hour for me to move my body, for me to do breathing exercises where I slow my breath down for me to take my medicine. For me to my version of meditation isn't probably great. It's like five minutes of like sit here and try really hard to meditate, but just anything I can do to sort of like calm the body. And I wait to shower. I mean, some days I don't shower, but on the days that I do shower, I have a shower chair, which I feel like people who don't have POTS and women and have to shave their legs or feel like shaving their legs, they should just have them. It's amazing. Shower chairs are the best. I ...I can't imagine ever taking a shower again without a shower chair, There's lots of other things there, but those are good for a minute.

[00:14:07] Jill (Host): It is funny because until I entered the POTS community, I had never heard of so much love for a piece of furniture, much less a very utilitarian piece of furniture. But yeah, I hear a lot of patients just love their shower chairs.

[00:14:21] Jackie (Guest): Mm-hmm.

[00:14:21] Jill (Host): What other things work for you?

[00:14:23] Jackie (Guest): Well, I find that knowledge is power and I really like reading, and I just finished this book. I don't know if you've read it, Brave New Medicine?

[00:14:30] Jill (Host): No. Tell us about it. Brave New Medicine, A Doctor's Unconventional Path to Healing Her Autoimmune Disease. And she doesn't necessarily say she has dysautonomia, but she broke it down to I either have this or this, and I'm pretty sure I have this, but I'm not going to like give myself that diagnosis.

[00:14:47] Jackie (Guest): And she was a traditional doctor and then got sick and realized that sometimes just western medicine can't heal all of you. And so through her journey, she had to stop working for about 10 years and she goes on to sort of step by step, like baby step, get herself back into practice. Now she owns a practice and she gives the whole back of the book is all tips and tricks of things that she did to be able to get back to work again in a... in a more alternative setting.

[00:15:19] Jill (Host): Excellent. Wow. So 10 years. Can you tell us again the name of the book and the author?

[00:15:24] Jackie (Guest): Brave New Medicine by Cynthia Lee.

[00:15:28] Jill (Host): Perfect.

[00:15:28] Jackie (Guest): Reading helps. I have neuro lenses, which are really... they're expensive. They're not, they're not cheap. I wish they were cheaper and more mainstream, but they really help with my migraines and light sensitivity. It just makes it so that my eyes can focus better and I'm finding less migraines while I'm wearing them by like a significant amount.

[00:15:49] Jill (Host): So I've never heard of that. They're called neuro lenses? What's special about them?

[00:15:53] Jackie (Guest): So it's this whole new field of neuro-ophthalmology that is coming up and the neuro lens is made out of prisms. They basically look at your, and I might butcher this, this is something everyone should Google later and not take my word for, but they basically help your eyes work better. So if like one of your eyes, like, slightly leans to the left or something, it just like pulls everything in and supports your eyes. And the, the very first day I was like, Am I very tall? You know, like I felt like I was in one of those fun houses. And then by day two I was like, I'm never, I'm never taking these off ever again. It's official, like, we're never breaking up. They, they've been pretty wonderful.

[00:16:33] Jill (Host): Those help prevent migraines?

[00:16:35] Jackie (Guest): I think they help if you have migraines or for me, I work in front of a screen a lot, so I'm constantly like leaning forward and I have neck pain, so they just help overall. Like my neck pain is down, my light sensitivity is down, my migraines are down, and they're not gone, but they're definitely better.

[00:16:53] Jill (Host): Cool tip. All right, what else you got?

[00:16:55] Jackie (Guest): I did the DNRS program, the Dynamic Neural Retraining system, and I will admit it was a little brutal. It was like 13 hours of, of sort of lecture style learning that it's basically a program that challenges your mindset to be more positive and really this idea that your thinking has a lot of power to it. And so if not like you're faking your way through a chronic illness, but just try not to focus so much on it. And some of the things from that program really are carrying me through a lot of this.

[00:17:28] Jill (Host): Do you mind talking more about that? Like what was the process like and how long did it take you, and what kinds of changes did you notice in yourself?

[00:17:38] Jackie (Guest): I can be perseverative in nature, right? Like there's those people who are specialists and know a lot about a little, and then there's people who are generalists to know a little about a lot. I'm definitely a specialist, like I hone into my favorite interests and really get stuck there. And so this idea that I'm gonna like fix myself was the first year of POTS, right? Like, I'm gonna fix this. No one can stop me. Here we go. And like, I'm going to, you know, constantly check my Apple Watch and I'm gonna know exactly what my heart rate is at all times. So this idea of like, let it go, like it's okay to check in. Stopping yourself from really thinking about your symptoms. So for example, I have some PVCs and I have some atopic beats, and those can be really jarring and scary when they happen and really take you by surprise. And I'll like get low, like, okay, what's coming my way? Like, what's about to happen? And when that happens, you know, like you, you can get really stuck there like going down the Google Dr. Google Land and be like, All right, what does this mean and how is this gonna affect me? And let me go into the POTS Facebook group and just being like, Okay, this happened. Let's move on. Or I'm gonna only get a check my watch once a day in the evening and just see what it tells me instead of seven times a day. That sort of thing. And then it really helps you focus on meditation on positive memories that you've had from your past, which can sort of be mood boosters and then memories you can create in your future. So yeah, maybe today I'm not going to go for a marathon run, but you know, maybe I can in five years from now, and what would that look like and feel like and smell like, and just visualizations.

[00:19:15] Jill (Host): Neat. Just for people who are curious, you're talking about the dynamic neural retraining system and people use that a lot and my understanding is for, for POTS and mast cell activation syndrome also, is it fairly expensive? Do you mind sharing what the cost is just 'cause I know people are always asking about that.

[00:19:33] Jackie (Guest): I think it was around $300 I wanna say. I went to go see a chiropractic neurologist and I went to brain camp for a week as well, and I carry nuggets from both of those experiences. But going away was very expensive versus the dynamic neural retraining system had very similar ideas between those two places, and it was much more affordable.

[00:19:59] Jill (Host): Okay, great tip. Got any other things for us to share?

[00:20:03] Jackie (Guest): I downloaded the blue map on my phone, which is cognitive behavioral therapy. Sometimes if I do get into spirals with POTS where I'm feeling quite afraid of a new symptom that just came on, I'm playing whack-a-mole and I'm losing and I'm feeling stuck, and I will listen to one of those, like five to 10 minute little, uh, CBT strategies, and it just can like pull me out of whatever is bothering me. Sort of like therapy on the fly, I guess.

[00:20:31] Jill (Host): That's excellent. Can you say the name of that one again?

[00:20:34] Jackie (Guest): Bloom.

[00:20:35] Jill (Host): B-L-O-O-M?

[00:20:36] Jackie (Guest): Yeah.

[00:20:36] Jill (Host): And it's an app?

[00:20:37] Jackie (Guest): Yep. One of them. So this next one, this is a ask your doctor about it thing. So I went to Vermont, doesn't know about POTS. That's just not a thing here in Vermont. Once I was told that I could cure my POTS by running a marathon, so you know, I needed to go somewhere. So I ended up going to the Mayo Clinic in Arizona for my diagnosis, which I ended up getting four different diagnoses while I was there, actually. But the best tip that I got while I was there that I wanna share because I feel like this is not a thing that people know about, but maybe you do, Jill, is Airborne. So I'm just gonna show you what it looks like. So just these Airborne effervescent tablets. So I went to go see a neuro space doctor while I was there. It turns out that I hyperventilate because my body doesn't hold on to enough carbon dioxide.

[00:21:28] Jill (Host): Okay.

[00:21:28] Jackie (Guest): And so I've been having these hyperventilation attacks, not because there's anything that's stressing me out or in my environment that's bothering me, but because I'm not breathing well or correctly. So I've had to do a lot of work around breath work and learning to breathe properly again. And while I've been doing that, Airborne helps me. So you know how many POTS patients say, feeling like I can't get enough breath is what really bothers them.

[00:21:55] Jill (Host): Mm-hmm.

[00:21:56] Jackie (Guest): So this gives you the breath back. It gives you carbon dioxide back. Basically, you put them on your tongue and you bite 'em a bunch of times and you breathe over the tablet. And then within seconds of finishing the tablet, my feeling of air hunger goes away.

[00:22:12] Jill (Host): This tablet, so it's almost like a little piece of candy or something, or can, can you describe it?

[00:22:17] Jackie (Guest): It's absolutely foul and, and like, the only thing I can stomach is this very berry flavor. I thought I would like the grape, I was very wrong. But you basically break it in half. You stick it on your tongue, you bite it like five times, and then you breathe through your mouth over these tablets until no more of it goes down your throat, 'cause if you put it in it, like, uh, water, which is what you're supposed to do, it like creates a fizzy drink. So you're basically getting all that fizz on your tongue and going down the back of your throat. So it's really gross.

[00:22:48] Jill (Host): Okay, so I just wanna make sure we understand. So Airborne is a tablet that you're supposed to put in a drink and it's supposed to make your drink fizzy and give it vitamin C and give it some flavor. And instead you bite it, let it sit on your tongue. You inhale and that helps.

[00:23:05] Jackie (Guest): Makes it go away..

[00:23:06] Jill (Host): Okay, next question. You said you saw a neuro space doctor. What the heck?

[00:23:11] Jackie (Guest): When I walked into his office and I saw pictures of like people flying planes and astronauts, I was like, Where am I? And like how did, And it was like these fancy glass doors that was like sort of in its own entity at the Mayo Clinic. They sent me to him because of me saying like, I often feel like I can't breathe and I'm having hyperventilation attacks like a few times a week and they're terrifying. So I was needing medicine at the time that I would take as like an emergency med whenever I had one. And I didn't wanna be dependent on medicine to stop these hyperventilation attacks. And when you're driving a car down the highway and you've got two toddlers in the back, there is nothing more terrifying than having a hyperventilation attack. Anyways, I landed in his office and he did a bunch of tests and, but they were all around carbon dioxide. I asked him, 'cause I had been given an asthma diagnosis throughout these last two years, and he was like, you probably don't have asthma it's probably this. And, and then he proved it and he said, "If these Airborne tablets help you, like, does your inhaler help you?" And I'm like, "Not, Not really. No. I don't feel like I can breathe after I take my inhaler." And he's like, "Well then let's try this." And yeah, it's like night and day. So like what I've been told a zillion times by the nurses at Mayo Clinic is like, I could take an entire bottle of these Airbornes and it like will not hurt you. It's just lots of vitamin C. So it might be worth people out there asking their doctor about it. If you can stomach the disgustingness of swallowing this, you know you'll get a good 20, 30 minutes without that sensation.

[00:24:43] Jill (Host): That's so fascinating because we are definitely hearing more POTS experts talk about POTS having a respiratory angle with this carbon dioxide and breathing, and so it sounds like you found somebody who maybe is ahead of the curve.

[00:24:59] Jackie (Guest): Yeah. Hypo hypocapnia, I think it's called. The POTS group in England, like POTS UK, talks about it on their website, about how many people have breathing disorders with POTS and how retraining your breath is so, so important. And I'm not practicing what I preach.

[00:25:17] Jill (Host): And I just have to give a quick plug for Standing Up to POTS who has just given a grant to Dr. Satish Raj to study this also. Interesting. Fascinating. Okay. Did you have any other tips to share?

[00:25:29] Jackie (Guest): It's like, not my time of day to have good brain thinking, so I was like, All right, I gotta write them down. I think the cranial sacral work was huge for me, and I just have like this, you know, I think it was $20 or something, and I lay on it for like five minutes a day, and it really helps.

[00:25:48] Jill (Host): So kind of like all, Is it like a pillow or it's...

[00:25:51] Jackie (Guest): No, it's like almost like two hard balls that are sort of like joined together and it's called a cranial sacral, I think is the name of it. If you looked on it at Amazon. And I just put it right back here where my cranial sacral nerves are and lay on it.

[00:26:06] Jill (Host): So at the biggest of your skull is what you're pointing to? I think.

[00:26:08] Jackie (Guest): Yes. Thank you. I'm forgetting that people can't see me right now. And it just helps release that tension in in my head, which helps release that light sensitivity that I am experiencing. And the last thing, just for people who are having trouble sleeping, I watched all the YouTube videos of Dr. Sanjay Gupta and he has these great episodes called Sleeping with the Enemy. And by following his advice, I went from not sleeping at all to sleeping very well at night.

[00:26:38] Jill (Host): Wonderful.

[00:26:40] Jackie (Guest): That's it. That's my list. Very helpful.

[00:26:42] Jill (Host): Well, thank you. Well, and so as you were, as you were telling me about all of those things, I had wondered if that was a little bit of your work expertise kicking in. Like it's your job, right? To look at people who have certain challenges and figure out how they can live a normal life or. Do you think that your work expertise changes how you look at your own POTS?

[00:27:01] Jackie (Guest): You know, most of the time, yes. I think that, you know, adapting our environment to make sure that everybody can be included is really important to me. And so like getting a shower chair was no big deal. So on my team we have a PT, OTs, and speech and language pathologists and like having them come to my house and, you know, support my different environments was like I welcomed them in to, to be supportive. The one thing that for whatever reason took a while to adjust to is I have a walker with a seat and I use it for long lines or like I took my kids to the zoo a few months ago. I never would have made it through the zoo without being able to sit and it was like double duty. I was able to use it for walking, which I don't really need it for the walking part, but for the sitting part I did. And my kids would ride on it like it was a stroller as we were going through the zoo or long ice cream lines in the summer, like if we're going out for ice cream, I cannot wait in that line without feeling pretty symptomatic. And my husband is, you know, he's been around me for a long time and he is like, "Practice what you preach. Take that thing out, use it." I'm like, "I don't need it, you know?" And he's like, "Yes, you do." So, so that, that one for me has taken a little adjusting, but I think I've gotten over it.

[00:28:22] Jill (Host): Can I take you back to something you were talking about towards the beginning, which was your genetic variant that makes you perhaps process drugs more slowly? I'm guessing there's a lot of people out there in a similar situation or who have wondered if they have that or who have thought about getting tested. Do you mind just sharing how you found out that you had that variant and what test can you get? Did your insurance pay for it? What did you learn?

[00:28:48] Jackie (Guest): Yeah, so I'll try to keep this brief, but basically my junior year of high school, I started taking medicine for the first time, and right along that time I started to feel really sick and I got through my days, but I would have cyclical vomiting and really bad belly pain. I would land myself in the hospital every once in a while from just not being able to stop throwing up. And I was still like, I managed to graduate high school. I went on to college. I studied dance, at the time I was gonna be a dancer and I just continued to get really sick, and my parents were like, "You're far too young to be this sick. We're gonna take you to the Mayo Clinic." You know, it was nine, nine years later. So I went to the Mayo Clinic, to their GI department cause everyone always thought it was a GI issue. And I was given more and more meds along the way, uh, which made me sicker and sicker. And at the Mayo Clinic we learned that I had this. It was very, at the time it was brand new. So this is 12 years ago now. These tests had just come out and, and not too many people had known about it. Now, the Mayo Clinic developed a test called One Om, and it will come right to your house. You just do a little cheek swab and send it back in. It's, it is a few hundred dollars. My mom's insurance company, I believe, paid for it. Mine did not. So I think it depends on who orders it and what your insurance is. And it was invaluable, you know, it comes back, it tells you all of your abnormalities. It tells you where your really slow metabolizer and where you might be in the middle, where you might be really fast, and then it gives you a drug list of drugs that are okay for you to take no problem, and drugs that are gonna cause symptoms.

[00:30:24] Jill (Host): Excellent. So, the name of that was OneOme. Can you spell that?

[00:30:27] Jackie (Guest): Yeah. O-N-E-O-M-E. [Transcriber’s note: you can learn more about OneOme at their website: https://oneome.com/]

[00:30:30] Jill (Host): This is great information because I know like for some of us, we've had so many bad experiences with various drugs over the years and we don't know if it's, you know, mast cell activation syndrome or what it is, but if there's a way to just avoid future bad experiences.

[00:30:47] Jackie (Guest): You know, there's these people called pharmacogeneticists, and they study the way your body metabolizes medicine, and I was speaking to one recently, there's none in Vermont, and so I had to go on a treasure hunt to find one. He said, "You know, I can predict based on your genes, how you're going to do on a medicine, so just send me an email before you take a medicine and I'll tell you if it's gonna go well for you or not." And I was like, Whoa. Mind blown.

[00:31:14] Jill (Host): Whoa. Where is this man? We must, Okay. Alright. I know what you're thinking, listeners. You're thinking get this man on the POTScast. I will try to find one. Pharmacogeneticist, did not know that was a thing.

[00:31:25] Jackie (Guest): They're rare. I think I've covered most of my diagnoses. The only one I didn't say yet is I just found out recently I have pelvic congestion syndrome, which can be related to or a cause, a potential cause of POTS and hopefully I said that correctly. I don't wanna give anyone bad information, but I am scheduled for a surgery hopefully to repair it and help my POTS symptoms next month.

[00:31:50] Jill (Host): Is this when you have some blood vessels in your pelvic area where maybe there's too much pressure somewhere and so you're not getting good circulation?

[00:31:59] Jackie (Guest): Yes. So I guess it's, you're more apt to have it if you've had more than two babies. So you've been pregnant a few times. If you have a retroverted uterus, which I have and basically after pregnancy your blood vessels expand and blood starts pooling. So they were able to see on a CT scan that I have a lot of blood pooling in my abdomen region and that some of those vessels that make blood pump up are actually floppy and loose and my blood is... they actually were able to see it going back down. So not a good thing. So I'm hoping that repairing that will help my POTS symptoms, but one thing is that like there's no guarantee. So it's a little tricky going into a, a surgery that you're not sure is gonna help or not.

[00:32:47] Jill (Host): Oh my gosh. Well, we just send you all the best wishes in the world for that. And I know that on Netflix there is a series called something like Without a Scalpel, and they have an episode about this, which is absolutely fascinating. They can show on a camera all of your blood vessels, and as they're kind of snaking in - I don't know what the medical term is - their equipment in a camera and they interview people who have this and who feel much better afterwards. And I hope you'll be one of those success stories.

[00:33:21] Jackie (Guest): Me too. It's episode three. I shouldn't have watched it though. It is fascinating. But I was like, [makes retching noise] whole time was watching.

[00:33:30] Jill (Host): [laughs]

[00:33:31] Jackie (Guest): But yeah, it's, it's really interest.

[00:33:33] Jill (Host): That's amazing.

[00:33:35] Jackie (Guest): I was just thinking about the CHOP protocol and I was thinking about how hard it was to start that, and I forgot to say this one time, I don't know how many of your listeners like Schitt's Creek, the show, but there was nothing better for me than doing something really hard that felt almost impossible while watching something that made me laugh. So that was my way of getting through those first three months of that protocol was just watching funny tv.

[00:34:01] Jill (Host): Oh, good for you. Good for you. Oh, I can hear how hard you have worked to make a comeback, and it sounds like maybe after your surgery you'll expect to hopefully maybe be even better. Are you up for doing a few of our speed round questions?

[00:34:16] Jackie (Guest): Yeah.

[00:34:16] Jill (Host): Okay, perfect. What is your favorite way to get hydrated?

[00:34:20] Jackie (Guest): I would say Drip Drop..

[00:34:22] Jill (Host): What's your favorite way to get salt?

[00:34:24] Jackie (Guest): Pickles and tempeh with lots of salt on dipped in marinara sauce.

[00:34:29] Jill (Host): What is your favorite time of the day and why?

[00:34:32] Jackie (Guest): Probably like 10:00 AM or 11:00 AM where I'm hydrated and feeling Okay.

[00:34:38] Jill (Host): Where is your favorite place to spend time?

[00:34:42] Jackie (Guest): In nature.

[00:34:43] Jill (Host): What's one word that describes what it's like living with a chronic illness?

[00:34:48] Jackie (Guest): Variable.

[00:34:49] Jill (Host): What is some good advice anyone ever gave you about anything?

[00:34:53] Jackie (Guest): This is really random, but I can do anything for 10 seconds just like that plays in my brain often. You could do this, you could do this for 10 seconds.

[00:35:02] Jill (Host): What is something small that brings you comfort or joy?

[00:35:05] Jackie (Guest): Hugs from my family. You know, like little kid hugs are the best.

[00:35:09] Jill (Host): Aww. Who is someone you admire and why?

[00:35:12] Jackie (Guest): I admire someone named Joel Hopkins, who is a retired doctor who spent two hours with me on FaceTime because I'm friends with his son. Um, and he just was like, I'm gonna figure this out for you from afar. He has been with me every step of the way. He's just, he's amazing. And he calls me all the time and he checks in and he's, you know, a retired MD from Massachusetts that really cares about people. So one two-hour conversation and he's like, "You have something called POTS."

[00:35:43] Jill (Host): Oh, how great. What is something that you're proud of?

[00:35:48] Jackie (Guest): I'm proud of the fact that I've adjusted to this new way of being, and that took a lot of time and energy.

[00:35:56] Jill (Host): I think that's kind of good to hear, right? Because you're so bubbly and you're so upbeat and positive, and I'm sure people wonder, is that just her or is that something that took some doing.

[00:36:08] Jackie (Guest): It takes some doing and then something happens, right? Like you, you, you're doing well, you're like going along and then you get COVID and you can't move for a while with that. And it's like you start over. Plus like, then you get better, faster, you know? So like the ability to, you know, I was on like 21 Day Fix or something like that, on, on BeachBody, and I was on day 19 of the 21 and then, and now I can't even live the two pound weight again. All right, here we go. Let's start over. And it's okay. [Transcriber’s note: 21 Day Fix is an exercise program on BeachBody, www.beachbody.com] So I think most days I, I can handle it with humor and, and some days I just need to let out a little cry. Just depends on the day.

[00:36:48] Jill (Host): That's great. If you were Oprah and you could give a gift to every POTS patient on Earth, what would it be?

[00:36:57] Jackie (Guest): A good doctor, can I give everyone a good Doctor?

[00:37:02] Jill (Host): [Laughs] We'll take that. That sounds good. What is something that you're grateful for?

[00:37:06] Jackie (Guest): I'm grateful in this experience for learning to ask for help. I'm not someone who ever, ever felt comfortable asking for help, and I've learned to like, embrace and accept the village that is surrounding me.

[00:37:20] Jill (Host): Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was it?

[00:37:27] Jackie (Guest): I don't know if it was in public, but I spent a lot of time working in the beginning, at least from bed, and I would just sort of turn my video off and run IEP meetings from a bed.

[00:37:37] Jill (Host): So, I just have a couple more questions. What do you wish more people knew about POTS?

[00:37:44] Jackie (Guest): How much of the body it affects. I feel like when you first Google it, you're like, Oh, it's uh, it has to do with your heart and you don't realize how global it is. I've definitely had a lot of doctors being like, "Those symptoms aren't connected."

[00:37:57] Jill (Host): Yeah. Last question: Why did you agree to let us share your story today?

[00:38:03] Jackie (Guest): Well, your podcast has helped me so much. I find when I'm looking for information or I have questions or I just wanna feel connected to this community, um, or I'm having a bad day where all I can do is lay down for a long period of time, I just find myself listening. And there's a lot of great stories that have been told, and I don't know, I guess I just finally wanted to share and I was in my head, I had it that I should wait until I'm better, you know, like wait until I've climbed out of this pit and I realized, How about today? Like you might never climb all the way out of this pit like you might be in an and like learn to love where you are. And I just thought if my story or one thought like the Airborne, like nobody knows about Airborne, you know, like if one thing could help, it would be worth it.

[00:38:53] Jill (Host): Yeah, like you're saying, thanks to all the people in the past who have shared their stories and people in the future, Hey, if you're listening and this inspires you to share your story, don't wait until you feel like you've achieved whatever that place is um, 'cause when you're in the thick of it, I almost think it's a little more interesting. So Jackie, before we go, what else should we know?

[00:39:13] Jackie (Guest): So, my new mantra is participation, and it doesn't matter how much I participate, just that I do. And so, I think that every day I, I participate, right? I make lunches and drop my kids off at school and go to work. There are really good days sometimes, you know? I would say that there's always, for me at least, being mindful of POTS, doing the things that help keep me afloat and making sure I have, you know, whatever might be an emergency with me, like medicine or really amazing wear, POTS wear, if you will, compression wear. But I could have really great, almost, I hate the word normal, but almost normal days where I just sort of go about my business and it feels good. Those days feel really good. And so, I just want the listeners to know there are those good days, or at least some of us have them, right? And it feels great when it happens.

[00:40:08] Jill (Host): Jackie, thanks a million, and we, we appreciate you so much and I know that everybody listening is wishing you all the best going forward. And hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Til then, thank you for listening. Remember, you're not alone and please join us again.

[00:40:32] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening. © 2022 Standing Up to POTS, Inc. All rights reserved. [Transcriber’s note: if you would like a copy of this transcript or the transcript for any episode of the POTScast, please send an email to volunteer@standinguptopots.org]