S. founded the support organization she wished she’d had

Jill Brook: [00:00:00] 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 with S. S., thank you so much for joining us today.

S.: Thank you. It's really cool to be here. I've been an avid listener for the past two years and it's, it feels unreal to actually be on it. Thank you.

Jill Brook: Well, we are all very excited to get to know you, so please tell us the basics. What should we know for starters?

S.: Okay. I'm 29 years old. I live in New Jersey. We have a beautiful view of the Manhattan skyline from our house. So we're kind of close to Manhattan. I am an occupational therapist in a hospital and I also started and run an organization for teens with invisible medical conditions.

Jill Brook: That's a lot and I'm excited to cover all of that. So, so are there any other basics we should know about you before we move on [00:01:00] to how your POTS journey started? Is there anything else we should know about your personality? What you like to do in your free time? Things like that.

S.: Yeah, so, I think that my personality is very friendly and warm, I'm very outgoing, I'm a connector, a lot of friends, and just easy to connect to people I'm a very big doer, I take a lot of initiative, make things happen, I'm always the one that's like, making things happen, planning vacations, et cetera.

And I think I just have a lot of joy for life. I see the beauty in all the little everyday things, especially since like healing from, from POTS and being in a better place now. It's like every ability that I could do, I just get like all excited from every, you know, every food I could eat, every walk I can go on, everything just feels beautiful.

Jill Brook: Well, okay, you just told us a clue of something exciting, which is that you have come a long way, it sounds like, and that you are doing great. But let's [00:02:00] find out how this story began. Can you give us a snapshot of what your life looked like before POTS showed up, and then tell us what happened?

S.: Sure, so, I was 20 years old when POTS came into my life. I had no symptoms, nothing, perfectly healthy the rest of my life until then. Just living a normal life. I was in undergrad doing my prerequisites for OT school. I was very I'm passionate about like helping people, changing the world.

Just volunteering tons of hours every week, spending time with a kid in the hospital who has had cancer. I big sistered a bunch of girls that were struggling emotionally. I tutored for free in the high school that I went to just very, very, very busy doing good things and I thought that like my life was perfect and everything was good.

Jill Brook: Yeah, and then what happened?

S.: Okay, so basically 2015 I was with my [00:03:00] sister and we both ate a piece of cheesecake that tasted very good but I guess it was bad because we both immediately felt really sick. And we basically both had like really bad GI symptoms, nausea, pain, all the things. And my sister was really sick for like a month, and then she got fully better, but I never recovered from that.

And in the beginning it was just GI symptoms for about three months, and then one day I was walking with a friend. It was like the first day of the new semester, and I was like, this is so weird. I feel like I'm gonna faint. What's happening? Like, I never felt like this before. I never fainted in my life.

I'm not dehydrated. I drink enough. I'm going to faint, but I didn't faint. And that kept happening for like the next few days. Like anytime I was walking anywhere outside, I kept being like, so weird. I feel like I'm going to faint. And then that really quickly, like within a week turned into like a really profound fatigue.

Jill Brook: Wow, so it all started with cheesecake. That's the first time I've heard [00:04:00] that. Well, it sounds like food poisoning. It's not the first time I've heard about food poisoning kind of starting everything off, but oh my gosh. Okay, so then what happened next?

S.: Okay Yeah, so, basically I was I was really, really sick, very fatigued I spent the first year after that going to different specialists every week. I saw about 13 different types of specialists I had so many medical tests, a whole million dollar workup, and everything came back completely normal. I was really sick, I could barely walk two minutes before having to sit down, I spent most of my day in bed, I could barely read, I could barely drive, I described it then as extreme fatigue because I had no concept at that time of orthostatic changes, but now I understand that I had just had a severe lack of blood in my head, which caused me to be completely dysfunctional. And on top of that, my GI symptoms were really severe. Like for a few months, I was just living off of nutritional shakes and plain Cheerios.

I was really [00:05:00] miserable and it was a very dark time.

Jill Brook: So, like, what did your doctors think was going on and how did you eventually find out it was POTS?

S: Yeah, so, after a year of testing I was really at the end of my rope. So, one of the rheumatologists that I went to decided that I must have something autoimmune. So she decided to treat me like that. They just said, you must have an autoimmune condition that causes like fatigue and GI symptoms.

And she put me on some immunosuppressant and actually worked about maybe like 15 percent enough to like make a clear difference that I didn't want to go off of it and enough to say like, Oh, this must be what you have. But now we believe that it's really just because like, somehow mast cells interact with POTS and mast cells are immune cells and so immunosuppressants will also like stop the feedback loop of the, of the mast cells and now over the counter Zyrtec actually works way more effective than strong, really expensive [00:06:00] immunosuppressants but basically I went on for the next couple of years that

this was just some unknown autoimmune condition and that will be my reality for the rest of my life.

Jill Brook: Wow, and you mentioned that you're an OT, an Occupational Therapist, so were you in school during that time?

S: Yeah, I got sick at the beginning of my last semester in undergrad while I was applying to graduate school and I was sick my entire grad school very sick and was diagnosed the week of graduation actually.

Jill Brook: Oh, so you spent your entire time dealing with this. So, okay, so how did it all impact your schooling?

S: So I really don't understand how I did it. I don't think it was normal but somehow I told myself that I wasn't willing to give up on my dreams and I pushed through it. I was commuting to Manhattan every day, so I pretty much sat on the floor of every subway. New York City subway is very clean.

I sat on the floor of every subway station, every street corner. I [00:07:00] napped during every break on the uncomfortable bench in the locker room. I studied with my eyes half closed. I fell asleep every few pages. I don't really know how I did it. I couldn't even walk to the train. That was a seven minute walk from my house.

I had to have someone drive me, but somehow I pushed through and I passed.

Jill Brook: And would you say it was all worth it?

S: Yes, a hundred percent.

Jill Brook: Because you know, I guess you need to tell us a little bit more about how long it took you to find a diagnosis and how you got better, but we need to hear more about your work as an OT as well. So feel free to throw in on any of that stuff.

S: Okay, so, I'll talk about kind of like how I did get diagnosed. So, while I did go to a bunch of doctors every year during like those next three years. After that first year, I wasn't really looking for answers. I was really just stuck on like, I have some unknown autoimmune condition and this is my reality.

Really just because I was so traumatized [00:08:00] by going to doctors. I think a lot of us have dealt with that. So many doctors who don't have answers and were so gaslighting. So I really wasn't open to digging further. I just accepted this reality. And then close to four years after my symptoms started, I started to feel like my story just doesn't make sense.

Like I knew a lot of girls with different autoimmune conditions and none of them sat on the floor. Like it just didn't make sense. Like their hemoglobin could be like zero and their inflammation could be super high while my blood work was perfectly normal. And they could stand and talk to you and they could go to the grocery store.

And I just couldn't do those things. So I had a friend, I have a friend who was a health coach and I was just chatting with her, not as a patient, and she was like, Sephora, I think you have POTS. I think you have this thing called POTS. And she sent me two articles and I read them. And like the minute I read them right away, I was like, this is what I have.

Like, there's actually a condition where people sit on the floor. Like, that's a thing. And all of a sudden, like all my symptoms made sense. [00:09:00] And I plunged into the research cause I, I was like at the end of OT school, we had all these research courses, I had a lot of medical background and I was able, you know, I just watched every single speech that there was, I read every article that it was, that there was and I was like, I know I have this thing and then I saw POTS specialist, I had the tilt table testing, and eventually I had some real answers that made sense.

Jill Brook: So you probably had that moment that a lot of patients have where they get their results back and you're not happy that you have something, but you're sort of feeling triumphant that you, you have an answer, that you figured it out.

S: Well, I really just didn't believe it because I had so many tests that were all abnormal and like, it's not possible. They're going to take it back tomorrow. They're going to say this isn't true. Nobody's going to believe this test result. But yes, there was that like, wait, maybe there's an answer.

Like, that's crazy. Yes. Relief.

Jill Brook: And that's kind of like a big part of the battle, but then the next part [00:10:00] is once you know what you have, can you actually find something to feel better? So what happened with that?

S: Yeah. So I definitely did find a lot of things that make me feel better. My biggest pet peeve is when I hear doctors say like, Oh, we don't like diagnosing POTS because there's nothing to do for it. I'm the first one to say that there is so much to do for it and over the past year, five years since I was diagnosed, I have completely gotten my health and my life like really fully back to the extent that I feel like as healthy as any of my normal peers and I don't feel limited at all.

Jill Brook: Wait. Say that again, but say it slower. I feel like in case anybody was snoozing during that part, they need to hear that again.

S: Thank God, I feel at this point that I don't feel like limited in any more ways than my regular healthy friends at this point. I feel like I just live a normal life and that's, I'm so grateful for every minute of that. Yeah, so kind of like how did I get there is [00:11:00] of course there was like a lot of, a bunch of medications that did make a big difference in trying to figure those out, but I wouldn't have felt better from everything else that I did if it wasn't also on medication and I'm a big believer in them, but I attribute the biggest change to the CHOP or whatever it's called, Exercise Protocol.

So I, when I was first diagnosed, the doctor told me, like, looked me in the eye and said, like, if you ever want to get better, the way to retrain your nervous system is you need to do recumbent exercise minimum five times a week, minimum a half hour, for six months and you're not going to see any improvement for the first three months because that's how long it takes to retrain this nervous system.

Basically like you do this or you won't get better. So I did this on my own at the gym, but I was seeing a PT previously and she was my cheerleader. She was amazing, and she had me email her on a weekly basis of what I did every day at the gym, and she would just, like, cheer for me and, like, keep me [00:12:00] going, and I couldn't have done it without her motivation.

I started on the recumbent bike, and at the beginning, my tolerance was two minutes. And then I had to lie down on the floor at the gym. And then I was able to do two sets of two minutes, and then three minutes, and then five minutes, and then two sets of five minutes, and building up really so slowly.

And basically at the three month mark, I was all of a sudden able to tolerate 30 minutes straight on the recumbent bike. And I did that at least five times a week for the next three months. And then it was March, 2020. So the whole world shut down and the gym closed down as well. And I felt like it was God's way of saying to me, like, come on, you're ready.

Get off your bike, start walking, you're six months in, you can do this. So I started with 15 minute walks and I slowly increased my time and basically my goal at the beginning of the year was that by the end of the year, I wanted to be able to walk a 5K, which is 3. 1 miles, which felt like

impossible. But I finally reached [00:13:00] my goal and I walked a 5K, 3. 1 miles straight. And from going from a 7 minute walking tolerance to 3 miles, it felt like I walked to the moon or something. It was really hard, but I stuck to it five times a week, rain, shine, flu, whatever it was.

And I finally reached my goal. I find that exercising like pumps the calf muscles and brings blood back to the brain. And the more I walk consistently, the better I function the rest of the day. So at times when I'm walking consistently three miles daily, I'm super functional. Walking is my most effective medicine and I'm so grateful for that.

So kind of for like three years, I just always made sure to walk three miles every day and then two summers ago, I was like, I don't want to have that limitation. Why only three miles? I want to be able to walk forever. So I decided to start training again and I challenged that three mile mark and I pushed it and pushed it and over a couple months, I got to being able to do 8 mile hikes.

And last summer, I went to a national [00:14:00] park and my phone recorded that I hiked and walked 50 miles in 6 days. 5 0. So now I pretty much feel like I could do anything.

Jill Brook: So that is so exciting and so wonderful. Congratulations. And I have a question for the people who still have to go through the hard part, where it's just getting through that first two minutes, then five minutes, then two sets of five minutes. What did you think about? What did you do to distract yourself or keep your mind busy during all the boring, painful stuff before you were out in national parks, seeing the beautiful stuff?

S: Good question. I don't have a good answer. I was just, I just knew that if I wanted to ever have a life beyond this, then this is what I had to do. And so I just did it. And I would, the recumbent bike was right next to like the big glass window into like the exercise classroom. And I would watch all those people jumping up and down.

And I'm like, one day, one day, [00:15:00] like you gotta just keep pushing through this because one day you'll be able to do that.

Jill Brook: Yeah, that resonates with me and it reminds me of how I had a few years where I sort of couldn't get off the floor very much, but I would still keep doing my little exercises, especially there was one exercise I remember that kind of simulated poling for cross country skiing because my husband loves to cross country ski.

And I told myself I was doing it because someday I'd be back out there on cross country skis. And at the time, I'm not sure that I really believed it, but then I actually got there and I was so glad that, you know, week in and week out, I had kept doing, kept poling exercises for years when it seemed not very likely I'd ever need it.

S: I think the other thing is that a lot of people are told to do the exercise protocol when they're not really at the end of their rope yet, like they've only been in this for a little bit. I think if it would have been only like a few months or a year and someone said like, the way that you could cure this is [00:16:00] with exercise, and I didn't understand the whole physiology of it.

I would be like, you're crazy, I feel like I'm dying, I'm not gonna get better with exercise. I need some really strong medication, I need to be in the hospital, you know? And so, I don't think I would have been motivated or believed in it in the way that I did. By the time I was diagnosed, everything made so much sense.

I understood this condition because I researched it tremendously, and I understood because I'm an Occupational Therapist and we use exercise to help people. I really believed that if I do this, I will get better. And so when you have that sort of conviction, you can do anything.

Jill Brook: That's great. So talk more about being an Occupational Therapist. For starters, can you remind everybody what that is?

S: Yeah, so Occupational Therapists are, is the field in medicine that basically helps people complete all their daily occupations. So those are all of your regular daily activities. So think about everything that you need to do to function. So [00:17:00] getting out of bed, getting dressed, going to the bathroom, brushing your teeth, cooking breakfast, walking to school, being a student, being at work, whatever it is that your normal daily things are, driving, doing laundry, etc.

And we basically help people be able to complete their daily occupation. So one field of OT is working with people who were never able to complete those things, like people who are born with a developmental delay, helping them to be able to then complete be more functional. That is not the field that I work in.

I work with people that were once independent or more independent. And then they had some sort of injury, illness, surgery, something that put a a stop in their independence. And then I helped them get back to being back at their prior level of function, whether that is in a curative way, like they're actually doing everything they used to be able to do, [00:18:00] or through adaptation.

So, you know, either, let's say I have a hand therapy patient who broke their wrist, so either I'm teaching them adaptive techniques to be able to cut vegetables with their wrist pain, or I'm actually doing therapy to ease that pain and increase their range of motion so that they're able to do everything that they used to be able to do.

Jill Brook: Very cool. Do you ever get POTS patients that you work with?

S: So, I work in a hospital and I work both in upstairs on the regular hospital medical units. And I also work in the outpatient clinic doing hand therapy and vision therapy. In the hospital I don't believe I've ever had anyone with POTS because they usually just consult OT for people that they think are older.

They do consult us when people fall, so I guess theoretically that could be, but I think if there was a 30 year old that fell, they wouldn't really think of OT. They [00:19:00] just think that you're fine. So not really in the hospital, but I do get to see, you know, monitoring vital signs all day, you know, watching for hypotension stuff in my elderly patients.

And then in the outpatient clinic, I've definitely seen patients in hand therapy that have lots of different joint issues from hypermobility, and they also have a diagnosis of POTS. So that is always fun for me. And then another thing that I specialize is in post concussion vision therapy.

And that is really fascinating to me, because for some reason, a lot of people with POTS present with similar symptoms as like, post concussion syndrome. I would love for someone to discover exactly why that is. I'm assuming it's because of poor poor brain blood perfusion. And I know for myself, I had tremendous vision symptoms.

I had, when I was like first got sick, I could barely read a sentence. I mean, it was so hard for me. Driving was miserable, like looking around was so [00:20:00] hard, vestibular symptoms, all of that. So, actually when I got my first job and they're like, we do vision therapy here. I was like, oh no, I'm not going to be able to handle that.

I won't be able to tolerate it. I'm going to throw up. And I, it's really cool because through doing vision therapy on my patients, I basically did it on myself because I'm tracking their eyes the whole time. So I'm doing everything that they're doing. And in the beginning, it was really dizzying, headaching, nauseating.

And after a couple of months, slowly, slowly got easier. No more vision symptoms. So, I really believe in it. And I know that it could definitely help for POTS patients. I've had a bunch of concussion patients that I believe had POTS but weren't necessarily diagnosed.

Jill Brook: So can you talk a little bit more about what vision therapy is? Because probably a lot of people are listening right now who are saying, I have vision issues and my POTS started with a concussion. What, what is this?

S: So we do a bunch of [00:21:00] different exercises and it's like half hour sessions because people can't really tolerate more than that and we do a visual tracking. So, just like following a popsicle stick, like, really slowly, depending on the patient's tolerance level. Some patients could tolerate, like,

10 reps each way. Some patients it's like one rep and their eyes get stuck, or like they start having like nystagmus, which is like when the eyeballs go like back and forth very quickly. So we go like at the patient's level, whatever they're able to tolerate. And then we do what's called saccades, which is like looking back and forth between two points.

And we do it like on a metronome. So imagine like, every time you hear like the beat, then you like go back and forth. And then we do a lot of exercises with like reading and looking back and forth from different sides of the page. And then we work on convergence, which is like, as something gets closer to you, are your eyes able to converge to see that picture?

You're supposed to be able to see, like, 18 centimeters away from your nose. A lot of patients, it's like across the room already. If [00:22:00] something starts getting closer to them, their head explodes. So basically just doing these exercises, again and again over a couple of months and slowly making progress, and I would say 90 percent of my patients, it's really changed their lives.

Jill Brook: Wow, that's amazing. Is there any place that you know of online where people could go read about this? If they're hearing this and saying, Oh my goodness, I need to know more about this vision therapy.

S: I mean, probably just Google it. I know I took like a few official Occupational Therapy continued education courses on it, but there's probably literature on it.

Jill Brook: Okay. Very cool. And I know that like, we've spoken to a number of like, Functional Neurologists who use I guess maybe what they would call vision therapy or vestibular therapy and I just wonder how similar or different all that is but it is fascinating all these new ways that it seems like some of you [00:23:00] guys are finding to really help help people get some of their abilities back.

So that's fantastic.

S: I think what's interesting about POTS is there are so many different pieces. And so people will try one thing and they're like, Oh, I'm not cured from my POTS. And I don't believe that that's the case. I believe it's kind of, imagine you're at the park and there's a big, large picnic blanket on the grass and you lift up one little corner.

Now one corner is lifted, but the whole blanket is still on the floor. Then you lift up another little corner, then another little piece, another little piece. Eventually, when you do all the things together, the blanket lifts off the floor and you're like, Oh, I feel good. But then when you drop one little thing, then you're like, I'm on the floor again.

What happened? So, I think there's so many different symptoms and it's hard for patients, like, you know, they start wearing compression and they're like, this doesn't help me at all. But then when they're feeling perfect and they don't wear compression, they're like, oh my gosh, I'm not okay anymore. So, I think, you know, vision [00:24:00] therapy is one piece of it.

I don't think it's going to cure your orthostatic symptoms, but I think that it could help patients function tremendously if they're having those symptoms specifically.

Jill Brook: So, so obviously you had, had quite a journey from being pretty debilitated and being pretty bad off to now you say like you feel like you're no more limited than any of your friends. Have you had setbacks where you had to like, I don't know, where you felt like you were back in the hole and you had to dig out again, or was it pretty much

a smooth ride since you have felt better?

S: Not a smooth ride. 2 years ago, I was at like the height of health. I had just trained to be able to do like 8 mile hike. I was feeling perfect. And so my doctor gave me clearance to be able to fast for like one of the Jewish High Holidays that like you really have to fast unless you actually really, really cannot.

So we're like, oh, you're fine. You're all better. Like this doesn't even, it's not a thing [00:25:00] anymore. You can fast. Attention all POTS patients out there. I don't care how healthy you are. Don't ever fast, ever. I lied in bed the whole time. I did IV fluids before and after just to like, make sure I was fine. I was at work the next day and I was like, my heart's racing.

This is so weird. What's happening? And I carry a pulse ox because of my patients. And I took my heart rate just walking down the hall and I was like in the one twenties and I've always been in like the seventies, I know, because I have the pulse ox on me and like my orthostatics were fine. I'm like, what is happening?

I was like, ha ha, funny joke. I fasted and now my heart rate's high. I'll be fine tomorrow. Anyways, it was a couple of months until my heart rate calmed down. So that was very challenging because I thought like, oh, this is over. And now I see like, you could be feeling amazing, but you still have this condition and you still need to take care of yourself.

And hopefully we can all, you know, slowly wean off different treatments, but you still have this thing.

Jill Brook: Wow. I feel like that's a valuable, valuable [00:26:00] nugget right there.

S: Yeah, even like people that need to be NPO for a test, like before a colonoscopy, or, well then you could drink, but like, for maybe some surgery or something, if you can't eat, like, be careful. I'm sure not everyone is the same, and this wouldn't happen to everyone, but yeah.

Jill Brook: Wow. Wow. Because I'm sure you were careful to stay hydrated even though you were not. Like, were you still drinking water or when you were fasting?

S: No, it's like no eating or drinking for 24 hours.

Jill Brook: Okay. Interesting. All right. So that's a good point though, to be that we need to be clear about what we mean when we say fast.

Cause some people, when they say fast, they're still doing clear liquids and some people, they would still be able to add electrolytes to their drink. And I guess you don't know how you would have done, but at least for you, no food, no drink cost you months.

S: Yeah.

Jill Brook: Okay, I'm sorry about that. So, throughout this whole experience, I'm sure you would have rather not [00:27:00] gone through this, but have there been any silver linings at all?

S: Yes, for sure. So I mentioned in the beginning that I started and run an organization for teens with chronic, invisible, non life threatening medical conditions. So actually about like a year after I got sick I was just very frustrated that there was no support out there. The Jewish Orthodox community has so many organizations that help everybody.

There's an organization for people with infertility. There's an organization for kids with cancer. There's an organization for kids of parents who have cancer. There's an organization for siblings of kids with special needs. Like everything and there was just nothing and I felt so so so alone and I was very angry about it.

I was like, why does no one care just because I'm not in the hospital just because my hair didn't fall out? Like I am so sick and why does no one care? So I had a friend that had cancer and she kind of pointed out, like, the discrepancy to me, like, isn't it crazy how, like, there's nothing out there and can [00:28:00] you imagine, like, going to a retreat and there will be 50 other people in the room that all had the same thing as you?

I was like, haha, that could never happen. And we kind of, like, made this idea in our head, like, one day we're going to start an organization for Jewish teens that are, you know, are dealing with this. And it would have just been an idea because which people so young start an organization? But I went to visit this woman in the hospital.

Just like to volunteer. And she was, she had cancer and she was telling me going on and on and on about all the wonderful organizations that have been helping her, her and her family. And she thought she was inspiring me. And meanwhile, I was just getting more and more and more angry. And we got back to her room and she, I said, one day I'm going to start something for girls with invisible medical conditions and she's like, so do it.

I'm like, no, no, no, I'm 21. Like, I can't do this. She's like, do it. How? So she's like, well, next time you come visit me, tell me that you did something about it. So as the [00:29:00] saying goes, when a dying lady tells you to do something, you do it. Thank God she healed and she's doing great now. She's in a good place, eight years later.

But I basically went home and I was like, shoot, I have to do something about this. And so I basically started doing research, spoke to people in the community, and you know, me and my friend, we thought, okay, we'll help maybe five people. We'll try, we'll see what happens, but like, if we help five people, it will be worth it.

Fast forward eight years it's turned into a really large organization. We've helped over 600 girls, from all over the world. So anyone like, Jewish Orthodox with chronic invisible non life threatening medical conditions. We have a big England branch now with over close to 100 girls. We do events, we do weekend retreats, we send out care packages, pick me up cards, we pair girls up one on one with someone with the same or similar condition, either as like what we call a teammate, which is like a friend like a

peer [00:30:00] or what we call a mentor, which is like a big sister, someone who's like in the next stage of life, been there, done that, I went through it, you'll be okay, you know, I got married and had kids, you'll be able to get through this as well and they speak like once a week, so that's a big part of our program, and it's just incredible to see these girls have such a different experience specifically in the Jewish community there is a lot of secrecy about health conditions and people have a tremendous amount of shame and for them to be able to come to the retreat and, you know, be in like a room with 10 other girls that are all their age and just laughing the whole time and having fun together and being open about this, like, they're just never going to experience their condition in the same way.

So, it's been really an incredible experience, a crazy ride, and I'm so grateful that I've been been able to facilitate this.

Jill Brook: Wow. [00:31:00] Wow that sounds amazing. Tell us more about like how you run it and how have you gotten that many people involved from all over the world? I mean, it just, it sounds, it sounds really amazing.

S: Yeah, so I guess there was just really a tremendous need also in the Jewish community in the Orthodox community specifically. A lot of people, especially teenagers, don't have access to social media or online support groups, so there was really just this, complete hole like, it's not like they could just go on Instagram and find a hundred people that all have the same thing.

So there was just this tremendous need. And once people started hearing about it, then there's so many people with medical stuff specifically like Crohn's and colitis is, or anyone could have it, but like Jewish genetically very strong. So there's like, we have over 200 girls with Crohn's and colitis that we support and I don't know, kind of word of mouth, we put articles in different [00:32:00] Jewish magazines when we have our fundraising campaign, then, like, it's a crowdfunding campaign so people hear about it from that and yeah, we get about 100 new girls every year, so yeah, it's amazing.

And the other beautiful thing is like, we don't really discriminate between like members and mentors because most people join as a member and then they become a mentor and that's the whole beauty. It's like you join because I'm struggling and I'm a taker. And then you grow and you, you become an amazing person and you get confidence and you, you feel like, you feel like you could become a mentor.

And then we reach out to them two, three years later and we say like, Hey, are you, like, you seem to be in a good place now. Could you mentor someone who was like you three years ago? And the same thing with our volunteers we have like two paid people, our secretary and our intake coordinator, other than that,

all the different roles, like the person who, you know, the people that run all the different committees, most of them are from [00:33:00] within the organization, like girls that joined again because they were struggling, and then they said, Hey, like I have this talent, like I want to help out with this or, you know, we reached out to different girls.

So, it's really beautiful to see that growth and empowerment. Like the organization is all about like empowering people to you know, live your full life with your condition. And we really see that with our girls. So it's been

really beautiful. One like incredible moment for me three years ago we had our first weekend retreat and the morning after it was over I just started crying

with my friend that I started it with, and we were just like, why? Like, why me? Like, why was I worthy to, to like, start this? Like, it's crazy. And we were like, it's, it's nuts, because when we first got sick, we were like, why me? Like, what, like, God, why did you choose me to go through this? Why did you ruin my whole life?

Like, why me? And then, [00:34:00] years later, to be able to look back and be like, Wow, like, I'm saying the same thing, but in the opposite. Like, why do I deserve this, like, wonderful gift? And you realize that, like, God has a plan for everyone, and, like, there's a reason why you go through what you go through, and you gotta just take some initiative and you know, use what God gave you.

But it's, it's really, I feel really blessed.

Jill Brook: Well, that is, that's phenomenal. And I hope that the younger people listening right now are feeling some hope based on that. And, and so, yeah, now that you have a little more perspective and time and experience and age, if you could sit down with your 20 year old self, what would you tell her?

S: So there's so much advice I could tell everyone. I've learned so many things along the way. And the thing is, I think that my little self wouldn't have wanted to hear any of it. You know, I could tell her, like, [00:35:00] you're not going to be sick forever, but she wouldn't care, you know, she'll be like, but right now I'm sick, you know, or I could tell her, like, you're going to be grateful to her this one day.

And she'll be like, I don't believe you. I don't care, you know, all those things. So I think really it's about just holding her hand and being like, you're amazing. You're doing the best you can. One day they're going to figure this out, like, and just validating everything that she's going through. I actually wrote a poem to my younger self a couple years ago.

So, is it okay if I read it? I think

it's very powerful. Little me, sick and scared, all alone, feeling despair. Little me, lost in a scary land, big me can come, and now hold your hand. I'm here for you, dear one, you're stronger than you think. Though the path is dark and windy, but I promise you won't sink.

You're trying your best, it's your body, not your mind. Though the medicine doesn't though medicine doesn't get it, one day a diagnosis you'll find. Your illness might consume you, it's getting very dim, you think you'll never smile, but meanwhile you do [00:36:00] swim. You're swimming through the toughest waves, you try and try again, and when the ship's about to sink, you fight right past the pain.

Little me, it's okay to be scared, the situation's scary, I wish I could have told you then that you won't forever be so weary. The light turned on because you turned it on, you found the light even though your condition isn't gone. You had the strength all alone, though it felt like it was hidden, but really you did amazingly at the test that you were given.

I'm proud of you, did you know, of how you plowed right through. You're my hero, little me, I hope you're proud of yourself too.

Jill Brook: Aw, that's beautiful. That is...

S: It's cool how years after I wrote that, it still like makes me cry because It's like, it's really true. Like, everyone who's listening to this who's struggling right now, like, by you waking up every morning and putting one foot in front of the other and doing what you need to do, you're a hero. Like, everyone who's feeling like they're in the dark and they're having a hard time, like, you're doing the best you can.

And you're, [00:37:00] you're amazing. You're doing everything you can. And it's, you have to just give yourself credit and hold your hand and give yourself a little hug.

Jill Brook: Aw, that's beautiful. So beautiful. Okay, so to stop everybody's little tears there after that beautiful thing, let's do a speed round. You can just say the first thing that comes to your mind.

The drink you find the most hydrating?

S: I recently started making, like, a little, like, slurpee kind of slushie with, in the blender, with ice, water, electrolytes, and just a little bit of fruit. And I drink it on my way to work, and it is so good.

Jill Brook: How many other POTS patients have you ever met face to face?

S: A lot. I've been to a bunch of dysautonomia conferences, and also through the organization I run, we have a lot of POTS people with POTS. So, I have a lot of really close friends with POTS that I know, like, from the community, and girls from the organization.

Jill Brook: [00:38:00] So

you are the first person to ever answer a lot. What is some good advice anyone ever gave you?

S: So early on when I was sick, my mom used to always tell me forever is a long time. Whenever I would say, people would say like, oh, are you gonna have to be on this diet forever? Are you gonna have to are you gonna have these symptoms forever? Is this conditioning last forever? And she would always just stop me and be like, forever is a long time.

And I used to get nervous from her saying that because I was like, right now it's my forever. But now that's what I tell other people. Just tell yourself, forever is a long time. Like, medicine can change in 20 years, in 5 years, in 10 years. Medicine is changing. There's so much research. Even if you think you're stuck where you are right now, who knows what's going to be forever.

So, don't, don't stop yourself when your brain wants to think forever. Things can always change.

Jill Brook: Amen. You know, my husband is really into AI, and so what I keep hearing is that like, a month is forever now in the world of AI, and I have to think that's gonna affect [00:39:00] medicine and all this stuff too, soon too.

What is a gift you would send to every POTS patient if you had infinite funds?

S: So there's a really cool program. I don't know if everyone's heard of it called Beads of Courage. It's for like, kids with cancer or other really severe disabilities. But anybody can make it on their own or buy it from them. Where basically like everything you go through medically is a different color bead.

So every blood test, let's say, is a red bead. Every overnight stay in the hospital every night is a white bead. Every doctor's visit is a green bead. Every new medication change is a blue bead. Every medical test is whatever bead. And you make this strand as you go along your journey, or you could do it retro, retrospectively.

And it is so healing to have that long strand of beads that you can hold in your hands and see what you went through and it's such good like internal validation. You don't need anyone else to say like you've been through a lot. You could see for yourself exactly what you've [00:40:00] been through or even like when you come home from a stressful doctor's appointment and you want to just have something like concrete to be like, I went through this.

You take that bead and you put it on the strand. I did it for myself and it's, it's really healing. So I would give everybody a set of beautiful glass beads and a string.

Jill Brook: Wow, that's so creative. I've never heard of that before. Okay. Last speed question. What is something you're grateful for?

S: Being able to eat fruits and vegetables again after like eight years of not being able to

eat anything.

Jill Brook: People might suspect you're a POTSie when?

S: Either talking to me in the hallway and I just sit on the floor.

Jill Brook: Well, thank you so much for today. We just have a couple more questions. What do you wish more people knew about POTS?

S: I guess that it's treatable. that you could get better. Whatever better means is different for each person, but don't ever give up on your patience and just keep digging and [00:41:00] there's people can get better from this. Like, this is not a death sentence.

Jill Brook: And last question, why did you agree to let us share your story today?

S: I believe that my story is a story of hope. And I know when I was really sick, I watched other people's POTS stories of hope, and I was like, no way, that's not possible. This person was so sick, and now they're like, rock climbing? Like, how? So I feel a responsibility to come on and tell other people that there is hope and it could happen for you too.

Jill Brook: Well, thank you so much, Sephora. Thank you for sharing your story and your insights and your wisdom. And we appreciate it so much. And I know that everybody listening is saying that is a great story and and a really hopeful one for them too. So I know everybody wishes you all the best going forward.

S: Thank you.

Jill Brook: Okay listeners, that's all for today, but we'll be back again next week. Until then, thank you for [00:42:00] listening, remember you're not alone, and please join us again soon.