From a POTS Mom's Perspective, Paula from California

[00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. Today we are speaking with Paula, who is the mother of a POTS patient. And Paula, thank you so much for joining us. [00:00:17] Paula Johnson: Thanks for having me. [00:00:19] Jill Brook: So let's just start off with where are you and what kind of background information should we know about your family? [00:00:25] Paula Johnson: Well, I live in southern California, just outside of Los Angeles area. And I have a family of five. There's myself, my husband, my son is 22, but away at college. And we have one 18 year old who is also in college, but she's living at home right now. And then our POTS patient who just turned 15 and is trying to go to freshman year of high school trying. [00:00:54] Jill Brook: And just before we get into kind of your family's journey with POTS, can we just ask you a little bit more about you? What do you enjoy doing? What would people say is your personality? [00:01:05] Paula Johnson: Oh boy. Well I've kind of always been like people joke and they're like, Oh, party Paula. I just enjoy having a good time. I'm an elementary teacher kindergarten, so, I have to be pretty animated to keep their attention . And so that's kind of my personality. But it's taken a big change I will say in the last 12 to 18 months. [00:01:31] Jill Brook: Because of POTS. [00:01:32] Paula Johnson: Yes, absolutely. [00:01:35] Jill Brook: okay. So I take it that it's your daughter who has POTS. Right. [00:01:40] Paula Johnson: Yeah, it's my youngest who is actually non-binary. So we use, they them, and my youngest name is LJ. [00:01:50] Jill Brook: Okay. And so did they have a fairly POTS free life until 12 or 18 months ago, or were there always signs of POTS? [00:02:00] Paula Johnson: Looking backwards. There were some signs but we definitely chalked it up to oh, you just have a sensitive tummy or always been very emotional, so it was like, well, you're upset. So, that's why you are having these physical reactions to your emotions. But then it was I wanna say last July, so just before the school year started when these passing out episodes started. And it's been a long journey. Anyway, so yes, about a year, year and a half ago when the POTS symptoms became not something that we could kind. I don't wanna say poo poo , but you know, we were like, Oh, you're okay. My belly's upset too, that kind of stuff. But come eighth grade, it was a whole different ball game. [00:02:55] Jill Brook: So what happened? Was there an event that made you say, Okay, time to see a doctor or time to look into something more serious, or what made you make the switch? [00:03:05] Paula Johnson: Well, my husband and I consider ourselves lucky in the POTS journey side of things because LJ's School district nurse actually said this could be POTS. LJ kept passing out a typical teenager, right? So we're thinking, you're not drinking enough water, you're getting dehydrated, you're not eating enough that kind of thing. So initially we were not thinking it was anything serious. And it wasn't until this district nurse mentioned this could be POTS because the episodes, the pass outs were happening more often, but they tended to happen not at home, they went ice skating one time and it happened then, and at school it was happen. And so when she reached out and said, I think this is what it could be, and I said, POTS, what's POTS? ? That's not a thing , but turns out it's a thing. And it was at that point we got lucky because this nurse had experience with another student in our school district who also has it. So she had experience that way. and she works part-time through UCLA. They have a POTS clinic there. So it was kind of her prompting for us to reach out. So then we spent a good six to eight months diagnosing, but also ruling things out . Went through so many tests. But from all the things I've read since and through the things I've read that you've published and listened to, it's pretty typical for it to take a long time for people to realize what it is. and so on one hand I feel we're lucky because I think our learning curve was a little bit shorter. But it was really at the prompting of , it takes a village . It was definitely a community thing. And this nurse was wonderful, put us in touch with the other family with their permission obviously, and we've met a lot of families now, adults and children that deal with this. And coincidentally, LJ's kindergarten teacher has it. And LJ is a freshman in high school now, but for her, it happened after a surgery and that's when she started having issues. So, I feel very blessed on one hand because I have a lot of people's brains that I can pick and say what did you do? How did you handle this? Does this happen to you? I'm finding the struggle with LJ is that POTS impacts them that passing out, it's the passing out [00:05:48] Jill Brook: Well, I was gonna ask, what kind of impact does that have on social life being at school activities? I imagine driving gets gnarly. [00:06:00] Paula Johnson: Well, LJ's already been flagged by the state of California cannot get a driver's license. All of their friends are 15, 16 years old and getting permits and getting driver's license. that's heartbreaking to watch. Heartbreaking to build LJ up when they're feeling down about it. It has greatly impact school. There are times when LJ passes out five, six times a day. The district has asked that they be in a wheelchair. As a parent, that was very hard for my husband and I to agree to because you have this child who is a typical child growth and development and now all of a sudden falls over a lot. And first of all, it's scary because they can get severely injured. California, all of our schools, are like concrete jungles. That's all you got. So walking from class to class, they can fall and get head injury. So they're now in a wheelchair at school. And of course that has a social stigma to it. But again, I do count us blessed to some degree because LJ has my personality and kind of wants to be involved in everything. And the wheelchair has not been an issue. They decorate it. And , everybody knows LJ at the high school. Pardon the pun, but they just kind of roll with it, and, and deal with it. However, California right now is having horrible weather and we're in this extreme heat wave. And so basically LJ hasn't been able to attend school for the last couple weeks because they keep passing out. The heat is just way too much. It's been of course, the most impactful on LJ and they're devastated because they want to be at school especially coming out of the pandemic. This group of kids, they don't wanna be at home. Maybe three years ago that would've been different, but my kid wants to be at school. We're trying to find a solution to make that happen as best as possible. [00:08:20] Jill Brook: There's so much there and I guess as a teacher you are probably always watching families and children try to grow and develop and face whatever challenges are natural to their stage, and I guess I'm wondering if you have thoughts about what POTS adds to that mix, because I'm assuming that as a teenager, everything is so hard, right? At least it was for me, I didn't have that outgoing personality. But I'm just wondering, what do you think changes when you add this additional challenge on top of everything else? [00:09:01] Paula Johnson: LJ does a really great job. Loves public speaking, loves that kind of thing. Wants to be involved in speech and debate. Joined the speech and debate team, or had to try out and was accepted. But came to me a couple weeks ago in tears and said, mom, I can't do it. I can't I'm gonna try not to cry. Because what's happening is so much of their energy is just getting out of bed. Even this morning they were sitting in their bathroom putting makeup on. I went back to check on them. They were totally passed out, so didn't make first period. Luckily, my husband works at home and so he can stop what he is doing, take them to school when they can get there. But it's hard because not only are they missing out on the things they want to do after school, the extracurriculars, but they can't even get to their classes. And it's not the same, if you're not there to take the notes or hear the lecture. And so, last night was in tears saying my grades are dropping. That is perspective because this is a student who had straight A's and is now getting B's so , most people would go, That's still pretty great. But that's not what LJ's expectations are for themself. They really, really want straight A's. They wanna be involved in everything. They're in student body government at school. And so just having the energy to attend class is hard enough. Every time they're not in class, they have the makeup work plus homework. but when LJ gets home from school a regular day, maybe there's been one or two pass outs, they need to come home and go to sleep. What 15 year old does that, right? Like, that's not the 15 year old's life. So they're watching all of their friends go to cheerleading and go to the football games and so on and so forth, and it's devastating. They're trying to have a positive attitude. We're all trying to have a positive attitude about it, but you're watching your teenager who, like you said struggles anyway, Teenagers struggle anyway, right? It's just a really awkward phase. So add all of that hormones and whatnot on top. Now you are not gonna be able to drive and you have to be in a wheelchair. Maybe you can't make it to all your classes. Maybe you can't do speech and debate. They wanna join comedy sports. I'm not sure that's feasible. And it's just because it takes so much energy to get through the everyday things that the typical child can get through. [00:11:45] Jill Brook: And is there any element of self-consciousness passing out in front of your whole class? [00:11:51] Paula Johnson: You know, it's interesting, again I said I feel a little bit lucky. LJ has a really great group of friends who just roll with it again. LJ passes out. They literally know what to do. They lift their legs up. They do like a light sternal rub, not like paramedic sternal rub, but, it usually wakes them up and then they just keep going. [00:12:17] Jill Brook: Oh, that's great. Wow. [00:12:20] Paula Johnson: LJ's friends are a blessing in all of our lives. So if LJ wants to go to the mall, there was a few months there where I said, You know what? Absolutely not. You can't go to the mall with your friends. You could get hurt. People have called 9 1 1 a lot. You know, they have this person who's passed out. They can't wake them up. What do we do? But. Their friends allow it to happen. So they take their wheelchair, they go to the mall with their friends. If anything happens, their friends are all over it. They know what to do, they call me. It's been life altering is the word that I keep using. It's been life altering, not just for LJ but for the rest of us. My middle daughter chose not to go away to school, is just doing community college right now. And initially I was saying, No, you need to go away. You need to go away. Well, it's turned out to be a blessing in disguise because she can be around to fill in the gaps when my husband and I can't be there. So it's impacted the whole family has changed all of our lives. We live in a two-story house, so if LJ is having a particularly bad day, It's nerve-wracking to say, Okay, go up and down the stairs. You could be home alone. So we've had to make a lot of adjustments. And LJ doesn't have energy, but sometimes we feel at the end of the day, neither do we. Cause on top of it, we're both working full time. We have other children. Meeting LJ's needs is a challenge. [00:14:02] Jill Brook: So at the end of the day, it can be exhausting to everyone. [00:14:06] Paula Johnson: We're all cooked. We're all cooked. And it's hard for the rest of us, to keep up the fun stuff. My husband and I love to go out with friends, whatever. We need to make sure that LJ is safe before we can do that. So it, it's been very taxing to, to go from having a typical child, albeit a teenager , who's grumpy and moody and, mouthy and all that good stuff. To then go to a child with a chronic illness and still manage everything else at the same time. I've been considering taking a leave from work, which is heartbreaking to me because I love what I do, but at some point I have to say, I have to put my kid first, you know, with a hard life didn't end up the way we envisioned. So we went from like a typical family, living the dream and we're still living the dream. But we've had to make a lot of adjustments collectively and LJ's angry, an angry teenager now of all the things that they're missing out on. So now we're going to family therapy. But again, that's taxing on your time as well and All the medical appointments, trying to make that work with LJ's schedule my schedule. My husband's schedule. And as you know, I know you're a POTS patient as well, to get those appointments, it takes forever. So months could go by. Months could go by, and the symptoms have altered by the time we get to whatever specialist we need to be seeing. We were signed up for the UCLA POTS Clinic, but we've been on a waiting list and so we finally have an appointment coming up in October. Tried to get in with someone at Cedar Sinai who is very well known and he doesn't see pediatric patients. So they said, But you can apply. So I sent all the medical records and they called and said, Hey, you're in, we got your kid in. And I was like, This is amazing. Great. I can't wait. And they said and you're lucky because you only have to wait until April [00:16:24] Jill Brook: Oh, [00:16:25] Paula Johnson: And that was June. [00:16:27] Jill Brook: So 10 months. [00:16:28] Paula Johnson: 10 months to get in, I still have the appointment. I'm hoping that we don't need it. I'm hoping that we can figure things out through ucla. But we're really struggling. We can't seem to find the right combination of medications and lifestyle change and not to throw poor LJ under the bus, but this is a 15 year old who only wants to eat carbs. [00:16:54] Jill Brook: Sure. [00:16:55] Paula Johnson: doesn't have time to stop and drink water all the time because, I've got Instagram to look at and I've got this to do and that to do, and you know, so just trying to be a typical teenager, it feels impossible sometimes. [00:17:11] Jill Brook: Yeah. So you had mentioned at the beginning that you felt like your personality had maybe changed in the last 12 or 18 months with all this. And I absolutely see how it's a part-time, if not a full-time job, just to deal with trying to get in with the good doctors and good programs and things. Do you mind talking about the personality piece? [00:17:37] Paula Johnson: Sure. I don't mind. I feel I'm gonna try not to cry again I feel I'm tired. I'm exhausted. I feel beat down many days. one, because as a parent you can't fix it, right? Mm-hmm, you wanna fix stuff for your kid and you can't, So there's that piece of it. There's the loss of time. There's the loss of typical activities. My niece is getting married in a couple months, so we're flying for the first time since this diagnosis, and I know we're gonna need to have a wheelchair with this. So those kind of things I feel, have changed me drastically. I don't have energy at the end of the day for any me time. I'm the kind of person who I've always worked out consistently, you know? I don't work out now. I don't have the time my lunches as a teacher is 30, 45 minutes, really, you get maybe 10 of those to yourself to actually put something in your mouth. So instead of using the restroom and eating my lunch and dealing with student issues, I'm trying to do all of that while also making phone calls to medical providers. But of course it's their lunchtime too, so you can't reach them. And then they can't call me back because I'm a teacher. And I'm not the same person I was. I find that I avoid some things. I find that I avoid some social situations because it's gonna be too complicated, which is terrible. I used to be the first person to respond to a text and be like, Yes, absolutely, let's go out to dinner. But every time we go out to dinner, now LJ passes out just the process of sitting there eating, it's a social thing. And, Before you know it, the poor kids got their head in the plate. So, it's kind of turned me from a fun, happy, go lucky person to not happy go lucky. And unfortunately for us, the timing was really bad because we were coming out of the pandemic. So we were already socially limited, right? Like the whole world. And then just as things started to open back up, my kids finally got back to normal school. Things started happening and so to some degree we almost feel like we're still living the covid life [00:20:07] Jill Brook: Right, Right. Less social, staying in more. Mm-hmm. [00:20:12] Paula Johnson: It's also hard, I've noticed on our extended family and friends who with good intentions are saying, Just come, You should come You should be here. It would be good for all of you. That kind of thing. It's just too difficult and it's difficult for them to understand why it's so difficult. [00:20:40] Jill Brook: Right. [00:20:40] Paula Johnson: and everybody has really good intentions, but it is sometimes just too much for us. We just need to step back and take a break and everyone wants to help, but there are some things that cannot be fixed. [00:20:56] Jill Brook: I was gonna say, that is one thing that always gets me. There's a number of situations in chronic illness that can be bummers, but I know that the ones that get me the most are when people are trying so hard to help and it just makes things harder and it makes you feel even more alone and isolated because to go into explaining, Why, or to try to make it work, it just gets harder and harder, but they only want the best. And I don't know if there's a name for that kind of situation. I feel like it needs of those German word names, like combined some [00:21:37] Paula Johnson: Right. I agree. I agree. Cause that's been a big thing. Everyone wants to help so they make suggestions and it's exhausting to continue to explain why. Great idea. However, that doesn't work, [00:21:52] Jill Brook: Mm-hmm. [00:21:52] Paula Johnson: and so that's why I have found that for me, it has changed me in the sense that I find that I'm pulling back sometimes because I'm just tired. I'm tired of having to explain it. I'm tired to having to justify. Our family, same thing. They will say, What about yoga ? Everybody wants us to try yoga. We do yoga and LJ falls over. So it's also a hard concept for anybody, at least I would say in America where we are so lucky to have healthcare. Most of us, not the whole country, but it's hard for us to go wait, there needs to just be a pill. Why can't they just take something and fix it? And we struggle with that too. I struggle with that. Why? Why can't something work? There's gotta be something. And sometimes there's not something. And so just we are coming to terms with that, my husband and I, and it has taken a long time. It's taken 18 months and I'm still not totally there. But to bring other people along with us is really hard and exhausting. And they are not living it every day. [00:23:01] Jill Brook: Well, sometimes I hear from families that it's even maybe a miracle if even mom and dad stay somewhat in sync in just in terms of believing is this real? What should we do about it? All that kind of stuff. Can I ask how your husband has done with this? [00:23:19] Paula Johnson: I would say that it took him a little longer than it took me. But some of that I think is the difference between whatever roles are in the household, right? Like I'm the social one. I'm the one who said, Oh, can I get the number of this person who you said their child has POTS? I'm the one to reach out and have the conversations. And again, to some degree, I feel lucky. I did have those kind of conversations with some families who did exactly what you were talking about to the point where they were nearly divorced because one believed the child, one didn't believe the child, or they both believed the child, but very much felt things should be handled differently. I think the wheelchair was the hardest thing for my husband. To watch your child be in this wheelchair until he himself witnessed a really, really scary moment. And that was the catalyst for him to say, Yeah , this is necessary. This is needed. I feel lucky because he and I are pretty much on the same page, but had, I not had all these people that I could reach out to, to pick their brains. I don't know where we would be. LJ is always acting, always in plays and that kind of thing, so, really initially it was like this just you trying to get attention, you know? What goes through our heads as parents, we all do that, right? Like, Oh, you're fine. Shake it off. You're fine. And I think some of that is denial, not wanting to accept that there's something more. But I think he and I are getting there. We are getting there and, we're lucky we had the support system that we do, at least in support of understanding the condition and all that goes along with it. [00:25:12] Jill Brook: Yeah. Well, I'm always blown away by how it seems like the patients who are doing at least sort of okay. It's oftentimes because they have a super mom or a super dad, or a super spouse or a super supporter, and I worry about not hearing too much from the people who don't have that because I worry that they're in such a bad place that they're not here in the community speaking to us. [00:25:38] Paula Johnson: for sure, for sure. Because I will tell you that you know, when talking about how it's kind of changed me, I was always fun, fun, fun, positive outlook. and I'm not, and I recognize that in myself and that it's something that I'm gonna need to work on. But again, I'm back here I need to get back to a happier place. However, my kid comes first, right? So Moms moms take a back seat. Naturally. They take a back seat and dads too. But then not having a support system, I'm sure is just 10 times worse. I could see where it would be worse. [00:26:16] Jill Brook: So can I ask you about your role as teacher? Because you know the CDC statistics, I forget what they are exactly, but it's something to the tune of a very high percentage of young people have a chronic condition, but when I hear that or look into that, I think, well, a lot of those chronic conditions probably don't impact your day to day life that much. Maybe you have to take some medicine, something like that. But from what you see in schools, how rare or how common is it for young people to be struggling with a health condition and. It sounds like LJ's is actually pretty extreme when it comes to how much does it impact your day to day life, and I sometimes think POTS doesn't get the credit it deserves, cuz it's not lethal. But in terms of really just impacting your every hour, your every day, your every meal, your every night's sleep, it seems to me that it kind of is a bigger deal than just the severity [00:27:25] Paula Johnson: LJ's situation is definitely more debilitating, it interrupts life a lot more than some of the other kids that I've met and how it impacts them. In my experience, I've been teaching for, over 20 years, I have to honestly say until it happened to my family. You don't recognize the struggles of children who have severely impactful impairments of some sort. You don't necessarily, as an educator understand the impact that it has on the whole family and how those individuals are struggling in their own way. How they have to make so many changes and adjustments and I'm in elementary school, so it's a different kind of social situation, but you know, It's much harder if your child's having a birthday party at a water park, but your child needs assistance or needs devices of some sort, or it's hard. Those kids miss out, not because they're not being asked, but because it's so hard for the family to make that happen. And so I do see that as a teacher. I will ask in conferences like, Oh, what about play dates? Oh my gosh, there's no time because we leave from school. We have to go to therapy, and then from that therapy we have to go to this doctor, and then we have to go here and we have to go there. And I get it now and I think it's typical that you don't know it until you really live with it. Like, we have a great dane. My dog is amazing. Love my dog, but it truly is like having a horse in the house. We knew he was gonna get ginormous. We knew he would be a little slobbery, but until you're actually living in it and experiencing it, you don't understand the impact. [00:29:22] Jill Brook: Mm-hmm. [00:29:22] Paula Johnson: So yes, I do see that in schools we've also had a really quick education in ableism. Especially initially before LJ felt really comfortable with the wheelchair, people just go right in front of you, because they know they can do it faster, and they're not trying to necessarily be rude. As a matter of fact, sometimes they even turn around and say sorry, or, Oh, I just wanna get past you really quickly. But it's heartbreaking to watch it. It's nearly impossible as a parent not to jump in and say, Hey, you're being a jerk. But I do because LJ has their own voice. And is trying to learn how to do that on their own and like, Hey, excuse me, I was here. And I hope that stays, I hope they don't get beat down over that. But I do know that the families, it's hard on them and it's hard when you wanna fix things for your kid or dare say, fix your kid. If there's a child having an issue in the classroom, parents can only do so much, right? They're not with their parents most of the day they're here. And so I definitely have developed more empathy with the parents of those little special eggs because a lot of it is outta their hands and they're, dealing with the same sadness and frustrations. Just feeling helpless. [00:30:50] Jill Brook: Do you have any advice for families who might be embarking on the same journey? [00:30:56] Paula Johnson: on a POTS journey? [00:30:59] Jill Brook: Mm-hmm. [00:30:59] Paula Johnson: I feel like we are still learning. It's easy to say, Oh, believe your kid. If your kid says they have these symptoms, believe them. But we also know kids are kids, right? And sometimes they're just full of bull and sometimes they really are making up that belly ache. So I think again, the biggest savior for us has been community. We don't have family that live near us, so we're kind of on our own. Except that it's the community and the sharing and the people who have reached out and said, Oh wait, I know someone who blah, blah, blah. So I guess advice would be talk talk to people, put your feelers out. Don't be afraid to reach out to somebody, even complete strangers on Facebook. You know, that's how I found you and found some humor, in all of it. We say it all the time, like, we laugh or we're gonna cry. And so that's kind of our mantra. Just keep talking, just keep asking, just keep inquiring. And it's tiring so get some sleep [00:32:07] Jill Brook: Yeah. [00:32:08] Paula Johnson: I don't have, so I dunno how you do that. [00:32:11] Jill Brook: Right, right. Easier said than done. Yeah. Is there anything else that you would want to share about any of this? Or is there anything that you would've wanted to know or hear two years ago or 18 months ago? [00:32:28] Paula Johnson: The other child that goes to LJ school that has this doesn't pass out to the extent that LJ does, but is often very lightheaded and nauseous and sometimes their whole body hurts. And her parents said to me I'm still learning. These are the things we found that work, these are the things that don't work. But that it has taken her kid a really long time to understand that she herself, the child herself, has some power within herself to make changes that will not cure it, but will help. And I think that's a big struggle for us because we know there are some lifestyle changes that LJ is just not yet ready to take on and to say, Okay, I'm tired of this. I'm tired of passing out . Like it's ruining everything. I'm tired of it, so I'm gonna eat better. I'm going to consistently sleep. all the things that as an adult perhaps, you know, and you do, even though it still sucks, but, As a 15 year old, You're not there yet. Your frontal lobe is not there yet. [00:33:45] Jill Brook: Right, right. [00:33:46] Paula Johnson: So I guess 18 months ago, I wish I knew sooner about that family that I was speaking of because they've been very helpful. if not for them, I don't think we'd be as far in our journey of what kind of things we need. [00:34:03] Jill Brook: I think that's be beautiful and I think there's gonna be a lot of people listening to this who feel like you have now done that for them. [00:34:12] Paula Johnson: I hope. It's so hard. , it's so hard. Like you said, you feel alone. You feel isolated. Even though those that love you and love your child are standing around you and offering help, unless it's someone who's going through it or has gone through it or lives with it you need those kind of people around you. And they're not always in the same neighborhood. We got lucky , we got lucky. And I often say that to that family, like not that I'm happy POTS is part of your world, but I, am very grateful that you are part of my world. [00:34:47] Jill Brook: Well, thank you so much, Paula, for sharing your story and your insights with us and for being so open about the process, cuz we can see how much work you've done and how it looks like you've done everything right, but that doesn't necessarily get you there or make it easy. [00:35:07] Paula Johnson: It doesn't fix it. [00:35:08] Jill Brook: So I know that everybody listening only wishes your family the best going forward. Thank you so much for speaking with us today, [00:35:17] Paula Johnson: Thank you, Jill. I really appreciate it. [00:35:19] Jill Brook: And hey listeners, we hope you got something out of 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.