The Dysunderstood Podcast

Transcript - Episode 1: Jackie

Welcome to the Dysunderstood podcast. I'm your host, Ella Eastin.

On today's episode, I had the pleasure of sitting down and speaking with Jackie, the first mom to share her story on the Dysunderstood platform and a wonderful contributor to the Dysunderstood community. Jackie is a stay at home mom living in Southern California, learning to navigate chronic illness with her husband and three kids.

She was diagnosed with Hypermobile Ehlers Danlos Syndrome in POTS a little over two years ago. If you haven't already, I would encourage you to take a listen or read her story on the blog,  Dysunderstood. com.  It is an incredibly powerful one that I myself Think about, um, in moments where I feel like I need a little more energy, um, to continue to persevere.

She has been really vulnerable with our community and all of the experiences that she has had in the healthcare system and also in her personal life. Particularly the part about her entering motherhood and bringing her children into the world is one that I continue to carry with me and one that we will hear a little bit about today.

So without further ado, here is my conversation with Jackie.  There you are.  Hi, it's great to see you. You look so professional.  I am actually in this little recording. Studio at the med school. So it worked out really nicely that I have access to their little setup, including my little green screen, so I could put the misunderstood behind.

So That's so cool. Yeah. Yeah. Um, well I'm really excited to catch up and see how  you're doing. Um, you mentioned that your brain fog has been a little bit of a challenge. Um. I'd love to hear about kind of how you're managing everything else.  Yeah, it's been, it's been  kind of weird. Like, I feel that things ebb and flow and I, I feel like I have a good handle on things and  like, okay, I can do this and, and things are going well.

And then something happens and it, It just throws me off and, um,  I feel like the brain fog really,  it's one of those things like,  for so long I didn't know what was going on and so I, I felt like I had to kind of hide it. Like if I, I mean I would trump my doctors, like I'm having trouble focusing, I'm, I'm losing my brain.

Like,  I don't know, like I'll be talking to someone and I'll like lose my train of thought and it's not in a kind of an ADHD sort of way, which, because I mean, that's something that I deal with too, but it was, it's a different kind of thing and so I find myself kind of like,  wanting to hide it because for so long I didn't know what was going on, um, and then  now that I know what's going on, I still have that pattern of like, not wanting to  really share about it or, and there's like this internalized pain and ableism.

And I've been just trying to unpack that and, and not do that. Because like I said, like I would never judge anyone else for  issues focusing or getting confused or, or anything like that. But for myself,  I do. So,  um, I feel like I, I took a break for a while from doctor's appointments and  I was just so burnt out.

So I was like, okay, I'm happy with where I'm at and I'll, I'm just going to be.

Um, but you know, it's, I feel like it's become worse again and now I'm like, okay, I need to find out  what's going on. So I have an appointment with a chronic fatigue clinic, um, actually at Stanford next  month. So hopefully we'll be able to get some answers. The neurologist at Stanford actually referred me to them because he was like, I think that's  It's causing like a large majority of your symptoms.

So  it's been interesting learning about that and pacing and, and all of that has been like really eye opening to me, especially for like past stuff and explaining a lot of past stuff and why things didn't work and why things worked.  Yeah. Do you mind, um, briefly just listing some of the conditions that you manage?

So the listeners that haven't, um, gotten the chance to listen to your story yet. Can can have a little bit of context. Sure. So I have, um, hypermobile Ehlers Danlos syndrome. And then that has caused like, I mean, they think they don't know. Um, but for me, at least like that has caused like a slew of other conditions.

So like, um, POTS,  um, mast cell activation syndrome.  Uh, what else?  Probably, they said, probably, maybe the ADHD might be related, they're not really sure. Um, and I'm like blanking on my, what conditions, because I had this asked and I'm like, wait, what do I even have? I mean, those are like the main conditions that impact my life day to day.

Um,  But, you know, just like chronic pain and, and stuff like that. There's more, but those are kind of the main, the main things. Yeah. And you shared your story with us so beautifully, so thank you again for your contributions to our platform. Um, but you were the, um, first mom to share your story with us. And I'd love to hear how  you have managed, um, in your role as a provider for other people, um, while you've also, you know, had to take care of yourself and, um, manage your health in addition to managing, um, You know, you're your Children and also navigating your relationship.

So there's you have so much wisdom to offer this community. So I'd love to hear, um How that has evolved over the years. Oh, you're so sweet. I don't feel like I have, like, any wisdom. I feel like I,  this one was tricky for me because you were so nice and you gave me a kind of, like, an idea of some of the questions in advance.

And I was thinking about this a lot and I'm just gonna be really honest. Like, I wish I had a better answer. I wish I had it figured out and I knew  how to do it. I feel like I just, Every day, I'm just like,  okay, we got through today, like, it's, I just have to take it like a day at a time, sometimes like an hour at a time,  um, and I, you know, I got diagnosed after having all three of my kids, so I didn't know  that I was sick, like, I mean, I knew that I had, they said you have, like, ophthalmic migraines, and you have, well, yeah, that's one of them, migraines, uh, like, chronic migraines, um,  Which has been better lately, thankfully.

Um, but yeah, so I knew I had some conditions, but I didn't know  that I was like basically disabled. I didn't know that I was chronically ill. I knew that I had to deal with some things, but. Um, so a lot of, a lot of my motherhood, like most of it, has just been pushing through and like, everyone feels like this, it's okay, like,  you're tired, you're a mom, or, you know, that was kind of what the doctors would tell me, like, oh yeah, you're tired, you're busy, whatever.

And I'm like, but I feel like lightheaded and confused and,  and all this stuff, and, and they just kind of wrote it off, like, oh yeah, that's normal, that's normal. And, um, so a lot of motherhood for me has just been pushing through and trying to, um, Um, just be like the best mom that I can be and do the most stuff and, and do the most activities and, and all this stuff.

And then finding out like  that I had these conditions, I felt so validated, like, oh my gosh, that's why it's been so hard. That's why I've been so exhausted and so much pain and  having all these symptoms. So now it's like  I'm trying to navigate  prioritizing my health, but also caring for my kids. And that's been really, really hard because.

I have to ask myself, like, okay, what's, where's the line between what the kids need and what I need in order to be able to, like, be there for the kids? Because if I, if I overdo it and I put myself in a major crash, I'm like,  It's not going to be very helpful to them, so it's like a constant balance, and my youngest is only five, so she doesn't really understand.

She's so sweet and gracious to me, and like, I'm so lucky that they somehow seem to understand on some level. Um,  but like, it's, it's really tricky. Um,  and  I think,  you know, carefully planning, planning out things and knowing like, okay, we have this.  thing tomorrow, like they went to vacation Bible school this week and like, I  basically dropped them off and then came home and laid in bed for like four hours until I went to pick them up because I would just was so exhausted from  getting them ready, driving them there and then standing in a line and that was like all I could do that day and it's just like,  there's still that sense of almost like embarrassment or shame or something, even though I would never, ever, ever judge.

I mean, I know people who are really severe that can't. Like, even, like, have a light on and I, of course, would never be like, oh, you can't even have a light on. Like, but it's like, when it's myself, I just feel this, like, that's crazy that that's all I can do. And I, it's, it's like, I,  I know that it's valid, but it's just so hard to accept.

And it's so hard to  explain to other people. And that's why I love the name that you chose for your platform, because it's like, that's been the hardest. It's one of the hardest things is just not being able to explain. Thanks to people and not being able to be understood and being understood is what gets you support  Oh, you said how to manage my role and then my house and my relationship and yeah, the relationship my husband's just so great and like understands and  he's It's just very supportive.

So I feel very fortunate to have that. So that's kind of, I don't have to worry, I mean, I'm always trying to, you know, work on, on being a good wife and things like that, but it's not like, Oh my gosh, what about Um, you know, he, he can, he really does pull like a lot of weight when I need it. And we try to like be there for each other and, and fill each other's gaps the best we can.

Yeah. And you've been together since before you received any diagnosis. So he's kind of been on this journey with you, um, you know, through the ups and the downs and. Yeah. Um,  is so wonderful that you feel like you have him to, to rely on through all of this.  Yeah. It really is. Yeah. He, I mean, we knew that I had like issues with stuff, but we didn't understand.

And I had like one of my biggest flares, which now I look back and I'm like, oh, that was like, I think that was a chronic fatigue or, I mean, it could have been POTS and the fatigue could have been from the POTS, but it was like,  unlike anything before, it was like just. I can't get off the couch. I'm so, there's something wrong.

Like we have to figure this out. Um, so, yeah, that, he, he never was like, Mm, are you sure? You're not crazy. Like, he was, he, not crazy, but like, he was like, He never questioned the reality. He always believed me. He's always,  um, always encouraged me. I never felt, like, judged by him or, Or criticized by him and that's been really, really huge.

Yeah, no, I'm, I'm really glad to hear that because I think,  um, you know, I hope that most people that are going through this have at least that one person to rely on that they can go to and express how they're feeling without, um, you know, being worried about the other person believing them or judging them for it.

Um, And that was also part of the reason that we created this was to let people know that they're, they're not alone going through this in case they don't have that person really close to them that is able to be kind of that, that shoulder to lean on when, when necessary. Um, and I would like to say to that, you know, you said you, you wish you had a better answer, but I think that Um, everything that you touched on, um,  was really a wonderful  kind of

explanation of a lot of people, um, that are experiencing this kind of go through, um, and it really evolves over time too, we're, we're constantly learning and our body's constantly changing, so we're having to always adjust and adapt and You know, your kids are growing too and, um, things are changing for them and so you're always having to make changes and adjustments and I think that makes it feel like we really don't have it all figured out because we're in a constant state of flux.

Um, but in, in all of our interactions, you've always been so thoughtful and reflective and I've always learned something and. Um, so I think that's, that's another reason why I was very excited to have you come and speak today. Because I, I think that you're right, we don't give ourselves enough credit, um, but when other people kind of listen, um, listen to us when we share our experiences, uh, they, they benefit greatly.

Um,  if you would be willing to talk about kind of your journey to motherhood, I think that. It would be really, really powerful for the listeners. Um, that's one of the major stories I carry with me every single day and just.  How people living with chronic illness can really push through, um, incredibly challenging and seemingly impossible things.

Um, so if you don't mind sharing that part of your story, I'd really appreciate it. Sure, can, do you mean like,  my journey to, like, wanting to become a mom, or like, actually, the pro, like, pregnancy, and, what kind of? Yeah,  so when you,  yeah, I know, um, I think more so the process of actually having your children, I think there are not a lot of people that understand kind of the,  The role that Ehlers Danlos plays, um,  like, in affecting a woman's body and their ability to, uh, safely and effectively carry a child, um, and you have lots of experience with that, so maybe just sharing briefly kind of,  you know, looking back once you got your diagnosis, you thought this all makes sense, but, but in a In the moment, you were, you were doing what you had to, um,  Yeah, okay, that's a really, really good question.

And I, I agree, like, I've tried to, I've tried to find other women who have some of these conditions, um, to try to, like,  glean from them, like, how did you do it? What, how are you  doing this? Um, and it's, it's, there's not a lot out there. I know they exist, but it, it's just, there's not a lot.  Um, yeah, I,  I mean, when I had my, well, first I had two miscarriages before my son.

Um, and,  I mean, this is, one of the issues is I don't have like an EDS specialist or someone that is very knowledgeable about it. Um, so a lot of the stuff that I know is just from medical literature or, Um, like conferences that I've listened to or things like that, but I know, um, like miscarriages are more common with women with EDS.

So I,  I had that happen. And then when I had my son, I just, I felt so terrible pregnant. I, um, and again, I only know my own body, so I don't know what it's like for. for women without chronic illness to be pregnant, but I felt like, okay, this is really bad. Like, I feel really nauseous. I'm really, like, so fatigued.

Like, more fatigued than I had ever been, even with, like, a severe flu or, or, like, a 104 fever. Just, like, the worst fatigue and, um, pregnancy was really hard, but I didn't really, like, talk about it because I thought, okay, this is, you know, it's hard and you see the movies and, um, the shows and the jokes and all that stuff, but,  Um,  I, and I, you know, was like a pretty healthy weight, and ate pretty healthy, and, and did the things, and exercised, and my blood pressure still continued to go up, and so they induced me, and, um, I went from like  0 to 6 centimeters in like 40 minutes.

with like a tiny bit of pitocin and they were like, what is this? Like, this is crazy. Um, but they didn't, they didn't like question it. They were just like, oh, that happens sometimes. But they seemed like  questioned, but they didn't, they didn't like dig into it. So that was one thing. Um, and then  just like breastfeeding was really challenging.

It hurt really bad. They couldn't figure out why, and then it turned out I was like, allergic to the, like, the pads, like the, the bleach pads. Um,  so, that was insightful with like other things, like there's bleach in everything. Um,  but so, weird stuff like that, like breastfeeding, I had like a lot of oversupply, a lot of pain, and I went to lactation consultants for like, I think six months.

And I just felt like, no one told me like, look, you can just give them  Like, it's okay. But I felt like this pressure. It was like, rest is best, whatever. And I'm just like, thinking, like, I don't, I don't want to be in pain all the time. And he nursed constantly, and,  like, my supply was, like, watery and weird, and so he wasn't staying full, but we didn't know why.

And now it's probably because of, like, the, the letdown or whatever. Sorry, this is too much. You can, you can edit stuff out of this, right? Yeah, no, I mean  Yes, if I ramble too much. No, you're not at all. This is all super helpful. Okay, I'm an open book. I don't care, but I don't, you know, some people want to let me know.

So, um, so anyway, so that was with him and, and everything was just kind of like, yeah, it's, this is like a fluke. It probably won't happen again, whatever, but it didn't seem like really bad. It was just kind of like  within reason where I was like, okay, I don't think there's anything crazy wrong with me. I think I just, I, you know, couldn't, we wanted to have more kids.

So then we had. Our second, um, child, so that was really, that was kind of different, that pregnancy where I didn't get the blood pressure, I didn't get, um, I don't think I felt, I still felt sick, but I was like used to Kind of the aches and pains and,  and all that, but my doctor was very knowledgeable about, um, preeclampsia and so she put me on, like, a bunch of supplements and she put me on, like, baby aspirin and I never developed high blood pressure with him.

Um, but I was induced because She saw my blood pressure like creeping, like it slowly was creeping and creeping and so she's like I really don't want to wait for you to end up with something so let's just do an adoption, you're due like tomorrow, let's induce you on your due date. So I went in and it turned out I was already in labor but I didn't know because I didn't  realize that.

I thought it would be like significant pain and it just felt like period cramps to me, which that, I should probably talk to my doctor about that, like if my period cramps are like labor level, like probably, but I just can't do another thing right now. So.  Um,  so he ended up having like major decelerations and they had to do an emergency c section.

Um,  his heart rate even like they, there was no heart rate for a while. They put in one of those little like,  uh, internal monitors in his head and they still couldn't find it. So I had a really traumatic, really traumatic birth with him. Um, I wasn't numb.  The epidural like wasn't. Working for like them cutting me so it was really  really bad and that was that's kind of like the main story that I have  When it comes to like crazy stuff with birth So the doctor like rushes in and is like we can't find his heartbeat We need to do an emergency c section.

And so they rushed me back and, um, they pinched me and they were like, you can't feel that right? And I was like, no, I can feel that. And the anesthesiologist was like, what do you even feel? And I was like, you're pinching me with sharp tweezers. And she was like, oh, okay, hold on, wait, she's not numb. And so I was like, no, just put me out.

I, like, we need to get him out. Like, I don't, I don't want him to have, um, complications from this. And so, they were like, no, look at his heart rate. It's kind of going up. It's okay, like, it's low, but it's, he has, like, eight minutes of oxygen. So, we can try to get you numb for, like, that amount of time. So, they're doing all this work.

They're messing with the epidural. They're pushing stuff and, and they just can't. Like, my skin just won't get numb. And I've had this issue with the dentist before where I had, like, a root canal and he had to do 12. Shots, and I just, I don't respond to lidocaine very,  um, or like a lot of nummy agents.  Um, and so  they were like, well, we don't want to put you out because if we do that,  he's already in distress.

He's already low in oxygen. If we do that and then we can't get him to breathe, like, we just don't want to go there. We it's safer if we try to get you numb so we can, um, do that. And so finally they were like, it's not working. I heard him like mumbling and they came over with like the gas and I just thought like  I have, like, I can't.

They have to get them out. Like, I can't do, like, they can't put me out. I can't risk this. So I just said, like, I'm, I'm numb. It's, it's, it's working. Wait, hold on. Like, I did like my best acne. And I was like, oh my gosh, wait. And so they were like, are you sure? And they pinched me like so hard, like probably broke the skin.

And I was just like, oh yeah, I can't feel that.  And, so, they, like, cut me open and I could feel, like, every layer, like, I, I didn't realize how you have, like, all these layers till after that and I could feel, like, I remember thinking, like, oh, that's the skin, that's the fat, that's, like, I could feel it and, you know, of course, I was screaming and they We're like, wait, are you okay?

Can you feel that? And I was like, no, I'm just really scared. And so, I,  you know, I feel bad for, like, lying, but I also don't feel bad. Like, I needed them to get him out. And I, um,  I don't regret it, because I always would have wondered, like,  you know, if anything ever happens to him later in the future, I would be like, wait, is that because of this?

Or, so I know, I mean, I wouldn't recommend this. I would say, if I was telling anyone else, I'd be like, the likelihood, like, just let them put you to sleep. But, like, I just.  I just made like a,  like a,  a very like quick judgment call at the time, and so, um, they got him out, and then as soon as they got him out, I was like, I lied, I'm sorry, I, I feel everything, like,  you know, and then the, the anesthesiologist, who was like very mild mannered, was like, oh, S word and like she was like freaking out and I heard them like yelling and like morphine and whatever and then I just remember like that was, I don't remember anything after that.

I went like to sleep. Um, so that was like super traumatic and I didn't realize that I had so much trauma until Like, years later, um,  my, one of my family members  is a, like, a neuropsychologist, and,  uh, we were talking, and she was like, I think you might have, like, PTSD. Like, this seems, you know, because I was having, like, flashbacks and all this.

It just, I was never the same after that. Um, and so, I didn't realize until six years postpartum, though. Like, I didn't know about, I thought that was only for soldiers, and like,  You know, sexual assault victims and things like that. I didn't know about, like, PTSD from medical trauma, so  that, you know, getting treatment for that, getting help for that was huge.

Like, I don't  I don't think I have PTSD anymore. It was like, it, it was very fixable for me because it was like that one event, um,  but it was just,  it was just really traumatic. So, um, and then with my daughter, she, I ended up having postpartum preeclampsia with her after the fact, and I didn't know because I didn't know until the third day because they said, Keep an eye out, like you'll have the worst headache of your life, like the, you know, you'll know, like it's the kind of headache you'll know, and I just felt like these are just like,  not even as bad as my normal migraines, so I didn't,  I didn't know, so,  um, and she was born very rapidly also, like all of them,  I mean I went to 8 centimeters with my middle son, um, but they still had to do the c section, but like every, all of my kids were like super rapid, Um, births probably due to the EDS.

So.  Wow.  Yeah.  Well, thank you so much for, for sharing that. Um,  I think you have spoken before about. The amount of pain that you have lived with for so many years and how  it really changed your perspective about what you were,  you know, supposed to be able to handle and what things should feel like and, um,  that is just, uh, an amazing testament to,  um, how much you have gone through and I think that there is more now, luckily, about  the discussion of PTSD in the medical setting and Um,  As you mentioned, it's, it's very possible for people to have experiences that, um, are traumatizing to them and, um,  I think that that story is definitely  an example of,  you know,  a mix of amazing strength on your end, but then also a disservice of the medical field to everybody living with conditions that can be written off.

Um, But I appreciate you opening up about that, and I know that the listeners will, will take something away from hearing that story from you.  Oh, thank you. Yeah, it would have been really helpful to know that I had EDS. Like I, I know there are a lot of things that can be modified and changed, and it doesn't have to be, like, pregnancy doesn't have to be this terrible experience.

You have these conditions, um, you know, I think it would be harder, but it doesn't have to be, like, at that point. At that level, you know? Yeah, yeah.  And I think that hearing  I think that story is also helpful for people that do have EDS and may not know that that's a complication, especially if they're diagnosed at a really young age and it's not something that's talked about with them yet.

Um, you know, we have a culture of keeping some of those discussions off the table, um, with certain age groups, but I think that, you know, understanding like, like you said, Oh, I shouldn't be in that much pain every time I have my period. It's also important for a 13 year old to know just as important as it is for a 33 year old to know.

Yeah. So, it's true.  So true.  Yeah.  So do you have a history of EDS in your family or did anyone else know, um, or get diagnosed once you found out that you do?  No, that's what's really weird. And one of the, um, that was one of the questions I asked when I said, you know, or when they diagnosed me, I was like, but wait, I don't have.

Family, um, history of this and no one in my, like, I'm the only flexible person in my family and there's no, like, other  people with  anywhere near kind of stuff that I have, but the doctor said basically you can be a de novo mutation, so you can have, like, a new, you can be the mutation, like, it has to start, like, the, I was the change, you know,  you can be the change.

The change you don't want to see in the world. I don't want to see it. Exactly.  So.  I was uncoordinated. That changed. So, yeah, there was no, um, they, I am getting evaluated,  um, based, based off some of my kids, um, like health stuff. We ended up having to talk to genetics for something and, and the counselor was like, I think we should do a connective tissue panel on you just to make sure.

It's not another type of EDS because there were people in my family where there was like weird stuff, like my grandmother had a lot of the same  stuff as me when it came to like skin fragility and, um, I mean, looking back, I think she had some form of dysautonomia. She  had, we had like a lot of the same symptoms.

And I didn't find this out until I started asking questions once I was diagnosed. So it's not like I knew, about any of this. So I say no, like there wasn't a history, but I also wonder is there some other  type of EDS or something going on? Yeah. And also are, are people having these experiences like you were and thinking, oh, this is how everybody else is living.

And so then you don't think it's anything remarkable. Well, yeah, exactly. And that's why when I reached out to  like more extended family members, like cousins, they were all like, no, no, no, I don't have anything. And then. And then I was like, well, okay, are any of you hypermobile, you know, like I asked specific, you know, things like that and my cousin was like, well, yeah, but it's just my hands are like, it doesn't bother me like he didn't.

I don't think he really wanted to go there because he was fine. And I, you know, that's fair. Like, so. It's,  but hypermobility, like one in ten people have that. So it's not like something I could be like, well, listen, you gotta really look into this or, you know, so,  yeah, I really wonder about that and I think about, I kind of think about things like that.

And you're talking people before me, right? You're not talking like my own kids. Yeah, yeah, because my kids there are signs, but we don't know yet and it's  no one will really no one wants to like touch it They're just like they're too young like let's wait. So  yeah. Yeah, and I think that  There is some  Difficulties and and knowing too much  So how do you navigate that with, with your kids, and have you had discussions about this with them?

Um, about, you know,  do they have symptoms? Are these conversations that you do need to have? What does that look like?  So,  I mean, we've talked about, we've talked about it to, so only two of my kids have possible symptoms of like, they're hypermobile. One of them is not, Um, and  basically,  I don't think my kids really want to go there, like I don't.

And it's hard because I, this is the kind of stuff that I'm like, okay, how do I navigate this? I don't want to like,  put something on them that they're not already concerned about, but then I also don't want to pretend like it doesn't exist and like, oh yeah, my mom, I don't want them to think like, oh yeah, my mom just never talked, we didn't talk about it.

So it's like, I do talk to them about it, but I don't,  I struggle to know like, what's the right amount? So, you know.  I remember telling them, I don't remember if I told them on my own or if one of them asked, but either one of them asked or I told them right away, like, this is, you know, it is genetic, like, there is a 50 percent chance, um, And right now, like, you don't meet the criteria, uh, because you, it's not just hypermobility, you have to have, like, all these other things.

And, um, you know, I was like, I, you know, right now, the doctors say you don't meet the criteria and, um, it's, it's possible. I'm really sorry, like, this is, it's okay if you're scared or if you want to talk about it, I'm here and, you know, this is something that,  you know, it's important that we talk about and, um,  And this is to my, to my older son.

Like, he's old enough to understand this. My five year old, she's kind of like,  I don't think she really  understands it yet. I told her a little bit, but I don't even remember how I,  I just kind of came out, okay. That was really lucky that it came out that way. And I don't remember how I  was able to do it, but it somehow worked.

But yeah, I mean, we've talked about it. Um, and, yeah.  It's something where I'm like, you know, like, for example, my, my oldest son, he has POTS too, um, and for me, like, the POTS has been, like, the POTS, the dysautonomic fatigue, that stuff has been the most challenging for me. I know some people with EDS, it's a lot of, like, dislocations and surgeries and things, but for me, it's been, yeah, pain has been there, but the most disabling thing that I felt like, okay, I can't push through this has been,  The secondary condition.

So because he has already a secondary condition, I think he's less afraid of like, well, what if it's, what if I had the EDS too? So it's kind of fortunate in a weird way that like POTS came first, maybe in case he does. Um,  so yeah, it's, it's, it's been tricky and um,  my, my daughter was only like three when I was diagnosed, so.

And how did your son get diagnosed? I know you briefly touched on this in your story.  Yeah, so he,  he, um,  was having, like, a lot of symptoms where he was like,  I feel weird, or, so here's the thing, I try to not talk about my symptoms too much with my kids. I, I kind of keep it a little vague where I'm like,  You know, mommy needs to rest or mommy's not feeling good right now.

I try to not like over and it's like when you said like how do you deal with knowing too much? Like I don't want to put that on them and I don't want them to question every little sensation in their body But I also want them to be aware  Uh, what's not normal. So it's a hard balance to strike. And he was, he was saying things like, Oh, I feel so weird, like, my heart's pounding, my, like, it's, you know, I feel, like, dizzy and I don't know what's going on with me.

Those kind of things. And so I was like, Oh, that doesn't sound, like, comfortable. I'm sorry. And so at first I was kind of like, I'm not gonna just, like, randomly check his heart rate and, like, be paranoid and whatever. Cause it's not an, it's,  It's not from what I've been told like dangerous. It's it's just very I mean other than like fainting and things.

Yeah  So I was okay kind of waiting and seeing like it's just not feeling well after a virus and like his heart rates more sped Up or something like that. And so it kind of kept going on for that week. And so I checked his heart rate, and it was high, and it's like, he's like, Oh no, is, could this be POTS?

You know, he asked me, and I was like, It might be, let's, like, check. So, um, I did basically, like, a poor man's tilt table test. It's like what the cardiologists call it, right? So, had him lay down, I checked his heart rate after, like, five minutes.  Checked it standing up, and there was a change, enough for it to be.

POTS, because I didn't want to take him to the doctor and freak him out and then have the doctor be like, Oh, no, it's not POTS.  Also, I didn't, I didn't really expect that the doctor would be super knowledgeable about it, just based off of my history and like what I've experienced.  The training's just not, it doesn't seem like it's really talked about as much.

So we took him and  Uh, initially it was kind of like,  she didn't want to say, like, I don't know what this, what POTS is. Like, she was kind of familiar, but she didn't know, like, the criteria. She didn't know  how to check for it. Um, I think she thought orthostatic vitals were sufficient, but they're not, right?

Because you have to be laying for a while, and you have to stand immediately. You don't get that break of, like, the in between sitting and then standing. So, I had to, like,  without sounding like, look, this is what it is, fine. I'm telling you how to do your job. I had to be, like You know,  say it in a very  non authoritative way and kind of explain why I thought it might be POTS.

Um, and then she was open and said like, Oh, I need to go see another patient. But like, she was in her office, like, looking up stuff, like, trying to figure out, like, what is this? And so she agreed to send him. She said, Yeah, it does look like It does look like POTS, it does meet the criteria, but I want to make sure it's nothing else like a heart condition or anything like that.

So she sent them to Pediatric Cardiology and they were able to just tell based off of like the vitals they took, um,  that it was POTS. So  It was, it was very like easy. It was very,  um,  it wasn't like a huge event. It wasn't like a big anxiety inducing experience and there wasn't like this pushback and this wrestling and this fighting and, um, I think that really helped him to kind of accept it,  um,  with, with less distress than he would have if he would have had to like push for, answers or not like what's wrong with me?

What's going on? I mean, for me, it was so different. So I feel like I was  fortunate enough to  have the condition that he ended up having that we were able to figure it out.  Right away.  Yeah. So knowledge is power and a lot of exactly what, um. And I think,  you know, that's why you and so many others are so willing to open up about their experiences because if, you know, you can pass on your message to one other person and give them, um, a clue that can help improve their experiences, it's, it's so worth it.

So, yeah. Thank you for sharing all of that. Oh yeah, of course. So, I would love to know, um,  Um, a couple of your  symptom management tools, um, everyone's kind of different with what works best for them, um, and obviously with,  in other, um, dysautonomia conditions, we have the, you know, drink your water, make sure you're having enough salt, those kinds of things.

But do you mind touching on a couple of, um, tools that you've either created or have discovered really work for you? Um, and kind of pass those on in case the listeners are looking for more ideas. Oh yeah, of course. Um, so for me, I don't know why, but like the salt and the water doesn't make, the water matters.

But the salt, I haven't found massive  difference. I mean, if I don't have any salt, it definitely, I could feel it, but it's not like the more salt, the better. Um, but my, they think mine's more of like a hyperadrenergic type of POTS. It's, they said it's mixed, but like that, because that's a factor, it's like more of the blood pressure stuff.

So I was told for a long time to avoid salt because I was having high blood pressure. So finding out like that salt matters has been really important, but it's not like a,  I don't get the same kind of, um,  results that I, that I see other people get that I wish I.  Um, just off,  because I forgot my, one of, um, my siblings recently,  it seems that she has POTS.

Her doctor thinks that she has it. So it's interesting because she doesn't have EDS, but it's like, what's, it's, it's very interesting. Um,  but that's a whole other thing. I hope she doesn't mind that I should,  um, she's not listening to this.  Um, I think it'll be fine. Yeah. I, um, but yeah, so for me, pacing has been huge and this is only something I learned about like a few months ago.

So  pacing activities, not overdoing, it's more of like what not to do for me, I guess, like what to avoid, like overdoing it. Um, that's been  not helpful at all. Heat, like being in the heat, being overheated. Um, resting is. It's weirdly very helpful for the POTS, especially laying down. I guess it's not weird, but it's like almost like a reset.

Like if I have a busy day where I have a lot of things to do, if I can find times to just lay flat for a while, that really helps me and I didn't know about that because my cardiologist told me to put like my feet up on the wall and like let the blood kind of slow back down and that helps, but it's not the same as just laying flat,  um, for whatever reason.

And then finding the right medication, that was something that I felt very discouraged with at first because I didn't have this  revolutionary change in symptoms beyond a certain point. Like the beta blocker really helped,  um, it helped so much with the, the feeling of that, like that fight or flight feeling and like the heart rate and all of that.

But I still had So much orthostatic intolerance despite having more control over the heart rate. So  I felt like, well, what am I going to do? Like I've tried, you know, three things and they've not really helped beyond that. But finding, being willing to try like the weird medication that like  only 1 percent of people try, like that kind of stuff.

Um,  and just not giving up, and reminding myself, like, there, there is more to try, there are more things I can do, this isn't,  this isn't the end, um, that's helped me to kind of keep pushing, keep,  keep going, also IV fluid really helps, but there's like a limit to how much.  We can do with that without wanting to get a port and all that.

So, um,  it's, I think it's just been like a complete,  like a lot of different things. A little bit of a lot of different things and weirdly avoiding, for me, exercise has been like the worst thing. And that's what made the  neurologist think, okay, maybe there's like a chronic fatigue. Because it's like any exercise, it's like an immediate.

Like, it makes everything worse. Um, which is hard because exercise is important for POTS. But, like, the two conditions have, like, the exact opposite treatment. So, it's, I'm trying to find what's, like, where the balance is. You know? Yeah. I know. I kind of say it's a sick joke that those co occur so commonly because they're fighting each other for the glory.

And it's like, which one is, which one do I want to experience less of? Like, what is worse?  Yeah. And you have to kind of  find that balance or, I mean, for me right now, it's like not, I, I've even doing like one set of 10, I'll notice like the next day, it's just, it's the exertion. It's something  about that.

It's just so weird, but it's, it impacts things.  Yeah.  It is, um, complicated to manage all of this to on your own. Um, do you have a  primary physician that you  feel like you can go to with all of this or are you kind of managing with a myriad of providers that have different expertise.  So,  I don't want to like rag on my doctors.

Like I love my doctors, but like no one really has an expertise in this. Like it's been um,  it's been  like the doctor that diagnosed me they know how to like diagnose and They understand like the pain component, but it wasn't like,  like she, I was like, well, what are all these other symptoms then? Cause she just had diagnosed with EDS and I'm like, what is this?

Like, why is my heart doing this? Why, you know, why am I 160 brushing my teeth? What, why do I feel like this standing? What is this? And she was just like, I don't know. Like you have to develop your primary and like do as much research as you can. And then that night, like it was so clear. It was like, oh, POTS, like something like 70 percent of people with EDS have it.

So it's like. And so many people without EDS have it. And so it's just, um, finding that out, you know, getting a cardiologist. And then he was like, well, I, I've treated this. I've only treated like 12 people with it. So after a year of working with him, he referred me to Stanford and that's been, that's the expertise.

Like that's, that was like an amazing experience seeing how knowledgeable these doctors are. They know everything there. It's that's been huge, but that was only a couple months ago So finally finding like an expert for something has been I feel like we're finally on that Like on the right track and I feel hopeful like okay at least I can  at least I had more things that I could try and um more things that I can do.

And my primary, I actually spoke to him yesterday, and it seemed that we had like a major  misunderstanding with each other in that he thought I was getting care from an quote, EDS specialist, who was the doctor that diagnosed me. And you know, the doctor diagnosed me, told me to talk to my primary about all this stuff.

So  I,  I don't know, I never told him that she, cause I mean, I told him, I don't think she really knows.  You know, about, um, like, coexisting conditions and, and different things like that, but he thought that that was, like, under control, and again, I just remember, I, like, yesterday, I was like, oh, I didn't  advocate enough, like, I didn't push enough, I didn't, because I'm so used to being told, like, nothing's wrong with you, it's anxiety, go home, like, Deep breathing, whatever.

And so I, it's like that  muscle memory of like, oh, yeah, I'm believed now. Like I have stuff on my chart. They're, they're breathing, you know, so it's been such a mix of different things. Like learning  how to, how to like use the system to get your needs met and, and what doctors to see and, and then a lot of the time, you know, the other doctors, they kind of are just like, no, that's not,  like I had one doctor who was like, No, EDS doesn't even cause POTS.

And I was like,  I don't  have time to find a different  specialist for this, but, um, it was like a neurologist too. And so, yeah, it's just, I don't know if that answered that question. Yeah. I think there is so much work to do in this area, um, scientifically and, um,  I think something that I am very passionate about is.

Um, talking about the delay in medical education too, because even if we are discovering a lot of,  you know, the statistics of co occurring conditions, um, whether that is discussed in medical school and whether the co occurring conditions are discussed in medical school is, is a whole different story.  Um, you know, the silver lining of the pandemic has been, you know, these post viral conditions are getting a little bit of the limelight in terms of research funding, and hopefully we're turning the corner with some better understanding of,  of all of this, and it, you know, the momentum continues.

We  have so much work to do.  It's really interesting to be kind of in this middle ground where people may have heard of what you're managing, but they're still not,  um, to the point where they're comfortable treating you with it. Exactly. Yeah. So, and I am really, really glad that you feel, um, believed and validated, because I think that's like a huge first step, but I think it is funny how it's easy to revert to like,  The muscle memory, like you said, of like, Oh, okay, after appointment, I just like, try to find someone else, because I figured that.

You know, I didn't get anywhere with the last one. Um,  such a,  such a, a challenging thing to navigate. Yeah, it's like, it's, it's, I mean, I told him, but I, I didn't, like, remind him, like, remember, I, you're the person that's managing this, like, this is, like, I really need you. Like, it was, I didn't make, like, it clear that I was, like, without help, basically, and I didn't realize that that,  like, I thought that that, he would know that, because he's my primary, but it makes sense, because he thinks, oh, the person that diagnosed her, they're managing this, so, and I, I mean, I get it, too, it's like, They have, doctors have so little time with each patient, they don't get time to research, they don't get time for in basket.

They're told these things are so rare, like when you hear, like, I, my father in law's a doctor, and I remember mentioning certain things to him, and I, I said one time, like, I mentioned some rare thing. And he was like, well, they taught us in medical school, like, when you hear hoofbeats, think horses, not zebras, because common things happen commonly, and so they're taught that, and it's so true, like, you don't want to just diagnose every sinus infection as like, oh, it's a brain tumor, but like, there's also that, there are those rare conditions, and, and, um,  it's,  it was, I mean, it wasn't about my EDS or any of my stuff, it was just about something randomly, but I remember thinking, like, oh, that's interesting.

Because you can't just go into these deep dives every time anyone has anything, or else, I mean, they just don't have the time. So, unfortunately, things are missed, and,  um, you know, I mean, I remember hearing a lot of people, or, like, one of my relatives had, like, a post viral illness. Um, and she was kind of told, like, eh, if it's going on beyond this time, it isn't, it's not really, it's kind of, like, it's probably psychological, or it's probably, you know, it's not a real thing, or whatever, and, um, Um,  it was real, but it wasn't,  it wasn't like accepted widely like it is now, like post viral stuff is now.

Yeah. Yeah.  And I love that the symbol for ADS is, is a zebra and the  number of people in the population that are living with it is much, much greater than we have previously given credit for. Um, and I think a lot of that has to do with the fact that. Um, it is mostly women who are affected by the condition, um, like all of these other conditions.

So, it's, um,  I think that's also reflected in the fact that the majority of people that subscribe to the community and the platform are women, and they're, they're looking for that support that they've needed for all of these years. Yeah, exactly.  Is there anything that you would share with, um, listeners who are either undiagnosed or newly diagnosed?

Anything that you  wish that you maybe would have told yourself, you know, long ago? Absolutely, yeah. Um, so for the undiagnosed, that,  I would say, don't stop looking. Like, don't give up. Don't quit.  You can take breaks. It's hard. I know it's hard and you can't  keep, you can't just keep pushing forever. You have limited energy and limited,  you know, it's.

It's so hard to, to be, I hate that the term gaslit is thrown around so much, thrown around so much, but it does feel like that when you're getting told, like, everything is anxiety. Like, well, how is everything anxiety? And, um, you know, it's really, really discouraging to have a doctor. And then they document it, right?

They put them on your chart, and a little anxiety. And then, so it's like, the more you go, the more it's documented. But it's like, I wish I wouldn't have, I wish I would have kept pushing, and I, I really did stop for a while, like I, until I met my husband, I was just like, well, you know, I guess I just have anxiety, and this is just my life, and I, I can't, like, it really affected my self esteem, I felt like I, I just can't do life like other people, I guess, like, everyone else is,  is in pain, I guess, living, and exhausted, and whatever, and they're doing life, so why can't I, and so, I would say trust your,  trust your gut.

If you feel like something isn't right, it's not. Don't, like, don't quit. Keep pushing. Take breaks, though, but advocate for yourself. Because  what's the, the worst thing that could happen is like what happened to me, where my chart got all marked up with anxiety and all whatever, and then eventually we found it.

Like, the doctor found it. And then we found other conditions after, and it was just that one breakthrough that I needed. I just needed that one diagnosis, that one doctor who immediately, she, I told her my story and she was like, Mm, are you flexible? Like, I was on the phone with her. She hadn't even done, like, a physical exam yet.

And she did, of course, later. But, like, she, that immediately was her, like, Oh, and so she did all of, like, the tests and, I call them like the gang signs, like all the EDS gangs. But like, it, it's, it, it, just that one person and she was knowledgeable because of medical school. Like, she had a, uh, her mentor  or something, like,  taught her about it and was like, this is more common than we think and, um, or she said it was more common, but I don't know the whole story with that.

But anyway, she, it was just that one person, so just don't give up and believe your experience.  Um,  I wish I would have believed myself. I wish I would have not written things off and, um,  I would have a lot of, I've done a lot, like I did gymnastics as a kid, like there's a lot of damage that's irreversible that I can't get back.

So,  um, so it was for the undiagnosed and then for like newly diagnosed, right?  Like, I would say, the thing I would want to know for some of the things being newly diagnosed would be,  Um,  you're gonna be okay, like it's, it seems like your life is totally over and  um,  I mean I shouldn't say you're gonna be okay because I know some people they really are,  when I say okay I don't mean like you won't be, have a disability or you won't struggle but I mean you'll find, you'll find ways to navigate it and it doesn't mean that it's okay and it doesn't mean that  You'll just be fine having a chronic illness and, I mean, I, I've accepted it, but I haven't accepted it.

Like I still feel like, no, there's got to be more, like I have to be able, they, I have to, there has to be more improvement, there has to be. And if I hadn't had that, had that idea, I don't think I would have pushed for certain medications that were like breakthroughs or certain, um, pieces of knowledge, like the exercise thing.

Like I was all, all I could do all day was exercise. That would be it. And I couldn't do anything else. If I would have known. Like, it took me a while to find these things out from, from knowledgeable clinicians. So  you'll be able to navigate it and it just some, a lot of it just takes time. Like it's,  it's, it's a process and like you find.

I would say something someone told me that was really helpful was they said, well, just know there's probably more like, and it sounds bad, but it's like there's, if you, if you have Ehlers Danlos syndrome, there's probably more, um,  that's going on besides the EDS and that's scary, but it's also, oh, because you know there are things that you can treat, there are things that you can do.

I mean, and if it's not EDS  and it's, you know, like chronic fatigue syndrome or. pots or other things like you'll there are things that you can learn and there there's hope and there's I mean like one of the medications was  my cardiologist who's like the chief of cardiology like my service area Didn't know about like one of the medications.

So it's it's There's a lot out there and there's hope and there's a lot more knowledge and we're learning a lot very very quickly  too, so it's It's like, we're in the dark ages kind of, but we also are learning. It's a weird spot to be in. Yeah, yeah. And one of the physicians that I've spoken with that works with this population, um, he said that, you know, his motivation for continuing in this space that for so many years, I mean decades, had no hope in the form of medical treatment to provide to these patients, he's like, I've seen things evolve, and the reason I am so motivated is because I know that, you know, we don't know what's around the corner, and what's around the corner could really, really improve people's quality of life, and so that persistence that you mentioned, I completely agree that it's kind of the most It's a really important thing and giving yourself the space to take a break from, you know, pushing through every single day is also really important.

You know, you don't, you don't train for a marathon by running a marathon 10 days in a row. You take time off and Our bodies and our, our brains and our emotions also need that break.  I truly appreciate everything that you have shared with us and, um,  I know that so many people benefit from listening to your story and hearing all of the wisdom that you've accumulated from your experiences and I hope that you'll continue to find the answers that you are looking for.

Um, I hope that science is able to provide so many of us answers that we're looking for. Um, and I appreciate you, you know, opening up and providing. A source of strength and hope to, to everyone listening. So thank you so much, Jackie.  Thank you so much. It's been so great talking with you. Take care.  Thanks for listening, and you can find All Things Dysunderstood at dysunderstood.com or at Dysunderstood on Instagram and TikTok. See you next time.