46: GLC 2026 After Thoughts

Hacking Hypermobility: How are you? Are you mentally recovered from all the travel and stuff? I don't I don't know that I'm really rested or mentally recovered intellectually from all the information or the like fallout from the trip. remember when Evie was being a brat where I thought she was being a brat? Yeah, was she just in terrible pain? Yeah, so like we were going through the airport and like she Couldn't carry her backpack and so I was trying to figure that yeah. Yeah. I thought she was just like, you know. being dramatic and like I was irritated with her because I was physically it was yeah my all of my boundaries of what I could tolerate too and you know days and days of migraine and pain and stuff. And so I kinda thought she was just, you know, exaggerating how bad she was because of the same problems, you know? Right. And she was a kid, so was like, okay, fine. Guess this is what we're dealing with. And then you know, we get home and her shoulders are like wonky, like one side's sticking out more, the scapula, the shoulder blades, one side is like out more than the other. She always has kind of scapular problems and she's always had to work on her shoulders and stuff. Unrelatable. Yeah. but it was just not very it was off. And so I was like, okay, well just, you know, let's wait for the inflammation to go down. These ice and heat. And Yeah, it's probably just irritated from all of the repetitive motives. Do your P yeah, do your exercises, do your PT, but be gentle. And like I gave it a few days and it wasn't really helping. And she's like, Mom, I think my collarbone's out I was like, never had your collarbone come out. Like let me I'm feeling it and it just feels like one side feels really different, like the whole like articulation all the way into shoulder. And that could have been like that happens to me and it could have been just muscle tension pulling. Yeah, and that's why I was like, is it just because it's so like and it was like you could feel all the so tight the muscle tension all through all the way up her traps down into her all those muscles over the scapula and stuff. And so like I kind of put it off for a few days. I was like, you know, I'm not going to take her into the ER because they never they just make things worse. Yeah. And so I tried calling her. So her PT that she'd had a lot of success with at the clinic that was just for like disabled kids that we'd gone to like all school year, she transferred out of that clinic, which is near where she goes to school and up to Vanderbilt, which is where Evie had gone before, but she didn't like driving up there because it makes her car sick. And then she can't do PT. Right. But she did like it there. It was just not productive. So she was, you know, sad about that. But Shelby had said, like, hey, you're doing good. Like, I'm gonna graduate you from this round of PT anyhow, take the summer off. And then if you have issues, then you'll just have to address it when it comes up. Just keep up with your, you know, your regimen and doing This these are the things you need to do all the time. And then over the summer, with all of her pots chaos, she wasn't able to do as much physically. You know, she had been walking, she had been lifting weights, she had been very physically active until the pots spiral. So I think she lost some strength. And so then when she had to carry that backpack, I think it just was you know, she is just so wonky and her this her neck and shoulders are so hypermobile. I think it really did just pull it out. Yeah. And So we we called I called Vanderbilt to try to see Shel Shelby because Evie was like I just want to see her. I mean yeah she's on maternity leave. no. So good for her. Congratulations, but also. Yeah. So I asked to see somebody else that is good with hypermobility. We saw her, she's nowhere near as trained or experienced with that sort of stuff. But she Ivy liked her a lot and she was, you know, had a good vibe. Which matters a lot a lot, like, you know, how they respond or handle. Yeah. Gotta build a rapport. Yeah. So, she helped her a lot. Like she left in in less pain. She's like, Yeah, her collarbone was out. It was dislocated. My sister's collarbone was broken for two days before my mom when she was two before my mom took her to the ER. And so So it wasn't broken. Right. But I'm saying that area, it's hard. Well, and there's an age difference too, but that I please don't beat yourself up. I feel like you're getting ready to say I feel guilty. I Well, I do. I feel so bad 'cause I was so hard on her and so mad at her. And like it brought up all that stuff like with our own moms. Yeah. All the times like she didn't believe me. Yeah. And then it brought up all the stuff where like I swear my kid is worse than me. So it's like, and you know, like I'll I don't ask her to do a lot of chores, for example. Like she has one chore and right now the kitchen is full of dishes because she hasn't been able to do it. But then I let her go to the movies with her friend for her friend's birthday. And I'm like, I feel like I should be harder on her. But then also like I want her to enjoy the parts of life that she can enjoy. I don't know, it's just like such a hard thing to navigate. I get that. Are there any chores? Is there anything she can do around that? She could start with her rim. Yeah, I was just saying, like, if like I dishes are hard for me because of lifting and then down, like there's there's a lot of and there's a lot of thought process I have to put into it. And if I'm in pain, like I just can't even I haven't physically done dishes myself. Yeah, and I tried doing having her doing like vacuuming and dusting, she can't do that. Yeah. I tried having her do laundry and forget it. What about parts of ta is there any of those tasks that can be chunked up like you just do the folding? Or is she just a like not like I love folding, wrapping things like Yeah. Try to solve a problem you didn't even ask me to solve. I'm sorry. I just need to make more money to have a housekeeper. that's the rough, right? There's we need a village. We need a village. And she just really is that sick so much lately. And then she saw cardiology. They did another echo. There's no changes in that. and he was like, You were right, it's definitely hypergenergic pots, and we talked more about what that's gonna look like. And he warned us. The next few years are just gonna be really hard, but it's very chaotic. And I'm like, yeah, I lived it. Pretty sure that's what was wrong with me through my college years. I everything once I had my meeting with so I had an appointment with Erica last week. My POTS doctor chat about stuff. Told her about what they said at the conference. Well, the tilt table testing. She's like, Thank God, all of you. We hate those things. I don't know why we still do them here. Like 'cause the people that operated that test, I don't even think they're necessarily attached to the clinic that Erica works out of, which is who treats me for my POTS. Like they've so related to Yeah. It's so I I always get so confused up there. Like even when we were back up there seeing I really feel like it can be clinically diagnosed based on symptoms. Right. Like like You could say something to me and like I think about it and then my heart rate jumps like sixty beats and like who's that like not even like the whole nervous system dysfunction, like the lack of sweating, the so it's like temperature non control, it's GI non control. It's like all the the sense of anxiety. It's like but all of it can be chalked up to like functional problems, psychological problems. Right. Anyhow. But So I was telling Erica about my response and she's like, you know, given everything you described and your reaction on that test, I'm surprised they said inconclusive and didn't say hyper because That response you gave of just being even more it just kept going up and up and up. Like you didn't crash out like we would expect passing out like we'd expect that. You didn't tamp down, you weren't gonna tamp down until your heart was like and well, so they're only that I guess the really only way to be conclusively tested for hypergenetic POTS is that like the research that they did to study it was they're pulling live hormone draws blood draws as they're testing you that's not practical that sounds like we can't be you know what I mean that's not practical clinical application that's fine for research to understand the mechanisms behind it but we we can't be doing that to to just test patients so I couldn't even imagine what that would look like. Right. So but to just it's can it's crazy and expensive. So, like I'm glad that they did that because now we have the clinical knowledge and research to know what's happening. But you can see it in symptoms. Like particularly if you treat with traditional POTS medications and you bottom out, like what Evelyn went through, or you have a swing into high blood pressures. because your body's overcorrecting. Right. Or you have I mean the telltale sign for me, for her, was the pupil dilation. and the and the high blood pressure. So and then also, you know, she's had this mis mystery symptom for for years. And I get it too. And I I just thought it was like part of a sleep problem. And now that I've read more about it and talked to more hyperPOTS patients, we all have bleed in this one. If you are woken up like early, like out of cycle. So every time like my mom tried taking her on that trip and they had to get up at like 4 a.m. and Evy just was completely loopy and like crazy and vomiting and sick, we both get that. Yeah, I get that too. All the all the hyperpaths patients I've talked to have that. Is that not wild? I mean It's funny. It it's very concerning to me that based on the research, that over half of the POTS just with no subtype no subtype no POTS diagnosed patients have actually in that study have hyperPOTS. So again, I think it's something that's rare, but not rare. I've found some things that help. I don't take medication because my experience with POTS medication was absolute chaos. So I tried finding all the life cycle or life cycle, lifestyle changes and just ways of working around, you know, adapting my life to deal with it. But I've found a supplement. And by found I have a very weird way in which it came to me and I'm going to put that story in our paid content because it's very woo. And it's crazy, but it's called Baswellia serrata. And it's basically frankincense that you can ingest. And I've been taking it for a couple months now. And my symptoms are so much more than a liquid capsule. Okay. And take two a day. I went on a hike yesterday. So I had Two major wins yesterday. I went on a three mile hike yesterday. You remember that lake I took you around? Yeah, the one that I struggled to like Yeah, before you had surgery. Yeah. I went back and watched a video of me walking and I'm like, my God. Yeah. And I still have the same issue. Yeah. I did that in ninety degree weather without a hip brace, no pain. Well, I have pain in my toes, but that's a whole other issue. That's a dangerous. I didn't have hip pain. And I actually sweated. I have not sweat in years. I mean like a decade. Maybe more. Since before Evelyn was born. I sweated like liquid coming off my skin. Wow. So I was able to comfortably exercise. I had energy this morning. I cleaned my room like I when Tiffany and I were having that dialogue about the internet. And I hadn't heard I'm like, I bet there's migraine. And then you were like, hey, I'm ready. And I was like, that is not. It was like the opposite of it. I I mean, I was pleasantly surprised. No, I just had my phone on united and was be bopping around. I got some reasoning. It's not my normal podcast recording attire, but I'm I'm here for it. I like being sporty spice right now. It's fine. I've got two boxes of clothes ready to go to be donated or sold or something. I don't give off. Kill it. I I cleaned my whole room. And I did not get as far as what I wanted. I'm I bought a I bought a whole separate shelf to put my fragrances on because it's become a problem. Yeah. A new fixation. but however Evelyn is laid out on the couch mid-migraine. So and he did have good advice and lifestyle suggestions, the cardiologist, for her hyperPOTS. But he did just warn us that the hormone changes of the teenage years into young adulthood are just very chaotic, particularly for girls. And I do really believe that COVID kind of spiral that further. Yeah. That's like and me with mono. and so she's starting to listen because she is so desperate about the things she's been so resistant to. So I got her to try compression leggings finally, like like actual compression, not just like not the ones you find leggings. Right. Yeah. So I actually died like medical gradeyish. Yeah, medical grade. I actually got I actually got some PR leggings. Nice. Also, anybody listeners, Costco sells great compression socks. They're great for travel. Yeah. So I've tried a couple different brands and I have a really hard time getting on compression wear because My fingers are so they they're so hypermubble that they're grip you part when I'm trying to pull on compression. So I had so I also have lip edema and s sh so does she. and so we benefit in more than one way. And so I've tried, you know, the higher grade compression. And it's, you know, the ener the energy to get it on and the pain in my fingers to get it on is almost not worth it. So this brand that I got sent is like a lightweight summer compression. And I thought, well, there's no way it's gonna be like a high enough grade compression, but somehow it was just it's it's lighter weight. So I was eight Easy it was easier to get on. I was like, maybe I need to look at more of that those types of fabrics. Because all the compression fabrics I have are really, really thick. Yeah. and then one of my so I go to a lipidema support group and they're just fabulous. Shout out to them if any of them are listening. And one of them was telling me that even within the same line of compression like from a brand sometimes and I can't remember which one it is she said the nude color is like softer than the black one and I only had only tried the black one. So I just need to try more things. So I I struggle with compression also. So often I will buy athletic leggings as opposed to true medical grade. compression. but Evelyn just won't do anything. And she has pretty severe sensory problems. but my sensory stuff is I I'm not overwhelmed by compression. It actually helps my sensory stuff as long as I've shaved my legs. so hopefully that's a win for us. And she she liked it and she the only thing we don't like is that where it cuts in the knee because we have those fat pads. From lipidema there. so it hits weird. So she was like, Mom, I think I want to try the full ones, like the hot, you know, that are like full leggings. So I was like, okay, we'll get some. and he did lecture her about napping. And you know, one of the big things with us is, you know, the need to rest. He's like, you cannot be reclining and laying down. During the day, you need to be like your heart needs to be above. Yeah. So you're flowing. and then just the regular exercise and movement thing is important. But he said we need to POTS patients, all of us, but also especially hyperPOTS patients, and particularly if you're a lipedema patient, you need to focus especially on lower body strength. So you need to be, and I'm naturally more muscular that way. But you need to you need to really focus on building muscle in your legs, your glutes, in your lower body, because that encourages the vascular flow from those weaker vessels down. And you said if you there. So if you have children or or younger people with these conditions with hypermobility. you need to start that young. Like it even before they're in puberty and developing POTS, he wishes that's one thing he wishes he could tell parents is to start lower body strength training, especially with girls really young, because it can help prevent severe POTS problems. and looking back, like both me and Evelyn were skinny, scrawny little kids until we developed like lip edema. but I d I do have I do have a lot more muscle than her and did. But she stopped playing sports earlier than me because she was advised to. So I that was really good advice. and he said to prioritize your rest in in the in the bed for sleep time. And he said really try to get ten to twelve hours of sleep, no napping. And still with the bed elevation, about three inches. Yeah. The three that lifting the bed. Mm-hmm. And so those were the those were the lifestyle changes, compression, even if it's athletic wear, just go any kind of compression, raising your bed a little bit, avoiding laying down and reclining during the day, building lower body strength. And he said to re to like recondition if you're struggling. I don't know we've ever talked about this, but like recumbent exercises, like exercises laying down or in the water, like flutter kicks, Pilates. Boothtops about Pilates. Yeah. like I do water cardio. A lot of that is recumbent, or because it's more weightless, it really lends itself to bots. so really good like protocols for lifestyle management that aren't just medication. That was helpful. That's great. But it was nice to have a a doctor say, Yeah, your self-diagnosis on your child was right. And the sixteen doctors you saw in the E D were all wrong. And the validation continues. So that was a long answer to the how are you since the conference? You didn't have to recover a child since the conference and you got to come home to some fun, albeit stormy. But how are you? I'm good. So yes, so I was Carolyn fetched me from the airport. that was exciting. Yeah. For your child to want to see you and not ditch you? Yeah. I give them money. So anyway. They they do DoorDash also. So we got got back from the concert. While we were at the conference, my son had my car up in Pennsylvania with his girlfriend. And he was rear-ended Everybody's fine. But sexy, the name of my car, for those of you who don't know, she is named after a TARDIS She's TARDIS blue she's got a little boo-boo on her back. Rob was not at fault, so it's completely covered by insurance. he is safely back in Texas. So we went to go see Muse the day after we got back. And literally the I trust my If you don't know, Shelli is obsessed with Muse. They're my they're my jam, man. Like I don't know. There's something about that music. It like speaks to my body in a way that other music, some music does. Most most music, I feel music. That's one of the that's why I love concert. That's why I love music and dancing. I think that's why I've always got a little beat going on. I think that's why I sit and swing. This is a shared special interest, I think, of all of us on the show. We're all music obsessed, but in our own way. Yeah. So Anyway, we went to go see them at Merriweather Post, which if you're local to Maryland, it's an amphitheater style. They've got lawn seats, they've got covered pavilion seats. I've I always go on the lawn when I'm there just for the more nature outdoorsy experience. Plus, you're not crammed into a seat, like bodies on top of you. I can share some pictures here. You can see how much space I had to. Sit, stand, dance, roll around, put my feet in the grass, watch the moonrise. during one of my favorite songs, I got video of the moonrise coming from behind the clouds. It was, I'm getting chills right now talking about it. It was spectacular. I've seen Muse 15 times now. This out of all of the shows I've seen, my number two favorite. And the only one that tops it is the one I saw at Red Rocks because Red Rocks. I was just about to say my bucket list venue is Red Rocks because I want to experience the like nature and the ambiance of that venue. I saw that show with one of my besties, Amy. She lives out in Highlands Ranch. her husband, Kelly, and then my bestie Carrie from here and leap. It was like six months after my 40th birthday, but we flew out there because it was like I was like, this is for my birthday. And saw them at Red Rocks. It was god, it was I got to meet up with one of my friends from high school I hadn't seen in a while because he lives in Boulder and he's a big news. It was it was just so cool to be there and it and feel it. also I haven't had a chance to address this yet, but since we brought up music Red Rocks, it's a good opportunity to. Let's hear a Jared Leto story from Shelli Wait, let's hear a Jared Leto story from Shelli Yeah. Okay. It's it's not like a personal interaction with him. It's just they on the tour for when Muse was at Red Rocks, 30 Seconds to Mars opened for them. And that's Jared Leto's band. they played for too long. And I think like he could tell. Very overhyped in my opinion. Well, the crowd was getting restless. Okay. This motherfucker is like, hey. Who wants to hear muse? And everybody's like, Yeah. And he's like, Well, I'm playing three more songs. And we were like, fuck you Like we were. So then he like played another song. And I don't know if you can. Weird vibes off of that man. Let me t the his behavior on stage. I mean, of course I had a tiny crush on him when he was in my so called life. But that was gonna say in high school. But that was in the nineties. He was dreamy. Like after he was on most of my so-called life, I was like, meh, there's something about him. And then whatever. And then it confirmed it when I saw. Like, I just was like, You're a dick. I don't like you. You. He was and then all this stuff that came around, I'm like, you know what? I could I could just tell from the way. You were knowing you weren't the headliner, taunting people who were clearly there to see the fucking headliner. And you're like, nah, I'm gonna play for 30 more minutes. Yes, he thought it was funny. And then I swear this one song, I I looked at Carrie at one point. I was like, I don't even know what goddamn song this is. Cause they were just like doing that guitar riff that and I was like, Is this what we're getting for till we die now? Like, get off the stage. Anyway. And that concludes my Jared Leto story That's disappointing. But Muse killed it up. No regrets. Gives me a Jared Leto of that up story, I guess. So I was thinking we could kind of list off or go through like just like an overview of like not getting to the meat of it. Cause just like a general. Yeah, like here's a general, like, okay, this is all the good things from the conference, and then maybe like our little criticisms of our experience. Yeah. Yeah. Because like I haven't processed everything from the conference yet. Like we have s we finally got the slides after the conference. That is a criticism, so I'm jumping ahead. But we don't have the recordings yet. And I still wanna like so before I start making episodes incorporating we learned from the conference and any new research. I kinda wanna be more prepared on that. But I do want to talk about our experience. Yeah. Do you wanna talk about the good stuff first or the bad stuff? The not so good stuff first. Let's start with the the cr the the critiques. That way we end on a higher note. Okay. Yeah. We're gonna take a walk while we do that because I gotta get some beverages. Well, I'm just gonna run through mine very quickly. Okay. I'm not gonna like belabor my points. overall, it was a very overstimulating experience. because of a couple things. The audio was overly loud. They held the conference and the rooms for the conference, like where we stayed, was in a Marriott, and I learned that Marriott, Pumsen, their particular scents, which use VOCs, which are migraine triggers. So many of us, not just me, had a constant migraine. while attempting to learn things, which was very difficult. this was the most serious difficulty for me in the conference. and I'm a high masker. I mask through my health symptoms and my autism symptoms, but this past year I've been in burnout, so it's harder for me now. so I did miss some things that I didn't want to miss. And even though I was in the room, I was always in noise cancelling headphones and it was still overstoothing. the spaces were overcrowded, we were on top of each other, there was not enough space. there was a lack of dietary options and the schedule was very very, very gruely. There was a lack of breaks. There was a day where they did some like workshopping, having the patients that were present for the for the conference, as well as any participants that aren't patients, workshop their experiences and ideas that would funnel into. research. The way it was proposed to us was we would have discussions to help us prioritize for the EDS Society on where research money went. However, later on social media, it was positioned as that workshop and our ideas were going to be used for resource or for research. Let me say that again, because I feel like it didn't make sense. Later on social media, the EDS Society said that that workshop from the conference participants, our ideas are going to be used in research. However, we were not given informed consent. I think that's unethical and I have concerns about that. I need to go back and reread our conference fees. So something was misrepresented at some point. Unless they slipped it somehow in our conference attendance fee. So I don't know. I'll to so Shelli can look at that. Yeah, I'll be in charge of that. at the Gala there was an additional like an add-on appearance that wasn't in the initial agenda by the Dallas Cowboy cheerleaders. And I've already made a a video, a c two videos on it, and I have very mixed feelings about that. I haven't yet. So we can talk about that when I give my spiel about my taking. Yeah. so you know, obviously that was pretty offensive to those of us that are patients. I I did my my best to talk to them and and educate the two that were there though. but still it was very uncomfortable. and then finally the thing that really bothered me personally is one of the primary driving forces of the Hacking Hypermobility podcast is to give the lived experience. a voice. So we talk about the patient perspective of navigating, being undiagnosed, getting diagnosed, being parents, and talking to the people that aren't necessarily always represented, and talking to the different patients, and talking about the research, the state of medical care and how it affects the patients. I know I coined that phrase in relationship to our podcast, and we have used that for a long time. So to hear that being used specifically for the EDS society now felt like they ripped it off of us. It could just be that it was out in the collective conscience and it may not have been intentional. However, To me, they don't seem to really represent that aspect. I didn't feel very well represented at that conference at all. And it felt and and based on everything that I just explained, how they put on this conference, which is very full of patients, even the scientists. present our patients. Yeah, that's why they got into the science. Because they're like no one is because there's no representation. Let me solve my own problem. All of us there. Almost all of us are affected by this. Yeah. The fact That's my major criticism is that it was very tone deaf. Everything was tone deaf. And you can like chalk up a lot of that to logistic problems and we're trying to do so much in such a short amount of time. And turn it down. Do less, do it more often. Change your cities, move around, make it mobile. Like what are you doing? I have so many ways to fix this. And it's very easy. For us to sit here and criticize it. I'm not putting it on a conference. I I didn't have to do this. But I think to me, the painful part of this was to have those particular words that I take so personally used, but then it's very clear to me that they don't represent the lived experience of a patient. Or it didn't seem like they considered it. Those are my criticisms. I'll let Shelli say hers. Those are my summaries. And then we can move into some more positive things because I have so much positive stuff to say too. Okay. Me too. So I have many of the same criticisms as Luna. Trying to think if there's anything different I wanted to add. I wanna say this and I I don't want it to come out. I think screening the movie complicated is incredibly important. And I'm really glad that that was available and that Donna was there. But you know what I mean? I don't think that should be the first thing that you show offers a bad way to set the tone. Right. And they did offer, you know, a trigger warning and you know, it no pressure, but just To me, that set they almost put a night like a slightly gray film over it, over the whole experience, just like or my anticipation of the experience. Because I was like, damn, like, hey everybody, we're glad you could be physically well enough to come to this conference. Now let's watch this. Yeah. I don't I I didn't watch it. I I don't know. It was this it was offered as a screening when I went to a conference last summer. And it was something that was offered. I can't rem it was a two-day conference I went to. I feel like it was offered in the evening after the first night. Like I I feel like that might have been like, hey, maybe do that line dancing the first night where people can meet people and then do the screening the second night. That's just a logistical thing. I don't know what people's schedules. I don't know. That that for me The location was terrible. The location was trash. And I'm not talking about Texas. I'm talking about If someone asked me, how was your trip to Dallas? Did you how was your visit to Dallas? I didn't go to Dallas. That's not why I went to the conference, but one of the things that I did appreciate about Philadelphia, which is the only other in-person conference I've been to, was that it was in the heart of the city. And there was a lot of there was just a lot of options, options for anything. And that felt more limited. we had the resources to have a rental car, which afforded us the opportunity to do things or acquire things if if they were necessary without extra stress, maybe. But I don't know. I literally when I was telling my husband about it, I was like, Hey, you know that hotel that's kinda like off center of those town center by our house and he's Yeah, I was like, that's where I feel like I'm at. You know. But also I know you've got to work with there were some things within walking distance and like there was a grocery store. Yeah, it wasn't completely trapped. It wasn't completely isolated. But also there was not time to go anywhere. I actually did an Amazon order because I didn't have time to go anywhere. Well Right. And so go at that the schedule is jam-packed. And again, like we I just feel like if you keep getting the same complaints and you keep giving the same excuses, you don't really care. Because the a lot of these from my understanding, they picked this one because their complaints previously were that it was confusing to be in a conference hotel with multiple conferences happening. That they wanted to have a hotel with just one conference space. So it's gonna be a smaller hotel. So do kind of get that. Okay. Well, if you want to go that route, then get a smaller resort thing and rent out the whole thing and then people can anyway. But it was, I mean, it was very it was it was too small for the amount people. Yes. Yeah. Because mobility was a big problem. And so I one of the things that I thought wasn't great was because You know, we keep saying there were no breaks. Of course they had breaks scheduled into the day, right? But the breaks like during the break, they're like, Okay, it's a break. Now go eat lunch and network and rest. Like we were supposed to do all of those things during a break. That is not a break. And then when they would set up frequently had speakers during the breaks and Yeah, then they would have these like bonus sessions that were like during the breaks that you could go to. where my struggle I I didn't probably get to like make face to like the way I meet people is like I make them approach me. I like wear a weird shirt, have a cli something, or I'm with someone. Like I'm a vampire. I don't invite myself in. If you have to invite me I didn't feel like I had a lot of good opportunity for that because when I was navigating like the common areas where they had I was so focused on not falling down because I didn't take any I I took a risk and I didn't bring any mobility aids with me because I I my hips are fixed and my shoulder I feel better walking. But not there because it was like I'm glad I didn't have any mobility aids because I would have I would have been frustrated. It would have been a lot, yeah. Yeah, it was a nightmare for me who's mostly able bodied now, as far as like structurally and I struggled to walk in those places. And so I just I don't know. That was not great. the chairs were better this time. yeah, physically it was more comfortable if you could get to a seat. But then there were some of the tables were still really crammed. The rooms were still really We're top of each other. Yeah. Anyway, I I think I'm done with the negatives. That's pretty much everything you said. what else? I don't know. I was worried they have evening sessions. Like some people are night owls. Like An idea. There were a lot of like people were trying to do like breakout meetup things. But because we were in a super small hotel, there were no places to go do that. There were no places to do it. People were wiped because the days were so long. It just wasn't happening. Or if people did, like there wasn't a lot of us. And I was really worried about sending a bunch of probably gayer than most people with pots to Texas. But the truth is we didn't have time to leave the hotel. Yeah. I think we left like twice. I didn't leave at all. I was like, here's their rental truck. Go have fun. And and what upsets me most is I do this to myself every time before a trip. I spent all this time looking up what nature preserves were around the area. Cause I was like, Yeah, when we're done, 'cause the sun's not gonna set till later, I'm gonna go do that was hilarious, Shelli. Like I could barely function. I don't even think I ate dinner Sunday I got I think I got that's the day I got room service, right? Yeah, because I was like I'm tired. I'm just gonna get this into Now I will say, despite all of that. I still think it was worth going. My positive Yeah, no regrets on making the track at all. Yeah, my positives outweighed all of that. Yeah. The Global Learning Conference this time was focused on the wide overview of all the co-occurring conditions that come with the Ehler's Danlos syndromes. there were excellent speakers, and there were excellent resources. I feel like they took the research and the conversation a little bit. further than they have in the past. I felt like there was very active listening to patients' input based in their not just in their presentation, but in all the interactions. But I do think there's a lot of bias in those efforts to listen to the patient, like in that workshop, based on who can access the conference. So if you looked around at the people who can attend that conference, there's a class bias, a race bias, et cetera. So I am concerned if that's informing research, because if you read any EDS paper in any subtype, there's always you know a disclaimer at the bottom of the paper that says, These are the limitations of the study. And its research size and limitations based on the patient population that they were able to research. And it's most often due to race, class, access to care. I really wish we would listen to all patients To inform the next step in medical research. I don't think we're going to move forward appropriately in until we can have that kind of approach. I will say we were much more inclusive on another topic though, and that's looking at things through the lens of neurodiversity. topics in almost every Comorbidity that were discussed included the lens of neurodivergence. And they also took that medical lens further and examined disability justice frameworks, which I was surprised to see at the EDS conference. There was definitely a collective paradigm shift. To reexamine hypermobile EDS as multifactorial and not just genetic. And I would say that was revolutionary for the EDS society and for the official medical research to come out and say that. Though the research in the past few months and maybe even a year has kind of been pointing in that direction to really concretely say that. Say the words. I've been saying it for a long time. Some other people have been saying it for a long time. Same as the disability justice frameworks have been talked about external to medical research and clinical practice. We've been discussing this. Patients have been saying these things. So I do think they're hearing us. And that was so encouraging. so they are examining things like epigenetics, and Scientists are collectively identifying things like modern culture, the systems in place, and environmental changes as potential and likely sources to this. It was fascinating to hear them say that. It was very validating. despite the ramifications of stating something so bold in Western modern healthcare. there was a very clear acknowledgement and validation of patient experience and medical trauma throughout most of the presentations. again, it was it was very validating. It was very there was a very big shift in all of these things that were very appropriate and I hope they begin to inform clinical practice more and more. personally I think I gained just even more invaluable connections and resources, the same as I had experienced at previous conferences. one of the most magical things about this conference is being in the room. or in rooms, period, with people that just get you. you don't have to explain yourself or explain your what you might be struggling with at that moment, or there's never like a preface to your experience. You can just be you. And so like we all have different personalities, or we all have a different experience of humanity, but like our disability kind of melts away in a way, but then it also is really validated. It's like this most it's very humanizing. But then also it's like just this instant friendship and bond. Like and Shelli was kind of apprehensive at first, but then I got to see her, and that was so special to me to see her. Like I would like peek across the room or the table and see her bonding with and so like and then I kind of started to see everybody was doing that. Like it was just this network, this big kind of collective little beehive of little little zebras. And different subtypes were represented and different ages and it was it was just really special. and I don't know that I noticed that as much as the at the conference last time. So I will say My criticisms of that workshop where the patients all sat together and work talked about certain topics. Just felt redundant to me. I I I had criticisms of it. But it open it was really the the the only time we got to kind of talk together. So it really opened up these dialogues and connections maybe even more. And that was, I think, really important. So I think they should continue to do that, but with informed consent or just as an informal to be more clear about like are you using that to inform resources topics or are you What is the purpose of this? and I do think maybe the conference could just benefit from more socialization time and or more scheduled time with vendors andor that sort of thing. Downtime for that purpose because that was truly special. speaking of that, even more special to me was seeing the children get that opportunity. My daughter got to do the teen. Camp again. It's put on by Camp Hope. and she got to go on scholarship again. And she's done it twice now. The first time she was really apprehensive. Remember, she didn't want to go at first. Yeah. But then she made friends that she's still friends with. And this has been going on two years. and she was really hoping some of them would be there, but they weren't able to come. But when she got there, one of them was there. It was kind of a surprise. Her friend from two friends from Scotland were there. And they had such a hard time saying goodbye. But the team programming is foundational to my daughter's like sense of belonging and feeling like she does have a place in the world despite her disability and her struggles. she made new friends again. And was so excited about that. She came back reinvigorated despite her very awful physical challenges. and just being reunited with those, you know, previous connections really inspired her. And they are talking about volunteering at Camp Hope and applying to be summer counselors. That is in Ohio in the summer. She goes to Ohio in the summer for a little while anyway. She does, and it's near Cincinnati, which is near where she goes anyhow. So it'd kind of be nice. so just the fact that I'm proud that she also has like the heart within her to give back to our community the same way I do. It doesn't she doesn't have to do advocacy work or what we do, but like, you know. I think it's important that we make meaning out of our struggles. And so, like to her, that's how she gives back to like the next generation. And she was telling me about the littles, the younger kids. and there was a really little girl there. her name is Jade. And she was like, Mommy, she reminds me so much of me when I was little. And I was like, I know she looks like you, like the same bruises all over her legs, a little skinny and kind of shy and awkward. But then once you get to know her, she's really bubbly and just so cute. And so I had talked to her too. So I knew exactly who she was talking to. Or, you know. And I was talking to her in the hallway and the mom comes up to me. She's like, Do I know you? I was like, no, I don't think so. Jane just like came up and talked to me. So I was talking to her. And then anyhow she's like, I think I know you. I feel like I don't know you. I promise. Anyhow, like we get home a few days later and she messages me and she's like, I did know you. I follow you. That's funny. So the whole time we were there, there were a couple people that are followers that were there but never found me. Or no one said anything to me, but I also don't say And I was like, come find me, come say hi. And they didn't. But the one person who found me didn't couldn't figure out who I was. And I was just chatting with her kid. So I just think that's funny or like it's always our kids that bring us together. and then so you know, Jeannie and I have like this special little connection. It was more honestly it's more special for me. But you know, she was the first help I found back eons ago. She had this tiny little YouTube channel, and that's where I found help. And now she has a whole big thing. She has she's she's a big deal. She's a big deal. She has an evidence-based practice of movement therapy now. The only one for EDSers, by the way. She has the whole zebra club. she's done so much as a patient advocate and now as a scientist. It's inspiring. And you know, Evelyn wants to to do what I was not able to finish. She wants to go to med school. She really wants to study neurology because that was that is her primary struggle. And I worry about that so much. But then she looks around and you know she's talked to Dr. Franco mano now. She's talked to Jeannie Come meet this geneticist, I know. that was the well, I skipped over that. That was I know. That's the story I thought you were gonna tell. That's what I expected you to tell when you said. I think that's kind of the majority of my highlights. And I and I will say I got the most giddy over like the people, but overall. Like the overall, like what is that called? The takeaway for me was the collective paradigm shift in looking at how we look at this cluster of things. not just the medical models, but also through the neurodiversity lens, disability justice, and trying to bring in patients more into the medical conversations and research. Because that's what I've been attempting to do for a very long time. We really. I Think what is annoying about that whole thing is like people instinctively like if you wanna know about something, you go to someone who's been through it. Hmm, how did you do this? Go talk to that's like my first go-to. So to me, like I I'm thrilled that they've made this, but the fact that it's being like it's groundbreaking, we're actually talking to patients, I'm like Fuck have you been? I mean, I know it's not. It's just I don't know. I think I saw a little clip. I didn't click on it because I didn't want to become my rate, but it was like Trump's panel council on women's health has zero women. Do you know what I mean? Like that's and I'm kind of like that's when I saw that headline. That's what we don't include women in medical research. Well, right. So that's why it's like Me, my natural instinct is to be like, like, how did I want how did I learn so much about birds? I sat and watched the birds. The birds told me about the birds. The birds told me about the birds. I didn't tell the birds about the birds, the birds told me. And I was like, cool. And then as I watched them, I changed some stuff in my yard. And guess what? I have better, happier birds now. Mm-hmm. Anyway, that's a derailment into nature. And I didn't need to do that. I just The answer is right outside our door. Pat themselves on Yeah, I just get annoyed when people pat themselves on their back for shit that to me is has been obvious since I could put that thought together, which was a long time ago. Wow, we're supposed to be talking happy. Sorry. Sorry, but that's great. I mean, it it is gonna move it forward. I saw this very interesting TikTok and I promise it has something to do with this conversation. About And I'm gonna summarize it and I'm gonna do it poorly. about how Trump represents a Jungian archetype, the shadow king, like the tyrant, the destructive, unconscious, dark side of like the king archetype. Yeah. And that really like this time, this culture, this country needs that shadow to make very clear the dangers of these systems of oppression in place. Like white supremacy, for example, like capitalism, like how our government functions. And I couldn't help but thinking, it wasn't said in the video, but I couldn't help but thinking how that applies to to health care, because you know, we think about the whole Maha movement and how that's been twisted, and what you just said about how they're patting their backs for calling it an effort for women's health care, but w what women are involved. Of Photos and memories from the Global Learning Conference. And I remember thinking the same thing, sitting in the conference, looking around, especially at the award ceremony. and that's I think that's why I was so mad about the cheerleaders, because it overshadowed the awards. I didn't even talk about my cheerleader thing, but I can do that. I can come back to it. And this can be said for the autism community as well, but particularly for the Ellers Day and Low syndromes. The research community, the advocacy community. is all women almost exclusively. Not all. There's a few stray men. And and they're wonderful advocates, so I'm not discounting them. Sure. But it it's it's mostly women. The scientists, the researchers, the advocates, the people at the forefront making movement happen in this are women. And Dr. Nichols made this video and It it it's just tricking. All women. All the scientists, all the advocates there, women. And so you think of that the the shadow side of the oppression has has to come to a head. It has to come to a to corrupt polarize obvious end for people to you know, rise up against it to polarize into the opposite direction. Yeah, but I d what scares me about that is swinging too far the other way because that's not any better. How far? Yeah. But we need balance. I'm not saying we need authoritarian Trumpers, but Well, there's certain laws of polarity and you study Jungian archetypes and stuff. There's I mean yeah. And so this is And not to bring it into politics, but it It relates this disability is political. but my my point in all of that is I I do see I do see evidence of it it's just interesting because you see the influence of capitalism and patriarchy and the problems with westernized healthcare in I I would say those are the root. cause problems that of those complaints that we had. Yeah. But then I also see all these good things. That's matriarchal, those are those are the those are the things of resistance rising up. So I do see this interesting like polarity happening. So the the structure of fundraising. I have mixed feelings about it. And you can speak to this better than me because of your background. The structure of fundraising has to exist in capitalism because that's the structure of economics we exist in. Right. But then the structure of healthcare and moving representation for this condition forward is it's direct odds with that. Can't be can't be based on that. Yeah. So I think that's where a lot of this these conflicts come from. And that could be that could be a very good way to describe the internal yuck I feel. Yeah, because you're always gonna have. Yeah. Yeah. Yeah. Again, so. I need to remind myself, I need to keep reminding myself their mission. Is not to take care of the society's mission is not to take care of Zebros. The S Society's mission is to research Yeah, their mission kinda goes against it because the only way to do that is to participate in capitalism and patriarchy. They're in bed with that to do that. And I don't like, and you have to think the people that are like us that are in that, you gotta I can't imagine how that must feel. And once I realized that I was like, okay that must feel icky all the time. I admire that they could do that because I I would struggle. You know you see patients all the time asked, so why don't you have a fund to help patrons? That doesn't do anything. It would, of course, do something. Yeah. It doesn't do anything. So they're they're they're up here thinking about like the greater, higher good. We need people to be. It's just it's because of So everybody has a role. It's all needed. But the great work that they're doing, I we just need I think we need something else to bring in balance. Yeah. I think and exact all of the research and all of the information and everybody who's out there getting the information is sharing it, which is driving more and more research. So wow, there's more, there's more people. This one's meanwhile. The amount of research that has happened so rapidly is radical. You you cannot argue without success. Right. But like it's Exponentially greater than the amount of support available to the people who have or suspect they have it. And as the as that divide grows, it's It's the same thing is going on with neurodivergence right now. Cause now we're gonna start it's just gonna open up the discussion. We're already struggling, disabled people are already struggling enough. And now it seems like, well, so and so is more disabled than you they're gonna try to you already see it, but like the the disabled Olympics. No, well I've struggled with this and that and you and that I I'm gonna be honest. I no longer care about the gene. I care about I don't either. You can diagnose us clinically. Like I do think it's important to have something in black and white. Fine, keep working on that. But let's move some money over to let's get some standard of care protocols. Let's enable doc let's educate clinicians and doctors to have a path to diagnosis, standards of care, et cetera. That's a legitimate question about some of the more ultra rare forms. And here we go. Said it before in the DS for dysplasia episode. They keep saying AEDS is ultra rare and one in a million. And I'm telling you, this bitch sitting right here has I think we both have it. And I'll tell you why. Also, they're all hyping up the overlap of neurodivergence. Have you sat and read the diagnostic criteria for AEDS recently? Because I have. And there's several things. There's several things that are. I don't think they've studied enough of us to actually several things on there that are autism, like mutism. And I can't think right now because like anyway, but I I just don't think they know enough genetically. And I also I think that's why I get so frustrated. And that's why I call it like a hypermobility group or the Ehlers Danlos Syndromes. Right, right, right. Because so many of us have a hEDS diagnosis or like we're not sure what your variant is. And like Evelyn has a different diagnosis than me. Like like cause they couldn't decide because we have multiple variants. How does that make sense? The other question I have is how many how many I would love we should have a geneticist on. And here's why. I wouldn't I here's questions I want to know the answers to. Like I have my whole genome. Obviously I'm not a geneticist, but I'm not your average bear when it comes to looking at data, right? So I have also seen some things that I find suspicious. But what are how many how many How many variants in your collagen does a normal person have? And how many variants of a specific thing that you quote unquote label harmless can a person have? Like, because I tell you what, if I take all of those call genes or any of the T and X V, like any of those, and just need to look at all the unknowns. Put them into there. I have I have several genes that have homozygous differences. Which means it's could be good or bad based on but they haven't studied so many unstudied and they're on call one A one, call one A two, call one A three or call three, whatever. Did you have any other like disorders or diseases pop up when you did the polarine testing? Like we found out we were albinos. I did not have that. So for me it was more of the auto inflammatory things like the familial Mediterranean fever I didn't know about. Yeah and we have I marker for Yao syndrome. I have the and a couple other other things. Alpha Gal. So to so do means here. I don't have alpha gal. No. It's it's complement it's the complement issue with the C3 the complement one. Yeah. Okay. Complement yeah. And I markers for did you have cystic fibrosis? There's fibros there's fibrosis, not cystic fibrosis, mom's cousin died in 2019 and she ended up needing a lung transplant. Never smoked, never had full of fibroids, full of so well and I have lots of marks. I have lots of markers for like well, right. So I've got tons of COPD. Like I looked at my genetics and then I like looked at the amount of weed I smoke and I was like, you know what? I'm a plate. roll the dice on this because this makes it in a totally it's not in a cold gene or anything. I just I'm like what's no it's not. It's just I don't know. But so that's that's what I want to know more about because I feel like they're kind of like well here are these rarer types, but we don't know about this one. They put and and I know they spread the money around, but not really because I know the people with the rarer types are like, yo, what about us? So I feel like If they expanded I've got a lot of the I mean how if you look at all those kinds, I mean I f I fall into like I've got a lot the brittle cornea, I got a lot of well Evelyn, that's her diagnosis. A lot of she has a DNF gene. The periodontal body but they were more concerned about us having the PRKG one, which isn't under Eller Stamos because of the whole Ritter Foundation thing. Right. Right. But I do have markers for aortic aneurysm and it's on those magic and multiples of those. Yeah, taggy. And obviously. Right. but anyhow, so I went down the CF rabbit hole and there's a marked increase of joint hypermobility in CF patients. But the current thought is that's just happenstance. I mean, if you think about how much of the body is made up of connected tissue, there's gonna be everywhere. That is just like a coincidental overlap. But I No. There sh my point is it may not just be COL genes. And it is obviously polygenic and epigenetic. Like I've always said, it is something above one gene. Master switch spectrum. I don't know. I I really don't know. I don't know enough. We have not done enough research. And anyhow, that's enough. That's enough. I'm not gonna spiral on that. I think that's enough for the whole conference. Yeah, I've done talking about the conference. Hi, everybody I met. I won't name drop because if I forget one of you, I'll feel bad. So hi everybody. There were so many great interactions. and the other one. I didn't tell talk about Dr. Franco Manco and Evie. No, we got derailed because that's what we did. We got derailed. So I don't remember what day it was, but Evelyn I think was like on a break or F at the end of the day or something. And my daughter comes out. It was a lunch. The lunch. Yeah. And she was like, Mommy, I need you to come meet somebody. And I'm like, okay. She was like, I got her card. She's a geneticist. Like, cool. And now, mind you, earlier in that week or the day, I think I had told I don't know if I told you or or Jeannie, like the one person I was scared to go up and meet. was Doctor Franco Manco. I don't know why. She just intimidates me and I have no reason, no reason to be scared of her. Like, especially after meeting her. It doesn't make any sense. So she walks me up to this nice sweet lady in this adorable little outfit with a cute little pocketbook. And it's Dr. Claire Francomano Like, hi, nice to meet you. Evelyn introduces us, tells us about their little conversation. And she was just gracious and sweet. It was it was just funny. And then I had a really good conversation with somebody else that I just absolutely like loved their mind, Dr. Emily Casanova. And brilliant one of the most brilliant minds totally could talk to her for hours. and then the funniest interaction I think we had Was probably Shelli. When she was driving, we were trying to leave. Do you remember? Yes. I'm gonna let you tell that one. Are you You know what I'm talking about? I think so, but are you talking about where I ch hopped out of the truck and told Doctor Maitland she could do whatever she wanted because she's Doctor Maitland? Yeah. That was yeah. That was fun. I love her. You know, like in the hotel where there's like an i fan I fangirled over Dr. Maitland. yeah, totally. And I also my armpit on Dr. Gensemer's neck. That was sorry about that crazy. It's freshly shaved and cleaned, I promise. At least it was doesn't matter if it's shaved. Freshly shaved for the gala. Yeah. The shaved is yeah. The shaved is whatever. Do what you want with your armpits, but it was clean. Anyway. So like in the line, the on and covering for d to like pick up drop off for the hotel, we were pulling up and this like SUV pulls up like in front of us. Like real fast. Like okay, bat out of hell. Outputs. Dr. Maitland, I'm like, okay. I don't know who was with her. Was that her friend or whatever? She was like, sorry, sorry. She pops out like and Shelli just gets out and said, No, you can do whatever you want, Dr. Maitland. And I I seconded. I was like, Yep, I will get your bags for you, ma'am. Yeah. that's fine. It was funny though. And that that does not surprise me that that's how she is, because that's how she is. I would do that too. Like, shit, my bad. Yeah. yeah, it's just Well, she's from New York, right? Yeah. She's in New York. I I grew up there. I'm not I think so. She's she's in New Yorker, I'm pretty sure. Definitely not. If she's not a New Yorker, she could pass for a New York. And I don't know if that's a compliment or not. I'm I'm just a DC girl. What do I know? And a stupid DC shit. confusing 'cause I grew up in Detroit and Nashville. grew up in Bronx and Harlem neighborhoods of New York. Okay, okay. As we've discussed on the show, cheer, dance, I dancing is I love dancing. I did dance before I did cheer. I was always very good at it. I have a very bendy, fluid body, tall long legs that do generally if I think about it, what I want them to do. And I thought I was gonna go farther and dance. and I probably could have, but my inattention in class caused a problem. And I didn't know why, because ADHD. Later I got into cheer and that was for two reasons. It was to s meet my dancing needs and my I liked learning routines. I'm really fast at learning. If you've ever watched any of my TikToks, a lot of those sound sounds that you see me lip sync to, I've watched them twice before I can memorize it and lip it. That's like I'm really good at that. So I love learning new routines and dances and stuff like that. I enjoyed that aspect of it. Plus It forced me to go to like a s a sporting event and like learn the rules of the sport because then you'd have to know what cheers to do. And that translated well into the social world because anytime if it was a sport I had cheered at, I knew enough about it to like hang in a conversation. That's that's a hack right there for if you're like autistic and don't know how to get a word in. So I learned sports from there. But one thing I always struggled with was my my constant injuries. I was always somehow injured. never seriously enough to be like you can't cheer for six weeks because you had a broken ankle, you know, nothing like that. But injured enough to where if I rested, you know, rub some dirt on it, you know, did the the Gin X your kid, you're outside, you solve your problem, you know, you just kind of dust it off, you're back up and just keep going because that's just back up there. And It it just got That hard to keep doing that and to keep feeling like what is wrong with me? That I keep I'm good at these things, and I could I know I could be better, but when I try to be better, I end up injured, and then I it's like two steps forward, three steps back, you know. Like I could cycle, yeah, and it was it was frustrating because it was starting to make me feel. I just internalized a lot of it, right? And so I ended up quitting, doing something I loved. I'm just now getting back like I'm starting to look into like adaptive dance classes here, like how I can actually get really, really back into dance here. And I was sidelined from it for 25 years. Like the last time I really danced so seeing the the young girls there, did I get up there and get a picture with them and be silly? Of course. There's two reasons for that. A my history of dance and cheer, but B, being from the DC area, married to an Eagles fan, I did go up to them and ask them to write Go Birds on my signed picture. They didn't write that, but they did write Love Cheers and I might write Go Birds on it later. we can pretend they wrote it. The two were very the they were very nice. I happened to be in the restroom at the same time as they were, and they I didn't have toilet tissue in my stall and I I I cried out and said, ladies help me and one of them helped me. That was nice. but I worry about because of what they do professionally and they're amazing at it. I their athleticism is beyond reproach. And I think that's something that a lot of people don't recognize in cheer and dance. And I think they don't realize how much work actually goes into it. The dichotomy was weird of the messages, like you were saying, of message of the conference. And then having seemingly two people come rep from an organization who had no idea what we were even about. That was weird. And I'm worried about people who aren't having a conversation like we're having right now. If they just see a picture of the cheerleaders at the conference, they might get the wrong, they might there might be a weird association that shouldn't necessarily be there, I guess. You know what I'm saying? Yeah. Kind of like I love that Katie Ledecky came out and said she had pots. Like that's great. Right. But at the same time, it's like awareness. So then it's like, well then doctors who don't know a lot about it are like, well, Katie Ledecki pots and she's the most decorated. And she's like an Olympian, yeah. Well right. And it just seems like if you were gonna spend money on something like, I don't know, do a raffle, divide it back against among the attendees, like we paid a lot of money to go there. Paid a lot of money to go there, a lot of money to go to the gala. The food was mid. And then the whole time we're there they're asking for more money. In a room full of disabled people who struggle. Give us more money. this guy's gonna match every donation up to ten thousand. What if you did fifteen? Let's keep giving more money. Like I I don't know. That and I know that's what gala's are. I've been to them, my father-in-law and like I know what it is, but it's icky. Yes. But I got to dress up and look pretty and I wore heels. I I I've always felt it about No. I hope if I'm one day not a poor or less poor, I'll still feel gross about this is not to say you should not have cut nice things. No. I wish I wasn't. I mean, like I don't have anything against it so much. Yeah, I'm not against I'm I think excessive excess well. Like It's the excessive wealth that doesn't and help other people. And wastefulness of things. Anyway. People should have means to exist and have a secure life and have nice things and enjoy time. Correct. We should all be eating and afford healthcare and have adequate. And have housing and access to clean water and nature. Education. Yeah. Wow. What a crazy idea. Right. So anyway, so the other thing that happened that was great from the conference is and I I honestly I thought it was gonna happen last time. But maybe we were still too new. I mean we had just celebrated two years after the 2024 conference. So like right at official birthdays, July 18th. so we just celebrated our fourth birthday. But we didn't have like the jump in listenership or followers or anything, but this time around I just checked some stats on our not that I'm super into analytics anyway, because it's not really necessarily gonna change what I say. That's probably why was a black sheep with the government. But anyway. Our listenership in the last 30 days is up almost 2000%. That's crazy. That's good. I mean it's great. We've gotten a lot of emails reaching out, a lot of people wanting to collaborate with us, and we are definitely gonna be following up on those things. Just remember, Luna and Tiffany's kids just went back to school. And I'm me and I'm terrible at responding to shit. So it's not because I don't like you. I'm just not into that right now. I'm getting better at these glasses. Whoa. feel like I can like do computer work again. So we're getting there. I'm getting our sub stack set up. We're gonna probably be moving our paid subscription like option. We're obviously gonna have free stuff, but we do we have to live too. Unfortunately we are stuck in this capitalistic hellscape. we will be offering some options there. here's a question you can research if you want, unless you know a study offhand I can hop into later. But I found I had forgotten about this till I was digging through old photos, looking actually for old cheer photos of me. I found a picture from when I did my first overnight walk, which is the 20 mile walk through the darkness for suicide prevention. I've talked about my my friend Jeff before from years ago. He died in two thousand three by suicide. And so in twenty ten, I went to Boston and we walked all through the city of Boston overnight. And I took a picture of my feet in the morning because they were puffy and covered in hives. And that was the morning after. So like they I didn't take a picture of it when they were really because the lighting was bad. It was like five in the morning. So that was later in the day. But that was the craziest thing. And it it went away, but I I never understood why that happened to me ever, ever, ever, until I finally made the connection of it. I was like, my God. But that was like my blood pooling, like my my bendiness plus mass cells just being like, Why are you still walking? I've gotten hives from exercise before and I think it's from dysautonomia dumping histamine. Yeah. I had no idea. I I I I had always thought, you know, allergies to me were always like environmental or like food based I gave it to my the exercise induced asthma. I knew about that, like asthma, but I didn't think about like but if you think about it, the the cells that have like respond in an asthma attack are the same ones that respond lives, correct? Basically. No? Well, I mean like and I've gotten it from heat. But I usually or like really intense exercise. And I Yeah, I mean I had I walked twenty miles. Like it wasn't like your regular, like let's go walk three, four mile hike. Yeah, I've not gotten it with like regular exercise. I've just gotten it from really intense. Yeah. But I had been training all up to that. So I had gotten to the point where I was probably doing twelve to fifteen in a day. without that result. So like when I went to twenty-was it a higher temperature or anything that day? It was overnight. No, I mean it was in the summer, but we were in like I I was training here in the spring through summer and then it was in Boston in the summer. And I think it was just the amount of time because the heat wasn't it might have been humid, but it was like I said, it was overnight. It wasn't like in the heat of the day. It wasn't. And I'm trying to remember I did the walk two more times. I did it in New York in 2012. And then I did DC in twenty thirteen. But I think I don't remember them getting that big again, but I did start thinking back to when my fingers would start to tingle or when I would get to that point. So I so I usually stop because I get swelling. Yeah. So I noticed that it got me thinking. I'm like, that happens in my hands. So that's that happens that's usually my warning sign. And now I know that. I didn't know that before. for some dumb reason I because exercise is supposed to be good for you. Like it was never like the exercise caused this Yeah. Yeah. And I you know it's funny, you know how I was talking about how easy easy much easier it was for me to do that three miles I did experience some of that pa hand swelling. Yeah. but nowhere near as severe. And I so the and I was gauging because I And then then I realized, I do this almost consciously, instinctively now where I'm gauge and looking down and seeing. And I used to get like my veins would pop. Yeah, mine get really big and very veiny. And I was like, I'm not I'm not that veiny. So I think I would guess it's dysautonomia driven, and then it's a mast cell dump response. fr from the dysautonomia, like d the Yeah, from their capillaries failing. Yeah. That I think but that I mean that tracks. I mean capillaries are small and they heal fast. So it explains why the hives would go away quickly. Like not quickly, but like not you know, summer ashes or whatever take a few days to really calm down. I feel like more mast cell response this summer than ever. Like with flushing and stuff. Rob would get totally on the edgebox. Yeah. Huh. Crazy. I don't know. I am done. And what that was one of the the overarching themes of what most of the specialists doctors were talking about that were medical specialists at the conference was you have to maintain the balance of everything because it all feeds into the other. Yeah. Because pain causes mast cell, because pain causes Dysautonomia because dysautonomia causes pain because dysautonomia causes mast cell because hypermobility causes this. This causes this because this is just a giant feedback loop. It's the my it's not a loop, it's like a bundle of yarn tangled up. It's a Mexican standoff. But like the Spider-Man. It looks like our collagen. A stringy knotted mess. That is yeah. But Erica, my POTS doc I I call her a doctor, she's an NP, whatever. She's my POTS doctor. Erica, you're my POTS doctor, whatever. We were talking and we were talking about all of the different little things. And she's like, you know, it's like the Spider Man th where all the Spider Men are like all looking at each other. Yeah. Yeah. Yeah. Put that on the screen in case you don't know what we're talking about. The Spider Man loop. The Spider Man meme. I'm not good with the memes. I kid we could go see the new Spider-Man yesterday. you did? I didn't. She did. I could care about. I think Rob and Mel Mel went and saw it. Mel got Mel got her masters on Friday. She is a mistress of the weather. Mistress of Meteorology And soon she'll be a doctress. Do you have anything else we want to cover? I think we got it all. Maybe. I love how we're like, no, wait, we forgot stuff and then talked for 30 more minutes. I know, but I feel like I'm really done talking now. cool. Well, so we'll have if there's anything here, look, you've got to look at this cuteness. he's so big. That's that's Earl. He's huge. We gotta go. Okay. Sounds sounds good. Okay, love you. Adios. Love you too. Bye. This episode of Hacking Hypermobility was written by Luna Hande and Shelli Stanley, presented by Luna Hande and Shelli Stanley. We miss you, Tiffany. Hope your internet gets fixed soon. As always, this is our personal experience and should not be taken as medical advice. We are not medical professionals. If you have any medical concerns that require immediate attention, you should call 911. Why am I still telling you this? I don't know. I'm not good at these things and I'm doing it off script. Are you still listening? If you are, you should follow us on social media. Have a good day. Bye.