Latest / Giving Pain Purpose with Lyndsay Soprano / Diagnosis Detective with Angel Parker

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Diagnosis Detective with Angel Parker · Giving Pain Purpose with Lyndsay Soprano

• LYNDSAY SOPRANO (00:05.326) most fuck-straining thing about living with chronic pain and with chronic illness and all the chronic that we have in our world, right, is actually getting diagnosed with it. We spend years and months and months and years trying to get diagnosed. And then the second most fuck-straining part of getting diagnosed is actually getting the diagnosis because that's just the beginning. of a journey that you've already been on to try to get to. And now you're like, well, you've got a diagnosis, so you're good to go. No, no, that's not how this works. It's just one thing that's behind us. And then we're still like, and do we trust that diagnosis? Because for me, I always say, I feel like we're missing something, right? Because I feel like we are here. If I legitimately have these things and I'm doing all the things I'm supposed to do, why am I getting worse? Why? I blame men for a lot of it, just real quick, but why? And so on my journey here in CRPS, Lyme disease and all the other things that we thought we had, I've watched more damn documentaries and read more articles, because by the end of this, we're all gonna be doctors. I swear to God, I'm gonna be a neurologist for sure. And we've had all of our tests, we've been poked and we've been prodded and there's so much more that I don't even wanna think about all the things that we've gone through. Angel Parker (01:01.626) you LYNDSAY SOPRANO (01:29.026) But there's one documentary in particular that I got kind of hooked on called Diagnosis. And it's on Netflix. And in particular, and I've watched all of them, but in particular, there was one episode that I watched that really grabbed me and she touched my heart and my legs to a certain extent. And she was in the first season of Diagnosis. In fact, she was the first episode and I'm happy to have her here today with us. So. Today I would like to talk about getting diagnosed and how hard that journey is for every single one of us. And how it weighs on our loved ones, as well as ourselves. I know my sweetie takes the daily brunt of this. I'm sorry, babe, it's just how it goes. And lately it's been really bad in the pain department, like horrifically bad. And we're trying to identify why all of a sudden everything skyrocketed again, right? The ebb and flow of chronic illness and disease. And then I want to dive into talking about a little bit about our mental health within our diagnosis and the healthcare system and how those all kind of play into our mental health as well. So we've got time to talk about today. So without further ado, I would like to introduce you today to my beautiful and darling little miss Angel Parker. We made it. Angel Parker (02:40.73) you We did! Hello! I'm so excited to be here. Thank you! LYNDSAY SOPRANO (02:48.238) Oh my gosh, this girl, so I watched the episodes, right? And I went back and I watched her episode again and I reached out to her on Instagram over a year and some change ago. And the two of us have stood by each other, we are going to do this thing. So it's so nice to finally have you here and thanks for taking the time to be with us here. So Angel was diagnosed in 2018 with a rare metabolic disorder called CPT2. after being on the documentary Diagnosis. And that documentary started with Dr. Lisa Sanders, because basically what she did is she crowdsourced a bunch of diagnoses for mysterious and rare medical conditions. And then it was based on her New York Times Magazine column about it. And so throughout all of this stuff that Angel has been through, she also became a nurse. Anne got her master's degree, and Anne goes on and on. Anne is gonna be starting her own practice as well in psychology. So I'm rolling out the red carpet for you, babe. I'd like to start really quick to talk about how active you were when you were young and when your pain began. And then I'd like to take it from there. Angel Parker (03:51.693) Okay. Angel Parker (04:01.794) Yeah, I was always an active kid. was the kid... I grew up in a toxic household, so I was always the kid that was outside. I was always the kid at my friend's house playing the sport, running the things. I remember at a very young age, I was constantly... Like my legs hurt, my legs hurt, my legs hurt. And I remember just one time my mom took me to a doctor and they said it was growing pains and they washed it up. And that's what it was always for the rest, for pretty much the majority of my life until I was hospitalized and going into my eighth grade year. And then that's when kind of everything started rolling into place. Yeah. Yeah. LYNDSAY SOPRANO (04:47.896) Growing pains. I got a growing pain for you, buddy. Angel Parker (04:52.248) Yeah, like, I hope that doctor, like, remembers me somehow and is now looking back and they're like, hmm, wow, look at her. Yeah. Yeah. Just a little. LYNDSAY SOPRANO (05:00.718) Those growing pains really turned out to be a real pain in the ass, didn't they, for everybody? LYNDSAY SOPRANO (05:08.44) So you end up, so you're in junior high, you're super active and you just start getting this pain. What was the, what did you start, what was like your biggest thing that popped out to you? I gotta go to the doctor, like not just go to the hospital because we know in fact, the episode before ours, I talked to an ER doctor specifically about how challenging it is for chronic pain people to go to the ER because you don't really get much out of it. And so we spoke a little bit about that, but. How what was that like for you as far as like going through your day to day basis and how that continued to get worse? Because obviously the hospital stays didn't I mean they did a little bit for you, but what was the scariest part? Like I think I've got something that scared me watching your diagnosis watching your episode that would make me go to the doctor when I hear from you. Angel Parker (05:59.386) I think one of my biggest things is just that how painful it was getting but it kept getting dismissed. So not only by the doctors but like by my parents and my family and just everyone around me. think that was just like the one of the scariest things is that my pain was just continuously getting worse and no one was taking me seriously and it kind of was just like, go take a bath. Oh, go take a nap or try a heating pad or just like all of the and I get it. Those are pain relieving measures. I'm not saying or discrediting them in any way. I have a heating pad literally right next to my bed right now. But like, I, I, think that was just one of the scariest things. And then like when I just knew there were times where I couldn't walk and I am LYNDSAY SOPRANO (06:46.599) You're a... Angel Parker (06:57.85) 13 years old and this should not be happening at 13. Like I'm trying to play sports and going into high school and my sister-in-law at the time was teaching me a new sport and it was just like all of these things and I was just like this isn't normal and so I think that was probably one of the scariest things when I knew it wasn't normal but no one was really listening to me. LYNDSAY SOPRANO (07:22.136) Yeah, I think not being heard is a huge fear that a lot of people, not just in the chronic pain department, but women, we specifically get just, yeah, yeah, yeah, right. You're hysteric, right? You know where hysterectomy came from. That word is hysteria because us women, we just can't keep our acts together here. We're just too emotional. It's like, give me a break. Somebody's got to on this planet. Angel Parker (07:44.344) Mm-hmm. LYNDSAY SOPRANO (07:46.702) But yeah, that part of that scariness, that being alone and not feeling that you're heard is super, super scary for me. And this was just as a watcher of it, was when you were talking about how your urine was like coffee grounds, that would have been like, I got to go to the doctor. And that was happening. That wasn't like a daily thing, right? What was your... Angel Parker (08:08.225) huh. LYNDSAY SOPRANO (08:13.911) What was your daily life like when it got to that point in the pain department? Angel Parker (08:19.13) Back then this is funny that we're talking about this. We actually talked about this at dinner last night with one of my best friends Back then it my day-to-day life looks so different. It was almost that I lived a double life almost like I lived a life with pain. But then I lived a life where I wasn't sleeping. I was in high school. I wasn't sleeping. I was going out. I was playing the sports. I was doing all of the things. But then sometimes I would end up in the hospital or I would it would be Angel's sick again. We don't really know or Angel's body. It would always be like Angel's legs are acting up. Angel's legs are acting up. That was like the storyline of Angel's life. The Angel's legs are acting up. So it was kind of weird. Like my day-to-day life didn't really, like wasn't truly impacted back then the way it is now. Back then I felt almost like a superhuman now that I'm looking back and I'm like, how did I manage everything that I was managing? And I wasn't getting hospitalized as much like. I don't, and I know as we age things get worse than everything, but I just, it's just oddly enough, like my day to day, it was so unpredictable back then. It's a little bit more predictable now with my body, but back then I just really was raw dogging it. Like I was just doing it. I was waking up and then. LYNDSAY SOPRANO (09:50.272) Angel Parker, ladies and gentlemen, that's something that would have come out of my mouth for sure. Raw dogging with Angel Parker. The show just took an interesting twist. Angel Parker (10:04.92) Yeah. LYNDSAY SOPRANO (10:05.496) See, this is why I waited for you. LYNDSAY SOPRANO (10:10.446) All right, raw dogger, but yeah, I totally get that because I look back and like we were talking about this, I don't know, a couple of weeks ago or something. And I was talking about how, man, I wish I was in the body that I was in six, seven, eight years ago where I thought my pain was high. I'm like, girl was a wimp in comparison to this girl now. And then it makes me think, what am I? And I had a total meltdown this weekend about this. Angel Parker (10:10.618) you Angel Parker (10:27.545) huh. LYNDSAY SOPRANO (10:37.614) because my pain level was so incredibly high. My feet were black and purple and it was very scary. And we were talking about how like, what's it gonna be like in another 10 years from now? Am I gonna look back at this weekend and go, that was excruciating, but now this is more excruciating. I don't wanna be in any more, excruciating more pain than what I meant. Like what? I mean, it's mind boggling. absolutely mind-boggling. So you talk about your toxic home and how mental health affects chronic pain, right? And we're gonna talk a little bit about that. But before we jump into that, wanna talk about, cause the people are gonna be wondering how the hell do I get on a Netflix documentary? Well, she's got a bad-ass bestie, not unlike myself, but her bestie Madison. So can you give, I wanna throw out a shout to Madison here today, okay? But this is a big one. Yeah. Angel Parker (11:37.914) Yeah, Madison is literally my right hand when it comes to my disease from, oh, I'm going to get emotional. I'm sorry. she really just grasped it. She has that, I was actually just listening to your episode with your honey. And he said something that resonated with me so much. And to be with someone who's chronically ill, you have to love them on such a deep level. It's like a depth, right? And that's Madison to me. So she just saw the struggle that I was consistently going in. This girl has spent numerous, numerous nights in the hospital with me. And she was over it, like I was. So she wrote a GoFundMe page to send me and my ex-boyfriend, Mac, who's in the documentary. Those two I will always speak highly on when it comes to my disorder because... She wrote this story online and to send us to UCLA because every doctor here in Vegas was like, go to UCLA, they'll diagnose you, go to UCLA. We don't know what to do for you here. And so she wrote a GoFundMe and we ended up going to UCLA. There was some problems with that regarding with my parents and stuff like that. But then finally, production team saw the story reached out to her and was like hey we're doing this and she kind of sent it to me like this is probably like a fluke like this is probably fake but look into it if you want like just totally joking and I was like sure and I like looked into it and I had a zoom meeting and I I texted her right after that meeting and I was like yo I think this is like for real like LYNDSAY SOPRANO (13:24.984) Yeah. Yeah. Angel Parker (13:35.514) And they weren't, they didn't tell me it was Netflix, they didn't tell me any of that at first. Like yeah, they were just kind of saying like this is what we're doing, that kind of thing, and then it was starting to come out. LYNDSAY SOPRANO (13:42.398) interesting. LYNDSAY SOPRANO (13:49.902) Yeah, I wonder if they were shopping it. Yeah. Angel Parker (13:51.938) I think that's what it kind of was, because they were still gathering. I was one of the first people they talked to, so they were still gathering everything. so then it kind of just took off from there, and yeah, I got diagnosed. LYNDSAY SOPRANO (14:06.786) What a blessing that is and so many things I want to talk about. Okay, so now that we're in the document, you get started. So talk to me about a little bit about the process of what the documentary, how that was for you being on film, being on camera all the time when you're talking about things, when you're in the hospital, when you're so incredibly vulnerable and you're crying and well, she'll never look like shit because she's like stupid, beautiful. Angel Parker (14:36.058) Help. LYNDSAY SOPRANO (14:36.524) when we're feeling like we look like complete utter shit, right? You know, our ponytails to the side, our makeup's all over the place, we don't have any on, we've got sits, whatever the hell. What was that like for you going through that process to the point of actually going to Italy where you ended up finding your diagnosis, which and everybody on this show knows that I'm moving to Italy because I love it there. This is just another feather in their cap. Angel Parker (14:40.548) Mm-hmm. Angel Parker (14:58.945) Yeah. Angel Parker (15:04.546) so I completely understand it. The documentary itself was, think, kind of... Looking back at it now, I think I was just kind of in shock the entire time. I didn't... it didn't really feel like my reality. I... like, I... everyone often says, like, I cry all the time. I cry every day. I cry over everything. But I didn't... I hardly cried in the documentary, like, at all, and everyone... LYNDSAY SOPRANO (15:33.451) I know. Angel Parker (15:34.432) And everyone thought that was crazy. They're like, Angel, how and I think it was just like that shock factor where I was just like, this is reality. And then it also was coming to like, I saw the comments on on social media, like, why doesn't she do this? Why doesn't she do that? Like the hate that I was receiving. And then so then I was just like, I opened a can of worms that I don't know if I'm strong enough for and then it's just like but then the loving support that I was getting on the backhand and I had to keep it a secret for quite some time. Yeah it didn't I got diagnosed in August of 2018 and it didn't come out until August of 2019 and so LYNDSAY SOPRANO (16:25.678) wow, so you could only keep that within your small little circle of people. Interesting. Angel Parker (16:30.138) Mm-hmm. Mm-hmm. Yeah, and so it was just there was and then the shock factor of having the diagnosis and just like the everyday I think it was it was just like a lot I was also in nursing school and working full-time and battling the disease so it was just like I think a lot on me all at once and Then like the shock factor of like oh in a couple months my whole life could be changing like I'm not I'm not sure like what I should be expecting or anything like that. So I don't know. It was. LYNDSAY SOPRANO (17:03.502) Well sure, and getting a diagnosis is actually kind of scary because it's like, okay, and I know it sounds counterintuitive, but I've been asked, actually by a guest on this show, I'll never forget, when she asked me, what are you so afraid of getting better? I'm like, well, because all I know is this now. My brain has completely changed. My. Angel Parker (17:08.238) Very. LYNDSAY SOPRANO (17:29.752) thought processes change, the speed of things that I can do change, what I can do in the morning, like you and I have talked about. Angel and Lindsay are not morning people, so don't call me, don't text me, don't talk to me, don't bug me until 10 a.m. Pacific Standard Time, okay? Because I'm a monster, because my whole brain has to process, how am I gonna live in this body for the rest of the day? How am I gonna do this? Angel Parker (17:38.938) Thank Angel Parker (17:45.658) You LYNDSAY SOPRANO (17:56.43) And I know that that's exhausting and emotional. And you and I talked about this on our meet and greet about how you and I tend to be busy bodies. So you're going to nursing school and going back to school and going back to school and going back to school and working like crazy and all of that is exactly what I do as well because it's distraction therapy for me. As long as I'm moving, I always say, if I don't use them, I'm going to lose them for my legs. But for me, it's just keeping busy until I absolutely crash and burn until I just And then I'm like, all right, we'll do that again tomorrow. Angel Parker (18:29.208) Yeah. LYNDSAY SOPRANO (18:31.374) So that makes sense that you kind of were like in shock, like a little zombie face going through all of it. Because when you did get your diagnosis, Mac, her boyfriend at the time, who went through a lot of that with you, he's like bawling and you're like, all right, so anyways, what's next guys? What's coming up next? What do we want for dinner? Does everybody feel like spaghetti or what? I mean, it was like such an interesting. Angel Parker (18:35.45) Mm-hmm. Angel Parker (18:49.975) Yeah. Angel Parker (18:53.816) Yeah. LYNDSAY SOPRANO (18:56.886) It was such an interesting response, but it makes sense the way that you explain it for sure. You talk about being dismissed in your family. And when you guys watch this episode with her, which you absolutely must have, in fact, watch the entire document, it's very well done. And you will cry, so get tissues. And if you don't, you're a monster and you should not be listening to this show. Angel Parker (19:16.408) you LYNDSAY SOPRANO (19:21.73) But we're talking about toxicity and being dismissed and not just in the healthcare system itself, but also being dismissed by family and how that part of it affects your mental health obviously affects theirs. Can you talk a little bit about that, how that truly has affected you not just during your younger years, but how as it was going through all of your diagnosis, obviously through the documentary and then also afterwards now. how you're still dealing with this toxic family life that you've had and how that's played into you not necessarily getting better. Angel Parker (19:58.584) Yeah, I think a lot of it, I'm actually in therapy for it, I'm working on it. Right? It's, I find myself still dismissing my disease to this day. It's, I lived a life of, how old was I? LYNDSAY SOPRANO (20:04.539) Ding ding, we all need to be in therapy people. Angel Parker (20:21.37) maybe like 23, 24, 24 years of not having a disease. I was sick but not really knowing so I lived the life that I wanted to live because I didn't have a label at that point and I it was easier to dismiss because I didn't have a diagnosis. It was just like oh Angel's legs are acting up or now it's Angel's entire body like that kind of thing. At a younger age it was the dismissal of like of the obligation and the sh- know my parents love me and I know they would do what they can in their capacity to help me, but there were times where I needed a voice and I didn't have one because I was such a kid and no one was that voice for me. And so I know now that my voice, it wasn't until like really Mac that I had a voice about my disease. He taught me. how to have that voice, how to kind of like, hey, you have to speak up about this. You have to fight for yourself because just growing up, it was just kind of, go take a bath, you'll be fine. go lay down, you'll be fine. Or I'm in the ER and my mom's huffing and puffing about the wait time and I'm sitting here in pain and it's, I'm like, I can't do anything about the wait time. Mom, like I... LYNDSAY SOPRANO (21:51.842) Now go home then. Angel Parker (21:53.722) Yeah, like I'll sit here by myself and yeah, there were a lot of times where I spent the night in the hospital by myself at a young age. That's what made me be a nurse. The nurses would stay with me. They really helped me through a lot of this. There was a time I was really, really sick and it just kept getting dismissed. At 19, they were threatening that I might be going on dialysis if I LYNDSAY SOPRANO (21:56.174) Get out of here. Angel Parker (22:22.894) kept going at the rate I was going and that terrified me. And I realized like, this is serious and I need to stop playing games. And that's kind of when Mac and I like really was like, okay, what do we gotta do? Like what, because like in the show, you'll hear my parents say like, whatever happened to like what we sent off to the University of Oregon. And it's kind of like, well, I was a kid, you were supposed to follow up on that. Like I don't. LYNDSAY SOPRANO (22:51.95) I'm like 13, bro Angel Parker (22:54.618) I don't even know how to search up the medical center that we use. Like, I don't know what I'm doing. And so that kind of mindset stuck with me for quite some time. like I said, like Mac and like Madison, once we started getting that diagnosis, it was almost like a goal at that point. But I think what the biggest misconception is too is, yeah, I have a diagnosis, but that doesn't mean I know how to LYNDSAY SOPRANO (23:00.574) Right. Yeah. Angel Parker (23:23.332) live with a diagnosis. I've accepted I am sick, I have a disease, I can't live a typical life. I know that. But adjusting my day to day has been very, very difficult for me personally. And I think that's the biggest misconception. And it's just like you get a label on you. And I think this is another problem with chronic illness too, is you get a label on you and people think you just follow like you fall into this certain category when chronic illness is so individualized like yeah we may all have it's under all one umbrella but it is so individualized the cpt2 or next to me may have it a little bit easier may have it a little bit harder than me there's so many other components that go into chronic illness versus just like for me everyone's like your diet fix it you'll be fine well no that's LYNDSAY SOPRANO (24:18.22) Yeah, if it's any consolation, I wanted to stab your dad watching the Watching the documentary, but I already told you this prior. I was so angry with him because he was so mean and that was on camera and so for me I What I'm like I was so angry with him and I to the point that every time he would come on top on the screen I would turn my head Angel Parker (24:27.448) Yeah. LYNDSAY SOPRANO (24:48.216) Cause I was so frustrated for you and your health and then also your mother's health and you know, it all just trickles down. And I'm not saying that it's not hard for parents that have kids that are ill, but the advocates that we have are you. And when you're a young little lady, you don't know what the hell you're supposed to be doing for yourself, with yourself. That is your job. Like if you're not into it, then get out of here and don't even, I don't even want to hear your voice in regards to it, you know? Because that part of it, talk about weighing on your mental health. I mean, I felt like I needed to go talk to my therapist after watching your dad for the little bit that was on there. And I feel bad for you and how you could have gotten better maybe sooner. You wouldn't have dismissed it. You would have paid more attention even now. You wanting to, you're like, oh, no, I'm dismissing it. I do the same thing. And it's something within ourselves that comes from childhood trauma. And ding ding, we all love childhood trauma, don't we guys? is one of the things that we love talking about here on this show, don't we? But those negative interactions constantly happening, how does that not wear and tear on your body, your pain, your soul, your heart, your mind, your everything? Of course it does. So then you add the mental health component to we're already living in pain all day long from the moment we wake up to the moment we kind of sleep, right? talk about having scary conversations with yourself. That in and of itself is challenging with mental health. And what are they doing? They're popping pills into our mouths. They're giving us things that make us even more crazy feeling. And I I certainly know that I had that experience and you have as well. What has been your experience from a mental health perspective over the past couple years since your diagnosis? How have you been doing and what are you doing to, I know you said you started going to therapy again, which we all need to do. We all have to do it. So we don't upon the news. What have you been doing from a mental health perspective to take care of you and take care of your soul food? Angel Parker (27:06.842) Thank Angel Parker (27:14.714) Um, that's actually like a good question. I realized my anxiety over the last couple years has skyrocketed. You wake up and you're like, what can I handle today? Am I going to be in pain today? Am I going to end up in the hospital tonight? I battle with really bad nausea, no appetite kind of. I don't know if it's the anxiety, the pain, all of it's together. I can go days without eating and be completely fine. Well, besides my disease acting up and falling into that, but like, yeah. LYNDSAY SOPRANO (27:54.062) Right. Besides all the other things that I'm doing wrong to my body by not eating. I call it, cause I'm nauseous all the time, but I puke all the time. So I call it pain puking. It's lovely. It's good stuff. That's good stuff. Angel Parker (28:03.128) Yeah, yeah. And that's how I kind of battle it. And that's what I'm like, I and then it's like, of course, I have a disease that soul we serve like, surrounds around diet. And then now I struggle with eating like, of course, like, of course, those two. LYNDSAY SOPRANO (28:17.655) Right, of course I do. Angel Parker (28:19.194) Okay, so my anxiety has been really really hot like I wake up I throw up I wake up and I'm it's to the point where it's here and I it's just really bad and so I did start medication recently for anxiety and that has helped I actually just finished like a month on it yesterday and it has severely helped I was very back and forth on it to get on the medication at all. I didn't I'm a nurse now, I didn't go the nurse practitioner route because I didn't want to put medications in people's mouths. I went the therapy route because I'm a talker, I like to talk things out. Let's do this instead. But I have to realize that sometimes balance is what's really important. And right now with my eating and my physical is not where I need to be. I need to at least get a kickstart with my mental so it can at least help my physical. And the thing is, it's... It's temporary. It doesn't have to be a lifelong thing. It's temporary. And so just like little things like that. Working two jobs, I've realized has me completely burnt out mentally and physically. So I'm like trying to navigate that. And that's the hard part is I'm sure. You've experienced it, being self-employed, the health insurance aspect of things. That's a whole nother nightmare. So it's just like a whirlwind of a lot of stress that causes a lot of pain at the end of the day. So it's just, I make sure I get my walks with my dog. I get outside. I am always outside in the sun as much as I possibly can be. I'm going to therapy, I'm taking my meds. LYNDSAY SOPRANO (30:09.174) I'm taking moments. I'm raw dogging all over Vegas. Angel Parker (30:10.434) I'm taking my meds every day. you know, I'm, I, and you know, I really do. I shouted out Madison, but my village, man, I, I know a lot of people don't have a village. Like I hands down and I will fight anyone who fights me on this. have the best village. No one can top my village. No one can top my people. Like, and this is my chosen family, not necessarily my blood family, like my friends that I've had since I was 11. Like, these are my people and they have seen me through every phase of this disease and loved me through every phase and I wouldn't, I seriously would not be alive if I did not have these people at all. Like, I owe my life to them and that's where the guilt comes in and I don't deserve this. I... I should push these people away and I don't want to impose in their life with my disease and my pain. Yeah, and I don't want to have them resent me or make me feel like an obligation when or your love turn into an obligation or your love turns into a caregiving act. And it's I don't want that. And that's probably one of like the LYNDSAY SOPRANO (31:17.166) I don't want to be a burden. LYNDSAY SOPRANO (31:30.766) Yeah. Angel Parker (31:34.756) biggest challenges I have mentally when it comes to this. LYNDSAY SOPRANO (31:39.586) Yeah, I identify with that because it is one of the things that men do and it's a good quality, but it drives us nuts, which is they want to solve our problems, right? I'm just like, I just want to talk about something really quick. And then there's like 17 different things that are suggested for me to do. And I'm like, I don't want to hear one of those 17 things. I just want somebody I can talk to right now about it. But within my village, and we might have to fight because my village is pretty Angel Parker (32:08.408) Hehehehehe LYNDSAY SOPRANO (32:09.122) freaking awesome to girlfriend. All right. You're taller than me though. So I don't know. I'll run you over in my wheelchair. No, but it's my village is pretty awesome too. call, have a something that I call my personal board of directors. So if there's like a big decision that I want to make in my life, I need to get, you know, a decent vote from my, personal board of directors. Like that's a good idea. Lindsay, you should do that. And obviously I can't do that for every decision, but for the big hitting ones like should I marry this dude after all these years or should I not? got an outstanding overwhelming vote for finally on that one. But and some were like a couple years ago, know, because it took a village to get through and he had to really think about whether he was in it with my body for the long haul and I had to do the same thing for him and his machine goss and so Angel Parker (32:46.04) Hehehehe LYNDSAY SOPRANO (33:06.67) living in pain as something that he married. know, he this, is the deal. Or I always like to say this is the meal. This is the meal. Like this is what you got. You know, this is you ordered. You can't send me back. I'm medium rare. Okay. I'm not going to get medium well for you. It's just, it's one of those things where if you don't have a village, I don't know how any people, how anybody gets through it. because like my dad is not my birth father, but he's been my stepfather since I was three. He's my dad, he's my people. He's far more of a parent to me than any of my real parents were. Not that my mom, she's great, I love you. She doesn't listen to the show. But anyway, it's when you have these phenomenal people in your life and you don't need 35 of them either guys, you need a decent group of people that understand you. that have your Lamaze bag that have your bag ready to go for when you're popping out the baby, you know, like that is what you've mentioned to me on meet and greet about Madison, how she's like, I'm ready to go. Let's go. We're having a baby. You know, and that is so important to have. And when you don't, can't imagine it's a lonely place when you live in pain, no matter which way you look at it. And if you don't have those people in your village and you need to find a different village, you need to go. You're not hanging out with the right people then because The people in your life are the most important part of all of this. And teaching them about the disease that you have, teaching them about what it's like. And I have a lot of people in my world that like, oh man, my leg is killing me. Oh my gosh, I'm so sorry. I don't mean to say that. I'm like, oh my God, I'm happy that you're in pain. It's fine. I'm like, good. Angel Parker (34:46.486) Yeah, yeah. Yeah. Tell me more. LYNDSAY SOPRANO (34:52.078) Tell me more about how you're dealing with human pain, because human pain is totally different than this pain. This is alien pain. I can't explain it. It's nuts. so I don't want anybody in my village or people that could be invited into the village, because you're invited then. I want them to understand that this is this is part of who we are as people. It is now who we are. And it's gross, but we can. Angel Parker (34:59.939) Yeah. LYNDSAY SOPRANO (35:20.366) Like I say, my line for my show is giving pain purpose. You're here today because you're giving what you've gone through purpose and meaning. And there are other people out there that are struggling with similar stuff. So what I want to do is real quick is I want to chit chat about what it is that you actually have in air quotes, because you're a little miss air quotes. You can't see her, but I can. CPT2, what the hell is this? Angel Parker (35:45.652) It is a genetic disorder. So both my parents are carriers of the recessive gene and I was the lucky one that out of my, three kids that they had, I was the one to get it. So my body does not digest fatty acids. It, for so how most people's body breaks down fats for energy, mine does not. It goes, I need carbs. That is what my body uses for energy. And when it does not have enough of that, it attacks my muscles and it breaks them down and it leaks out an enzyme and sends me into rhabdomyelosis, which is what causes organ failure and all of the fun stuff that comes with that. And that's why I get hospitalized for it is the rhabdo, technically. LYNDSAY SOPRANO (36:39.374) That's crazy. It's fatty acid. Like, that's a nut. And, um, so what do you eat? Angel Parker (36:42.882) Yeah. Angel Parker (36:49.562) I eat a lot of pastas, a lot of rice, a lot of fruits. I'm a big smoothie girl, especially with my nausea. My boyfriend now, Randall, he is, he's an anatomy teacher and he also, yeah, and he's also like a fitness coach. So he has been a blessing in disguise. Like he is so educated and like... LYNDSAY SOPRANO (37:06.317) Randall. Angel Parker (37:16.542) nutrition aspect too and I know I should be as well like this is my disease right but it's that's like a whole denial and everything right and so but like so he has even like helped me a lot try to transform like making little foods like he literally cooked chicken alfredo the other day but like made it to where it's not like super fat meaning it's more carbs and fats like things like that LYNDSAY SOPRANO (37:24.024) Short. Yes. LYNDSAY SOPRANO (37:40.558) That's so crazy because you know all of us like don't eat any carbs and this one's like eat carbs. Angel Parker (37:43.29) Yeah, exactly. Everyone's like, so you can just eat pizza non-stop? I'm like, yeah, technically I eat a lot of carbs. LYNDSAY SOPRANO (37:53.454) And you would never think that something so small could be so big in your life that could literally cause you to end up on a fucking documentary on Netflix about chasing a diagnosis because you lived in pain. Ends up being, I needed to eat more carbohydrates. It's mind boggling. Angel Parker (38:12.026) Yeah, and I said in the show, I'm like, I'm going to be pissed if it ended up just being my diet. that's what like that kind of circles back to, too. It's kind of like when you get a label, when you get a diagnosis, whether it's diabetes or this or that, it's like the symptoms or you have them. If you do this, you'll be better. But it's like, no, I have other triggers. If I don't sleep well, I'm triggered. If I exercise too much, I'm triggered. Oh, I'm sick. LYNDSAY SOPRANO (38:17.684) I know. Angel Parker (38:41.39) I'm a nurse, I get sick, I'm around sickness all the time. I also am around children all the time. Okay, so I'm sick, I'm down bad. I, we all know the lovely stress factor and I am a very stressful person. I'm an empath, I carry everything. I'm also a therapist, so I put all that on. It's a lot. And so my stress level is high. And so people, think like they see like, well, if you just eat, like, you'll be fixed. And it's like, if I'll... No. Yeah. LYNDSAY SOPRANO (39:12.622) If only if only I could just jam carbs in my face all day long. I would be good to go LYNDSAY SOPRANO (39:22.926) Oh my God, it's freaking nuts man. The littlest of things that our body, how our bodies work. I mean, our body is such an intricate and special little system and we're all different. That's why I don't like being bucketed into, well, this is what you've got. So these are the things that you're supposed to do. I'm like, well, actually if you looked at all of my allergy and all of my gastro tests and all of this and all the functional medicine, I'm not supposed to eat any of those things because I'm allergic to that. or they cause inflammation in my body or this, that and the other. And so if you don't, you're not gonna find a regular doctor guys that's gonna do what you're gonna be able to do. So you have to do it. That's it. You have to become your own advocate. We talk about this all the time. You want to get the answers, you have to find them. That's it. That's just what it comes down to. And so with you in the documentary and getting the diagnosis, so you've gone to UCLA, you've gone back and forth, you've been in Vegas, you've done all the tests, all the things, all the hospitalizations, you end up in Tarino, Italia. And I would like to talk really quick about what that experience, how did that even happen and what that experience was like for you from a healthcare perspective over there. Angel Parker (40:35.19) It was beautiful. think the entire process like hands down Dr. Sanders, like the entire process is such a beautiful concept. Allowing the world to come together, like the world, not just USA, like the world to come together and just unite on a sickness. I think it's just a beautiful, it's something you're doing. I was gonna mention it earlier too, it's, you're giving a purpose, you're giving pain a purpose like you said and I always talk about I want to be more vocal on my social medias and everything like that because people don't have the villages that me and you have and it is terrifying and it is scary and it is lonely and so having that crowd sourcing like all these people are part of my village now maybe I don't know but just even the little DMs that I get or just the little messages, the love, the comments that I get. Like I got a message literally two days ago from a doctor in a different country. Like it's things like that. It's such a beautiful concept. And so just talking from people all over the States, I talked to someone in Uruguay and he was telling me about his experience with rhabdomyelosis and just hearing that people can actually understand and connect is such a beautiful thing. And so going over to Italy, I have the power of the people. Like I am such a community person. Like I want to help as many people as I can with this story, with our story, with every chronically ill. And that's literally what Marta and the doctors did out there. And it was, I walked into that hospital and you would think that, I know it was, I had cameras and it was a little different, but behind the scenes, like they are true to who they are on the camera. They are in, LYNDSAY SOPRANO (42:03.842) Yes. Angel Parker (42:27.926) medicine because they are in medicine. They want to help. They want to... they care for you like it's family and I think that like as I was becoming a nurse like I'm getting emotional again as I was becoming a nurse like I think that's what I carried so much with me is that there's so much so much goes in healthcare politics and this and that and finances and At the end of the day, it's that human connection that really makes a medical provider a medical provider. And that is what I noticed the biggest thing with their healthcare. They didn't ask me for my, for a payment. They didn't ask me for my, I don't even think they asked me for my ID. Yeah, like they. LYNDSAY SOPRANO (43:07.874) They can't take payment. When I was in the ER in Italy after my wedding because I got really sick because I'm always sick, and I went and we were like, where do we pay? like, even if we had a bill for you, we have no way to take any form of payment from you. I was in, within the ER, within three minutes, I had an IV in my arm and I was on a breathing treatment. Bam. I would have been here in the States when that happened. I would have been sitting in the emergency room for eight hours, maybe. I don't even know. But it's just horrific. Angel Parker (43:43.34) It's actually really frustrating to know that I'm in debt to the I'm in zero debt to the country that diagnosed me, but I am in hundreds and thousands of debt to the country that did nothing but pump me with morphine and diluted. So, and give me nothing. so it's very, very frustrating carrying that. And so that's why I'm always just so big on like, I don't know, there's just so much that goes into it. Even as a nurse that goes into it during COVID and the politics that went into that. Like there was just so much that it's just the human connection I think really gets lacked a lot of the time. And that's where being chronically ill really just can really be a negative thing a lot of the time. LYNDSAY SOPRANO (44:31.16) Yeah, I mean, they just roll you into the closet and pretend that you're not there. And then we're like, here's your bill. We did absolutely nothing for you. But thanks for sharing. Thanks for joining us today. We appreciate it. Your bandaid is two hundred thousand dollars. Angel Parker (44:35.916) Yeah, call you. Yeah. Yeah. Yeah, I labeled you a med seeker, a drug addict, a hypo-conjured, but here's your bill. Yeah. LYNDSAY SOPRANO (44:52.524) Yeah, exactly. remember, like I make sure when you're talking about med seeker, I remember every single time I go into any doctor or any nurse practitioner, any hospital setting, and the first thing I say is, I do not take pain pills, period. Don't give them to me. You can give me something here, but do not send me home with them. I will not take them and I don't want them. So don't give them to me. And it's in my medical record because of just that. Because I don't want to be seen as a pill seeker at all, because I'm not. I'm like, don't give me that crap. I don't want that. I want something that's a little bit better and healthier for my bod. And unfortunately, I can't call my acupuncturists at two o'clock in the morning, you know? And so those people that we need on an ambulance for are healers. We need ER for healers. that healers are at, right? Like emergency room for people like us for functional medicine because the regular ER is just a joke. Ugh, certainly here. And I'm sorry to hear about all the medical debt that you have because I know that's challenging and I'm sure you've got student loans too because you did nursing school and your masters and all of that. So Randall, congratulations. Welcome to her village. Angel Parker (46:11.019) Yeah. Yeah. Yeah, no, he's been a great addition. He's on I mean, the show is what my disease is what brought him to me. So he's he's a really big reminder of that anytime I bring that up. He's just like, Angel, I fell in love with you starting with this and I'm like, right. All right. So yeah. LYNDSAY SOPRANO (46:24.578) Right. LYNDSAY SOPRANO (46:33.022) I love that for everybody. I do. Especially you. And my listeners too, because you give a lot of hope here. And I mean, at end of the day, that's really what we've got to do. We keep trucking. I mean, that's the only option that we have otherwise is jumping off a bridge. And God knows we've had those days. Just don't join me, Angel. We're not joining each other on that. You just call me if you're thinking about jumping off a bridge and you know that. Angel Parker (46:51.65) Yeah, probably a lot more. Angel Parker (46:57.754) Yeah. Yeah. LYNDSAY SOPRANO (47:00.93) Well, before we jam out of here, because obviously you and I can chitchat for the rest of our lives here. Is there anything that you want to leave my listeners, our listeners with? Because this is my show, it's our show. Anything you'd like to leave our listeners with before we hit the dusty trail here? Angel Parker (47:05.369) Thank Angel Parker (47:15.354) Um, yeah, I will personally say I think it's amazing what you're doing here, right? It's a social media. Everything is such a power. It's a power of people power of pain. It's it's a beautiful thing. And so I know this is going to sound so cliche, but when you're sick or you're chronically ill, you're chronically in pain or you're finding a diagnosis, like you're just not alone and you don't have to be alone anymore. Like go online. And I know that sounds so scary. And you can look me up and my entire medical record is on the web. So I get it. It's the vulnerability. It's the shame that also comes with being sick. The lifestyle adjustment, everything, but you're not alone. And whether it's a conversation over a message or we end up, have a soul sister in Texas. I've never met her. I think she's 50 something. She is my, and she's a CPT tour and she is my, I hold her so. close to my heart and I met her through this show. And so that's what my biggest thing is. It's just that like, you're just not alone and you may not have the village that you need, but you can create it. You can't. You don't have to stay in your circumstances. I didn't, I grew out of it and I created the people I needed and it's the best thing in the world. You can do it too. LYNDSAY SOPRANO (48:31.47) Absolutely, you can't, if you're sitting on your couch and all you're doing is watching Netflix, diagnosis, you need watch Diagnosis. That's all you're doing and you're feeling sorry for yourself. You're not being proactive, then continue to feel sorry for yourself. But if you're out there and you're doing what Angel and Lindsay are doing all day, which is kicking ass and taking some names, even through the wreckage that is our body, Diagnosis or not, you still have to keep fighting. And it doesn't mean that it's 100 % better. It means that we just now know the things we should probably do a little bit better that would make this a little bit easier. But are we healed? We are not. But we're healing together. And that's the whole point of being here today on the Game Podcast. So thanks again for being here and fucking finally. Angel Parker (49:18.618) Yes, thank you! I love it! LYNDSAY SOPRANO (49:21.666) We did it and I'm proud of you for sticking up for yourself with your family and your parents and making your village even stronger and more wonderful than it has ever been. And I'm proud to hear that you do have that because I'd be done as well if it wasn't for my village. So, and you guys know who you are. So thank you so very much, my sweet P. You can find her on Instagram and TikTok. She's got a couple different handles. I'll put them in show notes. I'll put them in social media. So you'll have her. Angel Parker (49:39.684) Yeah. Thank you. LYNDSAY SOPRANO (49:50.542) Angel, thank you so much again for spending this time with us. I really appreciate it. Angel Parker (49:54.83) Thank you for having me, I loved every second. LYNDSAY SOPRANO (49:57.58) Well, thank you so much. Me too. You are exclusively invited to share this incredible village of carbohydrate eaters, VIP pain journey together. Let's get to the heart of how to kill with you by my side. Please follow the pain game podcast wherever you digest your podcast content. We will be there. Visit us at the pain game podcast.com and follow us on all the socials. Thanks for listening. My little VIPs catch you on the other side.