What do you do when you know something is wrong with your body, but every test comes back "normal" and no one seems to be listening? In this powerful episode of PCOS Unfiltered, Lindsie sits down with filmmaker and storyteller Sophia Reamsnyder for part two, to share her remarkable journey through PCOS, infertility, multiple autoimmune diseases, repeated hospitalizations, and years of fighting to be heard by the healthcare system. Sophia opens up about the emotional and physical toll of navigating complex chronic illness, the importance of becoming your own health advocate, and how learning to organize her symptoms, ask better questions, and trust her instincts ultimately changed the course of her health. Together, Lindsie and Sophia discuss everything from abnormal menstrual bleeding and autoimmune disease to nutrition, movement, red light therapy, vitamin D, and the mindset shifts that helped Sophia move from surviving to thriving. If you've ever felt dismissed by a healthcare provider, struggled to find answers, or questioned whether your symptoms were "all in your head," this conversation will remind you that your body is always communicating, and you deserve to be heard.
Listening is a great place to start, but lasting change happens when you begin putting these ideas into practice.
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This week, choose one symptom your body has been trying to tell you about...something you've ignored, brushed off, or accepted as "normal."
Then take one small step to better understand it.
That could mean:
Remember, advocating for yourself doesn't mean you don't trust your healthcare team. It means you're an active partner in your care.
Sophia is the founder of Reamsnyder Media, a boutique production company creating documentaries and visual storytelling projects. She is also currently writing a book about navigating chronic illness while continuing to pursue creativity and purpose.
Please take a moment to:
Remember:
Your body is always communicating. Stay curious. Keep asking questions. And never stop advocating for yourself.
⚠️ Podcast Disclaimer
This podcast is for informational and educational purposes only and is not intended as medical advice. Always consult with a qualified healthcare professional before making any changes to your health routine.
(0:00) Research the heck out of whatever you think is going on and have it all in a way that is easy (0:08) for you to explain to your doctor. If you're going from point A to point Z, back to point B, (0:14) to point N, it's going to be very hard for your doctor to follow that. But if you can have a (0:20) chronological timeline of events or of symptoms that you have, that will help them.Along that (0:28) same piece of advice, if your doctor is not listening, get a new one. Have you ever felt (0:35) like you knew something was wrong with your body, but no one seemed to believe you? (0:40) Welcome back to PCOS Unfiltered. I'm your host, Lindsie, nurse, health and nutrition coach, (0:46) body wisdom guide, and author of Healing Beyond the Diagnosis.In today's episode, (0:50) I'm joined by Sophia Reamsnyder, whose health journey began with painful periods, fertility (0:55) struggles, and eventually a PCOS diagnosis, but quickly turned into years of mysterious symptoms, (1:01) repeated hospitalizations, multiple autoimmune diseases, and countless moments of being (1:06) dismissed by the healthcare system. What I love most about this conversation isn't just the (1:11) diagnosis, it's the resilience. Sophia shares how she learned how to become her own advocate, (1:18) research the science, ask better questions, and rebuild trust with her body after years of
(1:23) uncertainty.Whether you're navigating PCOS, autoimmune disease, chronic inflammation, or (1:29) simply searching for answers that seem impossible to find, this episode is a powerful reminder (1:33) that you deserve to be heard, your symptoms matter, and your body is always communicating with you. (1:39) Now, as always, this podcast is intended for educational and informational purposes only (1:44) and should not be considered medical advice. Please be sure to consult your healthcare provider (1:48) before making any changes to your diet, exercise, or treatment plan.(1:52) Let's get into it. Here is my conversation with Sophia Reimsnyder. (2:02) So you had, you know, you obviously have, you have twins now.(2:08) Yeah, kind of, you know, what was that experience like? Was there anything after like when you (2:16) started having, you know, the autoimmune issues, and even like after your pregnancy and everything (2:22) that you were finding reproductive wise or residual wise from any of that? (2:27) No, really, it was, it was kind of a strange shift. And it's something that I talked to my, (2:33) my OB about is after I had my twins, there was a period in time where I didn't have any migraines. (2:41) And it was a hormonal shift.And it wasn't until almost, I would say probably about 10 years later (2:52) that I had any kind of, I guess you could say unusual period symptoms, not that any of them (3:01) are usual or typical. But I had an instance of like, I passed a really, really large clot.
(3:10) It was like softball size.But then it didn't happen again for a while. But then it did happen (3:17) again. And I went to a new female doctor.And it started on the process of medications and (3:27) no real resolution. And so I would have these instances of bleeding, bleeding, bleeding, (3:34) it would stop. I never really had a true period over like the course of six years.It was all (3:40) just kind of wacky. And then when the autoimmune stuff started, I actually didn't have a period (3:47) for two years. And I thought that I was actually going to go through menopause because I was like, (3:53) I was kind of a little bit like, hooray, you know, it's time to know more of that.(3:59) And then it came back. And it was a horrible experience. I was actually working on a (4:09) surprise engagement.And we were almost done with the session. And I just remember this gush. And I (4:17) was like, I just missed my pants like, what is going on here.And so I excused myself to the (4:28) crime scene. I mean, there was just so much blood. And thankfully, I was wearing black leggings.And (4:35) so I was able to go out and kind of finish the session. And so I made a follow up appointment (4:41) with the doctor. And they're like, well, maybe you need to try ablation or birth control or an IUD.(4:48) And I'm like, listen, I'm not having any more kids. Like, what else can we do to make this (4:53) more permanent? I don't want to have to. My big fear was I have all this travel for work that, (5:00) you know, one of these creepy things that happens to me, it's going to happen while I'm there.(5:05) And that's exactly what happened. But I had like a really bad clotting. And it was like, (5:15) fistfuls of clots while I was at an airport.And I just remember laying on the bathroom ground
(5:21) thinking, gross, first of all, because I'm laying on an airport floor. But then I was like, (5:30) oh my god, am I going to bleed to death here? Like, what, what is going to happen? And that (5:36) was actually just in this past September. And when I got back, I went to my PCP, because she is now (5:43) my hero.When I tell her something wrong, and I tell her who I want to see, she's like, let's do (5:48) it. Well, I came to her this time with a little bit of a different request. I was like, who would (5:54) you recommend that I go to see for a female doctor? Like who is going to listen to me? You know, (6:01) she has lots of people that she could refer to.And so she referred me to the specialist. And I (6:07) had some imaging done. And I go in to see the specialist during the first appointment.And she, (6:15) she turns to me and she's like, listen, I don't agree with the report on your scans. She's like, (6:22) you have, and I can't say it properly, amendosis, the opposite of endometriosis. (6:29) And she's like, you can see it here, you can clearly see it on this scan.And they said that (6:34) there's nothing wrong with you. And I was like, okay, that's cool. Well, thank you for standing (6:38) up for me.And so she, she gave me all my options. And I said to her, in your honest opinion, if you (6:47) were me, what would you do? And without hesitation, she's like, I would take it out. I was like, cool, (6:54) let's do it.Because again, I went in there knowing what I wanted. That's, that's the outcome that I (7:01) want. And so she was like, okay, let's get you on the schedule.And she's like, but before that, (7:07) I really think that we should do, and I'm going to use her words, a deep dive into your cervix
(7:14) to make sure that there's no kind of cancer that would cause like an even more painful procedure (7:21) later on. And I was like, okay, I'm down with that. That's, that's workable.The procedure itself was, (7:28) again, that medical enigma thing. They, they used a lidocaine to numb me up down there, (7:36) except it like numbed my brain and my face and my ears up. And I remember laying there, (7:43) and they're talking, and I'm like, what language are you guys talking right now? And then they're (7:49) still talking.And my ears just started to ring like really loud to the point where I couldn't (7:54) hear anything. And I just looked up at him. And I'm like, when you guys are done with what you're (7:59) doing down there, can you please go find my husband because I can't hear anything you're (8:03) saying? Oh, my gosh.And it was just a really bad reaction to the lidocaine. And it, you know, (8:12) it eventually went away. And then I had the surgery at the beginning of this year, and I feel (8:17) phenomenally better.You know, it's out, and I'm not having those issues. And it feels great. (8:24) Yeah.Oh, my gosh. Well, yeah, I mean, again, you just, you know, you knew like you did the (8:31) research, you were prepared. Yeah, for all of it, you know, even if that was considered like worst (8:37) case scenario, you were, you know, you were prepared for that.So I love that. What kind of
(8:45) keeps you going now? You know, I mean, I'm sure you know, you're what, like 95% in remission or (8:53) something you want to say? Yeah, yeah, it's something crazy, like 95% remission. There, I (9:00) still have some issues with the bowel disease that I'm dealing with.But actually, my doctor (9:07) suggested a medication. Again, I did the research beforehand. And it has, it is actually put my (9:15) psoriatic arthritis completely into remission.And the fact that again, excuse my language, (9:22) I'm not shitting my pants every day is a huge step forward. So that's really good. But what keeps me (9:30) going is, is honestly, it's it's my family and my work.My, my mom committed suicide (9:40) quite a few years ago, she was very ill. And she was she was at her breaking point. (9:47) But I can't imagine leaving my kids in that way.And so no matter how sick I'll get in the future, (9:58) because right now there's not a cure for anything that I have. It's all (10:02) preventative measures. There, there could be a time in the future where my medication (10:07) stops working and that I go into that really bad place again.But even when I was in that place, (10:14) it was always, I want to see my kids do this. I want to see them do this. Except for now, (10:21) it's changed from not only do I want to see my kids do this, I want to finish that.And
(10:26) I want to do that. And so that's what keeps me going. The thought of doing all these things, (10:33) and maybe changing the world just a little bit.(10:38) Love it. I mean, we can go a little, little deeper, if you don't mind. But do you think (10:44) that trauma from you know, what happened with your mom like affected, you know, or triggered (10:49) anything in any way? No, I don't think so.Because that was, that was like two years before the (10:57) onset of everything. Quite honestly, in my research, again, in my science brain, it was, (11:08) there were some things that I, I could see in the past stomach issues, stuff like that. (11:14) But I never really had joint pain or skin issues.In fact, I didn't even really, I was very blessed (11:20) as a teenager, I didn't have sits, I didn't have pimples, I didn't have anything like that. (11:25) It was actually, I believe, a combination of the COVID shot, having that ACDF neck surgery, (11:35) and the heat exhaustion from the beach. It was just like this perfect storm that collected (11:42) together and my body was like, well, this is a bomb, let's explode.And that's exactly what
(11:48) happened. Yeah. So have you done much research on like nervous, the nervous system? And (11:54) I've done a little bit.I'm actually really interested. There has been some research that's (12:02) come out recently about autoimmune conditions that can be treated by Gosh, what was it that I just (12:11) saw recently? There was some kind of stem cell research that they're doing. And then there's, (12:19) I have it all on my phone somewhere, but there's something that they're looking at that could (12:25) potentially eradicate inflammatory autoimmune diseases.That also ties into, I think it was (12:34) dementia or Alzheimer's that I was reading about. And so I look into stuff as I see it. (12:42) Anytime an idea crosses my mind, or even there's a tickle on Facebook, I'm like, (12:48) could that be good for me? One of the things that we had no idea could be so beneficial for the skin (12:55) condition portion of it is actually vitamin D. And with our harsh winters, well, not this year so (13:02) much, but usually our harsh, cold winters here in Colorado, my psoriasis, I'll have an outbreak.(13:09) Excuse me. And I found that by going to the tanning booth a couple of times a week during
(13:16) the winter time, it will actually stop my skin from progressing to the outbreak stage. (13:23) That's interesting.Oh my gosh. And when I spend time in the Mediterranean, I have zero issues. (13:30) Yeah.I need to move there. (13:35) And I was going to say, I'm sure some people could argue like tanning bed, (13:39) you know, that's bad, blah, blah, blah. But like, yeah.But I feel like if you know the risks, (13:45) you know, of risks and benefits of either or, right. I mean, yeah. Then you're just making (13:51) that informed choice.And definitely if it's helping, it's helping. Yeah. (13:57) Oh, it's definitely helpful.And the other thing that helps too is a red light therapy. (14:02) Oh yeah. However, it will only work on my face because you need the industrial (14:14) strength.And the one that we have is what you can buy online. And so it's not, (14:19) uh, it doesn't have enough power to penetrate the thicker skin. So when I have the outbreaks (14:28) on my eyes and my nose and my face, I will just stick it right in front of our red light lamp.(14:33) Yeah. And it, it, it clears it up. It really does.Oh, that's awesome. Yeah. I've actually (14:38) learned a little bit about some of that recently too.Yeah. There's definitely a quality of like (14:42) just the red light bulbs versus like, you know, there's panels and just, (14:46) yeah, the, it can be a big investment, but, um, I mean, there's also like, I know here in Florida, (14:52) there's places where you can go to, to, you know, to just go into, to do it that way too. Yeah.(15:00) Planet fitness, they have a red light and a tanning. And that's what I do during the (15:05) winter time is we up my membership and I utilize that portion during that cold time. (15:12) Yeah.Oh my gosh. That's awesome. Um, so for anybody that's listening that, you know,
(15:21) feels like they are so frustrated with their doctor and they are getting misdiagnosed and not, (15:25) not feeling heard.What's one piece of advice that you would, what would you tell them? (15:32) Um, research, um, that is huge research the heck out of whatever you think is going on (15:38) and have it all in a way that is easy for you to explain to your doctor. If you're going from (15:46) point A to point Z back to point B to point N, it's going to be very hard for your doctor to (15:52) follow that. But if you can have a chronological timeline of events or of symptoms that you have, (15:59) that will help them.Um, along that same piece of advice, if your doctor is not listening, (16:06) get a new one point blank. If they are not listening, they are not for you. And a good (16:14) friend of mine told me once that you are not for everyone.So that means everyone is not for you. (16:19) It is okay to switch doctors. Yeah.Yeah. That's true. I mean, I've even had, (16:25) you know, fellow health coaches that do something very similar to what I do, you know? And I'm like, (16:31) that's because I may not be everybody's cup of tea, you know? So like, I want to, I want people (16:36) to know, you know, what else is out there.But, but yeah, you may not, you just may not get along (16:41) with your, you know, with your doctor. There might be some bad energy there. Like that's okay.And (16:47) then especially if they're not listening to you on top of it, then yeah, like you said, it's time
(16:51) to move on. I said that before to people. And so I love hearing it from other people that have lived (16:57) through it as well.Why do you think that, you know, some of these conditions don't get the (17:04) attention that, that they need and maybe deserve, you know, PCOS and even just like, I don't, (17:11) I don't think I've heard of all these different types of, you know, psoriasis. Like, why do you (17:16) think there isn't much attention on these? Because they're not as sexy. I know that (17:23) sounds crazy.And, and I know it's horrible to say that about stuff like, you know, cancer and, (17:30) you know, other conditions, but those are the sexy buzzwords. You bring up gutate psoriasis (17:36) and everybody's kind of like, Oh, what is that? Is that contagious? Like, you know, people, (17:42) they'll see cancer patients and yes, they look sick, but not for a second. Do they think you're (17:48) contagious? When you walk in and literally your skin is peeling off your body and it's just kind (17:54) of sticking out in weird angles.People look at you and they're like, what in the actual, (18:00) it's a very, very different. And it's because they're not as sexy as some of the other ones. (18:08) And hopefully by telling stories like these, other people will not feel so alone and it will (18:16) maybe make them a little bit more attractive.Yeah. In your research too, did you find it really (18:21) hard to find the research on certain things versus others? Yes. Yes.It was very hard to actually tie (18:32) the psoriasis to the tonsillitis. I had to actually, for my own self to believe my research,
(18:41) I had to find at least 10 articles that said, yes, this is the case. And it was really hard (18:48) to find those articles that were related to adults.You'll see that a lot in children, (18:55) but not a lot in adults. And so that's where it became tricky. I was like, well, (19:00) I've got the onset, but I'm not a child.So I had to really make sure this is really what it is. (19:07) Yeah. Yeah.Did they end up confirming the Kawasaki? (19:11) Oh no, no. Okay. Because there's no, (19:16) there's no exact diagnostic for it.I had enough of the criteria that they were comfortable, (19:23) comfortable to say that's what it was. And when I wasn't getting better, that's when I was like, (19:30) this is not what it is, you guys. And that was actually one of the big fights with the insurance (19:38) company.When the doctors wanted to do the IVIG infusions, they were like, she doesn't have enough (19:45) of the Kawasaki criteria to meet this. But they ended up pushing it through and it helped. (19:55) The IVIG helped, but it didn't help.I felt a little bit better for a couple of weeks, (20:01) but not for the amount of time that it should have. And that was a really good indication of (20:07) this is not what this is. Yeah.Yeah. As we kind of start wrapping up, (20:14) if someone's at the very beginning of their journey, probably similar, right? Overwhelmed, (20:19) confused, just feeling like they're not heard. I mean, if you want to give three steps or
(20:26) two steps, what's something they could do right now? (20:31) Cry.Get all that useless emotion out so that then you can focus. Cry and then focus your energy on (20:41) either trying to find answers yourself or trying to find somebody that will help you find answers. (20:48) And that's exactly what I would recommend to anybody.Sitting there those first few months, (20:54) really not feeling it, not accepting what was going on. I think really kind of delayed the (21:02) process for me. So get those emotions out.I love that. Yeah. Because we, we try to just, (21:09) yeah, keep it in.Right. I think especially if you have a family, you know, yeah, but you're (21:15) off just releasing that. And then like you said, you know, moving on to what you need to focus on.(21:20) So how do you approach your health today? I mean, you said, you know, you're still on some of the (21:28) medications and stuff, right. But you know, what, what's different in your approach today (21:33) with your health? Well, my approach now is really body first. So I've been, you know, on, (21:44) on the weight loss track to really try to lessen a lot of the stress on my body.(21:50) And it's, it was really this, this whole mind shift that kind of had to happen (21:57) two years ago when they told me that I had gout, which I was, I can't believe I actually said this
(22:04) to the doctor, but I was like, isn't that some King Henry shit? Because in my mind, I was like, (22:08) who still gets gout, especially, you know, at my age in this. And so I was completely (22:14) blown away by that. And it, it severely impacted how I was eating before.And that goes back to (22:21) that. Oh, I probably wasn't treating my body. Right.But, you know, I had to cut out the (22:26) processed sugars and a lot of the gluten and a lot of the red meat, and I'll still have that stuff. (22:34) I'm going to admit it. I will.I am, I am addicted to Coke, not, not the sniff kind, (22:40) the drink kind. I wanted to clarify that. And so that was, that was really the first shift was (22:49) let's, let's stop thinking about food in that way.And let's think about it as like fueling my body (22:57) and stuff like that. And then I turned that into, okay, what movement does my body need (23:05) in order to keep moving? And that's been something that we found with the psoriatic arthritis is (23:11) what's in motion stays in motion. When I'm moving, I don't feel the pain versus when I stop, (23:16) that's when everything kind of comes back.And so I really try to focus on those two before the (23:24) doctor. But obviously not having a doctor is never going to be in my cards. I'm always going (23:30) to have all the ologists on my, my directory, but we've gotten to the point now where like, I'm, (23:39) I'm almost out of my cardiologist office and that would be amazing, but it's, it's just kind of,
(23:44) you know, weeding out the stuff that doesn't need to be there anymore.And I carry that same thing (23:51) back to the medications. Every few months I will take a look at everything and I'll be like, (23:57) do I really need everything that's in this bag? Is this really doing anything to help my body move (24:03) forward? And if it's not, I have a serious conversation with my doctor and I'm like, (24:07) do I really need to be honest anymore? And so it always comes back to body first. I mean, (24:13) that's, it's been a hard shift, but it's been a good one.Yeah. Yeah. I've done an episode with (24:18) somebody recently.Yeah. I mean, very similar, you know, just asking your body like every day, (24:23) like, you know, what, what, what do I need today? So sure. If, if you like your, you know, your soda, (24:30) but like also making sure that you're getting in those nutrients and asking what your body (24:35) truly needs.So you can still enjoy that because then, you know, if not having is going to stress (24:39) you out more, then go for it. You know, right. You know, movement.Yeah. I mean, whatever that (24:46) might be, just kind of checking in with your body daily. And then yes, doing a big check-in, (24:51) like you said, with medications and, and just where everything is at, you know,
(24:54) maybe monthly or quarterly or whatever that looks like for you.So, yeah, I love that. (25:00) Uh, what's one truth about healing that most people aren't ready to hear, but maybe they need (25:05) to. It's hard.It's really hard. Um, there, there are still even days where I'll wake up and I'll be (25:16) like, Oh, I did not feel good today. And I'll, I have to remind myself, but you feel better than a (25:25) year ago.So everything is hard. You just have to choose your heart. Yeah.And, and that's kind of (25:35) what, what I've carried forward through this is, you know, it hurts to heal, but it's worth it. (25:42) Ah, that's a good way to wrap it up. (25:47) Love it.Um, so yeah, I mean, the final question is where can people find you? What are you working (25:53) on now? If you want to share what you have in the works and how can they find you and connect with (25:58) you? Absolutely. Um, well, uh, my company Reem Snyder media, uh, we are a boutique production (26:04) company and we're on all the social medias. Uh, you can find us everywhere.And, uh, right now,
(26:11) uh, I'm actually in the query stage for my new book, which I'm really, really excited about, (26:17) which is about this whole journey. Um, and about, uh, learning to create through the hard parts (26:27) of your life. So just because I got sick, it doesn't mean that I stopped my life.And that's (26:33) what I want to share with people is just because illness may mean an ending to something. It doesn't (26:40) mean that it's an overall ending to your life. Um, and then we have a few documentaries in (26:47) post-production about invertebrates like tarantulas and bees, um, and, uh, one about (26:54) social injustice, uh, in Puerto Rico.So that's a very exciting stuff coming up for the future. (27:02) Amazing. Oh my gosh.Thank you so, so much, uh, for, you know, sharing your story, (27:08) being vulnerable with us. Um, I, I mean, I, I think so many listeners just can benefit from, (27:15) from hearing, you know, everything you've gone through and I hope they, there were some great (27:18) takeaways. So I do hope they were listening very carefully, especially that last piece about (27:23) choosing your heart, because I think that just sums it all up.So thank you so, so much. Thank (27:29) you so much for having me. I hope today's conversation reminds you that healing isn't (27:35) always about finding one perfect diagnosis or one perfect doctor.Sometimes it's about persistence.
(27:42) Sometimes it's about asking one more question, getting another opinion and learning to trust (27:46) yourself just as much as the experts around you. Sophia shared so many incredible takeaways today, (27:52) but the one that really stuck with me is this.Healing is hard, but you get to choose your heart. (27:57) You can stay stuck in frustration or you can take that next step toward understanding your body and (28:02) advocating for the care you deserve. Whether you're living with PCOS, autoimmune disease, (28:08) chronic inflammation, or another complex health condition.I hope this episode encourages you (28:12) to stay curious, keep asking questions, and never stop listening to what your body is trying to (28:17) tell you. If you found this episode helpful, I'd love for you to share it with someone who needs (28:21) to hear it, leave a review and subscribe so we can continue bringing these conversations to more (28:26) women around the world. Thank you so much for listening.I'm sending you so much love and I'll (28:31) see you on the next episode of PCOS Unfiltered. Nourish. Heal.Thrive.