Rita's Story: All in Her Head

Summary

Podcast Summary: "Rita's Story: All in Her Head"

Title: Rita's Story: All in Her Head
Host: Soft Skills Media
Hosts: Dr. Erin Nance and Anna O’Brien
Release Date: April 9, 2025

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Introduction

In this emotionally charged episode of The Medical Detectives, Rita courageously shares her decade-long journey through a labyrinthine healthcare system plagued by misdiagnoses and systemic biases. Hosted by orthopedic surgeon Dr. Erin Nance and content creator Anna O’Brien, the episode delves deep into Rita's struggle with mysterious and debilitating medical symptoms, highlighting the profound impact of sexism in healthcare.

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The Onset of Symptoms

Rita’s story begins in 2015 when, at 25 years old, she was living a fulfilling life as a newlywed and mother to an 18-month-old daughter. Her career as a nurse in med-surgical oncology was thriving. However, her life took a dramatic turn one morning:

Rita [02:12]: "The onset of my symptoms were very spontaneous and abrupt. I woke up that morning and felt perfectly fine... And I never came back out of that room the same ever again."

During her workday, Rita experienced a sudden and intense burning sensation in her chest, akin to "fire" beneath her clavicle, leading to an immediate and bewildering health crisis.

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Initial Misdiagnoses and ER Visits

Rita’s first emergency room visit resulted in a dismissive diagnosis:

Rita [22:03]: "I have a couple more things to tell you... they were snapped at in their ear so aggressively and dismissed as having something like a prodded gland."

She was prescribed sour candies to address a supposed blocked parotid gland, a recommendation that not only failed to alleviate her symptoms but also exacerbated her physical discomfort. Frustrated and in pain, Rita made multiple emergency room visits over the years without receiving a clear diagnosis.

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Emotional and Personal Impact

The repeated misdiagnoses took a severe toll on Rita’s personal and professional life. She faced emotional strain, guilt over her inability to fulfill her roles as a mother and wife, and mounting frustration with the healthcare system:

Dr. Erin Nance [16:20]: "Please tell me you went to the ER again."

Rita describes feeling trapped in a system that failed to recognize her suffering, leading to feelings of isolation and hopelessness. Her symptoms, including migraines, photophobia, and trigeminal neuralgia, severely impacted her daily life and family interactions.

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Further Misdiagnoses and Systemic Biases

Rita's battles extended beyond physical pain to confronting deep-seated sexism within the medical community:

Rita [60:32]: "Women's health issues are sometimes reduced to reproduction or weight or their mental health... There is sexism in health care."

She recounts instances where male counterparts received more compassionate care, while her own symptoms were dismissed or attributed to psychological causes. This systemic bias not only delayed her diagnosis but also eroded her trust in medical professionals.

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Final Diagnosis

After nearly a decade of suffering and multiple ER visits, Rita finally received a definitive diagnosis of Idiopathic Intracranial Hypertension (IIH) in 2023:

Rita [86:11]: "I was diagnosed with idiopathic intracranial hypertension, and essentially, it is when your body produces too much cerebral spinal fluid around the brain."

This breakthrough came after a lumbar puncture measured her opening pressure at 35 (normal range: 13-24), confirming the excessive intracranial pressure causing her myriad symptoms. The diagnosis brought both immense relief and lingering anger over the years of neglect and misdiagnosis.

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Reflections on Healthcare Biases

Rita reflects poignantly on the biases that hindered her path to diagnosis:

Rita [62:54]: "There are systemic biases in medicine... racism, sexism, ableism in medicine... they affect a doctor's decision making."

She emphasizes the compounded challenges faced by women in the military healthcare system, where traditional notions of masculinity and resilience often overshadow legitimate health concerns. Her story underscores the urgent need for systemic reforms to ensure equitable and compassionate care for all patients.

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Conclusion

Rita's journey is a stark illustration of the profound flaws within the healthcare system, especially regarding gender biases. Her resilience in the face of prolonged suffering and systemic neglect serves as both a cautionary tale and a call to action for medical professionals and institutions to prioritize patient-centered care devoid of prejudice.

Rita [107:36]: "I think that acknowledging that both can exist at the same time... we can have an exhausted healthcare system, we can have a flawed healthcare system, we can have a caring healthcare system."

With newfound knowledge and advocacy, Rita continues to navigate life post-diagnosis, advocating for others who may be silently battling similar struggles within an imperfect system.

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Notable Quotes

• Rita [00:18]: "I cried like three times in this episode, like full tears."
• Dr. Nance [04:25]: "Wow."
• Erin [29:43]: "How long until your appointment with the neurologist? Like, how long do you have to wait?"
• Rita [46:07]: "She says, you're not my patient."
• Erin [56:54]: "So he's just taking away your future ability to work by damaging your... you are so calm, but I am so mad."
• Dr. Nance [62:32]: "There are systemic biases in medicine. There's racism in medicine, there's sexism in medicine, there's ableism in medicine..."
• Rita [107:36]: "Hope."

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Rita's story is a powerful reminder of the human cost behind medical misdiagnoses and the critical importance of addressing systemic biases in healthcare. Her bravery in sharing her experience aims to inspire change and provide solace to others navigating similar medical mysteries.

Transcript

[Rita]

Wow.

[Erin]

I cried like three times in this episode, like full tears.

[Dr. Nance]

Well, you may not have been able to tell because it took almost four hours filming this episode. And I'm bleary from. I'm exhausted for her listening to her story and I can't wait to share her story with everyone because it is just. I mean, it's heartbreaking. It causes you to be angry. I'm angry for her. I personally went through all of the motions. I saw you go through people who go through the diagno, the misdiagnosis themselves.

[Erin]

I've never seen Aaron get angry, like visibly angry about the situation, except for this episode. Normally, I think she has a moment of logic where she's like, well, this makes sense how this could have happened. And then there were points in this episode where she was like, nope, can't find the logic in this one. And I know it crushed her. But it was also fascinating to see because. Yeah, it is. It's a good one. It involves the military. It also talks a lot about isms in medical care, which I think is probably the boldest we've talked about this. So it's a little bit longer because we get deep in this one.

[Dr. Nance]

Yeah, well, let's get into it.

[Erin]

Let's get into it.

[Rita]

Hi, Rita.

[Dr. Nance]

Welcome to the Medical Detectives. Thank you so much for joining us.

[Rita]

Hi, Dr. Nance. Thanks so much for having me.

[Erin]

I'm excited. This is my favorite part of the week because every time I show up I'm like, is this going to be interesting? Because I'm like, how many stories? Guess what? There's infinite amount of stories. And Rita, I'm very excited today to hear yours.

[Rita]

Yeah, I appreciate you having me on.

[Dr. Nance]

Well, Rita, I want to start a little differently because I feel like for your story, I want to cut straight to the chase and hear what happened on the day that changed your life.

[Rita]

Yeah. So in 2015, I was 25 years old. I was working full time at a local hospital. I had just gotten married. I was three days shy of being married for a month. My daughter was about 18 months old at this time and we had a really active life. And she was the most amazing thing that ever happened to me. Was really in that excited honeymoon phase of life. So getting to the specifics of the day that changed everything for me. The onset of my symptoms were very spontaneous and abrupt. I woke up that morning and I felt perfectly fine. I breastfed my 18 month old daughter as I normally do. I did my normal morning routine and headed to work. I worked in med, surgical Oncology and nursing. And so I was on the floor at 7:30, I did my round of 8 to 10 patients and I headed back to the charting room to do some notes. And I never came back out of that room the same ever again. I simply was sitting there and I put my elbow on the desk. A doctor behind me was talking to me and I slightly turned my neck to look over at him. And I had this intense, excruciating burning sensation come over my chest, more so on the left side. The best way to describe it is it felt like fire, almost as though someone was holding a blowtorch to just under my clavicle. And I sat there in silence thinking, what the hell is that? So as I'm trying to take in what this provider's saying, there's other people in the room that are laughing. You know, we're a full department, hospital patients all around in different rooms. And I am just somebody that doesn't like to make a scene. And I kind of just sat there observing, wondering what was going to happen next.

[Dr. Nance]

Wow.

[Erin]

So you're in all of this pain. It's like a burning sensation. What did you do next?

[Rita]

Well, I just paid attention to my body and I often describe it as this sensation of drinking Boba through a straw. And if you're familiar with that, it's those bigger straws. And as you're sucking, there's that resistance where it's too big to make it up the straw, but you can kind of feel that pull. And I felt a very similar sensation to that. And so after kind of feeling my chest catch on fire where it felt like there was this blowtorch sensation, quite literally as though I had fire being exposed to my chest, I felt this rise of an object start at the left side of my clavicle and move up the left side up my neck. And as it started to approach towards the, the back of my ear, it got much more intense where I started to feel a sensation in my head. And when it got to the backside of my ear, just at the base of my skull, I heard this huge pop go off in my head and it felt like this rumble. The best way to describe it is when you get muscle cramps in your legs and everything at once contracts. And it was just an intense contraction through my whole head. And then my vision and my hearing went out.

[Dr. Nance]

And you're surrounded by doctors and nurses in the hospital and you're literally in the best, the best possible place you could be for something like that. And as this is going on Are people noticing something is going on with you?

[Rita]

Yeah. So when my vision and my hearing went out, it was just for a split second. It was like two to three seconds. The pop was so incredibly loud that I would have thought other people heard it too. I heard it in my head like a. Just like that. And I imagine it was the facial expression that I made that caught the doctor in front of me off guard, where he had said, is something going on? Are you okay? And I said, I know this sounds really weird, but I just had a huge pop sound in my head in my vision, and my hearing went out for a split second. And he said, you look incredibly pale. You look white as a ghost. And the nurses around me then jumped in and started taking my vitals, took my blood sugar, did all the questions of, like, are you pregnant? Have you had anything to eat this morning? And everything checked out fine. All my vitals, everything was normal, except for the fact that I then within a couple minutes, was like, I feel very sick. I feel like I'm gonna vomit, and I don't feel like I can sit up anymore. So they said, we need to get you downstairs to the emergency room. And somebody ran off and grabbed a wheelchair that had a oxygen tank on it. They put me on it. They threw the tubes over my ears, and they rushed me through the back of the hospital, took me down to the ED and started to check me in. And at that point, somebody had already reached out to my husband and made a phone call to him. So it was really quick.

[Dr. Nance]

So you are in the er. These are your colleagues who are working you up. What was it like to be in that situation as a working nurse in the hospital, in the er?

[Rita]

Well, I think it was really confusing at first because I had this, like, maybe I'm perfectly okay. And I didn't hear what I heard because all these numbers seem fine. My vision seems okay, except for the fact that the back of my head feels like somebody took a baseball bat to it. It was at the left back corner of my base of my skull, where it was just incredibly tender, like, you didn't even have to touch it. And I was met with a little bit of doubt and a little bit of, like, oh, pride, you know, I think I'm okay. Maybe I can go back up. And by the time my husband rolled into the emergency room, which he got there really quick, luckily he was in town at the time. He was off of work. My husband's military. So around that time, usually he. He would be gone, but he rolled in and Came into the room, and within a couple minutes they said, are you on any medication? And I said, no, I haven't taken anything. And they said, well, your fingers are turning blue. And I looked down at my fingers and it was probably about to right here that just like the tip of all of my fingers were turning a tinge of a blue color. And they said, we need to get you into a CT scan. We'll be right back. But then a couple minutes later, they come back. They hadn't even gotten me into a room yet. They were just in the triage area. And they said, we have a little bit of bad news. Good news is we think you're stable, you're okay. Bad news is we have a trauma alpha coming in to the hospital. So trauma alpha is usually when a very serious trauma comes in that's going to require all medical providers to be hands on in attending to this individual. And so here that I automatically knew that I wasn't going to be the first individual that they were going to look after. These individuals, rightfully so, would take up the necessary resources that would prevent me from being able to get scanned in a timely manner. So at that point, they willed me out into the waiting room and they said, we're going to put you right in front of the desk. You just hang tight with your husband. They told him, let us know if anything changes, but we'll get back to you guys in just a bit. And so we sat there for about 30 minutes and my husband looked over at me and he said, this is crazy because at this point I was just in tears, My head was in excruciating pain. My left ear felt just. I mean, I couldn't even describe it at that time. It just felt so raw. And he said, we need to get you out of here. Do you trust me to leave with you? And my husband, against medical advice, essentially kidnapped me from the hospital. He ran me out of that hospital quick, and he took us to our home hospital, which is a military facility. And they took me in right away when we got there.

[Erin]

So are you in the military or is your husband in the military?

[Rita]

My husband's in the military, yeah.

[Dr. Nance]

And for people who may not know about this, because most people will have heard of the VA and that is the medical services for if you are a veteran, but if you are active military, you and your family members have a separate hospital system that you get your health care from. And so I'm assuming that's the system that you went to.

[Rita]

Exactly, yeah. So they take me in Right away they put me in a CT machine and bring me back out. And within an hour of observing me, they say, hey, everything checks out really good. There's nothing that we solve, obstruction or dissection, like you are clean bill of health. And they said the body does some really weird things sometimes and you notice anything, come back. But it's A Friday, it's October 16, 2015. You come back and let us know if things change. But take the weekend and relax and we'll put a referral in for a consult to neurology just in case there's a follow up. But you're good to go home.

[Dr. Nance]

And probably at this point, in terms of what is appropriate for emergency room care is that they're probably looking for, and you mentioned it, like a vertebral artery dissection. They're looking. Did you have a massive stroke? And so sounds like they cleared you from those life threatening illnesses, but you weren't given any pathway to figure out what the cause might have actually been.

[Rita]

Yeah.

[Dr. Nance]

All right, so you go home. Were you having residual symptoms from the episode or how did things go from then on?

[Rita]

Yeah, so my symptoms actually progressed within just a few hours. By that evening, I began vomiting. I had a very distinct taste of metallic in my mouth as though I'd been like sucking on a piece of metal.

[Erin]

That's an awful taste.

[Rita]

Yeah, it's such a terrible taste. And I thought, did I just have an abrupt onset of heartburn? I was so confused by the metallic taste. And of course the back of my head was an excruciating pain. I developed photophobia. So light sensitivity. I couldn't be in any lights. I couldn't look at my phone or watch tv. I would see lightning flashes all across the room. Whenever I would blink, it would just be like lightning everywhere. I developed after images within a day or two after being released from the ed.

[Erin]

What are after images?

[Rita]

Yeah, so after images it was actually quite. I had never experienced it before. I didn't even know it was a thing. But it was disturbing in the sense of like you could be watching a show or you could walk in the room. Say if I'm laying in a dark room and you walk in and there's a light in the back of you lighting up your silhouette. Your image would stay within my field of vision as I would look beyond you. So as I turn my head, you would stay in my field of vision. Just an outline of you would stay in my field of vision. It would happen when I would watch tv, when I would look at my phone. I could blink and the after image would stay there. It was pretty distressing.

[Erin]

That's terrifying.

[Rita]

It was a very, very, very odd thing. And it was distressing at first, but I think the most distressing portion of all of the symptoms at this time were probably the onset of the trigeminal neuralgia that had set in. Sometimes it's referred to as the suicide disease because it's incredibly painful and unfortunately has led to many people feeling as though they don't have options because of the limited treatment that is available to support or treat this particular diagnosis. But it is when a nerve, the trigeminal nerve, becomes irritated or there's trauma to it or infected, and it is the most excruciating pain you could ever imagine. It goes slightly up your forehead, into your mandible and your jaw, and it feels like you are being stabbed with an ice pick. It is worse than a toothache. It feels slightly like fire, like electricity. It is horrible. And it started around my ear area and then went into my face and into my jaw. And that was by day two. And it was nonstop. Just this severe pain that would take over the whole left side of my face to where I didn't want to eat, I couldn't sleep, I didn't want to brush my teeth. It was the most excruciating pain I think I've ever experienced.

[Erin]

I'm just sitting here like, please tell me you went to the ER again.

[Rita]

Yeah.

[Erin]

I mean, did you. Did you go somewhere? Please tell me you did.

[Rita]

Well, I have a couple more things to tell you. So I developed, like, muffled hearing. Yeah, I had muffled hearing in my left ear where it felt like I was on an airplane and, like, I couldn't clear my ear. I thought I was losing my hearing because it almost just felt like there was something over it. So I couldn't quite capture everything clearly. It felt like. And immediately it was only on one side. So everything was one side of the body. It was not affecting the right side at all. But the one portion that led me to finally go back to the hospital was I had the pressure developed in my head where it just felt, like, really heavy or like I was drowning or like, trying to gasp for air in my head. It wasn't anything in my lungs, but it was just like, I can't catch my breath in my head. Like, I feel like I'm drowning in my head. And it is so difficult to put words to, but it almost, in a sense, is, like, suffocating where you're taking as many breaths as you possibly can, but that air is not reaching your. Your brain. And you feel the disconnect between your lungs and your head, where it's like, okay, my body is getting enough air, but my head overall is not able to, like, absorb or it's not being transported there. And I just remembered this sensation of fullness, almost like my head was gonna detach and just float off. And this annoying spasming sensation in the roof of my mouth where it felt like my palate was compressing, and it made it feel like my nose was breaking. So I would get the spasm in the triangle area in the middle of my face, and it was excruciating. And then I, on Monday morning, took myself after dropping my daughter off at daycare, and I was supposed to go to work that morning. I was convinced they missed something. And I called into work, and I drove myself back to that emergency room and checked myself in for a second time.

[Erin]

So this is just over the weekend, right?

[Rita]

Correct.

[Erin]

Okay, good.

[Dr. Nance]

So you're having visual issues, hearing issues, sensory pain issues. When you go to the ER the second time and you're telling all these constellation of symptoms, what are they thinking about?

[Rita]

Mm, my instinct is that they think I'm malingering, and I think that's because of how I was initially received. When I checked in at the desk, I was met by this nurse, and I will never forget her name. She was incredibly unkind and disrespectful. When you check back into the system, they can see when you were recently there and what was done. And so she says, why are you back if there was a plan in place for you to go to neurology? And I said, my vision is being impacted. There's something wrong with my hearing. And she said to me, you better watch what you're saying, or I'll make sure that you lose your driver's license. And there's something about military culture, too, when it comes to malingering, right? Like you're trying to get out of work, you're trying to get out of duty. So after having that encounter with her, she came around the counter and had pulled out a wheelchair, told me to sit in it, and she told me to sit there and not move and that they would call me when it was my turn to go back there. And so by this time, when they did take me back, I was there for probably a good one to two hours. So we're going over family history. They're checking my ears, they're checking my vision. They go Back over the CT scan, and I'm there for about three hours. At this point, my husband had made it back to the hospital. They waited an hour and a half. The triage nurse, before she allowed my husband to come back into the emergency room with me. And finally, when they allowed my husband back in, I had a emergency room doctor that I hadn't met, didn't really have, you know, soft skill set in regard to bedside manner. Kind of walked in, said hello to my husband, walks up to me, and with his fingers clasped, he snapped in my ear over and over several times, very, very close to my ear. And he goes, do you hear that? And I was taken by surprise. And he did that to my left ear. And I pulled away, and I said, yes. And he gave a number, a figure of some sort. And he said, you know, the auditory process for hearing is a particular number of decibels. And what you're hearing is this, which lets me know that you're not having any hearing issues. You're not losing your hearing. I know exactly what's happening to you. I see this all the time. He said, you have a block parotid gland. You need to go home and eat as much sour candies, fruit, whatever you can think of as you would like.

[Erin]

I want the candy diagnosis. I want the diagnosis. It's like, go home and eat some candy.

[Rita]

Yeah, yeah. And I mean, at that point, I'm just like, this is crazy. I'm being prescribed lemon heads. Like, this is insane. And so he says, go buy whatever you want and just eat it as much as you can until you can express that gland and it'll go away. And at that point, my jaw was a little bit swollen. You could actually see that it was swelling a little bit. And they discharged me with the orders to go to a local candy store.

[Erin]

Okay, hold on. Erin, is this as common as she says it is? Because I've never heard of this crap. I swear I would know if someone I knew got diagnosed with a candy condition.

[Dr. Nance]

Well, the parotid gland is part of what produces saliva. So I'm assuming the point of eating the candy was to try and unclog some, like, duct that was blocking the saliva, which was backing up and causing this swelling in the back. So I myself have never treated any parotid gland issue, But I can theorize why they would say that. However, it makes no sense. It does not even come close to explaining the majority of the other symptoms that you have. So I can understand that this would be something that perhaps could be affecting that hearing in your ear. But for all the other things that you just described, it wouldn't cover that.

[Rita]

And at this point, when he was talking about naming off all the different candies, I'm drooling of the mouth of, like, are we sure that's what's happening? Because I don't think I'm having any issues with this. So, yeah, we left there and we followed doctor's orders. We went to the most expensive candy store. We bought way too much stuff. I actually remember going to bed that night as we were watching a TV show and I had a migraine. It was really hard for me to focus on the tv, but kind of popping these various different candies into my mouth, and even before I would put them on my tongue, I just would feel this rush of, you know, just salivating. I think when somebody even describes, like, eating hot Cheetos with lime, it's just that natural, normal response where your mouth starts to water. And so I remember thinking, this is probably the dumbest thing that I could take part in. And this is not my actual diagnosis. I cannot believe I'm engaging in this because it's not going to do anything for me. And at that point, I think after about three days of trying different candies, and quite literally to the point in which my tongue was on the verge of bleeding and blistered because of how much sour candy I was sucking on, and it didn't do anything for me. It never had any benefit or effect on my condition. And I think in retrospect, when I reflect on that, it's quite infuriating, to be honest, to think that somebody that would be dealing with something so severe as trigeminal neuralgia would have been snapped at in their ear so aggressively and dismissed as having something like a prodded gland. Not to say that that's not significant. I imagine that is incredibly painful for the people who do experience that. But to just go home with a bag of candy felt humiliating and shaming, in a sense. And then, yeah, I had some more symptoms that developed within the next couple of days. I then develop unequal pupil sizes, and I start having difficulty turning my neck. It feels just incredibly tight, almost as though my neck is going to spasm. I have a hard time raising my arms above the shoulder area, where if I reach above, like, say, to get in a cabinet and get a cup or something like that, it feels like I just did so much weightlifting, my arms just feel fatigued. And it's not that I can't do it, it's just My arms are just exhausted. If I raise them up, I can do anything down here, but above my head they start shaking within just seconds and I can't support my arms up. And I start having these intermittent loss of vision where it seems like my vision's kind of going in and out. And then I have the onset of a migraine, which is for about a week long. And that's what ultimately led to my third emergency room visit within a week. So within like a. Well, like a 10 day period at that point. So the third visit I go in, they give me fluids, they give me medication to take my migraine away, and then they discharge me and send me home.

[Dr. Nance]

Did they know your pupils were different sizes?

[Rita]

Yeah. So what would actually. Cause it was when they would shine a light in my eye. So other than that, they would resume their normal size, but they would respond differently to light. And so then they thought that it wasn't that big of a concern given that I had a CT scan. I have a neurology appointment coming up. I have a block parotid gland. And so it was just kind of like.

[Erin]

But they don't know you have a blocked parotid gland. The only proof is that that guy said you had it, like he didn't like see it.

[Dr. Nance]

You're discharged for the third time with the same instruction, which is follow up with a neurologist.

[Rita]

Yeah. So after that third ER visit, I remember going home that night and I felt quite embarrassed. I remember thinking that my husband didn't sign up for this. He asked a healthy, excited, young, able bodied woman to get married. And so there was a lot of guilt and shame in that and feeling as though I was going to stop his life from being anything meaningful. Especially because I didn't know if there was any sort of neurological disease that was going to be found at this point in what that would look like or what it could potentially progress to. And I also started to consider just how trapped I was in feeling that I was not going to be cared for or taken seriously because I, my insurance was exclusionary that I had to continue going to this facility. I couldn't go to outside care even though There was like 10 other hospitals around me. Right. Like there was one that was like four blocks away from my house and I couldn't go there. And I remember thinking, like, I'm going to commit a financial crime to my family if I even just walk into an emergency room outside of the military installation for care because it's not affordable, it's not obtainable for People to continue living a normal life after you undergo uninsured care. And so I just felt very trapped and as though I had no options available to me to do anything different.

[Erin]

How long until your appointment with the neurologist? Like, how long do you have to wait?

[Rita]

So onset of symptoms were October. My referral was for the first week of December.

[Erin]

Okay, so you. So do you not do anything until you see the neurologist?

[Rita]

Well, no, I actually go back to the emergency room for a fourth time.

[Erin]

Okay.

[Rita]

Yeah. Yeah.

[Dr. Nance]

Okay. So now you've probably officially been unofficially diagnosed as a frequent flyer.

[Rita]

Yes, Everybody knows me by name. They know my car. I get privileges driving on base. So I'm in the emergency room the fourth time because I have chronic vomiting. I have difficulty being upright. So sitting up is really challenging for me. And not because of balance, but because of. It almost felt like vertigo. And also, the pressure in my head was so much more intense when I was upright, whereas I had to constantly be laying in order to be okay. And when I came into the emergency room at that point, the pressure was so incredibly intense. And I had the most severe migraine, and I was just vomiting. And if you've ever vomited with a migraine, that is just like 10 out of 10 awful. That is the most excruciating pain. And this time around was the first time I had a female emergency room doctor at my bedside. And she came up to me and she said, this is crazy, and we are hospitalizing you to do a workup. Finally. So sorry that you've had to go through this, but we're not doing this anymore.

[Erin]

Finally. Finally.

[Rita]

Yeah. So I was admitted for, I think it was two or three days. They did a full brain spinal cord mri. They found that there was a demyelinating process going on in the brain, but it looked like it was a little bit older. Didn't seem like it was anything too spinal cord.

[Erin]

So what is that demyelinating? What is.

[Dr. Nance]

We've had a previous guest where we talked about the myelin is the sheath, and it helps the signal conduct from nerve to nerve to nerve to nerve. And so if that myelin covering is what we call demyelinated, you've lost the myelin cover, the nerve has problems communicating with the other nerves. So it sounds like the mri, they have found some things, but they are not concerned that those are active problems. Is that what you're describing?

[Rita]

Yeah, they don't believe that there's anything progressive going on. They did say, okay, the region of the brain that it was found that alludes to an area that we usually see multiple sclerosis. And so we're going to do a spinal tap. Usually it takes about three to four weeks for us to get back the results for that, because they send it somewhere off out in like the Midwest or East coast for it to get tested. So they did a lumbar puncture on me. So a lumbar puncture is a procedure where they essentially put a needle in between the vertebrae and your spine and puncture the spinal cord so that they can obtain fluid, which is your cerebral spinal fluid, and be able to essentially test it for various different things depending upon what they're looking for. And the hospital that I was at is, like many hospitals, a learning facility. And so I had approximately six individuals standing around my bedside watching this spinal tap or lumbar puncture be done. And it was very unsettling because the individual who's doing it, it was their first time. And I gave consent because I am definitely, you know, I still work in healthcare and it's important to people's development that they get these experiences. And so I was like, yeah, if, if she wants to go for it, sure. And in the middle of it, she said, oops. And the attending doctor had to step in and physically support her and help. And it was incredibly painful. And then afterwards they were like, hey, you know, you're gonna have to lay on your back for a little bit longer than we anticipated. And they took the specimen and they, they got it out to where it needed to go to get tested. And then I was discharged later on that night.

[Erin]

I have a terrible feeling that that oops is going to come back around.

[Rita]

It does, but I think this is where I want to take us back a little bit and give some context as to where I was in life at this point when all this happened. And, you know, describing the onset In October of 2015, I was in my mid-20s, was a mom of an 18 month old little girl, and I was just three days shy of being one whole month newly married to my husband. And we knew we were going to get married, but as a lot of military families do, our wedding was to be put off in the spring, and he unexpectedly got some wild orders out of the country. And with that, we had to adjust so that I would be a dependent and be able to go with him. And we made it official. And prior to getting married, we were incredibly active. I used to run a lot. I worked out multiple times a week. If we weren't at the beach Every evening we were there on the weekend. We were just always on the go, and fitness was never an issue. And at this point, after I had that lumbar puncture, I was set to have an appointment to have my overseas screening done to essentially be approved for my health, to be allowed to move overseas with my husband. And at that point, because of all the emergency room visits and the hospitalization, I had to put off that appointment about three separate times. And so when I was discharged from the hospital within two days of that, I was in the office for my overseas screening to essentially be cleared. And I found myself hunched over the chair of the doctor's console table, vomiting. I had already vomited three times. My dad drove me to that appointment, and I just looked horrible. I felt horrible. I had no idea what was wrong with me, Mind you, I just got discharged from the hospital. I could now, and now I definitely couldn't sit up. Like, I couldn't hold my head up. I had the worst migraine in the world. My vision, you know, lightning strikes were amplified by a thousand. It was horrific. It had gotten so much worse. And in that moment, I thought, this is it. I have multiple sclerosis. I was convinced, like, this is Ms. This is going to ruin my life. And as I'm sitting in that office with her, she said, this is, again, like the previous female provider. This is crazy, because, mind you, the doctor, the neurologist in the hospital who was working me up, he knew that we were set to move overseas, and he had assigned paperwork saying that I was fit to go prior to me going to this appointment. So he signed off on me as a neurologist, saying that I was stable and that I could move overseas. And so in this appointment with her, she said, this is crazy. I'm not signing off on you to go out of the country with some unknown neurological disease that could potentially be taking place. And I started crying, and I was like, this is going to tear my family apart. This is going to separate us. And she said, you're not healthy enough to go. I can't let you go. And so she pulled my papers and said that I was not allowed to travel with my husband.

[Erin]

I get it now. It's a hard place to be, and you don't feel good, but you want to be good enough to be able to be with your family.

[Rita]

Right?

[Dr. Nance]

It's a tough spot for the physician, because in the end, we're not there for what you want. We're there for what you need. And sometimes that is at odds with what you want. So I certainly empathize that. That was just devastating. But in the end, she. She was probably the only person speaking the truth.

[Rita]

Yeah. Yeah, well, and it was really conflicting, too, because, you know, you have various different providers in similar. Ish roles. For the most part, they're colleagues. They work with one another in various different capacities. But to hear someone say, no, this person has a clean bill of health. They can go. And then they. This person's like, you are neurologically not well. It just created so much confusion for me where I was like, I don't know if I'm okay or maybe I am, but I feel like I'm dying today. And I'm convinced I have Ms. And so she gave me a hug, and she said, you're not going overseas. You need to go back to the emergency room right now. And so sent to the ER Again, they say, no, silly girl. This is not multiple sclerosis. This is a spinal fluid leak. So that.

[Dr. Nance]

From the lumbar puncture.

[Rita]

From the lumbar puncture, and.

[Erin]

Oh, God.

[Rita]

The lumbar puncture mistake caused a spinal fluid leak. And so I had no spinal fluid around my brain. And they told me I needed a blood patch, which is a very invasive and painful. Painful procedure to try and fix these kinds of leaks.

[Dr. Nance]

So I myself. Not familiar. I know people who have spinal leaks from lumbar punctures do blood patches, but I myself have never been involved in that treatment. So what Was that like?

[Rita]

Oh, 100 times worse than an actual lumbar puncture. Like, it is, I will say invasive in the sense that what you. You see is graphic and what you feel is even more graphic. Like it. It is. You have to be sitting up. You're hunched over. They're taking fresh blood out of your artery, and they're inserting that into your spinal cord. So there's an anesthesiologist in front of you that's doing this out of your forearm, and then they're handling the tube over to the anesthesiologist, who's behind you, and he's injecting it into your spinal cord. And when you don't have spinal fluid around your brain, that is incredibly excruciating. I mean, it feels like I can only imagine. Like a fish out of water. That's the only way I can describe it. And when you lay down, you're perfectly okay, but the moment you're upright, it is horrific. It is the most terrible thing ever. And so after that's completed, I have no more lightning flashes. Going on in my vision. I still have trigeminal neuralgia. Excruciating pain in my ear. The back of my head. Still really hurts in that one location at the base of my skull. And I have a weird sensation of there's still pressure in my head, but it doesn't feel as intense. But then I developed optic neuritis. And so then it was just, like, my eyes were incredibly painful at that point. And that's whenever I started to get referred out to neuro, ophthalmology, ENT, audiology, cardiology. Dr. Waltour. Yeah. Oh, yeah. I call myself Mr. Worldwide, you know? Yes. I have seen everybody.

[Erin]

Oh, gosh.

[Rita]

Yeah.

[Erin]

I'm just. I'm just. I'd be so annoyed if I went through that process and to get so insignificantly better. I mean, I'm sure it felt good, but, like, what you're telling me is the really painful stuff stuck around.

[Rita]

Yeah. Yeah. And it got more painful because I had to stop working. And in order to take extended leave from work, I had to have extended documentation, supporting evidence that was essentially provided from my provider giving me the time off from work, saying that I was being treated at this point. I'm a huge advocate for mental health. I love therapy. I've been in therapy since the birth of my daughter with postpartum anxiety. And so I was going to my therapist and telling her what was going on, and I think in some way, she was devastated for me of, like, you're a fairly new mom. You're newly married. You're supposed to be moving out of the country. Like, wtf, Rita? What is happening? And I shared my concerns of, like, I'm gonna lose my job. This is gonna end everything for me. And I haven't been able to get a doctor to sign off on me being on an extended leave from work. And she's like, hello, doctor Here. I will sign off on your paperwork. And I never thought of that. And so she signed my paperwork. I submitted it to my job with a little bit of apprehension of, like, okay, I leave work because I have a pop in my head. I'm gone for two weeks. They're hounding me like, hello, you have work? And then they get paperwork from a psychologist. Like, that's pretty weird. And so the story that I was creating, the picture that was coming up, made me feel, I think, a little self conscious. And I already started to develop a little bit of shame for what was taking place for me. So it was by Halloween, at this point, I had already had my workup done. I Was out of the hospital. I had within a 15 day period, five ER visits, hospitalization, my workup done, and my blood patch. And then I was discharged in Halloween. Took my daughter to two houses to trick or treat. Submitted my paperwork to my job, and the extension was from beginning of November until February. I think it was like first at that point to kind of get me over the hump, and then we were going to see where we were going to go from there. So at that point, make it a whole month through November, weird symptoms kind of subsided, but then some others came up and then others exacerbated, like the trigeminal neuralgia was the most pronounced thing that I was experiencing, and the stiff neck. I then ended up finally attending my first neurology appointment. And I go into that neurology appointment and this female provider's there, and she opens up my chart and she starts reading it. And I'm just, just, you know, I'm ready. My husband couldn't get off work, but my mom is there with me and we're going to get these results and we're going to find out if I have multiple sclerosis that day. And she says, I need you to give me a couple minutes. I'll be right back. And I. That's not good, right? Yeah, I was just like, crap. Like, this is definitely what I have. And so she walks out of the room and she comes back and she says, you're gonna have to reschedule. You're actually not my patient.

[Erin]

What?

[Rita]

Yeah, she says, you're not my patient. The neurologist that worked you up needs to be the neurologist that gives you the results. And I don't know why you were put on me. You are with Dr. So and so, and he needs to see you for these results. I am not the person to pick up his patient. I'm sorry that this creates confusion for you and I'm sorry if this angers you, but you will not be getting any results today. So I left that appointment.

[Erin]

Did they tell you when you'd be able to get in and see the doctor that was supposed to see you?

[Rita]

It would be another two weeks. And so I left. I waited another very long two weeks at this point. And the day that I had my follow up with that provider, I went in and my husband showed up with me that day. And the doctor says, oh, I remember you. Weren't you the patient that had meningitis? And I said, no, no, I've. I've never had meningitis, like, ever. Like Never in my life. And he said, oh, okay, well, let's look at your results. And so he opens my chart, he gets very quiet, and then he says, so I have some bad news, and not bad news that you have Ms. But when we sent out your specimen, there was no signature that was put on it. And so your CSF wasn't actually tested when it got to the site, and they disposed of it. So we don't know what the actual results are because they never tested it.

[Erin]

I 100% know why that lady did not want to see you, because she did not want to deliver that news.

[Rita]

And that was my suspicion as well. And, you know, I now, at this point, like, I look at it with various different perspectives, right? Like, yeah, shit happens. Things happen. Providers have huge caseloads these days, and there's so many places in which errors can be made. But that, at the. At that point, just felt so incredibly egregious. And also at that point, I just found out a couple days before that that I was pregnant with my second child. And so the neurologist told me, the good news is, is that you're pregnant. And so if this is multiple sclerosis, you'll most likely go into remission.

[Erin]

Yep, we've. I've heard about that before. I'm just. In my mind, I'm so mad, because it's not one mistake. It's now two mistakes. Somebody's now screwed up the. It was the initial spinal tap. They screwed up. Correct. And I'm sure you're not eager to do another one based on previous experience.

[Rita]

And I couldn't, because I was pregnant. And so the thought was, you will potentially go into remission. Like, if this is ms, this is great news. This is hopeful. And what we can do is when you give birth, we'll do another round of MRIs on your spinal cord and brain and see if there's any progression or changes, and then we'll handle it there. But go home and enjoy your pregnancy. And I was just like, this is. This is gonna change my life. And so we hadn't even gotten out of the parking garage from the hospital. Will be walked out of there with that information. And my husband's calling the detailer and was just like, you need to do something. You have to help me out. My wife, I can't leave without her. She's pregnant. There's potential that she has a neurological disease. I will literally do anything. Like, do I need to get out of the military? Like, what is it that I can do? And we Kind of sat there with that uncertainty of like, this is the closing of the window. We don't know what's gonna happen. Worst case scenario, you're gonna move away for about four to five years by yourself. Four to five years.

[Erin]

This is a really long assignment.

[Rita]

That was not a. Yeah. And then three days later, yeah, we got the news that they were gonna let him just stay where he was. And I entered my pregnancy incredibly anxious, thinking, what could potentially happen to me with this? This is more progressive and it doesn't stop. And I grow increasingly more sick. It was a really, really scary time.

[Dr. Nance]

Who's helping to take care of your daughter?

[Rita]

Luckily, my mom lived within the vicinity. And so for the most part, as I transitioned into my second pregnancy, it kind of became as though I enrolled in daycare. It felt like, like my husband began dropping me off at my parents every morning when he would go to work and I would.

[Erin]

Daycare for you.

[Rita]

Daycare for me, yeah. Because it was just like there was so much uncertainty with how sick I felt. And then the pressure in my head increased over time, whereas, like, you know, it came back and it got worse and it got worse and worse. And then it was both of my ears, and then I had optic neuritis in my right eye, and both of my eyes were being aff. And then the lightning flashes came back and the trigeminal neuralgia got worse and everything just, I mean, times two just got incredibly worse. And then I started to gain weight incredibly fast with that pregnancy. And mind you, at the onset of my actual symptoms, I'm 5 foot 10 and my weight was 165, 170 pounds max. And for someone like myself, that's 5 foot 10, like, like that's not someone who would be deemed overweight at that point. But as I moved through my pregnancy, I gained weight so incredibly fast. And then it turned into, you need to stop eating as much, you need to have portion control. And it was just so finger blaming, as if there was no self control. I just started to be treated a lot differently. I noticed from that point on, as I progress through my pregnancy and we.

[Dr. Nance]

We talked about this last week also, how sudden increases or decreases in weight should be considered a warning sign. Right. And even in someone who is pregnant, it is not normal to have massive shifts in weight. You know, it's not just accumulation of fat, it can be fluid signs of preeclampsia. These are really dangerous conditions.

[Rita]

Yeah, absolutely. I was somebody who looked like they had preeclampsia. My feet were massive My hands were massive. Like, I couldn't get enough water. And I ate incredibly healthy. And I was being ridiculed for, like, you know, you need to make smaller portion choices. You need to eat less sugar, you need to reduce your carbs. You need to move more. And I'm about three months in, so three months into my pregnancy, which is five months into onset of my symptoms, I go to neurology, follow up, and I'm there because I need A, to be checked up on B, I need an extension for this letter for my employment. And I go to the appointment, and he says, I want to try this exercise with you, and let's just see what happens. So he hands me a plastic bag, and it's one of those drawstring plastic bags that you get when you go to the hospital, and they tell you to put, like, all your garments in and things like that. And so he hands it to me and he says, I want you to roll it down and make it into almost like a paper bag size. Put it to your mouth. And I want you to breathe in and out at the rate of what you would sing Happy Birthday. So I want you to sing Happy Birthday in your head and then like that, in and out through the bag. So I. Sitting on the edge of the bed, my husband's in the room with me. I put the bag to my mouth and I start doing it. And in the middle of doing this exercise, he says, do you feel anything? And I'm looking at him and I'm like. Because I'm starting to see stars. My hearing feels weird. I feel like I'm about to pass out. And he goes, I know exactly what is happening. And immediately I was just like, holy crap. Like, I. I have a diagnosis. He's gonna tell me what has been going on for me all these months. And he says, you're hyperventilating.

[Erin]

Oh, come on.

[Rita]

He says, you are hyperventilating and you are holding your breath. I think it's time that you go see someone for your mental health, because it could be psychogenic, this could be anxiety, and I think you probably need to talk to somebody. So the appointment starts to come to an end, and I said, because we don't know what this is, and say for some crazy reason, it's psychogenic. Can you at least extend the leave for me to be off from work so I don't lose my job? And he said, I'm not doing that. I think that you need to be home with your children and prioritize your husband's Career. And I'm not comfortable signing those papers.

[Erin]

So it had nothing to do with your health. This man wants you to just stay home and be a baby mama. Sorry I'm so incredibly limited for you. You are so calm, but I am so mad. Not that there's anything wrong with being a mother and staying home. That is a totally viable option. But you should not have to completely abandon everything if you don't want to. Nor should it be a doctor that has any effing say in what you choose to invest your time in.

[Dr. Nance]

And you're not even asking to not work, to stop work. You're asking to not work so you can continue to work.

[Erin]

Yes. So he's just taking away your future ability to work by damaging your. Oh, that is so shady. I am so sorry. I am so incredibly sorry to have to be dealing with what you're dealing and then to deal with that.

[Rita]

Oh, it was devastating. And the next day, I had to go to work and I had to resign on the spot. I had to turn in my badge. I couldn't produce any sort of documentation to say, this is what's been going on for me for the last four or five months. And it was humiliating. I felt crazy, even though I knew I wasn't crazy, but crazy in the sense of, like, people think I'm crazy. Like, I brought in a psychology note to excuse me from this. My doctor just dropped the P word on me last night. Right. Like psychogenic, meaning. This could be somatic. I was then told to prioritize my husband's career, and my mother had actually driven me to my job that day. And I was so devastated walking out of that hospital. And I just thought this was supposed to be the best year of my life. I just got married. This was our happy ending. We got orders out of the country. I have a job that I love. This is everything that I've worked so incredibly hard for. And in an instant, it was completely taken away. And I was so confused. I just didn't understand why I couldn't rely on all the adults around me. Like, it felt like it was a me thing.

[Erin]

I started crying there for a little bit because I just. We always hear these stories, and they're always so unfair. And what sucks is I know you're gonna get to a better place. Or at least I hope you do. We're not through the episode yet, but so many times the. The suffering that people face is unnecessary. Right? But in this. This situation, somebody took something from you because of nothing related to your medical and I think that in a lot of ways is worse because you can't chalk that up to lack of experience or not knowing about the condition. I mean, that was someone who literally had no right to control your life, stepping in and trying to control your life. And that is just so incredibly screwed up. And I am so sorry that you experienced that. And I hope, I hope by the end of this episode that you still get your fairy tale, because I think you deserve it.

[Rita]

Thanks. Yeah. And, you know, what you're describing is the biases that exist in healthcare. And that is a really difficult conversation to have. Like, it evokes so many different conflicting feelings for individuals because it is very political. And when you bring up that particular ism, which is sexism.

[Erin]

Yeah.

[Rita]

Women's health issues are sometimes reduced to reproduction or weight or their mental health health. And this is why you've started this platform and this podcast, because the women that you've brought on here are sharing a common theme without calling it for what it is, which is that there is sexism in health care. And it involves really complex issues, whether it's gender biases and. And it's a sensitive subject and it's emotionally charged. It's challenged in very deep seated beliefs and norms around gender roles. And that in itself of, like, Rita, you need to prioritize your husband's career. Like you, you need to be at home with your children. That was very much the beliefs of somebody else's values. That wasn't mine. You know, I have values of being a mother, which is why I'm a mother. I chose to be a mother. But you don't get to define that for me and tell me that I don't get to work or that whenever I actually experience health issues, that it's because of my mental health. Because if my husband went to that hospital, I'm pretty sure he would be given, you know, pain medication. I was never offered pain medication, not once. I was given migraine medication one time. And I'll tell you this, I wouldn't even accept pain medication because I wanted to prove that that was why I wasn't there. I wasn't drug seeking. I was trying to figure out what was going on for me, because it doesn't make sense that you live a normal life. And then one day like that, it's all over and then you all of a sudden can't sit up and then everything's just going completely wrong.

[Dr. Nance]

Rita's absolutely right in that there are systemic biases in medicine. There's racism in medicine, there's sexism in medicine, there's ableism in medicine, and all of those affect a doctor's decision making, whether or not it's conscious or unconscious.

[Rita]

Right? Sure. Well, and I think if we take it even like another step further, you know, that sort of biases that even plays into military culture. And I'll be one that says military is not my identity. Like I never served, but I am someone who has lived most of their life within that healthcare setting. That is primarily what I know and what I've received for a majority of my life. And what's deeply ingrained in that culture is masculinity, strength and resilience. And so when sexism in the military is discussed, it can be perceived as an attack on that culture. And many people might even feel very defensive because they see it as a very highly respected institution that represents discipline, sacrifice, and even national pride. And so acknowledging sexism within the healthcare system, but even within that institution may feel like you're undermining the values and even the image of the military itself. But this is my story, and I'm someone of privilege. I have a bigger stick to swing. And if that's my experience where I can essentially lose my job because I don't have the support of a provider, how is that that going to affect other people who don't have the same privileges I do within that same health care system? But at that point, I was left with no other options and I really just had to come to terms with my reality. So I, you know, I adjust, I stay home, I adjust my life to finding ways to feel more comfortable. I teach my 2 year old daughter how to call 91 1. Fun. And every day we had our routine where we knew where the phone was and if something happened, this is grandma's phone number and this is the button you push and this is how you unlock mom's phone. And so we just developed this routine of like, okay, I could depend on my kid if something happened to me and she needed to get a hold of anyone. That was just the trust that I had to develop and kind of like lean into the possibility of potentially dying in the presence of my daughter. Because I was so sick of living in fear or being babysat by my parents or being bound by this uncertainty. And then when I was hit with the, you know, this is potentially linked to psychogenic, it might be somatic, then it was just like, well, I'm gonna go live on the rest of my life because you sure as hell can't figure out what it is And I often reflect on that with how terrible it would be, you know, of the inability to get it right or to be an expert in a particular field, and how threatening it must be to have your credibility questioned when you can't figure out what's going on with somebody. And I imagine at some point it was like a, you know, a pressure point on the ego. It's. I can't nail down a diagnosis. This isn't working out. So what else can I blame it on? It's your mental health. And so I just. Just moved forward with my life. I gave birth to my son. I followed through with my MRIs, and they were stable. And they essentially said, you do not have multiple sclerosis. The lesions didn't grow. They don't make sense with the symptoms that you continuously had, which never went away during my pregnancy. They just got worse. And they said, here's a referral to go to physical therapy. You have straight cervical whole spine. Maybe get that fixed and good luck with the rest of your life. And that was it. And that took us to year two, and so, you know, year three, I continued living with those same symptoms, no resolve, continuously explored. I went to one doctor, and I was like, look, I had this happen before I got sick. I went horseback riding. Could this be Lyme disease? Did I get bit by a tick? And at one point, I was like, this might sound crazy. Do you think I'm allergic to my husband? Like, is there a possibility? Well, and I mean, I was just finding the wackiest things online of, like, there's actually people who have immune responses to their partners, and that is insane. And they are just like, you're crazy.

[Erin]

You're not helping.

[Rita]

Like, this is.

[Dr. Nance]

Yeah, go eat some more candy.

[Rita]

Yeah, go have some more candy. Breathe in a bag. And so I just was like, all right, well, what can I do? And I overhauled everything down to, like, detergent in my house, hand soap, like, any endocrine disruptor. I mean, I was so close to sleeping with crystals under my pillow at this point, because I was just like, something has to give, right? This is insanity. None of this makes sense. Went to so many different specialty doctors. They're all perplexed by this. And one day I go to get on the freeway, and I have my. At this point, my son's 2, and he's in the backseat. He's having a little bit of a tantrum. And I go to get on the freeway, and it's tons of cars. I live in a really big city. And so as I go to Merge, I get a little anxious and I feel my blood pressure rise. And immediately the pressure in my head increases. And then I feel my arms kind of go numb and it freaks me out. And I. As soon as I get on the freeway, I get off the next exit and I called my husband and I told him what happened. And he was like, maybe it's just anxiety. And I thought, fuck, at this point, maybe I just have anxiety. And I took all the back roads home and I felt really pissed off at myself. I felt like a complete failure, like, God, now every part of my life is closing in on me. I go to my therapist, you know, and love her. I've had such a long relationship with her. She's seen me through so many different elements of my life from birth to marriage. And I go to a therapy session with her and I told her what happened. And she looks at me and she goes, rita, do you know what that's called? As I'm describing the sensation, like, my arms went numb and I just had so much pressure in my head and my whole body. And I was like, no. And she goes, you don't know what that's referred to as? And I was like, no. And she said, that's hysteria. What you just described to me is hysteria.

[Dr. Nance]

Wait, a modern day therapist said that?

[Rita]

She did, yeah. So what is hysteria? Yeah, so hysteria is a concept within psychoanalytic therapy. It's tied to Sigmund Freud, actually. But essentially hysteria is the proposition of, like, how your mental conflicts and trauma experiences come out in the physiological response. And so there's a connection between the two.

[Erin]

But isn't that like old timey?

[Rita]

It is, it's more so now described as psychogenic or somatic or things like that sort.

[Dr. Nance]

And just so you know, the root word of hysteria in Greek is uterus.

[Rita]

Wandering uterus, yes. So the moment I heard that this was 2019, I'd been in care with my therapist for four or five years at this point. And I remember that was the day that my trust in her was severed. Where I loved her dearly, respected her, learned so much. I mean, she was with me through so much. And. And when she dropped the wandering womb on me, I was like, I don't think I'm ever going to discuss a health ailment with you ever again. And that was really, really challenging for me. Like, I was incredibly. Even to this day when I reflect on that, it's so hurtful to have been told that. So we're 2019, right? We're four years into symptoms, never going away, they all stayed the same except trigeminal neuralgia has slowly started to dissipate. Like that has started to kind of take a backseat. Now my vision is being even more impacted where I'm kind of losing the peripheral at this point. I start to have pulsatile tinnitus and also vision where it's just like whoosh, whoosh. And it's like my eyes, eyes do that. So my vision does that in sync with my pulse as well as my hearing.

[Dr. Nance]

And so some people may experience that. If you've ever like lie down and go to sleep and you can hear your heartbeat like on your pillow, that's pulsatile tinnitus.

[Rita]

Yeah. Which I mean it's fairly normal. Like most people will experience it at some point within their lifespan, but when it's day in and day out and it's chronic and it's non stop and, and it's within changing positions, it is so infuriating. It creates so much impairment in your life cause that's all you can hear. And so I'm still going on with life, going to school, being a parent, trying to reduce my weight back to what I used to originally weigh prior to the onset of my symptoms. Things are not helping at this point. I'm like 50 pounds heavier than what I was at the onset of my symptoms. I then move into year 2020, Valentine's Day. I wake up of 2020 and just before COVID hit, I promised my daughter. She's like 4 or 5 at the time. I was like, we're going to go have a mom and daughter Valentine's Day. And we get up, we get dressed, I have that pain in the back of my head for some reason is a lot worse that day. And I then start leaking fluid from my left ear. And it's clear. But when it started the onset, I had a huge pop in my head that I heard and fluid came running out of my ear. And for about two weeks it felt incredibly raw. Where like when wind would kind of pass my head, it felt like you got out of a pool where your ear was wet. I was just continuously wet inside of my ear for about two weeks.

[Dr. Nance]

And you didn't see someone when that happened?

[Rita]

No, I at that point didn't trust going back to the emergency room at this point. I've already had five ED visits, prescribed candy, prescribed plastic bags to breathe in. At that point it was just like I didn't know what to make of it. And I called my ENT at The hospital and said, I'm leaking fluid from my ear. They brought me in within a week and they said, oh, we know what this is. You have Eustachian tube dysfunction and we think you have allergies. They prescribed me allergy medication and they said, maybe you need tubes put in your, your ears. Because, because for some reason, for five years you've had all these issues with like pressure in your ears and all this. So we'll talk about it. We'll schedule you a follow up. I go home, another week passes, and my ears, still wet inside. It's very raw. It hurts. And I call them like, hey, are we going to schedule a follow up? And they said, you know what, there's nothing more we can do for you. We think it's a risk to, to place tubes in your ears, in your Eustachian tubes at this age. And so just get comfortable and take the medicine that was prescribed to you. And they refused to schedule me a follow up at the ent.

[Erin]

You know what's happening. And this has never happened on the podcast before, but I can visibly see Erin getting a little angry. And I don't think I've ever seen her. She's just like. And it's so subtle. Right. But I've been on enough podcasts with her that I could just see in her face. Yeah, she's not pleased with that treatment choice.

[Dr. Nance]

Well, you know, I know very little about ent, but I do know that there is a test that you use to test the fluid to see what.

[Rita]

Type of fluid, if it has glucose and it.

[Dr. Nance]

Correct, Correct. You know where I'm going.

[Rita]

Yeah, yeah.

[Dr. Nance]

Okay. But I'm going to assume that they did not.

[Rita]

They did not do that test. No. So that's 2020. Move into 2021. Same 2022. Pressure's still there. It's getting worse. 2023, the pressure is so intense and painful. And this is the year where I kind of have come to terms with the fact that I'm going to die young, that nobody's going to figure out what is wrong with me, and that my kids will not grow up to have me around Living with these chronic symptoms and not knowing what the reason is for it was incredibly isolating and, and I think more so mentally challenging than actually physically challenging, although it did create a lot of physical impairment for me. And I think overall there was oddly some weird sort of like self induced acceptance for how impermanent life is that I just kind of wrapped my mind around where I essentially just thought every day could be the day that I would die. And not having any sort of clear answer or direction where to go, I think I just eventually stopped really talking about what I was experiencing, although it was every day, all day. And I think for the sake of not wanting to overwhelm my family, I. I stopped talking to them about what was happening. And I just had to keep living my life. I raised my children, I went back to school, I got a completely new career and profession, but the whole time, every day, I was living with this. And it was isolating in the sense that none of my friends even knew. I had never shared a single symptom with any of my friends. They never knew anything was going on with me. And I remember the day that I finally told my friends, two of them in particular, about my diagnosis. They were really shocked and expressed a lot of concern to me because they were just like, aren't you scared? This is terrifying. This is huge. And I remember saying, I've been dealing with this for close to a decade now. And there was, I think, even within them a little bit of disbelief because how could somebody lead such a, you know, quote, unquote, normal life when having lived with such debilitating symptoms? And I think that in part, it's one of those things of you're not really wanting to make a big deal or be seen in a negative way what you're experiencing. And I think in a sense, I started to even just minimize my own pain and suffering for the sake of other people's discomfort. And I didn't want to die. And I didn't have a plan to end my life. I just knew that my condition was going to take my life. I felt it in my head. I told my husband, I am going to die of a stroke someday. There is something vascularly wrong with me. And nobody has listened to me. And he begged me, like, go to the doctor. We will go to a different hospital. We will try something different. And I didn't trust anybody. I did not want to go through the ass pain of, you know, being given a fucking plastic bag to breathe into. I didn't want to be told to go. Go buy lemon heads to suck on. So when my husband actually exited the military and we had a change in insurance and I could start going out into the civilian world, I had already just created this belief that if this many specialty providers, who spent most of their life studying and gaining expertise, whether it was cardiology, audiology, neurology, neuro, ophthalmology, that nobody else was going to be able to Figure out what was going on for me. And there was just a lot of shame that I had developed. And I think at that point, being a young mom to young children and having a partner who's transitioning out of the military and just going through the degree process with my own education and so many moving parts that I didn't necessarily have the emotional energy to reinvest. I wasn't at a place where I felt like I could even start talking about it again. And that year I started to develop what is referred to as visual snow. So when you look at a TV screen when you're a little kid, it's almost like poltergeist, right? Like all staticky and things like that. I started to develop visual snow within the peripheral of my vision. So just a lot of static around the side of my eyes. And at first when it happened, I thought it was a one off. And then it got worse and worse and worse. And that was around August of 2023. And the pressure was getting so bad that I couldn't turn my neck when I was at work. I could barely get off of my chair and go get a patient from the waiting room. Like it was so intense. And it wasn't because I couldn't physically walk. It was just like the pain was just so excruciating. And here I am, you know, sitting with people in the worst times of their, their lives and they're helping them move through the emotions. And yet I'm ignoring and pushing away my own experience because these people trust me. But I don't trust the other people that are supposed to help me. I can't even trust to go to a neurologist or a doctor and tell them what's happening. And finally around November, start to come to terms with like, okay, I'm going to go to my primary care doctor. I'm out in the civilian world now. I can probably convince him to give me a neurology referral. Then he doesn't think I'm crazy because now we're like year eight or nine and nobody's figured it out. And so I was like, okay, I'll start small and I'll ask for an endocrinology referral, because I needed one of those anyways. And I go in with two requests for referrals. And he said, what makes you think that you need a neurology referral? And I said, well, we could take care of that next time because I got really scared. Like, I was just like, I don't even know how to have this conversation with him. So he's like, yeah, I'll give you an endocrinology referral for this complaint.

[Erin]

And.

[Rita]

And so he gives that to me a few weeks later, unrelated, I go to my eye doctor with my kids just for a routine eye appointment. And it's December 22, 2023. And I almost canceled that appointment that day because I had to drive on the freeway to get to this location. And I just didn't feel well. And I ended up making it to the appointment, and as I'm sitting in the chair and he already checked my children's eye, and he's looking at my eyes, he pulls away and he sits back and he looks at me and he goes, how are you feeling right now? And I said, why do you ask? And he says, I need you to tell me the truth. How do you feel? And I said, I feel like I'm dying. And he said, you're on the verge of losing your vision right now, and I think you have a condition that we need to get you to the emergency room to be treated for. But this was the first time that a doctor ever looked at me and said, I see that something's wrong with you. There's something there. And mind you, I had been to neuro, ophthalmologists, I'd been to anti automation audiology, like neurologists, I've had everything. And I've listened to this podcast where women say, like, I had to fight to get that referral. I had to fight to get that mri. I didn't have to do any of that. I, if anything had excess, sort of like, rule out. And so going back to, if you're questioning somebody and their level of expertise, right, not just one doctor, but like 10 specialists, the common denominator is me. And so.

[Erin]

Well, also the common denominator is those were all military doctors, right? And this was one of your first civilian experiences, is that correct?

[Rita]

This was the first civilian doctor that I had. And by the time I made it to this provider and he said, there's something wrong with you. You need to go to the emergency room. By the time I walked out of that office and I got in my car, my doctor's office was calling me and said, we need to do an emergency telehealth appointment with you right now. I stayed in my car. They met with me within five minutes, and they said, we're going to hospitalize you. We're going to do a workup, and there's going to be MRIs, and there's going to be Another spinal tap done.

[Erin]

And so the same hospital system?

[Rita]

No, completely different hospital system. Okay. So I go home, I pack up all my stuff, and I'm ready to be at this hospital for, you know, two days. And once I go to check in, they say, oh, we're not checking you in. And I was like, here we go again. Like, what is going on? And they said, let's just. Just process you through the emergency room. No one's here. We'll get it done fast. Then you can go home. So they do the spinal tap first, and whenever they do that, they measure the opening pressure when they do it. And so for me, my opening pressure for that, for the lumbar puncture was 35. And correct me if I'm wrong, Erin, but for, like, a normal human, it's supposed to be between 13 and 24, I believe.

[Dr. Nance]

Yeah, you're way over the normal limit.

[Erin]

So it's super, like, almost double.

[Rita]

Yeah. And so once I feel that needle go in my back, I immediately feel the pressure come down. And when he puts it in to the emergency room doctor, puts it in my spinal cord, he says, yep, you have intracranial hypertension, and this is going to save your vision. So I was diagnosed with idiopathic intracranial hypertension, and essentially, it is when your body produces too much cerebral spinal fluid in around the brain. Essentially, the amount of pressure that was being put on my brain was causing me to lose my vision, and it was impairing my hearing. When I would get anxious or bear down or change positions, the increase in blood pressure would increase the pressure in my head, which would make sense why sometimes I felt like my arm would go numb. And everything that I had experienced completely aligns and makes sense with that diagnosis. The moment that I had the spinal tap, I immediately just felt this relief take place within my head, where it kind of just felt light and almost like clear, in a sense. And I wasn't quite sure what was happening until the doctor had said, yep, you have inner cranial hypertension. This is what's going on for you. And I remember just sobbing so incredibly hard. I think I was just in such disbelief that something so simple as that could pinpoint what was going on for me, but also that I had had one previously done and it was missed. And in that process of having sat up after that, in having the ability to turn my neck with ease. And I think that's what's so interesting about this, is that, you know, over those years, I would get so much chronic neck spasms, I would have such a difficult time, you know, turning my neck. My husband. I would often joke about me being Batman, where I'd have to turn my whole body to talk to somebody because I had no range of motion in my neck. It was just incredibly tight. And it was like I could finally turn my neck. I could just feel light. I stood up. I didn't have the whooshing in my ears and my vision didn't pulsate to the rhythm of my heartbeat. And it was so fascinating where I just thought, like, it was that simple, like it was that simple. That is the thing that changed my life. And I remember walking out of the hospital that night and going into the parking garage and I felt this tremendous amount of just weight lifted off of me. And when my husband and I got in the car, I just cried the whole way home. I could not, I think, contain just the grief or disbelief, but I just think more so the emotional sadness that I had to essentially ignore for years and put on a face that everything was okay with me so that I wouldn't play into the narrative that was presented so early on that it was in my head that there's something going on with her from a psychological standpoint. It was very short lived though, because then that's what kind of made me fall into a state of tremendous anger and also a state of extreme bitterness where I was very mad.

[Dr. Nance]

And I'd like Molly, our producer, to tally up the number of times you said you had pressure in your head during this interview because you basically were complaining about this diagnosis the entire time for 10 years.

[Erin]

Shouldn't have they been able to figure this out the time they did the first spinal test tab?

[Rita]

So when we went back in the records, there's no opening pressure that was ever recorded for that lumbar puncture.

[Dr. Nance]

And I have to say, because I have done lumbar punctures myself, and depending on what you are doing the lumbar puncture for, you may not measure an opening pressure. So for example, if you are doing a lumbar puncture because you're concerned about infection, you're doing a lumbar puncture just to get a sample. So you do the puncture, you collect the fluid, you send the fluid off to be cultured. Now, in this case, they were looking for this diagnosis, so that's why they did that as part of the lumbar puncture. But for a lot of people who think, why didn't they just do this? Or how come they didn't just order this test? A lot of Times you have to know what the diagnosis is to order the correct test. So in this case they, yeah, you know, obviously this, this is what it at least confirmed that you had too much pressure inside your brain and spinal cord system.

[Rita]

So once I have this lumbar puncture, they confirm that this is what it is. I just have, have so much relief come over me where I'm just like, oh my God, we finally have a diagnosis. It's freaking csf. The elated feeling of relief and excitement and hope of having finally figured out what is going on was so short lived because I had spent so many years emotionally and and quite literally physically trying to survive. And I myself was completely shocked with the immense amount of anger and sadness I was met with. And also just this level of, I think there's no other way to describe it, which is depression, which for me is incredibly foreign. But I felt incredibly paralyzed, like I didn't know how to move forward. I was convinced that I was going to die from this and now I had to figure out a way to live and heal and essentially, as ridiculous as it sounds, almost forgive these people for what they didn't know. How could something like this go so unmissed for so long? And I think what is led into this next portion of it was like, okay, where does it originate from? So I had an mri. You're good. Angiogram, you're good. That's nothing in regard to that. I go to my first follow up appointment with a new neuro ophthalmologist. Never met him. It's like one to two weeks out from beginning, being finally diagnosed. I'm optimistic, I'm like awesome. I'm going to go into this appointment, we're going to figure out where the hell this is coming from or at least just this fixed it. And I go into the appointment, he walks in and within two minutes he tells me that my condition is because I'm of obesity, that I am overweight and this is what has caused my condition and the onset of my symptoms. I was in pretty good shape. I didn't have a high bmi and that's one thing that I pointed out. But because of how I physically looked in front of him, I couldn't convince him otherwise. And I told him I'm not willing to accept that reason or rationale for it. And he said, well this happens to women your age, women who are overweight, it's primarily in women that's, you know, the cause of it. And I said, did you even look at my record? Can we take a trip down, like nine year. Nine years of memory lane. I got diagnosed nine years in three months after the onset of my first symptoms.

[Erin]

And your first symptoms happened when you weren't overweight again and a side effect of what you were facing?

[Rita]

Sure.

[Erin]

Not the cause of it.

[Rita]

And there's literature that supports that. And I actually chose not to go back to that doctor ever again. I never returned to his office. I waited six months to get into a new neurologist out in the civilian community world. First time he saw me, he was going over my history, and he pulled up one of the tests from the initial lumbar puncture that I had in 2015, that first one that I ever had. So it didn't get sent out to be tested for the Ms. Portion, but it did get tested for lymphocytes and glucose levels and all those other things. And the interesting thing that they missed was that I had a hundred percent like, I. And correct me if I'm wrong, Aaron, but it was like 100% higher rate of limited lymphocytes in my CSF fluid. And so he said, were you sick at the time that you had this lumbar puncture? And I said, no, but four or five weeks prior to that, I was the sickest I had ever been. I had a respiratory infection. I thought I could somehow get through it on my own, but eventually I came out with bacterial pneumonia secondary to the respiratory infection. And he's like, what other symptoms did you have? And I told him, and he said, I wonder if you had meningitis. Yeah. Yeah. So there's the question of, like, you could have had meningitis.

[Dr. Nance]

And to go back to what you need to test for. So when we do just like a blood draw, right, Part of the blood draw, you analyze the cbc, the components of the blood. And so you may see that your white count, which is normally between, say, like 7 and 12, you may see a white count of 20. So I'm pretty positive you have an infection, but if I did not send that fluid for culture and sensitivity, then I'm never going to know what the infection was. So it sounds like they probably had the percentage of cells, but they, I'm guessing, did not send for a culture and sensitivity.

[Erin]

Did that doctor walk into you and be like, aren't you the girl who had meningitis?

[Rita]

Meningitis, yeah.

[Erin]

So he.

[Rita]

And so there's just all these little things that were dropped. And so nine years down the road, right. Like, we're close to a decade, decade later where we Start to kind of put the whole picture together, and it's like, wow, people were dropping some information, but never really following through on it. Doesn't make sense as to why I would feel a boba, like, object move up my neck. Right. And so when we talked about that, it was like, maybe you had an arterial dissection lower in the chest, like, you know, just kind of of going with everything and anything. And at that point, my husband sounded.

[Dr. Nance]

Like you had a Venus embolism.

[Rita]

So I'm glad that you actually brought that up, because when I actually.

[Dr. Nance]

I finally solved. Took me three hours. Yeah, right.

[Rita]

Yeah. So the crazy thing is, is my husband and I actually think there's a possibility that that's what it was. Because the four weeks prior to the onset of all these symptoms, which is rare, right, for, like, an embolism to. An error embolism to wait four weeks to happen. But four weeks prior to the onset of my symptoms, again, I had a very, very bad respiratory infection. I did have to go into the hospital for that bacterial pneumonia, where I got a Z pack. And when I was there, the corpsman in the emergency room actually gave me a IV saline fluid bag because I was dehydrated. And there was a malfunct in the bag where it emptied immediately into my arm without any pause or drip. It just immediately flooded, and within seconds, the whole bag was dispersed into my body. And when it happened, I nearly passed out. And my husband jumped up and yelled and gestured for the guy to come back in, and he. He ran back in and realized that there was an air. And the whole bag was gone. It was already all in my body. And he immediately took the IV out. Blood shot all over him. And you can actually develop an air embolism from something like that. But the timeline doesn't make sense. Could an air embolism just hang out in your body for four weeks until it. It then moves up your neck? Like, what is the likelihood of that? And so I guess it you know, just all kind of goes back to trying to put the picture together of what could have possibly prompted all of this, but not necessarily knowing exactly what has caused it. There's just theories. But after seeing that neurologist, the pressure started to rise back in my head again, start to impact my vision. So the lumbar puncture didn't resolve that. It didn't take it away. My body just kept making too much fluid so it would just build up all over again after the lumbar puncture. And whenever I moved into the care of this neurologist. He said, you know, we're going to try something different. This anticonvulsant in particular seems to be pretty successful in treating iih, and I think it'll work for you, so let's give it a try. You prescribed it to me. It's fairly cheap. I took it home. And with that medication usually comes the side effects that are incredibly unpleasant. It impacts your cognition. There's also, for some people, there's the mental health perspective of it. You know, increasing symptoms of depression. It's been linked to suicidal ideation for some individuals. And luckily for me, this medication has worked amazing. But I just have a very difficult time recalling my words.

[Dr. Nance]

Well, it sounds like you've at least found something that has brought you some relief.

[Rita]

Mm, yeah, absolutely. I do still have residual effects of, you know, my ear issues. And although my vision is quite stable and I no longer have any of the vision snow or the after images, lightning strikes or sensitivity to light, I do still occasionally get, you know, the whooshing through my ears and within my vision. And I think the point of sharing my experience, I was really apprehensive for various different reasons because it's hard to say that I was part of a system that essentially I felt like, like failed me. You know, this is a very intimate, raw part of my life. But my purpose in sharing this with other people was in the hopes of if someone else out there was hearing this and said, like, this is similar to what I experienced, because had somebody told me that this is what it was, or I had any sort of inclination, you know, eight, seven years ago, the life that I would have led would have been so different because it took so much of my life, it took so much of my children's childhood away from me because all I could focus on was trying to stay alive in those moments. And it makes me incredibly sad because now I'm in this state of trying to envision what life looks like in the future. And to go back to what I said, it was never because I wanted my life to end. It was because I didn't see myself being able to live with this condition without it taking my life because of how severe it was, and there was potential that it would have taken my life had I not gone to that doctor that day. I'm just one year post my diagnosis, and I think last year was a really difficult year. I had a look at this flawed healthcare system and it feels heavy. It felt heavy, as though, like there's this overarching reach or theme of we're doomed with this healthcare system. But I think acknowledging that both can exist at the same time. Right. Like we can have an exhausted healthcare system, we can have a flawed healthcare system, we can have a caring health care system. But nonetheless, it can be really difficult to navigate when you have something so chronic and something so complex. And this platform in itself, I think is going to highlight even just some of that external validation that as we're talking, women need in order to navigate that, because it's incredibly isolating.

[Erin]

And I also want to say back to you, I know sharing your story was probably really hard, especially since I don't know if your husband's still in the military, but that's always a complicated situation as well. And I think that I had a friend who went through some medical situations through military doctors and had similar experiences. And I'm going to make her listen to this episode because I think she will feel less alone in what she experienced.

[Dr. Nance]

I think every, I think every military spouse should listen to the podcast.

[Erin]

I think this will probably put on military Wives pages. You know, they love the Facebook.

[Rita]

They are a mob, you guys. Like, they run deep. Yeah.

[Dr. Nance]

Well, thank you, Rita, so, so much for sharing your story, for being so open and so vulnerable. It's really a privilege to hear your story. And like many of our other guests, you know, you got a whole nother degree and career in the time that you had this diagnosis. And so I find that the most common theme for our, our guests are that they come out stronger and more educated and better advocates and better people.

[Rita]

Oh, yeah, 1,000%. And I think that what it does is it induces a level of curiosity and with that you can't help but just grow and continue developing. And I feel so fortunate for even how diff difficult it was. I think it made me a much better, well rounded person. And I love how much it added to my ability to show up for people in a very different capacity today. So I'm very, very as toxic positivity as that sounds. I hate that does it? But it does.

[Erin]

It sounds toxic at all. It sounds like the right level of positivity. There's nothing wrong with looking for a silver lining. You can still admit that a lot of things sucked while also admitting you learned a lot and grew from them. That's not toxic. That's. That's optimism.

[Rita]

Yeah, Hope.

[Erin]

Hope is not bad.

[Dr. Nance]

Thanks, Rita.

[Rita]

Thank you. Yeah.

[Erin]

This is the first time we've ever disagreed on anything in an episode, which was wild. But I think at the end we can all agree that some of this journey was affected by some of the biases that exist in the healthcare system. And I know we talked a lot about that in this episode, but I think what I'm taking away from this episode is that is broken as some parts of the system may feel that there still is hope and that it's people like you, Erin, doing work like this and people like our guests today being brave enough to tell their story that will make the change that the system needs.

[Dr. Nance]

Yeah. And I think one of the things that I have really learned in my time as being kind of this advocate online is that one of my gifts is being able to see both sides. And just the fact that you can acknowledge both sides is something that is severely lacking, especially I think amongst the medical experts and that I think you talked about it so brilliantly. That, and also Rita as well. You can have a really messed up health care system and also a healthcare system that is, is life saving and phenomenal and you can meet doctors who unfortunately don't give you the time of day. And then you can meet doctors who go above and beyond to make sure you know that you're taken care of. And those two realities can exist within the same system.

[Erin]

And I think the more we can do to help people get, get to the doctors that will provide that life saving treatment, the better. So it was, it was. I think this is the first time we've really like dug this, this deep on, on what I think are some sensitive subjects, but I think it's important and I'm, I'm proud of us. We did it.

[Dr. Nance]

Well, thanks for listening.

[Erin]

Thanks for listening.