C (2:42)

Yeah, I was like, the shock that went over your face. You're like, yeah.

A (2:46)

I was like, I listen to your show, but I forget how it started. Starts so well, too.

C (2:53)

And it's my show.

B (2:54)

Well, you know, we usually start the show by talking about what life was like for you when you're young. Would you consider yourself pretty healthy growing up?

A (3:03)

Yes. I was like, I guess I remember being. Being sick, but My family. So let's go back a bit. So youngest of five, four older brothers and my parents, they were involved, but they also prided themselves. They, they called us Viking babies because they were like, viking babies don't cry, they don't complain. So we grew up not really going to the doctor and just sort of suck it up. You'll get over it. So going to the doctor was never really seen as like, you just get over it. Out of sight, out of mind. Like you don't really need any sort of medications. So still to this day, sometimes I'm like, I don't really, really need to take a Claritin. But then I take it and then I'm like, oh my, oh my gosh, everything's better. So yeah, I was like, I wasn't that sick. But I, I guess I just don't know because we, we just don't talk about things, we don't bring things up, we don't start conflict to this day. So growing up is always just like, suck it up, figure it out. So we were pretty independent kids. Elementary school was good. Middle school. I mean, being a teen girl is awful.

B (4:12)

Being.

A (4:15)

The understatement of the century. I know, I know.

C (4:20)

Being a teen girl is the worst.

A (4:24)

Yes, yes. But lots of things started changing where my oldest brother was sent away because he was running with the wrong crowd. And then the three other brothers, brothers chose to go to boarding school. But then by the end I was left at home. So I was the only, only one there. I sort of lost like a lot of our core support network. And so I was at home as an only child, used to being the youngest of like a big group. And that was when my anxiety and depression and suicidal ideation started, was when I was probably about 12, 13.

C (5:09)

That is a rough time to go through all of that because, like, you're also not stable. Right? Like, right.

A (5:17)

You're not stable on a good level, much less.

C (5:19)

Yeah.

A (5:21)

So middle school was rough. I was just really depressed and I guess I started self harming in middle school. But it sort of traveled on through high school a little bit. And then it was also high school, I started getting migraines. So I had chronic migraines with a persistent visual aura. So I started migraine medication and then I started antidepressants. And we had the psychiatrist that didn't, he didn't really taper on and taper off really well. And so I had kind of a major breakdown.

B (5:57)

So were you able to clearly differentiate issues between your mood and your like, physical Migraine type problems.

A (6:08)

I never correlated or connected that I just thought it was. I was like, oh, I'm sad. Oh, I have headaches. But I did get migraines a fair amount. But the worst part was the chronic visual aura. And so that was also the first time that I learned not to ignore it. But I could. I trained my brain to not always focus on it. So when I was in high school, I described it as. I was like, I've never done shrooms, but this is what I feel like it would be like. So if I look at where the ceiling meets the wall, it just sort of do, do, do, do, do do do do do do. So it. It sort of like moves and then there's stars and stuff. But. But I can go about my life. And I learned how to just sort of ignore it. But that was sort of when I. When I learned because it was just sort of like, well, migraines. Migraines happen.

C (7:01)

Can you explain what a visual aura is?

A (7:03)

So before you get a migraine, some people get sort of these visual alerts. So it can be bright lights or spotty vision. You lose your peripheral vision, but my brain now just ignores it. So I pretty much was always having that, but wasn't always getting headaches. So they were like, oh, that's not normal, but not unheard of. So that was my first sort of medical mystery, if you will. So jumping forward a few years, still pretty depressed. I ended up dropping out of college and checking myself into a psychiatric facility. So that's on. On my record. So I would did inpatient for an extended period of time, and then I did outpatient. So essentially, I had an entire year of really intense therapy and DBT skills and all of this stuff. But that was the first time that a doctor had said to me, I think your migraines are related to your anxiety. If you don't let these feelings out, your body will figure out a way to push it out. So I was like, oh, that's interesting, and just sort of went along with my life. So after inpatient, I ended up moving up to Seattle. So that was 2011. I moved to Seattle. But then late summer of 2015, I started getting tingling in my hands and feet. And it wasn't a lot, but I was like, oh, this is odd. This isn't great. I don't like it. But I was still able to live my life. And I was like, well, it's just like a weird quirk. But as we know, I am not the best at going to doctors or talking about feelings or how my body feels, any of that stuff. So I just sort of went about my life. And then a few months later, I was still very active. I had a dog, I was hiking all the time. And I. I was trying this intramural sport and it's a stick and ball sport. And so it was sort of like field hockey, but I whiffed the ball and hit the ground and my back just went out. So I was in a lot of pain, couldn't get up all that stuff. Finally go to the doctor, get prescribed 12 weeks of physical therapy. Then after that 12 weeks, I was like, yeah, it's okay, I guess. But the numbness in my hands and feet was progressively getting worse. And it got to the point where I was getting nervous driving because I couldn't feel my feet. And so I just started walking and ubering everywhere because I was like, ah, yeah, I can't really feel my feet. Like, I couldn't really tell the pressure points on the gas pedal and whatnot. So I go to my primary care provider and she is immediately like, that sounds like Ms. And I was like, wait, what? So she gives me a neuro referral. I go, there, have. I have to wait a couple of weeks because my insurance isn't super great at this point. Go to the neuro appointment. And he immediately is like, it's not Ms. You don't have to worry, but there's a very good chance that this is a tumor on your spinal cord or in your brain. And I was like, oh, okay, great. So I'm a little panicky at this point. Yeah, as you should be.

C (10:52)

You're like, low key. I'm stressed about a tumor on my spine. Duh.

A (10:56)

Yeah. But then it was just sort of like, what? Well, your symptoms are still pretty recent. We can get you in in about two months. So I have this waiting period of waiting for the MRIs with and without contrast. So eventually I get in the MRI and do a bunch of imaging. I think I had a couple different images done. And he's like, oh, great news. It's not that. And I was like, okay, but what? What is it? And he was like, okay, we can run a couple more tests. And so I don't know what it's called, but essentially he did one with like a nut. It's checking the nerve reaction. And so it's a pretty big needle that he like, sticks into your muscles and then sort of shocks it. And then there's a readout that says how your nerves are reacting. Do you know what that is as.

B (11:53)

Yeah. So this is when people say that they have, like, nerve studies. It's actually two separate studies. It's emg, which tests the muscles, and the nerve conduction study, which tests the velocity of the nerves. So the EMG is looking for damage to the muscle. Now, if you don't have any electrical input into the muscle, the muscle is going to show damage. The. The nerve conduction is testing how fast is the.

A (12:19)

The.

B (12:20)

The signal traveling?

A (12:21)

Right.

B (12:21)

They're sending you a shock. They're traveling. How fast is it going to your brain, back to the muscle? So that's testing, really, the timing of the nerve. This is. Versus the EMG is testing the strength of the muscular contraction.

A (12:35)

Okay. Yeah.

C (12:37)

It wasn't a whole new language.

A (12:39)

Yeah, yeah. It. It wasn't great because it was just a bunch of needles stuck in my forearms and my calves and my thighs. And it goes in. In my mind, it was like, went in 3 inches. It probably didn't. It was not that deep, but it felt like a lot. Especially because it was a lot of pokes a lot of times. Yeah.

B (13:00)

This is certainly an un. I have had it myself. It is an uncomfortable test.

A (13:04)

Yes. And I will say I had hit my deductible with all of this imaging. So I was like, okay, we're just going to do everything I can because it's free. It's not free, but insurance. Insurance makes no sense. But I was like, okay, I got to get everything done.

B (13:19)

The medical version of girl math.

A (13:21)

Right. Okay.

B (13:23)

My deductible. So it's free.

A (13:25)

Absolutely. So we got the emg. And then he was like, okay, yeah, so that was kind of inconclusive. Come back for a muscle biopsy whenever you have time. So he was like, I'm not concerned. You seem fine. And at this point, I think just all of the other stuff going on in my life was just sort of taking the majority of my focus. And I was like, well, I. I can walk. I can do the things. I'm still living my life. And my cousin was diagnosed with leukemia, and she was going into hospital and was probably going to need a bone marrow transplant. And she called me asking to be her primary caregiver. And side note, she was in Singapore where her mom lived, but I was like, she asked me. She doesn't ask for anything, so I'm gonna go. So I quit my job, go there. And that was a pretty rough month where I would wake up, eat breakfast, take the MRT to the hospital, spend six to eight hours in the hospital, and Then walk back. So I was walking a couple miles every day just back from the hospital across the city. So it was a lot, to put it lightly. It was a lot, yeah. So I wasn't really focused or even looking internally on what was going on with me. I was just focusing everything outward. So I did that for a month and that was really, really emotionally draining because I was just taking a lot of it on. And then finally I hit my breaking point. Not great for your mental health, turns out. So I left that and then went back and I got the muscle biopsy and I got a hole punch on the top of my foot, in my calf and on my forearm. And then that comes back as he was like, we can't really find what's causing this, but I think you just need to accept that you have the nerves of a 60 year old diabetic. So you just have, you just have polyneuropathy. You're just one of the lucky people that has no explanation for why. And I was like, okay, great, thanks for your time sir. So once again just sort of like it's whatever, this is my life, I'm just going to go about living my life.

B (15:55)

And again, this is not a diagnosis, this is a description. Poly neuropathy, meaning multiple nerve dysfunction.

A (16:03)

Yeah, they called it sock and glove polyneuropathy. Yeah. Yeah. Not at all.

B (16:09)

I mean that that term, stocking and glove neuropathy is used for people who are pretty significantly diabetic who lose the sensation to their fingers and their toes. These are the people who need the amputations of their fingers and their, their toes. So. No, not a 20 something year old. No.

A (16:28)

Yeah. No. Yeah. But then once again I was just sort of like, okay, it could be worse. At least I'm not dying of cancer. At least I don't actually have a brain tumor. So his plan was just sort of like here's some gabapentin for when it gets painful. Because it, it is sort of, it can be painful. You know when your hands are really cold and you run them under hot water and it's just sort of that like burning sensation. It sort of feels like. Yeah, yeah. And so it sort of feels like that. Or if you're like arm or foot falls asleep and before you move we.

B (17:06)

Call that a paresthesia.

A (17:08)

Yeah. So it just sort of feels like that. And then right around this time we was when I started having a lot of GI issues.

B (17:16)

I don't want to sound like I'm probing but because I kind of know the medical outcome. Can you Describe what the GI symptoms were.

A (17:28)

My body sort of stopped processing high fiber stuff. So this might be tmi, but that's what we're for. Medical stuff. Medical stuff is gross. Let's just be real. So quinoa, lentils. It would just immediately come out one way or the other, whether I would just vomit immediately or just have almost immediate explosive diarrhea. And then if I ate salads, pretty soon after, would rush to the bathroom and it would just be full leaves, like, completely unprocessed, undigested in the toilet. And I went to a doctor, and he was like, well, then just stop eating salads. I was like, but I. I like salad.

B (18:18)

And did you ever have any problem controlling your bowels or your bladder?

A (18:24)

Not my bladder, but there were some times that it was like, oh, I need to. To go to the bathroom and not make it. So essentially, I have a. Now I have a bunch of friends that have GI issues, especially now that we're older. And it just sort of like. Well, like, it would just be like, how was your day? Well, I didn't shit my pants today, so we're gonna count that as a win.

B (18:48)

But I. But I. But the reason why I'm. I'm harping on this is because this plays a very big role in your eventual diagnosis that I don't. Which we now are aware of.

A (19:02)

Still. Still to this day. Yeah. So that's just to say I had a lot going on, so. Right.

B (19:09)

So you continue to have the neuropathy, and now you're having GI issues. You've had a history of migraines, so what is the next kind of step? You've had these biopsies and nerve tests that are, for the most part, sound inconclusive. Mm.

A (19:26)

And so then I throw my back out again. And I was working in healthcare. I was working at an adult day health facility, and I threw my back out. And the nurse comes upstairs, and she was like, what are you doing on the floor? And I was like, I can't get up. And she was like, what are you doing? I'm sending you to my chiropractor on my lunch break. Like, I'll call ahead for you. And at this point, I was like, chiropractors. I don't know if I believe it, but hobbled in and then was able to walk out. And I was like, oh, my gosh. What is this? Witchcraft? This is magic. I know it's not for everyone, but it really helped me. And so I proceeded to go twice a week for the next few years. Just because my back was so bad and things would move, but they didn't stay set, if that makes sense. So it get adjusted. They were like, oh, things are moving. And they found out that, like, my hips were tilted and my head was tilted. And so they're like, your body's compensating for something. We don't really know what. Let's work on your core, like, strengthen your core so your back doesn't need to do so much work.

C (20:40)

Did they send you to pt@all.

B (20:45)

This.

A (20:45)

Time, like, physical therapy that time? They did not. But for a completely unrelated thing, I ended up at a podiatrist. And he was like, I don't really care what else is going on. Has anybody looked at your lower spine? And I was like, no, they were just worried about upper spine. And it was funny. He was like, everybody looks down on podiatrists because we're always looking down, so they look down at us. And he was like, of course, the neurologist wanted it to be this, like, super sexy, fun thing of a brain tumor, when it's honestly probably just a really boring thing. You need to get X rays of your low back. I did, and this is the first time I was told that I have degenerative disc disease, so I'm going to let the doctor explain. Degenerative disc disease.

B (21:31)

I mean, degenerative disc disease is you have your vertebrae, which are the blocks in your spine. In between those vertebrae are your discs, your intervertebral disc. The discs that are inside, inter, meaning in sandwiched in between the bones. On an X ray. An X ray can only show hard things, bone. It doesn't show the disc, which is made up of kind of like a gelatinous material. And so when you look at an X ray, you'll see these kind of blocks with some space in between them, and. And that black, blank space is where the disc should live. Now, in degenerative disc disease, on an X ray, you'll see those blocks either closer together or they'll be kind of pushed forward or pushed backwards. Sometimes you can see extra bone called osteophytes. So on X ray, degenerative disc disease would look like the blocks of bone are all kind of two clouds close to one another or look like they're almost rubbing against one another.

A (22:36)

And at this point, they're like, this is what it is. There's nothing you can really do about it until your disc is completely gone. Until it's bone on bone. We're not really.

B (22:48)

However, I want to say how how old are you at this point?

A (22:54)

Maybe 30, 29? 30.

B (22:59)

That's just, that just cannot be it.

A (23:01)

Maybe 32. 32. I, I'm, I'm terrible at math. I can't math for the life of me. But yeah, you know what?

B (23:08)

So like I, I cannot accept that a 32 year old on an X ray. Someone is going to, you know. Now obviously you know, the next text is going to be an MRI which shows more detail of the soft tissue, but that is, that, that's a hard jump to, it's a hard conclusion to come to in a 32 year old. And listen, like 100% people who are younger can have degenerative disc disease. You did have a fall a few years prior, so you could have post traumatic. For some people, like even I know in my husband's family, it runs in their genetics and they all have back problems and they've had disc herniations. So usually I would say in younger people it'll show up as a disc herniation before you get to the degeneration because the degeneration is really a side effect of a disc being herniated.

A (24:01)

So life just sort of goes on like that. I'm finally pretty mentally stable. I'm working out all the time. I was the most productive I have ever been in my entire life. I would like to working full time, go do a workout class, come home, walk my dog and then like go out on dates and stuff. So I was just living my life and just wasn't really thinking about stuff. And then my dog, who I'd gotten when I first moved to Seattle, I'd had her for almost nine years at this point. And then she gets diagnosed with a terminal bladder cancer. And so she has four to six months to live. So this is September of 2019. I'm really sad that my dog has died and, and through her death and the depression that followed, I gained about 30 pounds, so I'm about 200 pounds at this point. But so important part, living alone, no dog. And then we all know what happens. March 2020, the world shuts down. And so I am just left completely isolated and alone. And my mental health just spirals even more. Not great times. So I just am trying to figure out what to do with my life. My back, my back hurts, but I've sort of been taking care of it. But then the world shuts down. I don't have a reason to get outside and walk because I had been walking a dog for nine years. And so it just like felt awful to Walk and not have a dog. It's just so isolating. Really hard to live alone. People who were alone during that time know what it was like. So it was just incredibly, a lot of time, too much time alone. So I decided to leave Washington. And I will also say, because I left Washington state, I couldn't afford any of my medications again, so. So do not recommend it, do not do it. But I just stopped all of my meds cold turkey because I couldn't afford it. And then also I was just like, well, like, what else am I gonna do? Like, so I had to choose between staying somewhere where I could afford the medication or going somewhere and trying to just have a better quality of life. I'm sort of floundering and trying to figure out where to land, and so I'm sort of trying on places. But so essentially, I'm spending a lot of time driving cross country, and I'm camping along the way. And so my back is hurting. But I was like, well, I've been doing these road trips. I'm sleeping on the ground. Maybe my. My pad isn't as good as it used to be. Getting older, I can just sort of dismiss it and just being like, ah, it's not that bad. I'm still hiking. I'm still doing the stuff. But I remember I was talking to my friend's dad who was about to do surgery because he had really bad sciatica. And he was explaining it, and I was like, wait, I think I have that same. And so when I was going and seeing chiropractors, I was like, I have really bad sciatica. So that was like kind of a light bulb. And I was like, yay. I now have some verbiage to tell people, this is what's wrong with me.

B (27:33)

And just for people to clarify, sciatica is a painful nerve condition that it feels like it starts in your butt and then runs down your leg. And it's because the very end nerve endings of your spinal cord, the L5 and S1, which runs down the back of your leg, are compressed in some way, and that is called sciatica.

A (28:01)

So I was like, I have that. Yay. Because I still didn't really know what was going on. And I was just sort of like, ah, back. I. I have back pains. I throw my back out. Oh, this sucks. But, you know, you just sort of work through it. Yeah, take. Yeah, yeah, yeah.

C (28:20)

And I would also say it's amazing how much pain you can talk yourself out of when it becomes common, like, when it's your everyday experience, especially when it gradually gets worse. So you're just like, that's just normal.

A (28:31)

I'm just older. Your pain tolerance, I started explaining it, I was like, it's like the frog in the boiling water. Like you don't really note it. Like you're just sort of like, yeah, this is fine, this is fine, this is fine. And then it's immediately not fine, but we're still a ways away from that. And so my brother lived in Southern Arizona and he bought his dream house that was a 50 acre ranch that is 15 minutes outside of a town of 800. So I called them and I was like, hey, can I come? And I, I was not doing well mentally just because I was just so isolated in starting to be in a lot more pain, I wasn't a great joy to be around. But you know, fake, fake it till you make it. This too shall pass. It'll get like, you'll get over it. So end up in Southern Arizona to become part of the family unit of my brother. He has two young kids and a really wonderful wife. But it was just so incredibly rural and AT&T didn't work there. So then I had to switch phones to do Verizon and then there was a windstorm and so the Verizon tower got turned and everyone up the valley lost all cell service. So there was no outside communication. And at this point, my sister in law, she the job opportunity of what she got her master's for all of this stuff. It opened up. So I was gonna be home with the 3 year old while she went back to work. And she had been out of the workforce for a while, so she was nervous and I was like, yeah, I mean I'm literally just here, of course I can. So I'm up in the mountains alone with a three year old and that is my social circle. So not a lot of conversation going on, lots of talk about dinosaurs. And so just once again, incredibly isolated and in a lot of pain and just really lonely. So my mental health is low at this point. I just had constant sciatica and it would wake me up at night. I would wake up in pain, go to sleep in pain. I started drinking.

B (31:07)

You have yet to have a lumbar mri.

A (31:11)

Right? Because I'm in the middle of nowhere. I'm like going to a masseuse like once every three months while I'm there. So I'm just hanging out, surviving by a thread. Gotcha.

C (31:26)

And you're no longer going to a chiropractor, correct?

A (31:28)

No, Longer going to a chiropractor. I'm drinking a lot because I was like, I need to feel something else if I'm gonna fall asleep. I was starting to sort of go insane from the chronic pain. I was getting really sort of snippy. I was walking a lot. I found, I guess right around towards the end, my left leg started falling asleep. I would be walking. If I was walking for too long, my entire left leg, starting from my hip down to my foot, would just start tingling. I could still feel it. But.

C (32:08)

That'S not right.

A (32:10)

Right. Right. Like, pretty. Pretty obviously not okay.

C (32:14)

Not right.

A (32:15)

And then at this point, I'm like, okay, once. This school year, I'm gonna move back to Washington primarily for. They have Apple. Apple Health. Apple Care. Really great program, Free healthcare. So I end up back in Washington and my leg is falling asleep. I'm having sciatica. I'm driving. I get out of the car and twist my ankle, fall to the ground, twist my ankle down for the count. I was like, well, that sucks. That's really painful. Swells up. Not my first. In high school, I played a lot of sports and frequently sprained my wrists and my ankles. And so I was just like, this sucks. But not. Not new News. So that's March 2020, 22. And then just to recap, to keep.

C (33:17)

To keep everyone up to date on everything. So you're having pain in your back and sciatica, you're having dislocated ankles. Are you still having migraines and issues that. Are these related or unrelated? I'm guessing they're related in some regard.

A (33:32)

Right.

C (33:32)

So you're still getting migraine problems.

A (33:34)

Yeah, but that's also. I've been having those for so long that I. That it just. It's just whatever. At this point, it's not my main focus. My main focus is the walking, general. The pain, and, like, trying not to shit my pants. Honestly, that's okay. We gotta bring.

C (33:54)

We gotta bring it back down, back around to shitting pants. Which, honestly, when you're going through something like that, is such a debilitating thing because you can't go anywhere because you're constantly afraid you won't be able to find a bathroom or you have to, like, survey for a bathroom first.

A (34:07)

And.

B (34:07)

And your constant sprains.

A (34:10)

Yep.

C (34:11)

And constant sprains, which we've just added to the mix.

A (34:13)

Yes.

B (34:14)

Because I am telling you, there is one thing that can connect everything.

A (34:22)

And so I haven't been walking really out of shape. I think between my dog getting diagnosed with cancer and then the height of COVID I gained 75 pounds. So I'm. I'm definitely heavier than I was and literally just trying anything to keep the pain down. And I'm drinking heavily. I'm taking lots of ibuprofen take. I still have some gabapentin left over. So taking that. But honestly just sort of relying on gummies like CBD and thc, gummies and wine because self medication, you know. But chronic pain is hard. Just so hard that I end up getting established with a doctor because I wanted to go back to Washington for healthcare to figure out what was going on with my back because this had been going on for years at this point. So just, just help, help me. I don't know what's wrong. Help. And because I'm on the apple health, I am going to the residency clinic. So I never see the same doctor over and over. Just want to put in there if you have a specific issue and are not going for checkups. I would not recommend a residency clinic just because there's not the continuation of care, which I learned the hard way. And they would suggest I stretch a little bit more or go to physical therapy, but they couldn't see anything physically wrong with me because I still had the range of motion and everything. So I felt that they felt that I was just being dramatic or crazy. So I'm in Washington trying to get this help. I was talking to my good friend. Her grandma had passed away and she was like, I'm in grandma's house. There's a guest room. Like, just, just come get here and you'll figure it out. We'll figure it out. Once fall hits, we realize that I'm just sort of this like dark cloud of depression and chronic pain. And I'm not really using my word. I'm just like, yeah, my back really hurts right today. But not really going into it because being the youngest child, I. Or I don't even think it's the youngest child. I think it's just my family. It's just sort of like, well, if you can't do anything about it, like complaining isn't going to help anything. So what's the point of complaining? So I was just like, this is my burden to bear. I'm fine. It's fine. That's like my catchphrase. Turns out it's a consistent theme. Consistent. Yeah. Yeah, that tracks. And so Seattle's getting darker and darker. My friend's working as a nurse. She's. She's working in healthcare, so her job Was really hard. And she was leaving, and I would be in bed and come home and it seemed like I hadn't moved. But I was at the point where I could walk for about 20 minutes before my left leg fully fell asleep. And I was at the point where I had to choose. Do I go get food, do I walk my dog, do I go get groceries, or do I shower? On a good day, I could maybe do two of those things. I could never do more. So I was feeling. I was having a lot of feelings because I was like, my friend is letting me live at her house. I'm so grateful for this. We knew we weren't great roommates, but we love each other. And so she was doing this favor for me, but I was just feeling so guilty because I could just sort of feel her resentment growing and growing and growing. And it's not fun to be somewhere where you're not necessarily wanted. No, it's not that you don't want. Like, we're great friends, but it's hard. It's just really hard. So I start house sitting, become a professional house sitter. Because I was like, that's something that'll get me out of the house for long periods of time. So, yeah, start doing that consistently. Sort of Thanksgiving, 2022, at this point, both legs are starting to fall asleep. Not just the left leg, but the right leg starts falling asleep. And I find out that if I do squats, like, I can just stop and do squats. And it sort of relieves some of the pressure, some of the pain. Legs are still asleep, but I'm not worried that I'm going to trip, if that makes sense.

C (39:13)

So I mean, that you still haven't, like.

A (39:16)

Yeah. And so figuring out what it is. So this is when that's when I start going gung ho. Like, I finally get a primary care provider, theoretically going to the residency clinic, start going all the time. I think they were pretty dismissive of me because I do have a history of pretty intensive mental health issues. And I was drinking and I was continuing to gain weight. And so I don't think they could see past that to take me seriously and believe that my pain was real. And I guess at this point I was explaining it to my chiropractor and she was the first person to say, I think there's some. Something nerve related happening in your lower spine. If you get saddle anesthesia, that's what you need to look out for.

C (40:07)

What is saddle anesthesia? What does that mean?

A (40:11)

It's where sort of your saddle Area. So sort of your groin and upper thighs follow.

B (40:18)

If you imagine sitting on a horse where you sit on the saddle, that area, if that becomes numb.

C (40:26)

Okay.

A (40:26)

Yeah, yeah. She's the only person that's brought this up. I'm going to the doctor. And they're like, well, maybe let's switch your antidepressant to Wellbutrin. We use that for people with chronic pain. Sometimes that helps them. And I was like, can I have an mri? And they were like, no, we're not there yet. Like, we have to jump through all these hoops before insurance will approve it. All of this stuff. Let's talk about your drinking and your weight. And at this point, it was getting to about 14 minutes. I could walk for 14 minutes before my legs fell asleep.

C (41:02)

And it's like, how do you expect me to lose weight if I can't.

A (41:05)

Walk for more than 14 minutes?

C (41:07)

Exactly.

A (41:07)

Maybe we should cause a problem that.

C (41:09)

Would just cause me to be more active as a result. And plus, why does insurance get to make the decision of what we need? But that's the complaint I have on every episode.

A (41:18)

Yes, yes. Then end of. End of January, this, however. This, however.

B (41:25)

This. I can't. I can't even let it be a cop out of insurance. This is just gross negligence from the physicians and providers. I can't even think.

A (41:37)

Thank. Thank you. Thank you. I really.

C (41:40)

You so rarely say that.

A (41:41)

That you know it's bad because usually.

C (41:45)

There'S, like, a benefit of the doubt situation. Not here.

A (41:48)

Nope. Yeah, but I am overweight. I'm drinking a lot. I'm not even asking for pain medication. I'm just like, what is happening to my body? And this one guy was like, are you sure? Like, where are you on your cycle? And I was like, this is not my period. I have had ovarian cysts. This is a completely part of my anatomy. And he was like, well, sometimes low back pain. And I was like, do not.

C (42:13)

No, you should get to fight him. I think that that should be the rule, is that you should get to fight someone who says something that to you. Like, I'm sorry, sir. You said the fight words. And then fight club should commence. And. And you should get to fight them. That's. Oh, my God.

A (42:26)

And you don't get punished for it. You don't get punished for it. Because.

C (42:28)

No, no.

A (42:29)

It's like a jury of your peers. Yeah, a jury of your peers will decide.

C (42:33)

It's like, yep, you get to fight him now.

A (42:37)

Yeah. So end of January is the first time I get Saddle anesthesia. And the first time, because the first time it. So it was like, I'm house sitting. It's this really cuddly dog. He's like laying on my body and there's some things that you don't know until you know. And so he's laying on me and I'm like, oh, this is what they mean by saddle anesthesia. It's the first time that it's happened. I push him off of me and it goes away. And I was like, okay, that's weird. Don't love that. But okay. So the next day it happens again. The dog is on my body, saddle anesthesia goes off. His mom's coming back that day. So I'm just like, you know what, I'm gonna take myself to urgent care. They said like, good idea. My chiropractor said if this ever happens, go. And I was like, but it's not happening right then. So trying to explain it. And I was like, yeah. So it's getting to the point where like 14 minutes, both legs fall asleep, the saddle anesthesia has happened. I hear that's really bad. What I've googled isn't great. Can I get a referral somewhere? And the person was like, well, if it goes away, then you're fine. And I was like, but I'm not fine. So that the first urgent care tried to get me a neuro referral and ortho referral. They both got denied by insurance. So I'm just going back to my primary care provider. And I'm like, something is wrong. I think it's nerve related. The saddle anesthesia, it's coming and going. Help me, like. And they're like, well, they're. And they're like, well, what's your pain like? And I'm like, oh, well, it's probably like a, a six or a seven, but it can get up to an eight or a nine. But like right now we're, we're about a six or a seven. Also, I want to be a bother, but also like, don't be a bother. So it's just sort of like this conflicting thing and everybody's just sort of like, yeah, you're fine, you're fine. And then in March, I'm flying to Texas. And this is the point where I'm like, I think I need to request wheelchair assistance. I don't think I can make it through the airport. And I was like, I think I'm being dramatic. And so I was talking to my friend who has her own hip problems. She was Getting prepared for a hip replacement. She was like, you know what? It's a free service. If you think that maybe you need it, just use it. And so I was like, I don't know. I think I'm being dramatic. I think this is, this is a little overkill. But also, I don't want to carry my backpack through the airport. So I decided to do it. And then on being wheeled through SeaTac is when my legs start shaking uncontrollably and I'm just sitting there and I was like, this is odd, but I also don't really have feeling in them. And I was like, I. I think I can stop. I think this is in my head because so many people have told me that. So I was like, I don't know. So then they're like, think really, really hard. Can kind of get them to slow down, but they're just shaking. And I was like, huh, this is really, this really isn't right.

C (46:09)

I'm pause for a second. You, you were so gaslighting yourself because you'd been gaslit by others that your legs are doing, I don't know what dance down below you can't control. And in your mind you go, that's, that's my fault.

A (46:26)

Yeah, I'll just, I'll just concentrate a little bit more.

C (46:29)

I made this up.

A (46:30)

Part of me was like, I was like, well, maybe part of me, like, maybe subconsciously my body wants to look disabled because I look like maybe that's just what it is. But then I was like, yeah, yeah, I. I am well aware. So that was Thanksgiving and I'm trying to keep a semi normal life. I'm still trying to see friends, but it's also like, I can maybe go out once a week. And then I'm like scanning chairs and just being like, it has to be a high enough chair. It needs to have a back. I need to be able to move the chair in case I need a different position. So I'm getting pretty picky and I'm not like a super fun joy to hang out with. Also like drinking a lot because pain.

B (47:26)

So yeah, you don't really have one thing to tell anyone. What is wrong with you?

A (47:31)

Right, right, right.

C (47:34)

Just like roll up and you're like, I hurt a lot and I'm kind of broken and these things happen.

A (47:39)

Like I can't, I can't feel my legs. Sometimes it's worse than others. So then take the wheelchair escort back home back to Washington immediately, go into back to back house sitting gigs and the last one Is a really great client. And she has two high needs cats. One needs insulin twice a day with his food, and the other one needs an inhaler. Otherwise, she has a coughing fit and, like, passes out. So very high needs cats.

C (48:11)

I've never seen a cat use an inhaler before.

B (48:14)

I thought that was, like, the. The fur ball, like they were doing.

A (48:20)

Yeah, sorry.

B (48:21)

How do you get a cat to do anything?

A (48:24)

It just. The logistics don't work out.

B (48:26)

I don't mind.

A (48:28)

Yeah, it's. It's a steep learning curve, I'll tell you that. And once again, if they don't get these things, they will die. So at this point, I can barely walk for seven minutes. And I'm walking around these, like, nice neighborhoods. And then, like, if there's not a bench nearby, I just am, like, laying on the sidewalk and my dog's just hanging out. And then right around this time, I had started going to the acupuncturist, who was like, so when you start with me, it was the only. I was looking online for acupuncturist in the area. He was the only one that had sort of immediate availability. So I was like, you know what? Nothing can hurt at this point. Like, I'm in so much pain, and all anybody has told me is like, let's talk about your drinking. And then it's just like this vicious cycle of I'm drinking because of the pain. The drinking makes my depression worse, the pain makes my depression worse. So drinking. So it just sort of.

C (49:25)

Yeah, it just. It's an. It's a.

A (49:29)

It's a cycle, and they don't help each other. And at this point, I started a notebook for when I went to urgent care. I had this, like, these are the interventions that I've done. This is what I've done. And it's just sort of. The tremors started on March 9th. It got really intense on March 11th. March 21st, I went to physical therapy. The next day, I went to chem chiropractor. The 24th through the 26th, immediate burning, subtle numbness. As soon as I stood up on the 25th, I woke up crying and nauseous because of the pain. I'm showing up to the doctor's clinic every day and saying the same thing. Like, my legs are falling asleep. I can't walk. I can't stand. And it got to the point where it's like, if I'm standing for seven minutes, the saddle anesthesia goes it. I can alleviate it if I lay down. I have a bunch of nurse friends. And I have an entire page of, like, punch words that I thought would get attention. So I had like, concerned, uncomfortable safety, quality of life, concerned about quality of care. I'm uncomfortable with the progression and speed of the pain, the lack of a prognosis. Like, I'm in so much pain that I can't even really read my writing. So this is, like, what I was taking with myself to doctor's appointments to remind, like, my, like, bullet. I was like, say these words. Someone will listen to you. And they weren't. And I also was trying to keep it together because I didn't want to come across as, like, this hysterical woman. Like, I also grew up not crying or showing emotion. And so I was just like, very. A flat affect of just being like, these are my facts. Can you help me? And they're just sort of like, eh, sorry. And at this point, I have a really high pain threshold because my normal was constant pain. So it took a lot for it to be even more pain. And then just like, looking back at my medical history, it just sort of like, just suck it up and your body will adapt. So my friend came over for dinner and I was like, maybe it is all in my head. Maybe this is like, maybe I am making a bigger deal of this. And my friend looked at me and she was like, zoe, you literally have not gotten up off the floor. You are eating your dinner while laying on the floor with your legs up the wall. This is not normal. And I was like, oh, I guess so. Like, yeah, this is weird. Right? Right, Right. Like, am I crazy? So just needing. Needing, like, some people to tell me that, like, it's.

C (52:07)

I honestly, I feel like this is a product of us not being taught to trust our bodies. Like, because, girl, you are, like, barely able to walk for 14 minutes. Half your body's not.

A (52:21)

Most of the time, the saddle anesthesia is coming and going. But then I've been going to urgent care. I've been asking for an mri.

B (52:27)

They're like, you're just in stage four of the stages of misdiagnosis, which is. This is literally correct. This is part of the process.

C (52:38)

But I feel like you've been in this stage a little bit longer than most people we talk to. I'm like, I'm low key, like, kind of impressed at how much you've been denied. Denied this.

A (52:46)

Well, it's like I've sort of had, like, weird things popping up for so long. I, like, am depressed.

B (52:54)

Maybe my depression is anger.

A (52:56)

Yeah.

B (52:57)

Yeah.

A (52:58)

Well, in preparing for this, I Was looking through all of my. My chart notes and just the amount of, um. I don't know if you got any of the. I sent some of the photos to Molly of the communications with the doctors and just how dismissive. And then I'm also just sort of like, hi, me again, like, trying not to be a pain, but also advocating for myself. And then I was just sort of like, I just need to put this in writing. I just want it documented. I want. And then they'll be like, okay, well, I don't think we're there yet. Let's, like, try another eight weeks of physical therapy. And physical therapy was painful, but also, I should say, I never really lost my range of motion. And I was only 35. I had never been in.

B (53:45)

Because physical therapy is treating the wrong thing at this point.

A (53:49)

Yes, I can't.

B (53:50)

And I am holding my tongue for a very long time.

A (53:53)

They're just trying to relieve. They're trying to, but they're to trying. They're trying to relieve the sciatica and all of this stuff. And so I guess before my friend came over for dinner, it was like, okay, as soon as this house gig is up, I'm gonna go to the ER in Seattle. Something's wrong. And so finally I'm like, okay, I'm gonna go to the ER Saturday morning. This gig is up Friday at noon. The owners in had been in Europe, so I couldn't leave these cats alone. Because I feel like that's an important part of the story is like, couldn't leave these cats alone. So I was like, okay, as soon as this is done, I'm gonna go to the ER in Seattle. I'm gonna go to uw. It'll be fine. And that morning, the owner's gonna be back at noon. And I went up the stairs, sat down on the toilet, and I was like, I don't think I can pee. The second I sat down on the toilet, the saddle anesthesia came, and I couldn't feel it. So. So, like, the inside of my body is numb, and the numbness is just going higher and higher. So don't remember if I peed or not. But I was like, I. I don't think I can. And then. And I'm literally army crawling into the room to try to clean up my stuff. And my friend is like, on a business call with her headphones, and I text her, and I was like, I. I need your help. I can't do this. And I'm just, like, breaking down. Cause I was like, I can't shower, I can't clean the house. I can't pack. And she was like, yeah, so I'm taking you to the hospital today. Like, we do not have time for this. And I was like, yeah, you're probably right. My friend is such a. Such a lifesaver. So then we go and my friend has to go pick up her kid. And she was like, I feel really bad about just dropping you off at the front door of the er. And I was like, it's whatever, man. I've perfected the art of loitering. I can just hang out anywhere at this point because I've been waiting for the doctors so long. And I was like, you're fine. Whatever. Check in. And the lady at the front desk after I, like, give her my insurance card and my name. And I was like, do you have any idea how long this is going to be? And she was like, you know what? Honestly, you're here on a Friday night. You probably should have waited till Saturday morning. And I was like, I know, I was trying to do that, but I. I am here because I am having an emergency. And it was only about a two and a half, three hour wait. But at this point, I am curled up on a bariatric chair. I was like, is there any place I can lay down? Do you have a cot? Do you? Like, I was asking for a sheet so I could lay down on the floor, where I was just like, I think I might lay down if they don't. If they're not here in the next 20 minutes, I may lay down on the floor in the ER waiting room. So finally I get put in a room and this nurse comes in and he was just like, what brings you in here today? And I was like, let me pull out my notebook. And he was like, I can see you're in a lot of pain. Can I give you something for the pain? And I just started bawling because I was like, I didn't even know I could ask for it because everyone had been like, oh, you're fine. Like, keep doing what you're doing, but cut back on the drinking. And he was just like, before you say another word, I need to get you something for the pain. Because he was like, it is painful looking at you. And I was like, really? Thank you. So get pain. First time. I haven't been in pain in years. And then he was like, okay, what brings you in here? And then I was like, I just need an mri, please, sir, please. And he's like, okay, we'll put you on the roster. We'll get to you when we get to you. And in that time, I go to the bathroom and sit down. Once again, can't pee. And the saddle. Anesthesia's back. And then I was like, I can't. I. I can't get off of this toilet. So I pull the little emergency string, and that's why they have them there. So then just these three men come in and just half. Half to get me on a stretcher, and they're like, okay, you're gonna be next in line for the mri. Get into the mri. Can't stop shaking. So they have to, like, tie me to the. The thing because they're like, you're moving too much. Can you stop? And I was like, I wish I could stop. Like, this is also just, like, having zero control over my body at this point from the waist down. And then before I'm even out of the thing, he forgot to turn his mic off. And he called the surgeons and was like, hey, you gotta come look at this. And so I was like, oh, so maybe I'm not crazy. Like, it is real. So then they came and talked to me, and they were like, so. So how have you been walking? And I was like, I haven't. And they're like, so you have three separate medical emergencies right now. So I had a herniated disc, a compressed spinal cord, and the compression had been going on for so long that the thecal sac had fused to my spinal cord, and I had. Is it quada equinus or something? What's it called?

B (59:09)

You have cauda equina syndrome. You have had cauda equina syndrome for months, possibly even years. I've never heard of someone having caudaquinas syndrome going on for so long without someone diagnosing it. Because it is so ridiculous that someone has not been able to diagnose you with that.

A (59:35)

Well, I never. I was never incontinent, But I was also telling. Telling people. I was like, when I would walk and the saddle anesthesia would happen, and they were like, if you're incontinent, that's an emergency thing. But I couldn't feel it. So I was literally sticking my hand down my pants to see if I had peed myself, because I could not tell. And that's why I asked a lot.

B (60:02)

You describe your. Your GI symptoms, and you said, yeah, like, sometimes I. Like, I could tell you. You have had the symptoms for a long time, and there are only three orthopedic surgery emergencies. Whereas, like, category one, life or Death. Okay, we've got compartment syndrome, which is when the pressure inside of your muscles causes them almost to explode and kill your nerves and arteries. You have necrotizing fasciitis and cauda equina syndrome, which is when either a mass or too much built up pressure at the base of your spinal cord chokes off the sensation and the motor functions of your legs and your bowel and your bladder. Those are the three medical emergencies. This red, red, red flag. Do not pass go.

A (60:59)

Yeah. And they were like, you were days, if not hours, from becoming fully paralyzed. And I was like, cool, cool, cool, cool, cool. That's great. So felt very justified that it was not in my head. I was just incredibly overwhelmed that someone was listening to me. And believe me. And there was a diagnosis.

B (61:23)

You were in shock.

A (61:24)

Yeah.

B (61:24)

Someone actually figured it out.

A (61:28)

I got the MRI that I had been asking for. I was like, the MRI would have shown these things.

B (61:34)

What happens after they tell you that you're having caught aquinas syndrome.

A (61:39)

They were like, you have to have emergency surgery. And I was like, oh, okay. Like, I. I don't really remember them explaining what was happening. I don't really remember signing the stuff I know I did, because I was like, what does that even mean? And they're like, you'll have immediate pain relief. And I was like, thank God. So I spent the night in the ER or not in the er. I, like, got moved up because they're like, you'll be the first appointment in the morning, and then next morning have. Have a casual spinal surgery, wake up, and it. The pain is gone, but definitely, like, pain. Because they just cut the different type of my body.

C (62:20)

Yeah, it's surgery. It's to be expected.

A (62:23)

Yeah, yeah, yeah, yeah. But in getting the fused. Thecal sac off my spinal cord, they nicked my spinal cord. And so I had to remain flat for 24 hours so that it wouldn't. Once again, I don't really. Like, this is where things just sort of get kind of.

B (62:41)

So you had a csf?

A (62:44)

Mm. Yeah. And then they were like, it was. It was a complication. Yeah, yeah. And so they were like, it was a complication, but well within the realm of risk that happens during surgery. They were like, it happened. They weren't stressed about it. I was on drugs finally. So wasn't stressed about it.

C (63:04)

You didn't care.

A (63:07)

Yeah. And then after I was able to sit up, the surgeons were like, okay, you look great. You can go. And the nurses were like, she cannot pee and she cannot poop. She cannot Go. So I had to like move to a different floor because the surgeons were like, we need the bed. And so I got moved to a different floor and it took another three, four days for me to be able to. Void is the like medical term for it. A lot of interventions there was. I don't. The one of the tricks that people swear never fails is warm prune juice with a pad of butter. That's supposed to be an immediate relief. Had to do that a couple times. Still no. Still no relief. Because.

B (63:56)

Because they're treating the wrong thing. Prune juice would be used if you had constipation. In your case, you have nerves that are not sending signs, signals to your rectum to allow you to poop. So all you're doing is priming your system with more. Okay. That literally your body.

A (64:18)

Literally, literally.

B (64:20)

That your body can't physically expel because the signals are not getting through.

C (64:26)

Aaron is heated today. She is going ham on this podcast, rare form.

B (64:31)

Love it. Well, it's really upsetting to me because it's my own feeling field. Although you've never come across orthopedic surgeon yet. So it's, it's. I'll give my field a pass, but it's in my wheelhouse. And in your case, I mean, I hope you're doing more than just a strongly worded letter to your insurance company who denied you a referral to an orthopedist and to a neurosurgeon because that was a delay in diagnosis that led to developing true caudaquina. Full blown caudaquina.

C (65:04)

All I'm going to say is Zoe, I think she's suggesting that there are money in them hills for this. Ridiculous. Not to be an opportunist, but I feel like in this scenario you basically couldn't have a life for many years in which you also gaslit yourself. So there's emotional damage there which then also led you to drink, which again probably wouldn't have happened if you did not hurt like hell every single day of your life. So I think you have a pretty strong argument that it significantly affected your livelihood, your physical and mental health. That's all I'm saying from outside perspective.

A (65:39)

But I don't know if this is true because this was also just sort of like sort of a blur. But the neuros students said that they made me a, A case study. So like, yay, people will learn from this. And then somebody was like, yeah, that's so that you can't sue them. So I have no idea if that's True or not? I mean, I, I'm. I wouldn't do the, the surgery, but then they were just sort of like, oh, yeah, like you. Yeah, no, and so that's not true. So I've just been existing on. They might.

B (66:06)

Yeah, they. They probably, you know, presented you for grand rounds because it is pretty. It's still rare to have cauda quina syndrome. The whole thing is that caudaquina syndrome is not a. It. It's a symptom of something. Right. So it's when that pressure on your. The base of your spinal cord got too significant, that's when you develop the cauda equina syndrome. But I have a question for you. After you have this decompression surgery to release the nerves and release the pressure, did you notice any change in your migraines?

A (66:50)

I still have the aura. I haven't really had a migraine in a while, but I still have the persistent visual aura. Yeah.

B (66:58)

Because I go back to, why did you develop this back? You know, the permeated discs and the tethering.

A (67:09)

I was told that it was just because I have degenerative disc disease. And they told me that. They were like, it usually doesn't happen in someone that's young. They didn't add any hardware. They just took stuff out because they predict that I will probably need another spinal surgery in the future. Because they were like, if you've already degenerated this much, you're set up for that. So.

B (67:38)

So what I will conjecture is that absolutely someone can have a. Just a large herniated disc in that region of your lower spine, which can cause cauda equina. But for me, this is just a symptom that is part of a larger problem for you. You started off this episode saying that you had numbness in your hands and your feet. Right. Cauda equina and hernia discs in your lumbar spine have nothing to do with numbness in your hands. You have migraines, you have GI issues, you're having multiple sprains. And for me, this is. Seems more of a failure of your connective tissue. All of the tissues that are supposed to help keep your body in line, right.

A (68:31)

In.

B (68:32)

In check. And I believe that probably you have had. And it's called tethered cord, but you probably had this tethered cord your whole life.

A (68:46)

Okay. Yeah. My cousin had that and had to have surgery when she was an itty bitty baby.

B (68:51)

Because it's most likely you have an underlying connective tissue disorder and that causes an Abnormality for how the tissues, you know, sometimes they're too flexible, sometimes they're too stiff. It's not to say that everyone who has a connective tissue disorder is going to develop a cauda equina or a tethered cord, but it really, it. It sets you up for it. And who knows, you might have had that inciting event, which was that hard fall, Right. Which could have knocked things askew to.

A (69:25)

The point where now it wasn't even a fall. It was. I hit the ground with a. Yeah. Or just sort of like a trauma. A trauma, you know, but then I was like, it wasn't dramatic. I just threw my back out.

B (69:38)

Zoe, where are you now?

A (69:41)

Well, everyone's like, how is it? And I was like, well, I can walk, so things are great. Like, I. I can do pretty much anything. Like, I still sort of, like, tweak my back there. Where the thecal sac was, is like this weird. This weird numb spot. So for a little while there, I didn't have full sensation in my feet, so I could tell if somebody was touching them, but I couldn't tell if it was a Pokemon, a tap, or a scrape. I just knew that something was touching it. I didn't know how deep it was. That. So that was just sort of like. They're like, oh, it's nerve damage. Should come back. Might not. Just wait and see. So one of the big reasons why I wanted to do this is because I was like, the numbness has come back. And so I'm just trying to process all of this other medical trauma and be like, you know what? No, I was right. I can stand up for myself and all of that before I, like, start another journey, medical journey. But I do have a really great set up. Like, I have, like, a good team of people that I trust, and a lot of them have kind of complicated health experiences. So they. They believe me more. So I don't know. I'm still. I was talking to my friend and I was like, yeah. Like, I think the numbness is. I think the polyneuropathy is coming back. But, like, maybe it's in my head. I don't. I don't know. Maybe I'm overreacting. Maybe I just, like, I've also been listening to a lot of Munchausen podcasts, and I was like, maybe I just, like, missed it. I was like, I hated the attention. I don't like attention. I don't want to be perceived. I don't want any of this stuff. But I was like, I don't know, maybe I just like, need another thing to, to do. And, and then we listened to one of your episodes and the guests said the exact same thing. It was just sort of like, I don't trust myself. Maybe this time isn't important. But I, I don't know.

B (71:41)

So, yeah, yeah, I, I, I think that by definition you had a tethered cord. The cord was stuck right to the overlying tissues. And whether or not that's something you had all your life or was secondary to trust trauma. The reason why I, I'm harping on this is because, and little, you know, Dr. Nance, Med School 101. When you have, think of the spinal cord, all right, you have the brain, the brain stem, the spinal cord, and then the cauda equina. Cauda equina literally means horse's tail. And so you have the, the spinal cord, which is like a tube, and then you have this horse tail, which is the nerves, the nerves that go into your butt that help you pee and poop. The nerves that go all the way down to your legs that help you walk. If at any point the spinal cord is stuck, okay, it's, think of it like you have a phone and the charger, right. In order for you to move, you need some slack in the line, right in the charger. But if there's no slack, then it starts pulling at the connection. So, so that tethered cord was pulling on your brain. So that's when you talked. The first thing you said you had migraines. This can go be traced back to your brain is being tugged on from your butt.

A (73:05)

Yeah. So I have a whole other medical mystery thing that I'm trying to figure out. But I am also going to concurrently try to, to see if I do have some sort of connective tissue thing, because I do think that is quite possible. But now I have more of a vocabulary of what to ask for, how to describe it, how to like, yeah, it might, but it is hard, it is hard to add to advocate for something that you don't know. Like you don't know what you don't know and Correct.

C (73:40)

And you know your body.

B (73:41)

Yeah, yeah, you know your body. And this is a line I, I read someone was talking about in different setting, but he said you have to collect the dots in order to connect the dots. And in your case there were some dots that you didn't even think were worth collecting. And so I think now there are so many dots for you. And in some ways that is a good thing because that's more data to help support what is the underlying problem.

A (74:15)

Yeah, yeah, absolutely. I hope with this new team of doctors that I can find something or they take me seriously and trust what I'm saying. And so that's what I hope for. But yeah, I will keep you posted.

B (74:33)

Well, thank you so much for opening up, for sharing your story. There's a lot of vulnerability in your story and I think it's just really going to resonate with so many women who have been gaslit for so long. And in the end, you really paid the ultimate price for being gaslit for so long to the point where you had a full on medical emergency, where trust me, you could have died, you 100% could have been paralyzed. But this illness is so, so serious that I said it's only one of three true medical emergencies in my field that we take care of. So I'm glad at least that emergency has passed and we hope nothing but the best for you moving forward.

C (75:28)

So one thing that I don't think ever made this episode directly as a quote, but we heard was that Zoe felt like at times she was punished for being honest with her doctor. And that is, I think, the crux of this lesson. And I hope that there are medical providers listening to this episode. Because when you go and get to that point where you want to deal with a health issue and you are finally at the point where you're like, I'm just going to lay my cards on the table because I want help, and then you're punished for doing that, or you're not believed for doing that, that does a level of damage that will not only affect this interaction with a doctor, but with every medical relationship you will have in the future. And I think that it is hard enough for someone to say, I am drinking, I've gained weight, I've had, you know, these other things going on in my life. I've suffered from depression. I've done a lot of work to deal with it. But it's coming back to then be met with a lack of credibility instead of compassion for the bravery it takes to talk about things that have a lot of stigma around them with your doctor. And I think that that is a fundamental change that needs to happen. Is that for people to feel more comfortable talking about those things with their physicians so they can get better care.

B (76:46)

Absolutely. I was just having a conversation with one of the world's experts on Ehlers, Danlos and Pots and he was saying that, you know, similar. We know there are certain chart buzzwords that set patients up for unfair bias. You know, bipolar, history of substance use. He was saying how now when a patient has been diagnosed with pots, and that's on their chart because there is still a large portion of the medical community who does not even believe that is a. A real problem, that they're seen as making things up. Right. So we always, as physicians, whenever anyone goes into surgery and the anesthesiologist goes, I need you to be truthful with me. I need to know, Right. Exactly what you're taking, how much you're taking. Patients should feel confident that that information is not going to be held as against them.

C (77:43)

Agreed. I think it's. I think the complicated thing about it is that a lot of these stigmas, and I think we talked about a little bit in the episode as well, are archaic, right? Like, mental health is a condition. It is a. It is a disease that you treat. And why should a person be punished for a disease that they were born with? We don't go say, saying like, oh, you have cancer, so I'm going to have to treat. Treat you worse, or not believe you because you had cancer.

A (78:11)

It's.

C (78:12)

It needs to be on the same level of the way we view any medical issue. And personally, and I know this is a controversial opinion, so this is world according to Anna, but I also believe obesity in a lot of ways is related to people's health and, and bigger issues than just weight gain. And I think when a person comes in and says, I've gained weight, the first thing a doctor should, should, shouldn't do is say, oh, it's a moral failing. Oh, you screwed up. Oh, you're not taking care of yourself. And instead ask what's happened to cause their previous behavior to change. Because I don't think people wake up and want to gain weight and especially don't want to talk about it with their doctor. So when someone does, it means something's changed, and that should be the discussion point, not the weight.

B (79:02)

Yeah, I think that's a great point. You know, a lot of these things that we talked about on the episode, even though you may never experience cauda equina syndrome, right. This is a very, very rare syndrome. The themes are, unfortunately universal, of feeling like your pain is dismissed, of having your symptoms downplayed, of getting denials because of insurance, having to move states so you can get any type of health care. And so I really thank Zoe for opening up. I said multiple times on this podcast that she was in a very vulnerable position to share some of the things that she did. And we're very fortunate for her to be this case for us to talk about. And I would just encourage anyone who has their own story, their own medical mystery, please send us an email. It's storiesmedical detectives podcast.com and the best way that you can help us continue to share these stories is to share this podcast with someone you know, to like it, to comment on it, to encourage more conversation around these very under talked about problems in health care. On that note, we'll see you next week.

A (80:19)

Sam.