Pain Into Purpose, Literally With Tayler Goectau

A  conversation with Tayler Goectau, known as Distaaybled online, about navigating EDS, POTS, endometriosis, ostomy and more. We yap about medical gaslighting, self-advocacy, digital education, and her next chapter as a patient-scientist at the Norris Lab.


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Transcript

Host Update And Guest Intro

SPEAKER_02 0:11

What is up, you guys? Welcome back to another episode of Sick I Swear. I am your host, Caitlin Roadie, and oh my god, you guys, I've been in this flair. I think the October slide and everything coming along with that has just been fucking my shit up, as well as I got a um occipital nerve block the other day because I went to a plastic surgeon to talk about a migraine surgery, which if anybody has any experience with that, like literally let me know because I am struggling to figure out whether that's something I want to pursue or not. Needless to say, I think a lot of us have been feeling not so well, but I am so excited for Taylor to

Early Childhood Clues And Sepsis

SPEAKER_02 0:57

be on here. She goes by Distabled online. She is an advocate and creates good content. She is now a patient scientist at the Norris Lab. Welcome, Taylor. It's good to have you. Let's just get into your journey. I want to know like where your first diagnosis started. How old were you and your process?

SPEAKER_00 1:16

Oh, gee. So my first diagnosis, I guess, was as a like newborn. Um, I was born with club foot and um muscular congenital torticollis, which is like in the womb, you like your head gets like lopsided, not just like regular infant. You know how like infants can have like weird cone-shaped heads and stuff. Mine was like actually lopsided, and I should have been put in like one of those baby helmets, but my parents didn't do that because they thought like it would just like fix itself, but it didn't. So, like those are like kind of like minor things, but that was like thinking back like what we know now, and then everything that happened kind of was like the first signs of something. Um, and then I was like a pretty normal like baby and toddler, I guess. There's definitely evidence in like my home videos of my autism presenting itself in different ways that, like, again, my parents as like first-time parents were like, oh, this is just like how kids are.

SPEAKER_02 2:21

Right.

SPEAKER_00 2:22

Um and then when I was four, I got sepsis and septic arthritis, which is like a really weird random thing to get like as a kid. And I got it in my hip, which is like a more uncommon joint to get it in. And there was like no real reason that we could figure out why that happened.

Scoliosis, Pain, And Missed Signals

SPEAKER_00 2:43

So they just were like, oh, she just probably like got strep throat, and then it like got into her blood somehow, and then like gave her sepsis, which at the time they were like, Yeah, sure, makes sense, I guess. But now looking back, we're like, oh no, she was immunocompromised, and so her body like didn't handle this virus well. Um, or bacteria, streps bacteria. Um, so that was like another thing. So all these things like seemed really random and off. And then I just complained of a lot of like I called it bone pain. Like I told my parents that my bones hurt, which is like the only way that I could describe it, I guess, as a kid. Right. And it was just kind of like brushed off, I guess, until I got diagnosed with scoliosis when I was 12 through like the sixth grade like screening, you know. Um, and so they referred me to like a doctor, but I had like a type of scoliosis, it was like farther up in my spine, so the like traditional hard braces didn't work. Like the hard braces are more for like rib location, but mine was like between my shoulder blades. So then we had to find like a special doctor who made this like special soft brace, and we had to travel like six hours every three months to like go get it adjusted and stuff. Um, but I complained of like such intense pain, and my spoliosis was considered like mild to moderate and shouldn't have been causing me that much pain. And I was also dislocating my shoulders because the brace, it was like a vest and the straps like pulled on my shoulders and it would cause them to dislocate. And I like got an x-ray and was like in the doctor's office with a dislocated shoulder. He's just like, Oh, yep, whatever. And I'm just like, that's fine, I guess. Um so again, no one like ever really listened to me. And I like fought my brace so hard. I was supposed to wear it 20 hours a day, and I would like wake up in the middle of the night and take it off. And like I remember emailing, I was like 12 or something, and I remember emailing the doctor being like, I just can't do this anymore. And so finally my growth plates closed, and so then we stopped wearing the brace because it's not really like beneficial past that point. And I then got my started my period, had really painful, heavy periods and was like bleeding through everything all the time. And they were just like, oh, you're just entering puberty, like that's just the way it is. Um so then I just like dealt with that throughout middle school and high school. I was getting a lot of abdominal pain that they were just like, you're just constipated, but I would like have to leave class because it was so painful. And that was really embarrassing because everybody thinks that you're like, I was like going to the bathroom, but I wasn't going to the bathroom to like try to go to the bathroom. I was going because I just like needed like to like be in pain by myself, you know.

SPEAKER_02 5:36

Yeah.

SPEAKER_00 5:37

To like the nurse's office. And so that was always embarrassing because then it just like looks like I'm like trying to take a poop for like an hour in the bathroom when you're like in seventh grade.

SPEAKER_02 5:47

And you're young too at this point. So it's it's so different. Yeah.

SPEAKER_00 5:51

Yes. Which I was super constipated, but like most of the time I knew like I've just always had issues with bowel movements. Um, and I've known like at what point I can like actually sit down to try to go, and like when it there was like no point in trying. And then

Teen POTS Diagnosis And Sports Struggles

SPEAKER_00 6:08

I was in, I think it was eighth or ninth grade. I don't remember, I think it was ninth. Um, and we were doing like in health class, like we were trying to figure out how to uh calculate our heart rates. So we would like like step up a step for like a minute, and then we would take our heartbeat for 15 seconds and times it by four. Like they were trying to teach us like how to calculate that. And when I did mine, my heart rate was like in the 200s, and my teacher was like, You did that wrong, redo. And so he made me do it again, and then he like calculated it. He's like, Oh no, this is right. So then he told my parents, and they brought me to a cardiologist, and I got diagnosed with POTS, which thinking back, I'm like, that is wild that that happened like in the order and like as quickly as it did, because I feel like it's really, really difficult to actually get an accurate diagnosis of POTS, like even now with the awareness that is Yeah, especially because you are so young, too. Yes. And I lived in rural Idaho and had like very horrible access to like good health care. So, granted, after the diagnosis, I didn't get anything after that. Like, they're just like, This is a diagnosis.

SPEAKER_01 7:17

There you go.

SPEAKER_00 7:18

Okay, yes. I think she put me on like one beta blocker, which never worked. Uh, beta blockers have like never really worked for me. They always made my blood pressure go too low, which didn't help the problem. Um, so then I just kind of dealt with like the occasional fainting, but like always having the height heart rate and everything. I got out of a lot of like like the pacer test I didn't have to do most of the time because it like genuinely was like so difficult. And then looking back, I was like, well, that's why I was so hard in second grade. Like our teacher, if we were getting fidgety, they'd make us like go run out the field and back. And it was because my body just like legitimately couldn't do it. I just thought I was like lazy or like deconditioned. It was like, no, I just like my body really couldn't do it. Um, so that was like my first like diagnosis that not necessarily made sense, but like started to kind of come together.

Birth Control Fallout And First Endo Surgery

SPEAKER_00 8:14

Um and then nothing else really happened until I got put on birth control shortly after that for just like because I was sexually active. And they were like, oh, it might help with your pain and bleeding and stuff. It didn't, it actually kind of made it worse, but it also made my mental health really bad, but I didn't know that. So I for like a year and a half was on this birth control, and it made me suicidal. Having panic attacks every day, like mentally destroyed me. It was horrible. And then I ended up coming off of it. I don't even remember why. Maybe I realized that that was what was being so crazy in my head. Um, and then I went to college, still in Idaho, just a different part of Idaho. And it was like a tiny bit better for healthcare, but not by much. I got a new OBGYN there and I was talking about my pain and symptoms. He was like, Oh, you might have endometriosis. And I was like, What's that? He's like, Well, we have to do surgery to diagnose it. So I got surgery, which he was just like an OBGYN who can do surgery, and now I know that that was like not the right person who should have been doing this, but he still diagnosed me. He said he found endo. He diagnosed me, um, but it was only an ablasion, so it didn't actually like take care of the problem. Um, so I was like, oh, I thought I was good. And then over the years, like since then, my like pain and symptoms have gotten worse. But then I finally had a doctor say, Oh, you might have hypermobile allergic and low syndrome. It was actually an immunologist because I was going in for random allergic reactions, which I had always had as a kid, but they were like getting worse. And so he was like, Okay, you're having you already are diagnosed with POTS, you're having these random reactions, and you're hypermobile, you might have Eller's Dan Low syndrome, and I was had never heard of it. And so I tried to get a referral to the closest like hospital that had a geneticist, and it was a four-year wait. So

EDS, MCAS, ADHD, Autism Considerations

SPEAKER_00 10:14

I never ended up getting to see them because I ended up moving. Um, so that's when I moved here to Oregon and finally got to like see actual doctors who knew what they were talking about. So I got like an official diagnosis of EDS through a geneticist. Um, I had to seek out like the genetic testing myself, like separate from him, because he was just like, oh, your textbook like hypermobile type. We don't need to rule out the other types. And I was like, um, yes, you do. It's literally part of the criteria.

SPEAKER_02 10:43

Interesting.

SPEAKER_00 10:44

Whatever. So I like had to go seek that out separately on my own. And like, fine, he was right. Like, I didn't test positive for any of the other types, but like it's part of the criteria. And if it was a different type, that would have been good to know. So I'm glad that I did. And then I got diagnosed with mast cell activation syndrome, which again that can be really tricky to like accurately diagnose because the testing is so like hit or miss. So really grateful for that. Um, I was already diagnosed with endometriosis. I got diagnosed with ADHD because my sister got diagnosed, and I was like, we are very similar in that sense. So I went and I got an evaluation and he diagnosed me, and then he was like, I don't do autism evaluations, but like you might consider that. And I was like, okay, and then I ignored that for three years.

SPEAKER_02 11:31

What age were you at this point?

SPEAKER_00 11:33

I was, I think 21. Yeah. So I was in my like third year of college. Um, I was just really, it was like COVID too. And so I think my ADHD issues got like exacerbated by like online, like COVID, like trying to focus and all that stuff. Um, and so that's why I like got the official evaluation, because then I could actually get treated for it. And so then I was trying different medications and stuff, and he was like, You should consider getting tested for like autism spectrum disorder. And I was like, no, thanks. And I just didn't um until just this past year.

Vascular Compressions And GI Failures

SPEAKER_00 12:10

And from there, I feel like it was just like this intense roller coaster of like, I saw like one doctor who finally like knew EDS and like could like comprehensively look at everything. And she just like made so many like referrals and was like, okay, I know this aspect can fit into here and blah blah blah. And I think I just got lucky with like the different doctors that I got set up with because then I got diagnosed with um like some vascular compressions. So I had surgery for mouse, I have nutcracker and SMAS. And um I got diagnosed, like we finally figured out, like I've always had been constipated, but it was like more than just constipation. It was like my colon was actually broken, like not moving, not working, not doing anything. Um, which felt a lot more validating than just being like, oh, eat more fiber. Like you're just constant, like there's generally nothing because it was blamed on my diet growing up because I have a lot of sensory issues related to my diet, and a lot of things hurt my gut when I would eat it. And so it was always just blamed on my diet, like, oh, you just can't poop because you just like eat junk food and stuff. So that was really validating that it wasn't like something that I was inflicting on myself, it wasn't just my diet, it was like something that like actually wasn't my fault. Um, my pots finally started getting treated because all the medications did not work for me. So I started doing infusion therapy. I did that outpatient for like two years in college twice a week. So I spent a lot of time at the clinic, and then finally I got a port placed and then was able to do it at home, which saved me so much time.

SPEAKER_02 13:46

What was your infusion? What was like the cocktail in it?

SPEAKER_00 13:50

Just uh lactated ringers.

SPEAKER_02 13:52

Okay.

SPEAKER_00 13:53

And then when I got the my port and was able to do it at home, then they gave me um ivisofran as well. Okay, because I was really struggling with my GI stuff at that point. Um, that ended up being kind of a blessing in disguise because now with my ileostomy, I struggle with dehydration. And just like my other GI stuff, like for some reason liquids are extremely difficult, which is weird because liquids should be like easily digestible. But liquids are really heavy. And so then when I was diagnosed with visceroptosis, which is um like my stomach, small intestine, and large intestine all prolapse into my pelvis. So my stomach, like instead of being where it's supposed to be, it's like literally down like at my rectum when I'm upright. So when liquids are really heavy and I like you know drink them, it makes all of my organs just like completely collapse on themselves, which is like why it can be so difficult to do liquids.

SPEAKER_02 14:49

Is that like an EDS thing?

SPEAKER_00 14:52

Yeah, yes. So it's considered rare. I think it's just not like I think that it's just not looked for because one, it's hardly recognized in literature, like it's really, really difficult to find

Ileostomy And The Seven-Foot Colon

SPEAKER_00 15:04

literature on it, and all of the literature is like really old. It's almost exclusively seen in EDS, and the type of testing for it all has to be upright, and there's not very much testing that you do upright, like already naturally. So the reason that they found it for me is because I was doing a um barium swallow with like an upper GI and fall like small bowel follow-through series for SMAS, and they stood me up to look at it, and my stomach completely dropped. And I was like, that isn't normal, and I had kind of already heard about it, and so I kind of had to like um encourage the radiologist to be like, oh, maybe that isn't normal. And he, I was like, you should go Google that. And he was like, Oh, it actually is a thing. And I was like, Can you please look up what the like um measurements or like whatever you have to measure when you're like writing it in the report? Because I was like, this would be really helpful to have like documented somewhere, and so he like looked up like how to measure, you know, whatever, and he finally put it in the report, and that was super helpful to like get the ball rolling on that because then I learned, okay, it's my colon is broken, like completely paralyzed, and I have endometriosis that has been seen on my bowel, and I have all my organs literally falling to the center of the earth. So there was like a lot of things going against my GI system, which like led up to this like long lifetime of issues. And then that's when I got my ileostomy um because my colon, like we just all the testing I did, we just knew that it wasn't ever gonna work again. But I also had redundant colon, which means that I had too much colon. So I just got my colon out to like a little over two weeks ago, and I asked them to take a picture of it and like measure it when it came out because like we could see on the scans that it was like I had too much colon, but we didn't know how much. And I had literally double the amount of colon that you're supposed to have. So most colons are like three to four feet long, and mine was measuring over seven feet long.

SPEAKER_02 17:09

What's the theory for that?

SPEAKER_00 17:10

Something that just happens sometimes. I don't know. I just like got lucky, I guess, with all of the things. Yep. It's like that can be seen in like other people too, and like some people can have that and not have issues, and then other people do have constipation. So if you like if someone has just that, sometimes they just do like a bowel resection, like they just take like a section of your bowel to shorten it, so then there's less transit time, and so then your stool gets like less hardened and you don't have as much constipation. But we knew that that wasn't the only factor in my case, so we opted to take the whole colon out and then make my ostomy a permanent thing.

SPEAKER_01 17:47

Okay.

SPEAKER_00 17:48

So that was also really wild.

Self-Advocacy And Identity Balance

SPEAKER_00 17:52

I like looked at the picture and they had like a ruler next to it, and I was like, oh, okay. And then I realized that it wasn't a 12-inch ruler, it was a 15-inch ruler, and I was like, Oh, okay, yeah, and it was only taking up like you know, a section of my bowel. So yeah, my clone was over seven feet long. Um, which I'm like, that's a lot of organ that is not in my body anymore.

SPEAKER_02 18:14

That's a lot, yeah. It takes up a lot of space.

SPEAKER_00 18:17

Where there's where? Yeah. How is it fitting in there? That's so weird. Um, so yeah, I've kind of just been like going through like the past like oh, three to four years, I've just had like so many diagnoses and surgeries because I finally got access to quality healthcare and like people who actually knew what they were doing. And half the time I just got lucky, and half the time I worked really hard to like find a doctor, like my Mel's doctor that did my surgery. I had to work really hard to find somebody who was like qualified to do that surgery to make sure that they weren't gonna like mess it up, you know. And then other times, like my colorectal surgeon who gave me my ostomy, that just was who I got referred to, and she just happened to believe me and know what testing to do and to listen to what I was saying and like trust that this was like the right treatment option for me. So it was half luck and half like working really, really hard to make sure that my body is like being treated the way that it should be.

SPEAKER_02 19:19

You had to be really firm in your self-advocacy from a very early age on.

SPEAKER_00 19:23

Yes. Self-advocacy is like, I want to say, one of my biggest like strengths, which is sad because I had to learn it really hard ways. Um, especially like it's still come like it's just wild to me how often that really does come up. Like, even my last hospital stay, like just for the surgery, there were so many moments of like, are we really having to do this right now? Like, this should not be happening.

SPEAKER_02 19:47

I saw some of what you said online about it, which I want to get into. However, going along with your journey first, getting these new diagnoses and like getting new bits and pieces of information, how do you like mentally handle that?

SPEAKER_00 20:02

I would like to say that I do. I don't think that I handle it very um, maybe not healthily, I don't know. I think I just like compartment compart to minimal compart and minimize it. You know what I mean?

SPEAKER_02 20:18

Yes, exactly.

SPEAKER_00 20:20

Um, so that like it's just like this objective thing that like I have to deal with. And I'm like really proud of myself like after the fact or like when I'm going through it, but like I don't necessarily like allow myself to emotionally invest in this like aspect of it because there's been moments when I have and I get way too emotionally invested, and if it turns out in a way that wasn't the way it was supposed to be in my head, then it's like devastating. So as like a protective mechanism, I kind of just like object objectively put it in this spot, and I'm like, this is something that is on my to-do list that I have to deal with. And then I kind of just go for it. I think like I've tried to talk about it in therapy, and like I've found like chronic illness-specific therapists, but then they start therapeutizing my chronic illness everything,

Medical Gaslighting In Hospital Care

SPEAKER_00 21:19

and I'm just like, I just don't feel like I'm benefiting because I truly haven't allowed myself to like sit in a lot of that, and so when they're trying to like pick apart these like things with my chronic illness, it just like isn't getting like through my head because I haven't even allowed myself to sit there yet.

SPEAKER_02 21:37

Right. So, like putting it away in your little box is also being protective of your mental health, but also your physical health, because if you put too much energy and focus on it, therefore, like physically it could totally flare something as well.

SPEAKER_00 21:50

Oh, totally. And that's why, like, when I'm dealing with a lot of like chronic illness health stuff, a lot of the times there's like other things going on in my life that bother me and like are affecting my mental health way more because I'm just like the like this is just it's been like a constant in my life. Like I've always had something, I've always been sick, it's always been, you know, whatever, whatever. And everything else that comes up in life feels like a newer thing or like uncharted territory, I guess. So that like takes up a lot more brain space. And illness is just something that I'm like, it's always been there, it's always gonna be here. I'm just always working through it. Like, literally, no matter what, there's always something. So that's just like become part of my routine, I guess.

SPEAKER_02 22:34

How do you balance your like medical identity and then like your personal identity? Or have they kind of just like mesh? Like, is it just your identity at this point?

SPEAKER_00 22:42

It kind of is just my identity. I think I unintentionally do sometimes try to separate them in different parts of my life because growing up, a lot of my health stuff was kept hidden from like the rest of my family, or like just like other people in our life. Like it was just something that was talked about with my like parents basically. And it wasn't until like things got like really out of control that we actually had to start talking about it because I was getting like four surgeries in a year, and like that's something that you just like can't keep hiding, I guess, at that point. Um, and then my parents like wanted support, I'm sure, from our other family members. And like, you know, even though I was an adult, like I'm still going through all of this. Um, but I get really uncomfortable talking about my health stuff with my family still, or like with people close to me in my life that aren't also chronically ill because they just like don't understand it to the level that I'm experiencing it. And that's not to say that they aren't supportive, they are. There's just like certain things that they won't ever grasp or like conceptualize in the way.

SPEAKER_02 23:53

Fully understand.

SPEAKER_00 23:54

Yes. And because it's something that has always been a thing and it's always going to be a thing, it's always affecting everything that I do. I don't want to constantly be talking about it to someone who doesn't get it and then sound like a broken record, which like on the flip side of that, if someone loves you, they should be willing to like hear all of that, you know? So it's kind of like a hard balance that I try to figure out. But like sometimes, like I had a friend kind of call me out the other day because I was talking, I was like, oh, this other friend. And they're like, which part of your life are they from? Like, are they from your like chronic illness community life or from your like work life or from and I'm like, I guess I'm gonna do keep a lot of stuff separate, not like intentionally, just like I don't want to bring my like chronic illness stuff into work, or like that friend, I met her through school, and so we like connect on like a love for like science and like education, and she's like the most healthy person ever and is like a collegiate track star athlete. So like she is very supportive, but doesn't understand any of my chronic illness stuff, and so it's just like, well, I'm not gonna mix my chronic illness stuff with like you, because that doesn't really make a whole lot of sense. Like, for sure, you're she's supportive, but you know, it's just like it's kind of different. And then I just like like to keep my family out of a lot of like aspects of my life because I like to have my own personal like stuff going on, so yeah, absolutely.

SPEAKER_02 25:21

And I think like they try to be supportive, and like it comes off as supportive, right? But then it also is like an undertone of like pity in a way, and if there's one thing like we we don't like that, like we stay away from that as much as possible. So I think it makes so much sense what you're saying of like really kind of separating it out. Yeah, obviously it's a part of you, but not having it be like the main focus all the time, all you talk about.

SPEAKER_00 25:44

Yeah.

SPEAKER_02 25:45

Yeah.

SPEAKER_00 25:45

Because I feel like I have had friendships where it was something that was talked about a lot, and that like not I guess that is like indicative that this friendship wasn't like the right friendship for me, but it did end up like affecting it in a negative way. And like anytime I talk about, like I had I talked about how like after I was told that maybe I should get evaluated for autism, I like kind of brought it up to like see like how people would respond. And I was told, Oh, you just think that you have everything. And this is from like a someone that has never dealt with chronic illness or any diagnoses, like basically ever. And I was just like, Okay,

Digital Advocacy And Education

SPEAKER_00 26:21

cool. That was like telling to me that this isn't like a safe space to like talk about this stuff. So I'm just like, and when it's like chronic and not acute, people don't understand it's like all the time. And I've had so many surgeries in the past like two to three years that at this point people are like, oh, Taylor's got it. Like she's had so many, but I'm like, guys, it's still a surgery, it's still a trauma every single time. Like it's very, very hard. But because I've done it however many times that I've known them, and that's like all that they've known about me, especially if it's someone that I just met, like in the same time frame, that's like really difficult because I know that I've like had this whole life where this was like a whole journey, but the only part that they know about me is the past two to three years, I've had X many surgeries, and I've you know gone through them all. I don't know.

SPEAKER_02 27:11

Totally. I want to kind of go into medical gaslighting with as thick of a journey as you have. When was like the first notable time where you experienced the gaslighting?

SPEAKER_00 27:21

Like from a medical professional, probably with that scoliosis doctor, when I was like complaining of so much pain, because like when I wear my brace, it like sent nerve pain throughout my whole body, and I would just like cry in agony. And then when I was dislocating my shoulders, they were just like, Oh, it's just probably like pain from your scoliosis or whatever. But it was actually because I had tethered cord syndrome too. And so when they were trying to correct my curvature, then they were putting more tension on my tethered spinal cord, and your spinal cords connected to every single nerve in your body. So they were like putting more tension on something that was already tight and tense and sending like nerve shocks throughout my whole body. And they were just like, oh, that's normal.

SPEAKER_02 28:05

How long did it take you to mentally like, okay, no, like I firmly believe like this isn't right versus like believing somebody else?

SPEAKER_00 28:16

I think deep down I've kind of like I kind of always know that something isn't right. It's just a matter of like, am I going to like speak up and say something, or am I going to just like go with what they're saying for now? So like I knew that something wasn't right then, but I'm like, well, they did x-rays and they can't find anything. So I guess like I'm gonna go with what they're saying, even though like I knew it wasn't right.

SPEAKER_02 28:41

Right.

SPEAKER_00 28:42

And I feel like that's kind of how it's always been. Not necessarily that like I'm believing what they're saying, but it's just like way too much of a fight to put up with when you're like in that much pain or like dealing with whatever you're dealing with.

SPEAKER_02 28:59

Okay, so recently you just got out of a hospital stay. I saw some content online of you posting about it. I kind of want you to go through like what what the provider said when she went out of the room, kind of give us that rundown of what happened. Because that's an interesting story.

SPEAKER_00 29:14

When they were talking shit about me?

SPEAKER_02 29:15

Yeah.

SPEAKER_00 29:16

Yeah. I didn't hear any of it. It was my husband that heard it. So what happened? It was the day that I was getting discharged, and I had a complication with my kidney. So in my surgery, they had to put stents in my ureters, which is like your kidney to your bladder. And I got there was like an injury to where my ureter meets my kidney on one side, and it caused inflammation, which then caused urine to not be able to flow out of my kidney, and it made it swell, and that hurts really, really bad. Um, and so my like operative pain was like feeling pretty okay, but my kidney pain was really, really unmanaged, and it was like unmanaged to the point where I wasn't sleeping, and then I actually went to a psychosis episode. Um Because of that, where I like didn't recognize my friends, like I had like

Destigmatizing Ostomies And Disability

SPEAKER_00 30:04

people there like helping me, and I like was like, Who are you? Like, I didn't recognize them, I didn't know where it was. Um, so I was like that sleep deprived because of the pain. Dang, and I had just had like my drain pulled and it was like literally squirting fluid, like I was soaking dressings every 10 minutes, and then my kidney was in so much pain. Even when they'd give me my pain medication, I was saying that my pain was still an eight out of 10 because it was that bad. But then they were talking about trying to discharge me. And I was like, guys, my pain is not being managed like at all. And they're like, Well, we can't give you NSAIDs, like anything anti-inflammatory, and we won't give you any IV medication because that's going backwards. And I'm like, Well, we're going backwards because there's been a new complication that has arisen. So if my pain isn't being managed with the oral medication, then we have to do IV medication. And they were just like basically saying, like, no, like we're only giving you this. This is what you'd get here. It's the same thing that you'd get at home. So we're sending you home. And I was just like, all right, fine, whatever. Like, I was just so over to that point. And like, yes, I also want to go home. Like, you know how much I want to be in my own bed and actually trying to get some sleep. My poor husband was sleeping on the recliner in the room, which is comes up with everything, like the shit that they were saying. Um, so it was a like one of the residents, and I had was saying that I thought she's really nice. There was a different resident that had been there the day before who made me cry. And so they sent in a a new a different resident, and she they left the room, and my husband was like, Okay, I'm gonna go pick up your pain medicine from the pharmacy. And so he left like 10 seconds after them. And I was talking to my friend who was in the room with me, and I was like, See, I like her. She was nice, she actually was listening. And as I'm literally saying how much I liked her, my husband texts me and is like, they are literally talking shit and mocking you in the hallway right now. And I was like, What do you mean? And he so the elevators are like here, and their like little office was around this corner right next to the elevators. So he walked out behind them and they went to their little office with the door open and didn't realize that he was sitting at the elevators waiting and could hear everything that they were saying. They were laughing at me, they were mocking me, and they were saying that I was being overdramatic, and then I just didn't want to go home.

SPEAKER_02 32:19

The balls and the audacity.

SPEAKER_00 32:21

Oh, and then and then, so my husband told me all that, and I was just like, okay, wow. And so my friend immediately pulls out a sticky note and starts writing on a sticky note and ended up saying, Next time I recommend you get out of earshot before you talk shit about your patients. We ended up putting it on their door when we left. Um, but he was coming back from the pharmacy and he passed them in the hallway and they stopped him, like literally took the time to stop him and be like, Aren't you so glad that she's not going to be chaining you to that recliner every night anymore?

SPEAKER_02 32:52

To your husband.

SPEAKER_00 32:53

Yes. Who was willingly and volunteering himself to sleep in a recliner in the hospital because they wouldn't give him a cot, even though there's room, because he knows how dangerous it is for patients

New Scientist Role And Big Move

SPEAKER_00 33:07

to be left alone in the hospital under the care of other people.

SPEAKER_02 33:10

How do you not just like absolutely lose it?

SPEAKER_00 33:14

My husband is a saint and very patient and a people pleaser almost to a fault. If I would have been there for that, I would have lost it.

SPEAKER_01 33:22

Okay. Yeah.

SPEAKER_00 33:23

Like I, it took everything in me not to just go knock on their door as we were leaving because it was right next to elevators and just be like, Are you kidding me right now? Like it was, yeah. And it was the residence of all. I'm like, you have not been a doctor long enough to be doing this.

SPEAKER_02 33:40

Like well, to be talking in a space too where it's not private. One, you shouldn't be talking that anyway, but to do it in a sense of like anybody can hear you, like it was a power move for that note to go up, that's for sure.

SPEAKER_00 33:53

It was, and I know they know who it was from, but we didn't sign it. I I just know that they know. My friend, my other friend that was there, I remember she ended up telling me after the fact that she heard them saying something about me too in the hallway. It wasn't as bad, and I don't remember exactly what she said it was that they were saying, but just that they were talking not great about me. Like it wasn't necessarily like neutral, but it wasn't super bad. Um, because they didn't realize that she's coming into my room, but they were standing outside of my room on like rounds or something. Um, I don't even remember what that was because it just wasn't as important as the second one. Um, but yeah, it was just strange. They were just like acting like I was just being overdramatic because I wanted to stay in the hospital. And I'm just like, no, it's because my pain literally isn't controlled. And it wasn't, and the ride home was horrible, and my first night home was horrible. And I was like literally crawling on the floor because I was in so much pain, I couldn't stand up straight to walk. I had my husband and my sister here helping me, and I was still like sobbing and like couldn't get to the bathroom. And I feel like every time you're in the hospital, there's like there's a day or there's a moment when you're like, wait, this is the moment when I can go home. Like, this is when I feel good. And that day came for me like two days after I was actually sent home. I like that moment was when I would have been okay to go home. Instead, I was just like sent home to supper. And they were like, Oh, just watch out for kidney failure. And I'm like, Well, what's the signs of that? And they're like, Oh, like dark urine, you're not peeing as much. And I'm like, Well, that's my use, so I'm not sure. Okay, fine. Like, if we're worried about kidney failure, it's almost like I should be kept for observation. But that's just my opinion as a not doctor.

SPEAKER_02 35:38

Yeah, I mean, and they're they're supposed to believe you. I mean, that's her damn job, and then to feel failed.

SPEAKER_00 35:44

I mean, that's the urologist, the first urologist I talked to, he did believe me, and he was advocating for IV pain medicine. Um, and then I don't know what happened to him, but then I got sent another lady who was so rude, she acted like she wanted to be anywhere but talking to me. Like she would have rather have been, I don't know, stuck in traffic or something. Like she was so rude, um, and just like didn't care about any of what I was saying or any of my pain or anything. And they just kept saying, she just kept saying, like, we're gonna defer to your surgical team, defer to them, even though I was like, this isn't surgical,

Working While Disabled And Support

SPEAKER_00 36:21

this is like a complication from like a part of my surgery that you guys did. So, like, fix it, like help me. And they just were like, We're just we're just deferring to them. And they obviously were like, Well, we don't know anything about kidneys, like maybe it's painful. I don't know. Here, take just your oral stuff that we would give you. It was just like very poor management.

SPEAKER_02 36:42

To put into perspective, how often do these situations happen in your experience?

SPEAKER_00 36:48

Than like medical gaslighting and like yeah, yes, very often, yeah, very often, like just in that hospital stay alone. There's like so many situations that shouldn't have happened. And I had someone with me 24-7, like a person, like someone close to me that wasn't just like, oh, a staff member. I had like someone who knew me and loves me with me 24-7 on purpose, and these things still happened even in front of them.

SPEAKER_02 37:17

That shit is not feasible.

SPEAKER_00 37:19

It's not feasible for you to have someone with you 24-7. I was lucky that I had people who could take the time to be with me. Most people, majority of people, do not have that. And it's terrifying what happens when there's no one there to advocate or like support you in the hospital.

SPEAKER_02 37:35

Yeah, I don't even. That's very lucky that you have the support for sure. Okay, so let's get into advocacy. You share your journey online, you post content, you're a disability advocate. What kind of led you into that? I mean, we can probably assume it was like your diagnosis and your journey, but like what was like the turning point of like, no, I really want to share this.

SPEAKER_00 37:55

It started kind of as like a journal almost for me to share. I'm not a journal girl. I really, really want to be so badly, but I'm not. And I thought I could trick myself into like journaling if I was like sharing photos and stuff with it. And it wasn't like it wasn't supposed to be for anybody, like it was just supposed to be for me. Obviously, I knew like people would find it, and I just knew like I could connect or like people could have similar experiences and like feel like kind of what I'm going through. Um, but I didn't realize how many people would relate to what I was sharing. And at that point, I was sharing like a lot of details because it was it was supposed to be for me. Like it was supposed to be for me to look back and remember like the exact dates of things that happened and all of that stuff. And then I realized how many people actually related. And I was like, okay, maybe this should be turned into like I wasn't, I wasn't really tricking myself with the whole journaling thing. Um, and so I was having a really hard time like actually keeping up with it and like keeping it relevant because I'm just not a journal person. So I was like, maybe if I like switch it a little bit into still sharing things that affect me, but in a more like educational way and like way that is relatable to like a broader audience rather than like this specific thing that happened to me, you know, that like some people can relate to, but there's a lot of details that are like very specific to me. And so then I started sharing just like general information about things that I have and that affect me. And I really love science and I really love research, and I really love like the like very matter-of-fact pieces of everything in like the chronic illness and medical world, like the diagnosis, like for mouse, for example, like that there's like these certain steps, and then there's like the celiac plexus block, and then there's the surgery. Like, I just liked being able to share like here's here's the diagnosis process that I went through that is like backed up by kind of like the criteria for getting diagnosed. And so here are like actionable things that other people can do, like if they are experiencing the same things that I did, type of thing. And that is kind of, I guess, what started it. And just realizing how much knowledge I've picked up along the way that isn't common within the medical system and like with doctors that I can share to maybe give people, you know, plant seeds of like thoughts of like maybe I should go down this route too. Because a lot of the times that's how people end up figuring things out, and that's how I learned about visceroptosis and I saw it on my x-ray when I was with that radiologist because someone else had posted about it first, and I knew what it looked like. So then I saw it on my own scan, you know, and I was able to like advocate for myself in that sense. So, like I probably wouldn't have, even though I had a professional tell me like you should go seek an autism diagnosis, I probably wouldn't have unless I had seen other people talking about it online first and like talking about the process and like how it actually doesn't have to be that scary.

Closing Gratitude And CTAs

SPEAKER_00 41:06

Um so I think just like if sharing what I'm going through, but also in a way, not just like putting out information of like, here's what happened to me, but like here's what happened to me, and also here's the science behind this thing, and also here are symptoms to look out for that maybe I'm not even experiencing, but just like can go with this thing. And then here's you know what the consensus is for the diagnostic criteria or testing to do, um, and then the treatments, and just like there's so many different ways that you can like talk about these things, um, and especially like even when you get to the point, because I ended up getting to a point where I'm like, okay, so I've had like all the surgeries and I've done so many treatments, and I got to a point for a little bit where I was just like managing, and that felt very new to me because I was in this process of like figuring things out and just like doing all this stuff. And so then exploring, okay, here's what I do to manage my symptoms every day, my pain every day, like here's things that help me, and then also learning that from other people and kind of compiling this like basically like toolbox of stuff to share with other people.

SPEAKER_02 42:15

Yeah, digital advocacy is definitely a very powerful tool for the chronically ill community. And like you said, it helps people kind of figure out their own avenue as to what they need to go down, different ideas, questions to ask. I mean, I think we all have felt very seen by other people's content and what they post in their journeys for sure. Do you feel kind of any pressure advocating while still healing, or does it kind of give you an overall sense of purpose?

SPEAKER_00 42:46

Um both. I think that I put a lot of pressure on myself to constantly be putting quality stuff out because I do want to like be constantly helping people and like that. I just am like constantly wanting to like reach more people because I get so many comments, like I will reshare the same thing three times, and every single time I get so many more people being like, I've never heard this before, I've never seen this. And I'm just like, okay, I could literally repost the same thing so many times, and it could still reach new people every single time. And I just like am constantly wanting to like reach more people and like get the information to who it's supposed to be going to, um, and at the same time be putting out quality content that isn't just like bogging down my feed or other people's feeds. So I do try to be like really mindful and intentional of like, okay, when this goes out, like how helpful will this actually be to people? Like, will this actually lead people down like a path of answers or feeling seen or being validated? Um, and that's kind of like what I thought about a lot when I was transitioning from like sharing my own like personal just like details to like more educational content. Um, because ultimately at the end, like I just want to be sharing things that can take people further in their own journey. And so then that's when I started getting into like sharing resources, like I just like started typing up like documents of resources. And recently I've started working with Guava. I don't know if you know Guava. Um, they're like a chronic illness app that you like can literally track anything and everything chronic illness related. Um, but they were like, you share a lot of like personal like documents I've written up. Like, do you want to turn them into articles and keep them like in a spot in our on our page and stuff?

SPEAKER_02 44:40

Hell yeah.

SPEAKER_00 44:41

I've written like four articles with them. Um, and just like like I have a template for how to appeal an insurance denial that I've used personally like three different times. I'm like, well, this helped me, like maybe it would help somebody else. Or just like here is how I learned how to live with my ostomy for the first few months. Like, here's all the tips and things that people don't tell you. Like, just like stuff like that. I want so badly, if I had all the time in the world, to create like the biggest like chronic illness guide from like the second that you feel a symptom to like being a pro, like a veteran at it. Like, I want to create just like the biggest guide with like all of the things that would take so long. And there's going to be never-ending resources and stuff and information constantly evolving. But like that would just be like amazing if I could literally spend all of my time doing that because I just like want to get everything out to everybody all the time.

SPEAKER_02 45:42

Using your diagnosis as purpose, and I have chills for that. I and there's still time. There's still time to do that. You can. Okay, so given the new administration and the disabled and the chronically ill being a very vulnerable community, what are like some of the biggest things we need to look out for as far as like advocating, whether you're chronically ill or just a normal person that doesn't struggle with disability?

SPEAKER_00 46:05

There's always going to be minorities, disabilities included that are, I mean, they're minorities, like they're already targeted. Um, but just being like further stigmatized and further harmed, basically, like I just don't understand why disabilities and like people with chronic illness are like targeted and harmed, and like things are happening in the way that they are because anyone can be disabled at any time, and most people will be disabled at one point in their life. So it's like, why are we like biting this so hard? Um, I think a lot of it is just because it's like scary for a lot of people, yeah. Um and so again, sharing like I want to like share things that are true and honest, and a lot of that is that I am a like happy person and I have joy as someone with a disability, but there are also hard times, and like I do want to share those. I'm not necessarily trying to like you know make it seem like it's all happy and like romanticize it, but I'm also not like, oh my gosh, my life is miserable because it's not, you know, there's the balance, yes. Um, so just like taking the like mystery and like the scariness out of it, I guess. And a lot of that, like especially I've learned recently around my osomy bag. So many people are scared and intimidated and just confused and uneducated about awesome bags, and just sharing like random stuff that to me is just like part of my everyday thing, but people like don't see. I forget that, and then I share it, and everybody's like, oh my gosh, I didn't really like I shared a video of just like my stoma without a bag on, and it's just like a little red, like little looking button, and people are like, Oh my gosh, I didn't know that's what it looked like. I thought it was like this big, gross, giant, and I'm just like, Oh my gosh, like what do you think is going on? Like, it's literally not that big of a deal, it's just like a thing that's there, you know?

SPEAKER_02 48:06

And it's helpful for you, like it's to benefit you, it's not a negative thing.

SPEAKER_00 48:11

So many people will say, like, oh my gosh, I would just die if I had to have an ostomy, or I can't, I wouldn't be able to live, or I would, you know, so like they just think it would be the end of the world, or people assume that everybody wants it reversed, that everybody wants it to go away, that everybody doesn't want to live, especially people in the medical field. I had so many people try to tell me that it's going to be the worst thing ever, and I was way too young to be getting this. And oh my gosh, like even when I knew that it was permanent, I would be asked by my own doctors, oh, so when are you getting it reversed? I'm like, I'm not, it's permanent.

SPEAKER_02 48:45

Well, they already had that like programmed into their head at that point, and then projecting it onto the patient, which is fucked up.

SPEAKER_00 48:51

Yes, especially if you're going like if you don't have your ostomy yet, and you're being told this, like that it's gonna be horrible and that it's so gross, and that like you're gonna want to reverse and all this stuff, like you're going into it scared basically, because everybody's scaring you.

SPEAKER_02 49:06

I'm gagged. I guess I'm not surprised, like that doesn't really surprise me in the least that they're doing that, but yeah, no, yeah.

SPEAKER_00 49:16

So it's just like taking the mystery out of it, and like I know that there's a lot of people that have different disabilities or deal with certain certain things where they would prefer to keep it private, and like everybody that's why everybody gets to make their own decision. For me, I found it really beneficial to share that stuff because even though I get a lot of really horrible like comments from people that just like don't really care to understand, they just like want to comment something mean to be mean. The amount of comments that I get of people saying, like, thank you for sharing this. This made me feel so seen. I can't believe I'm seeing somebody else with something that I have, I never would have felt confident enough or comfortable enough to share, like post this, like that is truly what keeps like me posting and like doing what I'm doing. Like that is louder than all of the the bad comments, and even the bad comments. I'm just like, well, I'm gonna keep exposing you to it then. Like, obviously, you'll have more to learn if you're gonna keep saying that, you know.

SPEAKER_02 50:17

So it's just on follow, say I don't like this. It it doesn't have to be on your page, but also the fact that like somebody takes the time to comment something negative says a lot more about them.

SPEAKER_00 50:28

Well, and the fact that they're interacting with it, I'm just like it's gonna pop up again. Yeah, if you're interacting with it, then totally, you know, which I'm like fine, I'll I'll keep showing up on your page. Like, I don't care. Comment all the mean things that you want. I'm gonna keep showing up. Um, so it's just like exposing people to things that are not talked about and that are stigmatized. Like, fine, I'll be I'll I'll do that. Like, it doesn't bother me that much. It doesn't like every once in a while there will be like a comment or like something said that will kind of get to me. But most of the time I'm just like these people don't even understand. Like the what I know that I've been through and like what I've had to do to get here, it completely outweighs like a random comment that I'll get from a stranger that's behind like a burner account, you know?

SPEAKER_02 51:19

Totally getting loud, making noise, being part of the change. I mean, that's it's powerful.

SPEAKER_00 51:25

Yes, and that's kind of yeah, that's my goal. And I want to like encourage others to do the same. Like if that is something that is like speaking to you and something that you feel like told to do, then I want to be able to encourage people to do the same because it is scary and like the internet can be a really vulnerable and scary place. And if you aren't used to kind of just like filtering out the bad stuff, then that can really take you down and it can be really, really difficult.

SPEAKER_02 51:54

A lot of the times the positive outrates the negative, though, like you said.

SPEAKER_00 51:57

So I have like a album on my phone of just like nice comments and messages that I've got that I can like go back and read if I'm like feeling like, why am I doing this? Like, what is the point? Like, I can go back and like read messages of people being like, this has changed my life, or seeing this like completely changed the directory of my like healthcare, and it's just like so nice to read because people forget that like sometimes I need a little encouragement too. Like, I'm still a person you are also human. Yes, I'm like dealing with all of my own stuff separate from everything that I'm doing online, and I do want to like talk about it and share a lot of it, but I need time to like process what I'm going through too. Um, and like sometimes I still do get scared to like share things online because I'm scared of what the internet is gonna say, but I try to remember that if I am feeling like a certain way about something, then I know someone else out there is too.

SPEAKER_02 52:56

And if talking about it is going to like bring awareness to it and like make someone else feel validated, then like I'll take absolutely what is something you would tell younger you about your healing journey and about all your diagnosis compared to where you are now?

SPEAKER_00 53:14

It's gonna be really, really, really hard. But that you're going to get through it. And that I should just like learn to trust kind of what I'm feeling. Like, I feel like I used to say, like, just trust your gut and like trust your body. And a lot of disabled and chronically ill people feel like they can't trust their body because it's like betrayed them so much, and like, yes, your body does betray you, but also like you have a sense of what is right or wrong going on in your body. Like, trust that. Don't necessarily trust, you know, like that your body can like fail you in these certain ways. Like, that's gonna happen and that's gonna like continue to happen, but like you know when that's happening. And if someone's trying to tell you that that's not happening, like you know deep down the truth of what's going on because you're the only person that can feel it. So that is like what I mean by like trust your body and like trust what you're feeling and like what's going on inside of you.

SPEAKER_02 54:09

That was one of my hardest things, too, is to trust my intuition in my body, my gut, regardless of what everyone else was saying, because I'm somebody who is so easy to take somebody else's opinion over mine, and yeah, that was definitely one of my biggest hurdles. And I think that's a majority of us feel that way. So totally.

SPEAKER_00 54:28

Well, and even like I'm sure you still struggle with that. Like, it's not like once you like learn to trust yourself, it's not just like, oh, I just like trust myself so easily. No, like it's something you continuously have to remember to do, it's not just something that like comes intuitively, which is hard.

SPEAKER_02 54:44

It's always a work in progress. Thank you for taking the time to share your story here and to connect. I I love your content, I've learned so much from you as well. So that just goes to show that like it really does make a difference, and the more voices the better. And um, where can we find you?

SPEAKER_00 55:02

Uh, my username is Distabled D-I-S-T-A-A-Y-B-L-E-D on everything. Instagram, TikTok, YouTube, Substack are my like main places trying to trying to expand, trying to do long form, short form, written video, static post, like all of it. Like, what is the best way to get out the information that I want to get out? And if it's a 30-minute YouTube video, which is what I did leading up to my surgery, like some people are gonna find value in that. And if it's like a static post just putting out educational information, some people will find value in that too. So just trying to meet people where they're at.

SPEAKER_02 55:44

Like I said, you're a powerful voice, and it's gonna go farther than it's already gone. So continue the good work and the good fight. Thank you for being a voice in this community, and I'm excited to keep watching your journey.

SPEAKER_00 55:56

Thank you so much for having me. This was great. I always love yapping.

SPEAKER_02 56:00

I know. Um, happy healing, continue to get better.

SPEAKER_00 56:05

Yes, I feel like I'm like able to be upright a little bit more and like walk a little bit more. I had to go to Costco yesterday, not even to like shop. We just had to like return something. And I was standing at the food court just like waiting, and I was just like, why am I in so much pain? So, like it definitely comes and goes. I feel like it's worse in the evening after I've been like doing stuff. Um, something that I wasn't I think I've been struggling with like unintentional weight loss after surgery, and my body is just like depleted of nutrition, I think. Um, which like I was warned about, but I kind of I guess was like that's not gonna happen to me, but it definitely happened to me. Burn off. So I am trying to like get my appetite back and get like my nutrition back. Um, and I think that is like adding to a lot of the fatigue on top of that. I'm just like also going through so much stress. Um low key, where do you live?

SPEAKER_02 56:59

Nashville.

SPEAKER_00 57:00

Okay. Um, I'm in Oregon right now, but I haven't announced it yet because I've been too scared to do you know the Norris Lab?

SPEAKER_02 57:08

Yeah, yeah.

SPEAKER_00 57:09

I am moving to South Carolina because I just got a job as a scientist in the Norris Lab.

SPEAKER_02 57:14

Shut the fuck up.

SPEAKER_00 57:16

Yeah, congratulations. In like two weeks, Taylor.

SPEAKER_02 57:21

That's huge.

SPEAKER_00 57:22

I know. Oh my god. I've been too scared to talk about it. Um, but yeah, so that's I've been like that's stressful. I found out right before my surgery that like I got offered the job, and then I like got my official offer when I was in the hospital. So I I was like having to like sign paperwork and like officially accept the job and start onboarding when I was in the hospital um because they want me there so soon. So yeah, I've been like dealing with this. It's so stressful to move across the country. I didn't realize.

SPEAKER_02 57:51

Yeah, no, it is.

SPEAKER_00 57:53

Um, so we've been just like trying to and like transferring all of my doctors and stuff is going to be such a bitch. Um so yeah, I've been dealing with that on top of recovery.

SPEAKER_02 58:07

Yeah, pile on the stress, that's for sure. But it's gonna be great, it's all gonna work out. You'll you'll get through it.

SPEAKER_00 58:13

Thanks. I'm so excited. I'm just hoping like I'm glad that I know like Courtney. If you follow like does Court does science, you follow her.

SPEAKER_02 58:21

I think so. Yes.

SPEAKER_00 58:22

She is like one of the main girls in the lab. Um, but so I like know people in the lab, mostly like through social media, but I went there in January to like intern for a week and I met them all in person. So I'm like glad that I'm going knowing people, but I'm also like leaving my like friends and community here, which is hard and sad. And my family is not in Oregon, but they're in like surrounding states, so it was like easier to go home, and now it's gonna be like a lot harder. I don't have any family on the East Coast, so totally different side of the country.

SPEAKER_02 58:53

But the good thing is is that you'll bid build your community. You have your husband.

SPEAKER_00 58:58

Yes. Oh, I wouldn't be able to do any of this stuff. Yeah, that's that's for sure. He works remotely right now through he's like a software developer, and so he works like with a lab doing coding and whatever. And we just got the return to office call. Um, and his lab is in Idaho. And so we're we filed an exemption based off of my medical need because I grew up in Idaho and had horrible like healthcare there. So that was kind of like the basis of our like exemption. Um, and we still haven't heard whether we get the exemption or not. And if we don't, then he loses his job in January. And he's had that job since 2020.

SPEAKER_01 59:36

Oh god.

SPEAKER_00 59:37

So and he's like our main like source of income, right? Um, and the only reason that I've been like okay because he is at home and like can like help me if I need it. So that has also been super extremely stressful, and we just like finally had to take his job out of the deciding factors for me accepting my job, because it's just like if you lose your job you're gonna have to get a new job regardless whether it's here or in South Carolina so we're basically moving across country not knowing if he's gonna have a job in a year and if we're gonna have like our main source of income come January.

SPEAKER_02 1:00:15

It'll fall into place. And maybe this job for you will just absolutely pop off and it you'll be okay anyway.

SPEAKER_00 1:00:21

We'll see. I'm hoping.

SPEAKER_02 1:00:22

Yeah it all works out.

SPEAKER_00 1:00:24

I'm just trying to remember how I felt when I was there in January and I like that's the whole reason why I applied to the job and I like literally called my husband when I was there crying being like I think we need to move here. I'm just trying to remember that that's how I felt and like I'm going to feel the same way once I get there. I'm just like scared I'm gonna show up and hate it for some reason even though I know that's not gonna happen.

SPEAKER_02 1:00:42

But you have a poll there. So yeah chances are you're meant to be there. Hopefully how does your body do with working?

SPEAKER_00 1:00:50

Well I've never had a full-time job before so I think this is the only like setting where I could have a full-time job because the lab is so accessible and like almost everybody that works in the lab has EDS. So they're accommodating very accommodating like the lab is set up like so much accessibility and I have really good benefits in terms of like sick and leave time. Like I guess better I've never had a full-time job before but I've told other people what my like days off are and they're like that's really good. So I guess that's good. But also they're really accommodating with like if you have appointments or just like need to work from home or like make up your hours after work hours like in the lab that that is also really um like accepted and they're really accommodating in that way. So I'm just really hoping that with all of that I can keep a full-time job. But it's definitely something that I've been stressing about because I worked like a lot of part-time jobs at the same time but a lot of them I was able to like rearrange myself you know and like do from like the comfort of like my bed or like whatever which it will still be like somewhat of an option if I absolutely need it.

SPEAKER_01 1:02:03

Yeah.

SPEAKER_00 1:02:03

This is the first time since 2020 that I haven't had like my next surgery like in mind of like okay so after I heal from this one I need to be preparing for like the next one.

SPEAKER_02 1:02:12

Now you're preparing for a full ass move.

SPEAKER_00 1:02:15

Yes. But I'm hoping that I'm not gonna need another surgery for a while after this one and this move.

SPEAKER_02 1:02:22

Because we're all crossing those fingers.

SPEAKER_00 1:02:25

Yes.

SPEAKER_02 1:02:26

So I'm excited also very very scared yeah so many things can exist at the same time fear excitement stress nervousness like all of it and so lean into it. It's gonna be great. I'm really excited for you.

SPEAKER_00 1:02:41

I am also excited so anyways that's that's been me behind the scenes I've been doing all this surgery stuff but I've also had a shit ton of other stuff.

SPEAKER_02 1:02:50

You've been balancing a lot behind there too.

SPEAKER_00 1:02:52

Yes yes you're strong as fuck thanks Queen don't forget it thanks well thanks for talking and having me and thank you for being here this has been great and a good like kind of like ease back into doing everything. I don't know what my content's gonna look like once I'm like working full time. I obviously want to like keep up with what I'm doing but right now I spend a uh like actually a lot of time doing social media and content stuff and I probably won't have as much time.

SPEAKER_02 1:03:21

So you'll figure out how to balance it. Yeah the sweet spot and talk about lab stuff too that'll be fun like working that in yeah because that's something that yeah we need more information on that too. Yeah for sure whatever you can talk about.

SPEAKER_00 1:03:37

There's a lot that I won't be able to talk about. Yeah a lot of it is so cool. I can talk about after the papers come out and stuff but yeah it'll be fun.

SPEAKER_02 1:03:46

Thanks for listening to another episode of Sick I Swear as always rate follow sick I swear podcast as well as make sure you're hitting that subscribe button so you get notified when the next episode is I know it's kind of been inconsistent right now um but I am I swear trying to get it on a better schedule. Thanks again for tuning in. Make sure you go follow Distabled uh her journey is really fun to watch and she also has a really cool perspective now working at the Norris lab. So thank you guys and we'll catch you next time.