We're All Insane - Medical Malpractice Killed My Mother

Episode Date: April 1, 2024

In this emotional video, we hear the heart-wrenching story of Tia, who tragically lost her mother to medical malpractice due to Sepsis after having a heart attack. Tia opens up about the profound impact of her loss and the challenges she faces in coping with the aftermath as well as discussing her experience with a genetic disorder, ctla4 haploinsufficiencyshe. Tia's Links: https://youtube.com/@tiamarlene505?si=gAeKO28AT170qFhx If you have a unique story you'd like to share on the podcast, please fill out this form: https://forms.gle/ZiHgdoK4PLRAddiB9 or send an email to [e-mail] Learn more about your ad choices. Visit megaphone.fm/adchoices Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me Devorah. I just dropped an all new bonus episode inside my new subscription channel, We're All Insane Plus. This week's bonus episode is called My Brain was slipping into my spine. Listen now by subscribing to We're All Insane Plus inside your Spotify or Apple Podcasts app or go to we're all insane.com. Hi, my name is Tia and I lost my mom to malpractice. So I want to start by just giving some education on like malpractice some medical terms because not everybody knows a lot of the big words that I'm about to say. So to start, malpractice, the definition is improper, injurious, or neglect, or negligent, excuse me, professional activity or treatment, especially by a medical practitioner, lawyer, or public official. And when I was doing research on it to kind of like really understand

what malpractice was, I was honestly shy. docked to found out that malpractice is the third leasing cause of death in America. Wow. That's, I would not have guessed that. I wouldn't either. And when I found that out, I was like, okay, that's a big problem. Right. So the second thing is me and my family have a genetic disorder called CTLA4 haplow insufficiency.

And what that is, so your immune system is made up of like T-cells and B-cells. And what your T cells do is they usually fight off illnesses. So they usually get active like when you're sick or you have the flu to kind of keep you safe and fight off any infection. But within your T cells, you have a gene called C-TLA4 that tells your T cells what to do. And like what to attack and when to attack and when to fall back and things like that. I don't have that gene. So my T-cells are just going absolutely crazy. and constantly attacking my body in different places.

And that's something that's genetic? Okay. So that's genetic. And so CTLA4, excuse me, shows differently in everybody. So like for my sister, it shows very strong as like arthritis. She's had arthritis since she was like 10 months old. For me, it's like a lot of like I have GI issues, which is like tummy issues. I have arthritis.

I have alopecia. I have lung issues and sinus issues. For my mom, it showed as like diabetes kind of when she was young, but also it showed up as like lung issues for her, stomach issues, arthritis. It shows up differently in everybody. And so when we first got diagnosed, we were part of this research study with our doctor. And what I found interesting, and that kind of like stuck with me to this day, obviously, is one of the research families was a set of twins. And one of the twins had the genetic disorder and one of them didn't, which I thought was crazy. Yeah.

Because you think if they were related, they would both have it. But that's not how genetics work, apparently. And then, so C-Tilly 4 was only discovered in 2014. So even to this day, it's really, really new. Yeah. Like I still get doctors when they're like, oh, do you have any medical history? I'm like, oh, yeah. And I tell them I have C-TLew.

TLA4 haplo insufficiency and they're like, what is that? Because it's still very new. And there's a lot of diseases out there that not everybody is aware of. So how CTLA4 is treated is I get this medication called Arensia. So Arendia is, technically they think of it as like an experimental medication. Oops. because it's not typically used in the way that I am getting it for. It's typically for like arthritis patients is usually what it's for.

But how Arensia is made is it comes from the plasma in your blood. And in that plasma, it has that gene in it, that CTLA4 gene that I'm missing. So I would get infusions once a month that have that gene and it's kind of acting as like a replacement. for that month, if that makes sense. So there's that. But also, so my mom, my sister, and I, we're all on Arendtia because we all have the same genetic disorder. For me and my mom, however, because of how our T cells are attacking our body, we also

don't have any B cells. So your immune system is made up of T cells and B cells. So me and my mom didn't have any, like they didn't mature. And so what we had to counteract that was IVIG, which is a type of infusion that gives you like an immune system for the month is kind of like the best way to explain it. It's very complex, but it basically gives you an immune system. It's amazing that they can do stuff like that. Right. If I did not live in the current century, I would be S-O-O.

because yeah right how medicine has improved just within the last year even is amazing um so then another big word is sepsis and what sepsis is it's a complication to an infection where toxins get released into the body excuse me into the blood system causing inflammation on the body that can cause damage to the vital organs very very deadly and it acts very quickly and it occurs most often in people with chronic lung diseases or weakened immune systems one and third of people who have had sepsis usually have had a doctor's appointment within the next like couple days or a week prior so it acts very quickly and it's very scary nowadays sepsis is not very common like you if you're going to get

sepsis you most likely are going to get it from a doctor's appointment um or a doctor or a doctor or or surgery or something like that. Like it's not very common versus like in olden days. Like it was a lot more common because like they were experimenting as we were learning about medicine and stuff like that. And they just weren't as clean with how they did it because we didn't know at that time. So for sepsis to be a thing now, I think it's scary for it. And it's also in my opinion, it can be preventable for the most part.

obviously there are cases where it's not. So the, okay, going into it, um, my mom was a very strong, adventurous, creative, funny, and intelligent person. She was just honestly amazing. Like, I don't have enough adjectives to describe her. And one of my most favorite memories of her is when I was like eight, um, I went down the stairs at our family home and I just woke up. I'm like groggy. And I go down the stairs and I land on the landing and I look to my left. And I see this just man just in my house and he's got like a big old belly and like that like

2000s like scraggly ponytail ponytail and like the really crappy 2000s mustache. And they look at me and like a really high pitch feminine voice. They're like, bye, sweetie. have a good day. And I was just very confused. I was like, why is this man in my house? And I was like, okay, well, go about my day. Turns out my mom's work, she worked as a medical assistant at a gynecology office for Halloween. They were dressing up as pregnant people and pregnancy-related things. And she decided to dress up as a pregnant man for Halloween. And she came home, scared like all of her kids because this man's just entering our house and we're like, oh my God. And she's like, I've been

scaring people all day. And I was like, I wonder why. Right. Oh my God. That is so funny. Yeah. I think that's just very telling of who she is. She was a very light, positive person, very funny, very creative. And I just don't have enough adjectives to describe her. but my mom was what the doctors like to call a complicated case and I even get this myself whenever I see a new doctor they're like oh you're very complicated or you're complex and I'm like yep I'm lots of fun I'm a very fun patient and she was complicated mainly because she had a lot of symptoms without a lot of reasoning to it because she's been sick for all of my life, and I'm sure most of hers as well.

And she had diabetes when she was like 10 is when she got diagnosed with diabetes, but I'm pretty sure that she still had like issues ever since. And they would always treat the cause, but they wouldn't, or excuse me, the symptoms, but they wouldn't treat like the actual cause of anything. And they were like, well, we see that you have these symptoms, but we don't know why. So they would be like, well, you're just complicated. And that's kind of what they shoved it under the rug as. But she was sick pretty much my entire life in and out of the hospital.

And I became very comfortable in hospitals. Like as a kid, they used to be like fun for me as like messed up as that sounds. And that's because everybody in my family really. supported me in it and they really made it a very less traumatizing experience when I was a kid. Like we got to have takeout. The nurses were really great to me. Very just really great, just very sweet. And whatever I needed, they were there. And I would get to like sleep in the hospital bed with my mom, which is not something I got to do at home, obviously. But as a kid, you want to. You want to sleep with your parent. you want that comfort. So I got to do that then. And so it would be like a fun, exciting thing that like,

oh, I get to sleep with mom when we do this. And that's something that I want to do. And my family made it a very positive thing. And my mom made it a very positive thing as well. Like she would always be laughing, cracking jokes, like actively in a hospital bed facing something very serious. But she's being just an absolute light about it, very positive. And so a big reason why it was not as traumatizing was because of her. Right. And because she didn't really allow it to be as scary. And I think she did that one to protect us children. I talked to one of her friends before coming on to the podcast. and it was very interesting to hear his side from her. And like, because obviously, like, you're going to go to your friends with, like, your actual fears.

And quite often she was very scared. And, but she never showed that to, like, us kids. She was always like, I'm going to be fine. Like, don't worry about me. And so, like, for her to do, be so positive to protect us, but also to keep her head. above water because like it's no secret that like if you stay in a negative place in a situation like that it is going to be harder to get out of it and and I remember sometimes like people would be like well why are you joking about this like this is serious like this is not something to joke about

and I remember she would always say well this is how I get through it this is the only way I know how to get through this is by making jokes by laughing being positive and trying to to make it as light of a situation as I can. And I think that I very much take that on where I will crack or crack jokes or laugh or try to make a very negative situation positive just so that I don't drown in like the heaviness of the situation just so I can get through it. And then once I'm through it, I'll fall apart later. And that was like one of her like big quotes is just get through it, fall apart later.

Like just get through it, do what you got to do, and you can fall apart, scream, cry, whatever you have to do after. But get through it right now. And I very much have that same sentiment. And when I was little, I used to, like, obviously when you're a kid, you get sick a lot. You're around other kids. Your immune system is still kind of developing. So I would bring stuff home a lot and my mom would catch it. and then she would have a hard time, like, kicking it, like kicking the rest of the sickness.

And I used to cry when I was little because I thought that I was going to bring something home to my mom, and I was going to be the reason that she died because she got something that she couldn't get rid of. And I remember crying about that one day in our living room, and my brothers had to come up to me and be like, no, like, it's not your fault, Tia. Like, it's fine. like it's nothing to do with you you're just a kid and but I remember that really stuck with me and that was really hard that's a big thought for a child to have I feel like to it it places a lot

of responsibility on yourself that you don't really have that control over right and because I'm a kid yeah but um so I was planned so my mom and my dad got together and they wanted to have me but my you, my mom has diabetes and this would be her second child. And having a kid, also she was like in her like 30s, early 30s when she had me. So it was a little bit more dangerous for her to have a kid, but she wanted me. I was planned and I was born. And after I was born like right after. Like I want to say like I was like two months, three months. I wasn't. very big at all. She got lung cancer and she didn't want to lose her hair. So she took an experimental medication to fight her cancer. And they were like, hey, we know that you don't want to lose your

hair because chemo is really, really hard. It's really hard on your body and it has very long, long, lasting effects as well. So they were like, well, you can be part of this research study and you can try this experimental drug, but we don't know the side effects, and it may not work. But she did it anyways. And she took that drug for many years. And I remember, because I remember everything in like houses. I'm like, where were we at this time? Right. From like me being like a little tiny, like two year, two month old baby to like I want to say I was like almost four or five when she like stopped her last dose of it. Um, but so she was on it for a while, but she beat cancer. Wow, that's amazing. And so she won that battle. And do you think that was because of the medicine?

Did they think that that helped a lot? I think it was a mix of the medicine, but also just who she is as a person. She's had a lot of near-death experiences and she's literally looked up. in the face and walked away multiple times. I do think like you said too mindset plays a huge role. It really, really does. And so she beat cancer and then she still started having like lung problems. Like she started coughing, you know, wheezing regular lung problems. And the doctors didn't know what to tell her. They were like, well, you definitely don't have cancer. So we're not entirely sure why you're having these issues. And she used to watch this show called House that she absolutely loved. I hated it. It scared me. It was very intense as a kid, but I'm not sure if you've seen it,

but House is about this like doctor who's just, he's just kind of mean. Nobody really likes him, but they deal with him because he's really smart. And he's really good at solving the complex cases and my mom really took a liking to it as a kid I didn't understand why now I'm like okay because you relate to it I understand that but I guess house really inspired her to do her own research to figure out what was going on with her lungs because the doctors didn't have any idea and she had some medical background so she knew a little bit of like what she was talking about so she did her own research and she found out that she had something called boop which is B OOP which is a type of lung disease and so she came to her doctors and she was like hey this is the research that I've done

here are my symptoms I think I have this can we test me for this and she got diagnosed with boop she was right wow and I just think that's amazing yeah I mean I feel like too unfortunately sometimes I I mean I've had this discussion with a couple other of my guests on the show, doctors don't always know. No. And it's interesting that doing your own research and double checking can make a big difference and you can sometimes self-diagnose. Not that, you know, it's very easy to go online and self-diagnose for things you don't have.

Oh my God, I have cancer. Yeah. No, you don't. Right. But I do think that sometimes when multiple doctors just don't know and they can't figure it out, sometimes we do have to take it into our own hands and do that research. And even if it isn't that, I think that it is so important to take that initiative and be like, okay, well, like, here's what I looked up.

Could it be this? Or like, can you test just to like knock things out? Because I feel like sometimes unless you're constantly like pushing for the doctors to give you an answer, sometimes it's just like withers away. Well, doctors are people too. Yeah. There's no way for anybody to know all of the things, especially since we are learning new things every day. And they have so many other patients too.

Exactly. Yeah. It's not possible. And I think there's a difference between like being going on like I forgot what it's called. What is it called where you just Google your symptoms. Hypochondriac? Yeah. Like being like a hypercondract and be like, oh, this is what I have because I did one quick Google search.

Thinking you have everything under the sun. Right. Versus like being like, hey, I have these constant symptoms and nobody can figure it out. I've looked on several medical websites and I've talked to some friends with similar symptoms. I think it might be this. Can we get tested for it? There's a difference between being like, this is what I have and trying to work with your doctor to try to figure out what's going on with you. Exactly. I agree. So like I said, my mom was in and out of the hospital a lot during my life. A lot of them I can't remember because I was too little. But whenever she was out of the hospital,

I do remember that my grandma would come up from Pueblo, which is like three. three hours away from where we lived, to come stay with us and take care of us and things like that. And I think that's also what made it a good experience for me because I love my grandma and I love spending time with her. And as a kid, I'm like, oh, yay, grandma gets to visit, not at all understanding the heaviness of the situation. And there was this one time and I think I want to say I was like 11 or 12. Like this is when I first started like remembering what was going on or like having a realization of like what was happening around around me.

And so we took a road trip back to Ohio, which is where my mom is from. And we like visited my great grandma out there and it was lots of fun. But on the way back, she got a staff infection in her thigh. And so she had to do surgery to get that. cleaned out. But then they didn't clean it out all the way, the first surgery. So they had to do another surgery where they cleaned it out. And that was the first time that I remember my mom almost dying, like very vividly. And obviously, she walked away fine. But that was very intense because she was in the hospital for a very long time. Grandma was with us for a very long time.

and then after she got released from the hospital, she was still working from home. She wasn't in her working office anymore because obviously she just had a near-death experience. She needs to get her strength back. And I remember they had to take like a huge chunk out of her upper thigh. And like everybody has like hip dips, right? Right. Like they're normal. But like she had like a very defined hip dip that was more intense on one side.

and I know it made her very insecure and that really broke my heart because to me I'm like I would rather you have that that not be here right but I'm also very sensitive to the fact that like being a woman is hard and our image and how we look is constantly being picked apart and like you go through this mere death experience and then people are picking you apart because you have a bigger hip dip on one side Like, I can't imagine, like, how awful that would feel. So she survived that. And then flash forward, I think I was about 13. And this is when I started to get really sick.

So I had a really, really, really bad stomach ulcer that I feel started to trigger the rest of my health issues. because that stomach ulcer, like I was on the floor screaming and crying in pain, couldn't eat anything. And after that, I just never was really the same again. And that was sucked as like a 13-year-old, 13-14-year-old, like going through something like that, having all of these doctors all of a sudden all around you, you're seeing all of these doctors, and then you're stuck on the couch because when you have a lot, an ulcer, you can't do much because you're in a lot of stomach pain. You have to keep eating every couple hours. There's a lot of medication that you have to take. And as like a 13 year old going from

being perfectly fine to that was very intense. And I kept having stomach issues. I mean, I still have stomach issues, but that's kind of where it started. Up until I was like 15 is when it started to get even worse. And it wasn't just like stomach pain. It was like I couldn't keep anything in. And I was losing a lot of weight. And I wasn't getting any nutrients from the food that I was able to keep in because the inflammation, I didn't know that at the time, but the inflammation in my stomach was so intense that I just wasn't absorbing anything. And I dropped like 10 pounds in like a couple of weeks and like the people around me were like commenting commenting on my weight and that is lovely. I love that so much, especially as a 15 year old, you're sick. You don't know what's going on.

And then somebody in the outside is like, wow, Tia, you look so thin and small. Like what's wrong with you? And you're like, I don't know. I don't know what's wrong with me. Can we not comment on it, please? And I think at my lowest, I got like 98 pounds. and like as a growing child like that's really dangerous right and so I eventually got into a gastrologist I think I'm just going to call it a GI because gastrologist is a mouthful um it's basically just the tummy doctor and my PCP or my primary care was like I have no idea what to do with you like I don't know why you have these symptoms you don't have an ulcer anymore but I don't know why you're still having also like symptoms and why you just are so sick, go talk to this doctor is basically what they

told me. And then I think an important side note here is at this point, my parents got divorced. So it's me and my mom and me and my dad and I'm bouncing back and forth. And we were living off of my mom's disability because when she almost died with the hip incident, she never fully recovered and she was able to get on disability part-time. And disability is hard to live off of because it's a very strict amount of money that you get once a month. And to be quite honest with you, it's just it's not enough for most people. But she was trying to live off of her part-time job, disability, and taking care of me. And for one person, that's a lot. Yeah. It's a lot. And so we didn't have a whole lot of money growing up. I shouldn't say growing up, but at that time,

and I think that's an important side note for later. So I started going to regular appointments like every two, three weeks, like pretty regular. It became a routine that mom was picking me up from school. We were going to my doctor's appointment, and then we were getting a treat after. And I didn't realize at the time why she did that because I'm like 15, 16. I'm not really here. I also like struggle with disassociation. So I was already not here. And then you're, I'm dealing with all this health stuff. So I'm very much checked out. Not really paying attention to what's going on with my health stuff. But after every appointment, she would pull me aside and she's like, do you understand what the doctors are telling you, do you have any questions? Do you not know what they mean? Do you want me to

say this for you? Was very much like, do you feel okay? Well, how can I support you? And I would always tell her no. Like, no, I understand what they're saying. I don't have any questions. That was not true. I had no idea what they were saying to me. I was very much checked out, but I didn't want to deal with it. So I was like, yeah, mom, I understand. It's fine. But after each appointment, She would, we would go out to eat or she would get me like a little treat, something to be like, good job, you did it. You went to an appointment. And that became like a ritual for me. Like I do that now as like an adult.

I like will get myself like a little treat after like one of my intense doctor appointments just to kind of relieve that stress and kind of just a little self-care. but for like I didn't realize how much of a strain that was for her because we were living off of her disability and her part-time job. We already didn't have a whole lot of money. So I think for her to try to make sure that she was taking care of me and my mental health as much as she could is I don't have words to describe it. You're a baby. Yeah. Like it's just very motherly. That's the only way I can describe it. And so I now get myself treats and little goodies after my appointments. But the gastrologists or the GI eventually decided that they wanted to do an endoscopy colonoscopy. And that is where they stick a camera up your butt and also down your throat. And at the same time.

And to do that, it's just like any other. kind of surgical procedure you can't really eat before but you also have to do a cleanse for a colonoscopy and for a 15 year old to have to do a cleanse like that because most people don't have their first colonoscopy until they're like 45 that's usually when you start getting screened normally and as a 15 year old it was incredibly embarrassing yeah and I didn't really understand what was happening and my mom's like you have to do this you have to not eat this you have to take this medicine, stay close to a bathroom, and try to rest for the rest of the day. And I didn't notice what was happening. And so that was really intense. And I've never been under anesthesia like

that. And she's, she's rough. Did you go fully under for that? Okay. Yeah, my mom held my hand. And they counted me backwards. And when I woke up, I was in the recovery room and I had no know what happened. And I was very loopy and out of it. And the nurses kind of had to help me get around for a little bit. And then they were like, okay, you're good enough to go home. And they sent me home. And then what they found was, um, I had a yeast infection in my esophagus. I, yeah, it was not, never even heard of that. I didn't know it was a thing until I had it. And makes sense because I couldn't swallow at that time. Like anything I was able to eat hurt like hell.

And I couldn't swallow anything. And I had a bunch of inflammation in my stomach and in my lower intestines. And they still were like, so we see things are bad. But again, we don't know why. So they gave me like a prescription ant acid, basically is what they gave me. And they gave me like a diet to follow. and like I didn't really eat like tomatoes for example because they were really acidic. And I just recently started eating tomatoes again.

And this happened when I was like 15. So yeah. But I kept having stomach issues with that and they were treating the symptoms. And then eventually at the time I didn't know how I got into C. an immunologist, but eventually all of a sudden I stopped seeing the gastrologist and I started seeing the immunologist. And because mom was handling everything for me and was kind of just taking me with her and was very much advocating for me. I'm Anna Garcia, host of True Crime News, the podcast. Every week, we bring you in-depth coverage on cases making headlines as well as

those that go under the radar. Tune in for murders that defy explanation. nation, mystery seeking exploration, and shocking secrets that will leave you breathless. Each week, we honor the victims by going beyond the salacious in our search for justice. Crime never stops, and neither do we. Listen to true crime news available now wherever you get your podcast. I didn't really know what was going on. I was just going with the flow and just was like, basically, like, I don't feel good. Somebody helped me.

And mom was taking care of all of the behind-the-scenes stuff for me. And how was her health at this? time. She was not great. She was stable, but she was still having like her GI issues, her arthritis issues. She would still get sick often, stuff like that. So like she wasn't in the best of spots either. And she's trying to take care of me. And I honestly cannot imagine like how heartbreaking that is to like watch your kid go through something that you're going through. Yeah, it's a lot. And like not being able to help them. But she really did help me a lot more than she realized at the time. But so I started seeing an immunologist and I don't, I didn't realize until honestly I did this podcast and I was getting all of the information.

My mom was seeing an immunologist and a rheumatologist, which is like the arthritis doctor. And the immunologist and the arthritis doctor were in cahoots in the background and they were talking to each other about mom because she was a as the doctors say a complex case and so the immunologist was like hey I'm part of this research study for CTLA4 why don't we get her tested for this it sounds like this is what it might be and it turns out that they were right so mom was the first one out of all of us to get diagnosed with CTLA4. And obviously, my mom's thinking of me, looking out for me. So then she's like, well, can't we get my daughter tested for this?

So up until that moment, she was not diagnosed with that. Okay, got it. So all these things were kind of just happening and they didn't know why. Right. And they didn't know why. And I do remember she would get frustrated a lot because they were only treating her symptoms. Got it. And they weren't like telling her why she was having these.

things and I remember as a kid being in like a couple doctor appointments where they were like yeah we know this is frustrating we don't know why this is happening here's this prescription medication that might be able to help your symptom right like it was not great and we used to make jokes that we could start a pharmacy with the amount of medications that we had because there were so many right and then you have this medication for this symptom but then that medication gives you this symptoms. So you take this medication for that symptom and it was just like snowballing. Snowballing. Exactly. So then she got diagnosed with CTLA 4 and then they bring up me and they're like, can we get my daughter tested for this? And that's how I ended up seeing the immunologist was because of

my mom advocating for me in the background. And thank God, our immunologist, I love him two pieces. He is one of the best doctors that I have ever experienced in my life. He's amazing. He is specialized in children and adults because in Colorado, I think there's like a total of like, what is it, two? Like two immunologists in the entire state, which a fun fact, my fiancee was doing jury duty and met the other one. Oh my gosh. That is crazy. It was really crazy.

really excited and he was like, I know about you. But I ended up seeing him and I still see him. I actually see him next month. And he's just one of the best doctors ever. So then I started seeing the immunologist pretty regularly. And my immunologist visits kind of turned into family appointments, which honestly is kind of cool because it made me not feel alone. Because it's, I I remember my mom never liked sitting on the exam room table. And I never understood why until I started going to the doctor all the time. And now I don't like sitting on the exam room table. I would rather sit in the chair.

I don't want to be on the exam room table unless you're going to poke and prod at me. It's just doing this is already hard enough. I don't want to make it worse by sitting on an uncomfortable table, feeling very exposed. And so having like my family with me, it made me feel supported. So it would be like my mom, my sister, and my niece, and all of us in this tiny little children's hospital room for all of my appointments. And so they started doing tests on me to try to figure out what was going on. And I remember they, I remember the day that they did like most of the testing.

because at this point, I'm like 17. So I'm like a sophomore in high school. I'm like 16, 17. I think I was about to turn 17, if I remember correctly. And so they did a bunch of tests. They did, I'm pretty sure they did. I know they did an MRI for one of them. But another one that they did that really kind of made me realize how serious all of this was

is they took a lot of blood, like a lot of blood. And I was anemic because of all of my health issues and all of my stomach issues up until that point that I remember telling them and my mom backed me up on this when I was like, you guys cannot take that much blood for me because they wanted to take more than they already were taking. I was like, I don't feel comfortable with that. Like I already am anemic, no. And my mom was like, yeah, no, we're not doing that. So they took a lot of the tests out because usually when they do a blood test, they have like specific like little test tubes for each test. And so they kind of like talk to the doctor real quick and they're like, okay, well, we can use this test tube of blood to help with this test also.

So they kind of figured it out for us, which is great. But they still took a lot of blood, enough that like when I went back to school after, I was really like lightheaded and kind of. nauseous. Yeah, I don't like, that's like, I hate it. Yeah, hate it. Just very much not feeling good after, because they took a lot from me. I feel like too. I mean, I'm somebody that I just have horrible nerves around that. And I feel like you can almost feel it. I mean, well, you can, like feel it leaving your body. And that's a different type of like lightheadedness. Yeah. It's, yeah. And plus like when you feel like that, I think your nerves will like, be like, oh, I feel bad. And then it intensifies it. Oh, for sure. Oh, no. I do not. I don't do well with that at all. Yeah. I surprisingly,

because I know a lot of people are like, I don't like needles. I don't like that. And I do not blame you. Like getting your blood drawn sucks, especially if the nurse didn't get it right the first time because they'll dig in your arm. It hurts. It hurts so bad. But my mom was a medical assistant. So for when I was a kid, she did all of my vaccines. She took all of my blood. She made it a not scary thing for me. Now, now I don't like it because I don't have her to like take my blood or give me my vaccines or things like that. And she was a very good poke. I was going to say some people are very gentle and very good about it. And then others, it feels like they're putting something so thick in your, oh my God. Yeah. I'm sorry. It's disgusting. I hate it. It's very uncomfortable.

And I remember I had like my blood drawn or like it was a couple weeks like after she died and it was like by myself and the nurse missed and she was digging in my arm. Oh hell no. And I had to be like, please do it again. I'd rather you poke me twice than dig in my arm because that's literally I had a bruise. It was terrible. Absolutely terrible. Okay. Well, knock on wood, I've never had anybody missed.

But if that happened, I'm already terrified. I don't know if I'd ever be able to do it again. Just tell them about that area. It's horrible. No. No. No, ma'am. No, not for me.

Thank you. Just do it again. Just do it again. Oh, no. No, I don't like it. There are, I don't know what it is. Like, I think some people, I don't know if it's that they're bad at it or they're just not like as, I don't know. There's multiple different factors that come into it.

It depends on the nurse. Some nurses, it's just they're really good at it. Right. Some nurses, they're not so good at it. Or it's if you didn't drink enough water, if you didn't eat, there's multiple things that come into a factor. But I will always say if they miss and they're digging, tell them to take it out and do it again.

Part of that is like a nightmare. It's terrible. Oh, my God. Oh, no. I'm very, very, very, very lucky and grateful that my mom was able to do most of my blood draws. I remember one time we were doing it together for like, so they did like the big test and then they did like follow up test to see how like all of my levels were at. And I remember the nurse missed a couple times and I looked at my mom and I was like, can you just do it? Please, you just do it.

I don't want to do this anymore. She keeps missing. And my mom was like legally I'm not allowed to, but otherwise I would because I was like, this is terrible. And when my mom does it, it makes me feel comfy. Right. And this not so terrible. Well, great. I'm glad that you've now given me another fear.

I'm so sorry. I never even thought about that aspect. Like my whole thing was like, oh, as soon as they poke it and they take that stupid thing off. But now it's the fear of like of them missing and digging. Yeah. Oh, my God. I can't even. Terrible.

I'm sorry. No, you're fine. Now you're aware. And now if they do it, just tell them to stop. Oh, my God. Sorry, I'm just thinking about how terrible that would be. horrible. So they took a bunch of blood for me. I started feeling really dizzy and lightheaded throughout the day. I'm pretty sure I went home early that day because I was just not feeling good.

Obviously, you took like a lot of blood from me. But then they ran a bunch of tests and I had a follow-up appointment. And I remember this follow-up appointment was different. Like very different. Mom, I could tell was anxious about it. And she made a very very, big deal out of it. She made sure that my dad was there. And at this point, one, they're divorced, but two, my dad is a truck driver. So he's in and out of the state trying to provide for me. And so she was like, you need to be here. And she let me bring my boyfriend at the time. And it was a big thing. So we all crammed into this little children's hospital room. And I'm sitting on the exam table, obviously, because they had to like pull a chair in from another room for my dad and my mom,

because there's only like two chairs in there, usually. And my boyfriend at the time, he stayed in the waiting room because it was too much and he just, he didn't need to be involved. Yeah. And that much. And the doctor comes in and he basically explains to us that what CtLA4 is and how it's treated and basically it is a lifelong disease that I'm going to have to deal with for the rest of my life is basically what he tells me. I'm 17 and you're telling me that I have to deal with this lifelong illness for the rest of my life. That was a lot. I remember I blacked out, was not aware of what was happening. and I remember I like left the room for a minute and I like walked out and I walked to my boyfriend who's like 18 at this point and I'm like I have this disease I have a lifelong illness I have to do

all of these things and he's just staring at me bug-eyed like I have no idea what you're saying and I feel bad for him because he's like 18 we were only dating for like six months at this point And I'm like, I have this thing and he was like, I don't know what to do with this information. I'm sorry for you. Very intense situation. And I remember I walked back and then I don't remember anything after that. And after that, they set me up on the IVIG and the Eurencia. And the way that they set it up.

So I call my IVIG. I call it my big guy because it knocks me on my ass for like the rest of the day. And it takes like four hours. And is that just like a medication or? Yes. So it's an IV medication. Okay. So it's in like a liquid bag.

They put it on the IV pole. They stick a needle in my arm. So yeah, they stick a needle in my arm and they just slowly inject it for the course of like three to four hours. And how often do to do that? I do it once a month, so every four weeks. Okay. And that's something that you have to do for the rest of your life. I have to do it for the rest of my life. And so the way that they set it up is I would have my IVIG at the beginning of the week,

and then I would have my Arensia at the end of the week. And they set it up that way because they needed them to be close together, but still give me time in between where I can like heal in between. between and now um I'm like in my mid 20s um I don't do both infusions anymore I do injections so I do my IVIG once a month and then I do injections that I give myself every week okay and it's like a little like almost like an Epi pen where you just kind of click it and the needle goes in and the medicine goes in just like that okay so I do that now but I did started doing that like two or three years ago

And then do those injections have any sort of side effects? No. Not really for me. Not the injections. The injections, like the injection site might get like a little itchy. Right. But I've been on this medication for a very long time. My body is very used to it.

And these medications are basically to prevent your body from attacking itself. So you don't get like these other issues. Right. So the Urensi itself combats. the genetic disorder. So that helps with like my arthritis, my tummy issues, my alopecia, things like that. It kind of settles everything down. And then my IVIG, that gives me my immune system, which protects me. So like I can go on a plane and not have to worry about getting super sick. It's basically just like regulating you to like a normal type of. Yeah, it helps me be normal.

That's a good way to put it. And so my IVIG takes like four hours. That one, knocks me on my butt. I get very, very sick after. And the best way I can describe it is like being drunk, like incredibly drunk and hung over at the same time. It's terrible. And like because mom has been on it for like years at this point, she knows all the tips and tricks. And she made sure that I knew them, which is like eating before, sleeping during, eating after and then sleeping the rest of the day. And I didn't listen to her when I first started doing this by myself and I would do things after it. Oh, God. And I would get so sick after.

Oh, no. Because just in general, I call it my infusion hangover because even if like now that I know what I'm doing, I do my infusion. I make sure I eat and sleep. But even if I do everything right, I still have like a migraine for like the next three days. And but if I don't do everything I'm supposed to do, if I didn't eat enough, I didn't sleep enough or if I pushed myself too hard. Car you out. Right.

Like I'm going to be sick for probably the rest of the week into next week. So it's not even just like that that day. It's a couple days. But personally, I would rather take me out for a couple days, but give me the rest of my month. Yeah. If that makes sense. Yeah. I would rather have that than like to constantly feel sick or constantly have to be in bed

or constantly have to call out of work because I'm just sick. Right. So it's more like a routine. Yeah. It really is. And I have tips and tricks that I have in learning and trying. I just discovered a migraine like little mask helmet thing. They're amazing.

Good. I love them. I need to get more like if you have a migraine, get a migraine helmet because they're amazing. You put them in the freezer and then. We get heard of that. Yeah, they're great. You put them in the freezer.

and then it's like a little wraparound thing. And then it's black. Mine's black. But it blacks out all of the light. And then it like presses the pressure on your head, like on your temples. And then it's cold too. So it's like all the things to help with a migraine in one. That's amazing.

It's amazing. I freaking love it so much. But so mom was already on the IVIG for like a year before I was. and then they were putting all three of us, so my mom, my sister, and me on the Erencia. So that was the new medication. So this would be like my sister's first time on it, my first time on it, and my mom's first time on it. The IVIG, that was just me and my mom exclusively. But my mom already knew what to do.

So she was like, okay, here's what we're going to do for you. So she would take me to children's hospital. She would sit in the hospital with me. She would make sure I ordered food from the hospital, but also she would get me food after. And she just really showed up. She was a mom. She really took care of me during those times. And after like the second or third infusion, so I like about two or three months after we started like really getting this treatment consistently, we all started to feel better.

Like our symptoms definitely didn't go away. but when you are dealing with something chronically and constantly, if you have a good day, you're going to notice. You're going to notice when you're not in as much pain or your stomach isn't in as much pain or when you can eat a little bit better that day, like you're going to notice. Yeah, and I think too, when something is so bad, this, like you said, the slightest bit of relief feels immense. Right.

And that's how it felt. And I remember like all three of us were like celebrating. And it was like, you don't feel like. shit, I don't feel like, this is amazing. Like, oh my God, we finally, like, cracked the code to figure out what was going on with us. Like, it was a really great time. I remember being very excited. My mom was ecstatic, and I completely understand why.

Because at that point, she was, like, in her 30s, like, early, late 30s. And she's been dealing with this stuff chronically to finally have an answer. Like, I can't imagine how, like, relieving that would feel. So then we were on this medication for a couple months. So it didn't take its full effect yet, but we could notice the difference. And so mom went to the hospital because she was having constant sinus pain and a really bad headache. And they found an infection, but they weren't exactly sure what it was, how bad it was. anything with your face is very serious. So they admitted her and they wanted to run a bunch of more tests.

And at this point, I graduated high school. I'm still 17. I like graduated like a year ahead of my class. So I went from high school to cosmetology school straight through. And so I'm 17 at this point. I just got diagnosed. and I'm starting cosmetology school. And mom gets admitted like the same month that I'm starting cosmetology school. And I remember I'm trying to focus in class and like learn how to do a basic blowout. And I'm like not focused. I'm not there at all. And I tell my teacher what's going on.

Hey, my mom was just admitted to the hospital. We don't know what's going on yet. And God bless her. She was like, go, go home, go be with your mom. Don't worry about this. Like you just started, you'll catch up. I will help you. You're fine.

So then I leave. And mind you, this is downtown. And the hospital and where me and my mom lived were in the suburbs. So I took my car to the light rail station and then I would take the train. So I had to take the train back, which takes like 30 minutes. And then I had to drive to the hospital, which was like another 20 minutes. So there's quite, it was a trek back, basically. And so I get in the hospital room and I set my stuff down and it's just me and mom.

And the doctors come in. And they're like, hey, so we got the test results back is now a good time. And mom was like, well, yeah, tell me what's going on. And they basically told her that there is a. a fungal infection behind her eye that has wrapped around her optic nerve and is reaching for her brain. And they told her, we're going to try to do this experimental surgery, but you most likely will lose your eyesight or you're going to die. Those are your options. What would you like to do? And obviously, she's sitting there like, that's not really an option. Like, do the surgery.

I don't want to die. So they were saying if you don't do the surgery, it's just like a death sentence. Right. And they were also saying that we can try this surgery, but if it's not successful, you're going to die anyways. Okay. And I'm 17. My mom's obviously crying and falling apart.

And I'm just holding her while she's falling apart, crying, trying to comfort her. And then eventually she like pulls herself together and she goes into action mode. And she's like, okay, I need to call my work. I need to do this. And it's like trying to make people aware of what's going on and what's about to happen. And then at this point, she's good. So she, I calmed her down. I left and I called my sister and then I broke down.

And I was like, they just told me mom's going to die. Like you have to come down here like right now. and so they do the surgery and it is successful but she does lose eyesight in her left eye and then while she's recovering it's now my sister and my mom in the hospital and they're chit-chatin and then my sister looks at my mom and all of a sudden her nose starts bleeding and my sister calls the nurse and they just rush her rush her, excuse me, to surgery. Again? Again.

And how soon after was this? Like a couple days after. And turns out she had a small brain aneurysm after the surgery. So they ran her to surgery again. And was that related or no? I think it was. Just because that area was already so damaged from the fungal infection. And like everything was very.

very traumatized up there is probably the best word to say that from like the fungal infection them going in there scraping everything out that like and then she's trying to heal from her initial surgery like a couple days after that like it was just a whole mess a whole storm of things really and then she gets through the surgery for the brain aneurysm and then they keep her for a couple more days. And at this point, they move her from like the ICU to the regular rooms, which is a good sign. Whenever you're moved out of the ICU, it means that you're healed enough that they don't feel like they need to monitor you as closely. It's a very, very good sign. So then at this point, we're like, okay, we're about to get out of here. We're about to go home.

We need to start making next steps. And me and my mom are in my sister, like walking around the hospital. And we're coming up with a place. plan because they would walk her around the hospital because most hospital floors are just in a loop and so we do loops around the hospital as she was trying to get up her strength and we decided that she was going to move to my grandparents house in Arizona because at this point they moved to Arizona they're no longer in Colorado and my sister and my niece were going to go with them mom was like you very much stay here like you just started cosmetry. school. I want you to do that. Like, I want you to live your life. You stay here. So I stayed here with my dad

and my mom and my sister and my niece moved to Arizona. And that was like in January. And mind you, she just had this traumatic experience, but she's still like walking, talking, is like able to hold herself up and is like able to plan a move, like complete bad bitch about all of it. And she was pretty much fine. She just needed to honestly get her medications and heal and she would have been fine. But at this point, they're in Arizona. I'm in Colorado and I'm in cosmetology school. And usually when you're in cosmetology school, you want to start working at a salon while you're still in school so that by the time that you're done, you already have that connections. You're already good to go. So I'm working on a very fancy high-end salon.

in the richer part of Colorado, my neighborhood town. And mom comes to visit for my birthday. And this is the first time that I have seen mom since she moved in January. And this is in April. And so she comes to visit and she comes to visit me at work. And she walks in and I almost burst into tears as soon as I saw her because she wasn't my mom. she lost like all of the fullness in her face she was using the counter to hold herself up she was obviously visibly weak and when I left her she wasn't and I almost started crying

because it was just very shocking for me in that moment to see her like that and at this point I'm like 18 obviously because it's my birthday and that was a very pivotal moment of, oh shit, this is not good. This is really bad. Because whenever she was sick before, she didn't look visibly sick. Like she was still very, like, strong. Very herself, exactly. And to see her like that was very hard. However, I paid for her to get a professional shampoo and haircut and she was so happy and it's honestly like one of my favorite memories and I was so happy that I could give that to her because that's something that her and I really bonded over is because when you feel so gross and shitty on the inside you don't want to feel that way on the outside and like

having your hair done or your makeup done and your nails done it genuinely makes you feel better at least a little bit. So I would do her hair, her makeup, I would do her nails, and I would do that for my sister as well. And that's why I initially wanted to go to cosmetology school is because I wanted to like open up a salon that was specifically for people who are disabled. That was meant to meet their needs, but also a place where they could feel safe, but also feel pretty or handsome. We're not judging. so I was very happy that I was able to give her that because it's something that her and I really bonded over and so then she goes back to almost at Colorado to Arizona my bad and this is when

things started to get real bad because CTLA4 is new and at that point it was 2018 so it was like only four years old. Not a lot of doctors knew what it was. And they quite honestly didn't want to treat her for it. And I'm going to start this off by saying that I think that's absolute bullshit because her treatment plan was already ready to go set in stone, was showing that it was working for her because she was on it for a couple months. There is no reason for them to not just be like, okay, well, this is what you had before. Let's follow that other than just purely ignorance. And I think that that's ridiculous because as a provider, you make an agreement to not have your biases and your prejudices and things like that affect your work with your patient. And if you don't know, it is your responsibility to work with your patient or find out the information yourself.

You're a provider. Yeah. You agreed to that. So for them to not do that and basically refuse to treat her is crap. And that's basically what they did. They said that she was too complicated and they didn't feel comfortable giving her the medications because they didn't think it was going to work for her. Do you think it was because of the doctors that were in Arizona? Like, do you think it would have been different if she was still in Colorado? 100%. Okay. 100% it was because of the doctors in Arizona. because when I left her, she was weak, but she was still herself. And part of the reason why she was so sickly looking when I saw her is because she kept getting

infections back to back to back to back to back. And what was the reasoning again that they moved to Arizona? Because she lost her eyesight. Okay. She had to relearn how to do everything. Okay. Because it was just very life-altering, but also she was very weak. if she needed time to rest.

Okay. So the plan was for her to move to Arizona, learn how to live half blind, and then move back up and live off a disability full time. Okay. That was the initial plan. And but she had to get her medications, her IVIG and her erensia that are her protection

for her immune system and combating her genetic disorder outside of that. So now she's going, without that because the doctors don't think it's medically necessary or they're wanting to give her other medications that she's like I know that's not going to work because I've this worked and I've already done this roundabout thing with the doctors in Colorado I know what's going to work and I know what's not going to work okay and because CTLA 4 was new and they didn't know anything about it and they didn't really understand how the treatment of it was and especially with

Arendia like I said before it's usually treated for arthritis patients it's not used for this specific reasoning yet that they were like yeah I don't feel comfortable with this I would rather you have tried this first and they just weren't giving her medications and with a specialty medication like this you can't just like go to CVS and buy it like you need a prescription from your doctor and they refuse to give it to her She tried to see other doctors, and it was the same thing that they just didn't feel comfortable to give it to her. They didn't think it was medically necessary, or they thought it was going to make all of her symptoms worse, which, again, is crap because she had all of the medication backing that it wasn't. It got so bad that, like, her doctors in Colorado got involved and were trying to advocate for her all the way in Colorado.

And like for doctors to do that, it's a whole thing because they can't just call each other up. Like there's rules and regulations with that. Like it's very much we're faxing back and forth. And you may not receive it right away because you have patients or your medical assistant didn't give it to you. Like it's not a fast process whatsoever. But because she couldn't get the medications that she needed, she kept getting sick like back to back to back. That's literally like when I, I don't have my medications, I get sick. I can get sick because my body's attacking itself, but I can also get sick from outside sources as well.

And because your immune system is so low, right? Exactly, exactly. And they just didn't want to give it to her. And eventually she got in or referred to, I should say, with a research hospital, which is what the hospital was that initially did her surgery for her eye in the first place. It was a research hospital, which are good places to be

because they are more willing to do those experimental things that can be lifesaving, just like it was in this case. So she finally got in with a research hospital in Arizona. At first, they were kind of reluctant, but then again, the doctors in Colorado were very much advocating for her from a distance, and eventually they agreed. They were like, okay, all right, we'll give it to her. And at first, she just got her IVIG, which was good.

She was starting to get her immune system. But then they were still fighting on the arencia because it wasn't used like this before. And then eventually they gave it on the erensia. But by that point, it was kind of like too late. And because she was so sick. And then now that we have the doctor's approval, we now have to fight with insurance. And insurance doesn't want to cover anything, especially if it's something that's experimental because, frankly, they don't understand.

And I personally think that insurances should have a doctor on staff, at least, that they could run these things by. And I don't think that they do because they deny a lot of things that can be life-saving. but so she ended up having a heart attack so now we have the approval from the doctor for the medications but we're still waiting on the approval from insurance and in that time she ended up having a widow maker heart attack which is one of the most deadly heart attacks that you can have they ended up putting a splint in her heart to keep her heart moving and she walked away from that amazingly. Don't know how she did that, especially being as weak as she was. And crazy. And so at this point, I'm no longer working at the salon. I'm now working at Sephora.

And just to give you a time frame of how long this took, I started my job at Sephora like a couple months before we actually opened because I was part of the opening team. So they hire you, they train you and like hotels and stuff like that. And then you open the store, like you yourself as the employee put all the products in and then they open it with their opening team. So this was like a couple days after we opened. And mind you, this training process took a couple months. So this whole thing took a couple months. And there's this. cafe, because this is in a mall, like across the street from where my Sephora was. And I was early for my shift. Mom texted me, hey, I'm out of the hospital again. And I was like, okay, cool. So I'm just

going to go over here. I'm going to check in with my mom and then I'm going to go to work. So I went to the cafe. I sat in a little booth. And I called her and it was like, hey, like, how are you feeling? How are you doing? Like, what's going on? What did the doctor say? What are next steps? how's everything with insurance, just trying to check in. And side note, at this point, my sister moved back up to Colorado as well. She was been in Colorado for like a month at that point. So it was just mom and my grandparents in Arizona, and it was me and my sister up here. And she did not sound like my mother.

She was tired. I could just tell in her voice that she was very, tired and growing up with her in the near-death experiences that she has had, she was very lively about it. So to hear her sounds so tired was really jarring. It was really jarring. It was like when I saw her again after the whole incident for my birthday, when she looked very weak, it was like, this isn't my mother. Like, this is really bad. And I remember I was checking in with her and she told me, she's like, I'm just so tired. I've been doing this for so long and I'm just tired. I don't want to keep doing this. And as like a kid, I'm like, I'm 18. I'm still a kid. Like I'm an adult, but I'm still a kid.

And it was really hard to hear my mom say that to me. And it was very like put me in a very tough situation because it's like she's my mom. I want her to keep fighting. I want her to be here. But I've also been there. And I've seen what she's gone through and how real some of this stuff has gotten that I can't feel anything but empathy and sympathy for her. that the only thing I could say was, I know, I know you're tired. I know that you've been fighting for so long and I don't blame you. I would be tired if I were you. And I was like 18 and I've been dealing with this stuff since I was 15 and I'm tired. Like I can't possibly imagine how you feel. Like I get it and I'm sorry. Like I wish I could take it away from you and I could just make it all better. And this was like right before Thanksgiving. It was like literally the day before.

And then Thanksgiving happens. And then I am, it was my day off. It was like a couple days after. It was like, to be specific of how quick this was, it was like a day or two after Thanksgiving. It wasn't very long. And I'm walking inside my house. I just got food. It's my day off.

I was just going to hang out. And I get a call from my sister and she's like, hey, mom's on a ventilator. We got to get down there like now. And I freak out, obviously, because I talked to her like a couple days prior and she was fine. She was exhausted and she was tired, but she was fine. And my sister was like, I don't know, we have to get down there. I'm getting tickets.

You take care of things on your end and we'll talk later about getting to the report. I jump into action mode and my brain turns off and I just start doing things. And I call my dad. I let him know what's going on. And then I'm like, okay, I have to go to my job. I have to let them know that I'm going to be leaving like now. I just don't know when yet because Janelle was trying to buy the tickets. And I got in my car and I'm sitting in my car and I can't move. I can't drive. I can't turn the car on. And the only thing I could do was call a couple of my friends. And I call them, I tell them what's going on. They rush right over and they're sitting there in my car with me trying to calm me down and walk through all of this. Eventually, they calm me down and they're like,

do you need me to drive you to work? Do you need to drive to work? And I was very much like, I need to drive. I need to feel some sort of control right now. I'm going to drive to work. You guys just sit with me and just talk to me. So we drive to my work. I let them know what's going on that my mom's on a ventilator and I'm going to have to dip in probably like the next couple days. And then, but this entire time, I have this ungodly heavy feeling of dread and like I just need to talk to my mom. It was like so much anxiety. And it was a very obsessive thought that I could not get out of my head. And I was like, I need to talk to my mom.

I need to talk to my mom. I need to talk to my mom. And I tried to call her. Obviously, she's not going to answer me, given the situation that she's in. So I call my grandma and I'm like, are you with mom? I need to talk to her. Where are you? What's going on?

And she's like, I had to go get some more clothes. I'm on my way back to the hospital. I'll call you when I get there. and so at this point I talked to my work we're sitting in front of my work in my car and my friends are like okay well your grandma's going to call you when she gets mom on the line like just for now let's get you some food because you still haven't eaten and you need to eat so I was like okay so we go and we get food and as we're sitting down to like eat the food that I am getting my grandma calls me back and she's like okay, I'm going to put mom on the phone. Here's mom. And I literally just said, mom, and she's trying to talk to me,

and she's just like gargling at me is what it sounded like, because obviously she can't talk to me, but I could tell that she was trying to. She was trying to talk to me. And I remember sitting there in complete shock, and I just told her, I was like, it's okay. It's okay. Me and Janelle are going to be okay. I love you. I am so proud of you. It's okay. Like, we're on our way. It's going to be fine. Like, you did amazing. It's basically what I told her, and I told her that I loved her so much. And then I hung up the phone. and then I just kind of sat there in the booth and I was just in complete shock. Like I couldn't say anything. I couldn't do anything.

I couldn't even cry. And I was in complete shock. Next day happens. I don't know why. I decided to go to school the next day, but I did. And I'm going to school. And one of my friends that came to rescue me that day also went to my cosmetology school. and we lived close together.

So we would take the train together. So we're sitting on the train and she's sitting next to me and she's just literally being the best friend on the planet and it's just walking me through this. She's like, okay, it's a classroom day. So it'll be really nice and simple. We're going to tell our teacher what's going on and like whatever you need. I'm here for you. And so we get on the train and we're driving.

we're riding the train to school and we're like one stop away from our stop to get off and i remember it was literally like a movie like she was talking to me trying to coach me through this and her voice kind of just got like mute and kind of echoy and i remember just kind of zoning out and I remember this like horrible heart-wrenching feeling and I don't know how else to describe it other than like a piece of my soul dying like in that moment is how it felt and I remember my mom's like presence just like I felt like her presence standing behind me and I was just sitting there like I don't know what's happening and our stop arrives and we get off, we literally go downstairs, we put our stuff down, and then my dad calls me. And my dad calls me and he's like, Tia, where are you? Have you talked to Janelle? Like, what's going on? And I'm like, no, dad, I just got to school. Like, nobody's talked to me, what's going on? And he's

like, okay, well, Janelle's on her way to get you. Let me know when you're with her and call me when you're with her and we'll figure it out from there and I'm like, dad, what is going on? Like, please tell me what's going on. And he got really quiet. And he was like, she's gone, T. I'm sorry. And I remember sitting there and I was like, I know. I felt it.

I know. Mind you, I felt that. And literally two seconds later, it felt like my dad calls me with that. And then I know my sister. wanted to tell me it in a very delicate way, but I cannot fault my dad in the slightest for calling me and checking in on me because I cannot imagine what he was going through at that time. Like, he loved my mom, even though they were divorced. He loved her till the very end. Like, whenever she got sick, all of the fighting stopped and he was there for me and for her. And I'm as

kid and your kid just lost their parent, obviously you're going to freak out and try to make sure that they're safe. Like that's terrible. And a lot of times when people are in those types of situations, they make very rash or not safe decisions. And I can't fault him. I don't feel any anger towards him. I don't feel anything, but just understanding towards him that he was just trying to make sure I was okay because this was a very serious, heavy thing that I was going through. But I get off the phone with him and then I walk back to class and me and my friends were sitting at the edge of class and it was like the door, a little bench right in front of the door and then you would turn left and it would be the rest of the classroom. So we were sitting on the very back of the class right in front of the

door. And I remember I just walked up to the door. I looked at my one friend who was on the train with me and she was up. She was moving. She knew what happened and she was like, okay, let's go. I didn't have to say anything to her. And I turned and I ran and I went to one of our break rooms and I broke down. Like I've never cried that hard in my entire life. And she's comforting me. My other friend runs out after telling the teacher what happened. She's comforting me. And then I look up and all of a sudden, all these people are around me, like the head of the school, my teacher, my friends, everyone's like around me trying to comfort me. And they like kind of hustle me into an office because obviously I'm crying very loud and they're trying to

give me some sort of privacy. So they like kind of push me into one of the offices. so I can try to calm down. My sister calls me, or I think I called my sister, actually. And she was like, I'm on my way to get you. Just hang tight. And so I'm sitting in the office now, waiting for my mom to come. And then by this point, the entire school knows what just happened. The entire school.

In fact, I worked with one of the teachers that was a teacher at that time when I was at my school. And I worked with her at Sephora, and I, like, made a comment about how the entire school watched me experience the worst day of my life. And she was like, yeah, I remember that. And I was like, cool, thanks. I'm glad you remember the worst day that ever happened to me. And it was honestly embarrassing to have the entire school look at me like that. And, I mean, they were all really great. they all like collectively gave me a bunch of money towards the funeral funds which was really great they didn't have to do that

but it was also very embarrassing at the same time again i don't think it was my dad's fault i don't think it was anybody's fault i think everyone just didn't know what to do in that moment and they were just trying to help so then yeah that's when i lost her and then me and my sister went to Arizona after that and we took care of her stuff and I remember because I slept in her room and my sister slept in the spare bedroom that my grandparents had and it was a very weird feeling. It was very comforting but also very lonely to like be sleeping in her bed and not have her there. It was very surreal. and I think at that point I completely broke mentally and I went through psychosis.

I didn't know that at the time, obviously, but as like myself now, looking back, I'm very aware that that is what I went through. My brain broke. I had no idea what was going on, what was real, what was fake. experienced very severe levels of disassociation for years after that. And I had a very hard time coming back from it. And I remember when I kind of snapped out of it a little bit the first time. I was watching Grey's Anatomy in my room. And there was this episode where one of the doctors was like she's more than just a patient. She's a person.

She's a mother. She's this and that. And turns out he was talking about his mom and how he lost his mom to malpractice and was trying to educate the other doctors to do their very best. And I broke down. Just like I did when I first lost her

and I cried so heavily. I almost threw up. It was terrible. And I have never watched Grey's Anatomy. after that, it's too triggering. I cannot do that. And that's kind of when I realized that I need help. Like this is really heavy stuff and I can't deal with it by myself. And mind you, I'm still kind of going through psychosis. I'm still disassociating, going from one place, not remembering how I got there, stuff like that. And I ended up going to see a therapist.

And she was like, what are you in here for today? And I immediately broke down. And I'm like, my mom died. And she's like, oh, my God, okay. And it's just trying her best to help me. And I saw like two different therapists within that two years that just weren't the right fit for me. But we're trying to do their best. And then I started seeing who I am currently seeing my therapist.

now and I've been with her for almost two years and I absolutely adore her. She's literally the best therapist ever. She's helped me so much through so much. And I still see her and she's helped me process a lot of trauma in my life, process my mom's death a little bit. And without her and without myself, honestly, I would not be able to be the person that I am today. and handle this at all. And now I'm just trying to heal and live my best life and do the things that I want to do and do the things that absolutely terrify me, like starting a YouTube channel and things like that I've always wanted to do, but I'm afraid to take that leap and just trying to be brave, really. And it's very much rooted in my mother because of how brave and strong she was and how much she

advocated for me when I very much could not advocate for myself. Because to be quite honest, if she wasn't there to kind of take me to those doctor appointments and walk me through those things, I don't know where I would be. I would not be here. And it's because of, of her that I have the opportunities that I have. I know what medications I need to take for me in my healthy life. And I know how to advocate for myself after watching her do it. And without her, I wouldn't have the opportunities to live a longer, healthier life than she did. And it's very bittersweet because it almost feels like she gave up her life so that I could have a better life. and it really sucks.

And it's also very full circle at the same time. And it's just really hard, quite honestly. But I'm very extremely grateful for her and her advocating for me and giving me the opportunity to have the things that she didn't. Because if she had the medications that we have now when she first started getting sick, she probably would still be alive today. wouldn't have had half of the near-death experiences that she's had. And now I'm sitting here, like, in my mid-20s and I've been on this medication since I was 15, or excuse me, 17, I'm in a much better place.

I'm going to have a longer, healthier life. Like, my medications include my IVIG, my erincia, my birth control, I take Zelgans for my alopecia, and that's it. everything else I treat organically or naturally unless it's like I need Tylenol. Like for example, because I have a fever or I have a migraine or something like that. And like not having to be on as many medications to function, it's because of her and her advocating for me. And that's a big reason that I wanted to come on here and talk about my story because it is so important to advocate for yourself so important and it genuinely can't save your life or others because

doctors are people too and no matter it's frustrating because they shouldn't be this way but it's also like they're humans people's prejudice and ignorance and things like that they're going to come into play even when we don't want them to or they shouldn't so you have to talk to your doctor you have to educate yourself. You have to do these things. And it's frustrating, but it's so important because this is sadly the world that we live in where these outside effects, excuse me, outside factors do have an effect on us, even doctors. And doctors don't know everything. They know a lot, but it's not possible for anybody to know all of the things. So work with your doctor. And if you can't find a doctor that's willing to work with you, to find out what's going on with you, find another

doctor and tell people around you, like, how to advocate for you. This is my health needs. This is the medications that I take. These are the doses that I take. Even if you just have to write it on a piece of paper for somebody else to give to the nurses, if you're not able to, just somebody there to advocate for you when you're not able to. And I'm very much aware that not a lot of people have that. They don't have family or their friends are far away or whatever the reasoning is, I personally think that there should be programs where all the people do is just go to doctor appointments with people and advocate for other people who don't have anybody. Or, for example, like, we take my grandma to her doctor appointments because she moved back up

to Colorado after my mom died. And so we take her to her appointments, but we're very much advocating for her in those appointments, but not everybody has that, but they should. And I think programs should be created where people can have that because it's important, because we're constantly learning new things. New diseases are being discovered every day. So having somebody and advocating for yourself is, it's going to save people's lives to be quite honest with you. I agree. And I just want to say, first off, I'm so sorry about your mom. And second, she was such an inspiring person.

Like to go through all of those things and to remain positive, not many people are like that at all. And I think that that probably taught you so much where obviously, yes, for the rest of your life, you're going to be dealing with, you know, the illness that you have. But I feel like having been raised by somebody like that, it kind of makes you such a stronger person mentally.

Oh, for sure. And it's like, okay, well, my mom could do it so I can do it. You know what I mean? And like she was somebody I feel like that could get through anything, obviously, pretty much, which is just incredible. And to remain that positive is insane. But besides that, even your story is so incredible. And your mom would be so proud of you because not only did you share your story

in your experience, but you almost gave you. gave her a voice, which is so incredible and so important as well. And you were such a good storyteller, seriously. You did incredible. And I'm so grateful that you wanted to come on here and share both of your stories, your whole family, basically your whole story. And that's amazing. And I think, like you said, I can't, I can't and you can't express it enough how important it is to advocate for yourself. Because, yeah, doctors are human. And unfortunately, things go wrong. Things happen. but never, I always say this, always get more than one opinion. Never take one answer as your only answer.

But yeah, your mom, seriously, incredible. She was amazing. Yeah. But I love her and I miss her so very much. I'm sure. But you did such a good job shedding such a beautiful light on her, seriously. Thank you. And even on yourself.

And it's obviously going to be somewhat of a complicated journey. but I feel like too you are lucky like you said that you had her there at such a young age to kind of help you get started on what you need and to advocate for you because it did kind of set you up for more I think understanding and to even know within yourself like I feel like you probably have a way better judgment that if down the road something else comes up or you talk to certain doctors and you don't really feel like I don't think that's right or I want another opinion I feel like she gave you that kind of insight where now you know like okay, let me not just trust everybody or just take it.

You know, if you have that gut feeling to kind of sort through it and get more than just one opinion. For sure. And like my aunt used to work. She's retired now. But she used to work as the head nurse in the COVID unit in an ER in Florida. And so like she's, she knows her stuff. But one thing that she said to me that like always stuck with me and really like ground that

like idea that my mom gave me home is like providers are there for you technically they work for you right i'm not saying go out there and just like try to fight a doctor or anything but like understand that like you have a say use your voice exactly and i don't feel like a lot of people know that because like we trust professionals as we should but you still have a voice like for me for example My entire family has arthritis. Every single woman in my family has arthritis. I started seeing a rheumatologist, and they told me that they didn't think I had arthritis. Mind you, I have the family history.

I have the genetic disorder. And I, like, talk to my sister who has arthritis, and my flare-up symptoms were the exact same as hers. I would get fluid in my knees, all of the things. And they were like, yeah, we don't think it's that. We think it's fibromyalgia. And I was like, I don't think so. Right. Like, I don't agree with you.

So I stopped seeing them because they weren't listening to me. And that's okay too because some doctors just aren't going to be right for you. Just like some therapists aren't right for you. Exactly. But yeah, it's important to trust your gut instinct. And if you have a thought that it's something else, even if you're wrong, like we were saying before, it's important that you just double check, triple check because you never know. Right.

And it's better the triple check than be sorry. Exactly. Better to be safe for sure.