Episode Transcript
POTS Diary with Autumnizhurr from CA
[00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. Today we are speaking with Autumnizhurr. Thank you so much for joining us today.
[00:00:17] Autumnizhurr: Hello. Thank you so much for having me. Hey everyone. My name is Autumn, or Autumnizhurr. I'm a three time heart surgery patient. I like to call part-time content creator because my content is based off of whether or not my body is happy for the morning.
[00:00:33] Jill Brook: Yeah, so let's start with some basics. Like how old are you and where are you right now?
[00:00:40] Autumnizhurr: I am 28 right now, and I'm currently in beautiful Los Angeles, California.
[00:00:47] Jill Brook: Cool. And when you say you are a content creator, can you talk more about that?
[00:00:52] Autumnizhurr: I am a variety content creator, so I am a competitive gamer. I stream, I sing, I put on shows for people. I have a simulator. my current game I'm addicted to is American Truck Simulator, and I have a racing wheel and everything. But yeah, I create content and I just talk about you know, my heart and most of my content, really, I love it. I put a live heart monitor on all of my live shows so people can see my heart while I'm gaming.
[00:01:23] Jill Brook: Wow. What does your heart do while you're gaming?
[00:01:26] Autumnizhurr: It depends on the situation. If I'm in a competitive tournament, my heart can race really, really high in intense situations like the adrenaline.
So I think the top I recorded on stream was 205. Woo. Yes.
[00:01:42] Jill Brook: What do you get people like sending in messages just like Autumn, take your medicine. Are you okay? Or like,
[00:01:48] Autumnizhurr: Yes. There's been a lot of times, you know, brain fog where I will, you know, get up. I full well take my water and I'll start gaming, and my resting heart rate on stream is 120 and people will send a notification. They're like, autumn, it's time for you to break and take your medicine. I'm like, oh, thank you so much guys.
And then we do a game to see how long it takes before the medicine kicks in, before my resting heart rate goes back to normal.
[00:02:15] Jill Brook: Oh, I bet there's a lot of listeners curious about this. Do you mind telling us like what medicine takes how long for you?
[00:02:23] Autumnizhurr: so it depends on the day, but I currently take metroprolol and Corlanor it's the maximum dose, which is seven and a half milligrams twice a day. And depending on whether I've eaten or not eaten, it can take between 30 minutes to an hour and a half for my medicine to kick in.
[00:02:41] Jill Brook: Oh wow.
[00:02:42] Autumnizhurr: Yeah.
[00:02:44] Jill Brook: Okay. So I am so excited to dig into some of your physical struggles and experiences that you've been through, cuz obviously you've been through a lot. Three heart surgeries is just unthinkable. But can we back up a little bit before that and start with a couple basic things like how would your friends or family describe your personality?
[00:03:06] Autumnizhurr: My gamer buddies would describe me as a ray of sunshine. But that's when I'm not in tournaments, but when I am in tournaments, they would how would they describe me? Very focused and determined is what I think that they would describe me as.
[00:03:24] Jill Brook: And did you have a time in life before your heart started doing weird things or has it always throughout your whole life?
[00:03:32] Autumnizhurr: When I was a child, I do remember my heart racing when I was younger, but I didn't know that there was anything wrong. I thought it was normal, so I never brought it up to anybody. But I used to, before my heart started doing wonky things, I was a full-time student. I was working three jobs.
I actually wanted to become a criminologist. And I was studying to go to school to be a criminologist. And it was a fun, fun time. And then I'm addicted to technology. I'm a certified service and repair technician, so I used to fix like cell phones and iPads and computers and all of that Fun.
[00:04:09] Jill Brook: Wow. That's very cool. Okay, well, so then like, what happened? What kinds of symptoms were you having? What led to all this?
[00:04:17] Autumnizhurr: When I was 18 years old, I went to the doctor cuz I had really, really bad like menstrual cramping and the cramping would be so bad that I would vomit or faint. So I went to the doctor for that. We did blood work and then they found out that I had Very like high platelets.
So then they took me to an oncologist cuz they thought I had cancer. And then the oncologist did my blood work and told me, okay, well then maybe you know, we'll just keep a good eye on you. But it wasn't until like maybe six months into me working at The electronic store cuz it was in sales, so very, very stressful.
I was wearing my Apple that I keep on me at all times. And I couldn't breathe, you know, I was having a hard time breathing and my heart rate was at a hundred and 45 and I thought I was having a panic attack. I went to the hospital and they did the EKG and they gave me water and they sent me home and the next day I was just shopping and I had got a call from the emergency department and they told me that I had Wolff Parkinson White, and I needed to go see a cardiologist immediately. And within 30 days, I had a referral to an electrophysiologist and then, By the time I had seen the electrophysiologist, I was one of the first people to be on the list for an ablation because of the tachycardia that I was experienced from the Wolff Parkinson White, and then they weren't a hundred percent sure if it was W P W or POTS.
[00:05:42] Jill Brook: So can we define a couple terms? What is Wolff Parkinson White?
[00:05:47] Autumnizhurr: So Wolff Parkinson White, it's a heart defect where your heart has extra electricity, and there is a pathway that they call an accessory pathway that causes the rapid heartbeat, the tachycardia, the shortness of breath, and things like that.
[00:06:02] Jill Brook: Okay, and then what is an ablation
[00:06:06] Autumnizhurr: an ablation is a surgery that electrophysiologist use. They'll go through your groin, they cut you through your main artery. They go through your groin, and depending on the type of treatment you get, you either have a hot ablation, which where they burn the inside of your heart.
So that particular muscle doesn't conduct electricity, so they basically deaden, they deaden nerves in your heart to keep the electricity from like bouncing back and forth or they freeze it. But I didn't get the freeze. I got literal heartburn.
[00:06:35] Jill Brook: Oh my goodness. I'm trying to think of what I can say that expresses my emotion, but is not gonna get edited out by the editors and, holy crap, that sounds terrifying.
[00:06:49] Autumnizhurr: Yes, I did suffer from medical P T S D, the sound of like beeping, rhythmic, like beeping. It terrifies me. It's not fun.
[00:06:58] Jill Brook: Well, if you don't wanna go there, I completely understand, but what is it like to get an ablation and know they're gonna do all that stuff to you?
[00:07:08] Autumnizhurr: Well, for me, the first time it wasn't as bad because it was my first time ever having ablation. My electrophysiologist told me that there was 90% chance that this would fix it. I wouldn't need any medications or anything like that, which was true for about six months. And then I moved to a different state, And the tachycardia and the fainting came back.
And so the second time I had my ablation, funny thing is as I was on the table getting my anesthesiology, the surgeon, the electrophysiologist that was gonna do my surgery, actually left right before he was gonna do the surgery and he tagged in another electrophysiologist cuz he had another emergency.
So that was kinda terrifying because I had never met this doctor. This was the first time that I'm meeting him and I'm laying on the operating table, going in and out of consciousness and this new person is gonna operate on me. And then, you know, I thought the surgery was nice, you know, laying down on the lovely hospital bed for four hours because you have to lay there for four hours after the ablation so you don't bleed out.
Cause they cut through your main artery. And yeah, it was great. They sent you home and unfortunately, I lived up to three fights of stairs and I was going up the stairs very, very slowly. As I was going up the stairs, it was about an hour after I had got home discharged from the hospital.
I had went to the restroom and the entire left side of my body went numb. And I didn't know what was going on and I saw in my discharge pager, you know, if I have numbness, come back. So my caregiver rushed me to the ER, they hooked me up to the EKG, blood pressure, and then they noticed that every time I stood up, my, my blood pressure was like two 50 over 110.
So then they did the EKG and it didn't look correct. So then they had to do an emergency echocardiogram, which is a ultrasound of the heart and the technician, bless her heart, she tried her best not to show any emotion, but there was a blood clot that had formed in the left atrial appendage from either the surgery itself or the blood clot dislodging from my leg into my heart.
[00:09:20] Jill Brook: Oh no.
[00:09:22] Autumnizhurr: Yeah.
[00:09:24] Jill Brook: so, so then what? What do they do for that?
[00:09:28] Autumnizhurr: Enter the lovely American healthcare system. My electrophysiologist came in. He was actually on call. He came in just for me. He, you know, explained what had happened. He told me that the surgery had went well, but he wasn't a hundred percent sure what was causing the clotting.
But I also have Sjogren's and I have Other medical issues, that's a blood clotting. But I didn't know I had that at the time. But after, I just remember after them telling me that I had the blood clot, my mind was no longer with me and they actually ordered a MRI of my brain and a CAT scan because I was no longer like mentally present because I never thought that I would have a blood clot in my heart and.
After they did all of those testing, you know, they're coming in every six hours, drawing blood, checking the status of the clot. And then they had to admit me into the hospital and I was there for two weeks and my insurance wouldn't cover the blood thinner that I needed because the blood thinner that they would cover would be way too hard on my system.
So I had to, for eight and a half months, get samples from my heart doctor.
[00:10:37] Jill Brook: Oh
[00:10:38] Autumnizhurr: Yeah.
[00:10:39] Jill Brook: So, did your mental presence just come back on its own?
[00:10:45] Autumnizhurr: My caregiver at the time, my partner in crime, was there for me during that time and I actually, you know, created a YouTube video to help document what was going on. And it was after maybe, A day after I had got that diagnosis, my mental presence came back.
But I realized that who I was was no longer the same, cuz I think it was my, my brain finally processing and breaking down. Cuz I had went from working three jobs. I was in school full-time. Just really taking the break because I had to medically withdraw from school multiple times, and I just kept going.
And in that moment my brain was like, okay, we're done we have no more.
[00:11:31] Jill Brook: Wow. And. Know you're not even talking about some of the stuff you went through, cause I know you still had a third heart surgery.
[00:11:40] Autumnizhurr: Ha. Now that was fun. So after recovery, everything was going good. As it was the magic six month marker. I had started to go to school again. I had started a part-time job, and I'm guessing the stress from that and the elevation of being in Colorado was just too much for me. And that third surgery was I think, the most terrifying because I had anxiety about whether or not this one was gonna work again, if I was going to have a blood clot again.
But with that surgery, I was more of an advocate for myself. I made sure that the hospital kept me overnight because I was prone to the clotting. I made sure to have all of My coping skills and I documented what I was going through in that time and that recovery was a lot better.
But it was six months after that I got into a motor vehicle accident. someone someone hit me and, and crashed my car completely. I was on my way home from a breast cancer stream, so it was just so much going on, and then that's when my POTS came back and then entered COVID.
Yeah.
[00:12:55] Jill Brook: wait, so then what about COVID.
[00:12:57] Autumnizhurr: Okay, I totally forgot about something. Going back to my third surgery. It was an attempted ablation because when the electrophysiologist went into test because they have to test to make sure the that the deadening will work. He said that the extra pathway was too close to my AV node, which is your natural pathway.
And he said that when he went to try to ablate it, my heart stopped. So she wasn't comfortable with performing that ablation because there was a 10 to 15% chance that I could end up with a pacemaker. And because we did not discuss that type of thing at all, there was no surgery.
My third ablation, nothing had happened, so they put me on Colonor and metoprolol to help with the pacing and everything was fine. But then once the motor vehicle accident happened, it also gave me asthma. So the medicines that I was taking for my inhalers that I was taking for my asthma had made the heart medicine not as effective.
[00:14:00] Jill Brook: Oh.
[00:14:02] Autumnizhurr: Yeah.
[00:14:02] Jill Brook: So, okay. Do I have this correct that you had a first ablation that sort of worked for a while, you had a second ablation that gave you a blood clot and then stopped working, and then you had a third attempt at an ablation where they could not actually do it because it was too close to your natural node and might require you to get a pacemaker?
[00:14:28] Autumnizhurr: Yes, that is correct.
[00:14:31] Jill Brook: how do you keep a smile on your face?
[00:14:34] Autumnizhurr: To be honest, I find it hilarious because I have so many like disabilities and long list of medical things that I'm like a medical anomaly and I love shocking doctors. It's just funny cuz I think I'm happy because doctors are still so confused about what's going on and I was like, all, let's switch your medical degree to work...
[00:14:56] Jill Brook: Wow, you are a ray of sunshine. That's so awesome. Okay, so you had said that the third surgery was a little bit easier because you brought all your coping skills. Do you have any coping skills that you can share and...
[00:15:08] Autumnizhurr: yes absolutely. I brought my headphones listening to music. I had made sure to have my phone full of pictures of my lovely cats. I brought my computer for gaming and streaming.
[00:15:20] Jill Brook: Mm-hmm.
[00:15:21] Autumnizhurr: and I brought my and I brought my laptop, not my laptop. I brought my iPad with me to record my experience and I posted it on YouTube and my coping skill was knowing that other people were going through the same things or they were having the same symptoms, and I helped them get the care that they need.
[00:15:40] Jill Brook: Wow. Good for you. That's amazing. What a positive way to do all of that. Okay, so what does a day look like for you now? What's an average day?
[00:15:52] Autumnizhurr: Oh man, it depends on the temperature outside or the weather, to be honest. Like yesterday was really, really cloudy, so I stayed in the bed most of the day because of the inflammation that I had and my heart was racing and I knew that if I did anything, I would faint. So, I stayed home.
I mean I stay home all the time. But today was better because it actually started to rain. So the pressure was relieved. So I am, right now, currently in my stream room. I was able to play about three hours of Fortnite cuz I'm practicing for an upcoming tournament. So I was able to get some practice in today.
I was able to take my medicine without brain fog, things like that. I was lucky enough that my body allowed me to be here today, so I'm so happy. I'm so happy, but I try to limit myself to like five spoons a day.
And spoons a terminology that's lovely disabled people used to express how much energy we have. And I try to do little spoons. I try not to have one big spoon for anything because if I do have one big spoon for something, I don't schedule anything else. And then I go to the doctors about once a week too. So no day is really typical for Autumnizhurr.
[00:17:08] Jill Brook: What qualifies as a big spoon for you, where if you do that thing, that's it for the day.
[00:17:13] Autumnizhurr: Most definitely if I have a pre obligation like if somebody writes me to a group project for streaming where I have to get ready, get my makeup, and get my wigs, get everything ready for the content creation, cuz that takes about an hour and that just drains all of my energy. Having to go to the store for any reason.
Basically having to leave the house because my current house has stairs in it. Hey, I don't go out too often.
[00:17:40] Jill Brook: Mm-hmm.
[00:17:40] Autumnizhurr: Yeah. I try to designate those, I try to keep those days, just have nothing planned for that. Like today I'm going to the store, so I have this planned and nothing else.
[00:17:51] Jill Brook: Mm-hmm. How does your heart do with stairs now?
[00:17:54] Autumnizhurr: Oh. No, it's not good. I can walk down the stairs one step at a time, extremely slow if it's not too hot or if it's not too cloudy. If it is, I have to sit down on the stairs and sit on my butt and scoot down or walking up the stairs. I try to go up reverse on my butt as well. But there's times where I'll just won't go up the stairs because I can't make it, and I look at my heart rate because if my resting heart rate is over a hundred, I know I'm not gonna make it up the stairs.
[00:18:25] Jill Brook: Did you have times where it was hard to stay positive? Like you seem so positive right now, even though things are objectively like not close to normal, right. Did you have to work to get here?
[00:18:37] Autumnizhurr: Yes, I'm working, I'm going on year five of everything that's going on. I've been fighting with disability as well. I've been denied three times. Went to court and everything. Have a disability lawyer and that's not fun. And I think after my second surgery where I had the blood clot.
My mental health was fading a lot because every day I wasn't sure if they would let me go home because of something that happened. I was 22 or 23, so I was a baby and you know, I had to drop outta college for the third time.
I honestly felt that I wouldn't be able to do anything with my life that my physical body was giving up. And I was like, what is it that I do? And then, you know, when the pandemic happened I was like, okay, well now I am at risk because of my heart and my immune system. I was like, okay, well then I will just stay home forever.
I had a really bad agoraphobia. That was during the time when there was a lot of mass shootings. I was just confined and I didn't wanna be around anybody. because The trigger for my bipolar depression was the blood clot. And I think I spent most of my years in the depressive state because it just seemed like every time I went to the doctor something was going wrong.
[00:19:56] Jill Brook: Yeah. So how did you get from that state to now a ray of sunshine?
[00:20:02] Autumnizhurr: Gaming content creation. So I had started my content creation cuz I've always like put stuff on YouTube and stuff when I was younger. I started live streaming like I tried in April of 2019 and then my heart started giving out. So I was only able to stream once and then I tried again in May.
Heart gave out and then the heart surgery in June. And then after my car accident, I had lost like a lot of physical mobility cuz I couldn't go anywhere and I became isolated. So me streaming and my followers, I love you guys are my biggest supporters because I started streaming at a time where it was new for me, my life was new, so my online presence is this, Autumnizhurr now, not Autumn is then. And, and I was able to find communities through gaming and eSports for people who were like me. And they kept me positive. I was able to find resources of how to deal with these type of stresses. I got a lot of donations from my communities to help me during the hard times. So it's my gaming community. It's my, it's my eSports community. It's, it's most definitely them.
[00:21:14] Jill Brook: That is so cool, and how, how smart to find a way that you could get a community from your own home.
[00:21:21] Autumnizhurr: Exactly. I don't have to leave my home. I am a tech nerd. And I was like, okay. Well, especially once the pandemic happened and everybody's confined to their houses anyway, I was like, okay, well, you know, and I did a lot of lot of research before starting it, and I found out that you can make money, but I did not know it was gonna take this. I'm going on into my fourth year. I'm going on into my fourth year, but I'm gonna shout out my, my stream team, Black Girl Gamers. They recognize me for who I am and my work. And so I'm able to be a hundred percent my talk about my disabilities and everything. I was able to find my first paid job really since becoming so disabled and it took two years. But I'm eternally grateful for them. I love them so much. Thank you.
[00:22:04] Jill Brook: Oh, that's awesome. So, okay, so you're a content creator. What makes good content?
[00:22:11] Autumnizhurr: It depends on the person for me. It's all about the experience. It doesn't matter what game I'm playing, it doesn't matter whether I have my camera on or camera off.
I want you to have a good time. I have overlays, I have interactions. I have jump scares depending on the certain type of content that I do, depends on the platform that you do. Cuz if I'm on Instagram, that's like my singing, that's my disabilities, that's me showcasing the reality of everything.
And then when I'm streaming, or I'm gaming, that's more of the fun. We're here for entertainment. We're here to decompress. We're not worried about the outside world. We're here to be entertained and live entertainment is crazy because no stream is the same because you have different people that you interact with. It's crazy. I love it though.
[00:23:07] Jill Brook: It sounds like it. What's interesting to me is that you had mentioned that, for example, working in sales was stressful, or working a part-time job was stressful, but being a live entertainer to thousands of people is not stressful to you.
[00:23:21] Autumnizhurr: it is. It is. So I am subject to trolls because I'm a black woman and I'm disabled. So a lot of people try to pick you down about that. But I think I found a humor in that because of my surgeries in the car accident. I was like, listen, there's nothing you can say to me that will make me do anything because I have lived through much, I've lived through anything.
Okay, so. It's that. It's making people laugh. It's giving people emotions. People love my personality. I guess. They're here for it's story. And I love to tell stories. I love to hear stories. I speak three different languages, so I can hear as many stories as possible.
[00:23:59] Jill Brook: Very cool. What languages do you speak?
[00:24:02] Autumnizhurr: English, Spanish, and Japanese.
[00:24:04] Jill Brook: Wow. Yeah. I love your personality. You're amazing. You're amazing. Tell me about what you know now that you wish you had known sooner.
[00:24:14] Autumnizhurr: I wish the doctors would've told me how common my heart condition was because the way that they explained it to me because it just felt like only specialists knew about it when it should be well known, like POTS and WPW because it made me feel isolated. So I wish I knew that there was way more people who were also conquering the same illnesses as me, because then I wouldn't have felt so isolated.
[00:24:42] Jill Brook: Mm-hmm. What do you think of our healthcare system?
[00:24:45] Autumnizhurr: I know you're joking. Okay. So as soon as I turned 18, I realized the healthcare system was a sham. At 10 or 11, I tore my ACL, but I didn't know that. So I was walking on a bum knee for a long time.
So at 18 years old, I was still on my father's insurance and I had a knee surgery, but his insurance had me down as the wrong sex type. So I went into medical debt because my insurance didn't wanna cover it at 18 years old. And then, nobody really believes you when you're young about your pain levels.
You always have to feel like you have to show proof. And getting a second opinion is very difficult. The waiting times for getting your healthcare is really what makes people sick. Because I've had healthcare in California, Arizona, and in Colorado.
And I realized that our healthcare system is meant to keep disabled people in poverty because I am on a many four-tier drugs. Drugs. And that's the highest tier. Basic. There's no generic for that type of drug. While I was working, one of the reasons why I had to leave was because the insurance that I needed to go to. I visit the doctor way more than six times a year. I go to the doctor four times a month, so I had to pick the highest insurance plan that they had, which was $750 a month that I had to pay. Mind you, I was only making $1,200 a month working there, so it would've been $700 a month to get their insurance. They did not cover tier four drugs, and there was a $4,000 deductible every year.
So I had to leave the job because if I didn't, I was gonna be working for insurance. And so I was like, okay, well that wasn't work. So I had to keep myself basically in poverty. I can't make more than $1,200 or I can't get the government insurance, which is the Medicaid that covers all of those drugs.
Um, and I've had it in every single state that I have moved to. The waiting period, because unfortunately, when you move a different state, you have to be a resident of the state before you can even get the coverage. So every time I move, it takes a year for me to get the healthcare that I need.
Because you have to become a resident and then it takes an additional 45 to 90 days for you to get approved. So it's either I drive to the old doctors I was going to, cuz that's what happened when I moved to California. It took a year for me to get the insurance and I was driving to Arizona to go to my doctor's appointments to get my medicines because I couldn't afford it anywhere else.
[00:27:22] Jill Brook: Oh.
[00:27:23] Autumnizhurr: I've currently been in California for I think a year and a half, and I'm just now getting all my referrals that I need for specialists because I have to go to my heart specialist first, and I can't go to any other specialist until I see my heart doctor first and the, the waiting and everything is.
It's not fun. And the system for disability is unfair. They do not believe young people. I've been fighting for disability since October, 2019, I think. I should have applied for disability after my second heart surgery. But I was making way too much money to even be considered, quote unquote disabled.
Because if you make more than $1,200 a month, you are not considered disabled in the eye of the government.
[00:28:05] Jill Brook: Wow. That is so frustrating. I mean, and I don't even know how, you just don't even like rip out all your hair thinking about it.
[00:28:15] Autumnizhurr: I did have to cut off my hair. I did because I couldn't keep up with it. I was like, no, we're just gonna keep it short because I can't, it's, I'm stressed. I'm stressed out.
[00:28:25] Jill Brook: So I understand, I think, why gaming would have appeal that it, it is a very, you know, sticky to the brain, that it's almost like do you think you like gaming because it makes it easy to forget all these frustrating things for a while?
[00:28:41] Autumnizhurr: To be honest, I think my main thing about gaming is it's an equal playing field, if that makes sense.
Because gaming now is so much more accessible. There are so many different controllers and stuff that can be used to help you game. And then also when I'm gaming, I'm in control of my own reality. I can do what other abled body people can do. When I'm driving on my simulator, when I'm doing my truck driving, I'm able to drive a bus because I can't drive, but I'm able to do that in the game because it's so realistic. When I'm doing my virtual reality and I'm skiing and I'm snowboarding, I'm immersed in that and I'm able to have these experiences in this virtual world.
Without my physical, there's no limit. There it is. There's no limitations when it comes to gaming. Anybody can game and it doesn't matter what you do, what you play. You are a gamer. You can make your characters, you can be somebody else. It's amazing. You play with others. You're not by yourself. You're not isolated when you game. That's for sure.
[00:29:51] Jill Brook: Yeah. Yeah. It was just so true when I'm thinking we have to get you a a sponsor because I the best advertisement for gaming that I have ever heard in my whole life. Yeah.
[00:30:02] Autumnizhurr: please.
[00:30:04] Jill Brook: Yeah.
[00:30:04] Autumnizhurr: And then also, that was the other thing too. The other thing about streaming that I forgot to mention is the amount of charity work that is out there while I stream. I have been able to do panels for trans life, for black women in the gaming communities. I've been able to show a lot of representation for multiple marginalized communities.
I've been able to raise money for the American heart association, you know, St. Jude. I do this because I know the struggle it is to be a disabled person just in general, and being able to do that as a gamer is awesome. And anybody who doesn't sponsor gamers terrible because gaming is the future. It is.
[00:30:48] Jill Brook: That is awesome. That is so awesome. Could we do a speed round where we ask you to just say the first thing that comes to your mind?
[00:30:56] Autumnizhurr: Yes, I'm ready. Love it. It's a game.
[00:30:59] Jill Brook: right? If you do extra salt for POTS, what's your favorite way to get salt?
[00:31:03] Autumnizhurr: Ooh, pretzels.
[00:31:05] Jill Brook: What is the drink you find the most hydrating?
[00:31:08] Autumnizhurr: Pedialyte.
[00:31:09] Jill Brook: What is your favorite time of the day and why?
[00:31:13] Autumnizhurr: Nighttime, no sun.
[00:31:15] Jill Brook: Where is your happy place?
[00:31:18] Autumnizhurr: My happy place is an American truck driving simulator.
[00:31:24] Jill Brook: Oh, nice. Nice. How many doctors have you seen for POTS or related issues?
[00:31:30] Autumnizhurr: Today or this year or total?
[00:31:33] Jill Brook: Total.
[00:31:33] Autumnizhurr: I can say it has been at least over 15.
[00:31:37] Jill Brook: What is one word that describes what it's like living with a chronic illness?
[00:31:43] Autumnizhurr: Exhausting.
[00:31:44] Jill Brook: What is some good advice anyone ever gave you about anything?
[00:31:49] Autumnizhurr: Don't overwork yourself and make sure to set boundaries to protect yourself.
[00:31:55] Jill Brook: What is something small or inexpensive that brings you comfort or joy?
[00:32:00] Autumnizhurr: My heart monitor.
[00:32:02] Jill Brook: Who is somebody you admire?
[00:32:04] Autumnizhurr: I admire, I admire my Black girl Gamers team.
[00:32:09] Jill Brook: Do you wanna say why?
[00:32:11] Autumnizhurr: Yes. Because, Being a black girl in general is difficult. Just being part of a marginalized group is difficult, and we put ourselves out there every day to face the trolls, and we don't let the negativity stop us from being unapologetically ourselves.
[00:32:28] Jill Brook: Oh, that's awesome. What is the toughest thing about POTS?
[00:32:33] Autumnizhurr: Standing, I'm sorry, but it's, it's so hard to stand.
[00:32:38] Jill Brook: I'm with you. I actually brushed my teeth at 3:00 PM today, and I'm like, I'm not eating dinner because I'm not brushing my teeth again.
[00:32:46] Autumnizhurr: Oh man. Standing for sure.
[00:32:49] Jill Brook: What is something that you're proud of?
[00:32:51] Autumnizhurr: I am proud of my perseverance and my strength.
[00:32:59] Jill Brook: Mm-hmm. Do you have anything that helps you fall asleep?
[00:33:02] Autumnizhurr: Yes, listening to rain sounds and my cat when he purs next to me.
[00:33:07] Jill Brook: Do you have anything that helps give you energy when you need it?
[00:33:11] Autumnizhurr: I know I'm not supposed to have it, but coffee. But I drink coffee with a protein shake and it's the dark roast, so it has the least amount of caffeine. I know that.
[00:33:25] Jill Brook: That's great. I can tell it was very thoughtfully planned out.
[00:33:29] Autumnizhurr: Yes.
[00:33:30] Jill Brook: What is a gift that you would have sent to every POTS patient on the planet if you had infinite funds?
[00:33:37] Autumnizhurr: an Apple watch or some type of heart monitor. Something that they can wear to monitor their heart. Yeah.
[00:33:44] Jill Brook: What is something you're grateful for?
[00:33:47] Autumnizhurr: I am grateful for my community. I am, I'm so grateful for them. They keep me going, for sure.
[00:33:55] Jill Brook: Can you finish these sentences? I love it when...
[00:33:59] Autumnizhurr: I love it when it rains.
[00:34:01] Jill Brook: Hmm. I hate it when...
[00:34:02] Autumnizhurr: when it, when it's cloudy and it's not raining.
[00:34:05] Jill Brook: people might suspect I'm a POTSie when...
[00:34:09] Autumnizhurr: I check the temperature before going outside.
[00:34:14] Jill Brook: Mm-hmm. Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was it?
[00:34:22] Autumnizhurr: I actually had to lay down in the middle of getting my appointment for my cardiologist because I had ran out of my medicine and I fainted trying to make an appointment and I had to lay down in front of the check-in desk. Yeah, but they had salt and Gatorade on hand. No, obviously.
[00:34:44] Jill Brook: That's not the worst place.
Um, I just have a couple more questions. What do you wish more people knew about POTS?
[00:34:54] Autumnizhurr: I wish they knew that it's not just a heart problem. It is a full body problem. It affects the brain, the everything. It had brain fog just, but it is a full body experience to have POTS.
[00:35:11] Jill Brook: And is there anything you'd like to say to your fellow POTS patients out there who might be listening?
[00:35:17] Autumnizhurr: drink lots of water. Always advocate for yourself and try if you can, to learn about your ability. And if you need help, go to YouTube. Look up Autumnizhurr and I have videos to help you because you matter. What you're going through matters. And just because someone may not see it, it doesn't mean that it's not happening. Cuz I believe you.
[00:35:47] Jill Brook: That's great. So yeah, tell everybody one more time where they can find you online for your gaming or your other content or whatever.
[00:35:55] Autumnizhurr: on all of my social media, literally everything, Twitch, Facebook, YouTube, Twitter, Instagram, any social it is Autumnizhurr. And that's a U T U M N I Z H u r R. And you can find any content from me, from what it's like being a POTSie, having multiple chronic illnesses, me going to gaming conventions, my hospital visits live streams, past streams, and many more, and singing too.
[00:36:29] Jill Brook: That's so cool. Autumnizhurr, thank you for sharing your story and your beautiful attitude and sense of humor and insights with us. Your strength is awesome. We really appreciate it and I know that everybody listening is wishing you all the best going forward.
[00:36:48] Autumnizhurr: Thank you so much. I am so happy that I was able to be here and tell my story because I'm here to tell my story and I'm happy for that. I'm truly grateful.
[00:36:59] Jill Brook: Right on. Hey, listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.
