Episode 1: Let 'er Rip
Hello, and welcome to the first episode of BrainFart! I'm Maddi Albregts, and here we go.
Honestly, this is my first podcast, and I just kind of wanted an outlet to talk about these illnesses that I'm facing and how it affects me, and just hearing if it affects other people - I feel like I'm constantly telling these stories to my family members and friends and each time I'm telling them about new medical issues, it just... It sounds crazier and crazier. So I figured what better way to destroy the crazy than tell everyone on the internet about it. Plus, it will save some breath because maybe some of my family and friends will listen to this and I won't have to describe every illness I ever have again.
Basically it all started with my neurological condition, which is kind of what this podcast is based off of - “BrainFart,” meaning that I forget so much. One of the fun... fun little...
I already forgot what I was saying.
...One of the fun little symptoms of my brain disorder - and speaking of that, it's called Pseudotumor Cerebri or Idiopathic Intracranial Hypertension. Basically it’s just a build-up of cerebral spinal fluid in your brain; like your fluid runs up and down your spine. I'm doing a hand motion now, but nobody can see it because audio platform. So essentially, my spinal fluid doesn't flow out of my head properly, the fluid gets stuck in my brain, it's called “pseudotumor” because it's basically just like a wannabe tumor, like a fake tumor. And people are like, “Oh!” they hear ‘tumor,’ they're like, “Woah, that's like, wow, wow, you have a mass in your head” and I’m like, “No, no, it's fake. It can't even be a real tumor, it's just fluid on my brain.” But it causes all of the symptoms of a tumor, and actually it got its name (fun little history fact), because back in the day, people would be dying of these similar symptoms and when they would open them up for an autopsy (because like medicine didn't exist), they would see these growth in their head and that was what the tumor was, and then people with pseudotumor were dying of the same things, and when they would open them up, nothing would be there, so they basically called it just this fake tumor, so hence the name ‘Pseudotumor!”
I started getting symptoms to it when I was about 19, which doesn't fit the profile for Pseudotumor or Idiopathic Intracranial Hypertension. Because it says - if you Google it, go on that good old Wikipedia, WikiHealth - it basically is common in women, 40 and older who are obese, or women who have taken this certain kind of birth control. And I had never taken birth control, I'm a fairly average weight person, and I was 19, so all of those were crossed out. Everyone was very surprised that that was the result. And also, you know what, whatever, just because some people and some women of that specific size or age tended to get it a little more, that is total BS because I did a lot of research and there were a lot of people, random people getting this. And basically it's called “idiopathic” because they have no idea where it comes from. So I feel like you can't put a label on that because nobody actually really knows.
Okay, so back to the actual storytelling portion of this. So basically, I was diagnosed with that when I was 19, it caused a shit-show in my body... As my grandma would say, “Excuse my French.” So it was really difficult to deal with. I was losing my eyesight, I was losing my bodily function, I was in college - I go to college for musical theater, so it's very much body-involved, voice-involved, eyesight-involved - and so basically I was dealing with this thing tearing part of my body, when I relied heavily on my body to do my profession, to do what I wanted to do with my life and my career. And so that was kind of a smack in the face, realizing that I was losing something I love so much. And it's so hard to explain to people why I can't get out of bed, and why I forget things so easily, and why I'm frustrated because I can't think of the words that I wanna say because they're just blank in my mind, and so communication seemed impossible, and getting out of bed seemed impossible, and I was couch-ridden. And people just don't understand that. They look at you and they're like, “What are you talking about? You're like 19, you’re 20. How is this happening to you? You look pretty healthy, well you look a little peaked,” (but I'm pale anyways, so that's no surprise). And they’re like “You don't look sick,” and it's so hard to tell someone that it's all inside my head, not “all inside my head,” but literally the fluid is all just sitting inside my head, and so you can't do these things and it's like frustrating. You get so mad at your body for not doing what it's supposed to be doing. And I mean, anyone can relate to this, anyone with chronic illnesses or just any illness or any disability, it's like this frustrating thing, especially when it comes on later in life or suddenly - it came on very suddenly for me where I was like, “How do I cope with this? Is this the rest of my life?”
And so that was kind of the first issue to present itself - and I had always had some medical issues growing up, I was always a little sick more often than other people, I always had digestion issues - just little things that I never quite really looked into, I just kind of let slide, but this was the first severely medical issue I've ever had. I was hospitalized for many days, nobody quite knew what it was, a lot of people thought it was epilepsy because I was having seizure-like symptoms, it was kind of just this party of people trying to figure out what was wrong with me and trying to do it quickly, because I started deteriorating so quickly. I mean, I woke up one day and it was like I was hung over, and then all of a sudden that night I was seizing in a stairwell, it just went from zero to 10 so quickly. I mean, if my body is gonna commit, it commits full-heartedly. Which I am quickly realizing, as the past few years, I've learned many, many more issues that I have with my body.
So that's basically the Pseudotumor part of it. And I will dig into the night of, how it really happened, what people found out, how they found it out, all of that good juicy stuff. I might bring in some people to tell me and fill in the blanks because I don't remember much of that night, and boy, do they remember because apparently it was very scarring. So that's kind of that whole area, and that's kind of what inspired me to do this and to talk about it because it's not something you really hear about everyday. It's not really a disease you think about quite often, and I did a lot of research, I went online, I looked for YouTube videos and I looked for... God, I looked at everything, I looked for articles. And the thing is looking at articles is great online because you're getting solid scientific information, but the problem is, I wanted first-hand accounts. I wanted to see how other people were dealing with it, and I just wasn't finding a lot. And - I'm lucky. Reading some accounts I found, I realized that I am lucky in what I got, if that makes sense? Which is also such a stupid thing that I have to preface this and say that, “Oh, mine isn't as bad as it could be,” which is incredible, but you shouldn't be making excuses for your illnesses, it just is what it is, and that's your life and pain is relative, man. People are always gonna have these issues, and it's gonna be how you deal with it. And so don't belittle your pain... That's something I'm working on, is not belittling my diseases or my illnesses because I know someone else has it worse, but also just accepting the fact that it's there and that it's affecting my life and that it's valid. Honestly, it's just... It's valid. What I feel is valid. What you feel is valid... We're all valid. Okay, glad that's clear.
But yeah, so that was the IIH. And then after that, it took a long time to get back to a better place. I'll talk about that too. My recovery, things like that. I just kinda wanna give an overview of all of the things, and then I can spend actual episodes going in-depth about them and bringing in other people. I wanna do a lot, I wanna bring in friends, I wanna bring in my boyfriend, I wanna talk to people about just what it's like and how they deal with it and what their experience with it is, because as much as it is my experience, they get a lot of residual effects from it. They're around me a lot. They see me a lot. I'm lucky to have friends, and so they're gonna be able to give their account of the story, and just kind of talking about how it affects me and knowing that it is affecting them and the guilt I have, and the paranoia that comes with it, but... This is all just me getting my thoughts together and deciding what I wanna do for future episodes, I think I'll have plenty to talk about as you can already tell.
But back to kind of the medical timeline, I was 19 when I had the Pseudotumor. And it was okay, and I was on these horrible, horrible diuretics, just like 1000 milligrams a day, just tearing apart my body, couldn't feel my hands and legs - which does not bode well if you wanna be a dancer - losing my eyesight, - which also doesn't bode well if you wanna be a performer who hasn't grown up like that. I know there's plenty of blind performers, but I was not quite used to it, and I knew that it would take a while to get used to it again. So it was just a little freaky, just a little scary for me.
But so I was doing that, and I finally found a treatment involving neuromuscular movement retraining, and I finally felt like I was getting back on track. I was like, “This is it, this is where I'm going. This is okay.” And then things just kept falling apart, it was just thing after thing, and before the pseudotumor, like I said, I'd had some issues growing up and then I found out I think when I was 18, I found out I had hypothyroidism, which means your thyroid isn’t producing enough hormones to balance out the rest of your body, which kind of runs in my family, and my mother has Hashimoto’s disease, which is the worse autoimmune version of hypothyroidism.
And then I also found out I had PCOS, Polycystic Ovarian Syndrome, which is kind of a hormonal disease that most women can get - it's a common disease, not to belittle it in any way, but it's less rare than the other diseases I have - and so it was kind of dealing with those as well, but I had had those pretty much under control before the Pseudotumor, so those weren't greatly impacted because I had already figured out what to do and how that affected my body. So we were kind of in the clear.
But after the Pseudotumor, it just… It just sucked. I don't know how else to say it, I just didn't know what was quite wrong with my body, and then any time anything happened, doctors would just throw the symptoms into the Pseudotumor bucket, they were just like, “Oh, you feel tired? Pseudotumor. You feel this? Pseudotumor, of course, of course it's that. What else would it be? That thing is trashy. Like, that's what it's gotta be.” And more recently, finding out that that's not it - I was still having eyes issues. I would go to eye doctors and they would say that the fluid wasn't building up on my optic nerve (because that happens with the Idiopathic Intracranial Hypertension), but I was not able to move my eyes to the sides without my eyelids fluttering, and they told me that that was Sixth Nerve Palsy and that I was starting to lose movement in my eyes. No one wants to hear that. And so that was happening, and I was like, “Okay, how is this still happening if I don't have the fluid, what else is going on? Why do I still feel so tired?” I literally, some nights just in bed crying because I was so tired, and then I'm thinking, “Am I overreacting? Do I just need a nap? Like what is going on? I'm so exhausted.” And so then it was back to doctors, and it was back to doctors and hospitals, and holistic, and acupuncture, and literally doing everything in the book to try and figure it out.
And finally I went to a doctor and she was like… “It sounds like you have Lyme disease,” and I was like, “Lyme disease?!” I grew up in Las Vegas. There's not a myriad of ticks there. There's not deer there, and that's where ticks come from, right? And then I realized I was still an outdoorsy person, I realized I go to school in freaking New Jersey where deer are abundant, and that I had been to Wisconsin many times, and I was like, “Okay, this isn't completely out of the question,” and just because I didn't find a tick bite doesn't mean that I don't have Lyme disease. And so she's telling me this, and then she also mentioned, “Oh, by the way, you have chronic EBV,” which is Epstein-Barr Virus, which is, yes, Mono. Like that stupid ‘kissing disease’ that you get when you're in fifth grade and they're like, “Don't share cooties!” Like cooties is Mono. Like that is what Mono is. And apparently, it's just been living inside of me forever because… why not? 'Cause my body is just breeding ground for diseases that are just weird... Just weird diseases. So I'm finding out that I have Lyme and that I have like EBV, and I'm like, “Okay, so of course, I'm feeling tired. Of course, this is why.” And then I'm like, “Maybe that's what's been up with my digestion!” Nope! You know it was up with my digestion? The two tapeworms, the three parasites, the bacteria, and the fungus that were all living happily inside my small intestine, and my stomach, and even getting close to my appendix.
Yeah. What do you even say to that? I'm sorry if you're like, “Oh my God, this girl's disgusting. I can't even listen to her,” because it's like “What?!” What do you do when you find out you have worms living inside your stomach? So that one kind of put me over the edge just slightly. Although I have to say, the incredible thing about those worms is that I can kill those suckers and I can poop those suckers out, and they're gone. What a beautiful thing it is. That should be the least of my worries. As much as that's probably the most disgusting thing that I have, it's also probably the easiest to evacuate from my system. And so it's just one of those things where you're constantly being told that you are sick - going from a time where I didn't know what was wrong at all, to all of a sudden having all of this information about myself was overwhelming, it just was truly. And maybe that's why I'm doing this podcast, maybe this is literally just a coping mechanism. But it was overwhelming to hear all of these weird things about myself and to realize that this was happening to me, and that it is also happening to a lot of other people. And I mean, my family is not crazy healthy in regards to illnesses, but we also were very lucky in regards to that - like my brother has two autoimmune diseases; he was diagnosed with Celiac when he was five, and Type 1 Diabetes when he was 13; And my mother has Hashimoto’s disease, which is an attack on the thyroid, and she was diagnosed in I think her 50s, (she's still in her 50s, she's a very young spunky lady, but still), it was fairly recent. And so we don't have the cleanest track record, but they’re also all things that we can live with, but it just makes living a little less convenient. Just a slight inconvenience to the whole thing. I mean, my dad's fine. He's plugging along. He's doing his thing. I always joked with my parents that I don't think their DNA matched well together. Me and my brother, I think we're great people, we’re pretty okay, we've done well for ourselves, but our health just... Not picture perfect. Which is fine, and I think that's what I'm ultimately trying to say here, is that having these things doesn't make me less of a person. It changes the way I am a person, it changes the way that people may perceive me as a person, but it doesn't change that I am also a human being trying to do my best.
And sometimes it's a little hard to do my best because it takes a little more effort, it feels like people don't quite understand, they don't really see - no one seeing the worms, no one seeing the fluid build up in my brain, no one seeing the scar tissue on my eyes, no one seeing my hormones not working properly, or my enlarged underactive thyroid, like no one sees that! They just see me, and they just see that if I'm not quite on for the day, then something's really off. And I mean, I’m a pretty go-getter gal, I have always been comedic and wanting to be out there and talking to people, and I'm always making a fool of myself and being a little disgusting at some points - I mean I talked about my poop earlier, I'm sorry, but if that grosses you out, this might not be the podcast for you, because I mean… I mean I'm not gonna get disgusting, okay, but I also have a free tongue. But yeah, they just see that, “Oh, Maddi’s not cracking as many jokes today,” or “Oh, she's not doing that,” or “Oh, she skipped class again, why? She skips all the time,” and I'm like, “I skip because I had an episode last night and I couldn't get out of bed this morning.” And I'll talk to you all about those episodes, but mainly for this kind of introductory episode, I just wanted to give kind of some background on me.
Okay, you know what, here's some actual background on me. Like that was my health history, that is not my history. I'm 21, I'm in college. This is my last semester. I grew up in Las Vegas. I'm in New Jersey, I'm moving to New York. I hope I'm not going away too much information. I study musical theater, I have a minor in Business and a minor in German. I really like to watercolor. I love reading. I have incredible parents, I have incredible friends, I have an incredible boyfriend. There's wonderful people in my life. I love singing and dancing. I love to rock climb, I love nature. There's a lot to me, other than the health, I just think the health is really funny, and there's so many ridiculous things that are currently going on in my body that I felt the need to share with a bunch of random strangers. And I thought that it might be helpful just to talk it out, for me, and for you to hear someone talk about it, and maybe you can get some more information about these random things, and maybe you can relate and you understand what it's like to have invisible illnesses and chronic illnesses, and know that it's something you're gonna have to deal with for the rest of your life, and just coping with that and coming to terms, and just going about it in the best way that you possibly can. And honestly, that is why I'm doing this, and I know it sounds so ridiculous. And I know that I am in the early stages of my life, but I would just love to know more. I would love to get my story out there, and if it helps someone, that would be awesome, and if that someone is me, that's even better.
So thank you for listening to the first episode. I look forward to talking to you more. I hope you'll tune in for the next episode. Have a good night, or a good day, or whatever it is, where you are.