Episode 5: Cutting the Cheeses on these Diseases
Hello everyone, and welcome to the 5th? 5th episode of BrainFart. You know what, I'm not even gonna lie. This is my second take of recording this.
I recorded it yesterday and then I listened back to it, and it honestly sounded like I was being held hostage and forced to talk about this podcast. I have no idea why. I felt very good, I felt fine. I was having a productive day, but listening back, it just was not cute. It did not sound fun, did not sound soothing, did not sound like I was enjoying myself whatsoever. Disclaimer: I am enjoying myself, I really like doing these. I feel really lucky that I get to do them. No matter how many people listen to them, I am having a good time, so thanks for coming back and listening. I hope you guys enjoyed last week, I found it very fun! I got to talk to one of my closest friends and we had a ball. I really like having interviews... I like an interview podcast is what I'm saying, so it was really nice to have someone else to kind of talk through things with and just kind of bounce off each other, that was really nice, so I think that's something I'm gonna continue doing in the future.
I mean I always would love to hear your input if you guys have any ideas, just email at firstname.lastname@example.org, or I have an Instagram page now called BrainFart Podcast, and you can follow and slide into my DMs if you so choose. I think that's all the business. I don't even know if you can really call that business, it wasn't much, but that's all of that business stuff for this episode. So let's just dive right in. This week is gonna be a little more informative- I guess you could say. I think I'm gonna dive in to some of my other diseases this week. We've heard a lot about the Pseudotumor. We got a lot of background on the Pseudotumor, so I wanted to bring up my other things. So today, I wanna talk about Lyme disease, hypothyroidism, and chronic EBV, which is Epstein-Barr virus, which I will explain when I get to it.
So I guess here: this is the reason I wanted to do all of the Pseudotumor stuff first and then talk about this, because the thing is a lot of these illnesses have really similar symptoms. In the beginning, I was going to see my doctors or any time I had symptoms, I would always just dump it in the Pseudotumor bucket. I was like, "Oh, I'm feeling tired," Pseudotumor. "Oh, I'm achy," Pseudotumor. "Oh, I feel cold," Pseudotumor. I don't know if that's a legit thing, but for the most part, I would just put it all into the Pseudotumor bucket. That is what my doctor said when I went to see her this past winter break, which is just what I do- winter break= everybody is partying, having fun. I go to all my doctors because- like a dingus- I have all of my doctors back in Las Vegas and they're great, I love my doctors back in Vegas, I love my team, which is probably why I haven't searched out doctors in New Jersey…which is not the greatest plan. I plan on staying here, so I should probably invest some time in finding people that I really like and trust here as much as the people I like and trust in Las Vegas.
So I went back, whatever. That's beside the point. That's my own personal agenda. But I went back for this past winter break (so recent) and I went in and I was talking to her and she was actually... This one was newer because my old doctor moved to New Zealand or something, just my luck. And so I had to switch to the other woman in the practice, yadda, yadda, lots of history. So I went in and I'm telling her about all of my Pseudotumor stuff, and I'm talking to her and she's like, "Okay, well, what are your symptoms now?" And I was telling her and telling her how I felt like I had the Pseudotumor under control, but I was still having these symptoms and all this, skedoodlebob, and yadda, yadda, like you do when you talk to your doctor, and she sits there and she's writing notes, and she's all, "Mm-hmm. Yes, yes, I see, I see." We’re just talking- and my mom's there because, family bonding.
And so we finally get to the end of this whole session, and she brings up the idea that maybe it's not all my Pseudotumor, and she was very nice about it. She says, "I get it, I get the Pseudotumor, not many people know about it, not many people know how to treat it and what kind of comes with it, and how that affects the rest of the body. That's kind of just being figured out still, and it's kind of a case by case basis." But she mentioned that maybe I was throwing all of my eggs into one basket, is that the proper use of that term? Throwing all my... I feel like that's more just like talent or skill-wise, whatever. I'll throw all my eggs into that basket.
But so we were dumping everything into the Pseudotumor bucket- I’ll just keep using that one 'cause at least I know that one is more accurate. And it kind of was... I don't know, it kind of was interesting to hear that perspective because I just assumed that it had to do with what I already had and thought “why would I have other things if I already have this one thing”, but nonetheless, she was saying that I should get tested for Lyme disease. I kind of blew it off- I didn't blow it off… but I took this eye test that's supposed to help determine it. I completely failed it, and I thought, "Well, I don't know, maybe I just failed it."
And then we took a blood test, which is kind of obviously the deciding factor to see if it was in my blood- and that was that. I went home and we waited. I just waited for the test results to come back not really thinking anything of it. And to be clear, I was already diagnosed with hypothyroidism at this time, that is probably, I think my oldest disease, the one I've known about the longest, I think it's the hypothyroidism. I’ve been dealing with that for years, I think, two or three years, and so it's not terribly old, I haven't had it since I was a kid, but I've had it longer than my other illnesses, and with that, that one's pretty... That's pretty easy for me, not to say that it's easy because you don't want any disease, and anyone out there who struggles with hypothyroidism or any sort of thyroid issue knows that it's not easy-peasy. It's a lot of figuring out what works and what levels and what medicine works for you and how it works for you. But basically, the thyroid is this organ, I guess, in your neck, it's kind of shaped like an upside down triangle, I guess you would say, and it just releases hormones that helps your body…I guess… Every organ has its job, has its duty, and the thyroid has its duty to help the body. But what happens is, those hormones keep you going and keep you energized and keep your body running smoothly. If that isn't happening, if it's underperforming, that's called hypothyroidism, and that's what I have.
There's another form called hyperthyroidism, and that's kind of how it sounds, it means it's overacting and it's releasing too many of those hormones that you need, but mine is hypo. My body doesn't like doing its job, so of course, it's the underacting form. So I was diagnosed with hypothyroidism. Basically when I was first diagnosed, I was seeing a lot of symptoms for that, like my hair was falling out, my extremities, like my hands, my feet were really cold. I was gaining weight, well I was not gaining weight but just having trouble losing weight. And those are all symptoms of hypothyroidism as well as fatigue and several others. I mean everyone has their own symptoms when it comes to their diseases. Everybody's body- every body is different. Just a disclaimer, I feel like those... If you have those symptoms, don't automatically assume that you have a thyroid issue, but honestly go check it out.
You should go check out your T3 and your T4 and your TSH, which are all those hormones in your body that relate to the thyroid, because why not? Be on top of your body. Don't let things slide, be your healthiest you. Do you know how many times I've gone to doctors and said, "Wait, can you actually test this, too, and can you test this like I really... " The amount of times I've gone with my gut and been right is more often than not. I used to think I was just a hypochondriac. I used to think I was just always sick- I'm always sick. Am I just making it up? Am I just thinking and making myself sick- but no, I actually had these things, so trust yourself and go with your gut! With my thyroid, I was much more on top of things. I knew my medicine- I was taking a certain medicine, I like the medicine I was taking, I took it every morning, I didn't eat for 30 minutes, and then I went on with my life.
It was very simple, it's a tiny pill, and I kind of had that one under control, so that one was something I know, something I've had, and I know those symptoms a little bit apart from the Pseudotumor mainly because there's one symptom that's unlike my Pseudotumor, and that's my hair falling out. I know that when my hair is falling out more then it's probably a thyroid issue and not so much my Pseudotumor. When it comes to fatigue, I'm just saying, "It could be anybody.” But the hair was a detour to the hypothyroid, that was something I had known about, and that's something that I have been able to cope with for years.
But hearing about the Lyme disease, I was confused 'cause I didn't... I don't know, I grew up in Las Vegas and there's not an abundance of deer and ticks there, and not even much forest ground, so that was confusing. But I'm sure you're all thinking, "Maddi, you dumb-dumb, you live in New Jersey, which is a cesspool of deer and ticks." So honestly, I think that must have been where I got it, unless I was in Wisconsin on vacation one summer and I got it there. Honestly, they don't know where it came from, but so my doctor contacted me and she was like, "Girl, you got that lyme, the lyme is in your body." Which was strange, but she said it was lower, it didn't... It wasn't glaring on the results, and she mentioned that it was because it might be lying dormant in my system because of maybe how old it is or how long it's been in my system. If you're a doctor, give me the email, give me the facts. The other problem is- just really quickly- the other problem is, I feel like I have so many things wrong with me, and so I take so many medications and things like that, that sometimes I forget which test is for what and which thing is for what.
I have to kind of remind myself and study my own medical history so I'm aware of it. So she figured that I didn't know where it came from, and that I'd probably had it in my system for a while. The thing with lyme is typical symptoms include fever, headaches, fatigue… sounding familiar?Sounds a lot like the Pseudotumor, and then it has this characteristic skin rash, and I'm gonna butcher this name, and so many of you are gonna be cringing in 0.8 seconds, but it's called erythema migrans, something like that. So basically, it's a skin rash and it looks like a bull's eye, you got the little dot where they bit you and then you have a red ring around it, and that is like a sure sign of a tick bite. So people see that and they're like, "Tick," and then they go to the doctor to make sure they don't have lyme.
And basically with lyme, if you catch it, you just treat it with antibiotics for like 10 days to 14 days and you're good to go, you can treat it for... Like you can treat it pretty quickly, and sometimes you're not good to go, but for the most part, if you find it and you treat it, you're in better standing than if you don’t. That was my problem, it's been left untreated for so long, they now don't know how long. And so the infection can spread to the joints, the heart and the nervous system, and it can just really inflame and kind of start hurting your body, and it appears as... Like I said, it appears as those symptoms: severe headaches, neck aches, heart palpitations and joint pains, and these were all things that I was feeling, but I threw in the Pseudotumor bucket. And so hearing that I was like, "Oh, okay, great. Another illness that just gives me the same exact symptoms as my brain does with slight differences here and there."
And so we found this Lyme disease, and I'm gonna be quite frank with you, I'm gonna be honest, we haven't figured out a plan of attack quite yet. We're doing some basic stuff, but nothing quite... Nothing really serious because I was just diagnosed. They just figured it out. I mean I'm gonna have a phone conference with my, I almost said with my teacher- with my doctor… with my teacher… no, I'm gonna talk to my doctor. I think it's next week- I need to put it in my planner- but I'm having a phone conference, and that's when we're really gonna talk about the symptoms I've been having and how we can treat it and fix it. So that was that. That was when the Lyme disease became present and made itself known, even though it's kind of been sitting in my immune system. The other thing the Lyme disease did, wait for this roller coaster, it got into my system, and then it invited all of its little parasitic wormy bacterial friends in, and they were like, "Let's have a party up in here because this bouncer is not great at this club, so anyone could get in."
And so now everyone is just been partying in my system, and then Lyme disease was like, Great guys, have a fun party, I'm gonna go take a nap." And so the Lyme disease is kind of sleeping right now while all of its friends are partying, and so we have, well, we have the theory. They told me, this is not a theory, they said that when I get rid of the parasites and the bacteria and the worms, which I'm in the process of now, then the Lyme disease will have more of a reason to kind of wake up again and be like, "Hey, hey, hey. Oh, what's going on? Where did all my friends go, the party is not over." And then that hopefully is when we can kill it, nail it. That's the Lyme disease. However, another thing we found in my blood results was super, super high inflammation markers that directly correlate with Epstein-Barr virus, which I know I mentioned it before, it is the virus that then turns and mutates into mononucleosis, which is mono, which I had. I've had it, I know I've had it when I... I knew I had it when I was a kid. And so when you get mono, it kind of lives in your system.
It doesn't become active, it just kind of, is there- 'cause it's like, "Okay, remember me." It leaves a stamp, but then it doesn't act up again… that's just what mono does. With me, we are finding that it was chronic- we are finding that it was still activating in my system. This no good, because that can cause severe issues with inflammation and just so many problems. It's kind of... It's like you find that through symptoms of mono, and it's exhaustion, it's pain, it's all of these things that I had already been facing, and when they found my markers- it was off the charts, they... I think it's supposed to... 2000 is the normal number, I don't know 2000 what… I don't know. 2000 is kind of the height or the normal number, and mine was at 12,000… it just was so far, it's so far beyond what it should have been, that's when they noticed that it was still active in my system. And chronic mono is a little freaky here. I was just doing some research, and you really have to catch that 'cause that can lead to some problems in your system- especially in your liver, because that's kind of where the mono or the EBV- the virus is living. It kind of lives in your liver 'cause your liver is supposed to clean you out, do that thing… like a little vacuum.
So the virus was just kind of hanging out there and doing its thing, instead of being treated or being dormant or not doing anything, and so it has already affected my liver to the point where I have a fatty liver. And I don't know if you guys have ever heard of that. The only time I'd ever heard about it is through alcoholism- or not even alcoholism- just a severe consumption of alcohol. That's kind of when I had heard it, 'cause it's the first stages of liver failure, and not to say that I'm in liver failure… it’s reversible… your liver heals itself, so there's still things that can be done. But basically it just creates this fatty layer because it's being affected, not really destroyed, but just harmed and not able to get its way out of that harm. And then after fatty liver there comes the second stage. There's three- there comes a second stage, and that's when things start to get serious and you really need to care for it, and then you're going into... And then third stage, which is liver failure.
So I'm hanging out with a fatty liver because of my Epstein-Barr virus, and the only way... I was looking, and the only way to really treat chronic EBV is through... It's like this specific blood plasma or something, which sounds a little freaky, but like I said I'm still figuring that one out. I don't quite know a ton about it because it's a recent thing- that’s another issue I'll be discussing with my doctor to talk about and figure it out. You guys are going on the journey with me, you thought I had it all figured out, you thought I had my medical history under wraps. No, we're going on it together, we're figuring it out together. There are still days, like last week I was in the hospital. I'm fine, I'm all good. We just like... I just had... I was having pain like I do, and it was a little different than normal, and I'm pretty in tune with my body. And then I went to a quick, urgent care, and then people get nervous, they hear my medical history, they get nervous, and they always end up sending me to the ER.
And I went, and I was fine. I came back home, and they just chalked it up to food poisoning or something that wasn't leaving my system like it should be, but just fun, fun sick people things, when your immune system doesn't work. But yeah, so that's kind of... I wanted to delve a little bit more into those ones, and as I'm sitting here talking now, I realize I didn't quite give you all of the scientific facts and information and all that good, good stuff, good meaty, juicy stuff about all the illnesses, but if you wanna know more, let me know, or honestly, you can look it up on Google. This is just my experience with these. Everyone is different. I'm not speaking for the majority of people who have hypothyroidism, or Lyme, or chronic EBV. But yeah, those are my other ones, some of them are more common, like hypothyroidism I think is my most common disease. And then, Lyme disease is also pretty common, not severely common but more common. And then, chronic EBV is rare, so I get to add that to my rare disease list. So, Epstein-Barr virus isn’t, but if you have it chronically that's a little bit more rare. So yeah, those are my other diseases.
And next week, I'm gonna do a little dive into hormones, and my hormone issues, and my disease regarding that… and just menstruation. We're just gonna dive right into vagina land. Not really, but I will talk about more of that stuff. If you're weird and you wanna skip, you can, but if you skip then you're lame, you need to know. Everyone should know. So that's next week. I did wanna talk about a little, I just wanna... I wanna end this podcast on a little anecdote that kind of lifted me up this weekend when I was having a bad weekend. I got sick this weekend with just a cold, a flu. I've had a crazy three weeks, I had to fly back to Vegas for a weekend for family things, and then I came back and then I had all these auditions and I had all these intensives coming up, which are just workshops in New York City with casting directors, and just really cool important things that were really exciting coming up, and I think I just... From being in the airport and on the plane and around so many people and talking to people and being with people and being around sick people, I just picked up a virus.
It just happens, especially with my immune system now being a little bit more compromised… so I got a cold flu thing, and I ended up not being able to go to the intensives that I was supposed to go to on Sunday. That was such a bummer for me because I just got into a black hole of, "I hate being the sick one, I'm always the sick one, everyone always thinks I'm the sick one, I can't do things all the time," and I was just feeling really bummed. And then out of nowhere, I got this text from an old high school friend. I don't think I've talked to her in four years. And we were just talking, and she had texted me out of the blue. I don't even think she listens to BrainFart, she just, I think saw posts that I had posted on Instagram, and she mentioned, she just said, "Hi, how are you doing? I hope you're living your best life, I love you." And that kind of was it. It was just this kind of whirlwind text out of nowhere, and it was so nice, and I texted her back and I said, "I'm doing great, I'm dealing with all my health issues, ha, ha, ha, I hope everything is great. I hope you're living the beautiful life you deserve," or something along those lines.
And then, I got this text back where she was like, "Health issues? I've been dealing with health issues, what are yours?" And so we dove into this entire conversation about health, and our different health issues and our different paths that we were taking and how they were similar, she was doing really similar things in LA as I was doing in New York, and it was all of these things coming together, and both of us realizing that we were dealing with health issues on top of it. And she has some other health issues that aren't quite like mine, they're not exactly like mine, but they were... They're chronic and they affect you, of course they're gonna affect you, any illness is gonna affect you, but they seemed more like neurological and along my line, so it was really interesting talking to her and just diving in deep to what she was dealing with and what I was dealing with. And it was nice talking to this person about it, especially when I was feeling sick and feeling bad about not being able to go and do something that I really cared about.
And it was nice to hear her say, "That happens to me all the time. I always feel like I'm the sick one, I always feel like I'm putting in so much work and then I get sick and then people are confused to why I'm not there and why I'm not doing something." And it was so refreshing because as much as I like... I got such good response after I started putting BrainFart out there, and people emailing me and messaging me and texting me, and just relaying their stories or relaying stories of their friends, and I got so much of that in the beginning, and then it... You kind of forget, you don't forget, but you start to feel alone… I started to feel alone again in my struggle and what I'm going through and all the stuff, and it's just me, like, "Life is black." And so I was feeling all of this stuff, and then to have someone remind me that it's happening to a lot of people. There are a lot of people in your life, and most of the time they might... They're probably going through something you're going through, or similar, not exactly, everyone's experience is different but something relatable.
And whether that be illness or emotional distress or mental illness, or grief, or anything, chances are someone in your life has dealt with it, not in the same way, not anywhere near the same way that you are or that I am, but maybe something that you could talk to them about. I'm not here to be this inspirational speaker, I just wanna relay my experiences and what I have dealt with, and what I found works for me because I don't know. That just made me feel so much better in that moment, 'cause I realized, and I had this reality check of, "I'm not alone, I've never been alone, I just sometimes shut that out because I'm feeling bummed about something." And so, I don't know, it was just really a poignant text to receive at that time. It was nice. I thank her for reaching out to me. I don't know if she'll ever listen to this, but I'm grateful because it was exactly what I needed at that time.
And hopefully, hopefully something like that will come along for you, it'll give you that little push or little pat or something to give you that. I don't know. I don't know what I'm saying anymore. But yeah, I think that's it for this episode. I just wanna thank everyone again for listening. I know I always say that, but it's really kind of a nice passion project for me to get to do this, I really enjoy doing it. Even though if you heard my first recording of this episode, you would have thought that this was the last thing I wanted to be doing. But that's why I record it. I re-recorded it. I was like, "I can't send this out, I love doing this, this sounds like someone's pulling my teeth out." So there's that. Alrighty. Until next time, guys. I hope you have a great, whatever time it is there, and I'll talk to you next week. Bye.