 Hi there, my beautiful, lovely, talented, intelligent internet friends. Welcome back to my channel. Thank you so much for joining me here today. This is a video that I've been very unsure about publishing. I've been meaning to you, but I just haven't because I haven't wanted to talk about this. And if you are not someone who has dealt with chronic illness or pain or undiagnosed crap for years, some of this might not make sense, but I'm gonna do my very best to explain it. But I got undiagnosed with something. Something that was a pretty decently serious diagnosis. Something that has affected my life deeply for, oh you know, a decade. Something I thought I had an answer for and now I don't, which is okay, but is also not okay. So let me tell you why getting a clean bill of health when it comes to a particular diagnosis is both a good thing and also a difficult thing to deal with. So generally speaking, getting diagnosed with something is not a good thing, right? But I have discovered in my short life, 29 years here on Planet Earth, that having an answer is generally better than not having one. I do think getting diagnoses for certain things can become unhealthy, like you can take it in unhealthy ways. Like, for instance, PTSD. Like I am PTSD. This is who I am because it's this label that I have. It's this diagnosis, but that's not really what it is. It's just an indication of what's going on. I remember when I actually got diagnosed for PTSD, it was a terrifying thing, but also this huge relief because I finally was like, oh, I'm not absolutely insane. There is a logical explanation for what I am dealing with, for what I am going through, for why I feel this way, why I'm experiencing life the way that I am. When it comes to my physical health, it has been a real struggle. I've just had lots of challenges when it comes to my physical health. And I've told the story in bits and pieces before on the channel, but in my early 20s, I started having severe migraines, a lot of neck and head pain, just issues where I couldn't work consistently. I couldn't function. I would be out for a day at a time out of nowhere because I was in so much pain, very dizzy, very nauseous. This led to so many doctor's appointments. I like know all of the neurologists in Colorado at this point. And eventually I was referred to the Mayo Clinic in Rochester, Minnesota. Right before that referral came in, I was diagnosed with a Chiari male formation. Now, a Chiari male formation is basically where the back of your brain is crushed up against the back of your skull because there is insufficient space. I was like making the joke that my brain is just too big for my head, which is basically what it is. And it causes a lot of problems like head pain, neck pain, dizziness, trouble concentrating, nausea, migraines, headaches. I think I said that already, just a whole laundry list of things. And it can come in different severities. It affects different people differently. Right? I was diagnosed with this and told that I needed to have brain surgery, the kind of brain surgery that's pretty severe. By the way, just definitely, I'm going to show some pictures here of what it would have looked like had I had to have had this. If you're squeamish, close your eyes for the next 10 seconds. So this is the kind of scars that I would have been left with. There's not a high fatality rate on the surgery, but it was still terrifying to me to have the entire back of my brain opened up and have things played with. And I was told that there was a chance it could help things. There was a chance it could make things worse, but it was a chance I was willing to take because the life that I was living sucked. And having an answer and having a chance at life being different, life being better, was something I was willing to take. And it's what they recommended. So, scheduled brain surgery, shaved my head for it. I told the story in another video, which I'll link up above or down below if I remember, which hopefully I will. And the day of surgery, though they had previously conclusively diagnosed me with a Chiari malformation from imaging from my neck and spine and my brain. The day of surgery after another image that they'd gotten a report on that, by the way, they got these results before they had me shave my head. So, take that for what you will. But day of surgery, they cancel it because they said we aren't convinced that it's progressed far enough that surgery is going to help. We think the risks go away. The benefits. I was super upset because as much as I didn't want to have surgery, I did want to feel better. And my chance of feeling better was now taken away from me. And we were back to step one of questioning everything and not knowing what's going on and seeing more doctors and waiting for more referrals. And it was a very devastating moment for me looking back. I'm really glad that it didn't happen. I'm really glad that my doctor canceled it, but here's the thing. I had some recent imaging done on my neck and my brain because for a while there, so my symptoms got a lot worse. For the record, a Chiari malformation is not something that comes and goes, you have it or you don't. It's a structural thing. It was confirmed that I do not have a Chiari malformation. I'm just going to be completely honest with you guys. And I realize that there are some people who maybe are not going to understand what I'm saying here and maybe may look at me poorly for it. And that's okay. When I got off the phone with that doctor telling me I do not have a Chiari malformation, I was misdiagnosed. They were incorrect in how they looked at the imaging before. I was so upset for two reasons. Like I kind of was mad at myself for being upset because I'm like, this is a, this is a good thing. You don't have something wrong with your brain. Be happy. But I was in tears because I no longer had any kind of explanation for the past decade. I felt like I had wasted two years of my life going around with this Chiari malformation diagnosis asking, can you help me? Like this is, this is bad. I don't feel good. Here's what's going on. Every day is difficult and painful. And here's why. Maybe there's some kind of solution or, you know, whatever. And that answer was, yet again, a question mark. And to be totally honest with you, that is kind of devastating. At least in the moment. Because as much as I don't want something to be wrong with me, I don't want to not know what was going on. The second reason I was kind of upset was because they were going to operate on me with a faulty diagnosis. They were going to open up the back of my skull, give me some crazy ass scars. By the way, I think scars are cool. I don't have a problem with them. But some crazy ass scars, a risky surgery that could have made things worse based on an incorrect diagnosis. And here's the thing. That day that they canceled surgery, right, they told me that they didn't think it was progressed enough, right? Now that was based on a second set of imaging that they had done to confirm it. This is pure conjecture. So please take this as nothing more than my thoughts and feelings and opinions. What I kind of guess happened is they said I had Chiari scheduled me for open brain surgery, got the second set of imaging back right before my surgery. And we're like, oh crap, we done screwed up. We messed this one up. Let's just cancel it. Tell her that it's for her good without saying that you don't have a Chiari malformation because we misdiagnosed you. Now, the nice part of me thinks they were doing the best they can. That's probably not what happened, but it's really hard for me to believe that they got a second set of images. And the day of surgery, we're like just kidding. We're not doing surgery without telling me that maybe the reason for that is because I didn't have the condition that they diagnosed me with that they were about to open up my brain for. Again, that is just pure conjecture. Maybe that's not what happened. I'd like to think it's not, but it felt in a small way, kind of violating. I don't know. I don't have the best relationship with the medical world. And I try, I'm trying not to get too cynical to still appreciate and trust doctors and I do, and nurses, which I very much do. But anyways, going back to present day, I don't have a Chiari malformation. And this is going to sound really dumb, but another part of me was like, well crap, I've told people that I do have one online, like lots of people know that I have a Chiari malformation. I've made videos about it and I don't have it. I've been talking about something that I don't actually have. I've been talking with no authority on it, like crap. Even though those videos and stories were made with complete honesty. That was not, I don't, I don't have that diagnosis. And so I'm not sure, I feel like that looks bad, right? But I didn't know. So that is what it is. And here's the other thing that I've kind of settled upon in the last few days. I am doing a lot better than I was five or 10 years ago. I found a lot of ways to cope with the pain that I have. You guys know I recently came off well pain medications for the first time in a decade. I've stayed off of them. I'm really excited about that. So I found ways of coping with things. Symptoms, issues, pain. I've learned a lot overseeing so many doctors and going to so many different places and just learning myself and learning how I work, learning my body. So at this point, my quality of life is such that having looked for other answers for so long because even though I was diagnosed with a Chiari malformation, nothing helped it, right? So I was still looking for like, what was, what else can I do to deal with this? And so now I'm just back to what else can I do to deal with this? And I'm doing those things. I'm exercising, trying to eat decently. I get enough sleep. I stretch. I have different like topical stuff I put on my neck and my head. And when I have migraines, I know what to do about it and all of that. So I'm okay. Like I'm okay. I'm able to work now, not super consistently all the time, which is frustrating, but I'm able to work, which I am incredibly grateful for. It's weird when something that you build a story about yourself because of, which is what diagnosis is often lead us to do, like we believe certain things about ourselves because of those diagnoses. It's weird when that story is suddenly like changed, though I am so glad in reality that I don't have a Chiari malformation in a weird ass way. It still feels sort of like a loss, sort of like the rug being ripped out from underneath me because now I just know that I'm sick a lot and I don't really know why. In all the things that I've sought answers for in my life with my body, it was one thing that was like, well, at least I know that that is the case. At least I know I'm not crazy because there is something structurally wrong with me. I know that's not the case. And here's the thing. I'm still not crazy. Migraines are migraines. I have chronic migraines. There can be a genetic component, but at the end of the day, they don't really understand what causes migraines. They don't have a great understanding of how to fix them, though they're working on it. And after going through all of the extensive testing I've gone through, my guess is that I have chronic migraines, which means I get them a lot and they get bad. And that's probably the majority of what I experience and I deal with. So all that to say that I'm okay and I'll be okay. And I'm not presently looking for more answers mostly because I'm exhausted and I don't want to take the time for it, but also because I have figured out a way to function. I figured out a way to deal with symptoms and to take care of myself and all of that. And I'm doing that. But I wanted to have an honest discussion about what it feels like to get undiagnosed with something because it's not as simple as I would like it to be as I would think it would be. I think that's the true for many people. Oftentimes I've talked about this before when a doctor would come back after some kind of scan. Like recently, when I was sick for six weeks with some weird respiratory thing, which what could that? I did test negative for COVID at the beginning of it, but I don't know if that's what it was or it wasn't. Probably not. Anyways, they couldn't tell me what was going on with my lungs. I had a doctor say, this doesn't really happen. I'm not sure why you're still hacking like crazy and why you can't breathe and why your chest hurts. Like I just, I don't know. I'll refer you to someone else. Like that was literally how that conversation went. Those things like crush me because I just want to have answers. I think it's human nature to want to know what's going on when you have an explanation for something. Things become easier to deal with when they're amalgam. I think that's a word analogous. I'm not sure. I'm not smart. I am smart. I just, I just don't know how to say that word. It's scary. It's hard to like fight an enemy or deal with something that you can't see. You don't have words for. You don't have a description for. And at the end of the day, that's okay, but it is uncomfortable and weird and different and challenging. So I don't have a key eye malformation, which is news to me. I am saddened that I was going to have brain surgery that I didn't need. I'm very grateful. So very grateful that they cancelled it. And at the end of the day, this just sort of feels weird and I'm going to keep living life, seeking help when I need it. Hopefully things will remain fairly stable and continue on. I was about to say it's weird how emotional I can get about this and how emotional diagnosis and health can be, but like, it's not weird. It's very human. We feel things. We feel things about ourselves and our bodies and it's not great not to have answers sometimes. And I want to have some kind of statement to wrap all this up, but those are all the words I have right now. So I just want to say thank you to you watching this video and thank you to my patrons over on Patreon for continuing to support me when I'm doing here in this channel. God, I cannot thank you enough. Sincerely thank you for supporting me, especially during this time. To you, whoever you are watching this video, thank you for spending a few minutes out of your day here with me. Time is a precious and valuable resource and it means the world that you chose to spend some of yours with me. Thank you. I love you guys. I'm thinking about you. And I will see you in the next gosh darn video. Bye guys.