This content effectively demystifies complex dysautonomia by grounding clinical protocols in authentic lived experience. It serves as a vital bridge between cold medical data and the nuanced reality of chronic illness management.
Deep Dive
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Deep Dive
The Battle Continues…Added:
Hi everyone. It's kind of been a hot minute since I've made a video again. I promise I do not mean to be taking such long breaks from YouTube. It's just that things with my health have been very unpredictable.
There's also just been a lot of chaos going on over the last couple of weeks.
And for me, the way my chronic illness is, sometimes I'll have a day that's better, like today, where I can be out in the world, I could be making a video.
And then there are other days where I just don't have the energy. But I really am going to try to be more consistent.
Things with my health are still not in a great place, but I do feel like this last week has been a lot better. The main reason that I haven't uploaded in so long though is because I got sick. I had a virus. I don't know what it was, but I had a fever and a lot of cold symptoms. And for me, when I get sick, not only am I dealing with the symptoms of the virus, like for a normal person, a fever is not a fun time, but for me, not only do I just have that, but on top of that, all of my POTS symptoms just flare up. So my autonomic nervous system is even more deregulated, and it's just not a fun time. So that had me out for a hot minute. And then there was also just a lot going on in my life. I had a lot of different doctor appointments, and I finally got a tilt table test done. So for those of you who don't know what a tilt table test is, it's basically the test that they use to diagnose POTS, which I already knew that I had it. I talked to my primary care doctor, and based on my symptoms and the way that my body reacts to being upright, um she told me that she had enough information to diagnose me with POTS, but unfortunately a lot of other specialists, they would not take that diagnosis seriously. So, I had to go and get a tilt table test done. So, the way that works is they have you lying flat on a table and they strap you up completely. So, that was interesting.
And then they slowly raise the table up, so you're standing, and they monitor your blood pressure, they see what your heart rate does. I've seen a lot of people with pots say that is completely barbaric. And I'm sure for a lot of people that is their experience, but for me, I'm going to be honest, it really was not that bad. But, my test also was over extremely quickly. The test was scheduled to go on for 20 minutes, but after, I'm not even kidding, 20 seconds, they told me that the test could be over because they had all of the information that they needed because my body is very sensitive.
And, you know, the moment that they had me go upright, my heart rate just skyrocketed. They said it was well above their protocol to diagnose pots because I do have a pretty severe case of it.
And I'm just up there and honestly, they seemed kind of shocked. They're like, "You can go down now." And I'm like, "Are you sure? Like, if I stay up here, would we get more information?" And, you know, they ended up having me stay up there a little longer because I'm like, "I'm okay to be up here. Honestly, this doesn't feel any different than what I'm already used to." After only 5 minutes, they had me go back down and I could have stayed up there a lot longer, but I think my body was kind of freaking them out. And also, you know, it just wasn't necessary for me to be up there. But, the thing is, like, it just didn't really feel any different than when I get up out of bed in the morning because, you know, my symptoms really are that severe. And a lot of the time medical professionals, they don't seem to believe me when it comes to my symptoms and what I'm going through. But anytime they put me to the test, I shock them. This might be a bit TMI and it's a bit gross, but a few years back ago, I caught this weird rash. Like, I can't even remember what it was called. I don't know why, but I'm just prone to catching rashes. I've come to the conclusion that it must have came from the gym.
Yuck. Sanitize that equipment before you use it, people. And after. Anyway, I got this rash and the only way to get rid of it was to use liquid nitrogen. If you don't know what that is, I'll insert a description of it because I'm too lazy to try to describe it.
But that stuff is no joke. And the dermatologist that was spraying me with the liquid nitrogen, she said that we were probably going to have to do several different sessions because she didn't think that I would make it through the whole thing at once because it's that bad. Like, she said there's no way that she could do that. And, you know, she started and she's like, "If you need me to stop, tell me to stop."
But the thing is, I never told her to stop. We got through the whole thing. It was done in one day, one go. I am not just some kind of a wimp. I know some of you that watch my videos think that I'm just making this up, that I'm a wimp.
That is not the case. Anytime I'm ever put to the test, I prove that. And as far as the tilt table goes, like I said, I know for some people it really is a terrible experience.
And for me, it just it was over so fast.
I know some people are up there the full 20 minutes. I've heard people even say they were up there for hours, which I can't even imagine leaving someone that has POTS in that position for hours. And I also got lucky because I had a really good team. And you know, my experience with medical professionals and doctor appointments, it has not been good so far, but the team of people that I ended up with doing this test on me, they were so great. Like they were so funny. We I clicked with them. We were making jokes.
It was not a bad time. And now nobody can try to discredit me. No one can tell me that I don't have POTS. I do. I've got the official diagnosis. So now hopefully I can get in and see a specialist, someone who might actually be able to help me. I will say I feel like this last week I've been in a lot better mood. Maybe it's the vitamins that I've been taking. I talked about this in my last video. But I discovered that I'm deficient in vitamin D and also was pretty low in B12. Um the last few weeks I've been taking that and I feel like I've had more energy. You know, it's has not been a cure, but I feel like it is making a difference. So that's a good thing. I also started taking Zyrtec because I'm pretty sure that I have MCAS. I have not been officially diagnosed or anything, but I have hypermobile EDS and POTS and apparently it's very common when you have those two conditions to have MCAS as well. And I started taking Zyrtec because I know for some people that can actually help treat MCAS. And ever since I started taking it, I feel like that's been doing some good for my symptoms, too. This has been a long, hard journey and it's far from over. The battle continues, but this time I do feel like I actually have some good news. I still have a long way to go. I'm still struggling a lot, but at least there's a little light right now. And something exciting is I actually did get to go to a concert last week. And I did not know if I was going to get to go to this. I had bought tickets how many months back ago, but then my symptoms got so much worse. I thought I probably wasn't going to get to go, but somehow I pulled through. I started feeling a bit better and I went and it was an amazing time.
The headliner was Dayseeker and they were just so amazing. I actually got to meet them and they signed my poster and I got a picture with them. I uploaded it to my Instagram and something really cool is that the bassist and the drummer both like the picture. Like they are just such nice guys and their music is amazing.
I absolutely love them. And also not only was the headliner Dayseeker so amazing, but the openers were so good, too. Like we had Sachi Six, which I'm obsessed with them. They just recently released a new album and I cannot stop listening to it. Also Windwaker's. I've been wanting to see Windwaker's for forever and they were one of the openers. It was honestly a dream lineup.
It was one of the best experiences. I'm so glad that I was able to go and I managed to get barricade, which made it even better. We made it to barricade.
And I also got a Dayseeker pick on certain picture. And this is beyond cool because I literally gasped when I got the pick and I saw this. One of my favorite anime characters, Choso from Jujutsu Kaisen, is on this pick. Like, how cool is that? Well, yeah, that's just a little update about what's been going on with me the last couple weeks, why I haven't uploaded, and I just I need to get my act together. Some of you guys have called me out, and you're absolutely right. I should not be taking this long of breaks. And like I said, I didn't mean to. I legitimately was sick.
But hopefully now, I can be more consistent.
Fingers crossed. I probably should let you guys go now. My mom is actually going to be taking my picture in just a little bit here at this very park. She's a photographer.
And if you want to see those pictures, I'll be uploading them to my Instagram.
I always put my Instagram in my description, but for those of you who don't know what it is, it is delgrae00.
So, if you want another form of keeping up-to-date with me, go ahead and give my Instagram a follow. Well, yeah, that pretty much sums everything up. So, I'll see you in the next one.
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