I Just Want My Life Back

How's it going everyone? It's been a hot minute since I've sat down and talked to you guys. And no, the aliens did not get me. The men in black did not come for me for my last video. I am okay.

But I'm going to be honest, I've had a pretty rough couple of weeks and I'm also feeling pretty upset right now. So, I'm currently in the Kohl's parking lot and I just came here to get a pickup and I ended up on the floor because my heart rate just got so high that I just couldn't stand up and I was stuck on the floor for quite a while and it was pretty defeating. Just a very defeating feeling.

These last couple of weeks have just been so chaotic and I don't even know where to start because a lot has happened over the last couple of weeks and I've either been in bed or I've been at the clinic and that is why I have not made a video because I ended up taking a new medication. It was a medication that my intuition was telling me I shouldn't take. Like I just had this really bad feeling about it, but my doctor convinced me to give it a try and I did. And I ended up having a really bad reaction. And it was honestly very similar to when I got serotonin syndrome. If any of you guys have seen that video, just really scary side effects. And I'm definitely still feeling them a bit today.

I finally felt like I was well enough to get up and go out and do something. So, you know, I got myself put together for the first time in a while. And I went to Kohl's to get my stuff and that didn't really go very well. The side effects that are lingering from taking that medication, they're really messing with my head right now. So, if I seem kind of spaced out, that is why I just don't really feel like myself right now.

And a lot of really upsetting things happened over the last couple of weeks. I mean, there were some positives, too, but there was a lot of negatives as well. And, you know, whenever I come on here, I try to be positive. I try to put on a strong face. And I am typically good at masking things. Like, even when I'm not doing very well, I'm still able to put on a strong face. But lately, I feel like the mask is starting to slip more and more, and it's harder and harder to hold myself together because things are just getting to be too much. I am so incredibly overwhelmed and I don't know what's going to happen to me. And I just want my life back. My life has been put on hold. I had to drop out of school. I've missed out on countless job opportunities, social opportunities. I'm just stuck at my house so much of the time and I just want to live again. Like I have not been living. I've been surviving and I feel like a lot of this could have been better by now, but I'm just constantly dismissed by doctors over and over and over again. And I'm just knocked down harder and harder and harder.

The lighting is probably so crappy right now. It's actually in the evening and I'm not at the park like I typically am. We have a change of scenery today because I just spontaneously decided to get the camera out and talk to you guys because it has been a while and the lighting keeps getting worse and worse. Like look at this. Do I move the car or do we just roll with this? You know what? This is real. We're just going to keep it.

So about two-ish weeks ago, I went to see my primary care doctor because we were going to discuss all of the craziness that happened when I got my autoimmune testing done. For anyone that might be new here, back in December, I tried to get autoimmune testing done because I have been having a lot of unexplained symptoms. I have been very sick. I deal with very severe fatigue. My heart rate is always crazy high. I have POTS. And whenever I'm upright, at best, like the best I can hope for is my heart rate being at like 130 beats per minute. And it can go all the way up into the 170s. And it's terrible. Obviously, with that comes a lot of really terrible symptoms. I feel like I've been losing so much of my hair. I get so many comments about how lifeless my hair looks, but you guys got to understand, I am not well. This is affecting everything. Like my body, it is just pure chaos.

Anyway, I was supposed to get that testing done back in December and I went to the lab and I got my blood drawn and then quite a bit of time passed without me hearing anything. So, I contacted them and it turned out they took my blood, but they didn't use it. They didn't run any of the tests, which was really weird, but I'm just like, you know, health care professionals, they're human. People make mistakes. It's okay. So, I went and I got the labs drawn again. And what do you know? The same thing happened. And I thought the third time would be the charm, but nope. Three times in a row, they take my blood and they don't test it. What they did with my blood, I couldn't tell you.

Fast forward four months later, I was finally able to get in with my primary care doctor because instead of them just figuring this out for themselves where they were going wrong, they decided to make me wait again until I was able to go in and see the doctor. So, I go in and I talk to her and then she has me go to the lab again and I get into the lab and I'm like, "Okay, do you guys have this, this, and this, and this?" I wanted to make sure they were actually going to run the test, that they knew what was supposed to be happening. And they just kind of looked at me weird, and they're just like, "Are you sure you're supposed to be having all of that done?" And I'm like, "Yeah, this is my fourth go." So then they have to go and get my doctor and confirm with her that this is actually supposed to happen. And it's just so crazy because had I not have said something about it, they wouldn't have done the test again. It's like what? Oh, I don't know. That's all beyond me at this point.

So, I finally got the autoimmune testing done and my ANA came back elevated. So, because of that, I get sent to rheumatology and you know, I felt so validated. I'm like, there's no way they can dismiss me now. my ANA is elevated. Something like this shows that something is going on in my body that's not supposed to be. They cannot dismiss me. So, I go to rheumatology and I just had the worst experience. This was one of the worst experiences that I've had thus far. And that's saying a lot because I have had pretty much nothing but bad experiences. It was weird right off the bat. The second the doctor walked in. I don't know. There was just a weird vibe and I tried telling her my symptoms and she just completely dismissed me. Like she did not care what my symptoms were. She did not care to hear them. I tried to tell her. She just shut me down so fast. I was just so taken back. I just I almost started crying in the appointment. Like I just couldn't even believe what was happening. And I was just thinking, I thought this appointment was to figure out what is wrong with me. Finally get some answers. And I thought that explaining my symptoms was a big part of that, but apparently not. She was not at all interested in any of it.

I always have my mom come with me to my appointments because I feel like it helps to have someone else vouch for me. It's pretty sad that it's gotten to this point, but I have just been dismissed time and time again. And we did convince her that I needed to get my vitamin levels checked, some of them. And she also checked me for lupus, which it turns out I don't have that. I don't have rheumatoid arthritis. Um, and she tested for some other things that came back. Okay. But I do feel like I'm gonna want a second opinion because my ANA is elevated and there are other things we could look into. But she just had no interest in that.

But my vitamin D levels came back and I was deficient and I'm also pretty low in B12. And I ended up starting B12 a couple days ago. And until now, like in Kohl's, I just my heart rate went crazy. But up until that point though, I feel like my heart rate has lowered a lot. Like I've been having a lot of moments where instead of a heart rate of 130 beats per minute, 140 beats per minute, I've had some moments where I'm in the low hundreds and sometimes even 90s, which that has not happened at all since I started tracking my heart rate last summer. So, that does give me some hope that maybe if I continue taking the B12, get those levels up and start the vitamin D, maybe I will start feeling better because I know that being deficient in that stuff is not good. And I was reading on Reddit and I saw a lot of other people experiencing very similar symptoms to me. So, I'm hopeful that this will help.

I know it's probably not the root cause or the sole cause because I do have Ellers's Donglo syndrome and you know I know I'm always going to have issues. I've accepted that at this point. But if things could just be managed, if I could just be functional again and be able to live my life, even if I'm dealing with things, even if I have some pain, even if this POTS stuff is still going on, if I could just go into a store and not have to worry about ending up on the floor, like if I could go back to school, if I could just work a normal job or just, you know, do whatever I want to do, like that would be enough for me. Even if I'm doing it sick, even if I'm doing it not feeling good, if I can just do it.

I just cannot believe the way I was dismissed in rheumatology. I don't know how they can do this to people. Like, you wait so long, so many months, maybe even years just to get to that point and then just to be shut down like that. It's not okay. The way that people are treated in the medical system is not okay. And it should never it just shouldn't be like this. People shouldn't have to go through this. People shouldn't have to fight so hard to be believed. And you know, I told her how this is affecting my life and she didn't want to hear it. And I tried telling her my symptoms and she didn't want to hear it. And I've been suffering for so long and losing so much of my life. They just don't care. They don't care.

Something positive though is I finally got an echo done on my heart. That's something that I've been needing done for quite a while. It took me a while to finally get that set up and I got that done and they said they didn't see anything wrong with my heart. Like my heart seemed perfectly normal from what they could see from that. So that is reassuring at least. You know, this whole time I figured this is probably POTS. But when your heart rate is going into the 170s just simply from standing, it's not a bad idea to get your heart checked out. So that's good news at least.

What's happening is my autonomic nervous system is just it's not working how it's supposed to when I stand up. Instead of my blood just being consistent throughout my body, it just pulls down and my poor heart just has to beat so fast to try to compensate to get the blood up. And it's it's just the worst feeling like just constantly having to worry that you're going to pass out or you're going to end up on the floor. I've been dealing with really bad brain fog. Sometimes it's hard for me to find the right words when I'm trying to speak. my energy has been so low, which I know people have noticed that in my videos how sometimes I just But you know, like I can put myself together and I look normal, but I really am really sick right now. And some days I truly just want to give up. Like some days I truly just want to give up on getting help because it just feels like no one's listening and no one's going to help me. Like all of my problems are completely unmanaged because I haven't been able to get help and I'm just on my own trying to figure this out and things have been getting worse and worse and worse and not better. And I just I try so hard to stay positive and I try to focus on the things that I'm grateful for because it does help to do that. But at the same time, you know, I've always said I'm going to be real on this channel and I'm not going to fake things and this is just the reality of the situation right now. Things are hard.

But even though I had that episode in Kohl's, the fact that I was able to get ready and go out today is a good thing because like I said, besides going to my doctor appointments over the last couple weeks, I have not been leaving the house because that reaction that I had to that medication just made everything so much worse. Oh my goodness, I'm being blinded by the sun.

I just want my life back. I don't need to have some spectacular life, but I just I want to be able to do normal things again. I just want to be able to do normal things. I want to get my degree. I want to be able to just go and work a normal job. I want to be able to go on a date if I want to, or just be able to go outside and go on a walk and not have to worry that I'm going to pass out. I want to be able to go to the gym again. Sorry.

And people will say that I'm coming on here trying to victimize myself, trying to get attention. But I'm hoping that with this video, maybe somebody who is going through something similar will feel a little less alone. And the things that I've had to deal with and the way that I've been treated by the medical system is not okay. And so many other people are going through the same thing. So many other people are being treated the same way and this is not okay.

But with all that being said, I know that I can't give up. I know that I have a lot of life left to live and the fact that my heart rate has responded to the vitamins already somewhat like that is a good sign. I was not expecting that at all, but I've done a lot of research and apparently being low in B12 can affect your autonomic nervous system. I'm not saying that's the root cause to why I have POTS, but it could very well be contributing. And you know, taking the after taking the B12 and the vitamin D and getting those levels up, maybe some of this fatigue will leave, maybe some of this brain fog will be a bit better. I'm also dizzy a lot of the time and I get these crazy migraines. I have this crazy face pain like that's focused around my eyes. I couldn't tell you what that is. They haven't been able to figure that one out either. There's just a lot going on and it's just getting to be too much. But I have to try to remain positive. I have to keep living. I have to keep fighting. I have to believe that better days are around the corner and that I'll get this figured out.

Now that I'm doing a little bit better after having that bad reaction, I should be able to start uploading more consistently again. I disappeared for a couple weeks there. That was never the intention. But unfortunately, things just got crazy and all that I really could do in that moment was just rest and then go to my doctor appointments to try to get answers. If you're going through something similar, just know that you're not alone. There are a lot of us dealing with similar things. And the way that people like us are treated is not okay. Something needs to change. I don't know if it ever will, but I will not go down without a fight. I will not. And I will keep standing up for myself.

The sun's going down and I'm starting to get cold now. It was really warm out before. I think I'm going to go get myself some food now. I'm really hungry. But yeah, I just wanted to give you guys an update, let you know what's been going on, why I haven't been posting in a while. Thank you so much to everybody who has reached out to me to check up on me. That truly means the world. I plan to start posting a lot more consistently again. So I will see you guys.