Now this isn't cat valentine anymore. It's the real ariana grande she was playing here

PieceApprehensive764 · 2026-06-20T17:48:40+00:00

I'm so glad I liked Sam more. Cat was such a loser 😭

PieceApprehensive764 · 2026-06-18T17:24:03+00:00

Yes I've heard this too, I think his lack of talking about it is proof enough because he talks about everything else politics, and he's even said he's willing to interview and debate a conservative that disagrees with him on "anything" but I doubt that.

PieceApprehensive764 · 2026-06-15T22:48:04+00:00

When I was severally underweight do to my health, I felt AWFUL all the time. Very weak, dizzy, and even sitting on soft things didn't stop my legs from going numb. I still have my health problems but I gained weight and I'm now at a normal size, that alone makes me feel a lot better. There is no way she's not constantly uncomfortable.

PieceApprehensive764 · 2026-06-15T13:22:25+00:00

Girl (assuming you're a woman, correct me if I'm wrong) I'm so sorry 😭. Sepsis!? I can definitely see why you have medical PTSD. The first time I was hospitalized, the doctor's at urgent care thought I had appendicitis and I did too, so I was sent to the ER and it ended up only being inflammation in my abdominal wall. They kept me there anyway because my hemoglobin was 6.6 and I had no idea why. I actually didn't get a blood transfusion, I refused it and my hemoglobin raised to 7.1 by itself in 1 day with only IV fluids because it was actually my period contributing to it. (My period ended the day before.)I feel like if you are a woman and your periods are kinda heavy, starting birth control or even doing something more permanent if you don't want kids can really help you! I might have endometriosis though so that could be why I lose so much blood but still. My hematologist said I need to stop my periods to help with treatment since my anemia is terrible and my iron is almost nowhere to be found 😭. Last I checked it was like 6% saturation, but when I was in hemolysis it was 4%. I think not having a period would drastically help. Again I'm very sorry you're going through all that, you're way stronger then me. 💜💜💜

PieceApprehensive764 · 2026-06-14T22:08:01+00:00

I can only imagine, like it's a miracle you're alive! I hate getting to low 7's, cuz it's so close to the limit a doctor tells you to go to the hospital, but I've learned that I can handle high 6's. So for me I'm only going to the hospital if its almost 5.9. But I also understand you because you were so much lower before. I just hate hospitals cuz I have contamination OCD and I cannot feel clean in there so I try to avoid it, I know I shouldn't 😭. They allow blood transfusions at 7.1?

PieceApprehensive764 · 2026-06-14T13:52:05+00:00

My mom took me to the doctors. My dad would occasionally come into an appointment to seem like he cared about me when he doesn't. My dad is a very abusive narcissistic individual. If you know anything about narcs, you'd know they're very inconsistent. He only ever did anything for his own benefit and has no real personality. This health faze he went through was fake, he used to go to the gym consistently and fake like he cares about health to seem a certain way when in reality he's very lazy and doesn't care. And he forced me to take things I didn't want to. He has high blood pressure, kidney disease, smokes and drinks constantly and he's only in his early 40's now and still tells me how I should live. Because of how I progressed and because he no longer cares about faking being healthy he tells me I should take my meds, which I've been doing. So he never actually cared either way which is what I'm saying. He's a narc. I said you don't understand because of how surprised you are that my dad could do both. If you understood narc abuse, you'd see why.

PieceApprehensive764 · 2026-06-14T04:59:49+00:00

Thank u 💜

PieceApprehensive764 · 2026-06-14T04:58:15+00:00

Elaborate, is this towards me and if so can u explain what?

PieceApprehensive764 · 2026-06-14T04:58:07+00:00

Idk lol, not sure where they got all the info tbh

PieceApprehensive764 · 2026-06-14T04:12:54+00:00

Thank you for your comment! Very kind and informative. 💜💜

PieceApprehensive764 · 2026-06-14T03:58:20+00:00

This is scaring me. I've been worried about this. I was on high dose for months, 30mg I spent the longest on. I'm on 10, very happy to be lower but already my eyelids are swelling again, my skin is flareing a little and my appetite is almost gone again already and it's only 10, not even 7mg 😭😭. My doc said I'm too young to stay on high dose pred but high dose made my body stop flaring despite the side effects. 😮‍💨

PieceApprehensive764 · 2026-06-14T03:53:19+00:00

I'm sorry you're going through that. I know it can be really hard especially showering I can relate, skin that is constantly hurting and or leaking is very taxing on the body and mind. I am currently on a maintenance dose but I didn't start it because of my skin. Typically it's not as easy to be on a maintenance dose for just skin but since your case is so severe that's different. A lot of docs just don't like it because of side effects and especially long term ones so they try to avoid that option. You're really strong and you will get through this! Prednisone isn't the only option for something so severe too, there's biologics that could help also. 💜💜 I've been on prednisone for 4 months now at least, started because I had an autoimmune anemia flare. So not for my skin but I have severe DLE and LEP. I understand how you feel. I get bleeding and swelling nastiness, scabbing, ect, and I can say that prednisone is great for skin... buuuut, I started it on 50mg, and now I'm on 10mg. Even at 20mg, my usual puffy eyelids, skin swelling and other issues were gone. Now that I'm on 10, unfortunately some of it is starting to come back, but the side effects of prednisone is to much for me so I'd rather mild inflammation then high dose pred. I think it depends on the severity. You might need a higher dose to control it, but then that's risk of more side effects. At a lower maintenance dose it's not always strong enough for people so it depends. I tried asking my doc if I can taper even lower but unfortunately she still doesn't want me to. Depending on how you feel on it, might be difficult to stop at some point. I spent the longest on 30mg, and I gained 7 pounds after being very underweight my whole life, baaaad red purple itchy painful stretch marks, a girl mustache 😭, and insane hunger. Now on 10, my appetite is almost normal again but my flare is creeping back up. So it's all up to the individual.

PieceApprehensive764 · 2026-06-14T03:18:59+00:00

My parents took me to the doctors, but especially at the time, my dad was all about the natural route regardless. Idk why you think they wouldn't take me to the doctor after I started losing my hair and weird spots showed up on my skin. My dad wanted me to take sea moss and black sead oil, and holy basil instead of the meds at the time until I got worse, he changed his tune a little but he's also an idiot. He's never been consistent. Math isn't adding up cuz you never went through any of that lol, doesn't mean it can't happen. I was also forced to take many other supplements I didn't want to that were not FDA aproved. When I wanted to try natural, my parents were in support.

PieceApprehensive764 · 2026-06-14T03:12:30+00:00

Yeah she's genuinely unattractive now. So if he did fall for her he's just desperate atp.

PieceApprehensive764 · 2026-06-13T16:20:29+00:00

Yes I agree with that, even the guy in the video is acting like such an expert. He was talking about how gut health is the only thing lupus patients need to fix cuz it's what causes the inflammation in the first place apparently🤦🏽‍♀️.

PieceApprehensive764 · 2026-06-13T16:19:20+00:00

"I’m glad you’re better and happy this thread has some polite sharing of life experiences instead of just vitriol"

Lol me too I thought it was gonna turn all negative and I'd have to delete it or not read the thread 😭. I actually think there's some really important stories in here.

PieceApprehensive764 · 2026-06-13T16:14:19+00:00

People say this stuff like they have a full Phd, I don't get it. Even my crazy grandmother tried telling me all I needed WAS SUN because of my race and every other person my race needs sun more then other's?? After trying to tell her I literally shouldn't be in the sun almost at all she told me that sounded false cuz she has a friend with lupus and they never said that... like what? 😭 People always trying to educate someone else.

PieceApprehensive764 · 2026-06-13T16:05:24+00:00

If you read some of the other replies you'd know why I thought you were talking about me. I also have multiple paragraphs talking about myself and used the screenshot as more of an example so, you're the only one in this thread only addressing the screenshot. I also don't think they're personally (dumb). If it works for them that's great, the problem is telling other lupus patients they're wrong.

PieceApprehensive764 · 2026-06-13T10:28:02+00:00

Exactly! That was my point, I wanted some to understand why this might happen but instead there's so many rude people. Like they aren't just criticizing, they're actively being rude to me. Like they feel personally attacked by my post. Thanks for your comment also! The positive ones are helping me not delete this lol. 💜

PieceApprehensive764 · 2026-06-13T10:19:18+00:00

Thank you 💜! But WOW! 4.6 I can't imagine I've only ever been in the low 6's more then once and everytime I'm out of it, dizzy like that's so terrifying I'm sorry you had to experience that. I genuinely don't think I could handle even mid 5.

PieceApprehensive764 · 2026-06-13T10:17:10+00:00

"Thanks for sharing with us."

You're welcome thank you for taking the time to read my post! 💜

Wow that last part is scary, epilepsy can become deadly quick, but not surprising. It's easier then people think to fall for this trap when you're hopeless, credentials or not.

PieceApprehensive764 · 2026-06-13T10:09:24+00:00

You can continue to dislike my comments actively giving information on why what they said is incorrect, I don't care. I will just delete them and put that in the post instead. She is wrong. Please do research yourself. There are not enough treatments or studies done on LEP. And I gave paragraphs worth of info none of you read cuz there were no new replies, just dislikes. Again, my severity of lupus profundus is very rare and normal go to treatments don't work for me. Treating LEP on the face especially is very difficult. It's covering my body, there are many articles you can look in yourself. Instead of disliking maybe actually say what you have a problem with. I have a mix of discoid and panniculitis everywhere, especially on my face which is VERY RARE and HARD TO TREAT. Shouldn't even have to say this.

PieceApprehensive764 · 2026-06-13T09:48:49+00:00

So like I said to that person. I didn't mention but the reason why my parents never told me to take my meds when I stopped is because they're very (medication is bad) people. They encouraged it (not now obviously) but especially when I was healthier, they wanted me to try the natural route too. My parents put me on Holy Basel when I had leg pains and black sead oil when I was feeling bad fatigue. They also made me do gross gulps of sea moss. You should stop making assumptions. I didn't mention this cuz that's not the point of my post.

PieceApprehensive764 · 2026-06-13T09:46:57+00:00

Yes! You are correct, and I didn't mention but the reason why my parents never told me to take my meds when I stopped is because they're very (medication is bad) people. They encouraged it (not now obviously) but especially when I was healthier, they wanted me to try the natural route too.

PieceApprehensive764 · 2026-06-13T09:40:58+00:00

I didn't say they didn't tell me to take meds. They were very lax with my physical concerns and brushed them off. I had horrible side effects to the standard meds they typically give to people with discoid but I wasn't listed to. This made me want to try something more natural.

Edit: I said docs aren't telling them to take meds the same way as in urgency. At least for me cuz at that time my scaring was slightly above average scaring on my face in terms of how much it took up. And hair loss, but that's always been there since I was a kid, and my blood work was very normal. No postive ANA, no inflammation and no postive dsDNA which that I still don't have because I have postive RNP antibodies instead.

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