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I’ve been having the same issues, never feeling hungry and only eating a tiny portion of dinner and a snack or two per day. My rheum recommended meal replacement shakes to get the nutrients I need, the plus calories or plus protein ones more specifically. Hoping you feel better and good luck!

Been there, luckily where I live it’s illegal to fire someone due to a disability, but my manager seems to be trying a different approach by attempting to make me quit, my shifts have been cut down to one a month and they never let me do the job that works best for me even after they agreed to it, it’s crazy. I’ve been told I’m “too young” to need accommodations and to be disabled even publicly embarrassed by a manager that wasn’t even mine, she yelled at me for 10 minutes in front of customers because I sat down needing a quick break.

Because you aren’t on the correct meds…

Chronic pain doesn’t just go away with “the right meds” considering it’s chronic..meds just help control it. They’re probably on the best ones for them to help manage their pain, you don’t know anything about their medical history to be saying this

We give liquid prednisone to kiddos who don’t like to swallow pills. It works the same.

I do have difficulty swallowing my other medications but it’s very rarely and they’re much bigger, with the prednisone it happens nearly every time i take it, I don’t have trouble swallowing food or have sjorgens so my doctor has basically given up with looking into it because he’s never seen this issue

It makes me feel a bit mad seeing so many people spreading misinformation about the disease just because they don’t like her. I seen comments saying kidney problems aren’t common with lupus and she caused her issues by drinking and doing coke, when it’s one of the main major organs lupus attacks and 15-20% of people with it need either dialysis or a transplant.

The misinformation just adds salt to the wound. I think that with so many people having autoimmune issues, they don’t realize what a serious illness this is…when my sister was diagnosed in her back in the 90s, we thought she was going to die. And when I was diagnosed at 51, my first emotion was fear and then gratitude for all the new meds that didn’t exist back then. There are other illnesses that a celebrity could use to “cover” substance issues extreme exhaustion—lupus is too weird and complicated to fake.

I keep seeing people say Lyme disease is the disease celebrities use to cover up substance use because it seems like so many celebrities have it. I just find it strange how they use something like that to cover up because then people just end up spreading misinformation and also saying ill celebrities are just faking to hide addiction.

What is MDD

“Major depression disorder” I’m pretty sure

How long do these girls think they can do this for? 30's? 40's? When you are fighting illness as a kid it is actually inspiring, when you get older, people don't care and see you as the annoying old lady complaining about her last hip replacement. The sympathy fades, and so does the attention.

It especially fades faster when they complain about every little thing imaginable like some of these munchies do. They try so hard to portray chronic illnesses but fail to acknowledge the one thing about it, pains happen constantly it’s not always something you need to post about and announce to the world.

Agree, I don’t have TikTok but would be interested to see if any of the accounts continuing to “support” her in the comments are Sickstagram type accounts with dubious stories of their own. I struggle to believe many legitimate unwell followers would not have spotted that there is something suspicious about her story by now, as most of them have likely never had to “beg” for unnecessary accessories. The munchie followers, however, can likely align themselves very well with Kaya’s content and are enjoying the opportunity to learnt about how to best manipulate and exploit HCPs.

A lot of people in her comments are the “Sickstagram” type accounts if not all, i’ve even seen children about 12-13 asking her for medical advice on how to get stuff or what meds to ask for, it’s crazy these kids are being influenced to do stuff like that because they watch her instead of just listening to their medical team about what’s best for them.

I genuinely wonder how they allow her to drink energy drinks with all the problems she has..i mean aren’t they super bad for you and speed up your heart rate a bit?

My highest is 6 taken at once so not much I couldn’t even imagine 14 at once. but during my diagnosis process i was getting 4 tubes taken 5 times a day for 2 weeks straight, near the end they couldn’t even get anymore blood out almost like my veins were empty, my arms and hands were black and blue it was horrible

I am curious how many of us who experience this have had covid, given the time frame most are mentioning. I have been unable to maintain a consistent weight and am unintentionally lbs less than I was in 2020. I assumed it was caused by my bad reaction to cellcept, but reading through this, I can't help but wonder....

I had covid once back in November but i’ve been having these issues months prior, since about April or May, my docs thought it was cellcept and switched the brand and I had no change. It’s so weird how it just randomly started

I have the same problem. I also haven't mentioned it to anyone. Maybe we should all try to get help finding the answer and then report back to each other. I have to use THC to eat at all. I do take Omeprazole daily. My diet is really healthy and balanced. I've started making myself egg drop soup most mornings for breakfast. Sometimes with plain Jasmine rice. I can't hold much rice, but the soup has been really helpful lately. Especially with how crazy vitamin deficient I am.

I’ve never heard about egg drop soup, I’ll have to look that up, it sounds very interesting and good.

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i’m unsure why you mentioned this when it doesn’t have anything to do with what the op was talking about? Lupus nephritis is a common thing in people with lupus and has nothing to do with the vax.

I'm glad too. I was being closely watched due to a new treatment and high activity. It's been a really hard past couple of months.

Mine have completely recovered since then, I was put on a diet of basically no salt and limiting how much I drink per day to reduce adding more stress(not sure which word to use) on my kidneys. I’ve also been put on a kidney transplant medication/strong immunosuppressant which i’ll have to take for a few years. But i’ve had the few odd times where i’ll have a bit of protein in the urine but it clears up.

Internet stranger hugs. And, I get it. I have lupus and Ra (among a list of things) and everytime I go in to see my rheumatologist I swear I spend 80% of the time re-explaining everything from the last appointment and what I need from him because he can't pull his head out of his ass enough to read his notes (if he even takes them.) Sure he prescribes what I need and I've found a decent groove with my meds that let me function (that I pretty much requested, and fought for... tf is the point of his degree?), but every freaking time, we have to play this game! How hard is it for them to just do their damn job and be knowledgeable about their patient's particular cases? I'd have zero problem waiting an extra 10-30 min while he reviews his notes so I don't spend my appointment banging my head against the wall. They just DON'T listen and continue to collect their copay. It's utter garbage. I'd switch doctors, but the idea of having to go through this with another pompous asshat who wants to reinvent the wheel, give unhelpful suggestions like "move around more", and screw up my progress is the last thing I need. Listening to the patient really isn't that hard, yet here all these doctors are, with ears full of potatoes and an unwillingness to give listening a whirl. It's infuriating.

It’s annoying to realize they don’t even listen to you most of the time, the one I have now laughed at me and said “well maybe if you exercised more” because I said I was experiencing a lot of joint inflammation, which is absolutely unacceptable and unprofessional. I’ve also experienced being told misinformation because they have no idea what they’re talking about with some things.

Lot's of hugs to you.

I tried both specialized physio and just doing some simple exercises a physiotherapist recommended to me alone, both have made me just feel worse so I like to just stick to simple things like quick walks and casual stuff around the house to keep me moving throughout the day.

My rheum specializes in lupus or so she said, yet she had no idea what raynauds was or the malar rash

I used to have thick curly hair now it’s just wavy/straight and thin from hair loss, I’ve started using rosemary oil/water which has helped with the hair loss and it has helped me with dandruff and itchy scalp, I also like to stick to shampoos with less chemicals in them because they also contribute to the damage

I got diagnosed a year ago and am currently experiencing this as well, I have random days or weeks of swelling and pain even while on hydroxychloroquine and other anti inflammatory meds, i’ve been given steroids twice now and they only helped a little bit but improvement slowly came. The medication is to prevent it from becoming worse as i’ve been told by my rheum so as long as you’re taking it you should have more good days than bad days. But unfortunately this is what comes with RA, random days of pain and never knowing when it’ll go away.

I disagree. I am not argentinian and also didnt support Argentina and still think it was the most important save of football yet. Of course you can argue that all saves are equally important to win a match, but it doesnt take into account that when you let in a goal in the 60th minute, you still have enough time to come back to the game, while this save occured in the extra time of overtime in a world cup final. It could not have happened in a more important game, and it could not have happened in a later (=more important) stage of the game. If it went in, there would have been 0 time to change the result and Argentina would have lost the world cup at the spot. That's why it is the most important. Definitely far from being the most impressive, but that's not what we are talking about here. I feel like some people confuse these 2 things.

Yes but any save in the last minutes or deciding penalties of a final is just as important as this one.

Not even close as important

How so? it kept the score even to take it to penalties? If that shot went in France would’ve won. It’s literally both the same thing, saves in the final minutes to keep the score even to go to penalties.

Messi said he still going to play for his national team

Not in the next world cup though maybe Copa America

Keeping a tally on how many times American commentators say their names during the broadcast:

it’s obvious, i swear i’ve heard Messi’s name when it was two totally different countries playing

Well how can you not see a contact ? I guess you dont really know what contact means. Maybe youd want to say that you cant see a reason for a penalty there but there is contact.

He was already falling by the time there was any contact, he was midway down when the french players leg touched his

Where are you from that you don't mind how insufferable france gets after they win anything?

are you aware of how insufferable Argentinian fans and especially Messi fans will be if they win? They won’t shut up about it for the next decade

I'm from Brussels and live in an area that has around 10-15% of French people. They're plenty insufferable alright and I don't know a single person from Argentina.

Half of Argentinas fans aren’t even from Argentina, once they win you’ll see that. It’s mostly Messi fans from different countries. I’m not bandwagoning against Argentina because I do hope they win. But the fans will be far more insufferable than french fans, not just in person but in the media. Just the way people talk about Messi during this whole tournament is insufferable they act as if he’s the only one on the team and the only one in the tournament, the team rarely gets recognition.

Yeah but why Bruno Fernandez, a potuguese guy, is saying that? Its not like some random arabic guy that says “Hala Madrid” and “i love CR7” says it, its the main man of the portuguese team so they should feel the rivalry too.

Many people are saying that, lots of people believe the World cup this year is scripted for Argentina to win.

😳 what? Argentina is literally the South American Champion right now (Copa America 2021 over Brasil, in Brasil soil!) 35 matches without losing prior to WC. Won against Euro champions Italy (yeah a worse squad than the winners) 3-0 for an oficial international title. Thats why we are candidates. A script? We never heard that here lol. It must be the media. In fact our game vs NL was biased towards NL, this made Messi’s rage which is NEVER mad. FIFA for sure made it clear against NL they want us out. The referee is a La Liga referee which Messi hated and said it before the match indeed.

Yes it is in the media a lot that it’s scripted for Argentina to win, i’ve seen lots in the media saying it’s in favour for Messi to win this year.

As long as it's not Portugal.

Portugal would be a great win what’s wrong with that?

I take cellcept for about a year now, and it honestly helped me so much. I had stage 4 lupus nephritis and once I started taking cellcept my labs and symptoms improved fairly quick. For hair loss it did help with it considering the disease itself can cause hair loss as well. The only negative side affect i’ve had was nausea so I had to switch brands and since then I haven’t had a side effect.

I’m so happy for you! I saw your post about covid, how are you doing? I’m hoping you’re better 🙏 did you need to stop the cellcept while recovering?

I’m doing great thank you! I kept taking cellcept throughout having covid and throughout other colds or viruses i’ve had and luckily it didn’t make anything too bad. It does help keep lupus symptoms calm for me at least but it makes recovery take longer since it calms your immune system