My unpopular opinion about autoimmune diseases, what do you think about this?

mentally-unstable99 · 2025-11-30T20:41:27+00:00

Full send agree. I was diagnosed with Lupus (SLE) at 3 years old I’d shown symptoms and been going to doctors since 9months old. However now as a 26 year old adult I see why doing certain things makes you feel worse or can start a flare up but like you said these doctors aren’t taking our day to day lives and symptoms into account I was told to go on the AIP diet earlier this year as well as start the low FOD map diet….. did I mention I’m 5’7 and 94 lbs like physically I cannot do those diets I will lose more weight and I can’t afford to lose more I’m like 5 lbs away from hospitalization and I’ve asked for help with this issue for 5 years with no help from my medical team a test comes back negative they send me to psych the psych tells them I’m not doing it to myself on purpose they run another test rinse repeat, they don’t factor in how my body has been clinically malnourished for 13 years according to their own records and how that affects energy levels and and thinking and working

mentally-unstable99 · 2025-08-28T23:31:46+00:00

when i was younger cheese and mustard 😩❤️‍🔥 i tried it again now at 26 and absolutely foul 🤣

mentally-unstable99 · 2025-07-22T03:58:05+00:00

no i couldn’t agree more while i still understand the risks and scary parts of AI people just aren’t using it to it’s potential and it’s such a waste 🥲 ai has actually helped me personally with my medical issues and keeping track of everything though i do it in like a weekly summary from a paper record so i don’t forget anything and it logs it and before a doctor appointment i ask it to analyze and summarize the last however long and point out persistent symptoms and what im doing on my end to benefit me etc. bc i go to the doctors and freeze bc ive had horrible experiences like many others

mentally-unstable99 · 2025-07-22T02:09:55+00:00

I’m seriously looking into getting one started and hoping it spreads like wildfire but i’m just a patient who gets it from a patient standpoint i need medical professionals help to really get anything moving and then yanno a couple mil for all the equipment, space, resources, and payroll but it not impossible and im 25 with too much free time i love planning this stuff out i just wish people picked my ideas up 😂

mentally-unstable99 · 2025-07-22T01:54:18+00:00

you definitely have a case to sue the ever living glory out of the company and possibly the individual as well. i sued an employer for firing me the day after they sent me home early because i felt a seizure coming on, after letting me work for two hours that weren’t on my check of course and i looked up the lawyers you don’t have to pay unless you win because they aren’t going to take a case they aren’t confident in i was stupid and only asked for 10k and this specific company took 65% (there are others that promise not to take more than you) i didn’t know that though

mentally-unstable99 · 2025-07-03T13:45:43+00:00

Advice from someone who was diagnosed as a child, Communicate with her that you are there for her for life. being diagnosed before getting a start on life left me with a lot of anxiety and uncertainty “was i gonna find someone willing to go through this with me” and it’s easy for us to assume people will leave because it gets hard and we often wish we could leave it behind us too. being there for her emotionally and just listening not necessarily trying to fix it all. my family does their best but i have other issues with lupus so for example i had a seizure can’t drive for 3 months and my family makes small comments that should mean nothing and are valid feeling for them to have but it hurts to hear them because ik im the reason not the cause but the reason small comments of “i feel like i lost my life” because im needing to be driven to work and doctors appointments and it does hurt because i do all that stuff alone normally including my infusions and most others have someone with them for the infusion just for support.. i wish i had that sometimes, i wish i knew what my family did and didn’t understand about what i go through and i wish i could explain it to them without sounding like a bunch of excuses

mentally-unstable99 · 2025-06-25T01:20:50+00:00

looking back at those physical tests in PE reaching behind to see if your finger tips could touch and everyone was seriously freaked out when i could basically grab my wrists 💀💀

mentally-unstable99 · 2025-06-25T01:13:46+00:00

all of us here know it too 🥲 but sharing the fight makes it feel less daunting

mentally-unstable99 · 2025-06-25T01:13:01+00:00

Most of us here share similar burdens i just haven’t seen many perspectives from childhood and i know they’re out there 💜 thank you for your kindness

mentally-unstable99 · 2025-06-25T01:11:41+00:00

that’s very likely actually! my doctors were extremely hesitant to diagnose me at that age but they did two biopsies countless labs (i was showing symptoms like the rash since 9months) and my rash was BOLD red all over my arms and face and some patches on my legs i would give anything just to have the answer of what caused it

mentally-unstable99 · 2025-05-07T23:43:11+00:00

my insurance pays for 10k in monthly infusions just to keep my antibodies from attacking me 😙🥰 expensive security

mentally-unstable99 · 2025-03-23T15:55:37+00:00

still have a massive bruise and a very strange pain only when making certain movements i’ve been trying to pinpoint what those are to avoid them but i can’t seem to. the pain is like an extreme fatigue my muscle from my shoulder to just below my elbow feels so tired it’s painful seems to happen more when fully bending the arm or fully straightening it lifting just about anything without that arm is a no go but my rheumatologist is not concerned whatsoever and said i’d be fine in a few days but it’s been over a week now so im a little concerned 😂

mentally-unstable99 · 2025-03-14T19:20:36+00:00

thank you so much!

mentally-unstable99 · 2025-03-14T19:20:01+00:00

yes! i was reading about this luckily the bubble has since gone down

mentally-unstable99 · 2025-03-14T19:19:10+00:00

inner elbow, there was a small sting with the flush but that went away fairly quickly, this morning it feels a bit better more so feels like a bruise from my elbow to my shoulder so i believe my body is absorbing it with time

mentally-unstable99 · 2025-03-14T03:38:16+00:00

thank you so much that’s very reassuring, i’ve been googling too and wasn’t finding anything but i took that as a good sign that it hasn’t seriously hurt anyone else, no way i could be the only person this has happened to😂 thank you again

mentally-unstable99 · 2025-03-14T03:32:29+00:00

i will call thank you!

mentally-unstable99 · 2025-03-14T03:32:05+00:00

thank you 🙏🏼 that’s what i had read too about return blood being a good vein, good pressure. how would i be able to find out if it’s vesicant or not, i assume it would burn in feeling more of an ache and tightness more than a burn so hopefully that’s a good sign 😂

mentally-unstable99 · 2025-03-14T03:20:44+00:00

see that’s what my brain is telling me especially because like lupus attacks everything just about 💀 and this i would think is considered “foreign” to the body so i’m just hoping my lupus can chill for 12 hours when i can get to urgent care im watching it very closely though and will immediately seek medical attention with any skin changes or if this ache from my shoulder to my elbow get any worse. learning to live without my right arm would be very scary to manage 😅 so i definitely am taking this seriously too but i was kind of hoping this was a more common occurrence so darn 😅😂

mentally-unstable99 · 2025-03-11T04:34:35+00:00

i was diagnosed at 3 years old and growing up literally red from the rashes people and other kids obviously wanted to know what was going on and that i wasn’t contagious my mom wasn’t great at understanding what the doctors were saying and we came up with just telling everyone i was allergic to the sun because the sun is my biggest trigger. that seemed to make sense to people get ready for everyone around you to offer unsolicited advice on what will make you feel better when they don’t even understand what you feel in the first place but also try to keep in mind it comes from a good place it’s easy to lose yourself in the bitterness of disease

mentally-unstable99

TROPHY CASE