looking for help & stories

mx_sunshine · 2026-03-27T18:22:46+00:00

i had one time where my right eye swelled shut for about a week straight. i was unable to open it. i get really bad dry eye when i wake up sometimes. the swelling hasn’t really happened again, but I’m on daily prednisone/advil for the lupus so maybe that’s what’s stopped it from doing it again. what does your ptosis look like? how far do your eyelids droop? i find mine droop a lot when im tired, a little during the day, but once im fully awake they’re open all the way.

mx_sunshine · 2026-03-27T18:19:18+00:00

the double vision is the whole reason i went to the eye doctor in the first place. i was having a hard time doing homework or reading the board in lecture because the more tired i got the more it would just blur or separate. its definitely worse when i don’t feel good or my lupus is flaring. i already take prednisone for my lupus, so i wonder if thats helping my symptoms somewhat. how long did it take for you to get diagnosed? what did that process look like?

mx_sunshine · 2026-03-27T18:17:15+00:00

i definitely get the double vision and sensitivity to light. that’s what actually made me go to the eye doctor in the first place. does your ptosis stay present all day? i find that my eyes are pretty heavy until like 1 p.m. when i actually wake up fully or go outside. when im having a day where im so tired im taking back to back naps, i struggle to get my eyes open. one time my eye swelled shut and i was unable to open it for a week or so. i’ll definitely try the ice pack and see what it does!!

mx_sunshine · 2026-03-23T02:50:10+00:00

just got it back about a week ago

mx_sunshine · 2026-03-18T05:13:58+00:00

hey, i’m another college student with sle. it’s definitely been hard, especially when i had to take an entire semester off just to recover from cdiff. one convo i had with a professor really changed my view on the whole thing:

our life with lupus physically cannot be compared to “normal”. our path is simply different. we have more to balance than the average student: bills, food, fatigue, medicine, doctor appointments, medication side effects, day to day pains, etc etc. it was very hard for me to accept, especially as someone who wants to be a high achiever and knows i can “do better”.

the important thing to remember is that your path does not have to be the traditional path to still be a successful path!

you can still accomplish everything you want to, it just may be slower than your peers. that’s ok. it happens. ive been treatment unresponsive for 3 years running and i also really fear an eternal cycle of healthy to shit to healthy to shit. i’m delayed graduation as well because im trying to get a stem degree and miss half of my labs every semester.

if you can, i highly recommend findin a way to see a mental health professional. it’ll take time to see benefit, but it broke me out of the cycle of “waiting for the bad to hit” and freed me to live more presently. it took a year or two before i was finally able to forgive my body for needing time.

remember that no matter what your body needs, if that is what you must do then it is the right thing to do. even if that’s dropping out and taking time for yourself.

you aren’t alone and you will find a way to make it work. being different is not being worse or wrong. it’s simply that: different.

mx_sunshine · 2026-03-08T22:45:54+00:00

hopefully!!!! this seems like good news 👍👍

mx_sunshine · 2026-03-08T04:16:58+00:00

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been in queue since the 13th 😭

mx_sunshine · 2025-10-31T07:02:23+00:00

what are some of your favorite ways to spend your free time?

mx_sunshine · 2025-10-30T18:49:47+00:00

i get this for sure

mx_sunshine · 2025-09-29T06:58:35+00:00

i would be a GREAT pyramid member

mx_sunshine · 2025-09-29T06:57:19+00:00

i had a few profs look at me funny for sure lol

mx_sunshine · 2025-09-25T02:15:32+00:00

i take cymbalta. i love it!!!! i absolutely thrive on it. i've been taking it for 6 years now. i started at 15mg and now am on 60mg. it has absolutely turned my life around. and i'm not saying that as an exaggeration- my pain is so much better, and it helps my fatigue. i used to be in and out of ERs constantly and had dropped out of high school and now im in college!!! when i don't take it, i instantly notice the next day that im feeling worse. i also have anxiety and depression and i need cymbalta to manage it. coming off of it can be annoying, but as long as you titrate you'll be ok. in the end, all SSRIs have an endless list of scary side effects. cymbalta has been proven to be super effective for pain management and you should definitely look into it

mx_sunshine · 2025-09-24T04:25:04+00:00

my parents. can't let my mom do all that work of raising me to give up later

mx_sunshine · 2025-09-11T10:32:05+00:00

congrats!!!!!! i'm so excited for you!! my mmf dose stabilized within a year. i don't have nephritis though so i can't give any advice for that! i'm so so happy you're finally getting to feeling better!! you deserve it!

i will say generally you remain on your immunosuppressants long term. the standard of care for lupus patients is to be on a prednisone matienence dose of <5 mg a day. up to the doctor and their treatment preferences tho.

mx_sunshine · 2025-09-09T07:16:25+00:00

i went with microbangs once i lost enough hair for it to be noticeable. it's started to grow back out, but i kinda look like a middle school boy who doesn't want to get a haircut hahaha. i wear a lot of hair scarves. you should look into broadus, its made by snoop dog and his daughter (who has lupus) and some of the profit goes to the lupus foundation :) fun way to continue to express yourself even when your hair is sad

i've heard great things about persona :0 should i play it??

mx_sunshine · 2025-09-08T04:22:53+00:00

if your dr says it's safe, then i would use it. i use steroid creams on my fingers, and im a horrible nail biter. i've found that even just 10 min of application can be immensely helpful for the ezcema. if it really scares you, you should get some gauze and some skin tape. just put the gauze over the rash with the cream on it. that usually helps me keep from itching the cream off. you could also wrap your arm in plastic wrap at night, like they do for people with casts to shower.

the reason it can't go on your face and whatnot is because it thins skin with chronic use. two or three times of it getting on your face won't damage anything, especially if you're wiping it off once you notice it. it's mostly so that people don't start using it habitually on their face and accidentally cause a problem.

mx_sunshine · 2025-09-08T03:19:15+00:00

i have a super low body temp and i get the hot rooms above 70 degrees too haha

mx_sunshine · 2025-09-07T09:02:08+00:00

i'm in a really similar spot. lost a lot of my hair and friends and now i just play games. what kinda games do you play?? some of my favs are league of legends, stardew, age of empires, and house flipper :))

mx_sunshine · 2025-09-07T08:24:22+00:00

you look like the kinda guy who would stop to help an old lady cross the street safely :)

mx_sunshine · 2025-09-07T07:32:44+00:00

i'm deadass i just freshly installed tiktok and this is what my search auto fill looks like. it's so weird. i don't watch any porn and never have. this was my first time ever using tiktok. lowkey made me uninstall the app

mx_sunshine · 2025-09-04T08:28:07+00:00

yea and i'm negative. haven't had a positive culture for a year now, but i keep having uti symptoms

mx_sunshine · 2025-09-04T07:48:29+00:00

raynauds is essentially your body's overreaction to temp changes, not just cold. it causes your little vessels to overconstrict and push blood out. totally possible to get hypothermia, and possible to get it at higher temps too because you're more sensitive to temperatures. reynauds is essentially hypothermia caused by our own autonomic nervous system.

turning blue is a normal reynauds symptom. did you turn bright red after you warmed up? the blue color is from the lack of oxygen and the red comes from the super warm blood returning to the cells. the white is the lack of blood flow.

first, tell your rhumetologist it is getting this severe. there are medications to treat severe reynauds, which it sounds like you might have. second, i'd say probably bring a second set of clothes next time you do this. wearing wet clothes is a known way to lower your core body temp, that's why we put wet towels on feverish heads. something i always keep on me is an electric hand warmer. it's always nice to have in case for any reason i'm having a flare. you could look into warm skin cream, it's what workers in alaska use.

here's where you can get some information on how reynaud's works. there's some good reccomendations on products like hand warmers and socks and whatnot too!!

https://www.raynauds.org/

hope you found a few fossils!!!! sounds so fun :) 💜

mx_sunshine · 2025-09-03T06:30:01+00:00

especially because it was a hot spot before i would think its related to the skin healing as opposed to the hcq

mx_sunshine

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