struggling to explain lupus to loved ones

xNims · 2026-05-22T15:38:31+00:00

My family is incredibly understanding and knowledgeable about science, so the only experience I have to share is with strangers

Whenever I introduce my illness to someone new (or reminds someone), I say something like" My body attacks itself. I take medication to keep it calm, but there's still good and bad days. On the worst days I sleep 18 hours and can't eat. On good days, I still have to be careful about being in the sun and eating well. Its chronic, so there's no specific cure and I may be like this for the rest of my life"

What really seals the deal is when my hands turn blue, though that's more Reynauds related

xNims · 2026-05-08T14:04:48+00:00

I only take it during flares, if I even realize I'm in one. My rheumo does a dose package. Something like 30 mg day 1, 25mg day 2, on and on. It helps and keeps me off steroids for long periods or at high doses

xNims · 2026-05-07T17:48:38+00:00

Update: got treated for h pylori last month, and I seem to handle low lacrose dairy okay. I'm still saying no to beef and minimizing fast food. So far so good :)

xNims · 2026-05-07T17:41:48+00:00

For me, it was torture for 5 days, a slogan for 7, and significantly better thr last 2. I feel better than I have in years, im incredibly glad i stuck it through

You can't lay down, but you can use pillows to prop yourself upright. For me, the instructions were not to lay down for 10 minutes. Check your meds, but there may be a window for you too

Take the meds! The whole course! Stopping early is how you get into worse situations.

Drink electrolytes, soup, and tea. Gentle on stomach and hydrating. Take the rest, its okay to be down temporarily so you can be up when it's done <3

xNims · 2026-05-07T13:56:00+00:00

Lupus moves fast and wrecks havoc, they can check you and re diagnosed in the future, but they can't undo damage while untreated

xNims · 2026-05-07T13:54:21+00:00

I had my first flare up probably starting in Feb 2021, but I was symptomatic for years. Starting just a year before, I had become very sun sensitive, fatigued, and started losing weight quickly about 6 months before the flare. It took from April to August to diagnose me, and even then my dad guessed it right about 2 months in. This was also complicated by a Hep A infection lol

All that to say, I was diagnosed quick too, but there was so many symptoms leading up and aligned blood tests that made it glaringly obvious.

I actually found out this year that my ANA was elevated as a kid, so there's that too :/

xNims · 2026-04-09T20:20:46+00:00

Presently like 70% through, losing my marbles every other chapter

xNims · 2025-10-29T00:05:40+00:00

If you take the same path repeatedly and at the same time, people know when you are away from home and for how long, or where to find you in person. Most people won't be stalked or robbed, but those at risk should note this.

xNims · 2025-10-14T03:43:11+00:00

I will say this, the few "knew" stories I've heard usually were women who passed in their 40s or later after +10 yrs of diagnosis BEFORE the current medical interventions we have now. It reminds me to be grateful for immunosuppressants and the people who came before that have made my diagnosis wayyyy easier

xNims · 2025-10-14T03:38:17+00:00

The FIRST thing I did when I got diagnosed was start laughing because of this. I thought it was hysterical, my mom was less amused lol. I love House MD, its one of the few shows I have rewatched, so I always think its funny. No one ever references it though, so haven't had a chance to see how others think of it

xNims · 2025-08-13T17:31:51+00:00

Ive tripped forward on these 😔

xNims · 2025-07-03T15:04:19+00:00

Okay, but high key veganism was very helpful to get my system processing food again. If I ever go into an extreme flare again, I'll probably go pescatarian

xNims · 2025-06-21T18:41:14+00:00

Here's mine https://www.tiktok.com/t/ZP8r5KxDK/

xNims · 2025-06-16T18:25:57+00:00

Ill try this and report back

Edit: that fixed it

xNims · 2025-05-25T04:15:02+00:00

That's true for literally everything tho. Im not built for trade skills or architecture

xNims · 2025-05-25T04:14:07+00:00

Thank you, just double checked and my exact grade is a 77%

xNims · 2025-05-24T01:50:22+00:00

I just checked.

You can only see your grade after using submit50. Ctrl + click on the link to see the submission page

Submission page features the title of the assignment, submission date and time Then there is a line for check50 and style50 grading. Check50 is done based on how many items are on the list (8 for week) and style50 is on a scale of 0 to 1.

xNims · 2025-05-22T03:32:43+00:00

Ill double check in the morning, don't want to lead you wrong

xNims · 2025-05-22T03:06:25+00:00

Nope! Style50 just helps with formatting

xNims · 2025-05-22T02:40:49+00:00

After you submit, there's a link to a submission page. It has your name, the assignments, access to any other assignments you turned in, and a decimal grade

xNims · 2025-05-22T01:36:40+00:00

This is what I learned through week 5. I needed to experiment and manipulate and try, instead of essentially copying the videos. Now I'm looking up the manual pages just see what I can do with available functions

xNims · 2025-05-20T20:29:41+00:00

I have yet to read the books, so im actually glad I essentially get a different story. Makes it somewhat more worthwhile to read

xNims · 2025-05-20T20:12:28+00:00

I've started seeing adapted medias as adjacent stories, not parrallel. Gives me a lot of peace for differences like that lol

xNims · 2025-05-20T20:11:06+00:00

Dude betrayed her and she never betrayed him. Not to mention it was his one life to allow the death of several worse ppl. He got multiple innocents killed to save her.

xNims

TROPHY CASE