this post was submitted on 16 Sep 2024
191 points (98.5% liked)

Ask Lemmy

27210 readers
2100 users here now

A Fediverse community for open-ended, thought provoking questions


Rules: (interactive)


1) Be nice and; have funDoxxing, trolling, sealioning, racism, and toxicity are not welcomed in AskLemmy. Remember what your mother said: if you can't say something nice, don't say anything at all. In addition, the site-wide Lemmy.world terms of service also apply here. Please familiarize yourself with them


2) All posts must end with a '?'This is sort of like Jeopardy. Please phrase all post titles in the form of a proper question ending with ?


3) No spamPlease do not flood the community with nonsense. Actual suspected spammers will be banned on site. No astroturfing.


4) NSFW is okay, within reasonJust remember to tag posts with either a content warning or a [NSFW] tag. Overtly sexual posts are not allowed, please direct them to either [email protected] or [email protected]. NSFW comments should be restricted to posts tagged [NSFW].


5) This is not a support community.
It is not a place for 'how do I?', type questions. If you have any questions regarding the site itself or would like to report a community, please direct them to Lemmy.world Support or email [email protected]. For other questions check our partnered communities list, or use the search function.


6) No US Politics.
Please don't post about current US Politics. If you need to do this, try [email protected] or [email protected]


Reminder: The terms of service apply here too.

Partnered Communities:

Tech Support

No Stupid Questions

You Should Know

Reddit

Jokes

Ask Ouija


Logo design credit goes to: tubbadu


founded 2 years ago
MODERATORS
 

I got a diagnosis today after trying to figure out what's wrong with me for twenty years. My grandmother died at a relatively young age of lupus complications and she had to end her whole career at 36 because she was so sick. I'm 27, and I am terrified I'm going to end up like her. Her quality of life was absolutely awful for the entire time I knew her. I don't want that for myself.

you are viewing a single comment's thread
view the rest of the comments
[–] The_v 27 points 3 months ago

First off, your rheumatologist is the most important doctor you will be dealing with. For some reason the field collects some odd ones with poor people skills. You may get lucky and find a good one right off the bat. However if the doctor seems to not be listening to you, understanding and explaining your symptoms, go for a second opinion or a third or a fourth opinion. It took my wife 5 different ones to finally find a good one. It's a 3 hour one waytrip to see him but it's worth it. We will likely be moving up closer to him in a few years.

Second be patient with the meds. It will likely take several tries to find something that works. However not too patient, waiting too long can make the disease progress further. However once the right cocktail is found you'll feel a bunch better, until you don't. Changing meds is common and normal no matter how long you have it.

Last, if your in the U.S. and have to deal with our shitty system, get ready to fight insurance. It will be a constant battle if you geton one of the criminally prices drugs. Just don't give up and eventually you will win. One drug refill took my 2 months of twice weekly calls to push it through.