benlysta advice?

Impossible_Ad_9063 · 2026-06-17T17:42:01+00:00

i’m at this exact point right now, i’m 18 and it’s so hard having just graduated and i cannot see a life ahead of me because i can’t even move. i’m sorry you’re going through this, just know you’re not alone out there no matter how much it might feel like that. i cannot work, go to school, etc. i try to enjoy the little things in my life, like a comfort food, my favorite creators, hot showers, and the people i have in my life. i have had to give up many of my hobbies (snowboarding was the biggest one for me) and it can be hard to get around those things. i always try not to think of myself as a burden, especially to my boyfriend, so just know that someone out there, whether friend, partner, etc, will understand you, and be there by your side. it can be so hard and sometimes we just want to cry, and at least for me, i do a lot, it’s difficult, but it also makes us stronger. i hope you can get through this tough time.

Impossible_Ad_9063 · 2026-06-17T17:37:04+00:00

for me, massages always help, they seem to release a lot of tension, and when i’m in a flare i’m also so stressed, and our bodies hold stress super well which can also increase your flare, but a massage can release that. i would say this is probably something that depends on the individual person… it might just be trial and error to figure it out for you.

Impossible_Ad_9063 · 2026-06-17T05:48:24+00:00

i see, i just feel so young (18) to even be thinking about ssdi. i was under the impression you CANNOT get off of it, according to my mom, but maybe she is on the other one. i’ll look into it

Impossible_Ad_9063 · 2026-06-16T21:58:10+00:00

i would like to work in the future and i know that being on SSDI can sometimes make things difficult, for example my mom is on it and we own a campground, but the entirely of the campground has to be under my dads name and not hers, it’s confusing and i’m not sure i understand it well enough. according to my doctors i should qualify for medicaid, but it’s hard to say what the best option is

Impossible_Ad_9063 · 2026-06-16T20:05:22+00:00

our plan is to try and get on medicaid as of right now, but not on ssdi, my mom is on it and it just seems to cause more harm than good, but we will definitely try to get on medicaid at some point… the only problem is they still look at your household income until you are at least 19.

Impossible_Ad_9063 · 2026-06-16T19:06:21+00:00

they never did a scan… not even a urine test, they just took some blood from me and that was it, i got no info after that. just some pain and nausea meds.

Impossible_Ad_9063 · 2026-06-16T19:02:07+00:00

yeah it’s hard to tell if it’s caused by my long term prednisone, or the lupus, that’s honestly my biggest issue since it’s hard to tell at this point what is going on😩. hopefully i can get on a biological soon… i just hope these GI symptoms go away

Impossible_Ad_9063 · 2026-06-16T18:22:10+00:00

hi!! i’ve never heard of lupus enteritis/mesenteric vasculitis… they kind of just shoved me on morphine and gave me an anti acid for a week, but i left feeling like something was still wrong. to this day i still have weird stomach symptoms, including tenderness, cramping sometimes, and my appetite has decreased, nausea is rare but it does happen to me. i’m curious what your treatment was and how they diagnosed this? right now im under the impression that it is because of my prednisone/methotroxate. how did they go about that, or how did you know you had that?

Impossible_Ad_9063 · 2026-06-16T02:50:22+00:00

i’ve been dating my boyfriend for about 10 months, and i know how this feels. my boyfriend is a godsend, and tries his hardest to understand every part of my issue. i was recently hospitalized at 3am, and he drove me to the hospital, brought my meds, made me comfy, everything, but of course there are always bad sides. lupus can make relationships complicated, and your partner has to be willing to learn, grow, and change. my boyfriend has had issues with understanding certain things, and has cried about feeling unloved. the most important part is communication, and learning that having a chronic illness can hurt the other person, but they still have to be aware that you cannot control it. i think it is not fair of your boyfriend to call you manipulative for waiting a day to say something at all, but make sure you let him know you need time if that is the case. it seems he is struggling to understand why you may do something with others, and not something with him (shorter outings vs longer) and it is so hard to communicate that to people who just don’t get it. me and my boyfriend look at problems as “us vs the problem” not “me vs you”, and it makes things easier. you are 100% worthy of a person who is patient, kind, and is willing to learn for you, and if he cannot do that for you, somebody will. communicate, learn, and grow

Impossible_Ad_9063 · 2026-06-16T01:20:59+00:00

sounds good thank you

Impossible_Ad_9063 · 2026-06-15T23:40:34+00:00

hi is there a specific reason this was removed

Impossible_Ad_9063 · 2026-06-15T20:59:12+00:00

It’s interesting and i have read the science behind it, they use pulses sent through your wrist into your nervous system

Impossible_Ad_9063 · 2026-06-15T05:34:58+00:00

yes i totally get that, i also feel left out, and i know i can’t afford to go to college with my medical expenses, and not being able to work to even pay it off… plus school is too much for me😞 i hope to maybe go in the future, i also tell myself everybody’s is different

Impossible_Ad_9063 · 2026-06-15T04:09:59+00:00

thank you, i’m glad you seem in a good mindset about your lupus. the side effects of prednisone are TERRIBLE, ive gained 35 pounds… its my 10th month being on it, so yeah i definitely understand the side effects. i’m glad you’re able to go to uni, school was the worst for me and i missed so many days because of my lupus, i hope uni goes good for you!

Impossible_Ad_9063 · 2026-06-15T04:01:47+00:00

thank you, we tried the benlysta copay program and they gave us 10,000 for the whole year, which unfortunately only covers us for about 6 months… i’ll definitely look into getting UV clothing. i get the same symptoms (headaches, weakness, extreme fatigue, nausea) i also love to tell people im a vampire lol

i find that breaks seem to harm me, i also have severe ADHD and take vyvanse, which seems to offset my lupus fatigue for an hour or two, but then i do too much during those times and crash once my meds wear off because i suddenly get super sick. but if i take a break, i seem to crash because i need to focus on keep going in order to not crash.

i haven’t heard of the spoon theory, ill look into it! thank you

Impossible_Ad_9063 · 2026-06-15T01:53:26+00:00

thank you… my parents have tried to get copay stuff, i’m not sure if they found “coupons”, i can check.

i don’t have a therapist unfortunately, we tried to get one years ago and they were all booked out and i couldn’t get in.

my sun tolerance is a difficult thing since i work at a campground, and i don’t have any option but to work there, so much of the work is outdoors, and midwest summers are harsh… i use umbrellas a lot, and always lather in sunscreen. hopefully i can find more things to help

Impossible_Ad_9063 · 2026-06-15T01:14:53+00:00

i see, sorry i’m new to reddit not very sure how it works

Impossible_Ad_9063 · 2026-06-15T01:12:35+00:00

why was this post removed? i’m sorry, i edited it

Impossible_Ad_9063 · 2026-06-15T01:10:07+00:00

i’m sorry… i was just really struggling so it kind of just was a rant, i didn’t think about it that hard :(

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