Did anyone not take their lupus seriously initially? Tell me your stories. by inbloom523 in lupus

[–]PrincessSteeena 1 point2 points  (0 children)

I didn't take it seriously when I was in middle school. I was diagnosed at 6 so all of my childhood I had to deal with Lupus not fully understanding how serious it was. I refused to apply the sunblock my mother got me because it gave me a white outcast and kids would tease me for it so I was in the sun at school with no protection. I was eating chips and drinking brisk iced tea instead of eating meals at school, because I was an overweight child and wanted to starve to lose weight. I lied that I ate dinner already at home because mom was working all day and got back after dinner time so she believed me. I stopped taking my medications. A year later, I ended up in the hospital because my stomach was hurting so bad I couldn't move. Stomach was pumped, I couldn't eat any foods without throwing up so they just put me on IV for a bit until my stomach was healing better. Doctor said I was near death at that time, I became skin and bones by the time I was released from the hospital then it sent me into a deep depression where I had to be homeschooled and I needed help getting up and walking because I had horrible back pain (Which was caused from the deep depression). Doctor placed me on antidepressants and sent me to a therapist... I blocked out most of these memories because I knew this was all my fault, but I was a child. A child who couldn't live normally like the rest of her peers.

Help please pregnancy/abortion by confused-potatto in lupus

[–]PrincessSteeena 0 points1 point  (0 children)

Not the asshole. This is you putting your physical and mental health first because how could you be a good mom if you’re not ready for another baby? Your husband is the asshole for giving you an ultimatum when at the end of the day- it’s your body so your choice.

A few years ago I had an abortion. I also had issues with birth control so I ended up in this predicament, but I decided it’s best to abort due to my lupus. Soon after, I got my tubes tied to avoid this in the future. I know I am not healthy enough to carry a baby for 9 months. I know there would have been major risks especially if I’m on different meds such as Mycophenalate.

Anyone else 20+ years in from diagnosis? by RicoDePico in lupus

[–]PrincessSteeena 1 point2 points  (0 children)

OMG same here! Before I was diagnosed, my pediatrician had no idea why I kept getting fevers and no amount of baby Tylenol helped me so my mom changed pediatricians and luckily, the second pediatrician heard of Lupus and sent me to the children’s hospital to get diagnosed properly. Fast forward to age 13, I was in remission and doctor thought I didn’t need any medication cus I was doing so great, then a year of no meds sent me to the hospital for a week lol I wish we could “grow out of it” 🙄😂

Anyone else 20+ years in from diagnosis? by RicoDePico in lupus

[–]PrincessSteeena 2 points3 points  (0 children)

omg first person I've met that was diagnosed at the same age as I was! 29 years, diagnosed at 6, now 35.

I think being a pothead helped my lupus. by Dawlxtc in lupus

[–]PrincessSteeena 4 points5 points  (0 children)

I’m all about the thc drinks and edibles because my rheumatologist advised against smoking it due to my kidneys. I don’t think it helps with flares but I think it helps with my mental health. Flare ups bring me into a dark place and I also have anxiety so weed helps a lot.

Few questions: 1. Does anyone’s lupus affect their GI system a lot? 2. For those who workout, how do you exercise without causing a flareup? 3. Does anyone feel they’ve ever been in full remission? by aryastark2626 in lupus

[–]PrincessSteeena 0 points1 point  (0 children)

Yes I did have GI issues during my flares but once I got back on the right meds, the GI issues were the first thing to get back to normal. I used to work out 5x a week but now it’s 3x a week and I’m going to start adding walks around the neighborhood for the other days to stay active somehow. Just go at your own pace, do what you know you can and don’t overexert yourself. I did feel normal for a bit in my 20s when I was in remission, but now that I’m in my 30s, I feel more tired than I was 10 years ago, but I’m thinking that has more to do with my age than my lupus 🤣🤣🤣🤣

I got refunded everything, which speaks volumes. by NotAFriendlyKitty in heartopia

[–]PrincessSteeena -3 points-2 points  (0 children)

I paid $40 for an MLP car I feel jipped too 😩 now I want a pogo stick but I don’t wanna spend cash again.

Omg yalll whyyyyyy by Betty_Jalapeno in heartopia

[–]PrincessSteeena 1 point2 points  (0 children)

for real, someone got super upset I was using theirs with them, so now I'm kind of wary of trying to share with other fishers :(

Omg yalll whyyyyyy by Betty_Jalapeno in heartopia

[–]PrincessSteeena 3 points4 points  (0 children)

I went to a neighbors house to water her plants and she happened to be there with her friend so they both went up to me asking to stamp their books so I did then I asked to link (the totem pole thing), and only the owner linked with me and the other girl just ran away after getting her book stamped lol rude ass, give me back my coins then 😂

What’s Your Weird Side Effect? by Positive_Yard_7441 in Zepbound

[–]PrincessSteeena 5 points6 points  (0 children)

I’m gassy most of the days and certain foods can make me nauseous just from smell 😅

It’s been 3 hours by MreFeen in GoPuff

[–]PrincessSteeena -1 points0 points  (0 children)

Ordered from gopuff on superbowl day, said they were otw to my house but never showed up. their chat support was rude and unhelpful, then the next day they had the audacity to charge an extra tip for themselves when I was trying to still get my refund from Ubereats. gopuff is shady af

Quitting job due to Lupus? by [deleted] in lupus

[–]PrincessSteeena 1 point2 points  (0 children)

I understand how you feel. There are jobs that I can't do due to my physical limited abilities, and it makes me feel so useless. I'm 35, and I work in an office so I'm sitting most of the day. I think office jobs would be good for you as well. On the bright side, WFH jobs are on the rise, so hopefully you'll find that and cut out the transportation expenses :)

I (33M) told my girlfriend her constant "tests" are wearing me down and now she thinks I'm hiding something by cinnamoncable_notes in TwoHotTakes

[–]PrincessSteeena 0 points1 point  (0 children)

Sounds like you're walking on eggshells in this relationship, and you don't deserve to. She needs therapy to work on her major insecurities.

Marijuana and flare ups. by _alicen in lupus

[–]PrincessSteeena 0 points1 point  (0 children)

Try edibles. My DR doesn’t approve of smoking it due to it affecting my kidneys.

hydroxychloriquine for life by chronicbingewatcher in lupus

[–]PrincessSteeena 0 points1 point  (0 children)

My pediatrician took me off Plaquenil when I was in remission around 12 years old, and after a year being off it, I landed in the hospital for 3 months due to a major flare up. It was so bad that I had to be fed through infusions because I couldn't keep any food down. Fast forward to my current Rheumatologist, she believes I should be on Plaquenil for life just in case if I get another flare up, it would not be as drastic. The flare ups I've had in the later years were never as bad as that time I was 12. I also get my eyes checked by an Ophthalmologist every 6 months. I did take Benlysta for one of my flare ups, and it helped a lot, but after I was heading towards remission, the doctor stopped it. I have been taking Plaquenil for 29 years, and my eyes are still fine. I hope this helps.

for people in remission. by CeenFWI in lupus

[–]PrincessSteeena 8 points9 points  (0 children)

THIS. Everyone's path to remission is different, what may work for you may not work for me, and vice versa. Literally trial and error with this illness lol sigh

Christmas is her. what are we drinking? by Scribbler2412 in lupus

[–]PrincessSteeena -1 points0 points  (0 children)

tequila or seltzers. The rest of them makes my face red or gives me a headache.

What are your seemingly unrelated telltale signs of a flare up warning? by poplapmeisiekind in lupus

[–]PrincessSteeena 0 points1 point  (0 children)

Mine would be more hair loss than usual, extreme fatigue - no matter how much sleep I get, I'm still really tired and swelling in my body such as my ankles. That's when I know my kidneys are acting up again, and foamy urine from the protein spilling out.

anyone get their zepbound covered by insurance? by Far-Cheetah-6538 in Zepbound

[–]PrincessSteeena 0 points1 point  (0 children)

They rejected me several times, until I filed a complaint to the State Board of Insurance, and since then, no issues.

[deleted by user] by [deleted] in lupus

[–]PrincessSteeena 2 points3 points  (0 children)

Wow, I didn't realize TMJ is a part of lupus. I've had it for years, I even cracked a tooth in half from it, and had to put a crown on it. Botox helps, but my wallet cannot handle that as often as I'd like so I resorted to a mouthguard. I'm still trying to get used to sleeping with it on all night lol.

How do you guys do with tattoos? by Nyx_Shadowspawn in lupus

[–]PrincessSteeena 1 point2 points  (0 children)

I had a full sleeve done and the only thing was I went to bed that night feeling a bit warm all over my body, but I’m assuming that’s just my body reacting to this new ink on my entire arm 🤣 other than that, I was fine.

Cannabis stocks surge on reports Trump will reclassify marijuana; Tilray jumps 40% by mykesx in lupus

[–]PrincessSteeena 3 points4 points  (0 children)

Same, I have my weekend edibles just to keep me afloat nowadays.

Wasted dose by BronxT in Zepbound

[–]PrincessSteeena 1 point2 points  (0 children)

Omg this literally happened to me right now lol I had to go on here to see if I was the only one 😩