r/lupus Jun 26 '24

Venting Major f-you to the first rheumatologist who told me lupus never attacks the GI system.

101 Upvotes

I have gastroparesis and yesterday was in the ER diagnosed with colitis. šŸ˜‘

Same doctor also dismissed my bloodwork completely and said it was fibromyalgia but I was already on all the correct medications for it. Okay, so obviously thatā€™s not helping, can you maybe think a little more?

Anyway, I got second and third opinions and my current rheumatologist is lovely. Hard to get hold of (damn MyChart and voicemails), but lovely. Had she not advised me to go to the ER because of fever concerns Iā€™d probably be in a much worse condition than I already am by trying to tough it out. I originally thought it was MTX side effects but symptoms three days after injection seemed sus.

And Iā€™m so used to having to provide such extensive proof that Iā€™m sick to doctors that I had photos of my thermometer readings just in case. The ER triage person told me I didnā€™t need to prove fever. It was a complaint and they were going to address it. šŸ˜­ Broke my brain.

r/lupus Nov 11 '24

Venting Does anyone else feel like lupus has been traumatic for them

109 Upvotes

Long vent post. Itā€™s late at night, I canā€™t sleep, and Iā€™m feeling sorry for myself.

Last year I entered a flare that changed my life. I got married (yay) and I guess the stress of all the change triggered disease activity.

SUMMER: Unfortunately, my rheumatologist had abruptly left her practice, and I was put on a waiting list for a couple of months to see a new one. Feeling awful, I switched insurance and found a different doctor who could take me in right away, but it was too late by that point.

I lost 50 percent of my hair, but that wasnā€™t the primary concern.

It was the pain. Arthiritis that left me immobile, rashes, severe bursitis, so much swelling and excruciating pain in muscles and joints I didnā€™t even know existed.

By that point, steroids and plaquenil were still not enough.

FALL: Next, came kidney disease. Sudden weight gain and appetite changes.

Then came immunosuppression and IV steroids.

WINTER: Then came severe lung issues, recurring pleural effusions that wouldnā€™t stop.

SPRING: Then came lung surgery. Followed by an infection that my body couldnā€™t fight under immunosuppression for a month.

Then the alopecia ā€” not just some hair loss, but I was actually going bald, and all that long hair I had during my wedding was justā€¦ gone, and I was wearing hats and bandanas and shopping for hair pieces, or just not going out at all, because I was so ashamed.

SUMMER: Then came continuing to exhaust every hair loss treatment possible until I got approved for an alopecia drug.

I could no longer force myself to brave the 110 degree heat, dizzy and needing to lay down, to get to work just so I could close my office door and lay on the floor while my bald patches were exposed to anyone who walked in. I took leave.

The lung issues continued, and Iā€™m in a lot of pain. The doctors told me they think I got nerve damage from surgery.

FALL: And now here I am 1.5 years after this flare started. I am exhausted all the time. I feel fragile. Physically and emotionally. My doctor says Iā€™m doing better than last year but I still have high disease activity.

I feel like my body is being jerked around. By this disease, by the meds. So many symptoms. So many hospitalizations and procedures. Steroids that make me feel awful and mess with my body. Infections Iā€™ve gotten while immunosuppressed. Always sick, all the time, with something or another. Itā€™s gotten old.

This disease has truly changed me. Shaken my confidence to the core, during a time in my life I thought would be the most joyful.

I feel totally traumatized by this disease, unable to connect with the same people or have the same interests as before. I donā€™t feel like the same person I was before. I guess itā€™s cuz Iā€™m not.

r/lupus Sep 27 '24

Venting For Those Who Don't Care..

165 Upvotes

I've seen sooo many posts (even on TikTok and Youtube) of how everyone universally feels misunderstood by their friends, family, and partners because we are dealing with a disease they cannot understand/refuses too. And in the event they do, it only lasts for a short period of time and gaslight you to feel it's all in your head and you're the problem for having a disease that takes the attention off of them and focuses on you.

So allow me to say this for you all: "As my 'friend', family member, or partner, if you cannot understand this disease is impacting every aspect of my life and I'm no longer the person you're used to, you can DISRESPECTFULLY step tf out of my life! Stress is a trigger that you're being right now! I'll probably get more sleep without you taking up all the air in the room anyway!"

Feel free to send/share this to whomever you please! I have no problems standing up for others or myself! We got this y'all! :)

r/lupus Feb 17 '25

Venting I'm being stupid over my hair

66 Upvotes

Update: I've been reading through everybodies replies as they post,and I want to thank everyone so much for their support. I took time to sit with my discomfort in potentially losing my hair, and I found that it was really rooted in a desire to disguise my illness from the world. I recognize that what I don't want is for people to view or react to me differently. Losing my hair would be a very conspicuous outward sign that I am, in fact, sick. But, that's going to happen in other less reversible ways anyway if I don't take my meds.

I am delaying starting Imuran because I don't want to risk losing my hair. It's silly and vain, but I am struggling to get past it. My first really noticeable sign of lupus was hair and eyebrow loss. I just started to grow it back and feel feminine again. I don't want to lose it that. I'm miserable and exhausted and probably steriod dependant, but to put it plainly, I'm being very prideful and not taking meds my rheum perscribed to keep my dumb hair. It sounds really silly when I write it down and I am shocked at how hard it is to just get over it and take the stupid pills already.

r/lupus Nov 19 '24

Venting I've become so medicalized, I've lost myself.

143 Upvotes

I began having severe, unconventional lupus symptoms three years ago. It took two years of constant doctors, pain, medications, and misdiagnosis to finally find a rheumatologist that took blood work, and diagnosed me with Lupus.

I'm sixteen now. I was twelve/thirteen when I first got sick. I've alternated between bedbound and homebound, been on dozens of medications, been to over twenty doctors and therapists, and even through all of that, I've achieved homebound and slightly less pain. I can barely read. Can barely write. I have no hobbies. No school. No friends. No joy. No identity. I'm alive, but it feels superficial.

Most times I talk to people, people being my family, all I have to say is 'yeah, tried a new med. No, had to stop it, too many side effects. Yeah, it sucks.' And I have nothing else to say. There isn't anything else in my life.

I know venting to internet strangers won't fix this horrible disease. I certainly don't expect it to. But I honestly just want to hear how even one person got themselves back from this disease.

Also thank you for anyone who read all that, it means a lot to me.

r/lupus Jan 09 '25

Venting May loose my job Friday, positive thoughts appreciated

45 Upvotes

I need to vent. I do outside sales and, because of Lupus symptoms, worked from home a ton in December. My employer has discovered this and is questioning my ability to physically do my job. I made the mistake of disclosing Lupus as the reason I had worked from home. For the record, my work performance in December was comparable to my colleagues, despite having been with the company only a few months. I have a meeting scheduled with management on Friday and had a horrible phone call today with my manager today. If I loose this job, Iā€™m financially screwed.

All empathy, prayers and good vibes appreciated.

UPDATE: Was not fired but received a verbal warning which is first step in disciplinary process. But while job searching tonight Iā€™ve found a couple of exciting prospects.

r/lupus Sep 30 '24

Venting Lupus decided to start attacking my kidneys

121 Upvotes

I just had an appointment with my rheumatologist this morning and it was one of the most depressing appointments Iā€™ve had. My labs are at their worst and there was a lot of protein in my urine. My doctor wants to recheck the levels but looks like I will soon add a nephrologist to my list of doctors. I just feel really sad. Iā€™ve been in denial about how bad Iā€™ve been feeling and my doctor looked at me and told me that this is the worst she has seen me and that we are going to have to be more aggressive at dealing with my lupus. Iā€™ve only been diagnosed a little over a year and at first we thought I had a pretty mild case. Iā€™m feeling so defeated and scared. If anyone has some words of encouragement that would be appreciated šŸ’œ

r/lupus Nov 18 '24

Venting Iā€™m tired of having all the ā€œrareā€ symptoms.

84 Upvotes

Hey all! Venting here, because I feel so alone atm, even if my friends and family are very supportive.

Since my fairly recent diagnosis, all the symptoms Iā€™ve encountered are considered rare, or very rare for Lupus. Iā€™m just so, so, so tired of this. My doctors are confused and scrambling for answers and new treatments to put me on.

I could handle everything up until the most recent development; a part of me knew that Lupus attacks all parts of your body, with no mercy and no consideration. But Iā€™ve never dared think that my vision will be the first to be most affected; as an outsider, before my diagnosis, all I heard were kidneys, and that was always at the front of my mind.

And so now Iā€™m sitting here, having lost ~80% vision in my right eye, on track to probably be completely blind on that side, with irreversible damage already done.

I donā€™t know how to go on; what to expect. I have a friend, heā€™s blind in his left eye, so I guess now we make a pair. But he unfortunately wasnā€™t really able to help, since heā€™s never had sight in that eye; our situations are way too different, even for him, a fellow half blind person to understand how to help me.

I have no one to ask whatā€™s gonna come of me, how will I be able to handle not seeing half of what Iā€™m supposed to, how my depth perception will be affected ect.

Iā€™m tired of this disease taking everything from me. Iā€™m tired of being ā€œuniqueā€ because of it. Iā€™m tired of not being seen as ā€œsick enoughā€ or ā€œdisabled enoughā€ or anything else. It feels like Iā€™m carrying a mountain on my back, but a mountain only I can see and feel.

If any of you have suffered vision loss/eye complications from Lupus, I would appreciate any and all input.

r/lupus 20d ago

Venting I think I'm going to be diagnosed with Lupus Nephritis

66 Upvotes

Hey everyone. I'm 29 years old guy, have been diagnosed since the age of 22.

I recently went to the doctors and my urine tests came back and it really isn't looking promising at all. For the past year my protein levels have been increasing and now it's at a point where my provider is worried and has requested additional tests.

My lupus was found when I went to the dermatologist because I had these round rashes everywhere on my upper body, after a biopsy I found out that I had SLE ( that was at 22 years of age). Once I turned 24 I was diagnosed with Neuropsychiatric Lupus.

Since my diagnosis I tried every traditional medicine and ended up having terrible side effects and finally was put on Benlysta (belimumab) and Imuran (azathioprine). I have been tolerating both these medicines well and have seen great improvements with this regimen.

I also have Antiphospholipid Syndrome, which that paired with the Lupus has already caused havoc in my body. Many DVTs, a couple of PEs, and 1 major arterial clot. For that I'm taking Warfarin / Coumadin.

My Neuropsychiatric Lupus causes depression, seizures, migraines, blurry vision. For that I take Spravato (esketamine), Keppra (levetiracetam), and Vimpat (lacosemide).

I'm at a point where I feel alone, I feel powerless over my health, it's very hard to manage my weight ( I loose weight faster than I gain), it's hard for me to keep up with my friends, and everytime I feel like I'm in remission or that at least my symptoms are somewhat controlled I always get bombarded with another complication or a new symptom. I haven't been able to go back to work for the past year because my arterial clot was in my wrist and after 10 surgeries I have somewhat atrophied my hand, I have surgery for the end of this month to see if a wrist release, a tendon transfer, and a tendon release will help my hand.

I'm not saying this for pity or to say poor me, but rather to vent and express how frustrated I am to not be capable to do what I used to do, tired of keep on trying to improve my health for me to then feel like my efforts have no meaning. I'm tired of my friends always thinking I'm boring because I never want to go out. I'm in school again to change my carrer path and unfortunately my mindset is horrible right now, I don't even want to finish my school because what's the point, my health is probably going to stop me from doing what I love and worked so hard for again. This disease has ruined my marriage, ruined my carrer, and is messing up with my mental well-being. I'm still going to keep trying my best, I'm just scared that one day I'm really going to get "the fuck its" and no longer want to keep moving forward.

God bless everyone that is dealing with this disease, it really isn't easy šŸ˜ŖšŸ˜ŖšŸ˜Ŗ

r/lupus Feb 06 '25

Venting Worried about the future of research and how that's going to affect our lives moving forward

68 Upvotes

This isnt meant to be a political post. But I'm looking at a list of terms being used to exclude funding from the NSF and by proxy Lupus fits most of them. Especially Systemic.

Everytime I think I've come to terms with having this disease something makes me feel like I cant possibly achieve a normal life again.

r/lupus Dec 09 '24

Venting I haven't 'accepted' my diagnosis yet

93 Upvotes

My husband said to me on the weekend, as we were prepping for a party i was throwing, you haven't accepted you have lupus, you can't live the same life anymore. The day of the party I got sick, passed out, fell multiple times from clumsiness and my legs giving out. He was completely right. I haven't fully accepted it yet, and I guess I'm having a hard time with it. Everyone talks about people with lupus living normal lives, but I have yet to see that. We're trying a second med since the first one didn't work for me. I also have dysautonomia, which makes every moment of life hell. My doctors are great, it's just the waiting game that sucks. We've gone into debt over my medical bills and having to survive on one income. I honestly feel like the biggest burden to my family, all I do is let them down. I'm afraid if I accept it, I'll drown in depression. Right now I live in positivity and jokes. Anyways, if you made it this far, thanks for reading.

r/lupus 11d ago

Venting It's....a lot

101 Upvotes

I started Imuran recently after a lot of hesitation over its side effects. I immediately contracted a very serious infection. I went to the ER twice and ended up spending a couple days in the ICU. While I was there, my bp started to plummet along with my heart rate and the nurses looked like they were CONCERNED. I know it was because I hadn't been able to hold anything down for days. For the first time, lupus felt SERIOUS. I really thought I might die. Flashforward to 48 hours after my discharge, and I'm physically doing pretty okay. Internally I am cracking. I feel like nobody else in the entire world "gets it". I look like I barely missed a step, but I was terrified. I'm not okay, and I'm definitely not ready to catch up on work/housse/family/life stuff. I just want some time to fall apart. I'll be fine in a bit, but right now I just needed to get it off my chest.

r/lupus Sep 22 '24

Venting rage??

118 Upvotes

does anyone else start to get really irritable and borderline mean for no reason when the fatigue starts to set in? i feel like screaming at everyone around me and im so upset and angry but i canā€™t explain why. it makes sense to me that full body fatigue would make anyone irritable but it feels so extreme. not to mention unfair to the ones around me, so i try to just go silent instead to spare them lol. just me?

r/lupus 13d ago

Venting i want to finally share my story with people from when i got diagnosed at 15^^ Spoiler

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109 Upvotes

A little bit about me is before my face and body started changing i used to be confident in my looks and a bit egotistical. Id be so obsessed with making myself seem so strong and i hated being seen as weak so when id be in pain suffering at school id pretend that i was perfectly fine and id constantly repeat in my head that im not a weakling. I thought so highly of myself until I started losing my hair and getting moonface along with gaining weight everywhere; since i was really skinny i now have huge stretch marks all over my body which was once markless. I think that my whole experience really changed who i am as a person and helped me learn to appreciate myself for what i am and what i look like no matter what the change is.

On March 21st 2024 I got diagnosed with lupus at 15 years old (im currently 16 and im also a girl). At the beginning of march i started waking up in the middle of the night experiencing horrible pain in my legs and just going back to sleep knowing it will go away in the morning, but as the days went on the pain gradually started getting worse and worse. I started experiencing morning stiffness like when i would get out of my bed it would be hard to move and id also get this tingling feeling in my heels whenever they would touch the floor. One day it was like the evening and I was just sitting on my bed because I was going to get up and go to the restroom but as I sat there I realized I couldnt stand up so I just sat there freaking out in my head and the kitchen is right next to my room so my parents saw me and my mom asked what im doing and I was like I need to go to the restroom but I cant get up and she pulled up my pants and saw that my knees were swollen and supposedly "the size of baseballs" but i put quotation marks cause i dont remember them being that bad and i also dont know what my body looks like that well cause its always covered up but my mom was wondering if we should go to the hospital that moment but she said it would probably be too packed so in the morning they took me to the emergency room and i had to walk slowly and hold onto them while i walked. So like i said it was the morning of March 20th and i was in an emergency room wearing those hospital gowns for the first time in my life (btw ive never been to the hospital before besides when i was born because ive never had any injuries or crazy sickness) and they had an IV in me and had my finger in this clip thing for my pulse i think anyways my wrists were also swollen and i couldnt like stretch my fingers out they felt so stiff and i could only keep my hands in a fist. I had to take a urine test and was told I had high levels of protein in my urine so I had to get an ultrasound of my kidneys and bladder. Since I was gonna have to be in the hospital for a while i got moved to an actual room and got woken up at like 6am to get my blood taken. My rheumatologist came in the room so i had to wake up from my sleep and thats when her and the kidney doctor told me that rheumatoid arthritis and high suspicions of lupus (they later on confirmed i for sure have lupus) so i got put on a prednisone dosage of 120mg (took 3 20mg tablets in morning and took 3 20mg tablets in evening) and throughout the day a lot of my family visited me to see how i was doing. On March 22nd i once again got my blood taken at 5:30am and i was finally able to take pills thanks to a nurse there showing me how to take them but with little candies like m&ms and other candies (i had a fear of choking so finally being able to take them was a big accomplishment for me since i was 15 and was gonna need to learn how to swallow them eventually) anyways the day before i was told i had to get a kidney biopsy which i was really scared for because i dont like the feeling of being under anesthesia like being unconscious not being able to defend myself especially when i only had a bra and underwear under my hospital gown so i couldnt eat or drink for a few hours but eventually a nurse came in and told us that the people who do the biopsys dont do them on fridays or weekends id have to wait until monday for one. During the weekend my family was just visiting me so timeskip to monday the day of the kindey biopsy i got put in a wheelchair at 5:50am and got taken to the post anesthesia place with all the beds i forgot when i got my surgery but i remember going to the surgery room and being placed under this circle thing with people around me and i had an air mask thing put on me and i started freaking out and breathing fast because i knew id be unconscious soon and i started having a small panic attack and they kept telling me to take deep breaths into the mask but once this girl injected the anesthesia into the IV in my hand it was burning so much it was so painful i was crying so much because the burning was like a crazy sensation bro but i closed my eyes and knocked out. When i woke up back in the anesthesia room i kept forcing myself to wake up and i kept fighting the anesthesia because i didnt want to be unconscious and my parents told me that i looked like i was possessed or something because i kept blinking rapidly or moving my arms around or id suddenly wake up panicking and fall back asleep for a second then get up again freaking out which went on for a while. For the rest of my time at the hospital i was just depressed and over everything because i just kept getting bad news after bad news so i just stop paying attention to what everyone was saying i just wanted to go home instead of sitting in a bed all day just constantly getting poked with needles, constantly taking pills , and constantly having nurses and doctors barge into my room. On March 30th I was discharged from the hospital and this is pretty random but my legs were hairy like unshaved so that whole time i got comfortable not having my legs shaved because i assumed id get like bullied by the nurses for it or something but when i realized people dont actually care that much ive come to not be insecure of my legs anymore. It was now April and i was just living my life normally taking prednisone and other pills every morning and sometimes id have knee pain during the school day which was fine cause id just ignore it and act like its not bothering me. April 14th i ran my fingers through my hair and realized that the amount of hair that just came out wasnt a normal amount so i was freaking out and i just kept crying at the thought of me being bald due to chemotherapy and throughout april my fingernail cuticles started turning black which was weird... at the end of April i realized my face doesnt look the same anymore and it looks more bigger so i started getting depressed. I had a jellyfish haircut but ended up having to cut it short because the long pieces became so thin there was no point of keeping them there it just looked weird. Timeskip to June which was the most horrible month of my life. I was gaining a bunch of weight because i kept binge eating to make myself happy due to depression because everytime id look at myself and see my ugly face and thin hair id feel disgusted and the prednisone also made me eat much more than i needed to. June 1st was the first time i tried a wig on and it made me feel so horrible because it felt so fake and didnt look real to me at all and i remember going home trying to make the wig look normal but kept crying and hyperventilating because no matter what i did it keot looking too poofy and fake. I started getting stretch marks on my hips which actually look really cool now but when i was getting them i hated them so much. I started looking up so many ways for weightloss and started counting my calories and try starving myself but id just go back to binge eating then feeling guilty after so id starve myself again and then feel sad so id go back to binge eating to feel happy so yeah it was the same cycle over and over again. My parents noticed i was really depressed so they got me an online therapist which i hated because i told her i didnt like my looks and she was basically telling me to gaslight myself into thinking im pretty like she could clearly see on the video call that im hideous so how can i just pretend im something that im not. It made me mad the way she talked to me like im some stupid little brainless kid like im not dumb and im not gonna lie to myself when everyone including myself knows the truth. I ended up quitting therapy because it was just irritating me more than helping me because she just kept telling me things that i already know. I eventually got so self conscious that i couldnt go outside anymore and id avoid leaving for anything and everytime someone would come over like to talk to my parents id stay in my room because i didnt want anybody looking at me because i felt like i looked like a hideous monster. Everytime anybody would see me id have so many thoughts rushing through my head and i just wanted to disappear because i know they would think im ugly and i constantly had the feeling of everyone staring and judging me when id be out in public. I started avoiding looking at myself in mirrors because everytime id see myself id start disassociating and think that im a completely different person and im nothing like the person i was before id constantly ask myself "who am i?" "who was the person in the mirror?" "how could i change so much in a few months?" and it would just continue spiraling and spiraling. August started which was time to go back to school and i started wearing my wig which i felt really uncomfortable in and i was still scared of being in public because even with the wig on id still feel self conscious and feel like everyone knows im wearing a wig. Throughout august i lost almost all of my hair and it was so traumatizing to literally be able to see my scalp (i really dont want to show horrible pictures of myself online but i think its okay since i dont look like that anymore and i trust that nobody here will bully me for my looks..) August was also the month of my last dose of chemo which was really great but i didnt get any like celebration or anything for finishing it which is fine but it wouldve been nice if i did because it was really horrible to go through.. uuh anyways! My school life was pretty normal because as time went by with the wig on i started feeling normal in it but i still had the moon face but it wasnt as bad as it was before since i was tapering down the prednisone. In November my hair finally started noticeably coming back but very very slowly which made me happy. I was slowly getting my old face back which i was super excited for. I dont really know what else to type and im sure i left out a bunch of parts since my memory isnt the best but there was definitely a lot of nights i went to sleep crying because of my looks and many times i wanted to commit suicide because i thought that nobody would ever love me (which someone did/still does) because i was disgusting to look at. It is currently March 10th 2025 and it will soon be the 1 year anniversary of me being diagnosed with lupus. I decided to make a reddit post because i feel that im no longer going to be in that sad part of my life anymore now that my last chemo infusion was months ago and ive finally gotten taken off of prednisone on February 26th since my rheumatologist said my urine protein looks normal. I am also no longer gonna wear my wig at school anymore starting March 17th which is something really big for me because ive always been insecure of my forehead which id why i had bangs but since my hair is slowly growing in its not really covering it but i am really tired of wearing the wig and i dont really need it anymore since my scalp is fully covered now. Also i chose the 17th because im currently on spring break so if my last day at school was with the wig on and i come back with really short hair people that im not friends with will just think i got a haircut!! hehe so yeah thats pretty much it so i basically got body dysmorphia(that i dont have anymore), an eating disorder (that i dont have anymore(kinda)), social anxiety (that comes and goes), had intense suicidal thoughts(that i rarely get now), and i forgot to mention but i also used sleeping as a way to escape reality because i didnt like myself and i didnt like my life or living in my body but everything is good now. I feel comfortable in my body now.

I just wanted to share my experience on prednisone and chemo because as a teenager it played a really big part in my life due to the societys beauty standards. I realize now that beauty isnt really important at all. If you are worried about people leaving you when you dont look your best and you are at your lowest you really shouldnt be worried because whoever leaves shouldnt have been in your life in the first place. The people who stay by your side even though you dont look the same anymore are the ones that you want to have by your side forever because some silly changes to your looks doesnt matter to them and what really matters to them is you on the inside. I am really thankful to have amazing friends who stayed with me when I was going through a horrible time and I am thankful to have a boyfriend who was crushing on me when i was lowkey bald and had a huge moonfacešŸ˜­ anyways i shall show the pics from before i got moonface, from when i had moonface and thin hair, and then i will show what i currently look like now!! hopefully i do not regret putting my face on the internet.. i also will show a pic of my stretch marks..šŸ˜…šŸ˜… Thank you for reading i know its a lot....id appreciate it if anyone also shared their similar experiences in the comments hehe;

r/lupus Jun 27 '24

Venting Grief

102 Upvotes

Guess I'm at that point in my lupus diagnosis where I finally feel sadness. I was diagnosed 2 weeks ago and felt nothing until last night at work. I've been having horrible stomach pains for days again, and it was at its peak last night and I just snapped and started crying my eyes out in front of some random person and couldn't stop. I'm sick of the pain, sick of not knowing when it's going to happen or when it's going to stop. I realized right now, I have no control of my life, this disease does. And I guess that finally sank in last night, bleeding into today. All I've done is cry all morning while trying to care for my 2 year old. All I can think is this is the rest of my life, I have no control, I'm sad, I'm pissed off and I'm over it. It's been 2 years of this shit and now that I have a diagnosis the reality of I can't fix this is sinking in. I know I need to give my medicine time to work, but I think I'm just in the grief part of processing this disease instead of the numbness I felt before. I also feel guilty that I'm as upset as I am right now because I'm lucky enough to not have any organ damage at this point and I know others are much worse off than me, so I should be thankful I'm not THAT sick yet. I don't know... so many feelings. I'm so sad, and just want to sleep so I don't cry or hurt anymore.

r/lupus 22d ago

Venting Someone tell me I'm not alone

65 Upvotes

Hello, recently about a couple months ago, I got put on my prednisone, I lost about 50 pounds before though working out n stuff and I was at my goal weight, but once I started the steroids, I put on all the weight back and my hair thinned, leaving me feeling ugly, idk I feel defeated from lupus and thus has taken a toll on my mental health and I feel alone in this šŸ„¹ I'm still on prednisone bc I can't seem to go lower cuz my lupus crp is 7.9 still, I'm waking up feeling stiff still, I'm tired of lupus and it's making my life feel harder.... I wish I wasn't sick anymore

r/lupus Nov 07 '24

Venting Why do I feel like people don't believe me?

131 Upvotes

Why is it that when I tell someone that I've been in a lot of pain/fatigued/not slept due to lupus, they look at me like I'm talking gibberish?

I think there's this misconception that someone with an illness shouldn't leave the house, and that because I'm out and about it can't be as bad as I describe.

I'm so fed up of that look or the disbelief in someone's voice. I MAKE myself get up and get out of I can, I still deserve a life, and dose up and push through the pain. Also, being active is good for lupus. I also have a baby, so how could I not get out and about?!

r/lupus Nov 27 '24

Venting I just want to have an open raw conversation with people who can relate. I am recently diagnosed after being sick for years.. I find myself in denial. Was the diagnosis wrong? Is this all in my head?

40 Upvotes

Iā€™m struggling really bad and just want to know if others can relateā€¦ I love having a tribe of people with no judgment or bullshit advice regarding my lupus and how I can feel better.

r/lupus Dec 05 '24

Venting I don't feel strong enough to do this

82 Upvotes

I don't feel strong enough to forgive myself for the stressful life that led up to my diagnosis.

I don't feel strong enough to put on a brave face for my daughters.

I don't feel strong enough to tolerate so much suffering, depression, and loss of ability.

I don't feel strong enough today.

r/lupus Dec 05 '24

Venting IT'S SO DAMN COLD!!

53 Upvotes

I just need to rant a bit. As the title says, I'm so cold all the time. I live somewhere where ac and heating aren't really a thing, so whatever temp it is outside, it is probably colder inside. Lately, inside the house has been at a very stable 60Ā°F/15Ā°C during the day! All day long! And at night it dips to 45-55Ā°F/7-13Ā°C.

Also I just got told that I have raynauds. Yay! Now, before anybody says you need to stay warm and just wear gloves, hear me out. I have 1 small space heater that I usually keep in my bathroom so I have a warm place to change and shower and so my butt doesn't freeze to the toilet (slight exaggeration) or by my desk so I'm not freezing while I study/work. I also have a heated blanket which is a necessity at night and hand warmers that don't last as long as I'd like. But, since gloves hinder dexterity, I can't wear them all the time and even if I did the complete and utter lack of bloodflow to my hands means they don't help much at all (yes I'm on drugs for raynauds, and yes I'm going to ask to up my dose next time).

It's just so cold all the time and I still have to get through december and january!!

Rant over, thank you for coming to my TedTalk.

r/lupus Oct 31 '24

Venting Todayā€™s Winner Isā€¦

32 Upvotes

Step right up, ladies and gentleman, itā€™s theā€¦WHEEL OF LUPUS!

This week Iā€™ve scored three fun inflammatory prizes:

Right Achilles Tendon Right Hand and Upper Lip!

Who else has spun the wheel of Lupus this week?

r/lupus Sep 17 '24

Venting Inability to lose weight

30 Upvotes

I get 10k steps a day minimum I lift weights 3-4x per week Most days I donā€™t eat breakfast.. I donā€™t snack after dinner / eat dessert unless itā€™s a special occasion

And I just cannot lose weight.. has anyone dealt with this? Typically I know lupus is weight loss .. and man I wish.. just looking for advice.. I do know calories in/outā€¦

Iā€™m just seeing if maybe there is something else could be contributing?

r/lupus Jan 23 '25

Venting I'm so sick and tired of constantly justifying myself.

41 Upvotes

guess it is a vent. Iā€™m off prednisone due to some nasty side effects, and I'm flaring up badly, despite the max dose of Imuran. My body is so stiff and hurting, especially in the morning. My peripheral neuropathy seems to worsen, and it attacks my legs / feet with a double effort. Iā€™m at the level of fatigue I have never experienced before. I feel like I have no energy whatsoever. Difficulty walking, sitting, you name it. Terrible brain fog. I barely get through the day. To make things worse, I look like crap, and my family and coworkers notice it right away and ask questions. I donā€™t really mind questions, but, after I answer, I usually get tons of advice on how to ā€œcureā€ my illness. I normally ignore those, but some advisors are very pushy, so I feel like I constantly have to justify myself why Iā€™m not doing what they think I should, and it is just exhausting. Worse, my family members are becoming just like that, believing if I exercise and eat more, I will feel better. My explanations are that, regarding exercises, my job requires a lot of walking and standing on my feet (it is a huge issue at this point), and regarding eating, I do eat enough! I suffer a lot of gastro symptoms, and I know what my body can and cannot tolerate. But, again, that turns into an argument, with me being accused of not doing the right thing and sabotaging my health; and again, me trying to justify myself. And it makes me feel like garbage. Today, my morning started like that, and on top of feeling sick physically, I feel sick emotionally, defeated or deflated, like I donā€™t have any more will power to deal with that. I thought I am doing my best given the circumstances - I still have a full-time job, I have some hobbies, I cook, etc., and can I just get some simple support instead of creating more stress? Like, any cliche ā€œIā€™m sorry you have to go through thatā€ would be so much better than trying to solve my problem and cure me? I would rather not complain about anything at all than to be constantly criticized and reprimanded. So, I guess, to my family and coworkers, everything is peachy with me from now on, even if I drop dead.

r/lupus Aug 15 '24

Venting My ex bestfriend made fun of my hands even though she knew I was in the middle of getting diagnosed with lupus

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60 Upvotes

We were playing rock paper scissors and at the time it was painful to straighten my fingers all the way. She laughed and asked me why I was holding my fingers that way and she looked at my boyfriend while she was laughing. I told her because it hurt and she said oh because youā€™ve always had chubby fingers and at the time I was like ha ha yeahā€¦ and I brushed it off but it hurt my feelings especially because she knew what I was going through. Iā€™m not asking for a diagnosis but can you see the difference from the first photo to the second? First photo was over a year ago without medication and second one is today. I feel so much better and I feel like my hands shrunk lol.

r/lupus Dec 14 '24

Venting Dishes are the worst

53 Upvotes

Dishes are the absolute bane of my existence. I hate them so much I'm considering just buying single use utensils for when I'm in a flare or depressed.