#lupussucks

[scottishmaidensworld]

Sometimes reading these is the only thing that gets me through a day. It’s okay, not to be okay.

[lupus-esque]

Hi warriors & hydroxychloroqueenz 💜

I figured that I would post about when I first got diagnosed w/ SLE.

I know I had symptoms way before being diagnosed, but it all made sense after the official diagnosis.

I was diagnosed with SLE in December of 2017; I was 18 years old. In my first semester of college all the way in FL when home was in NYC. I was losing my hair A LOT & I was super sleepy all the time. Eventually the hair loss got so bad and depressing that I flew out to NYC to find out what the hell was wrong with me. After countless blood work, urine tests, and doctor visits, I was finally diagnosed with Systemic Lupus Erythematosus (SLE).

I was so confused bc I only heard about Selena Gomez having lupus, so I did my research instead of crumbling into sadness; KNOWLEDGE IS POWER. I cut all my hair due to the crazy thinning I had and embraced the new me as well as took back my control.

This was the beginning of my Lupus journey, thanks for reading 💗

[anonymousmama]

Sjogrens and Lupus 

Hello tumbloves. Truth be told I forgot I made this blog long ago. Now here I am back and hoping to find knowledge and maybe some good friends to help me on this journey. Recently after a very serious health crisis that lead to massive cervical spine surgery I found I am positive for Sjogrens Ss-B with SLE (Possibly?)

Sadly I do not have insurance and do not qualify for government health insurance but also can not afford a Rheumatologist. So, I am ignorant and screwed. Yay me! 😐🙄

I have been looking everywhere and I feel like I only keep stumbling on the same websites with the same redundancy. I still walk away with questions such as

How rare is it to have ONLY Sjogrens Ss-B ?

How long after the anti-bodies for SS-B are found does SLE show up?

How fast will all this progress without treatment?

I have known for years that something was wrong. That I wasn’t dealing with every day pain and tiredness. Yet seems like absolutely now one listened or took me serious until it was almost deadly and someone thought to try and figure out how I was in the shape that I am in. Now I am still battling pain, exhaustion, brain fog with what feels like the complete inability to process any incoming Input these days. Itching.. my fingers my wrist the bend of my elbow tops of my feet and so on. I feel frustrated with myself because even now knowing there’s a reason for why I am like this I can’t accept it I still find myself crying because I can’t remember things. Or I don’t have the same energy for my children and grandchildren. I feel lost and like there is no one around to talk with about what this is like or learn from so I might be able to understand where it’s going to lead.

any and all help is needed and wanted. Please follow me if you are living with either of these things or can just be a friend. - Anonymous Mama

[svartsvan]

I’m so sick and tired of being sick and tired.

[indianaminotaur]

Look mom! That's me! This year; I'll be participating alongside other streamers in this incredible charity event to raise money during Lupus Awareness month.

[lupuswalk]

Couch wanted

We are working on organising the hike in the Netherlands leg. Are you or do you know someone that lives around our route? Does this person also have a comfy couch? We would love to hear from you and would love to stay for a (few) night(s)!

[geektalkus]

Had insomnia for hours. Thanks lupus. Or maybe sensory overload. I would say the latter. One day I can fall a sleep in a middle of a sentence next I can’t sleep for 36 hours. I’ve taken my normal bedtime medication plus 5x 10mg melatonins & 2 of my muscles relaxer that’s supposed to help with pain & sleep. This is life. Unscripted. It just gets old being this way. #lupus #lupussucks #lupusflare https://www.instagram.com/p/CmGpi-TO_xR/?igshid=NGJjMDIxMWI=

[mcatmemoranda]

SLE is a systemic autoimmune disease that affects the heart, lungs, kidneys, skin, blood vessels, liver, and nervous system. Signs and symptoms include fever, malaise, joint pain, myalgias, the classic malar rash, and photosensitivity. The diagnosis of SLE is made using the American College of Rheumatology (ACR) or the 2012 Systemic Lupus International Collaborating Clinics (SLICC) criteria.

ANA testing and anti-extractable nuclear antigen (anti-ENA) form the mainstay of serologic testing for SLE. Several techniques are used to detect ANAs. Clinically, the most widely used method is indirect immunofluorescence (IF). The pattern of fluorescence suggests the type of antibody present in the patient's serum. ANA screening yields positive results in many connective tissue disorders and other autoimmune diseases and may occur in normal individuals.

Anti-dsDNA is specific for lupus.

Bottom Line: Antinuclear antibodies are the most sensitive marker for systemic lupus erythematosus and should be checked first when this diagnosis is suspected.

[myrnabeauty]

When you wake up flaring and all your plans blow up 🤦🏻‍♀️ You pivot and use one of your “spoons” to make a dupe for Starbucks Lemon loaf in the #breadmaker Is it good? Well I have a happy boy next to me licking his plate 😂😋 #lupussucks #spooniestrong #lemonloaf #pivoting #starbucksdupe #yummy (at South Lorain, Ohio) https://www.instagram.com/p/ChNxRXaJjHQ/?igshid=NGJjMDIxMWI=

[heatherjpp13]

Do I complain? NO! Do I ever tell you when I feel my worse? NO! I love my life & I live it to the best I can. My son is the reason I fight daily. My other prognosis' are just that. So I bleed...& I know because sometimes it won't stop...Anemia...I have COPD & Asthma, I have Kidney issues, yet I push through with my brain having issues from Lupus. I don't give up & I fucking live my life. I try to record daily because it's all I have for Tristan to remember. Life is short...love, live, & enjoy💜💜💜💜💜💜my cousin died from this disease & I miss her every fucking day!!! #lupuswarrior #lupusawareness #loinpainhematuriasyndromeawarenessday #sickpost #lupus #sle #lupusfighter #lupussucks #lupusflare #lupusawarenessmonth #lupuslife #lupusadvocate #lupusstrong #edsawareness #lupusproblems #lupussurvivor #ankylosingspondylitis #lupussupport #chronicillnessmemes #lupuswarriors #knowlupus #rheumatoidarthritis #lupusfoundation #crps #lupusfacts #chronsdisease #lupie #lupusnephritis #gastroparesis #fibrowarrior https://www.instagram.com/p/CfmuoJuFwVR/?igshid=NGJjMDIxMWI=

[pncrealty]

Oct. 2021 @ Embassy Church in Atlanta, Georgia! My daughter @marquette112 was in so much pain but wanted to go…So I drove her so she didn’t have to worry about getting around if she’s flew down alone. It was a Very Nice 2 day Service! #Atlanta #LupusSucks #LupusHasNoCure #Georgia #Church #Embassy https://www.instagram.com/p/CfC-LlStZNG/?igshid=NGJjMDIxMWI=

[essanceofafemale]

#fucklupus #lupusawareness #lupussucks #lhandsign #lifecycleofabutterfly #lupusawarenessmonth #lupusfighter #lupuslife #essanceofafemale #brandsfashionandfuturelegends #elbarrio #marketingandpromotions #promotionalservices #advertising #production #eventcoordinator #blogger . . 💜💜 https://www.instagram.com/p/CdlfXSVus7qto0SR7gefd84I29UrGOlKg3nCro0/?igshid=NGJjMDIxMWI=

[lupus-esque]

Hi there hunniez 🥰

Today I wanted to share part one of my prednisone journey since my diagnosis.

Tumblr did a weird thing when I added text box’s to my photos, so I hope you guys can read it well 😬 sorry….

Anyways, I’m a petite girl. I am 4’9” and at the time of my diagnosis I was probably 118 lbs. that was my normal. The heaviest prednisone made me was 127 lbs in 2019. Overall, mostly my face was what looked round. “Moon face” they call it 🙄, but I say “chipmunk cheeks” 🐿

Obviously the more steroids I’m on, the more water weight my face retains. That’s why I HATED when I would flare up again; and the flares were always dramatic 😐

The less steroids or none at all had me back to seeing a jawline, which always made me happy. I really don’t think I’m vein, but have always been small and fit, and seeing my face plump up was definitely an insecurity of MINE. We all have insecurities and loving myself through the prednisone process is something I always struggled with. Even as I type this on 24 mg of prednisone, I have to keep reminding myself that I am beautiful despite what this steroid’s side effects may cause. It’s super hard though at times, don’t get me wrong.

I’m looking forward to being tapered off of prednisone fully. Aside from the weight gain, it’s long term effects can be very damaging ☹️ (osteoporosis). So, hopefully the Lupus calms TF down so ya girl can have a jawline and strong bones 🤣🤣🥲

Love u hydroxychloroqueenz & enjoy those photos of my weight fluctuating faces from 2017-present 💜

[kamberleeandspirit]

Just keep going just keep fighting. 💜 #lupus #lupusawareness #lupuswarrior #lupusawarenessmonth #lupussucks #lupuslife #lupusfighter https://www.instagram.com/p/CdD9AQDlXqI/?igshid=NGJjMDIxMWI=

[chronically-bailey]

I just want to say that I am still disabled on the good days.

My disability isn't gauged on me using my cane or walker. Somedays I shower and brush my hair. Somedays I wear high heels and skirts. Somedays I can run and laugh and go out.

Those days, I'm not better or not disabled anymore.

Somedays I choose to wear a pajama shirt as a regular one or wear the same shirt or the third day in a row. Somedays I wear sneakers for the support and put my dry shampooed hair in the easiest style and spend the day on the couch.

Those days are still good days to me.

Somedays are so bad I don't leave my bed. Somedays I use my walker in the house and still can't go for long without needing to sit. Somedays I can barely speak because I'm in so much pain.

My disability isn't subject to how I feel on any given day. I will always have this.

Feeling better ≠ being better. Feeling better ≠ "fixed". Feeling better ≠ faking it.

I think that that's overlooked a lot

[wholesomerat]

Mini rant bc people suck

I am a massage therapist and the county that I work in doesn't mandate masks, regardless of the fact that all other counties surrounding us do! Now I am super grateful because my work allows me to enforce a mask policy, I am the only therapist there doing so and they send out a specialized text for me. I have had to refuse service a few times, but for most people are okay with it and they usually always ask why. The major assumtion is just that i take covid very seriously, which I do, but I also was recently diagnosed with Lupus and arthritis on top of some other medical issues so I need to be extremely careful. My job is very high risk for catching things, you are in a small room touching the person , so not much more danger for germ spread than that.

Tell me why when I inform people that I enforce masks to protect my immature immune system that their immediate response is things like "oh well I guess you can't do this job for much longer then" "arthritis means your hands will stop working eventually" "this is kind of a bad job for you then huh?" "Aren't you in pain all the time then, that'll wear you out sooner or later" among other similar statements. I understand people don't try to say these things with bad intention, truly, but holy shit has every single interaction made me want to cry. Which I then have to keep myself together for the next hour or two as I'm shut into a room with this person.

Please be kind to people. Don't comment on other people's illnesses when you don't know whats going on with them.

All of these things are so hurtful, I chose my trade fairly young and absolutely adore my job for its good days and the amount of people who have taken the time out of their days to put me down unintentionally is so fucking hard to deal with.