#living with lupus
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Sometimes it feels like people kinda forget your pain when it’s chronic.
When someone healthy/able bodied gets sick or injured, people will pour out their support and understanding right away, which is good, obviously.
But after a while, people get tired of hearing about it.
They get tired of having to work around it, tired of having to be understanding.
But just because your empathy fades, doesn’t mean our pain and grief does.
I’m so, so tired of my pain. Of having to be understood. Of not having any chance to have a proper career, or dreams, or relationship.
I’m tired of my hands not working enough for me to write, draw and craft, which is what is normally keeping me going.
They just keep getting worse.
I’m tired of the pains related to my endometriosis and pcos making me unable to eat properly, get any exercise, and for making me bedridden more and more these days.
I’m tired of having to beg for support in what little buisniess I manage to make sure I survive during my rough recovery periods after surgeries and bad flare up’s.
I’m tired of knowing my life will not be a long one.
I’m tired of complaining, of being in pain, of grieving, of feeling like a burden.
There are no breaks for me.
That doesn’t mean I get used to it. I will never be used to it.
And I think I should be allowed to talk about all of this without feeling like a burden.
I probably won’t ever get to that point, but this is me trying to get there.
By being open and honest, and hoping that at least one person takes the time to read.
If you’re still here, still reading, thank you. It means the world.
Be kind to those around you who are like me.
We’re not happy about our situations, either, but having people willing to stick around and listen makes it a little easier to survive.
Thank you ❤️🩹
#chronic illness#chronic illness awareness#chronic illness psa#chronic illness support#disabilties#disability#lupus#lupusawareness#living with lupus#endometriosis#pcos#cfs#scoliosis#chronic migraine#chronic mental illness#mentalheathawareness#irl tag#personal
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god, how i hate having lupus. everyone thinks im fucking helpless, and they underestimate me. and it fucking sucks because normally they're right. on certain days i physically can't participate in my hobbies bec i'm in horrible pain. because of it, people just think im lazy and disgusting. i can never win. i can't do anything right, i don't know why i thought i ever could.
#lupus#lupus warrior#systemic lupus erythematosus#autoimmune#autoimmine disease#chronic illness#chronic pain#chronically ill#joint pain#chronic fatigue#disability#arthritis#living with lupus
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one time i was on roblox and i said i was physically disabled and someone was like “whats wrong w you” and i said i had lupus and possibly other stuff and they were like “thats not a disability you gotta be in a wheelchair or missing limbs or something” like….bro how is that NOT a disability 😭😭
(also this is no dig at anyone whos a wheelchair user or has limb differences i love/care yall [platonically] im just sick of ppl that have very narrow views of disability)
#this happened a while ago so im kinda paraphrasing here but yeah#ableism#disabled#physically disabled#lupus#systemic lupus erythematosus#living with lupus#cripplepunk#cpunk#cripple punk#roblox#the game was rate my avatar btw bc ofc it wad#was*
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Abide
a space of naked skin,
pale as sour milk, at the
crown of my head, hair
falling like spiderwebs
covering nothing
my liver swells past the
boney constraint of ribs,
a hardness that calls my
fingers to rest there,
a blind of fingers and palm
this lump of flesh presses down,
intruding into empty space,
into my bladder and bowel --
both scream urgency, even
empty, they are haunted
the vertigo crashes over me
like ocean, dredging up scattered
light, fractured seizures, the
rattling breath of dying neurons
i am a house, falling
cobwebs and cages, rickety beams
and the wail of lost souls, lights
flickering, death making his
inspection, finding the rot
yet still, i live
yet still, i abide
#poetry#spilled ink#inkstay#poetryriot#writerscreed#poem#poets on tumblr#twcpoetry#allpoetry#lupus#systemic lupus erythematosus#living with lupus#variegate porphyria#porphyria#chronically ill#chronic illness#actually diabetic#hair loss
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Sooo…I had a follow up with my hematologist.
Guess who starts yet another cycle of iron infusions next week?!
This lady 🤦🏾♀️. I’d go into detail, but at this point who knows what the real answer is 🤷🏾♀️. I’m just venting lovelies. Tired of being tired. Tired of being out of breath. Tired of lupus flare ups. Sick and tired of being sick and tired.
Yes, you get used to it, but man! I want to get back to a place where I have enough energy to do the things I love. Welp I guess it’s good I ordered all those damn books lmao! Now I’ll have new reading material for my infusion appointments😆😩🥹.
Okay enough of being an emotional lil bish. Back to being a sensitive thug😆😂🤣.
How my babies doing though?!
#berberriescorner#just venting#i’m just tired#anemia sucks#iron deficiency#lupusproblems#life with lupus#systemic lupus erythematosus#lupus nephritis#lupusfighter#living with lupus#lupuswarrior
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If all else fails, remember, you can always wear a 😻🕺🏼 #catsuit!
#glitzglamfuckery#coloringbookforme#brandeebleue#ggf#peachology#orchid#art#lupies#lupusawareness#living with lupus#canis lupus#systemic lupus erythematosus#lupus#lupus discoid
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So, it's always fun when you hit a certain number of autoimmune and chronic pain conditions and doctors are like nah my guy we'd like a less complicated zebra please.
Oh well.
#life with autoimmune disease#life with chronic illness#life with chronic pain#fibromyalgia#fibro problems#systemic lupus erythematosus#living with lupus#rheumatoid arthritis#living with rheumatoid arthritis#the Rhupus c c combo platter causing doctors psychic damage#which one of these is the problem?#no idea!#all of them probably#i'm so tired
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November was full, it was love
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Update on Haunted by the Opera Ghost
So. I'm still here. Suffering from severe writer's block and an extreme lack of motivation, but still here.
This chapter has consistently kicked my ass for months now. I think I've torn it apart and rewritten it like four times now. Not an easy feat considering that each rendition was over 2,600 words. And with each rewrite, my confidence dwindles and my insecurity over whether or not I should even be doing this grows. This is a pivotal chapter and I feel like I'm in a war with my characters lol. I have this carefully constructed plot with things I can and cannot do in order to progress said plot and stay true to my ending, and my characters are literally FIGHTING me.
That's a thing, right? It's okay. I'm okay.
It hasn't helped that I had surgery to fix a failing knee implant back in May, and the surgery actually made things a shit ton worse. My knee literally disintegrated while they were in there. So guess who now needs a total knee replacement at the ripe age of 40 instead of the partial they originally had done back in 2019? This girl right here. So yeah. Recovery has been a bitch, and the constant pain (and Lupus--FFS I cannot make this shit up. God I've had a fucking hell of a year. Sigh) and not being able to do simple things like laundry, housework, and yard work (seriously, the only thing I have wanted to do this summer is make my backyard look pretty) has brought a good dose of depression along with it. The only solace I've found lately has been playing the new Zelda game and avoiding everything else.
Anyway. This right here is an attempt to pull myself up by my boot straps. I've been writing fairly steadily the last couple of weeks, and while the progress I've made is small, it's still progress. I think I'm finally satisfied with the latest rewrite and have set myself up to finish the chapter in a way that doesn't conflict with my overall vision of this story. I'm also slowly responding to reviews on FFN and AO3, so if you haven't heard from me yet, you will. Just give me time. Every day is a battle right now, but I can get through this.
So yeah. Thank you for coming to my pity party. There will be party favors at the door. In the form of a chapter update. Hopefully very soon. If you read this til the end, you are a saint and I love you.
TL;DR - Life sucks but maybe a chapter update this weekend???
#haunted by the opera ghost#update on chapter update#writing#writer's block#the worst#knee replacement#living with lupus#thank you for sticking with me#I'm okay#really
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Will I ever loved by someone?
Will their heart race at the sight of me? Will we bring each other comfort in our touches? Will I be enough as broken as I am? Can someone look at me and see all of me,and still want me? Will I have babies that look like us and laugh like me? Will I be grounded by them,and loved no matter how sick I am? Will my dad walk me down the aisle and give me away,or will I always be this way? Will I ever have somebody need me? Will anyone ever love me the way I can love them? Will I ever get my “love for eternity?”
Will anybody want me?
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My medicinal botox that I need to get tomorrow have gotten sooo expensive, and I have another perscription I need to get before the con this weekend, and I genuinly cannot afford it so if anyone can help…
ko-fi - paypal
I know times are tough for everyone, and don’t expect anything!!
I just figured that I never fish for tips (nothing wrong with that either!!) so now is as good a time as any! 🥺👉🏼👈🏼
#donation post#sorry :(#chronic illness#chronic illness help#chronic migraine#lupus#living with lupus#lupusawareness#migraine#endometriosis#irl tag#personal
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So are we as immunocompromised people ever going to be able to talk in depth about the extent to which our lives have stagnated since the start of the pandemic or do we have to let that rotting feeling fester because it makes everyone else "uncomfortable".
[Vent below cut.]
I feel like I quite literally stopped growing both mentally and socially which sucks and has become a lot more evident to me as I see everyone around me thrive and move on.
It doesn't help that everyone has also just kind of... Decided to pretend the pandemic is over, stopped masking, stopped taking precautions, and gotten rid of any semblance of feigned consideration they had for disabled people in general. It's like it was a tiny hiccup in their lives while the rest of us watched eachother die purely because we were made martyrs by able-bodied people. And they just get to... Move on after all that.
Like this mass gaslighting of disabled people is absolutely eugenics at play but I'm not clear-headed enough to put the words together right now. Something about not wanting to give disabled people the resources they need to process severe trauma from a global disabling event, because that'll probably get rid of a lot more of us much faster. Mind you, the bulk of the trauma was from the rampant ableism we were forced to witness and experience, even from friends or family.
It's like I was waiting for this big eureka moment where everything that happened would make any kind of sense and I'd be able to say I got at least one thing out of the entire ordeal like everyone else and it just... Never came. And one day I kind of just realised... Oh... I'm literally never going to get over this lol. And that's something we have to deal with entirely by ourselves.
#personal#text#spoonie#chronically disabled#chronically ill#living with lupus#lupus#I've been thinking for so long#of how to put this feeling in words#i think this is.. extremely close#Save for some very existentialist ramblings#vent
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From the book ‘Radiant Poppy’
#poetry#writer#personal#chronic illness#lupus#invisible illness#poems and poetry#original poem#poet#short poem#poems on tumblr#poems and quotes#my poem#poem#chronically ill#living with lupus#systemic lupus erythematosus#spoonie living#spooniestrong
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Something that’s definitely talked about a lot is being bigger sized. But growing up I didn’t see a lot of dark skinned women on media so unfortunately I hated being black. And I also happen to live in a southern area where everyone’s type is skinny and white. So I didn’t get any attention which technically I don’t need to know I’m good enough or pretty because of boys attention. But sometimes it’s nice right?
And then when I was 11 I was diagnosed with a chronic illness. Taking steroids and infusion medication which made me gain more weight. So there’s just something about being curvy, black, and chronically ill that as I get older now at 20 I wonder if I’ll ever get over that. I love fashion, buying clothes and actually wearing things that fit me. And seeing all these beautiful girls and they’re amazing outfits on social media really makes me happy. But every now and then I’m reminded by how lonely I am. Because even just at 20 it seems everyone around me is dating and or married. It has had some kind of relationship or situationship.
So I’m just saying all of that to say that I’m better than I was. I’m comfortable in my skin and I love my style. But some days I’m reminded of how lonely I am. Even at work my coworkers talk so happily about they’re husbands and boyfriends and how easy it is to be happy. And it feels like a slap to the face every time.
How badly I want someone. Someone to make me smile and laugh. Someone I can be unashamed with. Someone who brings me any flower even wild flowers because they know I just love flowers. Someone I can make lunch for and surprise on my days off. Someone who will surprise me with the best place to watch the stars because they know every time I get home late enough I take a moment to look at the night sky. Someone that will hold me when we argue to remind me that he doesn’t hate me. That it’s okay because I know it’ll never be perfect.
I just really feel like I got the bitter end of the deal sometimes. And now I have to start infusions again and who’s going to want to spend the rest of there life with a constantly sick girl. If they didn’t try to get close to me before they definitely won’t now.
Anyone relate?
#thoughts#plus-size#midsize#curvy size#curvy#sad thoughts#thinking out loud#feeling insecure#lupus warrior#lupuslife#living with lupus#chronic illness#systemic lupus erythematosus#why am i so insecure#insecure#seriously though#my thoughts
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Weight gain is a known possible side effect of some lupus medications, especially Prednisone. I take prednisone daily and have the notorious “moon face” that this medication is known to cause, which can really affect my self-esteem sometimes. This poor woman has the world bullying her over an unavoidable consequence of the meds she takes to keep herself alive and that is despicable. I am grateful that Selena Gomez uses her platform to spread awareness about lupus, so it really hurts my heart to see her getting picked for her weight, especially since it comes from her taking care of her health by taking her meds 💜🦋
#lupusadvocate#lupusawareness#living with lupus#lupus warrior#chronic illness warrior#chronicillnesslife#we need to do better
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