#lupusproblems

[berberriescorner]

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

[bella123405]

i’m expected as a disabled person with a terminal illness that will very likely kill me one day to work a pretty difficult and physically demanding job, take care of our 5 dogs, clean the house, do dishes, cook dinner, do laundry. and still somehow try to save enough money and find the time to go to school and start a new career. plus go to the millions of doctors that i have to in order to stay alive (idk why i am anymore) plus try to apply and get financial assistance for all my medical bills and then pay it all. plus grocery shopping which is incredibly difficult bc of my many health restrictions and somehow still find the time to take my meds and take care of myself and get enough sleep and spend time with my spouse and talk to my friends and family. i’m fucking done. i’m not cut out for this shit

#disabilties #disabled women #disabled #autoimmine disease #lupusproblems #tw depressing thoughts #depressing post #depressiv #sewerslidal #health #mental health #fuck capitalism #i hate america #healthcare #actually bpd #bpd vent #bpd #actually autistic

[svartsvan]

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

#autoimmunewarrior #lupusproblems #lupussucks #lupus warrior #little spoon #spoonie life

[nagisama]

I have lupus and my hands are shaking so bad I feel like I’m about to die. Any advice would be rad!!

#lupussucks #lupusproblems #lupusflare

[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=

#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

[unrepentant-thinner-part2]

Had an “emergency” call from my doctor’s office awhile ago saying they had my bloodwork back and need me to come in asap. My autoimmune issues are running amuck and I’m going back on B12 & D injections…..

There are days that I really just hate all of this but, I have to remember that there are others that have it way worse in this world health wise. I’m still super disappointed but nothing I can do about it. Planning on going home & doing another 2 miles then pricing stuff out for tomorrow’s garage sale. Going to just try not to think about health related stuff for awhile.

#lupusproblems #lupus warrior #fitblr #wlssupport #wlsjourney #wls #bariatricsleeve #bariatricsurgery #vsg #vsgsurgery #gastricsleeve #wlscommunity #bariatriccommunity

[chronically-bailey]

Hey everyone! Long time no post!

So we did find the gene causing my symptoms, its the ADCY5 gene on the 3q21 chromosome. It causes dyskinesia, dystonia, focal onset aware seizures, facial myokymia, and myoclonus, along with other symptoms that may or may not be associated (more research is needed). Essentially, the ADCY5 gene is responsible for turning ATP (adenosine triphosphate) the energy carrying cells to improperly convert it into CAMP (Cyclic adenosine monophosphate) the signals sent to your cells, causing my cells to receive those signals when not needed or to not receive the signals when needed.

It's both good news and bad news,

Good news is we finally know what it is and why my symptoms have been happening.

Bad news is that it's extremely rare, less than 400 people in the world have been accurately diagnosed with this disorder. So there is little research, no prognosis for the future and how that looks, and no set treatment plans. It's basically "fuck around and find out" for all of it.

I don't know if I'll be able to drive, if my symptoms will improve, stay the same, or get worse. It sucks, but it's all they've got.

They (my Dr's) are sending my to see a geneticist at the University of Washington in Seattle (luckily only 45 minutes to an hour away from my house) to see a doctor that specializes in this disorder to see if she can help with anything.

I'll keep you all updated,

Love y'all! ❤️

#actually disabled #autoimmune conditions #cane user #chronic fatigue #chronic pain #hypermobile ehlers danlos #ibs c #lupusadvocate #lupusproblems #mobility aid #neurodivergent #potsie #seizures #autistic spoonie #spoonie #postural orthostatic tachycardia syndrome #ambulatory wheelchair user #disabled isn't a bad word #walker user #wheelchair #adcy5 #dyskinesia #dystonia #myokymia #rare disease #rare disorder #1 of 400 #genetics #genetic disorder #chromosome 3q21

[1970smomma]

I suppose every new chapter of my life has to start with some new illness doesn’t it? Mother Nature likes laughing in my fucking face

#chronically ill #lupus #lupussucks #lupusproblems #lupus spoons #systemic lupus erythematosus #spoonie #chronic illness #fibromyalgia #fibro

[burnedouthippie]

Finally got accepted as a new patient with a rheumatologist after months and months of waiting 🙌🏻🙌🏻 pray the treatment process treats me well yall.

#lupussucks #lupusflare #life with lupus #lupusawareness #lupusproblems #me #personal #loopy babes unite

[qveenjordin]

I’m really just tired of acting like I’m okay.

The truth behind it all is that - no one asks for an illness they can’t control. & no one wants to be a warrior all the time. no one wants the constant “compliment” that you are strong, because you made it through yet ANOTHER trauma. no one wants to be afraid to live because you’re waiting for the next “trial/flare” to happen. No one askes for this.

I’m still processing being near death. Still feeling so alone because regardless of the support and love that I’m getting ( that I appreciate every second of) there are only a few people that can understand what I’m going through. I’m thankful to be alive. But, I’m not ashamed to say I’m angry, exhausted, and sad that this is my life right now.

#lupuslife #lupus warrior #lupussupport #lupusproblems

[learntolive-again]

I miss being able to go out in the sunlight

#lupussupport #lupusproblems #lupusawareness #systemic lupus erythematosus #autoimmine disease #autoimmune #chronic illness #chronically ill

[nasty-little-rat-boy-man]

Throwback to when I was undiagnosed and because I’m assigned female at birth every doctor that I went to for my vomiting, rashes, and abdominal pain said it was just my uterus and gave me birth control, and when none of the symptoms changed they just said “wait a while it’ll work eventually” turns out it wasn’t my uterus, I have lupus, and the abdominal pain was my immune system trying to kill my internal organs, I had to be hospitalized for a week and have permanent kidney damage because my doctors ignored me for TWO YEARS!!!!

OH and I forgot to mention that I was already diagnosed with arthritis as a young child, so if my doctors had even checked my medical records ONCE they would have known to check for signs of inflammation and immune response in my blood tests, but they just DIDN’T!!!

#lupusproblems #chronic illness #hospital #doctors ignoring patients #fuck doctors

[peterhollandkait]

Help needed!

Hey y’all! I have a friend with newly discovered celiac disease and potentially lupus and she is having trouble coming up with meals. She is also lactose intolerant. If anyone has any advice or any yummy meals and snacks that my dear friend brittany can have, please lmk!

#gluten free #meal planning #celiac #lupusproblems #lupus flare #personal #send help #lupus #asking for a friend

[svartsvan]

Kim kaldı ki? Çok büyüdüm sayende.

#lupusproblems #sistemik lupus eritematozus #otoimmünhastalık #otoimmünhepatit

[ravenshivers]

Dear Butterfly; Dear Dragonfly,

Because of you, I have to lie. Have to pretend I'm fine.

You've helped me to identify, to find my kind. But why?

Something I wonder every day. The price I have to pay

simply to be me. Don't you care? Can't you see?

I'm not one to cry out, "Why ME?" —not specifically.

I know that I do know the why. Your wings; they've helped me fly.

But it's always half truth and half bullshit.

Sometimes it overcomes, and I can't handle it.

You know me well so I've not much more to say but

there are times I wish you two would fly away.

But, I know you'll forever stay. Grow more attached.

Leaving me dog sick, nerves wracked.

The only alternative is death.

And I'm here. Here for each and every breath.

My future is now and that is where I shall live.

Thank you for helping me learn what I can give.

#lupuslife #systemic lupus erythematosus #lupusproblems #lupus #lupusfighter #bipolar disorder #bipolar depression #bipolar diaries #mctd #butterfly #dragonfly #symbolism #symbols #disease #my notes #poem #spilled poem #spilled prose #spilled thoughts #spilled poetry #spilled ink #spilled tears #truthful #writing inspiration #love poem #my words #my writing #writers on tumblr #writeblr #poetry

[ben-c-group-therapy]

I haven’t had pain so bad where I wanted to actually cry, in so long. Do more than just your usual housework and you feel everything 5 times more. From my scalp, to my joints, muscles and down to my bones, I feel pain and discomfort.

I need serious cuddles and kisses to take take my mind off the pain.

Feel free to suggest anyone.

#lupus #chronic pain #pain #lupusproblems #😭 #send help #pain relief