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Living with dying

I hide from glaring eyes,
So they would not see
This monster eating away my insides,
Taking my life from me.

I wish to be alone,
On some abandoned island,
Far away from the world,
Where I’d be allowed to cry
And scream
Until there’s nothing left inside me.
But this demon in the shape of a butterfly
Strangles me in my dreams.

An unrelenting flood.
I gasp for air,
Just one more breath,
As my lungs fill with blood.
I pray for death.

I am afraid
That someone might notice
The little bit of sadness in me.

I want to be alone,
Broken and alone.

But deep down, I yearn to be seen,
By anyone at all.
And to be held,
Just for a few moments,
To feel another heartbeat.

I don’t dream anymore.

If I did,
I would dream of love,
A healthy body,
And a life without disease.

In a lush garden,
With vibrant flowers and honeybees.

But I no longer dream.

I live in a world that wants me gone.
People.
The sun.
My body.
And even myself.

I wish I was enough.
Enough to be loved.

Diagnosed SLE, Sjögrens, Fibromyalgia, along with several more autoimmune diseases. I have been dealing with vision issues for about 4 years. My vision fluctuates from day to day. Some days my glasses are great and some days it's as if I have a completely different prescription. One day my eyes are incredibly dry while others they are constantly watering. I have an Opthamologist who specializes in treating dry eyes. We have tried all the medications available to treat my symptoms with no improvement. Has anyone else dealt with similar issues? If so, what have you tried and has it helped improve your vision issues?

I had what I think was my very first lupus flare.  I was diagnosed with RA in May of 2025 and SLE in August of 2026.  Even back in May of 2025 my rheumatologist said she was probably going to be diagnosing me with lupus at some point and for the most part she would try treatments that would cover both conditions. After getting a definitive diagnosis We decided to try Rinvoq but I needed to be off my RA meds for a couple of weeks before starting.

I was unprepared for what we are calling my first lupus flare. This was the first time since May of 2025 I wasn’t on a DMARD or prednisone.  The scary part was my legs and feet.  My RA is primarily my hands and wrists.  During this flare I swore I could feel pain in each bone and joint in my feet and ankles individually.  I also had some really bad leg pain and a few times I felt like my legs were going to give out on me.  I am not sure what exactly I was expecting but this whole episode scared the hell out of me.

Luckily I was able to start the Rinvoq and I must say I am impressed.  After two weeks I am at about 85% remission with the RA and my low grade fever, malar rash, and pain in other areas of my body are gone with zero side effects. I also have autoimmune urticaria and my hives and facial swelling are greatly reduced.

I am just so glad I am back to what passes as normal there days!

Dx with APS in 2009. Even got a second opinion using the lab results from the first doc.

At recent appointment I talked to my doc about APS. She looked at my old labs and mumbled "oh, hmm, only weakly positive. I must have tested again a few times to make sure" She didn't. The look on her face, knowing she messed up. Then she brought up my 2 miscarriages in the early 90's really confirmed it, but I did have 2 live births. Made her run the tests last week, definitely do not have it.

Just a bit upset... the constant worry, baby aspirin, avoiding flying, long drives, no HRT... Wonder how long I didn't have it. Angry she didn't follow protocol in 2009.

I still have lupus but no APS. So a bitter sweet moment.

I have always had flare ups before my period, it’s actually the reason I started seeking diagnosis. But when I was put on plaquenil that pre period pain got a lot better.

but then the past few months it has just been brutal. the pre period pain used to only last 3-5 days but now it is starting nearly 2 weeks before my period and coming on much stronger than ever before. so today when I got my period I was actually pretty happy because now it means there is a countdown to when the pain will be over instead of just increasing day after day without end…

I did recently get diagnosed with dermatomyositis and started Cellcept which could have something to do with it all but I’m not sure.

I do have a gynecology appointment in two days to get a Pap smear and plan to talk about this all but I haven’t brought it up with my rhuem because of all the horror stories and dismissal I have heard. I meant to talk about it in my appointment with him last week but chickened out.

so mostly posting this to vent but if anyone does have tips on ways to mitigate the pain or to talk to providers please let me know

this will also be my first Pap smear and basically my first gynecology appointment (have had a few ultra sounds through the diagnostic process) so if anyone has any tips on that as well it’d be much appreciated

I have hair loss as a side effect of Benlysta. If I keep taking it, will it eventually stop, so my hair is just thin, or will I go bald?

Hi everyone, I'm an independent singer struggling to pursue my dream while dealing with lupus and problems affecting my vocal cords.

My health and energy can be unpredictable, and it's frightening not knowing how this might affect my voice and future as a singer. Being independent without a label or team makes things even harder, especially when the music industry demands constant content, networking and consistency.

I love music and don't want to give up, but sometimes I wonder whether I'm being unrealistic.

Has anyone here pursued singing with lupus, vocal cord issues, or another chronic illness?

How do you manage your health while working towards your goals? I'd really appreciate honest advice or hearing from anyone who's been through something similar.

Thank you for taking the time to read this. Sending a big virtual hug to all lupus fam 🫶🏽