In February I joined my annual Make-A-Thing-A-Day group that gathers on FB. I bought supplies and spent the month playing around with Zentangle tiles, neurographic art, and a new set of watercolor magic markers (which are the bomb!). All low energy and very manageable.
With the new meds and the progress I'm making, I hope to make it back to the pottery by summer, but until then, I'm having fun!
#Zentangle #NeurographicArt #lupus #doodling #chronicillness @chronicillness
A question for #wheelchair users and/or #disabled folks: do you ever just dream of your feet touching the floor or even doing trivial things like going to the bathroom or transferring in and out of bed? My grief regarding things that I can’t do plays over and over again in my head. Anyone?
#disability
#actuallyautistic
#autism
#disabilityjustice
#mecfs
#lupus
#cancer
#mentalhealth
Any help with #ebikes appreciated, if anybody has expertise! I'm looking for one some time this spring to get more exercise. Because I have #lupus and chronic fatigue I'm hoping to have one that 1) has a step through frame and 2) can go without me peddling (a class-2 in the US?). I know I need to go try some bikes to see what might work, but I don't even know what to ask about or look for at a store! I don't need to go fast or far or offroad. Thank you!
My husband just thoughtfully explained to me that the reason I break out in cold sweats when I have no spoons left is because my soul is reaching into the time vortex to borrow spoons from my future self and the cold sweat is just vortex goo.
"Think of it as time residue," he added, helpfully.
‘Exciting’ new #lupus treatment could end need for lifelong medication - https://www.theguardian.com/science/2024/nov/08/exciting-new-lupus-treatment-could-end-need-for-lifelong-medication "CAR T-cell genetic therapy, typically used in cancer patients, could lead to cure for the disease, says expert"
Las enfermedades también me arrancaron los #libros. Pero las #bibliotecas se han convertido en inesperadas aliadas sin pisarlas.
Si no puedo ir a la #biblioteca mi hermana me la trae a casa.
Si queréis desconectar un rato de actualidad por el #DíaDeLasBibliotecas os cuento cómo nuevos formatos me están ayudando a leer con #DisfuncionCognitiva.
#312 Cómo retomar el hábito de leer con #brainfog
https://domandoallobo.blogspot.com/2024/10/312-como-leer-con-brainfog.html #EncefalomielitisMiálgica #pwME #Lupus #Fibromialgia #Sjögren #Autoinmunes
My hands are very important to me. I spent several years learning #ASL and eventually even got the chance to work FT as an interpreter in a school for a few years!
I always figured the fine motions I kept my hands busy with are a big part of keeping their dexterity *despite* the #Lupus and #arthritis, and I stand by that.
3/x
It's been a wild few days for me. About a week ago, I noticed a weird nodule on my palm.
I've had #Lupus for over 49 years now, and am used to the #arthritis aspects waxing and waning depending on whether or not I'm in full remission at any given time.
Sometimes my hands look like the witch's in Disney's version of Snow White, sometimes they look just a big knobby at the joints but fairly normal.
1/x
La cantante #Halsey tiene #Lupus Eritematoso Sistémico #LES (#SLE en inglés), como el mío -hay varios tipos.
Muestra el rash típico en forma de alas de mariposa 
Hace hasta que se vea hermoso pero pica, quema, duele. La advertencia de un lobo que debora por dentro.
Os dejo la pestaña del #blog dedicada a esta enfermedad autoinmune por si queréis saber más. Unos posts dan una visión general de la patología y otros, aspectos más concretos:
https://domandoallobo.blogspot.com/p/lupus-y-sjogren.html
#mastoblogs #Autoinmunes
New instance, new #introduction.
I'm Daisy, a 30s #queer #demisexual woman, living in a rickety old house in Oklahoma with 3 #cats. I'm totally blind, so the use of alt text is mandatory for me to follow you. I write #poetry, voraciously consume all the #books, obsess over #horror, should be in jail for my crimes against plantkind in an attempt at #gardening, and listen to nonstop podcasts and indie/folk music.
I would like to be a librarian if I grow up, or a social worker of some kind, or an editor, or. There are a lot of things to be and do and love in this world. My life's work is to dig them from the ground with my bare hands and hold them up to the light. In the coming year, I would like to start learning to bake, knit, read tarot, and roller skate, and learning to play guitar is a more ambitious long term goal.
I don't talk about these things much, but I live with #lupus, #ADHD, #PTSD, and excoriation disorder/skin picking. I've been in therapy for 6 years now and I'm mostly thriving.
I'm a #leftist and very firm about it. Cis but a supporter of trans rights, white but a supporter of BLM. ACAB, land back, free Palestine, etc etc.
Sunny.garden was one of the first instances I joined last year when I first came to Mastodon, but I wandered away from it for various reasons. I'm happy to be here now and I hope it will be a good and cozy home for me. I'm already delighted to have 3 times as many characters as I had before.
