hi all!
I have SLE/Sjogrens/PsA.
I’m currently on Benlysta for SLE and my rheum hoped it would help Sjogrens. My SLE disease activity is so low on Benlysta.
It did not help Sjogrens, so he’s thinking of switching to Rituximab. I have to switch anyways to treat PsA - too many meds were crossing.
I’d love to hear any experience on Rituximab instead of Benlysta.
I am currently taking Benlysta for Lupus, and my rheum hoped it would off label help Sjogrens.
It didn’t, but it massively helps my SLE - so he’s thinking of a switch to Rituximab. I also need to switch anyways so I can treat psoriatic arthritis. Too many meds crossing.
I’d love to hear any experiences on Rituximab for Sjogrens.
Just having a sad moment.
I put years into building a passionate social work career, and when I got sick it felt like I was just thrown out and forgotten. I’ve struggled to find any accommodating role since, even in a field that’s supposed to advocate for and support disabled folks.
We’re taught to advocate for clients with disabilities, but when the employee is disabled it suddenly becomes a problem, and it’s been incredibly disheartening and honestly really pissing me off.
Everything feels unnecessarily difficult for us as a community. Trying to work, trying to access accommodations, trying to maintain some kind of purpose or quality of life - it all feels like an uphill battle.
And what’s frustrating is that when disabled people try to find ways to adapt, like remote work, flexible opportunities, volunteer roles, accommodations, etc., there’s often this attitude that we’re asking for special treatment or trying to take the “easy” route. In reality, most of us are just trying to survive while still participating in society in whatever ways we can.
I’m tired of constantly trying to squeeze and fight myself into systems that were never designed for people with chronic illness or disabilities. I’m tired of how isolating it feels. And I’m tired of how little people seem to understand the amount of grief, frustration, and exhaustion that comes with having to fight this hard just to stay involved in the world.
We have a wealth of knowledge from our lived experience that we can bring to the table. I’m so sick of systems keeping us from getting to the damn table.
Hey all!
ISO: remote volunteer positions
Trying to stay relevant in the field after unexpectedly becoming severely disabled last year. I have a lot of experience in different areas of the field.
Any leads would be greatly appreciated :)
Has anyone cracked the code for extreme dry nose? I’m talking nose bleed dry or crying in pain dry.
What I’ve tried
If anyone has the winning combo please let me know!
Also for side context, I also have Lupus and my dryness/gum pain from Sjogrens is the MOST painful thing I’ve ever experienced. I get so irritated that people underestimate this disease.
I’m an MSW/RCSWI and I’ve been thinking about a gap in healthcare navigation for people with complex medical needs - appointments, referrals, insurance questions, and understanding care plans.
During my own experience as a patient (I have 3 autoimmune diseases), I see gaps in support for navigating the practical realities of complex healthcare systems. I often wished for additional lived-experience-based guidance to help with organizing appointments, care coordination, and making sense of fragmented services. I found private pay patient advocates, but that is something I could not afford at the time.
I am now in a strong place to offer *volunteer-based peer case management / systems navigation support* (non-clinical, not therapy, not billed), focused on helping people organize care, learn self advocacy skills, prepare for appointments, identify providers/resources, and navigate complex healthcare systems.
This would be based on lived experience navigating chronic illness/disability systems and my professional social work training, but outside of a formal agency structure.
This is something I am incredibly passionate about because I lived it for many years. I am just in the exploratory phase, so other social worker opinions are valuable.
Curious if models like this already exist and what ethical considerations I should be aware of. Thank you :)
Hey all, MSW level social worker here.
Could anyone share their experience of being a social worker in WNC?
For context, I worked with a variety of populations as a SW in Alabama and then Florida, so I have experienced a lot.
Looking forward to getting a better gauge of the SW experience in WNC :)
Just venting to a community that can actually understand.
My husband and I were close with his family until my diagnosis of 3 autoimmune diseases. They live right down the road. At least we thought we were close.
When I was diagnosed, I didn’t hear a peep, except to invite us to vacations and parties. Nobody checked in and nobody spoke about me being sick.
They keep inviting us to pool parties and beach vacations. We directly explained I can’t attend those events because of extreme photosensitivity due to lupus.
There is no consideration for me at all. I’m absolutely not expecting their world to revolve around me. But I feel it would be SO simple to say “hey, why don’t you come over at X time since we will be outside in the sun” or “hey there will be shade here if you’d like to join us!”.
Just ANY thoughtfulness would be appreciated. They just pretend like it doesn’t exist?
We recently realized they don’t even know what I’m diagnosed with. I feel so othered and like I was thrown away because I got sick.
I stopped communicating with them or going around. I don’t want to be anywhere I’m not considered. Just still in my feelings about it.
Can anyone else relate to family just dipping out at your lowest?
Hi!
My favorite artist is going on tour this fall and I would really love to get tickets.
The stadium in my area is *huge* and I am concerned I wouldn’t be able to handle the long walking and standing long periods.
I also understand (I think) that ADA seating is specified for wheelchair users. I do not regularly use mobility aids or own any at this time.
How have you accommodated yourself *if* you attend these events? I yearn for a semblance of normalcy - I’m tired of giving up things I love.
Hi friends!
32F, I have SLE/Sjo/PsA and I’m trying to figure out how to make more autoimmune friends.
I accidentally made the sweetest fellow lupus friend from this group and having her in my life has been such a joy! We share the same outlooks and mentality, and have uplifted each other in the worst of flares.
How are you guys making friends with other folks with autoimmune disease? I would love to connect with more folks, but also respect that Reddit is anonymous for a reason.
If anyone has any resources or ideas, I’d love to hear :)
Hi,
I am newly diagnosed with Lupus at 32, which means I can no longer sun bathe or have any long sun exposure like I have my whole life.
It’s been a huge shock and grief ridden experience in general. To add assault to injury I’m also now pale, and I haven’t been pale…. ever. I feel ugly and a huge loss of my identity. I’m FL based, so the sun has been my identity.
I’m using Bondi Sands, and it hasn’t turned me orange like others. I do like it, but it’s not the same as my true tan.
Does this get easier? I’m exhausted trying to upkeep this. I just want to feel pretty again.
Hi all!
How are you all getting your self tans to last? Especially with showering every day?
I also don’t wear makeup, but self tan my face. With washing my face daily it comes off so fast.
I currently use Bondi Sands, it’s the only one so far that doesn’t turn me orange.
Any advice is greatly appreciated!! 🫶🏼
I was offered a remote role in my industry (medical), but must relocate to NC.
I am torn between Asheville and Charlotte. Right now I live in a more rural area outside a large city, which I like.
*I also have two horses who will be coming with me, so the open land topography in the surrounding Asheville areas is rough and steep. Not ideal for my old guys*
Asheville: I love the outdoor and young/vibrant scene. But the topography of the area feels like houses are stacked on top of each other. I currently have a few acres where I live, and would hate to give that up to be on top of my neighbor.
Charlotte: I love the food scene and it’s a beautiful city. Great amenities. But I’m not keen on being in a city. Not sure what the hiking feels like compared to Asheville.
All in all, I think I may be looking for a good in between spot to land. Somewhere that has more open land than Asheville, nature oriented, but also has a young professional crowd too.
Are there any hidden gems out there?