u/picklethefreak

hi all! I started an application on May 4th and just logged back in to my SSA account only to see that it was marked as submitted and in step 2 of review. There is no option to return to saved applications. Is this something I should have expected? I did not complete or submit the application and honestly most of it was blank, including anything regarding why I'm applying, or my doctors' contact info. What would be the next best thing to do? Should I call SSA or go to the local field office?

I just got my UCTD dx and I'm feeling very drained. It was not an overly long process, but it was very frustrating. I still feel that my diagnosis is conservative, as I have a positive ANA (1:1260) and anti-Smi, which I think should put me on the side of SLE. I have fewer symptoms at this time in my life so I think that's why the rheum is erring UCTD rather than SLE. I have had more symptoms at other times. I'm just ready to start Plaquenil. There was no time for patient education so I actually don't know what I'm supposed to do other than what I've read online.

Questions in no particular order:

1. I might be fishing for validation on my opinion that UCTD is overly conservative. But I appreciate push back if it's not. Do any of you have positive anti-Sm and still not dx SLE?
2. Do I have to start wearing sun protection more frequently with UCTD? do you have favorite affordable brands of UPF clothing? (I'll forget sunscreen)
3. Can Plaquenil improve fatigue?
4. Can Plaquenil improve cognition? (fatigue and cognitive issues are my biggest concerns as they impact my ability to work)
5. Is there anything else you think I should know right off of diagnosis?

hello! this is U.S. based for context!

I've noticed my sensory sensitivity is like, 50x time worse this year. I am 28, almost 29. It is becoming very difficult to go into the grocery store (other stores too, but I don't shop much) because of all the sounds and lights. I have long covid and suspected systemic lupus and it's hard to tell where there is crossover. Also, complex noise, or multiple competing sounds in one environment, are becoming increasingly physically painful. I have to be in many noisy environments to obtain services (like DSHS, the SSA, etc). Sometimes it takes multiple attempts to go do what I need to do because I might have a panic attack or meltdown due to the sensory stuff.

it's beginning to feel like I am hard of hearing. I hear perfectly fine, probably too well, but when there is complex noise, I feel so frustrated and physically sick, and I can't understand what people are saying. It helps to see lips. Do any of you use assistive tech on iOS or with an external device?

I've been trying to find an occupational therapist experienced in autistic adults but it's been really hard to do that with Medicaid (limited options). I have an OT for other stuff. So it feels like I have to do a lot of self-help.

I'm feeling a little nervous that sensory sensitivity will just keep getting worse as I age. It might be comforting to hear from older autistics and also to hear what you've tried to self-support with.