#uv sensitivity

[crippleprophet]

I literally have had a malar rash for over a week and my doctor blew me off bc I tested negative for my ana last year. Is there anything I can do to help with the burning sensation?

oh my god i’m so sorry, i know that pain is so fucking distressing + impairing and it’s absolutely neglectful of your doctor not to both run your rheum panel again & prescribe you a topical steroid for management in the meantime. jesus christ that’s so fucked, you don’t deserve this.

feel free to just skip this paragraph if this isn’t an option for you but if you’re able to access a different doctor i think it could be worth trying just for symptom management — when i was struggling to get in with a rheum i visited a dermatologist & while she unfortunately just recommended my future rheum put me on hydroxychloroquine without doing it herself, she at least gave me the steroid cream which helps so much with the pain. & that’s something a PCP who was actually interested in treating patients rather than gatekeeping care could prescribe even if they thought you have rosacea not lupus.

gonna divide this into type of strategy just so all my advice is clustered in the same post but some of this might not be relevant to you, feasible, affordable/accessible, etc. as always other folks feel free to add advice if you have any!

basically your goal is to minimize sun (especially UV rays) as much as possible, to your face especially but your whole body as needed.

immediate term:

stay indoors as much as possible + close the blinds/curtains

outdoors: sunscreen + hat + long sleeves/pants (loose/thin material in the heat)

if you drive, bike, or do another activity where your hands are exposed to sunlight, wearing gloves; UV blocking fabric is most effective but anything is better than nothing

for pain relief: i haven’t found anything that helped more than temporarily (other than the steroid cream obv) but an unscented lotion, aloe vera, or cream can help for a little bit. similarly damp soft cloths, baby wipes, or gel bead ice packs just kinda draped gently over your face.

longer term ways to limit sun exposure:

full curtains (possibly blackout curtains)

tinted car windows

UV-blocking fabric

this is really only feasible in my situation because i’m in a car with someone supportive but should i become able to leave the house again my plan is literally just to have a blanket over my head lmao

i hope some of this is helpful & that you’re able to get some relief as soon as possible 💓💓 you deserve comprehensive testing & care + access to the treatment options you want

[purpleyin]

Sometimes I feel so stupid about health stuff. Felt like that twice lately. It’s the ‘I did loads of research and am super prepared’ feeling clashing with an instance of ‘well actually there was this thing none of the research/professionals told me’.

Once was when I was filling in my medication booklet (one of my meds has an awfully designed booklet to keep notes on when you take a dose and what your recent bloodtests are for reference). I reread some of the intro spiel for the booklet where it said I’m actually meant to carry this damn booklet with me anytime I leave the house. I got told to always take it to any medical appointments but not that I should just generally carry it around with me. I’m usually so good at reading everything I get given - I read Patient Information Leaflets for any new medications and also reread them for all my other medications anytime I get a new medication in case the doctors didn’t remember some interaction. But apparently I’d not read all of this booklet, probably because I got told it was just for recording information in. Anyhow, I’ll be doing that in future seeing as I never got round to getting a medical alert bracelet because of cost. Although supposedly there’s a way to put that info on Android phones that is accessible to medics.

Second time was tonight when I went to post my spoonie moodboard on twitter and browsed the lupuslife tag. I’m UV sensitive, which is a pain in the arse let me tell you. I slather on sunscreen to go outside (also to go indoors if it’s certain types of lighting and barely anyone seems to know what lighting type they use so I assume the worst anytime I leave the house), I cover up, I got a parasol, many summer hats, a few wide brimmed ones for winter too. I couldn’t afford fancy UV blocking clothes or UV shielding laundry detergent (yeah, that is a thing, it washes in protective chemicals somehow) but I know the basic of if you can see the sunlight through the fabric then it’ll be letting UV through to your skin. Layers are my friend, though not fun in summer. I’m here limiting my UV exposure as much as is possible on my budget, or so I thought. I also kept having this issue over the last couple of years that going outside for more than a few hours - like going to hospital appointments across the city - would trigger a migraine later in the day. It was worse in the summer but did still happen at other times when I had a day out. I thought it was heat at first, then maybe dehydration or hunger if I didn’t eat/drink so much on the go, tried to avoid it, but none of those fit all the cases it happened. And then I see this person on twitter talking about wearing massive sunglasses to stop UV sensitivity triggering their migraines and I was like. oh. Oh! So yeah, that’s something to try next time leaving the house happens.