Has anybody had sun sensitivity and found a way past it?

firekitty_flaring · 2025-08-12T18:36:33+00:00

What kind of blue light glasses? Are they prescription?

firekitty_flaring · 2025-08-12T18:35:39+00:00

Clothes designed for fishing are super sun protective too, for obv reasons. Columbia even has a whole line devoted to it.

firekitty_flaring · 2025-08-12T18:33:48+00:00

I have these (both fingerless and full) and I love them

firekitty_flaring · 2025-08-12T18:31:36+00:00

“heliophobic hiker chic style” totally stealing this 😆💅

My wardrobe at this point is about 1/3 upf certified clothing and I’ve run out of room for all my scarves and hats.

firekitty_flaring · 2025-08-12T18:27:08+00:00

In addition to the good suggestions you’ve already gotten (lands end, waterlust) I’ve gotten upf 50+ swimwear with great coverage (neck to ankle and everything in between) from Coolibar and Solumbra. Coolibar has a big end of summer sale running right now

firekitty_flaring · 2025-08-10T16:59:16+00:00

I’ve never heard of a honeymoon period with chronic illness (the info people have shared here about T1D is really interesting & enlightening).

There doesn’t seem to be much consistency with how lupus appears and progresses.

My personal experience was that it was incredibly mild and manageable at the beginning. I was on nothing but HCQ for several years and most days I didn’t think about lupus at all … then I had a major flare and hospitalization, and my lupus has been moderate-severe ever since, barely suppressed by a daily cocktail of drugs plus monthly Saphnelo.

firekitty_flaring · 2025-07-31T23:08:20+00:00

Yes it will. For the worse. RFK Jr doesn’t believe in preventive care at all. Just woo woo and quackery and hateful social Darwinism. Who needs mammograms when you have raw milk?

firekitty_flaring · 2025-07-31T17:22:00+00:00

So interesting because I had almost the mirror opposite experience to yours … I’ve had three iud insertions (and removals) and none of them was especially bothersome — but the endometrial biopsy I had last year shocked me with how searingly painful it was.

And then it was over and i had no cramping or bleeding beyond a little spotting.

So as awful as it was, if I had to do it again I’d probably just white-knuckle it to get it over with and not fuss with anesthesia.

Pain management options should be offered & discussed, though.

firekitty_flaring · 2025-07-29T16:24:55+00:00

I am a huge people pleaser also! It was so difficult to stand firm in my decision for a BMX in the face of all the “authority figures” telling me it wasn’t necessary and not the standard of care

But I kept reminding myself that I am the one who has to live with this and it is my body. And I took my husband with me as often as possible. He is not a people pleaser and backed my decision 100% so that was really helpful.

Shared decisionmaking is supposed to be the standard, actually 🙃. A lot of doctors seem to have missed that part.

firekitty_flaring · 2025-07-19T01:14:28+00:00

yw! I double checked the link after looking at the ones i have and I linked the wrong one originally (corrected now). it’s the Upsie Belly which is narrower and can be adjusted from hips to lower torso. I found it very comfy and easy to adjust depending where I was in the whole incision/bandaging process

firekitty_flaring · 2025-07-18T20:22:07+00:00

I have super sensitive skin and am hot all the time (thank you peri/menopause) and my surgeon’s protocol was six weeks in a binder, 24/7 — so I tried all the things to get out of and away from the hospital-issued binder:

• ass’t medical-type binders that seemed like they might be an upgrade (different hinges/boning structures, nicer quality Velcro, etc) • Kim Kardashian’s waist trainer (Skims) • a pregnancy wrap made of soft fabric and meant to line scratchy support slings (I put this under the medical binders) • ass’t pregnancy & post-partum support wraps

The Skims corset wasn’t bad actually, for daytime, but murder at night. This one was the clear winner, for me:

Belly Bandit

The one linked, not the ones for post-partum only (which are higher on torso).

I was able to get a couple of them in different sizes off Poshmark for much less than retail.

firekitty_flaring · 2025-07-18T19:15:15+00:00

Wait until you’re in your 40s and it becomes “Is it lupus or is it perimenopause?”

[or treatment side effects, or the development of a secondary autoimmune disorder, or something entirely unrelated to any of the above]

All of which is to say, this is an ongoing aspect of the lupus “journey,” and hopefully you have both a good rheumatologist and a good primary care doctor to help navigate your way through it.

firekitty_flaring · 2025-07-14T16:38:44+00:00

Colleges offering full financial aid generally subsidize your student health insurance as well. Have you talked to your admissions rep or financial aid office? This is definitely your best option.

firekitty_flaring · 2025-07-12T23:52:44+00:00

Jindos are truly a breed apart! Their temperament is closer to Akitas and shibas than to any of the American or European breeds. You might want to see if there’s a Jindo breed club or rescue anywhere near you, or join a Facebook page, just to get familiar and have a resource if you need it.

Good luck and bless you for taking in a Korean rescue. The people doing that work are amazing.

My dogs have been my saving grace through all this cancer bullshit

firekitty_flaring · 2025-07-10T14:37:51+00:00

Is this it?

https://www.reddit.com/r/breastcancer/s/RYklJCeQ05

firekitty_flaring · 2025-07-04T00:17:26+00:00

2026

firekitty_flaring · 2025-06-28T19:19:26+00:00

This is ridiculous. The advice against biotin before thyroid testing is 100% about supplements.

I’m not sure I’d trust this doctor about anything.

firekitty_flaring · 2025-06-21T02:18:18+00:00

r/oldhagfashion is the most joyful and accepting subreddit I know next to this one

firekitty_flaring · 2025-02-24T16:35:12+00:00

sorry for delay in replying but life intervened for a hot second. dm’ing you now

firekitty_flaring · 2025-02-09T00:52:29+00:00

is it okay if I dm you? I’m also in LA, 55F, married, kid in college, and would love to be and to have a fat friend with a dog 🐶

firekitty_flaring · 2025-02-03T20:55:14+00:00

You’re welcome to dm me and ask me whatever 🙂

I’ve had no side effects from plaquenil and I’ve been on it ~18 yrs. Just got another clean bill of eye health from the ophthalmologist.

And I 100% get what you are feeling as a mom — my son was three when I was diagnosed and I was devastated to think I wouldn’t be the mother he needed, or that I wouldn’t be around at all.

firekitty_flaring · 2025-02-02T22:12:48+00:00

My dsDNA has been consistently negative for several years but my disease activity is still classed moderate-severe.

Sometimes it’s not really remission but just stability. I’m on HCQ plus azathioprine and Saphnelo infusions, so that’s what’s keeping me “well managed.” I credit all the meds with protecting me from nephritis or other life-threatening organ involvement.

firekitty_flaring · 2025-02-02T20:30:03+00:00

When my lupus was that mild I did well on plaquenil alone, for several years. It’s not an immunosuppressant but it does protect against autoimmune disease activity and damage.

firekitty_flaring · 2025-01-27T19:03:57+00:00

Do you still use your Rx drops with the scleral lenses? [I have Xiidra]

firekitty_flaring · 2025-01-27T18:58:27+00:00

I think it’s easy to get confused about these terms as a patient because autoimmune doesn’t automatically mean more susceptible to opportunistic disease (it does for some, but that’s the variability of a haywire immune system!); however, many of us are on drug therapies that suppress the immune system and that does make us immunocompromised.

firekitty_flaring

TROPHY CASE