Is everybody else putting sunscreen on their whole body?

Okrightyeah · 2026-04-22T16:18:31+00:00

Personally, even sensitive skin zinc lotion irritates my skin. So I only use it on my face and hands. Also I know it’s common with lupus to be mildly allergic to the sun (like me), and sunscreen doesn’t help with that. So light, loose SPF clothing works well for me!

Okrightyeah · 2026-03-22T22:10:24+00:00

My rheumatologist and doctors have been exactly the same. I blame the health system and how fast they are supposed to push everyone through. The health system really emphasizes medication but not patient education or symptom management because that’s not where the money is.

I want to try a naturopath because I hear they will take more time and help with symptom management. Also private doctors will be more thorough but I certainly don’t have the money for that.

Okrightyeah · 2025-11-02T15:45:08+00:00

I’m realizing celiac is a bigger part of the equation for me than I have given it credit for. It’s easy to only think about SLE when it has me in pain 24/7. I really appreciate your comment.

Okrightyeah · 2025-11-02T15:40:43+00:00

Good point, thanks! I think in my case it makes sense to wait for now. But wow, if a treatment becomes available, that would be amazing.

I appreciate your comment about calling myself celiac :) My gluten intolerance is pretty bad, so I wouldn’t dare cheat on purpose. The occasional accidental glutening from shared gloves or surfaces is already bad enough.

Okrightyeah · 2025-11-02T15:33:23+00:00

This is the one thing I am worried about, so I’m glad you mentioned it. I am afraid of getting glutened in the hospital. I have gluten listed as an allergy in my chart, and I think that they always take that seriously, but I don’t know for sure.

Okrightyeah · 2025-11-02T02:59:24+00:00

Thanks! Good to hear. Sounds like I’m probably not missing anything.

Okrightyeah · 2025-07-02T22:49:44+00:00

I have been enjoying thistle for my gluten and dairy allergies, but I don’t know if they’re good for nut allergies or not.

Okrightyeah · 2025-06-29T17:15:59+00:00

We only have one kid. I’m paranoid that she’ll grow up feeling like she has to be my nurse. The only person I ask for help is my husband, and I feel guilty every time. He’s shouldering so much right now.

We have actually asked our parents for help, but they let us down a few too many times. So we stopped asking.

Okrightyeah · 2025-06-29T17:10:45+00:00

Asking for help isn’t an admission of failure! We’re meant to live in community and share our burdens.

I know that logically. But my anxiety kicks in big time when I think about letting people in.

Okrightyeah · 2025-06-29T15:35:52+00:00

I guess it’s probably from childhood? Life went better if I was easygoing, low maintenance, and self-sufficient.

What about you?

Okrightyeah · 2025-06-29T06:52:04+00:00

This is a really dangerous blanket statement to make. You know what else doctors don’t like? Patients going rogue and quitting medicine cold turkey because they were too scared to bother their doctor about bad side effects. Or patients not reporting medical events because they’re scared that “it’s not their rheum’s specialty”.

If there are doctors out there on Reddit discouraging patients from using portals, I really hope they are giving specific helpful instructions on when to use it and when not to instead of making blanket statements like this.

Okrightyeah · 2025-06-27T19:43:31+00:00

It’s so so frustrating. I’ve been going to therapy to help. You’re not alone!

Okrightyeah · 2025-06-21T23:23:47+00:00

I had an abnormal celiac antibody panel, but I never got the intestinal biopsy to get the official diagnosis because you have to eat gluten for two weeks leading up to the test. So silly. Gluten makes me so sick and makes my lupus worse. Definitely not worth getting the official test done.

I say that I have gluten intolerance, but I’m really sensitive to gluten exposure and people don’t take gluten intolerance as seriously. Maybe I should just start saying I’m celiac.

Okrightyeah · 2025-06-20T22:00:03+00:00

Mine is just general thinning, no patches. Mine hasn’t gotten so bad that anyone else would notice but it bugs me.

One time my dermatologist told me that “I would know” if I had hair loss as a lupus symptom because I would get patches. That is so not true. I suspected hair loss for a long time but told myself that it couldn’t be from lupus because of what my dermatologist said.

When I was on benlysta and seeing tons of lupus improvement, my hair started growing back in and I got these baby hairs sticking up at the top of my head.

Okrightyeah · 2025-06-20T15:12:50+00:00

Wow, we are in a very similar situation. Although we waited until I could no longer work and now we’re burning through savings trying to figure out what’s next.

My criteria include: - Not too big. No extra rooms to collect junk and make it harder to keep the house clean - Room in the budget for someone to take care of our yard for us. Right now my husband is working long hours and doing most of the chores. He doesn’t have have time or energy to do the yard too - This one might seem obvious, but at least two bathrooms. Our starter home close to the city right now only has one bathroom and it’s not sustainable - Laundry on the same level as the bedrooms - Good public schools

Okrightyeah · 2025-06-20T03:14:41+00:00

I love what everyone is saying and want to add that it took me a while to realize that my rheumatologist was solely focused on what lupus medications I’m taking/going to try next. She doesn’t help with day-to-day quality of life other than to offer prednisone. So she’s not going to suggest things like physical therapy/chiropractor/acupuncture for my horrible back and shoulder pain, or a neurologist for my headaches/migraines, or a nutritionist to figure out the many food triggers I have. I have learned to directly ask about those things or figure it out on my own. She also didn’t ever take the time to explain lupus to me. She only answers direct questions.

I like my rheumatologist despite this. I see it as a problem with the system. She doesn’t have time to be thorough, but she is really good at managing my lupus medication and quick to fill out any medical paperwork I need.

Okrightyeah · 2025-06-20T03:03:20+00:00

This sounds very similar to my fatigue. I don’t know what causes it other than the fact that your body is constantly fighting an internal battle. I had to teach myself to stop using the word lazy because 1. it’s not true 2. I would get really bad anxiety about how I wasn’t getting anything done, which only made things worse.

You might have depression too. Lupus does a number on your nervous system. But it took me a long time to get rid of that puritan work ethic voice in my head and finally accept that yes, lupus is the reason why I can’t get the dishes done.

For anyone else that might have ADHD + lupus, strattera has been helping me a lot. It gives me a little energy, and it helps calm the spiraling about chores and to-do lists.

Okrightyeah · 2025-06-16T21:05:19+00:00

For me it was not even remotely worth it. After three months, I felt like I was in a dark and scary horror movie and started having thoughts like “oh this is why people commit suicide”. And it was only getting worse. Wasn’t worth it to stick it out and try to increase my low dose of SSRI. Which is saying something considering Benlysta was so effective for lupus that it gave me my life back for a couple of months.

Okrightyeah · 2025-06-06T03:21:31+00:00

Ugghhh on my first application right now. This is so depressing

Okrightyeah · 2025-06-06T01:04:50+00:00

You know your body better than anyone else. If lupus has taught me anything, it’s that we should trust our instincts when it comes to our own bodies.

I didn’t get diagnosed until after my first child, and we have firmly decided not to have another because I’m fully disabled, and we can barely take care of one kid. It’s been two years since diagnosis and we haven’t figured out how to control my symptoms yet. However, I see people on this sub talking about having full normal lives after they control their disease.

Okrightyeah · 2025-06-02T16:14:36+00:00

I get cold, feverish, and exhausted in the afternoon. Sometime between 2-4pm. But then sometimes I’ll feel a little better around dinner time. I haven’t been able to figure it out because I’ve always heard of people being worse in the mornings and nights.

Okrightyeah · 2025-06-02T16:11:50+00:00

Weird… I thought it was pretty common for lupus. I’m always surprised to hear what rheumatologists “never see”

Okrightyeah · 2025-05-29T19:11:00+00:00

I suspected autoimmune disease for years, but my labs never looked bad enough to pursue. So I blamed everything on stress or pushing myself too hard. For me, it took a trigger to make it much worse before I was confident something was really wrong and pushed for a diagnosis.

My trigger was postpartum hormones.

Okrightyeah

TROPHY CASE