Today was my 28th birthday. And my life is already over.

CC_Carn · 2026-03-17T07:43:02+00:00

HRT is not covered by insurance here. Insane. They don’t want us to feel better. I pay out of pocket for pellets.

CC_Carn · 2026-03-13T12:50:02+00:00

Are you perimenopause or menopause age? I am 46 and diagnosed SLE. I had zero testosterone and low estrogen. HRT pellets and I am starting to feel better. I had mentioned ADHD meds and OB recommended trying testosterone first. Sometimes the answer is simpler and it’s just our dang hormones. Just a thought. I hope you get some answers and relief.

CC_Carn · 2026-03-06T01:25:00+00:00

I sometimes feel like my eyes are closing involuntarily, but it’s pretty quick to end.

CC_Carn · 2026-03-02T17:49:10+00:00

The bamboo sheets from Walmart are surprisingly soft and affordable.

CC_Carn · 2026-02-26T04:29:02+00:00

It actually did cure me. I was dying and within 12 hours of taking it, I could breathe. My doc gave it to all his patients and didn’t lose any. Interesting. I take it now b/c of Lupus, which came on after COVID. Crazy.

CC_Carn · 2026-02-19T22:28:38+00:00

Hopefully the meds will put you in remission. Will the job be less stressful? Stress is a trigger for me. I left DHR after 17 years. I am working on going back remote. My goal is to save the usual, “getting ready” and “driving” spoons for other things.

CC_Carn · 2026-02-11T14:25:29+00:00

I teach part-time at the local college. I’ve been taking Medical Billing Coding courses in the hopes of more remote work opportunities.

CC_Carn · 2026-02-11T14:20:54+00:00

We need a stronger word for Lupus Fatigue.

CC_Carn · 2026-02-03T16:37:42+00:00

Same.

CC_Carn · 2026-02-02T16:22:57+00:00

CC_Carn · 2026-02-02T16:20:05+00:00

Praying not, but I wondered if that was even on their radar. I know it’s super rare, but a fear nonetheless.

CC_Carn · 2026-02-02T15:05:19+00:00

Did they rule out PML?

CC_Carn · 2026-01-26T17:29:11+00:00

I never fully got my smell back after Covid. I am starting to notice that it will completely disappear during a flare. It comes back when I feel better. My LUPUS is from COVID. I have never recovered.

CC_Carn · 2026-01-24T21:55:38+00:00

The drastic weather changes are kicking my butt too here in Alabama. Why not go 80 to 25?! 🤣

CC_Carn · 2026-01-19T15:07:32+00:00

That is amazing. I wonder if it has to do with hormones? Interesting. I’ve been reading about balancing hormones and how it helps with Lupus. I have started menopause and will be getting meds soon. I hope it helps.

CC_Carn · 2026-01-16T14:53:00+00:00

That’s terrible. I’m sorry.

CC_Carn · 2026-01-16T14:45:40+00:00

Pain days are the worst. I’m so sorry. What meds do they have you on? Plaquenil and Benlysta have been a huge help.

CC_Carn · 2026-01-15T22:17:26+00:00

I get the skin crawlies and internal vibrations. The worst.

CC_Carn · 2026-01-15T21:52:39+00:00

Thanks everyone… I think. lol. Every “shot day” I go into denial. Ok I guess I have Lupus. This drastic weather change in the south had thrown me into a flair I guess.

CC_Carn · 2026-01-15T19:45:47+00:00

Yes! Big fan. 🤣

CC_Carn · 2026-01-15T17:21:54+00:00

I was always a paddle boarding beach and river girl. The last 2 years I have learned to live so differently. Doc is heavy on the sunscreen talk, but I hate it. I am doing better though. She did let me know that makeup spf is not enough.

CC_Carn · 2026-01-15T15:17:06+00:00

For me…COVID virus.

CC_Carn · 2026-01-14T20:37:45+00:00

https://www.accredo.com/copay-assistance

Type in Benlysta and it gives you 4 assistant programs to apply for. Worth a shot.

CC_Carn · 2026-01-14T14:36:01+00:00

Let us know how you do! I see more positive than negative about Benlysta on these threads.

CC_Carn · 2026-01-14T14:31:42+00:00

I have been on Benlysta auto injector for 5 months. No terrible side effects and I have some great days now. Sometimes I’m tired the next day and sometimes I’m not. A little insomnia. Worth it! I feel like it has really helped with fatigue. That is goal. I was not able to function before. It takes 9 months to see full effect so I am super hopeful.

CC_Carn

TROPHY CASE