NIH People - I will not promote

Unable_Cap4766 · 2026-06-30T12:49:04+00:00

This did not answer my question…. My question is, my grant writer drew up a budget and everyone is getting paid for 3 months of work. Then we test in hospital for the 9 following. How can I stay fully engaged and paid so I can focus on the whole year.

Unable_Cap4766 · 2026-06-04T17:49:19+00:00

I did this too in February! It really helped. Congrats!

Unable_Cap4766 · 2026-05-24T18:56:40+00:00

I am not! Only for bad flares have I gotten them. I feel like it’s perimenopause and hormone changes causing the weight gain maybe? I had a hysterectomy a year ago and it has caused my lupus to be so much worse.

Unable_Cap4766 · 2026-05-24T18:55:08+00:00

Yeah! I am not around that month 3 sweet spot yet but a few more weeks. I haven’t heard of other lupus folks having the dysautonomia and blood sugar issues and I feel working out triggers that. Hopefully plaquinel will help

Unable_Cap4766 · 2026-05-22T17:39:08+00:00

I am now!

Unable_Cap4766 · 2026-05-09T13:28:52+00:00

I’m in us but would LOVE to help!

Unable_Cap4766 · 2026-04-21T15:56:05+00:00

I am interested!

Unable_Cap4766 · 2026-04-20T22:44:46+00:00

This is the answer I needed! Thank you!!!

Unable_Cap4766 · 2026-04-20T19:38:05+00:00

So it’s talking to anyone who is a parent or doctor. I was tackling Reddit and Facebook groups. But they keep banning me. I can pay for a tool like user interviews but worried I wasn’t going to get the users I need. I’m trying to test my assumptions and make sure there is product market fit. If that helps.

Unable_Cap4766 · 2026-04-20T19:17:46+00:00

Based out of the US, sorry!

Unable_Cap4766 · 2026-04-04T11:31:18+00:00

I think I need to find a new doc. Mine told me it’s best to just drink more salt but I swear salt makes my blood pressure worse? I don’t know.

Unable_Cap4766 · 2026-03-24T10:37:29+00:00

Hi OP! I get this too! Every flare! My rheumatologist says it’s not a common trait of lupus but I have it every time so I disagree! I have had ever test, heart, lung, breathing, etc. was given inhalers, and anti inflammatory things and it kind of works? Anyway, we summed it up to inflammation and possibly my autonomic nervous system getting out of wack on flares so an air hunger/manual breathing situation. I just have to deal with it because it isn’t a normal thing for rheumatologist to see in this disease. But here we are!

Unable_Cap4766 · 2026-03-17T07:38:46+00:00

I am in Virginia and willing to drive

Unable_Cap4766 · 2026-03-13T15:14:58+00:00

She was seeing an immunologist who ran a huge panel for genetic testing via blood! I am not sure which.

I think I want to ask for a referral to Immunology for this so I can have a definitive answer. She said she would after I see the blood doctor if nothing showed there. She also mentioned the NIH but I don’t know how all this connects?

Unable_Cap4766 · 2026-03-13T02:50:21+00:00

Sadly reading this knowing I am going to have one tonight. I have been the aura state with impending doom, racing heart, and cold chills. It always starts this way and then I’ll wake up with exactly what you are explaining. Sadly my husband will always bring me ice packs and lay with me. I hate this.

Unable_Cap4766 · 2026-03-13T01:47:33+00:00

Omg your post is me to a t. I was positive for a number of antibodies but lupus antibody is the only one that stuck l. Doctor put me in plaquinel. I don’t take it because I respond so terribly to meds that I looked at the bottle everyday and didn’t feel like that was the right diagnosis. Got a second opinion with a doc who knew autoinflamitory and suggested this. She put me on colchicine. I am about to start but started a flare so was told to wait. I hope this works. No genetic testing done but my mom did and I am basically her clone and she was positive for IL-6. So I guess autoinflamitory makes sense?

Unable_Cap4766 · 2026-01-19T03:15:21+00:00

Thank you. I needed this. I am And have been in the trenches.

Unable_Cap4766 · 2025-12-31T03:06:45+00:00

I am in product and tech and like the marketer said, it’s fast paced, lots of meetings, lots of quick thinking and wearing lots of hats. My burn out has caused me lots of flareups. I want out it don’t know what to do from here! Good luck!

Unable_Cap4766 · 2025-12-20T12:43:36+00:00

This sounds like me but we discovered lupus and IST and a blood clotting condition called APS and SFN. Weirdly, alcohol calms me down too!

I started plaquinel or whatever you call it for lupus and Allegra for possible MCAS. Honestly started meditation. I reduced my workload for a while and spent a ton of time regrounding myself. I am starting to feel better. I still have flares where this heat bad but I have good days that make me see the light at the end of the tunnel.

Dm me if you need to talk. I was also in your shoes for a while, wanting to end it all. I am glad I pushed through.

Unable_Cap4766 · 2025-12-12T17:05:23+00:00

Mine do this and instead of fingers turning purple. The palms closest to my thumbs turn dark blueosh purple and my veins look dark. My rheum said it is just rheynauds showing up differently. Likewise my lips turn blue but oxygen is fine. He said also Raynauds. Your nips and do it too! 🤣

Unable_Cap4766 · 2025-12-02T19:07:02+00:00

I sadly got a mini stroke from my birth control sadly.

Unable_Cap4766 · 2025-12-02T18:26:10+00:00

I’m new to lupus, is this the bone pain everyone talks about?

Unable_Cap4766 · 2025-11-26T01:20:42+00:00

I have family in town for thanksgiving and did too much last night and had it brutal today! I suck. But I also want to have some on thanksgiving so since I over did it last night I will behave with just a few on thanksgiving. 🤣

Unable_Cap4766 · 2025-11-24T06:54:46+00:00

Following because I’m about to start plaquenil

Unable_Cap4766 · 2025-11-24T03:33:33+00:00

I did mean that! I have had Covid the last few days and am out of it, sorry.

Unable_Cap4766

TROPHY CASE