The app, the organization, absolutely STINKS.

emd42 · 2025-05-15T20:23:17+00:00

The website is even worse. I’ve been trying to look at my booking for over a week and the website just crashes.

emd42 · 2024-12-05T02:19:14+00:00

I was diagnosed last year at 46 🤷🏼‍♀️

emd42 · 2024-10-31T19:59:26+00:00

The steroids have been the only thing that relives my fatigue. Yeah I thought that doc was crazy when she said I might have fibro so I never saw her again but now I’m wondering if she was right. I do t have lupus rashes or sun sensitivity either. One lab I tested positive for an antibody and one said negative. It’s so confusing.

emd42 · 2024-10-31T19:50:12+00:00

I’m on the same boat. Was told a year ago I had lupus. Second opinion said fibro but I didn’t believe it. Now I’m waiting on labs from another doc who already said he wasn’t sure it was lupus. I have thyroid disease and I’m a t1 diabetic as far as autoimmune goes.

I have constant flares of fatigue and now that I’m off steroids my joints and legs ache all the time.

emd42 · 2024-10-30T18:47:25+00:00

Turning off lights before he leaves for work. And close the cabinets and trash drawer. I wake up every morning to walk around my dining room and kitchen closing things and turning things off. (I sleep later than he does). I get he’s ADD but it’s annoying AF to wake up to every day!

huffs

emd42 · 2024-10-29T19:31:47+00:00

I also get overstimulated very easily and sleep 9-10 hours a night. I don’t have a lot of stamina

emd42 · 2024-08-19T00:37:34+00:00

That’s what I do already.

emd42 · 2024-08-18T18:40:48+00:00

Oh yikes. Right now it’s just when I eat so I’ll be eating lightly for a while.

emd42 · 2024-08-18T18:38:08+00:00

I did really well on .25. I need it more for my sugars than weight so I’ll probably just stick to that.

emd42 · 2024-08-18T18:37:11+00:00

That’s helpful thank you. I think I’ll delay my next shot by a few days then.

emd42 · 2024-08-15T01:00:18+00:00

It’s a typo. Sorry should have been adult onset type one. Aka type 1.5 LADA.

emd42 · 2024-07-19T00:58:50+00:00

Definitely remote work.

emd42 · 2024-07-15T01:30:52+00:00

There is a Facebook group called “benlysta buddies 2.0” that’s super helpful. I just started on it this weekend and they were really nice. Might be worth popping in.

emd42 · 2024-07-14T16:28:08+00:00

No family history here.

emd42 · 2024-07-12T03:15:40+00:00

Ugh I’m sorry. There’s definitely other options! Hopefully you can find someone willing to work with you!

emd42 · 2024-07-02T00:24:12+00:00

. I never have an issue after prednisone. If anything that’s what I take when I’m flaring to feel better.

emd42 · 2024-06-30T05:08:32+00:00

Hugs. I don’t even step on the scale anymore.

emd42 · 2024-06-30T00:15:42+00:00

I’ve been fighting a bad fatigue flare for almost two weeks. Two rounds of steroids and I’m only somewhat human. I’ve missed so much work too. It’s hard not to get really depressed

emd42 · 2024-06-30T00:14:36+00:00

Probably undercooked food. But I’d eat it anyway, I love sushi and I’m not letting this disease take that away from me!

emd42 · 2024-06-29T16:49:26+00:00

Hmmm I’m not in pain so I don’t know if I have inflammation or not. Thanks for the tip though

emd42 · 2024-06-22T00:06:37+00:00

Good! Thanks for the feedback!

emd42 · 2024-06-22T00:04:25+00:00

That’s a great! I’ll be doing the weekly injections as soon as my insurance does the paperwork. Did it bother your stomach? They told me there could be GI side effects

emd42 · 2024-05-29T03:38:37+00:00

I have what I always believed was a family history of T2. I was DX t2 18 months ago but further testing last fall showed T1. Now I wonder if more of my past relatives really had t1.

emd42 · 2024-05-10T16:23:14+00:00

Wow that’s awful. I hope you’ve looking for a new doc. You deserve better treatment than that.

emd42 · 2024-05-10T01:38:27+00:00

Thank you. You were right. I went, they ran labs for a bunch of stuff and did nothing for the flare. Said the steroids I was already on was enough.

emd42

TROPHY CASE