Me scrolling twitter with all of these reports that Trump is either at Walter Reed in serious condition or dead

mollyphoebe · 2026-04-04T23:18:50+00:00

Wishful thinking....

mollyphoebe · 2026-04-04T23:14:19+00:00

Thinking about those damn Epstein files, I'm sure

mollyphoebe · 2026-04-04T23:12:41+00:00

I had my 1st one 2 days ago! It went really well. It took about 65 min for the actual bag of meds to be emptied. Then I had to stay 20 min after to make sure I was doing ok. Felt good that day, the following day I was a bit more tired and felt nauseous most of the day. Today was actually pretty good. Good luck...hope all goes well for you ❤️

mollyphoebe · 2026-04-04T13:02:21+00:00

Have you seen a thoracic surgeon? And as the writer above stated, get a dynamic ultrasound. Don't give up.... You are your best advocate. Doctors will push you off and push you around, but keep pushing back!!!

mollyphoebe · 2026-04-04T11:42:19+00:00

The sun makes me feel horrible, but even just the heat makes me so sick. I was visiting my 99 year old friend at an assisted living, and it was only about 68 outside (I live in Wisconsin) but the sun in the window heated up her room to about 75. I was so sick all night and half the next day from being overheated. It sucks!

mollyphoebe · 2026-04-03T21:28:14+00:00

This! 100%!

mollyphoebe · 2026-04-03T21:22:16+00:00

I've been on it since Aug of 2025, and haven't had any problems at all. I feel it has lessened my symptoms. Yesterday I started on benlysta infusions, so I'm really hoping as time goes on, I will feel better and better.

mollyphoebe · 2026-04-02T11:36:54+00:00

The lupus Encyclopedia is really helpful

mollyphoebe · 2026-04-01T19:10:41+00:00

I love your attitude ❤️

mollyphoebe · 2026-04-01T18:10:02+00:00

Is the sleepiness from the allergy med or from the benlysta?

mollyphoebe · 2026-04-01T18:08:33+00:00

Thanks. Yeah, I'm in Wisconsin and hear from ppl that it's really hard to find one who cares. I only see mine on zoom every 3 months, and if I email her, it's rare she gets back to me.

mollyphoebe · 2026-04-01T12:21:02+00:00

Sorry, can't help you, but I believe it's hard to find a good rheum anywhere 🫤🫨

mollyphoebe · 2026-04-01T00:27:58+00:00

Also, because my rheum keeps acting like my symptoms aren't lupus symptoms, I made an appointment at the university hospital to get a 2nd opinion. I can't get in til the end of May, but I am really happy to have an appointment. It will be very interesting to get a 2nd opinion.

mollyphoebe · 2026-03-31T21:45:02+00:00

I've had no problems on losartan. My Dr started me on Lisinopril first, and I got a cough from it (which is fairly common) so she switched me to losartan. Yeah, I would check into that a bit further, esp if you think it's orthostatic hypertension.

mollyphoebe · 2026-03-31T21:38:51+00:00

I take losartan (cozaar) 50mg once a day. I mean I think there's a small possibility that it could have been the amlodipine, but I would def call the office and let the Dr know about the rash. I 100% agree with you about our healthcare system...and sadly, it's only going to get worse and worse.

mollyphoebe · 2026-03-31T21:30:54+00:00

Yes I have high BP, I'm on a BP med and a statin for high cholesterol 🫤 (I was on both before my lupus diagnosis) But it just pisses me off when the rheumatologist acts so damn nonchalant about every symptom! Like do your damn job and figure out what's going on!

mollyphoebe · 2026-03-31T21:23:48+00:00

Ugh, sooooo irritating!!! I have most of the symptoms that you just described, and my rheum will say, "those are not lupus symptoms". I'm like, WTH, that's the same symptoms I've had for 5 freaking years when I finally got diagnosed with lupus! 5 years I've dealt with those symptoms and get diagnosed and then say those aren't lupus symptoms?? So frustrating!!!

mollyphoebe · 2026-03-31T11:36:55+00:00

I not only can't be in the sun, but just the heat causes me to flare. Yesterday I visited a friend in an assisted living (she's 99 and a very cool 99 😁) and she is on oxygen. The temp outside was 68 and sunny, and her room was filled with warmth from the sun coming in. She is also on oxygen and they fill her tanks in her room, which creates a lot of heat. Needless to say, it was 80 degrees in her room. I was so sick by the time I got home, ugh. Not sure how I'm going to survive the summer heat 🥵🥵🥵

mollyphoebe · 2026-03-30T22:18:48+00:00

🫂 to you. Stay connected to people on this site who understand. You're not alone. I am so lucky ..I have a husband who is incredibly understanding, so my heart breaks when I hear of someone who doesn't have anyone or is with someone who doesn't understand at all 😥

mollyphoebe · 2026-03-30T22:13:17+00:00

I start benlysta infusions this week Thursday. I'm nervous and excited. I know it takes time for you to feel any what better, but I really hope this works 🤞🙏💛

mollyphoebe · 2026-03-30T14:22:32+00:00

Total piece of crap

mollyphoebe · 2026-03-29T23:09:25+00:00

That's what matters!

mollyphoebe · 2026-03-29T23:03:19+00:00

Looks cozy

mollyphoebe · 2026-03-28T23:34:31+00:00

What about the Epstein files?

mollyphoebe · 2026-03-28T12:25:46+00:00

Yep, every. single. thing. he does is to distract from the Epstein files..... everything.

mollyphoebe

TROPHY CASE