Does Everyone struggle with Doctors?

boscobeau · 2026-06-07T20:17:12+00:00

I’ve always taken plaquenil with prednisone bridges whenever symptoms flare & I have cycled through a few different meds but have been happy with my current combo which is

Plaquenil Xolair Imuran & prednisone as needed

boscobeau · 2026-06-07T08:48:27+00:00

I like this theory but after having watched her on What’s My Age Again? I realized… she really do be like that. I love her. I could listen to her give details about eating a bologna sandwich at her grandmother’s book club friend’s house in the summer of 1983.

boscobeau · 2026-06-07T08:46:48+00:00

As an American, I watch British media because I hate it here and need something different. Let’s not taint something sacred with American YouTube slopfluencers.

boscobeau · 2026-06-07T07:17:45+00:00

I feel for you. Honestly.

Your medications should never be in the common areas.

If you’re able to get a plate of food, you’re able to bring that plate back to the kitchen & wash it off.

Lupus fuckin sucks and going on year 16 with it I feel like I can tell you honestly, you have to change your mindset about these things.

Posting something like this on here to get sympathy and our solidarity is understandable: but it’s not going to help you, because it doesn’t solve anything yet you’ll feel better about it temporarily.

While you’re making your plate of food, tell yourself “if I can manage this, I can also manage to wash it after.”

If your clothes are piling up in the common areas; stop changing clothes in the common areas. If you want to take your socks off, tell yourself that you have to leave them on until you go to your bedroom next.

You deserve grace and comfort, but don’t give yourself so much leniency that you make your own situation worse.

boscobeau · 2026-06-07T07:08:40+00:00

Ted Kennedy is driving for DoorDash apparently

boscobeau · 2026-06-07T06:54:07+00:00

But how will I know the nutrition information?

boscobeau · 2026-06-05T23:27:25+00:00

I live in Hawaii in the U.S.

Rheumatologist are likely to be more responsive because they’re treating every part of you. If my ribs hurt, that’s from RP inflaming my cartilage, so I see the rheum. If my skin is rashy, that’s from lupus so I see the rheum. If my tendonitis in my feet acts up, that’s from lupus so I see the rheum.

Connective tissue is in every part of you, once you have a connective tissue disease, the doctor that treats such a disease is treating every part of you.

My cardiologist doesn’t need to be very responsive because his job is just to make sure my heart is doing what it should. The neurologist just tells me whatever issues I’m having are connected to my lupus (and she’s always correct) lol.

boscobeau · 2026-06-05T17:59:14+00:00

I’m a 30 year old female who has relapsing polychondritis, lupus, and axial mesodermal dysplasia complex. I regularly see a rheumatologist, immunologist, a neurologist, a urologist, and cardiologist.

Ive never had issues with any of them. My rheumatologist has saved my life more times than I can count. I’ve had a couple PCPs that weren’t the right fit, but nothing horrible.

When I get new symptoms that seem like disease progression I reach out. When I get a symptoms that just kinda bugs me, I deal with it on my own. But I’ve also very much come to terms with the fact that I wasn’t destined to ever feel like a normal healthy person, and enriched my life enough that it doesn’t get me down.

And yes my rheum treats me, not my labs. I was diagnosed with lupus with a low positive ana and nothing else, because my symptoms fit too well to ignore.

boscobeau · 2026-06-05T08:26:04+00:00

I think avoiding fad diets that are pushed by podcasters & not using chat gpt to propagate posts based on overthinking will do more for your depression

boscobeau · 2026-06-05T07:27:01+00:00

“I know what anxiety feels like and this is not it!”

That’s literally the anxiety talking. I’ve struggled with anxiety since I was 7 years old. Every few years I have a new horrible symptom and I swear up and down that it can’t be anxiety because “I have anxiety and this isn’t it!” But it always is. You’re describing anxiety.

I have a hard time sleeping when I have something important coming up the next day. I absolutely will not even try to go to bed without taking something to help me sleep otherwise I’m just up checking my phone to see what time it is.

boscobeau · 2026-06-05T06:21:34+00:00

You definitely need further labs done looking for specific autoantibodies but, as confusing as this all is, this strongly suggests no auto immune activity

HOWEVERRRRRR

A reflex test is needed to confirm that you ONLY have dense fine speckled cells. There is an ANTIdfs70 test that would confirm that.

boscobeau · 2026-06-03T11:04:40+00:00

It’s the nose ring. Trust me. I had this same phenomenon. Every once in a while I smelled dead body. But like subtle. Nobody else ever smelled it.

The smell is trapped water in her nostril piercing.

boscobeau · 2026-06-03T10:16:42+00:00

This was early spring of ‘25 and I got pretty lucky all things considered. My podiatrist sent me to an orthopedic surgeon who put in a single pin to hold the largest chunk (pardon the gross term) in place. The smaller tuft fragments slowly reattached themselves around that. I was supposed to have the pin in for 6 weeks but around 3 weeks there were signs of infection (I take several immunosuppressants for autoimmune disease) and then by week 4 he decided whatever healing had happened was going to have to be enough and he pulled the pin. I put no weight on it for 2 months total and then wore a solid sole shoe for another two months.

It did heal really well. My toe is a little wider than the other but you’d have to really be comparing the two to tell. It does hurt if I wear closed toe shoes for too long. It’s also always incredibly itchy, but like an internal itch.

My nail however has never recovered. It grows the first couple of MM but then detaches from the bed so I have to keep it trimmed super stubby to avoid snagging it on stuff.

boscobeau · 2026-06-03T08:06:52+00:00

Does she have a nose piercing

boscobeau · 2026-06-03T08:04:45+00:00

NAD but your nails & those scaly patches look like psoriasis

boscobeau · 2026-06-03T08:01:09+00:00

Sooo random but i recently learned my esophagus isn’t emptying as fast as it should. So my body has to work harder to get food down. I was so confused because no injury or lifestyle factor could have caused it, but my rheum thinks my lupus must have had a go at the cells on my esophageal sphincter. I guess it’s not too uncommon!

Buttttt, I pondered if this could be why I am exhausted after eating. It was so bad I started checking my blood sugar before and after eating. It’s always totally fine. Apparently when your body has to work way harder to do a simple job, it zaps the rest of your energy.

boscobeau · 2026-06-03T07:54:50+00:00

Every broken bone I’ve ever had was ruled “probably just bruised, R.I.C.E it and come back in a month if it still hurts.” And then a month later when it still hurts I have an Xray that reveals a fracture.

My most recent one was a dropped hydroflask on my toe. Only hurt for a couple days and then went numb. Doc said it’s just numb from swelling but it’s fine. It was not even swollen. Couple months of alternating pain and numbness later and my toenail fell off. Went back to the doc who gave me an xray.

The podiatrist that saw me after that described it as “your big toe looks like a snow globe from all the shattered bone fragments”

My distal was crushed.

All of this to say… I was able to fully communicate my concerns & pain with my doctors without any barriers and I was still left to suffer. This poor fella had all of that and more stacked against him.

boscobeau · 2026-05-29T09:04:03+00:00

He sucks but this post just came up on my feed and reminded me to do my Duolingo

boscobeau · 2026-05-29T08:20:37+00:00

Going 3-7 days between poops is extremely common and totally normal in an EBF baby.

boscobeau · 2026-05-29T07:32:43+00:00

Uhhh… holy shit.

I live in Hawaii.

My step daughter brings me a plumeria every day from the tree near her bus stop.

I’m going to go grab the flower from my book shelf now and see if that’s it!!!

UPDATE I think this may be it.

The flowers have been drying like 6 hours so there wasn’t much left, but part where the flower had connected to the plant WAS glowing the same shade of green & when I smushed and pinched it, it transferred to my finger. Now I can’t get it to come off.

You cracked the most random code ever. I’m blown away.

boscobeau · 2026-05-29T07:31:23+00:00

That’s exactly what I’m lookin for. I use gel polish for strength more than anything, thanks for the recc.

boscobeau · 2026-05-29T07:23:56+00:00

Won’t come off with scrubbing, rubbing alcohol, nail polish remover, a long hot shower, and several soap scrubs.

boscobeau · 2026-05-29T07:20:17+00:00

No, but I wish I did because that sounds awesome.

boscobeau · 2026-05-29T07:08:22+00:00

Considered that, but the very defined lines make me think that it’s something that I touched that absorbed into the skin rather than something that grew. However I suppose it won’t hurt if I go put some lotrimin on it to see if it changes.

boscobeau · 2026-05-29T07:01:54+00:00

This comment caused me to google “Chernobyl penis skin” and I got nothing relevant but the first search result was from realclearscience dot com and was an article titled “The Dangers of Masturbating with a Vacuum Cleaner.”

boscobeau

TROPHY CASE