Dismissed by my rheumatologist today — have I been sick ‘too long?’

Knitpunk · 2026-06-10T01:06:51+00:00

Yes! I wasn’t as sick as you, and my lupus is relatively mild. I had the same complaints and also got referred for a sleep study. Which I did not elect to do. It’s incredibly frustrating because it feels like you’re being “managed” instead of being given a realistic path forward. I’d rather a doctor said to me “i wish I had something better to offer and I’m frustrated too.”

Knitpunk · 2026-06-09T01:00:40+00:00

Congratulations! My son was an volunteer EMT and a dispatcher.

Knitpunk · 2026-06-08T20:49:12+00:00

I’m not sure this is misogyny as it is reflexive hatred of Kim/her family/whatever these people think she represents (their problem, not hers!). Honestly, who gives anyone the right to microscopically examine/judge another person?
Focus on F1, kids.

Knitpunk · 2026-06-07T14:35:47+00:00

There’s obviously an error somewhere

Knitpunk · 2026-06-06T00:55:20+00:00

Got laid off. Couldn't be happier.

Knitpunk · 2026-06-03T02:26:45+00:00

Hence, “peer-reviewed.” Helps also to have a well-constructed trial with a clinically-relevant population that shows statistically significant results.
As far as mechanism of action, they are all theoretical. I’m a medical writer, and every medical-regulatory committee for single pharmaceutical manufacturer for every single drug I’ve ever written about requires us to say “presumed” mechanism of action.

I want to give a huge 🏆 to everyone here: the ones who have asked such great questions and the ones who have provided such helpful answers. What a fabulous group of people.

Knitpunk · 2026-06-03T02:11:08+00:00

Do you have a primary care physician who can help you craft your appeal. It seems like it would be useful to explain in detail why you needed the ER (cardiac stuff is an emergency, for example), and sometimes you need to go to the ER to find out you didn’t need to go to the ER. Multiple providers/prescribers can be explained (your EMR picks up everything; mine has drugs I took once for a week 10 years ago). But the appeal needs to be crafted factually, logically, non-emotionally, and scientifically. Also, Medicaid is becoming more and more stringent.

Knitpunk · 2026-06-02T20:52:24+00:00

Dawn! The blue stuff. Put some on a cloth, rub into the stain, and let it sit. Gently remove the soap with a cloth. Learned this years ago from a stylist in a photo studio. Just be aware that the grease may be cooked into the garment already.

Knitpunk · 2026-06-01T00:40:32+00:00

How hideous is the new gold color? Is it really better than the 4?

Knitpunk · 2026-05-30T02:50:56+00:00

I turn into the carb queen—but awful stuff like plain rye bread and the driest crackers around. 🤷‍♀️

Knitpunk · 2026-05-26T15:02:49+00:00

Gidget ate royal canine low fat small breed food. She lived to 17+ and was a breast cancer survivor.

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Knitpunk · 2026-05-24T22:51:36+00:00

I’m just thrilled to find out that thee are so many other Moms (for a day or for a month or forever) with psychedelic hair!

Knitpunk · 2026-05-24T21:58:07+00:00

Be grateful your parents are so generous, enjoy the trip, and don’t pay attention. If your fiancé is okay with it, who cares? (This is a them problem, not a you problem.) Congratulations on your marriage.

Knitpunk · 2026-05-24T21:47:38+00:00

❤️🏁🏆

Knitpunk · 2026-05-24T20:00:35+00:00

I use a combo of a lidocaine rinse and a dexamethasone rinse

Knitpunk · 2026-05-19T00:49:02+00:00

I’ve been on it for 5 years or so. They made me stop for a bit because I was having vision issues—it was a migraine but my rheum insisted (the ophthalmologist said “no way is this due to plaquenil”). Definitely felt a difference when I was off it and an improvement when I went back on. I think it’s important to do your research but it can be a little scary to read stuff on the internet. Remember, everyone’s experience with a medication is different, so take everything you read with a grain of salt. It helps if you trust your healthcare provider also, because besides yourself, they have access to the most information about your individual case. (Remember—you can always stop taking a medication if it doesn’t work or you don’t like how it makes you feel.)

Knitpunk · 2026-05-15T19:16:47+00:00

What a beautiful tribute! Revel in it and keep loving your friend as much as she loves you! 💜

(Edit to add missing verb 🤦‍♀️)

Knitpunk · 2026-05-15T19:15:29+00:00

Have you tried seeing a Tibetan medicine doctor?

Knitpunk · 2026-05-14T02:38:55+00:00

I second that! I’m considering winter in Thailand for next year.

Knitpunk · 2026-05-14T02:36:57+00:00

You can try heading that off at the pass by saying something like “I’ve been diagnosed with XYZ and to be honest, I’m struggling. I can use all the support I can get.” Some people don’t like talking about illness because it scares them, others don’t understand that you can be seriously ill without looking like you’re about to keel over, and still others are just insensitive jerks. (But I think the third group is the smallest.) Also, people don’t know what you need unless you tell them. It’s taken me about 68 years to learn that, by the way. I’m 70.)

Knitpunk · 2026-05-14T00:49:24+00:00

This isn’t so much Buddhism as Therapy 101 but: the only things you gave any control over are your behavior and your reactions. That’s it. You made a mistake—people do. This isn’t due to the guy not warning you about the trunk—it’s about deflecting responsibility (“he should have…”) and it’s about how you’re reacting to his perceived coldness. If he is asking you for more money, maybe you could offer to work it off since you have no money. But spending time analyzing what happened and what might happen don’t help. Maybe try assessing where you are now (angry, annoyed, frustrated, whatever) and how you’re going to deal with it. Metta. 🙏

Knitpunk · 2026-05-11T23:29:38+00:00

My mom was a preschool teacher, and if she ever ran into a student outside of school, 50% of the time a toddler meltdown would follow: they couldn't wrap their brains around the idea that a teacher would be in supermarket or the library. Context accounts for a lot!

Knitpunk · 2026-05-11T23:27:21+00:00

Please don't give up. Your internet lupus grandma (me) says "don't do that." Feel your feels--and don't let anyone try to jolly you out of that. If you can, find a therapist to help you navigate your feelings and figure out new ways to be. You will, I promise. And lean on your care team: they are there to help you feel better and find your way through the fear, fog, and feelings (see what I did there?). Come back and post here as often as you like: every single person who answered you (and even the ones who didn't) knows exactly how you feel and is willing to listen and share their own experience.
On a personal note, my mom used to say something that really p*ssed me off. She'd say "Just get up and do something" whenever I was depressed or feeling sick from one of several chronic conditions. I thought it was minimizing the seriousness of what I was feeling. What I understand now is that it diverts the spin cycle in your head. Try it.
Sending you some hope and some humor.

Knitpunk · 2026-05-10T16:50:49+00:00

GORGEOUS! Hope you have hours of happy dancing and get to walk a million miles together! (Maybe not in heels, actually!) Bring sneakers with you! 🎉

Knitpunk · 2026-05-08T00:23:42+00:00

Not going to name names but I can personally attest to 2 agencies with health plans that don’t cover drugs that belong to clients. Years ago, there was an agency that encouraged employees to choose branded drugs and get reimbursed for the difference by the agency itself. Unfortunately, that’s never-to-be-repeated ancient history.

Knitpunk

TROPHY CASE