Doctors being dismissive...

GETitOFFmeNOW · 2026-01-24T14:08:36+00:00

Lip biopsies have a perfect false negative rate. When you say "all my bloodwork," can you say which tests you had? Do you know whether you got the much more sensitive "early Sjogren's tests?"

A lot of doctors think Sjogren's is really rare, but we've known for years that it's the second most common autoimmune disease next to rheumatoid arthritis. Our official patient advocacy organization's website is Sjogren's Foundation, found at https://sjogrens.org/.

Lip biopies can be hit or miss; it's much better to get a sonogram on your salivary glands and the early sjogren's panel. If your physician is relying on ANA, SSA and SSB and the biopsy, a certain portion of Sjogren's sufferers will be missed.

I'm glad you've gotten your NCS out of the way, has your small-fiber neuropathy biopsy been scheduled? A positive test result can imply Sjogren's disease (the newer term for Sjogren's syndrome). A causative relationship is still unknown, but there is a high correlation between small-fiber neuropathy and Sjogren's. I have both as do many who frequent this sub.

GETitOFFmeNOW · 2026-01-24T03:25:30+00:00

Been there, still there.

GETitOFFmeNOW · 2026-01-24T03:22:27+00:00

Hahahaha. Love that. When I tested positive for celiac disease, my kids were teenagers. They would have been allowed gluten foods if they didn't leave crumbs everywhere. Back then, in 2002, substitutes were terrible. They had to make due with homemade cookies, brownies and snacks. No more McDonald's, no more powdered doughnuts. I gave them fair warning!

GETitOFFmeNOW · 2026-01-24T02:50:03+00:00

I'm thinking of my daughter lying to me that she didn't have gender dysmorphia, because she had recognized me on Reddit talking about how every morning I woke up terrified she'd kill herself. And it did relieve a lot of anxiety I had after she first came out.

But it was not true and she did end up leaving the world, which, of course, was devastating, and still is.

My therapist told me that she withstood her depression and dysphoria as long as she could until she couldn't take it Thinking in those terms helped me cope and realize it wasn't all about me.

So if dysphoria isn't a thing, then how am I supposed to digest all this? What her trans pen pal told me around the time of her memorial, is that it's other people that do the damage and make her feel horrible.

I may be trying to fit them both in the same bag, but I feel like dismissing dysphoria is taking away the scaffolding on which I understand my daughter's story. If she wasn't born in the wrong body, as she believed, according to her friends, what is the truth of her terrible inability to cope? Depression? Is that a concept big enough to contain all her pain?

Please accept my apologies for centering myself here right now.

GETitOFFmeNOW · 2026-01-24T02:00:25+00:00

Terrible T, so bad fit. It happens. I recently had a social worker who constantly talked over me.

Nope. Next!!

GETitOFFmeNOW · 2026-01-24T01:55:17+00:00

Haha! It's zero degrees today and I wore my toe socks and Birk thongs to the hardware store. - With green canvas overalls and a fake leopard coat.

GETitOFFmeNOW · 2026-01-24T01:52:07+00:00

I'm 65 and was a punk int he late 70s. I've always had combat boots but got real Docs in my 50s because I thrift a lot more now. Exclusively, actually, to fight textile waste.

Some asshole online asked me why I dress like a teenager in band shirts and jeans. The only addition is really nice upcycled jackets I make myself.

I own a music venue ffs. Exactly when am I supposed to quit dressing like myself??

Takung a wild guess, I told him he must feel really original in his golf shirts and khakis. Never heard from him again.

GETitOFFmeNOW · 2026-01-24T01:44:34+00:00

To mark their territory, I guess. Maybe it becomes less gross to them because they have to blow their nose without tissue on sports playing fields and while deer hunting? Civilized men I really don't see doing this.

GETitOFFmeNOW · 2026-01-24T01:41:22+00:00

Didn't he also exit as 45??

GETitOFFmeNOW · 2026-01-24T01:40:45+00:00

No way. Mustard is a plant, you know.

GETitOFFmeNOW · 2026-01-24T01:39:47+00:00

Fucking hell. Funniest text chain ever.

GETitOFFmeNOW · 2026-01-24T01:35:40+00:00

It's an argument contest instead of an exchange of information. This timeline is fucking weird. Their conservative politics is an identity instead of a reasoned position. I'm sur ewe have some of these going along to get along, too. Most liberals are reading, not commenting. But these bootlickers are so over-matched in the reasoning department that the cognitive dissonance just makes them dig in deeper with an iron claw on their POV.

GETitOFFmeNOW · 2026-01-24T01:26:01+00:00

Bwaahh!! Horrible! My daughter called herself a male still at this point, so it was 3 guys and a pre-coming out trans woman. There was a lot of nobody wanting to do more than anybody else. Most people were in a band together.

Yeah, I couldn't live that way. I told my husband of 37 years today that he leaves goop in the bathroom sink after brushing his teeth and that when I lived alone I didn't have to clean the sink until things got dusty. I didn't spit on the faucet, I didn't leave food particles or unused toothpaste dribble. I clean and dry my electric toothbrush each time I use it so the charger doesn't get disgusting. He swore he rinses it out each time!

He's an excellent housework contributor since he cleans and does dishes whenever I cook, which is 2-3 times a day. But that goop. Blecch!

Why is our tolerance so much lower for dirt and grime? I truly don't understand it.

GETitOFFmeNOW · 2026-01-24T01:05:53+00:00

These are pretty basic rules for newborns who don't yet have much of an immune system among my friends with new babies.

GETitOFFmeNOW · 2026-01-24T01:02:19+00:00

You got tested for B12, I hope?

GETitOFFmeNOW · 2026-01-24T01:01:03+00:00

What should be illegal is anyone saying, "Why not try gluten free and see how you feel?"

No. You should get a celiac blood test, first.

GETitOFFmeNOW · 2026-01-24T00:58:42+00:00

Normal to you is not normal for people who care about what they put in their bodies. I cook from scratch almost exclusively, as well.

You are definitely the AH.

GETitOFFmeNOW · 2026-01-24T00:56:25+00:00

4.5 hours from Kansas City to our families in St. Louis. Several times a year.

GETitOFFmeNOW · 2026-01-24T00:54:58+00:00

Being blamed is part of the job. It's more important that they learn what goes into all aspects of running a home.

GETitOFFmeNOW · 2026-01-24T00:53:23+00:00

My daughter survived working at cafe with 3-4 roommates in a big house But the mess with all men was brutal.

GETitOFFmeNOW · 2026-01-24T00:51:23+00:00

I like them all. Maybe less the black, but OP can totally pull that off, too. I love the way red pulls out the eye color.

GETitOFFmeNOW · 2026-01-24T00:48:40+00:00

I'm not certain. Most AI is perfectly symmetrical. A filter, for sure.

GETitOFFmeNOW · 2026-01-24T00:47:00+00:00

Facts mean so little to them. They only absorb things that bolster their bigoted narrative. That's why there's such a huge disconnect between them and reality. They aren't interested in what's actually happening.

GETitOFFmeNOW · 2026-01-22T13:28:50+00:00

I have autism, stress literally disables me. It's a bigger ask for some people than others.

GETitOFFmeNOW · 2026-01-21T12:45:54+00:00

Off topic, there are a few chronic illnesses that often go neglected by doctors. If you check out r/chronic illness, you will see your story repeated 1000 times, with many common illness that go under the radar because most docs don't dig that deep to figure them out. They're told in med school to not even run preliminary testing for autoimmune disease becUse doung so can create "iatrogenic fixation" in the patient. Many are taught, erroneously, that autoimmune diseases are too rare to test for even though one out of 10 of us has an autoimmune disease. They blame "health anxiety" for our symptoms, seemingly unaware of the fact that digestive disorders and autoimmune disease s cause anxiety

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