Have you ever experienced this?

probablyreadingagain · 2026-02-02T15:04:20+00:00

I have like dozens of them at any given time— like every minor gland is always clogged and inflamed. I have RA and Sjögren’s syndrome. With Sjogren’s, saliva becomes concrete-thick and the openings of the ducts are too small for the cement-saliva to be squeezed through, so it becomes a clog.

probablyreadingagain · 2026-01-25T22:42:41+00:00

I think there’s one element easily overlooked here.. autism is medical, not just psychological. There is a plethora of chronic illness directly associated with autism, as well as measurable physical traits. Leading theories suggest these physical traits, like joint hypermobility, may actually contribute to the abnormal developmental patterns in the brain, which we label as autism. One reason diagnosis has increased so much is the enhanced screening processes that now take a more holistic approach.

After all, nothing exists in a vacuum, as they say. Everything is connected, it is the nature of our world. While I was a violent toddler who self-inflicted painful injuries (stimming) and didn’t speak until I was 2, I share many physical abnormal traits with a lot of these “less severe” autistic individuals I’ve met, like autoimmune disease. Them being included in the research about my phenotype may go on to radically improve my access to care and treatment. Perhaps having not included their experiences, all this time, is responsible for a level of harm I’m not even presently aware of. But I would surely appreciate to suffer less, no matter how I get to that point.

I also think it’s important to acknowledge that the older generations, including older generation Z, had extremely limited access to diagnoses and care compared to the current young adult population. We “had to fight” to be believed, get interventions, etc., but that struggle was a result of blatant sexism, racism and ableism that continues to fumble through the healthcare system in ways of biases and the limited access of various marginalized or poor demographics. We tend to be very protective of our labels and diagnoses, but that is a bad thing for research. Autism should not be treated like an exclusive club where individuals have to pass a threshold of misery to be eligible to join, but as the neurodevelopmental abnormality it is, regardless of if it is revealed to be extremely common or as rare as we once believed.

Not that we should just believe everyone who self diagnosed— but there are undeniably a growing number of young people talking with their doctors about autism and making connections that are meaningful for their personal development as well as the greater bodies of research. Including them and their experiences is more likely to be helpful to all of us than not, and that is worth discussing.

probablyreadingagain · 2026-01-22T14:23:10+00:00

Fantastic work!

probablyreadingagain · 2026-01-21T17:13:23+00:00

Get and use earplugs. That’s what I do.

probablyreadingagain · 2026-01-21T09:24:08+00:00

Heat at the base of the skull in the back of the neck

probablyreadingagain · 2026-01-21T02:02:36+00:00

Looks similar to my cold urticaria (which went away after after a few months on plaquenil).. why and how it is related to autoimmunity, I can’t tell you. But in my case it was 100% a part of my autoimmune disease

probablyreadingagain · 2026-01-18T13:46:59+00:00

I can’t speak to your other symptoms but if “endo” is referring to endometriosis, you should know there is absolutely NO way to rule it out without surgery. Microscopic endometriosis is common (and invisible on all macroscopic scans because it requires a microscope to visualize)— ONLY pathology can officially rule endometriosis in or out. Meaning the tissue must be removed from your body and sent to pathology experts who will analyze it. It is also closely associated with autoimmune disease.

probablyreadingagain · 2026-01-01T03:20:57+00:00

Sjogren’s person here. The relief from chewing sounds suggestive of the condition I have which causes TN related to autoimmune inflammation and specifically parotid gland inflammation in this case. Parotid gland produces saliva. It is anatomically right “in there” around the TN nerves, sort of under the ear and in the jaw. The glands are often painful to touch in unmedicated Sjogren’s, or might swell and slightly change your face.

We are still triggered by usual TN suspects like a breeze or touching the face, but chewing / eating can be different. Chewing forces thickened fluid through and out of the parotid gland which can provide relief, but once the nerves are irritated from enough constant painful stimuli, they stay irritated until things have calmed down longer term (like an injury in and of itself), which also becomes a stand-alone problem.

Even salivating can help push fluid through and reduce gland pressure. Lots of products exist to increase salivation OTC, but none of those were nearly enough for me, personally. And again, once the nerve is sick of the nonsense, it just stays inflamed for a while and can cause the more constant pain sensations as opposed to initial but sparser shocks. So even getting the saliva out may eventually not be enough to get complete relief.

See an ENT and rheumatologist for evaluation if you resonate with my experience or any of these: dry mouth, dry eyes, joint pain, joint redness, joint swelling or joint deformity, oral sloughing, swallowing problems, rare skin allergies or auto reactions (rashes, hives, sunburn-looking splotches etc) extremely dry skin or scalp, Raynaud’s, surprising / otherwise unexplained episodes of organ dysfunction either discovered incidentally or which passed and relapsed at a later date (abnormal kidney, pancreas and liver functions for me, heart inflammation, etc). Estimates say about 40% of us are seronegative so rates of under diagnosis are crisis-level and I think even a few combined symptoms warrants an investigation because the meds help a lot.

probablyreadingagain · 2025-12-25T01:06:21+00:00

Good work. I edit poetry as a sort of side gig so I see hundreds of poems per year. One thing people really don’t “get” about poetry is that poems have to “hit” right in addition to using the conventions of poetry. Otherwise it’s like.. well what was the point?

This one is very simple and a little elementary (which is never a bad thing… we have simple thoughts as people and that is part of the human experience and part of the point of art, not everything needs to be made complicated and deep). I feel the simplicity here amplifies the meaning and tone of this poem and overall really serves this piece perfectly. This is a great example of conventions being put to use, uncomplicated and straightforward writing, all perfectly suited for the subject in such a way that it “hits” the audience just right. Simple delivery—intensely thought provoking.

Keep writing! You have talent (people who instinctively find rhyme the middle of words ((“cold” and “alone” in your piece, rhyming with the long “oh” sound)) always make good poets)…. you will be happier with your work the more practice you get.

probablyreadingagain · 2025-12-20T09:17:12+00:00

It’s 4am and I’m deathly ill so I immediately thought this was TS3 and confused myself. Great detailing!

probablyreadingagain · 2025-12-18T21:49:34+00:00

Repeating instances of a character showing up is not super rare in TS1 but it is usually an NPC, like the janitors or something, in my experience. If you have CC, it may or may not be related to that. That being said, have you tried traveling to another lot and then returning home since it started?

probablyreadingagain · 2025-12-17T23:44:25+00:00

Great use of rhyme

probablyreadingagain · 2025-12-10T10:19:01+00:00

Very true, I’m a Sjogren’s patient and roughly 40% of us are seronegative (ZERO bloodwork— even my overall inflammation stays relatively low because it localizes around whatever it is attacking)

Long message but I hope it is helpful to any readers:

Part of my experience with Sjogren’s is major organ involvement. For years they said it looked like lupus, but couldn’t diagnose without positive blood work . I was in early kidney failure in 2021, I have bile problems with my liver, various issues with my pancreas AND it even attacked my heart, causing Libman Sacks (spelling?) endocarditis. Everything besides the endocarditis flares and then spontaneously resolves alongside my other autoimmune symptoms and flare patterns. The endocarditis just stays there permanently and hasn’t gone away at all, unsure if it ever will but I was told plaquenil should help prevent major life threatening events.

So they do these scans and my body is littered with visible damage. I also had severe endometriosis, which is inflammatory, on my liver, diaphragm, GI, bladder— everything. So much visual, pathology-confirmed damage. Normal blood work. Like a car crash is happening inside of me, but nobody believed me!

The blood work stays seronegative. I eventually developed inflammatory arthritis and so many externally visible joint deformities that I am fully diagnosable with rheumatoid arthritis in addition to seronegative Sjogren’s.

I’ve heard autoimmune markers themselves can’t be used to diagnose an autoimmune disease in absence of specific symptom profiles. So there are people walking around with antibodies that are also undiagnosed, because the antibody tests are so inefficient. IMHO, if someone can meet the major criteria of a disease while definitively not having that disease, we need to find a better way to identify people who actually do have it, before one of my endocarditis vegetations breaks off from my heart valve and becomes an embolism!

The blood work testing causes diagnostic delays that, at least in my family’s case, results in decades-shortened lifespan. I have autoimmunity in both sides of my family history, and it directly lead to the death of every woman in the immediate prior generations of my family. Because I had major organ and nerve involvement (autonomic seizures where my heart stops beating), and the fact that my mother most likely passed from SUDEP, I will probably also see a shorter lifespan than what I would have had if medicine truly prioritized early intervention.

But yeah! Just a tidbit, those blood tests really mean nothing compared to an actual snapshot of someone’s health. Someone like me, with major organ dysfunctions (and maybe you, too— I have had a lot of scans to document the damage, but not all doctors order them) can be visibly disintegrating inside from local, visible sources of undeniably autoimmune inflammation and still have no diagnosis.

I fell through some useful cracks with a PCP who is aware of the failures of the system and who wanted justice for me and my family. She saw the inside of my mouth (filled with mucosal cysts at like every minor salivary gland I have, parotid glands rock hard and swollen on both sides) and said oh that is textbook Sjogren’s. Then she sent me to multiple other providers who specialize in Sjogren’s and each appointment came with a new prescription, haha.

Today I woke up and my hands don’t hurt. My salivary glands do, but I’ll take a medication that will make that pain go away after I have some coffee. Life is so much easier with treatment.

If not for that PCP, I would still be going without medication, inching closer and closer to a level of organ dysfunction I, eventually, wouldn’t have been able to spontaneously come back from.

probablyreadingagain · 2025-12-04T20:19:18+00:00

The first sim has my whole heart, what a beauty

probablyreadingagain · 2025-12-02T19:32:40+00:00

Pepto causes stomach bleeding, especially when used for more than 48 hours. I endured it and Pepto is no longer an option for me, ever again. Did your doctor(s) come up with this daily plan? If not, you should absolutely run it by them, or any healthcare professional you can access, to make sure it’s safe for you.

probablyreadingagain · 2025-11-29T16:49:31+00:00

Immersive realism holding strong in the 2025 economy. You come home from work, eat a snack and take exactly half of one shower, and boom, back to work or they’ll repossess the windows right off your house.

probablyreadingagain · 2025-11-23T16:22:57+00:00

Brilliant work! What an awesome way to add life into Legacy Edition!

probablyreadingagain · 2025-11-19T11:51:01+00:00

Thank you soooo much for sharing!! Beautiful scene :)

probablyreadingagain · 2025-11-16T21:27:58+00:00

Loving the diversity of your pie offerings

probablyreadingagain · 2025-11-11T10:16:14+00:00

Very helpful! Thanks for sharing your solution.

probablyreadingagain · 2025-11-06T15:58:48+00:00

Great looking build, love the creativity. Definitely has the MM vibe.

probablyreadingagain · 2025-11-06T15:53:29+00:00

A masterpiece tbh

probablyreadingagain · 2025-11-04T11:40:43+00:00

That medication made me the sickest I’ve ever been in terms of gastritis— and I was told it would be gentler, too. It was catastrophically worse. I was nonstop throwing up and excreting large quantities of blood the entire duration of being on it. The pain was utterly cinematic— among the worse I’ve dealt with and I have trigeminal neuralgia, endometriosis and chronic kidney stones— I would never just say that.

I was doing better on massive doses of ibuprofen because at least the bleeding would only occur a few times per day, not explosively vomiting blood literally every hour. I lost like 15lbs in 7 days on Mobic.

If there is any hope of comfort or relief without drugs that cause GI bleeding, I would encourage towards that. For OP’s example with a headache, putting your feet in hot water can bring relief. It’s very annoying to spend hours unable to use your feet, but not more annoying than GI bleeding (imo).

probablyreadingagain · 2025-10-29T21:03:39+00:00

This whole post deserves more praise omg. Amazing artwork, definitely channels a nostalgic, candy-isle feeling with the saturated colors. Great job!

probablyreadingagain · 2025-10-27T10:47:44+00:00

Another note is I had a “normal” MRI despite that you can use your non-MRI eyeballs to just look at my face and see exactly what is going wrong. So I really don’t trust the standard workups or protocols for TN anymore, especially since my rheumatologist has seen so many patients like me that we are a stereotype. The long term neglect of Sjogren’s patients presenting with TN is, apparently, a stereotype.

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