chronically-ouch

Latest Posts by chronically-ouch

The Premium Package: Bonus Round

Bloodwork came back positive for GAD65 antibodies. So now my rheumatologist is assuming not just neuropsychiatric lupus, but also Stiff Person Syndrome and GAD65 autoimmune encephalitis, based on my imaging and other test results.

I guess we’re just collecting neuroimmune disorders like trading cards now. Got brain fog? Muscle spasms? Random hallucinations? Congratulations, you might qualify for the rare holographic edition.

At this point, it feels less like getting answers and more like unlocking increasingly cursed DLC. The collector’s set is not supposed to be this complete.

The Premium Package: Hospital Edition

So, remember how I said I got the premium autoimmune package? Turns out that includes an extended trial of Hospital™. Two visits in 30 days. No points earned, no free sandwich. Just new diagnoses, more needles than I can count, and a very weird moment where a nurse said, “You’re too young for this,” as if my immune system just missed the memo.

Here’s what we’ve unlocked on this adventure:

Neuropsychiatric lupus (NPSLE). Yep, my brain is inflamed. There are lesions, optic nerve swelling, and elevated spinal pressure just for fun. My CSF basically came back with a sticky note that said, “System under attack.”

Ground-glass lesions in my lungs. Which I’m told are not a fog machine in my chest but actually another marker of inflammation.

I also found out my spine is a bit dramatic. Turns out I have a healing fracture in my S1 vertebra that no one expected. I just thought that pain was part of my normal joint chaos. Apparently not.

I’m already on maximum-dose CellCept, doing Simponi Aria infusions, and plot twist, it’s still not enough. I can’t take steroids (they turn me into a medical emergency), so we’re moving to IVIG and Rituximab. A port is being discussed, and neurosurgery wants to chat about a brain shunt like it’s a normal Tuesday.

Right now, I’m in that in-between place. Grateful to have answers, overwhelmed by what they mean, and just trying to exist without my body throwing another plot twist. It’s like playing Autoimmune Jumanji, and I just rolled for “spinal tap.”

So if you’re still here, thanks. Thanks for caring, for checking in, and for not saying “but you don’t look sick.” If you’re on this ride too, I see you. And if you’ve got Rituximab experience, port tips, or just memes to throw at this mess, my inbox is open.

Still here. Still fighting. Still sarcastic.

Welcome to the Premium Autoimmune Package

Hi. I’m not new to being sick, but I’m very new to being taken seriously. That only happened because my body is currently collapsing fast enough that doctors couldn’t look away anymore.

I live with overlapping autoimmune diseases, but recently I got upgraded to the “CNS involvement” tier. Think brain inflammation, spinal pressure, hallucinations, cognitive fog, and one healing spinal fracture I didn’t even realize I had. I thought it was just my usual back pain. Turns out it was… a broken bone.

I’ve been hospitalized twice in the last month. A spinal tap showed my brain pressure was way too high, 32 cmH₂O, where normal is typically between 10 and 20. My spinal fluid was full of immune cells , 40% of them, when 0–5% is normal. My MRI has white matter lesions. It’s not MS. It likely neuropsychiatric lupus. It might be a weird intersection of multiple things. No one’s totally sure yet.

What I do know is I’m on IVIG now, possibly headed for a brain shunt, and trying to stay out of the hospital. Also, I’m trans and had to pause testosterone because of clot risks from treatment. No, there’s no workaround. Yes, it sucks.

This blog is my space to document what it’s like to be visibly declining after years of being invisibly sick. No pity required. Just here to tell the truth about what it’s like to have the Premium Autoimmune Package, full access unlocked.

Current Working diagnoses:

• Neuropsychiatric Lupus (NPSLE)

• Myasthenia Gravis

• Psoriatic Arthritis

• Intracranial Hypertension

• Ehlers-Danlos Syndrome