Autoimmune - Blog Posts

PSA

If you have chronically ill and/or immunocompromised friends, you have to tell us when you are sick. Not just with COVID or the Flu. Even a cold can be a massive deal for us. This is not optional.

And if we tell you we cannot be around you for a while for our own health and safety, you should know it's not you, but you also do not get to be offended.

Also, unless you have a really good reason not to, wear a mask when you're sick. It's a small sacrifice to protect those around you, it's really not hard.

Thank you.

recovering from a simple cold really takes incredibly long when you have a chronic illness...

like please i wanna be able to do at least some things again

Weird kind of validation to having to call a physical therapy session early for the third time in a row. I got a cold a couple weeks ago so my heart rate is still being even stupider than usual. It's incredibly frustrating obviously, but it's also honestly nice to see some stats clearly representing a problem after my doctor refused to refer me to a cardiologist for more testing because he ran a preliminary test wrong 🙃

Also got told I should be walking less to recover unfortunately. I need to PACE and go for WALKS. Real stupid I think.

What doesn't kill you flares up and tries again

Doctors are like: ughhhhh. You're confusing. Come back if you die

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

Me: Okay, I have really bad joint pain and fatigue. My Sjögren’s syndrome and my pseudogout must be acting up. Google, how do I deal with Sjögren’s symptoms?

Google: You should stay active and get some exercise.

Me: okay, well that’ll be a little tough with how I’m feeling, but I can manage a walk or something. What should I do for the pseudogout?

Google: Rest. DO NOT exercise.

Me: Okay— okay but— but for my Sjögren’s, aren’t I supposed to—

Google: Yes for the Sjögren’s you should be moving moving moving don’t rest too much or it gets worse

Me: Okay well—

Google: But also remember the pseudogout DONT MOVE, don’t do anything, rest rest rest or your joints will be fucked forever

Me: I—

Google: But also get off the couch RIGHT NOW, your Sjögren’s, you need EXERCISE

Me: ….how am I supposed to—

Google: FUCK you

Okay, fellow disabled folks who get hot flashes, does anyone have any ACTUAL advice for dealing with them? Every time I try to look it up Google thinks I’m a 60 year old post menopausal woman and tells me to call my grandkids and use a fucking douche or something

“You’re too young to be so tired”

Madame my brain is melting out my eyes from exhaustion, will you shut up

“You’re too young to be in pain”

I will end you.

This is kinda weird but I’m trying to figure out how weird my ankles actually are. I have over-pronated ankles but high arches, which apparently is strange because flat feet cause over-probated ankles and high arches cause under-pronated.

Over-pronated ankles look like ) (

Under-pronated ankles look like ( )

And normal ankles are straight | |

Please reblog if you care to so I can get a larger sample! It would be much appreciated!

I had a doctors appointment today and for the first time ever she gave me the review sheet instead of my mom. And I was looking over the review of systems. And the doctor didn’t ask me about any of them. But she denied allllllll of them. Despite my previous claims of cold intolerance, joint pain, muscle weakness ( I was wearing on if my braces for goodness sakes), fatigue and just general other symptoms I have that she KNOWS about. Denied all of them. Oh! And apparently I’ve progressed so far into hashimotos that I now have Hypothyroidism. And she didn’t mention that either. Was a wonderful day /src