Lupus - Blog Posts

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.

Anyway don’t be like me, listen to your body and take breaks when you need to. That goes for stuff other than exercising too, like if you’re doing any type of activity and you feel your brain and body start to be like “heeeeeeeey can we slow down?” That’s a sign that you should take a breather, or dial it back, or whatever. Knowing how and when to listen to your body is your most important tool to manage your symptoms.

It’s also an important tool to help you like. Be a happier, chiller person.

Yet again stuck in the pattern of

Works out to help my fatigue -> experiences joint pain because I was too rough -> takes a day to rest because of my joint pain -> experiences fatigue because I haven’t been working out -> works out to help my fatigue -> becomes the chronically ill equivalent of Sisyphus, trapped in a self inflicted loop of being tired and achey all the time

It’s so weird having my physical health tank when my mental health is the best it’s ever been.

Like whenever someone asks me how I am I’m just like “well my bones hurt, and my muscles hurt, and I can work maybe 3 hours a day before I collapse from chronic fatigue. But like the world keeps on turning, so I’m vibing dude B) ”

Really wish all the “low impact” exercise routines I find weren’t hyper focused on like squats and lunges and shit. Like bro, my knees DO NOT WORK. They simply do not function properly. If I do 15 squats today I’m not going to be able to walk properly for literal days.

…….but like I’m so tired and I NEED to work out to help with my fatigue, and I don’t have the attention span for yoga right now. So I do the five bajillion squats anyway.

And I’m stupid so I forget that that’s a bad idea, so when I’m in an incredible amount of pain just walking up and down the stairs for the rest of the week, I’ll be like

I’ve been exercising to help my fatigue, unfortunately I keep pushing myself too hard and worsening my joint pain…. which then makes my fatigue worse.

BUT it’s okay because if I need more energy, I can just exercise! Again! And if I injure myself again and my fatigue gets even worse, it’s okay, because if I need help with my fatigue, I can just EXERCISE!!! And then if my joints get worse because of that and I get more fatigue, it’s okay, because I can just EXERCISE MORE, AND—

Any other chronically ill folks have advice on dealing with hot flashes? My autoimmune disease is kicking my ass rn

Yo I tried a new anti-inflammatory for my joint pain and it works AWESOME

unfortunately it is also making me EXTREMELY DEPRESSED so I am going to have to stop taking it immediately

yaaaaaaay :)

I’m lupus until proven guilty

…Like innocent until proven guilty?

Is that anything?

I’m not TECHNICALLY diagnosed with lupus yet, because I have to see the rheumatologist for more tests. But my ANA is crazy, I definitely have some kind of autoimmune disorder, and I tested negative for RA and Sjögren's syndrome, so like. It’s PROBABLY lupus.

And I’m tired of saying I have “something” or “some weird autoimmune thing” or whatever. I just wanna put a name on it, and right now, that name is lupus.

I’m not TECHNICALLY diagnosed with lupus yet, because I have to see the rheumatologist for more tests. But my ANA is crazy, I definitely have some kind of autoimmune disorder, and I tested negative for RA and Sjögren's syndrome, so like. It’s PROBABLY lupus.

And I’m tired of saying I have “something” or “some weird autoimmune thing” or whatever. I just wanna put a name on it, and right now, that name is lupus.

The duality of “I should get up and move around, it’ll help with my pain” vs. “I can’t move at all, I’m in too much pain”

Like yeah, if you struggle with chronic pain you should try exercise, because it probably will help. But in order for exercise to even be an option, you have to be in an at least semi-manageable amount of pain to begin with.

Got the results for my blood test back

Listen I know the only way to figure out what’s making me sick is to wait for my lab tests to come back and see what the doctor says.

And I know that panic googling autoimmune diseases that I MIGHT have is 1. Not productive and 2. Not healthy.

…………………but I read this article about LUPUS last night, and I—