Curate, connect, and discover
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.
oh my god. I got blood work and had to provide a urine sample today and my kidneys are so much more fucked than I thought. I have 3 grams of protein now. When I had severe stage 3 albuminuria, I only had ONE gram. White blood cells and red blood cells in my urine too. And ketones??? I don’t have type 1 diabetes, I don’t know what that’s about. Still waiting on a few tests to come back (c3, c4, dsDNA, CRP, ANCA), but so far my results are 31% abnormal. yay? I haven’t been able to see a nephrologist despite how hard my rheumatologist tries. the paediatric ones think I’m too old and the adult ones think I’m too young. I get edema in my legs too. Going to be interesting seeing where this leads
update: my 2 year long C4 deficiency is gone! just to be replaced with a C3 deficiency. rip to my immune system #immunocompromised😍😍
Does anyone else feel stuck at the age they were when their chronic illness started to take over their life? For me it feels like time stopped and I got mentally stuck at that age, even though I’ve obviously been aging physically. Everyone else ages around me physically, mentally, socially and emotionally. Everyone I grew up with has started to build a life for themselves and seems lightyears ahead of me when it comes to life experiences but I’m stuck in this cycle of living the same day over and over and genuinely forgetting how old I actually am.
i started hydroxychloroquine a few days ago. crazy im finally taken seriously. wow