Autoimmine Disease - Blog Posts

trying to figure out how to submit myself as a case study cause what the everlasting fuck is wrong with me !

My insulin pump doesn't make me unattractive. Neither do my scars, or all the tubes that hang off of me, or the needles and ports and machines that are attached to me at all times. Parts of my body don't work like they should. I have neuropathy in my hands and retinopathy in one eye. My kidneys need help to work. I've been on beta blockers since my 20s because my heart doesn't work right. That doesn't make me undesirable. I'm worth having sex with. I'm worth pursuing romantically and sexually. I am a whole person that deserves love and to feel good about myself.

feeling sexy and being disabled are things that can exist together. I can have medical devices and a feeding tube and still feel sexy, and i really dislike that people think that the two are completely separate and cannot exist together. I'm allowed to feel confident and love myself and the way i look even if i look a little different, and every other disabled person is too. I love myself and i have a feeding tube, not i love myself but i have a feeding tube.

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

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

For the record I do really enjoy yoga, but when my ADHD’s real ramped up the idea of pulling up a yoga video and spending ten minutes stretching and being alone with my thoughts is just not on the table. Like I need something I can do completely independently so I can pop on a really dumb podcast and stop thinking about being in pain for five seconds. And yoga is great but I don’t have the concentration to guide myself through it without instructions.

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

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

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

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

so sick of my body. pretty much been confined to my bed for weeks. sleeping shitty because of pain and my mental health has taken a hit.

just ughhhhh.