Chronically Ill - Blog Posts

"looking forward" 18x24 oil on canvas

this one's about how easy it is to get depressed while chronically ill & disabled, and how i combat it by "looking forward" (😉) to the future and the good things it may have in store for me.

Some rando: You should think about stopping your prescription

Me: My pills make me not want to die tho

They: You shouldn’t want to die, that’s not normal

Me: Yeah that’s why I’m taking my pills

if you didn’t realize, ableism is actually bigotry and systemic ableism and inaccessibility are really oppression and it’s not something disabled people brought on ourselves by having bodies&minds that you think are inferior and therefore not worth fighting for. disabled people’s lives and wellbeing matter. we don’t have to earn our worthiness by doing “enough” to deserve a good life. nobody does.

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

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

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—

Me: Yeah so I’ve been having horrible joint pain, muscle weakness, and fatigue for the past several years that’s worsened dramatically in the last 2 months.

Dr: Hmmm…. Fatigue, you say? Do you happen to have any…… mental health issues??

Me: …..I mean I have an anxiety disorder, but I really doubt that—

Dr: That’s the reason, that’s why you’re fatigued. It is your ✨mental illness✨

Me: Okay but I’ve had anxiety since I was a kid and the fatigue is a recent issue, so—

Dr: So sorry to hear about how ✨MENTALLY ILL✨ you are and how it is causing literally ALL of your health issues😢☹️

Me: But my anxiety is way better than it used to be, plus like I said I’m having joint pain as well I really don’t see how that could be caused by—

Dr:

✨💫Mentally Ill✨💫

Health anxiety sucks because

You know what I changed my mind I’m not elaborating. Health anxiety sucks. That’s it, that’s the tweet.

My chronic pain doctor suggested I exercise more

I asked him “how?”

He looked confused. Said I should try a bit every day

I said “not when, how?” I asked what exercises I should do

He suggested half a dozen options that had all been explicitly banned by other doctors. I’m not allowed to run. I’m not allowed to bike. I’m not allowed to use my rowing machine or my punching bag.

I walk my dog whenever I have the energy and when it doesn’t hurt too much

What else can I do?

He told me I should exercise more

And then he changed the subject.

Am I ill?

Sometimes I start to wonder if I really am chronically ill. Do I really wake up every day with pain or am I just faking it all the time? I know other people actually have these issues and they are very much real, but to me, I don't know what is real for myself anymore. I try so hard to be normal, yet the pain comes back. It always will come back. I wake in the mornings with a killing pain surging through my jaw. I know that last night I must have been fighting monsters, swinging swords that allow me to defeat these dragons lingering in the mountains. Yet, today as I wake up the pain isn't from a dragon or those monsters I fought, it's from my trying to dislocate once more. The throbbing pain in my head isn't from being flung against the wall of a dragon's den, that pain is from my chronic migraines that linger in me causing it almost impossible to eat and hold my food down. That surging sensation that spirals in my belly, drifting up towards my heart and seeping through my veins isn't the poison of my enemy trying to defeat me at last, this is the anxiety that causes me to isolate myself until everything is fine again. The anxiety that holds me back from chasing these wild imaginations because I'm not okay. I don't think I ever will be okay, but am I really ill?

Life is 60% more copeable with random unhinged affirmations

sometimes it really sucks being a cg while also having two chronic illnesses because when one flares up the other does too, then i start to hurt and i wish i could spend more time taking care of my little one instead of making sure my flare up doesn't get worse and i make sure im bearing the pain

“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.

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

So true. I'll show up to the hospital (and it's bad if I'm at the hospital cause I'm broke ), and I will always, without fail, rate my pain firmly in the middle. Anywhere from a 4 to a 6. Cause like, it could be worse. It has been worse. And yet, here I am.

the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.

10+ has me reeling... here I am always telling myself my health issues aren't that bad.

This is a good way to explain the specific type of disheartening it is to receive "good news". It's not that I want something to be wrong with me, it's that something IS, no matter what the fucking blood work says.

The life cycle of a chronically ill aspiring author

Aka: me rn 👁💧👄💧👁

Aggressive Elder: Kids these days have no common sense! This generation has no critical thinking skills!

Me(19 and suffering from cognitive dysfunctions such as heavy brain fog, delayed reactions, memory issues, etc.):

Yes.

oh god, absolutely constantly. it's always have you tried yoga, and i have to say "well, justvlike the first sixty times you asked, yes i have, and no, it didn't cure me. that's not how it works." im a lazy ingrate for having to take bed days, and im giving in to my weakness for using a cane. it's the most insulting, invalidating, hurtful bullshit ever. and when it comes from family it's so much more painful because they should be able to see how much you struggle to do the things they constantly recommend

is anyone else with chronic and mental illness constantly lectured by everyone in their life about what they need to be doing to "improve" their life?

I'm just so tired of it. Every doctor, every family member, even my in laws now I'm just constantly told what I need to do better and reminded how I'm not good enough/not doing enough

why is accessibility so inaccessible… someone explain how this is supposed to make sense

if invulnerable means i dont feel the affects of my chronic illnesses, then i would probably do something super cool and crazy.

id clean my house.

30 whole minutes a month of pain/fatigue free cleaning??? do you know what i could accomplish??? id be unstoppable. maybe id also do a cartwheel or smth for funsies

If you could become immortal and invulnerable for 30 minutes once every month (it has to be all at once, you can't chop the time into smaller segments and use minutes separately), what fuckery would you commit?

anyone who thinks health issues end with walking out of the hospital doors, massive reality check for ya. there is no clocking out of chronic illness or disability.

surgery does not cure everything, medication does not cure everything. hospital cannot cure everything.

the amount of people in my life who believe that when i go to hospital, i will be discharged cured or symptom free is astonishing to me.

most of these people have known me long enough to have seen me through multiple hospital admissions and every time they come back to this way of thinking even though its never happened.

one of the worst parts for me about chronic illness is not having answers.

im a very logical and analytical person i love things to make sense i love patterns and reasons.

i have answers for pats of my health, and im so grateful for that, but the parts that i dont have answers for haunt me.

i think about it all the time. what if its not real and thats why theres no answer? what if im not explaining my symptoms right and thats why i havent had the right test that would give me the right answer.

i know logically that its a waste of time to think about, but i cant help it, i obsess over it. not understanding the world is one thing, but not understanding my own body? my own life? thats what gets me.

notalgia is so strange because what do u mean i long for things that remind me of the worst times of my life?

ITCHING to do stuff. ANYTHING lemme cook or clean or write or sew or draw anything please im so bored