chronic illness & other musings

[thelittlegrinch]

POTS feels like..

a permanent hangover without the party 🙄

[thelittlegrinch]

What if we're all just salmon?

Fighting our damnedest to jump upstream, reproduce, and die?

[thelittlegrinch]

Survival or something like that.

I guess that's the name of the game. I really don't know whether or not to try Briumvi. Something in my gut is so hesitant and mistrustful of the shiny infomercercials. Patient reviews and clinical trial tout high percentage of respiratory and urinary infections.

I narrowly survived septic staph twice and they told me next time, it would likely go to my brain and be incurable. Since it naturally lives on your skin and I get scraped and dinged like it's my job, I'm concerned about that too.

I'm not sure what the answer is, but somedays the weight of it all is crushing. I miss my old PCP who actually utilized critical thinking skills and listened to my concerns. Le sigh. On we go.

[thelittlegrinch]

Like a cracked out squirrel in a hamster ball.

I think I've been running on adrenaline for a few days. Now just waiting for the crash.

[thelittlegrinch]

Life gets weirder by the ticking minute. Never did I imagine any of this. Never could I. Or would I, had I even been given the prompt. So often, days feel like: where do I go from here? And the only answer is: onward. Forward. We just keep living. No matter the uncertainty, darkness, disdain, or plethora of other emotions. Simply, onward, my friends. I implore you. xo

[thelittlegrinch]

Chronic illness is the world's worst roller coaster.

0/10 do not recommend, will give you trauma and whiplash in 2.7 seconds

[thelittlegrinch]

Idk, my bff Jill?

I'm not sure if it's health stress or life stress but my cup runneth over. I'm not an even-keeled soul and I used to like that about myself. But now it's less fiery ambition and more burn it all to the ground. Not sure how to get back to the former. TISNF 🤙

[thelittlegrinch]

"I don't know what I'd do if I were sick as much as you."

You'd jump off a bridge or you wouldn't.

It's a daily choice I make to continue living.

And listening to shit like this.

God grant me patience.. or a short prison sentence.

[thelittlegrinch]

A pile of ashes with eyeballs.

Yup, that's me. Or what I assume will be left by the time my body fries itself into oblivion. I always wanted a name for what felt like it was melting my brain, but now that I know, I don't actually feel any better about it.

Since I got an MS diagnosis summer of '25, I spent 6 months going full ostrich mode head-in-the-sand ignoring it. Then I felt so shitty, I caved and tried Kesimpta. That felt more toxic than any medication I've ever put in my system and I lasted through the loading doses and one monthly injection.

I've had lesions on my brain for years, oligoclonal bands in CSF and optic neuritis too; they've been toying with this diagnosis like a demented cat with a battered mouse since 2016. So what's the push to get me on a DMT now? Does it even matter at this point?

Nevermind the fact that if I hadn't read my MRI reports where some blessed tech quite literally spelled it out - active demyelination indicative of MS - the doctor wouldn't have even diagnosed me. Yet again. I so deeply mistrust the US medical system. My motto: "They will kill you if you let them."

Docs were not concerned about the reaction to Kesimpta then recommended Briumvi. Which would last longer in my system. 'But it's all just trial and error.' Yes, and I'm apparently an overgrown lab rat. I'm at a total loss and not sure what the way forward is here. Giving up sounds great, but for some godforsaken reason, I keep fighting to exist and maybe even lead a meaningful life. Cue eyeroll. But on we go.

[somewherehereiam-blog]

Chronic illness forces us to be physically dependent on others while requiring exponentially more mental and emotional independence.

[thelittlegrinch]

Something about other people's chronic positivity in regards to my health makes me want to throw up in my shoes.

[thelittlegrinch]

Chronic illness is more like..

Burning a birthday candle with a blow torch than burning it at both ends. 🕯

[thelittlegrinch]

Having invisible illness is like having an imaginary friend.

For years everyone was just denying its existence, rolling their eyes whenever I mentioned it, downright hostile about it. Hell, doctors tried to have me committed over it. So I spent years talking myself out of it, too. Denying symptoms, telling myself what I experienced was normal, and I was crazy or it was a personal short-coming.

But here's the real mind fuck: when there is finally clinical evidence, now they wanna know what Drop Dead Fred's quirks are. When he acts out, what he does, and how often. By now, I've been living with the fucker so long I barely even notice. We just found a way to co-exist. How should I know what's not normal? And how dare you wait so goddamned long to ask the question?