Autoimmune Disease - Blog Posts

how it feels when you go to the doctor and they actually listen to you and your symptoms and the skilled doctor finds a bloodwork test and you find out your body isn't just crippled from physical injury, oh no.. It's also because your body is killing itself because it got confused /j

Me: Okay, I have really bad joint pain and fatigue. My Sjögren’s syndrome and my pseudogout must be acting up. Google, how do I deal with Sjögren’s symptoms?

Google: You should stay active and get some exercise.

Me: okay, well that’ll be a little tough with how I’m feeling, but I can manage a walk or something. What should I do for the pseudogout?

Google: Rest. DO NOT exercise.

Me: Okay— okay but— but for my Sjögren’s, aren’t I supposed to—

Google: Yes for the Sjögren’s you should be moving moving moving don’t rest too much or it gets worse

Me: Okay well—

Google: But also remember the pseudogout DONT MOVE, don’t do anything, rest rest rest or your joints will be fucked forever

Me: I—

Google: But also get off the couch RIGHT NOW, your Sjögren’s, you need EXERCISE

Me: ….how am I supposed to—

Google: FUCK you

So I’ve been on Celebrex for like 3 1/2 months now, had to stop taking it recently because it was giving me some GNARLY nausea and oh boy. Oh goodness. I did not realize HOW MUCH Celebrex was helping me until I had to stop taking it entirely.

Like it wasn’t completely curing me or anything, I was still having constant joint pain and fatigue, but it made my symptoms… semi-manageable? Kinda? Like I truly forgot just HOW bad it felt to have my pain go untreated.

Luckily after my last intense flare up I made sure to really build my work schedule around my pain and prepare things to run on their own incase I needed to take it easy for a while but holy shit. I feel Very Bad™️ right now.

Okay, fellow disabled folks who get hot flashes, does anyone have any ACTUAL advice for dealing with them? Every time I try to look it up Google thinks I’m a 60 year old post menopausal woman and tells me to call my grandkids and use a fucking douche or something

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) ”

One thing I haven't seen talked about much when it comes to chronic illnesses is how it ages you. By that, I mean making you feel older than you really are, as if you jumped decades all at once. I'm only in my twenties, and yet I often feel like I'm more than double my age, especially when I'm around others my age.

They all seem so, idk, full of life? I've gotten so used to being tired constantly, to getting sick at the smallest change of plans, and avoiding traveling and I guess sometimes I forget that other people just..... don't have to do those things. I wish I could be as adventurous as my friends. It hurts knowing that in some ways, I can never experience life as everyone around me does. It's like I skipped straight over my twenties and went right into my fifties. Some days I think maybe that isn't true, and that I might actually be able to keep up with healthy people my age. But then I try to go out with people, or plan going to an event, or even just hang out at someone else's place, and I'm reminded of how I'll never quite have the freedom of being young and healthy. The "prime of my life" is being living in the shoes of someone far older than what my birth year would imply.

There's just so much about my life that feels......out of place for someone my age. The random pain, the unexpected nausea, the piles of pill bottles, supplements, and injections. Going to the clinic so often that my mom and I are on a first-name basis with the nurses and the doctors. Remembering how to pronounce and spell the names of like 6 different prescriptions. Knowing what a colonoscopy is like, and having had three of them before even being old enough to drink. Having my first priority when job searching be for something with great health insurance. Worrying not about if I will get cancer, but when. Knowing that someday, any day really, I may not respond to medication anymore. That at some point, major surgery may be my only option. Spending several months thinking that I was dying at only 14. Needing to cancel or postpone plans often because I can't leave the bathroom. So, so much that just isn't that common for people my own age. I know that there are lots of others out there with experiences like mine, but I've rarely if ever come across them.

It's hard trying to spend time with anyone. I feel like I'm only going to drag people's mood down and ruin our plans, even if I'm the one that made them. I guess maybe I should try to acknowledge my limits more and accept that I might need to take it easy. But deep down, I want to live like a healthy twenty-something-year-old. I want to make those spontaneous plans, to go out and do something exhausting, to go somewhere in the middle of nowhere with no bathroom to be found and feel confident about it. To party, and fall in love, and take that internship opportunity, and do all the exciting stuff that college has to offer. But I know that I can't in the way that I want to, and that maybe I never will.

It hurts that I will likely never experience the so-called "best years of my life" in the way that I had hoped for before I was diagnosed.