#i can't eat most solid foods anymore or talk for longer than 5 minutes or exercise without experiencing severe nerve/joint pain | Explore Tumblr posts and blogs

sheryl-lee · 9 months ago

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hey so i apparently have had a rare idiopathic degenerative joint disease that has been attacking my jaw structure/function since i was a kid. and the only permanent solution for it is upper jaw surgery and a total temporomandibular joint replacement :)))

#i can't eat most solid foods anymore or talk for longer than 5 minutes or exercise without experiencing severe nerve/joint pain #i *just* recovered from an ED and im so scared about undoing all of my progress because i can hardly eat food and i'm quite thin as it is #and i definitely won't be able to eat much for a month after surgery #i can feel my face and my airway collapsing more and more everyday. sleeping is difficult lately and i'm always tired #being happy about anything feels impossible when it hurts to breathe and talk and smile and exist #i looked at my x rays taken about a month apart and the joints (condyles) have visibly degraded on both sides. in just 30 DAYS.#that's how aggressive this disease is. when it's active it can progress so quickly in such a short amount of time and cause horrific damage #the fact that most surgeons don't even know about it or know how to treat it properly is... wild #i read somewhere that 95% of people (mostly women/AFAB) with icr go undiagnosed #which is why it presents as rare. because no one is trained to recognize literal bone loss in the jaw as it happens until nothing's left #i just feel like a burden for having my parents waste so much time and money on orthodontics that only accelerated everything #i hate that i blame myself for not knowing any better. when in reality i was a child who was gaslit by medical professionals for years #i'm going to meet with a surgeon in 2 weeks to start the whole process but i have no clue how i'm going to be able to wait until then #idk i'm just really having a tough time and needed to vent a bit :/

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