I’m so beyond angry that a rare undiagnosed medical condition has left me enduring severe pain, nausea, difficulty in eating, and bowel dysfunction for almost 20 years. I haven’t had it confirmed yet for sure, tests will have to be done, but possibilities have been raised around MALS and Nutcracker Syndrome. There’s also a strong possibility of gastroparesis. All of these are strongly correlated with the rare genetic disability I was born with. I’m still going to be appreciating food posts and sharing recipes. I’m not going to let it take that from me too. But I’m now facing the possibility of needing a temporary nasojejunal feeding tube (a nasal tube that bypasses a broken stomach and goes straight to the small intestine) to support my nutrition. Despite my efforts to keep eating I’ve deteriorated that badly now. Apparently a lot of people with my physical disability do end up requiring feeding tubes and none of the specialists I sought out fucking bothered to tell me. Nope, it must be psychosomatic! And worse than that, while I’m willing and know what assistance to ask for… if I can’t arrange it another way I still may end up having to repeatedly attend the ER to try and get some action on that. Which will mean repeatedly boarding my cat and waiting in a hospital for up to 12 hours only to potentially be told there’s nothing they can do. For as many times as it takes. (I’ve already done this twice to access a referral to gastro specialists in a different hospital, since the ones I had were actively unhelpful and don’t do the procedure I was asking for.) And then there’s refeeding syndrome to face. No pity please, I’m just incensed and having a rant.