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oh my god. I got blood work and had to provide a urine sample today and my kidneys are so much more fucked than I thought. I have 3 grams of protein now. When I had severe stage 3 albuminuria, I only had ONE gram. White blood cells and red blood cells in my urine too. And ketones??? I don’t have type 1 diabetes, I don’t know what that’s about. Still waiting on a few tests to come back (c3, c4, dsDNA, CRP, ANCA), but so far my results are 31% abnormal. yay? I haven’t been able to see a nephrologist despite how hard my rheumatologist tries. the paediatric ones think I’m too old and the adult ones think I’m too young. I get edema in my legs too. Going to be interesting seeing where this leads
update: my 2 year long C4 deficiency is gone! just to be replaced with a C3 deficiency. rip to my immune system #immunocompromised😍😍
why is it so fucking hard for people to understand that i have epilepsy bc i have lupus!!!!!!!!!!! ppl don’t understand how evil lupus is. like, crohns attacks your digestive tract, and rheumatoid arthritis attacks your joints, and type1 diabetes attacks your pancreas, and Graves’ disease attacks your thyroid, but lupus attacks your tissues and organs!!! that’s ur whole fucking body!!!!!!! it has the potential to attack anything it wants!! it attacks my joints, kidneys, blood vessels, skin, and brain. it’s a terrible fucking disease!!!!! people treat me like im malingering because i have “so many issues” BUT GUYS PLS ITS JUST LUPUS!! that’s what lupus is!!!!
i was referred to as an epileptic by a doctor for the first time yesterday. even after having the tonic-clonic seizure in february and my eeg showing epileptiform discharges, the most my neurologist will say is that i *may* have a “tendency towards epileptic seizures”. he won’t say i have epilepsy. he had been blowing me off for a year, saying my focal seizures were probably “near syncope”, or a “weird migraine”. it’s finally gotten to the point where he can’t dispute my epilepsy anymore, but he still finds a way to phrase in such a way where he doesn’t have to admit he was negligent. i told my new rheumatologist about my history with seizures, and she looked over my eeg. she said i should be medicated for epilepsy. but my neurologist will not put me on medication until i have another tonic-clonic seizure, and unfortunately it’s not really her decision. i told her that my neurologist said that eeg’s can show epileptiform discharges in 1% of the non epileptic population. she laughed and said “you’re epileptic, sweetheart”. it was such a throw away statement for her, but it meant so much to me. this is one of the first times my seizures have been taken seriously. i think things r finally looking up