Deborah’s Story

Site created on February 15, 2021

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Newest Update

Journal entry by Chiyoiche Toshi

here we are some time later. been to er, and back. no help. they literally sent me home, and said "we dont know why your chest hurts, everything is perfect!" i am in disbelief. if everything was fine. why do i feel like this? they didnt even offer any help with the lupus. just told me i probly had something "viral". 

sigh. at least my primary takes me seriously. shes so nice. but i am still scared. i am literally losing seconds, minutes sometimes it feels like. i know its part of the cognitive issues of lupus. but it sucks. imagine this. you are watching a video or a persons perspective doing normal things, then u see skipped frames. like, their fine one moment, then the person is a frame or 3 later jump. youd notice it right? well, try having it happen to your brain. hah! its like personal b-roll. i feel like sometimes with the lupus and heart issues, my body, my brain just goes. I QUIT! here and there. like, even it needs a break from this stress.

ive had new symptoms. sever muscle weakness, and soreness. to be honest, i was slightly afraid it was a component of a stroke, or bad blood clot. as the initial was was only on my right side. and the sharpest pains, by my iv line site. they had to go in to thr meaty part of my forearm side. ouch. ouch ouch. but if there was a clot, there would be a lump, right? i got arm supports for my little desk to try and aleviate some of my bodies discomfort when i sit up and lean on my bedside table. they help when i am not using my laptop mouse. i even got another virticle mouse. since my artheritis is gettng worse. not sure how i feel about this one yet. im tired.

part of me worries, sometimes if i will be driving, and lose time. i dont think i could handle that if it caused a accident and i hurt someone. im scared to drive....
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