Me am still surviving. Me really just wants say Cheetos is everything. Him has show me unconditional love that not was thinks was possible. He’s now see some of mine most bad “behaviors” and has take care of mine body needs more than Grr and strangely is still like in mine 1st post of them- Cheetos is still thinks am not a burden and is focus on helping me, and Grr becomes more um stressed and is more focused on fixing me.
So me got new doctor because old doctor try has me put inpatient psych unit wen us tell her Me was has bad pain. The hospital agreed me not needed but still that was not nice. And her has never try fix mine meds to liquid for mine feeding tube.
And me was in hospital a time. Me got a new feeding tube and formula and more seizures meds and sleep meds. Mine tummy is the most has be in mine life! And not be has big body seizures after leave. Yay! Is kinda nice sleeping but nightmares. The bad part was being in the hospital so long made mine ptsd get really bad with living flashbacks and me had more of old behaviors of blackouts and scratching, headbanging, fighting- only not so bad because quadriplegic so not that hard to keep me safe, just hold down mine good wrist. But even that’s scary because me remember when it took a lot of people to hold me down and now if someone try hurt me it’s very easy. But Cheetos said will keep me safe. Me hopes with the new meds will start get better. There’s still no idea what is wrong with me. And me had be slow still get more bad. The only thing with the formula is it’s a special kind and is not made with sugar so wen me had a bit of chocolate that melts in mouth me start feel very sick and weird.
Me not has pt/OT because the doctor say not want to because not knowing mine diagnosis so not knowing what will helps or hurt. Us did get a special headrest for mine chair. Me has mostly be bed bound a long time so we also got me a mount for the eyegaze device that can be used laying in bed.
Is super hard watch mine body and brain get bad, but Cheetos and Kitty lets me know that me am still a person and still me and loved not just a burden. Oh us is get me a new pa because the old was not very good so me has be super lucky and stay with Cheetos for some time until new person start.