Still in the hospital with plans about planning something. Something will happen but I hope Gods plans for me at least are close to what I want soon (to stay in Nebraska)......just keep going, praying, fighting this. When I got here Wednesday, the hospitalist was quick to jump to conversion disorder, Im too young to be this sick and my symptoms dont make sense. Thank God that didnt stick once the specialists came in and realized how sick I am. Different hospitalist after that. The new hospitalist is a great dr, very objective. The specialists arent agreeing on dx, theyve never seen AE before and dont understand it (lack of awareness, rare disease), and unless something changes their mind theyre going to transfer me to UNMC, if theyll accept me (which they wont), or back to Johns Hopkins. I dont want to be sick anymore. I really dont like the idea of being flown to Maryland in an air ambulance (Id like to never ever see one). Only MD Drs and my Dr in Grand Island whos been guided (and thank God hes willing to continue learning) by my doctors on the East Coast know what to do. Grand Islands hospital unfortunately isnt equipped. Please pray these guys in Kearney understand and feel comfortable treating or someone buys SFMC some equipment. I dislike being in the hospital, especially so far from home. Its depressing. I dont like being depressed. I laugh and talk through everything but Im just ready to crumble. The kids get out of school soon. I miss them. I miss being a mom. Im still mom but John is super dad who helps with everything and Lynelle (Ojitos) is doing most of everything now. I get jealous when they are like a super humans and clean the kitchen AND fold all the laundry in like an hour or two....depends on if Tyler is wobbling around. I folded two towels and tapped out because my body wont work. I want to do laundry, change poopy diapers, put Tyler in a head lock just to wipe his nose, shuttle kids to friends houses, dance, wrestling, the mall, the park, be able to vacuum, dust, and cook again. I want to be able to remember. It is the little things that matter. Cant get ahold of my MD doctors until Monday now but they finally agreed to disagree and ordered pain meds. Im caving and gonna get some morphine since I cant have more toradol. Fingers crossed for no/minimal side effects. Prayers are appreciated. Pray for awareness so I, and others with this illness, can be treated closer to home and be okay. My friends with #AutoimmuneEncephalitis, #PANDAS, #PANS, #EhlersDanlosSyndrome, #Chiari keep fighting and spreading awareness.
Posted on: Sat, 17 May 2014 01:28:17 +0000
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