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Showing posts from December, 2015

Bed with a view

It’s been no secret that my health has been declining this past year and we’re not 100% sure why. There were more days in bed, days where I skipped showers, weeks where I didn’t wash my hair; times mum had to help me get changed. And while my physical body was failing me, my mental state was taking a hard hit. A lot of people turned to us and put it down to depression. “She just needs to get out of bed” “If only she stopped diving the headaches would stop” But we knew there was something else going on beyond chiari and my brain hanging down too low. Brain surgery had helped for a short while, and then I was on a cocktail of medications for that. But I was still in pain. So with the input of my neurologist we saw an immunologist and what seemed like half my blood was drawn for tests to be ran. And the result was an anti-ku antibody. If you’ve been reading for a while you’ll know about this guy and how he affects my joints. How it makes it hard for me to get out of bed because most