Chiari in Charge.

This is from July 8th but I didn’t get around to publishing it til now.

I wanted to draw today. I have this shiny-new set of copic markers to which I’ve only acquainted myself. I brought all my supplies downstairs to start working, and I realized after sitting at the table deciding what to draw that I wasn’t going to be able to sit there any longer. I’m having a day where looking down is making the room spin. It’s really hard for me to spend time drawing anyway, I always get a really bad headache when I work on something, but today I couldn’t even start something.

I’m having more and more days where I can’t ‘start something’. I used to just get rebellious against the pain and power through it, but the pain is so bad that I can’t even get started. It’s not that I’m losing the ‘rebelliousness’, it’s just that the pain has reached a peak where it is impossible to power through anymore. If I were to just ignore it, it would progress into a ‘point of no return’ where none of my pain meds would help it, and I’d probably throw up.

It is against my nature to give up on something. It is leaving me incredibly frustrated. Technically I’m not giving up, I’m just unable, but it still feels the same. I feel like I don’t know what to do with myself, because the only things that don’t lead to a raging vomit headache are standing and walking, and I can’t do that all day long.

It’s not just pain either. It’s a pressure my head fills with that is hard to describe to someone without chiari. It makes my ears throb, and the back of my head pulse. It dulls my hearing and narrows my field of vision. It throbs and pulses even more when I turn my head. My teeth hurt. My head feels too ‘full’.

I’m not entirely sure as of yet why it has gotten so much worse, or what the exact cause of such symptoms might be. After researching and talking to other chiarians, I have a few theories.

My most recent MRI report from September 2012 states that there is no blockage of Cerebrospinal fluid. I don’t think that is entirely true. Perhaps at that moment there wasn’t, but I have a syrinx, which is evidence that at some point, fluid was trapped somewhere. Since that was almost a year ago, it is probably time for another MRI to look for progression. If I do get trapped CSF fluid sometimes, that would explain the pressure and throbbing, and the ‘full’ feeling.

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