Saturday, June 26, 2010


I am flattered and thankful that this blog remains the #1 ranked Chiari website on the Internet; not just of blogs, but of anything having to do with Chiari whatsoever. It has been a lot of work to keep writing and keep reliable, informative links for the public, in the midst of, oh, say, 20 surgeries and additional hospital stays, the daily SeizureMonster, raising two small kids, DH's legal battle for the last 21 months. (And did I mention the daily BS that is life with Ehlers-Danlos and the rest?)

My point being, I only have so many spoons a day (don't get it? find the link about spoons). I am a bit behind on updating my links, especially the ones from the medical journals. I do enjoy reading medical journals. I know for most patients they may as well be a foreign language, but my first few years of college were in a medical field, and those years were paid for by my full-time health-care position in a hospital. Yes, it was a lifetime ago it seems, and I did end up changing majors to work with children, but the body has always made sense to me so the journals are an easy read. (To quote Willy Wonka, "Strike that, reverse it." The body HUMAN makes sense to me, not my own body. My own body is an exception. I don't know WTH it has in for me or why.)

That said, right now I am fixing broken links--it happens. That is today's job. Over the next couple of days I will read the medical journals from the point at which I last stopped, and as always, will post any new findings in the world of Chiari Malformation (CM), Syringomyelia (SM), Ehlers-Danlos Syndrome (EDS), Tethered Cord (TC), Postural Orthostatic Tachycardia Syndrome (POTS), and Thoracic Outlet Syndrome (TOS). (Regular readers of the sidebars know when I update links I mark the new ones with an asterisk, and the ones previously marked as new become of normal status.)

Thank you to my medical readers for making this site what it is. Doctors still send patients my way to speak with, school districts from around the country request help to learn about these disorders to help their SpecEd/504/IEP teams, which as a teacher thrills me. Hundreds of hats have gone out to patients in need of them for their recovery from brain surgery; my volunteers from Crochetville and Ravelry are awesome. National and local tv networks, newspapers, and magazines have contacted me for information, done stories, profiles, interviews, etc. Anyone can do this. The more info we get out there, the better.

Patients, I provide these links for you to arm yourselves with knowledge. My email is provided if you need help or a neuro referral, or have questions. The blog, well that's just my journal b/c I can't physically write one. Patients understand that; we all need a place to scream, when we can't physically do it or our already-enlarged brain might just leak out our nose or ears...just kidding...sort of.

So stick with me while I overhaul & update the links, fellow brainiacs, and keep your fingers crossed that the 3 or so researchers we have out there are getting us closer to a cure. Ok I'm rambling, hurting, need meds before I get back to work. Sigh. As much as I may try to live in denial, this crap is still in full control of my life.

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