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I occasionally check google to see how people are finding my web site. Today I was visited by someone who found this blog by googling "dystonia blue baby". Anyone who even has to type those words deserves a hug.

For those of you who are like "dys-what?".. dystonia is not a learning disorder. dystonia is a neurologic movement disorder characterized by sustained muscle contractions, resulting in repetitive, involuntary, twisting or writhing movements and unusual postures or positioning.

As you may remember, I'm now off of the meds that I had been on for anxiety and had been on for years to treat my own dystonia. My dystonia is focal and it affects my facial muscles and tongue. I have been putting off calling my neurologist for a check-up.. I haven't been taking anything specifically for the dystonia since well before Ben (all of those meds are no-nos while pregnant or trying to get pregnant).. needless to say, it has been a bit of a shock to try to "get used to" the pain that is caused by the muscle spasms. I don't remember it hurting this much before.. maybe it didn't.. or maybe i had built up a tolerance that i wasn't aware of. who knows.

I do know that dystonia is miserable.. i used to "joke" that i never got anything that killed me.. just things that made me miserable.. between the dystonia and the colitis.. i'm screwed. i don't joke about that anymore.

lord.. I probably missed my window with the "dystonia blue baby" visitor.. but if you happen to check back to this site.. I'm thinking about you and while I can't really offer any specific words of wisdom, I completely "get" how worrisome it would be to have this on your mind. I hope to god that whatever is misfiring in my brain is not something that could get passed on to my son.


  1. donna said...
    hey jen... call your neurologist.. there might be something besides meds to help! love
    donna said...
    also --if wishes were horses--(beggers would ride) is the rest of the saying. g-ma dibiase used to say to us kids all the time when we would wish for--not having to do the dishes-clean the bathroom --wish for everything under the sun!! it was to let us know that our wishes could not possibly come true because--if wishes were horses-beggers would ride and they didn't--it was to get us to stop wishing-- it never worked- we kept wishing-- love

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