So, on Thursday, October 24, I endured a lumbar spinal puncture ordered by my specialty neurologist, who’s in the hunt for a diagnosis for my intermittent muscle spasms/joint jerks. For nearly four years, this disturbing condition has ruled my life to varying degrees. I’ve found a comfort level with a small crew of medical practitioners who care, but still I wish this plague would vanish. Poof! Begone!

The procedure didn’t hurt because I was sedated, but the attending doc’s words did: “The purpose of this procedure is to rule out Stiff Person’s Syndrome like Celine Dion has.” I didn’t have time to process it because he continued reciting the entire litany of things that could go wrong. Holy crap there was no time to halt the train – holy crap!

I’d never heard this potential diagnosis applied to my issue before and I was freaked, frightened beyond reason. Sadly, the communication mode is confined to online. MyChart is the only method I had to let the neurologist know of my concern. I posted messages several times and spent the weekend trying to tread water and not succumb to terror. I didn’t hear from the specialty neurologist or five days… and her only reassurance was that the test results on the 15 cc. of spinal fluid hadn’t yet been processed.

Being the News Caboose in my illness’s diagnosis ain’t great. The irony of this being the holiday of tricks and treats is not lost on me.

This reflects my family of origin life, always the last to know. Out of the loop and redacted as an invisible sibling? I lament being the ‘News Caboose’ – does it happen to you in your family dynamic, too?

Thank goodness for my local circle of support, my chosen sisters, and my Bible Study group. They are praying, beseeching the Lord to rid me of the condition – and the dreaded diagnosis. The Bunco Babes, too. And my terrific husband and adorable dog.

https://www.youtube.com/watch?v=0C58ttB2-Qg