So...little over one month till brain surgery. I thought it would be good to shoot out thoughts I have for the day & also have Silas, my forever soul mate & caregiver, also share his thoughts.
Having the first symptoms ready become more evident in 2005, to the rocky road of today, had been a life changing turbulent experience.
Now, a progressive, and for me painful, neurological disorder has touched every aspect of my life. Dealing with what it "dishes out"has been both hell and enlightening.
I have learned healthy ways to cope, learned that some life learned behaviors had to be altered (like being the crazy multi tasker, do it all),& that some things I never thought would happen in my life time have come my way. Some amazing things, like learning to rely on good people, giving my heart completely to Silas & trusting him, not to mention believing him on my lowest days that I am still amazing & beautiful in his eyes.
Some unforseen things, painful in a different way, of people I called friends thinking this wasn't real or worse, losing them because they had no patience for dystonia.
So many things, from changes to my body & abilities, redefining who I am,& learning valuable life lessons that I may never had encountered without this drastic life change.
Sometimes I may blog about these obstacles & how I learned to deal with them our learn to let them go.
Sometimes I may just check in on my thoughts about the surgery & what is swimming in my head.
And, perhaps I may just hit topics on the things I have learned, like how to fight medical claims or apply for SSDI.
But first, I think I should take a baby step and see if I can even post using my phone right?
Hope this moment finds
Raising DYSTONIA awareness, ONE person@a time!