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Showing posts from January, 2019

About Me

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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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Acceptance

Acceptance, that is the word I am choosing to focus on this year. It's definitely a word I have wrestled with most of my life. What I have trouble with accepting is that my mind, which is not disabled as my body is, would like to do all these wonderful active things. Exercising, deep cleaning (yes, I'm kind of weird!), long walks in the woods, difficult hikes, organizing, cooking for hours and so on. I find it interesting that my body longs to do a lot of things that it may never do, unless there is a cure for my unlabeled disease. Not highly likely.  I struggle with accepting that this likely won't change, and that my disease paired with my aging body will make these things even more unlikely. I struggle with accepting the daily anger, frustration and heart wrenching sadness that this reality brings about. I struggle with feelings that maybe I'm just not pushing myself hard enough. Maybe I should be more tough, and more adventurous. I struggle with the thought that o

Welcome!

Welcome to Humbly Courageous! To start, I guess I should share a little about me and what makes me who I am, and what has driven me to want to start this blog. I am 44 years old, and I was born with a neuromuscular disease that is still not identified, although recently some exciting progress has been made through genetic testing in the direction of a diagnosis. I am a married mother of two active teen boys who keep me going. I struggle with weak muscles all over my body that make it hard to get around and do everyday normal tasks. However, most days, I try not to let that stop me and I keep on keeping on in my own unique style. I try to add a dash of humor to my situation which can sometimes ease the sting of my reality. The reality is that there are many things in life that I would like to do and accomplish, but am physically not able to do. My hope is to shine a light on the abilities that I do have, and the way I go about getting things done as a disabled mother and wife of a ver