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Showing posts from January, 2023

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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After All These Years

Hi, welcome to Humbly Courageous! This is an open and honest account of my perspective as a woman who has lived life with a disability. I wonder how many times I’ve been to the doctor over my 48 years for my muscular dystrophy? Hundreds, definitely, thousands, likely. I should have these visits down. I should have a confident voice as I’m facing these doctors. Many who I’ve known for years. But, the truth is, I’m not great at that. I’m a quiet, soft spoken person by nature. That is not to say that I don’t feel fired up on the inside. I’m really good about creating strong conversations in my head, and then when the time comes to deliver my side of that conversation, I chicken out, for lack of a better way to describe it.  Patiently waiting…. This week I had an appointment with my neurologist who I’ve been seeing for about 16 years or so. If you’ve seen a neurologist, you may agree, they are generally very intelligent, pretty subdued people. That’s not to say they ALL are, but in the MAN

Just Like Me

Hello and welcome to another week at Humbly Courageous! It's a really strange feeling when you are a child, and you are surrounded by others who aren't really like you. Or at least that is how it felt a lot of the time. As an adult, I know that of course I had things in common with my friends that were outside of my disability. Lots of things in common. However, when I would go out in public, or turn on the t.v., I didn't see anyone like me. I longed to find that one person who could relate to me. It was a deep void, that I didn't fully understand myself, let alone have the words to explain it to anyone in my life. Combined with being in limbo searching for a diagnosis for 44 years, it was in many ways a confusing and internally lonely time in my life.  Social media, being the beast that it is, meaning it can be very harmful in many ways, also has one really great thing going for it. It allows those of us with disabilities to connect in an instant with someone who is li

The Challenge Before the Challenge

Hello and welcome! I have talked a lot about challenging myself on the big hill since I started my stem cell therapy. It’s become something I “like” to do that gives me a renewed sense of hope when I successfully reach the top. The thing with the big hill is that it’s quite a little hike for me to even get to the start of the hill. The challenge before the challenge. It’s probably a 5-6 min walk to get there. Mostly flat ground, but still. It’s not easy. My legs are already tired before the challenge even begins.  The path to the big hill Growing up, like I’ve mentioned before, I had to have several surgeries to deal with my ankle contractures and instability, which are common things with Bethlem Myopathy. As I got older, I started to realize that the surgery was just the challenge before the big challenge. After, was when the pain came along with months of rehab, learning to try to walk again with the new function of my feet, or ankles. I can't even count how many times I have had

Words To Live By?

Hello! Welcome to 2023 with Humbly Courageous. I hope your year is starting off well. I feel like whenever we are heading into the new year I see those word search thingys where it says something like, the first 3 words you see will define your year, or whatever. I don’t really believe a word search defines my life, but I have to admit I always look through them just out of curiosity. This year was no different, and the two times I did it (on separate days) my words were gratitude, connection and breakthrough. Ok, I can work with that! Haha! That’s just it though, there is no magic potion and boom you’ve achieved all these things in your life. Those words are all great, and certainly things I’m interested in working towards in my life, but I know it takes work to achieve things like that. So, I thought, if anything it’s a good starting place. So, let’s break it down and see how I strive to incorporate these words into my life, and maybe this could help you too.  Grateful to have succes