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Showing posts from April, 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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Boston Marathon Conclusion

Hello and welcome back to another week! If you are new, I’m glad you stopped by! Last week I started you out on my Boston Marathon journey as a duo bike rider, which is how I participated. So, this is a continuation of that journey and eventually a wrap up of the entire day.  As we started to find our rhythm and settle into the 26.2 mile journey to the finish, I made sure I had my things in order for a smooth ride. The weather was great for Jamie about 50 degrees and overcast, with a light rain here and there. Honestly, not too bad for me either. I was definitely layered up as I said, but comfortable.  Somewhere at about 2-3 miles in, the elite men came thundering by us. My boys were anxiously awaiting the video that I would take. As runners, they thought this was a pretty cool thing for us to be able to see. And it was. I won’t elaborate, but let’s just say the video that was supposed to be, sadly was not. But…WOW it was so incredible to see that type of athleticism so close! In just

Boston Marathon Part 1

Hello! Welcome back, or if it’s your first time here, thanks for stopping by! So, I did a little thing on Monday. I participated in the 127th Boston Marathon! This marathon marked my 4th. My husband Jamie, aka my legs for the race, and the other part of my team, was of course by my side. Without him, I wouldn’t be racing! We use a special running bike built just for me, called a duo bike. Our first race was in 2019 at the Chicago Marathon, and we have since also completed the New York City Marathon and the Indianapolis Monumental Marathon. I had been to Boston two times before this marathon and watched Jamie run. Being a spectator was a lot of fun, and I love the city. The energy there is amazing! I really never dreamt I’d be a part of it one day. The first time I ever saw or sat in a duo bike was at the expo before his 2019 Boston marathon. It was really cool to be able to sit in one and feel someone pushing me in it.  My first time seeing a duo bike We’ve come a long way since that d

A Quick Trip

Hi, welcome! I’m glad you stopped by! I just wanted to run in to see if I could find a pair of tennis shoes. Just a quick trip in and out and I’d be on my way. This was over 20 years ago when I didn’t have to give as much thought to a quick trip into a store. I didn’t have to worry about if there was a curb to get up onto, or if I may just sporadically lose my balance. Don’t get me wrong, walking was difficult, but not nearly as much so as it is today. It happened quickly after I arrived. Someone left a shoebox on the ground and I didn’t see it. I tripped and fell. Ugh. I managed to pull myself up from the ground using the shelves in the store. I had just barely pulled myself up and started towards the door to get the heck out of there when I heard, “oh my gosh are you ok?” Yes, I assured the gentleman working at the store, “I am fine” followed by a smile which was my go to response when I wanted to be swallowed up by the ground out of embarrassment. He persisted, “you don’t look fine,

On the Other Side

Hello and welcome, I’m so glad you stopped by! We’ve all experienced difficult seasons in our lives. Seasons when we are living in the moment, we think, how am I ever going to get through this? It’s unbearable. There is just no way! Then somehow, we get to the other side of that difficult season and look back on it, sometimes in awe that we were able to survive. It boggles the mind. For those of you who are new around here, I live with a rare form of Muscular Dystrophy that took 44 years to finally diagnose. I have always been affected and suffered from muscle weakness and difficulty walking since I first started walking, but only have had a name for my disability for about 4 years now. During those 44 years I was consumed, as anyone would be, with finding answers for what caused my weakness and physical difficulties.  Getting to the other side of that search, I have had some time to reflect on that time in my life of limbo and so much uncertainty. At times the pain and frustration of