Skip to main content

About Me

My photo
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.

Followers

Your Story MATTERS

Hello and welcome back! Do you ever struggle with that inner voice, the one that tells you that you aren't good enough, or you’re not keeping up, or everyone else is so far ahead of you and achieving all these things, and you will never get there? Of course you probably do. I think we all struggle with that. We are human. 

This is the 38th blog post I have written. I go through these periods as I have mentioned before of why am I even doing this? What in the world does a 47 year old woman living with Muscular Dystrophy have to offer or say that even MATTERS??!! Turns out, a lot I guess. 

Every time I think of hanging this up, whatever this even is.....I get a message, I kid you not every time, from someone telling me that because of what I am doing it's helping them. So what right? One person, you are doing all this work for one person? Maybe some weeks I am, and other blogs like last week's blog, really got a lot of traction. In the end, it really doesn't matter if it's 1 or 1,000. It's a living human that you have helped by opening up. 

Also, what good is it if you have the ability to help others and you just sit on it keeping it to yourself? It's a waste. I get it, not everyone wants to share, and I didn't always either. Has to be the right time for you. People often say to me, "you are so brave to share your story so vulnerably". I have to admit when they say that it causes a little bit of an internal panic, and I start with the negative self talk. Thinking, what do they mean by that? Am I oversharing? Probably sometimes, but that's ok. What they really mean is that it takes big courage to put yourself, good and bad, out there. But at the same time it keeps me moving closer to the goal of accomplishing the plan that was created for me. 

some of my artwork 

You never know who your story is going to resonate with. Maybe they are barely hanging on, and your story helps them in some way. Or maybe some people just like seeing some good news every once in awhile. Life is definitely not perfect for anyone, but we all have a unique story to tell. There is a lot more to a person than just the cover of their book. I, for one, enjoy seeing other’s true stories. It gives me hope. People helping people. I’ve said it before, it does take humble courage to be vulnerable, but to me it’s worth it.  

Comments

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operati...

Recovery Week 1, SVF Stem Cell Treatment #2

Welcome back! Well, I survived week one post double SVF stem cell procedure, and also got word that the half of my cells I am banking arrived safely at the cell bank. That was a relief! One thing is for sure, there was a definite difference in the single procedure recovery vs. the double procedure recovery. There has been a lot more pain this time. I am still very sore from the procedure. The bruising is getting better, but definitely still there. Also, the area is still swollen and very tender to touch. Each day I have just taken it day by day. I have had some good days, combined with some really painful days. The pain is from the actual procedure, but also I have had some achiness all over that has been pretty persistent and miserable this time, as well as feeling very fatigued. However, I know I am only about a week post procedure, and all of this is to be expected. Allowing your body to heal is important to the process! The first couple of days, I just had a hard time finding a com...

Community Chat-Sarah

Hello and welcome to a new week at Humbly Courageous!  This week I am so excited to share a new community chat with you.  Sarah and I have something very unique in common. We both live with the rare neuromuscular disease, Bethlem Myopathy. It has been incredible to connect with Sarah over the last few years, and witness her journey to motherhood. Like me, Sarah has spent much of her life searching for answers and trying to make sense of this disease.  We have many similarities, and “meeting” someone who truly understands just how difficult this journey can be, is truly life altering. We also both recognize how we can find beauty in the hard and amongst the pain. Our faith is strong, and we both agree that we wouldn’t be here today without our relationship with God. He is our strength on our weakest days. I was so honored to be someone she could come to with questions regarding her pregnancy and becoming a mother. That is something I longed for when I was entering into mot...