Welcome back to Humbly Courageous! If you are new, I’m glad you stopped by! I strive to make this a space for learning about what it’s like living life with a disability, as well as to connnect with others on a level that I always needed in my life. I’ve been overwhelmed by the response to my recent post “Dear Muscular Dystrophy”. Sometimes things in life go exactly as you’d like them to, and so far this has been one of those things. This piece still has places I want it to go too! Writing this piece was such a huge release of emotion for me, and also a release of bound up words that I’ve been trying to unscramble and make sense of for a very long time. I’m going to share a stem cell update in this post, but first I wanted to share a few things people have said regarding that post. Their words moved me as much as my words moved them. What a beautiful connection!
You can read “Dear Muscular Dystrophy” here ⬇️
https://humblycourageous.blogspot.com/2023/06/dear-muscular-dystrophy.html?m=1
Here are a just a few comments I got that really touched me.
“She captures this in a way that everyone with Muscular Dystrophy can understand. SPOT on. Beautiful words…all in the right order.”
“Thank you so much for your raw and honest story of life with MD. This takes unbelievable courage to put this out there publicly. Thanks for helping to spread awareness.”
“Thank you so much for sharing. You are spot on about how many of us feel living with a Muscular Dystrophy disease. Blessings to you.”
“I loved your letter to MD. So beautifully written and spoke to truths so many of us feel.”
“Oh this made me weep 🤍🤍 I’ve never seen my experience written down, thank you.”
“Powerful!”
Like I said, their word’s equally blessed me! What a difference we can make when we share our stories with each other. Never underestimate that! I had lunch with a longtime dear friend this week, who I don’t get to see too often. She shared with me that she loves my blog and what I’m doing. She asked me if I’ve always been such a good writer or even interested in writing before this. I told her not really until I started my blog. She said, “I think that it’s that you are sharing from your heart. It comes across as so genuine, and that really matters to your readers.” I smiled said “thank you”, and we both laughed because we know I’m still working on gracefully accepting a compliment. I’m getting better!
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| Treatment #7! |
Normally, I would dedicate an entire blog post to my stem cell treatment updates, but there isn’t a whole lot to say that I haven’t already said in my previous posts I’ve written on the topic. I got my second double treatment a week ago and today I’m feeling great! It usually takes me about a week to adjust, as my body is working hard to take on the new stem cells. Right now I’m in the sweet spot and I’m going to enjoy the heck out of it! One new thing I’ve noticed this time is that I feel “lighter” on my feet. For my followers who are still ambulatory with MD you probably understand what I mean. With Muscular Dystrophy and weak muscles, walking is so labored and broken up or not smooth and heavy feeling. I’ve always thought if I wanted people in my life to have a glimpse of what MD feels like I would strap 10 lb weights all over their body and tell them to live their life as they would normally, not taking them off for one second! So, with that visual, it kind of feels like maybe 1-2 lbs have been shed from those weights. It’s intermittent though, and the time I notice it most is first thing in the morning.
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| Dr J. says I’m his hero, he’s definitely one of mine! |
I do think the treatments are helping me to stay stable and probably slightly improved. My husband shared with me that he thinks they have helped me tremendously. He said he was scared at times that I may die before receiving these treatments. That I would go to sleep and not wake up because I was in a very low place strength wise when I started these treatments, and was I was having some really terrible days. How scary that must have been for him! So yeah, looking back I can see they are certainly helping. They aren’t curing me, but that was never the goal with these. The plan is to continue them every four months or so for now.
Today, I started back with my workouts after a week off. I missed them and was anxious to get back in the water where I feel the freedom I dream of having on land someday.
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| My happy place |
Sharing my story does take humble courage, as I never know if I will have people who will say unkind things, but those few people could never outshine those who my story is helping or could help. Don’t let a few negative comments stop you from living out your life’s purpose, which likely includes helping others. Be the calm during someone’s storm. That’s what life is all about. 💚
Noce post. Keep writing. Nest of Luck !!!
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