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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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Hope Infusion #8

Hello and welcome back to another week at Humbly Courageous! I hope you are enjoying the fall season wherever you are. Here, the leaves are changing to many beautiful colors and many days the sky is the most brilliant blue. I absolutely am energized by fall! It’s like a painting that has come to life. What a mood boost it is (as long as I push away those feelings that winter is just around the bend, ha!). 

Last week, I had my 8th SVF stem cell treatment. This time I chose to only do a single treatment. The last couple have been double treatments, but this time I thought I would just try the one treatment again to mix things up a bit. I have been dealing with some new physical symptoms that seem unrelated to my Muscular Dystrophy, so I didn't want to completely overwhelm my body. 


As always, when I have a treatment, I like to share a blog post about how things have been in between treatments. To be honest, I haven't noticed any huge changes. It's also hard to say at this time when I have some new things that have popped up. When I started on this stem cell journey I was quick to point out that I had no idea if it would be successful for me or not, and that I was not expecting a cure for my MD from this treatment. I was hopeful for any small improvement because after all, that would be a step up from my current options for treatment of my MD, which was absolutely nothing! 

If I look back to where I was when I first started the treatment I would say there is no question that there have been improvements. I was in a bad, hopeless place physically, on a rapid decline. Most days I have more endurance to make it through my day, and do feel like I have a better "quality" of life. I am anxious to have my next bone scan coming up in December because at my last scan I had shown remarkable improvement in my severe osteoporosis since starting the treatment. So, it's likely that some of the benefits of the treatment aren't visible to the naked eye. Getting that news that my bones had become stronger was honestly a miracle. Since I was 25 years old, my bones had only been getting weaker, and each visit with my bone doctor the results got more and more grim. I am very optimistic that they have continued to improve, and will be sure to share that update when I have it! 

Although I did recently receive my first custom manual wheelchair, I don't see that as a setback. I see it as a way to improve my arm strength and to preserve and even out my energy throughout my day. Some days I use it more than others. While an ambulatory wheelchair user can be a strange concept for some people to wrap their minds around, it makes perfect sense to me. So far, it is working out really well and I’m grateful to have it. 

I continue to exercise several days a week in the water, and have also added some light strength training to my routine, as well as regular stretching of my muscles. Stretching should definitely not be overlooked. In addition to my normal exercise, I have a few regular therapies I do. Chiropractic treatment, craniosacral therapy and rolfing (structural integration) are all on a regular rotation. I can go more into depth about these additional treatments and how they benefit me in a future blog post. 

Managing a chronic disease is not only time consuming and daunting, but also incredibly expensive. I am sure there are many more therapies or things that I could try out to help maintain my strength, but there is only so much time and funds! I am always open to trying new things because you never know what may be able to help. While doctors are certainly great resources, there are also many other professionals who offer alternative types of therapies. Normally, those are not covered by insurance, unfortunately. Advocating for yourself, and researching things on your own are important in this journey for sure. It takes humble courage to take a chance on something not knowing what the outcome may be, but as the saying goes, "you will never know until you try". Speaking of trying, I feel like the time is coming for another "big hill" challenge. Stay tuned! 💚

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