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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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A Meaningful Gamble-Stem Cell Treatment Updates

Happy New Year everyone! I'm excited and hopeful for 2021. 2020 had its challenges that is for sure. For me, lots of good things happened too. I think I had somewhat of an advantage going into something so uncertain. Living undiagnosed for 44 years, you learn to live with uncertainty. It's definitely a roller coaster living with any kind of uncertainty. Some days you feel ok, some days you have a lot of anxiety because of things that can't be figured out, and you don't know when it will be. I am so grateful that is one thing I have been able to check off my list since finally having a diagnosis. Its really freed up a lot of headspace for me. I feel like instead of treading water I'm now swimming. I'm able to move forward and that is such a good feeling.

Speaking of moving forward, I wanted to give an update on my stem cell treatment progress. I am about 3 1/2 weeks out now from my first treatment. While I certainly didn't wake up miraculously cured or anything, I've definitely noticed some small improvements. Going into this, I told my husband that even if the changes were small, and only I could feel them, then it would all be worth it, and worth considering continuing treatment. Two of the main things I have noticed are that it is easier for me to get up off of a chair or couch. I am able to do it in more of a smooth motion rather than twisting and contorting my body to be able to stand. I am also able to do it more quickly. The other thing I have kind of "tested" and compared is going up my front stairs into my home. I was able to go up much more quickly and with much less effort than I had been. Even if these were the only two improvements, it's enough to make me a believer of this treatment. 

With that being said, I am doing a lot on my part to kind of help the stem cell treatment along if you will. I have taken extra precautions to stay home and not get sick during this first few weeks. Of course COVID and winter makes this much easier to do. I also have continued to eat healthy and exercise on a regular basis. I feel like these things can only help the process. The other thing I have been doing is trying to stay as positive as possible. Putting my journey and progress from treatment out to the world has brought on some backlash from skeptics. Sometimes you have to go with your gut. You have to take chances if you can. I mean how is this really any different from any surgery I have ever had? My ankles and feet have been basically shredded through the years from different surgeries. Every single one of those scars I have was a gamble. There were no guarantees with any of that either. To me, this is no different. 

I will close in saying this. I have a lot of people following my stem cell journey on social media. People living with my same or a similar type of disability. I have made some things very clear from the start. This was not presented to me as a cure or any guarantee of improvement at all. I do not know if it will help you, and this is my own personal journey. Each case is different. You need to do your own research and come to your own conclusion regarding your or your child's health. I am certainly no expert, just someone willing to try something new, and share it with others. The good or bad. I am passionate about sharing my story to help others. I think that is God's plan for me. I think that is why I have lived the life I have. To help others. I have been so touched by parents who have reached out to me telling me they are so glad they have found my journey, so they can see there is hope for their child. They can overcome and lead meaningful fulfilled lives. I have also had a lot of women my same age, that have the same disability, reach out and thank me for sharing because it has given them the courage to share their journey in order to help others too. To me, that makes it all worthwhile, and the few negative comments or reactions I get seem nonexistent. Finally, I believe that if God chooses to heal me in my lifetime then all the glory to Him, and if he doesn't? Then all the glory to Him in that case too. He enables me to walk humbly courageous through this life, and I am grateful He chose me to share this particular journey. 

Comments

  1. You are so brave with everything you do. It's awesome to see your story is helping others have hope and courage as well.

    ReplyDelete
  2. Such an inspiration to others. Congratulations, your journey will continue to provide motivation to many.

    ReplyDelete

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