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

Stem Cell Treatment #3

Hello and welcome back! Happy New Year! I can’t believe it’s already been a year since I started on my stem cell journey. Last month, I had my 3rd Stromal Vascular Fraction stem cell treatment. If you would like to know more about that treatment or how it became an option for me, please refer back to previous blogs where I explained  the first and second treatments. 

Always wear my lucky shoes!

In the blog about my second treatment, I mentioned I did a double procedure, meaning I had twice the amount of cells extracted, so that I could bank some cells, and not have to go through the actual procedure of removing the fat for the stem cells again. 

To say this time was a breeze would be a very accurate statement. I had my cells delivered to my doctor the day I went in. I got there, he prepared the IV, and it was as easy as a needle poke for the IV, and maybe 20 minutes tops to get my cells and then be on my way. 

When I was there my doctor told me how he had been showing some of the surgical fellows and other doctors my progress that I post on my social media. I love that I am able to be a “trail blazer” in what I think is going to help so many. That makes me feel like what I am doing is not only helping me and giving me hope, but it’s giving others hope too. I just hope it will become more widely available, and somehow be covered by insurance, as it is not that way now. 

I had gone 8 months since my second treatment, which we both agreed was too long. I had started declining and was feeling weak enough to use my scooter in the house, which isn’t something I’ve had to do very often. I plan to try and get a treatment every 4 months, and see how my body responds to that schedule. 

I’ve been extremely busy since the treatment with the holiday festivities, so I’m feeling quite exhausted, as anyone does I suppose. There have been a few days I’m not sure if my legs will carry me. I say this because I’m not sure the past few days have been a good judgment of how I’m responding to this most recent treatment because things haven’t been my normal everyday routine. 

I didn’t have any downtime with this treatment since there wasn’t a surgical procedure this time, so I was able to keep up with my exercise routine which was great. 

As I was leaving, my doctor and I were once again marveling about how we had met, and how all this came about. We both agree that it was nothing other than divine intervention. I’m so grateful for this opportunity, and glad I had the humble courage to try this treatment. I’m still looking forward to the day when there is a cure for Muscular Dystrophy, and plan to keep fighting to make that a reality. Until then, this is my plan as far as treatments go. It gives me enough of a boost to warrant continuing treatment, not to mention the improvement with my bone density. I can’t help but believe this treatment played a big part in that, as it’s never increased since I was 25 years old. It had only declined. I have had a lot of people, including my doctor, tell me that I just seem to move better. 

I look forward to testing this treatment with my next big challenge. Here’s to being hopeful for a strong 2022! 💚


Comments

Post a Comment

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...
13 comments
Read more

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...
Post a Comment
Read more

Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t.  “Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears.  Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the ...
9 comments
Read more