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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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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 comfortable position. The last time, the liposuction part of the procedure to remove the fat to harvest the stem cells from was around the front side of my body. This time, since it was on my back it was really hard to stay comfortable, even sitting. I just took it totally easy for the first two days or so. After that, I would try to do a little more each day. Duties call, and things don't stop just because I had a "surgery".  I'm still a mom whose kids need me, so that pushes me along to get well. Below you can see there is bruising with this procedure. 

Probably around day 4 or 5 I felt like I had a little bit of a setback, and just felt really weak and exhausted. I was probably doing too much too soon which is typical for me. Our bodies have a way of picking us up and slamming us back to the ground when pushed too far. You would think I would have learned after all these years, but I haven't. I don't like to just sit still all day. I like to be productive, and feel like I've given each day my best. Some days though, my best is just getting up and surviving the little things that come at you during the day, and I'm working on accepting that is OK, and has no value on my self worth. Hard though for sure. I think we can get our value and self worth mixed up with measuring the busyness of our lives. Living with a disability, this is magnified. For me anyway, I often feel the need to "prove" myself. To earn my keep so to speak. I regularly physically push myself far past my limits, and take on things I shouldn't, so that I can feel accomplished. Like I said, this part of me could use some tweaking! 

So, day 6 post procedure, I got a short pool therapy session in. I went easy, and that was plenty. It felt good though to be able to freely move around in the water. I don't think it does anyone any good to not move if you are able. Getting up and moving your body can make a huge difference in how you feel. Plus, it's a gift if you can do that. I know people who aren't able to do that, so I try to respect the gift of movement that I've been given, and not waste it. I may be moving slow, but moving! 

Pool therapy, still bruised, but healing
Both sides look like this

I have had some of the tingling in both legs that I had after the first procedure, but not as much. One evening as I was getting ready to fall asleep, my right leg felt this "feathery light" feeling. It's hard to describe, but for a fleeting moment it felt like my leg was what I would think would feel "normal". I think with Muscular Dystrophy, our muscles must just feel heavy. I always try to think of how I can describe my condition to help others understand what it's like. I've often thought of telling them to attach heavy weights to their arms, legs, feet, hips, shoulders, and then go about your day never taking them off. Then, get up and repeat for 46 years....and counting.  For some reason, to me, describing what weak muscles feels like is hard. It just feels heavy, and at times suffocating. I say all of this because for those few seconds, my leg felt healed. I wish I could experience that feeling over my whole body just for a moment. I imagine it would feel quite wonderful. 

Today as I write this, I am feeling more energy, but not quite up to par. I've said throughout this whole journey I would keep it honest, and that this is just my personal experience that I've chosen to share in hopes that maybe it would help others decide if taking the chance to try this procedure is right for them. This should only be seen as one person's personal account of how SVF stem cell treatment has affected them, and only a tiny sliver of the research you should do if considering this treatment as an option. 

Also, this I've said this many times too, but it bears repeating that this is not a cure for muscular dystrophy. It was presented to me as a chance of something that could give some improvement, possibly slow the progression of the disease. No guarantees though on any of that. It's a risk for sure (meaning it may or may not work), and not a widely embraced procedure by some of the medical world at this point. That's ok, no doctor out there knows it all. They may tell you they do, but they for sure do not! I'm 46, and this is pretty much the first shot any doctor has every offered of any kind of help with low risk, so that's why I chose to walk humbly courageously into the world of SVF stem cell therapy. After much research, reading other's testimonials and prayer it felt like the right decision for me! I couldn't get past the feeling that God placed me in that doctor's office for just this reason even though it wasn't the reason I was there at all! I still have high hopes that in the weeks to come I will be able to share some victories as I did after the first round. Stay tuned!

The healing light, the healing has begun
I believe 





Comments

  1. You. Are. Amazing! We are so proud of you!👏🏽🤩🙌🏽

    ReplyDelete
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    1. P.S. This is from the Fisher Family Five❤️

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