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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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Stem Cell Treatment #5

Hello and welcome back to Humbly Courageous, or if you are new here welcome. My hope is that you will gain some insight on what it’s like not only physically, but emotionally as well living with a lifelong disability. There are happy stories, sad stories, stories of triumphs and stories of defeat. I do my best to tell my story from a place of vulnerability and hope for my future, as well as the hope that it may help someone else to not feel so alone in their journey. 


In May I received my 4th SVF stem cell treatment. If you are looking for more information on my stem cell journey, I would suggest you start at the beginning, which you can find in a previous blog post titled "An Unexpected Opportunity" linked below. Now that my cells are banked, it’s just a matter of scheduling their delivery to my doctor, who gives me my infusion. Much easier than the initial process when they were retrieved. 

https://humblycourageous.blogspot.com/2020/12/an-unexpected-opportunity.html?m=1

I didn’t set myself up for success after treatment #4, and so I would have to honestly say I didn’t notice any benefit from this last treatment. I got the stem cells and then went straight into several weeks of just nonstop life with graduation for my oldest and the beginning of summer. I had no down time to rest and allow my body to properly be in a good place for the cells to thrive. I was exhausted going into the treatment and was even more exhausted in the weeks to follow. I couldn’t catch my breath. I also didn’t take a break from my several times a week pool workouts. 

From what I understand, these stem cells are very delicate and there are things you can do to better set yourself up for success. I try to eat well on a regular basis, so I feel like I do a good job with that. What I need to balance more in my life is not overdoing it on a daily basis. I need to learn to let some things go that I spend a lot of time and energy on, not basing my self worth on how much I can get done in a day. However, we are all just a work in progress right? I tend to feel guilty anytime I rest my body. I know a lot of those living with disabilities, and I am sure some who don't, also struggle with these feelings of guilt when we are giving ourselves a break! Living with a physical disability (in my case Muscular Dystrophy, where I am still ambulatory a lot of the time), the body requires more “down time”, or should I say it demands it. If I don’t respect that, I am likely going to pay either with an injury from falling because I'm so tired, or with pain for days after because I've pushed my muscles too hard. The guilt I feel as a wife and mother who needs extra downtime can be all consuming. I’m working on how I talk to myself when I need these breaks. Trying to be less harsh with how I think surrounding that. Again, still working at it. 



A few days ago I received my 5th stem cell treatment. I’m really hoping I’ve set myself up for a more successful reception of my cells. I have more downtime scheduled, and am being careful to try and not overextend myself this time. I’m really hoping to see the progress I had seen with previous treatments. I will also link previous posts where I talk about the treatment progress. There were some gains I think, even if subtle. When living with a progressive muscle disease that’s super exciting. Even to not feel like I’m going the wrong way, I’ll take it. Lately, I have been going the wrong way, feeling weaker, less steady and my workouts haven’t been as productive. Also, just to reiterate, this treatment is in no way a cure. It's just something I'm trying while buying time waiting for an approved treatment or a cure for Bethlem Myopathy. One thing I know, is that I continue to humbly courageously keep fighting. I’m not giving up, not even close. 💚

https://humblycourageous.blogspot.com/2021/04/recovery-week-1-svf-stem-cell-treatment.html?m=1

https://humblycourageous.blogspot.com/2022/01/stem-cell-treatment-3.html?m=1

https://humblycourageous.blogspot.com/2022/05/hope-infusion-4.html?m=1

Comments

  1. AnonymousOctober 7, 2022 at 4:33 PM

    You are too much like your mom. Never knowing when to stop ❤️❤️❤️

    ReplyDelete

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