Living with a muscle disease.

My daughter created a youtube channel for me and video taped 3 videos of me explaining and describing living with a muscle disease. One of them is 10 minutes long but the others are shorter. 

I made the videos because one of my friends, that has Central Core Disease like I do, told me that her husband felt she was just being lazy. He felt she just needed to try harder. He also felt she should be more positive. I made these videos specifically for her to show her husband that other people have affects from this disease that they cannot control. There are many sides to having a disease. I made this video a few years ago. Much has changed since. I have embraced the things that I CAN do and appreciated them far more! I have had much more loss since creating these videos. Much more atrophy and much less ability to do the things I was able to do in these videos. But I feel more blessed now in the fact that it is a sheer miracle that I can do what I can with the amount of weakness, atrophy, and pain that I have. It is my hope that the videos I made can help individuals that have chronic illness feel UNDERSTOOD AND VALIDATED. And also that their loved ones will see that they are not the only ones.
Living with Central Core Disease

The emotional component of Central Core Disease

Central core disease and limited mobility cleaning

16 thoughts on “Living with a muscle disease.

  1. All videos are very educational. I had never heard of this until I started reading about it on your blog. I remember reading one of your posts about people leaning on and touching your chair. Like wtf?
    And patting you on the head. Like double WTF?

    As I watched though I did think about what I’ve been taking for granted. It made me sad to hear some of your (so called) friends find it inconvenient to still be your friend. I wish I was down the road I’d love to go to lunch, visit and even help.

    Oh and Jesse, too cute. I love how she follows you where ever you go. What was she getting worked up and barking about at the end of the third video? I was thinking maybe she thought you were gonna put her in the dryer. Lol.


    • I was actually pat on the shoulder just today!!!
      Jess, whenever I was doing something on his level would “talk” and his nickname was rudy because he “roooo” noise whenever he got excited. Which was a lot. No happy birthday was sung without him singing along. Thank you so much for watching my videos! I was watching them earlier and I’ve lost so much since I made them I couldn’t believe it. Just the atrophy and even my hair! And my sweet jess has passed on. He was my sweet boy that was with me 24/7.
      I wish you were down the road darn it! But in spirit just to know you care is just awesome. Thank you

      Liked by 1 person

      • Oh man, I’m sorry I didn’t remember Jess was a male not female. I know someone who had a Jesse a long time ago, looked just like your dog only she was female.

        I love when dogs talk like that. It’s so funny. I remember your post about him passing though. It’s so sad when they pass.

        I just subbed to your channel and watched that other one there with your daughter teaching Jess to open the oven. That was great. Smart pooch. Patient trainer. 🙂

        I’m sorry that you have lost even more since you made those videos. You do not deserve to lose the use of your own body.

        Liked by 1 person

      • That’s ok. His best friend was a female jesse.
        Oh I forgot about that other video. You know she taught him that in in maybe an hour. He was so excited to do it. The only problem we ran into was that we would put the food in the oven and he would randomly just open it then sit there for his treat!!! So she had to teach him “pull” and “open” and that was the only time he could do it. We had to laugh the first time we tried it while making food and we were making cookies and he had to open that oven 5 times just randomly. Was so hard not to laugh bc we didnt want to encourage him. She taught him to do everything. He was so so smart. Very hard to lose.

        Liked by 1 person

  2. These are great. Your dog is adorable and we have the same sheet colors haha. I struggle with folding fitted sheets anyway 🙂 Very brave and helpful sharing.

    Liked by 1 person

    • 🙂 I think we should all l just stuff the darn sheets anyway. I mean who really looks in a linen closet. It’s not as if we welcome in our neighbors and friends and say, “hey come look at these nicely folded sheets” right?!
      Thanks for watching. My dog seemed to be very interested in our video making. But he followed me everywhere anyway.

      Liked by 1 person

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