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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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Making Lemonade

Hello! Welcome back! I’m sure most of you have heard the saying, when life gives you lemons….make lemonade. Kind of cheesy, but so true! 

The thing about this saying is, it isn’t always so easy right? I feel like when I get disappointing news, I am one of those people that immediately feels defeated. I look at things in the worst possible light….I think, here we go again. I do that for about an hour or two. And THEN….. I get busy.

I start brainstorming ideas on how I’m going to continue to make things work for me, and come up with ways to either temporarily or permanently adapt. 

After my recent fall, I started having some heart palpitations. This isn’t totally new to me, but they came back this time pretty strong. I’m not denying that some of it could be caused by anxiety. I try to do things to help with anxiety, but it’s a constant battle. 

Painting helps my anxiety 

After a fall, I always get really scared to walk. On a normal day I’m almost always thinking about and calculating every step I take as I’ve mentioned before. It’s truly mentally taxing. After a fall, it’s even more so. I’m thinking about the steps I’m going to take before I even take them! Deciding if that trip to the bathroom is really worth it yet. It’s can be a form of PTSD when you live with a lifelong disability, and all that involves. Flashes of past traumatic falls can be haunting. I break into a cold sweat just typing about falling. It paralyzes me with fear at times when I am walking. Your mind is in a constant state of planning, safely executing, preparing for the unknowns that you don’t see coming etc. I could go on and on about it. Not to make you feel sorry for me, but to help you understand. It’s different. It just is. To me it’s all consuming, and never goes away. You learn to live with it. 

So back to making lemonade….I have to wear this heart monitor for 14 days to try and figure these palpitations out. I know, not really that big of a deal in the long run, except that I can’t submerge it in water! There goes my pool therapy that helps me so much for the next two weeks. So today when I was told that, I went to the worst place in my mind. If I can’t do the pool therapy several times a week, my legs will get weaker and then my risk of falling increases, and I become even more terrified to walk. A vicious cycle in my mind…. if I allow it to be. 

OR…..I can lift some light weights, sit on the step in the pool, put some ankle weights on and get a workout in that way, chair yoga, hills (maybe a lofty goal haha), ride my bike, learn something new like boxing etc. 



I think it’s just human nature when we hear disappointing news to feel defeated. It’s what you do after that initial shock, that sting of disappointment and fear when you get to choose how to handle it. It’s so easy to stay feeling defeated and sometimes just feels like the thing to do. It won’t get you anywhere though. I speak from lots of experience. I used to dwell in the pit of self pity. I was a regular. 

Staying out of the self pity pit takes humble courage. Most everyone I know has a reason to go there, and also has a choice to stay or get out. I say, get out, and fight like hell not to go back in. It’s a waste of a life living in that pit. I, for one, am beyond grateful to have made my way out. My faith keeps me going, my gratitude makes me strong. So, when life gives you lemons, make the lemonade even if you don’t feel like it! You’ll be glad you did. 





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