You Know You Have CMT When…

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I recently posted a CMT 101 type post to tell you all about my disability (disease, disorder, whatever you want to call it) called “What is CMT.”  I wrote that post primarily because I wanted to write this one, but I felt you guys deserved an explanation of CMT first.

I am the member of several CMT groups online, and one day someone posted simply saying “You know you have CMT when…” and waited for the comments.  Reading the thread of that post brought me so much joy. It was so refreshing for me to read things that are common in my life (and my family) happening to other people.

Now, before you think that’s mean of me to say, remember this: People with CMT live with it every single day.  We learn how to live with what it does to our bodies, and many of us have accepted this as reality.  So many people on the thread commented about how great it is to know there are others like them.  If you know these everyday “mishaps” won’t change, isn’t it nice to know that you aren’t alone?

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What is CMT?

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As some of you may or may not know, I have a physical disability called CMT.  It stands for Charcot Marie Tooth disease, and contrary to many people’s first impressions of the name, it has absolutely nothing to do with my teeth.

As my blog following begins to grow, I’ve been feeling compelled to try and do more with it.  While I’ve been searching for ways to expand my content, I feel that one of the subject matters I need to touch on more often is life with CMT.  I know that CMT is more common than people realize, and the general awareness of it is rather small compared to other diseases of the same severity.  I’m sitting here, a blogger that is getting hits every day, talking about all sorts of things, and yet, I’ve really only touched on CMT once, and it was in my personal story of life with CMT.  It’s time I try to raise just a little bit more awareness.  For starters, I want everyone to know a little bit more about what CMT is. Don’t worry, I won’t go all “in-depth research paper” on you.  I just want to share a little bit of information. Read more

Diva and the Dystrophy

 

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The definition of “Dystrophy” according to our dictionary friends at dictionary.com

Noun
Any number of disorders characterized by weakening, degeneration or abnormal development of muscle.
For those of you that don’t know, that would be me.  Okay, I myself am not a dystrophy, but I HAVE one.  I am the proud owner of a body that since day one has been affected by Muscular Dystrophy.  CMT type 2B to be exact.  CMT stands for Charcot-Marie-Tooth Disease.  No, it has nothing to do with dentistry.  CMT is named for the three doctors that were able to first describe it back in 1886: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.

 

 

If you have wandered over to my “About Me” section, you might have stumbled upon the story I wrote about my life with Muscular Dystrophy.  I originally just wanted to get that knowledge about me and my differently-abled body out there so when readers came across photos that looked a bit odd or comments about things that came across a little strange, there was an explanation.  Since then I decided that I want to take talking about my life with CMT (Muscular Dystrophy.. those two terms will be interchangeable in my posts) to a much higher, more prominent level.  I know that there are many different blogs out there about beauty, fitness, weight loss and being a housewife, but what I don’t see are many people writing about about a fitness and weight loss journey when you’re living with a  disease that causes your muscles to be significantly weaker than the “normal” human being.  It’s a completely different world out there for people like me sometimes.

 

Honestly, most days I don’t really think about the fact that I’m differently-abled, except maybe at little moments throughout the day like walking with Erik and easily falling behind if he’s not paying attention to how fast he’s going (which he’s gotten really good at managing in the year that we’ve lived in the same state) or me having to go through the extra effort of getting a step stool to reach something above my head because my arms won’t lift much past shoulder height.  These little things have simply been facts of life that my family has lived with and accommodated so well over the years that they hardly feel like disabilities at all, which is why I keep using the term differently-abled rather than disabled.  I don’t consider myself to be a disabled person, despite the reality of my having a physical disability. I can do most things on my own or with just a bit of help, so I simply am a little “differently-abled” than the fully functional human body.  I can do most things, maybe just not in the same way you would.

 

Sure, there are days that my body simply doesn’t have the energy to move much, and there are days that I really feel the Muscular Dystrophy deep in my muscles and I’m really weak (when my hands are having a bad day I can’t do much of anything productive since I can barely hold on to things..), but all in all I’m a pretty normal woman.  Heck, when I was little, for awhile people doubted that I would ever walk, and now I have a degree in musical theater and can sing and dance on stage, and I have a blog with health and fitness being a primary component of what I write about and live out.  When I was a baby I bet my parents never imagined I’d accomplish walking, let alone those other things.  PS: Walking is one of my favorite outdoor activities now 🙂

 

Why am I telling you all of this?  I wasn’t quite sure how I wanted to incorporate my life with Muscular Dystrophy into my blog, but I know that I really want to.  I’ve always been really open about my disorder and am willing to talk about it with anyone.  Friends want to know details about my history, kids and students will flat out ask me why I walk funny, and Erik continually strives to want to know more about every bit of what I can and can’t do, and I happily and willingly will discuss things with any of them, and I’m willing to talk with you, too.  That’s why I have decided to start a new kind of series or section for Diva and the Divine.  “Diva and the Dystrophy” will be posts specifically geared toward anything related to Muscular Dystrophy; fitness, day to day life, product reviews geared toward things that help me physically, FAQs, etc.  The possibilities are endless.  I just feel that since I have the chance to blog (and people actually read it sometimes), I would love to maybe make the world just a little bit more aware of a condition they might not have known existed, or even better, reach out to someone like me who is maybe looking for advice, support or just to know there is another person out there going through the same sort of struggle they are.

 

Maybe you will find this interesting, informative, or even inspiring; then again, maybe not, but either way Diva and the Dystrophy will be here to stay.

 

At any time please feel free to comment below or email me (you can find all contact info in the sidebar) if you have any special requests for this subject matter.  As I said, my life with Muscular Dystrophy is an open book, and so far it’s been a pretty interesting read 😉

 

Thanks for reading my friends.  Have a happy day!