Girl with blog

It’s so funny how when I’m napping, or laying down right before bed, and my mind wanders, I create the best blog posts!  But when I come to the computer – zilch.  🙂

Anyway, here I am.  I am a girl with a blog.  A blog about my life with Cowden’s Syndrome and Lhermitte-duclos Disease.  But what makes me different?  Do I even want to be different?  Do I want to stand out?  There are a zillion blogs out there.  Food blogs, music blogs, book blogs, fashion blogs, ad nauseam.  Then, there’s just me.  A health, medical, blog.    A tiny goldfish in the Atlantic Ocean.

Sometimes, I feel an (unnecessary) pressure/responsibility to write.  Tweet.  Get the word out there about CS and LDD.  I mean, these conditions are heavy, you know?  People need to KNOW about this!  And as I network more online and connect with others who have rare diseases (or Cowden’s Syndrome) I am never at a loss for words such as, “Man, what if my doctor had known about THIS?”  So, am I doing any good?  Does it really matter if I am or aren’t?  Isn’t this blog for me?  Or is it for a greater good?  I was triggered by something bigger than me (obviously) and now I feel a passion to do something.  Does that make sense?

I know I am not going to save the world.  Or, change the face of medical staff and what they know/learn/study in school.  (I mean, what if Dr. K hadn’t seen a gangliocytoma when he was training? Would he have even called out Cowden’s Syndrome?)  That may have just been luck, but regardless, I am grateful to him.  (And, I guess in a roundabout way, I am grateful for the brain surgery.)  I want to do something.  More.  I just don’t know how.  I used to have (what I thought) was this nice, quiet life and I went around with my head in the clouds.  Really.  I did.  I didn’t know hard.  Or fear.  Or Pain.  Or Anguish.  Nor did I know healing.

But then I think, “What about the other parts of me? The Church part; the family part; the (when I can) employee part; the (hopefully, one day) significant other part?”  THE NON-HEALTH PARTS – Do I have passion in those areas of my life as well, or am I only passionate about getting the word out about CS and LDD?”  I guess I do not want to get stuck in the wayside of the zillions of blogs out there.

I want to be different.  I want to be loud and proud ABOUT ME; not just brain tumors and rare diseases.  I know it’s about finding balance; my wish is to be a well-rounded person regardless of what my body is doing.


One thought on “Girl with blog

  1. I know and understand that pressure. Especially when people start expecting more from you. My moto is quality, not quantity. I state so many posts that never made it to my site. Unless it meets my stringent requirements, it does not get posted. What are my stringent requirements you ask? Actually finishing a post!

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