Why do I have a blog?

I have mulled this around in my head for the last little while.

Why do I do this?  Why do I write?  Why do I share my story?  Why do I talk about Cowden’s Syndrome?  Why do I talk about the brain tumors/Lhermitte-duclos disease?  Why do I write about my fears?

When I started this blog last year the purpose was to update friends and family of the surgery information.  My extended family lives out-of-state and I usually only communicate with them via Facebook, so creating this blog and then posting the updates on Facebook seemed to make the most sense.  Sometimes, I read my posts from those first few days (from diagnosis to-day before the first surgery) and I am so thankful that I’m no longer at that point.  But, if someone came across my blog who has a brain tumor diagnosis – I’d want to them to know that it gets better.  It gets easier.  The pain subsides.  The fear gets easier to manage.  All these things that I had no idea about last year…and writing has helped me come to this understanding.  It is one of the many tools for which I am thankful that has gotten me to this point today.

But now, there’s more to my life than brain tumors.  There’s this thing called Cowden’s Syndrome, a rare disease that affects about 1/200,000 people, give or take.  This thing/guy/unwanted guest is a part of my life, and it’s a daily struggle for me to remind myself that he does not RUN my life.  Lest he RUIN my life.

As more time has passed I’m finding an entire Rare Disease Community that I never knew existed!  I’m not alone!  There are others who “get it”, in their own way.  I want to educate (as best I can), I want to tell others about Cowden’s Syndrome, what it is, what it entails, because in turn it helps ME.  Maybe I don’t articulate it very well yet (my PTEN gene is mutated.  “What’s your PTEN gene?  What does it do?“) but in writing and networking with others who have Rare Diseases it helps me take ownership.  Helps me to feel empowered that I am running the show, running MY life…not the other way around.

In documenting my fears of the unknown (cancers) – it has helped me to see more clearly the blessings and miracles in my life.  By writing about the bad and panic-filled days it helps to counter with #ohik (Overheard in Kinder) days.  I know a bit better now that without the bitter I could not appreciate the sweet.  Although in hindsight I wish I didn’t have this bitter pill of Cowden’s Syndrome, but we all have our own pills.  The trick is figuring out how to make it work for you.

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One thought on “Why do I have a blog?

  1. “Why do I have a blog? hopeforheather” was a quite nice posting, .
    Continue creating and I am going to continue reading!

    Regards -Casey

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