Finally – the power of #braintumorthursday

This post is so overdue.  I don’t know why I haven’t sat down to write about it yet.  Before something else comes up and distracts me I want to get this down.

Months ago I decided to try Twitter.  I’m not sure why.  I didn’t understand it for the longest time and was actually kind of scared by it.  It intimidated me.  HAH.  But, I heard stories of “Such and such” happening via Twitter…I decided that maybe it was time to get over my fear and jump in with both feet.  I feel this urgency at times about getting my voice out there.  Making sure others know about Cowden’s and Lhermitte-duclos too.  I knew I needed support since I was having so much trouble finding it in other ways.  I just downloaded the app to my iPod and at first I think I followed some Disneyland people.  Things have blossomed from there I’m happy to say!

By the grace of Heavenly Father I found #btsm (brain tumor social media).  At first I felt like I didn’t “belong” (which is a really silly way to feel, I know, and have since gotten over it too)…because most of the people who tweet with that hash tag are brain cancer survivors/caregivers, someone affected by brain cancer.  I AM SO UTTERLY BLESSED THAT MY TUMORS ARE BENIGN.  I know this.  THIS I KNOW.  But then?  You know?  I let Cowden’s come into my head (no pun intended) and I begin to go to the bad place…about all the CANCERS THAT CAN COME WITH COWDEN’S.

Anyways…I digress.

As I am learning Twitter, finding people I like to follow and who’s tweets I want to read, things like that…I’m starting to feel a “virtual friendship” with some people who are also tweeting with #btsm.  I’ve shared my blog address with them and read theirs too.  People that really do get it.  I know these people cannot hug me when I need a hug…but they get it.  THEY GET IT.  (Now, I still need the hugs don’t get me wrong…) 🙂

From #btsm I found the hashtag #braintumorthursday, and I think it was from that hashtag I began to tweet with this woman.  She profiles brain tumor survivors on her blog every Thursday.  I tweeted her, or commented on her blog, I’m not actually sure how it came around, but months ago she wrote up a profile of me on her blog!  It was weird/humbling/odd/uncomfortable/wonderful/exciting all at the same time!  I got to share my story with Internet people (who are different Internet people than are here).  🙂  She asks those who want to be featured answer 3 phrases in their own words,

I hope….

I wish…

I dream…

I am (be)…

(Here’s the link to my profile)

I have had a few people email me from her post months ago.  One person emailed me and asked where I lived (Nevada I think) because they saw someone with a Disney Dooney bag and wondered if it was me.  🙂  But then another person contacted me…turns out she was doing an Internet search (I believe) on her brain tumor and found my write up.  Can you believe the power of the Internet?  It turns out that we have the same type of brain tumor (gangliocytoma) – and she has Lhermitte-duclos Disease (LDD) too.

Here is the link to her blogWould you please visit her blog and tell her hello?  The fact that I connected with another person with LDD is fascinating to me.  With Lhermitte-duclos Disease making up less than 1% of brain tumors (rare disease anyone?) – the fact that Twitter/#braintumorthursday/another blog connected us is quite amazing.  Really really.

We’ve spoken by phone a few times, follow each other on Twitter, and read each others blogs.  She shared with me her story, just briefly, and I’m humbled by her and what she’s endured.  Her brain tumor was located where my 2nd one is…in the middle of her cerebellum.  Thankfully (!) the larger one I have that was pressing on my ventricles and causing hydrocephaly and the chiari malformation was located towards the bottom of my cerebellum and (some of) it could be removed during the surgery.  Hers was different.  😦  I’m not going to share her story here, that is her decision if she’d like to do so.  But suffice to say gangliocytomas are BEASTS and not nice.  (And…I must pray that my 2nd one stays small so that it doesn’t get as large as the big one so I don’t suffer severe complications again.)

The Internet can really be used for good purposes!  It’s amazing to me that a blog and the Internet…that 2 people on the other part of the US can connect and provide support to one another.  WOW!  Thanks Megan!

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11 thoughts on “Finally – the power of #braintumorthursday

    • Ditto! I know there are a handful of us with LDD I just wish there was a central location we could all “meet” together to try to support one another. Sorry we didn’t touch base this weekend. 😦

      • It would be great to have a way to connct wit everyone. Our church service starts a little early. We are usualy home a little afternoon. I think you are hours behind us? Call this weekend. I’ll let you know if something comes up.

  1. What a wonderful post Heather! Thank you for sharing your story. I am so glad you two met. The internet does have some great communities where people can connect on a very real level. You are doing a great job on your blog. It looks wonderful and very inviting. Thanks for raising more awareness for “#Brain Tumor Thursday.” It is amazing to connect with people all over the country and the world that are dealing with brain tumors. People are amazing and their stories always inspire me. I am honored to be apart of this community too.

    • You are helping spread that inspiration…. 🙂 I never wanted to be part of this “club”…but now that I’m here I’m doing what I can to embrace it (if that makes any sense) and make sure my voice is heard.

  2. Pingback: Why I think #BrainTumorThursday is so important | Brain Tumor Awareness

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