Rare Meet Up

I have this bad habit of comparing myself to other people, especially those who have overcome such horrific things or health trials and I say to myself, “I want to do something BIG like they are!” – I see these breast cancer survivors on Twitter who are going to Third World countries and volunteering in orphanages or parents of children with rare diseases who are starting foundations.

Is there a foundation for Cowden’s Syndrome or Lhermitte-duclos Disease?  Um, that would be a big freaking NO.

What can I do?  I feel stunted here.  But then I look at my health (shingles is a good example), and I say, “Well, self.  There’s no effing way you could even travel to X to do some big thing because of your health and it wouldn’t hold up.”  But then I think, “Well, I worked out this morning.  I get up, I eat breakfast, yes I am overweight but I mean my head has healed and I’m able to be independent so why couldn’t I do X or Y or Z?”


So the purpose of this post is to write about last night.  I have been in touch with an organization called “Global Genes Project” in Southern California and they are beginning these “meet ups”, and I decided to facilitate one in my local area.  It was great!  There were 4 of us total and we did come from different directions (they came about 30-45 minutes North, East, etc.) and we shared our stories, ate dinner, and talked about what we hoped to carry out in a “Rare Meet Up.”  It was so awesome for me to be involved with this because I was able to speak with others (even though they don’t have CS or LDD) who are REAL LIVE PEOPLE! 

None of this F.acebook support group garbage that drips with negativity and hostility.  These were real people who are trying to take care of their children (I was the only one who was THE RARE DISEASE PERSON, which was kinda odd, but no big)….and it was just a great experience and I’m thankful that I was a part of it.

Our purpose for the next meeting (probably September) will be to reach out and network more with our local areas to let them know about the Meet Up to see if others would be interested or think they might benefit from it.  I’ve heard that other Meet Ups might have physicians speak at some point, or something along those lines.  Who knows…but wouldn’t that be neat!  I need to get some of the flyers to my primary doctor and my oncologist and the others last night will do the same to network and raise awareness.

In sharing my story to them last night, I didn’t cry (HAH!) – and I found it really interesting that this meeting happened 1 year and the day after my diagnosis of the brain tumor, July 19, 2012.


5 thoughts on “Rare Meet Up

    • Thanks my friend! It was neat and actually very HEALING…considering all the ridiculousness that ensued months ago. This was a positive step forward and I have to say I am SURE glad you have your blog so that we may keep in touch! I have to say ALL that drama was worth going through if making you my one contact came out of it. I’m saddened there weren’t more but that’s ok! Everyone else is where they are at. 🙂 ❤

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