Let’s Meet Each Other (& a big THANK YOU!)


Wow. Wow. Wow.

To say my last post got a little traction is an understatement.

Boy, I ask for help and you guys just turned out of the woodwork.

My video got responses from all over the WORLD. I got Facebook messages, emails, comments, hundreds of shares and likes. And that was just from strangers. Thankfully my message also seemed to hit home with some people in my local life and I’ve been reconnecting with friends all over the place.

I can’t express my gratitude enough. Seriously. It would make the internet explode. Thank you for reaching out, for offering support, for offering advice—for offering solidarity and understanding and just letting me know that I was not alone.


You know, I do a lot of talking to myself on this blog. Sometimes it’s easy to forget that I’m actually talking to a great big world out there. A great big world who has now seen me blubber hopelessly with no make-up on. You have seen me in all my realness.

I guess that means I can stop wearing a bra now, right?


Fine, fine.

Well, the message was received. Loneliness, friendlessness, isolation—these are UNIVERSAL experiences by patients with chronic illness. I didn’t realize how very much of an issue this is in the rare community. And while it is huge, and wonderful, and unimaginable to have such a large online network of support—we all need that local, come-to-my-door, hold-my-hand-through-this-procedure support.

We need each other.

I wish I could fly to all of your homes and have a cup of tea with you while you tell me what’s really eating you up inside—but I can’t. But that doesn’t mean nobody else can. Undoubtedly some of you must live in the same state—if not the same town. You need each other.

So reach out. Use this thread to list your city in the comments. Try and find each other here. Ultimately I’ve seen the need and am working on ideas for other ways of connecting with each other—but until that gets rolling start here! Start now!

giphy copy

Where do you live?