A Meeting of the CMT Chicks

I decided to write this blog for purely lazy reasons...so I wouldn't have to tell the story of my pursuit of surgeries to my husband, my parents and my sisters over and over again with all the details. I never imagined that by deciding to share my story on this public forum, that I would gain so much, especially with the people that I would eventually meet through here.

One of my very dear friends now, who is always there for me in moments of happiness and sadness, who is more involved in my life than friends who I've known for years, is the first CMT friend I made through this blog...Jessica. I am so thankful for her friendship and for having her in my life and honestly, it all happened because we were both CMT bloggers.

Jess and I on one of our first outings together...the day we met Bernadette!

Then I went on to meet four amazing women in all different parts of the US and Canada, who have also been an amazing support system and great friends. Each one of us has been doing our part in spreading the word by blogging away about our lives with CMT and all the shenanigans we get into. We started off by creating a private group on Facebook for the five of us where we could discuss things more privately, share tips and ask questions of one another. And then someone, sorry I can't remember who, came up with the wonderful idea that we should all create a joint blog: Clicks for CMT: Bloggers Raising Awareness. Our joint blog has been a great venture for us all and given us an opportunity to do more for our cause.

But I live in Connecticut, Esther is in New York (we were able to meet at the Bernadette screening in NYC), Melissa is in Utah, Lenka is in California and Nicole is in Canada. We would LOVE to have a weekend for girls' chat and to just finally meet in person when we have all shared such deep personal thoughts and feelings and really relied on one another for support.

Esther and I got a HUGE treat this week because Nicole and her family came to NYC for their summer trip. We all planned to meet at Frank Sinatra Park in Hoboken, NJ this past Wednesday. It took us all a little while to find each other, but when we did, we just had the best time!!! It's just such a great feeling when you have known someone for a few years and then you FINALLY get to hang out and chat...I could not have asked for a better afternoon! It was great to see Esther again and hear about her adorable kids and to meet Nicole and discover that she is just as wonderful and bubbly as I pictured in my head! 

Another treat was to finally meet Jay as well...after all we've read about him! I think it was great for John to meet Jay and hear about the role he plays in his family since John's is so similar in ours...

Our boys...too bad Adiel couldn't make it this time!

It was just a beautiful day ...

 

CMT may be an obstacle and there are days when you sure wish it wasn't a part of your life, but if it weren't for CMT, I would have never met these wonderful people who will always be a part of my life!! Now the goal is to meet Melissa and Lenka...soon enough, we hope.

EXTRA! EXTRA! Read All About It!!!

Today is a very exciting day for our collaborative CMT blog: Clicks for CMT. The Hereditary Neuropathy Foundation wrote a great article about it (Kudos to Melissa for getting this interview). To read the article, please click HERE. It's so exciting that our Fab Five blog is getting this exposure!! 

We have had over 3,500 views this past month alone!!!! When the 5 of us set out to do this, we definitely did not imagine that it would get so much momentum so quickly!!!!

Keep up the wonderful work girls!!!!

CMT's Fab Five

Long ago when I started my blog just to keep my family updated, I never imagined how far it would take me.   I have met some amazing individuals and I am so grateful to have them as part of my life. My very first CMT-BFF whom I met, is my dear Jessica of In The Pursuit of Pretty Shoes. Jess actually came to the hospital during my first surgery and that has been the beginning of a beautiful friendship I am planning to have for life! She has stayed at my house several weekends, we have visited her in NYC, she traveled from Colorado for our wedding reception and she was the person who I talked to at the height of feeling down last November/December who helped me to see the light and start to feel better about everything.

CMT friends are uber special even though you may have never met them in person. CMT friends know and understand what you're going through. If I need to talk about my issues to a "regular" friend, even though they are very nice and understanding, I never feel truly comforted and end up wishing I hadn't "complained" so much. These last two years have shown me that I should rely more on these new cyber friends, who are such a real part of my life, and who are always willing to lend an ear and talk you through difficult times and are so happy to share in your happy ones.

I would love to introduce you to the other less known "Fab Five." We have all become great friends who have more in common than just a silly-named disease. We are young(ish...LOL), love life, always try to keep a positive attitude despite our difficulties, have very supportive families, and have shared passion for TV shows such as Grey's Anatomy. We have many similarities in our personal lives, yet our CMT symptoms could not be more different.

From top left: Melissa, Me, Esther, Nicole, and Lenka

Lenka lives in California and has 2 beautiful children. She interviewed me two years ago for CMT Awareness week podcast (listen HERE) and we've always kept in touch since. Nic lives in Canada, is addicted to the same TV shows I am and has 2 beautiful boys. She was kind enough to talk to me for almost 2 hours to help me with an issue and some CMT related questions I had. Melissa found my blog and read the entire thing in one night  (Insane!), is a super mama of 4 and lives in Utah. We have talked over the phone and several chats and she motivated me into looking at starting a support group in CT. Esther is a mom of 2 with a new baby on the way and lives the closest to me in NYC. It's mind-boggling we haven't met despite our best attempts. It will hopefully happen very soon.

These 4 ladies have helped me more than they can imagine and I am so grateful to each and every one of them. Someone PLEASE forward this post to Ellen so she can orchestrate a surprise meeting so we can become an overnight sensation like Sophia Grace and Rosie!!!! Seriously, I have never met any of them and it would be amazing to spend a few days together blabbing away. It might happen next summer, as Nic plans her family trip to the Big Apple.

Lenka had an amazing idea to do a joint blog where we can either re-post some of our entries or write original material in an attempt to raise more awareness for CMT. You can check it out here: Clicks for CMT: Bloggers Raising Awareness.

You can find all the bloggers and their sites here:
Melissa: My Life With CMT
Lenka: Lenkaland
Nicole: Nattering Nic
Esther: Contemporary Mom of Two