Charcot-Marie-Tooth Awareness: In the News!

Charcot-Marie-Tooth Awareness: In the News!

Some SwEET day... We will All Meet.. My cmt friends... Ty. U saved me.

11:11....

This too shall Pass......

vindicated lyrics by dashboard confessional

My Chemical Romance - I'm Not Okay (I Promise) (lyrics)

Arlene Foreman, M.S. - Therapist in Philadelphia PA

Arlene Foreman, M.S. - Therapist in Philadelphia PA

She has been my therapist off and on since I was first told by my family I need to talk to someone. I was about 20..i think. I'll never forget..my father seeing me shaking, and not eating, and weak, and stressed..,.he came in my room..very calm and nice telling me about a very Wise and helpful woman named Arlene Foreman She was right around the corner in Ardmore, he said..."I've known Arlene for 15 yrs, I cut her hair,," he added, proud and confident she was gonna help me....
Well....Boy was my dad Always right...:) Thank u Dad.. and Arlene.....YOU SAVED MY LIFE ARLENE..AND U TOO DAD..THANKS :) I wanted to share her website ..feel free tk listen to her on the radio..its Very good..also.;.at the very bottom of the site..u can click Audio comemtary....click n if u feel u need a new perspective..listen to them..I just recently started seeing Arlene again,,and i remembered how to change my thoughts..she is my ANGEL.mentor..i always thought it...I am who i am now, bc of her guidance..Thank you Arlene..:) I'll Never give Up..
B

Nicki Minaj - Fly ft. Rihanna - Lyrics.

Heading to the Big Apple now...Today is a big day for me...
Here goes nothin..
Oh and Happy Birthday Chuckieeeeeeee!!:) I'll come visit very soon.
Love u.

Tomorrows my big day in NYC ...

Tuesday October 25th is my big day!!:).

just breathe -Pearl Jam (lyrics)

Great days ahead....

Educate, Educate, Educate…Don’t Sell.

Educate, Educate, Educate…Don’t Sell.

Today's a Good day ... :)

I'm itching for another tattoo. :)
I Hate when ppl lie... It's kinda sad. They r the ones who suffer in the end. I can't wait for time to be on my side ...

3 friends... Gone. But thousands coming! Thx cmt ... I have a purpose at least I know That's true!

Dear Karma... Please come sooner than later!! Ty.

Time will heal .. I know it.

St. Bernadette.... Pray for me...

"The same wind can blow into a thousand different orifices,
and yet each sound is produced in its own way.". Be Yourself :)

I hope u all like my story one way or another...

I don't know who to trust!? Does it Really matter?

Rough week. Hope things get better .... I'm still smiling tho!!!

Thanks Joey Mas ...u r Brilliant!!! More pics coming ! Feeling ready !!

Today is my Parents wedding Anniversary ! Would have been 37yrs ... Love you Both! We miss u A lot Dad!!!!!
HAPPY ANNIVERSARY !

I Want to meet Lady gaga ...that's who I pick!!!!

Babybird - Dead Bird Sings - Later 2006 S8E3

Mumford and sons - White blank page (with lyrics)

new Website and Trailer

I'm very excited to show the new trailer...it is Nothing compared to the rough cut of the film that I recently saw...I'm doing better these days....www.bernslife.com

Michael Jackson-Human Nature Lyrics

It's been a few days. Alot going on with every angle of my life...I need to get out so much but can't seem to find the words and don't think I can explain...things r good..don't get me too wrong! But lately the stress of many private things are getting me too worked up and I'm not caring for me as I should be doing. I often feel
mis understood !
On a good note, my fundraiser on Friday night was great! Many friends and family came out and I met some really amazing ppl.
I need to get out of this house. Plz....Josh. Make me Famous for Cmt. I want to be free and possibly travel the world to go see my new Cmt friends!!! This film can be ongoing. Im Just beginning and won't ever stop!! This Doc saved my life!!!
I said it b4 and will alwYs say it.
Fathers day just passed. Just the thoughts of my dad seeing all this w me.......I get signs all the time so I know he's where he's suppose to be ...and he's just fine. I am selfish to want him back as much as he suffered inside and Out. Always had a smile, was there for Anyone, and now I see....that's who I am. Thanks Dad. I'm always gonna b happy...but I am allowed to have my days..even weeks !!!
Waiting for the new trailer to be on the site still. Sorry this takes time I found that out quick:)). Good night for now...

Btw....the fundraiser is June 17th, fri. At 9pm. $30 open bar/ food. Come support the first Film ever being done about living with CMT..thank u all!!

Today was a much better day ...I feel ready and excited for my Film Fundraiser!! I'm excited to see all my friends and family! Some ppl w CmT r coming to meet me!! This is gonna be a night I'll never forget!!! So I'm getting ready this week. I have been out and about more and it's nice to feel a part of society again. I go thru that every so often.
Ok..I'm done. Gn.

Today feels like summer...it's hot but I love it. I have been going over my moms house and swimming. It feels great to stand walk hop skip and jump again...in the water:/. My mom heats the pool, and is in the process of getting a chair lift to get me in and out !! I'm excited for that. I remember sitting out there and jumping in the water..diving, walkin in and out all alone...Independence is what I crave most!!!! But I'm also ok with my fast progression of Cmt bc it's what was planned for me. I see that Now...

Not a good night. Can't sleep bc my mind is racing ..bitter sweet holiday today at my moms. Missed my dad by our pool w us. It f-ing sucks !!! My Gmom isn't doing good(moms mom). I'm so miserable. Ppl lately have lied to me to protect my feelings...ughhh. Can't they hear me whn I say PLZ Don't lie to Me! !! That's all I ask.............

I'm holding a Fundraiser on JUNE 17th in essington , PA for The film BERNADETTE
plz join me at the
Deck at Harbor Point
101 Taylor Ave
Essington PA

$30 per person includes music, open Bar from
9-12am. DJ out on the deck and we will be filming so I would like to meet some new Cmt friends and we can possibly interview for the film!
Ty for ur Continuing support !
Xo

Today I was at an elementary school w/ carol Lue talking about Cmt and the book Arlene on the scene" a true story for children about a young girl w CMT. It went well
Glad I was a part of it.

I miss my Dad soo much. This film is my life and I can't Not think of him. I miss and love you Dad. U know who I Always was meant to be!! Thank u for all ur wise words and actions that I carry w me .,.

It's that Time of month again...ughh. I feel awful , inside and out. I'm sooo tired and weak every month for at least 2-4 days b4and during my cycle. I'm sure I'm not the only Cmt girl who feels my pain. I make sure I take my Isotonic vitamins everyday and it definitely helps me. Compared to how I used to feel b4 I started taking these vitamins. Ive been on them for about 5 months now and I'm so glad I did. My cramps are barely there ...as I am comparing to my worst pain w/out vitamins. I remember the raw milk also helped my cramps. But if u buy raw food or any raw , make sure it's from a good source /farmer.
Looking forward to tomorrow.. Another sunny day. Hope I get to get out....

It been a good week ..phillies r doing Awesome , my birthday was good..and I'm enjoying the spring weather. I have noticed tho ..that yesterday was 80degrees and I felt really numb, and weaker. So now I'm worried about the summer. If it's not 70-78 degrees, than I feel it ! I always thought the cold was worse, but after the last few Hot days, I was wishing it was cold. I can't make up my mind. Ha. They both Suck! I got an email today from a 27yr old , Adam. He lives in South Africa!! I have never in my life thought ppl from SA would be contacting me with CMT. He and I have been talking and he's very handsome and nice.
Ty Adam for reaching out! And I hope to one day meet you..to travel all over this world and meet others with Cmt.
I'm a little sick today. Head cold, and Allergies. It gets so bad at times. Claritin helps me tho.
Ok. I'll ck in soon! Film is coming Along..:)). This is gonna b a good summer!!

"BERNADETTE" - LIVING W CMT - CHARCOT MARIE TOOTH

I saw new footage for the Documentary!! Wow!! U r all gonna really see what has been going on and how CMT is Really real!!! Stay tuned! :). The music As well is making this film even More captivating!! And seeing my Dad again .....the best gift of All!

Phillies are doing Great !!! I love watching them play!

Book Project

My friend Jim Sindaco is pursuing a degree in photo-journalism at Temple University in Philadelphia, PA. He recently asked me if he can write a book about my life and living with CMT. He explained that he is going to do research and spend a lot of time photographing me. It will be a hard back book and can be used in the film. I've known Jim since middle school, and I am honored he chose to use me for his project. I'll keep you posted on our progress. Hope everyone has a good weekend! Go Phils!!

New York Science Times features print article on CMT

Tuesday was a great day for me! I was featured in the Science section of the New York Times, along with others with CMT. Check out the online version at http://www.nytimes.com/2011/04/05/health/05charcot.html?_r=1. These are big steps for the CMT community and I can't wait to see what happens next :). Thanks for following me!!
GO PHILLIES!!

New York Times

Hi, I know it's been a while but I'm going to start posting more haha! Today the New York Times launched a segment on Charcot-Marie-Tooth. I was featured in it along with 5 others who have the disease. Check it out at: http://well.blogs.nytimes.com/2011/03/31/the-voices-of-charcot-marie-tooth/. Things are good, feeling good... getting ready for the warm weather, and my birthday is coming up.