Thursday, August 19, 2010

2 out of 3

Life is so perfect, even in its apparent disastrous ways. I thank God everyday for His presence in our lives and the knowledge that no suffering comes without a cause. With that in mind, I wake up every morning and find strength to ignore the screams from my legs and hands and the deep desire to stay in bed, give into the numbness and the pain.

Hi, my name is Milena. I'm Michi´s younger sister (25). I, unlike her, have no talent to keep a blog. I truly admire the people who do. I specially admire my sister who has always been an example in my life; a true light in the dark.

Michele and I have always radically differed when it comes to exercise. I have always been very active; I loved to work out at the gym with weights. I danced, swam, hiked, practiced yoga --and managed to do all these with regularity. One day I was at my desk at work when I felt tingling sensations in my right arm. I was 23 at the time (the same age Michi was when she was first diagnosed with CMT). I went to the hospital but they couldn’t figure out what I had so they immobilized my arm up to my elbow. A couple of days later, the tingling hadn’t stopped, so I went back to the hospital and this time they changed the cast to one that reached my shoulder. I returned home but 6 hours later was in the emergency room screaming from pain and begging them to remove the cast.

Milena doing yoga in 2007
After that day at work, we all began wondering if I could possibly have CMT too. We weren´t aware then that it also affects the arms. So I fooled myself for some time thinking it could be something else. Two weeks later, tingling and pain spread to my left arm and 2 weeks after that it spread to both my legs and feet. I started feeling numbness in my feet as I was walking to physical therapy one day and suddenly couldn’t take another step.

Life changed drastically since that first tingling sensation. I was forced to quit college, stop working, sports and any hobbies that gave me a work out ... Michele had the patience to sit on the phone with me and hear me talk on and on about everything she always felt. It was a new and scary world for me. She took my hand and showed me the way when I was so overwhelmed and afraid that I couldn´t even think of the next step. Kalila, our other sister, the only one who doesn´t have CMT, was the best 'nurse' anyone could ever hope to have. She washed and brushed my long hair... She helped me eat, and sat beside me when I cried; whether it was because I was in too much pain or because I missed my old life. A life, I realize now, I´ll probably never go back to.

Me, Milena, and Kalila
Time passed and I got used to CMT and learned to live with it. Now I’m back in school, started practicing yoga again, and with the help of my boyfriend went back to walking/jogging. I jog for like 2 minutes without stopping and it feels amazing!!!!

I know God was very good to me, he prepared me through Michele. In all this time and through all the pain, Michi has never asked "why me?" She accepts her struggles and makes the best of it. She is such a beautiful fighter! It´s an honor to be her sister.

While I've gone thru some CMT turmoil, I have much to be grateful for; a comfortable home, food… I am blessed to have a wonderful man in my life who helps me and encourages me to move forward, and most importantly, a family whom I thank everyday for the love and support that has never failed me. Even with CMT, I am happy! It slowed me down, but it won't stop me from dreaming and from achieving the things I want in life.

Sunday, August 15, 2010

Lots of new CMT Friends

I couldn't sleep on Wednesday night (shocker!) and I was browsing the net at 3am on Thursday and found Bernadette's video (see previous post). After viewing and really being touched by it, I scrolled to the bottom of the page and realized they were having a fundraiser that very same night in NYC. I sent the info to Jess to see if she wanted to go to the event with me.

To make a long story short, we were really happy to make it to the event, had the pleasure to meet and talk to Bernadette and also met Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation, an organization dedicated to finding the cure for CMT. It was really nice to hear how much is being done to help find a cure for this debilitating disease. I commend Bernadette for making this video and sharing her life and story with the world...

To watch more of Bernadette's video, click HERE. The video is right on the home page.

Me, Jess and Bernadette

Today I had the pleasure to meet another CMT'er who originally reached out to Jess. Lisa and I talked for hours about CMT and how it affects our lives and I really felt like I've known her for a long time...I actually feel this way when I meet and talk to most CMT'ers.

These are complete strangers who share my struggles and who really understand what I'm going through. It is so comforting to talk to someone who really gets it.

It's funny that I started this blog only as a means to keep my sisters, who live in Brazil, updated and also because I didn't have to tell all these stories so many times. I figured it'd be easier if they just read it. I never meant to send out the link or share it with anyone. And little by little, this blog has connected me to so many people that I may never had had the chance to meet had it not been for this. I am really happy to have met them and hope that we can be there for each other...especially during our upcoming surgeries =)

Thursday, August 12, 2010


I just stumbled upon this video on Nattering Nic's blog and I am BEYOND excited!!! The word on CMT is getting out more than ever and this just gives me so much hope that help is on the way.

Click below to see the trailer that brought tears to my eyes:

Sunday, August 8, 2010

CMTA Awareness Week

How exciting that CMT gets an entire week to help build awareness??? Hopefully this will be brought to the attention of people who can really help to make a difference.

I will be celebrating in the hospital since I am getting my 2nd surgery on September 20.

Thursday, August 5, 2010

Summer is FINALLY here (for me anyway...)

I don't know if you've noticed that my entries have been a little bit more spaced out lately...I am happy to say that is because I've actually been living life and making up for some lost time. I spent so long sitting and so much time inside during my recovery that as soon as I started walking and feeling better, I started taking some advantage of it.

I just spent the last week in New Jersey with my mom and it was great!!! I finally went to the beach and started working on my tan, went to lunch with friends, visited my friend and her new baby, went to a bridal shower, surprised John with skydiving, spent the day at the pool and BBQ'd, visited a new dear friend and fellow CMT'er Jess, went to church, etc. It was just a really happy week!! It was great to feel normal again. Oh and it's also great how everyone is so happy and excited to see you after going through such serious surgery!

But in all honesty, I think I did too much. I was just soooo tired by the time I got back home to CT that I was a zombie all day yesterday. And to make matters worse, CMT brought me back to my "real" life and I fell pretty hard in our office yesterday. My right foot slipped in the flip flop and I lost balance. I didn't even have time to try to find something to hold on to, one minute I was up and the next I was hitting the ground. Thankfully, my left foot wasn't hurt. But as with any good fall, today my body is sore everywhere so I'm taking it easy big time.

During my awesome week, I also saw my surgeon for a final follow up and we scheduled the surgery on my right foot for September 20. So I have about 6 weeks to live up the end of the summer, before I'm in bed for a long time again. But I am really really really ready to do it. I am ready to start 2011 on a new page, with new feet.