When Twin A met Twin B

I went to my 1st post-op appointment this past Thursday and got to meet my new right foot. It was such a relief to see it and know that everything went well. Dr. Feldman was extremely pleased with the results and how my foot is recovering. I got a new cast that will come off on November 2nd...now I just have to sit tight and anxiously wait til then.

How beautiful is my new foot?  :)

My Identical Twins

Surgery #2 and an Unexpected Surprise

I am happy to report that surgery #2 was a success!!!! This time I felt so much more prepared and at least I knew what to expect, except for the delay. Unfortunately Dr. Feldman's 1st surgery ran late and mine didn't start until 3 hours later...needless to say, I was STARVING!!!! I saw a lot of old faces from the first one too and that made me feel even more comfortable.

The days that followed were very similar, A LOT of pain on the first day, a lot of itching (as a result of the meds), drowsiness, dizziness and all that good stuff. But there were also a lot of the great things from the first one, visitors that brought me yummy food and TLC...Thanks Jess for my Mexican food, Dorothy for Crumbs' cupcakes, Vero for my Get Well Teddy Bear...and also all the beautiful flowers from other wonderful friends...

At home, the first few days were really tough too, just getting used to my strong meds again, the dizziness, and how much they affect your belly. Oh man, getting up the stairs coming home was hard again, how easily the body forgets LOL. After 3 pretty crappy days, today has been a much better day!!! Feel like myself again, just with a cast at the end of my right leg. And my left foot is behaving so nicely, all new and strong, supporting the weight of my body with no complaints.

I feel like a weight has been lifted, like I pulled the band-aid. The surgery is done and now it's just my way to recovery. I already go see Dr. Feldman to remove the first cast and the stitches next Thursday and before I know it, I'll be walking again.

And in the midst of all this craziness, I got the best news...I got the job!!! I cannot even start to describe how excited I am! Things were really meant to be!!!! My original surgery date was September 20 and then Dr. Feldman's office changed it to the 22nd. And instead, I had a first interview on the 20th and a second interview on the 21st. And they loved me (Why wouldn't they? I am pretty fabulous!)! They're going to wait until I recover so my start date is December 1. I am so so happy that I don't have to look for a job as I start to get better, that I have an even better commute than I had before, I get my own office, and most importantly, I get to do what I really really enjoy.

So I guess the lesson here is to keep your head up, just as you are struggling in life (i.e. pain), God has a plan for you and he might surprise you at the end of the day with something totally unexpected :)

My aunt, visiting from Brazil, got tired of the waiting too and decided to take a nap LOL

Here we go again!!!

It's finally the eve of my 2nd surgery!!! As weird at it is, I'm really excited!! WOOHOOOO...I'm ready to get this show on the road and get better already. Thank you to all my friends and family who called, texted or emailed me today to wish me good luck. Once again, I truly feel loved and appreciative of all the support.

I had a really exciting surprise this week...got an unexpected email from a recruiter on Thursday about a perfect job 15 minutes away from home, which is exactly what I did and love to do...Marketing for Professional Services firms. They loved my resume and asked me to come in, after interviewing yesterday, they asked me back for a 2nd interview today. They are aware of my "situation" and the big dilemna is whether to wait, or not to wait...I think they'd be crazy not to, because after all I am pretty awesome! But I won't know more until at least some time next week. It would be fantastic to know I have a job as I'm recovering!!!

But on other breaking news, I wanted to post a couple of pics of my right foot before I say goodbye to it:

Picture of my Fraternal Twins

Bye Bye Footsie!

Podcast with Lenka

Today I was very happy to "meet" another blogger I've been in touch with since I started this blog. I had the pleasure to "meet" Lenka over the phone for a podcast she's doing to kick-off CMTA Awareness Week.

Lenka lives in California and interviewed 3 people with CMT from North Carolina, Texas, and Connecticut (me). We have CMT types 1A, 1B, and 2. She wrote a great entry on her site as a result of our discussions.

Please take a moment to read and listen ... It really is amazing how people spread all over the US who have never met can have such similar experiences. If you want to start by listening to my conversation with Lenka, fast forward to minute 60:

Podcast! CMT Stories with Three Special Guests

Happy CMTA Awareness Week!!!!

My Buddies are CMT too :)

Click on pic to see entire thing...

Blue Circle: Nic
Red Circle: Little sis, Mica
Green Circle: Jess

I am CMT

CMT Awareness Week is almost here and the CMTA (Charcot-Marie-Tooth Association) has set up this special website: www.wearethecmta.com

Please take a moment to browse through the site where you can find facts about CMT, events going on this week, the many faces of CMT (can you spot me in the crowd?), and most importantly, donate. If you can, please donate to CMT research so hopefully we can have some form of treatment or medication in the near future and who knows? Maybe even a cure....

Small Change of Plans

Today I woke up with a phone call from my surgeon's office "about my surgery on September 20th." Immediately I thought "OMG What is the problem now?"

For some reason, Dr. Feldman can't do the 20th anymore, so now my surgery will be on Wednesday, September 22. While I am not horribly upset, I am a little annoyed because I am so ready to get this show on the road.

So I guess I have 2 extra days to paint the town red!

Cristian & Ivete....

Today I am so so sooooo happy! Happy that I decided to re-schedule my surgery to September 20 (It was originally scheduled for August 27). So happy that it has been four and a half months since my first surgery and I'm feeling so great.

Yesterday, September 4 was just an amazing day.

First, I got to meet my little nephew that came into the world at 4:38am...Cristian is healthy and chunky at 8lbs 10oz and 21 inches long. He is just so beautiful and adorable! Congratulations to John's sister, Heather, and her husband, Joe.

Then, I headed off to Jersey where I would go see my idol, my favorite singer/performer of all time, Ivete Sangalo, perform and record her 4th DVD at Madison Square Garden in NYC. I bought these tickets months ago when I was still laying in bed with a cast on my leg, not knowing how I would be feeling by today. But I love her so much that I would have gone even if I had to sit in my wheelchair the entire night. It was a FANTASTIC show and it truly felt like we were back in Salvador....Bahia....Brazil....

To see more info about her show, click HERE

I've gone to many of her concerts back in Brazil and to think that this time she would be here, so close to us...I really couldn't imagine myself not going to this, regardless of what condition I'd be in by now.

I am so thankful that my foot is feeling better...I danced, jumped and sang at the top of my lungs for 3 hours...of course taking breaks to sit down during the slow songs. And to my wonderful surprise, my new footsie wasn't even swollen when I got home and didn't need to be iced. I enjoyed the chance to party because in 2 weeks I'll be back in a cast...starting the next chapter of my recovery process.

Since I still have 2 more weeks of freedom, I'm going to enjoy baby Cristian as much as I can, celebrate John's birthday on September 8, go to a wedding on the 10th and dance with my hunny, hang out with friends and family....

I am so ready for this surgery. I can tell how much better my new foot is compared to the old one and I'm ready to have two new feet ... I hope the 2nd time around is as great as the 1st one....

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.

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 =)

"Bernadette"

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:
"Bernadette"

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.

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.

Cheers to Getting Better

Thank God everything in life passes...and I am sooo thankful that the excruciating pain I felt a couple of weeks ago is gone. My old pains are back and I can't tell you how happy I am to be just having my regular pains...LOL. Sometimes life really puts things in perspective for you!!!

It has been 3 months since my surgery now and I continue to reach milestones...like dusting off my car (literally) and going for a ride. My car sat for so long that a spider decided to keep it company and build its home there!

In honor of my 3 months, John and I went to celebrate by having lunch at Olive Garden...OH MY! How I missed their food!!!!!!!!! To say I pigged out is an understatement. After our wonderful lunch, we went shoe shopping because I am tired of wearing the same pair of sneakers every day. I asked one of the shoe store employees to give me one of those foot measuring things so I could figure out my shoe size once and for all. Well....my shock wasn't to find out my NEW shoe size, it was to find out how little my original feet really became.

In high school, I used to wear a 6.5. Well, this weekend we found out, my right foot is a size THREE!!!!!!!!! 3...TRES...III...TROIS...TRE!!! Isn't that a child's size? No wonder shoe shopping has always been a dreaded event for me...and my new shoe size is a 6, which is nice, it's average. It should be easier for me to find shoes from now on and I left the store with a new pair of sneakers :)

Having surgery and recovering during the summer is definitely not one of the easiest things...I am constantly icing my foot to keep the swelling down, it's so hard to match my cute summer outfits with sneakers or my boot, I am definitely not wearing flip flops outside in this heat...but on the upside it's one summer of my life. And I'm hoping by next summer I have two pretty new feet to flaunt.

So...to celebrate that my funky mood is gone and that I am walking and that life is good and 3 months went by quickly and my next surgery is on the horizon and the excruciating pains are gone and my new size 6 foot and that I'm lucky to be alive...cheers to getting better!

Sometimes You're Up and Sometimes You're Down....

This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.

Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.

Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?

And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.

But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.

Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.