Sometimes Things CAN Get Worse...

I'm not sure what I did wrong...but I'm in too much pain to walk now. I've been walking great and about a week ahead in progress compared to last time. So John and I have been house hunting since I came back home and we saw 3 houses on Thursday. I didn't think that was a big deal since we had done that before. I came home and my foot was already bothering me so I decided to stay off it the rest of the day.

Then yesterday I stayed off it all day until it was time to go see Harry Potter. Since my friend got herself a baby sitter for the night and drove all the way up from Jersey, I didn't think it would be fair to bail. Well, I should've probably taken my wheelchair. I came back home almost wanting to crawl to my apartment door...that's how much my foot hurt.

So it's really swollen and still very painful today so I'm staying off it the entire weekend. It's kind of a bummer. I've been doing so great and my foot has honestly not hurt like this since the first couple of days post-op. Thankfully I see my surgeon in 3 days and we'll see if anything comes up in the x-rays. Hopefully it's nothing serious!

I'm in Pain...

I haven't really felt like writing these past couple of weeks because I have been pretty uncomfortable. I've been weaning off the pain meds carefully and a little more slowly than last time so I wouldn't suffer as much. And I finally called it quits on Saturday. Oh boy. What for? My entire body just aches, but mostly everything from my thighs down.

My legs have been hurting so much that I haven't been able to sleep (went to bed at 5am yesterday and only because of sheer exhaustion). Needless to say, it's been a rough few days. Yesterday, it definitely got the best of me and I got a good cry out of it. Then John was nice enough to take me to sushi, where we had an amazing dinner, and then we watched part of Harry Potter: Goblet of Fire (in preparation for Deathly Hallows on Friday, I can't wait!!!!). At the end of the night, I was really happy and not to mention, exhausted from lack of sleep, which trumped the thigh pain, so I was able to sleep at a decent time. But since I got a good night's sleep last night, it's probably too much to ask for two in a row, so I'm in pain and can't sleep because I'm so uncomfortable. Yes, I am tired but my legs just hurt too much. So I caved and just took half a pill, which will probably start working in 30-45 minutes and I'll be able to sleep then.

I cannot wait until Tuesday! First, I have my final surgeon's appointment at 10am. Then, I am going to a new pain management doc, and I am "trying" to be cautiously excited, but I think I'm not doing a good job. I am very hopeful that he will help, that he will shed some light on my situation. I'm starting to think that all this thigh pain isn't CMT afterall, none of my CMT buddies seem to have it, except for my sister. Could it be another complicatedly-named-genetic disorder we've never heard of?

This is the reason why I'm so hopeful: Pain Management Doc Helped Woman with Unthinkable Disease

So please wish me luck and say a little prayer as I gear up to meet this guy...may he have the right treatment for me and help me get over this pain...or even just help me get more energy to get through the day. I'll let you know how my appointment goes...and if he puts me on any crazy diet. (Please just don't ask me to eat bananas, celery, or olives.)

Just so this entry is not a total bummer, I'd like to point out totally unrelated positive news. My beloved orchid, a gift from a dear friend, is coming back to life. I thought I had lost her for good after she gave me 8 beautiful flowers this summer, but I came back home to see John took good care of her for me while I was gone and she'll be out to greet me again soon.

My beautiful orchid almost ready to come out. I can spot 4 future flowers :)

How she will look in a couple of weeks :)

Bittersweet Feeling...

It's been six and a half weeks since my 2nd surgery...time flies, I know. It only doesn't fly as you're actually living it and sitting on your bum so much. Now that I look back, where did the time go? It's been almost 7 months since my 1st surgery and I can still vividly remember everything about it. My year-long journey in search of a better quality of life with less pain is coming to an end.

I still remember my search for surgeons last November and December...almost 1 year ago to the date, a crazy surgeon told me that I was "beyond repair." Where were his manners? I bawled my eyes that night. And now I have two new feet. One that is already working beautifully and another that is already on its way. I started to walk again this week and tonight I even walked myself into a Chipotle...Delish! (Kalila, that was for you...lol)

I am feeling many things as I reflect about my 2010...the anxiety of not knowing what was going to happen, the happiness with the results, the boredom of sitting at home, feeling like I've accomplished what I set out to do, happy that I am going home tomorrow, and really sad that I am leaving my parents' house for good this time.

I know I am 29, but if it wasn't for this wonderful boy I fell in love with 6 years ago, I would never leave home. Think Monica and Rachel in Friends when Monica had to live with a boy!! Sure, my parents do drive me mad sometimes, but I love it here. So so much. And sure, John and I moved in together almost 2 years ago (LOL) but I've always been here so much...in 2009, I was commuting like a madwoman from CT to NJ for work and I'd sleep here at least twice a week and still go to church every week and in 2010 we moved further away but I've spent 4 months here, receiving the best care in the world and lots of TLC. So I am really excited to go to my "real" home tomorrow with John and continue living our lives, go house hunting and go back to work next month....all these things I've really been wanting to do and that I am blessed that I can do.

But now that my bags are packed and I know this time is for good I am sitting here writing this entry and crying. Goodbyes are never easy so it's just see you later (I can be so dramatic!). I'm sure my mom will be at my house this weekend to check up on me and bring me food.

Muito obrigado por tudo!
Eu te amo mainha e painho.

The 3 of us ready for round 2

The boy
(unfortunately I look much better in the pic above in the hospital...go figure!)

I am free again!!!!

I am soo relieved to have my cast off and to be able to put my foot down again! Now on to the next phase of my recovery...I'll be out of my walking boot by Thanksgiving! YAY!

Keep the Faith

About a year ago, I set out on this journey to take care of myself and my body, by having 2 (or possibly 4) painful surgeries that would help me relieve constant pain in the balls of my feet. At that time, I was anxious, I was afraid of the unknown, I was quitting my job because of a move to CT and to allow myself time to fully recover without worrying that I had to answer to someone, and I was basically diving in head first, not knowing how cold or rocky the water might be.

The only sure thing I had was faith that everything would be ok and that I had God on my side. I won't say it's been an easy year, it's been full of ups and downs, pain and relief, moments of tears and moments of laughter, going through the first procedure and seeing how successful it went and how well my foot is doing now. I've had a chance to stop and reflect on my life, had an opportunity to get closer and bond with my sisters, lean on my parents for their love and support, see John and I overcome another hurdle together which will continue to make us stronger for the future, and see who my true friends are.

As I approach the end of this journey, God's been giving me MANY reasons to smile (and Lord knows I need them)....I have a wonderful Caribbean cruise to look forward to on my birthday in March when I'll get to introduce my new feet to my favorite thing in the world - a beach! Then the most perfect job appears out of nowhere and they decide to wait for me to recover, and the latest gift He's given me...I get a letter from Social Security this weekend that they have made a decision that is fully favorable to me!!!!!!!!!!! This is just soooo unbelievable!! SS has denied my disability claim TWICE that I had to hire an attorney and we've been patiently waiting for a hearing date sometime next year!!! Then out of thin air, I get this news...There's no other explanation than the Big Guy upstairs showing me that even though sometimes we may be dealt a difficult hand in life, He is here for us and I am so grateful for that...

I just wanted to write this entry to say keep the faith, believe in something greater than yourself, and always have hope. If at times it seems He has forgotten us, then maybe it's just our turn to learn a lesson in life, and sure enough, in due time, things will appear out of nowhere to show us we've had our down so there's nowhere else to go but up!

I miss walking....

It's been one month since my surgery and I am officially over being in bed! I miss walking and putting my foot down sooo much and I just can't wait to be able to do it again! I have 9 more days til my next doctor visit when my cast will be off for good...and hopefully FOREVER!

I think this time I'm a little more impatient to get this process over with. Last time I knew I still had one more surgery to go and had endless time off. Now I have a wonderful job waiting for me and I can't wait to start! All my suits and work clothes have been sitting in the closet for a year waiting for this, but I'll definitely have to go out and buy new shoes. I can't wait to stop paying for health insurance on my own. I am excited to know that Christmas and New Year's will be paid holidays again this year. I can't wait to see money coming IN to my account instead of OUT (well, it'll still come out but you know what I mean).

It's funny that I haven't dreaded Mondays in a year, or looked forward to a Friday, or complained about the crappy weather to commute in, or had work drama. It's ironic that in life, at least my life, there's no half way. Before I was always on the go, always tired, always ready for the weekend or a vacation. And now I am too rested sometimes, sleep whatever time I want, wake up as late as I want, yet I'm dying to go back.

I'm sure I'll still complain about Mondays and still look forward to the weekends but I'll have a new appreciation for being ABLE to work, for being ABLE to drive when and where I want, for being INDEPENDENT. Plus this time around I'll be doing it with new feet, that don't hurt with every step...this is beyond exciting for me!!! I am so grateful that I've had the opportunity to take this time off but I am ready to get back to my life. CMT will always be there along the way, but I'm definitely not ready to completely stop so CMT better slow her butt down so I can still have a lot more productive years in my life.

Oh-em-Geeeeee!!!!

As I have mentioned in earlier entries, I started this blog out of convenience (aka laziness), so I wouldn't have to repeat the same stories to my sisters who live in Brazil, my parents and my boyfriend. I also intended for it to be my online diary, a means for me to remember this journey I embarked on to research and eventually undergo reconstructive foot surgery (TWICE!!).

I never imagined this blog would connect me with so many fellow CMT'ers, who I could share my stories with, who would cheer me on along the way, and give me so many helpful tips. I have met other bloggers who I love to follow and read their stories, become more involved with the CMT community, and made some new friends. I had no idea this amazing CMT blogsphere existed!!!

Never did I imagine in a million years that anyone would want to read my thoughts and ramblings - including some of the 5 people I mentioned above...not to mention any names, MOM, DAD, or JOHN!!! LOL.

Recently, Google added a "Stats" button to my blog toolbar and look where my blog is being read: US, Brazil, Canada, Australia, South Africa, UK, Latvia, India, Ireland, South Korea, New Zealand, Netherlands, Lebanon, France, and Russia. Oh-em-Geeeeee!!!!

Soooo cool!!

I am sooo excited about the response I've received and I'm truly humbled by it. I just wanted to say HI if you are reading this all the way across the world or just across the Hudson River. If we haven't "met" yet, feel free to reach out to me...I would LOVE to hear your story. You can email me at myjourneywithcmt@yahoo.com.

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....