When Things Were Simpler...

In our society, progress is something that has propelled us onto bigger, better and easier things. Being an 80's child, I remember when things were a lot simpler...before cell phones, computers, iPads, wifi, etc. It was a simpler time when kids were kids longer, when we played outside until our moms called us in for dinner, when we dropped by friends and family's houses without having to call first, when we rode our bikes without helmets...I love and am totally addicted to the comforts of modern life, but there are times when I miss when things were less complicated.

When things were really simple...

When things were simpler, I was just a clumsy girl who fell a lot but I walked with no problems, I wore shoes when I felt like it, I danced to my favorite bands all night long and I didn't have a care in the world beyond my sisters annoying me or wanting to borrow my clothes all the time. When things were simpler, life was uncomplicated, health wasn't something I particularly thought of very often, because I had it.

It's been almost eight years since my CMT diagnosis and easily over ten since my symptoms started to show and really bother me. Eight years isn't exactly a long time in the big scheme of things: it's two World Cups, two presidential terms, two Olympic games, it's going through high school and college...but in the scheme of my life, eight years has changed things in ways I would have never expected.

In my personal life, my sisters moved back to Brazil, I graduated college, met and married my best friend, moved from NJ to CT, became a first time homeowner, and blossomed into an adult. In my CMT life, things changed drastically. I went from ignoring my diagnosis for a couple of years to a hot pursuit of answers and medical help. I had two reconstructive surgeries on my feet and another minor surgery in search of pain relief. I've met a slew of doctors, surgeons, and neurologists...some of which helped me immensely and others who upset me more than they'll ever know for things said without thinking. I progressed from an active and outgoing girl who loved to dance to a girl who doesn't go out often without fully analyzing where, when, how long, how far, who is going and if there is seating. I went from avoiding medication at all costs to not being able to deal with my pain without them. I went from regular walking to less and less walking, to the wheelchair and now to the scooter.


Life with CMT is full of ups and downs, both physically and emotionally. Just as you are getting comfortable with a change in your condition, things change without your noticing and you have to adjust your mindset. Some adjustments are easier to accept than others. Sometimes it feels like you're in a constant state of mourning...mourning things you could do that you no longer can, mourning the person you used to be and adjusting to who you are becoming. Even mourning the future...the dreaded how-will-I-be-in-five-years question. It's never a good idea to dwell on these changes too much...it brings on too many feelings, and most of them are not the rainbow-filled, peaches and cream kind. Sometimes it is good to acknowledge those feelings though, throw a heck of a pity party for yourself, and then move on.

There are so many things I miss...things that I'm sure most people take for granted. Taking a walk at the beach, walking the mall, dancing the night away...But I have also realized that I am no longer the same person. I am more mature, I appreciate the little things in life, I am grateful for the days when life is good and CMT is taking a hike, I sympathize with the pain of others in a way I never could before, I am so grateful for the people in my life who are such a strong support system, and I am thankful to God, that even though He gave me an obstacle in life, it's one I can endure and He gave me as many cushions as He probably could without taking away the lesson.

When things started to get complicated...

I think CMT'ers are much stronger people than they get credit for. We are all struggling with this invisible condition that many people aren't even aware of and we are trying to do it all with a smile on our faces. It's a constant battle between body and mind...our body wants to give up and our minds are refusing to let it. Progress hasn't been a friend to my body, but I pray that this same progress leads researchers and scientists towards a treatment that will help us all.

Yes, I'm Still Alive!

I can't believe it's been almost 3 months since I last wrote on my blog. I have had a million things to write about, but life kinda got in the way. I will keep this short so I don't bore you to death or quit before I can finish it...

I have had an insane summer...surgery in July, return to work after two weeks, then John and I were very blessed to find our perfect home and purchase it in the beginning of August, spent that month renovating it, moved in on the weekend that "Irene" decided to hit Connecticut, lost power for one week so we had to keep going back and forth to our empty apartment just to shower and use the fridge, and on top of all that, I have been planning 7 work events for September and October. If you got tired just reading this, imagine living it, with a condition that already exhausts you for doing the smallest tasks?

Oh and did I mention how I totally missed CMT Awareness Month? Really annoyed about that...was just too insane to think or write about it...

Unfortunately, my body couldn't take it anymore and crashed in a really bad way a little over two weeks ago and it was my worst experience with CMT to date...I seriously considered going to the hospital because even my strongest "back-up" pain pills did not work. Eventually, my doctor was able to help me figure out what medicine might work, but it's now almost 3 weeks later and I feel like I'm still recovering.

To make matters even more "interesting" my job decided that if I could no longer attend the events (I asked to not attend any event in the month of October for fear of the pain flaring up again), which are a major part of my job, that they might have to replace me!!!!! STUNNED SILENCE! Thankfully, that situation worked itself out for the best...they really love me there and did not want to see me go so they've offered me a part-time position where I get to leave work at 2:30pm everyday with a very reasonable package. Even though we don't understand His plans all the time, things seem to have a way of working themselves out sometimes...

My new schedule will begin this Monday and I CANNOT wait to get home early, get some rest, and then actually try to live a little. Hopefully, I'll be able to come back and write lots more because this is the condensed version...I have a lot more to say about everything...but let's wrap it up here and hopefully I'll return very shortly :)

Back to work!

It's time to go back to work and it feels as if I've been off for months...I went for my follow up on Thursday and thankfully things are looking good. My surgeon is really pleased with the surgery and the recovery has gone really well. Besides some swelling, my foot's doing great - I don't even need physical therapy. As you can see in the pic, the cut is a lot smaller than the others and thankfully it's off to the side of my foot so it doesn't hurt when I walk. Now we just have to wait for the swelling to go down and hope to see the results in about 4 to 6 weeks.

My biggest problem throughout recovery is the same as always, my leg pain. Unfortunately, the medicine that I was so excited about hasn't been working as well as it was before everything got messed up...I am hoping that going back to my routine, things will fall into place...what a sweet life it was when it worked!

On a completely unrelated note, my mom sent me this amazing video .... we should all strive to be a little more like this, help our brother/sister in need when they are down...click HERE to see.

Up and About....

Thankfully everything went really well with my surgery on Friday...the hardest thing about the procedure was waking up when it was time to go home. I was just so comfortable and warm that the nurse that kept trying to wake me up really annoyed me. My Dr. was really pleased with the surgery and said everything went great. I guess compared to the two uber-complicated procedures last year, you could tell this was a piece of cake when we were in the car and driving home at 11:30am of the same day!!!!

I slept on and off all day Friday, which really messed up my body clock; I could barely sleep that night. And since my first day/nights have always been the hardest, this also couldn't be any different, even if on a smaller scale. Part of the reason I couldn't sleep is that the nerve on my right callus kept "zinging" me all night long, it was like aftershocks over and over that couldn't allow me to fall asleep.

Slowly but surely!

Day 2 went much better and I fought to stay awake all day. As per doctor's orders, I put on shoes and moved around the house a little bit. He said I could use crutches, but since I have no balance I chose to go with my good friend "The Walker." It was a little strange to walk so quickly post-op but at the same time I'm so relieved things are so much easier this time around. I definitely couldn't deal with 6 weeks in a cast right now. Night 2 went much better than the first and was very restful and today I'm catching up on my emails and all my reading...

I want to share something I just found out about through a great CMT group on Facebook. It was my first time reading The Spoon Theory but it definitely won't be the last. Christine Miserandino describes her "invisible disease" in a way that really connected with me and maybe in a way that I haven't been able to express to others before. So please take a few minutes and read The Spoon Theory HERE.

What do you think?

Time for Surgery #3!!

As ready as I am for my surgery tomorrow, I sure was NOT ready for the little surprise I got this morning. As I was showering to get ready for work, I leaned in to put the conditioner down and slipped on something....just then, I saw my life flash before my eyes and everything went in slow motion. LOL. Ok it wasn't really this dramatic but it WAS very scary. Since I don't have any balance, I completely fell out of my tub and since there was NOTHING to hold on to, I brought down the curtain and the conditioner that was in my hand flew everywhere.

I have to be thankful that John was home and rushed to help me right away and also besides a small cut on my left foot and a lot of soreness, I'm ok. This never happened to me before and now it's a must to install those "old people" bars in my shower and maybe have a shower door instead of curtains. At least I would fall inside of the shower instead of out. I called my new surgeon just to give him a heads up but it's not enough damage to stop the surgery...thank goodness! I'm ready to get this show on the road.

I spoke to the hospital a little while ago and I'm the first appointment in the am so we have to be there at 6am and the surgery will be at 7:30am.

Thanks for all the well wishes and I'll see you on the other side :)

Already Next Friday...

Since my last post, I went back to the medication that was working for me and thankfully have been feeling fine again. I'm unfortunately lacking sleep because John and I are on opposite schedules...he's on the 4pm to midnight shift so the only way we can actually see each other are my days off or if I wait up for him...and it just sucks living with someone and not seeing them. So besides being sleep deprived, all else is good. I've been exercising on my bike about 5-6 times a week for 15 minutes...enough to get some movement in my body.

Today I went to the hospital for my pre-testing for the surgery next week. I cannot believe how quickly the time went by. Once again, I'm ready and excited to get this over with. The great thing about this surgery is how much simpler it will be compared to the last one: no hospital stay needed, only local anesthesia, no hard cast, and should be moving fine within just a couple of days. I really hope this procedure does the trick and my stubborn callus goes away. I guess only time will tell....

I'm also looking forward to slowing down to recover for a week or two, spend some time with my parents, see some of my Jersey friends again, and enjoy lots of mom-made meals...those are the BEST kind! I'll keep ya'll posted!!! All prayers and good wishes are welcome :)

Change of Meds...NOT a Good Idea!!!!

I had a follow up call with my pain management doc on Wednesday and told him the amazing news of how I've been feeling so great, that I finally figured out how to take the pain meds in just the right dosage for me, how I'm so happy to be waking up and feeling so well. And I also had to tell him that I stopped taking all supplements because I started having some freak rashes all over my body and I wasn't sure what it was...it turns out they were bug bites, not supplements.

While he was obviously happy for me, he was a bit concerned about the blood test results that he received for some tests I did a couple of weeks ago. The levels for my energy are extremely low...scary low, as he put it. And even though I've been feeling so great, it really is just the Tramadol getting me through the day. Some of my other levels are also really really low so he recommended that I continue to take some of the supplements, which was fine by me. I just didn't wanna go back to taking 33 pills a day.

Initially, he prescribed me the short-acting type of Tramadol, the type you have to take every 4 to 6 hours. He explained that if that worked, we could try the long-acting form so I would only have to take 1 pill a day instead of 4. Sounds great in theory! When we spoke on Wednesday, he asked me to try the long-acting form and I noticed right away on Thursday that I did not feel the same, it did not give me the same relief. But I do try to give all these meds I try the benefit of a doubt, so I tried taking it again on Thursday night...and was unable to go to work on Friday :(

I just woke up so weak and in SO MUCH pain, that it took all the energy in me just to shower. I hate calling out sick, especially when I need my sick days next month for my surgery! I didn't have any energy all day long to do anything but sit/sleep on the couch. I felt better as the day went along but got worse again at night. I called his office and pretty much told them I would take 2 long-acting pills tonight and if I wake up a mess again tomorrow I'm going back to what I was doing before because it was clearly working.

It's so crazy that I've been feeling relief for such a short period of time, and yet, it's almost like I forgot all about how things used to be "before." I honestly can't even tell you if today's "episode" was better or worse than my every day life before I figured out my Tramadol dosage. And I used to get up in the morning every day feeling a mess and manage getting out the door and today it literally got the best of me.

I am just so THANKFUL for medicine and all its advances because here I am today reeling but hopefully this will be figured out soon and I'll have the relief that I need. I have to admit that it was a scary day to feel so debilitated, to be in so much pain and to be unable to do anything for myself. Hopefully this won't last!!!

It's still working =)

I have now been taking the two pain pills at night for two weeks and it's working GREAT!!!! I have had two really intense weeks at work with two major events that I was organizing back to back and this was sooo helpful!!! I'd go to sleep exhausted and wake up new.

The only day when I didn't wake up feeling very well was yesterday, but Friday was an extremely tiring day at work. For starters, I was up at 4:30am and hit the road by 5:30am to go set up the event. And then I was on my feet for most of the morning and part of the afternoon. Even a regular human being would be tired, let alone a human being with CMT.

I'm really excited to have a nice long Memorial Day weekend next week. And I'm really excited that my buddy Jess will be coming up to visit, hang out and get our surgery stories up to date!

Surgeon #2

Today has been a really crazy day and I'm glad it's coming to an end. I'm even happier because now I have some more conclusive answers about my surgery situation. Quick update - callus on right foot is worse and bigger than callus on left foot and bothering me a lot more. I have been really tired and exhausted, which is the reason why my entries keep dwindling. I still don't think the supplements are helping me and I'm doing blood work to get some more results.

So last night I slept at my parents' house and my mom and I went into the city this morning to meet the doctor referred by Dr. Feldman for a second opinion. I had a great first impression, liked him right away, which is always a great sign. He reviewed all the information I brought, examined me, then stepped out of the room. When he came back, he told me he called Dr. Feldman on his cell phone and they discussed my case already. More brownie points!

So he said we had two options. The simplest and the one he recommends is to just shave off some of the fifth metatarsal's bone, which should relieve some of the pressure on the callus of my right foot. Should be a fairly simple surgery, local anesthesia and possibly not even one night in the hospital. Would probably go right into a walking boot and return to work fairly quickly. Option #2 would be to break the fifth metatarsal bone and raise it to relieve pressure. But then he said he wasn't sure if it wouldn't create a problem for the fourth metatarsal (Oy vey!). This would also be a much more invasive procedure with longer recovery. And he doesn't think pinning all my toes would help at all, so as of now they stay "hammered."

So obviously I chose option 1, and we agreed that if it didn't get much better, we can always consider option 2 in the future. After this I will also try wearing orthotics at least while I'm at work so my feet won't feel so much pressure while I'm running around. For now I think we'll just ignore my left foot...it's hurting a bit but I think I can live with it. I was also surprised to know that Surgeon #2 will perform this surgery, instead of Dr. Feldman. Not that it's a problem, I just wasn't expecting it. Oh that reminds me - I should figure out how this works for my insurance since he's out of network.

Once I got to work I had a chat with the powers that be and it looks like I'll be able to schedule something for the beginning of July and possibly take off two weeks. And this would mean that I may still be able to take my family trip in November!!!!!!!!!!!! Which is really what I'm most excited about! This last part hasn't been approved yet but one can dream...

Happy 1st Birthday to My Left Foot!!!!

Oh my....I can't believe it's been one year and at the same time it feels like it happened a lifetime ago. It's crazy to look back and compare where I was last year to where my life is now...well, there have been many positive changes, my feet are much better, I am back to work and living life. But it's the same because one of the calluses came back on each foot and there is a very big possibility of two more surgeries, one on each footsie. Thankfully these would be a lot simpler and my recovery would be much easier. Also, this time I am working so I'll hopefully be getting paid while I take the time to do this. My follow up with the surgeon who will give a second opinion is on May 3, so I'll know more then.

This week was a very positive one because I was able to schedule that follow up appointment and I officially became a registered member of the Muscular Dystrophy Association (MDA). They offer services to people who are diagnosed with 43 neuromuscular diseases. Their mission is to conquer neuromuscular diseases and fund research projects worldwide to help people like me have a better life. In February 2011 they were awarded 44 new research projects and $13.5 million. So clearly a cure is just around the corner. One of these days, in the near future, I'll stop complaining about pain, fatigue, exhaustion...I can't wait :)

I will take today to reflect about my journey and be thankful for the opportunity I had to dedicate some time of my life to get better and get healthier. For the doctors who safely operated on me. For my family who supported me every step of the way. For my love who was there for me. For my faith that kept me strong at the times when I most needed it. For my friends who kept me company and brought me goodies. I definitely have a lot to be grateful for! 

This was the before...

and this is the pretty after :)

Maybe It's Not Over Yet...

I went for my follow up with Dr. Feldman last week to see about the possibility of more surgery. It had been so long since I actually "walked" myself in that the receptionist was shocked (and happy for me, of course)! I was a little ticked off because I have literally never waited so much there...I was "Next" five times, it felt like he kept going in to see everyone else but me...anyway, moving on! When I finally did get to see Dr. Feldman he really couldn't explain why my outer calluses are back (one per foot). He had me walk back and forth a couple of times and said how my feet are perfectly aligned and how effective the first surgeries were.

He ended up coming to the conclusion that the outer ball of my foot is really exposed because we didn't pin those toes and they are still so bent that they naturally put pressure on that part of my foot. The problem seems to be completely fixed on the inner callus that used to be right below my big toe, which now has the metal pin in it. But before he can say that's what's really going on, he wants me to see another doctor at the hospital for a 2nd opinion who's a super genius in the field. He did say that he doesn't think the 3rd and 4th surgeries wouldn't be as intense as the first two. I would probably go straight into a walking cast and able to move. That would be awesome!

He then prescribed an orthotic type thing to wear in my shoes and see how that would work. I'm not against doing this for a short period of time but the whole reason I started this journey was to find "permanent" relief. I use the term permanent loosely since we know CMT is progressive and degenerative, but you get my point. Orthotics only work in certain shoes, won't work if I wanna wear flip flops or if I'm barefoot. And quite honestly, I've had quite a few that haven't helped me at all.

I also pretty much begged for pain meds and he agreed to give me an anti-inflammatory that should be good for the pain. I've been taking it for a week and I'm not really sure how much it's helping but I'm gonna keep trying. If this one doesn't work, I have another one in mind.

I told my new job about the possibility of more surgery and as much as "they want me to do what's best for me" I know they were not thrilled. It's too bad but it's not like I planned this. I also may have to scrap my planned visit to see my sisters and family in Brazil at the end of the year, which I'm really bummed about. But I'm really dedicated to work on these feet and have a better quality of life. I'm just gonna have to focus on the fact we just took an amazing vacation and that'll have to do for now.

My Journey Through Surgery

I met Tim like most other CMT'ers I've met - through the amazing world of the internet. Tim's story is actually very similar to mine, we're the same age, both have CMT Type 1A and he is getting ready to have his reconstructive foot surgery this week. He asked me to write an entry for his blog, which you can see below or by clicking here.

You can also check out his blog here: CMT creates: music. Good luck with your surgery Tim!!
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A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.

I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.

I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.

Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.

Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.

Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.

I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!

Happy Holidays!!!

Once again I can't believe it's already been 3 months since my 2nd surgery (and 8 months since my first). I have to say the last couple weeks have been a little challenging adjusting to work again but I think my foot is finally getting the memo. After last week's inching debacle, I started to take more care of my foot and he started to behave more. I am keeping it elevated 80% of my day at work, icing it at least three times at work, and also taking 2 ginger tablets a day (my surgeon's nurse said she has heard this is a homeopathic way of treating swelling). My foot's been a little swollen but sooo much better than it was. I'm even feeling brave enough to possibly wear sneakers to the office one day next week so see how it behaves.

I also can't believe this year is over. 2010's been fun (NOT!) but I am ready for 2011. This has been one of the most difficult years of my life but one that has taught me many lessons of strength, (a little) patience, learning to lean and depend on others, and most importantly, gratitude. But I am so excited for 2011...a new year ahead of me, with new feet, a new job, a fun trip in 2 months, I'll be 30 in March, hopefully a first time home buyer at some point, the possibilities are endless.

Just wanna wish everyone a very Merry Christmas and a Happy New Year.

Thank you for all the help this year

And for seeing me through these 2 surgeries

New Pics of My Footsie

So today I completed the blood work that my pain management doc requested. In total, 22 vials of blood. My little veins need some time to recover. LOL. And the final thing will be my 6-hour peeing session on Monday. Can't wait to hear the results from all these tests.

In the meantime, here are some new pics of my footsie, all healed but still swollen. I'm still taking it very easy because it's still hurting if I walk too much.

Two new feet

Two old feet

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!

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!)

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!