Happy 2nd Anniversary!!!!

Time flies...I can't believe it's been 2 years since my first reconstructive surgery (and my first surgery EVER!)...So much has happened since. I actually got a little emotional re-reading this entry: http://myjourneywithcmt.blogspot.com/2010/04/i-did-it-i-really-really-did-it.html

It was almost like I was reading someone else's story...I am really grateful for that first surgery. It turns out it was the best of the three I had. My left foot really is the best compared to my right foot, which I still struggle with a pesky callus that refuses to completely go away.

Since then, I've worked and stopped working, got a house, got married, had 2 more surgeries, got braces, got to meet lots of new CMT friends, returned to physical therapy full-time, started pool therapy...and the list goes on and on. I am happy to celebrate this date and how far I've come since that time. Maybe I should treat myself to a celebratory cupcake today :)

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 :)

More Surgery?

I've been slacking on writing my entries BIG time, but life has been pretty chaotic since going back to work. Now that I work full-time I'm just tired all the time and I don't really have the extra energy. I've been on the supplements for 3 weeks now but I can't really tell if they're making a difference yet.

I am meeting with my surgeon again next month because I think I may need to have more surgery...unfortunately one of the calluses came back on both of my feet and it has started to bother me some. Not to the level it used to hurt before, but enough to make me question when I should go under the knife again. I am definitely open to the possibility...now that I've embarked on this journey and devoted so much time to getting this fixed, I'm seeing it through!

But let's wait and see what Dr. Feldman has to say first...I would definitely want to wait until next year...I need to take a breather from hospitals. He always said he thought it may take two surgeries to correct everything so this isn't totally a shocker. I guess it just took a while for me to walk enough for the calluses to show up again. And if I do go back in, I'm already thinking of fixing my toes this time so I'll be all done for good!

In the spirit of getting me some much needed rest and relaxation, we are leaving on our 12 day trip to the Southern Caribbean tomorrow!!!!!!! I really should be sleeping right now since I'm supposed to wake up in 4 hours...LOL...I'm really excited to introduce my new footsies to the sand and to wear the cute sandals I bought!!!! 

Hasta la vista!!!

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!

Snow Days

It's been a while since I wrote on here, but I'm a working woman again so I've been a lot more tired and had a LOT less free time to write. But today is a snow day here again and I am hanging out in the comfort on my home. Thankfully we have been hit with 3 storms over the last couple of weeks and that has gotten me two free days off work and one early dismissal!!! Now, normally I would not be a fan of all this snow, but I can definitely use a day off at home during the week.

And it's also been just absolutely beautiful in town too

I actually have some great foot updates lately too...My right foot has finally turned the corner and has gotten so much better. The first couple of weeks at work were tough with the swelling, having to keep it elevated so much, not being able to move very well and also not being able to rest like I did with my left foot. About 2 weeks ago, I started to ditch the boot and crutches at work (I haven't used them at home in a while but I was being safe in the office) and also started to wear sneakers. This week I started to wear real shoes, pretty new shoes that I've been buying and the swelling is down considerably. It's such a huge relief. I am feeling so much better and stronger. I have even started to cook again and taken out all the "old lady" paraphernalia out of my bathroom.

Next week I'm going back to see Dr. Kessler for our follow up visit. While everything has gotten so much better, the pain in my thighs and my lack of energy have not changed but I am very hopeful that he's gonna have a trick up his sleeve. I'll write more after my visit with him. For now, I'm gonna go make a cup of hot chocolate and sit on the couch under the blankets.

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

Swollen Much?

My foot kinda ballooned in size last night...I didn't really do much standing or walking, even used the old lady mobile chair at Wal-Mart. It also poured all day long and John seems to think that had an effect on it.

Today at work the balloon seemed to get a little bit bigger...check me out:

My foot has NEVER been this swollen

When I took my compression stocking off at lunch time to ice my foot, this kinda panicked me a bit. Not only was I having an extreme information overload morning and then to have to deal with this. So I called my surgeon's office and spoke to his nurse who said I should just continue to do what I'm doing: taking it easy, elevate and ice it. But she said to lose the compressing stocking. No problem! I don't like that thing anyway. If it doesn't get better, she wants me to come into the city on Thursday morning to see him. I hope I don't have to do that.

So when life gives you lemons, you improvise:

How I improvised to keep my foot elevated under my desk at all times

I also spoke to my boss and she was SOOO nice about it. She was actually adamant that I call my surgeon and said if I need to take any time off to go see my doctors or even if I need to take a week off just to sit at home that it's totally fine. I obviously don't wanna do that but let's see how it goes.

I just got home and the swelling is actually MUCH better. I hope it keeps going that way.