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 :)

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.

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

Weeks 6 and 7: Time to see my foot again...

Before things got better, they got a little worse. After my last entry, I spent another week not being able to sleep well. One night I went to bed at 7am (after being up all night) and the next day at 8am. The day after that, I slept from 2am-6am. Needless to say, I was starting to get a little desperate and considered taking sleeping pills. But I held off, because I knew I was going home to CT to spend Memorial Day weekend with John. Thankfully, that's all the medicine I needed. I've been sleeping great ever since and I am definitely caught up on my rest.

I went to see my surgeon yesterday for my 6-week follow up and to take the cast off. First, I was really grateful to have lived such a healthy life up til this point and to not really have had many medical problems as a child and teenager. My doctor is actually a pediatric surgeon and he was having a very busy day so the waiting room was full and my heart went out to those families. Little children and young teens in casts, a young boy with so much metal sticking out of his body from hip surgery, and a boy with such a serious condition I never even knew existed. It just made me sad because they should be outside running and enjoying this nice weather. But the upside is that hopefully they'll have a pain-free and easier adult life than I've had.

So it's finally my turn and what a relief it was to finally have my foot free and get a little more comfortable. But to be honest, I thought it looked worse than it did 4 weeks ago. My skin is soooo dry and my foot actually looked really dark, it's like one foot tanned and the other didn't (see pics below). Since I've never had surgery before this, I was a little worried but Dr. Feldman reassured me that it's healing just fine. The scariest thing is that he wants me to start walking on it NOW...and not little by little, to start immediately with the boot. And I'll have to wait on physical therapy. He wants me to see him again in 3 weeks and he'll recommend it then when I'm more used to walking. He also said to bring sneakers for my next appointment...oh boy!!!!

When we got home, I have to admit, I was soooo sooo scared to put my foot down. I had no idea what to expect; well actually, I expected to feel a lot of pain. You spend 6 weeks protecting your foot from harm and from touching anything that it's kind of scary when you're given the green light. Thankfully John and my mom were here for moral support. After the first few steps, it wasn't too bad at all, until John noticed I was cheating and putting most of my weight on my arms! LOL. Well, after I got caught, it still wasn't too bad. It felt good to finally walk again with two feet.

Here are a couple of pictures of my "fraternal" twins...it doesn't look great, but I'll post better pictures once the scabs go away:

Week 3: The Good, The Bad, and The Beautiful....

So much has happened since my last entry, I started writing this one a few times but quite honestly wasn't really inspired so I just waited to write it. And what do you know? It's 4am and I can't sleep so I thought I'd catch up ...

I was really looking forward to finally getting to meet my new foot as I was going to see my doctor for my follow up. John and my mom drove me into NYC for the appointment. I was really excited for this, a moment 5 years in the making. I could tell my doctor was really busy so he got right to work by taking off the first cast, which was a little scary. I know he is a great doctor and this was a minor thing to him, but when you see that little saw cutting so close to your leg it's a little nerve-wrecking. I honestly didn't know what to expect...wasn't sure how I would react. At first, it looked a little gross because the first thing I saw were the stitches and the blood on the cotton. And the more he peeled off, the more my absolutely gorgeous foot peeked out to say "Hello" to me. I was speechless (if you know me, you know those moments are hard to come by). And then a wave of emotions started to run through me...of happiness, of accomplishment, and a little weird because the foot was so beautiful and as a person who never had a beautiful foot, I felt like they attached someone else's foot onto my body. The arch was almost non-existent, my toes were perfect straight, and my foot was so long!!! I was a size 6.5 in high school and through the years, my foot has shrunken down to a size 5.5 - 5. My new foot is definitely at least one shoe size bigger!

DISCLAIMER: I'm going to post the pictures here and I hope they don't upset anyone. As the title of this blog reads, this is my journey and I've been waiting for these "after" pictures for a long time!

First, a recap...this is the picture of my old foot:
 







And this is my new beautiful foot ... despite all the bruising, swelling and my new cool scar:

I was so happy and overcome with emotions that I cried. Cried because a wave of memories washed over me, back to 2004 when I started my diagnosis process, searching for answers. Back to 2005 when the first doctor suggested surgery and I balked at the thought. I thought of all the pain that I've had with my calluses, of all the difficult shoe shopping trips I would force myself to go on to try to find a decent pair of shoes to wear to work, to a nice event, or just to be comfortable. Happy that this is a new beginning for me and that even though we are only at the start, this proved to me that I made the right decision. 

My doctor was extremely pleased with what he saw, he said he couldn't have done anything better or different than what he did. That the foot is healing beautifully, that the swelling is very normal for where we are. He actually seemed to admire his work of art a couple of times. I didn't mind at all because that work of art happens to be attached to my body :)  He also told me he thinks I am very brave, that when he met me he didn't think I would be doing as well as I am...something John has also said to me. I know there's a light insult in there somewhere lol...but I choose to see the compliment and that made me very happy.

I got a new cast and will be in it for another 4 weeks. I return to the doctor's office on June 1 when they will remove that and put me in a boot and hopefully I will be able to start putting some weight on my foot. We were so excited that we went out to eat to celebrate.

The good and the beautiful came together....the bad came when the doctor said I need to start weaning off the pain medication. Instead of a full pill every 6 hours, I should do half a pill and then eventually down to a quarter. That worked out well Tuesday and Wednesday but on Thursday night, not so much. The fact I had visitors all day may have contributed to the fact I was in so much pain at the end of the night, which led to a few more tears. So I took a full pill at night and another in the morning, and then back to a half pill and so far it's been ok. The bad is also that this medication is so strong that it had been suppressing my usual leg pains and with its decrease, my old friends have come back in full force so it's hard to find a position to be comfortable in. I plan on calling the doctor's office tomorrow to see if there's any medication I can substitute it with that may have the same positive effect on my body. 

Even with the bad, I am ecstatic and cannot wait til June 1 to get to see my new footsie again :)

Not Quite a Walk in the Park

Yesterday was an absolutely gorgeous day...sunny and in the 80's. I spent some of my day in bed looking out the window at the beautiful day wishing I could go out and enjoy it as if there was nothing keeping me from doing that.

Thankfully, my dad was thinking the same thing. He was so adorable and got out of work early to come home to take me to the park. I was really excited to be able to enjoy the sun a little. However, I didn't realize what a mission it would be to go out. As my mom put it, it felt like they were going out with a baby (aka ME) with all the preparation and stuff needed just for us to go out. My dad went and packed the wheelchair in the trunk, then all my essentials went in my mom's purse (chapstick, phone, camera, wallet and meds), we needed my comfy pillow to support my foot during the car ride, water so I could take my pain meds and the walker so I could get to the stairs.

I am really phobic of stairs so I would never even attempt to go down on crutches. I got myself to the top of the stairs on my walker and then dropped down to go on my butt. Going down wasn't so bad....coming up was another story.

It was really nice going to the park though. I love this time of year when everyone comes out of hiding. It was great to be out and get some fresh air. As my dad pushed me around, it was a little weird to get so many stares. People, have you never seen anybody in a cast before? Geez Louise!!! Even though it was nice to be out, the body tires easily so at the end of the first lap I was ready to come home.

Arriving at home, I brought myself up the stairs by sitting on them again and that's when the exhaustion really hit me. I had to go up slower and take a couple breaks here and there. I felt triumphant when I got to the top of stairs and rewarded myself by throwing my body onto the bed and relaxing for a while.

And today...hello sore muscles!!! It seriously feels like I went to the gym and lifted weights (come to think of it, I did lift my 120 lb. body up the stairs). Everything is sore! Owwww. Even though it hurts I'm proud of myself for being able to do it and I definitely need to keep up my physical therapy and even use the stairs more to build up some strength.

Obviously it was so hard because this was the first time. I'm wondering if I will actually for once in my life have some nice muscles in my arms at the end of this. I know it's too early to tell but one can dream....