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!!!

Time to Get Back to Exercising!!!!

I am still thankfully feeling amazing!!! This has been a great week...I have actually been a great housewife...cooked two dinners (John's been a happy man!), cleaned the entire house, hosted some dear friends from NJ for breakfast, and enjoyed a great weekend with Miss Pretty Shoes. I am so happy that this blog introduced us and I'm really happy to have her as a friend.

My mom came over on Friday night and she said she could see the change in me and my friends said they could see a different twinkle in my eye. Well, I am just so sooo sooooo grateful to be getting up in the morning with a clear head and without the burden of the pain in my legs. I just feel ready to get back to life!!!

So I want to start exercising again...and by exercising, I don't mean anything hardcore to lose weight or build muscles. I just want to get my body moving a little bit, get my blood circulation going, and just do a little to have even more energy. My dad is an eBay addict, so I recruited him with the task of finding me an exercise bike and the only requirement was that it was a recumbent exercise bike so I can lean back and enjoy my TV shows while riding so I won't even notice the time passing.

It took him no time to find this great bike, right in NYC, for a great price!!! Today we found a great place for it in our living room, right in front of the TV (gotta stay motivated) and I've already done my first exercise!!!! Now I want to get into a routine of waking up a few minutes early to start my day on the right note  :)

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!

The Fog Has Lifted...

As you've been able to tell from most entries I've written lately, I've been really struggling: with pain, with fatigue, with exhaustion. I've been on a journey in search of medical and spiritual help to find some relief. I am definitely a lot better now than when I started, but I have to say that a switch seems to have clicked over the last week that could make all the difference in the world.

About a month ago, I started on a new pain medication, in addition to increasing my daily dosage of Lyrica (for my nerve pain). My doctor said I could take 1-2 pills every 4 to 6 hours. Since I'm already popping enough pills as it is, I've been doing one pill with breakfast, lunch, and dinner. I've noticed some relief but nothing major. The last two weeks have been extremely busy for me personally and at work and I seriously crashed last Thursday night with an incredibly busy day and I was just BEYOND exhausted. Since I had to go to work on Friday, I decided to take two pills with dinner so maybe I could have a better night of sleep.

Well, I could've probably JUMPED off the bed in the morning if I wanted to because I just felt SO good. And that's not what I expected at all - I just thought I'd be completely sore and a zombie at work all day. Then I had another busy weekend and I decided to try my luck and take two pills with dinner on Sunday night and Monday night. I honestly can't even think of the right words to express how I feel....

I can't remember the last time I felt this light, this clear headed, this rested, this AWAKE. I feel as though I've been walking around with a veil of exhaustion over me that has suddenly lifted. I was able to wake up yesterday and today, even after not a full 8 hours of sleep, and not feel like I had an elephant sitting on top of my legs. I've been able to sit through meetings without yawning repeatedly. I've had two super busy days at work because one of our biggest events of the year is on Thursday and I'm not stressed. I'm just going through the motions and getting the work done.

Like I said, I can't remember the last time I have felt ANY of these things. I've been on survivor mode since going back to work and just struggling to make it through the week, always tired, always in pain. The pain has not completely gone away but I feel like the fog I've been in has been lifted. I am praying that this is a permanent change, but even if it's not, I am just BEYOND HAPPY that I've had these days to feel like my old self, I guess. It's been so long, I couldn't remember what it was like.

And honestly, the more I think about it, I can't really remember what my old self was like - before all of this got so much more intense and painful. If this is my new norm, I am excited to re-discover how I used to be. Maybe a little more calm, a little less on edge, much much happier. I so soooo needed this. I am SO thankful to God!!

I hope people who are healthy and read this entry don't take for granted what they have. I know we have SO much to be grateful for and sometimes it's not until you lose it that you realize how good you have it. I am LOVING this "new" old me. I can't wait to call my doctor tomorrow and tell him the amazing news!

Thank you for being there for me and for helping me along the way...

Thank you to another dear friend who has helped me so much!

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 :)

The Voices of Charcot-Marie-Tooth

Check out this great article on the NY Times site: Voices of CMT
And you can listen to their stories here: Listen

I want to say thank you to all of them for speaking about their lives with CMT.

So many parts of what they said resonate with me...the more awareness we can create, the bigger chances that hopefully one day everyone will know what this disease is and that they will find the cure for CMT in our lifetime :)

CMT Awareness Month 2011

Here is a sneak peak of the official CMT AWARENESS MONTH poster art. This was designed by some very talented high school students in Florida.

Let's continue spreading the word so CMT will stop being an "invisible" disease.

Out with the Old, Dizzy with the New...

The anti-inflammatory my surgeon prescribed really didn't help at all...I didn't feel any change the two weeks I was on it. When I saw my pain management doc he wanted me to give him a call in two weeks to follow up and see how/if the medicine was helping. We spoke on Tuesday and I asked him if we could switch from that one to the pain meds I had heard about. He gave me a new prescription which I started taking that night (more on that later).

I also told him how I don't feel that the 30+ pills I'm taking every day are helping me at all. I'm just as tired, exhausted, fatigued, and have no energy. It's been more than 2 months since I started taking them and if they're not helping me out, I'd rather get off them because 1. It's not fun taking so many pills and 2. They cost an arm and a leg! So we agreed that I'll call him in another 2 weeks to let him know how the new pain med is working out for me and at that time, he'll ask for all that blood work again. He wants to compare my first results with the new ones to see if there's any difference.

I started taking the new pain med on Tuesday night in conjunction with the anti-inflammatory. He wants me to take them together at first to try to get the best result possible and then if it works we can scale it back. Well, I have woken up all this week so rested and refreshed, like I'm not waking up with a huge weight over me, and the pain level has been significantly lower. It's actually been SOOOO amazing to wake up like how I would assume most human beings do.

The only downside has been the side effects, which has me really dizzy and groggy! It's been hard to be in meetings at work - falling asleep in front of your boss - NOT COOL! Oh and they also had a belated surprise birthday party planned for me on Wednesday and I felt so dizzy John picked me up so I spoiled the whole surprise...oops! I'm just hoping my body gets used to the meds so I don't have to stop taking them because I'm enjoying feeling lighter :)

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.

Lost ....

Introducing them to a hammock

I'm so glad that we were able to get away...our vacation was AMAZING! We got to see so many beautiful islands, I got to see my friend "the sun" again and it was nice to enjoy some time away from all the madness. Cruising is just the best and we are hooked for life! But even as we go away, I worried about the walking and standing to make sure I wouldn't be in too much pain. I also packed some meds so I could hopefully get some relief too.

Introducing them to the good life

A really strange thing happened with my left foot as we were away...I must've banged my big left toe one day going into the pool, and when I got out, there was blood gushing everywhere from the tip of my toe, which completely freaked me out. It actually looked like the pin in my toe was coming out (I know...totally gross!!!). After my shock passed, thankfully nothing was coming out and it stopped bleeding just as quickly as it started. Unfortunately this incident happened one more time while we were walking on a dock and I decided I'd just wear my water shoes the rest of the trip and not my flip flops.

Introducing them to the pool

This trip also made me think a lot about my life and the future. Sometimes it's not good to delve into all this thinking but it's hard to get yourself out once you've started it. And John and I started to talk about children...should we have them? Not out of fear to pass on CMT, more out of fear that I'll be too exhausted to take care of them. How will I manage? Also, we are SOOO not ready to be parents to any little gremlins yet, but what if we keep waiting and then I'll just get more and more tired?

And then, what about work? I'm sooo exhausted ALL the time, the 33809 pills I'm taking are not really helping and are not really giving me anymore energy. I also feel like my muscle and nerve pains are getting worse. How much longer can I do this? Should I ditch it and go for disability? But what about buying a house, going on vacations? I'm still so young and I truly enjoy working and the money doesn't hurt. I don't think I'm ready to give up working yet...

So many questions and so few answers. I've spent the last few days in an emotional funk but I think I'm finally finding my way out. I think dealing with constant chronic pain can have its ups and downs and it's hard to stay positive 100% of the time. I've had some really positive conversations this week with friends and especially my mom (Thanks for letting me talk your ear off for 2 hours and 10 minutes last night...LOL). I'm so grateful to have a strong faith in God because that's where I find the strength when I feel I'm running a little low on it.

For any CMT mommies who may read this...did you struggle with the thought of having children because of the fatigue factor? How did you work through that?

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!

Shoe Lover At Last!!!!

I finally get what the fuss is all about!!!!

 

Thanks to my "ugly feet," I've never been able to walk into a shoe store and buy as many shoes as I wanted. And that's not even talking about the cute or trendy section. I always had to go for the comfortable-and-definitely-not-the-most-attractive-shoes around. And even those, many times I had to return because my feet would hurt so much.

 

Since recovering from my second surgery, I've been SO excited to finally buy cute shoes and go on a shoe shopping spree. I might've gone a little overboard, but who cares? Being able to walk into DSW (of course I picked the largest store) and have SEVERAL cute shoes fit me was definitely a first, an exhilarating experience (possibly a shoe high?). I actually had to turn down some just because I wasn't ready to spend that much. And Easy Spirit online (unfortunately there are no stores in CT) has become my latest BFF. 

 

I am now the proud parent of several cute boots to wear in the winter and to work, and a few really really cute sandals for our Caribbean cruise in two weeks. I don't think I'll ever be able to do heels, even with new feet, but I'm very happy with my flat shoes.

 

Below is just a small sampling of them!!! My right foot was still a little swollen when I took these pics two weeks ago, that's why it doesn't go in all the way...and please don't mind my un-manicured feet, another habit that new feet will be breaking.

 

PS: Even though I have new feet, I am thinking that I may need more surgery....I'll write more about that next time.