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!!!

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?