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 :)
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.
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 :)
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...
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.
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!!!!
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!!
----------------------------------------------------------------- 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!
About a year ago, I set out on this journey to take care of myself and my body, by having 2 (or possibly 4) painful surgeries that would help me relieve constant pain in the balls of my feet. At that time, I was anxious, I was afraid of the unknown, I was quitting my job because of a move to CT and to allow myself time to fully recover without worrying that I had to answer to someone, and I was basically diving in head first, not knowing how cold or rocky the water might be.
The only sure thing I had was faith that everything would be ok and that I had God on my side. I won't say it's been an easy year, it's been full of ups and downs, pain and relief, moments of tears and moments of laughter, going through the first procedure and seeing how successful it went and how well my foot is doing now. I've had a chance to stop and reflect on my life, had an opportunity to get closer and bond with my sisters, lean on my parents for their love and support, see John and I overcome another hurdle together which will continue to make us stronger for the future, and see who my true friends are.
As I approach the end of this journey, God's been giving me MANY reasons to smile (and Lord knows I need them)....I have a wonderful Caribbean cruise to look forward to on my birthday in March when I'll get to introduce my new feet to my favorite thing in the world - a beach! Then the most perfect job appears out of nowhere and they decide to wait for me to recover, and the latest gift He's given me...I get a letter from Social Security this weekend that they have made a decision that is fully favorable to me!!!!!!!!!!! This is just soooo unbelievable!! SS has denied my disability claim TWICE that I had to hire an attorney and we've been patiently waiting for a hearing date sometime next year!!! Then out of thin air, I get this news...There's no other explanation than the Big Guy upstairs showing me that even though sometimes we may be dealt a difficult hand in life, He is here for us and I am so grateful for that...
I just wanted to write this entry to say keep the faith, believe in something greater than yourself, and always have hope. If at times it seems He has forgotten us, then maybe it's just our turn to learn a lesson in life, and sure enough, in due time, things will appear out of nowhere to show us we've had our down so there's nowhere else to go but up!
This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.
Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.
Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?
And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.
But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.
Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.
I was waiting for a date to finally write this entry...March 17. But so much happened while I waited that now I have lots more to write about.
When I was diagnosed with CMT in 2005, I was immediately referred to Dr. G, a doctor with the Hospital for Joint Diseases. At the time, I didn't like him because he had a one-track mind: SURGERY! Back then, I was certainly not ready. I wasn't even expecting to hear I had a genetic neurological condition, let alone talk about getting surgery! So I pushed the thought to the back of my mind. Over the last couple of years, my pain has certainly increased exponentially and more and more I had to think of that option that I pushed to the back of my mind.
Things in life happen for a reason because I was definitely not thinking surgery in 2009. But it's when I moved to Stamford, CT with John and commuted to/from work in NJ a couple times a week and my pain definitely hit a peak. So over the summer, I started to think that I definitely wouldn't be able to commute for too much longer and I started looking at jobs in CT. This also happens to be one of the worst economic times our country is going through so it was slim pickings and even then, hard to get a call back or interviews.
Sooo brilliant mind that I am, I started thinking that if I was going to be either unemployed or settling for a job that I would be bored with, I might as well consider the thing I've been avoiding all these years! There are many reasons to avoid this surgery, which is why I have done it for so long: it's going to take a huge chunk of time to recover so I obviously couldn't do it while employed, painful, scary, very complicated procedure, what if it's worse after??
I started doing some research on doctors and called Dr. G again, not because I loved the guy but because I knew he was good. I also scheduled a few other appointments with different doctors. My first appointment was with a doctor who will remain nameless in NJ, who just does not have the experience with CMT or this type of procedure. When we met with him, he told me that it would be an extremely complicated surgery and he wasn't sure if I wasn't beyond repair. OMG I went home and cried that night and the next day...thinking that I waited all these years and maybe I waited too long and lost my opportunity. I've always thought of this as a last resort and now what would I do?
Thankfully my appointment with Dr. G was after this and he was extremely confident about the procedure. He has dealt with TONS of CMT patients before and done several surgeries similar to this one. Not only was I sure he was the man for the job, but I actually liked him now. I guess now he and I were both on the same page. He gave me the name of one his patients who I could contact and talk to about her experience (Thanks Tecile for this tip!). At this meeting sometime in November 2009, we took new x-rays which showed the progression of the problem. There's a new problem with my right ankle I wasn't even aware about. Dr. G. warned me that there are so many things that need to get fixed that he wouldn't be able to fix it all at once with one surgery because it would be too stressful on my foot and that I may need to go back in a couple of years from now to finish it. To sum it up, the problems are: extremely high arches, hammer toes, foot drop, foot turning inwards, problem with right ankle and other issues with nerves and muscles that are medical terms I can't remember LOL. Seriously I am keeping track of plenty!
So I scheduled a follow up with Dr. G for January 12 after he got back from his vacation for a final consultation and set up the surgery date and I also planned to meet with his patient that morning. It was great to meet with her and see how "cute" her foot is now...sorry, but when you live with ugly feet your whole life, it's kind of exciting to get new cute ones (and it's also better to focus on this stuff than on the stuff I'll talk about in a second). It was extremely helpful to meet with her to know what to expect pre/post-op and to hear about her recovery. I definitely found out some things that I definitely wasn't expecting...
- How I won't be able to shower or go to the bathroom while I'm in the hospital and possibly my first week at home. YUCK! I already feel bad for my mom who will be taking care of me...
- How hairy my leg will be when we take the cast off
- How painful the recovery process will be
- The length of time in recovery which is not set in stone for any patient
- Great! I really should've written this in January because now it's almost a month later and I can't remember all the things she told me...oh well...I'm sure it'll come back to me at some point.
After meeting with her, I headed downtown to meet with Dr. G. Since he was just recently back from vacation, he said he couldn't give me a date yet and would get back to me the following week. He also gave me some interesting pointers. He said I should not pity myself and that I need to actively work in my recovery. That the more of a fighter I am and the more I push myself (as advised by my physical therapists), the quicker my recovery can be. This was great to hear because 1. I don't pity myself, even though I'm sure I'll have my moments and 2. I had not even thought of being "active" in my recovery and how important that will be for me. The one thing he said that stayed with me (how could it not?) is that this will be really painful, to the point that I will probably come to regret having the surgery. Thanks!!! At least I am going in ready for the worst!
Unfortunately, when he called me the following week, it was to tell me he has made a very important decision in his career...that he will be retiring from surgery. That he will continue to work but will definitely be scaling down his responsibilities. That he will be happy to stand in the surgery room with whomever I choose, but he will not be the main surgeon. That if I was only having 1, he would be more than happy to make an exception but since I would be having 2 surgeries now and possibly more in the future, he thought I would be better off with someone who would follow my case from beginning to end....which I agree. I was just really disappointed that he waited so long to tell me. I had already finished all my research and chosen him and I had just been at his office the week before and he "forgot" to mention this very important fact. But he said he felt really bad and he would make some calls to doctors he trusted and discuss my case.
I obviously worried and stressed but thankfully we were leaving on a vacation to Mexico in 3 days so I decided I would just deal with it once I got back and put it off my mind. We had an amazing time on our vacation but I definitely had some reminders of why I'm so ready to have this done. Like how difficult it was to get out of the beach because there were so many sea shells in the sand that I needed help, or how I have to walk to the edge of the pool in my flip flops and immediately put them on once I get out because I can't stand on the ground, or even how hard it was to just stand in the pool floor, or how exhausted I was from dancing two nights in a row that I had to stay in the room and rest for a few hours before enjoying the day...many little things that people take for granted. But I will be so grateful when these things are no longer obstacles to overcome. Sometimes we have to go through situations to make us appreciate them. Maybe I wouldn't have valued these things had I been given them naturally, maybe I needed an extra push to realize one of the most amazing things that we can have in our lives: health.
So we get back to the US and Dr. G. recommended a new surgeon who also works for the Hospital for Joint Diseases. I call to make an appointment and he's in Haiti helping out with their relief efforts (I already like this guy!). John and I drove into the city on February 4 to meet with Dr. F. (who I should mention is good looking =) John says he looks like Nicolas Cage but I definitely think he looks cuter! LOL. Immediately we can tell he knows what he's talking about, that he's just as confident about doing this surgery, that he can really help me with my feet. Also, he's the Chief of Surgery for one of the departments at the hospital. Not bad!
His main concern is the pain I have on my thighs that I can't get rid of. He's not sure, as no doctor has been sure up to now, that the surgery will improve that pain at all. He thinks it's related to my hips so we do x-rays and everything looks normal. Doofus me! I completely forgot to tell him I broke my hips when I was 5. I didn't just forget to tell him, I forgot it happened! LOL..my mom reminded me as soon as I left the appointment and I had to send him an email. His suggestion is to try a lidocaine injection directly into my hips (sounds painful and I'm not sure of all the details here) to see if that will work. He also thinks I could try Aleve to see if it helps (which I never tried for that reason) but I won't be able to do that as we get closer to surgery because it thins your blood too much and that could be a risk during the surgery.
He will keep trying to help me find something that helps with this pain that refuses to go away because this is not common in the patients he usually sees.
He stresses some of the same facts I've already heard but he said something different that I liked. He thinks that depending on my recovery, we can try going in 6 weeks after the first surgery to do more surgery on the same foot to finish working on all the problems. I think this is so much better than doing it a couple years from now when I'll be back to a regular life. Since I am kind of stopping my life specifically for this surgery, let's get it all out of the way now. I really like the new doc, his staff, and I'm happy that he's younger and hopefully I'll be able to have him follow my progress for years to come.
Sooooo...March 17...St. Patrick's Day! 6 weeks. So much to do until then, we're moving to Shelton this week so I want to make sure we are settled, babies' birthday parties, my birthday...
I know John and my parents are ready to help me in this new chapter of my life. Although we all know it will be a difficult one, I think it will come with great rewards. I am thankful for all the support I have gotten, the phone calls, emails, text messages. For my mom, who will be the best nurse anybody can ever ask for. I thank you in advance because I know this will be just as hard on you, if not harder, to see me like that. For my dad, who may have to carry me around. For John, who gives me so much calm and strength. For my sisters, I wish you could be here!
I have to say that I can't wait to look back on this time...when I am walking around hardwood floors barefoot and wearing cute shoes and not tripping all the time (I am clumsy so we'll have to see about that).
So in preparation for the big day, I'm going to skip all the negative and painful things I could be thinking about and I'm going to focus on the good things I'm looking forward to doing.
The reason I decided to write about this is because I have a terrible memory so I thought I should get a diary, I would like to look back on this a year or two from now and remember where I was. But I think I would be too lazy to write it down so typing is easier. Well, since I'm gonna type it then I would like to share it with my sisters, parents, and boyfriend...so why not just do this? I'm very comfortable talking about this stuff and for me, talking helps. It's definitely therapeutic. So here it is...
I feel that I have been a very fortunate and happy person. Fortunate to have amazing parents who raised my sisters and I in a happy home. Blessed to have a great belief system and faith in God. So happy to have found someone who loves and supports me.
We had a great childhood, lots of time playing on the streets with friends, going to the beach, being at grandma’s house with all the crazy laughter and loudness, even hanging out at the farm here and there...building a solid foundation that would prepare us for the obstacles later in life.
We moved to the US in 1996, in the middle of my teen years. I’ve always been the good, responsible, A+ student so I applied myself and learned the language quickly and grew to love this country to be my home. I continued to push myself in college and got myself a job in Manhattan where I would gain great work experience.
I’d say things started to change a bit in college, can’t say exactly when but I started to feel a lot of pain on the bottom of my feet and calluses started to form under the balls of both my right and left feet. At first, I would soak my feet and cut the calluses off with scissors but the calluses always grew back. My technique wasn’t the best and there were times when I’d cut deeper than necessary and end up hurting myself more. Eventually, I came to find a doctor who I truly appreciate and visit regularly to this day, Dr. A, who uses a blade to shave the calluses off (I feel absolutely no pain while he is doing it). He has been extremely important in helping me throughout this process…as you will see.
My commute to NY was pretty grueling and in college, I would go into the city, walk uphill to the bus (sometimes stand in it through traffic into the city), walk to the train (sometimes stand in the train til my stop), and finally walk to the office. Then I would do it all back home, get in my car, sit in traffic and drive to campus to take night classes. In a way, I’m glad things were just starting then because I would never be able to do that today.
I went through a pretty stressful situation in college and this is when CMT came into my life. It was there all along because it’s genetic but until then, it hadn’t really come out. My feet started to get worse and I started to visit Dr. A. a lot more to deal with my calluses. Shoes became more impossible to find and even worse, wear! It was hard in the summer, because my feet couldn’t hold flip flops. It was hard at work because I couldn’t find decent looking shoes for the life of me. And in the winter, it was hard to find boots that my high arches could fit into.
At this point, my pain had escalated to feeling it with every step that I took, 24 hours a day (obviously not when I was asleep), 7 days a week. One day, on a regular visit with Dr. A. I noticed that he was touching my toes and I couldn’t feel that he was touching me. So he poked my toes with a needle and we realized that I had lost some sensitivity. This is the first time I heard of Charcot-Marie-Tooth (CMT), which is a neurological disorder. This is when my search for answers begun. I felt all this pain but no doctor could ever give me a clear direction. At least now I had a clue of what to look for. I saw so many doctors, podiatrists, neurologists, geneticists, etc in my search for a diagnosis.
After seeing many doctors, I stumbled upon a geneticist and his team at the Hospital for Joint Diseases who ran some more specific (and at times, painful) tests, including a blood test that would officially diagnose me as a CMT Type 1A patient. It was a relief to know...to be able to give it a name...to read about all the symptons...to read similar stories. At the same time, the diagnosis is that CMT is a progressive and degenerative condition with no cure or specific treatment or medication, so it would continue to get progressively worse and there was no sure way to stop or treat it.
I think this is when faith in God comes in and the belief that everything happens for a reason. I was blessed to be raised in a spiritual home where we believe in God and his love for all his creatures. We believe that we are all here to learn a lesson, to grow spiritually and to learn to love one another. CMT is here to help me grow as a person and to help me correct wrongs that I did in the past, in another life. DISCLAIMER: I'm not sure who will be reading this and you don't have to agree with what I am saying here but this is what I believe in and I know I am better person because of it so please don't rain on my parade LOL.
Because of Spiritism, I have never once questioned: WHY ME? I am ok and prepared to face whatever situations may come my way, but there are obviously times when emotions spill over and you can get a good cry out and then back to normal.
Eventually, I have started to feel a lot more pain in my thighs, a lot more cramping on my calves and my feet have gotten more deformed. Now, I can feel myself get exhausted from a simple supermarket trip or standing in line for a few minutes. I need a few days to recover from any extra activity outside my normal routine. I would not dare go to a theme park or zoo and walk around all day because I know that 1. I wouldn't be able to do it for more than a couple hours, 2. I would be in even more pain than I usually am. If I did want to go (which hasn't happened in a while), I would be willing to rent a wheelchair for the day to enjoy.
I think one of the hardest things is that I don't really think that people believe you're in as much pain as you say you are or that you're just lazy. I'm young, pretty (sometimes...lol), talkative, outgoing...how can I possibly really have what I say I have? But I don't look like I'm in pain...how do I explain that? Well...for me, I feel pain every minute of my life, so how can I live my entire life showing how much pain I'm in, how miserable would that be? You kindda get used to it and learn to deal so that it doesn't normally affect my personality that much. On days when things are worse, then it's impossible to hide it but even then, an outsider can't see!!! It's not like I have an open wound, or like so many people have heard about CMT, so you just have to believe me. Recently, I have had a few people dispute my "handicapped" parking because I couldn't possibly need the help to park closer...those were fun experiences!!!
Please don't feel sorry for me...I've had and will continue to have a very full life. I lived up my years in college, partied with friends, traveled back home and danced all night to Ivete and Banda Eva (which had its consequences later lol), etc. I've gotten older and my interests have changed. I don't enjoy the same things I used to like going club on a regular basis. Now, I'd much rather hang out at home and have game nights with our friends. I don't care if these little adjustments are due to the fact that I am maturing or CMT. I'm still happy either way. Lately, I've been working on my prayers and trying to just be grateful for this opportunity that I have to learn...learn from my mistakes and work through my own karma.
Recently, I've decided to have surgery on my feet. After trying every possible recommendation that might help the pain (i.e. physical therapy, acupuncture, pain medication, yoga, etc) and finding the effects only last for a short while, surgery is really the last resort. So now I am unemployed and just waiting for the surgery to be scheduled. I know it will be a long year ahead of me but I am ready....more on that on the next post!
CMT may have taken me, but it's not going to beat me!
I'm a girl with hopes and dreams who has Charcot-Marie-Tooth (I know! You've never heard of it!). In this blog, I talk about my journey with this invisible disease and 2 reconstructive foot surgeries (and a 3rd minor surgery) I've gone through in the last 18 months. And I try to do it all with a positive attitude and a smile on my face :)
