Surgery!

Hello Everyone!

It was my intention to write a post about the surgery I just had on my right foot BEFORE the surgery actually occurred, but that just didn't happen. There were too many good things happening in my life and the time just disappeared. Not to worry though, now that I have a giant blue cast on my foot, I have plenty of free time to write a post.

To recap, in December 2012, I had surgery to correct the deformity in my left foot caused by Charcot Marie Tooth. This surgery included an Achilles tendon lengthening, triple athrodesis, and first metatarsal osteotomy. The Achilles tendon lengthening helped my toes and foot lift up more toward 90 degrees, the triple athrodesis fused my ankle in a proper alignment and restricted it to forward and back movement (preventing lateral ankle instability), and the first metatarsal osteotomy helped lift the inside of my foot allowing it to sit in more of a flat neutral alignment. After what seemed like an endless amount of physical therapy, the final result was visible. Damn, was I impressed. My foot was more flat, stable, and very strong.

So naturally, my next question was "When do we do the other foot?" I was so happy with the result of the first surgery, I couldn't wait to get the second surgery out of the way and be left with two good feet. So we scheduled the surgery out way in advance for the summer between undergrad and graduate school. I figured this would be the best way to ensure I had a proper chance to recover. It had always seemed so far away until bam, I was sitting in pre-op waiting to go into the operating room wondering where the time had gone. Welp, at this point, there was no turning back.

So I groggily woke up with my foot wrapped up an an ace bandage. Once again, they shoved so much padding around my ankle that it was the size of a basketball. I looked so attractive. At this point, I still had a nerve block and so I didn't feel any pain (I didn't feel my leg at all for that matter). According to the doctor, it was a success. He did the exact same surgery as last time, but was fairly confident he got an even better result in terms of ankle alignment. My first surgery had great alignment, but he was determined to get it perfect this time. So far, it appears he did.

Side note: If any of you get nervous about dating with CMT, date a doctor (or med student). Not only do they know what CMT is, but they come, cookies in hand, to visit you at the hospital. On top of that, they lay with you in bed until you fall asleep. I'm starting to realize this has nothing to do with him being a med student, but rather that he is just a remarkably wonderful guy.

So anyway, dealing with the pain, I headed home from the hospital. Turns out, I don't get along with narcotics (that's a story for another day) so I just took some Tylenol and dealt with it. A few days later, I went in to the doctor for him to check on the healing progress, and to get my hard cast. They took some x-rays, and confirmed that everything looked great. So that's where I am currently. I go back in about a week to get my stitches out and to get a new cast. Six weeks after the surgery date, provided the surgeon notices substantial fusion in all the important places, I should begin to bear weight in a walking cast. From there, physical therapy starts. I'll keep y'all up to date as things progress!

Take a look at some of the pics below. One is of my left foot (2012 surgery) and the other is my right. And then, last is that wonderful guy I told you about. :)

Until next time, y'all.

Joey

Thoughts from Rome

Hello all!

Its been a while since my last post and a lot has happened! First I got my degree. I can now say I am a graduate from The Ohio State University AND that I am an official Mechanical Engineer. I'm so excited for graduate school next year. It feels good to close this chapter of my life and move on to a new one.

Next, I'm in Rome! I've spent the past few weeks traveling in the UK on a study abroad trip. I'm now on my ten day journey home which includes Rome, Paris, and Iceland! The experiences of this trip have been incredible. As my first time abroad, I have to admit I was a bit overwhelmed, but quickly settled in and I am loving it. I've seen astounding things, eaten spectacular food, and met some unforgettable people. London was beyond impressive and I can not wait to go back.

Third, it's almost my birthday! I'm going to be 23....I feel old. But I get to spend it in Rome, which should be plenty fun. Although, along with my birthday comes the fact that my next ankle reconstruction surgery is only a few days away. Soon I'm going to be in that cast, on one leg for like three months. While I'm not ready for that, I am ready for the pain to stop. It's astonishing how good my post surgery foot is now. I can walk for miles and it doesn't hurt. I can balance so well on it. I'm really hoping this next surgery does well to help my feel better pain wise, and more confident in my appearance in the way that I walk.

Although with as much crap as we, as people, tend to give each other for being self centered or inconsiderate, I have been impressed with people lately. I've met a lot of new people and my CMT has come up. The reactions have been fantastic. One guy was so considerate, he continually asked if we needed to slow the pace, or take a break or something similar. What's more impressive? He didn't even sound condescending when he did it. It was almost like he actually, ya know, cared. It was good.

Anyway, I'll update you all soon about new happenings, my surgery, et cetera. As always, thanks for reading. It means the world to me.

Joey

Dichotomy of Feelings

Hello all!

Here goes another post, I love that you all are interested in the happenings of my life!

This is an interesting time for me. Have you ever been in a situation of extremes in your emotions? It’s quite bizarre because in most aspects of my life, things are going incredibly well. I am nine school days away from graduating college, my new significant other, and I’m having my other ankle reconstruction surgery on June 25. So that is the good, and there is a lot of it.

Now for the bad…school is terrible. I have never been so completely and utterly done with something in my entire life. Moral of the story: group projects suck big time. It’s amazing how some people don’t even realize that when they completely ignore their responsibilities in a group, everyone else has to pick up the slack. In this case, it has gone past unequal contribution, past annoying me, past rude, and has finally landed on totally absurd. I’m normally a reasonable person, but right now I just want to yell at the kid to grow the hell up and do his work. I take my school work very seriously and I’m quite disappointed in the outcome of our project, despite the incredible amount of effort I have invested.

It’s weird, the only other time I've felt so hot and cold with things in my life is with my CMT. When everything is going well, CMT is still with me. When things couldn't possibly get worse, CMT is still with me. I’m trying to get through this school nonsense, so I’m just taking things one minute at a time. However, CMT has taught me perseverance, so I have no doubt I’ll be just fine.

Thanks for reading my quick life update! Stay tuned, as soon as school is over, I’ll finish my comprehensive post about my upcoming surgery.

I’ll be back soon!

Joey

Excitement

This post has nothing to do with my CMT, but stay tuned, there are some CMT related updates coming quite shortly!

So this post, "Excitement," follows my terribly boring, generic single word title scheme. Eventually I'm going to run out of good words and my titles are either going to have to get more specific, or gain a number like "Honesty 2.0." Both of those are sort of lame options in my opinion so like everything else in my life, I'll just push off making a decision until its absolutely necessary. :) But for real, there are many happenings in my life which merit a great deal of excitement, so I think I'll share.

Okay so the first (and probably least exciting) thing is that I'm going to Europe in May! I've never thought I'd be the type to do a trip like that, but since I'm staying for a master's degree, it is really a vacation veiled as a study abroad program. The official study abroad program will take me through many of the castles and cathedrals of England and Wales. After that, I'm going to stick around London for a few days, fly to Rome and Paris for a few days each and return home to Ohio. I couldn't be more excited about the trip, I've never been abroad before! For you international readers (I see viewing statistics for this blog, haha) if you are in London, Rome or Paris, let me know! We should meet up and get lunch or something!

Okay moving on to something which is a little more long-lasting, in 19 school days, I graduate with my Bachelor's of Science Degree in Mechanical Engineering! Hoe-lee cow, I'm not sure how I am finally to this point! It's such a mixture of happiness, excitement, fear, and sadness that many of my friends will be leaving. However, as I mentioned earlier, I'll be staying for my Masters, so this is a bit of an anticlimactic graduation. It's still quite meaningful though. It is the culmination of endless hours of homework and studying, a general lack of a social life, and quite a sizeable sleep deficit. I'm excited to finally be rewarded for my work and to move on to the next phase of my life!

Lastly, for you regular readers, I went to the doctor yesterday for my ankle reconstruction surgery consult. I'll be in touch very soon about details and a surgery/recovery timeline!!

Until next time,

Joey

Evening thoughts

Hi Everyone!

Sorry that it has been so long since my last post; engineering school has been quite demanding recently and most of my energy has been devoted to trying to keep myself from going completely insane.

My life these past few months has been a whirlwind. I got accepted to a study abroad program, I just bought a car, I'm tentatively looking to have surgery this June... It's been wild. Not only that, but I feel like I've been on an emotional roller coaster. CMT has played a huge part, but so has dating. Maybe my stress about those two things is completely related. Anyway, tonight's post is not about that, but rather, it's a positive post.

I've just been so impressed by the people in my life recently, and I want to share my happiness. Let's face it, the real world sucks sometimes. Every freaking thing is a competition; at school, at work, if you're not ahead, you're behind. But with friends and family it's completely different. I feel like I've pared down my friends and I've only kept the good ones. The ones you can depend on. There's nothing more comforting than knowing people have your back.

If CMT has taught me anything in this life, it's how to be myself. I got really sick and tired of trying to be someone I'm not, to try to fit some mold so people would like me. Screw that. There are people in the world who love every annoying, loud-mouthed, short tempered, funky footed aspect of me, so why waste time on anyone else?

My feet are strange, annoying, weak, unstable, painful, and half-metallic, but guess what?

I don't care.

My love/hate relationship with snow

Hi friends,

So I am sitting here inside while the polar vortex descends all around me. Columbus, Ohio is slowing finishing its transformation to Antarctica. Anyway, I thought this might be a good time for me to rant about how much a hate the snow, but love it at the same time.

First of all, nobody can reject the plain and simple fact that fresh snow is amazingly beautiful. Engineering side note: snow is super fluffy and therefore absorbs sound really well, so it makes snowy nights super quiet and peaceful. I love that.

Okay now on to the rant. Snow (second to sand) is like THE most irritating substance to try to walk on. My freaking feet are unstable enough on solid ground, let alone the solid/liquid (soquid? haha) death that is snow. It literally wears me out. Most days, my feet are fine until the walk back to my car when they start to get tired and begin to hurt. On snowy days, however, I can't even make it out of the parking lot in the morning before I am ready to just call it a day and go home. I guess the question I need to be asking is whether or not it's socially acceptable to wear snow shoes whilst walking to classes on campus. Probably not. :(

Anyway, I hope all of you are staying warm, wherever you may be. Until next time....

Joey :)

Blog inspiration and a few other thoughts

Hello again,

Today, I wanted to share a few thoughts which have been on my mind. Be warned, the tone of this post is probably a bit more serious and less upbeat than my usual. Who knows, maybe it is because I'm spending Valentine's Day sitting in a computer lab on campus. #engineering :-P

First, I wanted to talk for a moment about unity and togetherness, especially between people with chronic illnesses. I'm not sure how many of you have read the short bio on the right side of the blog, but in there it talks about my motivation for starting this blog in the first place. While I was on an intership, I was in a meeting where it came up that I had a chronic, incurable (at the moment) disease. I don't remember how exactly it had come up, but that is not the important part. The important part is when one of my coworkers, John, talked to me after the meeting about my CMT. During the course of our conversation, John revealed to me that he had Cystic Fibrosis. If you know what CF is, you know it is quite a scary disease. He said he felt comfortable talking to me about it because I had CMT, like we had a sort of bond because we've both experienced the hardships of a broken body. At first that caught me off guard, because I had never thought about it that way. However, the more I thought about it, the more I knew he was totally right. Turns out John has a blog where he talks about his CF, networks with others who have CF, and generally shares his life story. What an inspiration. One day, he finally convinced me to start this blog, and now because of him, I'm hooked. I invite you to take a look at his blog here.

Anyway, please note that I'm not trying to say that CMT is comparable to CF (not in the least), but  I am trying to say that my experience with CMT has given me more insight into the way someone like John might think and feel. However, I don't think you need to have struggled through a disease to have those insights. Sometimes I think we spend so much time thinking about hiding our problems, or running away from them, and it's easy (for me, at least) to forget that people have all sorts of hardships in their lives. Similar to the materialistic mindset of "If I just had this new gadget/car/phone/thing, I would be more happy in my life," I think it's easy for people like me, or like John, to think that "If I just could cure my CMT/CF, everything in my life would be great!" For the lack of a better term, this is complete bullshit.

Okay, now let me discuss that for a moment, before you get angry. Am I saying that curing CF or CMT would not be a good thing? Absolutely not. Would it be nice to not have CMT? Of course. But would it make me happier? Probably not.

I'm not trying to be de-motivational here, please understand that. I encourage everyone to face their problems head on, and believe me, I am going to fight CMT until my dying breath, but we just need to remember to live our lives along the way. The path to happiness is not a new TV, it's not a mansion with a 10 car garage, and it's definitely not a disease-free body.

I hope y'all have a good weekend!


Joey

Upcoming Surgery

Howdy,

This post is going to be more medically oriented, so those of you who don't like medical things may want to skip this one. SHIELD YOUR EYES! Ha.

I have determined that I will most likely have surgery on my right foot this summer. For those of you who don't know, about two years ago, I had a major ankle reconstruction surgery on my left foot. I'll post a picture of the x-ray below. Overall, the results have been astounding. I can stand for hours without any pain, weight is evenly spread from the ball of my foot to my heel, and my gait is significantly more stable. Most surprising, my left foot can almost pass as normal now.

Anyway I have eyeballed this summer as being the best time to knock out my other foot. Between my study abroad trip and the start of grad school, I should have about two months to recover. I'm anticipating three months before I'll be out of a boot, but I should be reasonably healed by the time school starts.

Here is my concern: Last time, the biggest issue with the surgery was the muscle atrophy in my calf. It's been two years and my post surgery calf is still noticeably smaller than the other.

Here is my idea: I'm going to start seeing a neurologist. I want to see if it would be possible to use some sort of electrical stimulation to contract my calf muscles and keep them alive while I'm in the cast. I know people use electrical stimulation in physical therapy, but I'm curious about its use in this particular aspect. A family friend (who is a doctor) mentioned that there had been studies done and they had shown promising results.

We'll see how my appointment with a neurologist goes, but I think convincing my orthopedic surgeon to do some sort of electrical stimulation might be challenging. Unfortunately, it seems that specialists have tunnel vision and I just hope he will agree to look into it.

My CMT friends, have you ever heard of this being done? Let me know your thoughts below! Also, post about any surgeries you've had, how your recoveries went, and any other related thoughts!

Until next time,

Joey

Validation

I don't have too much time this week for a new post, but some things are just too good to pass up. This post will be short, but sweet (I think). You people, yes you who are currently reading this, should feel special; I am being very open here.

A few posts back, I wrote about dating with CMT. Well, long story short, Joey is still on the market, but this time I have been pleasantly surprised by a person I met. There is a reasonably good chance that this person might be reading this, so if you are: yes this is about you, sorry :). Anyway, before I ever go on a date with someone, we exchange phone numbers, social media usernames, etc, and we both "creep" on each others profiles to determine if the other person is an axe murderer, or if they are worth a night out. So on my most recent date, dinner went well, and I was invited back to the other person's house to watch a movie. I will spare you the details (don't worry, it was all PG), but eventually we got around to some more small talk. Since I'm only a college student, my date asked me about my high school life, specifically about whether or not I participated in any sports. Here is where it gets interesting. I explained to my date that while I did marching band, I stayed away from most sports because I have "interesting feet." To my bewilderment, they said "I know."

Wait, what? You know? Are you like stalking me? I'm reasonably private about my CMT (unless you ask), so I was slightly...err very...confused.

They explained "I saw you had a blog on Facebook. I read your posts and looked up what CMT was. I didn't notice anything at dinner, and I still haven't noticed anything. Even if I had noticed, I couldn't care less if you have 'interesting feet.'"

Ho. Lee. Crap. I was speechless (which is incredibly rare, haha). If there is ever a source of anxiety in my life, especially on a date, it is CMT. How do I bring it up when I know they want to ask? And how to I not make it a big deal at the same time? I can honestly say I have never felt like I did when my date told me they looked up CMT. I don't know how best to describe it, but it is most certainly very, very good. Maybe I am completely over thinking this, but it is crazy to see that someone took enough of an interest in me (before we even met) to read my entire blog. I'm still kind of in shock about the whole thing.

For me, this experience provides two things:

1. Validation that there are good people are out there, and it is truly amazing when you find one.

2. Validation that being honest and open is always the best policy, and if nothing else, weeds out the worthless people.

To those of you reading who don't have CMT, this whole thing might not seem like a big deal, but I assure you, it is. It is a HUGE deal.

Alright, that is all for now. I'm not sure what my agenda was for this post, but I definitely needed to share. As always, thanks for reading :).

Gratitude

I am always amazed by the way some things come into you life at the exact moment they are needed and they have the power to bring you to your freakin knees. This happened to me on Wednesday.

First, the beginning of this semester has been a bit rough. My life seems different. Somehow I feel like I'm so much closer to becoming a big kid, who has to do big kid things and make big kid decisions. Scary, right? I had sort of felt like my life was headed in a direction I did not want, that I was settling to be a person I did not want to be, and that I was compromising my usual self for short term comfort. I had a moment where I lost sight of the things in my life that make it so amazing. I was not grateful for the good things. Then I went to a class and left completely different.

On campus, I am in the University Choir. Singing is something that I love to do and the artistry of it seems to be such a departure from my usual engineering world, so it definitely breaks up the monotony. So while I was in choir, the graduate student conductor had a bunch of little papers on the piano. She had us all take one, get into groups and share our feelings about the quotes written on the paper. Here was mine:

Let gratitude be the pillow upon which you kneel to say your nightly prayer. And let faith be the bridge you build to overcome evil and welcome good.

 

-Maya Angelou

 

This hit me, hard. Talk about incredible timing. If I am just moving about with my life, and not realizing what I have, how am I supposed to welcome the good when it comes?

 

Okay so for the point behind all this blabbering: I think gratitude is incredibly important. Now you're probably thinking "Great idea, Captain Obvious" but hear me out. We need to be grateful for the good and thankful for the bad, as the bad shows us how to appreciate the good. I am a firm believer that in life, we are all on a level playing field. Think about it:

 

You have people with insane amounts of money that have failed relationships in every aspect of their life. You have people with the mental capacity to solve the world's greatest challenges, but don't know how to simply meet someone and introduce themselves. Then, you have people who are disadvantaged significantly in one aspect of their life, whether it is poverty, a chronic illness, or similar detriment, who manage to impact people's lives in incredible ways.

 

This is the type of person I want to be.

 

I don't consider myself to be significantly disadvantaged by my own issues, but I desperately want to have impact on at least someone's life. Who knows, maybe I am just a jerk with a hero complex, but I'd like to think it is genuine. When I look back to the happiest times in my life, they are all caused by someone, not something. Maybe that is why I am a hopeless romantic, why I consider my friends to be my family, and why I think life is so much more than just the mundane day-to-day activities which define us. 

 

My friends, we are all in this together. We all have the amazing aspects, and the terrible ones; let's just try to be grateful for them.

 

 

Again, thanks for reading. You all are the greatest. I've really enjoyed the opportunity to get to know you all, and I hope that by reading my blog, you get a sense of who I am. If you ever want to know about a particular aspect of my life, or you want me to write about something, hit me up on Facebook, or leave a comment here!

 

 

Peace out,

 

Joey

Welcoming new/old friends

Hello everyone!

I'm very impressed with y'all! Hundreds and hundreds of views for each post, and from all over the world? I couldn't ask for more. I'm feeling the love, big time. :)

Every time I've written a new post, I've shared it in all the CMT groups. From there, some of you have shared the links on your own and I appreciate that so much! However, since all of the groups I post things in are private, none of my close non-CMT friends ever see them. In accordance with my new years resolution to be more honest, I think I might make the leap and share so my friends see it as well. So for those of you seeing this for the first time, this is my blog (obviously). Clearly you know I have a sort of swagger when I walk, but you may not have known why. I have Charcot Marie Tooth disease, look it up! Don't google photos though, they are gross and most don't apply to me. Haha.

Anyway, what is my vision for this blog? Why do I have one? Am I just that pretentious to think everyone wants to read about the mundane occurances in my life? Not quite. First, there is a huge online community of people with CMT who reassure me on a daily basis that I am, in fact, not actually crazy. I can't thank them enough. Second, I've been given advice time and time again that keeping a journal is one of the most rewarding things you can do in your life. Well I tried that, and failed, miserably. I don't know, I just kept thinking "if nobody is ever going to read this, what is the point?" Well when I have other people to constantly keep me accountable, it makes it easier to keep posting. So this is my sort of journal, with an emphasis on my CMT. If you like it, subscribe. If you don't, then I don't care.

So if you are new and have made it this far, then welcome! I'm glad you took the time to come read this. Also, if you've ever wondered: if you run into me in person and you want to ask about my feet, go ahead! I really don't mind taking about it. I just never bring it up because to me, that feels like complaining. Nobody likes a complainer.

As you've clearly noticed by now, I like to talk. Probably/definitely too much. I think that might stem from the fact that I hate it if people lie to me. Or when I've done something to upset someone, and they just keep quiet because that is the easier thing to do. That drives me insane. Just talk to me about it! Please! I think that the fundamental foundation of relationships is communication (in other news, clichés may, in fact, be the fundamental foundation of this blog haha). But for example, you can show people you love/appreciate them by hugging them, kissing them, etc, but there simply isn't anything quite like hearing "I love you" or "you're pretty awesome" or "thanks, I appreciate it" from someone. And, not to mention, who else, but your family and friends, do you have to tell you when you have cilantro in your teeth after eating Chipotle. Honest communication is invaluable, and unfortunately, quite hard to come by.

So what am I trying to say here? I am just rambling I guess. But I think being honest, uncomplicated, and loving, is the best way to live. So I challenge you, and myself to spend the next week or so making a concerted effort to ensure that people in your life know that you love and appreciate them. It can catch some people off guard, but it is definitely a good thing.

Before I go, I want to say I hope everyone enjoys their three day weekend. Also, remember why we have Monday off. I think being treated differently for uncontrollable reasons is something we can all agree is simply unacceptable. Life is too damn short to focus on such minor, meaningless differences between people. Take a minute and remember this on Monday/everyday of the year.

May the force be with you,

Joey

"But still, like dust, I'll rise"

I'm warning you in advance, I'm feeling emotional/deep/profound/hipster-ish for this post I'm about to write. Proceed with caution. Ha.

My body is broken. It is fundamentally and irreparably flawed in a negative way. Never will I have a celebrity body, with a six pack or arms the size of my head. It just isn't possible. When I go to the gym, I see guys who just love to stare at themselves in the mirror. I hate it. I literally loathe mirrors. Especially ones that show my entire body, with my little toothpick legs, awkward feet, and terrible posture. I also hate my shadow because it always shows my characteristic CMT swagger when I walk. It is a unwelcome reminder of my reality. I'm only 22 but damn, this disease has done a number on me. I think the most frustrating aspect is the dichotomy between how I look and how I feel. I still feel like a normal 22 year old. I still talk and act like one, but I don't look like one. And I can never change that. And I hate it.

Before you suggest I start depression meds, know this: Not for a single second of my life will I be held back by this hellish disease.

My body is broken, but my mind is strong.

My feet are weak, but my heart is unimpaired.

My self body image is terrible, but my resolve is extraordinary.

I used to be jealous of people with perfect bodies; jealous of people who could run marathons or dance like pop stars, but that is no longer. Jealousy like that is such a waste of time and energy. If I did not have CMT, I would be a different person. I would never have an appreciation of walking up a set of steps, I would never know the pain of a 12 hour day on my feet, and I would never have experienced the sorrow of a shallow rejection. Every one of these things has changed me, and I believe, rather I know, it was for the better.

I only have this single life, and I refuse to accept that CMT will ruin it. I will work as much as I can, I will learn as much as I'm able, I will pray as often as possible, and I will love without reservation.

.......

Alright, I'll get off my pedestal and remind myself that everything I've just written has been written by someone a billion times before me. Haha. None of this is new, it is just new to me.

Annnyyyywaayyy. Thank you all so much for your continued support. The love complete strangers have shown me restored my faith in humanity. I appreciate all of you more than you know. As a note, I stole the title of this post from Maya Angelou's famous poem: Still I Rise. I think that phrase is immensely powerful. All right, that's all I have tonight.

Remember to comment and subscribe!

Hakuna Matata,

Joey

Honesty

Hello everyone!

I hope your new year is starting off well. I'm sitting here in the lounge car of my Amtrak train, I have about four hours remaining so I'll give you all a little bit of insight into my life at the moment.Things are going well, considering all aspects of my life. My toes have healed well from my most recent surgery and with a sock on, my foot can almost pass as *gasp* normal. Mind you, this is only my left foot, my right foot still has it's trademark CMT shape. It's a work in progress...as is the rest of my life.

Other things in my life are going well too. Without going into too much detail with random strangers over the internet, I'll just say that, for the first time, I've been honest with friends and family about a very personal aspect of my life. Man, does it feel like a weight lifted off my shoulders! It's now clear to me that secrets really eat away at you when you try to hide them from the world. Keep in mind, I don't think you should advertise everything in your life to the entire world, but make sure your family and close friends know you well so they can support you when you need help. I always need support in my life, more often than I admit. My friends and family have amazed me with their love and support the past few weeks, and I must say, I am a lucky guy.

I will probably say this in every post, but I think it's important. I want to remind everyone that this blog is not about CMT, it is about me in general. Considering I spend most of my life NOT thinking about CMT, I will not focus this entire blog on CMT. I feel like I am much more than the disease I have, and if you have CMT, you must remember that as well!

Also, as some of you may know, I am an engineering student and "spring" semester begins on Monday. I will try to make sure I keep everyone in the loop, but I apologize in advance if my posts become slightly less frequent.

That's all I have for now. Please subscribe! Please comment! I'm letting you all get to know me, so I want to get to know you as well! Ask me questions and I am more than happy to respond!

See you on the flip side :)

Joey

Lastly, I'll share with you a selfie of me on the inner harbor in Baltimore, Maryland. See, I am a real person! :)

Obligatory New Years Post

Hello everyone!

I wanted to thank everyone for continuing to follow my blog. It truly does mean a lot to me for people to take an interest in my life and in what I have to say.

So what do I want to do differently in the new year? The biggest thing is that I want to be myself. There have been things in my life I felt like I've needed to hide from the world. One of those is CMT. I'm really not sure how I feel like I've been hiding it, because everyone can see it and it's quite obvious, but I guess I'll just try to be more open with it.

Next is the fact that this year is the year where I will have to "grow up" significantly. In May, I will graduate and move on to grad school and I will probably have to buy a new car soon as the one that parents gave me is on its last leg. It's crazy to see my undergrad friends picking jobs, some close to home and some halfway across the world. It's kinda scary actually. I'm certainly not saying anything profound here, but it is all new for me. And this is just scratching the surface.

And then there is the fear that I hold in my heart about my CMT. I've had surgery on one foot and it has been such a remarkable change in my life. I'm so excited to have surgery on the other foot as soon as time permits, but I am still terrified for the future. CMT is so unpredictable that I really have no way to picture the future of my life. Will my mobility suddenly get worse? Or will the damage stop and I'll stay exactly how I am for the rest of my life?

At the same time, I always need to remind myself, and maybe you need reminded of this as well, but CMT does not define our lives. I continue to believe that I will do great things despite the fact I can't run, can't climb mountains, and can't dance to save my life.

So in closing, I want to wish anyone reading this a Happy New Year. I hope for the best for all of you in every aspect of your life, especially your health. And if you ever want to take advice from a very unwise, naïve, college kid, hear this: be honest with people. Call someone you trust and tell them the deepest, darkest secret. It is so hard to do, but you will be surprised how well people react. I was.

Happy New Year!

Joey

Surgery and Dating

I'm mad at myself. I was one of those people. I'm talking about the people who start a blog, post twice, and never return. For those of you who read this, I promise that I will actually try to keep this going. I really have a lot to say (I don't ever shut up, even when I should) it's just that finding the motivation to write it all down is somewhat tough. As I said in a previous post, CMT is part of my life, but does not define me. I don't want this to be a medical blog, but rather something about my life for anyone who cares to read.

First things first, I had surgery the other day on my left foot. The surgeon cut the tendons in my four smaller toes to get them to lay down flat. Compared to the other surgery I had previously, this recovery is quite benign. For those of you considering something to straighten your toes, I highly recommend it.

Now for the fun part, for those of you who've had surgery before, or those of you who wear AFOs, this can present particularly interesting challenges in the dating world. Why is it that I don't meet anyone until I have to wear a nice, sexy, post-op Velcro shoe? I certainly wouldn't say I'm super fashionable, but I'd like to say I dress myself well. This shoe is really cramping my style. Anyway, so I told my date that I had surgery, but not that I have a degenerative neurological condition. I never know quite how to say it to someone without sounding...strange. I don't want them to think I'm dying or something. It drives me crazy. But anyway, I will hand it to my date for actually looking at me, instead of my feet when we met. I kinda like them, especially for that.

As a side note, it drives me up the wall when I meet someone and they stare at my feet instead of looking at me. Yes, my feet are strange, but damnit, I'm up here. Please look at me when we are talking. Okay, rant over.

So moving on, I've gone on a few more dates with this person and I'm kind of in a tricky situation. They obviously know I am walking a little strangely because I have a fabulous post-op shoe, but how exactly do I tell them that even when I'm back in normal shoes, I will still walk strangely? I mean, does it really matter? Probably not, but I feel like I'm kind of participating in a bait-and-switch. I don't know, maybe I'm overreacting, and I certainly don't want to be with someone if they can't look past something I have no control over, but I still feel like I need to say something. The struggle is real.

I guess I just need to remember that at the end of the day, I want someone who wants me exactly as I am.

Does anyone have any interesting stories about an illness and dating? It doesn't have to be about CMT. If so, post them in the comments! Also, please subscribe! It gives me motivation to write here! :)

Positivity

Time for my second post! I was really impressed and surprised but the amount of views my first post received. You guys are great. I'm going to keep posing about weekly (or whenever something happens that I would like to share), so please subscribe by clicking one of the RSS links or entering your email address on the right. Also, share my posts on Facebook, tweet it, or mention them on your own blog. Whatever you cool kids are up to nowadays.

So in this post, I'll talk a little bit less about CMT and a bit more about myself so those of you who aren't my family and friends, can get to know me. Plus, we live our lives with CMT, I think we deserve a break once in a while. I'll start out by saying that I would describe myself as a "cautiously positive person" when it comes to my outlook on life. I say cautious because I know there are things in life, and I have experienced my own fair share of situations, that flat out suck. For instance, CMT has kept me from participating in many physical activities throughout my life. Even for those of you who don't have CMT, I think everyone reading this can think of something about themselves that has kept them from doing what they wanted at some point in their lives. However, (this is the most important part right here) I do firmly believe that some of these negative aspects of our lives often impact us for the better. For example, with me, I think that having CMT had caused me to be a more sensitive person. I think my ability to put myself in another person's shoes is really aided by the fact that I have had some pretty terrible hardships in my life (Not to make myself sound high and mighty). But when I see someone really going through a tough time it truly does impact me, I physically feel for that person. Maybe that is how everyone is, and maybe I'm not special, but that is one thing I really like about myself. I honestly believe that having CMT, a chronic illness without a cure (for now), has shaped me to be this way. And I love it.

I'm hopeful that my rantings above made at least some sense, I'm certainly not the best writer but I'll just say what I think and hope you like reading it. Comment below!!! Also, feel free to ask me any questions!

PS: I'll post pictures from time to time if I am writing the post in a particularly fun place. For instance, tonight I am sitting on the beach at Lake Erie and it truly is a perfect evening.

Now off to do homework.

-Joey

Camping Trip

So I'm going to start off by talking a little bit about a trip camping trip I just went on. For the most part it was a good trip, other than the part where I hit a deer and made a fool of myself after I had just little too much to drink. We'll get to that though. 

So what does this have to do with CMT? Well, I was nervous about this trip, specifically about my feet. If any of you have CMT, you know what it does to our feet. I would say (based on google pictures of CMT) that the deformities in my feet are moderate to severe. Not too long ago, I had an operation on my left foot where my surgeon put in nine screws, five staples and a plate. I will write a post on that soon. Long story short, my left foot is significantly better, but I still struggle with both, particularly my right. I really can't say what makes my feet better or worse at particular times but there are definite highs and lows. Sometimes it feels like I could go on forever, but other times it feels like my feet are lifeless and I start tripping all over myself. Anyway, my feet did hold up pretty well during the trip, but I wore a brace on each one to give a little extra support. They weren't AFOs but they were hard plastic braces. I'm not sure if any of you reading this wear braces, but man, can they be a pain. Truthfully, I was really glad I had them because I felt nearly invincible with them on, but at the same time I felt a little ridiculous. There is nothing like looking like an uncoordinated fool, trying to put on your shoes with the person you like looking at you. Now who the heck knows what they were thinking while they were looking at me, but it still made me feel pretty crappy. It really does hit you right in the self-esteem. Granted, I don't want any significant other that looks at my feet before they really look at me; but that doesn't make me feel any less self-conscious. So if you can relate to this, I feel your pain!

I'll end with a quick bit about alcohol. I don't really drink often but when I do, I feel it really quickly. I think it is mostly because my ability to balance sober sucks on its own, but add just a bit of alcohol and I look like I am beyond drunk. I do like drinking with friends but I don't like making a fool of myself. Luckily for me, I have some pretty great friends who support me emotionally..... and physically when I have a beer or two. 

Have any of you ever experienced any of these situations before? How did you handle them?