Wednesday, December 31, 2014

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

Sunday, December 28, 2014

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! :)

Tuesday, July 8, 2014

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

Tuesday, July 1, 2014

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?