You Are Tougher Than You Think

Everyone constantly talks about how there is always life after the disease. Well, I’m going against that. Of course there’s life after, but if you sit around waiting you’re going to miss out on so much! If I had waited around for a medicine or infusion to work, or a surgeon to say yes to a surgery I would have missed out on a majority of my childhood and of high school. When I was a patient at Georgetown as a kid, whenever I got the chance I would leave the hospital, go to the practice field (that I could see from my room), and watch the men’s lacrosse team practice. I was obviously the outcast in the stands during practice, since a majority of the time it was just my dad and I watching, so the boys and their coach caught on. That week a few players came up my room to visit me. I remember very little of that visit but I do remember playing video games for an hour or so with these guys I idolized. This also happened with a few girls’ lacrosse players. I remember sitting in my h...

I’ve said this a couple times previously but I’m the third generation of Ulcerative Colitis pretty much proving that this disease has put my family through the ringer. Fortunately I can say that this is the first time that I’ve seen this side of the situation. Today I’m the family member who is sitting in the waiting room while a loved one is in surgery. I want to just thank everyone who was waiting for me. From the ones in the waiting room to the ones sitting by the phone waiting for my sarcastic “I’m alive” text message or phone call. I never understood what it felt like to be on this side, but now I do and let me tell you it’s not a good feeling. While we might have to fight the physical, and often the emotional battle through this disease, our friends and our family face a very similar yet very different battle. We are always recognized for how strong we are and the tough fight we put up, our loved ones are often left in the dark despite all they do. Not only do they have ...

Recently I've come to the realization that the disease will never truly be gone. You may have surgery, you may have procedures, and you may have infusions to make everything better but its never completely gone. I've done my fair share of surgeries. I've been fighting this since I was young and yet 17 years later I'm still seeing the horrible and embarrassing effects of this disease. I know many of you feel the same. For whatever reason I've chosen to write about it, crazy me. But as I sit here I realize that I can't be alone, I'll never be alone. Few people will be able to truly understand how horrible this all is and how this fight will never end. It starts with ourselves accepting our fate. For whatever reason we were chosen to be the face of these diseases. Maybe my reason behind all of that was to help you. If so, I hope I did or I can. We can go about all this and hate everything and hate God or whatever you believe in for putting you through ...

I’m not going to sit here and preach to you about how you should always stick to your diet plan and eat everything the doctor tells you to eat. I think the diets given to us are unrealistic. I can honestly and shamelessly say that I have never stuck to a diet 100% and not always because I didn’t want to, but because its hard to live a semi-normal life while only being able to eat certain things. There was this one time I was put on a low-fat diet because I had a feeding tube. Yes it makes sense, but I like fatty foods. The day I got my first feeding tube the child life specialist told me I should I have one last fatty thing being starting my diet. Of course being at Georgetown Hospital all I wanted was a cupcake from Georgetown Cupcake. The lovely ladies of Georgetown Cupcake sent over a box of delicious cupcakes just for me. So I picked out the one I wanted, a chocolate cupcake with a gooey inside and cream cheese icing. I take my first bite and my doctor rushes into my hospital ...

This disease taught me that life is too short to care about everyone else all the time. I struggled with this a lot, I still do. I want everyone else to be okay then I worry about myself and that’s not how it should work. You always need to come first; everyone else can take care of themselves. When I was sick I would always worry about how everyone else would handle the news, and how everyone else was dealing with it. Looking back now, that makes absolutely no sense at all. That is probably the number one reason I was so mentally messed up when I was really sick, because I was too busy dealing with everyone else’s emotions (even when they had nothing to do with my battle) to deal with my own. I’m not saying become totally selfish because that’s not good either. I’m saying that you can’t lose touch with yourself trying to take care of everyone else. You might want to, but no matter how hard you try you won’t be able to and that’ll end up hurting you more and more as time goes on. ...

This sounds so easy, but is one of the most difficult things to actually do. There are two different ways to look at this: your friends and relationships. When it comes to friends, you’ll find those few that will go to the ends of the earth for you. I remember this one time I had to rush from one of my college night classes to the local emergency room because I was in so much pain. I told two of my best friends what was happening but continued to promise them that my parents were on their way, that I would be okay, and I would call them in the morning. They obviously didn’t like that answer because about 15 minutes after my parents arrival, storming through the emergency room doors were my two best friends. I got transported to my normal hospital for overnight observations soon after, and they followed. They stayed until 1 a.m. just to make sure I was okay. Now for relationships. I’ve done my fair share of dating through the years. While a lot of the guys I let in didn’t end well,...

It’s very easy to get stuck in the negatives during this time. The one thing that made sure I didn’t lose sight of the positive was the one thing I loved the most, lacrosse. It was the one thing that made the fight totally worth it. It didn’t matter if it was watching, playing, or coaching because I was still around it. I was raised on a lacrosse field and I’m not over exaggerating. I started practicing with my older brother’s lacrosse team when I was 3-years-old. When I started getting really sick I thought my whole future in lacrosse was over. I was willing to do whatever it took to play, even if it meant that I had to buy special pads to protect a feeding tube, or figuring out my timing while playing on pain medicines (probably not the best idea). It was the one thing I could count on to make me happy. It was the one constant positive every day. Some of my favorite memories while hospitalized were taking long “walks” when in reality I snuck off to the lacrosse field to watch th...

There was one point before my transplant that there were so many unanswered questions. I was constantly sick; on more pain medicines than you could probably imagine, but my doctors couldn’t figure out what was wrong or what to do to make me feel better. It was then that we had decided to look into a transplant that could change my life. Unfortunately, the transplant team didn’t see me as the right match at the time. No one ever knew at the time but I constantly questioned how I was going to be able to face the next day. The reason no one knew was because I thought everyone expected me to constantly be strong. I didn’t think it was okay to break down and cry because that would make me weak. My doctor would always ask me why I wouldn’t cry. My answer would simply be, “I’m fine.” Honestly, I wasn’t. I couldn’t look past the next day. I was actually miserable. Finally one day I broke, I just couldn’t handle it anymore. It started with crying because I was scared, moved to anger be...

Body image is something that is already an issue with all girls. Unfortunately, with the card we were dealt there is much more negatives that we see with our bodies. It may be scars, PICC lines, central lines, feeding tubes, stomas, even colostomy bags. These things aren’t easy to hide, and yes they are very embarrassing. There’s one quote that got me through every surgery, every procedure, everything. “Pain heals. Chicks dig scars. Glory lasts forever,” from the movie “The Replacements.” I know it’s cheesy, but it’s true. The pain will go away. Somewhere down the line, you’ll learn to love your scars. They become a part of you and you see it as a badge of honor in a way. They’re a symbol of just how strong you are. People will respect your scars because they’re proof your fight. But the pride and the glory you will hold for fighting and pushing through, that’s what is important. I may make it sound really easy, its not and I understand that. I’ve been f...

“There’s a saying, ‘good things come in small packages.’ I believe great things come in different packages.” This is something my mom used to tell me all the time when I was fighting Ulcerative Colitis. Being different was the most difficult thing that I had to deal with while being sick. It is normal for a person to want to fit in, but there was no way I was ever going to be able to. I can’t stress this enough, being different isn’t a bad thing. Yes, it sets us apart from everyone else. No, not everyone will understand what you’re facing and some won’t even care enough to try. What you’re facing, everything you’re going through makes you so much stronger than everyone else. Every surgery or procedure we face, every infusion we sit through, and every medicine we have to take, it makes us stronger. This is your story; this is what sets you apart from the rest. Embrace it. While stuck in the middle of it all it is easy to lose focus on the positives. It seems impossible to s...