You Are Tougher Than You Think

No, it’s not what you think. I’m going to need you to keep up with me for this one. It’s been a rough few weeks so I might be all over the place. I was diagnosed with UC when I was 4 years old, which is pretty much unheard of. Throughout the last few years, whenever I was sick the first thing doctors would think is that I was misdiagnosed and I had Crohn’s disease. It wasn’t until recently that I found a surgeon that referred to it as the “C-word.” The word I dreaded, the word I fear, and the word that shouldn’t be used unless you’re completely sure. While I’ve had my fair share of issues with UC, I cannot imagine what individuals with Crohn’s deal with. The moral of this story is that finding the right doctors at the right time is one of the most important parts of this. I’ve worked with many other individuals with similar medical situations facing similar, if not the same, surgeries and it’s an ongoing pattern. For the last few months I’ve been undergoing numerous tests, meeting...

There’s this new trend that I stumbled across a few weeks ago; people have been covering their scars with tattoos. I’m no stranger to tattoos. I myself have 5 (and counting). My argument for tattooing myself was always that I never chose to have my scars so I have every right to decorate the rest of my body the way I want. But there are three big reasons that I don’t think I could bring myself to getting tattoos to cover my scars: It would be incredibly expensive. I would need my whole stomach tattooed to cover my surgical incisions and my feeding tube scars. Then we’d move to my chest to cover scarring from central lines. Not to mention the half sleeves (yes both arms) that I would have to get to cover my PICC line scars. My tattoo artist is expensive as is, but the number of tattoos I’d need would cost more than I’d make in years of work. I can’t rationalize covering my scars. I told my tattoo artist when I got my first tattoo at sixteen that if I ever came to him with a tattoo...

When you’re sick you have a tendency to talk about your current/past medical issues as if they aren’t a big deal. I’m incredibly guilty of this. I know a lot of people have a tendency to feel awkward when I joke about it or just talk about it nonchalantly but sometimes I forget that what I’m dealing with is far from normal. Today was the biggest eye opener I’ve had in a while. After struggling with the transition of being a pediatric patient to being treated like an adult, I realized that the doctor I was working with wasn’t able to give my case the attention it deserved. I’ve been with this hospitals since I was diagnosed at age 4 so you can understand why leaving breaks my heart. I was the one who had to ultimately make the decision to look for someone else and I did. I understood that trying to explain to a new doctor my current situation, my past, and my overall needs and expectations would be a challenge in itself. What I didn’t expect is the reaction I would get. Before ...

Today at work it hit me (I’m also now realizing how awkward this might be if my coworkers are reading this, but oh well). Tomorrow is the day that there is a huge indicator that I’m sick. I found out my UC was active again my second week at this job and since then I’ve made it my task that my coworkers shouldn’t be able to ever tell. The only reason I wanted them to know anything that was happening was my talking about it casually. I don’t act sick, I make sure I don’t look sick; I don’t want to be treated like I’m sick. That being said, tomorrow is the day I get a PICC line place for my future infusions. As much as I try to hide it, I know it’ll still be obvious to others that its there. In high school, everyone knew I was sick. I looked it even though I tried my best not to act it. So when I had a PICC line it didn’t matter, people already knew. There was even a section in my yearbook my junior year dedicated to my surgery and me. This is a whole new ball game for me this time a...

On June 13 th I was surrounded by peers affected by similar, if not the same, disease at the CCFA Walk to Cure Crohn’s and Ulcerative Colitis. At the beginning of the walk a dad was on stage talking about how hard it is, as a parent, to watch your child suffer with an incurable disease. At that point I noticed my mom nodding her head and I looked at her and whole-heartedly apologized for putting her and dad through that. Two weeks later I had a procedure that would reveal that my Ulcerative Colitis was active again. Every part of me wishes I could give some kind of word of wisdom, but I can’t. I’m at a loss. I thought I was healthy. I thought maybe I beat this. The reality is that I always knew this disease would come back, but only four years after transplant? Only two years narcotic free! That’s just not fair. It’s taken me weeks to be able to write this because I wasn’t ready to accept it. Hell, I’m still not ready to accept it. I always say, no one is in it alone. I guess...

I always build this day up like it’s a marriage anniversary. In a way I guess you can look at it that way. It’s my lifelong commitment to losing one more organ and in turn having diabetes. This year is different because it is my first anniversary with this blog so it adds some pressure. As happy as it makes me to look back and be able to say, “yeah I made it,” looking back brings up a lot of bad memories, opening a lot of old wounds. A lot of people came in and out of my life at that time and there were a lot of dark thoughts at that time that I still try to forget about today. Despite all of that, not all of it was filled with horrible memories and hey, today is a day for celebration! Although I was scared out of my mind, I was having a surgery that would change my life for good. I remember very little about my time in Minnesota. I do remember though that I was 18 and facing major surgery. This is the one time as an 18-year-old that I didn’t want to be treated like an adult. They...

I know that life doesn’t just stop when you’re sick. Currently I’m a full time college student working two different jobs. I get that sometimes you have so many things happening that you can’t control and you have to deal with. That’s how life is. But there are times that there is nothing wrong with sitting in bed all day and binge watching Netflix. This is something that you have to do for yourself both mentally and physically. “Mental days” are one of the best things that can happen to one of us. I’m doing it right now. I got out of class and I have the rest of the day off so for the next few hours it’s me time. I’m having what my family refers to as a “bad day.” I woke up this morning and didn’t feel right but pushed through to do what I absolutely had to. Then my body crashed and I realized I needed a mental and physical break. So for the next few hours I’m going to shut out the rest of the world and focus solely on me. Later I’ll get back to reality, but right now I need to g...

WARNING: I do not mean to offend anyone by this posting. I made a promise to myself and my readers that I would always be completely open and honest in my posts, even when dealing with the hardest and most emotional subjects. To this I must stay true. This is not an easy subject and I don’t take it lightly. Understand that I appreciate everyone who has been in my life over my 18 years of illness. I’ve learned different lessons from different people and for that I am forever grateful. Again, I mean no harm. This is something I’ve written about before but I can’t stress this enough, we have to take care of ourselves before we can take care of anyone else. I mean this both mentally and physically.   The last time I spoke about this I focused mostly on how to tell others about you’re struggles and worrying about how they’re dealing. Being sick takes a strain on our mental state, especially when were going through the testing period and we don’t know the next step let alone what mi...