Growing up I had always been on the thin side. My parents would blame it on the fact I'm a picky eater (chicken fingers and pizza rolls for life) but it wasn't until seventh grade my weight problem began to cause other problems. School became a daily struggle as kids would pick on me, calling me anorexic and saying things like, "ew, don't you ever eat? Look at yourself." I was 5'4 and weighed only 59 pounds. At my well visit that year, my doctor hinted at the same accusations my classmates had. "Are you scared to gain weight Emily? Do you not like to eat?" My mother assured her I was not anorexic- I ate- I just couldn't seem to gain weight.
And so began the tricky and exhausting ordeal of diagnosing the problem. Though scared of needles at first, I eventually became a pro at them. (I even stopped passing out every time they did bloodwork.) A couple months and one colonoscopy later they confirmed their suspicion- Crohn's Disease. 14 is a pretty young age for your life to drastically change in the blink of an eye. I was put on a large dose of prednisone, which if you are not aware of the side effects, gives you a "moon shaped" face. (amongst other unwanted changes) My mother adored my chipmunk cheeks, squeezing and kissing them whenever she saw me. My classmates on the other hand had a whole new set of jokes. I didn't want anyone to know about my disease- so I would make up excuses like "I was stung by a bee" or "I got my wisdom teeth out." Would I even have wisdom teeth at 14? I didn't know, just like I didn't know how I was supposed to explain a disease I didn't even understand myself. While other kids were out doing whatever it is normal kids do, I was home crying my eyes out because my sister ate my ice cream. True story- balled my eyes out. My family was definitely happy when I got off the steroids.
I went into high school taking a couple medications every morning and night. Since I was a bratty teenage girl asserting my independence (aka stupidity) I decided to ignore my illness and go about my life as if I was fine. I didn't take my meds and before long I relapsed again and was put back on steroids. Being a high school freshman trying to find your way is already difficult, throw in a chronic illness and it's damn near impossible. I hated who I saw in the mirror. I saw chubby cheeks. I saw sickness. I would cry and beg my parents not to make me go to school. (It rarely ever worked.)
The first couple years of high school were the hardest I had been through at the time, but eventually I got my health back on track, made friends, and enjoyed my senior year being happy and healthy.
I was not at all prepared for the stress level of college. Working and taking classes took a lot out of me. Sometimes I would just be too exhausted to walk all the way to class. Sometimes I was scared I'd be getting up to use the bathroom every 5 minutes so I didn't go. I relapsed (yet again) and the docs decided it was time to try something else. They put me on 6mp, a next step up on the treatment pyramid. I felt amazing. I was relieved to have found a medication that not only worked, but didn't have any nasty side effects either. Oh, except for one. Turns out it was damaging my pancreas so I needed to be taken off. That's the way the cookie crumbles sometimes.
When I didn't feel sick, I felt good. I would go out with my friends and not worry about my upcoming doctor appointments, or what I was eating, or if I would regret it tomorrow. I did what my friends did because I didn't want to feel different, I didn't want my disease to control the life I wanted to live.
I was different than my friends, though. And no matter how hard they tried, they couldn't fully understand what I was going through. I would sometimes try to vent my frustrations to them and recieve responses like "well maybe if you ate better you wouldn't feel sick." IF ONLY IT WERE THAT SIMPLE. It was a weird concept to them that I could eat pizza no problem but salad would make me sick. (I actually really like salad too that's the sad thing,)
I started Remicade infusions every six weeks, leaving school for that weekend and traveling back home to get it done at the hospital by me. I would gossip with the nurses and tell them all of my crazy stories from college and they'd just laugh, saying they were glad I was feeling good enough to take a spontaneous roadtrip to the Crayola Factory, or steal a sign off of one of my campus trees. (I went to a forestry school where the trees were labeled) (also if any one from that major is reading this I'm sorry.) The remicade worked for two years before I became immune to it. On top of that I was dealing with some personal life changes that had a great affect on my overall health. I became the most sick I had ever been. I didn't eat, I was always tired, and my stomach was constantly in knots. This past December after more rounds of bloodwork, colonoscopies, and appointments on appointments, I had my first surgery. The doc said there was a section of my intestines that had become scar tissue, and couldn't be healed. My surgery consisted of taking out 12cm of my intestine and a small portion of my colon. Which isn't as bad as a lot of other people's surgery stories.
Though the hospital stay lasted a bit longer than expected with a couple unforseen complications, I walked out (okay actually I was rolled out in a wheelchair) and looked at it
as a fresh start. I was excited to feel as "normal" as I had in years. Now I am looking into what kind of treatment to start to keep me in remission as long as possible.
I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.
You learn to love every good second, every good minute, of any of those few good days you might have. You know it’s not important to dwell on the little things. You have more important things to worry about.
So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular young adult.
Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end.
My story is still currently being written, but I've still had some pretty great chapters despite living with Crohns.
And so began the tricky and exhausting ordeal of diagnosing the problem. Though scared of needles at first, I eventually became a pro at them. (I even stopped passing out every time they did bloodwork.) A couple months and one colonoscopy later they confirmed their suspicion- Crohn's Disease. 14 is a pretty young age for your life to drastically change in the blink of an eye. I was put on a large dose of prednisone, which if you are not aware of the side effects, gives you a "moon shaped" face. (amongst other unwanted changes) My mother adored my chipmunk cheeks, squeezing and kissing them whenever she saw me. My classmates on the other hand had a whole new set of jokes. I didn't want anyone to know about my disease- so I would make up excuses like "I was stung by a bee" or "I got my wisdom teeth out." Would I even have wisdom teeth at 14? I didn't know, just like I didn't know how I was supposed to explain a disease I didn't even understand myself. While other kids were out doing whatever it is normal kids do, I was home crying my eyes out because my sister ate my ice cream. True story- balled my eyes out. My family was definitely happy when I got off the steroids.
I went into high school taking a couple medications every morning and night. Since I was a bratty teenage girl asserting my independence (aka stupidity) I decided to ignore my illness and go about my life as if I was fine. I didn't take my meds and before long I relapsed again and was put back on steroids. Being a high school freshman trying to find your way is already difficult, throw in a chronic illness and it's damn near impossible. I hated who I saw in the mirror. I saw chubby cheeks. I saw sickness. I would cry and beg my parents not to make me go to school. (It rarely ever worked.)
The first couple years of high school were the hardest I had been through at the time, but eventually I got my health back on track, made friends, and enjoyed my senior year being happy and healthy.
I was not at all prepared for the stress level of college. Working and taking classes took a lot out of me. Sometimes I would just be too exhausted to walk all the way to class. Sometimes I was scared I'd be getting up to use the bathroom every 5 minutes so I didn't go. I relapsed (yet again) and the docs decided it was time to try something else. They put me on 6mp, a next step up on the treatment pyramid. I felt amazing. I was relieved to have found a medication that not only worked, but didn't have any nasty side effects either. Oh, except for one. Turns out it was damaging my pancreas so I needed to be taken off. That's the way the cookie crumbles sometimes.
When I didn't feel sick, I felt good. I would go out with my friends and not worry about my upcoming doctor appointments, or what I was eating, or if I would regret it tomorrow. I did what my friends did because I didn't want to feel different, I didn't want my disease to control the life I wanted to live.
I was different than my friends, though. And no matter how hard they tried, they couldn't fully understand what I was going through. I would sometimes try to vent my frustrations to them and recieve responses like "well maybe if you ate better you wouldn't feel sick." IF ONLY IT WERE THAT SIMPLE. It was a weird concept to them that I could eat pizza no problem but salad would make me sick. (I actually really like salad too that's the sad thing,)
I started Remicade infusions every six weeks, leaving school for that weekend and traveling back home to get it done at the hospital by me. I would gossip with the nurses and tell them all of my crazy stories from college and they'd just laugh, saying they were glad I was feeling good enough to take a spontaneous roadtrip to the Crayola Factory, or steal a sign off of one of my campus trees. (I went to a forestry school where the trees were labeled) (also if any one from that major is reading this I'm sorry.) The remicade worked for two years before I became immune to it. On top of that I was dealing with some personal life changes that had a great affect on my overall health. I became the most sick I had ever been. I didn't eat, I was always tired, and my stomach was constantly in knots. This past December after more rounds of bloodwork, colonoscopies, and appointments on appointments, I had my first surgery. The doc said there was a section of my intestines that had become scar tissue, and couldn't be healed. My surgery consisted of taking out 12cm of my intestine and a small portion of my colon. Which isn't as bad as a lot of other people's surgery stories.
Though the hospital stay lasted a bit longer than expected with a couple unforseen complications, I walked out (okay actually I was rolled out in a wheelchair) and looked at it
as a fresh start. I was excited to feel as "normal" as I had in years. Now I am looking into what kind of treatment to start to keep me in remission as long as possible.
I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.
You learn to love every good second, every good minute, of any of those few good days you might have. You know it’s not important to dwell on the little things. You have more important things to worry about.
So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular young adult.
Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end.
My story is still currently being written, but I've still had some pretty great chapters despite living with Crohns.