Wednesday, April 23, 2014

How it all Started

Hello there fellow Chronies, let me tell you my Story

 I am a 20 year old female that was diagnosed with Crohn's Disease on February 11th, 2013. Here is how the story starts:

After I graduated High School, I had hardly a clue what I wanted to do with my life. I didn't know what I wanted to study in school, so that made it so much harder to actually choose a school. If I didn't know what I wanted to do, how could I make any proper judgement about a school based on anything other than their accreditation? After many tears, bouts of anxiety, and stress enduing thoughts, I made the decision to move out of my home and start classes at UCF (which was roughly three hours away). I had friends that were moving to the same area, and even one that was willing to room with me. I was excited to seem to have some kind of start to my life, but also extremely nervous that I wouldn't know what the hell I was doing there. 
When I got my acceptance letter, I was told that because of my semi-low SAT scores, I'd have to attend classes right away in the summer following my senior year of High School. Not stressful at all, right? Wrong. It caused even more of a build up of anxiety that, now that I think back on it, I probably mistook that feeling for excitement. 
I must have realized that slightly when after my family had moved me in and we said our goodbyes, there were way too many tears shed. I was scared. But I was being as brave as I could be. 
That semester went by quite quick, and it wasn't long before I started to feel the effects of my budding Crohn's Disease, which of course, at the time I had no idea what that was. Shortly after I moved in, my boyfriend had come to visit me because he was going to do his audition for the music program there. Things were fine until one night, when I woke up around 3 a.m. freezing, crying, and shaking. At first I tried not to think about it so much, I tried to get more under the covers, and snuggle closer to Robert. However, this didn't help for much longer at all. I woke up shortly after with full on body shaking spasms, feeling the coldest I have ever felt in my life, and uncontrollably crying. I woke Robert up and I think he might have freaked out a little more than I was. Sure, my body was undergoing a full on anxiety attack (or night terror, or panic attack, or something completely unknown to me) but my mind was relatively calm. The only thing I could keep thinking was "When will I stop being so cold. Make this freezing stop." Robert got the phone for me and I then called my mom, because she always knows what to do. She tried to calm me down as much as a worried mother could, persuaded me to drink some water, eat a spoonful of peanut butter, and try to breathe as evenly as I could. It took about 30 minutes to an hour, but I was able to calm down a bit and feel a bit warmer. After reassuring her I would be okay, Robert and I mover to the communal area in my dorm and I just remember sitting there and peeling the sunburn off of his back. Gross to some maybe, but it was strangely relaxing to do something so mundane (and keep my mind distracted) while my body took the time to relax. 
Aside from the anxiety attacks, near the end of the semester I realized I was having more frequent trips to the bathroom that consisted mostly of diarrhea, and I was having some slight fevers every so often before heading to sleep. To reduce the fevers, I would take Aleve (the devil pills to this disease, yes I and hop off to bed. I was also loosing hair, feeling more fatigued than usual, and having stomach pains.
After the semester was over, I took a trip to my doctor to try and see what was up. And the summary of that visit makes me want to smack someone upside the head. After telling the doctor all of my symptoms, the words from her mouth were "Oh, it's probably just stress." ...Yeah, I'll let that sink in. Heated with rage enough now, fellow Chronie? Well, the next thing is sure to make you so. She asks me "Have you been feeling more stressed than usual?" Obviously lady, I'm in college, who wouldn't? "Do you think you get more easily stressed than others?" Uh, maybe? I'm not sure, people don't really explain their levels of stress to me on a regular basis for me to procure some kind of experiment on the subject of related stress levels. "Well, we're gonna give you some anti-anxiety pills to help manage that." What. Really. Is it that easy? Ugh. (I only took them once and it gave me an anxiety attack...seriously) The only helpful thing that she did was give us a pamphlet for a gastroenterologist if we felt that we wanted to look into this further. However, she didn't feel like we needed to. So we didn't. 
So I tried my best to relax over the next week before I had to return to school for my next semester. And that's when shit got real.
I was taking four classes, I was having extreme social anxiety, and I had auditioned for a Hip Hop dance team called Rukus that held practices every Tuesday-Thursday night from something like 9-12 p.m. Classes were stressful, people were beyond stressful, and Rukus was so stressful it made me uncomfortable. While I had a good time with the people and having a chance to dance under fantastic choreographers was amazing, the environment was not the most relaxing. The group was extremely competitive. You had to quickly learn dances and audition each piece. If the choreographer didn't like you, too bad so sad, you're not in the number. There was a lot of "favorites" and I wasn't among them. At the time, my anxiety and stress was so high that it held back my ability to concentrate and that probably come off as uninterested to the choreographers. It was very disheartening, disappointing, and it really hurt my views of my self as a dancer. 
As the semester went on, my symptoms became almost unbearable. Everything  I ate went directly through me. I would eat, and five minutes later I'd find myself in the bathroom with extremely liquid stools. My stomach pains were very intense. I lost so much hair that sometimes I would cry in the shower because it scared me so much. I would get a fever promptly at 7:00 almost every single night (that was fun at Rukus practices). I became very depressed and shut myself out from the world. I stayed in my room and watched Netflix when I wasn't doing school work or dancing. I had to make sure I knew where the nearest bathroom was at all times because I knew I'd need it. My appetite became so small that I hardly ate for fear of pain and having to run to the bathroom. I lost about 15 pounds (I was already a relatively skinny girl) and was very miserable. As much as I try to shut it out from my memory, I can still remember the nights I spent aching, feverish, crying, and wishing I knew what was wrong with me.
The last week of the semester was the worst. One time, after rushing to the bathroom and having a "waterfall shit" as I like to call them, I got up to flush the toilet and found something horrific. The toilet was filled with a bright red blood. And no, I wasn't on my period. This continued for about three or four days before stopping. I ate even less after finding that. Finals were coming up and I was a nervous wreck. Rukus had had our last performance of the season, and that weekend we were going to have our annual Christmas party that was supposed to be an amazing sleepover full of bonding activities. And I would be back home for Christmas break. On the night before my last final, I had the worst fever in the history of all of my fevers combined, and it was escalating. I took way too many Aleve to try and soothe it, but it would not stop. I was shaking, going from cold to hot to cold again. I was also extremely nauseous. I went to the bathroom and tried my best to throw up, get whatever was making me sick out of me because that's how it normally works. But it wouldn't budge. Nothing would come out, not even bile. I sat there dry heaving for hours. I tried to take a cold shower in effort to bring down my temperature but I was so freezing already that it felt like hell. I remember standing there, then leaning against the cool tile wall and wanting to pass out. Anything to stop this feeling from happening. I remember having this thought, "What if I turn my head around and open my mouth to the water. Could I drown myself in the shower? Should I try to breathe in the water? Or maybe I should drink it. Drink tons of it. All of it. Isn't it a thing that if you drink too much water, you can die? I wonder how much that is." I shook it from my head as best I could, got out, sat by the toilet until about 5 a.m. and then forced myself to get in bed and try to sleep some before my exam at 7 a.m. 
I miraculously made it to the exam, even feeling quite better that morning. I called my mom to tell her what had happened and she had had enough. She told me that they were going to come pick me up that day. And they did. And I am so thankful for that. At the time I was a bit upset because I actually wanted to join the Rukus Christmas party, but I was incredibly relieved that I didn't have to be in that negative environment for much longer. 
After returning home, my mom decided it was a good idea to see the gastroenterologist my doctor had recommended. We got an appointment and that was one of the most unpleasant experiences of my life. I didn't know what was going to happen, and when they told me to remove my bottom half because the doctor was going to do a test, I was not happy. After he did it and left the room, I couldn't help but cry. This was all becoming too real and I didn't want to deal with any of it. We told him everything, and he said that he wanted to do a colonoscopy. Which scared me already. He then told me to leave the room so he could just talked to my mom, and he told her he also wanted to do an endoscopy. Why the hell he didn't tell me that, I don't know why. But when the lady at the desk asked when we wanted to schedule it, I started freaking out and crying. I spent the rest of the time in the bathroom while my mom made the appointments and then we left. As soon as I got home, I researched my symptoms and discovered Crohn's Disease. It all lined up. Hair loss, weight loss, blood in stools, diarrhea, nausea, fevers. And it scared the shit out of me. My mom reassured me that it may not be that, because the doctor said it doesn't happen in people my age very often, and with what they know, it should be a genetic disease and there is no one in my family that has it. But something was telling me that it is what I had. 
After waking from my colonoscopy and endoscopy, my doctor told me there's good news and bad news. Good news is, we know what you have and you don't have to be in darkness anymore. A sigh of relief. Bad news is, (a breath of anticipation for what I knew was coming) you have Crohn's Disease. 
And my mom started crying. And I stayed calm. He showed me pictures of my intestines compared to normal ones and, well, it was extremely obvious. I couldn't help but be relieved that I now knew what was wrong with me and that there was a way to treat it. Never cure, of course. But treat it. And that's all that I could have asked for. 

I was diagnosed on February 11th, 2013, and it has been over a year since then. 
I wanted to start this blog to not only create a permanent diary of my journey with Crohn's, but to possibly give some hope, advice, and someone to relate to for my fellow Chronies out there. Here's the start to my story, and I'll be adding on as much as I can remember from the past year, and eventually I'll be telling you about my life as it currently lays. Which is pretty damn healty. Most days. 
If you have any questions or comments, I want to hear them. If I can help in any way, I will be sure to give you my input and hopefully be of some assistance. Even if it's just for moral support. I truly believe we can fight this thing. Through healthy eating, support, and positive thinking.
Here's my story, now tell me yours.

Love your fellow Chronie,
Melinda Shay

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