“There is no greater agony than bearing an untold story inside of you.”
– Maya Angelou, I Know Why the Caged Bird Sings
Let’s get back to the infamous rare disease in this post. After I was discharged from the hospital in 2011, I had to drop out of my sophomore semester of school even though I was only two weeks away from finishing. It killed me to drop my classes because I worked so hard and I knew I was succeeding but all that work ended up null and void. I had to postpone my summer job, which I loved, and was strictly told by my doctors that I needed to rest that summer. That’s another part that killed me; I had to give up a job I loved for a summer of rest. On top of all that, I could hardly hang out most of the time because I was still recovering to the point where I overdid it and almost ended up passing out in the Zoo because I stood up for too long. I felt useless, defeated, hopeless, and inadequate. I went into a deep depression that summer wondering why this happened to me out of all people. I went to doctor’s visits regularly, because since my blood is so thick, they have to check that my medication (blood thinners) is working correctly and that my blood is at a stable level. The test is somewhat along the lines of how you check for your sugar levels, you stick your finger with a needle, place the blood on a pad, and it reads how thick or how thin my blood is. I always have to be between 2 and 3 but recently just found out that stress can alter my blood levels, and if you know me, I’m always stressed out. I hated taking medication, I hated getting my blood checked, and I absolutely hated everything about this condition. So I was steady up until about 2012-2013. I always took my medication, did what I had to do, went on my regular doctors’ visits until I began to rebel. No one, absolutely no one, wants to take medication and after a while they started prescribing me other pills because my bones were so fragile from the blood thinners. Once they prescribed those to me, I gave up. I stopped going to appointments, I stopped taking my medicine, and I thought I was fine. Yes, I was reckless and until this day my parents want to murder me for stopping and sometimes I wish I didn’t, but I THOUGHT I was okay, I THOUGHT I didn’t need it, and I THOUGHT WRONG.
2011-December of 2014 I was alright, nothing went wrong and I was happy. I graduated college, I got to experience the Disney College Program, I had survived a lot and gone through even more and I thought I was healthy.
I went back into the hospital for a second time. Apparently the blood clots had started to close and I was sick once again. It was not as serious as the first time but this time, I wasn’t in pediatrics anymore. I remember people telling me I was not going to get same treatment as I did in pediatrics and they were right. The first night, I spent most of the time in the Emergency Room while I hustled my mother to get a wrist band and my sig. other since 2013 had known someone in the E.R. that they let him stay with me. When it comes to my condition, I don’t play games. My parents or someone has to be there with me because I am so mentally messed up when I’m sick that I will not comprehend what a doctor is telling me. My sig. other had put in his two week notice and he only had a few days left at his job but he had told his boss that I was in the hospital and his boss let him stay with me. My mother, father, and sig. other were with me the entire first night and never left my side. This is when the craziness occurred. They said my room was ready and they started bringing me upstairs, to put me in a hallway. Doctors would come and speak to me and I never felt more uneasy in my life because I was speaking about my personal business in a hallway. Now, as you see, I’m more vulnerable now then I was back then. My mother was furious and when she’s mad, you cannot get in her way mainly if it is something dealing with her daughter. I got into a room around maybe 8-9 am, I believe. Being in the hospital around this time was not so bad minus the horrible stomach pain and the fact I was on IV’s for about two weeks and then to add on top of that Christmas was a week later and I definitely did not finish Christmas shopping at all. I was scared most of that time though. I had already spent Easter in the hospital and I felt depressed, I couldn’t imagine spending Christmas in there while all my family gets to be together and if I was stuck in the hospital, I knew I was going to go back into depression if that was the case. I got released a week before Christmas and even though I was still getting back to being okay, and I mean okay in the ‘off IVs, no needles, and have to have strength’ kind of way. I promised myself I wouldn’t let this happen again, I wouldn’t have a scare ever again… but then I realized every 1.5 years; something has to put me back in a hospital. I guess it’s improper to think like that. But it’s true unfortunately.