MISDIAGNOSED: Book One

Chapter One - Getting The News

This is the beginning of a whirlwind that has been the last 6+ years of my life. It has been an extremely difficult, stressful, awful, and painful experience and yet also enlightening, humbling, educational, strong and powerful thing to be going through. This was not something that I expected to be dealing with from such a young age but there was a lot to learn once the wheels were in motion. What was the toughest to deal with? Who was there to support me? There are several answers to these questions, and they might surprise you once I dive deeper into all of it. Like I said, this is only the beginning of the six years and counting of being misdiagnosed. Now when I say that I have been misdiagnosed, it was not by one doctor. This has been dealt with by several doctors and each of them had given me a different story or reason or excuse or whatever the mind could concoct to sound smart but in fact was practically a waste of time and money. So let me tell you about how we came to find out that something was wrong. I remember the day as if it were yesterday. I was 15 years old and got ready for school as usual. We had a regular routine that could feel depressing at times with how ‘regular’ it was. Wake up at 5:30am, be ready by 6:00am as I would be fetched by my transport at that time. Then there were still other students to fetch along the way and I would arrive at school around 7:15am. Yes, I would be sitting in my transport for an hour and fifteen minutes. I had different transports over the 5 years at high school for various reasons so my previous driver was no longer driving and the one before my last driver was a wreck. They would fetch me earlier and earlier as time went on. First they used to fetch me at 6:30am which I could tolerate. Then it turned into 6:20am, then 6:10am and we finally got to 6:00am. It got so insane that the driver wanted to start going even earlier and I was prepared to walk to school as I would get there 7:30am if I chose to walk. As I was saying, I had followed my daily routine as usual with nothing being unusual. I arrived at school around the time I mentioned and stood with my friends until 7:50am as we did every morning before school officially started. We normally walk to the areas that every class lined up and I remember feeling a bit off for some reason. My bag felt heavier than normal which was strange because I barely had books in there as we tended to have classes where the teachers loved to ramble on about their personal lives so we never took notes on certain days. Of course, we had memo pads on standby just in case. We stood in line and were waiting on all of the teachers to arrive. They normally take about ten to fifteen minutes to show up to the lines but this particular day was different, it felt like they had taken twenty or more minutes because it seemed as if everything was going ridiculously slower than usual. Whilst waiting on the teachers, I kept thinking to myself: “My bag is so heavy and I feel like its weighing me down. Where are the teachers? I need to sit down, or I am going to fall over.” There was this constant aching feeling in my back, my legs, my chest, my shoulders and my eyes. I couldn’t understand why my bag felt so extremely heavy and suddenly I was starting to feel really warm. This was on a day that had icy winds blowing as it was not exactly a warm day. Which is why I wore both my school jersey and my blazer on this day to stay warm in the cold weather. Then everything just increased as I stood there. My body just started to feel much warmer and warmer, and I started swearing profusely as if I ran a marathon but had been standing in one spot for almost fifteen minutes. Then my body started feeling extremely weak as if the air had been pulled out of my lungs. Everyone started to look blurry and I was so confused because it felt so unrealistic. Let me explain why. Do you remember what it was like to fake sickness every once in a while, when you were at primary school? Sometimes I was faking but most times I was genuinely sick. Except that I had mentioned fainting at primary school to my mother in order to go home immediately because of horrible people making life unbearable. So it felt unreal because I had said years ago that I fainted but the fact that I felt like I was actually going to, it felt new and scary. Luckily, one of my classmates was a member of the first aiders and they train to notice things like this. If it wasn’t for her help that morning, I most likely would have fainted on the floor and risked a horrible injury on the cement flooring. She took one look at me and immediately knew what was going on as I was trying to piece it together in my confusion. “She is going to faint! Take off her bag! Take off her blazer!” Next thing I knew, she was helping me walk into the building to get to the office and sit down. I remember that but not how I managed to walk while all of that was happening. She knew to take the bag off as it was weighing on me and to take my blazer and jersey off because my body was overheating. I honestly felt like my blood was boiling, that is how hot my temperature was. Once I was brought into the office area and sat down at the large table. They brought my bag inside and my things for me. It was the sweetest thing and so unexpected. They told me to rest my head on the table and just relax. I remember laying my head down and hearing all the students walking up the stairs to their classes. Hearing my classmates walking up and asking each other what was going on. Some of them tried calling my name but I couldn’t manage to lift my head at all to try and answer them. Eventually the teachers told them to keep quiet as they were heading off to class. After who knows how much time had passed, I could lift my head and saw that my arms and the table was drenched. It didn’t make any sense how I had perspired that much because as I previously mentioned, the weather was ice cold. Then I can’t remember much of what happened after that until we went to the specific area of the hospital where they do blood testing. They took some vials but struggled to get the blood out in the first place which was a big problem already. Once they did the tests, they immediately said that there was a huge problem. My blood and iron was ridiculously low and that was what caused the faint. It is the reason why my body felt so weak and it felt as if the air was pulled out of my lungs. This seemed to start helping things make sense for me. It made me think back to Physical Education classes at High School. In the five years I went to school, we never really stretched before doing exercises. Our ‘stretches’ were running to the big tree about twenty five feet away and back. That was our version of warming up. But I had been having trouble in that class because every exercise started to feel like I was pouring every ounce of my being into it. That I did something as simple as running to the tree and back but then sat on the floor with my heart pounding so hard that it felt like it was going to break out of my chest. My breathing became heavy and it would take me ten to twenty minutes in order for it to calm down. During this time, my face went really red and people would joke about how red my face had turned. Little did they know, I was fighting for breath in a battle they were not intellectually or emotionally strong enough to learn about or fight themselves. Then it also made me think about the simple things a bit more. Something as simple as walking up the stairs every day at school was such a huge task for me. I would walk up two flights of stairs and once I got to class, my heart would be beating so hard that it hurt and my breathing would take forever to calm down. Whilst laying my head on the table and my face was sweating profusely. People thought I ran five kilometres to get to class every time because of how I would look.

This was all a huge wake up call. Hearing the doctor tell me that and then being called to say that I needed to be admitted into the hospital immediately. Not knowing that I was not only Anaemic but there was something else that we didn’t know about.