This blog is for me to connect with others, and the only way I feel I can do that, is to share my story:
My whole life I have felt different from others. I always wondered why I had such a difficulty doing anything physical. I always just assumed I was lazy. (Which I can’t completely deny) Even in elementary school I was a frequent visitor to my nurse’s office at recess time where I would complain of being dizzy or throwing up due to the heat. She would shake her head at me, take my temperature (which was fine), and send me back to class. This occurred practically every day from first grade to 6th grade. So fast forwarding to High School… Being an awkward freshman was an almost necessary step in life I had to take, but I wanted to make it easier by joining a sport so that I could make some friends. My close friend, being the athletic girl I wish I could be, offered to go running with me to train for the cross country team. Upon my first time running, I puked everywhere in my neighbors yard. That’s right, my neighbors. I didn’t even make it past that. “Man!” I thought to myself, “I had no idea I was this out of shape!”. So my ‘training’ continued. Unfortunately, the more I continued, the worse it seemed to get. I would throw up the whole day following it, and I wouldn’t recover from feeling awful for several hours post-workout. It started occurring to me that this probably was not a matter of me being in shape or not.
Time flew by, and before I knew it, it was my Junior year. This was supposed to be the most important year academically and I needed every bit of concentration and determination that I could get. Unfortunately I got just the opposite. In September of 2011 I made my first ER trip. I was having awful chest pains that were different than any I had before, rashes all over my body, and difficulty breathing. My ER doctor didn’t give me the time of day, and to be honest, who can blame him. So many people come into the ER because of panic attacks, so thats what he wrote me off as. Just another kid with anxiety and stress in their life. So after being poked multiple times in an attempt to draw blood, and being told I had “crappy veins”, I went home feeling unsatisfied and sick. As the days went on, I felt worse and worse. I wasn’t even able to keep my eyes open during class and my brain felt foggy and sluggish. I went to my doctor and was diagnosed with mono and possibly a mild case of valley fever. (She didn’t want to put me through the blood tests to verify that after the trauma my ‘crappy veins’ endured in the ER). So I went home, rested up, and didn’t feel remotely better for months. My life carried on, and even though I felt bad, I tried to go to school as often as I could.
I have a huge interest in pursuing a career in the medical field, and during my junior year I was enrolled in a class where I would shadow some wonderful people in different departments at a very prestigious hospital in my area. I hated missing this class more than anything. Months after my initial diagnosis, my symptoms of mono were barely noticeable, and I felt good. That is until I passed out one day on one of my hospital rotations. That whole morning I felt dizzy and sick, but I was so interested in what I was learning on my rotation that I didn’t want to miss it. (And I usually felt dizzy every morning, so it was nothing new). I was standing with a phlebotomist who was performing a routine blood draw that I had seen many times before, and I had been standing for about an hour already. Suddenly the whole room seemed to spin and I decided to excuse myself to go to the nurses station. I was searching for some water because I assumed I was dehydrated, and fell back against the wall and slowly slid down. I passed out momentarily and came to with an extremely friendly respiratory therapist crouching next to me with a cup of orange juice. He told me to drink it to spike my blood sugar, and just as I sipped some he informed me “But just to warn you, you’ll probably thro-” and at the most humiliating moment in my life, I threw up in the nurses station. I looked up, and in the doorway was the phlebotomist I was shadowing and my fellow classmate looking down at me. Never have I felt more embarrassed and ashamed in my life. It was in this moment that I knew something was wrong with me. There had to be a reason for me to feel so dizzy every day of my life, and for this dizziness to be so much more severe after standing for a long time. I went home crying that day, replaying those moments over and over in my head. In the next couple of weeks I passed out at other random moments when I was out and about, so my mom decided to schedule an appointment with my doctor. And so began my journey to my diagnosis of POTS.
The next few months I had many appointments with doctors. I was sent to a cardiologist, who ordered a stress test. So I went to the children’s hospital to get one done. Upon arriving at the hospital, they hooked me up to all the monitors to preform the test. After they hooked me up, they seemed to get a nervous look on their face while looking at my heart rate. They asked me if I was nervous, I told them no because I wasn’t. They stepped out and then came back in to inform me that they didn’t feel comfortable doing a stress test because of how high my heart rate was; so they sent me to have an ultrasound done on my heart because they now thought I could possibly have holes in it. Nothing was found during my ultrasound, so I was sent back to the cardiologist, who didn’t have any answers for all of my symptoms. A couple of months later, I made another trip to the ER. This time for severe chest pains, the worst headache I’ve had in my entire life, loss of feeling in my left arm, and a horrible stomach ache. All these symptoms felt so unrelated, and I was laying on the floor in my room, unable to move because of the pain, just wondering how I got to this point. This ER trip was better than the last one, probably because they put me in the pediatric ER instead. (So colorful!) My doctor found a bad infection in my sinuses through my CT scan, which was the probably cause of the headache. As for the other symptoms, he didn’t have answers. He gave me some morphine to ease the pain, and turned the lights off to let me rest. At this point I was extremely frustrated, and I told the nurse about everything I had been going through the whole year. She told me that it would be a good idea to see a neurologist. And thank goodness that she did. The rest of my time in the ER didn’t go smoothly as I had an allergic reaction to morphine, and had to stay overnight due to my high heart rate.
A few weeks later, I went to see my neurologist. As soon as I walked through the door he seemed to already know my case by heart. (Apparently all of the doctors I had seen had been emailing each other about me trying to figure out what was going on. I felt like I was on House!) This was the most entertaining doctor’s appointment of my life, as I had to do some of the goofiest things I have ever done. He turned off the lights and shone a bright light in my eyes. He told me my pupils barely reacted to the light, and he asked me some questions such as “Do you sweat?” (Which I don’t). About five minutes later he smiled and said “I knew it the second I saw your case, you have POTS!” My mom and I were confused, as we have never heard a thing about this disorder. He proceeded to inform us about what it was, and he told me that my case is one of the most severe he has seen in his career. He said that my case of mono earlier in the year damaged my autonomic nervous system, and it made my POTS worse. Apparently I could have had it my whole life, and I just always thought it was normal. Then he told me the bad news- there is no cure. My heart broke at this, because there is so much I want to achieve in life, and this makes things a thousand times harder. But if there is anything I learned through all of this, it would be that everything could be worse, and that I should be thankful that I still have a shot at achieving my goals, no matter what life throws at me.
So that’s my story, and it was long, but I would love to hear each and every one of you guys’ stories, no matter how long they are!