I was born with a heart defect called Congenital Complete Heart Block, which causes my heart to beat at less than half the normal rate. I have had 4 pacemakers since I was 15 hours old. When I was in the eighth grade, I started having some palpitations and chest pain. I also noticed during a routine pacemaker check that the device was not in its proper place. I went to the cardiologist and was completely dismissed with nothing more than a chest x-ray and the advice to take ibuprofen for the pain. The same scenario was played out for 4 years with the occasional misdiagnosis thrown in the mix, all while I watched my high school career pass me by. I received a diagnosis of Postural Orthostatic Tachycardia Syndrome, a type of autonomic nervous system disorder (Dysautonomia).
At one point in my senior year I realized the reality and gravity of the situation; that I wasn't getting better. In fact I felt worse. The meds weren't working. We were (and still are) in the trial - and - error phase of treatment. College became an iffy subject. But I, in my delusional state of denial and in a desperate attempt to be independent, went off to JMU. For the first month and a half, things were just peachy. I hardly had any symptoms and could run several laps around my side of campus a night! I felt normal - healthy. But the lack of sleep and physical rest caught up with me. My symptoms started up again and then one morning, while I was taking notes in my Viral Discovery and Genomics class, I passed out - while seated! I've passed out before, but those episodes were always subsequent to activity. Passing out whilst seated is a whole new skill; I've even been pre-syncopal laying in bed (not to brag or anything). After that scare, I decided it was time to go home and get well before attempting college again.
So here I am, lying propped up in bed, in my granny compression socks. Trying to ride out this storm and tapping away on the keyboard to pass the time. There will be funny posts, happy posts, woe-is-me posts, LOTS of coffee, some science-y stuff thrown in there for good measure, and plenty of rambling (don't expect coherency all the time from the crazy, hypoxic woman who spends her days stuck inside her parents' home). There will be tips for friends and family of those living with chronic illness and some personal reflections. Maybe I'll even type in Southern dialect occasionally.
I'm not going to be hiding anything in the way of Dysautonomia because quite frankly, I have encountered too many people ignorant to the reality of it. They have been friends, family, so-called medical professionals, teachers and professors, and the general public. It's not pretty and I'm not going to sugarcoat it. However, I will try to make it as easy to understand as possible, and I will use humor. If I was serious and doom-and-gloom all the time, it would just be too much. I cope through humor (and generous amounts of sarcasm).
So there it is. Thanks for stopping by! Y'all come on back now, ya hear?
Sydney
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