How my Chronic Illness Turned Me into a Warrior
I never thought it could happen to me, yet it did and it changed my life.
The first time I ever heard about POTS (Postural Orthostatic Tachycardia Syndrome), I was sitting outside of my dance studio with a pounding migraine, while my mom was talking to a fellow dancers mother about this mysterious syndrome. She proceeded to talk about how every day she woke up nauseous and vomited and how this was her life. I, on the other hand have never heard of something so strange. I went home and researched it, but to no avail nothing showed up. I tried looking up “POTTS,” “POTS disease” and others but nothing came up. Never in a million years I thought I would be living her life. This is my story.
In the middle of my freshman year of high school, I developed a gut-wrenching migraine. Right before my English vocabulary midterm, this headache appeared with absolute vengeance. The pain and other symptoms that accompanied it were horrendous and slowly I began to withdraw, as everything I did developed an even worse headache. It followed me wherever I went, like a dark cloud looming over me.
The rest of my freshman year and all through sophomore year, the headache persisted. I was jumping from neurologist to neurologist and being put on many different medications. At one point, I was told it was just anxiety and that a low dose of anti-anxiety medicine would be my saving grace. The summer went by slow and painful (literally), but once junior year hit, my health took a turn for the worst.
Three days into my junior year, I found myself a new residence at The Children’s Hospital of Philadelphia on 9South, the neurology wing, which is every girls paradise. After being taken to the ER, I was being pumped and infused with all different types of medications before being taken up to my palace. Once they started infusing me with a toxic substance called D.H.E45, I did not remember anything about the stay in itself. The only thing I remember is vomiting on my favorite sweatshirt. To this day, I still joke about how that stay gave me amnesia.
Yes, even after the medication and treatments the pain persisted. After noticing some severe staring spells, I was admitted back to 9South for an overnight EEG, in which they measured my brain activity in hopes of finding seizures. I almost hoped that they came back positive, because at this point, I was looking for answers to my chronic pain.
However, as I was about to be discharged, the nurse noticed some significant blood pooling in my extremities and an almost inability to walk straight after laying down. I did a quick orthostatic test, in which from laying to standing my heart went from 95–130, a defining characteristic for POTS syndrome.
Having a diagnosis was so relieving. This was only the beginning of my journey though. From the time of being discharged the second time, to March 3, 2016 ,my health began to decline again. I lost my ability to stay awake in school, due to extreme fatigue, sit up due to orthostatic intolerance and even hold a pencil due to the extreme joint pain. From here through the rest of the summer, it was an absolute horror story. I became a guinea pig for my POTS specialist, and I could not even walk without someone holding me up due to my extreme and rapid syncope.
On top of everything, many medications I was put on, I developed an adverse reaction to many of them. Stimulants gave me a speech impediment so severe, I found myself in the hospital being tested for strokes and Multiple Sclerosis. Other medications caused intensified migraines and even more syncope.
The summer before my senior year, I had no life. My social life became inactive and I was virtually living on the brink of depression from my excruciating pain. At one point, it was so bad that I had to be held up while walking so I would not fall. I vividly remember going to the beach on a family vacation, and not being allowed to go past my ankles in the water for fear of being taken under. My legs were as strong as jello at that point.
On August 15, 2016, I was admitted to a three week Pain Rehab Center at a nationally ranked hospital. I was taught how to exercise and move again. I was taught how to attend
school. I was taught how to build and rebuild relationships and more importantly, how to live my life while enduring these medical anomalies.
Since graduating the program, I have become in charge of my health and my conditions. I no longer write about them asking for pity, I now write about it to send a message of strength.
Many people with POTS eventually develop comorbid conditions including Ehlers- Danlos Syndrome and gastroparesis in which feeding tubes are sometimes needed. I got lucky, I got the opportunity to overcome, and to get a new chance at life.
Overcoming my illness has taught me so many things about myself. Just because I do not outwardly show my suffering on a daily basis, does not mean it does not exist. I still have to fight to get out of bed on a daily basis, attend school full time, and stay social within my circle of friends — but these things are worth fighting for.
Living with a chronic illness does not make me a sickly teenager, it has made me a warrior. Every time I do something new, it feels like the first time again because my life was devoid of so many things that people take for granted. Over time, as I have progressed through my recovery, I have gotten involved with the things I care about like yoga and volunteering. Knowing I have these things in my life have made every step I take a success and makes the fight ten times more rewarding.
The life I live today is one that I never envisioned myself having, with all the strict protocols that I need to follow following my pain rehabilitation program, but in many ways, I am no different from your typical teenage girl. My life comes with a bigger fight, but I wouldn’t want it any other way.
One of the most influential people who has changed my life Baron Baptise, founder of Baptise yoga said these profound words, “All the work you’ve done up until now has been to lead you to this precise moment, to face precisely what you’re facing”.