I was 20, a junior in college, I was studying Human Services and Counseling. I wanted to be an Art Therapist. I had plans. I was going to graduate college with a 3.5 or higher GPA and go to the University of Louisville for my Master’s degree in Art Therapy. I wanted to open my own practice and help people through art. That was my dream, but life had other plans...
My senior year of college, I started feeling more and more under the weather. I started sleeping less and couldn’t work out like I normally could. I started sleeping more because my energy was off. I started missing more of my classes because I just couldn’t get out of bed. I was having migraines that made my head feel like a stack of bricks was piled on top of it. Something wasn’t right. I knew my auto-immune disease could flare up at any time, but this didn’t feel like a normal flare up...
A bit of background. I was diagnosed with dysautonomia when I was 14, and I had been fighting illness since I was 10 years old. Dysautonomia is an auto immune disease that attacks the nervous system. It affects the bodily processes that aren’t consciously controlled. Things like heart, lungs, digestive tract functions. It’s an umbrella term that covers multiple auto immune diseases. It can make life unbearable at times because of how many bodily functions it can interfere with.
I had gotten used to my life dealing with Dysautonomia, and in many ways, I’d learned how to function despite the illness. However, when I started feeling more and more ill, I knew something wasn’t right. The headaches became unbearable, I couldn’t work and I couldn’t get to class. My doctor ordered an MRI, which showed irregularities in the fluid build up. That led to a spinal tap, which showed the fluid around my brain was highly elevated. They drained the fluid during the spinal tap, and sent it off for testing. In the meantime I still felt tired and completely drained. In the short month the tests for the spinal fluid took to come back, my headaches began to get worse. The doctors ordered another spinal tap. This showed that my spinal fluid had already become elevated again. This was a major concern.
After managing and graduating college; the next months were filled with monthly spinal taps and multiple doctors’ visits. Until a neurosurgeon discovered I had Intracranial Stenosis, which is a fancy term for the veins that carry my spinal fluid from my brain were narrowed and unable to function properly. This was paired with hydrocephalus, which is too much fluid around the brain. The increased pressure around the brain is what was causing the migraines. The only way to solve this was brain surgery... I had 2 options. A stent or a shunt. A stent was something that was less invasive and widened the narrow veins to allow the fluid to pass, the shunt was fully invasive cutting open my head to place a tube from my brain to my stomach that was attached to a pump that took the fluid off my brain. The stent was the chosen option because I was fond of the idea of getting cut open.
It was January 15, 2019... I remember waking up from the stent surgery to be told it failed... the vein was to narrow to fit the stent in and it wouldn’t stretch. My heart dropped. I could only cry because I knew this meant the only option was a shunt, or have spinal taps every month for the rest of my life.
It would be 2 months before my next surgery. My body continued to be exhausted and I continued feeling defeated. I mean not 2 years prior I was traveling the world and I had graduated college. I felt the world crashing down around me. My hopes and dreams gone up in flames...
I just cried so much in the following months, leading up to the next surgery. Depression set in and the reality that I may never be back to my old self felt crushing to me. When the time came, I was so scared. Half my head would be shaved and doctors would be cutting into my brain... it was a terrifying idea. I remember the first words out of my mouth when I woke up... “Did it work?” And when the doctor told me “yes, it worked” I sighed in relief and fell asleep. I was so thankful; despite being majorly bummed out about my hair!
Fast forward about 2 months, I still wasn’t feeling great. The headaches were gone, but the exhaustion was still so bad. I would get dizzy standing up or even sitting at home. The doctors sent me to a cardiologist. The cardiologist ordered a tilt table test. This is a test that puts you at a certain angle that makes your body react to bring forward the hiding illnesses. This test showed the reason I was so exhausted. My heart stopped on that table, and suddenly everything started falling together. I was diagnosed with Neurocardiogenic Syncope, meaning my heart doesn’t retain fluid around my heart and it makes it stop. One parT of my body has too much fluid, the other not enough, what are the odds!
This changed my diet to high sodium and the need to constantly be aware of how my body feels. My heart can stop whenever. I have to be hyper aware of how I feel to be able to intervene should I feel a spell coming on. I’m currently still battling my heart condition and trying to stabilize it.
My life went from being all about my dreams and fulfilling them, to doctor’s visits and fighting for disability. Everything changed so fast. I was excited to start my career. I’d be lying if I said I was ok with how things turned out. I feel anger, depression, anxiety. I lost a future I had dreamed about for years, but I had people who supported me. I relied on the love of my friends and family. So, should life happen and throw a curveball for you, lean on those who are there for you. Whether that’s family, friends, or even your pets, their love can pull you through.
Sure it will be hard, you’ll be angry, that’s ok, but don’t dwell on it. Make new plans. Find new ways to be happy. Life for me is more about the little things now. You’ll make it through! I know I will.
For more info on Dysautonomia go to:
http://www.dysautonomiainternational.org/page.php?ID=34
