Between The Autoimmune Cluster & A Freelance Lifestyle
Look at all these great things that are happening!
I have solidified my career as a freelance musician, educator, and writer, I was accepted into some incredible graduate programs (Eastman – my ultimate choice, Harvard, and Syracuse University), I just got engaged to my incredible fiancé, we have the two greatest pets on the face of this decaying planet nestled in our beautiful home – well, apartment – in a town called the Neighborhood of the Arts. It’s sounds dreamy because it is dreamy, people of the internet.
What could possibly go wrong?
The thing is, life had gone pretty wrong two years prior to all of this beauty. The inimitable saying “bad things come in threes” couldn’t have been any more truthful between May and June of 2017. This shift over the course of six weeks - exactly two years ago - would change the way I live for years to come.
Let’s backtrack to 2009 for a hot second… I was sixteen. I had gone to a regularly-scheduled pediatrics appointment. I had the best doctor. I felt so comfortable under Dr. Pizzaro’s care. Though a fussy eater, I had no prior health complications. She noticed that at sixteen, I wasn’t as ‘developed’ as the other teenagers and referred me to a health specialist in Syracuse, New York – an hour away from my Utica upbringing.
Several scans, blood tests, and studies later, I had been diagnosed with ‘delayed puberty,’ which soon shifted over to a diagnosis of primary ovarian failure. Essentially, I had begun the puberty phase, but my white cells attacked my ovaries – successfully – which ultimately brought my body’s rate of maturity to a halt. This first diagnosis also translated to the news of not being able to have my own children. My parents were devastated, but I was sixteen. I saw myself as a workaholic with hopes of becoming a musician specializing in woodwind performance.
Fast forward to 2012, I had transferred from my two-year college (Onondaga Community College) to SUNY Potsdam’s Crane School of Music. Having been on proper medication to continue the normal human development process (estrogen patch, progesterone pill), I had noticed my energy levels were all out of whack. Assuming it was just the stressors of college, I had noticed that my appetite grew and that my weight significantly decreased. This translated to my thyroid being out of whack, and thyroidism was added to my medical history. Although my appearance on the outside looked normal, my energy felt like it was being stripped away.
In 2015, I moved in with my now fiancé and a dear friend of ours to Rochester’s Neighborhood of the Arts. The process to become a full-fledged freelancer was absolutely not easy. I began working in arts administration. With little to no energy on a daily basis, rapid weight gain, and a sea of second guessing my career path due to rejection, I knew that arts administration was not for me. I decided to take things easy with a part-time job while attempting to build my private woodwinds studio and get my energy back.
Nothing had been working. After living here for a year and a half, I finally landed an endocrinologist; a doctor who specializes on the endocrine system and potential risks for endocrine-related diseases. At the end of April 2017, I had reached out to this endocrinologist with a list of symptoms:
Loss of appetite
Constipation
Chugging water like a maniac
Frequent urination from said chugging
Dehydration from said chugging and frequent urination
Rapid heart rate
Heavy breathing from said rapid heart rate
Massive fatigue
Gradually sleeping for twelve to fifteen hours at a time from said massive fatigue
Weight loss of thirty pounds over the course of three months
These symptoms had gone on for four days straight. My stubborn Welsh-self mustered up the courage to eventually go to an urgent care… they took no vitals. They didn’t take my insurance. Two hundred and thirty dollars later, I was diagnosed with anxiety.
Two to three days later, I woke up from yet another nap from all that fatigue. I begged Alex to call his mom – a nurse – to see what we should do. She urged us to go to the ER right away.
That night, I found out the problem; my white blood cells – yet again. This time, the white blood cells successfully attacked my pancreas, making me a type one diabetic. I had a three-chain autoimmune cluster. With tragic things occurring in threes, my childhood pup passed away and my parents split. These three things, along with not having a clue with what to do with my career, I grew anxious and depressed. Had I not had Alex by my side, I’d be completely and utterly lost.
The greatest challenge throughout the last ten years of carrying around an ever-growing autoimmune cluster has been none other than self-advocating. I’m sure I’m not the first person to express my share of unfortunate events with my local medical center. The first hurdle that I learned – especially once I got accustomed to living on my own, was to write my questions down and speak up for myself and how my body is feeling. Alongside this struggle, my local medical center is known to be an incredible facility. However, my luck of getting to see my endocrinologist has been a rare delicacy (no matter how much or how loud I speak up). When I receive a nurse practitioner in lieu of seeing my primary endocrinologist, it insults me to know just how little time they have invested in looking into my charts before the appointment. Failing to cover all grounds between my diabetes, thyroidism, ovarian failure, and the strands of problems within each subject line that come up along the way.
As a freelancer, how does one overcome these challenges in order to become the best version of one’s self? Like fellow liveabetic Jennifer Stone (Wizard of Waverly Place) described it: “the way you’d eat an elephant… one bite at a time.” In addition, a lot of breathing, a lot of family and friend time, investing in a planner and using it all the time, taking time away from social media & emails, and a lot of insulin so I can enjoy food like everybody else.
The calm after the storm…
That July (2017), after teaching at an arts camp, I beggingly asked Alex when we could look into getting our first pet. Having grown up with cats & a dog, I surely began to feel that void post-undergrad. That evening, I got to work at my part-time job to find two kittens in the coat room of my office. They were just five weeks old and were rescued that morning from the hood of a vehicle.
I took them home. My mom came up to visit, helped clean them up and get them situated in our apartment. Our roommate was allergic but – by fate – he was about to move out the following week. They are just about to turn two. Since then, I have been fortunate enough to find my place in Rochester’s reputable arts community as a freelance woodwinds musician (mostly for musical theatre productions), a substitute teacher who is soon to go to grad school, a private lesson teacher, and a writer to share my story with those who are striving for the same arts-faceted lifestyle. After all of these trials and tribulations, I have truly become a triple-threat and am beyond blessed to be able to live my best, creative lifestyle.
