On November 5th, 2018 I was admitted to Presbyterian Hospital in Charlotte, NC, unaware that I would remain in the hospital until April 26th, 2019, only being discharged for about 12 hours during those long 6 months.
Ironically, I had quit my job I was working at for almost 4 years, eager to do something I was passionate about. I decided to leave the world of agency recruiting and go to school for Real Estate. I would have been without health insurance but decided that since I was driving so many miles per week to go to school, it was best to get on a plan.
I started school in mid September of 2018 and prior to that had been struggling with an ongoing sinus infection. From mid September up until November, I saw four different doctors. On September 22nd 2018, I woke up on my friend’s wedding day with terrible joint pain in my knees. It was the first day I was off of antibiotics for my sinus infection. I didn’t think much of it; I thought I maybe slept in a different position since I was crashing on a friends couch.
By the end of the weekend, I was struggling to walk down the stairs. When I flew back to Charlotte and hopped in an Uber to get to my house, I ended up talking to the driver the whole way home. She was probably in her mid to late twenties like me, and was fighting cancer. While she was telling me her story, I couldn’t help but think that something wasn’t quite right with me. As cliche as this sounds, it seemed like a sign that I was in this person’s car at that particular moment listening to her story.
Once chest pain started to occur on top of the joint pain, I scheduled a doctor’s appointment right away. Since I didn’t have a great health insurance plan, I turned down my doctor’s advice to get a chest X-ray. He didn’t see any swelling around my knees and told me to come back if symptoms got worse.
Well, they got a lot worse. More joint pain, still in my knees but now in my shoulders as well, making daily activities seem extremely difficult. Luckily I was taking the Real Estate course with a friend, and she witnessed me struggle to walk into class more and more each day.
A girl I connected with over the summer who has the same autoimmune disease once called Prednisone “Satan’s Tic Tacs.” It was the only drug that seemed to mask my symptoms but it makes you irritable, puffy, and hungry. Not a great combination.
Once the doctors saw that the Prednisone was masking my symptoms, and every time I finished the pack the symptoms got worse and new ones arose; they knew it was something more.
I want to tell my story to bring awareness to this invisible illness I’m fighting. My goal is to help others realize that it is okay to get a second opinion and advocate for yourself even if you find yourself in one of the best hospitals with some of the best care.
Dear Vasculitis 