Who would have thought my entire life would change on a Tuesday in April of 2021? Navigating a pandemic is hard enough when you’re healthy, let alone when your world gets turned upside down by an ITP diagnosis.
There were signs I completely ignored in the weeks leading up to my diagnosis. My period was unusually heavy, but I shrugged it off. I’d floss my teeth and my gums would still be bleeding the next morning, but I just thought it meant I should floss more often. A chip clip snagged my arm, giving me a large bruise, and I just laughed at my clumsiness.
Then one morning I woke up with what I assumed was heat rash on my chest and arms – I thought it was odd but didn’t give it much thought beyond that. But as the day went on, it continued to spread across my body, and when I noticed the spots inside my mouth, I started to worry that something else was going on. By the evening my body was covered, and my boyfriend thankfully convinced me to go to urgent care, even as I insisted that we should wait another day. Urgent care recognized it as petechiae right away and sent me straight to the emergency room.
Sitting in the ER, I remember thinking that this was all silly and that I was only having an allergic reaction, and I started ordering a pizza to pick up later that evening. Just as I was about to confirm my order, the doctor rushed in to tell me my platelets were very low, down to 2,000. I had no concept of what that actually meant, and as many doctors and nurses started swarming over me, I kept joking about how I felt like I was in an episode of Grey’s Anatomy.
After almost a week in the hospital with a couple of platelet transfusions, 80 milligrams of prednisone a day (which is a LOT!), and four rounds of IVIG, my platelets were finally at a safe enough level for me to be discharged. I thought for sure the journey was over, not knowing it was only just beginning.
The first few months were the hardest – so many ups and downs, and it felt like my life revolved around weekly hematologist visits. While I was so fortunate to have such a supportive network of family, friends, and colleagues, it also felt isolating, like I was the only one going through this experience. I started getting involved in the PDSA Facebook Group, and when I saw there were support groups around the country but not one for New York City, I knew exactly what I needed to do. I reached out to PDSA, and they were incredibly helpful in organizing and empowering me to lead a brand-new support group! The NYC support group has been a game-changer for me, and it has been so helpful to have others locally to share challenges, laugh, and feel an instant connection with.
As I inch closer to the one-year mark of my diagnosis, I’ve been shifting my mindset from wondering when this will finally end to how I can monitor and maintain my platelet count in a way that doesn’t disrupt my life. It’s not always easy, and sometimes it’s a day-to-day process, but I am so grateful to the PDSA community for helping me through it!