I have been thinking about writing this for a few days and I kept coming up blank – where do you start? I can’t think of a concrete moment of where I knew my life changed for good. I was pretty healthy growing up, though not a very active child I never had any broken bones or dislocations. I quit volleyball in 7th grade because my knees hurt too much, but that subsided once I stopped squatting every day. Other than knee issues, I was a pretty healthy child.
Throughout college and my early twenties I remained pretty healthy, aside from chronic sinus infections. Surprisingly, while living in Paris I developed CHICKEN POX! Yes – Chicken Pox. I was not vaccinated as a child as we believed I had a mild case as an infant. Well.. let me tell you… it was miserable. But, that’s the worst of it.
In spring of 2018 I was walking to work and tripped over sidewalk, falling head first into a building. I’m very stubborn, so I continued my commute to work. Once I got to work I realized just how hard I hit my head and had my fiancé take me to the emergency room. It took awhile to be seen but they eventually diagnosed me with a concussion and told me to take some time off of work. I wish I knew at the time how important screen rest was, but I worked from home for the week instead of actually taking time off. I did about 8 weeks of physical therapy for my shoulder, as I injured it during the fall. While it helped some, I never seemed to fully heal from the incident.
My neck pain never subsided and the rest of my body slowly started aching as time went on – my knuckles started hurting. I noticed pain in my elbows and wrists. I finally saw a wonderful GP who ran the right tests and sent me to a rheumatologist. As soon as he saw me he was pretty confident that I had something called Non-Radiographic Spondyloarthritis and Raynauds disease. We started a treatment regimen of immunosuppressants – over time I’ve tried a variety of methotrexate dosages and types of biologics.
Honestly, over time I haven’t felt much relief. Since my initial diagnosis, I have felt my health and strength slowly decline. Prior to COVID-19, I was going to Physical Therapy as frequently as insurance would allow, but I’ve definitely been missing out lately. In late 2020 the diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) was added to my diagnosis list. This one was not a surprise – I fainted once in high school and have always dealt with issues of dizziness, nausea, and overall orthostatic intolerance.
I’m really excited to have this blog to write about my experiences and try to teach others about the diagnoses I have. If you have any questions, feel free to comment below!