Welcome to The Chauncey Life!
This blog is about me, Chauncey. I created this space to share my experiences dealing with chronic illness and pain associated with Sickle Cell Anemia/trait and Beta Thalassemia trait. In September 2016, I was rushed to the ER after experiencing symptoms of paralysis, numbness, tingling, and pain in my legs. At first, it was thought that I suffered from Gillian-Barre Syndrome, but since my symptoms stayed in my legs and didn’t travel up my body, the doctors ruled it out. That said, they could not determine the cause for my problems. After stabilizing, I was given medication and referred to Neurologists and Rheumatologists, but they were all stumped as well.
Eventually, I was referred to physical therapy, which helped, and I was able to go back to work. I used a special cane that had a built in seat and that gave me back some mobility. I wore braces on my legs and ankles to maintain my stability. I continued to see several other doctors over the years but none could figure out the main cause of my issues. As you can imagine, it was exhausting and frustrating to deal with the pain and lack of mobility while not getting any closer to finding answers. I still had to work and pay my bills. I was extremely stressed out. All the medications were taking their toll on my mental and physical health so I turned to holistic medicine and discovered I was sensitive to foods like gluten, dairy, nightshades veggies, and certain additives like maltodextrin, potato starch, and high fructose corn syrup. They contributed to the swelling and inflammation in my joints. I got better after limited and even cutting those things out. They say you are what you eat so I had a careful diet and eliminated some medications I was on. Good thing too as most of the medications I tended to react badly to.
Sickle Cell causes red blood cells to develop an abnormal shape which can reduce the amount of oxygen in the blood and cause complications such as strokes, heart attacks, and blood cots, all of which I’ve had at one point or another over the last 10 years. Beta Thalassemia causes an imbalance of vitamins and minerals in the blood such as iron and magnesium. This can also cause swelling and inflammation in the joints like Sickle Cell. Strong bouts of full body pain caused by Sickle Cell called Pain Crisis can occur at any time or even due to stress or allergic reactions or other environmental triggers. Growing up, I was a normal kid who was very active in sports but there was always something off that I couldn’t describe. Shortness of breath, back pain, joint pain, swelling. But I was told it was just growing pains so I pushed on. 2016 was the year that changed the course of my life. My career has gotten derailed a few times, my health destabilizes, and my life falls apart. But I try to get back up every time and keep moving on.
I’m a 30-something aspiring librarian who loves books, computers, books, movies, books, crafts, books, writing, books, and did I mention books? I also dabble in video games, bullet journaling, coloring, and collecting stuffed animals. This is a safe space where I advocate for disability and Sickle Cell Awareness. I’ll share my experiences dealing with my conditions, the highs and lows. Feel free to share yours as well. You are not alone, we are in this together. Thank you for being here. You matter, you are important, and you are you.
-Chauncey
The Chauncey Life 