Chaylee M.:

Spoonful of Gems

April 28, 2023

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3 min read

Symptoms and Darkness

In March of 2022, I started to experience some concerning symptoms. I had extreme fatigue, joint pain, weakness, swollen fingers, stiffness, headaches, and more. It was my senior year of high school, and I was taking college classes. The fatigue was so debilitating it was challenging to finish all of my school work, but in May of 2022, I graduated with honors and 21 college credits. I had big aspirations to go to college to pursue a bachelor’s degree in Social Work so that I could help children in need. I had received so many scholarships that I was being paid to attend school, but the first day of college was a disaster. I planned to do my classes online, but I was so weak it was difficult to pick up my laptop. I felt overwhelmed and knew I needed help. If I decided to withdraw from my classes, I would lose all the scholarships I had worked so hard for and give up my dream. I was afraid of what would happen if I quit, but that Wednesday, I gave the school back my scholarship money and unenrolled. That day felt like a horror movie. It was storming, and the sky was grey. The universe mocked me as I hit the button to withdraw. Lightning and thunder struck all at once, and the power went out in my house. I was left in the dark, just like my future.

How I Got Diagnosed

After un-enrolling in college, I decided I needed to be with my mom. My mom moved five hours away from me at the beginning of the summer. However, my diagnosis journey began in June 2022. I saw a local rheumatologist, hoping I would get the answers I was seeking. My mom has lupus, so I believed that lupus was the answer the entire time. I saw what my mom went through all my life, and my symptoms were similar. My primary care doctor and rheumatologist said that my ANA test was negative. I only had one visit with that specific rheumatologist. I was not examined and didn’t receive any specialized tests. Instead, I was told I had fibromyalgia. I knew I did not have fibromyalgia, but he was the only doctor in the area.

In September 2022, my boyfriend and I packed our things to move in with my mom and her husband. My mom has always been my biggest supporter, and she is also my biggest advocate. She fought for me to see the rheumatologist she sees. It took three months to get in, and that appointment changed my life. The rheumatologist told me to remove my shoes and examined my feet, nails, and hair. She looked at me and asked, “Have you been diagnosed with psoriasis?” I said, “Yes, but I just have it on my scalp and don’t pay any attention to it anymore since I’ve had it since I was a preteen.” She then said, “I believe you have psoriatic arthritis.”

Treatment

My rheumatologist ran more blood panels and discovered that I had high inflammation levels. She conducted an ultrasound on my hands, which showed mild arthritis and tendonitis. I never thought that my psoriasis was connected to my other health conditions. I didn’t even know that psoriatic arthritis was a condition you could get. Nevertheless, I felt relieved to have a diagnosis and an accurate explanation of my symptoms. Thankfully, I did not have any damage to my joints yet, but I needed to start some sort of treatment since it is a progressive disease. I started taking Celebrex, but it did not improve my symptoms. I am now on methotrexate, a minor form of chemotherapy. Many people do not like this drug, and I was skeptical of it, but it has helped my joint pain quite a bit. Every treatment option has its positives and negatives, but any improvement is an improvement that I have to celebrate. I am still experimenting with what works for me and my life, but without methotrexate, I would still be bedridden.

In February 2023, I was tired of being unable to support myself, feeling alone, and being tired. I was inspired to create and came up with the idea for my jewelry store, Spoonfulofgems. Spoonfulofgems is a Depop shop where I sell jewelry representing the spoon theory. The spoon theory is a wonderful way to describe how a chronic illness affects a person’s energy. Christine Miserandino created the theory in 2003 when she was in a diner and wanted to explain how living with lupus felt to her friend. I craft necklaces, earrings, bracelets, bookmarks, and keychains with spoon charms. I’ve just started, but I appreciate every sale I get. Every sale forces me to get up despite the pain and do something I enjoy.

I have a TikTok and Instagram (@spoonfulofgems) that promotes my jewelry and is a community for people with chronic illnesses. On those accounts, I talk about my medication and things that help me, like compression gloves, and I get to know others like myself. Having something to do has helped my mental and physical health immensely, but I still struggle because I am not where I want to be. I wanted to be in college, and I wanted to be working a normal job, but I am slowly accepting my “new normal.” There is always a possibility that I will still be able to accomplish those goals in the future, or I may create completely new ones.