Living with Illness, Giving Back to Others
Walking the halls of Orlando Health Arnold Palmer Hospital for Children, it’s not uncommon to come across the familiar faces of patients who are routinely admitted. Dayna Chavarria is one of those patients.
Admitted to Arnold Palmer Hospital frequently since she was a little girl, Dayna is now 16 and learning how to live life with Juvenile Rheumatoid Arthritis (RA), a chronic illness that causes symptoms like persistent joint pain, eye inflammation and stiffness. Some children diagnosed with Juvenile RA may only experience symptoms for a few months, while others like Dayna, have symptoms for the rest of their lives.
What is it like to be a teenager with a chronic illness?
It’s difficult, because every morning is a wild card. I'll never know when or how sick I'm going to feel.
How has having a chronic illness affected your everyday life?
Difficult, but in the same sense, eye-opening. I know that every day is always going to be different. My sister told me about the spoon theory. How every day, we are dealt a certain number of spoons to get tasks done. If a healthy person has 60, I only have 40. So, after getting everything I need to get done, I may only have one spoon left. After I’m spent, I’m unable to accomplish anything else without help. To keep my spoon count at its highest, I try to maintain a healthy diet and push myself to work out regularly. Having a chronic illness has ruined some friendships, but I have matured in an emotional way.
If you could give advice to another teenager with a chronic illness, what would you tell them?
Have courage. I know getting bad news or test results and going to a lot of appointments is tiring and you just want answers. Be patient and always speak up when you have questions.
Have you built any special relationships with doctors and/or nurses at Arnold Palmer Hospital that you would like to highlight?
Everyone I've met – doctors, nurses, social workers, and even the people who work in food service.
One doctor really influenced my care at the start of my treatment and has impacted my life tremendously – Blaine Pitts, MD, Palliative & Supportive Care. He went above and beyond for me. When my pain and symptoms had become overwhelming, Dr. Pitts made sure my voice was heard. He was very compassionate and caring, through all my treatments. Because of him, my pseudotumor was discovered. He then took it upon himself, to send me on a day of adventure. Dr. Pitts knew I loved makeup and sent me and my sister to a make-over at Sephora and a hair salon. I felt super special despite how I felt.
I wish I had a way to recognize all my doctors and the hospital staff for all their love, support, patience and understanding when it came to my health and concerns.
How have Dr. Pitts and the Palliative Care team helped you cope with your pain?
Dr. Pitts and his team helped by giving me so much information about my illnesses, different medications and which had the least amount of side effects. They were also able to explain what was going on with my body. Dr. Pitts always validated how I was feeling.
How has your experience at Arnold Palmer Hospital inspired you to give back to others?
Being at Arnold Palmer Hospital and having been there a lot, I've met many different people from many walks of life. From tragedies to unexpected visits, and people with chronic illnesses, I have always noticed a pattern. While at the hospital, my mom and I came up with an idea to start a foundation. The foundation would help children with chronic illnesses pay for medical bills or medicine.
Right now, we are giving back to the hospital by putting together and distributing care kit bags to families that have come to the hospital quickly and didn't have time to pack a bag. The kits include items like shampoo, toothbrushes, a nail file, deodorant and more. Almost everything you'd need for an overnight stay to make it just a tiny bit more comfortable!
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