Are you the original Benjamin Button?
I was 13 months old when I was diagnosed with Pauciarticular Juvenile Rheumatoid/ Idiopathic Arthritis. So, yes. I prefer to go by Jilly-Bean Button though ;)
300,000 children suffer from Arthritis and I work every single week to make sure that these kiddos get the best treatments (both mental and physical) available to them. I was fortunate to have the best parents and family support growing up. Every child deserves that.
What do you actually do at Arthritis Camp?
There are currently about 1,800 campers at 42 camps around the country! I have had the pleasure of volunteering at Camp Dartmouth-Hitchcock in Vermont and Camp JAM in Oregon.
I get this question a lot-- we do activities that you'd normally see at a children or family camp. We canoe, we do ropes courses, we play capture the flag, we hike, do arts and crafts, perform acts, have pool or lake parties, cook smores, and play like kids deserve to! There's just one catch...
The camps are designed for patients. This means that there may be rest times between activities, where children must elevate their legs. We also pay extremely close attention to the fatigue levels and symptoms of each child. This means memorizing their medical backgrounds and family lifestyles.
In addition, and most importantly, these camps are designed for all possible scenarios, including flare ups, anaphylaxis, and other severe issues, such as heart attacks. This means that there are nurses, primary care physicians (PCP), and Rheumatologists on staff and on-site at all times.
This is a crucial detail for many families-- this allows children the freedom to be a child, but also to make sure that they are administered their medications and under extremely good care in case their body were to have a bad response to medication or have a flare up.
What is a Spoonie?
I could talk about this all day...and I do! Why? Because a spoon is a term that we use to identify an energy source.
A "Spoonie" is a term that refers to a person, usually a patient with a chronic illness or autoimmune disease or deficiency that identifies with or resinates with a theory known as "The Spoon Theory", written by the famous Christine who writes on her blog, "butyoudontlooksick.com".
When you have a chronic illness or autoimmune disease, it's important to contantly be checking in with your body to make sure you have enough energy, or in our language, enough "spoons".
In the early 2000's a blogger posted an analogy she used, involving spoons, to explain to her friend what it was like to live with a chronic illness. They were sitting at a diner and the patient, Christine, provided all of the surrounding tables' spoons to the friend. There were twelve spoons total. Christine explained that for every task the friend was to complete, it would cost one spoon. The friend goes about her day only to realize that she had run out of spoons.
She then concluded that THAT is exactly what it feels like to live with a chronic illness.
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