Spoonie Friends

Yesterday was my best friends birthday. He turned 22. He is also a spoonie, and though both of us have been sick for a while we never really were in the community nor did we talk about it until recently. But having someone who knows me really well and who is able to relate to…

Gastropariesis Awareness Month

This month is Gastropariesis awareness month and lately, the disease thats co-morbid to my EDS has been running my life. It tells me what to eat, when to go to the bathroom, when to sleep, Its just that I cant take it anymore. I just want to do whatever I want. The constant nausea is…

Family and Chronic Illness

Family, you cant choose them right? You also can’t choose what questions and attitudes they have about your illness. Take for example my 87 year old grandmother who I went to visit this week. She had so many questions, invasive, and otherwise about my illness. This was the first time I visited her since my…

NCIL Conference: The Amazing Disability Community

Last week I had the opportunity to attend the national conference of the National Council on Independent Living, henceforth known as NCIL. There were more than 1500 people there from across the country and the disabled community. I met so many amazing advocates, especially youth who do work at the local, state, and national level.…