I’ve come to accept that chronic illness is part of my life. I still celebrate many joys in life, including my husband, my family, my friends, and our little kitty. I was diagnosed with Fibromyalgia in 2007, though I had been experiencing symptoms for years prior. In 2011, I was misdiagnosed with lymphoma due to a large tumor in my chest. This tumor was found to be Unicentric Castleman’s Disease (hyaline-vascular) and was removed during an aggressive surgery. I got progressively worse after the surgery and after many years of tests, I saw specialists at Stanford in early 2016 who diagnosed with me with an exaggerated case of hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyper-POTs), a type of Dysautonomia. It appears I already had POTs before my tumor, but that the tumor and/or the surgery physically damaged my vagus nerve, exaggerating the condition.
I am passionate about life and I’m always seeking ways to adapt and to appreciate what I do have. I’m an avid crafter and especially enjoy making clothing and jewelry- especially costumes. I’m not always up for a day at the sewing machine, so I’ve been checking out more restful crafts like beaded embroidery. I also love to go to events to see extreme club wear or ornate costumes. I keep buying tickets to these things even if I can only stay for a short while. I am a big fan of nature and love to explore. I’m very fortunate to live in Southern California where I am near beaches, hills, mountains, and all sorts of beauty. Even when I don’t get to leave the house, I have a beautiful view of trees and a valley from my living room. Social justice is another passion of mine and I have a history of doing volunteer work for a variety of causes. I admit, I am having trouble keeping up in this department, but it usually doesn’t take me too long between volunteer jobs to get involved again.
I’m writing this blog mostly for myself, but I do hope to connect with others as well. I want to get into crafting and coping, the fun stuff and the stuff I just need to deal with.