Last summer the doctor told my mother I only had a couple of days to live, but thanks to an amazing neurologist and my mother I am alive, and very slowing getting better.
I have lived with a series of medical problems since I was 9 years old - gastrointestinal, pulmonary, metabolic, neurological. I am now 25. For almost 15 years, I kept getting worse, but I tried to have a normal life. School was my passion and in 2011 I graduated from Chico State, Summa Cum Laude, with a degree in Sociology. My health kept getting worse. The pain was intense. I had extreme sensory overload, so that every stimulus - sight, sound, smell - everything caused pain. By last summer when I was in Stanford Hospital, the pain was so bad that I welcomed the thought of death. Then we met Dr. Azzolino who finally figured out that all of my problems were because my brain was not working right.
I have made a lot of progress in the last 9 months but I have a long recovery road ahead. After 6 months of treatment the pain became less intense, now I can finally sit in a room with other people. I still can not read or watch TV or have much activity around me because it causes sensory overload. My doctors believe I can eventually have a normal life. I hope so. Mom is devoting her life to getting me well. Insurance does not come close to paying my medical costs, and then there are lots of other costs too. I see doctors several times a week for treatment, which costs us about $3000/month and the doctors are in San Francisco - 180 miles away. We drive down there every week! Mom is trying to find us a place to live closer to the doctors so we don't have to drive so much.
When I was little I had lots of dreams of growing up. For several years my only wish was for the pain to go away. BEING HEALTHY IS MY BIGGEST WISH, but I am starting to think maybe there can be more. I dream about going on a date with a nice guy, being able to sit in a restaurant, watch a movie, and read again. I dream about having a family. And I dream about being able to use my sociology degree to help others.
By the way, this is my story, but I had to have someone else write it, because I can't look at a computer without getting severe pain. I will be so grateful for any donations that will allow me to continue to have treatments and get better. The doctors think I need another year of intense treatment.