I'm 54 And Still Here....I have not had a diagnosis until a few days ago. My life has been a health nightmare since birth. Straight into an incubator. I have had MANY surgeries, the left lobe of my liver removed, 3 surgeries on an ear that still does not have an eardrum, a tube and ovary and bowel surgery ~ on and on for 54 years. Then when I went for my 5 year checkup on my liver they discovered my abdominal aorta dissected itself. I'm alive to talk about it but this diagnosis has me quite down. Glad to have a diagnosis at last but wish it could have been different. Since the aorta dissection I am in so much pain it's ridiculous. I am a happy person and I went camping for 3 days and had a very therapeutic rest, met new friends and had a very good time. By the 3rd day I sure needed to get back to my comfy bed.
This diagnosis is still hitting me in shock waves and I find myself suddenly in tears. I feel like I am mourning my own death. Meanwhile I'm kind of standing at death's doorstep. Dr.'s keep telling me I'm a ticking time bomb and I told them that we all are and that they need to stop talking to me like alarmists. It's not helpful. I know that I am in a very precarious position right now. Meditation and eastern medicine, acupuncture and massage are the modalities that work for me.
This is a beginning to finding some support. I'm 54. I'm tired of being a "freak of nature" that Dr.'s can't explain so at least I have a diagnosis. They still don't know enough about it so that most Dr.'s really don't know what they are dealing with. I guess in a way, we're kind of on our own for the most part.