A JOYFUL NOISE

Let me start out my explaining that this post and health update has absolutely nothing to do with my chronic pain issues that are located in my abdomen and the back of the left side of my head.   I have several complex health issues and I know that it can get confusing at time; and believe, me sometimes when I tell my parents “I’m in pain” my Mom has to have me clarify what type of pain or where is the pain I have.    It’s a bit frustrating.   So, I decided to start out this update by saying up front that this health update has NOTHING to do with my chronic head pain/abdominal pain.    This update has to do with my genetic disorder that I have battled with all my life.   This genetic disorder is called Neurofibrimototis. Background: For a couple of years, I have had on again off again pain at the right side of my temple all the way behind my ear.   I put up with it because the pain wasn’t nearly as bad when compared to the other pain I was...

For as long as I can remember, I have always joked around with others (and probably ultimately teased myself) that UVA Hospital is my “home away from home” and that the hospital and staff is my “second family.”    The thing is, everything about that statement is true.    I see/know nurses who remember me since I was a baby; I have doctors who have worked with me since I was no more than 3 years old or even some who has known me as a baby (and still in practice!).    This healthcare team will never be forgotten.   I’m always grateful for these wonderful UVA caretakers. As most of you know for the past 4 ½ years, I’ve struggled a lot physically.   I’ve been bounced from doctor to doctor.    Finally, I think I’ve found doctors (at UVA) who is willing to work with me, spend time with me, work with my other doctors, and NOT give up on me.     Today, I had a follow up appointment with one of my (many favorite) doctors. ...