Realville

Trying to make regular posts is getting hard! I haven't felt like doing much and when I do feel like writing, things come out so serious and sappy - I guess I'm just not myself right now. I am struggling for sass.

I am feeling better this week except for the ITCHING!!! This is the one symptom I have had off and on for a few years that has driven me to find a diagnosis. It has really stumped all my doctors who wrote PSC off, saying I was too young and healthy to have this disease. It is the most irritating thing I have ever experienced and has kept me up countless nights. Trying to explain it is even worse - It's like I'm itching from the inside!  Usually it goes away after a few days or maybe a week, but I have been struggling with this episode for 2 weeks, which leads me to believe that it is permanent. UGH!!! It has made me feel so sorry for myself and hopeless because I know this is only the beginning.

I have also had some funny experiences with people these last few weeks. I have gotten so many calls and texts from people who are researching this disease for me. It usually starts with them saying, "I know you are probably sick of people telling you what they have read, but . . . "  Well guess what? I am NOT sick of it. One of the reasons I want to share my experience is because I know that somewhere there is a distant relative, or a guy in your neighborhood who is experiencing the same thing. I want to know about them and anyone else who has gone through it.

About two years ago I wrote a frustrating rant on Facebook about my symptoms and received a message from a high school friend who is now a doctor. He told me about PSC and said it sounded like a possibility considering my other medical conditions. Even though it was early and my symptoms were few and far between, I kept that information close and asked every doctor about it. It took a few tries, but I finally got one who agreed to consider the possibility.

I want to hear about your neighbor or your cousin! I want to hear about Chris Ledeux and Walter Payton - even though they didn't make it. I want to hear about Kris Klug - an Olympic snowboarder who has done great after his transplant, or Jamie Redford - the son of Robert Redford - who has had TWO liver transplants and lives a great life. I need reality and hope.