I remember like it was yesterday when the gastroenterologist told me I had PSC. I had no idea what that was and what it meant. She wanted to send my biopsy out for a second opinion and it was confirmed. For a while I figured if I ignored it it wouldn't matter but the truth is it did matter.
The information is limited as to describing the disease and the process that happens. Working as a health information management specialist at a home care agency I learned that there is always ways to find information. One of the most discouraging things though was not many doctors in the Philadelphia area are familiar with PSC and there are no support groups here. I am not one for getting into a lot of discussions but it would be nice to meet people face to face and talk about how you are making it through.
I have only come across one other forum which is PSC Partners. I wished that I could have made it to the conference last year but I was unable to do so. I created my own blog to talk about what is happening to me. Each day is a challenge because of the fatigue or feeling like everything I eat just makes me ill.
I know that I can still live a active life and I am choosing to do what I can to make it happen. So each day is a blessing no matter the outcome.
My blog site is www.reinaphoenixnoir.blogspot.com stop by and say hello when you have a moment.