When Thursdays rolls around I often begin my day by asking what should I say today to my group?
What can I say that would matter? What would make a difference in someone's day?
Maybe all I can say is that "it's ok". You are "ok". I had PBC for 20 years before I was listed on the transplant list. I know that may scare some of you saying " I've already had PBC for 20 years!" Not what will happen to me?! Please remember that being diagnosed back in 1985, the knowledge and the treatments available were SO limited. Even hepatologists, I dare say, knew very little about this rare disease. I mentioned yesterday that I have had 9 liver biopsies - that was the only means of knowing if the disease was progressing - and that was if the doc doing the biopsy knew what he was doing and took the small sample of tissue from exactly the right place on my entire liver's surface. Slim chance, I would think.
Always hold onto the fact that today so much more is known about this disease. Several drug companies are working diligently on second and third line treatments. This is a huge breakthrough for those who are non responders to Urso. Is it scary to have a disease where there is no cure? It is for sure! Do we worry that one day the Urso will stop working? Yes, we do. But..... take each day as it comes. Live your life! Don't let this disease control how you live your life in any way. There will be days that the fatigue will overwhelm you. You embrace it.. and move on. Don't get bogged down with all the 'what ifs'. They can so easily take away a day that could have been greatly lived by you. You have that choice.
Live life! Take each day and know you have a purpose. You matter to a lot of folks who care about you.
Helping a study on ursodeoxycholic
Anyone else? 
LFT's have returned to normal...do I still have PBC?
Very negative Newspaper article abou PBC and AIH
Stopping Urso on trial
