Hi all,
Haven't posted in a long time. Dx with Pbc 8 months ago and been on urso 7 months. Bloods have gone back to normal.
My mind, soul and body have not since learning about this disease.
I worry consistently. Driving myself insane. I have the support of my husband and daughters. However my Mother, sisters and nieces seem to think it's slow to progress there fore nothing wrong with me!
I suffer with pain in the liver area and back pain. Stiffness and ache in the bones at times. Also fatigue. This is the worst of them all. I'm lucky at the moment I can stay home. My husband is USAF/DOD and I'm British and been very lucky to be stationed back here in UK for another 2 years. I'm loving it but know will have to move back.
I haven't seen any hepatologist yet. The military are maintaining it with urso and blood work and scan very six months. I think it's time I should see one? Wonder if it's worth me signing back up for the NHS?
I'm scared, worrying and honestly don't know what direction to turn in. I'm now changing my diet habits. Low fat high fiber.
I'm not looking for sympathy from mother etc but acknowledge it. It is real.
Any advise my sisters would help greatly.
Hugs and love. X
Have you joined the PBC Foundation, link at the top of the page, where you will get accurate information?
You are having good care and being well monitored. Worry is one of the worse thing for PBC, everyone will tell you that although it is difficult not to when you feel you don`t know what is happening. The foundation have some good leaflets you can give to your family so they understand PBC . But in the end it comes down to you taking care of yourself and managing your tiredness by taking a few short cuts and some sneaky rests etc.
Read some of the past Blogs. There are a lot of older people with PBC leading (with a few adjustments) perfectly normal lives. I am 74, have PBC and expect to have many, many more years ahead of me.
Thank you so much for your response.
I think getting my head around it and stop worrying is the answer.
I am telling myself what can the worrying change? Nowt eh!!! Just more pain and grief.
Yes. On of the first things I did was join the foundation. Was sent a package and receive bear fact sheet monthly.
How long have you been diagnosed? You are living life huh. I need to get off my pity pot and live.
I'm eating better and do rest when I can. I need to lose the weight. Hardest part.
THanks for caring.
Anne. X
Good girl! Think in a positive light - Look a women coming down the street and think to yourself." I wonder if she has something she doesn`t know about and won`t find out until it is too late. I know I have PBC and am being monitored and getting treatment now to give me the chance of a good life. I am the lucky one"
I was diagnosed in 2000 when checking a heart murmur. Like you I was devastated to be told I had a terminal illness. What rubbish! Many, many people with PBC will die with it not from it.
Good luck trying to lose some weight. My daughter is doing it now by cutting out those little extras and walking someone`s dog. It is hard but if you try you will start to feel you are getting your life back on track and get out and enjoy it.