scary continued

[DoxieShamrock]

I’m not being disrespectful. I just don’t get it. Have I had it so long I just accept it as normal?

I really hate knowing I have this. I hate having to decide when or if I tell a partner. My kids don’t even know. I don’t want to be treated differently.

Maybe I’m lucky now & wil pay later. I just can’t let this stupid unfair disease dictate my life. I get blood work done regularly so I’m not in denial. I don’t understand why I’m not as concerned as you.

[gwillistexas]

it’s hard to swallow. I took it as a death sentence and worried myself sick over it. In time, you learn to cope and accept. It’s very important you have a hepatologist with whom you put full trust in. Let him be your guide.

[Jagy]

Idk. When i first found out i was so freaked out. I was just released from constant care for breast cancer and thought i could just not worry about anything now. But boom. Started feeling like crap two months later. Did a life style change. Lost weight. Then numbers got worse. Saw the liver doc and got this diagnosis Feel good. Blood work after 3 months actually showed improvement. I guess i am responding to the urso. But i have to get the elf test done still and i am sitting in labcorp waiting to get blood drawn. My kids know. But i told them i am on meds. I am divorced and not dating anyone so i have no one significant other to tell. I eat healthy. Drink occasionally. Get more sleep then usual and exercise. All good things. We can live long and happy or get killed in a car accident tomorrow 😂 so be happy. Be as concerned as you want.or not. Just be mindful so you can be the healthiest version of you. Make sense?

[Muffymac2020 in reply to Jagy]

I know exactly what you are talking about. In 2013, just retired from teaching, (already with PBC since 1999), I was getting discharged from the hospital after a second hip replacement. The ortho doc asked me if I already had high white blood cell counts, and I told him no. A week later, I found out I have CLL (chronic lymphocetic leukemia) on top of Stage 4 PBC. My med list is so long, it's laughable! 🙄

[JBH2000]

Hi Dixie - what other choice do we have? I’m thankful there are meds which keep liver enzymes from progressing. I can think of far worse things to have. I don’t like taking the Urso, but have learned to live w it. I say this with kindness and concern- it is a very “livable” disease to have. Try not to get too overwhelmed- my kids are fully aware ( although they are not fully aware that I do get exhausted at times, and sometimes I have some leg pains) that’s the worst of it - which is not horrible!!! Eat well, cut back on alcohol and live a full, happy life!!!

You are not alone!!!!

[OrangeTulip]

Doxie your feelings are valid and you are not alone….we are all in the same boat, some better then others. Life gives you challenges and we have no choice but to overcome them…like JBH says “what choice do we have.” We are lucky we have the meds and this disease forces us to look after ourselves better. We all have good days and bad, one day they will find a medical solution, we just have to keep our faith.