Tuesday's Tip

[DonnaBoll]

What's the best advice you received when first diagnosed that you would pass along to our newer members?

[KimRenee]

Good question.

1. Best advise, give yourself grace on those times you’re not able to do the same things you used to be able to do.

2. Educate yourself and your family and friends about PBC. This will help you to build a support group of folks who understand and are there for you when you’re feeling overwhelmed or alone.

[DonnaBoll Administrator in reply to KimRenee]

It's always nice to look back and remember that one piece of advice that made a difference for you. Being kind to yourself is a huge thing we all need to remind ourselves of for sure. Even though our lives may be changed, we can still live life to the fullest in our own way.

The more we learn, I really believe, the less scary PBC can be. Getting current and authoritative information is the key. Sharing this info with our family can help them perhaps be less scared too. One thing I know is really important in each of our lives is to know what we can and cannot control. Thanks for your comment!

[lovesoccer]

1. Lifestyle changes. I got serious and made some positive lifestyle changes. I cut down on sugar and processed foods, exercised more, and lost 60 pounds. I wasn’t a big drinker, but I basically gave up alcohol. (I have my sip of my husband’s wine—not a half glass, not a quarter glass, but a sip.) In these ways I feel my PBC has actually been a blessing.

2. I stay educated on PBC and share this with my family and friends.

3. I remain grateful for the blessings in my life.

[DonnaBoll Administrator in reply to lovesoccer]

Love all you wrote here. Sometimes it does take a 'wake up' call like a chronic illness for us to make changes long overdue. I'm so glad you feel that PBC can be a blessing as well. No one wants it but when it can give us that nudge to live better mentally as well as physically, then it has been a good thing in some ways. Gratitude is so important in everyone's life. That is a great way to end our day.... writing down one thing we were grateful for that day.

Continuing to learn for ourselves as well as our family is so important. Getting that information from current and respected sources can make it all a bit less scary for all of us. Do you have Dr. Jones' book? I wish every single person who has PBC had a copy. It can be a game changer for so many. Thank you for your comments,

[Gaspereaux in reply to DonnaBoll]

Doctor Jone’s last video conference on the PBC foundation (last week?) is amazing! As well as answering questions, he, at the end, talks about a possible new approach to tackling and handling PBC, as well as the two new available therapies. Don’t miss it, everyone!

[DonnaBoll Administrator in reply to Gaspereaux]

You do know they tape all of those Thursday sessions? Anyone can watch them on their Facebook page. I have to keep hope that new approached to treatments will come along as well as drugs. It is well worth anyone's time to watch those whenever they can. Thanks for sharing!

[chrisj]

I don't recall being given advice. I was just relieved to get the right diagnosis after gps getting it wrong and finally being prescribed the correct medication.

I googled SLE to find out what it was. The hospital doctor assured me it wasn't a life threatening illness as I'd never heard of it...I went home and started finding information for myself on the net.

I would urge people not to push themselves beyond their means and to get as much info as you can, there's lots of it on the internet. Doctors being reluctant to give much away has been my experience with focus on their keyboards to keep things up to date and of course time limitations per consultation for those of us that cannot afford private care.

Be kind to yourself x

[Sister65]

Not to Google, so much of what remains on line is outdated or just wrong. Rely instead on D. David Jones' book on PBC and join the foundation to get newsletters and other info. The best advice I got was from the doctor who gave me my diagnosis - not to treat with him but to get to a Dr. with a lot of experience with PBC, not just liver disease but PBC in particular, because they will be up to date on what is going on in the research. Having correct information is empowering and takes away a lot of the anxiety that comes from being diagnosed with a chronic condition

[Gaspereaux]

That’s a great question, Donna! And a difficult one, as i have received so much good advice from you and so many others! I guess one would be…1. Remember you are not alone. 2. Don’t beat yourself up over this, LIVE. 3. Raise awareness….. and finally….4. DO NOT TRUST GOOGLE! Have a great day!

[DonnaBoll Administrator in reply to Gaspereaux]

Love all you wrote! Feeling you are alone in this maze of symptoms and words you don't understand is so overwhelming in the beginning - any time really, I guess. Support groups can lessen that fear for sure. Being validated that how you feel does not make you the only one who does. Knowing others can really 'get it' can be comforting, I think.

Living your life to the fullest is a responsibility we all have to ourselves - and to those we love and those who love us. Life your best life! Don't use PBC as an excuse not to.. don't give it that much power over our lives.

Google is not our friend in most cases. Going to current expert resources is so important. All the damage that's done, unfortunately in the beginning for most, can be devastating. It is not a death sentence by any means and that is what most people read in the very start to their learning about PBC. Thanks for sharing such great advice for all of us to follow!

[Hippy22]

Don’t panic! Take one day at a time and educate yourself. 😊

[DonnaBoll Administrator in reply to Hippy22]

Short and sweet but oh so true! The more we can educate ourselves from respected sources the less scary it can be. We owe it to ourselves to learn all we can do we know that we are receiving the best care that we all deserve. There is nothing wrong with respectfully questioning our doctors when we think we need to. We know our own bodies.... we are the experts in so many ways on how we feel and when something isn't right.

Taking one day at a time is such great advice. All the 'what ifs' won't change one thing by worrying about them. We need to convince ourselves of that, I know. Thanks for such simple but vital advice for all of us!

[Zippydoodah]

It could be s lot worse

[DonnaBoll Administrator in reply to Zippydoodah]

it can always be worse. When we aren't feeling well or have a chronic disease that is causing us problems I hope you don't minimize it. We all have those days, don't we? Right now I'm dealing with a strained lower back... ugh! Just maybe feeling a 'bit' sorry for myself today.

[Wocket]

my consultant told me not to Google which was good advice but did I listen no 😂.

[DonnaBoll Administrator in reply to Wocket]

Believe me, you are not the only one who might have ignored that advice. The important thing is that now we know of many more reliable sources to go to. We learn with time, don't we? If only the health care professionals would give their newly diagnosed patients better advice about where to go for information. I have to wonder if they even know about these resources. 🥴