I've been with you now for 6 months. This is your group... please let me know if there is any other way you would think you could benefit from belonging to the group - anything else you would like to see from the group?
What else can I bring to the group for you?
Do you like the idea of the daily post from me? Monday Me, Tuesday's Tips, etc.......
What else would you like to see being posted in the group?
I am open to any critique or suggestions. I want this group to be beneficial to all of you... a place of sharing, support, and education.
Written by
DonnaBoll
Administrator
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Goodness 6 months already, I think you can gauge how your doing by the reply’s you have, if people respond then your doing good.
I read posts everyday, but I don’t really reply to the more social ones but that’s me personally I’am not a big social media fan l don’t gain anything from them, but I don’t join the face to face groups either that’s just who I am so no reflection on what you do. But I do read them and you’re touching so many people who would otherwise be a bit lost and some people love social media so you’re connecting. Keep up the good work.
The ones I like are the more related to PBC posts , think that helps a wider audience on Health unlocked, the facts from David Jones book or and the meaning of the words we hear in PBC, or anything that will help someone newly diagnosed.
I think that’s the most awful time for us with PBC that feeling of being the only one, and what does it all mean. I don’t think I’ll ever forget how being diagnosed and left to my own devices felt and that was 15 years ago this week. I still tick along quite nicely, the road has had a few bumps, but thats life. Keep up the work it’s appreciated wider than you think you’re touching people across the world.
Thank you for your honesty - and kind - reply. I just want it to be a place of support and understanding where no one ever feels alone. You are so right about PBC being a disease that so often makes us feel alone and isolated. So many just don't understand what it all causes us to experience physically. We do take one day at a time for sure. Living life the very best way we can !
Donna, I so appreciate your posts! Thank you for taking the time to do so on a daily basis. I don’t always reply, but I often read them, whether they are more PBC-informative or social. I tend to gravitate to the former because I am a science nerd and want to understand all I can about our condition, as well as offer the same support and encouragement that I was when I first joined this group shortly after my diagnosis—terrified and looking for any solace. I’m also a bit shy with the social stuff (and really busy with work at the moment) but will respond from time to time. It reminds us of our humanity, to live our lives, to connect, and even to be a bit silly sometimes. Laughter is therapy! So keep it up! You and your posts are wonderful!
🥰 thank for your kind words... as long as I know people are reading what I post then I have achieved what I intended to. I'm always open to any suggestions.
I appreciate everything you post. I've logged on almost everyday since you took over where it might of just been once every few weeks. Im also not much of a social responder but absorb everything that is always posted.
Truly appreciate time you spent helping all of us deal with this disease.
You have no idea how much reading this means to me. I just want this group to be a safe place for members to come for support as well as education.. and maybe a smile.
Discussion on health issues and seeking advice brought me to Health Unlocked after a recommendation from a friend. As I have said before I am not one for this touchy feely world however I believe your care for mental well being in PBC has touched many who visit this page. I have Prof Jones's book but your highlighting special information has been most useful. Hard to believe it is 6 months already, keep up the good work Donna.
I so appreciate what you said. I just want this to be some place you can come to and get what's helpful and educational as well. I truly believe our mental health and how we deal emotionally that all this disease throws at us is so important. Stress can surely increase our itch as well as the fatigue. Finding ways to manage stress is so important. Self care is also something that I want to continue to encourage everyone to do. We have to get past the idea that it's selfish. It couldn't be farther from the truth. We matter. We have to believe that. We deserve to be kind to ourselves and do what feeds our spirit as well.
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fatigue
Travel insurance (I'm in UK) 
ocaliva
To take or not to take Urso!!!!
