Monday message

[DonnaBoll]

Hello everyone!

Well, it’s been nearly a month since I’ve begun to facilitate this group. The very first thing I want to say is how I am overwhelmed by the outpouring of encouragement and support to each and every post here. So many new members, who are feeling alone and scared, are really helped by your words of kindness. As I stated in my introductory profile, I facilitated another PBC support group for several years. Over the course of that time I was always looking for ways to keep members informed, engaged, and aware of what others have to share of their own experiences.

Starting this week, I will begin to post, on particular days of the week, a question. I’m trying to decide when to post it, as we are in different time zones. Suggestions? Living where I do in the states, I am 6 hours behind the UK. I’ll give it some thought…. Maybe even before my bedtime around 10pm might work.

This is your group. I want it to always be a source of support as well as information. If anyone finds an article about a subject pertinent to the group, please feel free to post it here. We all need to learn all we can about this rare disease.

In the coming weeks, I will start to incorporate ways to share what we are doing to just live our best life. So many here have already come to the realization that we owe it to ourselves to live life to the fullest even with PBC. We are not this disease. It does not define us. We all want answers to so many questions that often have none. It is frustrating I know all too well. ‘See The Beauty’ will be words I’m striving to have each of you bring into your lives.. I hope many of you will begin to share with us how you are living life and seeing what is all around you.

Let me know of any suggestions you may have to incorporate into the group. I am trying to figure out ( I am technology challenged) how to have files readily available to the group on subjects such as itching ‘do’s and don’ts’, questions to ask your doctor, and general advice to newly diagnosed members. If there are other subjects you feel you may want, please let me know.

So ‘Happy Monday, everyone!’ Make this a good week….. Try to do one thing that just makes you happy. I look forward to many chats with you.

Your friend,

Donna

[DCMurphy]

Thanks for your facilitation, Donna! I was diagnosed nearly ten years ago and remember what a lifeline it was to find others who had already begun this journey. I appreciate the various responses that have been received to your previous questions and look forward to gleaning more invaluable perspectives in the future. 😊

[DonnaBoll Administrator in reply to DCMurphy]

Thank you so much for your comments. When I was first diagnosed some 38 years ago I never once received even 1 piece of literature or information about the existence of any support groups. I knew this had to change for others. I felt strongly that there needed to be a support group for those who had the same liver disease -one they could come to and see they were not alone. This is my intent here with Health Unlocked. I want all the members to know they are not alone. This is a place for others to vent, gain information, and know others face the same challenges they do. I hope to continue to provide support and education to the group. Thank you again for your kind words.

[Blue-Mom]

I was diagnosed about 6 years ago and it took over a year for a diagnosis. I struggle still with fatigue, some itching (almost always my ankles and hands randomly), and nausea. I work really hard on controlling my diet as that helps me so much and I exercise because that helps my joint pain. Although I don't love lifting weights and exercise that has been the most helpful thing I have done to help me feel better. I am soooooo much better off than I was 6 years ago.

From the beginning I wished so much to just talk to someone that had PBC and could somehow help me navigate the many questions that I had. I have been so appreciative of all that I have learned and gained from online support. I have a very supportive family and husband and for that I recognize I am very lucky, but there is a lot they can't fully understand. I really appreciate reading other's thoughts and experiences. This disease is strange in how it affects each of us. I am grateful for people being willing to share. I mostly just read and hardly ever respond to anything so thank you to those of you who do respond.

Thank you Donna for your work. Here is to not letting PBC define us!! Happy Tuesday.

[DonnaBoll Administrator in reply to Blue-Mom]

Happy Tuesday to you!!! Support groups, I'm convinced, can make all the difference. No one should ever feel alone in this disease. It is so challenging and can be so complicated that knowing others have shared experiences helps tremendously. Good for you for lifting weights... I think about it but just can't get myself to begin. You might be my inspiration. I know my knees sure appreciate my doing my water aerobics twice a week. Someone is always here to listen and give that much needed kind word. We are not PBC!!!!