Thursday's Thoughts

[DonnaBoll]

Hard to believe that today is already February 20. As I get older (soon to be 75!) the years really seem to fly by. I look around and another month is almost over. I have no doubt that many of you feel the same way.

Personally, I have been 'dealing' with this rare disease of PBC since I was diagnosed at the age of 35...some 40 years ago. I hardly remember much time not having it be a huge part of my life.

It does become a part of our lives, doesn't it? Somehow 'it' becomes a part of us . Yet.. we have to be careful not to let it be WHO we are. We are all so much more.

I know from time to time all of us have days where we question if we are not a different person because of PBC. I just want you to take time and literally write down all you have managed to accomplish... large and small - since diagnosis. Yes, our lives might be very different now.... but do you believe that have lived your lives despite it all?

I hope some of you can share what you have done since your diagnosis. Each small thing makes us who we are.

[butterflyEi]

I was diagnosed by chance in 2006/7 having complained to the doctor for at least 10 years previously of not being well. At that time my complaints were put down to alcoholism, depression and another gem was empty nest syndrome! When I look back at days when fatigue would set I probably had symptoms earlier that I dismissed as long days working etc. I always found a work around for how I felt or just ignored symptoms because the doctor did I was able to successfully be self employed. The people I visited were mostly of the older generation who made me welcome in their homes and that felt good. Their stalwart attitude towards their ailments certainly helped me get my PBC into perspective and enabled me to carry on. Although a long time getting diagnosis I believe I have been one of the luckier ones who responded well to medication and with a good diet promoting good gut health has enabled me to stay relatively well. Albeit that the so called itch of PBC nearly wiped me out, however I eventually saw a specialist who tweaked different medication until I had the itch under control let me get on with life again.

[DonnaBoll Administrator in reply to butterflyEi]

So glad to read your comment - and sharing your story regarding getting diagnosed. This is such a common problem when women present with overwhelming fatigue. Docs just brush it off (as with you) as having kids, a job, social commitments, and maybe being overweight. Being overweight is surely a 'catch all' for a lot of things, I think.

One of the big pushes in the last few years has been for docs to do a routine liver panel as part of our 'well woman' check up. Wouldn't that be amazing?! At least it would be a baseline - and very well 'catch' many elevations in the numbers I have no doubt.

I, too, have met many men and women who have helped me keep my ailments (including PBC) in perspective. I think this goes along with not being defined by this disease. We do learn to live a full life despite it. I hope everyone can, in time, learn to do this.

Thank you again for your perspective.