Tuesday's Tips

[DonnaBoll]

So often I hear that " I'm a different person since my diagnosis". What would you say to someone who feels this way? Did you? Is it a bad thing necessarily?

[4pjx__]

I do take much better care of myself. Although, I wouldn’t say that I didn’t take care of myself before diagnosis. I think I was happier before I found out I was sick. Now I worry about it quite a lot. It’s one of those kind of diseases that a person might be reluctant to tell anyone about on account of they still think you’re an alcoholic. No matter what you tell them. Yes, I guess you could say I am not the same person I used to be. I don’t feel like her anymore. It’s not all that bad, I lost 20 pounds, I workout nearly every day. Gave up the wine, and I know it’s better for my health. But after all that, and being diagnosed with cirrhosis (compensated) 7 years ago I have no idea if I am getting worse or staying the same. I don’t really know if all the new taking care of myself is even working!

Pam

[DonnaBoll Administrator in reply to 4pjx__]

Just like I said to Deemum, you are surely practicing great self care. I'm sorry you still worry so much. This is something many of us struggle with... especially if were a 'worrier' even before diagnosis. All I can say is that you really give some thought to the fact that worry does not change one thing. We have to know what we can control and what we can't. I know it can be hard sometimes when our PBC isn't going as we would want. Being diagnosed with compensated cirrhosis must have devastating. But... it was 7 years ago. You must be doing all the right things to take care of yourself. I know many people who are in Stage 4, having cirrhosis and stay way for years. How are your numbers ? must be pretty consistent -

[4pjx__ in reply to DonnaBoll]

Well, my bilirubin usually runs a little over the top 1.2 to 1.4 my ALP was 275 last time. None of the third line drugs seem to be recommended for people with cirrhosis so my doctor has been reluctant to prescribe them for me.

Pam

[DonnaBoll Administrator in reply to 4pjx__]

It is my understanding that someone can take Ocaliva as long as their cirrhosis is compensated. Have you taken it at all? Your bilrubin level is pretty good. I always worried about my bilirubin when reached cirrhotic stages... dreaded the jaundice. That was the worst thing for me because everyone could see it. I could hide the itch and even the fatigue, but surely not the jaundice. Again, I hope you continue to stay stable. I can remember all too well, my alk phos being in the 400-500 range. Has this been the range of your alk phos for awhile now then, I imagine.

[4pjx__ in reply to DonnaBoll]

I have not tried Ocaliva. Although it was considered. My doctor thinks the risk might not be worth it

[gwillistexas in reply to DonnaBoll]

you are right. I’ve always been a worrier. I’ve noticed since I had my 70th birthday in July, I lean more towards the old Doris Day “Que Sara, Sara”. Whatever will be will be. Live and embrace each day to its fullest ❤️

[DonnaBoll Administrator in reply to gwillistexas]

Live life every single day... see what's right in front of you and be happy! Being 'older', I think, does give us a different perspective on life and what is really important.

[gwillistexas in reply to DonnaBoll]

Yes it does. I don’t feel my age by any means. I’ve always tried to keep my young at heart attitude. I refuse to give in to that number “70”. I think when people get into our age group, is when we reflect back on our lives and that makes us appreciate each moment. 😊

[Deemum]

hi Donna hope you’re well and having a good week so far.

Yes - most definitely I’m a different person since diagnosis. I’m mindful about everything I do now ! But on the other hand, I do appreciate things more .. I appreciate the days I’m not so tired etc.

[DonnaBoll Administrator in reply to Deemum]

I hope for all of us we can at the very least appreciate so many of the smaller things that come into our lives every single day... that maybe we didn't see before. I'm sure many of us can agree how thankful we are for those days when that fatigue doesn't consume us. Maybe if there is positive from having PBC, it might be taking better care of ourselves and 'seeing the beauty'. I hope you continue to do well.

I am ok.. It's a good week. Not much on my calendar which I welcome. Having fall like weather here right now in August! Loving it!

[TanGram]

I am the same me as before, but with a constant reminder ...I'm sick. I'll be really tired one day, but the next day is great. Ill get liver discomfort one day, but not the next, I'll sleep horrible one night but not the next. So everyday it's something. Not all of it every day, but some of it each day. I'm going on 5 years since diagnosed. When I start to get worried, because numbers came back higher, or I have an upcoming test of some kind, I come here to our chat room, check in, read other's questions and concerns and it really seems to help. I don't know anyone else with this disease, so I'm grateful to be able to come here and be me =) thanks for always being here.

Laurie 😁