Lost friends and family.
Just wondering how many of you have you have lost friends and some family due to this disease. Iv lost a very close friend because I couldn’t keep up with her. Even my sister I feel has distanced herself from me. Has anyone else experienced this.
Hi there,,
Not quite that issue. My family and friends treat me like they "don't even believe" I have PBC. Lol...go figure. But, my husband is great about it. My friends have said.."You look normal." It's only when I hit the wall and I'm too pooped out to do stuff that they realize somethings up. Since March though, because of covid-19 the only person I've been around in person is my husband. I see friends on Zoom regularly though so we do keep in touch. I'm sorry that's happening to you though, that can't feel good❤. Sometimes people get uncomfortable around illness. I've heard things like that happening to ones that have cancer. People pull away for whatever reason. I think it's just they don't know what to say or do around ones that are sick.
How have you been feeling otherwise? You started fibrates right? I heard or read somewhere that seladelpar was gonna start a new trial. Did you hear that. My Hepatologist said promising things are happening with fibrates.
(It's SUPER windy at my place here in Kansas right now. I mean it's so windy my house is creaking. Yikes!!)
Stella❤
Hi Stella,
I’m doing ok on the fibrates bloods are normal, got a lot of bone pain though. Iv got used to not having these people around now. Got my husband and daughter and grandchildren so really that’s all I need. Not heard anything about the seladelpar trial. Got appointment in March to see Hep so may know something then. How’s things with you besides the creaky house 🏡😜
Kimphoebe
It is very easy to feel isolated staying away from people to avoid covid. You call to talk to someone and they haven’t been anywhere or done anything. You discuss your different methods of sanitizing things or talk about when the vaccine might be available and if you are going to take it and whether it will work or how long.
I don’t talk as often with my sister either. I call her but there is really nothing new to talk about. It’s depressing to watch the news and depressing to talk to people because it always comes back to covid.
My other sister died of covid in July she suffered a horrible death from it so we try to avoid talking about what she went through.
The best thing you can do is find something you enjoy doing—take a walk, do some crafts, check on some elderly through a phone call, adopt a pet, paint your bedroom, clean out your closet. Keep trying to reach out to people online. One day hopefully covid will not be such a major part of our lives.
Linda
HiYes, I have lost friends as I changed a lot. I do feel as if I’m no longer fun Angela and also I don’t have the energy at times to meet up. I have kept the most important ones though and love them all even more for supporting me and understanding as much as they can . My husband and daughter have always been there, even when I have bad flares and want to shut myself away from the world . Xx
Sadly yes, the silly thoughtless comments people can make but I have one good friend of over 30 years who has her own trials which we share, then have a good laugh. I know I am lucky to have her, my sisters however are a completely different story! Let us all hope for a better New Year
Sadly, I do think so. I’ve tried mentioning my disease - I’ve got overlap with AIH - saying a bit about how it affects me. I don’t think many people get it though. Thankfully my parents were dead when I had to stop working for health reasons. They’d have wanted me to ‘just try a bit harder, Ruth’. Shielding from Covid has been interesting - my brother is more kind and solicitous than he was about my chronic conditions earlier. My best friend was dx with cancer earlier this year - we can share the frustration of shielding from Covid (email as we’re both at/near home) though our situations are of course different. Especially as her particular cancer is hard to treat and my problems are now chronic and under control with the meds.
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