Wednesday, April 4, 2012

Some Pet Peeves

So I've been reading various PBC support group sites and there are a few things that bug me.  But before that, I do want to preface this with the fact that overall I think these groups are awesome! And I am so thankful for having this disease in this day in age.  I feel like people that had this before the internet/infomation age were probably very misinformed and just felt totally lost...

OK, my pet peeves.  First, it's sort of a mixed one- MOST of the people on these boards are over 50 women.  There are some exceptions, but by and large, that's what's there.  I feel kind of out of place.  Like why the heck do I have this thing?!?!?! I'm too young! But it's mixed, because the few ladies I've talked to, make me feel better - like a mom or grandma looking out for you, so that's nice.

My other pet peeve is a little slogan most sites tend to have.  Something like "PBC doesn't have to be a death sentence".  So, ok.  Yes it MAY not kill you, but just because it doesn't directly kill you doesn't mean your quality of life is worth a darn.  In one breath they say it may not kill you and in the next they talk about all the aches, pains and disabilities caused by PBC.  So many people end up going on disability due to the extreme fatigue, joint pain, liver pain, etc...NOT SOMETHING I'M LOOKING FORWARD TO...And MOST of them all end up developing multiple autoimmune diseases.  Like PBC is the gateway autoimmune disease! :(

And then a post I read keeps playing over and over in my head - "My mom just died of PBC and now I've been diagnosed with it..." UGH! I don't want this to be my and Zoe's story!!!!!!

But I'm doing everything I can to prevent for Zoe and to heal me!  I WILL!!! ;) I will keep telling myself: I will beat this! I will have a long and happy life with my kid! I will help her to stay healthy through lifestyle and nutrition choices!  I WILL!!

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