Sunday, March 3, 2013

It's been a year

So, yesterday made 1 year since I was diagnosed with PBC.  So far so good.  I do have that 'liver pain' sometimes, but all in all I'm doing OK.
I am tired somewhat - especially on days I don't have my green drink.
My hair is still falling out so fast I have no idea how I have any left on my head.  It's crazy thin now.  I am pretty sure it's the meds, though my liver doctor said he's never heard of that being a side effect, but on the PBC support boards EVERYONE says that Urso has their hair falling out pretty badly.  My most recent trick has been to curl it.  It makes it look so much more full that way.  It's been a fun thing to do with Zoe too.  She likes to have curled hair like mommy, so we wear curlers together at bed time. And man, her hair looks super awesome curled.  Love it!

I am doing everything I have found (either through my own research or from the multiple doctors I've talked to about this) to help my liver heal and my immune system stop attacking it:

I take a huge green drink every morning that contains tons of veggies and fruit - Always a combination of lemon/lime, kale/spinach, cucumber, carrots, banana, celery, frozen berries, tomatoes, milk thistle, aloe vera juice - Things that are supposed to help in liver repair / support.  I also eat an apple a few times a week - the pectin is supposed to also support liver function.

I take all the fat soluble vitamins - ADEK - plus calcium and extra C.  My liver doctor said with liver disease it's tough to absorb enough vitamins.  And Osteoporosis is a common side effect of liver disease.  So I take everything he told me plus the extra C since that helps with immune function as well.

I am 100% strict on grain free - this is to hopefully help my immune system so that the attack might stop.

Of course no alcohol. Super minimal coffee and soda (Like 1 coffee a week and maybe 1 soda every couple/few weeks). But I added in lots of green tea, as that's supposed to be good for the body.

I've been working out 5 or 6 days a weeks.  Besides overall health, exercising is another way to get toxins moving - this may be helpful for my liver in multiple ways. Plus it does help increase energy levels.

And tons and tons of water to help flush things out as well.

I REFUSE for liver disease to be the death of me.  I will live to be old and play with my grandkids.  I was diagnosed at 34 - average time to death from diagnosis is 16 years - This. Will. Not. Be. My. Story. I will live well past 50.  I will see Zoe grow to an adult and I will be there for her through it all - AND I will be in good health - NOT bedridden or on disability.

A positive attitude is, IMO, just as big a part of all this as any of the other steps I'm taking.  And I have a very good outlook on this and on life in general.  Life is what you make of it!  I was talking to a friend about how someone had a good attitude about a bad situation and he said "You have the best attitude about things of anyone I've ever met! Life hands you lemons and you say screw the lemonade, I'm making lemon cake!" I said "Grain free of course!" :)

I hope you are able to make lemon cake out of your basket of lemons.  If not, at least try finding one thing about your situation that's good.  If you focus on the good, the bad will just become a small part of your life and eventually you will start to notice it less and less.

In order to carry a positive action, we must develop here a positive vision.
----Dalai lama


  1. Hi! I have nominated you for a "Beautiful Mama" blog award! I am glad I found your site. I enjoy it, and I wish you the best. A family member of mine has PBS. If you don't want to pass on a Beautiful Mama award, it sure won't hurt my feelings any. It requires a little bit of extra work you may not have time to do. But, regardless, your blog sure sounds like you're a beautiful, kick-butt, conquering mama. So today I nominate you for "A Beautiful Mama" award!

  2. So proud of you!

  3. Thank you for starting this blog. My docs won't formally diagnose me as pbc but I have the marker. They are "watching" me but at my last appointment she all but confirmed it. I started all of this at 32 and now I am 34. I refuse to give up and I have just started this journey of changing our lifestyle so that I can live to see my grandkids as well. You are such an inspiration and I am so glad I ran across this blog.

  4. You are very inspiring and I find this fascinating as I've been told we cannot do anything for our PBC except urso. I recently read about leaky gut and am wondering how you tolerate the L-glutamine? I read that people with liver disease cannot take it, but I know we need it. Please advise. Thanks!