Another recap...

Lots of swimming, and Glenn Beck's "Man in the Moon."
AMAZING!!

Due to the fact that my life has been a little out of control this year, my blog has suffered. A LOT. I'm just sayin'.

After many months of worry and self pity, I think I have finally reached a safe place.  Let me break it down. My life isn't going to be what I thought it would be. I am never going to be one of those happy and optimistic sick people who you respect and admire. I will be the same person I have always been - Hilarious, depressing and REAL. 

I have had such an amazing summer with lots of ups and downs. I have had so many horrible days, so many IVs,  invasive tests and days where I just lay in bed from the exhaustion and nausea. Days I can't even remember because I can't really wake up. Blegh. 

Josh's best summer - Scout camp,
BYU football camp & Yellowstone.

But I have had amazing days too. Days with a wonderful family who all jump at the chance to help. A family who will NOT take no for an answer even when I say it a thousand times. A family who will take my kids to FUN places where they can forget about me and my problems. A family who will give me blessing after blessing, and fasting and countless prayers. I have a husband who does EVERYTHING a mother should do, along with EVERYTHING a father should do, without a complaint. EVER. 

THE BEST FRIENDS!!

And friends. Friends who will take me on my good days and my bad days. Friends who get defensive on my behalf, and research for me and send me happy and funny messages. Friends who MAKE me do things I might not normally do, and tolerate me the whole time. I feel so undeserving of all of these gifts... Mostly because I've never been a great friend, sister, wife, daughter, etc.

Anyway, here's the news:

After an awesome trip to the Mayo Clinic, along with countless other appointments and tests, I definitely have PSC.  Even though I knew, it was good to get a confirmation. 

I have probably had this disease a lot longer than anyone knew -this is both good news and bad. It's great that is hasn't been too horrible, but bad since the lifespan before a transplant is between 8-10 years. Not sure how I feel about this yet.

Spring soccer and our trip to Scottsdale to visit the Mayo Clinic.

After a very scary ERCP, I am so relieved to learn that even though my disease is moderate-severe, my tissue samples came back negative for cancer. I haven't really mentioned this before, but THIS was a HUGE concern for me. I am at a super high risk for bile duct cancer - which is pretty much a death sentence. My doctor called me with the news while I was at the roller rink. I skated around like an idiot after I hung up - I'm not sure what I would have done if it would have been positive! Maybe just laid on the dirty floor and cried.

The best news of all is that my kids have stepped up and really been champs. They love cooking dinner and helping me take care of grown up things. Ali decided to give my liver the nickname "Livvy," and they all think it is hilarious. There is nothing better than being able to laugh with my family, even about the most serious things.

My super ripped husband finally got his gym. And the
TransAm is running again!

I am trying so hard to stay positive and be a mom my kids will remember. I'm praying for a cure or some kind of treatment, which as of now does not exist. I want to be long-suffering and gallant and graceful, but I will probably just be my big mouthed and sarcastic self!!  I think everyone secretly likes it.

Old Faithful!!

Bear Lake & Yellowstone in the party van.