Get-a-way 2012 part 2

A short visit to L.A. 

My Gabriel is coocoo for Strawberries. Imagine his reaction when we pulled into this strawberry farm. He was in heaven. The kids picked and picked, and of course, dad picked the most. Paul is always the hardest worker in our family. I'm so thankful for him!

Summer get-a-way 2012

Packing for our trip... whenever there's work to be done, Bailee's not far behind. I'm glad for her help.

These are out of order, sorry. Working off of Pauls mac, I'm not sure what I'm doing. Seaworld....

Kono's is our family tradition that started on our honeymoon. It's frequented by locals and tourists. The line is always long, but the food is worth it!

Bailee's Gnome, beach bum with sun bleached hair. He went with us everywhere. 

Lola was our neighbor at Campland. She and the kids had a good time. We were sad to see her leave. But she was thoughtful and left us her email address. 

I pretend

I'm decent at acting, I've realized. I pretend a lot, not wanting to complain. It's old, the aches and pains and worries.

It seems that my doctors are in a good position. I've searched high and low, visited lots of them and finally hand-picked the ones that will work well with me, and more importantly each other. The Utah guy, Dr. K. is the specialist, so I'm letting him make all the big decisions. It works, for now.

The thing is, we are on a "watch and wait" plan. That means, we let this evil disease have it's way with me while we do ... nothing. Well, while we "watch" it. Every day something hurts, today my ankles feel shattered. The good news is, they're not shattered. Even more good news, is the pain will ease up in a day or two. That's what roaming joint and muscle pain does. It's random, and ruthless, and it's real. I wish it was only random pain that was the problem. My kidneys are bleeding. Steadily, increasingly, they bleed. My chest still hurts. My sinus's feel like someone took a nail gun to my head. My lymph nodes are chronically swollen, and that causes even more throat and ear pain. Funny thing with the head, it's all connected by the same nerves, so if one part hurts, it all sort of hurts. Sort of. That's part of the reason, we watch and wait. It's hard to see where the pain is really coming from. My labs are still abnormal. C-ANCA and PR3 elevated. Still. That's almost two years now. I was offered a kidney biopsy, but Dr. K. is confident if we wait on that, I'll be okay. The risks of a kidney biopsy worries me, so if the function is good (for now) I'm OK to wait.

I'm a fighter, so I want nothing more to spring into action, right now. There is just no action in place yet. I pray that soon, Vasculitis specialists, will have a plan in place for patients like me. Patients that have been figured out so early in the game. For now; I let it kill me, one cell at a time. I'm not trying to be dramatic. It's the truth. Good thing I have a lot of cells! I just need to make sure that I don't let a little bit of my Spirit die with each cell that dies. That, itself, is a pretty big task.

It's difficult to not get discouraged. So, I pretend a lot. I smile, and I stand. Two huge things I took for granted two years ago.