Friday, September 26, 2008

Julia and Chris are Here!

This post is like...2 weeks late, but I was waiting for some fun pics, haha.
My sister and brother-in-law have moved to California from Washington! I'm glad to have my sister back in town. Here are a few pics of us last weekend at my aunt's birthday...
Welcome to Cali guys, time to soak up the sun :)

Health/Dr's Visit Update

Just a quick health update, it's been awhile...I went to USC on Wednesday and did a full check-up and met with the CF team, and it looks like I'm doing well! My PFT was definitely higher than it has been the last few weeks (not quite at my baseline, but it's getting there!) and I'm glad to be feeling back to normal- surfing, working, hanging out with friends !
I did find out a few not-so-exciting things (not terrible)
1. I'll be doing sinus surgery in about a month (whenever I get the approval from my insurance). Many CFers have sinus problems as well, basically having CF in the sinuses causing a ton of infection, blockage and polyps. So to alleviate symptoms and clear out infection (thus hopefully preventing the infection from traveling down into the lungs), I'll be having surgery in a month or so, it's a routine thing and it should be good for me. Not sure what the surgery will entail or when, so i'll keep the blog updated when it gets closer.

2. I now have "Osteopenia", early Osteoperosis. Because nutrients don't always abosrb into the body properly in CF, my bones are weaker than the average person. So, i'll be needing to take more calcium and do more weight-bearing exercises, not the end of the world... i'm happy to comply and get stronger :)

Other than that, the report was fabulous! I'm doing great and have recovered well after being in the hospital! Thanks USC for taking great care of me!!


Monday, September 22, 2008

Goodbye Summer, Hello Fall

In the words of Dashboard Confessional, who sing it so well,
"So long sweet summer- I stumbled upon you and gratefully basked in your rays.
So long sweet summer- I fell into you, Now you're gracefully falling away..."

Today is the official first day of Autumn, so I bid summer of 2008 goodbye with a a few favorite memories from an incredible, life changing summer.

Fabulous family time...
Memories with friends (this pic is just one example of the many memories shared and the blessings I received from so many)...
A TON of beach/surf time on both East and West Coasts...
And sharing my story at the innagural Pipeline to a Cure Gala, thus changing me forever...
It was a sweet, sweet summer indeed...

Loving Life...

I've been a little behind in my blogging as I was getting my feet back on the ground last time for a little update before I head to work this morning...

Update: Last week was an awesome week back into things! I was able to surf a couple times, go back to work and feel like I'm living a normal life again. The IV meds are out of my system and I'm glad to be feeling like myself. I'll be going to the dr. on Wednesday for a check-up to see how I'm doing.
As I surfed early Friday morning, and watched the sunrise over the cliffs, I was reminded of God's goodness and faithfulness (I wish I had a picture to show you the gorgeous sunrise! But I forgot my camera). I love surfing, it felt so freeing to be back in the water :)

"Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him."
Lamenations 3:22-24


Monday, September 15, 2008

Volcom Tour

About a month ago (right before I went into the hospital), my friend Monique and I were given a tour of Volcom, the surf clothing company down in Costa Mesa...It was awesome! Volcom is totally stoked to get involved with Cystic Fibrosis by sponsoring events, helping put on surf camps and being involved with the CF/Surfing Connection. They invited us over to tour the place and we got to see everything- it was a blast (and so informative, I had no idea how much work went into clothing design, marketing etc.)...

We met some awesome people (team directors, photographers, art/design guys) who wanted to hear my story and really understand are a few pics of the people we met...Not to mention, we each got some sweet bags of Volcom gear :). Thanks, Volcom, you guys Rock (especially Steve who made the connection)! I can't wait for some awesome events ahead!

Back to Work

Today was my first day back to work, interpreting....I'm exhausted and I only worked 4 hours, haha.
I work at a community college as a sign language interpreter and because I was sick and missed the first 3 weeks of the semester, I had a lot of little errands to run on campus to get myself caught up. For example, when I arrived on campus I completely forgot I need a new parking permit...haha, so I hiked myself to the office and got one. So many little details that I forgot while being away for 3 weeks :).

Anyways, it was a good first day back...I'm exhausted and am going to take a nap now. It feels so freeing to be back and fun to be doing things outside of my house again :). As these IV meds leave my body I'm feeling more and more like me!

Friday, September 12, 2008


That's of 12am tonight I am officially done with my IV meds and on the road to feeling more normal again!! Praise the Lord!!
Update: I went to the dr this week and my pulmonary function numbers were not as high as expected. But, I am finishing the meds today to give my body a break from the meds (and to assure that other organs don't start malfunctioning). I am hoping to re-gain strength and stamina on my own, and I'll be getting back to normal life/work etc. starting Monday!

What's next? It should take a few days to get these meds out of my system, they make me feel pretty crummy due to the side effects, I just don't feel like myself. Please be praying that specifically in the next few weeks, I can get my stamina back and hopefully get my lung function numbers up to normal. Also, pray that these meds will clear out of my system so I can have an appetite agian and feel more like myself. I'll be headed to the dr. for a check-up in 2 weeks.

As of now, I'm going to enjoy a good night's rest and hopefully hit the beach this weekend!! Oh how I've missed it :).

Thanks to all for your support. Knowing that this is a regular part of life with CF, I am so blessed and grateful to have your prayers and love to get me through this. I am incredibly thankful for each of you, tonight.

Praise the Lord for His hand on me through these last few weeks :). God is so good.

Thursday, September 11, 2008

Patriot Day

Praying for our country today, in honor of September 11, 2001.

Tuesday, September 9, 2008

Living A Double Life

Sometimes I wish I were like Superman...You know, able to run around and keep a secret life on the side that doesn't really interfere with my other life...two jobs, two worlds to live in, two identities, two different outfits :). In fact, I do feel like I live a double life...definitely not as cool as Superman, and unfortunately these lives often intertwine and it's hard to separate them. One of the hardest parts about being an adult with CF is realizing that life still goes on without you, when you're sick. I step away from a lot of my active life and CF becomes my first and only priority and yet, I know that the swell still comes in and waves are still being surfed, friends and family have lives to lead as I stand and watch on the side, and before I know it, it's already the middle of September when just three weeks ago I was in the hospital and still in 'summer' mode...Even the seasons still change! (side commentary::boo to it getting dark earlier!)
When sick with an infection, I lead another life- a life of meds and treatments, and the realization that I'm wiped out from just that, that sometimes I don't have the energy to do anything else.

Today gave me a dose of reality in this. As I'm starting to feel better and recover well (yay!), I decided that I would go to work for 2 days this week, and only be there for 2 hours each time...just to get my feet wet again. As I got ready for my day, I knew that I'd have to juggle to get my treatment and meds done before going and also have blood drawn by a nurse in the morning as she visited my house, but I did that and I was ready to go! I finished my meds and treatment and was sitting with the nurse...I thought I could make it! I thought, "I can actually have a little bit of normalcy today by going to work"- I was stoked.

My bubble bursted after a half hour of the nurse sticking multiple veins in my right hand and tears streaming down my face from the excruciating pain that was caused from this terrible maneuver, I realized....I can't work and I guess I'm just not meant to go back today. Usually I can have my blood drawn, no problem! I am back to work the next hour, no harm done, and I don't think I've cried during a blood draw since I was 10 years old, but this time it was a difficult process and it took longer to get the blood needed at the expense of my poor hand. Thus, because I use my hands to work as a sign language interpreter there was no way that I was able to use my hand and work after severely bruising and hurting my hand from the brutal needle sticks. I called my boss, and again, let my sick life take over and took the rest of the week off.

Guess I'm not as much like Superman as I lives intertwine, and I pray tonight for patience to allow my body to continue healing for the rest of this week, as much as I want to go and jump in to life. I need to let my body's needs and the schedule of all I'm doing to care for myself take precedence. I realize tonight that when I'm sick and have meds and treatments to attend to, that I want to do that to the best of my ability, no matter how boring and hard it gets to step away from the things that I love for a bit- I am given such a great 'other life' that I want to enjoy it when I'm well. Trying to put my sick life into the routine and busyness of my active life would be at the expense of my health because obviously surfing, work, social activities are way more fun :). So tonight, instead of being like Superman or a cool double agent, I'm just me, in the reality that I can't do it all...I am taking care of body and being grateful that I have the ability to do so.

Monday, September 8, 2008

Hollywood Bowl

Last weekend, I had the privilege of going to the Hollywood Bowl, an LA classic :). My best friend, Kim, was given tickets to sit down in the front row of box-seats! So, thanks to my mom, she packed us a gourmet dinner and we enjoyed hearing the LA Philharmonic play classic Warner Brothers movie was a fabulous outing to get me out of the house :). It was such a treat to sit down in front to see the orchestra and enjoy a relaxing evening. Thanks, Kim for sharing your awesome tickets!

Sunday, September 7, 2008

Psalm 46:10-11

"Be Still and Know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.
The Lord Almighty is with us,
the God of Jacob is our fortress."

Saturday, September 6, 2008

Update: 2 Weeks

I've now had 2 weeks of IV treatment (in and out of the hospital) and I went for a check-up yesterday....The plan is for them to keep me on IV meds for 1 more week, and I will officially be done next Friday :). I am so excited!'s my health? My pulmonary function test numbers were up just a little (this test measures my lung function- tells the docs how much I am able to breathe in, out etc.). As of yesterday, my PFT was a bit higher bringing my percentage to 62% which is higher than it has been in a few weeks! That means, the meds are working and my body is fighting off this infection...I am getting better!

What's the plan? I'll do my IV's for 1 more week and still take it easy, not go back into normal life full-time just yet. I'll be working 2 days this week, just to get my feet wet, and then hopefully I can continue to gain my strength and feel more and more back to normal. I'll be trying to exercise (that helps bring my lung function up), and also resting a ton to let the meds and treatments continue to do their job without wearing out my body. If all is well, I should be back to normal (mostly) by next weekend! Yay!
Thanks for the continued prayers and's been an interesting few weeks, I may blog about it sometime soon. As for now, I'm going to take a nap, ahh how I love Saturdays :)
Love to all,

Friday, September 5, 2008

Check-Up Today

I'm headed back to USC to to Cystic Fibrosis Clinic for a full check-up. I am hoping that my PFT (pulmonary function test) shows that i've made some progress in my recovery from this infection :). Pray for good communication and good results from all my tests (and maybe even finishing my IV's this week!)

It will be good to see my docs and chat about how I'm doing...I'll post an update when I get back :)

Thursday, September 4, 2008

Way to Go, CFF!

Forbes Magazine will be publishing an article next month about the CF Foundation and all the research that they have done. This article It's a great article to show the incredible work that CFF has done, and is doing to help fund research and ultimately a cure for CF patients around the world.

Check it out here!

Thank you CFF for helping to extend my life and the lives of so many with CF...because of their hard work in funding research, there is so much hope for the future. Thank you to all at CFF for your hard work, I am forever grateful.

Wednesday, September 3, 2008

A Restful Weekend

I LOVE being home :). I think each day I've slept an average 10-12 hours each day including naps and sleeping through the night without interruption and without coughing. It's felt so great to catch up on the needed sleep that I missed while in the hospital!

In addition to my breathing treatments and IV meds, I have enjoyed some home-cooked meals and time to rest and relax (including a few movies and finally finishing Season 7 of Gilmore Girls :)...

I'm still pretty tired and not back to normal, but I feel like with extra sleep and devotion to my health care, I am making tons of progress. I'm starting to breathe a little easier, and i'm getting back into light exercise to keep my stamina up. It's been a great few days at home!