Life to the Fullest

2010-05-07T07:16:00.000-07:00

Life to the Fullest, Fulfilled

On Saturday, May 1, 2010, Emily peacefully went to a place without CF, a place where she can run, surf and breathe without worry. She lived her life exuding love and grace, impacting everyone who ever met her and showing the power of the knowledge of the resurrection of Christ in our lives. We already miss her and are so grateful for the support of everyone who knew Emily and loved her as much as she loved everyone else.

We will hold a memorial to celebrate Emily's life:

Saturday, May 8th, 11:00 AM

First Christian Church Huntington Beach, http://www.fcchb.com/

1207 Main Street, Huntington Beach, CA 92648

Following the service and refreshments, we will invite everyone to go to a nearby beach and put our feet in the water as we remember Emily who loved the ocean. Casual dress okay.

Haager Family

21536 Carriso Road

Diamond Bar, CA 91765

909-396-1095

Love, The Haagers

Where's Emily?

2010-02-27T10:45:00.000-08:00

This is Emily's mom posting for her as she dictates to me:

In case you are wondering where the heck I've been and why I haven't been posting, it's been an interesting month. Needless to say, I've been in the hospital for a month, not really able to communicate but my family has done a fine job communicating with everybody via Care Pages:

https://www.carepages.com/carepages/emilyhaager

Feel free to catch up with what's going on using Care Pages and I'll be back to blogging eventually.

~Em

(via Diane)

Ringing in 2010 in Hawaii!

2010-01-23T22:29:00.000-08:00

I had an incredible gift given to me by the Burlingham family this year-- they gave me a trip to Hawaii over the week of New Years! I got to spend 7 days with them in Kailua, Oahu, and enjoy the beauty of the ocean (and a home right on the water) and breathe in the salt water for 24 hours a day.

Making the decision to go, however, was really difficult. Up until Dec. 24th I was in the hospital, really sick, and knew that if I were discharged in time for Christmas that I would be taking IV meds home with me for a week. I also knew that traveling would be hard, doing my meds away from my home would be hard and that it would especially be emotionally draining to be away from my family and being vulnerable with a whole new family. Not only did God bless me and get me out of the hospital in time for Christmas, but I was given the "ok" to go from my doctor as long as I kept up with my IV schedule and medication regimen. It was a huge leap of faith, and I know that without God's help in healing me just enough to go, I wouldn't have been able to spend that week there.

I relaxed, slept a lot, listened to the waves crash for 24 hours a day, looked at the beauty of Hawaiian ocean, surfed a little, paddled a little, and spent wonderful time with the Burlingham family who welcomed me in and took care of me with open arms. Thank you, Burlinghams for an incredible vacation that was much needed....and thank you, Lord, for allowing me to go and teaching me to trust you in that time.

Here are a few pics from the beauty that is Hawaii....ahhh, oh how I miss it....

~Em

Ps. Yes, the Obama family was staying on the same beach, about 5 or so houses down....haha. No we didn't see them, but did see a ton of secret service and military boats!

Above: the beach in front of our house..... Below: military boats lined up protecting our pres.

Me at the Royal Hawaiian hotel....famous, and very pink :)
Diamond Head....
Another pic of the beach in front of the house....
Judy and I all dressed up for dinner!

2010 already?

2010-01-19T22:43:00.001-08:00

Yep, it's 2010 and it's already been a whirlwind of a year that I didn't get the chance to blink and it's already the middle of January. I wish I could start to process all that's happened in 2009, but mostly before I post about the awesome/crazy few weeks I've had- I want to step back and say how grateful I am for another year to live. As I stood on a beach in Hawaii on new year's eve this year, I reflected on the fact that 2009 was a "rough ride" so to speak. Yet, I also reflected on the fact that God is continually showing me that He is in control-- not me. And as much as I want to say that I've got it all figured out, I don't and all I can do is trust.

So instead of a "resolution" for new year's I decided to pray specifically for this verse in my life- that God would shape me and grow me in character this year in this way:

"But blessed is the man who trusts in the LORD, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." -Jeremiah 17:7-8

So, though I'm a little late, I wish you all a happy new year....may 2010 be a year of full of blessings and joy for you all, and a year in which we find our confidence in the Lord.

~Em

Hope

2009-12-25T23:33:00.000-08:00

This Christmas, I learned an entire new meaning of the word Hope. I haven't had much energy to blog the last week as I've been in the hospital fighting another infection. As I was admitted last saturday, the first thing that came to mind was "I might miss Christmas at home", and almost immediately, I was filled with an unspeakable Hope.

As I think today of the story of Jesus, the entire reason we celebrate, I think of the amount of Hope that kept people going before the Messiah arrived. For 400 years, they had waited and hoped that the messiah would come save them- 400 years...without any response, or even a glimmer of hope. Yet they kept hoping that maybe the next year HE would come. When Mary was told she would have a baby, which seemed the most impossible thing on earth, the angel comforts her with the thought that "nothing is impossible with God", Luke 1:37. Again, the idea of hope. Hope that it's God's work, she's in God's hands and nothing is to big or too impossible that God can't do it. We were given a savior because nothing is impossible with God, perpetual Hope that God is in control.

I've read and heard the story of Christmas for many years and this year, it took on a whole new meaning. This year, as I was filled with Hope in the hospital for the 6 days leading up to Christmas, I never once doubted that I was in God's hands. I never feared that I wasn't being taken care of, and each moment I was worried or scared, God continued to bring to mind "Nothing is impossible with God". God continued to fill me with hope, drive out fear, and remind me I was loved. Nothing is impossible- coming home for Christmas, breathing easier, medications working, or even a cure for CF. Nothing is impossible with God.

So tonight as I finish up my IV medication and hit my pillow, I want to thank God for reminding me of that, showing us the Hope we have in Christ, and the incredible joy that comes from the simple fact that our savior was born. He was born to save and change our lives. He was born because God didn't lose Hope for his people. I am thankful for my family, who not only walked with me each step as I was cooped up in the hospital by bringing me food, keeping me company and helping me through the healing process. but more importantly kept hoping with me. They hoped right beside me- hoping that I would be home and well enough for Christmas (which I am), hoping the meds would work and we'd see this infection start to clear up, hoping that God would give me strength to fight, and hoping for miracles. I cannot express the thankfulness in my heart for a day spent with my family who loves me just the way I am,with time to rejoice in the life we've been given and time to celebrate Christmas with such love. Wow, what an amazing day. I am overwhelmed with hope, and overwhelmed with joy tonight.

Merry Christmas, dear friends and family. I pray you are as well, filled with hope.

~Em

Borrowing this "top ten" idea....

2009-12-15T22:34:00.000-08:00

So a fellow CF bro, Ronnie (check out his blog!) posts top tens every tuesday, which I thought was pretty sweet! Though I may not keep the tradition of doing it every tuesday, I really liked his top-ten this week and figured i'd steal the idea (thanks Ronnie, props to you!). I do always wonder what people's most played music on their iTunes is, so I figured I'd start with my posting the top ten iTunes songs I've played most. I was kinda surprised by the list, its a mix of everything :)

Top Ten songs on my iTunes

10. 360 Degrees of You- SheDaisy

9. Beautiful One- Jeremy Camp

8. That's When I Love You- Phil Vassar

7. In Christ Alone- Geoff Moore

6. Everlasting God- Chris Tomlin

5. Your Love is Strong- Jon Foreman

4. Passenger Seat- SheDaisy

3. Amazing- Josh Kelley

2. Blessed be Your Name- Tree 63

1. The Way You Look Tonight- Fred Astaire

~Em

CF Wine Opener Event

2009-12-11T00:03:00.001-08:00

Sunday I attended a first-time event for the Cystic Fibrosis Foundation here in Orange County called the "CF Wine Opener". A wonderful night of wine tasting and gourmet food tasting :). Multiple restaurants and wineries in the area came out and showcased their food and wine for all to taste and enjoy! Plus, Brian Malarky from the tv show "Top Chef" came to do a live cooking demonstration- that was the highlight of the night :).

I had dear friends Dannah and Brynne working the event with me (though we got to enjoy the food and atmosphere so we had a blast). The event was filled with incredible people supporting Cystic Fibrosis and raised $15,000 all going towards Cystic Fibrosis Research!! Many thanks to those who worked hard to put this event on and to those attending and supporting the event, it was a huge success and tons of fun....here are a few pics of Dannah, Brynne and myself working and having fun together :)

~Em

Yo-ho, yo-ho, a pirates life for me....Brynne and I selling Pirates of the Carribean mugs :)
Love you, ladies!

Thankful for life

2009-11-28T09:40:00.000-08:00

This year on Thanksgiving, I was able to spend the morning surfing at the beach! It was surprisingly warm, about 80 degrees so after taking at least 5 weeks off of surfing due to the swine flu I got up and headed west to enjoy the morning on the shore. The waves were nothing special, really small actually, but the sun was shining and my new long board (thanks Cesar!) was the perfect ride for the small 1-2 footers.

As I sat on my board looking out at the horizon I was overcome with a thankfulness for life. I was reminded that this year on Thanksgiving no matter the circumstances I'm frustrated about or the questions I've been asking God for months, I am thankful for the fact that I had another Thanksgiving with my family and the gift of breathing in the fresh air that morning. I spent the day choosing to think of how blessed and how much I've been graced with- family, friends, a home, my 26 years of health, all that God has done to use CF for good in my life and my relationship with the Lord. I am truly thankful this weekend and praying and asking God to allow this verse to ring true in my life- that I would be shaped more into a woman of thanksgiving, remembering how much God has already given me.

Be joyful always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus. -1 Thessalonians 2:11

~Em

Holiday Shopping for CF!

2009-11-27T09:09:00.001-08:00

That's right....now through Christmas day, if you plan on buying a Christmas movie (made by Warner films) buy it at CVS Pharmacy. Each Christmas film bought there, CVS will give $5 to the Cystic Fibrosis Foundation! See this article for more details :)

Can't believe it's the Christmas season!

~Em

Disneyland with the Family

2009-11-20T08:19:00.001-08:00

Tuesday we spent the day as a family celebrating my mom's birthday! (See post below :).

We went to disneyland for a few hours and then off to dinner at Taps in Brea (yum!). Check out some pics....Happy Birthday, Mom!

~Em

Happy Birthday Mom!

2009-11-17T08:14:00.000-08:00

Today is my wonderful mother's birthday! I won't share how old she is on this public blog, she might disown me, haha just kidding....But seriously, I want to share a little bit about my mom and her role in my life. I am so blessed to get to celebrate with her and my whole family later at Disneyland (I'll post some pics of that tomorrow). I thank the Lord for giving me a mom like her- she has brought me through so much and I truly believe God placed her in my life, and in our family for many reasons.

My mom is a woman who is incredibly selfless and she gives of herself every moment. I've heard many stories of families with children with CF and as I hear stories of mothers who are just like mine (selfless, encouraging, loving) and stories on the contrary of mothers who don't support their children, I can't help but be thankful for her sacrifice in my life. I am so lucky. When my parents had me, their first child, Cystic Fibrosis was furthest from their mind. I am sure they had dreamed that their child would be healthy, just like each parent dreams. When doctors told my parents the news, I know they went through a flood of emotions and thoughts. Just as any parent would experience, I'm sure it was one of the most difficult moments in life. But through it all, my mother, never, not once, let me feel like I was 'sick' or like I couldn't do anything. She was and still is my number one cheerleader- keeping me encouraged, keeping me focused on what's important, empowering me to embrace who I am and live my life well and loving me each step of the difficult road. She taught me to feel like I could do anything, that CF didn't need to control me mentally but that it was something I could live with and continue on with the dreams and plans I had for myself. She helped me dream and keep those dreams alive, and it's the greatest gift a mom could ever give.

As I've grown up, my mom has graciously allowed me and taught me to take care of myself. I am glad she taught me to be independent and yet if I need help, she's the first one at my side. At times when I feel alone or have felt overwhelmed, she is always there to help me pick myself up and work through it. Just these past three weeks, for example, she put down all of her work and responsibilities to take care of me. As I lay with 103 degree fever, she made sure I was eating and drinking and was right by my side when I was admitted to the hospital making sure I was comfortable...and makes sure that I stay on my toes playing cards ;). Each time I go through a hospital stay or a rough time with CF (Or not with CF) she is right there to encourage and love me through it all. She is a woman of wisdom and grace, someone I can go to in the midst of any part of life.

Happy Birthday, mom. You mean so much to me- more than this blog post, any birthday card and any speech could never express. You are an incredible example of someone who works hard, loves with each ounce of your being and is always hoping in the Lord for all things. You never give up and you sacrifice everything for your family. I thank God for you, for how He's brought you in my life and made you the strong, supportive, and loving woman that you are. Thanks for being my mom, my friend, and my encourager and my example of a Godly woman.

I love you so much.

~Em

Swine-free is the way to be!

2009-11-10T22:37:00.000-08:00

Here's a little update...bullet-point version style (Mostly because i'm so tired, I don't think I would make complete sentences!):

-I officially ended my IV meds this past weekend and pulled out my needle from my port on Saturday night! Praise the Lord, it feels good to be free!

-I am swine-flu free, no need to get the H1N1 shot, I've got plenty of antibodies to protect me.

-I am really wiped out, my stamina is low and I'm pretty sure my PFT numbers still aren't back to normal. I'll go back to clinic in 2 weeks to have a check-up...until then, I'm working out and working on getting my numbers back up.

-Went back to work today....so tired...but nice to be back...enough said :)

-Ready to surf? Not quite yet. Maybe after I don't get winded walking to my car after work. Hm.

-Appetite is back? Not yet....I'm working on it, it's slow but steady. My doc said the combo of meds I was on was pretty brutal, so even though my digestion is slowly getting better, my appetite is slow to return and it will once the meds get out of my system.

That's about it...stay away from swine-flu, peeps. It is a gnarly bug, I am blessed and grateful to be on the other side of it now :)

~Em

Update on Denise

2009-11-08T21:05:00.000-08:00

For those of you praying, here is a little update I've received today through a friend...Praise God, all has gone extremely well. Denise went into surgery yesterday at 4pm and finished just after midnight. By today at 3pm (less than 24 hours post-surgery!!) she was breathing on her own without any tubes, and by 7pm tonight she was awake and eating some Jell-O :)!! She is still in the ICU but everything is going great.

What an incredible miracle and also a mind blowing thought...to think that just over 24 hours ago she was breathing with her lungs and now she is breathing with someone else's lungs??! I mean, wow. I know she's got a huge road of recovery to go, this is just one step of the mile long process. But, she is doing very well and to be awake and breathing without support is an amazing feat. Please keep her in your prayers and I'll make sure I keep updating. Thank you friends and CF Community. I know she would be blessed to know she is being lifted up by so many.

~Em

Praying for Denise

2009-11-07T12:47:00.000-08:00

Right now, an old friend from my CF Camp days (back when we used to be able to go to camp) is getting a lung transplant! What an incredible miracle, a huge life change and a huge blessing. It's a huge surgery and huge recovery. Her name is Denise, and I ask you to join me in praying right now. Surgery is scheduled for 2pm at USC University Hospital.

If I could scan and upload an old photo of us, I would. But right now, please keep her in your prayers...

Thanks, friends.

~Em

Great Quote

2009-11-04T23:27:00.001-08:00

Props to my friend Dannah for this fabulous quote....it had to be posted on the blog considering my recent encounter with swine flu:

"Swine flu is the Kanye West of infection diseases.....

everybody knows about it and loves to hate on it"

~Em

First day out :)

2009-11-04T09:08:00.000-08:00

Yesterday was my "first day out"! I know, sounds cheesy to blog about that, but for me it was a big deal. Instead of wearing sweats and a t-shirt I put on some 'real clothes', did my hair and actually drove my car to meet my friend Kim for lunch! We went to a new place in Fullerton which had excellent, fresh, homemade, healthy food called The Greenhouse Cafe (I highly recommend it if you're in the Fullerton, CA area). I'd like to go back there once my appetite is back and try many things on the menu! After that, we walked around some vintage shops in downtown Fullerton. It was a lovely afternoon :).

I was exhausted when I got back but it was well worth the outing to feel 'normal' again. I always go through the process of getting back into my life when I get out of the hospital. I balance my health care and a slow gradual adding of my normal life things- like driving, and hanging with friends. It's definitely a process....but a good one. I'm blessed to be out of the hospital and as I reflect on the last 2 weeks, I see the progress I've made. Two weeks ago, I could barely stand up I was so dizzy from the flu and lack of oxygen and now, I had a day out in Fullerton and each day gets better and better :).

~Em

So glad to be home

2009-11-01T22:44:00.001-08:00

That's right...I am officially out of the hospital and home in my own house, sleeping in my own bed and eating homemade food! It's such an amazing feeling! I was discharged Saturday and after a discussion with my doctor we decided I would do another 7 days of IV meds just to make sure my body has fully kicked the infection in my lungs. I have two IV and one oral antibiotic that I'll continue for another week.

Because I spent the first 10 days or so of being sick fighting off the flu, my body still has some catching up to do to help fight this infection in my lungs. My lungs still aren't back to normal- my breathing still gets a little short and I'm getting tons of mucus out (which is a big sign that my lungs still aren't in the clear). Thankfully my flu IS gone (with sadly, the exception of my appetite's absence). So, with another 7 days of IV meds plus home-cooked food some gradual exercise and my own bed, I'm hoping to be back up on my feet and rearing to go in my normal life very soon.

I had no idea how much this swine flu took out of me I got until today, spending my first full day at home, all I wanted to do was sleep! I find that many times after I leave the hospital- though I am supposed to be resting, the hospital is not exactly the best environment for that. I am constantly interrupted, walked in on by doctors, nurses, interns, maintenance workers, you name it (if only they'd allow us to lock our doors....hmm...guess that would defeat the purpose of people taking care of you ;). Anyways, when I got to take a nap today without anybody walking in my room it was a beautiful feeling!

This week, I plan on doing my very best to re-gain my strength and stamina and fully recover. And I am extremely glad to be doing it from home :). As I reflect tonight before doing my next dose of medication, I am so thankful for the incredible USC staff of docs and nurses who really took care of me and helped nurse me back from the pit of the swine flu. It was a huge blessing to have people managing my health care for me when I didn't have the energy or strength to do it. I am so thankful for the care I received the last 14 days and thankful to be home to finish up the healing process.

~Em

So cute

2009-10-31T11:00:00.000-07:00

I'm not the kind of person that gets into halloween....but when I saw this random pic of a kid's costume, I couldn't help but post it :). Not sure who it is, it was on the internet....but bravo for being creative and adorable!! Maybe someday, Lord willing, when I have my own kids I'll get to dress them up all cute!

~Em

A Simple Letter

2009-10-28T21:09:00.001-07:00

Dear Food,

How I miss thee! Oh how I miss the joy of eating delicious appetizing food. Why can't I be hungry? Please start tasting good and settling happily in my stomach, I would greatly appreciate your cooperation in this matter.

Warmly,

Emily

ps. In case you didn't get it, I want my appetite back! I'm on day 14 of having this swine flu and my appetite has not returned....I'm ready to start wanting to eat again!

Sweet poster

2009-10-26T21:07:00.000-07:00

Just a little fun for today :)

This poster was up in the elevators at USC....gotta love the Trojan man stomping in victory on the little germ sticking his tongue out! Way to fight on, Trojans!

Go USC :)

~Em

A tasty treat

2009-10-25T15:30:00.000-07:00

I got a wonderful treat delivered by my dear friend Shelly and it hit the spot (and thats saying something since I still have very little appetite or desire to eat anything- so really, this was tasty!). Thanks Shelly, I loved every bite of the fresh organic, juicy, tasty berries and creamy tart- you can't find this in the hospital cafeteria ;).

~Em

Fridays and Saturdays

2009-10-24T18:16:00.000-07:00

Friday and Saturday nights are the hardest times for me in the hospital. Whew. Now that I got that off my chest! But seriously, they are the hardest times because it's when I would normally be out with friends enjoying my weekend and knowing that everyone else is doing just that makes it hard. Sometimes I forget while I'm here that life goes on outside of the hospital- people still have jobs, hang out with friends and live normal lives. For me, as life comes to a halt, I battle feeling discouraged, frustrated and alone. I find that the little things keep me going and God provides exactly what I need at exactly the right time and sometimes in the midst of discouragement all I have left is to trust that God knows what he's doing- knows why I'm here and what He's doing inside my heart as I am painfully growing and learning in the midst of a life in the hospital. Even when I don't understand, I know that God knows.

As I write this post (at 7:35pm, Saturday night) the Lord provided encouragement at exactly the right moment, I'm not kidding. In fact, I wasn't planning on putting this in my post- I thought it would be a post full of lamenting and frustration. But right now, as I look out my window here on the 6th floor, a medical helicopter is landing right above me bringing (most likely) life-saving organs to this hospital to save someone's life. Oh the hope it brings. As the windows shake from the helicopter above, I am reminded that God is in control, God works miracles, God brings life and God takes life. This hospital is full of miracles, they perform life-saving surgeries and transplants here and as I watch this helicopter land I can't help but thank the Lord for his timing and for saving someone's life with a miracle. I feel a sense of trust that God is bringing life to someone and a sense of grief that someone's life had to end for this to happen. And I feel a sense of joy to be able to witness it (well at least the helicopter delivery part). What a gift of hope....a gift of life for someone....a gift of hope to remind me that God is always working and is my source of hope. I can't help but smile knowing what a miracle is taking place and knowing it's all in God's hands and knowing I'm in His hands too.

...Thank you Lord for bringing exactly what I needed on this Saturday night....

~Em

Oink Oink..swine flu it is!

2009-10-23T11:02:00.001-07:00

That's right, just got the results from my H1N1 test that I took when I was admitted on Sunday. I officially have the swine flu which explains a lot of why I wasn't able to fight this off on my own! It explains why the flu attacked my CF as well and my body wasn't able to fight it off. I got an infection in my lungs so rapidly and so severely that I guess thats what happens when H1N1 interacts with CF.

There's not much they can do now since I've had it for over a week, but mostly I'll just stay put in the hospital until I'm feeling better and the virus is mostly out of my system :). Glad to know the official results, just thought I'd share. Other than that, not much has changed- I am doing IV meds, doing my treatments, resting a ton and staying put. I still don't have much of an appetite, but I'm slowly eating and keeping things in my stomach, I'm gradually getting better :). Please continue to keep me in your prayers, I am so thankful to be getting good care here at USC!

~Em

The flu caught me...

2009-10-21T22:06:00.000-07:00

I did my best to avoid this gnarly flu with hand sanitizer and crazy avoidance of sick people but alas, it caught up with me and last Thursday it hit me hard! I woke up that morning with a terrible cough and sinus headache and by that evening was burning up with a fever, chills and it only got worse from there :(. I fought hard all weekend (thanks to my mom who really took amazing care of me- homemade soup, making sure I drank water so I didn't get dehydrated, and helping me get through the terrible-ness that is the flu). My mom's a rockstar...

After fighting over the weekend by Sunday night it was clear that the flu had made its move into my lungs and I knew that an infection had kicked in. I wasn't able to sleep from coughing so much mucus out of my lungs and when I woke up with another high fever that morning I knew it was time to call my doc and get some help. I was admitted Sunday night and though I was reluctant to make the call, I thank the Lord for wisdom as when I got here my oxygen levels were way too low (I had too much stuff in my lungs to allow me to get enough O2). I knew once I saw those numbers that it was good for me to be here and I feel very peaceful knowing i'm in good hands. My fevers have gone away and now that I have some extra oxygen I am breathing better and making progress. I'm on IV antibiotics and working on getting rid of this gnarly lung infection....

Just wanted to update my blog readers, I'll keep posting to update but as of now, day 4 in the hospital, I am much more aware of what's going on. The first few days because I was so deprived of O2 I really don't remember or feel like I even comprehended that I was here. Now that I sit in my quiet room and reflect, I am overwhelmed with thankfulness to God for prompting me to be here. I don't know how to explain my thoughts right now with the exception of gratitude and peace. I feel peaceful that I am being taken care of and thankful God provides.

More updates soon...

~Em

The big island of Hawaii!

2009-10-05T11:20:00.000-07:00

I spent the week of labor day on the big island of Hawaii, I absolutely love it there. It was such a gift to spend the week taking care of my lungs, spending good time with my parents and enjoying the beauty all around the island. I actually noticed my lungs get better by the end of the week! It might possibly be my favorite of the islands...here are a few snapshots of our trip :)

~Em

We enjoyed many a sunset....

Hiked from the top of Pololu'u Valley...

...to the black sand beach below.... (And yes, back up again)

taught my dad how to stand-up paddle surf....
...in probably the most crystal clear water and cleanest beach i've ever seen....

yep....watched another sunset....

snorkeled....a lot....

...another one.......thanks Mom and Dad, it was a really wonderful trip....

Oh where has September gone??

2009-09-30T11:10:00.000-07:00

Wow, the end of September already....what the heck?!

Since the month decided to get away from me and haven't updated my blog, here's a recap of my September in a nutshell... I'm back to work at the same community college, interpreting and walking around the hot campus (thank goodness its finally cooling down now, lets hope it stays like this!). I went to the Big Island of Hawaii with my folks over the week of Labor Day and LOVED every second of the Aloha environment, warm water and balmy air. It was an awesome time having my body be restored away from the fires in LA and rest, my lungs and soul were grateful (yes, I will post some pics :). Followed that with some sweet surfing time here in Cali before the warm water goes away and ending it with last weekend in Denver, Colorado for a quick 36 hour trip to celebrate with college friends for the wedding of a dear friend, Eddie Kim (congrats, Eddie!!).

Whew! What a month huh? Overall coming off summer its been hard to adjust back to life at work and in the normal routine. I had such an incredible summer with all that happened with Pipeline to a Cure, going to North Carolina and spending sweet time with friends. It feels weird to be back into a fall routine, but I am grateful to have a job and to be back in the swing of things now. Hope your fall has started out well, dear blog readers :)
~Em

Standing Firm

2009-09-05T09:37:00.001-07:00

1 Corinthians 15:50-58
I declare to you, brothers, that flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. Listen, I tell you a mystery: We will not all sleep, but we will all be changed— in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: "Death has been swallowed up in victory.""Where, O death, is your victory? Where, O death, is your sting?"The sting of death is sin, and the power of sin is the law.
But thanks be to God! He gives us the victory through our Lord Jesus Christ. Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

I don't 'preach' very often on this blog, but all that I do and share here is rooted in God whether I talk about it or not. This sermon about heaven and eternity really hit me so hard, I had to share. I have been thinking about these verses all week- about the promise of NEW life, a new body and an eternity in complete peace with God--just as we were intended to be. We will have perfect bodies, no pain, no struggle. Thank you, Lord, that you have overcome death so that we don't have to suffer any longer. I am encouraged to keep pressing on, standing firm, and trusting in the hope given through the Lord.
~Em

Pipeline Pics & Wrap Up....

2009-08-22T22:33:00.001-07:00

Pipeline to a Cure, 2009, came and went and it was INCREDIBLE. Feel free to click on the label to see previous posts leading up to this one. The event was a huge success, and I'm sorry to my few and faithful blog readers for being so behind in sharing about it. This is going to be a long blog post (so much to share!!!) so get ready for some rambling, hehe :) The event was on July 18th, 2009, and it was an AMAZING night raising a total of $300,000 for Cystic Fibrosis Research!! We had 600 people in attendance at the Hyatt Regency in Huntington Beach, auctioned off some great trips and auction items, enjoyed an evening with Laird Hamilton and Dave Kalama as the hosts and got to hang out with various surf stars in attendance. It was a night to remember and for me, a night that has taken me over a month to really process and pray about because it was such a big night for me.

While yes, it's a dream come true to spend an evening with surf legends and stars, it is much deeper for me as I watch hundreds of people give their money, time and support to research that is so vital to the length and quality of my life with CF, it is one of the most humbling experiences I've ever had. Even now as I type this, tears form in my eyes because I think of the generosity and love that people poured out that night for me and many with CF....It was unreal and I am incredibly grateful.

I was the speaker that night so people not only got to know me, but got to know the REAL me as I felt God had led me to be open and honest about the depth of CF and it's affect on me not only physically but emotionally as well. As an adult with CF, I am truly grateful for the responsibility and joy it is to represent the CF community because as I stood up there and shared my heart for 15 minutes, I knew that the thousands with CF would be benefiting because they too, would be blessed with research from the money raised that night.

It's a night that is exciting and scary for me all at the same time because I talked about the good parts about being a spokesperson for this event (hanging with Laird and company ;) and the difficult parts about being an adult with CF- wondering what my future will hold, how long I will be healthy, will someone ever want to be in a relationship with a girl with CF??? Etc... It was a deep speech, something I had never done before. Last year's speech was filled with childhood memories, my love for surfing and my history as a woman with CF...and this year, I felt God call me to share more of my heart, and what's been happening this past year. And if you've been around on this blog much you've noticed that this past year has not been easy. I've spent more time in the hospital this year than previous years, and been faced with many decisions that come along with being an adult- how do I support myself financially (for example). Sharing this with 600 people was quite an experience and as soon as I stood up on that stage I KNEW that it was the presence of the holy spirit giving me words and courage to stand up there, it wasn't me. I was calm and ready, and my prayer is that my words ministered to the hearts of people there.

So as I reflect back (im sure more rambling will come), I am filled with gratitude and amazing memories of that night. I loved spending time at such a special night with my family and friends! I feel so much love from the 600 people around me that night and the support raised emotionally and financially has changed me. I feel blessed to be God's instrument and used for His glory, and I feel the joy of representing the CF community and knowing that my story is being used for good. I feel excitement in knowing that someday a cure for CF can be found and that I worked hard to see that happen, and most of all, I am thankful to God that I am alive to be a part of all this, I know it's in His plans for me to be here (gosh, this sounds like an oscar's speech ;).

Check out some pics from the night, and I'll probably be posting more random stories and thoughts as time goes on. This event has played such a huge role in growing me and changing me that I can't help but talk about it :)
~Em

Back on the grid!!

2009-08-14T15:30:00.000-07:00

Hello!!!

I know, it's been a few weeks since I've posted but now that I'm back from a wonderful trip to the Outer Banks of NC I am glad to be back and I'll be catching up on the blog this next week or so :). For now, here are some great pics from a wonderful vacation with my family. We had a great time at the beach, I surfed a ton, we cooked some great meals and had some quality time to spend together. Since we don't see each other often (We all live across the US), it's nice to really be together for that time....and you can't beat such a beautiful place.
Enjoy the pics, and stay tuned for some more posts this week catching up on fun summer events :). Anyone been anywhere fun?
Much love!!
~Em

My family on the ferry ride...

The cousins....tan after 2 weeks :)

Hello, OBX!!

2009-07-27T12:07:00.000-07:00

That's right...the fam and I are hitting the beach on Ocracoke Island for the next 2 weeks, its great! So if you don't hear from me, i'm here....just sitting on the beach and surfing a lot :). It feels great, I love the east coast :).

When I get back I'll get some pics from Pipeline up here, but until then- I'll be surfing!

Love to all!

~Em

Pipeline to a Cure, Tomorrow!

2009-07-17T18:50:00.001-07:00

That's right...the event is finally here!

Pipeline to a Cure, 2009 is tomorrow night at the Hyatt Regency in Huntington Beach, CA. After many months of preparations it is here, I am very much looking forward to this evening where CF awareness will be raised and money will be raised to support research. (Tickets are still available to the event as well as to enter to win a Toyota Prius! See my previous post about that)

Join me tonight and tomorrow in praying for the evening- pray the evening will go smoothly, pray for the people attending, pray that the money raised will go towards great research and a cure for CF, and keep me in prayer as I will be speaking and sharing my life with the 600 people there.

Thanks, friends...can't wait to post some pictures and share some stories of this great night with you :)
~Em

Win a Toyota Prius & Support CF!

2009-07-09T16:02:00.000-07:00

As a part of Pipeline to a Cure, this year, we have an amazing drawing to win a 2010 Toyota Prius!! It's brand new, gets 51 MPG and is fully loaded! I'd like to offer this to anyone here reading my blog that's looking to win a new car AND support Cystic Fibrosis in the process!!

Tickets to this drawing are only $100 which is a great deal for a new car :). The drawing is limited to only 600 tickets so everyone has a great shot. plus all this money goes directly to CF research. Check out our website for more information (Click on "Win A Prius" on the sidebar for more info about the drawing):www.pipelinetoacure.com

If you are interested in buying a ticket for the drawing (you do not need to be present that night to win), please contact the CF Foundation Office in Orange County, CA at 714-938-1393 and just let them know you want to buy a ticket for the drawing. Or you can comment on this post and contact me, I have some forms you can fill out to enter the drawing!!

Thanks, all for supporting Cystic Fibrosis!!

~Em

Hanging with my USC Team!

2009-07-09T14:54:00.000-07:00

Back in May, the USC docs and CF team did a Great Strides walk for Cystic Fibrosis at the Rose Bowl in California! Check out some fun pics below, we were sporting the cardinal and gold, of course :)

~Em

Kim and I getting ready to walk...
My friend Aaron and I hanging out before the walk starts...sweet USC shirts :)
The group walking and celebrating that we had finished!

Workin' on my speech...

2009-06-27T21:53:00.000-07:00

Yep, it's that time again...Pipeline to a Cure, 2009! See previous posts for details about it. I'm just chilling tonight, working on my speech so I thought i'd take a little breather and say hello on my blog :). As I am writing and thinking tonight about the support that is around me as I battle CF, I want to say thank you to everyone that does support me. You all are an incredible gift in my life, thank you- friends, family, and people I don't know for your constant prayers and love that help keep me going through the ups and downs of a life with CF.

Much love to you all!

Ok...enough distractions, back to my speech! The event is just 3 weeks away!

~Em

Paddling with Dave Kalama

2009-06-21T18:23:00.000-07:00

Last Saturday we did a "pre-event" to help generate some excitement and mainly awareness for Pipeline to a Cure coming up in just 4 weeks! So we hit up the back bay of Newport and thanks to the Newport Aquatic Center, we (the CF Foundation) were able to host an invite-only "Paddle with Dave Kalama" day! It was a blast and everyone invited was able to learn about Cystic Fibrosis and learn how to support our event coming up. We generated tons of interest, and about 60 people came to hear about Pipeline and CF, and many committed to be involved :). After sharing our story and our goals, the invitees were able to get primo paddle lessons with none other than legends Dave Kalama, Jeff Clark Mickey Munoz and Jericho Popplar. It was a GREAT day!

Thanks to everyone involved , it was a blast :). here are some pics from the event , props to my buddy Steve for volunteering to take these!
I love doing events like these :)
~Em
Off they go!
Tandem paddling with honoree, Mike Sullivan.
Kim, Dave Kalama and I :)
Rocking the new 10 ft paddle board.
Dave teaching lessons.
Meeting Jason Lezak, Olympic swimmer and hanging with Mickey Munoz!

Pipeline to a Cure 2009!!

2009-06-17T13:05:00.000-07:00

That's right...year #2 of Pipeline to a Cure for Cystic Fibrosis is coming! It's only 1 month away, Saturday July 18th- I am stoked!!!

I'll be posting and sharing my perspective as things go along- but as always, I'd appreciate and love some prayer for this event and the people who will be attending. This is an amazing night to share about CF so I pray people will understand the disease and do their part in helping us fund research for a cure :).

Check out our new website!!
www.pipelinetoacure.com

~Em

A Day with Laird!

2009-06-16T17:48:00.000-07:00

So, not much exciting has been happening lately...until now!!
I got to spend the day yesterday with Laird Hamilton, big wave, legend surfer. It was SO much fun! We had lunch and then headed out stand-up paddling in Malibu for an hour or so. I got private paddle lessons with Laird and even tried riding a wave in on the board- I was almost successful, haha ;).
It was a blast!!! I am getting excited for Pipeline to a Cure this year, it's going to be an AMAZING event. This was just the start of a fun summer ahead :)
~Em
The Malibu surf...a little cloudy outside but the swell was perfect :)
Pics of Laird and I...hmm..maybe I need a tan?

It's Summer!

2009-06-01T09:37:00.001-07:00

Well...almost summer...If the California weather would cooperate and allow some sunshine through!!

I am getting back into my surfing groove and as of yesterday I hit Newport Beach and the water was so much warmer than last time I surfed (which is before I was in the hospital for 3 weeks!). It felt SO good to paddle around, catch whatever waves there were (it was quite choppy and messy, really poor conditions but I didn't care :). It made me excited for summer to officially hit- sunshine, good surf, and long days with the sunset not until the late evening!
~Em

A Weekend in Santa Cruz!

2009-05-24T18:57:00.000-07:00

Two weekends ago (yes, it's taken me this long to update my blog...sorry folks...prepare yourself for an awesome but long story), I had an incredible opportunity to go to Santa Cruz with the Mauli-Ola Foundation to help put on a surf day for kids with CF in the Monterey/San Francisco/Santa Cruz area. It was an AMAZING weekend- my first weekend away from the hospital.

My dear friend Erin came with me and we enjoyed getting away from LA and the 6-hour drive up central California. We had a great time catching up- talking, and singing to some tunes, it was a really relaxing time. After arriving and meeting up with the other friends from the foundation who had made the trip also, we enjoyed our first evening in Santa Cruz with dinner on the pier (I'll post more pics once I get a copy of hers- I forgot my camera!). Brissa, Steve, Erin and I enjoyed a relaxing seafood (yum!) dinner and then got our sleep before waking up early on Saturday morning for the surf day...

Which was amazing! Our surf day ended up being a dream come true for me and many others who participated. We enjoyed a RARE 90 degree day on Cowell's Beach in Santa Cruz and had also a RARE 6 CF adults and 2 kids join us for the day. For me, it was a day filled with joy. I was able to get to know and spend time with CF adults which is not only rare but just doesn't happen in this day and age of CF. We are not 'supposed' to be around each other, due to infection control- but thanks to the grace of God and our extreme efforts to keep our coughs and germs to ourselves we enjoyed a day of pure blessing- talking, getting to know each other, swapping stories and just relating like none other. One of the best parts of the day (an un-expected gift) was the opportunity to reconnect with 2 dear friends Isa and Ana Stenzel- CF twins who I've known since I was 10 years old (see pics below). Isa and Ana have been such an encouragement and blessing in my life, they were my CF camp counselors back in the 90's and we lost touch shortly after camp. We haven't been able to reconnect until just this year and none of us could ever have dreamed we'd be SURFING together almost 15 years later!! God is so good!

We made some great connections and had a blast at the surf day- followed by lunch with the CF adults (following contact precautions of course) and dinner with the Mauli-Ola Foundation crew at a beautiful home in Santa Cruz! Erin and I drove home Sunday morning rejoicing over the relaxing weekend, fun stories, and rejoicing over the people we spent the weekend with.

I couldn't have asked for a more encouraging weekend. I spent the day with new and old friends- all of which we just knew each other's stories. You know that feeling when you can just be 100% yourself and it's so comfortable? It was just like that with people I just met that day. We had so much in common, it truly like being with family. The twins and I just picked up where we left off- we had so many stories to share, life to catch up on and we literally didn't stop talking for hours. It was so good for my soul to be with them. I am so thankful to have been out of the hospital and able to spend the weekend in Santa Cruz!! The CF community is an incredible group of people- I am blessed and priviledged to be a part of it and to be an adult in the small population of CF adults. I definitely hold the memories from this weekend so close to me and thank God for my new and old friends.
~Em

Isa and I next to a huge pelican on the wharf!

My dear friends Ana and Isa, we reunited after 15 years. This was their first day surfing!!

Getting ready to surf...

Lunch with my new friends :)

Home is where my comfortable bed is

2009-05-13T09:10:00.001-07:00

That's right, I'm HOME!!! After 3 weeks exactly, I was finally released from the hospital and arrived home Monday afternoon :). It is such a surreal feeling to all of a sudden be done with the

'hospital life'. Nobody is telling me what time to eat, or walking in my room in the middle of a nap, taking me order for dinner, taking my blood at odd hours of the night or asking me to get on a scale while I've visiting with friends! It's like I no longer am focused solely on my body but I have the freedom now to decide what to focus on, it's kinda overwhelming yet wonderful!

Monday, I arrived home and ate some lovely homemade tacos made by my sister, took a long shower (in my own shower!!) and ended up napping for a good 2+ hours...it felt great! I slept in my quiet room with the birds chirping outside (not machines beeping in the hallway)!!

Thank you, Lord, that I am home. I am overly thankful for the incredible care I received in the hospital, for my doctor who genuinely cares about me, and for the many people who sacrificed their time, gas money, and energy to come keep me company and bless me with their encouraging hugs and smiles. As that long 3 weeks comes to a close and I begin to regain my stamina and adjust back to life, I am just very thankful :)

~Em

Loving My Mom

2009-05-10T09:06:00.000-07:00

Happy Mother's Day, Mom! My mom is pretty great, if you've had a chance to meet her, I KNOW you would see the amazing qualities that make her a woman I am so thankful for in my life. Here are some of the great things that make up my mother (this list could go on and on, but here is just a small sample):

-She is always sacrificing herself for the needs of her family

-Throughout my life she has always worked so hard to provide for us

-She has an amazing heart full of love for each person she meets

-She is one of the smartest women I've ever known.

-She is a prayer warrior, always praying for the people she loves. Her faith is glorifying to God.

-She makes me laugh when I'm grumpy :)

-She cooks yummy meals, Bon Apetit' style!

-My mom is a wonderful hospital companion- she gives up so much time and energy to decorate my room, bring me clean clothes, and keep me company through scrabble games and great conversation.

-She is always supporting everything I do, she is my #1 cheerleader in life.

-She has an amazing ability to stay positive and encourage- she always sees the silver lining no matter what is happening.

Thanks, Mom, for being you, I love you :)

~Em

Almost 3 weeks!

2009-05-10T00:22:00.000-07:00

That's right, this is the longest I've been in the hospital since my senior year in high school...geez. Here's a little update on how things have been going. First off, I've been blessed with great care. as much as I don't enjoy staying, I am thankful for the care and love I've received from my CF Team and nurses here on the floor. Thanks, USC!

It looks like I should be going home on Monday, which will make it a total of 21 days here...wow! I can't believe I've been here so long, i guess I've sort-of gotten used to the routine and just the way things run. However, going home to eat home-cooked food and sleeping in my own bed will feel glorious. I've had to stay a few extra days because unfortunately, my insurance company would not authorize me to go home on 4 IV antibiotics. Even though I've been doing home IVs since I was young, doing 4, plus me having a previous allergy in my course of meds here posed to be a liability and they'd have to send a nurse. Sending a nurse plus liability for the insurance meant that if I needed to continue IV treatment it would have to be here at the hospital...so here I remian.

I had hopes of going home last week but had to take the blow and stay here a few more days to allow my meds to kick in and finish out this course of treatment. The good thing is, when I get home, I'll be officially done and glad to have a break from all this- no home IV treatments to continue :). As I endure the last few days, I ask for your prayers for my patience, for stength to keep going and keep fighting, and prayers for my lungs (and lung function) to bounce back up to baseline allowing me to breathe well and get back to my active life!

Thanks, friends, for continuing to be with me in this journey, for continuing to support me as this has been a LONG 3 weeks, and for your encouragement and love- it has come at exactly the right times :)

~Em

Team Emily is AMAZING!!

2009-05-05T12:16:00.000-07:00

On Saturday, dear friends and family gathered at Dana Point Harbor to walk in support of me and the many around the US with Cystic Fibrosis. Team Emily ROCKED!! We had over 40 people come out for my team alone, wear our sweet green shirts (thanks Mike, everyone still loves them!), and raise awareness and funds for research. I don't have the final total yet, but we approximately raised close to $9,000 and considering our economy that's amazing! I'll post the final numbers when I get them :).

Thank you, dear team- far and near. Thank you to those who donated to our team, and to those who participated. I felt an incredible sense of love and blessing as I wasn't able to attend. Sitting in the hospital, knowing that the people I love were cheering me on, giving up their time and energy to walk in my honor was the best gift of encouragement I could have received. I was blessed beyond words, and from the looks of the pictures and stories I heard, sounds like everyone had a blast! Here are some pics from the day...look at that awesome team :)

Love you, Team Emily!

~Em

Psalm 40:1-3

2009-05-03T23:55:00.000-07:00

I waited patiently for the LORD;
he turned to me and heard my cry.

He lifted me out of the slimy pit,
       out of the mud and mire;
       he set my feet on a rock
       and gave me a firm place to stand.

He put a new song in my mouth,
       a hymn of praise to our God.
       Many will see and fear
       and put their trust in the LORD.

Team Emily!!

2009-05-02T00:00:00.000-07:00

Saturday, May 2nd...Dana Point, CA...9am...

Team Emily will be walking to support Cystic Fibrosis!!

Please consider making a donation to support CF research and ultimately a cure- I am honored and blessed by the many who rally behind me and the 30,000 Americans with CF. It is truly a huge gift I could never repay.

~Em

Random Musings from USC...

2009-05-01T13:53:00.000-07:00

I've grown accustomed to (the good, the bad and the ugly of life here at USC)...

-The sound of helicopters landing on the roof in the middle of the night, and praying for the patients who are receiving organ donations!

-Distinguishing my doctor's voice and laugh through a closed door while he puts on an isolation gown

-Sleeping through beeping, the testing of fire alarms and people taking the trash out at 3am

-Eating my food on a tray

-Directing the blood 'vampires' as I call them as to which vein they should poke next :)

-The blessings of friends and family taking time out of their day to email, text, or stop by to visit.

-Wearing sweat pants and a sports bra...holler!

-Incredible nurses coming in with a smile to cheer me up

-Answering the question "did you go to the bathroom" and giving details each day, haha

-Playing the 'order my food' game which consists of: giving my order for breakfast, lunch and dinner by choosing whatever sounds good AND whatever looks good here...tricky!

-Peeing many times in the middle of the night because I've got bags of IV meds dripping in me!

-The days going SO fast and then wondering what the heck I did (thanks, God for giving me patience)

-The lovely view of the park and homes up on the hills of LA

-The purring sound of my IV pump as I sleep which thankfully drones out the busy-ness in the hallway outside

Just a few little observations I've made during my stay here to let you guys into my 'world'...!

Happy Friday!

~Em

9 days in...

2009-04-30T00:13:00.001-07:00

It's been a long 9 days, but to be honest- it's been completely God's strength and not mine. I can't believe the week has flown by and I'm still standing on two feet :)...Here's a little update.

After coming in last Monday I spent a whole week on the CF floor at USC. I was put on 3 antibiotics to help clear this infection out and one of them I had an allergy to (Imipenum). By Sunday night my allergy was heightened so much that my heart was in pain, my throat was swelling and I couldn't stop coughing as the itching and burning spread throughout my body. It was such a painful and frustrating experience that my doctor discontinued the med, and Monday had me put in the ICU yet again to try a new one (Cefepiem). I spent 24 hours in the ICU and was thankfully moved back here to the 6th floor where it is a much happier, quieter, friendlier place. Thanks be to God who seriously got me through that time!

Now, I am taking 5 different IV meds to treat not only the bacterial infection but also a fungal infection that has grown inside my lungs. So, I am thankful to have meds that I am not reacting to and also meds that will be targeting the specific bugs in my lungs. It's been 9 days so far and I don't know when I get to go home, but I sure hope it's soon.

I am willing to hang in there and really kick this infection, so I pray I can keep going and these meds kick in. That's all for now...time to get some much anticipated sleep.

~Em

Fuel TV

2009-04-27T23:39:00.000-07:00

A week or so ago I posted about Fuel TV doing an interview of me for Pipeline to a Cure... Well, it aired today and will air again tomorrow on Fuel TV, 11:30 and 2:30 (california time). I'm still working on seeing if I can get an online clip, so far no luck, but if I do I'll post it. If not, and you get fuel tv, check it out tomorrow (tuesday, april 28th)! I, myself, will be watching it when I get out of the hospital- my fabulous parents taped it for me :)

~Em

My God is With Me

2009-04-27T18:10:00.000-07:00

As i've been in the hospital, I've been reminded of God's faithfulness through some songs that we've sung in church lately. This song, by Matt Redman has been at the forefront of my mind, really bringing me comfort. God does not let us go no matter what we go through :)

~Em

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

Hospital Time

2009-04-24T10:13:00.000-07:00

I know, I know...I meant to post earlier this week, but I just didn't find the time nor energy to do so. I have been admitted into the hospital since Monday evening and it's been quite a busy week. I've been fighting an infection for about a month now and just haven't been able to kick it. So on Monday I visited my doctor for a check-up once again and my PFT numbers had dropped, I had a fever, and was so fatigued from being short of breath and coughing a ton that I knew...it was time for me to be admitted.

So, here I am. I have been getting excellent care from the nurses and docs here at USC. One of the biggest reasons I'm admitted and probably staying longer than I had thought is that I am on a drug that I am allergic to. Remember this post? Well, I am still allergic to Imipennum but as i turns out, it's one of the only meds that is successful in fighting the bacteria in my lungs. So I am stuck being on this med and suffering through the itching and burning sensation throughout my body each time it is infused through IV. Blech! I am taking drugs to counteract it, so far I am making it through.

I'll continue to post updates on here about how I'm doing and hopefully I can be headed home before the CF walk next weekend. It's been a challenging week, more on that later, but I know it was the right decision to come in and get my lungs back up to speed. I can't believe it's already friday!
~Em

The Getty

2009-04-19T18:34:00.000-07:00

I love Fridays!
Because we had the day off and wanted to do something fun, my friends Dannah, Jonathan and Mark and went on a Friday adventure to the Getty and then to Westwood for dinner! It was a beautiful day we could see over all the city and the ocean down by Santa Monica...what a wonderful way to spend a sunny day in So Cal. Good times and good friends!
~Em

Interview Update

2009-04-19T17:56:00.000-07:00

It went great! I was interviewed for a show called "The Daily Habit" on Fuel TV and it will be aired next week, April 27th!
They asked me questions about CF and Pipeline to a Cure, coming up in just a few months- i'm getting excited! This was an awesome opportunity for Pipeline to get some press leading up to our event, Fuel TV is the channel for the action sports industry so many people who are into surfing will be watching :). Hopefully, they'll want to get involved in the event!

Overall, it was a fun experience- a real tv studio and a chance to share my heart for CF with people- can't wait to see it air. If they have it online next week, hopefully I can post it. If not, i'll post the date and time for anyone that has the channel to check it out!
~Em

Interview Tomorrow

2009-04-15T22:41:00.000-07:00

Pipeline to a Cure 2009 is on it's way! And what better reminder than to be headed to an interview in the morning for Fuel TV, and tv channel for surfing, skating and other action sports. They are interviewing me about this year's Pipeline to a Cure and helping us get the word out about CF and this gala fundraiser. :)

I'd appreciate any prayers for me as I face brutal LA traffic in the early AM and also that I can share my life, story, and excitement for Pipeline. I'll let you know how it goes and give info about when it will air. It's a small tv station, so maybe it will be found online? Not sure, but i'll know more tomorrow!
~Em

Cystic Fibrosis Documentary Film

2009-04-08T17:23:00.000-07:00

Thanks to my friend, Nate, who posted this on his blog- I thought i'd continue to spread the word about a new documentary film coming out about Cystic Fibrosis. It's about a girl named Eva, telling her story about living with Cystic Fibrosis and the process of a lung transplant. The film hasn't been released yet, but I posted the link for the trailer below. Can't wait to see it, I am a fan of people's stories being told! Let's get the word out about CF and this awesome story.

Check out this link:

65_REDROSES

~Em

New Research on the Horizon!

2009-04-05T23:00:00.001-07:00

A few weeks ago, the CF Foundation announced some big steps in CF research!

The drug VX-809 ,has moved into Phase 2 Trials! They will begin testing this drug on CF patients to see how it works, as we speak. This drug is the first drug to actually correct the CF defect instead of just treat CF symptoms...so it's really promising! Click on the link above to read more about it.

I am stoked with this news! It's a real promising drug. Join me in praying the researchers continue to find good results as the go through the trials and that there are patients eligible to participate. Thanks to everyone who has supported CF, our hard work is paying off with some great studies being done :).

~Em

Team Emily is underway!!

2009-03-31T15:50:00.000-07:00

The Haager family hosted our annual Team Emily Kick-Off BBQ on Sunday to get our Great Strides Walk Team on its way!

Check out some fun pics from the afternoon. I am stoked for another year to walk and to have people I love walking beside me. Thanks to my parents for hosting yet another successful and fun afternoon in the backyard :)
~Em

This is the awesome cake Julia made for our team :). Love it!

Julia and Mom, sporting their Team Emily gear
I love my mom!
The Martins rocked the house :)
My girls :)

Great Strides is Coming!!

2009-03-27T17:23:00.000-07:00

Team Emily 2009 will be walking in Dana Point, CA on Saturday May 2nd!! Come join us!
See my Great Strides Website to join my team and walk with us, and/or donate to finding a cure for CF. Any donation is appreciated :). Great Strides happens all over the United States so if you can't walk with us, consider joining another team or creating your own team- go to www.cff.org/Great_Strides for more information.

Go Team Emily!
~Em

An itchy update

2009-03-19T10:26:00.001-07:00

Turns out, I'm allergic to Imipenum! Yuck. My slight itch on my skin progressively got worse with each dose of medication and by Wednesday morning it felt like my whole body was itching and burning from the inside-out when I infused my medication.

After much discussion with my wonderful doctor, Dr. Rao, we decided to give me a week off of IV meds and re-evaluate my progress next Wednesday. I readily took this break as it's been exhausting to keep track of my meds every 6 hours. I'll be spending this week exercising a ton, sleeping extra (thanks to no medications I slept a full 8 hours last night!) and praying my lung function can bounce back up on it's own. Hopefully I had enough medication to kill the infection brewing in my lungs and my pulmonary function levels will jump back to my baseline. If not, it may be hospital time for me (but I won't worry about that till next week!)

Thanks for the prayers and support, friends- it's a blessing to know I have people backing me up! Much love to all :)
~Em

A Little Itchy?

2009-03-17T09:03:00.000-07:00

Hmm...as I was awake at 4am this morning to do my IV infusion I suddenly was very itchy all over and just couldn't stop scratching! Is this a side effect of the medication or am I developing an allergy to Immipenum? Hmm...we'll see if this continues, but it is quite uncomfortable!
~Em

A Round of IV's

2009-03-13T22:57:00.000-07:00

After fighting a sinus cold for a few weeks I am bummed to say that my cold traveled to my lungs and has brought my Pulmonary Function levels down, increased my mucus and has and made my breathing difficult. So I started a round of IV antibiotics this week to fight the infection and bring my lungs back to normal. I am thankful to be able to do these medications from home and not from the hospital :). Though it takes more coordination of my schedule and extra effort to make sure my meds and treatments are done, I am happy to be sleeping in my own bed!

I ask for your prayers these next two weeks:
-Pray the meds will be effective and my lungs will bounce back to my normal function levels
-Pray I can get some rest. My meds are every 6 hours and have some gnarly side effects.
-Pray I can maintain life as well as be careful to care for my body's needs

Thanks, friends...and if you encounter some random blog posts on here, it's because i'm up at odd hours pumping meds into my system and trying to keep myself awake ;)
~Em

Hawaii Article

2009-03-11T15:54:00.000-07:00

Remember how I went to Hawaii in December with the Mauli-Ola Foundation?
Here's an article put out by Transworld Surf Magazine with some press and photos about our surf day for Cystic Fibrosis. Good times!

~Em

Loving 26

2009-03-08T22:03:00.000-07:00

Like I said in my previous post, I love February...it just happens to be my favorite month . And a few weeks ago I turned 26! Yes, 26...which before my birthday was a little daunting knowing that it was now closer to 30 but now, a few weeks after, I am in a place where God is really teaching me and I am learning a ton. I have been overwhelmingly THANKFUL to have had 26 healthy years of life. I rejoice in the blessings God has given me, in the fact that I am alive and well and I am excited for what is ahead.
I want to take this time to say thanks- thanks to the Lord for 26 amazing years to live and breathe . Thanks for all the people in my life who continually love me and shape me by God's grace, and thanks for an excitement for many years ahead. I love 26...and I love knowing God is in control of the next 26 :).
~Em

Here area a few pics from a wonderful birthday weekend away in Catalina! Fun times with my Life Group! For the record, I am now in love with this island :).

February Birthday Fun

2009-03-01T16:12:00.000-08:00

February is my favorite month...why? It happens to be the month where I get to celebrate so many friends and family's birthdays (as well as my own)! I get to celebrate both my sister and dad, as well as many friends along the way...February is a great month :).
Happy Birthday to dear friends and family, it was a blast celebrating with you this month! Here are a few pics from just one of the celebrations I was able to be a part of!
~Em

Celebrating Mariel's 30th! Thanks Denise for hosting a great breakfast for the girls :)

January Fun

2009-02-12T16:03:00.001-08:00

YAY for Road Trips! Especially random ones through random states...
I spent Presidents Day weekend in the Midwest! It was a little spontaneous trip that turned out to be a blast. I headed first to Indiana where Bethany and I met up with Judy, stayed there one night and then we hit the road...here are some highlights :).
It was -16 degrees when we left Fort Wayne, Indiana...check out the snow-covered Indiana as we drove...

We lasted about 10 minutes playing in the snow the night we arrived...we were determined to make a snowman, but alas, the snow was too powdery...
On the road, one of our BIG goals was to see the GIANT BASKET! That's right in Newark, Ohio, the Longaberger Basket Company has a 7-story office shaped like a basket!
AWESOME...
We stopped for lunch in Zanesville, Ohio to visit with my grandparents and aunt. It was a blessing to see them, I love them so much...

We arrived in Pennsylvania after a memorable trip across Indiana, Ohio & a little bip into West Virginia...good times, random sights and good laughs. We arrived and stayed the rest of our long weekend with dear college friends, Kimi and Mike who live just outside of Lancaster, PA. This is the whole group :).
We played as the snow fell...
It was a beautiful, cold, snowy weekend...we visited all over Amish country, downtown Lancaster, and Hershey, PA.
Celebrated Kimi's Birthday!
Visited Hershey's CHOCOLATE WORLD...that's right...a free ride of how chocolate is made with a free sample at the end? And then a giant gift shop with every Hershey candy known to man? Good times indeed...

It was a great weekend to catch up with family and friends. Thank you, Kimi and Mike for hosting us, I am so thankful for your friendship. Can't wait for us all to be together again!
Thus ends my little excursion in January...the end :)
~Em

The Best Mac-n-Cheese Ever

2009-02-10T23:14:00.001-08:00

That's right people, if there's one thing you need to know about me...I love food. Good food :).
I want to give a little shout-out to my mom for making the best Macaroni and Cheese that I've ever tasted (and yes, it's so good and i'm such a food geek that I took a picture!).
Today was a long day- I spent 14 hours in a hospital room at USC participating in a clinical trial for Cystic Fibrosis. I signed up for this study knowing that the first day was the longest- I took the drug and then they took blood samples throughout the day so I hung out, watched some DVDs (big thanks and hugs to Kim who graciously kept me company!), and was a guinea-pig for this new drug that could possibly help aid inflammation in the lungs. I'm saying a little prayer that this study produces good results thus helping CF patients worldwide :).

...AND after a long day at USC eating hospital food, I was SO glad to come home and eat some fabulous macaroni, it was such a treat...
~Em

Where did December go?

2009-01-28T19:57:00.000-08:00

As I promised, I'm back with a little update to catch ya'll up to speed on what's up with Emily :).

December flew by, as I headed to Hawaii for 6 days (see this post). It was a fabulous trip!

6 days later (about the time I fell off the blog world) I headed to the hospital at USC for a 'tune-up' in clearing out infection in my lungs and also to get sinus surgery for the first time ever...Thus, the reality of CF caught up with me and though I felt great in Hawaii, I couldn't avoid the need for some IV meds and clearing the infection festering in my lungs. Both the tune-up and surgery went extremely well and though I endured 10 days of being admitted in the hospital (it was rough during the Christmas season), I was blessed by friends and family during that time. God provided many to help keep my spirits up :).

Here's a pic of a little Christmas party some friends threw in my hospital room:

I ended up being there 10 days when finally, by God's grace I was able to go home Christmas Eve, and though I was a little drugged up on pain medication from my surgery on the 22nd, it was a blessing to be home with my family for Christmas day. We had a great time (sorry no pics, I wasn't totally aware so no pics were taken)- good food, good family time and a long nap made my Christmas one of the most relaxing times ever.

It took 4 weeks or so for me to really start feeling well after IV's and surgery- the surgery recovery was more of a process than I had anticipated. I am NOW glad to have done it but during those first 2 weeks afterwards, man- it was rough...snot, blood, drainage, you name it (I won't get too graphic...and I didn't take pics knowing that it might gross you out). All that is to say, I had excellent care both from Docs, nursing staff and at home, nurse Mom and Dad. Thanks to God for providing all I needed and helping me recover well!

~Em

1 Month Later...

2009-01-25T21:22:00.000-08:00

Yes, that's right, for my few faithful blog readers (I hope I haven't scared you away with my lack of posting!), I'm back and on the blog with updates, a whole new year of sharing God's working in life, and a commitment to just being real and being who I am...a constant area of growth for me as I take life day by day.

With that said, though yes, I posted a month ago, so much has happened that I really look forward to sharing in the next few days now that I'm motivated to be back on this thing :). I've spent the last few weeks really in a place where I was introverted, having a hard time being public, if you will, about things going on- so I thank you, friends, for your continued support and love even if I've been absent.

More to come this week...but for now, on January 25th, I wish you all a Happy 2009. As I look ahead for me, I have no idea what God has in store which is both exiting and scary. I pray a new year of blessings will be for you all, and I look forward to seeing what God has in store.
Thanks for hanging in there and checking in to my blog!
~Em

Merry Christmas

2008-12-26T00:49:00.000-08:00

And there were shepherds living out in the fields nearby, keeping watch over the flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in a town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: you will find a baby wrapped in cloths and lying in a manger."

Suddenly a great company of heavenly host appeared with the angel, praising God and saying, Glory to God in the highest, and on earth peace to men on whom his favor rests."

Luke 2:8-14

Merry Christmas !

~Em

Hawaii (Part 2)

2008-12-17T09:59:00.000-08:00

As I said in my earlier post, see Hawaii Part 1, the Mauli-Ola foundation graciously sent me to Hawaii with a team of people to help run two events to raise awareness and funds for Cystic Fibrosis. Also part of that trip was ton of networking with surf companies and surfers to share with them about CF and the connection between CF and surfing/salt-water. We got to go to the O'Neill Sunset Contest and then the Pipe Masters contest (though the contest wasn't going the day we were there- it was all set up and ready to go). Through it all I got to meet some amazing people and share my life and story with them- and hopefully people know a little more about CF and want to get involved!
Here are a few pics of the contests, and awesome waves at Pipeline and fun people I met :)
~Em

Pipeline Masters 2008

Watching the waves & the pros surf at Pipeline- 15 ft. this day.

The crew watching Pipe at Mick O'Brien's house

Meeting CJ Hobgood- he won the Sunset contest that day!

Erin and I at the Sunset Contest

Hawaii (Part 1)

2008-12-12T13:53:00.000-08:00

There is so much to tell and so many pictures to include!!
But let me first share the purpose of my trip and what we did...The Mauli Ola Foundation graciously sent me to Hawaii and paid for our team to go- we put on 2 events for raising awareness for Cystic Fibrosis. The first event was a golf tournament- we had many different surf companies and their surfers join us for this event and we raised money to put on a surf day for CF kids on the island! That was the highlight of my trip...seeing parents and kids get totally blessed by pro surfers from Volcom and Da Hui, it was an amazing day! We made sure that all contact/cross-contamination procedures were followed, so the kids were totally safe and each kid with CF got a private surf lesson from at least 2 pro surfers!!
A major thank you to Volcom for providing not only surfers, but an incredible heart behind the event- they truly loved on the kids. Also, major thank you to Da Hui and big surf influences on the island such as Mick O'Brien and Kala Alexander...everyone worked so hard to make that day happen, it was an awesome experience for the kids. Each kid came away with amazing memories :).
~Em

Check out this volcom blog to see pics from the golf tournament and surf day (scroll down to 12/5/08 and 12/7/08)...
http://www.volcom.com/flash/new_futures/provinggrounds/indexblog.html

Here are a few pics (I made them smaller so I could fit more in...there were so many to pick from!)

Mauli Ola Golf Tournament

Me, speaking to the golfers about CF

Erin and I rolling around in our golf cart...we didn't golf, but we had a lot of fun :).

Hanging with the Volcom team!

Hanging with the Mauli Ola Boys

Surf Experience Day for Cystic Fibrosis
Props to Volcom & Da Hui

Me and Mikey G...one of the managers for the Volcom team. Raddest guy ever!

Pro Surfer Alex Gray with 2 CF patients...rock on!

Me with surf pros, Kala Alexander and others from Da Hui

Everyone rocking the surf day on the beach at Haleiwa Beach Park

Me and Volcom pro surfer, Claire- she is a stud!

Where to start?

2008-12-09T21:28:00.000-08:00

It's been about a week since I've posted, thats because...I've been in Hawaii! I didn't get a chance to post on here before I left, it feels like it was a whirlwind of getting there and then getting back today, but it was an incredible trip!! The purpose of the trip was to go with the Mauli Ola Foundation and put on a few events to benefit Cystic Fibrosis and kids with CF by putting on a surf day for them. It was a great trip- I learned a lot, had so much fun and fell in LOVE with the North Shore of Hawaii :)

I'm so wiped out and headed to bed (we took a red-eye flight last night and I didn't really nap much today), but I will post more soon (I won't wait forever to post) and write about all the fun adventures that were had...until then, Aloha!
~Em

2 Corinthians 12:9

2008-12-02T22:37:00.000-08:00

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."

This verse really hit me at church on Sunday, so I thought I'd post it. I am really learning to trust that God is truly taking care of me and strengthening me. I am learning to lean not on my own strength, because I run out of that real quick, but to let God be my source of strength.

~Em

I'm still Learning...

2008-11-18T22:14:00.000-08:00

No matter how old I get, I am still learning to accept and be 'ok' with life with CF. Each time I think I've got it down, I seem to learn new things about balancing my health and my life. These last few days, as there have been lots of fires around and smoke in the air (see my previous post about that), I've had to take a step back and get away from my normal life and thus allow my body to come first. I spent about 24 hours feeling very ill and not breathing well- It's a difficult thing emotionally to realize that my body must dictate what I do, where I go and even in this specific case, whether or not I can be outside!

I've been battling the last few days the idea that it's so frustrating to have a job and not be able to do it (i'm not able to work because all my classes that I interpret take place outside, so I can't be out breathing the smoke). I want so badly to be independent and self-sufficient yet each time I turn around, I just can't and my body/CF get in the way. I want so badly to live that normal life- be just fine outside in the smoke, go and do what I would normally do and feel like I am functioning normally, feel like I can contribute to society with working, playing and being as I always am.
Don't get me wrong--I've been so blessed to have a place to retreat to with family, away from LA and away from the smoke. It's been good for me to let my body and lungs heal and not expose my lungs to more terrible toxins. And by all means, I don't want my complaining to be overshadowed by my gratitude that I am taken care of physically and that God has met my amazing needs in caring for my body. I am so grateful to be able to take care of the body God's given me...however, I just want to express the interesting battle that goes on inside me. For those of you who may not know much about CF, this is a little taste of some of the emotional frustrations that go alongside being an adult with this disease...
Above all, I am grateful God continues to give me grace through my frustration and until a cure is found for CF, I'll just keep on learning to balance my care for my body and my living a 'normal' life in society...I may not always like this battle for balance, but at the end of the day, I am still learning.
~Em

Fires in California

2008-11-16T17:55:00.000-08:00

Most of you have probably seen the news and heard about it, but it's been pretty scary out here. Diamond Bar, my city, is currently threatened by the fires as are MANY others across So Cal. They have evacuated a few neighborhoods, very close to mine, and the fire is up over the hills. T

These fires are raging pretty quick and the Santa Ana winds are fueling the fire. This link is some pics of what it looks like outside right now...yuck.
Please keep Southern California in your prayers- pray the winds and heat can calm down, pray for the firefighters, residents that lost homes, residents in shelters, and pray these fires can be extinguished quickly.
Thanks friends,
~Em

A Little Health Update for November

2008-11-11T22:18:00.000-08:00

Can you believe it's already the middle of November? Sheesh! I thought I'd throw out a little update on health, life, and how things are going...I haven't posted in awhile!

-I saw my CF doc yesterday for a check-up and my lung function (PFT) is still pretty low for me. I haven't quite bounced back since being sick a few months ago. My normal healthy lung function numbers are in the 70% range but since August I've been breathing at in the 60's range of lung function...so, thats a little frustrating as I haven't felt 100% myself in awhile.
-I may have a little lung infection still going which could explain me coughing out blood a few weeks ago. The infection isn't too big yet so hopefully I can
-I met with my ENT and scheduled sinus surgery for December. I am glad to do this since my sinuses have been bothering me a ton. Plus, it's very possible that the infection harbored up in my sinuses could be a cause to lowered lung function as the infection can drip down into my lungs...so hopefully when that's taken care of, I'll start to bounce back.

Other than that, things are good. I'm doing my best to stay healthy as the cold/flu season kicks in. Praise God, I've avoided such things so far. If you think of it, keep me in your prayers through the winter...:).
~Em

Weekly Thanks

2008-11-02T17:39:00.001-08:00

This week, I am thankful for...
1. The change in weather! We had some rain and finally some cooler temperatures...dare I say, it actually feels like fall??

2. A fabulous evening out with my friend Kim as we drove to San Diego, heard some new music by Matt Nathanson... LOVED IT! Check it out on itunes!!

3. Waking up on Saturday to surf, followed by breakfast with a friend and then coming home to take a wonderful nap on Saturday while I heard the rain trickle outside my window...can't beat a good nap :)

4. The reminder at church today that God can use our weaknesses and ordinary aspects of our lives for His plans...I am encouraged because it reminds me that God's plans are bigger than mine ever could be.
~Em

A Yummy Fall Treat

2008-10-31T12:46:00.000-07:00

I tried making homemade Caramel Corn yesterday :). It was fun to make and it turned out great...yum :)
~Em

The Worst-Case Scenario Survival Game

2008-10-26T22:11:00.000-07:00

If anyone is looking for a game sure to bring tons of laughter yet also practical tips that may someday save your life...check this game out. Guaranteed to not only share "useful" information such as "How to Survive a Plummeting Elevator", "How to Wrestle an Alligator", and, "How to Detect the West-Nile Virus", but guaranteed laughter as you learn such practical skills haha...hilarious fun :)....
I'm SO glad I learned all I did while playing this Saturday night, and I think the laughter was good for me too :)

~Em

Weekly Thanks

2008-10-26T21:57:00.000-07:00

This weekend at church I was challenged deeply to remember giving thanks in all things, no matter where I am in life...sometimes that can be difficult.
So, I thought it could be fun to post some things I'm thankful for each week. I hope this can be a weekly thing that I not only do for fun, but also to reflect and share my thanks and my favorite parts of the week that I am grateful for. (This inspiration also came from a friend's blog who does something similar in posting her favorite weekly moments- thanks, Traci :)

This week, I am thankful for...in no particular order...

1. My family, their support and care for me.
2. The gift of life
3. My new life group at Rock Harbor Church
4. Good cooking and good conversation with dear friends, Brian and Danielle Lacey
5. Surfing and watching the fog lift from the beach this morning, so beautiful!
6. Quality time spent with Kim- laughing, eating, playing Candyland, being welcome in her warm home. Her friendship is a blessing.

~Em

The Spider Who Never Gave Up

2008-10-15T22:26:00.001-07:00

A student in my mom's class has a cousin with CF- his name is Travis and lives in Ohio (not far from my family). This amazing kid wrote a childrens book at 8 years old called "The Spider Who Never Gave Up" which is inspired by his goal to never give up the fight against CF!
This book is a way for Travis to encourage other kids to never give up on their dreams, no matter how bad life gets...Not to mention, he's giving some of his proceeds to the CF Foundation, Cancer Society , and Make-A-Wish Foundation!
This guy deserves a big shout-out from one CFer to another...you rock Travis :)
Check out Travis' Website & Story: http://sparkeythespider.com/index.html

~Em

24-hours: Blood Free!

2008-10-12T18:10:00.000-07:00

That's right, to add an update to my last post, i've been 24-hours without coughing up blood, looks like it's all back to normal! I'll be chatting with my docs tomorrow to see what else I can do, but thankfully it looks like my lungs clotted well.

Thank you for the prayers, friends...Happy Sunday, God is SO good!
~Em

Not like I had planned

2008-10-10T23:38:00.000-07:00

I haven't updated my blog in over a week and unfortunately it's not with fun stuff (though I did have a fabulous week!)
Today was not like I had planned...which comes with the territory of having CF. I spent the afternoon in the ER due to major hemoptysis. It started in the afternoon as I was just arriving to go to a meeting at work I heard the gurgling in my chest and sure enough, I coughed up full blood. Not good at all, so I went straight home.
A little about hemoptysis, then back to my story...hemoptysis can be very serious for CF. Sometimes it can happen after a lot of activity or coughing very hard, and sometimes it happens due to an infection and irritation in the lungs. If the blood doesn't stop, it can be very dangerous and is something that must be watched very carefully because it has the potential to get out of control.
So, because I didn't know if it would clot quickly and after talking with my doctor at USC, they advised me to go straight to the nearest ER just in case it didn't stop, that way I would get good care just in case it didn't clot. My wonderful mom and dad were with me to keep me company and endure the endless waiting and after spending the afternoon there, finally the blood began to lessen and they sent me home about 6:30 tonight, praise God!

I ask for your prayers this weekend as I will be resting and taking it easy- nothing too strenuous for 24 hours to allow the clots to heal (bummer, that means I can't surf as I had planned tomorrow...I was really looking forward to it). Pray my body can heal and the bleeding will go away- I'm praying this is not a result from an infection so I hope it's not too serious, but just irritation (maybe from the fires/ashes in the air, or from working out today?).

Thanks and I'm gonna go get some sleep now. Thank you Lord for watching over me, and letting me come home to sleep in my own bed tonight, I am so grateful.
~Em

Dancing with the Stars!

2008-10-01T08:54:00.000-07:00

Yesterday, I got to go to Dancing with the Stars, Results show and see everything happen, live!It was awesome to see the dancers up close, the special-guest performer Jessica Simpson sing, and just be on the set and see the behind-the-scenes work, it was a blast. We even got front/center seats to see all the action, right across from the judges...maybe you saw me in the camera, here and there! I don't have any pics, because they don't allow cameras...but it was pretty fun :).
Thanks Jill for sharing your tickets!
~Em

Julia and Chris are Here!

2008-09-26T16:53:00.000-07:00

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 :)
~Em

Health/Dr's Visit Update

2008-09-26T16:41:00.000-07:00

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!!

~Em

Goodbye Summer, Hello Fall

2008-09-22T22:52:00.000-07:00

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...
~Em

Loving Life...

2008-09-22T08:26:00.001-07:00

I've been a little behind in my blogging as I was getting my feet back on the ground last week...so 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

~Em

Volcom Tour

2008-09-15T21:39:00.000-07:00

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 CF...here 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!
~Em

Back to Work

2008-09-15T13:32:00.000-07:00

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!
~Em

Done!!

2008-09-12T21:40:00.001-07:00

That's right...as 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.
~Em

Patriot Day

2008-09-11T08:44:00.000-07:00

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

Living A Double Life

2008-09-09T23:37:00.000-07:00

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 thought...my 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.
~Em

Hollywood Bowl

2008-09-08T10:10:00.001-07:00

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 scores...it 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!
~Em

Psalm 46:10-11

2008-09-07T18:05:00.000-07:00

"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."

Update: 2 Weeks

2008-09-06T16:05:00.000-07:00

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!

So...how'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 support...it'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,
~Em

Check-Up Today

2008-09-05T08:31:00.001-07:00

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 :)
~Em

Way to Go, CFF!

2008-09-04T12:18:00.000-07:00

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.
~Em

A Restful Weekend

2008-09-03T12:17:00.000-07:00

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!
~Em

I'm HOME!!

2008-08-29T17:58:00.001-07:00

That's right...after 7 days in the hospital, I was given the 'yes' to go home today! I am so happy to be here, I just arrived and it feels great to be out of the hospital... I can't wait to sleep in my own bed tonight :)

How am I feeling, you may ask? Well, I am definitely feeling tons better than when I was admitted last Friday... However, I'm not fully better and I have another few weeks ahead of infection fighting and strength-gaining recovery to do. My lung function is still down, and my breathing is still short off and on. I am digesting my food better, praise the Lord, and I am no longer coughing out blood (sorry if that is too graphic for ya'll). So since I started to make some progress, and the docs know that I will take very good care of myself at home...they let me come home to enjoy the comforts of home plus home IV medications and treatments.

What's the plan? I will spend the next week completely at home, I've been instructed not to work or expend too much energy (I promised my doc as he graciously wrote the orders for me to leave, haha). The goal is to take care of myself as they did for me in the hospital which means I will still work do 4-5 breathing treatments a day to keep clearing my lungs, 3 antibiotics (2 through an IV) and maintain little bits of exercise and eating well to keep my body strong (that won't be hard because the food at home is a million times better ;).

Some thoughts/prayers for the next few weeks...
I wish that I could say that I'm back to normal, 100%, but that's not the case and it's going to take some patience as my body continues to fight this infection. I ask for your prayers once again, as this is almost a more difficult battle being more on my own. Being in the hospital is hard, but is a huge help because a whole staff is there to take care of me and help me when I'm not feeling well. Being home, I am more independent and it takes energy to remember my meds every 6 hours, do my breathing treatments every 4 and somehow fit the eating and sleeping in :). I've done this before, and my parents are awesome, and will be graciously helping me...but I ask for your prayers to pray that my body will heal and continue to gain strength as the infection continues to go away...I've made LOTS of progress so here's to another great week of getting me back on my feet.

You are loved...yes, YOU!
I don't know how to thank EACH of you for the incredible support you gave me. As I lied in bed each night in the hospital it could have been so easy to feel alone, the hospital is a difficult place...But each time I felt that, I knew that there was love and support pouring out from friends and family, and I knew that I had a community of people and my loving God to walk through this beside me. Living a life with CF is not easy, but having people to "live" it with you makes a world of difference. Thank you all for being with me when I am full of energy and feeling great, and when i'm battling the reality and severities that CF brings, I am incredibly lucky and joyful to have each of you a part of my life :).

I'll keep updating the blog as I progress, but for now, I am just glad to be home to eat dinner that my wonderful mom cooked! Hope you all have a WONDERFUL Labor Day weekend...leave a comment to tell me the fun things you did, if you want...i'll post here and there :)
Thank you for being with me throughout the week at the hospital, I am so blessed.
~Em

Thursday...a good day

2008-08-28T23:55:00.000-07:00

I thought I might be going home today, but alas it was not meant to be. I enjoyed my day today, the best part of the day was that I got to sleep a full 8 hours last night without being interrupted!! That's pretty rare in the hospital, but being on this new floor, the nurses are used to have CF patients that are for the most part, stable. Therefore they don't have to check vital signs (blood pressure, temp etc) every 4 hours and they let us sleep!! I was shocked when I woke up at 8:30 this morning :)...The day started out great!

I was given great care and being on this new floor and in a new room is a world of difference :). I had a great time hanging out with my mom and then later with Brynne and Steve, good friends of mine. I am so glad to have had company to spend some time with...

I'm off to bed, I'm having a little difficulty breathing so if you read this, I ask for your prayers that it will end quickly and i'll go to sleep shortly...And I've been told that tomorrow may be the day I get to go home :)...Let's hope so!!
Love to all-
~Em