Sunday, May 24, 2009

A Weekend in Santa Cruz!

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.
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 :)

Wednesday, May 13, 2009

Home is where my comfortable bed is

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+ 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 :)

Sunday, May 10, 2009

Loving My Mom

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 :)

Almost 3 weeks!

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! 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 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 :)

Tuesday, May 5, 2009

Team Emily is AMAZING!!

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!

Sunday, May 3, 2009

Psalm 40:1-3

  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

Saturday, May 2, 2009

Team Emily!!

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.


Friday, May 1, 2009

Random Musings from USC...

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!