If you think of it today, please pray for me. I'll be visiting the dr. today at USC for a few reasons. I haven't been feeling well and have been very congested for the last few weeks- I had thought it was from traveling and being tired, but it hasn't seemed to go away...Also, I am in need of some new enzymes to digest my food.
So, if you think of it, I'll be going this afternoon- I'd love your prayers for me and for the doctors. That together we can make good decisions for my health.
Its been tough knowing that I need to go to the doctor after such an amazing summer. It's almost like I don't want it to end, i've been so excited to be involved in the CF community, involved in Pipeline to a cure, and surfing a ton. Even though when I am doing all those things, CF is directly in my face because i'm talking about it and being an ambassador for the CF community, it became so surreal that it's easy for me to keep going and think everything is ok...I've taken great care of myself this summer but, the reality of CF is, no matter how much I take care of myself, my body does not always cooperate. So, I am finally taking the step to be looked at by my doctors today and hopefully my lungs are not too bad and there are some good antibiotic solutions!
Thanks for the prayers, I appreciate it- friends!
~Em
Monday, August 18, 2008
Friday, August 15, 2008
Summer Pics
Since it's a hot day outside, I thought it would be a great afternoon to enjoy the AC in my house and post some pics from this summer :). I've been slacking on my picture posting, so today is a good day to catch up!
The first set, are some pictures from a Surf Day for Cystic Fibrosis, hosted by Quiksilver...and the second set are some pics from my wonderful family vacation in Ocracoke, NC...
Enjoy :)
~Em
Talking with Strider, a long-time Quiksilver rider...
Sporting the Quiksilver gear...
Getting the CF kids ready to get in the water, thanks Robbie for your hard work!
The family around the dinner table...yum, looks like another great meal :)
Mariel and I on the ferry ride to Ocracoke Island...
Kim, Mariel and I enjoying a day out on the beach...
The first set, are some pictures from a Surf Day for Cystic Fibrosis, hosted by Quiksilver...and the second set are some pics from my wonderful family vacation in Ocracoke, NC...
Enjoy :)
~Em
Talking with Strider, a long-time Quiksilver rider...
Sporting the Quiksilver gear...
Getting the CF kids ready to get in the water, thanks Robbie for your hard work!
The family around the dinner table...yum, looks like another great meal :)
Mariel and I on the ferry ride to Ocracoke Island...
Kim, Mariel and I enjoying a day out on the beach...
Happy 30th Anniversary, Mom and Dad!
August 13th is my parent's 30th Wedding Anniversary! So they are celebrating 30 years this week- wow! (I know i'm a few days late in posting)...
They have had 30 wonderful years together, and I wish them another wonderful 30. They have been incredible parents- full of love, support and encouragement for my sister and I and have worked hard to have good careers and raise our family well at the same time. I only hope that someday, I will be as blessed as they are to celebrate 30 years with someone in my life. I love my parents and I wish them an incredible next 30 years :).
I love you, Mom and Dad!
~Em
This is a picture of us at Lucille's BBQ, celebrating as I finally paid off my college loans! Thank you Mom and Dad for always being supportive in everything I do :)
They have had 30 wonderful years together, and I wish them another wonderful 30. They have been incredible parents- full of love, support and encouragement for my sister and I and have worked hard to have good careers and raise our family well at the same time. I only hope that someday, I will be as blessed as they are to celebrate 30 years with someone in my life. I love my parents and I wish them an incredible next 30 years :).
I love you, Mom and Dad!
~Em
This is a picture of us at Lucille's BBQ, celebrating as I finally paid off my college loans! Thank you Mom and Dad for always being supportive in everything I do :)
Thursday, August 14, 2008
Olympic Fever!
Is anyone else just LOVING the Olympics this year? I know I am! I usually crash by 11pm but since the Olympics have been on, i've found myself staying up till I just can't keep my eyes open! Gymnastics, swimming, diving, even beach volleyball (which i've never really watched)...it's addicting...haha.
Anyone else doing the same? :)
Go USA!
~Em
Anyone else doing the same? :)
Go USA!
~Em
Tuesday, August 12, 2008
Thank you, Volcom!
Last Saturday, the Mauli-Ola Foundation put on a Surf Experience Day for Cystic Fibrosis! Mauli-Ola is a great organization, it means "Breath of Life" in Hawaiian, and their goal is to raise awareness for CF and help get the surf industry to partner in teachingkids how to surf. They do so in a very safe way so kids don't have contact and CF contact rules are adhered...and the kids have a BLAST!
Last Saturday, they partnered with Volcom, and Newport Surf Camp and held a morning for kids with CF to learn to surf! It was a BLAST!! Volcom brought a ton of shirts and gear for the kids, and brought about 10 of their team riders to help teach the kids- it was super fun!
Check out the video and pics they posted on their website!!
Thank you, Mauli-Ola, Newport Surf Camp and Volcom!!
~Em
Last Saturday, they partnered with Volcom, and Newport Surf Camp and held a morning for kids with CF to learn to surf! It was a BLAST!! Volcom brought a ton of shirts and gear for the kids, and brought about 10 of their team riders to help teach the kids- it was super fun!
Check out the video and pics they posted on their website!!
Thank you, Mauli-Ola, Newport Surf Camp and Volcom!!
~Em
Friday, August 8, 2008
Book Reccomendation
While on vacation the last two weeks, I had picked up a book called "The Power of Two; A Twin Triumph over Cystic Fibrosis" written by 2 fellow CFers that I knew many years ago. They are twins, living with CF, and I knew them as a child when we all used to go to CF Camp together! We've since lost touch, however just this year they published a memoir of their lives, growing up with CF as kids and now adults!
They are incredible women and have been through a ton. Their book is very inetense, leaves nothing out, and is really accurate (I think) to what life with CF is like. They are very real in describing what many CFers really experience emotionally, physically, mentally etc...I was inspired by all they have gone through, was given tons of hope and joy in reading it and learned a lot about lung transplants as well. I felt like this book very accurately portrayed many of my life experiences as well, and throughout reading it I found myself saying "I've felt that too"...
Anyways, if you are looking for a great book that describes the medical aspect of CF, AND what life is really like- I highly recommend it...Be ready for an awesome story by two awesome girls with a huge excitement for life, may God continue to bless them and keep them healthy.
This is the link to the book, written by Isabel and Ana Stenzel.
http://www.stenzeltwins.com/index.html
~Em
Thursday, August 7, 2008
Post Pipeline Press
Since the event, we have continued to see some press come out!
Its been pretty awesome to see it all happen...and see CF really get some awareness :)
Check out this link to see a web-video that the local orange county newspaper (OC Register) made- it has clips from that nights event:
http://link.brightcove.com/services/link/bcpid1485317738/bclid1485323745/bctid1690990226
Next is an article that ran in the OC Register about Pipeline, on July 19th (I couldn't figure out the link, so I copied it below)...
~Em
------------
Cystic fibrosis patients find relief in the sea
Surfing event today in Huntington will put participants in what’s been found to be a natural aid: salt water.
By CHRIS DAINES THE ORANGE COUNTY REGISTER
Through surfing, doctors in Australia have discovered one of the most effective treatments available to cystic-fibrosis patients – salt water.
“It’s not a cure, but it is the most effective therapy that CF sufferers have ever had,” said Paul Motenko from the Cystic Fibrosis Foundation.
Cystic fibrosis, a genetically inherited disease, affects organs in the human body by interrupting the ability to carry salt and water to and from cells. This causes a buildup of mucus, eventually creating scar tissue that damages organs and limits sufferers’ ability to breathe.
Doctors observed that patients with the disease who surfed were healthier than those who did not. Clinical studies, completed with support from the foundation, proved that surfing indeed helped patients. Saltwater treatments are now regularly given to patients around the world.
Surfing legend and Dana Point local Mickey Muñoz found out about the breakthrough and felt inspired to help.
“Surfing is the fountain of youth. I built a lot of boats and boards in my days and inhaled a lot of toxic fumes, so I could empathize on that level,” Muñoz said.
The foundation introduced Muñoz to cystic fibrosis patient Emily Haager, 24, of Diamond Bar. The disease lessens Haager’s ability to breathe, leaving her with only 65 percent of typical lung capacity compared with other adults her age. She has been surfing regularly for about a year and was very excited to get the chance to surf with Muñoz.
“When I’m in the water my lungs clear out, I breathe a lot deeper and I feel great afterwards,” Haager said. “Mickey has years of knowledge and wisdom. I love hearing about his surfing adventures.”
Muñoz and surfers Laird Hamilton, Jericho Poppler and Dave Kalama are all backing the foundation’s inaugural Pipeline to a Cure fundraiser being held today at the Hyatt Regency Huntington Beach.
“This is the first time that participation in a sport has been found to be beneficial to a fatal genetic disease. Once surfers understood the sport they loved – along with its healing and spiritual elements – also helped to relieve CF, they rallied behind us like you wouldn’t believe,” Motenko said.
The foundation’s event is raising money to aid in the funding of research, treatment and an eventual cure.
“This seems like such a natural cause for surfers to get behind,” Muñoz said.
About cystic fibrosis
Every year, 1,000 new cases are diagnosed. In 2006, the median life span for sufferers was 37. It clogs lungs and leads to lung infections. It stops enzymes from helping the body digest correctly. Source: Cystic Fibrosis Foundation
Pipeline to a Cure
What: Inaugural fundraiser sponsored by the Cystic Fibrosis Foundation and PacSun When: 6 p.m. today Where: Hyatt Regency Huntington Beach Events: Silent auction, dinner, dancing, live auction and an acoustic performance by Social Distortion
Tickets and information: pipelinetoacure.com
CONTACT THE WRITER:
9 1 9-492-5 1 35 or cdaines@ocregsiter.com
Its been pretty awesome to see it all happen...and see CF really get some awareness :)
Check out this link to see a web-video that the local orange county newspaper (OC Register) made- it has clips from that nights event:
http://link.brightcove.com/
Next is an article that ran in the OC Register about Pipeline, on July 19th (I couldn't figure out the link, so I copied it below)...
~Em
------------
Cystic fibrosis patients find relief in the sea
Surfing event today in Huntington will put participants in what’s been found to be a natural aid: salt water.
By CHRIS DAINES THE ORANGE COUNTY REGISTER
Through surfing, doctors in Australia have discovered one of the most effective treatments available to cystic-fibrosis patients – salt water.
“It’s not a cure, but it is the most effective therapy that CF sufferers have ever had,” said Paul Motenko from the Cystic Fibrosis Foundation.
Cystic fibrosis, a genetically inherited disease, affects organs in the human body by interrupting the ability to carry salt and water to and from cells. This causes a buildup of mucus, eventually creating scar tissue that damages organs and limits sufferers’ ability to breathe.
Doctors observed that patients with the disease who surfed were healthier than those who did not. Clinical studies, completed with support from the foundation, proved that surfing indeed helped patients. Saltwater treatments are now regularly given to patients around the world.
Surfing legend and Dana Point local Mickey Muñoz found out about the breakthrough and felt inspired to help.
“Surfing is the fountain of youth. I built a lot of boats and boards in my days and inhaled a lot of toxic fumes, so I could empathize on that level,” Muñoz said.
The foundation introduced Muñoz to cystic fibrosis patient Emily Haager, 24, of Diamond Bar. The disease lessens Haager’s ability to breathe, leaving her with only 65 percent of typical lung capacity compared with other adults her age. She has been surfing regularly for about a year and was very excited to get the chance to surf with Muñoz.
“When I’m in the water my lungs clear out, I breathe a lot deeper and I feel great afterwards,” Haager said. “Mickey has years of knowledge and wisdom. I love hearing about his surfing adventures.”
Muñoz and surfers Laird Hamilton, Jericho Poppler and Dave Kalama are all backing the foundation’s inaugural Pipeline to a Cure fundraiser being held today at the Hyatt Regency Huntington Beach.
“This is the first time that participation in a sport has been found to be beneficial to a fatal genetic disease. Once surfers understood the sport they loved – along with its healing and spiritual elements – also helped to relieve CF, they rallied behind us like you wouldn’t believe,” Motenko said.
The foundation’s event is raising money to aid in the funding of research, treatment and an eventual cure.
“This seems like such a natural cause for surfers to get behind,” Muñoz said.
About cystic fibrosis
Every year, 1,000 new cases are diagnosed. In 2006, the median life span for sufferers was 37. It clogs lungs and leads to lung infections. It stops enzymes from helping the body digest correctly. Source: Cystic Fibrosis Foundation
Pipeline to a Cure
What: Inaugural fundraiser sponsored by the Cystic Fibrosis Foundation and PacSun When: 6 p.m. today Where: Hyatt Regency Huntington Beach Events: Silent auction, dinner, dancing, live auction and an acoustic performance by Social Distortion
Tickets and information: pipelinetoacure.com
CONTACT THE WRITER:
9 1 9-492-5 1 35 or cdaines@ocregsiter.com
Tuesday, August 5, 2008
The Beginning of "Pipeline"
I've been blogging a lot about Pipeline to a Cure, a big fundraising event and campaign to connect the surfing community and Cystic Fibrosis with a goal to raise money and awareness to find a cure for Cystic Fibrosis.
Now that our innaugural event is over, a few weeks ago (July 19th), I thought I'd blog the whole story now that I have some time...A lot of people have asked me, how did I get involved with this campaign? How did it all get started? So...here's the beginning story...
I began surfing after a long bout in the hospital in 2006. I was in the hospital when, my doctors asked me to try a new treatment that had been released called "Hypertonic Saline", a very intense concentrated dose of salt-water, created to mimic the ocean. This was created because they had found surfers with CF, in Australia, were significantly higher in their lung function due to the salt water hydrating the lungs (see this article for more information).
So, I tried the treatment, and began using it because it helped me to cough out mucus easier, and so I then began surfing a few months after my hospital stay...I've been hooked ever since :).
As surfing (and Hypertonic saline) became more of my routine, the CF Foundation office in Southern California and other individuals involved in the surf community and with CF began dreaming up the idea to get the two worlds connected-- after all, surfers spend 90% of their time in the salt water that is hydrating CF lungs! So, Pipeline to a Cure was born and the date was set!
All they needed, was a person to help connect and share a story with the surfing community to help them understand CF...that's where I came in :).
See this Youtube Video to see the beginning of my involvement (thanks to Jordan, and Casey for their amazing work in this video coming together, and helping me to get out of my box to do it!)... As I did this video, it all snowballed from there, and God began to grow me as I became more involved and began to realize God's call for me to share my heart and my story with the surf community and CF community...This is the first step of faith for me, and I then saw God opening doors and challenging me to use my life with CF for Him...
Emily's Story on Youtube
~Em
Now that our innaugural event is over, a few weeks ago (July 19th), I thought I'd blog the whole story now that I have some time...A lot of people have asked me, how did I get involved with this campaign? How did it all get started? So...here's the beginning story...
I began surfing after a long bout in the hospital in 2006. I was in the hospital when, my doctors asked me to try a new treatment that had been released called "Hypertonic Saline", a very intense concentrated dose of salt-water, created to mimic the ocean. This was created because they had found surfers with CF, in Australia, were significantly higher in their lung function due to the salt water hydrating the lungs (see this article for more information).
So, I tried the treatment, and began using it because it helped me to cough out mucus easier, and so I then began surfing a few months after my hospital stay...I've been hooked ever since :).
As surfing (and Hypertonic saline) became more of my routine, the CF Foundation office in Southern California and other individuals involved in the surf community and with CF began dreaming up the idea to get the two worlds connected-- after all, surfers spend 90% of their time in the salt water that is hydrating CF lungs! So, Pipeline to a Cure was born and the date was set!
All they needed, was a person to help connect and share a story with the surfing community to help them understand CF...that's where I came in :).
See this Youtube Video to see the beginning of my involvement (thanks to Jordan, and Casey for their amazing work in this video coming together, and helping me to get out of my box to do it!)... As I did this video, it all snowballed from there, and God began to grow me as I became more involved and began to realize God's call for me to share my heart and my story with the surf community and CF community...This is the first step of faith for me, and I then saw God opening doors and challenging me to use my life with CF for Him...
Emily's Story on Youtube
~Em
Monday, August 4, 2008
Glad to be home :)
I finally made it back home, to the earthquake-shaken california :).
After 2 weeks away, and over 24 hours of traveling to get home (American Airlines is not my friend), I finally arrived home this morning and am SO glad to be here!
Being away was awesome- I had some great time to really reflect on life, be with God, and spend some very quality time with my family from all over the US. However, I wasn't feeling too great physically and our bummer-trip home with cancelled flights and staying the night in Dallas, TX was not the best for me. I'm gonna need some good recoup time just from my vacation, haha. I ask for your prayers for my body- I'm tired, and my breathing hasn't been the best the last week or so...thanks.
Anyways, good to be home. I look forward to posting more stories of my vacation, pics, and many more stories and pics from the Pipeline to a Cure event that happened 2 weeks ago. God is really changing me, and I believe, leading me to use my life even more for Him. I look forward to sharing on this blog, all that God is doing and sharing all the fun that's happened in the last few weeks!
More later :)
~Em
After 2 weeks away, and over 24 hours of traveling to get home (American Airlines is not my friend), I finally arrived home this morning and am SO glad to be here!
Being away was awesome- I had some great time to really reflect on life, be with God, and spend some very quality time with my family from all over the US. However, I wasn't feeling too great physically and our bummer-trip home with cancelled flights and staying the night in Dallas, TX was not the best for me. I'm gonna need some good recoup time just from my vacation, haha. I ask for your prayers for my body- I'm tired, and my breathing hasn't been the best the last week or so...thanks.
Anyways, good to be home. I look forward to posting more stories of my vacation, pics, and many more stories and pics from the Pipeline to a Cure event that happened 2 weeks ago. God is really changing me, and I believe, leading me to use my life even more for Him. I look forward to sharing on this blog, all that God is doing and sharing all the fun that's happened in the last few weeks!
More later :)
~Em
Saturday, August 2, 2008
Real Thunderstorms!!
That's right, one of my favorite things when visiting on the East Coast is the awesome house-shaking thunderstorms that happen :).
We had a big one, Thursday night- major thunder, power outages, and some pretty cool lightning that lit up the room when it cracked across the sky!
I got a few pics before the rain came pouring down...this just doesn't happen very often in Cali, so I gotta take it all in while I can!!
What did Elisabeth and I do to weather the storm? Hunker down with a laptop and a chick flick while we watched the lightning across the sky :). Good times!
~Em
We had a big one, Thursday night- major thunder, power outages, and some pretty cool lightning that lit up the room when it cracked across the sky!
I got a few pics before the rain came pouring down...this just doesn't happen very often in Cali, so I gotta take it all in while I can!!
What did Elisabeth and I do to weather the storm? Hunker down with a laptop and a chick flick while we watched the lightning across the sky :). Good times!
~Em
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