Friday, December 26, 2008
Wednesday, December 17, 2008
Here are a few pics of the contests, and awesome waves at Pipeline and fun people I met :)
Friday, December 12, 2008
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 :).
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)...
Here are a few pics (I made them smaller so I could fit more in...there were so many to pick from!)
Tuesday, December 9, 2008
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!
Tuesday, December 2, 2008
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.
Tuesday, November 18, 2008
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.
Sunday, November 16, 2008
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.
Tuesday, November 11, 2008
-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...:).
Sunday, November 2, 2008
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.
Friday, October 31, 2008
Sunday, October 26, 2008
I'm SO glad I learned all I did while playing this Saturday night, and I think the laughter was good for me too :)
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.
Wednesday, October 15, 2008
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
Sunday, October 12, 2008
Thank you for the prayers, friends...Happy Sunday, God is SO good!
Friday, October 10, 2008
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.
Wednesday, October 1, 2008
Thanks Jill for sharing your tickets!
Friday, September 26, 2008
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 :)
I did find out a few not-so-exciting things (not terrible)
1. I'll be doing sinus surgery in about a month (whenever I get the approval from my insurance). Many CFers have sinus problems as well, basically having CF in the sinuses causing a ton of infection, blockage and polyps. So to alleviate symptoms and clear out infection (thus hopefully preventing the infection from traveling down into the lungs), I'll be having surgery in a month or so, it's a routine thing and it should be good for me. Not sure what the surgery will entail or when, so i'll keep the blog updated when it gets closer.
2. I now have "Osteopenia", early Osteoperosis. Because nutrients don't always abosrb into the body properly in CF, my bones are weaker than the average person. So, i'll be needing to take more calcium and do more weight-bearing exercises, not the end of the world... i'm happy to comply and get stronger :)
Other than that, the report was fabulous! I'm doing great and have recovered well after being in the hospital! Thanks USC for taking great care of me!!
Monday, September 22, 2008
"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...
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 :)
Monday, September 15, 2008
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!
I work at a community college as a sign language interpreter and because I was sick and missed the first 3 weeks of the semester, I had a lot of little errands to run on campus to get myself caught up. For example, when I arrived on campus I completely forgot I need a new parking permit...haha, so I hiked myself to the office and got one. So many little details that I forgot while being away for 3 weeks :).
Anyways, it was a good first day back...I'm exhausted and am going to take a nap now. It feels so freeing to be back and fun to be doing things outside of my house again :). As these IV meds leave my body I'm feeling more and more like me!
Friday, September 12, 2008
Update: I went to the dr this week and my pulmonary function numbers were not as high as expected. But, I am finishing the meds today to give my body a break from the meds (and to assure that other organs don't start malfunctioning). I am hoping to re-gain strength and stamina on my own, and I'll be getting back to normal life/work etc. starting Monday!
What's next? It should take a few days to get these meds out of my system, they make me feel pretty crummy due to the side effects, I just don't feel like myself. Please be praying that specifically in the next few weeks, I can get my stamina back and hopefully get my lung function numbers up to normal. Also, pray that these meds will clear out of my system so I can have an appetite agian and feel more like myself. I'll be headed to the dr. for a check-up in 2 weeks.
As of now, I'm going to enjoy a good night's rest and hopefully hit the beach this weekend!! Oh how I've missed it :).
Thanks to all for your support. Knowing that this is a regular part of life with CF, I am so blessed and grateful to have your prayers and love to get me through this. I am incredibly thankful for each of you, tonight.
Praise the Lord for His hand on me through these last few weeks :). God is so good.
Thursday, September 11, 2008
Tuesday, September 9, 2008
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.
Monday, September 8, 2008
Sunday, September 7, 2008
Saturday, September 6, 2008
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,
Friday, September 5, 2008
It will be good to see my docs and chat about how I'm doing...I'll post an update when I get back :)
Thursday, September 4, 2008
Check it out here!
Thank you CFF for helping to extend my life and the lives of so many with CF...because of their hard work in funding research, there is so much hope for the future. Thank you to all at CFF for your hard work, I am forever grateful.
Wednesday, September 3, 2008
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!
Friday, August 29, 2008
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.
Thursday, August 28, 2008
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-
Wednesday, August 27, 2008
I'm also starting to feel better, for the first time i'm taking deeper breaths and getting more oxygen- so we'll see if this helps me get home soon! I'll keep my blog updated.
Here's to some good sleep tonight!
It's been a busy day today, I've met with the Rheumatologist to assess my CF-related Arthritis, gotten more x-rays, and I should be meeting with the ENT to assess my sinus issues too. I'm so glad to be getting all this done and meeting the specialists I need to meet before going home...It's a few less things I need to do when I'm back into normal life and getting all the tests they want done now, makes it so much easier. I might as well get everything done while they've got me in one place!
I'm going to attempt to take a nap now, but we'll see how that goes...haha :)
Happy Wednesday, friends!
Tuesday, August 26, 2008
Health Update: I have been here for 5 days and this is about when the medications should start to work. I am not feeling any better, really, I am still pretty short of breath, coughing a ton and mostly exhausted because my body is working so hard to fight this infection. I am also, unfortunately, having a lot of digestive problems and my food hasn't exactly been feeling too good in the tummy (enough said). All that is to say, I still have a few weeks ahead of IV meds to kick this infection and get back to my normal stamina, breathing, and living an active life. But, I think I'm starting to see little improvements along the way and being here has really helped me to rest as I allow others to take care of me.
Some Good News: If I start to make some improvements in the next few days and I will do some more tests to make sure my stomach and digestion are all working ok, my doctor is willing to let me go home and continue treatment there, maybe by the end of the week :)...yay! We will see, I will let you all know.
Prayer/Support: For now, I ask for prayers that my body will start to fight the infection with the help of the meds, that I can get lots of rest. Pray that the meds will work hard to kill the bacteria, and that I can have minimal side effects to them. Also, pray the issues with my stomach will get worked out, it's no fun :(.
After seeing my docs today, I feel encouraged that being here to immerse myself in health care for my body is really helping! This hospital and my doctors are incredible, they have done a great job taking care of me and still trying allowing me to live a semi-normal life (going outside, walking, little exercising, eating, resting). I am so encouraged as dear friends and family have surrounded me with love, phone calls (even if I don't return them know you are loved), emails, and prayer...My spirits are up as I know I'm not fighting this battle alone. Both God and people are walking with me in this, I feel so overwhelmed with family of support around me, I cannot thank everyone enough.
Love to all,
ok...so granted this isn't the most flattering picture, but I wanted to say hello with my face, not just words on a blog :)
Please pray this afternoon for me, and for them. Pray the docs can have wisdom as to how to treat some of my nagging symptoms of this infection (i'll post about how i'm doing next), and pray for me that I can be open and honest with them and get to know them. This team will be treating me for a long time in the future, so I am glad to get to know them and for them to get to know me as their patient :).
Thanks- i'll update later about how my day goes :)
Monday, August 25, 2008
-A great, long nap this morning
-Emails of encouragement from friends
-Good medical care and nurses
-Visits from good friends full of laughter and smiles :)
-Walking around in the sunshine with my dad
-Watching a little Gilmore Girls to end my night
At the end of the day I am reminded that even through times in the hospital, frustration when I can't breathe, and exhaustion from just sitting around, I see that I have so much to be thankful for :). For that, I can't complain- I have an incredible life full of so much I could have never asked for- and though i'm taking a little reprieve from being social and enjoying the things I normally do, while I let my body get back to normal, I am just feeling thankful tonight, of the gifts that God has given me....
So just now, at 10am I saw and heard a helicopter coming in and landing above me. I have no idea who or what is in that helicopter, but I feel called to pray for the patients all around the world who are waiting for transplants for any organ, or receiving transplants either at this hospital or anywhere else. What a miracle it is to have a transplant and I can't imagine the emotions involved in both the patient and the donor's family. My prayers and heart are with them all, right now :).
Sunday, August 24, 2008
I've had excellent care from nurses, and staff, and I feel like they really consider the needs of a CF patient here. I am starting to feel more comfortable, and I am also really glad my doctors are taking the time to get to know me as I'm here- I feel so blessed to have good care.
As I get used to it here, I've noticed a few differences that I enjoy here (not that I didn't have good care at my old hospital, but being here at an adult clinic for CF really makes a big difference). One of the biggest differences here at USC, is that I get freedom to live a more 'normal' life. I am, of course, doing long breathing treatments to clear my lungs, and i'm on 3 antibiotics and a constant IV, but despite that- they give me some freedom to walk around and go outside and enjoy the sunshine as long as CF-contact precautions are taken (meaning I wear a mask and gloves)! I was SO excited to go outside today :). At my previous hospital- they were more strict because they didn't treat CF on a regular basis. There, I was usually confined to my room and was barely given permission to go walk in the hall...
I'm glad that here at USC I don't have to wait 7 days to feel the warmth of the sun :).
Saturday, August 23, 2008
I am glad to be in a place that is much quieter and much more calm- i've had a pretty relaxing day...I was even allowed to go outside and enjoy some fresh air! Yay!
I'll have more to post tomorrow about how i'm doing and how i'm feeling (physically and emotionally), but for now, I'm pretty wiped out after my lack-of-sleep last night and i'm pretty dazed... so i'm headed to sleep :)
I did survive the ICU for the night and things went well...they had me pretty busy with CT scans, blood draws, breathing treatments, x-rays, and then they did a 'de-sensitization' process for the new medication I'm on...which praise the Lord, i'm not allergic! Yay! That was the big hurdle to get over and since I'm not allergic to it and my body took the meds pretty well, I am hoping to be moved to the regular CF floor this morning or afternoon.
I will be glad to move, and hopefully get some quieter sleep...the ICU was not the best place for me to be resting. Glass doors with people looking in on me, machines beeping, people talking, and just being hooked up to all sorts of monitors and machines makes it a little harder to sleep. I did get a little rest here and there, but i'll be glad to be in a more-settled room downstairs... :)
It was an interesting experience, being in the ICU. I spent some time alone, thinking last night, and though it's a new place and a was a little scary for my first night, and it's hard to be in the hospital anyways, I was also feeling very thankful...Thankful for great doctors (that I'm starting to get to know) and nurses who really work hard to take care of me, thankful for good health care, thankful for incredible family and friends who support me and help me not to feel alone at times like this, thankful for being healthy enough to be 25 years old- God is good.
More later, hopefully next time I post i'll be posting from the CF floor...
time to eat my breakfast...(if that's what it is... ;)
Friday, August 22, 2008
So far, it's been a good experience. My first stop is the ICU...Which don't worry, was the original plan. It's a nice floor, big beautiful windows, and great nurses and staff. I've seen my dr, and they have me all set to stay the night here to be monitored closely. I thought i'd be moved to a different floor before evening, but I guess the plan is to keep me here through the night. I'm starting some new meds that they want to test and make sure I don't react adversely to, so i'll be here all night as I go through my first cycle of meds just to make sure all goes well.
It's definitely a new experience for me- I've never been in an ICU (that I can remember) so to be hooked up to all sorts of machines and be watched through a glass door is a little different. But, everyone has been great and knows a ton about CF so I feel i'm in good hands...Now, i'll just be hanging around and waiting for the meds :). I may post more later, but till then- thanks for checking in and for taking these new steps with me through the blog!
Love to all,
Thursday, August 21, 2008
As of now, i've had Gilmore Girls season 7 and my fabulous mom to keep me company :)
One of the reasons I started this blog, was to keep my friends and family updated on life with CF- the good, the bad and the ugly...haha. So feel free to check-in with my blog for updates and maybe some interesting stories from my new hospital (USC University Hospital) as I'm no longer at CHOC (I grew up :). You never know what kind of stories can come out of hospitals!
As always, thanks for the support, friends...if it ever gets too boring, I'm never offended if you don't check-in. I am always so grateful for the love and support in times like this (and always). So thank you for caring for me as you do.
Love to you all,
Tuesday, August 19, 2008
As I look back on the night of the gala, I am just stunned by the amount of people that were there to hear about CF, the amount of people working hard to put that event on, and then the amount of people who talked with me after I spoke. I talked with many people, and I heard throughout the night of the impact i've made on people, I had no idea and was just stunned by what people said. I've never felt like public speaking was something that I wanted to do...until now, I see that God has placed that ability in me and I see how I can be used for His glory and for good.
For years, I've wondered "What is the purpose in my having CF?" I've read bible passages like Jeremiah 29:11 and Romans 8:28 and i've wondered- how can God use something like CF which is a terrible disease, for something good in His plans, when CF has already altered many of my dreams and plans? Whether you are a Christian or not, most people have wondered "What is my purpose, what am I here for?"
For the first time, at Pipeline, my eyes were opened and I was humbled to see God using CF for good. I felt like my life had a purpose, and I was blown away by that. First, my life and story were used to bring awareness about CF and raise research money. But more than that, my life was used for God's glory as it was obvious to me- I can't do this without God and my prayer was that it would be God who was seen through my heart. Secondly, I felt it to be an incredible honor and responsibility to be an adult with CF, sharing my life and story. I know that the money and awareness raised that night was not just for me- but for the 70,000 other CF patients worldwide. I feel incredibly purposeful knowing that my being alive and 25 can be used to not only bring God the glory, but bring encouragement and hopefully research that many around the globe will benefit from...
Lastly, I realized, if I could work with CF and do my part by using the gifts that God has shown me, to help raise awareness and hopefully bring about a cure through research, then I want to do this the rest of my life or until a cure is found :). I've never thought that working with CF in my life would be something I love- for years i've been shy, I didn't want CF seen in my life and I've been scared to share this disease with others. However, now, I've seen that God can use me, and feel comfortable with my life with CF, I hope to continue doing this. I loved being there, being an 'ambassador' on behalf of the CF Community and I feel a sense of purpose and joy as I'm doing what God has put in me. I have a passion for the CF community, and God has shown me that this is something I am made to do for me and for others with CF...My prayer is that God will continue to use me, and show me how I can use my life with CF for his good. I can't wait for next year, and for all God is developing in me and through me in this campaign to raise money for CF. I am honored to be a part of it :)
Here's to a cure for CF, and for Pipeline to a Cure 2009!!
Fun pics from the night:
Monday, August 18, 2008
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!
Friday, August 15, 2008
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...
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...
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!
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
Anyone else doing the same? :)
Tuesday, August 12, 2008
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!!
Friday, August 8, 2008
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.
Thursday, August 7, 2008
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:
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)...
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 email@example.com
Tuesday, August 5, 2008
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
Monday, August 4, 2008
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 :)
Saturday, August 2, 2008
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!