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.
~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 :)

I'm still Learning...

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

Living A Double Life

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

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

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

Guess I'm not as much like Superman as I 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