An Amazing Friend & Teammate

Oftentimes when discussing NF I tell people that as challenging as it can be, if it weren't for NF I would have missed out on meeting some of the most awesome people I know. My friend Sarah Johnson is one of them! We met a few years ago when she first started running for the team in Long Beach, and over time she has inspired me with her amazing attitude.

Sarah has NF1, which is different from NF2. She does not have tumors on her hearing nerves like people with NF2, but NF1 can still cause tumors on any nerve ending as well as learning disorders. Having Sarah at our events each year is always uplifting, I have never seen that girl without a smile on her face and her enthusiasm is infectious.

Earlier this year I got a panicked email, Sarah was at work when she passed out cold. After being rushed to the hospital they found a large tumor on her brainstem! This was a complete shock to her, and a serious medical emergency. She was admitted right away and within a week she was having major brain surgery for the first time in her life. As soon as she was able to communicate again she was sending messages through her family to let us all know she did fabulously, thank God.

Now after having major brain surgery you would think Sarah would need months of time to recover before even thinking of running again, but within a month she was jogging and trying to get her strength back! She was actually upset that she wasn't as fast as she had been before surgery and frustrated by the speed of her recovery. I think most people would have gotten in bed and pulled the covers up over their heads, but not Sarah, she just kept pushing and training and recently she announced she will be running with us in Long Beach this year!

I am excited to see my friend, and proud of her for how far she has come in her journey. No matter what her finish time she will win because we all have to run our own race, and Sarah shows me that every day!

Check out Sarah's fundraising page and read her story:

http://www.active.com/donate/nflongbeach2011/SarahLB131

An Inspirational Teammate

I am so proud of Christy Vazquez! She is our first Long Beach NFE team member to get her fundraising started for 2011. Her long time boyfriend Gabe Rios has NF2, he has lost several family members to the disorder, most recently his sister Jessica who was only 28 years young. Christy's dedication to Gabe and his family is remarkable. Last year she shaved her head in solidarity with Jessica and motivated many of Gabe's family members to come cheer as she ran a full marathon for CTF in Long Beach! This year she is back, and once again running the full marathon with the goal of raising $2610 in support of NF research. She has dedicated this run to Jessica's memory, and I know she will make us all proud.

Christy has another reason to run strong, very recently Gabe proposed to Christy and she accepted! Everyone who knows them said the same thing, "FINALLY!"

You can check out Christy's fundraising page and make a donation here: http://www.active.com/donate/nflongbeach2011/teamrios

My Mom's 45th Birthday

Summer is here, and my kids are running around like crazy miniature people enjoying the sun. To me summer means running hills in the heat, pool days with my kids, veggie burgers on my side of the grill, and planning for the Long Beach Marathon. This is my 3rd year participating in Long Beach with the NF Endurance Team, and it has become an annual priority for me. In between all of this summer fun, NF2 lurks in the shadows, and I can run as fast as I want but it always follows me. That is why it is so important to raise money for research, so we can develop a drug to help stop tumor growth, and in the long run CURE NF2!

July 22nd would have been my Mom's 45th birthday. Nobody should die so young they miss their 45th birthday. It is unacceptable. For all of the cheering, running, planning and attempts at motivating I can do, the one simple thing that it boils down to is I miss my mom. I miss her, and I don't want to go through the painful things she went through, nor can I fathom JT having to suffer as well. For a long time there was nothing I could do, but I truly am hopeful things are changing with the help of CTF and the dedicated researchers out there making amazing advances. So instead of just waiting for it to happen, I run. I run in hopes of grabbing your attention and encouraging you to support the cause in the one way you can.

On July 25th I will be walking the San Francisco marathon's 5K with my Nana in memory of my Mom's birthday. We will spend every mile remembering her, and missing her. I ask if possible for my friends & family to make a donation in her memory. Below is a link to my donation page, I appreciate any donation you can make and thank you for your continued support on this journey.

http://www.active.com/donate/nflongbeach2010/Olivia

A Leader is a Dealer in Hope

I cannot believe this year is flying by so fast! Before you know it the Long Beach Marathon will be upon us on Oct 17th. This year I am once again serving as Team Captain for the Mighty NF Endurance Team! I just built my new fundraising page including a spiffy new photo collage for this year's event and wanted to share it with you all, its at...

http://www.active.com/donate/nflongbeach2010/Olivia

(You can always reach my fundraising page my clicking the collage on the left as well!)

I have had my heart broken too many times by this disorder. As you all know I have lost 3 family members, but I have also lost friends. Too many over the years to count. I often receive emails from all over the country, even the world, asking my advice as someone who has had this disorder in their family for so long. I do my best, and stay active in the community, knowing that these people I grow to love will most likely lose the battle much too young. Friends who are my age and just do not wake up one day. I am tired of waking up to find another friend has died, another friend has been told there is no more to be done for them, another friend cannot walk, or hear, and they live so far I cannot even be there to offer a hug. What I can do is tell their stories. By informing more people about NF2 we encourage more donations and raise more money for research. The best way I know how to do that is to run, and so I do the only thing I can.

I am setting a goal of raising $5000 this year. I know it sounds like a lot, but I truly believe if I put my mind to it I can achieve this goal. There are actual clinical trials for drugs that can potentially STOP TUMOR GROWTH going on right now! CTF is the largest private funder for NF research, so by running with them I feel I am doing the one thing I can to fight back. I have to do something, because doing nothing is just not an option anymore. I am asking all my friends and family to join me by donating any amount that you can. Every dollar counts, and together we make a strong team! Together we can actually make a difference and fight back!

Thank you so much to each of you who has taken the time to donate, volunteer, or just offer friendly support! Please feel free to share this link with as many people as you want, there is power in our numbers!

Fall out...

My stove is sticky, my laundry is in a huge pile, my kids are eating Top Ramen (again), and my acrylics are ready to fall off... I have a midterm, a paper due, and a week long trip to pack for. I have been so focused on this marathon, and supporting the team, that my home has fallen apart a bit. I wouldn't be too worried, except that my Nana is staying here with the kids while I am gone next week, and as Tish pointed out, this place should be as clean as a hotel... um how about a motel?

Instead of really accomplishing much today I have puttered, sipped coffee, and moved piles around. I am really good at reorganizing piles. Go me! However, I did get my marathon wrap up emails out to both the team and my supporters! I also found out that I was mentioned in the Long Beach Press-Telegram's write up of the Long Beach Marathon! Front page! I plan to play the "I ran a marathon" card for another day, and yes that does include wearing my medal everywhere.

Now I must peel myself off of this desk and actually accomplish something concrete before Paul comes home. If he gives me the look, I'll just wave my medal in his face.

Back to Basics

For the last week my blog has sat empty, hiding her face in shame. I just can not rectify quitting the full marathon with myself. At night I toss and turn, unable to see myself finishing a half in my mind's eye, instead I remember the split off point at Long Beach last year where the full marathon runners wearily continued on while us half marathon runners sprinted to our easy finishes. Back then I thought those big-calved people in nike running shorts downing clif shot bloks were absolutely insane, and by the time many of them finished I was at Boston's slamming potato skins and beer. This year is different, I am different, and I have to run the full marathon.

The naysayers started in on me several months ago, and the doubt manifested itself in my sub-conscious, rearing it's ugly head in the depths of my longest runs. Never before had I stumbled to a halt mid-mile with trail left before me, but it seemed like every training run I did I took on the weight of a marathon and forgot to focus on the mileage at hand. How did I allow myself to look away from the horizon? Usually I know what to tell myself to keep running past the breaking point, but my voice was drowned out by my pulse beating ever harder in my head as my mileage climbed higher. No music, no complex issues in my life I need to work out, no time to find a challenging new trail, and a pile of laundry awaiting me at home just made every run feel lethargic... slow motion... even boring. I longed for the last mile as I started the first, and forgot to enjoy everything that happened in the middle.

As I have rested my knee and focused on shorter runs over the last 2 weeks I have realized how much I missed running, and why I set out on this journey to begin with. I can't just give up, I have come too far and worked too hard, I expect more from myself then being a quitter. Come race day I will cross that damn finish line at 26.2 miles. I may have to run and walk intermittently... but my yellow CTF jersey and I will finish!

(and if I ever try to quit again you people have to slap some sense into me!)

Live to Run Another Day

In our family we have a tradition, on your birthday you are the big bad boss. Everyone has to do what you want, and you don't have to lift a finger... for the entire weekend. Last night in a moment of sudden genius I turned to Paul and informed him that for my birthday he would be running a few miles with me. He begrudgingly obliged.

This morning after dropping the kids off, we laced up our running shoes and took off at a steady pace. I felt my pre-birthday wine sloshing in my belly, and the heat beating down my shoulders... but with Paul alongside me I was content. We covered just 2 miles, a perfect first run for Paul, and as we walked back to our place my knee started to swell. As we contorted into yoga positions I kept glancing at my knee, unrecognizable from just an hour earlier.

26 miles is incredibly far, and I will finish a marathon. There is just no way I can run that distance 3 weeks from now. My body is not ready. I have no choice but to drop down to the half marathon, and continue to train for the full marathon at my next race in Las Vegas.

As I type this I want to delete it, I want to put my shoes back on and run 20 miles right this second, proving that I am not a quitter. Everyone who runs a marathon has doubts, but I have to be realistic and recognize the difference between doubts and an injury. If I attempt the full marathon chances are I wont make it the entire way without seriously damaging my knee. I want to live to run another day. I am not quitting, simply granting myself an extension.

I sincerely hope I am not letting any of my supporters down! I will still run the half marathon, and then be prepared to cheer on all those full marathon NF Endurance Team warriors as they cross that finish line. I'll never give up...

I will...

I'm sitting at a bus stop approximately 14 miles from my house. I have dirt smeared across my calves and salt extracting from my pores, but that doesn't bother me. All I can focus on is my knee, which is swollen and throbbing. At 10 miles into a planned 20 mile run with Jen and Holly my entire body felt good, but my knee digressed. What started as a dull ache became a sharp stab of pain with each step until, finally, I admitted defeat and stumbled to a stop. I told the girls to stick to the pirates code, they protested but I assured them I would survive. As they continued on without me, braided ponytails swinging neatly from side to side, I plopped onto this cement bus bench. I attempted to extend my knee and sucked my breath in sharply, waiting for the pain to subside, before calling Paul to come pick me up.

I wouldn't watch 3/4 of a movie, or return a book to the library after only reading half. Nobody likes a quitter, and as I hobbled over to climb into the car I looked longingly at the unfinished trail stretching toward home. I know I need to rest my knee, ice it, and slowly build my mileage back up. If I had limped through the rest of today's run, I would have no doubt sustained an actual injury and been completely unable to run the full marathon in Long Beach. Along with the nagging pain comes the self-doubt. How will I run 26.2 miles? It is so much further than I first estimated. My mind battles within, slinging comebacks at every complaint. Only .1% of the population finishes a marathon in their lifetime, and I am so close, there is no way I can stop now. I will finish the marathon... I will sell all of the tickets to the benefit I am throwing... I will pass my classes and transfer to a university... I will reach each and every goal I have set, and when I reach them, I will continue to set more.

*NEVER GIVE UP*

5 weeks to 26.2!

As most of you know I was born with Neurofibromatosis type 2, a genetic disorder that causes tumors to grow throughout my brain and spine. I've had numerous surgeries and radiation, and lost 3 family members to the disease, including my Mom. My son JT has NF2 as well, and is my hero! At age 6 he is already visually impaired, but he never let's it stop him! He is obsessed with breakdancing and Michael Jackson, and uses sign language to help me wherever we are at.

Last year I joined the NF Endurance Team to raise funds for NF research and fight back! The NFET raises awareness and research dollars that enable treatments and a cure for neurofibromatosis.This year I am serving as Team Captain at the Long Beach Marathon, and am trying my hardest to bring as many people affected by NF together as possible for a day of running and celebration!

The Long Beach Marathon is now just 5 weeks away, and I will be completing my first 26.2 mile full marathon! If you have read my blog you know I have been struggling with the heavy weekly mileage during training, and have had doubts. I was thinking this morning that training for this marathon is so much like having NF2! It is a constant uphill battle, and I need to be prepared not just physically, but mentally. When I prepare for a surgery I go through a very similar process, working out to increase my muscle strength, and controlling my emotions in the face of an impending struggle. With at least 5 serious surgeries in my past, I know I am capable of running this marathon! After all, it's better than brain surgery!

So as I continue to train, and push forward, I want to thank all of you who have taken the time to donate on my donation page or volunteered to help us out on race day! In a time when all of us are being more careful with every dollar, it means so much to me to still see people donating to such a serious cause. CTF is making great strides in the fight against NF, funding research programs and clinical trials as well as promoting awareness! I am proud to be a part of such an amazing charity!

My fundraising goal for this year is $5000, and as of now I have raised $1,830! So right now I want to ask each of you to consider making a donation and helping me get closer to that goal! Every dollar counts, and I greatly appreciate any size donation. Donating is simple, just CLICK HERE! If you are unable to donate online and would rather write a check, please email me and I will get you set up right away.

End of an Era

So the next time I run a half marathon, someone please remind me not to take an entire week off to eat, drink and be... lazy! This week I had to break the bad habits that seem to form much quicker than good habits. My first day back at the gym I stepped on the scale and had gained 3 pounds! In one week! Why does it take 3 months to lose 3 pounds and only 1 week to gain it back? That little stab in the eyes has motivated me throughout this week and I already feel myself getting back into my groove. Eating this week has been excruciating, last week at one point I had about 7 pieces of pizza for dinner, dipped into 2 full containers of garlic sauce and washed down with a couple of beers! Not even light beer! So this week when I attempt to fill up on a normal portion size there is space left over and I am just plain hungry. Do I regret those 7 slices of red crushed pepper covered heaven? Not one bit! Nor the wine, plate of chile rellenos, or 2 bags of Doritos. The extra sets of reverse crunches that trashed my core today were so worth the potato skins and pazookie I added to my regular pizza and 2 pints at BJs. Pizza and beer seem to be a theme here.

Vacation time is now over, JT starts back at school Monday. With the school year comes early alarms, mostly vegan meals, hard workouts, and early bedtimes. Only 9 weeks until I run the full marathon in Long Beach! Oh my goodness I just counted that on the calendar and it is much sooner than I thought, I have a lot to get done, and I'll just have to do it without pizza and beer!

4 Months to 26.2

I want to sincerely thank those of you who have already donated to CTF on my Active Giving page, and really gotten the ball rolling! We have already raised $400! We have 4 more months to reach my goal of $5000 for this year. I've been going on my long runs and really focusing on training, and when I feel like I can't take another step, I remember that I am running for all of you who have supported me this entire time.

Next month, on July 26th, I will run the half marathon at the San Francisco Marathon and am excited to run across the Golden Gate bridge! San Francisco holds special meaning to me. My Gramps has lived in the Bay Area since long before I was born, and the best part of every vacation in my childhood was visiting his beautiful home and spending time with him and my Grams, and now Diana. My Gramps has been a constant source of stability in my life, and will be at the SF Marathon to cheer me on! I cannot wait to see him at the finish line. We have agreed to dedicate this run specifically to my Mom, Kari, who we tragically lost a few years ago just 3 months before her 40th birthday. She was 39 and lived in a nursing home, unable to care for her most basic needs and completely deaf. On July 22nd she would have been 44 years old. When I run on the 26th I am not just running for her, but also for my Gramps, who has suffered the loss of a wife and 2 children at the hand of NF2. Nobody should have to live through that much pain in one lifetime, and still he handles it with dignity and grace, always caring for everyone around him and wearing a smile on his face. He sets the example for me that no matter how unfortunate a circumstance, life carries on and holds happiness for us all.

CTF is making great strides in the fight against NF, and even specifically NF2. All fundraising dollars donated on my page are specifically earmarked for NF2. A specific example of how this money is used is CTF's current funding of a clinical trial testing the efficacy of a drug called Lapatanib on NF2 vestibular schwannoma. For those of you who have been on this journey with me over the years, you know it is amazing that drug therapies are now visible on the horizon for NF2 patients!

CTF has given me a focus for my energy, a way to feel as though I am really making a difference and not just waiting for this disease to take over my life. CTF is helping me to fight back, and I am asking all of you to fight back with me by donating on my Active Giving page, http://www.active.com/donate/nflongbeach2009/Olivia

Thank you for your support and *Never Give Up*

Crossing the Finish Line!

My... abs.... hurt... I have been so focused on them over the last week they just screech everytime I take a step. Adding fast sprints to my shorter runs has really given my training a much needed kick in the ass. My girlfriend Jolene and I have started doing some runs together, and it is so refreshing to have company and not be the only lunatic flailing down the road. Today we're running the 3 miles to the gym, weight training, then running back and doing yoga at my place. I'm actually looking forward to it, and know I will be deliciously sore tomorrow. Even now my mind's eye is distracted, tempted to put on my shoes and just run straight to the top of Day Creek where I can look out over the entire city and then enjoy the windy jog back down. I just have to avoid the black hole of the sofa, and stop taking little "vacations" from my routine for every tiny reason, and the next thing I know I will be crossing the marathon finish line in Long Beach and partying on the beach without hiding under a cover up!

As CTF Team Captain I'm encouraging all of you to join us in Long Beach and get running! We have a team of 433 Ironworkers running the 5k, and a team of local Mommy's walking the 5K in tiaras, a couple of friends are signing up for the 1/2 and full, and there will definitely be an after party so we can down a few much deserved ice cold beers! If you are interested then sign up here with the NF Endurance Team, then go here and sign up for your event at the race registration website! If you plan on running the full in around 5 hours contact me, I would love to have someone to run with, so who wants to cross the finish line with me?

2:37 baby yeah!

I did it! It was fun and hard and sweaty but I ran 13.1 miles and didn't stop the whole way! More details and pics to come!