Wednesday, July 30, 2008

One Run at a Time...

Last night I did my first hill run. I used to map a solid run with a few hills, separated by flat stretches. I set out for my run with the intent of meeting Paul at the gym, working out, and riding back with him. Starting out everything went great, even my first hill was not so bad. Then I hit a stretch of flat ground with absolutely no shade for about a mile! As the hot summer sun beat down on my neck I was incredibly tempted to text Paul and give in… I even started walking instead of running. As I walked with my thoughts I realized walking and quitting are not options! I told myself just start running! I pushed through and ran the rest of the way, even after I realized I had passed the gym and had to backtrack a street! When I finally walked in to the crisp cold gym I felt wonderful, and instead of thinking of my next run I just allowed myself to be in that moment, proud of that one specific run. So that is how I will do it now, one run at a time, one step at a time. It really is true that endurance running is about your mentality more than anything else.

I woke up a bit stiff today, and I was lucky enough to go for a massage using a gift certificate from my good friend Clara! It was a full body relaxation massage, and I could literally feel the tension and doubts being released from my body as the girl worked. I glimpsed myself in the mirror as I redressed and realized I have developed a newfound sense of self. In the past my body has always let me down. I have always felt like my body is a traitor, and that my mind is trapped in this diseased vessel. With running I have developed more respect for what I am capable of, and have found a way to transcend those boundaries I had always assumed were impenetrable. I started this journey with the intent of raising funds for NF2 and running the Long Beach half-marathon, now I realize this is only the beginning…

Tuesday, July 29, 2008

I still have sand allover my house...

I hope at least a few of you noticed there was no post yesterday! I was gone all day at Huntington Beach with the Fabulous Moms of RC. There were a lot of us, over 20 including the kids! As I sat repeatedly rinsing sand off of the apple Mica was devouring, completely paranoid she would ingest some weird strain of bacteria, I remembered how going to the beach used to be... It used to be that I would throw on a tiny bikini, grab a towel and every issue of Cosmopolitan laying around my trashed room, lay out all day, throw on a sundress and go party after. Now I squeeze into my one-piece, pack my entire house into the mini-van, grab my Runner’s World magazine that ends up forgotten in a heap of dirty towels, and drag it all half a mile to a spot, only to drag it all back with a 30 pound toddler on my hip and an extra 10 pounds of sand. While we were at the beach a few of us Mommy’s watched the junior lifeguards running down the beach, overtly coveting their crazy flat tanned abs. As jealous as we may be, we would never trade them for the world. Well of course we would trade the abs, but not for the kids! Well maybe just one of them.... Anyway I am sure just as many of those young ladies were sneaking glances at my adorable kids and just praying, that maybe one day, they will have chubby sandy babies of their own to chase. Or maybe they were wondering why I was following one of them with a bottle of water repeatedly washing an apple? The fact remains that while the grass is always greener on the other side of the fence, I’m perfectly happy with my little patch of dirty sand.

Sunday, July 27, 2008

A quick summary of today's training!

Woke up bright and early this morning and ran this run with my friend Jennifer. I drove and clocked it after and it was about 6.8 miles! It felt so good to get out on the trail and feel the fresh air. I had Jennifer take some pictures, which was not awkward at all in the middle of a park! Came home, did some yoga and have been staying on track with the healthy food all day. Ok... I had some popcorn... allegedly... If loving food is wrong, I don't want to be right! I earned it with those miles!

Tomorrow is my rest day and I am heading to Huntington Beach with the Fabulous Moms of RC!

The NF2 Crew

You know you’re a Crewbie when…

… you wake up to 300 emails every morning!
… you’ve never met your best friend in person!
… you know more about NF2 then your neurologist!

The NF2 Crew is an online support group formed many years ago by several members of ALDA (the Association of Late Deafened Adults) who realized they were all late-deafened by NF2. They joined together with the intent of supporting each other through an email list, and have evolved into so much more than any of us could have prayed for...

The Crew has grown so much over the years that it is now an integral hub of the NF2 community. My own Mother was one of the first members, and I remember as her disease progressed all of her friends were online buddies she had made through the Crew. She would spend hours reading through the mail and communicating with her friends, the only people who could understand how she felt. Sadly, my Mom lost several very close friends to NF2 and just could not handle the heartache of repeatedly attaching herself to people who were dying. Between her fear of opening up only to lose again, and her waning vision, in her final years she chose to leave the Crew. At her insistence I joined and picked up where she left off. It was a wonderful gift that she gave me. I have made amazing friends. I have a place I can go and just vent to people who have been there, and don’t just nod in pity, but rather compassion. People who knew my Mom, and knew her struggle, and now we all struggle together.

Perhaps most importantly, the Crew is the preeminent place to get information on up and coming treatments and technologies. NF2 is a relatively rare disease, and many people are hard-pressed to find a doctor who knows enough to guide them through years of complicated health issues. There is strength in our numbers. As we share knowledge between ourselves we develop a standard of modern NF2 treatment, and demand a level of competence from the doctors who treat us. Through networking on the Crew I have learned of a drug therapy that I am currently taking on a trial basis called Propolis. I will go more into Propolis in its own post, but I will say the results have been promising, and I never would have found it without the Crew. There are people on the Crew who have studied and researched this disease more thoroughly then any doctor I have met, and all of the Crewbies reap the benefits.

Recently I have volunteered to moderate the Crew’s mail list, and I am proud to give anything back to this group of outstanding people who have done so much for my Mom and myself. If you are interested in learning more please visit us at

As we say on the Crew, Never Give Up!

Saturday, July 26, 2008

Turning Doubts into Challenges!

So today was my cross-training day! I chose the elliptical machine, and while it definitely broke the monotony of consistent running I couldn’t help but glance longingly at the treadmill every few minutes. The elliptical machine can be wonderful for toning and weight loss, but it can never replace knowing you have covered a specific distance using nothing but your own body. I am very pumped up for my 6 mile run tomorrow morning with my friend Jennifer! It is my first time running with another person and I hope we push each other to our limits!

Since there are only 10 weeks left my diet is going to get a bit more intense. I don’t mean diet as in fad diet, I simply mean my daily meal plans. I aim to always eat this way, but pizza happens! I’m going to share a typical day for this running vegetarian:

Breakfast: Luna Bar, glass of almond milk with protein OR my Awesome Smoothie
Morning Snack: piece of fruit
Lunch: PB&J and raw broccoli
Afternoon snack: handful of goldfish crackers, raisins, edamame
Dinner: a full vegetarian meal, usually including a soy product, whole grain, veggie, cheese, and minimal fat
Dessert: piece of dark chocolate and/or small teeny tiny glass of red wine
In addition: 4 liters of water throughout day, a horse size multivitamin, and propolis (which I will explain in a later post.)

As of tonight there are exactly 10 weeks left until the Long Beach marathon. I am filled with mixed emotions, excited first and foremost! I cannot wait to cross that finish line and know that I have come from barely walking after numerous spine surgeries, to running 13 miles and for a good cause. I am also very nervous, what if I fail? What if I am hurt while training and have some sort of anti-climactic end to this amazing journey I have embarked upon? What if I let everyone who has donated to CTF in my name down? Then I remind myself that there is always a way around every challenge. I have to use positive imagery and picture myself completing this trial. I WILL finish. In 10 weeks I will run across that finish line holding in my heart the memory of every family member and friend who has suffered in the grasp of NF2. I will have brought us all 13 miles closer to a cure. It may not be much, but it is all I have to offer.

Friday, July 25, 2008


Complicated is the first word that comes to mind as I sit with the intent of describing my Mother. Her life, her health, our relationship, all complicated. She married my Dad at 16 and had me at 17. By her 20’s she was deaf, in her 30’s she was paralyzed and bedridden, and 4 months before her 40th birthday she passed away in a torrent of pain. She married so young, was incredibly naïve and fiercely intelligent at the same time. She taught me young that pain is beauty, and she was absolutely gorgeous. I remember sitting and just watching in amazement as she delicately applied her makeup and feathered her brunette hair every morning. We looked nothing alike, and had nothing much in common besides sharing a horrible disease. She was the quintessential perfect Mother my entire early childhood, until one day a migraine caused it all to come crashing down. That one migraine was the beginning of years of horrible, blinding, crushing daily migraines. Her health was in no one’s control and the issue quickly suffocated our once amazingly close-knit tiny family. I became care-giver, handling insurance companies, rude nurses, mixed up prescriptions all by age 13. At the same time I was still a child, and had to follow rules. We constantly battled, I felt entitled to the perks of an adult being that I was expected to be the adult so much of the time. It was a difficult situation for everyone involved, in the end my parents divorced, I left the house, and our American Dream was shattered.

I continued to care for my Mom since she was now completely alone. (Her father, my Gramps, was my closest ally in the battle, but lives in the Bay Area) She ended up in a nursing home, unable to walk, her face paralyzed and unable to eat normally, her back crippled into a painful hunch from countless massive surgeries opening her spine. Her once thick lustrous feathered hair was now short and boyish, simple for the nurses to care for. At age 20 I spent my entire pregnancy knitting on the floor of the ICU after a particularly bad surgery took most of her functions away from her. The nurses knew me all too well after dragging me kicking and screaming from her bed as she convulsed in seizures, and finding me sleeping in a ball outside the ICU locked doors.

After months of rehabilitation she was finally released to the nursing home, and I was finally blessed with my son. For years I had feared becoming my Mother, but when I had my son all I wanted to be like was my Mother. Suddenly she was the one with the best advice, and as I gazed at my own newborn I finally understood why she fought me so hard. We were connected, not just by NF2, but by an incredible love that engulfed us and made us blind to the hurt we had inflicted upon each other. At last we were at peace, but a new battle had started within my Mom. The tumors in her body were growing so quickly there was no need for tests or surgeries any longer, all that was left to do was wait. On Saint Patrick’s Day after a simple procedure she developed sepsis, by the time we arrived she was already in a coma. After 15 damn years of sitting by her side, I had missed her final moments. She fought hard in that final day, tied down, intermittently fluttering her eyes, I knew she wanted to stay, but there was nothing left to fight for. Her body and her mind, had all failed her incredible soul. In the final hour I held her hand, unable to even comfort her since she was unable to hear, I just squeezed her soft hands, remembering the long crazy acrylic nails she loved to have for so many years. Suddenly, she was gone. All the years of waiting suddenly felt like they were not enough, I walked outside and just wailed. How was I to live my life without her? The only one who ever knew me, the only one who was me?

Sunshine seems lost
Will you see it shine again this summer?
Warm heat on my bare shoulders as I walk this path alone
Inside a clear glass tunnelI can still see the birds flying above
Can’t hear their song
Run toward the end
Find my feet at the beginning
We both run from that same shadow creeping
Round the corner so slow
Now comes the moonlight of your time
I still walk where the sun shines
So why do I feel the coldness of the night
Always I see your footprints on the road ahead of me
Try to pass them but can’t seem to just let them be
They are a part of me
But even if I walk away we will see each other another day
Out in the bright sunshine
Until then remember you are mine
Our footprints will step together even once yours have faded
I will keep you in my heart
Won’t let the memories of time be jaded
I was there I know who you are
You should have been a super star
But here we are

The Road to Avoiding Carcass...

I must admit I am a bit of a vegetarian cliché. I picked up a random chick book called Skinny Bitch, and 2 days later gave up the carne asada. A lot of people ask me how I could give up meat, which is arguably the center of most American meals? I thought it would be hard too, but it just wasn’t. After reading about the filthy and inhumane ways animals make it from the factory to my plate, I lost all joy in chomping on other creature’s extremities. When I am tempted by a chicken mcnugget, I just picture a nasty fat chicken with its legs crippled by its unnatural weight. Beak sheared off, feathers sticky and putrid with drippings from the birds above it, thrown whole into a grinder and oozing out the other side as a “nugget.” If you are interested in learning more about the filth and cruelty of meat eating you should check out You can also read Slaughterhouse by Gail A. Eisnitz, and I dare you to ever look at steak the same way again…

So once I had been educated I made the decision to not eat any form of meat. I no longer cook with eggs or milk, but love cheese with a passion. I never said I was perfect! Having NF2, there is of course always a catch. If you learn one thing here let it be that NF2 has a way of affecting every outlet of life. When you do not eat meat you rely on soy to get most of your protein. Soy however acts as nature’s estrogen, the isoflavones in the soy connect with estrogen receptors in the body the same way the hormone itself would. Meningiomas, one of the most common tumors that result from NF2, grow when fed by estrogen. There is recent anecdotal evidence that consuming large amounts of soy could in fact contribute to tumor growth, both meningiomas and breast cancer. I have discussed this with several different doctors. My neurologist immediately asked me, “Did you read Skinny Bitch?” HA! He is obviously up to date on the most pertinent medical information… actually he has a health conscious wife who roped him into going vegetarian after reading the book too! His advice was to eat meat, I told him that was simply not a possibility anymore. We compromised… I take whey protein everyday now, which is an animal product, and only eat soy in minimal amounts. I hate the idea that I am ingesting whey daily, but if it’s me or the cow, the cow is going down! Another doctor let me know I would have to ingest massive amounts of soy to trigger estrogen reception. What it comes down to is that there is simply not enough research on the soy issue to make a definitive decision. When I eat soy there may or may not be a risk involved. When I ingest meat I know for a fact my body is bombarded by hormones, steroids, and poisons. The answer seems simple enough for me!

***I feel compelled to note I am not a doctor and cannot speak for anyone else on the issues of diet, nutrition or soy. These are the decisions I have come to for myself after reading and speaking to my own doctors. I encourage others to research for themselves as well***

Thursday, July 24, 2008

Wobbling for a Cure!

I have a confession… my Mommy duties are definitely not done for the day! My last blog was actually written yesterday, it took me that long to put this together and put the blog up! I am completely new to this and have no idea how to get one of those cute headers with all the pictures. A blogger friend is helping me out and sent me some links, so very soon I will get some visually appealing aspects up, in the meantime you are stuck with some ol’ fashioned simple text!

I have been training for my half-marathon for about 6 months now. This week has been an odd week. Both Tuesday and Wednesday I went to the gym and ran 5.5 miles, then did strength training. I’m taking today off as a rest day. My right foot has had a lot of issues since I started running. Because of the vestibular schwannoma I have had removed or radiated on either side of my head I am not only deaf but my balance is very wobbly. I tend to run a bit funny and have strain injuries on the right side. I read Chi Running and that has really helped, the techniques are very useful. My balance does add a challenge to running, but a challenge just makes things a bit more interesting! So if you happen to live in Rancho Cucamonga and see me running a bit wonky don't worry, and don't honk I can't hear you anyway!

You have to start somewhere....

It’s late in the day and I have most of my Mommy duties handled. Mica is napping and JT is watching TV as I feed my internet addiction. Not that I need another reason to be online but I have an interesting and important story to share, and with the help of one of my BFF’s have come up with the idea of blogging it! Isn’t this what all the hip mommies do now? Blog about their daily battles with random childhood issues. I hate to disappoint you all but this wont be that type of blog!

My entire purpose for beginning this blog is to track my daily journey as a young, Latina, late-deafened mother who was born with NF2. Nf2 is short for Neurofibromatosis Type II, a chromosomal disorder affecting 1 in 40,000 people. It causes tumors to grow anywhere in the body, but always on the nerve bundle controlling hearing, balance, and facial strength. I inherited the disease from my Mother, her and her brother inherited it from my Grandmother. Eventually I was diagnosed as a baby, and my own son JT was diagnosed at a very young age as well. Having NF2 means a shortened lifetime filled with MRIs, surgery, radiation, fear… and hope. Always hope.

I have made a commitment to raise money for the Children’s Tumor Foundation. CTF is dedicated to ending all forms of neurofibromatosis through research. There are other variants of the disease but I will be focusing on my own battle with NF2. You can always visit for more precise information about the foundation.

CTF raises money in many ways, one way is the NF Endurance Team, a running team that participates in marathons all over the country building recognition and funds for CTF. I set my first goal this year to run the half-marathon (13.1 miles) on October 12, 2008 at the Long Beach International Citibank Marathon! My fundraising goal was originally $2,500. By email blasts alone I have raised almost the entire amount, and am now looking to raise as much as I can in the coming weeks while training to run safely and without injury. I am 11 weeks away and have been running and working out in preparation for months. As of this week I am buckling down into a strict training program.

Come back for daily updates! Each day I plan to share another piece of my NF2 history as well as my daily training report! Bookmark me and feel free to leave comments with questions or motivational words!

As always, Never Give Up Hope!
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