Tomorrow

I have not run since Wednesday! I am going crazy! I am finally running my first 10 mile run tomorrow morning! I am nervous and excited at the same time. For those of you who are local, I am running from Vineyard and Arrrow, all the way down Arrow past Fairplex to C Street! That seems so far because I usually run out and back, but this time I am just running the whole distance and Paul will pick me up at the end! I just keep envisioning myself completing the run and feeling that incredible satisfaction. I am rewarding myself with a new fuel belt and the Nike plus wristband! Ok so I am also rewarding myself with a nice glass of wine and some dark chocolate that evening!

Chivalry is DEAD

The other day I took JT to the allergist and as I was sitting in the waiting room an older couple came out from the back. The wife was pushing her husband in a wheelchair, and glanced around the tiny room looking for an exit path. Immediately I stood, sat my kids out of the way, and smiled of course. There were 2 grown men sitting there, not even reading or predisposed in any manner. Neither moved at all! I quickly stood and went to hold the door open, smiling as the couple passed and wishing them a nice day. As I came back in my face quickly changed to a scowl as I shot both men judgemental looks and went back to my spot. What is wrong with people today? I don't mind opening the door, but I am the only one trying to wrangle 2 young children, and neither of those men even thought to open the door for that couple. One was even sitting with his mother. JT is 5, and when the door is not a huge heavy wooden door such as the one in that office, I already instruct him to open doors for people. Not out of laziness but out of good parenting of course! I am not even sure if my judgement should lay with the young man who sat with his mouth slightly open, or his mother with the pursed lips who obviously should have told him, "Close your mouth and go open the door for that couple!" I have had men let a door close right on me as I was pregnant and carrying a screaming toddler. I know feminism murdered chivalry, but shouldn't there still be such a thing as common decency?

Sacrifice and Satisfaction

I love long weekends! I love having time to just be with my family and enjoy the time as it passes. Too often I feel like life is just zipping by, and I wonder if I am middle-aged or past that even at 25. Being with my family makes me feel normal, reminds me I am normal. My Gramps and Nana, and my Dad and Tish are all coming down this weekend. We are also going to visit my Nani and Daz. Sunday we're heading back to Raging Waters, my parents and Paul's family are all going too! So I get to see all of my favorite people in one weekend!

Family is what it is all about to me. I learned at a young age from my Nani and Daz that family means love with no restrictions. It means sitting around the table having a good meal, hugging every day and kisses every night. It means telling the people around you how much you love them, and having tickle fights as often as possible. Now I have built my own little family unit and I can only hope to instill the same values in them as my own family did in me. Recently in a talk with some single girlfriends one made the comment that she wouldn't want to have to put everyone's needs above her own. I feel that I am a part of a bigger whole now, and while that may mean sacrifice to her, to me it means satisfaction.

31.5 miles in 1 Day?

Don't even look at me, I am so not down with that far of a hike! My crew friend Rebecca on the other hand has been training and preparing to accomplish this amazing feat. A newspaper in her area wrote this article about it and I just wanted to share! You can also find a link to her blog under the NF2 links on the right side of my page.

It Is What It Is

The time has come for my bi-annual MRIs. Every 6 months since I was a little girl I have gone in and had full MRI's of my entire spine and brain. We do this to track my tumors. I want to explain exactly where my progression is with this disease:

Tumors: I can tell you that currently I have about 5 brain tumors, all of which have been radiated at different times using Gamma Knife. All of which so far have not grown since being treated. 3 years ago I underwent a massive spinal surgery in which my surgeon removed so many tumors going down my entire spine they couldn't count. Some were compressing the spinal cord as much as 80%. There was bone removed and muscles cut, it obviously is something that will always cause me pain. I refuse to take pain relievers so I just "suck it up" as my husband would say. I want to be sure people understand that having your entire spine cleaned out in one surgery is not very typical at all. The neurologist went in to remove one area, with the plan of going back in after I had recuperated. However with modern technology, during surgery a surgeon has equipment which tells them if the spine is still stable. My spine stayed stable, so he kept going. Imagine my shock when I woke up with a wicked scar going down my entire spine! Now it has been 3 years and several tumors have grown back, which is what they do. That is the problem with NF2, you keep fighting, and it fights back. I also have several random small tumors in my lumbar spine. I was recently diagnosed with ovarian cysts and my neurologist's nurse has now told me that may be NF2 related as well.

Loss of function: Obviously, I am completely deaf. I cannot hear at all, and hearing aids do not help because there is no sound to amplify. My hearing nerves are completely severed. Near the hearing nerve is the vestibular nerve which controls your balance. I have very bad balance, I cannot stand on one foot let alone walk a straight line. This loss of function is what contributed to me almost drowning at Raging Waters! My entire left side of my body is weak. I can't use my left hand for any small motor function, and cannot open or grasp anything tightly with it. I have double vision which has gotten better after having had the tumor behind my ocular nerve treated with Gamma Knife, but when I am tired everything splits into two!

So now you are all caught up! I have my MRI's this month and will report back here. I have been taking Propolis for a full year now and hope I have had no growth. If I have I will probably continue the propolis for 6 more months to give it more time. There was a full month I did not take the propolis for lengthy reasons I wont go into. I am nervous to find out the truth about my ovarian "cysts" and am hoping I have not had any of my tumors grow freakishly large.

It seems so cut and dry reading it typed onto a plain white screen. As I absorb the reality of the situation I feel oddly disconnected from the future. Mostly I think, I will beat this! I will run, fight, and try anything to stop the progression of this disease for myself and my son! Then there is a tiny but vicious voice deeper in my mind that reminds me that is what my Mom used to say, and frightens me with possible worst-case scenarios. I try to refocus my mind on the positive, I am not a hippie who thinks that will actually alter reality, but what would be the point of living in fear? Regardless of how my story ends, do I want my character to be crippled by fear, or fearless?

My Baby is a Little Man!

Today is JT's first day of first grade! I walked him to class this morning and kissed my little man good-bye. I sniffed back a tear as he made his way into class, I could see the uncertainty in his expression. I wanted to run to him, pick him up, tell him everything in the world is safe and certain. I wanted to coddle him, play with him, build a fort and whisper secrets over goldfish crackers. I could only force myself to back away, to trust that I have raised him right thus far, and now is his time to make his own tiny footprints in the world. He has to stop being my baby, and start being Joshua. It tugs at my maternal heart strings but I am also incredibly proud of the amazing child that he is. Intelligent, compassionate, silly and full of potential. He is my first born, my heart, my blood and my inspiration to stay on the straight path. Good luck little man, I love you JT...

Unbearably Gone...

I'm at the mall with my Mom and she is incredibly angry at me, she yells and her voice is scratchy from the weakness in her vocal cords. She is completely irate and incomprehensible. I find myself slinging horrible vicious insults at her, our anger shimmers between us in an almost visible wall... almost. I wake with a start... I'm asleep next to Paul and my Mom is gone... Unbearably gone...

I've had these soul aching dreams often since my Mom has passed. Those who were close to us know we fought terribly when I was a teenager. We made our peace before she passed but apparently my sub-conscious didn't get that memo. You always hear about people getting visits from their loved ones, loving embraces stolen in the most vivid moments of their dreams. All I seem to have harvested is anger. In my most stressful moments I recall my Mom's cold fingers, never enough circulation to warm them, and so oddly soothing as she stroked my hair. In a flash my mind transposes the image of her cold hands resting that final time in the hospital, never to rouse again... Why can't I dream of the hours of precious time we spent in those last few years?

Since first sharing here about my Mom in the beginning of this blog I have not had any of these dreams. Is it completely twisted that I miss her even more? The volatile visits were at least a chance to see her, and what is left without those images is an unmistakeable void...

My House of Cards is Shaking!

Many times when people find my blog or meet me they remark that I sound like a very very busy person. I usually just smile and shrug. This week my little house of cards is trembling. I just have too many things to do, in a short amount of time. I finally cut a few loose ends and left one of my online groups that was sucking a lot of my energy down. I am also trying to avoid PerezHilton.com but it is a battle! I need my daily dose of the gangstar! I posted my training plans for this week and have tried my hardest to live up to those guidelines. After moving things around I ran Tuesday, cross-trained Wednesday, and hope to run tonight when Paul gets home. My 10 mile run seems to be being put off week after week. My best friend's birthday is this weekend and I know I will not be up to running Sunday morning after a Saturday night! Next Sunday I will run 10 miles in the early morning, and then we will be heading to Raging Waters with my parents and In-Laws, where obviously I will be avoiding the water slides!

I am trying to fit everything in, knowing my baby boy JT starts first grade Monday and things will only get more hectic then as Mica starts playschool the following week. On top of it all JT's allergies are worsening! Last night in karate his ankle broke out with hives and we made a hasty exit. He had another series of blood tests after finding he is only moderately allergic to eggs, milk and mold. Those allergies shouldn't be enough to trigger the reactions he has been having, so this new panel will test for a lot of scary things that I wont go into unless I am forced to by circumstance.

In the coming month I will be following up with JT's allergist as well as taking him to the neuro opthamologist to check the tumor he has on the retina of his right eye. We track it annually and so far no growth since being found! I will also have MRI's and be seeking treatment for the ovarian cysts my doctor recently diagnosed. I told you the cards are shaking! I will just take it day by day, moment to moment if necessary...

The Glass Wall

It is maddening to go through my life without any hearing, knowing there may be a way to have some type of hearing, and it is out of my reach. I just want to go flip on the radio and hear the latest music, or more importantly get out my Doors CDs and listen to my older music. Often when I sit in a group of people I look around at each of their faces quickly forming words that are elusive to me. I busy myself with the kids and wait for someone to include me, despising the feeling of forcing my way into a conversation I wait patiently instead. With my good friends I am never forgotten, but in general situations that inclusion never comes. I have left tables of chatter with no one even noticing my absence so many times. I just have to remind myself that I am doing the best I can to overcome this. I will not just lie down and be segregated from mankind. I don't care if it is easier for people to conversate without slowing down for me, that is absolute inconsiderate rubbish. I have met a lot of good people in the past few years and need not waste my time with those uncompassionate or ignorant of my experience. Personally, having had a deaf Mother who I also interpreted for in group situations I cannot grasp how anyone can sit and converse right in front of a deaf person without attempting to convey the meaning to them . Unfortunately not everyone knows better and even the kindest of people cannot be thoughtful of each moment.

Maybe by having read this at least a few people will be more aware when in the company of a deaf person of what they may feel watching everyone through a glass wall.

A week in the life...

Ok so I have my menu and training all planned out for this week, and am sharing it. All the food is homemade with mostly fresh ingredients. I will gladly share recipes if anyone is interested! I had Mediterranean food for the first time Friday and fell in love, so am trying to incorporate some recipes I found online. Falaffel has to be the most amazing thing I have ever tasted!!! Wish me luck guys, and hold me accountable! Just by posting this I am completely confident I will accomplish this entire list!

Monday:
Mediterranean Sandwich (roasted eggplant, yellow squash, zucchini with pesto spread)
Rest/Yoga

Tuesday:
Soyrizo Veggie Chili
easy 5 miles and strength training

Wednesday:
Bean tacos, brown spanish rice with tomatoes, and green beans
Rest/Yoga

Thursday:
Leftovers
4 mile morning walk, 3 mile repeats and strength training

Friday:
Eggplant Parmesan and gnocchi
crosstrain on elliptical for 500 calories, strength train

Saturday:
BBQ! Veggie Burger kabobs (wedges of onion bagel, veggie burger, pickles, cheese, & cherry tomato BBQ'd and served over greens, and grilled zucchini!)
Rest

Sunday:
Falaffel pitas with eggplant hummus and green leaf lettuce served with pineapple
10 mile run!!! then hit the beach!

Fear not...

... this will still be a daily blog, I just took the last few days to get better so that tomorrow I can get back on track. My cough is still lingering but I am definitely on the mend. This week I am going to throw myself back into training to catch up for an entire week of laziness! I can't complain, it was so nice to sit around eating and having a couple of beers without worrying about a diet or training routine. It was rejuvenating, but I am anxious to get back on track and conquer a 10 mile run!

Taking time to cough...

I have been totally slacking this week! I am sick and have a nasty cough, it has sidelined my training for the past few days and is really irritating me! I just want to get out and run but each time I have made plans to go my wheezy chest has stopped me. I've been planning my first 10 mile run for this Sunday so I am really hoping I feel better by then! If not I may just run anyway and take water with me.

While I am recuperating I have been spending a lot of down time just hanging with my kids. We took a trip to Albertsons this morning...

As you can see JT's face is a bit swollen, he looks like the Joker! He has had an ongoing allergy problem the past few months. Out of nowhere his face just swells up like Hitch! This is the 5th or 6th time. He saw a pediatric allergist and had a blood test, so we will know what is causing it at his next appointment.

Mica has her 2 year physical later today and gets shots, I'm sure JT will enjoy that after she laughed at him getting his blood drawn!

The Fabulous ASL Learners of RC

Last night was the 1 year anniversary of the Fabulous ASL Learners of RC! As always we met for the 2nd Monday of the month at 6:30 at Victoria Gardens in the courtyard between Starbucks and the Food Court. Being able to relax and communicate in a group setting is a blessing for a late-deafened person. When I first lost my hearing and would go to hearing functions, assuming everyone would include me, I was sorely mistaken. Even when people try, they try for a few minutes and then move on to conversate with people who don't need everything written for them. After a few months of being deaf and incredibly lonely, I began to seek out Deaf culture events in my area. I assumed that with my hearing gone I could make a new social home with other who cannot hear. At my first Deaf culture event I was so pumped up and excited to finally communicate freely with other people. I knew a little bit of ASL, mostly fingerspelling and basic words. I was absurdly wrong to think that I would just melt right in with another subculture simply because I lacked the ability to hear. That would be like taking a Spanish class and calling yourself Mexican! Being Deaf is not just about being incapable of processing sound. It is a culture, with its own norms and language, that most members are a part of from a very young age. At 21 I had definitely missed the boat.

I left that first Deaf event feeling very alone in the world, an island unto myself. A hearing person would attempt to speak to me and finding I could not hear them immediately categorize me as Deaf. Deaf people would see me speaking rather then signing, able to voice clearly as a hearing person would while not signing fluently, and classify me as hearing. What about how I see myself? Why do I need to be either or? I float somewhere in between both worlds, never fully able to participate in either as a full fledged member.

A year ago I decided to step up and do something about it. You aren’t surprised by that are you? I hate complaints without action! I started a local ASL group on meetup.com. I posted flyers, and by word of mouth I have 100 members today. When I am at our monthly meeting it is the only time out of the entire month I am able to communicate with both Deaf and hearing people with equality. There are all levels of signers who participate, from ASL 1 students barely learning to fingerspell, to Deaf members who sign ASL fluently while gladly slowing down and assisting the rest of us. I have learned so many new signs, but more importantly I have made a lot of really awesome friends. The entire premise of the group is that all are embraced and made to genuinely feel welcome. All you need is the will to participate and learn. If you are interested in our group please check us out here!

A potluck of thoughts...

I am achy like an old lady today. Yesterday I ran this run and was incredibly tired all day. When I start off on a long run I feel so motivated... Around the first mile my body is not in a rythm yet, and I keep thinking OMG I have another 8 miles to go!! Around mile 3 I hit a stride, and think yeah I am almost halfway! I can do this! At halfway the feelings are mixed, now I can think well I'm over halfway, but then again I am thinking I have to do all that again??? Then about 3/4 of the way I start to feel like well maybe this was a mistake! Abandoned shopping carts start call to me, like I could just coast the rest of the way and nobody would know! I start self doubting... until I catch a glimpse of the end of the run! Then my pace quickens and I run all out, my heart bursting, legs pumping, until I burst to my own finish line with a dizzying last step. Walking a quarter mile home as a cool down is the best feeling, the muscles in my legs and abs feel so tight, and I know I don't have to do that again for another week!

When I run I am always a bit paranoid. As a deaf runner I have to be extremely careful. I don't hear people calling out to me, or cars coming up behind me. I always try to run against traffic so if the sidewalk stops and I am forced to run in the street I can see exactly what is coming. I don't even understand why there are so many areas without sidewalk! What about people who are in wheelchairs? How are they supposed to get around? Whatever happened to accessibility for all?

Speaking of accessibility (yes this is a potluck post, I am bringing a little bit of everything!) why are all movies in the theatre not subtitled? I don't care if the subtitles would "bother" some hearing people, try not being able to understand the movies at all! The only option now is rear view captioning, which is a great advance, but incredibly difficult to work with. I always have a headache after trying to read the wobbly words on a tiny reflector while keeping up with the projection at the same time. I have to wait weeks for the movie I want to see to possibly play twice and at random times. As a progressive society a place as mainstream as the movie theatre should be held to a higher standard of accessibility. I am going to research this a bit and see what I can do to try to change it. I refuse to just complain without making my voice heard!

Now I am off to a playdate with the Fabulous Moms of RC, today I am off training and really looking forward to my ASL group tonight! Anyone in the Inland Empire is welcome to join us! We meet the 2nd Monday of every month at 6:30, in the courtyard between the foodcourt and Starbucks at the Victoria Gardens mall in Rancho Cucamonga! People of all signing levels are welcome, even those who just have an interest!

If you have ears to hear...

I had the pleasure of meeting Jennifer and Amanda at a meetup for the Fabulous ASL Learners of RC 2 months ago. Amanda is 13 and deaf, Jennifer is her stepmother. Jennifer met Amanda's father years ago as Amanda's teacher at the California School for the Deaf, Riverside. They communicate so well together, and have such an inspiring story. After a long battle with her insurance company, Amanda recently recieved a Cochlear Implant! They are awaiting the activation on August 12th, and then Amanda may be able to hear for the first time! I urge you all to read about their journey on Jennifer's blog.

I personally have been tested and found to not be a candidate for a Cochlear Implant. People with NF2 often have Auditory Brainstem Implants implanted when they have their vestibular schwannoma removed. For some this provides a type of hearing, for others it does not work at all. I have wanted an ABI myself for years, but fortunately neither of my VS are growing since being radiated with Gamma Knife, and the ABI itslef is not reason enough for a brain surgery. People who are deafened by NF2 are unable to hear because the tumors destroy the actual hearing nerve. For a CI you must have a working hearing nerve. That is why many NF2ers have ABI's, because an ABI bypasses the hearing nerve and instead uses electrodes planted deep into the brain stem.

I am trying my hardest to provide a place where people can learn about NF2, but I am not the most knowledgable patient, and can only share what I have learned myself. I encourage anyone with a deeper knowledge to share in the comments, and also welcome any questions or corrections.

Good Luck AMANDA!!!

The Naked Baby Walk of Shame

I know what you are thinking, gosh that was incredibly fast for running 5 miles, strength training and stretching! While I wish I was Olympian fast, I was actually interrupted by my Mommy duties. No matter how serious about training I am, nothing stops a session faster then a nasty leaky putrid diaper at the gym. As any Mom who utilizes a gym child care knows when you see the girl walking around peering down the aisles of machines, someone’s child is stinky, and it is probably yours. If I was in fact incredibly fast I would have been tempted to hide from her, but she found me and let me know with a look that my child was indeed the malodorous offender. After expertly disposing of Mica’s diaper and deciding against replacing her obviously poopy pants, we were forced to do the naked baby walk of shame out of the gym.

Oh how I wish this was an isolated event, and that my gorgeous daughter Mica would never commit such a foul act in public. Unfortunately Little Miss Diva has a sensitive stomach. Between her bowels and her attitude, not to mention JT’s penchant for spilling drinks and eating with his hands as I hiss at him to behave-or-I’ll-smack-the-brown-off-you, we have become “That Family.” You know, the ones with the screaming, stinky toddler demanding the fork she has thrown for the 3rd time while our older child whines incessantly that he wishes he were at Burger King? THAT family. Of course Paul would always chuckle, a bit cheekily actually, whenever he came home and had to listen to me complain about Mica releasing her liquid nastiness allover a shopping cart at Trader Joes. Until one day, he was there with me. Parent Bloggers has a contest to blog about a family like ours dining out with our precious offspring, well on a recent trip home from Las Vegas we stopped for breakfast at Coco’s… A bit tired (hung over)we dragged the kids in and attempted to keep them busy with the cheap crayons that always break just as the waitress tries to take our order over the high pitched screeches of my crayon obsessed children. I suddenly detect a smell… I know this smell, it is oddly familiar, sweet, sour and rank all at the same time. Paul and I lock eyes and both look slowly down to see green bile pouring out of Mica’s cute pink sweats, dripping contemptuously down the highchair and saturating the floor beneath her. Panic sets in, and we vainly attempt to stay calm and create a game plan without alerting everyone around us. Paul fetches a plastic bag and napkins from our waitress who is pretending to be oblivious to the entire disgrace, she obviously does not want to be associated with “That Family.” Paul dry heaves and gags as he wipes as much as he can into the bag. I run to the car and grab a towel. The people sitting behind us shoot us damning looks, and leave without ordering, no doubt talking the whole way home about my smelly princess. I quickly wrap Mica up and do a walk of shame out of Coco’s, snaking a trail of tangy stench in our wake. In the car I immediately deride Paul for showing a moment of dry heaving weakness, his defense is that as he began to wipe, the poo… swished. Next time we’ll keep our stink to ourselves and just drive through Burger King!

(This post was written for Parent Bloggers Network as part of a sweepstakes sponsored by Burger King Corp.)

So You Think You Can... Run?

Today I am procrastinating on getting to the gym! It sounds so enticing to lie around watching “So You Think You Can Dance” with a nice glass of wine. Whenever I am having a hard time getting motivated I just visit my Active.com donation page and read through all of the inspirational comments people have left me over the last few months. Some of the comments say what I am doing is amazing, but I in turn find the comments inspiring, and see strength in every person who supports me. I can’t just take a day off, because I have given my word in exchange for peoples’ donations, and I take that very seriously. So everyday I commit to training I have to put my all in it, not just for myself, but for everyone rallying behind me! On that note, I am off to Bally’s. Today I am running 5 miles on the treadmill at an easy pace, then doing strength training, and finishing with deep stretching. What are you up to today? You, yes, you! You do know it is not too late to run with me? You can go here and click to join my team at the top! You can do anything from walking a 5k to running a marathon! You can choose to raise funds for NF2 or just walk/run for moral support! The Long Beach marathon is on October 12, and I would love to see all of you at the finish line!

Mile Repeats...

Today’s training consisted of mile repeats on the treadmill at the gym followed by my own strength training regimen and 20 minutes of deep stretching. Mile repeats are when you warm up, and then run a mile as fast as you comfortably can, then walk for a quarter mile, and repeat. I did 3 mile repeats, at 7mph which is about 8:30 a mile. That last quarter mile felt like fire! I shoved myself forward, pushed away the burning and tried to keep my consciousness present in my mind without settling into the strain in my body. Those minutes seemed to stretch on for eternity, but suddenly it was over and I had finished! I love that feeling when I finish a really good workout. I know I am doing something to raise money for NF2, making myself healthier, and finally losing the last of my baby belly all at the same time! Yes my baby belly is shrinking!

Now I am home and facing all of my Cinderella chores which I better attack before my hard-working husband comes home to a dirty house!

I'm not afraid of my own fears...

Some days everything slows down, and I’m covered in chubby baby hugs, inhaling the sweetness of their breath as I thank God for being blessed with my children. NF2 is a genetic disease, meaning that when I chose to have children I knew full well there was a 50% chance that my children would also have the disease. My son JT does, and my daughter Mica does not (Blessed be!) It was a difficult and personal decision, but I will say I believe life is for the living, and I refuse to live as the walking dead. We all take chances each day, and tomorrow is promised to not one of us. My children are blessed with two parents and a huge extended family that cherish and adore them. They will never want for anything, they will be loved and safe their entire lives. We will undoubtedly face days of illness and pain, but we will face them together, as a family. While I am full of hope, I am always realistic, and know I may one day be preemptively taken from my children as my Mother was from me. My heart aches at the thought of not being a part of their adult lives. I live in a state of perpetual fear that a Stepmom will help choose Mica’s wedding dress, as my amazing Stepmom helped choose mine. Again, I will be my Mother. I will wear the brave smile and tell my kids not to think of me, to move on as I will in the next life. Yes, it throbs deeper then a young broken heart, it eats at my soul with the harsh brightness of the Truth. My kids may not even remember these stolen sticky kisses, running in the rain, cuddling in the early mornings. These memories are the components of my soul, the fibers of the love in my heart. No one can take them and they make anything that may come worth every painful moment. What is now will always be, and what we have will survive as long as we have Hope. Always hope…

No More Water Slides!

Yesterday I was up at 6am, running just over 8 miles, jumping in an ice bath, and feeling very accomplished with the start of my day. My abs felt tight deep in the core, which was a sign I was correctly following the ChiRunning posture I was aiming for. Paul and I set out for Raging Waters just the two of us…

…Little did I know what was in store for me…

I should have known I could not get through an entire day of physical water slides without incident. I have always been accident prone, the scars on my knees attest to my supreme klutziness. At each slide I grilled the operator… “Has anyone ever died on this ride? Has anyone ever broken a bone?” The young lifeguards earnestly answered no, but I could see the lies etched on their faces. As I neared my turn on the Speed Slides I started to panic, my heart lurched in fear as I stared down the dizzying drops of the slides. Paul encouraged me and next thing I knew I was whipping around in the water, screaming my head off… “Paaaaulllll I haaaaate yoouuuuuuu!!!!!!!!” (I don’t mean it, don’t get upset now) In sheer terror I squeezed my eyes shut and felt the world drop out from under me, having studiously counted the drops while in line, after the second drop I took a deep breath and braced myself. I slammed hard into the water, my top flew up, and the world seemed incredibly far away. I started swimming for the surface but only felt concrete everywhere I reached. Somewhere in the recesses of my mind I remembered people on the crew discussing how vestibular nerve damage from the tumors we grow in that area can cause you to not know which way is up under water… a primal fear wrenched my entire soul and I became incredibly desperate to reach the top. Kicking, flailing, looking for anything to swim toward but surrounded by nothing I suddenly spotted Paul’s shorts. Within seconds he had pulled me up and out of the water and was staring into my eyes in urgent concern. I gasped, sucking in the precious air, dizzy, completely discombobulated. I choked out, “I didn’t know which way was up!” Having doubted my balance issues in the past and thinking them a huge cover-up for having had a few too many beers (or vodkas), Paul told me “I believe you now!” and hugged me tight to him. I was so incredibly shaken, nevermind that the water was only a few feet deep, that I was drowning as much as Little John in the creek on Robin Hood, I was completely lost under that water and was incredibly grateful Paul realized I wasn’t just messing around and pulled me out. The lifeguard was yelling at as to exit the pool, never left her stand or showed a slight bit of concern. I jokingly told Paul she was yelling "No Drowning! If you are going to drown, please exit the poooool!" As I dragged myself out like a drowned dog I could only say one thing… No more water slides!!

To grow a blog...

...you have to visit everyone else's blogs and attempt to regurgitate without duplicating. Short of visiting the library and picking up "Blogging For Dummies", clicking around is the best way to learn. All of the super neato popular blogs have all sorts of ads and buttons, I'm content with my amateur running blog but some people are so pro they get frickin paid. That's right, paid to stay home in pajamas and write self-indulgent rants against the machine. Those little ads and buttons actually generate revenue for some people. One of the blogs I love to stalk between runs is Motherhood Uncensored, and the chica who writes it came up with Blog the Recession. Just click below and check out some different blogs, maybe leave some comments. In the month of August with a recession affecting us all a blog visit can assist your friendly local blogger with ad revenues, not to mention validate their time spent expelling creative thought into the cavernous blogosphere. So check it out and bookmark the good ones, don't forget mine!

Propolis Bio30

At some point in the future I have no doubt scientists will cure NF2. Cure would literally mean a person no longer has NF2 after the treatment. As of now that is not possible. NF2 is a chromosomal disorder, meaning it is programmed into our DNA, and a part of every cell in our bodies. The best way we can fight the disease now is to find drug therapies to stop tumor growth. Currently the only way to “treat’ NF2 is by surgically removing tumors that are causing a problem, or radiating them. The procedures themselves cause almost as much risk as the tumor, if not more in certain circumstances. The tumors can grow anywhere, on and through any nerve, choking it out and causing loss of functions. It is common for a person with NF2 to become blind, deaf, paralyzed or have limited control of the extremities, have a loss of urinary and bowel control, an inability to speak and subsist on a feeding tube. All of this can happen in a single person over time from this disease. This is not an exaggeration, or an extreme example. My Grandmother, Uncle and Mother were all deaf, partially blind, bedridden and unable to control their personal functions for years before passing on. That is why it is absolutely critical that we raise funds for research, because nobody should have to suffer through these cruelties of nature.

There are several tumor growth suppression therapies being researched now that may have the capability to stop NF tumors from growing. Propolis is a drug therapy I am currently taking as part of a non-clinical trial. In a recent study mice were implanted with NF1 tumors and then treated with Propolis, the tumors were suppressed 90% in 100 days. Propolis is extracted from the resin bees use to build their hives, and has something in it called CAPE which has proven tumor fighting abilities. CAPE blocks the PAK enzyme which is responsible for the abnormal cell activity that leads to tumor growth. The specific form of Propolis I am taking is called Bio30, and it is available from Manuka Health in New Zealand for less then a dollar a day for treatment. Propolis has been used as an over the counter herbal remedy to strengthen the immune system for many years.

I have been taking Propolis for one year this month. Before beginning treatment I had a slow but steady progression of tumor growth on each biannual MRI. After 6 months of treatment my MRI showed no growth of any of my tumors. I am due for another MRI in the next couple of months, and will be sharing my results then.

If you are interested in Propolis treatment for NF1 or NF2 you should check out the “NF2TrialTalk” yahoo groups list. Trial Talk is the place to find information on all current drug therapies for NF, including the home of the Propolis Bio30 chart.

Everything in this post is from my own personal knowledge, and I have checked my facts as thoroughly as possible. I am still not a doctor, and if anyone has any further information please feel free to share it in the comments.

Shameless Daughter Promotion

My baby girl Mica won the Supreme Couture Little Girl title over at the Couture Baby Boutique!

Congratulations Mica!

Who doesn't love chocolate?

My good friend Sheila has helped me come up with another way to raise money for CTF! She is making yummy chocolate candies in the I Love You sign language handshape! They come wrapped on a stick and we are selling them for $2 each! If you live close to me you can put your order in here, and we will make arrangements to give you the order in person! You can buy 1, a few, a lot! They are soooo good, my favorite is the chocolate mint [:O] YUM.
You can learn more about my run and donate here: http://www.active.com/donate/nflongbeach2008/OHernan4

Thank you Sheila for coming up with this great idea!!

All Choked Up

As I watched JT kick his way through karate class and flipped through Vegetarian magazine, I knew it was starting… It always starts with a tickle in my lower throat, and I break out in a cold sweat in sheer panic. Glancing surreptitiously at all the possible witnesses I grab the bottle of water I keep at all times and quickly make my exit. As a few stifled coughs trip out people start to look, noting the speed in my pace I can see them all wonder…. Is she ok? Roughly shoving pass the door I look back at my husband who is watching me, worried, knowing already what is happening. I rush to the nearest bathroom, chest burning, chunks rising, and once inside the door unleash a ripple of shuddering throaty coughs. Gasping for air I cough feeling my throat spasm and contract as I race to the stall. I gag and heave profusely, my body expelling anything that could prevent it from sucking in the air it desperately needs at this point. Soon I am able to draw a sharp breath and sneak a greedy gulp of the water. The coughing continues, deeper in my chest, but slowly dissipates as I sip and ease my raw throat back open. I breathe deeply and go out to the sink, splashing my face with cold water, the mirror reflects my bloodshot eyes and ruddy skin. A scratchy cough haunts me as I slink back to my seat, trying to avoid the curious stares of those I pass. I sit back with my husband and wave off his concerns, I’m fine, this time. JT continues to practice, completely oblivious to my bathroom trip…

Unfortunately choking seems to be another side effect of one of my tumors I just have to learn to live with. Having a slight cold to begin with made last nights episode that much worse, the burning traveled down deep into my chest and only Nyquil helped me finally ease into a restful sleep. I’ve had swallowing exams, neurological exams, and my MRIs reviewed. There is no clinical explanation for these occasional choking spells. As frightening as the episodes are, there is nothing I can do besides staying calm and keeping water with me.

This morning Mica’s round chubby face and lopsided pigtails peeked over the blankets at me… I awoke with a lingering cough and a delicious tightness in my arms and legs. I did my first tempo run yesterday at the gym. I am only now beginning to work on speed and it was incredibly challenging to hold my race pace for 10 minutes straight. 10 minutes sounds so short but feels like an eternity when you are running all out. After the run I really pushed myself on my strength training, adding extra reps whenever possible and stretching deeply between machines. It was worth the exertion, I left feeling weary but renewed and worthy of my day off today. As good as running feels, nothing beats lounging around the couch with my adorable rugrats…