Wednesday, December 31, 2008
Sunday, December 28, 2008
Wednesday, December 24, 2008
*Left my keys in Paul's car, and had to impose on our friends Amy and Bridget to drive us to the appointment and watch Mica since I had NO carseat!
*Arrived at the doctor's office, only to find they had canceled JT's physical appointment under the false assumption it had to be done by an MD, not the PA on staff at the moment.
*Got dropped off back at home, called the MRI place, found that yes in fact the physical could be done by a PA, called the doctor back, and had the rude and unhelpful nurse tell me that no, they would not squeeze him back in even though the entire mess was their fault! Excuse my language, but BITCH!
*Made an appointment at a local clinic, had JTs godmother Miena drop everything, come get us, drive to the clinic and wait 3 hours past our appointment time to finally be told....
For those of you who don't know, besides having NF2 and being visually challenged, JT has asthma and is allergic to eggs, milk, and dustmites. His teacher thinks he has ADHD, and he has motor skills problems (he is 6 and still can't swing correctly, and has problems writing)... but he is so damn smart and started reading at age 4, and would literally give the shirt off his back to a stranger. He is the sweetest little thing, and all of these obstacles will only serve to make him stronger, I will personally see to that myself!
Also, by the way, I came home to a fried network card and am typing this out on my dinosaur of a laptop. I can't front like I understand anything more than buying shoes on Zappos and posting pictures on Meetup, as evidenced by the fact that I used asterisks as bulletin points and have no idea how to do a HTML "list." I had my friend's husband come help me out and he was kind enough to keep me going on my old laptop while he gets me a network card.
Now I am off to play Spongebob Operation with Mica...
Hope everyone has a wonderful holiday and a hope New Years!!
Friday, December 19, 2008
Around the age of 1 my cousin Steven, J.T.'s Godfather, commented that J.T. was a bit cross-eyed. After slapping my cousin in the head I made an appointment with an opthamologist. Following a morning of eye drops and waiting, the doctor came in and began to write. He asked me if I had ever heard of neurofibromatosis. With those written words, my heart broke into a million pieces. How could my precious, perfect, beautiful son be carrying the same disease that had ravaged the lives of everyone I know? I prayed everyday, everyone I knew prayed everyday, yet God still found it necessary to allow this to befall my little angel. I couldn't breathe, I couldn't think, I really couldn't breathe... I started to hyperventilate. At some point I let the doctor know that yes, I knew what neurofibromatosis is, that I have NF2, and I was well aware of what I was being told.
The following days were a blur. Referals, MRIs, neurological exams, insurance claims. All things I had dealt with my entire life, I couldn't believe I was now doing thess things in relation to my baby. A blood flow exam of the eyes revealed J.T. was born with retinal harmatomas, tumors on his retinas. In his right eye the tumor blocked 80% of the retina, causing his vision to be 20/800, which is legally blind. In the left eye was another small tumor that was thankfully not causing any problems as of yet.
Every year J.T. will be followed up and seen by a neuro-opthamologist, have MRI's and be seen by a pediatric neurologist. So far each year there has been no growth, and his eye has strengthened to the point that he can see a bit more. Next Tuesday J.T. is having his annual MRI's and visit to Dr. Loudon, his pediatric-neurologist. All I can think is: Will this be the day the doctor tells me my baby has a tumor in his spine or brain? I was well aware from the first day I found out I was pregnant that he may have NF2, and this was the inevitable direction the disease would take, but was too self-involved and immature to absorb the reality of that risk.
Would I have changed a thing? Would I have been more careful? Should I have been? All I know is J.T. is the light of my life, he showed me what it means to be somebody's baby. Everyone is somebody's baby, and because of him I actually care about the world and myself. He is a beautiful person with his own purpose in life, and I am just grateful to be blessed with the gift of raising him. So would I have changed a thing? Never.
Wednesday, December 17, 2008
I have had no time to breathe, let alone blog about it this week. I even skipped the gym yesterday and have had guilt pains all night. I have a crying baby tugging at my arm, and 2 different Christmas parties to be at before noon...
Friday, December 12, 2008
Now that I am able to commit again I have set up a schedule for myself. Yesterday being Thursday, I ran intervals on the treadmill. Intervals are when you run a short distance, such as 400 meters, slightly quicker then your goal race pace. Then you walk, then you run it again. You repeat this 4-6 times, and increase the number of intervals every week. My goal race pace is a 10 minute mile. So I ran 6x400 meter intervals at 6.2 mph, with 1 minute walking breaks in between. I set the treadmill at a slight incline to make up for the fact that I was not running outside, the treadmill is easier and counts the miles a bit leniently.
After intervals, weight training, yoga and hitting my abs a bit hard I picked Mica up from daycare and dragged myself home for a protein shake. I am a bit sore today, but it's all just change in the jar...
Tuesday, December 9, 2008
Monday, December 8, 2008
Pictures will be up soon, I have to wait for my Dad to send them, I don't have a camera right now!
Friday, December 5, 2008
Thursday, December 4, 2008
Tuesday, December 2, 2008
Monday, December 1, 2008
Sunday, November 30, 2008
Now I have a little homework assignment to complete, my girlfriend Michelle who took some absolutley gorgeous photographs of my kids for me this week tagged me. So the 4th photo in the 4th file in my picture files is:
I'll post the photos Michelle took of the kids tomorrow, right now I need to go put up the tree with my kids!
Monday, November 24, 2008
That night I headed to my friend Darci's for her bday! (Wendy went too, don't want to leave her out! LOL) We stayed up late drinking and laughing. Paul and Darci were playing pool.... and then I woke up the next morning in her son's bed sprawled out next to JT! Good times!
This week is hectic, trying to squeeze in a 5 miler, tomorrow I am taking the kids to Discovery Science Center with my Moms group, then Wednesday I will be a cooking machine! Instead of FoTurkey Roast *shudder* I am making soyrizo and pepperjack tamales with my vegetarian masa! Some whole wheat stuffing and mashed potatoes with rice milk will round it out... can't wait to steal the bowl of fried artichoke hearts and gorge myself on them! They're made with egg... but it's Thanksgiving! And I mean I'm not even eating Turkey or gravy! I'm only human people... stop judging me...
Friday, November 21, 2008
Of course I lied to JT last night over dinner! My hypocrisy knows no bounds, apparently... Tonight we are going to Victoria Gardens for the tree-lighting ceremony and to see Santa! I made some off-hand comment about Santa being old, what was I thinking? JT asks me if Santa is dying, because he is old. Paul told him Santa will live as long as he believes in him. JT is too damn smart, he says "Why are there some people who don't believe in Santa?" Why is he so damn quick? Too smart for his own good. I told him that Santa has magic, and not everyone believes in magic. JT proudly says that he believes in magic, and hopefully looked at me and said, "Mommy, do you believe in magic?" To which I proudly lied and said "Yes, baby, I do."
Tuesday, November 18, 2008
A lot of people assume without meat a meal cannot be complete, I honestly thought this at first too! In time I realized there are a lot of things we already eat without meat. Cheese enchiladas? Lasagna? Beans are a quick and nutritious substitute for meat in tacos and burritos. Of course I could not survive without Soyrizo. I don't eat much soy anymore, too many concerns about the way it acts as nature's estrogen and could contribute to tumor growth. But the day I discovered soyrizo my entire (kitchen) world opened up. It tastes just like chorizo, I am not kidding, with no grease, low fat, low calories. I use it in tacos, burritos, chili, tamales. Every person who has come to my home and eaten something with soyrizo has then asked for my recipe. Ok, well no one has complained at least!
What's cooking this week:
1/2 medium onion, chopped (I use frozen pre-chopped!)
1 green and 1 red bell pepper, chopped
3 cloves garlic, chopped (I keep a big jar if mincled garlic and spoon out as necessary!)
Fresh chopped cilantro
1 package soyrizo
2 cans diced tomatoes (14 ounce)
1 can stewed tomatoes (14 ounce)
1/4 cup chili powder
1 tablespoon ground black pepper
1 (15 ounce) can kidney beans, drained and rinsed
1 (15 ounce) can pinto beans, drained and rinsed
1 (15 ounce) can black beans, drained and rinsed
1 (15 ounce) can whole kernel corn
Half a tall bottle of Newcastle beer
Tapatio to taste
1. Add chopped veggies and soyrizo to slow cooker and heat.
2. Mix the tomatoes into the pot. Season chili with chili powder and pepper, salt, seasoning salt and fresh cilantro to taste. Stir in the kidney beans, pinto beans, and black beans, add beer cook at low 4-5 hours.
3. Stir in the corn, and continue cooking 5 minutes before serving.
4. Garnish with shredded cheese.
This makes enough to last over a couple of days and goes great with Trader Joe's onion bagels!
If you make it come back and comment, tell me how you loved it!
Monday, November 17, 2008
Just to share:
Mica is now totally potty trained, and she is running around the house in Beauty and the Beast underwear bending her finger at me whispering Redrum Redrum.
Yesterday she walked up to Paul butt naked and in a deep voice said "I'm Daddy!"
JT says he is growing his hair like Goku from Dragon Ball Z, and I am supposed to know what this means..
Friday, November 14, 2008
I am an intelligent woman who is not afraid to be a nerd!
I am a compassionate and loyal friend.
I'm silly and fun.
I really like the golden tone of my skin.
My legs and booty look great from running! LOL
I ran a half marathon and continue to run!
I am a really good organizer and always step up and take charge.
I love animals, and have the self control to be vegetarian, and am a good enough cook to pull it off with a meat-eating husband!
I am a good Mom, I am very involved and loving with my kids.
Do you have a blog? List all the reasons you are fabulous and grab this button Kadi made! Don't forget to link back to me of course!
As I have said before I wont actively email fundraise each run, but I am going to be having an actual fundraiser next weekend in Rancho Cucamonga to raise some money for CTF! More details will be coming soon!
Monday, November 10, 2008
I also had to stop taking propolis for a month while I had my wisdom teeth out. You can't take propolis 2 weeks before or after surgery, something about the blood not clotting. So this week I get back on track with both.
It feels great to have that little pull in my calves everytime I walk, the burn in my legs when I lift anything, and that stiffness anytime I try to crouch. Everytime I wince a little I know I had a good run!
Friday, November 7, 2008
Tuesday, November 4, 2008
Friday, October 31, 2008
Thursday, October 30, 2008
That being said, I am super excited for the Fabulous Halloween Party today! My Mom's group is getting together for a costume party, complete with games, crafts, prizes and of course a pinata! Guess who got the pinata?
Tuesday, October 28, 2008
Next week I am getting a video phone! I met Bill at my ASL group, he said his wife reads my blog (hi!) and told me about how VPs can help deaf people communicate better and emote more than relay conversations. Now I just need someone to call, who else has a videophone?
Monday, October 27, 2008
Friday, October 24, 2008
So Wednesday Clara took Mica to school and comes back with this art project the kids did. I said what is it? It's a tooth? She laughed and said no, its a ghost! To which Mica says, Boo! Paul comes home and I ask him, what does this look like to you? He answers sperm. Sperm. So obviously this playschool project is some crazy psychological evaluation tool, everyone who looks into it sees into their sub-conscious. I threw it away, I can't possibly keep every scribble the child does, don't judge me! She actually goes into the trash and brings it to me and tells me NO NO! Which is ridiculous and a little bit genious of her. She has never cared before about her random projects, but apparently she recognizes the power she holds everytime she shows it to someone and reveals their innermost secrets.
Thursday, October 23, 2008
Tuesday, October 21, 2008
Monday, October 20, 2008
Paul went as DEATH, love the guyliner!
That's my BFF Adria! She went as Glinda the good witch/Princess/HomecomingQueen LOL
They had food, always a good thing!
I've known a lot of these girls for a LONG time!
Sunday, October 19, 2008
Tuesday, October 14, 2008
I finally recieved my MRI results! Let me catch you all up...
I receieved an email from my neurologist's nurse which said my MRIs showed I am stable!! WHOOOOOO! That means no growth! I have had no new neurological symptoms, and I am free to run and live for another 6 months at least! No needles, no surgery, no steroids, nothing!
Now it would be unfair to assume it is completely due to the Bio 30, because before Propolis I was younger and having babies. Pregnancy and breastfeeding trigger hormones that "could" trigger tumor growth. Over the last year I have obviously not had a baby or any pubescent hormonal surges. I still personally feel the Bio 30 is helping and will continue to take it!
Thanks everyone for the prayers and positive thoughts!
Sunday, October 12, 2008
The Hyatt was so gorgeous and we had a beautiful view!
I met this girl Jenny who has NF2 but was told she has NF1 and NF2, which isn't really possible! She is the sweetest thing and I will definitely be keeping in touch with her!
The course was beautiful and I passed the time thinking about the long NF2 journey so many of my family and friends have suffered through. I realized that without NF2 my life would be completely different, and I love my life, so what is is what is meant to be. I prayed and envisioned my Mom hugging me at the finish. I know she would be so proud. No, I don't believe she was watching. I can't stand to think she may still be attached to this life, she is somewhere so very far away from all of the pain of this world. But today a small piece of her ran 13 miles!
I have video of my "big" finish and will get it posted as soon as I can, blogspot wont let it load right now!
Paul was incredibly supportive, as always, and helped out with anything he could. He really motivates me to be a better person and while I was running I found myself praying. I was just giving thanks to God for all of my blessings, and I know Paul is a wonderful blessing in my life. He's pretty lucky to have me too of course! He is out helping a friend right now but has promised me a leg rub, glass of wine, and Desperate Housewives tonight! How lucky can a girl be?
My Daz came!!! He is really into sports so I loved knowing I made him proud by finally being athletic at something! I didn't even trip! He seemed really interested in the race and said 19,000 people raced, including an 80 year old man!
To top it all off Paul bought me a beautiful cloche with a bow at the hat store! What did you all really think I had left my girlie side behind?
Thank you so much to everyone who donated and supported me! This is the beginning, not the end!! I plan to run the half marathons in:
Las Vegas, December 7, 2009
Surf City Huntington Beach, February 1, 2009
Rock'N'Roll Marathon San Diego, May 31st, 2009
San Francisco Marathon, July 26th, 2009
I will only actively fundraise once a year, but donations for NF2 research are always gratefully welcomed. You can visit CTF for more information!
Saturday, October 11, 2008
On the bright side paul found me an adorable purple cloche with a bow on the back!
Friday, October 10, 2008
I have a busy day ahead of me, getting ready to leave for Victorville to spend the night with my Mother-in-Law before we head to Long Beach!!! Yeah! I am so excited! I will be blogging updates from my sidekick, so check back in over the weekend and come Monday I will be adding Long Beach Half Marathon to my tiny "list" of completed marathons!
Thursday, October 9, 2008
Wednesday, October 8, 2008
I used to have my MRIs done at Millenium Imaging here in Rancho Cucamonga. They would burn me a CD with all my scans to take with me to my neurologist appointment. In August of 2007 they sent me all the way to Newport Beach to take up my doctor's time with a blank CD! I was so irritated! Then I go back, and they give me a CD with only the brain scan! It took them 2 weeks to finally just send a correct CD with all scans to the doctor. The next time I needed MRIs in February of 2008 I went back, but I spoke to the office manager and specifically reminded them what needed to be done. AGAIN they sent an incomplete CD to the doctor. This was after I asked them to open the files and double check the CD before I left their office. They assured me all of the scans were on the CD, but they weren't!
So this time I went to Grove Diagnostics in Upland to have my MRIs. I told the MRI tech about all of the problems at Millenium Imaging, and she couldn't believe them either. Over 2 days I had all my exams done. Before I left I asked the tech to please make sure my old scans were sent over from Millenium Imaging so the radiologist could do a comparison in his report. This is completely standard protocol. A week later I speak to my neurologist's nurse, her office only received my thoracic and lumbar scans! Seriously!? Again!? I just couldn't believe it. I called Grove and they said they would send all of the scans immediately. I spoke to the nurse and she said she recieved more scans, but still didn't have the brain with contrast! So I go down to Grove myself and they are making this all kinds of difficult, supposedly they will contact the Doctor and send everything that needs to be sent. Why did I have to force them to do that to begin with? On top of it, I got my radiology reports, and the radiologist did not do a comparison! Millenium Imaging only sent over my brain scan. I went to Millenium Imaging and signed a release and hopefully now it will all get sorted out.
Why does it have to be so convoluted and difficult? As hard as it is to find a job, how do these people find jobs? You know you see them walking around with their jaw hanging open, eyes a bit glazed, and you just think who freaking hired these inept people? When handling people's medical information you would think they would be a bit more careful. I mean don't worry, no big deal if I don't know how many brain tumors I have growing right?
A lot of people have been asking me for an update and I will post here as soon as all of my scans are sent to my neurologist and reviewed.
Tuesday, October 7, 2008
I could have opted to have tried for an ABI when I had one of my VS treated before, before I lost the rest of my hearing. I just don't really know any people who have succeeded with an ABI at a level that warrants going through the invasive procedure. I would rather wait, and trust that one day the ABI will be improved and I will be able to hear in some form again. In the meantime I have to learn to accept long boring dinners where everyone's mouths move silently as their eyes avert from me, in rightful shame for completely excluding me. I have to learn to accept the voices my subconscious has created for my kids, and just hope that one day I hear them laugh for myself. Always hope...
Saturday, October 4, 2008
Today we'll watch Gone With the Wind... Paul has NEVER seen it! I know, we need to go watch it... right now!
Thursday, October 2, 2008
Today my friend Crystal is coming over and should have all the pictures from my bday! I will post them as soon as I have them!
Tuesday, September 30, 2008
Last night I lay in bed trying to sleep, thanking the Goddess for all my blessings. I am truly blessed, I love my family and my life. Out of nowhere it occured to me JT will be 6 next month. When both my Mom and I were about age 9 we each developed a tumor in our T spine. In only 3 years I may have to face the idea of JT having a tumor? Inconceivable. Completely unacceptable. My heart is breaking and my mind feels fuzzy. Just the idea, I shudder. My mind's eye traces a scar down his perfect back, marring the smooth tan skin between his shoulders. I see him still and in pain, crying. I can't let it happen. Did my own parents feel this? I am sure they did, and this is exactly why no one wanted me to have children. I was warned, the pain, the fear, the terror involved with helplessly watching your own child be put through things grown men would run from... Now here I am for myself, and it has not even happened yet and I am already breaking to pieces inside just contemplating the possibilities.
Monday, September 29, 2008
This weekend was so fun! Saturday night a bunch of my friends joined me to party it up at a local club. We drank, danced, and ran around all night. We closed that place down and Paul dragged me to the car and got me home safe. Yesterday we did nothing alllll day, which is the best way to spend a Sunday.
Now it's time to start the week, off to playschool, then a playdate... then shopping, cleaning, baking, then cooking, more cleaning, some serving, baths and bedtime, a little more cleaning.... then I will finally relax!
Friday, September 26, 2008
Thursday, September 25, 2008
Read all about it here: http://www.tvjots.com/2007/09/nbc-gets-with-program-and-offers.html
Wednesday, September 24, 2008
As you probably know I was born with NF2, a genetic disease that causes tumors to grow throughout my brain and spine. The disease has left me deaf… I can no longer sit around a table and talk with my family… I have not heard music in 5 years, my head is filled with ringing and silence… I have never heard either of my children laugh…
NF2 has also put me through several difficult and painful surgeries. Worse, it has taken my Grandma Norma, Uncle Eric and Mom from me all at unbearably young ages. Even my son JT suffers from the disease already, he was born blind in his right eye. The only way to give JT and me a healthy future is to support research into drug therapies to stop the tumor growth associated with this horrible genetic disease.
Often times when family is afflicted with a painful disease we don't know what to do. We want to help, but don't know how.
Tuesday, September 23, 2008
Monday, September 22, 2008
As much as I love all the attention from having a birthday, after all I am an only child, they seem to be more bittersweet the older I get. I am only 26 but since I turned 25 I have felt as though I am "middle aged" if not past that. I think of my Mom at this age, and remember how her tumors started growing completely out of control around this point in her life. She went from being an active typical young Mom, to being completely bed-ridden within a few very short years. I am my Mother, I have felt that way for a long time. If you compare our MRIs at specific ages, we follow similar growth patterns. I am doing everything within my power to break the cycle, to stop the growth. I'm taking propolis, eating healthy (fat feeds tumors) and running to keep my body strong and raise research money at the same time. There is not much more I can do! I take that back... I can hope. As long as I still have hope, I am still winning the battle. So Happy Birthday to me, and "many more..."
Thursday, September 18, 2008
I finished the 2nd half of my MRI's today. It was so incredibly uncomfortable staying completely flat and still for 45 minutes straight for the thoracic study. My pace started to quicken and I glanced around the tiny tube which suddenly seemed infinitely smaller then when I had first entered. I knew there was nothing to be done, and no reason to panic, so I just gently breathed in and out, and willed myself to relax. I dozed off and on, lingering somewhere between the realms of dreams and consciousness, the mat vibrating harshly and numbing my thoughts. Suddenly it was over as quick as it had started, and I found myself stumbling out into the daylight to face reality. Dr. Duma will have results early next week, and I pray I have had no changes that would explain the creepy heavy feeling that has worsened throughout my entire left side. I'm drained today, tripping around the house, forcing myself to smile as I help with homework and serve up leftovers. A glass of wine and a good book call to me, but I have to wait until after bedtime, definitely don't want to be Drunk Mommy. At least I have another 6 months before I have to have another MRI, that is always a good feeling.
Monday, September 15, 2008
Me and Virginia at Knott's Berry Farm!
Friday, September 12, 2008
Today I had my lumbar spine and neck MRIs. I had a really awesome tech who was amazingly friendly! I always have to deal with supposed professionals who eye me cautiously because I am deaf but can speak as a hearing person. What reason could I possibly have for pretending to be deaf? The girl took me in and was ready with paper and a pen, being very thorough and making sure I was comfortable. After my MRIs I asked her to be sure to request my previous MRIs from the last MRI place I had been (a whole 'nother story!) so that they could compare my tumors, she chirped happily that it was already done! You have no idea how amazing it is to come across somebody in the medical field who actually acts without being instructed, it was great to be the patient and feel cared for!
I will have the second half of my MRIs next Thursday and then wait patiently for my neurologist to review my scans. Pray that I have had no growth and the Propolis is working! I don't know how to respond if it isn't... I spent the rest of today running errands but feeling very lethargic, MRIs are not painful or even intimidating to me in any way, but somehow they always leech all of my energy. I stumbled through the day with the kids and am looking forward to Paul getting home momentarily and sitting down to a big bowl of spaghetti squash, and definitely a glass of wine!
Wednesday, September 10, 2008
I am still $75 away from meeting my fundraising goal! Even if you can only donate $10, that puts me that much closer to achieving my self-imposed quota! Visit my fundraising page: http://www.active.com/donate/nflongbeach2008/OHernan4