My Virtual Life

Busy busy busy goes life with children. I thought I would share some of my favorite extraordinary websites, blogs, and FB pages. They are a go to in my life and am hoping you will check them out. I have cooked meals, done a detox, found great gift ideas, created goals (made progress on them), gotten dish on celebs, shared health issues, and of course read great news articles and blogs written by such a variety of writers. So enjoy they are for everyone and especially all you parents. Here they are in no particular order:

All around great wellness information and a great on-line community:

http://crazysexylife.com//

How to stock your pantry--hit their UTube button and watch Pantry 911:

http://sporkonline.com//

Get your kids to eat better:

http://www.doitdelicious.com//

Again get your kids to eat better and make it easier for yourself:

http://www.dinneralovestory.com//

Set goals and achieve them:

http://giveme10.info//

If you loved Cookie magazine like I did you will love this:

http://www.facebook.com/pages/Momfilter/112956725389529

Food, fashion, and much more:

http://goop.com

Get your celeb green dish here:

http://www.ecorazzi.com//

Blog about all things compassion-- great recipes too

http://www.thekindlife.com//

News, blogs, and everything else-- forwards to my sister originate from here:

http://www.huffingtonpost.com//

Oh and of course our awesome website--soon to be relaunched

http://www.littlesttumorfoundation.com//

Give Me 10! Find Balance and Reach Your Goals.

"I am honored to have the opportunity to write on your blog. Your blog does all that is best about the internet -- unifying a far-reaching audience and creating a community. While I am not affected by NF, I will pass along a little about what I do, in the hopes that it is useful for you. I started a blog called Give Me 10! The 10-minute solution to find balance and reach your goals. The point of it is that we all have very busy days, pulled in countless directions, giving to so many. But there are ways to sneak in a little personal time into the brief (and all too infrequent!) free moments of the day.

In the midst of stressful times, it's easy to put personal time on the back burner. But we all deserve at least 10-minute for our own well-being -- 10 minutes isn't long enough to feel guilty, it's too short to feel frustrated, and it fits into the nooks and crannies of the day -- you don't miss a beat attending to the other obligations.

Too often, we feel guilty taking time for ourselves -- taking a bath, reading a book, laying down for a few minutes. But knowing that you're giving yourself a time limit makes it feel less like an indulgence. The same goes for the less savory tasks that are important to us but overwhelming -- cleaning the garage, getting our finances in order. We delay even taking these on because we know we feel like we need a whole weekend to handle them (and when do we have that?) and we don't know where to start. But if we wade into the job for just a few minutes, we realize it's not as bad as it seemed, and we can chip away at the project little by little.

The point of Give Me 10! is to simply "advance the ball" on our own personal goals just a little bit every day. Just getting out of our day-to-day for just a little while can really inspire calm, confidence, perspective. Somehow it soften the edges a bit on the rest of life.

If you want to get started, here's what I'd suggest...

- Pick a goal or two (think right brain/left brain; mind/body/spirit; think of the times you've said, "One day I'd like to..." or "I wish I had learned to..."; or tackle an item that's been on the to-do list forever)

- Write a mission statement for your goals (this is not meant to be work! It's just meant to help you clarify what you would like to happen -- it can and will change as you get into the work.)

- Think of what you'll do for 10 minutes on the goal today and tomorrow (this will help build momentum; and by the way, it doesn't have to be a big "to do" -- it can be "find the file" or "set up the card table" -- sometimes just finding the materials and creating the space is the hardest part)

I give some suggestions of ways to find the time for your goals on my website: http://www.GiveMe10.info/, and readers share their tips and tricks, too. I'd love to hear if you try it and how it works for you! Be well..."

Green Juice, Dharma Talks & California Beaches

This summer our family took a different approach to NF. The 6 months prior to the summer vacation were filled with PET scans, MRIs, surgery, pathology reports and needless to say STRESS. Stress on our NF child and his two siblings aged 5 & 9. So we rearranged some doctor appointments and took off for a month for CA beaches, Dharma talks and ultimately green juices. Packed tightly in the car we drove from the midwest to CA-- hitting Colorado mountain air with alpine slides and rock walls, Utah red rock hikes, and then SOCA beaches and the best thing cousins! We then headed to a family retreat at a Monastery in Escondido CA. There are no electronics, all vegan food, and some silence. This is a place where children blossom and parents get to connect ( I believe every parent on some level believes they are messing up). You get to listen to monks and nuns talk about the practice of compassion. Children sing, craft, nature hike and learn too about compassion. Panels of lay persons round out the dharma talks. You eat, clean and share with other families. We always leave with knowledge, calm and better prepared. In my case better prepared for the upcoming MRI. Tumors and MRIs tend to throw me into what feels like a tidal wave of worry that feels so gripping it is hard to breath. So I hope with my pack of dharma knowledge I will breath through the next one. Upon return to the Midwest I had a consult with none other than the ultimate positive healing junkie Kris Carr. I had to fess up our diet for a week. This was after a weekend in WI Dells land of hotdogs and french fries. We had a long discussion on tumor growth and nutritional therapies. She herself has stopped Stage 4 cancer from progressing for the past 7 years through a highly alkaline diet. She and a slew of others advocate upping alkaline foods to slow tumor growth and diminish inflammation. Stress being a big part of inflammation she too spoke of meditation as our monks in CA. So now I just need to put it all into practice this idea of creating balance while living with NF. MRI in two days small tidal wave-- a start. Oh and we drink our green juices (some of the time).

Community Involvement

Intro: Hello, my name is JuIie I am a student at FVTC and I am interested in neurofibromatosis also called NF because… I recently received an email about NF and I was surprised that I had never heard of it before and I want to take this opportunity to teach a little of what I learned through researching NF on the Internet.

I learned that it affects children.

What does NF cause: It causes tumors to grow anywhere in the body including the brain and spine. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions such as serious skeletal abnormalities, amputation and deafness, and significant learning disorders

How it is DX: NF is dx by five or more dime-sized light brown spots on the child’s body. Usually these spots are not seen on the face. There is no cure for NF although an early diagnosis can save a child from becoming disabled.

Where can I find additional information about neurofibromatosis type 1?

Resources about neurofibromatosis type 1 helpful written for the general public.

MedlinePlus - Health information (2 links)

Genetic and Rare Diseases Information Center - Information about genetic conditions and rare diseases (2 links)

Additional NIH Resources - National Institutes of Health (2 links)

Educational resources - Information pages (15 links)

Patient support - For patients and families (5 links)

Resources, which are designed for healthcare professionals and researchers.

Gene Reviews - Clinical summary

What other names do people use for neurofibromatosis type 1?

Neurofibromatosis 1/NF1/Peripheral Neurofibromatosis

Recklinghausen Disease, Nerve/von Recklinghausen Disease

I feel that public awareness of NF can possibly lead to a cure.

Thank you for your time,

Julie Oyen Nursing student

Dr. Kornberg and Nutrition.

By Allan Kornberg, MD

A groundbreaking new study funded by the National Institutes of Health and published in the Annals of Internal Medicine made national headlines yesterday as mainstream media outlets like CNN reported on its findings and gave Americans plenty of food for thought. Following more than 85,000 female and roughly 44,500 male subjects without heart disease, cancer or diabetes over a span of 20 to 26 years, the study explored the correlation between low-carbohydrate diets based on either animal or plant-based proteins and mortality rates, ultimately revealing the positives of vegetarian alternatives.

According to the study, subjects who consumed low-carbohydrate, high-protein diets centered on meat and other animal products had a 14 percent increased risk of dying from heart disease and a 28 percent risk of dying of cancer, while those whose diets emphasized plant-based proteins and fats had a 23 percent lower risk of succumbing to heart disease, as well as a 20 percent lower mortality rate overall. While no study is perfect, and all are subject to certain limitations, these numbers speak volumes about the potential of healthy plant-based foods to improve our quality of life.

As a physician who has long been aware of the good plant foods can do, the results of this study come as no shock. Nonetheless, it is always encouraging for me, and doubtless many of you, to see such awareness grow and result in an ever-expanding body of research that compels us to reflect on the foods we consume and consider choices that not only more positively impact our own lives, but also the world at large. After all, we truly are what we eat and the time has never been riper to embrace the power of plants – not only to benefit our health, but billions of suffering farm animals and our ailing planet too.

Discussion with President Barack Obama about Neurofibromatosis

THE WHITE HOUSE

Office of the Press Secretary

___________________________________________________________

For Immediate Release

September 22, 2010

REMARKS BY THE PRESIDENT

IN A BACKYARD DISCUSSION ON HEALTH CARE REFORM

AND THE PATIENT’S BILL OF RIGHTS

Brayshaw Residence

Falls Church, Virginia

11:59 A.M. EDT

THE PRESIDENT: Anyone else? I know it’s warm out here, but I want to hear from as many people as I can. Go ahead.

Q Hi. Thank you so much, Mr. President, for having us here. I want to thank you. I just have a comment. My son, Sammy, who was here, is seven and he has neurofibromatosis. I don’t know, have you ever heard of it?

THE PRESIDENT: You know, I’ve heard of it. But you should describe for us what that means.

Q It means that he had a spontaneous mutation on his chromosome. And he was diagnosed two and a half years ago. And it just basically means your tumor suppressor doesn’t work properly, so every nerve cell has the potential of becoming a tumor.

THE PRESIDENT: Which is pretty nerve-wracking for mom.

Q Oh, it’s unbelievable. And there’s a wide spectrum, so some people end up with minor complications but others have serious problems. And he’s already had surgeries and things of that nature. So I just want to thank you and the Secretary and congressmen and senators, because it’s life changing for a parent.

THE PRESIDENT: Well, Sammy looks terrific. I saw him running around here.

Q He is terrific.

THE PRESIDENT: And I’m just glad to give you peace of mind. Look, people ask me sort of how do I stay calm in my job. The reason I stay calm in my job is that every night at six-thirty, no matter how busy I am, I go upstairs -- I’ve got a very short commute -- (laughter) -- and I go upstairs and I have dinner with my wife and my daughters. And as long as they’re doing good, as long as they’re healthy and happy and running around and telling me stories about the crazy things that happened at school today, then there’s a certain baseline that just gives you that sense, well, I can take anything, right?

Now, the flipside is when Malia or Sasha get a sniffle, or an ear infection, or a scrape, or a bruise, I’m over there just miserable. And I still remember Sasha, when she was three months old, one night she just wasn’t crying right. As a parent, you start recognizing, that’s not how she cries. She wasn’t hungry, it wasn’t a diaper change. Something was going on.

So we called our pediatrician, and he said, “Well, why don’t you bring her down?” And this was in the middle of the night. This is like one o’clock in the morning. And he was willing to see her, and he pressed on top of her head, and he said, “You know, she may have meningitis; I want you to go to the emergency room.”

And it turned out she had meningitis, and she had to get a spinal tap, and they had to keep her there for three or four days. And the doctor was talking about if this didn’t -- if her temperature didn’t come down and if we didn’t solve this, she could have permanent damage to her hearing or other effects.

But I still remember that feeling of just desperation, watching the nurse take her away to provide treatment for her. But I was thinking, what if I hadn’t had insurance? What if I was looking at my bank account and I didn’t have the money to cover her? How would I be able to face my wife, and how would I be able to look in the mirror if I didn’t feel like I could somehow make sure they were okay?

And that’s what this is about, ultimately. I mean, we’ve got to make sure that health care -- our health care dollars are used smartly. We’ve got to make the system work better for consumers. We’ve got to make it more responsive. But ultimately, the thing that’s most important is, we’ve just got to give people some basic peace of mind. And I’m just so glad that I’m able to stand here before you and hear these stories, and hopefully it gives you a little more peace of mind. (Applause.)

So, all right, well, thank you, everybody. Appreciate you. And if anybody else has any questions, they can come up and we can chat in the shade here. (Laughter.) Because I don’t have to go right away, and maybe we can -- these guys will take some pictures. So thank you.

END 12:42 P.M. EDT

Juli Novotny --- Pure Mamas blogger--Smoothies and Popsicles.

Nutrition can be a very sticky subject when it comes to children and babies. They are some of the pickiest of eaters yet the most active {constantly learning new things, playing, running, swimming, jumping, falling, etc.}, and frustrated. Therefore proper nutrition is crucial for them.

Multiply the above by 10 and you have handicapped or ill child. These children are even more in need of nutrition and also that much pickier and more difficult to get to eat healthy food.

A really great way to pack in nutrition is with a blender and/or a popsicle stick. Fresh homemade smoothies are great because you can customize what goes into them. For instance you can add all kinds of local and organic fruits from the farmer's markets. You can make them really cold, really thick or not at all. You can also add very important supplements like Omega 3 oils, probiotics, even green powders and protein powders in small amounts so that the children won't even know it's in there.

If you child likes milk, add it. If your child is allergic or doesn't drink milk {mine don't} then add almond milk, lemonade or fresh squeezed orange juice and water as a base. You can also then add sweeteners or not, depending on your child's taste buds.

There are so many different kinds of things you can do with a blender that will amaze you AND your children. If you find a drink you and your child enjoys, then freeze it in a popsicle mold and eat it later while sitting in the sun.

I'm not going to go into which supplements are good for children with tumors or any other specific illness or disease because I'm not a doctor. But once you get the go-ahead for probiotics or algae or whatnot, ADD SOME DROPS OR TEASPOONS IT TO A SMOOTHIE.

MANGO PROTEIN RECIPE

- 2 cups Almond Milk

- 1 cup Frozen Mangos or any other fruit you enjoy.

- 1 Ripe Banana

- 1/2 c Green Juice {or greens powder}

- 1 Tbls Agave Nectar {optional}

- Rice Protein Powder {1/2 scoop}

- ADD PROBIOTICS OR FLAX OIL IF YOU'D LIKE

Mix in a blend until smooth. It should be REALLY creamy

tip: leave out the agave if you are giving it to little kids.

CANTALOUPE / WATERMELON FROZEN JUICE RECIPE

1 Cantaloupe {or watermelon}, ripe organic & in season

7 Ice cubes

1 Tbls agave nectar {optional}

Cut open the cantaloupe, remove the seeds and scoop out the fruit. Blend it on high for like 20 seconds. Then I put remained of ingredients in a blender and blended until it was smooth {with only a few ice chunks left}!

MY SON got mad at me and threw a tantrum when I told him to try it!!!! I said "just try it once and you'll be done" he tried it and then gulped the rest of it down. It was THAT good.

GREEN DRINK RECIPE

1 large slice (about 5 chunks) frozen pineapple
1/3c parsley or spinach
1/4 cucumber, peeled
1 juice of a lemon

1 sliver/chunk ginger root
1c fresh orange juice
1/2 dropper of liquid stevia OR 2 Tbls agave nectar

* any supplements you may need to add like say a protein powder?

BLEND TOGETHER IN BLENDER ON HIGH UNTIL REALLY SMOOTH WITHOUT CHUNKS.

If you can get your child to drink a small bit of this everyday you won't have to worry too much about "veggies" and eating their "green" foods. But of course it's always good to encourage eating vegetables and to get them used to eating "real" green foods.

POPSICLE RECIPE

2 large lemons
1/4 cucumber, peeled
3 Tbls agave nectar

1/4c water

BLEND TOGETHER IN BLENDER ON HIGH UNTIL REALLY SMOOTH WITHOUT ANY CHUNKS. Then add to popsicle mold and freeze. You can also do this with homemade fresh squeezed orange juice as well.

Have fun and remember to use fruits, vegetables and sweetners and liquids that your children already like to ensure they will drink it. You can easily add any greens like spinach or parsley or cilantro to a drink and mask it with the other dominate fruits or sweeteners or liquids.

Also remember to try new types of fruits. You never know, kids often don't like things the first time but then LOVE things the second or even third time around.

Good Luck!

Please check out Juli's blog at www.puremamas.com and her company at www.kookiekarma.com