Take What You Want Tuesday!

My two-year old was hanging half upside down out of the shopping cart, while my five year-old was running up to the chocolate cereal. "PLEASE MOMMY? DADDY would let me!"

Sometimes I just can't resist saying no. It's like my reflexes seize up and I get intransed in my children's cuteness. "Alright, put it in the cart." He runs and slams dunk the bag of cereal, counting '20 million extra points', for knocking Brooklyn over and making her cry.

We continues our adventure, avoiding the candy and toys aisles....A simple "Ohh those aisles are closed for cleaning" seemed to work.

We passed by the bulk candy section, where there were about three children gathered around the gummy worms. I could tell immediately what was happening so we heading in closer to watch how this was going to play out.

I, myself have NEVER taken candy from the bulk candy section (hehehe)

When Riker and Brooklyn caught site of this wall of candy-heaven, their eyes lit up, and their mouths hung open! "WHOA Mom, look at all that candy! We NEED to get some of that!" Riker says to me. My eyes were still fixed on the three children who I just knew were going to get nailed for grabbing and gulping the worms.

I lifted Brooklyn out of the cart and told my kids that they could have ONE giant scoop, of whatever they wanted. As they headed over to the candy, a store worker came over and said "Hello....what's your favorite candy?" Riker thought for a second and blurted out "GUMMY WORMS!!!" Brooklyn, managed to get out "Chocolate Numm Nems (m&m's)!" The worker told my children , after winking at me, that they could have one big handful of any candy they wanted...I looked over at the three children, who were now walking to the end of the aisle, licking their fingers and giggling. "THANK YOU CHRIS!!" the children yelled.

My kids were ready.....They were built for this! Hands extended, Riker flexed his fingers. The store worker, Chris asked if they were ready. "YES!" they both screamed! Poor Brooklyn and her short, chubby little fingers dove into the bin and managed to pull out 6 M&M's! Riker on the other hand dug deep and pulled out about 30 gummy worms.

Chris helped the kids place the candy in bags, added another "handfull" to Brooklyn's and told us to "enjoy!" How was I to know that this was "Free candy Monday?!" I was half confused, half impressed with this little concept, and also wondering how many other chubby little fingers had dug deep for their candy, as I looked at my own, gulping down theirs.

The kids were so happy though! "Look at how much I got Mom!" Riker says to me. Brooklyn now sitting in the cart, happily mouthing her chocolate covered fingers.

The rest of the shopping trip went without any crying or begging....Not that I condone this kind of thing EVERY time, I thought once in a while....sure.

Neurofibromatosis

Neurofibromatosis Awareness Month

This whole month has been filled with bringing forth awareness about a disorder that is not well known. Very few doctors I have come in contact know much about it, and friends and family know even less.

Many people with Neurofibromatosis, suffer in silence, their pain not acknowledged, their symptoms often ignored.

I often go to the doctor complaining of headaches. After an examination, one doctor gave me the diagnoses of migraines....but I knew I was dealing with something far more complicated than migraines.

It took several visits, for me to finally convince my doctor to refer me for an MRI. A week after my first MRI, I was diagnosed with NPH (Normal Pressure Hydrocephalus) and a Lipoma (brain tumor) I was also told that a small piece of my brain was coming down through my spinal opening.

If I was younger, a shunt would be the resolution to this problem, but both my Neurologist and Neurosurgeon indicate that a shunt surgery could do more harm than good.

Some statistics have stated that as much as 23 % with Neurofibromatosis also have some form of Hydrocephalus....Most go undiagnosed, until they are referred for a MRI scan.

For me, my hydrocephalus gives me daily "pressure" headaches. They never seem to go away, and often have peaks or times when my pain is not controlled by ANY medication. My vision and coordination is also affected.

Last year, I attended a SMALL NF symposium here in Spokane, where Dr.Judith Martin spoke. Not only did this "DR" compare living with NF to living with freckles or a large nose, she told everyone in the room, that a baseline MRI was not necessary for NF patients.

This information was not only WRONG, it was very offensive! Having Neurofibromatosis and having freckles is not the same-or even close. I often wish I was as THRIVING then, as I am now. I would have stood up and told this doctor off.

Also if my daughter Rachel, who is 7 yrs old, with NF1 did not have a baseline MRI, we would not have discovered the basal gangelia tumor, and many other issues going on in her brain, that were not symptomatic.

If not for me begging my Drs for a baseline MRI, I would have been left undiagnosed of my Hydrocephalus and brain tumor.

I have no idea where this doctor got her information, or the basis behind her beliefs, but it just goes to show you how misinformed so many people are about Neurofibromatosis. Even doctors do not necessarily know best.

NF Awareness goes far beyond family and friends. NF Awareness, must reach far further. Please, if you or someone you love is dealing with Neurofibromatosis, help by talking to people about it and ask questions!

www.ctf.org

Strange Dream I had

I had the weirdest dream the other night. I was being chased through thick and long grass by very large ants. (I think there were SIX of them at first *ha ha)As I was running, I kept looking back and seeing more and more ants. My heart was racing and I knew I was never going be fast enough to get away. One last slow motion look behind me and I fell into what seemed to be the anthole.

As I fell, I was grabbing for anything that would stop me from a very painful "THUD" when I hit the bottom. That THUD never seemed like it was going to happen, and I kept falling and falling. I began to look around me, at the walls of this eternal trap, and I saw flashes of my life.

These flashes did not make me feel happy, I remember thinking that I was perhaps falling into hell. Some of he images on the walls, were of me and my mother...Her anger and sadness was a big part of my life, and I hid most of my own feelings, fearing I was cause more damage to my mom.

More images flashed, of me growing up...dating....being rejected...taken advantage of. I began to cry out for someone to help me....

"THUD!!" I smacked the bottom of this hole with pounding force. But it didn't hurt. I looked up through this hole I had been falling down....The images were changing....I saw my children, marriage and playful times.

I didn't understand why this was happening to me, and even saw myself question what was going on.

A light began to fill the anthole and I was "lifted" back up through to the top and outside. Then I woke up....

I kinda took a lot from this dream....

1> Never eat anything REALLY sugary before u go to sleep

2> I am REALLY overwhelmed with stuff going on

3> Hitting bottom is sometimes necessary in order to truly understand how blessed you are--and the good and bad times make up a life lived....never a life wasted.

NF Awareness

WOW, NF month has sure taken off! At least on FaceBook. There are so many who are contributing to the information being put out there. Bravo!

NF month has been crazy for us....last week, at my kids' school a teacher who saw my article in NW Woman magazine came up to ask me questions about it. Confused because she had heard that NF was 'The Elephant Man Disease' she said..."You don't look like you have Neurofibromatosis."

I just smiled and gulped down my extreme frustration that this disorder has been WAY misrepresented....and asked her if she wanted to see how NF affects me. She of course said "sure"....so I lifted off my shirt (something way out of my comfort zone...but this IS NF month after all)

My tumors were "hidden" under my shirt, but my attitude about having NF is something that has grown faster and stronger than any of my growths. This teacher looked at my back and front and raised her eye brows..."I had no idea", she responded.

And THAT my friends is what bringing forth AWARENESS is all about!

I know having Neurofibromatosis isn't something you want to go scream from the mountaintops, but that may be what it takes, to be heard.

Yesterday was awesome....I met with a Dr who is my children's allergist (I have no idea if NF and severe allergies are connected--but this Dr was VERY interested in hearing about NF) He told me he only had one other patient who has NF, and admitted he was totally clueless about this disorder.

He spent his lunch hour just sitting there asking ME questions and taking notes, I swear I wish I could have videoed this! I was some-what tongue tied --because I was excited about this opportunity to talk to someone who was actually listening!

NF Month is going to make this ripple affect....I just know it! Make a point to talk to someone about Neurofibromatosis! Turn it Around and TEACH!

Un-Freaky Friday

If someone told you, your whole life, that the grass was blue and the sky was green, you would believe it, because you wouldn't know any different, right? Well that would be correct until someone came up to you and said "The Sky is really Blue, not green." You would start to question everything you have been told.

Yesterday Neurofibromatosis was featured on a top talk show that reaches millions of viewers, worldwide. Oprah has never been a favorite of mine. I feel she selects stories more to gain popularity than to spread awareness.

Mentioning "The Elephant Man Disease" and Neurofibromatosis, is not only "Offensive" IT'S WRONG!

http://www.oprah.com/oprahshow/Living-with-Neurofibromatosis

If had never heard of Neurofibromatosis before, and sat and watched Oprah's show, I would be led to believe 1) That ALL people with NF look the way Ana does (bless her heart) 2) NF is only diagnosed through a genetic connection and 3) NF is related to the "Elephant Man Disease"

If someone -- especially someone as well known as Oprah is going to cover "Living with Neurofibromatosis", what they really need to do is get a variety of guests and disclose the true facts of life with NF.

Hey Oprah, did you know that half of the 100,000 people living in JUST the USA with Neurofibromatosis, got diagnosed through a "Spontaneous Mutation"?

Did you also know that Neurofibromatosis is HIGHLY variable, affecting those diagnosed in MANY ways. With some people, you would never know they have NF, others are affected like the young woman on your show....with many many in between.

Lastly, Joseph Merrick had Proteus Syndrome, deforming and twisting his body, making him know as 'The Elephant Man'. If you and your producers had done proper research, you would have learned, just by 'googling' Neurofibromatosis, that it is NOT that same condition Joseph suffered from.

There is so much more the media can do to help spread the word and educate the world. I find it sad when NF families reach out to the media, only to have no response, because their case won't raise the ratings. But what the media fails to realize, is that, if they did a show, showing everyday NF families, it would not only boost awareness, it would in fact be a highly rated topic!

Thriving Thursday

Science Fair!

Off she goes...THRIVING with NF! My bright, smart, beautiful young lady! I'm so proud! We worked on this till about 10pm last night, putting on the finishing touches.

She asked me "What if I have to give a speech about NF?" I just told her to be herself, honest and true."

She proudly went to school, holding her science project....Not ashamed at all, to expose her brain tumor and story about living with Neurofibromatosis!

Thanks to all for your wonderful ideas for this! I am sure it will be one of the projects that is talked about for years to come!

BAILEY is THRIVING with NEUROFIBROMATOSIS!

May is NF Awareness Month!

There's no better way to kick off Neurofibromatosis Awareness month than to have a full schedule of MRI's, blood tests, Neurologists, Ophthalmologists, ENT's and full on stress! :)

'NF' has taught me a lot, most importantly....that you can count on NOTHING! Predictability does not exist, when you are dealing with ANY disorder, not to mention, one whose variability is so extreme, like NF.

I have had many doctors try to tell me what to expect, and how things will turn out, only to have it go entirely a different way. No doctor...I don't care how much schooling or training, should ever label you or throw you into a box. Each person should be treated according to THEIR needs, not some needs listed in a text book.

Take for example Bailey....14 yrs old, never had NF complications, except for learning challenges. Drs, had no reason to concern themselves (and I didn't either) that there was a tumor, silently growing on Bailey's auditory nerve.

Bailey's first MRI, would result in a scurry of doctors trying to figure out what kind of tumor this is...and trying to convince me that it's THIS, when I know for a fact it's THAT! Textbook rules do not work all the time, and I'm tired of doctors doing this to us!

Neurofibromatosis for me, would leave me undiagnosed until after 5 of my children were born. The massive symptoms I was having, was "All in my head"....Gosh if those drs would have just listened to me! We would find out, literally....It WAS all in my head! Diagnosed with enlarged ventricles, a brain tumor and hydrocephalus at 34 yrs old!

This is NF Awareness Month. Let's get the word out about this very serious, yet way under talked about disorder!

Neurofibromatosis 1

The most common features of neurofibromatosis are the skin lesions called cafe au lait spots. These are flat, smooth, medium to light brown irregularly shaped spots than can occur anywhere on the skin. Many people have one or two cafe au lait spots, and these are often called birth marks. If a child has six or more cafe au lait spots measuring at least half a centimeter (about a 1/4 of an inch), then he or she should be monitored carefully to see if he or she develops any more signs of neurofibromatosis. A second skin symptom is freckling that appears in places not usually exposed to the sun like the armpit and groin.

After the age of three, many children will develop Lisch nodules in their irises (the colored part of the eye). These can be detected by an ophthalmologist using a special piece of equipment called a slit lamp. These growths do not affect vision.

Another symptom of the disease is the development of neurofibromas, soft fleshy tumors just under the skin. Neurofibromas can also develop deeper in the body. A neurofibroma can be large and have many finger-like projections, called a plexiform neurofibromas.

Most people with neurofibromatosis do not develop neurofibromas until puberty. Because neurofibromas can occur anywhere in the body, there are many possible complications from them. Sometimes these tumors can become malignant (cancerous) or they can affect vital organs. One complication is the development of a tumor, called an optic glioma, along the nerve going to the eye that can lead to blindness, unlike the Lisch nodule. A person can have a neurofibroma without having neurofibromatosis. Many neurofibromas, however, are indicative of neurofibromatosis.

Deformities of the bone are also associated with neurofibromatosis. For example, children can develop curvature of the spine (scoliosis) or an enlargement of a bone in the arms or legs leading to a leg length discrepancy. Other bony defects can be bowed legs and thinning or absence of the bones forming the eye socket. A large head is also sometimes associated with neurofibromatosis.

Approximately half the people with neurofibromatosis have learning disabilities, including attention deficit disorder (ADD), ranging from mild to severe. Learning disabilities are about five times more common in people with neurofibromatosis than in those without the disease.

Neurofibromatosis Type 2

In Neurofibromatosis Type 2, there are not as many physical signs of the disease. People with Neurofibromatosis Type 2 do not have multiple café au lait spots, Lisch nodules, or bony deformities. They may have a few café au lait spots, however. People with Neurofibromatosis Type 2 have a kind of tumor called a neuroma or schwannoma. These tumors affect the nerves that are responsible for hearing and balance. The first sign of the disease is often ringing in the ears (tinnitus), hearing loss, or difficulty with balance when a person is in her teens or twenties. Although only one ear may be affected initally, eventually both ears will be affected in most people. About 90 percent of people with Neurofibromatosis Type 2 will develop these tumors in their lifetimes. These tumors can occur anywhere in the body.

In addition to schwannomas, patients with Neurofibromatosis Type 2 are at risk for other types of tumors, called gliomas and meningiomas, that are found in the brain. These tumors are usually not cancerous in that they are not likely to spread to other parts of the body, but they can cause significant problems depending on where they are located. People with Neurofibromatosis Type 2 are also at risk for a particular kind of cataract that makes vision cloudy or dim.

Please---If YOU or someone you love is affected by Neurofibromatosis, talk about it! The best way you can help, is to spread the word! Knowledge is power.....

Kristi--Always here, always fighting for treatment/cure!