Tuesday, May 24, 2011

YaY, A Blog Award!

I LOVE hearing back from people who read my blog.  It helps me know that I'm not writing to the empty, darkness of space.
Thank you Kelly for giving me and Bailey this thoughtful blog award!  When I told Bailey that she received another blog award, she lit up and smiled! (the first smile I have seen for a while)

So, in order for me to accept this award, I have to do list 7 random things about me, that you may not know...I will do my best....But I have to say that I was VERY impressed with Kelly's 7 random things...Well Done!


Numero Uno
I still have my collection of Garbage Pail Kids collector cards..  I was OBSESSED with these things, when I was a kid, and have MOST of the series and they are in good condition.  When I look at these cards, I wonder why I liked them so much...But anyone who TRULY knows me, can probably tell you a few reasons why. :)~

I LOVE the new twizzlers that are sweet and sour.  I am addicted to anything sweet and sour, and THESE ARE YUMMY!!!!!!

Ive almost died a few times!  Seriously!  I drowned when I was about 5 and was saved by my cousin, who is a few years old than me.

I love scary movies!  I am also a HUGE Stephan King fan, and could watch his movies all the time!  This LOVE, kinda drives my husband crazy....since he is a more sci-fi kind of guy.

I am deathly afraid of speaking in public...but LOVE to talk to people about Neurofibromatosis!  I recently gave a key note to the Toronto NF group, and I was amazed at how much I loved speaking about NF!

I can GUT, Scale and cook my own fish.  I also LOVE to camp.  The really roughin' it type of camping...No motor home for me!  I love to get dirty

I have met many movie stars, including Michael Landon, Judith Light, Punky Brewster, the entire cast of the tv show CHiPs, Peter Scolori, Kim Fields and many many others!

Again...THANK YOU to Kelly, for this blog award!  You are awesome...and I am proud to know you!

Monday, May 23, 2011

The "No-Rules" Rules for Neurofibromatosis

When I went to Toronto, I had the privilege to meet Patricia Birch.  She is a research scientist at the University of British Columbia, in Vancouver.

She talked about the controversial topics, that no one really wants to hear.  The "no-rules" rules that Neurofibromatosis can, and oftentimes does take.

I know for me and my family, we have broken all the rules that  NF was supposed to have.  There is NO DOCTOR, no matter how much training they have, that can predict the course that Neurofibromatosis will take.

From things like Drs. not scanning for optic gliomas, after the age of 8...because "supposedly" these tumors don't present themselves after a child is 8.  My son is 13 years old, and had "clear" MRI's until his last one a few months ago, that not only showed a brand new optic glioma, but also plexiform tumors along his spine.

I have had to push for yearly MRI's and fight for insurance to approve them, because of the doctors feeling that it is unnecessary.  I am glad that I have pushed back, because without the MRI's we would not know, about the silent tumors that are very much a part of my children's brains, not only with my 13 yr old son, but also with my 15 yr old daughter, who is now receiving chemotherapy for tumors that had no obvious symptoms.

Who will fight for your children, if you don't?

I know that it's not easy to stand up to your doctor.  I know that every time I go into the doctors office, I will face a wall, that is not easy to climb.  The doctor is the one with all this education and training...who I am to question them?

But what I have learned, is that doctors do not know everything.  We need to go to them, and respectfully inform them about our concerns.  Make them hear us.  Don't take no for an answer, if what you are dealing with gets pushed aside.  YOU ARE WORTH MORE, than to just be dismissed.

I get the craziest looks from doctors, when I bring up concerns that I notice with my NF1 children.  At our 6 month dental cleaning, I had all SIX kids in dental chairs, and I asked the dentist if she knew of the connection between Neurofibromatosis and dental issues.

Her eyes squinted and she had this look of, "YOU ARE NUTS LADY!"  I went on to explain how I had participated in an NF study proved that people with NF, have a higher rate of decay...and a change in the boney structures of their jaws.

Now I am sure, that if one wanted, they could blame EVERYTHING wrong with their lives on Neurofibromatosis....but there ARE studies that prove that EVERY cell in the body is affected by NF, meaning NF can disrupt the growth of any part of the body. 

The point of this blog post is not to scare you into believing that every ache, every growth, every cavity is because of NF....But instead to inform you to just be aware of your body...of your child's body....and if something isn't right, get your doctor to thoroughly check it out,and send you to the proper place to get it treated.

Don't buy into a set of rules, because life itself, doesn't have rules.

And, several of the lesser known manifestations CAN be treated, before they become problematic.  No one can predict who will develop what, but an awareness has the potential to help people understand to stand up and be heard, when something isn't right!  

and of course

Thursday, May 19, 2011

E.A.S.Y. Way to Thrive (part 4)


Last but not least Y....For YIELD.  Yielding with NF has nothing to do with traffic rules.  Yielding DOES NOT mean, allowing others to pass you by....But I am talking about yielding  to your STRENGTH!

Yield to the reality that YOU ARE BEAUTIFUL

Regardless of cafe au laits, bumps, plexiforms--Whether they are hidden under your clothes, or displayed to the world in all their glory.  

YIELD to the possibility that you can be whoever you want to be!  Your children can be whoever they want to be, regardless of Neurofibromatosis!

I know I come off real motivational, and I know that it annoys A LOT of people, but know this...I would much rather be annoyingly motivational and positive, than to live my life angry, depressed and afraid.

My hubby is a motivational speaker....and I have spent YEARS blocking out his positive attitude platitudes.  I focused on everything that was wrong in my life.  I felt that since there was nothing I could do to stop NF from happening...why bother trying to be happy it?

It wasn't until I YIELDED to the fact that not only was I hurting myself by building a wall around my NF with my own fear and ignorance, I was hurting my children along the way.  I DESERVE BETTER!  THEY DESERVE BETTER!  YOU DESERVE BETTER!

Thriving with NF isn't always E.A.S.Y. but once you take new actions...positive actions, you will be amazed at how your attitude will transform!

Educate yourself

Take Action and watch your Attitude change

Share positively and lovingly with others

Yield to your new found THRIVING life...believing you are good enough to have it!

And most importantly...

Wednesday, May 18, 2011

The E.A.S.Y. way to THRIVE (part 3)


Education and Attitude are great...but what are they, unless you share your knowledge and attitude with the world?  At least share with your friends and family!

When faced with ignorance, or judgement, do not turn away.  Share.  Share who you are and what you live with everyday.  Share lovingly, with a child that points in your direction.  Share respectfully with doctors, who need to understand more about you and your life.  Share openly with each other, so we know we are not alone.

We all know 1 in 3000 births are affected by Neurofibromatosis, and yet NF is barely recognized by the general public or the mainstream media. How many of you watched Oprah Winfrey call NF the Elephant Man’s disease? You might not like this - but its not just Oprah’s fault she doesn’t understand NF - its OURS. If we want the world to recognize us, raise money to fund research to help us, to understand and accept us - we have to SHARE ourselves with them.

Once we educate ourselves on NF we can take the Action necessary to educate others. To help our families understand us more. To open the eyes of doctors who don’t specialize in NF to treat our symptoms seriously, and get us the treatment we need - even if they didn’t know treatment existed before we walked into their office. 

How many of you would consider sharing with the media? Writing to your local paper or TV station to offer them information about NF? Not everyone wants to take it that far - but would you be willing to start with your friends, your co-workers? Maybe your church? At the very least, start with each other. 

After all, MY NF is different than YOUR NF. Building a network of NF friends who understand what we are going through can be our most valuable defense against the temptation to isolate ourselves, and the rampant depression seen in the NF community. 

When we open up to sharing ourselves at any level, we gain strength, we spread awareness, and we let the world know we aren’t going to be pushed in the corner any longer....and most of all we THRIVE!

Who are YOU going to share yourself with today?

Thrive On!

Tuesday, May 17, 2011

E.A.S.Y. Way to Thrive (part 2)


Yesterday, I talked about Education being the first part in changing how you look at your struggles.  Understanding and learning about what you are dealing with, helps so much in giving YOU the control and not allowing your condition to control you.

While education is important, it is nothing, without a positive attitude.  What good would knowing all about your condition do, if you have a really bad attitude about it?  How would negativity help in making you feel better?  

I grew up in a very toxic environment, where Neurofibromatosis was an awful swear word, that was never to be brought up.  My mother still carries with her, a tremendous guilt for 'giving' her children this horrible, unpredictable "curse".

I watched my mom, and how she treated her own NF and how her fear and negativity was spread around, affecting everyone in her path.  It was no secret that my mother was scared to death of NF.  She allowed that fear to control her, blinding her from the fact, that she actually had TWO children affected with NF.

For years, I wondered, what was wrong with me.  Why were my symptoms being ignored?  Why was I showing the same signs my brothers was, and no one was doing anything about it?

Attitude.  A fearful attitude will keep you from Thriving, plain and simple.  A depressed outlook, will limit the possibilities that are within reach for you.

YOUR attitude and YOUR actions are the only part of your life with Neurofibromatosis that you can control.  I know that we are brought up in a world who encourages us to blame how WE feel on anything we can find.....Blame God.  Blame the Doctors.  Blame our parents....

But when it comes down to how we REALLY feel....It's not the people around that we can truly blame.  It's the person that reside in our hearts...and the actions WE CHOOSE, or CHOOSE NOT to take.

I didn't start out 'Thriving with Neurofibromatosis'.  I made a choice, to not live in the negativity anymore.  I made the choice to break the cycle and DO SOMETHING, instead of sitting hopelessly by waiting for NF to do something to ME.

I don't sit behind a curtain of shame and fear.  I put myself in front of the world.  I share my struggles, my triumphs.  My good days, my bad days....In hopes of making a difference.  These ACTIONS changed my ATTITUDE.

When I find my attitude suffering the most, is when I choose to sit and do nothing.  Thriving or not....I still find myself there.  I just choose to not stay there.  It's when you choose to get up from that spot, and move on to the next moment in your lives, when you choose to take ACTION... you truly THRIVE.


Monday, May 16, 2011

E.A.S.Y. Way to Thrive


It's not always easy getting up to face a new day.  Hearing "new" news of something else NF has done to our family seems to happen every other day.  But I have found that if I focus my time on everything that NF is doing to me and my kids, I have a hard time finding ways to beat the welled up anger and frustration I have.

In my book, Thriving with Neurofibromatosis, I share stories of my childhood, while watching how NF affected my brother and my mom.  Never once believing that NF would also come to haunt me.

Ialso outline the steps I took, to help myself go from being afraid of NF, to embracing my own diagnosis, as well as the diagnosis of 3 out of my 6 kids.

The first step to truly "getting" my NF, was EDUCATION.  Without a full understanding of Neurofibromatosis and all of its unpredictable symptoms, there would be no way that I would even begin to understand that I could move beyond the diagnosis.

Every single day, I make the choice in how I will live my day.  Minute to minute.  Day to Day.  I am constantly learning new things about Neurofibromatosis and how it affects everyone who is diagnosed in different ways.

There is so much information (and misinformation) out there, and it's our responsibility to seek it out.  Educating yourself, puts you in a place of greater control.  The learning never stops.  We have to take ownership and become caretakers of our own disorder and learn what we CAN control, and what we cannot...What we can treat and what we must simply endure. 

Fear breads in the unknown, and ignorance leads nowhere.  Learning and reaching out to the information that is out there, is MY responsibility....YOUR responsibility.  The more I know, the more I am learning new ways to THRIVE....and to help show others that they can THRIVE too.

But Education is only part of the E.A.S.Y. way to Thrive....Tomorrow, is all about ACTION!


Wednesday, May 11, 2011

Facts and Truth...The End?

I don't know about you, but typically when I am told something by my doctors, I take that as the truth and rarely argue with what I am told.  It takes a LOT for me to ask questions that could go against what they are saying.

"You have Neurofibromatosis," was a given.  "You have hydrocephalus and a brain tumor", was also something that made sense to me.  It explained my headaches/dizziness that have been a constant complaint for as far back as I can remember.

After a 2nd, now a 3rd opinion, I have gotten results that have left me feeling both relieved and confused. 

My new Neurosurgeon, who came highly recommended, seems to believe that what I have is not true hydrocephalus, but he wasn't surprised to hear that previous doctors interpreted my MRI that way.

He definitely saw my enlarged ventricles and brain tumor, but instead of hydrocephalus, he called my condition Ex Vacuo.  Something I had never heard of.

He compared my brain, to a big hole in your backyard (nice, eh?)  If you fit something tightly in that hole, it stays the same.  If you leave the hole empty, eventually the hole gets bigger, because there is nothing to keep contained.

So basically, my large ventricles (or holes) have become large over time and pushed my brain outward.  (Now my hubby can laugh when he says something about there being a hole in my head)

Ex Vacuo found in MRI's can be interpreted as NPH (Normal Pressure Hydrocephalus) and can mimic NPH with its symptoms leaving MANY people getting diagnosed incorrectly.

For me, my symptoms of daily "pressure headaches", have not only caused me a great deal of pain, they have also been dismissed by doctors. 

After several MRI's, spinal taps and countless consultations... and my initial diagnosis of hydrocephalus, I was told that it was too late for a shunt, leaving me feeling totally helpless.

So, while I am happy that my supposed hydrocephalus won't require shunt surgery... I am told that nothing can be done to treat my symptoms.

Do I go for a 4th and 5th opinion?  How do I know that THIS is the final answer?  I have a hard time believing NOTHING can be done.  I have a hard time leaving a doctors office being told to "hang in there".

Sometimes your hear news you don't want to hear.  Sometimes the truth ends up being something you never imagined.  But it's still up to us to not just roll over and take it.  We still have control over how we choose to handle the truth.  Whether it's good truth, bad truth or truth that has no clear solutions.

There's always tomorrow.  Thrive on!

Monday, May 9, 2011

Weird Like That!

I've always been different.  Growing up, I was the girl with holes in her jeans and messy hair. The "chubby tomboy", or even just the "weird girl".

Now that I'm in my mid-30's, not much has changed, other than the fact I'm much more likely to use a brush.  :)

I'm still very much a tomboy and I still wear jeans with holes in them. I know that I will never fit into a size 2 dress...I prefer football to ballroom dancing...and I know my way around the kitchen as well as under the hood of a car.

I am still the "weird girl"....The one who gets laughed at, and pointed at, whenever I go out.  The one who hears people whispering as she walks by.

Heck, even within my own unique group, (those with Neurofibromatosis), I'm weird. I have kids that don't follow the 'known' path for the disorder, developing tumors and fibromas long after the risk should be gone. It has even happened to me.

I briefly touched on this last week, but I have a new friend in my right leg. A tumor about the size of an apple has grown, seemingly in the last month or so. Its big enough to be seen when I wear my jeans. Its thick enough to block feeling, such as cold from an icy 32 oz McDonalds Diet Coke. Its painful enough to make walking more and more of a chore each day.

Wednesday, I'll be getting an update on dealing with my headaches and hydrocephalus. You can bet I'll be bringing this up as well. I've been told it may be possible to remove it - though it may not be deemed 'medically necessary'. I've also been told it could be so entwined with my leg, and in danger of growing so large, that I may become a matching bookend with my husband - eventually amputating my leg from just above the knee - SHUDDER.

Tough to Thrive in the face of that kind of reality, but I plan to anyway. Guess I'm just weird that way:)

Thrive On!

Wednesday, May 4, 2011

Get OUT of the NF Box!

There's no better way to kick off Neurofibromatosis Awareness month than to have a full schedule of MRI's, Chemotherapy, Xrays, 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....15 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.

After a HUGE fight with insurance, 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!

Bailey's 2nd and 3rd MRI would show the growth of another tumor, growing silently...causing no symptoms.  This tumor is growing on the Corpus Collorum , and required immediate action.  Bailey is now undergoing a year of chemotherapy...and Doctors are wondering why these tumors presented, without ANY symptoms.  Without fighting, we still would have no idea there were ANY tumors!

Time to throw that NF Box away!

NF also took a swing at my 13 yr old son.  After a few years of "clear" MRI's, his latest MRI showed a BRAND NEW Optic Gioma, and we also discovered NEW plexi forms growing on his spine and under his arm.  This was after I BEGGED and BEGGED for an MRI, because Doctors didn't feel Braden was showing any symptoms and didn't require one.

Typically, Doctors stop screening for Optic Giomas after the age of 8....AGAIN, without fighting, We would have never known about Braden's new tumors, and would continue to be told, that Braden was exaggerating his pain. 

Neurofibromatosis for me, would leave me undiagnosed until AFTER 5 of my children were born. The massive symptoms I was having, were  "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!

Other symptoms continue to creep up....and unless I fight for what I need, I will NOT get it.  A recent ultrasound of my leg....After thinking the pain I was having COULD be a blood clot, showed an APPLE SIZED plexiform tumor in my right leg.  

But ALL the information out there, says you are born with plexiforms?  That P;exis are typically diagnosed in childhood...What about ME!?  What about Bailey?  What about Braden?  What about those parents who sit at home, relying totally on their own research?

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

Tuesday, May 3, 2011

Ohhhh Canada!

"What if they don't like me?"
"What if my message isn't what people want to hear?"
"What if I let people down?"

I don't know about you, but I am constantly having this battle in my head and struggling with my inner self, who tells me I am never going to be good enough.  This struggle fills me with so much self-doubt that it sometimes paralyzes me.

I think I spent most of my time, before my trip to Canada, worrying about letting people down.  I do this to myself constantly, and can't seem to find a way to lay those worries to rest.  

I have never been the over-confident, positive thinker, and only recently dove into the world of speaking in public.  Which is something I told myself I would NEVER do!  But I have to say, sharing my story in public....To an actual LIVE audience and helped me grow in a tremendous way!

Wherever you go, go with all your heart.  ~Confucius

I am not your typical motivational, Tony Robbins type speaker and I never plan on being like that, but who I hope I am, is someone that speaks with heart and sincerity.  Someone people can relate to, and feel like they can approach.

The trip to Toronto was wonderful (aside from being pulled into security and finger printed in  Canadian customs)  I will forever be thankful to NFSO for the opportunity to share my story; including my struggles and triumphs.

Being a part of the NFSO meeting, is something I will never forget.  The friends I met there, will forever be in my heart.  It's THESE friendships that help make the E.A.S.Y. process a little "easier".