FREAKY FRIDAY

I thought for FREAKY FRIDAY..I would post some 'Freaks of Nature'. I found it interesting, that when searching for photos...Neurofibromatosis came up, quite a bit. It's a shame the world views us as freaks.

Below are beautiful creations of God......

( as well as some examples of what people can do with that creation )

Aww Turtles!

Weird!

This person IS suffering from NF. They have what is known as a plexiform, neurofibroma.
This to me is not a freak of nature....Its a person who needs medical help.

This is just wrong...I guess I wouldn't be asking her to help tie my shoe laces.

Uhhh,,Is it just me, or does it look like he has balloons under his skin...

Awww, a putty tat! Or is that TWO putty tats?

This is John Merrick. He was the original "Elephant Man"...once thought to have suffered from Neurofibromatosis. He, in fact had Prodeus. John Merrick died after living a sheltered life.....he was thought to be a freak, but he wasn't...he was a brave and sweet man!

I've seen this family on the discovery channel....and they are VERY proud of who they are!!




HAVE A GREAT WEEKEND EVERYONE!

BLESSINGS

Thriving Thursday!

James O'Neal compares himself to the 'Elephant Man'......Neurofibromatosis, has deformed his face, but this mans heart and soul are perfectly in tact. NF commonly mistaken for 'The Elephant Man Disease' affects 1 in 3000 people world wide. People affected by this condition develop non-cancerous tumors along their nerves. The tumors are called neurofibromas. They are a mass of different types of cells that grow on and surround nerves. Neurofibromatosis can also cause skin discolorations (also called "café au lait" spots) and bone abnormalities. Men, women, and people of all racial backgrounds may develop the condition.



"I just tell people this is who I am, it's the way I am. If you don't like me, you don't like me," he said. While some may stare, laugh and point their fingers....James faces life with bravery.



James sees hundreds of people a day, during his job as a cashier at Safeway. He is not hiding. He is sharing his spirit with everyone that comes into contact with him. I love seeing this kind of story....His customers like him so much, that they started a fund raising website, to help James raise the money, for his surgery. His employer even donated the first 10,000. It's plain to see James has truly made his mark. He is an inspiration to so many!!



I am in love with James' THRIVING with NF. He teaches all a lesson. When I asked my 8 yr old daughter what she thought of James' picture...her responce was as innocent as it gets...."I bet, if I were to meet him, he would be a very nice man." I sure wish we could all view life, looking beyond physical appearances.

Thriving Thursday

I grew up in a unstable home. There's no denying that divorce traumatizes a family. Everyone involved is affected.

My brothers NF medical problems were surely a factor, in the stress my parents were under. As a parent now, I can understand how truly difficult it is to balance everything, when one of your children is chronically ill.

After the divorce, my brothers and I were split up. Mom got Mikey and I, my Dad got Jay and Kyle. As a 7 yr old, I couldn't understand why we couldn't all be together. In my mind, my mom got the "damage" kids..while my dad got the "normal" kids. Why did I have to suffer, when it was my parents who had the problem? I spent a lot of that first year, very angry at mom and dad. It wasn't fair!

Watching my mom after the divorce was very frightening. She went from a vibrant and happy woman, to a frail, angry monster. Her eyes grew dark...as did her soul. She was broken.

I have learned that my mom tried to take her own life a few times. Even with me sleeping in the bed, next to her, I had no idea. I knew my mother was sad, but I could not possibly grasp how deep her wounds really were.

It wasn't until I was an adult, divorced, with 2 kids. That I could understand the stress my mom was under. The weight of the world on my shoulders. No breaks. Over tired. Working 3 jobs. I wasn't suicidal, but I was pushed to the brink of desperation....

I don't know what exactly "saved" me....maybe it was remembering my mom...and how I never wanted my kids to catch a glimpse of anything close to what I saw. I would cry out to God, to keep me from that dark place. To give me strength to get through another day.

It wasn't long after my divorce, that I met and married my best friend.


I connected with another 'NFer' today. He posted on a message board, and I responded immediately. His post was that of a very depressed and broken soul. Talk of suicide laced his words. I recognized it right away, and felt drawn to him. He felt that NF was ruling his life....keeping him from a normal existence. As much as I relate to the NF, and the problems it causes...I have never once felt that me being here was a mistake or that I wasn't normal. I have always felt, that if someone couldn't accept ME for ME...then THEY were the ones who weren't normal.

Anyway, I talked to this gentleman for over an hour using the instant messenger...and have definitely made a new friend. He is a very nice person, who feels very alone. It's true, we can allow NF to isolate us...making the world seem so large, that we are but a speck of dust. But its when you find that ONE person who totally gets you, that the walls of the world close in just a bit, and you aren't so alone.

It's so important to reach out, if you feel you are losing touch. If depression and anger consume you, you are NOT alone. I know there are things in life that seem so big, you never think you can overcome them....but all you really need, is someone to help you see another way to deal with it.

This is awesome website! www.save.org/
You can also call: Suicide Prevention Lifeline 1-800-273-TALK

Getting help, just means reaching out.

Another WACKY WEDNESDAY!!

Is it Wednesday already!? WOW!

Have you ever glanced at The Guinness Book of World Records' book? It's hilarious...Wacky.....frightening...weird and ....sad. I was flipping the pages and came across this:

This is Lucky Diamond Rich. He is in the Guinness book for being the 'MOST TATTOOED MAN'. He has 99.9% of his body covered in tattoos and seems quite proud of that fact. Uhh...What is this man trying to cover up? Or is he simply just showing off? He seems like a nice enough guy, articulate and smart. But I just don't get it.

Even with the tumors and birth marks, I feel it would be a slap in face to my Creator, to do something like this. I choose to view myself in light of Christ’s love for me..which means, I've been made perfect.

I think about this guy.....and umm well -- what if he changes his mind? Does he want to live forever like this? Sometimes those choices I wrote about yesterday...can haunt you, for the rest of your life!

I have wanted to get a tattoo....small subtle, and on my ankle. I have this picture of a Daisy (my fav flower) with each of the petals having my child's name on it...even a petal for Rich...and in the center of the flower...the word FOREVER. But I have never been able to bring myself to do it.

But....this guy is over the top. And hey, he got me blogging about him, huh?

Have a GREAT DAY!

Turn it around Tuesday

I see them all over where I live. People begging on the streets for money. I saw one today, that brought me back to a childhood memory.

I was 9 yrs old and had just gotten 20 dollars for my birthday. I put the money in my little purse and headed out one day, with my mom. We braved the streets of Reseda, California, to walk the stores and pick up a few things. I was hoping to find a few treasures for myself, as my mom did her weekly errand run. This was the real seedy part of town, so my mom held my hand tightly.

I saw this guy sitting against a building, with a sign next to him. "Will work for food"...it read. I remember feeling so sad for him. I wondered how someone could be that bad off, that they had to beg for food. As I passed him, I reached into my purse and pulled out my money. I turned to the man and walked over to him. He smelled so bad, I could hardly catch my breath. I knelt down and handed him my money. I remember his response and felt good about my decision. "Thanks Kid".

We entered the store that was across the street from where this man was. We picked up our items and walked back, the way we came. The same man I had given my birthday money to, was now celebrating, with a cold 6-pack of beer and cigarettes.

I was confused. I felt angry....I wanted to go over to him and ask him why....Why would he ask for food, and buy beer? I WANTED MY MONEY BACK! My mom quietly whisked me away...but told how proud she was of me. She told me that sometime people are so desperate for what they want, and sometimes ashamed, that they lie. She told me that doing what HE did was wrong, but doing what I did was right.

Looking back on that day, I feel I have learned that he may have not bought food with the money I gave him....but he filled his need. I made him happy.

I have never given money to strangers on the street again, but I look at them in a different way now. They may be asking for food....but truly be needing something else.

We tend to spend our lives, filling needs 'in the moment', which can create more negative results for us down the road. I was filling a need that day, of my own. An immediate gratification of doing something I thought was good. The beggar did the same thing. Filling an immediate "need" may make you feel good ...but is it the right thing to do?

Sometimes acting out of fear or desperation can lead us down a path of destruction. We end up worse off, than we were before. What I did that night wasn't wrong....I was being lead with my heart, and honestly wanted to help that man.

Do you live a life of fear and desperation? I know I do sometimes. I sometimes think that life will never get any better, so I have to do or get something RIGHT NOW. Then end up paying the double price of feeling guilty.

So today, Turn it around Tuesday asks you to think about the decisions you are making. Are you filling an immediate need...or a long term goal. There is nothing wrong with giving money to beggars on the street, if you are prepared for what could happen after that. :)

Have a great day !!

Motivational Monday Presents: FREE REFILLS?

What makes it so easy for a child to ask for something? Why are children so 'in the moment'....when us adults have to sit in contemplation for hours..or days...or years..?


Children have this fearless way about them, that makes it so easy to ask for anything! "Mommy, can I have a pony?" Even if they KNOW the answer is going to be "NO!"....they will still put themselves out there.


Fear of rejection, doesn't really seem to exist with children. Why is that? Wouldn't it be cool if we as adults were more 'in the moment'....? Instead of constantly thinking and re-thinking our decisions. Sometimes we as adults tell ourselves NO, even before we think to go ask.


Sure - I know there are important decisions, that require thought.....but what if just once....we lived life as a child and asked for what we wanted.... To quote one of my husbands most popular speeches, "Instead of wishing -- if I only knew then, what I know now, what if if we knew NOW, what we knew THEN."


Over the weekend our family went to Burger King, before starting our grocery shopping at Wal-mart. Going out for ANY meal with 6 kids is crazy...and expensive! So to cut costs, we usually double the kids up on drinks....and really take advantage of the 'free refills' !!

After devouring their food....the kids were savaging for more......"You can't possibly be still hungry?!?!" The kids just look at us. So Daddy suggested they take their empty fry containers up to the front and ask for their "free refill"....(since the sign above the beverage bar didn't specify, it was only for drinks)

The older kids would have nothing to do with that dare.....but our little Rachel bug.....grabbed the french fry box....marched right up to the counter....and asked "May I have my free refill please?"

Even if Rachel KNEW the answer was going to be NO...what made her ask anyway? She didn't care that her request seemed silly.....she knew what she wanted...and she asked for it.

Those of us living with NF, or living with any medical condition for that matter, know, that sometimes you have to fight--to get what you want. Just because the DRS say its so....doesn't mean that's the end of the discussion.

I look back on the countless Drs I have asked to remove the tumors...and the countless doors that have been slammed in my face. "It's cosmetic", they all told me....."There's nothing we can do to treat NF"....SLAM SLAM SLAM!

I wasn't going to give up. I asked AGAIN....at the NF research, while at NIH. I was shocked, when I got a very different answer. I even got a print out, of the correct medical codes, so that the insurance can be properly billed. "Removing tumors is NOT cosmetic"....What part of THAT do Drs not understand?


Don't let NO....be the final answer.....Don't afraid to ask for what you want. Even in the face of disappointment, don't let other people control your outcome.

Have a GREAT WEEK!

FREAKY FRIDAY FACTS!!

YAY---TGIF!

Was this a LONG week, or is it just me? I can't say I got a lot accomplished, unless you counts the HOURS and HOURS spent at Doctors offices, parks and splash pads!


So it's time for FREAKY FRIDAY......Today I wanted to post some FACTS about Neurofibromatosis, that maybe you never knew. For such a common disease, I find it amazing that so many people don't know much about it.

DID YOU KNOW???

*NF is not a rare disorder, it is the most common neurological disorder caused by a single gene.
(did u know 1 in 3000 births are affected by NF? *WOW*)

*NF has been classified into two distinct types, NF1 and NF2. They are caused by different genes, located on different chromosomes.


*NF1 is the more common form of NF, affecting approximately 1:3,000 births throughout the world.
(Crazy huh)

*Both NF1 and NF2 are genetically-determined disorders which affect more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.
(WOW, huh? So why isn't more being done? Why don't more Docs know about NF? Scary)

*Both forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.
(LOL....In English, this means.....NF can "just happen"...or if mommy or daddy has it.....baby has a chance to get it)

*Each child of an affected parent has a 50% chance of inheriting the gene and developing NF.
(Whhhoooopppie......I wish I could play the LOTTO, with these kind of odds.)

*The type of NF (i.e., NF1 or NF2) inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.
(This was part of the NIH research I took part in......why does NF affect everyone differently? AND...can Drs predect the severity?) Hmmmm

*NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
(NO discrimination......GReat...Thanks a lot)

*Although most cases of NF1 are mild to moderate, NF can lead to disfigurement; blindness; deafness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies; and learning disabilities.
(MILD/MODERATE....NF still sucks. One tumor, or thousands...I have learned that NF not only affects appearance.....it torments the soul. I wish all DRS had a manditory course in rare diseases, because the ones I have met...seem to have no clue. They don't seem to think NF causes pain.....with the exception of the NIH Drs, no one seems to give a damn)

*NF also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF population than in the general population.
Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).
(My two kids that have been affected by NF, have learning difficulties. With loving patience....I know they will be okay.)

*NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that Joseph Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.

*NF research began eighteen years ago by the National Neurofibromatosis Foundation, has been enormously productive ever since.
( I am lucky enough to have participated in NF research....It was an amazing time for me....Giving back, even just a little....helps me feel like I am doing something---if you want to read about it.....just scroll down and read previous blog posts.)

So there u go---my FREAKY FRIDAY FACTS.....I HOPE THAT YOU HAVE LEARNED SOMETHING TODAY....

GO OUT AND MAKE IT A GREAT WEEKEND!

THRIVING THURSDAY

My entire life, I have searched for something to believe in. Sure, I believed in God, but I always kept Him at an arms distance. I grew up with a mother who had nothing nice to say about God, so I was left very confused.

Even when I grew into a woman....I always felt so lost. I really had no one to guide and shape me, into who I was to become. The path I walked, was my own....or so I thought.....

I felt I had no purpose.....

When one searches for their purpose, they must search beyond themselves to find it. That was a hard lesson...and one that took a long time to learn...and re-learn...and re-learn. But when I figured it out, it was so plain to see, I found it hard to believe I kept missing the message God was trying so hard to fill me with.

Everyone has a purpose. Finding it, is really not difficult. You have to go to God and ask Him. Wait for His answer. He will show you the way.

So what is MY purpose? I live it everyday. I see my purpose in my children's eyes. I see it when my family is gathered around the dinner table. God has blessed me so much. He has chosen ME to take care of His precious children.

One of my favorite Proverbs is 19:21 it says "Many are the plans in a man's heart; but it's the Lord's purpose that prevails."

This makes me feel so good. I know that I am not a mistake. We all have our purpose and we all are the same in His eyes. We can go our own way, and get lost, while we search for the right roads to take.....But I'd rather be doing more productive things.

With regards to living with NF. I know I was chosen for that too. Maybe it's to make a lasting impression on those around me, who see me struggling with such a cruel and nasty disease. OR Maybe I am here to touch the hearts of those who are struggling so much, that they would never ask for help. Whatever the reason, for NF being a part of my life...I embrace it.

That's what 'THRIVING' with NF means to me. It's accepting what IS....and making the most out of it.

WEBSTERS defines 'THRIVING' as:

A VERB

1. to prosper; to be fortunate or successful.
2. to grow or develop vigorously; flourish

And this is what I am choosing. Staying in the light of our God, makes me so happy. I am lucky to be here....able to fight, able to survive. Having NF, means this......It makes me choose happier, live fuller and THRIVE in everything I do.

So, today, my dear friends....choose. Choose to THRIVE throughout your day. I know we all have "things" in our life that pull and weigh us down, but we can choose the upwards climb. You will not be alone in your journey....God is there cheering you on. And as you get closer to Him.....Your purpose will become clear.

WACKY WEDNESDAY!

I'm hoping 'Wacky Wednesday' will be a day for fun jokes or stories...if you have any suggestions, please let me know :)

A few yrs ago, The Last Comic Standing had a fellow on the show who had a 'disability'. I fell in love with this guys personality. He was confident, but not cocky.....He had a way of laughing at himself, without making it seem over the top.

Check him out here:

http://www.youtube.com/watch?v=3OHVGgk1Qg0&NR=1

Sometimes, we just need to step back from the reality that life throws at us, and focus on the funny stuff. Everyone knows that laughter feels good....Smiling and laughing can be also, very healing.

I refuse to let this NF control me. It's not my life....it's just part of who I am. Now we just need some folks to come up with some good NF jokes and we're set!

Although -- I have told my kids that I was going as bubble wrap this year for Halloween.

Enjoy your WACKY WEDNESDAY....Go make someone laugh! Do something FUN.

TURN IT AROUND TUESDAY!!

Nothing like getting back into the swing of things. The time away was great....but now reality has taken hold of me, and I must come down from my high....

This week is FILLED with appointments. Our first one was to the Ear, Nose and Throat Doc., for Bailey. A few months ago, she had quite an ear infection, that ended up busting her ear drum. *ouch* Poor girl! We had to see a specialist, because it was not healing very well.

While in the waiting room, I noticed an older woman, sitting by herself, next to the window. I didn't stare, but I did notice some bumps, along her neck and down her arms. She was wearing long sleeves, that were pushed up to her elbows. Her eyes were dark, and sunk in a bit. Her mouth was drawn and tight. She looked worn and tired. I saw "NF" all over her....even though what was visual, was just a few bumps.

I casually made my way over to her, by placing a magazine on the table that was next to where she was sitting. We made eye contact and smiled at each other. It was an instant connection. She made a comment about the girls, and how good they were being (even tho they were running the walls and driving me bananas) She asked the ages, and was shocked to hear I had two more kids at home. :)

Several minutes of light hearted conversation went by....in my head were spinning thoughts about how I could mention NF, without making her feel bad. I didn't want her to think that her NF was very noticeable, because it honestly wasn't. I only saw, what I see on me. NFers can almost "sniff it out"...LOL

So, I just said it, I asked if she knew about NF. The look on her face was that of shock. She smiled and told me "YES!" A few years ago I never EVER would have acknowledged NF in myself, let alone, asked about it in another person.

She was a delightful woman, and we exchanged e-mail addresses. I shook her hand and told her that she was a beautiful woman....that the only reason I saw her NF, was because I had it too. It seems she felt the world get a little bit smaller.

It's hard going through life, with a disease (God I hate that word...makes it sound like I'm infected with the plague) that no one knows about, and few deal with.. on a personal basis. So, I am making a point to go outside my little BOX...anytime I see an opportunity.........THE TURN AROUND TUESDAY....is doing something you wouldn't normally do. Go above and beyond the call of duty, and surprise yourself.....you may just make a new friend...or leave quite the impression on someone.

MOTIVATIONAL MONDAY

Do you set limitations on your dreams or goals? Are your challenges keeping you from dreaming bigger?

Sometimes the challenge, can be other people. They can stand in your way of achieving your goals. Knock you down and tell you lies. This can be very damaging.

If there is one thing I have learned from having to deal with NF, it's that there are some things you have to fight hard for. Keeping a positive outlook, when the future seems bleak, is not easy. It's a fight for your life, and I am determined to fight to the death.

A favorite saying I have heard is "I have NF, NF does not have me". This can be true for any number of things you are dealing with. If you let whatever it is you are dealing with, beat you, the game is over.

I know that God put me here for a reason. I embrace the NF, and thank God everyday, that I get to be here. I am blessed with a wonderful family.

Whatever it is, that you may be dealing with....an illness, a physical limitation, the loss of a loved one; you have to fight, to keep your spirit alive. Surround yourself with people who will lift you up.

~*~THIS TOO SHALL PASS~*~
written by
HELEN STEINER RICE

If I Can Endure For This Minute
Whatever Is Happening To Me,
No Matter How Heavy My Heart Is
Or How Dark The Moment May Be~~
If I Can Remain Calm And Quiet
With All The World Crashing About Me,
Secure In The Knowledge God Loves Me
When Everyone Else Seems To Doubt Me~~
If I Can But Keep On Believing
What I Know In My Heart To Be True,
That Darkness Will Fade With The Morning
And That This Will Pass Away,Too~~

Starting something NEW!

It seems I have A LOT of people who stop by and read this blog, then fade away. Let me see if I can change this! I want my readers to come back....and stay. I want to inspire and uplift.

Please if you read this blog....select the FOLLOW button, so I know you are out there!

Starting this MONDAY MONDAY MONDAY!!!!!! I will be starting something new! Each day of the week will have something for you to look fwd to! It could be a personal story, an inspirational event, something funny, something sad, something 'freaky', or it may be a call for help. Even the most positive of people, get lost in fear and pain. I want my readers to feel like they belong here.....feel like they are not alone.

The struggles NF puts in front of us, doesn't have to be scary. We can face the unknown, with strength and knowledge.

So, my friends.....here's what I would like to do:

Start EVERY Monday with something motivational....."MOTIVATIONAL MONDAY" :)

Every Tuesday will be something to turn your thoughts around to something good...."TURN AROUND TUESDAY"

Wednesdays will be something just for ME.....(you) When you are battling a disease like this, it gets exhausting....for the people suffering, and for the care givers. Wednesday will have a little break, from all that stress! "WHAT ABOUT ME WEDNESDAY".

Thursdays will be what this blog is all about. THRIVING! Everyday we make choices. Good ones, bad ones.....THRIVING with NF is a choice I make everyday....let's make that choice together! THRIVING THURSDAY!!

and just for fun....

FREAKY FRIDAY! Will be jokes, funny stuff....whatever I feel like---to lighten the spirit!

I hope you will enjoy these changes!!

God Bless you all!

Please leave any feedback as a comment!

TTFN

Labotomy/Phlebotomy, what's the diff.?

Mikey is always making people laugh. I told him, "That's your gift!" He has always been able to make friends very quickly. Not many people can do this, and he's a natural!

He's an awesome guy, and I love the fact that we got to share the NIH experience together! I think he made quite the impact on the NIH drs.

On our first day, labs were ordered. Finding your way around NIH takes some practice.....I told Mikey, to go over to the security guard, who was standing in a room filled with people. I asked Mikey to find out where he goes for a "Labotomy". He went walked over and in his deep and loud voice says ... "Hi there Sir......How are you? I'm here for a Labotomy, can u tell me where to go?"

So innocent....He had no idea.

The room fell silent.....Me, hiding behind my magazine. A few giggles, errupted into enormous laughter. The securtiy guard about fell over. Asking Mikey, if he meant PHLEBOTOMY. I love Mikey to death...he is such a great guy....!

I just had to share that :) heheehee

The time I spent in Maryland feels like it didn't even happen. It's weird how fast episodes in your life can pass.
I came home to a HUGE 'Welcome Home Mommy' sign, taped across the doorway and a colorful picture of me, drawn by my great kids. The house was tidy and no one had died. I am very proud of my hubby...he took care of everything.
I went in to look at my sleeping angels, Bailey and Riley were still awake. I hugged and kissed them; told them how much I missed them. Riley tells me to never go away like that again, and Bailey just says how much she missed me.
It was so nice to be home!
The next day, we took the family out for our appnts.....got Rileys Xray done, and braved Carls Jr at lunch time! It's great, what a few days away can do to reguvenate the mind and body! The kids played and hubby and I got a chance to catch up on everything.

We stopped at the grocery store, to prepare for the week and headed home. I just really love my family....I am thankful for each one of them.

We may face medical problems and other issues...but we have each other. Nothing can break through the faith we have.

Day Two of NIH testing

The time spent here, has been amazing! The hotel room is nice....and the people have been awesome! We are truly blessed to be able to be a part of this study. I am thankful to all the wonderful doctors, nurses, and specialists who have decided to learn more about NF.
The morning went a bit smoother than yesterday. We woke up, had breakfast, and caught the shuttle to NIH. We were like old pros with the check in process and security.
We started the morning out with an echo cardiogram. It went fine, and took less than a half hour. The “echo” was looking at the heart in every angel....seeing if there are any abnormalities. Some 'Nfers'...have issues with some of the muscle that lines the heart. The tech looks at blood flow, counts beats, measures...then inputs that info, into a database were all the other NF info is. They will chart this info and note any similarities between each NF patient.
Mikey was joking, and in good spirits when we left. However, when I told him that we were headed to the dental clinic, he began a spiral turn downwards. He was afraid and embarrassed. I tried to talk to him...reassure him. I have seen Mike like this before....but I was truly taken back by his behavior. I hugged him and told him it was okay. Talk of suicide and hateful awful words came out of his mouth. He told me that NF was the worst thing in the world. He hated himself, and simply wanted to die.
When someone doesn't take care of themselves, then has to deal with the repercussions, it's not fun. The dental clinic, found what Mike already knew. He has some major dental problems....he was ashamed and afraid he'd get yelled at or looked down on. None of that happened. He was treated with respect and caring hands. They asked about his mass on his cheek....we were impressed that they wanted to know more....and will be referring Mikey to places in SLC.
I had to take Mike aside, tell him that his behavior was unacceptable. The talk of suicide will stop. I told him how important he is to me....to everyone he comes in contact with.
We had lunch and got him settled down a bit. It was nice to not be in such a rush. Yesterday feels like a blur....I can barely remember everything that happened (good thing I blogged as the day went on) We took our time eating...I called Dad to fill him in on things.
The last meeting with Dr. Stewart and Sarah....was to talk about the MRI....from the previous day, and to take pictures of our eyes. We had a nice lady come in to talk to us about Mikey's mass....and we worked out a plan to follow up with Mike's Neuro-surgeon.
I was invited to come back to NIH in a few months – for surgery on a mass the MRI picked up on my left hand. I was told to 'think about it', but why would I turn that down? The free surgery isn't the reason for my excitement....instead, I would be continuing to give back....offering information about the type of mass I have. An added benefit would be, of course that it would be covered in full....but also, relieving the pain, that I thought could never be fixed.
After saying good-bye to Dr. Stewart and Sarah Coombes....I headed to my spinal MRI. I have to say....I was so happy that our waiting was at a minimum. The IV was placed...(after 4 pokes) and I was sent into the MRI “tomb”.
My eyes were so heavy, as I lay there. The sounds of the machine, clunking and twirling around me. It was cold, then warm, then cold again. I thought about my brother. He was just simply verbalizing, what I feel sometimes. I get so frustrated with having NF, that I could easily fall into a pit of despair. I thought about his words...”This is the worst thing in the world”. I said a small prayer for Mike....for him to understand, how things could be so much worse.
I actually feel good. NF or whatever....it doesn't matter in the grand scheme of life. I am happy. I have a very full, very blessed life. I am surrounded by so many people who love me.....(even if my 8 yr old says she was beginning to forget what I look like-----I guess being gone for 4 days is out of the question, in the future...LOL) So I may never be a supermodel, with perfect skin and teeth. So I may never weigh 90 pounds and be 5'10”. That all doesn't matter. I have God in my heart, a sharp mind, wonderful family and close friends. What more does a person really need?
Thank you to NIH and all those involved with the study for NF1. Keep going, keep searching! We Nfers are blessed to have you questing for treatments!
God Bless!

NIH

The day started early. It was so nice to sleep, virtually uninterrupted. The hotel room stayed cool and dark and I slept sound and deep.
Our first stop was to get some breakfast, that was provided by the hotel. Orange juice and a bagel for me....Mike chose to just have orange juice...since they didn't have anything he liked.
We caught the shuttle from the hotel to NIH....It was a bit confusing, with all the security measures, but we made it.
Mikey needed his diet coke, so we found a vending machine –
We stopped in at the admissions desk, then the voucher desk. Everyone we spoke to, was polite and took the time to explain things.
They checked us checked in, and gave us a folder for our medical records. It was nice to have a copy of our schedule, so we knew what to expect, and what time everything was going to happen.
Blood draws---Mikey joked about his blood coming out carbonated and carmel color, because of all the diet coke he drinks.

I have to add something really funny....at our hotel, there is a Diet Coke vending machine.....it charges $1.75 for each diet coke....Mikey had to go to the hotel desk to tell them that they were OUT of diet coke.....he was sad to hear that they fill it up once a week. OUT OF DIET COKE?!!?!?! NOOOOOOOOOOOOOOOOoooooooooooooooooooooooooooooo!! For a guy who drinks at LEAST 4 a day, this was NOT happy news. Lucky for him, the 7-11 was just one block away!

I met Sarah Coombes, who was just as wonderful in person, as she had been in email, and on the phone. Mike and I went over a brief family history, and talked about any symptoms we've been experiencing. Things like pain, vision problems, depression, head aches etc. There seems to be a connection with Neurofibromatosis and depression....(really?......No Kidding!?)
I also saw a very nice lady, who is a pain specialist. After talking with her....It seems like my back pain has a lot to do with stress. When a person is stressed, or has a very stressful life.....they “tense” up their muscles....and you can do this, and not even be aware of it. Anyway.....she suggested that I look into acupuncture. I have read about the benefits of acupuncture, and I'd love to have this done. She was so friendly, and I appreciate the time she took out of her day to meet with me.
After meeting with the pain specialist, I went back upstairs. Mike had met with Dr Stewart to have his physical exam and some photos of his skin....and now it was MY turn!
This was the exam I was so nervous about.... I don't even let my own husband see me THIS exposed. If I could make just one suggestion to make this a easier process, it would be for the Dr. nix the gown altogether. I would rather of been standing there in my “skivvies”, then to have to deal with how much or how little the gown was covering.
This exam was both uncomfortable and comfortable at the same time. Even an “average” person would feel creepy if every inch of their body looked at with a black light and a magnifying glass. But, I also felt an overwhelming sense that these Drs. Realy truly cared about me. They weren't to clinical, and took the time to explain to me, exactly what they were doing.
Sarah Coombes drew out a family tree, and we dove into the complicated NF web. The “who's who”...and “what's what” of this painful devastating disease. Genes and cells and chromosomes....and what exactly the study that we are doing is all about. Basically....NF is so variable. Even in the same family. Why? Why is that NF gene so large and complicated? Why are there people like Reggie Bibbs.....then people where the NF is near impossible to see. That is the whole point of out visit to NIH. I am so blessed to be a part of this study....so blessed to live in a country, where the specialists, are looking so hard for answers.
Tomorrow, will be another fun filled day! On the agenda....Echocardiograms, MRI's, dental consultation....then the wrap up session for the last 2 days. WHEW.

Bethesda MD!

Ahh - Finally! Mikey and I are here at the hotel in Bethesda, Maryland. The flight was uneventful (which I'm sooo thankful for!) and we didn't lose our bags!

The East coast is sure different than the West coast. The people here always seem to be in a hurry. Mike and I were practically run down by several people, when we went exploring, outside the hotel. I wonder where they are all going?

Mike and I found some greasy spoon, and got a hamberger and fries. We took the food up to the hotel, and began relaxing!

The hotel is charming. I am feeling quite spoiled right now....for even my husband and I didn't get to feel this relaxed. Our honeymoon wasn't quite 24 hrs...rushed and quite stressful.

So, tomorrow starts the begining of our testing. We are going to bed early....waking up early...and heading to the hospital.

I am looking fwd to this....I'm excited to finally be set free, from hiding. I am doing something that can possibly make a difference. One tiny step foward.

Keep following me...and this amazing journey.

Medical Research

In a few days, I will leave for Maryland, where I will be participating in human research for Neurofibromatosis.

While both excited and nervous, I find myself push by an unknown force of satisfaction. I know I am not going out to change the world, but it is really gratifying, knowing that even in its small -tiny way, may in fact, help researchers in their quest for a cure.

All I want in life, is to make one small difference, that could possibly ripple into something amazing!

So, my bags are packed.....I'm ready to go....(makes me want to break out in the John Denver song) "I'm leaving .. on a jet plane...."

I have my schedule, for when I will be at the 'National Institute of Health", and I will be quite busy. Which is good....because that will keep my mind off of what's going on at home.

My brother Mike, will be coming with me, which makes me feel a WHOLE bunch better! He is just as excited....but I'm not sure he quite grasps, what will be happening.

Monday morning will be filled with blood draws, physical exams, body pictures (ACKKK!), counceling and MRI's.

Tuesday will include, echocardiograms, dental consultation, MRI's, and wrap-up of the last 2 days.

All in the name of science, right? Jeeez!!!!

I know this will be the stepping stone to something great. I will fill everyone in, as the day closes, to let you know I have survived! :)

I pray answers come from this....that someday soon, researchers will have found a way, to help people cope with such a devastating disease. But until that day comes....we have hope. We have wonderful people fighting everyday, to discover a cure for so many diseases.

If you have the opportunity to be able to donate your time (and your body) in the name of research, please do. I found out about this wonderful opportunity through the CHILDREN'S TUMOR FOUNDATION (www.ctf.org)

Thanks to everyone, for all the love and support!

Let go....Let God

It never fails. It seems that the more I try to have faith in something, the harder things seem to hit me.

What does one do, when the avalanche of life's problems bury them? How are we to free ourselves from the pounds of dirt on top of us? We can't simply get up and walk away...because the more we move, the more dirt gets piled upon us.

We must simply let go, stop struggling and have faith that God will pull us out of the pit. That's the hardest thing for me to do. Giving up my control, and putting my faith in something is near impossible. So I sit in a tug-of-war, with someone, I could never win against.

Today, I got the results on Braden's MRI. His Dr., is definitely not educated in NF, and struggled through reading the complicated and confusing notes that the technician left. I was left feeling very confused myself.

Braden has "several" tumors that are at the base of his brain. When I asked the Dr. what "several" meant.....he responded that he didn't know, and it wasn't charted. "There are many, Ms Hopkins".

He prescribed medicine, for the frequent headaches, that Braden suffers....and he informed me, that Braden would likely have to take this for the rest of his life.

I was told to really pay attention to his vision...and to be sure Braden gets regular eye checks. Which he would, regardless of this damn NF.

Physical and motor skills were also another thing to watch for...."If he starts to get really clumsy, or falls down.....we need to have him in for another MRI"........otherwise, MRI's will be done yearly.

No optic nerve tumors *yay*

I got off the phone, gut wrenched......My head, hot and heavy. Flooding my body, were emotions that are all too familar. Guilt, fear, anger.....I wanted to scream, and run from this news. Now I have 2 children, who definitely have NF.....2 children who have brain tumors.

I find peace when I hang my head and say a prayer. I thank God for all 6 of my children.....and especially for my children who are dealing with such unknown. I pray for strength. I pray for God's healing hand to come over my family. Then, I feel it. I feel the Lords loving embrace...and all of the feelings that were weighing my heart down with such agony, fade.....I smile, and know that whatever may happen....I know the Lord is part of it. I find strength in Him.

So, hold your children close...tell them how much they mean to you. And show them. Play with them. Get dirty, messy.....and laugh!