Wednesday, December 30, 2009

Thriving Thursday

More on Depression

It's a known fact that people with Neurofibromatosis suffer from depression. I mean who wouldn't be depressed with having a condition that alters you physically, and causes severe, uncontrolled pain?

Sometimes I still find it hard to accept that I was "tagged" with this disorder...and sometimes I still find myself wavering in my explanations to others, about what is happening to my body.

I am a work in progress....I continue to strive for the honesty, rather than the hiding or flat out deceiving others about my NF. Not because I no longer can "hide" my NF, but because it honestly feels good to talk to others about it. When I can teach another human being, and have them look back at me, with shock and amazement that I am 'doing so well' , I get an overwhelming sense of peace and happiness.

I don't take any medications for my depression. Mostly I take accountability for my actions and push through it. But I tell you what, it is HARD to do. I find myself struggling with keeping my moods even, and my spirits up.

If I could find a magic pill to take that would keep me happy, I would....but I honestly feel that there are no magic cures for depression. It takes a lot of acknowledgment and responsibility to manage your moods. Accountability and realizing that you are not alone...and sometimes, the hardest thing of all....reaching out to others.

My New Year Goals:

To Acknowledge I am NOT alone :)
To be a friend to EVERYONE--even the stinky /jerky people :)
To THRIVE with NF, in everything I do
To finish / publish / and sell my book
To donate and support CTF
To continue to support my fellow NFers! (I love you all)
To go to NIH and have surgery, and arrive home safely
To lose 30 or more pounds
To support the changes in my hubby's career
To help my kids THRIVE and stay healthy

Post your NEW YEARS GOALS!!!
Happy New Year

Whacky Wednesday

My daughter looked at me the other day, after I mentioned being a little scared for my trip to NIH. "Aren't you a little old to be scared of doctors?" she asked. I rolled my eyes at her and drew her near to me. "You can be too old for a lot of things, but you are never too old to be afraid." (quoting one of our favorite holiday movies 'Home Alone')

My inquisitive little 9 yr old daughter began asking questions about why I was going to a hospital "ALL the way on the other side of the planet"...

She knows about Neurofibromatosis, at least she knows her mommy and 2 sisters and brother have it...But I thought I would take this opportunity to teach her a little about the disorder. (I mean hey, that's what we are all trying to do here, right? And you never know, she may just grow up and be the person to discover a real cure for NF)

So I went to the handy dandy Netbook, and typed in WWW.CTF.ORG ( I love this site ) and read to her the definition of Neurofibromatosis. I was amazed at her understanding and praised her for wanting to know more about this lifelong disorder.

As I was talking to her about the tumors that mommy has (glomus tumors) I told her that they cause mommy a lot of pain. "The drs here don't know much about NF, honey so I'm going to a place that knows ALL about it."

"I thought Drs were supposed to know everything though...why don't the ones here know how to help you...?" LOL My reply to that question could go on forever....but, I simply stated that there are soooo many illnesses, and diseases out there and not enough doctors. Which is true.

"How do we get more doctors to know about NF Mommy?" (Dang this girl is smart!) I hugged her and told her, "We just keep fighting, keep talking, and we don't hide from what scares us." She just looked at me and said something that melted my heart...."You're the bravest mommy I know, I will miss you when you are gone."

Another person educated about Neurofibromatosis.....will you take the time today to teach someone about it?

Tuesday, December 29, 2009

Turn it around Tuesday

Beating Depression

I've battled with depression my entire life. I've been on countless medications, only to find myself feeling lost and numb. I never quite figured out what was going on.
I watched my mother battle depression, and even to this day, she is in a daily - constant struggle.
Some days, I really have to fight to stay positive, and some days I lose, but what is most important, is that I always come out of it.
Here is a great website I found, that has awesome information about overcoming your depression.

1. Recognise and acknowledge it.
Recognise that life is full of ups and downs and even though now you may be feeling unable to cope, it will not last forever. Know that you are not a failure for being depressed, you are brave for addressing it and wanting to overcome it.

2. Be aware of your thoughts toward yourself.
You will just add to your depression if you get up every morning and tell yourself how depressed you are feeling and how difficult life is for you. Focus on the positive. There is at least one good thing in your world. Maybe it's your family, children, hobby, job, friends or church. Think about it when you are feeling down and of how lucky you are to have it in your world.

3. Develop an attitude of gratefulness.
Many people feel depressed when they look at the negative conditions in their life. Learn to think and dwell on the positive. Get somebody to help you and pull you up each time you begin to complain about something. Find one thing every day to be grateful about.

4. Avoid substances that can cause mood swings such as alcohol, caffeine and high sugar foods.

5. Keep yourself busy.
When you are active, your mind has the chance to wander and focus on negative thoughts that cause you to become depressed. Find something that you love to do, something you are passionate about. Maybe cooking, making crafts, animals, web design. When you find your passion, get busy working on it and keep yourself busy.

6 Exercise regularly.
Outdoor exercise is a key element in recovery. If you are sitting in a dark room all day with the TV on and the curtains drawn, it won't make you feel good about yourself! Get out at least once a day into the fresh air. Go for a walk for 20 minutes or a jog. If you are on medication, always consult your doctor before starting up a regular exercise regime.

7. Go out of your way to do something for someone else each day.
When you are feeling depressed, usually all you thoughts and mood are focused on you. Turn your attention to somebody far worse off then you and then start to reach out to them. You can do this by volunteering for a local charity, taking a group trip to a 3rd world country, visiting a lonely elderly neighbor. It will do you so much good because it takes your attention off your own problems or grief and helps you practically help somebody else in the midst of your own pain.

In overcoming depression, remember that
“You haven't lost your smile at all, it's right under your nose. You just forgot it was there.”

Monday, December 28, 2009

Motivational Monday

Back to the Eye Doctor

The hussle and bussle of Christmas is over and we must now get back to "normal". Strange isn't it, that we spend so much time and energy on a day that passes like all the rest?

We had an amazing Christmas! The gifts that poured in were amazing! I don't know if anyone who gave to our family reads this blog, but I wanted to thank them anyway....The amazing lesson you teach, by giving and blessing others, is priceless! God Bless you!

Today, Rachel and I get to go back to Dr Shae. Rachel will have her vision tested again, to see if there are any changes. Today, I will not worry about the results....I will simply hold Rachel's hand, and walk to this appointment bravely, just as she does (She actually runs, skips and gallops) She isn't afraid of these results. Rachel just faces life bravely and moves on.

So today, I am letting Rachel take the lead.

For those that don't know, Neurofibromatosis, has affected Rachel's vision....but not with an Optic Glioma. Rachel has a brain tumor on the basal gangelia (we are still learning what all this means, but so far we are learning it means Rachel's vision in her left eye is very poor)

We go in to the Pediatric Ophthalmologist every 3 months to check on Rachel's vision...The last visit, showed no changes to her vision....the 2 times before that, showed significant changes...So today, we face the unknown.

But just as Rachel holds onto that hope, every single day, I hold onto it too. I know that whatever the outcome is for our day today, we still have our HOPE to build our dreams on.

I love you Rachel!

Wednesday, December 23, 2009

Thriving Thursday

In 2 wks, I will be leaving for another trip to The National Institute of Health for surgery. I am both excited and nervous for this trip, and I know the outcome will be worth everything I have gone through to get there.
I have what's called Glomus Tumors. These painful little suckers are fairly common, with my disorder, Neurofibromatosis, but I have yet to come face to face with anyone else who has suffered from these things.
When I visited NIH, back in July of 2009, I had the privilege to meet one on one, with a doctor who specializes in Neurofibromatosis. I got to ask questions, and let every frustration pour out of me, about the health care I have gotten] . It was an amazing visit, and I had a lot of my questions answered.
During on of the discussions, Dr. Stewart asked me if I had any pain in my fingertips, or toes. I hadn't mentioned this to him, because I really hadn't thought it was related to NF at all....but to my surprise, it had everything to do with my NF.
I was sent for an MRI of my left hand and it was confirmed I had these tumors that a small percentage of NFers have. (Lucky I was asked if would be interested in coming back to NIH to have the tumors, here I am, 6 months later and VERY ready to have this done!

A week away from the family is both a blessing and a curse. I'm scared to go and leave things here in Washington. Not that my family can't handle things...I know they can, I guess it's just the control freak inside of me that wants to be sure everything is handled for the family.

I will try to keep my mind on the task at hand, but I know, even being on the other side of the country, I will be thinking about my hubby and my kids here at home and missing them so much.

For now, I can enjoy the Christmas season, and soak it all in. Living for the moment, just like good ole Frosty the Snowman.

Merry Christmas Friends

Whacky Wednesday

10 Reasons Why Women Would Like to Be Santa Claus

  1. There'd be no more early morning decisions about what to wear to the office.
  2. No one would bother to ask Santa Claus for a ride to work.
  3. Buy one big brown belt and you'd be accessorized for life.
  4. You'd always work in sensible footwear.
  5. You'd never be expected to make the coffee.
  6. There'd be no need to play office politics; a hearty ho-ho-ho would remind everyone who is the boss.
  7. Juggling work and family would be easy. All your children would adore you; even your teenagers would want to sit in your lap.
  8. You'd never take the wrong coat on your way home.
  9. You could grow a tummy the size of Texas and consider it a job requirement of a funny Santa Claus.
  10. No one would ask to see your job description.

Santas Nicked?

A website called 'The Smoking Gun' has rounded up pictures of real felons who look like Saint Nick.

Saint Nick

Tuesday, December 22, 2009

Turn it around Tuesday

Frosty the Snowman

He was a jolly happy soul! Even though he knew the sun was hot, and that he'd melt away, he still wanted to make the most out of his day. So he said "Let's run and we'll have some fun", and played and laughed until the day was over.

I wish I was more like Frosty.....with his corn corncob pipe and button nose, and two eyes made out of coal.... although he was a fairytale (so they say) The children believed in him so much, they made him real.

My goal this season, is to laugh and play...To not worry about what tomorrow will bring, and to have fun in the moment.

Thanks Frosty, it's time to make some SUGAR COOKIES!!!

Sunday, December 20, 2009

Motivational Monday

It came without ribbons,
It came without tags,
It came without packages, boxes, or bags.
Christmas can't be bought from a store...
Maybe Christmas means a little bit more.

I love Christmas so much! We have been blessed this year (and years past) by the graciousness of others. Thank you so much to those who have made this Christmas one we will never forget!

I love this...and I thought I would share it with you.

True Meaning of Christmas

Just a week before Christmas I had a visitor. This is how it happened. I just finished the household chores for the night and was preparing to go to bed, when I heard a noise in the front of the house. I opened the door to the front room and to my surprise, Santa himself stepped out next to the fireplace.

"What are you doing?" I started to ask. The words choked up in my throat and I saw he had tears in his eyes. His usual jolly manner was gone. Gone was the eager, boisterous soul we all know. He then answered me with a simple statement . . .

"TEACH THE CHILDREN!" I was puzzled. What did he mean? He anticipated my question and with one quick movement brought forth a miniature toy bag from behind the tree. As I stood bewildered, Santa said, "Teach the children!

Teach them the old meaning of Christmas. The meaning that now-a-days Christmas has forgotten. "Santa then reached in his bag and pulled out a FIR TREE and placed it before the mantle. "Teach the children that the pure green color of the stately fir tree remains green all year round, depicting the everlasting hope of mankind, all the needles point heavenward, making it a symbol of man's thoughts turning toward heaven."

He again reached into his bag and pulled out a brilliant STAR. "Teach the children that the star was the heavenly sign of promises long ago. God promised a Savior for the world, and the star was the sign of fulfillment of His promise."

He then reached into his bag and pulled out a CANDLE. "Teach the children that the candle symbolizes that Christ is the light of the world, and when we see this great light we are reminded of He who displaces the darkness."

Once again he reached into his bag and removed a WREATH and placed it on the tree. "Teach the children that the wreath symbolizes the real nature of love. Real love never ceases. Love is one continuous round of affection."

He then pulled from his bag an ORNAMENT of himself. "Teach the children that I, Santa Claus, symbolize the generosity and good will we feel during the month of December."

He then brought out a HOLLY LEAF. "Teach the children that the holly plant represents immortality. It represents the crown of thorns worn by our Savior. The red holly berries represent the blood shed by Him.

Next he pulled from his bag a GIFT and said, "Teach the children that God so loved the world that he gave his begotten son." Thanks be to God for his unspeakable gift.

Santa then reached in his bag and pulled out a CANDY CANE and hung it on the tree. "Teach the children that the candy cane represents the shepherds' crook. The crook on the staff helps to bring back strayed sheep to the flock. The candy cane is the symbol that we are our brother's keeper."

He reached in again and pulled out an ANGEL. "Teach the children that it was the angels that heralded in the glorious news of the Savior's birth. The angels sang Glory to God in the highest, on earth peace and good will toward men."

Suddenly I heard a soft twinkling sound, and from his bag he pulled out a BELL,. "Teach the children that as the lost sheep are found by the sound of the bell, it should ring mankind to the fold. The bell symbolizes guidance and return.

Santa looked back and was pleased. He looked back at me and I saw that the twinkle was back in his eyes. He said, "Remember, teach the children the true meaning of Christmas and do not put me in the center, for I am but a humble servant of the One that is, and I bow down to worship him, our LORD, our GOD.
Merry CHRISTmas!

Friday, December 18, 2009

Freaky Friday

As promised....another Freaky Christmas Song.

A few weeks ago my husband showed my kids this video. They thought it was hilarious....I did too....except when my 9 yr old asked me about the song that was being played at church.
The church put on a awesome rendition of "Carol of the bells".....My daughter leaned over and asked her dad, if that was the "ding the fries are done song"....

Happy Holidays

Wednesday, December 16, 2009

Thriving Thursday

Dealing with Disabilities

I have written about my son, Braden before, but I wanted to just write about how super proud I am of him.

This past year, we decided to pull Braden from the "mainstream" classroom, and place him in a more one-on-one environment.
This was THE BEST decision we could have made for Braden. Not only is he much happier, but he is also retaining much more than he has is previous years.

Since Braden's diagnoses of Neurofibromatosis, we have had so many things to overcome. The learning disability has been with Braden since pre-school, but now that he is in 6th grade, he is more aware that he is not like the other kids. This wouldn't be a bad thing, but in years past the other children knew he was different too....and tormented him for it.

Braden would come home crying, telling me that he had no friends, and the other kids would call him names. I remember one incident, where I actually confronted the mother of one of the kids that was tormenting Braden...."Oh, he's just doing what boy's do, your son needs to toughen up."

Despite all of the problems at school, Braden continues to THRIVE with a positive attitude. He is always willing to face things head on, and never backs down from a challenge. (Even when that challenge is another child calling him "retard" or "weird".)

Every time I look into his baby blue eyes, I see strength. Someone who won't let a diagnoses take him down. A boy who is sweet and caring and a joy to have for a son. A kid who rocks at video games, who loves to take care of his baby sister, and a silly guy who comes crashing and pounding in, making his presence know, during family meetings.

As we battle Neurofibromatosis, we are educating the school staff and making a difference! We are teaching Braden that he IS IN FACT DIFFERENT...and how that's a VERY good thing!

Mommy loves you kiddo!

Tuesday, December 15, 2009

The Grinch

Turn it Around Tuesday

Who was 'The Grinch'? A Who down in Whoville who was born a little different? Someone with good intentions, who only became bad after he was treated so poorly?

I watch this movie several times a year (thanks to my children) and always take the side of The Grinch.

I remember a time in school, when my hair was cut short and permed...on top of the fact I was a short, chubby tomboy! I walked into the classroom and tried to hold my head up high. But it didn't matter...The kids laughed and pointed at me. I ran out of the classroom that day, determined to never go back.

The Grinch ran away too. To the mountain tops in Whoville and became a scary legend. A Who, who would never fit in. I can't help but feel sorry for him. But that's where The Grinch seems "happy" (I would be happy there too, just to get away from everyone). I have had to deal with people making fun of me my entire life. Being stuck in the real world - I DID go back to school versus hauling myself away into the Santa Monica Mountains!

The Grinch learns, (thanks to the insight of Cindy Lou), that he doesn't have to be bad. Cindy Lou teaches the whole town to see The Grinch as a "Who", not as someone who is a green and grumpy misfit, but only after she teaches The Grinch to see himself as a "Who" first as well. Once he stops stepping on others in retaliation for their stepping on him, he turns around and saves Christmas after all (nevermind that HE was the reason Christmas needed saving in the first place). The town embraces their new citizen and the spirit of Christmas is learned by one and all.

I wish it were that easy. But it doesn't have to be THAT hard. Who teaches us to make fun of things that are different? Does it feel good, to tear someone else down? It must, right? Or we wouldn't do it? Face it, it's easier to make yourself taller when you step on other people. That's the lesson learned by bullies of all ages.

Whether you've been bullied, have been a bully, or both (and haven't we all been both, at one point or another), the real solution comes in a change of thinking. When you step on others to get to the top, you're alone on your plateau, which is only exciting for a short time. When you choose instead to give as many people around you a step up, you have that many more people willing to pull you up with them in thanks. Instead of hiding alone in false triumph, you are able to party with many, knowing YOU have made a difference.

Call it the Christmas Spirit, or the Thriving Spirit - now is the time for all of us to give each other a boost up. Are you joining the party?

Happy Holidays!!

Sunday, December 13, 2009

I want to be like you....

My 13 year old daughter looked at me, after I told her I was going back to NIH (National Institute of Health) -- "I wish I had NF, like you, so that I could go with you."

Her eyes filled with tears and I just hugged her.

She had no idea what she was really saying, she just wanted to be close to me. But her words melted my heart.

What frustrates me is that she DOES have NF - but like me at her age, she doesn't appear to have any remarkable symptoms other than the cafe au lait spots. Dealing with Rachel and Braden seems easier, since they have specific needs to address, but I battle with getting Bailey fully checked out, for fear of what we might find.

It may sound stupid coming from someone claiming to 'Thrive with NF', but I battle with the same sense of denial about Bailey that I battled with for years about myself.

We've got her scheduled next year for some initial tests, and hope to get some answers. I know she has NF, and I've told her she does. It's time for both of us to discover what that will mean to her future health, instead of hanging on to the hope that it'll just go away.

Thriving isn't easy. It isn't always consistent. It's a goal to live up to - an attitude that must be reinforced. The nice thing about Thriving, though, is that even when you fall off the wagon for a day, or create a blind spot in your journey, all you have to do is take a new action to get right back into the zone.

I pray Bailey never has to go to NIH, or deal with the many issues I and so many of you struggle with every day. But if she does, I want her to know that I AM here for her - eyes wide open and Thriving attitude in place.

Are YOU Thriving today?

Saturday, December 12, 2009

Christmas Party!

We went to the church Christmas party today. I'm always amazed with the folks that put these kind of things on. It was very organized and the kids had a blast!

Santa Claus came to visit and the kids all got to sit on his lap. Riker told me that he didn't need to tell this Santa what he wanted, because he had already written Santa an e-mail. :)

Brooklyn kept her distance, but kept spying Santa from behind a chair, or from behind my legs. We kind of forced Brook up onto Santa's lap, and she wasn't too happy about that.

Sorry Brooklyn, but it's tradition! :)

Braden thought Santa was really nice!

"Geez, Mom....Aren't I a little big to go on Santa's lap?"

Rachel loved Santa!

Thursday, December 10, 2009

Freaky Friday

O Holy Night
sung by Eric Cartman

As promised, here is another 'Freaky' Christmas song

Happy Holidays

Tuesday, December 8, 2009

Whatever Wednesday

Man I just love Christmas time! I can't get enough! I started decorating this year, the day after Halloween! I took down all the pumpkins and fall stuff, and started putting out the Santa's and Snowmen.
Christmas to me is so magical, I just wanted to make it last as long as possible. :)
Every year when I decorate, I look back to the Christmas before, and then all the time between. It's been quite a year!
This year was filled with MRI's, CTScans, kidney problems, Tumor in the lungs scare, Rachel's brain tumor, Rachel's vision problems, Braden's headaches and MRI's, Braden's tumors, My Hydrocephalus, and crazy wacky doctors, who don't listen, my own brain tumor and vision/hearing problems....MAN, that's enough for a lifetime!
But even as I look back on all of that, I feel blessed. I still have my kids to hold and squeeze. I still have them begging to peek at "just one" of their presents.

Through all the pain and heartache this year brought to our family, it has brought much more happiness. This year has made me realize that I need to slow down, and accept help when it is offered (even though this is VERY hard for me to do)

I have also discovered my THRIVING attitude, and created a blog, where I workto bless people's lives and make a difference, even in the smallest of ways. I know my NF families have made an impact on me, and I am so blessed to know you all.

Happy Holidays

Monday, December 7, 2009

Turn it around Tuesday


Today we are turning things around by educating folks about Neurofibromatosis! The next couple Tuesday's will have some trivia questions that I would LOVE for you to try to answer. Let's get the word out and tell people about NF!
Education = Power!

"Education is not the answer to the question. Education is the means to the answer to all questions."
-- William Allin

1> Neurofibromatosis has been classified into three types. Can you name them?

2> What is THE MOST common feature of Neurofibromatosis Type 1?

3> True of False "NF" affect males and females equally?

4> True or False "NF" is very contagious?

5> How many people WORLD WIDE does NF1 affect?

6> What is THE MOST distinguishing feature for "NF2"?

7> What was the name of the man commonly known as "THE ELEPHANT MAN"?

8> How many people WORLD-WIDE does NF2 affect?

9> Which chromosome does NF1 affect?

10> How many people can YOU personally educate about NF?

One of the greatest gifts we have, is our voice. With our voice we can talk to others about Neurofibromatosis. We don't have to fear this disorder. Each day may bring us challenges, but it also brings us a new opportunity to teach someone.
Go out and use your voice today....make an impact on someone and talk to them about Neurofibromatosis!

Sunday, December 6, 2009

Keepin' it Real

Motivational Monday

I was 8 years old when I stopped believing in Santa Clause. One day while my mother was at work, I went through the house to sneak a peek at any presents I could find.
When I finally found my mother's hiding spot for the gifts, I very carefully unwrapped a corner of each box, just enough to find out what I was getting. I made sure to tape it back, just as it was, to make sure I didn't get caught.
When Christmas morning came I ran out to the living room, only to find the same exact gifts under the tree, that I found under the bed, the week before.
"Love Santa" was written on the tags, with handwriting that was all too familiar. The excitement ended for me that day, when I realized that Santa didn't exist. I was mad and told my mother I didn't want the gifts, because I knew Santa didn't really bring them.
I wanted the kind of Christmas that you see in the movies....I had dreams of waking up to a houseful of delicately wrapped presents, and bows placed around the ones that were too big to wrap.
I wasn't aware of how much that hurt my mom. She was doing her best--giving everything she had to me. The next few Christmas' would be spent away from my mom. I remember how different life was with my dad and his new wife. We basically got anything and everything we wanted.
Christmas morning would come, and we would all run downstairs to find a room filled with gifts. We'd race and tear open the packages and it would all be over so quickly. I remember looking back on the Christmas' with my mom, and missing it so much.
Sure I didn't have the room filled with gifts, but I had a mom who tried her best and gave everything to me. She sacrificed and worked so hard. My mom was dealing with so many stresses. From Mike's multiple medical issues, to my own 8/9 yr old neediness. I didn't understand it then, but I understood it much better, when I saw how different Christmas' were away from her.
Over the years, I have learned, that it doesn't matter how big or small the event is, what REALLY matters, is who you spend the event with.

Happy Holidays

Thursday, December 3, 2009

Freaky Friday

The Fridays leading up to Christmas will have a posting of my favorite Christmas songs....done in a Weird...Freaky...Crazy way.

Oh Holy Night...

Wednesday, December 2, 2009

Thriving Thursday

Defective: Adj; Meaning: Imperfect form

"In Neurofibromatosis, a genetic defect causes these neural crest cells to develop abnormally. This results in numerous tumors and malformations of the nerves, bones, and skin." The Medical Dictionary

I know about Neurofibromatosis. I know how the Medical books define it. But when I hear the word "defective" or "disease", I cringe. I don't label myself as defective! "Defective" is something you take back to the store for a refund!
I refuse to wear that title over my head!
Having Neurofibromatosis is challenging enough, wearing a defective sign around our neck is not something most of us should have to do...certainly not me. Next thing you know, you'll be walking down the street, and some Southern guy with a flannel shirt will come up to you and say "You're defective - Here's Your Sign!"
I for one, have no intention being talked down to, felt sorry for, or defined by a 'Defect'. Call it a mutation (after all, my kids think I'm a super-hero). An alternative genetic alignment. But not a defect.