Monday, November 7, 2016

Applying For And Maintaining Social Security Disability

After  being diagnosed with Neurofibromatosis in 2007, I quickly had each of my 6 kids checked out and screened.  3 of the 6 of them were diagnosed shortly after.

Seeing what my older brother Mike went through, in regards to NF, we made the decision to apply for Social Security Disability.  It was a long- semi-drawn out process, but worth it, to make sure I was securing their health insurance.

All 3 were approved.  Rachel, even qualifying for a Make-A-Wish, due to diminishing vision.

We went a few years, with few NF related complications...Which is GREAT....But in the eyes of the government, it raised flags.

For those of you who understand the world of Neurofibromatosis...this is our life, right...?  Sometimes we are okay....Sometimes we aren't.  And sometimes....we simply get by.

We were sent to "specialists" to determine if Rachel still qualified as 'disabled'.  She had a simple and quick Psych Eval, which was given by some Government-sent 20 yr old..who spent 1/2 hour with Rachel and deemed her "cured of her disability".  

No seriously..that's basically what the letter said.

.CURED???  If only, right?!

Keep in mind, Rachel STILL has vision impairments....At the time of testing, her results were not better...Not worse.  Simply "STABLE"....

But again....Those who understand NF know that STABLE is temporary.  STABLE just means, we hold our breath, until the next scan...Until the next complication.

After the letter....I sent in the form to appeal...and got a fast response that the decision was "FINAL"...and to go through further appeals, I'd need a lawyer.  *sigh*

So, we let it go.

I went back to work, and we accepted the decision.

Fast forward to about 6 months ago...

Due for her 'every 6 month' MRI,  Rachel got some bad news.  An NF-related tumor had invaded her Corpus Callosum.  A tumor JUST like her big sisters.  Inoperable...and required Rachel's big sis, to go through 2 yrs of chemotherapy.

CURED?  Not by a long shot.

So now what...?  After meeting with some people who are knowledgeable with the application process for Social Security, we were encouraged to "reapply".

So we did...And now we hold our breath for the determination.

During this process...We have had to go through a few RE DETERMINATIONS for the other kids as well.  We are currently going through a re determination for Braden...My 19 yr old son...who has also remained stable.

He's had a Neuropsych evaluation....A medical exam...But ultimately...He could also be denied any further benefits, and be labeled as "cured"....

What do you do...?  It has been an exhausting process....But we continue to endure it, because I know that it is the best thing for the kids.

If you are afraid of the process of applying for disability, don't be.  Take a breath and just do it.

I am here to offer any support I can....We are all in this together after all.  

Don't Give Up!


Thursday, September 29, 2016

Did You Kiss A Toad?

So, I have stayed relatively quiet here for the last few months.  But today, after hearing about this episode of Scream Queens, it spurred some inspiration.

Overall....I think the episode did what it set out to do.  (I am NOT saying it did a good job)

Aside from the ..."He looks like the inside of a hemorrhoid"....Or the continuous reference to this man as a "monster"...I was impressed with Scream Queens in how they showed the deep emotional struggles of what it's like living with Neurofibromatosis.

The scene in the diner, is what made me get up and open my computer to write this blog post.   I kept screaming at my tv, while watching....

Media...You are one of the most...If not THE MOST powerful tool in educating the public.  And when you blow it...Be prepared for the ultimate backlash.


You referred to the man in this episode as a MONSTER at least 7 times.   This is completely ignorant and mean.  It's no wonder - people with NF don't want to go out in public.  

I am so sick of this bully mentality - People will never change...Especially when we are being shown how to react to people who are different. 


BOILS?  WARTS?   NO!  These are NEUROFIBROMAS.  If you are going to represent a REAL DISORDER....Then REPRESENT REAL FACTS.  Don't mock it or make light of it.

While talking about your patient...You indicated how his life 'must be a mess'....and 'How could he ever find love'....

Seriously.  Well I wasn't a fan of your show anyway....And for SURE won't be tuning into any further shows now.

Let me also say this....At the end, when when our NF1 guy 'almost' gets the kiss....You were right...Looks don't matter...But the damage was already done, as you mocked, ridiculed and ultimately misrepresented THE MOST COMMON GENETIC DISORDER in human beings...

But, hey....You are all about Ratings.  Entertainment.  And MONEY.  What can we expect?

For now...I'm thanking you FOX...for getting me out of my Writers Block.

#thriveon  #Ifoundlove  #amnotamonster

Wednesday, August 3, 2016

Lesson Learned

In 'every day life', my NF stays relatively quiet.  I go about my day just trying to survive the craziness.  I wake up, go to work...come home, spend time with the family...Go to bed, and begin again.

Good days...Bad days....I just take them as they come.

My brother has been dead for a month now...And I still don't know how to accept it.  I'll put on a strong face, but inside I am so sad.  So angry.

I hate that life just continues on, like nothing happened.

Because something DID happen.  The world lost a beautiful person....And it's just not fair!

I know you have probably heard it a ZILLION times....That life is precious and that we should cherish the time we have with the ones we love....And I did.  I cherished Mikey.  He was my best buddy...And I know without a doubt, he knew he was loved by everyone who knew him.....

Which just makes losing him more difficult.

Mike knew he had NF.  He knew he was 90% blind and 50% deaf....He knew he tumors and  a shunt. But he didn't care.  He never let those things be an excuse.

He went out into the world and made people happy.  He wasn't about "stuff" or money.

He just LOVED.  God I wish more people were like him.

Life gives us a fleeting moment to make an impact...And Mikey did that.  I am so proud to have been his sister.  So proud to have learned from him.  So proud to have no regrets when it comes to my relationship with him.


Monday, July 18, 2016

Rest in Peace Mikey

I miss you - Mikey.  Growing up, you and I were inseparable.  I didn't really know much about you, until after mom and dad divorced.

I knew you were sick.  But you always showed strength....To the point, we both forgot about Neurofibromatosis.

You were my buddy.  My best friend.

I will always remember our adventures as 'Bonnie and Clyde'....And the way you took care of me and always made me feel safe.  I hope I did that for you as well. 

You are still in my heart and dance in my mind-
Completely healed and no longer blind.

You courage and strength, Shined so bright-
You earned your wings, and have taken flight.

The tears I have cried,
You've wiped them away-
You hold me close- as you softly say-

"I am free from this world-
My pain is gone-
And if given the choice-
I wouldn't live on."

"This place is awesome-
And you'll be all right-"

"I'll look after you from Heaven's height."

I love you Mikey.

Saturday, June 18, 2016

Thriving Takes Action

As a human being, it's easy to focus on the negative things in life.  I mean let's face it, life is HARD! And sometimes, life is unfair.

I didn't grow up as an overly optimistic person.  In fact, there are times when I think I am hard-wired to be a frustrated- angry woman....Just like my mother.  (There are even times, when I actually think, that way of life would be easier)

I have to work HARD....REALLY HARD sometimes to push out all of the negative - toxic feelings I have.

I got this e-mail from a father, who is having a very difficult time accepting the diagnosis of NF for his 3 yr old son.  He's angry (I understand) And he can't see the good in anything right now.  His words "I feel hopeless".

I feel this way too.  I sink into despair.  The amount of guilt I feel sometimes, when it comes to NF is unbearable.

But then what...What do I do with all those emotions?  Where do they go?

Those emotions - ALL OF THEM - are inside of me.  They are real.

But they transform into the energy I need to push myself forward, instead of allowing them to swallow me into a pit I cannot get out of.

HOW?  It's a very deliberate effort.  I recognize what it feels like....And what it looks like when life's "Stuff" starts to take its toll....And I know that everyone around can feel and see it too.  So...I make a choice.

It's like that saying-
"Whenever you do a thing, act as if all the world were watching". Thomas Jefferson

Positive thinking engages ALL me.  It puts ME in the drivers seat.  Puts ME in control of MY life.  And when other people notice - and recognize my efforts, it just makes the NEXT time I am facing a difficult situation, a little easier.

"THRIVING Takes ACTION-  When you CHOOSE to TAKE ACTION...Instead of letting life act upon YOU....That's when you THRIVE!" - Kristi Hopkins


Wednesday, May 18, 2016

I Didn't Know There Was Anything Wrong With You.

I was talking to my manager about my family, specifically why we have all these doctor visits that include MRI's, blood draws, vision checks....

I wasn't asking for time off for these appointments... but he was curious, because I talk a lot about being at the doctors with my kids..."Are they sick?" he asked me.

Well.  Technically NO.  They aren't "sick".  

He is the same manager who found my keynote speech in the office, read it and spend some time googling me and Neurofibromatosis...So he was completely receptive.

But as I explained NF in more detail, he just looked more confused.

He said to me...."I didn't know there was anything wrong with you...."

This rubbed me the wrong way. It didn't make me ANGRY, but it ANNOYED me enough that I took a few moments to responded to him...."Having NF doesn't mean there is anything WRONG with me.  It just makes me different.  I deal with things that you don't have to.....But at the same time...YOU deal with things that I don't have to deal with."
The old saying is 'we all have our crosses to bear'. For some people, the worst thing they deal with from day to day is getting cut off in traffic, or spilling coffee on their blouse. For others, it's a fender bender, or not enough money at the end of the month. For those with NF, our perspective tends to be broadened to include what the world might consider 'tornado-level' results - tumors, chemo, deformations, and more.
But people who don't have NF have their own stuff, and to them it can be just as bad. In some cases, it IS just as bad. In some cases, it's WORSE. Disease and Death touch us all.

It doesn't mean anything is 'wrong' with us. It just means that this is our life.
  Saying something is 'wrong' with us is the world's way to label us, to label anyone too different, really. To compartmentalize us, so they don't have to think about it - they can dismiss us by just saying something is 'wrong' with us.

But they can only succeed in doing that if we allow it - if we shrink into those compartments, instead of living the lives we deserve, and being the people we want to be. 
NF is just PART of my life.  Yes, it intertwines with everything I do, and everything I am...Yet it isn't the thing that defines me.

Don't let it define YOU.

Thrive on.

Friday, April 15, 2016

Why Did God Make Me Ugly?

I was emailed a question a couple weeks ago from a woman suffering an extreme form of Neurofibromatosis.  Attached was a photo.  In the e-mail she asks the question..."Why did God make me ugly?"

How do you define UGLINESS?  For me, when I think of that word, it doesn't have anything to do with appearances.  Ugliness is an action.  Same goes for the word BEAUTIFUL.

When I looked at this woman's photo, I didn't see ugliness.  I saw strength.  But I definitely connected with how she feels.

She asked me questions about how I feel about having NF...And if my love life has suffered.

"My husband doesn't love me anymore.  And I find myself pushing him into an affair....Maybe then he will be happy."

My heart broke for this woman, and I have been struggling with how to respond to her....which probably also can explain my hiatus from blogging.

I tend to run from things that make me uncomfortable...And NF, despite my show of bravery on-line...Does make me uncomfortable to talk about.

It's mostly because people just don't get it.  To them, tumors mean cancer....Cancer means sick...Sick means death....And death means sympathy....Sympathy means pity  etc etc etc....

NF is not something that can be talked about casually.  It's complicated, and goes beyond, 'bumps on the skin'.

The thing is  I find myself asking God 'why' a lot.  Why do I have to deal with this?  Is this a form of punishment?  Why do I have to be strong?  Why won't God just wiped this disorder away?

My NF 'isn't THAT bad' right now....But what's going to happen in 5 yrs? 10?  20?  Will my "THRIVING" turn into frustration, anger and bitterness?   Will I be asking if I am still worthy of love?

Honestly I am scared to death of this happening.

But for now...I am trying to build myself up to be strong.  Build up the people who are around me to not judge...But instead LEARN.

I hate that the woman who emailed feels ugly...And feels like her husband doesn't love her.  My advice is to sit down and talk about this.  People fear what they don't understand....And maybe its just that the husband is scared.  So he pushes away.

It's easy to run.  It's hard to face reality.  It's hard to teach.  But in all those things that hard...When we face them....We grow.  And we can grow to love ourselves....Once we love ourselves....Others can start to love us.


Wednesday, March 9, 2016

Am I Making A Difference?

It's hard to believe that 2 weeks have gone by since I was in Canada.  It was such a heartwarming experience...And I find myself longing for more.

While I was at the symposium I had this woman come up to me, shake my hand and tell me how much she liked my talk.  She pointed to her daughter - who was sitting by herself, with her baby.  "Can you go over and talk to her...?"

So I did.  I sat with her.  Told her that her baby was beautiful...That NF wasn't the end of the world...That her baby is looking to HER ..And that to HIM...She was his hero!  

I tried.

But....I don't think any of my words helped.  

To HER....This was the end of the world.  To HER, her baby was 'sick'.  To HER, it was all her fault.

I felt bad for her....Mostly because I know exactly how she feels.

I hate NF with so much passion, that sometimes, I just want to throw my computer against the wall, and give up on all this THRIVING crap.


Then I see my kids.  I see them looking at me.  To MY kids...I am their hero.  The one they look to - and learn from.  I see MY attitude reflecting in them.  And THRIVING has become the most important part in how we cope with this diagnosis.

My words may not have impacted this young woman....But....Maybe they did.  All I can do, is set an example....Share my story and live my life.

And on those days where I get so frustrated that I want to give up.....I DON'T.


Monday, February 29, 2016


I am still coming off my high, from the amazing weekend I had!  I just can't get enough of this stuff! Sometimes I wish, I could just clear my schedule, and do this full-time!


Why can't I...?

I get so pumped up when I am able to share my story with people....AND have my story actually have an impact!  It's an amazing feeling when someone comes up to you, after you do something like this, and have THEM QUOTE YOU!

Words matter.  And I am so blessed to have people who want to hear what I have to say.

It's quite humbling!

My journey in THRIVING with NF....Has been a long, hard, sometimes even painful road....But at the same time, it has been triumphant and satisfying!

I wanted to THANK Desire'e and the entire BCNF group for having me out to your symposium.  I am blessed to have been able to speak and humbled by the response!

I am READY for MORE!


Wednesday, February 24, 2016

Vancouver, I Can't Wait to Meet You

I'm so excited!  In a few days, I will be in Vancouver British Columbia!

I have been invited to share my story about how Neurofibromatosis affects my life, as well as the lives of my children....And how we THRIVE throughout the many UPS and DOWNS of this disorder!

What does THRIVING look like?  I get questions like this all the time.  And my simple answer is this....THRIVING means taking control over your actions.  We all get angry...frustrated....sad...ETC....
But what happens after that...?

Thriving for ME....means I use that energy for something GOOD.  Something POSITIVE.

Try it.

I know it's hard to be positive all the time, when faced with the problems of such a complicated disorder...But, it's not about being positive all the time....It just about changing the way you respond....Changing the way you let things affect you.

This will change the way you are treated...I promise you!

If you act like a victim...You will be treated like a victim.

I don't always have it 'all together'...I have days where I shake my fists at God....But, then...I bounce back and realize my attitude and actions are MY RESPONSIBILITY!

Let's THRIVE together!

Thursday, January 21, 2016

The Challenge of Being Challenged

I remember my first roller coaster. I was 8. I stood before the GINORMOUS set of tracks, that twisted and turned....And even went in a loopy loop. As I stood in line, with my older brothers, who were SO excited -- I silently prayed that something would happen to get me out of this....

Maybe I wouldn't be tall enough....

Maybe I could pretend to be sick....

Even today, I build in a THOUSAND excuses for just about about everything I do. Don't do. It's AMAZING....The amount of excuses I come up with. Now these are legit....Excusable excuses, and get me out of doing anything I don't really want to do....So I'm not really hurting anyone.

Or am I...?

Have you ever done anything that makes you scared...? But you do it anyway...? Like some unknown force is drawing you to the other side of that scary thing...?

We get comfortable in our lives...At least I do....And the MOMENT I am challenged in any way....I want to fall apart. To withdraw. To run. (In the opposite direction!)

This is true with everything in my life.

Exercise - Speaking - Church - Marriage - Kids (I could go on and on)

I don't like to be challenged....Or taken out of my comfort zone.

Heck, just putting myself out there online is sometimes a challenge. (And I have this computer screen to hide behind)

Challenge is difficult. It's MEANT to be. It's meant to steer you in a direction that makes you grow...And learn....And even sometimes fail (which is where the learning comes in)

When it was our turn to get in the roller coaster car....My brothers sandwiched me, and pushed me forward! I WASN'T READY!! I NEEDED MORE TIME! I WAS SCARED!

I was SURE I was going to fall out......I was sure that the roller coaster was going to get stuck....And that I would need to be rescued.

We sat down in the car...I was belted in....And AWAY WE WENT.

I remember shutting my eyes and screaming. Hanging onto the bar in front of me for dear life! I remember my brother telling me and he wouldn't let me fall out.....He put his arm around me..."See...? I've got you."

But halfway through our ride....BOTH of my brothers hands were in the air.....And I was left with just a belt and a bar to protect me!

I screamed louder and LOUDER....

And before I knew it....The ride was over.

As my belt was released...I opened my eyes...Looked around.....I was okay. I survived.

"Let's GO AGAIN!!" I squealed.

We went on that roller coaster 7 TIMES!

There's nothing wrong with being scared of the challenge – as long as you're willing to feel the fear, and do it anyway. It's all part of Thriving. With NF, with anything.

I may be afraid, but hey, BRING IT!

Thrive ON!

Thursday, January 7, 2016

Thriving With (or Without) Resentment

Today....I woke up with every intention of it being a GOOD day! I have the day off from work....I was going to go to Crossfit....Clean my house (Christmas Break has left my house in a state of craziness)....Bake Riker's Birthday cake....AND, catch up on my blog....

BUT....I woke up sick. I logged into my email and the first thing I see, is a comment on one of my posts, from none other than ANONYMOUS. It's been a LONG time, since 'anonymous' has left any comments for me....Here's what they had to say today. "The fact that you can willingly and knowingly pass your disease down to six children is sickening. You are the true definition of Selfish."
Thank you very much ANONYMOUS, for again waking me up out of my writers block. The first word that came to my mind after reading this comment was resentment. It's a very powerful word...And it got me thinking.

Do I resent my mother for choosing to have me...?
Do MY children resent me?

When I was about 8 years old...I began having these headaches. I was so scared that they were like my brothers headaches. THOSE headaches brought my brother to the hospital. THOSE headaches caused my mom and dad to fight. THOSE headaches were caused by something I couldn't possibly understand being that young.

So, I kept quiet about them. I was lucky. Most of my NF symptoms were not noticeable. OK...So, maybe "Lucky" isn't the right word to use...Because my symptoms WERE noticeable. To those actually trained to see them, that is. I grew up, believing that I didn't have NF. My parents, even doctors telling me that my older brother was the only one in our family who DID have it.

I witnessed the guilt - it filled my mother when SHE realized that SHE was the one who "gave" my brother this horrific 'disease'. She couldn't cope. The complications that my brother faced, tore our family apart.

But - MY NF...Didn't exist. Even though, it did.

After being OFFICIALLY diagnosed with NF after my last baby was born - well, it was too late. That was going to be our last baby anyway, and the only thing to do was to move forward, get everyone checked out, and live on. It was out of all of this that Thrivng with Neurofibromatosis was born - because that was all I had available to me, and my family.

So - Anonymous - if you actually read my blog, you'd already know this. But hey, hide behind your keyboard and feel good about slamming me, if that's what makes you THRIVE.

As for me - IF my children end up resenting me...I will deal with that. But RIGHT NOW....We are a family that has grown together....We are happy....We are THRIVING! I should not have to defend my choices...Or make excuses for what I do. I am proud of myself. I am doing my best to raise my children to be proud of who they are and what they do. If you have a problem with THAT....Let's talk. And anonymous....Let go of some of that anger. THRIVE ON!