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!

THRIVE ON!

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.

FACT #1

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. 

FACT #2

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.

THRIVE ON!

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."
-Kristianne


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


THRIVE ON