Wednesday, August 23, 2017

Whew. It's been a WHILE!

It's amazing how fast time goes.  Sometimes, it feels like a sneaky little thief.  I blink...And its gone.  Chunks of time.  

I'm worried today.  For the past several years, our oldest son has been receiving Social Security Disability.  He has visual issues, due to a Optic Glioma caused by Neurofibromatosis, severe cognitive deficits and also has spinal tumors that cause back pain.  He 'QUALIFIED' for disability...with LESS issues -- 

But today...I have to fight to try to keep his Social Security benefits, because the system thinks that since these issues have remained "stable" --- He's fine...and doesn't need assistance anymore.

Let me tell you how "STABLE" works with Neurofibromatosis....Bailey, my oldest daughter had a "STABLE" brain tumor while ON chemotherapy....3 months later...That tumor DOUBLED in size!

I have a friend, who has a child on disability....This child's vision was COMPLETELY taken from him - while the tumor remained "STABLE"

I get so frustrated with the system....And how this system can tell me my son "no longer has a disability"....God...I wish!

sta·ble1
ˈstābəl/
adjective
  1. (of an object or structure) not likely to give way or overturn; firmly fixed.



In the world of Neurofibromatosis....Nothing is "stable".  Nothing is "firmly fixed".  Today...I will try to get the system to learn...Try to get the system to see...But in the end - it's up to them.

I know there are those out there who think - if he's stable, he shouldn't be on disability, and that's fine....but there is no way to secure a future for my 19 yr old son.  He can't hold a job that would support himself....And will most likely be living with us, his entire life.

I'm fighting to help give him SOMETHING to rely on....Insurance mostly.  Those of you living in the world of Neurofibromatosis know, that insurance is the most important thing...without it....God -- I can't imagine -

Bailey's chemo treatments...were in the MILLIONS of dollars.

We shall see.  I will update when the system decides

Monday, April 3, 2017

You Can't Wash Away the Cafe Au Lait



Several years ago, after our families diagnosis of Neurofibromatosis, we had a choice to make.  Run from it....Like my own mother did....Or LEARN from it.


One night, I was sharing in the bath-time fun with my daughter Rachel.  She had just come in from outside, and was dirty from head-to-toe!  With the bubbles over-flowing the tub, we began to scrub the dirt.
We laughed because the once clean water, became dirty.

After filling the bathtub back up with fresh water and LOTS more bubbles, Rachel noticed the brown spots all over her body.

This was the first time Rachel had asked about the spots....AND the first time I really ever had to explain them to ANYONE.

She tried to wash the spots off with a washcloth and asked why she couldn't wash them away.

In that moment, I knew I wanted to write something about NF....This blog...The book Thriving with NF....And MORE!!

I explained to Rachel, in a simple way....."Those 'spots' are called Cafe' au lait, and you can't wash them away...."

After drying Rachel off, and getting her tucked in for bed....She asked more questions about NF....So sweet -- so innocent.


The IDEA for a children's book was born that night.  I wanted something short, sweet and positive.   But mostly, easy to understand.

If you are interested in "You can't wash away the Cafe' Au Lait" please go: HERE
The link will take u to AMAZON, where u can download a copy.

Follow little Sammy, as she learns to live with Neurofibromatosis.  

Thrive On!!

Monday, January 16, 2017

Hey Kristi...Where Ya Been?



I know I know.  It's been FOREVER since I have posted a blog.  The holidays....Work....Kids home for almost 3 weeks....My life has been just a WEEEE bit chaotic. Forgive me.



Medically were are in a bit of a lull.  A very good thing, especially with brain tumors!  But, our doctors are taking a very 'hands off' approach, which kind of makes me crazy.  They are supposed to know what they are doing....And trusting this type of treatment goes against EVERYTHING I believe in.  I want a FIX.  I want a CURE.  And I want it NOW!

MRI's every 3 months...And just believing that God has got us in His hands, is the best I can do.

Tumors are scary.  Trying to explain what's happening in our family, to someone who doesn't know the world of Neurofibromatosis is really hard.  

I say "tumor"....they think "cancer" (and yes, I know sometimes with NF, that's exactly what it means)  But generally speaking, NFers have tumors, that aren't cancerous...And that's hard for the average person to understand.

And NF isn't something you can talk casually about.  It's complicated.  Especially for me, living with it, and trying to explain it, while also remaining positive.  I usually get that deer-in-the-headlights type look...As if saying...."YOU HAVE A BRAIN TUMOR AND YOU'RE STILL WORKING...?"

Yes. Yes I do.  

I also have THREE children with various types of brain tumors.

This is OUR life.  This is OUR normal.

Speaking of work.  I got a promotion.  It's a good thing....That has forced me to stretch far outside my comfort zone....Something EVERYONE should do from time to time.  But it has also left me kinda...sorta missing my life BEFORE this job.  

I spend 9-11 hours away from my family....And I truly miss them.  For 2 yrs now, I've handed off all of the 'mommy duties' to my hubby...And he has done a fabulous job...But I long for THAT craziness.  My heart will ALWAYS be a stay-at-home mommy...And I hope that life will fall into making that happen for us again.

One of my New Years Goals is to become passionate about writing again....And eventually get my books out from the cobwebs, and published.  Managing my time, is not something I am very good at...When I'm working, there is -0- time for writing...When I'm home, I am exhausted from working...And when I have a day off...I just want to soak up every second of that time, with things not related to work or the constant medical demands.



Don't worry though....We are STILL THRIVING.  



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