Monday, December 11, 2017

Kristi Strikes Back

Update on Yoda!

Sometimes, things are not what they appear to be...Have you ever been told that..?  If I believed everything a doctor has told me..I'd probably be living secluded someplace...Never venturing outside.

I had a follow-up with an OB/GYN the other day....Almost exactly a month after a previous doctor diagnosed me with Yoda.  Measuring 9cm at that time, I was told that a hysterectomy was in my near future.

Finally - a reason for the pain.  I wasn't too upset about losing my uterus...I mean I have been blessed so much by it, so the fear I was feeling, wasn't about that...It was just about --well--losing a body part....The body part that had worked so hard for me.

This OB/GYN wanted to perform all her own tests and imaging and we found that the "mass" had grown 2 CM....That's A LOT.  She ordered a biopsy right away...

I was nervous.  Well...more like petrified!

The Dr. gave me a paper napkin and had me undress.

The nurse brought in the instruments...and I sat there for what seemed like hours....

So the doctor comes in...explains the procedure and gets to it....  I'll spare you the gruesome details...

During the biopsy a gush of "water'....What the heck!?!

Long story short....This "MASS" was fluid when a womb fills up with amniotic fluid when there is a baby....But I had no baby....just the fluid...A Blighted Ovum.  No Tumor. 

After another ultrasound showed the "mass" was now gone....the doctor explained how the human body is "freaky"...and does things that can't be explained.

I do still have the "friends" of Yoda....Fibroids...that will be watched...And we will wait for the biopsy to come back before doing anything else.

This is GOOD news.  It made me realize that medicine isn't perfect....Doctors aren't perfect.

Merry Christmas!!

Thursday, December 7, 2017


My dear friends.  This is Yoda. 

And so is THIS.

All 11cm of it.

'My' Yoda however, doesn't have a light saber.  No super powers.  And no wise or prophetic words.

It's a tumor.  A mass destroying my insides.  Making me in severe pain....And I need it GONE!

I first learned about Yoda several weeks ago.  After a VERY slow referral process, I am off to the OB/GYN to figure out how to best deal with Yoda.

I'm praying they just schedule surgery right then and there...I mean why wait...?  But I have this fear, that the DR is going to be like every-other-doctor and tell me that we are going to 'watch-and-wait'....God I hate that phrase.

It either means the DR has NO clue how to handle the situation....OR they have no clue WHAT the situation even is.

With Neurofibromatosis...I can't tell you how many times we have been told "watch and wait"...I mean...What the heck are we waiting for...?

I know I know...Not EVERY tumor is life threatening...And I also know, that for the MOST part, doctors have our best interest at heart....But at the same time....How can we do NOTHING!?!

I'm going in today - EXPECTING something more than 'watch-and-wait'.  I'll demand it, if I have to!

It's all about YOU taking control for YOU. Demand answers if you arent getting them!

I know - that in the end....this will result in a hysterectomy.  And I'm okay with this.  

Yoda...Sorry I am....Go, you MUST!

THrive On!

Thursday, November 16, 2017

It's a Tumor.

I don't like posting only when there is bad news, but this is where I am.   I had put off going to the doctor long enough.  I scheduled a full physical, including the dreaded vag check.

I have a history of pre-cancerous cells showing up, so I knew I had to do it.

Anyways, I'll spare you the details.

You're welcome.

I got sent to a specialist, who discovered a 9cm mass in my uterus.  I swear, when I saw the images, I thought the doc was tricking me, and it was a baby, instead of a tumor.

It's a tumor.  A baseball sized tumor.  Thanks for nothing Arnold!

So...what now?  Well, I have yet to see a specialist, or a surgeon...or anyone other than the doc who gave me the news....But what's likely....?  A hysterectomy.  A biopsy...Then - who knows..?

The thought of a hysterectomy makes me sad.  Noooo...Not because I want more kids....It's because I already began mourning the loss of something that gave me my beautiful children.  After 3 miscarriages and 6 full-term pregnancies....Me and my uterus have been through a lot....Like a LOT!

How could my uterus betray me like this...?

So, anyways....This is only PART of the reason I have been missing in action lately.  The other part is this job I have....It sucks of so much of my life....And after dealing with the job, my family, bills, etc etc...I feel like I literally have nothing left to give.

I miss writing.  I miss the cool comments I'd get.

But I promise...I will blog my way through this tumor situation...I think it is an important experience to go through, and maybe I can help someone along the way, going through the same stuff.

Thanks to my readers - who still check in on me and my blog...It means a lot!

As Always- Still THRIVING!

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!

  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.