Monday Vlog!

Two down -- More to come...

Today I used my web cam on my computer....Not liking it at all!  Not sure what's up with the lagging and choppy-ness.  Blah.
But ....I am posting anyway....This way I can see the progress I make, as I get better at these! :)

The OCD part of me wanted to just delete it and start over.....So this is a BIG thing for me!!

Please comment and give me some more ideas --

Video Blog Monday!

2015 has gotten off to a very busy start....I have so many goals for this year!  One of those goals is to get myself out speaking about Neurofibromatosis...So to kick that goal off, I wanted to start a weekly VIDEO BLOG!

I've done this before...But "things" always seem to get in the way -

Please respond as to what you would like to see in my video blog....Any questions you have? I need IDEAS so that I can keep this going :)

Who's That THRIVING Girl?

My hubby has a blog and it's not a weight loss blog.  But he faithfully checks in with his readers about once a week, to keep him accountable for how he is doing on his journey with weight loss.  And I will say...He has done AMAZING!  Sure - he has more "off days" than I do....But, I am so impressed with his focus and dedication to a healthier him! Check him out HERE

He and I have essentially been on the same "diet" for the last 2 years.  We have been low-carbing and working out at Planet Fitness...And I found my sweet spot in doing kickboxing a few times a week....

But today....Was the very first time we actually worked out TOGETHER.  Him spotting me....Then me spotting him.

It was amazing!  Sure we have been at the same gym....at the same time...and occasionally catch each other's eyes from across the floor....But today was different.

I felt Supported and Encouraged.  ( I feel this way a lot...but sometimes a little something EXTRA is needed when it involves weight loss )  :)

An amazing switch, from how I feel when I workout alone.

Without the LOVE and ENCOURAGE from friends, family and people I don't even know, THRIVING would be just a dream....I wanted to THANK ALL OF YOU....The people who leave encouraging comments....The ones who "anonymously" read and walk away feeling better about life, the many who defend me when someone is less-than-nice...and even the ones who are frustrated and angry with life....ALL of you have helped shape me into who I am today.

Feeling a bit MORE THRIVING than usual!

Enough is Enough

Enough is Enough!

I quietly walked into my two younger girls' room, to kiss them goodnight. I managed to make it in the door, past the closet, when it happened....

My feet got tangled up in the mound of dirty clothes and I did that crazy dance, to try to keep myself from falling over. I grabbed at the closest thing I could, which happened to be a hanger, that was attached to another, then attached to another, that was hanging from the closet rod.

SNAP!!!

The hanger broke and I landed in a pile of Lego’s...Actually think it WAS a castle, that was now crumbled beneath me!

As I steadied myself, I looked around my children's bedroom and realized I have lost all control. For WEEKS I had been telling my girls to clean their room. I'd threaten them with “CLEAN YOUR ROOM OR I'LL THROW EVERYTHING AWAY!”

But they knew that I would never do that.

The next morning...I laid it out. I gave the girls a time limit. “Two hours to get your room clean. If it is not clean, I will go in and bag up the remaining stuff.” They said they understood...and went to work.

An hour went by and I checked on their progress. The girls were making none. Arguing and complaining. I reminded them of what would happen if the job was not done.

(My girls are 10 and 5 and have been shown HOW to clean and put away...they were perfectly capable)

After the two-hour time limit expired....I opened the door to the bedroom, and saw that nothing had been done, from the last check-in point.

I knew that follow-through HAD to happen!

I went into the room with two kitchen sized trash bags and began to put in everything that was on the floor. The contents FILLED both bags. My girls were crying and very upset. To them...life was over.

The TV and computer were probably the most traumatic losses.

“What are we going to do now....?” my girls cried.

My hubby and I held our ground.

When bedtime came around, we sent the girls to their room SURE that there would be some kind of trauma from not having cartoons to watch....But instead....Laughter and excitement came from the emptied room.

“This can't be good...” I said to my hubby

I went down to check on what was happening and found my girls playing this game.....My 10 yr old was holding a drawing she made, of a Wii remote...While my 5 yr old was standing being a cut out frame they had made....

“We're playing the Wii Mommy!”   Brooklyn is pretending to be the game, and I'm controlling her...I laughed with them and told them how creative they were.  An hour ago, life was over....And now....They had come up with a creative way to solve their problem.

That's what I love about my kids. Despite all the complications of NF and life with six kids and yada, yada, yada - they remind me to step back, accept the situation, and find a creative way to handle it. To Thrive.

Thrive On.

(The girls have been slowly earning back their toys, as long as the room stays clean...And I have been impressed...No stumbling, fumbling, or falling has happened to me since)

Risky Business

"Too Risky" was Dr. Handlers words as he looked at Bailey's most resent MRI.  Surgery COULD happen, if we wanted all the complications and side affects...But it is NOT recommended at this time. And if it WAS done...couldn't guarantee to take away Bailey's symptoms.

I was sort of relieved....and sort of disappointed to hear this news.

Bailey suffers from Neurofibromatosis type 1....But she has an unusual case because she also has Acoustic Neuromas.  Tumors of the auditory nerve that are more common with Neurofibromatosis type 2 (a similar disorder) 

There are very few people living with NF1 that also have NF2 tumors.  I have met MANY people who claim to have BOTH NF1 and NF2, but do not actually meet the criteria for a TRUE diagnosis.

For a diagnosis of NF2, the patient MUST HAVE Bilateral Acoustic Neuromas, 

as pictured in the above still, taken from Bailey's most current MRI.  

We scan Bailey every 3 months to check on the above tumors....

And the MOST DANGEROUS tumor that is located on the Corpus Callosum: 

Bailey is taking 5-7mg of Chemotherapy and continues to THRIVE, with her positive attitude.  Her symptoms vary from day to day, but generally speaking, she is doing well!

2 wks ago, we started Lipitor, due to the side affects of chemo...making Bailey's cholesterol sky-rocket.

Thank you for all your prayers

One Day at a Time!

Thrive On!

"DOING SOMETHING Makes Me Feel Better!"

What makes somebody THRIVE?  

Websters dictionary defines the word THRIVE as:

"Something or someone who grows strongly and vigorously...Going beyond survial"

When 'Thriving with Neurofibromatosis was born almost 4 yrs ago, I had NO IDEA the impact it would make, on MY life...Not to mention, the lives of countless others, living with and dealing with NF.  I am proud to say that THRIVING has become a way of life for me and my family.

The concept of  'THRIVING' was something I could have never imagined when I was growing up.  So, the fact that my children have begun living a THRIVING LIFE has me bursting with pride.

But there are still times in my life when I just shake my head in awe.  When something happens that goes beyond reason and just shocks me with such amazement.

When I was a kid...I'd do ANYTHING to get out of going to school.  I HATED every minute I was there and went as far as to make myself pass-out in gym class, just to save myself from the tormenting I faced.

I'd play hookie, fake sick ---WHATEVER it took, to keep me away from the struggles I faced.

So...When I look at MY daughter, who is going through chemotherapy and dealing with ALL of the side affects from that.... A girl who has TWO brain tumors, and countless Neurofibromatosis complications and I see her get up every single morning and leave for school....without complaint, I can't help but just burst with pride.

Last Friday we got bad news.  One of Bailey's brain tumors is growing.  Two years ago this tumor was not there...Today, it's the size of a peanut M&M.  Over the last year, it has grown, despite being on 3 different types of chemotherapy.

The news was crushing.  (Probably more to ME than to Bailey)  But here is this 16 yr old girl who tells me..."I'd rather go to school today and DO SOMETHING, 'cuz DOING something helps me feel better!"  When I gave her every opportunity to stay home and rest.

ARE YOU KIDDING ME!?  

IS THIS MY CHILD?

Yes...In fact it IS!  THRIVING hasn't just affected ME and MY attitude....It has set an example that people want to follow!  Attitude makes a HUGE difference in how we allow things to affect us!!  I know for me and my family....THRIVING has kept my daughter ALIVE!  So why on Earth would I do anything else?

THRIVE ON!