- I am a DO-ER. I have learned that ACTIONS speak louder than any words I could put down on paper. Making a list of things I want means nada to me.
- I live my life "In the moment", so my CHANGES....happen NOW.
- While GOALS are great to have....Year-Long plans of actions just don't motivate me.
- Did you know that the Journal of Clinical Psychology says that only 8% of those who make resolutions, actually stick to them...? I refuse to be in that 8% -
- LOSING WEIGHT....Is the top resolution ever. It has been on my list of things I wanted for over 30 years. And...The ONLY time I have actually accomplished this goal...Was when I decided to stop making it a YEARLY resolution!
- The pressure of making New Year's Resolutions make me feel like crap. Going into a New Year is awesome...and I have hopes and dreams of it being 'the best year ever'....But lists and plans, make me feel like I am setting myself up to fail- AGAIN. I stick with daily goals. Daily plans. Daily Intentions.
- Resolutions are typically unrealistic - I am a mom to 6 kids and live in reality. I will not make a list of unattainable expectations. "Being a size 4 by February" or "Getting to 120 pounds". Nonsense.
- In MY past...Resolutions have been about taking away something...or doing LESS of something. Negativity will NOT be a part of my life anymore-
- Instead of having a resolution to BE BETTER/DO BETTER....I celebrate that I am already there. I celebrate the progress I have made.
- Loving myself just the way I am. While having intentions on doing more things that ADD, not take away--SOLUTIONS....Not resolutions are my hopes for 2014!
Monday, December 30, 2013
I Resolute to NOT Resolute
Friday, December 13, 2013
Starlight Christmas 2013
Tuesday, December 3, 2013
Eye Issues with Neurofibromatosis
One of the most common signs of Neurofibromatosis is Lisch Nodules. These are harmless/benign "elevations" of the color parts of the eyes (the Iris) and a key diagnosis factor in people with NF. Basically, we have been told that Lisch Nodules are "birthmarks", that have no affects on vision and require no treatment.
Our NF doctors are awesome, don't get me wrong...And were telling us, that it is "highly unlikely" for a child to develop Optic Nerve tumors after the age of 8....And that MRI scans would no longer be necessary...UNLESS, something showed up in the eye exams....
Braden has had yearly eye checks, even before his NF1 diagnosis in 2007. We were doing exactly what we needed to do, and Braden, to this day, still sees 20/20.
However, during our routine - yearly eye visit 2 yrs ago, the doctor notice "inflammation" in Braden's left optic nerve....
This alerted our Neuro-Oncologist, sending Braden in for an MRI.
It had been about a year since his last MRI (which came back with results as your typical "NF Brain") Click HERE for more on "NF Brain"
I wasn't really sure what I was expecting...We were dealing with Bailey's chemo and I just assumed that the findings were going to be no-big-deal.....But, when I got a call from the doctor before we got home from our drive from the hospital...I knew SOMETHING was wrong.
"But...You told me we didn't have to worry....You told me......"
Wednesday, November 27, 2013
Sunday, November 17, 2013
I'm No Orson Welles
Radio is fun...The interview was easy...And...I met a new friend, who is oh-so-inspirational!
If you would like to hear the interview, you can click HERE
Talking about Neurofibromaosis comes easy for me....I live everyday with 'something new' popping up, and find a huge amount of joy when I can talk to somebody that has never heard of this disorder....OR....when I can help a grieving family through the process of a diagnosis.
But talking about weight....This is NEW territory for me, and I still have a hard time accepting my weight loss.
As I said in my radio interview....I have ALWAYS had to deal with my weight. Being a "chubby baby"....."sturdy" child and just plain "fat" adult, I used my weight as just another excuse to hide behind.
I wasn't diagnosed with NF until my 30's....But, I really always knew I had it...And the weight, was just something to hide it....A way to continue to 'fly under the radar'.
After that crushing day, when NF was recognized by my OB, I had to face that diagnosis head-on. Just like that day, when those nasty numbers popped up on the scale....Slapping me with the reality, that I was out-of-control, and in serious denial.
Almost 2 years later...I have lost 115 pounds (and still going) and have continued a THRIVING LIFE, by showing the world, that I am no longer hiding.
And while I am no Orson Welles, the whole process of being on the radio was AMAZING!
Thank you to Angie Austin, for the opportunity to share my story, my battle and my successes with your audience!
To Robbie- I am so glad to have met you! Congrats on your weight loss AND your book launch...I am looking forward to a long-lasting friendship!
Friday, November 8, 2013
1:15 PM- 4 hours in the MRI and 1 hour driving
I got the kids something to eat....
Bailey was supposed to fast for her blood draw- We weren't told this, but should have known, since she has had to fast for every other draw.....But, she was hungry, and I just didn't think.
We are checked in and just waiting now...
Wednesday, October 30, 2013
This is my favorite time of year! The cooler weather, the changing of the leaves, the smells....Everything about Fall makes me happy. Especially....Pumpkin Bread....which I HAVE made, but have yet to indulge in.
I remember as a little kid, how excited I would get for Halloween. My dad would get his make-up kit out and spare no expense when he would create scary costumes for my brothers. I was fascinated watching as my brothers would get bloody scars or fake nails through their heads...
For ME...Halloween isn't about the devil....or Pagan....or darkness.....It's about having ONE night, to go all out -- Dress up and have FUN! Knocking on doors, getting FREE candy and seeing my kids get soooo excited, as they dump their pillow cases of candy onto the living room floor...(So that mommy and daddy can inspect "suspicious" looking Twix bars *evil grin*
Selecting costumes at my house is a seriously crazy event, which usually starts taking place sometime in August. :) As my kids get older....The costumes get a BIT more complicated.....
This year, I am proud to present my children:
Thursday, October 17, 2013
What's Your Excuse?
Wednesday, October 9, 2013
How Dare You!
So, I get this "anonymous" comment -- Strange how all the negative comments come from "anonymous".
Makes ya wonder.
Anyways, the comment said "How dare you..." Blah blah blah "show pictures of Neurofibromatosis" blah blah blah "It's shameful that you claim to THRIVE with NF, but depict NF in such a negative way..."
Some other stuff was thrown in there too....But I didn't bother reading it.
How dare I? Really? What? Show the reality of a disorder that is EXTREMELY VARIABLE and so wide-spread, and someone out there would actually benefit from being educated on not just the MILD form of NF, but also the SEVERE forms that exist?
What good would I being doing ANYONE, if I just blew sunshine and roses out there to the world? I live with NF. I know the good, bad and the ugly of this disorder.
I WILL continue to uplift, educate and sometimes share in somebodies sorrow when it comes to Neurofibromatosis...THAT'S REALITY....THAT'S part of THRIVING with Neurofibromatosis!
(Bumps and All)
Tuesday, October 8, 2013
That's the BIG question, isn't it? WHY? Why Neurofibromatosis...or Cancer...or Muscular Dystrophy...or a zillion other things....
I was one of the thousands lucky enough to see the movie UNSTOPPABLE. I've heard about it for months...I was even part of the rise against the banning of the promotion of this movie on Facebook and Twitter.
Overall....I LOVED the movie. Kirk Cameron went against the "norm" and created a truly UNSTOPPABLE film that, I am sure will change the lives of many people who were 'on-the-fence' about their beliefs.
I've asked "WHY" many times during my life...More often since Neurofibromatosis hit our family hard with its relentless blows...There is always something to worry about...And there have been times when I feel like MY life is just a continuous science experiment, that keeps going wrong.
But...It's my belief in Jesus that tells me...when I am feeling like that....I need to draw closer to Him.
Sometimes...This is impossible.
I'd be a liar, if I told you that every time I feel a negative thought or think I am being cursed, that all I do is pray....and that it all magically goes away....
Faith doesn't work that way.
My belief -- And what I got from the movie, is that there is a reason for everything.
But- Life is always going on. Moving forward.
People also heal.
People also leave imprints of their time here, for others to see.
So -- Why do bad things happen to good people? Well...If BAD things only happen to BAD people...there wouldn't be those awesome stories of triumph and overcoming. Healing and Restoration. Faith and Inspiration.
I am HERE for a reason.
Friday, October 4, 2013
Run Run Get Around...
I love Colorado.
We had our first snow fall today and we are again at the doctors...so we got to enjoy the crazy drive.
I swear, I think people completely forget how to drive during storms.
Today's appointment is to check on Bailey's bi-pap. It's one of those appointments where I just wish we could stay home and discuss stuff over the phone.
We have had appointments every single day this week....And I'm just exhausted.
Bailey got great feedback from our sleep clinic doctor...and has tolerated the bi-pap machine wonderfully.
I'm so proud of her...She has been so good about all her appointments...she doesn't complain at all.
She is the true living-breathing example of what it means to THRIVE!
Sunday, September 22, 2013
Applying for Disability with Neurofibromatosis
Social Security Disability Help
Tuesday, September 10, 2013
Another Rare Tumor?
Monday, September 9, 2013
Thoughts From the Waiting Room
I'm here. In a waiting room. Again. Braden is totally oblivious with how angry I am right now. He is in for his first test and truly has no real clue why we are here.
I have talked to him. I have told him that the doctors have concerns...but he has this way of "checking himself out"...when things get complicated. A blessing in disguise.
I don't get REALLY angry very often.
As we checked in this morning....the lady at the front desk mentioned how sorry she was for my young sons diagnoses. (First thought....Neurofibromatosis) "What diagnosis? " I asked.
"Cancer" she replied
"Uh....he hasn't been diagnosed with cancer! " trying so hard to not just breakdown right there.
"OH.....usually these tests mean.....I'm sorry. I'm sorry!"
Braden and I walked around the corner to the next waiting area....my legs bairly keeping my body up.
Process and breath.
Tuesday, September 3, 2013
Anyone with a Neurological disorder, or any type of brain injury should have this kind of testing done, not only to provide vital information to care givers and teachers, but also to provide parents with an understanding about how their child learns, so that they can find proper resources, as the child grows.
Monday, September 2, 2013
The Elephant Man
Thursday, August 29, 2013
Did You Have Surgery...Or Something?
So, I'm outside unloading the groceries from our van....When this woman - (A neighbor, who frequents this blog, and I'm totally putting myself out there when talking about this, but I really don't care) Stops - Waves and says "Hey"....."Wow, you've lost weight....You have surgery or something?"
"No" I smiled, "Just a lot of hard work"
"No way...Come On. You're joking....You had to have had surgery or something....What kind of weight loss pills are you taking?"
"Nope no surgery" I said, "just changing what I eat, and exercising."
"Ooooookaaaaayyyyyy." She walked away, rolling her eyes. Clearly, she didn't believe me.
She probably hasn't seen me in six months, and I've changed a lot in that time, both in weight and shape, and in the last 18 months I'm down 112 lbs. Still can't believe it when I say it to myself. At this point, I'm working on exchanging fat for muscle--toning up.
As for this woman? She's the same gal who sells all these herbally - oily - "CURES" for this or that, and accused me of not caring enough about my daughter to purchase her over-priced....No-Proof-to-cure-ANYTHING crap.
Yes---She ACTUALLY said "You must not care enough about Bailey, to want to AT LEAST TRY this stuff."
Sure, she really doesn't understand Neurofibromatosis. (Heck, I've run into DOCTORS that don't really understand it, and actually had to convince them I HAD NF.) She doesn't understand that there is NO "cure". No magic potions, oils or diet will ever take this disorder away from me or my family....And I am sure she just wants to help....But to accuse me of not caring enough....That's when that conversation ended.
As she walked away, I could feel myself losing the ability to hold back the things I REALLY wanted to tell this woman - but worry not, I Thrived through it, and kept my mouth shut. Unless she happens to come read this post....Then I guess I'll have to post an update...*smile*
I turned my gritted teeth into a smile and thought to myself... "Blood - Sweat and Tears....No magic oils or pills...." And then walked inside.
Wednesday, August 21, 2013
Giving it to God
Wednesday, August 14, 2013
That's What Makes You Beautiful
So just by chance, I got to watch this video on YOU TUBE about a woman who was talking about beauty. Ha. Beauty. Something I struggle with every single day! What does SHE know, I thought.
But then I listened.
This woman who was scarred after a burn accident as a child, hit the nail on the head.
My ENTIRE life, I have been stared at, made fun of, tortured and ridiculed. All because I didn't fit in with other peoples idea of "perfect".
I was short (still am, go figure), chubby (working on that), wore glasses, had braces....And, had a disorder that while THEN it was so mild,, that doctors didn't even pick it up....But...made me different enough, that I would never EVER be considered "normal".
Mocked. Teased. Tortured.
My prayers back then were NOT for them to accept me and be my friend....They were for ME to change and be like them. Wait. WHAT? Be like them?