Porter Colley-Neurofibromatosis

I love it, when I find people THRIVING!  Porter's attitude is beautiful!

Porter Colley ~ Ripley's Believe It or Not! by THEKNOTTYMAN

Contentment

"I have learned to be content

in whatever circumstances I am." Philippians 4:11

(Paul wrote this from a prison cell!)

. 

For me, contentment means a feeling of peace and comfort.  How on Earth would it be possible for one to feel contentment in a prison cell?  How could someone feel peace and joy, in a seemingly hopeless situation?

I personally struggle with the feeling of contentment.  I doubt is because of the lack of faith or trust...but it's definitely because of the lack of something.

The craziness of raising a large family, can make it hard to find to find contentment, but it CAN be done.  I have seen it...felt it...I just need to figure out how to access it more often.

The one thing I have found, is that the busier I am...the more content I feel.  It's those moments of quiet alone time, that seem to trigger frustration and depression.  If I keep myself busy...Even if it's with hospitals, volunteer time, yard work, or computer stuff, I find myself less likely to fall into the trap of discontentment.

The bills, chemo treatments, car repairs, lack of money etc...Are all real issues, that can't be ignored, but they are also things that I really have little or no control over.  What I do have control over, is how much I let  the outside "stuff" get to me.

My faith in the Lord is strong.  Stronger than it has ever been....and it is THIS, that I need to focus on....and it is THIS, that will bring contentment.

Pregnancy and Neurofibromatosis

*If there is a history of a genetic disorder in you or your extended family, it's best to ask for genetic counselling before becoming pregnant. The number of tests available for genetic disorders is increasing every year, although they don't tell the potential severity of the condition.


I was 7 years old when I KNEW I wanted to become a mother.  Carol Brady was my idol, and I wanted to be just like her.

Neurofibromatosis never entered my mind, when it came to wanting children.  In fact, as far as I knew, I had nothing to worry about with regards to NF.  I was examined as a child, after my older brother Mike was diagnosed with NF, and my parents were told I didn't have it...so why would I worry?

I was confused when I began to have some NF symptoms, but was continually dismissed by doctors, whenever I would bring them up.  I was simply "birthmarky and freckly", and didn't need to worry.

My first baby was born in 1996 and I couldn't have been more happy. The few "bumps" I had seemed to grow a little ... and a few more seemed to pop up.  But they didn't hurt or cause me any issues, so I didn't worry...And when my 2nd child was born in 1997, I knew that being a mother was exactly what I was meant to be.

None of my obstetricians mentioned the bumps (that were very obvious)....Until my 6th pregnancy.

As I wrote in my book, Thriving with Neurofibromatosis , this was my wake up call...when I finally "got  NF"...The moment I realized I had been overlooked and seemingly ignored by the medical community, and personally ashamed and hiding in fear from my own concerns and doubts for FAR too long.

That 6th pregnancy - when an obstetrician indirectly, but effectively, shamed me for bringing children into the world. I knew then and there I had a battle on my hands.  I knew that I would have some explaining to do, to those in my life, around my life, and even to myself to a degree, to create an understanding as to why on earth I would risk damning my children with such a dreaded "disease".

It wasn't long after Brooklyn's birth that I began to understand and accept ALL that Neurofibromatosis meant for me, and for my family (which was A LOT).  My own NF symptoms had gotten worse, and I was scurrying around Eastern Washington, trying to find a doctor who had actually even  heard of this disorder.

3 of my 6 children would also get the NF diagnosis...And with that brought tremendous guilt.  And this guilt was almost paralyzing...Almost.

I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor--(which, from what the drs told me, have been there my entire life) while at the same time, vision issues and tumors began appearing in my children. It was all consuming, and could have easily overwhelmed me.  But my choice to have children brought with it the responsibility to accept these outcomes.

This blog, was born 3 yrs ago...After my decision to be proud of the choices I had made.  Everything you do in life is a choice...and you can also choose to be proud (or not) of those choices.

NF could have happened to any of my children, even if I didn't have it.  Or Downs Syndrome, or Muscular Dystrophy or a hundred other disorders lurking within the genetic code of the human race.

As each of my children have grown, I have also grown.  I am confident that my choice to have children was the right one.  I would not wish Neurofibromatosis on anyone...But my children have given so much good to this world, and I can't imagine my life without them.

This isn't a post trying to justify my decision to have children, it's simply my story about my choice to do so.  I respect those who choose not to have children. If I had known more when I was 19, maybe I would have made different choices. Maybe there is a reason I didn't know more, and maybe those reasons are named Bailey, Braden, Riley, Rachel, Riker, and Brooklyn.

 

Life in itself is a risk. My job now, is to provide MY children something I didn't have; A full understanding of what NF means for them....and what it COULD mean for them, if they go on to choose to have a family. Education - the E in "The E.A.S.Y. Way to Thrive" is my goal for my children, for myself, and for the world. Not so we can always make the 'right' choice, but so we can make the 'right choice for us'. 

Thrive on! 

The Flu Shot....Not For Me!

So Friday, while Bailey was at chemo....I was asked if I had gotten Bailey her flu shot.  I saw her flinch at merely the topic of more needles. (poor girl)

We were told how important the flu shot was, to protect Bailey.  "Her immune system is not like everyone else's....and it's vital everyone get one." the nurses in the room told us.

So...I agreed.  Both Bailey and I rolled up our sleeves and got the injection.  I'm not a wimp with needles, but dang it....This one hurt!

I felt fine the rest of the day....but on Saturday.....AND every single day since...I have been sick!  Body aches, head aches, tummy aches...

I get NO sympathy from my hubby, who says..."I told ya so..."  But he has taken up the slack for me, and I appreciate that!  (XOX Honey)

I vow, to never get the flu shot again.  I vow to not let doctors talk me into something, that I am not comfortable doing.

Bailey has been fine, after the shot...I'm so happy about that!  But as for me....I will NEVER get the shot again!

Pictures of Neurofibromatosis

I wanted to thank all my wonderful NF friends for contributing pictures to this slide show.  I hope this brings awareness to a condition that is WAY under talked about!

To parents of newly diagnosed children, the pictures in this video show people mildly affected (which is typical) and people with more severe issues.  No one can predict how severe or mild your case will be.  The best treatment for Neurofibromatosis is to find good doctors, who understand Neurofibromatosis and who also listen to your concerns.

Surround yourself with people who will support and accept you...

And NEVER let Neurofibromatosis be something that defines you. 

Oprah and Neurofibromatosis

It's been a LONG time coming, but I wanted to go ahead and address the whole Oprah uproar that was caused by Oprah referring to Neurofibromatosis as the Elephant Man Disease.  Let me emphasize REFERRED TO NF as the Elephant Man Disease.

Last year, when I wrote about the misinformation and lack of complete information regarding Neurofibromatosis on the Oprah Show, I... like a lot of you was upset that FINALLY NF was being featured on a top rated talk show and it failed miserable to get the job done in a way that educated and informed. Read blog post here

It was a "freak show".  I am in no way calling Ana Rodarte a freak...the opposite in fact.  Ana bravely went on the Oprah show to help spread awareness about her disorder.  She showed the world that she was not afraid of the snickers and stares...This woman is Thriving with Neurofibromatosis!

Oprah does A LOT of good...Don't get me wrong.  But, she had the opportunity to not just talk about Ana's disfigurement....(because as we all know, NF affects everyone differently and Ana's case is actually a rare.)  Oprah had a HUGE chance to accurately and respectively educate the world about a disorder (not an illness or disease)  The entire segment took less time, than it does for me to take a shower. (a quick shower)

The reason I am bringing up Oprah again is because she starts her new show on OWN this week, and I wanted to put myself out there, to maybe catch her attention.  I signed up for her "Life Class", in hopes of adopting some her her life lessons.

When I watch Oprah, I am in Awe.  Your ideal "rags-to-riches" fairy tale.  She just amazes me with how she overcame a very abusive past, and went on to be one of the most talked about people in the world.

"Doing the best at this moment puts you in the best place for the next moment."-Oprah 

She has so much good to say, and when she says it, it's in such a way, that inspires so many people.  She could do Neurofibromatosis so much good, if she was willing to devote an entire show to disorders that need to be talked about.  There are MANY disorders out there, not just NF that are serious and potentially deadly, but don't get the airtime, like breast cancer, muscular dystrophy, diabetes etc.

I can't even type in Neurofibromatosis in my blog without the spell checker highlighting it for possible misspelling.  NF needs to be talked about.  Not in a way that "shows off" our tumors, or disfigurements...But in a way that informs and helps people to understand the disorder.

I have e-mailed countless TV shows, Talk Shows, Radio Programs, and have yet to find anyone interested enough. (besides a few small town productions) 

Dear Oprah,

I am excited to be a part of your new journey, and the Life Class program!  I am a woman, living (and thriving) with a condition called Neurofibromatosis.  It's the same condition that Ana Rodarte has, the young woman, that you featured on your show back in 2010.

While I was excited and happy that FINALLY, NF was going to be featured on your show, I was also let down, by the lack of information included in your NF segment.

I know shows have to be cut and edited, but this was a serious misrepresentation about the disorder that affects more than 1 in every 2500 births each year.

You talk so much about living your best life.  Fulfilling your potential and dreaming your dreams.  Oprah...MY dream is to accurately, respectfully and completely, represent my family and friends, who suffer with this debilitating disorder.

Your new show is the perfect platform to do so.

"Do the one thing you think you cannot do. Fail at it. Try again. Do better the second time. The only people who never tumble are those who never mount the high wire. This is your moment. Own it. "
Oprah Winfrey 

This is one of my favorite quotes from you.  I am mounting my wires high, and expecting to succeed!  I OWN every moment I live....and I am ready to talk about NF, anytime you are.

Kristi

Boob Awareness and Neurofibromatosis

"Save the Tata's",   "I *heart* boobies",  "Think Pink",  "Put the squeeze on Breast Cancer"

It's hard to miss.  Pink is EVERYWHERE!  Even the Diet Pepsi can I am drinking from right now is pink.  But if you haven't heard, October is breast cancer awareness month and it's in FULL swing!

Celebrating 25 years, The National Breast Cancer Awareness Association has been promoting awareness to help women all over the world to become experts with their own bodies.  The Awareness doesn't just stop there, however...It involves everyone around the woman as well.

But what if you have a condition like Neurofibromatosis; a genetic condition that causes benign tumors or neurofibromas to grow along nerves in the body or on or under the skin?

I have Neurofibromatosis.  I also have many tumors that are scattered all over my body...Including my breasts.  The topic of breast cancer scares me, since people with 'NF' are more prone to various types of cancer.

When doing a self breast exam, it's hard for me to distinguish if what I am feeling is "normal"....Because normal for a woman with Neurofibromatosis, means something completely different for a woman without NF.

The first step in doing an exam is to get to know your boobs.  Seriously.  Touch em, squeeze em, tug on em....Trust me, they won't fall off!  

Normal boobs are lumpy, so get to know your "lumps".

Test 1

Using a mirror, inspect your boobs with your arms at your sides, with your hands on your hips, and with your arms raised while flexing your chest muscles.  Men do this too, and sure it may look or seem silly, but it can save your life, so do it!

Test 2

Look for any changes in contour, swelling, dimpling of skin, or appearance of the nipple. It is normal if your right and left breasts do not match.  I have names for my boobs, but that's another blog post entirely.

Test 3

Using the pads of your fingers, press firmly on your boob, checking the entire boob and armpit area. Move around your boob in a circular pattern. Remember to use the same method every month. Check both boobs. If you have any growths or painful lumps, make an appnt with your Dr. ASAP!  

Test 4

Gently squeeze the nipple of each boob and report any discharge to your doctor immediately.  Ladies, if you are breastfeeding, this of course does not apply to you.

Test 5

Examine both breasts lying down.  

(I have to do this with the doors locked, cuz some people in my house may take this as an open invitation)

Women with Neurofibromatosis have a harder time with breast exams, because new neurofibromas are constantly appearing, but if you get comfy with touching your boobs, and being aware of any sudden or painful changes, you can have a successful breast exam too.

Is It Breast Cancer? Warning Signs You Shouldn't Ignore

Breast cancer has some obvious and not-so-obvious symptoms that you shouldn't ignore. Pay attention to your breast health so that you can identify changes early on. Schedule an appointment with your doctor right away if you experience any of the following symptoms in one or both breasts:

• A new firm lump or mass in your breast
• Your nipple suddenly becomes inverted (goes in) or dimpled
• Discharge from your breast other than milk that comes out on its own
• You're being treated for an infection of the breast and it doesn't get any better or any worse after a week or two
  
  
  I have wanted to talk about this topic for a LONG time, but wasn't sure how to approach it.  And all joking aside, it is estimated that approximately 40,000 women (just in the USA) will die from breast cancer!  So while you may think it's silly or uncomfortable to touch yourself, it could very likely save your life!
  
  
  Being comfortable with my own body, is VITAL, if I am to THRIVE.  Thriving doesn't just stop at Neurofibromatosis....I plan to THRIVE in every single area of my life!
  
  
  If you haven't touched your boobs this month....do it RIGHT NOW!
  
  
  Thrive On!

Friends of Jaclyn and the Denver Lacrosse Women's Team!

Today was AWESOME!  Thanks to Friends of Jaclyn (an awesome charity that matches children with pediatric brain tumors with high school or college sport teams) AND the Denver University Women's Lacrosse Team, we had a day that couldn't have been more perfect!

After a LONG drive (thanks to those CRAZY Colorado drivers and an accident on I-25) We finally got to the Denver University campus to meet the team that FOJ matched us up with.  Thank Goodness, a few of the team members were waiting for us, to guide us to where we needed to be!

We headed up to the "tower" where the rest of the team was waiting, as well as a spread of yummy breakfast food!  This is where the girls introduced themselves and got to know Bailey a little.

-Riker and his plate of bacon-

-the girls-

Then the team took us on a tour of the athletics department!  It was so nice!  We got to visit the ice rink, soccer field, pool and gym.  The girls were sooo nice and took a photo with Bailey!  She truly felt like a member of the team!

My kiddos were given Lacrosse gear, and got to play on the field!

We got to "hang out" with the team before the game....We played Wii, and the team gave Bailey a bunch of fun Lacrosse stuff!  It was so much fun hanging with the team...And Bailey said afterwards, how neat it was to be a true part of this team.

They even gave Bailey her very own locker!  

It was lovingly decorated and filled with t-shirts for the entire family!  

Yup...Even my boys had fun!  They met up with the boys Lacrosse team, and were given some "guy stuff"!

Riker says, he is going as a "ZOMBIE Lacrosse Player" for Halloween.

-Playing a little soccer in the locker room-

-Woohoo-

-Go Denver!-

Our family would like to THANK the Denver Women's Lacrosse Team and Friends of Jaclyn for this wonderful opportunity!  We had the best time, and made memories that will last forever!  You made Bailey feel so special and I know that she has made friends for life!

Your kindness was felt throughout my family and we appreciate the time, love and effort you all spent in making today such a special day for Bailey!

We can't wait till the next game!