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!

Assert Yourself!

I don't consider myself a very assertive person.  For most of my life, I have let people walk all over me.  Family members, friends, co-workers, doctors... heck, even my husband.  

It's HARD to stand up for yourself....Especially when you aren't confident with what you have to say.

I remember one doctor visit a few years ago, when I was talking about my hydrocephalus and possible shunt surgery.  I'll put it bluntly...The Dr. was a jerk.  She had wall around her a mile high and didn't seem to care one bit about my pain and suffering.

I was dismissed without any answers.  No solutions for my headaches, and surgery was simply "Too risky and not an option."  A quick "See you in a year"....and I walked out feeling WORSE than when I walked in.

So how do you get doctors to listen...REALLY listen to you?  Yes... there are rules to this, and if you follow them, I promise, you will have a great doctors visit!

First....Be specific. Instead of just complaining about your pain, describe it!  "The pain in my fingertips has been going on since 2009, and it REALLY hurts when...."  or "My headaches have been worse since 2008, and no over the counter medications seem to help."  The MORE specific you are, the better the outcome will be.

Doctors have a specific time allotted for each patient scheduled...But that does NOT mean that your time has to be cut short.  

Do NOT accept ..."See ya in a year." answers. 

Next...Keep it short. Bringing in 10 pages of your medical records is not helpful. No doctor can’t get through that in 10 minutes.  Going to the doctor, with a list of symptoms would be like taking a child to a candy store and telling them to pick their favorite candy, in 3 seconds....IMPOSSIBLE!

Try scheduling a few appointments, to talk about specific issues.  For example; I scheduled 3 appointments for myself in one month, with the same doctor.  1-to talk about tumor-related leg pain, 2- to go over the results from my thyroid ultrasound and 3- to refill important medication, and talk about side affects.

It can be overwhelming to have that many doctor visits, but trust me, you'll get a more positive and thorough result!

Know your family history, especially when it comes to genetic disorders.   Most doctors want to know  if what you are experiencing, can be tracked back to another family member.  A simple "family tree" of health related issues, can be a HUGE time saver, and I suggest you map one out, BEFORE your appointment.

Ask for what you want. “If you’re assertive and say, ‘I want to be checked for this, this, and this,’ without sounding too hypochondria-ish, doctors have an obligation to do so.  I went into the doctors stating the fact that my headaches aren't cured by simply Tylenol.  I asked for specific medication that was recommended by another doctor, and I got a prescription for it.  Know yourself...Know your needs...and present those needs confidently!  Which brings me to.....

  Don’t apologize. Think of your appointment as a business transaction!  I'm serious.  Doctors are paid to listen to everything you say.   None of this..."I'm sorry to bother you doctor" or "Do you think I should...."  That kind of talk will get you nowhere!

Understand what comes next.   Ask four questions after every appointment: What do you think of my  symptoms?  Are you ordering any lab tests? Why? And when should I expect to hear from you about the results?  Ask for any referrals or any other important information that you will need.

And last but not least...

Switch doctors (if you must). Don’t wait. Get someone new who really hears you.  It took me 33 yrs before a doctor recognized my Neurofibromatosis.  That's FAR FAR too long!  If your needs are not being met, find a doctor that will take the time to get to know you.  

I know for some, this isn't an easy process....But nothing worth having is ever "easy".  YOU are in charge of you...and no one will do it for you....

Present your new THRIVING attitude to the world, and you'll be amazed at what you get back!

Thrive On

There With Care!

Early last school year, my daughter Riley, gave a quick presentation in front of her 4th grade classroom. She told the story of our family, and how her older sister Bailey was diagnosed with a brain tumor, that required chemotherapy.  Riley also briefly explained what Neurofibromatosis was...and how the disorder affected others in her family.

A few days later, Riley's teacher caught up with me on the playground of the school.  She quietly asked me questions about NF; what it is exactly, can it be cured, what treatments are available, why chemotherapy etc.  She then asked me if I had ever heard of a company called 'There with Care'....

When she explained what this company was, and what they do for people...I honestly blew it off.  I thought..."We aren't one of those families."  The teacher gave me a pamphlet, and told me that I should really look into signing up.

Over the next few months, we got word that Bailey's tumor had DOUBLED in size, despite weekly chemotherapy treatments.  A change in chemo, and countless complications from doing that followed.

One day, I was cleaning up around the desk, and the pamphlet the teacher gave to me months before fell to the ground.  I went to my computer and typed in the website www.therewithcare.org  and began reading.  Countless stories of children and families dealing with cancers, or other life altering illnesses, filled my heart with so much sorrow.

As I continued reading, I realized that, we ARE one of those families.

Hospital stays, blood draws, port access, fevers, nausea/vomiting, hair loss, weight loss....We were dealing with something very serious, that not only affected Bailey, but the ENTIRE family as well.  So I began a letter to MaryBeth, the program coordinator.

A wonderful e-mail returned asking me for more details about our family and her offer of different things that could help our family.  Hesitant to accept, but graciously appreciative, I told MaryBeth I would call her about the offer she gave to our family.

Two days later SHE called me to check on our family.  I was emotional and stressed and she gently pressed me to tell her what was happening....I told her about our van not starting, and the mess of complications Bailey was experiencing from the chemotherapy.  She offered a quick fix for our van and told me she signed us up for a delivery of pre-made meals.

There with Care has truly been THERE with CARE.  A few days ago we saw yet another reason this company exists.   Our 2nd car, died...The fuel pump went out, and left Rich stranded a few miles away from home.  A gracious 'good samaritan' helped push the car to a parking lot and a friend drove Rich home... Then the worry about HOW we were going to get the car fixed followed.

There with Care came to the rescue.  They towed the car and delivered it to Wolf's Auto Care in Boulder. This auto place donates their time and experience to There with Care to help families who don't have many connections or options.

The car we take to and from chemotherapy was fixed within hours and given back to us.  I was so impressed with how quickly and wonderfully the issue was dealt with.

There with Care gives without asking anything in return.  They help because they see a need.  They give because they know it makes a difference.

Our family would like to show its heartfelt appreciation to this company for everything they have done!  You have helped us see that when help is needed, there are "Super Heroes" that come just in time!

This organization would not exist without donations and support from various contributors...So I would like to thank them too!  If you would like to donate in any way, please go to www.therewithcare.org 

Thrive On!