Care and Compassion

He wasn't my DR.  He wasn't an NF specialist.  In fact before I walked into his life, he knew NOTHING about Neurofibromatosis.
But before my appnt, the technician who did my MRI spent his lunch hour, researching a disorder that is as complicated to live with, as it is to understand.

I was impressed  with the technicians care and compassion and wished I could have every care provider be like this!
I was talked through the MRI, like I was totally new to the process.  Thank You Donald who works at The Medical Center of Aurora...for going above and beyond and showing this gal that there ARE people in this world who will take the extra time to LEARN!

Neurologist Visit

Round and Round We Go

For almost 3 weeks now I have been experiencing extreme dizziness....Dizziness to the point that I had my mother drive me to today's appointment.  That is saying A LOT!

Dr. Oh did a full Neurological exam and noted that my blood pressure was LOW- 90/56 and my heart rate was HIGH- 110 (which is weird, 'cuz I had been sitting in the waiting room for a 1/2 hour)

I haven't had an MRI in almost a year, so that was the first thing to get ordered...

The Dr. asked a bunch of questions about my dizziness, but there wasn't much to tell.  I have been dizzy 24/7, with periods where the dizziness gets REALLY bad.

Dr. Oh explained that my hydrocephalus wouldn't be getting "worse"...But the dizziness COULD be a symptom of a new tumor growing. *great*  I am familiar with the type of tumor he was talking about, since Bailey has this going on with her.

"COULD BE THIS.....COULD BE THAT"

The answers with Neurofibromatosis are never clear.  Heck, the answers with LIFE are never clear.  But what IS clear, is that I am doing something.  I am not just sitting by, allowing life to continue to swing at me.  Even if nothing can be done....and NF takes my life, I will go knowing I did everything I could and lived a life that I can be proud of. 

THRIVE ON!

Holy Dizziness Batman!

I thought it would pass...But after 2 weeks, I decided it was time to call my Neurologist.

I'm typically the one who toughs it out when it comes to things like this...Heck, when I had mono last year, my hubby practically had to nail the bedroom door shut, to keep me from trying to get up to clean or deal with the family.  

But I have learned this hard lesson...If I don't take care of myself...I could getting sicker...then what?

I made a call to my Neurologist this week, to schedule a check up...which I know will end in being given an MRI to check the status of my hydrocephalus and brain tumor.  I am half nervous and excited...to find out the cause of my daily dizziness.  More just anxious for an answer, I guess.

The hydrocephalus I have in short is-Untreatable.  The tumor is called a lipoma, which hasn't grown in 3 yrs.  So I have no idea why I have been having these dizzy spells.

So...Monday, it's off to the Neuro to hopefully get some answers!

Have a GREAT weekend everyone!

Resolutions for 2012

Last night at our church Life Group we shared our New Years Resolutions for 2012.  I found it interesting that I didn't hear the typical "I want to lose weight"...."I want to make a million dollars"...."I want a bigger house" etc.
What I heard was real people, expressing real desires to be better.  Better Christians, more productive people, healthier / happier people.

What I want for 2012 and for the rest of my life

 is to remember what's important!

My top 10 "Resolutions"

#1  Make sure Bailey gets everything she needs medically.  It's hard for me to get excited about the "No more chemo party" coming up in March.  Why?  Because Bailey still has a brain tumor that is TWICE the size it was when we began chemo.  So, stopping chemo has me feeling extremely stressed.

I want to make sure we take the right steps, in making sure she is around to see 2013!

#2  I did state that I would like to lose weight....But I vow to not focus or get so swept up in this idea, that I let the number on the scale affect my mood.  I want to be healthier....And THIS is what I will focus on!  This includes Exercise...Even when the tumor in my leg causes pain.

#3  Speaking of the tumor...I NEED to figure out what treatments are available.  Surgery?  Amputation?  Whatever needs to happen...NEEDS to happen in 2012!

#4  Be a more patient person.  Anyone who KNOWS me, knows that I have issues with this.  This includes friends and family.  If something doesn't happen on MY time schedule, I will try to let it go. :)

#5   Invite friends over to our home.... I would LOVE to host Life Group, or just a social gathering.  Goal for 2012, is to invite a few families over for dinner/games/movies--whatever. :)

#6  FILL my calendar with speaking events, interviews, or talk shows covering Neurofibromatosis.  I already have a few set up for this year, but I want MORE!!  Getting myself  "out there" as a spokesperson for NF would be a dream come true!

#7  Blog more.  I started this blog over 3 yrs ago and it began VERY strong.  I'd like to get back to that.  This includes Guest Bloggers, Interviews, Personal stories, and general everyday life.

#8  De-Clutter my house!  I swear, I am cleaning up the same messes every single day...We have WAYYY too much stuff.  Maybe have a Yard Sale!

#9  Support my husband.  I do this already, but I could be better.  Have faith in him and trust him more...He and I have been through so much in our marriage...And I need to believe that God will see us through.  He is my best friend and I need to block out all the negative people who try to convince me that holding onto him isn't what I should be doing.  

#10  Last but not least...In 2012, I'd like to get out a second book.  I've been thinking a lot about a squeal or just a book about general Thriving.  My life isn't all about Neurofibromatosis...It's about Thriving, no matter what I am facing...

I would LOVE to hear some of YOUR "resolutions" or goals for 2012!!  Reply here

I Can See Clearly Now...

I remember it like it was yesterday.  I held off telling my parents as long as possible... that I could no longer see the classroom chalk board.

As if 8th grade wasn't hard enough...Now I needed glasses!

I did every possible trick I could to avoid this day; squinting, pulling my eye lids back...But it was unavoidable. I went to the eye doctor and they confirmed that I definitely needed glasses, and were shocked that I had gotten along this well without them.

The moment I put the glasses on, my world changed.  Both for the good and the bad.  I had the weekend to get used to my "new look" and I was determined to make this be a positive change for me...

That Monday, I lasted 2 hours at school.  The glasses that were going to change my life forever, went into my pocket and I left the school in tears.  

It wasn't the mean comments, or even the boy who tripped me, making my glasses fly across the cafeteria that made me so mad.  It was the fact that no matter what I did, no matter how hard I tried, I was ALWAYS going to be different.  I was ALWAYS going to have to deal with people who just couldn't accept me... 

The 13 year old me wanted to disappear forever.  But I knew I couldn't.  The next day at school I was determined to not let the bullies affect me. (as much) :)  I proudly put on my glasses and walked to school...I was amazed that I could see all the details of the trees...I could see the faces of the drivers in their cars as they passed me...And I was excited to be able to copy my work of the chalk board in math class.

As hard as it was to accept that I would always be weird, chubby, bumpy and just different I knew it was my reality....I knew (even back then) that my life would be one where I had to fight for my happiness.  

We all have bullies in our life. Sometimes they're people. Sometimes they're disorders and diseases that won't go away. Sometimes they're emotions, from anger to fear to embarrassment to depression. The bullies will always be there. The question is, are you willing to stand up and fight? Let your voice be heard? Let those bullies know you aren't going to just run away, or worse, just stand there and take it?

Thrive On!

Tumor Talk

Tumor patients regain consciousness after surgery

TUOI TRE 

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Updated : Tue, January 10, 2012,3:07 PM (GMT+0700)

Thach Thi Sa Ly pictured before surgery.

Photo: Tuoitrenews

Two Vietnamese women, who were recently operated on by American surgeon McKay McKinnon to remove their tumors, have regained their consciousness, Dr. Tran Quyet Tien, deputy director of Ho Chi Minh City-based Cho Ray Hospital, announced Monday.

Both patients, who have been diagnosed withneurofibromatosis (human genetic disorder), are now able to open their eyes and move their arms, hands, legs, and other parts of their body, the doctor said.

Kieu Thi My Dung, who carried a 1.5 kg tumor on her face for years, is making a good recovery and can now breathe and drink milk by herself.

After removing Dung’s tumor on January 6, the 20-member surgical team led by Dr. McKinnon then used a part of the patient’s skull bone to recreate her right eye socket which was seriously damaged by the tumor. The team also repositioned her right cheekbone into a more symmetrical position with her left one and recreated the ciliary muscle of her right eye.

Her right ear would be also recreated, the doctor said.

Meanwhile, according to Dr. Le Hanh, head of Cho Ray’s Plastic Surgery Department, 36-year-old Thach Thi Sa Ly, who had plenty of bubble-like lumps covering her body from toe to face, is expected a slow recovery since fluid still leaks from her incisions and could undergo more surgeries to remove the remaining tumors in the future.

Dr. Hanh said Ly’s incisions do not show any symptoms of infection; however, she has to receive milk through a gastric fistula.

Dr. McKinnon, with assistance from a team of doctors and nurses of Cho Ray Hospital, on January 7 removed a total of 10 kilos of lumps mostly from her forehead, chin, hands, buttocks and around her eyes.

Ly’s surgery is the third consecutive operation that Dr. McKinnon performed in Vietnam.

On January 5 at HCMC-based hospital, a 60-member surgical team led by Dr. McKinnon successfully removed 82-kilo tumor on the right leg of 32-year-old Nguyen Duy Hai, who hails from Da Lat central highlands city.

Hai is recovering well and now can eat and breathe by himself.

Dr. McKay McKinnon and his wife left Vietnam for the US on January 8.

Braces!

With Riley's permission....

 She has braces!  

It was cute to see how excited she was for the day to come!  

We have a LONG way to go...Including oral surgery to remove two impacted adult molars....But she is in good spirits!

"A dream come true", Riley says

She's Hideous!

As I dropped kids off at school today, I couldn't help but overhear this mother commenting about her daughters birthmark.  "It's soo ugly...it's hideous!" the mother said, as she pointed at the quarter-sized brown, slightly raised mark on her little girls cheek. "Just look at it...I'm sooo glad we are getting it removed!"

I just stood there.  Biting my lip.  Maybe I should have said something.  I doubt it would do any good though.

My mind just went to my family and the countless birthmarks we face.  The tumors.  I have never once considered them "ugly" or "Hideous"...And would NEVER point them out, and shame my child, like this woman did.

To me, despite the tumors, the birthmarks, I am a work of God.  I am not a mistake...nor are my children.

I was thinking, as I was listening to this woman go on and on about how her daughter would "Never be taken seriously", with this mark on her face... How she would handle a diagnosis of Neurofibromatosis.

When I came home and told my hubby about this, his reply was awesomely true.  "You handle, what you are given".  To that mother, her child's birthmark was ugly. (Even though I disagree totally with how she handle it...it was HER truth)

I live in MY truth, that MY children are beautiful.  Birth Marks, Tumors, Deafness, Scoliosis...whatever NF brings.  My job isn't to change people, and how they look at themselves....My job is to set an example, with MY TRUTH and hope that it helps people use what they already have, to change themselves.

Thrive On!

Brain Tumors and Neurofibromatosis

We have two little friends, that came into our lives in 2010.  We never could have imagined how close we would become.  In 2012...We plan on saying goodbye to these friends!