Doctor Doctor...Give Me The News....Or Not.

I am REALLY good at talking about my kiddos and what they are experiencing, I am not so good however, in writing about my own "new news" and what's happening with me.

Since we moved to Colorado, we have been blessed to be surrounded by wonderful doctors who actually make NF their specialty.  My NF1 children are followed closely by a wonderful team of Drs at the Aurora Children's Hospital and never have trouble explaining their symptoms...They just "get it".

For me...Things have been a little different.  Since my NF1 diagnosis came so late in life, unfortunately so did any medical interventions.

Two years ago, I was diagnosed with hydrocephalus, enlarged ventricles and a brain tumor, and my follow-ups with Neurosurgeons and Neurologists have left me feeling helplessly frustrated.  "There's nothing we can do", "Neurofibromatosis doesn't cause pain", "Here's a pill"....Are all things I have heard from doctors who just didn't GET IT.

Even after we moved to this great state, where NF wasn't some strange "disease", I found myself being swallowed up by the ignorance that my first two doctors had.  The clinic I went to, told me I was just depressed and needed anti-depressants....."BUT....I came in here with a headache!!??"

I never went back to that clinic, and never filled my prescription for "anti-depressants".  I was on my own--AGAIN!  Something I have become an expert at is.....PUSHING BACK!

I am so tired of my symptoms being ignored...so tired of feeling like I am crazy.  Tired of doctors not listening to me.

I began seeing a new general doctor, who treats "normal people".  When I came to her with my NF, I was a prized patient, since she had never before seen an actual LIVING person with "Von Recklinghausen Disease"...(I politely corrected her, that it's not called that anymore)

She referred me to a Neurologist, who I just love!  This Dr. referred me to a Neurosurgeon, because of my complicated MRI and all my issues....who wasn't quite as lovable.  After 3 wks of leaving messages and having them ignored, I found my own Neurosurgeon...Who "GETS IT".  I am looking forward to having some of the 36 yrs of questions, answered...I don't expect miracles...But I do expect better than I have gotten!

I have also become a patient at the Aurora Adult NF Clinic, where I met with a team of Drs. who reviewed my medical history and have set the wheels in motion, to hopefully get some treatment.

I have become so involved with learning as much as I can about NF, so I can then teach my children AND share this information with my friends.  I am learning the NF doesn't really have a set of rules or guidelines.  Every single person with NF is affected in different ways.

I am learning that NO doctor can fit NF into a box, and tell you what to expect, because with this disorder, it's all up in the air.  I am learning that if I don't take my own health, and the health of my kids, into MY own hands, we will not get the right kind of care and treatment.

YOU...must become an expert of your OWN NF.....Not the NF of someone elses.   PUSH BACK...If you feel you are not getting what you need.  Don't be afraid to bring resources to your doctors that back up your symptoms.  FIGHT for yourself!  FIGHT for your kids!

Thrive On!

Ignorance Is Bliss?

If ignorance is bliss, why aren't there more happy people?  ~Author Unknown

"Mommy, what are those bumps on your back and tummy?"  The response to this question, that I asked my mom, when I was 8 yrs old was met with rage and anger, "That's God's curse Kristi!"

If you haven't read my book, my story is that of fear and ignorance.

Hear NOTHING about NF, because it's too scary, speak NOTHING about NF because we don't know enough, and close our eyes to the symptoms, because we don't want to see the potential problems that NF can cause.  Unfortunately, this is how many of those living or dealing with NF, chose to live their lives.

While I was paying for gas this morning, the checker noticed the back of my van, and told me that her son was diagnosed with NF when he was 6 months old.

I was thinking "AWESOME" (not because the kiddo was diagnosed, but because I found yet another person to connect with!)

I asked this woman if she was part of the CTF chapter in Denver...and she responded "NO...and I don't really want to be."   Whoa, I thought to myself.  She must've had some kind of bad experience.  "We keep our son at home, and don't need any help from anyone." she continued.  "We've seen drs, and we know what he has, and just choose to keep him away from them."

I (for the first time ever) was lost for words.   I understand how frustrated people can get with the medical community. When we don't hear the answers we want, its easy to throw our hands up and walk away.

This woman went on to tell me that her 3 yr old son has a plexiform neurofibroma that wraps around his armpit and neck.  "We had it imaged, a year ago, but there's nothing we can do about it, so we just want to have our son home."

We hear that a lot in the NF community - "There's nothing that can be done." When we hear that, we should translate that as "There's nothing we know of that can be done, but others might know more" or "There's nothing that can be done RIGHT NOW, but we need to watch this, and watch out for other symptoms of NF".


If we shut ourselves off to the medical community as a whole, essentially throw the baby out with the bathwater, believing "nothing can be done", we may as well give up totally and give in to this dreaded disorder.  There may be plenty that can be done!  Research and treatment changes everyday! I can understand feelings of helplessness.  I get total frustration, with a world that is ignorant about NF...But why, on Earth play a part in it?

I have been told a hundred times, that with my hydrocephalus and brain tumor....that "nothing can be done"....but I refuse to just roll over and take that as the final answer. 

I won't let the doctors who choose to not go the extra mile in my case, stop me from finding a doctor that will.

I will not teach my children to give up, just because someone tells them no.

It is OUR responsibility to fight for what we need and deserve. If we cover our eyes, we will fail to see all the good and all the potential those with ANY disorder have.  If we cover our mouths, we fail to speak out and share with others about NF.  And if we cover our ears, we fail to hear about new treatments, new studies, and new ways to get involved.


Thrive On!

It's The Little Things That Count

I was sitting by myself, practicing the keynote speech I am going to be giving in Toronto in a little over  a week, when this woman who was seated nearby taps me on my shoulder.

"Did I hear you say Neurofibromatosis?" She asked me.  Lost in thought and trying to focus on my upcoming presentation, I looked up at her.  She must've been in her 70's.

She asked me if I minded reading her the speech and told me that her granddaughter had been diagnosed a few months ago.

I was a little taken back, but I said "sure", and she then slid into the seat across from me.

I figure, the more practice I get, the better, so I began to read....looking up into her eye every chance I got.  She sat intensely focused on my words, which made me a little nervous.

I was thinking to myself  "Who does this?  Who comes up to a total stranger and asks to sit down with them to hear about what they are working on?"

As I got to some really heavy parts of my speech, I couldn't help but cry with this total stranger, who was now using a clothe hankerchief that had initials embroidered on it to wipe her eyes.

I finished up and she grabbed my hand and thanked me for sharing my story.  I gave her my email address and website and watched as she wrote it down....her hand was shaky, but her handwriting was beautiful.

As I watched her walk away, I felt this amazing and overwhelming feeling come over me.  I am doing exactly what God is wanting me to do.  This is an amazing feeling, and one that I hope I can live up to!

THRIVE ON!

11th Annual Women's Day

A women's group?  For those suffering from Neurofibromatosis?  I was hooked!!  I heard  about this group that was formed 11 yrs ago and was soooo excited to go!


If your NF chapter does not have a group, just for women, I definitely suggest you start one!


There were about 20 of us, who met in the living room of our gracious hostess, who has NF and also has a beautiful teenager daughter who also has NF.


Everyone in that room was affected by Neurofibromatosis in some way.  I met mothers with spontaneously affected children, a few single NF1 and NF2 ladies, a non-NF woman who adopt NF1 children, and others, like me.


One of the first thing I heard from one woman was,  "I would never allow myself to pass on such a horrible condition."  Followed by a few nodding heads.  "Uh-Oh", I thought, this is not getting off to a very good start.


I was shocked and a little embarrassed when a sweet woman walked in and recognized me.  She came right over and gave me a hug, telling how much my writing has helped her through some difficult times.  It took me a moment to place her, but then I remembered that I was a follower of her blog about her NF1 son.

I may put myself out there on the web, I may even be speaking in front of NSOF in two weeks, but I still am uncomfortable in public.  But that little embarrassment helped empower me to share my own perspective - to try to encourage these people I had just met.

That's what 'Thriving' is all about -- sharing with each other, being real and honest in front of the world, even if it makes you uncomfortable.

The group of ladies talked about  bad days, and the REALLY bad days that NF has brought them.  I talked about my bad days too...but I added how I wasn't going to let them dominate my outlook on life....Even the days we spend getting chemo treatments, or when we are given another dose of "bad news".

You don't know what you don't know - and if you've only seen the depressing negative side of NF, never realizing that fighting back is an option, its tough to imagine doing it - it wasn't easy for me.

But here I am.  I am fighting a world that is ignorant to the world of Neurofibromatosis, to not only help myself as I battle this disorder, but also to help my children and others see past this diagnosis and to get the world realize that we are just as important, and just as worthy as everyone else.

It was truly an emotionally inspiring day, as we shared our ups and downs...our struggles and triumphs....and a grew a bond that will never be broken.


THRIVE ON!

Turn it Around Tuesday

You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you
~Brian Tracy


My world ended the day I found out I had Neurofibromatosis.  The world I was used to anyway.  The truth that had been following me my whole life, in silence, was now screaming to be set free.


But I felt anything but FREE.  My diagnosis came with an enormous sense of guilt and anguish.  My reality was now something I couldn't deny....or hide from.


Nothing could have prepared me for the day someone else would recognize what the tiny bumps on my body were.  I wasn't ready for it.  I didn't want to hear it.


My whole life had been about NOT acknowledging the problems in my life...and simply blaming others (especially God) for what was happening.


Everything tied together, that day in the obstetrician's office.  I had no where to hide and no one to blame...but myself.

I spent the next few months finding excuses or ways to explain away my ignorance about NF.  I even got angry and began a blog that was all about the crap in my life and what it was doing to ME.


For me, there was no freedom in knowing or understanding that I had Neurofibromatosis.  Knowing just made me more mad!


What changed for me?  How did I make a "Turn Around"?


The change came when I began to realize the true impact I could have on the things that were happening, by simply looking at them in a different way.  Sure  those THINGS still were horrible and awful...but the way I handled those THINGS could change the way I was affected...as well as how those around me were affected.


It's not easy...This is something I have to focus on all the time.  But instead of looking at the challenges in my life, as something being done to me...I now take these challenges and wonder what I can do to them.


THRIVE ON

Are You There God? It's Me Kristi

"Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: 8 For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened."

Matthew 7:7-8

I have always prayed.  Even at 7 yrs old, I prayed that God would make ME sick, instead of my brother....and that my mommy would be happy again.  

Every night, I'd crawl into my small closet, in the bedroom that my mom and I shared.  I'd close my eyes and talk as quietly as I could to a God who my mother called a monster.

I refused to believe that God was to blame for all the problems....All the sickness that our family was enduring.  

So I prayed my prayer in desperate silence.  But things only seemed to get worse.  My brother's issues with Neurofibromatosis were progressing and my mother was spiraling into a deep depression.

Was God hearing my prayers?  Did He care at all about me?  Why wasn't He fixing my problems? This "all-powerful being" was ignoring me!  I wanted Him to take away the pain...the sickness, but He wasn't doing anything!

After my brother and I were taken away from my mother, I vowed to never talk to God again.  He was ignoring me...so I was going to ignore Him.  "Ask and you shall receive?"  Ya right!

It wasn't until I was an adult that I began to understand the way God works, but I still struggle with it.  I often pray prayers that sound more like demands, than requests.  "HEAL ME!"  "HEAL MY CHILD!"  And I find myself questioning the plans He has for my life.

Where is the trust?  The faith that I proclaim to have?  When God doesn't answer your prayers, it often means that HIS answers are not YOUR answers.  This has been a hard thing for me to accept and I find myself feeling as alone and helpless as I did when I was a child, praying in that closet.

When I pray now, even though I still want the answers that I WANT, I thank God for what I have, then leave the rest up to Him.  This is not to say that I don't send up requests....'Cause I send up many, It's just I have given up the control I THOUGHT I had to begin with.

The greatest reason that some prayers go unanswered is because many give-up praying and believing when the answer they expected never arrives, and they were so busy looking for their answer they never heard HIS answer. As long as we have the promise of God’s Word, be patient and persistent - keep believing, and don’t quit, no matter how long it takes! God has a “due season” when He will bring the answer to pass.

Rachel's Non-Sedated MRI

Rachel was so proud! No more sedated MRI's! This was a BIG day!

Turn it Around Tuesday

Do positive people bug you?  Being married to public speaking coach, I have heard it all.  I think we own every self-help, motivational book out there.  The "Rah-Rah Whoopla" that spews out of the mouths of these multi-millionaires just rubs me the wrong way.

But in the last few years...Especially in the years since my diagnosis of Neurofibromatosis, I have begun to hear what these guys have to say, in a very different way.

I grew up in a very toxic and negative environment, and learned from the best, how to always look at the dark side of things....and assume the worst.

God was a monster, who cursed our family with a dreaded and debilitating "disease" and deserved nothing but blame for inflicting us.  I was taught to hate...and brought up to hide and be ashamed of who I was.

When I would ask questions about what was happening to my older brother, Mike who is severely affected by NF, the response was anger-filled.  My mother didn't want to accept or deal with what was happening to Mike...or to herself.

For me, it felt wrong to always be angry and hateful.  I tried so hard to separate myself from the sewage I was living in.  But being a kid...It didn't work so well for me.

I was wrapped so tightly, and held my anger inside.  Not many know this, but in 8th grade (after a cruel dose of puberty) I swallowed a small handful of sleeping pills, just to make the cruelty of others end.  When I woke up the next morning, I was disappointed....and extremely tired.

I knew something had to change...I just didn't know how to change it....and I was afraid that if I tried to change, and it failed...it would be just another thing in my life that sucked.

I pretended really well...and got through the rest of my childhood relatively unscathed.  It wouldn't be until adulthood, after my diagnosis, that it would all catch up to me.

Everyone has a choice with how they live their life.  Like my brilliant 15 yr old daughter says, "bad things happen everyday, it's up to you, to pick out the good in the bad, even if you have to use tweezers".

The "Rah-Rah Whoopla" now makes more sense to me than ever.  You don't have to be famous, or a billionaire to have a positive attitude.  You don't need to write a book and have 2 thousand friends.  All you need is the will to look at things in a different way...then make the effort to change.

Thrive On!

Chemo and NF

All is well here--Considering all that's going on.  The only side affect from the Chemo seems to be exhaustion.   But Bailey is handling it like a champ!

This weekend we were playing at the park and it was like nothing was changed....Nothing was wrong.

We know however, that this is the calm before the storm.  We know that once the chemo builds up in Bailey's system, things will change.

So we focus on our good days....The days where Bailey feels like playing, instead of sleeping....and most importantly we keep up our spirits and believe that this road we are on, is a temporary one, that will lead us to a better place.

I have to say, I never imagined a life that included taking a child to chemotherapy.  I doubt that anyone could imagine it...or want to.  But it is true, that it affects everyone in the family...not just the one getting hooked up to the IV every week.

Our family has been turned upside down.  Everything now focuses around the weekly chemo treatments, and the side affects that come from that.

I find myself struggling to balance life, with 5 other children who need me just as much as Bailey does.  Some days this balance is exhausting...I don't feel like I'm doing enough.