A Day in the Life of Neurofibromatosis

Yesterdays appointment almost - literally drained the life out of me.  While I feel extremely blessed to be surrounded by a team of doctors who know about Neurofibromatosis...I am - at the same time, surrounded by those same doctors, who fail to truly TRULY understand it.

JUST HELP MY DAUGHTER!

Is that too much to ask?  Come up with SOME solution....Make it so I'm not walking out of EACH and EVERY appointment more frustrated, than when I walked in.  I am sure that these doctors get as frustrated as I do, but how do I explain to my kid, that nothing can be done to help her?

We spent EIGHT hours at the hospital yesterday.  Bailey was poked and prodded.  Xrays, blood draws, orders for MORE medication....MORE physical therapy--A change in this ....A change in that.  But no solutions....No "fix".  ANOTHER band aide.

Bailey's Kyphosis is....In the Drs. words "pretty severe". That is, for a 17 year old girl.

In almost EVERY article I found about Kyphosis, it was about the elderly.  Even of our doctors, claimed this to be predominantly an "old person's" condition.   In his words..."Her X-rays look like that of a 70-80 year old."

Bailey's "hunch-back", hasn't really bothered her.  She's a pretty laid back kind of kid.  She has dealt with the massive - overwhelming amount of doctors and appointments wonderfully.  She says she no longer feels the "pokes" during blood draws, and pretty much tunes most of the medical drama out.  

For the most part, this has been good for her....But, soon she will be 18....I am trying to teach her to take some control over her own health care...And she doesn't want any part of it. "It's too much mommy." she tells me.

I hear ya sweetheart.  It IS too much.  Too much for ANY person to have to deal with.   

We were seen yesterday by a team of doctors, very interested in Bailey.  This excited, and overwhelmed me.  

With Bailey's Neurofibromatosis type one....she also has Acoustic Neuromas (A Neurofibromatosis type 2 type tumor)  Having both NF1 and NF2 has been called "Incompatible with Life", by some doctors.  "A one in a billion chance".  Lucky Us, eh?

While this "issue" fascinates our team of doctors, all they seem interested in, is studying Bailey.  I know that's not TRUE....They Do care....But it sometimes feels that way. 

No fix.  No cure.  No answers of WHY!

Bailey's scoliosis, is common for someone with NF, and isn't that bad.  But the scoliosis, along with Kyphosis, has made Bailey....What was it the Physical Therapist said...?  Oh yeah..."A FUN PATIENT."

Fun?  Not for Bailey.  She lives with constant, and I mean CONSTANT back pain.  She's been on several different pain medications, all of which knock her out, or make her sick.  Our most recent prescription for pain medication was TOPOMAX, which I personally took for almost a year, and re-named the stuff "DOPOMAX", because it caused me to literally act like a zombie.  (Now...I like zombies, but not enough to become one...Or have my kid become one)

When we met with Bailey's primary doctor, he quickly took Topomax OFF Bailey's list of new prescriptions.  This medication may work for some....But according to THIS Dr., it was not a good fit, as Bailey is already taking a number of other things, and didn't want to take the risk of complicated interactions.

In general, we have doctors who listen AND hear us....And this is a good thing.  We didn't necessarily leave the appointment with bad news, or a drain of hope.  We left knowing that the doctors are TRYING to help.  Without some magic wand ... NF is going to have its ups and downs.

If we have to do more tests, more therapy, more MRI's....Than so be it.   Advances are being made all the time...And who knows....Maybe one day....All the tests, scans and blood Bailey has been a part of, will one day be a part of some kind of treatment for NF? 

THRIVE ON!

MRI News

Braden has Neurofibromatosis type 1.  His first MRI scan was in 2009 and the findings of that, were very typical of someone with NF: bright spots (UBO's), abnormal ventricles and "areas to watch")

We really didn't concern ourselves too much and did as we were told..."Watch and Wait and scan in a year."

So in December 2010, we went in for our "yearly MRI" and when the phone rang, before we even got home from the MRI, I knew something was wrong.

The MRI tech was confused when he compared the last scan to the one just taken...and asked me to come back in to re-scan him.

We had JUST gotten home, from a LONG....Sedated MRI, I was not about to turn around and bring my son in, to be re-sedated, and re-scanned.

Turned out, that Braden had a brand new Optic Glioma, on his left optic nerve, and several pelixform neurofibromas growing throughout his spinal cord.

It is VERY unusual for someone with Neurofibromatosis, to have new findings of an Optic Nerve Tumor, after they turn 8 years old....In fact, MOST doctors won't even scan an NF1 child, if they have had a previous "normal" scan, and have no obvious signs of issues.

But there it was.

A race to the Neuro-Ophthalmologist, for a complete vision screening was scheduled, as well as a meeting with the NeuroOncology team at the Children's Hospital.

After the vision screening came out "normal"...The meeting with the doctors, went as I expected..."Let's keep an eye on things...and scan Braden in 6 months."

So, we did as we were told...And Tuesday Braden had his 6 month follow-up MRI

Braden spent 3 1/2 hours in the tube as his brain and spinal cord were scanned.  The results showed growth of both the Optic Glioma and plexiforms...But as most of you with Neurofibromatosis knows....This does not necessarily mean anything.

As the doctors examined Braden and xrays were taken, it was also noted that Braden's scoliosis has gotten worse.

Physical therapy will be started in October, to help with strength and flexibly.

It's easy to become overwhelmed with all that is happening with our family, and this is why I stay very 'in the moment'.  I enjoy the small things in life, and try (sometimes fail) at letting go of the things that the things I cannot control.

I'm in Control-Right?

One of the most powerful things most people want in their lives, is control.  When we don't have the control, I know for me, the tension and anxiety that comes from that is extreme. Just ask Rich - I can be a terrible backseat driver :)

Who controls NF? 

The doctors? The Pharmacists? The Insurance Companies? They all have some control in how we deal with it, but in the end, NF controls itself. The real question is, does NF control YOU? 

I know all too well how devastating living with a progressive, potentially terminal disorder is on a person, and a family. How frustrating it can be to hear that nothing can be done or that I have to simply endure my pain.  There is nothing more frustrating than the feeling of helplessness.

 

Not being able to control how bad my NF will get is something I think about every single day.  I often wonder if the tumors will get so bad, that my husband will fall out of love with me....Will my looks determine who stays and who goes?


Medically, NF has taken over - it's all over my Facebook page and the hundreds of e-mails I receive from people desperate to get back some of the control that they have lost.


It's easy to get lost in NF. To lift our hands off the steering wheel of our lives in despair, and let it drive us wherever IT wants to go. But that moment of 'easy' turns into a lifetime of hard feelings, disappointment and depression. 


Having Neurofibromatosis teaches me almost daily that the only true control I have is how I manage and deal with the things that happen in my life, from tumor pain to taking my daughter to chemo to facing myself in the mirror every mornng. 

 

Keep your hands on the wheel. Hold on tight. The road ahead is full of curves, construction, speedbumps, potholes, falling rocks, animal crossings, and traffic cops. Sounds terrifying, but it's better than letting NF drive you - because it will drive you straight off a cliff.  

E.A.S.Y. Way to Thrive (part 4)

E.A.S.Y.

(Y)

YIELD

Last but not least Y....For YIELD.  Yielding with NF has nothing to do with traffic rules.  Yielding DOES NOT mean, allowing others to pass you by....But I am talking about yielding  to your STRENGTH!

Yield to the reality that YOU ARE BEAUTIFUL

Regardless of cafe au laits, bumps, plexiforms--Whether they are hidden under your clothes, or displayed to the world in all their glory.  

YIELD to the possibility that you can be whoever you want to be!  Your children can be whoever they want to be, regardless of Neurofibromatosis!

I know I come off real motivational, and I know that it annoys A LOT of people, but know this...I would much rather be annoyingly motivational and positive, than to live my life angry, depressed and afraid.

My hubby is a motivational speaker....and I have spent YEARS blocking out his positive attitude platitudes.  I focused on everything that was wrong in my life.  I felt that since there was nothing I could do to stop NF from happening...why bother trying to be happy it?

It wasn't until I YIELDED to the fact that not only was I hurting myself by building a wall around my NF with my own fear and ignorance, I was hurting my children along the way.  I DESERVE BETTER!  THEY DESERVE BETTER!  YOU DESERVE BETTER!

Thriving with NF isn't always E.A.S.Y. but once you take new actions...positive actions, you will be amazed at how your attitude will transform!

Educate yourself

Take Action and watch your Attitude change

Share positively and lovingly with others

Yield to your new found THRIVING life...believing you are good enough to have it!

And most importantly...

THRIVE ON!

The E.A.S.Y. way to THRIVE (part 3)

E.A.S.Y.

(S)

SHARING

Education and Attitude are great...but what are they, unless you share your knowledge and attitude with the world?  At least share with your friends and family!

When faced with ignorance, or judgement, do not turn away.  Share.  Share who you are and what you live with everyday.  Share lovingly, with a child that points in your direction.  Share respectfully with doctors, who need to understand more about you and your life.  Share openly with each other, so we know we are not alone.

We all know 1 in 3000 births are affected by Neurofibromatosis, and yet NF is barely recognized by the general public or the mainstream media. How many of you watched Oprah Winfrey call NF the Elephant Man’s disease? You might not like this - but its not just Oprah’s fault she doesn’t understand NF - its OURS. If we want the world to recognize us, raise money to fund research to help us, to understand and accept us - we have to SHARE ourselves with them.

Once we educate ourselves on NF we can take the Action necessary to educate others. To help our families understand us more. To open the eyes of doctors who don’t specialize in NF to treat our symptoms seriously, and get us the treatment we need - even if they didn’t know treatment existed before we walked into their office. 

How many of you would consider sharing with the media? Writing to your local paper or TV station to offer them information about NF? Not everyone wants to take it that far - but would you be willing to start with your friends, your co-workers? Maybe your church? At the very least, start with each other. 

After all, MY NF is different than YOUR NF. Building a network of NF friends who understand what we are going through can be our most valuable defense against the temptation to isolate ourselves, and the rampant depression seen in the NF community. 

When we open up to sharing ourselves at any level, we gain strength, we spread awareness, and we let the world know we aren’t going to be pushed in the corner any longer....and most of all we THRIVE!

Who are YOU going to share yourself with today?

Thrive On!

E.A.S.Y. Way to Thrive (part 2)

E.A.S.Y.

(A)

ATTITUDE/ACTION

Yesterday, I talked about Education being the first part in changing how you look at your struggles.  Understanding and learning about what you are dealing with, helps so much in giving YOU the control and not allowing your condition to control you.

While education is important, it is nothing, without a positive attitude.  What good would knowing all about your condition do, if you have a really bad attitude about it?  How would negativity help in making you feel better?  

I grew up in a very toxic environment, where Neurofibromatosis was an awful swear word, that was never to be brought up.  My mother still carries with her, a tremendous guilt for 'giving' her children this horrible, unpredictable "curse".

I watched my mom, and how she treated her own NF and how her fear and negativity was spread around, affecting everyone in her path.  It was no secret that my mother was scared to death of NF.  She allowed that fear to control her, blinding her from the fact, that she actually had TWO children affected with NF.

For years, I wondered, what was wrong with me.  Why were my symptoms being ignored?  Why was I showing the same signs my brothers was, and no one was doing anything about it?

Attitude.  A fearful attitude will keep you from Thriving, plain and simple.  A depressed outlook, will limit the possibilities that are within reach for you.

YOUR attitude and YOUR actions are the only part of your life with Neurofibromatosis that you can control.  I know that we are brought up in a world who encourages us to blame how WE feel on anything we can find.....Blame God.  Blame the Doctors.  Blame our parents....

But when it comes down to how we REALLY feel....It's not the people around that we can truly blame.  It's the person that reside in our hearts...and the actions WE CHOOSE, or CHOOSE NOT to take.

I didn't start out 'Thriving with Neurofibromatosis'.  I made a choice, to not live in the negativity anymore.  I made the choice to break the cycle and DO SOMETHING, instead of sitting hopelessly by waiting for NF to do something to ME.

I don't sit behind a curtain of shame and fear.  I put myself in front of the world.  I share my struggles, my triumphs.  My good days, my bad days....In hopes of making a difference.  These ACTIONS changed my ATTITUDE.

When I find my attitude suffering the most, is when I choose to sit and do nothing.  Thriving or not....I still find myself there.  I just choose to not stay there.  It's when you choose to get up from that spot, and move on to the next moment in your lives, when you choose to take ACTION... you truly THRIVE.

THRIVE ON!

E.A.S.Y. Way to Thrive

E.A.S.Y.
(E)
EDUCATION

It's not always easy getting up to face a new day.  Hearing "new" news of something else NF has done to our family seems to happen every other day.  But I have found that if I focus my time on everything that NF is doing to me and my kids, I have a hard time finding ways to beat the welled up anger and frustration I have.

In my book, Thriving with Neurofibromatosis, I share stories of my childhood, while watching how NF affected my brother and my mom.  Never once believing that NF would also come to haunt me.

Ialso outline the steps I took, to help myself go from being afraid of NF, to embracing my own diagnosis, as well as the diagnosis of 3 out of my 6 kids.

The first step to truly "getting" my NF, was EDUCATION.  Without a full understanding of Neurofibromatosis and all of its unpredictable symptoms, there would be no way that I would even begin to understand that I could move beyond the diagnosis.

Every single day, I make the choice in how I will live my day.  Minute to minute.  Day to Day.  I am constantly learning new things about Neurofibromatosis and how it affects everyone who is diagnosed in different ways.

There is so much information (and misinformation) out there, and it's our responsibility to seek it out.  Educating yourself, puts you in a place of greater control.  The learning never stops.  We have to take ownership and become caretakers of our own disorder and learn what we CAN control, and what we cannot...What we can treat and what we must simply endure. 

Fear breads in the unknown, and ignorance leads nowhere.  Learning and reaching out to the information that is out there, is MY responsibility....YOUR responsibility.  The more I know, the more I am learning new ways to THRIVE....and to help show others that they can THRIVE too.

But Education is only part of the E.A.S.Y. way to Thrive....Tomorrow, is all about ACTION!

THRIVE ON! 

Thriving Thursday

More on Depression

It's a known fact that people with Neurofibromatosis suffer from depression. I mean who wouldn't be depressed with having a condition that alters you physically, and causes severe, uncontrolled pain?

Sometimes I still find it hard to accept that I was "tagged" with this disorder...and sometimes I still find myself wavering in my explanations to others, about what is happening to my body.

I am a work in progress....I continue to strive for the honesty, rather than the hiding or flat out deceiving others about my NF. Not because I no longer can "hide" my NF, but because it honestly feels good to talk to others about it. When I can teach another human being, and have them look back at me, with shock and amazement that I am 'doing so well' , I get an overwhelming sense of peace and happiness.

I don't take any medications for my depression. Mostly I take accountability for my actions and push through it. But I tell you what, it is HARD to do. I find myself struggling with keeping my moods even, and my spirits up.

If I could find a magic pill to take that would keep me happy, I would....but I honestly feel that there are no magic cures for depression. It takes a lot of acknowledgment and responsibility to manage your moods. Accountability and realizing that you are not alone...and sometimes, the hardest thing of all....reaching out to others.

My New Year Goals:

To Acknowledge I am NOT alone :)

To be a friend to EVERYONE--even the stinky /jerky people :)

To THRIVE with NF, in everything I do

To finish / publish / and sell my book

To donate and support CTF

To continue to support my fellow NFers! (I love you all)

To go to NIH and have surgery, and arrive home safely

To lose 30 or more pounds

To support the changes in my hubby's career

To help my kids THRIVE and stay healthy

Post your NEW YEARS GOALS!!!

Happy New Year