Friday, January 30, 2015

How Do You Manage?

I was asked by a mother, who is dealing with a new diagnosis of NF for her young son, what a life with NF looks like...And how we manage the everyday symptoms.

This answer is different for every one and there is no simple answer.  I wish there was a handbook...Or set of rules to follow....Heck, I wish that there was AT LEAST an affective treatment.

While Neurofibromatosis itself is not fatal; the symptoms definitely cause life to have to adjust to be able to manage and cope.

With the wide range of complications and variety of ways NF manifests, its hard to predict - or even give advice to families dealing with NF.  All we can really do, is rally around each other.

I know in my own family, with four of us dealing with NF...I can see how wide spread the symptoms are.  For me, I went 33 yrs before being diagnosed, even though, my symptoms were "obvious".  For my children, vision problems. learning disabilities, and dizziness were widespread...And detected early.  Even saying that...The 3 who have NF, are so different, and I have to pay close attention to make sure we aren't missing something.

Here are some ways our family manages

*Take each day as it comes.  This is so much easier said than done, I know.  But seriously, this applies to ANYONE.  No one can control what tomorrow holds...So trying to control it is wasted effort.
It is scary to be diagnosed with NF.  The what-ifs can easily consume even the bravest of hearts....I know that I have spent a lot of time feeling angry and guilty about how having this disorder is unfair...And it IS UNFAIR!
But spending time obsessing over something I cannot control - is something I had to let go of.  And once I let go - It was a life-changing experience, where I learned how to accept what is, and figure out ways to make the bet of it.

*Once the diagnosis is confirmed....It doesn't mean that all your research about what NF holds is true for you.  I have met thousands of people with NF...Not ONE of them is the same.  I don't care how many degrees a doctor has on their wall...There is no way they can predict the future.

According to doctors, my brother, who has NF1 and is 44 years old, should be dead.  So never hold the STATISTICS of whatever it is you are dealing with very high.

I have learned to not take the doctors word as the final word.  They are human, just like me...

*We hold up HIGH our strengths!  Everyone has something they are good at...In our family, we try to make THOSE things our focus.

*Understand what you are dealing with...But DON'T get wrapped up in it.  We take an active part in having NF...But we don't allow it to stop us...Or keep us from doing what we enjoy.

Go through the coping process
*Anger (it's ok to feel this....Just don't stay there)
*Learn (understanding helps)
*Take control (DO something! Teach someone! Inspire someone!)


Tuesday, January 20, 2015

The Unstable World of Stable

I am finding that living in the world of "STABLE" is hard.  ALMOST as hard as living in the world, where we saw the doctor every week, to monitor 3 brain tumors.

Let me explain.

When Bailey's tumors were discovered...It sent us into another world.  A world filled with weekly doctor visits, MRI scans, blood draws, fevers, nausea....Writing about it, being 2 yrs removed from that life, is surreal.

It's a blur...I don't remember how we managed.

We were given so much attention...And we felt "safe".   At least I DID.  We knew that if anything were to go wrong...That our doctors were RIGHT THERE....And that they knew us.  They knew our story.

Being "stable" scares me.  Because I know any moment, that could change.  Any moment, life can send us right back to that other world.  A world that we have become strangers to.

At our last MRI...The news of "STABLE" sent a very uncomfortable feeling -- "See you in a year!"  I should be celebrating this news...Right?  I did celebrate...But....

This news made me feel like these doctors have no idea how suddenly and abruptly life can change....You would think - that working with children with cancer, they would understand this!

They sent us away...Like ending a relationship...A breaking of hearts.

Don't they get it...?

Stable means NOTHING to me.

A year from now, we will be strangers to our doctors.  Our story forgotten.

I feel like the tumors in my daughters head, are just a ticking bomb.  I mean, they came from out of no where...We were blindsided, when they showed up on the MRI ...Why wouldn't our doctors want to monitor them more closely ...?  A year is a long time.

I keep reminding myself that STABLE is a good thing.  But we were stable before those tumors were found...Then got the wind knocked out of us.

I can't relax.  The moment I get comfortable with STABLE....Everything changes.


Tuesday, January 6, 2015

2015 Bucket List

I LOVE January!  A fresh New Year....Means a fresh New Start!  As I have said in previous posts...I don't really do resolutions....I just feel they set me up for failure...and who wants that?!

Last week, I was watching The Biggest Loser...Rob (my least favorite contestant) met with Dolvet to rappel  down a waterfall cliff and threw his typical tantrum.  He was scared.  He was filled with excuses.

In Rob's mind...He was still that 400 pound guy.

In THAT moment.  Rob became my favorite.  (I could do without the anger-infused crying though)  I related with him in a very personal way.  I totally got the fear.  The hesitation.

Today...I am at the healthiest weight that I have ever been.  Even my own doctor told me, that for a 40 year old mother of six...I was "perfect"...and that I should focus on "maintaining rather than losing"....

It's hard for me to wrap my head around the fact that I am not considered "FAT" anymore.  My mind ALWAYS goes to that-FAT-GIRL-who-needs-to-lose-AT-LEAST-100-pounds!  And in a lot of ways, my mind believes that I am still her.  As hard as I try to let that girl go....Parts of me cling to her...Because I am afraid to let her go.  Scared that if I do...I won't know who I am, without her.

It's such a hard and confusing battle.  I can't even begin to understand it.

I should be embracing the body I have worked so hard for...But instead, I use my fear, to stop me from doing things.

So...Today - I have my 2015 Bucket List.  Things that scare the crud out of me...But also excite me.  Things that - The 242 pound girl stopped me from doing....

  1. Rappel Down a mountain.
  2. Run a Marathon
  3. Scuba Dive
  4. Learn to Ski
  5. Camp with just a tent and a sleeping bag
  6. Para glide (scares the pants off me!)
  7. Volunteer in a soup kitchen during a holiday
  8. Do public speaking for an audience of 1,000 or more (GULP!  I have done it in front of 250)
  9. Get a tummy tuck (losing 120 pounds is great...but the aftermath is not so wonderful)
  10. Have the honeymoon with my hubby - that we never got the chance to have!
  11. Learn to play an instrument
  12. Go on a cruise
  13. Be comfortable in a bathing suit - in PUBLIC
  14. Get a tattoo
  15.   Zipline.
  16. Update scrapbooks
  17. Paint - 
  18. Take pictures- 
  19. Send "thinking of you" cards out 
  20. Go to a party that does not include children...and be SOCIAL. *yikes*
  21. Get some of my tumors removed
  22. Spend time in a hotel room...and order room service
  23. Get on TV
  24. Learn skills to fight off a potential attacker
  25. Learn to ride a motorcycle 
These are just my TOP 25....All are do-able if I WANT THEM TO HAPPEN.  I have to let the fear go.  I have to realize that, that 242 pound girl is someone I have to let go of.  Just like a past relationship....I have to learn and grow from that person...So that I can be a better ME NOW.