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.  

Who is Listening?

Communication is the key to better understanding, right?  I am typically clear with how I try to get people to understand what it is I am saying.  But there are some, who just choose to not even try to understand.

I was referred to an Endocrinologist to further investigate the NF tumors scattered all over my thyroid gland.  These tumors cause no pain, or obvious symptoms, but they are there.

I met with a doctor who is in his 70's.  I could tell right away this man was going to be the type I would have to stand my ground with.  The first words out of his mouth was something about fibromyalgia...."No, not fibromyalgia...."Neuro-fibroma-ma-tosis", I said nice and clear.

He looked very confused.  "You know there's no cure for that?  What exactly were you looking for me to do?"....Uh...gee Doc...Your job, maybe?

I know there is no cure for Neurofibromatosis.  But there is nothing I hate more, than being dismissed, like I am some leper, who just needs to go back home to hide.

Being robbed of hope, from someone who has known me for 2 minutes?  Not gonna happen!

First of all, if you have read any of my previous posts, you know that this kind of attitude from a doctor, doesn't fly with me.

After the doctor said that he couldn't help me....I got up and walked out the door.  He didn't examine me, didn't take any kind of history, or look at any of the MRI, Ultrasound notes....Just simply put no effort in trying to understand me at all.

Sometimes, it takes standing up, and walking away....to get you on the right path. The path to 'Thriving', takes effort...And I know I am worth the journey.  It's time to clear the path of its road blocks, and press on!

As Always--Thrive On!

Have Faith.

In the game of life...the odds are often stacked against us.  Pressure. Fear. Anxiety, are knocking at your door.  You have a choice to make.  You can chose to doubt yourself and gripped by fear...or choose to believe you have what it takes to overcome it.

Today TWO of my children will be at the Children's Hospital in Aurora Colorado.  I am finding myself fearful of this visit.  My mind fluttering with "what ifs".

It's normal to fear...to dread the results of an upcoming medical tests...But what good does dreading it do?

I come from a LONG line of worriers, so it's only natural that I follow suit, right?  Nope!  I'm all about breaking the cycles I grew up with.

While I do still worry and dread....I don't make my life all about that.  It takes work to refocus your mind and to expect the best out of a seemingly hopeless situation....and without trying it, you may never know the true grace that can be brought to you by God.

Letting Go.

It's a tough thing to do.  I always seem to find myself in this tug-of-war with God.  I'll give Him my fear, anxiety and worries....but pull them back, thinking I can handle the stuff on my own.   Ya... a Tug-of-war with the most powerful being in the universe.  Crazy!

So today....while I do worry and fear the results from the MRI my daughter is going through....I will release it and give it all to God.  Only HE knows the results, and only HE can give me the ability to handle, whatever the results may be.

Today, my choice is to NOT be gripped by my fear.  Today, with God's help, I believe that fear has no power over me, or my children.  Today....I expect a miracle!

THRIVE ON!