Say What!?

Have you ever said something, that you wish you could take back?  Put words out there that were insensitive, or just downright mean?

I have this neighbor, who approaches me, every few months, to try to sell me on her "special oils", that she tells me have cured, even the most aggressive of cancers.  "If you would just buy a few of my oils, I know your daughter's brain tumor would go away." she tells me.

Really?  Gee...If your oils cured cancer, then why the heck aren't you a bazillionaire, living in some mansion?  If your oils cured cancer...why isn't there a line around the block, ready to purchase your product?

The thing that people don't realize, is that Bailey doesn't have cancer.  She has a brain tumor, caused by Neurofibromatosis.  No oils, or special food, is going to take it away.  The only way to "cure" Bailey's NF, would be to have caught it before it reached her chromosomes....meaning, at conception.

But in saying that, it doesn't take away the fact that Bailey's brain tumor is very serious.  It's in a spot, where even taking a biopsy is considered too risky.  A spot that if it grows much more it could have a significant affect on her cognitive skills and personality.

My neighbor told me a few weeks ago, that I must not truly want Bailey "cured", because I have chosen to not purchase her oils.  *Hold me back*  I couldn't believe it!  I tried to explain to this woman, that her oils could not cure Neurofibromatosis...and she kept insisting they would.

I asked her, if she had any oils to cure down syndrome....or muscular dystrophy.  Her answer..."No, of course not."  She seems to think that NF is some kind of infection, and all I need to do, is rub some cream or oils on my skin and I will be "fixed"...Then maybe, just maybe, I'll live up to her idea of perfection.

I know that most people just want to help...They want to provide some "fix" for Neurofibromatosis....But what I would love, would be for people to stop trying to fix us.  We aren't broken...We aren't diseased ridden...We are wonderfully made, in the eyes of God.

Medical Monday

I woke up early this morning, to try to avoid the hustle and bustle of the first day of school. The alarm went off and I rubbed my eyes. I counted the hours of sleep that I have gotten over the last 3 days and was not surprised when I could use one hand to this.

Do you ever find yourself so completely overwhelmed by things that you have no real control over? I do this to myself all the time and often wonder if I am normal, or just totally nuts.

I lay awake at night (tv usually on) and think about things...anything from lost credit cards, crashed computers, conversations I had during the day...to things like if I remembered to lock the front door. It drives me nuts, but I can't seem to "fix" this.

I'm a researcher by nature, so I took to the Internet and found some really interesting articles relating progressive disorders, to anxiety. I found comfort in that I am NOT nuts, and that other people struggle with the same things.

Those who are diagnosed with Neurofibromatosis, or similar disorders that affect nervous system are twice as likely to suffer from anxiety than those who do not have a condition. That's A LOT of people dealing with overwhelming feelings of fear and hopelessness.

The thing that helps me with my anxiety, is to find some kind of outlet for the feelings I am having. Things that help me are; to journal, to go for a walk, or to call a friend, who won't mind if you "whine" to them. =)

If you are experiencing symptoms of anxiety, please know that you are not alone. Some signs or symptoms of anxiety may include:

*Uncontrollable or Obsessive thoughts
*Overwhelming feelings of panic or fear
*Nausea, Sweating, Muscle Tension and other uncomfortable physical reactions

Dealing with a diagnoses of Neurofibromatosis alone can bring on tremendous fear and anxiety. I know that the first time I heard my child being diagnosed, I felt like I was the only one in the world, dealing with this dreaded disorder.

But once I reached out (blogging for example) It helped me, 1)Understand and Research NF, 2)Build some amazing friendships and most importantly 3) Realize that I am NOT alone.

If you or someone you know is dealing with anxiety, please reach out for help. Chances are, when you do reach out, you will find an unbelievable sense of relief.

*Please note....I am NOT a doctor. I talk from what I experience, and what works for me. Seeking help from a medical professional is ALWAYS first.

Controlling the Fear--Impossible

Everyone faces fear at some point in their life. Some walk through fear every single day, while others may briefly pass it by. Fear of the unknown, is probably the greatest fear of all. Not knowing how something will turn out or wanting to control the outcome of a situation is something I fear all the time.

Why do I feel the need to have this control? Maybe it's because I don't feel comfortable with 'something else' in charge of my life. A 'higher power' that knows the outcome of everything I do, can be quite overwhelming.

But I do know this, when I choose to hand over my fear to God, things usually turn out pretty good.

Sometimes it's hard to understand that God has a plan for everyone AND everything. I often think, "Why does Neurofibromatosis exist, and how could it possibly be a part of God's plan for me?" Why cancer? Why sickness? I could spend my days asking WHY...or I could chose to DO SOMETHING.

Every year my NF gets worse....How can I possibly learn something from this? The fear of this condition, has strangled me, almost my entire life. It was only when I chose to take the control back, and then pass on this fear I had to God, that I could eventually stand up and breathe again.

Understanding that God didn't do this "TO ME", but instead is helping me do something WITH it, helps me get through the unknown. The power that fear had over me was what was killing me, not my NF. THIS was a hard lesson to learn.

I was brought up to believe that GOD controlled EVERYTHING. The good, the bad and everything inbetween....and it was HIM that gave us Neurofibromatosis. My mother would tell me that God hated us, and was punishing us. She would often curse God, and tell me to stop praying because God wasn't listening.

I was so confused growing up. I didn't know what to believe, but I did know, believing like my mother, felt awful....And I knew God couldn't possibly want me to feel this way. SO I began to pray in my closet. I would ask Him to help my mom....and I would oftentimes stay in the closet so long, I would fall asleep.

God doesn't want us to fear. He wants us to go to Him, especially when we are fearful and ask for help. That's the key...asking for help.

For I am the Lord, your God, who takes hold of your right and says to you, Do NOT Fear, I will help you. Isaiah 41:13