Monday, September 20, 2010

Eye See No Answers

I held my breath almost the entire time Rachel was reading off the letters on the chart that was 6 feet away from her. The "O" was a "P", the "A" was an "F" and it continued to go on like this for a few minutes.

The Dr. stepped out of the room and came back in with a faxed copy of Rachel's chart notes. She made a few adjustments on the "butterfly glasses" and then asked Rachel to try again. This time it was MUCH better.....but I knew what this meant. Another change in her prescription.

Ugh!

Rachel sees the Ophthalmologist every 3 months due to Neurofibromatosis. She has Optic Pathway "thickening" and a Pituitary brain tumor....and has had a steady decline in her vision since May 2008.

"There's nothing we can do to save her vision, but we can make it so what vision she has, is good vision." Was THAT supposed to make me feel better? Was I to just walk away with that answer?

What I have learned from living with Neurofibromatosis myself is that you NEVER walk away with an answer that doesn't feel right. You stay until it is explained, and clear...(Not that anything having to do with NF is clear...but you must understand what is happening to your body or your child's body)

The problem here is, however....the Drs CAN'T explain why Rachel's vision keeps getting worse. The Optic "thickening" should not cause this. "Let's just keep an eye on this." Is the answer I am given.

So, even while our questions go unanswered, it won't stop me from persuing the answers.

Monday, September 13, 2010

"Walking Hurts Mommy!"

The 2nd Annual CTF Walk was yesterday...and it went really well. It was fun meeting other families who are also dealing with Neurofibromatosis.

The walk was a mile, just around a beautiful lake. My guess would be over 200 people showed up! AMAZING!

Lately--Rachel has been in screaming pain with her legs. She has been checked for the bone deformities that can often come with NF, but now I'm wondering if she has something going on.

We were just starting the walk, when Rachel begins to cry and point to her legs. "Mommmmy they hurt so bad!" I'd pick her up and piggy back her for a while, then let her down.

How many NF families have had to deal with leg issues with their kiddo? Rachel is 7, and has had no trouble till now.

I'm taking her in to the dr but wanted to see if anyone else's child has had NF related leg issues that were not diagnosed until 5-8 yrs old.


Sunday, September 12, 2010

2nd annual CTF Walk!

I'm excited today...It's the 2nd annual walk to support cure/treatments for Neurofibromatosis. My kids are excited too and dressing in green and blue.

This cause means so much to me and I appreciate all the wonderful support my family has received....without the support, the cause would be kind of pointless.

To all my friends who are dealing with an NF diagnoses....I love you all! To those who do not have the diagnoses.....Please do me a favor and spend a few minutes learning about NF.

Go to www.ctf.org and see what me and my family are dealing with.

And it's not too late to donate to CTF via TEAM THRIVE!

God Bless!

Friday, September 10, 2010

Who's YOUR Worst Enemy?


The other night at Life Group, the question was brought up...."Who is your worst enemy and Why?" I knew the answer immediately, but held my tongue, because I thought my answer would sound really stupid....or expected.

The other people in this group were talking about past bosses, co-workers, teachers, principals, when the answer floating in my head was..."ME". I couldn't think of anyone in my life, I have hated more than myself.

Someone else did finally bring up the answer I was holding back, and I felt better. I was glad I wasn't the only one who has really truly hated myself.

Who is YOUR worst enemy?

My worst enemy is filled with lies. She torments me constantly. She puts me down and tells me I am never going to be good enough. She fills me with doubts, distrust and fear....and while I know this is ALL lies, I find it hard to not find a small bit of truth in it.

I have been held back for so long by this woman. But I am working on letting go of her. Shutting her out and focusing on the truth.


Monday, September 6, 2010

Does your anger linger?

Are there times in your life where you wish you could re-wind a specific situation where you let anger get the best of you? Something you said, or did?

Growing up, I was used to anger. I watched as my mother would literally change into a different person, when she was angry. Her eyes and body language would shift and I was truly afraid of her.

She had a lot to be angry about...I mean, she was a single mother who was dealing with a child who had severe issues because of Neurofibromatosis. She was working non-stop, to try and make ends meet, only to come up short every month.

I would sit back and watch my mother sometimes, wondering why she was so angry...and thinking to myself I never wanted to become so controlled by this emotion.

Do I get angry? Sure I do. But I try to not let it be what drives me forward. Sometimes the anger can motivate me to change, but I quickly need to realize that if I let it hang around, it can push me in the wrong direction.

While anger is normal and healthy, it can lead to unhealthy and destructive behavior. I have often felt controlled by this powerful emotion...and I have watched it ruin the lives of people who I love very much.

Anger=Aggression. Typically when I am angry, I act out with aggression. My body tenses up and I am very unhappy. It's hard, once I am angry to come out of it, or to be reasonable. What I need to do, is to stop myself before my anger turns to aggression...or even stop my anger from even happening.

So how does THAT work?

Things that help me:

  • Breathe deeply, from your diaphragm; breathing from your chest won't relax you. Picture your breath coming up from your "gut."

  • Slowly repeat a calm word or phrase such as "relax," "take it easy." Repeat it to yourself while breathing deeply.

  • Use imagery; visualize a relaxing experience, from either your memory or your imagination.

  • Nonstrenuous, slow yoga-like exercises can relax your muscles and make you feel much calmer.

Problem Solving

Sometimes, our anger and frustration are caused by very real and inescapable problems in our lives. Not all anger is misplaced, and often it's a healthy, natural response to these difficulties. There is also a cultural belief that every problem has a solution, and it adds to our frustration to find out that this isn't always the case. The best attitude to bring to such a situation, then, is not to focus on finding the solution, but rather on how you handle and face the problem.

Make a plan, and check your progress along the way. Resolve to give it your best, but also not to punish yourself if an answer doesn't come right away. If you can approach it with your best intentions and efforts and make a serious attempt to face it head-on, you will be less likely to lose patience and fall into all-or-nothing thinking, even if the problem does not get solved right away.


Remember, you can't eliminate anger—and it wouldn't be a good idea if you could. In spite of all your efforts, things will happen that will cause you anger; and sometimes it will be justifiable anger. Life will be filled with frustration, pain, loss, and the unpredictable actions of others. You can't change that; but you can change the way you let such events affect you. Controlling your angry responses can keep them from making you even more unhappy in the long run