Tuesday, August 31, 2010

Eye Eye Eye!

I haven't written much about Rachel lately...mostly because her symptoms have remained stable. She is a healthy thriving child, who has Neurofibromatosis.

The main concerns with my tiny bundle of energy has been her eyes. While she does not have an optic glioma, she does have a brain tumor, and narrowing her her optic pathways. This being a main cause for diminished vision.

Yesterday, Rachel came home with more than "normal" crossing of her left eye. I thought she was being goofy making her eyes cross, but as we walked home from school, it was apparent that Rachel had something going on.

I called her pediatrician and she was seen within the hour (wow!) This was Rachel's first visit with this Dr. So we had to first unload Rachel's complicated medical history in regards to NF. This dr wasted no time, in referring us to the Children's Hospital in Aurora where we were to be seeing the Ophthalmology department, the next day.

So, this morning, after Bailey left for school, we headed to the Orthodontist, for an assessment for braces. Keeping THIS appnt was important, and I kept watching the clock, knowing we had a very important Eye visit.

After the orthodontist, we drop Riley and Braden off at their schools and head to Aurora.

A thorough examination showed that in fact the crossing was an issue. Rachel did well with the initial exam but typically her crossing does eventually go back to normal. Not this time....this time her eye seemed to be stuck in a crossed position.

Rachel begged the doctor, "Please don't make me wear the patches, I don't like them!" But this is very likely to happen...even though the last time we went through this, it didn't seem to help much.

We got a new prescription which is for bifocals, and raced to get my kindergartner to school on time. When I got home, I was looking forward to some time to unwind and get some laundry done....then the phone rings.

We were ordered to go to the North Campus of the Children's Hospital for a sedated MRI of Rachel's orbits and optic pathways. Ugh! I go and pick Rachel up from school and we head off to the hospital.

The MRI took about 50 minutes and we waited while the sedation wore off. Again I raced to the school, just in time to pick up the kids. I didn't really even have time to think today...It was all about racing from point A to point B.

I have no idea what's going on with Rachel's eyes...but I do know we are going to find out. It helps that she is her funny, silly, ornery self. Her spirit is what keeps me going. The fire inside her makes me know that no matter what she faces, she will get through it with no problem.

We are a family who THRIVES. Things are placed before us, and we can choose to look at these things as problems, or we can choose to see them as simply things to overcome.

Thrive On!

Monday, August 30, 2010

I'm Rubber...You're Glue!

"I hate school Mom, PLEASE don't send me back there!" This was the text I got from my daughter this morning. It's the second week of school and already the vultures are decending on my 8th grader.

My daughter has always been socially akward. She doesn't fit in it and oftentimes can be found sitting alone. She is quiet and shy and has a hard time initiating any type of conversations.

The complaints I get from my daughter, have been the same since Kindergarden. "No one likes me." "No one wants to hang out with me." "They call me ugly." "The girls whisper and make fun of me behind my back."

This is all too familiar to me. I had a horrible experience in 8th grade. Being the new kid didn't help. I was always "different" than my peers. Chubby, with glasses, I was a prime target for endless teasing.

Until one day, I chose to stand up for myself. I was done with the rocks being thrown at me. I was done with the fat comments. I was done being the subject of many jokes.

I remember that day. Hot faced....I felt the power and courage fill within me. I whipped around, took my glasses off and asked this boy why I was so important to him, that he had to go out of his way to make me feel like crap.

He really had no responce, but I told him to grow up, and that one day he would be bald and fat, and may end up being on the receiving end of some cruel jokes. I told him to spend his time on something else, because I wasn't going to let him affect me anymore.

Eventually he did stop, and I had a pretty good year from then on. But did I really let go of him affecting me? To this day, I can remember how I felt...I relive the power this kid had over me over and over...so much for letting go, eh?

Even now, I find myself wishing... "If only I could have flawless skin and be thin...maybe people would like me." "If only I could have enough money..." "If only I could have a better personality." If only....

The teasing and bullying never really stopped for me....because I still let it affect me. I let what other people think of me, control my attitude and even what I stand for sometimes. I find myself trying to live up to the standards that other people set.

As for Bailey, all I can do is love and support her. She has the strength to overcome this. I am trying to teach her (and my other kids) that they are beautiful and strong people.

When kids bully and tease, I want my kids to know that THEY aren't the problem. It's not their fault. Some kids just need to feel in control...they like the power they get from picking on someone. They think it makes them inportant...or popular. Sometimes kids do this, maybe because it's the way they are being treated at home.

*Create a buddy system (strength in numbers)
*Really listen to your child, let them vent
*Contact the school

I know that my daughter is in pain. It hurts me, that she is hurting. But as her parent, I have to help push her fwd, and continue to encourage her. (even though what I want to do, is pull her out of school and protect her)

Sweet Bailey, those that matter, know how precious you are. Those that matter love you and support you. Those that matter will be by your side.

Thursday, August 26, 2010

Life with Pain....

As long as I can remember, I have had pain. I remember one time when I was 8 yrs old. I was in 3rd grade and fell out of my chair. The children were laughing at me, and I couldn't get up off the floor.

The room was spinning and I felt sick to my stomach.

I remember looking up at the ceiling, feeling like I was on a boat. The rocking and swaying confused me, because I knew everyone around me was standing still. The teacher grabbed my arm and pulled me to my chair.

I layed my head down on my desk and shut my eyes. This was the first time I had ever experienced something like this and it scared me. The dizziness finally stopped and I was able to join my friends who were playing outside.

Episodes like this were few and far between, but when they would happen, they would send me to the floor, grabbing my head. Phone calls to home, from the school, went ignored. My mother didn't have time for another sick child.

Mom worked hard. A single woman, who was not only dealing with Mike, who had NF, but she was also dealing with her own deteriorating health and she didn't have time for more issues.

I stayed quiet for the most part. I was not diagnosed with Neurofibromatosis (yet) As far as my mom was concerned, I didn't have it, so she didn't have to worry. Even tho the doctor who had diagnosed my brother, also examined me, and the cafe au laits spots were noted, my parents were never told I also had NF.

My symptoms remained hidden. I was fearful to talk about anything I was feeling, because I never wanted to take away from Mike. He was the one who was sick. Plus what he was experiencing was scary to me, and I never wanted to end up like that.

When I became a teenager, the headaches and "episodes" got more frequent. I remember going into my sep-mothers medicine cabinet, looking for anything that said it was for pain. Luckily the only thing I ended up with was Advil.

I hid for years with my pain. Emotionally, Physically, Spiritually. I remember visiting the doctor two times as a teenager. (once for a wart, once for a girl scout physical)

I never talked about my pain to others, because I knew what it would bring....

It was not until my own diagnoses with Neurofibromatosis, that I would finally feel comfortable with expressing what so many others who also had NF were experiencing. It was almost as if this rush of freedom came over me.

I am finally free to express that I do in fact have pain. That it does not make me weak to talk about it.

Maybe if I had been diagnosed as a toddler, my life would be different. The endless suffering would have been "fixed". One can never know.

But here I am. A almost 36 yr old woman, living with Neurofibromatosis. I hurt on a daily basis. I am not ashamed or afraid anymore.

Thrive On!

Wednesday, August 25, 2010

NF Connection!

I met someone today who has Neurofibromatosis. It was a weird, yet familiar feeling. Like meeting up with someone you haven't seen for a really long time.
As I got closer to him, I saw a severely affected person who was trying to hide himself with a hooded sweatshirt and glasses.
It was 90+ degrees today.
He had a dog with him, which made for an easy conversation piece. A huge Great Dane, who practically threw me to the ground to lick me and let me know that his owner may in desperate need for a new friend.
I could tell the dog was old. Despite his energetic embrace, he hobbled away, limping, then resting in the shade. The dog's body came up to my chest, which made me and this gentleman laugh. "You could ride him!" he joked.
I smiled as this man and I finally made eye contact. "My name is Kristi." I stuck out my hand to shake his. "Doug", he smiled and grabbed my hand. "Say, are you on Facebook? You look very familiar", he said to me.
"Wow", I thought...."No way!"
I told him who I was on facebook, about my website and my blog. His response to me almost made me melt. "I am one of your avid readers...." This truly shocked me, because I have never met a reader of my blog. Well, except for family, of course.
As we talked, I could see the walls that were built around this man go down. He took off his glasses. Then slowly pulled his hoodie off of his head. We continued to small talk, until the bell rang for the kids to get out of school.
Through our talk, I found out this man is alone, with 2 young kids, both who also have NF. One Rachel's age, one Riley's age...and he lives just a few blocks away. An amazing connection was made today....and I actually thanked God for my NF. I praised, because I knew God's plan. It was staring back at me and plain as day, today.
A few hours later, I got a Facebook message that read, "It was so nice to meet you Kristi, sorry about my dog, and thank you for teaching me a very good lesson. Thank you for showing me how to THRIVE with NF. I look foward to seeing you tomorrow."

Monday, August 23, 2010

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.

Monday, August 16, 2010

Education and Neurofibromatosis

As many as 65% of children living with Neurofibromatosis have some type of learning disability. Preparing your child and the teacher is assential for a successful school year.

Aside from the physcial aspects of Neurofibromatosis, it is up to the parents to advocate for their child, in order for them to get the most out of their education.

Out of my six children, three require special services and an IEP's (Individual Education Plan) It can be quite overwhelming when school time rolls around....The meetings and planning take a lot of time, however they are vital.

The first thing that is important for the child's teacher(s) to understand is what Neurofibromatosis is, and how it affects your child. The child's specific disabilities must be addressed and acknowledged.

For our family, the three children who have been diagnosed with Neurofibromatosis have very different disabilities. What works for my 12 yr old son, does not work with my 7 yr old daughter and vice versa. My 14 yr old requires a lot to motivate her, while my 7 yr old is energized and willing to do what is asked of her.

Understanding Neurofibromatosis, can help in a major way in understanding how each child with this disorder learns in the classroom, and how you as a parent play a very important role in their success.

The Children's Tumor Foundation has created a wonderful resource for parents who have children with NF. I have printed out several copies and given this to ALL of my children's teachers. Not only was it appreciated, it has helped the teacher a get much needed understanding of this disorder. Please feel free to take a look, and print this out, for your own records.

Good Luck to ALL the families as their children go back school!

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

Tuesday, August 10, 2010

How Influential Are You?

My husband told me about this really cool experiment that FAST COMPANY is taking on. Setting out to find the most inluential person on-line. WOW, that's quite the task!

There are millions and millions of people on-line and probably hundreds of thousands who feel they impact lives. So what exactly are they looking for?

The most popular? Or truly the most influential? There is a huge difference between the two.

What if we got thousands to click this link....Making someone who has Neurofibromatosis, the most influential person on-line? What kind of recognition could we bring to the awareness of NF?

This could be HUGE! This could bring attention to NF, that we have been looking for! At least it's worth a shot right?

So heck click on the link, and let's get NF out there! http://fcinf.com/v/cfcm While I do NOT claim to be the most influential person on-line, I feel that people in general living with NF are influential! Let's make an IMPACT!

Sunday, August 8, 2010

Positively Negative!

"How can you possibly be positive when you are living with such a horrible condition? I couldn't possibly live with all THOSE bumps!"

I was told this not too long ago, by one of my "friends". "I just don't understand you, and your attitude towards NF." My response was simply this, "When I choose to feel good....I do good, I speak good, and THAT makes me feel even better. I CHOOSE to be okay with Neurofibromatosis, even when it really sucks."

This person will probably never grasp the idea of positive thinking, and while I am sad about that, I cannot focus on how horrible this person's outlook on life is. All I can do, is try to present how it is possible to be wonderfully okay with life.

I grew up around negative people. My mother being the worst of all. Even to this day, all I hear when I speak to her is how bad life is, and how it's everyone Else's fault for her being so miserable.

My mother also lives with Neurofibromatosis. I am sure she hates it, just as much as I do. But I watch in awe how vastly different our lives are. It's almost as if I feel a sudden shift of gravity, every time I am close to her. The weight of her anger and sadness resonates to me, and I begin to act like her. It's scary to me when this happens and pulling away from this is very hard.

This got me thinking recently about who I am hanging around....who are the people in my life that cause this to happen? Why do I continue to be drawn to these people? The answer is simply that I relate with how these people feel. I understand the loneliness, the anger, the frustration in regards to NF.

But here's the big difference, while it's okay to feel these feelings (and I feel them every single day) It's not okay, when those become the only feelings you feel. One must make a very conscience effort to shift those feelings into something productive.

It's not an easy task...I fail all the time. But I never give up. I am not sucked in by Neurofibromatosis. I don't focus my energy on this disorder, instead I find ways to live past it. I try to surround myself with people who will acknowledge me for more than "The woman with the tumors on her face."

It's amazing how I feel when I am around these people. It's almost as if, I don't have NF at all. I feel empowered!

I know that living with Neurofibromatosis scares a lot of people. I deal with that same fear. I can't control NF, but I can control the way I feel about it. Your attitude is in your control.

I choose to live. I choose to THRIVE.

Tuesday, August 3, 2010

Never Never Never Give Up

I was 7 years old the first time I heard this quote from Winston Churchill. There was a poster in my 2nd grade classroom, that I would stare at and I often got lost in thought about how even though my world around me was giving up....I would never do that....I would always stand up for what I believed in.

At 7 yrs old, I could not possibly understand all that I would be faced with as far as living with Neurofibromatosis. As far as I knew, I didn't have it...It was something my brother was dealing with. I promised that I would never give up on my brother...that I would always be there for him.

Twenty-five years later, I was faced with the reality of being diagnosed with Neurofibromatosis. It took my a long time to accept this reality...and I wasn't always positive about it. Having NF was a hard pill to swallow for me. It was almost as if, I just wasn't ready for all that this reality brought with it. I was scared, and realized, I had been living in deep denial for a long long time.

After three of my children were diagnosed and receiving treatments for NF, this reality became something that I needed to more than just "deal with". I needed to become an example of strength, to help guide my children in a positive direction.

"THRIVING", has become a way of life for me and my family. We "NEVER NEVER NEVER Give up" on things that are placed before us. The road is not always easy, in fact it's rarely easy, but the alternative is not an option.

Monday, August 2, 2010

Who's Right?

What do you do, when doctors don't give you the news you want to hear? "The tests are negative....." "The test came back positive.........." "No surgery is needed.........." "This is urgent......." I have dealt with all of those statements from my own doctors and now I am dealing with them for my kids.

I even found myself a bit disappointed, when my MRI results came back "normal". There were no answers for my symptoms and I became frustrated. I didn't necessarily want there to be something wrong, but I was hoping for some kind of solutions for my pain.

Now with dealing Bailey and her current issues, I am running circles around these doctors who are giving me conflicting information. One says "The sooner the better." In regards to her surgery....another says "we should wait and watch."

While I don't want to put Bailey through any unnecessary surgery, I am finding myself confused at what we push for. What one dr. concidered urgent, another feels the need to put this off.

When people go for a 2nd opinion....who's opinion do they take?