Tag Archives: NF

Playing DressUp

dress up

On Friday night, we celebrated the wedding of one of my wonderful friends from work.  Stefanie,  is one of my dearest friends.  Our Kindergarten team might be unique in this way, but we truly enjoy our time together and make it a point to do things outside of work as well.   We all took a half day off of work to get get “pretty” in time for the 6:00 wedding.

I left school and got my hair cut, colored, blown out and curled.  A luxury I don’t take the time to do myself.  We figured out while I was there that Carla has been doing my hair for 27 years!  Since I was 17.  My first visit with her, I was going to the prom when I was a junior in high school.   She french braided my long, brown hair and intertwined it with baby’s breath – so popular in the 80’s!  Not only did she do my hair for the senior prom, and my own wedding, but we were guests at each others wedding and baby showers.  Carla makes me laugh every time I visit the shop.  I probably get my hair cut and colored every three months or so and every time I go there, it is like visiting with old friends.  Carla knows me well enough to come right out and say, “no way” to something I might ask her to try.  We laugh because I very rarely keep the same color and try to change it up each time.  While she was washing my hair I told her that I was thinking of going to the mall because I needed to get some makeup.  I wear very little makeup on a daily basis. Some eyeliner, mascara and lip gloss is about it.  I thought, if I went to the mall, I could get someone to do my makeup for me and then buy what I needed. I am not a big fan of getting my makeup done because it draws so much attention to my face….all part of my self image issues!! She convinced me to stop thinking about it and told me I had to do it.  So, I did.

I decided to go to Bloomingdales at the Short Hills Mall, which is just a few miles away.  Several months ago, I had been in the mall and I walked through the makeup department.  I noticed a woman working at the Bobbi Brown counter.  I could tell that she had Neurofibromatosis.  I wanted to go up to her and speak to her but there were other customers there so I didn’t.  I thought about it for weeks.  Here was this beautiful woman, working at a makeup counter with NF.  Makeup….something I have always shied away from as to NOT draw attention to my face.

I had no idea what her name was so I could not call ahead to find out if she still worked there.  I decided to just go and hope to get lucky and see her there.  I walked to the Bobi Brown counter and there were several women working.  It was the middle of the day and not crowded at all.  All of the sales women were free of customers and asked if they could help me, but I really wanted to see if I saw her first.  I looked around, and there she was.  I went right up to her and told her that I’d like to have my makeup done if she had time.  She smiled and said, “Sure.  Do you have NF?”

That was all it took.  We became confidants on the spot.  I could have sat there for hours talking to her.  We had so many things in common.  Her chin and neck looked like mine.  She had gorgeous blue eyes and told me that we needed to accentuate my blue ones for the make-over.  I told her all about my self-image issues I have and told her how brave I thought she was for going into this line of work.

We talked about the different side effects my family members have.  She was the first person in her family to have it so had nothing to compare it to.  We talked about how some people think we are contagious and how we feel the need to preface ourselves or give a long explanation of why we have these “bumps” all over our bodies.  She would tell me things and I’d nearly catch my breath because it was so ME.  All my fears, and feelings of inadequacy.  She had so many of the same.  We talked about hating massages because of the fear of what others might think when they touched us.  We laughed about never wearing a bikini no matter how thin we were because we wouldn’t expose our torsos where the majority of the fibromas seem to be.

At the end of my session, not only did she make me look beautiful, but she had me leave there with my head held high.  We exchanged email addresses so that we could stay in touch.  I  feel like I have found a new friend.  Someone who can relate to something that most people cannot.  It was such a pleasure and I cannot wait to have another big party or celebration to go to s that I cano get “fancied up.”  It will be a great reason to go and visit with her again.


Getting Some Help…

teacher quote

As a teacher, one would think that I would be more on top of my own children’s education.  I cannot say that I have not tried.  Both my boys are those kids that every teacher has, that are just a “conundrum”.  Well behaved, never a discipline problem.  Grades not quite low enough to warrant team meetings, yet far from above average.  I have always been on top of DJ to work harder in school and still he is bringing home grades that are not much better than C’s in his major subjects, when I know that he is capable of doing so much better.  I know that based on his abilities, verbal skills and potential, that he is able to be so much more successful in school.  He was “that kid” who could read at age three and knew every state capital and location before entering Kindergarten.  He has an amazing memory.  Dave and I are not parents who expect our children to bring home straight A’s.  In our point of view, if they are doing their best and working to their highest potential, then we are satisfied.  Yet, since Middle School, I have just felt that there was a missing piece.  He sailed through elementary school, so I did not notice that there may have been something that was just not quite right.

I try to stress how important it is for him to succeed because college is not far away.  His lack of motivation concerns me.  I don’t know if he quite understands the importance of doing well and seeing the future at age 16.

Drew on the other hand, has struggled since first grade. Like, DJ, never to a point of more than parent-teacher meetings though.  As he moved up in grades, the work became much more difficult for him and he was falling more and more behind.  After his second concussion, it has been even worse for him.  Memorization, concentration and focus are the biggest factors.  Also, like DJ, never a behavior problem, and unfortunately, those are often the children who “slip” by.  Drew has two amazing teachers this year and they have been working me all year to find accommodations that will work for him to help him reach his highest potential.  They have been a blessing to us and I appreciate them more than they could ever know.

Dave and I talked a lot about it and it has always been in the back of my brain, but my three siblings all had learning disabilities growing up and had different variations of classification as students.  I know that our families’ diagnosis of Neurofibromatosis, (NF), is a big factor.  There is so much research done on NF and one of the symptoms is learning disabilities.  This summer, we visited a geneticist who gave us even more information on it.  I began communicating with him about Drew, and got medical documentation on it which I was able to forward to The Child Study Team at his school.  After routine CST testing at school, it was determined that many of the areas that Drew struggles in link back to NF.  This helped us to move forward and getting him an actual plan that we have begun to implement in his school.  As he moves forward to middle school next year, I know that it is going to be a huge factor in leading him to becoming a successful student.

As I sat with his CST, I realized that many of the plans we were implementing, would be beneficial to DJ as well.  I knew that it was really late into his schooling.  He is almost finished with his Sophomore year.  I went to the team at the high school to discuss what I have been seeing.  DJ was put through a lot of the testing that Drew was, (at a higher level of course).  In many of the same areas that Drew was lacking, DJ was too.  All aligning with NF.  We are putting a plan into place for him for is Junior and Senior year.

I am kicking myself that I let it get so far with both of them.  I wonder if things would be different for them if I had taken actions sooner.  I guess as parents, we always second guess ourselves.  I am just so happy that they both are now going to get what they need to help them succeed.  This Neurofibromatosis presents itself in so many ways.  For me, as I wrote in an earlier blog, it is cosmetic and the cause of so many issues I have with my self-image.  For my siblings, it was learning issues they have dealt with their entire lives.  Hopefully, for my children, by having Dave and I act upon this diagnosis, it will give our children every opportunity to be the very best learners that they can be.


roald dahl

Today, I came across these photos of a woman who began documenting her life in a series of photos called, “Self-Portraits”.  In the photos she was showing some of her most personal moments.

Take a look: http://shine.yahoo.com/photos/self-portraits-reveal-truth-body-slideshow/

Although I am not overweight, I really found myself identifying myself with this woman.  I have always been very self conscious.  I have a genetic disorder called Neurofibromatosis (NF).  It is not a disease but a disorder of the nervous system that causes tumors to grow on nerves.  It presents itself differently for everyone but one of the symptoms causes skin changes and deformed bones.  For me, this is the case.  It is not contagious.  NF causes tumors which are growths of excess tissue from the nervous system. Some people, like me, develop neurofibromas under the skin, which appear as “bumps”.  They are not usually painful but I find them ugly.  I have fibromas all over me.  Most of them are small but they can range in size.  They are on my hands, feet, neck, stomach, back, legs,…pretty much all over.  This has made me an extremely self-conscious person.  I wear my hair long and usually draped over my shoulders.  I find that it helps me “hide” behind it.  I love winter, when I can wear long sleeves and sweaters to hide my arms.  I wear a tank top under all of my shirts so that if my shirt raises to reveal skin, instead you just see another shirt.  I have one on my chest so I will NEVER wear anything with a v-neck or low cut.  I spend way too much time pinning my shirts so that if I bend over, no one will see it.

NF can present itself it many different ways, such as learning disabilities, deafness, and blindness. I try to remind myself that I need to stop being so vain because for me, the only affect that I have are “the bumps”.  I know that it could be so much worse. I can walk, hear, see… I have never been teased or mocked for it.  Most people, especially children, are just curious.  They want to know if they can feel them, or if they hurt.  I usually just tell them it is how I was born, sort of like a bumpy freckle.  The best thing about kids is, once they have an answer, they go on and forget about it.  I wish it were that easy for me.

There is nothing that can be done for it.  Yes, they can be removed, and I have had some of them taken off, but there is no way to get rid of all of them.  Some people who have them removed, wind up getting more of them because they grow on affected nerve endings.

I have learned to live with it.   I am aware of them ALL of the time.  When I talk to people, even though I know that it is all in my head, I think that all they are focusing on are the “bumps”. My husband doesn’t care.  He tells me that I am beautiful everyday.  I just don’t feel it.  I try to.  I really do.  I look at myself in the mirror and don’t see it.  I am embarrassed to say that I am mean to myself.  I call myself ugly names that I would never, ever speak to anyone else.  I sometimes wonder why I bother with makeup since I cannot hide them.

I know that beauty is not only on the outside.  It is my motto!!  I do have areas I try to focus on.  I love my green/blue eye color.  On a “good hair day”, I love my long hair. I don’t like getting my photo taken, but there are a few that I actually do consider myself pretty in.  Those are what I need to look at to remind myself of my inner beauty.  I know it is there.  I just need to find the confidence to find it everyday.