Tag Archives: Neurofibromatosis

Adding a Little More to My Plate…

making time

I got upset with myself when I realized how infrequently I wrote my on blog this year. I had been so faithful, writing everyday for over two years and then, just fell flat. Maybe it was a more hectic schedule? I finished two grad school classes in that time. I am still teaching Kindergarten, I volunteer a few days a month at an art gallery in town that sells the artwork of adults with special needs. I have been doing more photography work and still  I am still trying to work my Chloe and Isabel jewelry business…(this has started to fall to the wayside – not my intention, just not finding the interest from others although, still trying….)

SO, what did I decide to do?

Take on yet ANOTHER venture!! Where am I finding the time? I probably am not, but I am going to try it. After attending a vendor event with my jewelry, and not selling anywhere near as much as the other vendors, I began rethinking what they had that I didn’t and we realized what it was. They sell, “consumables.” Makeup and Jamberry nail wraps. They always run out, so people come back for more. Makes sense. I guess there is only so much jewelry you can own, (although I am sure there are some that would disagree!)

So, with the help of my friend Beth, I have started my Jamberry adventure and have become an independent consultant for them. The wraps are cute, stylish and fast and easy to apply. Easy and fast were the key words for me.

As a kid, I was a nail biter and because of my insecurities about Neurofibromitosis and my self image, I am not a big fan of showing my hands but I need to break out of this. I know it – and this is a step in the right direction….I hope.

Check out Jamberry nail wraps. They are cheaper than the cost of a regular manicure and you get at least one manicure/pedicure with each set you order. They sell them in adult and kid sizes too. Try a set and let me know what you think.

https://clairesinclair.jamberry.com/us/en/shop/party/home/81a586f7-38b3-456d-9936-909338237d98

Now, I have to run.  Off to take photos at a charity breakfast with Santa! This should get me into the holiday spirit – even if it is 65 degrees on December 12th in New Jersey!!

Anticipation leads to frustration!

patience

I was looking forward to today for over a week now!  The stitches were coming out of my foot!  Finally, I’d be able to walk flat-footed again.  My toes hurt from all the tip toeing around!  I got to my appointment a few minutes early and was taken in without even having to wait even though the waiting room was filled with other patients.  The nurse took a look at the sutures and decided the doctor needed to take a look before she could take them out.  I had a feeling this would happen. They weren’t ready to come out.  Eight more days of stitches and hobbling around.  The worst part is that they still hurt.  My foot aches.

I feel guilty even complaining about it.  After what I have seen Zach go through this summer and the rehab my dad has been going through, a few weeks of discomfort should not be making me so disappointed. But it is.  I have so much to do to get ready for the beginning of the school year.  I figured my timing was perfect.  I scheduled the procedure for right after camp ended figuring I’d be up and at it just in time for school to begin. 

The issue could be that I am doing too much.  I don’t really have a choice though.  It could also be that Neurofibromas are so unpredictable.  They are basically benign tumors that attach to the nervous system.  Of course there is a much more complex definition of what they are, but that is the basic explanation.  Because of them being a bundle of nerves, they don’t all heal the same way. A perfect example of this happened when I was twenty-one.  I had my wisdom teeth extracted and a nerve that was nicked during the procedure caused a part of my chin to be numb for years.  Not completely numb, and no one could tell by looking at me, but Dave and I had a secret little signal for him to let me know when I had food dripping from my mouth since I couldn’t feel it!!  I guess I knew even then he was a keeper 🙂 

So with my foot, there is still some pain.  Possibly because it is just in a place where I need to be standing on all of the time.  Maybe because the nerves are affected differently.  Whatever the reason, it is another week or so until we see how it heals.  The doctor wants me to begin to try to put more pressure while standing on it so I will try.  As for work, I will keep doing what I need to do to get my room ready.  The kids arrive on Thursday.  If all goes well, I will get my stitches out after school that day. That would mean only one day hobbling around with students there and by then, maybe my foot will be feeling well enough for me to wear a real shoe! 

 

 

Being Idle

20140813-103604-38164954.jpg

I have never been one to be idle. I can’t sit still. I have never been able to. “You have ants in your pants” my mom would tell me. This is proving to be a challenge as I sit here 18 hours after a very minor procedure on my foot requiring me to be of of it completely for “24-48 hours!”

I had two neurofibromas removed from my foot yesterday. They were in two spots on my left foot that were causing discomfort when wearing shoes. I have had them in the same location for as long as I can remember. Though born with Neurofibromatosis, most fibroids don’t appear until the teenage years. I am not sure if they got larger or what the reason is, but these two were causing some discomfort so earlier in the summer I sought out the advice of a dermatologist who said we could remove them if insurance approved it. This bothers me so much to hear. I am not having cosmetic surgery to enhance a part of my body, yet removal of these fibromas is often considered cosmetic. I have had others removed several years ago but again, they were causing discomfort and fortunately it was covered by my insurance. This time it was also approved but I was told I would have to be off my foot for awhile so I had to wait until there was no school or camp so it wouldn’t interfere.

In the past, when they were removed, I had been completely sedated. Most likely it was due to the location of them. Two were on my eyelids and another time one was removed from my hand between my fingers. I had to go to specialized hospitals for each of those. This left me a bit apprehensive for this procedure since I’d be awake through it all. Fortunately my doctor was very calming and walked me through it as he worked. It took less than a half an hour. The numbing shots I received in my foot were dreadfully painful, but once they took affect, it was much more tolerable. Uncomfortable but not too painful.

Anyone who knows me know that I like to talk. So, the doctor and I did just that the whole time. About college visits, (his son is starting the college process too,) about sports…whatever. It kept my mind off the procedure and was just what I needed to get through it .

My directions were pretty firm. Absolutely off off of my foot for two days. Keep it completely wrapped up the way they have it for five days and then wrapped again until all of the stitches are removed in two weeks. Lots of ice for the first few days. I am supposed to stay off it as much as possible for the next two weeks. I told him about going with DJ for a college tour next week and that there would be walking involved. He said that would be okay but to keep as much pressure off it as possible and rest it whenever I could.  I walked out of there with it wrapped and in my flip-flop. No pain, but my foot was still numb. I followed doctor’s orders and lay on the couch for the rest of the day.

Four hours into recovery, I was already bored!! I was grateful for my iPad and used it continuously, watched a lot of television and ate dinner on the couch. By ten, the numbness was wearing off though and it was hurting a bit so I went to bed. I couldn’t walk on it at this point so I crawled upstairs took some Motrin, climbed into bed and went to sleep. After a fairly restful night I woke and it hurt. Motrin and icing it again are working though. I have been in the recliner for four hours and am restless yet again. I can’t get around as easily as yesterday. Too much tugging on my foot where the stitches are. Fortunately we have a pair of crutches so I am using them to get to the bathroom and Dave is taking good care of me. A guess a good thing about it hurting when I walk on it is that I will have to stay off of it like I am supposed to.  Tonight, I am hoping to see our cousins who are visiting from Nevada. The crutches will come in handy for that. As long as the pain stays away, it will be fine.

I just bought a new book for the kindle, Dave recorded a Little House on the Prairie marathon for me, there are lots of snacks to eat and it is raining outside so today will be a good day to stay inside. It will go by quickly I hope. Maybe soon, when I am swamped with work and activities I’ll think back to these few days and realize how lucky I was to just be laying around with nothing to do…Maybe.

 

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.

 

Self Image

self love

I know that this is not something that I alone struggle with.  I have written about it more than once.  Having Neurofibromatosis truly makes me feel uncomfortable with the way I look.  It affects the way I dress.  I hide it as much as possible but I can’t cover up my whole body.

Our coaching group topic today was a tough one.  SELF LOVE.   We talked about comparing ourselves to others and that we need to stop doing that.  Whenever I am in an exercise class and there are mirrors, I am noticing every little imperfection on my own body while looking at what I believe is the “perfection” of the women around me.   A few of them said they do the same thing.  Made me think….is that what all of us are doing?  Even the ones that I think look great?  

Our leader Tammy made us go around the circle and name ONE thing we truly loved when we saw a photograph of ourselves or looked at ourselves in a mirror.  We were not allowed to say something we liked about “inside” it had to be something we saw on the outside.  Instead of focusing on our flaws and how we could change, we were forced to choose something that we loved, and focus on that.

As we went around the circle, it was hard!  All of us blushed and looked flustered or embarrassed when it came to our turn.  Yet, if someone had asked me to go around and tell each of these beautiful women what I found to be their prettiest trait, I could have done it without any hesitation.  As she called on us and we hesitated and stumbled over our words, the rest of us looked on with amazement and bewilderment because everyone of us could come up with something for the others while we had trouble coming up with one of our own.

Two of them have smiles that light up the room whenever they are in it.  Another has eyes that sparkle so much, I find myself captivated by them whenever I speak with her.  Tammy has hair that is funky and fun and it just lights up her face.  When she smiles, her entire face brightens.

When it got to my turn, I could not do it.  Tammy prodded.  She made me sit there in uncomfortable silence as I pondered it.  Sure, I love the color of my eyes…I really do, but the fibroma on the left side has made one of them droop and sag more than the other making them look unbalanced.  I never had a problem with acne growing up, yet the small fibromas all over the bottom of my face are all I see – though others tell me it is not as noticeable as I make it out to be.  My nose is just a nose – nothing remarkable about it.  So I said, “I guess my hair,” but I added, “because it is my shield and it covers the side of my face.”  So Tammy said, “Doesn’t count.”

She gave me a challenge.  I have to study photos of myself this week.  I have to look closely and scrutinize them I guess.  I have to come to class next week and tell what I think my best feature is.  What I think is truly beautiful about my looks.

I always like to believe it is what’s inside that counts and maybe that is true, because sometimes if a person is ugly inside, it is hard to find their beauty on the outside.  So if we are truly beautiful people on the inside, perhaps that is what others see when they look at us.  I try to find that beauty in everyone.  My goal this week is to find it in myself as well.

And…it is not as easy as you might think, so I challenge you to do the same.  Really think about it.  What do you think is your most beautiful physical feature?  Do you think others would say the same?  Was it easy for you to come up with or did you struggle to come up with something?  I am curious to know!

Advice from a tree

advice from a tree

I find so many inspirational quotes on the internet.  As I thought about what to write about today, this one came to mind and I realized that over this year, while writing my blog, I have touched upon many of these ideas already.  My blog has really inspired me to try new things and look at things with a different perspective!  So here are just some of the ways I have followed the “Advice from a tree”.

Stand tall and proud – I only began writing this blog in January.  It was my New Year’s Resolution.  I vowed to write everyday and so far, I have done it!  A few weeks ago I got to 20,000 hits!  I have amazed myself and it has motivated me to keep on writing!  https://aprojectforkindness.wordpress.com/2013/06/19/20000/

Sink your roots into the ground – I am not sure if I have written about this yet, (and now that I think about it, it would really make a good blog),  but I laughed when I read this one because of how incredibly sunk into the ground I am!  I live in the town I grew up in, I teach Kindergarten in the same classroom that I was in when I was in Kindergarten myself and my entire family still lives locally.  I don’t know if my roots could get much deeper!

Be content with your natural beauty – This was the hardest blog I wrote so far.  I still cannot believe that I had the courage to actually post it.  I still struggle with my looks and my flaws and writing about it and seeing how other people saw me was truly eye opening.   https://aprojectforkindness.wordpress.com/tag/beauty-on-the-inside/

Go out on a limb – I was never an athlete growing up, (and although I would still not really give myself that title even now), a few years ago, I would have never imagined that I’d be kickboxing, running 5ks’ and doing mud runs…but I am!!!  https://aprojectforkindness.wordpress.com/tag/mud-run/

Drink plenty of water – Well, I have not written directly about this but… I did write about letting down your burdens and relaxing in  https://aprojectforkindness.wordpress.com/2013/02/20/how-heavy-is-this-glass-of-water/

Remember your roots – I did not even bother to link to the all of the posts I have written about my roots because the majority of the posts I write talk about family and there are very few roots that are as strong as family ties.  If I were to link to all of them, the list would go on and on…

Enjoy the view – This is a perfect way to end today’s blog because I hope that I have inspired my readers to in fact, “enjoy the view”.  I hope that they look forward to reading what I have to say and that my words give them insight, or enlighten them when they read them.

Made My Day!

children teach about life

After spending a lot of time focusing on self-image, I had to laugh out loud today.  I may have mentioned this in an earlier blog, but if you ever need cheering up, or a huge boost in confidence, just spend a day in Kindergarten.  There is never a shortage of love letters, or kind words from the kids.  Everyday, I receive them.  Today something made me actually laugh out loud.

My classroom was very warm this afternoon.  We do not have air-conditioning in my classroom.  In my earlier self-image blog, I mentioned that I will VERY rarely wear my hair up because I am so self-conscious about my Neurofibromatosis.  Today, I got so warm, I grabbed a hair tie and whipped it up into a messy bun.  There was no mirror in the room, so it surely was not done in any fashionable style.  I just had to get it off my neck.  It was during “center time” so all of the kids were busy in small math groups playing math games.  All of a sudden one of the boys in my class called out, “Whoa, Whoa, Whoa”, in a very loud, excited voice.  I looked over to see what was wrong and he said, “who did your hair????”  I had to laugh, and said, “I did it myself because I was so warm – why….does it look okay”.   He enthusiastically said, “Yes” and another boy said, “I am thinking it looks….” and he paused to think of the right word, “AMAZING”, with a big sigh.

Talk about a boost to my self-esteem.  I just adore them.  It made my day.

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.

Inner-Beauty

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.