Tag Archives: fibromas

Being Idle


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.



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.