ADHD?

I am wondering if there is anyone who has NF also has ADHD?  I do not know if I have it.  I did a self assessment on line just to see, and it says I may and that I should talk to a doctor.  I talked to my PCP and he suggested that I go talk to a psycharist about it.  I am one that cannot sit still.  I will have like four,five, six things going on at once and I do not know which one to do.  For example, I have my wish lists, blogs, journal, all open at the same time and I do not confused or anything, I just do not know what I should finish.  My moods can be up and down (not as bad as they were) but  my mind is always going and once I think of something, I need to start it even though I have five or six things going on at once. 

I realized

Call me crazy, but I have kind of realized something.  I have tons of friends on faceboook who have NF and a majority of those friends who have had tumors or have tumors are located on the left side, whether it is the left eye, left side of the brain, and so on.  And also I might jumping to conclusions here, but most people's right side is the dominate, like writing and what not.  So if the right side is the dominate, and the left is not, but tumors happen on the left side that is not dominate....?  Am I losing anyone or do you know what I am talking about.

Bummer

Back in October 2010 I went to see my NF doctor.  I was told that there was this study in progress with a laser treatment to remove small cutaneous tumors that are growing.  They were just doing the ones on the face to see how it panned out and then go from there.  I was told to call in three months to find out if it was working and if so, I could check it out.  So I called tonight and spoke with the Clinical Research Coordinator.  She said that the one person who is doing this has shown no results.  They have tried several lasers and what not, and some lasers are more powerful than others on the ones that they have been using and nothing is shown to be removing them.  
I believe that this is still possible.  There is a reason why it is not happening now.  Maybe down the road there will be a cream found and tested to remove the tumors, if not remove them, then shrink them.  I do believe that there is hope and I am just staying positive.  There are a bunch of people working and researching a cure for NF, in time I think that something has to give. 

my first baby picture.  I think this is before I was diagnosed with NF

thth

Happy Day

Why does it seem that most of us are not happy with ourselves.  By this meaning, when people say.. I wish I had more money, I wish I had a big house, i wish I had a new car, i wish I looked like this and so on and so forth.  Of course I find myself saying these exact same things, especially with NF.  Of course I wish I did not have it and I wish I did not have the "bumps".  But I do and there is nothing I can do about it (yet- who knows maybe there will be a cure and they can go away) but for now it is what it is.  I am not going to get upset or dwell on something that I can't change.  All of us (in general) need to be happy with what we have instead of being upset and wishing on something that we do not have.  Guaranteed there are millions of people out there who love to switch places with me and there are people are there who have a lot less than I do and wish they had what I had.  I have a roof over my head, a wonderful husband, wonderful family and friends (Love you all), a good job, and so much more.  If only we took the time too look at we have- we have it good compared to a lot of people out there.  We just need to keep the faith and thank God every day that we get to get out of bed in the morning and do our thing. 

Love it

Randomness

I am a little upset with myself.  I keep saying that I am going to write something everyday on my blog and I have yet to succeed in doing so.  I am lucky if I do it once every other week.  I go to work, come home, cook dinner, shower, and then I go to school on-line for a few hours, and then make the lunches for the next day, and wash up for bed, and before I know it, it is just about 11:00pm. 
I was having pain on my right side, the same place I had my surgery when I was  nine years old.  So of course I was freaking out.  I know the pain back then was horrible- i could not even walk without help, and if I had to sneeze, I screamed cuz the pain in my side was brutal.  But what i do not remember is how the pain started- did it start out like this and just got worse, or was it bad right from the start.  Well anyway I have no more pain, so maybe it was just a pulled/strained muscle.  Most of the time when I get an "ouchie" I think the worst.  I kind of get into panic mode and want to see a doctor right away- just in case.  I know I should think negative, but I am a "what if girl". 

New Bumps

Ok so there are times when I think I notice a new bump, but I do not know if it has been there or if it a new one.  It does not bother me as much as it used to- it is who I am.  I e-mailed a research person from my NF doctors office about a study/research thing they are doing to try and get rid of the bumps that are underneath the skin- they want to do the face first. Have not heard anything, so I will just keep on e-mailing until I get somwhere. 

Hard Choices

Life if full of choices.  Some are hard and some are easy.  It is amazing to know that everyday we make probaly over 100 choices a day.  We make the choice of what we are going to wear, we make the choice of going to work or calling in sick (playing hoockey), we make the choice of what to have to for dinner, lunch, I am sure that you get my drift.  One of the hardest choices that I had to make was the choice not to have any children.  Of course I was not alone in this choice.  My husband and I talked and talked about it just about every night for a few years.  Knowing that I could pass NF down to my child scared me and also knowing that if my child did have it they could be worse off then I am.  What I went through growing up (the surgeries and the teasing) was enough for me to not want to make an innocent child go through that. Are my husband and I selfish? Some people think yes, that we should've taken the chance and see what happens, and some do not blame us for the choice.  Am I sad that I can't have children? Yes I am at times. But in a lot of ways my void is filled for the fact that I work at a day care with wonderful children.  There are times where I wish I could take them home and cuddle them and what not and then there are times where I am so happy to part company for the night- LOL.   What gets me upset is that there are a lot of people who have children that should not of even had kids. Either becuase they are just horrible people and there are parents that their career comes first. Are these people insane. I understand that parents need to work, but if you know before having a child that you are going to be dropping your child(ren) off at a day care for 12 hours a day- then DO NOT HAVE A CHILD YET! I am the one that is seeing them grow and learn, and talk.  I have also seen a child's first words and first steps. Shouldn't the parent see that. Also I have children call me "mama", and of course I correct them. But picture it, a child gets dropped off at 630am and gets picked up a 530pm-600pm. Child goes homes, has dinner, a bath and by now it is say around 730-800, time to go to bed. REALLY?? So the parent got to spend what an hour and a half with their child and the day care worker spent 12 hours.  Is it me or is there something wrong with this picture?

New Year

Will 2011 be the year that there will end up being a cure of NF? That would be awesome, but if not then we just to keep praying about it, that someday there will be a cure. 
I am still thinking of writing a book about my life dealing with NF.  I keep telling myself that I am going to write down idea and get it started, but have I done that yet- no :(  I do not know why I keep procrastinating on it. I need to get the ball on the road.

Everyday is million of choices

So I am sitting around one day- I think I was people watching- something that I do all the time.  I see people who are happy, sad, angry, aggravated.  Kudos to the happy person. But why the sad, angry, aggravated ones.  DId they have a bad day at work, or just a bad day in general. DId they go to the stroe only to find out that what they wanted the store did not have (I guess they could not find any substitutions)  Did two friends get into a fight? I sometimes will make up stories about people- funny ones.  I hate seeing people upset and angry- I mean we should be happy all the time- yes it is hard- things will tick us off- but will that tick go away after a minute or is the tick going to follow you around for the rest of the day and bring other people down with you.  That is your choice.
Everyday we make a choice, we make a choice to get out of bed in the morning- and for those people who just want five more minutes of bed time (this is me) think about the people that wish they could just have five minutes being out of bed. All of us drag going into work, but think about this: WE HAVE JOBS!!Another person would kill to have your job, no matter what it is.  You might be thinking ok buddy take the job, I will go home, watch tv, and what not... trust me you will get bored after a while. No fun staying home when no one else is around cuz they are working.  If you think you are having a bad day... well then how about that cancer patient who has to for another round of chemo, how about a first time mom losing her child from a miscarriage, or a mom gives birth to twins, but one passes.  Men and Women who are fighting for our country to make sure USA is going to be safe.  I do not hear them complining about their day.  Sure life is hard, if life was easy and if everything was given to us, then we would never learn anything, now would we? So suck it up and deal with life. 

Book

I am thinking of writing a book about my life and what is was lke gowing up with NF.  I have a title in mind- I have NF but it does not have me.. what do you think?  I think is sounds kinda cool- I am hoping to get started on it soon- maybe over Thanksgiving vaca- I do not know if I should write it out first or just go with the gusto and type it out.  I am going to keep a notebook with me at all times so if I think of anything to write, I can write it down in my book.  I have so many notebooks and journals, and books to read- I am obsessed with all of them.  I love books, notebooks, and journals.  I am picky about journals and notebooks, for one they need to be college ruled and the also have to have the spiral thingee so i get just flip it over and write. 

Sometimes

There are times when I feel pretty and then there are those times that I feel ugly.  Some days are better than others.  I still get self conscious when I talk to people that do not know that I have NF or that I am blind in my left eye, and I always wonder "what are they thinking? Are the thinking how come this girl's left eye is weird or drifty".. and so many other thoughts.  Then I sometimes will think, maybe they do not notice.  There have been times when I have told people about my condition and my eye and they simply say that they did not even notice. 
What I love about my job is working with children.  It seems children are the only ones that do not judge you, that you are perfect in their eyes and you have no flaws.  I  have some "bumps" on my arms and neck that the kids see and they say.. "Oh no Miss Jacki has a boo-boo.." and they kiss it and ask me if it is all better.  It is so hard to hold back tears of happines when they do that. I tell them that of course my boo-boo is better.  Sometimes they ask if I want ice for my boo-boo or a band-aid.. that is so heart warming that they care that much- and they are only TWO years old- I love my kids to death and they mean the world to me.  I am blessed that God has put them in my life- so therefore I have something to smile about everyday.

Can't Sleep

I am hardly ever up this late anymore- i just can't sleep tonight.  I hate it when I can't sleep. My husband is all nice and snug in bed with the blankies and snoring away, and here I am at 1am on my blog- it is all good though.

It is the way it is

Having NF is scary becuase you never know when a tumor will come and where it will be.  For me, I panic everytime I get an "ache" that lasts for a while- I always assume that it is a tumor, and I am afarid to call the doctor, so I just hope that the "ache" will go away. 

Wilson Phillips - Hold On

One of my kiddies

So on Friday I was at work and I always wear my necklace that my husband gave me- it has three little diamonds in it- i think it is the journey necklace.  Anyway one my two year olds said, "Miss Jacki those diamonds are so pretty", he then proceeded to put the necklace down my shirt and he pulled it a little, and some of my "bumpies" were shown. When he saw those he said, "WOW Miss Jacki you have TONS of diamonds". It was so cute. 

October 23, 2010

I think I am the first one to post anything on my blog- LOL.  This is my first time doing a blog and I hope that I am doing it the right way.  There are so many people who are living with NF, both 1 and 2.  It is becoming more aware and not as uncommon.  NFis more heard about these days.  Some people are suffering more than others are and people I think deal with it differently than others.  I feel that God made us this way for a reason.  I know we might think that it is not fair that we are dealing with this, but I always think that it could be worse than what it is. Everyday is a blessing!!