Welcome to my other blog. I started this one shortly after graduating from the C.I.A, to differentiate between my food and my other thoughts. It's a cozy little place with frequent weird but real, honest thoughts.

There's really not much more to say here, as anything mildly interesting is either down below or written in my Armadillo section above.
Hope you can relate to some of my thoughts and situations, even if they tend to be strange sometimes

Wednesday, July 16, 2014

Externs and delayed words


Over the years I started and stopped a number of blog posts that involved an open letter to my previous-previous job. Most of them were angry, but they were also true. But this isn't that. It's an apology.
For years I've felt very badly over the externs with whom I worked a few years ago.

Girls, I wanted to say I am very, very sorry. As a C.I.A grad I knew it was my duty to look out for you. I was supposed to take care of you and whatever problems arose. And I didn't. This is particularly awful of me because my externship was horrific. Probably just about as awful as yours probably was.

I should have taken better care of you. I only once told Her off that day one of you worked a 24 hour shift. I had just returned to work after an approximetly 1 hour nap and 5 minute shower at about 2 am on Thanksgiving morning. I saw one of you STILL there and was shocked, angry and disgusted. Not at you, of course, but at her. And him. I was furious.

She was bitching how "mommy" had to call and I curtly and not so kindly told her that you had worked a 24 hour shift and how that was really pretty shitty. I wish I told her more. I wish I theatened to call the school, to have them shut down her as an extern site. But I didn't have the balls. When I quit December 31st, 2009,  I went to the school within two weeks to personally tell the extern office about them. I hope they are no longer a site but I am truly afraid they still are.

I'm so sorry. You girls were all so talented, smart, strong and very kind to a weird girl like me. You were tough and stuck it out. I hope you are all in a much better place because you deserve to be in a place where you love what you do about 80% of the time (let's be honest, work can suck sometimes) and you make enough money.  Having you girls around made the place less lonely. Not just less lonely, but less Alone, you know? It wasn't just Me against the Irrational People.

I didn't want to post anything about this particular job before now because I was worried a boss, or an associate or someone who could get me into major trouble/fired would read this, and think I was unprofessional.

But the thing is, I like my current job. I'm terribly shy and nervous all the time because I'm so used to working with Crazy/Unfit/Burnt-Out bosses that when I come across a kind one like I have now, it seriously throws me.
 I can adapt to crazy. I can adapt to unfit. Adapting to nice and Someone Who Seems to Get How to Treat People, is harder.  Yes, I am so neurotic and socially awkward that when people are nice to me, I was weary and suspicious. It's not you, it's me.

So I don't care if the former-former aforementioned bosses "Her" and "Him" read this. "Him" barely can read past a 4th grade level and "Her" is so busy belittling everyone else that she doesn't have time to read this. It really doesn't matter to me.  Also, I don't think I have any evidence left of my old jobs anywhere on either blogs, so unless you know my personal work history you don't know who I mean.

And I would never actually do this to any other job I have ever or will ever work. I liked my old job, and I like my new one even better.  I like my co-workers, I like the quiet moments and the busy moments. I have almost mastered the perfect cappuccino, which is kind of rad. I'm pretty happy, but definitely glad to be there. I wouldn't make marshmallows and cookies for people I didn't like.

This old-old job is just a special case.

Tuesday, July 15, 2014

Chop Suey, Goulosh.

 At work today no less than three customers told me I "looked tired" and only ONE of them was a regular (and therefore is allowed to say such things to me) I wanted to tell them "No, that's just my face." My face does look a little different from other people. I don't know if it's my gigantic pores or the fact that I couldn't sleep laying down til I was about two years old. (Side bar: When I was born the space between my nose and throat wasn't fully formed, so I had to have surgery to correct it; which involved them breaking that space.) Or the fact that I have NF. And almost every person I know has the same kind of eye area. We have the same darkish circles, with teeny, tiny bubbly-esqe bumps. My eyes look slightly sunken in.
No amount of make-up, sleep, or expensive eye cream can correct it. It makes me terribly unphotogenic. And yeah, it makes me look tired.
 And explaining why that is to a stranger or even someone I work with or regulars is difficult, awkward and totally unnecessary

~~~~~~~
I also resent when older customers tease me about thinking I feel "old". Yes, I am almost 29, and yes, I feel old.
You kind of tend to feel old when you've had more MRIs by age 12 than most people do in their entire life time. You feel old when you've been poked and prodded and have had your naked to semi-naked body looked at more times than a steak, pork, or hooker.
You feel old when you know NF is going to kill you. You feel old when you know it's going to get worse, not better. You feel old when you worry how it will turn on your future kids. You just....feel worn out.

So no, I don't feel old because "the 90's was 20 years ago" or "I know how to use a card catalog".  I sincerely did not think I'd make it this far. I didn't think I'd be turning 29 with a husband. Seriously thinking about getting pregnant. Thinking about our dream house and  having a career. My doctors as a child sure as hell didn't think I'd be capable of getting this far.

Combine that with former terrible bosses, middle-of-the-night shifts, school struggles, betrayed friendships and a bullied childhood and you get me. Worn out, weary of others and tired of everything.

A customer today commented "Yeah, because you're so old!" when I said "I used to be optimistic". I did used to be optimistic! I used to be more naive than I am now. More sunny and cheerful.  If you were me on my externship and experienced the nastiness, bullying, deep loneliness, betrayal, heartbreak and sheer cruelty of that time in my life, you might understand why I feel bitter, old and tired. 

~~~~~~~~~~~

I never really gave much thought to religion growing up.
It's sort of funny how religion never actually occurred to me until it was shoved into my face and down my throat at catholic girls' school. Then I realized. Catholics are crazy.

My mom's family was raised Catholic. So finding out Catholics were actually this level of crazy surprised me. I never made the connection til I hit high school and met the Crazy People.
 My mom's family is big and loud and kind and big hearted. Gatherings have no less than 5 pounds of food per person. They are all good, hard working, excellent people and I am very lucky to be apart of the family.
When I was a kid, I thought all families were this big and this loud. I thought all Thanksgivings contained 40 people. When a classmate only had one uncle or no uncles I thought how weird and quiet that must be. No cousins to hang out and torture!? I still can't imagine that.  I was actually a little disappointed when I found out Matt only had two siblings. I wanted my kids to have what I had. A dozen uncles, loud holidays and lots of food. But then I realized they'd have a dozen great Great-Uncles and great Great- Aunts and a few dozen cousins besides. (great cousins? Second cousins? How does that work?) So I think my kids will be okay. They'll be loved like crazy by about a hundred people.  It has to be said again that I really do feel lucky to have such a large web of family. It is a blessing to have so many people around.


~~~~~~
Back to the Crazy Catholics. 
So I was surprised when I met the Crazy Catholics. At least, the snobby, rich, entitled girls with their Kate Spade bags, Coach Wallets and other fancy things a teenager probably shouldn't own. 

I never really fit in during high school. The small group of girls I was friends with were kind and un-crazy. At least not "catholic" The S.H.A class of '04 had a reunion at some point this summer and I saw that only about a dozen showed up. If I were to be brutally honest, I didn't really like about 80% of the girls I went to school with. The "smart" kids actually treated me like I was retarded. Like it was my fault the SCHOOL put me in A.P ANATOMY only because it "fit my schedule". But one of the girls Michelle (one of about 5 in my class) treated everyone like they were retarded anyway. And I hate to use that word. I know the meaning it has and how terrible a word it is. But she did. She literally did.  She treated me like I had a mental disability. And I loathed her for it. Rich bitch. I think if you didn't own a designer bag you were beneath my classes' notice.

If I didn't see 78% of these girls again, I'd be okay with it. Sorry, but I think most people in high school feel that way, I just have the guts to say it. Also I really don't think any of them actually care or even remember who the hell I am.


~~~~~~
On a final note. Being married is awesome.
I don't have much more to say about it, because that's all that needs to be said. It is awesome to have a companion, if you will. It's great to be glad to see someone when they come home. To make weekend plans to watch six episodes of Doctor Who and make pizza.
And also, I thought this post was a bummer so I wanted to leave it on an awesome note.

Thursday, June 19, 2014

Why I hate the summer

I was probably the very last generation to not have...what's that called? Central Air.

In the summer, sometime around the crying shame of August, we'd beg and plead with our father to PLEASE put the A/C in the living room! We'd pin up sheets to keep the cool air in and my day would be split between running around barefoot and sandy at the beach and trying to stay in the living room as long as humanly possible. I swear to you it was at least 20 degrees cooler in there.

But that isn't really what this is about. As a kid, I loved the 10 hour days at the beach. Running around in my swimsuit with whatever tribe of kids happened to be there. Breaking only for the coveted can of soda or shared french fries. We'd have a picnic table in the grove with two or more coolers in the shade, filled with fruit, treats, snacks and dinner. I haven't a clue how we entertained ourselves ALL DAY. Especially when it got hot as hell and the tide was DEAD low.  We'd get there sometime in the late morning and not leave til after dark. I'd be filthy and full of good food. It was a good life, and I am very grateful to have been lucky enough for my parents to shlep us to the beach with ALL THAT STUFF. On a nearly daily basis. 
It was the ideal kid summer. Days and nights at the beach, rainy days doing family activities, Nicktoons in the afternoons on the rare day off from the beach, s'mores for dessert....Playing with the fire at the grills. General kid shenanigans.

Anyway. As a kid, other than hot nights, thunderstorms, sheer terror of bees and the school district telling me what to read, it was a great time. I never really wanted those summer days to end.

But now as I am more aware of NF and the strange symptoms that accompany it, I really dread the summer. My senses, already on over drive, are on hyper drive in the heat. Weird smells of slowly rotting garbage assault my senses at the bottom of the stairs. There were times that as a child, I could -actually- smell the milk going bad in the fridge. Swear to God.  Matt and I either need to take garbage out on a regular basis or keep the stuff prone to rot (fruit, veggies, dairy, etc) in a separate grocery bag in the fridge.  It's awful. I can smell things Matt can't smell and it makes me CRAZY and agitated. There's no real way around it. There are days I do want to snort vinegar, in hopes it may kill off some senses and make me more normal.

Another thing -is- the humidity.  It revs up my peripheral neuropathy. I itch frequently and all over. Which leaves marks because I'm over heated. Which makes me look I was attacked by a cat. 

The heat and humidity is unbearable. Other than the itching, I get drowsy, foggy and terribly irritable.

When you're a kid, you relish the long summer days. It doesn't get dark until sometime around 8:30. You stay up way, way, way past your normal bed time and toast marshmallows or go to the movies or catch fireflies. You catch up on sit com reruns or Nick At Night.

But as someone who spent the majority of her last four or five summers going to bed at 7 pm to get up at 3 am, you generally loathe the summer. Loathe it. You can hardly have time to go have supper at the beach. And sure. Go ahead and say it "But Jenn! It's summer! You should enjoy it and not sleep as much!" That's easy for someone to say who works a 9-5 job and gets to leave early in the summer on Fridays. I never slept well as a child. I still don't sleep well. Period. So, yeah, if I need to go to bed early so I can function the next day, so be it. It sucks and it's unfair, but that's life.  And honestly? I'm not -exactly- a social person. Summer concerts, Shakespeare on the Sound and other "Fun" summer events just make me nervous. Well, not so much "nervous" as "slightly uneasy and agitated". I like family gatherings and small gatherings of friends.

It's not you, large gathering of slightly drunk strangers. It's me.








Thursday, May 29, 2014

Teeny Tiny Babies

I get the baby itch at work sometimes. A lot of parents come in with their kids in tow. Some a few weeks old, others about 3. The ones under a year grin and wave if you even glance their way. The 3 year olds do excited little jigs when they get to have a cookie. The two year olds run and explore and rearrange the chips....and say "Hi!!" to everyone. The week olds bleat like baby goats. The newborns generally sleep and mew. They all make my heart simultaneously contract and melt.  If these wee little babies were related to me in any way, I'd pick them up and never put them down. Is that normal? Don't answer that. These parents must think I am insane; because I always give the kids a little extra attention, and I always make a tiny fuss over the "regular" kids who I call "my buddies".

Sometimes in the morning, my first dense, foggy thought in the morning is worrying if Matt will die that day. I know it's insane, irrational and slightly obsessive.  But I just expect these things to happen to me. I think how I'd go on without him. But I wouldn't ever be able to. So I worry and think the worst situation, so when it happens, I wont be surprised. And I don't just mean any time soon, I mean in general. We all die someday. The thought of that, of any one I love or am close to dying is devastating to me. Loosing parents or siblings or any family member at any age is devastating and sometimes I don't think I have it in me to get through it.

Which makes me wonder what would happen when I have a child.  I think that love would rip me apart. And I'm not even talking about something bad happening to them. I mean just loving them would break me.
I know I'm going to be the soft parent. My wee one will be reading in bed and beg for 5 more minutes. I'd give in without a second thought; because the joy of reading late into the night and falling asleep reading is a feeling I want my kid to have. She'd ask to share an ice cream cone (vanilla soft serve, sprinkles, of course) and we'd be sitting on a bench sharing a cone immediately, even if we were eating dinner soon.

Of course, I say all this now. Ask me again when I have a kid and he's running around the house, covered in chocolate pudding, glitter and Cheerios. And screaming. Or when he's doing that in public. Or when it's a sullen annoying teenager. But you don't really think of those moments when a 6 month old waves at you with big bright eyes. Or when a little tiny baby yawns. We must be hard wired to love teeny, tiny things.  I wont even allow myself to think much about real problems my kid may have. NF, other disorders or disabilities, food allergies, terrible accidents. It's just too much.

I know I don't want kids right this second. I don't know when I want kids. It's one of those "sooner or later" things. One of those "I can't wait!!" but "I totally can wait" sort of things. I know a lot of people my age already know they do not want kids period. Which works for them, you know? It's like, I don't like avacados, but I'm not gonna spend my time making you not enjoy them.

I'm not sure how to end this post, so here is a photo of a kid.


Thursday, May 1, 2014

I don't care anymore. -OR- Trendy Disorders

I'm getting to a point in my life where I'm getting a bit tired of stupid stuff.

For one, I am very rather sick of hearing about Autism and breast cancer. I am aware of the spectrum and more aware of my chest, thanks.

I'm also sick of people in general from my past, but that's another post.


I'm sick of being so angry at the world. If you are reading this, and I highly doubt you are (you are probably cruising other sites about more trendy disorders. Yep. I said it. "Trendy Disorders" Maybe I'll call this post that.

I've posted much too much about Neurofibromatosis and not enough.  I'm sick of repeating myself to people who either have it themselves or have children who have it. These people are Experts (From this point on called NFperts) They don't need to be "Aware" of anything. They live it and breathe it.

So how about you? Ugh. I'm so sick to death of hearing myself type about Neurofibromatosis over. And over. And Over. And over again. I'm sick of defending it, I'm sick of explaining it. I'm sick of telling others how goddamn sick I am of hearing about the Trendiest Disorder in The World: Austism. We GET IT.

I hate very much to be rude or insensitive, but I get it. I GET it sucks. I GET it's hard. I GET WE NEED A """CURE"""".   But for the love of the tiny baby Jesus, what about NF? NF is at least twice as bad as Autism. NF can actually kill you. It will kill me. Which is alright, I guess. I mean, God help me, I'm working hard on myself to get healthier to make my odds better. But who are any of us fooling? If you have NF you know you will die from it.

In a way, it's mildly reassuring. No surprises. But in a way, it sucks.

But I guess I'm getting ahead of myself.....

I sort of want to post facts about NF, but that's a little boring. But people are getting lazier and lazier in this time of technology, so what the hell.  This is taken from The Children's Tumor Foundation Page. A terrific resource for anyone giving half a damn about NF.


NF has been classified into three distinct types; NF1, NF2 and schwannomatosis. They are caused by different genes, located on different chromosomes.
  
·NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born.
  
·NF2 is a rarer type, occurring in 1:25,000 people worldwide.
  
·While today there is no consensus, studies indicate that schwannomatosis occurs in 1:40,000 people.
  
·The Neurofibromatoses are genetically-determined disorders which affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined.
  
·All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.
  
·Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.
  
·NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
  
·Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities.
  
·NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.
  
·The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness and severe balance problems.
  
·NF2 brings on increased risk of other types of nervous system tumors as well.
  
·NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.
  
·Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).
  
·NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that John Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.       


I don't know why I'm so bent out of shape about this. My NF is mild. But the thing is, I know people who have it so much worse than me. Friend's children who have gone through a year or more of chemo. Suffer chronic pain, risk loosing their sight and/or their hearing.

How can I put this to impact this disorder upon you?

Imagine yourself in a doctor's exam room.  You are naked but for a flimsy paper gown.

The Doctor walks in and asks you what the trouble is.

"Well Doc, I've been having headaches, back aches and nerve pain. I don't sleep well. I found out I have high blood pressure, and I believe I felt a lump on the back of my neck."

The doctor looks at your chart. And he chuckles.

"Well" He says "I can't find a thing wrong with you. Maybe you should loosen that pony tail and watch what you eat."

You try to explain to him this "thing" you have. "Neurofibromatosis" You say, looking at your knees.

He brushes it off
"No, you aren't deformed" He laughs. 

You find yourself getting angry. Angry at this man who is supposed to help and support you. And at least have HEARD of this disorder. At least enough to know the basics.......


My former Neuroligical Doctor treated me like that.  I haven't been to any sort of neurological doctor since then. I am still so angry about it. For God's sake, my ob/gyn doctor seemed to know more about NF than her. Disgusting.

Can you understand now? Maybe even a little bit? This is the most common neurological disorder and yet no one, not even most doctors, have seemed to know about it. We have become our own NFperts. We have become advocates for ourselves, our children, for each other. We have to.
We have to stand up for ourselves and each other because no one else will.  We support each other and love each other like family.
Which is rather cozy, until someone messes with us.

Anyway.......Where am I going with this? I just want awareness. I want some compassion and understanding. I want you to look into our stories and our lives and see the struggle and the thriving we do. Despite your ignorance, despite your apathy.

I hope this month you learn a little about Neurofibromatosis. It's not like it's going to kill you.

Monday, March 24, 2014

The Big 3-0

So I'm going to be 30.....in about a year and a half. Jeeze Lousie. You know how people go through a "30 Crisis" type thing where they have to do something grandiose for their birthday? Learn a new language, run a marathon, walk the great wall of China?

I honest to God didn't think of doing anything. Until now.

I dusted off the old Wii Balence Board and popped in Wii Fit Plus. Remember Wii Fit Plus? I haven't been on in 779 days. I knew I had to bite the bullet, face the music and step on the board to get weighed in.....

20 FREAKING POUNDS!

Twenty pounds in 2.10 years, people!!!! TWENTY!!!! Oy. Okay, so when I gained 12 pounds between October and December I could deal. But now that I see I gained 20 pounds in two years is just this side of frightening.

So in the Spirit of Stupid 30 Adventures, I'm going to try to "Loose 30 by 30."

More later. Or not. 

Friday, February 21, 2014

Pink Freckles

So, I was going to do a post tonight about Neurofibromatosis. I really was. I started to look back at old posts and I realized I haven't anything new to say. Other than one thing.....

I am almost 30. My NF has been mild. Never really paid attention to it. But I'm almost 30. This is a progressive disorder. I am starting to notice things.
Like how I'm getting a new "pink freckle"  (apparently called benign melanocytic lesions, in my case a "classic spitz")  One of at least four. Which is worrisome, but normal with NF. But still something to look out for; since it could be just another pink freckle or melanoma. 

 I can say nothing new than what I've said now. But I still want to empathize how Neurofibromatosis is serious. It's progressive. We've come a very long way over the decades in trying to find treatments. And by that I mean in another decade or two we might actually have something we can use. We can cope. But that's about it.

Please, just allow that to sink in. Just for a moment. You can treat cancer. You can treat diabetes. You cannot treat this. It's going to progress and once it does, it will spread and take over and you cannot stop it. 

Anyway. That being said, here's a post I am pretty proud of. Read it if you please. Or don't. It wont make NF go away. But maybe awareness will make a difference.


Sunday, May 1, 2011

Secrets; Neurofibromatosis Awareness Month

 What kind of secrets do you hide? An embarrassing story? A difficult past? 
Some secrets are fun; like what you're getting your fiance for his birthday. Some can be like burdens.. Thinking about the freedom of giving them all away.
For years and years my secret was my Neurofibromatosis. It was never something people needed to know about me. Classified information. A need-to-know basis. 
To doctors, I had a neurological disorder (most of them had no understanding of it anyway). But to everyone else I was just a weird outcast.  They didn't know the splotchy spots on my skin were cafe au lait spots, so normal with nf. They didn't get that I had poor fine motor skills, giving me terrible hand writing and even worse knife skills. That my speech impediments and difficulty with speaking is something I hardly can control.
Neurofibromatosis (NF) was my secret. My own. I never felt ready to share it with anyone. The few friends I had didn't know, though I'm sure they knew I was some sort of freak. 
But I've gotten to the point in my life where I need to let it stop being a secret. To own it. To be able to explain myself to people. I don't care if people know, but at the same time, I do care. Letting people in can be dangerous. Letting them in on such a big part of you? Should everyone be privy to such information? To trust someone that much with something so personal can only just end up hurting you in the end. So why the hell bother, right?
What would they think of me? A disorder no one has heard of. That not even doctors can understand or even explain. A disorder I can barely begin to explain to people who don't have it.
Those who do have it and families understand. It's a common neurological disorder that has so many variances and so many degrees of mildness and extreme. Some people may never experience the symptoms another faces every day. One person's massive tumor is another person's nerve pain or itching. Someone's learning disability is another person's curvy spine. One person's bumps is another person's vision problems.
It's aggravating and frustrating. My NF community ranges from large tumors, to constant pain to debilitating learning disabilities. Every one of us is entirely different but completely the same.
It's funny. I feel like I belong and don't belong in my NF community. I'm the weird one, even in my own disorder. Ha. I'm the freak in my own community of odd symptoms. Typical. 
My case is mild in most ways but normal in others. The pain I feel is fast and infrequent lighting bolts of nerve pain. My blurry vision is triggered by extreme light is more inconvenient than a problem. My curved spine, weird bones and over-active senses. I have small bumps on my head, shoulders and back but aren't something I'm overly worried about. I have dark circles under my eyes; something I've noticed in many of my NF friends. It's funny how such strange things you don't even notice are common with my NF friends. It's a little comforting, knowing you aren't the only weird one. 
It's the whole freak part. My issues you can't really see. Not physical. I'm insecure and self-conscience from years of bad motor skills, learning disabilities and A.D.D and failing, failing, failing.Years of bad school experience, both from the class room and from torture from students so bad it kept me up for days of sleepless nights. I went to an entire different school district to escape.
 It's made me untrusting of others; wanting to reject them before they reject me. I want so much to be helpful and friendly, empathetic, but never wanting to invest too much into friendship in case I'm rejected. I'd like to have friends, but am so used to not having them I can't identify what it would be like. 
You start to feel like people are being nice to humor you. Being nice to the weird one. The stupid one. You become suspicious and defensive. All the time.
My emotions are extreme and uncontrollable and explosive at times. I get frustrated and discouraged so easily. And you want to express all that, but you talk so fast and have so much trouble verbally articulating. Here, I see my words and can tell you exactly how it is. But talk to me to my face, and my verbal skills go down by 70%, and I find myself over explaining. Being unintentionally defensive.All of it stemming from complications that NF has brought into my life. It's a struggle to not let it own me. To break through the insecurities and difficulties NF brings and enjoy a productive and happy life, instead of always having that level of mistrust in the back of my head. "Don't let them know too much about you. It's only going to screw you over in the end". So, for years it's been a hidden aspect.
NF is my secret. It's the reason I am the way I am. It's not something I can cure or even manage. If I'm going to get a tumor, I'm going to get a tumor. If  it decides to grow into massive disfigurements, and they are about 75% likely to be un-removable, that's just what's going to happen. No amount of wishing, hoping, exercise or healthy eating is going to change that. Nothing. Can I stress that enough? Nothing.  It's a progressive disorder. I'd rather not know when it's going to hit me. Getting pregnant can exasperate the disorder. There's better things to worry about in life than worrying about something that might not even happen.
That's just what we have to deal with. At this moment in time, I say "If it's going to happen I'm going to deal with it when it happens." but if and when it actually does happen, I'm not sure how I'd feel. I have so many friends who either have NF themselves or have children with it. We all kind of feel the same way. Dealing with doctors, MRIs, symptoms. Wanting answers and solutions but rarely never finding any. 
NF is incredible. You can't control it, or treat it, or manage it. You have to mange life with it with  pain pills and coping. It can either challenge you to accept it and embrace life, or to deny its existence.While I haven't "denied" it, I've kept quiet about it. If you didn't know about this before this post, don't take it personal.
May is NF Awareness Month. I'm kicking it off with this very personal post. Essentially giving away my secret; albeit it's mentioned on both my blogs. It's something so deeply personal. It has made me into this different person. Different. Not less
I hope those of you who don't know anyone with NF take some time this month to research it. But no amount of research can make the impact that talking to those with it can do. We can tell you of our spots. The tumors. The frustration. The feeling of hope and hopelessness. We're the only ones who can control our future, and our children's future where we may have a shot at finding a way to deal with this progressive, spastic, most common neurological disorder.  
We have NF. But NF does not have us.