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

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.

Tuesday, February 4, 2014

This post is Probably about you. -or- Letting go and making peace. -Or- I might start a lot of shit with this post.

"Make peace with the past, so it wont disturb your present"

I've been thinking about this post for a few weeks now. Letting it knock around my brain and maybe turn into something worthwhile.

I wondered how this post would be recieved. But I really don't care. I'm pretty sure the only person who reads this is me and Matthew. So what the hell?


This really isn't meant to be a bitter post. Or a resentful or hateful one. Just honest....Or a calling out, if you will.  I don't care if the intended people read this and I don't care if you like it.

It would be an understatement to say that middle school was "difficult" for me. It was 3 years of indescribable pain, loneliness and hopelessness. It was every bad made-for-tv-movie about bullying.

If you went to middle school with me, make no mistake. This is about you. We were in girl scouts together, school plays together, and later, Confirmation Class....But I'll get to that later.

I don't even know how it began. One spring we were graduating from the 5th grade. The next fall, by best friend moved away and I knew...I just knew deep down that my life was over. I cried and cried when she left because I knew I'd be alone.
But I was more than alone. I was alone, tortured and ignored.

What did I ever do to these kids? These kids were everything I was not. Pretty, popular, athletic, smart. Was that it? Was my hair too short and my teeth too crooked? Was it my stutter? Why did those things matter then and did not matter in grade school?
But what did I ever do to you?
What did I ever do to not only be ignored and made fun of so badly I was on sleeping pills in the 6th grade? Where, even on them, I couldn't sleep for days.
To be taunted and stalked and harassed on such a daily basis that I'd hide in the resource room at lunch, because no one would let me sit with them.
To be under so much stress that at 12 years old my blood pressure got so high I couldn't see straight. 
The internet wasn't really a common thing back then, but if it was you'd probably all anonymously torture me there, too.

But what did I do to have my stuff stolen? My hair pulled so much that I cut it off, rather than try to look normal. To cry every day. To be terrified to walk home, because I worried that since you were all so bold to be cruel to me in school, that you'd be worse outside the halls.

I don't mean this to be bitter or angry. Just trying to be honest. I know this was roughly 17 years ago. I get that. But I want to make peace with all of this. I'm just so tired. So exhausted, you know? From being terrified of people. To have anxiety about social events.  I'm tired of feeling this pain and hurt from something that happened so long ago. I want to let it all go. And to do that, I need to tell you all my past. Which kinda sucks; opening it all up again. Dredging up 17 years of anexity and repressed memories of these people I'm now facebook friends with.
Well, to be honest, I sort of dislike you. I hate you for being in girl scouts with me, and then just......standing there, laughing with friends, saying scathing remarks about my hair, my teeth, my clothes, my spots, my stutter. Look, I get it that I wasn't the coolest person, but I guess I owe you thanks for pointing it out to me....Everyday.

Man. I remember my lowest point. I had this friend. This sweet girl who had the coolest hair. Tiny braids. I suppose she was catching a lot of shit for being friends with me. One day before class I sat down next to her and greeted her cheerfully.

She did not look up from her paper or her book or whatever she was doing. But she spat "I don't want to be friends with you anymore! Take the HINT!" My whole world, my whole universe shattered like glass before my eyes. My head spun. I was stunned and confused and hurt. I was utterly heartbroken. I felt abandoned. My very last friend in the world. I sputtered a meek "Okay" before taking a seat further in the back. Keeping my head down and my eyes averted, trying so hard not to attract attention and trying not to cry. I didn't understand.....but I did, you know? I was the biggest loser in our grade. Possibly our school. Truly the biggest loser. Why tarnish herself? The whitest white girl in the school hanging out with a pretty, smart, cool girl like her? It's funny. Thinking about it now, how clearly I remember the pain. Even though we made up during Nature's Classroom, it still hurts like hell.  Why do these things still hurt almost two decades later?  I was terrified of our relationship after that. So afraid to put a foot wrong.

I'm not saying I'm not without sin either. Angry, hurt, constantly humiliated, I did what any angry-hurt-humilated girl would do. I found a common target. Another few kids they were mean to also. Middle school is survival of the fittest.  There was this one girl. We were best friends almost a decade earlier, in the early, early 1990's.  But we grew up in different school districts and suddenly I see her in Middle school.  I was over come with terror. We were best friends in Special Ed. Me because I had NF, and no one knew what to do with me. She for what I can only guess was severe learning disabilities. I was absolutely terrified. Terrified she'd seek me out and tell everyone we were BFFs...from Special Ed. Everyone knew she was in the extra help classes. And I was just so awful to her. First chance I had I pulled her aside and demanded she never tell ANYONE how we knew each other. I know you wont probably read this, but I know the last time we saw each other I told you how sorry I was.  I'm just so sorry. I was cruel and hateful and scared and a mess. I took out my pain from others out on you and it was a shitty thing for me to do. I am just so ashamed and so sorry.
But there is another, more terrible story.  There was a boy. And we shared a mutual hatred for each other. Why we hated each other so much I have no idea. But we loathed each other. He was nasty to me and I was nasty back. He was the only person I did not take shit from. I wanted nothing more than to see him expelled.  God, I was awful to him. Everyone was. People called him terrible names. But  I didn't hate him because he "Acted gay" or "Was gay" or anything related to that. Everyone else did, though. And I just added to the hate. For no reason. I had no reason to hate him, only that he hated me. And in Middle School, that is usually enough.
I'm so sorry I was cruel to you, too. It wasn't because you were gay, or black, or any other shallow reason. I was just alone and hurt. I was trying to deflect bullying away from me. It is so excuse. It is a cowardly one and a shameful one. But I was so sorry then, and I am so sorry now. I was the worst kind of bully and I am just so ashamed of it.

All of you have been friends since Kindergarten. I had to go to a different school district to get away from you. All of you.  You are still friends. I will never have that. And yeah, if we're being honest, I do sort of resent you for it.

The only thing that kept me going in middle school and into high school was The Culinary Institute of America. I found out its existence in the 5th grade and made it my life goal to go there. I knew college was a paradise of oddballs and acceptance and friendship. Where it was okay to be a little weird.  I'd be with  peers who loved to bake and cook and learn about food as much as I did. It kept me going, it really did. When things got rough I'd close my eyes and picture myself at school, with a boyfriend who cooks. With friends at lunch. Learning how to make chocolates and pastries. It was my sanity and my peace.

I am internally grateful I did not have to go to school with you people. But at the same time I was annoyed I was sent to a Catholic school. Worse still, I had to go to confirmation class in the 10th grade. I was furious that I had to go to Catholic school with nuns who hated me. I was furious I was forced into Confirmation Class. When I protested, my faith wasn't even up for discussion. I was so angry. Forced into a religion I didn't know if I wanted to be apart of.
I had deep anxiety seeing three of the kids I used to go to school with. I hoped we were all a little older. A little nicer. The guys weren't outwardly mean to me, but they weren't exactly civil either.
My faith was never more shaken and my relationship to God was never more broken. Throughout Confirmation Class and High school I was confused and angry. Furious I had no choice in how or if I had a religion.
There's this line in the book Cut me Loose that seems to fit my feelings perfectly: "I think you can't really love God if you haven't turned your back on Him first"

It's so true and fitting. It took years to get me back to that place. But that isn't what this is about.

But while we're on the subject of high school.....The bullying stopped for the most part. Girls were still mean and catty to eachother in general. It was an all girl's school. That stuff was gonna happen. But there was this girl who I realized wasn't great when it was too late. It ruined my high school potential for friends. My freshman year, this girl and I did something awful. We online bullied a girl. I knew it was bad and I wasn't for it. I was in a new school and I really wanted to try and make friends and start fresh. But we did it anyway. God help me, we did it. Of course it was all over school. Girls hated me. And rightfully so. I think I've spent the time since then overcome with guilt. I'm so sorry and she knows how sorry I am. I want to spend the rest of my life making up for it.


I just want with this post to let go. To give it all up and just move on. I don't want this anymore. I'm just so damn tired. Tired of the fear of friends, tired of social anxiety. I feel like I've been carrying this for so long. I don't want to hate anymore. This wont make me like you more, or hate you less. I just want to let go of this blob of distrust and the burden of bullying. It sticks with you. It stays and festers. It never heals. It never scars. It's always an open wound. Always in the back of your mind. Never wanting to get too close or be yourself because you are a freak show. And if 100 students hated you and taunted and harassed you, who's to say they are wrong?

I'm putting this out there, because I'm done. I'm almost 30. I'm married. I own my car and have a job I really like with people who are so nice it actually makes me nervous sometimes.  I'm done with this part of my life. I need to let it go of my past so I can have a normal present and a fullfilling future.  I'm tired of my past. I'm tired of hating others and tired of hating myself for my wrongdoings. I'm tired of dwelling on my mistakes and the mistakes of others. Tired of wondering why. I just want to be normal. Close to normal as I can.


Be kind to each other. There's so much hate and pain already. Why add to it?

Wednesday, January 1, 2014

Simply Living

You know what's kinda weird? Realizing you aren't very ambitious.

I hate to play the NF card again, but when you grow up struggling with everything from holding a pencil to speaking to math skills to basic social interaction, you'll take what you can get. I'm so used to struggling and having a difficult time that when things are "Easy" I think I'm doing it wrong.

My idea of a good day in the three years of middle school was going through unnoticed, unbullied, unscathed. When my last and only friend abandoned me to fend for myself in the constant blood thirsty battle of tween dome, I was alone and crushed. I was glad to not say a word all day, to pass through the halls ignored, find a quiet classroom to eat lunch, because not a soul would let you sit at their table. It was better than every one, every single person leering at you, baiting you, taunting you, pulling your hair, staring at you, talking about you.

In the 5th grade, I found out about the Culinary Institute of America. And, even better, they had a baking program. I was ready to go now. But even then, I had no idea what I wanted to do once I got there. I was ten. I had eight years to figure it out. I boasted excitedly that I knew exactly where I wanted to go to college. I'm sure my older siblings held an annoyance that I picked my college destination .
And yet, when I got there, I only knew what I did not want to do. Fancy things, production cakes, things that required good hand skills. I loved school, I was exposed to so much food and techiniques and I am forever grateful for my time there. Met my husband, which was pretty unexpected.

But I'm not the kind of person to set up shop, own a business and be in the spotlight. No, I'm just genuinely happy working, keeping busy and making a decent living

I just don't care. I don't like late nights out, expensive shit I don't really need, or bling or anything else people equate with "success". Growing up, I never really thought I'd do much with my life. I was so painfully socially awkward, and struggled so hard with basic learning skills. I just wanted to get through the day, the week, the year. All the hard moments of life that would lead me to my better one. My real life. This life. A life with a job, a husband, a car. It's not glamorous, or exciting or big.

Maybe my priorities shifted after we got married. But I honestly never pictured anything for my future.
I was so used to living quietly I didn't  don't want those things. I don't know what it's like to have friends since kindergarten, and I deeply resent those girls in the very same classes I was in who do. I don't know what it's like to have friends at all. I really don't know if I could have friends now; social interaction makes me so uneasy I don't know if I could deal with it. Even wacky situations and misunderstandings on tv sitcoms make me anxious. No joke. 

Anyway......I just want simple things. A wee bit of travel, a wee bit of excess. Ambition for me is meeting my very first niece for her 1st birthday. It's maybe going back to Disneyworld before we have kids. It's paying off student loans and car loans and losing that extra 10 pounds.  I want to buy my husband the most expensive Lego set I possibly can.

My life may not be as big as yours. I may not make as much money, or travel, or make Hipster Foodie pretentious meals. I may not visit  Farmer's Markets, or go to New York for plays. I may not have an expensive car. I don't own my own business nor have much intention to.

But my life is full and rich. I have a husband I love who loves me in spite of my weirdness. I have family I love. I enjoy my job. I enjoy that I can save my money now so I can pay for the things in life I'd like. I'm happy and less stressed out. Being at peace and living well is sometimes the most ambitious thing to hope for.

So who's to say who has the better life?



Monday, November 18, 2013

Tis the Season......

Before Halloween we're already seeing ads for the lowest priced Gifts For This Holiday Season. But to tell you the truth, I don't need an ipad. I don't want a kindle, or anything designer, or a smart phone. I don't NEED stuff. I'm not a stuff person. I already have a lot of stuff.

The other day, at Trader Joes in Darien, I saw a homeless family by the exit. It was uncomfortable and haunting and sad and utterly heartbreaking. By the time I left, they were gone, which made me sadder. Who am I to spend money on dinner out, on a new sweater I don't really need, or a 6 pack of beer, when there are people out there who really need things? Little kids without food or coats. Who am I, to go to a nicer restaurant when there are people in this very city, with nothing? Seeing them was literally enough to make me want to boycott Christmas....The gift part...and focus on the love, the message and the real meaning.
And you know what? It doesn't take much at all to give these people a hand. Donating to the food bank, coats, clothes, time, a little money.
I really don't need excess in my life. A smartphone or an iPad  or something similarly techy is kinda nifty, sure. But do I want one? Nah. Not particularly. I like practical. I'm in a position in my life right now where I'm making a little extra money. But that little bit is making an impact on our lives. It's nice Matt and I can go out for dinner (like the Diner, or the very loved Sierra Grille, where you can get a filling and delicious dinner). But I can also donate to Cup of Joe For a Joe; one of my favorite Military charities. I can buy food for the food bank or donate actual money to the Salvation Army or to the Red Cross. In light of the disaster in the Philippians, we really need to re-evaluate our priorities. $30 for a Furby or $10 to the Red Cross?

I'm not posting this to make you feel guilty.......I'm just asking, wouldn't you want to help others? If Matt and I decided against gift giving and donate that money somewhere really worth while, I think we'd both be really happy and grateful. Sure, we'd still exchange stockings full of candy,but Christmas would hold so much more meaning for us. I'm just in a better place right now, and I can actually do a little better in the world. "You can't change the world, but you can make a dent."- Death to Smootchy  and..... "The only person you are destined to become is the person you decide to be."--Ralph Waldo Emerson
 Why can't we decide to be better people?

I'm very grateful to discover a sort of spirituality with my husband. Where we can have a discussion about the Bible and our faith. I went to an All Girls Catholic High School..... as a girl who went to a  congregational church. I was NOT raised catholic. We actually believed all are welcome. And in those four years, I wasn't exactly on great terms with God.  I was confused and annoyed. I was annoyed at their cult-like behavior of Mass (no offense, Catholics, but through my eyes, these nuns were insane). I was angry at the nuns' actions and words, their distaste for me and so many other girls. I hated the Religion Classes where EVERYTHING was wrong. Anything other than being a Scared Catholic was WRONG. Homosexuality, abortion and divorce were terrible, hellish, sinful, unforgivable things. I hated them for their lies, because I truly believed in a God that probably wouldn't condone something you did, but would probably scold you and love you anyway. God is not going to hate you for being gay. God wont hate you for having an abortion. God wont hate you for getting a divorce. I really believe God does not hate. I sort of found my way back when I met Matt. Because the circumstances under which we met were nothing but fate. I still can't believe my good fortune.

Anyway, there's so much extravagance in Christmas now.   I love that my mother in law sends us homemade candy at Christmas.

Do you know how many commercials I've seen for Black Friday Sales and Thanksgiving sales while writing this? In the hour I've sat here, 2 out of every 4 commercials were Black Friday Sales related. It's sad and I really don't want to fall for it anymore. Forget the 3 AM Black Friday sales to buy that Play Station 4 or latest Tablet. Trust me, your 4 year old doesn't need it.

Wednesday, October 9, 2013

Breast Cancer Awareness Month...Just kidding, it's a birthday/NF post.

So I've gained a little weight since starting my new job.
Oh. Right. I got a new job(!). It's actually really been awesome.

I changed jobs very suddenly in late August. I still can't believe I had the balls to jump ship and start a new job in a new town with new people and new experiences.

But if I have to be honest, the ship; or at least my mental ship, was sinking quickly.  I knew I did NOT have another school year in me at my former job. We were right in town, a brief walk from the many schools.

Kids tore up the town, spreading rudeness and general chaos everywhere. Not just "Oh, they're just kids!" behavor.  I mean jumping off the roofs, laying in the street, jumping on tables outside, starting fights, littering, silly string, mouthing off to business owners terror. These kids were, and excuse my language: complete SHITS. I'd call them worse, but I'm in such a better place now I don't need to swear like I used to.

And I just didn't have it in me. I was tired. I felt old. I was just so worn down. I went on a different form of anti-depressants to try and shake out of this fog. I was cranky and unmotivated. I realized I was only staying for my two bosses and my regulars. I realized I needed to get out.

Anyway, I'm in a much better place now. I really like those I work with. The music is just...insanely good. The place is covered with albums, artwork and photos of the Greats. The people who made music great.

I've been there for a wee bit over a month. I'm slowly trying a bit of everything so I can recommend things. But in reality I've been eating a lot. And as I near my 28th birthday, I realized I have very few, if any years left where I can not "quite" finish a whole can of pringles. Where I can nibble on 6 Mac 'n' Cheese bites and then try the pulled pork. Cookies, pies, hearty dinners at home are going to start to take their toll.

But I'm really not the kind of girl that does "moderation" very well (re:whole can of Pringles). Some things, like greasy fried foods I can moderate. Cookies and candy, not so much. Three tootsie rolls turns into 6, which turns into 9....But I can justify this by saying this isn't an every day thing so....I try to pretend it isn't an issue....but it totally is.
I'm also getting at that age where I need to take my health and fitness seriously.
Justifying this is easy: Eat in moderation, enjoy the bad food you love (in moderation)and go to the gym. Problem solved. Right!? I hope.

Another year older is still so strange to me. In my posts about turning 25 I was worried about when NF is going to get me. And with every year older I think about it more and more. What's going to happen?
As I've said in previous posts, this is what is going to probably kill me. It wont be old age. It's going to be this. Some sort of complication. I don't know when, I don't know how, but it will. I think I've always known this. One of those things like "It's gonna happen sooner or later" Because....well...it is. My NF is so mild, it's going to progress sooner or later. I haven't really allowed the thought to really fully absorb into my mind. I make it stop at the resigned acknowledgement. I don't think past how I'll feel when it does happen. When a tumor does grow, when the pain kicks in, if bumps start to appear.

I can't allow myself to think that far. This is why I get so bent out of shape when there's so much attention given to things like Breast Cancer (any cancer, really) and Autism and diabetes. I'm certainly not saying they aren't important. They are very important. So are many other things that no one knows about.
But Neurofibromatosis is just something I'm only now allowing my mind to fully think about. What's going to happen? I never had to think about it like this before. It was so "far away". As a kid, I rarely gave it a thought unless it was a particularly challenging day. MRIs, doctor prodding, failing tests and difficultly fitting in usually made me think about what I had, and my spots, but my mind couldn't get around The Future.
But here it is. I'm almost 30. I'm married. I'm thinking about getting pregnant in a few years. My adulthood is here. NF is something I really need to put thought into. 
My sister is running the NYC Marathon for the Children's Tumor Foundation  and I'm really excited and rooting for her! She's working really hard to train and it's so wonderful that she's running it for a foundation. It's truly a great thing she is doing for the foundation I've known about my whole life. So much family and friends have donated to her run. I know it's going to be fantastic.

But to be frank, it made me slightly uncomfortable at first. As you all well know, NF was NEVER something I'd EVER openly discuss. Even now, it's hard and weird.  I'm a very private person when it comes to NF. I'm not embarrassed about it, it was just something I didn't talk about. I didn't want to make an excuse out of it.  I remember reading the blurb she wrote and thinking "I'm pretty sure eating what I wanted for breakfast is an even trade for all the stuff I dealt with". I never thought about it from my siblings perspective..... I was the youngest and was a little more than a handful.  They probably thought I was a little babied and the tiniest bit spoiled. But in MY 6 year old perspective,sitting naked on a table while 5 or 6 doctors poked and prodded and looked at you was way worse.  The thought of it makes me blush to this day. It's hard to admit that even happened. It's truly no wonder why I hated discussing it as a child and even now. It just brings back memories of humiliation and discomfort. 

Unfortunately, I'm much older now and have to be an adult. I need to face this and take care of myself. I'm under Matt's health insurance now and I really should get an MRI. But I really, really, really hated my Neurodoc. And by really hate, I mean Loathe. But I need to step up and find someone who will actually listen this time. Who doesn't respond (with a laugh)"Well maybe your pony tail is too tight" when I tell her about headaches. Stupid bitch.

ANYWAY. I try not to worry too much anyway. Because there's really very little I can do. Other than taking care of my body, there's no way to prevent the progression of NF. I can't eat vegan, or lift weights, or run ten miles a day. I just gotta take care of myself and hope for the best. 
There are hundreds of thousand of people who deal with these unpreventable things every day. Much worse than my own problems. So who am I to worry and whine, really? 


This is kind of another downer post. So here's a kitten dressed like Link. 











Friday, July 5, 2013

Food For Thought

Food is the worst kind of compulsion to have. You can't escape it. You can live without good wine (but why?), you can live without caffeine and other drugs.
It's weird to think of a time, thousands of years ago, when food was just fuel. There wasn't a choice. You ate what was there and that was it. This is true throughout all of history, but for those ancestral monkeys or whatever the latest Christian Ultra conservative is denying about evolution, there was pretty much assorted berries, roots and whatever speared animal they could find. Huh. Can you imagine? No steamed broccoli, or pulled pork? Jeeze.

Food is something that completely commandeers the majority of my thoughts. It's a fixation. I'm always thinking about the next meal. If I'm just sitting down to dinner, I'm mentally going over anything sweet for dessert, even if it's just butterscotch chips. I don't diet, and we have plenty of food in the house at all times. It goes beyond that. It's an obsession of love.
 I'm barely three bites into dinner or finishing cooking dinner when I'll ask Matt "What should we have for dinner tomorrow!?" eager for his input on utilizing the freezer. I justify it to myself that I like to plan ahead, and know what's coming next.
I always know what's in the freezer. I have a constant inventory in my head of the assorted inexpensive cuts of meat. At the ready to be called into duty of being slow cooked into chicken with cranberries over rice, or beef stir fry.
I text Matt my dinner suggestion for the day. He rarely responds. It's fine with me, it's more involving him in the process of planning that I love. Like a real family.  He's easy to please. I enjoy the thought of planning, cooking a meal and watching him genuinely happy to hear and smell it cooking, and then sit and eat it with gusto.
 Tonight I once again was reminded of something my mother used to say  when we were growing up or preparing meals "I don't care if it's peanut butter and jelly, as long a I don't have to cook.". Walking up the stairs I hear the click of the oven preheating and find that dinner is in the oven. It's not what we planned on eating, and on top of that it's the same thing I had for lunch. But I was hot, sticky and tired. I was just so damn happy to be eating something I didn't care what it was.

It's kinda strange. I was a picky eater growing up. Food was always a constant, showing love or good intentions or joy. Any emotion, really. Nothing made a day better than hearing the chicken cutlets shallow frying. Some kids love the sound of a carnival. I loved the popping of the oil.
I guess I'm still a little picky. I love to eat, but I'm rather unadventurous. I like the things I like, and it takes a lot to go outside my comfort zone. It took me years and a few weeks at the C.I.A to discover the Wonderful World of Broccoli. And damn, broccoli, where've you been all my life!? It took longer for me to meet Matt and have him open up his tastes to me. Duck? Rabbit? Sure......uh, once a year?

With our tight food budget, it's all I can do. Dream about food. The pork tenderloin on a grill, The produce. Oh, the produce! With summer, the displays are crammed with assorted berries, letting off an intoxicating, almost indecent with its sweet aromatics. I dream of strawberries with just a little bit of sugar. Peaches churned into ice cream. It leaches into my dreams, making the flavor of everything stronger and more torturing. Don't get me wrong, I've pulled some seriously delicious meals. Thrift does me well, and I almost always succeed in the flavor department. If we had a bit more money to spend, I doubt I'd use it on food, since we do pretty well on our own. I love a good deal and if you know where to look at the grocery store, you can find some pretty great things.

Anyway, I guess what I'm trying to say is, this obsession makes me crazy sometimes. Like when your gym is next door to a Mcdonalds. And the smell of McNuggets and french fries cooking makes you so insane you resist the urge to RUN to your car and drive FAR AWAY until the craving gets out of control. Even though I may be a poser with my chary eating habits, I still obsess and long to cook the next meal, throw together the next rice pudding, or make the next jam. I feel lucky to have married someone who enjoys eating (most of) the things I make.