Wait, you weren’t invited?

That must have been why I didn’t see you there. Not that too many people were there. Or anyone for that matter. It was actually just a party for one- THE Pity Party of 2016.

I would say that it was better than the Pity Party of 2015 and definitely better than the 2014 Party of Pity. Not quite as good as the one back in 2004, but I’m not sure any of them can beat that banger.

I would even say that I’m not sure if this year’s fiesta has come to an end. It’s kind of like when you are a kid and your birthday manifests itself into your birthmonth. Granted, birthdays are much more rousing than lupus and also contain a considerable amount less self-loathing.

Pity-parties are boring. Stale. Monotonous. Lonely. And I’ve been trying to end the soiree. But I want you to know that having a disease can feel a bit like quicksand in that the more you struggle, the more quickly you become in engulfed in the weight surrounding you. And if you ever are trapped in quicksand, check whether or not you are being weighed down by heavy items. If you are, release them.

Disease can make you miss yourself and ask questions like, where did she go? They can make you forget that you have accomplishments. That you are a fighter. That you have a sense of humor. They can make you forget that you are deeply loved.

Have you ever woken up after an ongoing sinus infection with a clear nose? You probably sat back and thought to yourself – nose, I will never take you for granted again. I love breathing and I will never forget this beautiful moment of nose clarity.

Years ago I started this blog as a reminder to myself to value both the grandeur and simplicity of life. The moment I realized how fortunate I was for my health and that I had the ability to challenge myself mentally, physically, and emotionally.

I hope you are never so unfortunate that you find yourself stuck in quicksand, but if you are take this advice:  if you simply relax, the sinking will cease.

 

 

My Second Love

A few days ago my friends and I ordered a pizza. They had a long drive home so I won the leftover pie. I am on day three of pizza.

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Just turn the chicks head into a slice because I am becoming pizza.

Usually I have some self control when it comes to pizza. I fake blot my slice[s] to get the “best part off.” I don’t know why people love the grease, but they do. And usually the grease grosses me out, but the past three days have come and gone with zero blots. So here I am, in love with pizza.

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Zero. slices. given.

I just wanted to say hi and tell you this:


Woohoo!

Time to be realistic?


My heart is smiling. And it has been for over one month. I’ve been meaning to stop by and say hello. Miss you, blog. I’ll be back around soon!

Curiosity Never Killed Anything

Whoever said humans are born evil never actually met a baby. Unless it was me, they did call me the demon fetus. What I can tell you is that the purest form of happiness comes directly from babies- and it doesn’t matter that they haven’t yet acquired language fully, their expressions and excitement for life are cross cultural. I truly believe we can see our connectedness as humans rather than our differences through country or culture when we look into the innocent eyes of a young child. In the life of a child two things are certain and universal: laughter and a curiosity for life. Somewhere along the line we lose these two beautiful things, but I would like to believe that many of us long for them.

This year I spent a lot of time thinking about the question: When do we lose our passion for the world? The joy, exuberance, and thrill of the little things becomes lost in mundane tasks and chores of daily life. This week I got to spend a few days with my beautiful, 15 month old niece, Ayla. And let me tell you something, that child appreciates life to the fullest. Or as much as any baby with two legs and a penchant to run can have.

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I am willing to lose followers by stating that she is by far the best and most intelligent child. In the world. And she’s so stinking cute too. But that’s just a perk. At 15 months, she took her little legs and exhausted herself as she ran from exhibit to exhibit at the Museum of Natural History. The excitement and wonder that we all wish we could maintain is alive in this child.

As much as I love seeing babies be babies, I want a piece of that excitement for life cake. So, in my endless effort to tap into my inner child, my friend Jess and I had the pleasure to see Fuerza Bruta, a performance show, in the city (New Yorkers call manhattan the city… Because it’s the only city in the world.) I’m not even sure how to describe this show other than to see it helps bring back the wow factor that kids still have. The show takes place all around you- above your head, on the floor, and with the audience. It’s unbelievable. In one portion of the show, a pool comes down from the ceiling and a performance takes place over your head in the water.

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The ceiling gradually moved closer to all of us as people reached out for the chance to touch the hand of one of the girls from the other side of the glass. Magical, ethereal, and at times a cross between a fantasy and a nightmare, this show had it all.

As the performance came to an end, a portion of the room began to pour- seriously, water flowed like rain as people danced underneath, quite literally becoming soaked through their clothing.

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We left the show beaming from ear to ear, like little kids. We never fully lose that wonder.

What makes you feel young?!

Budgeting Life

On a plane ride to Seattle I found myself indulging in the young adult genre. Yes, I dabble in Harry Potter, but I generally do not read young adult books, or novels that my 9th graders love (we have different tastes believe it or not. Exceptions made for Forever 21). But I caved. I bought The Fault in Our Stars. And now I can say I cried sobbed on an airplane. I totally attempted to hide my tears under my hair that I brushed ever so casually in front of my face, while I pretended to look out of the window – hooray for a window seat.

To summarize, in a sans spoilers way, The Fault in our Stars is a very touching (and conversationally unrealistic- teenagers do not speak like this) story about two youths who meet in a cancer support group and subsequently fall in love. And that’s where my summary will stop so you don’t despise me for ruining a possible summer read.

This book would have made Bear Grylls cry, but it really got me thinking. I do not have cancer, I have never undergone chemo, my disease has not put me in the hospital, but… in a similar fashion to our protagonist, lupus has created an emotional blockage for me.

Everything I’m saying from this point forward is not to suggest that everyone with a chronic illness feels this way so I can only speak to my own experiences. Disease had a funny way of making me feel undeserving of love- no one explicitly told me I did not deserve love, but it happened. This is an interesting conundrum as a serial monogamist, but fully tearing down walls has been a struggle. When I love, I love with all of my heart, but I come with endless apologies. Please see: exhibit a: endlessly apologetic for feeling exhausted and exhibit b: I physically can’t. So shut up.

Exhibit A: I’m not falling asleep because I’m bored, I’m falling asleep because I’m fatigued. So shut up.

Energy needs to be budgeted when you have a chronic illness. Choosing to to spend your energy is a task in itself. Food shopping, laundry, cleaning, and other simple tasks can expend so much of this priceless commodity. Prioritizing friendships, relationships, and myself (god forbid) is an effort that can only be truly understood by a person who experiences fatigue.

I was fearful of jeopardizing my relationships by saying no. I also hated the idea of using my “lupus card*”and being viewed as the sick girl. I perceived my inability to juggle it all was a failure rather than my reality. So, I would continuously wear myself into the ground because I cared more to follow than to lead. How can others love you when you struggle to love yourself enough to prioritize your own damn needs?

This took a lot of time to come to terms with- aka, last year. I needed to accept that I had lupus in order to live honestly with it. On the day that I woke up and made a vow with myself that I would prioritize my health I could feel a weight come off of my shoulders. And yes, I do break out the “lupus card.”

Exhibit B: I physically can’t move anymore. I’m serious- my hand could not close into a fist if I wanted it to. So shut up. Or face the wrath of a partially made fist.

Exhibit B falls into the category of physical pain that can accompany lupus. It manifests itself in me like rheumatoid arthritis (severe joint pain and difficulty moving as a result) and ultimate discomfort everywhere. Best way to describe the sensation: imagine your body is one big black and blue. Now poke that black and blue. That’s what I feel when I’m experiencing physical pain.

Let me explain myself like a wild animal- if I show pain it’s a weakness and I don’t want you to know that I’m weak so I’m going to go into hiding until I die or feel better. So far I have crawled out of my den and survived the pain every time. Go me.

What it comes down to is that I have a big sensitive heart for those that I love. I hate seeing them in pain. When they see me in pain, they feel pain, and as a result I feel pain. It’s a sick cycle. For years it was easier to put up an emotional concrete wall and not let people get close enough to me to pity me. They will say they don’t but their eyes tell another story. When people pity me I feel pathetic- I need to get over this. And when I have gotten very sick, I have needed help. Now I’m dependent on others- oh boy. This is the worst stage for me because I love my independence. I have needed help on every level from getting a glass of water to unbuttoning my pants. As a wild animal, I rather die, but as a human I succumb to their love and allow this much needed assistance.

My friends- It’s so easy to trivialize someone’s daily tasks and compare them to your own. I know getting a water is easy and that being tired when you’re a hard worker is a norm. This is why I have grown accustomed to having people struggle to understand SLE lupus and chronic illnesses in general. This is why having a relationship when you have a chronic illness is challenging for both parties involved. The truth is: Illness or no illness, you are fortunate to find a person who genuinely accepts you as you are. And we all deserve that.

I’m lucky to say that I have many relationships (family, friends, boyfriend) in my life that do not judge or question or push or expect and that take me as I am. I’m not sure I will ever come to terms with the fact that this is a truth- I think I may always have trouble accepting this. But like I said, ten years ago I rather go into an isolated space and hide my pain, fears, and disease entirely. Now I’m shouting this shiz from the rooftops. I have lupus. Deal with it… Or shut up.

*lupus card – this is an imaginary card that I pull out when I’m saying no. Used in a sentence… “I can’t to tonight. Don’t make me use the lupus card.”

Saying Goodbye

I left my sneakers in Israel – the sneakers that began this whole journey with me. The sneakers that helped me find the better part of myself.  

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If you have ever heard the phrase “I left my heart in … [fill in the blank]” that’s exactly how I felt, but it just felt right. Call it over dramatic, but these shoes represent a part of my life that I didn’t know was trapped inside of me- so it was clear when I needed to bring a pair of sneakers to Israel these would carry me there. 

When given the initial opportunity to go to Israel as part of my Birthright (basically, being born a Jew) I held off- Selfish, busy, jaded, unconcerned, but mostly 18 and had more important Dave Matthews concerts to see. Somewhere in the back of my mind was fear- Israel has been a place of contention since it’s creation as a nation. So I procrastinated, as I always do, until the last possible moment- months short of my 27th birthday, the time the decide you are too old to get free trips to Israel (I now realize they cut you off because they realize at the ripe age of 27 my ass would quit the Masada after two steps.)

Now I was presented with the chance of a lifetime to experience a country across the world- a country so far, but so close to my heart, and like my sneakers, I hoped it would help me find a piece of myself. A Jew- a Jew that was afraid to tell people that I was Jewish. It was too complicated, too much explaining, and too much hatred. In a world of over 7 billion people Jews account for 13.9 million- to explain in simple terms: 0.2% of the worlds population. I am a minority. A high school memory: walking out to my catholic boyfriends car to find a swastika drawn onto the dust on his window. 26 year old me to care less about the insecurities of 16 year old me, and in many ways I wanted to find pride in my heritage. I was ready to experience Israel as I left two weeks ago- and experience is exactly what I did.

This post is not a post on the history of Israel- that’s what google is for (or click me!). This post is also not a diatribe regarding the current situation – that’s also what google is for, and your own solid research, not what Selena Gomez is posting on Twatter. This post is a reflection on my time spent in Israel. 

I refuse to go into a day by day account because:

a) that’s boring.

b) days blended into days.

And to summarize Israel is impossible, especially given the current circumstances. I cannot write about my 10 days in Israel without discussing to some degree my experience given the current political climate. As the situation in Israel worsened by the day (google if you have zero clue- please) we were told about every bomb shelter- and had to use them on multiple occasions. And when there isn’t a bomb shelter, lay down and cover your head. To use the word anxiety inducing is not enough- as the sirens blare you have roughly one minute to find a shelter. And yes, we did hear the iron dome in action.  

On our last night the siren sounded loudly as we sat retelling moments that stood out for us on the trip. Gradually, families arrived in the shelter with us as they ushered their children in. Mothers rocked their crying children into a state of calm and then danced around the shelter to help them smile. I was reminded of my fortune to never have to live in fear while simultaneously saddened by what I had witnessed- what is this world that we live in? 

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Yet despite the sirens, the rockets and the missiles, Israeli’s continued their day to day lives. And we did too. It reminded me of a post 9/11 New York- New Yorkers could live in fear, or they could live. New Yorkers chose to live because to hide would be to give in.  

To say this is a beautiful country is an understatement- the history, culture, and pride for Israel is palpable when you are there. 

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Every day was a new adventure: Golan Heights, Dead Sea, Red Sea, Mediterranean Sea, Kibbutz, Elat, Hummus, Sabras, chugging massive bottles of water, waterfalls, camel rides, sleeping in the desert, admiring the stars in the desert, dancing in the desert, dancing, Masada, ancient Rome, more hiking, King Herod. Sleep was overrated and not needed. That’s what the bus rides were for.

And when we made it to Jerusalem and to the Western Wall I was overcome by emotion. I felt a history sweep through my bloodstream. As I looked up I noticed a white dove on the wall. I’m seriously considering that they pay that bird because it was so bizarre and perfect. How this tiny white dove never left this perch and simply stared out from the wall memorized me. Call me weird and spiritual- it’s OK, I already know I am. This tiny bird gave me a sense of peace in the madness that we were living in.

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And so I prayed- I prayed for David, I prayed for my family, I prayed for the lives of every person in this region. I prayed that I will always have the ability to find the joy in the little things in life. I prayed and I never pray. 

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I cannot summarize Israel because I could never do it justice. I can summarize with a word of the day:

Mishpocha:  mish-PAW-khuh, -POOKH-uh  , noun;

an entire family network comprising relatives by blood and marriage and sometimes including closefriends; clan.

groupIn Israel we became Mishpocha. And I hope someday this world can find more likeness than differences, but I fear that’s wishful thinking.

As I said goodbye to my dirt covered, worn in, sole [soul] depleted, sneaks, *literally said goodbye out loud* a piece of me felt complete and saddened. I fell in love and I will never be the same.

Reading Material

I haven’t given you too much to read as of late… I’m aware. But I’ve been doing a ton of reading. And news watching. And working. And running. And yoga-ing. And blogging has taken the back seat and maybe it will until July. Until then, I would like to share an article I had the pleasure of coming across (thanks Jess!) and get your thoughts!

20 Habits of Highly Authentic People
Click me to read!

After reading this article I realized two things.
1) I have not been the most authentic person throughout my life
2) I have thankfully become much more authentic in the past year

So I began to analyze what makes me genuine and where could I relate?

Authentic people:

1. They aren’t afraid to express their opinions even though those opinions might be different than the opinions of the majority.

In some ways I have always been true to myself and my identity- at the age of sixteen I was the person to go to if you wanted it straight. I was also the one in class fighting against every opinion that didn’t fit into my understanding of the world. I still find myself defending my beliefs on a day to day basis, go ahead, tell me sexism doesn’t exist. I’ll read you my manifesto.

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6. They allow their friends and people they meet to show their true selves.

Hell yes. The weirder we are, the better. And I love that we can all interpret life in such unique ways. Case in point, one flower, five ways:
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Some measures of authenticity I’m not sure about. Others I’m still striving for:

19. They let go of critical and ill-wishing people, although they don’t hold any bad feelings towards them.

Yep. I hold bad feelings towards people from time to time…

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Does that make me immature? Maybe…

And after reading this article, I was led me to the question- does authenticity come with age? Do you grow into it?!

When did you begin to feel most like your truest self?
What’re your thoughts on this article?

Scraped Knees weren’t that Bad

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“I’m gonna be a ice cream man” – picture courtesy of one my of favorites Humans of New York

This picture takes me back to the days when I promised myself I would become either a very famous singer or a veterinarian. Or when my brother knew he would be an astronaut but I told him he would fly into the sun and burst into flames. Don’t judge- I was a mean child.

This weekend I’m totally embracing my inner child. Over wine.

The Definition of Selfless

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As a self identified feminist, I take so much pride in having a hardworking, do anything for their family, kind of mom.

She’s the kind of person you want to be. What a selfless woman. Too selfless if you ask me. So I’ve created this proposal for you, mom:

This year I want you to live more for yourself. I know I said I’ll start paying my cell phone bill… I’m sending the check. (Stop judging me. Yes I’m 26 and I’ve gotten away with not paying the bill for quite some time) Take all of my cell phone money and promise me you will go on a banging vacation. You might need more than my cell phone money though so don’t feel guilty about spending a little. You know what I’m talking about- like how I used to force you to take your hard earned money and buy yourself a new shirt because if I didn’t make you, you would only buy things for us. When you travel, do me a favor and don’t feel bad that you won’t be able to take the dogs out for a walk. And stop overthinking what Mark and Sean will eat… They are 18 and 22. You taught us well, mom, and even though it’s hard to believe at times, you have created some self sufficient, independent kids.

Sometimes I catch myself becoming just like my mom and it’s not that bad. Like when I’m sitting in a triple leg crossover, or this new hyena like laugh I’ve developed. Or when I scream irrationally. Or with the amount that I love, because we both love a lot. Becoming my mother isn’t that bad at all. It may be what I’ve been aspiring to all along. Plus she ain’t too hard on the eyes.

Happy Mother’s Day mom, and happy Mother’s Day to every other awesome mom out there!

“We should all be feminists”

We teach girls to shrink themselves
To make themselves smaller
We say to girls
“You can have ambition
But not too much
You should aim to be successful
But not too successful
Otherwise you will threaten the man”
Because I am female
I am expected to aspire to marriage
I am expected to make my life choices
Always keeping in mind that
Marriage is the most important
Now marriage can be a source of
Joy and love and mutual support
But why do we teach to aspire to marriage
And we don’t teach boys the same?
We raise girls to each other as competitors
Not for jobs or for accomplishments
Which I think can be a good thing
But for the attention of men
We teach girls that they cannot be sexual beings
In the way that boys are
Feminist: the person who believes in the social
Political, and economic equality of the sexes

-chimamanda ngozi adichie

I love this quote- and that’s an understatement. Ladies, play nice with one another – I recall a time in 8th grade as the new girl in town. At that time, I had the misfortune of being liked by the boy to like (Hey Bri, still love ya!) needless to say, the mutual crush that we developed became problematic when my friend liked him too. I decided to let her know how I felt- Neither of us needs him- girlfrenz before menz. Preach. We agreed and the backstabbery began. She tried to snatch him right up from underneath me! This was my first, but not last, underhanded girl relationship.

It frustrates me to no end that we do this to one another. Girls are girls worst enemies. We judge, we talk, we snicker, we gossip. We are just straight up evil sometimes. Well, today I say no more! Girls, lay down your weapons, and by weapons I’m referring to that stink eye you’ve been giving me all day!

Today I will be surrounded by women in celebration of my dear friend Molly and her husband to be Nate! Hug a girlfriend today- or just be nice. That works too.