The White Horse Theory (Featuring Prince Charming, and the Worst/Best Thing I Ever Realized)

You know those days where you wake up, and you somehow miraculously look like you gained ten pounds, and your hair is flat, and every positive physical feature you have has decided to take the day off? You don’t have to answer that. Unless you’re Meryl Streep, (in which case, i’m SO sorry for even asking, your majesty, thank you for gracing my blog with your presence,) you know exactly what i’m talking about. The days where you accidentally turn on your selfie-facing camera instead of your regular one and audibly gasp at that swamp creature staring back at you. Nobody is immune to monster-face days. Nobody.  So you’ll all be able to relate to what i’m about to say, auto-immune problems or not. Read on.

The semi- honest among us will admit that we experience monster-face days. The truly honest among us will admit that we have monster-face months. Hell, most of us have had monster-face years. Regardless of the stretch of time, ALL humans (except Meryl,) experience segments of their lives where they feel inadequate, and insecure, and out of control. Whether it was dialing an ex after a particularly lonely viewing of “Titanic,”  or crying in the shower (shut up, you’ve all done it,) or staring in the mirror and actually feeling angry at your reflection, we’ve all tasted a little bit of rock bottom. We’ve all been there.

Now as a general pattern one thing i’ve noticed we ALL do (myself very much included,) is pin our unhappiness, and all of our future happiness, on one external thing. I call it “The White Horse Theory.” We revert to Disney princesses waiting for something to rescue us.  Weight, money, relationships, college acceptance, health, social acceptance…choose your poison.  It’s the waiting game. I can’t feel happy or secure or confident until i get/become *insert goal of choice here.*  I don’t mean to be dramatic, but unfortunately, most people are stuck in this  “waiting game,” till they die.   We promise ourselves that once we lose the weight, we’ll feel all secure, and radiant, and confident. Once we land the promotion, we’ll be validated. Once we find the soul-mate, we’ll feel complete. Once i get *insertname*’s approval, i’ll finally feel like this was all worth something.  Someone, someday, is gonna swoop in and make me complete. Something, somehow, is going to make me feel secure. Whether it be the guy (see my post: Fifty Shades of No Thank You,) the girl, the job, the scale- number. We vow to ourselves that once we hit some external goal, life can REALLY start. But until then, we’ll just keep waiting. And feeling insecure. Quietly making ourselves promises, and then waiting some more. And during the entire waiting process, we feel like sad, lonely hermit crabs who do not want to be seen. Because we’ve convinced ourselves that the reason we feel so incomplete, the reason we feel so insecure, is that we haven’t reached that goal yet. And that goal is our ticket to happily ever after. Inevitably, we get stuck in a downward spiral of self-loathing when we don’t immediately accomplish our goals, and it starts all over again.

CUE THE LUPUS MAGIC.

Now lupus is the epitome of monster-face days. Oh yes. Prednisone makes you sweaty, and your hair gets thinner, and some days your eyes are a weird color. Sometimes you’re super bony-skinny, and sometimes your super swollen, and neither extreme feels cute.  So obviously post diagnoses, i threw myself into this insecurity whirlpool.  “Once i feel healthy, i’ll be myself again. Once my face is less puffy, i’ll feel confident. I’m going to work out, and read studies, and do everything right. One day i’m going to feel like a confident badass again. Until then, i am going to hide in this room so nobody can see me until i have deemed myself flawless enough for the public eye.” So i waited.

and waited.

and waited.

Like an insecure 12 year old standing on the corner of the dance floor cause she didn’t want to be called brace-face.

juuusttttt waited.

and then i realized something. Something that sounds wildly depressing, but was actually the most freeing thing I’ve ever realized. Achieving goals is much less in our control then we think it is. Sometimes you can give it all you got, you can follow every rule, you can push as hard as you can, and you still won’t get what you were fighting for. Pretty bleak, right? But here’s what that (horribly depressing,) realization lead me to…if i waited until i looked/felt how i wanted to to enjoy life, i was surrendering all of this time i could potentially be using to laugh and hike and connect with people. For all i knew, i’d never be un-puffy again. Was i giving up being happy forever?  I realized that my behavioral patterns were akin to that of a high school girl, waiting in my room for the boy to call me so i could feel whole. I was Rapunzel, waiting for prince charming in my ivory tower. I was pinning my entire life on something that i had limited control over. 

It’s stupid to wait until you’re the dress size you love to buy the dress you love. It’s stupid to wait until he calls you beautiful to believe it. It’s stupid to wait until you look like Beyonce to act like Beyonce. You have no idea when OR IF those things are going to happen. We waste so much time hating what we are. This isn’t to say throw in the towel on what you’ve been working towards, goals are really important. It’s just that  what i’ve learned from being the sicky is you don’t control the results.  So i decided that instead of choosing to work towards results, i was going to choose something else. Something harder. I kept the goals, but fighting for them wasn’t so much about actually getting there anymore. It became about learning to enjoy the ride.

You control the journey. I know, journey is a really lame word, but hear me out. Again, this isn’t to say that goals aren’t worth having, they are. Goals are what make us human. But life doesn’t start after you achieve your goals, life is the space in between them. And you can either spend that time waiting, and moping, and torturing yourself because you haven’t hit your target yet, or you can…well…you can be a badass. You can laugh at your failures and let them push you to try again. You can use your weakness to make you relatable.  You can let your frustration give you a voice.  All that time where you’re waiting and hitting yourself in the head for not being perfect? That’s when life is supposed to be happening.  But if we force ourselves to wait until we’ve achieved our goals to start living, to start being confident and loud and OURSELVES, we  cheat ourselves out of so much time. We cheat ourselves out of so much happiness. I am an 18 year old, tired, puffy-eyed  girl going through steroid-withdrawal. I don’t start school again till September, my gym game is way off, and almost all of my friends are in a different country. I don’t look as adorable as i usually do. I can’t do as much. But this part of the ride is as real as the healthy parts are, and damn it, i am going to enjoy it.

Stay Badass,

Leah

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My Story (Featuring a Period Cake, some Kardashians, and a very interesting diagnosis.)

You came back!! I knew you would.

Hey Dolls. So i figured before we get to the goods (ie; the smoothie making, the laughing at my expense, the rambling about life and food and beauty,) i should give you a brief overview of my sitch. This post is to give you some context, for the stories, like a timeline. Only interesting. Usually i make people buy me a drink before we start discussing my super un-cute bodily functions and whatnot, but i suppose given the circumstance this will have to do. This will be one of my lengthier posts, but bear with me. It’s a good one.

In the spring of 2014, i noticed i wasn’t seeing the clock so well. I know this doesn’t sound very exciting, but as you can imagine this escalates quickly. I figured that i might need an eye checkup, so like any other human with other things to think about, i immediately proceeded to not get an eye checkup. The only time i was ever reminded of my mildly burry vision was when i tried to look at the clock, and being a lazy, irresponsible freshman in college, that was like once a week, while i was waiting for Game of Thrones. As long as the pages of People Magazine were clear enough for me to properly analyze Mindy Kaling, and i could see my Iphone, i really didn’t see the problem. I let it slide. Khaleesi and Khal Drogo were about to sail the black sea, and i just didn’t have time to deal with irrelevant issues like obstructed vision. You don’t mess with the mother of dragons. Priorities.

Fast forward a couple of weeks and i notice my face is getting a little swollen. Again, i decided to ignore it. Every morning i just slapped on some Mac Studio Fix concealer and bronzer, and went about my day with an artificially contoured face, a la Kim Kardashian. No problemo. Thinking that maybe it was a freshman fifteen thing, (although the scale wasn’t changing,) i swapped my Skinny Chai Latte for a green tea and my daily jog for a sprint. Life proceeded as usual. Unfortunately, within the  month my vision was almost totally useless. I started experiencing RIDONKULOUS stomach pains, (think like, swallowing a cheese grater,) and a serious case of ugly swollen face. I was too fatigued to think a coherent thought. My usual happy, sunshine personality was replaced by a shell of a girl who i didn’t recognize, (or particularly enjoy the company of.) My gym addiction was replaced with an inability to get my own water, and my sense of humor…was actually still on point. I was basically i blind swollen Tina Fey. Anyway, prior to this, i had been relatively healthy my whole life. Sure, my blood pressure was a bit low and my metabolism a bit slow, but that was it. Nothing major other than a couple of fainting spells after some particularly strenuous situations (once after a root canal, once after a marathon, etc.) The whole thing hit completely out of left field, and the doctors were stumped. Soon, i was reaching the point where i couldn’t leave my bed, cause i was blind as a bat and my joints were positively useless. My blood tests were no bueno, but nothing was adding up. My friends would come visit and could not get over my un-Leah appearance. My eyes faded to a lighter color, and i had a butterfly rash across my nose like a suntan. I was moody and pouty and sweaty and swollen, and it was really….well weird. It was just really weird.

Now understand, my family is basically the Jewish equivalent of the Kardashians. Everyone is in everyone’s business all the time, always, no exceptions. There are no secrets, ever. Not one. Like, before i even decide whether or not i like a guy, both of my sisters (and my sister-in-law,) have instagram/google/facebook stalked him, both of my brothers, (and my brother-in-law,) have decided to hate him, and my parents have memorized his lineage from his neanderthal ancestors till his parents. This phenomena is most easily relayed via what i mentally refer to as the “Period Cake Incident.”  During my first, um, visit from aunt flow, i, (a gawky long limbed hippie 12 year old who liked her guitar more than boys,) came home from school only to find a scarlet red Baskin Robyn’s cake with the words “You’re a women now, PERIOD,” gracefully scrawled across the top in a delicate sans-script cursive. Oh yes. I got a period cake. My entire family, and even some extended family, partook in the period party. Boundaries? No comprendo senior. What is this word you speak? Brother in laws and cousins should get to eat period cake, too.  Totally normal.

So naturally, my older sister was on the case the second the doctor uttered the word “confusing.” That was just not an answer she was going to accept. There is no confusing, there is only obsessing until you know EXACTLY what’s wrong with your blind swollen little sister. Just to clarify, i was being observed by top notch physicians of all disciplines, analyzed from every plausible angle. Nobody had answers. Neurologists, neuro-ophthalmologists, Gastros, you name it, all stared at me like a bunch of color blind kids with a Rubics cube. It was unnerving, to put it lightly. As anyone with any kind of medical drama can attest to, there is no sentence more annoying then “it’s probably just viral.” After weeks of the psychological hell of not knowing why my body was quitting on me, it took my sister (she is not a doctor,) approximately 14 seconds and a tiny conversation with Siri to confidently diagnose me with Celiac. Sure enough, a few blood tests and biopsies later, (another amazing story for another post,) I have an official diagnosis. Hard core, full on, dysfunctional intestine celiac. Sexy, right? Nothing says “meow,” like leaky gut syndrome. Please, boys, don’t all swarm at once.

Desperate to feel better, i became a gluten-phobic whole foods freak. I cut out all gluten, all processed foods, dairy, and anything that had ever been in a factory. I did Yoga to detox my blood every day. Within days my vision was back, my skin was glowing, and my mood was perfect.  My metabolism was fast. Like, realllly fast. Think two soccer mom’s fighting simultaneously spotting the last copy of 50 Shades at Barnes and Noble fast. Everything worked again. I got back to my usual routine, both athletically and academically, and attacked school and the gym full force. I thought it was over.

Unfortunately, i was knew to the world of autoimmunity. Just like the general mercurial nature of these things, a week or so later i was back in bed, with immobile joints and the worst vision yet. But my stomach was better.

In may, (my birthday is also for another post, but a fantastic story that involves my amazing mom dragging my sick, gnarled body 4 hours to NYC to go hear Idina Menzel. Because “birthdays do not pause for illness.” ) it came up that i might have this relatively rare disease called lupus, but the odds were tiny. Ten minutes with a specialist, and the mystery was solved. On June 1st, I was diagnosed with SLE (lupus,) and fibromyalgia.

I spent the next month gathering what information i could on the disease, clinging to the hope that i’d be able to go to Israel on my gap year as planned. After putting me on a ridiculously high dose of prednisone (I hate you, demon drug. DIE. I WILL NEVER FORGIVE YOU, YOU DECEPTIVE LITTLE PILL OF MASKED EVIL, but more on that later,) and plaquinil, i was told i could go if i wanted to, as long as i was sure to be on top of my blood work and maintain my stringent diet and rigorous workout (once again, that’s a whooooole post in it of itself. That was absolutely crazypants.)

So that’s the timeline, dolls. Three months of nervous, jittery ignorance, to the point where my diagnosis hit my ear like a song. Ignorance is not bliss, it’s hell. Each of those phases had experiences that will be written about in other posts, each was it’s own deep, crazy, roller coaster. But now you have an overview. and the knowledge that i got a period cake.

stay badass,

Leah

Ps. Just to reiterate, these posts are for those who suffer from autoimmune disoders and those who do not.Most of what i write applies to all you lovely sparklemice, just in different ways.  For some of you, it’s advice, and for others, it should read like a memoir, or a view into a lifestyle that’s not your own. Smoothie recipies, nutrition advice, beauty, health, and fitness tips…one blog fits all ladies and gents. Xo. Stay tuned.

How to be a Badass

Warning: This is not the fault in our stars. This blog is an honest account of the brutal, gross, hilarious, unexpected realities of being “the sick kid.” While i love me some John Green as much as the next girl, I am done with the neatly wrapped, sepia toned, 2 hours -till -happily – ever -after- Hollywood presentation. This is the real version, where hand tremors ruin your selfies and your eyeliner, and nobody’s kissing in the rain, and you don’t look like Shailene Woodley. My diagnoses was six months ago, and Ansel Elgort is nowhere to be found. I’m calling BULL.

Welcome, dolls. My name is Leah, and last June i was diagnosed with a slew of super sexy, life-altering diseases. Now, lest you become all starry-eyed and excited for the personal blog of Hazel Grace, be forewarned. Unlike in the books and movies about the sick kids, there’s nothing particularly Nicholas Sparks- esque about my life. I am not an angst riddled, metal loving, misunderstood outcast with a touching story and a broken heart. I don’t pout, or ponder the abyss of death, or write “why me,” poetry.  On the contrary. I am a normal, yoga obsessed, smoothie drinking, drama free 18 year old girl from Maryland. Repeat: I DO NOT DIG THE DRAMA. I like anthropology and running. There is no tragically ill boyfriend/love of my life. (Actually, i might be the single-est person alive. My Augustus Waters/ Edward Cullen/ Christian Grey is Netflix.) There is no tale of stoic bravery, where i battle my Lupus/Fibromyalgia/Pots/Celiac and arise victorious.  I am not a brooding, introspective genius who nobody understands. I am a happy, open, zen teenager with the minor detail of my dearly misinformed, charmingly useless immune system. No filter, no soundtrack, no montage scene where i fall deeply in love with a fellow sicky. 

Now, what there WILL be is as follows. This is the story of the parts the camera pans away for. This is the part that nobody talks about, and it extends farrr past the good, the bad, and the ugly. L-U-P-U-S, five little letters that essentially mean my immune system can’t differentiate between healthy tissue and foreign invaders. In other words, if my immune system gets triggered by anything, the bod goes all sons of anarchy on me, just full on attacks itself (more on that later.) Now there are many different reasons, if i may say so myself, to read this blog. It just depends on who you are. For those of you who don’t suffer from any autoimmune diseases, maybe you’ll get a laugh, (not maybe, you will, i’m hilarious,) or a firsthand view into a lifestyle that’s not your own. Maybe you’ll just get to read relate-able stories from a brutally honest, compellingly witty 18 year old stuck in her bedroom with a laptop.  You’ll definitely get smoothie recipes and eating tips, and advice on how to look gorgeous when you’re too tired (or lazy,) to move. Maybe, just maybe, it’ll raise a little awareness for these faceless, cureless, diseases that could use a little attention. Now, for those of you stuck chugging along with me on the autoimmune crazy train from hell, this blog serves a difference purpose. I want you to see that you’re not alone. Those nights in your tank top on the bathroom floor, those flirting sessions ruined by steroid induced brain fog, the (countless,) pics you can’t Instagram because of puffy eyes, i get that it feels like you’re the only one who could possibly have such random garbage to deal with. I know you think you’re the only one (under the age of 80,) who has to worry about if you’re joints are gonna be working tomorrow morning. I thought the same thing. Surprise! You’re not. There’s a whole bunch of us, and we all hate swollen prednisone face too!! The effects of these disorders, (or diseases, whichev,) are physical, emotional, spiritual, social, and psychological, and we ALL feel them. This isn’t “wah us, we’re so sick,” pity party. This is a gathering of badasses who are going to laugh about the things we can’t control.  This is my chronicle (CHRONICle. hehehe. Medical pun,) of living with this unpredictable insanity. My goal here is to relate to the people who suffer and can’t explain it, and to explain it to the people who don’t suffer.

I want this blog to show the entire spectrum. Should you decide to come on this Journey with me, (okay gag, can’t believe i couldn’t think of a less cliche way to say that, cringe,) i should warn you the path changes. Alot. The stories will be sad sometimes, and funny sometimes, and it all gets very deep and introspective. Even medical and boring, on occasion. But the one thing i promise not to change, is that they will remain consistently honest. More then just the physical nonsense, this blog will cover friendships, and gap years (I studied abroad,) and guys, and being forced into responsibility wayyy to young. It will cover the how to’s, and how to not’s, and the golden rules of being an autoimmune badass (or just a regular badass. Whichever.) Its about the truth, the whole truth, and nothing but the truth. Hashtag no filter, dolls. Pretty is for the weak 😉

Always,

Leah

SIDENOTE:

Lupus, also known as “the cruel mystery,” is an autoimmune disorder in which the immune system cant differentiate between healthy tissue and foreign invaders. There is no known cure. Symptoms, prognosis, and all that fun stuff will be included in a later post (like, um, all of them.)

Fibromyalgia involves hypersensitive pain receptors, cognitive fog, fatigue, and muscular problems. There is no known cure.

Pots is an acronym for a longer name i refuse to commit to memory, but it basically means low blood pressure and quick heartbeat.

Celiac is  fancy term for “i’m terrible at eating, especially gluten.” No cure, but treatment currently consists of dietary restriction.

While that’s just a teeny, one dimensional outline of those suckers, it gives you a reference point for the rest of my posts. Cheers, dolls 😉 stay badass.