Guess who’s back – and she’s not taking any more bull poo.

Hello, sparklemice. My goodness, how i have missed you all terribly. But i promise, my temporary leave of absence was entirely for your sake. As some of you can relate to, i am currently in atrocious steroid withdrawal. The whole nine yards, shaking, mood swings, breakouts, pain…you get it. Had i posted during my last downswing, my blog would have consisted of a string of incoherent swear words, and maybe an occasional cheesy sad Tumblr quote.
But fear not, my loves. So much has changed since our last encounter, and this badass’ journey seems to have a turn for the sparkly-er.  As i write this i am sitting on the quad under a deliciously shady tree at my choice college, watching my group of lovely new friends play ultimate frisbee while we wait for open mic night, where i will be performing (EEK!) My secret music career dreams (PLOT TWIST,) have actually seemed to slide into the realm of possible…for the first time in a loooooong time, i have my voice back. I’m ready to write again. So while my heart is full of regret that the lupus took over for a while there, i am so ridiculously happy to be myself enough again. Which brings me to this post.

Failure. We all, sick or not, have to deal with failure. Whether it’s not landing the promotion,or letting the disease win for a little bit, or not finishing the marathon…we all fail. FAILURE…the big scary pit we are taught to delicately teeter around, looking down at those unfortunate enough to lose their balance. Well i have a secret: the goddess Athena, my current income, and failure all have something in common. They are MYTHICAL. Failure is not a real thing. Totally made up and then accepted into society as some concrete concept and ultimate reality. Which is really quite the tragedy, if you think about it. Following in the human trend, we have created a problem for ourselves where there is none.
We think that when we attempt something, and the outcome isn’t our goal, we have failed. And that’s not our fault, we were taught to believe that just like we were taught to believe we will one day die.  It’s terrifying and inevitable and a part of life.

But this past sh** show has taught me something…or rather coming out the other side of it has.

Failure isn’t a reality, it’s a perception fallacy. An attempt doesn’t end until you’ve succeeded in what you were trying to do, or realized that it wasn’t what you’re meant to be doing. What we perceive as failure is just a part of trying. It’s research on how to do better next time, or research on whether or not what you’re pursuing is right for you. There is no failure, there is only a process. But because people believe in this “failure” bullsh (my personal favorite curse word abbreviation,) they stop mid process, and then hate themselves. And it’s a tragedy. So let’s debunk the myth, yes? When i went radio silent on you for the past few months, i thought i had failed. And i was stuck in my sad little failure bubble of netflix and solitude. But then guess what happened? The tunnel ended. And as the light fell across my sweatpants and sadness- clad body, i realized that every dead end i thought i had hit during that run through the tunnel was actually just a turn. Failure isn’t real, and we don’t have time for lies up in here. Only truth or fairytales 😉

stay badass, my loves. SO glad to be reunited.

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

The Gap Year (Featuring Brain Fog Stifled Flirting, Bambi Eyes, Sexy Katniss, And a Very Hungry Celiac.)

The Gap Year

10 months, 60 girls, one dorm building, and 0 personal space. Like many other Jewish teens, i’d been dreaming about my Israel year for as long as i could remember. In my family’s social circles, it’s basically a right of passage. You finish high school, you spend the summer breaking up with your boyfriend (because you want to “find yourself,”) you pack your lulu lemon leggings in the suitcase that your sister used, and you get on the plane. “This is the year that changes everything,” they tell you. “This is when you get to grow up.” So as you can imagine, despite having only been diagnosed in June, i was lazer-point focused on that September 7th departure date. There was no way in hell i was going to let everyone I know go on their magical eat pray love journey in a beautiful foreign country while i read pamphlets about monthly colon screenings in the waiting room of my Rheumatologist’s office.  I challenged those doctors to keep my away from the country full to the brim of waterfalls and mountains and eligible, cute, 18-21 year old guys that my mother would approve of. Staying home was not an option. As i saw it, it would completely derail my whole life. I was going. End of discussion.

Because of this desperation, i was willing to let the doctors try whatever they wanted to get me there. Doped up on high doses of Prednisone (little did i know…) and a prescription to start on Methotrexate (RAWR,)  upon my arrival, i got the green flag. Despite my swollen eyes, tired brain, and lack of functional intestines, i was standing in that group of overexcited college kids at JFK international airport on September 7th. Now in my previous post, “What They Don’t Tell You But You Need To Know, AKA: The Golden Rules Of Badassing,” I mention a few things that the Doctors failed to warn me about upon my diagnoses. Being the autoimmune newbie that i was, there were some questions i had failed to think of until…well…my arrival.

Questions I probably should have asked PRIOR to leaving, that i instead only asked as the situations arose:

1) Wait, how do doctor appointments work here? What do you MEAN do i have my insurance card? I have insurance???

2) What the HELL am i supposed to be eating? (At the time, my system couldn’t tolerate gluten -even cross contamination- chemicals, preservatives, dairy, or any form of animal protein. That diet is difficult to maintain when you live across from a trader joe’s and have a full kitchen at your disposal. Imagine living in a dorm building, that was located on a horse farm, that happened to be 45 minutes away from the nearest grocery store.) My fellow gap year adventurers were living off chocolate bars and Doritos…andddd i was screwed. oops.

3)  Do i tell people that i’m sick? If i don’t, how do i explain away those days that i have to stay in bed? Or my random puffy face days, when i look like a sad bloated chipmunk? Or those times that i can’t play my guitar cause my fingers don’t bend? What do i tell the doe- eyed megahealthy blonde, who is supposed to be my peer, about my body’s internal functioning drama if she’s never even had a cold? Do people treat the sick kid differently? Holdup, am i the sick kid now? Is that a thing?!

4) Can i party? Will that work? Or like, do people with Lupus not do that? What do i do when everyone’s…well…being freshman in college? Like, do i just go to yoga or something?

All of these little things are second nature to us well seasoned autoimmune badasses, and before making a decision we calculate every little special thing we’ll have to do pertaining to our illness. Well, not newly diagnosed leah. Oh no no no. Newly diagnosed Leah DID NOT THINK THIS THROUGH. She had her glitter turquoise- lined eyes on the prize, and she would not waver. Silly little future badass. Didn’t see it all coming.

*As i’m writing this, i’m eating the most amazing Raw Paleo Brownies EVER that i made in like, ten minutes. Remind me to post the recipe. OhMyGoshSwooooon…*

Anyway instead of gracefully floating into my life the way answers sometimes do, the answers to these particular questions slammed me in the face like a ton of very unwelcome, methotrexate coated bricks. One month in to dorm life, and I had a very rude awakening. Here’s what i discovered, in order, pertaining to the questions i had failed to ask:

1) The answer to question one came from Darla. Ohhhh  Darla. The lady on the phone at my new Rheumatologists office. “Yes, darling you have insurance. You also have  a whoooole policy, dedicated just to the care of your Lupus. HOWEVER, being a grouchy, sadistic, angry insurance lady who you’re never going to meet in person, i’m not going to explain it to you. Oh no. Here in insuranceland, we just throw fancy pants terms at unsuspecting sickies until they break down and end up badgering Siri about tax subsidies with no pants on.”  The terminology swirled around my head like a tornado. Factor in the brain fog, and i didn’t stand a CHANCE at keeping my own medical stuff together. But i was supposed to be a grown up now, and i wasn’t about to call my parents and ask how to book an appointment…so i just made my self look like an idiot repeatedly until eventually someone pitied me and gave me my weekly slot.

2) What will you eat, you digestion- challenged celiac?  You will eat gluten free oats, sparklemouse. 3 times a day. If you eat anything else, you will projectile vomit. And being the big baby you are, you will then cry, because you HATE throwing up. Good luck fueling your workouts, sunshine. Woohooo. Oats.

3) Should i tell the other people in my program that i’m sick? Will that be a stigma? Being the open person i am, it took about 4 seconds (upon someone asking me “what was up with the pharmacy,” in my carry on,) for me to casually say, in the tone that one might admit to ADHD, “Oh, i have lupus.”   By some weird, evil, karmic miracle, all 60 of my fellow travelers decided to tune into my conversation at JUST that moment, and proceeded to bombard me with the largest group of pity-swollen Bambi eyes i have EVER seen. EVER. It was like this was the hunger games, and they all just realized i was definitely dropping first. The odds were not in my favor, and the deemed Katniss of the group (the healthy, annoyingly gorgeous girl with the yoga mat strapped to her side and upper thighs that are so far apart they’re probably INCAPABLE of touching each other,) instantly responded with, “Oh you poor thing. My uncle died from that. Can you like, be here?”    ……..Thank you Katniss. No really, that was helpful. Thanks.

4) Can you party? Later on in your life, partying will be an option. But for now, HELLS TO THE NAW. Take a shot of tequila. See what happens. (the answer was fainting in the bathroom, by the way. One. Shot. Out cold and woke up shaking like a leaf.) Didn’t work? Well why don’t you go check out that awesome music festival at the dead sea? (Oh, um, because you’ll get hit on by a GORGEOUS, toned, tanned soldier, but your brain fog will take over and you’ll end up FORGETTING YOUR CELL PHONE NUMBER WHEN HE ASKS YOU FOR IT. YOUR OWN NUMBER. Anyway after stammering and trying to explain how you forgot your own number, he will see Katniss, and he will be gone with the wind. (* Insert mockingjay whistle/hand signal here.*) Ohhh fine. Well if you can’t drink, or rave (neither of which are really my scene anyway, by the way, i’m more of a red wine, netflix, sweatpants kinda chica, ) why don’t you just go to that really upscale black tie roof party? because if you do, you will sweat through your dress (thanks, prednisone,) lose a clump of hair DURING A FLIRTING SESSION (thanks, methotrexate,) and look like a chipmunk in every. single. selfie. that. you. take. the. whole. night.

After a little bit though, i got my footing. I was loving my classes, i was running six miles a day, i was doing yoga every morning at dawn, and people started coming to ME for advice on adjusting to being in a new country. I felt pretty badass. All was well.

CUE THE METHOTREXATE. *Jaws theme music*

Despite my perceived thriving, my bloodwork wasn’t showing up quite right. So my international doctor, who barely knew my case at all, decided to up my dosage of the metho. Two pills, once a week, he said. You’ll barely feel it, he said. Did anybody else have the HELLACIOUS experience that i did? Theres something about the outside of your body not reflecting how you perceive yourself that can drive you crazy, you know? I didn’t look like the smart, put together person i was trying so hard to be. I looked puffy and swollen, and my metabolism had slowed enough to spark a little weight gain, despite my eating almost nothing. It was really alienating, to see all of my friends pass out at 4 am, wake up at 7, eat dorritos for breakfast and look like beautiful, toned, tan supermodels while i was spending my entire day working on my body’s health, and looked like i wasn’t taking care of myself at all. It made me insecure (NOT an emotion i was previously in tune with, i’m what some might call delusional- confident. a few extra pounds? whatev man. I like this bikini and i’mma wear it allllll day.)It made me jealous. It made me all the things i always loved myself for NOT being. Approximately ten minutes upon swallowing, i was a vomiting, shaking, crying mess. My chemicals were so wacked out that i literally couldn’t listen to music because of how emotional it made me. My stomach was hard as a rock (not like, sexy toned hard. Like dead, bloated goat hard. Not cute, not comfy,) and my previously, thick, caramel main was dwindling faster then you could say “Tresemme.” Also, it made me mean. Like really mean. My poor unsuspecting roommate would cough, only to have me respond with something along the lines of “WHY ARE YOU SO LOUD YOU NARCISSISTIC PSYCHOPATH KEEP IT TOGETHER FOR ONCE IN YOUR SORRY PATHETIC LIFE.”  (It was actually her who ended up sitting me down and telling me to listen to my body, because “these new drugs are eating your personality alive.”) She was right. After calling my Rheumy (crying, actually, and telling him i would stop taking it myself if he didn’t agree to wean me off safely that day,) they began the process of getting me off of the Metho, and slowly but surely i became normal again. And i had another healthy few months.  Thanks to CraneoSacral Therapy and acupuncture, my roller coaster was at an all time high. I felt like Beyonce, i looked like me, and finally, FINALLY, i was thinking like me too. I hadn’t even realized the anxiety and probably depression, in retrospect, i’d been experiencing the whole time.

On top of all that, i really didn’t want to be a burden on anyone. I didn’t want my new friends worrying, or the staff of my school panicking, or anything like that. So i hid it. I wore big sweatshirts (during a little weight-loss spell that had me lookin kinda bony,) and sunglasses (to hide the puff,) and drank green tea all day to trick people into thinking i had food. I lied. I lied SO much. I told everyone i was feeling great, pushed myself to hike when they hiked, told them that the stomach pain was PMS. The highs were high, but the lows were LOW. Certain days i would just hide in my  stuffy dorm room and PRAY that nobody would come looking for me.

So how does the story end, you ask? I’ll tell you, my lovely BAIT (again, badass in training,for those of you who forgot.) During one of my higher highs, (think teaching a daily yoga class and essentially being the school therapist,) i felt a crash coming on. A big one. All of a sudden my mood swung Miley Cyrus style, full on WRECKING BALL. I was throwing up somewhere near 5 times a day (whenever i tried to eat,) and waking up in the middle of the night from uncontrollable twitching. I tried to laugh it off, but my parents could tell from phone calls that something was off. It was soon discovered that i had what my homeopath called “an accumulative overdose,” on the prednisone. I had been on too much for too long, and it was getting dangerous. I needed to start the weaning process ASAP. Unfortunately, that’s not the kind of thing my American doctor was comfortable conducting from overseas. So 6 months in, starving, tired, but very emotionally fulfilled, i booked my ticket back early. It was hard, and i knew i was going to miss those huge Saturday night jam sessions on the beach, but every muscle in my body relaxed the minute i clicked “book ticket.” It was like my immune system knew it was going back to my blender and whole foods, and i felt the adverse effects of the drugs winding down. Its funny how your body sometimes knows what you need better then you do. I feel really satisfied with that time, anyway. I learned a lot about myself, and accomplished what i went there to.

So that’s where i am now, dolls. Still unpacking my suitcases, I’ve just gotten home and am currently in the beginning phases of the coming off the steroids process. Sweating? yes. Crying? yes. Shaking? ohhh yes. But at least i have my easily accessible, bountiful organic produce, my yoga studio, my car, and my American doctor. Commence operation get strong and bendy again. Plus, in my free time, i started this blog and met my currently 37 (and growing,) devout, glittery badasses. And for that, i am uber thankful. *sniffle*  You guys are totally worth the Prednisone drama. A little autoimmune- driven fate, perhaps? 😉

Stay badass & stay tuned,

Leah

What They Don’t Tell You, But You Need To Know (AKA: The Golden Rules of Badassing.)

I call it the moment.

I’m sitting perched on an examining table, looking super fly in my cute little paper hospital gown. The doctor looks at me with that look only doctors can do, that impossible mix of being bored to tears and mildly sympathetic. In a monotonous voice, without so much as a glance from her notepad, she says “i’m so sorry dear, you have lupus. *insert disease of choice here.*” she then pats my arm, glances at the clock, and writes me a little prescription. Once that’s done, she proceeds to automatically give me the rundown in that “i’ve said this speech verbatim ten thousand times before and relaying this information to you is all that’s standing between me and my grilled chicken salad right now” voice. She is monotone, she is rehearsed, and she is macklemore fast. Here’s what they tell you, after your (lupus, in my case,) diagnosis “moment,”:

1) You can live a full, normal spanned life, providing you stay on top of your organ function through bloodwork and medication. Play your cards right.

2) Stay away from anything that will trigger your immune system. sunshine, junkfood, excessive physical contact, garlic…happiness basically.

3) You will have flare ups and ebbs. Flares are when you get sick. Ebbs are when you feel normal. Try to not trigger flare ups.

4) The bathroom is down the hall, you can validate your parking at the front desk okaythankyousomuchbyehaveaniceday.

At the time, this will seem like helpful information. You might even think that what the doctors tell you is all you need to know. My poor, sweet little badass. THIS IS USELESS. What they do not tell you is a far longer, far more important list, and i intend to make it known before the next unsuspecting innocent thinks that garlic or sunshine is going to be the worst of his/her problems.

HERE, my beautiful sparklemice, is a list i compiled of what they SHOULD tell you when you’re diagnosed with an autoimmune disease, the things that you really need to know to survive (as for my immunity-blessed readers, there’s some stuff in here that applies to you, too. read along.)

1) You Are Not Your Disease- This is not a changing point for who you are as a person, and the biggest mistake you can make is becoming your lupus. You are the same person you always were, your body just requires a different regiment for upkeep now. It’s just like learning you’ve been caring for your car wrong. Adjust, regain your balance, and keep driving. FLOOR it. Your biggest obstacle at this point is going to be yourself, and the people who look at you with sad, sad Bambi eyes. Which brings us to point two.

2) Pity Is Not Your Friend- But don’t be afraid to ask for help from people you trust. One of the most debilitating things is being surrounded by people who view you as the sicky. If you don’t pity you, they won’t either. But that doesn’t mean you can go it alone. Find the people who you love and respect enough to be vulnerable with, and vent to them. Choose the people you can trust to not see you any differently. (Of course, dolls, i’m also always here for a good vent sesh. Even an anonymous one, if you’d prefer.  laylay28@gmail.com. Hit me up 🙂

3) KEEP YOUR ZEN- THIS. IS. THE. GOLDEN. RULE. Please, loves, if you take nothing else from this post JUST TAKE THIS. This is the difference between thriving and surviving. Flare- ups are stress triggered, and your mind is your safe space. if you get stressed, you will get sick. There’s no way around it. Control the stress, control the flares. Learn what causes your body’s stress signals to go off and avoid it. For most people the best forms of stress management are consistent exercise, a healthy, clean, balanced diet, and solid sleep. I also sprinkle in Game of Thrones and shopping at Anthropology, but season to taste, darling. People who aren’t cool with you going to sleep at 7 pm when you feel like you need to are also generally a good thing to avoid. And gluten. Gluten is ew. But i’ll get all science-y on that later.

4) Your Friends Are Going To Think You’re Flaky-  People aren’t going to get it, because this is such a specific kind of problem. but there will be a lot of last-minute cancelling of plans, and that’s OKAY. Just because you were fine at 5:00 pm, doesn’t mean you’ll be fine at 5:01 pm. When your body tells you no, listen to it. Your real friends will be understanding and if people give you a hard time about it, that should tell you alot about their character. Those with lower emotional IQ’s and less of a capability to understand others will struggle, but those aren’t the kind of friends you’re going to need for this anyway. Sianora, guys. You have been kicked off my magical party bus. Enjoy the walk home.

5) This isn’t Instagram-  Yeah, so even the prettiest, most Kate Upton-esque supermodels among us aren’t going to be selfie-ready after a flare up. That’s just how it is. Sometimes life does ugly things to your face. Mentally prep for occasional puffy cheeks, tired eyes, swollen joints, weird weight stuff, and maybe even hair loss. It can be emotionally very strenuous, and that’s not gender specific, but learn to laugh it off and you will be soooo much happier for it. Remember, flare ups are stress triggered (See rule three,) so the better you take this, the faster you’ll be back to your fierce Beyonce self.

6) Be Your Own Advocate-  Doctors love order. Doctors love regiment. Therefore, they have a tendency to lump people into categories and behave accordingly. The problem with this method is that bodies are very unique and nobody knows yours quite as well as you do. I made the mistake of trying stuff against my instincts and ended up sick as a dog, alone, in a foreign country (spoiler alert: it’s a great story, on my “gap year,” post that should be up later this week,) cause i was too shy to ask questions. Do your OWN research and listen to how your body reacts to things. Don’t let them blindly lead you down that rickety path made of “general rules.” This isn’t to say made your own medical decisions, everything must be monitored and discussed with your physician. But do enough research to be a part of the decision making process. Understand what’s happening and keep up the best you can.

7) Prednisone. Ohhhhh prednisone- I could write about this little demon drug forever, but i’ll sum up. Odds are, at some point, they’re going to put you on this stuff. Actually, if you’re reading this, you’re probably already on it. The drug of the sad, sweaty, weight gain. I am not going to sugar coat it. Temporarily, these guys could ruin you. I’m fairly sure that nobody has ever enjoyed being on prednisone. When it says “side effects may include,” it means “THIS WILL ALMOST DEFINITELY HAPPEN TO YOU,” but that’s okay, because we all did it and survived. You will be starving. SO hungry. Like, eat everything in the house hungry. Imagine PMS but like, for The Hulk.  However, your stomach will probably also be doing this weird flip-flop thing, so good luck dealing with the hunger. THE EMOTIONS. Oh dear Lord the chemical imbalance is ridonk. Today, I cried from a Visa commercial. Apparently i’m very passionate about credit scores, and there was this puppy… Ugh it doesn’t matter what i’m trying to say is they mess with you, but it’s not permanent. Don’t freak out. It’s not real, and it will pass. I’m in the withdrawal-weaning off part now, and it’s a KILLER. Like it’s bad. But each milligram down feels like a milligram back to normalcy, and i can attest to the fact that the side effects will go away. Some days you won’t even feel em. On a more practical note, don’t ever take them on an empty stomach. Nobody warned me of that. But you need to know.

8) Brain Fog is Totally A Thing. All Hail The Post-It Note- One of the symptoms typical to autoimmune disorders is cognitive confusion, more commonly known as “brain fog.” This symptom is a tricky little bugger, and it’s hard to identify. You know that groggy, tired, “where’s my cell phone,” feeling? Yup. That would be the fog. Prepare for the fact that you’re probably going to forget things (I left my wallet on a bus, scavenged the entire country of Israel to find it, and then left my phone on the lightrail home,) and set up a system. For me, it’s the post it. For most, it’s the iphone Alert. I’m just old fashioned like that.  It’s kind of ironic how the people with so much to remember (appointments, bloodwork, dietary restrictions,) are the ones who have to deal with this symptom, but such is life. Like i said before, laugh it off.

9) You’re not flawed- I mean you are, but like, in the same way we all are. Your flaw is probably your nose, or that you’re mean, or bossy, or cranky when your tired. But your illness? It’s not a flaw. Don’t let it be something you’re embarrassed about, EVER. Your body works in a different way then other people’s do, so you have to treat it differently then other people. It’s not a reflection of your character. Sick does not equal weak. Ill does not equal vulnerable. You. Are. A. Badass.  Your immune system doesn’t know what it wants, you but sure as hell do. Don’t let anyone tell you otherwise, or attack you with previously mentioned Bambi eyes. Let this experience evolve you, let make you smarter and more kind. Insecurity turns to bitterness, and bitter doesn’t look good on anyone. In the words of my main man Ralph Waldo Emerson, “Be silly, Be Honest, Be kind.” Share your experiences, laugh about them, and be proud of what you’re doing.

10) Don’t Believe Everything You Read On The Internet- Okay i totally see the irony here. The blogger tells you not to believe the web. Ha ha. But hear me out. Until like, 50 years ago there wasn’t really evolved treatment for this sort of thing. Also, people love drama. The interweb is full of bored/sad humans trying to convince you lovely B.A.I.T’s (Badasses in training,) that this is the end of the line for you. They’ll make big scary statements, and throw “proven” statistics in your face, and post horror stories. They’ll tell you they have cures, and diets, and promise you a lupus free life if you just *insert crazy fad here.* The only statistic you need to know is this one… there is a 100% chance that you are capable of handling this, and about a 2% chance that whatever you’re reading on the internet is accurate. If you’re having a problem, ask a human Doctor. Google is a great supplement, but it will occasionally try to convince you you’re that you’re dying.

So, dolls, there it is. The survival guide. Our own little ten commandments. Please feel free to contact me with any questions, or if you ever want to vent (about something illness related or not, whatev,) or even just throw some autoimmune knowledge my way. I love hearing back from you guys. If there’s any topics you want to request, i’m here for that too.

stay badass,

Leah

Ps. Any techies out there who want to help me with blog layout, i would be forever in your debt. While i have alot to say, i’m…er…technologically challenged, to put it lightly. Contact me if you’re willing to be the best sparklemouse ever.

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.