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 given 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 remissions. Flares are when you get sick. Remissions 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. For some people, the best forms of stress management are leaving your significant other and becoming sober. Levels of difficulty obviously vary. I personally 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 make 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. For all I know you’re addicted to drinking washer fluid and cheating on your girlfriend. But your illness? That’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 it 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 interweb. 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 interland is full of bored/sad humans trying to convince you lovely badasses 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,) 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

 

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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 a person buy me a drink before we start discussing my super un-cute bodily functions and whatnot, but I suppose given the circumstance this unfortunate sobriety will have to do.

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 blurry 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 the new cast of SNL, 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 problem. 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 ungodly 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 the worlds un-sexiest suntan.

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 phenomenon 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 confusion when it comes to sibling health, 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. Hardcore, 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, really fast. Think two soccer mom’s 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 both school and the gym full force. I thought it was over.

Unfortunately, I was new 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 Plaquenil, 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 confusion, 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

 

How to be a Badass

 

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, Instagram frequenting, standup-comedy watching, pumpkin spice drinking 18-year-old. I like anthropology and pizza. 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 victoriously.  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 part the camera pans away for. This is the part that nobody talks about, and it extends far 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, my uber sexy bod goes all sons of anarchy on me, and 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 songwriter stuck in her bedroom with a laptop.  Maybe, just maybe, it’ll raise a little awareness for these faceless, cure-less, 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 your 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, whichever,) 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.

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. A lot. 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.) It’s 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 a 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.