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.

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

  1. Hi Leah! Thanks for following my blog. I was diagnosed in 2008 (right before college!) with polymyositis that has now turned into part SLE so I definitely understand some of the things you’re writing about. I look forward to reading about your experiences, something I wish I documented more. I want you to know that it gets better and you will be able to adjust and enjoy a new reality that is enhanced because we are sick. Feel free to send me an email (winnie.wongxx@gmail.com) and we can talk more if you like!

    Liked by 1 person

    • Wow thank you so much! Its so mutual. I can totally relate, my diagnosis was just before college as well. I love how you phrased that “a new reality.” I’ll definitely shoot you an email, and i look forward to reading more of your stuff in the future. Thanks for reading 🙂

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  2. Read Journey by Brandon Bays…….as cliche and unrealistic as her therapy of self-treating may sound…..when medicine fails, we become our own doctors….. By this I dont want to sound like I am simplifying your condition, but based on your writing I already feel you are fighter and you are not building a little comfy house for your illness inside of your body, but you are kicking it out which is great! My aunt has been diagnosed with a different type of autoimmune disease and she found the way out !! with positive approach and by listening to her own doctor inside of herself. I wish you all the luck in the world !!! And keep posting 🙂

    Liked by 1 person

    • Wow thank you so much, ill definitely check it out. Love suggestions like that. I actually wrote a bit about that in my newer post (not sure if youve seen it,) but yes being your own health advocate is soooo important. I’ll definitely read that and get back to you. Hope to hear more from you in the future 🙂

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  3. oh my, you are one strong girl. you’re doing good by yourself to take care of your fitness now. let me know if you want to learn about health benefits of medical marijuana, it could actually be a really good supplement to whatever you are doing.

    xo
    V

    Liked by 1 person

  4. Cant explain to you how much I love this post. I had to read when the title mentioned ‘The Kardashians and a Period Cake!’ This was actually hilarious and you are defo Badass! It also reminds me just how different everyone with Lupus journey is, like your symptoms were crazy! I hope you get better, I too am trying to control my diet in order to control Lupus! xxx

    Liked by 1 person

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