But That'll Make It Harder To Find A Husband

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But That'll Make It Harder To Find A Husband

In my last post about my personal struggle to find the necessary reproductive care, "You Never Know What Could Happen In Ten Years," I gave an overview of the issues and discussed them mostly through a medical lens of why a permanent solution is seemingly the best option for me. In this post, I'll be covering more of the implications in relationships that come along with making this kind of decision. As in my last blog, the title is a real quote from multiple people giving their opinion about my medical situation.

Whether through family, friends, or romantic partners forming intimate connections is a necessary part of the human experience. For better or for worse we are all seeking the acceptance of others, which is what makes it all the harder to deviate from traditional societal values.

Growing up as a Sick Chick I never felt like my body belonged to me. The medical system taught me that I am nothing more than another test tube while media taught me that I am nothing more than an object for others' pleasure. I wrote a post previously entitled, "Mine, Not Yours" about reclaiming ownership over my body going into these ideas more in depth. After the blog was published I had such a wonderful outpouring of love and support. But as I've gone through this journey of fighting for sterilization, people have begun to act more entitled to my body than ever before. 

Growing up the only kind of "house" I played was the kind involving writing bills (yes, I know, I was - okay, still am - a weird kid.) My first word was not "Mama" or "Dada," but instead was, "Bye!" (If that doesn't speak to my commitment issues, I don't know what does.) While I've always been the "mom friend," I've never had any great desire to actually be a mom. Unlike some of my peers I never thought about what married life might be like or day dreamed about what my future children would look like or stuffed a pillow under my shirt to imagine how I'd look pregnant. There's absolutely nothing wrong with doing any of these things, but it just wasn't - and still isn't - me. 

I've always had a lot of insecurities in romantic relationships. There is some level of discomfort in inviting another person into my life to care about me when I don't know what the future holds. Is it fair to make someone worry every time I don't respond to a text message? Is it fair to make someone put up with so many rules and regulations for my health? Is it fair to make someone miss out on what are considered "typical" experiences? The answer: no it isn't. But it also isn't my choice, its their choice. I know I'm a hypocrite. When other Sick Chicks Sisters come to me with thoughts similar to these I yell at them about body positivity, knowing their self worth, and internalized ableism. But it doesn't invalidate the insecurities I still feel despite this knowledge and it is always harder to take your own advice. 

My parents have one of the best marriages I've ever seen. They're such opposites, but they balance each other out perfectly. I've been around equally strong couples throughout my life that have influenced me as well, so my issues are not for a lack of positive role models. Even before I got sick marriage never really appealed to me. I just don't think you need a piece of paper or huge ceremony to prove your love and commitment to someone. So, between my "normal people" commitment issues and my Sick Chicks specific issues, for me to tie the knot the guy would have to be pretty freaking special. 

I have been blessed and cursed with an automatic filtering process.

My "Mr. Right" (if he exists) will fight alongside me for policy change, he'll tell me I'm beautiful (and mean it) even at 2 am in the intensive care unit (ICU), he'll comfort me when I cry and recognize his privilege of being one of the few people I allow myself to be vulnerable in front of, he'll be the one making the inappropriate, morbid joke even before I'm even able to think of one. "Mr. Right" will give me my independence. He'll be an outspoken feminist, come on random (often late-night) get busy living adventures with me, be able to climb up and down a tree all by himself (I remember Kayla, don't worry), won't judge me for eating cookie dough straight out of the tube, encourage me to go dance in the rain even if I'm only wearing underwear, and will sing along to 90's throwback trash punk in the car with me.

So yeah, my choice to fight for a hysterectomy at a young age will absolutely make it harder to find a husband (because it's not already hard to find someone you want to spend the rest of your life with?) but any man that isn't okay with my decision is not the man for me. And ladies - if your partner doesn't support you in getting potentially life saving medical care, maybe reevaluate that relationship? Because I promise you, you deserve better. 

Xo,

Sick Chick

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The Sick Chicks Gift Guide

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The Sick Chicks Gift Guide

Gift giving is hard. You never know how much to spend on someone and you have to find that right balance between being thoughtful, but not looking like you care too much in case they got you some generic gift card. Gift giving for Sick Chicks can be even harder. I mean, what do you get the girl who stays in bed all day and has enough cozy socks and blankets to last a life time? So I'm here to help you out with an official Sick Chicks approved gift list for all of your holiday, birthday, and any other gift giving occasion needs. 

Cozy Socks - Okay, I know I just said this list would be an alternative to cozy socks, but let's get real...is there even such a thing as too many cozy socks? No, there is not. Here are links to some of my personal favorites.

Cute, Affordable Compression Socks from Sock Wizard

Rosie the Riveter Knee Socks (for when you're not feeling well enough to stomp on the patriarchy, but still need to get the message across somehow) from Mod Socks

"I'm a girl, what's your superpower?" Socks from Joy of Socks

Sneakers - Now that you've got the socks, you might as well go full out and get the shoes too. It's really hard to find cute sneakers that are actually good for you and oftentimes Sick Chicks have lots of special needs with our feet. One company, Zero Tie, actually had Sick Chicks and disabled people in general in mind when designing their shoes. What makes these sneakers so different is their hands free technology, meaning while the shoes have laces, you don't need to bend down to tie/untie them making them accessible. Zero Tie sent me a pair to try out and let me tell you, I'm in LOVE. I will say that they can take a bit of time to get used to, but it is definitely worth it. They're incredibly comfortable, supportive, and fashionable. If you want to be matching with me, check out the black Rocky Raccoons and if that's not your style, don't worry that have more colors

Dry Shampoo and Leave in Conditioner - Remember that whole "staying in bed" thing? Yeah, dry shampoo and leave in conditioner become your best friends so that you aren't a gross, greasy mess (and even if you are, you do your thing girl). Some Sick Chicks can have scent sensitivities, so in my list I'm including a list of my favorite fragrance free products too. 

No Drought (and no scent) from Lush

Literally Any "Not Your Mother's" Product from Ulta

Garnier Whole Blends Coconut Oil and Coco Butter Extracts Smoothing Leave in Conditioner from Any Drug Store

Playlists - This one is 100% FREE and straight from the heart. You can make a playlist of music, or even one of movie/TV show recommendations. If you want to go the extra mile you can write a letter with it to share why you chose each song or movie. 

Doggy Chew Toys - A lot of Sick Chicks have service dogs and if you're looking for a cute and thoughtful last minute gift, get a something for their pup! A company called BarkBox offers a monthly delivery of "dog toys, treats, and total bliss." (Sounds like a good deal to me.) This kind of subscription can be super useful for Sick Chicks who might not be able to get to the store to pick up new toys and treats for their dogs and knowing something is coming monthly even just for six months can take a lot of pressure off. 

Lounge Wear (especially ones that can double as "real people clothes" when need be) - I have mastered the art of wearing pajamas in public without anyone knowing what I'm doing. While I have absolutely no shame in wearing my flannel cupcake pajama bottoms out to the grocery, there are times when I want to look more put together, but also don't have the energy to put on jeans. 

The Flannel Jogger Bottoms from Victoria Secret

Contrast Trim PJ Shorts from Forever 21

Aerie Ribbed Sleep Leggings from Aerie

Lounge Wear (especially ones that make you feel good about yourself) - Every girl deserves to feel beautiful whether she's been bed bound for days or out dancing at a club. Sometimes all you need for this confidence boost is a little secret weapon. A company Sick Chicks is working with called Slick Chicks sells cute and accessible underwear that snaps on the sides instead of needing to be pulled up! These should be on every girl's "must have" list whether you're a Sick Chicks Sister or not. Currently they come in basic black, white, and nude...but a little red surprise might be coming up (you didn't hear it from me though). I'm also linking some of my favorite bralettes. (Don't worry they don't have underwire, because really, why even wear a bralette if you're just going to add underwire at that point it's a just a bra, right?)

Out From Under Lace Halter Bra from Urban Outfitters

Nightwalker Hayden Strappy Back Bralette from Pac Sun

Lace-Trim Racerback Bralette from Charlotte Russe

Red Lipstick - She wears her strength like the perfect shade of red lipstick after all...

Creeper Ultra Matte Lip from Colour Pop

Vice Lipstick in F-Bomb from Urban Decay

Lip Lustre Glossy Lip Tint in Mystic Gypsy from NYX

Sick Chicks Swag - A bit of self promo here, but head over to our shop. All money goes back into Sick Chicks and helping us to spread the message of empowerment and unity to women all over the world with varying illnesses and disabilities, plus we have some pretty cute stuff if I do say so myself... Here are a few of my personal favorites!

Kill The Bill Not The Ill

Sicker Than Your Average Chick

Est. 2015

Hopefully this list helps lessen the internal freak out that gift giving can bring on and will inspire some presents for the Sick Chicks in your life. 

Xo,

Sick Chick

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You Never Know What Could Happen In Ten Years

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You Never Know What Could Happen In Ten Years

If I had a dollar for every time a doctor told me, "You never know what could happen in ten years," regarding reproductive care, I'd be able to buy all of my textbooks for the next four years of college and still have money left over for unlimited Starbucks during finals.

Most women say that their period is Hell and they're valid in that belief because suffering is subjective. Let me tell you about my period though, my body is an oxymoron (emphasis on the moron) and I have to be on blood thinners because of clotting while having a platelet disorder that should make me unable to clot - see the problem? My period lands me in the hospital needing blood transfusions because of the sheer amount of blood loss, I get severe anxiety every month because I'm scared for my life, and I am completely non-functional for a week to two weeks.

I can't take any kind of hormonal birth control because that puts me at an increased risk for clotting and my body is so stubborn it manages to create clots even while on blood thinners. When I tried a medication that helps control bleeding for my period recently I ended up having my first transient ischemic attack (TIA) in over a year. The options left to control my period are permanent - a hysterectomy or an ablation. But because I am a young woman, the medical system places a higher value on the lives of my hypothetical unborn children than my own.

It's not that I don't want kids, but since I became aware that my illness is genetic, the thought of having biological children kind of terrifies me. I never want to make another person go through what I've had to go through with my health. I also know that there is no chance I would survive pregnancy/labor, but because there are other ways to have children without having to go through pregnancy/labor myself this has never bothered me. (And to be honest, I've never quite seen the appeal of pregnancy anyway - I get sick most mornings as it is from medication side effects, why would I intentionally subject myself to that when there are ways around it?) 

It would be one thing if my physicians were saying no to these permanent options because of the risk of surgery, but their argument is that I could one day change my mind about having children. Here's the thing though, if I were to have a hysterectomy I would only be removing my uterus meaning I would still have my ovaries and could have biological children through a surrogate if I so choose (which as I mentioned, I would need/want anyway.) Same thing goes for an ablation. So neither of these options are actually robbing me of my chance to be a mom, it just would make me have children in a more unconventional manner, but since when have I ever done anything conventionally in my life? 

As much as I am ripping on the whole "you never know what could happen..." thing, medical professionals are right in theory. I don't know what could happen in ten years. They could isolate the genetic mutations that made me sick and cure them, or they could still be searching for an answer, or I could be dead - who knows? But I can't base my future on a maybe and it is unfair of my doctors to make me do so especially when the problem is impacting the present so intensly. 

This issue is incredibly complex and can't be talked about in just one blog post, which is why I plan to make this a series. This post is focused on the health care side of things and I want the next one to be focused on the social implications as well as conflicting views in disability rights advocacy. (Ex. disabled people had sterilization forced upon them in history, am I being counterproductive by fighting for this for myself?) 

Reproductive care is health care and we need to start accepting this as a universal truth. We need to respect women's autonomy and we need physicians to have more empathy for patients making these kinds of hard decisions. 

I'm just one person with a story like this, but I know I'm not alone and if you're experiencing difficulties with reproductive care or even if you have a counter opinion to this piece Sick Chicks would love to hear from you. Head to our "Get Involved" page to learn how to submit a Spotlight post. 

Xo,

Sick Chick

 

 

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Celebrating YOU (With a Giveaway)

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Celebrating YOU (With a Giveaway)

If I were to write a book based on my life so far, it would be called Finding Wally and Other Misadventures Along the Way.

In 2014 my mom and I traveled across the country to Virginia for my first surgery, and what was supposed to be a two week stay, turned into six weeks of struggles punctuated by hilarious misadventures. Along with rare genetic diseases, my mother passed on her lack of direction to me. During our time in Virginia and DC we joked about being the “Wandering Jews of Georgetown.” Once, while we were particularly lost, my mother decided to make a game out of what could have been a miserable situation by suggesting we look for Wally. I corrected her thinking she meant to say Waldo, but she was adamant she meant Wally. Everyone is looking for Waldo, but no one is looking for poor Wally and what was originally a silly antic has now turned into a metaphor for life.

There have been a great number of tears on this journey, but there have been an equal amount of laughs, and probably too many morbid jokes. I've found my "Wally", or my message in the mess. I am determinedto make the most positive impact possible with my time here and a big part of that is Sick Chicks.

Two years ago I put on a leather jacket, added some war paint (red lipstick), strapped on my combat boots, and created a sisterhood of the most badass babes around - I haven't looked back since. I'm beyond proud of what this international community has already accomplished in just these past two years. And while I may have started Sick Chicks, it is not mine. Sick Chicks belongs to every young woman who is chronically ill, terminally ill, disabled, and/or mentally ill; it is your movement, it is comprised of your voices, it is your safe space. I promise, that will never change.

So, we are doing this giveaway to celebrate YOU! There will be one first place and one second place winner. The first place winner will receive a Where's Wally t-shirt, two pins from Radical Buttons, a goody bag with a "Sick Love Note", and a bracelet from Watercolor Me Impressed's Christina Doherty. The second will receive two pins from Radical Buttons and a bracelet from Watercolor Me Impressed's Christina Doherty.

To enter you must make a post on social media answering one or more of the following Questions: 1) How are you searching for Wally - what are you doing to find your message in the mess? 2) What does Sick Chicks mean to you? 3) How has the Sick Chicks Sisterhood impacted you? The amount of likes/comments your post receives will be taken into account, but an anonymous judging panel will make the final decision. All giveaway entries must be posted by July 31st. To be considered you must tag your post with #sickchicks and #happybirthday along with tagging Sick Chicks' social media (Instagram @sickchickssisters, Twitter @thesickchicks, Facebook @thesickchicks).

Not going to lie, I'm on a major girl power trip, but I don't ever plan on coming down, so here's to many more years of hell raising sisterhood to come.

I can't wait to see your entries!

Xoxo,

Sick Chick 

Image Description: Items in give away pictured here. One grey "Where's Wally?" t-shirt, two bracelets, one gift bag with hearts on it, and four pins with various feminist statements.

Image Description: Items in give away pictured here. One grey "Where's Wally?" t-shirt, two bracelets, one gift bag with hearts on it, and four pins with various feminist statements.

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Savior Syndrome

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Savior Syndrome

Growing up I wasn't allowed to watch Disney princess movies. My mom hated the anti-feminist, body shaming, heteronormative messages the plot lines pushed. I didn't like this rule as a little kid and was ignorant to the issues, but now I'm beyond grateful. Instead of being raised in a household that furthered the "Damsel in Distress" complex, I was taught to be independent.

The idea of waiting on someone else to rescue me was completely foreign, so when I first encountered what I have now coined as "Savior Syndrome", I was baffled.

Savior Syndrome is when a man believes it's his job to come and save a woman, take her away from her terrible life, be the answer to all of her problems, and eventually become her world. This is extremely prevalent with sick chicks because of the way media fetishizes and romanticizes illnesses and disabilities. 

I am a human being, a very sick human being, but nonetheless a human being. I am not a piece of inspiration porn or a tool to help men feel like a hero. I already know how valuable, precious, and fragile life is, I don't need a man to teach me any of that. Everyday I am determined to make the most of whatever time I get here and live ruthlessly, I don't need a man to motivate me. I already know how to raise hell and scream louder all by myself. My (lack of) health is a part of me and isn't "fixable," especially not by a teenage boy. I am the hero of my own story, not a man. And if I do "get saved," it'll be by myself not because of some want-to-be Prince Charming. 

I'm not saying all men have Savior Syndrome, I'm just saying media pushes these harmful ideas and when men do have it, its very problematic. I don't believe that every guy that wants to date a sick chick is only trying to save her, I just recognize it is an all too common thread. I'm not a "man-hater" either. However, I do hate Savior Syndrome and the archaic, sexist ideals it reinforces. 

Sick Chicks Sisters: I implore you to speak out against Savior Syndrome, get busy living on your own terms, and grab a sword because you do not need a knight or prince. You are all empowered, boss ass bitches who don't need to be saved, no matter what Disney says. 

Xo,

Sick Chick 

 

 

 

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To Rep. Brooks - From a Girl Who is Trying, yet Still Stuck Kind of Dying

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To Rep. Brooks - From a Girl Who is Trying, yet Still Stuck Kind of Dying

Dear Representative Brooks,

Speaking on the American Health Care Act/Trumpcare you said, “It will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people who have done things the right way that are seeing their costs skyrocket." 

When I first read this comment I thought it was something from the popular satirical news source The Onion because it just couldn't be real. But no, this was just another in a series of ignorant remarks on healthcare made by a white, healthy, able-bodied man in Congress. 

I try to be respectful of everyone's opinions, but your comments made me so nauseated it's absolutely impossible to.

My world changed dramatically about eight years ago when I had a back injury that served as a trigger event for underlying, preexisting genetic diseases my family and I were unaware about. Before that incident I was "normal" - whatever that means - I did "things to keep [my] body healthy." But that didn't prevent genetics from taking over. 

My illness has caused me face death many times. I have been told I would never walk again, never read again let alone write, never be able to go to college, never be able to live independently, and more. But here I am, alive and having recently celebrated my eighteenth birthday, a huge milestone that once seemed unreachable. I have had to relearn how to walk six times, but today am walking without assistance. Through intensive speech therapy I am reading and writing again. Next fall I will be going across the country to George Washington University for college with a merit scholarship. 

 

All of these huge accomplishments only happened because I fought my ass off, raised hell, and wouldn't take no for an answer. So tell me again how I'm not doing things right and I'm not trying hard enough to be healthy? 

Even today my life is still in a fragile position of pseudo-stability. But, like many patients, I refuse to be complacent in my future.  

When disease comes into your life, especially rare and undiagnosed disease like I am dealing with, there is no rule book. You quickly learn there is no such thing as "right" or "wrong", there's only survival and you do whatever you have to do to achieve that. 

Have you ever even set foot on the National Institute of Health's (NIH) campus? Have you been to The Children's INN? Have you seen the looks of despair on families' faces and the equally as powerful looks of hope because they know this is the only option left to save themselves or their children? Have you ever looked into a patient's eyes and seen the intense determination to never give up? Have you ever had a loved one so sick they feared for their life? Have you ever been so sick that you feared for your life? No, because if you had experienced any of the above questions you wouldn't be wanting to cut funding from the NIH and you sure as hell wouldn't be saying things like, "They're just not trying hard enough to be healthy." 

The House vote on AHCA is tomorrow morning. I don't expect you to suddenly change your opinions. I am not a constituent, why would you listen to me? But, one in ten people have a rare disease, which makes you think how common are common diseases? Think about how many thousands of your constituents you will impact negatively by voting "yes" on this legislation.

For all of the other Representatives contemplating a "yes" vote, this message holds true for you too. 

You've pissed off the wrong crowd, Representative Brooks. Let me tell you, there's no group of stronger fighters than sick patients and our families. As my story shows, when we put our minds to something, we can make even the impossible happen. 

Sincerely,

Shira Strongin // Sick Chicks, Founder

 

 

 

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Mine, Not Yours

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Mine, Not Yours

Society taught me from an early age that my body is for the consumption of others. That my body had to meet standards someone else set (never what I wanted). That being a woman meant waiting for Prince Charming to come save me and fix everything (they didn't tell me the prince would be a villain in disguise...)

Growing up in and out of hospitals teaches you that your body is just an object; another number for research, another body part - never a whole person, another test result, etc. It dehumanizes you.

Being sick makes it hard to love your body/be body positive. In my case, it is the very thing trying to kill me after all (but hey, the only thing strong enough to take me down is myself.) Because of this, I have never felt worthy of the standards set for women and in truth, I never will be, but that's okay. Hell, it's more than okay. Those standards are complete BS anyway.

Photograph by Moxie Glam ft. fusion scar 

Photograph by Moxie Glam ft. fusion scar 

I am proud of each scar and the stories of survival behind them. I am proud of my curves because I fought to have them. I love my ghostly-white skin because it is beautiful, not sickly. I am proud of my brain because, despite being damaged, it is still sharper than many others' and has worked hard to be that way. I am proud of my voice and its ability to continually scream louder despite protests from my lungs.

NIH Medical Photography, underwear from The Outrage

NIH Medical Photography, underwear from The Outrage

I am reclaiming my body. It is mine, not yours...and it never will be again.

Happy International Women's Day.

Xoxo,

Sick Chick

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Thoughts on Fire

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Thoughts on Fire

Amelia will always be one of my hardest goodbyes.

The moment I met her my life was forever changed. I don't know if I believe in fate, but there's no other explanation. Words cannot express how special of a person she still is. I don't think people are inherently bad or good, but to this day she makes me question that belief because of her pure goodness that radiated throughout her.  A fire blazed so brightly in her soul those lucky enough to get close weren't burned, but ignited.

On paper her life was a tragedy, but in reality it was beautiful. Her unshakeable faith shone in even the darkest hours. She wore strength like the perfect shade of red lipstick.

Sunsets, bucket lists, my first ever snowy Christmas, and chipotle chips - that's how I'll always remember Milly. She might be gone physically, but her message lives on. She poured gasoline on the flickering embers in my own soul, which have now grown into an unstoppable wildfire.

Fearing death is pointless, what we should really be terrified of is not living life to the fullest. Amelia taught me it's not about how much time you get, but what you do with the time you're given. So make mistakes, sing and dance in the rain, celebrate the small things, laugh loudly, don't wonder what could've been, be present in each precious moment, take risks, make a lasting positive impact on this world, commit random acts of kindness, cry and embrace the tears running down your face...just whatever you do - ruthlessly live.

We all only have so much time and it shouldn't be wasted putting out fires. Instead we should all follow Amelia’s lead and start them.

Xoxo,

Sick Chick

Love you to the moon and back, big sis, over and over. 

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The Genetic Lottery

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The Genetic Lottery

The chance of winning the state lottery is one in a million. Well, I didn't win that unfortunately, but I seem to have won the genetic lottery. 

In exactly one week it is rare disease day and I will be celebrating with the National Institute of Health (NIH).

I have a currently undiagnosed neurovascular condition that has been getting extremely worse over the past year. It was the reason for my brain surgery, it is the reason I've been on two blood thinners for approximately a year now, the reason I had to stop driving, the reason I could not take standardized testing for college, and the reason I can no longer do many of the things I love. Even reading, writing, and speaking - my passions - have been stolen at varying levels.  

In my search for an answer I participated in an NIH research study. Based off of two vials of (incorrectly completed) blood work and no other knowledge about my case, the NIH fit me in two weeks after seeing the results. For those unfamiliar with the NIH, it can take months to even get on their waiting list, let alone to be seen. But I'm an odds breaker (yet again), so I might not get into college, but I got into the NIH without even applying.  

I am equally excited and nervous. I'm trying not to get my hopes up because I know the crash will be devastating, but it's hard not to. The only appropriate way to handle this is by laughing at life on a park bench. Oh, and eating cookie dough. Lots of cookie dough. This has been a rollercoaster of a year and it feels like there is finally some overdue upward movement. I'm cautiously optimistic.

I plan to document my NIH stay through my blog here when possible and through social media. Be sure to follow my Instagram/ Personal Twitter @shirastrongin and my new Sick Chicks dedicated Snapchat @sickchicksshira to stay updated. 

Sometimes life hands you lemons, other times life hands you lottery tickets. My life has been full of lottery tickets, this is just the next one, so bring it on. 

One in a million, yup, that's me. 

Xoxo,

Sick Chick 

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Affordable Care Act

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Affordable Care Act

To start off, this post is nonpartisan as health care is a nonpartisan issue despite government making it partisan. I recognize that the Affordable Care Act (also known as Obamacare) is not perfect legislation, there is no such thing, but it is the best option for many right now especially with no replacement plan after the repeal. My passions in ACA are the women's health care rights, along with being able to stay on a parent's insurance until age 18, and being allowed insurance despite pre-existing conditions. There are a lot more reasons Obamacare is important and good, but these will be what I focus on this post. 

This summer, the night before the Common App came out I ended up the ER after a stroke (a sign, I know). This was not my first neurovascular event, and it wasn't my last either. I'm seventeen and my  eighteenth birthday is in just a couple of months. If the ACA is repealed I will be kicked off of my parent's insurance and I will not be able to get new insurance on my own (let alone affordable insurance) because of my preexisting condition(s). Many people have said, "Don't worry! They are planning on keeping those things in the replacement, you'll still have insurance!" Here's the problem: it can be repealed without a ready/available replacement, so until there is a replacement myself and many, many others will be stuck in limbo. Also, we haven't seen any replacement yet, how can we be sure those things will stay? Deals change all of the time and promises are broken in politics. Until we see this in writing in replacement legislation, we can't feel safe/comfortable.

Access to health care is a human right and this impacts everyone. As I always say, health is not guaranteed, so throw your stones at Obamacare, but if your child (or yourself) was sick, you'd want these key pieces to be in effect. 

I know that it seems daunting, but you can help.

I worked with Ellie Wheeler, Founder of the Superhero Project (which you can find under the "Our Community" page) to create a video sharing the importance of getting involved along with ideas on how to. You can see the video here and you can see the document with a script outline for calls/emails and some guidelines here.

There is power in your story, you can choose to help people with it. No matter your age, please use your voice and fight back however you are able to. 

Xoxo,

Sick Chick 

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Of Merriness and Memories

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Of Merriness and Memories

There is something completely magical about the holidays. No matter what you celebrate; Hanukkah, Christmas, Hallmark Christmas, or Kwanza there's no denying that something in the air is different. Maybe it is the pretty lights (which I firmly believe should be left up year round), maybe it is the crispness in the air (even here in supposedly sunny SoCal), or maybe it is the unique cinnamon and pine smell of this time of year. 

Holiday magic can be found anywhere, even in the most unlikely of places, such as a hospital. The Hanukkah/Christmas/New Year's I spent in the hospital back in the Pittsburgh six years ago is still regarded as the best holiday ever. I was across the country and away from family, but in the fellow patients and nurses, I found a second family.  

My roommate and I decorated the dimly lit, cramped hospital room to make it feel more cozy and bring cheeriness. It was snowing outside, so a key part of our decorating was cozy blankets and stuffed animals. I remember that Christmas morning like it was yesterday. It was snowing outside and there were twinkly lights shining from the building across our window. We were woken up early by Child Life bringing boxes over flowing with donated gifts. Being the token Jew in the hospital I had no expectations to be included in the Christmas festivities, but everyone made me feel so loved and welcomed. Seeing that box of completely personalized presents (even thinking about it now) made me tear up. The pure thoughtfulness and generosity was overwhelming. After sitting in shock for a while, my roommate and I dove in to the boxes alternating opening presents. Later we went out and joined in the festivities with the rest of the patients. 

Being in a hospital over the holidays would seem depressing, but the scene I was greeted by stepping out into the main hall was anything but. Patients at this hospital came from all different backgrounds, I remember one four year old who had come from all of the way from Qatar for treatment, but the uniqueness of our situations and the holiday spirit was unifying. I remember one sixteen or seventeen year old boy who had been in a horrible car accident and was now severely impacted both physically and cognitively. He did not speak, and could not, but was the happiest person I have ever known with an infectious smile. Christmas morning he got a nerf gun as a present. He used his hands (with help from fellow patients, such as myself, and nurses) for the first time in months to get into a nerf gun war with the physical therapists. He laughed so hard that morning and it was the first time he had done so, he even managed small, but clear "yes's" and "no's". If that is not a Christmas Miracle, I don't know what is. 

We spent New Year's Eve crowded on my very ill roommate's bed. When the ball dropped we cheered so loudly I wouldn't be surprised if the neighborhood surrounding the hospital heard us. For the first time, I understood the importance of ringing in the new year. It is a reminder of hope, possibility, and time marching on despite leaving soldiers behind.  

I found a sister in my roommate and this will be my first holiday since losing her.  "Some people have such a strong spirit inside of them that they give you the fire you need to keep pushing in times when you think you can't move an inch," she wrote in a blog post about the holiday we spent together. Well, Milly, you are one of those people. I am forever grateful for the lessons you have taught me, the memories we share, and most of all, for the fire you ignited in me. I love you to the moon and back, over and over. 

My hope is for everyone to experience pure holiday magic, like I did in that hospital, at least once. Maybe this will be the year for you?

Xoxo,

Sick Chick

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There's An Ass for Every Seat

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There's An Ass for Every Seat

My dad always tells the story of going to a car dealership where there was this incredibly ugly green car and he asked the salesman, "Who buys this?!" The salesman responded, "There's an ass for every seat." As I'm sure you can guess, my father finds this quite quotable, especially during the college application process. 

Just like there's an ass for every seat, there's a college for every person.  

Some food for thought:

When you're a disabled or health challenged student there is so much more to consider than just the school itself. It has to be near quality medical care, and if you have a rare disease that limits your choices even more because a "good" hospital might not be a "good" hospital for you. The weather has to be suitable for your health conditions. Just because a campus is "accessible" doesn't actually mean it is accessible. Do you have to walk 20 minutes across campus with hills to get to class with no option of a shuttle? Not 100% accessible. Disabled students have to consider the strength of the Disability Services Office. Chronically Ill students have to search for schools that offer pro-rated tuition because it can longer to graduate, which adds expenses (check post #FeministAmbassador for opportunity to get involved in creating a Sick Chicks Scholarship Fund). Students who were unable to take standardized testing due to health challenges are even more limited by testing policy. 

This is only talking about disabled and chronically ill students, not even getting into all of the other various situations complicating college decisions. 

The whole application process is anxiety inducing enough without fearing what people's reactions to potential colleges will be. 

For any sick chicks who are going through the application process or are currently in college, I invite you to submit to the Spotlight program to share your experience and any tips. 

Xoxo,

Sick Chick 

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#CuresNow: WE DID IT

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#CuresNow: WE DID IT

We did it. We did it. We actually freaking did it. 

I'm still crying as I process what this means. A once uncertain future is starting look brighter and I cannot express my gratitude. I am so fortunate to have been directly involved with history, but I did not do this alone. 

Emily, the satellite to my stars, the fire to my flood, the other half of the dynamic duo...where do I begin? Thank you for going on "get-busy-living" adventures with me. Thank you for fangirl-ing with me over Congress. Thank you for starting rallies and breaking ceilings with me. Thank you for crying with me in a hotel room when a reminder of what we are fighting for hit too close to home. I'm not a miracle, and you're not a saint, but we've proved we are more than soldiers on a road to nowhere.

Stephanie, how did I get so lucky to have a role model/friend/fellow advocate like you in my life? Thank you for pushing me and helping me realize all of my potential. Thank you for steering me in the right direction. Thank you for providing laughs when necessary and doses of reality as well. I cannot wait to celebrate in DC (waffles will be necessary). 

Senator Feinstein and Senator Boxer, I am privileged to live in a state where both of my Senators are such strong women who voted YES on Cures. It means the world to a constituent to know her legislators are backing her in the fight. 

The House Committee of Energy and Commerce Team, thank you for your support throughout this process and sparking the conversation. Being able to work with the Communications team was an experience like no other and I look forward to continuing this work in the future. 

My friends, thank you for putting up with my endless craziness and ramblings about staffers, sub-sections, committees, and rallies. Thank you for supporting me through this all and fighting right beside me. 

My parents...this past year has been really rough. Currently, we are facing some new challenges and new uncertainty, but 21st Century Cures gives hope that nothing else could. I couldn't be prouder to work on this for you. Thank you for driving me all around for meetings and flying with me to DC. Thank you for putting up with me over the past couple of years. Thank you for celebrating with me and truly realizing weight of this victory. 

Amelia, I wish you were here right now to share in this. You reignited my fight and I am holding you closer than ever today. I love you to the moon and back forever, sister. We have hope.

The fight is nowhere near over. Next year, we will get OPEN ACT passed mark my words. Right now though, I am going to celebrate the endless possibilities of a once cloudy future.

Thank you for giving us the Century, we won't let you down. 

Xoxo,

Sick Chick

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Dear Sen. Warren,

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Dear Sen. Warren,

Dear Sen. Warren,

When you killed Orphan Product Extensions Now Accelerating Cures and Treatments Act (OPEN ACT) you effectively killed me. I know that writing this will not bring back OPEN ACT, but I also know that I cannot sit idly by when my future is at stake.

At age 17, I am living on borrowed time because of rare disease. I have become a strong advocate for health policy, knowing it is the only way to ensure a future, but your strong opposition to Cures Now feels like the trigger going off in an already loaded gun. 95% of rare diseases do not have treatments, so patients  rely on off label medications.  As I am sure you are familiar with, OPEN ACT intended to take medication already approved by the FDA and prove these safe and effective for rare disease patients. Yes, increased research for rare disease patients is necessary, but the patient populations are so small, there is little to no incentive for drug development and research. What we need are treatments that have already gone through the approval process to be repurposed.

Personally, I have to take over twenty medications a day, none of which are used for their approved purpose. I am fortunate because my family can afford it, but insurance will not cover a majority of these medications and I will be put in a position of choosing to pay for college or life saving/changing medication. Again, I am in the privileged few, but there are many families who have the choice between putting food on the table and paying for these necessary medications.

Without the ability to use off label medication I would not be alive. There will come a time in the future where a doctor will refuse to prescribe a life saving medication because it is off label, or I will not be able to afford it. You claim to not be bought off, to be a woman for the people, but this decision does not seem to be for the people - it seems to be for bio-pharma.

I am thankful that the 21st Century Cures package, which I have been advocating passionately for, for over a year, looks like it will be passed despite your opposition. There are still many important sections/sub-sections, but OPEN ACT was vital to my, along with many others’, future.

I know that because I am not a constituent you will most likely disregard this. You have already taken so much from me, I will not allow you to take away my voice or my hope.

Be ready for a fight with 21st Century Cures because rare and common disease advocates aren't backing down. I urge you to join us instead of going against us.

Sincerely,

Shira Strongin

Founder of Sick Chicks, Patient Activist

www.thesickchicks.com

 

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Day of Thanks?

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Day of Thanks?

This has been one hell of a year.

I look back to last Thanksgiving where I was unable to travel to spend the holiday with relatives because of my first deep vein thrombosis (DVT). Now, I am just grateful it looks like I will not be celebrating in the hospital again.

That initial DVT started me on a journey I never foresaw - filled with tears, endless frustration, too many close calls with my old friend Death, hope, cross-country travel, two major surgeries within the span of one month, and lots of laughter. Because if you can't find the humor in having a stroke the night before The Common App comes out, what can you find the humor in? I mean, different strokes for different folks (yes, I am planning on turning that into an awareness campaign). 

Given all of that, I still regard this as one of my best years and that is what I am thankful for. I am thankful for the once in a generation opportunity to secure my future through 21st Century Cures Legislation. I am thankful for my incredible doctors who are working too hard saving my life for it to all be in vein (get it? get it?). I am thankful for organizations such as EveryLife, Dysautonomia International, and Global Genes who I am privileged to work with and fight beside everyday for a better future, let alone call a family. I am thankful to have these opportunities to speak and write about topics I am so passionate about, such as youth advocacy, health policy, and women's empowerment.

I am thankful to have such special people in my life. There is no single word that can truly describe my friends - who are my Ohana, or chosen family - but I will try in the most concise manner possible. They are courageous, loyal, fighters who are shaping change and succeeding despite the challenges life has thrown at them (whether this be health related or not). 

Amelia - There is too much to say to you, but most importantly...thank you for teaching me what has become my motto this year; it is not about how much time we get, but what we do with the time we are given. It is because of this lesson that I am truly able to look back at this year as one of the best. No matter what happened this past year or what will happen in the future, I know that the work I am doing is influencing positive change in this world. I know that I am making the most of my time, short or long. 

My Parents - I could write an entire post simply thanking you two, but instead I'll keep it brief. Thank you for the misadventures this past year, here's to many more. Thank you for going to the ends of the earth and beyond. Thank you for JMSing and JFSing me. 

Yes, life can really freaking suck, but know what? I am alive and thriving beyond what I ever imagined despite all of the intense struggles. I am thankful every single day for that. I don't need a holiday to remind me. I am reminded when I see a cotton candy sunset, when I look up at the glimmering stars, and when I hear waves crashing onto the shore. 

Everyday should be a Thanksgiving...but maybe without all of the other obligations. That's a separate post though. 

Xoxo,

Sick Chick 

 

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America the Beautiful

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America the Beautiful

America the beautiful. America the brave. 

America...what the hell have you done? 

You've shortened my already limited lifespan. You've shaken my LGBTQ friends to the core. You've taken me back to the night I was sobbing on the corner of my bathroom floor because I lost a friend to gun violence and another because of lack of accessible healthcare. 

Best of all, you've made it seem okay to forcibly take women against their will. 

Come 2017 we will have a president who mocked a disabled reporter on national TV. Come 2017 we will have a president who wants to make gun laws even looser than they are already. Come 2017 we will have a president who promotes grabbing women by the pu$$y. 

I cannot stand by and watch this happen. I keep waiting for someone to come out and yell, "Gotcha!" But, this is our future. 

Please someone justify any of this to me: A young, disabled, woman who knows what it's like to have choice taken from me. 

So, please someone explain this to me. Because I'm completely lost. 

I will continue fighting and keeping my promises to those we have lost for a better future. A future where being a white, wealthy, man doesn't allow you to get away with rape, homophobia, sexism, ableism, and racism. 

Empowered women, empower women and now we have to stick together more than ever. 

Xoxo,

A Nasty Woman 

 

 

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#FeministAmbassador

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#FeministAmbassador

If you know me, you know my obsession with Feminist Apparel. They're shirts and socks are staple pieces in my hospital wardrobe providing comic relief and remind doctors that "Femme Ain't Frail". Well, now I have the exciting opportunity to partner with Feminist Apparel as a Feminist Ambassador!

For a long time I've wanted to start a Sick Chicks Scholarship Fund. I've realized through my own college application process that there are very few college scholarships available for students with illnesses and disabilities - especially rare diagnoses - and most of us can't get any merit or sports scholarships since we didn't go to traditional school or physically can't participate in sports. College is also extremely expensive if you aren't able to get a scholarship of some kind, and with medical bills the cost of tuition just isn't feasible for many families. You might be asking, "Well, then why not get financial aid?" This is where things get complicated. On paper, many of us don't need financial assistance, but there are so many other factors. These illnesses aren't acute and we'll be paying medical bills our entire life, we can't afford to take on that type of student debt on top of it. Many of us take off-label medication, we can't function/wouldn't be alive without it, but insurance doesn't cover those meds. (...Which is why we need OPEN ACT, sorry I had to.) Also, many chronically ill students take longer to graduate because we are unable to take the full course load required, which adds to expenses.  It is a really horrible feeling knowing that paying for (overpriced...but that's a separate fight) life saving treatments, might be the reason that you can't pay for college or other things to allow you to participate in life. 

So, I want to help. Hopefully by the end of this year we will have the first application for a Sick Chicks Scholarship! Women's education is extremely important and finances due to health circumstances should not be a barrier to education. Go to www.feministapparel.com  and use the promo code 'SHIRA10' for 10% off and $3 of each purchase will go to helping start this Scholarship! This code is reusable, so don't worry Sick Chicks has got you covered for all of your gift giving needs coming up for Fall and Winter. Every dollar counts, please, please share! 

Xoxo,

Sick Chick

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No Cinderella

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No Cinderella

I've been on a Disney Throwback kick lately, can you blame me for the nostalgia? Buzzfeed's article seriously got it right when they said the 90's are coming back and just repeating them-self. Anyway, I found my favorite old Disney song, "Cinderella" by The Cheetah Girls. It is a standout feminist anthem in a sea of "someday my prince will come"s whining about life only beginning when the handsome man comes to rescue the girl who can't survive by herself. 

Don't see this as an anti-Disney rant, because trust me, I love Disney as much as the next person. I can quote any classic Disney movie to you and I'll happily break out in High School Musical any time, any where - you can Bet On It. But, my parents raised me in a feminist household where I wasn't allowed to watch the Disney Princess movies as a child because of their anti-feminist, body shaming, etc. messages. (And we wonder why I'm the activist freak I am today?) 

I am a strong, independent woman. I will not be like Cinderella. My "dark, cold, dusty cellar" is my health, hospitals, and even my own room that holds me prisoner at times because of being too sick to leave. But, I'm not waiting around for a "prince to come and set me free". I know that the only person who can save me is, me. So, when the question of why I handle my health in the way I do (with jokes, smiles, writing, and advocating) is asked, well,  it's because I refuse to be the woman who ends up like Ariel/The Little Mermaid with her voice taken away. I have a voice, a powerful one, and I want to use it for the better. The fairy tale life isn't for me, that much is pretty clear. To quote one of my absolute favorite Disney princesses though, "I'm a damsel. I'm in distress. I can handle this." This has always been much more of my motto. My Sick Chicks Sisters help me handle it. Advocating for health policy helps me handle it. Writing helps me handle it. Listening to music, swing dancing, watching Netflix and so much more help me handle it.

Wanting a prince by no means makes you weak. In fact, all relationships are extremely important and I'm currently asking for people to submit Spotlights specifically on this topic (so if you're interested in that - please email your submissions through the "Let's Talk" page). However, there is a problem with the idea that women can't be the heroes of our own stories. My challenge for you is: instead of waiting for a prince to save and love you, try saving and loving yourself. 

Xoxo, 

Sick Chick (aka, She-Rah; the warrior princess) 

 

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The Fight For Cures Now

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The Fight For Cures Now

"Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments." - Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph? 

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I'm most passionate about and have fought the hardest for is facing it's day in the Senate. 

~ What do we want? Cures! When do we want them? Right. Freaking. Now. ~ 

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, "Well, I'm not sick, so why does this affect me?" or, "I don't have a rare disease, so why do I care?" I'm here to answer those questions. 

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you'll be hoping that 21st Century Cures in action to produce treatments and cures. Cures are for everyone NOT just rare disease patients. This affects cancer patients, this even affects the hot topic zika virus. But, OPEN Act (something I'm incredibly passionate about that gives bio pharmaceutical companies incentive to make off label medication on label for rare diseases that otherwise wouldn't have treatments) is only for rare disease patients. So then comes the question again, "Why should I care?" Because, 1 in 10 people have a rare disease. By that statistic everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece - whoever it may be because without these vital pieces of legislation they might me in the same situation as me...stuck living on borrowed time and who knows how long that lasts for? 

Ways To Get Involved:

1. Change your profile picture on Facebook and Twitter using this link to share your support for Cures Now 

2. Use the hashtags "#CuresNow" and "#OPENAct" on social media to spread the word and to get the attention of your local legislators, don't be afraid to tag them in posts about the upcoming legislation!

3. Use these hashtags and share why YOU need #CuresNow (for ex. "I need #CuresNow and #OPENAct because paying for life saving medications or college shouldn't even be a choice") 

4. Write to your local legislators! As constituents, you hold great influence. Please take advantage of this and share your story! Follow this link

5. Submit a Spotlight story! I'll be publishing stories throughout the month of August and into early September in the Spotlight program specifically relating to the need for Cures Now. Share how you're fighting for Cures Now, how off label medication saved your life/the impact the legislation would have if in place, and/or why you need Cures Now!

~ We have the power to impact great change. Right now we just have take the moment and turn it into a movement with lasting momentum. 

Help us win the century, and just wait and see we do with it. I promise you won't be disappointed. ~

Xoxo,

Sick Chicks 

Facebook.com/thesickchicks

Instagram @shirastrongin 

Twitter @sick_chicks 

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What A Long Strange Trip

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What A Long Strange Trip

Happy Birthday to Sick Chicks! It has officially been one year since the website went live and our incredible success wouldn't be possible without all of the support we've received along the way. Originally "Sick Chick" was a pen name for my anonymous personal blog (I have since "come out of the disability closet" and stopped being anonymous, but will forever be "Sick Chick"), but I quickly realized through being picked up by an east coast based non-profit, having interview opportunities, and being asked to speak at national conferences that "Sick Chick" could be so much more. While it took years, thank you all for helping to make my dreams a reality. I firmly believe that empowered women empower women and that's what I sick chicks do - we come together and empower each other through really tough times, whether that means being a shoulder to cry on or making inappropriate jokes, we're there for each other through the good, the bad, and the ugly. 

This year has been filled with ups and downs, it started off with me being named the Global Genes 2015 RARE Champion of Hope - Teen Advocate, which was such an immense honor and fueled my passion even more for activism. I made many friends at the Summit and look forward to attending this year with my We Are More Family. I've been pushing for specific legislation (OPEN Act and 21st Century Cures) for a while and this year I've gotten to see a great deal of progress being made on those bills. I even got to speak at a break out session during a Rare Disease Legislative Advocacy conference where we lobbied in DC for these to bills.

Sick Chicks has grown beyond my wildest dreams. I've had a Forbes article written about me, I've had my work published, done podcasts, and there is still so much more to come. We've been involved with and partnered with so many organizations led by strong, inspiring women; Made by Mer, InvisiYouth, Debra of America, The Literal Heart, The Superhero Project, Emily's Fight, Hannah's Heartbeat, Dysautonomia Intl., Global Genes, and many more. We've been able to host fun events for local California girls and are finding ways to have Sick Chicks sponsored events all over since we are International! 

But, unfortunately, nothing is ever completely positive. This year was very rough health wise. I spent most of the year in and out of the hospital and had two major surgeries (I broke my mom's rule of one major surgery every two years...oops.) I had multiple Transient Ischemic Attacks (TIAs) or mini strokes, and now am dealing with many cognitive impairments that severely impact my reading/writing - as a result. I've been told I'll never be able to read or write at the level I was at before. But, all I know is with my sick chicks at my side, anything is possible. I'm not going down without a fight, and I'm not just going to just accept this. 

Thank you all for sticking by me, supporting Sick Chicks and our advocacy efforts. I can't tell you how much it means. 

We might not have found Wally this year, but there's always next year, right?

Xoxo,

Sick Chick

 

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