Hindsight is 2020: My Time in Eating Disorder Treatment

This past year has been a complete and utter rollercoaster ride filled with some of the highest highs I’ve ever experienced mixed in with a few of the lowest lows including, and probably most importantly, spending time in eating disorder treatment.

Last spring I shared my excitement over the potential to finally be in a committed relationship with life thanks to an experimental treatment for my rare disease, which I’m thrilled to say is continuing to be extremely promising. I quickly realized that it is entirely impossible to be in a committed relationship with life while only being in a friends with benefits relationship with recovery. You know, we’d fuck on the weekends, but stayed at a distance the rest of the week. Enough to make me feel something, but always leaving me wanting more and never sure of which one; safety or risk? The eating disorder or recovery? 

On my very first day the clinical director of my treatment center in California told me that, if I gave myself over to the process, I would walk out a completely different person than I walked in. I didn’t believe her, but I’m beyond grateful she was right. 

As I’m writing this, I’m still in treatment*, but now at a step down level of care in a different facility in DC and my final discharge date is approaching quickly, which is truly surreal. 

I initially found out I was being sent to treatment about a month after publishing my blog sharing my long battle with an eating disorder. It should not have been a surprise, after all, as I shared in the post, my outpatient therapist and dietician were bringing up the possibility of needing to go inpatient. I have an uncanny ability to avoid things though and figured this would be another on the list. The whole situation felt like a lucid nightmare, something I’d eventually wake up from leaving me a bit shaken, but with everything having returned to normal. (To be fair, that feeling might’ve been in part due to the severe lack of nutrition.) 

At the time I had absolutely no intention of ever sharing this part of my journey. I’ll be honest and admit that in the beginning this was partially due to still being in the friends with benefits phase. I did not know if I really wanted full recovery let alone the accountability of being public with my time in treatment. Even after that mental shift took place, I was still pretty much set on privacy until recently. Until I felt proud of myself for the first time in my life. That statement might come as a surprise given the objective extent of my accomplishments over the course of my life thus far, but it’s true. I was too busy listening to the voice in my head screaming that I am worthless, that no matter what I do, I’ll never be enough.

You see, living with an eating disorder is like having another person inside your brain 24/7. It’s presence feels like a protector, someone looking out for your best interests and making sure you are always striving to be better, but in reality it is just destroying you from the inside. It takes away everything you love and makes you think you deserve it. Unsubscribing from the deeply rooted beliefs my eating disorder spent the better part of a lifetime instilling is a challenge to say the least, but it gets easier everyday to tell it’s shrill voice to shut the hell up and give myself grace instead.

In my blog disclosing my eating disorder I wrote, “Sharing this post is one of the hardest things I have ever done (and I’ve re-learned how to walk five times, so that’s saying something). I’m scared to admit my brokenness, and not just admit it, but put it on full display for the world to see.” I often still feel this way. In fact, as I type this tears are streaming down my face and in this moment I’m still unsure of how long it will take me to actually hit the “Save & Publish” button. It could be two weeks or two months or hell even two years and I’m having to remind myself that, that’s okay.

I don’t know how this post will be received and I’d be lying if I said I didn’t care, but at the end of the day it really doesn’t matter. Because sharing now isn’t about being open and honest, though those are important. It isn’t even about reducing the shame and stigma, which is also important. Rather, it is about grieving the years spent wasted in my disorder and celebrating how much I have overcome to get to this point.

The terrifying reality of eating disorders: if you’re not recovering, you’re dying. And I am so fucking done with dying. 

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* Note: At the time of (finally) publishing it has been four months since I “graduated” from program. I spent a whopping total of 6 months, 25 weeks, 175 days in treatment fighting to get back in my body.

While I’m in awe of how far I came in that time, I’m by no means “cured.” I’ve had struggles that have led to slip ups, especially recently. If I’m being honest, the chaos of the world and it’s unexpected triggers have pushed me to the brink of a full-blown relapse. I’m even considering doing a (hopefully) quick stint back in virtual treatment.

It might seem strange that I’ve chosen now, in the middle of a pandemic and the day before my birthday (not to mention while I’m considering going back to treatment), to share, but it couldn’t be more fitting.

I didn’t realize just how far I backslid until I had a bit of a wake up call the other day. In between initially writing this blog about four and a half months ago and hitting publish today I lost that crucial sense of pride I’d been feeling. Even when I was not engaging in actual behaviors, I was letting my eating disorder’s evil voice dictate how I saw myself and that’s just as damaging.

My earlier words were filled with such happiness and strength, which is so far from what I’m feeling now. Instead I’ve been angry, really angry these past few weeks. I got a taste (literally) of what life can look like in recovery from mental health and stability from physical health. Now that’s gone with no timeline of when it’s coming back. I had processed the grief of the life I lost before, but I wasn’t prepared to grieve the life I gained in the interim. The isolation and overwhelming sense of helplessness in this situation have been getting to me and allowed my eating disorder to slowly, but surely take over again, ripping away the person I worked so hard to become the past ten months, the one I was finally learning to love. It’s frankly heartbreaking.

With all of the darkness and uncertainty right now it’s been hard to remind myself what I have to dig myself out of this hole for. Then, while re-reading what I wrote above, the answer dawned on me and it’s the same as always: life. Because, even during this turbulent time, life is always worth fighting for. And, like anything good in this world, just because it’s worth it, doesn’t mean it’s easy.

Recovery is a never-ending battle and healing is not linear. It’s filled with twists, turns, and lots of loop-de-loops. While I’m absolutely terrified of reaching the point of a full-blown relapse like I have in the past, I’m more hopeful than ever before. Because, despite what social distancing is leading me to believe, this time around I have something I’ve never had in my fight before: support.

Here’s to dual velociraptor screams, Florida, and fucking it up to the tempo. Here’s to yeeting and yoinking. Here’s to Chronic Taco, taking things step by step, and Aldovia. Here’s to beaches and boba. Here’s to cool whip, stolen pumpkins, and the 8:23. Here’s to whore cookies and wholesome content. Here’s to tiny desk, GPS, and never holding the hot sauce. Here’s to Fleetwood Mac and face masks. Here’s to zombies, glitter bombs, and walking into walls. Here’s to faith and freedom. And generally speaking, “Here’s to the ones who stuck in when they should’ve run despite all of my ranting and raging.” (“Reasons Not To Die” by Ryn Weaver)

But most importantly, here’s to my family back at the shoreline and the self-proclaimed “Sane Squad.” There is not a day that goes by where I do not think of each and every one of you, “So much of me is made of what I’ve learned from you. You’ll be with me like a handprint on my heart. And now whatever way our stories end, I know you have rewritten mine by being my friend.” (“For Good” from Wicked)

I don’t know what the future holds, but for now? For now I’m going to work my ass off (or rather on?) so I can get back to celebrating being in the greatest love story of all time: one with life and all of it’s endless possibilities.

*cue the cheesy rom-com credits song*

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If you or anyone you know is struggling with an eating disorder, you are not alone and there are resources that can provide immense support. The first step to recovery is reaching out. 

NEDA

• Screening Tool

• Hotline Information 

Xo,

S

of supergirl & survivor's guilt.

Note: This post is unlike anything I’ve ever published before because it was never written with the intent to be shared. It’s actually a journal entry and not an “omg my blog is my journal” one, but a “this is my private journal kept under lock and key” one. I don’t know how to explain it, but over the past week I’ve just felt compelled, or rather pushed, to share? It’s still in it’s completely original form. It hasn’t gone through rigorous rounds of editing and second opinions like my typical posts do. It is extremely raw and rough. So here we are, me anxiously typing away, translating the scribbles from my journal and you wondering just what the hell you’re getting yourself into by clicking this link. Here goes nothing…

it’s past one-thirty a.m. as I’m writing this. thoughts of survivor’s guilt swirling and keeping me awake with the two year anniversary of kayla’s death looming. i can practically hear her yelling at me to get my head out of my ass and get some sleep because i have a full day of classes tomorrow. but despite the chamomile tea and xanax, it’s impossible. so here i am crying over my journal instead. 

with the recent improvements in my health and the promise of a future my guilt has only been increasing. it’s hard to wrap my head around why; why she had to be taken so young, why any of the people I’ve lost over the years had to be, why they all suffered so much, and why the hell I’m getting a second chance... of all people, why me?

i try to rationalize it in some sick, twisted way, attempting to find logic in the illogical, but always end up feeling even worse than before because here is the cold hard reality: i don’t deserve to be here any more than any of them. i tend to get overwhelmed and hung up on that fact. i put pressure on myself to work extra hard to overcompensate, to somehow be “deserving,” something i’ll never achieve because here is the other end of that cold hard reality: i don’t deserve to be here any less than they do. i do not have anything to prove. my worthiness comes simply from being a human being, it is inherent and can never be detracted from nor added to by the actions of others, even and especially when that action is an untimely death. 

i often feel like i “owe” them, those who i’ve lost. that because i’m getting this extra time they “should’ve” had, i must take full advantage of it or it’s an insult to them. that me sitting here working on this stupid fucking journal entry is a waste of time when i could be working something with the potential to “change the world.” but that kind of thinking is just as problematic as thinking there’s some reason i do or don’t “deserve” this gift of extra time. because if i’m constantly spending my time trying to earn something that’s inherently mine, something entirely un-earnable by nature, well that’s far more of a waste, isn’t it?

see, i don’t know if i believe that everything happens for a reason per say, but i do believe that it’s up to us to find a reason for everything that happens. to find the gratitude in the guilt. to find the purpose in the pain. to find the happiness in the hopelessness. to feel deeply without allowing the emotions to consume us entirely and prevent us from being fully present in each precious moment.

and so that’s just what I intend to do. 

life is messy and so damn chaotic, but that’s what makes it beautiful. that’s what makes it worth fighting for despite, hell, in spite of all the seemingly unending tragedy.

“but I am alive and I’ve made up my mind to live fearlessly running wild beneath the trees above a ground that’s solid at the core.” - lucy dacus, “map on a wall” 

It Takes A Village: 9 Ways To Be Supportive Of Eating Disorder Recovery

This post discusses mental health, specifically eating disorders, in a way that some might find triggering. Practice self care while reading.

It has been about two months since I came clean about my eating disorder, it still feels incredibly surreal. For years my eating disorder has been in control of my life making me suffer in shame and silence, but now this weight has been lifted off of my shoulders (poor word choice, but I can’t think of a better one).

I’ve been in awe of the amount of support I’ve received since sharing my story. That being said, with all of the support has come a great deal of inappropriate, probing questions and rude, dismissive, even triggering comments. I know that most of them don’t come from a place of ill will, but rather stem from ignorance. While that doesn’t make the remarks any less hurtful, it does reinforce the need for education on this issue.

My mom has always said, “It takes a village to raise a child.” I’m realizing that the same can be said of recovering from an eating disorder and you are all part of my village.

There are so many articles and videos out there along the lines of, “What Not To Say To A Recovery Warrior,” which include important information such as; no commenting on weight, no diet talk, no labeling foods “good” or “bad,” etc. I did not want to reinvent the wheel with this post, so I’m choosing to focus on action items to take (and others to avoid) as well as just general things to be aware of. I hope these tips are helpful to be the best village for anyone in your life struggling with an eating disorder not just me, however it is important to note that these are my thoughts and opinions and should be treated as such. Eating disorders are very individual experiences, something that is helpful to me could easily be triggering to someone else and vice versa.

1. The Diagnosis: There are many types of eating disorders that each come with their own awful, inaccurate stigmas; Anorexia = “just eat,” Bulimia = “ew gross purging,” EDNOS/OSFED = “not sick enough,” Binge Eating Disorder = “just stop eating,” etc. Because of this a lot of people choose not to share their specific diagnosis even if they are public with their eating disorder. Unless you are a medical professional, you are not entitled to this information and it is not appropriate to ask someone to disclose it. If someone does choose to share their diagnosis with you it is important to a) keep that information confidential and b) believe them despite any preconceived notions of what someone with that diagnosis is supposed to look or act like.

2. Symptoms & Behaviors: Just like any illness, eating disorders come with a set of symptoms and sometimes those symptoms present as behaviors. In a poem about recovery Blythe Baird said, “I don’t want to go into more detail because what if you mistake this poem for an instruction manual? I don’t know how to talk about the rabbit hole without accidentally inviting you to follow me down it.” It is nearly impossible to talk in detail about symptoms and behaviors without it turning into tip-giving, which is dangerous and counterproductive to recovery. That being said, there is so much shame and stigma that openly discussing them can be a form of advocacy, but only if done safely with the proper trigger warnings.

3. Personification: Within the eating disorder community diagnoses will often be personified, for example Anorexia is coined “Ana” while Bulimia is coined “Mia.” Typically this is used in the context of pro-eating disorder narrative almost making them sound like friends instead of a serious illness. However, others view personifying eating disorders as a way to make it easier to talk about in social settings. As I’m sure you can imagine, this is extremely controversial, so it is important to find out where the people in your life who are impacted stand on the issue before saying anything. Personally, I agree with both camps. I think it is extremely problematic to view Ana as a friend because “she” is most definitely not one (your friends don’t try to make you self destruct and if they do you need new friends), but I also know that it is a lot easier to say, “Ana is being a massive bitch to me today,” than it is to say, “I don’t trust myself to go to CVS alone.”

4. The Calorie Game: I am the calorie queen. I can look at a menu and calculate all of the calories with shocking ease and accuracy (ask me to calculate tip though and you’ll be waiting a while), but that does not mean I am your personal calorie counter. You will always lose when trying to stump me by playing “Guess The Calories” and more importantly you will almost always trigger me. Counting calories is an obsessive behavior (one of the few I feel comfortable discussing publicly) as a result of my eating disorder, the last thing I need is for anyone to feed (no pun intended) into that. So let’s just play “Name That Tune” or something else instead!

5. Food Guilt: A lot of people think they’re being helpful by “tricking” eating disorder patients into eating, but this is actually super harmful. Comments such as, “I won’t order anything to eat if you don’t,” are manipulative. If I don’t want to eat and am put into a position where I’m forced to I will end up turning to eating disorder behaviors whereas if I actively choose to eat, I won’t feel the need to “make up for it” in the same way, which is much healthier in the long run.

6. “Friendly” Food Reminders: Unless you have gotten explicit permission to do so, sending, “Did you eat today?” texts are not okay. I guarantee I am already beyond hyper aware of my food intake and if by some miracle I was not thinking about food in that moment, getting that message just bursts the bubble and drags me back to eating disorder reality.

7. Dinner Plans: I’ve always hated eating with people, but even more now that my eating disorder is public. It feels like I am constantly being watched and judged even if I’m not. This is something I’m working through and hopefully as I get further into recovery this will change, but for now plans involving food are not always the best idea. Going back to the concept of actively choosing to eat, if I suggest going to a meal then amazing, but if I feel I’m being pushed into a situation where someone could food guilt me or comment on my intake it just leads to massive anxiety and potentially unhealthy behaviors. There are plenty of activities people can do that don’t involve food; watching a movie, walking around the mall, going hiking, or my favorite thing - impromptu dance parties!

8. Trust Me: I won’t lie, in the past I have definitely tricked and manipulated people for the sake of my eating disorder, but that was before I was dedicated to recovery. Now, I am more likely to come to you and be honest when I do need help or I can’t handle something instead of hiding it. I know it is difficult, I know you’re worried, but it is up to you to trust me enough to reach out. This isn’t to say don’t check in on me! Please do, it is so appreciated! But rather, if I say that I am okay, trust that I am or if you don’t believe me, trust that I am talking to someone about it even if I’m not talking to you specifically.

9. On That Note… Know Your Place: This is really difficult to say and will likely offend a lot of people and for that I am so sorry. I said it takes a village to beat an eating disorder and I mean it, every person is crucial, however there are some more crucial than others. For example, there are certain comments my parents can make about my food habits and recovery journey that no one else can. There are jokes that other eating disorder patients can make which are hilarious, but are extremely hurtful and offensive if anyone else were to make them. There are certain questions my closest friends can ask about my health that I will always openly and honestly answer that I will either dodge or lie to anyone else asking. That’s just the reality. I’m learning that I do not owe anyone information and that I deserve to have boundaries. While I am now open with the fact that I have an eating disorder, there is still a lot I’m keeping out of the public and respecting my privacy is a huge part of supporting me.
   

My dad said something the other day that I thought was particularly poignant. He told me, “I don’t have to understand, I just have to support you.” And that is exactly what I hope you all take away from this post. You’re not expected to have all of the answers. You will screw up. You will accidentally say or do something triggering. It is inevitable, but it is not intentional and us eating disorder patients know that. What matters is that you’re trying and that truly means more than anything.

My next chapter of eating disorder treatment is going to be especially difficult, but I know that I’ll get through it because I’m lucky enough to have such a wonderful village cheering me on.

Xoxo,

S

Come As You Are: My Eating Disorder Story

This post discusses mental health, specifically eating disorders, in a way that some might find triggering. Practice self care while reading.

I’ve been taking a break of sorts since my surgery last April. I wrote so much about what it would be like after, how I’d get to get my life back, but then I realized I had absolutely no clue what that looked like.

Adding this surgery’s benefits to my current regiment of chemotherapeutic agents and blood thinners has made me relatively stable. Now I’m looking into an experimental treatment that could guarantee a future, something I quite honestly never believed would be possible.

I like to say that for the first time in years I’m in a committed relationship with life and just like in any new relationship, we’re still figuring each other out.

I realized that over the past few years my identity had become entirely centered on “Sick Chick” and while trying to live up to all of the expectations tied to that, I lost “Shira.”

I put so much pressure on myself to be perfect all of the time; to always have the answers, to be a role model, to be strong, to be beautiful -- things that, in my mind, I can’t live up to. I feel gross, like a hypocrite, constantly preaching about self love and body positivity yet hating myself so much. I spread myself too thin and felt that everyone had a right to a piece of me, but I gave away so many pieces I had none left over for myself.

I have an eating disorder. The lack of control and pressures in my life from various aspects, including my physical health and a bad relationship, led me to finding something I could control: food.

After dealing with this for over four years now, I’m finally actively working towards recovery -- I’ve fought too damn hard for life to let my eating disorder get in the way -- but it is a long road with many, many bumps. Most recently, I was told I need to prep for this experimental therapy by going on a new, extremely limiting diet in addition to keeping a strict workout schedule. Needless to say, this has been a massive trigger. I feel like I should be able to simply “handle” it, but just like I can’t control the fact that my blood doesn’t clot properly, I can’t control the intrusive thoughts.

A couple of weeks ago, my therapist brought up the possibility of needing to go inpatient. As scary as that was to hear, it put into perspective just how serious my eating disorder has become and I can’t continue to pretend I’m okay. My health has taken so much from me over the years, but I’ve never allowed it to take my voice until my eating disorder diagnosis. And I’m learning that staying silent just feeds the shame cycle, whereas speaking out has the potential to feed hope.

I used to feel pressure to share my story, to “be an inspiration,” but now I’m sharing for the opposite reason. I’m sharing to show that you never know what’s going on behind the facade of social media. I’m sharing to show that I’m not perfect, hell, no one is, and I’m still figuring things out. I’m also sharing as an explanation.

The reality is, I don’t owe anyone (besides myself) anything, but this community has been a part of my life since the beginning of my journey nearly ten years ago. You’ve all watched me grow up, you’ve laughed and cried with me, and you’ve been my biggest cheerleaders. You’ve trusted me with your deepest fears and hopes. For that, I’m beyond grateful and honored. However, I am realizing that in order to be there for all of you in the way I want to be, I have to start prioritizing my own self care. Like the stewardesses on airplanes always say, “Put on your own mask first before assisting others.”

I want to be more authentic. I want to be Shira, not just “Sick Chick.”

I want to be the girl that fucks up. I want to be the girl who sits in bed watching trash reality TV for hours in a stained t-shirt with greasy hair. I want to be the girl who uses avoidance as a primary coping mechanism. I want to be the girl who is uncomfortable with the phrase, “I love you.” I want to be the girl who is stubborn as all hell and has a hard time admitting when she’s wrong. I want to be the girl who enjoys late night drives down Pacific Coast Highway listening to Vance Joy’s “Nation of Two” on repeat. I want to be the girl who proudly proclaims C’s get degrees. I want to be the girl who can quote practically every cheesy 90’s rom-com. I want to be the girl finding faith and loving every damn moment of it.

I don’t want to be the girl constantly walking on eggshells. I don’t want to be the girl so focused on everyone else’s happiness instead of her own. I don’t want to be the girl always waiting for the other shoe to drop. I don’t want to be the girl who cringes every time someone tells her she’s beautiful or is “body positive goals af.” I don’t want to be the girl who feels like she can never say no. I don’t want to be the girl obsessing over social media appearances and engagement. I don’t want to be the girl who feels like a fraud 24/7. I don’t want to be the girl living up to everyone else’s expectations, while never even knowing her own.

I get to have a future, and not simply a future, but a beautiful, bright potentially healthy one. And part of making that a reality is coming clean and owning myself. Everything I listed about the girl I want to be, even the things that need improvement --especially those --  are the things that make me, me.

And you know what? I’m learning that I actually like me a lot. And I hope y’all will too.

Sharing this post is one of the hardest things I have ever done (and I’ve re-learned how to walk five times, so that’s saying something). I’m scared to admit my brokenness, and not just admit it, but put it on full display for the world to see.  I’m scared I will be taken less seriously and viewed as fragile. I’m scared I will be a disappointment. I’m scared that the knowledge of my diagnosis and its implications will offend my Sick Chicks Sisters who would give anything for a functioning GI system and adequate nutrition. I’m scared that the friends and family who are hearing this information for the first time right now will be angry at me for keeping it a secret. I’m scared that people will question the validity of my physical illness because of my mental illness. I’m scared that people will stop viewing me as a positive role model.

But I can’t live in fear anymore, so today I take the first step: I say, “I have an eating disorder.” And for once I don’t feel ashamed. I feel empowered. 

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Image Credit: Pintrest

Thank you to Kendall for being my person. Thank you to Amy for always reminding me that I’m worth it. Thank you to Sarah for making me feel less alone. Thank you to my parents for pushing me to reclaim my body as my own. Thank you to the Rat Pack & Sister Wife Squad for helping me learn to prioritize my mental health. Thank you to Savannah for always letting me word vomit without any guilt. Thank you to Ally for cake and boba by the ocean. Thank you to my whole support system for keeping me going.

If you or anyone you know is struggling with an eating disorder you are not alone and there are resources that can provide immense support. The first step to recovery is reaching out:

NEDA

• Screening Tool

• Hotline Information

Xoxo,

Shira

I'm Going To Get My Life Back

Tears filling my eyes, I turned to my mom and said, "Someone is finally going to help me. I'm going to get my life back."

As I'm writing this post, one week after one of the biggest doctor appointments of my life, I still haven't fully processed these emotions: shock, relief, and sheer joy. After approximately two years of fighting, on April 24th I will be having an endometrial ablation. 

I've learned over the years of being sick that I have no control over the quantity of my life, however I do over the quality and my period has been threatening both. I withdrew from my spring semester of freshman year partially because I couldn't continue to miss weeks of classes per month. I have to choose between going to the hospital to get transfusions or taking meds that will slow the bleeding, but cause serious neurovascular events. PMS already does a number on a girl's mood, but for me its made even worse by the intense anxiety caused by the knowledge of what's to come: a five day long scene from a Quentin Tarantino movie, I wish I were kidding. 

I'm lucky to have such strong, supportive female physicians on my side. So as much as this is a life-update post, it is also a thank you note to them. Because of the ignorant and thoughtless remarks made by other doctors (mostly men) who do not see me as a patient who has been greatly suffering, but instead as simply a vessel for reproduction, I started to give up hope of ever getting help. And, being completely honest, I began to feel like horrible person for not wanting to just accept that as my destiny. (Stay tuned for an upcoming post on the problematic way society views womanhood in relation to pregnancy - news flash, my worth as a woman is not tied to my ability to have children!!) Hearing these four wonderful physicians - my hematologist and her fellow, my endocrinologist, and lastly my gynecologist/surgeon - assure me that I am in fact doing what's best, that this is a last resort and that I have done everything in my power to avoid the unavoidable has been so validating. 

As I've discussed in my previous posts about my fight for adequate reproductive care, "You Never Know What Could Happen in Ten Years" and "But That'll Make It Harder To Find A Husband," this was by no means an easy decision, but the right choices never are. And in the end, this isn't really a choice anymore, it's a necessary, potentially life saving surgery. 

So, here's to the next chapter in my journey, the one where I get my life back and regain power over periods. 

Xo,

Sick Chick 

The One About Mary Jane

It's time to talk about my good bud, marijuana.

I've always been open about my use of the medication, and I did say medication because CBD oil is one of the most valuable treatments in my regime. Over the summer I took a turn for the worst. I was having multiple seizures a week, became wheel chair bound, was in a great deal of pain, and so nauseous that I had a hard time eating. I'm not going to say that marijuana fixed me, but about two weeks after starting to use a CBD oil specifically for seizures my episodes decreased. I had an appetite again and was even able to lower my dosage of narcotics I had been taking. The combination of starting CBD oil along with the chemotherapeutic medication Gleevec got me to a place where I was able to go to college across the country and live independently.

My story is not unique. There are many other patients with varying illnesses who can attest to the power of this flower. (I know, it's not technically a flower, but the rhyme was just begging to be used.) However, not every patient who needs medical marijuana is as privileged as I am.

I'm lucky to be from a state where both medicinal and recreational, use has been legalized in addition to being a constituent of  a supportive Congressman. During Rare Disease Week on Capitol Hill I was able to meet with Representative Roranbacher to discuss a myriad of healthcare issues and medical marijuana came up. I might not agree with all of his politics, but I respect that despite receiving a great deal of criticism from his party, he continues to be a strong advocate on behalf of marijuana rights along with increased research and access to affordable treatment options. 

 Marijuana is considered a Schedule I drug by the DEA, which is in the same category as ecstasy and heroin. A ridiculous standing especially considering studies have shown that marijuana is actually less of an addictive substance than many narcotics. Until marijuana gets reclassified, it being legal for medicinal use means nothing. Like any other medication, marijuana is expensive. If it can be moved down to a Schedule II, it can be studied under the FDA, proven to be safe and effective, and have the potential to be covered under insurance. 

While having legalization in 29 states and D.C. shows steps in the right direction we still have a long way to go for true progress. No matter your stance on recreational marijuana, the benefits of medicinal marijuana cannot be ignored. 

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

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

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

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.

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 

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

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 

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

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

Happy International Women's Day.

Xoxo,

Sick Chick

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. 

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 

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 

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

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 

#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

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