Talk Medical To Me (Part 1)

Sometimes it's hard to remember not everyone lives in the medical world. I'm guilty of dropping a, "Oh yeah I totally just shot up in LAX before my flight" into everyday conversation, and I forget other people don't realize I'm not talking about heroin, I'm just talking about fondaparinux...and most people don't know what that is either. 

So, I've decided I'm going to compile a dictionary of sorts. All of the terms you should know when hanging out with a sick chick. As the title says, this is only part one. If I leave anything out please feel free to email me or message me on any of my social media accounts, which I'll leave at the bottom of this post! I'll give credit to everyone for lingo and definitions :) 

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Chronic Illness - Meaning I'm not simply going to "get well soon", this is always going to be a part of my life. There may be better days or worse days, but it will always be here.

Disability - To quote the ADA, "a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history of such impairments, or a person who is perceived by others as having such an impairment". You can see the definition isn't clearcut. You won't always be able to look at a person and determine their disability, so it's important not to judge. Some disabilities are invisible, but that doesn't make them any less real. 

Comorbidities - Diseases that are friends with other diseases and like to throw ragers in the same person...it's super cool and fun when you happen to be that person...

Trigger Event - Sometimes a person can have a genetic disease without knowing, either the symptoms are mild or it's dormant waiting to be activated. It takes a trigger event, such as an injury or serious illness, that stresses one's system and in turn sets off the disease. If you have a predisposition to certain diseases a trigger event is also applicable. 

Tubies - people who are too cool to need food, so they get nutrition through a either an NJ, ND, NG, G, GJ, or J Tube. 

Spoonies - The chronic illness community, aka, the best people you'll ever meet. Well, I might be bit biased. The name comes from The Spoon Theory, which is another definition itself, so I just linked in the original blog post.

Online Community - No, they aren't sketchy. Sometimes they're the only people we can talk to because despite being across the country, they're the only people who understand us. Generally they aren't creepers. Generally. 

Off Label Medication - Most of the medication I take. It's approved for other diseases, but just not mine, yet is known to help my disease(s). So, doctors will prescribe it for me, but insurance won't always cover it since there's "no known indication" for my disease(s). On this note - check out OPEN Act and urge your Senators to pass it because it would make Off Label Medication, On Label for rare diseases, like some of mine - basically it's super important. 

Pretty Ill - A consequence of invisible illness, we don't look sick. In fact sometimes we look damn good. Don't judge a book by its cover, what you see is not the reality when it comes to invisible illness. I know I may have just posted a super pretty picture on Instagram, but I also may have just gotten out of the hospital. Doesn't make either one any less true or real. 

Central Line - For treatment frequent infusions of various things (fluids, blood, antibiotics, etc.) are necessary. It's a pain to constantly get poked for an IV and a lot of us are really hard to stick, so it's sometimes easier to put in either a PICC Line, PORT, or Broviac to name a few. These are lines that stay in 24/7 and can be accessed at any time, they go directly to your chest - even a PICC Line, which is accessed at your arm. 

Care Packages - Things people send you in the hospital. Most people send balloons, that's nice and all, it really is the thought that counts! But, when you're in the hospital all you want is some dry shampoo, lotion that smells pretty, and nail polish. Oh and fuzzy socks! Lots and lots of fuzzy socks! 

Side Effects - There's a price to everything, and even the most beneficial medications can come with a huge cost. So yes, while my meds make some things better, they also make other things worse. But, it's a trade off that many of us have to take. Some side effects can be; dizziness, nausea, weight gain, weight loss, hair loss, acne, moodiness, bleeding risk, headaches, etc. 

Paradoxical Effect - When you take a medication and you get the opposite effect. For example, if you're given benadryl, which is supposed to make you drowsy, but instead you're wired the entire night. You could see how this would be a problem with certain medications, and there's no way of predicting a paradoxical response until you take the medication.

Contraindicated - When a treatment is inadvisable because of a condition or another treatment. For example, using heparin (a blood thinner) for me for a blood clot is contraindicated because it almost killed me. 

Champagne Problems - People living with chronic illness/disability/rare disease/mental illness don't have the luxury of living with champagne problems. Sometimes you need to be aware of this, not saying to sensor yourself around me or anyone else, but complaining about needing to lose weight when you're only a size 2 in front of a tubie friend of mine who would give anything to be able to chew and digest food normally is a bit insensitive. 

Flare Up - Just as you thought your symptoms were calming down, one acts up and the rest follow, often causing a crash. 

Brain Fog - This I will have to wait and write in Part 2 because I am currently...what's that word? Oh right, experiencing.

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So, here's my "Sick Chickitionary" so far - let me know what you all think and what you'd like me to add! 

Email me - contact.sickchick@gmail.com

Or, find me on Social Media and message me there!

Twitter - @sick_chicks

Facebook - facebook.com/thesickchicks

Instagram - @shirastrongin 

Xoxo,

Sick Chick

Suffering Is Subjective

"Well, it could be worse." 

I can't tell you how many times I've had people say this about me. Either from healthy/able bodied people or from other sick/disabled people. Illness shaming is a very real and harmful phenomenon. Why are we stuck justifying our pain to others? 

I've gotten a lot of messages recently from people saying how they don't believe they deserve to complain since they don't have "X Condition" (which they think of as being much worse). Well, I'm a firm believer in therapeutic complaining. It's better to get it out somehow rather than keep it bottled up inside. I believe you all have every right to complain even if you don't have "X Condition". 

Suffering is subjective. Pain is not universal. Some one else's 7 might be my 4. Does that make what they feel any less horrible or real? No. Just different. How we experience a phenomenon is not universal. I may have a 7 pain, but act like I am experiencing a 4 for a variety of reasons such as distraction, tolerance build up, or I'm just awesome at hiding it. Does that mean my pain is not a 7 though? Does that mean I actually feel good? No. Does that mean people should compare how I experience my 7 to how someone else experiences their 7? No. Because everyone is different. Suffering is subjective. 

One of my favorite books is The Perks of Being a Wallflower. There are just so many quotable moments in it, including this one, "And if somebody else has it much worse, that doesn't really change the fact that you have what you have. Good and bad." To me this really sums it up.

Getting into the compare game is a slippery slope with no winner. 

Xoxo,

Sick Chick 

Galentine's Day

AKA the most sacred day of the whole year. 

Galentine's Day is February 13th and is ladies celebrating ladies. It's about the importance of female empowerment and friendships. Plus, it helps that Galentine's Day was started by Leslie Knope from "Parks and Rec". 

The Sick Chick Network is basically an everyday celebration of Galentine's Day. I have so many strong and amazing girl friends, some of them I've met through this network. I'm so appreciative for the wonderful community we've been able to form. 

Here are some ideas on ways to celebrate!

1. Have a "Parks and Rec" marathon with your girl friends!
2. Bake! Chocolate is always the answer. So are waffles and milkshakes. Oh and cookies. And cupcakes. Basically dessert. 
3. Dance and sing to Taylor Swift at the top of your lungs like you're feeling 22 
4. Watch girl power movies here are some examples - "Legally Blonde", "The Heat", "Sisters", "Miss Congeniality"
5. Watch violent movies (you'd be surprised how good for the soul these are approaching Valentine's Day) 
6. Get some little gifts to show appreciation for your friends, this is one of my favorite gift stores 

In the immortal words of Leslie Knope, "Uteruses before duderuses." Happy Galentine's Day!

Xoxo,

Sick Chick 

Because. That'd Be Boring.

The other day my mom said to me jokingly, "Normal people tour colleges their junior year, not hospitals, why can't you be like normal people?" I, of course, had a snarky response, "Because. That'd be boring." But, after a while of thought I realized just how true that statement is. 

I hate the expectation of normalcy. What even is normal? A standard the media created to make us feel inferior about our lives. Just because I'm not the "cheerleader-prom-queen obsessed with boys and partying" that every high school TV show and movie says I should be, doesn't mean I'm abnormal. It just means my normal is different.  

My normal is not feeling well. My normal is working incredibly hard just to keep up. My normal is constantly being disappointed by the state of my health. My normal is getting to go on the wildest adventures (like my quest to find Wally and DC in February). My normal is meeting the coolest, most inspirational people (shoutout to my WAM Fam). My normal is writing for hours on and hours on end (well, you get to see some of that). But, I wouldn't trade it for the world. Because. That'd be boring.

Something I've learned along the way: normal is abnormal. We're all unique and we should celebrate that instead of trying to live up to this unachievable standard set by media. My life may not be perfect or "normal", but it is crazy, beautiful, and certainly not boring. 

Xoxo, 

Sick Chick 

Let It Burn

I think it's time to let go of some toxicity in my life. As you can tell from my last post - there's a fair amount hahaha. So, as one of the commenters on Facebook suggested, I'm going to write it down and then let it burn. I'm having a bonfire/Let It Burn party! I don't know who I'm going to find that trusts me with fire, but you know minor details. Writing is therapy for me, but setting stuff on fire sounds pretty good too. So, me and some friends are going to write down the toxic things that are holding us back and then dump them into the fire. There will be music - let's be real, it's kind of a Taylor Swift moment here, so I've got to play it up - food, and maybe some dancing. Just the perfect way to let the things that we can't change go. 

I'd like to address some comments on my last post:

I know B's intent was not to injure me as severely as she did, but she was trying to embarrass me (long story), and didn't realize what would happen or think of the consequences. It was a rule that you don't touch or stretch other kids in class, and she broke that rule. Also, there was supposed to be adult supervision in this dance class, but the teacher was in the bathroom texting and could have prevented this from happening too. 

I don't blame her for my genetic illnesses. My spine surgeries and my pain syndrome can be linked back to that injury. But, genetics are genetics, can't exactly change those (don't you wish though?). This injury however was my trigger event (I will be doing a later post specifying what trigger events are) and without it I could've had a lot more healthy years or my problems in the future would have been much more minor. 

I didn't send her the link. I think seeing her with my family member dragged up old wounds and made them feel fresh again. It was extremely therapeutic to get this out there and now it's just that, out there, not bottled up inside. 

Finally, something important to me is being open and honest on here. Sometimes stuff from the past gets dragged up and sometimes I'm in the hospital, sometimes I'm dealing with stress from school and sometimes I'm advocating for change. This is my story, my voice, and my truth. I'm not going to censor myself.

I want to thank you for being a supportive community. I want you all to know that I'm always here for you, I have an open email/message policy with my readers. If you ever want to talk, vent, whatever - I'm here. And, please join our Facebook community and have the support of other sick chicks because no one should go through this alone. 

Xoxo,

Sick Chick

Dear "B"

Most of you are unfamiliar with my story and how I became sick. Well, you're about to become a lot more familiar with it. A few weeks before my 10th birthday my best friend at the time injured my back pretty severely in a dance class. It was my "trigger event". That was the end of my healthy life as I knew it. And that friendship...she never reached out. All of this time, I've been living with the consequences of her mistake. I've dreamed about telling her exactly what happened for so long.

Now something happened that pushed me over the edge. A family member of mine, who knows how this girl ("B") hurt me, has become good friends with "B". Seeing these interactions on social media have made all of the horrible memories come flooding back.  But I realized it's time I get some guts and say my piece. It's time I get closure. 

So here it goes: This is to you "B" (super convenient that her first name starts with that letter - right?)

"Memories are flooding me as I write this. Playing in your backyard. Sleepovers. Dance Classes. But then something happened. You hurt me.

No, I'm not talking about my petty pre-teen feelings. I'm talking physically hurt me. So badly that I've had two spine surgeries and a neurovascular pain syndrome that is regarded by the national pain scale as the worst pain a person can feel. You. My "best friend". Did that to me.

See, I was sick. I have a few (okay more than a few) rare genetic diseases. No one, including me knew at the time of the injury. But, without this injury I would have had more years of ignorant bliss. More healthy years. But instead I've gotten to spend the last almost seven years in and out of the hospital. Instead I've had to relearn how to walk six times. Instead I've almost died more times than I can count. Instead I had two spine surgeries. And you never kept in touch. You never checked in. You didn't care. My "best friend". 

Thank you. Because I've thrived in spite. I have realized my strength. I've realized the power of my voice. I've become an advocate. I've won national awards. I've had my writing published in Forbes and other media venues. I've lobbied Congress. 

But, I'll never be able to dance again. I can't go to regular high school - I'm too sick. I'll never be able to breathe properly. I'll always be in pain. I've missed out on so many normal teenage experiences. I missed out on maximizing my healthy years. 

I have two huge scars as permanent reminders of you. It only seems fair I return the favor. So, here you go - a permanent reminder. Because it isn't fair that I alone carry the weight of something that could have been prevented.  Something my "best friend" did to me. Maybe you won't read this. Maybe you'll brush it off. Maybe you won't even remember - god how I envy you for even that possible luxury. 

But this isn't about you. This is about me. And I deserve a sincere apology. I deserve respect. I deserve closure. I deserved this so long ago it's ridiculous. I deserved support and a good friend, one who cared. I deserved better than what happened to me." 

So, now that I've gotten that off of my chest...quick poll: how many readers think I should send this link to "B" and how many think I should leave well enough alone and as the song says "let it go"? Also wondering if any of you have had similar experiences and what you've done. 

Xoxo,

Sick Chick 

ABC

A is for anemia that brings new meaning to being fair

B is for Benadryl, just bow down  

C is for the clots that didn’t get the memo

D is for the Dysautonomia that spellcheck doesn’t recognize

E is for Ehlers Danlos Syndrome that makes my joints dislocate  

F is for the “funny” things my doctors say

G is for my Girl Parts, which are okay (inside joke – don’t ask)

H is for the hospital aka my home away from home 

I is for irony, there’s just too damn much

J is for the jokes my body likes to play

K is for my kidney stones that just need to go away  

L is for laughing, because that’s all we can do

M is for my mast cells that are on the offense 24/7

N is for Netflix and Chill, as in literally

O is for oxymoron, what my body is – emphasis on the moron

P is for the PICC lines that didn't work out so well 

Q is for questions, there’s just too damn many

R is Ritalin, because it keeps me upright

S is for my screwed up spine

T is for how Tachy I am, especially this time of year

U is for UTI, which is an “I” problem

V is for Verapomil, which makes me less tachy

W is for all of the wrong diagnoses I’ve gotten

X is for the X-Rays – it’s the inside that counts right?

Y is for yucky tasting meds, you’d think they’d figure this out by now

Z is for Zofran, my personal drug of choice, it’s seriously the best

And that’s my chronic illness ABC’s – I’d love to see yours! Tag me in posts, I like to see what you guys are doing in the community, and follow me on my social media accounts.

Facebook: facebook.com/thesickchiks  

Twitter: @sick_chicks

Instagram: @shirastrongin

Also want to remind people we have a closed Sick Chick Facebook Support Group for those of you who want to participate. Message me and I’ll send you the link to request to join :)

Xoxo,

Sick Chick 

Dear Able Bodied People,

Dear Able Bodied People

This might come as a shock, but I don’t hate you.

Dear Able Bodied People

Don’t talk down to me. Don’t use the “cutesy baby voice” you think I’ll appreciate. I don’t appreciate it. I know you’re trying to be nice, but it's an insult to my intelligence.  

Dear Able Bodied People

Please. Don’t pity me. You don’t even know me, but as you hear “my story” or see my scars...

There’s no reason to pity me though, that’s what you don’t seem to understand.

Dear Able Bodied People

I’m not your token. Being friends with me or working with me does not make you a good person. Make sure your heart is in the right place. 

No, I’m not paranoid. We leave in a crazy world where people use each other for their own benefit. When you’re a minority you’re more subjected to that.

Dear Able Bodied People

Stop using the world cripple as an insult or to be funny. It isn’t. It’s plain wrong.

Dear Able Bodied People

See past. My disability is a large part of my identity. But I am more. I am a writer. A feminist. An average girl obsessed with Dirty Dancing.

Dear Able Bodied People

We’re not so different. See that. We have similar hopes, dreams, goals, and morals. We’re the same on the inside (in the metaphorical sense strictly, sorry couldn’t resist). That’s what counts though.

Dear Able Bodied People

You're not always right. Neither am I. But there is some middle ground where we can understand each other. 

Dear Able Bodied People

I don’t hate you. I hate the entitlement and ignorance. 

Dear People

Let's be the change. 

Xoxo,

Sick Chick 

(Im)Perfect

Perfect. What is it? A social construct. Something the media has developed as the gold standard.

"If only I was thinner" "If only I was taller" If only I didn't have these scars" "If only I had tanner skin"                                                                                                                          ...I'd be perfect.                                                                                                                         If only. 

Trying to live up to this non-existent ideal forces us to live in a world of "if only".                   Miserable. Impossible. 

Imperfect. Undesirable. Synonyms as far as society is concerned. Because if something isn't perfect it's inherently wrong. Because if something isn't perfect why would we want it?

But, it's the imperfections that tell a story. It's the imperfections that give character. It's the imperfections that make someone interesting. It's the imperfections that make some beautiful. It's the imperfections that make someone human. 

Perfect. Is generic. Perfect. Is fake. Perfect. Is undesirable. 

I am a wholly imperfect being.                                                                                                     And so are all of you.  

Sorry

"I'm sorry."

The two most damaging words in the English language. Who are you to be sorry? Sorry for me. You don't even know me. Yet. You're still. Sorry. Sorry for me. 

Why?

Why are you apologizing for my existence? Why are you making me feel more worthless than I already do? Why are you making it harder for me to look in the mirror? Why are you making me feel like a burden on society?

No. I'm sorry. 

I'm sorry for you. I'm sorry for your ignorance. I'm sorry that you can't see past my disability. Beneath my costume.

Because you might not see it, but I am a superhero. I fight invisible bad guys everyday and I look damn good doing it. 

But you don't care. You don't take the time to get to know my super strength because you saw me out of costume once. 

And you're sorry. 

Get By With a Little Help From My Friends

I have the best friends in the world, hands down. My friends make me laugh when I'm about to cry, they're there for me in my darkest moments, and they're there for me when I want to wage war on bad doctors. My friends make being in the hospital a better experience, at times even fun, which I know sounds impossible. 

This hospital stay one of my good friends, Kayla, is in the unit next to me and we've been inseparable. Kayla even has a sign on her door telling nurses to come looking for her in my room if she isn't her own. I was so upset that I had to come back to the hospital (let's be real no one wants to spend their free time here), but I knew Kayla would be here too. She's become my partner in crime. I've kind of corrupted her...whoops...

Being in the hospital together is a bonding experience like no other. You have people poking and prodding at you. You have people asking you all kinds of embarrassing questions about poop, pee, and your "girl parts" - inside joke, don't ask. At some point it just doesn't phase you, and you realize you've lost all sense of modesty and pride. This is why you form a special bond with people going through similar experiences. We're able to laugh at situations healthy people wouldn't be able to.  

I mean who else can you do hospital dares with? Who else can you get in baby cages (hospital cribs) with? Who else realizes dry shampoo and moisturizer make much better gifts than balloons? Who else will play Crazy Eight's until you actually go crazy? Who else will make pinky promises about "no more hospital play dates"? Who else will throw hospital ragers with TSwift? Who else will cuddle with you when it's been a week since you last showered (real talk)? Who else will help you achieve your dreams of (IV) pole dancing? 

Sick Chicks will do all of this and more. I'm forever thankful for the Sick Chicks in my life.

Shoutouts to: Ellie my fellow IV pole dancer who basically lived at the hospital with me, Laura who helped keep me distracted and made sure I didn't get lost, and Savannah who drove over two hours to see me and screamed at the ceiling with me. Thanks for everything - love you all! 

Xoxo, 

Sick Chick 

Hospital How To's

So, as you know I've been in the hospital (getting out tomorrow!!), this is not my first rodeo though, and I've picked up some tips and tricks along the way. I thought it would be good to share some, after all sharing is caring. I hope you never have to use them, but just in case...

1.     Bring your own pillows and blankets from home

·      it’ll make you feel much more comfortable

2.     Bring your medication list

·      this just saves time

3.     Bring a bag of your medication from home

·      pharmacy doesn’t always have your exact medication , so it’s safer to bring your own so pharmacy can dispense it

4.     Bring your own toothbrush, face wash, etc.

·      yes, the hospital does have this stuff, but it isn’t as nice as your own. also I’d recommend bringing face towels, yes the hospital has some, but they’re, well, exfoliating…

5.     Don’t trust the hospital food

·      just don’t do it

6.     If you can – try to bring treats to your nurses

·      yes, it’s bribery, no we aren’t above bribery

7.     If there’s a nurse you particularly connect with don’t be afraid to ask for him/her again

·      your nurse is with you the most, and make all of the difference

8.     FUZZY SOCKS

·      hospital floors are disgusting

9.      You’re in the hospital so treat yo’ self  

·      whether it’s food, clothes, movies

10.  You’re never too old for stuffed animals

·      I’m 16 and I have 2 here with me, one is Mike Wazowski from Monsters Inc. #NoShame

11. Have friends come visit

·      you’d be surprised how far friends are willing to come to see you

12. Don’t look in mirrors

·      it’s a hospital no one looks their best, it’s okay just accept it, and take a lot of ugly selfies

13. Laughter is the best medicine

·      it’s even better than pain meds

14. Don’t wear the hospital gown

·      no one wants to see your butt, just bring cozy pajamas.

15.  Know when to lie

·      there are certain things you have to do to get out of the hospital (peeing, pooping, the works) sometimes you just can’t do those things in a timely manner and that’s what is keeping you from being discharged, so just lie.

16. Stick to your guns

·      You know your body, so fight for what you feel/know is right for you. 

I'm sure you all have some as well, please share them in the comments below. I want to hear what you guys have to say!

Xoxo,

Sick Chick 

Response: From A Fed Up Disabled Teen

When I first wrote my ableist post it was just for myself, my own little musings. Then I realized that even though it is controversial my opinion needs to be heard and I have this platform, so I posted it. I had no idea it would make this kind of an impact.

My words were not meant to represent the entire disability community. My opinion is just that: my opinion. The post was signed “- from a fed up disabled teen”. I know there were parts where I used “we” and “us”, but it’s because I feel disabled people as a whole are being used. I have had many interactions with both friends and strangers from the disability community who share this opinion. So while I’m not trying to speak for the whole community or put words in anyone’s mouth, there are quite a few of us that do feel this way. However, I acknowledge and respect that not everyone is of the same opinion.  

It’s all about intentions. I’m sure there are people out there who are being genuine. At the same time though, there are those who use disabled people as some kind of a trophy. And the latter are whom my post is directed at. Of course we can’t always know the intentions of people. I get that. I think a possible solution is not giving people such praise simply because they treat a disabled person like a person. I’m not trying to tell people what to do, I’m trying to share my perspective and make people aware of something they might not otherwise be. Ask a disabled person out if you want to. Vote a disabled person for king/queen if you want to. But think about the intent and reason behind what you’re doing is what I ask of you, and be sure that you’re doing it for the right reasons.

We want to be treated like everyone else. The person who got asked to the dance; was he/she included during the rest of the school year? We want your kindness everyday, not just when it’s beneficial to you. Disabled people don’t need your saving or your pity. Don’t forget about us during the everyday moments – that is what life is made up of. You may not realize how significant those everyday moments are, but we do.  

People got kind of confused about my use of the phrase “inspiration porn”. The idea originally stemmed from a Ted Talk by Stella Young. The main idea is that the disabled are not inspirational because we’re disabled. We didn’t choose to be disabled. If we are an inspiration, it should be for our accomplishments. I think this is an important concept to understand when talking about ableism. It’s also a big part of where my opinion stems from.

Lastly, I’ve gotten some horribly, vulgar responses to my post. People have told me that I’m going to go to hell. I’ve been told to kill myself. I’ve been called inhumane and a bitch. Many of these responses are from adults. I understand this is controversial and not everyone will agree with me. That is okay, but cyerbullying is not. I’m happy that this sparked such passionate discussions, and hope it continues to do so as long as people remain civil and respectful of our right to disagree on both sides. Being intolerant and disrespectful isn’t effective and will get us nowhere.

I’m not going to stop writing. I’m not going to stop sharing my opinion. I’m not going to stop being an advocate.

Xoxo,

Sick Chick 

I Look Sick In My Blue Genes

Hey! Longtime no write – am I right? Bad pun…won’t ever do that again. Anyway, sorry about that! Health stuff – don’t you just love it? So much has happened since my last blog post. I probably won’t be able to fit everything into one post, but I’m going to try.

So I went to the Global Genes 2015 Summit and Gala where I had the incredible honor of receiving the 2015 RARE Champion of Hope – Teen Advocate Award. It was such a special night and I will tell you all about it (promise), but first I’m going to back it up to the day before.

When I first found out I had received the award I met with Global Genes founder and CEO Nicole Boice. – Side note about Nicole; she is such a great ally to the rare disease community. We’re so lucky to have this kick ass woman on our side. She’s incredibly generous and so kind. – While we were talking I shared with her my desire for there to be a way to bring all of the great youth advocates I’ve met on my “journey” (ugh I hate that word, but when it works, it works) together to make some positive change. As youths we are our own best advocates, we know our bodies, so it’s our job to speak up – shout if we have to. Nicole wanted to help in any way possible and suggested we have this meeting during the Summit. Nicole put me in touch with other awesome fighters on the Global Genes team – big shout out to Carrie and Kym for all of the hard work they put into this event – and we made this conference a reality.

A group of nine young adults met including myself, we even had two Skype in, to form We Are More. And if I tell you all about We Are More I will need a “Part 1” and “Part 2”, maybe even a “Part 3”, for this post, but I will be putting a spotlight up about it in the next day or two. I will tell you some basics so you can understand how cool this meeting was! We had multiple disease representation, it was inspiring to see how passionate everyone was about advocacy – it refueled some of my own fire.

I’d like to spend some time talking about one specific person there. Madi Vanstone. Madi is the 2015 RARE Champion of Hope – International Teen Advocate. She’s also my sister. Madi and I bonded over our obsession with reality TV – quick poll who thinks Brooks from “Real Housewives of Orange County” actually has cancer? – I’m so excited to get to continue working with her on We Are More. I also see some trips to Canada for horse back riding in my future and some trips to the OC for surfing in Madi’s.  

Now onto Saturday night’s Gala! So much to talk about. Seriously. So. Much. The night started off with Madi and I walking the Blue Carpet together. That was so intimidating, but also super cool. Then we hung out in the cocktail hour for a while before going into the room where the gala was being held. It was absolutely gorgeous. I’m super happy because my parents came (obviously), along with two very close friends of mine, two of my medical world older sisters/children…it’s a long story, family friends who have known me since I was in diapers, and even my doctor came to support me.

Cimorelli kicked off the night with an awesome performance, I suggest you go check it out – Global Genes uploaded a video of it. The girls are so sweet!! I actually loved their performance and meeting them so much that my friend and I got tickets to their show in Santa Ana a couple of days after the Gala. Definitely go like their Facebook page and follow their Twitter/Instagram @Cimorelliband

Shortly into the Gala it was my turn to be presented with my award. I was taken back stage where I met Pretty Little Liars and Ned’s Declassified School Survival Guide actress Lindsey Shaw who presented my award. She gave me the biggest hug! Well, hugs…there were multiple of them. Lindsey talked to me a lot before going on to present my award. She was so nice and it was so weird to see her in awe of me. When she introduced me there were a lot of unforgettable moments, but the most unforgettable for me was when she called me a badass “I mean, WTF man”. I gave my acceptance speech, but I was totally freaking out that I would drop the award the entire time. I’m just kind of a klutz…

Global Genes uploaded videos from the Gala and if you want you can see my speech and Lindsey’s introduction! 

I’m not going to recount the entire night for you, but I am going to go through a few stand out moments. Such as Ben Lou’s, well everything. Ben Lou has Spinal Muscular Atrophy (SMA) and he won the U.S. Junior Team’s only gold medal in the 2014 World Math Team Championships (WMTC) when he was 11 – I’m seriously thinking of reaching out to him for math help, and I’m a junior in high school. He went to China for the WMTC, and while he was there he advocated for disability rights. Like me Ben is made of titanium – screwed up for life! After receiving his award Ben sang “Titanium” with American Idol winner, Kris Allen. I don’t think there was a dry eye in the audience. Go follow Ben’s Instagram account: team.ben_ for more on Ben

I also got to meet Travis Flores, a super cool philanthropist, actor, and writer who has Cystic Fibrosis and recently underwent a double lung transplant. Follow him on Instagram/Twitter @travisflores, and like his Facebook page! He’s a great advocate for rare disease and an example of not letting his disease define him. I’m looking forward to working with him more in the future.

Finally towards the end of the night I met a woman who reminded me of the reason why I started the Sick Chick network. Caterina told me about her five-year-old daughter with FEVR disease. She explained that Cailee (her daughter) is currently considered low vision as well as has amblyopia (as well as multiple issues) which makes her eyes turn out. She told me about Cailee’s spunky personality and her warrior attitude. Here’s a quote from Cailee’s awesome fighter mom Caterina that had me tearing up when I read it later. I was so touched, “Shira understands the need for girls like my daughter to grow up with and have a positive self image and believe in advocating for yourself. I thanked her and told her that she without a doubt is a great example of what Cailee says is a "Tough Girl"....”

This is why I started the Sick Chick network. I want girls with illnesses and disabilities to grow up knowing how beautiful they are. I want them to grow up knowing how tough they are. I want them to grow up knowing they don’t need to be saved.

Maybe it’s a good thing there is no Disney Princess like us, because they really aren’t great role models. We need body positive role models who teach young girls to advocate for themselves. We need Sick Chicks.

Follow Cailee by friend-ing Cailee’s Corner on Facebook and like VisionQuest 20/20 on Facebook.

I can’t wait to see where this journey (that word again…) takes me. I’m so excited that you’re all here with me for it.

Xoxo,

Sick Chick

You can follow me on Twitter @sick_chicks and Instagram @shirastrongin 

Media Madness

Over the past few years I’ve noticed something. There is no one like me in the media.

Yes, there are stubborn characters, smart characters, sarcastic characters, characters who love writing, etc. But, when I watch a television show or a movie I can’t relate to the struggles the characters are going through.

Yes, it’s unrealistic that a character will ever be exactly like me. But is it too much to ask for there to be some disability representation in the media?  Sure, there’s that one girl in a wheel chair in that one episode where the main characters are learning a lesson about kindness and acceptance. And sure, there are shows like Red Band Society or Chasing Life. But, in their attempt to be inclusive and educational, these shows actually perpetuate ableist culture.

For once I’d like to see a main character on a Disney show or an ABC Family show that has a disability or is sick. One that isn’t used so blatantly to up the diversity, like on Glee (that show just makes me so mad for so many reasons), or for the “sympathy card”. A character that is accurately portrayed whose story isn’t just about their disability or sickness. I know I’m asking a lot (yes that was sarcasm).

We go through the same struggles as everyone else. We have school problems, we have boy/girl drama, we have family drama, we have trouble picking out our clothes. We do all of the same things as any able-bodied or healthy person does in a Disney shows; we just do it while being sick.

It’s 2015. Why isn’t there a show with a sick or disabled character whose entire storyline isn’t about their illness? Why is this a crazy concept? It shouldn't be. 

…And that concludes my soapbox. Thanks for reading, let me know your thoughts!

Xoxo,

Sick Chick 

Welcome To Me

My name is Shira Strongin and I’m disabled and chronically ill. Whew. The world didn’t implode.

I think it’s time I came out of the disability closet once and for all. For those of you that remember the old Disney show “Hannah Montana”, well she made living two completely different lives look easy. Having to hide a whole side of yourself sucks and is practically impossible, especially in high school. When you do decide to tell just a little bit to a few people you then worry about whether or not they’ll keep your secret. It’s stressful as hell.

So, I’m done.

This is for the people I went to school with. This is for the people who said I was straight up crazy. This is for the people who said I was an attention whore. This is for the people who think they know me. This is for the people who said I was lazy. This is for the people who spread rumors about me. Most of all, this is for me.

I have invisible illnesses and am what's considered "pretty ill" because of that. Basically it means you wouldn’t be able to tell how sick I am by looking at me. It’s why I’ve been able to pull off this whole Miley/Hannah thing for so long. You can read about my specific illnesses in my older posts. My illnesses are rare, I generally am the one educating doctors. They affect my entire body. In the past five years I’ve had to relearn how to walk six times and I’ve almost died five times.  I’m not saying this to get pity, in fact that’s the last thing I want. I’m saying this so you’ll realize how sick I have been and how much effort I have put into faking a smile and pretending to be okay everyday.

I hope you’ll take the time to go through my blog and get to know the real me. Maybe things will start to make more sense. I know this is probably confusing, so if you have any questions feel free to ask me them. I appreciate directness.

I’m sorry if you feel deceived, but see it from my perspective. I’ve been judged and looked down on for being sick, which is something many sick people experience. I didn’t want to spend my high school years defined as “that disabled girl” or “that sick girl”. It's also not something that easily comes up in conversation. I mean how awkward is this, "Oh an interesting fact about me? Well, my autonomic nervous system doesn't work. My doctors think that's pretty interesting." Yeah, I don't think that would've gone over so well in the "get to know you" games. Also, as I said before my illnesses are rare. Since doctors have a hard time making sense of me, how can I expect teenagers to? Especially since my outside does not match inside, and because my illnesses are chronic. It's not like I'll just wake up one day completely better.

I don’t want to hide anymore. As I said in one of my earlier posts, I hated my body and was so ashamed of it for so long. I’ve learned to love and accept myself the way I am. I think “staying in the closet” is only doing more damage. 

So, welcome to the real me.

Xoxo,

Sick Chick aka Shira Strongin

P.S. Sorry for all of the "Hannah Montana" references. I'm still adjusting to not being at Brown where "High School Musical" flash mobs were considered normal.  

Special shoutout to the Justice League - you guys were my inspiration to "come out of the closet" thanks for being the awesome and accepting people that you are. I love you all! 

I'm Back!

Where do I begin? My Brown Leadership Institute program was probably the best two weeks of my life. I made lifelong friends and learned so much. I renewed my passions for all things social justice, but especially for ableism. Ablesm is so unknown that my computer is trying to autocorrect the word. This blog post will be about ableism, which affects all of us and this topic provides me the opportunity to talk about my Brown experience.

Ableism: (n) discrimination in favor of able-bodied people

            I’ve always felt some sense of ableism. Things are just easier when you’re able-bodied. You don’t have to worry about finding a separate entrance, you don’t have to wonder why people are staring, and you don’t have to constantly fight with bureaucratic systems. I don’t want you to think I resent able-bodied people, because I don’t. However, I am offended when people look down on me, or pass me over for things because of my disability.

            I think the reason no one has heard of ableism is because people think it’s natural and okay to pity disabled people. But we are strong and capable, not pitiable. There seems to be little thought given to the discrimination against disabled persons. Perhaps this is because able-bodied people haven’t given much thought to or fought against ableism. Many successful racism campaigns were successful because both the affected and those not affected joined forces. I’m not trying to equate ableism to racism I’m just trying to compare effective tactics.

            As someone who is looking into colleges I know something I have to consider is accessibility and how accommodating the college will be. Even if I fall in love with a school if the school doesn’t have those two things I won’t be able to go there, which isn’t fair.

            Part of my Brown program was coming home with an Action Plan. I’m not going to go into a ton of details here, but basically my project is going to be focusing on accessibility and accommodations with colleges. I think this is a huge step in bringing awareness to ableism and eventually ending it.

            If you have any experiences with ableism please share or any experiences with college – both good or bad – please share those as well.

I hope you’re all doing well and are enjoying summer!

Xoxo,

Sick Chick 

Life Lesson: Life is About Reframing

So I’ve decided I’m going to be doing a new segment on this blog that I’m calling “Life Lessons”. When I turned 15, my mom decided to start giving me life lessons. After that I started collecting pearls of wisdom from people wherever I went. In fact, when I turned 16 my birthday present was a poster of life lesson quotes from my family and family friends. It’s hanging in my room.

One of my favorites from my mom is, “life is about reframing”. To be honest I don’t really remember how it came up. But I do remember the lesson behind it. Basically, it means that like a picture frame, life can crack at the most unexpected moments. We have to put the pieces back together. It may not be as beautiful or perfect as the original frame, but it will be unique and beautiful in it’s own way.

When you become ill your world seems to fall apart. What matters is how you pick up the pieces after your diagnosis.

While this life lesson seems tailor made for those living with illness it is very applicable in all kinds of situations. Since I am a high school student my mind goes directly to grades when I think of examples.  I’m a pretty good student if I say so myself. This past year though I had a really hard time. My school wasn’t working with me on accommodations, my health was getting worse, and I had become depressed. For the first time ever I got a grade worse than a B+. To me, that was equivalent of my picture frame shattering. It was the kick that made me get my act together. I started seeing a therapist, tried harder to work with my school, and looked for another school to switch to for this coming year. No, I didn’t end up with straight A’s and my school didn’t suddenly decide to start accommodating me. But, I still ended up with good grades, I’m leaving that old school, and I’m super excited about all of the possibilities with my new school. So, in some ways this new frame is better than the old one.

I hope you can apply this to your life and find it useful. As I said I will be continuing “Life Lessons” as a segment of the blog, so if you have any life lessons please email them to me!

Xoxo,

Sick Chick 

Tribute to Amelia

If there is one thing I hate – it’s being sappy. And this post is going to be so beyond sappy, but that’s because it has to be. Because the person this blog is about is just so perfect in my eyes, is my inspiration and mentor that only a sappy blog post can do her justice.

Amelia Moore.

I first met her when we were roommates in the Children’s Institute’s Pain Program in Pittsburgh.  I was 11 and she was 19, but she still took me under her wing. Before she got there I was quiet and stayed in my room during free time But that all changed when Amelia came. We had pizza parties with the nurses at midnight to give you an idea. She taught me how to make the best of any situation and always have a smile. She taught me so many more things too (like how to use a tampon, the value of Gatorade, the joy of I Love Lucy).

I’m an only child, but Milly, she’s my big sister. I wouldn’t be the person I am today without her having been a part of my life, especially early on when I was just getting diagnosed. I am not the only person Amelia has affected. There are so many people who love her all over the country. We’re all blessed to have her in our lives.

I consider myself especially blessed because Amelia got to take her first and only plane ride by herself to come and visit me out in California. When she visited I was just starting my freshman year of high school. She was with me for another major life event and that was very comforting. We got to go to the beach and she got to put her feet in the sand and the ocean, crossing two items off of her bucket list. We also got to do a big day outing and go to LA. We saw the Hollywood museum that had an entire room dedicated to her favorite television star Lucille Ball.

As I’m sure you can tell from the tone of this post, Amelia is not doing well. In fact, based on her thyroid levels she should be in a coma. Milly is a fighter though, many believed she wouldn’t be alive for this long. She is the strongest person I know.

She has made an incredible impact on my life. I hope I’m making her proud with everything that I do.

I love you Milly, so, so much.

Xoxo,

Your Little Sis 

It All Comes Full Circle

Welcome to my website – the new home of my blog! First you should know: this isn’t your typical blog. I don’t usually update on what’s going on with my health unless there’s something major that could affect my writing (like one time when I was on some cough syrup with codeine – I still cringe looking back at my grammar, spelling, and just all around poor writing in the post, but oh well). I like to talk about fun stuff, yet still tie in a little bit of a medical component that people can relate to. Second: things can get kind of weird around here, as you can probably tell from some of the pictures. I’m up for anything. I will discuss anything. Third: I want to be there for my readers. I am trying to create an awesome community of women with the Sick Chicks and I think that only works if we’re all there for each other. I am so much stronger because of the Sick Chicks I surround myself with, we have found a way to support each other through it all. I hope this will be a place to give and get that special kind Sick Chick support. So seriously feel free to email me anytime if you have questions, just want to say hey, or have any suggestions. Whatever it is I’ll get back to you. Now that that’s out of the way…

Here is a little bit about me. I’m 16 years old, I’m from California, but I’m by no means a beach girl actually my favorite place is Manhattan, New York. I love to read. John Green is one of my favorite authors. I really relate to Margo from Papertowns (I bet you thought I was going to say Hazel from TFIOS, got you there). I also write, a lot, as you can probably tell. I listen to music so much it’s hard to find me without my headsets in. I don’t know what my natural hair color is anymore because I’ve been dying all sorts of random colors since I was 12. My favorite has been either auburn or purple. I plan on getting a finger tattoo of either a semicolon or a blackbird, maybe both, as soon as I turn 18. Oh, and I have Ehlers-Danlos Syndrome (EDS), Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), Reflex Sympathetic Dystrophy (RSD), Restrictive Lung Disease, Poly-Cystic Ovarian Syndrome (PCOS), Scoliosis, Tethered Chord, Chiari Malformation, and Mast Cell Activation Disorder (MCAD). I think that’s enough stuff, don’t you?

The title of this post is aptly named “it” really has come full circle. My dear friend and fellow Sick Chick Mer has generously – and amazingly – made this site. I am actually sitting on a bed next to her as I write this post, which is just crazy on so many levels. Mer and I met randomly in Toledo, Ohio four years ago because we both had appointments with Dr. Grubb who is the POTS guru. We, as well as our moms, were instant friends. We had inside jokes after meeting just once. The only problem was we live on opposite sides of the country – me in California and her in South Carolina. We still managed to keep in touch and they even came out to visit us. But now as I’m on her coast and we’re putting the final touches on the website things really do seem to be coming full circle. When we first met, Mer and I were lying in bed watching “What’s Your Number?” now we’re still lying in bed, but we’re working on the website and checking our twitter feeds in between. You can check out her website MadebyMer under the page Our Community and there will be an interview posted about all of the great things she’s doing under the page Spotlight.

I can’t wait for all of the great things to come from this website!

This journey is only starting and I can’t wait to see where it takes me.

Xoxo,

Sickchick