Welcome to the Sick Chick Blog

Sick Chick has moved - if you would like to continue following my blog, visit my new website at www.thesickchicks.com 


Peace Out

Happy summer! I hope you guys are catching some sun and just chilling out.

Well…I have some really exciting news. I’ve teamed up with fellow TCAPP kid Meredith, creator of MadebyMer, to make (drum roll please) my very own Sick Chick website! She’s designing the website obviously, I’m just a writer; she’s the one who’s skilled with computers. But still, it’s really exciting! This website will be the new home of blog and so much more.

I’ve always been amazed by the strength of the girls, like Mer, who I’ve met along this journey. I want to create a place that spotlights all of the cool things these girls are doing such as making websites for donations to a special cause, or creating peer mentor groups, or making hospital visits just a little bit more comfortable. I also want to bring these girls together so that we can help each other be even more successful and make an even bigger impact. It only takes one person to make a difference, but there’s a whole team of Sick Chicks and we’re taking the medical world by storm.

I’ll still be blogging and I hope you will continue to follow me at my new location. I also hope you’ll support the other Sick Chicks including Mer who made my phenomenal website, which you can see here at www.thesickchicks.com.

Xoxo,

Sick Chick 

Shout Out to My Curvy Girls (And Guys)

Guess what time of year it is…
That’s right it’s scoliosis awareness month!

So this is really near and dear to me because just a year ago I had scoliosis surgery and it changed my life. I couldn’t breathe because my ribs were so twisted, so that gives you an idea of how bad my scoliosis was. My spine is now perfectly straight. And I’m screwed up for life – literally. But honestly, who isn’t in one way or another?

Scoliosis is not like most of my illnesses because it was visible. It was entirely new to me. I thought people would automatically understand, like hello? You can see the curve in my spine, you can see that my hips are uneven, and my torso is lopsided. How can you question that? But people did. Having scoliosis made me realize that unless you have a disease you cannot understand, whether it is visible or not. I’ve learned people will question anything that they can.

I also learned a lot about self-confidence. Heads up we’re going to get real here people so get ready for some awkwardness. I used to hate shopping, clothes did not look good on me. Some of it was probably in my head, but being honest how good could shorts have looked when one of the cuff was higher up on my thigh thanks to my uneven hips? And forget trying to find a bra that fit between my rib hump and uneven boobs – it was impossible. (Side note: I am happy to report that my rib hump is gone, my boobs are now even, and I have found bras that fit!) I couldn’t feel confident wearing those tight dresses that were super trendy a few years ago. I would teeter around in even the smallest of heels (again with the uneven hips) when I would see other girls my age walking like pros in 5 in stilettoes. I still can’t wear high heels for the safety of myself and others around me – I’m a klutz and I own it. Anyway, now that my spine is straight the world of fashion has opened up. And I freaking love shopping. Scoliosis surgery is not a cosmetic procedure and I don’t want anyone to think that. But don’t get me wrong, when you are used to being hunched over and twisted, and are suddenly not it changes your life and how you see yourself. I was terribly insecure about my spine before the surgery. I live in California, yet I would refuse to go anywhere I needed to be in a bathing suit.  Now I’m looking forward to spending all of this summer at the beach and showing off my bad ass scar.

Since this is scoliosis awareness month I want to give a shout out to my surgeon, Dr. Mundis. Not only is he a great surgeon, but he is also great human being. The man brought the nurses and me doughnuts when I was leaving the hospital post-op. How can I not like him? He works with a lot of complicated cases. So he wasn’t phased when I went into anaphylactic shock the day before I was supposed to have surgery and consequently freaked out the entire hospital. He even offered to come in on a weekend to do my surgery if the anesthesiologists were too freaked out to let it happen that day. Dr. Mundis is very involved with a charity called Global Spinal Outreach. I would love it if you all checked out. I am including a link directly to their “About Us” page.

http://www.globalspineoutreach.org/about_us/index.htm

So in closing if any of you are suffering from scoliosis know that, no matter how cheesy it sounds it’s true, you are not alone. There are a lot of us out here who know what it’s like to where those uncomfortable bendy night braces (seriously how do they expect us to sleep let alone breathe in those things?!), or the corset-like day braces (PINK had great shirts to go over those things when I had to wear one in case anyone needs, they are loose enough and long enough), or go through surgery if it gets to that point.

We’re a bunch of curvy, screwed up people, but that just makes us extra special.

Xoxo,

Sick Chick

 

Go Ahead And Stare

Hey guys! Sorry it’s been so long, it’s that stressful time of year with AP’s and finals. I just finished school, so I’m officially on summer – thank goodness! So, anyway I’ve had some uncomfortable experiences lately and it made me want to post. Being a chronically ill person you tend to get lots of stares. Because of your scars, or tubes, or wheelchair, or braces, etc. At any age this is uncomfortable. Especially as a teenager or young adult it’s hard. Is that cute guy/girl looking at you or your wheelchair? I know I wrote another post about insecurities and embracing your sexiness, but this one is a little different.  

We don’t have something most people do; control over their own bodies. I can’t control when my heart rate skyrockets, when I lose vision/hearing, etc. I can’t control my insides, but I can control my outsides. I know I talked about how just putting on fun clothes can make you feel better about yourself even on the worst days. This also helps with the whole “are they looking at me or my chair?” it’s helped me say, “no they are looking at me because I look damn good today”.  

If they are going to stare, may as well give them a reason to. Wear a statement necklace, have one of those flash tattoos, wear some awesome new makeup, or be like me – have your hair a different color almost every month. I know not everyone is going to like my hair, heck, my dad doesn’t. But it makes me feel good and confident, which is what matters.  

We are slowly changing and educating society and I truly believe that eventually we will live in a tolerant society where everyone’s differences are accepted. But until this goal becomes a reality let’s not let the ignorance of some bring us down. I’ve accepted that people are going to stare at me. I might as well choose why. 

Finding Wally and Other Mother/Daughter Misadventures Along the Way

I’m one of the luckiest people I know.

                People who know me, would think it’s crazy for me to say this, and would never use “lucky” to describe me.  I have multiple chronic invisible illnesses. I have my low times, and yes my low times get really bad, but I always pull through. If I were not medically challenged, as I like to view it, I wouldn’t have had the chance to gain perspective as well as different experiences. My life due to medical challenges is at times a series of misadventures, twists, and turns.  I have learned that fun can be had in almost any situation and location. 

                Many teenage girls are not close with their moms, but I am the opposite. My mom is one of my best friends, and while this is probably not cool to say as a teenager, it’s true and has been made possible by circumstance. I’ve spent a lot more time at home then most teens because of my medical challenges and even had to be homeschooled for a year and a half. My mom and I have traveled together quite extensively.  I’d like to say we traveled for pleasure, but no, we’ve traveled all across the United States for doctors and at times looking for Wally. (You may be wondering what Wally has to do with traveling for medical reasons, but don’t worry, I will get to him.)  Spending this much time with one’s mother, could have been horrible, but lucky for me, it brought my mom and I closer together. I wouldn’t be the person I am today without her influence. I attribute my positivity to her and my ability to make the best out of whatever hand life deals me. 

                Now, back to Wally.  My mom and I were in Virginia because I needed a specialized surgery. One thing you need to know about us; we have no sense of direction. And that’s an understatement. We get lost with a navigation system. So trying to get around a new city for a month was extremely challenging. Oftentimes we knew landmarks because we had been lost there before.  One day, while being lost and driving in what seemed to be endless circles, my mom offhandedly said, “This is like trying to find Wally!”  When I corrected her and said it was “Waldo” like in the children’s book, without missing a beat, she replied, “ Everyone is looking for Waldo, that’s why finding Wally is so much harder”.   We were in hysterics and at that moment Wally was born. Wherever we are lost, which is very often, one of us always brings up “looking for Wally”.  Or when we see someone wondering around, who looks lost, we know they too are looking for Wally.  We have even created an entire backstory for him. Wally is Waldo’s shier cousin who is always hiding, usually in closets, which is why he is so elusive. We are always on the look out for Wally in hopes of helping him “out of the closet”. 

                When not looking for Wally, we are often searching for the perfect hotel room to stay in when on our medical trips.  In one hotel in Rhode Island, we changed rooms 4 times in 4 days, before just leaving the hotel for another hotel all together.  The room I hated the most, was right next to a Catholic Church, which meant church bells tolling all the time. If Wally had been hiding in the closet in that room, he would have left in a hurry. Not that I was a religious person before, but after this I have a definite aversion to Churches with Bells. As if the bell wasn’t enough the room was tiny, and calling it tiny was an understatement.  There was barely room to walk between the bed to the wall, and even Wally would have been claustrophobic if he had tried hiding in that closet. It was my mom’s birthday, so my dad sent my mom an extremely large bouquet of roses.  While the arrangement was beautiful, it was very, very large, which meant not only finding a place to put it in our tiny room, but also lugging it with us every time we changed hotel rooms.  Of course, we would have given the vase of roses to Wally, if he had showed himself.   On other medical trips we would change hotels based on the television stations they got or didn’t get, or what shopping malls were close by and once because we needed more space and found an “all suites” hotel. We gave a new meaning to the term “wandering Jews”.  

                 My mom is one of those people that can make anything into an adventure; even being in the hospital and luckily, I have learned to make the best out of my hospital stays. The smell and sounds of the hospital are very familiar, and I have learned to ignore the beeping sounds of the monitors just as well as the nurses do.  And while being in the hospital over a holiday isn’t on the top of anyone’s bucket list, I have learned how to make the most of it.  Not many people can say they have partied in the Pediatric Intensive Care Unit, but I can!                

                None of my hospital or sick friends would be considered lucky by the standard definition of the word. But for all of us we know it could be worse and we know all we have is our attitudes and the ability to play the hand we have been dealt to the best of our ability. I am lucky to be here. I am lucky to be the person I am today, and I wouldn’t be that person if I were not sick. I am lucky to have the opportunity to become an activist for my community. I am lucky to have the special relationship I have with my mother. Most of all I’m lucky that I have many more misadventures to come.  

I’d like to end this with a shout out to my mom and all of my adoptive moms who I’ve met along the way. I hope you all have a great Mother’s Day!

If any of you readers have a story about your special mom or shout out to her, please share, I know we all appreciate everything our moms do for us.

Xoxo,

Sick Chick

Top Five Things Not To Say To A Teen With Chronic Illness (and some responses):

1)   “But you don’t look sick”

Responses:

a.     “And you don’t look stupid. Oh well, guess we were both wrong.”
b.     “What exactly does sick look like?”

2)   “Aren’t you kind of young to be using a wheel chair, walker, cane, etc.”

Responses:

a.     “Aren’t you kind of young to be so ignorant?”
b.     “It’s a new fashion trend. It’s all the rage in London. It must not have made it to America yet.”

3)   “You just want attention.”

Responses:

a.     “Yes because having to find handicap accessible entrances/exits is so much fun. So is fainting. I really recommend it.”
b.     “There are easier ways to get attention. Like being a mean girl/boy for example.”

4)   “You sure do sleep a lot. You should try to get out and do stuff more.”

Responses:

a.     “Why do you think I’m so pretty? Because I get my beauty sleep. Maybe you should try it sometime.”
b.     “Well as Twitter says; sleep and Netflix are bae.”

5)   “Why aren’t you better yet?”

Responses:

a.     “I’m a method actor and I have an audition for Red Band Society coming up.” b.     “What part of chronic do you not understand? Go pick up a dictionary.”

I hope you liked these and found them useful, or at least funny! If you have any more or better ones post them in the comments :)

Xoxo,

Sick Chick 

Bringing Sexy Back…Sick Chick Style

Speaking for myself I have never been comfortable in my own skin. This isn’t uncommon for teenage girls, but when you add having multiple scars, being in and out of wheelchairs, walkers, etc., having tubes off and on for various reasons, and all of the other visible things that come with invisible illnesses it makes for an especially self conscious person. It was only recently through struggling with depression (ironic right?) that I have realized it isn’t about what others think, but about what I think. I know I can preach that, but self-acceptance and self-love only come from, well, yourself.  

My body is covered with scars and other so called imperfections. I used to look for ways to hide all of them. I was scared to wear crop tops because I didn’t think guys would think I was pretty if they saw the scars on my spine. I used to pile make up on my face to hide all of the cystic acne that was left over from steroid treatments or from hormonal crap going on. After my PICC placement I wore long sleeves even on hot days, it also covered up my scars from all of the blood draws I have had (it looks like I cut myself on the inside of my elbows where they draw blood because of all of the scars).  

My mom didn’t help with this when she would tell me to put creams on to make these scars and imperfections go away. I know she wasn’t doing this to hurt me. She just knew how self-conscious I was and wanted to help and fix it like all moms want to; she didn’t know she was making it worse.  

This year I truly found myself and now I can honestly say – I don’t give a damn. I realized I love being different. I love having piercings, dying my hair every color of the rainbow when I get bored (which is like all of the time), and I love not dressing like everyone else. I wear crop tops because I feel pretty in them. I wear make up when I want to, because I want to, not to hide anything. I wear tank tops because it makes me happy. Depression made me realize how much time I spent hating my body, blaming it, and as a result hiding it. This ended up making me hate myself and not feel comfortable in my own skin more than a normal teenager. I don’t want any of you to have to go through this, but if you are I want you to know you aren’t alone.  

I know it’s hard to see yourself in a positive light when – if you are like me – you spend most of your days feeling like crap, in pajamas, eating junk food (that is if you aren’t too nauseous), and watching trashy TV. Sometimes all it takes to start to see yourself differently is putting on a nicer pair of pajamas (I used to wear gross stained ones all of the time, and I still do, but if it’s a particularly bad day I avoid these because I know they will only make me feel worse about myself), wearing a cute pair of shoes (doesn’t have to be heels, it can be sparkly converse, just something that makes you feel pretty and special), or doing your hair differently. It’s honestly that simple.  

Having a chronic illness doesn’t make you “ugly”, “unworthy”, “undesirable”, or “not sexy”. You are how you see yourself. I chose to start thinking of myself as beautiful, worthy, desirable, and sexy. And you know what? A lot has changed for me just because of my paradigm shift. I challenge you all to do the same.  

Xoxo,
Sick Chick

Chronic Alliance

Hey guys, here is that post I was telling you about! If you haven’t read the amazing article “Social Media – A Lifeline For Patients With Rare Diseases” by Dr. Judy Stone I seriously recommend you do. http://www.forbes.com/sites/judystone/2015/03/02/social-media-a-lifeline-for-patients-with-rare-diseases/

And not just because yours truly is mentioned in it. I can’t express how honored I am to have my poem in that article.  

This article really speaks to the need for more awareness on social media. A group I came across recently is Chronic Alliance. It was started by teen Sean Early who has Ehlers Danlos Syndrome (EDS). He created a very unique group. The Facebook page offers surveys for patients on their experiences with medications, doctors, etc. The most unique part is the way it allows people to connect. You are able to share writing, artwork, or music – whatever you are most passionate about. As a writer I love this. Without writing I would not be the person I am today and I would not be able to handle my illness the way I do. Writing has become my vice. Seeing other peoples’ work – whether it is writing like mine or artwork, or music – is inspiring.

I really recommend you guys check out Chronic Alliance. It just launched. Hopefully you all find it as awesome as I have.  

To hopefully inspire some posts I’m posting a poem I wrote when I was going through a really rough time, but I got through and you all will too. So don’t look at this as depressing, but instead hopeful because I was able to overcome these feelings.  

Looking back now it’s all fading out
All I remember is the echo of silence
Calling me forward begging me closer
A dangerous dance I’ll never get out of

 It’s all bottled up and tucked away
Kept in a safe place, the light you stole from me
You keep drawing me closer like a siren’s song
Know you’re pulling me down and there’s no coming out

Xoxo,

Sick Chick

A Sick Chick Original

Hey guys! I know it’s been a while, life and illness caught up to me. I’m so sorry! I wrote this song a while ago and somebody recently made me think it would be perfect to post. The worst part about chronic illness is how isolating it is. I think it’s time to change that and so does he. The next post (which will be coming in the next few days – I pinky swear) will be about a way to end this isolation and unify us.

Hopefully these lyrics speak to you.

If you’re ever feeling afraid
I’ll be there to keep you safe
I know you must be feeling alone
Just looking for somebody who knows

And I’ve been there feeling like I don’t know
Where to go or where to turn
I feel it in my heart it burns
I’ve been there feel like no one understands
Take my hand I’ll lead the way
Find some beauty in the pain

I know it’s hard to reach for the stars when you’ve been stuck in the dark
There’s a light that shies even in the rain
Watch and it’ll show you the way 

And I’ve been there feel like I don’t know
here to go or where to turn
I feel it in my heart it burns
And I’ve been there feel like no one understands
Take my hand I’ll lead the way
Find some beauty in the pain

It’s time to shout it out
Bending and breaking out
Weight lifted off your shoulders
Nothing can keep you down
Climb out from underground
Your story isn’t over

I’ve been there feel like I don’t know
Where to go or where to turn

I feel it in my heart it burns
And I’ve been there feel like no one understands
Take my hand I’ll lead the way
Find some beauty in the pain

Xoxo,
SickChick

The Sick Phenomenon

Hi guys! I know it’s been forever and I am so sorry for that. I had some personal stuff going on and was unable to post. I’m back now though and hope to become regular with my blogs again. 

I feel like I should do a check in with everyone since it has been so long. Is school going well? How is everyone feeling? And most importantly…how was your Halloween? I mean it’s one of the best holidays of the year. It’s the only time you get to pig out on candy without people judging you. 

This Halloween was different though. This was because of what I am calling, the sick phenomenon. Years ago the fad had been vampires and werewolves, now it’s cancer and sick kids. I loved The Fault In Our Stars as much as anyone else, in fact it’s one of my favorite books partially because it didn’t sugar coat things, but people who are healthy didn’t seem to get that. Healthy people saw a love story worthy of Romeo and Juliet. The reason I know this? When I was at a party and out trick or treating, guess what couples’ costume I saw? Yep. Gus and Hazel. Decked out with a cannula and water bottle oxygen tank. So now it’s “acceptable” to dress up as someone with terminal cancer…because it’s fictional and all. 

The thing these people don’t realize is, they get to take off the cannula at the end of the day and they don’t need an oxygen tank to survive. It is extremely offensive to dress up as these characters. I know I’m probably going to catch some heat for this because everyone has dressed up as their favorite character at some point or another, so why shouldn’t someone dress up as a character just because they are sick or have cancer? I believe it is crossing a line. Today with shows like The Red Band Society glamorizing illness and being in the hospital, that line is being crossed more and more. To me it is offensive that people who are perfectly healthy want to dress up/pretend to be people who are terminally ill. They should be thankful for their health because, as I know all too well, that can be taken away in a moment. 

My next post (which will hopefully be soon) will be continuing on this topic of the spreading “sick phenomenon” and how The Red Band Society plays a huge part in it. I mean really, how ridiculous is that show? Hospitals are not like that, not to mention the patients, and well I’ll probably end up going off on a rant. Email me at sickchick@tcapp.org if you want me to say anything specifically, have anything to ask me, or really don’t agree with anything I’ve said. 

I want to hear from you! 

Lots of Love

Sick Chick 

Bow Down To Benadryl

Hey guys! Wow it’s been a long time, I’m so sorry about that, recovering for surgery and doing summer homework has been keeping me busy. I mean really why do teachers not understand the concept that summer is supposed to be a break? Anyway that’s not what I’m here to blog about. I’m here to talk about my hero – Benadryl. We have all of these amazing holidays to celebrate some very special things, but I have come to realize we don’t have any holidays that celebrate what are probably the most important things in our chronically ill lives’ – medication.

 I don’t know about you but I think our medications deserve a holiday of their own, or at least some sort of recognition for all they do for us. I bow down to some of my medications because of what they do for me and the positive impact they have had on my life. Benadryl helps me not have anaphylaxis reactions, not be as itchy, and get some sleep, Zofran helps me not be nauseous (lets face it that’s huge), Theophylline, Xoponex, Brovana, which all help me breathe (pretty important right?), now I’m not going to make you go through all of my meds that would take way, way too long but I’m sure that from this you can understand why I think we should celebrate our medications. Bow down to Benadryl, or whatever your ‘drug of choice’ is, it deserves a little gratitude for all it does for you.

 I’m planning on updating sooner because I want to do a back to school post; I know how stressful it can be getting ready to go back. If anyone has any coping techniques or advice for lockers, how to deal with teachers, stress from homework, or anything else let me know and I’ll include it in the post! Email me at sickchick@tcapp.org

 Lots of Love and Gentle Hugs

Sick Chick 

#prayforpoop

Hey guys, I’m back! I know it’s been forever, but that’s what surgery does to you – I’m sure you’re all familiar with it. An update on my surgery really quickly is that everything went really and, for once, having EDS worked to my advantage because my spine was so flexible the surgeon was able to get it pretty much straight instead of 20 or 15 degrees like in most scoliosis cases with curves like mine. But it’s now official, I’m screwed up (as if I didn’t know that before) but now I have screws going up my spine to prove it. Like my best friend says ‘I’m screwed for life’, but lets be honest, who isn’t?

Anyway one of the worst things post surgery is the constipation. My other best friend discovered how bad the constipation can be because she had the same surgery a few weeks after me. For confusion sake let’s call her Curvy Girl and my other best friend who says I’m screwed for life Burlesque. So Burlesque and I were visiting Curvy Girl in the hospital when Burlesque came up with a new trend #prayforpoop because Curvy Girl and I were so constipated. We even got the nurses saying it. On our way out of the hospital all of the nurses came up to us saying #prayforpoop. That’s when it all started. Everyday after that in our group chat we would text ‘have our prayers been answered?’ as a way of asking have we had any progress on the constipation front.

You may be wondering why I’m blogging about this, but I think this is important because a lot of people on here have gastroparesis or other constipation problems and its horrible to have to be embarrassed by them. Instead of being super awkward around my best friends like I could have been, Burlesque was the one to create the hash tag making me and Curvy Girl so much more comfortable. Now, with the three of us there are no boundaries none of us have filters and when we’re together there should probably be a camera recording at all times to capture the stupid stuff we say and do. That being said, I still don’t always feel comfortable talking about my health issues and especially constipation. But you know what? Crap happens – or at least it’s supposed to. So I might as well get comfortable. Maybe #prayforpoop can become a running joke with your friends, family, or even doctors and – like it did for me – help you not to be so awkward and embarrassed about this kind of stuff. Lets get #prayforpoop trending because if you’re like me you need as many prayers as you can get.

 Lots of Love and Prayers for Poop

Sick Chick

It’s (Pity) Party Time!

Hey party people! So normally I’m the first one to reject pity – I hate it, in fact I think I have a post ranting about people pitying me. But sometimes when things get really bad wallowing in self-pity is all you can do. Now it’s not good to be this way all of the time, if you always focus on the negative in your life then you can’t focus on all of the good things. For me: I might be chronically ill and that sucks, like majorly, but there is still good in my life. Sometimes there are bumps in the road that make it hard to stay positive and the best way to get through a day when you’re wallowing in self-pity is…to have a pity party! 

One of my friends is going through similar challenges as me and we need the same major surgery. Both of us were having one of those days where you just need a good cry and someone to vent to. We came up with a brilliant idea; a pity party! We each got a ton of our favorite junk food and gossip magazines, watched our favorite movies, and got to vent to each other. We also made a pre-op bucket list of some of the things we want to do before we have to have surgery. My surgery is coming up in a little less than two weeks, so that isn’t much time, but so far I’ve managed to cross off four things on my list! 

Anyway the point is, sometimes you just need a good excuse for a party and why not let that excuse be pity? Everybody has those days where the weight of their circumstance becomes unbearable; maybe the answer to lightening that load a little is a party? 

Speaking of my surgery; I am having scoliosis surgery, which is a major surgery for anyone even without adding chronic illness on top of it. My recovery is going to be a long one, but I will try and post as often as I can, even if they are just short posts. Expect lots of posts complaining about hospitals and sharing experiences with nurses and doctors. 

Until next time,

Sick Chick 

One Sick Love Story

Let’s talk books, how many of you have read The Fault In Our Stars by John Green? It is a novel that is both hard, yet inspiring to read as someone with a chronic illness. It centers on Hazel Grace a teenage girl suffering from advanced stage thyroid cancer and a teenaged boy Augustus Waters, who is in remission from osteosarcoma. Against all odds, the two fall in love and face the daunting challenges and threats cancer poses together. Their road is not easy and, much like life, does not have what most would consider a happy ending. But it does have a realistic ending that leaves you satisfied. The book still touches hearts and makes us realize that nothing is perfect, or lasting. There is so much that cannot be explained, but we have to learn how to accept the challenges that come our way and deal with them the best we possibly can.

“There is no shortage of fault to be found amongst our stars.”
-    John Green, The Fault in Our Stars.

The stars are a metaphor for fate, and I think we can all relate to the concept of there being some fault in our stars, but we can’t blame the stars because (a direct quote from the book) “The fault is not in our stars, but in ourselves.” We make choices and these choices affect us and shape who we are as people. Some things are not up to us to decide, it was not my decision to be chronically ill, but it is my decision how I deal with it. I am going to make the best of my days being sick and live my life to the fullest. When you are feeling out of control and angry about being sick, think about this. Our faulty stars may determine what happens, but you determine what to make of it.

“Maybe okay will be our always.”
-John Green, The Fault in Our Stars.

 “The pain, it’s determined and demanding to ache, but I’m okay. And I don’t want to let this go, I don’t want to lose control I just want to see the stars with you. I don’t want to say goodbye, someone tell me why. I just want to see the stars with you.” Troye Sivan, The Fault In Our Stars

 Check out Hazel and Augusts’ ‘sick love story’ in theatres June 6, 2014, or read it first, I highly recommend it. Also, check Troye Sivan’s song he wrote inspired by The Fault in Our Stars.

 Lots of Love,

Sick Chick 

Hey Guys. I'm alive!

So sorry I haven’t posted anything since, what? Thanksgiving I think! Life got caught up with me, I’ve had a never ending sickness because of my immune system, finals, and the most important and best thing…winter formal! Finals sucked – when don’t they? For all my friends who don’t have chronic pain who complained about having to sit in a room for 2 hours and write well I just held my breath and tried not to laugh at how easy they had it. I mean my wrist was dislocating while I was writing and I couldn’t focus because of spasms, and lets not forget about having to sit in one position for that long with out even being able to stretch. But I digress. These are the things we have to get used to and deal with, but it’s nice to vent through the blog. If any of you want to vent about anything the comments section is open and my email is always good too, sickchick@tcapp.org for those of you who need it.

But onto the good stuff, formal! Dresses, makeup, hair, nails, and of course high heels. Gotta love them right? I for one do, they just don’t love me back, but that’s like my relationship with a lot of things. Dancing in heels is another story, you have your balance to deal with (or if you’re like me – lack of balance), you have your chronic pain, and you have your basic I’m in heels and my feet are killing me and blistering pain too. To me though it’s all worth it in the end if you have fun and don’t make yourself too much worse. I made myself sick this time, but it wasn’t really my fault. It just turned out my immune system decided to have a tantrum and since I had a massive infection in my lungs through my sinuses it was bad. So in the end I still think it was worth it. I want you to share your “formal moments” you know the stuff you do that while it could make a little worse ends up being so worth it in the end because you have an amazing time and create memories that will last forever. Putting a kind of positive spin on things here right?

Hope everyone is doing well :)
Sick Chick

By the way if this is poorly written or parts don’t make sense…I’m on codeine I’m like half asleep and one hundred percent out of it. Love you all for not judging! Until next time

Happy Thanksgiving

I know sometimes it is hard to be thankful when you have a chronic illness. Believe me I get it. Thanksgiving was ‘enemy number one’ when I was in the process of being diagnosed. All I could think about were the horrible things happening to me, I did not know what I had to be thankful for. Every year since getting sick, someone at the Thanksgiving table would say, “I’m thankful for my family, my health, and my family’s health.” My first thought was how inconsiderate they were being, but honestly I do not blame them now, they should be thankful for these things. I needed to stop focusing on what I don’t have and realizing all the things I have to be thankful for, and some of those things are because of my illnesses.

I would not be the person I am today if I did not have a chronic illness in good and bad ways. I live with chronic pain because of my illnesses, I have to take and manage medications, I have to be responsible in ways most people my age do not have to be (a good and bad thing), I have had surgery, I have scars – both emotional and physical, but all of these have given me positive traits. Without dealing with pain I would not be a fighter, I would not know how to persevere through any challenge faced to me, I am responsible because of all the things I have to manage in my life, I am proud of my scars because they show what I have overcome and who cares what anyone else thinks of them because they are beautiful to me. If it were not for this illness I would not have met all the amazing people I have who are now some of my closest friends and biggest inspirations. If it weren’t for my chronic illness I wouldn’t get the opportunity to write this blog. Most of all, I would not know how strong I truly am because I would never have had to overcome all that I have.

While I am not thankful for being chronically ill, I am thankful of the person I am because of it and the people I am fortunate enough to have in my life because of it. So my thanksgiving challenge is for each of us with chronic illnesses, to share with us what you still have to be thankful for.

I want to give a shout out to a special person because this is a Thanksgiving post. Her name – for this post – is A and she is one of those people I am thankful for to be in my life. She is like a big sister to me, and she, while being incredibly sick, always has a smile on her face. A appreciates everything and has taught me to do the same, she is truly and inspiration words cannot describe. Love you A.

The Sick Chick

The C Word and the D Word

No matter where you come from you recognize when there is a letter then word, its generally a curse word or an inappropriate word. Well, for me when I use the terms ‘the C word’ and ‘the D word’ I’m not talking about your average curse words, inappropriate words, or bad words. I’m talking about cripple(d) and disable(d). Don’t mistake my lack of willingness to say either of those words, especially disabled, for lack of disability pride. Trust me, I’m not lacking in that, but I don’t like to be looked at as ‘disabled’. In one of my other posts I believe I did my little vocab Latin and Greek roots nerding out thing. Dis is a Latin root meaning not and able comes from the Greek root ible, meaning able or capable. So if you put the two together it means “not able” or “not capable” depending on which way you want to use it. Either way, I don’t want to be considered not able, or not capable.

As far as the ‘C word’, crippled, goes well, no matter how you spin it, being called it hurts. It’s one thing to say, “What’s up Crip Chick?” to another friend who has medical conditions, or to call yourself that. Kind of like me calling myself the Sick Chick – how’s that for disability pride? I embrace it! – but ‘cripple’ has now come to be used as a derogatory term, has a negative connotation with it, and it is not okay. At my old, old school I dealt with a lot of mean people, I do not want to call it bullying because truthfully it wasn’t, it was just harassment. When I would be in my wheel chair girls, this one girl in particular, would come up to me and call me things like, “Cripple b*tch, dumb cripple, worthless cripple, etc.” Super original insults right? The one thing they all have in common is: ‘the c word’. I would go home and cry. I would stand up for myself, act like the mean people couldn’t get to me, but what they said hurt. At my new/current school a girl had an ankle injury and when we went to Disneyland – it’s what we Orange County Girls do in our free time ;) – I lent her my wheelchair so she wouldn’t have to walk around on her ankle all day. I was only going for part of the day, so I did not need my chair. Her and my other new friends milked the entire thing. They all said, and I quote, “We are going to take your wheel chair every time we go to Disneyland from now on! It’s so great being able to skip the lines, we’ll just trade off who gets to be the cripple that day.” I hadn’t, and still haven’t, told them my full medical challenges, but shouldn’t they know how wrong that is on so many levels? Taking advantage of the system, faking a disability, and then the use of ‘the c word’, I mean come on. You should not have to have a disability to know how sickening behavior like that is. As if that wasn’t enough, when we passed some guys they said, “Whoa, look, they have a wheel chair so they get to skip all the lines. We need to get ourselves a cripple.” If I hadn’t been with my new group of friends I would have ripped him a new one, honestly I wanted to slap him. If ignorance and stupidity counted as legitimate disabilities this guy and his friends would’ve been first in line for the disability lines at Disneyland. It’s actually because of people like them and my new group of friends that Disneyland is shutting down the disability lines. It’s so corrupt; people will hire a disabled person to guide them around Disneyland just so they can cut the lines. This is a whole separate issue that I will get into in another post, by the way. But, back to the issue at hand. I am scared to go to my school in a wheel chair because of how people will react, it should not have to be that way. I do not want to go through what I went through at my old school, the harassment I mentioned was only the stuff that was particular to ‘the C word’, but it was much worse than that. What will it be like at this school? I can’t be the only one feeling like this. I know this blog isn’t popular, but for those of you who do read this, spread the word. It’s not okay to call anyone a cripple or disabled in the derogatory sense of the term.

I wrote this poem late at night when I was having a really hard time with my new/current school:

 

It’s just a word

Maybe to you

To me it’s my identity

I deny it, I hide it

But it is there, a secret longing to get out

It’s just a word

One that holds meaning

A spiteful one, a hateful one

To me and not to you

It’s just a word

I repeat that

Over and over and maybe

Someday it will be true

Cripple

It just a word

To you maybe

But to me

It’s not just a word

 

This is an important subject so please, please get the word out that cripple is not an okay word and neither disabled if it is not used in the proper terms.

Kisses,
Sick Chick

I’m trying different out closings “Hugs” “Kisses”, I’m getting bored with ‘Lots of Love’, but I’m still sending, lots of love!