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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 

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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 

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#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

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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 

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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 

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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

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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

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The C Word and the D Word

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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!

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