“#DisabledAnd” – SOFIA.

“#DISABLEDAND”

hello,

it’s sofia. if you haven’t come across me before, it’s nice to meet you. let’s get into what all this is about, yeah?

i am 20 years old. i have a chronic invisible illness: severe crohn’s disease, with complications of inflammatory arthritis in my hands, knees, & feet. it caused me to put a halt to my plan of becoming a professional violinist.

when i was first diagnosed at 17 (almost 18), i was incredibly ashamed of my illness, & did everything to hide it from people. i’d been experiencing symptoms for years, but hadn’t really said much – until things got bad enough to get me hospitalized.

now, at 20 years old, i am open & honest about my illness. i have used my pain to relate to others; i’ve started making “art” centered around my illness, the person it’s made me become, but also emphasizing my multi-dimensionality as a human being. my illness doesn’t make me one-dimensional, just as being healthy wouldn’t make me one-dimensional.

ever since i’ve had to stop playing violin, i have been writing more. i have been taking photographs of myself at vulnerable moments. i have been making videos, sharing my story & hoping that i’m able to be relatable to other chronically ill young people out there. i know they exist – i am one of hundreds of thousands.

i try to show my strengths as a chronically ill person. i don’t share my vulnerability as often. this is probably the most in-depth i have been to a “larger audience” – & i am incredibly grateful to myself, my friends, & my family for getting me to this point.

i’m also grateful for social media. it has helped me find people who go through similar things; it has helped me spread my message; it has helped me become more comfortable with sharing more, as i saw people responding in a positive manner chronic illness-centered to things i shared. it’s been incredibly validating & encouraging, & i am very grateful for that.

so – you’ve seen some positive videos & pieces that i’ve written. you’ve seen me smiling in hospital beds; now, i’m going to share a more painful, vulnerable moment

i have been nervous about sharing this, but i think it’s valuable – both to me, & to others experiencing similar things – to do this.

i don’t speak as well as i write, but i tried to incorporate a lot of different mediums into this project. there’s photos, there are some “diary entries,” & there is even a video.

before i share everything, let me explain the hashtag “DisabledAnd.”

#DisabledAndCute is a hashtag used on twitter & other social media outlets to raise awareness for those with disabilities, chronic illnesses, & terminal illnesses. it is one of many ways that disabled/chronically/terminally ill people share their stories with the world. it is incredibly important.

however – i am not always “disabled & cute.” sometimes, i am disabled & sad. other times, i could feel disabled & ugly. maybe i wake up one day feeling disabled & powerful. “cute” is one of many ways to describe a disabled person, & i think that the original hashtag is incredibly important, because it shows that disabled people can be beautiful, ethereal, breath-taking…you name it.

i am multi-faceted, & my illness(es) do not make me one-dimensional. “#DisabledAnd” is me sharing more about my illness & how i deal with it. it is me being “disabled & frightened.” it is me being “disabled & vulnerable.” it is me being “disabled & in pain.” it’s also me being “disabled & funny.” it is a lot of things. i took a semester off of university because i wasn’t well enough to attend. that made me feel disabled & weak. it made me feel disabled & tired. it made me – & still makes me – question my future.

i thought it’d be appropriate to share all of these things with the world, as i prepare to return to school in january. i am very proud of myself. i have a lot to work on, but i have overcome a lot.

this is quite frightening to share, but it’s something i have been working on for a very long while – consider it my “final project” for the school term i didn’t have.

i hope you can take the time to look at the “full picture.”

much much love,

SOFIA.

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instagram “live.” 11.22.2017 

VIDEO – RIGHT HERE 

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Stop, Drop, Go Get Your Damn Flu Shot

Before you start reading this, go to your local pharmacy/primary care physician & get your seasonal influenza vaccine.

I’m kidding. Read this first, if you feel like you could use some convincing. But please – when you’re done reading this…go get your damn flu shot. Let me explain why, okay? Let’s do this! For health! For less fatigue! For overall contentment.

Okay. First off, what is the flu, & why is it a big deal?

We could get into pages upon pages of articles, research, history books, & a whole lot more material – but let’s keep it short & sweet. If you want to know all about influenza/the flu & its history, it’s right at your fingertips – trust me. But here’s what I think we all need to know.

“The flu” is short for influenza, which is a virus. It’s been around for a long time (ex. Spanish flu) & tends to morph from year to year.

The flu is short-term; it usually resolves within a matter of days/a few weeks, can be treated quite easily, & can, of course, be prevented with a flu vaccine.

The flu spreads VERY easily – according to the CDC (Center for Disease Control) there are over 3 million cases a year in the United States alone. That’s a lot of people. The flu will vary in degrees of severity, but officially, it affects 3 million people per year…in the U.S. alone.

The flu attacks the lungs, the nose, & the throat; these are all mucous membranes, & viruses can spread more quickly & easily through these membranes. For most, the flu is treated with either over-the-counter medications like Tylenol/Aleve for the fever, or prescribed antibiotics. The more hydrated you are, the better – the flu dehydrates your system, so keeping up on fluids is important if you do have the flu already. Rest, drink water & juice, & rest. Of course, check in with your PCP (primary care physician) if your fever is too high, your symptoms are starting to get weird, etc. In my opinion, you should always go to the doctor when you’re not feeling well (if you’re able). This way, you could possibly nip something like the flu in the bud, & not have to pay more for antibiotics/Tylenol/etc. It could save you time, money, & trouble – that’s what I call a win/win/win.

Like I said, the flu always changes, which is why it’s important to get a vaccine every single year. This isn’t like a MMR shot; it’s not a one-&-done, it’s a long-term affair. Yes – that’s inconvienient, but once you look at the symptoms of the flu, it’s a small price to pay.

The most “normal” or “common” flu symptoms will most likely be some of (not always all!) of the following:

  • fever
  • chills
  • muscle aches
  • cough
  • congestion
  • runny nose
  • fatigue

There are more symptoms, & obviously they’ll vary from person to person, but these are, across the board, most common. They’re experienced by “healthy” individuals – people who may not have a fun time with the flu, but will not experience severe side effects if they’ve caught it. That’s the majority of the population; they’re called “low-risk” patients.

There’s another, smaller group that is the opposite of low-risk patients in most ways. They’re called…high-risk. Creative! The high-risk patient category includes young children, those who are pregnant, older adults. Last (but most certainly not least), it includes: those with chronic illnesses/conditions &/or weakened immune systems. Hey! That’s me!

What makes me (personally, I mean) a high risk patient? My chronic illness, the medications I am taking for my chronic illness, & my weakened immune system, which is all thanks to the low-dose chemotherapy medication I have taken & will continue to take – it helps my body accept the drugs I need to treat my illness, but it weakens the immune system. It weakens it a LOT.

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Flu Shots Can Be Sexy

I had a normal blood panel before I was hospitalized for the first time (in March of 2015). A normal blood panel means…that everything in your panel is in the normal range. Now, two years after diagnosis & various powerful medications, my white blood cell count is very low. That makes me prone to infections of any kind, & puts me at a higher risk of catching the flu than your average Joe. It gets better – like I said, the high-risk category faces all the symptoms low-risk category does…but we have even more! Best of all…these side effects are very dangerous!

So – what kind of symptoms could you experience if you’re a high-risk patient like me?

For high-risk patients, flu symptoms can trigger pneumonia or a blood infection, it can cause diarrhea (which causes dehydration…which causes you to feel even worse) seizures, &…death. Yes, death! A high-risk patient can catch the flu, get an infection, & die…because of the flu.

For those of you thinking thank god I’m not in that category: great!!! I am happy for you, of course. Health isn’t to be taken for granted. But…but! That doesn’t mean you shouldn’t get your flu vaccine. There’s less fear for those who are low-risk, because getting the flu wouldn’t be that big a deal. There’s a lot of fear for those who are high-risk, because I know that even if I get my flu vaccine, I’m still in greater danger of catching the flu than the average Joe – that’s because the flu has a lot of strains, & the vaccine might not cover them all. The average Joe would be able to shake off an unexpectedly severe case of the flu; I, however, wouldn’t. So – if a healthy person hasn’t gotten their flu vaccine, they can still be a carrier, even if they themselves don’t have many (or any!) symptoms. That means that I & many others are still at risk for catching the flu.

Last year, I got my flu shot at my specialist’s clinic – like I said, the flu vaccine is an absolute must for me – no “ifs” here! Still, I got a really bad throat infection, had to come home from university for a few days, & was on steroids for 10 days. I’d gotten my flu shot & taken all precautions – but was still in the ER. This was probably due to catching something laying around…most likely in a public bathroom/classroom.

This brings me to my next point: what (aside from getting the vaccine) can we do to keep healthy this upcoming flu season? The flu is an airborne virus, so it’s pretty easy to catch (remember: 3 million people per year get a case). These are some great tips that should be followed by high & low-risk patients alike:

  • Wash your hands. Wash. Your. Hands.
    • I cannot tell you how many times I see people using a public restroom & then just leaving without washing their hands. That’s…not okay at all! There’s no excuse to not wash your hands. The soap is there, the sink is there, & the paper towels are there, too. Please use them.
  • Use hand sanitizer.
    • Hand sanitizer isn’t as good as washing your hands, but it’s a good on-the-go way to keep clean. I don’t use any particular one – just whichever is in the drugstore checkout line.
  • Try to avoid hanging around people you know have the flu. 
    • Let’s face it – it’s plain stupid to hang out with someone you already know has the flu. Healthy people, please don’t do it! Sick (chronically ill) people: don’t feel like a bad person for not being able to bring a friend or S/O food or drink. You’re protecting your health, & if a friend or S/O gets mad about you saying you can’t come over until they’re better…they’re not a good friend or S/O.

If you still feel like your immune system is invincible, take some time to read this:

Basically, by getting the flu shot, you’ll be saving yourself a lot of potential grief. You’ll be saving yourself from getting the flu. You’ll be able to have one less thing to stress about during an already stressful time of year, & you will be helping prevent actual death among the smaller part of the population who are at greater risk for catching the flu – catching more dangerous strains of it, no less.

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Okay…what’s the grief you’ll be saving…other than avoiding the flu? Well, like I mentioned, even those at low-risk can still get a bad case of the flu. This can sometimes (not always) warrant a hospitalization, if the flu you happen to catch carries extra risk of pneumonia/other complications. If you get the vaccine, you’re already taking a big step to save your money for something other than potential hospital bills. Hospitals are expensive. Trust me! Please do. In the hospital, you’ll be charged for anything from a bag of saline solution to a few shots of IV medications to a bedside doctor’s visit. Then, you may be sent home with prescriptions to keep your flu under control. All these things cost money – no matter your healthcare situation (co-pays can be expensive, too).

Now that we have that covered, why does one need a flu vaccine every year, & why don’t we get the flu from the vaccine itself?

Like I mentioned several times, the influenza virus morphs; it’s a shape-shifter, if you will. It figures out ways to become stronger in different ways so that it will continue to thrive. So – last year’s flu shot is invalid, because there are different strains being added to the flu vaccine every single year. The flu this year will be different from last year’s; you still may get the same symptoms, but it’s delivered in a different way – again, this is why we need one every single year.

As for catching the flu from the vaccine, there’s almost (I’m speaking “scientifically” because there’s no always; this, however comes pretty close) zero chance that that will happen. The flu vaccine doesn’t contain a live virus; because of that, it can’t give you the flu. There used to (& perhaps still is…I don’t know because I never had that option) be a nasal “injection” that acted the same way a flu shot did…at least, it was supposed to. The CDC no longer recommends getting the nasal method of vaccination, because it contains a live virus. This increases chance of feeling quite sick afterwards, & yes – even catching the flu from it.

No, you will not get autism from the flu vaccine – or any other vaccine, for that matter. To say otherwise is uninformed & insulting to those with autism!!!

Check out this great page “Key Facts About Seasonal Flu” on the CDC’s site – it answers a lot more questions than I did, & does in a more eloquent manner.

So – here’s your push. I hope that if you haven’t gotten your flu shot yet, this little post convinced you to do so. Remember – you’re saving yourself money, maintaining your own health, & helping protect the health of those around you with compromised immune systems. Like I said: win/win/win. Stay safe, wash your hands, get your vaccines, & be careful around those with supressed immunity if you do end up getting the flu. Here are some more ways the flu can be spread:

  • By airborne respiratory droplets (coughs or sneezes).
  • By skin-to-skin contact (handshakes or hugs).
  • By saliva (kissing or shared drinks).
  • By touching a contaminated surface (blanket or doorknob).

Alright…NOW you can go do it! Go go go!

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Flu Shots CAN! Be Sexy.

Love,

Sof ❤

Illness Is Not A “Fetish,” My Illness Has A “Fetish” For Me: Looking At the “Fetish” Music Video By Selena Gomez – & How I Think It Relates To Chronic Illness

NOTE: Before I begin, I’d like to say that I am very well aware of the…lack of social awareness Selena Gomez has had (“all lives matter” statement & so on). I still think it’s important to hear this out. Selena Gomez may not be likable to you, to me, or anyone else; she may have offended you many times; she could be the worst friend or just bad at conversation. That does not, however, make her chronic illness go away. It furthers my point that chronically ill people are not your angels – chronically ill people have said & do say offensive things. They are not all “good.” They are all not “correct.” I think it’s important to acknowledge that. I hope that Selena’s illness has given her perspective on marginalized communities – because being chronically ill does make you part of one of those marginalized communities, like it or not. Regardless – I think this music video & her latest announcement carry a lot of weight. I hope it will inspire people to speak up about how they feel. I hope more celebrities will continue to open up about chronic illness. Chronic illness (invisible or not) is present everywhere. Either you are ill, or you know someone who is. This is not “rare.” This is common – yet it’s treated as though it has never been heard of. 

I wish every single day that more people will continue to learn more, & that chronically ill people will feel confident to speak up for themselves, about themselves, & share other things about themselves, too. Remember – we are not only our illnesses. One more side note: although Selena Gomez & I do not have he same illness, we both have “invisible illnesses.” I think that if you believe this music video has metaphorical significance to chronic illness, it’s quite relatable across the board – no matter what illness you have. For context (in case you didn’t already know) mine are Crohn’s Disease & inflammatory arthritis. This past summer, Selena Gomez released a cheeky single: “Fetish,” featuring Gucci Mane. Initially, there was a lyric video. It is focused only on Selena’s lips, in sparkly gloss. She smiles, bites her lips, & plays with her elegant, almond-shaped nails. It’s undeniably sexy.

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Selena’s Instagram, however, hinted that something else was coming – a project with Petra Collins. It was only right to assume that it’d be a full music video. The sneak peeks at the cinematography were…very different, let’s say, than the images provided for the lyric video. Selena looks somber; vague. She doesn’t look as though she’s completely aware of her surroundings. It’s misty. She looks as though she’s trying to find something she’s lost.

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I remember the day the video came out – I talked with a few friends about it. We admired the video as well as the photographs (also taken by Collins). My sick friends & I talked about how eerily relatable a lot of the video was. This was not your run-of-the-mill “sexy music video.” There are no bikinis. The almond-shaped manicure, if it is there, is not emphasized. Neither is lip gloss. There are scenes of Selena in a freezer. She looks robotic; it doesn’t seem as though she knows what is going on. She looks in the mirror; she sticks her tongue into an eyelash curler. She’s sprawled on the floor. Sometimes, her hair is soaking wet. There isn’t much smiling, but when there is, it’s eerie – it doesn’t seem to be from happiness.

Confusing, right? People had speculated that this song was about past relationships. After watching the actual video, I didn’t think so. Neither did my sick friends. We thought it was about the relationship between a sick person’s body & mind – & how it is a continuous push/pull, love/hate relationship. You do odd things & scary things. You don’t always know what is going on. You can come across as being scary, when in reality, you are trying to stay alive. Your normal is someone else’s nightmare.

This is in no way meant to glamorize illness. I don’t believe that was Selena’s intention, either, if my theory is correct…maybe I’m completely off the mark, but I don’t think that I am.

But why do I think that I’m right in assuming that Selena’s “Fetish” video is about her illness? Because of an Instagram post she made very recently:

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Selena’s fans have been speculating about her absence from the pop culture world. She hasn’t been promoting many of her new projects – she’s been recovering. From a kidney transplant.

When I saw this post, I had to sit back for a second. I truly do believe after seeing this that Selena’s song is about dealing with her illness. After sitting back for a while & tying my own experiences into what I took from the music video, I came up with this:

this past year i was VERY sick – whole sophomore year of university. i lost about 20 pounds. i was on chemo pills. at one point, i was having surgical procedures every 4 weeks. i woke up from one feeling like my throat was on fire; i couldn’t breathe. i was confused because the procedure had nothing to do with my throat. i asked the nurse why. she said that i was so thin, my heartrate scared the doctor. they were afraid i’d die on table. so they intubated me; hence the sore throat.

i remember being in my bathroom at school, on the floor at 3 a.m. sobbing, SCREAMING. once, my mama was afraid because i’d texted her that i wanted to die, but i fell asleep before i could tell her i was ok. she thought that i was dead. i woke up to the cops at my door.

i did very weird things with my body. i still do. i move & dance in odd ways. in march, i stared at my naked body in the mirror & i PUNCHED the right lower side of my abdomen. i punched hard. that’s where my disease originates. i secretly hoped something would rupture. i wanted to die.

i have memories of being zoned out on pain meds; listening to the doctor telling me that my disease had given me arthritis. i would no longer be able to be a violinist. it was this weird, hazy, dream-like state. sometimes i feel like i am still in it. my illness is still here, after all.

in this video, selena’s staring at herself in the mirror. she’s on the floor a LOT. she’s almost always inside/near a bathroom. she’s sick; she’s twisted, yes. she bites a lipstick; she puts her tongue in an eyelash curler just because. when your body is going to shit, your tongue doesn’t matter. who cares if you’re in a subzero freezer, eyelashes brittle, smile frozen, when it doesn’t matter in the end?

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you can try to push away illness out but it WILL come back. chronic illness has a fetish for your body. it will always be there, no matter what.

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i don’t know how to close this. i’m trying to say that this is a very raw perspective on chronic illness. it’s an ugly, twisted, experience. on the floor in a beautiful dress – that’s wet from a shower you were too weak to undress for. you can still throw a party, though – & you will be the life of it. 06-fetish

i read selena got a kidney transplant this summer. i cried. then i wrote this.

“Can’t see a point in blaming you/If I were you I’d do me too” is probably one of the most significant lyrics in the song (for me). Why?

First off, the song in no way glamorizes sickness or illness. We see Selena in despair, we see her in distress, we see her in pain. There is no implication – at all – that Selena’s “experience” inside this random house is enjoyable, glamorous, or, God forbid: “cute.”

However, those lyrics are the ultimate sarcastic laugh at one’s own illness – something I can relate to in some capacity. Of course you picked me, I think. Why wouldn’t you? That’s because the way I look today…I’d pick me, too.

I am sending my best wishes to Selena as she recovers. A transplant is a devastating shock to the body, & it is an extremely difficult thing to recover from – both physically & mentally.

However, Selena speaking so frankly about her illness (& transplant) brings me hope – hope that more celebrities will speak up about their illnesses. AS more celebrities speak up, more “ordinary” people will speak up. I have hope that chronic illness – invisible or otherwise – will become more widely discussed in the upcoming years. I want to be part of it. I am trying my very best to do so.

Love,

Sof ❤

Side note:

THIS IS IN NO WAY MEANT TO GLAMORIZE CHRONIC ILLNESS. As someone who has spent many nights on the floor of their bathroom, crying in pain…I promise you that. I don’t think this music video glamorizes it, either.

I am self-injecting the 4th dose of my medication this afternoon. My blood levels were dangerously high or low when I was on other medications. This one is seeming to do the trick. My blood has stabilized. I am working on gaining energy & weight. This will take time, but seeing public figures speak so frankly about their personal experiences with illness – no matter how small or severe! – helps remind me that I am not disgusting, weird, or odd for having what I have. I got a wild card. So did Selena – so did thousands…millions!!! of other people.

-S