I'm A Comeback Kid

It’s fair to say this past year has been one of the most hellacious of my life. 2016 seems to have sucked for everyone –– from losing some of Hollywood’s greatest legends to losing our goddamn minds at the polling place, this is the year that launched a thousand memes about the sheer garbage fire of it all.  

Behind probably only the year my parents got divorced, this year is number 2 worst ever. It could have it’s own trophy for shittiness. And it’s easy, when you’re having an unfortunate series of events, to not look on the bright side. When I’m doubled over in pain or trying to figure out how to pay exorbitant medical bills, people who talk about looking on bright sides make me want to punch them in the face. Hard.

But lately I’ve taken to being that person for myself, and as it were, it’s nearly physically impossible to punch yourself in the face. As I’m on a self-described “upswing” from my personal longest flare ever, it’s a little easier to find the bright sides. It’s easier to reflect now on the things the last year of garbage has brought me–– aside from painkillers and a geriatric bedtime.

This year has brought me new skills. I’ve gone from a girl who got dinner from her local taqueria several nights a week (and pizza rolls for the rest) to a girl who is currently multi-tasking–– writing while keeping an eye on my spinach tortellini soup. I taught myself how to cook. I joined a gym to fend off all the prednisone weight. I took up meditating to keep myself from going insane with all the time I spent in solitary, sick kid confinement. This year forced me to become an adult in ways I otherwise would have continued putting off for another decade.

This year brought back old loves. Not the literal, romantic kind because hey–– I spent most of this year chilling in pajamas and it hasn’t been super sexy. But as an English major and major book nerd, I spent the first 22 years of my life reading incessantly, before life and a full time job got in the way. Being sicker than usual brought me back to reading. I’ve read an impressive amount of books in the past year and have no intentions of slowing down anytime soon.

This year strengthened bonds. They say you find out who your friends are when times get tough, and that’s been abundantly true. I’ve solidified the fact that my “ride or dies” are actually down to be there for the dying in pain part. My best friends still want to be my best friends, even when I’m too sick to go out and be a very fun friend. I have rarely felt quite so loved as I have in the last 10 or so months.

This year taught me appreciation. I will never again view my body in the same way. I’m not saying I’m about to go train for a marathon anytime soon, but I’ve gained a new appreciation for the things I can do physically. My body is like the Little Engine That Could, working way harder than everyone else’s just to keep me functional. Since I now know what it’s like to have days (or months even) where walking up a flight of stairs is hard, I am now decidedly here to make the most of the good days–– which includes saying yes to things I never thought I would, like signing up for a ballet class, and climbing a rock wall, and planning my first trip alone abroad.

I like to think I’m still myself in all the essential, important ways. I’m just maybe a better, more grateful, better educated me. I’m never going to be one of those people running around talking about how I’m “grateful for my disease.” If I had 3 wishes with a genie right this second, wish number one would absofuckinglutely be that I wish I was healthy. But since genies seem to only exist in Disney movies, I’m accepting things and moving on, and trying to catch some bright sides along the way.

My Official List of Band-Aids

When you have a chronic, incurable disease, treatment is an interesting thing. A lot of people find treatments that put them in remission –– sometimes for months, sometimes for years. I haven’t found that magic drug yet, but because of that, I’ve found a hell of a lot of band-aids.

Band-aids are what I call the things that aren’t going to put me in remission –– they’re not a new biologic or a fancy new pill, but they’re the little products and behaviors I use in the meantime to make life bearable (or great, depending on how good the given band-aid is.)

So in honor of Crohn’s & Colitis Awareness Week, here are some of my favorite band-aids. Feel free to seek them out yourself, send them to a loved one in pain, or just add this to your list of “Things I am Buying Sam for Christmas,” since everyone clearly has a list like that.

Just imagine I'm Oprah and everything in this post is like, two thousand dollars.

David’s Tea - Detox Tea

I will swear by this tea to my grave. I think it may be intended for people with hangovers, but it calms my stomach like no other beverage available. I used to drink a ton of ginger ale in a quest to “calm my stomach,” but I think I was really just ingesting a ton of sugar. This tea is a bit pricey, like all specialty, loose-leaf teas, but I find it to be worth it because it gets me through so many terrible moments. It doesn’t have a strong taste –– it’s a green tea with some other mellow things thrown in, and it truly subsides a stomachache like nothing I’ve ever encountered.

Dr. Teal’s Epsom Salts - Eucalyptus & Spearmint

If you’ve ever done your research on epsom salts I’m probably not telling you anything new when I say Dr. Teal’s is the best. One common extraintestinal symptom of Crohn’s (and a common symptom of many other autoimmune diseases) is joint pain. Epsom salt baths work wonders to temporarily –– remember, band-aid –– relieve that pain. They are also not the kind of bath salts that make you eat a guy’s face off. Grab a bag, a pretty smelling candle, and a playlist full of Sara Bareilles and get your relaxation on. Fancy bath tub not included if, like me, you live in a city apartment.

Microwaveable Heating Pad

I have a wide variety of heating pads. I have an electric one that I love –– it provides the most heat for the longest. But sometimes you need something more portable to soothe your aches and pains, and that’s where these little microwaveable bean bag types come in. The best part? They’re all over Etsy in cute patterns and ~relaxing~ scents. I got mine here, and it's fantastic.

Gentle Yoga

When I was in the height of my latest flare, I was a blob who couldn’t do much of anything, let alone work out. That being said, if you don’t want to develop bed sores at age 24, you find a way. My way was yoga specifically for IBD, because you can find yoga for any specific purpose on YouTube. Not only is it gentle, easy movements, it also helps you gain flexibility and encourage healthy digestion. When I do it, my cats roll around on the floor next to me.

Hulu

Anyone who spends a lot of time at home –– do yourself a favor and get a Hulu membership. I also have Netflix, Amazon Video, and HBO Go. There will be days where, in spite of your best intentions, you can’t do much than zombify yourself on the couch with several heating pads. On those days, you will want a way to watch Broad City and Jane the Virgin with ease.

Insight Timer

Something that I used to think was just a joke but has actually improved my overall health immensely? Meditation. Insight Timer is a fantastic app with tens of thousands of meditations to choose from, so you can devote as much or as little time as you have. Anxious? There’s a meditation for that. Feeling a lack of confidence? There’s a meditation for that. Need help falling asleep, or waking up? There’s a meditation for that, too.

FOGO –– Fear Of Going Out

Everybody loves an acronym, and FOMO is one that even the most chill of humans knows well. A fear of missing out –– a fear of missing the coolest party of the year on the night you chose to stay in and watch the new Gilmore Girls. A fear of missing a chance at ~ true love ~ if you pass on a Tinder date with a guy who likes the same bands you do. A fear of missing a great sale, or a funny movie, or just a solid night out with friends that you’ll replay over and over on snapchat later if you don’t go.

Chronically ill people like myself experience FOMO all the time. Being sick (very) often hinders our ability to socialize like fully able people, and I for one can say I’m constantly wondering what funny story or lifelong memory I’m missing out on when my intestines force me in on my couch on a Friday night.

Dear Crohn's - please stop being such a drag on my previously stellar social life.

But I’ve noticed that chronic illness has also gifted me another horrible acronym –– FOGO. Fear of going out. Because as much as I want to go dance to Rihanna and drink a vodka soda and be there when someone pukes off a balcony, the FOMO is often outweighed by the FOGO. Fear of going out. Fear of thinking I feel well enough only to be slapped in the proverbial face with pain that I can’t bear out in public.

I always say that if I could have one superpower, it would be teleportation. My general reason is because I live in Chicago, and during Chicago winters nothing sounds more lovely than teleporting home and never touching my boots to snow. But a slightly more real reason is that on more occasions than I could possibly count, I’ve found myself in situations where I’m a lengthy Subway ride away from home and I’m doubled over in pain.

The panic that comes with being in pain in a public setting is immeasurable. That’s why it’s usually easier to stick to my couch, where if the pain comes, I can ride it out with the comfort of my own heating pad. But what happens if I’m out to dinner with friends of friends? What happens if I’m on a date? What happens if I decided to try a cool new bar that’s not at all close to my house, and now I’m clutching my stomach in the fetal position on a 25-minute uber ride home?

Crafting an "I Miss You" letter to vodka sodas.

These are all the things I think about when I’m weighing whether or not to go out –– the FOGO versus the FOMO. It’s a toss-up on any given day which side of me will win: the adventurous 20-something who just wants to drink and dance and say “fuck it,” or the responsible sick girl who knows that the pain can come at any time and in any circumstances, and Crohn’s disease doesn’t care that you’re on a really solid first date with a guy who doesn’t brag about his summer abroad in Spain.

So I’m not saying I always stay in –– far from it –– but that while my peers are asking themselves what they should wear or what time they need to leave the house to get to a party on time, people with chronic illnesses have a slightly different prep routine that involves making sure you have emergency pain meds on you, knowing the quickest route home if you need it, and keeping your fingers crossed for a night of normalcy.

Anger is a Productive Emotion and You're Allowed to Feel It.

Anger is a productive emotion and you’re allowed to feel it.

If I could, I would stitch that on a pillow and give it to everyone I know. I would also put said pillows in every room of my house.

That’s how important a reminder I think it is. I’m a big believer in letting yourself feel your emotions–– acknowledging when life is great and you’re happy, letting yourself wallow for a few hours if you need to when you’re sad. But anger is a tougher emotion for me. It’s not as palatable to the general public, so sometimes I stray from it and pretend not to feel it.

I have the opposite of “resting bitch face.” This is to say that even if I’m in a terrible mood, you’d probably never know, because the face I’m showing the world is at best, happy, and at worst, neutral. Never angry. Never upset. Never impatient. Never an emotion that might inconvenience.

So what happens when you have every reason and right to be angry? There’s such a push for positivity, which I think is great. Positivity gets me through 99% of my days. But what about the other 1%? The days where you wake up and your symptoms are so bad you can’t get out of bed? The days where your steroid-induced tremors cause you to drop a cupcake in your own lap at a family party? The days when it feels like life is one step forward and five steps back?

Do you push yourself to look on the bright side and be more positive? I’ve tried that, but in my experience trying to force yourself to feel feelings that aren’t authentic to you at the moment will generally just make you feel worse. So I’m trying something new. I’m giving myself permission to just be angry.

I’m giving myself permission to vent, whether it’s to my best friends or my mom or my journal (or this blog). I’m giving myself permission to eat a really big piece of cake and listen to “Don’t Hurt Yourself” on repeat and channel my inner-scorned-Beyonce. I’m giving myself permission to lean into the anger and truly feel it. Because when you’re young and sick and feel like you’re missing out on real life, you’ve got some stuff to be angry about. I don’t carry it around on a daily basis and let it define me, but on the particularly bad days when anger rears its ugly head, I no longer try to force it back down into a neat little box. I let it out, and it feels good.

So if you’re angry at the world on a given day–– because you haven’t gotten the promotion you deserve, or because you’re feeling underappreciated in your relationship, or because a sexual predator just won the presidency and you can’t even win a freaking sweepstakes–– really feel it. And use that anger to fuel something else, whether it’s a creative pursuit, or a foray into political advocacy, or just a really great shower sing-a-long to Alanis Morissette (the ultimate “angry and not sorry about it” woman of our time). Anger, when harnessed correctly, can make us powerful little storms, as long as we know how to control it without letting it control us. So be happy, be sad, be mad–– be whatever it is you are today, and know that it’s okay.

This is Illness in Trump's America.

I am never allowed to forget my illness. I am never allowed to turn away. Every day when I wake up and walk over to my painstakingly organized pill box, I am reminded. Every time I have to plan life around a different specialized doctor’s appointment, I am reminded. Every time a happy occasion or a night out with my friends is ruined by extreme pain, I am reminded.

And now, every time I turn on the news and see our new president-elect, I am reminded.

I am reminded that (half of) the American people chose to elect a bigot. A man who mocks disabled people, who speaks about people from other countries in a way that is terrifyingly similar to Hitler, who has sexually assaulted women. And a man who has stated again and again that one of his first acts in office will be to repeal the Affordable Care Act.

While the term “Obamacare” gets thrown around a lot, I’ve found that in conversation many people don’t actually seem to know what it means. While I am not on Obamacare, I do benefit immensely from some of the law’s major tenets. “Benefit” feels like a funny word for it, though –– benefit implies I’m getting something fun and extra, like a cupcake or a 401k. The “benefits” I receive from the ACA keep me alive and well enough to live a life that most people take for granted.

Thanks to Obamacare, companies can’t discriminate against me for my pre-existing condition. Without this aspect of American healthcare, I could easily be refused insurance by any company simply because I am actually sick. Obamacare also bans providers from instituting lifetime caps on benefits. Under the previous system, insurance companies would cover you up to a certain dollar amount, and then you were on your own. Spoiler alert: short of actual millionaires, I don’t know of any chronically ill or disabled people who can afford to be on their own.

So on election night, after they announced Pennsylvania, I cried. I cried openly and without abandon, and I haven’t stopped much since. I cried for women’s right to choose. I cried for gay couples who will have people trying to invalidate their love. I cried for Muslims, and for Mexicans, and for black communities everywhere. And I cried for my future.

I cried because I was the first kid in my class to learn how to read. I cried because I was the one who won the spelling bees, and kicked the ACT’s ass, and stayed up past my bedtime reading about presidential history and how we invented peanut butter. I cried because I have never stopped working hard, whether it was getting a 4.0 my senior year on 19 credit hours or beating out thousands of other young writers to secure an internship with a national news publication. I cried because I am 24 years-old working in a great job that I love and am good at.

I cried because all of that could be for nothing.

If the ACA is repealed and replaced with what the Republican Party says they want (which seems to be either a. nothing, or b., a plan without the concessions that chronically ill people need), I will hit my lifetime cap. I will hit my lifetime cap faster than you can say “pre-existing condition.” In addition to the expensive tests and procedures I get on a regular basis, I am on a medication that costs upwards of $30,000 every 8 weeks. It’s not hard to hit a benefits cap when that’s what you’re working with.

In Trump’s America, I have to pay $15,000 a month out of pocket. I cannot do that, as most people can’t. My only choice is to go off of my medication. Without my medication, I am not well enough to work. I become bedridden and have to go on disability. The little girl who raised her hand too much and always did the extra credit becomes the adult woman who can’t work. This is Trump’s America.

The past few days I’ve been thinking about what I want for myself in life. It’s not a long list anymore. I want the opportunity to be well. I want to opportunity to work hard, and save my money, and be financially free and independent. I want to be able to support my own children someday. I want the same things that everyone else has the opportunity to have. I don’t think I’m asking for much.

So while the past few days have been spent mourning the progressive and inspiring next-four-years we could have had, I no longer have time to cry. I have to work. I have to talk to people, and tell them what’s at stake.

I have to make sure I don’t let down the little girl who won the spelling bee. She still has work to do.

Get Out and Vote! (Or Stay in and Vote!)

This weekend I was having too rough of a symptom time to go partake in Halloweekend activities with friends –– but sitting on my couch watching The Craft started to get a little old around hour twelve or so. So I decided if I had nothing else to show for my weekend, I’d go vote. Early.

Illinois (where I live) is one of many states that allows early voting. Since I’m only 24, I’d never actually voted in person for a presidential election before. I’d voted in the primaries, and some local elections, so I think I underestimated how crazy election day would be. That underestimation was clearly evidenced in the fact that when I got to the library on a random day of early voting, there was a line out the door.

Aside from a blip on the radar of this weekend, my symptoms have been mostly improving, so I hunkered down in line with a book and waited. As I was waiting, I started to think about how other chronically ill people (who aren’t as lucky to be “on an upswing” like me) might deal with long lines at the polls. Disabled people are a hugely important voting block –– because duh, we have a lot at stake here. But standing in an hour long line isn’t exactly sick-kid friendly for a lot of people.

Instead of giving out stickers, Chicago gives you a wristband so you can feel like you're at a weird, political Coachella

That’s where it becomes exceedingly important to know your options. Know whether your state has early voting, where lines are likely to be shorter and more manageable. Know that employers legally have to give full-time employees time off in which to cast their ballots, so you don’t need to create a crazy hectic day for yourself trying to get your vote in. Know your state’s rules on absentee ballots –– for people who are ill, these are a freaking godsend. When you can barely leave your house for doctor’s appointments, leaving to go struggle around a crowded polling place is probably out of the question. As it were, though, you can vote from your couch!

There’s a lot at stake for disabled people this election (which is why #CripTheVote has become so popular). People’s access to healthcare depends upon it. Funding to the government for things like disability benefits depends on votes. Having a president who respects you as a person (and doesn’t mock disabled people in public) depends on it.

Everyday life is harder for people who are ill, and life comes at us fast. Don’t let that get in the way of making your voice heard. Don’t let an unplanned trip to the ER or a horrible symptom day keep you away from the polls –– vote now, if you can. Because while a lot of healthy, upper-middle-class white dudes can afford to sit this one out because their rights aren’t at stake here, we definitely can’t.

Not sure where to go to find out where, when, and how you can vote? Head over to IWillVote.com and find your early (and Election Day) polling places. You can also check out each state’s absentee voting rules on Vote.org.

Do it for your rights, the rights of patients like you, and for the sweet “I Voted” sticker Instagram post.

I'm Not a Hypochondriac.

I’ve always been a sickly kid.

I had pneumonia 9 times before the age of ten. I grew up using a breathing machine every few months. When I was fourteen, my eyes were mysteriously crossed for three months, to the confoundment of every doctor I visited. For two years in high school I suffered from debilitating chronic migraines. I’ve had pretty much every test and procedure a human can have at this point, from EEGs to CTs to colonoscopies.

And when I was 17, I was diagnosed with Crohn’s.

My time as a professional sick kid started before I could walk or talk

When you’re sick all the time, people tend to want to find simpler explanations. And the simplest explanation of all, it seems, is that it’s all in your head. It’s a lot easier for people to stomach that you want attention, or are just a bit anxious and neurotic, than that a teenage girl is just legitimately ill, and often.

So because of that, and because it seems I’ve been sick with some odd illness or another since before I could talk, the hypochondriac comments have also been a hallmark of my existence. It doesn’t help that as an adult, I’ve also suffered from anxiety and panic disorder. If you’re mentally ill, it’s super easy for everyone from doctors to acquaintances to chock up your physical symptoms to something you’ve made up in your mind.

But here’s the thing–– being chronically ill sucks. It’s physically trying because hey, pain, but it’s also mentally trying for a number of unfun reasons. And one of the biggest reasons? Feeling like you have to prove to people how sick you really are.

When people reach for the hypochondriac thing, it makes patients feel like they have to prove themselves–– and believe me, they can. My illness is “invisible,” but I could show you blood panels that “prove” just how high the inflammation in my body is. Better yet, if I’m feeling particularly sassy, I can show you a picture of the inside of my colon. Because I have it on my phone.

Point being, you should never be making an ill person feel like they have to prove themselves to you. I know it sounds unbelievable that I’m flaring yet again, or that I’ve got another infection. But since I’m the one who has to deal with that physically, instead of opting for emotions like disbelief or skepticism, go for support. Honestly, the best thing a person could give most sick patients is unyielding support and belief.

And when you don’t believe someone who’s sick, you’re probably also making them doubt themselves, which can be bad for their health. Because I had grown up with bad internalized feelings surrounding feeling like a hypochondriac, it took way longer than it should have for me to be diagnosed with Crohn’s. I thought having stomach aches on a daily basis and not being able to eat was somehow a thing I had done to myself. That’s why, while my diagnosis was one of the hardest things I’ve ever dealt with, it was also a relief–– I wasn’t crazy. There was something actually, medically wrong.

While there are always going to be people out there who exaggerate their symptoms for attention or who genuinely are hypochondriacs, the number of those people is much smaller than the number of people actually suffering every single day from random diseases and weird aches and pains. So before you call me a hypochondriac, think about just being a kinder human instead. Unless of course you really want to see the inside of my colon, because we can make that happen, too.

Sisterhood of the Traveling Pajama Pants

A little under a year ago, I was going through the chronic illness thing alone. Aside from twice-yearly gastroenterologist visits where I got my magic pills refilled, I rarely talked about having Crohn’s. Hell, sometimes I even forgot I had it. It was a magical time where I dated and danced and drank and ate nachos like there was no tomorrow.

But right around last Thanksgiving that all started to change. My magic pills stopped working. I was (attempting) to live my best Los Angeles life when my symptoms took on new levels of life-sucking. And then I ended up in a hospital a few miles from the beach wondering how things got so far from the life I’d imagined so damn quickly.

It was a few months later that I began blogging about my experiences with chronic illness. As a writer who was too distracted by my symptoms to think of much else, it seemed like a natural creative outlet for me–– and a great way to avoid ranting my loved ones’ ears off.

In the months since, my symptoms have gotten better, and then way worse, and then better again, and then worse, and then–– you get the idea. Life is a weird roller coaster, my particular ride just happens to involve more pain meds than the average. But the blog part of this crazy ride of life has actually brought me something really beautiful: the online chronic illness community.

Unless you’re a sick kid yourself, you probably aren’t aware that #Crohns and #ChronicIllness are super popular, active hashtags on instagram. #ChronicLife will get you a constant stream of results on Twitter. Facebook is full of private support groups for people with pretty much any kind of illness you can imagine.

I spent the first several years of my disease feeling pretty alone in it–– I didn’t know anyone in real life who had it, and all the articles I read online were full of stuffy medical jargon. Finding the little corner of the internet devoted to real people with the same problems I have has been comforting. If I’m having a bad day, one visit to the #Spoonie hashtag will net me dozens of people to commiserate with. If I’m having a good day, I can spread the positivity and love the same way.

Infusion day selfies are a thing, who knew

So while my last post may be about how the internet is ruining us, I also believe the inverse: the internet has brought me some really nice people who know better than anyone else how much of a celebration it is to taper off of prednisone, or how bad it sucks on days you feel like you don’t own enough heating pads.

And in fact, blogging about my situation has also opened my eyes up to the fact that I was previously mistaken–– I know plenty of people in real life who are dealing with chronic illness. They’re just doing it pretty quietly, the way I used to. I’ve had old middle school classmates reach out, family friends, people I met once at a party. And the thing is, even though we may have nothing else in common, having this one huge thing makes all the difference. It bonds us in a weird sisterhood (or brotherhood, hey dudes) of people who “get it.”

So to my fellow chronic illness-havers, out there, keep on keepin’ on. Keep sharing your stories of how to make Humira shots less painful and what foods you make that don’t rile up your intestines and what exercises are easy on your joints. Keep sharing pictures of you on good days playing with your cute dogs or out for drinks with friends or binging Netflix because you want to, not because you don’t have the energy for anything else.

Thanks for the constant reminder that no one is ever as alone as they might feel, and that the roller coaster has as many ups as it does downs.

***

In a bit of shameless self-promo, the lovely people of the online chronic illness community nominated me for a health activism award. If you feel so inclined, you can vote for me here. Leonardo DiCaprio and cute kittens everywhere will thank you.

Can I Live?

The internet is ruining us.

The internet is my lifelong bad boyfriend. I love it, and crave it’s approval, and at this point, it literally pays the bills. 99% of the time, I think the internet is the fucking best–– especially when it gives me cat gifs or videos of porcupines eating corn on the cob.

But as with almost all great things, there’s a downside. When you have access to everyone’s thoughts and opinions, you have access to everyone’s thoughts and opinions. And sometimes, those opinions suck.

Take random internet opinions (like mine) with a grain or 50 of salt.

Back yonder when people still actually had to show up to plans they made because they couldn’t bail via text, the only opinions on our choices that really mattered to us were those of like, our family, our good friends, and our dogs. But now, thanks to the inconceivably massive reach of the internet, opinions are flying at us from all directions, all the time. People who think we should all be gluten free versus people who think gluten allergies are made up. People who think breastfeeding is the only surefire way to make sure your child doesn’t grow up to be a serial killer. People who think Scott Baio deserves a shot at political commentating.

The thing about all the people behind screens with their opinions is that they don’t know you. Or even if they do–– even if they’re the pastor’s wife at your church or your best friend’s new girlfriend–– they don’t necessarily know what’s best for you. We choose who to confide in, who to ask for advice, for a reason. We pick our best friends because we trust them, and we know they know us better than anyone else. I know which one to go to when I need a sympathetic ear. I know which one to go to when I have an ill-advised crush. I know which one to go to when I need someone to pull me back to reality. And none of those people are bloggers or twitter personalities or talk show hosts.

When you’re chronically ill, you’re bound to come across just about every opinion possible on how you should be living your life–– not only socially and politically, but also health-wise, which at best is annoying and at its worst can be dangerous. You’ll have people blogging about how yoga cured them, or trying to sell you a diet plan, or worshipping at the altar of essential oils. You’ll have friends of friends sending you articles about “cures” and randoms implying that you brought your disease on yourself by eating too many carbs or spending too much time watching TV as a kid. The thing about these opinions is that for pretty much any opinion that exists on the internet, the inverse of it exists as well. So maybe put down the Google and just talk to your doctor and some fellow patients and friends that you really trust.

I trust this one's opinion because she's known me for as long as I've been alive.

So next time you’re on the other side of things and tempted to take a hard stance on something and make a sweeping judgement, bite your tongue–– both so you shut up and so you start having a Pavlovian response between being judgey and being in serious mouth pain. If you hear someone talking about how they plan to adopt, remember that you don’t know the ins and outs of their situation and refrain from yelling “BUT YOU’RE MISSING OUT ON REAL MOTHERHOOD,” like a giant douche. If someone tells you they send their kids to park district pre-school, don’t launch into a lecture about how kids need to learn Portuguese by age four. If someone tells you they don’t eat meat, maybe just live and let live and don’t talk about how great the lamb you had last night tasted.

Moral of the story here is try not to be a dick, let people live their lives, and if you need a break from internet opinions, turn your phone off and play with your cats until you forget your step-grandma’s judgey, Trump-supporting Facebook account exists.

C’est la vie, yo.

I'm Bad At Keeping Secrets

I’m not someone who has many secrets–– clearly, considering my social media footprint is as big as a continent.

But I do have a few, like the level of embarrassing songs I sing while cleaning my house, or the 90’s celebrities I still occasionally have dreams about marrying. My biggest secret as of late? I’m feeling better.

You’re probably asking yourself why the hell that would be a secret. After 8+ months of Saturday nights in, a monumentally bloated face, and a diet more restrictive than Beyonce-inspired veganism, wouldn’t I want to shout “I’M FEELING BETTER” from the rooftops?

Other things that will make you feel better: new lipstick, dramatic hair changes.

Yes and no. I’m thrilled to be feeling better. I’m thrilled to be weaned off prednisone. But what most normal-health-functioning people don’t realize is that for the chronically ill, “better” is a spectrum. I don’t go from sick to well in a day flat. When I say “I’m feeling better,” it simply means that currently, I’m having more good days than bad days, which is something to celebrate.

But if I take that celebration public, I’m nervous about the response. I’m nervous that people will assume “better” means I’m back to my vodka drinking, burger eating, dancing-til-the-bars-close self (and believe me–– I wish that were the case. That girl was fucking fun.) I’m worried if they get it in their heads that I’m “better,” they’ll assume all the bad days are behind me. They’ll expect too much, and they’ll be disappointed.

So I guess I’m outing my secret right now–– I’m feeling better. My hair stopped falling out. I’ve started to drop some of the weight prednisone packed on me. I’m getting more sleep. I can occasionally eat candy and chips and not worry my intestines are gonna fall out of my butt as a result.

On the flip side, the fatigue still lingers like a bad ex-boyfriend who won’t stop texting me. I still go to bed at around eight most nights. I still take ten pills a day, on average. I still have to stick to a diet of mostly bland foods like fish, bread, and eggs. I’m still dying for a cheeseburger and a big ass sangria.

Feeling good enough to spend the day with my best friends and their moms a few weeks back

So maybe instead of saying I’m better, I’ll just say I’m on an upswing. I can finally see the light at the end of the tunnel that’s been this flare. I know now that an autoimmune disease isn’t something you can just ignore and hope it goes away–– it’s part of my life, and I’ll always be at risk of another life-altering health situation. But I’m choosing to be cautiously optimistic about the parts of me that are feeling better. And I’m choosing, based on writing this, to stop keeping it a secret.

So HEY GUYS, I’M FEELING BETTER. Let’s just celebrate the news at like, 5 PM so I can still be in bed by 8.

The Economics of Illness

Being sick is expensive. Being chronically sick is extra expensive, because it never ends.

Among the many parts of being sick that I often think about when I’m thinking “damn, this is unfair,” that’s honestly what I think about the most. Being sick is exorbitantly, life-ruining-ly expensive.

There’s the typical costs that everyone probably associates with an illness–– hospital visits, fancy new medications, procedures and CT scans. Thanks to insurance (LITERALLY thanks, Obama) these costs are seriously lowered, but “lowered” from their crazy high initial costs still comes out to “too much money for a 24 year old with student loan debt.” I think that’s the technical total on my last hospital bill.

Those are what we call the direct costs. It’s estimated that the average patient with Crohn’s pays about $18,000 per year in direct costs. Basically, if I didn’t have Crohn’s I could take the money I saved and buy a brand new Volkswagon Jetta every year for the rest of my life. I would love a goddamn Jetta.

Hospital visits ain't cheap, but they are incredibly stylish.

But that’s just direct costs–– this doesn’t include the many other things the chronically ill drop cash on. Here’s a quick rundown of (usually expensive) alternative treatments and things that help ease the pain: essential oils, epsom salts, icy hot patches and creams, heating pads, special health foods, supplements, acupuncture treatments, therapy, etc. Every human with an Instagram these days seems to be trying to sell me a protein shake or a cookbook that will cure me. But the thing is, a lot of times when you’re sick, you’ll try anything that just might make you feel better. And that keeps racking up your costs.

At the end of the day, sick people are dropping fatty cash trying to get to the minimum level of functioning at healthy people wake up with every day.

I plan for my future knowing that while my peers will be making car payments and whittling down their student loans, I’ll be doing all of those things plus trying to pay to keep my Crohn’s at bay. Chronic illness is like having a really shitty extra monthly utility bill that you didn’t ask for, but instead of giving you A/C, it keeps you alive. That’s one of the reasons I’m a politically active person–– it’s easy to think that things like health insurance don’t matter all that much until you’re the one who needs help. It’s easy to think your vote doesn’t matter when you’re healthy, but for people like me, laws like those that make it illegal for companies to discriminate against pre-existing conditions are of phenomenal importance.

Without health insurance, the liquid gold they pump into my veins every 8 weeks costs a cool $20k

If I don’t have insurance, I can’t get my medication. If I can’t get my medication, my body stops tolerating food. If I can’t eat, I can’t live and work and be a functioning member of society.

So when it comes down to it, it’s not just impersonal dollars and cents and figures presented in pretty charts on MSNBC. It’s people like me, working and saving and buying kombucha.