iPhones, Choices, and Clueless Men from Utah

Early this morning, while I was taking my pills, House Oversight Committee Chairman Jason Chaffetz went on television to talk up the GOP’s new plan for healthcare.

If, like me, you have a chronic illness, you’ve probably been on the edge of your seat watching the news unfurl about the new Republican healthcare plan that some are deeming Trumpcare. And after an early look at the plan, it seems we’ve had good reason to be worried. It’s a lengthy document, but Vox has a really handy explainer here.

There are a number of things about this plan that frighten me, but before I even had a chance to examine it in full, I watched the now Twitter-notorious Chaffetz interview in which he said something that I haven’t stopped thinking about all day.

“Americans have choices, and they've got to make a choice. So rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own health care.”

I immediately balked. Dude may as well have said "Let them eat cake." I’ve known Chaffetz to say some pretty offensive things in the past, but was this man honestly comparing the cost of healthcare to the cost of a fun new tech gadget? And furthermore, was he implying that the people like myself who are struggling to pay their medical bills are simply fiscally irresponsible?

The only explanation I can think of for such a completely callous lack of compassion for the sick and disabled is that Jason Chaffetz is superhuman. He has never gotten ill, or broken a bone, or had a loved one suffer from an unexpected heart attack. He’s never contracted a virus, and he wasn’t born with a lifelong, incurable illness with expensive medications.

And to that I say, good for you, Jason! I hope you live forever like the family in Tuck Everlasting and you never have to pay a single medical bill and you can use all that superfluous cash to buy thousands and thousands of iPhones and put them in designer cases. But for the rest of us, compassion would be nice. And nicer than that? Some sign that you’re in touch with reality.

Because reality is this: people who are struggling to pay their healthcare aren’t lazy. They aren’t spending their money on the wrong things. It absolutely does not compute to say that because you have made other purchases in your life that you don’t deserve to live, and to live with a reasonably good quality of life.

It’s probably easy if you’re healthy and your family and friends are healthy to think it’s as simple as Jason thinks it is. But here’s the thing: health is a privilege, and it’s one that can be snatched away from you at a moment’s notice and without clear reason. I’d challenge any healthy person to imagine what they might do if they were told tomorrow that they have a lifelong illness that costs $30,000 a month to treat –– because trading in your iPhone isn’t going to cut it.

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.