Independent Women, Pt. III

There are a lot of "hard parts" to being chronically ill. The kick to your finances is difficult to manage. The blow to your social life is mentally trying. Hell, physical pain is no picnic, either. (Mainly, though, I miss the ability to eat movie theater popcorn with a heart attack amount of butter.)

But one of the hardest parts for a lot of patients is the way being chronically ill can strip you of your independence.

I have always prided myself on being an independent person –– living on my own, taking care of myself, paying my own bills. Going to college where I didn't know anyone and once even attempting to move cross-country without so much as a friend. Not needing another person to take care of me has always seemed of paramount importance. That Destiny's Child wisdom really stuck with me, I guess. Whether that translates to being a strong, independent woman who don't need no man or just being a grown-up who doesn't need mom and dad footing the bill anymore, independence –– both emotionally and financially –– was always top goal for me.

I hear my healthy friends talking all the time about what adventure they'll go on next. How they'll quit their job to do some long term traveling, or what city they'll move to for their next chapter of adulting. There's a saying that goes "Health is a crown that the healthy wear, but only the sick can see it." The things that healthy folks take for granted –– like being able to pick up and go at any time –– are aspects of independence that sick people just don't have. And we see it. And we wish we had it. And we're jealous, even though jealous isn't always the coolest thing to admit to being.

While it's not impossible to do those adventurous things with a chronic illness, it's a hell of a lot harder. When you see just how bad your illness can get, and just how quickly your health can be taken from you, with little to no warning, you lose a little bit of that boldness. Traveling for a year turns into, "Well how will I get my monthly infusions when I'm in Laos?" And picking up to move to a new city where you don't know a soul goes from romantic and wanderlust-y to, " Who's going to be my emergency contact when I end up in the ER again?"

One of the biggest life-changers I've had to come to terms with since getting really sick is that I need help. Even when I don't want to need help. Sometimes I need my mom to drive me home from a colonoscopy, because they don't just let you hop on the CTA when you're fresh off anesthesia. Sometimes I need my best friend to drive me to the grocery store when a flare is severely fucking with my joints. Everybody needs somebody, sometimes, right?

When I was brand new to LA and barely knew a soul, I ended up in the hospital and supremely lucked out –– my dad just happened to be visiting that weekend.

And while needing people from time to time is a universal sentiment, chronically ill or not, it does make me occasionally mourn the badass life I might be living if I didn't need people in such a literal, immediate, and physically present sense. If I just needed emotional support from friends rather than literal caregivers. Maybe I would go teach English in South America for a year! Maybe I could risk a lapse in health insurance long enough to go be an unemployed, surfer-vagabond-guy in Australia for a bit! But as reality would have it I am here in Chicago, about an hour away from my childhood home, and trying to find other ways to assert that independence.

If chronic illness does anything, it makes you think outside the box.

It's okay to mourn the life you might've had. It's also okay to accept the life you do have. And I know in my soul I'm the same independent, adventurous girl I've always been –– now I just need to schedule those adventures around treatments.

May is IBD Awareness Month! (2017 Edition)

Happy IBD Awareness Month!

Or maybe “happy” seems like a slightly-off way to put it, as we would all be much happier if diseases such as these did not exist and we therefore did not have to be aware of them.

It is IBD Awareness Month!

Better.

Awareness months are a little weird, because you’re like 1 - why do I need to be aware of this? There are so many things to be aware of. And 2 - How do I help and become more aware? I’m busy and I have like three episodes of The Handmaid’s Tale to watch later.

Last year walk day was like 102 degrees and we still has a bunch of fun and braided each others' hair and ate tiny hummus packets

Luckily, I’m here to answer both! I operate on the belief that empathy is pretty much the most important quality that exists in the world. Without empathy for others we would all just run around doing whatever we want all the time and we’d be living in an IRL version of The Purge. Lack of empathy is how you get people like Paul Ryan existing out in the world.

And, to put it simply, awareness helps build empathy. You may have heard of a disease like Crohn’s disease in passing, or from one of those terrible commercials, but chronic diseases become a hell of a lot more real when you know someone who is affected and that person tells you their story. That’s why I’m here doing this whole thing –– sharing is hard, but if it helps educate people and bring a little bit more empathy into the world, I’m so incredibly down to take one for the team and share like crazy.

And now on to part 2 - how do you help? Well, if you’re a genius prodigy child, get to work on developing a cure, please. If you’re literally anyone else, I’m here to outline a few quick and easy ways you can help the cause. They will take like 5 minutes of your time, and you will feel good about having helped someone(s)! Like the nice warm feeling you get when you don’t let the elevator doors close on a stranger.

Action 1 - Talk to a patient

IBD affects a truly wacky number of people, but a lot of them don’t feel incredibly comfortable bringing it up in everyday conversation. Odds are you know someone with IBD, whether you realize you do or not. If you do, a quick, easy, and free way to observe the month is to reach out to that person and say hey. Ask about their health, their life, their new favorite binge watch. Chronic illness can be incredibly isolating, and having people out there who you know care about you goes miles in helping.

Action 2 - Buy a shirt!

Here comes some shameless self promotion, because I am who I am. From now until May 17th I’m running a t-shirt fundraiser with 50% of the proceeds being donated to my walk team, which directly benefits the CCFA. It’s a win-win for everyone because shirts are only $12, and you get to wear a badass design from a local artist while also helping colons. Click here to do the damn thing.

Action 3 - Wear purple on May 19th!

This is both easy and fun, because it doubles as your monthly memorial to Prince. May 19th is IBD Awareness Day, aka the pinnacle of the whole awareness month. Purple is the signifying color of choice, and if you wear it on May 19th and tag me in a selfie of you in your purple, I’ll donate a dollar to CCFA. And then you can walk around all day being like, “I’m wearing this color for charity,” and your friends and co-workers will be forced to acknowledge that you are good and kind. Last year 40 people (and a few dogs!) participated.

Action 4 - Walk with me! (Or just send money!)

For a lot of patients (especially kids), the annual Crohn’s & Colitis walk is an event they look forward to all year. It’s got a super fun field day type vibe that reminds me of the happiest days of elementary school, and it brings patients and their loved ones together in a celebratory fashion that isn’t all about being sick. If you’re in Chicago on June 10th you can come walk with me and my friends and make ill-timed intestines jokes with us. If you can’t make it, send me your pocket change! I’m a competitive fundraiser and .83 cents of every dollar donated goes directly to really awesome things like researching much-needed cures and putting on events that increase patient quality of life.

The fact that you’re here, reading my blog, probably means you’re already way more aware than the average bear (or American voter.) Pat yourself on the back, buy yourself something pretty, and then do one of the things on this list. Me and my colon thank you.

I'm Done Begging The GOP To See Me as a Person.

Jokey is my default setting. I very much subscribe to Sara Benincasa’s notion that if you can laugh at the worst moments in your life, you can transcend them. Even when the going has gotten really tough, I’ve maintained a certain level of sarcastic detachment about it all.

There have been a few occasions in life where putting on the humor mask hasn’t worked for me. One of those times was on election night. Another one of those times was this afternoon.

I have a lot of problems with the current political administration. I abhor their treatment of immigrants, I am frightened by their attitudes towards women, I fundamentally reject their loose grasp of science. There’s one issue, though, that gets really personal for me, even more than all of the rest. That issue is healthcare.

I’ve been especially angry lately, because sick people like myself have a lot to worry about from day to day. We have short term worries, like whether or not our blood work will come back okay or how we’re going to pay for groceries and this month’s prescriptions. We have long term worries, like whether or not our disease will take away our ability to have kids, or whether the meds we’re on for one condition might end up causing another.

But for the 217 members of the House GOP who voted today to strip millions of people of their access to affordable healthcare, those worries are not enough. They want you to worry that you’ll lose your house paying for your sick kid’s procedures. They want you to worry that you’ll die because you can’t afford your medication. I don’t find it one bit dramatic to say that if this legislation passes through the senate, people will die. A lot of people will die. They want you to know that because you got sick, even if it was entirely random and out of your control, that you don’t deserve your life. And they want all of this because it will get them tax breaks and a pat on the back from a president who barely knows basic geography.

Making pre-existing conditions uninsurable is turning non-lethal diagnoses into death sentences. It’s keeping diabetics from affording insulin, asthmatics from paying for their inhalers, and autoimmune patients out of reach of life-saving biologics. It’s telling me, a fairly accomplished young woman who happens to have a disease, that my life matters less than tax cuts. It’s telling a 5 year-old with cancer that even when they beat the tumors, they’ll spend the rest of their lives battling to keep a roof over their heads because they hit their lifetime benefits cap before they were old enough to drive.

But as angry as all of this makes me, I think today, an overwhelming feeling over despair took the place of anger. I truly believed in the last few days that this wouldn’t happen, because at least a few of those 217 people who voted yes would realize that they were harming real people. But then they didn’t, and I sat at my desk watching a livestream of politicians cheering as they sent millions of families to bankruptcy and patients to their death beds.

I’ve never felt more dehumanized than I have by this administration. They’ve made it perfectly clear, from their votes to their celebratory, “we just ruined the life of sick kids!” beers, that people with illnesses and disabilities are not worthy of life. They’ve made me beg to be seen as a whole person, and even then, they told me “we disagree, you are not.” They’ve gone on TV spouting narratives that sick people are lazy, that we’ve done this to ourselves by not taking better care of our bodies, that paying to keep your fellow humans alive “isn’t their problem.” And no matter how many good people you know exist in the world, I don’t have a humor mask to hide the way it feels to be told by your country that you are sick, and you are therefore not worthy of the basic right to life.

Tomorrow I’m going to try to re-channel the anger, because that’s what we need right now –– anger that fuels action. I’ll send every Republican who voted “yes” a picture of my diseased intestines. I’ll knock on doors, and write strongly worded letters, and donate to 2018 campaigns. Because angry me really wants them to know that if they’re coming for my health, I’ll spend every last drop of energy I have coming for their jobs.

Spending Time With Your Damn Self, British Edition

"Traveling alone is cool and not at all depressing," she said to herself as she embarked on a solo trip across the Atlantic.

I don’t often write about the gifts being ill has imparted on me, because they tend to pale in comparison to the trash heap of negatives that come with having a chronic disease.

Crohn’s has taken a lot from me over the years –– it’s minimized my social life, it’s taken a real chunk out of my self confidence, and it’s nabbed a lot of money I could have otherwise saved for my future. I’ve covered this stuff before. But I recently realized something that life with a chronic illness has given me –– and that’s contentment with being alone.

I’m not going to preach to you about how my illness is a gift that’s made me a better and more grateful person! If an autoimmune disease is a gift, it’s like a really ugly sweater your great aunt gave you without a gift receipt. So consider this post as me, stuck with this horrendous sweater, trying to find a use for it.

Seeing Othello and touring Shakespeare's Globe? Some of the coolest experiences I'll ever have.

I just got back from a week-long trip to London by myself. I traveled alone for practical reasons –– I’ve been itching to go on a trip, always wanted to see London, and couldn’t nail down anyone with the vacation time or extra funds to join me. So I went alone. I’ve traveled alone before, but never this far away for this long. Almost everyone, upon hearing my plans, commented on how cool and brave and adventurous it is to solo travel abroad. I couldn’t figure out why going alone didn’t seem like a big deal to me, when it did to everyone else. And then it hit me.

I spent the majority of 2016 incredibly ill and nearly bedridden. I missed a ton of work, could barely run necessary errands, and barely attended a single social outing all year. My friends and family were good about stopping by to see me, or facetiming, or sending little cheer up gifts, but the moral of the story is I spent the majority of the year alone. Not alone like, “I’m single and living alone right now because I’m a metropolitan woman in my twenties!” Alone as in, I rarely interacted with people who weren’t doctors or my cats.

There are few better ways to spend an afternoon than wandering around a big old beautiful museum –– no whispery companions required.

While that situation was incredibly trying (and a great example of what anti-depressants were made for!), I got through it because I had to. And in the interim, I developed a really valuable new skill. I developed the ability to be alone often, and not just make it through, but to occasionally enjoy solitude.

I firmly believe that learning to enjoy being alone is one of the hardest things to do in life –– and if I hadn’t had to do it via immersion therapy, without a say, I might still not be comfortable spending days at a time without my people. And I’d be lying if I said it wasn’t lonely on occasion –– on those long sick days, fictional characters were pretty much my closest friends –– but if you can learn to separate out being alone from being lonely, it allows you to do amazing things.

Solo travel top tip: always have a book with you, and don't be afraid to read it at dinner. 

Some of the amazing things being comfortable alone just let me experience include seeing a play at Shakespeare’s Globe, having afternoon tea in the same room Oscar Wilde used to frequent, sitting front row at a musical on London’s West End, and haggling my way through Camden Market. If I’d still been afraid to be alone, instead of writing in Hyde Park last Sunday, I may have been sitting on my couch, watching reruns of Buffy (which is also a fine activity, but you see my point.)

So whether illness drives you to spend time solo, or a breakup, or a move to a new city where you don’t know anyone –– my advice, no matter how scary it seems, it to lean in to the lonely. Get to know your damn self. Read a book, go for a walk, find a cafe you feel at home in. You’ll be a better, well-traveled, and happier person for it.

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.