I'm Ro. 

I’m a 30 year young woman with Crohn’s Disease. I have felt trapped by the burden of a chronic illness and the medical intervention it requires. This is my journey to taking back my life through dramatic change in lifestyle, location, and loving myself.



The last time I was in New Orleans I did not go to bed before 5am. I was there for an art exhibition by Dashboard, a curatorial organization I work with in Atlanta. We stayed 6 of us (sometimes as many as 10) in a beautiful AirBnB in the Bywater, equipped with a pagoda and wooden hot tub with no temperature control. We never quite figured out how to safely sit in the hot tub, the temperature shifting between freezing and boiling human soup pot. We chased chickens down the street when someone opened the chicken coop, moments before we left for the airport. To say it was fun would be an understatement. It was wild.

Those few days were some of the best of my life, however, and this is something about that weekend I have not admitted until now, I was in physical agony the whole time. I would wake up in the late morning with my stomach ravaged from the night before; leaving me keeled over on the ground clutching my waist. “Just your typical hangover!” I’d say. “We are certainly not as young as we used to be!” I’d laugh and take Advil, a drug I have since sworn off, even though I used to pop them like candy.   

My current trip would not be like that. This trip was about taking care of myself.

My friend Rachel who was kind enough to host me is an incredible chef. Though young and new to the game, she is hungry (pun intended) and talented. She runs a small catering company called Yalda Provisions. My first day in New Orleans she took me to the Crescent City Farmers Market so we could buy fresh produce to prepare and juice. The citrus in NOLA is fantastic. We walked through the park where old colonial mansions were littered with fruit trees. We bought grapefruit, ginger root, and purple kale and walked Audubon for hours, catching up, letting Rachel’s dog Marie run a few paces ahead.

Back at Rachel’s house we juiced grapefruit, ginger, beets, and carrots into a cream colored concoction. It had a strong grapefruit and earthy beet flavor on the front end, a pepper gingery flavor on the back. I made rice, dal, and the last of my shredded carrots in the rice cooker, topped with cashews and Tamari soy sauce. Rachel roasted the kale we picked up that afternoon with squash and sesame seeds. She made a quick miso dressing using miso paste, ginger, water, and oil. When I topped my simple rice dish with her expertly roasted veggies and miso dressing, my knees almost buckled. It was perfection.

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The next day and Rachel and I went on a bike ride that spanned almost the entire length of the city. We started in the Garden District passing collections of historic mansions, opulent structures of the prosperity of 1900s era New Orleans. We biked through the Lower Garden District and up into the Central Business District. At the WWII museum we watched tourists pose with a man dressed in WWII era fatigues, his expression pained as if he were pulled right out of combat.  We rolled into the French quarter, which in the middle of the day was not as seedy and vomit strewn as it is by nightfall. It had the energy of a nightclub yet to open, the bartenders slowly setting out their equipment, the anticipation of an evening about to begin. Is there no sadder sight than the music of Little John blaring “To the window! To the wall!” No one inside to hear it?

We hopped off our bikes at Jackson Square to walk through the artist market surrounding St. Louis Cathedral. We eyeballed stalls of folksy paintings of New Orleans, handmade “voodoo sticks,” and mardi gras beads, which I noticed hung from all over the city, wrapping trees in even the most residential wealthy neighborhoods. We watched a self proclaimed psychic eat a banana with one hand and wave it over a crystal ball with the other.

“Hey hey hey, looking good ladies, you all just made my day! Damn!” A chorus of jazz musicians followed us with their eyes. I am always interested to see how other women respond to male attention or harassment in the street. My inclination is to put my head high, shoulders back, stone face forward but half smile so as not to insight ire or anger.

Back on the road we rolled through Marigny, stopped at Dr. Bob’s art gallery, where I bought my first road trip talisman, a purple and yellow $10 “voodoo stick” complete with Dr. Bob’s signature bottle cap ends.

We shared perfectly pressed kale, apple, ginger juice and a radish salad at Satsuma Cafe, perused a packed bargain junk-store, and rolled into the Bywater. I love how narrow the roads in NOLA are. How the homes are all freshly painted in vibrant greens and purples. How the greenery grows up and around even the most manicured properties, everything wild and alive with foliage. Down Saint Claude Avenue we tried to check out Antenna gallery, but they were closed for installation, so we moved on to Park City a huge green space with an outdoor sculpture garden and the New Orleans Museum of Art. We passed high school marching band practice, filling the street with drum-line music putting on a show as we rolled by. At the museum, I sat in Will Ryman’s “America,” a breathtaking, life-size gold cabin covered in cast off electronics, pill bottles, gas caps, all painted a perfect plasticy gold.

That night we got home exhilarated and exhausted. Rachel cooked ground lamb with cumin and coriander. I made quinoa in my rice cooker. Melting into Rachel’s couch, the taste of gamey lamb on my tongue, I was perfectly content.

The next day I woke up early and went to a fancy spin studio around the corner from Rachel’s house. I made the mistake of buying a 3 class pass for $29 so like it or not, I had committed myself. After spin, I hopped on my mobile bike to go work in a coffee shop for a bit. I have a few health insurance issues, I did not manage to completely shut the door on before I left Atlanta.

One of these issues, is an outstanding bill for $3775.75 for a Remicade infusion back in February. I had been trying for months to get to the bottom of this unpaid bill. One of the worst things I found about having a chronic illness, a thing very few people actually talk about, is how terrible it is to deal with the confusing bureaucracy of the U.S. health insurance system. This bill for $3775.75 claimed to be a 3rd notice, a fact that a few years ago would have sent me into a panic, I now meet it with an exhausted eye roll.

In order to explain the seemingly inexplicable reason for this outstanding bill, I need to explain a little about Remicade infusion reimbursement. Stay with me, I'm sure that phrase must make you want to shut off your computer immediately and run. A single Remicade infusion with the nurse administering fee, comes to about $25,000 if you are paying out of pocket. Where they get this number I have no idea, but that is the number I was told I owed Blue Cross Blue Shield when they made a billing error on my account and said I was uninsured for a two day period, during which I received an infusion. It took almost a year to get that cleared up, but not until I had been bullied into starting to make payments. I had given them about $400, by the time they figured out their error, which they reimbursed me back about 6 months later.

Most insurance companies only pay up to a certain amount, leaving an outstanding balance that is prohibitively expensive unless you are some kind of Kardashian. My insurance covered up to $3775.75. That’s when a second insurer comes into play. I signed up for a program called Remistart. Remistart is a reimbursement program that issues a physical credit card to the patient to be used exclusively for that treatment. That means the patient must call up Remistart to get the appropriate balance loaded up on their card, then call their infusion center to pay the bill over the phone. It’s an archaic extra step that I can only think benefits the credit card companies through additional fees. My February bill needed to be paid by Remistart. Now here is where things get confusing. I had switched insurance companies in March, a month after this service bill. I was eligible for the Remistart program at this time, but it is a gray area as to who should be covering what. In order to get this bill paid, I needed to get to the bottom of whom to actually reach out too.

On that rainy New Orleans afternoon, I started by calling the Remistart credit card phone line in order to make sure the card was active. Next, I called the infusion center where the bill was issued. They claimed that my Remistart credit card had insufficient funds and they would not accept partial payment. Next I called Ambient Healthcare, a middle man whose position I’m not sure, but I believe they issue the actual infusion once it’s been ordered by the infusion center. I walked down Magazine Street, pushing my bike with one hand, yelling into the phone with the other. No one seemed to know where this bill had originated and who I needed to speak with in order to get it solved.

“How am I supposed to pay this when I can’t even figure out, who to talk too!” I wailed into the phone, tears now streaming down my cheeks in frustration; strangers on the sidewalk looked on sympathetically. I slammed down the phone, crouched onto my knees, and dug through my backpack to look at the document. I looked up and a middle aged white man stood looming in front of me.

“Excuse me mam, I did not mean to eavesdrop, but do you need help?” he said in a fatherly tone. “I am just out here waiting for my wife, but I could not help but over hear how upset you sounded.” He had what I assumed to be a New York Bronx accent, but later learned is a New Orleans accent, an usual Creole holdover.

“Oh, no I’m fine. Thank you.” I said, swallowing my embarrassment, I suddenly realized what a scene I must have been making. I felt like a child.

“Well, whoever you owe money to you just take it one day at a time. Just tell them you can only pay a little bit, even if it’s only $10 at a time. Are mom and dad around to help you?”

I smiled at him. Yes. They were. They always were.

“Thank you.” I said again. “I’m just frustrated and I deal with this a lot. I just lost my cool.” He smiled and touched my shoulder in a sweet yet patronizing way. I threw my backpack over my shoulder and locked up my bike outside Hey! Cafe.

That evening Rachel, her roommate Jenna, and I went to the Ogden Museum. I had a gin and soda and walked through gallery after gallery of southern painting. I find gin is mild on my stomach and I can sip a single drink for hours. We walked a few blocks to catch LUNA Fête, a multi-day celebration featuring illuminated installations, digital sculptures, video-mapping projections, and art animated by technology. The work was captivating. I watched as a production manager and artist frantically tried to relight an LED metallic tree and I felt a pang of homesickness.

The next day, I did a ‘thank you’ drawing for Rachel and Jenna, went to spin (I was determined not to waste that $29), packed up my car, and loaded on my bike. It was a relaxing few days in New Orleans, instead of being swept up into the rowdiness of the city, I feel like I watched from afar; a safe distance from my bike.


EATS: Yalda ProvisionsCrescent City Farmers MarketSatsuma CafeHey! Cafe

PLACES: DashboardNational WW2 Museum, Dr. Bob Art GalleryAntenna gallery, New Orleans Museum of ArtLUNA Fête

Austin, TX

Austin, TX

Leaving ATL

Leaving ATL