Wednesday, May 24, 2017

Raincoats

     I needed to choose a raincoat to wear to an outdoor event I attended last night. I have two different ones: a Tulane raincoat and a UNC raincoat. I pulled on leggings, rain boots, and a shirt without second thought. But when it came time to pick which raincoat to wear, I felt my heart being dragged in so many different directions. I took each of them on and off at least five times. I stared at myself in the mirror. Why was this decision so hard? And why couldn't I just pick a raincoat?

     I finally settled on the UNC raincoat, justifying my decision by admitting to myself that it was a better match for my light blue rain boots. But all night, I felt like an imposter. Like I was wearing something that was not really mine. Like a fake Carolina student. I saw other people wearing UNC gear and many of them smiled at me in a friendly Tar Heel manner, but I missed the immediate high-fives and toothy smiles that come when someone with connections to New Orleans realizes that I go to Tulane. I experienced a brief moment of panic when we were paired up with strangers at the event, fearing that my partner might ask me about college. Should I only mention Tulane? Should I only mention UNC? Should I mention both? Do people even care that I spent a fourth of my undergraduate education in New Orleans? I certainly care. Thankfully, the man paired up with me did not ask. I was spared a pinch of heartache.

      Upon noticing that I was transferring from Tulane, an academic adviser at UNC admitted, "I went down to visit once, and I almost didn't come back." Me either, I thought, wishing that I was still tiptoeing around stinging caterpillars in a magical land full of jazzy second lines and majestic oak trees.

      Don't get me wrong; North Carolina is lovely. One of my teaching assistants during the spring semester, who spent a lot of her educational experience at UNC, was thrilled that I was going to spend the next three years of undergrad at such a wonderful place. "There is something in the water there," she said, beaming with a love for Chapel Hill that must have been coursing through Carolina blue blood.

Photo of Audubon Park from www.experienceneworleans.com
     Don't over-romanticize New Orleans, I kept telling myself at the event, tugging on the sleeves of a jacket that felt like the wrong color. The truth is, there is no way to over-romanticize such an incredible city. It is as mysterious and fun and beautiful as everyone says. The reality of it exceeds expectations of it, and the expectations of it are already very high. One of my friends recently commented, "You come to New Orleans expecting that it won't actually be like 'The Princess and the Frog.' But then you get here and it is exactly like that."

      What I do fear that I may be romanticizing is my own experience over the past year in New Orleans. If all of my positive memories, the ones that are constantly replaying in my head as I agonize over leaving a place I love, represented my reality, then I would have never left. But I spent more time in the Student Health Center than I did in all of the gorgeous crevices of the city, and my desire to sit and read under those giant oak trees was completely obliterated by the inability of my lungs to handle their pollen. I was so sick that I was only able to attend one Mardi Gras parade, and some of my professors expressed surprise that I could even finish the spring semester. Despite all of the good things, it has been a year marked by sickness and pain, and I have to remind myself of that in order to feel even the slightest bit okay about my decision to leave.

One of my favorite places to walk
through at Loyola University
     Since coming home, I have dealt with varying degrees of almost constant nausea, which has been enormously frustrating. The first weekend that I was home, I became very sick and had to cancel all of my plans with friends. While I was able to reschedule with almost everyone, I was disappointed that my body was forcing me to spend such a difficult weekend in isolation. Things improved throughout the week, but I am still overwhelmed by the unpredictability of my illnesses. On Saturday night I was only able to eat a single orange slice before throwing up. I spend a good part of each day feeling defeated. Fatigue has been a very real challenge for me over the past several months, and I am disappointed that it is still an issue now that I am home, although I know I need to give myself adequate time to rest, recover, and improve. I did have an encouraging appointment with a surgeon who applauded my decision to transfer and told me that a potential upcoming procedure could be greatly delayed or even completely cancelled thanks to that decision. It was an affirming medical appointment, and considering that these rarely exist and that I am struggling so much with switching schools it was well-timed and desperately needed.

     You know how after you don't see someone for a long time it becomes more difficult to picture their face in your mind? I am afraid of having that happen to me with New Orleans, Tulane University, and my college friends. I am afraid of beginning to forget such an important year of my life. I am afraid of watching the details fade into the background of my mind. I may have worn the UNC raincoat tonight, but I will not be throwing out the Tulane raincoat or shoving it in the back of my closet to wither away. At the end of the day, the rain will come no matter what color I choose to wear. Both are valid. Both are good. Both are worthy. I am learning how to love both.

Sunday, May 7, 2017

A Streetcar Saint

     Since I will not be returning to Tulane in the fall, I am trying to explore New Orleans as much as possible, do all of my favorite things, and cram in time with friends before I leave. On Friday night, my lovely roommate Allison organized a little going away dinner for me with several of my Tulane friends, and it was such a treat to have so many people that I love all at the same table. I am lucky to have such a fantastic roommate, and I am grateful to have so many generous friends.

      Only a few days after I decided to enroll at Carolina, I went home briefly for Easter break. I was glad to go home and visit with family and friends, but overall it was an incredibly difficult period of time. I was struggling with my UNC registration and struggling to see myself there. I kept walking around campus, trying to feel at home, when all I really wanted to do was run back to the Tulane bead tree and watch the colorful blur of shotgun houses out the window of a university shuttle. I was doing my very best to get excited about all the opportunities Carolina has in store for me and I did not want anyone around me to have to deal with anything but optimism, so I raved about the positive aspects of UNC and was careful to follow up every one of my own complaints about transferring with "but I'm sure it will be fine once I get here."

      My parents were as sweet as could be. They picked me up from the airport around midnight when my plane reached North Carolina, and before I even went upstairs to go to bed I broke down and sobbed about the whole thing. When I finally went upstairs to my room, I saw a perfectly made bed with a brand new Carolina pillow neatly situated across it, along with a paper UNC pharmacy bag filled with prescriptions, and it just felt so appropriate given my situation. We went out to a celebratory dinner the next night, because I am still determined to make this sad occasion into a joyous one, and they very generously gave me another little gift bag filled with UNC items. That night, I found myself actually excited to start something new, but I would be lying if I didn't acknowledge that the feeling was fleeting.

       I think one of the reasons that Easter break was so hard on me was that it finally occurred to me that even though I have friends at Carolina, I have missed an entire year of memories and laughter and learning with them. I barely understand how to access my university portal, so to say that I am behind would be quite the understatement. Lingo and inside jokes were casually tossed around and I missed the comfort of my own university, where I am "in the know" about these things (for the most part, at least). I feel like I could spend an entire year trying to catch up and still not get there. It seems like everyone has grown closer together while I have put down roots elsewhere, but now I am being freshly uprooted and I do not really belong anywhere anymore. How do you recover a lost year? And what do you do when you really want to be 850 miles away?

      I know the next few days will be full of heartache and, quite honestly, full of regret. Friends I should have spent more time with. Places I should have visited more often. People I should have loved more fully and more gently. A city I should have explored more thoroughly. I am hoping to become consistently excited about Carolina over the summer. Hopefully I can create some positive memories on campus and make some friends before the school year starts. Hopefully it will feel like home by August.

      Today I had the opportunity to go to my New Orleans church one final Sunday, and, as always, it was such a wonderful place to be. I am going to miss the rector, the sweet couple that takes me there, and the congregation, but I feel lucky to have met such amazing people and to be loved in two churches in two different cities. I learned so much in my New Orleans church and participated in so many joyous songs and prayers. What more could a girl ask for than to be widely loved and to be able to love widely?

     Yesterday, I decided to spend some time traipsing around the French Quarter, stopping to listen to every street performer and making an effort to be as gracious as possible to everyone around me. I want to leave this city with as much love as it has given me, and though I know it is impossible, I figure that I might as well try. Over the past week I told myself that I was handling the whole transferring thing well, given the circumstances. But as I walked into the St. Louis Cathedral just to see it one last time, I found a tear or two welling up in my eyes. I sat in a wooden pew, ignored all of the tourists around me, and found myself wondering why in the world my own body is forcing me to leave a place I have fallen so madly in love with. I did not receive any clarity or answers, but I am glad that there was a quiet place to sit with my sorrow for a minute before I reentered the lively streets of New Orleans.

      After shopping around a bit, watching a movie about Hurricane Katrina, and buying a NOLA snowball (which I ended up mostly throwing away because I just always feel like the flavor to ice ratio is way too heavy on the flavor), I boarded the streetcar again to head to an arts market a few miles away. The streetcar is always packed coming back from the French Quarter, especially on the weekends and when the weather is nice, and because I am a tiny human it is essentially guaranteed that someone will join me on whichever little bench I choose.

      A woman only a four or five years my senior sat down next to me right as the streetcar began to move. My eyes were locked on Canal Street as I vowed to remember the scene and smell and magic feeling in the air that makes New Orleans the mysterious city that it is. I did not intend on conversing with this woman, but we were wearing the same ring, so she struck up a conversation with me. Assuming that I was a tourist because of some New Orleans apparel I had purchased that day and was carrying with me, she asked me where I was from. I explained that I was a Tulane student from North Carolina, but that I was returning home soon. "Why?" she asked, frowning. She was a brave soul to venture into this territory.

     "I was really sick this year, and I need to be closer to home. But I wanted to get some things to remember New Orleans by and spend one last day in the French Quarter. I really love it here." Despite the absence of details, I was surprised at how forthcoming I was about the whole thing. I am usually pretty good at providing extremely vague answers whenever a stranger asks me anything that might relate to my health, so this was at least an improvement, even if it was still a bit ambiguous. She seemed to understand and went on to tell me all about her travels, as a student from Spain who studied abroad in Canada and has seen many corners of the earth. I was impressed by how outgoing she was and I quickly became engrossed in both her stories of underground malls in Toronto and fascination with daiquiris.

Photo from www.neworleanscondos.net

     A few blocks before her stop, she looked me straight in the eye and said, "I hope your health improves. Remember, there are always more degrees. There is only one of you." With that, we said goodbye, and unfortunately I do not expect to ever be able to see her again. It was a strangely encouraging encounter. There was something so powerful about being able to share such a delicate situation with someone who did not even know my name.
 
     Perhaps it is naïve of me, but I think I will always remember the saint I encountered on the streetcar yesterday. Plenty of people have said plenty of nice things to me regarding my decision to transfer, but she just seemed so at ease with the whole thing. There was no awkward scramble for words or fear of sounding condescending. It was one of the most authentically human moments I have experienced in a long time. I did not find clarity or peace in the cathedral yesterday. But maybe God can use streetcars as churches. After all, even saints use public transportation.

Monday, April 10, 2017

Coming Home to Carolina

     Deep breath. Here we go.

     In mid-February, after a fairly lengthy text message in which I summarized many of the health issues I was experiencing at the time, my dear friend Amelia replied, "I know you were really looking forward to this year and this is making it a whole lot less enjoyable." I instantly connected with that statement, one that I had been previously unable (or perhaps unwilling) to admit to myself. I considered all that I had pictured college to be, and then looked at the reality of what college has been for me given all of my health challenges, and I knew Amelia was right. I have spent so much time trying to convince myself that I can be happy despite my health, when in reality it is very difficult to enjoy things when I am sick most of the time.

     When I called my mom, who works within a university, the next day, she said, "I always tell students that we want them to thrive at college. Rachel, you're doing a really good job, and I am so proud of you, but I just don't think you've been able to thrive." I think this was a hard case to make without seeming accusatory, and I was impressed by my mom's graceful use of words. I have had a great time this year, and I have participated in so many incredible things, but I have not been able to fully live the way I want to. The combination of poor health and being so far from home (and therefore unable to remain with a consistent set of trusted medical providers) has inhibited me from having the college experience I have always hoped for.  

     Beginning in the fall, I will be attending the University of North Carolina at Chapel Hill. I want to be very clear by saying that I have no ill feelings towards Tulane University whatsoever, and I made the right choice coming here for college. I adore Tulane, and transferring to UNC is not my way of correcting a mistake. I have not regretted joining the Green Wave for a single second. My year in New Orleans will always be an important part of the person I am. From oak trees to streetcars to second lines, this city and campus will continue to hold a special place in my heart. But the reality is that I need to be closer to my family and to my NC health care providers in order to maintain an acceptable quality of life. Making the decision to give up everything I have in New Orleans, most notably my dozens of compassionate friends and professors, was agonizing.


     Over the past few weeks, I told many of you that I was not considering transfer and/or that I was definitely staying at Tulane. I apologize for being dishonest. I was keeping this information private because I was not seeking outside opinions and needed to make this decision without a million voices pulling me in different directions. Part of me just wanted to keep it a secret for as long as possible because I was not completely ready to face it myself. This blog post is the first that anyone outside of my immediate family (and a few university faculty members) are hearing of my decision to transfer to UNC. Please know that my secrecy was not intended as an insult.

     When my first rheumatologist spoke the harsh words "juvenile rheumatoid arthritis" into the still air of a tiny hospital exam room, I never imagined that this diagnosis would end up pushing me away from a place I love. The past year has dealt me blow after blow by exposing many of the things that my body simply cannot do, no matter how hard I try, how passionate I am, or how much effort I put in. While I am very optimistic about UNC, this is obviously not an ideal situation.

      Over the past two months, whenever I felt completely broken and unsure what to do, I reminded myself that there were no bad options. UNC and Tulane are both world-renowned universities with excellent academic programs and vibrant social atmospheres. Both are stocked with thousands of brilliant professors and fascinating students. I am so lucky that returning home for me means attending one of the best universities in the country. However, as I am sure you can imagine, knowing this does not make being ripped apart from all of my friends in New Orleans hurt any less. It took many hours of consideration and conversation and tears to reach this decision, and I am asking everyone to please be respectful of the change I am making, keeping in mind that my emotions regarding this decision are very mixed.

      In the span of only a few weeks I went from planning out study abroad courses for my sophomore year in Amsterdam to blinking back tears in my academic adviser's office as we combed over a transfer application that was actively breaking my heart. I am excited to see what the next three years at Carolina will hold, and the opportunity to be a Tar Heel is not something I take for granted by any means, but leaving Tulane is very painful and upsetting. I am walking away from a full scholarship, an entire undergraduate public health program/degree, and my current minor (Homeland Security), among many other things. Your love, support, and understanding are greatly appreciated.

      This blog post represents a condensed version of an incredibly complex two month application process and eight month struggle for health. I realize that it leaves questions unanswered, and rather than speculating on any information that is unclear or absent from this post, I urge you to directly ask me any questions you may have. Text me, call me, comment, shoot me an email, or come knock on my door. I will answer questions candidly. I am going home to North Carolina this Wednesday night for Easter break, but, as my academic advisers heard me say over and over again, I will be finishing the spring semester at Tulane, and I plan on finishing strong.

     This year has been full of doctors, illness, and tears. It has shattered my heart and led me to friends who have gently pieced it back together. I am doing my best to turn this sad thing into a happy thing. Despite my heartache, I am choosing to celebrate all of the laughter, adventure, and (fingers crossed) health that awaits me at Carolina. I hope you will join me. 

Monday, April 3, 2017

10 Days of Freedom

         I flew back to New Orleans last night and will be flying home again next week for Easter break. This means that I am only actually in school for 10 days before I go back home again. Unfortunately, most of my spring break, plus the extra medical week I took beforehand, was packed with doctor's appointments and tests (a blood draw, finger prick, lots of spirometry, two x-rays, a CT scan, and an MRI). I saw three specialists along with my primary care doctor, and in between all of these appointments I was forced to make repeated trips to radiology clinics as my medical team attempted to gather as much information as possible. I need a break.

        Accordingly, my family and I created a goal for these next 10 days that I am in New Orleans: no trips to the Student Health Center (excluding my allergy shots, which I must receive later this week).

A sweet (and beautiful!) welcome home sign that my roommate, Allison, made for me!

         Given the frequency and severity with which I am sick, I genuinely feel that the Student Health Center should be awarding me class credit for the many hours I have spent in there being examined, diagnosed, treated, and monitored. It takes up more of my time that any of my extracurriculars.

Using my new nebulizer while I do homework

        Ten days may not seem like a lot of time, but, if successful, it will be my longest stretch without doctors in months. Luckily, this mission has been made possible by my new nebulizer. Many of the treatments I was having to rush into Student Health for before are now available in my very own dorm room. I am not feeling too good arthritis-wise (my left hip was killing me after my flights yesterday, and today I have some swelling in my right wrist) and because I am on antibiotics right now I am having a considerable amount of nausea, but there is not much that they can do about those things anyway. My rheumatologist, parents and I have decided not to allow me to have any more steroids for the time being, which is a complex decision, but I am hoping that some of my other medications will rise to the occasion and manage all of the inflammation in my body.

       I cancelled my Thursday appointment with my New Orleans rheumatologist, because anyone who writes off my symptoms (see: Three Lessons from a Sick 17-Year-Old) is just not worth my time, and my North Carolina rheumatologist is on top of some of my more immediate arthritis issues at the moment. Sometimes you just have to put your foot down and realize that you deserve better.

       Wish me luck! The 10 day countdown has begun.

Saturday, March 18, 2017

Flying Home Early

     As some of you know from my most recent Facebook post, I made the decision to come home a week early for spring break due to my health, meaning that I am missing a full week of classes. This past week was a very long one, and I thought I would provide some more detail here.

      I have struggled with seasonal allergies for my entire life. At the beginning of my senior year of high school, I began receiving weekly allergy shots in each arm in hopes of reducing my symptoms and reactions. North Carolina pollen can get pretty intense, and so I always kept Zyrtec, Claritin, and my albuterol inhaler nearby as springtime rolled around.

     This spring was my first in Louisiana, and things were much worse than I expected. My eyes were constantly itchy, I used one hundred puffs of albuterol in one week, I would sneeze six or seven times in a row, and my body felt "off." I was waking up many times during the night due to an inability to breathe, and I had to start to sleep sitting up. I also started having random, low-grade fevers at night. On Monday I finally went to the doctor, where I was given a breathing treatment and instructed to use Flonase and Benadryl regularly on top of the Zyrtec, Flovent, eye drops, and albuterol that were already a part of my treatment.

      Unfortunately, I also developed laryngitis on Tuesday, and since then I have only been able to whisper or speak in a very weak and broken manner that is difficult to understand. The pain in my throat was intense, and initially I suspected strep throat, which I was not pleased about. "I am going to punch a surgeon if I have strep," I told my roommates, reflecting upon the tonsillectomy I had in December to end the pattern of strep infections that plagued my fall semester.

      I went into the doctor on Wednesday morning for the laryngitis and a strep rapid test and culture, and was given a sheet full of pain-relieving strategies, which I was very appreciative of. However, I really cannot accurately describe in words how severe the laryngitis pain was. It was ten times worse than any of the strep infections I have had in the past and uncomfortable enough to remind me of my tonsillectomy recovery (not a pleasant experience by any means). Further, the combination of my intense allergies with the laryngitis and joint pain rendered me absolutely miserable. Normally this would have sent me into a spiral of tears, but my throat hurt too badly to cry, and so I texted my dad to discuss the possibility of coming home for spring break early.

Throwback to last summer when I was hanging out with my
family plus Mickey in Hawaii with highly functioning lungs
and a lei around my neck.
     We worked on the details of flying home early for a bit, which involved an email to my academic advisor and a trip over to our campus' disability services office. I walked in with a trembling body (wayyyyyy too much albuterol) and with a horribly rusty, quiet voice explained my situation. Consideration for tardies and absences is part of my accommodations, so I needed to figure out if going home a week early for medical reasons was even a possibility. As I was explaining myself to two women in the office, I broke down into tears, upset by my poor health and disappointed in myself for needing to miss classes. Luckily, some previously unknown saint whisked me into her office, provided an adequate supply of tissues, and listened patiently as I slowly whispered what was going on to her, pausing after every few words to suck in a wheezy breath. She helped me to develop a plan of action and put me in touch with some other people, most importantly a case manager, who could assist with the process. When I left the disability services building, I was planning on walking back to my dorm and studying for a test I had a few hours later. On the walk back, however, I gradually began to feel like I couldn't breathe at all, despite the four puffs of albuterol I had recently inhaled. I changed my path and returned to the student health center, where I had been diagnosed with laryngitis just a few hours earlier.

      By the time I was through the doors of the clinic, I was gasping for breath. Luckily, my favorite nurse was in the front lobby area, and she immediately approached me and could tell that I was unable to breathe. She brought me back to a treatment room right away, without even making me check in due to my urgent condition. My pulse oxygen level was not within an ideal range, and I was seriously panicking. I definitely have a history of panicking during asthma attacks like this one, but I feel no shame regarding this tendency of mine, because not being able to breathe is a legitimate thing to be scared of. Additionally, the amount of albuterol I have been forced to take over the past few weeks comes with symptoms of shakiness and anxiety, so freaking out was really no surprise to anyone. This time, however, the tightening felt like it was in my throat and not in my lungs, and I could barely communicate that due to my inability to speak (thank you laryngitis). A few other nurses started my treatment process.

     After taking two more puffs of albuterol and experiencing no relief or increase in my pulse oxygen levels, I was given an allergy cocktail of Benadryl, Zyrtec, and some other drug that I had never heard of before. Luckily, after some nurse-guided assistance in the "you seriously need to chill out" process and the kicking in of the allergy cocktail, I was able to breathe much better and my pulse oxygen level went back up, although my lungs felt extremely weak, my throat was still sore, and my breathing was labored. My favorite nurse, who was not even assigned to my case at that point, came by just to give me a hug and declared that I was her favorite patient. "How's my little one? I had to come check on her, she's my favorite," she told my nurse. I was given some disgusting sugary orange drink that I swallowed approximately two sips of before giving up and a packet of crackers in an effort to raise my blood sugar, and I was instructed to remain in the room for monitoring for a little while.

    Naturally, I picked up my printed notes and began studying for my health care test, which at this point was in only about two hours. "Uh, no," one of the nurses said with raised eyebrows, "We just gave you Benadryl. It's going to knock you out, you're not going to be able to take your exam today." First of all, I was definitely going to take this exam, because there was absolutely no way that they were going to physically restrain me and I was well prepared and ready for the test. Second of all, Benadryl never makes me sleepy (superpower?) and although I pleaded this case to the nurse, she was highly skeptical.

Shout out to whoever created inhalers,
I appreciate you even if they do come
with some rough side effects.
    About a half hour later, all of the nurses were genuinely confused on how I was still awake while laying down in the treatment room with dimmed lighting and quite a lot of Benadryl in my body, but when my doctor finally gave me the option to leave a little while later, I popped out of the bed and headed straight for my test.

    Naturally, I questioned several times whether or not coming home was the right thing to do, despite knowing in my gut that is was. My dad rebooked my flight for Friday night and my grandfather kindly agreed to take care of me during this upcoming week while my parents will be at work and my sister will be at school. I am too afraid to be left alone for long periods of time at the moment, because my lungs are in a fragile state and I likely will not be able to drive myself to the pediatrician if I need a breathing treatment.

     I forced myself to make it to class on Thursday and Friday (although I could not really participate, because my speaking abilities were quite limited). At the start of my first class on Friday morning, my professor walked into the room, pointed at me, and asked, "You surviving?" which I think is a fairly good indicator that my decision to fly home that night was a good one. Luckily, all of my professors were more than supportive of this decision and made it clear that they agreed with my choice. Sometimes it is surprising to me how poorly my health is perceived by those around me when I think that I am doing a decent job of keeping my issues under wraps.

    Luckily, the strep rapid test and culture both came back negative, but unfortunately I still do not have my voice back, my lungs feel small, exhausted, and constricted, and the arthritis in my hips and jaw is not cutting my any slack. Thankfully my family is taking good care of me and my time outside (and therefore expose to pollen) has been eliminated over the next few days.

    The flight home last night felt miserably long because I could not stop coughing and could barely communicate my need for orange juice to the flight attendant, but I knew my dad would be waiting for me at the airport when I got in and I was excited to go home and recover. Before my final flight, he texted me that he had "just finished making [my] bed with newly washed sheets," which is about the most exciting text a sick person on a plane can receive, and I was especially grateful because I knew that it would help to reduce my allergies through the night. My parents are always so generous and supportive of my medical decisions. "Just wanted to say I love you, I am very proud of you, and I am glad you're coming home this weekend. I think it is the right thing to do," my mother texted me after I declined her phone call on Wednesday night due to my inability to talk.

    When I finally crawled into my North Carolina bed, I told myself that my room would have to stay a pet-free zone. My family has two dogs and two cats, and while I love this little zoo of ours dearly, they are not particularly beneficial to my lungs. Right as I was beginning to fall asleep, I heard my tiniest pet, a small cat named Brooke, scratch at the closed door of my bedroom, begging to be let in. I initially resisted, but then she stuck her teensy black paw through the crack under the door, and my heart completely melted. I have no resistance whatsoever. Which would I regret more, not letting her in and breaking her heart or letting her in and having allergy symptoms? I thought. And so I took two Benadryl and opened the door, just as my friends and family have done for me over the last year as I have dealt with infection after infection and medical challenge after medical challenge. I like to think that we all deserve love, even if it hurts sometimes.

Tuesday, March 7, 2017

The Bare Necessities

     I adored "The Jungle Book" growing up. Watching Mowgli and Baloo dance around and sing "The Bare Necessities" could keep me entertained for hours. Whenever I see anything about "The Jungle Book" I think back to how much I loved that little film, and I still remember the words to all of the songs.

My mother (Amy) & I
     I have said it before, and I will say it again: I will always hate being sick. I will never be grateful for it or think that God ordained this suffering. I will never say that this is the path my life was predestined to take. I don't believe that I should have arthritis. If someone offered me a miracle cure, and if I could erase all of the past years of illness, I would take it without hesitation. This is a painful disease, and it has taken a serious toll on my quality of life. 

     On the other hand, I am grateful for the way arthritis forces me to prioritize the things that are the most important to me. Papers and tests and assignments do not seem nearly as stressful when you are just hoping that your body will let you make it through the day. 

      The reality is that I have been very sick this year, in brutal on-and-off phases over the past several months. I have battled my body in ways that I was unprepared for, and I have found myself meticulously weighing decisions that I never anticipated making. 

     My mom was able to spend a long weekend with me here in New Orleans, and it was so refreshing. We made sure to take lots of time out to rest and even spent a night doing face masks and watching Grey's Anatomy as I allowed my joints to recover from the adventures of the day. We spent a lot of time talking through and figuring out what we need to do to ensure that my college experience is happy and healthy, not spent cooped up in my dorm room with a failing body while making frequent excursions to Walgreens to pick up prescriptions and ibuprofen. We ventured to all of my favorite New Orleans places, from the French Market to my beautiful little Episcopal church to Tulane's campus. I loved showing her around in the city that has quickly claimed such a large space in my heart. My mom helped me think about what is most important to me and how to make medical decisions that take my quality of life into consideration. She is wonderful at balancing rational thinking with going with your gut, and I trust her advice wholeheartedly. While many other people have been trying to convince me that things will get better, my mom admitted, "You're going to get sick again," and helped me to plan accordingly, and I felt like someone finally understood how fragile this damaged immune system of mine really is. I am so lucky to have a mom who looks like a sister and feels like a best friend. She is a beautiful person, inside and out. 

Allie & I
    My friend Allie surprised me on Friday night by driving all the way down from North Carolina to visit! My mom and I were sitting on a bench in the mall, resting my joints in between stores, when out of nowhere I saw Allie coming toward me with her unmistakably gorgeous smile and open arms. Obviously I burst into tears because 1) I always cry and 2) I love this girl. Allie was a babysitter for my family who drove my sister and I home from school every day for several years, but she very quickly became the big sister I always dreamed of having and one of my biggest role models. Her open-mindedness and sense of adventure have inspired me to take risks and be myself. Watching her live such a wonderful and unconventional life has encouraged me to live fully and authentically. Seeing her in that Metairie shopping mall was a huge surprise and a dream come true, especially in the midst of what has been a challenging month or so, and I am so thankful for the time we had together this weekend. My mom and Allie and New Orleans, all at once? I could not have been any happier.

    When I am feeling utterly awful, whether it is 2 a.m. and I am battling severe nausea or it is 9 a.m. and I am sitting on the landing of the stairs up to my classroom because I am so exhausted that I need a break before making it all the way up, I think about the things that matter the most to me. I'd like to go to divinity school one day. I adore my family and I have the sweetest friends. My roommate and suitemates couldn't be better people. All I want is to love as deeply as possible in whatever time I have on this planet.

     And then, of course, are all the tinier things. Maybe these things do not constitute necessities, but they sure do make my quality of life a whole lot better (can you tell that I have been thinking a lot about quality of life lately?) and so I am grateful for them. I love resting my head on my mom's shoulder, and I love when my roommate Allison calls me "Rach," and I love perfecting my eyeliner. I love vegan pancakes, and I love secondhand bookstores, and I love walking through tunnels of Louisiana oak trees. I love riding the St. Charles streetcar, and I love long-sleeved pajamas, and I love surprises.

     When we think about basic things people need to survive, we often mention health. Sure, we need some degree of health for our hearts to keep on beating and our lungs to continue the life-giving pattern of sucking in and releasing air. I am no stranger to the workings of the human body. But when I am ill, health does not feel like one of these bare necessities. Loving people, going to church, crying, and laughing - these all seem like necessities to me. Everything else is just a bonus that I typically take for granted.

    I think if all I get to do in life is love people and share in their joys and sorrows I will be content. Maybe that's not true. I certainly don't feel that way when I am playing the Zofran waiting game or receiving not-so-great news from doctors. I have to have at least some degree of health to love people in the way that I want to. It takes energy to pick up the phone or write out a card or give a hug. Maybe part of coping with this disease is learning how to love even through suffering. I like to think that I am improving at that, but I still have a ways to go.

     There are many things that must be put on hold when I am sick, from attending classes to going on long bike rides, but there are also many things that can survive the turbulent waters of illness. Yesterday evening I called a friend from home who left me a sweet voicemail last week. After returning from my afternoon class, I was feeling nauseous and intense pain had crept into my right knee. I was too exhausted to be frustrated and too miserable to be angry. Yet talking to someone who leads such an extraordinary and meaningful life distracted me enough from my shaking hands and racing heart (too much Albuterol, but what can I say, I have to breathe) to make me feel like maybe people think of me as more than the product of my disease. Yesterday, this phone call was more nourishing and sustaining than any of the pills I took.

"The bare necessities of life will come to you. They'll come to you." 

Wednesday, March 1, 2017

The Last Pain-Free Day

An adorable dorm picnic Isabel and I had last
semester on a rainy day, featuring stolen
dining hall food.
     My dear friend Isabel and I were doing some homework in one of our dorm's common rooms on Monday afternoon for a few hours, and every once in awhile we found ourselves wrapped up in conversation. She is an amazingly easy person to talk to, wise beyond her years, and one of the most genuine people I know. Isabel is endlessly kind and, although I am not quite sure how she does it, she always gives me space to feel whatever it is that I am feeling without any judgment. At one point we found ourselves briefly discussing the process of learning that one has a chronic illness. "I don't remember it that well, since I was only eleven," I confessed to her, "but I still think it's so strange that one day you wake up and feel pain, and then it stays with you for the rest of your life. You never expect that some random day will be your last day without pain."

      I don't remember my own so-called "last day." I have no recollection of the day before my elbow started to hurt. I certainly did not expect that a painful elbow would lead to chronic pain, years of fatigue, long-term immunosuppressant use, battles over a wheelchair, countless hours of physical therapy, my mom injecting poison into my body ever Friday night as I sat on the edge of her bathtub, etc. I have no idea how this all happened so fast.

     Now that I have been living with this disease for seven years, I feel like I am supposed to be an expert. I am supposed to know how to manage my pain, how to concoct the perfect medication regimen, and how to make long-term decisions regarding my illness. Sometimes it feels like I have been living with arthritis my whole life. Sometimes it feels like it has only been a month or two.

      Yesterday we received results back from a brain MRI I had on Sunday morning. I am glad to report that the images were normal, and my ENT expects the cranial nerve issue I am dealing with at the moment, an unusual complication from my tonsillectomy in December, to resolve itself in about six months! Receiving a diagnosis for an issue expected to be temporary is not something I take for granted. Problems that go away are little miracles when most of your pain is chronic.

Colorful artwork in the MRI waiting room
     The truth is, I am scared of the path ahead in terms of my chronic illnesses. I am afraid of the future and I am yearning for the perfect world that I am confident exists outside of this one. The number of tears I have cried over the past week is horribly embarrassing. I have literally had to clean my phone every day just because of the film of tears that has built up on it. It seems that I have reached a breaking point. I know I am not all alone in the world of autoimmune disease, but for some reason knowing that is still not cutting it for me at the moment.

    I hope my last pain-free day was wonderful. I wish I could say that I took a moment to stop and appreciate my health during those final hours of total wellbeing, but I am almost one hundred percent confident that I did not. I suppose not many eleven-year-olds actively appreciate their youthful bones, but I still feel a little sad when I think about how ungrateful I was in a world where so many people are sick and hurting.

    Yesterday my hands were swollen and stiff, and I could feel the fluid in my achy knees. I paced back and forth in the hallway of my dorm talking to my mom on the phone, and the pain in my knees as I paced caused me great anxiety, which only made me pace more, which hurt my knees more... you get the picture. At one point I looked down at my hands in despair. The pointer finger on my left hand was particularly inflamed and red, and it looked so out of place on my normally thin, bony hands. I began to sob all over again, after only a couple of minutes of holding it together. I felt strangely disconnected yet simultaneously trapped within my own body. I felt so powerless.

     I was hoping last night would be better, but unfortunately my stomach was unwilling to allow me a full night of sleep. I woke up around two o'clock in the morning feeling very ill. I took a Zofran and laid back down in my bed. Only thirty minutes until the Zofran kicks in and I stop feeling nauseous, I repeated to myself as I tried to concentrate on the humming of my fan. The time was 2:15. I just had to make it until 2:45. I have played this miserable waiting game many times before, and I was determined to play it again.

     At 2:22, only seven minutes into my thirty minute mission, I realized that I absolutely could not wait out the medication. I threw up the tiny bit of dinner I had been able to eat that night and fell back asleep. My muscles were weak and my lower joints were unstable, and although the goal was to wake up feeling refreshed and back on track, the morning did not cut me any slack. So much for a strict sleeping schedule.

     At seventeen years old, I am supposed to be at the peak of my health. While walking to our campus' Jewish center this morning, I had my music on shuffle and my earbuds in as I soaked in the warm New Orleans sunlight. The ABBA song "Dancing Queen" came on, and while I think I was supposed to feel free and happy, I just felt disappointed in my body. Call it a pity party, call it a smack across the face from reality, call it whatever you please. Some days it is difficult to push aside the desire to be like everyone else. I am seventeen - why am I limping around instead of dancing?

    I wish I spent my last pain-free day being the dancing queen. Unfortunately I have not yet seen a pain-free day at seventeen and likely will not in the three months until my eighteenth birthday, so this is a dream that will have to die. And so I wonder - which of my dreams will wither as my autoimmune disease progresses and looms over me, and which will survive?

Monday, February 27, 2017

English Sheep

      Last June, I was given the extraordinary opportunity to go on a literature-based trip through England with some of my peers and one of my favorite high school teachers. You may recall my post, "Problem Child," in which I wrote about my English adventures and included some photos from the trip.

      The past few weeks (or perhaps months, if we're being honest) have been hard on my body and hard on my mind. This weekend has been one of the longest and scariest that I have experienced since middle school, and unfortunately due to Mardi Gras break it won't even be over until Wednesday. I have called my parents in tears way too many times and the prospect of more medical tests and more specialists makes it feel like someone is pushing my head back underwater every time I try to come up for a gasp of fresh air.

      As I have spent countless hours curled up under my comforter hoping and wishing and praying that the pain would go away, I have found my thoughts drifting back to a single anchor: sheep.

All of the white dots are sheep

     On the literature trip, we were able to spend a good portion of our time in the countryside, traversing through green, picturesque hills and following the comforting babble of quiet streams, trying not to fall as we steadied our boots on slippery black pebbles. On one of our first nights in England, I went with some friends to wander around the countryside in the early evening after we finished dinner. It was chilly outside and I remember having swollen knees and fingers and being tempted to head straight for bed, but I am so glad that I decided to tag along. As we followed the gravel road away from the hotel, we found ourselves captivated by the dozens of sheep that grazed peacefully through the bright green grasses. I was as fascinated by them as everyone else, since stumbling across flocks of sheep never really happens to me in my hometown, but I definitely did not think as much of it then as I do now.

     Everything sort of feels like chaos. My body is a wreck and as a result my mind is a wreck. Mardi Gras has obliterated my normal routines and everyone is loud and all over the place. There are dozens of Walgreens prescription pill bottles scattered on my desk and in my drawers, and I am currently on two medications that I have not yet found the energy to learn how to pronounce. Every time I check the "health issues" section of my hospital's personalized patient portal I find something new. My physicians have entered into the system issues that I did not even realize I have. But in the midst of what has been a chaotic and overwhelming year, my mind settles when I focus on sheep. They are quiet and tranquil animals. They never cause a scene. They are easily frightened but never frightening. They are content with grass, sunlight, hills, and each other.

     I have always loved cities, but whenever I am sick I long for the comforts of a small town. I have never lived in a small town or rural area, so perhaps I am over-romanticizing them, but I like the idea of everyone knowing each other's names and of gazing up at the stars at night. I like the idea of befriending sheep and of looking out of a kitchen window only to find rolling hills that seem to stretch for eternity.

A flock of paper sheep given to me for free in England. Their names are Magenta,
Cilantro, Tangerine, Cerulean, Violet, and Christian. Shout out to my roommate
Allison for assisting in the naming process and accepting them as a part of our room.

    I went to England expecting to love London, with its twinkling city lights and busy energy, but what I ended up loving the most were all of the sheep in the countryside. There is something so enticing about a content and simple life. It seems that sheep have far surpassed me in the whole "figuring out life" process, so perhaps learning from them is not such a peculiar thing. I dug through my disaster of a desk drawer this morning and pulled out the small blue journal I took with me on the trip. Under Day One, I wrote "Sheep!" and under Day Two I wrote, "All the sheeeep." I think I was supposed to get something more academic out of the trip, whether it be insights about Shakespeare or a new perspective on the Brontë sisters, but while I certainly learned quite a lot about English literature, the most impactful lesson that I learned came straight from English sheep.

    Is it weird to miss sheep? Probably. Could I have had this same experience in a rural area of the United States without journeying to an entirely different continent? Perhaps. Regardless, I wish I could spend an hour or two in the English countryside today. I wish I could hang out with some sheep and wander through tall grasses. I wish I could dip my fingertips into the cold, flowing water of small streams and feel a shiver run up my arm, just electrifying enough to remind me of how fully alive I am. I wish I could feel like the world is teensy tiny again instead of huge and overwhelming.

     More than anything, I want peace. I want peace from all of the stress and pain of living with rheumatoid arthritis. I want everything to be spoken in whispers and kindness. I want simplicity and ease. I want spontaneous phone calls with friends and family and laughter that is light and airy. I want to bake with my sister while we discuss everything under the sun. I want to focus only on loving people, on staying with my flock, and on being kind. If sheep can prioritize these things, then so can I.

Wednesday, February 22, 2017

A Christmas Wheelchair: Tinsel & Bows

      I have always had a very rocky relationship with the idea of using a wheelchair. One piece of medical equipment completely converts me from a person with an invisible disease to a person with a very obvious disease, and the way I am perceived by strangers changes in a heartbeat. As a general rule, I would rather limp at a mile an hour to my destination than succumb to the wheelchair. The device feels like a pathway to the demise of any ounce of independence I have managed to retain over the past six years.

      During my sophomore year of high school, flares in my hips, knees, and ankles made ambulating around the school without a wheelchair impossible on some days. I finally gave in, bringing the electric red transport chair with me, and two generous friends kindly wheeled me between my furthest classes, Emily and Josh. What I thought was a terrible situation for everyone involved ended up leading to nice conversations and funny moments with these two, and to this day I still laugh thinking back to some of the humorous moments we shared. Emily and I used to sing as we went, and whenever we had fire drills Josh sprinted through the building pushing my wheelchair to try to get out through the front door, the only path that did not require stairs, before the hallway doors closed and locked on us.

      During the month of December, I decided that we needed to make use of the red color of the wheelchair by decorating it for Christmas. With the permission of one of my teachers, we threw a mini holiday party in his classroom during our lunch break, complete with cookies that I baked for everyone and more decorations than could possibly fit on one chair. Several friends helped me wrap my wheelchair in tinsel, secure Hanukkah stickers on the fabric, and add a few bows and bells tied on with ribbon. We then staged a frantic clean-up effort when we realized how much glitter was on the floor in an attempt to return the space to its normal state before my teacher returned from lunch duty, but if you have any prior experiences with glitter you have probably already guessed that this effort was futile. When our teacher returned to his newly glittered room after a few time-consuming distractions that we strategically set up to buy ourselves more time, I observed closely as his eyes scanned the tiny strips of tinsel scattered across the center of the classroom, but he assured me that everything would be fine and not to worry about it. At the time this reaction perplexed me, but looking back on it now, I think he was being intentionally gentle given my fragile state.

      For the rest of the month as Emily and Josh pushed me around our high school I was happy to assume that everyone was staring at the holiday decorations rather than trying to deduce a diagnosis by staring at my legs. Emily and I sang Christmas carols as we went, and some days we amped up our moving holiday display with Santa hats, holiday sweaters, and themed makeup. Even though I was using a wheelchair, a dreaded concept in my world, I was content.

     Outside of that December, my obnoxious stubbornness led me to continuously refuse the use of my wheelchair, even when my lower joints felt like they were crumbling. "Just use the wheelchair, Rachel," my teachers would gently insist, compassionately trying their best to be helpful in a situation that I am confident no one prepared them for. But to me, "just" seemed like a poor word choice; it was certainly not "just" a wheelchair to me, and using a wheelchair wasn't "just" something people do, at least in my mind. To me, my wheelchair was defeat. It was losing. It was a symbol of failure.

      I am only about four weeks into the spring semester, but I already feel as though I have lived a lifetime between mid-January and today. I feel at least ten years older now than I did starting college. Perhaps it is the medications, perhaps it is the additional pain, perhaps it is the absolute exhaustion of my body, or perhaps it is just the experience of being so sick and so far from home, but I often find myself thinking back to singing carols with Emily as she pushed me from chorus to my AP Government class and the many conversations that we shared during these six minute time increments. I realize now that the use of my wheelchair sophomore year brought me so much closer to her, and we shared so many moments of joy and laughter because of it.

     While I do not foresee ever being completely comfortable with using my wheelchair, the concept has become much more acceptable to me. Maybe I have quit fighting? I don't know. Battling arthritis seems admirable but far too exhausting at the moment. I'd rather focus on surviving it.

     I still wonder what the dozens of teachers and friends who repeatedly begged me to use my wheelchair for my own good throughout high school thought of me as I fought their advice. Did they wonder why I was so resistant, or did they understand all that I was trying to salvage by limping instead? Did they think I was too proud to take a seat or too afraid to let them help? Did they think I was being an idiot or that I was overthinking it? Were they frustrated, sympathetic, or annoyed? The best answer I can come up with is all of the above.

     My family is planning a summer trip, and part of my thinking when I suggested a particular destination was that it would be easy to use my wheelchair there, so none of us would have to worry about how I was feeling leading up to the trip. Even if I end up feeling great by the summer, I am going to bring it with me. My aching desire for an ounce of relief from oppressive pain and exhaustion has finally outweighed my stubborn, resistant tendencies. Wheelchairs used to feel like imprisonment, but now they feel like freedom.

     I wish that I could perpetually exist within the confines of the Christmas season, so that my wheelchair could always be wrapped in tinsel and bows. I suppose I could decorate it in a more summery fashion, but it just doesn't seem quite as merry. I'll work on that over spring break, though. I am convinced that having pretty medical equipment is inextricably linked to self-esteem.

     I have always been impressed by the willingness of Emily and Josh to help me move between classes. After all, they were only high school sophomores too, and assisting me was certainly not their responsibility. About ten friends helped me decorate my wheelchair, and whether they did it for fun or because they knew how important it was to me (perhaps for both reasons), I was so amazed by the ability of my peers to turn something I considered embarrassing into something cheery and cute. I am slowly learning that there is almost always the opportunity to create a Christmas wheelchair, and there will always be people around to help with the tinsel and the bows.

Sunday, February 19, 2017

Gratitude

      As most of you know by now, a lot has been happening with my health lately and I am trying desperately to get it all under control. I hope you all don't mind, but I thought that instead of going into the details I might jot down a few people (and groups of people) that I am particularly grateful for at the moment. I've been "looking for the helpers," so to speak, and luckily I am surrounded by so many wonderful people that it isn't a hard thing to do.

  • I am grateful for my dad, who drove 13 hours each way to spend last weekend taking care of me after several sobbing phone calls with my parents, lots of medical treatments, and utter exhaustion. My parents always take such good care of me and it was so nice to have my dad in town to get a break from campus and focus on returning to a manageable state of health. 

  • I am grateful for my mom and sister, who have been ensuring that I have everything I need, making me laugh over phone calls, text messages, and FaceTime, and encouraging me to hang in there by creating summer plans that I can look forward to.
Hannah and I enjoying our glory days
  • I am grateful for the Tulane Student Health Center, whose doctors and nurses have proven to be angels on earth. I am thankful for nurses who bring me dissolvable medications when I cannot eat or drink, calm me down during and after breathing treatments, provide me with blankets and free sunscreen samples, and promise me that I am going to get better. I am thankful for doctors who see me almost every day, allow me to participate in treatment decisions, and listen to my fears and concerns. 

  • I am grateful for my roommate Allison, who puts up with all of my tears and confusion, listens as I try to sort through some of what is going on, offers all the love and support a girl could ask for, never complains about my early bedtime, and lets me hold warm, fresh-out-of-the-dryer sheets.

  • I am grateful for my suitemates Maddie and Zada, who always treat me kindly when I have to cancel plans due to my health and who manage to make me smile even on my worst days with their wild stories and positive energy. 

  • I am grateful for my churches, both in North Carolina and in Louisiana, and for everyone there who has been thinking of me and praying for me over the past few weeks. 

  • I am grateful for countless friends, at Tulane and at home, who have offered their love and comfort in-person as well as over text, email, Facebook, and phone calls. Thank you for teaching me that you can never say "I love you," or "I care about you" too many times and that hugs are a solid form of medicine. Thank you for not disappearing when things get rough.

  • I am grateful for a particular New Orleans Walgreens, and for the pharmacist there who once saw me cry and is now one of my favorite New Orleanians. Compassion and empathy cannot be overrated, my friends, and this pharmacy knows that better than any other. 

  • I am grateful for my case manager, the disability center, and my academic advisor at Tulane, all of whom have been working with me closely and quickly to manage my illness from the academic side and communicate at-large with my professors. Their advice and support have been keeping me sane. 

  • I am grateful for my professors, who have shown incredible understanding in the midst of all of my absences and worked with me to maintain my course load and stay on track.

  • I am grateful for my local hospital, and for the ability to see my test results and schedule appointments online. The care I receive is integrated and coordinated, and as a patient and public health major I place quite a lot of value on this. 

  • I am grateful for the chronic illness community, for understanding all that I am going through and holding my hand, even from a distance. 

      There are a lot of scary things happening right now, and unfortunately the road ahead is littered with daunting decisions and frightening medical tests, but I have so much to be grateful for. Thank you all for lifting me up. 

Thursday, February 16, 2017

Three Lessons from a Sick 17-Year-Old

       My health has been uncontrollable, unpredictable, and honestly just downright atrocious over the past few weeks, but I thought that instead of delving into all of the details of everything that has been going on I could share a few things that I have learned through dealing with my chronic disease over the past few months. From the Never-Ending Strep Throat Crisis of the Fall 2016 Semester that we managed to solve surgically over winter break to whatever is attacking my system right now (acute? chronic? both?), I have certainly been thrown into a steep learning curve with my health. Below you will find three ideas that I have learned and accepted over the past few months. Perhaps I will change my mind about these later. Perhaps these are ideas you are already familiar with. Perhaps you do not agree with my takeaways. Perhaps they are not relatable for you. But I am sharing them in the hopes that perhaps they will make a few people feel a little less alone.
The visual result of a self-injection
gone wrong, which unfortunately feels
 very symbolic at the moment.

1. I am allowed to not know what to do. There is no universal handbook for dealing with polyarticular juvenile rheumatoid arthritis and its complications. Yesterday I found myself Googling "how to make tough decisions," and that is when I realized that absolutely no one has any easy method for determining what the right answer is for some of life's hardest questions. People write whole books on these things and dedicate their academic careers to determining the psychology behind it, and still no one seems to agree. We're all just living based on our best guesses and trying to figure out which options will hurt the least. I am no different, and I am not alone in making my decisions, even if they are ultimately up to me. I am allowed to stand in the shower motionless for ten minutes, unsure which droplets of water on my cheeks are from the showerhead and which are from my own eyes, and still not know. I am allowed to shampoo my hair twice because my brain is foggy and I am distracted by my own thoughts, and I am allowed to cry again because shampooing twice hurts the joints in my fingers so badly, and I am allowed to wrap myself up in the fluffy peach towel my dad bought me this weekend, and I am allowed to still not know. Moments like these are a normal part of decision-making, especially when the decisions are of greater consequence than which salsas to choose at Chipotle (always mild and hot by the way, never medium).

2. Frustrated doctors may invalidate my symptoms, but that does not mean that my symptoms are invalid. As an eleven year old who was repeatedly told to see a child psychologist for my pain and who was dismissed by rheumatologists until an ultrasound literally showed fluid in my joints and my diagnosis was confirmed, I became endlessly stressed and frustrated by doctors who insisted that all of my symptoms were in my head. The more upset I became by their false assumptions, the more they clung to these assumptions as an explanation for my distress. I tried to go stone-cold at appointments and started downplaying my symptoms in hopes of being taken seriously. I learned that if you try to play the game this way, nothing works.
     Luckily, after I received a diagnosis this obnoxious "you're just stressed" false narrative disappeared for a long time. Of course, I had to deal with (and am still dealing with) all of the emotional impacts of dealing with an incurable disease that causes constant and widespread pain, but sorting all of that out became a lot easier when the emotional symptoms were realized to be products of my disease rather than causes of my symptoms.
     I had a disappointing rheumatology appointment yesterday in which it was suggested that most of my recent symptoms, particularly my nausea, could be attributed to stress. This determination was made because I shed literally three tears when describing the ways in which debilitating fatigue has been negatively impacting my quality of life lately.
     I refuse to buy into the idea that I am not allowed to express any emotions in front of my providers. I want them to understand how upsetting it is to have to miss out on activities I enjoy because my body won't allow me to undertake them. I want them to know where my quality of life stands so that we can make positive changes to my treatment plan. I even want them to know how stressed my health issues make me, so that resolving them quickly and efficiently is viewed as a priority. While I was initially very upset by the outcome of this appointment, I feel so much more empowered and determined now than I did at eleven years old. I know that my symptoms are not attributable to stress. My parents know that. My rheumatologist at home knows that. My doctors at Tulane know that. My friends know that. If one rheumatologist wants to essentially medically punish me for being a human being, then that is his loss as a provider, because it is not something I will stand for. Of course, this is easier to say now that I am eligible to see adult rheumatologists (17 is close enough) and can fairly easily find a new one, but I still think it is a valuable lesson, and I hope that it is validating to any of you who may be struggling with this common medical predicament yourselves.

3. I am in charge of my treatment plan. During this same rheumatology appointment yesterday, I was advised to stop one of the medications that keeps my arthritis to a manageable level. After discussing this with my mom, we agreed to cut it in half instead. Previously, I thought that not following doctor's orders meant that I was an uncooperative, undesirable patient. Now I realize that I should always be offered options by my physicians and that my providers should expect me to be educated and empowered. I will never lie to my providers or blatantly disregard them, but I will be an active participant in my treatment plan, because, after all, it is only me who has to live with the consequences of whatever treatment plan I choose. Patient-centered care is a right, not a privilege.

    I wish I could say that I am feeling hopeful and positive at the moment, but, despite learning these lessons, I am not. I am feeling frustrated with rheumatology and frustrated with almost seven years of disease. I am feeling frustrated with decisions I have to make and frustrated with the feeling of powerlessness that has swept over me. Most of all, I am feeling frustrated with the ways in which my illness is directly prohibiting me from having a normal, healthy college experience. I continue to be grateful for all of your thoughts, prayers, and words of encouragement.

Monday, February 6, 2017

Keep Breathing

     My health has really been less than ideal over the last couple of weeks. Two Tuesdays ago I called my rheumatologist in a desperate attempt to secure any appointment earlier than my scheduled one in March. I told the nurse I was in an immense amount of pain, likely as a result of the Women's March, and that I was struggling with mobility and making it to my classes (although I haven't missed one due to joint pain yet.) Luckily, the hospital was very understanding and they offered me an appointment that Thursday, a real miracle on earth. After class I made my way to the hospital, where I was given a cortisone shot and my blood work was taken from me (per usual).

     How much is the cortisone shot helping? I am not sure. I thought maybe it was making things better for a short amount of time, but now my joints are back to hurting once again, and I am having widespread muscle pain that has persisted for a couple of weeks now. The symptom that is having the most damaging impact on my quality of life is my fatigue. I sleep for at least 9-10 hours every night, with absolutely no exceptions, yet I still feel dreadfully tired, as if I have not slept in days. When I am out and about, enjoying all of the excitement that New Orleans has to offer, all I can think about is how long it will be before I can crawl back into my bed. I love all of my courses this semester, but summoning the motivation to drag my aching body out of bed and to my classes is a daily mental and physical battle that I am sick of fighting. I am the type of person who normally gets up early and spends time doing my makeup, creating healthy breakfast masterpieces in the dining hall, and excitedly preparing for the day ahead. Now I always have to shower at night because I do not have the energy to shower in the mornings, and looking nice or eating breakfast is strictly reserved for special occasions.

     I have been thinking a lot lately of the Ingrid Michaelson lyric, "I want to change the world, instead I sleep." I suppose that is how it always feels. I am lucky enough to be getting a world-class education in a colorful city that holds countless adventures, and there are so many organizations I want to be volunteering with and activities I want to participate in and friends I want to surprise with sweet gestures, yet when I consider all of the possibilities my body reminds me that my only real option is sleep.

    I woke up unintentionally around 5 a.m. on Sunday morning and could not breathe. I grabbed my inhaler and took several more doses than I am technically supposed to when the first one did not work, trying not to panic. My chest still felt tight and painful. I woke up my parents back home, and for a few minutes I was ready to toss some clothes on and call an Uber to take me to urgent care, but I was literally too tired and my knees were killing me so instead I took a few more puffs of the inhaler, added some pillows so that I could sleep upright, and tried desperately to fall asleep despite the tightness in my chest. When I woke up again a few hours later, I was nauseous and running a slight fever, but I did feel capable of breathing again, even though it was uncomfortable. The nausea was no surprise, because I have been dealing with that acutely for several days now, but it is frustrating to no end and the unpredictability of it seriously stresses me out.

Receiving my twenty-minute breathing treatment
     This morning I went to the Student Health Center as soon as it opened. One of my favorite nurses, the one who always does my allergy shots, did my intake and was kind enough to set my appointment up with a specific doctor (at my request) without trying to talk me into any of the other physicians or nurse practitioners. The nurses here are well aware that a case as complex as mine benefits from seeing the same person every time. A couple of hours later, I received a breathing treatment and another steroid shot, along with instructions to make another appointment with my rheumatologist. I am now scheduled for future appointments with the same Tulane doctor at the Student Health Center, rheumatology, allergy shots, and my New Orleans ENT (my jaw has been wack since my tonsillectomy) all within the couple of weeks, and although it is overwhelming I am grateful to have access to specialists.

     The nurse who gave me my steroid shot and breathing treatment remarked that I am "probably used to being poked and prodded." Truer words have never been spoken. She was also very understanding when the breathing treatment made me all jittery and nervous, a fairly common side effect. Despite the downsides of both the breathing treatment and the steroid shot, I am glad to breathing better this afternoon and to have regained some lung capacity. I even got to keep the tube as a souvenir (I'm supposed to bring it back for my appointment on Wednesday so I do not have to pay for two separate tubes if I get another breathing treatment). I am still feeling pretty sick, but today is definitely better than yesterday, and I am grateful for providers who offer their very best care, even early on a Monday morning.

"All that I know is I'm breathing. All I can do is keep breathing."

Sunday, January 22, 2017

Girl Power

The Women's March on Washington, with Sister Marches Around the World
January 21st, 2017

Nasty N'awlins Women gearing up in Washington Square Park
      Women from all across the globe rose up yesterday to protest the continual oppression of women and demand our rights, and I was proud to be one of them. Originally I was planning to go to D.C. for the Women's March through the Newcomb-College Institute (basically a mini women's college within Tulane), but after several discussions with my parents and a brief conversation with one of my doctors, we determined that this was not a viable option for me. Sitting through two 17-hour bus rides in the span of two days and marching in between would have been brutal on my joints, and I was reminded by my surgeon that I am "still very much in recovery." However, I am incredibly proud of the amazing Tulane women who did make the journey up to D.C.! My roommate Allison and friends Ella, Juliana, and Sarah marched with over half a million women in our nation's capital. I was thankful to be able to participate in one of the Sister Marches here in New Orleans, Louisiana.

Left to right: Allison, Ella, Juliana, and Sarah
Thank you for marching!
     The lead-up to the march was stressful - Friday night was rough for me. As I am learning more and more about the healthcare system here in the United States through my "Foundations of Healthcare Systems" public health course and readings, I am becoming increasingly concerned about the major impact the repeal of the Affordable Care Act will have on my life. My biologic medication for the month of January cost almost $2,000 with insurance. While it will not be this high every month, I really cannot find the words to convey just how absolutely ridiculous that is. This medication is the difference in me being in a wheelchair and being able to go on runs in the park. It is the difference in feeling wrapped up in the chains of chronic illness and feeling free. My health is way less than ideal even with it, and I do not want to think about what might happen if it is taken away from me by greedy corporate powers. Our healthcare system is broken and flawed even with the Affordable Care Act, and without it things are only going to get worse. Repealing the ACA removes patient protection from health insurance discrimination against people with pre-existing conditions. Here's a shocker: I have a lot of these "pre-existing conditions," all of which are pretty expensive to treat and put me in high-risk categories that no one would feel comfortable gambling on. I am also extremely concerned about the reduction of birth control coverage. I started birth control in an attempt to deal with anemia of chronic disease, a complication that affects many kids with juvenile rheumatoid arthritis and causes upsetting symptoms such as hair loss and fatigue. Of course, my biologic and birth control are only a few of several medications I rely on to live a life that is as normal as possible. How in the world am I going to get quality health insurance with a diagnosis like juvenile rheumatoid arthritis? How am I going to maintain my high quality of life?

Three incredible women I had
the pleasure of meeting yesterday.
 I would like to be able to look in the eyes of everyone who voted for the current and incoming administration and ask them why they voted to refuse healthcare to people like me. I would like to know why they would prefer that I spend my days locked up in my room with swollen joints than out trying to experience all that life has to offer. I would like to know why they approve of a few milliliters of liquid costing thousands of dollars a month. I would like to know why they voted for someone who very publicly and unashamedly mocked a journalist with a disability that affects his joints to be the President of the United States. So if you are one of these people and would like to answer my questions, be my guest. But please remember and consider that whatever reason you give for the way you voted is more important to you than my ability to function and live a happy and healthy life. Certainly there are many things that are way bigger and more important than just me, but just as a not-so-friendly reminder, emails are not one of them.

Representing with my Planned Parenthood shirt
and Angel of Grace arthritis awareness bracelet.
    I went to bed on Friday night absolutely terrified, envisioning myself learning in the near future that my biologic, the only medication that has a significant positive impact on both my short-term and long-term health, is no longer an option. So when I woke up not feeling well on Saturday, I knew that I had no choice - I knew I must go and march with all of my sisters around the world who are experiencing similar and even much different fears on the basis of their gender, sexual orientation, race, immigration status, disability, and/or religion. I packed a bottle of ibuprofen, my inhaler, my pink medical mask, and a couple of Zofran in my bag, slapped on my arthritis awareness bracelet, tossed my beloved Planned Parenthood shirt over my head, and boarded a packed streetcar full of other nasty women who refuse to normalize this crap. If you would like to learn more about the specific connections between feminism and my health, or if you are curious about the intersection between the Women's March and chronic illness, please check out my post from just over a year ago, "Why My Chronic Illness Demands Feminism," which features me wearing this exact same Planned Parenthood shirt.

     All of the nasty women in New Orleans gathered in Washington Square Park, a green space on the edge of the French Quarter, prior to the march, where we listened to a variety of speakers while greeting each other and bonding over our shared love of human rights (something I suspect men never really do). I adore situations like these, because even though I am pretty introverted I love meeting people, especially people older than I am, and soaking up all of their wisdom. There are so many smart, courageous, passionate, and relentless women in this world, and meeting even just one of them is a blessing beyond compare, so being surrounded by thousands of them at the New Orleans Women's March was just too much for my mushy heart to handle. I went into yesterday's march needing to find the good in the world, and let me tell you, it was there.

     The actual marching process was when I began to realize what a terrible situation this was for my joints. To use one of my most common phrases, I was in a pickle. I had already walked over a mile from the streetcar to the starting site of the march and stood for a long time listening to all of the speakers and cheering on powerful women, so by the time we were actual moving down the streets of the French Quarter toward the Central Business District even the distracting nature of the march could not pull my attention away from my aching hips for more than a few seconds at a time. I was clenching and unclenching my fists and rotating my wrists in hopes of retaining as much range of motion as possible in my upper extremities since I could feel them swelling up, but this became exhausting and I finally gave up about halfway through. I stayed close to the sidewalk, afraid that my nausea would get the best of me. I bit my lower lip and scrunched my forehead in a last-ditch attempt to hold back tears while every step I took caused excruciating pain to slam against my ankles, knees, and hips.


    Perhaps some of you are reading this and thinking, "Hey, Rach, maybe going to that march wasn't the best idea, it seems like maybe it didn't go so well for your body."

     You're right. I am too sick to be doing something like this. I am too sick to be marching through the French Quarter in a germy crowd of people on a warm, rainy NOLA Saturday. I am too sick to be risking by ability to attend class this week simply by putting one foot in front of another and coming into close contact with other human beings. You're right. But guess what? I have to do this, because marching will be much less detrimental to my health than having my treatment revoked because some rich and healthy people who unfortunately hold a lot of power in this world have decided that stripping me of medically necessary injections that reduce my pain to mostly bearable levels is a good and moral idea. So yeah, I marched. Yeah, my arthritis pain level right now is probably the highest it has been since I started college. Yeah, getting out of bed today felt like running a marathon. Yeah, I skipped breakfast this morning because my hips hurt too much to walk to the dining hall. Yeah, I'm salty about it, because I should not have to march for such basic human rights. But there I was, and here I am. If you want me to feel better, stop suggesting that I take some extra time to rest and start calling your congressional representatives, advocating for people with disabilities, supporting funding for medical research, and voting for politicians who actually care about whether or not I can access my medications and the specialists who prescribe them.

     The primary reason that I write this blog is because I believe in the power of storytelling. I believe that sharing our experiences makes our local and global communities stronger. Publishing posts that detail the many difficult moments of spending my life from age eleven onward fighting against rheumatoid arthritis is not typically cathartic or therapeutic for me. I do not make money off of this blog and I often feel overwhelmed by the prospective of sharing so much of my life with whoever feels compelled to click on this link. But stories are powerful. That is a fact, and that is what I repeatedly remind myself when I feel reluctant to share parts of my own story. I wish I had realized this early. I wish I had realized it a few years ago when friends, family members, and teachers were begging me to let them into my world, one that felt like a black hole to me at the time. I wish I had allowed them to view my story and demanded substantive change in the way people with chronic illnesses are treated in this world. If you have a story to tell, if you have a reason why this administration is so concerning to you, please share that story, at your own pace and when you are ready. There will be thousands of nasty women like me here to listen and respond. And if my story has ever meant something to you, I am pleading with you to channel whatever it is that this blog has given you at some point over the last year - hope, despair, joy, or concern - into concrete actions aimed at protecting healthcare and advocating for women with disabilities.

     There were a bazillion children at the New Orleans Women's March, and I always have such admiration for parents who bring their kids to these sort of events, because toting kids around can be logistically difficult and protests can be chaotic. The NOLA march kicked off with a jazz funeral for Lady Liberty (have I mentioned how much I love this crazy city?), and as we found ourselves in a gridlock-induced standstill while waiting for marchers to begin filing out of the park gates, I listened to a young mother explain to her three- or four-year-old son who Lady Liberty is and the symbolism of having a jazz funeral for her. I do not know who that mother is and I do not know who that child is, but in that moment the future looked so spectacularly bright. Later in the march, I found myself walking next to a set of parents who were pushing a very young child in a stroller while their six-year-old daughter danced through the streets of the French Quarter, clearly feeling strong and empowered by the presence of so many other dedicated women. Every few minutes, she would lift up her chin and scream at the top of her lungs, "Girl power!" and the rest of us would scream it back in solidarity. Leading all of us made her feel so special, impactful, and important. I wish that she, and every other little girl, could feel that way for the rest of her life. Girl power gives me hope in a world in which boy power has consistently failed. Girl power gives me a reason to dream. Girl power makes me want to have a daughter one day just so that I can remind her of her worth and value in this world. Girl power means that I can tackle even the most overwhelming of setbacks. Girl power meant that my shaking limbs but loud voice could make it through that march.

     After the march reached City Hall, I stayed for a bit to cherish the time with so many amazing (nasty) women and listen to more speakers. I had the privilege of meeting other women for whom the repeal of the Affordable Care Act is a very real and pertinent medical concern, and we shared our fears with each other and promised to keep on fighting, no matter what happens. We discussed how far our country has to go on compassionate policy toward people with illnesses and disabilities, even if by some miracle the ACA is allowed to stay intact. There are millions of Americans who will experience the tragic effects of an ACA repeal in even more drastic and negative ways than I will, and I am advocating for them just as much as (if not more than) I am advocating for my own health. I am privileged to have two rheumatologists, live in areas with excellent healthcare, and have a pharmacist mother who understands the system. I have a loving family that is willing and able to make sacrifices for my health and friends who stick with me even when times are tough. No one should lose their life to policy. Congress should not be allowed to order the deaths of thousands of people who just want to feel better. What can save us from this hopelessness? Girl power.

      After exchanging some email addresses and phone numbers with likeminded marchers, I made my way back to the streetcar, accompanied by an afternoon New Orleans drizzle that luckily did not turn into downpour until after I was onboard. Usually during peak hours the streetcar is a real struggle for me, because if I take a seat people shoot me sharp glares suggesting that I should leave them for people "who really need them." Having an invisible illness means lots of judgment but very little ability or desire to explain myself, and even though I know that I should probably not give in to this lack of empathy, I usually just stand because the glares stick with me for longer than the joint pain. I am convinced, however, that God was on my side yesterday, because I managed to spot an available seat next to two compassionate women on each of my trips, even though the streetcars were packed and most people were standing. I like to think that Jesus agrees with my conviction that if people are going to rip my health insurance out from under me at some point, the least they can do is save a seat for my aching bones.

     When I returned to campus after the march and after standing/walking for upwards of six hours, I limped to the dining hall, ate a banana and some cantaloupe (you really just have to go with whatever your stomach wants when you're nauseous), took a cold shower in the hopes of calming my fiery, swollen joints, and collapsed in my bed. I sent emails cancelling all of my activities for Sunday (today), and even though I feel horrible about it, I know that I am doing the right thing by focusing on rest and recovery. I am going to do my very best to attend all of my classes tomorrow, but we will just have to see how that goes. As I mentioned in my most recent blog post, sometimes I have to stay back for a little while, and I am slowly learning that that is okay, too.

      The road ahead is downright terrifying. To my many sisters out there who are scared of the changes (or lack thereof) to come, I have your back. And to everyone reading this, I hope that we will move forward by taking each others' hands, calling our representatives, sharing our stories, seeking out the stories of people leading much different lives than we are, and becoming safe spaces for hurting people.

The future is female. 
Women's rights are human rights.
My liberation is bound up with yours.
We are stronger together.