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."