Thursday, December 28, 2017

Post-Op & Pre-Injection

       On December 19th, I had my second surgery and third round of anesthesia this semester. My surgeon straightened my nasal septum, changed up all of my sinuses, and removed my adenoids. I went into the surgery very nervous, but had to wait until after I signed consent forms to be drugged into a calmer state. So there I was, in my hospital gown, watching Charlie and the Chocolate Factory on a small television in the top corner of the room, tears flowing steadily down my cheeks, when my surgeon came in and explained all of the slicing he was about to do to the inside of my face. I tried to block it out (disclaimer: informed consent is really important and I am not trying to minimize that) because I was in no position to object to anything given my lack of surgical knowledge and emotional distress and really preferred not to hear about all of the ways my face was about to be torn up. The nurses, anesthesiologist, and surgeon treated me kindly as I was wheeled back into the operating room and I came out in less pain than I expected, which was a pleasant surprise. Yesterday my septum splints were removed and the inside of my face was vacuumed out (and I have to go back in a week for more vacuuming - I wish I was joking). But all in all, I am just feeling very glad to be done with surgery for the foreseeable future.

I took this picture while we were watching "The Sound of Music" for no reason
other than my love for nuns. Usually people think I am kidding when I say that I
would love to be a nun, forcing me to explain, "No, I'm not kidding... I've
genuinely looked into various orders and convents."
       I have been delaying writing this post, because every time I thought that I was perhaps ready to publish something new I opened my phone to a conversation I had absolutely zero recollection of, and when I thought I was doing okay on the pain medications my sister informed me that I quite literally sobbed over a fortune cookie in an Asian restaurant. I sent pictures of my dog that I don't remember sending, asked questions that made no sense, posted on social media using way too many exclamation points, and uploaded a picture to Facebook of me dreaming about being a nun with a paper towel on my head while watching The Sound of Music with two actual, real-life friends who are saints for still talking to me after such an odd incident. So when I considered all of these things, I somehow made the wise decision to stay as far away from my blog as possible.

This little guy kept me VERY
 happy post-op!
       During this entire academic break, I have found myself overwhelmed by how kind everyone has been to me, especially over the past three semesters. I visited New Orleans right before surgery and reconnected with many friends in the four days that I was there. Visiting all of the people who carried me through such a vulnerable time in my life infused me with the strongest sense of gratitude I have ever felt and offered a lot of closure that I had been unable to find in Chapel Hill. Right after my surgery, friends generously carved out time in their busy holiday schedules to come by and visit me, bringing laughter and hugs and empathy. One of my friends even took me to Target and helped me make my way down my shopping list ever so patiently as I constantly became distracted. Dozens of people checked in on me and asked how I was feeling even when my responses were slightly incoherent. I managed to attend three services on Christmas Eve, and even though I had to sit down during a hymn in the first one out of a fear of passing out and felt like I was running a fever by the third, it was a joyous time and I was so grateful that I was able to make it. My throat was so sore during the final service that I was unable to sing at all, but I embraced the moment as a time to hear the fullness of the congregation singing around me, an opportunity to listen that I do not take up as often as I should. I feel like the luckiest 18-year-old in the world. A life full of love and friendship and kindness - what more could I ask for?

Walking in Audubon Park, my very favorite place in New Orleans.
This soil soaked up many of my tears last year.
       It might sound naïve based on what a hot mess my last three semesters have been, but I am so excited to start my fourth semester of college and I am eagerly anticipating classes that I know I will fall in love with. I am dreading all of the "Hello, I'm Rachel, and I'm thrilled to be here but my body actually doesn't do college well at all" accommodations talks that I will have to have with all of my professors, but I am taking two of the same professors as I did last semester so hopefully this will ease the burden a bit.

       I am probably being way too bold with this and potentially setting myself up for major disappointment, but I have already been thinking about all of the things I want to do with the extra time I anticipate having next semester since I do not anticipate being ill. I want to be more involved in my church, I want to write more cards, I want to reach out more to my friends, I want to go for long walks bundled up in all of my winter gear. I am sincerely hoping my body will permit all of these things.

       Today I am starting Humira. My first injection will be in just a few minutes, since I am waiting for the syringe/medication to warm up a bit from the refrigerator, and while I am nervous about it given that the consensus from all of my arthritis friends seems to be that it is the most painful injection of all of the biologics, I am ready to try something to get my body under control. The gist I got at my last rheumatology appointment is that Humira works more systemically than my previous biologic, which targeted only my joints, so the hope is that it will control the damage all of the other parts of my body are incurring as well, even though we do not have an official diagnosis.

       I will be starting the new semester with a new septum, new sinuses, and a new medication. Hopefully this means I will be a better, healthier version of me. I have been thinking a lot lately about how people always say that all that matters is that a baby or child is healthy, or that they cannot complain about their struggles because "at least [they] have [their] health." Whenever I hear people say this, it first forces me to wonder whether or not I am a disappointment, and then I just want to take their hand and promise them that there is a wonderful life even in the absence of perfect health. I want to tell them that joy has existed alongside all of my flares and illnesses. It is not a joy that excludes sadness or terror or frustration, but it is a joy pervasive enough to make my life a thoroughly good one, with or without consistent health.

       During periods of good or at least fine health, we speak about losing one's health as inconsolably devastating. Sometimes, this is true. I have had my fair share of moments of crying on the bathroom floor or having to sit down in the middle of a high school hallway because walking hurt too badly. Yet I have also had my fair share of churches whose deacons send letters full of compassion letting me know that they are praying for me and friends who have held me in their arms as I shake with pain. And, of course, I have many joyful moments with no relation to my health at all. I have the delight of hymns that sink deep into my soul and lunch dates with friends with huge hearts and new eyeshadow palettes that glimmer with possibilities. I view health as an inherently good and important thing, as in obvious by my authorship of this blog, my passion for patient advocacy, and my medical treatment of my own illnesses, but physical health is far from the best thing to have. There is no need to glorify health or use it as the sole indicator of whether someone is doing well or not. I have many, many other things that are better.

Tuesday, December 12, 2017

A Semester Behind Me

      I am so, so tired. This semester chewed me up and spit me out. I expected to feel triumphant upon finishing my final exam at 9:45 this morning, but I feel broken and weak and weary. Yet this brokenness is forced to coexist with the fact that I also did something I thought I had no chance of doing just two months ago: I finished a full course load during my first semester at UNC.

      Many people have told me that they are proud of me and/or that I should be proud of myself, but as appreciative as I am, I am struggling to embrace that sentiment. I cannot convince myself that I am proud of the semester, but I am relieved. Maybe relief is the best I can do right now.

Hannah & I - Mortality Beach Day

     On Sunday, particularly in the morning, I dealt with severe nausea, but I was determined to make it to church, because I figured that if I was going to have a completely empty stomach I might as well have a full soul. I stuffed my purse with plastic grocery bags, hoping that I could at least prevent my class and the congregation from hating me if I continued to be ill every 10-15 minutes. I drove to church, allotting myself 20 extra minutes because I was so sick, but was only a pinch away from driving straight to urgent care for IV fluids and injectable anti-nausea medication considering that in the 3 hours prior to when I sat down in my car to start the drive I had already vomited over a dozen times. I stayed in the right lane and became obsessively aware of all the places I could potentially pull over. I ran inside and threw up as soon as I made it to church, stared blurrily at my teary, bloodshot eyes as I washed my stiff, arthritic hands in the sink, and contemplated lying down on the carpet of the classroom for a few minutes before everyone arrived. I decided that even severely nauseous people can be classy, so I sat in a chair with my head rested on a pillow instead. In a true Christmas miracle, I began to feel like my vomiting was over, but I was exhausted and the reduction of the nausea forced me to finally notice the swelling in my hips.

      During communion, I quite literally begged God to help me hold down the blood of Christ. I ate lunch successfully and thought I was completely recovered, and then upon drinking one small cup of water after an evening service I found myself vomiting in the church bathroom yet again. It was a day of desperation and defeat, especially considering that I had two exams yesterday and two today and no desire to study with such a painful stomach.

      I woke up yesterday feeling pure gratitude for my lack of nausea, but in the middle of my first exam my medical blessing was quickly replaced by a fever, sore throat, fatigue, and abdominal pain. I fought through and took another exam yesterday afternoon, submitted a final paper that is technically due on Wednesday last night (I am feeling miserable, but I need to be done), and finished my last final at 9:45 this morning.

      I walked out of the accommodations center this morning with the entire semester behind me yet with so much ahead of me. I was and am so exhausted. I walked down the stairs and out of the building feeling my hips and knees and ankles all too vividly, reflecting on what a difficult semester I have had and wishing that someone could wrap me up in a cloud to allow me to truly rest for a little while. Before  I could even make it outside, I threw up in a restroom, and now, even as I am writing this in a heated space, I am shaking uncontrollably from internal chills.

     Today also marks a week before my next surgery, which will be my third time undergoing anesthesia since mid-October. I am nervous for recovery, nervous about the medications that make me loopy, and nervous about pain. In between now and then, I am visiting New Orleans to catch up with some of the incredible people who have supported me since the very beginning of my college career. Finishing an unbelievably painful semester, visiting a school that I adore but that was snatched from me by my health, and undergoing surgery all in the span of one week is overwhelming. I am hoping that life will be peaceful after this.

    I wish I had some grand lesson that I learned from this semester. To be honest, it just hurt a lot. More than I thought it could. It is not a tragedy, but it would be wrong to try to warp it into some motivational story. I had appointments and underwent procedures with over ten specialists, none of whom have been able to diagnose my current symptoms, and I was instructed by my doctor to wear a mask literally everywhere I went, and I took more than thirty days worth of three different antibiotics, and I brought my nebulizer just to watch Netflix with friends because I was so scared of not being able to breathe, and a mystery autoimmune disease made me feel more alone than I have ever felt, and a boy in my English class told me he would kill himself if he were me, and I underwent a minor jaw surgery, and my beloved dog, who suffered from arthritis just as I do, died, and my chest hurt so badly that I ended up in the emergency room at 2 in the morning, and I cried in the offices of several administrators as they helped me to decide whether or not to withdraw.

   That is one narrative, and it is a crucial one. I am afraid that I will be sugarcoating it by tying it to another narrative, but it feels impossible not to, because these two realities coexist.

    A rheumatologist looked me in the eyes and told me she believed me, and my friends assured me that my medical mask was cute and fancy, and my infectious disease specialist freed me of antibiotics as he released me from his care with an astounding degree of empathy, and a friend took my hand and sat on my bed with me when the nebulizer permitted panic to seep in, and my community rallied together to raise over $2,000 for the Arthritis Foundation, and one of my English professors implored me to just keep breathing, and my mom held me in her arms as I recovered from all of my procedures, and I had the opportunity to see my beloved dog trudge through the sand and stick her paws in the ocean before she died in my arms, and my professors worked with me to accommodate such rapid and mysterious changes in my health, and I was able to keep all of my academic courses without missing a single assignment.

    In some ways, I hope this semester counts as a failure, because I do not want this to be my success. I am still processing all that has happened. I have no idea how to describe it. I know that I am glad I am done. I am glad that these awful three months are behind me. At the same time, I feel unusually lucky. I have had so many people rooting me on and pulling me up from the ground and assuring me that everything will be alright, and I am painfully aware that this support system is not something everyone has the privilege of depending upon. So thank you for believing me, and thank you for staying, and thank you for all of the tears you have cried with me, and thank you for all of the hugs, and thank you for going through this mess of a semester alongside me.
    On August 21st, the day before my first day of classes at UNC, I published a post in which I wrote, "I am giving my goal of a positive, relatively healthy college experience another chance." So here I go, giving myself yet another chance to try to experience college at its best in the spring. Don't tell anyone, but I am very, very hopeful.

Saturday, December 9, 2017


     What do you do when your illness seems to be stripping away the very essence of who you are? Well, I don't know have the answer, but it is a question I have been repeatedly confronted with over the past couple of days.

      Yesterday, when I left a lovely lunch with a friend and walked back to my car, I felt intensely lightheaded and dizzy, like I was having an asthma attack that was reducing my blood oxygen without actually having lung inflammation. My muscles felt achy and definitely not terrible but definitely "off," my chest was hurting in a way that did not feel like costochondritis, and the nausea that I had assumed that I had knocked out earlier in the morning with Zofran had returned. My first instinct was to go back inside the store/restaurant, because I was about 50% convinced that I was on the verge of passing out and did not necessarily want this taking place while I was isolated in my car, but I also had a strong feeling that I might throw up if I stood up again so I sat in my car for just a moment. I tried to ground myself, leaning my head back with my chin up towards the car ceiling as if I was waiting for healing to drop down from heaven, before I decided that I was definitely okay and safe to drive. Feeling somewhat better, I headed off to my next activity.

     As I was driving, I thought about plane tickets to Paris or Cape Town or Buenos Aires or Seoul. I thought about traipsing through Spain or meeting new friends in India. Whenever I become fixated on flights I know that I am not at all myself, and that I am trying desperately to find something bigger, grander, and greater. At the same time, I want something smaller, cozier, and more intimate. I want conversations about memory in the library at 2 a.m., I want to consistently have the courage to take someone's hand when I know they are hurting, and I want to bake desserts using recipes that are way above my skill level and destined to become sugary disasters. Desires for something grand and for something simple seem to coexist.

Shout out to Ben and Jerry's for their
vegan flavors, and shout out to my
stomach for being able to handle it. 
      Later in the evening, I found my muscles so achy and my body so inexplicably exhausted that I locked my car doors, fell across the center console and the passenger seat, and took a twenty minute nap in a parking deck. I would never do this normally, but I quite literally could not summon the energy to walk to my dorm or to a library or really any other building in which sleep might have been even remotely acceptable. I felt so broken, but did not even have the energy to cry. "I am feeling really not like myself," I texted to a friend, slightly confused about how to order my words, but this explanation seemed to fall short of what I was actually experiencing and so I barely put any effort into further describing the situation. My fingers stumbled clumsily over the keyboard and my phone felt heavy in my hand. With the sense of longevity that sometimes so cruelly accompanies pain, I wondered if I would ever feel like myself again. I pondered this existential question this while slumped across the seats of my car with some of the heaviest fatigue I have ever felt.

    By late last night I was able to laugh about these incidents, the ridiculousness of this entire semester, and the weird health challenges my body is always testing me with. But all of these moments in the car were not funny. They were terrifying. Not feeling like myself is not funny, either. It is equally, if not more concerning than the purely physical symptoms, a direct and explicit threat to my personhood that leaves me feeling completely lost. I feel like everyone is so worried about all of the parts and pieces of me, my lungs, joints, heart, tendons, muscles, esophagus, stomach, lymph nodes, etc. The truth is, in my most desperate moments I pray for intactness, not for each system or bone. I pray to feel like myself and for my sense of identity to be preserved despite all of the medical chaos. Intactness is a difficult element to measure, considering that I cannot peer into another reality and see where I would be without all of my health problems. Perhaps it is a good thing that we do not have the ability to see our best selves.

    Whenever I picture the life of a healthy me and scold myself for not accomplishing all that I imagine her to have achieved, I think of a comment my dear friend Cara left for me about a month ago. "The best of you is just a saying from those who have never experienced chronic disease," she wrote, "you ARE the best you can be every day."

      I also think of a conversation I had with Faith last year when I was in New Orleans. I had called her in the midst of what I now know, looking back, was one of the most desperate and lonely moments of my life so far. "You are doing your absolute best," she assured me, gently but with a tinge of authority that forced me to accept her reminder. Maybe a nap in a parking deck yesterday was my best. I am grateful for these two friends and their healing words.

     When I am really not feeling like myself, I try to be intentional about doing things that restore my sense of identity. Hanging out with old friends, watching Grey's Anatomy, cuddling up with my dogs, writing essays, and doing my makeup all remind me of who I am and what I enjoy. Today, I had the opportunity to spend most of the day shopping with my sister, Hannah. I almost cancelled our outing, because I woke up with painful knees and fingers, but I decided to push through because I knew spending the day resting would be good for my body but not so good for my soul. I looked rough and felt rough, but I enjoyed the snow and enjoyed shopping and enjoyed time with Hannah, and these are the things that will matter even many years from now. So why did I skip studying for finals to go to the mall? Because this is the only way I know how to live in the face of all of these questions about who I am and whether or not I will be okay. Perhaps it is not the best or most sophisticated way, but it is the only way I have figured out.

       I hope to stay intact, especially if the lightheadedness becomes a recurring problem, which I do not anticipate but would not be shocked by given all of my other #MysteryIllnessCrisisOfFall2017 symptoms. I hope to feel like myself, and I must admit that I am pretty anxious about this given that I am having surgery in just ten days, after which I will certainly not feel like myself for a little while during recovery. I am lucky to have wonderful friends, both at UNC and elsewhere, who stick with me even when I don't feel like "me." I cannot imagine how much more painful yesterday would have been without quality time with three different friends, each of whom offered words of encouragement and empathy and understanding. I cannot imagine pushing through today without getting to see Hannah, my hilarious and gorgeous sister who seems to view me the exact same way whether I am bouncing around or warning her that I might throw up at lunch. If they all managed to see a "me" through all of this mess, then maybe I can manage that, too.

Thursday, December 7, 2017

Waiting Room Reflections

Written earlier this afternoon.

       I am sitting in a physical therapy waiting room hoping that my new physical therapist will like me.

       I like to think that at this point in my life I am an ideal physical therapy patient (unlike me circa 2012). I requested this referral from my new rheumatologist due to ongoing hip issues and inflammation in some of my tendons, so I am not being dragged here by anyone but myself. I make jokes about my health and try to ask good questions. I like to chat about reality television and I am generally compliant.

Random update: my lungs have been TRASH over
the past two days! Thank goodness for nebulizers.
       Sometimes I am too compliant. One of my previous physical therapists, who I saw in middle school, was visibly bewildered by me. She would assign me stretches to do and instruct me to tell her if it hurt, but I was so determined to successfully accomplish the exercises that we would not stop them until I had hot, grey tears running down my face, because I refuse to quit and I also refuse to wear waterproof mascara. She was frustrated with my refusal to raise a white flag, and little by little I began to resent her for making me do exercises that exacerbated my pain so much while also recognizing what a difficult patient I was being and feeling sympathy for her. But hey, middle school was hard for everyone. 

       So I am going to try not to go the wait-until-it-hurts-so-much-that-I-am-literally-sobbing route this time, just to switch things up. If my physical therapist is not deeply invested in reality television I have no idea how this will be a healthy PT/patient relationship, but I suppose I will do my best regardless of media preferences. I suppose my physical therapist and I don't have to be friends, but if someone is going to be manipulating my hips and yanking my bones apart I would like to at least know how their day is going and which season of The Bachelor is their favorite. 

      When I was calling to make today's appointment, I mindlessly allowed the scheduler get all the way to the "Have a great afternoon," part of her spiel before almost spitting out a mouthful of iced coffee to squeeze my most pressing question into the final moments of our conversation, "Could you please tell me the name of the physical therapist I am seeing?" Although I like to think that I am a better person now than I was in middle school, I was by no means trying to see this same physical therapist, and I was relieved when she answered with a name I did not recognize. 

      If this physical therapist ends up hating me, I will still leave having made at least one friend, because there was a toddler in the joint waiting room who already went back for an appointment who I found myself bonding with over some blocks and a Dora the Explorer sticker. Her mom was clearly exhausted, I miss kids, and the toddler was bored, so this friendship blossomed perfectly. 

      There is something so humbling about waiting rooms. In a way, I feel as though I am being reminded of my identity as a patient. "You are sick," old People magazines and beige walls scream at me. I used to see waiting rooms as intimidating, but now I just see them as a way of making new friends, especially when I am at appointments by myself. I love being able to dive right in and have a meaningful conversation with someone based on our shared identity, one that we both fully yet cautiously embrace as we sit in plastic chairs and pause when a nurse comes out to ensure that our names are not being called. Somehow I always end up bonding with the moms, too. 

      I have been thinking a lot about the lyrics, "You're not what you thought you were," lately, and how maybe my identity is not necessarily what I assume. I try to picture myself through the lens of a physical therapist and see an absolute hot mess with a million medical problems and complex history who is not quite friendly enough when she is being made to move arthritic joints. When I picture myself through the lens of my friends, I see a trainwreck of a student who cries way more than normal and who is sort of losing her mind and always needing help. When I think about myself, I see a girl who almost withdrew from college this semester and who is a pinch too emotional and who will always be catching up but never caught up. I scold myself for talking too much when I should be listening and for talking too little when I should be speaking up. I feel the identity of a girl who is caught between pain and medications that help with pain but make me feel foggy. I wonder who I would be without any of it, if I had lungs that functioned to their full capacity and joints that moved without pain and if I never had to drop a pill onto the back of my tongue and lean my head back in a ritualistic swallow that has become its own form of prayer. 

     I think there is a possibility that I am not always who I think I am. Maybe I am none of these things. Maybe I need to give myself a bit of a break and walk into this appointment knowing it is about my mobility, not an evaluation of who I am as a person. But when your mobility consumes so much of your life, this is no easy task. I want to be a person who smiles and laughs through pain. Sometimes I am this person, and sometimes I am not. Perhaps that is true for all of us. In some ways, there is so much relief that comes along with being ordinary, and so I have been gripping to all of the conversations I have had recently that remind me that everyone is struggling in one way or another. I have tried to be intentional about reminding people of the lens I see them through. I do not know if it makes any difference in this world, to be honest, but given the stakes it seems like it is worth a try.