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

Intactness

     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 trapezing 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. 

Thursday, November 30, 2017

Pain

     I have been in a ton of pain today, in an on-and-off pattern, and it is just finally catching up to me. As I am writing this, I feel like someone has twisted the middle joints of my fingers all around and they ache terribly. My ankles feel tender inside my shoes. My wrists feel like they are bruised inside the bone. "I want to cry," I have told several people, in a joking tone but in complete seriousness. I do not know if I was hoping that someone would see through it or that no one would.

Drinking this entire cup of coffee: college-student-who-
is-also-fighting-medical-fatigue desperation at its finest
PC: Alana

     I have had to catch my breath a few times when the pain has washed over me in almost unbearable waves. I have spent the day scolding myself for not starting back on my Arava sooner, and for not calling the specialty pharmacy that arranges my Humira. I have given a presentation with half of my mind focused on the words coming out of my mouth and the other half focused on my painful, painful, painful body.

     There is something so simple yet so upsetting about physical pain. I have been living with it for so long that on days where it seems to win out I feel like I am letting everyone down, myself included. I have actively stopped myself from mentioning a hurting joint in conversations with friends. I do not want to bore people, and I do not want to complain. Elaine Scarry, who studies pain, writes, "to have great pain is to have certainty; to hear that another person has pain is to have doubt." I fear not being believed. I fear people thinking I am exaggerating pain. I know they do, because I am human too, and sometimes I catch myself doubting other patients, and then I repeat Scarry's quote in my mind and try to think and act more empathically. Sometimes, pain makes me feel like I am living in a different reality, one that is a few degrees removed from where my friends are.

     I have also been missing Tulane, New Orleans, and all of my friends there terribly over the past week or so. I cannot explain it. I wake up and a different NOLA friend comes to mind each morning, and I wonder what they are doing and want to invite them to Bruff and to walks in Audubon Park to hear about their lives. It seems that I do not belong in New Orleans or in Chapel Hill. I exist in this tragically peculiar middle space in which I am certainly not caught up with friends at home, yet I have definitively moved away from New Orleans for at least the next two and a half years. I do not seem to understand what is going on in either place. Old friends in Chapel Hill throw around terms I do not know and mention events that I am unfamiliar with and reminisce about their freshman year experiences together and continue old traditions. They have done so many incredible things during their three semesters of college and are such accomplished students, and I cannot help but feel like all I have done is been sick. I want to try to catch up on all they have experienced, but I do not want to intrude on anything sacred, and it is almost impossible to try to figure out when I can ask questions and when I should just let everything be.
The happiest news of the week - meet our
German Shepherd / Husky puppy, Dante!

     Perhaps sacredness is at the root of all of this. Whenever I try to explain New Orleans or my friends there to my Chapel Hill friends, I get this pang of guilt that what I am doing is wrong, and so I give abbreviated and sugarcoated versions of events between long pauses that allow me time to decide how to speak in a way that does not drive that pang of guilt further in. There are some stories I just don't tell. Some of them are sad and some of them are hilarious and most of them involve combinations of emotions that you would never think could go together, but it feels wrong to disclose these moments to people who weren't there, because they feel so sacred. They were all moments that took place in one of the most frightening years of my life, and with people who could never be replicated by my inadequate descriptions of them.

    Obviously, I also want to avoid being the girl who goes around and tells everyone where she would rather be. None of us can stand that girl, myself included. I do not want my friends here to think that they pale in comparison to my friends in New Orleans, because that would be completely untrue. Sometimes I just want to ask them, "What if you had to leave everything behind? What if you were at a completely new school right now after loving your first year at UNC? What if you had to give up every single friend you made freshman year?" But hypothesizing about how one might feel is not the same as feeling it, and so these questions lack power.

    I wish I could tell the universe that being sick for my first three semesters of college so far has taught me many lessons and introduced me to phenomenal people, and that pending approval of this revelation the universe would grant me a chance to start college over without a body that is constantly betraying me. But this is not the way of the world. So I am going to keep being startled and suffocated and saddened by the pain I experience so frequently, and I am going to keep missing my friends in New Orleans, and despite all of these difficult circumstances I am going to keep going and keep trying new things and keep trying to strengthen old friendships and keep trying to be healthy. It is the least and most I can do.

Saturday, November 18, 2017

What. A. Semester.

      I've had a hard week. Actually, I've had a hard semester. Every time I see a new doctor or explain my situation to a new friend they express utter disbelief that I am still in school. I'm THAT girl.

      I have been running nightly fevers this week, which has been less than ideal but bearable when I am intentional about time management and getting all my work done prior to my inevitable rise in body temperature. Its predictability adds to the frustration, but I am trying to take everything slow and take deep breaths. On Thursday I made a visit to the Student Health Center because I was feeling terribly ill and missed both of my morning classes (very atypical of me), and the doctor I saw essentially insisted that I "listen to my body" by spending the day in bed. If I have to rest and cancel all of my plans today, I'm doing it with pets, I thought, and so my dad kindly picked me up and drove me home, where I slept for many of the daytime hours with my small dog curled up with me.

      As many of you know, I saw another new rheumatologist this past Monday. I am happy to report that the experience was excellent. After taking my history (which we both admitted was quite extensive) and performing a clinical exam, she looked me in the eyes and said, "I believe you. I don't know what's going on, but I believe you." I am so grateful that she said this. For the entirety of the #MysteryIllnessCrisisOfFall2017, not a single soul had said this to me, neither a doctor nor a friend. I did not realize how much I was longing to hear it until the words came out of her mouth, and for the first time in several months I felt like I could breathe. Intentionality is everything. This is likely to be a good patient-doctor match.

     The new rheumatologist and I laughed about what a mess I am together before talking through several different options for next steps. I requested a referral to physical therapy, where they will be helping me with inflammatory hip issues that have been bothering me over the past few months. We are starting me back on my Arava (leflunomide) and a biologic that I have not yet tried, Humira. If any of my arthritis/autoimmune friends have been on Humira and would be willing to share tips, it would be much appreciated! I hear it is excruciatingly painful but effective for many people. I will be doing the at-home syringe injections every two weeks.

      Between the fevers, the death of my dog, other painful symptoms, outside scenarios, and an overwhelming amount of academic assignments, I am low-key having a terrible two weeks even in the midst of the semester that is trying to destroy me, so if I have not responded to your email, message, or text, please know that I received it and that all of them have been so encouraging to me. Thank you for your kindness. I read every single message multiple times and cherish each one of them.

     My friend Alana has put up with my struggle so compassionately this week, so I would like to thank her for cheering me up, listening to my complaints without any trace of judgement, and making me laugh during my nighttime fevers while we "did homework" (read: hung out in the student center with our assignments open on our laptops). I am thankful for sweet friends with lots of love to offer and smiles to share.

     Even though I have been living with chronic pain for about seven years now, I still sometimes feel absolutely suffocated by the notion of never breaking free from the body that entangles me in the cruel stabs of invisible knives and silent agony of unrelenting aches. I am thankful for friends who make space for these worries of mine, and who acknowledge that they do not always dissipate with time, but rather fade in and out.

      In one of my classes this semester we have been talking about illness narratives, and about listening to people's own account of their health experiences. It has allowed me the opportunity to ask some people, "What is it like to live with [condition]?" In asking this question, I have been forced to confront the reality of how infrequently we take the time to fully soak in someone else's narrative rather than constructing our own. We are quick to notice the little things, like our friends having to call their doctors or getting injections or going to the hospital often, but we rarely step back and ask about the big picture. I would encourage you to ask someone that this week, if it feels appropriate and if it is a question you think your friend would be comfortable answering. You might be surprised by the response you receive or what you learn.

      I would like to thank my friends Marissa, Marisa, Laura, Annie, and Erica for helping me remain in my classes this semester by sharing their notes with me when I am absent from class and keeping me caught up on the material. This is a story for another post, but I almost withdrew from the semester due to my health. These fabulous friends encouraged me, supported me, and assisted me academically, even though I just met all of them this year. I am lucky to know such wonderful people.
   
      I want to end this post with the happy news that my arthritis twin Paula, who I met at the JA Conference in Indianapolis this summer and whose journey with juvenile arthritis has been absurdly similar to my own, is blogging now! You can check out her writing here. Paula escribe su blog en inglés y español. Yo recomiendo mucho que lo leas, especialmente si estás buscando para información sobre las enfermedades crónicas - es un gran recurso para las personas con y sin artritis y sus amigos. I am so excited to read your future posts, Paula!

      This semester will be over very soon, which is a good thing because I frankly don't know how much longer I could make it through. My dad and I are visiting New Orleans in between my last exam and my surgery, and I am SO excited!!!! I cannot wait to see all of my Tulane friends and visit St. Anna's, my NOLA church. I just have to make it a few more weeks, so if you have any excess strength or energy please send it my way and I promise to use it wisely. 

Monday, November 13, 2017

Life Lately

       Thank you all for your sweet messages, emails, hugs, and phone calls over the past week. I am feeling much better physically than I was a few weeks ago, but am still having some strange symptoms and am still undiagnosed. The #MysteryIllnessCrisisOfFall2017 drags on.

Bella & me last Monday
       My sweet German Shepherd, Bella, passed away on Wednesday. She was surrounded by love and the people she adores the most. My mom and I held her as she took her last breath. We have had Bella since I was in the first grade, so I cannot even remember a time without her. She has been with me for the entirety of my education, and on the hundreds of sick days I have had she has come over to me on the couch, rested her head in my lap, and looked up at me with striking brown eyes. Bella had severe arthritis, and I often felt as though she was the only one who fully understood the pain. Sometimes we would walk up the stairs together slowly, taking them one at a time, and then when we would get to the top we would look at each other and celebrate our win. She was fiercely loyal and amazingly gentle. There is no other dog like her. My family misses her terribly.

      This afternoon I am seeing a new rheumatologist for the first time, and to be honest I have lost some hope and am not expecting much from the appointment. I am so exhausted. I am scared of whatever happened to me so acutely over the past several weeks flaring up again, especially since I am no longer on any medications for my arthritis except for an NSAID. I am trying very hard not to give up. My only other upcoming appointments are with cardiology at the end of November, surgery in December, and ophthalmology and my old rheumatologist in January. I am feeling glad to have less appointments, but also frustrated because we really haven't gotten anywhere at all aside from ruling things out.
   
     I am super annoyed about how this semester has gone, because I really wanted it to be good and healthy and fun. I feel like my friends and professors are not seeing my best self, and I am not seeing my best self, and it is so irritating to have no control over my body and no diagnosis or treatment in place. Being sick in college, and in my late teens, when everyone else seems to be experiencing their peak of health, is immensely lonely. Sometimes when I am hanging out with "healthy" friends I find myself distracted with jealousy of the lack of thought they put into their health. They get up without feeling a pang of panic about how their ankles, knees, and hips will cooperate with their new position. They bite into their food without thinking about the pain it will cause in their jaw. It is hard for me to imagine not feeling constant physical pain.

     I think there is a world somewhere out there where Bella is running around on joints free from any pain, chasing tennis balls and befriending swans and cuddling with her toys. I think we all get to enter that world at some point. Sometimes I wonder if people think I am religious just because I am sick; are my beliefs just a coping mechanism? I don't think so. I think I genuinely believe all these things about a better place. But I also think that if you believe them just because you are hurting, that's okay too.We should all be a little gentler with each other. 

Saturday, October 28, 2017

Hard Times

      Hello friends.

      A lot has happened since Mortality Beach Day. Between visits with/referrals to rheumatology, pediatric rheumatology/immunology, oral/facial surgery, ENT, infectious disease, dermatology, pediatric cardiology, pediatric gastroenterology all in the past two months, I am feeling bounced around and exhausted. We seem to always go back to some sort of rheumatological problem, but we do not have a name or cause. These are hard times.

Shout out to my beautiful friend Spencer for this lovely post-operative gift!


      Sometimes I wish I could bring a scrapbook of my life with me to show each new doctor I see. I want to tell them that I once fell in love with the city of Krakow, that going to Target with my sister is my favorite thing, that twice I built gingerbread creations for a national competition, that I live for excessively long walks in Audubon Park. I want them to see me as a person worthy of being well. I want them to understand how far I am from my best state so they feel the urgency I feel in figuring this out and returning me to a healthier state.

      Perhaps the cruelest part of this entire thing is that the period before a diagnosis is the most challenging. It is when you need the most support, yet have no idea how to ask for it, because you don't even know what is wrong with you. All I can do is try to describe symptoms, abnormal tests, appointments, and procedures. Sometimes I feel like I am telling my friends just to remind myself that all of this is real, that it is happening, that I am not crazy, and then I feel annoyingly self-absorbed for talking about my own problems so much, and I feel like people must be pretty tired of hearing about my illness because I have been sick for literally the entirety of my college experience. The funny thing is that if someone told me that they were annoyed, I would be in complete agreement. I am so sick of this always being on my mind. I want to go back to Krakow and Target and gingerbread creations and Audubon Park.

An early morning upper endoscopy
that took place on Thursday.
     A few nights ago, one of my bizarre symptoms conveniently appeared while I was with my parents, and they were able to objectively feel with their hands and see with their eyes what was going on. And even though the symptom was uncomfortable, there is so much relief that comes with being seen. I have been thinking about this "being seen" concept and trying to apply it in my friendships, to make sure that people feel validated and real. I suspect it is a concept that can branch outside of the confines of illness, but then I also feel like perhaps I am making it much deeper than it needs to be.

     I am trying to stay at school and on campus as much as possible, because I desperately want to make friends and keep up with the friends I have, but it is sort of like when you have the flu and you just want to go home. Friends have been visiting and hanging out with me and watching "The Great British Baking Show" with me, which has helped immensely, but when I am alone I crave the presence of my mom and my cat, and I find it more difficult to distract myself from pain and discomfort in the quiet.

    Last night I went to see a show and hung out with friends, typical college things that I should definitely be capable of doing. My heart was so full. And then I got back to my dorm and was overcome by muscle spasms, lung tightness, and nausea. I fell down on the tile in the hallway, not hard but enough to embarrass me and strip me of some of my dignity, and I threw up in the bathroom, and when I used a breathing treatment, which I felt was necessary given my tight lungs and nausea, I found my heart racing and my body shaking. It was a defeating and humiliating night. I felt completely betrayed by my body. I felt embarrassed by my symptoms.

     Perhaps I am too hopeful about finding answers. Maybe we will never know what has caused this odd myriad of symptoms. I am admittedly quite daunted by the prospect of more appointments and referrals and tests. I feel frustrated that we have resorted to pain control, because it is a Band-Aid solution that is masking a problem rather than treating it. I am frustrated with myself, because I am so intimately close to the problem yet cannot identify it, and I wish I was feeling stronger and crying less. I wish I was better at advocating for myself, and at the same time I don't want to come across as a jerk or a difficult patient to the specialists I am sort of reliant upon at this point.

     These are hard times.

Saturday, October 14, 2017

Mortality Beach Day

     Last week, I admitted to a friend that I was actively coping with a constant urge to drive straight to the beach. I could not tell how much of my mental state was due to the medications I was on, how much was due to the health crisis I was experiencing, and how much was due to my personality, but I was sure that this was what I wanted. I had to get out. I spent several hours last week (no exaggeration here) looking up flights that left the next day. I thought the plane tickets to Paris were a reasonable price. The ones to Montreal were even better. It took all that I had in me not to purchase any. I wondered what would happen if I did. Would I text my parents while watching a French plane safety video and buckling my seatbelt, just to let them know that I would be spending some time in Paris? Would one of them follow me? Would I spend a week exploring France, with no agenda, leaving all of my usual commitments behind? Why was my health making me want to go instead of rest? Perhaps I just want to be reassured that the world is much bigger than autoimmune illnesses.

     When I confessed to my mom that I was just dying to walk barefoot on the sand, alongside the water, she became her usual practical self and promised me that we could go on Saturday. I like to think that she actually wanted to go and was not just trying to stop me from impulsively purchasing an international plane ticket, but either way, it worked out for me. "I've always wanted Bella to get to see the ocean," she said, laying sympathetic eyes on our slowly dying German Shepherd, who has bad arthritis and some degree of paralysis in her hind legs. Somehow Bella and I have ended up both looking into the future at the same time, unaware of the extent to which our bodies are breaking down. We struggle with our joints but we are both so happy, and day trips to the beach are enough to warm our hearts and make life worth it. I like to think we have a lot in common. Considering my circumstances and Bella's, I fondly named this mini-trip "Mortality Beach Day," and spent all week looking forward to breathing in salty air.

     October 12th (Thursday) was World Arthritis Day, and I was so touched by all of you who wore blue, posted to social media, and sent kind messages. It was so fun and such an honor to see all of my friends, with and without arthritis, posting about something that affects me in such a constant way. From the bottom of my heart, thank you! Overall, besides the stress of trying to figure out how in the world I am going to keep up with school given my pain levels, medications, and appointments, it was a lovely day, and I got to catch up with my best friend, have dinner with a new friend who I already love to pieces, and go on a walk with an old friend who is always willing to listen. I cried literally everywhere - outside of my English class, in my dorm room, and in our student union - but I have essentially given up on pretending to be strong. I am weak and sick and sappy. I am medicated and in pain. I am not going to waste energy holding back tears. There is no energy to waste.

     Unfortunately, my World Arthritis Day ended with a trip to the emergency room. We are still not sure exactly what is going on, but we are hanging in there until my pediatric rheumatology appointment on Tuesday. My whole life seems to be up in the air, and everyone is struggling to pin it down in their own way and from their own position. My friends don't know what to say, my doctors don't know what to say, and I don't know what to say. I am feeling afraid of everything, from walking by myself and potentially falling to upcoming surgeries to how I will hold down a job in the future. I am in a lot of pain. I feel unexpectedly confronted by the idea that my body is fragile, and that it will not last forever.

     I also feel very big picture, like I have zoomed out of my life and am thinking about all of the more important things, like who I have loved and how well I have loved them and who has loved me and the places I have been. I have seen Honolulu and Budapest, Rome and Juneau. These are things I have been thinking about every day, even while befriending surgery schedulers and worrying about little things like assignments and appointments and muscle spasms. The world is so, so big.




     Thankfully, I rested yesterday (after getting home from the emergency room around 5:30 on Friday morning) and so Mortality Beach Day was a go. We packed sandwiches and grapes and blackberries and our two dogs, and the six of us drove away from the hospital and home and school. We walked and splashed and sat and breathed. It was everything I needed. I thought I might be very emotional upon seeing the water, considering all that I have been through lately, but I did not feel overwhelmed, I just felt at peace.

     My sister Hannah and I spent lots of time taking pictures. I want to have plenty of pictures of Bella, because she is the best dog I have ever known, so I kept the camera on me constantly. When Hannah was taking pictures of me, she gently suggested that I pull my sweater up a bit, to cover the white lidocaine patch that is on my chest for 12 hours every day. She did not want me to look back at the pictures later and be disappointed that it was showing, especially since this trip was supposed to be an escape. I thought it was kind of her to make the suggestion.

    "I don't care if it shows," I replied softly, surprised by my own response. I hope when I look back on Mortality Beach Day I remember how horrible I felt (and feel). I hope I remember how scared I was (and am). I hope when Hannah's kids or my kids look back at this picture one day they ask, "What is that white thing?" so that I can tell them all about what a beautiful day it was, even with so much pain. I will tell them that sometimes it is possible to go from the ER to the beach in just a little over 24 hours, and I will tell them that life really sucks but it is also really lovely. I do not want to cut the pain out of the picture. I am enduring this illness, and I want people who see the photos to know that I do the things I do in spite of hurting, because that is way more honest and powerful than covering anything up. I am in a lot of pain today, and I went to the beach and dug my heels in wet, grey sand and hugged people and pets that I love very much. Today was a success.

     I wish I had more concrete answers to give or solidified medical details to share, but I am limited both in what I am sure about and in what I am willing to say. Everyone has shown me so much love and support as I have struggled. Professors, former teachers, Tulane friends, UNC friends, classmates, Governor's School friends, and high school friends have all reached out in ways I never anticipated.

     I would like to specifically thank Amelia, Faith, and Kayla for the unreal kindness they have shown me this week. There are some moments so broken that they become holy. There are shared spaces of suffering that cannot be recreated in words. I am thankful for friends who are willing to stick by an eighteen-year-old whose body is destroying itself, because I am certainly not the picture of fun and cannot help but feel like I am disappointing everyone. "I am so proud of you," one of my friends told me this week after I called her. I was sobbing and terrified after ten vials of blood were drawn from me in one sitting and diseases that scared me were named aloud by a specialist. She complimented my decision to reach out for support, and I was totally shocked, because I could not believe that someone could see anything positive in me in that moment. How is it possible that I know such wonderful people?

      Finally, thank you to my incredible parents, who have done absolutely everything for me over the past couple of weeks, from helping me arrange my academics to taking me to the beach to driving me to the ER at 2 in the morning. I never have to wonder if there will be someone holding my hand or speaking up for me. There always is. 

    Isn't that what we all want?

Monday, October 2, 2017

Outside

       I know that I am supposed to be resting.

       My ribs scream out in pain, reminding me to ice them and to lay down and to stop moving. The muscles in my neck make me involuntarily squeeze my eyes shut every once in awhile. All of the forces in my body try to push me closer and closer to my bed even when I am ready to be far far from it.

      I tried to do a good job today. I went back to my room in the early afternoon and promised myself I would rest. I composed a five paragraph email to a professor explaining why I needed to take his midterm on a different day. Chronic illness is exhausting.

      All in all though, I think I have to count today as a good day. I called the office of the doctor who specializes in exactly what my body needs a specialist for (as mentioned in my last post), and was shocked to hear that the earliest appointment was in January. This was much earlier than I had anticipated; I had mentally prepared myself to hear "March" and decided that I would only freak out if it was later than that.

      I eagerly accepted the January appointment, and then inquired about a cancellation waiting list. The very kind nurse on the other end of the line, realizing that I was trying to be seen as quickly as possible, did some thorough searching and was able to find me an appointment... two weeks from now.

     If you know anything about pediatric rheumatology, you know that a new patient appointment in two weeks is an absolute miracle. I almost cried tears of joy and disbelief, and believe me, this was a much different on-the-verge-of-tears experience than the many I have been having over the past month. I thanked the nurse profusely, trying my very best to convey my sincerity. I am hopeful that this new pediatric rheumatologist will be able to help us figure out the root cause of the disaster that is my body.

    Four hours into my resting mission, I was at my wits end, which I suppose is what a lack of human interaction will do to a girl. I walked to buy a banana, hoping that seeing other people would help me out. My ribs screamed at me the entire time. I pretended like I couldn't hear them.
CVS, if you are reading this and would like to send
me more ice packs, please please please do I will
be forever grateful.

     At some point a girl has got to live a little (and I really mean a little). I pulled the ice pack I put on my chest out of the freezer (I have two of the same one, so they are in constant rotation), strapped it on, grabbed my backpack, and headed outside, to a picnic table area near my dorm. Thankfully, it is somewhat secluded so people are not staring at me, but the truth is that my ribs are hurting badly enough that I am seriously considering bringing these ice packs with me to class, because my focus would probably be much better if I was not feeling like I was having a heart attack while trying to learn about literature and practicing Spanish with my classmates.

     I have been writing papers and pouring into readings with this ice pack strapped around me, grateful to be somewhere other than my room, grateful to watch the light at the intersection change from green to yellow to red, grateful to be able to watch people pass by, grateful for the crickets and for the sound of people locking their cars and for the perfect temperature. Sometimes I stop and think about all of the appointments I have coming up. I think about surgeons who will be sticking instruments into my face and needles into my jaw. I imagine tubes being stuck down my very sore throat. Sometimes I stop and let my face sink into my hands, overwhelmed by the pain in my chest and back. I know laying down would be less painful, but there is something healing about ordinary sounds that remind a person that the world is still turning and twisting, and I certainly need that today.

     The current medication cocktail that I am on is resulting in some confusion and disorientation and anxiety. I have been assured that this is normal, but I cannot help but feel a bit out of control. It is not severe by any means, but it is frustrating and tiring. It is difficult to stay calm when your medications and your pain are working in tandem against you. I know it is not really me feeling so shaky and panicky, but it can be hard to stay grounded.

      The sky is dark now. It is absolutely beautiful. The dark and beauty have always coexisted, and I believe they always will.

Saturday, September 30, 2017

The Comment I Couldn't Believe

      I have debated whether or not to publish this post, and decided to do so because it details an experience that I think is probably shared by other chronically ill patients. This post mentions a comment that was made regarding suicide. Please know that if this topic is particularly upsetting or triggering to you, I completely support your decision to skip this post.

      I have been having trouble making a speech in one of my classes, part of a required assignment. My speech is about juvenile arthritis. Ironically, because of complications stemming out of this disease and out of acute illnesses I have been facing, my ability to speak right now is very on-and-off, and when I can speak my voice sounds terrible and I have no ability to project.

     "How long has your voice been like that?" one of my classmates asked me somewhat mockingly as we participated in a small group activity together. I had not previously spoken to this classmate and still do not know his name. I had just returned from the rheumatologist to attend this class, and given my extremely high pain level at the time, I had little patience for prying questions from rude boys.

     "It's been on-and-off for about three weeks," I responded honestly, doing my very best to get the words out. Several sets of eyes were staring at me, awaiting my response. I had missed both days of this class the week prior, so people knew something was up. My voice is weak, and sounds strange, but I am still participating as much as I can. My classmate leaned back in his chair, smiling in the least friendly way you can imagine. What came next absolutely shocked me. He looked me directly in the eyes.

     "I would kill myself if I were you."

     There are so many responses that I have mustered up in hindsight, but in the moment all I did was stare. I did not respond at all, and had no idea what to say. I could not believe he said that to me, and even more than that, I could not believe that one human being would say that to another. Perhaps we should all be required to take an introductory class about compassion rather than English. I stared blankly at him, without even trying to form words, wondering if he realized how insensitive he had just been. I was absolutely appalled. I could not tell if I was angry, upset, or apathetic. He offered no apology. He turned to his computer and pulled up the webpage for our assignment.

     I pondered this interaction for the rest of the class. I texted a friend to tell her what had happened, mostly just because I could not believe it and needed to type it out. I have experienced a lot of rude comments and insensitive remarks from classmates - I was diagnosed in middle school, after all. But no one has ever said this to me before, and frankly I did not think anyone ever would. I dedicate way more space on my blog to positive experiences with friends and even with strangers than I do to negative experiences, and I want to be clear that my experiences overall are disproportionately positive. In general, people are very kind and understanding, much more so than I think an outsider might expect. Still, there was something about this comment that rendered me unable to focus for the rest of the class period. I could not tell if it was his words or my medications making me nauseous. I could not think of why he might say something like that.

     The class that this happened in is very small, and my professor knew that I was in a lot of pain, because I had explained to her that I was unable to give my speech and frankly it has not been super difficult to read my pain levels lately, because I just feel absolutely miserable and can barely go two minutes without visibly wincing from intensified pain somewhere in my body. She asked our small group a question and all of the members of the group looked at me to answer (since they had not paid any attention whatsoever to our assignment), and my professor, realizing what was happening, said, "I need someone to answer who didn't write up on the board" to strategically work me out of the running for this response. She was quick-thinking and respectful, two of my favorite qualities. I looked at her and mouthed "thank you" without even consciously thinking about it. She offered a slight, knowing smile and awaited answers from the boys in my group.

     After class, I went up to her to apologize for being unable to deliver my speech for the fourth class in a row. I offered to bring her my health documentation. Refusing medical proof, she asked, "How about you just keep breathing?"

     I am unsure whether or not she heard what the guy in my group so insensitively told me, but it was a shattering contrast, possibly the only affirming way to leave the classroom. I will admit that over the past few days I have been thinking much more of the guy's comment than of my professor's. I wish that I had the ability to focus only on what is uplifting, but his comment caused my heart to sink, not just for myself but for all people living with chronic pain and chronic illnesses.

      All my classmate knows is that my voice was on-and-off for three weeks. He has no idea about the juvenile arthritis, the severe muscle pain, the costochondritis, the fevers, the lung inflammation, the upcoming jaw procedure, the upcoming sinus surgery, the semester I spent with strep throat, or the semester I spent with a combination of severe asthma, allergies, and sinusitis. He has no idea that I went to the doctor four out of the past five days and that I am now just as well-known at the UNC campus health center as I was at Tulane's. He has no idea that I am supposed to be wearing a protective mask everywhere and that I am still at risk for more infections. He has no idea that yesterday morning I left all of my dignity in the voicemail box of the only doctor in North Carolina and any of its bordering states that specializes in exactly what I need. He has no idea that I have been prescribed 21 more days of antibiotics and 14 more days of oral prednisone, and that we have stopped checking bloodwork because we know it is going to be bad. If he knew about all of that, what would his response be? If three weeks of misery made my life unworthy of continuation in his eyes, what would he think about a year of acute illnesses, or about seven years of a chronic illness?

     I went back to my dorm room after the class and laid between two cold compresses, one on my chest (I have been diagnosed with costochondritis this week and it is unbelievably painful), and one on my back and neck, where my muscles have been tight and inflamed for reasons that are not totally clear. I debated what to do next. I needed to be productive, to do readings and send emails and type out assignments. I needed to respond to text messages and send out cancellations for all of the activities my illness is causing me to miss. I needed to schedule times for my friends to hang out in my dorm with me, because I refuse to be a dorm room shut-in even if I need to be laying down with ice packs a lot of the time. My mind was stuck on the insensitive comment. I did not know what to do next.

     How about you just keep breathing? I asked myself. And so I did.

Tuesday, September 26, 2017

Reaching Out

     It seems as though I am constantly having to remind myself that it is okay to reach out to people and ask for help. I worry about taking up my friends' time, about them thinking I am overreacting, about turning the focus to me when really I would much rather hear about their lives, their laughter, and their struggles.

     I also feel like possibly the luckiest person in the world, because I barely have to reach out. This morning I woke up to several sweet messages wishing me well as I continue fighting a mystery illness and encouraging me even though my body has reached its breaking point with exhaustion.

     This morning, one of my classmates in my favorite English course asked me how I was doing. I swerved around in my chair to look her in the eye. The muscles in my neck were too stiff and painful this morning to flip my head around. "Okay," I said, and before I could ask her the same question she responded.

    "Just okay?"

     She asked it with so much authenticity that it would have been a cardinal sin to lie. "Just okay," I said with a tight smile, and when she inquired further I vaguely admitted that "medical problems" were the underlying issue (this was definitely not the time to be like, "I'm on Day 18 of antibiotics!"). Without missing a beat, she offered all her help and entered her number into my phone. It was 7:55 in the morning, and class had not even started yet, and already I had experienced so much compassion from several different people. Arthritis sucks, and it will always suck. But not many people get to experience so much kindness within 55 minutes of waking up, and not many people get to feel so loved and so supported, and so even though my body is crumbling I feel as though there is nothing to complain about.

Just including this picture because my sister Hannah is the best, and
because it helps to remember all of the happy, comparatively healthy times. 

     My favorite phlebotomist declared that he is now a part of my "fan club," along with my mom who was there with me, and I could not help but think of all the people who are cheering me on, and I went back for labs with a tired soul but a warm heart. I certainly do not deserve any sort of fan club. Every day I am absolutely floored by the kindness of the people around me. I have no idea how I ended up surrounded by so many wonderful friends. It is a privilege to experience so much grace.

     Reaching out to people is an important skill to have, and one that I am learning. But right now, I am feeling very grateful to have friends who do not require me to reach out, but instead swarm in with brave intentions and ears to listen and shoulders to cry on. Friends who randomly call and ask, "How has today been?" or "How angry are we at your joints right now?" Friends who bring soup and give long hugs. Friends who include me in their shenanigans and invite me places, reminding me that at the end of the day I am still a college student.

     I am better at reaching out now than I was a few years ago, and I have reached out a couple of times recently. But reaching out is exhausting, and my body has no energy. I am so overwhelmed with gratitude for all of you who have done the reaching out for me over the past few days. Thank you for reminding me that there are lovely things and lovely people in this world.

Wednesday, September 20, 2017

Trying to Recover

     So here goes a long story with way too many details. Sometimes I feel like this blog could be titled, "Times I Cried," but if there is one thing we should be using the Internet for it is empathy, or at least that is what I am telling myself to convince myself that it is okay to write down and publish this.

Shout out to my parents for taking care of me tonight!
      I went to bed on Saturday not feeling well at all, and by Sunday my teeth were chattering as I piled myself under 3 blankets and curled up on the couch next to my mom, feeling unbelievably cold. My fever rose up to about 102, which is quite high for an immunosuppressed girl who usually hangs out somewhere between 96-97.

      On Monday, I went in with my mom to work because I had a morning appointment with an oral surgeon. Even though I was feeling absolutely awful (read: sore throat, congestion, head and neck hurting, nausea, fever, body aches) I was not about to reschedule this appointment.

      I have been issued some repeated warnings throughout the past year about the rheumatoid arthritis and damage in my jaw. When I saw an ENT in New Orleans for an unrelated problem, he pressed his hands on the sides of my face and asked me to open my jaw and said, "If I wasn't looking at you, I would think you were 90 years old. This sounds like the jaw of an elderly person." Ya girl was 73 years away from 90 at the time, so this was very concerning, but there were so many crazy health circumstances stemming from the Strep Throat Crisis of Fall 2016 and the Allergy/Asthma/Sinusitis Crisis of Spring 2017 that I had to make choices about which issues to aggressively address. The ENT had me put my hands on the sides of his face while he opened and closed his jaw so that I could hear and feel the difference and compare it to my own. "You have a nice jaw," I said sadly, and we both laughed even though it was not funny.

     I informed my home rheumatologist of the ENT's comments over spring break, and he ordered an MRI that showed torn cartilage and eroded bone on both sides, as well as a tear on one of the discs. At the JA Conference in August, I learned that the pain of TMJ arthritis is often not as severe as the damage being done, and this certainly rung true for me. I have pain in my jaw, but I did not think it was as damaging as the scans showed.

     When I went to see my dentist/orthodontist this summer for a routine cleaning, I was surprised to hear that seeing an oral surgeon needed to be a priority, and cried as I laid in the chair, confessing to my orthodontist, "I'm just overwhelmed," with the sort of honesty that only comes when it is completely unplanned. The idea of surgery felt crushing and unexpected, and so I did what any responsible person would do in this situation: I sobbed to my parents over the phone, drove to my friend Faith's house, and convinced her to watch "Christian Mingle" on Netflix with me. The day is a bit blurry (literally, from my tears) looking back, but I think at some point I fell asleep on Faith's couch from emotional exhaustion. My dad took the next day off to go with me to an appointment, and afterward we went out to eat Lebanese food for lunch and then we went to see "The Big Sick" at a movie theater with the hope of cheering me up and distracting me from what we knew would be a scary journey ahead with my jaw. We did not realize that this movie would be about a young woman with autoimmune arthritis, but hey, we did our best.

      At the oral surgery appointment, we decided to do some bilateral flushing out of debris (sounds lovely, I know) and intra-articular (straight into the joint) steroid injections, a procedure which will be done under general anesthesia on the first morning of fall break. If you are looking for fun fall break ideas and would like to watch a movie and drink smoothies with me while I recover, please hit me up. I tend to be very emotional after anesthesia/when on painkillers, so if you ever need someone to cry while watching "America's Next Top Model" with you, I'm your girl.

     So anyways, in the car on Monday morning we realized that I high-key needed to see a primary care doctor because I was so weak and completely not myself. Thankfully, we were able to get in quickly, but we had to leave before I could have my bloodwork done to go to the oral surgeon appointment (feeling #blessed that campus health is connected to UNC Hospitals), where I couldn't be examined because of my acute illness. No one really wants to get near your jaw when all of your lymph nodes are enormous and you're wearing a medical mask.

     I went straight back over the bridge to student health, where I waited for my blood to be drawn. Normally, I try to make friends, be cheery, smile at people, etc. when I am in waiting rooms, but let me assure you that yesterday I was doing the impossible: making that waiting area in the hallway an even bleaker place to be. I was too weak to even sit up, so I was sort of halfway laying down in this chair, with my heavy head resting on my hand and a white disposable mask covering the majority of my face (we switched them out so I could have jaw x-rays taken). The phlebotomist kept assuring me that they would be ready for me soon, and when I was finally called back he immediately leaned the chair all the way back because he could tell I was not feeling well and certainly did not need me passing out.
    After the blood draw, I immediately returned to student health, and this is the point of the story where I really started to lose my mind. The mono test was negative (thank the Lord, because I have no idea how I would have dealt with mono fatigue and JRA fatigue together), my white blood cell counts were all messed up, and we knew there was a sinus infection but we were unsure of what else was going on. More blood tests were ordered, as well as chest x-rays to rule out pneumonia. The word "inpatient" sent me into a spiral of tears, and when my doctor and I returned to my dad in the waiting room (my parents swapped on/off throughout the day) my white paper face mask was damp. The idea of being admitted is frankly very frightening when literally all you are trying to do is go to class and hang out with your friends, but luckily I was allowed to go home. This is the side of juvenile arthritis that it seems like no one outside of the disease understands: the severity, the fear, the pain. I have been swimming in this ocean for a while now, but the currents are still just as unforgiving.

    The blood tests ordered were to test for an infection in my bloodstream, which, as you can guess, is not an ideal situation. It turns out that the blood draw process is a little bit different when you are testing for sepsis. Instead of an alcohol swab, they have to use the orange antiseptic that is used for surgical procedures to clean the area, and they have to draw from two different locations, because "blood circulates" (that is the elaborate explanation I was given by my second phlebotomist of the day). After having the chest x-rays done and putting my name in again in the labs area, I was feeling very nervous. I had already had blood drawn that day from my right arm, where my only good vein is. This right arm vein is reliable, easy to find, and generally easy to puncture. I love it, phlebotomists love it, and phlebotomists love that I point it out for them. Overall, this vein and I have a great relationship.

    I assumed that the first of the next two locations would be my left arm, but it was the second of these locations that was causing me stress. I absolutely hate needles going into the backs of my hands (when I had my tonsillectomy in December I insisted that they put the IV in the good vein on my right arm), and I wasn't sure where else they might try. I tried to imagine all of the veins in which they might stick a needle, and there wasn't one place that sounded particularly comfortable.

    When I was called back, the phlebotomist offered to use the same puncture site as my blood draw from earlier that day as one of the two locations. To be honest, I had no idea if this was a good idea, but she suggested it and it did not involve some strange vein in my foot or stomach or anything so I was all for it. Plus, at this point I had realized how serious the infection was and was determined to get some answers, and I was already crying so I basically had nothing to lose. I was so sick, and all I wanted to do was go home.

     She scrubbed the orange antiseptic on my arms and promised me that it would wash off, although I still have rings of orange around my inner elbows today even after the most vigorous shower scrubbing my weak body could manage, so I will have to get back to you all on the validity of this claim. She stuck me twice, which unfortunately included one stick in which I involuntarily flinched so she had to move the needle around in my arm to search for the vein, and my blood went into some weird containers that already contained some other liquids. I finally left the student health center/hospital after almost five hours, equipped with instructions to rest, drink lots of liquids, take a strong new antibiotic, and drive straight to the ER if anything got any worse.

Antibiotics 2.0
    Luckily, I think I am on the mend, but it has been a bit up-and-down as far as my symptoms, and I am still in a lot of pain and feeling extremely weak. We are still waiting on some of the bloodwork to come back, but we are treating in the meantime. My parents have been very accommodating and helpful, and I am lucky to be in such good hands. When my sister Hannah came home on Monday and asked me for a rap I used to memorize the amendments to the Constitution, I joked in a painful whisper, "I would help, but I might be septic." Yesterday my mom stayed home with me and we watched "The Sound of Music," which I am convinced has more healing properties than antibiotics. My dad drove me into school today, and I was able to go to my two Wednesday classes, which was a relief. I was planning on staying the night in the dorm, but after being on campus for six hours I realized that I needed to come home and try my best to continue recovering.

    In the two-hour lunch gap between my classes today, I went back to my dorm room and laid down on my bed, covered by my favorite white blanket. I was planning on reading or going through email on my phone, but instead I just laid down and set an alarm. I was sleepy but couldn't fall asleep. I thought about what a social worker and patient at the JA Conference taught the young adult group, about feeling the pain instead of trying to block it out all of the time. And so I felt it, in my ankles and my knees and my hips and my wrists and my throat and my jaw and my neck and my head. I felt partially dead, like I was only half as alive as the people whose footsteps I heard in the hallway.

    I am trying my best to recover. I don't know why it is so hard, or why my body can't just fight better. I still see all of the beauty in the world and am not feeling particularly sad, just frightened and disconnected from a campus that I am just now starting to call home. I wonder when this infection will be gone. I can't believe that I am on my thirteenth day of antibiotics and still have seven more days to go. Today I found myself caught up considering what my senior year self would think if she saw me. She would probably be frightened. My eyes are a bit sunken in and my lymph nodes are all swollen and I look sort of washed out. My whole body hurts and I do not feel like a college student, but rather like someone who is in a world none of my college friends have had a glimpse of, where the phone calls I receive are from nurses and I check my patient portal like it's Twitter.

     I don't have any particular desire to have kids in the future, but if I do, I will tell them these stories of being sick in college. I will tell them how hard it was and how nice people are and how many tears I cried in front of medical professionals and family members and even strangers. I will tell them that even if they are passed out in the car with gauze bandaged around both arms and a wrist brace and a medical mask, they can still be strong and tough and fierce. I will tell them to compliment their phlebotomists, even if the pokes hurt, because they don't get nearly enough compliments. I will tell them to imagine themselves twirling in the Alps one day, having an unapologetic Julie Andrews moment, when their world seems to be disintegrating. I can feel myself growing wiser, in the strangest of ways, yet this feeling has come married with an unwanted awareness of my own mortality, and a deep understanding of how fragile our bodies really are.

     Mostly, I just miss my friends, in the simplest of ways. I want to hear about their days and hang out with them and laugh with them. I live so close to campus but I feel like I am falling behind in making connections, considering that I have to cancel every other commitment due to an infection. When I am around them I feel quiet and limited, because I don't know how to explain how broken I have been these past few days, or if that is even a narrative they are interested in hearing in its entirety. Juvenile arthritis is a cruel disease, painful in every sense of the word.

    I am lucky to have people to miss.