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


       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.