Saturday, March 18, 2017

Flying Home Early

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, March 7, 2017

The Bare Necessities

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, March 1, 2017

The Last Pain-Free Day

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

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

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

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

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

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

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

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

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

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

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