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.

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