Saturday, February 27, 2016

A Scheduling Rule of Thumb

     I am the type of person who loves to be busy. I like it when my planner is packed full of items that must be done within a limited time period. I love fast-paced activities and would hate working in a library or bookstore. I am not a procrastinator, but I love rushing to prepare a bunch of things at once before having people over, or being involved in mass food production, or hopping in my car to attend several meetings in the span of only a few hours. I take a lot of time to reflect as well, but I think I enjoy being busy because it allows me to accomplish more concrete goals and clears my mind. I always feel like there are so many things that need to be done - how could there never be something to do?


     Sometimes when I am flaring, I feel as if all of my energy is being funneled into my immune system, to fuel the epic biological attack against my joints. On particularly bad days, even the 7 hours I spend at school intimidate me, and the thought of being productive afterward is laughable. When I first developed arthritis, I found my time cut short. While my friends were hanging out at the mall, I was stubbornly arguing with my physical therapist at the children's hospital. Physical therapy was my worst nightmare in middle school. I was scheduled for appointments multiple times a week with up to three different types of physical therapists, I thought all of them despised me (I still think there is validity to that), and the process of regaining my mobility was intensely painful, although my refusal to tell them when it hurt certainly did not help the situation. In the midst of all of these appointments, I found myself scrambling to maintain relationships with my friends, attend church functions, and participate in my community.

     Nowadays, I find that my greatest scheduling danger is trying to pack too much into one day. I adore activity, and I think this stems partially from an increased appreciation for my health. I have also accepted the fact that I have to get things done even when I am sick. If I gave myself the day off every time I felt poorly, I would lose out on life. If I am not going to feel well either way, I might as well put in my best effort and get things done.

     Over the past two years, I have been focused on finding a balance. I am finding myself especially aware of the need for balance now that I am in the final stretch of my senior year; most of my friends will be geographically and academically dispersed by August, and I want to enjoy these last few months as much as possible. On the weekends I want to go out and spend time with my friends, even if I am tired and would rather sleep, because enjoying their company and learning from their brilliance will not always be an option. I want to solidify everything with my closest companions, so that we can remain friends from a distance, and it seems as though there is simply no time to be sick. Even one day spent at home by myself with a heating pad seems like an enormous loss.

     To counteract my desire to create a packed schedule for myself, I have created a rule of thumb: I will always have time to bring a bowl of soup to a sick friend. It sounds a little odd and maybe a bit too specific, but it makes sense in my mind. To me, it means that I will always have time to check in with someone who is not feeling well, to offer my help, and to follow through with that if I feel like the friend really needs it. Even my self-designed rule of thumb seems intimately intertwined with my own medical experiences, since I understand the value of loving someone in sickness and in health, but I think it is a concept that could potentially work for "healthy" people as well. There is always someone who could use a bowl of soup, or a buddy to watch a trashy Netflix show with, or a shoulder to cry on. Every day I remind myself to make time for these important gestures.

     The truth is, if I am too busy to lend a hand or an ear to a friend, then I am just too busy. Part of being involved in my community and part of changing the world is letting people know how much you love them. Maybe I am just being an overly sentimental and annoyingly reflective high school senior, but there simply is no time. You have to let people know that you appreciate them now, because you never know when your last chance to tell them that will be. You have to take all of the moments, not just the healthy or fun ones, and wrap them up in a way that changes you instead of in a way that comforts you. Having fun is important, but it is not nearly as formative as learning from people's pain.

     I cannot fight for the rights of people living with chronic illnesses and demand that they receive care if I do not allow myself the time to directly extend that compassion. It is hypocritical to be so busy with the Service Club that I cannot help a friend with their homework. Writing college essays about women's rights would be pointless if I did not have the time to swing by my women teachers' classrooms after school and ask them about their own experiences living in a world with such vast and prevalent gender inequality. How can I pursue what I consider to be a compassionate career if I am not obsessed with living a compassionate lifestyle?

     This sense of balance is one that I have improved upon in recent months and years, and I very much intend on committing to it throughout college. I have not decided on a school yet, but I am planning on being involved in a rigorous academic program and dedicating a substantial amount of time and energy to a few impactful extracurriculars. But I have never been impressed by people who work so laboriously that they do not have time to grab a cup of coffee or sleep for more than 6 hours. That type of success does not appeal to me. I will always lead a busy lifestyle, but I refuse to sacrifice my ability to love someone for the sake of crossing things off of a checklist.

      We only have so many bones, friends, and we don't quite know how long they will be good for. Let's use them lovingly.

Friday, February 19, 2016

Wheelchair Etiquette

      My recent use of my wheelchair at school has conveniently reminded me of the need for direct conversations on wheelchair etiquette to take place. I hope you find this list simple and helpful! Questions are welcome.

1. Hold Doors
     This is the simplest thing and the thing people seem to be the best at, so I put it first. Collectively give yourselves pats on the back for being decent human beings.

2. Accept Short Answers 
     I think it's okay to ask someone what is wrong or what happened, though many people in the chronic illness community would argue me on that, but if the person using a wheelchair gives a short response just go with it. Don't ask any more questions. Before you ask, think: Do I care? Or am I just being nosy?

3. Ask Before You Push
     Pushing someone's wheelchair can actually be very helpful and a real lifesaver, especially for someone like me who has arthritis in my upper extremities as well. But you have to ask. One time during my sophomore year someone who didn't normally push my wheelchair came up and started wheeling me around and I screamed. The truth is, it is frightening, and I, like any other human being using a wheelchair, want to have control over where my body is and when. Pushing is often very helpful, just be sure to ask first and don't take it personally if your offer is refused.

4. Don't Lean on the Wheelchair
     If you are standing near someone's wheelchair, don't lean on it. That is an invasion of personal space and it is really uncomfortable.

5. Don't Avoid the Word "Walked"
     This one makes me laugh because it is just so painfully awkward. If I am using my wheelchair someone will say something like, "So then Rachel walked over, and we started talking about cats..." Then, in a moment of instantaneous realization, their face turns artificial-cherry-red and they very apologetically say something like, "I mean, rolled. Or, wheeled..." and their voice trails off into an abyss of regret. Saying "walked" is okay, because the point of your sentence is usually that I got from Point A to Point B, not that I physically moved my legs back and forth in a repetitive manner. It's really okay to say "walked." I promise.

     All in all, I think it is pretty simple, but I am also sympathetic to the fact that most people are genuinely trying to be as kind and sensitive as possible. Remember, you are allowed to mess up, and if you break one of these unofficial rules it is not the end of the world. No one is perfect.

Sunday, February 7, 2016

Random Doses on Random Days

      Before my arthritis, I was quite the athlete. I was an active lacrosse player, horseback rider, and runner. I was planning on playing tennis in middle school. I completed 5K races and bounced around with all of my friends. Being stripped of those abilities was humbling and hard. Although it has been about five years since my diagnosis, I still very much miss doing those things, and on the days when I am flaring badly the wound still feels fresh.

      I am trying to be smart about this running thing that I am currently doing, so I have set limits for myself, limits that are based on things I have read online and conversations with my mother, because I don't have a physical therapist right now and I haven't been in to see my rheumatologist recently. I know that even if I want to go above 2 miles I should give it a little bit of time, and my hips, knees, and ankles have certainly been confirming this gradual pace. After five years of dealing with this condition, I can confidently distinguish between muscle pain and joint pain, and 95% of what I am feeling when I run and afterward is joint pain. It it frustrating, because I know that I am strong enough to run more, but I must remember that my joints cannot always keep up with the rest of my body, and so I have to work with it and appreciate the situation for what it is.

Congratulations to Emily for
committing to UNC-Chapel Hill!
This girl is going places.
     My mother is an avid runner, having completed both half and full marathons in the past, so she has been very supportive of my running and has given me valuable advice. Additionally, my friend Emily ran with me a few weeks ago, although we ended up walking most of the way because my knees and hips were not having it. I had already run twice that week, including once the day before, and my arthritis deemed this pace unacceptable and demonstrated its disapproval by giving me full knees and a painful step. Unsurprisingly, I was disappointed by my inability to run more, and I was afraid that Emily was disappointed in me as well. She is a fantastic runner and a skilled athlete, and I am not even in remission (yet). As I was attempting to find the right words to say and the appropriate apologies to make for my incompetent body, Emily gently but assertively offered words of encouragement and even promised that we would continue running together, no matter how slowly I needed to go or how much I needed to walk. I confessed to her how frustrated I was with myself; I used to be such a good runner, and now I see myself struggling to pick up an ability that I once excelled in. I won the fastest time for a running contest in my fifth grade physical education class, and while this achievement was and is pretty insignificant, I remember it because it was the last award I received for my athletic abilities before my immune system sent me on a downward spiral. Emily spent a considerable amount of time, conversation, and brain power helping me to think through the best and healthiest way to get back into running. Most amazingly, Emily made me feel proud of myself for what I could do instead of disappointed with the many things I could not do. Upon further thought, two years ago she was kindly pushing my wheelchair from my chorus class to my AP Government class, and now we are going on runs/walks together. Emily is right - that is progress! I am excited to continue running and to go hiking sometime in the next few weeks.

      When I told Emily that my rheumatologist might give me some running rules at my next appointment, which is in mid-February, she laughingly but very seriously offered to help me break those rules enough to make me feel in control of my life but not so much as to induce a flare. As always, I am thankful for friends who offer their support authentically and compassionately. I appreciate sarcasm and use it frequently, but I also think there is a lot to be said for conversations that are honest and genuine, and I value people who know when and where to draw the line. Sometimes I hunger for something concrete in a world that seems full of ambiguity, and Emily managed to be realistic, optimistic, and understanding all at the same time.

    I have taken a recent hiatus from running, because I have been participating in an annual, district-wide school show choir performance that takes place in my county. It has been a lot of fun, but as I detailed in my last blog entry, the post-rehearsal days caused me a lot of joint pain and illness. We finally had the show yesterday, and while I enjoyed it very much I am glad that it is over. When I got home last night, I began my ritual of seeking out the random bruises that appeared on me during the course of the day and assessing the state of my joints.

      Last year during this show, the high schoolers had a big number where we all ran on stage and then did a lot of physically intense choreography. Obviously, I want to be treated like every other student there, so I did not tell the choreographer about my health. He placed me at the front of one of the lines, meaning that I would run onstage first, all the way to the other end, and my speed would be crucial to the timing of the song. Everything went fine in rehearsal aside from the normal pain caused by running, but when I ran across the stage during the actual show something felt incredibly wrong with my ankle. I am shocked and grateful that I did not collapse, but I was keenly aware something was very wrong. I knew it was arthritis related, but the show must go on, and so I smiled through clenched teeth and did all of the choreography as I normally would have. I maintained my composure, even though I was frightened by the prospect of knowing that I could fall and find myself unable to stand back up at any moment. When the song finished and I struck the final pose, I was proud of myself, but extremely startled and shaken up by the entire situation.

     As soon as I returned to my school's designated dressing room, I removed my character shoe and found myself in tears, gently trying to coax my ankle back to comfort. Everyone was concerned and my friends inquired about what was wrong, but I tried futilely to explain that it was more the fear than the pain that had me all worked up. I was glad when the entire show was finished that night, and I was also starving, so my parents took me and my sister to Chipotle to celebrate the performance.

     So there I was, in Chipotle, at 9:30 p.m., in my flashy, red show choir dress, with full stage makeup, slightly ripped pantyhose, and beige character shoes, standing behind a tall man with a clerical collar who was also waiting in line to use the restroom. I realized that I looked like a walking disaster, but my curiosity about religion and specifically about various Christian denominations got the best of me and I timidly asked the man if he was a priest and where he worked. I am 100% sure that this guy thought I was absolutely crazy. He answered my questions succinctly and dismissively, talking in brief, broad sentences and not even revealing which church he worked at. As much as I wanted to know, I could not blame him, because I have to admit that his visual assumption that I was a train wreck was completely correct. We did not have a long conversation, because as soon as the restroom opened up, that priest dove in without even nodding his head toward me. Looking back on it, the situation was hilarious and embarrassing, and I get a good laugh thinking about how uncomfortable he felt and how out of place I was.

      Even though it sometimes makes for moments of disappointment or awkwardness or both, I am going to keep running and hiking and dancing and singing, because those are things I enjoy doing and I do not want to take my ability to do those things for granted, even if that ability is only granted to me in random doses on random days.

Wednesday, February 3, 2016

A Tale of Two Days

       My disaster of a Tuesday started when I woke up yesterday morning. Immediately, I felt incredibly nauseous, a feeling which has become far too familiar recently and that I will be bringing up to my rheumatologist at my next appointment. It was somewhere between 4 and 5 a.m., and I stumbled to the bathroom, threw up, and curled back up into bed. My joints hurt SO much, and I honestly doubted my ability to walk back and forth, so at some point I took a 10 minute nap on my bathroom rug before I decided to regain my dignity at least a little bit by walking weakly back to my bed.

      Sitting up versus lying down never seems to make any difference as to how my joints feel or how severe my nausea is, but I kept constantly changing my position anyway, in hopes that something would work. Except every time I tried to sit up, my back, neck, wrists, elbows, and hips pulsed with excruciating arthritis pain. The walks to the bathroom were more painful than throwing up was, and that is saying quite a lot, because there are few things in this world I hate more than nausea. I managed to take a shower, but washing my hair was an exceedingly unpleasant experience, because my wrists and fingers were not enjoying the shampoo process. I almost cried while brushing my hair - the storm of pain caused by standing up and using a comb almost overtook me. I put fresh pajamas on and took a short nap in hopes of waiting out the nausea.

     Ondansetron used to work like a charm for my stomach issues, many of which are caused by a combination of chronic pain and medication, but not so much anymore. I took one dose, as prescribed, but felt no effect after 2 hours. Finally, around 11 a.m., I stopped feeling queasy and my joints felt like they had at least a fifty percent chance of making it down the stairs. Fifty percent was good enough for me, because I was extremely hungry, since there was absolutely nothing left in my stomach. So I did the horrifyingly embarrassing thing where I sat on the top stair and then scooched down them, one at a time, until I was on the first floor. I greeted my dogs and slapped together a lousy but appetizing peanut butter and jelly sandwich, using all of the energy I could muster. I was able to eat about half of it before it all came right back up. My next thought, which was not a bad one for the amount of brain fog I was fighting, was to make a smoothie, but we did not have the necessary ingredients and I did not have the energy to drive and buy one, so I went back to my bedroom, defeated and exhausted by my futile attempt to regain energy.

      At this point, I was so done. I emailed my teachers apologizing for my absences and attempted (successfully!) to get some of my schoolwork done. I was trying to rest up in order to make it to both my evening appointment and my college interview, the first of which started at 5 p.m. Determined to improve my day and abolish the empty stomach issue that was only causing my symptoms to worsen, I drove myself to Smoothie King in a college sweatshirt, pajama pants, and boots, and when the employee handed me my small vegan mango kale smoothie she said, "I hope you get to feeling better," even though I never told her that I was sick. I guess limping in and looking pale gives all my secrets away. As disappointed as I was by my outward display of illness, I was also thankful for her words. I see her occasionally at Smoothie King, but otherwise she is a stranger, and I am encouraged by the fact that even strangers have encouraging words for other suffering human beings.

Rachel, Allie, and Hannah (my younger sister) in 2014
     Luckily, my excess amount of rest meant that I could go to my appointment and college interview, but I was so exhausted afterward that I had to cancel Facetime plans with a long-distance friend, which saddened me. In response to my disappointed and apologetic cancellation text, Allie wrote a super encouraging text letting me know that canceling was okay, that I should not feel guilty about it, and that she wants to hear about my arthritis when we do catch up. And so I found myself simply overwhelmed by gratitude for friends that are involved and compassionate regardless of distance or illness - what a gift it is to know people as wonderful as Allie.

     I would like to propose that the only way to win is to keep living. Not necessarily to overcome every struggle, but to be willing to try every morning. I am not everything, and I am not capable of everything, but I definitely am willing and eager to live in a full and sometimes reckless way that is not hindered by arthritis.

     Today I used my wheelchair at school for the first time since my sophomore year. I was a bit stressed about it last night, and asked Faith (my best friend, see "Procrastination of Thought") whether it would be better to bring the wheelchair or to walk slowly with help. In her typical pragmatic manner, she responded, "Bring the wheelchair and have someone help you with doors and [with] screaming at people to get out the way." I laughed and approved of her plan, and for once I took her advice, and it really paid off.

     Instead of feeling down in the dumps about using my wheelchair, I felt incredibly relieved. I was able to talk to my friends, laugh until my stomach hurt, and participate in class, all because the burden of class changes was not making me feel dead inside. On top of that, everyone was genuinely kind about it. I never had to ask someone to hold a door - someone always did, and it was mostly strangers. When I went in this morning to talk with my independent study adviser, he encouraged me to rest and gently said, "You don't have anything to prove." I am always surprised by the simplicity of his words and the deep meaning behind them, and I was very appreciative of his support. In many ways, I went into school today thinking that I did have something to prove. I felt like I needed to prove that I was a competent person who cared about my schoolwork and did not intend to miss school yesterday. But after being given such a compassionate reminder, I was content with doing the best that I could and trusting that the people around me were on my team in this five-year long fight against my immune system, not skeptical sideliners taking critical notes on my abilities.

    Furthermore, the two substitute teachers I had today didn't berate me about using the wheelchair for an invisible illness, and I was given understanding looks by my calculus and English teachers instead of shocked displays of pity. My teachers collectively responded to my pain by shifting objects in the classroom instead of shifting their expectations, and they laughed at the corny arthritis jokes I made. So all in all, it was a good day, and I came home not feeling terrible. If I have to use a wheelchair to feel that way then so be it, because it is completely worth it and stigma doesn't scare me nearly as much as it used to.

     And this, my friends, concludes my tale of two days.