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.

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