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.

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