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?

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