I’ve had a hard week. Actually, I’ve had a hard semester. Every time I see a new doctor or explain my situation to a new friend they express utter disbelief that I am still in school. I’m THAT girl.
I have been running nightly fevers this week, which has been less than ideal but bearable when I am intentional about time management and getting all my work done prior to my inevitable rise in body temperature. Its predictability adds to the frustration, but I am trying to take everything slow and take deep breaths. On Thursday I made a visit to the Student Health Center because I was feeling terribly ill and missed both of my morning classes (very atypical of me), and the doctor I saw essentially insisted that I “listen to my body” by spending the day in bed. If I have to rest and cancel all of my plans today, I’m doing it with pets, I thought, and so my dad kindly picked me up and drove me home, where I slept for many of the daytime hours with my small dog curled up with me.
As many of you know, I saw another new rheumatologist this past Monday. I am happy to report that the experience was excellent. After taking my history (which we both admitted was quite extensive) and performing a clinical exam, she looked me in the eyes and said, “I believe you. I don’t know what’s going on, but I believe you.” I am so grateful that she said this. For the entirety of the #MysteryIllnessCrisisOfFall2017, not a single soul had said this to me, neither a doctor nor a friend. I did not realize how much I was longing to hear it until the words came out of her mouth, and for the first time in several months I felt like I could breathe. Intentionality is everything. This is likely to be a good patient-doctor match.
The new rheumatologist and I laughed about what a mess I am together before talking through several different options for next steps. I requested a referral to physical therapy, where they will be helping me with inflammatory hip issues that have been bothering me over the past few months. We are starting me back on my Arava (leflunomide) and a biologic that I have not yet tried, Humira. If any of my arthritis/autoimmune friends have been on Humira and would be willing to share tips, it would be much appreciated! I hear it is excruciatingly painful but effective for many people. I will be doing the at-home syringe injections every two weeks.
Between the fevers, the death of my dog, other painful symptoms, outside scenarios, and an overwhelming amount of academic assignments, I am low-key having a terrible two weeks even in the midst of the semester that is trying to destroy me, so if I have not responded to your email, message, or text, please know that I received it and that all of them have been so encouraging to me. Thank you for your kindness. I read every single message multiple times and cherish each one of them.
My friend Alana has put up with my struggle so compassionately this week, so I would like to thank her for cheering me up, listening to my complaints without any trace of judgement, and making me laugh during my nighttime fevers while we “did homework” (read: hung out in the student center with our assignments open on our laptops). I am thankful for sweet friends with lots of love to offer and smiles to share.
Even though I have been living with chronic pain for about seven years now, I still sometimes feel absolutely suffocated by the notion of never breaking free from the body that entangles me in the cruel stabs of invisible knives and silent agony of unrelenting aches. I am thankful for friends who make space for these worries of mine, and who acknowledge that they do not always dissipate with time, but rather fade in and out.
In one of my classes this semester we have been talking about illness narratives, and about listening to people’s own account of their health experiences. It has allowed me the opportunity to ask some people, “What is it like to live with [condition]?” In asking this question, I have been forced to confront the reality of how infrequently we take the time to fully soak in someone else’s narrative rather than constructing our own. We are quick to notice the little things, like our friends having to call their doctors or getting injections or going to the hospital often, but we rarely step back and ask about the big picture. I would encourage you to ask someone that this week, if it feels appropriate and if it is a question you think your friend would be comfortable answering. You might be surprised by the response you receive or what you learn.
I would like to thank my friends Marissa, Marisa, Laura, Annie, and Erica for helping me remain in my classes this semester by sharing their notes with me when I am absent from class and keeping me caught up on the material. This is a story for another post, but I almost withdrew from the semester due to my health. These fabulous friends encouraged me, supported me, and assisted me academically, even though I just met all of them this year. I am lucky to know such wonderful people.
I want to end this post with the happy news that my arthritis twin Paula, who I met at the JA Conference in Indianapolis this summer and whose journey with juvenile arthritis has been absurdly similar to my own, is blogging now! You can check out her writing here. Paula escribe su blog en inglés y español. Yo recomiendo mucho que lo leas, especialmente si estás buscando para información sobre las enfermedades crónicas – es un gran recurso para las personas con y sin artritis y sus amigos. I am so excited to read your future posts, Paula!
This semester will be over very soon, which is a good thing because I frankly don’t know how much longer I could make it through. My dad and I are visiting New Orleans in between my last exam and my surgery, and I am SO excited!!!! I cannot wait to see all of my Tulane friends and visit St. Anna’s, my NOLA church. I just have to make it a few more weeks, so if you have any excess strength or energy please send it my way and I promise to use it wisely.
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