Wednesday, July 18, 2018

Miracle Workers

          The last few weeks have been painful.

Flaring is no fun, but the flight to San
Francisco was beautiful!
          I went into a flare right during/after my return from Seattle, and it hit me hard. I know how to explain all of the chaos that pain causes, but I have no idea how to explain pain itself. It just hurts. In my English classes, we sometimes discuss the idea of pain as the absence of language. There is no way to let other people in or to get out. Here is what I can tell you: I slept for 17 hours per day for three days in a row. I was unable to go to work. I cried at the dinner table. It was horrible. 

          Thankfully, I went to my weekly physical therapy appointment for my jaw a few days after the flare started. My physical therapist noticed immediately how terrible I looked, and instead of asking me, "How have you been this week?" like she normally does, she went straight to, "Oh dear, tell me what's going on." I cried and cried as I described the flare, and she listened empathically the entire time, her hand rested gently on my aching knee, without saying a word.

          At the end of my rambling and repeated, frantic confessions of, "I have no idea what to do," she convinced me to email my rheumatologist. My rheumatologist, who is attentive and responsive and smart and everything you want a rheumatologist to be, emailed me back just a couple of hours later and sent in an urgent, fast-acting prescription for me, which I started just a few hours after her email. By the next day, I was already starting to feel a bit better. 

          When I first started jaw physical therapy, I thought I was only going to between four and six appointments total. I brought a different friend to each of them and did not make much of an effort to get to know my physical therapist or the technicians (to be fair, I was also having needles stuck into my face repeatedly, so I was not in top friend-making mode). Once I realized that these appointments were going to be happening weekly for an indefinite amount of time, I ditched my strategy of having to organize someone to go with me every week (too exhausting) and decided that I was going to have to be a little friendlier. 

          Now that I have become a bit more invested in not being miserable at the appointments, considering that they are a weekly part of my life, I feel so grateful for my physical therapist. She has quickly become one of my favorite members of my medical team. She talks to me about Paris and New York City and Seattle to distract me from discomfort. She invites me to imagine all that I might be able to see and do in the world, even with arthritis. She listens carefully and never rushes or interrupts me, even when I am losing it a bit, and that is rare for a medical professional. She is gentle even when her therapies are invasive and painful. She is kind and empathic and she communicates effectively with the rest of my medical team (at this point, my jaw has a sub-team within my larger medical team, which is as ridiculous as it sounds). 

          I am equally grateful for my rheumatologist, who acted quickly after I emailed her, and who has been following up with me ever since. She communicated with my jaw surgeon and helped me with a medication plan just in case things get worse while I travel over the next couple of weeks. 

          At an appointment on Monday, I confessed to my jaw surgeon that I had been hoping to have my October 2017 surgery repeated before I spend two weeks abroad, but that I knew that it was too late now. He truly listened as I explained how much I wanted to chew without pain, enjoy the trip, etc., and rather than brushing these things off as minor inconveniences or viewing my concerns as unimportant, he asked, "What about Thursday?" We talked about the risks of having a surgery exactly one week before getting on a plane. It does not feel great to be at a point where that sounds like a risk worth taking, but here I am. I have no idea how I got here, but I am grateful for miracle workers. Within the span of just a few hours, I had an x-ray of my jaw, a consultation, a surgery scheduled, impressions of my teeth made, a chat with a financial counselor, approval from my insurance company, a health history taken, a consent form signed, vitals taken, and a pre-op appointment in a different part of the hospital. 

          So there is a third incredible member of my medical team. I am grateful for my jaw surgeon for being willing to make something that seemed impossible happen in a matter of days. 

          Perhaps most importantly, I am grateful for my friends. When I told them I was having unexpected but long hoped-for surgery, they immediately wrapped me up in words of encouragement and in positive vibes and in love and in the promise of their presence. Without missing a beat, they jumped to, "Okay, we're ready. How can we help?" They automatically began inquiring about my smoothie orders and asking which days they could come over. There is exactly one week between my surgery and my flight to go out of the country for a couple of weeks, and the few friends I have told about the surgery have offered company and rides and promises to check in with me, even after I insisted that the operation is minor. One friend promised to talk about nuns with me, while another suggested driving me around with the windows rolled down if I feel stuck at home. One suggested a spontaneous trip to Target, where we bought face masks in preparation for a bit of post-op pampering. My friends teach me so much about what it means to draw people closer when they are suffering rather than shut them out. If a miracle is something inexplicable and divine, their reactions prove that they are miracle workers. And local friends, if you're looking for anyone to go get manicures/eat ice cream/watch Netflix/cry over minor problems with over the next week, I'm your girl. 

          Just getting booked for this surgery was a miracle, and because I have had it before, it does not seem justified to feel nervous. I was totally in my "yes, let's go, let's get it done, hooray" mode on Monday, but I have found myself more anxious last night and today, I think in part because it feels like everything is happening so quickly and I have not had adequate time to digest that I have to go through the whole hospital/anesthesia process tomorrow. Today I feel fearful and hopeful. I feel excited and desperate. I feel worried and empowered. I feel relieved and nervous. 

A post shared by Rachel Sauls (@rachelksauls) on

          Maybe it is okay to be enormously grateful, overwhelmed by the kindness of my medical team and friends, and a bit scared all at once. I am writing my surgeon a thank you note in advance since I am worried that I will forget to pause and truly express my gratitude when he comes in to check on me before the surgery. I do not feel like I will ever be able to return all of the kindness that people have so freely offered me. It seems like the least I can do is make sure to say "thank you."

          Despite all of this chaos, I really am doing my best to recognize and be involved in Juvenile Arthritis Awareness Month. This Sunday at 9 p.m. EST, I'll be going live on Facebook (send me a friend request!) and Instagram (rachelksauls) simultaneously with my best friend Faith to do my Humira and methotrexate injections. Weekly injections are part of life for a lot of JA kids, so I hope that you will consider tuning in to see what this process is like and to ask any questions you might have about injections or JA in general! I will also give a little update on jaw surgery recovery.

          If any of you have suggestions for reducing pre-operative anxiety, I would very much appreciate them. Also, if you have ideas about what I can do to entertain/calm myself in the two hours between arriving at the hospital and being fully anesthetized, I would appreciate those as well! Many thanks to all of you. It is exciting to think that the next time I post on this blog I may be in much less pain. It feels worth the risk.  

Tuesday, July 3, 2018

What Arthritis Looks Like

          Arthritis can look like all sorts of things. It can look like a friend of mine who struggled to breathe as an infant. It can look like a ninety-five-year-old with no cartilage left. In light of Juvenile Arthritis Awareness Month, the examples below describe some of the ways arthritis has looked for me over the past few days, in the midst of travel, work, and a flare. This is not what arthritis looks like for everyone, but I hope it serves as a reminder that this illness is way more expansive than our predominant cultural narrative of it. 

          Arthritis looks like a teenager lying in the fetal position with tears in her eyes for three hours on the scratchy, gray carpet of the San Francisco airport. 

If one is going to be miserable in an airport, one might as well
be miserable while watching planes take off.

          Arthritis looks like mindlessly watching "Say Yes to the Dress" and cringing, because even just watching the excruciatingly painful movements required to try on dresses hurts.  

          Arthritis looks like slowly attempting to move each joint one by one before getting out of bed in order to reduce the ridiculous amount of morning stiffness despite spending the entire night under a heated blanket. 

          Arthritis looks like an undergrad who appears to be perfectly healthy injecting a syringe full of toxic yellow liquid into her stomach, which will undoubtedly make her nauseous and tired, before heading into work. 

          Arthritis looks like a vegan who loves to cook preparing a fresh, delicious lunch, only to eat a couple of bites before placing the rest in Tupperware and blending a smoothie instead because her jaw hurts too badly.  

          Arthritis looks like an intern lying in her bed in her professional clothes, with her backpack on her shoulders and tears sliding off her cheeks, because getting ready for the day took up 100% of her energy and now she is unable to actually go to work. 

          Arthritis looks like thrashing uncomfortably in a half-asleep state, unable to find a position that does not produce intolerable pain. 

Thankfully, arthritis can also look like happier moments,
such as going out for ice cream with my sister before a
jaw physical therapy appointment a few weeks ago,
to balance some of the harsher realities :)

          Arthritis looks like standing shakily in the back of a plane only one hour into a five hour flight, begging the flight attendant for ice to put on swollen joints and intentionally using the phrase "musculoskeletal disease" because having to explain in the midst of a flare that kids get arthritis, too, would require too much energy.

          Arthritis looks like staring blankly at the draft of a time-sensitive email for forty-five minutes, because joint pain can make concentrating on a simple task nearly impossible. 

          Arthritis looks like a daughter texting her mom, "I am so frustrated" in reference to her flare and fatigue, and then screening her mom's subsequent phone call because she does not have the energy to speak. 

          Arthritis looks like a hastily scribbled note of doctors that need to be called, appointments that need to be made, and questions that need to be asked. 

          Arthritis looks like a sick person writing publicly about awful days, not because it is rewarding or cathartic in any way, but because she needs better resources, more treatment options, an expansion of current medical research, progressive healthcare legislation, an improved understanding of autoimmune illness, and a cure.